http://thebuckingjenny.blogspot.com/2012/09/an-open-letter-to-candidate-romney.html
This woman is amazing and brave. Please read her post. It is important to have a voice right now.
I am disabled. I refused to apply for disability for nearly 2 years after my doctors told me that I should apply. I wanted to be independent. To take responsibility for my life as you put it. I lived off savings from a job I had as a teenager. I applied to every job I could. I wasn't hired and I physically couldn't work them so that was probably for the best.
This was 2009, right after the crash. I was 23 years old, just out of college, and living with an incurable, untreatable genetic condition, an incurable spinal condition, and an incurable disease. My doctors ("It's not your fault, you never had a chance,") and my empty bank account convinced me that I had to give up for now and apply. Every day, I still feel guilty even though I shouldn't have to feel that way. The system is set up for people like me. I don't want to use it, but it's the reason I eat, have heat in the winter, and a roof over my head. Every day I think maybe this new treatment, this medicine, this wheelchair, this physical therapy will help me work again.
I had refused to apply because of pride, because I didn't want the government to pay my way in the world. I still don't want that. But I understand now that as a country we take care of each other. We are supposed to understand that anything can happen at anytime to any of us and that the system, while far from perfect, is here for everyone who needs it. Do some people abuse it? I'm positive they do. But most of us aren't like that. We're just trying to live, one day at a time with our diseases, our conditions. Our pain and our inability to live the life we imagined. Not the big things, the ballroom and yacht dreams--the little things--walking down the aisle, picking up a glass, holding someone's hand, running, using the bathroom on our own.
I admit to having been a victim in my life. I have been robbed, bullied, sexually and emotionally abused, and attemptedly raped. I was a victim then and I healed and grew strong and rose above it. NOT on the government's dime, might I add. Now, my own immune system is attacking me. My DNA is flawed. I do not consider myself a victim. I stand up against this and I fight the good fight everyday. I fought hard to stay off government assistance and I fight hard still to go off of it one day, even though I am gently reminded by doctors that I will never get better, that I will only get worse.
So no one has the right to say that I am not taking care of my life. To say that I consider myself a victim. That all I want out of life is to live off the government (that I have paid into) and bask in my pampered moocher lifestyle.
I find it disgraceful that a candidate for president would use phrases such as "those people" or "people like that." You do not pick and choose the people you represent in office. But I am not an elected official and so I will use that phrase. It is people like Mitt who instill that feeling of shame and guilt that kept me from accepting the help our government has in place for people in my situation.
People who yell at the top of their lungs to pull yourself up by your bootstraps, but they have never experienced what it's like to not be able to put your own boots on. To have to ask for help to get dressed in the morning.
It is important to understand that this 47% view of the world is not only cold-hearted, it's wrong. The 47% are the disabled, our troops fighting overseas, our elderly, and our very very rich who have no need to work. Do not belittle my fight, my daily efforts often against medical advice, by saying I don't take responsibility for my life. Not until you've watched me put my dislocated shoulder back in place for the 3rd time today so that I can keep doing my physical therapy and maybe, maybe be well enough to work one day.
Friday, September 21, 2012
Monday, June 4, 2012
An Update: As requested.
Yikes! It's nearly been a year since I posted on this thing! OOPS. I wish I could say I haven't been posting because I've gotten all better via some fantastic miracle (preferably from eating some magically cookie), but alas no. I'll try to catch you up without writing a novel on here (EDIT: I failed to not write a novel here. You've been warned.) I'll try to start from my last entry.
Anyway. March is when things started to go downhill. Normally I have swelling and increased joint pain in my hands early in the morning and late at night. The swelling stayed the same, but the pain started to last longer in the morning and come earlier at night. And then once or twice a day it would show up in my feet. And then my ankles. Then my wrists. And then my knees. And then the pain was in my hands and feet equally. And then that pain tripled. It got so bad I wasn't sleeping at night. And I was keeping M up because the pains were so sharp and sudden that I'd flinch/jump when they happened.
The best way I can describe it is that it's a little like a game of whack-a-mole. I promise that will make sense in a second. In whack-a-mole you've got a little mallet and you're waiting for creepy little plastic moles to pop up so you can hit them. Well, it's like that in that I know that there is going to be this sharp stabbing joint pain. I don't know where on my body it's going to pop up, but I know it's coming. A hand this time? Or a foot? One of my knees? So I'm waiting, but I'm never really prepared and then BAM! it pops up but I don't have a little mallet or anything to fix it. So I called my Rheumy.
She put me on an 8 day round of prednisone, hoping it was a flare that we could get to calm down. The prednisone made me feel like a thousand bucks. UCTD joint pain went away (EDS joint pain wasn't really affected, but I'd take EDS pain over UCTD any day of the week). And the brain fog went away! I could think clearly again! It was fantastic! And then the 8 days were over and I rapidly went into withdrawal and spent the next 3 days either on the couch or vomiting. Not sure what I was vomiting because the sum of all my meals for those 3 days consisted of water and maybe 10 saltines.
But when the prednisone nastiness cleared, I was back to my normal! YAY! Back to my normal UCTD pain! Not perfect but I'll take it! It worked!
And then May got here. And the pain started to spread again. And it came back worse. The constant pain in my feet was so bad that I couldn't put any weight on my toe joints/the balls of my feet. I started walking on the sides of my feet, on my ankles, and sometimes on my heels. I walked less and less. If it was that level of pain on my bad days, I could do it, but it was my everyday and it just isn't a level of pain I can handle. I'm losing more and more of my mobility in my hands, but thanks to EDS, it's still more than average non-bendy folk have.
I also got my first where-in-the-hell-did-this-come-from rash. On the back of my shoulder. It itched like mad and at first looked like 3 bug bites, then swelled up like crazy to be this 3 inch circle of red. Then it stopped itching and just burned. Doc said it looked like it could maybe be poison ivy, but I'd spent the whole last week on the couch with angry don't-touch-me feet so I hadn't been out much. It's gone now and my doc's not worried so I'm not worried.
Saw my Rheumy again about the pain coming back. Did more labs and an MRI. No answers, but also no joint damage so that's good. We talked options for a while and came down to me going on a 5mg maintenance dose of prednisone for 1-2 months and then coming off of it. Her hope is to put my disease back into remission, even if that gives me just 1-2 months of remission until the symptoms show back up and then I go back on the prednisone for 1-2 months. It's not a solution I was super happy about because I don't like being on prednisone, but so far I haven't had any nasty side effects or bad reactions at this low a dose.
It's working enough. It's not working as much as I'd like. The pain is reduced enough that I can walk on the correct parts of my feet, but the pain is not gone, and it's not even back down to my "normal" level of pain. But it is manageable. So that's how I'm living right now. I am managing. I've had some times when I can't walk on my feet, but it's usually early morning or in bad weather and it doesn't last, unlike before. And my Rheumy is having me take my insomnia meds daily now so I am sleeping through the pain. I see her at the end of the month to see how things are going. If this doesn't work, our next option is methotrexate which comes with a boatload of nasty side effects and regular blood work to monitor blood counts as they fall (which they will) and liver function. So if we can avoid MTX, that's for the best. I just continue to hope and pray that this temporary solution works to put me back into remission when I come off of it this month or the next.
It's been hard as there are more things I feel like I can't do anymore. More things this disease takes away. I haven't been updating this thing, because often, I just don't want to think about it. But M and my faith have really been getting me through. It's not something I feel a need to hide from the world, but it's not something I talk about much either--mainly the two groups of people I talk to are either atheist/agnostic and religion is for the unenlightened, and in the other faith is truely a personal foundation, but it's assumed and vocally a Christian faith. In the past I haven't felt comfortable talking about my faith openly because I can't predict the reactions, but right now that fear feels unimportant and small. Without my faith, I'm sure I'd be in a capital-D Depression. But I'm not. I know that my gods are right here with me and they hold me up. It is coming up on 10 years since I was dedicated to my patron god. It sounds like a long time, but it doesn't feel like it. I have evolved and grown and changed so much in 10 years, but he has been a constant; he has lived in and around me like breath, reminding me to let go and follow, that I will be taken care of, reminding me of my own strength. He fills my mind with wind when it feels hollowed out by pain. I just can't feel right about keeping this a secret for fear of what others will think. Hi, my name is K, and I'm a poly/pantheist who practices what I just recently found out is called Celtic Shamanism. Who knew.
But it's not just the gods getting me through-- M is amazing. I will never be able to thank her enough. She's my perfect companion. She's always there when I need her and she scolds me for not taking care of myself and reminds me to ask, and to accept, help. She's the reason I can say in the face of all this pain and restriction, I am happy.
- I showed my Rheumy the pictures of my beau's lines like dents. He said, "I don't know what that is," and left the exam room while I was still actively asking questions. Me = unhappy.
- Showed the pictures to my primary care when next I saw him--Yup. They are definitely Beau's Lines. Basically, my flare was so bad that it caused the nail matrix on the affected hand to stop growing (the cells stopped dividing) for a while so when they started growing out again, they had a gap. That just doesn't sound good. My doc was concerned but it's not his area. I asked to see a new Rheumy and he referred me happily.
- New Rheumy! I was really nervous, but she's fantastic. Very warm, listens, stays with me as long as I need. She saw me, heard my story, ordered labs, and wanted me back in a week so she'd have some time to research EDS in conjunction with Scleroderma. Confirmed Beau's Lines and looked at my cuticles and confirmed I have nailfold capillary drop out.
- Labs were my average. Positive ANA but no other markers. She tested for a rare Scleroderma maker which was negative, thank the gods!, because it's associated with Sclerodermic Renal Disease. She contacted an old professor on Sclero and asked him to review my case. Conclusion is that if someone has both EDS and Sclero, docs should NOT expect to see skin hardening. So she's not diagnosing me with Sclero, but said that she was going to treat me as though I were one of her Sclero patients.
Anyway. March is when things started to go downhill. Normally I have swelling and increased joint pain in my hands early in the morning and late at night. The swelling stayed the same, but the pain started to last longer in the morning and come earlier at night. And then once or twice a day it would show up in my feet. And then my ankles. Then my wrists. And then my knees. And then the pain was in my hands and feet equally. And then that pain tripled. It got so bad I wasn't sleeping at night. And I was keeping M up because the pains were so sharp and sudden that I'd flinch/jump when they happened.
The best way I can describe it is that it's a little like a game of whack-a-mole. I promise that will make sense in a second. In whack-a-mole you've got a little mallet and you're waiting for creepy little plastic moles to pop up so you can hit them. Well, it's like that in that I know that there is going to be this sharp stabbing joint pain. I don't know where on my body it's going to pop up, but I know it's coming. A hand this time? Or a foot? One of my knees? So I'm waiting, but I'm never really prepared and then BAM! it pops up but I don't have a little mallet or anything to fix it. So I called my Rheumy.
She put me on an 8 day round of prednisone, hoping it was a flare that we could get to calm down. The prednisone made me feel like a thousand bucks. UCTD joint pain went away (EDS joint pain wasn't really affected, but I'd take EDS pain over UCTD any day of the week). And the brain fog went away! I could think clearly again! It was fantastic! And then the 8 days were over and I rapidly went into withdrawal and spent the next 3 days either on the couch or vomiting. Not sure what I was vomiting because the sum of all my meals for those 3 days consisted of water and maybe 10 saltines.
But when the prednisone nastiness cleared, I was back to my normal! YAY! Back to my normal UCTD pain! Not perfect but I'll take it! It worked!
And then May got here. And the pain started to spread again. And it came back worse. The constant pain in my feet was so bad that I couldn't put any weight on my toe joints/the balls of my feet. I started walking on the sides of my feet, on my ankles, and sometimes on my heels. I walked less and less. If it was that level of pain on my bad days, I could do it, but it was my everyday and it just isn't a level of pain I can handle. I'm losing more and more of my mobility in my hands, but thanks to EDS, it's still more than average non-bendy folk have.
I also got my first where-in-the-hell-did-this-come-from rash. On the back of my shoulder. It itched like mad and at first looked like 3 bug bites, then swelled up like crazy to be this 3 inch circle of red. Then it stopped itching and just burned. Doc said it looked like it could maybe be poison ivy, but I'd spent the whole last week on the couch with angry don't-touch-me feet so I hadn't been out much. It's gone now and my doc's not worried so I'm not worried.
Saw my Rheumy again about the pain coming back. Did more labs and an MRI. No answers, but also no joint damage so that's good. We talked options for a while and came down to me going on a 5mg maintenance dose of prednisone for 1-2 months and then coming off of it. Her hope is to put my disease back into remission, even if that gives me just 1-2 months of remission until the symptoms show back up and then I go back on the prednisone for 1-2 months. It's not a solution I was super happy about because I don't like being on prednisone, but so far I haven't had any nasty side effects or bad reactions at this low a dose.
It's working enough. It's not working as much as I'd like. The pain is reduced enough that I can walk on the correct parts of my feet, but the pain is not gone, and it's not even back down to my "normal" level of pain. But it is manageable. So that's how I'm living right now. I am managing. I've had some times when I can't walk on my feet, but it's usually early morning or in bad weather and it doesn't last, unlike before. And my Rheumy is having me take my insomnia meds daily now so I am sleeping through the pain. I see her at the end of the month to see how things are going. If this doesn't work, our next option is methotrexate which comes with a boatload of nasty side effects and regular blood work to monitor blood counts as they fall (which they will) and liver function. So if we can avoid MTX, that's for the best. I just continue to hope and pray that this temporary solution works to put me back into remission when I come off of it this month or the next.
It's been hard as there are more things I feel like I can't do anymore. More things this disease takes away. I haven't been updating this thing, because often, I just don't want to think about it. But M and my faith have really been getting me through. It's not something I feel a need to hide from the world, but it's not something I talk about much either--mainly the two groups of people I talk to are either atheist/agnostic and religion is for the unenlightened, and in the other faith is truely a personal foundation, but it's assumed and vocally a Christian faith. In the past I haven't felt comfortable talking about my faith openly because I can't predict the reactions, but right now that fear feels unimportant and small. Without my faith, I'm sure I'd be in a capital-D Depression. But I'm not. I know that my gods are right here with me and they hold me up. It is coming up on 10 years since I was dedicated to my patron god. It sounds like a long time, but it doesn't feel like it. I have evolved and grown and changed so much in 10 years, but he has been a constant; he has lived in and around me like breath, reminding me to let go and follow, that I will be taken care of, reminding me of my own strength. He fills my mind with wind when it feels hollowed out by pain. I just can't feel right about keeping this a secret for fear of what others will think. Hi, my name is K, and I'm a poly/pantheist who practices what I just recently found out is called Celtic Shamanism. Who knew.
But it's not just the gods getting me through-- M is amazing. I will never be able to thank her enough. She's my perfect companion. She's always there when I need her and she scolds me for not taking care of myself and reminds me to ask, and to accept, help. She's the reason I can say in the face of all this pain and restriction, I am happy.
Wednesday, July 13, 2011
Hand photos--otherwise it's business as usual
I've been meaning to post some pictures M was kind enough to take of my hands and the new weird stuff that has been showing up on them. None of it is painful or even very noticeable to other people, but to me, it really sticks out.
Things have been pretty average. EDS is EDS--I've been popping joints out and back in as usual. I went down to my half dose of plaquenil and the sky hasn't fallen which is nice. My pain level is up. My hands hurt more than they did before, they swell more in the morning, and the pain wakes me up some nights. But it's still a manageable amount of pain. If when I report to my Rheumy in two weeks he tells me he'd like to stick with this treatment plan, I wouldn't fight him on it. As long is it doesn't get worse. And as long as my organs are still all in working order, which my bloodwork that I got done on Monday should tell us. Here's hoping.
Finger Pictures!
These are the dents I had in my fingernails. You can see them on my index and ring fingernails. There is a tiny one on my pinky fingernail but it doesn't really show up. They have all, except for the pinky, grown out.
Here is a not so great photo of a splinter hemorrhage on my thumbnail. By the time I thought to take a picture of it, it had already half grown out, but here's what was left of it. You can see it (it looks like a black line) in the right-hand corner of my nail, right before the nail turns white at the edge.
And here are what my nail-beds and cuticles look like now. Back when I first started seeing docs for this autoimmune thing, they had checked my cuticles and said they were right on the edge of being abnormal--but they looked normal to the eye to me. Now they don't look so normal, so I hope my doc checks them out when I see him next.
You should be able to see along my cuticles, there are little blood colored dots and streaks. They weren't there a month ago.
Things have been pretty average. EDS is EDS--I've been popping joints out and back in as usual. I went down to my half dose of plaquenil and the sky hasn't fallen which is nice. My pain level is up. My hands hurt more than they did before, they swell more in the morning, and the pain wakes me up some nights. But it's still a manageable amount of pain. If when I report to my Rheumy in two weeks he tells me he'd like to stick with this treatment plan, I wouldn't fight him on it. As long is it doesn't get worse. And as long as my organs are still all in working order, which my bloodwork that I got done on Monday should tell us. Here's hoping.
Finger Pictures!
These are the dents I had in my fingernails. You can see them on my index and ring fingernails. There is a tiny one on my pinky fingernail but it doesn't really show up. They have all, except for the pinky, grown out.
Here is a not so great photo of a splinter hemorrhage on my thumbnail. By the time I thought to take a picture of it, it had already half grown out, but here's what was left of it. You can see it (it looks like a black line) in the right-hand corner of my nail, right before the nail turns white at the edge.
You should be able to see along my cuticles, there are little blood colored dots and streaks. They weren't there a month ago.
Tuesday, June 14, 2011
Up's and down's = Middle ground?
I have been awful about keeping this up. Apologies. I'm sure the rest of you bendies/spoonies know how it is. Also, hugs and good juju to everyone out there having a hard time this month.
It's funny, my hands still don't look like my hands. It's been over a year since my fingers went all wonky. They don't look like they used to. Even on good days they're red and swollen and knobby. Mottled with reticularis. The skin is loose and shiny from being stretched out during flares. You'd think after almost a year and a half I'd be used to the look of these new hands, but I'm not. They're still weird hands. Bad hands. It's strange.
I finally received word that I have been approved for medicaid! Again. After their screw up. But it's back! So I have my back up insurance and that's a good thing. There have been a few other insurance debacles that I just can't even bare to go into. They involve hours on the phone and a bunch crying from me because I'm a wimp and get overwhelmed. Bottom line, I think things will be okay.
My condition has been pretty stable. Joints pop out, joints pop in. Muscle spasms. Standard EDS junk. Brain fog is in full force and nasty. It's hard to find the words I mean to say. It's like suddenly English is my second language and the vocab is hard to remember and everyday is a pop quiz. I've had a few flare ups of my autoimmune disease. At least I know now how to predict them. If I start getting splinter hemorrhages, I know I've got about a week until I lose use of my hands.
I think I've got Beau's lines on my fingernails that showed up during my last flare and that's weird. You know in cartoons when someone's hand gets slammed in a door or car trunk and when they take it out they've got this big dent in their hand? That's what my fingernails look like, except I didn't shut a door on them. I took pictures for my doc. I don't know what that means, but at least it's growing out.
I've lost weight. Not on purpose. More like I'm slightly concerned that I've lost weight. Nothing drastic, just 10 pounds but not on purpose. My appetite is riding pretty high. Sometimes I feel like I did on prednisone: I COULD EAT EVERYTHING! I try to keep things reasonable, but I'm not trying to drop more pounds even though I'm technically "overweight" and I bet my docs would probably like me another 10 pounds lighter. But whatever.
The point is that by dropping weight I'm now right on the edge of the dosage amount for Plaquenil. At my weight I should probably be taking half of what I'm on now. So, as I said before, my Rheumy has instructed me to drop down to half my normal dose at the end of June and see how it goes. The plaquenil has been working wonders for me. My last blood workup had me at almost normal ANA levels. It's really suppressing the disease. I'm worried about what will happen. It's a little scary. I'm worried the disease will come back on full force. I just want to stay the course I'm on. You know, without liver and kidney toxicity from too much plaquenil. That'd be great, thanks. While we're making requests, I'd also like some cheese fries. (See, there's that appetite thing again.)
I have a deck garden now. M is so good to me. She financed it and let me do all the dirty work. It's nice being a kept woman. It looks great and I love it. I am pretty content actually. I mean there are SO many things that I want to do that I can't: work, run, hike, drive, knit, etc; but still. With what I have, I feel so content and happy. The things that I want are out of reach for the time being and I'm starting to accept that but not in a way that I feel defeated. More in a way that I feel zen. So ignoring those wants and ignoring my ever present want for good health, I don't really want for anything right now.
I used to feel like I was missing huge chunks of my self. Like EDS and UCTD had taking big raw bites out of me and run away with them. But I don't anymore. I feel whole even with all my limitations. I used to feel like not enough of a person when I couldn't dress myself or open a bottle, but for the most part I just feel like a good, whole person. I still have my bad days, my bad moments when I mourn how dependent I am, how I just can't work a job no matter how hard I try or want to, how I just want to be well, but they pass. It's not like if I could do those things, I wouldn't--just that I can accept that there are things that I cannot do. I know all this sounds contradictory, but maybe you just have to live through it for it to make sense. I acknowledge that I am broken, but I also feel whole. I guess it would be more succinct to just say: I am thankful.
It's funny, my hands still don't look like my hands. It's been over a year since my fingers went all wonky. They don't look like they used to. Even on good days they're red and swollen and knobby. Mottled with reticularis. The skin is loose and shiny from being stretched out during flares. You'd think after almost a year and a half I'd be used to the look of these new hands, but I'm not. They're still weird hands. Bad hands. It's strange.
I finally received word that I have been approved for medicaid! Again. After their screw up. But it's back! So I have my back up insurance and that's a good thing. There have been a few other insurance debacles that I just can't even bare to go into. They involve hours on the phone and a bunch crying from me because I'm a wimp and get overwhelmed. Bottom line, I think things will be okay.
My condition has been pretty stable. Joints pop out, joints pop in. Muscle spasms. Standard EDS junk. Brain fog is in full force and nasty. It's hard to find the words I mean to say. It's like suddenly English is my second language and the vocab is hard to remember and everyday is a pop quiz. I've had a few flare ups of my autoimmune disease. At least I know now how to predict them. If I start getting splinter hemorrhages, I know I've got about a week until I lose use of my hands.
I think I've got Beau's lines on my fingernails that showed up during my last flare and that's weird. You know in cartoons when someone's hand gets slammed in a door or car trunk and when they take it out they've got this big dent in their hand? That's what my fingernails look like, except I didn't shut a door on them. I took pictures for my doc. I don't know what that means, but at least it's growing out.
I've lost weight. Not on purpose. More like I'm slightly concerned that I've lost weight. Nothing drastic, just 10 pounds but not on purpose. My appetite is riding pretty high. Sometimes I feel like I did on prednisone: I COULD EAT EVERYTHING! I try to keep things reasonable, but I'm not trying to drop more pounds even though I'm technically "overweight" and I bet my docs would probably like me another 10 pounds lighter. But whatever.
The point is that by dropping weight I'm now right on the edge of the dosage amount for Plaquenil. At my weight I should probably be taking half of what I'm on now. So, as I said before, my Rheumy has instructed me to drop down to half my normal dose at the end of June and see how it goes. The plaquenil has been working wonders for me. My last blood workup had me at almost normal ANA levels. It's really suppressing the disease. I'm worried about what will happen. It's a little scary. I'm worried the disease will come back on full force. I just want to stay the course I'm on. You know, without liver and kidney toxicity from too much plaquenil. That'd be great, thanks. While we're making requests, I'd also like some cheese fries. (See, there's that appetite thing again.)
I have a deck garden now. M is so good to me. She financed it and let me do all the dirty work. It's nice being a kept woman. It looks great and I love it. I am pretty content actually. I mean there are SO many things that I want to do that I can't: work, run, hike, drive, knit, etc; but still. With what I have, I feel so content and happy. The things that I want are out of reach for the time being and I'm starting to accept that but not in a way that I feel defeated. More in a way that I feel zen. So ignoring those wants and ignoring my ever present want for good health, I don't really want for anything right now.
I used to feel like I was missing huge chunks of my self. Like EDS and UCTD had taking big raw bites out of me and run away with them. But I don't anymore. I feel whole even with all my limitations. I used to feel like not enough of a person when I couldn't dress myself or open a bottle, but for the most part I just feel like a good, whole person. I still have my bad days, my bad moments when I mourn how dependent I am, how I just can't work a job no matter how hard I try or want to, how I just want to be well, but they pass. It's not like if I could do those things, I wouldn't--just that I can accept that there are things that I cannot do. I know all this sounds contradictory, but maybe you just have to live through it for it to make sense. I acknowledge that I am broken, but I also feel whole. I guess it would be more succinct to just say: I am thankful.
Friday, April 29, 2011
New Rheumy, Chilblains, & Test Results
Thankfully my primary care doc was able to make me an appointment with the other local Rheumatologist (Dr S). It wasn't much help with the flare up of my autoimmune disease that I was having at the time because by the time the appointment rolled around, my hands were back to "normal." The flare lasted about a month and was awful. But fine, he did see me.
He seems like a good doc. Not the warm, friendly type but seems to know his shit about autoimmune diseases and hasn't come off as knowing nothing about EDS so I'll take it. I explained about the extremely painful lumps I got on my fingers right before the flare up went to town and he thinks that I had chilblains. Chilblains! Shit! Oops. Apparently they are not uncommon for people with Raynaud's and that I need to keep warmer and use warm water, NOT HOT, to bring my hands back to life when they go all white and corpse-y. Eek! ...I will also completely stop my practice of squeezing the blood back up into my fingers when they take too long to come back. My bad.
He had me run bloodwork since I hadn't had an autoimmune workup since going on plaquenil. And I just got the results at my follow up and they're all good! Woohoo! All specific CTD markers were negative and even my ANA titer was only 1:160, down from my last 1:320 and way down from my initial 1:1280. It's basically normal which Dr. S is typical when going on a drug that suppresses the immune system like plaquenil.
In the next coming months, he wants to see how I do with halving my dose of plaquenil which to quote him, "Is a great drug...other than making people go blind." So I go down on my dose in about 2 months. He also gave me some prednisone to take in a small burst if I have another flare up so I won't be stuck on my own with nothing to help me. Which is awesome.
Then there's this whole other thing with my insurance company that just NOW decided to tell me that they don't cover pre-existing conditions.
"But you sound young so that's probably not a problem for you."
Ahahahahhaahahhhahahhahaha. Funny story. About that. WTF!!!??? So now I'm running around trying to get that waived. Which is, in fact, so stressful for me that I can't even blog about it because I will just start crying again. So that's that.
He seems like a good doc. Not the warm, friendly type but seems to know his shit about autoimmune diseases and hasn't come off as knowing nothing about EDS so I'll take it. I explained about the extremely painful lumps I got on my fingers right before the flare up went to town and he thinks that I had chilblains. Chilblains! Shit! Oops. Apparently they are not uncommon for people with Raynaud's and that I need to keep warmer and use warm water, NOT HOT, to bring my hands back to life when they go all white and corpse-y. Eek! ...I will also completely stop my practice of squeezing the blood back up into my fingers when they take too long to come back. My bad.
He had me run bloodwork since I hadn't had an autoimmune workup since going on plaquenil. And I just got the results at my follow up and they're all good! Woohoo! All specific CTD markers were negative and even my ANA titer was only 1:160, down from my last 1:320 and way down from my initial 1:1280. It's basically normal which Dr. S is typical when going on a drug that suppresses the immune system like plaquenil.
In the next coming months, he wants to see how I do with halving my dose of plaquenil which to quote him, "Is a great drug...other than making people go blind." So I go down on my dose in about 2 months. He also gave me some prednisone to take in a small burst if I have another flare up so I won't be stuck on my own with nothing to help me. Which is awesome.
Then there's this whole other thing with my insurance company that just NOW decided to tell me that they don't cover pre-existing conditions.
"But you sound young so that's probably not a problem for you."
Ahahahahhaahahhhahahhahaha. Funny story. About that. WTF!!!??? So now I'm running around trying to get that waived. Which is, in fact, so stressful for me that I can't even blog about it because I will just start crying again. So that's that.
Thursday, March 24, 2011
Turned away by new Rheumatologist. My day could be better.
Sorry for the radio silence. Here's where I am right now.
I moved a while back and I've been scrambling since to get my medical stuff in order. Got a new primary care doc, Dr. T, who I like. Got my meds transferred over to my new insurance.
I still haven't heard any news from the state of NH about my medicaid. So thank the gods for M's insurance or else I'd still be waiting for insurance from the state that I lost because of a false information snafu. My meds would have run out last month and I'd be a painful mess.
Here's my new problem. I've been meaning to get a new Rheumy since I moved but I put it off because all the medical running around tires me out. My old Rheumy, Dr. K, recommended someone local to me but I hadn't called.
My autoimmune disease is having a flare up. I had red lumps on my right index and pinky finger joints at first. Those seem to be gone but now those two fingers are so swollen they don't bend anymore. Right index finger is easily double the size of my left one. My pain and stiffness is up in the rest of my hands as well. So I called. Turns out this Dr. P won't make an appointment with someone until their medical records are sent over for her to review. I didn't like that right away. It felt like I was auditioning to have a doctor. I called the other Rheumy close by and he does the same thing.
So fine. I had my records sent over to Dr. P and today I got a call. She has looked over my records won't be taking on my care. She strongly recommends that I stay with Dr. K.
What? First off. What the hell? Secondly, stay with Dr. K? Who is over 2 hours away? And books 5-6 months out? For this flare up I'm having now? I can't work, I can't drive. Travel is expensive. My benefits cover my half of the bills with about 30 bucks left over. Travel is also extremely painful. Taking the bus the 1 hour ride to Tufts before would knock me out for almost a week after the fact. My joints just can't take it. So now we double that? Sure, this sounds like great advice, doc! I was having an okay day, but now I'm a weepy mess. Fantastic.
Is my disease that weird that you just don't want to deal with it? I know UCTD is complicated. It's not set in stone. It changes, it varies. Sort of like EDS. Manifests differently for each of us. But seriously. What. the. fuck. Pardon me, but grow a set, doc. You don't even have to figure out what it is. I told you what it is. Just help me if it gets worse.
I may have confusing conditions, but I'm a good patient. Friendly, smiley and generally compliant. Plus, I'm cute and small and fit easily into most overhead compartments.
To me, I seem like a patient jackpot. I'm a privately insured nice person with a chronic disease that will require lots of tests that need to be periodically repeated and will need to be seen more often than most. I thought doctors liked money.
I'm sure there is a reason for Dr P to reject me like this. I know that probably she thinks that I'll get better care for my crazy-ass disease at a top notch place like Tufts. But right now that doesn't help me. I'm in pain and not getting help, so it's hard for me to give a damn about the logical reasons of why she made this decision.
Anyway. I'm upset. And I'm tired. And my hands don't work. Dr. T's office called once they had heard what happened and at least they were understanding that Boston is a haul for me and sort of out of the question. They're trying to set something up for me with someone else in the area. Have to wait for a phone call. So I hope. It's a thing I have to remind myself to do. I pray and I hope.
I moved a while back and I've been scrambling since to get my medical stuff in order. Got a new primary care doc, Dr. T, who I like. Got my meds transferred over to my new insurance.
I still haven't heard any news from the state of NH about my medicaid. So thank the gods for M's insurance or else I'd still be waiting for insurance from the state that I lost because of a false information snafu. My meds would have run out last month and I'd be a painful mess.
Here's my new problem. I've been meaning to get a new Rheumy since I moved but I put it off because all the medical running around tires me out. My old Rheumy, Dr. K, recommended someone local to me but I hadn't called.
My autoimmune disease is having a flare up. I had red lumps on my right index and pinky finger joints at first. Those seem to be gone but now those two fingers are so swollen they don't bend anymore. Right index finger is easily double the size of my left one. My pain and stiffness is up in the rest of my hands as well. So I called. Turns out this Dr. P won't make an appointment with someone until their medical records are sent over for her to review. I didn't like that right away. It felt like I was auditioning to have a doctor. I called the other Rheumy close by and he does the same thing.
So fine. I had my records sent over to Dr. P and today I got a call. She has looked over my records won't be taking on my care. She strongly recommends that I stay with Dr. K.
What? First off. What the hell? Secondly, stay with Dr. K? Who is over 2 hours away? And books 5-6 months out? For this flare up I'm having now? I can't work, I can't drive. Travel is expensive. My benefits cover my half of the bills with about 30 bucks left over. Travel is also extremely painful. Taking the bus the 1 hour ride to Tufts before would knock me out for almost a week after the fact. My joints just can't take it. So now we double that? Sure, this sounds like great advice, doc! I was having an okay day, but now I'm a weepy mess. Fantastic.
Is my disease that weird that you just don't want to deal with it? I know UCTD is complicated. It's not set in stone. It changes, it varies. Sort of like EDS. Manifests differently for each of us. But seriously. What. the. fuck. Pardon me, but grow a set, doc. You don't even have to figure out what it is. I told you what it is. Just help me if it gets worse.
I may have confusing conditions, but I'm a good patient. Friendly, smiley and generally compliant. Plus, I'm cute and small and fit easily into most overhead compartments.
To me, I seem like a patient jackpot. I'm a privately insured nice person with a chronic disease that will require lots of tests that need to be periodically repeated and will need to be seen more often than most. I thought doctors liked money.
I'm sure there is a reason for Dr P to reject me like this. I know that probably she thinks that I'll get better care for my crazy-ass disease at a top notch place like Tufts. But right now that doesn't help me. I'm in pain and not getting help, so it's hard for me to give a damn about the logical reasons of why she made this decision.
Anyway. I'm upset. And I'm tired. And my hands don't work. Dr. T's office called once they had heard what happened and at least they were understanding that Boston is a haul for me and sort of out of the question. They're trying to set something up for me with someone else in the area. Have to wait for a phone call. So I hope. It's a thing I have to remind myself to do. I pray and I hope.
Monday, January 31, 2011
Too Much Snow
Figured I'd update this thing before the next storm knocks me on my ass yet again. (We're looking at 20+ inches in the next two days. UGH.)
My visit with Dr. T went great. We went over my medical history and he gave me refills on the meds I don't get through the mail. He was nice and soft-spoken and a good listener.
The thing that stuck out most to me is that he didn't make me feel like a circus freak. Once most docs see the "frequent dislocations" thing, they start requesting me to do the tricks, the clicks, the thunks, the bends, the twists. And then, of course, they say I shouldn't be doing those things since it's bad for my joints. Right. As long as it's not for you. But Dr. T didn't go asking me to bend all my bendy bits.
So either:
A. That's not his style because he's Canadian and super-chill. (We Americans think Canadians are all super-chill and cool.)
or B. He doesn't quite know what EDS is and was opting to do his own research at a later time and catch up with me at my follow up.
I wouldn't blame him. I came in with a huge mofo of a stack of records and a laundry list of conditions that he didn't have time before my appointment to go over. But overall, I like him and at the very least he seems really low-stress. Yay!
He is making me go on ANOTHER medication and get a bunch of vaccinations though. Apparently, he doesn't like that I'm not on something to protect my stomach since I've been on 1000mg of naprosyn a day for a few years and will likely never be able to come off it unless I go on something else different/stronger. Bleeding ulcers are a big risk and the risk just goes up. So I'm taking prevacid now. Bringing my good-day pill count up to 12. I am made of pills! XD
Also I'm apparently immuno-compromised enough from the plaquenil that I need to get a flu shot, a pneumonia vaccine, and a tetanus shot. So I got my first ever flu shot which was no big deal. Still need to get the others.
Okay, need to stop typing now. Just wanted to update this thing before the snow starts up again. Best of luck to all of those getting hit by the storm and to everyone else in general who needs it.
My visit with Dr. T went great. We went over my medical history and he gave me refills on the meds I don't get through the mail. He was nice and soft-spoken and a good listener.
The thing that stuck out most to me is that he didn't make me feel like a circus freak. Once most docs see the "frequent dislocations" thing, they start requesting me to do the tricks, the clicks, the thunks, the bends, the twists. And then, of course, they say I shouldn't be doing those things since it's bad for my joints. Right. As long as it's not for you. But Dr. T didn't go asking me to bend all my bendy bits.
So either:
A. That's not his style because he's Canadian and super-chill. (We Americans think Canadians are all super-chill and cool.)
or B. He doesn't quite know what EDS is and was opting to do his own research at a later time and catch up with me at my follow up.
I wouldn't blame him. I came in with a huge mofo of a stack of records and a laundry list of conditions that he didn't have time before my appointment to go over. But overall, I like him and at the very least he seems really low-stress. Yay!
He is making me go on ANOTHER medication and get a bunch of vaccinations though. Apparently, he doesn't like that I'm not on something to protect my stomach since I've been on 1000mg of naprosyn a day for a few years and will likely never be able to come off it unless I go on something else different/stronger. Bleeding ulcers are a big risk and the risk just goes up. So I'm taking prevacid now. Bringing my good-day pill count up to 12. I am made of pills! XD
Also I'm apparently immuno-compromised enough from the plaquenil that I need to get a flu shot, a pneumonia vaccine, and a tetanus shot. So I got my first ever flu shot which was no big deal. Still need to get the others.
Okay, need to stop typing now. Just wanted to update this thing before the snow starts up again. Best of luck to all of those getting hit by the storm and to everyone else in general who needs it.
Thursday, January 20, 2011
I got the New Doctor Nerves
Nervous nervous nervous! Today I'm meeting with my new Primary Care Doc, Dr. T. I was really sad to lose my old PC since we was probably the best doctor I've ever had.
My fellow bendy folks out there know what I'm talking about.
I had Dr. B broken in. He understood the EDS as this rare condition I have as opposed to other docs who looked at me and called my symptoms impossible and dismissed me as attention seeking. UGH. And I don't want to go through it again. My mistrust of doctors is pretty stupidly deep. And I'm tired of it. I just want to find a good doctor, attach my suction pads too him so he can never move or retire, so he can be my White Knight against the rest of the world. Because it was absolutely amazing the kind of turn around my medical care had once I found Dr. B.
I would tell doctors, "I keep dislocating my joints. Um, help? Please?"
And they'd go, "You can't do that! Crazy person alert!"
But Dr. B said, "Oh my. You ARE dislocating your joints! Diagnosing you!"
AND Dr. B would also say, "Hey other doctor! This girl is dislocating her joints. Could you help?"
And they'd say, "Oh dear! Dislocating joints? Neat-o! Let me see what I can do!"
So I'm nervous. I just want another one of those. I have a friend who sees Dr. T and said he's super chill so I have high hopes and I'll be going armed with the best weapon I have--my wifey. Right now I'm copying something like 100 pages of medical records. Sorry trees!
I talked to Dr. K from Tufts. He doesn't like how bad my hands have been in the past few weeks. Said he might consider putting me on MTX but we'd need to meet to go over things before that. At this point I am opting out of treatment with MTX. Yes indeedy. I'm okay to not go on chemotherapy just yet. I don't think things are that that awful bad right now.
I just think my body really hates winter. We keep getting blasted by snow and ice storms and my joints are feeling every bit of it. I'm so done with winter. Okay, Spring. You can come out now! I expect once the weather warms back up that my hands will be back to how good they were in the fall.
Which is still pretty sucky for a normal person, but I'll take what I can get with a big-ass smile.
My fellow bendy folks out there know what I'm talking about.
I had Dr. B broken in. He understood the EDS as this rare condition I have as opposed to other docs who looked at me and called my symptoms impossible and dismissed me as attention seeking. UGH. And I don't want to go through it again. My mistrust of doctors is pretty stupidly deep. And I'm tired of it. I just want to find a good doctor, attach my suction pads too him so he can never move or retire, so he can be my White Knight against the rest of the world. Because it was absolutely amazing the kind of turn around my medical care had once I found Dr. B.
I would tell doctors, "I keep dislocating my joints. Um, help? Please?"
And they'd go, "You can't do that! Crazy person alert!"
But Dr. B said, "Oh my. You ARE dislocating your joints! Diagnosing you!"
AND Dr. B would also say, "Hey other doctor! This girl is dislocating her joints. Could you help?"
And they'd say, "Oh dear! Dislocating joints? Neat-o! Let me see what I can do!"
So I'm nervous. I just want another one of those. I have a friend who sees Dr. T and said he's super chill so I have high hopes and I'll be going armed with the best weapon I have--my wifey. Right now I'm copying something like 100 pages of medical records. Sorry trees!
I talked to Dr. K from Tufts. He doesn't like how bad my hands have been in the past few weeks. Said he might consider putting me on MTX but we'd need to meet to go over things before that. At this point I am opting out of treatment with MTX. Yes indeedy. I'm okay to not go on chemotherapy just yet. I don't think things are that that awful bad right now.
I just think my body really hates winter. We keep getting blasted by snow and ice storms and my joints are feeling every bit of it. I'm so done with winter. Okay, Spring. You can come out now! I expect once the weather warms back up that my hands will be back to how good they were in the fall.
Which is still pretty sucky for a normal person, but I'll take what I can get with a big-ass smile.
Friday, January 14, 2011
How do you push with negative leverage?
I'm writing today to ask you take a few minutes of your day to take a look at this blog: One Month Before Heartbreak.
One month from today Parliment will be slashing Britain's DLA (Disability Living Allowance). Valentine's Day. As I live in the US, this will not directly affect me in a financial matter, but I am strong affected nonetheless. For those of us in the US, this would be like Congress deciding to ditch Social Security and implement a whole new system.
From what I have read, the new system plans on cutting DLA from 25% of those who receive despite the numbers of those defrauding the system being something like 3%. So that's 22% of of the people who require financial help from the government to live, as deemed so by that government, who will be dropped.
We are the one group who can't fight back like others. I get excited when I can put my socks on in the morning--I'm not in a position to participate in a march or a rally. I can't stand outside a government building holding a sign. I can't stand in a crowd so the media can show how many people will be affected. When nurses or teachers have their pay cut, they can strike and people feel the lack pretty quickly. What can we do?
I am disabled. I am a "drain on the system." Am I just some lazy bum, who isn't really that sick? Hell no, I am not. There isn't much I'd like more than to be able to work. Would the US economy be the tiniest bit better if I didn't exist? Sure. Does that give the world the right to ditch me? Is that the message we want to send? Because anyone can be hit by a drunk driver or develop an incurable disease and suddenly find themselves unable to make rent. Sure, it's inconvenient for everyone else that there are people who need to be cared for, but wouldn't it be even more inconvenient to find you suddenly are unable to tie your shoes at the age of 23?
Really I can only speak from my experience of applying for both state and federal aid in America. If you haven't gone through it, you can't understand it.
What's the big deal. It's just filling out a few forms, right?
Well no, not really. First off, it's letting go of the hope that maybe things will be better next week. Maybe next year you will be feeling better. Maybe you'll be able to work in a few months. You just hit a rough patch, it won't last. At least in the next 5 years you'll finally be better. You have to admit to yourself that's not the case. That you can't and you won't and you need help.
So, yeah, you fill out the forms. Most aren't hard forms in terms of intellectual difficulty, but it's never easy putting down, income for the past month? $0.
For the past year $0.
Do doctors believe your condition will ever improve? No.
And then there are the hard forms. The 40 pages of invasive questions.
Describe everything you do on a typical day.
Do you have difficulty using the toilet? How?
Can you cook for yourself?
Make a list of things you used to be able to do, but can't anymore.
They need to know everything you do and it makes me feel overly exposed. Just try to stay positive while highlight just how awful your situation is. Rubbing lemon juice on the wound. I've done nothing wrong, but it makes me feel like a criminal. My old case worker often accused me of lying and would put down different information than what I had said.
Then there are the phone calls. I am terrified to pick up the phone when it rings. My heart leaps into my throat every time without fail. It's going to be someone who wants to talk to me in cold, disinterested tone about this thing, this disease, this condition that has turned my life upside-down. But to them it is just paperwork.
I live in fear of more paperwork coming in. A denial, a change, a glitch, yet another form. Going to court to appeal the decision. I was "lucky" in that I was deemed so sick I didn't need to have a medical exam by their doctors.
And once you've been approved, it doesn't really end. They reevaluate every so often.
Now--everyone in Britain who has fought this battle and finally won, would have start all over. Jump though different hoops with the knowledge that they plan on cutting a fourth of you. This is unacceptable.
My heart goes out to all of you that will be directly affected by this.
One month from today Parliment will be slashing Britain's DLA (Disability Living Allowance). Valentine's Day. As I live in the US, this will not directly affect me in a financial matter, but I am strong affected nonetheless. For those of us in the US, this would be like Congress deciding to ditch Social Security and implement a whole new system.
From what I have read, the new system plans on cutting DLA from 25% of those who receive despite the numbers of those defrauding the system being something like 3%. So that's 22% of of the people who require financial help from the government to live, as deemed so by that government, who will be dropped.
We are the one group who can't fight back like others. I get excited when I can put my socks on in the morning--I'm not in a position to participate in a march or a rally. I can't stand outside a government building holding a sign. I can't stand in a crowd so the media can show how many people will be affected. When nurses or teachers have their pay cut, they can strike and people feel the lack pretty quickly. What can we do?
I am disabled. I am a "drain on the system." Am I just some lazy bum, who isn't really that sick? Hell no, I am not. There isn't much I'd like more than to be able to work. Would the US economy be the tiniest bit better if I didn't exist? Sure. Does that give the world the right to ditch me? Is that the message we want to send? Because anyone can be hit by a drunk driver or develop an incurable disease and suddenly find themselves unable to make rent. Sure, it's inconvenient for everyone else that there are people who need to be cared for, but wouldn't it be even more inconvenient to find you suddenly are unable to tie your shoes at the age of 23?
Really I can only speak from my experience of applying for both state and federal aid in America. If you haven't gone through it, you can't understand it.
What's the big deal. It's just filling out a few forms, right?
Well no, not really. First off, it's letting go of the hope that maybe things will be better next week. Maybe next year you will be feeling better. Maybe you'll be able to work in a few months. You just hit a rough patch, it won't last. At least in the next 5 years you'll finally be better. You have to admit to yourself that's not the case. That you can't and you won't and you need help.
So, yeah, you fill out the forms. Most aren't hard forms in terms of intellectual difficulty, but it's never easy putting down, income for the past month? $0.
For the past year $0.
Do doctors believe your condition will ever improve? No.
And then there are the hard forms. The 40 pages of invasive questions.
Describe everything you do on a typical day.
Do you have difficulty using the toilet? How?
Can you cook for yourself?
Make a list of things you used to be able to do, but can't anymore.
They need to know everything you do and it makes me feel overly exposed. Just try to stay positive while highlight just how awful your situation is. Rubbing lemon juice on the wound. I've done nothing wrong, but it makes me feel like a criminal. My old case worker often accused me of lying and would put down different information than what I had said.
Then there are the phone calls. I am terrified to pick up the phone when it rings. My heart leaps into my throat every time without fail. It's going to be someone who wants to talk to me in cold, disinterested tone about this thing, this disease, this condition that has turned my life upside-down. But to them it is just paperwork.
I live in fear of more paperwork coming in. A denial, a change, a glitch, yet another form. Going to court to appeal the decision. I was "lucky" in that I was deemed so sick I didn't need to have a medical exam by their doctors.
And once you've been approved, it doesn't really end. They reevaluate every so often.
Now--everyone in Britain who has fought this battle and finally won, would have start all over. Jump though different hoops with the knowledge that they plan on cutting a fourth of you. This is unacceptable.
My heart goes out to all of you that will be directly affected by this.
Monday, December 20, 2010
Perspective can really screw with you
It's snowing outside right now. Winter is really here and I've been feeling it in my joints and hands. My fingers keep dislocating today which I figure really should be impossible with how swollen they are. I can barely bend them--how can they bend out of place on with the tiniest pressure?
I'm losing ground on my hands. It's because of the winter, I know. I wake up too early and turn over, reach to bring the blankets with me and there it is: my fingers don't bend. I can't grab the blanket. My hands is just this throbbing paddle. Like a little, "Good morning. You have this disease, remember?" And right now that freaks me out. It didn't a month ago. But a month ago, I could use my fingers before 2pm. I'm full up on anti--inflamatories, epilepsy drugs, and malaria cures but winter is bringing in the breakthrough stiffness. I'm sure it will go away, but I'm just buckling down for a rough ride 'til spring.
And I don't have a doctor yet. I know I should probably make that call soon, but I just keep putting it off. I keep hearing the bad doctors in my head. I'm not in the mood to train another one to listen to me.
I had my meeting with Human Services. They needed me to fill out a bunch of paperwork, but I could barely hold a pen. She spent time filling it out for me, so all I had to do was sign. They gave me emergency funding to get through the month because of the stupid SSI debacle. Now it's just more waiting.
My friend recently posted on Facebook a picture of her hand with a bandaid on the tip of her ring finger. Her post read, "My double finger scroll finger is out of commission. Never realizing how often I did this before; I am amazed by my right hand ring finger's importance. Show some appreciation to this finger today Mac users."
I read that and I couldn't stop laughing. It seemed so ridiculous. Like if Paris Hilton were to post about having to wear the same pair of jeans twice and really gaining perspective from it.
And then I couldn't stop crying. It's funny how my little Pity Pigmy only sneaks out of the cell I've locked him into when I remember that things aren't like this for other people. I forget and think this is just how things are. That my body isn't that messed up, but I guess I kind of am. And other people aren't like this. That losing one finger can really throw off someone's day. Appreciate everything, everyone.
All I want to do right now is do things with my hands. As soon as they start moving in the afternoon it's time for stretches and exercises, then I crochet until they swell up again at night. It's like I need to make things out of nothing. Need to take a ball of yarn and make something that will keep my wife warm. Need to take a pile of old newspapers and flour and water and build things. I know it's transparent in motive but it's a very strong need. I'll hopefully have some pictures posted soon of my cripply creations.
Trying to stay positive like the rest of my bendy buddies. I really wish I could find a bendy group near me. Sometimes it feels hard to hold each other up from afar.
I'm losing ground on my hands. It's because of the winter, I know. I wake up too early and turn over, reach to bring the blankets with me and there it is: my fingers don't bend. I can't grab the blanket. My hands is just this throbbing paddle. Like a little, "Good morning. You have this disease, remember?" And right now that freaks me out. It didn't a month ago. But a month ago, I could use my fingers before 2pm. I'm full up on anti--inflamatories, epilepsy drugs, and malaria cures but winter is bringing in the breakthrough stiffness. I'm sure it will go away, but I'm just buckling down for a rough ride 'til spring.
And I don't have a doctor yet. I know I should probably make that call soon, but I just keep putting it off. I keep hearing the bad doctors in my head. I'm not in the mood to train another one to listen to me.
I had my meeting with Human Services. They needed me to fill out a bunch of paperwork, but I could barely hold a pen. She spent time filling it out for me, so all I had to do was sign. They gave me emergency funding to get through the month because of the stupid SSI debacle. Now it's just more waiting.
My friend recently posted on Facebook a picture of her hand with a bandaid on the tip of her ring finger. Her post read, "My double finger scroll finger is out of commission. Never realizing how often I did this before; I am amazed by my right hand ring finger's importance. Show some appreciation to this finger today Mac users."
I read that and I couldn't stop laughing. It seemed so ridiculous. Like if Paris Hilton were to post about having to wear the same pair of jeans twice and really gaining perspective from it.
And then I couldn't stop crying. It's funny how my little Pity Pigmy only sneaks out of the cell I've locked him into when I remember that things aren't like this for other people. I forget and think this is just how things are. That my body isn't that messed up, but I guess I kind of am. And other people aren't like this. That losing one finger can really throw off someone's day. Appreciate everything, everyone.
All I want to do right now is do things with my hands. As soon as they start moving in the afternoon it's time for stretches and exercises, then I crochet until they swell up again at night. It's like I need to make things out of nothing. Need to take a ball of yarn and make something that will keep my wife warm. Need to take a pile of old newspapers and flour and water and build things. I know it's transparent in motive but it's a very strong need. I'll hopefully have some pictures posted soon of my cripply creations.
Trying to stay positive like the rest of my bendy buddies. I really wish I could find a bendy group near me. Sometimes it feels hard to hold each other up from afar.
Thursday, December 2, 2010
Never been anywhere
As I posted in my last entry, I have no health insurance because I was given false information from a Social Security rep (mainly that I wouldn't lose my health care) and the overall response from every agency I have spoken to (Social Security, local Social Services, & a legal agency) has been a unanimous, "That's too bad. Oh well."
So now I am reapplying for Medicaid. I got a letter that I need to have a meeting at the local Social Services building. It's during normal business hours, meaning all my friends work and can't take me. But I have to get there.
I'm new in the state, disabled, and trying to figure this shit out. Phone calls ahoy!
The local health center that has a transportation service can't drive me there because it's not a doctor's appointment.
The other local transportation service for the disabled only takes people who have Medicaid cards.
There is a bus I could take from the bottom of my street to a restaurant on the street the building is on. The buses are handicap friendly. But I have to get to the bus stop. From my place it's 0.6 miles to the bus and it will drop me 0.6 miles from the building I need to get to.
For someone in a wheelchair in New England December, that's a fucking long way. Not to mention the way back would be a very steep hill. And I don't know if you've ever tried to wheel a chair uphill with two bum shoulders and almost no grip strength in your hands but it's a really sucky way to spend the next 4 hours.
I could take a cab. With what money? I'm still on my "continuing rate" from my last residence (an amount totally inaccurate because of a my dolt of a case worker, but that's another, "Oh well") so my monthly benefits are $40 less than my half of the rent for the month. Forget bills and food. So cab fare? For a 20 min ride? Both ways? I considered calling a cab to take me to bus stop then taking the bus to the next stop and calling another cab to take me the last 0.6 miles but this seems insane.
There is a system in the bus company to help disabled people get to and from the bus stop--if you carry a Medicaid card.
If I was all alone, I don't know what would do. As it is, I'll be okay--someone is taking me to my appointment. Not sure who right now but, one of my amazing friends will take off from work to get me there. I feel pretty awful about it.
I have never been anywhere on my own. Ever. It's embarrassing. I really have no independence. Never been able to drive anywhere alone and now I can't drive. Never walked anywhere. Never taken public transport on my own because I fall, I dislocate, I get too dizzy to see, my arms and hands get too painful to wheel, and I generally need help all the time. That's hard for me to admit. I didn't think about it until this whole episode. And it kind of hurts to have that come to the surface.
It's amazing how much applying for help really makes me feel like shit. Just as Benefit Scrounging Scum wrote in her most recent blog, it's really damn hard to have to, "justify how absolutely, utterly shit you, everything about you and your entire existence is."
But the truth is there is no system for people like us. They think there is. We assume there is. There kind of is, but it's made by people who don't have to use it. So they miss things. They don't quite get it right.
It's really scary to me that I've never been anywhere alone. Like I'm missing out on some major passage in life. Like I'm really just this big scared baby--even though I know that it's not true. I know that I'm a strong person but for some reason those two things--being strong and having no independence--clash in my mind.
So now I am reapplying for Medicaid. I got a letter that I need to have a meeting at the local Social Services building. It's during normal business hours, meaning all my friends work and can't take me. But I have to get there.
I'm new in the state, disabled, and trying to figure this shit out. Phone calls ahoy!
The local health center that has a transportation service can't drive me there because it's not a doctor's appointment.
The other local transportation service for the disabled only takes people who have Medicaid cards.
There is a bus I could take from the bottom of my street to a restaurant on the street the building is on. The buses are handicap friendly. But I have to get to the bus stop. From my place it's 0.6 miles to the bus and it will drop me 0.6 miles from the building I need to get to.
For someone in a wheelchair in New England December, that's a fucking long way. Not to mention the way back would be a very steep hill. And I don't know if you've ever tried to wheel a chair uphill with two bum shoulders and almost no grip strength in your hands but it's a really sucky way to spend the next 4 hours.
I could take a cab. With what money? I'm still on my "continuing rate" from my last residence (an amount totally inaccurate because of a my dolt of a case worker, but that's another, "Oh well") so my monthly benefits are $40 less than my half of the rent for the month. Forget bills and food. So cab fare? For a 20 min ride? Both ways? I considered calling a cab to take me to bus stop then taking the bus to the next stop and calling another cab to take me the last 0.6 miles but this seems insane.
There is a system in the bus company to help disabled people get to and from the bus stop--if you carry a Medicaid card.
If I was all alone, I don't know what would do. As it is, I'll be okay--someone is taking me to my appointment. Not sure who right now but, one of my amazing friends will take off from work to get me there. I feel pretty awful about it.
I have never been anywhere on my own. Ever. It's embarrassing. I really have no independence. Never been able to drive anywhere alone and now I can't drive. Never walked anywhere. Never taken public transport on my own because I fall, I dislocate, I get too dizzy to see, my arms and hands get too painful to wheel, and I generally need help all the time. That's hard for me to admit. I didn't think about it until this whole episode. And it kind of hurts to have that come to the surface.
It's amazing how much applying for help really makes me feel like shit. Just as Benefit Scrounging Scum wrote in her most recent blog, it's really damn hard to have to, "justify how absolutely, utterly shit you, everything about you and your entire existence is."
But the truth is there is no system for people like us. They think there is. We assume there is. There kind of is, but it's made by people who don't have to use it. So they miss things. They don't quite get it right.
It's really scary to me that I've never been anywhere alone. Like I'm missing out on some major passage in life. Like I'm really just this big scared baby--even though I know that it's not true. I know that I'm a strong person but for some reason those two things--being strong and having no independence--clash in my mind.
Monday, November 22, 2010
So that's how you raise low blood pressure.
Funny story:
So, as I mentioned, there was a sudden moving happening. M was made a fantastic job offer and had 2 weeks to find an apartment, move, and start work. Yikes. HUSTLE TIME
Originally, while her new job is in NH, we decided to move to a place in MA so there wouldn't be any change over in my benefits, no crazy paperwork, no lapse in medical care, and I could keep all my doctors.
But then we redid all our finances this time including MA taxes and ugh--it didn't look like we'd be able to afford much of anything as far as a place goes. Especially considering the gas needed for M's 30 minute highway commute. I didn't like it. We visited the town with the shortest commute. We both hated it, but didn't say anything.
So I decided to do some checking around to see how hard it would be for me to move to NH. The internet was damn useless. The Social Security website was impenetrable. I called my case worker at the local Social Security office, but I didn't hear back from her for days. And this shit was moving fast. Needed to know now. I ended up calling the general 1-800 number for Social Security and jumped through all the necessary hoops to talk to an actual person.
I got a hold of a guy named Cedric. Nice guy. I asked him exactly what I'd need to do to move--just how hard it is, what benefits I'd be losing, how I'd get health care. Cedric looked over my case file. Told me that I was getting X amount from the federal government and x amount from the state of MA. Leaving MA would mean I'd lose that smaller amount, but that NH would provide x amount so the overall difference would be me receiving $45 less a month. We could swing that.
As far as health insurance, his answer was a godsend. He told me that as long as I was receiving federal disability benefits, I would be covered medically anywhere. His example, "You could move to Nevada tomorrow and as long as you gave us a call to let us know once you got there, we'd send you out a new Medicaid card in the mail."
I was in shock. I made him repeat this info about 5 times because I just couldn't believe it. Including making him double check my file that I get SSDI (I do) in case I had gone crazy and made that up. I'm pretty sure I cried a bit. I mean, sure I probably wouldn't be able to see my doctors (never know though) but we could move wherever we wanted! Close to her work! Not in a crappy town! Best news of the week! I told everyone!
We found an awesome place and we moved. I'm here now. It's a totally awesome apartment. We love it. Great town. All birch trees and train whistles.
Right in between signing the lease and the actually moving date, I finally get a call from my case worker. I let her know about the move and we go over the math again. She reads me back incorrect information about my current living status. Info that led to me getting much less than I should have been getting. We correct that--woohoo! Then she factors in the moving info--higher rent, more bills, "But, it's New Hampshire," so the final number is $100 less than my original number in MA before the correction. How the hell? She basically hangs up on me. I freak a bit. But M assures me we can still swing it financially.
We move. Ouch on the joints, but great to be in a new place.
Then I call to check in with the NH Social Security office to double check on that $100 loss I've got. We go back over the numbers. Apparently my old case worker was a complete mush brain. She put the total amount of rent in the space for how much M was paying, my half of the rent in the slot for my total expenses, and somehow had it down that M was paying me $250 a month for food. WTF? This new woman fixed all that and now I will be getting the correct amount which is more than originally! Woohoo! Good news!
Then she wants to make sure that I know that by moving into NH, I have lost my health insurance. What? No, in fact, I didn't know that. Being told the opposite was the REASON we moved here.
Well, most states will automatically give you Medicaid if the federal government has deemed you disabled. Not New Hampshire. Live free or die. They require you to reapply for state Medicaid. On a good case, that's a 3 month process.
I called their department and literally gave them a sob story because by then I was in full panic mode. They told me to send in an application. I did.
Apparently even though I was given false information by a federal employee which led me to lose my health care, I have no other recourse.
Bendy-person NOT happy. Bendy-person has rage.
I might not be so mad if I wasn't sick. This isn't like saying, okay just be sure not to break your leg for 3 months, healthy guy! I have these things called incurable conditions/diseases. They are degenerative. I'd rather not let them run rampant.
I guess I am just really mad because they don't seem to or are not allowed to give a damn. Disabled, generally means needs to see doctors, asshole. I'll be okay because luckily I got a mega-shit-ton worth of my meds to last me through the move and finding new doctors, but not everyone can do that. I got practically tricked into this situation. What if someone needed constant treatment like chemo and they got put in this situation. Then what? They wait 3 months and hope because, "oh well that's really too bad--I'm sorry, but that guy didn't know what he was talking about"? That makes me hella blood-boiling mad.
Deep breath. I know that I will be okay. I'm crazy stubborn and can tough this out. There is a chance I'll be able to go on M's insurance once she gets it through her new job. Just depends if they don't deny more for being super-crippley.
(I'm not really telling people about this. I guess I'm too scared about the whole thing. I don't want people to know that it's happening. Maybe once it's over and I'm covered again. So those of you who know me in "Real Life," [all two of you, I think], would you mind not spreading this around?)
I'm sure that this is for the best somehow. That living in MA would have led to something worse happening. That I had to be lied to get up here. That where we live is where we belong. I have enough faith to believe that. It pays to be a crunchy pantheist. But I'm still mad.
So, as I mentioned, there was a sudden moving happening. M was made a fantastic job offer and had 2 weeks to find an apartment, move, and start work. Yikes. HUSTLE TIME
Originally, while her new job is in NH, we decided to move to a place in MA so there wouldn't be any change over in my benefits, no crazy paperwork, no lapse in medical care, and I could keep all my doctors.
But then we redid all our finances this time including MA taxes and ugh--it didn't look like we'd be able to afford much of anything as far as a place goes. Especially considering the gas needed for M's 30 minute highway commute. I didn't like it. We visited the town with the shortest commute. We both hated it, but didn't say anything.
So I decided to do some checking around to see how hard it would be for me to move to NH. The internet was damn useless. The Social Security website was impenetrable. I called my case worker at the local Social Security office, but I didn't hear back from her for days. And this shit was moving fast. Needed to know now. I ended up calling the general 1-800 number for Social Security and jumped through all the necessary hoops to talk to an actual person.
I got a hold of a guy named Cedric. Nice guy. I asked him exactly what I'd need to do to move--just how hard it is, what benefits I'd be losing, how I'd get health care. Cedric looked over my case file. Told me that I was getting X amount from the federal government and x amount from the state of MA. Leaving MA would mean I'd lose that smaller amount, but that NH would provide x amount so the overall difference would be me receiving $45 less a month. We could swing that.
As far as health insurance, his answer was a godsend. He told me that as long as I was receiving federal disability benefits, I would be covered medically anywhere. His example, "You could move to Nevada tomorrow and as long as you gave us a call to let us know once you got there, we'd send you out a new Medicaid card in the mail."
I was in shock. I made him repeat this info about 5 times because I just couldn't believe it. Including making him double check my file that I get SSDI (I do) in case I had gone crazy and made that up. I'm pretty sure I cried a bit. I mean, sure I probably wouldn't be able to see my doctors (never know though) but we could move wherever we wanted! Close to her work! Not in a crappy town! Best news of the week! I told everyone!
We found an awesome place and we moved. I'm here now. It's a totally awesome apartment. We love it. Great town. All birch trees and train whistles.
Right in between signing the lease and the actually moving date, I finally get a call from my case worker. I let her know about the move and we go over the math again. She reads me back incorrect information about my current living status. Info that led to me getting much less than I should have been getting. We correct that--woohoo! Then she factors in the moving info--higher rent, more bills, "But, it's New Hampshire," so the final number is $100 less than my original number in MA before the correction. How the hell? She basically hangs up on me. I freak a bit. But M assures me we can still swing it financially.
We move. Ouch on the joints, but great to be in a new place.
Then I call to check in with the NH Social Security office to double check on that $100 loss I've got. We go back over the numbers. Apparently my old case worker was a complete mush brain. She put the total amount of rent in the space for how much M was paying, my half of the rent in the slot for my total expenses, and somehow had it down that M was paying me $250 a month for food. WTF? This new woman fixed all that and now I will be getting the correct amount which is more than originally! Woohoo! Good news!
Then she wants to make sure that I know that by moving into NH, I have lost my health insurance. What? No, in fact, I didn't know that. Being told the opposite was the REASON we moved here.
Well, most states will automatically give you Medicaid if the federal government has deemed you disabled. Not New Hampshire. Live free or die. They require you to reapply for state Medicaid. On a good case, that's a 3 month process.
I called their department and literally gave them a sob story because by then I was in full panic mode. They told me to send in an application. I did.
Apparently even though I was given false information by a federal employee which led me to lose my health care, I have no other recourse.
Bendy-person NOT happy. Bendy-person has rage.
I might not be so mad if I wasn't sick. This isn't like saying, okay just be sure not to break your leg for 3 months, healthy guy! I have these things called incurable conditions/diseases. They are degenerative. I'd rather not let them run rampant.
I guess I am just really mad because they don't seem to or are not allowed to give a damn. Disabled, generally means needs to see doctors, asshole. I'll be okay because luckily I got a mega-shit-ton worth of my meds to last me through the move and finding new doctors, but not everyone can do that. I got practically tricked into this situation. What if someone needed constant treatment like chemo and they got put in this situation. Then what? They wait 3 months and hope because, "oh well that's really too bad--I'm sorry, but that guy didn't know what he was talking about"? That makes me hella blood-boiling mad.
Deep breath. I know that I will be okay. I'm crazy stubborn and can tough this out. There is a chance I'll be able to go on M's insurance once she gets it through her new job. Just depends if they don't deny more for being super-crippley.
(I'm not really telling people about this. I guess I'm too scared about the whole thing. I don't want people to know that it's happening. Maybe once it's over and I'm covered again. So those of you who know me in "Real Life," [all two of you, I think], would you mind not spreading this around?)
I'm sure that this is for the best somehow. That living in MA would have led to something worse happening. That I had to be lied to get up here. That where we live is where we belong. I have enough faith to believe that. It pays to be a crunchy pantheist. But I'm still mad.
Monday, November 8, 2010
Sudden Moving!
Sudden change in living arrangements! M got a job 1.5 hours north of here and we're heading up! She starts 2 weeks from today. Today she found an apartment up there and a week from tomorrow we move.
Until then--PACKING.
After then--UNPACKING.
Things will be a tad busy. I will be rather absent on here.
Hope you all are well!
Until then--PACKING.
After then--UNPACKING.
Things will be a tad busy. I will be rather absent on here.
Hope you all are well!
Saturday, October 16, 2010
A fear I had
I finally heard back about the lab work I had done last month. I had called the nurses' line a while back to get my results and the woman literally read me off the abbreviations and the resulting numbers from the tests but couldn't explain them to me besides to say that my liver function was low. So I had a mini spaz attack and called Dr. K.
Apparently having low liver function actually means that the number that would be high if my liver was failing, is low. Which usually means you are a smaller person. (P.S. I'm five foot zero.) That would have been nice to know.
But everything else is fine. No anemia, kidneys are holding, all that jazz. Woohoo!
Anyway, the low blood pressure thing has still been giving me trouble. Dr. K recommended I talked to my GP about that since it's likely EDS related and gave me the very popular phrase these days, "By now, you probably know more about this than me."
So I was at a friend's reading the other day and I had arrived a tidge late so there weren't any seats left. I was leaning against the door frame until my back hurt too bad, then I would squat until my legs hurt too much then stand up and lean until my back hurt. You know, rotating the pain. And the whole standing after squatting thing is not the best plan when your blood pressure is dropping, what with the room spinning and blurred vision.
I was feeling pretty faint, and I had this fear. Now fainting in public is something I'm scared of doing in the first place but see, I was standing/squatting next to this college kid sitting in a chair taking notes and I had this fear that I was going faint on him. Not only that but I was going to faint into this kid's lap, (maybe breaking him--he looked scrawny) and my ass would hit his pen and it would write something in his notebook. I would write in his notebook with my fainted ass.
Then this kid would be walking around with some little scribble thing that was written by a fainting girl's ass.
That was my very specific fear. And it kept me going. And I didn't faint. Which is what I was going for in the first place.
Off tomorrow for a few days with the wifey to celebrate our one year wedding anniversary. Which is even better than not writing in someone's notebook with an unconscious ass.
Apparently having low liver function actually means that the number that would be high if my liver was failing, is low. Which usually means you are a smaller person. (P.S. I'm five foot zero.) That would have been nice to know.
But everything else is fine. No anemia, kidneys are holding, all that jazz. Woohoo!
Anyway, the low blood pressure thing has still been giving me trouble. Dr. K recommended I talked to my GP about that since it's likely EDS related and gave me the very popular phrase these days, "By now, you probably know more about this than me."
So I was at a friend's reading the other day and I had arrived a tidge late so there weren't any seats left. I was leaning against the door frame until my back hurt too bad, then I would squat until my legs hurt too much then stand up and lean until my back hurt. You know, rotating the pain. And the whole standing after squatting thing is not the best plan when your blood pressure is dropping, what with the room spinning and blurred vision.
I was feeling pretty faint, and I had this fear. Now fainting in public is something I'm scared of doing in the first place but see, I was standing/squatting next to this college kid sitting in a chair taking notes and I had this fear that I was going faint on him. Not only that but I was going to faint into this kid's lap, (maybe breaking him--he looked scrawny) and my ass would hit his pen and it would write something in his notebook. I would write in his notebook with my fainted ass.
Then this kid would be walking around with some little scribble thing that was written by a fainting girl's ass.
That was my very specific fear. And it kept me going. And I didn't faint. Which is what I was going for in the first place.
Off tomorrow for a few days with the wifey to celebrate our one year wedding anniversary. Which is even better than not writing in someone's notebook with an unconscious ass.
Friday, October 1, 2010
Tips for raising blood pressure?
I know. It's a weird question.
I haven't been online in a little while. I've been feeling pretty awful. Ah, orthostatic hypotension, how do I loathe thee?
I'm almost constantly dizzy, headachey, nauseous, and crazy amounts of fatigued. When I sit up or stand up it all gets 1000 times worse--my vision goes all wonky and blurry and my headache throbs even worse for a few seconds. It's been really dumb.
My blood pressure has been bouncing around. Generally it's been 85/50 but sometimes down to 70/52 and sometimes up to my normal 100/60. When I checked right now it was 97/42 with hr at 73bpm.
Dysautonomia has never been mentioned in my case, but my doc is aware of my symptoms and the EDS.
I feel really tired. For a couple of days there I was getting pretty scared about how utterly crappy I felt but my pressure went up for a few days but now I feel pretty gross again.
Currently I'm trying to eat a bunch of salty foods and increase my water intake even more. I'm pounding Gatorade and V8 and eating canned soup and frozen foods. These are things I don't generally eat. I'm a water and salad girl. I'm that freak who likes to eat healthy foods (with a side of cake), so getting free reign to eat all the ramen I want isn't fun-time news.
Anyone else dealing with these kinds of issues? Got any tips on coping? Or ways to take in salt without eating a pound of pretzels? Because while that would be tasty, I've worked hard to lose about 20 pounds this year in a healthy way and I don't feel like gaining it all by because of doctor mandated ramen.
Also, I started on celebrex and now I have really bad insomnia. Like, why the hell and I laying down at all, this is stupid. Why do I even own a bed thoughts at 3:30 AM. Even while on my SLEEPING MEDS which normally knock me out like a brick wall hit me. I'm taking myself off it for a few days to see if I sleep better.
I haven't been online in a little while. I've been feeling pretty awful. Ah, orthostatic hypotension, how do I loathe thee?
I'm almost constantly dizzy, headachey, nauseous, and crazy amounts of fatigued. When I sit up or stand up it all gets 1000 times worse--my vision goes all wonky and blurry and my headache throbs even worse for a few seconds. It's been really dumb.
My blood pressure has been bouncing around. Generally it's been 85/50 but sometimes down to 70/52 and sometimes up to my normal 100/60. When I checked right now it was 97/42 with hr at 73bpm.
Dysautonomia has never been mentioned in my case, but my doc is aware of my symptoms and the EDS.
I feel really tired. For a couple of days there I was getting pretty scared about how utterly crappy I felt but my pressure went up for a few days but now I feel pretty gross again.
Currently I'm trying to eat a bunch of salty foods and increase my water intake even more. I'm pounding Gatorade and V8 and eating canned soup and frozen foods. These are things I don't generally eat. I'm a water and salad girl. I'm that freak who likes to eat healthy foods (with a side of cake), so getting free reign to eat all the ramen I want isn't fun-time news.
Anyone else dealing with these kinds of issues? Got any tips on coping? Or ways to take in salt without eating a pound of pretzels? Because while that would be tasty, I've worked hard to lose about 20 pounds this year in a healthy way and I don't feel like gaining it all by because of doctor mandated ramen.
Also, I started on celebrex and now I have really bad insomnia. Like, why the hell and I laying down at all, this is stupid. Why do I even own a bed thoughts at 3:30 AM. Even while on my SLEEPING MEDS which normally knock me out like a brick wall hit me. I'm taking myself off it for a few days to see if I sleep better.
Friday, September 24, 2010
Undifferentiated Me.
So I went to Tufts again not expecting much for once and walked away with a diagnosis. Dr. K is going with Undifferentiated Connective Tissue Disease.
Why do I always have to get the conditions with tongue twister names?
Basically, I have an autoimmune disease that doesn't fit the parameters of any established autoimmune disease. Right now, it is my very own customized disease. Way to go, Immune System. Way to be an individual.
Now, there is a chance that I have an early form of another disease and my condition will evolve into SLE or Scleroderma or whatever. In that case, I really had immature Lupus. Baby Lupus before it grow up into Big Bad Lupus. Kind of like in Pokemon. (If I'm understanding how that works.)
There is also a chance it will never evolve into anything else. That this is it. In that case, I have a weird autoimmune disease that only affects my hands. Dr. K says that the fact that my condition has remained "stable" (as in not spread to any other organ system) is a good sign that it may stay like this. If I can make it to two years, I'll be in even better shape.
We're repeating some blood and urine labs to see where I am and to check my kidneys because of my WTF bladder. Dr. K is putting me on Celebrex to see if that can help with the constant inflammation of my hands.
I also have to up my water and salt intake since my blood pressure at the doc's office was 85/52. Eek! I knew I had been dizzier recently but I just figured it was the medicine I'm on.
When I woke up this morning I was feeling extra dizzy and when I reached up above my head to get something off a shelf, I really thought I was going to pass out. The world spun like you wouldn't believe, my vision went all blurry, I was sure I was going to puke everywhere, and my head starting throbbing like mad. No more raising my arms up. Forget that.
Also, I have tennis elbow in my left arm. I'm right handed. And I don't play tennis. What the hell? I swear to any god you like, my body just gets bored finds some kind of trouble to get itself into to keep occupied.
But hey! Answers! Thanks, world. It's appreciated. :)
Why do I always have to get the conditions with tongue twister names?
Basically, I have an autoimmune disease that doesn't fit the parameters of any established autoimmune disease. Right now, it is my very own customized disease. Way to go, Immune System. Way to be an individual.
Now, there is a chance that I have an early form of another disease and my condition will evolve into SLE or Scleroderma or whatever. In that case, I really had immature Lupus. Baby Lupus before it grow up into Big Bad Lupus. Kind of like in Pokemon. (If I'm understanding how that works.)
There is also a chance it will never evolve into anything else. That this is it. In that case, I have a weird autoimmune disease that only affects my hands. Dr. K says that the fact that my condition has remained "stable" (as in not spread to any other organ system) is a good sign that it may stay like this. If I can make it to two years, I'll be in even better shape.
We're repeating some blood and urine labs to see where I am and to check my kidneys because of my WTF bladder. Dr. K is putting me on Celebrex to see if that can help with the constant inflammation of my hands.
I also have to up my water and salt intake since my blood pressure at the doc's office was 85/52. Eek! I knew I had been dizzier recently but I just figured it was the medicine I'm on.
When I woke up this morning I was feeling extra dizzy and when I reached up above my head to get something off a shelf, I really thought I was going to pass out. The world spun like you wouldn't believe, my vision went all blurry, I was sure I was going to puke everywhere, and my head starting throbbing like mad. No more raising my arms up. Forget that.
Also, I have tennis elbow in my left arm. I'm right handed. And I don't play tennis. What the hell? I swear to any god you like, my body just gets bored finds some kind of trouble to get itself into to keep occupied.
But hey! Answers! Thanks, world. It's appreciated. :)
Friday, September 17, 2010
2010 National Invisible Chronic Illness Awareness Week
I filled this out last year as part of Awareness Week running from Sept 14-18. Thought I might fill it out again this year to see what's changed.
Please keep in mind as you go about your days, many people who don't look sick are.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is:
Type III Ehlers Danlos Syndrome (Hypermobility Type) (often shortened to HEDS pronounced "heads". come on, that's funny.)
Lumbar Spinal Stenosis with congenital lumbar spinal fusion
A Mystery Autoimmune disease (Scleroderma? Lupus? I dunno and the docs dunno either.)
2. I was diagnosed with it in the year:
HEDS: 2009
Stenosis: 2008
Autoimmune: Uh... working on it.
3. But I had symptoms since:
HEDS: 10 years old
Stenosis: 2008
Autoimmune: 1 year ago
4. The biggest adjustment I’ve had to make is:
HEDS: Learning to walk without dislocating--Still haven't figured it out. And when that doesn't work, learning to deal with the condesending smiles I get from strangers when I'm in my wheelchair.
Stenosis: I can't lift anything over 20lbs. You know how little 20lbs is?
Autoimmune: Learning to write, type, bathe, eat, dress, hold a cane, and wheel my chair without the use of my fingers.
5. Most people assume: I'm a trainwreck and there's just always something wrong with Kris.
6. The hardest part about mornings is: waking up and taking stock of what joints have come out while I slept and putting them back in place while I'm still really groggy and sore but without bending any of my fingers.
7. My favorite medical TV show is: I'm not a big TV person even though I could use a House in my life right about now.
8. A gadget I couldn’t live without is: my cane.
9. The hardest part about nights is: finding any sort of comfortable position. The one or two positions that don't hurt my back are guaranteed to dislocate my shoulders. I never sleep more than an hour or two straight (unless I take something to knock me out) because I've got to be resetting my arms.
10. Each day I take __ pills & vitamins. (No comments, please): As little as 9 and as many as 12.
11. Regarding alternative treatments I: find that meditation is still the best way to control my pain when my meds can't touch it (and at other times in general).
12. If I had to choose between an invisible illness or visible I would choose: It's all pro's and con's and I can't get behind choosing any illness.
13. Regarding working and career: I want to work so bad. It kills me that I can't. I just keep hoping that one day we'll figure out some treatment plan that works.
14. People would be surprised to know: that I'm okay talking about what's going on with me. I used to not be. I used to be sort of embarrassed about it. But now, this is my world. Knowing me is about knowing this--just a little bit.
15. The hardest thing to accept about my new reality has been: when I wake up, I never know just how bad or how good I am going to feel that day. All plans are up in the air, always.
16. Something I never thought I could do with my illness that I did was: graduate college, garden again, and crochet/knit again.
17. The commercials about my illness: PFFT. There are no comercials. Most DOCTORS don't know what HEDS is.
18. Something I really miss doing since I was diagnosed is: picking people up when I hug them. That is really hard not to do and I miss it a ton. (This one is still REALLY true.)
19. It was really hard to have to give up: applying to jobs, hiking, running was cool, going for long walks, not having to remember what pills I have to take when.
20. A new hobby I have taken up since my diagnosis is: bonsai. They sit there; sometimes I water them. Sometimes I prune them. Oddly satisfying. Plus I blog now.
21. If I could have one day of feeling normal again I would: I'd spend the morning at the beach then take an afternoon hike in the woods.
22. My illness has taught me: that there is nothing in this world that has an ass I can't kick.
23. Want to know a secret? One thing people say that gets under my skin is: when they say nothing. When I walk/hobble/wheel into a room and I'm worse than normal/before and people ignore it, that's hard. I feel like a dick bringing it up at those times because they mean well, but you know what? That is what is new with me. It sucks but this is what I do. When people ask, it shows that you care. I won't think that you pity me because if I thought you would, we wouldn't be friends. OR when people do ask and when I answer they say, "Really?" or roll their eyes like this is an inconvenience to them.
24. But I love it when people: Laugh when I make jokes about my condition, give me good, long hugs, and ask me for updates.
25. My favorite motto, scripture, quote that gets me through tough times is: "Beyond logic, beyond reason, beyond hope."
26. When someone is diagnosed I’d like to tell them: Educate yourself. If you've been graced with an "orphan disease," sometimes in a medical situation you will be the only one in the room who knows anything beyond a quick definition about your condition. You need to know the ins and outs of it. Be your own advocate and if you can't, find someone you trust who will.
27. Something that has surprised me about living with an illness is: that all people have the same reaction to seeing me with my cane. Double take at me, look at the cane, look down at my feet, then up at my face- usually with a disapproving look. Yup, I get it. My leg isn't in a cast so you think I use this thing to look cool. Thanks. It's just amazing the amount of people who follow this exact same order of motions. Also how many people will walk into, jostle, kick, or block in a person in a wheelchair. Dude. WTH?
28. The nicest thing someone did for me when I wasn’t feeling well was: give me a long hug and remind me that I am loved and not alone.
29. I’m involved with Invisible Illness Week because: it affects me, my family, and many of my friends and so few people unaffected understand.
30. The fact that you read this list makes me feel: thankful that you care enough to have gotten this far. If you have, please comment. No one commmented on the last one, so I'm not even sure if anyone bothered to read it. I know sometimes in the face of shit like this that people don't know what to say, but fuck that and just say anything. Say, "Hi." That'd work to. Just let me know that this personal shit that I'm putting out there for the sake of "awareness" is not just going out in a vacuum.
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
Please keep in mind as you go about your days, many people who don't look sick are.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is:
Type III Ehlers Danlos Syndrome (Hypermobility Type) (often shortened to HEDS pronounced "heads". come on, that's funny.)
Lumbar Spinal Stenosis with congenital lumbar spinal fusion
A Mystery Autoimmune disease (Scleroderma? Lupus? I dunno and the docs dunno either.)
2. I was diagnosed with it in the year:
HEDS: 2009
Stenosis: 2008
Autoimmune: Uh... working on it.
3. But I had symptoms since:
HEDS: 10 years old
Stenosis: 2008
Autoimmune: 1 year ago
4. The biggest adjustment I’ve had to make is:
HEDS: Learning to walk without dislocating--Still haven't figured it out. And when that doesn't work, learning to deal with the condesending smiles I get from strangers when I'm in my wheelchair.
Stenosis: I can't lift anything over 20lbs. You know how little 20lbs is?
Autoimmune: Learning to write, type, bathe, eat, dress, hold a cane, and wheel my chair without the use of my fingers.
5. Most people assume: I'm a trainwreck and there's just always something wrong with Kris.
6. The hardest part about mornings is: waking up and taking stock of what joints have come out while I slept and putting them back in place while I'm still really groggy and sore but without bending any of my fingers.
7. My favorite medical TV show is: I'm not a big TV person even though I could use a House in my life right about now.
8. A gadget I couldn’t live without is: my cane.
9. The hardest part about nights is: finding any sort of comfortable position. The one or two positions that don't hurt my back are guaranteed to dislocate my shoulders. I never sleep more than an hour or two straight (unless I take something to knock me out) because I've got to be resetting my arms.
10. Each day I take __ pills & vitamins. (No comments, please): As little as 9 and as many as 12.
11. Regarding alternative treatments I: find that meditation is still the best way to control my pain when my meds can't touch it (and at other times in general).
12. If I had to choose between an invisible illness or visible I would choose: It's all pro's and con's and I can't get behind choosing any illness.
13. Regarding working and career: I want to work so bad. It kills me that I can't. I just keep hoping that one day we'll figure out some treatment plan that works.
14. People would be surprised to know: that I'm okay talking about what's going on with me. I used to not be. I used to be sort of embarrassed about it. But now, this is my world. Knowing me is about knowing this--just a little bit.
15. The hardest thing to accept about my new reality has been: when I wake up, I never know just how bad or how good I am going to feel that day. All plans are up in the air, always.
16. Something I never thought I could do with my illness that I did was: graduate college, garden again, and crochet/knit again.
17. The commercials about my illness: PFFT. There are no comercials. Most DOCTORS don't know what HEDS is.
18. Something I really miss doing since I was diagnosed is: picking people up when I hug them. That is really hard not to do and I miss it a ton. (This one is still REALLY true.)
19. It was really hard to have to give up: applying to jobs, hiking, running was cool, going for long walks, not having to remember what pills I have to take when.
20. A new hobby I have taken up since my diagnosis is: bonsai. They sit there; sometimes I water them. Sometimes I prune them. Oddly satisfying. Plus I blog now.
21. If I could have one day of feeling normal again I would: I'd spend the morning at the beach then take an afternoon hike in the woods.
22. My illness has taught me: that there is nothing in this world that has an ass I can't kick.
23. Want to know a secret? One thing people say that gets under my skin is: when they say nothing. When I walk/hobble/wheel into a room and I'm worse than normal/before and people ignore it, that's hard. I feel like a dick bringing it up at those times because they mean well, but you know what? That is what is new with me. It sucks but this is what I do. When people ask, it shows that you care. I won't think that you pity me because if I thought you would, we wouldn't be friends. OR when people do ask and when I answer they say, "Really?" or roll their eyes like this is an inconvenience to them.
24. But I love it when people: Laugh when I make jokes about my condition, give me good, long hugs, and ask me for updates.
25. My favorite motto, scripture, quote that gets me through tough times is: "Beyond logic, beyond reason, beyond hope."
26. When someone is diagnosed I’d like to tell them: Educate yourself. If you've been graced with an "orphan disease," sometimes in a medical situation you will be the only one in the room who knows anything beyond a quick definition about your condition. You need to know the ins and outs of it. Be your own advocate and if you can't, find someone you trust who will.
27. Something that has surprised me about living with an illness is: that all people have the same reaction to seeing me with my cane. Double take at me, look at the cane, look down at my feet, then up at my face- usually with a disapproving look. Yup, I get it. My leg isn't in a cast so you think I use this thing to look cool. Thanks. It's just amazing the amount of people who follow this exact same order of motions. Also how many people will walk into, jostle, kick, or block in a person in a wheelchair. Dude. WTH?
28. The nicest thing someone did for me when I wasn’t feeling well was: give me a long hug and remind me that I am loved and not alone.
29. I’m involved with Invisible Illness Week because: it affects me, my family, and many of my friends and so few people unaffected understand.
30. The fact that you read this list makes me feel: thankful that you care enough to have gotten this far. If you have, please comment. No one commmented on the last one, so I'm not even sure if anyone bothered to read it. I know sometimes in the face of shit like this that people don't know what to say, but fuck that and just say anything. Say, "Hi." That'd work to. Just let me know that this personal shit that I'm putting out there for the sake of "awareness" is not just going out in a vacuum.
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
Saturday, September 11, 2010
Slowing down
I've noticed recently that it feels like my body is running out of steam. Everything is taking me longer. Everything I do is harder.
(Sorry for the slight rant)
I drop half of what I pick up. I can't sit down as long as before. When I'm sitting down or lying in bed, I have to use my arms to shift myself. It's not like I feel exhausted after performing a simple task like folding laundry--it's that somehow folding laundry has turned into running a military obstacle course while taking a calculus test. It makes me feel like an ass.
People ask me what I did with my day. It's a common question. What did you do today? I dread it. I feel like I'm being scrutinized every time. I tell them: I checked my email, changed the guinea pig cage, called a couple of doctors' offices to straighten out appointments/prescriptions, did dishes, and made dinner.
And the response I get most of the time is along the lines of, "Is that all?"
And here I am feeling like I have just survived being drawn and quartered. Everything hurts. And when you have chronic pain, sometimes I'm not sure people understand what it means when you say, I hurt. You hurt all the time. This isn't news, right? No, this is very different.
Say everyone has a baseline of pain. Healthy people? Baseline of no pain. People with chronic pain? Baseline of X amount of pain. All day, all the time. Docs have told me that there isn't much to do about this--that chronic pain is chronic. Get used it, pretty much. And I do, enough to continue to have a positive look on life and manage as well as I do. But I never get used to it enough that I can forget about it or that it goes away. Or that other or new pain doesn't hurt. So when I say, I hurt, I mean that the shit that is going on is way above my baseline level and is seriously fucking me up. But of course, even though I feel this way, I still get the, "Well, what else did you?"
No. You aren't listening. I checked my email--given this is the easiest thing I did. I changed the guinea pig's cage. This took over an hour not including breaks. Sure it didn't used to take that long, but that's when I had hands that worked and didn't drop 75% of the old bedding, piggie poop, and new bedding on the floor. I talked to doctors' offices. Have you ever dealt with big medical offices? On hold, transferred, cut off, on hold, on hold, transferred. No idea how long that took. I did dishes--again, breaks in between each dish to lay down on the couch. I made dinner which took over four hours. It wasn't even like a fancy souffle or something. I just work slower now. I have to do a little, go lay down, and then come back to it. By the end of that, all I could do was eat a little and go lie down for good.
And when I say I took a break to lie down, please don't think it's like a refreshing 30 minute nap or that I plop down on the couch and go, ahhhh. This is a lot more like fetal position, slow measured breathing, and a pull it together mantra.
I feel like I'm working my ass off. It doesn't put me in the mood to get disappointed looks. (Mind you, the people I interact with on a daily basis and really know me do not have this reaction. They generally tell me I did too much.)
In short, I am frustrated. Yes, I realize that most people can do in under two hours what I can do in a day. Yes, I understand that most people can do these things while working full-time. Yes, I feel pathetic most times all on my own without needing you to point it out for me. No, I am not being lazy. I have three chronic, incurable conditions; remember those? Yes, I'd love to be able to do more with my day. D'uh.
Do I want someone else to do these things for me so I can just rest my joints? Hell no! I plan to work my flat ass as hard as I can work it until it drops. I don't mean push it until I pass out. I mean work at a reasonable pace so that by the end of the day I feel that A. I got something accomplished, and B. I feel tired and a little sore, like I worked. Because ultimately that's what I want to do. So, why you gotta give me attitude about it, world?
(Sorry for the slight rant)
I drop half of what I pick up. I can't sit down as long as before. When I'm sitting down or lying in bed, I have to use my arms to shift myself. It's not like I feel exhausted after performing a simple task like folding laundry--it's that somehow folding laundry has turned into running a military obstacle course while taking a calculus test. It makes me feel like an ass.
People ask me what I did with my day. It's a common question. What did you do today? I dread it. I feel like I'm being scrutinized every time. I tell them: I checked my email, changed the guinea pig cage, called a couple of doctors' offices to straighten out appointments/prescriptions, did dishes, and made dinner.
And the response I get most of the time is along the lines of, "Is that all?"
And here I am feeling like I have just survived being drawn and quartered. Everything hurts. And when you have chronic pain, sometimes I'm not sure people understand what it means when you say, I hurt. You hurt all the time. This isn't news, right? No, this is very different.
Say everyone has a baseline of pain. Healthy people? Baseline of no pain. People with chronic pain? Baseline of X amount of pain. All day, all the time. Docs have told me that there isn't much to do about this--that chronic pain is chronic. Get used it, pretty much. And I do, enough to continue to have a positive look on life and manage as well as I do. But I never get used to it enough that I can forget about it or that it goes away. Or that other or new pain doesn't hurt. So when I say, I hurt, I mean that the shit that is going on is way above my baseline level and is seriously fucking me up. But of course, even though I feel this way, I still get the, "Well, what else did you?"
No. You aren't listening. I checked my email--given this is the easiest thing I did. I changed the guinea pig's cage. This took over an hour not including breaks. Sure it didn't used to take that long, but that's when I had hands that worked and didn't drop 75% of the old bedding, piggie poop, and new bedding on the floor. I talked to doctors' offices. Have you ever dealt with big medical offices? On hold, transferred, cut off, on hold, on hold, transferred. No idea how long that took. I did dishes--again, breaks in between each dish to lay down on the couch. I made dinner which took over four hours. It wasn't even like a fancy souffle or something. I just work slower now. I have to do a little, go lay down, and then come back to it. By the end of that, all I could do was eat a little and go lie down for good.
And when I say I took a break to lie down, please don't think it's like a refreshing 30 minute nap or that I plop down on the couch and go, ahhhh. This is a lot more like fetal position, slow measured breathing, and a pull it together mantra.
I feel like I'm working my ass off. It doesn't put me in the mood to get disappointed looks. (Mind you, the people I interact with on a daily basis and really know me do not have this reaction. They generally tell me I did too much.)
In short, I am frustrated. Yes, I realize that most people can do in under two hours what I can do in a day. Yes, I understand that most people can do these things while working full-time. Yes, I feel pathetic most times all on my own without needing you to point it out for me. No, I am not being lazy. I have three chronic, incurable conditions; remember those? Yes, I'd love to be able to do more with my day. D'uh.
Do I want someone else to do these things for me so I can just rest my joints? Hell no! I plan to work my flat ass as hard as I can work it until it drops. I don't mean push it until I pass out. I mean work at a reasonable pace so that by the end of the day I feel that A. I got something accomplished, and B. I feel tired and a little sore, like I worked. Because ultimately that's what I want to do. So, why you gotta give me attitude about it, world?
Wednesday, September 8, 2010
Speed Update.
Sort of like speed dating. Here we go!
- Went through all my antibiotics and still felt crappy. Probably because I was overdoing it the whole time. So I dedicated 2 days to doing jack-shit, drinking tons of water, and relaxing. Fever broke, stomach pain stopped, infection gone. Yippee!
- I still can't pee like a normal person though. It still takes a while to convince my bladder to part with its contents. Neuro doc says it could be a result of my back problems getting worse. Great.
- Speaking of which! Saw the Neuro Bowtie Doc for results. The EMG came back normal as he expected. He's confident that I have an autoimmune disease and is throwing the ball back in the Rheumy's court.
- Talked to Dr. K who agreed I should cancel my appointment with the second Neuro instead of redoing all the tests and such.
- Started Plaquenil so I had to have an eye exam with pupil dilation. I goddamn hated it. I have good vision and didn't handle it well when everything was suddenly blurry. That adventure here. (My entry is fine, but most of the blog is not work friendly. And probably offensive. But funny.)
- Hands have been having good and bad days. When they are good, it's pretty damn cool. When they are bad, they are bad.
- Left elbow doesn't want to straighten. Weird.
- Seeing Dr. K on the 20th. Hoping to figure out which autoimmune disease I have within the next decade. That'd be cool. (And faster than it took the docs to figure out that I have EDS.)
Saturday, August 21, 2010
Our loving conversations
The other night while trying to fall asleep.
Me: You know that my pill load is up to 11 on a normal day?
Wife: Wow.
Me: Yup.
Wife: You're the sick member of the herd just asking to be picked off.
Me: Yes, indeed I am.
Wife: (using her best creeper voice) You want me to pick you off? Get it? Huh? Get it? Pick you off?
Me: (long silence) ...Please don't pick my nose.
Wife: A-ha! (Attempts to pick my nose.)
Me: (Deflects.)
Commence laughing and cuddling. You know what--I live a pretty awesome life.
Me: You know that my pill load is up to 11 on a normal day?
Wife: Wow.
Me: Yup.
Wife: You're the sick member of the herd just asking to be picked off.
Me: Yes, indeed I am.
Wife: (using her best creeper voice) You want me to pick you off? Get it? Huh? Get it? Pick you off?
Me: (long silence) ...Please don't pick my nose.
Wife: A-ha! (Attempts to pick my nose.)
Me: (Deflects.)
Commence laughing and cuddling. You know what--I live a pretty awesome life.
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