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.
Monday, December 20, 2010
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. :)
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