It appears that the major flare up that I've had for the last few weeks is going away. Thanks to everyone for their thoughts and prayers throughout the whole ordeal. I never thought that I would be so debilitated again, like I was post spinal surgery, but alas, Stills comes into my life and I can't do a damn thing physically. Its like I'm a two year old. I can tell people what I want but the only thing I can do for myself is go to the bathroom eat and sleep. Oh yeah, and there is always a nap time worked into a day.
I have found a lot of satisfaction in finding the website www.butyoudontlooksick.com where everyone understands what it's like to have a chronic invisible yet debilitating illness. It's a great online support group and although it's not specific to Stills disease, the people there do understand. We call each other "spoonies" and there are great articles, some that make you laugh, some that make you cry. They make it feel ok to just say, "I can't do xyz today, sorry!" without feeling guilty. What a wonderful thing.
Monday, November 29, 2010
Thursday, November 25, 2010
Thankful for?
It's hard to stay positive when you have such a debilitating disease. We as "spoonies" (see post on the spoon theory for the reference)actually have to learn to think about everything in a different way than a "normal" person in order to stay sane.
And sane is a very relative thing. To me sanity is thinking clearly enough to be able to focus on something, anything, other than my disease. I am slowly learning to divert my attention to other things when it gets to be too much to handle. When I want to cry, I hug my dog, or I strike up a conversation with anyone who will talk about anything that doesn't involve my disease. It's a challenge, but I'm learning.
I have to focus my energy on the positives in life, and when you have a chronic illness, it's one of the hardest things to do. But it is possible. So, I can't lift a gallon of apple cider, but I do have a great husband that is willing to fill up my glass. I can enjoy the smell and taste of it, even though it hurts to twist my wrist to take a drink.
The biggest thing for me is that I am truly thankful to have a family, both immediate and extended, that are trying their hardest to understand what it's like to have Stills Disease. I know my Dad often researches new treatments for autoimmune diseases, and reads every word of every article I email him. My mom (god bless her) actually will sit with me and let me complain for hours on end about my aches and pains, and drives me to every appointment I have. My husband, although he has never broken a bone or never been sick, tries so hard to process and understand what it's like to be in bed or on the couch all day long, as well as rubbing my back when I have a good cry. My little corgi Bomber, knows when and where I hurt and licks my wrists and ankles when they flare. My extended family reads this blog and does a little research on their own to learn about the disease. And they pray.
I don't think they can even imagine how much that means to me. I don't want sympathy, I don't want tears. I want support and love, and that is exactly what they are giving me. (including when i disappear from the table for a nap, and no questions are asked, except maybe "would you like a blanket"). They know not to say "but you look good" or "you feeling any better?" which hurts more than it helps. (if it does come out I just reply "don't go there" and I think they are getting it).
Anyway, as we celebrate this Thanksgiving, I don't want to dwell on the negative. The aches, pains and fevers aren't going away anytime soon, so forget them. I have an incredible family that "gets it" as much as one can without actually suffering from a chronic illness. And if they don't understand, they are trying their hardest. I can't ask for more. I am lucky.
And sane is a very relative thing. To me sanity is thinking clearly enough to be able to focus on something, anything, other than my disease. I am slowly learning to divert my attention to other things when it gets to be too much to handle. When I want to cry, I hug my dog, or I strike up a conversation with anyone who will talk about anything that doesn't involve my disease. It's a challenge, but I'm learning.
I have to focus my energy on the positives in life, and when you have a chronic illness, it's one of the hardest things to do. But it is possible. So, I can't lift a gallon of apple cider, but I do have a great husband that is willing to fill up my glass. I can enjoy the smell and taste of it, even though it hurts to twist my wrist to take a drink.
The biggest thing for me is that I am truly thankful to have a family, both immediate and extended, that are trying their hardest to understand what it's like to have Stills Disease. I know my Dad often researches new treatments for autoimmune diseases, and reads every word of every article I email him. My mom (god bless her) actually will sit with me and let me complain for hours on end about my aches and pains, and drives me to every appointment I have. My husband, although he has never broken a bone or never been sick, tries so hard to process and understand what it's like to be in bed or on the couch all day long, as well as rubbing my back when I have a good cry. My little corgi Bomber, knows when and where I hurt and licks my wrists and ankles when they flare. My extended family reads this blog and does a little research on their own to learn about the disease. And they pray.
I don't think they can even imagine how much that means to me. I don't want sympathy, I don't want tears. I want support and love, and that is exactly what they are giving me. (including when i disappear from the table for a nap, and no questions are asked, except maybe "would you like a blanket"). They know not to say "but you look good" or "you feeling any better?" which hurts more than it helps. (if it does come out I just reply "don't go there" and I think they are getting it).
Anyway, as we celebrate this Thanksgiving, I don't want to dwell on the negative. The aches, pains and fevers aren't going away anytime soon, so forget them. I have an incredible family that "gets it" as much as one can without actually suffering from a chronic illness. And if they don't understand, they are trying their hardest. I can't ask for more. I am lucky.
Tuesday, November 23, 2010
Endorphins, and crying to make them work
I just had a good cry. Its solely from the pain I'm in. I am at my max for medicine for the night. So crying seemed my only legal option.
Matt rubbed my back while the tears flowed. Then we diverted our energy to bringing the dog outside and playing fetch, well they did and I just watched.
We came back inside and although the pain is still raging through my body, it doesn't all seem so bad. Guess I got those endorphins going. Heard they help with pain. Someone was right.
So if you are hurting, just let it out. You will feel much better afterwards.
-MS
Matt rubbed my back while the tears flowed. Then we diverted our energy to bringing the dog outside and playing fetch, well they did and I just watched.
We came back inside and although the pain is still raging through my body, it doesn't all seem so bad. Guess I got those endorphins going. Heard they help with pain. Someone was right.
So if you are hurting, just let it out. You will feel much better afterwards.
-MS
I'm still here...meh.
So, after all of the late September hype, it's definitely NOT lymphoma, and appears to be Still's Disease after all. But from what I have discovered from talking to a number of people out there with AOSD, this misdiagnosis is soooo common, more common than finding another person with Still's actually! So the cancer is ruled out.
In some sick sort of way, I was hoping in a way it was lymphoma, so I could go head first into treatment then be ok, in remission. But its more likely I'm stuck with this disease that has me pretty much tied to the house 24/7, when I have a flare, which for the last month has been pretty much daily. Oh and god forbid i do decide to do something, I pay for it the next few days.
Like I just ended out canceling my long awaited hair appointment in NYC that was supposed to be tomorrow, because I know if I went, I wouldn't make it up to mid Hudson ny for thanksgiving. Unfortunately I still don't know if I'll make it. I going to try my hardest though. I know hubby is getting sick of going to family functions alone. I have a feeling it will be like that until I get an official diagnosis, although my new rheumy (yeah, didn't work out with Cohen) is very versed in AOSD and is pretty sure it's that. My entire blood panels have to come back from the infectious disease specialist (dec 5) and then I see the rheumy the following week.
If you do ever decide to switch doctors, make sure to get copies of your records to bring with you. It may be saving me another few months on getting an actual diagnosis. Yes, this rheumy thinks my old one was a quack too, so is starting over, but at least she doesn't have to retest me for everything. I need to save the little anemic blood that I do have left, right?
Oh, and as a side note, I have been on govt. Disability for two years now. How the heck do some of you work full time jobs while you feel like this? You are more stubborn than I am, which is saying a lot. Then again, through my multiple disabilities starting at 23 years old, I have slowly begun to stop being stubborn and start listening to my body and just speaking up. Just food for thought.
-MS
In some sick sort of way, I was hoping in a way it was lymphoma, so I could go head first into treatment then be ok, in remission. But its more likely I'm stuck with this disease that has me pretty much tied to the house 24/7, when I have a flare, which for the last month has been pretty much daily. Oh and god forbid i do decide to do something, I pay for it the next few days.
Like I just ended out canceling my long awaited hair appointment in NYC that was supposed to be tomorrow, because I know if I went, I wouldn't make it up to mid Hudson ny for thanksgiving. Unfortunately I still don't know if I'll make it. I going to try my hardest though. I know hubby is getting sick of going to family functions alone. I have a feeling it will be like that until I get an official diagnosis, although my new rheumy (yeah, didn't work out with Cohen) is very versed in AOSD and is pretty sure it's that. My entire blood panels have to come back from the infectious disease specialist (dec 5) and then I see the rheumy the following week.
If you do ever decide to switch doctors, make sure to get copies of your records to bring with you. It may be saving me another few months on getting an actual diagnosis. Yes, this rheumy thinks my old one was a quack too, so is starting over, but at least she doesn't have to retest me for everything. I need to save the little anemic blood that I do have left, right?
Oh, and as a side note, I have been on govt. Disability for two years now. How the heck do some of you work full time jobs while you feel like this? You are more stubborn than I am, which is saying a lot. Then again, through my multiple disabilities starting at 23 years old, I have slowly begun to stop being stubborn and start listening to my body and just speaking up. Just food for thought.
-MS
Monday, November 22, 2010
The Spoon Theory
Ok, so it's not really a theory, but it's by far the best explanation I have ever heard of what it's like to live with a chronic debilitating illness. Since is a copyrighted piece, I can't copy and paste it, but it's a must read. For whatever reason, my lovely iPad isn't allowing me to hyperlink, so please just copy and paste into your browser. It is very worth a read.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-
-MS
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-
-MS
Tuesday, October 12, 2010
My husband rocks!
My hubby works for an insurance company here on Long Island. Now, I'm not too sure how he did it, but within 24 hours of getting a letter from my oncologist, he talked to the right people and pushed through the approval for the CT scans.
Thank the flying spaghetti monster!
I'm scheduled for later this week. Woot!
Thank the flying spaghetti monster!
I'm scheduled for later this week. Woot!
Sunday, October 10, 2010
Irony, idiots and agitation.
I'd love to go off about the day and complain how bad it was to be on the phone with my insurance company all morning begging and pleading with them to actually approve the full body ct scan that my oncologist wanted done. But good old insurance company GHI decided that it wasn't quite "medically necessary" enough, and that they will proceed with the ct scan of the soft tissue of my neck only, followed by an xray or my chest. My oncologist even went as far as to get on the phone with the head of the medical directing staff at GHI and tell the her reasoning that it be done, onan asap basis, but to no avail, they will not do it. I was told that if the insurance company finds anything remotely suspicious from the chest xray, (which when looking for very little cancer cells, I highly doubt they will find), they may then go ahead and approve the remainder form the ct scans, maybe one at a time. But it's a big maybe at this point.
I have a hard time believing that this procedure, a full body ct scan, for someone that is even kind of suspect of having lymphoma, would not be a medical necessity. But then again, in the scope of the entire matter, GHI not fronting any unnecessary money towards my medical care and diagnosis is by far more important than treating whatever debilitating disease that i have at this point. But an illegal immigrant can walk into an ER at any hospital they choose and pop out twenty babies because they don't feel like wearing a condom, and we taxpayers have to foot the bill for this. I have private insurance and they won't even approve a simple procedure like a ct scan to figure out which lymph nodes are the best to harvest for the biopsy to see if I have friggin cancer. But that is an argument for another day. Maybe another lifetime.
So tomorrow I am going to have the neck ct scan as well as the chest xray and the medical examiner will read the reports and films and let me know if its ok to proceed with the rest of the trusting that my oncologist desperately wants done. I have a sneaking suspicion that there will be a law suit in sit really soon. It's not exactly like I want cosmetic botox after all. It really kind of is a life and death issue, one in which every day that passes could be critical.
Ironicly yesterday I posted about my amazing group of doctors, which I still have strong feelings for. I like most of them but I am pretty certain after the oh-my-god-you-are-kidding appointment I just had with rheumy Cohen, I will not be staying with his practice any longer. Bedside manner...NONE. He told my mother, who drives me to all of my appointments because my joints hurt too much to drive, not to allow me to read anything about Stills Disease, lymphoma, or anything else medical. He wanted to make sure I didn't educate myself about what is going on in my own body! Not to mention I'm a 28 year old married woman, my mom can't keep me off the Internet, nor would she want to! F that.
On the way out of the office, I quickly asked for copies of all of my records, evaluations, and blood workups so that I could hand them to all of my doctors. I figure the more people looking into those mystery diagnosis, the better, and I want them all to have the same information. As I looked through the records on my way home, I noticed in the "diagnosis" section, he had typed in Definite Stills Disease! Just to make it completely clear to everyone, Stills or AOSD is a clinical diagnosis, meaning, there are no specific tests that say you have stills or not, like what you would find with HIV where if the blood test is positive, you have it. With AOSD "all other diseases must first be ruled out before a definite diagnosis can be made" - Cush, MD. Dr. Cush, who is based out of Texas is the USs leading rheumy on AOSD. He's the go to guy. So my point is, I'm not going back to this anti-Internet anti-self awareness doctor again. I'm going to get a referral from http://www.stillsdisease.org/ And my pain management doctor. Anyone can be better than this idiot.
I have a hard time believing that this procedure, a full body ct scan, for someone that is even kind of suspect of having lymphoma, would not be a medical necessity. But then again, in the scope of the entire matter, GHI not fronting any unnecessary money towards my medical care and diagnosis is by far more important than treating whatever debilitating disease that i have at this point. But an illegal immigrant can walk into an ER at any hospital they choose and pop out twenty babies because they don't feel like wearing a condom, and we taxpayers have to foot the bill for this. I have private insurance and they won't even approve a simple procedure like a ct scan to figure out which lymph nodes are the best to harvest for the biopsy to see if I have friggin cancer. But that is an argument for another day. Maybe another lifetime.
So tomorrow I am going to have the neck ct scan as well as the chest xray and the medical examiner will read the reports and films and let me know if its ok to proceed with the rest of the trusting that my oncologist desperately wants done. I have a sneaking suspicion that there will be a law suit in sit really soon. It's not exactly like I want cosmetic botox after all. It really kind of is a life and death issue, one in which every day that passes could be critical.
Ironicly yesterday I posted about my amazing group of doctors, which I still have strong feelings for. I like most of them but I am pretty certain after the oh-my-god-you-are-kidding appointment I just had with rheumy Cohen, I will not be staying with his practice any longer. Bedside manner...NONE. He told my mother, who drives me to all of my appointments because my joints hurt too much to drive, not to allow me to read anything about Stills Disease, lymphoma, or anything else medical. He wanted to make sure I didn't educate myself about what is going on in my own body! Not to mention I'm a 28 year old married woman, my mom can't keep me off the Internet, nor would she want to! F that.
On the way out of the office, I quickly asked for copies of all of my records, evaluations, and blood workups so that I could hand them to all of my doctors. I figure the more people looking into those mystery diagnosis, the better, and I want them all to have the same information. As I looked through the records on my way home, I noticed in the "diagnosis" section, he had typed in Definite Stills Disease! Just to make it completely clear to everyone, Stills or AOSD is a clinical diagnosis, meaning, there are no specific tests that say you have stills or not, like what you would find with HIV where if the blood test is positive, you have it. With AOSD "all other diseases must first be ruled out before a definite diagnosis can be made" - Cush, MD. Dr. Cush, who is based out of Texas is the USs leading rheumy on AOSD. He's the go to guy. So my point is, I'm not going back to this anti-Internet anti-self awareness doctor again. I'm going to get a referral from http://www.stillsdisease.org/ And my pain management doctor. Anyone can be better than this idiot.
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