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
Showing posts with label lymphoma. Show all posts
Showing posts with label lymphoma. Show all posts
Tuesday, November 23, 2010
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.
Sunday, September 26, 2010
Part One. Commencement of the Finale
Although I suppose that's a little morbid, but it's true. In any situation, not only the bad ones.
It's always the beginning of the end.
Today just happens to be the day in which I accept the fact that I am facing the toughest battle of my whole life. I actually took a deep breath in and allowed myself to be vulnerable.
I looked into my mother's teary eyes and said "I know what it is, and it's cancer."
"I know," she cried.
Up until about 10 days ago I was pretty convinced whatever was wrong with me was a manifestation of a juvenile disease, come alive again in my adult life. The Rheumatoligist called it AOSD, or Still's Disease, a systemic rheumatic condition that is debilitating and incurable. It can be controlled with immunosupressant drugs and whatnot, but there is no cure. It would be something that would have to be dealt with for the rest of my life. Severe joint pain, fevers, rashes, and other seemingly annoying conditions such as pericarditis and liver damage, and a lot of weight lost, which I wasn't exactly upset about. And I had it all, down to the diagnosis of pericarditis last Sunday with my trip to the ER, instead of what was supposed to be a ride home from one of my best childhood friends weddings. When I missed that wedding, one that I had been anticipating for so so long, I knew I was really sick. I had always said that "I wouldn't miss Angela's wedding if my life depended on it." Funny things happen when your life is really at stake however. Things like weddings seem to take a back seat to a pericardial sack not rupturing on the dance floor.
Last week, after complaining to the doctor about my abdomen feeling as if it's going to fall out, he laid me on the exam table and touched my spleen. "well, it's gotten larger I believe." it had showed some enlargement on my sonogram 2 weeks prior, but that was before I could even feel it, now I actually wanted to rip it out. Then he left the room to go get my new blood workup, only to reemerge a few minutes later, white faced, as if he'd just seen a ghost. "I think at this point it would be best if we send you to a oncologist, just to rule out lymphoma. It's unlikely but i'd like to get you in there sooner than later."
Fair enough. So I called the referred doctor and after reading the booking nurse my supposed diagnosis and specifically asking her to see dr.x, she said in a sweet, yet sound enough voice to tell me "well that specific doctor is booked for a little while longer than we'd like to wait to see you. How is Monday for you at 3pm with Dr.Y?"
"Monday is great, I'll see you at 3pm." It was currently noon on Friday.
Still's, from what I can gather, doesn't progress this quickly. Whatever this beast inside of me is has dove deep in me, taken hold of my guts, and as Ozzy put it "is going off the rails in a crazy train." it's the best way to describe it. Completely out of control. Two weeks ago I had joint pain, now I'm headed to the oncologist tomorrow, fearful that my spleen is about to rupture. And the weirdest part is that all of this started because of a slight increase in my CRP level in my blood work, at my checkup.
Whether it is Still's or my gut feeling is actually correct, I've got a hell of a trip in front of me. As I said to my greatest friend in the world, Rachel, the other day, "at this point it's either a very rare, painful, incurable disease that I'll have to deal with for the rest of my life, or it's just your plain old, run of the mill cancer. Either way, it's going to suck pretty badly."
I don't plan to post every day, or some days I may have so much to say that I post three times. Guess you'll just have to wait and see. I don't know where this is going, and I would very much like to keep it that way, because I don't know where life is going. But then again, does anyone really?
What I do know is that if there really some kind of point, some purpose to life, mine specifically, I'm pretty hard pressed to figure out exactly what that is in a very short amount of time. Maybe you can help a gal out?
-MS
It's always the beginning of the end.
Today just happens to be the day in which I accept the fact that I am facing the toughest battle of my whole life. I actually took a deep breath in and allowed myself to be vulnerable.
I looked into my mother's teary eyes and said "I know what it is, and it's cancer."
"I know," she cried.
Up until about 10 days ago I was pretty convinced whatever was wrong with me was a manifestation of a juvenile disease, come alive again in my adult life. The Rheumatoligist called it AOSD, or Still's Disease, a systemic rheumatic condition that is debilitating and incurable. It can be controlled with immunosupressant drugs and whatnot, but there is no cure. It would be something that would have to be dealt with for the rest of my life. Severe joint pain, fevers, rashes, and other seemingly annoying conditions such as pericarditis and liver damage, and a lot of weight lost, which I wasn't exactly upset about. And I had it all, down to the diagnosis of pericarditis last Sunday with my trip to the ER, instead of what was supposed to be a ride home from one of my best childhood friends weddings. When I missed that wedding, one that I had been anticipating for so so long, I knew I was really sick. I had always said that "I wouldn't miss Angela's wedding if my life depended on it." Funny things happen when your life is really at stake however. Things like weddings seem to take a back seat to a pericardial sack not rupturing on the dance floor.
Last week, after complaining to the doctor about my abdomen feeling as if it's going to fall out, he laid me on the exam table and touched my spleen. "well, it's gotten larger I believe." it had showed some enlargement on my sonogram 2 weeks prior, but that was before I could even feel it, now I actually wanted to rip it out. Then he left the room to go get my new blood workup, only to reemerge a few minutes later, white faced, as if he'd just seen a ghost. "I think at this point it would be best if we send you to a oncologist, just to rule out lymphoma. It's unlikely but i'd like to get you in there sooner than later."
Fair enough. So I called the referred doctor and after reading the booking nurse my supposed diagnosis and specifically asking her to see dr.x, she said in a sweet, yet sound enough voice to tell me "well that specific doctor is booked for a little while longer than we'd like to wait to see you. How is Monday for you at 3pm with Dr.Y?"
"Monday is great, I'll see you at 3pm." It was currently noon on Friday.
Still's, from what I can gather, doesn't progress this quickly. Whatever this beast inside of me is has dove deep in me, taken hold of my guts, and as Ozzy put it "is going off the rails in a crazy train." it's the best way to describe it. Completely out of control. Two weeks ago I had joint pain, now I'm headed to the oncologist tomorrow, fearful that my spleen is about to rupture. And the weirdest part is that all of this started because of a slight increase in my CRP level in my blood work, at my checkup.
Whether it is Still's or my gut feeling is actually correct, I've got a hell of a trip in front of me. As I said to my greatest friend in the world, Rachel, the other day, "at this point it's either a very rare, painful, incurable disease that I'll have to deal with for the rest of my life, or it's just your plain old, run of the mill cancer. Either way, it's going to suck pretty badly."
I don't plan to post every day, or some days I may have so much to say that I post three times. Guess you'll just have to wait and see. I don't know where this is going, and I would very much like to keep it that way, because I don't know where life is going. But then again, does anyone really?
What I do know is that if there really some kind of point, some purpose to life, mine specifically, I'm pretty hard pressed to figure out exactly what that is in a very short amount of time. Maybe you can help a gal out?
-MS
Subscribe to:
Posts (Atom)