Maybe not?

I went back to the Rheumatologists office last week and met with Dr. Labarca, because my regular doctor is now out on maternity leave. She started asking me questions that I have answered thousands of times before. I asked her what was going on.

"are you married to this diagnosis?"

Not really. I knew I didn't fit some of the parameters of Still's Disease, especially since I lack an elevated ferratin level, which appears in 99% of patients with Stills. My fevers are also not as high as they 'should' be. She shared some of these concerns with me. Things just weren't adding up.

"I'm just not convinced it's Stills. And I'm not just going to settle, we need a definite answer. I'm not questioning Dr. Horowitz's ability as a doctor, but I'd like to double check."

I was fine with this. She ran a ton of blood tests as well as a specific test for genetic diseases that the lab had a very hard time finding a code for. She also checked my body over for trigger point pain, at which I jumped every time she hit a spot on my body. I was told this is body-wide myofacal pain. She wrote me a prescription for aqua therapy, aka, PT in a pool, which sounds quite awesome. Moving again will be nice.

So I'm starting kineret treatment, which should help figure out if this really is or isn't Stills. Tomorrow is the big day I get to start shooting myself up in the thigh. If it is Stills, I'll notice a significant improvement within a few days.

Improvement would be a great start!

The sleepless fire-breathing dragon

Well, to put it really nicely, the last 2 weeks, since Dec 11th (coincidently the day after I took my first dose of Kineret) has royally sucked. And by sucked I mean like close to having spinal surgery with major complications post-operatively, which I have experienced twice before. I think I'd rather have another spinal surgery than go through what I'm going through now.

I only ended up taking one dose of Kineret, because I miraculously found that my big toe had managed to become ingrown and infected seemingly overnight. I knew it was quite dangerous to have any type of infection while on an immunosupressant so since things like this ONLY seem to happen on weekends, I called my Rheumys emergency line and the doctor on call got right back to me. Dr. Labarca, a very sweet, concerned woman, advised me to stop the Kineret immediately and get to a Soctor, preferably one that could take care of my toe immediately, and get on some potent antibiotics. Long story really short, I found a podiatrist that took me in immediately, took care of my toe, and got me on antibiotics. I thought I was in the clear.

The following day, Sunday, I woke up with a 102 fever, shaking violently. This is atypical of my normal stills fevers, which always appear in the afternoon and generally never go over 101. No matter how much Tylenol I took, the fever would not go down. So I called Dr. Labarca back. She was perplexed and said if the fever goes higher, go to the ER. Also she advised me to see Dr. Horowitz the following day.

I saw Dr. Horowitz the next day who was confused as ever, because my fever hadn't broken yet. She wrote me a script for indocin to keep the fever down and told me not to go back on the kineret form14 days from when I started the antibiotics, which coincidently will be Xmas day.

I did end up going to the ER, per Dr. Horowitz last Thursday. My fever would not go below 101 and she needed to make sure that there wasn't an underlying infection causing the fever, which was nonstop, atypical of my stills fevers. So Matt took me to the ER, and we waited for four hours to get into a room. They (meaning four doctors) checked me over and said they could not find cause form the fever, so they sent me home. A lovely waste of an evening.

For the next almost two weeks, the fever has yet to break, although i have gone as low as 99.5, and my joint and muscle pain is actually worse than it's EVER been. I have been completely unable to do anything, including sleeping regularly for this long. I wake up at least three times a night for over an hour at a time (and I take Lunesta, vallium, and Zanaflex before bed!)

It's been a miserable two weeks. And of course the timing of right before the holiday could not be any more convenient. I go see Dr. Labarca tomorrow to clear me before I go on the kineret again. We will see if she can calm the fire breathing dragon and put it to sleep.

D-Day: A real diagnosis

Well, all of my doctors have finally come to the same conclusion: I do in fact have Adult Onset Still's Disease. This was officially diagnosed by my new, and lovely rheumy, Dr. Horowitz in her office. I also have Antiphospholipid Syndrome, a clotting disorder that results in a lot of miscarriages, but that is a very easy fix when we want to start a family.

Since I knew that D-Day would be today, I aked my hubby to tag along for the apointment. Mom has been at my side throughout the majority of these countless appointments since April, but I felt it really was Matt's place to be there, so he could hear firsthand why his wife is pretty much a crippled, whiny mess all of the time. We gently held hands through the explanation of what is to come, to attempt to control this raging dragon inside of me.

Anakinra, or brand name Kineret, is a daily shot I will be injecting myself in the morning. With luck and persistence, this should put the Stills into a term of remission. When I told this to my Dad, he replied "that's so great that there is a cure..." of course then I had to explain the difference between remission and cure. In remission, the flares can come back at any time, unpredictable.

Dr. Horowitz is pretty hopeful that a 30 day course of Kineret will kick this into remission, but it is such an unknown disease that we just aren't sure. I have no idea how my body will react, or how long, if at all I will be in remission.

On a miraculous note, I went to LindenCare pharmacy (they pretty much do all the meds and injury related equipment for the MLB and NFL) and they managed to get my prescription special ordered and in my hand within 6 hours of me dropping of the script. Now THAT is service. They even stayed late to let me pick it up. Of course, I was so excited I decided to drive myself, which turned out to be the not best idea I've ever had, but I got it done.

After I had the medicine, I got back into the car to call Matt. I was all geared up.
"I finally have hope, the cure is in hand. This feels so damn good." I could hear him smiling back through the phone although I had clearly interrupted his xbox game. "I'm so happy baby, I think this is going to work out!"

Me too. For the first time since I can remember, I have a bit of hope, and that's all I really need to keep going.

\M/ Odd Man In \M/

I am the odd man in. Not out, I'm certainly not excluded. But sometimes I wish I had a choice to be excluded so I didn't have to make choices that will ultimately make me hurt.

Like tonight, for example. My husband is in an amazing rock band, named Odd Man In, and their CD release show is tonight, in Brooklyn. Come hell or high water, or Still's disease, I'm going to be there. It's a huge deal. Tons of press, labels, and promoters will be there. They are headlining six bands and have aptly named the show DeathMas 2010. It really is going to be a great time.

Unfortunately, when you are dealing with a chronic illness, that happens to be flaring NOW, it makes enjoying things like this, things that if I weren't sick would be a thoughtless "let's got!" I have had to worry about for the past week. I literally haven't done anything for four days, outside of a doctors appointment, to conserve my energy. I know it will be very worth it, but I also know that leaving the house at 5pm, and not getting home until 3am the following morning will be something I'll be paying for, well, for a good week.

But I'm so excited I am doing my best at ignoring the pain I am feeling (including the fact that I keep getting sharp pains in my heart again, which I know is pericarditis acting up again). I'm going to get dressed up, wear heels, and put makeup on. I'm going to be the old me, the one before Stills got me.

And just for a night, I'm going to rock hard, and forget what it's like to have a chronic illness!

\M/

What it's not

It's not HIV, it's not brucellosis, it's not any type of hepatitis, nor is it any weirdo type of Lyme. My infectious disease doctor cleared me of any and all contagious diseases that may have been causing this fever, pain and agony for the past 9 months.

I guess it's a good thing in some ways. In some strange way, I was still hoping it would be some sort of disease that could be cured by a course of antibiotics. He said he is 99% sure it is Still's Disease, but that I'd have to get the official diagnosis from my rheumatoligist.

So I have an appointment with her next Thursday, and I guess all the guessing will be over. She'll give me a diagnosis, and hopefully I can start a course of treatment that will work.

It's weird to think that all of this back and fourth, up and down stuff could be over soon. The what it's will change to ares and maybe I can move onto some sort of normal life. Well, kind of normal.

Disappearing Dragons and Spoonie Support

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.

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.

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

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

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

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!

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.

It's who you know, after all.

I'm one of the lucky ones (take that statement as you wish), that is fortunate enough to be in tune with my health, and has gone well out of the general powers that be, to create an unusually complex and thorough medical team of specialists, doctors, dentists and hospitals for myself. Not to push an elbow into his side or anything, but you can compare this with my husband, Matt, who hasn't even seen a regular MD or DDS for a check up or cleaning for, well, since I've known him actually. But I don't want to get started on that.

My point here is that this group of people are all interconnected by me, as their patient. They all correspond, all compare notes, and all work as a team to provide me with the utmost medical care possible, which I believe is saving my life. I'm not trying to kiss any ass here, but it's kind of a cry to people out there, whoever one day may stumble upon this maybe long lived, maybe short, blog, to take a full fledged interest in your health and go seek specialists in different fields if you have even the slightest inkling that something may be even a little bit not right. If you have found yourself a good doctor, they will want to work with your existing doctors to provide you the best care possible. Regardless if they share hospital affiliation, degrees or friends.

My doctors know me on a first name basis, as do their entire staff. Dr. Weingarten, my pain management doctor, and his associate Lou Malesardi know me by just Miranda, and could probably recite my chart verbatim if the need was there. And they see hundreds of patients. I know my specific medical biller in their office, as well as the lovely Marissa who books special procedures and god knows what else, Carolina, the most lovely office worker ever, the office manager, Robin, whom I have her private number on my speed dial, and that is just the beginning. This one office alone has done so much for me in the past, helping me to get through so much suffering that was caused by my spinal problems that I really do know that I couldn't have made it this far without them working with me. Not long ago, Dr. Lou, for the second time, got on the phone with my psychologist, Dr.DeSarbo, who was rxing me Chantix, to stop smoking, and my amazing pharmacist, Harvey Staub of Diamond Drugs, and figured out that the new medication was interacting with the opiate pain killers i was taking and metabolizing them too quickly, sending me into severe withdrawals. Dr.Lou, and Harvey didnt have to do this, it really wasnt their problem, but as always, they went out of their way to help. And that is just one example of my over ten specialists, working together to better my health and make my misery a little less.

I know there will be so many more stories of the kindness of my doctors in the near future. I know I'll here another collaboration story tomorrow when I see Dr. Cohen, my rheumatoligist, who I know was on the phone with my new oncologist yesterday for a while, who will soon be in contact with my PCP Dr Kanterman, who initially sent me to Dr. Cohen when he found the abnormal blood work, that was provoked by my gyno, Dr. Cucco, because I had lost my menses months and months ago.

It's so important to be an advocate for yourself with your healthcare, no matter how healthy you seem to be, or even feel. Again, I felt just lovely a few months ago and now my spleen is on the brink of rupture. You never know. Get started, seek out specialists, and get your doctors in touch with one another. Having doctors advocate for you is even more important than speaking up for yourself, they have some major pull, and it really is all about who you know, after all.

That Room

Dr. Gostonian was not at all what I had imagined she'd be like, and by that I mean barely in her thirties. She made me feel at ease, or as much as at ease as possible as one can be at their first appointment with the oncologist.

There was none of the BS "what seems to be the problem, etc." that one would expect. She had done her homework had memorized my labwork, story and even the size of my ever-enlarging liver, which "should be a maximum size of 11 cm." I am currently topping the liver charts at close to 17.

She did concur with me that what I am experiencing is asymptomatic of Still's Disease, if symptomatic symptoms can even be considered in the first place. It is a rare disease after all, there are no normal bits about it. Then again, you don't typically get debilitating joint pain with lymphoma either, but "it's not completely unheard of, though."

"We are going to move fast,and aggressively. I don't know if we will find what we expect to find, we may find a lot more, or something even different, but we will figure it out quickly and work on it." I did notice that she did casually leave out 'we may find less' but I tried to let that one slip my mind. Mom and I had the opportunity to ask questions, of which we had none, and were moved onto the next room, for blood work and an exam.

A pleasant nurse in her mid-forties came in to take my blood pressure. "Is that your natural color?" she asked a pale and red cheeked me, who was doing the best damn job of acting normal that I could.

"well, it's not abnormal." My skin was freezing to the touch and my face was doing a rendition of Santa Clause on Christmas Eve. Jolly red cheeks, sweating profusely from the brow.

"I'm going to take your blood pressure now, which I would not be surprised to find a little elevated. No one comes out of That Room, with a normal BP."

And the pleasant nurse in her mid-forties was right again. My normal BP of 110/70 had risen to the "slightly elevated" level of 140/100. I don't recall it ever being so high.

We will see just how high it can get when all is said and done.

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