Tag Archives: autoimmune disease

I didn't get a treatment plan, but I do have an action plan

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I’m not getting excited about treatment or a diagnosis anymore.

On Thursday (05/12), I saw my rheumatologist. After waiting over an hour in the waiting room as per the usual, I finally got an exam room. Dr. Greco had who I’m assuming is an intern in the hospital look over my blood work, talk to me about my symptoms, and then give me an exam. She was really nice. And pretty. And thorough. I am not at all against seeing an intern. In fact, I’m kind of all for it, since they tend to have fresher eyes. After all, interns were the ones who figured out what was wrong with my godson when no one else could. So, even though I thought that I would be seeing Dr. Greco to discuss a treatment plan for RA, I treated the intern as though I were intentionally seeing a new doctor. I can’t quite remember, but I’m pretty sure her name was Dr. Patavel. I’m probably wrong, though, and I feel bad for forgetting her name.

I showed her my nails, and she said they are pitting (so clearly I suck at research), and that it can be caused by vitamin deficiency. She also said that some types of Psoriasis can cause nail pitting, skin rashes unlike what we normally see as Psoriasis, and joint pain. We also talked about my GI issues and I told her that I’d stopped taking Levsin because it made me sick.

Dr. Greco came in shortly after. He asked her what she thought of me. She ran through everything: I have no signs of anemia, I had a positive double-stranded DNA, I have symmetrical joint pain, my nails are pitting, etc, etc. She also mentioned the possibility of Psoriasis. Dr. Greco checked my pressure points for fibromyalgia again, and as usual, I didn’t have any pain where he pushed (except for in my left shoulder, but I can explain that: stress). We discussed my visit with Dr. Zlotoff again, and he asked her what she would diagnose me with. She said she didn’t know, and then Dr. Greco went into Action Plan mode.

He told me that he wants me to keep a thirty-day record of the pain, on a scale of one to ten (ten being the worst), with a list of what hurt that day. During two weeks of those thirty days, I’m not to take any Tramadol. Then, after those two weeks are over, I’m to take 25mg of Tramadol every morning, to see if it will help the pain after building up in my system. So, the record will show what my pain is like with no Tramadol, just Tylenol, and then with 25mg of Tramadol daily. I’m kind of afraid of going without my Tramadol crutch; even though I can’t take it during the day if I’m out and about, I always know that it’s there when I get home. Still, I went without it before I-forget-which-doctor prescribed it to me, so I know that it won’t kill me to go without it for two weeks.

I’m also to start some kind of exercise program, like Tai Chi. I’m thinking yoga, so that I’ll have an excuse to buy some VS yoga pants*. I’m only half serious; I know that yoga is supposed to be good for toning, when you’re like me and ellipticals and Jillian Michaels videos hurt. Dr. Greco said, “I want you to become an exercise freak this summer.” It’s better than when Dr. Lichter told me to get a gym membership and sent me on my way¹, but still. I guess it’s just hard to believe that I’m over four years into all of this, and still miles away from a diagnosis.

He also said that his cousin is a rheumatologist in Southbury, and that his cousin has a wider knowledge of pain medication. (You know. Since every medication I’ve tried either doesn’t work or causes a bunch of odd side effects in me.) He’s going to talk to his cousin to see if he can get some ideas of other meds I can try. (Yippee? Honestly, I’m kind of afraid of meds now.)

Dr. Greco said again that something is definitely brewing, and now I’m starting to understand that this is going to take more time. It might even take something drastic. Like, I might not get a diagnosis until whatever this is decides to really rear its ugly head and send me into the ER for something life-threatening, like on Mystery Diagnosis.

Here’s what I’ve realized: I want a diagnosis, not treatment. I just want to know. If somehow, out of that diagnosis I get treatment, fine, but that’s not what I’m after. (Then again, today isn’t a bad pain day, so ask me again when I’m laying in bed in agony.) I want to know what’s wrong with me, so that I can move on with my life. I hate that not having a diagnosis also limits protection of my rights. More than that, though, I hate wondering whether I really am just crazy. I know I’m not crazy, because this pain is all very real, but sometimes… sometimes, yes, I question myself. I think, Are you sure that you’re not just letting this happen? Like, creating hysterical arthritis or something? Are you just subconsciously fabricating all of this for attention? Usually, this happens when I’m feeling desperate, like when blood work comes back negative again, or when I go to a doctor’s appointment expecting a treatment plan and find myself back at square one again, instead.

I hate running into the proverbial brick wall over and over.

Brick wall

Brick wall, by zoreil

But that brick wall will never break me. I may feel like I’m cracking quite often (whether it’s health-related or not), but I’ve learned to take a day or two when that happens. During that time, I lay in bed all day and watch Grey’s Anatomy² or Batman Beyond, or play Plants VS Zombies on the DS, or read. I drop all of my problems and worries and let myself separate from it. Some people might call it hitting rock bottom, but I call it recharging. There’s no depression. Just recharging. And once I’ve recharged, the depression and anxiety I felt before feels much more manageable.

So I’m going to keep this record of my pain, and look into yoga, and hope that the diagnosis comes without me having to end up in the ER. I’m going to try to stop getting so excited every time I get blood work done, or a new symptom pops up, or my doctor mentions a treatment plan. I’m also going to try to stop questioning myself when I hit that brick wall; I may not be able to trust my body anymore, but I have to be able to trust myself. I also have to be able to trust my rheumatologist, and believe that he’s still doing everything possible to find out what’s going on.

I have started thinking about getting a second opinion. I’m kicking myself for canceling my appointment at Yale. I’m just wondering if maybe, if I see another rheumatologist, they’ll pick up on something else we’ve missed. I’m also wondering if there’s something to the theory that some autoimmune diseases are triggered by viruses. I had mono when I was seventeen, and mono is known to later trigger some autoimmune diseases, such as Rheumatoid Arthritis, Lupus, and Sjogren’s Syndrome. Mono is caused by the Epstein-Barr virus (EBV), and in some cases some people end up with chronic EBV infection… and sometimes Chronic Fatigue Syndrome. All of these diseases — RA, Lupus, Sjogren’s, and CFS — have symptoms that match my symptoms.

So I am going to follow the current action plan:

  • Keep a daily record of my pain.
  • Look into and start an exercise program.
  • Continue taking B12.
  • Take multivitamin to see if it helps the nail pitting.
  • Call Dr. Zlotoff and talk to him about alternatives to Levsin³.
  • Talk to Dr. Greco about EBV next time I see him (07/21).

That’s all I can do right now.

Image Credit: Brick wall, by zoreil

*Yes, I’m over the whole online order thing. I got over it pretty quickly after receiving a shitload of coupons for free panties and savings. I’m easy like that.

¹This was back when this all first started, probably in 2008. I couldn’t find a PerpetualSmile.net or elizawhat.com post about it, but I’m thinking it’s in one of my old LiveJournals… which I plan on importing here, a little at a time.

²I just bought Season 3! I am too addicted now to borrow them from Sandy; I have decided to collect all of the seasons on my own. It’s pathetic. But I’m totally okay with pathetic, and I won’t even deny that I am completely obsessed with this show.

³I think Levsin did help my IBS symptoms, but it made me nauseous and dizzy… which doesn’t really help me.

A possible diagnosis for my GI problems

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On Wednesday I saw my gastroenterologist. Initially, I was annoyed because I felt like he barely listened to me. I’m still annoyed, but I’m also feeling a little more optimistic today.

According to Dr. Zlotoff (my gastroenterologist), I have Irritable Bowel Syndrome (IBS), and it’s a separate issue from my autoimmune disease. He gave me a prescription that should start working in about a week, and sent me on my way.

I did mention my nail clubbing, but he didn’t seem interested in that.

Still, I have one problem that has a diagnosis, and a treatment; he said there are tons more medications I can try if this one doesn’t work.

If I can start feeling a little better in a week, it will be a beautiful thing. And who knows? Maybe my rheumatologist will still start me on treatment for Rheumatoid Arthritis… and then I’ll have two diagnoses and treatments.

I’m still not very happy with Wednesday’s appointment with Dr. Z, though. I don’t feel like he listened to me at all, and the more research I do, the less I think it’s IBS and the more I think it’s IBD. When I see my rheumatologist, I’m going to see if there is another gastroenterologist that I can see for a second opinion. My main concerns are that my nails are clubbing, which is a sign of IBD. As much as I’d like to have a diagnosis, I definitely don’t want a wrong diagnosis.

I’m almost kicking myself for canceling my appointment at Yale. While I’m happy with my rheumatologist, and certainly don’t want to drive all the way to New Haven for appointments, I kind of feel like I need a second opinion. I’m going to talk with my rheumatologist first, though, and see what he says about Dr. Zlotoff’s diagnosis and my RA treatment plan. I am trying to look at the bigger picture before I hit the panic button. :P

PS: Check out my list of resources about chronic illnesses. Let me know if you have a link I should add! Also, do you think I should add a Bloggers section?

Harassment, health, and hard decisions

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I hate Monday, Tuesday, Wednesday, and Thursday. I only slightly dislike Friday. Why? Because every work day is hell. Not only am I in pain, stiff, exhausted, and most days spend at least twenty minutes in the bathroom, but my job itself sucks.

I have several major problems with my job.

They give me a hard time about doctor appointments. I’ve only subtly referred to this before, but they don’t seem to be understanding at all, even though they claim that they “try to be.” (They have a lot of claims, actually. I’ll get to this.) My boss gave me false information about sick time policies, and I ended up getting in trouble with his boss, the guy who signs my paychecks. (I’m going to refer to my boss as Boss, and his boss as Owner.) However, I’m still not certain that I was ever given correct information about sick and vacation time, because my contract very vaguely states

BENEFITS: Eligible after 30-days of employment or March 11, 2011.
–Entitled to paid holiday time, one week of paid vacation and one-week of paid sick time.

When I missed two days because of my sinus infection and a nasty pain day, Boss told me that I would be paid for the days I missed, because I am salary. Not long after that conversation, he called me into his office again to inform me that he was wrong, that I wouldn’t be paid, that he had previously had no idea how the policy worked, and that I would from here on out gain a small portion of sick time per every so many hours I work.

Here is the kicker: My contract states March 11th, correct? Well, I’ve only recently even started gaining sick time, and have yet to gain vacation time. So far, I have only accrued 1.50 hours of sick time… which is completely off base from what Boss told me, and off from what my contract says.

So, when I have to leave early for doctors appointments — because Boss has strongly voiced that I should work 8:30-4:30 because “after that, our team isn’t around” — I have to make up the hours. I have to tack on extra time to my work day, which would be fine — if my regular eight hours didn’t already completely wipe me out. If I have a bad pain day, or get sick, I have no sick time to use, so I have to either go in anyway (which I’ve been doing), call out and miss the day of pay (which I don’t think they calculate properly, truth be told), or call out and make up the hours throughout the current pay period.

I do not mind going by a sick time policy… when that policy is actually clear.

They hired me for one position, but have me doing something completely different. My contract lists my position as “Social Marketing and Web Design Coordinator.” During my interview, we discussed my social marketing experience, my web design experience, and how much I knew about SEO. I told them that I had a very, very basic knowledge of SEO: meta tags. My resume strongly illustrated my social marketing and web design skills. During that same interview, I was told that I would be doing “just a little SEO.” Upon starting, I was told that I was not to focus on social marketing, and that I was hired specifically for SEO. Um, what?!

Still, I tried. I genuinely love social marketing. I created plans, offered solid suggestions… all of which were instantly shot down, or completely ignored. So, I tried to learn some SEO. Unfortunately, you don’t just magically become an SEO expert. It takes years of experience to know what you’re doing. Yet I tried anyway. They still instantly shoot down or completely ignore my suggestions.

Day to day, Boss has me working on SEO-focused projects. I don’t have a problem with learning something new, but I do have a problem with working on a project that he directly oversees that he completely forgets about the next day. I am not exaggerating when I say that every day he tells me to do something that I have already done — a project that he came up with, that he oversaw, that he uploaded when it was completed. He frequently changes his mind about what I am supposed to be doing, and has told me to ignore any of the tasks that Owner gives me because “they’re not at all a priority” — but that’s another rant entirely.

Even better, when I give him suggestions that he shoots down or ignores, he later presents them to Owner as if they were his ideas.

The girls at work tell me that it’s not just me.

Speaking of the girls at work, I frequently feel like I’m in high school. Every day, they giggle about something, and when I ask what’s funny, I quickly get “Nothing!” as a response. Today, I brought in grilled chicken and a salad for lunch. Not long after putting it in the fridge, the two girls and my boss began loudly commenting that it smelled. I went to use the bathroom — which was fun, and I’ll get to that — and when I came back, all three of them asked me several times if I brought bologna or hot dogs, even after I said no. Throughout the day, they commented over and over that “it smells like bologna!” I got so sick of hearing it, that I didn’t even eat my lunch, because I didn’t want to hear it any more. I thought my chicken smelled like, well, chicken, but to make sure, I asked my mom to sniff it. She said it smelled like chicken, too. It smelled good to me!

It’s not really a big deal. I just felt like they were specifically targeting me… and the daily “mystery” giggles just add to the feeling that I’m not welcome. To my face, they’re nice. I even know one of them; she dates Mike’s friend, and the four of us go out all the time. I didn’t think she was that kind of person, but sometimes, I’m seeing differently.

Each day brings on new health-related challenges. I am constantly combating fatigue, joint pain, joint stiffness, and my GI issues. Today, for example, my wrists and fingers were so stiff that it took me a really long time to type four-word sentences for a To Do list coworker T and I put together for Boss. I typically spend at least twenty minutes in the bathroom, at least every other day. In the mornings, I am so slow that I am now rushing out of the house, when at first I was getting to work fifteen minutes early — and I still wake up at 6:30 every morning.

Cyanide and Happiness, a daily webcomic
Quite honestly, I am waiting for the day when Boss complains that I am in the bathroom for too long. I know it’s coming. I already have my comeback ready — “I have Inflammatory Bowel Disease, okay?” — but still. They already complain when I miss meetings for doctor appointments (even though they have been made aware that I have an undiagnosed autoimmune disease, and therefore these appointments are critical).

These eight-hour days wreak havoc on my already aggravated body. Most days, I come home from work and lay in bed. More and more, I’m even spending my weekends in bed. My Mystery Autoimmune Disease is getting more aggressive, yes, but not being able to rest is really taking its toll. When I worked from home, I could sleep in if I didn’t sleep well the night before, and could take as many rest breaks as I needed to. I’m trying like hell, but I’m having a harder and harder time pushing through it every day. I consider leaving early every day, and the only thing that stops me from leaving early is knowing that I have no sick time to help me out.

I have so many doctor appointments that I am constantly trying to make up for the time missed at work. Thankfully, I got a break last week and this week, but I have more coming up, which I know are going to lead to even more. I’m seeing my gastroenterologist next Wednesday, and he is probably going to order another colonoscopy, since my rheumatologist wants to make sure my bleeding is caused by inflammation, and not something else. Then, as long as the colonoscopy comes back okay, my rheumatologist is starting me on treatment for Rheumatoid Arthritis… and I’m sure that means he’ll be seeing me quite often. I’m also concerned about the treatment itself. As much as I want to have a diagnosis and treatment plan, I have no idea how the treatment is going to affect me. Will I be able to work? I wouldn’t possibly be able to make up all of the time.

Cyanide and Happiness, a daily webcomicFor now, I have to wait and see what happens, but I know I have some tough choices ahead. I’d like to look for a different job, but I don’t really want to do that until I know the details of my treatment; I can’t exactly start a new job and then suddenly only be able to come in three of the five days a week, for example, if my treatment includes physical therapy or something. Hell, I’m not sure I can keep my current job if I’ll be doing physical therapy, regular checkups, and different tests to make sure the medications aren’t affecting me badly. I’m sure that before I can even start treatment, I’ll probably have to have x-rays and stuff to check on the lining between my joints.

I want treatment, so badly. If it comes down to choosing between treatment and work, though, I’m going to be in trouble; I can’t afford treatment if I don’t work. I looked into disability a little and I can’t figure out how the process works, where to start. Throughout the last four years, I never once thought that I might have to be on disability… but here we are. Some days I feel like I should be on disability, while others I mentally kick myself for even thinking I need it.

Cyanide and Happiness, a daily webcomicAnd while my mind runs through all of these things, I just have to keep reminding myself to wait and see, because that’s all I can do. Keep trying to push through each day, and wait and see.

One good thing is coming out of all this: I am learning that I’m pretty mentally strong (or at least pretty fucking stubborn). I just wish that I wasn’t simultaneously so mentally weak; I frequently break and just cry. There are so many other people who have it so much worse, that I feel like I shouldn’t be complaining; I should just make it through without having to push through.

The difference between Inflammatory Bowel Disease and Irritable Bowel Syndrome

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I always thought that Inflammatory Bowel Disease (IBD) and Irritable Bowel Syndrome (IBS) were the same thing. I mean, they’re both characterized by gastrointestinal issues, so I thought that they were two different names for the same disease.

Inflammatory Bowel Disease is an autoimmune disease, when there is an “immune reaction of the body to its own intestinal tract.” From what I’ve read, IBD seems to be an umbrella term for at least two autoimmune diseases: Crohn’s Disease and Ulcerative Colitis. I know someone who has Crohn’s, and someone else who has UC.

Irritable Bowel Syndrome can be caused by problems with muscles in the intestine, or an infection, but it’s not classified as an autoimmune disease. They apparently don’t really know why it’s caused, though. I know a few people with IBS.

What does this mean? The two are different, so all the times I was referring to IBS in conversations and in my blog, I actually meant IBD, and therefore had no fucking clue what I was talking about. Knowledge is power! :D

If anyone can point me in the direction of some more information, I’d be really grateful! Since it seems like I’ve got IBD along with whatever the fuck is wrong with me, I’d like to learn more about the differences between the two, and how I can best help my IBD-like symptoms. (Yes, I know, these are things I should be asking my doctor. I am definitely planning to talk to my gastroenterologist when I see him [at the end of the month, not next week like I'd thought].) Noni suggested some things rich in fiber that I can eat, but I honestly feel like my body doesn’t give a shit — no pun intended — how much fiber I do or don’t eat. It just does what it wants. If you have IBD and have some tips, please share in the comments!

My nails are clubbing, and not the good kind

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This morning I noticed that my index fingernail looked kind of… weird. What the fuck did I do to it? I wondered. Shortly after, I realized that the same fingernail on my other hand looked the same — as if the nail had arched into an hourglass shape on its own. I looked at my other fingernails and they all looked fine… except for both of the index fingers’ nails.

My right index fingernail

My right index fingernail

The photo is kind of blurred — you can thank my Kodak software, which deleted the nice, clean photos Mike took, when I transferred them to my laptop, so now I just have the ones I took on my own with my BlackBerry — but you can still see the clubbing.

Fingernail clubbing

Fingernail clubbing

Okay, this one is clearer, and you can see it a lot better.

Anyway, when I first noticed it this morning, I tried to ignore it. I made it all the way to the end of my work day, and then I broke down and did some sleuthing on Google. It turns out that my fingernail “deformity” is a medical condition called fingernail clubbing. I only figured it out after Googling “nail deformities” or something like that, and found this slideshow. Obviously, my case is not as bad as the image they use, but the description fits. As soon as I read “clubbing is also associated with inflammatory bowel disease,” I went into SUPER GOOGLE MODE and Googled “nail clubbing.” I learned that:

  • nail clubbing is not painful (so at least there’s that)
  • it could be a whole lot worse than the case I have
  • it’s a definite sign of something going bananas in my body — most likely inflammatory bowel disease

Since Inflammatory Bowel Disease is caused by Rheumatoid Arthritis, I’m guessing that this is just a happy little chain reaction. I always knew that you could see your general health in your fingernails, but damn. As the day has done on, the clubbing has gotten worse, and is now in most of my fingernails. I have a feeling it’s going to get worse… but as sick as this might sound, I’m hoping it does; come Monday, if it’s still there, I’m calling out of work and calling my rheumatologist. I cannot wait until Thursday when I see my gastroenterologist. This could be a very important piece of the puzzle, though I might not like the final answer.

I’ve accepted that this is all my reality. For the past two weeks, I have been in nonstop pain (except, of course, when I take my medications). I have spent an awful lot of time laying in bed. Last night, I finally broke down in tears as I drove to pick up Mike from work. I’m tired, and I’m tired of being in pain. I’m tired of popping pills to try to alleviate said pain. I am on a 24/7 pill schedule (which I created through trial and error last weekend).

At 6:30am, I wake up to my alarm. It takes me almost ten minutes to get out of bed most mornings, because I’m so stiff. Usually, taking Tramadol and Tylenol Extra Strength the night before helps with the morning stiffness. (Please, please do not hold back your morning stiffness jokes in the comments. I could use the inappropriate giggles.) When I finally make it out of bed and into the bathroom, I take a Skelaxin. Skelaxin only works for the first half of the day (though I am still experimenting with the timing of the second dose). Later on at night, I take my Tramadol/Tylenol cocktail. If I take it too close to my last dose of Skelaxin, I get really fucking dizzy and physically cannot be vertical. (There’s a joke in there. I’m leaving it up to you, dear readers. Comment away!)

I go to sleep shortly after, and then I wake up in the morning and do it all over again.

It is fucking exhausting.

But here we are. I have finally accepted this as reality. My Mystery Autoimmune Disease is kicking my ass. I’m terrified that I’m going to end up unable to work a job where I leave the house and work in an office for eight hours. This entire last week has been hell. My feet have been too swollen to wear regular shoes, like sneakers, so I’ve been wearing my Nike sandals. I don’t know if it’s because the joints are swollen or what, but about an hour into wearing anything other than my Nike sandals, I have to get my feet the hell out of those shoes — as if I’ve been standing on them all day. Top that with intense joint pain 24/7, and fatigue, and the Inflammatory Bowel issues, and by the end of my work day, I’m completely spent. You wanna talk about being out of spoons? Every day this week, I’ve had two or three spoons a day. Today I actually felt good. I was still in pain, of course, and constipated, but the pain was a 3/10 instead of a 7/10 or 10/10 or 100/10 (like last night). Even then, eight o’clock smacked me in the face with a good dose of fatigue.

I have been trying for days to write about this, and kept hitting a wall. (Yesterday, I didn’t even try. I just laid in bed watching Batman Beyond.) This afternoon, while driving home, I accepted this as my reality. Like my mom said, tomorrow this flareup could be over and I could feel kinda normal. I hate to say it, but I feel like normal of four years ago is far behind me, and that the only thing ahead of me is illness — nail clubbing and all.

But I’m not just going to give up. I might not be able to get better like you can with a sinus infection or the flu, but I can hold on to my dreams. I can hold on to the fact that I have a man who loves me so much that he will lead me to my bed when my medications overlap, tuck me in, and do everything I would normally do — like save my blog drafts before shutting down my laptop, move my comics to a safe place so that Squirt doesn’t mistake them for chew toys, and get my earplugs — so that I can avoid being vertical and falling over. I can hold on to the fact that my cat comforts me when I’m in agony. I can hold on to the fact that I have awesome family and friends (both off- and online).

I have to admit, I never thought this disease would take me to a day where I’d have to stay in bed, but I’ve found that this is my reality more and more. Fortunately, I have a nice collection of DVDs and books for those days when I just have to stay in bed.