Tag Archives: rheumatologist

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.

Pills, pills, pills

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TGIF

Replace those Peanut M&Ms with plain ones for me, please.

I called out of work this morning because…

  • I didn’t get any sleep last night; when my alarm went off at 6:30am, I was completely disoriented (even though I haven’t had a drink in weeks; welcome to my world)
  • my right hip was stiff and sore from all of the walking yesterday
  • I had to start my new IBS medication — Levsin — today, since I couldn’t start it yesterday

It’s a really good thing I was home on the IBS meds. I have no idea how I’m going to work tomorrow… but I guess I’m going to find out. The warnings on it are “may cause dizziness,” and “may cause drowsiness,” among other things. Well, because I am me, I keep having alternating minisodes of dizziness and drowsiness. Even better, I have to take this every day, once in the morning, and then again at night. I have to take it for at least a week before I’ll know whether it’s working. Since I spent $15 on this shit, I’m kind of reluctant to stop so early. I mean, yeah, it’s “only” fifteen bucks, but when you’re “only” spending $15 on several medications, all of the time, it adds up.

Ah, the life of a sicky.

Speaking of which, this weekend kind of sucked. Saturday night I had a killer migraine. The last one I had was in December 2010, and before that, February 2010. Before that, I think the last one I’d had — which happens to be my first migraine — was a year before. So… I think it’s safe to say that I’m getting them more frequently. They really aren’t fun. Mostly because, I’ve become so used to being in pain in general, that I ignore any pain until it’s so bad, I feel like I’m dying.

It’s funny, because they say that pain is a good thing, that it’s your body’s way of telling you something is wrong… Well, listen body, this pain is wrong.

By the time I realized on Saturday that I was dealing with a migraine, I was curled up in bed in a fetal position, stubbornly trying to watch Grey’s Anatomy* while my head split open over and over, and the room spun. I took some Fioricet, which I hadn’t used at all since Dr. Greco prescribed it to me in January. Amazingly, Fioricet did two things: it didn’t get me high off my ass, and it (mostly) got rid of the migraine. (If I had taken it earlier, it would have worked better.) For the last few month, that bottle of blue pills has sat in my drawer because I (stupidly) thought I wouldn’t have to use it for a while.

Ha.

It’s amazing how many pills I am taking. I probably need one of those geriatric pill-by-day-and-night containers, at this point.

  • Vitamin B12 (morning)
  • Claritin-D (morning)
  • Extra Strength Tylenol (as needed, usually in the morning)
  • Skelaxin (as needed, usually in the morning)
  • Tramadol (as needed, usually with Tylenol, usually at night)
  • Fioricet (as needed)
  • Seasonique (7pm, or else… BABY DOOM)
  • Levsin (morning, and night)

Hell, I am probably forgetting something.

I think the reason I was also so tired today was because of the migraine on Saturday. Those always drain me; the next day, I’m always exhausted and the headache keeps threatening to come back. My dumb ass didn’t give myself the chance to relax on Sunday and “recover,” so to speak, so I guess it’s all hitting me today.

Plus, of course, the Levsin.

How many medications are you on? Does it bother you?

Image Credit: TGIF, by Glark

*I’m so addicted to this show. It’s pathetic. I’m on Season 2. The last episode I watched was half of the one after the colossal train wreck. I am a whore for Grey’s, a whore, I tell you. Add that to my addiction to the Millennium trilogy, and I am in need of serious rehab. (Click that link to read my review of The Girl Who Played With Fire!)

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?

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.

On treatment and nose-picking

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I’ve been pretty quiet lately, in general. I’ve just been kind of… processing, I guess. To be completely honest, I’m very stressed, very depressed, and completely exhausted. My blood pressure is scientific proof. There’s so much going on, I can’t seem to catch up. But today I actually got some good news.

Well, okay, so it’s not actually news yet, but I think it’s a step forward.

I saw my rheumatologist today to follow up on last week. (I just realized that I haven’t posted the vlog I made about last week’s fantastical random health issue. The video below is from last Friday, and explains everything.)

I’m a bad girl and didn’t see my gynecologist, but mostly because the cream that Sandy gave me was helping, and I

It cleared up completely, and I’ve just been trying to get rid of the athlete’s foot now (which I didn’t mention in the video, but I’ve had it between my toes for weeks). It’s gotten a lot better, and even Dr. Greco said so today. After doing some thinking, I figured that my diaper rash actually was a diaper rash, from the back-to-back IBS issues lately. Even if it was a yeast infection, the Nystatin that Sandy gave me is also an anti-fungal, so I killed two birds with one stone. I can also use it on my athlete’s foot (which sounds grosser than “yeast infection,” by the way).

However, because my body likes messing with me, I had a new issue to discuss with my rheumatologist today. Since this Monday, I’ve had this burning sensation across my cheeks, as if I have a really bad sunburn. It’s not really red, but it is uncomfortable. When I’m in the sun, it feels worse — just like a sunburn would. I haven’t been in the sun enough to have a burn, and I don’t burn easy anyway, so it’s odd. I thought on Monday that I had a fever, but my temperature was only 98.9, which is like .3 degrees above normal — nothing that would make my cheeks feel like that. I did some research and thought that it might be a Malar rash, but Dr. Greco didn’t seem to be concerned, so I’m just going to hit the STOP BEING PARANOID button and ignore it, unless something drastic happens (like an actual rash appears across my face, or something).

He did however set up the referral for my gastroenterologist, for my IBS issues. He said that Inflammatory Bowel Syndrome can be caused by the same inflammation that causes rheumatoid arthritis, but he does want to double check that nothing else is going on. “If,” he said, “Dr. Zlotoff says that the bleeding is not an issue, I’m going to start you on treatment for Rheumatoid Arthritis.”

Treatment.

Rheumatoid Arthritis.

Those are two things I’ve been wanting to hear — treatment, and a possible diagnosis — for years.

In the meantime, he gave me a prescription for Skelaxin, which he said helps with musculoskeletal pain. I will see him again in about a month, and have to set up an appointment with my gastroenterologist as soon as possible. (I’m going to call in the morning.)

My fingers are crossed that Dr. Zlotoff finds no issue aside from hemorrhoids with my IBS bleeding, so that I can start treatment pronto. If treatment for RA works, that means it’s most likely what I have.

I just want to take back control of my health.

In other news, the nose is doing well. I asked my body piercings expert, Crystal, if it was okay to use saline nasal wash for my sinus infection with the fresh piercing. I figured it would be fine, but I wanted to make sure. She told me that it would be fine since she uses sea salt to clean all of her new piercings, so I decided to try sea salt, too. I don’t know about anyone else, but trying to wash and rinse the inside of your nose with antibacterial soap is a pain in the ass. I started cleaning it with sea salt, gauze, and Q-tips for the first time a few nights ago, and I instantly noticed a huge difference. I could actually turn the stud without hassle, could raise it a little to clean underneath it, and best of all, it was a lot less sore after using the sea salt.

I keep forgetting that I have it, though; every so often, I’ll think to myself, “Damn, I have a huge booger in my nose! I should get it out…” And then I’ll yank my hand away as it starts to move toward my face, mentally scolding myself for nearly forgetting.

Being me is a lot of fun.