Tag Archives: symptoms

Tramadol is definitely my new best friend

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My Martha Sim is VERY knocked up, and definitely not on Tramadol, though her facial expression is pretty funny!

My Martha Sim is VERY knocked up, and definitely not on Tramadol, though her facial expression is pretty funny!

How could I have thought I didn’t want to blog anymore? I still have so much to say.

It has been over a month since I started taking 25mg of Tramadol every day, according to my rheumatologist’s action plan. I think it’s safe to say that it’s working. My pain level is way down. I still have my bad days, but usually in the morning before I take my dose. I also still get little twinges or, like my left wrist today, something will bother me all day, but it is never enough to stop me from doing anything. Also, 1,000mg of Tylenol usually knocks it out. I bet even just 500mg would. (I haven’t taken any today for my wrist. I’m lazy like that.)

I’m thrilled. It doesn’t help with my other symptoms, but most of them can be managed somehow.

Speaking of other symptoms, my GI issues have changed. It used to go a little something like normal bowel movement one day, constipation or very hard and painful BM with little product the next, and then the next day very soft with a lot of product. For the last month or so, I’ve been going at least a week — sometimes two — without going at all. When I do, it’s either very hard and very little product (like before), or very soft and a lot of product (like before). I am going, though, so I guess it’s not a huge deal. At first, I was pretty freaked out. I thought I was dying or something. Now, I’m a lot less panicky about it and have been proactive on making it better. I’ve been taking a half dose of Miralax every day, and have been trying to eat a lot of fruit throughout the day (a cup or more). Yesterday, I had nothing but fruit for breakfast and for lunch, and today I had nothing but fruit for breakfast. (Which reminds me… I need to go take a dose of Miralax!)

I am pretty sure this is all Tramadol’s doing, since it started around the same time I started taking the 25mg every day. I’m seeing Dr. Greco in a couple of weeks or so, and will definitely be asking him, but as long as the Miralax and fruit help and I’m still going rather than not going, I’m not going to freak out again.

I’ve also been thinking a lot about my lack of a diagnosis. It makes me fucking crazy that I don’t know what’s going on. It makes me fucking crazy that this all might be a post-effect of having mono when I was seventeen. It makes me fucking crazy that not having a diagnosis for my very real illness severely limits my rights in the workplace. If I had a diagnosis, none of the things That Horrible Place got away with would have happened. Or, at the very least, I could have had a lawyer get me a pretty penny. Right now, I’m looking for a part-time job, but in the future I definitely want something full-time, and knowing that without a diagnosis, working full-time leaves me no wiggle room whatsoever for doctor’s appointments… It makes me worryworryworry.

What I was getting to before that whole worryworryworry tangent is that I’m going to ask Dr. Greco about post-effects of mono, and see if we can start looking into that route. Depending on how this next appointment goes, I’m also going to start looking for a second opinion. While I truly feel like Dr. Greco does genuinely care, I don’t feel like we’ve made any progress in the last year. I’m still kicking myself for not rescheduling my appointment at Yale and just canceling it.

Mike’s cousin Jannelle works in a rheumatologist’s office in Rhode Island, and said she might be able to squeeze me in, so I can get a second opinion. We were talking about Mike and I visiting in August and staying for the weekend, so we’d have to decide and then let her know. It might be worth it, though.

I’m so over this mystery illness. I just want it to go away. I’m hoping that maybe it will; maybe it’s some weird post-mono hiccup and it’ll just kick rocks after torturing me for a while.

RANDOM FUN FACT:
G4 has just informed me that someone is busted for marijuana possession every thirty-five seconds, or something like that. These are the things I hear on the TV while blogging. If that’s true, our country’s police are spending way too much time on petty crime. They should be putting that manpower into the dangerous drag racing on South Main! Besides, who doesn’t like a stoner? Everyone should have a requisite pothead friend. They’re entertaining, and insightful.

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.

For Kaylene: More about my symptoms

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Kaylene asked me on my Formspring to tell her a little more about my symptoms, so I decided to do a video.

Sorry about the cut-off! My memory card was full. What I was going to say was that I hope you are well, and to email me at elizawhat@gmail.com to talk more.

When my body needs a day off

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I’ve finally realized that being sick doesn’t necessarily mean tossing your cookies or having to be in bed 24/7. Before, every time someone would say, “It sucks that you’re sick,” I would immediately come up with all of the reasons why I am not sick: I can dress myself, I don’t throw up, I usually don’t have to stay in bed, I can usually work without my chronic pain impeding too much… and the list went on. Now I understand that even though I don’t look sick on the outside, my body is still unwell.

Even though I don’t know exactly what’s wrong, I can still manage all of my symptoms. There’s the big bottle of Costco Tylenol, 1500mg for when the pain gets to red. (The small, random twinges I just ignore.) Two pillows prop up my knees every night to take the pressure off of my lower back. (Some days, I just lay that way because it’s comfy, but many nights my back does hurt after working at the computer all day.) Because I am biologically wired to be at my best after noon and until about midnight, I don’t force myself to work a 9-5 day. I keep A+D and gauze on hand for when the hemorrhoids flare up (and I’ve gotten really good at not having a heart attack when I see blood; these days, I just gasp a lot). I almost always have some kind of liquid nearby to help the unquenchable thirst that set in sometime during the last couple of years (and gum and mints in case I can’t constantly be sipping at something somewhere).

I’ve noticed that my Mystery Autoimmune Disease has three big triggers:

  1. too much physical exertion,
  2. not getting enough sleep, and
  3. being too stressed out and having too much going on at once.

I had to learn the hard way that there are some things I just can’t do, like linoleum block printing in a crafts class, or spending the day walking around. I also had to learn the hard way that I need my sleep, and at least ten hours of it. And, of course, I learned the hard way that being stressed out brings it all crashing down.

There will always be a time, though, I think, that I will forget I’m not the body I used to be over three years ago. I’ll take on too much work, get less and less sleep, and spend a day doing a lot of physical activity, and it’ll send me over the edge. I’ve learned, though, not to push myself during these flareups. It’s not worth making myself more sick just to make money or whatever. I used to hate calling out of work, but in the last year of my part-time job, I stopped forcing myself to go in, and instead made myself stay home and rest. I spent the days following New York Comic Con resting at home, only leaving the house if I absolutely had to.

I’m still a go-go-GO person, but now I know when to stop and rest (sometimes).

This post was featured in ChronicBabe Blog Carnival #16: We all fall down…and then we get right back up again. If you liked this, please check out the other posts featured in the carnival!

Can we fill in the blank now?

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So this afternoon I saw my PA-C, Pam, for the first time in… since before March. Yeah. I’m not proud of my laziness as a patient — especially as an undiagnosed autoimmune disease patient. I was kind of afraid she wouldn’t take me seriously anymore, since I should have at least called the office and told them I’d stopped taking Seroquel and maybe tried setting up a sooner appointment, but here we are. She didn’t treat me any differently from normal, though, so I get a cookie for being extra paranoid.

I always enjoy seeing her. She doesn’t look at me like I’m probably lying. She takes all of my concerns seriously. She always has a game plan, and she’s always willing to investigate my theories, even if I’m wrong. I’ve written about my love for her before, but I cannot say enough how awesome she is. My appointments are never stressful.

Today we talked about why I stopped taking Seroquel, how I’m doing off of it (fine), the difference between laxatives and stool softeners (the former is addictive and the latter will actually help me), how Costco Tylenol is my new best friend but she’s going to have my liver tested a couple of times a year (being that I’m taking it nearly every day), and how my optometrist thinks I could have Sjögren’s Syndrome. Pam is sending me for lab work to check my B12 levels again (just in case, considering I’ve been really tired lately), and to check for Sjögren’s (ANA, double-stranded DNA, and something else, I think).

I know better than to get my hopes up at this point, but pleasepleaseplease let Sjögren’s be the one. Please. I just want a freaking diagnosis; at this point, we* are treating me symptomatically:

  • (Costco) Extra Strength Tylenol for joint pain;
  • Extra fiber (Raisin Nut Bran, oatmeal, granola bars) for irregular bathroom patterns (even though they aren’t helping, which is why I’m going to try a stool softener);
  • Wet and hot — heh — facecloths or tea bags for my styes;
  • Gloves as soon as it starts being less than 50° out;

and anything else as it comes or someone* thinks of it. I know that whatever it is, it’s never going away. This is for life, baby. But I need to know what it is. I want to move on with my life. I want to know what effects it could have on any future pregnancies, if it’s hereditary… I want a family, and I want to be certain that it won’t cause any complications. I also want my sanity; if I have a diagnosis, I can say, “I have ____.” I can go visit Dr. Memet — the rheumatologist who suggested I see a shrink** — and tell her to fuck off, because I have ____. When someone asks me what’s wrong or about my medical history, I can explain it in a few words instead of listing a bunch of symptoms and explaining it all: “I have ____.”

We’ll see. First, I have to go get the blood work done, and the funny thing is, I haven’t done it in so long, I can’t remember where to go!

PS: I know I’m behind on comments again. I’ve read them all as they came into my email. I’m just too lazy to respond, honestly. I keep saying what my sister used to say when she was three and my mom was potty training her: “Not now, maybe later.” :D

*Me, Pam, my family, friends, strangers…

**After seeing me only twice, once to order blood work and again to give me the “everything’s normal” blood work results