Tag Archives: medication

Sicky Update: I Have a Treatment Plan (and a Tentative Diagnosis)

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I saw my rheumatologist last Monday (11/21) for the first time in about three or four months. My blood work came back fine, of course. (And I discovered that we’ve been testing my collagen levels all along.) We went through my blood work from the past four years, and again looked at the numbers from my ANA test. He explained that my ANA levels are just at the curve of the bell, which medically speaking is taken to mean that I have no disease, but research he’s done and research by other practitioners shows that borderline levels combined with the symptoms of Rheumatoid Arthritis or Lupus are legitimate and shouldn’t be ignored. It’s just hard to diagnose. He drew a quick diagram to explain it:

The ANA levels bell

The ANA levels bell

People diagnosed with RA or Lupus are about where the green dash is. I’m where the red dash is. (Shushy. My diagram is awesome.) He said most practitioners ignore us borderline people, but he believes that those in the borderline ranges with RA-like symptoms are legitimately sick. It’s still hard to really diagnose me, though, so after talking a little more about my joint pain and stiffness, he decided to start treating me for Rheumatoid Arthritis with a medication called Mobic. Mobic is a non-steroidal medication that reduces the inflammation that causes pain and stiffness in your joints. There aren’t really many side effects, and I’m also really comfortable with it being non-steroidal, because most of the medications I’ve heard of for RA have some kind of steroid in them, and those have all kinds of nasty side effects. The only thing I have to watch out for is stomach ulcers because it’s basically a high dose of Motrin (which is ibuprofen). He’s monitoring me through blood work and regular visits, though, so I’m not really worried about it.

If the Mobic doesn’t work, he’s going to try me on Plaquenil, which is a much stronger medication with a lot more side effects.

I asked him about potential joint damage, because of how often and how badly my hips, for example, hurt. He said usually you can see from the outside; my hands would be visibly damaged. He ordered xrays of my hands and hips, though, so that we can keep an eye on them. I really like that he listens to my concerns and actually addresses them.

At this point, I’m pretty sure I have Rheumatoid Arthritis. The symptoms match perfectly. The only thing that’s missing is blood work results that are consistent with normal RA diagnosis measurements, but if I respond to Mobic, Plaquenil, or some other RA treatment, I think it’s safe to say that I definitely have RA. It’s also the diagnosis code my rheumatologist used on my blood work order and my jury duty excuse request form. So, as far as I’m concerned, I have RA until it’s proved otherwise.

One Title Does Not Fit This Post

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I don’t really know how to say this, so I’m just going to say it: I found out yesterday that Noni’s tumor grew a little. I know that “a little” isn’t anything to freak out about, but I can’t help but think, “What the fuck? The hormones were supposed to shrink it, not let it grow.” I’m trying to stay positive and not freak out, but it’s bothering me. Her doctors are going to reevaluate the hormone treatment and see if they should try something else, or if she’s going to need surgery to have it removed like they originally planned, or what. I don’t have many more details than that. I think they’re going to do some more testing on the tumor. Honestly, I kind of went into this numb zone where I didn’t hear much else beyond “tumor grew a little,” and I’m kind of afraid to ask someone because I kind of feel like an asshole for missing most of the conversation.

Because I don’t really want to think or talk about that, I guess I’ll tell you about my second least favorite subject: My latest visit with my rheumatologist!

I saw him on on the 21st, and after waiting an hour like always, finally got into an exam room. I saw one of the nurses first. She took my blood pressure, asked me about medications, then went through a whole list of questions, like, “Do you have any joint pain? Headaches? Chest pain?” etc. Some of them were relevant, but most of them weren’t. I told her about my six-day headache, and she was kind of surprised. I forgot to tell her about my switch from oral birth control to the Mirena, so when my doctor came in I made sure to tell him about both the headache and the Mirena. He didn’t seem concerned about the headache, though. (It did, by the way, finally go away on the 23rd. I haven’t had one since, knock on wood.)

We talked about my Tramadol and how I’ve been on 25mg and how it’s radically helped my joint pain, and he seemed satisfied with that. He asked me if I’d started Tai Chi or anything like that and I told him I had planned to, but lost my job so couldn’t afford it. We also talked about my UTI symptoms. After telling me I needed to get a urinalysis done that day and get blood work done in two to three months, he asked if I’d followed up with my PA-C at my regular doctor’s. I hadn’t, and hadn’t even thought about it, so he said I should follow up with her… and also with Dr. Lichter.

Dr. Lichter is a Physical Medicine and Rehabilitation specialist. He’s the one who did several nerve conduction tests on me, all of which came back fine, and then told me to get a gym membership and sent me on my way. I didn’t have a problem with him until then. I have a huge problem with doctors dismissing health problems when they can’t quickly diagnose them. He might be a fantastic doctor, but he obviously didn’t know what to do with me and didn’t think he needed to try anything else. I know I’m a mystery. I’ve had countless doctors tell me that. My blood work is wily. Honestly, if I were a doctor, I might have reason to think I was a drug addict just looking for a prescription, or at the very least, a hypochondriac. Unfortunately, before my daily dose of Tramadol, my joint pain was very real and definitely not just a twinge here and there that I freaked out over. This shit kept me up at night on many occasions that I’d rather not remember. This shit interfered with my life on many levels. If I’m a hypochondriac, I’m a really good one.

Dr. Greco wrote my PA-C’s office and Dr. Lichter’s office on the “copy to” part of the blood work order, and told me he’d see me in six months, and to follow up with Pam (PA-C) and Dr. Lichter in the meantime. I know I don’t have to see Dr. Lichter. I’d definitely rather not waste the $40 copay. Hell, I can’t even afford any of my copays right now, so I’d really rather not waste it on a doctor I don’t like and don’t want to see. I’m going to make an appointment with Pam and see what she thinks. Honestly, I’m not sure what the next step is. My symptoms are, for the most part, finally being managed. I could just walk away and be content with taking several medications — Tramadol, Miralax, a slew of vitamins — for the rest of my life. At the same time, though, I still really just want to know what the hell caused all of this. It’s kind of hard to justify more sleuthing, though, when my symptoms are being managed.

I did my urinalysis that same day, and the next day got a call from Dr. Greco’s office. I have a bladder infection, and am on Cipro. I can’t even think of how many times I’ve had bladder infection or UTI symptoms, had my urine tested, and came back with nothing. I had it so bad one time, I was screaming and crying. (I think I may have even gone to the ER, but it was a long time ago so I’m not positive.) I’m shocked that something actually showed up this time. I’ve been feeling like shit for a couple months now.

Cipro sucks. You can’t take it within so many hours of magnesium, calcium, or milk product, or with any of those things, so I am having a hard time remembering to take it. I take all of my pills in the morning after breakfast. I can’t take Cipro then because I usually have some kind of milk product; if I don’t have cereal for breakfast, I usually drink coffee with cream. It’s definitely annoying.

I’m also annoyed because I had a urinalyses when I had my annual at my gynecologist’s, and apparently the bladder infection didn’t show up. My symptoms then were worse than they are now. Speaking of my gynecologist, I missed my appointment today with her to check my Mirena. I completely forgot until I started writing this. The worst part is, their reminder machine called me yesterday, and I have it written down in my planner. I have completely lost track of my days.

Not having a job is killing me. I know I keep whining about this, but I’ve never had such a hard time finding one. At first, when I lost my job in May, I thought, Whoo, vacation! Now I am bored, a couch potato, have no life, and have no money. The bills are piling up. Most of them are medical bills, but I have to give my mom money for my car insurance next month, and then in October have to pay at least $50 toward my student loan. And if the school ever sends me my acceptance letter, I’ll need gas to get back and forth from New Haven. I’m only planning on taking one class (unless something changes drastically, like I get a work study at the school), but still.

I feel like I’ve been going through one of those really long rough patches, and I’m almost at the part where I’m going to get through it. It’s not just work related. It’s my health, family — everything. I feel like I’m on the edge, that I just have to keep swimming. It’s been a long, long rough patch, let me tell you. I cannot wait to get to the other side.

How did you get through a long rough patch?

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?

How shoving a weird instrument up my nose made me feel better

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Add “ear, nose, and throat specialist” to my growing list of doctors.

I called out of work today because I felt way too shitty. I didn’t sleep well last night, and my face felt — and still feels like — it’s plugged up with FIRE. (That’s the closest description I can come up with. My sinuses are inflamed, blocked up, and fuck do they hurt.) I slept for another three hours, then decided to call the ear, nose, and throat specialist because my sinuses weren’t really draining, at all. Usually, I can hang in there for a couple of days while I cough up nasty shit and blow even more nasty shit out of my nose, but I wasn’t able to get much of anything out — even with saline spray. Surprisingly, I was able to get an appointment for this afternoon.

The specialist I saw was really nice. (I suck, because I already forgot his name. I think it was Dr. Winicki, but I could be wrong.) He looked at my ears, which were surprisingly fine, given the fact that I feel so much pressure. He said the pressure is actually coming from my nose. Well, fuck you, nose! Then he looked inside of my nose, using some kind of tweezers. It kind of hurt, but it was nothing compared to what came next. He plugged up both of my nostrils with some gauzy stuff soaked in some kind of super decongestant, and after a few minutes pulled it back out, pulled open my nostrils again with the tweezers, and stuck this thin instrument to look at my sinuses. Fuck, that thing hurt! I’m usually pretty good with staying still during examinations, but I actually pulled away after a few seconds, both times. (He looked at each side.) It burned like crazy!

He said that there was definitely pus leaking from my sinuses. (Eew.) He said that I didn’t need the “big guns,” though, and gave me prescriptions for amoxicillin and Nasonex. I figured that would be the extent of the visit, but I was wrong. He said that since I get sinus infections so often, he’s seeing red flags and wants to know why. He had me set up an appointment with them for allergy testing, to see exactly what is irritating me so that he can give me a treatment plan. One of the things they are going to test me for is mold, which makes a lot of sense to me, since any time I am in a place where there is mold, I am always sick.

I like when I find good doctors.

I’ve already started the antibiotic and Nasonex, and I’m feeling a big difference (though it’s all thanks to Nasonex; it’s too early for the antibiotic to have done anything). Now when I feel like I need to blow my nose, nasty shit actually comes out! I win!

I am honestly really looking forward to the allergy testing. I always thought only people with severe allergies — as in, life-threatening allergies — had to have that done, not those of us who get sinus infections if you look at us wrong. But if I know what irritates me, I can take steps to prevent it. Hell, if there’s at least one aspect of my health that I can control, I’m all for it!

In other, non-sicky news, I wrote a 962-word chapter yesterday for Sade On the Wall. I’ve decided to do some bonus chapters, mostly because it was a random idea I got laying in bed one night thinking about Popi, and everyone who read the first draft was really excited when I tweeted about it. I also just really want to see how Sade copes.

I haven’t done any writing yet today, and don’t think I’m going to. I’m actually kind of thinking of taking a nap or going to bed early. I skipped St. Patrick’s Day dinner at Mike’s mom’s because all of the running around completely wore me out. (It took me forever to find the right Ear, Nose, and Throat office, since there are apparently three different, unrelated ear, nose, and throat specialist groups right in the same building cluster — all of which have names using some variation of Ear, Nose, and Throat.) Mike wants to go out for a St. Patty’s Day drink later, too, but I think I’m also going to skip that. I’m just too tired, even though today was a warm, sunny day.

Today was also Day 6 of Celebrex. I started it on Saturday. I think it might be helping a little with the stiffness and swelling, but my joints still hurt. Maybe I just need a higher dose. I hate to be whiny, but I’m really tired of experimenting with medication. I can’t really complain here, though, because Celebrex has been very good to me. I don’t think it bothered my GI system at all (mostly because all of that IBS stuff is pretty typical for me). Since I’ve been on it for almost a week, I can go get that blood work done, probably next week. I need to find out how late the blood work clinic at St. Mary’s is open. Working all of my doctor appointments around a full-time job is really difficult. It makes me really miss working from home. I’m working hard on Freaking Bookworm so that I can do that again. It’s my dream to make a living writing and reading books.

Anyway, I’m exhausted, so I’m going to lay down and watch a movie. How was your week?