I'm Not Gonna Worry 'Bout Nothing

Dermatologist

2009-08-24T18:49:00.003-05:00

Today I saw a Dermatologist for the first time in about five years.

For almost two months I have been extremely broken out. When I was a younger teen, I had severe acne. So when I say I have been extremely broken out, I don't mean I've had a few more blemishes than normal. I mean it is from my shoulders all the way down my back. It's up my neck. It's pretty much everywhere.

I went to see the campus doctor July 28th for my acne and he put me on antibiotics. My Rhuem. specialist put me on my emergency drugs long-term while this is dealt with, since I can't be on autoimmune suppressants and antibiotics at once. I've been on prednisone ever since.

About a week ago I went in again because I've got these little bumps that are definitely not acne on my arm. I was afraid there was another infection going on along with the acne. The campus doctor referred me to the local dermatologist.

Basically here's what he did:

He prescribed me like 4 skin washing things. I have to shower twice daily.
He named the little bumps, but I don't remember what he called them. Hopefully I'll find out tomorrow after I pick up the paperwork.
I've also got these bruise-like colorings on my legs, but they aren't bruises. He thinks these are side effects of being on prednisone.
I had him look at my damaged toe, which is really, really bad right now. It looks like the nail is about to break at the bottom. He said to watch it closely, keep it trimmed, but not to remove it right now.

Unrelated to this: Lately I've experienced pain in my arms. It's happened off and on over the last month. The pain is similar to the early stages of RA in my thumb - I bend/stretch my arm, and unbearable pain floods up my arm to my shoulder and burns. The pain has been so severe that I've stood gripping my arm and crying out quietly. Afterwards, the arm feels fevered/hot inside for about a half hour to an hour, depending on the severity of the original pain. The pain feels like it's in my muscle, but I remember that with my thumb I thought the muscle was the effected part, too.

I'm not sure if this is because of my syrinx, RA, or something totally different. Praying that it won't get any worse, because it's already starting to interfere with what I can lift, pull, or move.

The Up-Coming Doctor Events:

Early Sept: I see my Rhuem, Endo, and all-around doctors
Later Sept: Follow up with campus doctor
Early Oct: Follow up with dermatologist
Mid Oct: Full-body MRI
Nov: Follow-up with nuerologist.

This Week in Symptoms...

2009-07-12T16:46:00.003-05:00

Recording this here because my medical tracking calender doesn't have enough space on it.

Thurs., the 9th - I am really swollen, so I start prednisone. This helps cut the inflammation and brings back my appetite, which had totally disappeared after the nerves of moving.

Fri., the 10th - I am feeling great all day. I get groceries. I carry them up - no problem. But I have to carry up two cases of six pack water bottles later. I lift them and think, I can't do this. This is too heavy. I shove that notion aside and try my stubborn positive thinking methods, repeating to myself, I will do this. I will be fine. There are some guys milling around the stairs to my dorm room. I almost ask them to help--my hands are really hurting now--but I chicken out. I drop the stuff by the stairs anyway and no one helps. I pick it up again with a hard time and start up the stairs. I am crying by the top because my hands feel like they are going to break. I get inside with some trouble and dump the stuff on the floor. My left arm goes completely numb and I have trouble lifting it. That arm/hand begins shaking very badly. I lie down and rest, waiting for it to pass. It is numb to the touch. I can move it, but when I do it feels disconnected from my body - like I am moving it through a cloud, or like I am watching it move but not feeling the movement. The feelings eventually pass, and by the next morning it looks a little swollen but it works fine.

Sat., the 11th - My damaged right big toe hurts after going on a walk in my running shoes.

Sun, the 12th - I wake up with my left thumb hurting badly. Over the day the pain recedes. In the evening, I begin to feel unconsciously uncomfortable. Finally I am flexing my hand and the act of straightening my fingers sends shots of extreme pain up my arm. I notice then that my hands have begun to swell and my right fingers are very agitated. I can't think of why this is happening since I am on pred. I check the air conditioning, and someone had upped it to 77. That's the only reason I can think that I am so swollen.

RA in the Working Environment

2009-07-12T16:45:00.000-05:00

I really, really have struggled this week with figuring out how I am going to have a job with my Rhuematoid problems. The first day at Admissions, I had to do some heavy lifting. It was okay the first time, but by the second time I was gasping in pain when I put down the box. I do not really know how to explain it to a co-worker or supervisor, because I do not want to look like I am trying to throw the hard work on someone else. I hate looking or feeling weak. But the truth is I've already had at least three times where I've just been trying to open my door and I cannot get it to work and I'm nearly crying with frustration.

Because of all that, I started on my emergency medication two days ago. It has cut the inflammation enough that I feel sort of comfortable again, and it has helped bring my appetite back. I have been feeling less exhausted and more confident with it. Of course, in another week or two I will have to go off it again... but hopefully Humira will help that transition, and/or I will have a better idea of what I can and can't do and what I should or shouldn't say.

Description of the HUMIRA Shot

2009-06-30T09:14:00.002-05:00

I thought I'd write this, mostly for friends/family who want to know why taking the shot makes me cry normally.

When you take the HUMIRA shot, it is automatic so someone clicks the button and the needle shoots into you. It stays in there for ten seconds and then pulls itself out.

Imagine that when the shot is clicked, someone hits you with a baseball bat in the stomach. The baseball bat dissolves into burning poison acid and thrusts itself into your middle. It keeps pushing into you, burning and stinging everywhere. Even that's not an accurate description... It is like a chemical burn, not a heat burn. And the stinging is like being stabbed, not like a little, "Oh, my foot fell asleep and now it tickles!"

Finally the shot yanks out of you but the pain is still there. The spot hurts without anything touching it, but it hurts really, really bad if anything comes in contact with it. For about a half hour it continues to hurt on and off. It still is tender that night.

There you go.

Eye Doctor

2009-06-20T22:32:00.001-05:00

Saw the ophthalmologist a few days ago. My mom was worried I was losing my color vision, but we did all the tests and everything's normal. I do need to get a new prescription of glasses sometime... Not sure when I'll get that done.

Humira and Methotrexate

2009-06-08T14:40:00.002-05:00

I started Humira two weeks ago. The shot is very painful - it burns pretty bad. So far the one time I tried to give it to myself, I yanked it out as soon as it started injecting. Laura has been doing it for me so far. I'm hoping I can ask a nurse to do it at Berry, at least until I get more used to the feeling.

Today I went in and got another shot in preparation for Methotrexate. I spoke with my Rheumatologist, and he says that as I up my dose (every week it goes up until I'm taking six pills once a week) I'll probably start feeling sick. Mom says that her friend who's on it plans a day of the week where she doesn't do anything, and that's her sick Methotrexate day. I'm trying to figure out how I can work this while working part time and doing college work. I was going to do it on a Saturday, but then if I wanted to hang out or if I was going somewhere for the weekend I'd be pretty useless. I guess I'll have to see how my schedule comes out.

My doctor said that if I get sick and it persists, it wouldn't hurt to call/come in. If I'm running a fever, I should definitely come in. I was wondering about that, since all these drugs are messing with my immune system.

So far I'm feeling better, though not perfect.

The Neurologist: Second Round

2009-06-03T18:21:00.002-05:00

Today I met again with my neurologist. This was mostly a follow-up, and it went very fast.

Basically: He doesn't know what's going on. He thinks it could be the syrinx causing my tremors, or it could be a side effect from one of my medicines, or it could be something else. But because of all the other junk going on, he doesn't want to give me medication that could possibly do nothing but add more side effects.

He does not think it is a result of my autoimmune system attacking my nervous system, because something would have shown up on my MRI if that was going on.

He wants me to do what the neurosurgeon said and return in October for another MRI. From there we'll see if the syrinx is bigger or smaller or the same. If my symptoms get worse, or I start having heat/chills, confusion or numbness when I have the tremors, I'm supposed to go in immediately. When/if it gets worse, I'll talk about having the surgery - until then, I should be able to cope without it.

Rhuem. Appointment and General Doctor

2009-05-20T13:06:00.002-05:00

Yesterday I saw my Rhuematologist and my all-around doctor. I saw my general doctor first, and asked her about getting a drug I need before I go on the chemo drug. She wanted to run more bloodwork before she gives it to me, and she was unsure if she wants me to take it in a shot or a pill. Today she called to say the first round of my bloodwork has come back and looks normal, but after staying up all night researching all of my problems she thinks that with the Reynolds Syndrome I have a higher risk of blood clots, so she wants me to do the shot. Not sure what all that entails yet....

She prescribed Zertec for my allergies that showed up in my MRI. I'm supposed to run to the doctor if I ever start feeling my face get tight and stuffy, or my nose is really runny, or something. I guess that it's not bad as long as I'm feeling okay, but it could get serious...?

While I was vacationing in CA, my really ugly toenail cracked. What, you don't know about my super nasty toenail? See, I've had Reynolds Syndrome for around five years, and about a year ago my right big toenail started going yellow and gross because of it. Look, I took a picture!

Beautiful, yes? I really admire my depth of field.

Anyway, I asked my doctor what I was supposed to do about the cracked nail, because it was split right across the middle. (You can see the crack if you look carefully at the picture.) She was cautious and cutting it, because she didn't want to if the skin underneath wasn't done healing. But as she looked at it, she did end up cutting it off except for the far right side, which is still attached to my toe. So now my toe is even uglier. Except now I have to wear a band aid all the time, so no one has to look at it. (Note: You can get your siblings to do almost anything if you threaten to touch them with your rotten looking toe.)

I also asked her about the two remaining sets of immunization shots I have left, which I can't really take with my Rhuem. drugs after I go on those. She thought that I could go down and get the last ones, so I went down later. But they wouldn't let me take them. Today my doctor called with the bloodwork results, and she said that they were feeding us a load of nonsense so she's going down to make them let me get my last set tomorrow.

This first appointment was really fast, because I had an appointment with my Rhuematologist right after it.

Last time I saw my Rhuematologist, he gave me Prednisone for a short-term fix to try and slow down the rapid increase of damage I was having. It ended up being the perfect timing, considering on the second day I was on it we drove to CA for 28 hours straight. This drive would have been torturous, but the Prednisone worked like I charm and on the dawn of our overnight drive I found I could make a fist with my right hand for the first time in months. It was also extremely nice to not be inflamed while I was playing with my three year old niece (who was not very gentle with my hands).

I told him about all of that. I relayed everything from my spinal surgeon appointment and my appointment with my all-around doctor. We decided that I would wait to go on Methotrexate until my other doctor had approved my other prescription, but I could go ahead and start Humira. I got a fun little box of goodies (namely: a DVD and practice pen).

I asked my Rhuematologist about running. When my other Rhuematologist diagnosed me [incorrectly] with Fibromyalgia, he said I shouldn't run or do something that stresses my joints (like dancing). With moving off to school and such soon, I wanted to know what would best work for me as I try to take advantage of the classes and such they offer. He said that I can run, and that he'd encourage me to exercise however I can, because exercise normally helps in the long run even if it's a little painful. So now Mom is trying to convince me to run a 5K with her... Which I'll probably try to attempt.

Anyway, I have the Humira to start taking. It's a shot, sort of like a diabetic's blood checking tool. You hold it up to your stomach and it shoots out, injects the stuff, and shoots back in the tube. It doesn't look absolutely awful, at least. I'm supposed to do it once every two weeks. I'm going to try and do it on Mondays. I'm also going to attempt to do a dietary thing before I start, just to rule out food allergies once and for all...

I think that's it. I have an appointment with my neurologist on June 3rd and with my Rhuematologist and all-around in late June.

Spinal Surgeon

2009-04-29T15:44:00.002-05:00

Saw the spinal surgeon today. It was sort of funny, because when he first came in after looking at my MRI pictures he was like, "You are very strange." I was like, "I know."

He went through the normal long list of questions, and then checked all my reflexes and pushed me around some like the neurologist did before.

After showing my my picture and talking about my lack of falls or car accidents, he laid it out something like this. My syrinx (fluid in spine) can be caused by one of four things: 1) An injury, such as a fall or car accident, 2) A tumor, 3) I was born with it (very rare) or 4) Something I forgot but it didn't remotely apply to me.

The most likely answer is that it's a tumor (which didn't show up on the MRI) or I was born with it. What he wants to do is have me come back for another spine MRI in six months and see if there is any sign of the problem getting worse or any clue as to the existence of a tumor. From there, we'll decide if it's necessary to have an operation. Since the tremors and such I experience are annoying but not greatly effecting my life, he thinks that (unless a tumor shows up/it gets worse) I should just live with it. The spinal surgery is very risky, because the fluid is inside of my spine so they'd have to get into it without crippling me.

I'm fairly satisfied with the appointment. Afterward, my mom remembered that I had fallen off a horse once and asked about that. But when I fell, the stirrup had broke and I was leaning almost to the ground already before I let go of the galloping horse and fell all the way. I also don't remember if I landed on my shoulder or my back, and I don't remember feeling any pain. So I don't think that counts as a big fall. I also fell down the stairs once in Wakefield and hurt my tailbone pretty bad, but I wasn't seen about it and after a few days of soreness I was fine. So I don't think that counts as a dramatic fall either. I'd forgotten all about those incidents though, or I would have mentioned them.

I see my primary care doctor and Rheumatologist on the 19th, and I'm going to try to schedule my next appointment with my neurologist for the same day. Tomorrow I'm starting my short-term fix Rhuem. drugs.

Taming the Beast

2009-04-24T15:48:00.002-05:00

In my Rheum. appointment today, we discussed my inflammation levels. My doctor is putting me on a quick-fix drug that I'm supposed to take for like ten days, and hopefully it will calm down my inflammation for a few more weeks while we get ready for me to go onto some of the more serious medications.

I've sort of got information overload at the moment. I am still trying to process everything we talked about.

We talked about whether or not I wanted to go step-by-step with the drugs or if I'd like to hit it hard and fast with everything. I said hard and fast, because then if I react badly I'll still be at home and within an easy distance from my specialist. In July, I'm moving out of state to Berry College. I figured if I get used to whatever the side effects the month before I leave, and then maybe it won't be so hard of a transition when I'm there.

We're talking about me going on Methotrexate and Humira while continuing with Plaquenil. There are a ton of side effects to these medicines... but if I could knock it out, I could be over with this stuff in a few years. Not that that's a garentee... but I think it's worth it. It's also definitely better to do it now than wait until I am married/am thinking about getting married later in my twenties. I'm sort of nervous about Humira simply because it's a shot... but the alternative is something like an insulin pump that I'd have to go to the doctor's every couple of weeks to have refilled, so really there isn't an option.

I have to talk to my main doctor about another perscription I need as a protection while taking these drugs, and I have to talk to my spinal person about the effects Humira could have on my spine. I have my appointment with the spine person on Wednesday, and then I'm seeing my Rheumatologist and main doctor and Nuerologist all in late May.

I'm sort of overwhelmed, but trying not to be. I'm just trying to trust that God will keep me safe, and that I'll survive working through college with all this junk going on.

Neurologist's Call

2009-04-20T15:31:00.003-05:00

My neurologist called today to get back to me about the MRI. He said that my brain is unremarkable - however, there is an unusual fluid on my spine. He mentioned Syrinx, which is a fluid-filled cavity within the spinal cord. The symptoms seem to be consistent with my symptoms. I am getting a referral to see a spinal specialist out of town. I'm supposed to contact the neurologist if my symptoms change or get worse. After I see the spine person, I'm supposed to go back to the neurologist to discuss what might be going on and how to treat it.

I am also waiting for a call from my Rheumatologist. For the last two weeks, my hands have been severely inflamed to the point where I can barely grasp anything. My middle right finger has started hurting even when I'm not doing anything - like little electrocutions from the lower joint in the finger. So I called him today to ask for a phone consult. I figured I can tell him what's going on and hear the results of my last batch of bloodwork and x-rays, and then I'll see if I need to come in again or not.

MRI Results

2009-04-16T17:09:00.001-05:00

So, I had my MRI about a week ago. The first and longest session was the hardest. It was about an hour long, extremely hot and my stomach was upset. But all in all, it went okay.

I finally heard something about my MRI results today. I've been playing phone tag with the doctor for a while. I was out of town for the last week, and he's on leave this week. The nurse called to say she had looked over the report, and from what she could see my brain was "unremarkable," which is a good thing. :) When the real doctor gets back, he's going to review it all and then contact us to see whether or not we need to go back again.

So... that's a good thing.

Progression of RA

2009-03-30T22:29:00.002-05:00

Went to see my Rheum. today. This is the first time I've seen him in the afternoon, which I think is a good thing. I described my problems, and he had me fill out a little sheet about how difficult things are. After giving me the normal physical look-over, he sat down and said that he thinks my symptoms are getting worse. He is seriously thinking about putting me on Methotrexate.

I guess I was sort of starting to hope I wouldn't get worse, because I am a little stunned. Well, stunned isn't the right word... maybe anxious or numb...

I have to go back for x-rays and bloodwork tomorrow. Then we'll have a better idea.

My 3 hour long MRI is on Friday.

Last Physical Therapy

2009-03-21T21:26:00.001-05:00

I had my last physical therapy appointment for a while last Thursday.

He popped my hip back in joint and gave me a few pointers, then let me on my way.

Have an appointment with the Rheum. on Monday... We'll see how that goes. I think this might be my routine gallons of blood and tons of x-rays appointment.

Muscle Testing

2009-03-12T12:07:00.006-05:00

I have my muscle/nerve test thing this morning. I had pretty much no idea what I was in for. This turned out to be a good thing.

If You Expect To Take This Test In The Near Future, Read This Paragraph And No More:
To those that are going to take this test, just believe the nurse. It doesn't last forever. The shock part is not necessarily that painful. The needle part is not much worse than getting blood drawn.

If You Think You'll Never Take This Test:
This was the most painful medical procedure I've experienced in my life. Giving blood and getting your wisdom teeth pulled is nothing in comparison.

The first half is electrocution. The nurse sticks metal circles all over your leg and foot and then shocks you a lot. Some of them are not hard, and they don't really hurt. But every now and then she gives you a good bolt of lightning in your leg, and that hurts pretty bad. However, it's true that it doesn't last forever. If you grit your teeth and squeeze your eyes shut, you might get through it with just a few whimpers.

The second half is getting a needle poked in your leg. Not so bad, right? I mean, I've given gallons of blood to doctors. I've learned to conquer my fear of needles. But this is no ordinary needle. I'm not sure if it was a camera needle (my mom says not) or if he was just poking it around. But this needle moves. And it keeps poking deep into your muscles with an excruciating level of agony.

If you have read Lord of the Rings: The Fellowship of the Ring, you know that Frodo lived for a few chapters with a bit of the Ringwraith's sword tip making its way to his heart. I think the Ringwraith consulted this needle when his sword was made, because this pain is pretty much just like that.

You know the people who said this wasn't any worse than getting bloodwork done? They lied.

I bit my lip very hard, sweated, and squeezed my arms tight. I started crying a few tears of pain about midway through. The doctor stopped for a few minutes to get me tissues and let me calm down (I was on the verge of bursting into sobs, but I managed to swallow it). He asked me if I wanted to stop and I said I was fine. I did a little better through the rest of it. The last poke was in my hip, which hurt pretty bad.

In the end, I managed not to totally melt down and I limped out. I had to go get my bloodwork that the doctors wasted yesterday done again. The nurse lectured me about proper handling of a post-bloodwork arm after I asked her not to take blood from my bruised and drained arm from yesterday. I sort of wanted to say, "Bite me, please." But she wasn't being mean, she just didn't know my Experience in Bloodwork or that I had just undergone torture.

Now I am very tired.

The Neurologist

2009-03-11T16:30:00.004-05:00

I saw the neurologist today. He was good--pretty quick and not very talkative. He had me describe my symptoms, and then made me preform a few tests ("Touch your nose, touch my hand..."). He tested my reflexes, which I know are abnormal. I nearly kicked the last person [who tested me] in the gut.

My endocrinologist (do you capitalize their titles? Probably not) had ordered a ton of bloodwork before I saw this doctor, to help him along. I think they all came back normal. He said that because she had ordered so much, he'd just order one or two. He also wanted me to go to Radiology and schedule a MRI. Oh, and he wanted me to see the adult neurologist and have him preform some sort of muscle test involving needles. I made that appointment for first thing tomorrow... I just want to get it over before I start worrying.

When I got to the lab, the nurse started printing out all these labels. Apparently he had come up with more tests. In the end, I had 8 tubes taken. I could feel my vein about to pop... luckily it held, though I am bruising.

I got a call once I was home to schedule the MRI. It's at 6:30AM on April 3rd. GAG. It's also three hours long, because they're doing my brain and my entire spine. So much fun.

I'm not really sure what he's looking for or what could be wrong, since he did not talk much. But I assume that's because there's a wide range of things that could be going on, so he'd just be shooting at air anyway.

Physical Therapy and Another Doctor

2009-02-26T12:24:00.002-06:00

Physical Therapy

I started Physical Therapy about a month ago. The first time was pretty cool--he had me do some stretches, and he found out that my hip was out of joint. So one of my legs was short than the other one. He popped it back into place, gave me some instructions, and sent me on my way. The last time I saw him, he was pleased with how things have gone. I see him again in a few weeks, and that should be my last time. It has really helped my hip pain, though I still hurt sometimes. I've also started sitting on a heating pad ten minutes before bedtime, which seems to help.

Another Doctor

Today I saw my Endocrinologist for a thyroid follow-up. It went well: My thyroid is almost perfect. I mentioned to her some tremors I've experienced in my leg. She's referring me to a neurologist. So we'll see how that does. Seven doctors! Yay. Eh.

My Rheumatology Appointment

2009-01-21T12:11:00.002-06:00

I saw my Rheum. specialist today. I think the appointment went well over all - I really like this doctor.

I mentioned to him that the pain in my hands has spread to my palms, so that if I press my palms against something it will hurt. I also mentioned that I have noticed tremors in my legs, where I'll be doing something normal and my legs will start shaking badly. The day after my last tremor-leg-thing, I woke up feeling like someone had beat up my leg with a baseball bat. Even though it felt bruised, there wasn't any visible change. He said that for the palms, that was normal. But the tremors he's going to mention to my regular doctor - it's very likely not something RA related, so she might have some other ideas. (I'll probably also mention it to my thyroid doctor when I go next month.) If they think it's serious enough, they might refer me to another specialist to get checked out (that would seven doctors, I believe).

Anyway, he did the normal check-up stuff where he pushes on my hands and moves my legs around. All that went fine. I'd brought a list of questions, so I might as well just go down the list here.

Is pursuing acupuncture therapy a good idea? Would it be helpful? Can it be used in place of the medications?
The answer is yes - I could use acupuncture instead on Mobic, and it might do just as well/better. But it is not a cure-all. I will not be able to use it instead of one of the toxic/hard core Rheum. drugs. If my RA flares up, I have to take the real medicine, though I can still use acupuncture on the side to treat the pain/symptoms. (My thought is that if I go on medication that takes weeks to a month to start showing signs that it's working, I could do the acupuncture so I don't have to take Mobic or something while I'm waiting for the tough drugs to kick in.) It's our decision though. I think the nearest specialist is about an hour away, and I'd have to go once or twice a week, and I highly doubt the military will cover the expenses.

What medications can I take in conjunction with my medicines (i.e. mobic + methotrexate etc)?
Yes, if the pain is extreme. But we want to keep medication to a minimal. (My doctor calls my medicine "poison.") I'm all about minimal drugs, so that's fine with me.

I want to get treated for the hip problem/bursitis. What do I need to do to treat it?
I can get a steriod shot, but again we want to reduce the amount of drugs I'm on. I've been referred to physical therapy, so I'll start that up soon. After a month or so of doing that, I should stop having pain. I'm being taken off of Flexeril, because it doesn't seem to be helping anymore so there's no point in continuing to take it.

Are there nutritional treatments for RA/RA symptoms? Should I avoid certain foods? Do some foods help reduce inflammation?
No. Unfortunately, there are no foods to avoid or focus on for RA.

I got some bloodwork done, and in a few days we're going to call in to make my next appointment, see how the bloodwork looked, and sign up for physical therapy. I should be hearing from my regular doctor about the leg tremors and what she wants to do, but if I don't I can always mention it to my thyroid doctor next month. I also want to make an appointment with my tummy doctor to discuss the weird cramps and such, but before that I really need to get in the habit of doing all my fiber pills and stomach medicine regularly. (Ech. Not fun, I tell you - though I will say, taking the stomach medicine in Root Beer works wonders. I can't even taste it anymore.)

Medications

2009-01-20T16:26:00.007-06:00

Follow are the medications I have to decide about, with condensed information about them.

Sulfasalazine

It is not a pain killer.
Sulfasalazine has been found to reverse the scarring associated with cirrhosis of the liver
According to the findings of a case series published in BMC Musculoskeletal Disorders, the use of sulfasalazine in the treatment of inflammatory arthritis can result in serious hepatotoxicity (chemical-driven liver damage) - an adverse effect which appears to be ‘under-appreciated’ in practice.
The use of sulfasalazine has declined due mainly to the fact that it yields the metabolite sulfapyridine which gives rise to side-effects such as agranulocytosis (an acute condition involving a severe and dangerous leukopenia (a decrease in the number of circulating white blood cells (leukocytes) in the blood) particularly of neutrophils (a hematological disorder characterized by an abnormally low number of a type of white blood cell called a neutrophil) causing a neutropenia in the circulating blood) and hypospermia (a man problem).
Sulfasalazine, and its metabolite 5-ASA, are poorly absorbed. Its main mode of action is therefore believed to be inside the intestine.
When treatment for arthritis is successful, pain, joint swelling and stiffness will be reduced and this may slow down or stop the development of joint damage.
Because sulfasalazine and its metabolite 5-ASA are poorly absorbed into the bloodstream, it is surprising that the drug is effective against symptoms outside of the intestine. One possible explanation is that, given that ulcerative colitis produces arthritic symptoms, it is possible that, in some cases, the arthritic symptoms are actually a product of unrecognized ulcerative colitis, which is effectively treated with sulfazalazine.
The other metabolite, sulfapyridine, is absorbed into the blood
It is a pill.

Side effects

Nausea (controlled by a reduction in dose)
Occasionally mouth ulcers, a sore mouth or loose bowel motions may occur. Certain patients may develop a headache or slight dizziness but adjusting the dosage may bring things under control.
A rash may develop which may be itchy, but usually resolves quite quickly once the drug is stopped. Sulfasalazine can in rare cases cause a drop in the numbers of white blood cells which are needed to fight infection. If the blood count is monitored closely, it is unusual for this to be serious. Sulfasalazine can decrease the numbers of platelets, cells which help to stop bleeding, but again it is rare for this to actually cause problems. If however you develop a sore mouth, mouth ulcers, easy bruising, nosebleeds or bleeding gums, your doctor should be notified immediately.
The other potential problem is that sulfasalazine can cause a type of hepatitis (liver inflammation)
Sulfasalazine always causes some orange discolouration of the urine and your perspiration may be a little orange-tinged.
Temporary infertility may also occur in women
Myelosuppression (Bone marrow suppression) has been reported

Methotrexate

It is an antimetabolite (a chemical with a similar structure to a substance required for normal biochemical reactions, yet different enough to interfere with the normal functions of cells) and antifolate (The antifolate methotrexate is a drug often used to treat cancer because it inhibits the production of the active form of THF from the inactive dihydrofolate (DHF). Unfortunately, methotrexate can be toxic, producing side effects such as inflammation in the digestive tract that make it difficult to eat normally) drug used in treatment of cancer and autoimmune diseases.
It acts by inhibiting the metabolism of folic acid.
Methotrexate competitively and reversibly inhibits dihydrofolate reductase (DHFR), an enzyme that participates in the tetrahydrofolate synthesis.
It can be taken as a pill or a shot.

Side Effects

Miscarriage (while using drug)
Anemia (weakness, fatigue, paleness)
Neutropenia (a hematological disorder characterized by an abnormally low number of a type of white blood cell called a neutrophil)
Increased risk of bruising
Nausea and vomiting
Dermatitis (inflammation of the skin)
Diarrhea.
A small percentage of patients develop hepatitis (implies injury to the liver characterized by the presence of inflammatory cells in the tissue of the organ)
There is an increased risk of pulmonary fibrosis (refers to a group of lung diseases affecting the interstitium of the lung).
There is a risk of a severe adverse reaction if penicillin is prescribed alongside methotrexate. There have also been some reports of central nervous system reactions to methotrexate especially when given via the intrathecal route which include myelopathies and leucoencephalopathies
There have been reports of exacerbation of depressive illness with methotrexate.

Humira

HUMIRA is a medicine called a TNF blocker, that is a type of protein that blocks the action of a substance your body makes called TNF- . TNF- is made by your body's immune system. People with Rheumatoid Arthritis have too much of it in their bodies. The extra TNF- in your body can attack normal healthy body tissues and cause inflammation especially in the tissues in your bones, cartilage, and joints. HUMIRA helps reduce the signs and symptoms of Rheumatoid Arthritis (such as pain and swollen joints) and may help prevent further damage to your bones and joints.
Clinical trials on HUMIRA have indicated that many people using HUMIRA experience relief from the signs and symptoms of RA (such as pain, swollen joints and tiredness) as early as 1-2 weeks. Importantly, TNF blockers may also help prevent damage to your bones and joints. This is important because, once bone and joint damage from Rheumatoid Arthritis happens, it is permanent. Joint damage also plays a big part in how you will feel in the future. As with all medicines, HUMIRA will work better for some people than for others.
It is a shot.

Side effects:

Serious side effects, which sometimes lead to death, have happened in patients taking HUMIRA.
Serious infections. These infections include TB (tuberculosis) and infections caused by viruses, fungi, or bacteria. Your doctor will examine you for TB and perform a test to see if you have TB. If your doctor feels that you are at risk for TB, you may be treated with medicine for TB before you begin treatment with HUMIRA and during treatment with HUMIRA. Even if your TB test is negative your doctor should carefully monitor you for TB infections while you are taking HUMIRA. Patients who had a negative TB skin test before receiving HUMIRA have developed active TB. Tell your doctor if you have any of the following symptoms while taking or after taking HUMIRA: cough, low-grade fever, weight loss, or loss of body fat and muscle.
Certain types of cancer. There have been cases of certain kinds of cancer in patients taking HUMIRA or other TNF blockers. Patients with RA, especially more serious RA, may have a higher chance for getting a kind of cancer called lymphoma. Some patients receiving HUMIRA have developed types of cancer called non-melanoma skin cancer (basal cell cancer and squamous cell cancer of the skin), which are generally not life threatening if treated. Tell your doctor if you have a bump or open sore that doesn’t heal.
Allergic reactions. Signs of a serious allergic reaction include skin rash, a swollen face, or trouble breathing.
Hepatitis B virus reactivation in patients that carry the virus in their blood. Tell your doctor if you have any of the following symptoms: feel unwell, poor appetite, fatigue, fever, rash or joint pain.
Nervous system problems. Signs and symptoms include: numbness or tingling, problems with your vision, weakness in your arms or legs, and dizziness.
Blood problems. Symptoms include a fever that does not go away, bruising or bleeding very easily, or looking very pale.
New heart failure or worsening heart failure you already have. Symptoms include shortness of breath or swelling of your ankles or feet, or sudden weight gain.
Immune reactions including a lupus-like syndrome. Symptoms include chest discomfort or pain that does not go away, shortness of breath, joint pain, or rash on your cheeks or arms that gets worse in the sun.
Common side effects of HUMIRA are: injection site reactions (redness, rash, swelling, itching or bruising), upper respiratory infections (sinus infections), headaches, rash and nausea.

Rheumatoid Arthritis

2009-01-10T17:03:00.003-06:00

High time I post what happened at my last Rheum. appointment.

According to my bloodwork and symptoms, my doctor thinks that I likely have Rheumatoid Arthritis. He said to totally forget Fibromyalgia had ever been mentioned, because the doctor who diagnosed it didn't have his cap on straight and according to the studies he's done on me I don't have it. He also mentioned that I could possibly be experiencing a freak growth spurt that some girls go through from 18-25, where it looks like they have a Rheum. disease, but then it goes away. However, I still need to look at treatments.

He said that I probably have bursitis in my hip, which is why I have hip pain. I think this is cured through shot injections (*shudder*) but I'm not sure.

I've researched several of the different options for RA medication, and I'm planning on posting them here soon. I see him again in two weeks or so.

abdominal pain

2009-01-07T12:25:00.002-06:00

Thought I might as well record the symptoms while I'm pulling through one of the phases.

Nearly at random, but often when I am hungry or at/around 11:00 in the morning, I feel severe lower abdominal pain. This has been known to happen routinely at days at a time, or sometimes it will go away for weeks or a month and then start again at random. When it first began, it started when I was going to eat breakfast. I would lie down in a stretch position I learned in ballet and read to distract myself. It lasted for two hours, and then faded away. This happened three times in a row.

I used to describe it as feeling like two hands were pulling apart my insides. But it is more accurate to say it feels like someone is taking a spoon and scraping out my insides. It's like when you are emptying a pumpkin of all the guts at the bottom with a dull spoon, and you have to scrape and scrape the hard edges to get out that last bit.

These pains do not seem to follow any sort of monthly pattern. They just seem to come at random.

I'm not sure if it's in my head or not. Several times it got so severe I felt like I was going to die, so I told someone. Within ten or twenty minutes, the pain dissipated and I was fine. However, I have had instances where telling someone didn't help.

Now I commonly only feel the pain for a period of about 20 minutes before it fades off. The stretch position I thought was working doesn't work any more.

I don't know if it's something related to whatever Rheum. thing is going on, or if it's something new, or if I'm just blowing it out of proportion in my head. I've mentioned it to several doctors, but I think they attribute it to womanly things. This is partially my fault, because I have been calling it cramps. The truth is, I've never felt this sort of "cramp" before, and never had this problem until after all my Rheum. stuff came up.

I probably should go see my stomach doctor again.

Symptoms

2008-11-19T22:22:00.003-06:00

(I really need to update about my follow-up and other stuff. But for tonight I'm just going to post this.)

Symptoms/Timeline

2002 (12 years of age):

Weight loss, Extreme fatigue, Insomnia

2003 - 2007 (13-17 years of age):

Blue feet and hands (Raynaud’s), Fatigue, Dry eye begins, Rash after showering, sometimes after being in the sun, Intestinal troubles begin, Insomnia

2007:

Develops small red spots (like tiny broken capillaries) on arms, look like tiny freckles but they bleed.
Raynauds becomes more severe – begins to have toenail issues
Develops a shaking/tremor in her arms/hands especially when inflamed or under stress.

February 2008:

Thumb on left hand began to hurt. By mid-February thumb causing extreme pain and swelling in “flare ups” came and went. Insomnia more pronounced because of waking up during the night in pain.

Develops night sweats.

March 2008:

Left hand gets progressively worse, involving all the other fingers of the hand, loses ability to use the hand because of pain, swelling, inflammation. Worse in the morning, somewhat better in afternoon.

Right hand begins to hurt. Raynauds is extremely severe. Begins to lose toe nail on right foot.

Shaking/tremor is more frequent and more pronounced.

Sees PCM, has initial blood work, referred to Ped. Rheum.

April 2008:

Begins to develop hip pain.

See Rheum. ANA, CCP, RF, and antithyroid peroxidase are abnormal. Put on Mobic 7.5 twice per day. Referred to Endo for thyroid, Opthomology for dry eye.

May 2008-Aug 2008:

Seen by Endocrinologist, put on Synthroid.

Pain levels are increasing. Severe flare ups each month. Referred to Cardiology for chest pains and shortness of breath. Diagnosed with ectopic palpitations, innocent heart murmur, and possible rheum. inflammation of the chest.

Losses ability to hold small object, open jars/bottles, brush teeth. Pain and inflammation cycle – good days and bad days.

August 2008:

See Rheum. again. He adds a diagnosis of Fibromyalgia. Prescribes Flexeril at night for the Fibro, Plaquenil daily for the rheum issue.

Develops pain in right jaw.

Right toenail continues to worse, left toenail develops black pits/holes (due to the Raynauds?)

Referred to Gastro for intestinal issues.

September 2008:

Late August/Early September brought a severe flare up which lasted more than 6 weeks. Pain and inflamation levels were high and constant.

Mom notices a rash or “blush” on Alyssa’s face. Cheeks, nose, and part of forehead red. Rash/blush seems to come and go, some days none at all, some days very evident.

Symptoms as follows:

Raynaud’s (blue feet and occasionally hands)
Fatigue
Dry eye
Pain and swelling in hands
Pain in jaw
Pain in hip
Pain in feet (occasionally)
Rash after shower
Capillary rash
Insomnia
Intestinal
Dizziness
Shaking/tremor
Night sweats
Some back (kidney?) pain
Rash/redness on face

My New Rheumatologist

2008-10-24T15:46:00.002-05:00

Today I had the long awaited appointment with my new Rheumatologist.

It went well. I mean "well" as in I like my new doctor much better than the old one. He was ready for us as soon as we were checked in. We had made another list and timeline of my symptoms, but he had me tell everything to him rather than just read it. I did pretty well speaking up and talking without Mom. (She was with me, of course.) Anyway, we discussed a lot of things for a while and he took good notes. Near the end of the appointment he did a physical check.

During the appointment, as I talked about being diagnosed with Fibromyalgia, he sort of looked at me funny and went, "Hmmm." After asking exactly what my old doctor had done and said, and listening to the rest of the story, he told me that he is hesitant to agree with my other Rheumatologist's diagnosis. Apparently the pressure-point test he did was outdated, and really doesn't work. Rather, it does work, but it works on normal people as well as Fibromyalgia patients. Furthermore, some of my symptoms point away from Fibromyalgia and more towards Rheumatoid Arthritis (or something else all together).

My doctor was also sort of confused as to why my first doctor had me taking Plaquenil. (Which, according to my eye doctor and stomach doctor, can hurt the eyes and gut.) Because we don't know what is going on, we don't know what we're treating with Plaquenil, so it doesn't make sense. He recommended that I stop taking it, because it might help if I end up being diagnosed with Sjögren’s Syndrome or Rheumatoid Arthritis, but it won't do anything for Fibromyalgia or other conditions. Mom and I thought it was probably good to stop taking it, because frankly the if I can get by without a medication I really don't need the unnecessary pills on top of the handful I am required to take daily.

The doctor was really, really considerate and good at listening and explaining. He threw out a few possibilities, but really we're starting all over at step one again. It could be that my thyroid is to blame. When my old doctor talked about that, it made me really frustrated and mad because my thyroid isn't out of control. But my new doctor explained that Raynaud's Syndrome (blue hands and feet) can be caused by the thyroid, and other joint pains can come into it too. Because he actually explained the reasons to throw that out as a possibility, it didn't bother me so much. Also, it's possible that my symptoms are something seasonal, and that in a couple of years they'll melt away. Or I could have Sjögren’s. or I could have Rheumatoid Arthritis, or Lupus, or whatever. His point was that we really can't say, and he doesn't want to label me with something and then have it be the wrong thing. Which is exactly what I want to hear.

He really seems committed to the Mystery Diagnoses factor--meaning he's willing to work with me until we come to some sort of conclusion. He ordered a ton of bloodwork, and a lot of x-rays (vs. the three x-rays my old doctor did--which we aren't even sure he looked at). We're supposed to call him on Monday and schedule a follow up in three to four weeks (vs. sometime in six months that my old doctor felt like I should be seen).

Anyway, it was overall very encouraging.

Except they did take a ton of blood. By the time I got out of radiology, I was beat. I've just gotten home (four hours after we left the hospital) and basically just had enough energy to climb into PJs and curl up on the couch.

I have an appointment with my normal doctor on Wednesday for some minor things.

I did find this pretty cool little symptom checker last night, which is oddly fun to play with.

If I say, 'I will forget my complaint, I will change my expression, and smile,' I still dread all my sufferings...
Job 9:27-28

Follow-Ups and Referral

2008-10-21T22:18:00.002-05:00

Yesterday I had a follow-up appointment with my tummy doctor. It turns out that whatever is going on in the tummy area is more serious than he thought at first. After some discussion, I decided to opt with another couple of weeks with natural treatments instead of jumping into some uncomfortable testing. I have several vitamins and other health pills to take (on top of the medication I'm already on--not that these will hurt, because it's really just fiber and other natural things, it's just a hassle). I'm supposed to try these new pills for a couple of weeks, and then we'll go from there.

I saw my eye doctor on the same day. Everything appears to be going fine, with no damage to my cornea despite dry eye and the autoimmune medicine I'm taking (which apparently can harm your eyes, in rare cases). We mentioned that we were waiting to get a referral to see the Rheumatologist. (Now that I'm eighteen, I can be seen by the one that's local.) My doctor was like, "Oh, I'll just put that in for you." We were like, "Wow, thanks!"

So I have an appointment with Rheumatology on Friday. It's sort of sad how easy that was.

I also have an appointment with my normal doctor sometime soon, but I've forgotten when.

The Butterfly Rash

2008-09-25T13:08:00.002-05:00

I've started noticing that I feel really hot sometimes--when embarrassed, and at random. I assumed I would just flush for no reason. But a few weeks ago I got upset about something, and my mom remarked that I was too red. (Getting red in response to emotion happens to me a lot.)

Finally, today in Spanish I had to answer a few questions. I wasn't confident, and could feel myself blushing again. When I got home, I was washing my hands and happened to look in the mirror. The traces of the blush were still there (several hours later).

Then I noticed the shape of the blush. I recognized the Butterfly Flush/Rash.

This rash is a clear symptom of Lupus. Now that I can see it, I've realized I've had it for a while--when I put on foundation, I often note the edges of it, which are the reddest.

So... looks like I have Lupus.

Tummy Doctor

2008-09-24T10:01:00.002-05:00

(Sept. 2)

I saw the tummy doctor a few days ago and have more medicine to take. Apparently whatever autoimmune attack started my thyroid and Rheumatoid issues has effected my stomach region, and the doctor wants to check me out, make sure there wasn't permanent damage and whatnot. It's sort of interesting that I've told numerous doctors about my stomach problems, and my thyroid doctor was the first to actually recommend me to a tummy doctor, and now he's one of my regulars.

In Which I Add Another Doctor To the List

2008-09-22T20:31:00.000-05:00

(August 18, 2008)

Today I saw Dr. C, my thyroid doctor. She was very sympathetic about my Saga Of Finding A Good Rheumatologist. While she was going through the checklist of things to ask me, I told her about my constant nausea in the mornings. (I quit trying to eat breakfast years and years ago, because it made me sick feeling and miserable. I can still manage to eat before eleven o'clock if I need to (i.e. at camp or before an important test) but most of the times that is Not A Good Idea.) I think I've told this to several of my doctors, but this time she stopped and frowned at me. I've now been recommended to see a tummy doctor next week. That's--what?--5 doctors now? Rheumatologist, heart doctor, thyroid doctor, normal doctor, eye doctor, tummy doctor. Six doctors! Score! Erm... or something.

Otherwise the appointment went fine, and everything seems to be okay from the thyroid point of view.

in which one side of my heart throws a party and the other side watches with disgust

2008-09-19T09:36:00.000-05:00

(August 4)

I saw the heart doctor today. May I say it is amazing that they can look at a bunch of numbers and tell me right off what's going on? Apparently my heart monitor would alert the doctor even when I hadn't pressed anything, just if something weird was going on. So actually she did catch one of my palpations--just not one I felt.

Apparently my palpations are perfectly normal. What happens (as I understand it) is that the side of my heart which keeps the beat is on the top-left. However, from time to time the top-right of my heart decides to throw a party and speeds up, taking over the thump-thump. Then that side gets sick of the party and throws responsibility back on the other side. And life goes on. Nothing harmful or dangerous about it.

We also talked about my chest pains (which have gotten so bad at times that I've almost cried). When I have an "attack," it feels like my ribs are squeezing in and digging into my lungs very slowly. The worst it got was when it had been aching badly most of the day and I ran across the street. When I got to the other side, I couldn't breathe and was in a lot of pain. My doctor says this isn't related to my heart, though. She thinks it could be that I have Fibromyalgia or arthritis in my ribs, so that it hurts for my ribs to move when I breathe deeply. She thinks that the new medication I'm on will help.

She also told me some of the signs that I should be looking for, and encouraged me to call her if anything comes up.

So that's covered and over, for now at least.

A Fellow Named Fibromyalgia

2008-09-18T16:47:00.000-05:00

(August 1)

Today I went to my old Rheumatologist. He will still see me, and goes as far to as to say he's willing to keep seeing me until I'm twenty one or something like that (we're going to switch to the adult one though). Why the other doctor can't do this, I don't know. Oh well.

Anyway. I was seen by a student doctor first, and I liked her much better than my last one. She was thorough, interested and listened to everything I had to say. We also joked a bit. It was much easier to say everything I wanted to when I wasn't being interrupted or stared at. She then got the main doctor, and he brought in a hoard of other student doctors to sit in on the rest of the appointment (which feels very awkward). It was sort of the same story as last time--he asked me a few questions and cut me off before I'd answered them completely. Oh well. My student doctor cut in once to correct him, which made me like her even more.

After talking for a few minutes, he had me stand up and started feeling different points on my neck, arms, legs and hips. These are pressure points, apparently, and some of them were very painful when he squeezed. The result of this test is that he has decided I have Fibromyalgia.

Fibromyalgia
Fibromyalgia, also called muscular rheumatism, is when you are in a constant state of pain, stiffness and aching. It is not a form of arthritis, and will not cause deformities or permanent crippling (thank goodness!). Some symptoms (the ones I have) are pain (particularly in trigger points), fatigue, Raynauds Phenomenon (the Dead Feet that I have), dizziness, tingling and numbness, and abdominal issues.

He has prescribed muscle relaxants to take in the evening, so I can sleep without my hip hurting. He also prescribed medication that should slow down the rate my antibodies attack/eat me. I've also been told that I need to start exercising for a half hour to two hours everyday, or my muscles might start to freeze up. It's as important to my body to exercise as it is for a diabetic to take insulin.

There is something else Rheumatoid-ish going on. While my doctor was rattling off about my only issues being thyroid (which really isn't that bad--mine's much less than my mom's or older sister's) and Fibromyalgia the nurse interrupted and reminded him about my high Rheumatoid factor. (Fibromyalgia isn't Rheumatoid, btw. It's pressure points...or something. It's confusing.) Anyway. So then he back tracked and prescribed some medicine I've been taking to help fight whatever Rheumatoid thing is going on.

Rheumatologist Saga

2008-09-11T15:24:00.000-05:00

(July 16, 2008)

The new Rheumatoid doctor has apparently said he cannot see me. Since my eighteenth birthday is in three months, I am too close to being eighteen. However, the adult specialist won't see me because I'm still seventeen. The result is that, right now, I will probably have to wait until I am eighteen and whatever magically happens on that day happens. Which means in nine months I'll have only been able to be seen once by the doctor I most need to see. My parents are pretty frustrated, and intend to push for something when we get back. I'm rather resigned--I've waited this long that a couple more months of waiting doesn't seem awful, and I've stopped expecting to have a speedy diagnosis.

Endocrinologist and Heart Doctor

2008-09-08T23:09:00.000-05:00

(June 27, 2008)

On Monday, I had an appointment with the endocrinologist. It went well--she's very nice and active. I have thyroid medicine now, which I have been taking. On Tuesday, I saw the heart doctor. She was really good too: attentive and helpful, and she explained everything. I have an Innocent Murmur in my heart, which means a murmur that's very quiet and not dangerous. We got to do an ultrasound of my heart (which was really cool) and I got hooked up to the Doc Oct machine (not do cool). Nothing seemed to be the matter. But just in case, she ordered me a heart-thingie that I'll be wearing as often as possible for the next month. That way if I have a palpitation or black out or something we'll have it on record. It's suppose to be coming today.

Cutting Corners

2008-09-07T21:33:00.000-05:00

(June 2, 2008)

First: About four days ago we received the letter from my Rheumatoid Specialist. If anything, the letter proved he didn't look at me at all--he said my right hand was the one that had been hurting, though at the time it was only my left hand that was severe. He also referred to my bloodwork in 2004, when actually it was my bloodwork from this April. He didn't correctly catalogue how my feet turn purple--he said they turn color in the cold, but really it's any time when I am sitting down, i.e. not walking. We're not sure, by the letter, if he even looked at my X-Rays. However, he did discuss my blood results for the most recent tests. I don't have Sceroderma. He admits that my Raynaud's phenomena is probably related to an undetermined rheumatic disease (which is more than the nurse who called us said). He also thinks I may be in the early stages of Sjögren’s syndrome (I saw in the clinic today that people normally develop it between 25-40). He recommends I see an eye doctor, an endocrinologist (thyroid doctor, in my case) and come again in three or four months. (Sjögren’s can seriously damage the eyes through Dry Eye, which I've had for a while--this will also help determine what I have through special tests the eye doctor can do.)

Second: In an attempt to cut corners, my mom took me to one of Laura's diabetes check ups (with an endocrinologist). Her doctor (Dr. C, we'll say) will be mine for the thyroid problem, and my mom likes her a lot. I instantly liked her too, because as soon as Mom mentioned I was getting a referral and started explaining, Dr. C turned to her computer to pull up my records. She immediately put me in for an appointment at the next avaliable time (which isn't till the end of the month, because Dr. C is going out for the month of June ). So that's set up.

Today I went to the clinic again. My usual clinic doctor is out for the month, so I saw another doctor. We talked to him about the several referrals, including getting a new Rheumatoid doctor. He was very good--attentive and willing to listen to the questions and explain what he thought. Mom went through the list of questions we had made. I think there's only a couple things worth pointing out here.

A couple of times over the last month or so, I've had severe pain in my kidney area. It normally happens from eleven in the morning to about one o'clock. I'll be hungry, so I'll go to have cereal or something. (I usually don't eat in the morning because of stomach problems.) As soon as I look at the box and think about eating, I start to hurt. I don't eat, and try to walk around or stretch to stop the pain. Very quickly it becomes agony to walk around--but to sit is complete torture. I find the only semi-comfortable way to deal with is is to lie in a stretch position I learned in ballet three years ago, and read a book. (Movies/TV doesn't distract me enough.) It happens almost at random, and sometimes a couple of days at a time. I've noticed that when I am sitting or lying in bed, I can often feel a slight aching in the kidney area all the time. We mentioned this to the doctor, and I think (it's all sort of blurry now) that he said if something was seriously very wrong, we would be able to tell. And otherwise, it should show up in a small test. He had me do the test again (though I've done it every time I see a doctor over the past couple of months). So... We'll see if anything shows.

Also, a few days ago, something weird happened to my heart. I was in the car with Mom and Dad, going to have a meeting/talk at McDonald's (a fun occassion). My heart sort of throbbed very hard, skipped and then beat quickly and weakly for several minutes. It was one of those things that, when you're aware of it, you go, "Oh, you know, this has happened a lot before--and I bet it isn't something completely normal. I ought to mention it." I also remembered that before I gave up riding my bike, whenever I did I would have blackouts. I would suddenly feel lightheaded and nauseous, and my vision would be covered my blotches. Eventually everything would go black, if I didn't stop to rest. Normally I would stop and sit down (I couldn't stand) for a few minutes. I remember once than my dad helped me up and onto my bike again, and had to catch me because I nearly fell over. I always thought I was going to faint, but I never did. I gave up riding my bike almost completely after that time. This, too, I thought worth mentioning. So, I did. The doctor listened thoroughly to my heart for a few minutes, then sent in a nurse to do a test on me. She had me hooked up to this big octopus of a machine (I felt rather like Frankenstein or Doc Oct) and the machine recorded my heartbeats. (I forget what it's actually called.) Nothing showed up, but my mom says nothing normally does--my grandpa had a heart attack once and they didn't believe him because it didn't show up on the machine immediately. The doctor decided to refer me also to a heart doctor for some more tests and possibly an ultrasound (which would be ubber cool).

So now I have referrals to an eye doctor, an endocrinologist, a heart doctor, and a Rheumatoid Specialist.

Second Batch of Bloodwork

2008-09-06T09:17:00.001-05:00

(May 23 2008)

A little over a week ago my specialist doctor called with blood results. He has determined that I have Hashimoto Thyroiditis, with possibly something Rheumatoid on the side, or so severely that it's causing Rheumatoid symptoms. If this turns out to be the case, it is a good thing. HT is pretty easily treatable (my mom and older sister both have it, I believe) though like most Autoimmune problems it isn't curable. It's also likely I've had it for seven years (my mom actually took me in to get it tested and the bloodwork didn't show anything). Anyway, it causes fatigue and stuff, which the medicine clears up nicely.

However. My smart mommy wrote down all the numbers/test names to research for herself. From what she can tell (granted, she's a homeschooling mother, not a doctor) it appears I even though do have HT, it looks more likely that it's a high Rheumatoid problem with that in hand, rather than the other way around.

Meanwhile, we've been waiting for the paperwork to come through so I can see the Pediatrician (Thyroid doctor). She also works with Laura, and Mom trusts her and likes her ~~a lot more than my specialist~~. From there we're planning on making an appointment in my hometown, which is the other location a specialist is at. (Then again, at the rate things are going I'll probably be eighteen before my second appointment, and then I'll have to transfer to an adult specialist.) In order to get the ball rolling, Mom wanted to get together with my clinic doctor to get the referral. But my clinic doctor is going to be out the whole month of June and won't be able to see me before then. So I have an appointment with another doctor on the 2nd, where then I'll get my referral (hopefully!) and then see the Pediatrician and then maybe see my other specialist. (At least, this is my concept of The Plan--If the paper work comes in before the 2nd we'll probably just go straight to the Pediatrician.)

Meanwhile, I'm still taking pain medication to keep my hands in working order. Without them I would be in a ton of pain. (I'm in a little pain in the mornings even with the drugs.) So it's frustrating that this has gone on since February, and all the doctor stuff has gone on since April, and not much progress has been made.

First Appointment with My Rheumatologist

2008-09-03T17:20:00.002-05:00

(May 2, 2008)

So. Today I had my first appointment with a specialist.

I woke up around seven and got on the computer until we left an hour later. We arrived around 10:00, and waited for about an hour or so. I flipped through college brochures I'd gotten in the mail and read some of Return of the King.

When we finally got in, I was seen by a student doctor. He was pretty attentive and examined me thoroughly. However, he was obviously a bit nervous, and he did not write down everything. (A small rash I have on my arms and legs, my stomach problems, etc.) He bent my fingers, but since it was noon everything but my thumb was in working order. (The pain is at its worst in the morning--sometimes it's a stiffness in the joints and not even very painful--and wears out by midday until it gets as severe as my thumb.) I don't think I made it clear enough to him that my thumb had begun hurting in the same ways two months ago, so he thought nothing of my other fingers and didn't think much of my thumb. He left to go talk to the big doctor and relay everything he'd found to him.

The Main Doctor I didn't like very much. He came in, poked around for a few minutes, and didn't seem to think there was anything terribly wrong. While that may be true, I felt like he ignored half my issues or didn't spend enough time to explain why certain things didn't matter. He thinks I have Sjögren’s Syndrome, but we don't know for sure. It was such a rushed interview, he left again before I'd had half the time I needed to collect my thoughts and ask questions. It wasn't until I saw their backs going out the door that I realized, 1) They did not try to bend my thumb at the middle joint (which is what hurts the most, and which I can no longer bend without having to manually force it--very painfully--with my other hand), so they were not aware of that pain, and 2) The Main Doctor thought that I had broken/injured my thumb somehow instead of thinking it was a gradual process.

Then I had to get a ton bloodwork done, and my chest and hand ex-rayed. Apparently I don't get called back for an update unless something is wrong. "No news is good news!" as the nurse said. However, I find this extremely vexing. It could be a wait as long as two weeks, and even longer for the Main Doctor's letter saying what is going on. Which means, unless something shows up in my bloodwork, I will not progress any nearer treatment--even of my hand if they decide it isn't worth worrying about. Or, if it takes two weeks and they decide there is a reason for me to go back, it'll probably take even longer for me to get another appointment, meaning more time waiting.

At least I've got new pain medication. My old one didn't do much of anything for me, and my doctor said it was really old and outdated. The new stuff is working much better.

I am hoping that whatever is wrong will show up in my bloodwork. However, a lot of the problems tend to not show up, so if the doctor is only concerned with bloodwork there's a chance that I will be overlooked. This is Not Good, and not something we're going to stand for. If that happens, the plan is that we'll get my clinic doctor (who is very nice) to give another referral and go to the other hospital, where hopefully I'll receive more attention. (I wouldn't mind going there anyway.)

So, I'm pretty frustrated.

The Bloodwork

2008-09-02T11:13:00.002-05:00

(April 7, 2008)

Today we got most of the blood work back. I'm going to try to make this as easy to understand as possible...quite frankly I'm rather lost myself! I have a ton of windows and Google searches open, so as I read through those I'll probably comb through this and correct my mistakes.

We are almost positive that I have some form of rheumatoid arthritis.

What is rheumatoid, you ask? I'd like to know too!
Rheumatoid is apparently something "involving joints, soft tissues and allied conditions of connective tissues. In the term rheumatology, rheuma means 'that which flows as a river or stream' and 'ology' means the 'study of'".

This means more bloodwork and a specialist. Rheumatoid, according to this Wikipedia article, comes in many different packages. Fifteen different packages, to be exact. However, my doctor says I am most likely to have Sjögren’s Syndrome or something to do with Lupus or Scleroderma. (Since this time, Lupus and Scleroderma have been determined highly unlikely.)

Woah, wait. What the heck is Sjögren’s Syndrome?
Sjögren’s Syndrome attacks the moisture tissues such as tear and salivary glands. It can progress to the point of lunching on your liver and such, but I doubt that if I have this it is that serious.

Okay. Now. Speak very slowly: What is Lupus?
Lupus appears, among other variables, to like piggy-backing Sjögren’s Syndrome, ironically. Lupus is rather scary--it can cause kidney disease, depression, seizures, etc.etc. A lot of the symptoms sound familiar--arthritis-like pain in one or more joints, persistent fatigue; and hair loss.

Scleroderma sounds like throw up.
I know, I know. This is another scary one. One of the factors is Raynaud's phenomenon (or Syndrome), which we are certain I have. (More on Raynaud's Syndrome below.) It looks like I have a lot of these symptoms, too, but I'm not going to talk about them because it's a little frightening and somewhat gross. Besides which all this research is starting to make me very nervous, so I'm just going to skim the rest of it. Suffice to say that it's very possible I am at least in the early stages of this, and the worst that happens is I have heart/lung failure (among other things).

Raynaud's Syndrome
We are positive I have Raynaud's Syndrome. This is when your feet or hands turn cold, pale and blue in response to emotional uproar, heat or cold. I've had this for years. My feet are lovingly referred to as "dead people feet".

Along with all these possibilities is the chance of me having another autoimmune disease on top of it all. We're waiting for those results. (Hopefully they'll be in tomorrow.) Rheumatoid arthritis is an autoimmune disorder, by the way.

Autoimmune? Like, no electronics allowed?
Autoimmune diseases are when your immune system attacks and kills your own tissue, which means anything from tissue between the joints to your organs. Type 1 Diabetes (which my sister, Laura, has) is caused when your antibodies (the autoimmune released things that kill things) attack your pancreas.) Autoimmune diseases enjoy living with many people in my family.

Feeling educated? Feeling like your brain is going to explode? Me too!

The First Appointment

2008-09-01T19:44:00.000-05:00

(April 4, 2008)

We got to the doctor's, checked in, etc.etc. My doctor was very nice. She came in and had a brief look at me, then went to wash her hands. "I had a chocolate chip cookie to get me started this morning, but I heated it up so the chocolate melted all over my hands," she explained merrily. Mom and I laughed. I had made a list of everything I could think of that was wrong, and a basic time-line of everything. (Yes, I am a planner, and I like to be organized.) This she found very helpful. She thought it was really funny that I put stinky feet on the list. And Laura had written in my schedule: "May 30 - My brain explodes because of LOST." The nurse was frowning at it and I quickly told her it was my sister playing a joke. She laughed and said something like, "Weird family." We talked about some other things, and she looked me over, and agreed that something isn't right. Then I was sent off to the lab.

Since I hadn't eaten any breakfast (tummy+breakfast=not good) I was ready for blood work. My dad was in the building, and he came to sit with us while we waited. (It was kind of funny, because all the little Navy folks were like, "*glance at him**double take**jump up* Oh! You can sit here, captain!" And he was like, "Uhhh, no, I'll just stand in this corner, thanks.") Finally the time came for me to come in.

When the nurse pulled out ten vials for my blood, I started getting a little nervous.

Because of all the things I could possibly have, they needed to take a lot of blood. It's not that it hurts, you know, it's just all in your head and your body sorta freaks out. I gripped Mom's hand and tried to breathe deeply. My dad made jokes and stuff to try and calm me down, but that wasn't very helpful because I'd laugh and jiggle the needle. Somehow I survived, though by the end my hand was asleep from lack of blood and I was feeling rather light headed. I almost hyperventilated at one point. I really, really don't like blood, suffice to say.

I got a glimpse of the ten tubs full of blood and then very wisely decided not to look again.

Welcome

2008-08-28T15:23:00.003-05:00

My name is Alyssa, and I am seventeen years old.

In the early months of this year, I began to feel pain in my left hand thumb. Just stiffness at first, but after a few days it was almost impossible to bend it at all. This was in the middle of my most recent move, so I tried to brush it off and ignore it. During the day the pain would wear off, so by nightfall it barely hurt any more.

A few weeks later the pain spread to other fingers on my left hand. It became impossible to live with, particularly in the morning. To bend it made me feel like there were a thousand needles being injected up my thumb and into my arm. By the end of the month I could not use my thumb at all.

I grew worried as Advil didn't help and the pain got worse almost daily. By the time my mom and I wanted to see a doctor, family emergencies came piling in. We delayed seeing my doctor for almost another month. In April, I finally was able to go to the clinic. This is the recording of the events since that time, mostly for family and friends to follow.

But you know I know better
I'm not gonna worry 'bout nothing
Cause if the birds and the flowers survive
Then I'll make it okay
...
'Cause You knew how You'd save me
before I fell dead in the garden
And You knew this day
long before You made me out of dirt
...
And You know the plans that You have for me
And You can't plan the end and not plan the means
And so I suppose I just need some peace
Just to get me to sleep.
-Table For Two, Caedmon's Call