How Vaccinations Affect My Family

I've been reluctant to write about such a hot button topic, but it's also an issue that is extremely relevant to the members of this community. So I’m going to go ahead and discuss it: vaccinations.

Read more at RheumatoidArthritis.net.

Secret Post #20: SI Joint

NOTE: This post is part of a series that I wrote in secret during the months before I announced my pregnancy. The series chronicles my pregnancy journey: from weaning off my RA meds, to trying to conceive, to searching for helpful advice and information, to discovering I was pregnant, to the ups and downs of my first trimester. You can read all the posts in this series here.

 This Post Written November 16, 2011

Today I went to see my rheumatologist's assistant about the pain I have been having in my SI joint. Considering that I will be supporting considerably more weight in that section of my body over the next few months, having back pain during the first trimester is making me pretty nervous. Having it be associated with a joint is making me even more nervous.

But it turns out that RA doesn't usually affect the SI joint (usually). And though there are some other inflammatory diseases out there that do affect the SI joint (like AS: ankylosing spondylitis) apparently it's pretty rare for those to go hand in hand with RA. She said another option is OA in that joint (awesome), but that is also unlikely given my age. So this is a good thing - she said whatever is wrong with my SI joint it isn't likely to be caused by an inflammatory disease or OA.

She said it was more likely that the joint just got out of alignment and the muscles got mad. She prescribed some physical therapy, so I'm going to try that first. If that doesn't work then we are going to consider a short course of anti-inflammatories, as apparently there are a few that are considered safe at this stage of pregnancy (though of course we'll get my OB's approval if we go this route.)

Hopefully one or both of these plans will be enough to make the pain go away. If not, I'll have to suffer through it until the baby is born and it's safe to get some x-rays of the area. But, since the stretches I do every week with my pilates instructor actually do seem to help alleviate the pain (at least a little bit), I am optimistic that the physical therapy will be enough.

Even though my rheumatologist himself didn't have time for a full appointment with me today, he did pop his head in while I was with his assistant to say hi, see how I was doing, and offer his congratulations on my pregnancy. Also, my Arthritis Ambassador assignment this month was to ask my rheumatologist to join the Arthritis Providers and Researchers Advocacy Alliance and he told me today that he would join, which is very cool of him. His awesome nurse (who has helped me so much with insurance nightmares in the past) said congratulations too. The whole office is really excited for us, and that made me very happy. After all, these folks have been a big part of my life for the past three years. It's really, really nice to have their support.

In other news, I got a message today that the bloodwork from my first prenatal appointment came back. Everything looks good, except that my thyroid dosage needs to be increased a little bit. I'm actually really glad to hear that, because the increased dosage ought to help somewhat with the intense fatigue I have been experiencing.

In more different other news, I wonder if the nausea is finally starting to die down and if the cravings are starting to set in? Because I'm pretty sure I'd do anything for an In-N-Out burger right now. ~;o)

Does RA Run In The Family?

Scientifically speaking, genetics doesn't seem to be the sole cause of RA, though it may be a contributing factor. However, as an RA patient, I can tell you that the single most often asked question when people find out I have RA is "does anyone else in your family have it?"

Until recently, my answer had been limited to my mom's side of the family. My cousin KF (my first cousin - my mom's sister's daughter), who is a few years older than me, got diagnosed with RA a year or two before I did. She has been an amazing source of support for me since my diagnosis. She also told me that our Nana (our shared grandmother on my mom's side) probably also had RA. So that's two on my mom's side of the family. 

As for my dad's side of the family, I'm pretty sure I get my other autoimmune disease from them. I also have Hashimoto's thyroiditis, where the immune system gradually attacks and destroys the thyroid gland. (Interestingly, according to Wikipedia, it was the first disease ever to be recognized as an autoimmune disease. I feel I should get some sort of prize for having it!) I'm not certain whether my family members on my dad's side also have Hashimoto's or just more generalized hypothyroidism, but I know that my dad, my aunt, and my grandmother on that said all have/had thyroid issues.

However, I also recently found out that there is RA on my dad's side of the family as well. My cousin JD (my first cousin once removed - my dad's first cousin) contacted me because she was writing a paper about RA for one of her classes. She told me that her grandmother also had RA. Her grandmother was my great-great-aunt (JD's mom and my dad's mom were sisters). So, while it isn't a particularly close blood relation, it was still interesting to learn that RA had been identified on both sides of my family.

Basically, the family ties to RA are inconclusive. You can get RA even if no one in your family has or ever had RA. On the flip side of that, you can have a bunch of family members who have RA and not get RA (like plenty of my other family members). So, just because I have a history of RA on both sides doesn't mean it's something I would necessarily pass along to my kids. But, even though I'm not planning on having kids this instant (APL is at work - ha!) I have to admit, it does worry me. I would  really hate to be the "reason" for anyone having to go through this type of pain, especially my own baby.

UPDATE: Ok. Apparently trying to figure out family relationships hurts my head just like trying to figure out daylight savings time. (Someone should draw me a diagram!) My cousin JD just pointed out to me that I got the relationship wrong in this post. JD's mom and my dad's mom were sisters - and it was their mom who had RA - and that makes her my great grandmother (my dad's and JD's grandma). So my great grandmother on my dad's side also had RA, which is a closer connection than I originally thought.

Feeling Frustrated

We just got back from APL’s wonderful family reunion. About twenty members of APL’s family from all across the country got together at his parents’ property near Yosemite National Park. Not only is that part of California particularly beautiful, but we also had a lot of fun. We talked and played games and ate delicious candlelight dinners on the patio under the giant oak trees. One night we had a “Low- and No-Talent Show,” which had us all laughing until our sides ached. I had an amazing time and I am so grateful to be even a small part of such an amazing family. I’m already cherishing the pictures from that weekend.

Except for the pictures of me. I just don’t like looking at myself in pictures anymore. The twenty (ok, let’s not lie, thirty) extra pounds I gained on the prednisone just seem so obvious to me. Particularly in my face, but also in my middle. I’m absolutely not writing this to extract a string of comments telling me how skinny I am. I know I’m not obese. I know I look fine. Actually, it’s not really about how I look anyways. The extra weight makes me feel horrible. And seeing it in pictures makes me remember how horrible my body feels. I am so frustrated with my body that it literally makes me cry.

For the past year I think I have been fighting hard to not hate my body. There are so many things wrong with my body – my immune system, my joints, my blood pressure, my thyroid, my energy – it would be really easy to hate my body. I know the vast majority of these things are not my fault, but the potential solutions to some of these issues take a lot of patience to find, which hasn’t exactly been easy to maintain for such a long time.

Take, for example, my visit to the doctor yesterday: The last time I saw the doctor, she decided that the prednisone had elevated my blood pressure too much, so she gave me some drugs for hypertension. Yesterday I went to check in with the doctor about my blood pressure and also mentioned that I had a hacking cough for about a week. Turns out the cough was caused by the hypertension meds, which I was only taking because of the prednisone, which I was only taking because of the damn RA! So, although the prednisone helps with my pain, it also makes me gain weight, which gives me hypertension, which results in a hacking cough! Frustrating!

Finding the right combination of meds is a long and frustrating process. And I’ve tried so hard to be patient. For a year I have really been fighting to stay positive about my body and try to keep myself from hating my body. It really hasn’t been easy, especially on days when everything hurts so much I can’t help thinking about the pain while doing ordinary tasks.

I know this is going to sound horribly shallow, but seeing pictures of myself where I look as horrible as I feel makes it extremely difficult to stay positive about my body as a whole.

I know I can lose the weight. I know that this particular body flaw is not a permanent one. But the prospect of loosing the weight is also a quite overwhelming. Although I’d like to think I eat pretty healthy most of the time, the prednisone also makes me hungry, which leads to overeating I’m sure. And to lose weight I obviously need to exercise, but this can be an extremely daunting process when my body hurts or I feel fatigued. For example, while we were at the family reunion most everyone took a 4-mile hike from Glacier Point down into Yosemite Valley, but because my toes were cramping that day I was regulated to shuttle driver. How am I supposed to be active enough to loose 30 pounds if I can’t even take a walk?

I have reached a point where I am forced to admit: sometimes, I really hate my body.

Drowning in Doctors & Knee-High in Needles

I spend WAY too much time going to the doctor and getting stabbed with needles.

Last Friday I was at Student Health twice in the same day. I had to get blood drawn for a thyroid test. Luckily, it was my favorite lab man. He knows me pretty well seeing as I’ve been in his lab twice a month for the last year. He always makes me smile and it never hurts when he draws my blood. So I won’t say that experience was pleasant, but it wasn’t bad either.

Doctor Count: 1 visit/1 day.
Needle Count: 1 stab/1 day.

But then I went to the pharmacy to pick up three prescriptions, one of which I was going to run out over the weekend. I told the girl at the pharmacy that there should be two on the shelf and one in the fridge. She said yes and I paid a zillion dollars for my ENBREL and left. It wasn’t until I got home that I realized one of the prescriptions was missing. And, of course, it was the one I was going to run out of over the weekend. So I had to go all the way back to student health and pick it up.

Doctor Count: 2 visits/1 day.
Needle Count: 1 stab/1 day.

On Monday, I had an appointment with the travel nurse for my upcoming trip to China. What would have been a 15 minute appointment for most people turned into an hour and a half debate about what precautions would best protect my compromised immune system and what drugs could be given to me that wouldn’t react with my 15 other medications. (I’m not exaggerating about the 15). For example, I can’t take the oral typhoid vaccination because it is a live vaccine and my immune system can’t handle that. So I had to get the typhoid shot. I also got my first Japanese Encephalitis shot.

Doctor Count: 3 visits/4 days.
Needle Count: 3 stabs/4 days.

On Tuesday, APL drove me 40 miles each way to the University Hospital where I met with a doctor in the rheumatology clinic to get a second opinion about my treatment. I actually really like and trust my current rheumatologist, but several people (including my dad and my boss) have encouraged me to get a second opinion. Since it has been a full year since my diagnosis without huge amounts of improvement I guess a second opinion is valid at this point. The doctor was a very nice man. He went over the onset of my disease and my treatment plan up to this point and confirmed that he would have used the same methods of treatment. To be certain, he took x-rays of my hands and feet and had some blood work done. Annoyingly the lab technician drew my blood from the exact same spot on my right elbow as Student Health did on Friday. Although the hospital appointment went quite well, we hit hail and traffic on the way home. The whole expedition ended up taking over five hours.

Doctor Count: 4 visits/5 days.
Needle Count: 4 stabs/5 days.

Today I went in to see my regular doctor to find out the results of my thyroid test and to answer some of the questions that the travel nurse couldn’t answer. My thyroid is normal and the doctor thought of another drug I could take in case I get sick in China that wouldn’t conflict with my other 15 prescriptions. So that was good. However, the doctor then got very concerned about my high blood pressure. For one thing, I have what they call “white coat hypertension,” which means I get nervous when I go into the doctor’s office and the first time they take my blood pressure it is almost always high. Usually they take it a second time and it comes down again.

But today I guess it didn’t come down enough, and the doctor started looking through my history and determined that my blood pressure had a general trend of being too high. So I went off to the lab again to get still more blood work. Sadly, my favorite lab man wasn’t there and the girl who took my blood took it from the exact same spot as Tuesday and Friday. I now have a bruise on my arm large enough to look like I abuse drugs. I also had to give a urine sample and pick up a prescription of blood pressure medication. The doctor wanted to start me on it right away so she could see how I respond before I leave for China.

Doctor Count: 5 visits/6 days.
Needle Count: 5 stabs/6 days.

Tomorrow, it is time to stab myself with another ENBREL dose.

Doctor Count: 5 visits/7 days.
Needle Count: 6 stabs/7 days.

On Monday we are leaving to drive to California to go to APL’s 4th of July family reunion. I am really looking forward to the trip. However, before we can even leave town I have to go back to Student Health for my second Japanese Encephalitis shot.

Doctor Count: 6 visits/11 days.
Needle Count: 6 stabs/11 days.

Next Thursday it will be time for yet another ENBREL stab.

Doctor Count: 6 visits/14 days.
Needle Count: 7 stabs/14 days.

As soon as we get back to town, I have to go back in to see my regular doctor to see how I am doing on the blood pressure medication.

Doctor Count: 7 visits/20 days.
Needle Count: 7 stabs/20 days.

Then it’s time for another ENBREL needle stab.

Doctor Count: 7 visits/21 days.
Needle Count: 8 stabs/21 days.

Then I have to go back to Student Health again for my last Japanese Encephalitis shot.

Doctor Count: 8 visits/22 days.
Needle Count: 9 stabs/22 days.

Then, yet another ENBREL dose before we leave for China.

Doctor Count: 8 visits/28 days.
Needle Count: 9 stabs/28 days.

Who on earth goes to the doctor eight times in a single month? Or gets stabbed with a needle at least nine separate times in a month? Sick people, that’s who.

I know it’s supposed to make me feel better, but actually it’s quite exhausting.

Halloween Candy

I realized this evening that I take a lot of pills every day. In addition to the Remicade treatments I am now receiving by IV, these days I take at least seven pills every night. Three are vitamins. One is an iron supplement because my body is still rebuilding its iron stores from this summer, when I was seriously anemic from the undiagnosed autoimmune disease. The second is a combination fish oil/flax seed supplement, because supposedly both of those things are good for people with RA. The last is a general women’s multivitamin, because I figured my body is pretty messed up so I am probably missing out on something I need!

The other four are drugs. The first is a thyroid pill that I have been taking every day of my life since I was diagnosed with my other autoimmune disease in kindergarten. That’s right, I already had autoimmune disease number one – RA is actually number two. The first one is called Hashimoto’s Thyroiditis, where my immune system attacks and destroys my thyroid gland. So I’ve been taking supplemental thyroid hormones since I was five.

The second pill is birth control, which is pretty much mandatory when you are on RA drugs that result in pretzel babies, should a baby happen to occur. Though I must say (perhaps mom and other family members might want to skip the rest of this sentence) untreated RA pretty much serves as birth control all on its own. The third pill is an antibiotic that the doctor gave me for a rash under my arms that may or may not be a side effect from one of the other drugs I am on. It seems to be making the rash go away. The last evening pill is ambien, a sleeping medication, which is supposed to help me sleep better. But I still haven’t been sleeping that well or feeling rested when I wake up in the morning.

So that covers the pills I take in the evening. In the morning I take another dose of the antibiotic, and I also take my daily dose of prednisone. Prednisone is a steroid that is supposed to be helping with the RA pain, but I honestly don’t feel like it is doing that much. But I am on a pretty low dose of it, due to yucky side effects, like weight gain. Honestly, I would probably be worse off without it. However, even with the prednisone, I usually also take several pain killers throughout the course of the day, just to get me through my classes and errands and whatever else needs doing.

On Sunday mornings, I take six methotrexate pills. It’s a weird prescription that requires you to take six pills, once a week.

It’s a lot of pills to swallow. Especially after a long day where I still feel like I am far more exhausted than the few things I managed to accomplish today merit.

But a good friend of mine, who has some experience with health issues of her own, told me that I should think of my medicine not as a burden but as a blessing. She said that I should view the medicine like candy – something to look forward to because it will help me. And I think she might be right. Trying to stay positive about my situation has really helped me get through this so far, so I guess it could also work with my medicine. Maybe the power of positive thinking can actually help my medicine help me feel better.

So, I’m really going to try to think of my medicine like candy. And it must be Halloween!