I've been "upgraded"- or would that be downgraded?

It has been a bad week, pain and fatigue-wise. I'm not going to whine and cry about it (anymore!). I've done enough of that. So, we'll just go over what happened at the doctor.

Last Monday was another appointment with my rheumatologist. I went in ready to fight. Okay. Not fight, just ready to make sure he understood how much worse things had gotten for me lately. I had a list ready. It was a pretty long list. He listened to every complaint, asked additional questions, and was just generally wonderful. After examining my joints (aka torture) he said the words we were hoping for- it's time for biologics. In the end, we switched my anti-inflammatory, increased the methotrexate dosage, and prescribed Humira.

All good news, right? Except that now I have to wait. Again. There is a whole insurance process that has to be completed before I can get the medication. It's such a backwards, convoluted, and bizarre process that I won't even bother trying to explain it here. The important thing is that it can take a couple weeks before the whole process, including my case being presented to the insurance review board, is complete and I know whether or not I have been approved. And apparently, in some cases, you won't even know you've been approved until the insurance company calls you to tell you that your giant refrigerated box of medicine is on it's way. I guess we'll see...

The other thing I learned at the rheumatologist last week happened when I glanced at the doctor's notes and noticed the words "severe case" underlined three times. He had told me before that he would say my case was moderate, so I guess that means I've been given an upgrade! Exciting, no? No. Not really. In truth, I would much rather be moderate. Even better, how about mild?!

That's why I'm so anxious for the Humira, in spite of it's hefty $1500 a  month price tag. It gives me a chance at regaining at least some of my life. I might be able to hold a book and read it! I might be able to wash my own hair! Dress myself! Make dinner for my family! Pour my own tea! Any of these things would be a major improvement right now and Humira is my best shot at getting that back. I am also aware that there are some utterly terrifying side effects and that it's even possible that this medication won't work for me. TNF blockers don't work for everyone, and even when they do work, they often stop working after a while, necessitating a medication change. All of it is worth it to me if there's a chance of being able to live again.

Let's hope they're fast.

Playing Catch Up

A lot has been going on lately. Some good, some bad, some... eh. First, the good. Part of the reason I haven't updated is because I spent some much needed time with friends recently, huddled together, cursing the snow, and have an amazing time. It means a lot to have friends that wonderful and understanding. They are the best and I already miss them terribly.

Now, onto to the RAD related stuff. The elimination diet was a complete failure. I was so hopeful for those couple of days! But after those days, everything was just the same as always. There was never any improvement and even upon reintroduction of foods, there was no difference. I was disappointed not to find something I could do to make the pain more tolerable, but happy to be able to eat whatever I want again. Oh well. It was worth trying, I think.

Also, after two weeks at the highest possible oral dose of methotrexate, which left me horrendously ill 3 or 4 days out of the week, I called my doctor explaining that spending roughly half of the week nauseous and/or vomiting was not really my idea of fun, I was switched to the injectable form of methotrexate. So, once a week, my amazing husband gets to- I mean, has to jab me with a needle full of sickeningly yellow liquid. I am incredibly thankful that he is able to do it for me because there is no way my fingers would be able to function well enough, especially first thing in the morning, to do it myself. The good thing about the move to the injections is that I have absolutely no more nausea. That was a welcome relief. So, at least my Wednesday's are no longer spent mostly in the bathroom. It does leave me incredibly exhausted, though. It's a really weird feeling, actually. Somewhere between a really bad hangover (not that I have personally ever experienced such a thing, of course!) and that hit-by-a-truck-and-I-can't-even-move feeling you get with like a really bad flu. Still, it's a lot better than being sick for half of the week!

My main problem with the MTX is that it doesn't actually seem to be doing anything for me. I should be showing at least some signs of improvement by now and instead I have been getting progressively worse. This week has been really hard. I have been so fatigued all week, I spend hours of every day fighting to keep my eyes open. The amount of pain I have had this week has also increased, leaving me feeling pretty sad and discouraged.

I have 10 more days until my next appointment with the rheumatologist. If things continue they way they have this week, it could very well feel like the longest 10 days of my life. I hope we can come up with a new plan this time and it's not just more keep taking the MTX and see what happens. Hopefully, I'll be moving on to bigger, better medication.

As a side note, maybe it's just my bad attitude, but I swear if I see one more blog post or comment from someone regarding dealing with the chronic pain and fatigue of RAD saying to "think of Dory in Finding Nemo and just keep swimming" I just might come completely unhinged.

Elimination Diet Days 2 and 3

A funny thing happened on day 2. I had a really good day! Sure, there was pain, but it wasn't nearly as bad as usual. In fact, I hurt so much less on day 2, I actually noticed my fatigue. Usually it's secondary for me. It was interesting. But it couldn't be the diet, right? I mean, not yet?

And now, here we are on day 3 and I am having another good day! That's two in a row and around here, that is unheard of. I don't know that I'm ready to declare that something I had been eating was aggravating my symptoms. At least not yet. I'm waiting to see what tomorrow brings.

So, what have I been eating? Well, day 2's breakfast consisted of a bowl of diced pears and halved cherries topped with whipped coconut milk, and lunch was lentil leftovers and a salad. Dinner was more exciting, though. For dinner I made salmon with cilantro pesto, rice pilaf, and roasted brussels sprouts with garlic.


For day 3, I made another bowl of rice porridge, again topped with pears- the last pear needed to be used quickly! For lunch I just ate the leftover salmon and some rice pilaf. But to celebrate a second whole day of feeling better, I went Indian food crazy for dinner! I made vegetable korma, saag aloo (sort of- I can't eat potatoes, of course, so I substituted sweet potatoes with outstanding results, I might add!), dhal, and rice. It was positively scrumptious. Then I made a little raspberry-peach sorbet to round it all out.



Now that I can almost cross my fingers, I'm crossing them that my good days continue!

Elimination Diet Day One

So, day one went quite well! Lunch and dinner are pretty easy to deal with. Breakfast is seeming a little more limited. I'm really wishing I owned a Vitamix or some sort of super fancy juicer for this. That would make breakfast easier. Fresh juice/smoothies would be fine with me for breakfast everyday! But it's not that long until I'll be slowly adding stuff back in so even having to repeat the same breakfasts over and over won't be so bad.



This was breakfast today- brown rice porridge with diced pears, cinnamon, and wee bit of honey. I put raw brown rice through the food processor, a very loud process! Grind it until it's about half flour and half little pieces then cook with water until done. I think this would be really easy to make in the crockpot overnight, then in the morning, just top with whatever fruit you want. Easy and tasty!



I almost didn't bother taking a picture of lunch because it was just a salad with shredded carrot, diced apple, and raw sunflower seeds, but in the end, it was so pretty in the bowl I just had to!



I had plans for dinner. Really good plans for dinner. And then late in the afternoon, after a lot of time spent playing music and singing in the living room I realized I hadn't gotten anything ready for dinner. The best laid plans and all that. So what to do? Improvise. I took what I had and threw it all together to make Lentils with caramelized onions, sweet potato, and kale. Served over rice this was really good and really filling. B ate two heaping bowls of it!

So far so good!

Wish Me Luck!

After much reading, thought, debate, and reading some more, I have made the decision to try an elimination diet in an effort to do something, anything, to try and alleviate some of my symptoms. Now, I absolutely do not believe that changing my diet will "cure" me. I don't believe that if I just go gluten free, or vegan, or fill-in-the-blank, that I will be completely back to normal and no longer need medication. I know there are plenty of people out there that do think this way, but I have read enough about this disease to know better.

So, what do I hope to get out of this then? Frankly, even just a small bit of relief will make it worth it to me. If I find out that when I eat certain foods, my pain is worse, then it makes sense to me to not eat that food anymore. The only way to find out, is to get rid of all the possible offensive foods and then slowly put them back in to my diet.

As of tomorrow morning, I will be eating a vegetarian, gluten free, egg free, dairy free, soy free, corn free, yeast free diet. Also off the menu- beans, nuts, tropical fruits, citrus fruits, sugar, vinegar, mushrooms, and nightshade vegetables (potatoes, tomatoes, peppers, eggplant). It will be challenging at first, but if it helps, totally worth it. I'll keep you posted on how it goes!

In Which I Learn an Important Lesson

These last two weeks have been a little bit difficult for me. I've spent far too much time being angry and then sad and then depressed and then angry again. Sometimes I find it nearly impossible to accept that this is my life now and I think that's where my anger and sadness have come from. Because these last couple weeks have been all about learning to accept my limitations.

Those of you that know me well, know that I pretty much don't know the meaning of the word limitations. I will push myself further and harder than is probably good for me. I don't ask for help. I just do it. Right now, I can't "just do" anything. I am having to ask for help for even the most simple tasks, like carrying the milk from the refrigerator to the counter or putting on my socks. I have accepted that. For some reason, it's okay for me to ask for help with little things, to accept that I may need a little help right now while I'm waiting in insurance limbo. But those are not the limitations I have been facing lately. Instead, I've been looking at the big picture. And frankly, the big picture scares the hell out of me.

It started with a seed catalog. It's one of my favorite times of the year, going through this big colorful catalog full of garden potential, trying to narrow it all down to what will be grown in the garden this year. Do I stick with the old favorites? Branch out and try something new? A little of both? Yes, I am easily excited. But this year, there was no feeling of excitement. Instead there was nothing but feelings of dread because the truth is, I just don't think I can maintain the huge garden we always put in. Not anymore. Sure, I could ask for help and I know I could get it. I would have tons of help planting and weeding and watering and everything. But I wasn't thinking about this year. I was thinking about the big picture. Long term. Realizing that there are now limits to what I can do. And there always will be. Like it or not, my life is, and has to be, different now.

So, sure. I could call up everyone I know and they could all pitch in to help me put in the garden this year. But what happens next year? And the year after that? And none of that even addresses why I have a garden. It's not about the end product for me. Yes, those heirloom tomatoes are delicious, but I put in the garden every year because it brings me joy. The feeling of my hands digging into the sun-warmed earth, the rich, deep smell of the compost being mixed in, even getting on my knees and pulling the weeds from around the precious little sprout. Those are the things that bring me joy, the things that are good for my soul. Letting someone else do that work for me defeats the entire purpose behind my garden. So, I've struggled. I've delayed ordering seeds. I've spent a lot of time going over the possibilities until I finally made a decision.

This year, the garden fence is coming down. The strawberry plants will be relocated. I'm accepting my limitations and I'm making room for more things that bring me joy by putting in a patio and building a beautiful place to talk and eat with friends and family, play music and sing. Things that make me even happier than gardening. Because right now, I need all the happy can get. I'll still have a garden, but it will be much smaller and much more manageable. And there will likely be an abundance of potted flowers and herbs, too, because I really just can't help myself. And I have learned a valuable lesson that I probably should have learned years ago-
that accepting my limitations is not the same thing as admitting defeat.

I want a new drug...

This photo represents my day. A Wednesday, more accurately, since there, in the foreground are the Little Yellow Pills of Doom (Methotrexate) and those are only taken on Wednesdays. These are all the things I have to take in order to make it through a day. Not a "if I just take these pills I feel all better and I can run and jump and climb trees" kind of make it through, but a "if I just take these pills I will be able to get dressed by myself- as long as there are no buttons- and feed myself" kind of making it through the day. See over there on the left? That's the Prednisone. Yeah, I know, bad, evil, terrible steroids, but without them I wouldn't even be able to get out of bed. Heck, I wouldn't even be able to roll over in bed. And I realize now that this photo is missing my calcium pills which I have to take in order to counter-act the calcium leaching steroids.

Anyway, next to the Prednisone we have my NSAIDS, which may not actually be doing anything, but since they might be, my rheumatologist is hesitant to take them out of the mix. Next comes the folic acid. It's an insane amount of folic acid. Something like 100 times the RDA. See, the Methotrexate is a folate antagonist which means it blocks the function of folic acid in my body. This one is a tricky medication, though, because if I flood my system with folic acid it should, in theory, make the Methotrexate less effective. In reality, it doesn't really seem to reduce efficacy much at all and what it does do is lessen some of the more severe side effects of Methotrexate, such as mouth ulcers and nausea.

The last medication in the photo, the one all the way on the right, is a narcotic. It's the one I only take when absolutely necessary. I am not a big fan of narcotics. Most of them either make me sick or super sleepy, or if I'm really lucky, both. This is what I resort to when the choice is take the pills or lay in bed and cry.

That's what I take right now. What I really want to be taking, what I, and my doctor, think will do the most to help me is one of Biologic DMARD's. DMARD stands for Disease Modifying Anti-rheumatic Drug, and the Biologics, like Enbrel, Humira, Orencia, etc. currently seem to be the most effective. I won't go into the specifics of how these medications all work. I'll save that for another post. The important thing here is that I, and more importantly in this case my rheumatologist, believe that I won't truly have any relief from symptoms and joint damage until I am on one of these medications. The American College of Rheumatology believes that quick, aggressive treatment is the most successful way to deal with RAD. Studies have indicated that beginning treatment with a DMARD, like Methotrexate, in combination with one of the Biologic DMARD's within the first three months of diagnosis is the most effective way of reducing permanent joint damage and achieving remission.

So, why am I not using this medication now? Two words. Insurance companies. Yep. This medication and course of treatment that my doctor feels I will benefit from, that studies show will actually help me maybe get my life back needs to be approved by my insurance company before I can try it. And unfortunately, my insurance company requires that I be on oral DMARD's (such as methotrexate) for 3-6 months without success before they will cover the very sizable cost of Biologics. Yes, you read that right. Doctors agree that it is important to begin treatment within those first three months while my insurance company prefers to make me wait up to 6 months before approval.

Maybe it's just me, but it seems very wrong that a medical treatment that my doctor believes will benefit me right now has to wait because the insurance company says so. If it weren't for the fact that Biologics are some of the most expensive medicine in the world, costing anywhere from $15-30,000 a year, I would not even bother with insurance.

So, I wait. With any luck, my next doctor visit at the end of April will result in (finally!) a prescription for medication that will help me.