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.

My story, so far

This is the beginning of my story about my fight with RAD- Rheumatoid Auto-Immune Disease for those of you not “in the know.” This blog will serve as a journal for me as well as contain information and links to articles about RAD I find interesting or informative. This is how my story begins.

In high school I had an injury to my right knee and eventually had surgery to correct the problem. As I have gotten older, I have found that occasionally the muscles around that knee will weaken and I will feel a little bit of pain unless I use an exercise bike daily to keep those muscles strong. I generally use my bike 5 days a week and I may hate it most days, but I suffer if I don't do it. It was early July of 2011 when I first began to notice that I was experiencing pain in my knee again in spite of using the bike. It didn't take long before I realized that it was not the same pain, the pain I was used to feeling if I got lazy and didn't ride for a while and by mid July this new pain was not only in my “bad knee” but in my other knee as well. I thought maybe I had twisted it or done something to strain it running around the yard or building the chicken coop or something, but when a couple weeks later, even with regular use of the exercise bike, ice packs, and ibuprofen it didn't get any better, I began to suspect it was something else.

Did I then go to the doctor like my husband advised? No. Of course not. I thought it would get better with time. And it did. For a while. The pain subsided for a week or so and then came back with a vengeance. Getting up and down the stairs in my house was becoming increasingly difficult. Just walking, standing, and sitting was painful. But life goes on and there are always more pressing problems.

So, when did I finally go to the doctor? It was the end of October when I called to make an appointment. By then, it was no longer just my knees I was experiencing pain in. My knees were bad, no question- swollen to twice their normal size, red, and hot to the touch, but my hips were stiff and painful, too. And sometimes my ankles. And my fingers were stiff and achey. And my feet were swollen up like balloons. I had thought that it was the heat during the summer that had caused the swelling in my feet, but shouldn't that have been gone by the time snow was falling? I was beginning to get seriously concerned. I felt like I had aged 50+ years in the last couple of months. That scared me. So I called my doctor. I wasn't able to get in until Friday, November 4^th at which point it was decided that we needed to run some tests. I was to fast and come in Monday morning for the blood work.

I waited anxiously all that week for the test results to come in. Every day the pain and stiffness seemed worse. Finally, on Wednesday November 16^th, all the results were in. I was told there were a couple of abnormalities that pointed at Rheumatoid Arthritis and that I would need to see a Rheumatologist. Since I live in The-Middle-Of-Nowhere, the closest Rheumatologist is two hours away. I was told that they would send all of my records and test results and that the Rheumatologist would call me to set up an appointment.

When they told me over the phone that they were 98% certain that I had Rheumatoid Arthritis I felt my heart drop. I had done enough research and knew enough about my symptoms that I knew this was a big possibility, but that also meant I knew enough to not want it. I was, and still am, absolutely terrified and have so many questions. What is this going to mean for me? For my family? Will I always be in this much pain? How fast will it get worse? Will I be left crippled and helpless? And what exactly do all the experts mean when they say all of these chemo drugs and Biologic DMARDS will help me “live as normal a life as possible?” I'm not particularly fond of that "as possible" disclaimer that gets tacked on.

Waiting for the doctor to call was nerve-wracking. And there seemed to be one problem after another trying to find a doctor. After a lot of fighting and arguing and phone calls, I managed to get an appointment for Monday, December 19^th. It felt like that date would never arrive, that I would never be able to make it that long. But I persevered. I just kept going. I managed to make it to that first appointment. Then the x-ray appointments and more lab appointments. Then the MRI appointment, which showed the beginnings of damage in my hands. That scared me. It's never good to be told you have holes in the bones of your hands. And finally, on January 31, 2012, almost 7 months after my first suspect symptoms, I was officially diagnosed with Sero-negative Rheumatoid Auto-Immune Disease or Rheumatoid Arthritis.

Every day the pain and stiffness gets worse. And the constant fatigue that goes along with it takes its toll, too. I have pain, stiffness, and inflammation in my knees, hips, ankles, toes, fingers, wrists, elbows, shoulders, neck, and jaw. Lately I've been noticing that it's beginning to cause problems with my vocal chords, too.There's no position I can be in that will stop the pain. The pain is constant and unending no matter what I do or what medications I take. So far, anyway. Just simple day to day tasks have become a challenge. I can't do the dishes or change the sheets or clean the house. I can't go up and down the basement stairs to do the laundry and even if I could, lifting the laundry baskets would be impossible. Even a carton of milk is too heavy. Getting up from a chair has become a 2 or 3 minute ordeal. Brushing my teeth is difficult and painful not just because I have to grip the toothbrush for two whole minutes, but because that seems about four times longer than I can comfortably keep my mouth open. Sometimes I even need help just washing and brushing my hair or putting on my clothes. Shoes are impossible. I can't tie them and none of my slip-on shoes will fit on my swollen feet. I find myself having to ask for help more and more. That's not something I do very well, but I'm trying.

I'm scared about how quickly everything seems to be progressing. I worry that it means my RA is particularly aggressive. I try to stay positive and strong. I'm not very good at that and some days and I cry more than I would like to admit. Some days I am so angry about all of it. Those are bad days. Those are the days I cry more and take out all of my frustrations on my husband and wind up feeling even worse. Like the day I was struggling to put on my socks and shoes and he offered to help. I yelled at him and told him I could do it myself. Truthfully, I would have liked the help right then, but I didn't want to have to ask. I shouldn't have to ask for help with something so basic. I should be able to put my own shoes on and it frustrates me that I can't.

Most days I just want my old life back.

What exactly is RAD?

Rheumatoid Autoimmune Disease (RAD, RA, or Rheumatoid Arthritis) is a systemic autoimmune disease which primarily attacks the joints. Specifically, the synovial tissues that surround the joints. In RAD, the body's immune system attacks not only foreign substances like bacteria and viruses, but also attacks the body itself. It results in symptoms including joint pain, joint stiffness, fatigue and others that may affect the entire body. It may affect just a few joints, or every joint in some cases. The tissues which support and connect joints, and eventually the bone tissues themselves are gradually destroyed. The result is dislocation, disability, and deformity, often leading to multiple joint replacements.

There are many secondary problems people with RAD face. Skin problems like rheumatoid nodules which are lumps of tissue usually under the skin, particularly on the elbows, forearms, heels, or fingers but can also occur in other areas of the body, such as the lungs and heart. Many people experience inflammation of the blood vessels, or vasculitis, which can cause changes to the skin and surrounding tissue that can appear as ulcers. Eye complications are also common which can result in a loss of vision. Heart and blood vessel problems are one of the more serious complications from RAD. Pericarditis (inflammation of the membrane that surrounds the heart), myocarditis (inflammation of the heart itself) are serious risks. In addition to the disease itself causing heart problems, the drugs used for RAD treatment may also weaken the heart and other muscles increasing the risk of cardiovascular disease, heart attack, and stoke.

There is a greater risk of anemia, and active inflammation may also lead to high levels of blood platelets, while treatment to suppress the immune system may lead to low levels of blood platelets, a condition called thrombocytopenia. There is an increased risk of lymphoma, a cancer of the lymph nodes. Inflammation can also attack your lungs and lead to problems such as a collapsed lung, coughing up blood, infection, or the accumulation of fluid between the lining of the lung and the chest cavity.

RAD is life-long and debilitating. There is no cure.