Sunday, February 3, 2008

I know I haven't been around for a long time. I moved recently, to a fantastic new house (I promise to post pictures as soon as I finish unpacking) and it took me a while to get my net reconnected. But in the meantime, I've had some struggles.

I know that most of you reading this are going to know that I've been having some health issues, and I just kind of wanted to address this up front, because this is going to have to become a major focus of my life so I can try to get well again.

I've suffered from arthritis my whole life, winters have always been painful for me, but it's always been manageable. About 5 years ago I had a bout that was so severe I had to go to the ER, but I was better in a couple of days. Well this winter I've been in a state of constant flaring for nearly three months now. To explain how I've felt to be under this much pain is difficult. Imagine having the worst cold, or a flu for about three months. That constant aching, that constant brain muddle, the sense of just not being quite right, and being tired all the time. This is what I've been struggling with. The problem has been, my inflammation was out of control. I couldn't move my arms, my hands were locked in, and my feet were so swollen I could barely wear shoes. It was finally necessary to get into a rheumatologist. I went in and have been receiving a barrage of tests. Deep medical history, 15 vials of blood taken at once, x-rays, intense muscle stress tests, it has been a draining and scary process. Lots of potential disorders were bandied around, Lupus, Rheumatoid Arthritis, Sjogrens, SLE, Raynauds. All autoimmune disorders, and all very likely since autoimmune disorders run in my family. My mother, sister and I all have Hashimoto's thyroiditis, which is a genetic thyroid disorder. So we all have hypothyroidism, which is part of my severe weight gain over the past 6 years. (Thyroid controls your metabolism, your energy levels, and is essential in mood stabilization through B-vitamin absorption, without it you become lethargic, start gaining weight, lose your hair, and generally develop depression.) My sister also suffers from rheumatoid arthritis and Sjogrens. Sjogrens causes every moisture creating part of your body to stop functioning properly. She is incapable of crying at this point. She has to use eyedrops all day. It damages your eyes and sinuses. My brother was diagnosed with multiple sclerosis several years ago, and he has the disease pretty well under control, but he still flares periodically, and that is scary as hell to witness.

Finally all the tests were done and I came back into the office to get a really crappy answer, I have two conditions working in tandem right now. Antiphospholipid syndrome is basically a disease that cause hypercoagulation. It opens me up to the risk of blood clots, strokes, heart attacks, edema, etc; and actually explains the reason why I've had two miscarriages, if I ever get pregnant, I might be a high risk pregnancy. But luckily, it seems very mild in my case, and I just take a baby aspirin every night. The other condition isn't as clear cut. Undifferentiated connective tissue disease. And as the name suggests, it's a very nebulous diagnosis. It's little like a timebomb. It can develop into any of the disease I mentioned previously, although in my case, my body has more lupus like symptoms. Or it could become mixed connective tissue disease, which would be several disorders working together. Like possibly lupus AND sjogrens. Or, the third case scenario is that it won't progress. That we caught it somewhat early in the midst of a massive flare, and we may be able to manage it.

I had to start taking meds for it, and all the meds that are used for autoimmune disorders are nasty beasts. They have varying degrees of severity when it comes to side effects, and also varying degrees in cost. One of my sisters meds that she gets once a month costs her $450 out of pocket.

They started me on the most common jumping off drug, Plaquenil. Plaquenil is primarily used as an anti-malarial, but it has disease modification factors that inhibits your immune system from attacking your joints, tissue, muscles, organ, or nervous system. It is generally well tolerated and can be used for several years without worry of toxicity. I started it and was getting ill within two doses. I had severe stomach cramps, I had to be near a bathroom at all times, I was waking up several times a night to dry heave in the bathroom. It was debilitating. I was on that for a month and a half, and I lost 20 lbs, I also was so exhausted and still in so much pain that I ended up in the ER again. Finally the doctor decided that I wasn't tolerating, it wasn't getting easier on me, so I was taken off that.

I had a two week gap where the doctor conferred with other rheumatologists about the next plan of action and I could detox from the plaquenil. The idea of prednisone was bandied about, but it is a steroid and as such will make you gain weight and can put strain on your heart. I decided to stick with the pain for the time being.

I was then given my next med to start, methotrexate. Methotrexate still kind of scares me. I'm now officially on chemotherapy medications. They are toxic on your body and I have to get my blood tested every two weeks. Being as it a chemo med, I'm also losing more hair than I already was, I joke that I'm going to have to start wearing crazy wigs to cover up soon enough. I'm taking prescription strength folic acid for my hair, but it still falls out like crazy.

The truth is though, I'm really fucking scared.

These meds are a little easier for me to tolerate, I take 6 pills all at once, one time a week. For the next 12 hours I'm supposed to stay home in case there are side effects, which can strike at any time. For my combination of conditions and meds, there is a serious fear of pulmonary embolism, which is a blood clot on my lung. And I in fact spent 6 hours in the hospital two weeks ago getting checked for the possibility of one. I got a CT scan which is now my least favorite medical procedure and tons of blood work, ekg, x-rays. Luckily I came back clean, with just a painful tear in the chest wall around my heart. Muscle tears are possible with UCTD if you're flaring, because everything is strained.

So now, I'm confused, sad and stressed out. Medical bills are starting to stack up at a phenomenal rate, and being as desperately depressed with my work situation is just making things worse. I feel that I need to change my job, to save my life. And I'm being told this by family and friends every day. I'm just scared to not have insurance, because I'll be under care for this for an unknown period of my life. It could go into remission or it could advance.

I want to work with a personal trainer who works with people with chronic disease, but that's really expensive, but I know that losing weight would make my life a WHOLE lot better.

But more than anything, I just want to feel the sensation of energy again, the rush of joy with accomplishing something big, I want to feel creative and work on my art more, I want to just not be so scared and alone.

I'm really sorry to dump this out, considering this blog has generally been a pretty lighthearted affair, but I really needed to get this off my chest for my own piece of mind, since I've barely spoken to anyone about this, and not many people know what I'm really going through. Just know, I love my friends, and I love being around you. I want nothing more in the world than to be with the people who lift me up, and make me feel good, laughing and taking my mind off of things.

I love you, whoever manages to read this whole mess.

Peace,
Mindy

3 comments:

Greg said...

Mindy! Never feel bad for telling your health story. Did you know that is what my job is all about (we're creating a website to help people share their stories to help others who may be going through the same thing)? I think I sent you an invite to the site, but let me know if you'd like another. This is exactly the kind of post we love to see (well, not love to see that happening to you, but love to see people sharing), and even though we're small and just getting started, there is a lot of benefit to be gained through sharing and discussing this.

Also, did you tell me before your brother has MS? You know my brother has MS as well. It's amazingly hard to watch, yet he's so strong and inspiring at the same time.

I'm convinced our bodies were made to break and mend and break again. Tiring, isn't it?

Niki said...

Sweetie Dahling,

Seriously! Do NOT be sorry. This is exactly what you need to be doing right now. Talking about it however and to whomever you want. The people who don't understand...don't worry about them. Your true friends will stand by you, whether they understand or not.

I love your freaking guts out. You are so courageous to face this! Seriously, you inspire me. We all have our battles, and I'm sorry that this has to be yours. Just know that there really is something to be gained from this. It may not make itself known right off the bat, but it will. In the mean time, I'm here for you. For whatever you may need from me.

Tripp Fenderson said...

I stumbled across your blog looking for info about people's experience with methotrexate.

I'm starting my treatment today, although for different reasons than you.

I'll admit, I have some of the same concerns regarding taking it -- but given the efficacy of the drug and the close supervision provided by my doctors, I think it's the right path for me.

Good luck and may you have no side effects.