Seek...and ye shall find?

I'm actively pursuing a diagnosis again...and it's so exhausting. It just drains me emotionally, mentally, and physically. It's this crazy stew of emotions, all swirling together, constantly at the forefront of my mind. It makes it hard to focus on anything else or just be able to relax. Anxiety, hope, pessimism, anger, frustration....there's just so much there, because it's been so long (almost 15 years)....and I just want to know what's wrong with me.

For a few years, I stopped caring (or at least told myself I didn't care) about getting a diagnosis, because it's so wearying, the cycle of  having tests proposed, getting the blood drawn, then waiting....waiting...waiting for the results to come back and finding out they're negative yet again.

And the doctors and other medical people I've dealt with, in general, just don't care that much and suck at following up. I have to hound them, over and over again, to get any kind of response back. That's why I'm done dealing with the Muscular Dystrophy Association Clinic (which is a whole post on its own). They are absolute crap at follow-up unless you badger them multiple times. It was very evident that I wasn't seen as a human being, with feelings and worries, full of pain and questions; I was a combination of symptoms that didn't fit nicely into an easy diagnosis, a blood test, a research project, something to think about in a distant and academic way. Their genetic counselor seems to act like she only has to talk to me when I go in for my yearly visit, even though she has all my contact info. She doesn't update you on anything--it's just radio silence for months and months. Supposedly they were having issues with the lab that runs some of their blood tests this last year, but she never bothered to let me know. And then she just "forgot" to call or email me with the results. I didn't even know the lab results were back until I got a bill for it! How hard is it to send a simple email? There was only ever one, ONE! doctor I was seen by at the MDA clinic that made me feel cared for and considered as a person...and he recently left.

I have no desire to be handed off to another academic, research paper oriented doctor who could care less about the patient in front of him. I never got any advice from the MDA on how to actually live with my illness, besides one nurse telling me to take an obscene amount of ibuprofen every day. One doctor said, "Well, you're not nearly as bad off as my other patients," as if that somehow meant I didn't need to seek physical therapy or other treatments to improve my quality of life because I wasn't incapacitated and severely disabled. I was never given any advice or suggestions on ways to maintain my muscle strength or energy levels. It was just tests, tests and more tests, and sometimes having to wait more than a year, let me repeat, MORE THAN A YEAR, to get back results from tests that take maybe a few weeks to do.

I was so turned off by the way I was treated by the MDA that I just shut off for a while. I couldn't take the emotional roller coaster anymore. I didn't even want to go to the regular doctor unless I was sick with something easily fixed, like an ear infection or something. The emotional strain is so hard, and doctors just don't get that. I am the one watching my body fall apart bit by bit, I am the one living with fatigue and pain, I am the one worried about the future (What if I wind up in a wheelchair? What work can I do that won't exhaust me? How can I have kids if I'm this tired and weak all the time? etc, etc), I am the one who has to live with it all day in and day out. And it can be so weighty and just overwhelming at times.

I have been struggling a lot emotionally since last summer. I have been feeling really, really down about being sick over the last several months. I have cried with Colin on multiple occasions and shared with him how utterly lonely and overwhelming it can be some days. It just feels sometimes like no one cares, that I am utterly alone in my desire to find out what the hell is wrong with me, that I am just another appointment the doctor crosses off their list for the day.

And I tried to not care for awhile, to put all those emotions away, but it just keeps coming back: I want a name to put to all these symptoms. I. Just. Want. To. Know.

I don't want a pat on the head and to be sent on my way, told that at least I'm not as bad off as other patients. I don't want to be told to keep waiting and waiting, and maybe someday someone somewhere will get around to figuring out what's wrong with me. I don't want to keep being told what I don't have. I don't want to hear any more academic jargon that just describes my symptoms (I live with it every day, I know what my symptoms are, thankyouverymuch). I don't want to be dismissed, as if I don't have any insight to offer because I don't have MD after my name. I don't want answers to questions I didn't ask or care about.

I want a little compassion, some empathy, acknowledgement that I am a living, breathing human being who has been struggling along for almost 15 years now with no clue as to what is making my body slowly but surely fall apart. That even though I keep hitting wall after wall, I have kept trying to find an answer.

And now, maybe, a lead of some kind. I'm trying so hard to not get my hopes up about this, but I'm going to get tested for celiac disease in a couple weeks. I have been doing a lot of research on celiac recently, and have discovered that people with unexplained neuropathy (which is what I have) should get tested, as a certain percentage of people will have celiac disease. (thank you, Celiac Disease Center for helpful and accurate info!) My younger brother, Andrew, and my grandma both have celiac, which puts me at a strong likelihood of also having it.

I can't let myself get too excited, because it could all come back negative yet again. But I so hope that this is it. That finally, finally! I will have an answer, a diagnosis, the reason for why I have been sick for so long. Yeah, switching to eating gluten free would be inconvenient at first, but I would be more than willing to make the change if that's what has been making me sick all these years. I will also be spitting mad at the MDA, because that's such an easy thing to test for.

Fingers crossed, I will know in a few weeks.

Acceptance

I asked to have grab bars installed in my bathroom today.

I should have done it right after we first moved in two years ago...but I am a prideful person and didn't want to admit that I need them.
Maybe when I fell out of the shower last summer and bashed my back against the toilet, that might have been a good sign it was time to ask.
Or the fact that when I close my eyes, I have pretty much no sense of balance and need to hold on to something or else I start tipping over. Well, even with my eyes open, it's not much better. Sometimes my balance just suddenly dissipates , and I need to grab hold of something solidly anchored to prevent a face-plant.

Either way, I finally swallowed my pride and stopped by the apartment complex office today, fighting anxiety that I would have to fight to get what I need or provide a lengthy justification. But it was surprisingly.... easy. The office manager didn't even bat an eye, just put in an order for the maintenance guy to install the grab bars. Her response was really kind: "Oh, we've put in plenty of those. We probably have some on hand already, so it shouldn't take too long to get them installed."
I don't know what I was expecting really (the front office here is always so helpful and quick to take care of problems), but all the anxiety rushed out of me like a deflating balloon, and I immediately felt so much lighter.
I guess there's a part of me that always expects people to not be helpful or understanding, that their response will be something along the lines of, "Why? You don't look sick." I expect to be shot down rather than supported.

Maybe some of that comes from living in denial for so long about my health. I mean, I know I'm sick and have physical disabilities, but for the last 12 years there's always been a part of my brain that just hasn't accepted it. That side of me held to the belief that the next test or specialist or clinic would reveal my illness was an easily fixable problem, and I would be healthy and whole again. Not held back by weakness and fatigue, or having to plan my days based on how tired I am, or scrapping plans midday because my energy just took a nosedive. There was that voice in my head that said I didn't have to deal with any of this, because eventually it would just go away and I could go back to being healthy and normal.

And I think it's finally hit me and truly sunk in that I am sick and it isn't ever going to go away. I have an undiagnosed form of neuropathy, and I've been waiting for that magical diagnosis for more than a decade to fix everything...but I have to deal with this in the here and now; I can't keep waiting for "someday when I know what's wrong with me" to take charge of my health. Because there isn't some fairy godmother/doctor who is going to appear, wave their magic wand and make it all better. If I'm going to take better care of myself this year and be a stronger advocate for what I need, I have to be realistic about my health and what I can and cannot do.

I think the last 12 years have been me slowly making my way through the five stages of grief. I've cycled through the first four--denial, anger, bargaining, depression--for years, but haven't ever truly gotten towards acceptance up until now. Just because I've been able to talk about my health more openly in recent years doesn't mean I had truly come to terms with it. I can have a normal conversation about what my illness entails and not fall apart sobbing on someone, but that doesn't mean I'm anywhere close to okay with it.

I can't advocate for myself effectively if I'm not honest about what my needs are. I need to admit my weaknesses and disabilities, because how can I improve my daily life otherwise? I use leg braces to support my legs and feet, which keeps my hips and back better aligned than if I was limping around. I have handicap parking to save energy, especially in the winter when it's cold and icy and it's easy for me to slip in slushy parking lots. I get massage therapy and chiropractic care every three weeks to help maintain my muscle strength and keep my back in good shape. I take my vitamins every day, especially Vitamin D in the winter, because it helps my body function well. I'm trying to eat healthier: this month I added green smoothies to my diet, because it improves my energy levels and gives my body good fuel to run on. I pay attention to my energy levels so I don't over exert myself and get sick. And today I asked to have grab bars installed in my bathroom.

Because I can't keep living in denial. 

Alternative healthcare

I had my first acupuncture experience today. The cynical, instant gratification side of me wants to label it woo woo quackery, and just go to the doctor and get a bunch of pills to fix things right now (what do you mean, "cumulative effect?" I have to do this more than once for it to do something? That's just...un-American!). But then I remind myself that I thought the exact same thing about chiropractic care before I started getting my back adjusted several years ago.

Looks freaky, but it doesn't hurt at all

And the thing with taking painkillers, it just masks the problem, it doesn't actually resolve the issue. I've come to realize, if my body hurts, there's a reason why it's hurting. Shocking, I know. In our modern society, we're just used to always taking a pill whenever something aches or feels out of the ordinary. Once the pain goes away, we think the problem's solved. In reality, we've just treated the symptom, but not taken care of the root cause.

As someone living with an undiagnosed form of muscular dystrophy, I know how little help regular doctors can be at times. I've ridden the medical merry-go-round of tests and more tests that only told me what I don't have. But that doesn't help me live my everyday life. It's my body, I want to take care of it, and sometimes that means stepping out of the box, moving beyond my preconceived notions and prejudices. I'm not going to go off the deep end and throw all caution to the wind, but I am willing to try something a little unorthodox if it's going to help me be healthier.

Over the last few years, I've incorporated some elements of what's labeled "alternative" healthcare into my life. I see a chiropractor once a month to help maintain good alignment in my back and neck (essential when you're on your feet all day working in retail). Also once a month, I get a nice hour long massage (very relaxing, and helps my muscles from tightening up too much). I took an adapted yoga class for about six months (also super relaxing, and helped me pay attention to maintaining good posture and balance). And I feel really good lately--I haven't been majorly sick in a long time.

But if I get a sinus infection or pneumonia, yes, I'm going to go to the clinic and see my doctor and get antibiotics to take care of it. I'm not going to stop seeking medical care--that's pretty ludicrous in my eyes. But trying these alternative things in addition to regular check-ups has helped me immensely. It just takes a little more patience and self-discipline than popping a few pills.

So now I'm trying out acupuncture. I've heard it can help with chronic pain (it's a low grade ache, but it still sucks) and tinnitus (can you say highly annoying?). The guy I saw is highly certified and was suggested by my excellent massage therapist. I get that it's not a magic bullet, and I'm not going to feel instantly fantastic. It was definitely relaxing though, and you pretty much don't feel the needles at all--they're very tiny. I got an herbal mixture to drink to help with digestion (I've lost some weight over the last six months, which is not good when you're already underweight and weak). So, we'll see how I feel in a few weeks. I'm guessing it's going to help in some way, based on past experiences with other things I was initially highly skeptical of. If it improves my quality of life, I don't really care whether it's Western or Eastern style medicine.

There are certain "alternative" things I will never be convinced to try, however. The Mooncup being one of those (go on, Google it; you know you want to). In this case, I'm very happy to stick with the standard operating procedure on that one.

Learning to walk again

I mentioned last week about my new leg braces. I forgot how long it takes to get used to them. I got my first set of Ankle Foot Orthotics (AFOs) when I was 17, so it's been about seven years of me using them pretty much every day. I didn't realize how much of the way I walk has been changed by wearing them. With the new carbon fiber AFOs, I've actually had to re-learn how to walk.

The white plastic ones give support at the back of the leg and completely envelop the calf. There's not much flexibility, it's like a pillar--it supports weight and offers stability. With the carbon fiber AFOs, the support is from the front and runs down the side of my foot. My calf muscles can flex and move more naturally as I walk, but my ankles are still supported so my feet don't drop and drag. The new AFOs are thinner and weigh less, so I feel like my legs are floating as I lift my feet. I actually have to think about walking naturally, because I haven't in so long. It's been throwing me off a bit this week, because it should be something I don't have to think about. My legs have to adjust to something completely different than what I've been doing for seven years. In a few weeks, I'm sure I'll have completely adjusted and acclimated, but in the interim it definitely feels like I'm a little toddler finding my balance. I mean, when was the last time you had to really think about putting one foot in front of the other? Or stand up from sitting? Or walk up and down stairs? It's just weird. And amazing at the same time.

I almost started crying when I was walking up and down the hall at the Orthotics office last week. You have no idea how fantastic it felt! I really can't describe what it's like to go from having your legs wrapped in clunky plastic to something that lets your leg move in a more natural way. I feel less disabled in a way, even though my symptoms haven't changed a bit. I feel more like a normal person again, because I can actually walk more naturally. I wish that these were the leg braces I'd started out with seven years ago, because I know I would have had a lot fewer problems with them. But unfortunately, the advances and testing just hadn't been made quite yet. Even switching from the braces being white to black, for some reason, seems better. I don't know why. Maybe the white just speaks more to me of medical issues and sickness and doctors and hospitals, whereas the black looks more like something you'd wear if you got an injury playing sports or something. There's a lot less brace all over my legs, which just makes me feel less handicapped and weighted down. I'm still not going to be jogging up and down stairs, but I just feel like less of a gimp now.

Leg braces and stuff

I got new leg braces yesterday; I really hope they work out. I've been walking around the house today, breaking them in. You can't just put on a new pair and go, that would be too much too soon. Especially since this set is completely different from the last three. I have a love-hate relationship with needing leg braces: I love that I can walk better and not get tired out...but I hate them for many reasons.

I first started wearing leg braces, or Ankle-Foot Orthotics (AFOs), when I was 17. I immediately started having issues with the skin on the bottoms of my feet. My skin broke out, cracked, bled, dried out, cracked some more, bled some more....yeah, super fun to deal with when you're just starting college. And that continued to varying degrees until 2010 (when I was 23....yup, almost 7 years of dealing with that). I was tested for allergies, nothing. I tried different kinds of padding in the brace, didn't help.

I hated wearing these so much I can't even describe it

Also, the first pair of AFOs I got were very clunky, thick and hinged at the ankle. The hinge was supposed to give me more flexibility, but it also made this annoying "pop!" whenever I walked and would catch my clothes, making me trip or stumble sometimes. I was still coming to terms with the fact that I had a chronic illness and wasn't comfortable talking about it yet. The issues with the skin on my feet, the cumbersome braces, just everything combined, I didn't want to even think about it most of the time! Suffice to say, I was not a very happy camper.

A few years later, it was time for a new set of AFOs. Wow! What a difference. No more stupid hinge thing, they were lighter and thinner, and needed less adjustments at the outset. By this time, I'd found shoes that fit right, figured out I needed leg warmers and knee high socks to be comfortable, and was just a bit more comfortable talking about why I needed to wear leg braces. I didn't and still don't wear shorts--being so thin, I get cold pretty easy even in the warmer months. If I'm hot I'll just wear a long flowy skirt. Part of that is my style and partly because I feel weird and uncomfortable with my leg braces showing like that. I like to be able to choose to tell people rather than letting them jump to conclusions.

Anyways, I had a third set made with the standard white plastic a couple years ago. It was so nice to have an extra pair. If I came home from work and wanted to go out, I could just switch AFOs and be on my way, not having to worry about the moisture building up on my feet. If you've already been on your feet for seven hours, you really don't want the same sweaty plastic sitting against your skin for any more time.

And now, I have a brand spanking new set made from carbon fiber! They're super light, so thin I can actually wear my true shoe size (instead of having to wear 1 or 2 sizes larger), and will be much more bearable in the summer.

I'm so excited!

As you can see, the back is completely open except for the two straps. The support bar runs down the side of the foot, which means no pressure sores or calluses on my heels. I don't have to worry about skin issues anymore, because the lining of my shoe is what I'll be standing on. You pull out the shoe lining, put the brace in the shoe, then put the lining back in, then slide your feet in. I'm going to have to get used to a whole new way of putting my shoes on actually.

You have no idea how excited I am for this! Carbon fiber is fairly recent, and only within the last several years have the problems been worked out. My orthotics guy told me that he only recently started suggesting this kind of brace, because carbon fiber had problems with cracking and wearing out too fast before. I get that, because I definitely can't have something breaking on me in the middle of my work day!

And like I said, I still have to break them in and get used to wearing something so new. My body actually has to adjust to walking in a more natural way again. I have to get acclimated to the way these AFOs flex when I walk and learn to move with them. Over the next week, I'll work up to wearing them for a full day. In two weeks, I go back to the orthotics office to check in and make sure the braces are working and fitting correctly.

And in the meantime, it's time to do some shoe shopping! I don't think I've ever been so happy to get new shoes.

Diseases, drugs and now...a cure

I actually have some good news to share on the Andrew being sick front!
Some of you already know about my brother, Andrew, and his diseases, but I'll give a brief overview for those of you who don't.

Typical teenage boy, so NOT enthused.

Andrew was born with Chronic Granulomatous Disease (CGD), the same illness that my older brother, James, who died in 1988 had. CGD tends to run in families although it is VERY rare. It's estimated that only 1 in a million people have it. Andrew's taken medicine for CGD his whole life and been hospitalized many times over the years. He knows what it's like to be a human pin cushion very well--I couldn't even guess how many times he's had blood taken.

At the end of 2008, we found out he also has Celiac Disease, which means he can't eat anything with gluten in it (i.e. anything containing wheat). Thankfully, living in a major metropolitan area, we can find good gluten free food pretty easily. Pizza Luce, one of my family's favorite restaurants, even has an excellent GF menu. They justifiably advertise as Minnesota's Best Pizza. So, Andrew adjusted to his new diet, gained a lot of weight and grew like a weed.

Then over a year ago, he started complaining about his gut hurting. It just got worse and worse, he could barely eat and lost a lot of weight. There were a bunch of open sores in his mouth. The doctors found out his intestines were very inflamed and diseased. Pretty much from his mouth all the way through to his anus, he had inflammation and ulcers. One doctor said that Andrew should have been rolling around on the floor screaming, that's how bad it was. He was diagnosed with Inflammatory Bowel Disease (IBD), and his main doctor referred him to the National Institute of Health (NIH) in Bethesda, Maryland.

CGD is rare, but Andrew's doctor is the world's authority on it and sees many patients with it at Children's Hospital here in Minneapolis. Andrew isn't her only patient having stomach and gut issues either. NIH is interested in studying these patients, because they're presenting similar symptoms. People with CGD used to not live very long, but now with medical advances life expectancy is much longer than it once was. The researchers are curious if these gut issues are a symptom of CGD or caused by the life long use of the drugs taken to keep healthy.

So, Andrew and my Mom have flown out there several times now since this summer, and he's been getting different drugs to help with the inflammation in his gut. The awesome thing is everything is paid for, it's cutting edge research, so my parents don't have to try to figure out how they're going to afford all the expensive drugs Andrew's taking. He's slowly gained a tiny bit of weight, although his guts are still messed up.

The most exciting bit of news is that a cure for CGD has been discovered! We'd heard years ago of bone marrow transplants being a possible cure, but at the time it was way too risky and dangerous, with a very low success rate. It was not something to be considered except as a last resort.

They have now successfully done bone marrow transplants for many CGD patients with great success! Another young man with CGD from Minnesota actually just had a transplant this past summer at NIH and is now cured. My parents have decided to move forward in the transplant process after much investigation and prayer. We've known about this since the summer, but were waiting to see if a matched donor could be found before we started sharing about it. The best donor is a sibling, because they're more likely to be an exact match.

My sisters and I had our blood drawn, but that didn't get done right. So then we did cheek swabs...which weren't the right size for the testing machine. We did the swabs again with the correct sized ones this time. We just heard back yesterday: I'm a PERFECT match for Andrew!! And apparently Leah and Hannah are exact matches to each other, so they know who to ask if either of them ever need a kidney.

We're hoping to do the bone marrow transplant next summer out at NIH. Thankfully, they will not need to hack into my hip to harvest the bone marrow. I'll write more about what I'll have to go through as I get more information. Even if they had to break my leg, I'd do it anyways. Andrew will be cured of CGD! Even five years ago, we couldn't have fathomed that there would be a cure.

For those of who have been praying over the years for Andrew to be cured, thank you. God has answered your prayers for a cure. I like to say, sometimes the Lord heals in miraculous, spontaneous ways, and other times He works through the knowledge and expertise of gifted doctors. It's amazing either way.

Rock you like a migraine

Migraines suck, I'm just going say that right off the bat. I tend to get at least one, sometimes two, killer ones in a month. If I try to push through it and keep going about my day, it just gets worse. Like a sneeze, I can feel it coming. It builds slowly, like a river gradually flooding its banks until it starts sweeping houses away. Tylenol or whatever doesn't usually help too much. I find a cold washcloth on my face is more effective for dulling the pain. I just have to ride out the pain until it's over.

I got a doozy of a migraine yesterday at work. It usually takes me two days to really recover and feel normal again. The stabbing pain goes away, but a dull, low-grade headache lingers for a day or two. I don't know about other people, but when I get a migraine, I can't do anything else but lay down and wait for it to pass. Light and sound don't bother me too much actually, I just get sick to my stomach and feel like I'm going to puke. I also get really feverish and feel like a menopausal woman--too hot, too cold, too hot again. My face throbs like I have backed up sinuses even though I don't. Pain sparks behind my eyes, feeling like I got kicked inside my brain. If I'm already feeling sick and try to keep going about my day, hoping it will get better, I'll just get slammed with a tsunami of migraine--like what happened yesterday.

I had a sore throat, which started feeling a little bit better as the day went on, but I started feeling the swell of an oncoming wave of head pain. The store was too busy for me to leave, so I just dealt with it. When I was done for the day, I didn't feel too bad actually, but once I got home, I couldn't do anything but lay down. I couldn't eat or drink anything, just the thought of anything in my mouth made my stomach churn. My appetite still isn't back yet today. And my throat is worse too--I got some tea and a bagel down and that's been it so far. My head goes wonky and the rest of my body follows.

It just takes the wind out of me. I can't force myself to do anything, because the headache will come sweeping back if I try to do too much. I've learned the hard way that if I already have a slight headache, I can't try to shove more things into my day. I finish off whatever it is I'm doing and scale back the rest of my plans for the time being.

Going to the movie theater or watching TV in a dark room are guaranteed headache makers for me. So is drinking too much coffee, which thankfully I don't even like that much anyways. The weirdest cause for a rip roaring migraine I discovered while getting physical therapy several years ago: The physical therapist was testing my flexibility and had me on my back with my head hanging off the edge of a table. She tilted my head down and to the right, and I almost immediately got dizzy and sick feeling. Apparently that was odd in her experience, also because it didn't happen when my head was to the left. I'm just a source of medical mysteries, I guess.

I can't imagine getting migraines constantly--thankfully, this usually happens to me only once a month. But it knocks me out of commission for a couple days so it still sucks. Hopefully by tomorrow I'll be back to full strength and ready to shelve books at work.

Dealing with entropy

I'm feeling cranky today and want to kvetch: I have to wear leg braces, and I hate them with a fiery passion. Sure, they help me walk and not kill myself by tripping over my own feet. And they make it possible for me to stay on my feet for long hours at work. But as much as the leg braces help me, they've caused me a lot of grief as well.

The technical term is Ankle-Foot Orthosis (AFO); they provide a support system for weakened legs, preventing foot drop and hips from getting out of whack from limping. They also are hot and sticky in the summer and get freezing cold in the winter. The skin on the bottoms of my feet reacted horribly when I first started wearing them at 17 and didn't clear up until just last year. Throughout college I had to deal with itchy, cracking, bleeding feet pretty much on a daily basis. It's hard to explain what it feels like to peel off blood stained socks at the end of the day. The doctors couldn't figure out what was wrong--I went through allergy testing with no reactions. I tried prescription after prescription and got worse. I endured the agony of a skin biopsy on the bottom of my foot (the skin was so compromised it just kept ripping when the dermatologist tried to sew it shut). My brother Andrew's doctor was the one to suggest something that finally worked.

Another fun fact about wearing AFOs: pretty shoes are out of the question. Heels? Flats? Sandals? Nope, no and don't even think about it. I pretty much live in Saucony sneakers, because they're the only shoe I've found that fits, is comfortable and lasts a long time. Thankfully, they come in crazy bright colors, which makes it a little more fun.

And who wants to wear a cute little dress or shorts with muscular dystrophy legs? What do I have to show off? I feel awkward and uncomfortable. I've seen the pity in people's eyes, and I don't want to be treated differently because they feel sorry for me. There are days I'm happy that I can hide my disability.

And the reason I have to wear AFOs in the first place: a still undiagnosed disease. It's some sort of muscular dystrophy, but they don't know what kind. And believe me, I've been tested up the wazoo for various diseases. I've put my time in as a pin cushion for the medical establishment. I don't care what I have, I just want to know what it is! I already live with the symptoms every day, I want to have a diagnosis, a name to give the pain.

And I do live with chronic pain: a constant, unwelcome, low grade (for the most part) ache. It's there when I wake up in the morning, when I'm happy, when I'm sad, when I'm hungry...always. Sometimes it's more like background noise and doesn't bother me that much. Occasionally, it spikes, and I bite my lip, clench my hands into fists, gasp out a few choice swear words, and force myself to get on with the task at hand.

As someone who wasn't born sick, it can almost be harder to lose capabilities than to never have had them in the first place. I can't run or even walk very fast, stand on tiptoe, fill out skinny jeans (they look baggy on me), wiggle my toes, lift heavy things, walk up too many stairs, or write much without my hands hurting. I'm super sensitive to getting cold (legwarmers are my friends). I have to ration my energy--I need to give myself time to build up strength to do something, and if I'm too tired, I've learned to not push it. Most of my energy goes to my job, so art making and a social life suffer for it at times.

So, yes, it sucks. A lot. You will rarely hear me bemoan what I'm going through though. I prefer to focus on the good things in life. But today, was one of those times when I needed to complain.

Sickness rant

Reading Neurology Now Magazine tends to depress me. Not for the reasons you might think. It's not because it makes me worry about my future or brings to mind my physical limitations. Neurology Now has a lot of great advice and helpful information (and I even won their first art contest a few years ago). No, the reason it frustrates  me is because I don't know what information actually applies to me. I still don't have an official diagnosis for what's wrong with me. I have muscular dystrophy of some kind, so I've been told at the Muscular Dystrophy Association (MDA) clinic. I have had innumerable tests run, many coming back "inconclusive" which tells you nothing. I can tell you the many diseases I don't have. I can tell you what it's like to endure a pointless spinal tap. I can describe how it feels to undergo multiple EMGs, one of which the doctor was more concerned about looking at the results on the screen than the fact that he was making me bleed because he stabbed me too hard. I'm an old hand at getting MRIs--I even know the best kind of music to bring to drown out the noise. I know from experience to drink a lot of water and have something sugary to eat for blood draws.

I go to the MDA clinic once a year to get told I'm "doing fine." Maybe compared to the last patient who was drooling on herself and can't walk, sure, I'm doing great. But compared to myself, no, I'm not. Ten years ago, I could work out on a treadmill, lift weights and run a mile (albeit not a fast one). Today, I get achy and tired from walking up a few stairs. Lately, my legs have been hurting when I drive my car.

Every year, I go to the clinic, get a bunch of tests done, and feel like I'm sent off with a pat on the head. All the helpful stuff I've had to figure out on my own. No one could tell me, "Hmmm, Elisabeth, you're underweight with low muscle tone and poor circulation, you might want to invest in some sweater vests and leggings to help keep your core warm in the frigid Minnesota winters." Or, "Because your lower legs are weak, your back muscles have to work harder; be careful, you're more prone straining your back and shoulders." Nope, had to find that out the hard way. Or when the skin on the bottom of my feet broke down when I first got leg braces, I was told the skin shouldn't be reacting that way. Well, thanks, Nostradamus, but my feet ARE cracking and bleeding. Andrew's doctor was the one to suggest a cure that actually worked!

I'm convinced I have some form of Charcot-Marie-Tooth Disease (CMT), which I've been tested for twice, both times with a result of "inconclusive." That can mean anything: the blood was too old by the time it got to the lab, something didn't get handled right, the test wasn't analyzed properly, etc. Anyways, I have pretty much all the symptoms: extremely high arches, curled toes, foot drop, wasted lower leg muscles, numbness and tingling in my toes, weakened hand strength, neurologic pain (meaning, pain that doesn't result from an injury, it's the nerves misfiring). Whenever I go to my regular doctor, I always get asked if I've been tested for CMT. When I saw a podiatrist last year, she said I have the highest arches she's ever seen, and asked me multiple times if I'm under the care of a neurologist and if I've been tested for CMT. Unfortunately, I don't have an extra $16,000 laying around to pay for the genetic test. Pretty much, I just follow the advice given to CMT patients. But I'd really like to know conclusively what I have. I'm sick of the medical merry-go-round though--let's draw seven vials of blood, let's do an EMG, let's do a spinal tap, let's draw more blood, let's do another EMG, and more blood drawn. Nope, I'm done with that. I've been dealing with this since 2004, and I'm not going through anymore painful tests that reveal nothing conclusive.