Thursday, February 9, 2012

Phase 2: Exploration

I wake up wondering, what will this day be like? Stress really aggravates my condition, so my drs say. At least the ones who seem to believe that I'm dealing with a medical condition & not just depressed. Can you imagine, I go to a dr because I'm in extreme pain and scared to death because I'm not sure why this is happening. Sure, I was told HEDS, but I didn't know much about it. The internet was not even up to speed as it is now. Isn't the dr supposed to know??  Not this fool (I can call him this now). A pompous man who tells me "Your depressed, you need more exercise, something with low impact should do you good." So, off I go. Now mind you, I'm a very active person, I work at a preschool/daycare and typically on my feet and moving all but 1 1/2-2 hrs a day. Even then I move around, but I get a little rest. And I went to college 3 nights a wk. At any rate, I join a gym and begin an aerobics class. Now this I really enjoy. I trip and stumble as I learn to follow the instructor, I didn't know my knees and ankles, not to mention my hip joints were all sliding around like crazy. Also the bouncing and jumping is tearing all of the supporting ligaments and tendons. I also give the treadmill and stationary bike some of my time. But boy was I increasing in pain each time, but I ignored it thinking everyone hurts when they first begin, don't they?
At that time, the insurance we had required I see a primary dr in order to get a referral to a specialist. The dr who gave me the idiotic instructions I no longer wanted to see. My pain was so intense and that man just wanted me to jump around more. The funny thing was I was very lean, I only weighed 125 lbs and I had a lot of muscle mass from picking kids up (imagine diaper change of 30 toddlers) and bending, squatting, walking, running all day long. You get the picture. So I changed to another primary dr. The next one was only slightly better. Thankfully he did send me to a rheumatologist who happened to be in the same bldg. I believe they referred patients to each other. Anyhow, this guy really listened.The first thing he told me was "You should have never done aerobics, you have irreparable damage to those joints that received impact." WOW!!!! That really hurt and felt good all at the same time. The pain I felt was not in my head, it was in my body!!
Where do I go from here? This dr helped me learn about my body and gave me clear direction of solutions. While I abused my body (exercised in an unhealthy way for my body), a funny thing happened. I began to pull away from being touched, especially when I was sleeping. Really weird huh? My poor husband thought for sure I was finished with him, even when I kept trying to reassure him. After all, what wife says "I love you, then says don't touch me?" It was very hard because I didn't understand why myself. As I spoke in great detail with my Rheum (he was a great listener, a true first with a dr), he solved this "great mystery" of the "no touch or I knock you out syndrome" I had developed. To this day it is one of the single most valuable piece of info I've been given. "Your brain is on overload. When you deal with chronic pain, constantly hurting, your brain can't process it all, so it overloads. Now your brain thinks that any info coming through your senses, all of them, your brain interprets as pain." That was a big "Ah ha" moment (as Oprah would say). "There is a simple and pain free solution." What, I wanted to shout. Instead I waited for him to continue, I knew he would if I was patient enough to let him get the next sentence out. "Anti-depressants." Oh know, I thought , another guy thinking it's all in my head, ran racing through my mind. Thankfully, before I could speak, he reassured me. You are not "clinically depressed" it's this class of medication that stops the circuits overloading." (Could he read my mind?) Ok, I"ll give it a try. (I suppose it worked as some approximately 16 years have passed since I began using them and won't stop until God gives my body an overhaul and a tune-up). I timidly asked him if he would explain this to my husband, I wasn't sure if I could get him to understand or believe me since I had been changing so rapidly right before his eyes. The response "Sure, bring him in, I won't charge you for an office visit or consultation fee".  I wanted to hug that man!! Could he be any kinder, I thought not. My husband went with me the next day he could arrange to be off at work. I truly believe it helped save our marriage. This dr went on to explain a few other medical issues I was having due to the HEDS. Let'see, Raynauds Syndrome (I can't tolerate extreme temperatures in my hands and feet, especially cold) Ummm, oh yes, my heart began this "taking off to chase something down" without the rest of my body going too. Another words, tachycardia, or really fast heart rate without physical exertion. Then there was fibromyalgia, overall body pain. Today there are commercials advertising medication for it. Back then it was a new and controversial diagnoses, although I still suffered with it even if some drs didn't want to accept this "new condition."
During this process is when I had to stop working (it about broke my heart, I loved being with children and considered myself to be one of the few people who was actually excited to get up each day and go to work) and begin the process of filing for disability benefits. The awesome thing was, my Rheum backed me up. The horrible thing was my primary dr wouldn't fill out the paperwork, no matter how many notes and recommendations the Rheum sent him!!
It was at this point that I "crashed." Social Security condescendingly told me I was   able to work part time so no benefits. It didn't happen, I couldn't work. When I went to the employment office I was able to see a lady who had health issues her self (she was in a wheelchair and was able to manage part time work, but not all of the time) that helped ones who needed an occupation shift. Since I had no idea of what kind of a job  I could do, she set me up for occupational testing. Big fancy words  for "let's see what kind of work we can get out of you." So, off I went. I was supposed to go for 2 weeks, 4 hours per day, just like a part-time job. To make this short and sweet, I made it 1 week with having to leave early 3 days, while I was stumbling around the building to get a drink of water (I was constantly thirsty) or to use the restroom. After the 2cnd day they told me I could bring a water bottle even though there policy was you had to use the water fountain. I really think they were scared to death I was going to fall and injure myself as I had to hold on to things to walk or lean towards the wall so I wouldn't fall. Yep, I was pretty wobbly. On the 4th day, I had to leave early because my heart rate was very high and I felt like I was going to pass out. (My wonderful primary dr hadn't prescribed any medicine, he thought I only had the one episode at his office).  Even though I kept a log of all of the episodes, I wasn't a doctor so I didn't know what I was talking about in his mind. By that time, I guess the staff at the testing facility were getting a feel for what I had going on, because on Friday when I felt so bad I laid my head on the table, I was told I could go home. The lady was so kind she told me that they were not supposed to tell anyone the outcome of the testing, but the person who made the final decisions happened to be there that day because a few people were at the end of their two weeks. The decision was that I could not be "re-trained" to work in another field, or learn a new occupation because although I did very well at following directions, being on time, and had many skills, I just did not have the stamina to work even part time. I did hug that woman as tears began rolling down my face.
Big lesson learned about the "new me," determination does not equal ability or capability. Nor does inability equal laziness. Got it!

Tuesday, February 7, 2012

Intro:Who am I?

That's a common question when your, lets say, 15,16 maybe a little younger or older. By my age people expect you to know "who you are." Unless you're in some mid-life crisis or some cataclysmic life altering  event. Truly though, who defines who you are? Or what defines you? I think it is the person of your inner core. The part that never changes, but can be built upon, shaped externally, and constantly developing a newer (and hopefully better) "you".
When I was young, I thought "I' was defined by the "hats" I wore. (Although at the time I didn't know this had a name). Daughter, student, teacher, & friend. When the "hats" were added to, I also became wife, then mother. You get the picture. The thing is, when I could no longer "wear" a hat, whether by choice or forced submission, I had a hard time defining "me".
I believe much of my loss as to self definition came because the way I viewed myself changed so rapidly, without warning (so I thought), that it threw me totally off balance. Then I was, LOST. Although I searched rapidly to find that one sure footed place, the one that didn't shift and move, it alluded me. I slid rapidly down the slope of the unknown, being tested, refined, re-formed if you will.
What happened, you may wonder.Such a life altering change of perception came with the full impact of a disorder I had just recently found out I had. It wasn't the knowledge that this shaped my genetic make-up in of itself, but rather the impact of my abilities, capabilities, & functioning. I found myself, miss A type personality, perfectionist, capable of all that I set my mind to, BETRAYED! Yes, this genetic flaw, this one small falter in my DNA, took me down.
Looking back, I can see the warning signs that I didn't know were there. At the time though, they were small whispers floating in the wind. Barely there but gnawing at the edges of my mind. (That hurts) I'm strong, I'm young. (I'm tired) I can push through it. Sleep more later. (I don't understand) Study harder. Concentrate.
On and on the argument went until CRASH!! I would ask my Mother "when will I know I can't work anymore?" She would say "if you have to ask if you've crashed, then you haven't yet." I didn't "get it" until it happened. There I was, losing it all. I tried SO HARD, I thought that through effort I could pull it all together as I had before. My body said "NO!" I said, come on just a little bit more, we'll go this way instead." My body said "no!" Oh, come on already, it can't be that bad. My body screamed at me, no more gentle nudges, no more hints, just shut down.
Now, the average person might understand this as, maybe I need a vacation, or perhaps let me change to a career that's less demanding. This just wasn't the case for me. I had tried those things (obviously they failed to have lasting benefit).
How bad could it be? You may ask, I asked. WHEN you get lost driving home the way you always drove home, and have a panic attack bad. WHEN the effort of getting out of bed makes you break out in a sweat.  WHEN your heart begins to race and pound in your chest until the room begins to spin because you dared to walk across the room. WHEN you get locked in the bedroom because you don't have the strength to turn the doorknob. WHEN you loose your voice and have to whisper. WHEN your husband must feed you because your hand shakes so badly you can't get your food into your mouth. WHEN you can only eat Jello because you can't swallow food because your throat won't work. So, that is why I say WHEN I CRASHED.
So, that was my true intro to HEDS or, Hypermobile Ehlers- Danlos Synrome. A connective tissue disorder, I don't make enough collage. You know the stuff your body makes to hold things together. Then became my journey. Who am I?