Wednesday, July 31, 2013

**NSFW language** Untitled because I apparently have run out of clever titles....

I noticed tonight that I really do miss writing these posts, and I've attempted several times, lately, to rectify that. 
I open the window for a new post and get ready to type.... 
And my body says "uumm... No." (*more on this in a moment)
Or I have the words floating around in my brain but when i go to right them down my brain says "see ya later, alligator" and poof! It's all gone.
But tonight I think I may finally have it together enough to write a post, finish a post, and actually post it. *crossing fingers.... well, trying to*

Ok, so I log on here tonight and start looking at the few drafts I had started. Here is what I saw: 
  • an empty post entitled 'Being fat is killing me.' with no entry.
  • a post in which the only words are "Today I am".
  • the following entry in BLUE...*


I hate days like today. When my mind is so stimulated and active but my body does NOT want to cooperate. At all. I am not just sore and tired. I am exhausted and every cell of my body feels like it has been run over by a truck. I wish that I could just sleep my way through these episodes. But in this state it hurts to even try to sleep. It hurts just being. And my fingers feel fat and fumbly. I am weak all over, my muscles shake just trying to do the simplest of tasks. My arms and legs feel like they are being weighed down with those lead aprons you see in X-ray rooms. I see flashes of bright light in my peripheral vision, which indicates that I am headed for a migraine. The weakness and muscle fatigue is probably my least favorite part. Writing this, I am laying in bed using my iPad on a cushioned lap desk. Sounds pretty comfy, right? Yup. Except, my arms are so weak that I have to take a break from typing after almost every sentence. And they are very shaky as I try to type. Trembly. I have the sensation of adrenaline rushing through my arms, sometimes legs, too. But I am not frightened or having a panic attack or feeling any of that in my torso as one would expect if it were - palpitations chest pain, tightened guts, sweats - none of that. It's only in my limbs. It's a burning type of sensation and is sometimes accompanied by paresthesia (pins and needles sensation). Tripling my dosage of Neurontin has helped lessen the frequency and duration of these episodes but not taken them away completely. And between all the meds I take we still have not come up with adequate pain control.

It sucks.

I wish I could give you my body for a day so you could feel what I feel. Who am I talking to, you may be wondering. Well, everyone, I suppose. The doctors who don't want to write prescriptions for pain medication, the doctors who don't quite believe in fibromyalgia. (Neither does spell-check, apparently. *gives the finger to spell-check*) My friends and relatives who don't understand what it is like to struggle with chronic pain and fatigue. The people who stare and scowl, because I am obviously too young to have any health problems so why do I need handicapped parking? Why do I only use a cane sometimes? Why could I walk all over creation last weekend but can barely get out of bed today? I wish you could really know how fucking hard it is to be trapped in a body that doesn't do what you want it to. Or does things you DON'T want it to. Like flailing arms and legs. Knees that buckle and give out without warning. Hands that drop things, eyes that sometimes get too blurry to see straight, or feel like there's


We now return you to your regularly scheduled program.

Um, what? No really, McMuffin?? WhereTF did that come from? How did I just drop off in mid rant?? Or was I saying that I felt like a McMuffin? Did I mean I wanted to eat a McMuffin, or that I wanted to be a McMuffin? O-o 
Things that make you go hmmm.... 
And the other 2 drafts, well, it's not too hard to figure out what was on my mind. Feeling trapped in a sick body. being afraid, feeling loss of control, wondering what my purpose is, why I am here, why I should hang in there. Sometimes it really is a an immense struggle. And physical and mental health really impact each other. When your body hurts and hurts and hurts, eventually your mind hurts along with it. And vice versa.

At least it's true for me. In fact, I had a real light bulb moment today about my mental health. I realized that I really do have a distinct cyclic pattern where I'm good for about a year and then I start going downhill. This is usually followed by a few years of roller-coaster-like fluctuations in depression/anxiety/PTSD symptoms, as well as in physical symptoms. I wonder if my therapist has noticed this....

Anyway, these days I am learning to eat healthier, seeing a nutritionist, and have joined a weight management program at a local hospital. I am learning to exercise. I mean, I know how to exercise, I just never cared for it. When I was a kid it was different. I played and ran around, played soccer, did gymnastics and danced, roller skated, rode a bike, skate-boarded, and swam every chance I got. 
Enter: Puberty.
And that's when my body said "Fuck You" very loudly and the visits to the various doctors began. And ever since then my body hurts. All the time. There is never a time (short of the few times I've been hospitalized and given morphine) when I do not hurt at all. And I realize that part of this is my age. I'm almost 40, things are starting to break down. I get it. But it's more than that. Years of neglect and abuse is now catching up with me... on top of the chronic pain I've been in for the last 30 years. So now I am eating differently, learning to move, and trying to find my best self every day. By that I mean that every day is a new day to remind myself that I matter and I deserve to be taken care of properly. It's hard. Very hard. When you grow up feeling worthless, with no sense of worth or purpose, how do you teach it to yourself as an adult? I never really had a good role model in this area. Everyone around me struggled with food in one manner or another. So now I am having to teach myself and I have to say I am a difficult student. LOL But I'm keeping at it and making strides. My starting weight last holiday season (2012) was 253 lbs. which I believe is my heaviest weight ever. Recorded, at least. I am now down to the early-to-mid-230's (accounting for fluctuation). My next big goal is to break 230. After that 200. And so on. 
And I've hit the wall.... I guess I'm done writing for tonight.


Monday, March 25, 2013

My body is a wonderland...

I don't think John Mayer was singing about me, though. I wonder WTF is this pain? I wonder if I'll ever actually get a diagnosis. I wonder if that diagnosis will be correct. And now we get to add PCOS flare-ups to the current symptomatology... I currently have a cyst on the right ovary that was 2+ cm a few days ago. I thought it was shrinking but tonight the pain has gotten so much worse. Hence, the blogging-instead-of-sleeping.
I did, however, have a wonderful visit with Stepmom today, something we don't do nearly often enough. It was nice to be able to relax and just be, not have to try to pretend that I feel great or try to convince anyone that I don't feel great or feel guilty about it. I almost didn't recognize when it happened because I'm so used to sticking myself in those other situations, but there it was. She came to pick me up and she asked the obligatory "How are you?" and I decided to be real.
"I'm having a medium day."
OMG I said it out loud, it's hanging out there and I can't take it back.
"Well, hey, medium is better than bad, right?" she smiles. And then so do I.
"Absolutely," I say, nodding.
And when we walked around a small shopping plaza after lunch she let me set the pace. I was slow but we walked around for over an hour! By the end of it, of course, I was ready for pain meds and a nap, but I did it. And I did it without giving any thought to what others may be thinking. I was able to just be.

Wednesday, March 6, 2013

I'm too tired for this blog...

I know those weren't the words that Right Said Fred actually sang, but hey, creative license. Hello world! It's been a while since I've written and I've been really feeling the urge to write but have not had the energy until now. I am on the medical and emotional merry-go-round again. Or maybe it's the roller coaster. I don't know, some kind of big crazy-moving-type-ride-thingy that makes you dizzy and wish you could step off but you can't because you are not in control of the situation. One of those.

Since entering grad school a year and a half ago I  slowly started developing an increase in symptoms (both medical and mental health related). My fibromyalgia would flare up, fibrofog would set in and I'd get tired studying and have to set aside time for naps. I was achy, sore, tired, the usual. Par for the course with fibro. My eating wasn't the best but I was keeping my sugar in a moderately healthy range. But then in fall semester 2012 my mother underwent major spinal surgery. This was her fourth. We expected a long recuperation period, up to a year is not unreasonable with these types of situations. The 13 hour surgery went well, they did hit a few minor complications and she had to be kept in a medically induced coma for 3 days, but hey, she needed the rest, amiright? She came out of that fabulously, except the part they didn't tell us at first was that her spinal fluid was leaking, and add to that the insane amount of pain medication they had to keep her on, and, well, let's just say we were all pretty frightened when she was having delusions of aliens probing her and the government spying on her through the TV remote. She wanted us to collect all the tissues, pill cups, and anything else the nurses or doctors touched, because it was "evidence". Scary and amusing all at once.

Now, you must remember that the hospital where this all went down is 2 hours away from where we live. I am my mom's health care proxy, and I am also the one with the most flexible schedule among my siblings (and the oldest AND the only female, so it usually falls to me anyway), so I stayed with her the whole 2 weeks she was in the hospital, minus the day I had to go home to put one of my cats to sleep - he got sick very quickly and it was just awful timing all around.... So back to the hospital. I slept in waiting areas, conference rooms, and a recliner in her room when possible. A couple of times my mom's cousin came and picked me up and brought me back to his house for a home cooked meal and good night's rest. I feel very blessed to have such caring family members (few and far between in this family). My brothers came up when they could and we would take shifts. When she was transferred to rehab in her home town we were all very relieved. Her siblings and parents could visit, I could go home, visit her in the day, and not worry and maybe finally relax. Oh, wait. Family. Ah yes the ties that bind us....

So once again I was in charge of fielding out visitors who would upset her (basically 80% of her relatives) and I had my first real confrontation with Uncle Asshole. I stood up to him, something I had been dreaming of for decades. Yes indeed, I yelled at him, I swore at him, I told him he was a piece of - well, you get the idea. But having to deal with seeing him and being around him and protect my mother from him, and from my grandparents (who do not mean harm but they definitely are not sources of support what with Alzheimer's and everything settling in) it was A LOT. And I felt myself slipping further into fibro hell, and sugar hell, and migraine hell, and every other kind of hell. 

By the time winter break came, I needed it soooo bad. I was sick for weeks... cold-flu season hit me HARD and I slept for 2 weeks... and when I woke up, I went back and slept some more. And I kept sleeping. 12, 15, sometimes 18 hours a day. Sometimes I'd have insomnia all night with my body fighting in exhaustion (please, PLEASE can't we just go to bed? we are tiredddddd!) but no, my mind wouldn't let me rest. I was agitated. (Still am.) I was behind in school work so I thought I'd be able to catch up over break - ha! Sometimes I was awake but could not focus enough to study. I found myself reading the same paragraphs over and over and not comprehending what it said. I felt like it was a foreign language. And it didn't get better once the new semester started. I am half way through the Spring semester and I have fallen so behind that I am scared I won't be able to bounce back. I have not yet gone back to my internship (which I was loving and I miss) because I am still battling severe fatigue every day.

Some days, the good days, I am good for about 6 hours. I may have to break that up into 2 or 3 hours at a time with rest periods in between, but I can get a few things done if I persist. On a bad day, well, some days I can't get out of bed. Those days are thankfully getting fewer and further between. Some days it's all I can do to get to a doctor's appointment. And there have been a lot of those lately. I've had so much blood drawn that I'm starting to reflexively offer my arm up to anyone in scrubs. Probably not the best idea. At first they thought it was my thyroid. Then they said it wasn't. Then more tests. I tested positive for ANA (1:1600), which pointed to something autoimmune. There was some talk of possible Lupus, Scleroderma, Rheumatoid arthritis. Off to the specialist for more poking and blood drawn. At this point I am told that the ANA numbers are meaningless. So why do they have tests for them??? She had no good answer for me on this. But she did have MORE tests. I get the phone call today - everything is within normal range. Except my sed rate, which means there is inflammation somewhere in the body but since everything else turned up "normal" they don't know where. So, I fear we are back at square one. I have crippling fatigue, weird rashes/hives/swollen things (eyes, lips) that pop up out of nowhere, nerve pain/discomfort in my legs to a degree that I have never before experienced, shortness of breath with little activity (making the bed puts me IN the bed), and the return of migraine and excruciating cluster headaches. Oh, and finger twitches. But the finger twitches may be totally unrelated. Did I forget to mention that I also fell and broke my wrist during this whole ordeal? The wrist is healed now but the fingers on that hand are twitchy. Yay. 

And I took my sweet senior cat to the vet for a checkup today and was told he may have oral melanoma and needs surgery plus the removal of his canines which are very infected. I feel like the world's worst cat-mom. I know I've had a lot going on but I feel like I've neglected him. I will say though, he has adjusted very well to being the only cat after losing his companion. Probably because he was here first for about 5 or 6 years, before we brought home the other one. Anyway, I think that's enough purging for one night. I am impressed that I finally finished this post - it only took me a month! What can I accomplish tomorrow? Whatever it is, I can do eeeet!!!!!!!!!!