Living life fluidly

It's hard to write the way I do when I'm not happy. I can't put my understanding spin on things. I'm pretty miserable right now. At the same time I'm not miserable or unhappy because I know I can learn a lot from all I've gone through in the past year in Seattle. I get to see just how good St. Louisans have it. One way is that there are some great and healthy options at each grocery store in St. Louis while King County/Seattle makes me drive miles to get just one thing at a store...they Really like locals so you find more from the area than items one might actually want.

And once again I have to run out the door so I have to stop with the thoughts stuck in my head. This is why I haven't posted anything in months. I think about it daily, but part of my misery is at home where I'm not appreciated. It's been a very interesting look at life. Rich with learning opportunities.

Muscles, pain, twitching, but I have hope

My muscles are quick to find exhaustion today. It's better to have exhaustion than the extreme pain I had for the past two weeks. It was the kind of pain that makes me jump and tense up, never to know how long it will last. Then for the last three days, I had violent twitches as if I had Tourette's. I couldn't get to sleep at night because I couldn't stop twitching. It would have looked like I was waking up from the kind of dream where you think you're falling and you jump awake, but the twitches occurred seconds to minutes apart.

I still have twitches here and there, but they are not noticeable to other people and they are the kind I am used to. I feel twitches in my body all day long and I have for decades. I don't know if it's normal or not, but I have a feeling the amount I feel is not normal and I think it's one of the reasons my muscles feel fatigue. I also still have painful muscle spasms, but they are much less painful.

I'm not comfortable going far from the house since I don't know when I will be too tired to function, if I struggle to function then I struggle to get home. We have had few clouds and lots of sun so I spend a lot of time right outside the front door on a bench, taking advantage of sunlight while writing and drawing or reading. I hope I get to find enough energy to meet people. I need to be able to put gas in my tank first. When I feel comforted in knowing my car won't run out of gas then I will be much more comfortable leaving the house. Especially now that the weather is getting warmer...I don't deal with heat very well. My body seems to have the hardest time keeping from overheating. This will be an interesting spring. I am honestly apprehensive of summer.

It's a slow way up, but I feel like I am finally on the way out of not having food for days and weeks and I dream of having the medicine and healthcare that I need for the rest of my life, however long it will be. I like having the meds that work and I like having them on a regular basis.

Lead Poisoning?

I wonder if lead poisoning has anything (or everything) to do with the health issues that face us today. I think this could logically be a global concept.

http://en.wikipedia.org/wiki/Lead_poisoning

I'm so curious that I think I will ask to have my blood lead level checked. Sounds fun to me! (But I don't get scared easily.)

New Again

I am in a lot of pain. That spot that has bothered me off and on for 13 years is wrenching awake. I can't wait to have that MRI (on dec 10th). I'm sure I will have to have surgery again, I just wonder what the reason will be this time. If pregnancy is supposed to suppress and eliminate endometriosis and my pregnancy 12 yrs ago did not stop the little ball of pain ("ball" as in "lump" that my son would hit and kick as he danced inside me). I hope I get to see the MRI. I need to see if I can get access to my medical records so I can see the images when they are ready. They are ready right away, but I want my own set. Medical science fascinates me and I have a lot of symptoms that don't make sense. I think it's a good thing that I like to figure things out. Everything I have gone through could be a bad thing, but it's not bad to me. My mom threw away the xray of my broken leg, my old gynecologist wouldn't take pictures or record the two laparoscopies he did...I want something!

This is why I'm in WA...to figure out what this thing is that afflicts me. I didn't know how soon it would come back so it looks like I get to work on everything that's wrong with me at once. :)

Walking Lucidly

I feel weird today. Yesterday I couldn't stay awake. It's been a while since I have dealt with not being able to stay awake...a while for me means I went at least a month without passing out wherever I rest my head. I felt fine for an hour after waking up but then I moved around. I always have to wait for my joints and muscles to wake up to have mobility. My head feels funny, My body hurts...that's normal...but I have weird tingly sensations in my arms and legs that start out broad and end at one point, Now I feel like I'm going to throw up. What the hell is wrong with me.

One of my theories on medicine and my body is that it metabolizes it too quickly at times. Now could be one of those times. Do I need more of the medication for a week or two each month? I've always been like this. I've always had times that any given medicine didn't feel like it was working but it kicks back in after a week or two or I have to go up a dose.

Or am I having a stroke. I'm able to speak and type so that's simply a joke that may not be received as such by readers.

I sure do feel weird. I have to kind of catch my breath when it's too weird and icky.

Frost And Fog For A Mid Day Appointment

Everything was frosty this morning. Leaves were crunchy underfoot and heavy with ice to fall to the ground. The fall season is definitely here. The picture above is one of the spider webs in the yard frosted over.

I have been saying for years that I need an MRI of my waist, but I have learned that doctors do not like educated patients. Today I was told I probably have an incorrect diagnosis of endometriosis, although it's been removed twice therefore I am afflicted with it, but something else is going on so we need an MRI. Thank you! Why do doctors have to see me in pain rather than talk with me about my findings? I go to the doctor's office when I'm not in pain so I know I can get back home, but they don't believe me. Words aren't enough. It's not fair to me, though, to have to be in so much pain. How am I going to get to a doctor when I'm in pain? I did it once a few years ago to show the doctor some of what I go through, no pain medicine for the last bout of endometriosis that was removed, and I screamed and cried the whole way. I drive a stick shift and it hurts to move my legs. If I didn't stay hunched over, I hurt worse. Imagine trying to drive while hunched over and not being able to use your legs without causing pain in your abdomen. I'm not quite back to that yet, but it's coming.

Medicine, Doctors, Drive Drive Drive

I have heard of shots in trigger points, but I didn't know it is a shot of novacaine. I also didn't realize that I can't see just one or two doctors. I have to drive all over the place for the various treatments. What happened to going to one place? Washington (state) is so far kind of hard to figure out. Without money, it's been impossible. Well, maybe just annoying, but not impossible. I ran out of gas on the way to one appointment, after another appointment with a different type of doctor I got a parking ticket, food is too expensive so I pack granola bars and almonds and hope I make it home without feeling dizzy.

Why is a shot of novacaine here and there (but not everywhere it hurts) "okay" but taking vicodin that will take care of all the aches and pains isn't okay? And why is taking medicine other than opiates fine? If I take Lyrica, tramadol (which I had to stop because of an interaction with zoloft), and cymbalta (awaiting approval), which have different effects and side effects and if I ever need to stop taking one of these, I will go through serious withdrawal symptoms, but to stop taking an opiate feels kind of icky for 4 days. Vicodin was so much nicer on my body than the stuff I have to take now. Vicodin has only one side effect I don't like which is sleepiness and that goes away after a while. It even helped my IBS. My colon rarely bothers me when I take vicodin regularly.

I still think there is something to adderall for fibromyalgia. I don't know if Concerta or Vyvanse do the same thing. With adderall I ate less sugary things and more healthy things (there is a theory that yeast within the body, fed by sugar, may cause some of the fibromyalgia symptoms), my brain functioned perfectly and I was able to keep myself in a calm state when others around me might not be so calm (staying calm is Really hard in part or whole because of the pain I have to function with), and finally I moved more. I had the energy to move about doing chores or taking a walk. I was building myself back up to something that can work within society. I felt almost normal and I was working off of the zoloft (which I need to deal with the stress I feel by not being able to function properly to be a part of society). I also felt less pain and ibuprofen actually worked! Ibuprofen has been useless before and after I took adderall.

I am doing better each week with Lyrica. I'm just scared that when/if I don't have insurance any more that I will have to stop taking it, hopefully I can step down and not do it abruptly which will send me right back down to laying in bed all day unable to function. I am also worried about finding work, getting insurance through a job and having to find all new doctors. Medical professional don't treat me very well. I am building repertoire with several doctors (nurse practitioners and anyone who treats me is henceforth going to be part of the term "doctor") who either begin learning about me as if this is the first time they have heard of FM and the symptoms I deal with on purpose (which doesn't feel good to be treated this way, but it also doesn't feel good to be treated as if I am the one who knows nothing and they know it all and my thoughts don't need to even be heard) so maybe it's the norm in this state to start out cold toward patients, but it's maddening and I don't want to go through it any more. If I can't work with good doctors then I want to keep working with the system I have in place now. I'm not sure it's working out well since I have to remember so much for each doctor I see (doctor still means medical personnel in general) as well as pharmacists, if I had one doctor then I would be comfortable with the route to and from their office, I would have fewer things around me to adjust to each time I drive there and back making details about the appointment(s) easier to remember, I would use less gas therefore stressing less about breaking down, I wouldn't use so many resources within my body to function and I would need to worry less about food because I wouldn't need as much. Instead, I have to go to a pain center, I might be done seeing the behavioral specialist who helps to navigate the system within the medical groups, I have a gynecologist (understandable), a therapist, a psychiatrist, and the primary care office. I have only been to each place once or twice except for the primary office so I have more meetings and adjustments to make but this is a lot of driving. Traffic here sUcks. It can take 2.5 hours to get home when the trip should take an hour or less.

I can't wait until I am all better and I am able to work again. Because the process has taken so long...I am back where I was physically in 2006, I worked hard to get past the weird hypoglycemic feelings and I continued exercising for a couple more years until the endometriosis took over. That set me back, but a few years later the adderall helped me get back to being me. I'm tired of this back and forth and the way I have been treated throughout. I would love to be treated as an equal. When I think of respect, I think of treating someone as if I am dealing with myself and I have learned to be very kind to me. I don't have to know what's going on and I don't have to have everything fixed and finished. I need help dealing with people that treat life as if there is something wrong and everything needs to be fixed. If I die tomorrow, why would I want my last day to be filled with stress?

So I have more appointments this month and some already set for next month therefore more medicine to come. Good thing I didn't expect to be fixed by the end of this year :~)

If something stresses you out, give it to the wind.