I have not been writing this last year or so very much. My pain has been extremely difficult to control, my weight continues to drop, my fatigue levels are extreme, and my stress levels at work (not because OF my work but rather the situations surrounding the work) were extreme.
My world has been fairly bleak, not depressing really, but simply one extreme of pain to another extreme of pain while trying to maintain enough functionality to remain working. My own stubborn refusal to stop working along with a sense of obligation to the people who kept me with insurance and employed during these last few years kept me going, often against medical advice and the advice of family.
My employer removed this obstacle for me during a downsizing move a couple of weeks ago. I, along with seven others, was "downsized" just after they had upsized the company with a hiring spree. The company is a young company (having bought the company I used to work for last year) and is experiencing the same growing pains many companies do in the first five years of existence. I am still doing work for them as contract labor, so bless their hearts I suppose they really didn't want to get rid of me but this makes it even more difficult for me to decide what to do about my health situation.
Next week I see my PCP to talk about disability, short term disability, and whether or not I qualify for SSD. He told me last year when my bladder quit working correctly that I needed to quit and go on disability. It is just hard to do even when essentially forced into doing it. If I continue on with part time contract work, I am not sure if I will make enough to afford COBRA. If I keep my work hours down where they really should be I am not certain if they will want to keep me on as contract. If I make too much money or work too many hours I am "gainfully employed" and will not qualify for disability. I do not have any long term disability. Huge sigh.
The Headache continues it's cycle it has maintained since I lost so much weight last year: one to two times a month I am forced to go to the ER for extreme exacerbations of pain. The stimulator helps me on a daily basis, however I never have a day when I am pain free. The physical aspects of The Headache continue even if the pain is not as large a component as it was - the stimulator keeps it down most of the day at a 4-5. Some days like today it gets back up in the 7-9 range and my eyes get wacky and the facial pain gets unbearable,but at least it is not every hour of every day like it was before the stimulator was installed. Using pain medication is still an issue, so if I take opiate based pain relieve more than two days in a row The Headache decides it will pitch a fit and then I am in trouble big time.
The Stomach is a problem, as the pain is constant and severe now. I eat a cup or so of food a day and try to eat a real meal every third or fourth day. I hope that my pancreas function will continue to decrease as the literature states eventually the pain may go away. I was told by my new local GI doc that my pain is not now from bacterial overgrowth but probably from the other GI issues like the chronic pancreatitis and inflammatory gastritis I have.
My pelvic pain really increased last fall after travelling - about the same time the bladder dysfunction became permanent. It is difficult to describe and something I felt I just could not explain to my new bosses. They showed a distinct dislike for my open communication about my illnesses; I really am not sure why unless they knew from the beginning my position was going to be eliminated and just did not want to know very much about me personally or perhaps if they knew they felt they would need to try to accommodate my physical needs and just did not have the means or desire to do so. I guess since I am now self employed sort of I can decide how long I have to sit stand etc for myself!!! WooHOO!?? The problem being is that standing sitting or lying down - none of it is comfortable.
Falls are becoming more frequent. I have fallen and seriously injured myself three times this year, twice to the point of knocking myself out. I have fallen less severely several times more. I fear falling, and use a cane to assist with balance. This is something that is difficult to explain. I don't need to use a cane because of extreme weakness or an altered gait - I use one to help me not fall as often, and to distribute my weight so not quite so much is centered in my pelvic region. My reflexes are somewhat flat or absent in my feet ankles and knees so I don't respond well when I do trip.
Fatigue and sleepiness are huge issues. I have almost given up driving. I am dangerous to myself and others because I fall asleep driving. I think I am alert and the next thing I know I am asleep with my eyes open hallucinating cat faces on the back of semi trucks. My family tried to help and drive me to work but that didn't last - they all have too many problems of their own. At least as contract I don't feel as obligated to go into the office as often. I can work around necessary nap times and daytime sleepiness. Some of this is the medication, some if it is the nutritional problems I have, some of it is the lack of sleep from uncontrolled pain, some of it is the sleepiness that increased after installation of the stimulator.
Sciatic and other nerve pain in my lower spine and legs has gotten worse. My feet cramp so badly it can be difficult to put on shoes and moving at night in my sleep can set off an hour of charley horses and foot spasms. I have difficulty standing for very long, and sitting for very long. I get the "jiggles" and can't keep my legs from dancing if I am on them too much.
From the falls my spine is incredibly painful and I hurt enough it takes effort to sit upright and put the pressure of gravity on my back. That seems silly but that is how it feels. Just the weight of my head on my back is enough to make me dread getting up in the morning. I was able to avoid neck surgery last spring by seeing a great physical therapist, but the last two falls did not help my back situation out any. Not sure if I slipped a disk or just pushed something out of the way.
My bowel issues fluctuate from not working at all to working too well and too fast. I am not sure how this will work out, since contrary to what the doctors told me last summer, the better I control my pain the less problems I have with spasms. Go figure.
The one problem that is very hard to face from the botched radiation therapy (and guys feel free to stop reading here - this is girl talk) is the vaginal atrophy. Not only is often painful on top of the other pudendal nerve related pelvic pain, I am told by my gynecologist that the end result is that I will end up without a vagina. Now, I don't know how a male doctor would feel if his treatment unintentionally atrophied painfully a patient's penis off and away, but apparently they think I should take the loss of female functionality in stride. Just another fun filled fact of radiation overdosage. I guess since I am not using it at the moment, the thought is I won't miss it?? And guess what, because it comes from radiation damage I am told there is little or nothing that can be done. Estrogen cream may slow it down a little bit. Otherwise I am out of luck.
My bladder dysfunction continues. My urologist wanted me to get another nerve stimulator implant but I have procrastinated. With all the pelvic pain I have the thought of actually trialing a stimulator in that region just makes me cringe. I just can't face it. It is one thing too many. However I am having a constant struggle with bladder infections because the lack of good sensation makes me at higher risk with the cathertization I must do. Another worry if I lose insurance. My catheter supplies are several hundred dollars a month, and without this step I am told I am a candidate for kidney failure from back pressure from the bladder and urethra contraction issues.
On the upside, my mother is doing a little better healthwise but less well with other functionality. Last spring the doctor wanted her to go on hospice since she really failed fast after having the flu. I worked very hard getting her to eat and her energy levels back, and got the OK last summer from our doctor that hospice could be delayed for awhile yet. I worry that if I go down completely healthwise what will happen with Mom. Some days it is very difficult to cook for her since not only do I not have an appetite, but the smell of cooking can be overwhelmingly nauseating. Maybe if I was a better cook I wouldn't have this problem!!!
So here I am in the wee hours of the morning, undermedicated, in pain so many different ways to Sunday it is unbelievable, wondering how I will be able to afford COBRA, wondering if I get disability what I will do for healthcare for the year or so it takes to get Medicare, wondering if I will be able to continue to earn any money, wondering what will happen when I can't work, wondering what will happen if I keep trying to work, knowing some of what is going to happen regardless of all the what ifs.
I keep repeating the old saw "How much wood would a woodchuck chuck if a woodchuck could chuck wood??" I'm a woodchuck and the wood and the wood pile at the very same time. Very Zen of me I think. I'm my own sound of one hand clapping these days!!! Ah well, I will know these secrets in my dreams - just hoping those dreams won't come on me as I am driving down the interstate and the big truck in front of me turns into a giant woodchuck!!!
Hoping everyone has a pain free weekend. I hope to start blogging more frequently and keep up with my blogging friends better. I have been too self absorbed this last year or so, and that is not a healthy frame of mind for me. Better things are on the horizon and a lot more wood to chuck!!!
