Still suffering

Jen

Posted 2007-07-15

Hi there! I originally posted my story on June 8th of 2003; I then followed with an update on February 27th of 2005; well, here I am, with another update in July of 2007, 2 years from my update, 4 years from my original posting. If you all read my story under 'asti 96', you know that I have suffered with coccyx pain since 2001. In 2002, I had a portion of coccyx removed, which was not successful in eradicating the pain I suffered. Although the pain from the curvature has gone, the removal of these bones has contributed to misalignment of my hip, SI joints, and the severe infection I had suffered after surgery has created such thick scar tissue over the surgery site that to sit is quite painful.

Unfortunately, I am sad to report that I have still yet to find the right doctor, the right treatment, the right medicine, to allow me to live pain-free- or, at the very least, without this pain. It has been 6 years living with this pain and I am beyond feeling defeated. My doctor that continues to inject my SI joints every 3-4 months, and my rheumatologist, have asked me to acknowledge the fact that my condition is what it is, and that they can manage with pain medications at this point, but it will only get worse as I age. It is a harsh reality I force myself to acknowledge at 35 years of age- but it is reality all the same.

So, I've resided to my fate and I accept it, however, that doesn't mean that I do not occasionally delve into the self-pity party I have going on for myself once in awhile, or from visiting the 'Why me?' club here and there. I dream of a good night's sleep, one that I sleep for more than 5 hours at a time; I do have some of those nights...as I 'age' as the doctors would put it; but more than 4 hours of sleep comes at a high price; the reward for sleeping past my body's attempt at waking me for pain-relief---an even greater pain, one that radiates down my leg, to my toes, with such intensity, that I limp to the sink in my kitchen for that cup of water to take with my pain med, and one that lingers beyond an hour after taking that pain medicine, only to keep my awake just in time to have to get up and go to work. I used to be a 'belly sleeper'---I always slept on my stomach, with my arm tucked under my pillow, one leg gently upwards---that is just a memory now- I have no other way to sleep other than on my side- no more sleeping on my stomach and on my back is out of the question- so I go through great lengths to fall asleep on my side- on the now sore, arthritic hip joints that are sick of taking all of the weight on them each evening; I even have resorted to stealing my sons' beanbag pillows they got for Christmas- one gets tucked behind the butt- right around my tailbone area, one between the legs and one tucked in the front. It's kind of funny if you see the ritual I go through each evening- but it is an adaptation I have made in my life to 'acknowledge' what life is for me.

For all of you still searching, for those of you just starting this journey- carry on. Share with all of us- as your stories bring one of hope, one of friendship....it allows us to feel that we're not crazy- our pain does exist- and someday there will be an answer for us- someday we will be able to fully enjoy our children, our spouses- our lives. My dream is to enjoy the waterslides with my autistic son someday soon- he is now 8 years old- and I dream of when I can really enjoy life through his eyes, instead of through my limitations.

For all of you who have contacted me over these long 6 years- it is your kindness and caring that allows me to be hopeful!

Take care everyone. Please feel free to contact me at any time!

Jen

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