.............Havnt napped like that in years. I sure hope the sleepyness wears off, im supposed to be taking this three times a day.
Susie, I take 50,000UI Drisdol each week. And yes, I have osteoperosis, but It has been under control since beginning the of feburary (confirmed). I will have to take the medication for the rest of my life as well as have my blood and urine measured and tested every other month to make sure my levels are where the should be. The Endocrinologist makes adjustments depending on the results, but he seems to like me to be between 45 - 50. I am at 0.0026 (0.0025) rate, so I have to consume alot to keep my levels up. I was told the bone density will be done "peroidically" but I never asked how long. I think only 6mo. or 1 per year??? Only hard part is the diet ...I cannot have caffiene. Thats hard beacuse I love soda pop, but also if the level is low he knows if I am fibbing about drinking soda pop But I dont mind the other precautions being life long. I will do just about anything to keep the boneloss (osteoperosis = absorption rate) and hypoparathyroidism under control.
The spinal deformity was classified as mild. Estimate at either around 26yrs OR 16yrs+ / puberity undiagnosed. I was progressing slowly, less 2% increases before the bone loss. Only damage normal for levoscoliosis "rotation on the vericle axis, narrowing of canal & disc space" . When the boneloss hit, it did damage to already damaged / rotated areas in my spine. What is "normal" for bone loss IE "degeneration, sclerosis/hardening, arthropy". All normal problems that accompany boneloss. The hypoparathyroidism came with problems of its own...my teeth, cataracts, tetany, parathesis, et al.
Now that the rate (boneloss - osteoperosis) and hypoparathyroidism are both stabalized everything should have slowed down... But that isnt whats happened. Instead the deformity has not only progressed to "moderate cobb angle in primary (lumbar)" but has also formed a entirley new secondary (thoratic). That is a +40* deg jump for my primary curve. It continues to progress rather rapidly despite all other factors being under control. My cervical is showing "possible" signs, but I don't want to worry about it right now. Like Doctor says we will face that hurdle when we get there. So, I am waiting on genetic / chromosonal testing. They had sought it a while ago, but the insurance company asked to recieve copys of my medical records and 45 days to make their decision on weather or not they will approve it. I am not sure if I will be a candidate for any counter measures against the curves progressions once the testing is done. But, my bones are and have been, stable for a few months now. So, that is one battle already won. Just need this testing done so they can start to make some long term planns for my spine care and stop progression. Currently, I am having a hard time with basic functions. Even the bottom of my ribbs are only a half inch from the tip of my right hip... kinda gives an idea how hard it is getting around. I am just plain worn out and exhausted to my very core.
They are concerned about the increases in the last month. She concerned that I have begun rotating towards the rear. I was worried she would want more X rays before I left, but I dont need to until I get back. ..frustraiting because I just had X Rays taken in March. Soon I wont even need my night light anymore.... just glow like a lightning bug before too long.
The nice thing is she made sure everything was taken care of (medicine, refills while out there, extra). She has added in baclofen to help counter the pain increase. I was hoping the medicine wouldnt be so bad, but I can see it will take me a bit to get used to... I never even thought about asking to be switched or try a new antidepressant. So much came up about my back and my hip rotation that I just completly forgot about it! Normally I take a list... just hate this kind of pain, it turns my brain stupid and I have a hard time functioning, let alone thinking logically. I wish something more could be done. But, after being "grilled" and "ganged up on" by nurse, doctor and my TRAITOR husband... I will try hard to keep from walking and "understand that I need to go slow and take it easy"........which is like asking a cricket to be quiet. argh, what ever.
Just wish the pain and progression would slow down already. Ive lost so much. It take all I have in me to do the smallest things. This is so frustraiting.
.....and of course my horrible vanity! Scared to death of how my husbands family will react when they see me!!!!! Gosh I sure hope I dont embarrass anyone.
Okay, obviously rambling a bit too much. Im sorry. Think I am gonna go get back on my heating pad. Pretend to not be so frustraited and scared.
Two roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
Chronic Pain Moderator