Posted 4/10/2014 8:35 AM (GMT -6)
I do feel you and I are like peas in the same pod. Yes we ail from different things for different reasons, but the common denominator of severe chronic pain and fatigue unite us. As far as physical suffering, pretty sure you are #1 in the CP/Lupus group, and I may be #1 here at the PC side, as far as all the pain and fatigue part. Why were we so lucky? lol.
When you write here, I know that you 100% understand and relate to what I write, because you, yourself, suffer equally.
Don't worry, not planning on giving up or checking out any time soon. But others need to understand, that one can only portray so much of a "positive" attitude when hurting so bad for so long. You can only put on a happy face for short periods of time on a daily basis.
For those that don't believe, or think people like us aren't tough enough, or need to be tougher, I challenge any person, to trade places for just 24 hours, and live in either of our bodies. It would make a believer out of them.
I am here for you too, never forget that.
This morning, I woke up in severe bone pain, covering both hips, both upper legs, and both knees. I am finding it harder and harder to find a comfortable sleeping position. I can't sleep on my back, can't sleep on my right side because of the stoma, so that leaves me with sleeping on my left side. But the pressure of my bones touching bones has become worse with all the weight loss.
Speaking of that, I lost 3 pounds from yesterday morning to now. I don't even see how its possible. I had two big meals (for me) yesterday, including a full steak dinner. I am now at the lowest weight I have been at since I was 28 years old.
I have this very expensive custom Italian business suit, that I bought about 20 years ago. I could barely fit it when it was made, I wore it one time to a Christmas party, then never again. Over the years, I tried on the pants, and it was hopeless, only reason I didn't give it away or toss it, because it cost so much money at the time (over 1,000 bucks). Long story short, I recently pulled it out, tried on the pants, not only do they fit, they are almost too loose! I never thought I would see the day those suit pants would fit.
But when I talked to the doctor yesterday, he only viewed the weight loss as a good thing, and he said, "most doctors would be happy with it". Some how, that didn't sound like a good answer. Yes, less weight is generally more healthy, I get that part. But to be losing it so fast. Not like I am on a starvation diet and its sure not from exercise. He gave me a weight number, and said though, he wouldn't be comfortable if I ever went below that mark. I told him, I am not purposely losing weight or trying to, but that fell on deaf ears.
good luck, my friend, best wishes to you. we both live to fight another day.