Every year since I was very young, this time of year brings some form of bad illness or pain for me. It has been that way since I was 11 years old. I cannot sleep at night. I wake up and I have pain or an issue of some sort and insomnia becomes the norm. I have written before about this.
I can remember as a young girl getting up in the dark and going downstairs to see the remains of my parents drinking all night. Their favorite glasses would have remains of watered down liquor and the ashtrays would be full. I remember one time when I had something wrong with my shoulder and could not raise my hand above my head. They thought it was bursitis, but I know now it was a Psoriatic Arthritis flare. Back then, they did not even know what Psoriatic Arthritis (PsA) is. Many medical providers still don’t.
I have been struggling the past two years trying to find the correct drug to manage my PsA symptoms. Currently I am on Humira, which is if nothing else, has not caused a lot of side effects like some of the other medicines I have been on. But it also is not working. My labs show my SED rate and other indicators show high amount of inflammation. I do not need any lab to tell me that. On top of the PsA, I have just plain old psoriasis. I have never had it as bad as some people get it until now.
I want people to understand. Psoriasis is an auto-immune disease that affects 7.5 million people or 3 % of the world. There is no cause and there is no cure. The skin becomes inflamed and the reaction varies from person to person. I had been lucky not to have many lesions. These are crusty little to large patches of bubbled up skin that itches and burns. The Humira is not working on the Psoriasis at all so now I am covered with very itchy skin and scalp. My legs are mess. A component of Psoriasis is Inverse Psoriasis which occurs in very sensitive places. I am also having an issue with Inverse but I will save the details. However, this is what is keeping me up all night. Anyone who has a mosquito bite can tell you how bad an itch in the middle of the night can be. Imagine that it not only itches very badly but burns.
On top of all this mess, I have been having terrible back pain on my left mid side. I know it is my kidney. I have at least three large stones in there the last time they looked, and they are so big they will not pass. When I lay down, they are pressing on my kidney. By an hour after I get up and have some water, I am ok. I wanted to know why now this was happening on top of my labs showing a change in my Creatinine and GFR.
My Doctor is a young Indian who is usually very patient and concerned about me. He subscribes usually to less is more when it comes to medicating. I have been seeing him for about five years. He does not like the fact that my rheumatologist has been changing my medication so much and does not really understand why we cannot find the right drug.
This visit was terrible. He told me that my kidney had not failed. Yes there had been a change in the creatinine but not that significant. (The lab reading was as high as it was when I struggled to pass a huge stone two years ago) He said the GFR was not a reliable indicator. (So why have the test?) My Systolic reading was forty points higher than normal for me but the diastolic was only 73, which is my normal. And he dismissed the back pain. He also told me to stop taking a potassium supplement I was using for the leg cramps.
What he did say was so painful I started to cry. He said I should go get bariatric surgery. In all the years I have seen him, he has never said this. My last doctor said it would be extremely dangerous for me to have the surgery because of my blood clotting issues. Factor V Leiden is an inherited disease and is passed down through families. It has nothing to do with my weight. He seemed short tempered as he spoke, like my visit was a bother.
He said my blood pressure is out of control. That’s not true, it has been steady and normal level for over a year and a half, since they took me off one shot (for PsA) that raised it to dangerous levels. He said my kidney issues are from being overweight. I said I have stones in there and this has not been a problem since May of 2014. He saw the stone I passed then and was amazed. He seemed to totally forget all that. I had to ask him to schedule me for an ultra sound to see what is going on, because this was NOT normal.
There was more he said that was harsh and I sat there with tears streaming down my face.
To me, he has sentenced me to death. I cannot express how much this affects me. I have a reaction to the concept of bariatric surgery that is so visceral it makes me physically ill. You know when something is very dangerous, and your gut tells you…”BE WARE”. That is what happens to me. When I was younger and able to exercise, the thought of going under the knife did not bother me. I wanted the help. But I was told I was not a candidate way back then. In those days, you had to go through hoops to get the surgery. In most cases, insurance did not cover it.
Now I am 62. I have a diagnosed blood condition and a chronic illness. Now they will cut you open if you simply ask. I argued back with the doctor that the long term success rate they are now finding is not great. This surgery is still new medicine. This was when he made a comment about dying sooner from being obese or having a longer life. I asked, “what if I die from the surgery?” His response was I was high risk, but he felt it would be worth it. REALLY????
Many people gain all the weight and then some back. But even if they do not, the other complications are huge. I do not know anyone who has had the surgery personally who said they would do it again. One friend had such terrible anemia, she had to have transfusions. And she is one who gained everything back. We let one employee go because she was out so much. They found another reason to terminate her, but she never recovered well from the surgery. She was not obese. She was plump and did it for cosmetic reasons. We just had one young employee who had two toddlers die a few months ago from the surgery. She became septic. She was 28. I know of someone locally who had a debilitating stroke from the surgery and is still not and never will be the same. One friend had it done two years ago and she has kept the weight off, but she looks 60 to her actual 40 years of age. She was much prettier heavy.
I could go on for hours about this. I have cried every night, and I am fighting them now. My point is that this is what people of size put up with all the time. I went to the doctor because I think I have a kidney stone trapped. The labs indicate it, my pain indicates it, and I needed professional help before it gets worse. My physical abilities are in the crapper right now because I am not properly medicated for the PsA. I can hardly walk some days. The pain level is extreme. My skin is on fire. I am not sleeping because of this. I cannot get into the rheumatologist until January 3rd. He never has open appointments because rheumatologists are in such short supply. And my PCP is telling me to take a risk with my life and have a surgery that could very possibly kill me. ( and my gut says it will)
I do not think I have ever been as depressed as I am currently. I am not saying that being thinner would not resolve some things. I am not that stupid. I feel trapped in a world lacking of compassion, ignorant and insensitive, which is leaving me to suffer with vacillating issues of either continuing to suffer in pain or commit suicide, which is how I feel about the surgery.