Well, this chick finally had a family doctor’s appointment since my drama with the ER and since returning from seeing the Specialist. Let me tell you a little about the drama of the newest visit. I was put in a room to wait on the doctor and started noticing something was off with the room. The longer I was in that room the worse I was feeling. I started getting a headache and a sick feeling to the tummy. I caught myself lifting my blouse up and smelling it and breathing thru it. The room had a pitiful smell of urine. I could stand in one corner of the room and could tolerate the smell, but the other side of the room was a no-go for taking a breath. Thus, I went into the hall and asked the nurse if I could be moved. I think someone had done the no-no in the room behind the exam table. People! Not 15 steps out of the room was a restroom! You never know about some people.
Anyway, we discussed several things and one thing we are thinking about is for me to see a pain specialist that works with cannabis. We discussed the items from the Tarlov doctor and she agreed that I need a local neurologist that will be willing to take a patient, such as me, on. When she named the first group, she thought would see me, I had to give her the news that ‘no’, they refused me as a patient a year ago. So, she is trying to set me up with a doctor that had left the giant practice for reasons she would not discuss. Then we discussed my most recent visit to the ER and the report that was sent to her office. She asked why they [the ER] did not set me up to see the Urologist that had done my kidney stone work and why they did not have me see a lung specialist. Then we also discussed that there were no sizes of any of the findings on the report. Yes, radiologists tend to be on the lazy side. So, I left her office almost feeling defeated. She wants me to see a total of five types of doctors. I was honest with her and told her that I could only deal with one at a time and which did she feel was the most important. That was the Urologist. Second comes the neurologist and then the referral to the pain specialist. Then see the GYN, and least is some name that I can’t even remember. I agreed to make the call to the Urologist if she would have her office tackle the Neurologist. I chose that route since it will be interesting to see her office’s responses to trying to find a Neurologist that will see a known Tarlov Cyst patient.
It is time to talk about the mood I have been in for the last month or two. I honestly can say it is not depression. In a way I am angry because no one is willing to really try to help patients like me. Then I am angry because my body seems to dislike me in that it tends to be attacking itself. So, “angry” is a good word. Then, I am further learning to laugh at the stupid things that happens to this body. I have a new bruise from my collapsed into my laundry room floor. [I had a horrific bee sting in the unmentionable places and it literally shocked me so much that I just hit the floor. It was not as bad as the pain I had from the kidney stone, but it was worse than my labor pains. There was no warning, in the least, that I was going to be attacked. Thank goodness it lasted just minutes, but it was the longest lasting sting I have ever had.]
Having a disease like this, you tend to lose any persons you might rant and sound off to. You really hate to burden the ones under the same roof as you. Because it is a burden to them to always hear the negative; and with this home, the husband has his own concerns that he needs to unburden about. Not that he does, but he should. Then the only other person I really talk to is getting married soon and I am trying really hard not to bring her joy down.
After I do some ‘house-keeping’ I will give you the scoop on the wedding and if I made it thru.