With my health issues, I know when I can get myself together and leave the house. When these times come, they are very short lived ~ maybe an hour or two. Also, these escapes are on my terms. I have to feel the best I can ever expect, before I make the bold decision to do something wild and crazy like ride the scooter around the food store. If I'm really gutsy, my car makes a beeline for my grandchildren. I'd say that happens approximately once per month, maybe twice. When I get home, I am so much sicker than I would have been if I hadn't left. If I feel like I can steal an hour or two, I do it knowing there will be a hefty price to pay. Regardless of how sick I get, it is always worth it....especially when I get to see the kiddies.
So, knowing this, I usually start to panic when I have something scheduled, like MRI's, spinal taps, dr. appointments in Miami or local for that matter, or like today, the endoscopy lab at the Cleveland Clinic. They are not saying, "Hey Cathy, when you have a decent day, stop in for an MRI"....if only. I dread these days because I have to be someplace on command at an exact time. This is so hard for me, since most days I not only have to stay in the house, but perfectly horizontal in my bed.
Today was one of those horrid examples. Warning, here is a little ADD tangent. Around thirteen years ago, I had a surgery where they created a valve where there was not one, at the base of my esophagus. It is because I didn't have this, that I now have Barrett's esophagus. Barrett's is pre-cancerous tissue at the base of my esophagus, caused by twenty-four years of stomach acid splashing back up in that area. With Barrett's, I need a biopsy every other year. The lucky thing, is that Barrett's in woman almost never develops in to cancer. Regardless, it is obviously smart to keep an eye on it. After having that procedure I can no longer vomit. OY ~ I've mentioned before how complicated my issues are and how each thing seems to complicate the other......sooo, here comes another tangent that will come full circle in a minute....with my POTS, I have a condition called gastroparesis. With this, my stomach does not always get the nerve impulse to digest my food. It is a horrible, sickening feeling. When I have this, which is several times per week, my food stays in my stomach and rots. Once it turns to liquid, it passes in to my intestines. In the meantime, I am extremely nauseous....rolling in the bed, moaning nauseous. .....working my way back to the esophagus valve surgery....if only I could vomit at these times, it would be such a huge relief. This condition also causes intense full abdominal pain that wraps around from front to back.
Okay, as usual, I am making a short story very long. Just want to let you know how my day started out. My prep for today included drinking one gallon of Gatorade in one hour. I did, then was so unbelievably nauseous. So intense! Again, I was rolling in bed, groaning as it got worse and worse. Eventually, I started to have dry heaves. I went in to the bathroom thinking that I was going to finally be able to vomit. No such luck.
That's how my day started and pretty much stayed. I was feeling horrible. A day that I needed to stay flat on my back for sure. I am so incredibly miserable going to appointments/tests on days like these. You have no idea how hard it is. When we got to the waiting room in the Cleveland Clinic, it was pretty packed. It wasn't more than fifteen minutes before I could feel myself very quickly fall apart inside. This feeling is something that I don't think I can adequately describe. I was on fire and my face was sweating. Inside, to my core, felt like I was dying. At this point, I knew I could no longer sit in the waiting room. I asked the nurse if there was an extra gurney in the back that I could lay on until they are ready for me. My voice was shaky and I was about to cry. At this point, I couldn't stand straight and was leaned over her desk. Of course, she said they didn't have a thing......she gave me a blanket and told me to use one of the pews in the chapel. I went in, expecting it to be peaceful and dimly lit. I almost died when I walked in, it was packed and the "high beams" were on :(
I was so sick, I didn't care what other people thought, I stole a pew and down I went....until my "Outback" buzzer went off.
Walking to the nurses desk was awful. I couldn't walk straight or pick up my feet...shuffling like a crazy drunk....if only~ They brought me back, it took me forever and couldn't keep up with the nurse. Thank God, they put me in bed and the got the IV in on the first "shot"....phew! The nurse had to go over my history. Having lost the blood in my brain, from sitting in the waiting room, it was so difficult to talk. I was slurring my words and saying words that didn't belong in the sentence. I can't tell you how frustrating that is. My brain was not available and it is so hard to talk and make sense without it. HATE IT...
In the end (no pun intended) the colonoscopy went fine. For the first time in thirteen years, the Barrett's tissue had changes. They biopsied four areas. Initially this freaked me out, but the doctor told me he didn't expect it to be anything serious. I'll get the results next week. To be honest, I'm not at all concerned. From the way my doctor acted, it is fine.
When we came home, I was in entire body pain. I know I mentioned before that pain is my favorite symptom. With pain, I can take Vicodin and it always helps. Unfortunately, there is no medication available for my more debilitating, scary symptoms. I slept for a few hours...woke up....remembered my new schtick...the daily journal...whose idea was that???
Tomorrow, I need to start that 24 hour urine collection. Ugh...just dreading dropping it off on Friday...ready or not.
Again, this is a very typical example of my experiences at the doctors/tests. I dread them from the minute they are scheduled.
It is going on midnight and I know I am going to sleep/escape.
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