I was hospitalized a little more than a week ago for having Epiglottitis, otherwise known as my throat is KILLING me, it’s as if I had been swallowing razor blades, one after another. It truly was the worst pain I have ever had, birthing quintuplets naturally would have been less painful. Since I was released I have been on numerous medications to help (help-NOT) with my symptoms, especially the ulcers on my epiglottis, near my vocal chords.
I missed a scheduled trip to Washington D.C. with my family because the thought of moving, anywhere, was out of the question. I was sleeping a lot, aching all over and generally very miserable. I did go on the trip to Boston with my family where I stated that “I will be going there even if it’s on a stretcher.” Luckily it didn’t get to that but I was feeling terrible still and kept having to put my head down for fear of passing out. I couldn’t do any of the walking since I was so tired and out of breath; I was also coughing continuously. Bought over the counter products, DayQuil, NyQuil, In-BetweenQuil, Robittusin cough syrup and enough throat lozenges to feed an entire country for a week. Nothing helped.
Today, after all the doctors who took last week off for Spring Break returned, I had to, once again, go in to see them. We started with an ENT who scoped (that is such an unpleasant procedure) a camera through my nose to look at my throat. Progress, that seemed like it had healed. Why was I coughing incessantly? He didn’t know and referred me to my Internist. Basically, she had blood work done, a chest X-ray and an EKG. She then told me to see a Pulmonologist later in the afternoon. After a brief nap, we trudged along to another office to see the Pulmonologist who gave me an assortment of (more) medication and a follow up visit tomorrow for extensive breathing tests. He also alluded to a CAT scan in the future if the cough doesn’t go away in two weeks. Not something to look forward to. He fears that the all too powerful methotrexate given to me for my auto-immune disease (Hashimoto’s Thyroiditis) may possibly have damaged my lungs. Just great.
Wednesday, I have to go in to see the previously-known-as-the-guru-Dr.-in-the-city. I’m sure he will try to make me take methotrexate again. Or perhaps he will put me on Prednisone (again). These rating scales of pain are basically useless. At least all the people I know who have chronic pain and fatigue think that they are. When I was in the hospital with my throat pain, they asked me my pain scale from one to ten, ten being the worst pain ever. I gave them eleven as my answer. Enough said.
I’ve been on Prednisone, Plaquannel, Synthroid and a slew of other medications. I hate being on all these different medications especially when I still feel like crap, worse than crap. It’s time now for the new nasal spray, cough syrup and anti-acids prescribed today. My poor body, my poor soul. We are both spiraling downwards quickly in the haze of pain and emotional spirit.
Someone please catch me before I fall.
I wish I could catch you… I thought I was going through it, I should not complain and come to where you are and help YOU! I am so sorry you are going through all this shit. I wish that I could help.
Yes, pain levels never seem to help when you are always at or beyond level 10. Dr’s never seem to get that. They also don’t believe you when you are always at that level as they can’t seem to believe someone is at that level of pain all the time. Does the pain-karma ever get them back?
Ask you primary physician if there is a Level II Pain Program there. It is a nationwide program that I just completed followed by all major hospitals. You would benefit from it once you are able to get through your immediately problems.
Every day is a new day, and hopefully things will start to look up for you.
Thinking about you from California…
A professional excuse not to take methotrexate if you don’t want to. Tell the drformallyknownasguru that you have it on medical advisement that the drug may have caused serious, additional health issues.
The new meds might be temporary and help with the immediate problem of your cough. Good luck with the breathing tests. If you’re not taking in enough oxygen, you would no doubt feel tired, crappy, etc. It might not be a permenant issue (fingers, etc. crossed for you)
Picture a trampoline breaking your fall: sending you flying up, up, up, and up physically, spiritually, emotionally.
You are a survivor!