I knew nothing about pain, real pain, until a few days ago. When, for the second time I (presumably) have an ulcerated epiglottis. I CANNOT SPEAK OR SWALLOW !!! I have had plenty of aches and pain and tiredness from Hashimoto’s Thyroiditis and from Fibromyalgia but those pale in comparison to what I am feeling right now. After a night in the hospital, even with painkillers, the pain from below my throat is searing and intense, hot black steak knives through butter and steak combined. I am not a dramatist, what’s worse is that I am also not a pessimist. I have had this pain once before, last year, and thought it was an isolated incidence. Apparently, it wasn’t. Am I supposed to think this is a coincidence? I’ve been told, probably not. Not news I can handle very easily. Has anyone else had this type of pain before?
I go back to the ENT (Ear, Nose and Throat Doctor) this morning, it hurts so much I can’t even cry because crying will make it worse and there doesn’t seem to be anything worse than the pain I have had for a few days. I am on a plethora of drugs, Prednisone, a strong anti-biotic, pain killers that do not touch the pain, and a variety of other medicines. At the moment, I need a miracle, or at least a focused, caring Doctor who will get involved.
I called my Guru Dr, the one in the City who is the only Dr. I have (past tense) believed in and relied on before. I should have known, he is not something special, just something special in his field. This isn’t his job, his area of expertise and he needs “details” apparently the one’s I described are not good enough. The one’s that my Internist will provide him (she misdiagnosed this for the second time and has no idea about my case) will be the call he will accept. He will not reply to a call from the ENT that I am seeing today at 10:30. Beyond my intense physical pain, only I would feel emotional pain at this Dr. that I thought was also a caring individual. By definition of Dr., I should have known better but I never seem to learn. Ever. When I showed improvement in HIS area of expertise (auto-immune diseases) I was greeted with “you look great!!!”, “you lost weight” and a couple of hand holdings and pats in his office. He was so pleased, but apparently more with himself and his prowess than with me. Or perhaps, that is to them, one and the same thing.
Why can’t I just toughen up and not believe emotionally in people? What is wrong with my character that at my ripe old age of 53 I haven’t learned this lesson yet? It’s one I still keep repeating so obviously it is not ingrained into my character. Is the solution to be cynical and sarcastic with everyone? That doesn’t seem right either. Maybe there is no right or wrong.
I believe in myself, truly, but with this I need help. I thought 2010 was going to be the year of ME, a newly improved, positive me after having had 2 prior years of hell. That was not hell, this is. There is a phrase “I’ve been through Hell and back” I can only add and “Back to Hell again.” Am I feeling sorry for myself? Yes, I am. Do I have the right? I believe so.
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This may be a late reply ….. but I too have what is known as epiglotitis. It began as a small inflamed taste bud at the tip of my tongue….no biggie…except it hurt ungodly and would not go away. 5 days later my throat/swallowing was unlike any pain I have ever had. I am a nurse and was exposed to Strep 3 days earlier so assumed it was strep due to the white in the back of my throat. Jumped on Penicillin VK….then the next morning i could not even say ahhhhhh due to my tongue almost touching the roof of my mouth…I again self diagnosing popped a prednisone and thank god within a few hours was much better. Long story short….finally went to ENT and was given a great exam….he pulled my tongue and told me to say eeeeeeee…all I could say was ahhhhhhh and …….wahhhlahhh a definitive diagnosis. I am taking Omnicef and Prednisone for 10 days and after 12 days- 8 lbs loss I can eat small amounts of yogurt. But what a freaky occurrence. Influenza B is a virus we should have been vaccinated for as a child. Guess we got a bad batch. As for the pain…..I am totally with you…no one understands….yesterday I was spitting up blood due to the ulcers bleeding. I was told 1 in 100,000 cases are epiglotitis…we are just unique. I am concerned that you said it came back. Any allergies that you are aware of……certain chocolates with a lot of acid will burn my tongue…..hell i am sworn off of chocolate now…anything to not get this again. Best of luck would appreciate any input…..people think sore throat….chloroseptic….how bout just cut my head off.
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I feel SO bad for you and I TRULY understand. I guess you and I are in that horrible club together. NO ONE knows the pain. I hope you have pain medicine (not that it helped me) and are on Prednisone? That’s what they put me on. Yes, it did come back a year later, I don’t want to lie. but, I also have an auto immune disease called Hashimoto’s Thyroititis and they seem to want to blame that…..I don’t think they know, truly. I went to second ENT for a consult and he said it was something all together different. I hope you feel better, go back to the Dr. if it isn’t better and ask for help! and….no offense, but don’t self diagnose!!! 🙂
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you might want to read Swallowing Razorblades about our favorite topics. I know you can relate!
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You have every yet to feel “sorry” for yourself! Pain is a thief, and when you loose something (physical, emotional, psychological), there is a sense of loss, mourning, and grief.
I’m sorry your Guru Dr. let you down! My primary care physican hasn’t always been perfect, but then, I expect imperfections.
Don’t stop believing in people, or become jaded and cynical — especially if that’s not your nature or pysche. You don’t have to be a “Pollyana,” but you can keep a positive eye on things, events, and people. Get angry at the pain, your Guru Dr., your illnesses, then let them go. (I know easier said than done.)
I hope the ENT appointment goes better than you suspect it will! Good luck, good thoughts, and lots of (((((((((hugs))))))))))
Phy
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