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very long health update

You've all been waiting for this, right...?

I was scheduled to see Dr. T. in Detroit next Monday for an endoscopy on my left eye to determine the state of the interior since the cornea is "completely opaque" and discuss whether there is any potential benefit to an Alphacor. This appointment has been tentatively rescheduled for May 15 due to Medicaid's backlog of preauthorizations.

I saw Dr. U. this morning regarding my pain flare-up, which has not abated as they normally do following stormy weather. I do not have symptoms of carpal tunnel syndrome (fortunately). My pain is present in the knees and joints in my feet and one hip as well as my fingers, wrists and elbows; although the most severe pain is in the fingers and wrists. My Motrin consumption has increased to four instead of two, and the four make it bearable rather than gone.

He's giving me a prescription for Naproxin (s0.) for the joint pain and sending me for a blood test and X-ray of my hands to determine whether I have rheumatoid or osteoarthritis. This seems a question of not if but which. The arthritis question has come up before--actually several times over the last 15 years--but no X-rays have ever been done and my pain has never been constant enough to warrant serious concern. I've now had almost constant pain for at least five days. Throwing migraines and asthma on top of this would really aggravate my emotional state, and I'm glad it hasn't happened. Interestingly, I haven't had any seizures; so that sort of throws off my theory about seizures and pain control and tells me that the Topamax is doing its job.

I should note that my emotional state is slightly precarious, mostly due to the fact that I am not able to cry. (See below.) I'm managing so far not to bite people's heads off, but I'm noticing that I'm beginning to get irritable over small things that would normally arouse little response or waves of compassion in me. Apparently I am finding it difficult to muster energy for anything but pain and emotional control and daily tasks right now. I dislike this; but I can't do a lot about it except recognize it and make an effort to communicate it effectively to people who need to know.

I'm not going to go on and talk about Dr. V. There is no Dr. V. I just thought it was fun to do Dr. T. and then Dr. U. I need a bit of amusement lately... Dr. H. is my ENT, and he's handling the reason why I can't cry: polyps in my sinuses. As I said in last night's phone post, if "poly" means "many," dwhat is a polyp...? And what does it mean if I have several polyps? Do I have polypolyps?

Enough attempted humor... I do have several polyps. He can see them on my scan and through his scope. I'll be having sinus surgery on April 28. Hey, my first non-eye surgery! (Wisdom teeth don't count, really.) He says that my sleep quality should improve because my CPAP will work much better when there's somewhere for the air to go. Imagine that! How much sleep AM I missing, anyway??? I won't be able to blow my nose for a week. I forgot to ask if that means I should put up a Paypal button in case people want to donate for my Puffs collection... Maybe I'll register www.puffsfor3kitties.com... Not really--I'm not rich enough. But it's amusing to think about, and I'm not thinking about pain.

25 percent of polyps are allergy-related. The other 75 percent are cause-unknown. We discussed allergy testing and my cats. He said that if I had been unexposed to cats for at least six weeks and then was exposed without having a reaction, I am probably fine with my cats. I've lived in and out of cat exposure several times since 1990, and my reexposures have gone well; so I'm going to stop agonizing over whether my kitties did this to me. He asked what else is on my tests. Lots of pollens and molds. He said he's familiar with molds and molds would not create these polyps. I can buy that. So maybe they are part of the 75 percent. It's a reasonable thing to assume. He said there is no way to know. All we can do is remove them and go from there.

I wondered just how long I have had this polypolyp problem anyway... When I was a teenager, my doctor said that my sinuses were 90 percent blocked and he suspected that I had no idea what it was like to feel good. No surgery was ever done then. I have to wonder why... Was it just not possible? What am I going to feel that I have never felt before???

I had this silly hope that I would just blow the polyps out while I was in TN. After all, I had been taking this super duper Augmentin, and I had my nasal spray back. ... And I WAS blowing SOMETHING... But he can still see the polypolyps with his little mirror. No more dreams... And I can feel them anyway... And I can't cry... When I do, nothing much comes out my nose... It all goes down my chest and makes me cough like I'm about to die, which then makes me cry about my inability to cry... And what a thing for a person with chronic pain to not be able to cry...

I can't take Motrin with Naproxin... Motrin is what I take for migraine pain... So he gave me Darvocet because Tylenol does nothing. I hope to not need it very much. But I do need it on hand, especially during the westher season. Note to self: do not move to a stormy climate again.

Dr. H. says do not take aspirin, as it makes asthma and polyps worse. I don't take it anyway, but it's good to know..

My coffee consumption has increased quite a bit... I don't like it, but at least it doesn't alter my judgment negatively.


( 7 comments — Leave a comment )
(Deleted comment)
Apr. 12th, 2006 01:35 am (UTC)
I am so sorry. I hope that the polypolyp surgery goes well and brings you much relief. My husbands tonsils were so enlarged they were touching for most of his life, and he recently had them out. He is so much better. He breathes better, sleeps better, doesn't snore anymore, and doesn't get sick as often.
I also hope that the Naproxin helps with your joint pain.
Yay on the lack of seizures!
Sending you many warm thoughts and (((HUGS)))
Apr. 12th, 2006 02:15 am (UTC)
"And what a thing for a person with chronic pain to not be able to cry."

I can relate... You're in my prayers.

Apr. 12th, 2006 02:27 am (UTC)
Hi Sarah. Wow you're such a young person to have this many health problems, though I suppose these particular problems have nothing to do with age. Isn't the arthritis autoimmune, in fact? I have an auto immune disease of a different nature, and I know just how frustrating it is to sit by as they make life almost impossible. Seizures? What are they like? I've seen one grand mal, and it was scary to watch, but must be scarier to experience, and maybe confusing too. I can't imagine not being able to cry. These past several weeks without the ability to cry would probably have killed me! My heart goes out to you.
Apr. 12th, 2006 01:38 pm (UTC)
arthritis and seizures
Osteoarthritis has to do with wear and tear... Rheumatoid is an autoimmune disease. I have a lot of wear and tear on my joints, and most of my pain is in areas where I have had injuries due to falls during seizures. Since I have weakness in my knees and ankles, I use my hands for support anytime I get out of a bathtub or off the floor. I also worked for several years as a child care provider with infants and toddlers, which involved a fair amount of lifting, being on and off the floor, etc. On top of it, I'm typing and playing the piano for a fair amount of the day. So wear and tear is the name of the game.

My seizures are rather atypical. They are most similar to what are called complex partial seizures. I retain consciousness during many of them and can follow verbal instructions; but if I'm left to my own devices I do things incorrectly (put the milk jug in the sink and the dirty glass in the fridge, etc.) My orientation is altered, including my body awareness. They are often provoked by repetitive sounds or sound patterns in the same way that some people's seizures are provoked by strobe lights. I've had abnormalities on my EEG, but they don't match the seizure pattern that I describe so they are dismissed. If the seizure runs its complete course, at the end I cry and then sleep for a couple of hours. Occasionally I lose consciousness for two or three minutes. I have warning ahead of time, and I have learned to start writing things down when I feel a seizure coming on so that I will know later what I did because I have learned the hard way that I have gone through my whole morning routine while having seizures, eaten breakfast and not been aware of it, had whole conversations with people in which I was "loopy" but asking them to stay on the phone while I took the dog out, etc. This creates a false impression that I remember what has been done during the seizure; but I only have factual knowledge.

If you're interested in more of my experiences on this, they're filed under my memorable entries with terms like epilepsy, seizures, nonepileptic seizures, and Topamax.
Apr. 19th, 2010 02:20 pm (UTC)
Re: arthritis and seizures,here's some ideas and stuff
im sorry to go back and reopen an entry youve written ages ago,i was looking for where you mentioned taurine but i think it was l-tyrosine you said and i remembered it wrong.sorry!

anyway,ive been interested in your case since i first read this bcause some of the symptoms you describe do sound like partial seizures. i had thease type of symptoms for years and didnt know what they were until my focus spread and they became obvious seizures.i hope this doesnt happen to you.i hope you dont have szs,but if you do,seems like your dr's have been realy bad about helping you.the only reason i got any proper treatment is because i had 3 EEGs over the years and they all showed the same seizures in the same place.if your EEGs are normal now,its still possible they wont be later...i dont know,i guess my heart just goes out to you for your frustration with this.maybe you dont have thease symptoms anymore or you resolved it and im beating a dead horse,but just know that my concrn is there and if you do still have thease szs or whatnot,then try again with a defferent neurologist.id just hate to see you end up like me,thats all...im just concerned for you okay?

sorry for the long message,god bless you
Apr. 19th, 2010 04:06 pm (UTC)
Re: arthritis and seizures,here's some ideas and stuff
Thanks for reading this... I should edit this, although now it will have a comment. I eventually got good seizure on Topamax, though I am still taking taurine, L-tyrosine, and magnesium. My neurologist never did find my seizures on EEG. I had a lot of infection and polyps in my pper sinuses near my brain, and the seizures became fewer when that was treated. I now have seizures most when I am sick with a sinus infection or when I am exposed to audio or visual stimuli. The Topamax does a good job, but I do have to avoid certain types of stimuli. I think that pain is also a trigger, and I do know a lot of people who have pain-provoked nonepileptic seizures that act like partial seizures. They get relief from antiepileptic meds.

My arthritic was eventually diagnosed as autoimmune... In 2007 I finally had something show up on an X-ray. I have arthritis in my spine, and this type of arthritis can affect the extremeties in some people. Since I already have other injuries to my hand and ankle joints, none of this stuff surprises me. I have a very complicated life. :P So far the seizures are the easiest thing to manage. That is a sad thing to say because they were once such a difficult part of my life!
( 7 comments — Leave a comment )


Sarah Blake LaRose
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