The Wait

Monday, April 5: I see my internist (Kirk) for my yearly physical and tell him about the sunburn-like pain in my lower leg bones. He thinks it’s the early stage of a rare and devastating disease called CRPS (chronic regional pain syndrome), and orders a bone scan. I know someone with CRPS, and have often comforted myself with the thought that, as bad off as I am, at least I don’t have THAT. I learn from the Internet that the disease is progressive and incurable in the absence of early treatment or spontaneous remission. I also read:

“At an advanced stage of the illness, all patients develop significant psychiatric problems and narcotic dependency, and are left completely incapacitated. Some commit suicide.”

Deborah M. Shanley
Executive Director
International Research Foundation for RSD/CRPS

I’m scared shitless.

Thursday, April 8: The bone scan people haven’t called to schedule an appointment, so I call Kirk’s office. Trinity tells me that the paperwork is in process.

Friday, April 9: I call again, and again Trinity tells me that the paperwork is in process. I ask to speak to whoever is handling “the paperwork,” and I get Casey’s voice mail. I leave a message, but she never calls back.

Monday April 12: Trinity tells me the same thing, so again I ask to speak to Casey. I leave a second message on her voice mail. Becky calls back, and repeats the line about paperwork in process. When I ask “what paperwork?” she says Kirk’s signature. “When will he sign it?” I ask. She says she doesn’t know, that Casey is in charge.

Tuesday April 13: I call a fourth time and am told the same thing.

Wednesday April 14: I set my alarm so I can be there when Kirk’s receptionist opens the door at 7:00. I hand her a letter marked “please deliver immediately.” In it, I remind Kirk that this is a very serious disease, that treatment within the first three months is vital, and that my symptoms appeared two months ago. When I don’t hear anything by noon, I call the bone scan office and make an un-referred appointment for the next afternoon, which I anticipate having to pay for myself.

That night, I read on the Internet that a special kind of bone scan (called a triphasic) is the diagnostic test of choice, but my appointment is for a Dexascan, which is the only kind I knew existed. I call Kirk’s office the next morning to ask what kind he ordered. Becky says he ordered a Dexascan. I ask if she is certain, and she says yes. “Why has it taken so long for an urgent referral to go through that I had to order my own test?” I ask. She says that Kirk didn’t mark it as urgent and implies that, as a result, all my efforts to speed things along were wasted. The pain has now spread into my thighs.

Thursday, April 15: I get my Dexascan, and learn from the technician that it is almost certainly the wrong test. I anticipate changing doctors, but I’ve been with Kirk fifteen years and have always considered him a caring doctor and an excellent diagnostician, albeit one with a sometimes difficult staff. Also, it’s a sorry-ass time to start with someone else, so I make an appointment to see him the next day.

Friday, April 16: I ask Kirk if he got my letter. He says he didn’t, so I tell him that I gave it to the receptionist who, as I had since learned, gave it to Becky who gave it to Casey. He apologizes repeatedly and effusively, promises that such a thing will never happen again, and goes looking for the letter. Casey has it.

He reads the letter in my presence, and notices that Casey had me down for the wrong test. I WAS supposed to get a triphasic scan. I ask how soon he can arrange the test, and he says he will shoot for Monday. He calls the nuclear imaging department at the hospital, and they tell him that I will have to wait until late next week at the earliest because the radioactive isotopes used for the test have to be ordered fresh from Iceland. I ask him if I can get it done sooner at Oregon Health Sciences University in Portland. He says no, that they would still have to order the isotopes fresh.

I point out that the isotope test is inaccurate 55% of the time, and suggest that he go ahead and start treatment based upon his tentative but confident diagnosis. He says the treatment might foul up the test results. He also disputes the idea that there exists a three-month window.

I tell him that I got my physical therapist to send a referral to a pain management specialist since I anticipated an anesthesiologist or a neurologist overseeing my CRPS treatment anyway, and that I had already made an appointment. He approves of the clinic to which my physical therapist referred me.

I say that I would prefer a disease that would kill me to one that might force me to kill myself. He advises that I not focus on the worse-case scenario.

Eleven days after I first saw Kirk, the wait for the right bone scan begins again.


The Blog Fodder said...

Your medical bureaucracy sounds like Ukraine's. Must just go with the territory. I sure hope it is not worst case scenario.

CreekHiker said...

Oh My! Snow, I'm so sorry you have to deal with this. It's sad but my own medical issues and the lack of treatment sound similar. I do hope that the diagnosis is something that can be treated!

Diana said...

One of those "Hurry up and wait" situations. I hope the week flies by for you Snow but with all of the pain you are in, it probably won't. I will be waiting to hear the results.
Love Di ♥

kylie said...

i dunno what to say, snow...........

the frustration

Marion said...

Snow, I hope you're wrong about this. But just thank God you have insurance. I have pain 24/7 and can only afford the cheapest medication from my pain management doctor as I've had no insurance for over 3 years now. I'm sick and fucking tired of feeling sick and tired. Sending you good thoughts...

lakeviewer said...

p.s. What is the flower on your blog picture? Is it snowbrush?

lakeviewer said...

Oh No! Nothing is moving because of the volcanic ash. You may have to wait for those isotopes. Keep fighting for your treatment; you are the only one who cares about you.

Marion said...

Wow. I'm sorry you have had such a difficult time with your doctor's staff. Waiting is dreadful, full of frustration and fear.

I'm glad you're going to the pain management clinic. I found really good information and knowledge on how to beat the pain in those clinics.

I'll be thinking of you, and I hope you will soon find out the diagnosis. This pain you have has gone on way too long.

julie mitchell said...

How frustrated and scared you must be...and although I don't usually condone violence...Nurse Casey sounds like she is in need of a whack up side the head to get her back in touch with humanity...I appreciate your by day...After the volcano is this needed stuff going to be able to fly to you? Thinking of you..
hug, hug

Matawheeze said...

Have you considered printing out this post in 48pt. font, pinning it to your shirt and sitting outside the doctor's office door for a day (or two since they might not notice you)? In the office would be better, but...

Wonder how Nurse Casey would feel if this was her husband?

rhymeswithplague said...

I found myself gritting my teeth as I read your post. Not to make light of your situation, but you seem to be living proof of the old saying, "The hurrier I go, the behinder I get."

lakeviewer is not quite right, is he/she? I mean about you being the only one who cares about you. You do have Peggy in your corner, I'm sure, plus all of us out here in blogland. We should all march right out there and whack all of the incompetent fuzzybrains upside the head.

nollyposh said...

Sighhhh this is one of the major problems of being on the 'medical wheel'... If 'they' would only 'get their act together!' ...When i have been at my lowest on the energy scale, having to organize different docs to fit my picture of treatment has been hard... So i sympathize with your plight completely... For myself i have often wished for a website that states doctors different abilities and interests and connections, so that co-ordination could be made smoother for ME! How you manage with all that pain, i really don't know!?! (((hugs)))

ellen abbott said...

this is exactly why I hate and mistrust doctors. Ultimately, they don't really care, it doesn't hurt them a bit and if he can't control his own staff ie get his messages and documents then he is a sorry ass doctor. Sorry, just my opinion.

And I'm really sorry that you have to go through this, that you might be afflicted with this.

Bernie said...

Snow, when I was first diagnosed with Breast Cancer I was advised not to research on the Internet, so I didn't for the first while, only after I was well into my year of treatment did I do some reading and research and I was so glad as I would of been scared to death knowing what was ahead of me, as it was I was half way through it already and surviving in a fashion anyway.
Please don't think of the worst case scenario, it will not solve anything and if you believe in manifesting........well I'm sure you get the picture.
Rest and keep thinking positive thoughts (this should at least will give you a few good days)
........:-) Hugs

kj said...

snow, i am NOT happy with kurt. what i am most unhappy about is that he does not answer your phonecall(s) on the day that you call. that is not appropriate care.

pain management is often managed by a physiatrist, which is a MD doctor of physical medicine. once the diagnostics are done, if pain management is the next step, i encourage you to research pain management programs. i can research a bit for you too if you want.

honestly, this story about your doctor's office is wrong, wrong wrong. i can't find myself excusing your doc. he runs a poor office, it seems, and that alone concerns me.

i'm sorry this sucks so much. i do hope there is a route for management of your pain. i hope you do not give up on that expectation.

jeez louise....


Snowbrush said...

Thanks so much everyone. I am somewhat calmer today. I have found that, as often as not, my dealings with medical people make a bad situation worse by adding bucketfuls of stress. I think this is why so many people won't even go to a doctor unless they're in really bad shape, and I can't say I blame them.

What I posted about Kirk's nurses was worse than what I usually have to deal with, but it's still along the same lines. Experience has taught me that I can NEVER relax and trust that medical people will take good care of me. I must ALWAYS watch everything they're doing. And I KNOW that when I'm out of sight, I'm usually out of mind.

I have also observed that the people who work in doctor's offices are almost invariably poorly paid women who work for rich and often arrogant men--and a few women. I believe these women oftentimes seek to exercise their own power--and take out their frustrations--on their doctor's patients. Just as they are at the doctor's mercy, so are the doctor's patients at their mercy.

To further add to my stress are the seemingly endless and unreadable bills (unreadable due to all the unexplained codes and abbreviations) followed by the hour long phone calls that I have to make to insurance and to doctors' offices to get them paid or corrected. I am still being billed for the surgery in December, although I have spent approximately six hours on the phone trying to correct the error. Every time I think I have it taken care of, here comes another, and more threatening, bill for $1,200 (at least they're down from their original bill for $1,400).

What I'm going to do about Kirk. Aside from the talk we've already had, I'm going to give him a more detailed written version of events. I'm also going to ask that he give me credit on what I owe him so that I will be reimbursed for what I have to pay for the Dexascan. If he will do that, I'll let the matter drop based upon his many apologies and his past excellence. If he won't credit me then I will sue him in small claims court--and, yes, I mean that. I can be quite tenacious at times.

Snowbrush said...

Bernie, you're right in that the Internet can scare the hell out of a person. On the other hand, it enables me to have a clue as to what's going on, and that's good at times. For example, if Casey hadn't screwed up the order, I would have taken myself in for the wrong test. Also, doctors never seem to think of everything that can be done. They seldom spend more than ten to twenty minutes with a patient, so a lot of useful information simply doesn't get conveyed.

Lakeviewer, yes the photo is of a snowbrush--Ceanothus Velutinus. It only grows in the mountains of the Northwestern U.S., and its seeds need fire to germinate. The leaves are shiny, sticky, and smell like cinnamon. It gets to about fifteen feet high and often forms thickets.

Marion, I know about your insurance situation and am just so damn sorry. I often remind myself that I at least have insurance. I recently heard about a nine year old boy who took a hard fall and detached both retinas. Surgery could have saved his vision, but his parents had no insurance, so now the state will have to pay many times more to send him to blind school. What a system.

Rhymes, I'll mind read a little and say that I didn't take it that Lakeviewer meant that I'm the only one in the world who gives a rip about my welfare. I just thought she meant that I have to take responsibility for seeing that I'm well cared for as opposed to simply trusting my healthcare providers to do it.

Matawheeze, I haven't thought about the big font hardcopy idea, but I have thought about sending them my blog address. I think that, instead, I'll edit this entry somewhat and give it to Kirk so he will have a detailed account of what I have already told him.

Ellen, a lot of people hate and mistrust doctors. I don't generalize quite that much, although my nurse wife does. She often talks about how disrespectfully doctors talk about their patients, and of course doctors often treat nurses rather badly too. Peggy says the women doctors are usually worse in this way than the men. Go figure. Women doctors were supposed to humanize the system.

Natalie said...

3 comments from me gone missing? What is going on here?

Crazed Mom said...

Good Lord Snow all I can say is WTF? We've got total morons in congress who say our healthcare is the best in the world. I say try a doctor who doesn't have congressmen and senators as patients.

No one deserves chronic pain. Except maybe Hitler and he was addicted to many drugs due to his incompetent and self important doctor.

My worst pain has been mental such as when my infant spent 5 months dying, when I discovered the fatal disease came from my husband and I, when he died in my arms and the 10-14 years in the aftermath. My mental pain has been so bad that suicide ran through my brain quite often. With mental pain, thank you God, time does help. I wouldn't wish losing a child on anyone. No one deserves to suffer either extreme mental pain or chronic pain with only the possibility of more.

I am sorry for all that you are going through.

Crazed Mom said...

Oh, this may be small comfort but whenever I read your blog or a good friend's blog(fibromyalgia) I do stop feeling sorry for myself.

Snowbrush said...


Natalie said: "3 comments from me gone missing? What is going on here?"

Natalie, my love, my darling Aussie friend, I emailed you an explanation after the third one, and so I'm assuming that you haven't checked that particular email box within the last day or so. Here is what I wrote:

"I didn't publish your comment because I thought you just wanted to let me know about your new blog. Did I miss something? I was in too much pain to sleep last night, so two hours after going to bed, I gave up and checked my blog. There were your messages (one correcting the address given on the other, as I recall) plus a diatribe from some religious nut. If you said something related to my post, I just missed it, and I AM sorry. I'll blame the drugs."

Now, why didn't I publish your comments anyway? Here is my thinking. People sometimes write to me (on my blog) things that are unrelated to my post. Oftentimes, these things are related to something they posted on THEIR blog that I responded to. I have no problem with this. However, my goal is to limit the responses that appear on MY blog to those that are relevant to MY blog. That way, people who visit my blog won't have to waste their time reading responses that are irrelevant to the topic at hand or--in many cases--won't even make sense to them because they're related to someone else's blog.

I also try to reduce the overall number of responses that appear on my blog by responding to those who respond to my blog with as few separate responses as possible. For example, I won't respond to your response and hit "publish," then respond to the next person's response and hit "publish," and so forth. It's just my way of keeping the number of things people get in their mailboxes (or have to wade through on my blog) to a minimum. Look at it this way. If Blogger X puts up a post, and fifty people respond to Blogger X's post, and then Blogger X responds to all fifty of those people individually, the first person who responds--assuming he or she subscribes--is going to get 100 emails from that one post on that one blog alone, and, likewise, 100 responses are going to appear on Blogger X's site.

My desire to reduce clutter is why I (A) seldom publish responses that are unrelated to the topic I posted about and (B) respond to your responses in as few additional response as possible.

So, Natalie, I do this all the time when people write about something unrelated to my post. Don't take it personally. I'm not saying that I don't value what you wrote. I just interpreted what you wrote as being for me alone, and therefore unnecessary to publish for other people to see.

I hope I am being clear. I am having a bad time right now, pain-wise, so it's hard for me to concentrate. I've probably spent a half hour just writing this response because I want so very much to make myself clear and hopefully to allay your hurt. I never for a moment meant to offend you or to imply that I didn't value what you wrote.

Green-Eyed Momster said...

I'm so sorry. It doesn't sound like any fun....

I have an award for you. I'll understand it you're not up for the rules part.

I hope you feel better.

Rita said...

Keep fighting for your treatment; you are the only one who cares about you.
I agree with lakeviewer's sentiment to the degree that I believe it applies to any kind of relationship out side of ones family, and some personal needs inside of ones family. If you don't push or insist on what's right for you, no one else will. That's just life.
"Good things come to those who wait" has not been the case in my life. Anything I've gotten that's any good, I've had to make it happen.
"The meek will inherit the earth." I call bullshit on that.
My new age friends talk about the universe looking after them...that's B.S. too.
I hope that helps. :)

Sonia ;) said...

Damn Snow you have having a hell of a time. I hate feeling like Im being held for ransom from my health care provider. Sounds like his nurses took the heat, or really didnt know they had lacked on customer service skills.
Have a better week sweetie. New meds doing much better, was a bitch coming off one cold turkey only to have 5 days of building up new one from lowest dosage. But we will see how my body builds up tolerance with this one.


Anonymous said...

My family all share fibromyalgia, crohns disease, diabetes, lupus, etc. All known auto-immune diseases which can run in families. I have an additional one that eventually becomes squamous cell cancer. Three of my family members have contacted a doctor in Florida. One traveled there from Indiana, the other two have had phone consultations where he contacted their Indiana doctors and ordered two blood tests. One cost $300, the other, $2,700. He followed up the intensive tests with another phone call, and pharmaceutical prescriptions. The pills, sadly, cost $30 each and have to be taken 3 x a day.

I visited my sister last night and was blown away by her lack of pain and ability to move her body. (unlike me, and I'm 10 years younger) the other two family members have stopped being housebound/bed-bound/chair bound, and have responded in the same manner.

Now, our local doctors in Indiana are taking notice of his unorthodox tests and precriptions and are recommending him to other patients.

I HATE to send this to you, since SO MANY people always offer "answers". I haven't tried him yet, because I'd rather keep "believing" there's a miracle out there, rather than try it myself with no improvement.

BUT, if you would be interested, I can put a link to him on your blog. I just don't like jumping in and pushing something that might not "be" a miracle for someone else.

Plus, that's a LOT of money, but they were willing to end it all pretty soon anyway. Me? I just can't take another failure.

All Consuming said...

This sounds like one of my posts! The amount of stress that admin staff alone cause patients who are waiting for treatment is phenominal. I know you know my experiences, I'm just sorry to hear you having such a grim time with them at your end. There have been many nurses I've wanted to strangle had I but the damn strength.When the main guy you rely on buggers it up too it's shocking. Give me their addresses and I'll send them poo in the post if you like. Virtual hugs sweetie, Michelle xxx

JOE TODD said...

Sounds all to familiar. At least the isotopes are from Iceland and not Iran..

Kerry said...

Why do the isotopes have to come from Iceland? What?
This whole thing is a nightmare.

Snowbrush said...

I'm taking this blog entry to Kirk's office today with the added request that he credit my account with him for the cost of the wrong test.

Momster said: "I hope you feel better."

Thank you, and thank you for the award too.

Rita: ""Good things come to those who wait" has not been the case in my life. Anything I've gotten that's any good, I've had to make it happen."

Me too. Patience is good; passively waiting for other people to do the right thing is either weak or naive, especially when they've given evidence that they're not trustworthy.

Sonia said: "Sounds like his nurses took the heat, or really didnt know they had lacked on customer service skills."

I think they deserved it, and I think they don't care about the customer. This isn't the first problem I've had with his staff.

Dana, go ahead and send a link. I probably won't publish it, but I'm curious about what this fellow does.

All Consuming said: "This sounds like one of my posts!

Except for the bills and insurance part.

All Consuming said: "Give me their addresses and I'll send them poo in the post if you like."

I would very much like that except they would freak-out; my government would think it was anthrax; and you would become the focus of an international scandal when your government turned you over to my government for an indefinite stay in Guantanamo Bay Prison.

Joe and Kerry. Kirk thinks the isotopes have to come from Iceland because Iceland has a lot of barren space in which to play around with radioactive materials. I have no idea if he is correct, but it sounds a little strange to me. In any event, that's where they come from.

Pamela Terry and Edward said...

I'm so sorry to read of your pain and frustration! I know it's probably useless advice, but do try not to worry about the worst case scenario. it so rarely happens. And whatever you do, stay off the internet!! It will have you in the grave!

Thinking of you!

Realliveman said...

Hi Snowbrush. I hope everything you are going through gets better. I feel for you.

If you change the way you look at things, the things you look at change

Strayer said...

Snow I hope you don't have this horrible thing. That would be horrible, terrible, unfair, wrong. You're smart, write well, have a nice heart, give the disease away, to one of the man bastards in this world.

I want to visit you sometime. Would you mind? I know you have a lot going on with your health so its ok if you don't want a visit. Let me know, eh? I won't be a downer if I visit, don't worry. I'm really kind of a fun person, although my own blog is dismal, because I write in it when something dismal not sunny is going on.

Teri said...

I am so sorry about your situation. It has to be extremely frustrating, actually I know it is. I'm having to wait another 2 weeks for another blood test before the doctor will begin screening for leukemia. This will be the third, each showing my WBC continuing to drop. So, as you are, I'm waiting. It's not a great place to be in, especially when there's as much pain as you're in involved.
I looked up Pascal's Wager as you suggested. Interesting stuff. I guess I'm a little behind the times.

Snowbrush said...

Pamela, Terry, and Edward said: "try not to worry about the worst case scenario. it so rarely happens."

So true. I know this, of course, but I still worry because the unlikely does sometimes happen.

Strayer said: "Snow I hope you don't have this horrible thing."

Hey, kiddo! The doc who I saw on Friday--the pain specialist--said he thinks I have syringomyelia, which is also a nerve related disease that makes pain-wracked invalids of its victims. The good news is that it progresses slowly in most cases, and there is a surgery that is effective 50% of the time.

You are most welcome to come down. Just drop me a line, and I'll send you an address and a phone number.

Teri! Leukemia! Oh, man, let's hope not. My WBC count is ALWAYS low, but then my sisters is too, so it's probably a familial thing. I'll be looking in on you to see how your test goes.

JOE TODD said...

I figured out why the doctor said the isotopes come from Iceland.. The volcanic eruption there will slow down (can't fly in the ash) delivery so the whole "timetable" will be thrown off. What do you think??

julie mitchell said...

Hi snow,
thanks for coming by my blog...I keep checking here to see if something magical or otherwise has decreased your pain. I'm so sorry...Question...the drs. seem to think you have these rare painful conditions..did your surgery bring them on? Or was this something that would have come your way no matter what?
hug, hug, j

pink dogwood said...

I am so mad at doctors - my mom has thyroid problems. to fix that they gave her something which raises her pulse. To fix the pulse they gave her something which gives her a rash and bad itching all over the place. They changed some medication which caused nausea and for two days she couldn't even hold a sip of water down - I asked mom to change doctors, but she has been seeing this one for past 25 years. She says no one can help her - they are all the same.

I am so frustrated for you - I hope all the scans come out ok.

Silke said...

Dear Snow! Thanks for your visit to my blog just now... I am so sorry you are having to go through this and wait for your test. Have you had it by now? Or had the Iceland volcano delayed the delivery of the isotopes? I hope you don't have this terrible disease, and on the other hand I hope you find out what it causing you such unbearable pain!

Snowbrush said...

Joe said: "What do you think??"

I've heard different things about those isotopes, Joe, so don't really have any authoritative information to provide.

Julie said: "you have these rare painful conditions..did your surgery bring them on?"

CRPS is caused by an injury--and surgery would qualify. I also know of a woman who got it following Lyme Disease. Syringomyelia can be caused by trauma or it can be congenital. I fell on my neck several years ago while doing a handstand, so that would be the most likely reason I would have it.

PInk Dogwood said: "they gave her something which raises her pulse. To fix the pulse they gave her something which gives her a rash and bad itching all over the place. They changed some medication which caused nausea..."

If she really needs the thyroid drug(s), what can the doctor do but give her other drugs to counter the side effects? What I'm saying is that you might not have enough information to judge the doctor too harshly. Of course, you're there watching your mother suffer more, it would seem, from the treatment than she was from the ailment, and I don't mean to minimize that. It's just that I've had enough experience with doctors to know that they rarely provide risk free treatments. Whether they prescribe drugs, surgery, or something else, they run the risk of harming or even killing the patient; and this is true of good doctors as well as bad ones.

julie mitchell said...

Hi Snow....thinking of you today...hoping to come here and see a new post that your nightmare dance with pain is finished, done, kaput..
hug, hug..j

Snowbrush said...

Hi, Silke. Hi, Julie. The pain specialist gave me a different diagnosis than the internist. He thinks I have syringomyelia, which is also a nerve related disease that turns its victims into pain-wracked invalids. However, it progresses slowly in most cases, and there is a surgery that is effective 50% of the time (they only do it when you're situation is quite bad because of the risks involved in going into the spinal cord and deflating the cyst that is causing the problem).

He gave me a prescription for a drug called Neurontin that made the leg pain disappear almost completely within two days. Now, I only feel it a little bit and only then when I'm thinking about it.

Leg pain combined with shoulder pain are symptoms of the disease, but the new drug hasn't helped my shoulder pain in the least, which I take to indicate that it's not caused by syringomyelia but by arthritis on both sides and by my recent surgery on the left side. It takes a year to recover fully from these surgeries, and mine were done four months and thirteen months ago respectively. Last night, I did my darnedest to sleep without drugs, but the pain was such that I took Dilaudid (a very strong painkiller) AND used ice. Even with all that I could only doze for a few minutes before the pain would wake me up again. I'm just hoping time improves things, although I suspect I'll eventually end up having a shoulder replacement on the right side at least.

I so appreciate you guys being concerned.

Just_because_today said...

Hey Snow, checking in to see how things are going. I dont want to say I am sending you prayers because you dont believe in them but I am thinking of you and hoping you are doing well

Chrisy said...

The first picture says it all doesn't it darlin man. Pain and frustration! So pleased you got some relief for the leg pain, pity it didn't put a dint in the shoulder pain as well. Am thinking of you.

rhymeswithplague said...

So then it's true what they say, it's always good to get a second opinion....

Snowbrush said...

Just Because Today said: "I dont want to say I am sending you prayers because you dont believe in them "

Hey, Sweetheart. I don't get bent out of shape about people caring for me and expressing their caring through prayer. But you realize, perhaps, that prayers for healing have been scientifically tested and shown not to work. You might argue that God got pissy about being tested and didn't cooperate, but for whatever reason, surgical and cardiac patients didn't get better because they were prayed for by numerous volunteers from all over the world.

Chrisy said: "pity it didn't put a dint in the shoulder pain as well."

Yeah, that pain is why I'm sitting her at 5:00 a.m. waiting for the Dilaudid to kick in although I only went to bed at 1:00. The longer I'm flat on my back (the only position I can sleep in at all), the more it hurts. I've gotten somewhat used to it though. I feel despondent at times, but I'm enjoying life well enough for the most part, especially now that I probably don't have CRPS. As bad as it can get, the other disease scares me less.

Rhymes said: " it's always good to get a second opinion...."

Hey, I've been missing you, Rhymes, although I know I've been remiss in visiting blogs lately myself. Before my surgeries. I saw four orthopedists and a neurologist about my shoulders. The first three orthopedists gave me different diagnoses, and the the fourth (the one I stuck with) agreed with both of the first two. The neurologist denied that I even had shoulder problems, and prescribed cortisone shots to the neck. I had four of those and got no relief so I went back to the fourth orthopedist for surgery.