Quote From: profderiendear djmatt --
sorry for the delay. i took the picture out again -- i cannot find the one i want -- it is not so disgusting! i can only imagine the loss of appetite out there...
actually, i want to put a photo of my cat up -- but he is being cagey.
okie-dokie -- to your questions. it is not complicated but it does require keeping certain things distinct.
it all began with some problems that shouldn't have troubled a woman in her late 20's -- heart failure, kidney failure. we sort of just adopted an attitude of "managing" my health until answers became apparent.
finally -- a lupus diagnosis. even before the diagnosis, they had begun treating me. prednisone is my middle name -- a disgusting drug (for *me*! i am steroid dependent now -- i have glaucoma, steroid-induced diabetes, and a non-functioning adrenal gland.)
theories abound as to whether corticosteroids can be blamed for the bone death of avascular necrosis (AVN), also known as osteonecrosis (ON). the latest opinions are beginning to hypothesize that AVN, itself, is an auto-immune disease and not just a terrible side effect of steroids. i don't really care anymore, seeing that i have it in every large joint, some long bones, and even some small joints. the only "treatments" are surgical interventions. if caught before the bones are completely dead and still having a good blood supply, things like grafts and strategic drilling can be tried. ultimately, many joints have to be replaced. if the "stage" of AVN/ON is high at the time of diagnosis, there are fewer options. unfortunately, unless caused by trauma, the first symptom is increasing pain and rapid disability -- and sadly, that can also mean the stage is too advanced for grafting or core decompressions. the pain itself is a result of gas building up, trapped in the decaying bone. believe it or not, some people are left without a joint. that just makes me shudder, though my hip surgeon assured me it can be done, can be lived with -- of course, the option of not living with it is distasteful!
i have had both shoulders replaced -- one is a "hemi-", the other a total. my left hip is pinned together, the right hip is a total replacement. my right ankle is a hardware store. i desperately need more surgeries but i have become a poor surgical risk.
ready for more? take a sip of coffee! if you are not watching the men's wimbledon final, give it a gander while i prepare part 2! THE SAGA OF REFLEX SYMPATHETIC DYSTROPHY, CAUSALGIA, COMPLEX REGIONAL PAIN SYNDROME TYPES 1 AND 2. (you might want to make a run for it...)
i have told this story before but i do need to keep telling it. why? well... i do believe that i suffer from post-traumatic stress disorder (what's another syndrome among friends?). so please bear with me if i get upset, overwraught, melodramatic, sardonic...
in 2002, both shoulders had deteriorated to the point where i could do little but sit around and cry. given that my hips were also shot, this was not a happy time. if the shoulders had just hung in there, i could have used them to self-propel, instead of needing a cart or a power chair to get around. things were grim.
the issue of adrenal failure was a new one to us -- i had had 2 sudden addisonian crises and was blessed indeed to have lived through them. when the adrenals fail, the body cannot regulate some of its most important functions -- blood pressure, temperature, blood sugar. any excessive "stress" on the body or on the mind can create the need for more cortisol and without an adequate supply, the body quickly goes.... berserk! i had a few infections that would have been minor problems (a urinary tract infection, bronchitis) but they became life-threatening in a very quick way because i lacked the necessary hormonal arsenal to stay in synch.
as we prepared for the shoulder replacement, everyone was acutely aware that this problem needed to be avoided at all costs. they do that by drastically raising your dosage of hydrocortisone (solumedrol, etc.) to prevent the stress of surgery from causing a crisis. my internist -- my go-to guy! -- even had written in bolded letters on his pre-op assessment: SHE SHOULD BE FINE PROVIDED STRESS DOSE STEROIDS ARE GIVEN...
we met with the anesthesiologists, the nurses, and, of course, the almighty surgeon -- making double and triple sure that we were all on the same page. they treated us like we were idiots.
anesthesia told me what to take and what not to take on the day of surgery -- i was to hold off on the usual doses of hydrocortisone and prednisone so that they could regulate everything through an i.v.
let's see. the comedy of errors went something like this:
i check into pre-op. they can't get an i.v. in. they also can't locate my surgeon. it takes them almost 5 hours to find him. in hindsight, i can see that i had already begun having adrenal insufficiency symptoms (vague -- backache, diarrhea, emotional lability, lots of flu-like aches). the pre-op suite changes shifts, so maybe there is a lack of continuity of care (?). surgery goes well. i have a difficult time in recovery -- my blood pressure stays too low, i am whining non-stop about pain, the nurses are pretty sick of me. by then, it is late in the evening -- after 10 pm. i had checked in around 7 that morning. i wasn't moved to an orthopedic room until around midnight. the nurse there charts that i am a complainer, a whiner. by morning, i am unresponsive and in full addisonian crisis. off to i.c.u. they call my partner and he comes running -- he asks if i have had my steroids... he gets a blank stare from the "hospitalist" that is handling the emergency. they insert an arterial line, start supportive measures and get in touch with my go-to internist, who politely does not tell them all to kiss their butts good-bye. it was very touch-and-go -- heart failure, infection with high fever, kidney failure. no one can find you-know-who -- the stellar surgeon.
i start to respond -- very scared, not understanding what was going on. a few days later, my right leg turns cold, blue, and painful. they had mauled the arterial line insertion and i needed an emergency embolectomy to remove a bunch of clots. because i was still so sick, they couldn't use general anesthesia. now... that was an experience i would like to forget! after about a week in the unit, "my" nurse greets me one morning saying that i was going to get up to the bedside commode.
she was very slight. tiny really. i was not. she was deaf and wore a hearing aid that bothered her because it competed with the many sounds of the technology in the room -- monitors beeping and so on. that morning, she took it out. i wonder if maybe it was me that bugged her.
i was not thrilled at the idea of getting out of bed -- so much had happened. i voiced my fears. i also said we needed more bodies in the room. my left arm/shoulder was in a tight sling and i needed my right arm to help steady myself. she didn't have a way to hold onto me.
so, of course, i fell and broke my right ankle, hit my head on the bedside table, slammed the just-operated shoulder into the bedside railing. we know now that at that minute, big damage was done to the following nerves: ulnar (the left forearm, hand), peroneal and plantar (right leg).
she shut the door. she told me to get up. that is the one detail i cannot get out of my mind. hissed it, really. "you did NOT break your leg, get up!" of course, she was panicked -- but i was more panicked! i actually tried to get back on my leg. i have never felt such pain.
finally, two other nurses arrived and they hoisted me back into bed. i began having gastro-intestinal bleeding a few hours later. a link? who knows.
trauma like that can be the initial cause of COMPLEX REGIONAL PAIN SYNDROME (crps). in the past, the disease had two designations, depending on whether or not nerve damage could be diagnosed or not. if there was no clear cause (ideopathic), it was called REFLEX SYMPATHETIC DYSTROPHY (rsd). if there was demonstrable damage, say via an emg, it was called CAUSALGIA. (causalgia was coined during the civil war, when surgeons began to notice the terrible and unending pain some soldiers inexplicably went through after being shot.) the theory goes that the initial pain insult causes a cascading and unending sympathetic nervous system response. and because of that -- pain begins and doesn't go away! changes to skin, bone, connective tissue, änd blood supply eventually transform the area into what i call a "petrified wood" effect.
CRPS has now replaced the RSD and CAUSALGIA distinction of yore. it is divided into 2 types, though, and they essentially preserve the distinctions!
on memorial day in 2002 (date of the fall), i developed CRPS type 2 within several hours of the trauma -- we just didn't know it. no one let that possibility out of the bag. i had another surgery to "fix" the right ankle but had to wait over 5 days for that because of the internal bleeding that became a real problem.
unbelievably, there were 2 more instances where they failed to deliver my i.v. steroids. my endocrinologist happened to show up one of those evenings. i was having the flu-like symptoms again and feeling generally crappy. he was so p.o.ed. before giving me the injection, he had them draw a cortisol level -- i think the nursing staff was arguing with him, saying that i had received the medicine. interesting that the cortisol level in my body turned out to be almost non-existent!
well, my narration has just gone to pot, hasn't it?!
if CRPS is diagnosed and treatment begun withing 3-6 months (time period varies from specialist to specialist), there is a good chance for recovery/cure. the standard treatments are sympathetic nerve blocks to relieve the pain enough to undergo intensive physical therapy. what we need is a RESET button!
the pain is the most bizarre expression of the disease and those of us with it tend to start spewing forth a wide variety of adjectives. burning, stabbing, electric, exquisite, never-ending, pinprickly...
the movement of air around my leg can send me into despair. the weight of a sheet. a touch to the nail of my small finger makes me cuss like a sailor.
the temperature differential between my right leg and my left the day i was diagnosed was 10 degrees centigrade. that is A LOT. it may be that i got the worst scenario because my bones in that leg were already dying from AVN, i dunno.
late last year, i broke my little toe on the left foot. no big deal! we taped it to its neighbor and went to bed... and woke to find my left leg rivaling the right. a deep purple, cold, incredibly painful. overnight, i had developed CRPS -- what they call a "spread," even though that is probably the wrong term. what is interesting is that i now have CRPS TYPES ONE AND TWO! i mean, i can't imagine that i had any nerve damage from a simple broken toe.
cosmic laughter!
not meaning to belabor the point... there really needs to be some assistance with all of our pains and disabilities. people with CRPS have been known to seek out amputation. it may be an urban myth, i dunno, but there are stories of self-mutilation. that there is a high rate of suicide i know to be true. i can relate.
okay... that is my longwinded, emotional hommage to my acronyms! SLE (lupus), AVN (avascular necrosis), and RSD/CRPS. if anyone is still reading...
thankyouverymuch for the opportunity to face my demons one more time.
i went and read a bit at your site dedicated to the elimination of child abuse. your ambition is showing! what came to mind? the goals are lofty and maybe over the top. i hope you can connect with some orgs that are already functional and that can ground you. what kind of grant writing do you do?
the third set tie-break is underway... just because i want more to watch, i am pulliing for nadal! the bad boy -- he has practically given the match away to federer...
ciao!
prof
Hey, Listen. I am very concerned, interested and willing to learn more about your conditions. I am really sorry that you have gone through so much and starting so early in life. Sometimes we think, and ask God, why me? And honestly, I do not have the answer to this, or a lot of other questions. I am, in case I didn't say before, a simple 46 year old father and grandfather, happily married for 27 years. and I am just finding my way back to the Lord.
I feel that my primary ministry is the Child Abuse issue. But I think that God has a lot of work for me to do. And in cases such as yours, I am very concerned, and have a sincere heart-felt desire to at least try to give some comfort and support, if that makes any sense. And I am always adding people to my prayer list. And I believe that God can intervene in certain situations.
But, even as a minister, I cannot understand how people such as you can be allowed to suffer so much. And God is convicting me to expand my ministry to do what I can to help people who are suffering in a variety of ways. I just don't know what to say sometimes, and I will have to pray, and to study your conditions so that I can have a better idea of what's going on.
I do have adult ADD, and sometimes it takes a while for me to read through some of these posts, and to comprehend everything. But I am committed by virtue of my ministry and convictions to do what I can to help others. I love people, red-yellow, black and white, as I say about the children, and this is not even an issue to me. But the point is, diversity is my passion. I want the whole world to be in harmony. And that's no a realistic ambition in my life time, but sometimes it takes people taking an aggressive and assertive approach, and believing that all things are possible with God.
I do not mind at all the length and details of you post(s). I am glad that you have educated me on your conditions and I am always willing to listen, and at least give you and others a cyber hug, in the name of humanity, and in the name of God. I really would like to understand more, and since I am not a doctor or professional in health care, I can at least talk with you and others via the message boards, and at least try to offer some encouragement and hopefully a tad of comfort. We are all God's children, and I just feel such an attachment to those who are suffering.
A lot of the terminology you use is over my head, but as I said, I will attempt to educate myself so that I can have a better understanding.
I totally realize that some of my posts, especially with the Child Abuse campaign are very optimistic. And I do realize that chances are, Child Abuse will be around for many years to come. But my intentions is to advocate a campaign with ideals that are non-traditional and to raise money, to get the attention of the scientific community and the Federal and State Governments to take a broader look at the possibilities available with technology and science, and to put this campaign much higher on the priority list.
I keep pictures handy of several of the child recent victims who were abducted, molested and murdered. I have watched some of the trial in the Jessica Lunsford case, and it really angers me that this man was so cold-hearted, sinister, and had a no regard for this innocent child. I cannot contain myself. Sometimes emotions are to leave an impression in our hearts and minds. And although it is painful for me to see these cases, they are all the more reason for me to aggressively promote this campaign, and to lobby for changes in our legislations that would increase the search and rescue efforts of abducted and missing children 100 fold. That is why I say the communities are so important. We must become active, those who are able.
I have such strong convictions, and this has been inside me since I was a teenager. This infuriates me. I want it to STOP. And as in the concrete business, which I was in middle management for many years, we had a lot of safety meetings. And although we say the statistics, and there was an "expected" number of accidents involving concrete trucks, our goal was always zero.
My goal for child abuse is ZERO. And will this happen in my life time, probably not. It is attainable in the years to come. maybe. Can we reduce the number of cases by 75%, yes, this is totally reasonable. Our government and society has to take the same attitude, and make a commitment to do so. This is possible.
Enough for now, and I will check back later. I hope you have a good day, and I am praying for you.
djmatt
