Thursday, September 28, 2006

Does THIS sounds scarey to you?

I had what I thought was a "nerve block" done on August 30, 2006. It was to help relieve my pain, but it just made it two-fold... The whole experience was not good and I hope the feedback I provide to the hospital helps them to "rethink" the setup for this procedure. I have decided from this point forward I am going to follow my "intuiative" instincts. I know I have them, just gotta listen. If you wish to read the cycle of events, here is what I'm sending to the hospital.

Chaotic Nerve Block Experience

~ Upon arrival at the hospital I was told I needed someone to take me home after the procedure. Since I wasn’t told this when the appointment set up, I asked for the procedure to be fully explained to me. When making the appointment at my doctor’s office, I was given no information other than it was an injection involving some mild sedation and done under x-ray since it was close to the spinal cord. I have had several injections elsewhere on my body over the past 3 years. No one told me the sedation would be so strong as to prevent driving. I had to call my husband to come to the hospital once I got there.

~ Once I was settled into my room Dr. Ford (not sure this was his name, but he assisted Dr. Mathai with injection and looked a little like Benji on this year’s So You Think You Can Dance) came in and began explaining the procedure. Dr. M came in a couple minutes later and I introduced her to my husband, who was there by that time. Then she was called away. I was going to continue with the explanation of the nerve block with Dr. F, but he was immediately called away also. He never came back to finish the explanation. All I had been told to this point, other than what I already knew, was that I would be positioned in a chair massage unit, resting my face in a cushion. I am familiar with those units as I have gotten massage for over 20 years. Dr. F’s explanation went no further than that.

~ I was taken to the procedure room waiting area. While there I asked to go to the bathroom before the block. As a nurse was helping me to and from the bathroom she noticed my consent form had not been covered. She quickly had me sign it.

~ I was taken to the procedure room and transferred to a high narrow bed. I had to sit rather lopsided, however, because of openings in the table, so my posture was uncomfortable. A chair massage unit was rolled next to me. There were approximately 4-5 staff in the room, none of which knew how to position the head cushion. I knew more about how to do this than they did just based on my experience with massage. Some did mention they were "used" to lumbar injections. To me, this indicated a cervical procedure such as this wasn't often performed, The process of events led me to believe it...

~ Each time they positioned the unit, it collapsed. At one point they covered the face cushion completely with a towel. There was no way I could rest my face in the cushion and breathe with the towel placed like that. With my level of frustration and fear at this point, I just took care of it myself and fixed the towel so I could breathe. I kept trying to work with them and this unit. At this point I was uncomfortably sitting on a table with openings beneath me and trying to precariously balance my head on a massage unit that often collapsed and wasn’t steady. I finally refused to use it. My unease grew.

~ Next, someone rolled in a bedside table tray and placed a pillow on it. They asked me to rest my forehead on the edge of the tray, which was very uncomfortable, let alone the fact the tray rolled everywhere. I was close to tears and about ready to say “STOP”, get me out of here.

~ At this point, Dr. M walked in and questioned what they were doing. She at first told them to get maintenance to repair the unit. Then she actually repaired the massage chair herself and got it somewhat steady, although I still did not trust the device. Even she was not certain how to position the cushion. As I was feeling no effect whatsoever from any sedative they had given me (and problems had been arising constantly since I’d arrived that day and I was feeling like walking out of the hospital at this point), I asked for another shot of sedative hoping it would calm me. I was trying to stay positive and hoping it would go smoothly the rest of the way. I had so much hope for this nerve block...

~ I was allowed more sedative. However, the X-ray equipment didn’t work. Dr. M immediately told someone where to get another machine, which they did.

~ Finally, while trying to get positioned for the injection, Dr. M wanted the chair unit closer to the table. I assume it was so I wouldn’t be leaning so far away from her. They struggled with the unit for a minute. However, due to the table legs interfering with rolling of the unit, I don’t think they ever got it close enough to the table. After a brief struggle with the massage chair, I was asked to move closer to her side of the table. Again, I must mention I was sitting rather lopsided over holes in the table and it was difficult to maneuver. She then had to stand on a stool and reach over my back to my neck while I leaned to the other side of the bed, resting my head on a potentially unstable chair massage unit. I was definitely not in a relaxed, comfortable position. I don’t see how she could have been either as some of her weight was resting on my hips.

~ After the procedure one nurse asked me repeatedly if I had any allergies, to which I responded no. Her repeated questions didn’t actually connect with me until later when I remembered after the procedure I noticed both of my arms were red down into my hands to the knuckles, where the red stopped and my fingers were white. This went away by the next day. I don’t know if it had anything to do with the block, but feel I should mention it. Perhaps this is what the nurse noticed and was the reason she kept repeatedly asking me about allergies after the procedure. Another thing I noticed while waiting in recovery was that blood had seeped out around the needle. Perhaps this is common. I haven’t h ad that happen with IVs before. But since I really never felt sedated at any point, perhaps the needle became dislodged from my vein while I was bending my arm and trying to adjust myself on the uncomfortable table.

~ The pain levels in my lower neck have increased tremendously since that injection. The pain for which the nerve block was to treat has persistently increased. My migraines increased in severity. Hopefully, the return of such burning shoulder/arm pain, neck pain, and increase in severity of migraines is a temporary set back. (note: It’s 9-27-06 and my pain levels have not subsided,)

I have written all the above and am submitting it to you so that perhaps you will review your procedures for cervical nerve blocks at Southview. With the return of persistent high pain levels, it has to make me wonder if this procedure had been performed under optimal conditions, would my pain levels have returned with such vengeance? I believe the staff and equipment could have been better prepared. The procedure was also potentially dangerous. What if the unit had collapsed while she was injecting a needle close to my spine? I know I wasn’t comfortable resting the full weight of my head on the apparatus based on the “quick fix” Dr. M performed.

Frankly, I feel Dr. M was just working with what she had at her disposal. It was a chaotic experience where staff did not seem knowledgeable or prepared for a cervical procedure such as this. Hopefully, no other patient will have to go through what I did that day.

Monday, September 25, 2006

Do I Ask for This Stuff....?

Do I look like a Loser? Am I invisible. Do doctor's just NOT HEAR me... HHHHEEELLLLOOO. I have gone through a lot this past three years. Simple things gone wrong that could have been avoided. One after another it seems to one individual, ME. I will post what I have journaled soon. You guys can read it and determine if I'm crazy (tho crazed I am at this point) .

This is just one "little" example of what has become commonplace with me it seems. I had to find a new cardiologist because my old one retired. I get irregular heart beats which I sometimes treat with a med. No biggie, but I do need to be set up with a cardio or I ain't gonna get this drug... lol I wasn't nervous of having to go through a big discussion of previous history like I do when seeing new doctors about my shoulder. This appointment was gonna be a breeze.

So I prance into the office to what I felt was finally a "no-brainer" appointment. I take my blood test results from last year because my cholesterol has been on the high side for the past few years, upper 200's. I showed them to to the doc and also told him I tried a couple statins but they cause side effects of joint and muscle pain and with all the other pain I'm going through right now I just didn't need that. We talked about diet and even where to buy oatmeal...

He prescribed the med for my ocassional irregular heart beat (yeaaa), he prescribed a statin, gave me some 5mg samples and a script for 10mg and told me to cut them in half. The script would last me a bloody lifetime He told me to take it every other day and to eat oatmeal, lowfat diet, yadyada. He orders a blood lipids profile. Like I said - SIMPLE APPOINTMENT...

I get my blood test. I begin taking my statin every other day. Almost a month goes by and I get a letter (not the actual test results) in the mail. I am the poster child for cholesterol readings. My cholesterol is 174 and other things are low and within range. I'm like - uhhhhh, why am I taking a statin?

It turns ugly... I call the doctor's office asking for a copy of my blood results as I always do. But, because of all the things I've experienced in past few years I say "Why didn't you call me and tell me not to take my statin since my cholesterol is so low. What if I had been an elderly patient and didnt know by reading this letter that I could stop taking my statin." Nurse responds "The doctor didn't prescribe a statin for you." I argue with the nurse for a while and finally ask to talk to the Supervising Nurse. I tell her I am amazed that the doctor didn't even have notes in his file that he prescribed a drug for me. She said she would talk to the nurse and have either the doctor or nurse call me.

A few days later I get a message from the nurse. "The doctor says the statin is doing a great job and to continue taking it and to be sure to keep your follow up appointment in January." O M G I wasn't taking ANY statins when I saw he ordered the blood test. At this point, I called the doctors office and just asked for a copy of my whole file.

When I receive my medical file from the cardiologist, I'm not surprised to see there is no record of him prescribing Crestor, although I have the bottle with his name on it. It's NOT a good practice by any doctor to not record what he has prescribed to a patient.

The rest is ok until we get to the bottom and he says

"The patient has been AFRAID to try statins."
I grasped the paper so hard it began to shake. Growled at my husband. THIS is the kind of experiences I've been having with doctors for three years. What I told this doctor was that I have tried two statins, Pravochol and Zetia, and that because of the side effects I didn't wish to take them, especially at this time with all the other pain I'm having. I'm NOT afraid of them. It blows my mind away that this is what he heard? Do I have a big L on my forehead and doctors forget me as soon as I walk out the door and make up "stuff" based on the little detail they remember?
Needless to say, I'm looking for another cardiologist. However, I wanted whoever wishes to follow my story of medical disbelieve, to see yet another doctor who didn't know the truth nor the facts of the matter.
What is wrong with this world?

Saturday, September 23, 2006

PaIn pAiN PaIn pAiN PaIn pAiN PaIn pAiN

Actually, I wrote this in my Journal in the wee hours of the morning on September 22, but want to journalize it here. I have a software that will download my blogs into a PDF format which is pretty amazing. However, I do like to write also... it's cathargic But, here is my rantings of that morning.

This is why I think I need counseling. No one hears me. Not my doctor, not my friends, not my family. They say to forget about the past when I am ranting and raving about things that happened to me in the past. I say "there are some things that should be resolved in the past that are wrong and are making things worse for me today." They don't GET it...

My friends ask how I am. I look tired and often "mean" because of pain. Sometimes I try and tell them the stupidity of what I have been through, but they look at me as if it's my fault because how can one person keep going from one mess to another like I am. Am I making it up? I recently dropped out of a group I have played poker with for over 20 years. I called my best friend in the group that I have known since second grade and said "Sherry.... I am tired of facing my friends and putting on the smile and trying to explain my failure to "fix" myself. I tell her I am once again having a huge battle with pain and by evening, when we play poker, I cannot "smile" any longer." I tell her I need a few months away. That was on Monday the 18th. It is now the 24th. I have had no calls, no mail, nothing from than. Wow... the support of friends. Perhaps, they aren't really my friends afterall.

My Family - They do what they can. It's hard to imagine and understand the anxiety and frustration of someone in pain 24 hours a day. They have lives and commitments. I have gone through a lot of situations where I've had to research and learn about techniques, anatomy, medicines, etc. When I had the energy and brain power, it was rather fun and I like to challenge my brain and learn. I consider myself an intelligent person.

These days, with some of the meds I take, its a challenge to sit down and pay bills and I end up in tears when I try to deal with doctors or insurance companies. THIS is how my family can help. Help me with my battles. They can help with my research, my often futile calls to insurance companies and doctors offices. I can't think well enough for myself now. Maybe it the Lyrica and Topamax because Oyxcontin (20mg is low dose) never caused that. Or maybe its just sheer exhaustion from almost 3 years of continuous pain.

Hardly anything refreshes me anymore. This morning when telling my husband I wanted to get "OUT" this weekend, he immediately said maybe we can Geocache. I like Geocache, don't get me wrong, but it involves some hiking which I don't know if I can do right now as my legs are wobble when I walk now. Did he not consider this? He said "you can sit in the car then." I thought "oh yeah, THAT is getting out. Does he just not think? A day of out for me is perhaps a park or a long drive with a few stops along the way to get some ice cream or buy some books or little stuff we used to do.

Don't they listen to ME. They seem to want to help me. Ask me "What can I DO." WHAT do you need." Honestly, often I tell them. Can they not hear me? What do they hear? Often, when I have given my husband encouragement to learn about my shoulder, even printed information for him, he puts it aside and "skims" it perhaps. I want him to educate himself on what is wrong with me so he can ask questions of the doctors. I find my mind is tired. Sometimes I just want to throw myself to these wolves (doctors) and let them tear me to pieces w/o question.

Right now since I'm switching pain clinics, I had to get a release from my pain doc. She refused to continue my current dose of 20mg of Oxycontin, plus refused to tirate me, saying 20mg 2x daily wasn't much. ANOTHER story of abuse. I am going to report this one to the medical board. There is more to this story but I will not post at this time.

My Primary did agree to tirate me with 10mg dose that they DO make although my old pain doc just outright lied to me and said they didn't. I do think I am experiencing some symptoms. I'm not sure as I feel like crap a lot of days anyhow.

I know there are OTC things and vitamins you can take that help. I'm to tire to research through link after link after link and page after page after page of useless information. My old pain doc just blew off. So, I know have several weeks of limbo. No treatments for withdrawing other than using the 10mg.... I'll do it because I HAVE to.

I now MAKE myself eat to keep a certain energy. A little bit of food everyday is better than no food. Kim will encourage me to eat a little, but the more I say no, the less he asks. I just scrounge around and microwave little Michelina's during the week. It's enough. I think Kim gets angry when I tell him in the evening I don't know what sounds good.

He is tired of my pain, my tears, the sadass look on my face, my despair I don't blame him. I am tired of my PAIN also. Sometimes I just feel I need to get away to recapture my spirit. I'm spiraling down the drain. If I don't get a long break from this pain soon, I will die.

Sunday, September 10, 2006


I DREAD being asked this question. First of all, I know three-fourths of those asking me really don't give a flying F*, and if they don't know me and I'm having a miserable day I'll usually just provide the obgligatory "fine"... because that is what they expect to hear and will hear in their rush even if you say something to them like "terminal."

On the rare days when I'm having low levels of pain and feel like I'm part of the human race and notice that "Yes" there is such a thing as sunshine, flowers, and children's laughter, I will beam at them and say "I'm feeling great and having such a wonderful day. I hope your day goes just as well." And, the thing is, I TRULY wish them this. They often look at me as if I were nuts....

Some days when I have just pushed and pushed and am just SOOO tired of my pain and at smiling at everyone and making like I'm having an OK day in the old American Rat Race and that sweet, young, obviously care-free check-out gal says to me brightly "How are you today?" I just wanna stand there and tell her the bloody truth of my life, but then again there are usually people standing in line behind me and there is usually no time, so I just say "Fine."

Anyone out there want to ask me how I feel today? Hell, I'll tell you about my whole weekend...

Let me pause here. I had planned previously to write this Pain Journal in some kind of orderly fashion, starting with the past. I find my mind will not allow me the patience to do it that way and I find it more cathargic to write as I FEEL it. I may have to stop once in a while to explain a bit (such as now) so I apologize in advance.
Because doctors have not yet found what is causing my pain and my pain is not properly managed, I want to share my "date" with my husband just to let you know how little it takes to set me back.
I can't sit on my ass all the time, so I often push my limits to have some life. After a #5ish day of pacing myself on friday I managed to get out a few hours Friday night and pushed through a few hours until I passed my limit which led to a #9-10 and tears of pain/frustration by the end of the day. All I did was want to spend a special evening with my hubby. If I can do things to get my mind off pain, it helps at #5 levels, however, just the activity in itself will also increase the pain.
We laughed and talked with people, which I loved, because my pain has divided me from the human race. We used to visit an awesome book store called Books & Co often in the past, so we went there and browsed. Even before we went there, my pain was beginning to flare, so while my husband continued to do something we both so used to love to do together, I moved on to a specialty food store called Trader Joe's, and bought some little goodies. I could wait no longer to go home and had to hurry my husband along. He didn't get to visit Trader Joe's like we had planned. He didn't act upset, but to me it was just another instance where my pain interfered with his pastime. I knew I had to just lay down and give in to what was quickly heading to the #10 pain level. We got home and I quickly got ready for bed. I was going to just do my typical, take my nightly meds, curl-up-in-a-ball, lay very stil, and hope the pain levels lower enough so I can get enough rest before the next day's cycle starts.
Now, my hubby, who loves me very much (been married 37 years this month) feels helpless. He asks what he can do for my pain. Hell, I don't know what I can do for my pain. I have spent about 3 years trying to find answers. This 3 year search is why I began this blog because there has been much that has happend that I feel shouldnt have that has put me where I am today. But I veer from my original topic as I was afraid I would be doing if I didn't do this blog in order. But what he can and does for me is rub my feet and lower legs. As I have such high levels of pain in my right shoulder and back, it hurts to rub me where I have pain, so he will rub my feet just to give my brain some pleasure sensation in place of the pain sensation it has. This is what he did for me Friday night when we got home instead of my usual retreat to bed. Bless his heart.
I awake Saturday around 8:30, with pain levels which have lowered to 6-7. So, I take my morning dose of meds and hope for the best, which means me laying around all day doing nothing just to keep pain levels stable for the day.
Then my daughter calls and wants to bring my grandson over for a visit. You think I'm going to turn that down???? They come over and we have a nice afternoon visiting with our daughter and grandson. I hide my pain from her... They leave and I take a nap hoping to relieve my pain which is now heading towards the #10 zone again and has me close to tears. I collapse just because I'm dead on my feet from pushing 2 days in a row (I know it doesn't sound like pushing...). Rest for two hours, but it doesn't really help the pain. Hubby once again tries rubbing my feet and legs, which doesn't seem to be enough this evening. I even let him try to rub my back where most areas hurt to rub, but some little areas it feels good and I let him try.
I can't hardly sleep Saturday night... too much pain. Go to bed around 10:30-11. Awake around 2. Thrash for a while. I want to point out that with so much pain on right shoulder mostly, I havent been able to sleep on my right side for over 2 years. I will, at times, prop myself up so that my weight is mostly on my right hip and rest a while that way, but the pain sets in after about 15 mins and I go back to my left side. Around 4:30 am I finally went upstairs to my husband's bedroom and crawl into bed with him. YES, because of my pain and nightly thrashing, we have to sleep in separate beds in order to get ANY sleep. He said I snored a little so that means I must have slept for a little. He woke up and went bike riding this morning with our daughter. Things I can't do of course.
I took my morning meds, slept a little and awoke around 9:30 am. My pain levels this morning are starting out at 7-8, which is a VERY bad sign. My pain levels never go down throughout the day, only UP. Where am I going to be tonight? So, if I do talk to anyone today, I think I might really tell them I feel like shit.... if they should ask.
P.S. Writing this long post was painful. My right arm and side actually aches from the motion of typing. But, you know what? I forgot about the pain some of the time while writing it. Those few minutes of forgetfullness were worth the motion.