A Warm Wish For Fellow Pain Patients

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Sun, April 06, 2008

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I just wanted to say to all those that may be in pain this evening, my empathy goes out to you....only those of us with pain most every day, can understand what others with this too really feel like. My family and friends have said before to me that if they could only feel my pain for a moment, an hour, a day. That way they could understand me better. Once one of my brothers had a back injury and was in bed for 3 days, and said to me that he thought of me having pain 'even close to his', and having to deal with it in my life, was incomprehensible to him. Pain is part of my life; I try to face it and not run from it or take the first suggested course of treatment, although there are 'those' days, the flare-ups, that beat me down sometimes, and I need support from others that understand me and what I am going through. The every day pain. My life.

May you all have a low or no pain evening!

Shauna

http://shaunaschronicpainblog.blogtoolkit.com

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cyberchar

4/ 9/08 6:43pm

Shauna, your post reminded me so much about what my mother used to say about having children. If men had the first baby, the woman the second, no family would have more than 2 kids.

It is so true though. Having my son & his wife as my caregivers through the Coalition for Independence is sometimes the worst mistake in the world. If Mom is hurting and angry at just everything, it is taken so personally for them. Yet when I am being scolded like a kid, I'm supposed to just sit back and take it because their opinion is always the "right" thing to do. When one of them has a headache, or backache, it's okay to be snappy and impatient. But I am to always be in a good mood, no matter how upsetting my night might have been.

I know people say those things, but do you really think they would? I guess it would be like having a tooth pulled with novacaine vs being asleep. When the pain returns gradually it is easier to adjust than to have it all just "there" when you awaken. I guess that's why for so many of us, the pain came on slowly and gradually, fixing itself in deep so as not to be removed. My pain doc said that if he should remove the nerve to my discs that are causing such pain, I would have phantom pain. When he just stops the nerve, it gradually finds another way in to cause such pain.

You are so right. We have 2 choices - to live with it, or be totally looped while our liver and kidneys gradually quit working. So I just eat ice cream.

Char Cheesy

makeupgal

4/ 9/08 7:58pm

CHAR!!! ICE CREAM huh!!!??!?!?!?!? Innocent Me? Every night? Well, not Every night....Vanilla with chocolate sauce is my weakness, just Vanilla in any form!!! I am serious when I say that I look at my night ice cream as not just a dessert or treat; but almost as a reward for having made it though the day.

Char, what kind of pain do you suffer from? I am interested. The level of your Spine. I know what you mean about the nerve phantom pain. I had a few Radio Frequency treamtents, leaving pain where there was none previously, and permanently numb skin. That's the least of my worries as the 2 surgeries left numb skin around the incision and 'work'.

I hope your day goes better, and something I will remember forever as I was the main caregiver for my Father on Hospice.... He pulled me down gently to him, and said, "Shauna. Don't pass up the ice cream." That coming from my health nut father who had spent years depriving himself his favorite treat I remember making with him when I was growing up.

What he said is not just about our beloved ice cream Char, it was about depriving myself LIFE. He was at the end and suddenly was seeing things so clearly--simple life memories, but great pieces of Fatherly advice as he got ready to leave here.

But the best thing he ever said to me was as I was finishing his leg wrapping, (and already a nurse--Hospice Nurse of all things), I said, "You are the best patient I've ever had!" And he said softly, "You are the best Nurse I've ever had!" That exchange also had a lot of meaning behind it. He was so proud of me and now he saw me in action.

He was so full of wisdom, was it there before and he just didn't speak his truths, or did it have to be the timing....wait until he is at his end....then give him the power to speak.

God I miss him. Cry

Shauna

cyberchar

4/ 9/08 9:41pm

Embarassed

Shauna, your wonderful thoughts about your father brought tears to my eyes. Although we did have hospice for both Mom & Dad, it was my two sisters and I who did the physical work. Mom was so appreciative of any little thing you did for her. She tried as hard as she could to keep her sense of humor. She refused to die with us all around her hospital bed, which we had put in the living room. She waited until we all dozed off for just a second, and awoke to Mom's passing and Roy Rogers singing "Happy Trails to You". She had been putting up her arms and smiling and reaching for someone in heaven who was waiting for her. But we always remembered her warning. "You are going to spoil your dad and if, God help me, I go first, you'll have hell to pay".

Wow, she was 100% correct. Nothing was every right. He even accused me of trying to feed him to death one snow storm when I made him some fresh banana nut bread. He was a handful. Even at the end, his last lucid full day, he told me to call the others. I immediately call both my sisters and we all stood around his bedside. He told us how much he loved us, how beautiful we were...of course we were crying and wiping our eyes. Then, all at once the 3 of us realized he didn't know we were his daughters, he thought we were his old girlfriends coming back to see him. Although we were a bit taken back, it gave us a good laugh when we needed it.

I have degenerative disc disease and rheumatoid arthritis. The RA has spread into my pelvis which is unusual because that is not a moveable joint. The degenerative disc disease has caused bone spurs, scoliosis, and problems with most of my lower discs. The pain doc skipped his first step, which was always cortisone injections in your spine. Instead I started with facet joint nerve blocks. That is where they just block off the nerve rather than remove it. He told me the phantom pain was horrible. Unfortunately the nerve always finds a way, he told me, to return to the discs where it is in a narrow position with the discs pressing on it (or them) causing the pain to return. He did one side, then the other, unfortunately with minimal results. He then scheduled me for neurostimulation surgery, where the wire is actually woven around the spinal cord. Some type of discharge is supposed to fool your pain centers and lower the pain.

Unfortunately, it was necessary to get a clean bill of health from the psychologist that you wouldn't freak out if it was unsuccessful. The appointment was at a local hospital and he had failed to leave any messages for his staff. So the evening started with me & my son trying to convince them that I wasn't scheduled to be admitted to the locked mental facility. I couldn't understand why the nurse from his office went with us to then get the blood work. Luckily they decided I wasn't ready for lock-up. My son & I were busy talking and laughing while waiting. Anyway, before we could then leave, I was immediately summoned to the ER. They put me on a gourney and immediately started an IV. Apparently my kidney function, due to the diuretics and other meds from various specialists, was at 20%. He took me off most of the meds (not pain meds) I was on and told me to see my doctor. I was later told that if he hadn't done that, I would have been dead in a few days. But I ended up in the hospital and never did get the neurostimulator surgery.

My doctor also took away most of my pain meds, telling me my expectations were too high and I should only expect to feel 20% better. Then he said that my outlook was grim and I had maybe 5 years. Sooo, now I'm not a candidate for surgery of any kind. My hemoglobin is extremely low due to chronic disease anemia, my liver is barely working since the Enbrel they gave me for my RA last year turned my Hepatitis C which had been in remission for years, into full blown cirrhosis of the liver.

Shauna, I'm so sorry for going on and on. I live alone in a high rise for the elderly and disabled buy luckily I have my 2 sons, both in their 30s who keep Mom with ice cream & pop. My new favorite is the triple chocolate with white, dark, and milk chocolate. YUMMY! My almost 3 year old granddaughter said, "Nanny, did you put this white stuff in here?"

I know I wondered way off what you asked. The first post I wrote was better but my cheapo computer decided to just wipe it all away. Oh well.

My prayers & thoughts are with you. You are young and beautiful, it's so sad to think of a young woman suffering like you do. Take care.

Char Tongue

makeupgal

4/10/08 4:59pm

Char!!

We have so much in common so far it is unreal! My mom was on Hospice also, her hospital bed brought into her room, whcih she wanted...she had spent years as a member of the Hemlock Society, all for Euthanasea, and talked to me at length that I would never let her go into a Nursing Home, that she wante to be at her own house. Her Breast Cancer from decades before had never come back, but she did speak of 'bone spurs' growing out of her chest. She showed me one and I didn't know what to think. As she started laying on the couch more and more, talking of her first husband and how she should be getting checks from his Navy years, (huh?), and in a few days she was not making sense and couldn't write her name on a line for her life. My vivacious mother had become crushed bit by bit by a tumor the size of an orange in her lung, and 7 metasisied brain tumors. The day I took her to her regular doc to see why she was so 'different', was the day that her demise was told to us. Her doc saw immediately that something was wrong and she flunked her Neurological exam. It was a Friday, and he said let's do an MRI of her head on Monday.

When I drove up into her driveway, I opened her door and was walking her in, and suddenly this little 100 pound lady turns into what felt lik 1,000 pounds when she leaned against me and we fell on the ground in her front yard. It was so hard for me to get her up. That day, I called my 4 brothers and 1 sister to her house for a family meeting. We all were at her house, and she had to go to the restroom. My two huge brothers had trouble getting her off the potty, she was dead weight. (bad use of words there sorry). She became increasingly worse and we called her doc who said take her to the nearest hospital. She went in an ambulance, we followed. It is there that they worked her up and I saw that X-ray of the orange-sized tumor in her lung. She was to go for her head MRI later. I knew it was the end. My sister and I were the main caregivers for her. She went into a coma after going trhough an eating phase like I've never seen! I adored cooking for her, and to see her eat all her favorite things she had taught me. Once I went in to see if she was done, and her bite was on a fork, frozen intime on the way up to her mouth, she was deep asleep. From there it was on to the coma. But when we were all there, I swear I saw a flash of a smile when we were all just being ourselves, silly and laughing, the way she taught us to live. She passed away not shortly after going into a coma.

I miss her too more than I think even I know sometimes!!

Peace Char!!!! Wink

makeupgal

4/10/08 5:12pm

Hey there Char,

I forgot to address the nerve blocks you've had; I had those too. The Neurostimulator was my last and only hope to end my pain. I had it inserted, and here be glad you didn't have it done; I had to be awake to tell them what I felt where. My back is so full of Osteophytes and scar tissue from past 2 big surgeries, they commented as they inserted the wires. Then they would turn it on, and ask me where I felt the 'buzzing'. Not ever having it hit the spot in my back with the buzzing, they left it in anyway for the three day trial. I walked out with lead wires coming out of my back, at the top where the insertion was. I had a lady who was supposed to be always available to me the next 3 days, the Neurostimulator Rep. Well, when I plugged the leads into the programmer, I was innervated at the left leg and abdomen. I was buzzing in my tummy!! Cheesy I tried to get ahold of the Rep, who basically told me oh well, just play with it. She knew that it was a lost cause. And the other times I tried to reach out for help, she was not there. I was very very upset at the entire procedure. It was interesting to have buzzing tummy and leg though!! And good to hear for my own info that the scar tissue was visable to the docs, and they also felt it as the wires were not easy to thread down the spine.

My last hope equaled lost hope. Oh, I had the same nerve block also under Flouroscopy three times. I think you are blessed to have your kids to help you out. I want to get out of my house and into an apt. It is too big here for me and too $$$ with land taxes, gardener, blah blab Tongue . We shall see. Take care Char, and my hope for a day of low pain for you today.

SHauna

cyberchar

4/10/08 10:28pm

Blink Shauna, it is so odd that it worked that way for you. They must have used an old map without the freeways & detours, you think? I had previously seen a show on the Medical Channel about these woman who had the same procedure-except it was to help their ability to have an orgasm. I asked the pain doc if it was the same and he agreed, just that the leads are put in a different place on the spine. Unfortunately, the three women they showed had about the same luck as you did. Two had absolutely no increase and the third did, but she felt it wasn't sufficient enough to have the permanent lead in her spine. What the narrarator said was that they noticed that women were experiencing some type of stimulation when they were placing the lead in for back pain. So they used these poor women as guinney pigs (they were all in middle age) for a permanent sexual stimulant.

With that story on my mind and the awful response I got from the TENS unit I was not very thrilled about having it done at all. Unfortunately, this doctor had a specific schedule he would follow. No one was given a morphine pump until the neurostimulator had been tried and failed. When I saw what he was billing Medicare for the facet blocks, I knew then why he insisted on the neurostimulator first.

The first pain doc I went to said that with rheumatoid arthritis that the morphine pump would only be affective for 2-3 years, then I would have to start with break through meds. The thought of that long being pain free with the lower dose of morphine sounded great to me. But he looked at me, moved my wrist around a few times, said I had fibromyalgia and the best he could do was prescribe physical therapy and amitriptyline. I told him he was the biggest waste of my time I'd ever been through and refused to pay the $100 of the $250 he charged Medicare which they wouldn't pay. That much for a diagnosis made without checking any records, x-rays, etc. In the next room was some poor old man in final stages of cancer. The doc was rattleing off about this morphine pump they were putting in and he kept saying, "But I don't even hurt!". I guess the doctor figured his 2-3 months was more important than my 2-3 years.

However, when I was last in the hospital and overdosed on the morphine dosage they gave me in the PIC machine, and my own pain doc never even walked down the one floor in the hospital to check on me, I decided to just go along with my GP and stay on oral meds. I would still love to give the morphine pump a try, guess it's just not in the cards for me.

I hope you have a wonderful weekend, and that if someone asks you the eternal and totally worthless question of "Does your pain measure one to ten, with one being no pain and ten being the worst you've ever had?" you can truthfully say "two" then go have your vanilla ice cream with chocolate sauce!!

My thoughts & prayers are with you,

Char Innocent

Val-mac

4/12/08 5:45am

Makeup Gal, I hope you are just kidding about the makeup? You are too pretty to wear that stuff. I dont. Anyways, I could relate to your post and thanks so much for taking time out to share your story it helps all of us as each one of knows ---sometimes we feel that there really arent too many people that can even relate to what we deal with each and everyday. God bless and keep in touch, Valmac aka Valerie

makeupgal

4/27/08 6:27pm

Dear Valerie,

Thanks for stopping by and your sweet comment about the makeup. Before I was a nurse, I was an Esthetician since age 18, and I am a professional makeup artist, and also I'm a certified Derma-Technician--permanent makeup and also medical procedures such as after breast cancer and reconstruction, I can help a woman feel more like just that....by 'making' her an aereola and nipple where there was none or needed color/size help. So, needless to say, I have always had a passion for makeup. Used to wear it every single day, wouldn't even go to the corner store without doing something to my face.

I guess it's b/c I've gotten older that I really don't care anymore, although I did discover mineral makeup, loose powder, and it is so light that if you do need some evening out of your skin, you don't feel it at all, and....you can sleep in it!!

What is your pain issue Valerie???

I wish for you a day of low or no pain!!

A Warm Wish For Fellow Pain Patients

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