Walking Through The Day With a Pain Warrior


cropped-403280_2802154889132_1116380604_33089434_1120302605_n.jpg

This is not just a story about me, but a story that many pain warriors live through on a daily basis. I know because I talk to many of them often.  Much of this is “our story”. …..I awaken each day; the first thing that I do is cry inside of my head. My body lay still too long.  Four hours is too long! I feel pain and don’t want to get up, or move because I know it will hurt. I’m so tired of the pain. I lay there and contemplate rising to my feet.  I hear my husband call my name.  He always says “Hello my Love, Good Morning! Time to rise and shine!”  He tells our Kitty, Luna, to come and get me. She always listens to him and she enters our bedroom and meows for me to get on my feet. Still lying there, I think about the day ahead and wonder if it will be a busy day?  Will it be one in which I have to do a few things? Or will it be a day that I can be a bit quiet?

After 40 minutes has passed from the time I took my medication, I attempt to get up.  First I sit up and I feel the pain in my back. The Degenerative disc disease, Scoliosis, Spondylitis and multiple herniated and bulging discs, make it almost an impossible feat. The medication does help. It takes the pain down from a 9 to about a 5; and I finally get up.  But then there’s the stairs to tackle. I hold onto the rail and then I lean on the wall. I fumble my way down the stairs, as my cat scampers past me, ready for her cuddles on my way to the kitchen. First, I sit on the ottoman and pet her for a few moments and then it’s time for breakfast. My husband has already made the tea and has my toast ready to go.

He goes to work and I go to my chair, my recliner. In my spot, there is a pillow and a blanket and a settle in for a look on the computer.  What fantastic things have happened overnight on Facebook, Twitter and Instagram? I answer a few questions, maybe I help a few people in my support groups? People always volunteer to help me with my groups because they are becoming large for one person to handle on a daily basis. People mean well, but they are also in pain and have much going on in their lives.  Eventually they stop helping and I’m alone again.  I don’t want to give up, because some people just need someone to listen, anyone.  I like being that person. I want to help and do something of value with my life.

Maybe after awhile at the computer, I will either write a blog post, an article for the National Pain Report; or maybe I’ll sign a song that day.  I love the beauty of ASL and the way the emotions come out of my body, hands and face. I can feel something other than pain. Until I’m finished; and then the pain is worse.  I have to rest and take more medications. My husband comes home for lunch because he says that he likes to check in on me.  We’ve been married for 20 years and he always comes home for lunch. I am one lucky lady to have such a knight in shining armor at my side. He never complains about doing so much. He cleans, cooks and does the laundry; after mowing the lawn and fixing whatever needs repaired in the house. Still, he never complains.

In the afternoon, I may visit my granddaughters and my daughter who live only a few blocks away. I’m still able to drive for “personal errands” and for about 10 minutes at a time. If I visit them, I get lots of hugs and kisses and more love and life than you can even imagine. They are rays of sunshine in a world of pain.  They don’t understand that I am in pain and that’s a good thing for now.  I like to light up their faces and give them love and receive that same love in return. My daughter and I may do a couple of errands or have a coffee and chat. It seems like a nice day, right? It’s true, it’s the nicest day you could imagine. Then I come home and I sink into my recliner and sometimes my cat will come and sit with me.  Her love is unconditional and she seems to know when I’m in more pain than usual. She gives me comfort and love, unconditional love.  By that time it is 3:30 in the afternoon.  It’s been a full day and my pain has risen from the activities.  I can’t do anything else.  I don’t have the energy to make dinner anymore. The fatigue is deep and lasts for long periods of time.  I rest and sometimes I nod off in my chair. The cat jumps off of the chair and the back door opens.  My hero is home! The love of my life and my forever soul-mate comes home from another day at his job as a teacher. We muster up something to eat for dinner. Mostly, for him; because eating has become something difficult now. It’s not fun or anything I look forward to anymore. I have IBS, S.I.B.O., and Gastroparesis. There’s so much I’m incapable of eating now.  If I just throw caution to the wind, and eat to be social or “fun”; I suffer more.  There’s the nausea, constant nausea and burning whether it is high or low in my stomach; it’s awful either way.  Then if I eat just a tiny bit too much, I will be sick for hours afterwards. This is something that others don’t see or understand.  My husband sees and watches it from the other side. Then there are the others who I “talk to” on the other side of this computer. Many of them truly do understand.

Then, my friends; it is evening time. The sun goes down and we watch some Television together and maybe read or “play” on the internet for awhile.  All too soon, it is 10:30 pm and my husband goes up to bed. He. has to work in the morning.  He kisses me goodnight and tells me not to stay up too long.  I tell him that I will come to bed as soon as I feel like I’m able to sleep.  Time goes by and it’s one in the morning, then 2:00 AM and 3:00 AM.   I start to nod off as I’m messaging the other “night owls” who are my fellow pain warriors. They are with me at night, because they too cannot sleep either.  We try to give each other support and the strength to persevere.  Finally, the sparks of chatter start to diminish online.  I too, feel like I truly want sleep to come and save me from my body and the pain that is within. Much of the pain is physical, but there is no lack of mental anguish.

***I come from a family that doesn’t know or care that I exist. They are called “M.N.’s” or Malignant Narcissist’s.  I try to stay away, keep my distance. For some reason, I cannot “let go” totally.  Maybe I feel that I owe them something for bringing me into this world. But truly it’s been nothing but pain and abuse as far back as I can remember. Then the failed marriages because I didn’t know how to feel love until I met my soul-mate, Craig. We’ve been married 20+ years now. I thank God for him every day because nobody has ever truly loved me until I met him. Some people ask me why I always go back for more abuse and more pain? I guess he’s still my father and one of my two brothers is still my brother. The other one, I cannot even discuss and won’t.  My oldest brother used to try and protect me, but one day he stopped.  It was the day that I told our family “secrets”. That is when my father took his revenge and turned everyone he could, against me.  I’m not sure why they listen to him? I’ve always been kind hearted, loving and as good a person as I can be. But now the entire family, including dozens of cousins, have shoved me “under the rug”. I am an an outcast.  None of them will talk to me or even look at me if we meet.

I don’t get invited to the very very large family reunions.  Even though I was the only one in my nuclear family that ever attended those functions.  I always took my children to them while they were growing up. I wanted them to have a sense of “family” and belonging. I helped my one cousin, the only one who is the same age as me. She is 6 months older and I always got her “hand-me-downs”. I went for food when she had her big garage sales. I helped her when the family turned against her as her mother was dying. I told her not to let them “punish” her and told her to hold her head up high. They were so mean to her because she couldn’t let her mother come and stay with her when she was very sick and dying. I felt her pain as she told me the stories of her abusive childhood;  we could relate to one another.

But **one day, in 2002, I was in a terrible car accident which started all of the physical pain. No one came for me except my husband. Again, my knight in shining armor there with me and at my side through thick and thin, good and bad.  ***My cousin said she couldn’t come to our house and sit with me for awhile so my husband could do errands. I couldn’t be left alone as I could not even go to the bathroom or dress/undress myself or.    cut my own food. She said that “seeing me in so much pain, made her depressed.  If she was depressed, then her family would suffer.”  Therefore, she could not see me anymore. I’ve not seen her again except at a couple of funerals, but she won’t even look at me. ****I went to my favorite Aunt’s funeral yesterday.  It was in a church and my dad didn’t come because he would have had to have been “nice to me”; and then they might know that we’ve tried to “talk a little bit now and then” again.  Only one cousin spoke to me and only one other even looked my way and smiled.  My Aunts children were welcoming. They knew that their mom and I had a relationship. My cousin, her daughter, told me “mom wouldn’t have had it any other way”; when I thanked her for “letting me come to the funeral”.

**I watched my family all sitting in the same church, singing “Let there Be Peace on Earth”. While the words came out of their mouths, there was no peace in that room.  Only a gathering of many who really don’t know each other anymore, but had one thing in common.  That one thing was the love for a woman who knew how to live and how to love. So you see, there is physical pain and there are other kinds of pain. Some of these exacerbate the others. We just have to surround ourselves with those who want us in their lives.  Those who want to give and receive; or share love with us.

When my head finally hits the pillow at night, I lie down and listen to my husband’s breathing. So glad to hear those sounds of life and know that this person beside me has truly shown me what real love is all about.  I never knew if I would have that, some people never get to know it.  People who are “damaged” like me, have a hard time very often knowing the difference between real love and hurtful kinds of “twisted” love.  I’m fortunate to know this man and lucky to have his love and to have him to love. I try to let the sleep come to me. Relax, sigh and listen to the breath sounds and the sound of the cat purring next to me. This is my real “medicine” in life.  They, along with my children and grandchildren are what makes me happy. I try to remember these thoughts as I fitfully sleep for a few hours, only to wake up to the “fear” of getting up on my feet once more again tomorrow.

 

 

 

 

The Cardiac Catheterization From Hell!


part of the floral arrangement that was delivered to my home afterwards from my dear friend and “sissy”

the note on the floral arrangement…this meant everything to me!

Hello Luvs,

Awhile back I’d had a Cardiac Cathetarization done; or “Cardiac Cath”. It was August 30, 2011.  I had visited my Cardiologist, the one who’d known me since 1991. He told me that he saw some suspicious “stuff” in my stress test from the week prior and he wanted me to have a Cath done. I was really scared because he told me that HE wouldn’t be doing the procedure, but his ‘new young Dr friend” that he just hired to work with him, was going to do it. I told him how I’m a ver difficult and/or “special” case with the chronic pain, RSD/CRPS and all of the issues I have. Also, my cholesterol was always at 170 and never went up but this time when he did the test, it was about 204 or something like that? Frankly, I was not totally “freaked out ” by 204!! But for some reason he was??

Well let me tell you about my procedure and I’ll try and post a little video if possible so you can get a glimpse of how the procedure is supposed to go. First of all, when I was in the pre-op room, on a gurney; the nurses were GOOGLING “RSD” and “CRPS”. They had no idea what it is! Then Dr. Trevax (sp?) came in and HE also had no idea what that “painful nerve disease” is that I was trying to talk to him about prior to my procedure!! He started to GOOGLE CRPS/RSD too!! Can you even believe this in the Century that we are in? He was a very young looking “new” Dr so he should’ve known about it as it should’ve been fresh from Medical School! He giggled and talked with me as if nothing was going on and I was there for a “good time” or something. I tried to explain to him /them that I was on quite a bit of Fentanyl for my chronic pain/nerve pain issues and my CRPS, along with the other pain issues. I now know for a fact that it went into one ear and out of the other!

My procedure was a bit different right from the beginning because #1: there was no anesthesiologist to be found anyplace in, around or near the O.R. that I was in! #2: I was not “out” or even a bit “drowsy” nor “sleepy” in any way, shape or form!!!  In fact, I was very much awake and it was like a nightmare from hell being strapped down to a a gurney, unable to move at all and the whole time nobody could hear my screams!  I felt totally “out of control while they were not paying any attention to what I was telling them. They were talking and joking around and I lay there wide awake and not even in the least bit of a “twilight” sleep or anything!! I started to scream uncontrollably saying “I can feel this!!!…I’m not asleep!! I’m not even drowsy! ….Hey…I’m still awake and I can FEEL everything!”  It was horrible and I already suffer from PTSD and that did not help my fears or anxiety levels at all! I also suffer, as I’ve mentioned, from the horrible neuro-autoimmune disease, which is very painful. It feels as though I am “on fire” and as if someone has poured “gasoline” on to me and I feel like I’m going to spontaneously combust or blow up or go “poof” in flames, I’m just so burning up hot so much of the time!

I begged and begged for them to put the catheter up through my groin area because I knew if they did it in my arm/hand, that would cause much more spread and problems for the pain disease, CRPS/RSD. I begged and once again, I was not listened to at all. The Dr decided that it’d be easier for him and he THOUGHT I’d heal faster if they put it into my right wrist. Well NOT true! He was wrong and it was HELL for a long few weeks. Not only was I having to recover from the pain of the needles, Catheter and scope or whatever they use all going through and invading my body and bothering my nerves so as to upset my RSD/CRPS so that I would then have to flare up and suffer for a couple of weeks or longer.!!  I ended up with painful swelling, bruises, redness and extra horrible pain from not only the pokes and shots etc. but from the catheter site. They continued on choosing not to listen to me and they went in through my wrist instead.  I was not asleep, nor was I even drowsy in the least!! I continued yelling to them that “I’m awake!!”…”I’m not asleep, can you tell??” …”It is hurting me terribly and it hurts like Hell, please stop and let me be somewhat “out of it”..” I just kept trying to tell them and in the background all I could hear was the young Dr. Trevax saying “1 mg Versed, or 1mg Dilauded” and he said it several times but nothing was happening to me. Maybe I was so afraid that I wasn’t allowing the medicine to work?? All I know is that I did NOT want to be awake for that test and I was totally and completely awake.  That is until they were wheeling me out of the door and into a “post op” room.  Then they wanted me to hurry up and go home but I fell asleep for 4 whole hours finally after they were done and they’d or someone listened to me and gave me enough to work and then I was “zonked out” for 4 hours straight!!!

I don’t think some of the little or smaller amounts of those big duty pain meds or whatever they were using with the pain meds, were working because My body had already at that time been used to the Fentanyl patch and the transbuccal Fentanyl. I don’t think anyone had seen those or heard of those transbuccal Fentanyl meds either and that’s why they didn’t listen to me. But I think it’s because my body had built up a tolerance and the small amounts that would normally work on a person of my (at the time) smaller stature, just would not work for me due to my medication regimen.  Also because of the Neurological pain, of my chronic nerve pain disease, “CRPS/RSD”, this caused their meds to not work well on me. Though had someone listened  to me and really realized how much medication that I was really taking under my Dr.’s care, they might’ve figured it out. But no way, no how was anyone listening to me that Day!

It was the Cardiac Cath from HELL!!! I would assume that this would not happen to you if you are going in for a Cardiac Catheterization.  Mostly, because they make sure that people are “out of it” in a Twilight type of sleep so they don’t have the anxiety and terror and pain that I experienced! I was just one of the Unlucky ones, I guess!

The worst part, aside from the horrible extra pain, then the 2 weeks of flares from my  CRPS; was what happened when I went back to my Gen. Cardiologist to explain to him the bad experience that I had. He just listened for a moment and then yelled at me and said very loudly “STOP IT!!”  I started to tear up and cry a bit because my normally gentle and caring Doc had just yelled at me! He yelled at me to “get over my past”! I guess he thought I was upset about the way it went because it brought up some bad memories and feelings. I was but that was not why I was telling him! I was telling him so others would not get hurt like I did.!!!

Needless to say, I’ve not been back to that Dr. and he was one of my favorites too !! From 1991 through about 2011, I guess?? I transferred all of my cardiac care over to my EPS/Autonomic Dysfunction/Pacemaker Dr or “Neuro-Cardiologist”. I decided that I wanted only one heart Dr to handle everything because of being on Blood thinners (Coumadin) and such..I liked the fact that my Neuro-Cardio office had a “Coumadin clinic” with nurses who actually called and reminded me to get my blood drawn. It made me feel more safe about taking an “unsafe” type of medication.

Well, Luvs….bye for now….this was the story of the “Cardiac Cath from Hell”…but I’m glad its over and I’m not sure when I’ll need another but my Cholesterol went from 204, when that heart doc freaked out on me to now its about 223 to 279 it has been!!! YIKES huh??? I do know that the Dr. who did the heart cath only got about 1/2 way done and finally stopped the test because I was crying and screaming so much. They did find 30% stenosis in my heart and they are saying that I do have “CAD”, but it’s not terrible yet or right now…we will see as time goes by.  I don’t eat too much bad stuff, but those Fentanyl transbuccal meds were sugar filled and bad for my teeth. Luckily for me, my dentist made me a special floride tray to use twice weekly and help with that so my teeth did not rot out!! Thank you God for that!!

Thank you for reading about my past experience in 2011, with the Cardiac Cath from Hell!! G’bye Luvs….Suzanne

   a picture of the Cath lab room!

    Here are a few pictures, to show you what I went through; though I was not drowsy in any way , shape or form…

my right RSD wrist after the cardiac cath….it hurts worse than it looks!
It hurts much more than it appears , believe me!!!!
a beautiful flower bouquet that I got from one of my very best friends…and she’s

like a “sister” to me !!

 some nice gifts I got when I was in so much pain afterwards