Scars

Tonight I am thinking about scars. I have them all over my body. I have stretch marks from a huge round of prednisone back in 2001, not to mention two pregnancies. On prednisone (60mg/daily) I gained 75 pounds in one week's time - leaving stretch marks in all major areas, arms, legs, tummy; the back of my knees are even marked!

I have what looks like a small knife wound scar on my neck and a bullet hole in my upper chest. These are from when I had a split ash catheter put in for dialysis. The slit in my throat helped to install the catheter and the hole in my chest is where it came out. I have often tried to think of a good story of action and adventure to explain these scars in a more interesting way.

Over the years, I have aquired various bite scars on my hands from the many animal bites I have endured from rats, rabbits and cats. When you do recsue of feral cats and kittens, you get marked for life!

In 2005, I was awarded a large scar across my abdomen from my kidney transplant. It goes well with the several smaller scars on my belly from when they removed my Gall Bladder in 1998.

Among a few other childhood scars, I have a noticable scar on my left knee from an bike injury as a teenager. Nothing too interesting, just a crash to the tar for no really good reason. At least my bloody hands healed up nicely!

My most noticable, most memorable and the biggest scar, so far, is my left ear. I am missing the top part of my left ear and all the hair for a few inches around the ear from a car accident when I was four years old. My head hit the tar when I fell out of the car my Mom was driving. I was trapped under the car with my hair pin beneath a tire. I was lucky, no brain injury or facial scars. Today, my hair mostly covers the area.

Now I will have a new scar to fret about.

On Friday, February 12, I will be going under the knife once more. I am having a complete Parathyroidectomy. They slit my neck open and rip all four parathyroid glands out, replacing a small piece of one under the skin in my arm. It will then work from there. Hopfully without going crazy like they are now. The procedure is fairly common among dialysis patients, but the thought of my neck being slit across the middle is less than comforting. I am told I will be left eith a 3-4 inch scar across my neck. The scar should lie in the crease in my neck, hopfully not too obvious.

Christmas In The Hospital!

This past Christmas I spent a week in the hospital. After about 17 surgeries and probably almost two years of my life cooped up in hospital rooms, doctors’ offices and in for tests, this was the first time I actually spent Christmas in the hospital.
I went into the Emergency Room on the 22nd of December (a Tuesday), but I had stared getting sick the Thursday night before that. I just figured it was one of my normal sicks that landed me in bed for a week. It happens for no apparent reason and is just part of life.
I was listless, couldn’t eat at all, wanted to drink but could only stomach water. All I did was lay in bed with my puppy glued to my side. He virtually refused to leave me for any reason unless forced.
Actually that Monday night I thought I was getting better. I got up, took a shower and did my normal work from home thing (more on actual work later) and ate a couple bites of food. I didn’t feel at all decent, but I got through work and immediately went back to bed. I kept trying not to throw up that night. I kept forcing it back, trying to make believe I was doing better.
The middle of the night I violently threw up and knew something was seriously wrong. I told my boyfriend I needed to go to the E.R. He was freaked out about my health and logistics. I told him it was 4AM. He should go back to sleep, get up with the alarm, get his kids (3 of them) off to school, then take me in. I wasn’t going to get much worse in three hours and didn’t think we needed his mother to get up and drive a half hour just so I could get to the E.R. an hour earlier than I would anyway. So I laid there and wallowed in self pity for a couple hours.
I knew it was my Crohn’s Disease, but I really had no clue what was wrong.
After much poking and prodding, blood work, x-rays, etc, it all came down to what looked like a partial blockage and I needed to be admitted for observations, fluids and pain management. Oh the pain was horrid!
The next day we finally got the contrast into me for a CAT Scan, but then they dumped more contrast into me via IV, because all the stuff I drank didn’t work! Why they didn’t just dump it into me by IV in the first place is beyond me.
So lots of pain and drifting in and out of reality. Normally I read a lot, I was too sick to even do that. I also spent very little time on my laptop as it was too heavy to move by myself most of the time! I knew I was really sick when the chicken broth wasn’t the most disgusting thing on the planet.
Normally most of my pain is in the lower right corner of my abdomen. It’s been there for the better part of thirty years and I have experience little else. But this wasn’t just in the lower right quarter of my abdomen, this was also searing pain right up in the middle, just below where your stomach sits. This was extremely scary and more than unnerving as the same pain has been back and bothering me for the past two hours (but I’m not going to freak out yet).
So I was admitted into Central Maine Medical Center. For some reason they put me on M1, the cancer ward. If I ever have to go back into CMMC I’m going to request M1! I have never encountered such fabulous nurses in my life!
As I said, I have spent a lot of time in hospitals and dealing with medical staff, these were the best nurses and CNAs I’ve ever dealt with. They were more than on top of everything, enjoyable, forthcoming and kind. Anything I wanted or needed, right down to a smile was given without a grudge. Some hospital staff I’ve dealt with made you feel like you were completely putting them out if you were writhing in pain and asked for something to help relieve it. This group was nothing like that. This is the first time that I did not encounter anybody who wasn’t pleasant and there for the patients. I seemed to encounter no bad moods or attitudes on M1! A first in my life.
So I had a partial bowel blockage, a first for me. Normally my CD just festers away making my life a living heck, but not really doing anything too detrimental until I actually need surgery. This time my CD was right there causing some serious trouble and I still hadn’t found a gastroenterologist that I liked (a whole other story I’ll get to later). Well, in CMMC not only did I find fabulous nurses, I found a GI (gastroenterologist) who I adored.
Within five minutes of meeting Dr. Stuart Eisenberg (from here on out known as Dr. Stewie) I decided that I needed him to be my GI. Not only was he kind and thorough in his examination of me, he asked all the right questions, put me at easy and set up a game plan. My boyfriend wasn’t sure of Dr. Stewie as I was right off the bat, but he also has not gone though as many doctors and specialists as I have over the years. Stacy now completely agrees with me and is as blown away as I am.
So while I spent from December 22nd to the 27th in the hospital, it was not the worst thing in the world. There was much pain and fear, but something wonderful came from it, I now have a GI I actually trust.

All in all, a good day!

Today was pretty good day! I define a good day as any day I am not in bed for most it and I am not in excruciating pain. Yesterday, I went shopping with Kendra for a few hours and my feet hurt so bad I could not walk by the time I got home. That was not a great day.
Today, however, I was up and out by 10 AM to get my daughter to school for her drama class. I read my book as I waited for her; I felt comfortable and relaxed, not too tired. At around 11:15 we met a friend and had Chinese for lunch. I ate too much, but did not have digestive reprocutions! We all sat in the restaurant, visiting and laughing until almost 2 o’clock! It was wonderful.
This evening, my daughter had her last basketball game of the season. My frends and family came out to watch, it was nice. I was in some pain during the game, especially after sitting on those bleachers through the JV game. Thankfully, the pain was tolerable; I would say a 3 or 4 on the pain scale. My daughter’s team won, a great way to end the season. I was extremely sore getting off the bleachers, but I did it. I then went home and rested as I waited for my husband to cook supper. My back ached and my feet and hip hurt, but I had a full day.
Now I look towards tomorrow. My daughter has drama once again at 10:15, I have to find food for the two of us and my Christmas tree still needs to come down. The ornaments are finally off, but now the tree must go. Maybe tomorrow will be a good enough day to finish the task! Wow, imagine having the energy to take down the whole tree in the same day!

Chasing The World!

Oy, the ‘Gee, you Don’t look sick…’ comment really hurts! Earlier today I had to sit down on the sofa and just stare at my dogs as they chased each other around the house. There was nothing I could do about it as I couldn’t stand for the pain in my gut.

See, I have Crohn’s Disease. Actually, I have CD, arthritis due to the CD, ovarian cysts and a whole myriad of other issues, most of which are caused by my CD.

So I just sat there and watched my big dog heard my puppy into corners while he stared up at the loud barking dog over him. Finally I was able to catch my breath and then catch the puppy to return him to the gated area where we could curl up on the sofa together.

He’s actually a really well behaved little dog, except when he’s running wild with the big dog. Actually in training to be my service dog. At first I just didn’t dare leave him alone, so he went everywhere with me. But then one day, not long after getting out of the hospital for a partial bowel obstruction, I was at Target with him. He started to get extremely agitated the longer we were in the store. Suddenly I realized that my pain levels were building and I hadn’t realized it. I was not yet in fall down pain, but if he had not alerted me to it, I would have been at that point and in too much pain to drive home. Since then I rarely leave home without him.

I’m sure people who are not sick do not understand how I was in extreme pain but did not realize it. But when you deal with excruciating pain on a daily basis, it some times becomes old hat. I have been on the sofa clenching my jaw and fists in pain and not even realized it until my boyfriend asked if we needed to go to the hospital. I live on constant pain killers and in constant pain. Hospitals and doctors ask people to rate their pain on a scale from one to ten. One being no pain at all, ten being the worst pain you’ve ever felt. I don’t remember a moment in the past year that I have not been below a three. Some times I can reach an eight and not even notice I’m in pain until I physically cannot move and breathing is a near impossibility. I will end up on the sofa or floor curled up in pain with tears streaming and the last thing I need is for that to happen when I am twenty minutes from home shopping and by myself. So while many people do not think the poofy little maltipoo that’s riding around in the baby seat of the cart I’m pushing, he’s already saved me a trip to the hospital on one occasion.

So while I might not look sick, most days are a struggle in one way or another.

Gee, You Don't Look Sick...

Gee, you don’t look sick… I hear it a lot. What does sick look like anyway? I am supposed to be underweight, and pale? I am not. Am I supposed to have thinning hair and leathery skin? I don’t. I look like your average soccer mom. I have thick long hair a fair complexion and I need to lose about 50 pounds. No, I guess I don’t LOOK sick, but I am.

I have fibromyalgia, diagnosed in 1991, and End Stage Renal Disease, diagnosed in 2001. I went on hemo-dialysis at that time. I had a kidney transplant in 2005 and it failed in 2008. I returned to hemo-dialysis, this time nocturnal schedule. I have unstable blood pressure, vertigo and asthma. Because of my fibromyalgia, I walk with a limp and experience extreme pain in many of my joints on an inconsistent basis; I have a sleep disorder, irritable bowel syndrome, frequent headaches, TMJ, and deep nerve pain, especially during dialysis. Standing, sitting or any position hurts if held for any length of time. If I stand more than a few minutes, I get very dizzy as my blood pressure drops very low. Sitting hurts my back and hips; walking hurts my knees, back and hips. I spend many of my days in bed, because of pain and extreme fatigue.
I am sure that others probably think I am lazy, milking my condition, but they have not had to walk a mile in my shoes. A friend shared an article with me once, where a woman used spoons to explain her condition to her friend. It became known as the spoon theory. I believe it is a wonderful explanation. The Spoon Theory

Ken and I started this blog to share our experiences as professional patients. We want to share our frustrations, our laughable moments and our hardships. We welcome others to share their stories as well.