My Health is a Merry go Round

I was just told, not only do I have MS and Lupus, I also have Fibromyalgia! I couldn’t understand why my Percocet, Neurontin and Lyrica aren’t working. I can’t get rid of the pain! My body is fighting on so many fronts.. Is this what I have to suffer until I die? Incredible pain with no relief? My right arm and hand are useless. I am helpless to my health. I have no control of my body anymore.

I live in a rural area. I cant afford cable or internet. There is no busing. My Dr’s, pharmacy, groceries are all in a 5 mi area. I have no extra money for a cab. I’m too young for any help at the senior center. I can’t walk far even with a walker….So I’m housebound. I feel helpless. With my health, ability to get what I have to. I don’t feel the joy of life like I once did. Makes me sad. I want it back. I struggle everyday with just trying to function.

I don’t want to spin so out of control that I won’t be able to get some of it back. I was raised to get a grip and move on. But I can’t. These diseases won’t let me.

Rocovering

I’m still trying to recover from my injury. Living alone sucks sometimes. Lifting things too heavy is what did me in. Now 2 1/2 wks later I don’t cry all day.

I have been going through many emotions and physical issues. I found out today I can chalk another symptom on the terminally ill side. My OCD which I thought was another crazy part of my brain. Thank you Pamela for all your undiluted blogs of your life!

I feel like I’m on a raft floating and spinning around waiting to see what is normal to my illnesses. Every day it’s something new. I find out from people who are going through it and can write a blog, I call diarys. I wish there books with unrated, real person experiences. My neurologist’s idea of care is finding my MS and sending me out to the world. No wonder I feel set a drift.

Depression is the WORST one for me. As I sat down today, it dawned on me, what if most of the suicides are caused from undiagnosed illnesses? I know everyday is touch and go for me. Your body is attacking you. You don’t know why and there’s no one to understand and help you! I know MS is a daily struggle to deal with, not knowing what else is attacking is a nightmare.

I don’t ask for pity or I’m sorry’s. I WANT UNDERSTANDING! I want an aggressive approach finding out what the hell is in me! Symptoms associated with it and treatment! I ALWAYS had faith in the medical field. Now I’m seeing the canyon through it and people on top of each other in it! Like looking down into HELL! I swear if I could I’d go back in time to when Dr’s had a mission to care for and help people. I don’t understand. I did nothing in my life so bad to be punished like this.

That’s when give up mode turns on. Like now.. I’ve been a strong, caring, loving person all my life. All I ever asked God for was, please give me peace and happiness and real true love.  Not an easy life or money. I helped anyone any way I could when asked of or not. I raised 2 children alone the best I could through my body trying to kill me.

Is it any wonder why I’m just tired and want to give up? I’ve put everyone first, ex husband, children, elders, family before me. It’s sad to say I’m always in last for them. I have no one. No Dr’s, family, friends. I’m like a used toy now. I feel like I’ve been tossed away. Defective and no one knows what to do with me.

I didn’t ask for any of this. I’m sorry I’m not capable of doing any of the things I used to. I’m not that strong caring person anymore. IT’S NOT MY FAULT!!!  I wish with every cell in my body I could overcome this and be the person I was!

Remember, this is my diary! Any decisions I make are my right. I’m the one in turmoil. If I choose to give up I will. I won’t feel guilty. I’ve felt that plenty and I won’t on my way out.

No today isn’t that day.

Peace

My new life with Multiple Sclerosis

Just over a year ago I was diagnosed with MS. I’m 52yrs. It has been a horrifying year. I don’t have any kind of support. I mean close by and able to help me. I struggle to shovel snow, move heavy stuff and the reply I receive when found out, “You know your not suppose to do that.” Well I live alone and refuse to live in a pig say. And I know you’re thinking, lives alone so why does she pig sty, I have pets. I’ve asked my daughter to take my Susie Q. She’s my best friend. I will never have another dog as non can compare. Then I have the cats. When my kids get settled they will take 2. That will leave me with my 2 new  rescues.

Dr Young

  • Seeing Dr Young today. She will hopefully be my new neurologist. I’ve talked to her at a teva breakfast meeting and she clued me in on what supplements I shouldn’t be taking. Imagine that. My own neurologist I’d seen for 6 mo couldn’t even do that! I’d given her a computer typed list every appt. I’d been seeing her at that point at least once a week! She told me nothing about Multiple Sclerosis. I learned what I know now by groups on the internet, a book I was given by the regional teva rep: For the Newly Diagnosed, and teva meetings listening to local Dr’s and talking with people that were there. I was so incredibly stressed. I sat at my kitchen table Jan 25, 2015, a day before I was to start my first injection, for over an hour I was deciding on ending my life. I finally got it down to, you have only 2 things in life you have control over: 1, the length of my hair. 2, being here at all. So then I sat, crying through it all, finding a reason to stay. My baby. My Lilly Love. My only grandchild she’s 21 mo old now. She is my very soul. And crying harder at my thought of killing myself and being too weak to live the best life I’d be able. I got up and went to the bathroom and proceeded to cut off all my long hair. I don’t mean a trim, I mean almost a buzz cut! All with scissors! Then I put my picture on facebook. Lol…I have to really laugh. My sister called me, in California, she said my hair looked great! I said ” Not bad for cutting it myself”. She was speechless then said “You went to a salon right?”, said “Nope. My bathroom”. She couldn’t believe I’d done it myself! I can’t believe it either. I was cutting for at least 2 hrs. That was a year ago and today I wouldn’t have the strength.

  • It’s been a rough year. So many things I’ve gotten through. I don’t know how though. Physically, a big one, mentally and very emotionally. I’VE just started learning to not say I’m fine because I’m not. I can’t do everything like I used to. I raised my two children alone for over 20 yrs. I live alone now and this winter, although mild in comparison, made me realize how much I’ve lost in a year and how much my MS has progressed. Thinking back I don’t know how I did any of it. I was the sole provider. I would work through illness and I now know the worst MS symptoms, until I passed out and had to be taken to the ER. I can no longer multi task, walk without a walker, so many things have changed in me. The pain. I refer to MS as Isis. When I wake up I don’t know when or where it will attack me. My legs, arms, internally, mentally, or the steel band trying to crush me. It’s an ugly, vicious disease. I can only think, you where given this for a reason, so learn as much as you can and maybe it will help someone else. I believe in these things, live well,  laugh often,  love much, and for living in peace. I don’t do drama or fight and argue simply because I say I’m too lazy and I don’t have the energy.

Peace