Do you ever feel like just throwing your hands in the air and screaming ” YOU WIN!!!!” ? That is pretty much where I am at the moment.
I am so tired. Exhausted does not even begin to describe how tired I am. I need a break. When I say a break, I mean that across the damn board. A break from absolutely everything. A permanent vacation from the real world. A break in finances so I can have a break from the real world. A break in my health. You get the idea.
Somewhere around seven years ago, I started feeling bad. Little things. Things I really couldn’t explain, nor could I find good descriptives of how I felt. Finally, I just started telling my husband and my doctor that I have bad blood. That is exactly how it felt. I swear I could FEEL my blood trying its hardest to push through my body. Trying so hard it made everything hurt. My biggest complaint at the time was my left leg ached so bad I would just sit and cry. I felt like I needed it rubbed, so I would ask my husband to rub it and it took all I had to not come up swinging and shouting. It hurt to just touch it. This wasn’t all the time, it came and went in spells. I had all kinds of crazy tests ran. One they actually hooked me up to some machine and inserted needles that shocked my nerves. Talk about fun. And, of course nothing. I was out of my mind.
Life went on and I learned to just deal with whatever the day decided to bring.
September 23, 2012 I decided I didn’t want to smoke anymore. Quit cold turkey. That, is shear hell, but effective. That journey is a whole different story.
About six, maybe eight months later I had routine blood work. I got a call to come in and talk to my doctor. I figured she wanted to adjust my thyroid medicine. I go in, sit down and she tells me my platelet numbers are sky high. She said they had always been slightly elevated, but that is normal for a smoker. Now, that I am no longer a smoker she started going over my numbers over the last two years and the numbers have been going up and up, and have not gone down since I had quit smoking. She had no idea what was going on, so she sent me to a blood specialist. I was over the top scared to death, because of course, I had been googling all of this. Blood specialist said there was nothing wrong with my blood, no cancer, nothing that he could help me with. He said my problem is that my bone marrow makes too many platelets which is making everything else out of control. He sends me to another doctor who sends me to another doctor, and eventually I end up at a Rheumatologist. Well, he takes one look at all my tests results and tells me I have CREST Syndrome, which is a whole bunch of disorders wrapped up into one nice little package.
It falls under Auto Immune, rheumatic, chronic, esophageal, lung, and heart diseases. And, I am sure I probably left something out. I have bad days, very bad days, and occasionally good days. Life is REALLY great when I have more then one good day in the same week.
When I was first diagnosed we tried a few different medications to try and help with the raynauds and others to help with the pain and inflammation. I hated the side effects of all of them. I refuse to take any medications for any of these things, except the acid reflux. I do take an over the counter for that. There are some days when I swear the acid reflux is going crush me to death. It has been really bad lately. EVERYTHING has been really bad lately. But, I have to participate in the real world, so I have to force myself out of bed and into life.
Over the last six years I have been on a weight gain, weight loss roller coaster. I have tried absolutely everything. I start to lose some pounds and my body starts laughing at me., and sends me a week long present. INFLAMMATION! It is so miserable. I mean it makes it hard to bend my fingers or toes, it just makes me miserable. To make matters worse that is when the bad blood episodes hit. I cry alot. In the dark where no one sees me. My family does not understand. To them, I ALWAYS feel bad, So, I try as hard as I can not to complain, or let them know how bad I feel. Lately, I just can not stand being in my own skin.
I found out a few weeks ago, I have mono. YAY! Thank you God of health. My doctor told me to go home and go to bed for a month. HA!!! As if I could REALLY do that. If my insurance would pay for it, I would pack us all up and move to the beach, rest there until the day I die. But, that is never going to happen, and I HAVE to go to work. I have been so inflammed for about three weeks now. I can not begin to tell you how bad I feel. And because I like to add insult to injury, I have been trying so hard to lose weight. Damn scale is going to get a bullet in it REALLY soon!!
I have researched food and exercise and auto immune and everything else. There is SOOOO much information out there, sifting through it all is a nightmare in itself. There is a diet protocal for persons with an auto immune disorder. Yet, when you search for that it isn’t a universal diet or way of eating, every other doctor has a different idea on what you should eat and what you shouldn’t. I paid for a nutritionist for three months, did not help. So, I have come to the conclusion I am in this all by myself. I suppose it is going to be a process of trial and error, and elimination. Which, is probably going to take forever, but hopefully I will make progress. Progress would be, lose weight and feel better. The part that scares me is exercise. UGH. I know nothing about weights, and I am not hiring a trainer.
So, I suppose much like everything else, I am in this alone. If you have read all of this, and you have suggestions, or advice, please pass it to me, I am game to try just about anything at this point. If you don’t have any suggestions or answers, share this, maybe someone you know somewhere does! And, I will try to remember to document my progress or failure here!