Well as you can see, its been a while since I have updated, and its been a difficult time for me.
I have been having some issues on dealing with all of this. I thought I had learned to deal with it, but it really is difficult and sometimes you fall back on the progress you think you have made mentally. My pain issues have also gotten worse, so I have not been online much lately at all. Also this getting hot thing is about to kill me, at least it feels that way. It seems I am overheated constantly, and I looked up heat intolerance and found it can definitely be caused by nerve damage, which I do believe that is exactly what is happening. My doctors have also confirmed this to me. Unfortunately because of the nerve damage, my body has a very hard time regulating the proper temperature so I am constantly hot and cold.
I have also ended up with a new problem which is vitamin D deficiency. Amazing that when I look it up online, the first thing I find is all of these clinical trials of people with spinal nerve damage and vit D deficiency. So I guess again its another added bonus. I have been having to take 50,000 units of vit D, which is over 50 times the normal dose you would take as a supplement. It has also limited my time outside, as you cannot go out in direct sunlight while taking this high a dose, due to the fact that the sun is where you get vit D from. Before I was at least able to go out and at least try and enjoy small walks outside, but now that is even being limited. I finished the vit D treatment which lasted 5 weeks, and right after that I ended up with another infection, which again limited my exposure to the sun due to the antibiotic I was on, which thankfully I finally just finished. So hopefully I will at least be able to go for short walks now.
It has been nice living closer to my daughter and grand babies, all though it does really tire me out, and brings my pain level higher, I have had to add Lido-cane patches as well as a gel called Voltaren for the added pain I have been in., The reason I am using this method to add to the many meds, is I did not want to take more pain medication as in pills. I hate the feeling of all the medications I have to take, and the side effects really also take my joy of life away as I feel like such crap all the time from them. I wish I did not have to take them, but I have tried to cut back on them, and the pain is just to unbearable to do that. It seems that no matter what I try, there is always something new that pops up, that makes life worse. Its like one bad surprise after another and its getting really frustrating. I can only imagine the effect it is having on those around me.
Also the bladder spasms that cause shocking pain are getting worse and worse where I have to take a med called vesicare to control them, also it makes the hole of the suprapubic catheter that is through my pelvis very sore and painful as well. So guess what? You got it, more pain medication.
Sometimes I get so sad and angry at the life I have to live now, after that doctor ruined my life. I thought I had those feelings under control, but its just hard sometimes to not let it in. It would be different if I had been told the truth of the test results and what the risks of the surgery were, but I was not. I feel like I was deceived, in fact I know I was deceived, and that is why its so hard to control those feelings. I was going through my records again the other day, and could not believe that he lied to me so much about all the findings. It really makes me angry. I pray all the time for God to help me deal with my feelings, and to help heal me inside my body and mind, but I am how I am now and it is not going to change. Maybe one day I will learn to live with it mentally, but I know physically it will never be the same as it was before surgery. In fact it just seems to get worse. My feet are another issue, and they also seem to be getting worse.
My friend from one of my support groups came to visit from Australia for a day, and he has to walk with a walking crutch, I wonder if because of the way my feet are becoming if one day I will end up where he is now. I hope not. I want to see my grand babies grow up, I want to be part of their lives, and not just looking from the outside. I want to participate with them, play with them, do all the things I used to do, but I cant, and its frustrating me very much.
I have been taking time away from the computer because of so many things I am dealing with mentally and physically and it just never seems to get better. I think this is the longest I have gone without updating since I started the blog, but its hard. I find myself closing in on myself, and shutting life out because I cannot participate in life how I should be able to at my age, and its very difficult to know this.
Here is a song that really fits how I feel so often
I feel like I am running, trying to not give into the feelings I get, the ones that make me want to give up and feel so lost, but I just keep running from it, hoping that one day it does not catch up to me.
Here are the lyrics to the song: Running
I'm not ready to paint my face
And cover all that lies beneathe
If that disappoints you I'm sorry to say
I will be no accomplice to a theif.
Just like this river that flows in between
Or the rocks and the brambles in the way
You can build a dam, you can force it upstream
But the water, always gets away.
(Chorus)
I been runnin' from, I'm runnin' from
The fear I'll lose myself in what I've become
And I don't wanna be under the gun
Please give me the strength to find I don't have to run.
My mama told me, child, she said
You're beautiful you're beautiful to me
[ From: http://www.metrolyrics.com/running-lyrics-sonya-kitchell.html ]
I said mama, wish I was in your head
Cuz despite your words I really do not see.
(Chorus X 2)
I been runnin' from, I'm runnin' from
The fear I'll lose myself in what I've become
And I don't wanna be under the gun
Please give me the strength to find I don't have to run.
I been runnin' from, I'm runnin' from
The fear I'll lose myself in what I've become
And I don't wanna be under the gun
Please give me the strength to find I'm not the only one
Please give me the strength to fine I don't have to run
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