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Thursday, October 23, 2014

Life and Death Struggles


I’ve started out to write a few times lately, but just haven’t gotten a post finished.

 

Actually, I am doing a LITTLE better.  My eating has been under better control.  I was sitting here today wanting something different and my mind went to places it had been going to in the last few months and none of it sounded good.  I didn’t want to load my body with sweets or junk.

 

Actually, I am wanting sleep and rest today at lunchtime a lot more than I am wanting food.  I probably will go to our empty office and read and rest (and that means I will probably fall asleep).  My new medicine makes me pretty sleepy.  Some days are worse than others, but today I feel really sleepy.

 

We had some not-so-good news on Tuesday.  My daughter has been diagnosed with something called dystonia.  Dystonia is a movement disorder in which a person's muscles contract uncontrollably. The contraction causes the affected body part to twist involuntarily, resulting in repetitive movements or abnormal postures.”  It can affect only one body part or it can progress and become fairly debilitating.  Right now, it is affecting Stephanie’s right foot – causing it to turn inward.  We hope that is all it ever does and I will just leave it at that.  The doctor said you don’t want to go reading about it on the internet because the people who post about it are most often the ones have the most trouble.  If you are doing well, you are probably not on the internet talking about it.  She is on a drug right now that is also used to treat Parkinson’s.  The doctor said the drug is kind of a diagnostic tool.  If it works, you know you have one particular type of dystonia.  If it doesn’t, then it is probably a different type.  Ultimately, she will likely be treated through botox injections.  I have done some reading on it, just to try to educate myself, but I confess I don’t really understand it all and don’t know what to expect.  I will continue to pray for healing.

 

My initial feelings about this are kind of strange.  I don’t think it has fully hit me yet, and we really do not know how much it will affect her.  Each time Stephanie encounters a health issue, we are hopeful that it will be the last time.  This kind of takes away that hope.  Without healing, she likely will be dealing with this her whole life.  I am struggling enough just to take care of myself right now, so this makes me feel tired.  I need to get to feeling better so I can be there for my daughter in whatever way is needed.

 

Of course, there is worry that she will never have the life she wants.  She just wants to get married and have children – to live a normal life.  I am sure she wonders if that will ever happen.  I pray that it will.  My heart hurts for her.

 

Another (separate) issue she is having is that her liver is significantly enlarged.  She has “non-alcoholic fatty liver” which means her liver does not process fats in the way it should and it gets built up in her liver (or something like that).  It doesn’t really have an effect on her right now (although she says it does hurt, at times), but the doctor says she absolutely MUST lose weight.  She suggested the possibility of gastric bypass.  Stephanie reminded her of how she scars and another abdominal surgery is the last thing she wants to do.  After being reminded of that, her doctor agreed.  The doctor said, though, that if she does not lose weight, in ten years she could be looking at a liver transplant.  So it is very important that Stephanie begins losing weight.  We are starting to buckle down (I will do all I can to help her).  We also joined the YMCA last night.  We both would benefit from access to a pool, since that is the kind of exercise that is easiest on our bodies.  There are also other classes I might take – some yoga, pilates, water aerobics, etc.  I am limited in what I can do right now, but I need to get started.  Maybe doing it “for my daughter” will help my motivation.  It truly is a matter of life and death.  It is for me, too, ultimately.  Certainly a battle for my mobility and quality of life, but if I don’t start improving my health, it will become a battle for my life, too.

 

I’m going to leave it at that so I get this posted.  I would like to have a normal life, but it looks like that is not in my future anytime soon.  I never write off the possibility of divine healing, and I will continue to pray for that.  In the meantime, we have to do all we can do to improve our health.

Monday, October 6, 2014

A Fight for Life

I finally got my new med.  They had to order it and it only just came in.  Since they want you only using one pharmacy, I needed to wait for this one, since it is steps away from my loft.

I took my first one after work and then headed out to the grocery store (which I couldn't get myself to do this weekend -- too much pain).  I do think it helped more than my other med.  And usually if I can get the pain to settle down, I get on a better track.  I like that I can use this every 4 hours, if needed.   The other always wore off a little after 4 hours, but I could only take it every 6.

I started on a particular eating plan, which I will not talk about specifically until I get some days (weeks) under my belt.  I need to get off sugar, get a good start on weight loss, and get my motivation back on track.

After watching The Biggest Loser last week (or maybe it was the week before), it really got to me.  I need to be looking at this like I am fighting for my life.  I may not be quite there yet, but if I don't get going, I certainly will be.  I am definitely fighting for my mobility.  This is serious and I have been putting it off, like I have all the time in the world.  I don't.  I would also kind of like to have a more enjoyable life for the years I have left, than the way it has been the last  2-3 years.  I had begun to wonder if my head would ever quit hurting.  I could not make it stop.  Even when I slept.  I wasn't conscious that it was hurting, but as soon as I woke up, there it would be.  And sometimes I had difficulty going back to sleep.  Just think about one of your worst headaches (not a migraine, but a fairly bad tension headache).  Now imagine your head hurting like that pretty much all day, for weeks.  That's how it has been.  And I have to keep going, regardless.  I need a break.  I'm worn out all the time.

One thing I forgot to pick up at the store was a mouth guard.  I feel sure that will help.  My teeth are kind of sore and I know it is from clinching them at night.

That's it for today.  Fighting for my life -- that needs to be my focus.