We began the process this weekend. I should not say we because it has been so hot I haven't been able to do much. I am still having the problem with my skin feeling on fire, but that will get better, but probably never go away. because of this we have been going to bed earlier and the new medicine allows me to wake up earlier so I can enjoy a little bit of the day before the heat sets in.
We got the brick and mortar picked up so we can brick the outside of the finished part of the basement and seal it, that is where most of the water came in, so we will be able to start the brick next week. I want to thank everyone who donated to our cause it has been appreciated. This has been a rough spring and summer to say the least.
My daughter is still Dizzy she hasn't been able to get out of bed for almost three weeks now. She goes to the eye doctor today, so hopefully we can get some answers.
My wife has been doing everything around the house because I cannot without overheating, and then having a storm so she is starting to get migraines again, and the pain from her spodylitis is worse than it has been. financial struggles come along with the medical bills so that is a stresser for me and my wife with so many doctors and doctor visits we have cut just about everything that we can so we can afford to get the medical care that we need.
The new medicines that I am on are tier three medicines with our insurance company so they are quite expensive, our medical insurance is almost half of what i get on SSDI and then we have all of the prescriptions on top of that so it can get pretty expensive. It gets more difficult to make a budget because we never know how many trips I am going to make to the doctor in any given month, or if I am going to be put on any new medicine or not. That is definitely one of the things this disease is, unpredictable. I never know from day to day what it will be like what new challenges lie in wait for our family.
We do not know what to do we are just learning,coping,struggling as we go, and as a Father and husband who cannot work to provide some of things that I would like to is tough. Not being able to help my wife as much as I can. or helping fix up the basement because of what Dystonia has done there are times that I feel useless, and helpless. My wife would like me to do more I just can't. I have tried and if I push myself it causes more Dystonic storms that she has to deal with, and that makes it tougher on the both of us.
I was able to go to church yesterday morning which was a blessing, but by afternoon it was too hot for me to do much of anything so I stayed put most of the afternoon. This week is going to be hot so I suspect more of the same.
My cousin Amy called on my birthday so I got to talk to her which was awesome and I got to FaceTime with my grandchildren in Washington so everything hasn't been all bad.
I do wish somehow this sense of being a burden to my family would go away, but I am afraid that will always be there. My mind is drifting in and out this morning, that is how I explain it so I hope these thoughts have been coherent. I have been having more of the memory gaps lately than normal as well.
On Saturday we were in the basement looking at the electrical with the friend that is helping us with the Brick, and we were talking about how and what needed to be done, and that is the last thing I remember. The next thing I remember was waking up in the recliner and no one was inside. I called my wife and she had to tell me that I had a Storm and the friends finished cutting the rest of the sheet rock, and preping to be able to brick, and they had already left. Very frustrating, but it is what happens and is happening more frequently I guess that is the progression of the disease, but I know it is difficult on my family.
So please keeps us in your thoughts and prayers as we continue to struggle to cope with everything that is going on in our lives. This Disease has taken many things from us , but we are trying to get through it as a family. We are hoping to get back in the basement within a month, but as we know plans change I never know what is going to happen from moment to moment. God Bless
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