ANOTHER FRIDAY – THE SUN IS SHINING AND I PLAN TO HAVE A GREAT DAY..

     I woke up feeling better than I did yesterday.  My Aid came at 10 AM and took my blood pressure… it was fine.  Then my 25 pills and some apple juice to wash them down.  Then I shaved and prepared myself for a shower.  I set on a shower stool and my Aid comes in the room and washes my hair because I cannot us my left arm over my head.  She then hands me a washcloth and I was my face.  Then I hand it back to her and she puts on some bath soap and washes my back. 

Then she moves to the other side of the bathroom.  I finish washing the rest of my body.  Then I stand and rinse off, being careful to get all the soap off my body.  Then I reach out and get my bath towel and dry the upper part of my body.  Then I wrap the towel around my middle and leave the shower and set on the commode.   The Aid then dry’s my hair with a hand towel, in winter she also uses a dryer.  She then leaves the room and makes my bed while waiting for me.  I finish drying and put on a pair of shorts and go set on my bed. 

While I am setting there she applies a medicine to the sores on my arms, sides, and legs.  They are getting better but it has taken a long time.   The sores are from a bacteria that lives in our noses.  This one also attacked my body, because of my wonderful immune system.  If I am going out she helps me dress otherwise we set and talk till her time to leave a 11 AM.  On Thursdays she takes out all the trash in the house and places the garbage bins to the street, about 10 feet.  Then on Saturday at 11AM one of the Aids come in and does cleaning.  The clean the bathrooms and steam clean the floors.  Then they sweep the main part of the house and also steam clean it also.  After that they do whatever my wife has for them till they use up their two hours.  It is great to have someone there to help me every weekday morning.  On the weekends my wife makes sure I take my meds then lets me sleep till I wake up. 

Our church does not meet until 4PM on Sunday because we share a pastor with another church.  As they find a replacement at the other church then we will have the Pastor full time.  I wrote out my routine so you could see what has been happing for the last six years of my life.

BACK AGAIN

     Well will I never learn... Yesterday I felt better than I did for a while.  So we went shopping and to lunch.  Then I helped unload the truck.  Stupid stupid... I spent most of the day in bed today.  I got up around 6pm to have dinner with my wife.  Will I ever learn to not over do on my better days???  I am still in major pain but help it will be less by tomorrow.
  
     Chip my service dog, spent the day at my hip.  He is so conforting and knows when I am not feeling good.  As I set here typing he is laying at my feet.  He turned 11 this summer and I am praying that he will be with me for many more years to come.  My first service dog Chance had a broken hip as a puppy and in his 12th year I was forced to put him down when meds would no longer work to keep him confortable.  I was so lucky that he had taught Chip how to care for me.  The day Chance died, Chip took over and became my service dog...  It made the loss of Chance easier but I still miss him. 

     Well we will see you gaing tomorrow....

Today I hurt worse than yesterday! Who said FM patients arn't affected by the Weather?

Well today I didn't get up till 2:00 PM.  The pain kept me in bed after last nights storm.  We had rain and lighting all night long.  We don't have these kind of storms very many times in the year because we only normally have seven inches of rain per year here in the desert.  I was planning on doing some things today but that was before the rain storm.  I have a list of things I need to do, in the new Windows 7 program there is a feature called sticky notes.  It works just like the sheets of paper we have used except they are sheets on the screen that we can fill out.  I have a list of things that need to be accomplished, but I have to be careful what I do so I don't overwork just before the weekend or another scheduled outing.  I have to rest two days before I go anywhere so I will feel like going.  That doesn't leave many days that I can do things. 

I am still really excited about going to FFC in the new year.  I am so looking forward to being more like I was.  I know they don't have a cure and may not find a cure in my lifetime, but if there is something that can be learned through my experiences then it's worth it.  I DO NOT want my sons to go through all the pain I have in the last 15 years of my life.  My oldest son is 32 and this crud hit me when I was 38 and I had to quit working... I don't want that for my sons.

We are planning a trip to Las Vegas on Thursday if I am up to it.  We need to make or monthly trip to the Air Force Base to purchase our bulk food stuffs for the month.  Even though it's a 120 mile trip the savings are worth it.  We purchase things like meat at a great discount to what we have to pay in the local stores.  We also don't pay any sales tax on base so that saves.  They have a regular mall with food court, a large department store and lots of little stores down the mall.  Then there is the commissary that has the food stuffs.  It's a nice diversion and we save money.  We can also stay on base at the visitors quarters for about half the price of a hotel.  We may use this when we have to go down to FFC.

Well take care for now.. and God Bless you
Jerry

Today it rained.... sob

I woke up yesterday knowing that the weather was going to change.  My body hurt and I spent the day in bed.  Today (Monday 10/02/10) I feel about the same.  I did get up for a bit because I had to return some phone calls.  I was scheduled to go see my dermatologist on Wednesday, but I rescheduled that trip.  For me to see my VA doctors I have to travel 300 miles one way.  They do pay for my travel, but that kind of travel is hard on my system.  Especially when it's wet weather outside. 
I live in Southern Utah by choice.  We moved here almost 13 years ago for my health.  The climate here is almost perfect for me.  We get about 7" of rain a year so that is nice.  The sun shines 360 days a year, and that really helps me from depression.  We live in the desert so in the summer it gets hot here.  We have about two months of 100+ degrees weather.  I just stay inside and my air conditioning make a nice climate for me.  If I have to go out then it's in our truck which is air conditioned also.  Our winters are mild, we have 50's and 60 degree weather during the day time in the winter.  You may not know that the desert cools down about 30 degrees after the sun goes down.  If you have lots of concrete then it will hold the heat.
My days run like this.  I am in bed usually awake when my Aid comes in at 10am.  She helps me with any thing like taking my blood pressure.  Then most days I take a shower and she assist by washing my hair, and then my back.  I continue the shower by myself after that.  She has to stay in the room because, I have a habit of falling.  After completing my shower I get my towel and dry myself off.  Because I can't reach higher than my shoulder with my left arm she will dry my hair with another towel.  Then she leaves the room so I can finish drying my legs and get partially dressed. 
I am fighting a virus called folliculicis when has taken over my arms and legs.  We not have medication that my Aide puts on for me.  She does my arms and legs and we are finally seeing some improvement.  If you have this (crud) as I call it you understand.  I had a yeast infection in my gut and it took 6 years and lots of dollars to defeat it.
One of the counselors from FFC called me this morning just to see how I am doing.  I am signed up on their web page and that is how she found me.  She has called me several times in the last few months.  Today I was so glad to schedule my first appointment....   I am so looking forward to having a life.
I am doing this blog so you can see my progress... I hope it will encourage you to get to one and get better.  I have been in touch with others going through the program and they are very excited.  This does cost.  We decided to give up our home to be able to afford for me to go to FFC.  We will be here for about another year then we will rent for a while.   Our goal is to build a custom home for us with my needs in mind.  We have had a design in our minds for many years now and I am in the process of sketching it so I can take it to an Architect to have it properly designed.  We have several things that we want special.  Like a walk in shower like we have now.    Talk to you tomorrow.

Another day another Dollar......"wait I didn't work today""

I really miss working, it has been since January 1996 that I have worked.  I am still fighting a sinus infection.  This gives me headaches which is best when I sleep.  I wish I could get up at 8 A.M. to be to work at 9 A.M..  My aid come in at 10 A.M. each morning M-F to help me get up, take my pills, get showered and dressed for the day.  If I am having a bad day, they bring me a washcloth so I can wash off then stay in bed.  Today I slept till two pm, what a bum. 

I am still a bit down, although my mortgage company has promised to look into a new mortgage for us.  This will free up about 700.00 in cash each month.  That would allow me to go to Fibro and Fitigue Center and get some treatment for this "CRUD". 

Just existing is not living.... and when you feel so bad it's hard to get up and get out and do things for others.