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Oh Don, i am so very glad to hear that you are posting again.My heart is just breaking for you.Please dont give up hope i just wish thier were some words of wisdom i had to offer you but i feel so totally inadequate.All I can do is tell you how much we all love you and are praying for a light at the end of the tunnel.I am so saddened by the lack of sensitivity by the people who are supposed to be helping you. You are such a courageous and caring man.You and your Dear Mother are in my prayers!.........Bless you my Angelman!...Gina
 
Nice to hear from you again, Gina. Hope things are going well...
 
hi don
i am so sorry for all your troubles, you definately been through the ringer.
nothing for nothing, try a different clinic, like univ. of miami, where they actually
do als research. you may find it to be a better experience.
i feel your pain, and pray for you. don't give up the fight!
dona
 
Thank you Dona, I am very much considering going somewhere else - just do not know where to go.. there is a Moffitt Center in Tampa, FL which is very near to me, but I do not know if they see cases like mine - I think they specialize in cancer - but I will try and look into it. I'm hoping my Doc will help me - ther are many test the Mayo never did - such as muscle tissue or bone marrow samples - so I am still not going to give up, or at least I should be honest and say I am trying my hardest not to.

Gina, there is not a day that goes by that I do not think of you and swmn.. I hope and pray that you are well and that your pain is easing and the healing in your heart is beginning. I have missed you terribly and pray for you often. Please forgive me for being absent for so long - I was just lost in a very bad place and still struggling daily to stay positive - I'm quite sure you understand, it is a moment by moment and hour by hour and day by day struggle. God will help get us all through these times of pain and anguish if we only we focus on Him and trust in Him. Easier said then done of course! It is so wonderful to hear from you again. God bless you my friend.

Goodnight all.
 
Hi Don! So nice to hear from you. I pray to God you will find a place where they will have the right doctors for your illness. We haven't given up at this end, still praying for you. God bless!

Irma
 
Hi AngelManFL,
With a name like that you have to make it. OK? Here is a small guar4ding angel to help comfort you this day. Remember,
Psalm 34:7, The angel of the LORD encampeth round about them that fear him, and delivereth them."
Angels.gif
 
Thank you Irma and Capt Al,

Today has been a rough one, was not able to get out of bed, missed work.. Hopefully tomorrow will bring more strength and less pain. This is actually the first day of work I have ever missed so far w/o an appt or test. I woke in just too much pain. Slept most of the day and tried stretching. Maybe it was your guardian angel Al just giving me comfort and rest...

Goodnight all and God Bless
 
Still Searching

Hi,

I'm sorry if I always sound negative, but it has been a very tough week. I just don't seem to have the drive or strength to keep up this fight when I constantly hit brick walls.. My Dr did refer me to new a doc(a Hematologist) at the Florida Cancer Institute, I met with him today and he seemed pretty determined to find an answer, it will take some time he said, he ordered all my records from everywhere and said that he will do his best to try and "fill in the blanks" where others may have just overlooked things or maybe missed something. So that is actually a good note for once. My Dr sent me to him to get tested for Amylodosis, a protein that can build up in all the wrong places if over produced in your bone marrow. There may be another item on the table called Ankylosing Spondylitis which is inflamation of your tailbone and all the tendons and ligaments up your spine. Which can cause the bones to sorta grow together and imobilize your spine. At least they are still searching and looking for answers which is a heck of a lot more than the Mayo did. Please pray for my mental state, I plead with you, it is so difficult to get up and go to work everyday, but I must in order to keep my insurance nevermind my job. I just am so weak, but I am at least still trying - it just a lot more difficult as the weeks go by.
God Bless
 
Don,

It's good to hear that you may have finally found the right doctor.
 
Don,
Bless your heart, my friend. I know what you are going through to a certain extent. I pray that God will grant wisdom to your new Doctor to leave no stone unturned and finally be able to help you.

I believe that I am a sum total of 61 years of trials and tribulations such as yours. Forty two years of marriage, 4 children, 15 grandchildren, and all else................

One day maybe you can look back on all this that you are going through and see where you have grown as a person.

I know when we are in the midst of storms, such as when Katrina hit us here in Gulfport, Mississippi, it seeks so bleak and like there is no hope or any way out. Even as we had 165 mph winds trying to destroy our house for over 6 hours, we knew we had to rely on God to deliver us, protect, us, and give us peace in the midst of the storm, and He did.

I pray you also will find peace.
 
Crossroad..

Thank you Crystal, I hope he is the right doc too.. I meet with another Dr over in Tampa next Thurs to check on the spondylosis thing too.. I just refuse to believe that I might have ALS and just keep praying and searching for something from someone or anyone who can find something that is cureable or at the very least treatable.. It is very difficult to keep up this fight as body continues to shrink and my muscles just keep atrophy - I prefer the word shrink - it helps me believe they will grow back.. my breathing more shallow - I thank God for my machine, but it still hard during the days at work..

Capt Al, tthank you for your prayers abd words of love and strngth. I truly do appreciate them - they help to keep me grounded in my faith and help me to keep on trying. Not doing so well lately. I feel like I'm at at true point in my life where this will define me forever.. It is my inside strength I am lacking recently, it is so hard just to type, nevermind speak and hold a conversation. I'm so very tired.. so hard to get out of bed now.. I am drinking weight gain shakes to stabilze loss.. not sure if helping.. must rest my fingers a while, thank you for your prayers, please pray for my docss too. Hopefully I can get through this low valley point and emerge out of current storm like you said.. prayfully better for it. God bless my friends..
 
Hi Don! Just read your post, sorry I am a little bit behind. I have been having some bad days still. Some days are good, and some are terrible. I get so depressed at times. In a matter of days it will be a year since my son passed, and it's been getting to me. I am so sorry to hear of the problems you are having, I will be praying for you, Don, take care of yourself. God bless.

Irma
 
don,

You said you wanted to get off of some of the pain meds, is anybody helping you do this?
all those meds have many side effects that can make you very tired , it might be contributed to your energy
problem.
 
Good eye, Caroline. I missed that clue, myself. Don- what she says! :-D
 
Pain Meds Withdrawal

Without my Doctors advice or input I removed myself from 3 of the 5 pain meds they had me on. There was a period of about 3 days that I went through withdrawal and had a very bad time trying to sleep.

A week later I saw my Doctor and he was very upset with me. He said I should have used a tapered dose to come off the medications I was on at the time as it was very dangerous to stop it all at once. He said there could have been some serious side effects and I basically had taken my life into my own hands.

I'm telling you this so you can get good advice from your Doctor before attempting stopping any of your medications. Please learn from my mistakes.
 
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