AngelManFL Update

Status
Not open for further replies.
Capt Al,

I agree with you on tapered doses, after long term use of alot of pain meds you can have seizures if you just go off them cold turkey.
 
Don,without a doubt you are my hero!You have endured so much and yet you still find the time to show sincere compassion to others.Your spirit and willingness to fight in the face of such incredibles hurdles inspires me.I have to say that you have taught me so much about love and kindness.
I think and pray for all of you on the forum all the time.I have been coping with the loss of my husband ...like you say Don i take it one day at a time and i pray for a cure soon for all of you wonderfull people who are so brave!I miss you all a lot and i dont know where i would have been without the help and guidance and love from all of you who supported me during my husbands tragic illness........thankyou all so much and you will always be in my heart!..........Gina
 
Women and their way with Words.........

Gina, I appreciate your comments so much. As a man, a lot of times I do not see things that are right in front of me. I have never figured out if it is men are from Mars, Women are from Venus, right brain, left brain, or maybe, no brain?

I just love the way women see the heart of someone and have the tenderness and the compassion to reach right in and lift them up with their words. I wish I had that gift.

Thank you for your comments and to all the women out there who have helped us when we needed a womans insight into encouraging someone.

See I can not even put into words what I feel in my heart, which is thank you all for being here and helping us all make it through this mess. I do not know what I would do without you. :cry::cry:
 
Last edited:
MTpockets....dont look now but you do have that gift!Your words also brought me to tears and lifted me up as a woman.Man,women, left brain,right brain mars or venus we are all connected through our energy,love and compassion and our struggles as human beings on this earth!I am learning that even in the face of tragedy thier are always gifts!Thankyou for my gift this very moment in time!........Gina
 
I do not know what I would do without you.
Click to expand...

Nor would we know what to do without you, AL! :)
 
Thank you to everyone..

I just want to thank all of you for your support and love and prayers and concern... This is my first and only forum I have ever been a part of and feel so blessed and so grateful to have stumbled across such wonderful loving and caring people.. I thank God for all of you.. My doc and i are slowly reducing my meds together, slower thanI'd liek but he insist to do it slowly.. very tired so short today, just wanted to express my love for all of you - Gina you are right, there are times when I believe I actually feel your love, prayers energy touching my heart and it gives me the streength to keep on going, thank you to all of - your so kind and it brings to tears everytime I come back - but they are tears of joy from your compassion
God bless you all.
 
Don,

I justed wanted to check in with you and see how your appointment went with the Dr in Tampa.
I think you said you were supposed to go yesterday. Hope you are doing ok.....
 
Thank you Crystal,

It actually went very well - I honestly believe that they have finally found an answer for me - but I am trying not to get hopes up too high, but I just can't help it! It is called Ankylosing Spondylitis, he put me on a combination of two meds (prednisone 20mg twice a day and Celebrex 200mg twice a day). The combination is actually working and it has only been three days! The pain in my tailbone and lower spine is already feeling much better and the swelling is reducing too.. This probably the best I have felt in 18 months! I know that the body can't take predinsone for very long periods of time - but at least for the first since all this started I actually have real relief. So far my stomach is handling it ok.. It seems crazy that after over 30 Dr's or more and way too many pain pills that a simple combo could help so much! There is no cure for it either, but it is treatable and if we can aggressively treat it now they might be able slow down the progression. I won't know for three weeks due to the type of gene testing they have to do, but he examined my spine all the records from the Mayo and it seems like areal possibility.. we'll have to wait and see, I go back to the cancer center this coming week also.. I so regret going to the Mayo... My breathing issues might not be reversalble, due to ribs fusing to the spine - causes it to act like a cage - but I should always be able to breathe deeply through my diaphram - it will take a lot of exercise and training to get used to, but it will certainly be worth it.. I can't thank you enough for all your prayers and support - and hopefully I can stay grounded enough just in case it turns out in the end I don't have it.. but either way I know I have your love and support and for that I am eternally grateful. Thank you to all of you and God bless you.
 
Hi Don. I am glad you might have an answer! Ankylosing Spondylitis sounds like no walk in the park but at least it is treatable. Cordially, Cindy
 
Don,

You sound so much better, good luck at the cancer center this week......please keep us posted.
 
Don,

How did your appointment at the cancer center go?
 
Don, I'm glad you got somewhere with your appointment, maybe not the best news, but it sounds encouraging. ... About the prednisone... I was on this for over a year's time. Some options for you that can cut back on possible side effects, are to eventually take a dose every other day instead of every day. Also, it is important that you protect your stomach, so if they haven't put you on the over the counter prilosec, it would be best to ask if its ok for you to take this to counteract reflux etc. In my own experience with the prednisone, I was always on other meds with potentially bad side effects simultaneously, but all in all didn't have too many problems associated with it. Toward the end of my treatment I was on two different immunosuppressants and a very high dose of the pred - 60mg daily, and that did cause problems, I developed lesions on the retina of one of my eyes, but my eyes were fine for over 10 months on doses anywhere from 40 mg daily to 20 mg every other day. I believe that the current thinking on giving it every other as soon as possible has been found to be quite good at making it safe to take. good luck to you:smile:
 
New Beginning

What a diffference ten days can make.. they new med mix is actually working! I can stand up without crying and actually lay down in bed without crying! and we have already reduced my pain meds by 50%! The Cancer ctr wants a scan of my abdomen, an EGD and colonoscopy done. But today I went back to Tampa and found out that I do in fact have Ankylosing Spondylitis - definitively! He is switching me off of the Celebrex(killing my guts) and switching me to Sulfasalazine. He wanted me to start Humira immediately, but I really want to try and start with PT and a natural approach first. I read a book this week called the 'Patient Heal Thyself' - it centered on eating the way Bible states and basically has a homeopathic approach. The author is Jordan Rubin who also wrote the 'Maker's Diet'. My hope is that this will kickstart my digestive tract so that I might be able to eat real food again, it's been 10 months. My head is so much clearer w/o all those narcotics - I can't wait to get off of the rest of them. I owe my life to all of you.. 5 weeks ago I seriously considered taking my life, unable to bear another day of searing pain in my spine and no hope in sight. With your encouragement I kept my eyes on God and kept fighting for answers - actually I started demanding answers! That genetic marker I was telling you about they tested for turned out I actually have. I spent most of the day an emotional mess - but in a good way. It has no cure either, but it is treatable and he told me that there may be more wrong, they'll have to see how the scans and other test show up too, but at least I have something finally I can actually sink my teeth into and start fighting! It is very difficult to fight a ghost! one usually loses that fight! Seems odd to be so excited to have something incurable - but I am sure most of you understand - I now having something I can tackle and begin treatment. It will be a long hard road to get back on my feet and prayerfully my spine will oblige me without the use of more chemicals. I pray they will find whats wrong with my digestive tract too... It's from my tongue all the way down... But it is a new day and a new beginning, and have all of you to thank for it. Without your love and support and words of truth and encouragement I might not be here right now - and for that I will forever be in your debt. Al, Capt Al, Gina, Peg, Crystal, Irma, CindyM and to all of you have lifted me in your prayers and kept up my hope with your love and compassion - I sincerely thank you.
Goodnight and God bless you my friends...
 
You just made my night, Don. I am so happy for you. Congratulations to you. I'm sure you won't leave us and make sure you let us know how things are going.
Your fighting spirit will undoubtedly cause others to follow suit . . . and the good news you bring will give many others hope.
The best to you, Don. Please keep taking care.
 
Don,
I am so happy that you are getting answers, yes like Wright said it brings others hope.
Please keep us posted.....
 
Status
Not open for further replies.

Similar threads

A
Update for previous post … got a different diagnosis
Replies
3
Views
1K
Anxiouswife
A
S
  • Locked
Update: Went to the GP
Replies
1
Views
307
Nikki J
Nikki J
H
Update 34yoM
Replies
2
Views
444
Heesoos1089
H
S
Scared
Replies
13
Views
1K
Swede
S
L
EMG/EEG Update
Replies
3
Views
1K
MarineGuy
M
Back
Top