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Is this just my new normal?

Stunted
Posts: 1
Joined: May 2013

I was diagnosed with ALL (PH+, CNS) almost two years ago now, and that was after 24 years dealing with a chronic autoimmune disorder.  Treatment was a real whirlwind: heavyinduction chemo that nearly killed me, a relatively bearable maintenance round and a rough BMT prep of chemo and TBI+cranial irradiation ... all within 6 months.

In every medical and measurable way, I am now better; the cancer and previous autoimmune disorder are gone.  But I certainly don't feel it.

Since sometime shortly after transplant, I've been having chronic headaches.  It was better when I could treat them, but my neurologist advised abstaining from pain medication, not that anything as weak as Tylenol actually works anyway.

My fatigue has been getting the best of me for a while now, I'm barely able to work half-days before I hit a total wall.  I get so tired that my eyes start wattering and, yet, it's often difficult to fall asleep.  I'm still waiting to get a call or a letter informing me of an appointment for a sleep study.

I feel like a complete dunce anytime I'm in a conversation because words just don't come to me like they used to.

I pretty much have no life anymore.  I have a supportive family, but it's very difficult for me to put myself into any social situation as spending my childhood in the hospital and constantly on immunosuppressants (I'm sure many of us are familiar with Prednisone and the phsychological train-wreck it can turn someone into) have made it very difficult for me to connect to people.

Does it ever end?

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Sorry but with the acronyms not sure what type of cancer you have, but do know it's not mine uterine.  Sounds like you've had your share of rough treatments which have helped, but oh the side affects and many are long term.  I endured chemo - 6 harsh rounds and 33 sessions of external pelvic radiation in '09.  Today no evidence of disease but can say I do have side affects, but nothing with tons of pain, etc.  

I will not get into specifics about your issues, but would always recommend another avenue with a different type doc.  Pain management doc or neurologist???  Have you as well looked into alternative help, such as yoga, acupuncture,tai-chi, etc, et.  Tons of these options have helped many of my friends.

Yes it does end when you give up, so keep on asking questions and you'll find a new direction.  Life isn't easy, but when we give up, the party is over....

 Best to you my friend,

Jan 

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

Stunted,

There's still hope.  My body was a wreck after chemo, but in hindsight, it had never functioned properly.  I started seeing a nautropath while I was in treatment.  Not only did she prevent me from having any long term side effects from treatment, she also guided me to a diet, supplements and lifestyle that have gotten my body on track and it now functions as normally as it can.  I feel great.  All the fatigue I had experienced before and after treatment is history.  And my mind is sharper than it was before my diagnosis.  Many of your problems may be related to diet.  I highly recommend the book "Autoimmune: The Cause and the Cure."  I has been a great resource for my autoimmune issues.  It sounds as if they may still be an issue for you.  I wish you well.

Valjo06
Posts: 17
Joined: Nov 2011

Who is the author of the book "autoimmune: the cause and the cure" that you read?  appreciate it. Have a great day. 

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