Dealing with me!

Today I had a follow up appointment with the Rheumatologist.
We were to review the MRI's performed on my hands a couple of months ago.

On my left wrist, there was evidence of osteoporoisis and the cyst of fluid which is visible on top of my wrist. The right hand shows evidence of  wear and tear in some places from the iron overload.

Was told that would explain the symptons I've got.
Last time I saw him, he didn't want to label me but told me to look up "Camptodactyly"
Today I told him that I looked it up and that it was so depressing that I had to look up Thalassaemia just to make myself happy. His reply... "That's what happens when you know too much" ...Hmmm is he having a dig? is what I'm thinking.

This is the second time I've have seen him and I still do not know what cause of action I should take.
I've been lucky to have a hand therapist that I get along with. She has been giving me two splints, one on my thumb and the other on my finger next to my pointer to stop the locking.
She laughs at me alot as I'll try anything. Had to learn how to hold a pen and write with the splints, manipulated the splints so that they worked for me and got them totally dirty from over use.

I'll be going back to her in two weeks time and look at other ways to ease the pain in my left wrist.
As for the specialist, I'm not seeing him again unless my symptoms get worse.

So as I told him, I'm gonna continue adapting things to help me and what I can no longer do... I delegate to my family. That's one way to get out of peeling. hahaha

I have to laugh as I might cry from fustration.. I am chelating and am waiting for my haematologist to get back to me in regards of the IP6 but I would have liked some suggestions on easing the pain. He doesn't understand that I don't want to take paracetamol because it doesn't work and I have enough pills so when the pain is bad I put my hands in hot water. It works for awhile.
I was also told that if I'm not diagnosed, I could lose my hand therapy but the specialist doesn't like to label.

But I'm okay, I'm determined to get the ferritin down and prove to him once and for all, it's not caused by my diabetes.

 

I pray that you get well soon and hope that your docs are more cooperative from now on.

Thanks Sajid, 
I'm just so fustrated but its great to have a place where I can off load my thoughts. I'm gonna get through this with or without his help.
I'm too stubborn to quit and I have friends & family that care about me
I'm too stubborn to quit and I have friends & family that care about me
Keep saying this and I'll get there aye Sajid

Hey cherieann,

Have you seen a pain management team at all? Or has your doctor offered you any long term pain relief?

Why I am asking is because I have chronic back pain from jan of this year, due to osteoperosis and some degenerative formation of my bones... They have put me on long term pain relief in the form of a opiod patch, thats what I can only take since I have Hep C and cant take any other medication for the pain..

Talk to your doctor and see what they say...


Oh by the way guys, I am back kind of to my normal self...Will be replying more frequently... Just had a rough time with the interferon and ribiviron... I have had to stop treatment unfortunately due to all of the side effects it has...

To be honest with you all... Glad I am off it... Wasnt worth all the frustration and tears and everything else that came with it...

Take care

Good to see you back

Hi Cherieann,

My prayers are with you, i can understand the frustration,but i believe in you and i know you'll get through this phase too  .

Smurfette,

Glad to see you back ,welcome back  .

ZAINI.

Thanks to Sajid, Zaini & Smurfette for your encouragements.
Yes this is just a phrase where like you all, I will need to conquer for myself but I just so fustrated with doctors where they can't see past their own ideas and look at the wider picture.

In answer to your questions Smurfette, the answer is no to both.
The specialist's idea is to take paracetamol. 
I'll ask my haematologist about the patch. She helps me more as she sees what I'm dealing with.

My haematologist has referred me to the hand therapy team and my hand therapist is awesome but she knows I will fall through the gap if the specialist doesn't give me a diagnosis.
All I can do for myself is delegate what I can't do, chelate, use my splints and ease the pain through heat.

I have osteoporoisis too but at the moment that isn't causing problems. I have been told that I can't over do things with my hands otherwise I will lose the functions sooner.
Its a real juggling act as I am not ready to give up my job with the special needs children. They keep me going. I'm gonna have to cut my hair soon as that is a mission to plait and my husband and 10 year old niece set up the desferal for me as I can't manipulate my fingers without them locking.

I'm in the process of writing a letter to my government regarding chelation through the pill.
My haematologist has sent through 2 requests for the funding but has been turned down.
Now I want to have a go as its not just about me but the other people here in New Zealand.

I'm sorry to hear about your situation Cherieann,
I hope that you are able to find a way to alleviate your pain soon.  I also hope that with your determination to chelate you are able to lower your iron levels soon. 

It can be very frustrating trying to be understood sometimes, at times I think that doctors like for patients to neatly fall under certain criteria and for them to follow the same protocol.  This works some of the time, but we are individuals and we sometimes fall on the short side of statistics. 

I hope you feel better soon,

Sharmin

I'm in the process of writing a letter to my government regarding chelation through the pill.
My haematologist has sent through 2 requests for the funding but has been turned down.
Now I want to have a go as its not just about me but the other people here in New Zealand.

Governments don't approve anything unless it has something of interest of their own.

Like our Desferal case is pending. I wonder why they are not giving an OK to our Desferal. Perhaps Novartis is paying more (import tax+sales tax+bla+bla+bla) to get their meds here while a local company would be paying a simpler combination

You're probably right but as we are funded for the desferal, I'm hoping that its a case of ignorance.
If I can make them aware of the alternatives and the benefits, maybe they might change their minds.
Put through a patient's view they might see the benefits rather than paying for more medical treatments which could have been avoided.. eg.. iron overload and what that could mean...

They'd rather pay for the chelation instead of the costly long term treatment of complications caused by lack of chelation.

Best Wishes for the outcome

Thanks Sharmin, you are right about some doctors. If they could they would put us under one description and if we speak up... we get passed on as too hard.
Don't worry, I'm coping with the situation but as each day passes, I'm getting into my ""in your face mode" I just need to be tactful.

Thanks Sajid

Hi Cheriann,

Well in my circumstance I am not allowed to take any paracetamol or any ibuprofen, due to the Hep C, as for it will damage the liver more..

I have been in constant pain before my pain relief... You referred to wearing splints... I have had some made for my wrists and fingers from my physio, they work wonders when I remember to wear them 

I dont have that kind of problem like you do with your fingers locking all the time... I am back on L1 and havent had to use my pump..I am getting infusions of desferal everytime I go in for my trans, once that has finished I am chelated as well... That wont be for long...

Sajid and Zaini thanks for the welcome

Take care all..

Ps if anyone wants to know about interferon and the side effects it has.. Dont hesitate to ask...but I am not saying that I wont work for all...It just didnt do much for me, just gave me the side effects and nothing else... lol...

Thanks Smurfette,
I am coping in my own way, I just get annoyed that I end up having to come up with solutions myself with no advice or support and then they turn around and say that seeing as her pain has lessened we won't see her again unless it gets worse. It hasn't even gotten better.
Never mind, I'll find a way but thanks to all you guys for your comments and advice. I don't feel as alone.

Thank-you
       Cheriann,
You are right,
Life is a better place because of this technology, The people on this forum  is priceless and they are true friends
Keep trying
Kathy