Time to tell my story

[Steamboat]

Hi Everybody,

I have been reading and making the odd post on this forum for a while and it is now time to tell my story.

I have bd and live in Australia. In November 2008 I developed problems with my left eye, went on a long holiday and developed all the other symptoms(ulcers,painful joints, skin lumps & tiredness )and then was diagnosed. Very lucky compared to most of you. I was stared on prednisone (50mg) & methotrexate. This went ok until the side effects were too hard and I was changed to cyclosporine. Again this was ok until I developed kidney failure. Moved to interferon then infliximab. During this time I had many addmissions for lengthy periods up to 3mths.

Then I had a bowel perforation needing a colostomy, obstructed kidney needing a stint and was started on Asa but due to my liver failure and continuing kidney failure they needed to stop. Started on cyclophosphamide but lost my white cells and needed the rescue drug. So went to the oral dose with humeria. I also had shingles and positive TB test but couldn't have the treatment due to liver problems. During this time I also seemed to get periods of haematemises needing endoscopes and blood transfusions.

I stayed on the cyclo& embril (changed from humeria ) for a while but following a bone marrow biopsy my bone marrow was giving up. So next combo is micophenolate,tacrolimus, 50mg of pred and every 3wks IV methyl pred.

My last 6 addmissions have been via ICU due to sepsis and now with seizures as the bd has spread to my brain. The effect on my eyes has left me with only 20% vision. So things are not so good at present but we managed to get travel insurance and hope to go to the US in January for a ski holiday ( not sure how that will go with the vision but worth a go)

I can see the wonderful support that this forum offers and it stops you feeling sorry for yourself. I have been in contact with Lesley and that has been great.

Wishing you all a wonderful holiday.

Best wishes,

Felicity

[andreafm]

Thank you for sharing your story Felicity

It must have been diffciult for you to relay what has happened to you because of this condition. Other People and Doctors do not realise just how much of you life can be robbed because of it and sometimes, because of medication problems.

I too have vision problems and brain/spine symptoms which are still progressing, but lucky so far that I have't had seizures as such, but am having complete memory loss episodes. I am awaiting Inliximab infusions and am noticing my condition going down hill even from what it was, before I stopped the last medication.

You are very brave to contemplate a ski holiday but applaud your get up and go. I too have tried to live like this and had a very enjoyable winter Motorhome holiday a couple of years ago in the Alps in Switzerland. The air was so clear and inspiring and I still think back to it now and wish I was still there. Didn't go ski-ing but still had such a wonderful time in the snow...not at all cold and wet like the snow is here in the UK.

I do hope you have a wonderful time and please let us know how the holiday goes...a photo would be good.

Andrea

[lesleyg]

Hi Felcitiy

I have been 'off the air' for about 4 days. Was nice just doing nothing after 'almost' catching up on everything with work.

In one way it is a bit scary reading your story. On the other hand it's good to see you have been through so much and are still planning you next trip.

As has been said before - this group is made up of a lot of very determined people.

Here's looking forward to a brighter 2013 for all of us!

Best wishes to everyone

Lesley

[SuenMike]

Hello Felicity,

What a horror story you tell, but good on yer to batton down the hatches and get on with living.

I hope you get to US for the snow. The rarified air will make you feel so alive!

I hope you have a Happy Christmas, and a happy and healthier New Year .

Best wishes, Suzanne x

[Steamboat]

Hi Andrea,

Do you have any hints with the vision loss. I am finding that I am walking into things,constantly spilling things,dropping things. If I poor liquids I need to hold the side of the glass otherwise half goes over the counter and it goes on.

With the other brain problems I have memory loss but not complete like you,that must be terrible for for you and very frightening. My neurologist suggested a wall calendar and a place for everything and everything in its place (easier said than done) so I stop getting so upset with loosing things. I also have problems with speech, it is very slow and swallowing, they put a tube down and then feed me that way,extreemly unpleasant but does maintain your weight!

Let's hope these awful things are quiet over Christmas so we can pretend they are not there (my best way to cope)

Merry Christmas and best wishes, felicity

[andreafm in reply to Steamboat]

I keep bumping into things as well or knocking glasses over and I have just learnt to compensate for it. Found it really impossible to begin with but now it has become a fact of life. Funnily enough I have a yearly wallplanner, in fact I have got 2. 1 upstairs and 1 downstairs. The complete memory loss is a new thing since I was in hospital in November, it was really bad then but thankfully not so bad now so hoping this is a temporary thing. My G.P has asked me to keep an eye on it....find that funny really. How can I keep an eye on it if I don't remember

My spelling and grammer are getting more of problem now as well so sorry if my spelling isn't great. Thank god for texting talk and forums as it is more acceptable nowdays...even though I don't like it really.

The feeding tube sounds pretty frightening...I have speech and swallowing problems and have a liquid diet [milkshake ensure] when things get bad.

I hope your symptoms are quiet for you over the christmas and preferably stay that way for you as I know how just how difficult life must be for you, because I am finding it really difficult myself at the moment.

My family [mum and son] really don't understand all I am going through, so talking to others like you is a big help...although I wouldn't wish this on my worst enemy.

Thanks for your input felicity and have a lovely christmas too

Andrea

[Steamboat in reply to andreafm]

Hi Andrea,

Funny to keep an eye on it!

I also have trouble with spelling and grammar, my friends laugh when I send a text, especially as I can't check it as I can't read it when it is too small.

The feeding tube is worse than being venilated while awake. I made a lot of bargains with the docs but had to watch them as they tried to change things while I was asleep.

I am very lucky that my Husband is a newborn intensive care doc and both my kids ( 1 girl,1boy) are both doing medical study so they do understand but i am finding my kids will take me to medical appointments but will no longer come in. I think they don't like hearing the reality.

My life at present is pretending all is ok as we are planning a trip to the US Jan 2nd. My husband is very anxious (an rightly so) but I need to get away from reality. My rheumatologist calls me very often and I am sure she would like a break as well.

For us it is the 27th, my husband had a quiet time at work an I made it 1 of our 3 invitations for Christmas day and it was wonderful. I was very lucky. I hope you were as lucky as I was.

Enjoy the rest of the festive season

Felicity

[Steamboat]

Hi Suzanne,

I am sorry,I didn't mean it to be a horror story, just hoping my story could offer some help to others. My story written is much better than the reality and if you see me. My hair has fallen out from the medication.

But I have my fingers crossed to get to Colorado and hopefully will have good good stories to tell.

Merry Christmas and best wishes,

Felicity

[MrsVMac]

Hi Suzanne

I'm from Canberra and was diagnosed with BD after 15 years of being diagnosed with arthritis.

I was interested to read that you managed to get travel insurance (and I'm assuming it covered your health costs as well) and wanted to ask you which company provided it as I've been unable to find a company to cover my health costs if I chose to travel overseas.

kind regards

Vicki