Sunday, June 19, 2016

Another magic potion

I was having great results with Gilenya but my white cell count kept dropping. I was struggling to fight colds.

I am JC virus positive and a low WBC could give the opportunity for the virus to attack my brain. Not a good scene.

Fortunately my neurologist agreed. I had a final blood and urine test prior to my new medication.

Tecfidera has only just been subsidised in New Zealand so I'm so lucky to have the opportunity to use it. I'm about number 7 in Auckland.

I had the prep talk to prepare for the possible side effects - flushing as far as purple, insane itching, gut disturbance. Sounds like fun.

I've just finished my first week on one capsule of 120mg. A few mild itches and one day of feeling a bit nauseous since I made poor food choices for breakfast. A ice cream cone soon fixed everything.

I now start my dose of 120mg in the morning and evening. Antihistamine at the ready and prepared to grab some antacid if need be.

I have gut issues any way so I have most of the necessary drugs on hand.

Next week I go to 120mg in the morning and 240mg in the evening in preparation for the full on 240mg twice a day.

I bought home about $6000 of drugs, thank goodness for the government subsidises. I'm hoping I have as much success with Tecfidera as I had with Gilenya.

- Posted using BlogPress from my iPhone

Thursday, March 24, 2016

Don't mind me, I'm invisible.

Anyone who parks in a mobility park or uses a disability toilet knows that there are two types of disabled people - the obviously disabled and the 'invisibles'.

The obvious may use a wheelchair, a walker, crutches or a white stick. No one bats an eye when they pop into the disability loo or park in a mobility space (unless they get out of the driver's seat and starts using their white cane and then there will be much eye batting.) The invisibles may walk with a wee shuffle or drag their feet or they may look like your next door neighbour. When they park the car and get out there will be keen eyes checking for a mobility pass or even informing them that they "can't park there." When they use a disabled toilet they may be abused by a wheelchair user who has been waiting outside or even just a member of the public.

Invisibles are those with hidden disabilities such as MS, a stroke, an autoimmune disease that means when they have to use a toilet now they have to use it NOW. They may be unable to get themselves up off a regular toilet, be self catheterising, be noisy due to their disease, need the extra space because their limbs can be uncooperative. They may be able to start off walking easily but tire easily or move slower than your average shopper or cafe customer so need the extra time a disability pass allows them.

These are the everyday prejudices invisibles face but they can also face 'discriminations' due to being invisible when seeking other things in life. In New Zealand we have the disparity between those disabled due to an accident who come under ACC and those who are disabled due to medical or congenital reasons who depend on the health dollar. After an accident you can get your house remodelled and some nice tools to help you live as normal a life as possible because you weren't injured on purpose (unless you were driving drunk and that doesn't seem to matter.) If you develop a disease or are born with a disability that wasn't caused by medical mismanagement then you can apply for grants to get the necessary adaptations but they are capped. I could get $15000 towards a chair lift that I didn't even want but that would have been my limit.

There is another disparity which is part and parcel of the disabled toilet issue. The public like to be able to see your disability. Try getting funding for an activity you want to do. If a blind woman gets up and says I need X dollars to do this or a guy with an above knee amputation asks will you sponsor me they are more appealing than the woman who looks perfectly 'normal' who has got herself up and out into the world and wants some help making a dream come true. Never mind that she struggles to keep up with the blind woman and finds it just as hard to get up off the floor as the above knee amputee. 

A young girl with Crohns has put forward a sign for disabled toilets with the wheelchair figure accompanied by a male and a female figure both labelled with hearts to represent hidden disabilities. An excellent idea that wouldn't be out of place on the mobility parks. Alas no new signs are going to make the public embrace the invisibles. They look just like you and me so they don't get the 'look at me being so altruistic to the poor disabled person' buzz from them. Maybe I'm just a cynical old grouch but don't mind me I'm invisible.

Saturday, June 27, 2015

Stop, wait a minute

I've been having a few problems with my foot. The screws have been bugging me and it aches around the ankle. The solution - remove the screws so I can have an MRI.

Last Monday I had the screws removed under spinal. I hobbled around for three days with my foot wrapped in crepe and cotton wool. I was then told to remove the crepe and "fluffy stuff" and just leave the clear dressing on until I saw my GP at day 10 for removal of the stitches. Fine, apart from the fact there was no clear dressing! I had to go and buy an onsite dressing. 

I can water walk and bike after two weeks and run after four which is nice but my Wellington Half falls dead on two weeks. I obviously can't run it but I need to decide if I can walk it. Monday - two days away- is my d-day to decide.

Watch this space.