Thursday, January 12, 2012

Got me some more drugs!

I'm now trying copaxone which is not an interferon so shouldn't do the flu-like thing but may make me feel like I'm having a heart attack and also melt fat but not in a nice uniform way that would be worth paying money for - more a deep pit of despair sort of way! It just gets better and better! And it's daily injections! And it's injections - so unlike injections!

I was late for my appointment because the neuro clinic is on the 8th floor of the hospital through a warren of corridors and I am struggling more and more with walking. I mentioned this again to the nurse. She told me to arrive early for my annual assessment later in the year so I'm rested so I can walk 500m unaided. Ah, I can't! I feel a little like I'm shouting into a void as no one seems to be hearing me. If I continue to relapse it shows that the medication is not working. I keep saying I'm continually deteriorating but no one really seems to be thinking "Hmmm maybe the medications are not working" - I only escaped from the interferons due to abnormal LFTs and unsightly blemishes. The drugs will not cause any improvement, that's up to my body - stop inflaming and I'll remit or be remiss or something. I get that but the sales pitch is that I won't get WORSE. I am therefore it would seem to me they are not working. Perhaps this one will stop the march, one can but hope.

I'm also trying to figure out the logistics of traveling from LA to San Francisco to Anaheim and back to Auckland if I take a wheelchair. I guess I'm going to have to shell out more money and use shuttles rather than buses. Bit of a pain since come April I'm jobless! Oh life is just a bowl of cherries!

Monday, January 9, 2012

Got myself some new wheels!

Not exactly high-tech carbon fibre rigid frame with body hugging upholstery but still beats lurching and not being able to go anywhere. More a Land Rover Defender than a Porche I guess! I chose a folding chair because I wanted a chair I could chuck in the boot easily and to get a rigid frame that I can do that with would have cost mucho dinero. It's 9.5kg after I pop the wheels off (easy as!) so that's only 1.5-2 kg heavier than a rigid. I can dismantle and load it in less than a minute - haven't tried it blind-folded!

Had a good trial at Auckland airport today. I was able to get easily from the carpark to the terminal and not get run over! We went basically the length of the terminal twice with no problems whereas with my crutch and AFOs I'd have been exhausted. It pivots very nicely and fits easily into cafe table spaces. Tomorrow I'll tackle the marathon that is Sylvia Park!

Since I can still stand and move around with crutch or wall hugging then I saw no point in going through the funding process to get the chair covered. If I end up deteriorating then I can go for the bells and whistles carbon fibre like the Ti-lite ZX or a Melrose chair but for now I'm really pleased.

Sunday, January 8, 2012

Two months!

I have been a bit lax! Nearly two months has zapped by. Of course Christmas came in the middle and when you have MS Christmas can present some unique challenges which sap the old energy stores and leave little left for blogging (at least that's my excuse). 
Trying to get through a throng of people can be a challenge when your balance is not too good and you have an 'outrigger' - but then the crutch is good for 'accidental' ankle taps so it's not all bad.

When you use a single crutch then you're left with one free hand to carry all the shopping, get into handbags and search for wallets, carry cups of coffee and table numbers - sometimes all at the same time. I really don't know how people who use two manage! I tend to drop something regularly - in New World I once dropped everything! People are usually quite helpful. The problem being that the ground is just so far away! I no longer read books from the library that dwell on the bottom shelf for this reason.

My plaquey brain:
The lesions in my brain have turned my memory from most excellent to 'what were we talking about again'. So I might buy a present for someone and forget I've bought it and so buy another one. I forgot to turn the oven off when a cheesecake was in it slowly cooling - luckily it was on a low temp so not too much damage occurred when I discovered it 2 hours later. 

Extreme fatigue:
The whole shebang is just so dang tiring! I've actually subcontracted out the food shopping to my son. I write the list, he shops, I sit and have a coffee - what's not to love!

The one big plus has got to be the mobility parking permit! No more circling hunting for a park! There's usually one to be found and they do reduce the traveling distance incredibly.

Now Christmas and the New Year has passed so it's time to get sorted. I had some resolutions for 2012 but can't remember them. 

Tomorrow is a big day - it's wheelchair looking day. My mobility has significantly reduced and I'd rather save my energy for essential uses. A wheelchair to get around shopping centers etc will go a long way to doing this. It will be no use at home thanks to all the stairs and the "Garibaldi St' driveway. I looked at a motorized adapter for manual wheelchairs that might have got me up the driveway but it would have cost over 10000 New Zealand dollars + 399 to fit it + the cost of a flight to Sydney to get it! Excuse me but I can buy an actual electric wheelchair for a tenth of the price!

I'm starting on a new medication this month. I was taken off Betaferon after having hideous liver function tests, red itchy discolored areas on my legs and stomach and generally feeling terrible. It was hoped coming off it would make me feel better but I'm still not getting that remission! I start Copaxone which has had some pretty good press with the women with MS group I belong to.  It's not an interferon so hopefully I'll do better on it. I do feel like I'm bashing my head against the wall when I try to point out to the health beings that I am deteriorating not stabilizing or improving. It is sooo frustrating!

Today I said Simon could have my cherished Garmin - anyone who knows me knows that that is a sign that I've accepted this is how it's going to be and I'm not likely to be running in the Waitaks or doing any marathons on my own two feet anytime soon.

Well that was long and drawn out! Note to self - keep up the entries so they are short and sharp. Now if only I could remember to make a note of my note to self then maybe I'd actually remember!