Friday, January 27, 2012

I think I lost January Somewhere

Has anyone seen it??

Last night The Man bought me a new Android phone. Now I don't do technology all that well. What I have instead are 2 appointment calendars, some headphones on a cord, and a MP3 player that I only know how to turn on, select my audio book of choice, and then turn it off again. I NEVER touch the remote on the tv! And when a technician comes around and tries to explain something to me I always say 'Talk to The Man'. That or 'Back away from my noggin if you know what's good for you! It may go off at any moment!!'

I only mention the phone because he was inputting my appointments for me. When I happened to see yesterdays date I was astounded! Where did it go? What happened to January? Glancing through my calendars I see that my January went with all the doctor appointments I had. If you are like me and can only tell the day of the week (not necessarily the month) by your next appointment - then there is something sadly wrong.

I'm beginning to wonder how many hours my backside has warmed those uncomfortable seats you get to sit on in a waiting room of any kind. Where do they find those chairs to begin with? Now I have to buy different pants to fit the shape my buttocks have taken on.

Let's get back to that phone again. I'm telling you right now that I'm probably never going to learn how to use most of it. And if anyone catches me texting - just shoot me! Ack - digression!
What I keep meaning to say is that nearly all of January has been filled with doctor appointments. Don't you wish you had my life?

Uh - No - you don't. Believe me.

At present we are once again waiting for an appointment with a specialist. As we all know, here in Canada it can take an awful long time to get in to see one. Where they used to say up to a nine month wait, now they are saying a year's wait. Most of us have learned to be patient or forget about it altogether. That way when the call finally comes that you DO have an appointment - then it's time to bring out the cake (and the ice cream of course)!

But this time around is supposedly very different! This time they believe they know what has been causing all the pain and everything else. Three years of plodding along, smiling and 'Keeping my chin up' have been hard, but I've done it. I believe I've paid my dues many a time and now I just want to get the results from the latest round of tests and deal with it all.

I'm looking for anyone who has any of the following:

Porphyria

Lupus

Fibermyalgia

Celiac Disease

If anyone has either one of these diseases I'd appreciate contact and an exchange of knowledge, or support, or just a pat on the head in passing.

As it stands at present, tests have shown that I have all four of these diseases. That in itself is a little unusual and some of the diseases have the same symptoms, so we await the last round of tests for more positive results.

It is not the end of the world certainly but my doctor has once more asked me if I have my Living Will completed. A gal couldn't be having more fun I tell you! And if they can get rid of the pain that has taken over my body for over 3 years, I'll be a happy camper.

So if I say I've forgotten - I truly have. My short term memory stinks. Reeks even! It could be a number of things (obviously) but it could just be a result of the pain medication. In fact, we have found out that some of the pain medication was a trigger and causing me more pain! Even food can be a pain trigger - Hello smoothies! Do you know - I've never had a smoothie until this forgettable month!

I could go on and on - (snore) but I'm going to call a halt to this post right here. Any info or whatever will be gratefully appreciated. I promise!

Now I have to go answer that phone - (I think).

7 comments:

Maggie May said...

That is quite a list of things to suffer from and I am really sorry to hear you have so many things to cope with.

As you know, my daughter has Coeliac disease and manages fine with it. She does resent not being able to eat normally though and wishes that there would be some kind of injection that would make it possible to eat anything without a problem.
I have a friend with Fibermyalgia and she is on steroids to control it. She hates being on steroids because she feels tired all the time and has put on weight.
I knew two people with lupus and they also had to go on steroids to control it. The pain did ease off though.

Anyway all these illnesses are auto immune diseases and means your body tries to attack itself. Hoping that you get it sorted soon & that the treatment will be easy and successful.

I don't know where the time goes to either.
Lovely to hear from you again.
Maggie X

Nuts in May

Leatherdykeuk said...

Good to hear from you, Aims, but oh dear dog! What a list of ailments. Poor you!

aims said...

Hi Maggie - I was diagnosed with Celiac Disease in 1992. Just recently I have been reading about a couple of drugs they are testing that would either let us eat gluten/ or make the results easier to handle. I'm not quite sure on either but I do know tests are going on in the States. They called me to participate but as I live in Western Canada they didn't have anyone doing any testing in this area. Maybe next time!

As for the rest - you've nailed it on the head except for the porphyria I think. I believe that because I don't make heme - that the porphyria attacks my organs unless it is kept under control. Managing the pain is the most difficult thing to experience. Mix that all in with the Lupus etc. etc. .... Every day is a good day I think.
btw - Have been thinking of you and wondering how you and yours are doing. I'll stop by.

My dear Rachel - sure it's quite the list and all of it involves pain - but at least I finally have a list. Not knowing was far worse than this. Hope you are well. I definitely need to start my rounds I think! :0)

Akelamalu said...

So sorry to hear you have so many healthy problems and such long waits to see a specialist.

I recently aquired a new android phone and I love it! Get into it Aims, it could take your mind of your health problems for a while.

Hope you get a proper diagnosis soon and the right treatment. In the meantime I'll send you positive thoughts and oodles of Reiki. x

ADDY said...

I have been worried by your long absence and did not want to email in case you felt under pressure to answer,but was so relieved to see you had posted. Not so reassured by all those items on your list, though. At last you have a name for them now but still no cure in sight. Do hope things improve massively soon.

Living the Dream said...

Oh aims, I wondered why you didn't reply to my email, now I know. Like you said, at least you know now and can move forward to deal with it all. I am sending you a virtual hug.

Daryl Edelstein said...

All I know about these I learned from annoying television commercials .. I hope this gets resolved ASAP!!!!!!!