Bad Days Do End.....

Here we are just over one year from my "official" diagnosis.  One year and I know a few more things than I did a year ago.  That's a good thing, right?  I have connected with people who live with SCA and other forms of Ataxia. I have never met these people but I think of them as friends.  I converse with these friends on a pretty regular basis through social media of some sort.  They are some pretty cool people and if you didn't know they had degenerative neurosurgical disease you would have ZERO clue that they struggle everyday.  Hell, I feel pretty normal just seating here typing this blog. Then I remember that I am typing more than half the speed I used too and I can only see properly if one I eye is closed.  Sure the trip to ophthalmologist was great but it seems I traded one problem and replaced it with another.  I think these friends of mine are pretty amazing, they struggle and I try to help them with experiences that help me. I think when you live with this kind of disease you sense of humor becomes very sarcastic; and I was already pretty sarcastic. For every single one of you that support me, I apologized in advance because this isn't going to be one of those smart ass everything is hunky dory blogs! It isn't all gloomy but I'll try and end on a positive note - so let's save the good stuff for the end.

My Vision -  Next to my 0 balance and speaking problems the vision is probably my biggest struggle. I know I saw the specialist in June and for a little over a month I thought this was gonna last, and for distance things have mostly helped. But short distance seems to be taking a hit.  Then I have found that once and awhile if I am reading the letter shake.  A couple of blink it goes away.  It was happening once a month now every few weeks.  I called the ophthalmologist. He mad a few suggestions and those seem to help but he will look closer when I go back in 10 days.

Migraine Headaches - This is a new thing.  I never really understood what I migraine was.  I do now! The vomiting, light sensitivity, and loss of appetite is not a fun touch to throbbing headaches. I will take the normal ones back because I can't do shit with a migraine.

Sleeping - The sleep meds work - maybe a little to good because dragging my ass out of bed some days in easy.

Speech Therapy - I started with a new speech therapist a few weeks ago and I think this is one of the highlights of my week.  It is a little too soon to say if it will help me maintain what speech I have got but she definitely makes me feel very optimistic and is helping me with a few tricks dealing with new people who I have never met because communicating with people I don't know is my biggest struggle as I am very self conscious about talk to stranger because I do sound like I am 12 sheets against the wind!

I sent a letter to the RCMP asking them how they suggest I handle situations, where people think I am driving impaired and obviously not. None of these seems to get the interest of the officers.  I did get a response and they have updated a file for me explaining my condition.  I am not really sure I love that though, for reasons I will get into another time.

Work - This is one of those things  that is extremely frustrating because I feel like I can do more.  I explained it to someone that "Sometimes my eyes are bigger than my stomach." So I do have to pick my battle a little more wisely but, I still think I GOT IT and I want to keep working while my body is still letting me.  My Speech Therapist uses the term USE IT OR LOSE IT! I think that just might have to become my new favourite thing to say!

Tomorrow is another day, just got ......keep on keeping!

Thanks! I feel better now.   See I told you this blogging thing is therapeutic!
Darrin