Hello old friends, I hope that you haven't totally forgotten me after my absence from blog land of over four months! I have missed you all more than I can say, and I hope that I can get caught up on all of your lives and start blogging and crafting a bit myself! I have to warn you, that this is a very long post...I will try and keep it as short as possible, but I do want to get you caught up on our lives:)
I am losing my drivers licence due to my vision:( It never really returned after my Optic Neuritis, and my eye specialist and optician have decided that I am not going to get better, despite the new and very expensive eye glasses! So come the end of July, the only wheels that I will be in charge of are on my walker!
I finally went to the doctor and got put on anti-depressant meds five weeks ago....and they are starting to work!!! Simply put, I am starting to complete my thoughts, and I actually even made a primitive wooden maple leaf flag sign from start to finish!! The very first thing that I have finished in a very long time. I even went to visit my hubby's aunt for an hour the other night, all on my own, totally spontaneous, the first visit to anyone in a year, without my hubs! It seems so silly to be so thrilled with such small improvements, but I had gotten into a deep hole mentally, so any improvement has been greeted with joy by me. This Celexa is one of my many medications that I am thrilled to take:) It hasn't helped with the fatigue, and my brain seems less tired and scrambled.
My MS has now been offically changed to Secondary Progressive MS, and sadly there isn't a medication invented yet to slow or stop this kind of MS. Simply put, it means that I don't really go into 'flares' or remissions, I will just slowly (well not so slowly) continue to get worse. There is no treatment for SPMS, although both of my Neurologists changed my therapy to Betaseron which is also from the same group of injectable MS therapies that my Avonex was from. Instead of giving myself a needle every week, I now give myself a needle every other day. The most common side effects of Betaseron include lymphopenia, injection site reaction, asthenia, flu-like symptom complex, headache, and pain. I was quite sick when I started the Avonex as well, but it subsided to a manangeable level after a few months. Of course that was only one day a week, whereas this is every other day...YUCK! The funny thing about this treatment is that it will not slow the the damage from the MS, but will hopefully make the symptoms less severe. So far, I am dealing with the side effects fairly well. At least I will feel like I am doing something, anything even. Life could be so much worse, but I think that I had to grieve for the loss of independence and the physical things that I have been struggling with.
I joined an MS support group, and am having weekly counselling with an MS counsellor, and that has been a great help. The first meeting I went to, I was floored when I mentioned some symptom that I was suffering from, and everone knew exactly what I meant!! It has been so very educational, fun, and is teaching me how to make life easier with this monster on my back. If I had to get someone to roll me to the biweekly meetings, I would...its that important to me. Gail, my MS counsellor and otherwise known as a guardian angel/saviour/therapist: spent hours helping me with my 89 page disability form, with the result five months later that I was approved for Canada disability pension on my first try. Gail is amazing, and the MS society, and all of the MS sufferers in the Peterborough area are blessed to have her. Mind you, she really makes me open up, and always knows what to say. I truly would be lost without my Group, and Gail.
My time spent gardening is at a much slower pace than what I did last year, and I have filled in some of my garden beds with grass seed. I use my little garden cart to sit on, and I just plug away at it:) My daughter Jess has taken over the grass cutting (which I used to love to do..I really did love it) laundry, vacuuming, and floor washing for the most part, so I am truly lucky in that respect. She has finished school and is still working at the Red Cross, but would like to get a job in the field that she has been spending the last three years learning about, which is travel/tourism/hotel management. I do not want her to spend the rest of her life worrying about me, and we have talked about this a number of times. She says that she would like to start really living her life, but truly, I think that we are all suffering from depression, as caregivers often do. I would miss her like crazy, but would love to see her working in some exotic location for awhile.
While my brain is starting to become a little more clearer, and starting to feel somewhat at peace with the way life is going, hubs decides that its his turn for tantrums...Sheesh, I simply do not have the energy to deal with that, and said so. I don't know how much my life will be changing in the next year, but I do know that I have a wonderful support group of online friends, family, and offline friends...so I'll be fine. We are trying to communicate more with each other, and it's very hard, as we both are terrible at communicating, and we are often thinking one thing about the other person, and we are totally off base. This is something that we will really have to work on in our marriage, because the coming years are going to be challenging enough for all of us.
As my head and heart are getting into a better place, I hope to actually finish some of the many projects that are sitting here waiting beside my red chair in my comfie kitchen. I have had quite a bit of numbness in my fingers, so I can only stitch when my fingers allow. I did do some painting yesterday, and dropped the large, paint loaded brush three times on my beautiful wood floor. I always was a bit of a klutz, but now I am the chief of klutzes! Funny thing though; I went into the kitchen to wet some paper towels to clean up my mess, and because I don't have any feeling left in my toes, I didn't realize that the paint had splattered my tootsies too! I ended up leaving toe prints all over the damn kitchen! Today, I am paying the price for overdoing things, and have had to use my walker in the house, and have Jess feed me my dinner as my hands were rather useless. Poor hubs, had to hoist me out of my bed, my chair, then the island stool like a sack of very heavy potatoes. Its a good thing that he has been working out, cause those arm muscles came in handy. I am much better now, and have forced myself to do some typing to get the fingers moving. Most of the heaviness has left my legs now, thank God.
I have also slowly been reading the messages from my groups, and I hope to post more often now. Who knows, I may even blog a little more often than once every four months!
I am so very grateful, thankful, and thrilled to know that you all are still wondering about me after such a long absence, and am blessed to have you in my life.
One last wee bit of news....we are going to be grandparents again:) Jake and Kerri announced on Fathers Day that they are expecting, probably in late February. Baby Owen, will be just turned two when the new little one arrives, so it will be a very busy house!
Photo above is of: (left to right) son Jake, Me, baby Owen, DIL Kerri, DD Jessica, Hubs Jeff, and our euro son Adam.
So slowly but surely I am coming back, and many thanks to you for caring,