It has been so long since I've posted an update!! That's because everything WAS going great the past few months. I've been feeling good, other than a few bouts of tingling in my legs and sharp pains (which have fortunately decreased). I had energy through the holidays, of course remembering not to over do it though. I've been super busy with work, I have a lot more responsibilities now than I did before. And we've been planning Doug's graduation party....YAY!!! The light at the end of the tunnel is getting closer=)
I am posting today though with a bit of pessimism and frustration. I'm hoping that typing this all out will make me feel better. I've got two things to vent about: my eyes and my injections.
We'll start with my eyes.....I'll briefly remind you I have an eye disease called uveitis which is an inflammation of the retina. I've been on steriodal and non-steroidal anti-inflammatory eye drops for almost a year now to keep the inflammation down which in turn keeps my symptoms under control.....but CANNOT cure the disease. One drop is 2 times a day and the other is 4 times a day. My right eye had no inflammation in it 2 months ago. I convinced the doctor to let me stop the drops in my right eye because I was so determined to get off of the drops completely. It's getting expensive, annoying to remember what time to do the drops, and time consuming to leave work to see the eye doctor every month. Well, I saw her last month and some of the inflammation was back in the right eye, she wanted me to start up again on the drops. I refused! So, I continued treating the left eye, but prayed that the right eye would be okay. Well, I woke up Saturday with a giant black floater and a few opaque circles floating around in my right eye. I hated to admit that the doctor was right, but I called her anyway and she worked me in yesterday. She could see an increase in the inflammation and put me back on the drops in the right eye. I'm sooooooo disappointed....am I going to be on these drops forever?? The long term risks from being on the drops for so long are equal to the risks of letting the inflammation go untreated, so it's kind of no brainer what I should do. So, for now and hopefully not forever I will continue to watch the clock to see what eye drops I need to do next=( On to my next complaint.....
When I first started the injections all of the videos, pamphlets, brochures, etc. really encouraged people to stay on their injections.....Don't stop taking them, blah, blah, blah. And I couldn't understand how any MS patient would just stop taking the injections. I mean, the injections have been proven to slow down the progression of the disease, why would anyone not want to slow down the progression of their MS?! Well, now I understand how tempting it is to just stop! I'm so sick of shooting up EVERY day! It's really getting old and EXPENSIVE! My medication just went up. Luckily I have insurance to help me out with a lot of the expense, but for someone who doesn't have insurance, it would cost $2,096.54 for one month's supply of Copaxone!! Can you believe that?! Anyway, the thoughts have gone through my head that I've been feeling pretty good, maybe I'm ready to take my chances without the injections.
Then all of these thoughts run through my head (with the help of Doug), like why would you want to risk your ability to walk and see and work and drive? We all complain so much about all of the everyday things we have to do like work, driving our kids to sports, laundry, grocery shopping, etc. when everyone should be so THANKFUL that they are ABLE to do all of those things! I also think about the future and how I want to be able to play with my kids and take care of them and be the best mom I can be. I don't want my kids to have to suffer because their mom is in a wheel chair or she's too tired to take them for a bike ride because of HER choice to stop the injections. It also wouldn't be fair to Doug.
I also think of all of the people that have a much more progressive kind of MS and how they are in wheelchairs or have to use walkers, they can't work, they can't drive, etc. They would probably do anything to have the abilities that I have right now. They would probably SCREAM at me for stopping my injections, why would I want to risk ending up like them? I also think of all of the older people who suffer from MS who didn't have the option to take injections when they were first diagnosed because they didn't exist. If they had had the option and chose to take the injections they may not be in the state they are in now. They would think I was CRAZY for not chosing to take the injections.
Well, obviously I'm staying on the injections, but I'm just really discouraged lately. If I had some sort of idea if there would be an oral medication in the NEAR future I may be more optimistic, like an exact date when I could start taking them. But, for now I see myself on the injections FOREVER!!
I'm sorry for being such a WHINEY BABY!! I know I have so much to be thankful and hopeful for, but I'm just stuck in a real rut. I'm hoping that with the season of Lent starting tomorrow, I'll find some sort peace and refreshment of my faith in all of this.
I really don't have any encouraging quotes to leave you with today, maybe you can send me a quote to lift me up?