First of all, on a very positive note, it's the first day of summer! Something to be happy about for sure. My Grandpa was telling me yesterday that it basically means that I start school in about eight weeks but I'm not going to let him get me down! No way!
That being said...I did have an appointment with Dr. Green today. On the plus side, the Cardizem is doing its job in lowering my heart rate. Something I am incredibly grateful for, because at least it means things aren't getting worse in that respect. We were both very happy for that. That being said, many concerns were brought up that unfortunately are not going in the right direction. My weight is down, which is not good. Nausea has been fairly constant and my appetite hasn't been great. So, that's not good. In addition, he stopped the Amitriptyline, which was helping control my IC symptoms at least a little. So at first, I wasn't sleeping hardly at all. This fact definitely didn't help my energy levels, and as a result I was not able to get out of bed for very long periods of time most of last week. Just the act of getting up to go to the bathroom, get something to eat, or shower was incredibly taxing. After discussing all of these issues, we finally came up with a plan that I am somewhat satisfied with.
We stopped the Paxil, because having me on a whole bucket full of medications really isn't something I'm overly interested in. Not only that, but Dr. Green only wants to do what is in my best interest. Being on that much medication is clearly not that. So now instead of being on Paxil, he wants to start me on Notriptyline, which is a Tricyclic Antidepressant similar to Amitriptyline. Hopefully this will help with the IC symptoms. For now, we would like to leave the Topomax alone, because I don't really want to have seizures any time soon. There was also the idea of starting me on a stimulant, such as Adderral or Ritalin, but again, we don't want to add medications too fast. In addition, we also discussed him calling me every Friday so that I can update him on changes as I need to. I told him that I already know what is wrong with me, that I've known for quite some time. He very seriously asked me what the treatments are. I basically explained to him that treatment was focused on symptom management. Also, he admitted that he really didn't know much about Mito. But, he did take the time to make sure that the medications I'm on do not have adverse affects on people with Mito. I feel that some progress has been made.
The Energy for Life Walkathon is approaching soon. I need to start getting some fundraising in place. I know for sure I want to do another Tip Night at Pizza Ranch but I really want to do some other type of fundraiser in order to raise a little more money than last year. OK, five hundred dollars more than last year's goal. Oh well. But I think it's well worth it. I'm also working on building more of a team than I had last year. So far my efforts are beginning to pay off, but I still have some ground to cover. I was also hoping to get the local newspaper involved so that we could get some more awareness raised in the community. So few people have any idea what Mitochondrial disease actually is, and to raise awareness and build more of a team would be phenomenal. Obviously, that goal is a bit far-reaching, but I think it's definitely attainable.
This weekend there is a family get-together. I'm looking forward to seeing Grandma Ev. She is in the nursing home out of town after suffering from a stroke last year. The stroke has left her speech very severely affected, meaning she is not able to speak much at all. Some family from out of state will also be coming. I am hoping my energy levels will allow this to happen and also that I won't have too many problems. Tomorrow should be a fairly low-key day. I need to have a plan in place as far as small meals go. Clearly what I've been doing has not been working. It looks like I need to purchase some snacks and things to eat as well as some supplemental nutrition to help me through this funk. Just par for the course. It looks like my Mito is progressing. This is how things are and I've accepted things as much as I can. I'm doing my best to stay positive and keep a smile on my face through all of this. Maintaining my humor (cynical though it may be at times) is important to be able to roll with the punches. It looks as though I'm to accept a new normal again. Life is a constant adjustment.
I am waiting for my approval to test from the state and then will be scheduling myself a time for state boards. To say that I'm nervous is pretty much the understatement of the year. My hope and prayer is that I pass the first time, because I can't afford to pay for another test and I have to pass by August 1st to get into the RN program. That, and I would like to start my job as a nurse in a respectable amount of time before I start school again. As I said, constant adjustments.
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