There haven't been many changes lately in my status. I continue to have daily cluster headaches, pain, nausea, dizziness and all of the other things that go along with daily life with Mito. That part hasn't changed a bit. I will say though, my Neuro Frequency Ablation has proven to be somewhat successful. Although the big thing is that it will likely be 4 to 6 weeks before the normal "healing pain" goes away. I had the right side done this past Thursday..I have a week break from injections this Thursday, next Thursday I will have the procedure done on my left side. I am very anxious to get all of this out of the way so I can see how well these procedures will provide me with more long term relief. I do ask Dr. S for both Fentanyl and Versed because of my anxiousness as well as the pain that is involved in these procedures. Without the Fentanyl I feel almost everything, so it is good that Dr. S understood my reasoning. Thankfully, recovering from both medications did not take a great deal of time last Thursday.
There have actually been some things happening, come to think of it. Last weekend (Memorial weekend) I had Friday through Sunday off and was able to have some great times with friends and family as well as relax more. I was able to spend some time with a very special someone that has made me so incredibly happy. I did, however get some ridiculously itchy bug bites (I'm thinking from both mosquitoes AND chiggers. UGH!). Between just my legs and my feet I counted over 35 bites! They also swelled up WAY more than they ever should have. My thinking on this is that my body has an especially severe inflammatory response to the bugs. To make a long story short, I tried just about everything I could possibly think of to take away the itching. In the midst of awful desperation, I looked up some home remedies (some which are downright dangerous if I may say so). Nothing worked. I ended up going to see a Physician's Assistant because I was going insane. Between Saturday and Monday nights I think I maybe got 10 hours of sleep. Thankfully, the PA did put me on a steroid cream that has allowed the swelling to go down to the point that there shouldn't be many on there for long.
This is an actual picture of my legs and feet on Monday evening. You can see how swollen and inflamed the bites were.
My appointment at the Mayo Clinic with the Interstitial Cystitis specialist is on July 19th. It will be interesting to see what this particular doctor says about recommendations for my care. I also received an e-mail from a doctor that may help me in seeking a Mito specialist that will allow me to coordinate my care with my other healthcare providers and specialists.
I am also working on a team for the Energy for Life walk coming up at the end of August. So far I only have one other member, and am working a recruiting some more walkers. I am also wanting to get some t-shirts made for my team. I am thinking about some fundraising ideas once I have some more people on board. I really want to have a successful walk this year. I want to do it every year. Hopefully it will go well and I can continue to work toward more awareness and eventually a cure to this awful disease.
Because of all of the wonderful things going on in my life, I am able to continue to go on each and every day. I am so incredibly blessed to have the wonderful friends and "family" both adopted and biological I do in my life. I am working toward a new beginning in my life, and I'm excited about all of the possibilities for my future.
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