Every journey starts with a single step. My journey started "officially" in March 2006. I started this blog six years into my journey, I often find myself amazed at how this disease taught me a lot....about me. I find the hot air balloons a perfect representation of my journey, with all it's ups and downs....I still soar.
Saturday, September 13, 2008
Almost back to reality...and home
Today is our last day in Texas before we return home. We made the drive to San Antonio after being able to change our flight tomorrow from evening to early morning. We didn't want to make the 2 hour drive in the morning. We would have had to get up WAY to early. (I am not, never have been, nor ever will be a MORNING person. My husband, bless him, knows that and likely did not want to have to deal with trying to get me moving as early as he would have had to). I even did one of my treatments on the drive from Corpus to San Antonio. We have an adapter that lets us plug in anything to a car plug in, so I did the 40 minute treatment for my left hip pain on the way in. It was great! So far, I'm very pleased with how the treatments seem to be going. It's amazing to have blocks of time with no pain. With the MS I have shoulder pain, wrist pain and misc. aches. Not to mention the terrible muscle spasticity that seems to have a mind of its own no matter what I do. In fact, the muscle spasticity really messed with the treatments this week. I was supposed to have the rest of the testing completed on Wednesday. However, I had a really bad bout with muscle spatiscity Tuesday evening, and Dr. Rhodes put a nix on the testing of the right side of my body. The testing consists of them wrapping electrodes around your toes to start, and sending electrical impulses to them. You tell them when you feel them. It tells them how sensitive the nerves are to the impulses. The interesting part was that you could feel the impulses anywhere! I felt them in my calf, my ankles and of course my toes. Dr. Rhodes felt that my nerves were hypersensitive as a result of the spascity and didn't want to stimulate them any more than treatment required. So no more testing. The days I spent at the clinic were really informative. I learned a lot. The machine I'm using basically stimulates the nerves, the sympathetic nervous system and stimulates the release of neuropeptides. I sure can tell the difference with my pain level. Dr. Rhodes also gave me a protocol to run at night to help me sleep. I don't know about the rest of you, but MS really messes up my sleep. The protocol hasn't worked well with me yet, but like the protocol for the MS, it takes time and I won't see results immediately in those areas. Plus, sometimes it takes time for them to find the right beta frequency for each problem you have. I know he hit the nail on the head with the frequency for my pain though, as well as the frequency to improve my kidney function. I'm peeing all the time! Which is great. It means all the bloody steroid water weight is coming off. It also means that the MS protocol is working and improving my general circulation. Which is a MUST if my myelin sheaths have any hope at healing. I'll be heading back to Texas, likely in November (I'm trying to wait until Hurricane season is OVER after this last experience, thank you very much). It will depend on how I do. If I notice the machine doesn't seem to be helping I'll be back sooner. (which SHOULD happen as the serves get used to the stimulation. The frequency and intensity will then need to be adjusted. So I'm actually HOPING the machine "stops working" in about 6 weeks or so). I know with MS, nothing is a guarantee. However, for me, when you have the fight with MS like I had this summer and they are telling you what treatment options are left have very high risks of cardiac damage etc. well......NO. We have to make our own decisions as to what risks we are willing to take. I'm still going to go to UCLA. I'm going to listen to what they say, but, it's all a crap shoot. So, I'm taking my chances on Dr. Rhodes. This treatment is non-invasive. It's not been "black boxed" by the FDA and it's made me pain free. So far there isn't a negative. I'm still taking all my "traditional" MS meds. Rebif, Neurontin, Klonopin, etc., etc., etc. I'm not stupid. While I wish I could just stop all the meds, I know I can't. I'm still walking with a cane. I'm realistic that there is no miracle cure. However, I'm giving it a shot. I'm hopeful, optimistic and feeling good. Healing begins in the mind and with your attitude. It's all about faith, hope and trying. MS hasn't taken any of that from me. I won't let it. It may have messed up my vision in the right eye, my left leg may be very unsteady and untrustworthy, my hands may tremble and drop things. I may tire very easily. Yet, somehow, call it sheer will or determination; Hope, Optimism, the Will to keep going and faith remain strong. MS may yet kick my butt. I may yet end up in a chair. BUT, no matter what happens, I'll know I fought this disease with everything I have. It may push me up against the ropes again like it did this summer. I expect it. I hate it, but I do know it will try. As I will try with everything I have to fight against it. Even if it means trying "nontraditional" treatments like the one I am now.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment