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.
Thursday, August 21, 2008
The Journey continues.......
Saw my new Opthamologist today. He was fantastic! I admit after my experience with the new Neurologist last week I was more than a bit apprehensive about how he would be. He spent time talking to me, did the exam and then gave me the news I was really expecting, but hoping not to hear. I've developed Optic Neuritis. In fact, he stated I'm in the midst of yet another MS exacerbation. He then called my regular physician, told her he wants me on 5 days of IV steroids ASAP and wants me back down to UCLA. He feels the medications are no longer helping me. (Rebif). He wants me evaluated at UCLA on an urgent basis. I already knew the treatments we no longer being effective. In fact, we had switched from Copaxone to Rebif in June when I had my first exacerbation of the summer. This round of IV steroids will be my THIRD in less than 2 months. To say that right now I am discouraged and disheartened is an understatement. To say this has been a rough MS summer is also an understatement. I'm resting, not pushing myself and staying out of the heat. I've done everything I'm supposed to be doing, yet the MS has been relentless. Muscle spasticity has become my constant companion along with the pain it brings. I've given up trying to do my cross stitching as I don't have the fine motor control in my hands to stitch. I have to be very aware of how I move and walk in order to avoid tripping and falling. Fatigue is a constant, no matter how much I rest it doesn't seem to be enough. Now this. Optic Neuritis. For me it manifested with pain around the eye, blurred vision and a decrease in color vision in the right eye. I absolutely refuse to give into self pity. Frustration...absolutely. In fact, I'm down right angry. I'm doing everything I'm supposed to be doing, but MS marches on. Reminds me that I DON'T have any control over this disease. It will do what it will do. However, I will not allow it to DEFEAT me. I will do whatever it takes to rein the beast of MS in. So, I will do yet another round of IV steroids even though the ugliness of the previous round is still very fresh in my memory. I will make the 3 hour drive each way to UCLA to see Dr. Giesser. Knowing full well that too many physicians have mentioned Novantrone to me in the past month and it's very likely Dr. Giesser at UCLA will also bring it up. If the CRAB's (Copaxone, Rebif, Avinox, Betaseron) don't seem to be effective for me anymore, I don't see much choice. I just know I'm dreading the next week....sticks for the IV, Steroid side effects...oh well. I have a 9 am appointment tomorrow with my MD. The journey continues......
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