Life as we know it…
Back to life as we know it. Unpacked our bags, began the wash (amazing the amount of wash two people can generate) and prepped for the anticipated arrival of my dear friend. We would be heading south (again) to see my neurologist at John Hopkins bright and early the following day. This visit was to discuss my current MS “Now What” issues. So grateful for her willingness to accompany me to appointments. After all, hubby can’t take off for every appointment, can he? GF had her recorder in hand so he wouldn’t miss a thing! A win-win for us all! 🙂
Time to hit the road. We actually made good timing and arrived earlier than expected. The hustle and bustle of the city wasn’t that bad! We checked in and amazingly, the doctor took us right back! Now that’s what I’m talking about!
As you can imagine, I was a bit apprehensive, alright, scared about what she might say. I felt confident with my understanding of RRMS (Relapsing Remitting MS) but have so much to learn about the next stage, SPMS (Secondary Progressing MS). It’s just not talked about much by medical professionals. To say I felt helpless, was an understatement. Factor in the overwhelming feeling of not having any control, at all, was even worse. Type A wrapped way too tight here could not even begin to address my questions or concerns. The internet can be a great source of information, but with the unpredictability of this disease, effecting each patient differently, makes it difficult to find good, clear information. Can’t you appreciate where I’m coming from?
Of course, I had my list of questions written down, current labs, MRI CDs, ready to roll. With permission, we cued the recorder. For nearly one hour, we had a very straight-forward conversation. I know many physicians like to paint a beautiful rainbow to keep patients upbeat and motivated. For me, I prefer the facts – all of them – the good, the bad and the sometimes down right ugly. She was able to do so. For that, I was grateful.
It was a known fact that I’ve been struggling with below normal WBCs (white blood cells) for over a year now. Factor in my rather odd, non-healing infected abdomen and foot over the last six months, current WBC labs revealed my levels we dropping again. I have minimal infection fighting cells left. She felt I should switch to another drug. I had a feeling that would be the case, but I never expected her to suggest Copaxone. “Copaxone! Why?” I exclaimed. She replied, “This is the only DMD (of the 13 available) that does not attack WBCs.” Considering the distance to her office, I reluctantly signed the necessary paperwork to begin conversion but advised her I wanted to discuss with my husband first and would call with our decision.
We proceeded to discuss my current symptoms: weakness, numbness of hand and foot, drop foot despite brace, circulation issues, and my noted atrophy of my leg muscles. When you’re in tune to your body, these symptoms are easy to recognize. No doubt, some of these are due to progression, but I want to try to remain one step ahead of this disease. That’s it! I need to be educated on what I can do, from the experts, to achieve just that. She understood where I was coming from. She definitely sensed my frustration, anger, helplessness, all of the emotions to be expected.
Her Plan of Action:
- Change DMD to Copaxone, remaining protected
- See Hematologist for WBC repair
- MRI Brain and Lab Work (baselines prior to starting Copaxone)
- Physical Therapy – Eval for E-stim, strengthening exercises and BalanceWear Vest adjustment
Always a sceptic, I immediately began to research DMD side effects on WBCs upon arriving home. She was indeed correct. I was all set for hubby to listen to the recorded visit and discuss her recommendations. He had no questions and without a doubt said, “Time to change!” I know this is not easy on him either. I’m forever grateful for his love and support, his ability to see things clearer than me sometimes, and for knowing he has my back, wanting nothing but the best for me, makes all of this worth the effort. Despite my occasional hissy fits, I won’t disappointment him! I will make him proud!
This week brings another round of appointments. More questions and decisions to be made. What provides my strength through this all? Remembering the Lord is right by my side, the love and strength I receive from my husband daily, the care and concern from family and dear friends and the ray of sunshine felt from the gentle smile of our granddaughter while she slept, all inspiring me to Count My Blessings each and every day!
“Count Your Blessings”