One Step, One Day at a Time
Have you ever been right in the middle of things settling down, feeling better when suddenly, bam, your world is completely turned upside down? I’m right there with you! That’s how I felt following my recent visit at John Hopkins.
I knew things were changing and slowing down, but I was hardly prepared to hear what was coming next. Here’s his brief summary:
• Rebif (DMD): My WBC’s were beyond low and quickly depleting, “Let’s try decreasing your Rebif to half dose (22 mcgs) and see if this will help. If not, we’ll look at other options.” I couldn’t even ask what that meant. By the way, “You may want to consider adding Simvastatin to your therapy. Studies have shown this may slow down brain atrophy.” Perfect…
• Swelling of the Feet: This is a newer, persistent symptom for me. Fluids are getting stuck at the base of my feet and ankles (“message not reaching to tell the fluid to keep on moving”). He provided a script for compression socks hoping this helps so I can exercise again. He had to hear, several times, how much I value the importance of a strong body to fight this!
• Great Toe Curl: Another newer symptom. Who would have thought spasticity of the big toe. Huh? I’m scheduled to receive a Phenol injection to release and control this spasticity. I had the same injection treatment previously in my calf. Definitely helps to walk when your toes are straight…lol!
One slight detour, right? Makes me stop, think and questions myself. How am I going to handle this detour? Where am I being re-routed to? Are these detours God’s way of trying to tell me something? Yes? No? What? What?
Life’s detours and roadblocks require processing and adjusting. Extremely necessary and healthy to do. Important to remember and trust God is allowing all circumstances in my life for good, even though I may not always understand or agree. One thing remains true and certain, He will be right by my side, providing His strength, His love and His perseverance to see me through. For that, I can smile.
What detours do you face today? What’s standing in the way of God’s best for you? With Him, there’s no need to fear or look back, focusing only on tomorrow, one step, one day at a time!
“Count Your Blessings”
- Posted in: Living with MS
- Tagged: Detours, DMD, God, MS (Multiple Sclerosis), One Step One Day at a Time, Rebif, Symptoms, Trust
SO I HAVE MS...now what? 
Cath I’m so sorry to hear things are giving you trouble. I keep you in my prayers everyday❤️. Keep your chin up and please call if you need anything. Xoxo Chris
Thank you for your kind comments and prayers GF. I’ve processed and accepted, time to move forward to do what I can to be optimal…some things just don’t ever change! 🙂
My detour has been ongoing for this past year. It’s been tough going and it is hard to just let things be or go as they will… as there is nothing I can do to speed things up…Totally up to God the timing and the way…
I hope for you that your ‘detours’ are short-lived Catherine .. Diane
Thank you for your comment Diane. We both know, oh so well the detours, if you will, that this disease may or may not bring. I completely agree with God’s timing in all things…sometimes, just wish He’d hurry up a little! 🙂 Feel well friend!
We’re all rooting for you. Please, what does WBC stand for? Why decrease Rebif? Wouldn’t increase in that or stronger meds be more effective?
Thank you Jan! WBC stands for White Blood Cells. All interferons (like Rebif) tend to lower you WBCs. Mine have been on the lower-normal range for years and now steadily continue to drop below normal. I was on the highest dose of Rebif and will see if the half dose helps with lab work in a couple months. I completely agree with you high dose high frequency regimen. Rebif has controlled my MS for nearly 12 years now. My MRIs have shown no new lesions. Priceless. I’ve had no relapses for the past three years. Considering these facts and symptoms, they feel I am progressing, the natural course of the disease. BUT, I must remain proactive and be prepared for repair meds…they’re a coming! Your so sweet with you words and Q’s! 🙂 Make it a great day!
I do understand your frustration with the situation. I hope the Rx adjustments help. You are very good at keeping your chin up – so I’ve been using you as an inspiration lately.
We’re in this together! Doing what we can to be optimal, right!?! I am so confident for current trials and options to try in the future! How are you doing with your new med? I think and pray for you often friend! Thank you for your words of encouragement! Enjoy your day! 🙂
So far, so good. The nausea seems to be calming down finally – though I count the 13lbs lost in the meantime as not a bad thing. Having some warm dry weather the last couple of days (finally!) has helped with the pain a lot. I hope it continues, ’cause there is a lot that I would like to start doing again. It’s been a long winter of sitting around on my butt. 🙂
You crack me up! 🙂 Glad the weather is clearing and you’re beginning to feel better. There’s the bonus of new meds, instant diet! If you’re anything like me, I find the outdoors so therapeutic. Love being in my flower beds! Hope you continue to feel better each and every day!
I also get swollen feet and ankles. What helps me the most is having them elevated and massaged hard. I have a bed that allows me to sleep with my feet elevated.
Girl after my own heart! Sounds like you have these symptoms well managed! Thank you for your tips! Your bed sounds like heaven! Make it a great day GF! 🙂
You’re in my thoughts Catherine. Hope your detour is short and that things will get better soon x Mimmi
Thank you for your words of encouragement! Have a great day! 🙂
I am so proud of you…this is a very Godly post! And what else can be as important?
Good job!
Steve Pejay
Thank you for your encouragement! 🙂
I will always be happy to help you with encouragement, advice, bible study, prayers, or just as an “ear” if you’d like someone to talk to.
Enjoy your weekend…(go to church worship Sunday)!
Steve 🙂
Thank you 🙂
You are welcome, Catherine!
Have a wonderful day today. Enjoy the things and people around you…
Steve 🙂
Thank you Steve. You do the same! 🙂
I have done pretty well today! I enjoy meeting new readers such as yourself!
Hope you get the chance to stop in again…
Steve
🙂 Will do Steve!
Hope to talk with you later. If you’d like to just “talk,” I am happy to lend an ear. I know we don’t know each other, but that’s how every friendship starts out!
Steve 🙂
Sorry about the progression, Catherine. One day at a time, sister. I have bad ankle/foot swelling too, especially if I don’t keep them elevated. Kick back and put your feet up.
Thank you for stopping by Bill. I appreciate your kind words and recommendation. Time to kick back and elevate those feet! Hope your computer is treating you well! Have a great day friend.
Catherine, while I don’t have MS, pernicious anemia, my rare progressive neurodegenerative disorder of oliviopontocerebellar ataxia (even my neurologist had to look that rare condition up. It was diagnosed at age 38 by a gerontologist) and mast cell (immune system) activation disease displays many of the symptoms of MS ranging from fatigue to affecting mobility.
We who deal with chronic conditions either as those who suffer from them or our families who are with us through them, truly understand that you take one day at a time. The energy you have this morning you may not have this afternoon.
Some days I have to be satisfied with accomplishing one thing. It’s really frustrating because I want to do so much more.
Each day we who have chronic conditions affecting our energy have to swallow what can be a a bitter pill. Your mind says, ” Let’s do a lot today. Your body says, “You’re kidding me, right?”
Coming to an acceptance of what you can and can’t do can be a painful journey.
I am comforted today by that thought from C.S. Lewis. “Hardships often prepare ordinary people for an extraordinary journey.”
Here’s my life story you can read in under five minutes to get to know more about me.
Praying for you and your family in your journey.
Kevin
Thank you for your kind message Kevin! I look forward to reading more about your story! Your words of encouragement are so helpful to many…that includes me. Chronic illnesses, of all types, are challenging. Focusing on Him and the good things in life allow us to face our challenges each and every day! One of the best things with blogging, the ability to share, encourage and support. God’s plan hard at work!
Thank you for your prayers. Blessings to you and your beloved! 🙂
Catherine
i am not sure what happened but your blog posts haven’t been coming to my reader so I had missed a lot of posts, I am not reading them backwards I just realized… so I read todays post before this one. your positive attitude and joyfulness that you show in the face of these things amazes me and I think you are very inspiring.
Meant *now reading them backwards lol
I have the same experience but glad you were able to find your way back! Your comments are very kind. Thank you! We all take one day at a time enjoying our many blessings along the way! Have a great day T!
I have always said there should be another option other than LIKE. Maybe a PRAYING FOR YOU one perhaps¿
😉
But just wanted to say that you are an inspiration♡
You are so sweet! Thank you for your encouragement and prayers! Have a wonderful day!