TWELVE WEEKS

 

I can’t believe it has been since March that I wrote a blog.  It’s true that life got REALLY busy once school was over. We immediately left on a three-week trip to visit family in Romania and then once back, other summer activities took over.  Our daughter started theater camp and was in a play, and we also managed to fit in a last hurrah getaway with friends to Galena.  Galena is kind of a tradition now.  The first time we were there, three years ago, was in late June and right before my CIDP diagnosis.  I remember just wanting to get through that little vacation to have some good memories, because I was so scared at my continued spiral down, I was unsure where I would end up.  I had no idea what was wrong with me at that point. That diagnosis came about a week later.

 

Last year when we went, it was amazing to think how far I had come.  The infusions were keeping the disease at bay, and I was living a fairly normal life.  Taking time off every three weeks was a little disruptive, but I kept in mind how much worse it could be. Some people with CIDP are confined to wheelchairs and depend on others to get through the day. Some still deal with weakness and pain because the treatment they receive doesn’t really get the job done. But this year’s trip to Galena was AMAZING. Let me tell you why…..

 

The title of this blog is Twelve Weeks. Why twelve weeks? Because it has been that long since I have had an infusion!  My last one was at the end of May, before we took our trip. The doctor had given me the option to stop IVig and see how I did, since I had been on the oral meds for over a year, and they should be doing their job and handling the CIDP themselves.  I was a little nervous because international travelling can be VERY stressful, and stress can be a trigger for returning symptoms.  I decided my last one would be the one in May and we would see what happened.  Well, what happened was nothing. Glorious, beautiful nothing! I monitored and paid close attention to myself. Was it getting hard to go up stairs? Did I struggle opening things or reaching high? Were my legs starting to drag when I walked? None of those things happened. In the twelve weeks since that last infusion, I felt no difference at all. And that was a relief.

This was a fantastic turn of events, and I was extremely grateful.  I still have my port, I am not ready to go that far yet, so I have been in to have it flushed every six weeks.  I am not saying I ENJOYED my time at the hospital every three weeks, but I did get to know everyone there and it is actually kind of nice to pop in and see my infusion nurses. They are the best.  They are tickled at my progress. I am certainly happy I no longer have to schedule half days off at work every three weeks! No more pulling out a calendar every time we want to plan something to make sure it doesn’t conflict with my infusions.  It is a great feeling for sure.

There ARE a couple items that put a little damper on all this.  I am starting to think that the IVig also helped my LPP. Both are autoimmune diseases, so it made sense the Gammagard I was receiving also helped out my scalp and hair.  It was a little extra boost on top of the oral medicine I take also.  Now that I have stopped that, my scalp has started to flare up.  I was scared I was also losing hair again, but I don’t think that is the case.  Careful styling and a ton of hairspray seems to be keeping things where they should be.  I have not taken the step to start wearing wigs. I have three on standby should I decide to, but I am not there yet. 

The other bit of bad news is that we got the letter from the agency I had applied to concerning compensation for taking the vaccine, and their answer was a big fat NO. I honestly am not surprised. I have checked out so-called vaccine lawyers and not a one of them is taking on the COVID vaccine yet.  It was disappointing though.  I feel at some point in the future, maybe far in the future, a class action suit might tackle this. I was not looking to get rich and rake in a lot of cash, I just wanted my hospital bills to be reimbursed and my lost wages taken into account when I was unable to work. We were EXTREMELY fortunate to stay afloat financially through all that.  But it took a lot of money that we could have otherwise saved for our future.  Getting older is not cheap. 

 

But I digress…..

All in all, life is GOOD! I can’t thank you all enough for reading about my journey. I will still post things, just not sure how often.  CIDP will always be a part of my life. But right now, it is NOT front and center, and for that, I am grateful.