Caregiver Challenges

As a caregiver, my husband normally qualifies for sainthood. He goes above and beyond when it comes to taking care of the house, taking care of the kids, and taking care of me. But he reached his “had it” point this week. He has needed help, but since I haven’t been doing well when asked, he hasn’t gotten the help from me, and it was all building up until he felt overburdened. And since so many MS symptoms are invisible, he just couldn’t reconcile my comments about not feeling well with what he saw. For him, that situation was incredibly frustrating. There were harsh words and tears on both sides, since we couldn’t see a middle ground.

Then I had a neurology appointment this morning, which confirmed that there is reasons to suspect that I’ve had a relapse causing the problems I’ve been experiencing recently. Normally, my neurology appointments are quick, followed up with a quick blood draw for some labwork and making my next neuro appointment in 3 months. Not so easy today. Instead of breezing through the tests, I had to repeat a few to see whether I could do better if I really, really concentrated. The discussion of how I’ve been doing since the last appointment included a lot more in-depth questions regarding walking, number of falls, bladder function, vertigo, etc. I had to go into a lot more detail than usual.

Then it was time for next steps. The self-proclaimed human pharmacy was given another bottle to add to the overflowing medicine cabinet. Baclofen is a drug commonly used by MS patients and others experiencing spinal cord problems who need to address spasticity. So that’s three more pills a day to add to the already extensive list of pharmacology:

– 7 am – Ampyra, Baclofen, Lexapro

– Breakfast – Multivitamin, Calcium + D, Niacin, Cranberry, Fish Oil

– 11am – Baclofen

– 2 pm – Mirapex

– 3 pm – Baclofen

– 4 pm – Ibuprofen on Rebif days

– 7 pm – Ampyra, Mirapex, Calcium + D, (and can’t forget Rebif 3 days a week)

In case you’re wondering, yes, I go to a Pharmacy with a rewards program. Gotta get something back out of this, don’t you agree?

So normally at check out we’re just talking about setting up my next appointment. We did that, but also scheduled time with both the physical therapist and the MRI tube next week. I think my therapist would be pleased to know I’m looking forward to seeing him a lot more than that blasted tube. At least I only have a few days to dread the tube. As a claustrophobe, I am glad that there is such massive research supporting the diagnostic benefits of MRI and the usefulness of this technology in the treatment of MS, or it would really piss me off to get in the stupid thing. Then again, the IV valium helps to make it a more palatable situation, and it sure counts as a good excuse for not cooking that night.

I’m still not done today though. In addition to the usual labwork, it’s time to check for antibodies. Has my body decided that the interferon I jab into my body three times a week isn’t doing the trick anymore? We checked last year, and the answer was no, this drug is still a good solution for me. Given the suspected relapse, it’s time to ask the question again. I just hope I don’t have to jump through all of the insurance hoops this time like I did last year. They originally rejected my coverage claim, which had me freaking out at the prospect of shelling out $1000 bucks for the test, but I successfully appealed.

I also get to look forward to scheduling 5 days of solumedrol infusion. That may sound bad, but it’s actually one of my favored parts of treatment. Sure, I get jabbed with IV needles 5 straight days, but then I have an excuse to veg out in a heated massage chair for an hour. I usually take advantage of the chance to catch up on a good book. Plus the IV nurses are awesome and do what they can to make the situation as tolerable as it can be. And the other infusion inmates are a quite friendly bunch.

Then all was left was giving the details to the loved ones. Had to call Mom, since she is my friendly chauffeur on MRI day (since Valium and operating heavy machinery don’t mix….you can get into heavy machinery, just not drive it). I had texted hubby about the disappointing results, but he called to get a breakdown once the appointment was done.

There’s nothing like a less desirable diagnosis to bridge the gap between a frustrated patient and a frustrated caregiver. He tenderly explained to me that when he sees me, he doesn’t see a disease, he sees the girl in the sexy red dress that he fell in love with. My heart can’t help but ache for him – if I have a hard time dealing with this unpredictable disease, how tough is it for him to deal with my having such a sneaky and volatile condition? I know I struggle with not being identified by my disease and minimizing the limitations it places upon me, so how can I criticize him for doing the same? Our poor caregivers have to walk the fine line of helping us while we need them yet giving us the room we need to do what we can for ourselves. I know it’s confusing for me to balance what I can do vs. where I need assistance, so it makes sense that he struggles with the same challenges. The challenge he’s struggling with is helping where needed while still thinking of me as a person first, not a disease.