Splendid Progress
I’ve made some delightful progress in the last couple of weeks!
I’ve done four cycles of 72 hour mimicked-fasting since the end of April and I had another MRI yesterday. I’ll get the results at the end of this week. The question is, is my immune system still attacking and destroying my brain and spinal cord?
My last blood work showed my immune system has calmed down, which is good progress. The MRI will show if I’ve suffered any more damage since March.
I’m feeling so much better now. If I have new lesions since my last MRI, they aren’t causing any symptoms. I’ve been working out 5 days a week for the last couple weeks and my strength is slowly coming back. My balance is improving and I’m even getting a little faster on the treadmill. Every day brings more progress on a physical level.
Today I did sprints at 4.8 mph, which is the fastest I’ve been able to move since October. I didn’t get the foot drop or have to hang on to the handrails. That’s huge progress!
I did want to throw up and die, but that’s mostly because I was disabled and sedentary for many months.
I think you de-condition pretty quick once you hit 40. MS-wise? I feel like this flare-up is finally over.
The meds they (the doctors I haven’t met in person) want me to go on are a super affordable 28,000 a year. Thanks to the client who screwed me over last year, I made very little money in 2019. With the Covid Cancellation of every special event contract I had, I have no foreseeable income for 2020. I had to cancel our benefits months ago because I couldn’t afford them. I also can’t afford the medications I’m currently on anymore, so I’ve gone off everything except the Pill.
Can’t afford any damn babies, don’t want any damn babies.
I have an open mind for when I talk to the neurologist on Friday, because I love expert opinions from experts. But I’m also learning to make decisions on what I feel is best for me, regardless how other people might feel about it. I have a lot of respect for experts, especially highly-educated ones, but at the end of the day I’m the expert on me and my life.
Based on the information I have right now, I don’t think I’m going to go on the MS meds at this point. Unless there’s something glaring on the radiology report, I’d like to see if we can defer meds for awhile. I’m improving now at an amazing rate, I’d even say I feel 95% back to normal. I’ve made some crucial lifestyle changes that I can maintain, and providing that I don’t develop new or worsening symptoms, I’d rather just follow up with the clinic regularly and get another MRI next year to monitor the disease, then reevaluate.
I talked about it with my husband and a couple of close friends who I trust to give it to me straight.
You know those friends who are totally supportive of your good ideas, but will also lovingly call you out and tell you to smarten up if you’re going off the rails? Those friends.
I don’t want to go on the meds right now. I feel strongly that I don’t want to, nor do I need to. But after being gas-lighted and denigrated for so long about my judgment, my intelligence, my feelings, and my decisions, I have to work through a few things. I also check in with those I trust and those who have a legitimate vested interest in the outcomes of my decisions.
Firstly, I struggle to trust my own perception of reality and my judgment. Can I trust my gut instinct that this flare up is over and if I maintain my lifestyle changes, I won’t have another one? Or am I delusional because I don’t want to admit I have a disease that is ruining my central nervous system?
Ultimately, I decided that I’m not in denial about this disease.
I have Multiple Sclerosis. That is an undeniable medical fact, confirmed by MRI and several medical experts.
But instinctively, I feel my prognosis is excellent if I keep my stress managed and maintain my healthy lifestyle. Two of my trusted doctors agree with me, and I trust that they also would tell me I’m making bad decisions.
The next hurdle I had to overcome was the anxiety that if I tell these new MS experts (these are the neurologists I haven’t met in person yet, thanks to Covid) that I just want to follow-up with them as they recommend but hold off on starting meds right now, they’ll be mad. They’ll think I’m an idiot. Or they’ll think I’m crazy. They’ll label me an attention seeker who wants to be disbled. They might even speak to me harshly or raise their voice and tell me that I’m stupid and a waste of their time.
Breathe, Stephani.
I’ve been doing so well with managing my anxiety lately, even off my daily medication, and I’m feeling much less reactive. I still kick into anxiety high-gear occasionally but I’m getting better and quicker about getting it under control so I can think logically.
It’s not really likely that they’d be angry that I don’t want to go on meds immediately because at the end of the day, it’s not about them. It’s not likely they’d be visibly upset, or think that I’m a complete idiot.
But let’s say they do get visibly angry and tell me I’m an idiot.
(This is where I actually let myself catastrophize. Anxiety makes it really easy to imagine worst-case scenarios so let’s do it!)
The neurologist loses their temper that I don’t want to go on meds right now. They tell me I’m stupid, ask what’s wrong with me, and they can’t stand me as a patient. In fact, they don’t even want to see me again because why should they, if I’m not going to do what I’m told?
That’s my cPTSD talking, obviously. I acknowledge it. Then I review the facts:
The doctors have been nothing but knowledgeable, professional, and kind. They’ve even repeatedly reminded me that I’m completely in control and everything is ultimately my decision. Yes, a few times I experienced obnoxious, rude, and unprofessional medical professionals. They exist. So far, none of the doctors I see now have given any indication they’re part of that group.
If they did decide I’m a total idiot….then what happens?
Nothing. Literally nothing happens.
The world doesn’t end, the stars don’t fall from the sky, my heart doesn’t break, my disease doesn’t get worse because they don’t like me, my husband doesn’t leave me. It actually doesn’t diminish my value as a human being, and it doesn’t actually affect my life in anyway.
Weird how an initial, knee-jerk thought can send me into stress overdrive, but once I start unpacking the catastrophizing, I realize it’s all very unlikely to even occur. Even if whatever worst case scenario I’ve imagined comes to pass, and that’s happened a few times in my life, it’s really not going to be ‘catastrophic’ at all.
So worst case scenario? The neurologist hates my guts and thinks I’m stupid for not wanting to take very expensive medications right away.
So what?
So nothing, that’s what. Emotional shrug.
I’m getting better and it seems ridiculous to me, that if I could even come up with 28,000 to pay for the MS medication, that I would. So I should be broke as hell so I can take pills every day to sit on the couch? Great, I’m not disabled but how would I know? All we’d be able to afford is sitting on the couch watching television. No travelling, no trips, no excursions to the mountains, no nothing. Just the rest of my life, housebound and broke. But, I probably wouldn’t get any other symptoms!
That doesn’t sound like much of a life. At least, not a life I’m interested in living.
A friend of mine said that I can get the drug company to pay for a new benefit plan (one I looked into and can’t afford either) and the meds so I’d essentially be treated for free. If that’s a possibility, I’ll definitely consider it providing the medication doesn’t come with side effects that are worse than what I live with now. Other than that, I’m not really interested in this rigmarole.
Frankly, I’d like to just focus on continuing to rebuild my life.
In many ways, MS isn’t even the worst thing that happened in the past year and a half, or the hardest thing I have to deal with.
Do I credit the health care system with any of my recovery? Not an iota. I’m grateful to my amazing family doctor for recommending yoga and a strict anti-allergen diet and getting me in to see a neurologist so quickly. But other than that?
The MRIs haven’t done anything to benefit my daily life, they’re diagnostic. The doctors haven’t prescribed me medications or treatments that sped my recovery or alleviated my symptoms. I was the one who took the initiative to visit a physiotherapist for help with the foot drop, a service that I chose to pay for using my grocery budget so there was a lot of ramen on the menu that month.
Now, 8 months later, as I’m starting to feel normal again, they want to put me on a medication that won’t make me better now. No no, this medication just reduces that chance that I’ll develop more symptoms in the future. But they can’t guarantee that I’d even develop more symptoms even if I don’t take the meds.
I guess I have an attitude about it, but I kind of feel like the health care system didn’t do much to help me get better the last 8 months, now I’m much better, and now I don’t want any more ‘help’, thanks.
I do my best work when I’m left alone.
I’m going to keep an open mind as to what the neurologist says on Friday because I’m always up for gathering more information. After all, they’re the medical experts with a lot of education and training in this field and I want as much information as I can get to help me make decisions. But I also need to do make decisions that I think are best for me and my life.
I’m sure there’s a middle ground somewhere!
