Facing Down Fear

I have signed up to take my license exam. It's the final step to becoming a fully fledged Marriage and Family Therapist. This is what I've worked so hard for over the last 10+ years. It's a very big deal and what was supposed to be the climax of my academic career. But it doesn't feel like that now.

It has been 11 months since I left my job because of my many chronic conditions. In the end it was the unrelenting migraines that were just too much for me to work through. This was my dream. To get my license and to help people and I'm still convinced I can do that in some capacity in the future. It won't look how I expected, but when does life ever work out how we plan?

Millions of people around the world have had their future plans completely derailed by Covid. Just because my cause is different doesn't make my situation any more special. Life is nothing if not unpredictable.

It has been very hard for me to study. Every question reminds me of my past work with clients and what I had to give up. I know that will fade the more that I study. I have five months before my test to work through my feelings and learn the questions. I've accomplished much harder tasks in the past.

I can almost hear the Helen Reddy song that my Mother would sing when I was little. It's very fitting to my situation. I don't always feel this way, but the strength of such mantras are helpful.

..."Oh yes, I am wise
But it's wisdom born of pain
Yes, I've paid the price
But look how much I gained
If I have to, I can do anything
I am strong
(Strong)
I am invincible
(Invincible)
I am woman"

What do I do?

I'm feeling worse every day. Both my muscle weakness and this horrid dizziness! Today I bought some Claritin as a last ditch effort to try and "solve" it myself. I think it's part of the myopathy, but I'm not against trying everything I can first. Literally the last thing I can think of is that it's allergies and my body is just having a two year old volcanic meltdown.

That would give anyone allergies, right?

What makes the dizziness better is sleep. What makes it worse is everything. My doctor is sending me to an ENT to rule out any kind of vestibular issue. Like I said... I'm open to anything. I even called Radiology today to see if they had any cancellations and could get me in for by brain MRI sooner than 11 days. Not that 11 days is that far off, but I seriously feel like each day is a big deal.

Remember The Hunger when David Bowie's character starts aging instantly? He finds Susan Sarandon, a specialist in aging, and tries to talk to her but she leaves him out in the waiting room. A few hours later when she comes back he's aged like another 40 years. Yeah... it feels like that. 

I know how you feel David. 

Along with the dizziness my muscles are getting worse. I feel a sense of urgency I haven't felt in a while. Each time I do something I wonder "Is this the last time I'll be able to do this?" I put something away in the garage today and randomly fell down. It was pretty scary.

So "what do I do?" What do I do when each day I feel worse? When I have to wait and wait for each doctors appointment and for answers that are few and far between? My insurance declined our appeal for the full genome sequencing that might have shown some helpful mutation. Or maybe not. Now we're waiting for new insurance to re-apply. So what do I do every day?

I get up. I do what I can. I skip what I can't. I ask for help when I need it. I keep calling doctors. 

SSDI is looking like it might be in the near future. 

I miss my work. I miss my old life. Today is just a "poor me" day and that's ok too. Tomorrow will be better. I hope. 

Disability, Dizziness and Doctors

It has been one week since I've been out on my three month medical disability leave from work. Luckily I've had my mother visiting to distract me, otherwise I think I would still be crying almost every day. I dream about my work and miss it constantly. Unlike a lot of people I loved my job and I loved working full time. I do know that I literally did everything I could to keep working. My body just couldn't manage it right now and that's ok.

I saw my doctor about my dizziness, headaches and foggy headedness. He ran some tests and found that my thyroid replacement medication was too high a dose. Today's my first day on a lower dose and we hope that's the cause. 

I also went to my eye doctor yesterday because OVERNIGHT my vision got worse, especially in my right eye. Everything bad seems to always start on the right side of my body. No idea why. He confirmed that in the eight months since I saw him both my eyes have gotten worse, but especially my right eye and especially close up. He said it could be from the Baclafan, or it could be from the myopathy. No way to really know. 

But hey! At least I don't have to take time off from work to make all these appointments. Right? Now I get to be a full time patient. 

Speaking of, I also get to schedule my next brain MRI today. I have the follow up from my brain surgery soon and my primary care doctor also wants to rule out anything scary going on causing the dizziness. I appreciate his attention to detail. 

Lastly my husband and I have been talking about getting a wheelchair van early next year. Luckily there are a lot of options where we live, including a lease. The gas milage on them is terrible, but it would give me a lot more freedom (like all my other tools). I want my life to stay as big as it can. Using my big chair is not only more comfortable, but it saves me a lot of energy over other devices, which means I can be out more doing the things I love!

Stay tuned for car shopping. Which is more fun than a brain MRI. 

Another Big Decision Made

I've been having increased dizziness and headaches. Over the last three months they have been getting stronger and the dizziness more debilitating. My original work plan was to go down to just two days a week doing telehealth from my home. This Tuesday was supposed to be my last day in my office. Little did I know when I left that morning that it would be my last day period (at least for a while). 

I really thought I could manage to still work two 10hr days a week and just recover the rest of the time. But as anyone with chronic health conditions knows, sometimes our bodies have other plans. It was at about 10AM that I realized this "new plan" wasn't going to work. I felt exhausted, was dizzy and had a headache so bad that I couldn't focus on what I was doing. 

I also realized that I had been trying to "keep it together" for my clients, but really cancelling them as much as I had to with little to no warning and rescheduling was likely harder on them (and our support staff) than just taking a three month disability leave.

So I pulled the trigger. I went home, cried my eyes out from frustration, guilt, anger and just not feeling good. My husband come home from work mid-day to comfort me (that was after I called him from my office bawling my eyes out over having to go home). After that I notified everyone important at my agency that I had to immediately go on a three month disability leave. I got a few "get well soon" responses, but most of it was just radio silence.

Silence is a horrible feeling to be greeted with when I tried as hard as I could to just keep pushing and to help as many people as possible. Pushing myself was what I did all day every day that I worked (sometimes even at home). But I just can't push myself anymore. My body has had the final say and it's "NOPE!"

Now what's next?
Applying for State Disability has taken a lot of spoons. It's very confusing and I don't know what I'd have done without help from a disabled friend of mine. My student loans have also been frozen because I can't work right now. So that's two big things off my plate. 

I'm doing small productive things, but mostly resting. And of course attending the never ending medical appointments. I have one Monday with my PCP to talk about the dizziness. He gave me Scopolamine transdermal patches to try, but they did nothing. I picked up some Dimenhydrinate (Dramamine) 50mg today and will try taking 100mg tomorrow to see if it helps at all. 

I'm still processing this big change too. No more office. No more helping clients (right now). No more early work days. No more dressing up. It feels like it did when I got my first rollator or wheelchair. A big step into disability.