Met my herd!

Did you know that a group of zebra are called a "Dazzle?" So technically I should say that I "FOUND MY DAZZLE!!!"

Where? Well, aside from the fantastic folks in my MD Mixed Diagnosis Support Group, I've also found a ton of them on Instagram. I've only been on Instagram for two weeks, but I was shocked by the number of spoonie fellow wheelers there.


Finding people going through similar challenges and sharing about it openly has been a big boost for my mood and self esteem. 

Because Instagram is owned by Facebook I was hesitant to join. I don't like supporting companies like Facebook who go against my values and ethics, but in this case the pluses outweigh the minuses for me.

Through Instagram I also found this company called "Aware". There's a lot of companies who make jewelry for causes donating a portion to the cause you choose, but this one had a lot of invisible illnesses, including this fantastic ZEBRA necklace for "Rare Diseases". I took out an advance on my May fun money to get it today.

AND what a coincidence? I'm wearing this black and white striped dress my Mama bought me yesterday. Hahah! 

Fellow zebras. 
I encourage you to go find your Dazzle.

(I received no kick back or incentive with this blog.)

Disability 6 months in

You'd think after being off of work for six months that I'd be more adjusted and used to it then I am. But I'm not. I was recently approved to take my licensure exam, which when I pass, will be the pinnacle of what I went to school for. That's IF I can pass. Even if I can't actually work in this field again it's important to me personally to achieve that goal.

My symptoms are still worsening and my muscle weakness seems to be getting a little worse. It's mostly that constant pain that's worse. I always feel like I've been stretched on a medieval torture rack. 

Then there's the bad dreams. I have a recurring dream where I'm starting off walking fine, but then the pain sets in and I can no longer walk. I'm stranded somewhere with something I'm trying to do usually on my belly crawling. It's really stressful.

I also still think about my clients and my job that I had to leave behind. I don't feel like I have a "new life" or any kind of a "new normal" at all. Especially not with the world in chaos right now and trying to keep healthy. I feel stressed, upset and just heavy. Emotionally and physically. 

So rather than moan any more here's what I'm doing right now that helps me.

Ok, so that was going to be it... followed by another list of happy helpful things. But then I realized:
1) I'm not "moaning" I'm sharing important feelings.
2) It's my blog and I can write about whatever the f*@& I feel like.
3) I have no idea where this pressure to "not complain" on my own blog is coming from, but it's worth looking into.
4) I have a right to my own feelings.
5) Why am I underplaying things that are a big deal? Trying to brush them off? For me? For others? It IS a big deal and that's ok.
6) Where the F*$% did that come from anyway?
7) Yes I am disabled. Yes it sucks. It's ok that for now there's a period at the end of that statement.
8) Everything I do hurts me. It's just a matter of how much and is it worth it. I know I'm not alone in that, but sometimes it feels like I am.
9) Being me right now is exhausting. 
10) I hope my doctor gets back to me so we can try and find something else that will help.

(I'm not in the mood for pictures today, and that's ok too.)

Permanent disability denial

Well... THAT was fast!
It turns out I don't qualify for any form of disability other than State Temporary Disability. The very nice representative for Federal Disability explained that there are two ways to qualify for "permanent disability" and two forms of it (so that's three kinds total! WHAAA!?!) 

1. You have worked pretty much continuously for pay for the last 10 years. I think that number fluctuates based on your age. For me it was 10 years.
2. You and your partner (if you legally have one) are legally low income (including your assets like car, home, etc.)

Taking a dog "walk" (roll) break

He told us that unfair as it is being in school or a full time parent for the last 10 years doesn't count for anything according to the government. You need to have been paying into the social security system to be able to draw on it in any way before retirement age.

Also your partner working for 10 years doesn't count for anything if you're still together. But their income and assets count against you for the second type. 

I told my husband I don't know why they even call it "Disability" if your disability isn't the first thing they consider? Bottom line, the American government doesn't part with money easily (unless you're a corporate investor in the political system?) It's very messed up.

Overall I'd recommend applying over the phone. Just skip the online process completely. Also call your local office, not their main number. It's much faster to get through. Even if you think you may not qualify it's still worth applying because you never know. Same for temporary disability.

I'm grateful to a friend in my Muscular Dystrophy support group for encouraging me to apply for temporary disability even before I knew I would need it. I was very resistant when he first brought it up, but I did end up needing it and it has been a real life saver.

My puppy was helpful when I got stressed and sad.

So, I'm still unable to work and my benefits will max out soon. That means all the financial burden and pressure is on my husband, which I HATE! It really upsets me to not be able to make any money right now and YES! I feel like even more of a burden, which is an awful feeling.

He tells me all the time that I'm not. And logically my head knows it too. But you can feel much differently about something even if you know the situation is a contradiction. I FEEEEEEEEEEL like a burden period.

Applying for permanent disability

I've been working on applying for permanent disability since November 2019. If you're keeping track, that's just shy of six months. 

At first their algorithm instantly denied me. Then I had 60 days to contest the denial, which I never did. I didn't contest it because I was busy trying to get copies of my chart, medical records and lab results. That took four months. I also felt determined I could do it all by myself. Hahaha!

My Mama bought me this fantastic book (we love Nolo Press) and offered to help. Again and again. Finally I agreed that it would be better to get some help with his daunting process. Especially given my memory issues and the fact that OH YEAH! She used to do this kind of legal stuff for a living when I was young. 

So after two hours on hold we were finally able to find information about making a late contest and filing all over again. Filing over the phone is the option I wish I would have gone with the first time. It's always better to talk to a real person, especially if your case is complex like mine is.

The woman on the phone was great and got me an interview for today. In 90 minutes to be exact. I authorized mom to speak on my behalf and we spent the rest of yesterday tweaking the information I have compiled and readying ourselves for today.

I'm nervous. If I had been working full time for the last 10 years I would be much less so. But I only worked for money the last year. That could be an issue. We'll see!

Wish me luck. I'm sure this will be a long process.

I'm the zebra

I remember early on at a medical appointment, the forgettable doctor told me the following. "We have a saying in the medical industry that if you hear the sound of hoofs look for horses, not zebras". She explained that what I was experiencing was common and not likely to be something rare. She was dead wrong.

I later looked up her strange "zebra" analogy to find it is taught in medical school in regards to "a very unlikely diagnostic possibility". I'm not a doctor, but do have a masters degree in my field of practice, mental health. What I was trained was to "consider all possibilities, listen to your client and rule nothing out". So why do we treat the mind any different than the body? Shouldn't doctors be looking for horses AND zebras? And are zebras really so rare after all? I mean... if you're on an African plain wouldn't you be shocked to see a horse instead of a zebra? 

To put that in medical terms. Maybe doctors aren't finding zebras because they're too busy looking for horses. Seriously. The example of the "unlikely diagnosis" is "When someone develops a cough, a virus or infection is a logical cause and tuberculosis is the zebra". As someone who has been treated for TB I find that to be a bad example. How about testing for all of it?

I mean how can a middle class Caucasian person living in a "safe" small city with good food and clean air not only contract tuberculosis, but also have Rheumatoid Arthritis, survive a brain tumor AND have a very rare muscle disease? (Yes, I'm talking about myself here.) I don't think I'm the only zebra at this watering hole. 

Doctors would be wise to rule nothing out and look for horses AND zebras. To take their patients concerns (and not "complaints" as another doctor of mine called them) seriously. And to admit when a horse really is a zebra. Come to think of it... I'm not a zebra after all. I'm a freaking zebra, unicorn, pegasus that poops rainbows! 

Botox Trial Begins

Yesterday was my first round of 32 shots to see if it will help my migraine symptoms. Specifically I'm hoping to get relief from my constant dizziness, fatigue and headaches. The shots were all around the crown of my head and two in each shoulder. They stung a bit, but it wasn't awful (though I also have many tattoos.)

I was very concerned about the potential side effects listed on the Botox site, but my neurologist is a migraine specialist and does these all the time. She assured me that they have to list every side effect for every use, not just for migraines. The side effects sound scary... but I'm not having the shots in my chest so I should be fine. So far (24hrs later) I've had a headache, minor soreness, tenderness and stinging. 

No washing your hair or rubbing your head for 24hrs, then when you do wash, do it gently. I made the mistake of towel drying my hair after. Ouch! Don't do that next time. Lesson learned.

My doctor said it could work as fast as one week, or take as long as six months. I will go back in three months to do the whole thing all over again. 

I told my husband on the way home yesterday that I really admire my optimistic nature. Even after everything I've been through and only about 15% of things I try helping, I remain hopeful. Hopeful enough to get 32 pokes in the head, cross my fingers and wish it will help.

I can't tell!!!

One of the hardest things for me about having a chronic, progressive condition is the lack of stability and predictability. I honestly can't tell what I'll be able to do from one day to the next. I know I'm far from alone with that feeling of instability. But that's no consolation.

Sometimes I feel like I honestly can't walk at all. Sometimes I feel ok to garden for an hour (though I always pay for it later). Sometimes I think it's only a matter of time before I'm hooked up to a ventilator. Other times I feel my body has really stabilized. The constant uncertainty is stressful and hard on not just me. 

My family can only go by what they see and what I tell them. Of course I don't give them a constant play by play of my body. "Now I have a cramp in my left calf, now my lower back is spasming, now my right eye is twitching..." They aren't me so they can't possibly know. Or as much as they try, understand. It's terrifying. I feel a constant undercurrent of panic no matter how mindful I try to be. "Is this the last day I can walk? Is this the last time I'll be able to do this?" These are things I think about daily. 

If even I can't tell what's going on in my body from one day to the next how could my family? If I don't know what I need or what's helpful, how could they? I do know that it helps me to talk and share the important things going on with me. Including my fears.

I'm very lucky in that when I share with my family, they take it seriously. I still remember talking to my husband about needing a rollator. It was a very hard conversation, but needed. I ALWAYS feel heard, respected and helped by my entire family. Which when I can't tell what's going on with my body is just what I need. 

I've learned what doesn't work for me is pushing myself too hard just in case I won't be able to do something in the future. It's what I have a tendency to do and my body doesn't thank me for it. I need to take it slow and cross each bridge as I come to them.

Taking Care

These are crazy times. Everything in the world is changing so fast, on every level that it's hard to keep up. People are dying in record numbers and our economy has completely crumbled. It's easy to get caught up in the tsunami of panic and fear that has brought us all to our knees. 

I'm one of the very lucky few. I feel like my town is a bubble, isolated from what the rest of the world is experiencing. It's spring and people are out on their bikes, walking their dogs, singing in the streets (while keeping safe distance from each other). I have plenty of food and fresh clean water. Everyone I love is safe and healthy. 

BUT... I also know all that can change in an instant. So everyone needs to take care. Here's what my family and I are doing.

1.  Staying inside as much as we can
2. Washing our hands constantly and thoroughly
3. Washing clothes we wear outside right away
4. Disinfecting commonly used things daily (door nobs, phone, toilet handle...)
5. Keeping our distance from others when we do go out (dog walking and food shopping only)
6. Taking vitamin C daily
7. Eating healthy foods (veggies, fruits, foods high in vitamin C and protein)
   
8. Getting lots of rest
9. Knowing the difference between allergies and CV symptoms
10. Keeping in touch with friends and family through Zoom calls, texts and e-mail
11. Not reading too much news
12. No news before sleep
13. Getting physical activity every day
14. Keeping routines like meal planning, night TV...
15. Talking openly about our feelings with each other
16. Checking in with neighbors regularly (we all come out and make noise at 7PM)
17. Helping others when we can 
18. Accepting help from others (like my mom sharing her meals with us)
19. Not living in fear
20. Being mindful and having gratitude

Laughter and play have very important roles during times of such major stress. It's vital to release that tension in fun, healthy ways. I'm trying to write and do some kind of art every day. This has been helpful for me. I'm also not wearing black intentionally and keeping my clothes bright and cheerful. This helps my mental health.

I'm praying all of us stay healthy. Stay inside. Take care of yourself!