Still Grieving

In the 4 1/2 years I've been writing this blog I've only done one post on grief. And even that one I managed to twist into a hair post. Hah! That sounds just like me. Grief is hard. It's hard to talk about, write about and to go through.

Sometimes I'll be talking about a new symptom or pain I'm going through and I'll just start crying. I'm often surprised by my emotions around my illness. They like to sneak up on me. For me my grief is often masked by my upbeat positivity. But this is a very thin crust. Poke it just a little and I crumble.

My life is nothing like what I thought it would be. I have had my MFT license for three years now and haven't been able to use it. I worked 10 years to get that license and have my "dream job" of being a psychotherapist. Only to watch that future slip through my fingers.

I thought I would be contributing financially so the burden wouldn't all be on my partner. So he could retire early and not have to stress about money so much. Instead I'm worried he has an ulcer from his stressful job. It sucks. Bad.

I thought I'd be able to walk and run for much much longer. I thought I'd have a pain-free life. Or... you know. At least a normal amount of pain. I never could have imagined I'd have migraines, plates and screws in my skull, the level of forgetfulness that I struggle with, not be able to take a bath because I can't get in and out of the tub... (This could be a very long list.)

Yes, it could be worse.
Yes, many people are in similar situations.

But it's still ok for me to grieve my massive loss. And for those close to me to grieve too. It's bullshit that I can't work. That my body does nothing but fail me.
I'm angry.
And sad.

And I'm entitled to feel that way and to let it all out every now and then. 

My Migraine

No... "Migraine" is much too small a word for what daemon has wrecked my life. The clinical term might be "migraine" but it's more like an evil possession.

Some of my current diagnosis

My muscle disease affects my body, but the migraines rob me of much more. Most days I feel like a shell... a ghost of my former self. It robs me of my memory, my attention, my eyes focusing, trusting what I'm seeing. It causes me stabbing pain, electric shocks, ear ringing, momentary hearing loss, throbbing pain, visual hallucinations and a general feeling of being really drunk or really high without ingesting anything.

Personally I think all of this is a side effect of my brain surgery on September 27th, 2018 (28 months ago). I read that nerve re-growth and associated issues can take around five years to heal. I would have proceeded with surgery anyway, but I wish someone would have gone over the side effects and talked to me about migraines.

My entire life I've infrequently had very minor headaches. I'd pop a few Excedrine and off it went. I knew people who struggled with migraines, but I thought it was just a super bad headache that maybe caused some nausea, light, sound and scent sensitivity and would last about 24hours. At best I feel like I knew a little bit more than the average person.

But when my migraine symptoms began it wasn't with any of that. I'd have a little headache behind my forehead. Just a tiny one. My symptoms started with feeling very dizzy. I felt like I was hearing myself talking from another room when I'd speak and hearing others talk I felt very far away. That's a big problem for a therapist. I was scared and had no idea what was going on. 

I quickly became too dizzy to safely drive. My husband began taking me to work. After that I could "hang in there" till lunch time, but the symptoms just got worse. With it came the crushing fatigue. I wasn't just tired, I was completely exhausted. It felt a little bit like a horrible hangover.

The headaches began getting a bit worse, but the other symptoms increased quickly. I started to have trouble focusing, both mentally and physically. My eyes would go blurry, like I couldn't physically focus. Of course I still had my muscle issues as well. The worse my migraine symptoms became the weaker my other muscles were. Soon work was ordering me a text to type program for my files as I lacked the physical stamina to type for any length of time. But nothing helped and I became too compromised to work at all.

I had no idea what was going on. I talked to my primary care doctor, crying in his office. He sent me to a neurologist and an ear, nose throat doctor (otolaryngologist). Both of them diagnosed me with migraines right away. I kept arguing that it couldn't be migraines as my headaches "weren't that bad!" I had no idea that migraines take many shapes for different people with an enormous list of effects. I sure know that now!

Every... single... day I struggle with nightmarish symptoms.

I can't work.

Some days I can't even leave my house.

I'm proud of myself for getting out of bed, dressing and showering.

A big part of my life has been reduced to that of a small child.

I have a lot of feelings about that.

Grief

Loss

Anger

Sadness

Fear

My current treatment regimen involves:

• 32 Botox injections around my head and neck every three months.
• Monthly Emgality injection.
• A cocktail of Procholorperazine 5mg (for dizziness and nausea), Naratriptan 2.5mg and 2 Acetamenophin 500mg taken together as needed (but no more than three times a week).

These all help a little.

I'm still not myself though. 

Still unable to do very much.

The worse my migraines are the more exhausted I am and the weaker. It's a nasty cycle. I'm hoping something will click soon to cause a massive improvement or they will heal and go away completely. That would be wonderful!

Until then I sometimes struggle to feel my worth. It takes a lot of intention and attention to really live in the moment. Not let each one slide by in a fog. I do have a beautiful life and I don't want to miss out on any of it.

Processing Grief

I lost a lot when I became disabled. 

A big part of my identity was wrapped up in my job. No... my career. It felt like I had just barely scratched the surface of a huge part of my life when everything was turned upside down. First by my muscle disease that cause my energy and mobility issues, then again by my brain tumor that left me with potentially life long side effects.

I am very resilient and landed quickly on my feet. I also have fantastic family support. However I don't think I entirely processed what had happened. I feel like I was just taking it one day at a time in survival mode going from one medical appointment to the next. My identity as a helper of others had been turned around completely and now I was the one in need of help. 

I realize now that the dust has settled a bit (and even though that we're still in a global pandemic) I'm finally processing what happened to me. It was very shocking, completely life changing and horrible. Now I'm having to grow my other identities (and dust off old ones, like being an artist) to rebuild myself. 

A Sharpie drawing I did for my Mama

One thing that hit me hard this weekend was that I had been feeling entirely unattractive. My sexuality had been smashed along with my confidence. Not very long ago I was a full time wage earner, busy but invigorated. Now I feel like a "fat, old crippled lady." (My words)

Of course one fix is slow. Weight loss (which I REALLY need to take more seriously!) The other is my sexual confidence. When I look good, I feel good. But let me back up.

For the last 7 years (since I turned 40) I have flirted with my "natural" hair color. I had been a life long dye addict and was curious what my real hair color looked like. So began a very long repetitive process of growing my hair out, coloring it, then whacking it short to go back to my natural color. After my brain tumor I tried out Henna and shunned the drug store box because of the chemicals. But that was a long process that was also very messy.

Well, this weekend I decided to color my hair again. Not henna, but not the drugstore box either. I went with a natural botanical brand of permanent dye and I picked "Licorice." I wanted a black vixen look like Elizabeth Taylor. 

My Mama took me to our local co-op and they had just what I was looking for. Then she colored it for me at her casa. I actually really love it and do feel much sexier and confident in my looks. It's silly how such a little thing can help me mentally, but it did. 

For me this was less about dying my hair and more about regaining some much needed body autonomy. I often feel like my body runs the show and I'm just along for the ride. This time I took the (black) reigns and got some control back. I also happen to think it looks great, which helps my self esteem. All that for just $18. 

I know I'll continue to process and grieve for what I lost, while being aware the whole time of how very lucky I am. My feelings aren't exclusive and I give myself full permission to feel both.

Woman of ACTION!

I think we've all heard the quote by Alexander Graham Bell "When one door closes, another door opens." But did you know that's not the full quote? The full pearl of wisdom is...

"When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us."

Today is my last day at work. The agency I work for (helping other people) is shutting down. There was no notice, no severance package and it has been incredibly stressful. In fact, "incredibly stressful" perfectly sums up my month of April for 2018. I can tell the stress is getting to my husband too who has his own demanding career.

When massive stressors come into our lives, it's very easy to just freeze up and stare at that closed door. And stare and stare and question. So much so that it's easy to miss other opportunities and options.

Take a life changing diagnosis. It's easy to stare at the closed door of things you can't do, or shouldn't do and completely overlook what you still CAN do and ways you can adjust your life to do them.

Now taking Plaquenil I learned that I need to keep out of the sun as much as possible. I could stare at that closed door... or rally some assistive technology to keep on doing what I can.

Take THAT sun!
I'm a full shielded vampire ready for some nature.

I found this compact UV sun umbrella on Amazon (no affiliation). It folds up small enough to keep it in my purse. It's good for short bursts out in the sun. If I was going to be out ALL DAY I'd use something else. But for a short little nature walk with my husband this weekend it was perfect. 

I also did a short burst of twilight gardening Saturday night. As soon as the sun went down I covered up (no mosquito bites) and enjoyed some much needed time in the garden.

My spring onion haul!

I wasn't out there nearly as long as I used to be, but I was still able to get a little bit done and it felt great. Plus we had some delicious onions for dinner.

I've been modifying how I do things to accommodate my current needs. I've also been hunting for a new job... Nap anyone?

My compression gloves and nap buddy.
Zzzzzzzz.

I would say instead of staring at the closed door I've jumped right down the hall and am searching for what's open. Sure sometimes I look back at that closed door and feel sadness. But in general I'm just trying to find my "new normal." I'm really looking forward to that. And a nap. Never enough naps.

Seriously? "Reduce Stress!?"

The #1 advice I read over and over again is "reduce your stress." These articles/books/blogs will often go to on suggest "take deep breaths" or "go for a walk." Now I'm not saying these things don't work, or that it's a great idea to try and keep stress down. But you know... life happens! Like this gem I encountered today.

Are you serious?

I spent an hour on a major company website filling out a detailed application only to have it eaten and vanish when I hit submit. That's real life stress right there. Not to mention I'm having to job hunt again after only being employed for barely a month. But I'm supposed to just not let it get to me and go for a walk?

Well, it's no surprise that I woke up to a bit of a flare this morning. I also was really busy this weekend. And despite my husband making me take breaks, I still managed to do too much. My hands hurt and were stiff. The worst since starting the Plaquenil. I was thirsty all night and just felt sore this morning. Oh! My face is also breaking out. Yeah that's the face of stress.

But back to job hunting for a second. 

This is a standard question all employers ask. I never thought much of it before today. (click on it to see it larger if you don't read chicken scratch.)

So I ended up checking "no" because the descriptive words they used were things like "substantially limits a major life activity." And frankly also because it's not their business. So far I can work around all of my needs just fine. If I required some ADA services or major accommodations that I couldn't provide for myself I might have checked "yes."

I really hate that employers expect you to disclose something so deep and personal in such a way. In fact, I think it's really awful. And there's the "s" word again, right? "What if I mark yes? Will they not hire me because I said I have a disability? If I mark no and later need accommodations will they fire me for not disclosing sooner?" These are real life concerns.

Another reason I marked "no" is that I'm still figuring all this out. Until I know 100% what's going on I don't think my employer needs to know. 

So yes, I try my best to keep stress at a minimum, but some days I'm more successful than others. And after 2 hours on a cruddy website I was rewarded with this alert.

YAY! PICK ME! PICK ME!

I've applied for 5 jobs this morning and I feel good about them. I'm hoping something will come through soon. Now excuse me while I go eat some breakfast (food always lowers my stress.)

ENOUGH Lemons Already!!!

I've always really hated that saying "When life gives you lemons make lemonade." How about "When life gives you peanuts, make peanut butter." I've been making lemonade and peanut butter all week. But yesterday a really big challenge came my way. My new job that I've been at barely a month let all the staff know that the agency is closing. They might be bought out by another agency (one I don't care for) or they may just close. I was crushed.

I hadn't even been on my RA medication for 1 week and now I have to job hunt all over again. I know I'll find something else, but it will take every spoon I have and then some. I'm also very sad to have to leave my clients, people I had just started to get to know.

As devastating as all this feels, it's helpful to remember a few important things.

1. It's ok if I don't make much money for a little bit. My husband's a hard worker with a good income. He busts his butt to support us, so that's a bit of pressure off. We won't starve and can pay our mortgage. 
2. Maybe this new job will be an even better fit?
3. The Plaquenil is helping and I'm feeling better than I was even when I was job hunting a month ago (and I'm sleeping much better, which makes a huge difference.)
4. I have love, encouragement and support of family and my husband.
5. I have some very good leads. My supervisor gave me 4 people to contact in my town about a job and I found another promising one on Indeed.com this morning.
6. I've done incredibly challenging things in the past and overcome a lot. I know I will in this case too.
7. I still gained good experience and met new people, even if I wasn't there as long as I'd hoped.
8. It sounds like I'll still have my job for about a month, so I still have a little money coming in. Not a lot, but it's better than nothing.
9. I was worried about working full time AND my body adjusting to the new medication all at the same time. Now I think I'll have a little bit more of a gap to adjust to the medication before working full time hours.
10. I have faith that everything happens for a reason. That's a comforting thought. I do believe there's a plan for all of us and that suffering comes when you try and figure it all out. Sometimes you just need to trust and be willing to do your best (while letting the rest go.) I've absolutely done my best and this situation is no reflection on me personally.

Try and have some faith and trust.

One more thing worth mentioning...

I honestly believe there's no such thing as a "horrible week" or even a "bad day." There are challenging moments and easier ones that all come and go. Even though this week as a whole felt especially challenging, it did have its bright spots.

My mom sent me this double orchid plant after I told her about my RA diagnosis.

It was a bright spot in my week.

A dear friend sent me this notebook with art that she did on the cover.

When I feel loved by those in my life and thought of it can make a world of difference. A text from my son can brighten my moments. Having coffee in the morning with my husband can start my day off right. All these things give me spoons and are so important when feeling overwhelmed by life.