Fifth Brain Surgery Anniversary

Five years ago today I had a craniotomy for a benign mengianoma. In English... I had brain surgery for a non-cancerous brain tumor. It was growing in the left side of my brain just above my ear. The surgery was very long, but everything went as good as it could go. I documented it here.

I celebrated by spending the morning at the gym...

I work out for 2 hours almost every day.

Some kind of cardio for an hour, then swim for an hour.

Then I came home and had a delicious veggie burger. The patty was "mushroom risotto." Very unusual but so good. I ate it with the last of my sweet and spicy pickles. Fermented foods are important for me to have.

When I got home Max and I ran some errands. He's my best boy. I carried him in his sling through the grocery store, but he got to walk and explore through the hardware store. What a lucky dog.

"Go faster mom!"

Now I'm finally relaxing with a nice glass of Kombucha. It feels good to be off my feet. 

I like to remember where I was five years ago to make sure I savor each and every day. I'm grateful to be here. Thankful I can walk. Delighting in shaping my body to be strong.

CHEERS!

Botox Injections for Migraines - Take 2!

I FINALLY got to have my second round of Botox injections. The first round went very well, even though it took almost a month for me to notice a difference. My neurologist said that I have to wait the full 90 days both because of insurance and because of research showing any sooner than that could be dangerous. Damn.

It went well, though I think I got more shots than last time. My husband lost count and I forgot to ask. I know she was doing a bit larger dose in some specific areas. I have the most problems with my left side (no surprise since that's where my plates are from my brain surgery.) 

It did feel a little more painful than last time, but it's also hard to remember from three months ago. I ended up coming down with a raging migraine and my head feeling like it had been stung all over by bees, but it's all worth it if I can get the same relief (or more) than last time. 

Funnily enough I can live with the migraines, it's the chronic vertigo that did me in. Also the "Alice in Wonderland Syndrome." Vestibular migraines are no joke.

With my Metabolic/Mitochondrial myopathy I have learned that anything can set my body off. I become very sore, very stiff and have an incredibly dry mouth during the night. When these things happen I know something is "off" with my body and I need to just rest. That's what happened yesterday after the shots. I came home and crashed out for almost six hours. Then woke up every hour last night in terrible pain and with serious dry mouth. 

Today is also a rest day.

No shame in listening to your body!

Mine speaks a whole language all her own, but it's one I'm slowly learning.

Curious to read more about Botox for migraines? Click here (no affiliation).

How I've Changed

Humans are bags of squishy bacteria and water. We're sensitive and vulnerable. It's amazing we live as long as we do given our ability to succumb to the slightest virus, infection or change to our bodies. And we do change. All the time.

My body has been through a lot in its 47 years. Car accidents, a pregnancy, multiple surgeries, TB, brain surgery and a genetic mutation. Without modern medicine I would have died a hundred times over by now. But not only am I still here, my serious health issues have changed me... for the better.

I believe I am a much better person now than I was before I had Latent Tuberculosis or my brain tumor. I am far more patient. I let little things go very quickly. I have a lot more perspective and love for others. I'm way less shy and more outspoken. I am fast to let people know I love them (animals too). I smile a lot more. 

But why?
How?

Because I know now what's most important. It's not being first in line or looking young and beautiful. What's most important to me now is that the people I love KNOW 100% that I love them. That I leave strangers feeling happier and in a better mood than before they interacted with me. That I make the world a little bit better just by being alive. By being here and a part of it. That's what matters most to me. Not superficial, shallow stuff.

Each day I'm grateful to still be here. I'm appreciative that I have my beautiful wheelchair and medicine to help me feel better. Doctors who try and help me live my best life and a family I'm devoted to.

I hope I'm here for years to come because I love my life.

Stopping Topamax

It is important to remember that even the best, most caring doctor doesn't know the whole story. Doesn't see the whole picture. They (hopefully) do their best to care for you but at the end of the day you need to be the REAL specialist, advocate, researcher for yourself.

That said, Topamax was not for me. I tried 25mg for one month. My neurologist wanted me to give it two months and I said "no thank you". I understand why he wanted me to try it for longer, but the side effects were too much for me and the benefits not enough. 

And a little advice about being a wise consumer. ALWAYS read the FDA information vs the information from the manufacturers website. Always. Just skip their website completely actually unless you're looking for a coupon or rebate.

These are my symptoms that got worse on Topamax:

• dizziness
• dry mouth
• "foggy headedness"
• forgetfulness MUCH worse
• reduced my libido even more
• wiped out my appetite.

Well, that last one wasn't bad, but for some people it could be. I was also on the very lowest dose for the very shortest time.

Both my dizziness and the migraines I think are from my brain surgery. Even though it has been a little over a year, I think the nerves are just now growing back and I'm experiencing pain and dizziness. That's my theory and I think it's pretty solid.

So far what has helped me more than the Topamax has been...

1. Taking Potassium pills at night with plenty of water. This helped with the dizziness a lot. My neurologist suggested it when I said the Topamax was making things worse.
2. Taking more Magnesium than what I was already taking. Again, recommended by my neurologist.
3. Taking the over the counter supplement called "MigreLief". Recommended by... yup. You've got it.

There's plenty of other non medicinal things I haven't tried yet. I have my first follow up on the 12th with my neurologist and I told him I'd like to discuss them.

My muscle weakness seems to have hit a homeostasis (for now... Thank GOD!) That feels nice. I'm still doing what I can but careful not to push it. My body and I feel like we're on friendly terms and that's magnificent. I think she's a lot happier now that I'm not shaving her down like a sheep in the spring every few days. Hahah!

So now onto trying new things after my two week slow reduction off Topamax. Never stop any drug all at once or without notifying your doctor.

(I received no incentives and I'm in no way affiliated with any of the links on this blog.) 

Time out for me

When you're chronically ill and disabled it's easy for all your time to get sucked into your disability and YOU become secondary. It's your disability that comes first. You are a "disabled woman" not a "woman with a disability". There actually is a very big difference between those two phrases. One puts the person first and the other puts the disability first.

Doctor's appointments, picking up medications, fighting for modifications and DME (I hope you never need to know what that stands for but in case you don't know it means durable medical equipment). It's easy for ME to get lost. So lately I've been trying to really put my self first. It hasn't been easy. One way I've been doing that (and it will sound stupid) is with my teeth.

Having had a brain tumor has made me terrified to go to the dentist. I'm scared of getting x-rays of my head and that the drill will hurt my plates and maybe make a screw come loose. I'm pretty positive these fears are irrational. I have a good dentist who sees my family and who knows about my brain surgery. They've agreed to make accommodations and do whatever I need to make me comfortable. 

So I've been brushing twice a day (I used to never brush in the mornings) and I bought a water pick that I've been using at night. I'm trying to take better care of my teeth leading up to my appointment (and noooo, not just the day before thank you very much!)

The other thing I'm doing is trying to take very good care of my skin. And I was rewarded with yet another fever blister. My second in a single month. I think something is going on with my immune system. -sigh-

One way I take care of my skin is I rarely wear makeup. Like maybe once a week. What do you think. Better with, or without?

Weirdly enough I think my eyes pop more without makeup. Strange! Though I do like covering up my old fever blister scar more with makeup. 

But I think it's not makeup that makes one attractive but an authentic smile. Don't you? One that comes from deep down after taking time out to see friends or family after an afternoon of taking good care of yourself. 

Hair battle

I have always had a battle with my hair. Even before I had any kind of illness. It has been every color of the rainbow (at least once.) Mostly I keep it pretty short or in a bob. It's very fine, straight and thin. I feel this limits me to what kind of style I can have. And don't even get me started on how many curly home perms I've had in my life.

When I turned 40 I was curious what color my hair actually was and I stopped coloring it... for a while that is. Then I would go back to dark brown or black, then grow it out again, then repeat this step over and over.

Then I had the brain tumor and no more color for me. Or so I thought. About a year later I tried organic henna and liked it. I've always been partial to red hair. So that was it! I was going to henna my hair every month or so and grow it out.

Orrrrr am I?

Honestly I kindove miss my natural hair color. And having a short pixie. It's so easy to care for (which is a really big deal to me right now) and I like the look. When I see a mature woman with a short pixie I think it's cute.

Here's what I'm sure of. I will never "box" or salon dye my hair ever again. I won't subject myself to chemicals. I like to play with my hair. It's a fun accessory that makes me happy. But I can't swear off changing it often or going back and forth on the henna or my natural color.

Post hair chop today

When did Myopathy start?

I've always placed the start date of my muscle weakness April 26th 2018, 13 days after starting Plaquenil. My husband has felt that it was the Plaquenil that caused my Myopathy. But I had a memory the other day that places the real start date MUCH earlier than that. 

I remembered being at Disneyland in November of 2017 and feeling like I was being especially tossed around. I even told my husband that I felt "weird," like my muscles weren't holding my body in place like they should be. Upon looking back I'm wondering if that was my first sign of myopathy.

Not having a very specific diagnosis is frustrating, not having a clear cause is also frustrating, but now not even really being clear when it could have started? Yes. That's hard.

Is it just a genetic mutation that somehow got turned on? Was it the affects from my brain tumor that I'd had since at least 2015? Was it from the Latent Tuberculosis or the medication used to treat it in 2016? Is it from the Plaquenil I was put on in 2018? I may never know. 

Having a chronic illness often means endless doctors appointments, new symptoms that sprout up literally overnight and having more unanswered questions than answers. I'm slowly learning how to live in this zone of "unknown".

I may not know exactly when my muscles started breaking down, but I do know how it rules my life today. I know I can't dwell on what I used to be able to do yesterday that maybe I can't do today. And I can't focus on what I may not be able to do tomorrow. I live each day as best I can and feel grateful that I'm not in this alone. 

All in a year

I started this blog just a tiny bit over a year ago. Reading my first post I shook my head in disbelief at all that's happened since I wrote that. I had no answers at the time. I just knew that something was very wrong with my body and I was struggling to get the help that I needed. Oh how right I was! And luckily for me that help did come. 

A year ago I said "my body just decided not to be doing so well"  that could have been the biggest understatement of my life. In fact I'm sure it was. What was really going on was: 1) I had a benign meningioma brain tumor growing in my left temporal lobe. 2) I have Rheumatoid Arthritis. 3) I have a genetic disease called Metabolic Myopathy. Soon after that post my muscles would begin failing me and it remained a mystery till November just what was going on. 

Reading over my frustrations, anger, hope, struggles and yes... fears I feel nothing but empathy for myself. Frankly I still can't believe that I went through brain surgery just seven months ago and have metal plates and screws in my skull. It's hard for me to wrap my mind around (pun intended.) Or that I'm technically also a mutant with my mutated genes causing the metabolic myopathy. I mean really? Was the TB just not a big enough of a deal?

I still feel like if people knew the whole story of what I've been through in the last four years they would think I was making it up. It's just too fantastic that someone can go through everything I've been through health wise. I fear they would think I'm faking it or lying. But it's all true. And I'm still here.

That's the best part. I'm honestly happier than I was four years ago. I'm also a better person. I'm less judgemental, more fearless, more forgiving, more patient and more empathetic than I was four years ago. I think great suffering is like that. Either you give in and struggle in the darkness full of fear for your life or you embrace the wonder that is our time here. See the miracles all around and love till your heart just can't love anymore. I chose the second one. 

I have my family, I have my tools, I have my spirit and my body is still here doing the best that it can each day. That's pretty magical really. I'm one lucky woman!

Wheeling through arizona

My husband and I recently took our second trip with my electric wheelchair "Ariel." The first time we took her to Oahu, Hawaii. This time we went to Arizona. Even though my Metabolic Myopathy has improved with the mega dosing of Q10, I still can't walk long distances or for a prolonged period of time. That's where Ariel is super handy. I also have my matching cane for shorter distances, which is a fantastic tool.

I have a travel bag that I bought with my chair. It was worth every penny. It keeps her safe in luggage handling and makes it easier to transport her for the handlers (and my husband.) Here he is putting her in the bag at the gate before pre-boarding. 

Since I am able to get in and out of my wheelchair, with regards to TSA I hand her over to them for a full check while I go through the body scanner with the able bodied people. I found this is easier on me than going through the full check in my chair as I have to get up and down a lot and that's hard. It's also usually faster. That is it's faster IF they don't get some weird chemical reaction from your chair, and then make you go through ANOTHER chair check and a full pat down (true story that happened on the way home.) 

It's great to have my own chair in the airport because no one has to push me and I can handle my own suitcase. So far no damage has happened to my precious chair either. YAY!

In Hawaii (my first chair vacation) My husband bought this plumeria sticker for me and I put it on my chair. The plan is to get a new sticker each place we go!

It was easy to get around our hotel in the chair. Though just like when we went to Hawaii I don't think our room was actually a handicapped room. There were no bars in the shower (which I REALLY MISSED!) And I was glad I was able to walk around our room on or own or there could have been some issues. I think it's best to book on the phone with a real person and request an accessible room vs online. Next time that's what I'll do. But this time we were on the first floor which made a big difference. Elevators are doable, but a pain and who needs pain on vacation?

We more or less staid around our hotel for this visit so I didn't have the issues of getting in and out of shops that I had in Hawaii. What few things we did do in the downtown area were 100% accessible. Things seem nice and roomy in Arizona with very wide sidewalks, wide streets and accessibility in mind. I appreciated that. 

All the hotel staff were very friendly. The lounge chairs by the pool were a bit tricky to get in and out of, but I managed. That's where my cane came in super handy.

And like I said before, I also wore a bikini for the first time since I was about three I think? Never in my adult life have I worn one. Never is too long if you ask me.

Fearless woman that I am (thank you brain tumor) I also got a new tattoo!

PS: We flew Southwest this time and I FAR prefer them over any other airline so far. They were very friendly and it's open seating. They're serious about people with disabilities going first over people with children (who think they should get to go first for some reason.) That means I got a seat right up front (THREE CHEERS FOR SHORT WALKS!!!) With extra leg room which I dearly need when I fly. I highly recommend them. 

What's New?

It must be December because suddenly I'm super busy. Trying to juggle my RA symptoms, viruses that keep sneaking up on me, still recovering from brain surgery and testing my ongoing muscle weakness issues. Oh yeah... AND I just started working full time. This past week I moved up for 30 hours to 40. But I'm happy to report that it went really great!

I found this pinecone on a walk around my office complex. 

Isn't nature amazing?

I love my job and feel blessed to be able to do what I do. This week went very fast and didn't feel like that much of a shift. Of course it helps when you have a supportive partner like I do. He did all the shopping, cooking and cleaning up this week. All I had to do was come home, eat and sleep. I'm always grateful for his support.

I've also been sleeping world's better recently. Much deeper with longer REM stages. I think the brain tumor was screwing with my sleep and I didn't even know it. And a good night's sleep can help like no other medicine.

Aside from all the love, support and great sleep I'm trying to be careful with my eating. My husband and I encourage each other to get protein in the morning. I also pack a lunch to eat healthy even at work. I never forget the snacks! My favorite is a hard boiled egg. It keeps me feeling full and gives me energy.

I did a little art project the other day using paper plates. One side is the "Me" that everyone sees. Happy, healthy, smiling. The other side is the "Me" that is much harder to spot and only my husband really sees. That's chronic illness, pain, sickness, exhaustion, sadness, frustration and all my symptoms.

I showed it to my husband and he said it made him sad. I understand. It's hard having two sides with you all of the time. Every time someone tells me "YOU LOOK SO GREAT! YOU LOOK SO HEALTHY!" I actually flinch. Because I know that they're only seeing what I present and none of the struggle and suffering. It's not all of me. Not even the most important part. It's just the mask I put on every day. Do you ever wish people could see what your chronic illness really looks like? The toll it really takes on your health, both physically and mentally? I know I do.

Out and About with Ariel

Ok. THAT was an exhausting weekend, but incredibly fun. Almost enough to distract me from the fact that tomorrow is the roller coaster into my first 4 day, 40 hour work week in over 26 years. I'm a bit terrified. And lest we forget I'm also only 8 weeks out from  major brain surgery for a tumor. 

"Ariel" (my new folding, light weight, electric wheelchair) performed really well. Compared to "Dory"  she has a response delay to her controls and is a lot smaller (but that makes sense to cut the weight.) She has a lot of power and even managed to go over some wet grass today. I'm thrilled to have her and couldn't have done anything I did without her help. She's already becoming an extension of me. 

But isn't a picture worth a thousand words? My smile should tell you how happy I felt with my new independence and "assisted stamina." 

Pictures from a Christmas Light event in our town last night.

I went about 3 miles around town in her today. 

Problem Solving

The left side of my head where I had brain surgery is still puffy, even though this Thursday will mark 1 month since my operation to remove my tumor. I'm not sure why I thought having 3 plates and 10 screws in my head would NOT make it puffy for a very long time, but I did. I blame the whole "impatience" issue I struggle with.

I bought some beautiful new glasses very soon after my surgery, but I haven't been able to wear them because of the swelling on my head. The eye tech loosened the left side as much as she could and I thought that would be good enough, but each time I tried to wear them it was painful and I was left with a large dent right where my plates are. Not good!

Today I swore I'd solve that problem. I love my new glasses, I'm tired of wearing contacts all the time and I want to wear them. I was looking on Amazon for some magical solution when it occurred to me. "All I need is some kind of adhesive soft pad for the inside. FURNITURE PADS! I think that might work." So here's what I did:

1) Get out my furniture pads, tape (in case I need it. I didn't.) and small sharp scissors. Oh! and my glasses of course!

2) Cut a long pad to fit the length of the side just to the part that curves along your ear.

3) Place it on the side of the glasses, then measure and cut a thinner piece to follow the curve of the ear (a thick piece won't curve as well.)

4) Put the new thin piece carefully on the ear curve. Press both pieces down firmly to adhere.

Now I'm ready to see!

You can barely see the pad here. But that's ok!

YAY! Now I just hope they don't leave a dent. I'll try them tomorrow and see how it goes. Hopefully that's another problem solved. 

10/25 UPDATE:

Well, so... that did work and it didn't. Yes it made my glasses not hurt and it did provide padding, but apparently even that is just too much yet. It made my head really swollen the next day where I had surgery. I think the problem is that where the arm of the glasses go is RIGHT where I was cut into and where my plates are. So for now I'm back to contacts. -sigh-