3 Weeks Post-Brain Tumor

It's been 3 weeks today since I had brain surgery to remove my benign Mengionoma. Something strange started happening last night. I started to feel angry. Here's some reasons that were running through my head:

• 9 month aggressive treatment for Latent Tuberculosis 3 years ago that was like a bomb setting off a series of autoimmune issues
• Chronic joint pain and swelling 
• Crippling fatigue
• I had a fricken brain tumor
• Whent through brain surgery
• Now I have 3 plates and 10 screws in my head
• Mystery muscle weakness that no one still seems to know why or what it is
• I now own 2 wheelchairs and a walker at age 45
• I need to use a handicapped parking plate
• What I can and can't do has changed dramatically over the last 8 months
• I have constant pain
• There are tons of things I want to do but just can't
• I'm worried I'm going to lose my job because of all the time off and constant doctors appointments
• I want to be able to travel like I used to
• I'm trying to not let my health issues take over my life
• I'm exhausted from being constantly optimistic
• I'm tired of spending money on all of these problems
• I feel like my body has completely failed me

I'm usually a very positive, optimistic person. I'm a problem solver by nature. When I get down, I don't stay down for long. But today is a "down day." I'm lucky that I'm meeting a friend for coffee later. I'll lean a bit on her let her cheer me.

I think this was all triggered surprisingly by my new wheelchair. I finally got the approval, it has been ordered and will be delivered to me November 1st. Yes, I want and need this chair, but I think it also triggered this cascade of anger in me that took me by surprise.

"Big Blue" - My new electric chair

Still not having a real answer about why my muscles suddenly started to give out back in March is horrible. The best I can figure out is it's some kind of "Inflammatory Myopathy." But that's just my personal guess (but it's more than what my neurologist has come up with.) All I know is I can do about 25% of what I used to physically be able to do and no one seems to know why.

My husband and I were hoping the cause was the brain tumor. When we first found out about it my neurologist even told us that was the cause. But quickly other medical professionals disagreed and said it was unlikely to improve anything muscular. However, before surgery my right hand and right side were much weaker than my left. Now they feel about the same. Who knows how or why? So my husband and I are still holding out hope that things will improve on their own.

Hope. That's so important when you're struggling with a chronic illness. I find when I lose hope it's necessary to connect with others who can hold onto it for me. My husband is fantastic about that and he never seems to lose hope. 

I found this lovely quote I wrote down a year ago from my Nana. She told me this over the phone and it's a wonderful reminder that as long as you are loved, there is always hope and comfort. It's a good reminder that I needed today. It's also ok to remember that I'm allowed to be angry. I've been through a lot! And I know the anger won't last long.

I can't forget it

My health problems never let me forgot that they're there. Every second of every day I can feel it. My hands feel stiff and swollen (even if they don't look it.) My toes on my right foot feel like they have sharp toothpicks inside them. My calves feel full of angry bees. My arms feel tired and weak. My head feels full of cotton candy, like someone wrapped a scarf around my head that I can never take off. I also feel dizzy. Like any sudden turn or movement will make me crash to the floor. And my back feels full of sharp spikes that stab me whenever I move. My mouth feels full of sandpaper and I'm always thirsty no matter how much I drink. Sometimes the back of my throat feels like fire, or like someone burned my tongue while I was sleeping. I feel all of these things, all at once, and more, all of the time.

This morning I went to my gym to do my aqua aerobics class. I love being in the water and look forward to these classes. In my excitement I did something I used to do all the time. I jumped into the deep end of the pool with water up over my head. It felt wonderful! Amazing. Like I was a mermaid. But as soon as I surfaced... "Uh oh. What did I do!?" Both ears were full of water.

That used to be no problem for me. I'd wait till I got home and thump my head a bit on a pillow and it would come right out. But with my inflammation and dizziness, that was a real issue. I tried to get it out there in the pool. Slapping my head on the water like some crazed seal. But it was no good. I spent the whole class dizzy and miserable. 

When I got home I went straight to my room to thump my head on my bed. It's a trick I learned when I was a little mermaid who spent every day, all day in the pool all summer long. It never failed me. A solid 20 minutes later I finally got it out. It was a LOT of water. 

I wish I could forget about my needs and just jump, dive and swim underwater like I used to. I wish I could have a glass of wine with a big plate of pasta. I wish I could hold a super cold glass and enjoy the coolness on my warm hands. I wish I could walk all day long at Disneyland or on vacation and not give a second thought to it.

But I can't. Not anymore. Now I have to plan, protect, prepare... I need "Meg" with me in case fatigue crashes down on me or my muscles give out. I need special insulated cups to protect my overly sensitive hands. I need to think about accessibility when making plans and going places. I need to not commit to too many things because I know it will take all of my limited energy. I need to avoid some foods because they could make my mouth ulcers worse. I can't forget that I have a chronic illness. If I try to forget, to pretend I don't, to assume that I'm just fine, then I only feel even worse. 

But I'm still lucky. Still grateful. I have many resources, lots of support and I'm a very smart person. I'm great at problem solving and working around things. I also have a lot of experience from raising a special needs child. I live in a very accessible town and even my house is super accessible. I have options, good health care and people looking out for me. I also live in a time when there are a lot of tools to help me work around my needs. And not just tools, but pretty tools! 

Yes, there are many things I can't do anymore, but life is full of constant change. There are tons of things that I CAN do and that list keeps on growing. 

Mobility Help

It has become clear to me that I'm in need of occasional mobility help. My muscle weakness/fast fatigue isn't getting any better. Any level of exertion just makes it much much worse. Even low impact activity like in a pool leaves me totally exhausted and "weak" feeling.

I used an electric cart for the first time yesterday and wondered why I waited to long to try it!

I wish every store had one.

But what device do I need? How do I choose? And will using one just make whatever's happening worse? It's important to me to choose the least invasive one so that I can still get exercise, but I also don't want my limitations to keep me home, or have me turning down invitations to be out in the world. It's a very tricky balance.

Funnily enough the most useful information I found about mobility options was through the National Multiple Sclerosis Society. It's a brochure titled "How to chose the right mobility device that's right for you." Now why they think this is only an MS thing, I have no idea. Many challenges can affect mobility and I thought they did an excellent job discussion options that were relevant to anyone, not just those with MS.

I found page 7 and on to be the most useful. I really like how the brochure breaks down each device into "What are the benefits - What are the limitations - How do I know weather this is the right device for me." Because of this helpful brochure I'm thinking of renting a "Rollator" to try for days we have more than 1 place (or 1 big place) to be.

This is a rollator. It's a walker with a seat.

Muscle weakness and fast fatigue are my main issues. I need a place to sit when I start to tire (which happens pretty fast.) Not being able to find a seat not only causes me pain, but it makes me really anxious. Last Sunday we were in a huge antique store and I swear that every chair had a "please don't sit" sign. It was like torture. When I finally did find a designated "rest area" I treated it like my home base. Yes, it significantly impacted my enjoyment of the outing. Had I brought a rollator with me I could have just sat whenever I felt the need, then kept exploring after I rested a bit.

Here's what the brochure has to say about the rollator:

How do I know whether a walker or rollator is the right mobility device for me?
A walker or rollator might be indicated for you if: 

• you can walk by yourself but feel that you need extra support for balance on both sides of your body
• you find that you are continuously holding onto the walls and furniture within your home for support
• you have good arm and hand function to move the walker or rollator forward while walking
• If you occasionally get tired and require frequent rest periods when out in the community, a rollator with a built-in seat may be a good option for you. 

It may be time to be evaluated for a more appropriate mobility device if, while using a walker or rollator, you: 

• hesitate to participate, or stop participating in the activities that you want to do in a day
• are falling or have a fear of falling
• are unable to independently walk with a walker or rollator for short distances in a reasonable time period
• are experiencing back, shoulder, arm, and/or wrist pain
• become very tired after walking short distances with a walker or rollator

That last one has me worried. My muscle fatigue might be so bad that:

1. Pushing it is too hard for my arms.
2. I'm just sitting every 20 steps or reluctant to get back up.
3. What if it hurts my hands too much or my grip isn't strong enough to push it.
4. It could be too hard on my back.

I have my upcoming medical appointments where I hope to get some answers and help. In the meantime I am finding that I'm limiting myself, my outings, what I do when and where because of mobility. I don't want to do that.

My plan is to look at renting a rollator for a month or so and see how I like it and how it goes. If it's a magical tool that is hugely useful, then I'll buy my own. If I'm unable to use it consistently or it's too tiring for me, then I'll look at trying out something else (like a scooter.) 

As far as mobility around my house I'm still golden. Hooray for a little house! The only exception I've noticed it when I'm standing for any period of time in the kitchen. My husband bought me this stool that I think will be a major help though. It also doesn't look out of place in a kitchen.

The hardest part about mobility is knowing what I need now. For how long I'll need it and will that tool keep me from using my muscles which will make my situation worse. I honestly don't care about what people think or how it will look. I just want what's healthiest and safest for me. And what will keep me out of my house and enjoying life as much as any introvert possibly can. 

Modification

I am blessed.
Not because I have a nasty chronic illness.
But because I have the means and live in a place and time where I can access items to make my life easier and reduce pain. I'm very aware that not everyone is so fortunate, so resourced or so supported. This makes me incredibly lucky.

As I get to know what I can easily do and what's more challenging for me I also learn what's worth the spoons and what isn't. Some things I can still do fine, but they cost so much in energy and muscle strain that it's just not worth it.

Here are a few things I found (all on Amazon - no affiliation) that have been making my life much easier. I'm not giving links to each thing because that's a hassle. Yes, I paid full price and wasn't compensated at all. But they've helped me.

This has helped the most. It's a UV sun parasol that's super compact. It has much better coverage that a hat and shirt and is light and easy to cary. It was less than $20 and it is the single most useful thing I've bought. If you're on a medication that causes sun sensitivity or sun reaction I 100% urge you to get one. I need to get another one so I can leave one in my car at all times.

This stainless steel mini chef knife has also been fantastic. My hand would hurt for hours after using our nice knives. This one has a rubber grip that has a bit of give so the impact doesn't go straight to your hand. The shape is very useful and the smaller size makes it perfect for things I regularly chop like onions. It's my favorite kitchen tool now.

Handles on cups are also a big deal now. They help me keep a grip on my glass and keep my hand from getting too hot or cold. Something you have to watch with both RA and Raynauds. My favorite coffee travel mug with a handle recently broke (not my fault.) So I bought this one. It's ceramic instead of plastic and I love the wooden handle. It fits great in my hand.

Click on the picture to go to the Etsy store

I'd been sneaking some thick cardboard cup cozies from our local grocery store and keeping them in my purse. These are wonderful for when you're eating out in a restaurant. They keep your hands from getting too cold and improve your grip on the glass. Though I also recommend using a straw, especially if you're on an immunosuppressant. 

But to put the paper ones on I still had to lift the cup up. I was looking for some fabric velcro ones that I could just un-do and re-attach once secure. I found this fantastic Etsy shop with hand made cup coozies in all kinds of fun fabrics. Now I have 2 in my purse and 3 for home. 

Ok... this one seems stupid. But I really love fresh ground pepper! I also love my "choose the size of your grind" hand pepper grinder. But that's exactly the kind of motion I'm supposed to avoid with RA. So I found these electric grinders that also have a "choose your grind" setting. I haven't used them yet because each one takes 6 AAA batteries (and who has that many just laying around!?) Next time I hit Costco I'll get a pack. But I'm so excited to have them and can't wait to get back to fresh pepper on my salad. If you don't indulge in this, you're really missing out.

I now own two of these amazing baskets. One of delicates and one for panties and such. No more toting heavy baskets out to my garage. Now I just wheel dirty stuff out and clean stuff back in. 

The biggest modification to my life however hasn't been in what I've bought. Its been an adjustment to how much I do and in letting my husband help me. He does almost all of the driving now. Not that I can't but he doesn't mind and it saves my energy. I tend to wait in the car for super fast errands like hitting the ATM. I let him get me gas when he can. It saves me touching the dirty screen and pump. All these little things can add up to a lot of energy and hand use. He's wonderful and doesn't mind picking up the slack. I do what I can like cleaning the kitchen counters (it doesn't require bending or pulling.) 

It hasn't been easy for me to learn to ask for help or to rely on him for more things. I'm very independent. My Nana tells stories of me being very little and refusing the help of others with a defiant "I can do it myself!" That instinct is still strong. But my husband told me a long time ago that "Just because you CAN do something, doesn't mean you should have to." That has stuck with me. I'm very blessed to have his support and help and now I don't hesitate to ask for it when I need it.