A Disabled Car Trip

In a little over a week my mom, myself, Max and Margo will all pile into my mom's Jeep and embark on an eight hour trip to the small beach town my grandpa lives in. I'm very much looking forward to taking both dogs to the ocean and showing them new things. They are great travelers, so I don't think we'll have issues. In fact Max has done this exact trip before.

Max and I the last time we were there. 
This time NO CHAIR!!!

But the big question you might be wondering is what am I packing? And how is that different than what a typical person would bring on a road trip?

I'm so glad you asked.

• Food. This is one of the big differences. I have to bring lots of protein with me and things I can eat. It's hard to eat while on the road and find healthy options. I'll bring the protein balls I like to make (almond or walnut butter - chocolate chips - rolled oats YUM!) Some gluten free crackers, dried fruit, sandwiches and chips. I have powdered vitamin and caffeine drinks that I can just pour into water bottles (to save on space.) I might bring a jar of almond butter with me just to keep in our hotel room. My mom already secured my favorite oat milk creamer for my coffee. 
  
  
•  Drugs. Lots and lots of drugs. I'll need my two different inhalers, my filled pill box's, migraine medications, migraine ear plug (for altitude changes), anti nausea wrist bands and patch, tummy medication in case I eat late... I will have a big bag of drugs with me.
  
  
• Braces. Many of my joins and muscles are still weak. Since I'm not sure exactly how we'll be helping out my papa I'll bring some braces just in case. Ankle, elbow, hands, knee, back. That should do it.
  
  
  Max loves the beach
  
  

These are all things that a typical person doesn't need to even consider when traveling. They can stop and eat anywhere without much of an ill affect. Maybe they'll bring some aspirin or Tums, but that's about it. Not a giant bag of drugs. They'll toss a pair of flip flops in their bag and not think about their joints or muscles much (if at all.) 

We're also going to make frequent stops to stretch, walk the dogs and take turns driving. That will keep all of us healthy on such a long drive. 

Wish us a Bon Voyage!

Don't forget Margo!

Reprieve

After my recent night of desperation I put into action some things that have been helping out my incredible pain.

1) Made a tote bag full of all my resources. Creams, gel, pills, patches. All the stuff I have for pain. Now instead of just laying in bed in pain I can grab that bag, go into the bathroom and choose something to try and relieve it.

2) I found my "stash." Back in 2020 I tried some CBD/THC products to help my pain and migraines. It worked, but I didn't like the side effects. I kept most of it and found that the high CBD low THC gummies did help my pain quite a bit. 

3) Tried something new! I found some new cream that so far helps better than any other topical product I've tried so far. All CBD. No THC.

I'm also being very watchful of my activity levels and how I use my leg. I'm trying to really be vigilant to give everything a chance to heal up. So far it still hurts, but not at all like it was. I'll take it!

Adapting our home

This is a big topic. It's also one that every disabled person I know struggles with. How to make your home work with you rather than against you.

Come to think of it, this isn't just a problem disabled people have. Anyone with a new baby, new partner, new hobby or hell! Just a life change has this issue. Our homes are living things. They need to constantly change to work better for our needs. I know my home now looks nothing like it did when my son was young and in school. Our needs were completely different then.

I've personally always loved changing my house to fit me. My husband on the other hand doesn't just dislike it... he HATES it. Though he does almost always enjoy the results. His reluctance and my chronic impulsiveness have a beautiful way of meeting in the middle to create our unique, well loved home.

Smartly when we had our floors replaced the last time we went with a hardwood without threshold molding between rooms. Just smooth easy rolling. This was before I was even disabled. I just liked the look. I love it when things work out that way.

Unfortunately our home was built in 1957 and you can tell. The bathroom is a closet and the doorways into each room are miniscule. Our home is what my mom calls is "Not disabled friendly at all!" But we're working on that.

During 2021 we had a beautiful stone ramp put in the front of our house. It even has it's own light. We made the front of our house disabled friendly and beautiful. Sadly, it also cost a butt ton of money. As does any remodel. Currently we're doing another one on the cheap.

This time we're changing our dining room and living room. I'm planning for a future when I may no longer be able to walk through our house and might need to use my chair. It also works out that my husband has a bigger office space, given he still works from home almost all the time.

So phase 1 in this new project was to move my husband's tiny office out of the living room and into our old dining room. This would allow him to purchase an electric standing desk and have about double the amount of space he had before.

After that we had some shelving professionally installed. This became the future "disabled kitchen" where I could keep everything I need to help myself. My protein bars, some fruit, a coffee bar, mini fridge with my vitamin drinks, my cups with lids. All that kind of thing. For now it's a bit of a hybrid. But we can easily change what's on the shelves if need be. It also cleared up some counter space in our tiny galley kitchen.

That was Phase 1 and it's pretty much done. Phase 2 will be to re-arrange our livingroom to make it easier to get my chair in and out of the front door. Also I can use my chair in the livingroom if I want with the new arrangement.

All of this has caused a big purge for us. That's not a bad thing. We're making space for the things we love and need and letting go of possessions that no longer serve us. Something my husband finds more difficult than I do, but he's been a champion.

I'm excited to make our home work better for us. And for our family and company! 

Prepping for the week

Meal shopping and prepping is something my husband and I (mostly) do together. Our town has a magnificent farmer's market that we try to go to on Saturday mornings. We stock up on eggs, fresh fruits and veg and occasionally cheese and meat there. 

I try to be careful where my dairy and meat is sourced from and there's a fantastic Scottish family farmer that we love. His eggs are beyond compare, each one tasting like golden love. (I received no kick back for this endorsement, but wouldn't say no to some free eggs.)

My husband has taken to doing almost all the meal prep for the week. He'll fill up all our water jugs then sauté up a giant batch of peppers and onions. We use them on almost anything, but have especially been enjoying veggie fajitas. 



I try and boil eggs for the week (for a work snack) and prepare my lunches ahead of time. This week is a delicious veggie, gluten free pasta salad with fresh herbs and veg from our trip to the farmers market. Delicious! (please read this in the voice of Gordon Ramsay.)

Hummus, bananas and yogurt are also a must have for the week. 

Aside from all this delicious grab-and-go food I like to make sure I'm also mentally prepared for the week. My job is very intense, emotionally charged and can be draining, so every little thing I can do to relax and re-set is very helpful. This means having clean clothes, taking a big nap, not taking on any big activities and feeling physically ready. 

Sometimes that looks like giving myself a facial or taking a bath (if my muscles are doing well enough to get in and out of the tub like that.) This week I got my nails done in a fun "out there" style that I've never done before.

Dragon Eye Nails

My husband and I also come up with a meal plan so we know what to make when we're tired and groggy after a long day. We try and cook together, but some nights all I can manage is keeping him company while he cooks. Just like with grocery shopping. We occasionally go together, but other days (like today) he runs off with a list we made to do the leg work.

I'm adjusting slowly to doing what I can when I can and saving energy for the really important things. It still isn't easy. But having bitchen nails does help.

Plan Kick Ass Week 1

We Have a Plan

I saw the neurosurgeon on Wednesday to talk about "Minnie." Turns out Minnie is more of a "Max." She's a big girl. You can see her here on the bottom right of the screen (though that's the left side of my brain.) 

Left Temporal Lobe Meningioma

Turns out because of her size surgery is really the only option. And it's happening fast. Like in two weeks fast. I'm not one to wait and to be honest I'm fine with this plan. Because we FINALLY have a plan! It was also super helpful for me to see the picture of it. Even if it was MUCH bigger than we were initially told (and from what I expected.) 

 

My initial feeling was "WOW! That sucker is huge!" But it gave way to a feeling of relief. We now know what it is and what can be done about it. All I have to do is "show up." My mom has a favorite quote that she came up with. "So much of life is just about showing up." I think she's completely right.

The waiting is close to over and we have an action plan. TO ACTION!

Everyone has been very supportive... and understandably shocked. It's not a very common thing to get a brain tumor. Add to that the fact that I also had latent TB just 3 years ago and I really need to start buying Lottery tickets because I'm that big of an exception. My picture should be on Wiki when you look up "outlier."

My nephew sent me the most adorable picture. He knows I love sharks. The red is "all the blood from what it ate." Awwwww! 

Yesterday I sent everyone an e-mail with specific ideas of how they can help us. You know when there's a crisis like this you want to help, you offer to help, but you don't really know specifically what to do and then the person has to go back and ask. It's just awkward all around. I thought if they all had some specific things to choose from it might make it easier for everyone. Times like these are when I'll take all the help I can get. Which is funny because my husband's more of the opposite. He tends to shore up and want to do it all himself. At least until I want to make him watch Frozen again. Then I'm sure he's happy to delegate.

In the meantime I'm trying to be kind and gentle with myself and resting when I can. I'm still very tired a lot and that's ok. I'm dealing with a brain tumor after all.

The big down side to all of this is my surgeon doesn't think the tumor is the cause of my muscle weakness. But we'll see. I know the brain and body are complex and you never know. Also without the muscle weakness I don't think they would have found the tumor till much later. And who knows where that could have ended up. Maybe the muscle fatigue was my body's way of making the tumor known? God works in mysterious ways. I'm just glad it was discovered and can be treated.

My Health is My Job

I had my first physical therapy session yesterday. I tried to keep any open mind and I'd say it went well. I learned quite a bit and am glad that I went. I'm going to go back once a week at least two more times and then see how things are going. We're focusing mostly on my neck and lower back (lumbar.)

(He's recommending I see an OT for my hands)

It was helpful to me to get another point of view on my body. The physical therapist was very knowledgable and said I'm having "systemic problems." Yup... I knew that one. It also inspired me to make a commitment that while I'm not working I need to treat my health like it's my full-time job.

My plan looks like this:

1. Continue eating a lot of fresh fish, vegetables and good foods
2. Workout in some way every day (Tai Chi for Arthritis video, swim at my gym, go easy in a fitness class, walk, whatever I can do that day)
3. Get plenty of rest
4. Drink lots of water (but not right before bed!)
5. Go low carb and high fiber
6. Keep in communication with my doctor and make my needs known
7. Attend all appointments, labs, scans, tests and try to keep an open mind
8. Be kind to myself, go slow, be patient and understanding
9. Let others help me when I need it and ask for help when I need it
10. Not keep my challenges to myself

I find planning and making goals to be really helpful. It makes me feel like I'm not just idling while I wait to start my new job. I like the feeling of "proactivity." I'm also ok to constantly refine my goals and adjust them to what works and what doesn't. For example I recently ditched "juicing." I love the juice and it was a good start to my day, but I just didn't have the spoons to spend 20 minutes to make 1 glass of juice. The cleanup alone was exhausting! So I modified my plan and I now buy a green juice with no sugar already made from the store. I'm sure it's not as perfect as making it yourself, but I modified and went with what I could do.

My husband and I have fallen into a great rhythm in the kitchen with dinner time. He handles anything too cold (because my hands are super temperature sensitive) and does all the chopping. I do the main protein and carb. This also keeps us on opposite sides of our dinky kitchen and out of each other's way. It's something I really enjoy doing and it works great for both of us. 

Life is all about learning and adjusting. Letting go of what no longer works for you and learning new ways to expand on what does. These last few months have been a major time of change, but I think I'm coping with it pretty well.