Expectations

I feel strongly that expectations are the tool of the devil. And yet I fall prey to them constantly. My husband and I just went away for a seven day vacation to Oahu Hawaii. And yes, I had expectations. 

I got tired, but still wanted to be in the ocean. Our hotel had free floaties for use, so I grabbed one. Just like the shark in my tattoo. Good choice.

I (foolishly) expected I could make it through two major airports with just my rollator and leg brace. I expected to be able to walk through a large museum with just my rollator. I expected to be able to do a 1/2 mile walk, swim in a waterfall and then walk back the 1/2 mile.

One of the few nights I wore makeup.

Where did these expectations come from? I believe it's from my own internalized ableism. Seeing medical equipment as "lazy" or "not pushing myself." I mean, I can walk, right? Well, that's a loaded question. I can walk, just not as far as I thought.

Too tired for makeup. Enjoying a delicious "mocktail."

I also learned that staying in a hotel is very different then staying at an Air B&B. There's the walk down the hall to the elevator, out the elevator to the breakfast buffet, back down the hall to the elevator, down another hall, to your room. That's a TON of walking and we haven't even really started our day yet. It took a toll on me fast.

I WAS good about letting myself rest as much as I needed.

This was my takeaway:

• Always stay in an ADA room if staying in a hotel. I need a shower stool.
• Always bring my travel electric wheelchair on vacation. I never know how far I may need to walk or how long I'll be standing.
• Energy conservation and naps are my friends.
• Expect I'll get "travelers stomach" and start on the daily pepto right away.
• An Air B&B has it's advantages. Like a short walk to the car and laundry facilities.
• Be kind to myself. Don't compare myself to others or even to what I used to do. 
• Be able to pivot to a DME anytime I need it. Don't try and "push through."

My mobility history

My electric wheelchair "Dory" just had her latest round of updates. She got a new battery, new battery cables, new smaller seat pan and a new cushion. During the update before that they installed the equipment needed to make her tilt on command, installed leg abductors (to help keep my knees together) and a taller headrest. As my needs change, so she changes with me. 

These changes got me thinking about my history of mobility aides and all that I've been through in just two short years. 

"Meg" was around $120

I remember the day that I knew I needed mobility help. I was with my family in IKEA and I just couldn't keep up with all the walking. Instead I went from chair to chair resting as much as I could. I felt horrible and I knew there was something seriously wrong with me. I was right! Not only did I have Metabolic Myopathy at the time, but I also had a brain tumor. 

I shared with my husband that I needed a walker with a seat and we bought "Meg" that weekend. I still use her, but mostly for watering my plants or brining things inside my house from my car on my own.

"Shirley" was around $100

I bought this wheelchair on my own for bigger outings like going to an art gallery or being out all day. I still remember it getting stuck in an antique store and my husband accidentally almost dumping me out of it. Hahah! "Shirley" sucked going over anything other than smooth cement.

She was light enough for me to push myself and almost use her light a second rollator. She also collapsed and fit in our car nicely. She wasn't comfortable to sit in for very long though and really was made to "transport" people inside their homes or a hospital.

I still have her, but I will happily give her to someone who needs a transport chair.

"Dory" was $16K (but insurance covered it)

Getting my insurance company to pay for my electric wheelchair wasn't easy. UNTIL I was diagnosed with a brain tumor, then it went pretty quick. I got my chair "Dory" one month after my brain surgery. You can see that by the time I got her I was happy to have a new tool of independence. I still remember the feeling of climbing in and taking right off. The feeling of freedom and independence!

"Arial" was $3k

"Ariel" is my travel wheelchair. At the time my company was planning a trip to Hawaii in January and I needed an electric wheelchair. I also thought my husband and I might be able to travel more in the future. She is an incredible chair for travel.

Ariel was essential for the years that we didn't have a wheelchair van. At just 55lbs both my husband and son could get it in and out of our regular car trunk. Now that we have our van "Pablo" I keep her at my Mom's house as a backup.

"Pablo" was $61K

And here is our biggest tool yet. Our wheelchair van "Pablo". Having him enables me to always use Dory. It also gives me independence where I don't need my son or husband with me all the time to get my chair in and out of the car for me. 

Dory is the only thing our insurance has covered. Being disabled is insanely expensive. I'm very grateful to have a good primary care doctor who fights for me and a husband with a good job who knows how important it is that I have the right tools. 

How Dory looks today.

Current modifications around another $30K

(covered by insurance)

Mobility Aide Review

I've had the privilege to be able to try out a lot of different mobility devices this year. Yes, I say "privilege" because they are very expensive, hard to acquire and I know they aren't an option for everyone. Knowing that I thought it might be helpful for you to hear my thoughts on each one, what I find useful and how pricy it is. That way if you can only afford one you can choose the best one for you. So here we go:

#1) Nordic Poles - Price $21-$100

My poles have rubber "walker" tips that can be removed. Under that are metal spike tips that are great for sand, dirt, gravel, etc... I used these poles when my muscle weakness first hit and at the beach. They are wonderful for walking through sand and offer extra stability. Also good for people with minor muscle weakness who just need a little extra. I've used both 1 pole and 2 poles. I preferred 1 for around town use and 2 for any "off road" walking. The plus side with poles is no one gives you a second glance. If you don't like attention with your mobility device, it's a bonus.

#2) Rollator - Price $70-$200

I love "Meg" my rollator. Mine has a seat and I bought it specifically for when I'm out and need to take a break. Seats are hard to find in shops and small towns. It's great just to be able to sit when you're standing in a long line. The down-side of a rollator is it can be hard to push, especially outside over cracks, small rocks, through gravel, etc. Like REALLY hard to push. Really REALLY REALLY hard to push. You get the idea. 

People also do stare a little bit, but not much. If you drop something, expect someone to get it for you. People hold doors open for you, etc... You'll also match the over 70 crowd, but go you for defying stereotypes! I actually had a younger woman tell me she needs one for her RA but was embarrassed to use it. But after seeing me out in mine she's going to buy one. YAY!

#3) Public Electric Shopping Carts - FREE!

Yes, I do consider these a mobility device. Most stores have them available for shoppers. They range between super slow (I'm looking at you Target) to shockingly speedy (Yay Costco!) They make shopping much easier but do come with many drawbacks. One is you're limited to what you can buy based on the size of your basket. Another is other shoppers do NOT consider them to be a mobility device. I think most people just think you're lazy if you use one. Expect others not to get out of your way, to give you judging looks and to just be somewhat jerky in general. Of course that doesn't stand for all people. Just my own experience. 

Another down side is most stores tend to forget about people using them and design their layout so it's very hard to navigate. I bump things and knock things down frequently. I also HATE the "BEEP BEEP BEEP" of backing up, so I try hard not to need to do that. Also they can move so slow that if I forget something on the other side of the store I just tend to let it go. 

#4) Transport Wheelchair - Price $70-$200

My transport chair seen here was around $130. A transport chair is a wheelchair that the person sitting in can't make go. You need someone to push you. They're very light and fold up to fit in any car (just like a walker and a rollator.) The plus side is no walking or muscle use is required for the person in the chair. The down side is they have zero control and are 100% reliant on the person pushing them. Another down is it is hard to go over transition strips, cracks and other minor hazards because of the small wheels. They do best in smooth places like malls, stores and museums. They also aren't comfortable to sit in for a very long period of time. Short term, they're great.

People don't seem to notice it as much as an electric chair. In fact it has been my experience that you become totally invisible in this thing. People will tend to talk to the person pushing you instead of you and will look at them instead of you. It's very odd and totally different then when you're in an electric chair or using a rollator.

#5) Compact, Folding, Electric Wheelchair - Price $2,000 - $5,000

The Fold and Go chair you see here is priced at $2,795. These wheelchairs are typically designed for travel. They are light (around 50-100lbs) and can fit into the trunk of any standard car. I don't own one yet, but this is next on my purchase list. 

These chairs appeal to me because of what I just mentioned, but they're also more comfortable than a transport chair if you're out all day and the person in the chair can control where they're going. That means way more independence. You also aren't reliant on a caregiver, so you can use it when solo. IF you can get it in and out of the car alone. Some insurance companies cover these chairs, but mine does not. Bummer. 

#6) Traditional Electric Wheelchair - Price $5,000 - $30,000

This is a picture of my chair and the receipt states it was $16,000. Luckily for me, my insurance company agreed it was needed and covered the cost for me. The up-side of this kind of chair is it is very comfortable, I have complete control and don't need help to use it, it is heavy duty and able to go all day, it has 6 wheels and feels very stable, it has strong shocks and doesn't hurt going over doorways, cracks, rocks, bumps, etc...

The down side of this chair (other than cost) is size and weight. It weighs just under 300lbs and is too heavy for my Kia Soul. That means I either am relying on public transportation, or I have to get a new car to use it. Luckily I happen to live very close to our downtown and can get around locally without driving. BUT that hugely limits where I can use it. Which is why my next purchase will be a Fold and Go. The other down side is it took me 3 months to get this chair through my insurance. I think that was actually very fast. Like a car there's also maintenance that the chair requires annually. 

People WILL stare, look, nod, gaze and in general notice when you use this big beast. But as my husband said "I've never seen people be so... nice!" It's true. Everyone will be nice to you, stop for you, hold doors for you, let you pet their dog, etc. VERY different experience than the poles or an electric shopping cart. If you're into psychology it will be a fascinating experience for you. You also are up a bit higher than the transport chair (which is exactly butt level.) So if having everyone's butts in your face holds no appeal, this chair is a major improvement. 

As my muscle weakness has progressed so have my tools that I use. Also as I go through the day my muscles gas out and I need more and more support. So yesterday I went from walking to using my rollator to using my transport chair at the last 2 stores we visited. At times like that I really miss my electric chair. I really don't like the transport chair, but need to listen to my body. I'm looking forward to having an electric chair that will fit in my car and I can use out and about when not in our town.

Hope this little run-down helped you! 

Next Step Tools

I've already shared that I've been struggling with muscle weakness for 4 months now. It came on suddenly about 1 month into taking Plaquenil. We don't know what caused it yet, or even what to do to help. It could have been a rare side effect from the Plaquenil or it could be unrelated and caused by something else. After endless research (and no help from my rheumatologist) the best I can figure is it's some kind of Inflammatory Myopathy. Possibly. Maybe. Could be. Or not. 

So good. You're all caught up. My muscles suddenly went out on me and my stamina sucks. Overall weaker muscles and they wear out very quickly. I'm not one to just sit at home and sob (at least not for long), so I've taught myself all there is to know about the world of adaptive mobility.

For some extra stability or medium length walks I use these Nordic Pole walking sticks. I don't use them often. But when I need them they super come in handy! Like at the beach last Friday. 

I can go about a block or 1 small store on my own power. After that I use "Meg" (my Rollator.) She's fantastic and has been a real life saver. I can go much further much longer with Meg then I would have. She keeps me out and ready for adventure. At least for about 2 more stops, or 1 medium store. Then I need to be done for the day, even with Meg. 

With lack of solutions coming from my doctors and this muscle weakness going nowhere I needed to take the next step. I don't want to be tired, even with Meg and call my adventure short. Being out and enjoying life is very important to myself AND my husband. So when even Meg isn't enough to keep an adventure girl going... I needed to look at using a chair.

I already spoke to my health insurance provider and talked about our wheelchair coverage. Now I have a "wheelchair assessment" appointment with my primary care doctor in two weeks. That's the next step to getting my own electric chair that I can use pain-free.

But in the meantime...

I'd like to introduce you to Shirley (surely actually... as in "Surely You Jest!" As in Surely you jest that I need a chair!") Humor is important. Shirley is a "Transport Chair." A transport chair is a wheelchair that always requires someone to push you in. See how she has petite 8 inch wheels? That's because I can't use hand powered chairs with my "hurty paws." A transport chair is also very light weight, can fold up for easy travel and is easier to push than a hand propelled conventional wheelchair. I'm hoping it's perfect for our adventures!

As of now I don't need it all the time. Or even half of the time. But I will feel much better having it in the back of my car just in case. You know... so the adventures can continue!

Use Those Tools!

I wear glasses so that I can see clearly. I use a fork so I don't get food all over my hands. I use a car so I can go long distances easily. I use a helmet to protect my brain when I ride my bike. So then why is it so hard to use a mobility device?

Me & "Meg" shopping in style

I'll tell you why. STIGMA.

I tell myself that I don't care what other people think. And that's true. But there's still a small part of me that whispers "You've given up" every time I use a mobility aide. "You should be trying harder. You don't NEED this. You can do it without it. You're being lazy." These are all things a hideous little voice mutters in my head when I grab Meg, or a scooter cart. 

I'm not really sure where it came from. I'm thinking it could be the "voice of my culture." That what I'm really hearing are my projected potential thoughts of other people who see me using these devices. Add to that the fact that I'm a larger woman and I could even hear "It's because she's fat." Isn't that awful? I don't want to listen to those voices.

Here's what I want:

• To keep active and do as much as I can.
• To be a role model for others with illnesses to use the tools available to them.
• To break stereotypes and challenge the norms (like walkers are for old people.)
• To build my strength by walking as much as I can, even with my tools. (Rather than staying home and being sedentary.)

I could just stay home, feel sorry for myself and not go out at all. Or I could try to not use my tools, do a lot less and make myself feel worse in the process. There's always options. I chose to modify how much I do and how I do it to keep on being as active as possible.

I noticed an interesting added benefit. My condition isn't invisible when I'm out with Meg. She's a big shining beacon that says "HEY! There's something up with this beautiful woman and she needs a little help getting around!" 

People are nicer to me. They don't sigh loudly behind me if I'm going slow. They don't clear their throat as I'm trying to open a door. They get the door for me. They tell me to "have a nice day" and compliment my scarf. 

I was prepared for people to ask nosy questions, or to be really judgy and rude to me when I use Meg. But instead the opposite has been happening. That was a real surprise to me. People have patience and understanding around me that they never had when I didn't use mobility devices. We respond to what we can see. Makes sense, right?

I'm sure over time those annoying negative messages in my head will go away. I know it stems from my own fears of judgement that (so far) are completely unwarranted. It also comes from not being super trusting of other people. Another challenge that I'm working on.

I also learned another cool thing about using Meg. When I sit in her and wrap my arm around my husband's waist, my head hits him at a perfect, snuggly, cozy spot. It was a lovely surprising discovery. I'm sure there's more where that came from.

Better with Bling

I'm a big believer that all things are better with some bling. 

"Meg," my new Rollator is no exception to that rule.

I went to a local craft store today and found these rhinestone stickers. I put them over her screws to make them pretty. I also found this mermaid scale pattern duck tape. 

There are some tags on her that I was told not to remove. They didn't say anything about covering them up with mermaid scales. They really need to be more specific about such rules.

I think she looks beautiful! 

I also ordered these hooks today. They're meant for strollers, but will work great for my purpose!

I realized I have 3 purses with sturdy metal side rings meant for attaching an optional arm strap. Instead I can clip them onto the front bar of Meg for when I'm out on the town. I like the purple ones a lot.

It's important to not only have the right tools that you need, but to also feel good about how they look. Like a lovely pair of glasses on a beautiful face, customizing my tools is a real mood lifter.

Mobility Help - Part 2

Yesterday was a big day. My husband and I went out and bought my first Rollator. I named her "MEG."

Me and Meg hanging out together yesterday.

She's a 16lb light weight, foldable Rollator. I like the fabric back better than a padded bar. The seat is also padded. You can see in the above picture that you can fold it up when walking to give you more leg room. I have long legs, so that's great! She's also plenty wide for my ample backside and very comfortable for sitting in (the main reason I got her.) 

MEG

She's VERY easy to push, so at least for now I don't think I have to worry about my arms and hands being over fatigued. I have a physical therapy appointment this Friday. I'll bring her with me to make sure I'm using her in the most ergonomic way. 

She's also a beautiful blue/grey color (like a shark) which is also where she gets her name from.

I'm VERY excited to see this new shark movie "Meg."

I ended up just buying one instead of renting. In my area renting one was about $50 a week, but buying was less than $200. If I was pretty sure I was going to need it longer than a week it seemed foolish to flush a quarter of the cost of buying on a rental. Also the ones available for rent were small and not in great shape. It was very helpful for me to go and see them in person and try them out to really know what features and size would work best for my needs. That's the down side to buying online (even though there are some really cute ones online!)

When I got her home I cleaned her off (she was a floor model and caught my eye right when I walked in the door of the medical supply store.) She was pretty, tall and had a cushy bottom... JUST LIKE ME!

My tricked out ride

She didn't come with a basket or under-storage because then the seat couldn't flip up for walking. I could have added one, but I found something even better. One of my favorite bags that's sturdy and made out of seat belts attached perfectly to the front bar. I can even still fold it flat with the bag still attached. I might try and find some thick carabiners or hooks instead of the strap, but for now it works great. 

Here's how I knew it was time to get some mobility help:

1. I would say "THANK GOD" when I would find a chair I could take a break in while out shopping. Loudly. Every... time...
2. I was avoiding stores because of their size.
3. I was waiting in the car while my husband went into a store because I was too tired and they wouldn't have anywhere for me to sit and rest if I needed it.
4. I would get anxious and upset about a place not having chairs, or when I couldn't find a chair I could sit in.
5. I would push myself to walk till I wanted to cry (then I'd cry at home or in my car.)
6. I would see a long line and cringe (or leave without buying what I came for.)
7. I was changing plans to avoid walking too long.
8. I would be happy and grateful to sit on the window sill of a shop (not that my butt fit, but it was better than nothing.) 
9. I wanted to yell at someone if they got to a public seat before I could (ummm, it's not MY seat! I have to share.)
10. I was limiting how much I could buy per shopping trip because I didn't have the stamina to make it in the store for very long without taking a break.

My new kitchen stool arrived yesterday too! My husband already put it together for me and I used it last night while we were cooking dinner. It's fantastic. I feel all ready to go now.

Fantastic kitchen helper

I'm still working out every day and trying to watch what I eat. I'm determined to help myself out as much as I can. 

So far my needs/ability looks like this:

• Around the house, small store, around the block or 1 errand - I can walk alone. 
• Really big store (like Ikea), multiple errands, standing for a long time (like in a line) - I need Meg.
• Huge store (like mall), big store after exercising or large place (like the zoo, downtown or a big park) - Meg, or I'll need mobile help like renting a scooter or wheelchair.

I am going to talk to my doctor and check with my health insurance company to see if they'll reimburse me for some of the cost of Meg (or better yet, ALL!) But even if they don't it was very worth it. 

Just the 1 store we went to after I bought her was a great experience. Before Meg I would have just sat in the car and waited for my husband while he went in alone (or pushed myself and been in pain and miserable.) But this time I went in with him and just sat down when I got tired. He kept looking and I was close by. It was great! I had zero stress too about if the line was going to be long or that they didn't have a chair. It was one of those "I didn't quite realize how bad things had gotten till I had what I really needed" moments.

Reminder to self: Don't let things go. Get the tools you need when you need them. 

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.