Bright Side

I was thinking the other day about all the things I do now that I wouldn't be able to do if I were working full time. I came up with quite a comprehensive list. I found it incredibly helpful for my mental health to do this. I still miss working and all that came with it. The identity, the respect, contributing financially to my family, helping my community in a meaningful way...

It's one thing to have my family tell me how helpful and useful I am even though I can't work right now. But it's completely different to work through those feelings on my own.

Now I have time to:

• Fight for my medical supplies (my wheelchair, CPAP machine, etc.) This always takes a ton of time and was incredibly hard to do while working full time.
• Attend needed medical appointments and therapies.
• Spend more time in nature. 
  
  
  
• Create things and express my creative side. 
  
• Process the loss of my partial mobility. Mentally and emotionally.
• Be there to help my son. 
• Spend time getting to know my mother and who she is right now.
• Investing time and spoons into our home and garden. 
  
• Spend more time with my puppy and enjoy her last days with her. 
  
• Be available 100% for my husband. Hearing about his work and being more a part of his day.
• Being able to invest more time on my body and health. 
  
  
  

Why I love my wheelchair

I used to feel bad for people "in a wheelchair". When I was a healthy, able bodied person I had that common thought that people were "confined to" or "trapped by" their chairs. But as my mobility and strength worsened and I had to start to use mobility aides myself, I began to realize what I think all disabled people already knew all along. None of these tools are traps. None of them are confining or something to be pitied. For me they all represent freedom. Especially my wheelchair.

My mother was commenting the other day how I've always done things fast. Walk fast, eat fast, finish tasks fast, clean fast... That's very true. My son and I both walk very fast and have very long legs. My husband (whose the shortest one in the family) was constantly struggling to keep up. Until my mobility became a challenge. Then of course everyone was waiting on me. My chair gave me back that sense of freedom and independence, but it also gave me something else. SPEED!

I didn't even realize "going fast" was at all something I was missing. My husband will confirm that I used to not enjoy going for walks because it was too slow of a mode of transportation for me. I still remember the first time I sat in my chair and zipped down the street that thrill that I had in my chest. It was the same feeling as a little kid zooming downhill on their bike. And every time I'm alone and get to go fast in my chair out in nature I feel that same thrill.

For me my chair means independence. It's a physical extension of my body. It's nothing I'm "confined to" but rather something I'm fortunate to have! That's also why I like to name my mobility tools. Because to me they're much more than tools. They're blessings.

First Day Working in a Wheelchair

Despite having the Chief of Staff as my personal Neurologist from a world class health organization, my suspected Mitochondrial Myopathy remains un-daunted in her course of destruction. I've been trying different coenzymes and amino acids along with electrolyte water, but so far there's no difference.

Last Thursday I pushed my walking abilities a too far and feel like I never recovered from it. My legs feel much worse. Monday at work I "pushed through it" like stubborn people seem to do much too often. Tuesday I used "Meg" my wonderful rollator. But by Wednesday even she wasn't cutting it. The big problem in my office isn't really getting from A to B. It's all the chatting that seems to happen between or at those points. In my job that "chatting" is really important, but it's physical torture. Sure I can sit on Meg when someone starts to talk to me, but then I'm up again to finish what I was doing. Then all the sitting, pushing and getting up and down is just too much for my poor muscles.

Wednesday was hard for me. Wednesday night I came home and had a good cry. I was angry that my neurologist hasn't gotten back to me, angry that my medications aren't helping, angry that now my eye muscles seem to be straining and weakening, angry that I felt like I wouldn't be ok at work unless I used my chair. And frustrated. And upset. And sad. And...

(Smile girl!)

I told my husband that every single aspect of my life is now not only affected by my health struggles, but I have to think about it every second of every day. "Can I stand that long? Can I walk that far? Can I fit through there? Is it accessible?" From work to shopping to "fun" outings to sex there isn't one part of my life that isn't now touched by this. And it sucks. And I'm mad. 

I actually don't take comfort in knowing there are 650 million people in the world with disabilities. I wouldn't wish this on anyone. Our world is not made for us. For the "different." As anyone with Autism or who is a Little Person can tell you. We are a "one size fits all" culture and that size better also be 100% healthy and move on 2 legs. It's makes no sense. 

But now for some some positives. I'm very fortunate that where I work is super supportive and the office is about 95% accessible. Also the job I do I can do without any modifications at all from a wheelchair. No problem-o. My clients did look surprised and asked if I was "ok" but I'm pretty used to that from pushing Meg around. I also welcome questions and am very open. So Thursday Ariel came to work with me. And like every time I finally use my mobility devices, my life became worlds easier. I was in much less pain and my muscles thanked me for using my brain and my tools. 

My plan is to get Dory to my office (somehow) over the weekend and leave her there. She will then become my "work chair" and Ariel will be my home and "out and about" chair. It will work great if I can just get her there. I know Uber does have wheelchair service, but might not in my area. The public bus is my last resort simply because that will be super stressful and I've never done it in a chair before. 

I'm convinced life is nothing but a series of unpredictable events. You can make plans and think you know what's going on, but she likes surprises! I'm just trying to be mindful and focus on each day as it comes and what I need that day to enjoy it as much as I can. 

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. 

My new travel wheelchair

Ariel, my new Fold and Go electric wheelchair, arrived yesterday. As you can see I was a bit excited to try her out for the first time.

So excited in fact that I didn't even bother to put shoes on. She's smaller than my other chair, but can fold right up and go in my car. At 55lbs my husband can get it in and out, but we're still trying to figure out a way that I can do it myself. There was once a time where I don't think that would have been an issue, so that's a bit frustrating. However, I'm an expert problem solver and I know I'll come up with something.

I also sprung for the travel protection bag and cup holder. Ariel and I are going places baby! She'll be coming with me to Hawaii in January and possibly Phoenix in April. That is if my doctors still haven't "fixed" my muscle weakness issues. 

I'm excited to have her and will take some better pictures later.

I RECEIVED NO INCENTIVE OR KICK-BACK FROM FOLD AND GO TO WRITE ABOUT THEIR PRODUCT. (But I wouldn't say no if they wanted to give me some free loot.) 

You may be wondering why all my mobility devices have aquatic themed names? The reason is two fold.

1. I love the ocean, sharks, mermaids and all the creatures in the sea. Growing up in California I've always been an ocean loving girl.
   
2. Losing the use of my leg muscles made me relate even more to all things that can swim. Ariel is a mermaid who (duh!) has a tail instead of legs. The more I lose my ability to walk for very far, the more I think of myself as just turning into a mermaid. It's a mental health trick that works great for me. I still love the water and love to swim. So there you go! 

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! 

A Lot to Learn

I've spent most of this weekend getting to know how to use my new electric wheelchair. I decided to name her Dori after the Greek sea Goddess. Also if you spell it Dory then it's from a famous Disney fish who likes to sing "Just Keep Swimming" which is a great motto.

My husband has been out walking next to me while I'm rolling. We even figured out how to hold hands! Most impressive. So far the hardest thing has been managing big curbs. My wheels either spin, or a I go too fast and give my husband a minor heart attack. YouTube videos have been helpful for me. The dude who dropped my chair off and adjusted it for me told me to go at a big curb at an angle, but the manual said to never do that. YouTube seems to agree with the manual and tell you to go at it straight. So much to learn!

I'm a busy bee

I also am practicing opening doors and maneuvering through small shops. That's going really well, though people keep trying to open doors for me while I'm practicing. In fact, people have been especially nice while I'm in my chair. That's something I noticed when using Meg (my rollator) as well, but not quite to this extent. 

I told my husband that if you use a store electric cart people can be down right rude. But use a mobility device that's yours, then they change their tune. And apparently the more disabled you appear to them the nicer they are. Why can't we all just be nice to everyone all the time despite health and mobility problems?

One of the things I love best about Dori is that I'm no longer at butt level with people like I was with Shirley. It's just a bit higher where my eyes are more at the small of their backs. That's an unexpected perk and comes in very handy in crowded places like our Farmers Market.

I still don't have any way to transport Dori other than to use her around town. I need to look into our bus system and van system for chair users in our town. I'm also waiting for my new blue tag for my car. My temporary red one expires in 7 days and I'm starting to feel a bit anxious about it. 

Buzz buzz, so much to do!

My Hopes Are HIGH!

I got some awesome sauce news just now. (My doctor puts the "awesome" in the sauce.) 

"I received the wheelchair evaluation from physical therapy and will send you a copy in the mail. Please send me the information on the electric wheelchair and I will complete order.
Sincerely,
Your Awesome Doctor"

Ok, I might have added that signature. But it's not like I'm sharing his name with the world! Then you'll all want him and he'll be too booked to see me. I'm selfish like that. Don't like to share. Only child and all that jazz.

With any luck in a few months this little baby will be mine.

It's a "Fold and Go"

"But why this particular chair?" You may be asking. Well... The company is headed by a woman with RA who couldn't find a good electric chair to fit her needs, so she made one! Then turned it into a company. Let's start there. Also it's much lighter than other electric chairs (about 50 lbs) and folds down to fit in a regular car trunk. No van or hitch required. This baby is made for adventure! It can take inclines and bad weather like few other chairs can, especially in that price range.

I'm also not a... um... "petite" young thing and this chair is made for someone my size. YAY! Let the adventures begin!

Also in "big news this week" I ordered my first medical ID bracelet. It's something that's been in the back of my mind for a while, but my muscle weakness seemed to have taken a turn for the worse this week and that spurred me into action.

After a ton of searching I settled on this.

Pretty, but still looks like what it is. That was important to me.

Don't want to ERT to just think it's jewelry!

My job can be a bit risky. I work with a lot of different people and unpredictable situations can happen. Also I don't trust my own body right now AND I love to travel. So I thought it would be best to err on the side of caution and be prepared.

I know some people just use the Emergency ID Card on their smart phones. But honestly I don't think the ERT is going to be checking my phone while I'm laying unconscious from a bad fall or crisis. Nothing wrong with going old school when it comes to your health and treatment.

I had mine engraved with:

Muscle Weakness

Mobility Issues

RA/Asthma/PNP

ICE: husband's phone number

Did you know that ICE means "In Case of Emergency?" I saw it on a lot of medical sites and never knew what it meant. You're welcome. Also PNP means "Peripheral Neuropathy." I also had to look that up because the whole word wouldn't fit. 

Now if I tumble and conk my melon the responders will know why. Although nothing on my bracelet is life or death information like it is for some people, it's also important for anyone trying to help me to know if I'm in a situation where I can't speak for myself. 

My fingers are crossed for the wheelchair being approved with my insurance. It feels a bit like a message in a bottle that just got launched.

We Have Progress People!

At least it FEELS like progress, which is just as important. Also an important lesson, it's ok to cry in front of your providers. It lets them know in a real way how serious this is to you. Smiling and grinning through each appointment isn't always what's best, helpful or required.

Today was my appointment with my primary care doctor to be evaluated for an electric wheelchair. I came prepared (as usual) with my 1 page list of my symptoms related to "muscle weakness and fatigue" and a timeline of when it started and relevant dates (like when I started using mobility devices, etc...) I thought it was brilliant and helpful, but once again it was hardly glanced at. In my opinion this speaks more to how little time doctors have to spend with each patient rather than the quality of care they provide. 

Because I can walk more than 50 feet without any help (my max is about 200 feet right now) he feels I may not qualify for an electric chair. That's ok. I feel I have to try. The next step is to get ANOTHER assessment from a physical therapist. Oddly enough my doctor wasn't sure what that will entail, so I'll have to look it up (because Google knows everything!)

My husband went with me and was (again, as usual) SUPER helpful! Hearing him talk about how hard and scary this is and how neurology never responded to my messages made me tear up. I was glad to have him there to help advocate for me and stress that THIS IS SCARY! My doctor was very sympathetic and moved into "Super Doctor Action Mode" immediately.

He sent a message directly to Neurology for me and assigned us to a "Ambulatory Case Manager." He said they're like a patient advocate for complex cases when more than 1 specialist is involved. Sounds great to me! He urged us to be patient and hold out for my slew of appointments at the end of September. Then if those don't yield results he'll send me to a different neuro specialist. Wheeeee! More testing and appointments! But if it helps get results and answer questions it will be worth it.

I read a lot about other people battling complex RA or autoimmune problems where it takes them years and years (like 10 years) to get a diagnosis and some help. Out of everything that has happened to me over the last 3 years I'd say I'm most shocked by how rudimentary our medical system still is. It's just a lot of "wait and see, test and check, trial and error" and I really thought we were more advanced than that. 

It's easy to want to give in to frustration and anger, but I'm trying to see all the people I have helping me and looking out for me and focus instead on this feeling of being cared for that my doctor gave me today. For that I'm grateful.

When Your Legs Don't Work... Become a MERMAID!

Today I'm a mermaid

I've always loved mermaids, but since I started having my major muscle weakness and fatigue I've been even more captivated. I like to think of myself as a transformed mermaid whose human body is failing, but who can still swim just like she used to. That's a more comforting thought than a "chronically ill middle aged woman." I mean who wouldn't rather be a land-locked mermaid? Health is all about your frame of mind and your spirit.

So "Shirley" finally came and my husband and I took her out for a spin. He had the great idea of going to a local art gallery. The floors were flat and smooth and it was a big safe space to try out the transport chair for this first time. He did fantastic! Applause all around. Not one tip or bang. 

The #1 thing I noticed was that this was the first time I can remember in a very long time doing anything outside of the house that didn't leave me completely exhausted and needing a big nap. It was a strange sensation to have been all through the museum, but to NOT be totally out of spoons. So yeah, that was amazing and a huge relief.

Me & Shirley enjoying some underwater art.

You know... Cause I'm a mermaid!

So now in the back of my car I have my Nordic Poles (I don't know why I didn't name them? Maybe because I don't use them much.) Meg my Rollator and Shirley my transport wheelchair. I keep them in my car because I never know which I'll need when I'm out and I like to use the least assistive device that I can to keep my body strong. 

This Friday I'll be seeing my primary care doctor for my first official "wheelchair evaluation." I'm hoping to get an electric chair for when we're off on big adventures or on vacation. It would be better for inclines or off roading than a transport chair and it would also be something I can drive myself. I don't mind relying on my husband for smaller day-adventures, but for a longer vacation I'd need more independence. 

My wonderful doctor has also taken over my Lyrica Rx because I never did hear anything back from Neurology. That's more than a little frustrating. "Unacceptable" is the word my husband used and I have to agree. 

As much as I'm enjoying work that's also proving to be a struggle. Mornings are hard (even though I do my best to make them as easy as possible for myself) and I'm often out of spoons before I even leave the house. It's fatigue that's the hardest. The Cymbalta and Lyrica are doing a good job controlling my joint pain, gelling and neuropathy. Though I also take stretch breaks and do my best to keep as active as possible.

I'm thankful to still only be working 2 days a week because come Wednesday I need to rest most of the day. Too bad I can't just swim around all day looking for pearls like a REAL mermaid does!

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.

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.