LindsayMy birthday was a couple weeks ago, so while I’m appreciative, you can skip the obligatory “happy birthday” comments. Just send money instead.
Each year I like to buy myself a small gift for my birthday. I find it helps ease the pain of growing old. Past self-gifts have included little trinkets, a sweet treat, or – back in my younger “broke” days – the “expensive beer”, which typically meant anything other than Keystone Light.
This year I thought I deserved something a little nicer. Since 35 was a tough year for me, I wanted to pick out something special that would help set a positive tone for my 36th year. So, this year for my birthday, I bought myself a set of new wheels.
After a particularly difficult DMV visit a couple of weeks ago involving a major POTS flare, I began to face the depressing realization that my health is declining, and I’m losing some independence. I have reached the point where I can no longer wait in line for a latte at the local coffee shop. I’m realizing I may someday need a wheelchair for outings that require standing for more than a couple minutes, but emotionally, I’m not ready for that yet.
God, I’m not ready for that.
You may not be able to tell from the photo, but my new walker has a seat.  Not only does it help my balance, but this way I always have a place to sit down no matter where I go. I’m hoping it will provide a little more freedom and independence, but I have to admit, this is the most depressing birthday gift I have ever purchased. Even after having this illness for about 5 years, I still don’t know how to deal with shit like this.
When did this become my life?
I haven’t taken the new wheels for a spin out in public yet, and I know the first time I will be mortified. I know I shouldn’t be, and I know illness should never be embarrassing. I have advised enough people about owning our illnesses and embracing our weaknesses and telling the rest of the world to fuck off to know that I cannot control how the world responds. All I can do is pimp out my new ride with some fuzzy dice and this bumper sticker:
“I can be changed by what happens to me. But I refuse to be reduced by it. – Maya Angelou
Smell ya later.
– Linds
It is so sad that you are ‘splurging’ on a piece of medical equipment that is essential for your quality of life. Dictator Claire will definitely be including mobility devices in her free healthcare for all policy. PS, if you have any spare minions, send them my way – world domination requires a surprising amount of manpower.
awesome! maybe Dictator Claire could also get rid of all the idiot doctors 🙂
There are just so many of them!
Its the comp!exity of illness that makes the Dr appear to be idiots….this is what I keep telling myself. I am thinking about having oxygen on hand….but the thought is so depressing.
I have to have oxygen on hand. It seems kind of strange because they gave me so much, but they don’t want you to run out I guess. They gave me an electric pump…the only thing I’ve ever used, then they gave me a big tank…incase the electricity is out…then little tanks..which aren’t so little, to take with me. Well these things really aren’t easy to take with me, I’m going to look into a mini battery operated tank….but I don’t know if my insurance will pay for it.
When I need it, I need it right then. but I don’t take the tanks with me. It’s dangerous. especially in my VW Bug.
I have it for Cluster Headaches, it stops them immediately. If I don’t have it….well they don’t call those headaches suicide headaches for nothing.
If we need it. we need it.
To hell with what people think!
I’m sick of worrying about it.
If it means the difference of me staying at home hovering in a corner and me going out….I’m going to use my walker or wheel chair…depending on the day, and my oxygen, and anything else I have to. I’m stuck at home clutching the bed or chair or my husband enough. At least then people know I’m sick and don’t wonder…”why is that woman acting so weird? Is she on drugs or something??”
I just had to get that out.
you’re so right – if we need it, we should use it! as much as i hate using a walker/wheelchair, i love that it has allowed me to do something i otherwise wouldn’t be able to!
Argh! I am sorry you had to use your birthday gift purchase on a walker. I hope it gives you back some independence.
I have considered one. Despite, like you, advocating for not being embarrassed by illness, I was embarrassed by the wheelchair at first. I even asked my husband if he was embarrassed to be seen with me in it. He assured me that was crazy talk. That was a few years ago. These days, I don’t think twice about using it as needed because it makes such a difference.
I have declined from my wedding. Post exertion payback on steroids.
Could the decline be related to the medication you have gone off of?
the last medication i stopped was almost two years ago. i’ve played around with the dosage of some, and i’m sure that’s not helping, but i think my decline, like yours, is probably caused by too much going on this past year (including the wedding & honeymoon)!
Wow am I off on timelines! My brain was totally convinced you had been weaning of meds like… really recently. Silly brain.
i did try to get off about 8 months ago, but it didn’t go well and i decided to worry about it after the wedding, so i never fully stopped the meds. so, your brain is mostly right 🙂
I have to laugh, because I asked my husband he same thing about him being embarrassed to be with me out in public in a wheelchair, and you know what he said? The exact same thing your husband did, lol. “Crazy talk!”
it sounds like you both have amazing husbands!!
Rock it! You’re only 36 once, right? This definitely isn’t the typical ride for a 36 year old but you have more grace and dignity then many a 36 year old. Look to your Angelou quote because this illness doesn’t define you. People at Starbucks and the DMV can go to hell. Who cares about them anyway?
thanks, friend!
Darn it I guess I didn’t post it properly.
I hope you will ask ur insurance if they cover medical equipment. They probably do… And you should ask for a reimbursement if not go through proper channels. Your doc probably doesn’t know… Ours didn’t. It is a prescription through the medical NETWORK and not a pharmacy prescription. Call your insurance and ask. We got a bath chair and a wheel chair (reclining wheelchair) btw through our insurance through Life Care Solutions in San Diego.
Then you can splurge on a birthday gift for you!!! 😉
thank you for the comment! my doctor did offer to write a script for it. my insurance will cover some medical equipment, but i still have to pay about 40% of the cost. naturally, the equipment my insurance covers is the more expensive ones, so what i paid for the walker (from amazon) is still less than my share of an insurance-approved walker.
Lame!! Any chance they will reimburse you the 60%? You probably already asked… Ugh.
Xoxo
i hope so! i’m undergoing that process now. fortunately i paid a reasonable price for the walker, but i wouldn’t mind some money back from the insurance company!
I am so sorry to hear of you suffering. Being ill can be a living nightmare. I am suffering from a similar illness CFS and it has taken so much from me , my job, my figure, my social life, my wedding day and most importantly pizza and alcohol!!! I am starting to follow a new treatment plan and hoping it will help. I am blogging about it if you want to see how it works. It may help you too?! theantidoctor.wordpress.com xxx
I am so sorry to hear of your suffering. Being ill can be a living nightmare. I am suffering from a similar illness CFS and it has taken so much from me , my job, my figure, my social life, my wedding day and most importantly pizza and alcohol!!! I am starting to follow a new treatment plan and hoping it will help. I am blogging about it if you want to see how it works. It may help you too?! theantidoctor.wordpress.com xxx
I have a walker and a wheelchair. I’ve been using them when I go out for the past two years. Yep… Still hate them. But when I realize the alternative is never leaving the house again, or crawling around on the ground and drawing even more attention to myself when out in public, I sit in my chair and pout.
But I hear you. It sucks.
it does suck. but, i’m hoping i may be able to go places now that i have the walker that i couldn’t before.
Exactly! That’s the spirit. 🙂
Happy Birthday Linds! 🎂🎉🎈
I might be a little late!!
I have a wheeled walker with a seat and “trunk” (little basket under the seat) that I don’t have to haul out that much (I seldom leave home), but it’s great to have if I need it. Sometimes, the grocery store cart is enough to give me support. If I’m having a bad enough day that I think I’ll need the walker, I stay home. My life has become what happens in my apartment, and the rare trip to the grocery store, or MD appointment. I’ve had to find hobbies and activities that don’t require going out. It’s a LOT different than my old life- but it’s still better than being paralyzed or in a coma or nursing home. :/ You’re right to look at what the walker will allow you to do- not just grieve what your body won’t do like it used to.
Do not feel bad! My birthday gift was a bath chair, at 32 years old. lol
I have a walker with a seat too..used too never bother me, helped me be more independent. ..cool.
Recently, it has started bothering me.
Maybe because I still feel I need help even with it? Maybe I’m just overwhelmed lately adding more and more to my list of illnesses. No matter.
I am glad I do have a walker that can help. And mine is kinda cool. Haha.
I had a happy frigging birthday too…I had vertigo for over 48 hours, was clinging to a chair the whole time. We can pick a day and have an unbirthday mad hatter teaparty. I could use a new hat.