It has been a wild ride lately with my health and some new therapies, as well as some experiences I’ve had – along with my Ginny – as I’ve recently gotten to experience life as a significantly disabled person in my smartchair.
There are several things I want to share.
First, “New” Old Treatments
In the past week, I’ve been able *somewhat* able to walk again, owing to an order from my doctor for a month-long massive course of prednisone.
That’s right. Prednisone.
The drug responsible for so many side effects, so much weight gain, all seven fractures in my feet. . .
When my Rheumatologist said that the only thing that might arrest my CRPS flare that was heading into month two when I saw him was increasing my prednisone dosage to a much higher level for a month, I nearly lost it. I had worked SO hard to reduce my dose – and it was so painful to do so. The weight had finally begun coming off slowly. An increase – especially a significant one – was the LAST thing I wanted to consider.
BUT – I couldn’t walk.
And the pain was unrelenting.
So there was nothing else to do.
He sent in the prescription. And I picked it up on the way home.
Of course, I also did some research on my own. Sure enough, CRPS can respond to high dose pred.
Within a few days, I was able to stand on my left foot again and do some moderate walking after having been unable to really use it for so long.
Now, having been on the increased dose for a full week, I still have to deal with some significant pain at times – and that may well just BE at this point – BUT being able to walk SOME even is amazing. Today I was able to cook a simple lunch in my kitchen – I love to cook and haven’t been able to for these two months – and I was so excited.
While I absolutely hate the negatives that come with the increased dosage – even more moon face, puffiness, weight gain – I am deeply grateful for these improvements. My rheumy told me that I would not get a “cure” from the pred but would hopefully get some improved function and I am so thankful that has happened. ❤
Still, I will have to use my smartchair for any significant distances, as my left foot just can’t tolerate them yet – and I am grateful to have it.
However, as I was in it through all of our trip to Montreal, Ginny and I quickly learned how differently I was treated in it.
- We consistently noted that people would direct their questions that were for me to Ginny. For example, she was asked repeatedly, “Can she walk?” with me sitting right there. This was both offensive and incredibly difficult to take in, as someone who is possessed of my faculties and obviously completely capable of speaking for myself.
- Regardless of whether or not I could EVER walk, the idea that I was not able to answer for myself really rattled me, but it got even more ridiculous when someone told Ginny in the elevator of our hotel, “Her tattoos are really pretty.” Really? Thanks, I guess.
- Even CUSTOMS questioned Ginny thoroughly – but didn’t bother to ask me a single question.
This is all apart from the looks of pity that I don’t think I will ever adjust to when I have to use Mervin.
That is a whole separate post for another day. . .
For now, I’ll just remind everyone to be aware of this so that you don’t accidentally treat someone else this way. It really feels like shit. There is no other way to say it – and I’m sure no one who did it meant to.
So be conscious.
People in wheelchairs are just people too. ❤
And Then There’s The Food Allergy Life.
Added to our mix of trying to navigate a new place whilst chairing it was locating gluten free food as well. We got the hang of it by the end of our trip – but it was interesting for a bit. There were some tears – as I felt that trying to get me around and feed me was just TOO MUCH at one point (Ginny should be the first human canonized whilst still among the living – really) – but we did, in fact, survive, find nourishment, and have a wonderful time after all.
Some tips discovered for eating whilst allergic/celiac/diabetic/hangry in new places:
- Locate a grocery store when you arrive to stock up on appropriate foods for yourself in a crunch. String cheese breakfast saved us on few days.
- Think ethnic food. We found the BEST GF noodles I’ve ever eaten in Chinatown in Montreal.
- Our room didn’t have a kitchenette – but it was so fabulous that it was worth it. Still, if possible, especially for a longer stay, a place with one will make eating less expensive and simpler as well.
- Use Uber Eats – and not just to order food. One trick we discovered late in our trip was to utilize the Uber Eats app to look through the GF offerings of all the local restaurants. It was a great help to us. So, upon arrival, I would suggest you enter your address and you can search the GF offerings – or veggie or whatever your food needs are. It will make things SO much easier for you.
- If you are a food allergic type, be prepared for the fact that your GI system may still revolt, even if you eat NOTHING you are allergic to. Eating all manner of different foods just does that. Accept, surrender, roll with it.
And, then, upon my return home, there was this. . .
Service Dog Issues
I didn’t attempt to travel with Henry – and missed him terribly (terribly, terribly) – but I did have some MAJOR issues with a security guard at the Riverchase Galleria when it came to having him there and the regulations once I was back.
I am aware of the issues surrounding “fake service dogs” that are being reported on now – but I have a doctor’s order for Henry’s services – and I do need him. I was reminded just how much at times when I DIDN’T have him.
Anyway, he and I were at the Cookie Company in the center of the mall waiting on a drink to take my medication when “Officer Lejurne” approached us and asked if Henry was an ESA and then told us, despite my MD order, that we had to leave.
The “Officer” and his partner then proceeded to follow us all the way through the mall and to our car – like criminals.
I. Have. Never.
Henry has been there many, many times – with no issue. And he had just left the eye doctor, where we had scheduled cataract surgery – and she said he is one of the best doggies she has ever had.
There was NO reason for this.
AND IT IS ILLEGAL.
Needless to say, I’m addressing this.
But I want it to be known that the Galleria, and their property managers, Brookfield Property Management, clearly don’t understand the laws regarding psychiatric service animals.
And, Finally, There Is This.
In his song, People Are Good, Luke Bryan says, “I believe we gotta forgive and make amends, ’cause nobody gets a second chance to make new old friends.”
There is nothing in the world for an old friend – especially one who will lug you and your smartchair and your food allergies and your low blood sugar all over a new city.
There was one point during our trip where my leftie had just caught absolute fire and we were striking out with my dietary needs – before we learned the tricks – and we were having accessibility issues and I was feeling like WAYYY too much trouble. And honestly? I think I just really felt like a very SICK person. Intellectually, I get that I am sick – but, in that moment, I felt completely disabled. AND IT SUCKED OUT LOUD.
And I cannot imagine having been at that awful low without my oldest sister/friend to help rally and gather my horses.
I am so thankful.
Because we were together, that was the turning point of pulling it together, taking some deep breaths, remembering we can kick ass, going to get my fabulous Montreal ink, and finding our new strategies.
But it all starts with sticking with the old friends that love you best – especially when you need extra help – and extra reminders that you can do hard things and still have a fabulous time.
Thank you for the BEST trip, Ginny! I love you!
Be well, everybody.
Grace and Blessings.