Trying Out My New Wheels and IV Adventures

My Zinger chair arrived yesterday and I was so excited to try it out.  Turns out I needed to charge the battery first, so I tried it today after charging.  It wasn’t the ideal day because my husband has been busy preparing for a, ahem, procedure taking place tomorrow.  I was going to have my mom help out, but she was sleeping in after a bout of insomnia.  Did I mention that our condo complex is being painted and all of our windows and doors were covered in plastic?  Well, I went to my folk’s front patio, conveniently across the street, and my dad gave moral support as I went for a little spin.  It was so hot that we moved indoors- they have wood floors, so that helped.

Finally, my mom woke up to take me in for an IV infusion.  So, we took the chair to the hospital.  At check-in, we found my appointment had been mysteriously canceled.  They said we could come back at 4pm… Okay, what to do?  I had lab work pending, so we did that.  The lab tech asked about the chair and said something about being so pretty to be in a wheelchair.  Weird.  She thought I had MS, but I told her about POTS and Dysautonomia, which she hadn’t heard of.

Next, we went to the half-closed mall I had been planning for my first real test run out and about!  My mom always parks at the same place, which she did again from habit.  We went in through a big department store.  No power doors.  Large aisles were littered with oversized displays of merchandise.  It was so difficult getting through!  When we finally got to the main part of the mall, I had to rest.  Just being so alert and using both arms to operate the controls in tight spaces was exhausting!

After some rest, I started cruising the mall with my mom.  It was a ghost town in there, so I felt like I had some room and started to get the hang of it.  The controls are so different from other chairs and scooters. I tried going into a shop and had trouble with the displays again, but still got through.  The person working there was really polite and helpful.  She asked about the chair and said that they leave three feet between displays, but were doing work in the store which moved things around.  Who am I, the ADA police?  I certainly didn’t mean to make her feel on the spot, but appreciated her helpfulness.

img_23381We grabbed some food and did a little more cruising around the mall before going back to the hospital.  I didn’t get too many looks, and I did get some smiles, which was nice and unexpected.  Also, people were addressing me, whereas when I was pushed in a chair, they would talk to the person pushing.  We got some more practice outside in a paved area and also along the sidewalk.  I keep having trouble with being pulled accidentally to a side, especially when on a slight angle.  I’m hoping I can master this and that it is not a design flaw.  The literature warned about uneven surfaces, but alas, the world is not flat.

I was very struck by the fact that I was seeing things and going places I hadn’t had access to in sometime, unless being pushed.  It’s hard to explain why it is is different.  I feel very passive being pushed in a chair and like I am not making decisions.  With the power chair, I am alert, I am paying attention.  With this power chair, both of my arms are engaged and I am using those muscles plus my core muscles.  It just feels more like walking around in that I have autonomy, interaction with my surroundings, and body movement.

Finally, I went in for my IV infusion.  img_2351It’s my third one and I haven’t had much improvement with them.  The infusion center is where people get their chemo.  The nurses are always very puzzled by me and my condition.  This nurse asked about my condition and why this IV is supposed to help.  I was pretty drained, so I didn’t give her the best info- I just kept it short.  I need to start handing out flyers and info brochures, because almost everyone I come across at the doctor office and hospital have never heard of POTS or Dysautonomia.  It’s always so strange to be in the infusion center.  It reminds me of when I was misdiagnosed with Lymphoma only to find out I actually had Castleman’s Disease.  I actually had iron infusions in a cancer center at the time.  I remember hearing about my chemo plan and then never actually doing chemo. I keep ending up in these infusion centers where everyone else is getting chemo.  I see them and see how hard chemo looks, yet I know that I don’t really know what they are going through.  I wonder what life would have been like if it had been Lymphoma, but that I can never know.  And while I do wonder, I am very well aware that fighting Lymphoma and enduring chemo would be extremely challenging.  While the Castleman’s tumor was removed by surgery and not chemo, I imagine I’ll be living with the damage to my vagus nerve my whole life, so that is my journey now.  I think it’s important not to compare our health journey with others’, but it is hard not to wonder about the path I thought I was going to be on, only to find myself where I am today.

All in all, I am liking the chair, but not sure if my IV infusions are worth it.  I think the most helpful things for me treatment wise have been heavy hydration with electrolyte drinks and I also need to give the compression stockings some credit.  The meds are meh.  Treatments just don’t seem to do much at all.  I’m happy for my adaptations like the canes and wheeled devices.  I’m glad I was out of the house so much today.  I’m looking forward to getting better at using the chair and getting back into life more.

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