This week, I went to my doctor’s office so she could do the ‘face to face’ appointment required to order a wheelchair for me. Normally I detest MD appointments (leaving home is painful- the docs are OK ), but I actually respect that Medicare requires this so that they aren’t paying for scam wheelchairs. I’m thankful that I’ll have the w/c available for times when I can get out. It’s been about eleven years since I’ve been to the mall. I’m not much for shopping, but it would be nice to just see human beings. I recently joined a women’s Bible Study, which has been great- I not only get to see people, but to interact with them as well. But walking from my car to and from the room where we meet is hard. My legs hurt, and I get short of breath. I look OK, except for a limp, and no eyebrows ever grew back after chemo. My head is shaved to minimize heat retention. I don’t look ‘broken’. But I feel decimated.
Grocery shopping has become increasingly more difficult. I can maneuver with the cart for support, but unloading the stuff once I get home as well as the toll that shopping takes leaves me in increased pain for about three days. This has been going on for a while, but it’s gotten worse. I don’t even bother with clothes shopping… I get undies on Amazon, and order t-shirts and Cuddl Dud leggings/longjohns online. I’m at home most of the time, so that’s all I really need. I’ve also found a couple of plus-size online sites that have stuff that is suitable for when I leave home. Amazon has Prime Pantry, and Walmart delivers, so some things are available to have dropped off at my front door.
I’ve had autonomic dysfunction (dysautonomia) for almost 20 years. That involves my blood pressure, how my breathing feels, and my heart rate (they go very low, and I keel over if it gets bad enough, or I feel like I can’t get air ). I have horrible heat intolerance, and must wear an ice vest when I leave home; too hot = unconscious. Dysautonomia can dull my memory (facial recognition is getting worse), make me feel exhausted when doing very little, and in general, make me feel off kilter. That’s what got me on disability (along with nocturnal left temporal seizures that leave me exhausted in the morning). The last two months I was working as an RN, I was sent out by ambulance about 10-12 times… I don’t remember any of the ambulance trips. The chemo I got for acute promyelocytic leukemia is known for making peripheral neuropathy worse, or starting it to begin with. The chemo was also hard on my heart; I had to skip the last dose of one IV chemo because my MUGA scan showed problems. Fortunately, my heart itself got better… but the cardiac symptoms with dysautonomia have been really wonky. I have degenerative disc disease, fibromyalgia, and degenerative joint disease (involves my hips at this point). I guess I need to be thankful for not being in a wheelchair sooner. And it will be ‘part-time’ at this point.
I seemed to do fairly well until this last summer, when the cardiac symptoms as well as the painful part of neuropathy started to change. There were several medication dose adjustments to deal with the blood pressure and heart rate changes (were going up with a palpable feeling of something being wrong, then dropping enough to diminish blood flow to my kidneys- that was scary). Then, I’d wake up with my right thigh feeling like it had been doused with some type of accelerant and lit on fire. One night it was so intense I couldn’t move. I was stunned into immobility by how bad it felt, and had to get myself calmed down enough to turn on my side- which helps dull the pain enough to not feel like something really bad is happening. Now, both of my feet are very sensitive, and I wake up with them hurting as well. My right thigh has atrophied (shrunk), which has left my right leg weaker than the left. The reflexes on that leg aren’t there from the knee down, and when I stand for any length of time, I begin to feel like the leg is going to give out. If I step back and forth between legs, I can manage to get through a grocery store checkout line, but I have to lean on the cart- and I look like I have to pee real bad. When I went to the store this week, for just a few things, not even my usual monthly trip, the pain afterwards was as bad as a ‘full trip’ to the store… it’s time to use one of those scooters, which don’t hold a lot.
One of the hardest things about these changes is that I need help. I don’t want to need help. My dad will help, but he has no clue about what a full month’s groceries looks like for someone who doesn’t eat out (like he does), and the running commentary can get annoying (“do you really need two of those?”, or “you’ll pay $5 for hamburger meat?”). For short trips, he’s great. I have a couple of high school friends who have offered to help me, which is very kind; they work long hours. I’m also going to hit up the Bible Study group for volunteers (meets during daytime working hours, so I’m thinking they might be available for a quick trip during the day, when the stores aren’t as busy). I now need the scooter, and need someone else to push the cart if I’m doing a full month’s shopping (for a mid-month trip, I can maneuver the scooter myself). For the past several years, I’ve done my shopping at 1 a.m. to avoid the rude people who don’t like being behind someone who is slow. I always move over in the aisle if someone is around, but for some, my being there at all seems to be an offense that could alter the course of their life permanently for the worse. It’s just been easier to avoid them, and shop when they are safely tucked away in their houses of intolerance. But, that isn’t going to work any longer for the monthly ‘big trips’. I need help. 😦
The chariot will arrive next Wednesday. I have a seat cushion ordered for it. My bio-mom suggested a tall flag attached to it. I am considering a cup holder and bicycle horn 😀 I figure I need to make the best of it, and look at it as something that will help me be less isolated, and reduce the pain of normal life. I will still walk around my apartment (that hurts, but it’s manageable). I can still take the trash out; it hurts, but I can still do it. I hope I can ‘chair walk’ (use my feet to propel myself) on the sidewalk at the place where I live, so I can go down to the pond and watch the frogs, geese, and crane-like bird that hang out there. I haven’t been down there for at least seven years.
Changes like this are hard. I’m thankful that I’m not in worse shape- things can always be worse. And I’m thankful that the wheelchair is available. Medicare and my expensive out-of-pocket supplement plan will cover it. But it’s a sign of decline, and that is hard. I’m only fifty-two years old. Something I wish I’d known when I was much younger is that nobody knows how long their body will work like it was designed to work. Even as an RN, seeing the end products of car wrecks, botched suicide attempts and recreational overdoses, and other life-changing events, I lived a low-risk life. I never imagined things going wrong from the inside. When I found out I was diabetic in 1995, I thought that keeping my blood sugars and A1C in good shape would protect me… chemo totally screwed up my blood sugars in 2010-11. I didn’t imagine my spine deteriorating. I didn’t see my life changing as it has. I guess nobody really does.
I guess that’s my point… live life while you can. Don’t spend every minute working double shifts. Pass up some of the ‘toys’ in life, and have a GOOD savings account in case you have your life turned upside-down through no fault of your own. Drive a used car. Live in a house that is “enough”, but not so much that it takes over your finances. Always get disability insurance. ALWAYS. (That has been the difference between living in some public housing pit, and a decent apartment.) Learn what you need, and what you want- and to be thankful for the needs that are met. Plan for craziness and be absolutely grateful for the mundane. And don’t give up when the craziness hits. Do all you can to be independent, but learn when you need help. But no matter what, be thankful.