This one went to OH this week 🙂
More on him in a while….
Before dysautonomia, I loved grocery shopping. I’d go to several places for various things, and just truly enjoyed picking out fresh produce, making new things, and trying something different each time I shopped. Now, I am thankful to get out upright and lucid, and home on my own power.
I’ve learned that it’s much better for me to shop in the middle of the night when others who are huffy about me being rather slow are home with their noisy kids. It’s also cooler, and while I wear my ice vest year round (in the winter people have the audacity to have their heat on), it’s the only truly safe time to go (well, as safe as it gets). If I try to go when it’s 90 degrees outside (and humid, like we have in Northern Illinois, and most of the Midwest during the summer), it would be incredibly foolish. I can manage a quick ‘refill’ trip for milk, ice, and things like that…. but for my main shopping, it’s a middle of the night affair. Handicapped parking also helps (and keeps me as independent as possible). And, I remembered to take my cell phone tonight !
I just went shopping a few hours ago. This time was rather noteworthy as I’m just now back on the extended release form of propranolol (beta blocker that works for me). The idiots that decide the formulary for the Medicare part D prescription plan (which I pay for– and get the highest coverage possible) opted to cut out the extended release versions of generic meds. GENERICS ! That stuff that was free (for the past 4 years) if ordered through the preferred mail order pharmacy every 3 months is now $75 per month. Each. In addition to the other stuff I have to pay out of pocket for, now there’s this. And the premium – I’m paying for the privilege of not having good coverage. I spent a LOT of time comparing Part D plans…. they all chopped the extended release of many meds (my main seizure med was cut back to the regular release unless I fork over another $75/month for that; that regular release works OK for me)- as well as muscle relaxants, nausea meds, clonazepam
(even though it’s used for the dysautonomia, and adjunct to seizures- which is its original classification as an anticonvulsant- it’s a benzodiazepine, which are considered bad news for the usual Medicare population, so it’s not covered…. can’t depend on a doctor to know what his/her patient needs), and the inaccessible forms of insulin that would be huge problems with the ‘donut hole’ where coverage stops until another level of out of pocket costs is met. So I get the stuff that has been around since T. Rexes roamed the earth (but thanks to Walmart, I have an option that I can get if I fiddle with my budget for other things- can’t NOT have insulin). Sigh. Grumble. Arggghhhh. 😦 I worked 20+ years to give good care as an RN… and now, I’m getting bottom of the barrel stuff. But, at least I’m not eating cat food like some people resort to. 😮
I had to try the regular release propranolol, since $75 is HUGE to add into mandatory expenses. And, it was a big failure. Since the chemo for the leukemia back in 2010-2011 (19 months), the autonomic stuff has gotten considerably worse (not uncommon with chemo with people who do NOT have autonomic problems ). It’s now making my thigh muscles shrink (adios strength that was pretty iffy to start with) along with the blood pressure, heart rate, fatigue, heat intolerance, etc., especially in the evening. I was already taking an extra 20mg many evenings, when the facial flushing and tachycardia started, as I just watched TV- no trigger or physical stressors. The regular release stuff had me sleeping up to 20 hours a day- waking up just long enough to take more meds, get something to drink, check my blood sugar, pee, and go back to bed. That wasn’t going to work, so I had to fork over the $75, and add it to my monthly expenses list. That means I pay about $700 per month for Medicare premiums, a Medicare supplement, out of pocket drugs (insulin, syringes- to keep me out of the ‘donut hole’ where there is no coverage), over the counter drugs, Part D premium, dental premium, etc. My rent isn’t much more. That’s nuts. BUT, I’m back on the ‘good’ propranolol (Inderal). The good news is that I get enough meds to get free delivery for the out-of-pocket-cost meds. ! One less trip to the pharmacy. That’s always a good thing. Oh, did I mention that I’m now in perimenopause and have hot flashes? They are definitely not the same as the normal heat intolerance. For about 15-30 seconds, I feel like I have a bonfire inside of me. Not good.
I made it through getting this month’s groceries, at the less convenient, but more options, grocery store. I do have a friend who will pick up bottled water for me (city water here is like putting a straw in a swimming pool, there’s so much chlorine- and I actually have stalactites growing from my faucet, the water is that hard… I chip them off periodically; and my fridge isn’t big enough for a filter pitcher, and fresh food). She’s great about dragging water over- but she also has a life, job, husband, and young kid. My dad will help – but his idea of shopping is getting enough for 3 days. I can’t function like that. I have to get what I need, and be done with it. I’m the one who deals with %95+ of my shopping… and unloading it from the car, putting it away, hating that I hurt for a day or two afterwards. Fibromyalgia, degenerative disc disease, and arthritis don’t like shopping at all.
I do make use of Amazon and Schwan’s. I think most folks know about Amazon, and they’ve started Amazon Prime Pantry. It will require a $100/year fee, but I can get grocery store items in single units, at grocery store prices (decent ones), and as much as can fit in a box that is rated for 45 pounds will cost 6.99 per shipment of the whole box. Plus there are perks with the regular Prime for non-grocery items. That is a good thing. And there’s Schwan’s, that has frozen food that is actually good (the ice cream cones are addicting… I have to have very good blood sugars before I can indulge in one of those ) . Many items are basically heat-and-eat. Minimal prep (you can get raw proteins, but I rarely do). The turkey and mashed potatoes, and sliced beef and mashed potatoes are really good…. they have great fruit and veggies, and also decent breads (I don’t use a lot of bread, so the smaller loaves or baguettes are great). That has helped a lot. My dad got me a 7 cu ft freezer for Christmas for my ice vest inserts and ‘back-up’ inserts- and it’s been way roomier than I expected, so I have room for a month’s worth of stuff, easily- and some bags of ice. It helps SO much to have stuff dropped off at the front door. That is a huge help. The dollar entrees (Michelina is the brand I get- both the lean and regular versions) are pretty good, great on the budget, and three minutes in the microwave equals a decent small meal (which I prefer).
So, now I’m home, showered, and getting ready to go to bed. I had some nasty calf cramping when I got home, so took some magnesium and potassium along with a pain pill, and am seeing if that’s going to be enough before I go to bed, to not wake up having to step on my foot to get it to flatten, as it’s spasmed so hard into a ‘toe point’. Also drinking some tonic water with powdered lime (True Lime)…. tastes great- and the quinine might help the cramping. The fluids won’t hurt either.
It used to be so easy. I’d lug stuff up to a third floor apartment at times (lived there for about 3 years- and only had 1 1/2 flights of stairs how the building was set up). Thought nothing of it. I was younger, and it was many years before the big D was diagnosed. I never wondered if the ice vest was going to ‘hold’ (it actually draws heat away from me; I’m looking into some inserts that are actual ice packs for really warm situations). I didn’t know cooling vests existed…. or that people had need of them. I didn’t wonder if I’d pass out, or be on the road home and have to pull over until a pre-syncopal episode passed. Fortunately, I do have enough warning, and know what symptoms lead to what, for me.
I’m thankful I can still do what I do. This will be the only time I’m away from home except for MD appointments this month. There are no social outings. I do want to go to a conservatory here that has amazing plants and flowers (camera op !!), but figure it will be heated- and that will require the ice vest, and rolling walker with the insulated bag for the back-up inserts. I will have to wait until the fall now, for that to work.
I still think about doing things, and do what I can to stay busy at home (the reborn doll painting is helping…. here’s some examples of a doll I’ve done and sold- they start as blank vinyl…no color. It’s my biggest activity now, on days when I can tolerate being in the chair. I end up in pain, but I do love making something that (so far) three people have liked enough to buy 🙂 Totally off topic from shopping, but it helps the bummer days when I can do something creative- even if only 15 minutes at a time. 🙂 OK. I’m rambling. Time to go to bed (it’s 7:30 a.m.).
Same one that is in the pink shorts and striped shirt.
Still here… will be getting hand rooted hair (each individual hair inserted).
14″ long, 2 pounds
16 inches and about 3 pounds. I redid her from one I bought…. I didn’t like how pale she was.
21 inches, and about 6 pounds. She’s a thrift store rescue I got on eBay- and fixed up.
Scarlett kit by Cindy Musgrove
22 inches long
7 pounds 8 1/2 inches