Considering what has gone on with three people who have been very important in my life this year (they died), I have to know that I’m very fortunate. Two had battles with horrible cancers between 9 and 10 months long, and one had a sudden collapse with an aortic dissection, but lived two more days…. she had been over a few weeks earlier talking about limited time. Maybe she know something was up, or was just being realistic that at 89 years old, she wanted to get things in order. We had a really nice visit that I’m so thankful for. The one who had the 9 month battle with colon cancer is a cousin I had a lot of phone and e-mail contact with during her horrific struggle. The other was my dad’s lady friend from church;she and his first cousin (with the aortic dissection) had services last week. I wasn’t able to go to either, but did at least meet the lady friend’s family, who I’d heard about for years, and felt a need to pay respects to them; we’d all heard about each other for years. I couldn’t stay long, but at least I popped in after the service for a few minutes. I will miss them especially during the holidays, but also in general, as they were either family, or just about, as she and dad were buddies for church dinners, going out with friends, etc.
Overall, I really do realize how fortunate I am, but I don’t have many perky days when all is sunny and wonderful. There are some times when I just get overwhelmed when I think about what I used to be like. Other days, I do my best to get by, and I do still have a lot that I enjoy from home. I still get to help out family and friends with medical questions/translations- and I’m very glad to do that. It helps me feel useful in some way. And I get rather nostalgic about the days when I was working 3 12-hour shifts a week as a charge nurse in some sort of facility (hospital, drug/alcohol rehab, adolescent psych), or the Monday-Friday desk jobs entering assessment data into the computer for Medicare reimbursement and/or care planning for skilled nursing facilities. I also did some stints on neuro floors, head injury rehab, and pediatrics- so a greatly varied career that I miss. A great thing about nursing, especially in Central, rural Texas between 1985 – 2002, is that when I’d get bored with something, I had no problem finding another job within days. Sometimes the offers were waiting for me on my answering machine when I got home from the interview. Being an ADN, and not having a 4-year degree was never an issue, either as a staff nurse, charge nurse, weekend supervisor (only RN in the building/facility), or department head. I was lucky to graduate from nursing school in 1985 when we were expected to know how to do procedures and skills, or we didn’t graduate.
Then came disability in 2004. I fought through 8 years (starting in Texas) of trying different medications to regulate the fainting and weird episodes where I turn beet red, then a bluish red, before becoming pale and cold like a corpse. For eight years, I muddled through, and even had several decent years after the neurologist down there wanted to try an off-label medication. By the time I was told I was no longer OK to work (by my boss in IL in 2004), it crushed me. My identity had always been as an RN. I didn’t have a husband or kids, so no other roles. My relationships were all with co-workers in Texas ( even though I’d moved back to Illinois, where I was basically thrown away- nobody returned calls, and one former coworker went out of her way to avoid me at the grocery store). I’d gotten sick- I hadn’t embezzled anything ! I guess it’s a Yankee thing.
That started some very chaotic years of figuring out what meds would help with the worsening symptoms (fainting more often, with some injuries including a concussion, and torn meniscus on my right knee requiring a knee replacement, some very strange medication interactions that caused a small stroke, many blood clots in my right lung, and ultimately leukemia (AML, subtype 3, or APL) which required chemo that worsened the autonomic disorder with thigh atrophy and increased sensitivity to heat). I was a ‘regular’ at one of the ERs early on, and they treated me like trash. Had I not gone to a decent ER with the blood clots in my lungs, I likely would have died – they were numerous in all three lobes of my right lung and pulmonary artery, and in various acute, subacute, and chronic stages. The apex of my heart had pressure against it from my lung pushing into it. It was bad. I only went to the hospital because I thought I was having a heart attack.
I’ve been essentially homebound for ten years. I’m not sure that many people really understand what that means
when “friends” here (coworkers) disappeared as soon as I left the parking lot on my last day. I do have my dad, and a couple of friends here- one in particular makes an effort to come over periodically, and has done a LOT of work helping me get things organized so that I can get “stuff” minimized around here. She has been incredibly helpful once we found each other again on FB a few years ago. I have been invited to family holiday parties- which I can attend one of, after everyone eats, since hot food in close proximity to body heat of other people is a problem- so I go when I’m less likely to stick out as being totally weird. I really like that family bunch, and I hope I don’t come across as not liking them. I just can’t tolerate a room over 66 degrees.
There are days when I don’t hear another human voice other than my dad (who is 82 and healthy, so I’m very thankful for that). We try to do daily “attendance” checks with each other, and he is really a huge asset in my life for many reasons… he always has my back. I know he will never give me bad advice. I might not see another human more than once a week (again, dad) for a few weeks at a time. The phone rarely rings… usually it’s dad, my birth mom, or a reminder for a doctors’ appointment or test (this week it’s an abdominal/pelvic CT for some intense bloating likely related to the autonomic problem). Facebook is my primary form of contact, and I’m incredibly grateful for that; prior to getting this laptop from my birth mom and cousin, I was even more alone… now I can at least keep up with people I’ve known for years, whether from work, family, or childhood. I challenge anyone to unplug the phone, have nobody show up at their door, and not hear another live voice in person for days (and occasionally weeks) at a time. It takes getting used to- and even now, it’s still hard.
I miss seeing co-workers and patients. I miss being able to just go out and do something social without having to deal with the logistics of cooling vest equipment, distance from home, how I’m going to get there, can I leave if I need to, etc. There are no ‘going out to lunch’ days (who would I go with?). My dad is the one I go places with on the days when I can go (and I know I’m the most undependable ‘date’ with frequent last minute cancellations because of symptoms of some sort). He knows that when my cheeks turn a deep bluish-red that it’s time to go. And he’s always willing to take me anywhere.
People don’t understand that I can’t unload the dishwasher and fold laundry in the same day, or I end up with spasms from the base of my skull to my lower back, and am useless for a day or two. Chronic pain isn’t ‘seen’. Fibromyalgia and degenerative disc disease are chronic and the DDD, will get worse (degenerative is a clue)- so I pace what I do as much as possible. I miss the days when I’d set my mind to doing something around my apartment, and not stop until it was done. That’s long gone. I ‘look OK’, so I’m not sure people understand that I really am doing the best I can. I live independently (getting many things delivered to my apartment from Schwan’s- frozen foods, Amazon, and Walmart). I go to the store about once a month… maybe twice if it’s a good week about halfway between disability checks. I still want to do as much as I can myself, so I don’t lose any more muscle mass. The initial chemo took up about 20 pounds of muscle, and then the neuropathy in my thighs took much more – while I gained weight on chemo (not easy for my head to deal with, or to get rid of the poundage).
I’ve written about the expenses of Medicare and medications not covered in other posts. Buying insulin from a part D plan guarantees that anyone on it will go into the dreaded ‘donut hole’ where meds are NOT covered by the Medicare drug plans. Most diabetics are on several medications. The donut hole is dangerous. The ‘good’ insulin is upwards of $200 per vial….between the two types of insulin I use , if I got it from the part D company, that would be $600 a month just for that- minimum… Thank God for the cheap stuff from Walmart; I’d be sunk without it. I don’t understand why insulin (the better stuff ) – a drug that is absolutely necessary for many diabetics- is so unattainable. I worry about this sort of stuff…
But mostly, I miss the things that I used to take for granted… seeing coworkers, having daily contact with other humans, having a purpose that felt like ‘me’ (being an RN), and not having to plan for every contingency every time I leave the apartment, even if it’s only for an hour. My short term memory and word-finding are still not back to normal after chemo. Going to the store for fresh produce every week has been long gone. I might figure out something with dad, to go with him a couple of times a week to get fresh fruit and veggies.
I really do have a LOT to be thankful for. I have survived a lot. During my 55 year old cousin’s final weeks, she weakly asked why I was allowed to live and she wasn’t- not in a nasty way, but in a tone that just sounded like she was trying to make sense of things. I don’t know. I know I must have some reason to still be here. I hope I can make a difference somehow. The blog helps… I keep track of my stats, and more than 100 countries have hit more than 16, 000 times. At least people know I’m still here… that and Facebook. And my dad and a couple of people I see every month or two. That they take time out of their busy lives (and they are busy !!) means a lot.
I’ve got God, my dad, my birth mom, folks on FB, and my dog- who is my main companion and pretty good at it 🙂 So, even though I miss what my life was, I’m at least alive, and still able to live alone, and figure out how to get things I need. I truly am thankful for that. I know that there are others out there who struggle a lot more. I remember those people I used to take care of that were never going to live on their own again. I don’t know where the dysautonomia, diabetes, degenerative disc disease, degenerative joint disease, or lung scars from the clots are going to lead me… but I’m sure I’ll figure it out. I always seem to land on my feet 😉