I’ve been meaning to write, even had part of a post written before I tried a “quick” update way back when. Anyway, in the interim, I’ve been battling super duper high blood pressure. And, oh yeah, my mom had a stroke. Yeah. Stroke. Like full-on stroke – not the “mini” strokes I had in the summer of 07. It happened Saturday night, after the Kentucky Derby.
Which, by the way, can we just say Holy Fucking Science Batman?! Damn was that an upset. The winning horse took off on the last turn, when he was in the back of the pack, and just flew along the inside. His jockey is kind of known for riding the rail; he did it the day before in the Kentucky Oaks (and won) and did so in the Derby. When you watch a replay from above, there’s a certain point where the horse goes on the inside beside these two horses riding neck and neck – and it doesn’t look like there’s any room for him to go by there. But, he was going so much faster than all of the other horses that his one stride didn’t even affect those other horses. A thousand+ pound animal (carrying a wee man) squeezed through a spot not even big enough for him and kept going. I know last year Big Brown won by a huge amount but it was in no way an upset like this year’s Derby. For one, Big Brown was kind of the favorite. And although he hung behind for most of the race before putting on the heat (his jockey rides similarly, and you could see it in this year’s Derby but his horse this year wasn’t powerful enough) he was by no means in the back of the pack – more like the middle. And he won by almost 5 lengths (which is damn good) but the horse this year? Uh, try a little over 16 lengths. Yes. SIXTEEN. Holy fuck. Just like last year, dad and I talked on the phone right after the race and what happened, etc. Of course, last year I was in Tampa and he was in WV. This year, I was in the basement and he was in his bedroom upstairs. Same thing.
Anyway, mom watched the derby and was pretty excited. The horse was 50 to 1 and there were huge payouts. A superfecta (correctly picking the top four horses) paid almost $600,000. Of course, you would have needed a bookie or been at a track to get that payout – places online that let you bet on the race max out at a 50 grand payout. Anyway, I forgot about the race until the horses were entering the gate. And only realized then because the wireless on the router went out, causing me to call upstairs to have it reset and dad reminded me of the Derby. I had remembered earlier in the day but then started feeling bad again and took a nap. Then totally forgot. I wanted to bet on it because I have some money in my betting account online from my winnings last year.
So, she watched the Derby then shortly afterwards started feeling “off” I guess. She got a bad headache and her blood pressure ended up going pretty high. Now, I need to digress for a moment to explain something about her. I’ve mentioned before that she’s not the healthiest person. That’s really an understatement. She has ailments galore. I mean, she’s got a goiter. People in the US don’t get goiters anymore as a general rule. (Thanks to iodized salt, goiters from a lack of iodine are pretty rare in developed nations. And, mom definitely likes her salt. But yet, she has a goiter – though small and not recognizable to the naked eye; it’s still there. Actually, there are obviously other causes of goiters, most notably being issues with the thyroid and its production of certain hormones – which is how she developed hers. Also, ever since my first college biology class where the textbook had a picture of a woman in an underdeveloped country with a goiter the size of a cantaloupe, I have been terrified of them. The fact that she has one from her thyroid issues, and the fact that my own thyroid is very very slightly out of whack – as in on the cusp of the line between abnormal and normal [though, the standards of what is "normal" recently changed and by the old guidelines my readings are outside of said normal range...but no doctor feels it's worth investigating further] means that I have a slightly elevated chance of developing one myself. I mean, I probably have a better chance of getting something else but still. GOITER!) Besides the goiter that she has, there’s the diabetes, the thyroid wonkiness, the high blood pressure, high cholesterol, heart disease (complete with two known heart attacks prior to 2003 – possibly more since then but she doesn’t see a cardiologist and won’t go through tests and whatnot, three cardiac catheterizations with stents placed to open arteries in her heart – one time complete with a procedure that basically radiated parts of the artery afterwards in hopes that scar tissue would not form, then open heart surgery with triple bypass – though two more arteries were blocked they were inaccessible and since then she’s been told she will just have to live with the chest pain, etc from those blockages because they are in areas that cannot be reached. Which leads back to the reason she’ll no longer see a cardiologist or have any more procedures or tests done; although there could be new blockages it’s highly likely her frequent chest pain is caused by known blockages that cannot be fixed.) Hmm, so there’s that. Then we have a history of just about every type of hepatitis discovered. One she had as a child. Others were contracted while nursing; a needle used on a patient accidentally punctured her. Her liver isn’t in the best shape because of this; and back when she still did see doctors it seemed like each time a new form of hepatitis was discovered, she had it. This didn’t help with her later liver problems. Mom also has something called a pheochromocytoma. Awesome word, not so awesome ailment. It is a tumor on one of both of your adrenal glands. It causes certain things, namely adrenaline, to be secreted in excess. Which puts a person into the “fight or flight” mode. This kind of sucks when you already have a history (and very strong family history) of mental illness, including anxiety and panic. Often, it’s hard to tell what is actually causing her panic attacks; if it’s something physical happening from the pheo or if it’s something mental happening from out of whack brain chemistry. Mom also had kidney failure while pregnant with me and although it was acute and she recovered, her right kidney has atrophied/is much smaller and has less function than the left. She has frequent infections in her kidneys along with frequent kidney stones. Oh, and back to the liver. A couple years before all the heart badness started, she was given a medicine to lower her cholesterol. It turns out that one side effect of this medicine was developing masses (generally benign) throughout the body. Oh, and some muscle loss for some reason. So, she has a handful of masses – all through her body and of varying sizes. A couple on the kidneys, one on her lung, a few other I can’t remember and then a particularly pesky one on her liver. After her open heart surgery, just a couple days after discharge, she got very sick. Like, dying. This was maybe a week to a week and a half after the actual surgery. She was septic – had an infection in her blood that had started to affect all of her organs. And it wasn’t readily apparent where the infection originated. Of course, with any surgery there is the chance of infection. With a huge surgery like a bypass, the chances are much higher. At some point, it was finally realized that the cyst attached to her liver had become infected. And, since it had first been found, it had grown in size by…uh…a lot. Like the goiter I saw in that textbook, her liver cyst had grown to roughly the size of a cantaloupe and was filled with infectious purulent goo. (As an aside, the adjective form of pus is purulent. It’s funny to me when I read medical sites that call something that is full of pus “pussy” rather than purulent. How embarrassing. I’ve even written a few, because it’s clear they are just copying the material from an original incorrect site. Never have received any response, nor have any of the places corrected their vaginal mistakes.) So anyway, right after her open heart surgery, she had to go back in the hospital for nearly a month. The cyst was drained many times over (it contained a substance not entirely unlike pea soup. I always knew there was a reason to not trust peas, especially in soup form.) They tried to “fix” the cyst somehow locally. It’s intertwined with her liver so spectacularly that it cannot actually be removed completely. But it was drained surgically, it was cut open in the hopes that it would collapse, etc. She finally went to Johns Hopkins for it. I believe she actually saw an oncologist because they were convinced it was a malignant mass, and a very serious one at that. The doctor even told us how surprised he was after the surgery to find out she didn’t have cancer. Anyway, they removed her gallbladder do to proximity to the affected area, resected the cyst and her liver (basically cutting as much of the cyst away while leaving as much of the liver intact since her liver was already kind of on sketchy grounds.) They placed a mesh…thing…over the cyst that had been cut out in hopes that it would prevent it from growing back. Sadly, the only thing it really did was make it extremely painful when the cyst breaks through parts of the mesh in her abdomen. Now, this surgery was about 4 hours long…maybe more. Hard to remember, really. At the time, the surgeon was also going to remove the tumors from her adrenal glands (that fun pheochromocytoma I mentioned before) because of the small chance it was cancerous and the fact that it was something that could be treated there and not in the small town here. She had initially agreed to it, but moments before wheeling her into surgery she found out that having it done would make the event an 18 hour surgery and she freaked. And refused that part during her pre-op prep. She never fully recovered from the summer of heart and liver surgeries, basically because the things she needed to do to make her heart stronger and the bypass successful were made impossible because of the liver stuff. Now she continues to suffer with problems from both.
I tell you all this to illustrate just how unhealthy my mom is at the ripe old age of 55 (a month shy of 56, actually.) She’s been considered disabled since 2003 and hasn’t worked since right before her heart surgery April of that year. But really what’s worse is that she developed a mentality that she is sick. Sick and old. Not capable of taking care of herself. And so on. Along with that, she has frequent medical…issues. If she went to the ER every time she had chest pain, she would be there more often than at home – even if she wasn’t admitted. As a former nurse, she generally treats herself by self-adjusting medications. A doctor’s nightmare, really. But she’s stubborn and the available healthcare/expertise of the medical professionals in this area is severely lacking to say the least. A few quick examples: With her heart and its blockages – she’s been told to stay home and wait to die by one particularly rude cardiologist. Unfortunately, better cardiologists in better hospitals in actual for real cities have confirmed that two of the bothersome blockages simply cannot be treated surgically; and medically it’s unlikely they can be fixed. But, you know, they didn’t tell her to go suffer until she dies. Another example comes from long ago. Way back when I was a baby and very sick. Remember, Mom was in renal failure while pregnant with me. I was delivered while she was dying, literally. She was scheduled for medivac transport to Baltimore but couldn’t go because of a blizzard. Dad, being her medical point of contact, had to make the decision to save her life over mine when it came to it. Not if. When. She went into labor without realizing it because of how sick she was. And I sort of just popped out when she was being transferred from one bed to a gurney. She spent a month or so in the hospital after I was born, and although I was rather premature I came home after a week. She says she never really bonded with me; then again studies have shown the bonding happens in the first 3 minutes after birth. She didn’t see me until right before I was discharged. So anyway, I made it through a birth that really should have killed us both. Unfortunately, it has caused me to be susceptible to all kinds of illnesses and I’ve spent my life getting one stupid thing after another. But, one of the “big” ones happened when I was about 3 months old. What was my diagnosis? SIDS. You know, Sudden Infant Death Syndrome. Something that isn’t diagnosed in a living child but rather put down as a cause of death. The doctor treating me told my parents there was nothing that could be done; take me home and wait for me to die. Sure, this was a long time ago but I think it speaks volumes for the type of care available in this area.
So, anyway, we have this history with shitty doctors. Summer of 07 I had a reaction to my meds and experienced 20+ mini-strokes in just over a month. During the first one, I went to the ER. The doctor said I had a concussion because at some point I mentioned that I had been playing with the dog, was laughing and bumped my head. AFTER I had lost the use of the left side of my body. This was his diagnosis because despite three separate tox screens (and the accusation that I “maybe took a few too many Xanax” – no lie) he couldn’t prove that drugs of the legal or illegal variety had caused my problems. He refused to listen to me during the assessments. The concussion ideal was ridiculous because, as I told him, the dog did something silly and I laughed and literally just barely bumped my head on the wall as a threw my head back laughing. Wasn’t even hard enough that it gave me any pain at all. The PA that prescribed the meds was clueless about the issue; as I declined to the point where Dad had to hold me up to walk and I shook all the time (which I later realized was a side effect – tardive dyskinesia – from one of my psych meds…also one of the meds that was causing the mini-strokes because it was mixed with something it should never have been mixed with.) She pretty much wrote me off and told me to wait until I got in to see someone at WVU a month later. The neurologist said I was faking the problems because I didn’t want to go back to Tampa since it was so much easier to just live at home with my highly dysfunctional family. Uh, yeah. Mom has had many, many more experiences like this with lots of the doctors here. While having a drain placed in her liver cyst, she was awake for it. And got to hear the doctor fighting with the anesthesiologist (not there to put her to sleep, but a slight sedation and covering her pain) over which organ was the liver and which was the gallbladder. Maybe to the layman this is a valid question. A surgeon, not so much. Plus, the liver is kind of in front of the gallbladder and about a bajillion times bigger. Trust in the doctor? Not so much in this case.
So, yeah. Lots of bad experiences over many years. Plus she was a nurse for nearly 30 years and knew just how little the doctors cared or what amount of effort they put in to treating patients and all that jazz. So, as a general rule, she won’t come to the ER unless it’s BAD. She very nearly came a week or two before I was admitted because her chest pain wouldn’t go away and thought she was having another heart attack, and one bad enough that she wouldn’t be able to pull through it on her own. (She theorizes that she’s had at least one, but probably two or three more since her surgery just based on how she feels before/during/after the MI.) Eventually she decided to stay home instead. When my stomach flared up again, I waited until I was so dehydrated that I was too confused to really manage anymore and too weak to walk without being held up. I just didn’t want to deal either. So, yeah. Long story for the background but it’s kind of necessary to understand why we acted and/or reacted the way we did.
As I said, on Saturday evening Mom started feeling weird. Her blood pressure was up some. I had been feeling bad, had taken a couple muscle relaxers which basically knock me out. Dad had come downstairs a few times asking questions about the high bp, if mom could have a Clonodine (very strong BP med that I take sometimes because I have random, unexpected and unexplained spikes in my own BP.) As a general rule, she won’t take this pill because it has too many side effects – especially for someone with the medical history she has. I apparently thought he was asking for another similarly-named pill because I either refused to give it to her or said I didn’t have it. I don’t remember, honestly. And I do know I kind of blew off some of the stroke questions because I didn’t realize Mom was in the process of losing use of her right side. Now, I had been waking up very early all week, so I was up around 6:30 the following morning and went upstairs to get my breakfast of Freeze Pops – the one thing I rarely throw up. I was surprised to see my dad up so I went to talk to him. And then I realized what had happened.
Starting around 10pm, Mom’s headache got worse and then she gradually lost control over her right arm and leg. Her face is/was fine and she actually had feeling in her limbs – just couldn’t move them on her own. She had decided on her own to not go to the ER, I guess in the hopes that it was just a mini-stroke and the symptoms would go away like they did for me. Which, in all honesty, was a completely valid thought as she has had mini-strokes before (and, like I said I have too – although they were medicine related.) Also, knowing we have idiots working at the hospitals makes it hard to bring yourself to come in because you know that the likelihood of an actual diagnosis of stroke and/or proper treatment of it is slim. So, Sunday morning I helped get her to the bathroom. Which was really just one of our kitchen chairs with the cushion off and a drywall bucket underneath. Walking her those 7 feet was damn near impossible. I had her good side, dad had her bad. Unfortunately, he doesn’t actually know how to transfer/assist someone properly so he kept hurting her. And I still have so many back problems plus the stomach problems that it was difficult for me to even support her good side. While walking, since she couldn’t move her right foot (and to get her actually moving) she would take a step with the left then I’d kick the right one from behind so that it didn’t drag. Pretty clever move, I thought.
So, we decided she definitely needed the ER because she was worse rather than better. Called my uncle to come out to help get into the ambulance. I say this because we only have volunteers working the ambulance. And, uh, often their average age is about 80 years old. They actually ask if you can go ahead and walk yourself down the stairs, down the hill and climb into the ambulance. No lie. During my mini-stroke my dad damn near carried me with some little old man helping to support. I had no control over my affected side (the left one, I think…forget now.) So, we figured that she would have to be carried out and it would be easier to have two strong men to do it rather than just dad. Because of course Jeremy wouldn’t even get out of bed. The last thing he said, while she was declining the night before, was to my dad….asking if they were still going out to play poker. Yes, seriously. He’s never called her and only came to see her tonight because after Dad dropped me off and went to pick him up, I needed him to bring me a prescription. I forgot something at home though and asked dad to run to get it for me before leaving me here. Jeremy was supposed to stay for the whopping extra 30ish minutes, but balked saying he was tired from his long day. Long day of working from 3pm – 8pm. I’ll admit that he has had a few 18 hour days this week while working two jobs, but on his days off from one or the other job he refuses to come up. After work, he refuses to come – even if it’s a short shift. And he refuses to call. I’m fairly certain he wouldn’t have come tonight unless I had needed my medicine. Good child, that one.
So, surprisingly enough, when the ambulance people came they were young strapping men. They can’t use a stretcher in our house because of the layout – no way to get it to turn from the stairway coming into the house to the hall towards the bedrooms. But! They had this awesome chair they used for her. It had wheels on two of the legs and extra long handles and such. And she was strapped in. The transfer was a cinch. I rode in the ambulance with her. Once she was here, a doctor actually saw her in the first 15 minutes or so and said it was clear she had a stroke. Oddly enough, they can’t actually find where the clot is. There’s an old clot/old stroke in her brain which was discovered about 10 years ago. They wanted to do an MRI but she’s so terribly claustrophobic and needs sedation to get in one. But with certain strokes, sedation is very bad. So, not knowing what kind/where it was they refused. And apparently open MRIs don’t show as well.
In any case, it’s been a struggle. Tonight is the second night I’m spending with her. On Wednesday evening, she was discharged from the hospital proper and admitted to Rehab. Basically meaning that the worst of it was over and it was now time to teach her how to take care of herself and become as independent as possible again. Now, Monday and Tuesday I battled extremely high blood pressure myself. I mostly treated it with medicine and chalked it up to stress. The basement (my living quarters) flooded ever so magnificently on Monday. For the first time in a decade. Originally, the basement flooded with every big rain because the drains weren’t done right. Once fixed, it only flooded one other time – also during a period of huge rains and massive flooding. Which was the case early this week. My poor cat…his food floated away. He couldn’t get to the litterbox. At one point, he finally made it to the stairs and we moved his essentials there. Litterbox at the bottom step with a towel in front so his paws wouldn’t get wet from dad and I walking around and food on other steps. It was great until the dog started barking like crazy because the little boy who sometimes walks him came over. To the back door. With dad checking the front door. Poor Ziggy – he flipped the fuck out and RAN through the water as fast as he could to get to me and higher ground. His floofy tail? Not so floofy when wet. In fact, it’s kind of pathetic. He didn’t even bother sleeping on my feet – he snuggled up so close to my torso and stayed there the entire day. The water receded that afternoon, but he still doesn’t trust the floor. And, sadly (or stupidly) I never actually got around to unpacking my stuff. My clothes were mostly in piles on the floor as I dug through them looking for stuff to wear. I now have to wash everything I own. Also, it smells dank and downright gross down there. I don’t notice so much when I’m there – but if I go downstairs the smell hits me as soon as I open the door. Ugh.
Anyway, like I said before, mom has issues with anxiety. And apparently had been getting confused at night. When she was on a regular unit it wasn’t a big deal because they were monitoring her heavily. In rehab? Not so much. So after the first night of being terrified, she called and asked me if I wanted to make some money being a sitter. She actually offered me 100 bucks a night to stay with her. Obviously I’m not going to actually take the money, but I did come up to stay. Thursday night, I wound up sleeping on the floor because the chair here was so uncomfortable and made my back KILL ME DEAD. The lovely nurse found out and stole me a recliner from another unit and is keeping it here for me as long as we need it. Mom wakes up a lot during the night and gets afraid often. Especially since she can’t get out of bed alone to use the bathroom and there are usually 2 or 3 people working with 20ish patients who are all being rehabilitated after strokes, hip/knee replacements, etc. It’s hard to get someone to come in quickly enough to get her to the bedside commode.
But, I have to say, I am so proud of my mom right now. She’s not one to follow instructions. And not one to do the physical therapy/occupational therapy and/or follow the rules. She gets pissed and won’t do it. So far, she’s only missed one of her therapy appointments (PT) and that was on the first day. It was the second PT session of the day and she was exhausted after not sleeping the night before. Plus, up until Thursday, she was on a special kind of diet of thickened liquids. She went from Level 3 initially (about as thick as mashed potatoes) to Level 2 (little thicker than pudding.) All food and drink was like this. Meaning she “drank” her water with a spoon. Now, the thickener doesn’t actually taste like anything, but there’s a definite psychological aspect to consuming water with a spoon. So she didn’t really eat for a few days making her much weaker. And wasn’t sleeping well. But, at this point, she’s doing awesome. On Sunday, she could not move her arm or leg. At all. She could feel it, but not move it. Now, she can feed herself with her affected arm – though it’s often a struggle. She can stand, she can walk with a walker at least 60 feet. She can get herself dressed as well as cleaned up. Even the people here – therapists/nurses and her doctor are absolutely amazed at the progress. PT and Speech Therapy had met with her on Monday, prior to being transferred to this unit, just to do an assessment. And even by the time she got here she had improved so much they were amazed. She has a long way to go and still has a lot of limitations, but I’m so proud of her. Like I said, I’ve stayed with her the past two nights. Last night I didn’t actually sleep. My fault – I took a nap in the afternoon because of the rough 2-3 hrs on the hard floor the night before. I can tell that just having me here at night is a huge help for her mentally. And from what I hear, she does much better with her therapies during the day afterwards (though this is just what they said yesterday.) I figure I’ll stay here as long as she wants or needs me to. Some of the nurses are really nice about it – her daytime nurse from the last few days apparently was also quite impressed with me: my knowledge of things most nurses don’t know, my ability to care for her (though I was a nursing assistant at one time for a short while, it’s been years) and so on. And actually her nurse tonight is the son of our neighbor. Small world. Also, her nursing assistant some nights is the mother of one of my friends from high school. She actually remembers me from when I worked here and said she was so sad to see me leave when I did because I was a joy to work with. Makes you feel good to hear that stuff. The other NA worked at the nursing home where I started and nearly went crazy. He apparently had the same experience, though was there for 30+ years. The director there, who often had me in tears, had the same effect on him.
Well, it’s been a long night and is about 30 minutes away from when OT will start coming around to get people up. Depending on if Jeremy works in the AM, Dad should get here between 7 an 8:30. I think today I’ll have him take me right home before coming back up. Otherwise, she goes to breakfast (liking company) then straight into her therapies for the morning all the way until lunch. Then an hour break and more PT. Mom has been very needy since her open heart surgery and if she could she’d have me or dad with her 24/7. Which, actually, is what we’re doing right now. But like I said, I’d rather her be feeling calm and able to sleep so she has the strength to attend every therapy during the day. And although it puts a major crimp in his ability to make money, it’s good that dad is with her during the day so she isn’t quite so afraid to do all the things asked of her. With the amount of progress she’s made in such a short time, I imagine she will only spent maybe 2 weeks in here. And I really think she’s going to get most of her movement and strength back in her arm and leg. Even if she doesn’t, though, she’s learning a lot of work-arounds to compensate for the weakness. The very last part of her therapies will be teaching her to climb stairs which may well take the longest. Unfortunately, our car accident caused her “good” leg – the left one – to have some problems and a lot of pain. Which caused her to always lead with the right. Now she’ll have to do it the other way around because her right leg will likely never be strong enough to lead with again. Oh, one other awesome thing? On Thursday morning – before any therapy of any type – she had to sign some paperwork stating she was letting them do said therapies with her. She’s right handed and used her right hand. And, wouldn’t you know it, her penmanship is absolutely perfect. Takes a little longer, but it looks better than mine!
Well, I’m off to do a few things before my own little shift ends and people start coming. I’d just like to ask you, my loyal readers, to please keep my mom in your thoughts and hopes for a speedy and great recovery. I’m going to try a little harder to write more here. Especially after paying my hosting bill and renewing registration this week. Lots of money for something I often put on the back burner. So, here’s hoping you’ll see more of me. And, you know, that you’ll like that sort of thing.
