2015 is coming to an end. I wish I could say that I am now in remission, but I still have a long way to go. I have been torn down many times, beyond discouraged, but there has been a lot of positive things that have happened along the way this year. As I always say, there is always good and silver linings, you just need to find them. I try my very best to hold onto these memories and accomplishments the very best I can.
This is my reality. My violins. Don’t you worry, you will get to read and see some of the most meaningful positives of the year, no matter how big or small, that make me do the “happy couch dance”.
I look totally different than I have the past few years. Other than looking like I have had no sleep (I often sleep 12-15 hours a day, even though people don’t “get it” and tell me that oversleeping is why I feel the way I do….) and I hangover, sometimes a tinge of gray, I look normal. My weight is stable, I don’t tic as much as I use to. I am now facing more of an invisible illness.
Compared to years before, I was pretty much in a vegetative state. My body was shutting down. I was not okay. If this makes any sense to you, I know I am technically okay. I am not dying. Before, that is where I was headed. I was completely unaware of how sick I really was. I was just there. Somewhere in outer space. I am no longer like that, although still very disabled and sick, but now, I feel every little thing. EVERYTHING. Not that it was a good thing to be as sick as I was, but all those terrible things that were happening were just a blur. It is so hard now, realizing every little ache, every neurological symptom, and being much more aware. Yet it is just about a complete invisible illness…. unless you see me crash and burn.
Over this past year, I have continued to slide downhill and have lost more independence. The numbness, dizziness, fog, and exhaustion are very overwhelming. There are many days that I have no feeling in my legs and feet, and having POTS, I have collapsed and passed out many times. I have found myself waking up on the bathroom floor on several occasions or somewhere in my house. Dave even used one of those pallet thingamabobbers with wheels to wheel me out of Lowe’s after an episode.
I had to laugh one day leaving the hospital for some routine blood work. I parked my car as close as I possibly could, and next to me, was a little old lady with her walker, passing me as I was walking to my car. Snail versus turtle I guess. The turtle won. Haha.
I am still very sensitive to lights and sounds. I can’t go to places that have bright lights, flashing lights, or are very busy. It is almost like a wave comes over me, and I turn from “as okay as I can be”, to very not okay. My friend and Dave have had to carry me out mid meal and take me home. Often these lights, as well as elevators surprisingly, trigger my tics.
I have Babesia hot flashes, and when I wake up in the morning, I am completely drenched in sweat. It looks like I hopped in the shower and went straight to bed. Dave tells me that he kisses me every morning before he goes to work, and it is like kissing raw meat. Gross. Other days, I am wearing a winter jacket while my house is nearly 80 degrees, and have a few blankets over me while I lay there. I am completely freezing. My liver and spleen have also been enlarged for most of the year, accompanied by chest pains, thanks to Babesia. That parasite is evil and a bitch to get rid of.
There have been days I have completely forgotten where I am driving, where I left from. I do not recognize where I am at all. I have been lucky that I only allow myself a very small radius to drive, and I eventually recognize a house, a building, a sign…
Dave has had to be a “supervisor” to have me bathe, as I tend to black out in the shower. He changed the settings of the shower thinking it may just be too hot, as I can’t tell hot from cold very well, but from what doctors have told me, this is a misfiring of my autonomic system.
Many times I have found myself sitting in my car at a place to run errands, and I know I just plain can’t do whatever I need to do. Go into the bank. Pick up a prescription. I have bawled my eyes out in frustration, had full fledged panic attacks which include vomiting all over myself, and then comes the seizures.
I drove home once only to have a cluster of seizures. I had a partial one, that was minor in my case, as I remembered it and didn’t have the joy of pissing myself, and then the type of seizure I hate the most: tonic. I suppose the best way to describe this type of seizure is turning into a complete mummy. Frozen in ice. Generally, my hands do a weird raptor claw thing which can be painful, and I have fallen off the couch before because I obviously have no balance if I am laying on the edge of it. Fortunately, Dave has been home for a lot of these sorts of things, and it tends to happen when I really overdo it, or if I am a dumb dumb and forget my seizure meds.
The good the bad the ugly… there have been many a times that I have completely lost control of my bowels and bladder. Super fun. Sometimes you just have to joke around.. it is one of the ways to keep your sanity dealing with this sort of thing. One time very late at night, I woke myself up in a big ol’ puddle. For real? Dave grabbed the “bad dog kit”, the plastic grocery store bag with a spray bottle of Lysol and a roll of paper towels. Spray spray spray. Pat down. It is late at night and I am out of it. I just switch my pajama bottoms while he places several paper towels down on the patted down piddle spot, and back to bed I went. Good enough. We will change the sheets tomorrow. LOL
My two nightmares throughout the year include dealing with my cardiologist, and a certain medication’s side effects.
I had an electronic heart device implanted in my chest the beginning of this year. It was suppose to be a 3 month thing, and now I am going on 11 months. This little thing, about the size of a stick of trident gum has brought me hell. I have never felt so angry or mistreated by a doctor. Long story short, the cardiologist illegally changed my paperwork from tachycardia of unknown origin to being a heroin and opiate user. What? A) I had never been drug tested so you cannot put that in my medical charts, Bub. B) You cannot just change paperwork, and thank you so much, that gets sent to my army of doctors. Their staff continuously told me I partied all night and abused drugs, and that was my problem.
I told the cardiologist exactly what was wrong with me, POTS, as my LLMD suggested it, and my symptoms of dizziness upon standing and standing for short amounts of time caused this issue, when your blood pressure drops significantly, mostly because of my poor circulation and my blood pools in my feet, and my heart then makes up for it, causing the tachycardia. I think pride took over, maybe.
When I saw that my paperwork was changed, I called and mentioned the word, “lawyer”, and it was changed back that very same day. I wanted to clear my name so I had Dr S give me a full, everything under the sun drug testing panel since my GP, who is pretty much up the cardiologist’s butt since their offices are next to one another would not help me and said it was unnecessary, and low and behold, everything was negative. I happily handed out my results with an underlined, “I told you so.”
I then got sent to an electrophysiologist (the jerk didn’t want to deal with me anymore so he pawned me off), who was kind and listened. Within a few minutes of talking, he totally agreed with my diagnosis. POTS. He gave me a new medication, some exercises and diet to follow, and although not a cure all, I have seen a lot of improvements.
I don’t know if I have really fully explained this at all on my blog. I don’t know if it was a side effect of the drug, brain swelling, massive toxicity bugs stirring…
I have taken this medication for years without any side effects. In fact, it was my very favorite IV and one of the most helpful. It was like an instant fog clearer. It all came to an end though. The first week I took it after several rounds of this very same protocol. I began to feel anxiety and depressed. Paranoia. Hmm.
I had a two week break in between starting treatment again, and this finally lifted. I am not usually like this at all. I am pretty much a carefree, go with the flow, happy person. It scared me a little bit, but I pushed that worry aside and continued on with treatment.
This time, it got bad. Incredibly bad. It was probably the very worst feelings I have gone through in my entire life. I wish this upon no one. I tend to hallucinate sometimes at night, spiders and figures, and they amplified incredibly. That at least I know isn’t real. It is more annoying, and it gives me the creepy crawlies as I see these spiders all over me that really aren’t there. The depression, anxiety, and paranoia came back ten fold. Then… I began to hear voices. Voices telling me that I am worthless, that no one cares about me, that I would not be missed. “Go on, kill yourself”. I began to actually get to the point that these voices inside my head ponder as to how I would do it. Shooting myself would make a nasty mess. I don’t have a ceiling fan. What to do, what to do.. The only way I had any peace to drown out these voices was to sleep. It would take forever to fall asleep, but I somehow did. I would think and watch every little thing in my life, as if is was on an old film. Ugly things. Things I have blocked out for years that I have chosen not to remember.
It needed to stop. I never complain to my doctor but I needed to say something. I will admit, they aren’t the quickest at getting back to patients, but they called me within the hour, switching my medication and taking the situation very seriously.
It took about a month to finally get to a better frame of mind. A very very long month. I hope to never feel that way again, and I am so lucky that I never acted upon these voices or extreme depression, and continued to tell myself over and over that this is not real, that these voices are telling lies, that none of it was true. I do matter.
Now, onto the good! There has been a lot of good that has held me together.
Some days, it had seemed like a weight had been lifted off of me. They may not have been as big of accomplishments as when I was on the IVs still, but they were a huge deal. Moments of “blue skies”, as Dr J calls them.
Okay. I am going to be honest here. I am getting pretty tired and I think I will bullet my good times this year.
– I have had many improvements with the Lupron shot, after the first few week’s side effects which included a lot of weight gain and edema, The gynecologist was using as a diagnostic tool instead of surgery, as I tend to do very poorly and we were trying to avoid that at all cost. I am so glad that things have gotten better for me in that perspective.
– Thumbs up!!!! This is what happiness looks like. I was all done my meds until I was going to go back to DC. This was one of those days it wasn’t even worth trying to wash my hair or shower with Babesia kicking my ass, I had jaundice in my hands, my blood pressure meds were not working so my feet look liked they were ready to fall off, tachycardia, and my eye ptosis was kicking in… BUT! I did some cleaning, took Cooper to the vet that day, which is a huge drive for me. I made it to the store to get a bag of dog food. 20 pounds is more than I have been able to lift in years (yeah I know pretty pathetic) but I manhandled that bag without asking for help, went to the bank, AND got called into work that day. That is pretty bad ass.
– Rite Aid is my nemesis. I can’t handle the lighting whatsoever or navigating thru the store. I’ve sent Dave and my lady love to grab things for me, but that particular day I had to do things on my own. After talking to a few friends, I was convinced to wear my sunglasses in the store which I get embarrassed about and I got just about everything I needed!
I might have ticked a bit, got a few looks, swayed in line, felt lightheaded and had to sit in my car for awhile shaking and couldn’t feel my legs before going home and was complete toast but I did it. It was a friendly reminder that I should never give up an try to find a way to make things work if I can.
I don’t really know if this is a positive, but I have had a terrible habit of ordering random items online over the year. Kitty tee shirts, sweaters, even one of those control tops that holds everything in. Needless to say the laptop gets closed early, as these shopping sprees happened late night. At least I never had any recollection of buying all the stuff, so when packages came piling up at my door, it almost felt like Christmas.
– I was very proud of myself when I took the longest drive in 3 ½ years for me to my neighboring town, and did a full grocery shopping trip, all my myself! I hadn’t even been able to wash my hair or shower without Dave being there in case I fell down so this was a big deal to do something hard that morning.
Unfortunately, people were rude and stared at me for the way I walked and rocked back and forth, and for my thriller dance hand, my legs buckled from under me at the register waiting in line, but was trying to not let that get to me. All I can say is I did it! Screw what other people think.
-Dave now takes me on occasion shopping trips at the local grocery store. By the time it is time to check out, he gives me the keys to go out to the car, but I can at least make almost a full trip on better days.
My beach day. I was down in the dumps, roughly when I was healing from the medication that could have killed me, and Dave surprised me with a little getaway. Although I could only walk about half the beach compared to the full when I was doing better, there was smiles for miles. Wells Beach in Maine is probably one of my favorite places on Earth. Not only is it a lovely little beach, but I have so many happy memories tied to it with my family as a kid.
– My Dad got this recumbent bike for me, and I have been trying to use it as often as I can. I was so excited when I got it, and even made it up to 15 minutes on it! I got mono in September so it was a little setback on using it, but I am back to it and am doing really well!
This was a great day. A little adventure up to the top of a mountain. It is a bumpy ride and takes a few hours, but I made it. Dave loves wheeling and I use to be his partner in crime, so I know this meant a lot to him too.
– There are still good people out there. Friends that I love. I have come home to a surprise clean house and gardening done, doesn’t judge or question me. That I know actually cares about me. A friend who will just sit by my side and watch movies, or chit chat. And is completely fine with it. My family.
Dave. I could say do much about how much I love and appreciate him. Although he may have the Michael Myers theme song as his ringtone for me, I know he loves me. Without a doubt. He has ben my caregiver, my support, EXTREMELY patient, and he makes me laugh every single day.
The beginning of 2016, I will be getting my heart monitor out. I am so excited, and feel like that chapter of my life will be over.
My entirely new protocol also will start next week. I am optimistic that this change will be exactly what I needed. A new year, a fresh start! Wishing you all good health in this year to come!