My life is an odd balance of good and bad. I never thought I was too superstitious, but when "the good" came in heaping piles earlier this year, I knew something was coming. I wasn't wrong. The last three weeks have been some of the roughest of my life.
I am, unquestionably, lucky and blessed in most aspects of life, which allows me to say (and mean) that I live happily and have a good life. It pretty much goes wrong with my body and health. I am up at 0330 writing this, after all.
Over all the years I used this blog as a platform to keep family and friends updated, I guarantee I've never listed more than half of what is wrong with me. So, I won't start now. But if you've followed me, then you know the biggies: Multiple Sclerosis, Breast Cancer, Valvular Heart Disease, and now Ehlers-Danlos Syndrome (EDS).
EDS is a rare genetic disorder that causes a defect in how the body makes (or doesn't make) collagen. It's a connective tissue disorder. There are 13 subgroups with a lot of overlap between them. Some are diagnosed by symptoms and some by genetic testing. I am pending genetic testing, but I've been confirmed for Hypermobility Ehlers-Danlos Syndrome (hEDS) and I have visual and historical symptoms for Vascular EDS (vEDS). Vascular EDS has a high accuracy rating on genetic testing, so that diagnosis isn't confirmed yet.
I've been given so much to read, it's overwhelming. I think, if I was healthy, it might not seem like such a blow, but given everything else, this is hard. To put it into perspective, when I learned about Breast Cancer, I was home alone. I called my neighbor, who was like a sister, and she rushed over with shoulders to cry on. And then we fought. And we won. I went at the doctors like, "Let's do this! Cure me!" I can't say I didn't cry in the years that followed, but cancer didn't break me. I beat it.
Multiple Sclerosis didn't break me. The uncertainty of my future almost did, but I learned how to reframe my thinking and planning, and that made a huge difference. I've also been in weekly therapy for years to help manage my symptoms. After I first learned I had MS, I went home, put headphones in, and walked around my garden for a while. I'd stop and look out over the field, the back of the house, or just stare blankly at the sky. I was mourning the life I thought I'd have, which I had to do to accept my new life. I can't win against MS, but I can actively fight it. So I do.
EDS . . . wow. I just - I don't know where to start. I've known for the last two years that the doctors were missing something, and that's not a slight against how good they are. I have great doctors. It's a testament to how rare this disorder is. One of my doctors says I'm his "most monitored patient" and he usually sees people twice my age (seriously). So, of course, the first question everyone asks me is, "How did they miss this your whole life?" Because, yes, I was born with this. It's a genetic disorder. Whether I inherited it from one of my parents, both of them, or my genes mutated when I was a fetus, I was born with it and have unknowingly been adapting to it all my life.
EDS answers questions about my life that I didn't even know I had. It's taught me that things I thought were normal about my body are totally not. And that some seemingly benign things, like having super soft skin, are actually symptoms.
So the next question is why did they find it now? I am stubborn with my pain levels. I live in constant pain. I don't want to depend on controlled substances to the point of resistance or dependency, so I will push it until I can't take it anymore. Several of my providers think I'm too hard on myself in that regard, and (responsibly) advise that I treat my pain more than I do. That said, I've been suffering agonizing joint pain for most of this year. It started in my left elbow and then my right knee suddenly got bad, fast. At times, I couldn't put weight on it. Then I woke up a few mornings in a row unable to move my right shoulder without manually manipulating it first.
When I woke up and couldn't move my right shoulder or stand up, I knew I'd pushed it too far. I got in with Rheumatology and was lucky enough to get a doctor who knew what I had by just pressing on my knuckle. There was no collagen between the bones. Also luckily, my health care system has one of three geneticists in the state and she's an EDS expert. They got me in with her the next day. Unfortunately, having a connective tissue disorder with a hypermobility aspect and MS is going make "things very hard" for me. EDS is not understood well, not many doctors know anything about it, and there's not really anything you can do for it other than preventative maintenance like physical therapy or massage therapy, and pain management.
I'm sure you're asking, "Lucky?" Well, yeah. I have answers now. I've been poked and prodded and tested as a medical mystery for so long, it's my normal. My doctors have answers.
My friends and family have questions. Too many questions. It's been overwhelming to get a diagnosis like this with the expectation that I read up on it so I can have an educated conversation with the Geneticist after my test results are back, to process what I'm reading (because it's not great), and to field a thousand questions coming from every angle. I've been filtering info out to family privately and on Facebook as I'm feeling up to it. I have to be ready to tackle EDS to talk about it and I'm still not sure that this isn't the one that breaks me. I certainly feel broken.
As with any diagnosis, in the beginning everyone tries to cram hope and sunshine down your throat. It was the same with MS. From personal experience, that's a shitty thing to do. Giving people hope isn't a bad thing, but the way it's done dismisses the patient's fears and isn't realistic. I've been through it with MS. I mean no disrespect, but I don't need unrealistic hope. I see through the bullshit. I live in my body. I'm not a pessimist. To me, the glass isn't half full or half empty - it can be refilled.
EDS adds the certainty that MS lacks. Those two together are formidable. I am looking at a future of debilitating pain, physical disability, worsening mobility, and no real way to manage any of it. That makes researching this so much worse. I try to stick with facts, but it's good to get an idea of what EDS patients live with and their stories are heartbreaking. At this point, I'd like to acknowledge that this is long and that you have no idea how many times I've had to stop typing because I can't deal with this. Taking even just a second to take in a breath and close my eyes, helps. Like I can lose this reality in that brief dark, respite.
So that's hEDS is a very small nutshell. There's so much too it. It's connective tissue. It's your skin, your tendons, your organs, everything in the soft or connective tissues. I can literally say that I'm literally falling apart at the seams. It's everything.
And that doesn't include the fact that I glossed over vEDS. It's not just me saying that I likely have it. It's my cardiac history, it's my doctors who know about vEDS asking about my heart in that gentle voice that doctors use for delicate issues, it's knowing that I have leaky valves - the valves in the heart that are made of connective tissue. The one, big complication of vEDS (and rarely in hEDS) is that the aortic valve will "slip" and cause massive internal blood loss that leads to a fatal heart attack. Until the geneticist saw the vascular signs, she had started talking about how EDS generally isn't fatal and that hEDS will be minor compared to MS. That speech disappeared quickly and life expectancy wasn't brought up again.
The median life expectancy for vEDS is 48. When MS is the cause of cardiac issues, the median life expectancy is 45. One of those two things is responsible for what's going on with my heart. If that is all true, I have 3-6 years, maybe. And it'll probably happen fast. I've taken many breaks trying to get through this paragraph. I can't stop the tears. I thought I was mourning my life with MS? Wow.
I don't put any of this stuff out there for sympathy or pity. I'm an odd duck with weird things that people don't understand. I try to help them understand. I try to answer questions in one fell swoop instead of repeating myself over and over - that's so stressful. I try to find others like me that I can learn from. I want to share my experiences. I suppose like any of us, I want to know that my life will have mattered after I'm gone. And facing mortality, again in a matter of three years, is a big deal.
I don't know if it ever really occurred to me that I could've died fighting cancer, but I do know that I prepared for the possibility on the surface. I got powers of attorney, a living will, and a DNR order. I made sure that people knew what to do if something went wrong in surgery. I asked my best friend to help my husband unload my geeky collections when he was ready.
But now? This is so different. This is looking at unread books and not knowing if I'll ever read them. It's wanting to research Batman because there are gaps that I want to fill. It's hoping I can go back to Florida one more time before I die. It's hoping I get to finish writing my books so I don't leave my readers hanging. It's truly getting my affairs in my order. Reinstating my DNR. Talking with my husband about what I need to do now to make it easier on him when I'm not here anymore. I can't scratch the surface of this on a deeper level...my husband, my daughter, my granddaughter - I just can't face that yet. So yes, right now, it might seem superficial, but don't judge until you're sitting in my shoes - which I don't like to wear because they make it harder to walk.
I know. It's easy to sit on the other side and say that I don't know what's going to happen. I don't. I could die in a car crash on the way to one of my multiple doctor appointments tomorrow (which actually makes a stronger case for having your shit together to help your loved ones when you pass). I could defeat the odds and live to 92. Most of the people in my family live ridiculously long lives and are tough. But I'm only human, with human fears and emotions, and I can only take so much in stride before I break. I don't like to play what ifs. It's actually something I bring out in my writing. My characters will say that what ifs mean nothing and waste energy. For the most part, that's true. But there is a time and a place where using them to plan is necessary, and this is the time.
Maybe those tests will show I don't have vEDS. Honestly? I'm not going to believe it. There's a 1-2% error margin. That should be a relief if it comes back negative. But I know what symptoms I show and my history. Even if that test comes back negative, it is possible to overlap with hEDS, which I DO HAVE. The good news there is that if we can manage it, I can add a decade or two back (from a cardiac standpoint), and the aortic valve slippage is possible, but rare with hEDS. Which brings me back to pain and disability and a dark hole. Do I want to live longer in agony? Or die sooner? It doesn't really matter what I want. I'm not in control of that.
I control whether I fight or not. And I fight. Pain or agony be damned. I'm a survivor and that's because I fight. Death will win, eventually. None of us can win that fight. But we can fend him off. That's our choice.
Even in a dark hole, I will eventually find light.
Showing posts with label Health Update. Show all posts
Showing posts with label Health Update. Show all posts
Thursday, December 13, 2018
Monday, July 2, 2018
Random Stuff - What I'm Up To
That moment when you want to write something, but sit down and can't think? That's what this is. (laughs) I feel like I have a zillion and a half (the half is important) thoughts zooming through my mind. If I catch one, I'll jot it down and maybe this post will be somewhat cohesive. Fingers crossed.
A few months ago, chest pain took me to the ER twice in two weeks. Abnormal EKGs and another doctor's concern had me held overnight the second time. Since then, I've worn, and returned, a month-long heart event monitor and am awaiting the results. At the moment, the issue remains unexplained. Neurology and Cardiology are working together to figure out the cause: my brain or my heart. (Giggity)
Probably unsurprisingly so, I haven't felt that great lately. I'm experiencing more issues with my arms, which, of course, causes issues with my hands and fingers. Like last summer, I'm hitting extremely hard fatigue walls that knock me out for a few hours. And I'm feeling a greater disconnect between myself and my brain. I swear, I talk about my brain like we share a symbiotic relationship, and that's weird, I know, but it truly feels like it.
This morning I was talking to my cats about finding Cardcaptor Sakura Clear Card on Hulu last night, (there was a huge WHOO-HOO moment when I found the books on Rightstuf). I couldn't get the words right. I kept saying, "Cloudclaptor..." I got frustrated and shut up. (I think the cats were grateful.) But this word slippage and other vocal issues have been getting worse. I mumble now and don't realize it, I put the wrong consonants into words (like Funny instead of Money), and I randomly pick up an Irish or other foreign accent. It's still at that super weird stage that makes us laugh when it happens.
Speaking of Cardcaptor Sakura Clear Card, I love it! Sakura is one of the cutest and sweetest anime/manga characters, and the anime itself is always uplifting with positive interaction between Sakura and her friends. Thankfully, there is no English dub to waste your time with (unlike the original season-don't, just don't). I'm so used to watching the Sub that it'd be odd to hear other voices. Since I am reading the manga, and am current, I'll eventually get to a point where I need to stop watching so I don't ruin the reading experience. So far, it seems that several episodes fit into a book.
I've also been reading the Sherlock manga that essentially takes the BBC show and puts it to paper. It's pretty cool. The lack of color pages does limit what the reader can deduce, which is my only complaint. It's obvious from the first book: A Study in Pink. I missed quite a bit of the pink stuff since it's all in black or white. Otherwise, it's cool to enjoy Sherlock in different mediums. Like with Cardcaptor, I read the books first and then watch the show. I realize this reveals that I'm a late comer to the BBC show, but oh well. With only 3-4 episodes per season, I like the forced pacing. I also enjoy Elementary and the Robert Downey Jr movies. I have the Moriarty novel in my towering "to read" pile, and the collected works of Sir Arthur Conan Doyle. The game is a foot!
My newest obsession is watching (and listening to) the ISS live feed here: http://www.n2yo.com/space-station/. The first few days I watched, it was silent, so it scared the beejees out of me when I was in another part of the house and heard a man talking in the supposedly empty loft. I hadn't noticed the other live feeds on the page and got to watch one of the astronauts (Alex) working in the air lock. It's fascinating! And watching the sun set from the ISS roughly every 20 minutes is otherworldly.
I picked up a book called "Civil War Front Pages" by John Wagman. It is absorbing. It's difficult to read since much of the news print is small. I happened to flip to the day the war ended and was amazed by the headlines, huge and bolded, with giant eagles of victory. I wonder what it was like for people to see that on their newspaper in 1865 after years of a nation torn apart. The grandeur of the headlines spoke volumes.
I'm a bit behind on my comics, but I'm enjoying the Doomsday Clock comic and the Justice League Dark tradebacks - I'm almost done with them. I can't believe Doomsday Clock won't finish its run until next summer! AND! I am so, SO thankful that Netflix picked up Lucifer for season 4! A tv without Tom Ellis on it would be a sad tv. The saddest tv if ever there was. Now it can be happy. ^_^ I'm into the fourth volume of the Lucifer run by Mike Carey (he was created by Neil Gaiman in his Sandman series). It is vastly different from the show, but that's a good thing, I think. Because they are so different, spotting Easter Eggs on the show is extra cool. I'm also still working my way through the Hellblazer tradebacks from the original run. I grew up in the 80s, so seeing it portrayed in comic form as an adult is eye-opening. With few differences, you'd think it was modern day - racism, fear of war, violence, etc. Aside from the supernatural aspects of the story, it's very real and sometimes that makes it hard to read. Not hard in a literal sense - it's like watching the news these days. You need a break from it. Hence - moving slowly.
I think we're going to watch a movie soon, so I need to post this and "run." (I don't run; I hobble.) BUT - we watched Annihilation the other night and it's amazing. Gorgeous shots with a story that doesn't ram itself down your throat. Anyone who's played The Last of Us - watch this. So many of the mutations in the shimmer are reminiscent of scenes in The Last of Us and even from The Evil Within 2. I would love for a game developer to base a game on this movie/book series. It has potential for some really cool things.
Ok, well, I smell popcorn. Confessions is still in the works - I've just taken a small break while other folks are critiquing. I think we'll be on track for a July release. ^_^
PS - there's a promo video for Confessions on my Amazon author page. Watch it! amazon.com/author/kastiepavlik
A few months ago, chest pain took me to the ER twice in two weeks. Abnormal EKGs and another doctor's concern had me held overnight the second time. Since then, I've worn, and returned, a month-long heart event monitor and am awaiting the results. At the moment, the issue remains unexplained. Neurology and Cardiology are working together to figure out the cause: my brain or my heart. (Giggity)
Probably unsurprisingly so, I haven't felt that great lately. I'm experiencing more issues with my arms, which, of course, causes issues with my hands and fingers. Like last summer, I'm hitting extremely hard fatigue walls that knock me out for a few hours. And I'm feeling a greater disconnect between myself and my brain. I swear, I talk about my brain like we share a symbiotic relationship, and that's weird, I know, but it truly feels like it.
This morning I was talking to my cats about finding Cardcaptor Sakura Clear Card on Hulu last night, (there was a huge WHOO-HOO moment when I found the books on Rightstuf). I couldn't get the words right. I kept saying, "Cloudclaptor..." I got frustrated and shut up. (I think the cats were grateful.) But this word slippage and other vocal issues have been getting worse. I mumble now and don't realize it, I put the wrong consonants into words (like Funny instead of Money), and I randomly pick up an Irish or other foreign accent. It's still at that super weird stage that makes us laugh when it happens.
Speaking of Cardcaptor Sakura Clear Card, I love it! Sakura is one of the cutest and sweetest anime/manga characters, and the anime itself is always uplifting with positive interaction between Sakura and her friends. Thankfully, there is no English dub to waste your time with (unlike the original season-don't, just don't). I'm so used to watching the Sub that it'd be odd to hear other voices. Since I am reading the manga, and am current, I'll eventually get to a point where I need to stop watching so I don't ruin the reading experience. So far, it seems that several episodes fit into a book.
I've also been reading the Sherlock manga that essentially takes the BBC show and puts it to paper. It's pretty cool. The lack of color pages does limit what the reader can deduce, which is my only complaint. It's obvious from the first book: A Study in Pink. I missed quite a bit of the pink stuff since it's all in black or white. Otherwise, it's cool to enjoy Sherlock in different mediums. Like with Cardcaptor, I read the books first and then watch the show. I realize this reveals that I'm a late comer to the BBC show, but oh well. With only 3-4 episodes per season, I like the forced pacing. I also enjoy Elementary and the Robert Downey Jr movies. I have the Moriarty novel in my towering "to read" pile, and the collected works of Sir Arthur Conan Doyle. The game is a foot!
My newest obsession is watching (and listening to) the ISS live feed here: http://www.n2yo.com/space-station/. The first few days I watched, it was silent, so it scared the beejees out of me when I was in another part of the house and heard a man talking in the supposedly empty loft. I hadn't noticed the other live feeds on the page and got to watch one of the astronauts (Alex) working in the air lock. It's fascinating! And watching the sun set from the ISS roughly every 20 minutes is otherworldly.
I picked up a book called "Civil War Front Pages" by John Wagman. It is absorbing. It's difficult to read since much of the news print is small. I happened to flip to the day the war ended and was amazed by the headlines, huge and bolded, with giant eagles of victory. I wonder what it was like for people to see that on their newspaper in 1865 after years of a nation torn apart. The grandeur of the headlines spoke volumes.
I'm a bit behind on my comics, but I'm enjoying the Doomsday Clock comic and the Justice League Dark tradebacks - I'm almost done with them. I can't believe Doomsday Clock won't finish its run until next summer! AND! I am so, SO thankful that Netflix picked up Lucifer for season 4! A tv without Tom Ellis on it would be a sad tv. The saddest tv if ever there was. Now it can be happy. ^_^ I'm into the fourth volume of the Lucifer run by Mike Carey (he was created by Neil Gaiman in his Sandman series). It is vastly different from the show, but that's a good thing, I think. Because they are so different, spotting Easter Eggs on the show is extra cool. I'm also still working my way through the Hellblazer tradebacks from the original run. I grew up in the 80s, so seeing it portrayed in comic form as an adult is eye-opening. With few differences, you'd think it was modern day - racism, fear of war, violence, etc. Aside from the supernatural aspects of the story, it's very real and sometimes that makes it hard to read. Not hard in a literal sense - it's like watching the news these days. You need a break from it. Hence - moving slowly.
I think we're going to watch a movie soon, so I need to post this and "run." (I don't run; I hobble.) BUT - we watched Annihilation the other night and it's amazing. Gorgeous shots with a story that doesn't ram itself down your throat. Anyone who's played The Last of Us - watch this. So many of the mutations in the shimmer are reminiscent of scenes in The Last of Us and even from The Evil Within 2. I would love for a game developer to base a game on this movie/book series. It has potential for some really cool things.
Ok, well, I smell popcorn. Confessions is still in the works - I've just taken a small break while other folks are critiquing. I think we'll be on track for a July release. ^_^
PS - there's a promo video for Confessions on my Amazon author page. Watch it! amazon.com/author/kastiepavlik
Tuesday, December 12, 2017
Nothing in life worth doing is easy.
Many articles and blogs tell new authors to become an "expert" in something to engage their readers. I'm knowledgeable about a lot. And I'm weird. I suppose I could be an expert at being odd.
Then I realized I am in a somewhat unique position of being both odd in nature and odd medically. I'm like the newly found bug in a jar to be studied and never understood. That gives me a platform.
It should be obvious by now that I have Multiple Sclerosis (MS) and have survived breast cancer. I have host of other secondary conditions, such as autonomic dysfunction of the heart, bowel, and bladder, asthma, migraines, early stage congenital heart failure, and degenerative disc disease (to name a few). I am hypersensitive and my body decompensates for any strong emotion, good or bad, and stress, which manifests in physical form and in cognitive impairments. I walk with a cane and will look ghastly ill when I push myself too hard. While shopping yesterday, a store clerk actually asked me if I was ok. I wish I could say that's the first time, but I can't.
For the first time since The Arrival's release, I am opening up honestly about how I'm doing.
2017 has been a particularly stressful year. My best friend (soul sister) and informal caretaker passed away suddenly after the New Year. I was lost without her. No friend. No caretaker. I missed her so much. I still do. It hurts. It sucks.
I wore myself into the ground, got sick, and wound up in bed for 3 weeks. In my grief, I ate junk food and gained 10 pounds. Then I got back to my normal, healthy diet and lost 10 pounds. My husband's job got super stressful and he had to make the difficult decision to retire his K-9 partner. During all that, a worrisome cyst was found on an ovary, and I'm high risk for ovarian cancer (and bladder cancer and colon cancer, and, well, cancer is always the first thing my doctors rule out now).
I spent 3 months planning our first real vacation in a decade - literally tackling one medical need per day to cover all my bases with the airline and destination. I was burned out on vacation before we ever left. My husband chose to pursue a new career outside of law enforcement once the K-9 stuff was all worked out, and that was pending when we left on our trip.
We went to a beautiful resort in Ft. Lauderdale, luckily the only place in Florida left largely untouched by Hurricane Irma. Boy did we need it. But this is what it took to carve those 5 days of peace and relaxing from our lives: we got back late and I'd taken my bedtime meds on the plane, so I was a zombie when we got home and crawled upstairs to bed. At 8:15 a.m., my husband dropped me off at the hospital and I went to Radiology to get three veins blown and one successful IV placement for an abdominal MRI to find out if I had ovarian cancer. Meanwhile, my husband returned home, got his squad, picked up his K-9 partner from the doggie spa, and took him home, where he got the dog settled and then swapped vehicles back to our car to meet me at the clinic in neurology where I was awaiting trigger point injections. After those lovely dots of torture, we returned home, I went to bed, and shortly thereafter, my husband went for his formal interview. In the short time he had afterward, he raced home, swapped vehicles again to the squad to take the dog to the vet because he'd had a benign tumor cut off his leg several weeks prior and he had a follow up given some healing complications. Then my husband came home, and I can only assume he dropped onto the couch to sleep, because I was still out. I'm fairly certain he made dinner, because I know I didn't. (He got the job, the dog is happily retired, and I don't have ovarian cancer.)
I have at least one medical appointment every week, but usually 2 or 3, and for months this summer I'd been doing physical therapy every week. We had to juggle our schedule drastically, as that one day illustrates, just to take a 5 day vacation. It's crazy insane. Just like the bar scene in Weird Science. Crazy. Insane.
So, in addition to all that, I published The Arrival, my husband's dog retired, my husband switched jobs, and over the course of all this, I've had issues with no appetite, low blood pressure, fatigue, and malnutrition. Oh, and some mysterious thing with my knee that no one can solve, but that results in my femur being bruised, which is common in athletes, but is happening to me when I get into bed. I don't know about you, but for me, getting into bed is not a contact sport. I am pending a 2nd MRI to look at the bruise since I injured it again a few weeks ago. It'll be the 6th MRI for 2017. I can't count the number of add'l ultrasounds and x-rays.
What does all this mean? It's stress. All of it. Publishing my book is good. My husband getting a new job is good. But it's stress. And I'm not handling it well. It's beyond my control. In addition to the MS effects on my body and brain, I tend to stop eating when I'm stressed. Starting the year off with the death of the person closest to me should indicate how stressful 2017 has been. I must have gotten to a point where my body went into starvation mode in a way it never has before. I already had problems with low bp and fatigue, and lack of fuel only made it worse. And I've been healing from my last surgery, too - surgeons had to redo my breast reconstruction in October 2016 due to complications with MS and scar tissue. I was inpatient for 7 days (it's an out-patient procedure). and I still feel the effects of that recovery.
So, how bad is bad? I forget that my dog is a dog. I call my cats by the names of the cats that preceded them. I thought I put the car into park in the garage . . . but I put it into drive. Luckily, I had my foot over the brake. The last time . . . I wasn't even in the car. It parked itself in my husband's grill and shattered an antique table being stored in the garage. This is known as my "don't burn down the house" state (yeah, I forgot candles are burning and will leave on errands). We call it that because I literally started a fire at our house when I forgot I was cooking something and disappeared into another room distracted by some other task. I need Post Its to remember just about anything, I have the attention span of a squirrel, I mess up or forget meds, and my husband and I have the same conversation several times over the course of a day. I can't follow written or oral instructions, I get lost easily, and I've fallen 3x in the last 2 weeks from blood pressure drops, and another several times from my MS messing with my legs. I'm tired all the time and hit impassable fatigue walls, yet I suffer from insomnia - which explains why I'm up at 0213 writing this even though nearly every medication I take before bed is sedating. I should be blissfully asleep, but my brain won't shut up. It's racing on the hamster wheel down a steep incline that never ends.
I'm not complaining. This is my life. It's just how it is. I know I'm in a danger zone (cue Archer) and I'm slowly tackling things one thing at a time. One doctor wants me drinking high protein Ensure (check), another added another antacid to my meds (check - do you remember the movie The Disorderlies with the Fat Boys? And how they played poker with the old dude's meds? Yeah, I could do that.). I'm eating dinner every night, even if it's just cereal, and I'm napping when I need to. I've canceled all my appointments for this week so I can have a week off and I'm under orders to take consecutive "chill" days and to do things I want to do and not necessarily things I need to do (such as play a video game instead of cleaning the house). I've been in bed a lot reading (when I can focus on it). Otherwise, I vegetate to Netflix under a mound of blankets and cats.
I have the good fortune of having excellent doctors. Doctors who actually worry about me and care. And understand. That is key! But, I'm lost. To be perfectly honest and frank, I'm lost. I keep hitting a mental block and can't move past it. And when I get like that, it's hard coming back. I'm trying to do what I need to. I will get through it. I have in the past. I've been dealing with this since 2008. But this is the worst I've been in a long time. My therapist said I haven't been like this since before I had to quit working.
I was worried about that with publishing the book. I had doubts I'd be able to handle it. Or be able to publish the next one, which is written and edited. My biggest concern is being able to write the 3rd one. It's in pieces and I have to have a brain I can trust in order to write it. But you know, that's a future issue that I can tackle in the future. For right now, I'm doing what I need to do and when I get better, I can start adding stuff back in.
So there's a look at my current state of life. No complaints, just forging ahead. Because really, that's all we can do. Despite it all, I'm happy. I love my husband. And I love that he's happier at the new job. I love the dog (it's my first dog, ever) and I love my cats (my herd). My life isn't easy, but if it was, it wouldn't be worth it, would it? Nothing in life worth doing is easy.
Then I realized I am in a somewhat unique position of being both odd in nature and odd medically. I'm like the newly found bug in a jar to be studied and never understood. That gives me a platform.
It should be obvious by now that I have Multiple Sclerosis (MS) and have survived breast cancer. I have host of other secondary conditions, such as autonomic dysfunction of the heart, bowel, and bladder, asthma, migraines, early stage congenital heart failure, and degenerative disc disease (to name a few). I am hypersensitive and my body decompensates for any strong emotion, good or bad, and stress, which manifests in physical form and in cognitive impairments. I walk with a cane and will look ghastly ill when I push myself too hard. While shopping yesterday, a store clerk actually asked me if I was ok. I wish I could say that's the first time, but I can't.
For the first time since The Arrival's release, I am opening up honestly about how I'm doing.
2017 has been a particularly stressful year. My best friend (soul sister) and informal caretaker passed away suddenly after the New Year. I was lost without her. No friend. No caretaker. I missed her so much. I still do. It hurts. It sucks.
I wore myself into the ground, got sick, and wound up in bed for 3 weeks. In my grief, I ate junk food and gained 10 pounds. Then I got back to my normal, healthy diet and lost 10 pounds. My husband's job got super stressful and he had to make the difficult decision to retire his K-9 partner. During all that, a worrisome cyst was found on an ovary, and I'm high risk for ovarian cancer (and bladder cancer and colon cancer, and, well, cancer is always the first thing my doctors rule out now).
I spent 3 months planning our first real vacation in a decade - literally tackling one medical need per day to cover all my bases with the airline and destination. I was burned out on vacation before we ever left. My husband chose to pursue a new career outside of law enforcement once the K-9 stuff was all worked out, and that was pending when we left on our trip.
We went to a beautiful resort in Ft. Lauderdale, luckily the only place in Florida left largely untouched by Hurricane Irma. Boy did we need it. But this is what it took to carve those 5 days of peace and relaxing from our lives: we got back late and I'd taken my bedtime meds on the plane, so I was a zombie when we got home and crawled upstairs to bed. At 8:15 a.m., my husband dropped me off at the hospital and I went to Radiology to get three veins blown and one successful IV placement for an abdominal MRI to find out if I had ovarian cancer. Meanwhile, my husband returned home, got his squad, picked up his K-9 partner from the doggie spa, and took him home, where he got the dog settled and then swapped vehicles back to our car to meet me at the clinic in neurology where I was awaiting trigger point injections. After those lovely dots of torture, we returned home, I went to bed, and shortly thereafter, my husband went for his formal interview. In the short time he had afterward, he raced home, swapped vehicles again to the squad to take the dog to the vet because he'd had a benign tumor cut off his leg several weeks prior and he had a follow up given some healing complications. Then my husband came home, and I can only assume he dropped onto the couch to sleep, because I was still out. I'm fairly certain he made dinner, because I know I didn't. (He got the job, the dog is happily retired, and I don't have ovarian cancer.)
I have at least one medical appointment every week, but usually 2 or 3, and for months this summer I'd been doing physical therapy every week. We had to juggle our schedule drastically, as that one day illustrates, just to take a 5 day vacation. It's crazy insane. Just like the bar scene in Weird Science. Crazy. Insane.
So, in addition to all that, I published The Arrival, my husband's dog retired, my husband switched jobs, and over the course of all this, I've had issues with no appetite, low blood pressure, fatigue, and malnutrition. Oh, and some mysterious thing with my knee that no one can solve, but that results in my femur being bruised, which is common in athletes, but is happening to me when I get into bed. I don't know about you, but for me, getting into bed is not a contact sport. I am pending a 2nd MRI to look at the bruise since I injured it again a few weeks ago. It'll be the 6th MRI for 2017. I can't count the number of add'l ultrasounds and x-rays.
What does all this mean? It's stress. All of it. Publishing my book is good. My husband getting a new job is good. But it's stress. And I'm not handling it well. It's beyond my control. In addition to the MS effects on my body and brain, I tend to stop eating when I'm stressed. Starting the year off with the death of the person closest to me should indicate how stressful 2017 has been. I must have gotten to a point where my body went into starvation mode in a way it never has before. I already had problems with low bp and fatigue, and lack of fuel only made it worse. And I've been healing from my last surgery, too - surgeons had to redo my breast reconstruction in October 2016 due to complications with MS and scar tissue. I was inpatient for 7 days (it's an out-patient procedure). and I still feel the effects of that recovery.
So, how bad is bad? I forget that my dog is a dog. I call my cats by the names of the cats that preceded them. I thought I put the car into park in the garage . . . but I put it into drive. Luckily, I had my foot over the brake. The last time . . . I wasn't even in the car. It parked itself in my husband's grill and shattered an antique table being stored in the garage. This is known as my "don't burn down the house" state (yeah, I forgot candles are burning and will leave on errands). We call it that because I literally started a fire at our house when I forgot I was cooking something and disappeared into another room distracted by some other task. I need Post Its to remember just about anything, I have the attention span of a squirrel, I mess up or forget meds, and my husband and I have the same conversation several times over the course of a day. I can't follow written or oral instructions, I get lost easily, and I've fallen 3x in the last 2 weeks from blood pressure drops, and another several times from my MS messing with my legs. I'm tired all the time and hit impassable fatigue walls, yet I suffer from insomnia - which explains why I'm up at 0213 writing this even though nearly every medication I take before bed is sedating. I should be blissfully asleep, but my brain won't shut up. It's racing on the hamster wheel down a steep incline that never ends.
I'm not complaining. This is my life. It's just how it is. I know I'm in a danger zone (cue Archer) and I'm slowly tackling things one thing at a time. One doctor wants me drinking high protein Ensure (check), another added another antacid to my meds (check - do you remember the movie The Disorderlies with the Fat Boys? And how they played poker with the old dude's meds? Yeah, I could do that.). I'm eating dinner every night, even if it's just cereal, and I'm napping when I need to. I've canceled all my appointments for this week so I can have a week off and I'm under orders to take consecutive "chill" days and to do things I want to do and not necessarily things I need to do (such as play a video game instead of cleaning the house). I've been in bed a lot reading (when I can focus on it). Otherwise, I vegetate to Netflix under a mound of blankets and cats.
I have the good fortune of having excellent doctors. Doctors who actually worry about me and care. And understand. That is key! But, I'm lost. To be perfectly honest and frank, I'm lost. I keep hitting a mental block and can't move past it. And when I get like that, it's hard coming back. I'm trying to do what I need to. I will get through it. I have in the past. I've been dealing with this since 2008. But this is the worst I've been in a long time. My therapist said I haven't been like this since before I had to quit working.
I was worried about that with publishing the book. I had doubts I'd be able to handle it. Or be able to publish the next one, which is written and edited. My biggest concern is being able to write the 3rd one. It's in pieces and I have to have a brain I can trust in order to write it. But you know, that's a future issue that I can tackle in the future. For right now, I'm doing what I need to do and when I get better, I can start adding stuff back in.
So there's a look at my current state of life. No complaints, just forging ahead. Because really, that's all we can do. Despite it all, I'm happy. I love my husband. And I love that he's happier at the new job. I love the dog (it's my first dog, ever) and I love my cats (my herd). My life isn't easy, but if it was, it wouldn't be worth it, would it? Nothing in life worth doing is easy.
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