Friday, September 21, 2018

Dear {Insert Name Here} #1

Dear {Insert Name Here}

You'll know who you are if you happen upon this. If you're not sure whether it's you, then it's not. Get it? You'll KNOW if it's you. I don't mean that to sound trite, I'm actually throwin' out a loose disclaimer before I begin, because my aim is NOT to offend or hurt anyone. 

Anyway... where was I? 

I have always felt terrible about the way I treated you as a teen. I sort of dropped the ball of humanity, I blame immaturity, but I'm aware it was tough on you. I'm going to be transparent. So I'll share my dirty lil truth here. 
When you kissed me, you had a LOT of saliva in your mouth. It was just too much for me. That's why I broke up with you. I did not want to hurt your feelings by telling you, but I also couldn't just fake my way through kissing you if I didn't like it. I started dodging you when you seemed to seek more answers. I was such a betch, as I've often admitted aloud. I'm sorry if I was cruel. 
You had so many good qualities, I overlooked them. I hope life has treated you well. 
Bex

Thursday, September 20, 2018

Perspective

Have you ever had a toxic relationship with someone, and considered yourself the 'victim'? Or, you cringe every time someone opens their mouth, as you've become Pavlov conditioned to do, simply because they don't have the same opinions as you?
Have you ever thought about that relationship from a completely different perspective?
Try this:
Imagine that EVERY negative 'rub' involved in that relationship was seeded with something YOU did or said, and every word they say, or don't say, now, is a REACTION, or response to what you, in fact, had begun. Even if you INSIST they "started it" .... just pretend it's your fault. Maybe for over a decade, you've allowed a relationship to deteriorate. You're SURE you are the victim. What if you're not. Now what do you do? I recently decided to view a changed relationship as though I was never the victim, but THEY were. I'm astounded at how much I now "get" their improper behaviors. I'm stunned, really. And now I feel as though it's my responsibility to get this "out there" ...
I will elaborate on the subject as soon as I have the energy to put my thoughts into words. Nap time. Now enjoy this lil cutie creeping across my hand, while I rest.




Wednesday, September 12, 2018

I miss...

I miss spontaneity. 
I miss muscles.
I miss energy.
I miss coffee.
I miss being pain-free.
I miss sound sleep.
I miss bar hopping.
I miss coffee dates with Zack.
I miss brunch and pedis with Sam.
I miss Dyl being a mama's boy.
I miss Peyton remembering me healthy. 
I miss being the fun spouse.
I miss road trips with Tina. 
I miss baking/cooking. 
I miss a clean home.
I miss the NY Times Crossword in PEN. (completed!)
I miss Scrabble. (winning!)
I miss theater dates. 
I miss Stephen King. (my cognitive ability is messed up, I can't read and retain the words any longer, even though I've been reading and loving him since I was in high school. 
I miss girl's night. And day. And everything in between.
I miss wedding receptions, family reunions. 
I miss the holidays. 
I miss looking healthy. I miss me. 

I'm a bit broken, but I'm still ALIVE!

As one does when left to their own devices, for many hours of each day, I've pondered my condition more than I'm comfortable admitting, but it's not always a pity party. There's still a muthafuckin' Taurus in here, I am NOT about to just accept a life sentence without a bit of push back. 
That's led to MANY small steps to improve my health, whether or not it magically heals me. 
(spoiler alert: nothing "cured" me... magic is an illusion)
July 2017, I weaned off of ALL Rx pain medicines, and since, have used only cannabis and essential oils for pain management. (That's my SUPER POWER) 

When I was learning to live with this fuckfest, I initially tried to consume more coffee to increase my energy levels (didn't work at ALL) and to try and be more alert. At first, I did not realize the brain fog was here to stay. I thought it was connected to the onset of this illness, but I thought it would level out when my system adapted to being chronically ill. Yeah, that was denial. So, after realizing that the caffeine could not 'help' in any way, I decided that I should just stop putting it in my body. I haven't banned the substance, and I still love the smell of fresh brewed coffee, but I stick mostly to tea now. Better for me, and just as yummy. I drink as much water as I can, even adding those magical essential oils to enhance the flavor. 

This might sound trite, but I am being straight here. If I was back in Elementary School with this level of cognitive deficit, I would have been diagnosed with a moderate learning disability. I often feel trapped in my own head, frustrated because words have ALWAYS come easily to me, and they make me work very hard after 11 years. The worst consequence (in my whiny world) is the fact that I am no longer able to enjoy the newer works of my favorite author, Stephen King. As one who used to inhale his words, I struggle to recall what I've read, and make sense of said words. That's been a struggle. I rely on my Kindle almost as another appendage. But in the past decade, I've been painfully aware of the decline. It's increased in the past 2-3 years, to the point that I struggle to find the word I want when talking. That can be scary, as I did have a leaking brain aneurysm when I was 23, but I'm confident that it's "only" due to my current condition, and not a call for another brain surgery. (haha?)
I've replaced commercial deodorant, shampoo, conditioner, bath products, lotions, perfume. I make my own, using carrier oils, cocoa butter, shea, aloe, beeswax, etc. It's pretty easy to cut out the artificial scents etc. I thought it would be more difficult to sever my relationship with Bath and Body Works products, but it was actually easy. (Well, I had incentive to try and improve my health) 
What's especially interesting is that when I smell those products now, they actually induce headaches, and they overpower my nose. I cannot believe I lathered myself with those chemicals for decades, I've been self-poisoning for years. Yuck. Well, when you know better, you do better. Right?

I've tried to have an open mind when people tell me they have the "perfect" way to cure me. I will try almost anything once, maybe more, if it improves my quality of life. But don't be insulted if I disregard your diagnosis. There's NOT going to be an improvement if I "get outside" more. Nor will I suddenly be healthy if I "think positively" . I know most of this comes from a good place, so I try to be patient, but I admit, I'm only human, I may get a lil salty if you advise me as though you know my body better than my doctors. 





Saturday, September 8, 2018

TRANSPARENCY WITH AN INVISIBLE ILLNESS PART III

I've worn a convincing mask for 11 years. That number just makes my heart flutter. It's such an unbelievable number. It's been so long, it feels like forever. Other times, I'm still hoping for a complete remission. Look up the stats on that. Sadly, after 11 years, with no improvement, and, in fact, a marked decline in the past 2 years. I've not only got this condition, trying to chip away at my body from the inside, no way to stop it, and I've also got basic math on my case as well. I'm AGING as well. I suspect that the change in my condition, is somehow connected to menopausal changes as well, even though as yet, I've felt NO indication of "the change" .... I'm only 51, it may be a few years more, but my "gut" tells me there's a natural reason for the ongoing flares over the past 2 years. One thing that happened was my acceptance that I'm not going to wake up one day, and feel like the GOAT me, the one "before" ... It's been rough coming to terms with all of this. I'm not sure whether I mentioned this already, but my youngest (of 4 kids) is 16+ and mentioned this summer that she "really doesn't remember me being healthy". The most heartbreaking part is that I was not struck with M.E. until March 2007, which would mean she was 5 when I got sick. I had been suffering with a lot of back trouble since her pregnancy, my back was always a problem (since puberty) but for some reason, I never felt it "recover" from my last pregnancy. 
The guilt is heavy. I always knew I was going to have a family. Being a mom was all I ever wanted, and here I was, suddenly unable to parent effectively. I couldn't even care for myself, how could I care for my kids? (At diagnosis, my kids were 17, 15, 9, and 5) They did not, in fact, ask to be here, and they ended up a bit shortchanged, in my opinion. 
To top it off, I ended up with an illness that's really hard to "see"... If I had cancer, and lost my hair, people would know without asking that I was fighting something. With M.E. you'll only see me out and about when I'm well enough to do so, making it unlikely anyone would recognize that I'm actually ill. I get many crooked looks when I use my handicap parking pass, and it's exhausting imagining explaining to everyone that even w/o a wheelchair, I do have a medical handicap. I guess it's ironic that I'm "fortunate" to not deal with that often, since I'm not often well enough to GO out.  Lucky me. 
Lucky me.... yeah. I hear that. You're so lucky, Bex, you "get" to lay around....
What the actual f@ck! Let me clear something up, people. There's not a person alive that would "choose" this life. I'm caught in limbo, knowing I'm stuck there. At 40, my life did an about face, and I've been trapped there ever since. My typical sensation is that of the onset of the flu. Every.Goddamn.Day. This illness has chipped away and eroded every relationship I've had. It's extremely isolating. My older two kids were almost grown, ready to embark on their own life journeys. I can't stand the thought that might be interrupted, and it would be my fault. I'm not concerned that my M.E. is terminal, but I already know it's shortened my initial life span. My body fights itself 24/7. That's got to weaken a few things. But being a burden for the rest of my days is not a notion I am able to think about right now. I've been through all of the stages of loss and acceptance. I'm a bit embarrassed that it took 11 years to get anything close to acceptance, but I was just certain if I kept being optimistic, eventually I'd just recover. Yeah, that's a big piece of Pollyanna Pie. I know. Now, I'm ready to just focus on maybe bringing information or guidance, maybe even just be a support for someone who is newly diagnosed with M.E. 
I may be different, but I'm still alive! 

Thursday, August 30, 2018

TRANSPARENCY WITH AN INVISIBLE ILLNESS part II

I'm documenting from memory (using journal notes, appt dates, etc) from the beginning of this journey with ME/CFS. This entry is the continuation of the story I began with my last entry. Bear with me, actually COMPLETING each entry requires many attempts to continue with the draft copy saved here. What may amount to only a paragraph when posted, often has taken days to complete, sometimes writing 2 or 3 sentences is all I am able to manage at a sitting, so if you notice I'm AWOL in between, that's why. Chronic Illness controls every aspect of my life. It's very frustrating, but I'm determined to get it all down in black and white. I admit, one reason is due to the fact that I feel I'm losing more memory than I am comfortable talking about with anyone. I just don't want to forget the details. Some day, I imagine they'll make huge advances with these conditions. Maybe my recollection as to how it began will be helpful for treatment, even if it's not for me.
I think I got as far as mentioning I was in school at the time. That was the next thing to "give". After suffering for about a month, sleeping around the clock unless I stumbled to the bathroom or choked down some soup, I was mostly sedated. I use that term deliberately. I recall feeling that the sleep was that of a tranquilized animal. I recall the feeling of losing/regaining consciousness rather than falling asleep as one normally does. I was still battling the on/off of low grade fever readings, the numbers fluctuating every few hours, when I woke at all, I checked. I still had the chills and sweats, although my home temp was consistent, and my "fever" temp never went over 101 again. It bounced between 99 and 101, never seeming to drop and remain normal. This continues 11 years later. 
Eventually I had to admit that although I didn't know what I was fighting, if I was unable to stay awake more than 2 hours each day, I was NOT going to pass any of my classes, and each day that went by put me further behind in my assignments, so I requested a temporary medical leave. It took another 3 weeks before I decided I needed to drop my classes altogether. I had gone from someone who thrived best with 5 or 6 hours of sleep every night to someone who couldn't seem to WAKE UP. When once I woke to cricket chirps, now an alarm in my ear, along with a teenager shaking me to accompany the shrieking of said alarm, I was simply unable to "hear' through my flu haze. I was scared shitless, and I couldn't even stay awake long enough to voice it. 
I recall this was during the period of physical therapy for my left shoulder. This was the only time I left the house. I was so sick, but also afraid to miss the therapy, because I feared I would then never regain the full use of my arm, so I set an alarm for about 5 minutes before I would need to leave for the appts, then I got up, peed, brushed my teeth, and off I went, in pajamas, and with a blanket. If I was made to wait any length of time, I would doze upon sitting in the waiting area. I struggled through the (1/2 hour?) appt, cried on the way home, due to the fatigue and the ongoing body aches; then went back to the couch once home, and slept on. Rinse and repeat. 
I became a professional patient. It was a LOT of bloodwork. There were tests run for Lyme, cancer markers, you name it. They tested. And ruled out. One thing after another was negated. I saw ONE especially memorable moment, when in the office of a neurologist. He had ZERO bedside manner. It was also VERY clear he thought I was a nut case. He listened to me ramble, then wondered aloud whether it could be a brain tumor. Off the cuff. This to a woman who survived a TBI at age 23, a leaking brain aneurysm, a 5 percent chance of recovery. A 23 year old newlywed, mommy to a 6 month old boy. I was so anxious when I left that office, I was torn between my fear of the unknown to the indignation I felt over his behavior, and dismissal of my concerns for my health. It was clear he did not believe I was being accurate with my symptoms. I was dismissed.
Thankfully, my primary doctor had known me since 1998, when I first began to see her, pregnant with my son. After a pre-term delivery, my lifelong trouble with back pain reared up, and persisted. I had back pain, then leg pain, then numbness and tingling, and eventually, a limp. Chiropractic care, medical care, physical therapy, and medication couldn't stop the train, and this led to a 2 level lumbar fusion in 2006. So my doctor was VERY familiar with all of my issues, and was aware how much I "listened" to my body, and she BELIEVED me when I described what was happening. Because of this, I was referred to the specialists who could get me a diagnosis. Without her, I might still be looking for that initial diagnosis. 
When a rheumatologist diagnosed me, I went home and cried and cried and cried. She had given me an answer, but in the same breath, expressed the words I couldn't accept. There was not only no CURE, there was also no real treatment plan. All I could think on the way home was, I'm Fucked. 

Tuesday, August 21, 2018

TRANSPARENCY WITH AN INVISIBLE ILLNESS

11 years. Hiding my illness as much as possible. (Sometimes the face cannot mask my pain). All that struggle. Not just the struggle to get thru each day with an illness for which there is NO cure, NO real treatment... but the struggle to cover the real me. I thought I was protecting my family and friends from the full impact of this wretched fucking life, but it didn't work. In fact, I suspect all the "pushing through the day" bullshit I was trying to do, was causing more severe "flares" than I'd likely have had, but with this particular illness, push back is inevitable. And the illness ALWAYS wins. 
The onset of ME was sudden. I had a shoulder stabilization on my left arm in March 2007. Outpatient procedure, I arrived at Fairview Southdale in the early morning, went home with a completely numb arm, bandaged and pain control on board. 
Mid-March, I got an upper respiratory illness. I assumed, as one does, that it was viral, so I treated symptoms, and prepared to wait it out. After a week or so, my fever broke, and I felt that by morning, I'd begin feeling better. 
My fever was gone a few days, and returned with a vengeance. I still felt as though I had been hit by a truck, coughing around the clock, sleeping, chills and sweat alternating. Time to reassess. It was decided that a round of antibiotics was warranted. I completed them, the cough decreased as expected. 
My life had changed in an instant, I was yet unaware. 
Even after taking all of the meds, I could NOT shake the "flu" feeling. I was struggling to regulate my body temp, I continued to watch my temp several times daily, watching for a fever relapse to explain the awful way I felt. I kept running a low grade temp, on and off several times daily, but it just wouldn't stay away. I had chills and hot flashes continuously. My body was betraying me. 
At this time, I was working on a power point presentation for a class I was taking. I somehow got picked to be the leader of our group, which immediately SHOVED me out of my comfort zone. I prefer to be invisible in this situation. Little did I know just how ironic that would become. I now wear the badge of one diagnosed with what is known as an "invisible illness" because the illness is severe, but a stranger would never know of your suffering by looking at you. Stranger my ASS, even close friends and family can be oblivious, as I have proven to myself over the past 11 years...
(to be continued...)
I have struggled over several weeks to get this far in the story. I'm doing this because I finally have decided that I'm just going to be transparent about my journey. I had a lightbulb moment, recognizing that if I'm going to spend the rest of my life with this affliction, I cannot hide any more. I've not sought support because I feel like a burden. I have to change my mindset, because it's reducing my quality of life.