I wrote almost all of this post back on January 29, 2018. It needed some editing and and good conclusion, and somehow I never got around to doing that. So here is what I wrote in January; everything since then will be tacked on to the end. Oh, and…Hello again!!!
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Some of my more observant regular readers (wait…do I still have any of those?) will have noticed that I haven’t exactly been around much lately. “Lately” meaning “for the last two years”, of course.
There have been some amazingly good reasons why I’ve not written, but they’re almost all extremely serious and even traumatic. Therefore, the longer I went without writing about them, the more odd it felt to try and go back in time to say “oh, by the way, this wretched, awful thing happened a year ago”.
Sadly, our lives appear to have taken up residence in the valley the Bible speaks of, and with no clue as to when we might begin climbing towards the mountain tops (or even just out of the hole) I feel it necessary to just dive right back in to writing. There will never be a good time to ease back in to this blog of mine, and I am pretty sure writing is a form of sanity saving for me. I kind of need to do this.
So I’m sorry if this is a bit of a downer post, but, if I can live it I’m sure you can survive reading it!
Picking the story up it seems easier to just jump right in chronologically, rather than trying to rank each event in order of trauma. Here goes:
When we last left our heroine, she had been injured at work and was incapable of typing. Therapy hadn’t helped and had increased her pain. She had been ‘done in’ by papier mache, and was getting nothing done around her house. She was in the middle of a MCAD reaction that had lasted for months, stumping every doctor she visited. Little did she know, her troubles were only beginning…
Sorry. Couldn’t resist trying to inject some humor into all of this.
Anyway, yes, my hand and wrist were killing me, and I was covered in a rash. I eventually completely stumped 5 doctors, 2 pathologists, and 7 nurses with that rash. No one could figure out what it was! I had 3 biopsies done and the pathologists couldn’t figure out what was causing the rash.
Duh. Mast Cell Activation Disorder was causing the rash, folks.
Meanwhile, I’d had my hand checked out. The doctors finally learned I had extreme carpal tunnel in my wrist, requiring surgery. Great.
Oh, and almost on my way out the door from the appointment where I scheduled that surgery my orthopedist nonchalantly threw out at me, “You know you have this other thing going on, right?”
No. No, as a matter of fact, I didn’t.
Turns out I had carpal tunnel that was a repetitive strain injury from work and also was showing incredibly early signs of a rare disease (OF COURSE) in my right wrist called Kienbock’s Disesase. That means a bone in my right wrist is dying and no one knows why.
Yeah. That’s fun.
Even more fun was my massive MCAD reaction in January 2017. See, I’d spoken to someone who had a clue about hormones and she had said it sounded like my hormones were a bit of a mess and I should get them tested.
So, I did.
And, they were.
I had crazy amounts of testosterone, estrogen, and cortisone, and almost zero progesterone.
Mama wasn’t a happy person, y’all.
I was so unhappy, in fact, that when talking with the hormone doctor I said “please, for the love of God, fix me!” and she suggested some OTC natural hormone fixers and I said “thank you” and bought them and opened the hatch and just swallowed the suckers…without even sparing a moments consideration to the sheer folly of someone with my medical history of food and chemical reactions not carefully investigating and trialing new ingredients.
Yep. Two days after I began taking the hormones I was in the ER with such excruciating GI pain I could hardly move or breathe. The ER doctors were so scared of messing with someone with MCAD that they basically gave me some acetaminophen, some fluids, some very expressively nice commiseration faces, and sent me home…still in pain, still reacting, still feeling like I was about to die.
I honestly don’t remember a lot from last January. The pain was constant and overwhelming. At one point I went to my GP for help. He actually sent a nurse in to tell me that I am too complicated a patient and he will no longer treat me. Isn’t that special?
I also decided to try some ibuprofen to perhaps help with the inflammation I was experiencing. Within hours of taking two ibuprofen I was back in the ER with worsened symptoms. Clearly, ibuprofen is a trigger for me, too.
That ER visit actually had me almost attack an ER doctor, by the way. It was three weeks after the pain had started, and the man actually had the audacity to accusingly say to me “Well, I think it’s clear what’s going on. Look at you! Your breathing is shallow and panicky. You’re incredibly anxious. What’s been going on in your life that has you this stressed?”
(Pardon me while I let my language lapse here) “What’s going on to make me so anxious and stressed? How about the fact that I’m **** reacting and in terrible **** pain and no one will **** help me and I’ve been feeling like I’m going to **** die for the last three weeks with all of you useless, incompetent, incredibly STUPID **** DOCTORS telling me to go away because you’re either to **** nutless and scared to help me, too **** stupid to help me, or too downright audaciously cruel and evil to look beyond your own ego to find answers, you disgusting son of a *****!!”
And that man gave me a lorazepam, which is a benzodiazepam (a highly addictive medication that helps with anxiety and extreme stress and is also often given to MCAD patients as a rescue medication) and that one single dose of lorazepam stopped my MCAD reaction in its tracks…and made me completely forget over a week of my life.
Darrel has receipts proving we took the car in for repairs that week and had a rental car for about 3.5 days. To this day I am convinced he is lying because I have zero memory of that. None. It didn’t happen. I remember NOTHING from that week.
It’s terrifying.
Oh, and while all this was going on between October and January, we sold my old house in Houston that we had been renting out at a nice little profit every month so we could build a barn for the goats and rabbits we had started raising. We made a sweet chunk of change off the sale…right before I was kicked out of work for 9 months.
Then, from October onward, we had $1,500 in a roof repair, $2,400 in a heating unit repair, $2,000 in car repair for my car and another $750 for Darrel’s car, and a couple other large bills that hit that I can’t remember right now. (Are you reading this and feeling your lip curl up, your eyebrows raise, and a desire to scream “Seriously? Are you kidding me?” right now? Good. Because that’s about how we felt about it all, too.)
In all we were left with $8,500 to build the barn. Not enough to hire someone to do it, but enough to get the bare bones of the structure up if we did the work ourselves.
And then I did our taxes. We owed the IRS – – – wait for it – – – I’m not even kidding here – – – $9,000.
Seriously. We wondered where the cameras were. Was this for real?? Yes. Yes, it was.
Oh! And back around the time my right hand became useless, Darrel’s old Army injury came roaring back with a vengeance. This time I insisted he skip the VA and go see a doctor that wasn’t a part of socialized medicine, and for the first time in 20 years, Darrel found an answer that wasn’t “Stop faking it, you slacker…this is all in your head because you’re lazy and don’t want to work!”
No kidding. That’s what the Army and VA doctors had told my husband for over 20 years.
Turns out he has major nerve damage in his right knee. Yay! We have an answer!
Boo, though, because there isn’t much that can be done. Darrel has been seeing a pain management specialist since then, taking extreme amounts of pain meds just to get through the day. She’s diligent, though, and keeps trying to find the best things to help him with pain while not hindering quality of life. It’s the best he’s had so far, it just sucks to live through.
Meanwhile, my parents had been nagging me about getting Jed’s eyes checked. They said he often complained about his right eye. Since he NEVER said one word to me about his right eye, I assumed he was “milking” Grandma and PopPop for sympathy. To shut them up, I finally took him to the eye doctor, where we learned he has amblyopia in his right eye.
Well, make me look foolish.
It’s “lazy eye”, but not the kind where the eye physically aims in any direction. It’s lazy eye where HIS EYE DOESN’T WORK. AT ALL.
So we spent a few months putting an eye patch on his left eye to force his right eye to work, and I’m pleased to report that his right eye now is correctable to 20/20 with glasses (which he will need for the rest of his life).
Even telling him he was like a pirate didn’t make him enjoy the patching; at least he didn’t give us too much trouble about it! (And why did he only ever tell my Mom and Dad about this? I felt like dirt when the doctor gave us the diagnosis! Ugh!)
So. We’ve now dealt with needing surgery for carpal tunnel for me, needing a surgery for this Kienbock’s, Darrel’s knee being almost useless and causing him extreme pain, using up ALL the profits from the sale of my house for random crap that happened while I was out of work for (as it turned out) 9 months, watching my house turn into a junkyard because I couldn’t DO anything in that time, finding out my hormones are literally crazy-making, reacting to the hormones I take to fix that, being tossed in the ER twice in January and forgetting half the month thanks to medication, and turning Jed into a pirate to force his eye to stop being so lazy! Oh, and no barn. I had rabbits on my back porch and goats in my backyard.
On the plus side, in February I found an allergist who gave me an immunosuppressant ointment and that ended the 9 month long MCAD rash from hell. Thank you, God! He also prescribed some Mast Cell stabilizing medicines for me to try, and, desperate to not have another reaction like January or rash like July-February, I started taking them all. Ah…
Then, at the end of February, I had my first surgery for carpal tunnel. Surgery as a MCAD person is not so easy, y’all. I was scared. Turned out, it was okay. Apparently propofol is an okay drug to use on me for surgery. Yay!
A few weeks after that, I had surgery for the Kienbock’s. They cut some bone out of my arm and sent me on my way.
Two months after that, I was back to work! In the end, I had worn a wrist immobilizer on my dominant hand for 9 months.
Why yes, my house is an absolute, one-step-away-from-Hoarders disastrous mess, thank you very much. Mama not being able to use her dominant hand at all for almost a year means my family and I now live like pigs. Joy.
On the plus side, since my house was such a disaster I had no choice but to ‘outsource’ the kiddos birthday party last summer. We had a rock climbing party at a local outdoorsy shop with a rock wall and it was a rather large success. All the kids liked it, and a couple of the moms actually asked for my cake recipe for the cake I’d made the boys!
It was expensive, but knowing I didn’t have to frantically rush about trying to clean the house was well worth it.
But guess what happened from February until July?
I GAINED BACK EVERY POUND OF THE WEIGHT I LOST ON THE ELIMINATION DIET FOR ZAC.
EVERY. HORRIBLE. POUND.
I begged the allergist, the one who said he had experience with Mast Cell patients, to help me understand. “If I lost all the weight because my mast cells were stabilized from nursing Zac and I stopped eating trigger foods, then if I’m taking medication that should stabilize my mast cells and I’m not eating trigger foods, shouldn’t my weight stay the same, or even drop? Why am I gaining weight like this when nothing has changed in my diet??”
His answer? “Oh, I don’t really know much about that. Sorry.”
Great.
So after years of finally feeling like I was living in the body that made me feel like ME, I turned 40 last summer the same obese woman I was my whole adult life.
And I hate it.
Then, in August, I learned that one of the mast cell stabilizing drugs he’d prescribed is NOTORIOUS for causing extreme weight gain in those who take it. Like 50-60 pounds in a few months weight gain.
Aside from the weight gain, I felt sluggish, low-energy, brain-foggy, had poor memory and just generally felt low grade icky the whole time I was on mast cell meds. Finding out my size 18 pants were the result of those meds? Yeah…
I stopped taking all my mast cell stabilizing meds. Clearly, none of my doctors has a clue. Sadly, that medicine cessation hasn’t resulted in a single pound being lost.
This July I fought for and received another diagnosis for Jed. He has dysgraphia. So we increased OT for him to help train his brain to write letters correctly. On the other hand, both boys tested out of some therapy, so we only have to go to town two days a week for their therapies now. Hallelujah!
All this summer I was getting fatter by the minute, fighting to help Jed, and trying to get my house in order while working as much as I could. I didn’t accomplish much on the house front, so it’s still a mess. However, I started to feel motivated towards writing in the blog again. I actually enrolled in the Amazon affiliate program; something I had tried to do years earlier but was prohibited from doing due to tax laws in Arkansas. Those laws had changed last year, so I was now able to enroll. I did, thinking I would get all those links added to my already posted posts, and then, when I started writing currently, the affiliate commissions would start to trickle in! I was very excited!
In August, school started again (we homeschool but are part of Classical Conversations, so our community day every week started in August) and we were also trialing chlorine on the boys via swim lessons!
I believe I mentioned my distress over not teaching my boys to swim prior to this, considering I had been on the swim team in high school. We just couldn’t risk another reaction to a chemical when we were so desperate to get food into Zac’s diet. Finally, though, at 5 years old, we could risk it. He had enough foods; now we needed to make sure he would not drown! The boys loved swimming and only had mild skin reactions to the chlorine, so we were thrilled they wouldn’t drown and we could actually take them swimming from now on.
Sadly, in September my mom totally dropped the ball on homeschool work for the boys during the first week of the month while I was working. We ended up being a week behind barely two weeks into the school year, and I was ticked off! I had to work super hard and drive the boys nuts trying to get back on track, and in mid-September, in a fit of frustration at Mom, I bid to work nothing but weekends in October so she wouldn’t put us behind on schoolwork again.
I was all, “Fine. I guess I won’t ever spend a weekend at home with my husband and children ever again, just because Mom can’t keep up with my lesson plans. Whatever.”
In early October, I worked the first ten days of the month and then was going to be home for the rest of the month except for a day or two on each weekend. I arrived home early on the afternoon of the 11th, and that night, around 9:00pm, Mom called me.
She was in the hospital and just wanted me to know.
You know what? Forget it. I’m not going to talk about this part of my story in this post. This deserves its own BOOK, let alone its own post.
The short of it is that my wonderful Mother ended up being diagnosed with cancer. She passed away on November 3rd.
I can still barely function from the loss. In case I can’t bring myself to write more about this later, I want to state for the record that my heart is broken and I don’t know what to do with myself right now. I’m hanging on by a thread and just trying to breathe through each day.
And I feel incredibly guilty for being mad at Mom in September for falling behind on schoolwork. I didn’t know she had cancer, then, but still. I feel guilty for it.
I miss my Mom every single day and am still in shock that she is gone. I suspect I have some PTSD from watching her die. Her death was simultaneously beautifully moving and also traumatic.
But I can’t get into that any more than this right now or I’ll curl into a ball and cry. So to finish bringing the story up to current time (because, yes, more crap happened since November 3rd, can you believe?) we dealt with all the stuff that happens after someone you love enormously dies, and Darrel and the boys and I basically moved in with my Daddy through November.
Every year my Nana, Mom and I would make Thanksgiving dinner. This year, I had to make it all by myself.
God, I’m going to cry again.
So the last weekend of November I had two days worth of work to do. TWO. DAYS. And then I had 3 days of work in December and that was all I had to do until 2018 began.
Seriously. 5 days worth of work.
Now, keep in mind, we still don’t have a barn, our bills are still killing us, and I had hardly worked in October because of the hospital and hadn’t worked at all in November because of Mom dying.
I felt torn. I knew I wasn’t really ready to go back to work but our health insurance is through me; I needed to work enough to pay the premiums for that. And this was 2 little days of me working in the galley. It doesn’t get much easier than this for Flight Attendants.
So I went to work. I made it through the first day only because we were delayed 4 hours and I was able to cry about Mom to my crew members before we even boarded the plane. We finished day 1 and I went to the crew room for minimum layover sleep. I woke up the next morning, got my spit bath in the sink and got dressed for work, made myself some breakfast, did some quick shopping at the employee craft show they do every year before Christmas, and started heading for the plane.
I was carrying all the cards people had sent for Mom’s funeral with me in a Chipotle bag. My thinking was that I could transfer everyone’s name and address into the little book the funeral home gave us so that later on I could just carry that so I could write thank you cards to all who stepped up to offer condolences.
Darrel called me on the phone as I walked through the airport and informed me that Jed had woken up before Daddy that morning, gotten Mom’s phone and called Darrel. “Daddy,” he’d said, “When can we go home? I don’t want to live at PopPop’s house any more.”
And I crumbled.
See, I’d already failed my aunt in part of our family drama; I’d hardly seen my husband in a month, so I felt I was failing my husband; I was trying to take care of Daddy because Mom had made me promise to take care of him but I felt like I was failing in that. which means I was failing Daddy AND Mom; and here I am failing my children, too, which really means I’m failing Mom if I’m failing my husband and children; plus, I’ve hardly been working, so I’m failing work, too.
So the floodgates are about to open, and the Chipotle bag with all the sympathy cards for Mom ripped open and spilled all over the floor of the airport.
Some random, kind passenger stopped and helped me gather them all up, and no sooner had she walked off than two building/facilities maintenance guys standing nearby swooped in saying “We can fix that for ya!” and grabbed the Chipotle bag and started duct-taping the sides.
The one guy saw one of my Mom’s funeral memorial cards and patted me on the back. “I see what you’ve got going on here. I know what that’s like. It’s okay. You’re gonna be okay.”
And that kindness being heaped on top of my feelings of abject misery and total failure turned me into a human crying machine. I started crying and didn’t stop for over three hours.
My airline had to come and remove me from the flight and replace me with another Flight Attendant. To their credit, the airline was incredibly kind and wonderful about it all. They flew me home that afternoon and said not to come back to work until January, and they bought my trip in December so I’d still get some pay. Unbelievably kind.
Plus, they let me cry on their shoulders for three hours until I could stop crying. That was pretty nice of them, too.
They also suggested I talk to the EAP (Employee Assistance Program). I did, and the lovely lady there sent me a list of counselors in my area that work within their benefit program. Turns out, mental health care isn’t very highly covered under most insurance programs, but if you melt down at work, THEIR program is very generous! I now see a counselor for extremely reasonable out of pocket expenses.
You’d think that would be enough, right? But wait…there’s more! A couple weeks after my epic meltdown at work, I took a step backwards in the hallway one night and my foot landed on a Nerf gun. In the fantastic fall that followed, my leg did things it isn’t supposed to do and I ended up face down on the ground.
That’s when I learned that I have cell phone signal in the hallway…but not when I’m on the floor.
Darrel wasn’t home. He was rescuing my Daddy from a flat tire out in the country.
It took me 5 minutes before I could bear simply rolling over and sitting up. Another 15 minutes before I could try standing. Then I hopped to the dining room and had Jed bring me an ice pack to wrap around my throbbing knee.
I called Darrel then to see if he would stop and bring some crutches home with him, and to please hurry while he was at it.
Long story short, after several visits to the doctor he finally said I could do an MRI or just wait to see if it got better. I said so much of my life is outside of my control and uncertain, let’s just do the MRI to give me an answer. So we performed the MRI and I flew to work that afternoon! I worked two days, came home, and two days later got the news: that Nerf gun fall had torn my meniscus AND torn my ACL.
You got it. Another surgery.
That happened a week and a half ago and I’m still recovering. Still wearing a leg brace and using crutches, though hopefully not for much longer.
Saturday the boys and Darrel and I went to a birthday party for Jed’s best friend at school. I didn’t do much; just hobbled around and sat with an ice bag on my knee for most of the time, but my leg has been killing me ever since.
And both boys turned up with double ear infections Sunday morning, so we missed church again and I, with my gimp knee, and Darrel with his “maybe the flu but maybe just feeling crappy” are having to deal with two little boys with fevers, pain, crying and screaming, and medicine for all of us on crazy hours.
Fun. Fun. Fun.
And now my story is caught up. I feel like I’m in a movie of the week, or a Jerry Springer episode, or some other “Are you kidding me?” kind of situation, but, no, this is really my life.
Oh, and sometime in the last few weeks I got notice from Amazon that my affiliate account was cancelled due to lack of making a single sale in the 6 months since I’d signed up. Oh, well. At least I can sign up again.
I really do want to keep writing, though. This has been an incredibly hard two years. Not writing was legitimate for a while. But I have so much I want to share! There are blog posts and books and pamphlets and such in me just dying to come out, and I have to get back to it.
Besides, I recently got a comment on the blog. No, I have NOT been approving blog comments for almost two years, and I have a gazillion waiting for my attention. Most of them I have not read yet. But for some reason, the one that popped up this week I opened and read, and it blew me away.
A lovely woman named Esther just spent the last few weeks of her time reading my entire blog from beginning to end, and she sent me a comment to tell me that no matter what I’m going through for why I stopped writing, this blog is still a blessing to others. It still helps other families going through these issues, and gives them hope, and helps them navigate the craziness of our weird medical stuff. She thanked me for writing, and said she can’t wait to read what I write next.
That comment was like a breath of the Holy Spirit blowing over me, telling me that I’m still viable.
I didn’t title this post “The Incredible Vanishing Woman” just because I haven’t written on the internet in forever. It’s also because, especially lately, I feel as though *I* am vanishing. Like my spirit and soul are shrinking into nothingness.
How many hits do I have to endure taking for how long? I’ve finally felt as though I’m not strong enough to keep going. Lately, I’ve been crumbling in to myself.
Esther’s comment felt like a warm breeze blowing over me saying “It’s okay. I know the plans I have for you, plans for you to prosper; and even though it doesn’t make sense and the blows seem to keep coming, it’s part of my plan. Hold on, daughter, hold on.”
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That was where I stopped in January. Pretty warm and fuzzy, right? I should have just posted it.
In any event, in February my physical therapy was going well until about 2 weeks into it. Then I developed Patella Femoral syndrome, which effectively derailed my PT for almost a month. So my knee is getting better, but I’m not as far along as I should be.
I’m back at work, either way.
Also in February, I was telling my therapist about the GP doctor situation and he did an amazing thing. He called some doctors he knows and found me an integrative medicine doctor that would see me!
I visited her and we did a bunch of tests on my hormones, blood sugar, thyroid, etc. The results came back last week and I learned I have Hashimoto’s Disease.
BECAUSE MY LIFE SURELY NEEDS MORE ILLNESS, RIGHT??
We also spent the last two months suffering the weirdest stomach bug I’ve ever heard of with the boys. They’d throw up like crazy for a day, then be fine for 2-3 days, then throw up again. Every time we thought they were better they’d vomit and prove us wrong.
The fact that we were trying to be brave and trial corn when all this started is not comforting. Clearly, the corn trial ceased.
Oh, and why were we crazy enough to trial corn? Because we had finally done an oats trial on Zac, and he had no reactions!
Oats, in case you’ve forgotten, were Zac’s last known FPIES trigger. At 5.5 years old, Zac finally outgrew his FPIES!!
Honestly, I had to force myself to add the exclamation points to the end of that sentence. It was a remarkably anti-climactic reaction in our house to the discovery that FPIES is gone.
See, when I compare FPIES to ALL the other things we’ve uncovered in the last few years that I deal with (that are genetic, so therefore the boys will likely deal with), FPIES just isn’t that hard or scary.
Fellow FPIES families, think for a moment about that statement.
FPIES is one of the most overwhelming, terrifying things I’ve ever dealt with in my life. And now, when my son outgrows it, I’m not jumping for joy and thrilled. I’m more “Meh. Good. One less thing for us to stress and worry over.”
That just seems like a cruel joke.
Truth is, I may just be depressed enough that I can’t jump for joy over the news. And that’s a pretty cruel joke, in and of itself.
I’ll write more about joy later. In the meantime, I’ve now caught this blog up to the current time and can confidently write whenever I darn well feel like it without feeling like there are big, gaping holes in my story.
Thanks for reading my little book, here. Thanks for being a part of our story.
Now let me see if I have enough energy to go moderate two years worth of comments!
Oh, and if you haven’t done so, please sign up for email updates when I post! After this, I hope to share some new recipes and medical stories and you won’t want to miss that!
