Diagnosed: Trapped and Struggling

I think it may be time to share about what’s going on in my life right now and for the last 8+ months. A year ago, I was taking a health and wellness class toward my Public Health degree that required participation in a regimented exercise routine and healthy eating for the semester. Good things, right? Right. Maybe. I was weighed every 2 weeks at the blood bank while I was there to donate platelet/plasma and noticed that at every appointment, my weight had gone up by 2 pounds. By the end of the 14-week semester, I had 99.77% final grade and a mysterious extra 14 pounds. About a week after the semester ended, I woke up one morning with 30 extra pounds of fluid and a very distended and firm abdomen. For 2-3 weeks I thought I might be pregnant. Not being a skinny woman to begin with, it wouldn’t be all that unusual for a pregnancy to be undetected until it started to really show – gastrointestinal distress isn’t unusual in my life so nothing that happens in that department would have alerted me to anything new.

I had been off “the pill” for a year and had recently gotten off all my anxiety medication to minimize any unnecessary risk to a pregnancy. Per doctor’s recommendation, we were waiting things out until we knew more about Covid-19 before trying to conceive; our appointment to begin discussing family planning occurred in March 2020 as the pandemic was just really getting started. This left me disappointed but OK with the decision to wait a little longer. The notion that I might be pregnant months later brought on a whole slew of new emotions I hadn’t felt before. I thought maybe God was like, “Girl, you’re getting old. Let’s just do this, I got you.”  Nope. Not even close. A bazillion home tests and 2 tests at the doctor later… not pregnant.

My heart sunk.

The weeks and months came and went. The fluid retention continued to increase and spread to my entire body, head-to-toe, as did the pain and gradual loss of mobility. I noticed my skin changing, especially on my face – it began to feel like cheap fake leather. I’ve always been meticulous about taking care of my face, and then I lost control over my skin changes. The skin on my scalp, arms, hands, and legs joined the fun as well – stiffening, thickening, breaking out in painful rashes, sloughing skin randomly, growing mysterious bumps...  

So many doctors and specialists, so many tests… so many dead-ends. By the end of December, the fluid retention was up to 53 pounds with zero success to reduce it. The cardiologist diagnosed me with Orthostatic Hypotension (my blood pressure drops quickly when just simply standing still, as well as with any movement) which helped explain the dizzy spells and lightheadedness that I had also been experiencing. He handed me a pamphlet about Syncope and that was that. Ugh.

The fluid retention reached an all-time high of 75 pounds with the new year. I was having trouble sleeping in our bed – so much pain, trouble breathing – and nothing helped (e.g., extra pillows, elevation using a wedge, etc.). The end of January brought 3 big things:

1) A new (used, but new to us) couch with built-in recliners so I could keep my legs elevated during the day with greater ease while working from home. The recliner couch immediately became my new bed as well.

2) A diagnosis of Systemic Sclerosis/Scleroderma, a rare autoimmune disease that causes an overproduction of collagen in the body – it is progressive, incurable, and presents in a variety of unique ways for each person afflicted with it. It is commonly accompanied by one or more additional autoimmune diseases. Some people die a few years after diagnosis. Some people don’t. We don’t know enough information to have a prognosis in that department yet.

3) On Saturday, January 30^th, I started weekly doses of what I call “the poison.” My rheumatologist put me on low-dose chemotherapy (15 mg of Methotrexate) to suppress my immune system and hopefully get my body to stop attacking itself.

With the 3 big things that the end of January brought, I lost 6 pounds of the fluid build-up. I swear, the relief as slight as it was, was felt 100% from my calves. I felt a glimmer of hope – it was either a perk of the extra diligent elevation, or the chemo. A few weeks later, the fluid retention jetted back up past the previous high and settled at a new high of 80 pounds – accumulating in my thighs and hips as my first occurrence of pitting edema (as opposed to non-pitting edema). Suuuper helpful for ambulating – NOT! With every step I take to get to the bathroom and back, it feels like someone is trying to violently tear my legs out of my hip sockets.

I now use a bi-pap machine to help me breathe at night. Apparently, I stopped breathing 26 times an hour in my sleep and had low oxygen levels – that would explain my almost daily episodes of passing out while working and waking up 30 minutes to 4 hours later. On a good note, while my lung capacity is limited per the Pulmonology study that was done, the oxygen I do get in makes it to all the right places. Now I wake up several times a night to drink water for dry mouth issues, but I’m no longer falling asleep during the weekdays.  Speaking of dry mouth, that’s been a fun addition to the circus for the last few months, not just during the night due to the bi-pap machine. My eyes have also begun having trouble producing tears, causing pain, irritation, blurred, and double vision. I use gel eyedrops during the day, eye ointment (it is THICK) at night, and the ophthalmologist plugged the holes in my bottom lids with teeny tiny silicone plugs that stab me in the eyes if I look left or right without moving my head. Ouch! There’s a whole line of products to help with dry mouth and to increase saliva production – special toothpaste, mouthwash, gel, spray, lozenges… I have them all! Helpful? Meh. I’m not convinced, but they are a step above plain water. While I have not been diagnosed with Sjogren’s Syndrome yet, I suspect that may be what’s going on. A diagnosis is reliant on a lip biopsy. Owie. I’m good putting that off for a bit.

April 3^rd was the 10^th week of taking the poison… the 10^th week of hating Fridays because they just mean Saturday is coming with more poison. Hearing or reading “TGIF” or “Thank God It’s Friday” is followed by feelings of resentment as of late. I don’t mean to be so bitter, but this stuff really kicks my trash and leaves me exhausted, in pain, and feeling puny for days. I pray for the day I can look forward to weekends again. The week after the 10^th dose was not it, that’s for sure.

I had an appointment on April 6^th with my rheumatologist. She informed me that she presented my case to hundreds of rheumatologists around the world since the crazy excessive fluid retention and rapid weight gain is not something typically seen in Systemic Sclerosis/Scleroderma. She heard back from 2 (yeah, TWO) of the doctors – both who had worked with a case just like mine. JUST LIKE MINE! Fabulous! I’m a rare case with a rare disease… but not entirely unheard of. What provided help with their patients? More Methotrexate (the poison). Joy.  So on April 10^th, I started a new higher dose of 25 mg per week (10 mg more than my old dose). It’s too much to absorb at once, so I have to take half with lunch and half with dinner. Let me tell you, I was not prepared for the aftermath of this new dose. HOLY FRICKIN’ CRAP. All the ill effects of the past dosage (pain, malaise, drowsiness, general sick feeling, heaviness in limbs, etc.) multiplied by 5, plus an invasion of gravel trucks in my eyes, face itching and swelling, pounding headache, and the inability to tolerate light and sound. I spent the second half of last weekend with lights off, curtains closed, sounds off, and a hat over my eyes. It was horrible. Monday was really rough having to work on a computer all day (it was as dim as I could get it and zoomed in so I could at least make sense of things). I was spared from further intense eye agony by the fact that I have a pair of prescription sunglasses – they have been a Godsend this week.  I live in them now – don’t judge me.  I also live in pajamas day and night, and wear them to all doctor’s appointments, breaking my personal “no pajamas in public” rule. Dang it. And don't be fooled, they aren't cute pajamas. Nope.

I’ve had a plethora of “new lows” along the way. The first one occurred months ago when I discovered I couldn’t put on my left sock. Yes, just the left one.  Fast forward to now, if you put a pile of clothes next to me, the only thing I can put on without help is a shirt. Even then, I usually require assistance getting my hair unstuck from the neck hole. It’s mortifying and I feel so useless. Hopeless, some days… most days. Showering is a whole different ordeal – agonizing pain, panic attacks – they terrify me. How did life come to this? I’m sure my neighbors think I’ve lost my mind (and perhaps I have). Every time I have to leave home for a medical appointment, my husband has to take time off work because I can’t drive right now thanks to all this. Then he spends time helping me get ready, convincing me that I do have to go to the appointment, coaxing me out the door, dealing with me as I freak out over getting in the car (it’s about as painful and terrifying as taking a shower), and supporting me even when I’m giving up.

Next up is some lymphedema physical therapies in hopes that some of the fluid retention can be relieved, then there’s talk of sending me out-of-state to a specialized Scleroderma Clinic. I don’t know how long I’ll be continuing on the chemo, but that’s still a thing too. Speaking of, I’m starting to fade from the first dose (it's poison day) – the exhaustion is setting in, the headache, my arms are getting weak… who the heck turned up the heat in our house???

While I can identify things I’m grateful for in life right now, like being able to work from home full-time and having an incredibly kind husband, I can’t find the silver lining in all this yet. I’m usually really good at that, but not this time – and that is bothering me a lot.

And I’m scared. I’m scared that the stress all the fluid retention is putting on my body will kill me before any relief is figured out. And God knows no medical providers, as good as they may be, have approached finding a solution with the amount of aggressiveness it deserves… the amount I deserve. I’m growing tired. I’m trapped in this body, on this recliner, in this house. The world is opening back up as Covid-19 concerns calm down, winter is fading away, the sun is coming out… and I’m still trapped inside, away from everything.

Catching up... a lot.

October 27th, 2015 was the last time I published a blog post here. It was about the power of yet. 

Don't remember it? OK, fine. Go read it.

I'll wait.

Now that you are caught up, I have a little story for you.

That post you just read was about someone special... a man I had been spending time with every Thursday for over a year. We walked, talked, cooked, laughed... we had a real connection.

I lived Thursday to Thursday. 

The day I wrote that last blog post, we had gone to see a movie for our Thursday adventure. While he walked me to my car, I thought maybe that was the right time to tell him that I had feelings for him.  Usually upon thinking that, I'd get a rush of nerves wash over me, but I didn't. 

So, I went for it.

I didn't die, and he didn't judge me.

All he said was, "I'm not there yet."

YET.

That "yet" powered me for a few months, gave me hope that there could be something more, and that he had actually given it some thought already.

With each passing week, during the return trip home from our Thursday hangouts, I asked God what more I should do. Each time I got a feeling that I should just keep waiting and be patient.  On January 7th, 2016, I asked one more time.  I was like, "Alright, I can't keep waiting. I need to move forward or move on. This isn't fair to me, and it isn't fair to him."  I swear, I almost heard the words aloud right there in my car: "Just a little longer."

The next week, on January 14th, my good ol' hangout buddy asked me to meet him at the bookstore before we went to a movie. It was a random request, but nothing too crazy.  I agreed, and that was that.

Until...

We were perusing the aisles of books, talking about our favorite authors, and he stopped to tell me about a grand adventure he wanted to go on.  He wanted to take a cruise down a river in Germany to tour multiple castles and historic sites.  He started talking about different people he brainstormed to bring with him on this adventure, and I sort of checked out in my head wondering why on earth he was telling me all this.

Then it happened.

He said none of his ideas were good, and of all the people in his life, he kept coming back to me.  He wanted to go on that adventure with me, and that's why this was officially a DATE.

That first date was one of the happiest turning points of my life thus far.  We've enjoyed the last few years together, had our ups and downs, traveled a little, laughed a lot, and grown a ton. 

This wonderful man's name is Richard Ward.  I was friends with his mother, Becky Krizan, a few years ago through church.  She introduced us and was bent to get us to fall in love from day one.  For a while, I thought she was nuts, especially for being so convinced I'd be perfect for her son even though she didn't really know me yet.  Over time, I grew to love her like a second mother.

Then one day, Heavenly Father decided He wanted her back with no warning; that was a little over 4 years ago.  At this point, Richard and I were really just familiar acquaintances (it seems oxymoron-ish, but I'm making this a valid description, thank you).  The day of Becky's passing, Richard found me on Facebook and reached out to see if I was OK.  Remembering that impresses me immensely, even just now as I write it.  We became friends on Facebook that day, then I pretty much planned his mother's funeral service.  It was a true labor of love, especially when I had the unique opportunity to help dress her body for the family viewing.  I will never forget that experience...

This is how our weekly hangouts began; we both needed a break during a time of mourning, went on a walk on a Thursday afternoon, and decided we should do it again.  Walks turned to walks and movies, which turned into walks, movies, and a "Yeah, I could eat."  For a year and five months, we were strictly Thursday people with maybe two exceptions total.  It was our thing, and it's still our thing.  Date night is on Thursday every week; we swapped it for a Friday once and it felt like the world came crashing in, so it was decided we'd never do that again.

The greatest part is that date night can be on Thursdays forever now, because on May 17th, 2018, Richard asked me to marry him! We met up for date night after work, he handed me a dandelion, then a model train caboose (my favorite train car).  It was heavier than a typical model (hashtag train nerds) and I looked at him wondering what was going on.  He said, "Open it."  I replied, "But models don't open."  He answered, "This one does, just open it."

The roof came off, and there was an old opal ring of his mother's.

I cried.

Richard had been waiting to propose until the first sign of spring, a flower, had emerged in his sights.  The dandelions on that morning were in full bloom in his backyard, so I should probably thank them next year. Ha ha!

He explained that the ring was special because it was one he knew his mother had loved, but it was a placeholder so I could pick an engagement ring out that I wanted.  I asked him why he didn't just pick out a ring and give it a go.  His response was this, and I quote, "I knew better than to do that."  A few days later I picked out a ring that is beautiful, low-profile (I can wear it with gloves with no issues), unique, and totally me (black diamonds, come one, you know that's me).

Now that I have all the little details out (so many people have asked), I just want to take a moment to say how grateful I am for Richard in my life, and how excited I am to be marrying him in less than a year (May 2019).  He understands me, watches out for me, knows all my quirks and secrets, and is my very best friend.  It's amazing how life takes twists and turns unexpectedly, and sometimes later than we had planned on.  Neither of us are all that young anymore (I'll be 34 and he'll be 39 at the end of this month).  We're hoping we can have kids, but are bracing ourselves for challenges in that department based on age, known health issues, family history, etc.  We'll take each day as it comes, which I have grown more and more fond of doing as the years have passed by.  There's a nice charm in just going with the flow of things and dealing with challenges as they arise.

If you've made it to the end of this blog post, I thank you for spending a few minutes with me.

Sincerely,

The Future Mrs. Ward

My modified caboose-turned-ring-box and THE first dandelion of spring (in Alaska).

Richard's mother's long and well-loved opal ring.  

This is us!!!

We're goofballs... engaged goofballs!

My engagement ring arrived! I have fluffy but small hands, and this is perfect! 

A very zoomed-in but detailed view of my ring (back diamonds, I love them) and the wedding band to go with it.  Do you know how hard it is to find a thin band? I didn't want anything thicker than my actual ring and that was a challenge!  I have small hands, we need more thin band options! 

The Power of Yet

Yet.

You have no idea the power of this little word until it has been used in a sentence that leaves you praying that it was purposely placed to enlist hope in you, the recipient. 

This has happened to me twice in the last calender year. I am a phenomenally patient person, but this... this might make me explode.

How To Use My Rice Cooker

I think I'm having a "Throwback Thursday" moment, or whatever kids are calling it. Gosh darn it, social media has ruined our vocabulary!

Anyways...

A few years ago, I lent my old Japanese rice cooker to a friend for a few weeks. Since she had never used a rice cooker before, I included the following (warning: dry humor ahead) instructions for her:

Eh, this rice cooker thing is pretty easy to use.

When putting rice/water in the “bowl” part, just be sure it is out of the cooker first; the one time I didn’t do that I nearly killed the sucker.

The one button on the rice cooker has a small vocabulary and communicates 3 things.

1. When the button is level and not lit up:

 “I’m not plugged in!”

2. When the button is tilted and lit up:

 “I’m cooking your rice, be patient! Rice being cooked unattended is a miracle – miracles take about 30 to 40 minutes. Deal with it.”

3. When you hear a –Click!– and find the button is level and lit up:

 “Your rice is ready, I’m keeping it warm, get your butt over here and eat!”

A rice cooker is pretty much a Crockpot with a low GAF score. [If you’re unfamiliar with mental health assessment terminology, this probably wasn’t funny to you. Eh, your loss.]

The American way of cooking white rice in a cooker:

The best ratio is 2:3 rice to water (2 cups rice to 3 cups water, 3 cups rice to 4 ½ cups water, etc.).

1. Add measured amounts of rice and water to the bowl, rinsing it first if you desire.  Replace bowl in cooker. 
2. Put on lid. 
3. Push down Button. 
4. Wait for the –Click! –

And then there’s the right… I mean Oriental way of cooking white rice in a cooker:

1. Add enough rice to the bowl so that if were to put a finger in it the rice would come up at least to the first knuckle, rinsing it first if you desire.
2. Lightly shake the bowl to level out the rice.
3. Put your pointer finger straight down in the bowl, touching the rice with the tip.
4. Add water until it reaches the first knuckle.
5. Replace bowl in cooker.
6. Put on lid.
7. Push down Button.
8. Wait for the –Click! – 

Brown rice has issues.  Sometimes it works just like white rice and other times it takes more water.  Good luck experimenting.

Random commentary for the heck of it:

I recently saw a chart confirming that Americans have the highest BMI average in the world.  It also illustrated that people of Oriental descent take the lead in covering the lowest BMI average in the world, and several close to it. 

So, why are fat Americans so friggin’ eager to ditch white rice for brown? Millions of people much healthier eat white rice ALL THE TIME.

If the argument is about fiber… meh, I don’t buy it.  If they are eating enough fruits and vegetables each day per the basic food pyramid, fiber should be a moot point.  Brown rice vs. white rice is not going to make a difference.  If they’re doing all that and still feel like they need “help” to “go”… what makes them think brown rice is synonymous with PRUNES?

They need to “go” alright… to a doctor!

THAT is the woman I see in the mirror...

I was the bridesmaid in a friend’s wedding two weeks ago. I told the photographer, also a friend of mine, that I would happily be in any photo as long as I never have to see them.

And then yesterday happened.

The photos were uploaded to Facebook. I have been off and on again close to tears since seeing them.

I see myself in the photos, and that is not the woman I see in the mirror each morning.  The photo with this post... THAT is the woman I see in the morning. She's fluffy, but she's adorable and has a bit of pizzazz in her step.

I’m pretty real with myself about my body image. I know I am overweight, I have struggled with this my entire life… and I know it takes the world’s opinion about my level of attractiveness and kicks it in the shins. However, the photos made me feel like the ugliest and most unwanted person on the face of the earth (and it wasn’t the photographer, she did a great job on the wedding photos).

The last time I saw the clock before going to sleep, it was about 2am. I woke up multiple times during the night and come 7am, I got up with no alarm because I had nightmares about the photos all night and didn’t want to return to them. I arrived to work at 8:40am.  To most, this is a fairly normal arrival time.  For me… well, it was significantly early for my I’m-not-a-morning-person 10am-6pm schedule.

My anxiety triggers are generally anything to do with motor vehicles, and large groups of people/social situations.  Apparently, so is my body image.  I try to be strong and tough about it, but it is getting more difficult to cope with. 

I work hard to eat healthy. Heck, I eat healthier than most of my thinner friends. Seriously. Not fair? Yeah, I know. Exercise is something I need to work harder to include in my life; I know this. I have heard often that with weight loss, it’s like 80% diet and 20% exercise – so you’d think I’d be able to tackle this better.

Case in point, I am going to start a new chapter of becoming well again.

I’m tired of everything, and changes need to be made.  I’m especially tired of the last few years of being treated like a guinea pig/lab rat by various medical providers. Between the aftermath and effects of being hit by that drunk driver almost 10 years ago, my weight, and multiple misdiagnoses regarding what’s going on in my brain (currently we're down to temporal lobe seizure activity, anxiety, and possible PTSD)… I’ve been medicated off and on with several variations of poison for the last 5 years.  I’ve been put on Dextroamphetamine (Dexedrine), Lamotrigine (Lamictal), Tegretol (Carbamazepine), and the most recent round was Celexa (citalopram) – and it destroyed me.  I gotta tell you, the Lamotrigine and Celexa were the worst. Oh. My. Heck.

My next neurology appointment is in June, with an MRI scheduled during May.  I’m going to call my neurologist next week and tell him I don’t want to be put on any other medication until I see him again. Until then, I will be doing a cleanse and exploring some natural/homeopathic options for the anxiety, which will include working to get my weight down. I can’t control what happens on the roads, or how I react to social situations, but my weight… that’s something I can (with great effort) control. Right? Right???

Wish me luck, send over some prayers, and everything will be OK.