Dear Readers,

I have exciting news! Now that I have Internet on my Tobii again for the first time in many years, I’m better able to work on my blog. You may have noticed pictures, stylized text, hyperlinks, and more sophisticated auto share on Twitter and Facebook. If these changes haven’t caught your eye, no worries; just enjoy reading! Goodness knows I’m enjoying myself!

The truly major, exciting news is this: I’m notorious for only being able to read comments. I haven’t been able to post or reply in about 5 years. Well, one of the new tricks I’ve learned is fully engaging with comments – reading, posting, and replying. From now on, all comments will be made public… Unless you say in your comment that you want your comment to remain private! I will read all comments individually before posting. I have been honored over the years as you’ve confided in me about your marriages and mental health, your parenting and faith. Some of you have even become regulars. I hold these confidences sacred, and rest assured, I would never expose them by posting them.

Thank you for reading and for talking to me, especially when I am vulnerable.

Sincerely yours,
Rachel

By Rachel Doboga

1. Putting on blush – I am very pale, but oddly enough I have always gotten compliments on my skin. Evan says that’s because my skin is “porcelain.” Whatever the case, I used to put on very light pink blush. My mother taught me well – used it only on my cheekbones and blend, blend, blend! I liked the way it made my skin glow, but more than that, I loved the way the makeup brush felt on my skin. It was the most silky smooth sensation I have ever experienced before or since!

2. Chopping vegetables – I know this one is truly bizarre, but we had the same wood cutting board for at least 10 years, and I absolutely loved it! I liked the sound and feel of cutting through the thick stuff like carrot, zucchini, and onion. I was actually the designated onion chopper because, while chopping an onion made Evan weep, it didn’t affect me at all. I’m leaving out fruits. I’m so rude! My favorite fruits to chop were “donut” peaches and gala apples. That cutting board made it through seven moves!

3. Changing radio stations in the car – I realize this one will make me seem ancient because now everyone phones that play music, but we didn’t have any of those things when I was growing up. The best we had was a CD player and a giant book of CDs. Who was in my book? Everyone from Frank Sinatra to Evanescence, from Opera Babes to Pat Benatar. There was a certain magic to the gamble of scanning my favorite stations and either finding nothing, or finding the perfect song I didn’t even know I needed in that moment. I miss the feel of pressing those six presets and waiting for enchantment.

4. Writing with a ballpoint pen – I actually did so much writing with ballpoint pens that the side of my hand was almost constantly stained with blue ink. I refused to use a red pen when grading quizzes, tests, and essays because it was, in my opinion, too aggressive for assessments students were already nervous about. I also used the deliciously smooth gliding ballpoint pens for grocery lists and “to-do” lists in my planner. I always loved checking items and tasks off my lists. I felt so accomplished, and the ink stains on my hand were proof of organization and hard work done!

5. Grocery shopping – The possibilities seemed endless! I loved shopping at Trader Joe’s especially so I could surprise Evan with sushi, shu mai, gyoza… The only thing better than shopping without him so I could surprise him was shopping with him. We would hit produce first. My favorites were strawberries, gala apples, zucchini, sweet Vidalia onions, tomatoes, sweet potatoes, and broccoli. Our shopping carts were rainbows! Then we would split up to conquer the list, crisscrossing and smiling at each other like absolute fools as we shimmed through the tiny, packed aisles. We would meet up at the cheese and hummus station where Evan would grab the things I was too short to reach. It was always an adventure!

* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!

If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a contribution to Rachel’s out of pocket caregiving fees, medical expenses not covered by insurance, and transportation costs through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

By Rachel Doboga

“We used to laugh under the covers, maybe not so often now…” – Dave Matthews Band

“Alright, I chose Italy. Your turn. Where do you want to go?” Evan asked.

“Guess!” I tease.

“There are so many places on our Bucket List. Give me a hint.”

“It starts with I…”

“Ireland?”

“Not even close.”

“Just tell me!” Evan begs.

“India. I have it all planned. We’re going to go to Rajasthan, northern India so we can go to the camel festival in the desert and see the stars. Also the Taj Mahal and a tiger safari.”

“One last trip before kids?” He says with a big smile.

“Yes,” I say with a matching smile.

8 years later…

“I had a nightmare that I found a cure, wove it into a bracelet, and gave it to you  but you were so angry that I need so much trach suction that you tore it up, and it became bloody,” I tell Evan.

He comforted me, but I can’t shake it. We also can’t shake a dream Evan had a few months ago. I was cured and he was so excited and happy, but then I kicked him out. Obviously I would never do that – Evan is my world – but it is still haunting.

It used to be just the two of us, playful and relatively carefree, but then a third party joined our relationship – ALS. Being in a relationship with ALS requires absolute trust and unity, so the tougher things get, the more we pull together.

I do have a lot of guilt about everything Evan has had to give up for me. We never made it to India and worse, we never became parents. However, he says he’s lucky to take care of me. Clearly I am the lucky one, though. I consider Evan the Universe’s way of paying me back for ALS, but it falls short because I can’t touch him. I would give anything to hug my husband.

When our beloved dog Malka died in front of us on September 26th, Evan ran over to me and hugged me, sobbing. It was all he could do to hold me upright because, as a quadriplegic, I am totally limp. I couldn’t hug him back. To this day, I wonder if holding me was enough for him, or did he need my arms around him? I’m not brave enough to ask.

During my various hospitalizations I have learned one thing for sure, though. Watching Evan hover over the hospital bed, rattling off my extensive medication list and three allergies (macrobid, zoloft, and above all, morphine) and running my oxygen when the hospital is short-staffed, I have seen the anxiety and fear in his eyes. I know now that the only thing worse than having ALS is watching a loved one suffer through it.

* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!

If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a contribution to Rachel’s out of pocket caregiving fees, medical expenses not covered by insurance, and transportation costs through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

By Rachel Doboga

I wish I had been well enough for a post on Christmas and New Years, but that wasn’t the case. I’m in rough shape. Another lung infection on top of severe muscle spasms on Christmas eve kept us busy through the holidays. Fortunately, I don’t remember Christmas eve because my BP dropped and I lost consciousness.

I’m lucky Evan knows how to handle all this because the hospitals are way over capacity here. Emergency rooms are built for 125 people and they are treating 500 people. They are treating people in the hallway because of COVID, the flu, and RSV, so Evan has been working as my ER doctor around the clock to keep me out of the hospital.

My PIP* is still way too high – 35 and the alarm is 45 – but they said there’s nothing they could do for me at the hospital that we can’t do here unless my oxygen drops. Fortunately, it’s stayed at 97 even when I’m having a coughing fit. I blame a lot of this on the death of my dog Malka. I depended on her very heavily.

*PIP is Peak Inspiratory Pressure – the pressure it takes to push air into my lungs… My usual PIP is 25. Being on life support is complicated!

Three days later…

Unfortunately, I ended up in the hospital again. I was in the ER about 12 hours for bloody urine, bowels pushing on my lungs, and a low-grade fever. Let me tell you, it was absolutely packed! They were 5 times over capacity and treating people in the hallway just like I heard. Luckily, I got a room because of my ventilator.

I was able to go to my primary hospital so the experience was much better than my October hospitalization at my secondary hospital. I have been sleeping most of the day, which I am grateful for because my bladder hurts!!

My home health nurses thought I would be there for days, but the hospital doctors always say I’m a good healer, and the nurses say I have angels by my side. I always get out early!

* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!

If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a contribution to Rachel’s out of pocket caregiving fees, medical expenses not covered by insurance, and transportation costs through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

by Rachel Doboga

I decided that the most accurate way to share my hospital story is to share my journal, so I am making myself vulnerable by sharing it with the world. I have only cut out one health detail and added explanatory information where needed.

Sunday, October 16th, 2022

I’m not Ok. Not at all. I spent last night in the emergency room and got bumped into the IMCU around dawn. I have a serious infection in my gut. I vomited 11 times in 6 hours and was aspirating so drastic measures had to be taken. I had to have a suction tube threaded through my nose down to my stomach!

Let me tell you, swallowing that tube was no easy task. They immediately pulled 2 liters of fluid from my stomach! I also have pneumonia and a miserable migraine. Between the florescent lights and loud voices, I just can’t catch a break!

On top of all this, I can’t rest. Not without any meds. They’re withholding all 18 of my medications except the few that can be given through iv because I can’t keep anything down. I am exhausted. I haven’t had more than two hours of consecutive sleep since my nap Saturday. I’m having trouble following a single line of thought. Even though I already know the answer, I keep asking for meds for nausea. Of course, they keep refusing. The nurse said, “You can’t have any meds so you’re just going to have to be nauseous. Today’s going to be rough.”

Every time I write a worry or complaint, I try to find something to be grateful for. Today, I’m grateful that I stopped vomiting and that Evan holds my hand whenever the nurses let him close. I’m also grateful for the iv antibiotics fighting my pneumonia.

Monday, October 17th, 2022

I just said this to Evan – “I don’t like our nurse. She kept saying that there was nothing she could do when she kicked you out for a COVID test that SHE decided you needed, but as soon as she needed help with the tobii (eye gaze computer), she said “We’ve got to get him back in here.” That’s when she called you.”

Upon hearing this, Evan said, “We just have to be warm enough for each other.” He has the heart of a poet.

Later…

They keep turning me and laying me flat, so now my lower back hurts more than the migraine! However, they are giving me a full mg dilaudid every two hours. It helps a lot. My uncle, a retired anesthesiologist, calls dilaudid “morphine’s big brother.” My primary provider at the ALS clinic really wants me off narcotics, but saying no is very hard! I will definitely start turning down all narcotics tomorrow.

I’m grateful Evan got to return quickly. Also, I’m grateful that my mom flew across the country to be with me and help Evan (he never leaves me alone in hospitals except to jog to the cafeteria)! With my mom here, he can go home to shower, eat something healthy, and spend some time with our little chihuahua Pickle. Pickle was pretty mad about being left alone by his favorite humans just three weeks after his big sister Malka passed, but he came around. I’m infinitely grateful for my mother-in-law / fairy godmother for feeding Pickle and letting him outside.

Tuesday, October 18th, 2022

I forgot to tell you about the drama with the scan of my lungs on Sunday! They wheeled me out of my hospital room on a gurney for a CT scan of my lungs and then transferred me to the table for the scan. However, my lungs couldn’t handle all the movement. My numbers started going crazy! I think my PIP (Peak Inspiratory Pressure – the pressure it takes to push air into my lungs) reaching the danger zone was what freaked the CT techs out. They all started swearing which was really scary!

I’m grateful for the technology that allows my doctors to see what’s happening in my lungs, and I’m very grateful to the angels by my side that protect my left lung – the one that is partially collapsed – from completely filling with fluid like last year.

Wednesday, October 19th, 2022

They said the nose tube would only be in a few minutes, but it’s been 4 days! I’m absolutely miserable. I’ve never felt so bad in my life! 

I’m incredibly grateful that I got ALL my meds back!!! I’m also grateful that my mom is such a fierce, outspoken advocate for me that I’m comfortable with Evan going home for a few hours.

Friday, October 21st, 2022

I was unable to write Thursday because someone gave me dilaudid even though I specifically refused it at the same time as tizanadine and lorazepam so my BP dropped to 67. It took TWO doses of midodrine to revive me. I don’t remember any of this, by the way.

My reaction to so many meds at once made them afraid to give me any painkillers at all! They were reluctant to give me tizanadine, too, even when I had severe muscle spasms that evening. Evan had to advocate for me and coach my breathing during the hour long wait for the muscle relaxer.

“Try to rest and relax,” he said in a calm, steady voice.

“I can’t! I’m in so much pain and the bed is making it worse!”

Evan looked around for the power button and turned off the bed. The relief was instant. Painful still, but at least my sandbed wasn’t shaking me.

“I wish we were home so could just give you the tizanadine,” Evan said. On nights like these he looks ancient, way older than 36, but I still think he’s the most handsome man in the world.

I’m grateful I have the most compassionate husband in the world. I’m also grateful that my mom sits with Pickle when it is her turn to shower and eat. He’s been acting really weird ever since Malka died. He’s just not bouncing back. He stares at Malka’s bed for a loooong time, circles the house hopping on 3 legs (we’re brainstorming how to afford surgery for his bad leg), comes back to her bed and stares again. He also cuddles in the blanket where they used to spoon.

Monday, October 26th

I’m home! I have to catch you up, dear journal. I’ve been too weak to type so Evan went letter by letter and watched for my blinks to form words.

Now for story time. I’m entitling this tale: “Hospital of Horror.”

Evan turned his back for one minute and they gave me morphine even though I have a well-documented allergy to it! It was awful. I had these terrible hallucinations that there were bugs swarming all over me. Evan talked me through it, explaining that they don’t have bugs in hospitals, but it was horrible all the same.

Then every time they turned me, my BP dropped to the mid-80’s and I felt like I was dying, so Evan took action. He acted as my respiratory therapist and ended up managing my oxygen! Thank goodness he’s so smart; he picked it all up right away. 

I’m grateful Evan is so involved in my care. He will make a great respiratory  therapist after I die, but for now he seems content to be my primary caregiver.

I’m also grateful that I AM HOME! Colored Christmas lights around the ceiling of our bedroom, my own bed and clothes, our bird Jasper singing, Pickle begging for everything from tortilla chips to eggplant, I missed it all!

* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!

If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a contribution to Rachel’s out of pocket caregiving fees, medical expenses not covered by insurance, and transportation costs through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

By Rachel Doboga

“No pills for what I feel. This is crazy!” – Neko Case, “I wish I was the moon tonight”

I have medicines to protect me from anxiety, depression, even nightmares, but there’s no medicine for sadness and fear. I could have really used a pill for those emotions after my diagnosis and over the years of my battle with ALS. I especially could have used them in September. The entire month was hell.

As I always say, when you haven’t heard from me in a while, something is wrong. Well, in this case, nearly everything is very, very wrong. In early September, a tumor the size of a golf ball appeared on my dog Malka’s ribs overnight. Literally. It was a shock to say the least. My very kind in-laws paid for testing. We found out it was very aggressive cancer. By the time we put her to sleep, the tumor was the size of a softball.

Malka died a horrible, painful, LOUD death. I still think I hear her moaning in pain in the night. If I didn’t wake Evan fast enough or it was too soon for another round of painkillers (it always was towards the end), she would start barking in pain. I was especially hypervigilant when she took to hiding across the house in the closet in Evan’s office. That’s where she used to hide from fireworks, which were pretty much her only fear. She was a fierce protector. It was so painful to witness that. It was like she thought she could hide from the suffering. It was hell being so helpless.

Malka was the best dog in the world, and I don’t just say that because she was my dog. She was perfect. No temperament or behavior problems. Totally healthy her whole life. She was so sweet and at the same time, very protective of me. She actually saved my life twice.

Even towards the end, despite her pain, she guarded the bedroom door while I napped, as if she could do anything if a bad guy showed up. Still, she couldn’t break the habit of protecting me. No guarding on her final day though. We kept her busy catching her beloved fried shrimp tails and even a few whole fried shrimp in the morning. That’s the last thing she ever did. Then came the pills.

Evan took such good care of her, especially when it got bad. He was her hospice vet. No one could have done any better by her. He barely slept because Malka needed so much in her last days, and she was so scared to be alone. I’m having trouble using the past tense. Everything with her will forever be past tense.

I kept having nightmares she died without me, but my wonderful husband was absolutely committed to getting Malka in the bedroom so I could be a part of her final moments. Following the advice of Melissa, the best vet and the best best friend in the world, we sedated Malka very heavily with three painkillers before the arrival of the vet who delivered Malka from the agony caused by that evil enormous tumor. She fell asleep in a patch of sunshine in the living room, content because at last, she had all the painkillers she could want. I will always remember Evan saying, “We’ll get her in here even if we have to carry her.” In the end, that’s what they had to do. They used the stretcher the vet brought to carry her away after she passed.

My generous parents and sister paid for in-home euthanasia. Malka needed so much help getting in and out of the car in the weeks before her death, and she was so tender to the touch by the end, if we tried to get her to the vet she would have spent her last moments in agony and terror. I’m grateful to them for saving her from that and giving her a degree of peace.

Melissa told me that the word “euthanasia” translates to “dying well” or “a good death.” I kept repeating that to myself as the vet who would put Malka to sleep arrived. The vet was very compassionate and good at explaining everything she was doing. There was no rush, and she was very respectful of our privacy. I read Malka a story I wrote about heaven (see below).

My caregiver stayed in the room to wipe my tears so I could type my last words to Malka (“what a good dog” and “I love you”). I was able to use my own voice so she would recognize me because I recorded some phrases before I lost the ability to speak five years ago. I used my own voice a few days before her death to tell her she’s a good girl, and Evan said she looked up. That meant the world to me. My caregiver even cleaned up the puddle of urine where Malka lost control as she passed so Evan and I could cry together. It truly was a good death, just like Melissa said.

Here’s the story I wrote for and read to Malka –

Dearest Malka, you’re going somewhere very special where you’ll be young and healthy forever. It is a meadow with tall beautiful flowers where it’s always summer, and it’s surrounded by big trees so you can cool down in the shade after you have been sunbathing too long. You will have pizza crusts and fried shrimp tails for every meal. There are plenty of elk for you to chase, and we will all be together before you know it.

* I can’t post comments or reply to them, but I can read them and I love them. Keep writing.

If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a contribution to Rachel’s out of pocket caregiving fees, medical expenses not covered by insurance, and transportation costs through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

By Rachel Doboga

The last few months have been incredibly difficult. As I always say, when you haven’t heard from me in a while, something is wrong. In September, I suffered a major loss, and my mental and physical health spiraled out of control as a result. I’m still recovering. It will definitely be a long grieving process.

I have been so sad and sick that I almost didn’t write a Thanksgiving post. Then a friend shared a poem she wrote that inspired me to be grateful in new ways. I hope it inspires you too. Happy Thanksgiving.

“Goodness of His Soul”

I pray thank You.
Thank You when I wake.
Thank You when I lay
my head down to rest.
Thank You for
the life You grant me,
the love You place within me
and surround me with.

To read more of my friend’s wise and beautiful poetry, visit thepoet.online

* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a contribution to Rachel’s out of pocket caregiving fees, medical expenses not covered by insurance, and transportation costs through Friends of Rachel. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com