Sunday, June 21, 2020

Ice Cream Sundaes and Oversized Sleep Shirts

Ice Cream Sundaes and Oversized Sleep Shirts

“Let’s go! Get your shoes and coat on, we’re going to the store.” 
“But Daddy, it’s 8pm the stores are closing soon.”
“Perfect.”

It wasn’t the first late-night trip to the store. It wouldn’t be the last. 

Maybe it was boys being mean, school being hard, or the unsteadiness that growing as a teenage girl causes - but he knew the right thing to do. As his freckled hand turned the brass knob to the front door, I remember being mesmerized by this force of a man and how different he was than any of my friends’ dads. The wind bustled causing leaves to blow into the community hallway of his apartment building. I asked him if we should clean up first, but ever so coolly he replied, “Ashlee we have more important things to do”. 

 I guess for most kids being different and set apart was not something that was celebrated. The epitome of pre-teendom, after all,  is to not stand out. And in some ways, I molded myself into that belief system too. But he made being different, being set apart, being exactly the type of thing you didn’t see coming -- a joy. I’d be lying if I said this out-of-the-norm sense was always celebrated by me. I probably wished he'd be like “regular dads” a time for two -- but “regular” wasn’t a word in John Haggerty’s vocabulary. 

He may not have had life figured out, the way people think you should. He didn’t own a home, he wasn’t in a partnership, and financially he was always teetering that edge of survivability.  I wouldn’t learn about the importance of investing, how to change a tire, or a myriad of other “dad wisdom” that Hallmark always mentions on their Father’s Day cards. 

We got to the grocery store, and expertly navigated the same aisles I knew we would. We didn’t consult the advertisements for sales -- this grocery run wasn’t about filling up the pantry, it was about filling up the heart. $40-some dollars later we were set. Two grocery bags filled with the makings of the best banana splits to ever exist. And for good snacking measures, Diet Coke and Made-Rite BBQ chips. 

I don’t remember this specific occasion, but I’m sure walking into his home, at that moment, felt like an embrace. My dad’s house always smelled the same. It’s probably one of the smells I miss most. When I close my eyes now, I can still feel the texture of that oversized floral painting, I can remember how it felt to curl up into his oversized couch, and I smile mentally notating all the Irish knick knacks strewn about. 

When I say, “the best banana splits to ever exist”, I mean it. Or, that was the goal anyways. 
“Neapolitan”
“Check.”
“Extra French Vanilla for my favorite daughter?”
“Check.”
“Maraschino cherries, peanuts, pineapple, whipped cream, chocolate, caramel, and bananas?”
“Check, check, nice try, check, check, check, and double bananas for me.”

We unpacked all the ingredients and laughed about how “this” would be our greatest masterpiece ever. Each time we partook in this sacrificial meal we vowed to make it so. 

His favorite part about the banana splits was presenting them to me. I followed the drill. Tv on. AMC old movie found. Cozy blankets on the couch, ice water on the side tables. And I changed into the world’s best pajamas ever -- my dad’s oversized shirt. If I picked we probably watched Gone with the Wind, An Affair to Remember, White Christmas, or even The Bells of Saint Mary’s. If he chose it would be something with Bette Davis, Marilyn Monroe, or Katherine Hepburn. 

“Are your eyes closed?”
“Yesssss Dad….”
“Okay, 3, 2, 1… open”
I gasped. Maybe I gasped because it was amazing,(as only the best banana split could be), or maybe it was out of ritual and wanting to make him feel good. But either way, my gasp was as effective as his dramatics. We played off each other well. 

He sat on the right side of the couch, me on the left. We would start out apart, but once my tasty treat was done, I would always end up scooching closer to him. I can say with certainty, no matter what we watched it made me forget about whatever was upsetting me. At that moment it was just us. Boys? Who are they? School? What is that? I was submersed in the world of dramatic old movies with my dad. 

There would be no long talks about my feelings. I wouldn’t recount every detail that upset me to him and he wouldn’t toll out advice.  He instead stood as an oak tree.  He sat with me in my discomfort. The roots of our love were deep and his arms sheltered me from the storms, but he never tried to take over and presume he knew my experiences. I still had to walk through the hard times, whether they be major issues, or a childhood whim. But I knew I never would need to walk through them alone. 

I wish I knew when the last banana split encounter was. I wish I could remember every single detail. I don’t. But what I do know, the only detail that really matters, is how it made me feel. Sometimes in life, banana splits are just ice cream, and oversized t-shirts are just pajamas. And other times, they are the more important things to do

Sunday, January 12, 2020

My Dad Is Dead

V O L U M E 1

My dad is dead. That sounds dramatic -- and I guess it is --- but mostly i just had to get it out in the open so we can just get on with it. So we are on the same page, eh? yas.

My dad died, and I wasn't there. I'm still not. I don't know how to be.

I'm still not there . What I mean by that is that 10 years later --- I still can't be in that moment. The moment I got the call. When I start to think about the moment I shrink inside myself like a child and run.

I had been working at subway at the time. I had missed a couple calls from Michigan the night before and I was so tired when I got home that I didn't even listen to the voicemail. I assumed they were debt collectors. Since leaving Michigan, and my divorce with my ex being finalized, and I just didn't want to deal with it.

I got a call from a Michigan number so I decided to answer. It was the wrong number, they were called to ask me about organs. They mentioned my dads name, but i figured this was because of  his drivers license or something.  While on with them my mom called and I switched over.
It was around 5 pm . I answered it to see what was up. She had just returned to Michigan from visiting me in Florida, and I wanted to make sure all was well.

"Honey, I...need to talk to you..."

There was something in her tone that seemed off. It was like every cell in my body shriveled up in anticipation.

"What's up mom? Did you get unpacked?"

"Ashlee I love you. I need you to listen carefully."

"uh okay, whats up?"

"I just spoke with Aunt Mary. Daddy got in an accident at home, he had to go to the emergency room. He had an aneurysm."

"oh my gosh, thanks for telling me. how is he doing, which hospital? "

"Ashlee...."

"mom he's okay right? he will be fine?"

"Ashlee they tried to save ..."

"MOM tell me he's okay mom. mom he's okay right? let me talk to him"

"They tried honey, they couldn'-"

"stop saying that mom. stop lying. stop saying that to me. what do you mean. stop it mom. stop. i want my dad where is my dad"

"daddy died Ashlee"

Those three words. They were a start of a revolution in my life. Those three words punctured me and all that I am and it's in those three words that the darkness began to creep in. I didn't know it at the time. I didn't know that 10 years later i would still be overcome with darkness.

I couldn't speak. I remember her yelling in the phone, "I need to know you are okay. ashlee. i need you to talk. i need to know you arent okay. i need you to call doug. you can't be alone. ashlee? ashlee?"

I summoned the courage to speak. "Im ok. I have to go. i am going to call doug"

"call me right back"

Doug had been working at Verizon. I called his cell. over and over with no response. I called his store and no one was answering. Apparently it was a busy day.

I didn't know what to do. My blood was flowing through my body in a way I had never felt before.

I called Doug's mom. I don't know why but I knew i couldn't be alone. I needed her to find him.

"Hello? "

"Hi Betty, it's Ashlee. I need you to get ahold of Doug as soon as possible. He isn't answering his phone"

"What's wrong?"

There was a pause I didn't see coming but makes perfect sense now. How do I say this outloud? I had only just found out and already I had to say it out loud.

"My.. my... my dad died. I just found out."

"Oh Ashlee." she wept.

In a matter of fact kind of way .... almost as an announcement to myself and her, i heard myself say
"This is the worst thing that's ever happened to me"
"I will find doug immediately"

We got off the phone in some way. I don't remember.

I called Andrea and Joshua.

I don't remember the conversations, really.

I don't remember when Doug made it home, i just remember crying so hard in Doug's chest that night. Harder then I knew possible. I could feel my heart breaking with each breath and it was physically painful. I'd fall asleep for a few minutes while taking a breath from the tears, wake up and say "Did I dream it?"

------------------------------------------------------------------------------------------------------------

My dad died the night before. The missed calls were the hospital and the organ donation call was legit. I was the next of kin and they had to know if I wanted to donate my dads organs.

My dad died the day before and I didn't know. I didn't feel different. I didn't feel my heart breaking when his stopped beating. I had absolutely no indication. He was gone for hours before I ever knew.


I know this will sound unusual. It's not me not being in Michigan to save him that I am so guilty of.  What i need to forgive myself for is not knowing he was gone... and for still even to this day not being able to be in that moment.

I need to forgive myself for my inability to talk about him without breaking apart.
I need to forgive myself for having no photos of him up, for not talking about him much at all.



V O L U M E 2

I woke up suddenly last night. I was shaken up, in more than one way.  He visited me in my sleep. I don't remember much about the dream, I just remember dreaming that he was gone. I remember that feeling (which would greet me again in a few short minutes) where every cell in your body tightens.  I dreamt that he died.  I don't remember the hows or whys of it. I just remember someone told me he was gone and my entire life crashed before my eyes.

I was relieved when I woke up. It seemed like I had been dreaming for years. It seemed like more than a century I believed my dad was gone. But I was awake now. I could hug him. I didn't have to wear that same ugly black and white bathroom robe that hands from my bathroom hook that smelled like him. I didn't have time to process all the things that knowing he was alive would mean because I was interrupted with sharp, searing pain.

"No, you were dreaming. Your dad is dead Ashlee"

And then I remembered.

I remembered again. I remembered over and over. I remembered why the pain was so familiar. I'd been feeling some form of it for more than a decade.

He was gone, and he was still gone, and I remembered.

The start of this recollection can be found here: My Dad Is Dead: Volume 1

When my dad died, as I mentioned before, I found out from the organ donation people.  I booked a flight that night for the following morning. I didn't think I'd sleep that night at all. But our body has a miraculous way of doing exactly what we need it to even if we protest. I fell asleep eventually. I didn't sleep all night, I spent that night sleeping for about 20-30 minutes, waking up to look up and Doug and ask if it was still true, and then I'd wail myself to sleep again.

Once I arrived in Michigan, I had to go directly to the funeral home.  There were decisions to be made and I was the only one to make them. You don't think about that when you are the only child of a parent, and for all intents and purposes are a child yourself. I sat at the table with my mom, and my dad's siblings and I were asked questions. I felt like I was watching it happen from afar. Once we worked through the details, the flowers, the length of service, and whether it would be a cremation or burial, the attendant asked me a cruel question.

"Would you like to see him?"

Would I like to see him? I suppose that's the way you would ask that question, it would be weird to say "Would you like to see the body" or "Would you like to view the deceased" when you are talking about your own dad.  But it felt cruel. 

I don't know if its better to  (better seems like the wrong choice, but work with me here) see your loved one passed away in the hospital or not. I've only really experienced the latter. Part of me wonders if seeing them in a medical facility would be less shocking --- but on second thought I suppose the shock of the event overshadows the location or setting.

I had never really been comfortable at funerals seeing a made over body lying there in a casket. It never truly looked like the person, and there was something about it that triggered a fear in me. I wasn't afraid of something happening, I was scared of the finality of it all. Of knowing that this was the last time I'd see the person. To look death in the eyes and know death won. 

"Miss Haggerty?"

"Yes? Oh. Yes."

I remember thinking at that moment I mostly said yes because I knew that was the appropriate response. I have had a tendency of doing that in my life. I say the things that are the most palatable answer for those around me.

I was lead through a room that was smaller than expected and I saw a mass laying on the table. I was offered privacy and mostly nodded because well, I don't really know why.  I don't remember if my family was in the room or not with me. I just remember there was a lot of space between that body and mine.  I instinctively took a step forward, I didn't have time to tell myself to be brave or to mentally remind myself that it was going to be okay.  My eyes met his face.

It felt at that moment that hours passed, although I know it was for a moment. I couldn't touch him. That was my dad. The man who made such a big deal out of all my birthdays that I grew up thinking being born on 6/26 was more special than every other day of the year. This was the man who was a physical light to every room he walked in. My dad who stayed up at night watching old black and white movies with me over the best banana splits ever made.  He called me his lucky star, he couldn't have loved my bright red hair more. There laying on the table was my lifeless dad... but yet it wasn't him.

It wasn't him of course because he wasn't singing loudly off key, or bargaining with someone about trading home decor pieces. It wasn't him because there was no smile, no grey-blue eyes staring at me, no lips calling me "Ashlee" in only the exact way he did.

But there was another reason it wasn't him.  He was small.

A few years prior to my dad passing I moved to California. I wasn't there long, although in retrospect for such a short period of time, it weirdly shaped a lot of my life after.  After I returned to Michigan from California, I stayed with my dad for a short period of time.  My dad had weight loss surgery during that time and was just beginning to lose weight as I followed my journey to Florida.  The day I left for Florida, was the last day I would ever see him. When he hugged me, he was still soft and substantial. The same bear hug I had received my whole life. While I did see a photo of him at a drastically smaller weight while in Florida, and as we talked on the phone several times a week he kept me updated on his progress, I had never seen it with my own eyes.

This man laying on this table who looked a lot like my daddy wasn't him. He was so thin.

I think psychologically that has a lot to do with the issues of it all. I saw my dad's body there --- but it was not the body I recognized.  It was him but it wasn't.

I wanted to be strong. I was the one who was supposed to be strong. The decision maker.

But I couldn't. I couldn't be in that room. I couldn't speak to him one last time and tell him all the things my heart ached. I couldn't look at his face and hands, the only recognizable parts and bid my dad goodbye.

All I could do was run.
One could argue this as a running theme in my life. Run to marriage. Run from marriage into the arms of new love. Run from that love to the arms of pain. Run from pain to the love of my Dad.  I've run a lot.

So I ran. I ran out of the room and up the olive green carpeted stairs. I ran through the memorial room, out the door to fresh air. My lungs burned. Not from running, from not breathing. I don't know how long I didn't breathe, but it was enough to hurt. When I got to the parking lot, I intended to run to my mom's car, but quickly made a turn around the corner when I saw more family members approaching the building needing desperately to wrap their arms around me.

Typical Ashlee would have piled on their needs and succumb to the hugs, ignoring the instinct to run. But in this instance, I was no longer in control of what was happening. I ran. I ran so long and far. We were in MY town. The town I grew up in. I knew the streets, and buildings, and people. So I ran. And when I couldn't run anymore, I walked.

Somehow the running gave me enough energy to get back to the funeral home. An out of body experience of signing contracts and going over finances ensued.  I made it through.

My Aunt asked me if I was staying at the house.
She meant his house.
I never thought this far ahead.  But surely I would be comforted by it so I nodded.

As we pulled up to the house and got out of the car my cousin Scott, the oldest of my two cousins saw me and ran to me as he yelled out "Ashlee".  He knew this pain too. Him and his sister, my beloved cousin Lisa.  They lost their dad too. When he said Ashlee, it was in such a way that he understood the pain I experienced. This was an embrace that I too embraced.  I feel like seeing him and Lisa gave me the strength I didn't know I needed as I walked through the door.

I walked in and the house was as I expected it would be. It was perfectly him. The smell of his house was always the same. There wasn't an emptiness you might expect. It was just as if he ran to the store and he would be right back. There was milk in the fridge,  rye bread by the toaster, and coffee still left in the coffee pot.  For a moment I was fine.

Maybe not fine.

For a moment I was protected?

I walked into the bedroom, the bed was unmade. You could see the outline of where he laid and I collapsed. I collapsed into the bed and cried for hours.

My best friend Andrea came over after work, and she crawled into the bed because I couldn't move as I just cried and cried and told her I couldn't do it. She said two words that were probably more comforting to me than any of the others in the coming days. She said, "I know".  She didn't try to pacify me, she didn't tell me it would be okay, she didn't ask me questions about how I was doing or what happened or anything like that. She knew. She hadn't lost a parent, but she knew my dad. She knew that me losing him was impossible. That there was nothing that any person could ever say. She just knew.  She laid with me and I slept.

The next few days were hard. I had to make calls to people. I had to see sides of people I didn't expect. Ugly sides. Mostly I had to comfort. That is the weird thing about funerals... you go to honor the person sure, but you also want to support and comfort the loved ones... but so often they end up supporting you.

So many conversations. So many tears.

I packed up his home and had to sort through the things that I wanted to keep. How do you narrow down what is important and what isn't? I held onto more items than I needed to, in an almost desperate attempt to have as much of him to myself as I could muster. 

My dad is dead, and part of me died too. One day, I'll talk about him without shedding a tear. One day I'll tell you the greatest love story. But not tonight, tonight my dad is dead -- and I survived. 

Saturday, December 14, 2019

I almost died.

Updates from recently hospitaliztion to keep a record
Hey guys -- send me your prayers and good vibes.
I don't normally a lot of personal stuff, but I'm in the hospital for a few days and have gotten some calls/texts.
I have an infection that is causing me some major pain and stumping the docs a bit.
Thankful to have a team in place and family and friends sending their love.
❤️❤️
Ash

Update 1: I'm struggling to keep BP up and pain down. CT looked better than expected.

Update 2: the infection appears mostly superficial soninwill see a wound doctor. Biggest issues are the degree of pain I'm in. My body has a rash covering approximately 70% of my body and it burns deeply. Switching to new meds (steroids) , which makes me nervous. The doctors are very concerned as the rash is only getting worse :( prayers please. My blood pressure is slowly coming up but my heart rate is too.

Update: 3: skin reaction has gone down slightly. Will see an infectious disease doc and surgeon today. I will find out if surgery is required. BP and heart rate have stabilized. Currently on fluid, antibiotic #4, steroids, benedryl. and morphine. Pain is very bad, but I'm hopeful with the new improvements. Last night I had a fever, praying that stays away too. The staff here has been incredibly kind.

Update 4: the infectious disease doc thinks there is viable tissue under the necrotic tissue. He is trying to avoid surgery (recovery is much quicker without) so we are trying a enzyme that will help destroy the bad tissue. This can take a few days to do it's thing. If that was the only issue I'd be released, however my body is covered in a hot red rash and I'm still battling a fever and higher white blood cell count. My magnesium is also low so they added a magnesium solution to my meds list while.here. I was able to sleep last night. Tomorrow I will try to drop down to Percocet from morphine. The longer I'm on IV pain management the longer I have to stay. 

My immune system is very compromised right now, and Charley is sick so it's a blessing to be here in some ways. Douglas is doing a great job taking care of them!

Update 5: the rash has gone down some. However it's being replaced with small blisters all over. This is problematic because the original wound also was a blister so they are concerned with that, also because they are on my back and sides so laying down is painful. If you know me, you know that my veins are tiny...unfortunately my vein for my IV blew last night. They had to try for about 30 minutes to get another one because the IV team doesn't work in middle of night. They were able to get one in my left hand over my knuckle but it's VERY uncomfortable, and unfortunately the gauge is only small enough for fluid not antibiotics or pain meds so that will need to be switched out. Hoping the IV team will find the best vein possible with the use of ultrasound. 

Surgeons are still on fence about surgery. Definitely will not be released today. My potassium and magnesium are low so they are hanging meds for that too. My white blood count has started trending down which is great, it means the infection is going away. 

I miss my family:( this has been very difficult being gone away from my kids on vacation to Michigan only to be nearly immediately admitted to the hospital. Today is day 5. 

Thank you everyone for the calls/texts etc. They really brighten my day and help me cope with the lonliness. It's hard with having just moved to a new city, Doug hasn't been able to.come up and see me except very briefly on saturday.

Specific prayers: Great IV, Blisters stay clean and not infected. Pain management. 

I am so fortunate to have healthcare when it is denied to so many in our country and globally. I have compassionate healthcare workers, family, and friends. While some people struggle for even clean water, I see the blessings even in this. I am so thankful to Douglas and his ability to provide the insurance and step up majorally with our kids. And I'm grateful to work with a company that supports my well being and is being very understanding.

Admittedly there have been some.intensely sad moments in here, but I am making my best efforts today to remain grateful for what is happening FOR me and not focus on what is happening TO me. 

🙏☮️
9

Update 6: the blisters have increased and they are on every side and back so there's no way to lay comfortably. They started popping and it's incredibly painful, I am sadly back on morphine. Watching this closely as the original wound started as a blister :(. I'm struggling :( prayers, keep em coming. Positive vibes I need those too ❤️


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Update 7: Things have gotten worse the blisters are all opening and I'm in so much pain. I have pain up my spine and pressure in my head and ears now and an terrible migraine:( they said this can all be part of a severe case of red man's Just gave me dialaudid I'm hoping I can sleep through this . I have all lights off gonna rest and completely unplug will update when I can.

Update 8: I don't have any answers, but they have found a pain relief combo for me ❤️ thanks for all the prayers guys. Chin up!
Update 9: Experiencing very high levels of pain in my side and shoulder. It really hurts when i inhale the most. Blisters and wound are also very painful. I am being monitored.

Update 10: Andrea I owe you big time. She drove my mom Kate and Ronald down here to help Douglas and I with the kids. She helped me shower and brush and braid my hair and it's helped so mich. She's now on her way back home.

Update 11: it was a very long and painful evening. However I did have a bit of a turning point this afternoon. I saw a doctor with some answers. A lot of this is circling back to auto immune issues including psoriasis, but he believes I also have some other silent autoimmune issues. This is related to gut health, the thing I've been preaching for a few years. It's a part of the story. When I know.more I'll share. I'm still being monitored closely, have learned inhave a potentially life threatening med allergy, and some lifestyle adaptations I need to make. My pain is still high, as I am still suffering from blistering. Pain management is very important right now. Thank you everyone who is continuing to love and support me through this scary experience. Your calls, emails, texts, and gifts have truly made me feel lifted up and loved on. I still have some recovery ahead before I can go home, but I am truly thankful.

Update 12: things took a bad turn. Chest pain. Testing me for pulminary embolism. Please pray. ❤️had blood work, several new IV, CT with contrast, chest x-ray. My faith is strong that I'll be okay. my distress I called upon the LORD, And cried out to my God; He heard my voice from His temple, And my cry came before Him, even to His ears. Psalm 18:6.

Update 13: I know nothing except CT showed no blood clot!!!! ❤️

Update 14: can't believe there is a 14th update. What a drama queen 🙄. Things are going I don't really have anything new to report. My heart rate is staying pretty low (40s-50s) even with walking around. I've been trying to wean off all narcodic painmeds. Breathing is not bad, but labored. It just feel like it takes an effort. Honestly I feel crazy everytime.they ask how I am because the answer isn't bad but indont feel right either. I have been able to sleep more. I am saddened tomreport that Influenza A is in our home.right now (Doug and charley) which sadly puts me at risk too. I hate not.bejng there for them. I'm trying to be positive but I am so tired of being here . Here physically being the hospital, and also "here" in the way of feeling bad. I'd love to hear about some.good in your life

Update 15: I will.be released today. I don't feel well enough to be home, but i dont feel the hospital environment is the most healing anymore with all the the germs. I scan my body, and it's a lot like a left over battlefield. There was bravery, pain, blood, scars, and loss. My body hurts. It is black and blue and raised and red. The emotional scars -- the nightmares. They are just beginning. I hope one day Incan share my experience - but for now I am healing. Things could have gone otherwise, but I was given a chance at life. And I will embrace it with every fiber of my being. I know you want to know how I am -- the truth is... I hurt. I am struggling to breathe and keep my heart rate up, but I am not in danger. I survived the danger. I have home nurses coming tomorrow to help me continue recovery, and family around me. Liam only said three words, and it was everything to me. With a smile in his eyes, "oh, hi Mom." I will get back to messages and texts and everything as I can. I feel like this is a beginning of sorts. Love, Ashlee.

Update 16: the euphoria of being home was beautiful, but now I find myself in extreme amounts of pain and swelling. My options for pain relief are limited due to low heart rate. I have a home nurse who will be overseeing me over the next bit. The drug reaction continues to swell my upper body causing issues of its own. Prayers for relief would be appreciated. My poor body is swollen, painful to touch, and has temperature extremes. I'm trying tombe positive, it's just so hard. 

Update 17: since being home my body has become more red, intolerant, swollen. I am in extreme amounts of pain despite narcotics and benedryl. Reaction is unknown. Being sent to ER.

Update 18: admitted to hospital. Attempts at IV benedryl and steroids haven't been successful. Waiting for infectious disease doc in morning. Thank you for all your well.wishes they are received 

Update 19: I have no answers, but the hospital is doing everything they can to keep me comfortable. My white blood count was 26,500 which is high. I am currently on IV Prednisone, benedryl, pecid, blood clot prevention, and morphine. The morphine is keeping me pretty comfortable and I did sleep a few hours last night. Thankful for that.
Update 20 (11/24) :. Infection Disease doctor: not terribly concerned with wbc, because of steroid. Waiting on blood cultures. He wants to keep me on IV steroids, benedryl. Until clear. Calamine topically. Possibly immuno globlins. Keeping me until rash clears. He still thinks this is vancomycin not an infection but he is running 4 seperate blood cultures waiting to see what comes of that. He said maybe or maybe not by Thursday. He's not gonna discharge me until he feels confident

Update 21: 11/25ID doc just left: 1-3 more days of fluids and meds including steroids. Cancelling callamine while it helped dry out the rash it ultimately caused intense tightness and pain/itch. Notating increased rash on upper thighs hips. Continue steroid, pepcid, benedryl through IV. Discussed getting midline piccline due to poor vein quality is going to discuss with general doc. Gonna try new topical. Still having 9/10 pain scales treated with morphine

Update 23: No release for me today :(new IV going in doctor is putting in a piccline or midline this morning new antibiotics because he thinks there is a yeast rash as well as my rash spreads. Looking into some new meds topically for skin as everything this far burns. Maybe tomorrow, he's not sure. Depends on how the new IV goes. The pain is problematic, because my skin is peeling everywhere leaving new skin thin and exposed. I'm trying to extend out pain relief but at times it's not possible. Emotionally I'm struggling. It's a weird juxtaposition between feeling strong and brave and willing to match ahead and then in the next breath feeling sad, extremely lonely, and defeated. I've noticed that the pain is truly draining me mentally. I appreciate every call or text or message. I miss my family, I miss my doggie. I miss having a Christmas tree up by now, and being picked fun at for it. But no worries, I keep myself covered in my nutcracker blanket to hold on to holiday cheer 🎄

Update 24: change in plan! No PICC line (unless things change) I've been switched to all oral meds. If I can remain stable over next 24 hours, I may be able to go home for Thanksgiving with my family. Would you please join me in prayer and good vibes that a Thanksgiving miracle could happen. I certainly don't want to go home too soon -- so I'm not rushing it. But if I am well enough, I would be so grateful.

Update 25: I am home. 🙏 Pain is significant but improving daily. Thank you everyone. Long road of recovery ahead, but I am beyond thankful for life ❤️ I am restricted mostly due to weakness now, and that will just take time. I was the unlucky recipient of the Brayfield sickness so that sucks but it's temporary. Hopefully this will.be the last update on this thread. ❤️ I have a lot of changes ahead, and when it feels good to share I sure will ❤️