Update and Fear

Long time no see... or read. 😊 It's been roughly a year and a half since my last post. Crazy how time flies. 

You may want to reread my last post to get up to date on all things Jill. 

Here's a brief look into my health as of right now. I am currently taking a shit load of pills for a shit load of problems. Let's see...I have Lupus, Fibromyalgia, Diabetes, Lipedema, Hypothyroidism, high cholesterol, Spondylolisthesis, Osteoarthritis, Sleep Apnea...I'm sure there's more. 🤷‍♀️ Plus I am still fighting with Cushing's Syndrome only because I am taking a dose higher than needed of Hydrocortisone, which is a hormone replacement for Cortisol. My body is not responding well when I try to wean off. So...I am taking it really slow. In the meantime,  my body still has too much Cortisol which puts extra stress on my body internally. On a positive note...my blood sugar numbers are GREAT! Woohoo!! 

I think the biggest problem I have right now is mobility. My knees are crap and my legs are weighed down because of the Lipedema (find my blog post about that one 🙄). So, it is a struggle to do anything requiring walking or standing. My legs scream at me with just a little bit of walking. It's VERY frustrating! And it limits me SO much.

Enough about that stuff. Now...what's going on with my life that isn't health related.... 🤔 

My kids... 

Colby is on a church mission for 2 years (1 year already served) in Tanzania, Africa. Yes. AFRICA. And. AND! He had to learn Swahili!  Say whaat??😳 Honestly though, I think it suits his personality very well. The first few months were hell for him, but after that, his Swahili got better and he got a new companion which helped tremendously! So far, he's continued to have good companions. Let's pray he continues to. 🙏🤞

Brett is going to the University of Central Missouri working towards a Computer Science degree.  He's a computer nerd, just like his dad. Thank the Lord for that one! 🙌 In addition to that, he works part time at Papa Murphy's, and he has went down an entrepreneurial path of buying video games, figures and consoles on Ebay and FB Marketplace to turn around and resell them to make a profit. He's doing really well too! 

Sydney just graduated high school with lots of awards and a GPA of over 4.0. She currently has been looking for a job, but hasn't found one yet. She's  applied to a lot of places, but just hasn't had any luck. Hopefully she'll find something soon. 🤞 She starts college at the Community College next week, taking some "boring" classes in addition to a couple fun ones. Her passion is in theatre, backstage management mainly, so she has her eyes set on that right now. Althoooough... after watching the movie "Twisters", she's thinking storm chasing sounds pretty cool. 😳 Uhhhh. Please no. 

Now back to me... lol

Right now I'm feeling a little lost because my Stay at Home Mom job has completely changed since all my children are now out of high school and my youngest will be an ADULT next month. I can't believe I'm THAT old!! I'm currently taking a Veterinary Assistant course through the Community College Continuing Education program.  And let me just tell you how under used my brain has been over the last 20+ years. My memory and ability to retain information is practically non existent.  Which is incredibly frustrating!! 😤 I hope when it's over I will have learned at least a little something.  🤷‍♀️

The thing is, at this time in my life, this transition period, is extremely scary for me. I have so much fear to go out into the real world again. I have looked for jobs within the Veterinary field and talk myself out of applying because of all the limitations I have physically PLUS my ability to learn new things in a timely matter, is questionable. Last year, I worked at the front desk of an animal shelter for about 3 hours, and then quit because I completely panicked at how much computer stuff I had to learn. 

I never used to be this afraid of my abilities. My body is crap, my brain is crap...what do I have to offer any employer at this point. Those are the thoughts going through my head. I feel so unproductive right now. My kids are grown. I don't have a job. I'm not enjoying sewing right now so my business is on hold at the moment. Mike has been such a huge support though. He NEVER makes me feel bad and always encourages me to do whatever it is that interests me at the time. Regardless of my lack of the ability to retain information,  I am enjoying this Vet Assistant course and will continue to work on that. In the meantime,  I am working on my body to get it back in shape, and taking this class will hopefully reboot my brain to be able to learn new things again. 🙏🙏🙏 I WILL get myself back on track. I refuse to let fear hold me back. I just have to be compassionate with where I'm at right now. Do what I need to do to get myself back on track and get past this transition period. 

Is that it. 😏

 It's been awhile...

The past year and a half has been very difficult and challenging, but also rewarding and encouraging in some ways. 

Let's recap, shall we. 

In June of 2021, I was diagnosed with Cushing's Syndrome.  This is a condition that's caused by the overproduction of Cortisol, the "stress hormone". Cortisol is naturally distributed in the body during stressful situations or when the body is fighting something internally...it's what they call "fight or flight". If the body has extra Cortisol being distributed, it can begin to damage many other organ functions within the body...all over. 

I had a tumor on my Adrenal gland that was noticed about 8 years ago. I went to a specialist that didn't seemed worried. I unfortunately trusted him. 😡 Fast forward to 2021...I started researching my health problems and different diagnoses over the recent years and made a connection that pointed to Cushing's.  I switched doctor's and after a bunch of tests, Cushing's was confirmed. I KNEW there was something underlying that was being missed. 🤔

After looking back on my life and connecting the dots of all my health issues over the years, I have come to the conclusion that I have probably had Cushing's for over 20 years. TWENTY YEARS! 😳My body has been stuck in "fight or flight" causing all kinds of chaos and havoc within my body for 20 years. At least.  🥺 

So...next step. Adrenalectomy.  Take out the source that is throwing a party of Cortisol. "YOU GET CORTISOL! YOU GET CORTISOL!" (credit: Oprah) 👊 Every organ hit the payload of Cortisol. 💰🙄

The body has two adrenal glands, so my body will be fine with one. However...the other one has been sleeping on the job bc the "naughty" one is running the show. After surgery, it will be forced to wake up IF it still works. 

Unfortunately my body has been swimming in Cortisol for a REALLY long time, so...it DID NOT take kindly to getting it stripped away. 

Here's where I start my timeline for the last year and a half...roughly.  Get ready for the bumpy ride... 🎢

Sept 29, 2021: Adrenalectomy. Removal of the adrenal gland.  Post surgery recovery: A lot of pain. A lot.  😫

Less than a week later: Brett tests positive for Covid. He tries to fight it at home, but gets worse every day. Mike and Colby do everything possible to help him. (This period of time has created PTSD for Colby from seeing his twin in this condition). I was out of commission due to the surgery and Syd was quarantined for exposure from someone else. After several days, he was admitted into the hospital for 5 days. 

Mid October:  I test positive for Covid and get a 5 night stay in the hospital. Yippee. While still recovering from my surgery.  Lots of pain. Lots of STUPID I.V. nightmares. 😤😡🤬

Fun fact💡: I got admitted into the SAME room that Brett stayed in. He came home and a couple days later I went in. AND...it was my FIRST ambulance ride. ☺️ Mark the calendar ✔️

During the next few months: Ready for this. *deep breath*  Several ER visits, my 2nd ambulance ride ✔️✔️, blood sugar drop to the 40's and again to the 60's on a different occasion, a couple more hospital stays, uncontrollable body spasms, tested positive for Mono, tested positive for Lupus and Fibromyalgia, a pinched nerve that was excruciating during every body spasm (MULTIPLE times a day), nervous breakdowns with uncontrollable crying, chronic diarrhea for several months, vomiting all the time, constant nausea....

I'm sure there's more, but... that's all I can remember.  There were many very DARK days. Mike wasn't sure I'd pull through. That's how bad I was. 

I had seen just about every specialist to figure out what was going on. I kept in constant contact with my Endocrinologist (Cushing's doctor) to keep him in the loop in case it was Cortisol withdrawal related. Yes, that is truly a thing. 💯 I read that post surgery recovery is comparable to herion withdrawal. I'm not kidding. I've never taken herion, but my recovery was...no joke. He was certain though that I was on track with my hormone replacement dose. 

I finally went to the Neurologist to talk about the spasms.  Those spasms were #1 💯 the WORST part of the recovery. I dreaded waking up bc the mornings were the worst. All she said was that they were stress related. Really. 🤨

💡 Light. Bulb. 💡

What did I JUST have ripped out of my body?! Uhhh...the STRESS hormone lollapalooza tsunami. That's right. Cortisol.  THE stress whisperer. Apparently my body is not coping with stress well. At all. 

I messaged my Endocrinologist and he was amazed bc spasms have never been a symptom after this kind of surgery. Yep. Leave it to me to be the exception. 🙄😏 Anyway...he said to increase my dose from 40 to 60 or 80. So, of course I chose 80. Duh. LOAD ME UP. 

And wouldn't you know...a few days later I felt like a new person! It took HOW many months to figure this out?? I stayed on 80 for a bit, then tried 60, then back to 40. I found my sweet spot at 60. I am STILL on 60 bc of some of my OTHER diagnoses that are causing my body to require legit more Cortisol. 

Fast forward a bit. 

April-ish 2022: I'm feeling great! The best I have in YEARS! I start working out and seeing a Physical Therapist for some pool exercise.  This was helping me tremendously. I develop a good, trusting and open relationship with my PT. He helps me work out some tight muscles that are causing pain...which hurt like a Mother 🤬, but it was necessary.  One day he decided to channel his inner Chiropractor (he is NOT licenced to do that) and adjust my middle back (it WAS very tight). He pushed down on my spine and it was THE most excruciating pain I have EVER felt. 🤬🤬🤬🤬🤬 Worse than ANY surgery recovery.  💯💯

It took at least three weeks to get back into a position where I could move again without wincing. He caused Costochondritis, fancy word for: inflammation of the cartilage in between ALL my ribs. ALL my ribs. In addition to a Fibromyalgia flare up. 

So...that put me out of commission and off my workout schedule, and I have struggled since to get the energy I had before that happened. 

The next few months were pretty good.  I was getting back the motivation to do things and complete projects.  

Let me just say that again. COMPLETE projects. THAT is huge for me. *queue pat on the back* 👏 

October-ish 2022: Massive headaches, chronic knee pain and inflammed chronic foot pain...resulting in an MRI of my head and one of my foot. 

Foot: Sinus Tarsi Syndrome aka chronic inflammation of the point where my ankle and another bone meet on the top outside part of my foot. Constant burning pain and inability to move my foot in certain directions without pain. Also....Plantar Fasciitis, arthritis and a cyst...all on my right foot. I had to get custom orthotics to correct my step.  It still causes a lot of pain but it's slowly getting better. 

Knees: Very bad arthritis and the left knee is bone on bone at one point. I got a gel injection series in my left knee that is supposed to be better than a cortisone shot. Well....it wasn't. 😡 $450 later, my knee hurts WORSE!! P.I.S.S.E.D. That's what I was. Pissed.  So...I found a new doctor (I was thinking about it before this) and got a cortisone shot in each knee (MUCH better! 👌) and was told I need new knees. But...I have to lose more weight before I do that. Until then, my knees are tolerable with cortisone shots. 

Head: Migraines. Caused by anxiety and stress. MRI: shows hardening of some arteries due to high cholesterol and diabetes. Nothing much to really worry about, just keep those numbers in control to keep it from progressing.  My migraines only last for 15-30 minutes at a time and only occur for a short period of time and then they're gone for awhile. It's weird. 

December 2022: I had my blood retested to confirm that the Lupus and Fibromyalgia diagnosis wasn't due to my body being so jacked up. I honestly didn't think I had it, so I stopped taking the Lupus medication in November for about 6 weeks. I noticed though, after about a week of not taking it, my body hurt ALL over and I was really tired. But I still held out till my appointment.  I got the results back and the number that confirms the diagnosis doubled from what it was originally in January. So...I definitely have it. 😔 Back on the meds and I'm feeling much better in the aching body sense. OH...but I was told that I'm borderline kidney dysfunction though. So...there's that. 🤷‍♀️

January 2023: Blood in my urine. Yep. We're talking brown pee. It happened once one day and then again, several times, 2 days later. No UTI. So, now I'm going to see my Urologist. The same one who did the Adrenalectomy and has also been monitoring a cyst on my kidney.  🤦‍♀️ He might have to do a Cystoscopy to look into my bladder. NOT looking forward to that.  He'll have to stick a scope up in there and fill it with saline to get a good look at everything.  All I can say is...once that scope gets removed...he better be wearing a rain poncho bc that saline will be tsunami-ing all over him. 🌊 You're welcome for the visual. 😉😉

Also this month: I had a check up with my Endocrinologist. The goal after my Adrenalectomy was to eventually wean off the 60mg of Hydrocortisone, aka Cortisol replacement that I'm taking, to a dose that is natural for my body in order to force my other inactive adrenal gland to start functioning properly.  But...my Lupus in uncontrolled right now which means my body is full of inflammation. Everywhere. Because of this, my body needs the extra Cortisol, so weaning off right now sends me into a downward spiral. I DO NOT want that. The spasms start again and the anxiety skyrockets. 

He did,  however, put me on a new diabetic medication called Mounlago, which is known to produce great weight loss results. 🤞🤞

To sum it all up: I am still working on recovery from all the damage Cushing's did to my body. ALL the damage. Everywhere.  Lots of damage. 😟😣 

I don't deal with stress well and my anxiety is a big issue right now. I have to remind myself to take it easy and not overcrowd my plate. I get physically ill when I'm overwhelmed and I just can't do that right now. I have to allow my body to heal and work on rebuilding what's been damaged. I have to focus on getting my Lupus under control, so my body doesn't have to fight so much inflammation.  

I feel like I'm on the other/positive side of things finally and I'm on the right track. I take it day by day and roll with the punches. I try to stay positive and be patient with myself and take care of me. ❤️❤️  

Having strength.

 Who I am today is not who I wanted to be. 

My daughter sees me as lazy in her eyes, and she's right. She sees her mom not doing the typical "mom" things a stay at home mom should do. She sees me sitting in my chair and always asking for help. This breaks my heart. 

My health started to get in the way of my normal activities when Syd was around 8 years old, so she doesn't remember much other than me getting more and more tired. I was 400 lbs by then and food had control over me. It started when I was a child. I come from a family (my dad's side) that loved food, especially sweets. 

A little backstory...

I am an only child, so my parents didn't have to spend all their earnings on providing for a big family. 

This allowed us to do many things as I was growing up. We traveled a lot, it wasn't always far or exotic but it created wonderful memories and lots of good food. And, we went to sporting events all the time, I loved the atmosphere and of course, the food. We went to concerts a lot because I shared the same love for music as my dad and quite a few artists and bands as well. Being an only child is the best. I get complete undivided attention from my parents. 

One thing I loved growing up, was that we ate out a lot. It's something that I still love to do. I noticed, after having kids and meeting other moms that a lot of families eat at home all the time. That just seems so exhausting in my eyes.  Plus, sometimes, whoever is cooking won't be able to sit with the family the whole time they eat.  When we ate out my parents and I got to sit and visit the whole time without worrying about the kitchen.

Current times...

As an adult, I have the same feelings about eating out. I enjoy not being responsible for cooking or clean up AND we could all order what we wanted.  I am just awestruck by families that eat home every night. I know that finances play a big role in that and I don't knock it at all. I admire it. I prefer the easy way in most things and eating out is no different.  

Over the years, I have enjoyed home cooked meals more. My kids are older so we can experiment a little more. The one thing that I hate about eating at home is how tedious and time consuming it is. Plus, I'd hear stories of how my grandma cooked, so it set the bar pretty high. And I thought I had to be the same, and THAT was very intimidating and more than I could handle. My hat's off to her and all the men/women that did and do that daily for their family. 

I cooking at home is a weakness of mine. I have felt a weight on my shoulders to be "that" kind of mom.  The one who makes fabulous meals every night. I've always wanted the kids to say "My mom is the best cook!". I mean, I do ok, when I ACTUALLY  cook. Lol.  The problem I have besides not liking to cook 😉 is all the prep it involves...planning and shopping. I have ADD so focusing long enough to make this happen, routinely, was very difficult.  Mainly because I always wanted to fix something different each time. So everytime I planned for the week, I was researching all over again, which took all my mental energy. So... I ended up getting fast food a lot. This was not healthy for me or my family. 

Now...let's get back to my daughter and her view of me currently. A lot of my choices have led me to where I am today. I struggle a lot with that because FOOD is one of the main reasons I'm the way that I am. Granted, I have found out a lot about my health this year that has played a role in it but now my youngest is 15 years old. She has seen me miserable physically and sometimes emotionally her whole life. I wish I knew then what I know now. Quote, unquote, my dad. 

I have struggled with overeating and eating crap for a really long time.  About 5 years ago, I found out that I have Lipedema.  This is a condition where my body processes fat abnormally and stores it...diet and exercise do not help. Due to this, my legs and butt are ridiculously large and cause major issues and pain in a lot of ways. My normal way of eating was exaggerated and sped up due to the effects of this disease. 

This year I found out that I had Cushing's Syndrome.  This is another disease causing weight gain. It also affects the brain and all the hormones that control hunger, motivation and happiness. In addition to screwing up my metabolism and how my body processes sugar and salt. Thus, contributing to the already growing problem. 

The past 6 months have been especially hard on me. My body is weak and hurts all the time. The last thing I want to do is move. My brain is not functioning well, staying focused and remembering things is beyond difficult. The Cushing's may have been surgically repaired but the effects of it are still there, along with a few other newly discovered problems.  It'll take awhile to get back to a better functioning person. I know this, but I don't like it. 

My husband.  The absolute best man there is. He is my hero. Because of my condition, he has taken on so much extra. Thankfully we have grown kids, but Syd can't drive yet, so Mike is a chauffeur for her busy schedule.  Plus he takes care of anything that requires any physical strength or endurance. And he doesn't complain. He just smiles and has so much expression of love in his face. 

The guilt I feel is awful. I see him taking on so much, between his normal job, church callings, helping out family and friends, keeping the house picked up, fixing everything that keeps breaking down and whatever else comes his way. All while I just sit there. Ugh. The guilt. I try to help him when I can especially on good days. There are so many different things going on with my body that it's a mystery right now how I'll feel each day, and how long a good day will last. It's very frustrating.  

Some of my health problems have caused me to be very sensitive to food. Which is new territory for me. I don't like it, BUT...it is helping me want different and healthier food. Which is great!  I know I'm inconsistent at best with meal planning and eating home. I've asked for help in the past but my controlling tendencies have gotten in the way. 

I have asked Mike again to help me with this. It killed me to ask bc he already has too much on his plate. But I knew he would take this on and get it done and be consistent.  I asked him to take control of EVERYTHING involving food and I promised not to get in the way. I wanted NO control in this. That next minute he was on his phone researching different Apps to help him store recipes, plan meals, take inventory of our kitchen and make grocery lists. This was one month ago and it has been so freeing to not have this responsibility anymore. What he's done is perfect. He got the kids involved in planning, cooking and rating meals. 

With this set up, I am hopeful and praying that my food struggles won't be such a problem anymore. As my mind heals and the hormones get back in balance and my body regains strength, I will be able to show Sydney that I'm not lazy. I am very independent and take on tough projects on my own. I am a strong woman who gets things done.