Tuesday, January 17, 2023

Is that it. ๐Ÿ˜

 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. ๐Ÿ˜ก 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. ๐Ÿค”

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! ๐Ÿ˜ณMy body has been stuck in "fight or flight" causing all kinds of chaos and havoc within my body for 20 years. At least.  ๐Ÿฅบ 

So...next step. Adrenalectomy.  Take out the source that is throwing a party of Cortisol. "YOU GET CORTISOL! YOU GET CORTISOL!" (credit: Oprah) ๐Ÿ‘Š Every organ hit the payload of Cortisol. ๐Ÿ’ฐ๐Ÿ™„

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... ๐ŸŽข

Sept 29, 2021: Adrenalectomy. Removal of the adrenal gland.  Post surgery recovery: A lot of pain. A lot.  ๐Ÿ˜ซ

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. ๐Ÿ˜ค๐Ÿ˜ก๐Ÿคฌ

Fun fact๐Ÿ’ก: 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. ๐Ÿ’ฏ 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 ๐Ÿ’ฏ 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. ๐Ÿคจ

๐Ÿ’ก Light. Bulb. ๐Ÿ’ก

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. ๐Ÿ™„๐Ÿ˜ 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 ๐Ÿคฌ, 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. ๐Ÿคฌ๐Ÿคฌ๐Ÿคฌ๐Ÿคฌ๐Ÿคฌ Worse than ANY surgery recovery.  ๐Ÿ’ฏ๐Ÿ’ฏ

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* ๐Ÿ‘ 

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. ๐Ÿ˜ก $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! ๐Ÿ‘Œ) 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. ๐Ÿ˜” 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. ๐Ÿคท‍♀️

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.  ๐Ÿคฆ‍♀️ 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. ๐ŸŒŠ You're welcome for the visual. ๐Ÿ˜‰๐Ÿ˜‰

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. ๐Ÿคž๐Ÿคž

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. ๐Ÿ˜Ÿ๐Ÿ˜ฃ 

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. ❤️❤️  

Tuesday, January 11, 2022

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 ๐Ÿ˜‰ 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. 



Sunday, September 26, 2021

Fixing a Stressed Out Body

 It's been almost a year since my last post on my blog, and SO much has happened during that time. 

Last year at this time I was in quarantine contemplating life and my choices, trying to reevaluate what I need to do to improve my health. I was speaking with a therapist for awhile and that helped me see certain things from a different perspective.  I stepped back from my blog and my Facebook group to focus on my journey without the looming worry of acceptance and input of outside sources.  That was ok for awhile, but I missed my friends and the support. I need that encouragement.  

After quarantine I looked into getting Lipedema Liposuction on my lower body to get rid of the excess fat that won't budge with diet and exercise due to the Lipedema disease. I thought by doing this it would make me feel better and get around easier and give my body a reboot to start over without stubborn fat literally and figuratively weighing me down. The surgeon advised me to consult a Functional Medicine doctor to do extensive testing to help figure out why I have so many different health issues. I did just that. Initially I was 100% on board and excited to see what all the testing would uncover. It was pricey but worth it if I get answers. I started a Paleo detox and did what they directed me to do. That was Phase 1. After about a month, results came in and it was time to decide if I wanted to pursue Phase 2...even more $$$$. I was becoming uneasy with moving forward bc it felt sketchy with empty promises. So we declined going forward because per my Primary doctor's advise, all the results were manageable without spending thousands of dollars with this other doctor. 

Ok. So here we are AGAIN. Same issues as before. But, NOW my moods were very erratic and all over the place. I KNEW my hormones were screwed up. I researched new Endocrinologists bc my previous one was a dipshit and very unimpressive. He was quite aware of my 4cm (size of a lime) Adrenal tumor; as well as, my Diabetes and various other issues that should raise red flags when grouped together. Also, I made it known that I suspected that my Cortisol has been out of whack since my twenties. PLUS, to a doctor, they should recognize that I exhibit many symptoms that would suggest my Cortisol level needed to be tested more thoroughly, but he did not do that. He dismissed the tumor being problematic because it was noncancerous in appearance on the CT-Scan; eventhough, it was at a size that should've been removed.  He did a basic blood panel that didn't show numbers that he thought were off. Although I was never called by anyone to go over those results in detail. I learned from my current Endocrinologist that Cortisol fluctuates drastically throughout the day, that's why blood, urine and saliva are all necessary to confirm a problem.  It's a hard and frustrating diagnosis to make. Each test is done at a certain time with strict instructions to get the most accurate reading. I found this out a few months ago. My old Endocrinologist did ONE blood test. That's it! ONE. And sent me on my way. ๐Ÿคฌ๐Ÿ˜ก

Moving on...

Fast forward FIVE years!!! This DAMN Adrenal tumor has been a worry on my mind since I found out about it. As I researched the function of the Adrenals, it was becoming more and more apparent that this tumor is not just a cute little blob there to add a little bling ๐Ÿ’Ž in order to make it feel more attractive.  There was actually something more going on. 

So... I did what any neurotic and determined woman would do. I went on an Adrenal tumor Google search frenzy. A journey down the WebMD rabbit hole, if you will.  Which usually ended in a diagnosis that had me knocking on Death's door. ๐Ÿคท‍♀️ But THEN I came across Cushing's Syndrome. ๐Ÿ’ก๐Ÿ’ก OH MY GOODNESS. This condition had Jill written all over it! Could this be the answer??? 

Cushing's Syndrome "Hypercortisolism" aka the silent predator that causes havoc on everything within the body. 

MY BODY. FOR 20 YEARS. 

Weight gain ✔

Diabetes and uncontrolled blood sugar ✔

Fatigue ✔

High Blood Pressure ✔

Muscle weakness and Osteoarthritis ✔

Memory and Concentration issues ✔

Anxiety and Depression ✔

Thin skin and easy bruising ✔

Overthinking and low tolerance to stress ✔

Water retention, salt & chocolate cravings ✔

Vertigo and blurred vision ✔

Insomnia and sleep problems ✔

Fat hump between the shoulders & stretch marks ✔

Round and red face, facial hair, acne ✔

Cognitive difficulties and Emotional instability ✔

๐Ÿค” I think that's it. Seriously. I'm a mess.

Most of these issues I've dealt with for about 20 years. TWENTY YEARS of Cortisol running rampant causing my body to be in stress mode 24/7. Numerous visits to various doctors treating me for each of these conditions individually.  All of them staring at a morbidly obese woman and using that as their answer to my problems.  I don't deny that my habits and food choices accelerated and magnified each of these conditions. But I was also working with a body that was working against me in so many ways. It's like walking straight into 40 mph winds...you'll make very slow progress moving forward, you'll get knocked down a lot and you'll get pushed back if you aren't strong enough to withstand the pressure. 

It's so frustrating to look back at all those years of my body slowly breaking down, blaming myself for not being strong enough to resist temptation. Overeating to medicate my emotions.  Feeling embarrassed because I can't remember things and my attention span is lacking to say the least. I have sat on the sidelines of so many activities bc I wasn't physically able to do them. My kids have grown up with a mom that has so much more to offer but my body has been incapable of showing them that. It just, makes me sad. And furious too. I am so annoyed at my previous Endocrinologist.  But... what's done is done. I can't dwell on the past. I need to focus on the future and the new possibilities. 

I'm getting surgery this week. An Adrenalectomy to remove my right Adrenal Gland. Right now, my left Adrenal Gland is "asleep" because the right one is overproducing almost everything.  After my surgery, I will need hormone replacements temporarily until the remaining gland is functioning properly. 

I watched a seminar given by an Endocrine surgeon in regards to the recovery of patients after getting an Adrenalectomy due to Cushing's Syndrome. She compared the recovery to a herion withdrawal. ๐Ÿ˜”๐Ÿฅบ My body will go from having too much Cortisol "the stress hormone" to none in a matter of 3 hours. Not to mention, I believe it's been like that for 20 years. Almost half my life. My body could quite possibly go into shock. I'll get the hormone replacements but I'm not sure how fast they'll react and how long it'll take to get the proper dose. 

She also discussed the rate of improvement on all the symptoms involved. She said that every patient's recovery is different just as every patient's cocktail of symptoms is different.  The blood sugar, HBP will improve sooner, weight loss is usual but calorie intake still needs to be watched. The moods and "brain stuff" will be gradual and my loved ones will probably notice that before I do. The muscle weakness will be a slower turnaround because that will need to be built back up. To sum it up, it's not an immediate fix after surgery. It'll take months to years to get things functioning normally. 

I am beyond relieved that I was able to identify what the root of all my problems is. I don't feel crazy or like I'm making up excuses when I say that there's something more going on. There's something deeper than my food addictions and behaviors that's causing my rapidly declining health.

I am so hopeful. I am looking forward to feeling the life return back to my body and mind. I am praying that my surgery and recovery will go well and without surprises or complications.  This has been a long time coming.