The Madness of Being Sane

12/01/2023

Working on a new post. In the meantime read this article. The way women are treated by the medical community is unbelievable. I’m starting year for of my hell. I will only have female doctors from now on.

https://www.huffpost.com/entry/doctor-misdiagnosis-endometriosis-ovarian-cancer_n_6193ff51e4b005197af7d92d?d_id=5368745&ref=bffbhuffpost&ncid_tag=fcbklnkushpmg00000063&utm_medium=Social&utm_source=Facebook&utm_campaign=us_main&fbclid=IwAR3jwiUikiv9H45P-mPZKrHLHwcGRzbjttKFwwbdd4ZtLLWOrCEhNZvKE8A

"I sat through appointment after appointment, having my pain dismissed, being told I was 'depressed,' being told I had 'IBS,' just as they had told Tori."

19/12/2022

New Rule. You laugh or ridicule what I’m going through, it’s an automatic block. No warning. Cruel ass jerks.

15/12/2022

Sorry for the delay in this post. My life has been nuts the last few weeks. This post contains the final part of 2020 & 2021. I didn’t take much notes in 2021, but once I catch up to the current time, I’ll go back and have separate posts on those.

Still in 2021, My legs continued to tense and relax all on their own. I have to admit it was weird. My entire body would stiffen However it didn’t hurt so I wasn’t worried about it. I started to lose my appetite but it kept coming & going.

One night I je**ed awake suddenly, due to a lot of electrical shocks going through my limbs. I was slowly becoming more and more miserable.

Toward the end of 2020, I got a new doctor at this large practice. I can’t remember if it was my new GP or the nice neurologist who was helping me whom came up with the possible diagnosis #2 which is something called Myasthenia gravis.
The following is text taken from the Mayo Clinic WebsiteMayo clinic:

Myasthenia gravis (my-us-THEE-nee-uh GRAY-vis) is characterized by weakness and rapid fatigue of any of the muscles under your voluntary control. It's caused by a breakdown in the normal communication between nerves and muscles.
There's no cure for myasthenia gravis, but treatment can help relieve signs and symptoms, such as weakness of arm or leg muscles, double vision, drooping eyelids, and difficulties with speech, chewing, swallowing and breathing.

And of course it’s another disappointment. It was ruled out by a blood test I believe. Meanwhile, my confusion continued to get worse. Then I developed puffy fingers between the knuckles. My Rheumatologist said it was from the Lyrica. I’ve been off the Lyrica for four months (in 2022). Guess what? The fingers are still puffy.

In 2021, The coordination in my hands continues to get worse. Meanwhile my periods kept coming and going when ever it felt like it. And I slowly started to lose weight and no one could figure out why. I went to my gynecologist for the period issue and after an ultrasound they thought I had endometriosis. After discussing my options I opted for the hysterectomy as my husband had kept blowing off a vasectomy. In August of 2021 I had a hysterectomy, it was an outpatient operation and it’s nuts that they would do that. However it was mid Covid. Needless to say it’s one hell of an operation but I am digressing.

Earlier in 2021 I decided for myself that I wasn’t safe to drive, so I stopped driving and would only drive to my therapists office. Most of my doctors didn’t seem interested in taking charge of my issues. In my late teens I was diagnosed with some long named
(abbreviated as CMV) virus that stays in your system forever. A lot of those symptoms seemed to match the symptoms I was experiencing at the end of 2021. So off I went to yet another doctor, this one an infectious disease doctor. And of course, it was ruled out. My patience is definitively starting to wear out.

Next Up: 2022

03/12/2022

This post was supposed to be the next post in my health journey. But then Thursday happened. I am changing the name of my former coworker to protect her. I will call her Danielle.

I was online on Thursday and in my feed was a post from another former coworker saying that Danielle had passed away. But I’m going to back up a bit.

When I had joined the organization where I worked for 19 years, Danielle was one of the first people whom I became friendly with. She was a force to be reckoned with. Danielle was the Executive Assistant to the President of the organization. She somehow knew everyone who had ever worked there and every person she had been in contact there. It was utterly amazing and I really looked up to her. Danielle was one hell of an Executive Assistant.

Somewhere between 6-8 years after I started working there, out of the blue, Danielle was fired. I was shocked. It wasn’t until about 6 to 9 months later did I learned her secret. Danielle was an alcoholic. I was stunned. And at first I didn’t believe it. But slowly I remember little things that didn’t make much sense then but then did. I had a lot of sympathy for her as my father was a functioning alcoholic.

Sometime in the last week she died. I read about it on another coworkers page. It was a blow I wasn’t expecting. I’m grieving but I wasn’t close to her. I’m shocked at how hurt I am by her death. And yes, her death was directly related to alcohol abuse. However, that is all I know. And honestly, I did not know her drinking problem was this severe.

I had kept in touch with her via Facebook. I will miss her stories of her Italian Motorcycle man who was her neighbor. I will miss her wit, her sensitivity, her talent and love of baseball.

Good bye Danielle. I will miss you more than you could ever have known.

20/11/2022

Jason David Frank -- one of the original "Power Rangers" -- has died ... TMZ has learned.

19/11/2022

So to continue… and a reminder we are back in 2020.

2020 was the first time I had this weird stiffening of all the muscles in my muscles. I couldn’t control it until I realize it was happening. I was sent to a Neurologist at a local hospital for further testing. It was decided I was not having seizures.

Also in 2020, my feet started hurting every time I walked. Annoying as my home is mostly hard wood floors. Then I was getting burning patches of skin. I then developed numbness on the back of my legs. If I sit on something, I can’t tell. As of November 2023 the numbness is still there. And from what I’ve read, nerve damage is not reversible.

The first possibility of a diagnosis was MS. I was sent to Georgetown University Hospital in Washington DC. The first doctor I saw there is Jackass #3. I was initially forced to tell my story with a first year medical student who was confused within 1 minute. It took me an hour to tell him everything and he was clearly very confused still. Then came the doctor. I have never been so badly treated as I was by this raging as***le. When he came in he was wearing a custom made, probably Italian suit and had this longish hair. He looked me up and down and said I didn’t have ms. He accused me of faking the need of a wheelchair, saying I walked in there therefore I didn’t need it. Remember I need it for over certain amounts which can change daily. In anycase, I was so humiliated I started crying. He ignored me and read on his computer until I pulled it together. He authorized another mri, which I had sent to another doctor. I did complain to the state medical board but they found no evidence. As****es.

I tried another doctor at Georgetown and he just told me to stop all of my medications and also accused me of faking the need for a wheelchair. I didn’t even bother trying to complain to the medical association this time.

2020 plugs along and I started having problems by writing by hand. This eventually improved when I started doing hand physical therapy exercises. I also lost my job of 19 years which definitely depressed me. I also started wetting the bed at night. While I was sleeping I also will fling arms and legs in any direction. I also had this event where I je**ed awake and my head was flung back and I felt like I had been punched in my face. My life just continues to get odd.

Next Up: More 2020 & 2021

08/11/2022

In 2019 I had my first typical migraine. At this point I was still working. I was at my desk and people were in their offices. All of a sudden, out of nowhere I get this unbelievably sharp pain in my head. I put my head down on my desk until it started easing. People were asking if I was ok. I stood up and was talking to my co workers as the pain was easing. All of a sudden my mouth started watering. And adults know what that means. Run, do not pass go, run to the bathroom where I threw up.

Next up came my left arm acting odd, and not hanging correctly. Followed by my spelling getting bad. I used to be able to spell very well. So it was horrifying for me to constantly not being able to spell.

One morning in 2019, I woke up and found myself sleeping on my stomach which I haven’t done in years. My arms were out in front of me. My fingers were retracted, much like a cats paw does. Not one doctor seemed to worried about it but it still bothers me in that it isn’t something normal.

Some days, my arms and legs hurt a lot. It felt like hammers were hitting my bones, and yes it really bloody hurt.

Toward the end of 2019 I started getting more confused and I could tell it was starting to affect my work. My typing skills were going downhill as well. I was starting having to take more and more time off of work due to the confusion and extreme fatigue.

I then had a neck MRI to check for lesions and other things. Again nothing was found. Of course.

Just for fun I’ve been counting the number of medical appointments. This includes: Therapy, dental and anything medically related. The count is 90. Just wait until you see 2020 & 2021!!

In 2020 I started developing body twitches. Limbs get flung in my sleep and other random things like that. I also developed weird tastes in my mouth. None of which could the doctors could explain.

And now we get to Jackass #2 who is not a doctor this time. She’s a tech of some sort. I was getting a retest of my nerves. For those of you who don’t know, this test is fu***ng awful. You get electrical shocks in your limbs. The pain is excruciating. Once it had started, I tried very hard not to cry. But the pain was unbearable. I stared at the wall and tears started falling. The fu***ng tech LAUGHED at me. I’ve never been more humiliated. The next day I called the doctors office and talked to the office manager. They were beyond shocked. The neurologist found out to. A year or two later she did another test on me. We both knew who the other was and she was very quiet. Ugh.

Next up: More humiliations by doctors and other 2020 stuff.

05/11/2022

Not long after getting Luna, my symptoms started expanding. The first of these new symptoms was mixing up words. As an example we had gone to San Diego for vacation (I’ll talk about this trip in a future post) . I think we were at the Safari park when we were in a tram of some sort and were with some random people. We were talking about the animals and I referred to a hippopotamus as a rhinoceros. Some red neck was in the middle of correcting me in a rude way when my hubby jumped in and saved me from humiliation explaining I knew what the animal was I just used the wrong word. I love my hubby!

Next up, was I became more and more clumsy. I’ve always been clumsy anyways, but it became ridiculous. I would knock anything and everything off a table. I was embarrassed that my body was betraying me.

After that trip and after much thinking, I thought I might have fibromyalgia. So I went to my doctors practice where they had a rheumatologist. After many tests, the doctor determined that I had Fibromyalgia and started me on Gabapenton. However, it made me extremely sleepy and so I was switched to Lyrica. 2 or 3 months later the rheumatologist told me she was leaving the practice. I didn’t care much. So I found a great place with a good doctor who could get signed up with medical marajuana. At my first visit I found out that my previous doctor had moved to this practice . Honestly I was flabbergasted, but it wasn’t a big deal as I like this doctor better than her.

So then the next few symptoms were: getting electrical shocks in my legs. I must say that these are not very fun and hurt like hell. Following that came the muscle cramps in my thighs. Fortunately, you can get cbd ointment that worked wonders. Meanwhile, I was slowly getting more and more tired. At some point in 2018, I discovered by accident that wearing compression socks really help the pains and electrical pain in my legs.

Toward the beginning of 2019 I had an episode where my leg muscles felt like they were being played like harp strings. Talking about uncomfortable and painful! Then my left arm started going numb. In the middle of the year, I started sporadically getting confused. This isn’t a good thing when you reviewed federal contracts for a living. Then I had my first nerve test which was painful but uneventful.

At one point during 2018 or 2019, we were at the pool. I was getting out of the pool and was holding the railing. I was stepping on the built in steps in the pool. As I stepped onto the cement out of the water, my legs gave out. Because I was holding on the railing I didn’t completely fall. But I was really embarrassed though I doubt anyone noticed.

2019 was also when I had the first MRI of my brain to check for lesions which would have meant I had Multiple Sclerosis but nothing like that was found.

Up next: the rest of 2019 and part of 2020.

28/10/2022

So here I go with the beginnings of my current health issues. I again have to give some basics so you all can truely understand.

Before I had to stop working, I worked at an NGO in the metropolitan dc area for 19 years. As I mentioned in the previous post, I’ve basically been depressed since birth. And in my early 40s I was going through another bad patch of it. I grew up with having cats. But once my husband and I were down to 2 cats we decided to get a dog from a place in Texas. Basically we were scammed into what we thought was an official emotional support dog. We paid a bunch of money and didnt get many details other it was a 4 or 5 year old grey/black Miniature Schnauzer. Once we accepted the dog and read through his packed they then said he was six. Once we had our vet check him out, the vet determined Max was actually 9. The first year was an adjustment as I’d never had a dog. But I did the work and we loved him. A lot. After the first year, I slowly started getting lower back pain.

In early 2018 I noticed the tip of my tongue was numb. My dentist didn’t seem worried so I didn’t think much of it. Around the same time, I noticed I kept dropping my phone when I was holding it. Also at the same time, I was slowly discovering that I couldn’t walk as far as I used to with Max. Then we realized that Max was getting sick a lot and we took him do the vet where we learned he had become diabetic. I was devastated but we didn’t give up and so we learned to give him his insulin.

Again at the same time, my lower back pain was becoming worse so I went to an orthopedic doctor (Jackass #1) for my lower back. We did X-rays, MRI’s, cat scans and steroid injections. Nothing could be found. So the doctor then said to try physical therapy. For 3-4 months I went twice a week and religiously did my exercises. It didn’t get better. Meanwhile we still couldn’t get Maxi’s diabetes under control. Then I went back to jackass #1 and he said he didn’t know what to do. I asked him why I couldn’t walk far without excruciating pain. He just shrugged. I left furious and refocused on trying to save Max.

In June of 2018 we kept having to take Max to this emergency vet. They tried hard to save him. But on the last time we were there we finally ran out of money and I had to make the horrible decision to let him go. I was destroyed. The emergency vets had an amazing room for goodbyes. We laid Max down and I curled up around him and sobbed my heart out. Then I told the vet to do it and within minutes my beautiful boy was gone. I cried on him some more before letting them take him. And now 4 1/2 years later as I write this I’m sobbing. And I told my hubby why and now he’s crying too.

I was so upset I didn’t get out of bed for two straight days. On the second day in bed I started to look for other dogs. It was the only way I could survive. On the 3rd day I got up and carried on. Max had died on a Sunday. For two weeks I applied over and over for dogs, I even saved their pictures. Two weeks to the day after I lost Max, my hubby, my son and I went to a rescues open house in Virginia. I really loved a corgi but he had kennel cough so in order to prevent another heartbreak, we said no. As we we were thinking about leaving my husband pointed out a small and quiet dog that looks like but isn’t a Yorkie. She looked unhappy and unhealthy. But when I held her in my arms boom I knew she was the one. Her name is Luna Willow.

Then things got weird. Stay tuned.

25/10/2022

I’m going to start with some background on my health issues. I was born depressed. Both of my parents knew very early I was depressed. This was before doctors realized that children can be depressed.

My first su***de attempt was in my teens. There was maybe 5-10 attempts in my teens but most of them weren’t close to being a serious attempt.- meaning I didn’t take nearly enough pills to do anything. When I was 15 I was hospitalized in a youth psychiatric facility. I assume there was a su***de attempt but I don’t remember. There were two serious attempts. One was when I was about 18. I took a large amount of pills at a pagan festival. My parents do not know about that attempt. A few years later, I again took a large amount of pills somewhere, drove home and went to sleep. In the morning my mom woke me up and I was so out of it she knew what happened. I ended up in intensive care for a few days. I have not attempted su***de again. Though I do think about it a lot. Currently I don’t plan on talking about the su***de attempts in detail as I’m embarrassed by them.

At about the same as the first serious attempt, I went camping with my first serious boyfriend. By the time we arrived back to my parents home (They were leaving for a short getaway), I fell incredibly I’ll. The guy I was dating promised my parents he would take of me while they were gone. My symptoms were incredibly tired, fever, sweating, vomiting, and nausea. When my parents arrived home a few days later, I was still sick. I was sick on and off for a few months. My mom kept taking me to doctor after doctor and eventually it was revealed I had something called CMV. (I may go into this more later but for now, nothing more needs to be said).

In my early twenties, I was diagnosed with Attention Deficit Disorder. Going on Medication was amazing for me. It completely changed my life. I was able to think about one thing for a longer period of time.

For those who do not know, I am bisexual. I have only dated one woman who I was with for 8 years. She dumped me when I was 33 or so. And I moved back home with my parents. About 4 or 5 months later, I met my husband on Match.Com. He was the only date I went on. One month later, I agreed to move in with him if I could bring my cat Simba. One year later my then boyfriend proposed. 9 months later we married. Within 6 months or so I got pregnant and had a miscarriage. I’ll go into that later in another post. At some point. I got pregnant and had my son. More on that later too.

About 2 years after my sons birth, I had my gallbladder removed. And a year or so after that I developed a blood clot in a vein to an o***y. I was on blood thinners for 2 or 3 years before it finally cleared up and I was fine.

And that wraps up the health background. This became longer than expected, the next post I’ll start with my current health mess.

24/10/2022

I’m working on the first post about my health. Here is a Chron Pain Meme

14/10/2022

2nd and final silly post!

Part 2 of Introducing everyone to me.

I’m fascinated by Serial Killers, plane crashes and prisons (Including the treatment of prisoners- especially Women.

Political Party: Liberal

How did I meet my husband? Match.com

If I could live anywhere in the world, where would it be?
Germany or Australia.

What makes me angry? Trumpers, bullies

What job did you want to be growing up? Nurse

If you could share a meal with four people, who would be those four be? Barack Obama, Joe Biden, Mark Twain and Abraham Lincoln.

Are you an Introvert or Extrovert? Most definitely an introvert.

What are your most used emojis? 😂🤣😊😭❤️🤷🏼♀️😁😍🙄

What cartoon characters do you wish were real? Roadrunner & Coyote and the Animaniacs

If you could have any superpower, what would it be? Flying

What are your favorite cuss words? ALL OF THEM

If you had a parrot, what would you teach it to say? Cuss words!

Android or IPhones? iPhones!

Macs or PCs? If I had disposable income Macs. But because I don’t, I use a pc.

Coffee or Tea? Coffee!!!

Next up: Earliest health issues and the beginnings of my current medical hell

13/10/2022

Hi! My name is Cornelia and I have a lot to say.

When I was a kid, I always wanted to ask silly kid questions to famous people, like what’s your favorite color etc. Since that never happened I thought I’d start this blog with fun, silly get to know you questions, until I get to the medical stuff. I think I’m going to do this in 2 or 3 parts. This one will be all of my favorites.

How did I come up with the title of the blog? When I first started thinking about doing this and and was jotting down ideas for this, the title just came to me, on day one. I have no idea how my screwed up brain actually thought it up. I immediately wrote it down so I wouldn’t forget it.

What is your favorite color?
Ever since I was a child, my favorite color has always been purple. My wedding colors were Purple & White.

What is your favorite dinosaur? Brontosaurus, Stegosaurus or T- Rex

What are your favorite wild animals? Meerkats, Chipmunks, Fennec Foxes,squirrels, Raccoons & Giraffes.

What is your favorite holiday?
Christmas

What is your favorite author?
Mark Twain

What is your favorite tv show? MASH

What is your favorite Disney Character? Timon- the Meerkat from the Lion King.

What is your favorite Dessert?
Ice Cream is #1. Tiramisu is #2

What is your favorite ice cream flavor?
As an adult it is Banana. When I was a kid it was Strawberry

What are your favorite vegetables?
Lima Beans, Asparagus, Cauliflower

What are your Favorite fruits? Watermelon, Raspberries, blueberries, peaches

What is your favorite soda? Root beer, Sunkist. I normally don’t drink much soda as I don’t like it.

What are your favorite breakfast foods? Pancakes, scrambled eggs and buttered white toast.

What is your favorite appetizer?
Cucumber sandwiches

What Are your favorite Christmas songs? All of them!! Just kidding. I love Christmas Music! Ave Maria - favorite all time songs. At my wedding I did the walk down the aisle to it. O Holy Night, Twelve Days of Christmas, Grandma got run over by a reindeer. Huron Carol (Sarah McLachlan), I want a hippopotamus for Christmas, Santa Baby. Pretty much all of them.

What is your Favorite Christmas Album? Winter in Scotland by Steve McDonald and Hollie Smith.

What is Your Favorite Muppet?
Fozzy and Kermit. And Beaker.

What is Your Favorite Golden Girl? Rose - Betty White. 😭😭😭

What is your favorite Beatles Song?
While my Guitar Gently Weeps; Hey Jude; Let it be; When I’m Sixty Four;

Who is your favorite Beatle?
Ringo! He’s as cranky as me. Plus he’s the best looking.

What is Your favorite instrument?
Violin and Harps

What are your dream dogs? Rescues. Then Shiba Inu, Huskies, Corgis, Golden Retriever.

What is Your favorite season? Spring

What is Your favorite bird?
Tufted Titmouse, Cardinals and Blue Jays.

What is Your favorite sea creature? Seahorses, Otters, Dolphins

What is Your favorite big cat?
Caracals, Cheetahs, Panthers (Black Leopards)

What was your favorite children’s book?
The Very Hungry Catepillar.

12/10/2022