My Autoimmune Journey

The Beginning of My Autoimmune Journey Or The Middle?

In the beginning of my journey I had no idea what was going on. I thought I was stressed out. 

I had long hours at work, lots of competition and stress. High overhead in bills  and was self employed so I had no time to take time off.

I was in my thirties when I noticed something off. But I had signs in my early twenties that I should have mentioned to my doctor.

In my twenties I was losing hair. I chalked it up to stress. And I thought changing my hair color had something to do with it so I blew it off.

In my thirties I started to notice my hair still getting thinner but of course stress as usual and blew it off still. And after all I wasn’t a spring chicken anymore. Back to hair color changes that had to be it.

I was also a music student. Well, I studied voice and performed here and there along the way. I also volunteered and still had to have time for a social life. I had a full schedule.

I was always pretty thin naturally and about 2002( Yes I am really old) I lost weight from my naturally already thin frame. Many people called me petite at my 5’9 height.

I was very into my martial arts at this time I was doing it for stress release and to get into shape and tone my body. Yes, I told you I had a full schedule. 

Quite frankly I wasn’t complaining about losing any extra body fat. After all I was working on that last five pounds type thing. 

But the thing about it was I ended up in a stage where all the muscle I had gained while losing weight started to disappear. I couldn’t get it back.

I felt weaker and I had less stamina. Yet I was the one that usually took classes with the hardest teachers that pushed the hardest. I took the classes that beat you down and pushed your limits. My Saturday mornings were not for sleeping in.

My legs looked great my abs were ripped. My arms were thin but very muscular. 

But the more muscle I had I started to burn and lose them and  the weaker I became. My stamina took a massive hit.

I found myself unable to breath one time while sparring and I was so confused. 

I took some time off thinking I was just in need of my body relaxing and me taking time to destress.

When you are young you don’t really think to slow down unless you are forced. But I had no choice. So I pushed less and cleared my schedule to be more reasonable and just relax more.

I let my body sleep when I felt like sleeping in. But the problem was I could never sleep. So I need up sleeping in much more once I finally did fall asleep.

Again chalked it up to my body needed it so I have it.

And quite frankly, who complains about losing weight and having too much energy to fall asleep? Not something I thought to go to my doctor about.

I stuck with it. And had random weird things. My heart would seem to skip a beat slow down freewill then pick up again.

Now I still was considered to be young and I took care of myself and ate healthy so agin I chalked it up to worry and stress. 

It didn’t happen all the time and was rare. So who would think it was serious?

Add to that fact I hated going to the doctor. I had to be dying to go to a doctor. I spent an entire childhood in and out of the hospital as a sick child, I wasn’t going to live my adult life in the same way.

I ate healthy I lived healthy. I thought. 

And it worked for me at a more relaxed pace. Until one day I woke up unable to breath. I thought I had a respiratory tract infection now almost late thirties. It felt like a mold allergy.

But it didn’t go away with a prescription for prednisone and a daily allergy prescription. 

It lasted FIVE months. I also didn’t realize the previous symptoms were not separate situation. All these were tied together and in fact one diagnosis causing them.

But I didn’t talk to my doctor thinking they were separate and thinking they were lung related.

The breathing issues that lasted so long felt exactly like asthma. There was no reason to think otherwise and only try to figure out what was triggering it and fix it.

Because I did not know my doctor also did not know to look another direction. 

I was so miserable. And I lived off of my savings unable to work for this entire “episode.” I had a few more of these events over time just randomly starting out of the blue. But near stressful times in my life. 

Notice the theme? STRESS!

When I realized it was more than stress I started to pursue it and because they were random weird thing that felt lung related I was thrown off. It hindered my ability to get answers.

And by the time I started to fully pursue it I was in an area where doctor are notoriously how should I say it… Evil and unprofessional at best.

Because I started to realize my breathing issues was not my lungs and started telling my doctors it is not related. I know something else serious was going on. 

But doctors ignored all my many symptoms and rolled their eyes as the list of problems got longer and longer from lack of diagnosis. Not to mention the problems I didn’t know were related and seemed separate but actually were not. 

Now that I know what it is and was causing all these symptoms, it makes so much sense to me and they were all tied together.  I now know exactly what it was wreaking havoc in my life.

I had three more major events both when moving to a new country in one case and traveling to another in another event.  

Exciting but stressful with all the unknown variables I suppose. 

I found out what it was after a long process of being told “No, you can’t get your health back we are not interested in helping you.”  I actually head one doctor tell me no she was not interested in helping me!

“We are not interested in diagnosing you.” “We are not interested in anything but collecting money from your insurance go home.” Is clearly what the problem was. 

OK, doctors didn’t tell me in those words that they were only interested in collecting money. They didn’t have to. Actions speak truth and louder than ignorant words that they spew on many occasions. It’s what they did and how they treated me that told me all I need to come to my assessment of them after all was said and done. 

Reading their notes in my chart made me want to vomit. 

I was so disgusted and so insulted so many times. Such a vile situation and behavioral disorder I had to endure from these hateful people that call themselves doctors. ( In my case) Apparently so many others and I am not alone.

I had day dreams of smacking the next MD that treated me in this manner into the next century. I envisioned asking them, “Now that your jaw is wired shut how do you like medical care now? Now how is it working for you?”

But I never did. It was only a wish that clung onto my soul. Collecting more anger the longer this game of collect from as many patients with no work carried on.

In reality I had become so weak I could barely walk I couldn’t have even my daydream because an uncontrolled reality of misery. And there was nothing I could do. I did my part. I sought out medical care and took care of myself as usual. But I could take care of myself all I wanted but I had an actual medical problem that no doctor was willing to take care of.

And surely it wasn’t because it was too hard to figure out, God gave us ears for a reason. All they had to do was listen. But why when you can get paid to be rude instead and solve your bad day at the office taking out on others for regret of going to medical school I suppose. 

I was treated as an inconvenience and in the way to their coffee break. Spoken down to called a liar, belittled and even literally left for dead in a life or death situation, because surely I must be faking it.

And there was absolutely nothing I could do to fix my health or get back to life until I could find a real doctor that listed. 

My life was on hold, what was left of it, as I lost everything. I mean everything! I even lost my ability to walk for almost a year. 

While the doctors gained financially every time they called me in to talk down to me to somehow make up for their petty boring lives I suppose. Making it look like they were working trying to figure things out but only wasting my precious little energy to even get there when I could have slept later and done dishes or read to my child instead should I have the energy.

When in fact, they had no intention to help me in their chosen field.

And one massive embolectomy later after almost dying with blood clots throughout my body that turned into full occlusions, and then becoming visually impaired with damaged optic nerves right after relearning how to walk. I am here…

 Graves disease I now know causes heart palpitations, and can cause vision loss. I now know I have autoimmune as I suspected and was outright denied the opportunity to be treated to recover my life before it caused a massive embolectomy. 

I was outright denied an opportunity to heal and recover and have any chance to fix my health by stopping it in its tracks.

Instead the doctors I met destroyed my health and life by refusing to diagnose me and properly treating me. Ad tp make matters worse once diagnosing my severe Graves they waited another six and. half months to even start to treat my graves disease! 

One of my surgeons in my embolectomy was so worried about my tachycardia during surgery he told me they couldn’t figure out why. He said my heart rate  was dangerously high and the look on his face said it all. I explained some things and they ran some tests and told me I had Graves disease. They brought in a socialist for that and that is who left me hanging for all those months untreated.

I’m grateful I ended up having great surgeons who saved my behind when I could have been dead. But the rest? I could definitely do without. What a waste and what and enraging situation. 

Never will I ever get back what they stole from me out of ignorance, lack of character, lack of integrity on their parts. 

My young child also will never get back al they stole from him either. They stole cookie baking sessions on Saturday mornings, family time, his play times and park time. All the things mothers do with their children was literally impossible for me to share as much as I should have.

He will never get that back.

He was terrified in the back of the ambulance thinking I would die when he was trying to help call ambulance. He was only little. He cried and silll does telling me he is terrified they will kill me and he will be left alone. He is afraid I will die. 

He has coe with me to all my appointments and he sees how I am treated. 

It was then they tested my thyroid and figured it was graves disease. After more than one wrong and fraudulent diagnosis and I had had enough!

But now I know. And now I am using it to help others. And I am going to turn the tables.

As I said before I am grabbing the bull by the horns and changing my situation. 

I am sure to the chagrin of these doctors who will surely get a proverbial smack into the next century of course.

It always angers abusers when you turn the bad they created for harm into something amazing. Even m=better when some are removed unable to har anyone by fraud even further. 

Oh how they hate it! And they will hate it. But hey, so did I!  One of us is doing a good thing. There is a difference.