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Since my first chronic illness diagnosis in 2001, my life, that is my chronic life, has been nothing short of a nightmare.
I know my body well. In fact, I know better than any test or doctor. Tweet
Not to sound conceited, but not one test or scan has ever shown the destruction that has been taking place in my abdomen since 2003.
However, my theories have been validated in surgery and each surgery was proved necessary.
Before you suggest that my fears aren’t warranted, I need for you to understand something.
I do not have White Coat Syndrome, where patients experience a higher blood pressure reading when at the doctor’s office, it goes way beyond that.
My fears and phobias stem from incompetent care. Not from just one doctor or surgeon and I am talking double digits!!!Tweet
In case that is not enough of an explanation, here is a list of some of the reasons I fear doctors, hospitals, and test results.
Test results are not perfect. In fact, they often, in my case that is, don’t show anything at all.Tweet
- Not one test ran in the emergency room indicated that my appendix was about to burst. I spent 7 hours crying from pain and being told that they can’t see a reason to give me more pain medication. It wasn’t until a shift change that the real problem was discovered. The new doctor pressed on my appendix, my body bounced off the table, and he said it’s her appendix. He then prepped me for surgery. My appendix could have burst inside had I not made it through a shift change.
- Not one scan showed the giant cyst that was pulling my uterus, left ovary and fallopian tube, and bladder to my sidewall. This too was discovered in surgery.
- Not one scan gave the surgeons I begged to help me after my hysterectomy a clue to the horror show that was taking place in my abdomen. A large, infected piece of my fallopian tube was never seen, nor were the adhesions that were strangling my bowels.
Sometimes they get mixed up or read incorrectly.
I experienced something that I thought would never happen to me prior to the second surgery performed to fix my botched hysterectomy.
The surgeon was reading my test results when he mentioned that my appendix looked fantastic. I stopped him and said that there was something wrong because I had my appendix removed 3 years earlier!!
His response? He argued with me!!!! He insisted that the report was read correctly and that it was mine!
Thankfully, I had already adopted the policy of never seeing a doctor alone, because had my husband not been there to witness this conversation, I probably would have had a mental breakdown.Tweet
Instead of checking to see if the results were correct or even mine, he questioned whether I really had an appendectomy….. I told him he could call the hospital where it took place if he had any more questions.
Later after this surgery meant to address the rest of the botched hysterectomy, I asked the attending surgeon if he saw an appendix. He said NO! The validation joy didn’t last long as I soon began dealing with the fallout from the errors he made during surgery.
Think surgical errors aren’t common? Well, they appear to be with me!Tweet
Apparently, there is only one surgeon in Arizona and one in California who not only know about but know where to find the only sutures that I am either not allergic to or that are compatible with my body. Why? Because no matter how much detail I go into when explaining the type of they need to use, I have had an issue with the sutures and my healing all because they chose not to listen to me or take me seriously.
My incisions became infected from staples and traditional sutures. The ones that look like regular sutures but are supposed to dissolve on their own don’t dissolve with my body’s makeup.Tweet
A surgeon was in a hurry one Friday afternoon and didn’t take the time to sew me up properly.
Even after I protested and screamed that something was wrong, (blood has never poured out of my incisions in the past) I was told that it was normal and sent home.
The next day I called the hospital who told me no that it wasn’t normal and to get back there asap.
When I did, they discovered that he left a gaping hole where he had cut into my belly button. I have seen three-year-olds do a better job of sewing!!
The doctor who performed my hysterectomy left behind a huge portion of my fallopian tube and pieces of my ovaries.
It took two years for me to get a surgeon to listen to me. Tweet
I was told repeatedly that it wasn’t an OBGYN problem since I had the hysterectomy.
Some refused to look past my chronic illnesses on my chart. While others told me that I needed to see a psychiatrist. But the pain wasn’t in my head, it was real.
Finally, when surgeon number 21 agreed to go in and later shared his findings, I could finally breathe. I wasn’t crazy after all.
During the second surgery to address the errors of the hysterectomy, my surgeon severed a set of nerves between my vagina and left leg.
Later one of the top neurologists in Scottsdale, Arizona informed me that there are two sets of nerves in that area. One that is commonly nicked or severed and that had been researched and there were ways to fix it. The other is a set that is so rarely severed or nicked that there was no research on how to fix it.
Can you guess which one my surgeon severed? That is right! I have permanent nerve damage.
The sad part is that every single one of those surgeons is still practicing and has never been reprimanded by the state that the errors took place in. Why? Because my lawyers and the state attorneys were unable to find a peer to testify against them.
When I woke up from surgery without feeling in my left thigh, I quickly called over the recovery room nurse.
She said that it was normal considering that I had just had back surgery. Except that I didn’t have back surgery and there was nothing normal about my numb thigh or the blood pouring out of my belly. Tweet
This took place at a world-renown hospital in Arizona, the last place you’d ever expect to be treated so poorly, but yet it happened to me.
The recovery room staff refused to allow my husband into the recovery area, even though everyone else had someone with them.
My husband had my glasses, so I was blind, but I also couldn’t walk because of the nerve damage and was weak from losing more blood, otherwise, I would have left on my own.
I have had doctors scoff at my allergy list. One actually laughed out loud, that is until he ordered a liquid for me to consume before a test he was running and I had an allergic reaction in front of him after one sip.
Others just ignore my list, leaving it up to me to go through the ingredient list to make sure it doesn’t contain one of my allergens.
Nine times out of ten my prescriptions would have killed me had I not done the research.Tweet
All we can do
Living with incurable chronic illnesses means often hearing the words, this is all we can do or there isn’t anything else we can do. Tweet
But that doesn’t make it easier knowing that there is only so much that can be done.
However, all we can do or we are going to blame it on one of your chronic conditions don’t cut it when vital organs are being attacked.
My body has experienced more damage due to the medical communities dismissal of abdominal pain. Tweet
What’s really sad is that I am only taken seriously when I have been in a car or other type of accident. Anything that could remotely be blamed on fibromyalgia, psoriatic arthritis, psoriasis, etc. is…….
This is just a handful of examples…… I could seriously fill a book about how terribly I have been treated by the medical profession.
With just what I shared in this post, are you able to understand why I am so fearful?
Do you see why I do not run to them until I am sure they cannot blame it on something else?
Can you understand why knowing I need to see someone ASAP for my latest bout of abdominal pain fills me with anxiety?
In 2016 I was told by a handful of surgeons that they agreed that adhesions were attacking my bowels. But each and everyone one of them refused to fight for me after their request to schedule surgery was denied by the head of my HMO’s gynecology and GI department. Their reasoning? The adhesions will return…..
Yes, they will return, but I won’t… especially if they are permitted to destroy what is left inside of me. On the other hand, I also fear that a surgeon will make a fatal error.
I got lucky and was able to find temporary relief outside of normal healthcare practices after being completely shut down in 2016. I just pray that I can get lucky one more time…
Can you blame me?
***** A few days after publishing this article, I had yet another horrifying hospital experience. Click here to read about it. *****