I am Extremely mad still. I have been mad for weeks now. Four weeks to be precise. Well longer if you count the run around trying to get to the bottom of things completely when dealing with auto immune diseases. And the worst part of my anger is that all of it could have been prevented.
That’s right. All of it!
Four weeks ago I was about to do Saturday chores with my five year old, but there was a change of plan.
Just as I was getting changed into something comfortable to do my chores I felt extreme weakness in my leg starting from my glutes down. I noticed my foot was extremely pale and the pain was brutal. Like nothing I have ever felt before.
My first thought was to soak in the tub to get rid of the intense cramp and get my blood flowing. But that thought was quickly changed to, “I need to get an ambulance here.”
I was on the ground unable to stand or sit. I could not get confortable and the pain was brutal.
So my little boy’s Saturday chore soon turned into him helping me get that ambulance. I was howling in pain. Breathing deep to calm myself and trying to focus on somehow relieving that pain. But that didn’t work.
My little boy held the phone for me so emergency services could hear me. And he was such a trooper actually. He did real good and I am proud of him. He was actually pretty calm for his age and was the one thinking how to keep the situation from escalating.
As the ambulance rolled up I was so frustrated because yet another crappy health day prevented me from cleaning up my pig pen. (I know without a shadow of a doubt, that if you are researching auto immune and other people’s experiences and searching for info you know EXACTLY how messy a house can be when you are ill and no one is listening or taking you seriously.)
So now that I know my house will never be spotless again..
On the way to the hospital I was in a panic. I was wondering if I was going to die and leave my son motherless. The EMT was worried for me. More than the shcmucks I was about to meet at the emergency room.
This is where I really miss NYC and professionalism from the medical community. I know they are not perfect, but I have never had a bad experience, nor have I ever walked into a doctors office and been out right ignored or eye rolled for my health.
As soon as I got to the hospital I asked that they removed my son and have someone come and take him to safety and not have to hear me cry in pain, or worry about me. He is too little.
I was examined and a resident doctor started to check my foot that had no pulse. And I actually had to hear that doctor say in front of me, “I felt a pulse.. But then I just cut myself so maybe that’s why.
No one else checked. And from there they dismissed the ambulance tech statement of I have no pulse.
And here my nightmare begins! I know you thought it was when I was on the ground in agony and when my little boy had to call for help?
Nope, it was at hospital. After having an ultrasound where the blood flow in my veins was ok the doctor came in and told me “we are going to make you walk and if you can walk we are going to send you home.” “The blood work came back fine we don’t know what’s wrong with you”
I figured they would see I can’t walk and then keep me, so I did’t say anything.
A nurse from hell came in and was fine the first few seconds. And I had to go pee real bad so I wasn’t going to say no. But…
I COULDN’T WALK!
I kept saying I can’t do this. She IGNORED me. It tok me several attemots to get her to close my gown so the rest of the patients didn’t see my boobs hanging out. Then she put up her elbow with a complete disregard for her profession, as if for me to hold her elbow for help. It did not work. The agony was so intense I wen to the ground for relief.
I had such extreme agony shooting up my leg from my ankle to my hip and lower back.
She got angry at me! She rolled her eyed at me as if I was faking it! She snarked at me ” What do you want me to do? I can’t pick you up!” All I could do was cry.
That’s when I asked if they were all savages and treat everyone so horribly in this country. And I’m not ashamed of it. I see often how patients are treated when I have been in the emergency room.
Can you imagine?
Their bright idea was to send me home with OPIOIDS and CRUTCHES!
I explained the the attending physician that I could not walk. I had a two story home and I would have to decide to stay in bed with a bathroom or downstairs with access to food and water. This same doctor started at me crying on floor entering notes into his patients files. He said nothing to the nurse.
His suggestion was a family member take care of me. I explained I was not tolerating dysfunction. And as dysfunctional as this town was I was stuck in it but not accepting what was normal here. I knew at that point that doctor was judging me and assuming I was faking my issue and like the many trying to get something out of them to get high.
Even though I do not look like it, speak like it, or try getting anything. I do not do these things because I have a medical problem not a drug problem!
This type of behavior form doctors around here is unfortunately normal. Which puts on incredible strain to doctors that follow their oath. And patients like me. You see it is full of drug addicts looking for drugs in the hospitals. But their answer is to give them drugs?
The people that transport patients to testing were so amazing to me while I was in there. They kept coming to me to check on me. One offered me a hug. Two of them kept coming in to check on me and ask me how I was doing and if I was OK. They could tell I was in so much pain.
I’m not sure why the doctors or nurses couldn’t figure out the distress I was in. Yet medically untrained staff could tell and had so much compassion for me from beginning to end of that visit. One was shocked at what the nurse did to me.
I explained to the doctor when they gave me a prescription for narcotics I did not want them. I had enough problems I didn’t need that one too
There was nothing I could do. If a doctor refuses to treat a patient I can’t force them. I couldn’t believe it.
My neighbor helped me up my stairs to my room. And there I stayed unable to move.
My family doctor read the notes and said there was something wrong with my blood when I called her. I needed to get to a different hospital.
I was ignored again until morning. Because I stood up for myself. But I was given a CT scan just in case. And I had given all the things I had regarding auto immune symptoms etc. That I deal with on a regular basis to make things easier because I knew these were all tied together. I shared all thses symptoms to first hospital as well.
When I finally had the CT scan a doctor came rushing out in the morning after it was done. I was in so much pain still.
He told me this has to be caused by lupus there is no other explanation. I had several blood clots in my leg and several in my pelvis and one in my stomach aorta.
And so I was rushed my ambulance to another hospital that had a surgical team waiting for me in the entry way it was that serious.
I don’t even look like a drug addict, I don’t look like I am trying to get drugs in any way. My neighbors jaw dropped when she heard that’s what they thought. It’s the only possible explanation.
And I’m angry! I’m unable to let any of this go. EVER! I want the first hospital doctors fired! I’m not going to stop until they are. The attending physician lied on paperwork to cover his ass. I’m tired of doctors around here ding this.
This is the second time I needed emergency surgery that could have been prevented if doctors had listened and not assumed I was like 70% of their patients around here looking for drugs.
I was hospitalized quite a long stay. Recovery was extremely hard. I still have a hard time walking and my son and I have no one. Yet I have to somehow take care of him. Because we have no family.
I magaed to get a rhumatolgist in because I kept telling the doctor after my surgery I knew it was related to my auto immune.
It happened that the doctor on call was a doctor I already saw. I kept being sent away with an appointment in the future because he suspected something was wrong but I could never turn my symptoms on and off for appointments.
Luckily I had a copy of my CT scan and he noticed something. It added to my other bechet’s symptoms of sores in mouth and on genitals and said multiple clots like this was a part of the disease. And ordered another scan to look for inflammations.
And now I just wait. I am scared to have a rerun waiting for a difinitive diagnoses and treatment. It has gone on too long. And I have too many horrendous doctors to deal with here in the mean time.
I’m going to share symptoms for those of my readers that are also trying to nail down a bechet’s diagnosis in my next post. And I will share the one’s I have had and how they manifest on me and all that I have found out about the disease.
If this is also a diagnosis for me or a possible diagnosis all I can say is I have toxic sludge in my genetic make up. And as my neighbor says about my family because they like the doctors around here are horrendous. “Your family need a no breed contract when going out in to society”
I Laughed when she said it. They really are an awful family to have. But I am worried for my offspring at this point. I may not have the horrible abusive ways my family does. But I worry about what my genetic sludge will pass down.
I hope to find out do I can test my little one’s genetic make up so at least I can try to keep it genetics only and not manifest, or at the very least have answers so he doesn’t have to suffer through any medical distress.
And this post is just one more reason I need to find a way to get back home and out of the area I am in. I need doctors who will listen and care for me as a patient when I have my symptoms and not send me home with drugs to alleviate their workload.
And now I have an ugly wound and soon to be scar on top of my cellulite behind from no strength to work out, that says I will never be able to go the the beach again.
I am so grateful I have a family doctor that is excellent and believes me and takes care of me. I only wished they were an ER doc at the time this happened.