Now what….

I may have been feeling ok but I knew it would not last longer than a month. Went to my general doctor and asked for the records I bought plus a copy of my records from his office. Again he refused to give me the records I delivered to him from the GI doctor and what they did give me was minus anything related to outside treatment and prescriptions written. I didn’t understand the deal with the prescriptions till many years later. Just to say… those commercials we see about if you took this medication please call the law office… you may qualify for compensation. Thank God I didn’t need to call but a lot of people did.

I couldn’t trust these people plus that general doctor tried to convince my family that I was addicted and needed to get past that first. My family was pissed. I even spoke with a clinical psychiatrist to make others feel better. The psychiatrist told me they didn’t detect any addictive tendencies and did not believe I was addicted to anything. They also told me that what I was being told about detox was incorrect. Three days in a hospital to just switch medications would do the job if what I’m being told is at all true.

Next time I got sick I called someone else and went to a local hospital in a different city nearby. I went a few times without being kept. They addressed things quickly and I was able to go home. The same ER doctor was there. I was doing well for about 2 1/2-3 months. I got sick and it was extremely bad. I convinced my family to take me there.

Surprise… it was packed. It was so packed that after several hours of me puking on their floors, I still wasn’t taken to the back so my family put me in the car and was ready to leave. That day was bad and an important turning point. I had been sick for so long that I wasn’t even as responsive as I should have been.

I was pushed ahead for triage and they had to rush me back to a room with a crash cart. My pressure was extremely high like 200/180 and I was tachycardic, lethargic, dehydrated, vomiting, and whatever else you can think of. They had a hard time getting an IV started because of dehydration but once it was, they pumped bags of saline and blood pressure medication by IV, under the tongue, and patch on arm. Pain and nausea medications and a lot of other things I don’t completely remember. I know they hooked up the EKG and CT scanned everything.

I woke up in a room upstairs. No idea of how long I had been there. They did a lot of testing and I had to be in pain to do it. I was stable for a few days before testing began. I was given a hyderscan X-ray which I never had before. The doctors called my doctor and based on the labs, there was evidence of the problem in all of them.

What if these doctors didn’t have such big egos and talked to each other. Would I have spent 3 years wondering what was wrong. Would I have suffered. By the way that GI that went through such lengths to hide my records still refused to send any records. The difference is these doctors did not respect him as the others did.

I know this is off topic… COVID-19

Because of everything that is going on, I am veering away from the topic of my blog. COVID-19 has forced this Earth into a state of panic. My family is still getting their regular checks but what about the people who work in factories. What about all those people who punch a clock without benefits and job security. Then if a company can’t make money then they can’t pay out money either.

To a degree staying at home is not all bad but how can you enjoy it if you’re not sure where your next meal is coming from. The parents who have multiple children and little to no yard space for them to play.

What concerns me are those who fight depression and anxiety. Who on a good day struggle but pushes themselves to work. I empathize because I put myself in their shoes. Alone at home and can’t be touched. Nothing to occupy their time. Nothing to focus on but the prison that is now their home.

I imagine that hospital bed and pray that I don’t end up there sick from something else because I know my family can’t visit me there. That leads me to think about all those who are in nursing homes, hospitals, hospice, and make shift intensive care units. How their family can’t be with them and how you can’t celebrate your love ones home going service.

People who are in hospitals having to deal alone without friends or family. Regardless how COVID-19 came about, so many are hurting because of it.

I pray that we come out better on the other side. Stronger, wiser, people who care about others. People who won’t let politics destroy what it is to be human.

Pushing On

I tried to find another gastroenterologist for months. Ended up on strong medications prescribed by my general doctor. I couldn’t take a bite without taking medication. It would make me sick to my stomach and give me serious pain. I put on a lot of weight even though I didn’t eat much. At the six month mark I was sick again and all the hospitals were packed. It seems the more I got sick the more I ended up in over crowded hospitals.

The general doctor called a colleague who was a GI doctor at a newly opened hospital. When we got there and finished checking in the doctor came himself and got me. I was taken to a temporary room. Didn’t spend anytime in the emergency area. I was taken straight to a room and medicated. Once I was stable, the doctor reduced medication and started some test. I was allowed to try and eat something before the medication was reduced.

By the time all the testing was done, it had been two days. I did get sick again but it was controlled very quickly. It was also the first time that I was told there is no evidence of Crohn’s. There were some things in the blood work that needed to be addressed but no indication of Crohn’s.

Because I had gone months without being properly checked out and being so unstable with my health, I had a lot of things going on. Potassium, sodium, magnesium, calcium, pancreas enzymes, pituitary gland, thyroid, hormone levels were all out of wack. That isn’t even a complete list of things going haywire.

After several days I was able to go home. Still have no answer for what started this all but I was told no evidence of Crohn’s and so I stopped taking the medication for it.

The sooner this is over the better, so…..

The sooner this is over the better, so…..

No One Cared…

I spent many months and went to several different GI doctors. All I wanted was for someone to take my case. I still needed treatment for something I still did not know for sure what it was. If the diagnosis was right, then I needed continued treatment for Crohn’s.

I had a list of seven GI doctors that I made appointments with, called, or saw. Most of the ones I did see was unable to get my medical records. They would call and talk with Dr. S while I’m in the room. Then come in and tell me they could not see me as a patient. Some would send the nurse to say the doctor wasn’t taking new patients. I got months of these rejections.

I finally went to a doctor I had gone to early on during this process. This is someone who I saw once. I was hoping he would remember me plus other doctors that I spoke with had full schedules. I figured they would treat me as an established patient. He did recognize me. Came in to speak with me first. He asked what was going on and I told him. I showed him the last discharge paperwork and all of the prescriptions with Dr.S’s name on it. He told me that the nurse requested the records but Dr. S requested a phone call. He said while he was waiting on the staff to get him on the phone, he figured it would be a good idea to speak with me.

I showed him my prescriptions so he could gather what I was being treated for. He assumed Crohn’s based on my discharge paperwork having Crohn’s and IBS written on it. I told him that no one would see me as a patient and I’m not sure what that doctor was saying to everyone except he never told me I had Crohn’s.

By this time that jerk of a quack (in place of the name) was on the other line. I waited about ten minutes or more. Doctor came back and told me he refused to supply the medical records. He also said he would not be able to see me either. I looked at him with tears in my eyes, this time out of anger, said I didn’t know where else to go and I need to know what he is saying. First, the doctor told me that we never had this conversation. Second, he told me I don’t know what you did to piss him off or make him not like you but he has a grudge against you. The doctor said he told him the same thing about how he never diagnosed you with Crohn’s, only IBS and that you were having depression issues. I told him you had the discharge paperwork and prescriptions that indicated treatment for Crohn’s. Then he says he thought it was Crohn’s early on but BEEN changed that diagnosis to IBS.

The Doctor told me something is going on and he does not know what it is. He says he does believe me but did not want to get involved. He told me to find someone beyond that doctor’s reach to help me. He said to find someone that has no ties within Herman memorial system. He told me that he also requested the hospital records and when he did not receive a fax he called and was told there is no record of me ever being a patient there. All he could say is that this was beyond him.

Angel in the mist

Sometime later despite my calling… oh and screaming and crying… she came back. Put me back on a saline drip. Told me that she had called the Dr. S several times mom and then called the general doctor listed on my chart. After hearing from the general doctor he reactivated the IV but refused to give me any meds.

I finally explained to her what I was given and that I was here 3 days. I was weak and had no idea how long it took me to explain things. I think she prayed for me then she left.

Of course I called several times and each time she stuck her head in and said she was waiting on a call back. She came back at some point giving me pain and nausea meds. I asked if it was one time dose and she told me it was every four hours. You have no idea how relieved I was. She explained that she had to call another doctor on the floor who basically replaced the general doctor on my chart.

She was definitely my guardian angel that day. All I wanted to do was get away from that man and out of that hospital. I was able to leave the next day. I didn’t know what his plans were for me if I had stayed. It was what movies are about, not my life. A real horror story happening to me. I don’t remember what he said for sure when he came by to discharge me. He directed the conversation towards my family and what ever he said struck a nerve with them. I told them to never bring me back here again.

I immediately requested my medical records from the hospital and directly from the GI doctor’s office. Normally the hospital would confirm by fax and the doctor’s office would call when the records were ready for pickup. The hospital went from the records weren’t ready yet to there was no record of me ever being there. Then there was no record for me ever being at any hospital under that doctor. His office gave me the run around for months. Even paid the 10 bucks. An hour drive every time and yet still no records. The doctor even refused to see me. I finally asked for my money back and even that took an act of Congress.

I even went to my General doctor’s office to request for the records that I knew I brought there. Every time I went to the hospital I picked up the records from Dr. S’s office and delivered them to the general doctor, Dr. G. I did this to make sure I had access to my records. All of that and Dr. G’s office refused to give them to me. Suddenly they had a policy not to release records from other doctor’s. Never before but during that time period it was. I tried to see Dr. G to ask why. Waited an hour and I watched him leave out the back door.

I spoke with a clinical therapist at a much later time, who informed me that the doctor who comatosed me was trying to prove he was right. He was trying to prove I was addicted to drugs by doing a detox. I was told 3 days would normally get you out of that sick painful feeling.

Unfortunately for me, when he realized he was wrong he tried to cover his tracks. He told people what he wanted them to hear.

Just to break the monotony

Why do people like you exist

Am I just a diagnosis to you

Do you look at me and see dollar signs

You tried to kill me

Both metaphorically and physically

How many people have you turned away

Looking at them like their just some ‘I’ve fallen and I can’t get up’ epitomes.

Do you sleep at night?

Do your nightmares not hunt you?

They should, remember you tried to kill me.

You even tried to silence me.

You tried to take away my sanity

Then your ethics

YOUR ethics

Allowed you to blacklist me

Others of you

Many others of you

Thank God for me

You didn’t kill me.

Someone else saved me

Someone else took the time to treat me

They may not be what I hoped

But they aren’t you.

I did not cease to exist.

I fight everyday for my life.

I fight everyday for my health.

My records disappeared

Or so you thought

You wanted me to go away

To cover me up

You and YOUR board

And then charge me for the privilege.

Remember dollar signs can leave a paper trail.

Instead I’m out here

I’M OUT HERE

I’m out there knowing what you did to me

Knowing what you could have done to others.

Everything in the dark comes to light.

It won’t be long now.

Monotony. Monotonous.

Not anymore.

Psycho continues

This psychiatrist was asking me questions and I was asking for pain and nausea meds while falling asleep. I just didn’t know. I thought he was a general doctor. He tells me who he is and precedes to say, “you don’t need anything else”. “You’ve had too much as it is”. I’m gonna tell them to discontinue everything. I tell him I haven’t had any pain meds and he tells me I’ve had pain meds since I’ve been in and had some two hours ago. I freaked and said look at my chart I’ve been sedated. My family told me I was out for three days. I was accused of lying and he told me the doctor said I had been on Demerol and it’s evident, it’s too much.

The psychiatrist went to pull the chart and it wasn’t there. Shortly after a nurse came in. She said everything had been discontinued. Even the IV fluid was the last bag.

My worst nightmare. It didn’t make any sense. Why would someone do that to me. We’ve never met before. What could I have possibly done to you.

I started vomiting every few minutes until it was more often. Remember I’ve been on IV fluids for at least 3 days not to mention I had been vomiting for hours prior to my arrival at the hospital. Obviously I wasn’t throwing up food. You never know what people are capable of until it happens. I was still in shock. I didn’t know what to do.

At this point I went from praying to pleading with God to send help.

The night nurse was strict. She came in and introduced herself and let me know that nothing was ordered. I still kept hitting the buzzer telling her that I was still throwing up and it wouldn’t stop. I didn’t know if I had her as a nurse already until she later told me that she did not know what I was on before.

Ethics…never

I got sick again and while in the ER the Dr. S suggested that I was in withdrawal and said something about three days. Told me and my family that he could give me a sedative along side the pain and nausea meds. Said it should work better and give them time to figure out what was going on without me being in pain so much.

Lie…lie…lie… this so called doctor put me in a coma for three days. Never gave me pain meds. My family had a difficult time seeing me that way because I was clinching my fists in my sleep and tossing and turning. It was clear I was not resting peacefully. Whenever I would start to wake up the nurse would just knock me back out. Three days of your life gone without any memory of that time. Then to wake up in pain and groggy. Wondering what was going on.

The Dr.S came by briefly and stated he would have someone evaluate me before giving any meds. A psychologist or psychiatrist came to my room right after waking from and induced coma. I was still in and out of sleep and in severe pain. At the time I wasn’t sure what that was about and apparently my family did not know because Dr. S told them things were good but I was still detoxing.

Cliff Notes…

As I said cliff notes version. My story is a span of 30 years or so with a huge focus on the last 20 plus years. This is a blog not a book so… While at the particular hospital I received a diagnosis of Crohn’s by the GI Dr. S.

Apparently, at the time, it was an up and coming way to arrive at that diagnosis. I had never heard of it then and didn’t understand. Truthfully I didn’t care when I was told, all I wanted was to feel better. It took days for this diagnosis. Test after test, people poking on me and pressing in my stomach all while I was sick and hurting. I believe it was coming up on 72 hours of pain beyond level 10.

Stop plzzz

I was given the meds for crohn’s prior to leaving, and my other symptoms were under control. I read up on the disease (books were more prevalent there for facts) and realized that it never goes away. You just have to take meds, vitamins, exercise, and diet change, and hope it gets under control.

So, almost 2 full years of being in the hospital more than I was out, I asked for surgery, which is a huge deal. Bowel resection to remove the infected piece. I didn’t know what else to do. It just didn’t seem like anything was working.

To put things in perspective, I got sick my senior year in high school. A year later I got sick freshman year in college. Which is difficult due to finals. Plus I was a biology pre medicine major. It’s hard to miss class. By my sophomore year I had a ‘significant other’ six months later I got sick again. Then three months later sick again. It was extremely difficult for school and for a relationship. At this point things kind of just went down hill.

Crazy thing is college years were great for me. I was working out, in organizations, being more social and just enjoying life. Plus I enjoyed traveling with the gospel choir. So getting sick regularly was difficult.

Anyway after those two years and me pushing for surgery, Dr. S started saying he didn’t think that was causing my problem but something else was going on too. I wasn’t really getting straight answers anymore and when I saw him in the office he always laid out a plan but in thy hospital was different. I wasn’t in a good place to absorb information during a hospital visit so he spoke with my family. We were all so new to this. We were trusting then and relied on the doctor. Plus Internet was not as prevalent then.

Anyway by the two and a half year mark. Dr.S had convinced others that my crohn’s was under control and I was hooked to the meds and making myself sick. He said I was depressed and started putting irritable bowel disease on my discharge papers next to the Crohn’s diagnosis. This is when things went wrong and I didn’t comprehend what was happening then nor did my family.