Never Again!

Let me give you a little background information. In June, I was admitted to the hospital because of a bad cough, high fever, shortness of breath, and a pulse ox of 82%. It turns out I had staph pneumonia as well as staph in my bloodstream. I spent eight days in the hospital getting oxygen, getting massive doses of antibiotics, and generally not sleeping a bloody wink; how can you when they are coming into your room every hour to poke and prod you.

Let me first say that there are many good doctors and nurses and other healthcare professionals who work at this hospital, but let me make something very clear; I will NEVER come back here again. I think I will have this engraved on my medical ID, so they know not to bring me here. There is no doubt that I have paid for several people’s salaries several times over again with all of the surgeries and hospital stays I have had, but I don’t want this to be about me. I know many of you out there have had similar experiences because you have Parkinson’s or some other disability.

The last time I was here, my stay was okay. Having said that, I tried to explain to them I was in excruciating pain but they wouldn’t do anything about it. This is more common than not in today’s healthcare system. This time, my experience was even more special. Yesterday, when I was in the Emergency Room, I had a very entertaining experience (I’m kidding, of course). My ER nurse was one of the most insensitive, heartless, belligerent people in healthcare I have ever met. If you recall, I have Early Onset Parkinson’s Disease. I have good days, and I have bad days. There are days where I can barely walk, even with a walker. I fall about once a month. Some days I shake uncontrollably and other days, I do not. Well, yesterday was a bad day. I was trying to go from my walker to a wheelchair and I was shaking badly. My right leg is so weak (more on that story in just a bit) that I had a hard time getting into the wheelchair. I was having such a bad spasm I was falling forward out of the chair. There was nothing I could do, and I asked for help so that I didn’t fall. So, what did our nurse of the year do? She called security to have them shove me down in the wheelchair, then three times over the next little bit of time that I was being triaged, she accused me of trying to jump out of my chair. When I finally explained to her that I have Parkinson’s, she quit talking about it.

So, what am I going to do now? I am going to speak with a hospital administrator/patient advocate today, and hopefully, somebody listens. To be accused of trying to jump on the floor in front of other people was probably the most humiliating experience I have ever experienced, especially when I know there are times that I can’t control my body; It betrays me regularly. But to be called out like that in public by a healthcare worker was unacceptable. There are many of you reading this that have been through something similar. Don’t ever think your voice doesn’t count. Speak up, speak out, and make someone listen. This incident was bad enough, in my opinion, that I do not think she should just be reprimanded, but she should be terminated. I am a pretty laid back guy, so coming from me, you should realize how upset I am. If she had worked for me and talked to a fan or customer in that way, regardless of whether she was right or not, I would have terminated her on the spot. I consider this situation even worse. Healthcare workers are supposed to be compassionate, caring, and most importantly, try and find a reason for what is happening rather than just jumping to conclusions.

When you live a life with a disability, you expect some looks, some comments, and maybe even some discrimination, but you don’t expect it from healthcare workers. From them, you expect kindness and understanding. I am not saying everyone should have a pity party but some compassion would be nice. When that doesn’t happen, you must stand up for your rights. If your rights are violated, speak up, and demand that your voice be heard. This is the only way that those of us living with a disability will ever be on an equal playing field with those that are not.

So back to the reason that my right leg is so weak. I found out that the Neurosurgeon at this hospital that did my last surgery didn’t do a stunning job, and that is why I am in so much pain. I had a consult with another physician, and he was appalled at how badly my last surgery was performed. I have a screw from the fusion that is pushing into the nerve root of my back; I have a great deal of scar tissue already built up around the site; they did not remove the disc where they did the fusion, which is just pure laziness and unacceptable. In addition, I have a herniated disc at the level directly above where I had the fusion surgery done. I was getting a second opinion from this doctor who recommended I go back to the surgeon who did all of my neck fusions (C4 through C7) and get him to do a revision surgery on my lower back. As my second opinion doctor said of my surgeon at one of the other hospitals in town, “that may be the most beautiful fusion I have ever seen.”

So, what do I do now? Do I just walk out? No, I can’t do that because if this staph infection is back, it could kill me. So, I guess I will go along with it for now until the absolute soonest I can get out of here. If something like this ever happens again, I will go to one of the many other exceptional hospitals in town. Unless there is a miracle and some essential things change, I will never step foot in this hospital again as a patient. If you have ever been in a situation like this, it can be humiliating and frustrating. Don’t let it go by without addressing it with someone in authority. You deserve the best healthcare available, and when someone violates that trust, you have to make it known.

Pills, Pills and More Pills

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So I take 26 pills/Injections every day. Now this may sound excessive but this is what it takes to keep me running. Some of them are preventative drugs and some are necessary. Although these drugs keep me alive, I have to wonder what they are doing to me long term. Methotrexate, for example, is a low dose chemotherapy drug, eight of the medications are just to promote sleep. If I could sleep, it might just take care of other issues.

Some times I wonder what I would do if I didn’t have good medical insurance.  There would be no way I could afford my medications. This is why I believe there needs to be some major changes to our current healthcare system. My brother, for example, is self employed and has only a discount card for his prescriptions. One of the medications he needs costs $1,200 per month (it’s only $400 per month in Canada) so he just goes without the medication he needs.  I have excellent medical insurance and I still spend around $20,000 per year in healthcare costs. I don’t know what the answer is.  A single-payer system or Medicare for all sound nice but how in the world do they get paid for? Even with all of the technology, the US is consistently ranked near the bottom for healthcare. I will leave that discussion for another day.

A few weeks ago, when I was in the hospital, they refused to give me all of my meds for fear of liability. Some would say that the sleep cocktail I am on is dangerous but without it, I literally don’t sleep at all. At least now, I get one to four hours per night and none only one or two nights per week. Now there are a lot of side effects to these medications.  Some cause weight gain, dry mouth, nausea.  I am currently on a forty five day course of IV Rocephin which I take twenty-four hours aa day through a picc line. There are days that I can barely eat because the Rocephin wreaks havoc on my stomach.

I really wish I could find a natural and holistic method in treating the issues that I have so that I can cut way back on the medications that I take. If you are like me and you take handfuls of pills everyday, let me know if you have found alternative treatments that are effective. I’m especially interested to know if you have found anything truly effective on chronic insomnia. I feel like if I could get that resolved, I could reduce my medications by almost 50%. All these chemicals that we are putting into our bodies everyday can’t be good for anyone long term. Although I am always amazed at the advances in modern medicine, we just don’t know everything. 

I’ve tried meditation, acupuncture, hypnosis, etc. I have searched for years for more natural ways to treat the issues I have but what I know is that there is no panacea out there, Everybody and their brother is part of some sort of multi-level marketing program that sells the cure to everything so I have become extremely skeptical about what I see out there. I even went to a Naturalpath but that was about as useful as a sixth toe. People spend thousands on natural remedies that aren’t effective at all. Someone even told me I needed to go to their Chiropractor because he could make certain adjustments that wold cure my diabetes. So one of these days, someone will discover a natural cure for certain diseases but until then I guess I am relegated to taking handfuls os pills everyday.