Twenty Eight Weeks, Four Days, Seven Hours & Thirty Two Minutes ... What I Have Learned ... So Far ...

That is how long it has been since I was laying in bed in April - very ill and had just opened my mouth to tell Gary that I thought that it was time he took me to the ER when I started having a seizure. See - I KNEW I was having a seizure because I was still conscious and it was the scariest thing I can remember (I have had something happen to me that was scarier - but I cannot remember what it was. I dreamed about a smell about a month ago and woke up terrified - more terrified than I have ever been - I believe it has something to do with what ever happened - but that is for another time - I just thought I would clarify that I am not lying about this being scary). I have been through a LOT of scary things - but none took over my body and would not let me do what I wanted until it was good and done with me.

It stopped after what seemed ages but was probably measured in seconds. I got out a shaky 'Help Me' before another seizure shook me. And then another.

I don't remember much of the rest of the night - thankfully the Greek god Hypnos took over and I did not need to experience any more seizures. This was my first time in a hospital in years. The memories it brought back were neither happy nor comfortable. But I was an AMATUER!

I have since been to the hospital seven more times and feel as if I am becoming much more of an expert at it.

I have separated out my new-found knowledge into sections here - enjoy - or stop reading - what ever ...

Hospitals:

- Power. You have none. Nothing more to say - just get over it.

- Dignity - see above ...

- You tend to collect doctors - and they all have their own idiosyncrasies - and choice of meds. It tends - after eight fun-filled trips to the ER - to get rather complicated.

- You can always have a plan of what to do the next time things get bad - this does not necessarily mean that it is going to work ... We decided that next time I started throwing up violently that we would take me to the ER since April the throwing up has always, always been followed by seizures. So we were going to the last place I had been since I had been transferred there from where we had been going that was closer to us. They had explained that they had a full Neuro floor and better imaging instrumentation. They failed to mention that the reason they were transferring me there via an ambulance with lights and sirens was that they thought I needed emergency surgery - ON MY BRAIN. The food was better too - so the plan was to head there and they would take care of me.

As luck would have it - I started throwing up the night before Gary was headed on a backpacking trip. I started throwing up every twenty minutes at midnight Thursday/Friday and at 4:00am I finally woke him up and told him I had to go in. I could tell he was frustrated. Especially since I was only throwing up - no seizures - but I am so scared of them - I didn't care and since he is a wonderful man - he took me in.

We told them our story and they stuck me in the ER where I tried to tell my story to a nurse and doctor while throwing up in a bowl. I will mention here - skip ahead 2 weeks and I am at my new cardiologists mentioning how badly our plan had gone awry and he said - 'Well - you have a very unusual case ... and they thought you were crazy.' Well - that explains a few things.

They transferred me to the eleventh floor - but started to read my records and did see that I had seizures so they sent in a masochistic tech to give me an EEG and he started to attach eleventy-billion doodads to my head and hair with sandy glue. Oh boy! And TO THIS DAY - I could swear that I was conscious the entire time. He had told me not to talk - I asked him just to keep me informed of how much time I had to lie there perfectly still since the sandy glue sucked and every time one of the billions of leads fell off I thought he was going to slug me. And then it was over.

They took me for an MRI - with contrast - of course - just like I had had five days before (Monday) and then for some reason - they moved me to the Neuro floor.

That night - I don't remember much of what was going on during the day - and I didn't know why. Why was I so confused? Why was everything in stop motion? Just polaroid shots of images? I couldn't grasp and hold onto anything ... and I was crying - I had no idea why - tears were just leaking out of my eyes when a young, handsome doctor walked in and said "Do you remember me?" I said I was not sure and was embarrassed that I could not stop crying - I apologized for being 'such a girl' and told him I had no idea why I was crying and he told me it was a stressful time and a lot to take in. Take in? Take in what? I made me follow his penlight, point to what fingers were moving while looking into his very kind brown eyes and then had me smile and push my arms and legs against him trying to hold them down. "Try to get some sleep - I will see you in the morning." and he was out the door.

He came back looking very tired and I realized that I don't think he had gone home between seeing me the night before. He explained to me that the MRI showed that the venous thrombosis was gone - my BLOOD CLOT had disappeared so they were taking me off the warfarin - no more RAT POISON! I could not be more thrilled ... until he said that he was in my room while I was having the EEG and that yes - I was conscious during the FIFTEEN seizures I had while hooked up to the equipment. He said I was talking to him and it was clear that I could be conscious during a seizure - something he had never seen but had read about - it was really, really rare and he agreed - it was most likely very frightening.

This news was not so great. He kept checking on me and I realized that I had some paralysis and weakness on the right side of my body. He told me a few days later that anything over 5 seizures all in a row will really 'thrash your brain' which apparently mine was ... this made me rather uncomfortable.

As the days progressed I collected doctors like baseball cards. A Cardiologist, a Rheumatologist, a Hematologist along with my Neurologist - who was only a hospital specialist - he did not see private patients. He did his specialty in what my brain was doing so I was lucky he was there because it was the first time we got a diagnosis as to what was happening - rather than just reacting to it and making it stop. I called him 'House' especially since I could not pronounce his last name - he was American - but it was rather weird and my brain just could not hold on to it.

He thought at first that I had vasculitis and immediately put me on steroids which he explained would stop the seizures. The problem in my brain has always been clear in the MRI's - my arteries and veins are constricted to the point where the pressure causes stuff to leak into my brain - causing nausea, violent vomiting and a host of other unpleasantries. This was the first time we realized that by the time I was throwing up - the problem had already started in my brain.

A bit later he came into my room and sat down and said that his 'House' and my Rheumatologist's 'House' had talked on the phone the evening before for about an hour and decided that it might not be vasculitis at all (but failed to mention why - the Rheumatologist told me later - so next time I see my cutie Neurologist - I will firmly slug him in the stomach ...) but that it was PRES. I had heard this term the first time I was admitted for my first seizures.

PRES cutely stands for 'Posterior Reversible Encephalopathy Syndrome' the cool part of that is the 'reversible' part.

Wiki states: Posterior reversible encephalopathy syndrome (PRES), also known as reversible posterior leukoencephalopathy syndrome (RPLS), is a syndrome characterized by headache, confusion, seizures and visual loss. It may occur due to a number of causes, predominantly malignant hypertension, eclampsia and some medical treatments. On magnetic resonance imaging (MRI) of the brain, areas of edema (swelling) are seen. The symptoms tend to resolve after a period of time, although visual changes sometimes remain.[1][2] It was first described in 1996.

They explained it as a pressure in the back of my brain - and they thought that it was brought about by my blood pressure fluctuating - some times it is violently high - sometimes it is very low.

They wanted to finish up the IV steroids before they sent me home on prednisone and then - wham bam I was out the door - with a list of new meds and a bunch of follow-up visits.

Since I am what is called a 'hard stick' and my veins are getting more and more ... stubborn - this was not a pleasant part of the stay. I cannot figure out what this is:

One night my IV blew - a very normal thing. The eight tries to get another one started was not. It blew in the night and the six attempts in the morning to start another was not very much fun either. We even got so desperate we tried the underside of my wrist - three times on each arm - turn your arm over and look at those itty bitty veins right below your wrist - a) it hurts like hell to jam a needle in them and b) they are too small - they will blow every time - so pretty much my nurses were either desperate, stupid or just being mean ...

They finished the steroids and I headed home, and collapsed in bed - completely exhausted and overwhelmed.

 

Doctors:

- Doctors equally love and abhor a good mystery. Which is me ...

- If one more person looks at with me with manic eyes and says "What you have / did / etc. is really, really rare!" I will probably throw something at them ... At first it made me feel special - it validated that something was really wrong with me - now it is just annoying ...

- Doctors vary in the quality of care that they are giving you. I have learned that since I was busy with the medical profession and hospitals years ago things have changed. There are hospital doctors who do not see patients in a private practice and then there are doctors that see patients at a private practice but have no hospital privileges. This is frustrating because of the lack of continuity. There are a few special ones that actually still do both - the trick is finding them ...

- At my follow-up appointment with the Cardiologist - one of those rare ones that sees patients and works at the hospital - we came up with a plan that would actually work next time I needed to show up at the ER - so I was happy.

- I then saw my Rheumatologist who explained that they didn't think it was vasculitis since with vasculitis it NEVER gets better without steroids and I had seizures before where I didn't deteriorate and die without steroids which is basically what happens with it - so we are now weaning me off prednisone.

Just so you know - being on steroids is AWESOME! I have never sweated more in my life. I probably have actually sweated more buckets of sweat this month that I have in the other 51 years of my life - seriously AWESOME ...

Just to show you - I needed to stand by my desk and do something for a bit ... here is what I had to clean up:

Like I said: AWESOME ...

Prescriptions:

- Lovely segue into prescriptions. Like I mentioned - each doctor has his own likes and dislikes and it is a hard thing to balance everything out. I came home with a two page list of prescriptions to take from my last hospital stay and that listed none of the PRN (take as needed) medications. See here:

My prescription stash? HELL NO! This is just a batch Gary brought home from Walgreens one evening. I was going to take a photo of all my prescriptions but just couldn't do it - it is too overwhelming. It is in triple digits (yes - this includes duplicates and other things) but it is all rather overwhelming. Some days I feel as if all I do is take my meds ... nothing more. And yes - I realize this is no way to live your life ...

Gary:

- Gary, to put it mildly is not having a good time. He has taken on most all of the responsibility of the house along with working full time. I feel sorry for him but I am too tired, sick and overwhelmed to help.

- He has started a multitude of projects and I have taken photos but have yet to have the energy to post them. I will - it will just take a bit.

- He brings me home flowers all the time - he knows I like to photograph them and since I don't get out except for Doctors appointments I have nothing to photograph. I sorta wish he wouldn't hand them to me and say: "Here - these are your 'I'm happy you didn't die flowers'" but actually I am rather glad he is happy - if I died - things would be ever so much easier on the poor man ...

I do like to photograph them though ... I do take multiple exposures (thus the tri-pod) to make HDR photos but have yet to get the energy to play around much ...

- Maybe one day I will be able to make it up to him - but I have no idea how.

Facing Your Fears

- Yes - I am terrified that I will start throwing up - knowing full well now that seizures are on the way. I take my blood pressure medication faithfully since they think it is the fluctuation, but I was on it before and I still had seizures - so I realize it is just a matter of time. It seems to be wearing me down and I really need to suck it up and stop living in fear of these abominable creatures that sneak into my body and take control ...

- Since I am no longer on Warfarin (blood thinners) I can start again with something that my doctor thought it was time for - a Pain Pump. It is surgically inserted and delivers a small amount of pain medication into your spine which is way better than taking huge doses by mouth. I was hoping there were other options and asked my Rheumatologist if there was anything and he said I was on such a high dose of morphine that was no longer working that I was 'out of options'.

I had an appointment with the surgeon that does the Pain Pump Trial yesterday and got all my questions out of the way. I don't know why I am so afraid of the entire procedure - yes there are a TON of risks but I truly am out of options and I have heard that it really will help my quality of life.

So Friday I head back to the Pain Clinic so they can insert a ginormous needle between T10 and T11 and inject some pain medicine in my spine to see how I do. They have said that there has been nobody that did not say this worked for them.

I then go back next week and schedule the surgery for a few weeks later and go from there. I hope it works. I told the surgeon (who will do the Friday procedure - another surgeon in a hospital will insert the Pain Pump and the catheter into my spine) that I wanted my life back - I wanted to travel and take photographs and I was not ready to be done. He smiled and said they would do their best to get me on my way ...

and I believed him.

The recovery from the surgery is dangerous and long but I know I can do it ...

Wish me luck ...