changes in the air

It's that time of year...the season is changing, the new school year is starting, the new television season is upon us...it's a time of change and welcoming new experiences. It's kind of like New Year's Day...starting over.

I am starting over, in my new official role as House Manager-Freelance Designer-Kittycat Masseuse. I received word that my long term disability will continue...no squabbles or questions asked...just periodic check-ins.

You may also be wondering what happened with BB. Let's just say that thanks to my recent medical trauma, I went out on my own terms...as I wanted. I'm at peace with this now...it was my decision, and I fully recognize* that I am not able to work.

I want to embrace my new role. I don't want to be a couch potato, or a bump in my bed. I have spent the past two years hanging around my house in sweat pants and old t-shirts. My other clothes are work clothes - dress pants and button down shirts. You may think this sounds superficial, but appropriate dress can make or break your attitiude, as well as your perception of yourself. Dress the part! On that note, I have found myself wanting a casual wardrobe. It's a bit like needing back to school clothes, or clothes for your new job.

Maybe I need to mandate a house uniform...

Emily

*at least this is how I feel today, and for most of this past week

just bits

I'm hanging in. My recovery isn't going as smooth as I had hoped. A burning sensation in my entire abdomen woke me up last night, and discomfort and pain continued today. I have a call into my surgeon...just to make sure that this is ok.

So on another note...

I am hoping to take part in the trial of an electronic Rebif injector. I don't know much about it right now, other than the company conducting the trial can't seem to get my e-mail address correct.

I'm pretty excited about possibly being a part of a trial...I always have an opinion! I guess in a small way, I'll feel like I am contributing to something. I'm not sure if I would ever be interested in a drug trial...those aren't numbers I'm sure I would want to contribute to.

Last on my list of bits for today...

Can you feel fall in the air? There seems to be a crispness in the air and in the breeze around here. I love the fall, not for the colours, but for the crisp air.

Ciao,

Emily

the best medicine

Get up and go...is what my brain had this morning. No fog. No fatigue. No wobbles. No sleepiness.

Yesterday, was not the same. But both days have been plagued by the continuing pain in my chest, a pain that has been present since before my surgery. My diaphragm has been injured by the abdomen infection. Breathing has become sensitive, sneezing is impossible.

I went to my GP doctor yesterday, to make sure that my lungs are clear and working to their full capacity. He ordered a chest x-ray and some blood tests...looking for a way to hopefully give me some breathing relief.

But don't worry too much about me...Jason and I spent a day with friends this week-end, enjoying the sun and surf...taking in some of the strongest medicine around.

The power of friends is often the best medicine to take.

You can take a friend anytime of day, with food or without, and alcohol is allowed...if you so desire. You don't have to struggle with opening a bottle or even swallowing the pill the bottle contains. Friends can make you drowsy, but it's worth it at the end of the day. A friend doesn't cost you money like other prescriptions do, and friends don't have expiry dates. The benefit of time spent with a friend can be seen immediately.

Emily

wobbles, rebif, olympics

This morning, my wobbles appeared (or re-appeared). Admittedly, I have a been a bit scared and worried that maybe things aren't so right in my stomach, as I have been experiencing some familiar pain and discomfort. I'm just not a "lay-low" and recuperate kind of person...I expect immediate results.

I also thought that I should mention, I haven't missed one Rebif injection through this whole circus. I think that if Jason wasn't as dedicated to my drug therapy as I am, I would have missed at least one shot. I even did at least one on my own....while reclining in my hospital bed. We never forgot which day of the week it was.

It's a shame that I have been under the weather for the duration of the Olympics. I haven't been able to share my thoughts with you! As you know, I am a proud Canadian...but these Canadian athletes who are happy to have done their best...falling short of the medal podium...really get under my skin!

Why don't they want to win a medal instead of just doing their best?!

Sometimes I am my mother's daughter...and sometimes I am my father's daughter.

Also a competitor,

Emily

the story continues

This is just a quick check-in...Jason thought that I should post to give you an update...I think that he should just do the post himself...

In a nutshell, I returned to a THIRD hospital on Friday Aug 8, with my gynecologist doctor expecting me, preparing for surgery on the 9th. What was supposed to be a surgery to drain an ovarian cyst, and remove some other "gyne" garbage, turned into a life saving measure.

At some point, likely when I was at one of the other two hospitals, my appendix ruptured.

My abdomen is an infected mess.

I got home from the hospital on August 15...and celebrated my 34th birthday yesterday.

Today, while trying to focus on the good, I realized that all of my MS symptoms have been kept at bay. I was only reminded of my MS when I had my Rebif injection on Friday. We hit a small vein, which is then always accompanied by 12 seconds of pain while the liquid goes in. The burning sensation was too much for me that day, having just returned from the hospital...

I'm tired.

Emily

not for the sensitive

I don't have anything good to type. I mentioned in the last post that something must be going on in my body, and I was right. I went to emergency via ambulance on Tuesday morning, and was released on Friday afternoon. My visit was not related to MS or MS symptoms, but rather excruciating pain in my abdomen.

From an MS perspective, I can say this: my heightened pain and discomfort did cause my balance to be more "off" (one step backwards before taking one step forwards...literally) Also, my already screwed up internal thermostat only goes even more awry when my body is confronted by pain.

From a family and friends perspective, I only surround myself with the best.

The medical system needs an overhaul.

I spent twenty five hours in the emergency room of hospital number one. The pain in my abdomen crippled me from moving within my little stretcher. I had blood tests, urine tests, a pelvic exam, and an abdominal CT Scan. I couldn't move without assistance or a tortured moan.

I would have spent three less hours in hospital number one had someone taken the time to examine the current situation...and not the simplified version of events. It was decided on Tuesday evening that I needed to see a surgeon...at a different hospital...and I would be transferred as soon as possible. In the meantime, another patient (a woman my age) entered the emergency (11 hours after me) who had swallowed a straight pin one week prior.

No matter how old, or experienced you think you are, don't put pins in your mouth!

She had the pin tracked by various doctors and clinics all week. When she entered the ER and they wheeled her into the spot beside me, she didn't have an IV, or any other cords and wires hooked up to her. She totally played the "innocent" card all night..."I don't want a pain killer." "How long will it take me to heal?" "It hurts to sit down".

The tracking of the straight pin (the little silver kind used in sewing) showed that at one point during the week the pin had descended and then ascended, and that night had ascended again and was sitting in her rectum. So when the night shift came on duty, you can hear the nurses passing on information...T3 (me) was being transferred at 7 am, and T4 (pinhead) was being transferred at 10am. I was getting morphine every 2 hours.

A few hours passed, (I forgot to mention that the transfer was supposed to happen that evening, but the other hospital was too busy) when I heard the same conversation again, but this time, the new voice said, "But she has a pin up her ass! She should go at 7!"

So I went at 10am. I had the same crew take me at that hour that took pinhead at 7...at 7, hospital number 2 was empty. At 10am, I waited in hospital number 2 emergency for four hours. They knew that I was coming...to see a surgeon. I didn't need to see an ER doctor. Why did I have to wait again? Where was my morphine? Where was a cloth to wipe my sweat? Where was the surgeon? Where was my bed?

By 2pm I was out of my wheelchair, and asking the triage nurse if the doctor knew EXACTLY where I was. I could only walk in a half upright position, with sweat pouring out of every pore in my body. He assured me that someone was on their way, and I assured him that I hadn't had any morphine in over four hours. I had also been NPO (nothing by mouth) since I arrived at hospital one 28 hours ago...except for a few ice chips...I discovered that my success rate depended on which nurse I asked.

For my three fourish hours in the wheelchair, in the hall, another poor individual also had four hours in a wheelchair, in the hall. He spent his hunched over, wretching up chucks, on 4-5 minute intervals. He didn't have an IV, and his mother could hardly ever find anyone to empty the puke. Even when they rolled him away (because they were scared that he was going to fall out of his chair) I had to ask the housekeeper to wipe up the remaining liquid. This guy needed a room.

Ok, let's cut this back to specific details. I eventually (around 2:30) got to see a resident surgeon. She quickly found an attending surgeon to look at me following her exam. I had an acute abdomen - a mass on my left ovary, difficulty breathing without pain, thickened lower bowel walls, fluid in and around the bowel, a distended and somewhat rigid belly. My blood pressure was high, my oxygen levels were low, and sometimes, I had a fever. I couldn't lower myself into a seated or laying position. I couldn't roll over, or get myself out of a seated or laying position. I could barely handle the light touch of the stethescope on my belly, let alone their prodding.

The surgeons were perplexed, and wanted the gynecologists to see me, before making any decisions. They had reviewed the films from hospital one with one of their own radiologists, who specializes in gynecology films, and concluded that there are a number of endometrias in my belly. Sometime after 4:30, I met with two gynecology residents...who wanted to send me for an immediate pelvic ultrasound.

I asked for some ativan and morphine before the procedure. Sure, I could have it as soon as I return, but right now, ultrasound is adamant that I be up with them now. Keep in mind, I'm crying, I'm moaning, I'm sweating bullets. There wasn't a nurse available to give me the drugs right then.

An ultrasound room is small, windowless cave. It is tight quarters, with dim lighting. A pelvic ultrasound involves the technician inserting a transducer (an instrument that resembles a microphone) into the female patients vagina to look at the bladder, ovaries, uterus, fallopian tubes etc. A short scan was also performed on the outside of my abdomen. This procedure awoke the hulk in me.

After the technician completed her images, she left the room, and returned with the radiologist...who performed the whole thing all over again!

"what does that look like?"
"does that look like a..."
"let's try that image again."
"tilt your pelvis up"

Near the end, I said that I couldn't take much more. I was becoming anxious and edgy. I was sweating profusely. I asked for a cool damp cloth. I asked if my gown could be undone. Then I said, I'm done! I felt as if I was boiling. I didn't know what was happening to me, or what would happen if I got too hot.

As I said, I'm done, the radiologist removed the transducer, she was done.

I shot off the stretcher, hitting the ground with my left foot...unaware of any pain. I cried for them to let me out, get me air. Jason tried to steady me, but he got too close. I shoved him away. Just sit back on the stretcher, Emily. Relax. Take off the gown, I cried. Open the door. Well they wouldn't open the door because it opened right into the waiting room, and I still didn't have my underwear on. I was crying, sweating, moaning. They were trying to make me decent so that they could open the door.

Following that procedure, I retured to the hallway ER. I waited a bit, and was met by another gynecology resident. They were finally prepared to admit me...after they performed a pelvic exam. Surgery was not looking like an option....if anyone were to open my belly, it would be messy, bloody, complicated, and a long ordeal.

I spent that night, all of Thursday, and Friday morning in a bed, in a semi-private room. I contined to be NPO until Thursday late afternoon. Water is even a restriction when you are NPO. I was offered release on Thursday late afternoon, but I declined. The thought was that they could just pull out my IV, and send me home with different oral pain medications. I nixed that idea...I wasn't leaving without a trial run first.

Everyone involved laid down my chart as a symbol of deferring my case to my vacationing gynecologist. My gyecologists partner paid me a visit, and it was his idea that I leave. The problem were all rooted in my endometriosis. He even cancelled the pending Gastro Intestinal consult that had been ordered on Wednesday.

So here is the thing - I don't pay for any of my time spent, or for procedures performed. But I shouldn't have had to endure such a long battle. This city has six hospitals, one urgent care hospital, and one "other" hospital. The city does not have doctors. The city does not have surgeons capable of abdomen consults at a busy hospital. Triage is a joke. The hospital that sent me to hospital number 2 is the same hospital that sent me home twenty five months ago, only to telephone 24 hours later in a panic....are your ok? you need to get here right away!

But here's a good thing....

My mom spoke to Jason, by hospital telephone, in the ER hallway at hospital number 2. Yes, you read that correctly. My mom called the hospital, knowing that I was headed there sometime that day, and searched me out. Her phone call made it to the nursing station directly across, 5 feet away, from my stretcher. She wanted to know what was going on, and she got to talk with Jason....sans run around. My mom has super powers to.

And on a funny note...

Following the rise of Emily the Hulk, I was in the hall with Jason and FIL (my father in law, Gilbert). I had had my hair back in a scrunchy, and it needed to be pulled back again, following my flip-out. A scrunchy, for those of you who don't know, is a casual fashion accessory for women's hair. It's an elastic, covered in a generous amount of secure fabric. It works like an elastic. With all of my over-heating, and sweating, keeping my hair off my neck is imperative.

I handed the scrunchy to Jason, and asked him to put my hair up. I noticed that Jason was struggling with the task. Then I noticed that FIL was also trying to help Jason. I could hear very low voices, almost like directions. I didn't notice the typical movement of the elastic...form a figure eight, move the eight bottom up to the root, form a figure eight, move the eight bottom....etc until the elastic is tight.

I raised my hands to my head and discovered that they were attempting to double-over the scrunchy...and push the hair through the hole created. I didn't even let them try it.

Anyhoo...

I'm home and in a lot of discomfort. I am taking pain medication every three hours. I can't bend over, and I can't take in a full breath. Thankfully, MS seems to be staying at bay.

I'll post again when I can,

Emily