losing patience

I'm sitting here at the computer, two hours after my injection, with an "only now starting to dull" pain in my right arm. I am losing patience with my injections. I'm starting to crack.

I have an appointment with my MS doctor on October 22. As I understand it, this appointment is a sort of "check in/check up" on how I am doing, and in particular, how I am doing with my medication. I guess that you could also say that it checking in on how my medication is doing with me...is it doing what it is supposed to do?

Tonight I realized that I may not be able to go 21 more days without some official check-in, or words of medical experience and knowledge regarding my medication situation. You may remember that I was told at the beginning of my injections that the "uncomfortable reactions" would subside within 6 months.

I am at the beginning of week 30, and I must say, week 29 was the worst. I had four consecutive days of post injection pain and welts - four days, four different welts. The pain is difficult to describe - but I imagine that it is similar to having layers of skin torn off.

I'm thinking that I might phone the MS clinic tomorrow and let them know about my daily trials, and that I am at the point where I dread the needle. My body, and this foreign substance called Copaxone just can't get along. In the evening, I postpone getting out the icepack - I just don't want what follows. I did have a moment - September 16 - that I was finally pissed off with the situation, and announced to Jason that I did NOT want my needle that night.

After realizing that I should make the clinic aware of my pain, I started to doubt myself.

Am I just being a wimp? Is it really such a big deal? If the medication is working, are two hours of pain, in a day with twenty four hours, worth it? What if I stop the medication, and the next day would have been the day that it doesn't hurt anymore? What if the side effects from a different drug are worse?

Well, I'm off to bed...


a change to Emms' Bits

I have recently become aware that readers have made comments on some of my posts, and for some reason, I have not received them.

I don't know why this is, but I have made a change that may help. You will no longer have to enter the security letters in order to submit a comment.

I hope this helps!


a celebration of life

Jason, his dad, and I attended a "Celebration of Life" service this past Tuesday evening. A friend of Jason's passed away at the age of 26. Prior to his death, we understood that David was suffering from an inoperable, non-cancerous tumour in his brainstem.

Approximately one year ago, Jason and I ran into David at his place of work. As we strolled down the soup aisle at Sobey's, we heard,

"Hey Emily! Hey Jason!"

I raised my head (at this point in time I was walking around with my head down, watching every step) towards the voice, and had no idea who was standing in front of me.

"Hey Dave." Jason responded.

David and Jason had curled on the same curling team, and when not on the same team, at the same club. David proceeded to tell us how he had been sick lately with hydroencephalitis, and that he would be returning to his neurologist because he hadn't be feeling so hot for the past week.

So David and I exchanged neuro stories, and concluded that I was in a worse off position than he was. That would be the last time we would see David. David would enter the hospital shortly after that, and to my knowledge, not be out of some level of care facility for his remaining year.

We would receive phone calls from David, and get updates from various sources along the way. When David would call our house, looking to speak with Jason and I would answer the phone, he would always ask me how I was doing. He was quick to point out the advances in MS, and all the experimental drugs that are out there.

The celebration on Tuesday shed a bit more light on David's situation. He had been sick for some time: his mother told us that he in fact had a disease similar to the elephant man, but on the inside...neurofibromatosis*. The family was grateful to the neurologist who demanded prompt care for David two years ago, and thus extended David's life.

*1 in 4000 people suffer from NF-1 and 10% of those suffer from NF-2 With NF-2, masses grow in the central nervous system, in particular near and around the brainstem.

The Celebration of Life for David was void of any flowers, or large photos of David. From what I could see, there was neither an urn nor a casket. The church, however, did overflow with people. We had to watch the service from a live video feed in another room.

So you are probably wondering why I am choosing to share this with you. David was known for always asking you how YOU are doing. David himself was "as good as could be expected", but "how are you?" is what he wanted to know.

And on a day that was for celebrating the life of their son and brother, David's family, whom I have never met, asked me how I was doing..."You have MS, right?"

wow. We can learn so much from one another.


regarding the colour changes

You may have noticed that for a couple of days, Emms' Bits was a different colour...and now, it is somewhat back to what it had been.

This is not a reflection of my mood. It was originally designed as a seasonal colour change (have you noticed the trees outside?), but I was unable to achieve exactly what I wanted...so I switched it back.

That's all it is. No drama. No personality disorder. It was me not you.


the "new reality"

I have a lot on my mind lately, some positive things and other things that don't seem to fit into any category.

First off, just before Jason and I went to Kitchener, I sold a kitchen. Yes, the plastic surgeon resident coughed up some cash for a new kitchen. I have put in a lot of hours with this man, for many reasons: it's my job; it feels good to do something you both enjoy and know that you are good at; when completed, his condo will look fantastic in my portfolio; it got me out and about; and he gave me the name of the brand new MS Clinic doctor, before she even started working.

However, we were unable to nail down the final selections for his bathroom renovations, which will be completed at the same time as his kitchen. But I asked him to put the deposit down on his kitchen, and told him that I was going away and would continue working on his bathrooms when I returned.

Now here is the good part - I did not think about his bathrooms, I did not check my e-mail for messages from him, and I did not check for voice mails from him while I was in Kitchener. That is a huge step for me on my journey to a less-stress life.

I recently heard that the reason why many people with MS leave the workforce is because of fatigue. I know that I can be a stressed person - even enjoyable stress can be bad - stress is a fatigue trigger. I used to work whenever I felt like it or when I felt like I should because of the amount of work there was to complete - and I wouldn't necessarily count those hours for my pay cheque. I just did it.

When I return to work at the job where the precedent was set by the "other me" - I will be resetting the precedent to fit "my new reality". I have always taken my jobs personally: I deeply believe in the product, the service, and the people - I feel ownership - the pride, the fear, the craving for success as a whole - I am passionate. My career is a lifestyle.

Now I have promised myself and Jason a new lifestyle - a happy, healthy, me who will do whatever it takes to make my "medical reality" just a word. I choose to live with MS...not push my limits so that MS is my life.

I'm starting to realize that maybe life is better in this "new reality".

Taking it slow,


Leave it to a Fryer/Hamilton

Mom has made my blog again. This past Thursday, her and I went to the "Secondary Stroke Prevention Clinic" in Kitchener. The purpose of this clinic is to assess whether or not a person has had a stroke, and decide what measures can be taken to hopefully prevent another one. I was present as a "witness to the event".

What makes this blog worthy is that the doctor, a stroke specialist and neurologist, is not sure what happened or is happening to Ladyfingers. He is sending her for more tests in London, as well as an MRI and ECG.

When a doctor needs to make a diagnosis, all of the information that you can provide the doctor with is helpful...or so you would think. After he finished his neurological exam on mom (actually, he appeared to be torturing her), I thought that I should let him know about the tests that I performed on mom the evening of the "event" and the following day.

I told the doctor that I performed a "fine motor skills" test. I asked her to hold her hands out in front of her face and connect her thumb and index fingers in the shape of an "O", and repeat this action. She had difficulty executing this with her left hand. As the week went by, this action improved (and the subject kept practicing!).

So the doctor left the room to summarize his evaluation of Ladyfingers, and when he returned he looked at me and said, "So what is it that you do?". I replied, "I'm a kitchen designer". He sure didn't expect that one!

Ok - so the fact that mom has issues on both sides of her face, pain behind her left ear, and yes, decreased motor skills with her left hand means that she likely did not have a stroke. The combination of all these things at the same time is "interesting", and somewhat unique. So the more information the doctor had, the more difficult it became to diagnose.

Considering entering the medical profession,


P.S. Don't worry, I did tell the doctor that I have MS, and am therefore familiar with neurological testing.

kudos to me

I did it, I did it, I did it in a minute....

Last night, for the very first time, I gave myself my own injection in the arm. I have given myself my own injections in my stomach and my legs - but this was the first for my arm.

All I needed was the pending rush of a poker game...someone saying, "we can play a game if we get it going now"...the clanking of the poker chips...the cracking open of beverages...the cheking of cards...

Using a thesaurus,



Oh dear, I had that dream again. The one where I'm doing my old job as a server, in one of the restaurants, with the co-workers from another restaurant. Only this time in the dream, not only could I not keep up with the requests from the patrons, but I couldn't understand them! I was getting confused, forgetting processes, forgetting requests, and I wasn't clear myself!

I have had employment on my mind alot lately. I question whether or not I am ready to attempt a gradual return to work or if I should wait and speak with my MS doctor in October. I worry about my ability to do much of anything in my job that is waiting for me. I seem to have a number of options in the level of work I can choose to do at my job (so far, as set out by my employer) as well as the amount of pay I would receive (so far, as set out by my employer).

At a regular visit to my GP two weeks ago, he assumed that I would be applying for permanent disability anytime now...

Well at least I don't consider that an option, or I would only be more confused!



nickel and 2penny

Nickel (aka Ruth) showing us her scooter skills.

2penny (aka Rebeccah) and her birthday shirt

Whoa - these girls are busy! ... cute, comical, creative, and intelligent...

a couple of pictures

Subwaying with Andrea!

Hanging out with Richard!

I have tested my limits. I have done more in the past 3 days than I have done cumulatively in the past 15 months!

It all began with a plan to spend time with Andrea, something that we have not done since I moved to Winnipeg, and she had children. The plan was to go shopping and catch a Blue Jays game sometime while Jason and I are here in Kitchener.

Well...we have burned the plastic, tossed some chips, rode the rails, bought overpriced items at the Rogers Centre, power walked, and enjoyed real street-vendor BBQ!


Today, I will admit, is an off day for me. Off, in the sense that I am not taking on any out-of- home activities, nor am I doing anything mentally or physically strenuous because I woke up wobbly.

I made the decision to pack my schedule for three consecutive days because the personal fulfillment of the events far outweighed the consequences. The consequences of such planning is that I am now super sensitive to movement, and not thinking and concentrating as fluidly as I would like.

I have also been taking 2500 micro units of vitamin B12 daily. I started doing this on Monday, following the advice of a fellow person living with MS. She said that to a person with MS, B12 (injections in particular) is like speed.

Now this is not to say that no alterations were made to how I went about my business for the past three days. Care was taken to rest periodically, and avoid particular situations that I knew would be uncomfortable and "state altering" for me.

So I'm ending this post. As I type, I can feel my "state altering".


where did I get that from?

I'm sure that you are wondering how my mom is doing. We joke that this has become "Her Blog", written by me.

This morning when I approached the breakfast table, I could see immediately that mom's overall "aura" was a bit better. She looked awake, she had less of a droop in her lower lip, and her speech was clearer. However, as the day progressed, and she took on tasks, things went a bit down hill.

I know how this works myself. You can be good, as long as you preserve yourself: limited action, no deep thoughts, no discussions...but that isn't living very well.

I also woke up this morning, with my cousin Richard having spent the night here at the Palace (Lady Fingers and Batman's home). Richard is a cut-up; always looking for mischief, never fears shooting out a sarcastic retort, and calls it likes he sees it.

The interesting thing is, Richard is blind. Now, you may think that I am being insensitive, referring to my cousin as "blind", when I know that the politically correct term is "visually impaired". However, I decided to clarify these terms with Richard. I asked him point blank if he preferred to be called blind or visually impaired.

This was his response, "It doesn't matter to me, either way, I can't see. But I prefer blind, so then I can be as blind as a bat. It's no fun when you are as visually impaired as a bat."

Richard is 32 years old. From what I remember, and I accept corrections to this, Richard lost his sight when he was 3 years old. Richard also likes to make sure that people know that he has had 31 shunt-related surgeries (and none since 1998). If you ask him, he may claim that the deep, head disfiguring scars on his forehead are in fact from dueling swords.

Richard has suffered from more things in his life, too personal for me here. I decided to tell you about Richard, and my mom, as they are both people in my life that are inspirational to me, more now, than they ever were before. Their spirits are strong and beautiful - pushing through, playing the cards they have been dealt - determined to win.

And some people say that I get my "win at all costs" attitude from my dad...

Until next time,


this isn't an allergic reaction

ah, Ladyfingers did well through the airport security - she was with me.

However, she didn't fare too well today. Luckily, she was with me...ok, four of us were together: Jason, Dad, Mom and I went to lunch, on our way to The Home Depot to order a counter top. Near the end of our meal, Mom noticed that her left upper lip was numb, and she asked us if it looked funny.

Well, it wasn't her lip that looked funny, it was her speech that sounded funny. Her words were not clear, and she appeared to be confused. This alerted our group diagnosis to the possibility of a stroke, NOT an allergic reaction (which mom suffers from).

Recognizing this possibility, we quickly drove to the nearest hospital. With Jason behind the wheel, Dad gave directions from the backseat, and Mom sat quietly...which is quite strange. We decided that Dad and I would take Mom into the hospital, and Jason would return to the condo to retrieve Mom's purse. Yes, we were aware that we had left without her purse: I.D., Health Card, Epipen...

Anyhow, after being triaged, I followed Mom into her room, and Dad went outside to wait for Jason's return.

It was difficult to be with my mom in that situation. What do you say to someone when the doctor is performing neurological tests on her, and she has visible deficits? Mom believed that she was fine, and was asking me to confirm her beliefs...I just told her to do what the doctor asked of her, and not to worry about anything. I later found out, when relaying the story to Jason, that he was in my position last June when the same neurological tests were performed on me.

Ah Jason, I almost forgot his role...he got lost on his mission to retrieve mom's purse from the condo. Yup - the condo is not even five minutes from the hospital, and it's a straight run...no turns. Jason drove to Waterloo, and had to use the car compass to guide him back. He eventually returned to the hospital, with the purse...and a better sense of location. We all just assumed that he knew!

Anyway, the hospital released Ladyfingers - unable to determine if she had a mini stroke or a TIA, as neither of these are reflected in your blood or on a CT scan. She will now be tested by a stroke clinic. She has had a dramatic improvement since this afternoon...hopefully tomorrow the sparkle will be back in her eyes, and her smile will be straight.


Well, I made it through security at the Winnipeg Airport without a search, or even much of a fuss. Actually, I think that I achieved something that is so rare in a security situation - it deserves to be shared - with you.

I was so prepared for my journey through security. I had the following documentation with me: a letter from my doctor, a business card from the drug company (signed by the doctor), my official prescription receipt, and the write up that comes with prescription. Oh yes, and I had fifteen prefilled glass syringes, in a hard plastic case, packed in an insulated cooler bag, with two ice packs.

As I approached the conveyor, I pulled the insulated cooler bag out of my carry-on, and walked directly to the first of five security personnel behind the conveyor. I told her that the bag contained medication. She unzipped the bag, while asking if I had a letter from my doctor. She didn't open the hard plastic case, as I said "Yes, I have a letter right here", and pulled it from my bag. She didn't even look at the letter! She said to me in a low voice, "May I ask what the medication is for?" I responded in my direct tone, "I have MS". Her expression dropped, and she said, "Oh". She passed the bag along behind the X-Ray machine, and said something to the other security people.

Ok - I'll skip the small stuff. I proceeded through the metal detector, and went for my bags which were already at the end of the conveyor. To make a long story short, I was asked to open the cooler bag, and show the two personnel at the end my syringes.

One of the women asked me what the medication is for, and in my same direct tone, I said, "I have MS". The security man who was passing behind the two women stopped in his tracks, and returned to look at my syringes. All three of their faces dropped, and I heard two "oh"'s, as they slowly shook their heads. They admired the lock box that the needles were in, and said, "Who would want to steal these?". I responded with the monthly cost of the medication, and that I needed fifteen needles for my trip, as I need one needle per day.

They were in shock. They expressed emotion - sympathetic emotion.

Maybe I can change the world,


airport security

I'm taking a break from packing my bags. Jason and I, along with Lady Fingers, are leaving for Kitchener tomorrow morning. Usually, Jason and I "stage" our packing - placing items out for packing, one week prior to departure. This time, we did not do that. So far so good.

This will be the first time that I have flown (well, the flying part doesn't really matter, it's the getting through security) with my 15 pre-filled, glass syringes, that require refrigeration. I am someone that always flies through security - no questions, no searches - just a nod. For the first time, I will also be carrying the remainder of my medications in my carry-on luggage. We actually mailed some ahead of time, as they are samples from my doctor (I can't afford to have them filled, as they aren't covered by any drug plans).

I don't think that I will be flying through security tomorrow. However, Lady Fingers will be with us - and she ALWAYS gets held up at security...

I'm a snuggler, not a smuggler,


dropping a leg

I am in the 26th week of daily injections of my disease modifying drug, Copaxone. I inject in seven different places - in a seven day rotation. The reason for this rotation is to save my skin, and lower the risks of having permanent dents in my skin. nice.

My injections have been exceptionally painful from the beginning. I rate each injection on a scale of 1 -10, and keep track of the pain, and any reactions that I may have. I was told that because I have fair skin, I suffer from what the drug company calls "uncomfortable reactions", and that they typically subside in six months.

...22,23,24,25,26. Nope, the pain has not gotten any better. Actually, upon the advice of the drug company, I have "dropped a leg" out of the rotation, because my left thigh in particular gives me grief: welts, rash, intense pain. The pain is so bad that it makes me cry. I have to set aside a little less than an hour every night to ice the site, inject, (wipe up the tears) and ice it again.

My "personal nurse" from the drug company has a standard set of questions that she asks at certain parts along the "injection journey". The most frequent, and strangest question these days is, "What makes you go on with the injections?" Oh yeah, and "How do you do it (the injection) everynight?".




On Saturday, against the Tampa Rays, Alex Rodriguez's baseball bat was ordered confiscated by the opposing teams manager.

Now - this was done following the confiscation of a Tampa Rays bat - maybe a bit tit-for-tat.
However, A-Rod did hit a home run with said bat in a prior inning.


Imagining that I instigated this,


my job and plastic surgery

I don't think that I mentioned here that I had made an attempt at returning to work, only to step back at the beginning of July - with the full support of insurance company that pays my long term disability. I was to take this time, until mid September, to organize my life, and get a better handle on day to day living. At that time, I had started work with two of my own clients at work, and I wanted to finish working with them.

Well, it is now the first of September, and I am still working with one of those clients. I have invested alot of hours into spending his money, and creating a stylish and sexy showhome for him (he is only going to live in this condo for four years, and then he will be off to California, reinventing the highly sought after breasts of Hollywood). I have put in these hours for personal reasons (no, I don't want a boob job), I want fantastic photos for my portfolio.

While working with this single client, I have come to realize that returning to my job on a full time basis may be impossible. Realizing this, means that I have accepted that something happened to me in June of 2006, that has permanent repercussions.

I do often find myself in the middle of dangerous, negative self-talk regarding my future. I wish that I had an arm that doesn't move, instead of a brain that does not recognize and comprehend the visual clues around me (visual clues are transferred from my eyes to my brain and they tell me movement, direction, placement, speed etc).

I have never doubted my talents. But now I question my ability to use my talents in a fast paced, me-centric world - and make a decent living.

Thank goodness I don't need money for plastic surgery!

I am who I am,

Little bits about my life with MS

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