Friday, December 30, 2011

Yay Christmas!

I know, Christmas has passed and it is almost the new year! But I wanted to at least write up a quick post about my Christmas.

It was great. The family got together and my Mom cooked a great meal.  We had lasagna, chicken wings, vegetables, etc.  All very delicious!

A few weeks prior to Christmas, I bought a new jacket. I sold my previous jacket on kijiji so that I could put the proceeds towards my new jacket.

Here I am in my old jacket.  These are pictures that I took specifically for kijiji:



Well, I didn't actually put that second pic up on kijiji, but you get the idea :P  The above jacket is the ever so popular tna jacket. It costs about $350 brand new, but the one I ended up selling was purchased used as well.  It is a great jacket, but it is a medium and is too big for me.  It has always been too big for me, so I figured I would just get rid of it and buy myself a new one.  It doesn't look particularly big on me in the pictures, especially in the first one, but that's because I have my hands in my pockets and am "pulling" the jacket back so that it is more snug against my body.

I like my jackets slightly "roomy" in case I want to wear a heavy sweater underneath.  I used to have a brand new tna jacket, but, as I may have mentioned in a post last winter, it, along with 2 of my other jackets (a bomber-style Danier leather jacket and a wool tna jacket) all went missing, likely to the Goodwill by accident of my Pops. *sad face*

So I bought myself a new jacket, a (size small) Canada Goose trillium jacket.  I plan to record a review of the jacket and put it up on my channel soon!  I ideally wanted a brown or navy one, but ended up getting it in black as it was more readily available in size small, the size that I wanted.  In retrospect, if I waited about two weeks, I would have found it in brown.  However there really wasn't any way of me knowing whether or not the jacket would become available, and these jackets are in high demand.  I'm quite happy with my black goose jacket now that I have it. It is incredibly warm and really nice. A friend of mine has this jacket in a different colour but in the same size.  She even suggested that I size down at it is a naturally roomy jacket, but I opted against that.  I have a bra size of 34D, and I was afraid that I would "suffocate" my chest if I got it too small! The small is just fine.



Now the reason I brought that up is because I asked my sister to give me money instead of giving me a Christmas gift because the Canada Goose jacket was rather pricey.  I already knew that my Mom and Dad would give me money. 

So, as expected, both of my parents got me cards with money in it.  What I found particularly funny was the fact that my sister gave me some cash and put it in the following envelope with the slogan for Scotiabank on it


I can always rely on my brother to get me a nice pair of sneakers for Christmas.  Last year he bought me a nice black and pink pair of Nikes that fetched me plenty of compliments.


This year, I got a new pair of Nikes! I really like them. I especially love the bottom of the shoes! The bottom of one shoe says "Just Do It", while the bottom of the other shoe says "Nike".  Love them!



My favourite hair braider also came to join us in the festivities.  It was a great time :)


I hope you all had a wonderful Christmas/holiday season.  Up next: New Years! :)

P.S. Here's a picture my Dad took of my legs/feet when I wasn't paying attention! Silly!


Wednesday, December 28, 2011

Merry Christmas/Happy Holidays!

Just wanted to take a quick moment and say Merry Christmas/Happy Holidays to everyone! Sorry I'm late!

I'll post a more informative Christmas post later! :)

Wednesday, December 21, 2011

Hip replacement scar: 4 Months Later

I thought I would share my hip replacement scar again as it looks today.  It has been about 4 months since my surgery :)

Sunday, December 18, 2011

Operation: Get me a kidney= back on!

I have a lot to be thankful for as the holiday season draws near.

The other day my transplant coordinator called me and let me know that the group of doctors (nephrologists) got together and finally discussed my case in regards to kidney transplant.

There was a lot for them to talk about and consider, including whether or not it was realistic and safe for me to go through with the transplant since this new smoldering myeloma diagnosis had thrown a wrench into my plans.  The doctors required additional information from my oncologist.  After much back and forth, they finally got all of the information they required in order to re-visit my case.

I'm happy to say that they have agreed and approved our plans to move forward with the kidney transplant.  I'm really happy about that. There has always been SOMETHING that has blocked me from getting this transplant and I'm glad that we are moving in the right direction.

The next move will be for me to have an appointment with the transplant nephrologist as I have not seen him in a couple of years.  Yup, I should have had a kidney a number of years ago if not for things continuously throwing these plans off track.  Hopefully THIS time will be the right time.  I may not get an appointment until January or so, but that's ok...let's just get this transplant done!

Another thing that I'm happy about is the fact that this one course that I am taking will soon be finished.  I have one more assignment to turn in (which I will begin to work on after I finish this blog post), then I have my final exam in the first few days of January.  After that, I'll finally be finished school.  All of the hours of studying for tests, exams, certification exams, doing assignments while juggling to maintain a proper home dialysis schedule...all of that will have finally paid off.

If it hadn't been for this transplant stuff, I'd have started applying for HR jobs within the company that I work for already.  My resume is on point...all I need to do is hit "submit!" But i know the second I do that..I'll go through all sorts of interview processes and such...and within my first week of work is when the transplant will be scheduled!! I'm trying to do what I feel is the "right" thing and wait before I start applying for HR jobs..but there is also something in me that's just like..."Live your life!"  We'll see.  I feel like I'm getting close to transplant.  If any delays should occur for ANY reason, I'm just going to apply for jobs.  I thought I was going to receive a transplant years ago.  Imagine if I put my life on hold all this time just waiting for it..?

Sunday, December 11, 2011

10 Answers to 10 Questions!

Answers to the 'randomest' things you've ever wanted to know about Miz Flow!


Saturday, December 10, 2011

Relationships and Chronic Illness

Check out my vlog on relationships/dating and chronic illness and tell me what your opinion is on the subject!

Wednesday, December 7, 2011

Food with Friends

I haven't been ignoring my blog...I swear.  I really just haven't had much to say.

My routine has been pretty simple for the past few weeks.  I've been going to work, relaxing at home, doing homework, etc.

Last week Monday was a pretty cool day.  I took the bus to work because my father, who would normally drive me to work, was out of the country.  So i took the bus, got off at my stop, and walked towards my building.  When I went through the doors and was in the lobby before the security doors, I saw my old childhood/neighborhood friend Kiko.  I knew he worked for the same company I worked at, but his location used to be downtown.  He had told me previously that his company had moved from downtown to my building. I still hadn't seen him in a few years, and it was just very coincidental and nice that I saw him in the lobby/security area.  I only managed to catch him there because he had forgotten his security pass and couldn't go any further without getting someone to sign him in.

I'm glad I caught him in the lobby, as we went for lunch together along with one of his co-workers to a place nearby.  It was a fried chicken place-the authentic kind.  Rice and peas..all that.  Delicious.

Anyhow..to be honest, I haven't much to say yet.  Still waiting on transplant stuff.  Just wanted to touch base :)

Monday, November 28, 2011

Busy!

I know I haven't posted in a little while.  I'm just starting to try and get back to normal. I've resumed going back to work for a few hours a week just to get my "feet wet".  It's really great.  I miss my co-workers. What I really miss is that feeling of being productive..you know?  That feeling of going out and doing your job and knowing that you did something productive that day.  I miss that.  I'm resisting the urge to just jump in with both feet and take too much on all at once.  It's really difficult for me.

In other news, I'm hoping that i'm slowly but surely inching closer and closer to transplant.  My oncologist has finally spoken to the transplant nephrologists about my case.  The transplant neprologists will get together later this week and discuss my case altogether.  This transplant has eluded me for too long..let's get on with it! :)

Friday, November 18, 2011

Up early for Nothing

Today was an early morning.  I woke up at 6:15 today so I could get to the hospital early.

My father was going out of town today, so he offered to drive me to the hospital for my appointment but I would need to take the bus home.  This worked out well for me since it was my plan to go and visit a friend in the dialysis unit.

After visiting with my friend, I went up to my appointment.  Much to my chagrin, the doctor's secretary told me that my appointment wasn't that day..it was the following Thursday.  The doctor wasn't even there!  What a terrible waste of time!

I went downstairs to the dialysis unit to check with the secretary there.  She showed me the email: it said the appointment was today.  Meh! Not impressed! (Georges St. Pierre voice).

The trip to the hospital wasn't a complete loss...I got to hang out with my friend while she dialyzed and I got to catch up with all of the nurses and hemo assistants that I haven't seen for a while.

Tuesday, November 15, 2011

Long Day

Today was a long and eventful day.

My day started out with a trip to my oncolgist.  I had to take the bus and subway today as I did not have a ride. My hip hurt a little, and my knee hurt a little bit more, but it wasn't bad.  My first stop was to the blood lab to get some blood work done prior to seeing the doctor. I waited for about 30 minutes for my number to be called.  When my number was called, I got up and collected my purse and a bag I was holding.  When I turned around, I saw another woman, who I had seen come in way after me, going towards the blood tech who had called the number out.  She was clearly trying to pull a "fast one" and take my spot as she did not see me picking up my stuff to walk over to the blood tech.  When he saw the woman walking towards him, he looked at my hospital card and said my name.  That's when the woman knew "the jig was up".  Nice try!

Whenever I have to go to the hospital for an appointment, I usually treat myself to Second Cup or Starbucks, and that was no different today.  I went to get my Starbucks and a quick bite to eat.  I knew I wouldn't have to rush that much.  I finally got my blood taken at around 10:00am, and my appointment time was 10:15.  This clinic usually runs slow...not to mention the time it might take for my blood work to come back.

So after I got my Starbucks and snack from Tim Hortons, I went to the hospital's pharmacy to order my aranesp so that it would be ready for pick up by the time my appointment was done.

I went to my appointment at the hospital across the street.  I sat down, drank my soy vanilla latte, ate my donut, and read the paper.  I knew I'd be waiting long so I might as well make myself comfortable. Much to my surprise, they called me in at around 10:45am.  Not a long wait at all.

When I saw the doctor, everything was fine. My hemoglobin was up to 111 (or 11.1) which is great, since it was 95 (or 9.5) two weeks ago.

After my appointment, I emailed my transplant coordinator Julie from my blackberry so we could meet up and chat. We chatted for about an hour.  It's always great chatting with her.

After this, I decided to get on the shuttle bus and head to twh, as it's closer to home.  When I got there and headed for the bus stop, I got outside just in time to see two women, and one of them looked like she just hit the ground! The first one was on the phone.  I was quite far away and I cannot run, so I walked towards them.  I asked the lady on the phone if everything was ok.  She smiled and said thank you.  I started to walk away...but I (obviously) didn't believe her when she said everything was ok.  So I came back and asked her if she needed somebody called.  She said yes. So I headed inside as did a security officer.  There were some doctors and other medical staffers in the food court, so we called them.  They dropped/abandoned their meals and ran outside.  One of them grabbed an oxygen tank and mask from who know's where and ran outside also.  In total, there were about 15 medical professionals who came outside.  As they began attending to the young lady on the ground (who I now assume is the other lady's daughter) I felt much better.  As the conversation continued, it became apparent that the young lady on the ground had some medical problems as well as perhaps developmental problems, and this was not an isolated incident-she had had a seizure.

Just then, the streetcar came.  I headed for the streetcar, especially since the medical staff was now with the young lady. I did not want the streetcar to leave without me, so I asked another gentleman who was in front of me to hold the streetcar for me, which he did.  Very nice!  He also offered me his seat. Double nice! I got to the subway, took my train to my nearest station, then headed to ground level to take another bus home.

So that was my day...aside from being pushed around by a man at ground level.  The bus was coming so he thought it would be a good idea to try and shove me out of the way so that he and his wife could get on the bus before me.  What the what??  I shoved him back with my elbow and did not allow him to get in front of me. He kind of squeezed his way to the front door of the bus, which meant he was going to get on the bus before me if the bus stopped in it's usual spot.  Luckily for me, the bus driver opened the back door as there was a ttc employee at the back of the bus waiting to see our passes in order to let us in.  So I ended up getting a seat anyways. Some people!

Well, that was my day.  Crazy, huh?

Up for tomorrow-Work telephone conference call and a dialysis tech will visit my house for a special disinfection of my machine.

Sunday, November 13, 2011

Random Bruise

Ouch!

Sleepless Nights

Sleepless nights.  I've had a lot of those lately.

I just have so many things going through my head that I often find it difficult to sleep.  The end of my college career is drawing near, which means it'll be time to start job searching.  In fact, as I wait to go back to work now that my hip is getting better, I've been looking at the job postings at my work...basically just to see what's out there.

I'm afraid that I won't be able to keep up with a full time job.  I'm afraid that I'll get too tired, or I'll get sick..or the chore of doing dialysis all the time coupled with going to work will zap the energy out of me.  I'm quite lucky in that I have a wonderful and supportive family who helps me out a lot.  But eventually..I imagine that I'm going to have to get to a point where I'm self sufficient. That scares me.

But, my thoughts that have been causing me these sleepless nights go even deeper than just my future career.  First and foremost...it's my health.  The transplant team is still in talks with my oncologist in regards to my potential transplant.  The transplant nephrologist has emailed my oncologist a couple of times but she has not answered him yet.  I imagine she is quite backlogged as she was away for a week or two.  Luckily I'm seeing her this week for a follow up appointment so I'll be able to talk to her then.

I guess one of the main concerns the transplant team has is the potential repercussions of the transplant medication I'll have to take after I receive a kidney.  Some of those medications could possibly trigger or "activate" my currently "smoldering" myeloma.  If it does...then that's a whole new set of problems that I'd have to deal with.

So what do I do?  Forget about a transplant altogether because of the slightly increased risk of triggering these myeloma symptoms? If I do that...I'm just being honest here...I'd be pretty miserable.  Don't get me wrong- in spite of the work that goes into setting up, stripping, and maintaining a dialysis machine, it's much better to me than the alternative, which is going to the hospital for treatment.  I don't think I can do that anymore. At the same time, I feel like I have a ball and chain attached to my ankle.

I've missed out on a lot in terms of vacationing with friends and such because of dialysis.  The last thing I want to do is inconvenience my friends by having them drive me to dialysis units in different countries.  What's more...It can be scary going to outside dialysis units.  Every unit has their own way of doing things...and their ways may not be something that I'm used to. And what's more...whenever I do "in-centre" dialysis, I'm pretty drained afterwards.  I'd have to go back to the hotel, eat, and take a nap.  I don't want to put that on anyone.  Not to mention..dialysis in a different country is pretty expensive.  When I went to Florida once...I got a "deal".  I paid $300 per dialysis session. The actual cost was more than $600 USD per dialysis session.  OHIP only reimburses $210 CAD.  It's a huge cost to bare in my opinion.

In spite of the risk...having a kidney transplant is something that I want.  I've young...and I kind of feel like I've lost a part of me in terms of the carefree person I used to be.  Bike riding for hours on end throughout the city with my brother and his friends or me and my friends...as I mentioned before, hitting up vacation spots...I've never been able to experience one of those "let's just go to Montreal for the weekend" or "let's go to the States for the weekend to shop" adventures...

I just want everything to be..."right", you know? It's been so long that I'm not even sure exactly what that is.  All I know is that my "right" does not include being hooked up to a dialysis machine for 40 hours a week.

I don't even know if what I'm writing is making sense anymore, so I think I'm going to lie down and try to get some shut eye.  I hope I can.

Thursday, November 10, 2011

Notice anything new about my blog?

Yes, my new blog design is finally complete.  I'm pretty happy with the results.  There are still a couple of "tweaks" here and there that need to be done, but other than that, it's done.  What do you think?

Free from Physio?

It's been a short while since I updated!  I've had a nagging stomach ache for about the last week that I just can't seem to shake!  I went to physiotherapy this morning.  My mother dropped me off and picked me up too.  After physiotherapy, we went to Walmart.  Much to my delight, peppermint tea was on sale.  I've been told before that Peppermint tea is good for an upset stomach...so I'll give it a try.

Speaking of Physiotherapy, I saw my ortho surgeon last week.  He assessed me and said that I do not need physiotherapy anymore! Yay! But wait...didn't I just say that I went to physiotherapy today??

Let's be honest..I don't feel like you can ever have TOO much physiotherapy if it is still being beneficial and you are not hurting yourself.  I've gone to workout classes for this first time this week.  I've done two classes. They are difficult since I have literally zero muscle in my legs.  The class is half an hour with exercises that involve both sitting down and standing up.  I feel a bit of pressure to keep up...since the next youngest person after me is probably 55-60 years old!  But then...it's almost like having a personal trainer. Having a personal trainer motivates you to push yourself to your limits..and this class does too.  I'll probably go another couple of times before I stop.

I think the time for another vlog is creeping up.  Hopefully I can get over this darned stomach ache soon so I can make one!

Wednesday, October 26, 2011

Vlog- Colon Issues

So!  It's been almost two weeks since I uploaded my first vlog.  I did another one this afternoon and you can watch it below.  I decided to do a bit of a "series" where I will discuss things that I have experienced that were not specifically kidney related as there are a few.

The video below is about the time I ended up with a perforated colon/abdominal vasculitis.

Tell me what you think! :)

Coughs and Colds!

Yep, it's that time of the year...I have a cough and a cold/runny nose.  It's not too bad anymore.  Yesterday I didn't even want to exert the energy needed to lift the remote and change the channel.  My dad bought me some cough syrup so that surely helped.  My dad also made me a facial mask with lemon and organic honey.  I put a drop of peppermint essential oil into the mask and put it all over my face.  The peppermint really seemed to help with my sinuses and just made everything feel nice and tingly.  I hope that I'll be much better in time for the weekend.  I'm gonna check out my bro's digs for the first time.

Every time I get a cold, I am reminded of that horrible, horrible ear infection that I had a in January 2009.  I'm telling you...I've never been the same after that.  It was the first time ever having an ear infection (it was in both ears) and I was beyond miserable.  Hmm..if only the doctor that I begged and pleaded with to relieve me of this pain believed me (he was a fellow and not my regular doctor, btw).  I still see him around the hospital and I give him some heavy duty side-eye.  When I begged him for help, it was a Friday.  If he had only listened to me and believed me when I said that I am NOT having severe head and face pain due to my hemoglobin being low (i was getting a blood transfusion at the time), I wouldn't have had to suffer throughout the weekend without any antibiotics.  When I went back to the hospital on the Monday, barely able to walk straight/properly because of the ear infection, one of the actual unit doctors saw me and right away knew that I needed antibiotics.  Arghh!  Anyways, I've told that story before and will tell it again in a vlog.

Here's to hoping I get over this cold soon so I can hit up physiotherapy tomorrow, see my bro's new place on the weekend, get cleared by my ortho surgeon on Tuesday, and hopefully soon head back to work!

Saturday, October 22, 2011

First Vlog Afternath

I must say...I am very surprised, happy, and humbled by the response that I have gotten from my first vlog.  I've gotten a lot of positive feedback from many people.

I watch youtube videos all the time for various reasons.  I started watching hair videos on youtube just over a year ago after I had taken a weave out and suffered a ton of breakage, especially at the nape of my head.  I watched youtube videos for tips and information on how I could nurture my hair back to health. The videos I watched were helpful, easy to understand, and full of useful information. It was through the aid of these videos that I was able to achieve this goal:


After watching some youtubers speak to the camera with ease, I never imagined that it would be difficult for me to do the same thing.  It was easy in that I knew that it was something I wanted to do and I am glad that I did it, but what I did not realize was how difficult it would be to speak to the camera with the ease amd poise that some of the youtubers I have watched do.  I suppose this comfort behind the camera will come with practice!

I look forward to making my next video.  I have a lot of ideas in my head of different topics I want to discuss. I can't wait to record, edit, and upload my next video.  Again, thank you so much for all of your kind and encouraging words!

I miss my old Rheumy

The other day was my first rheumy appointment with the doctor taking over for my previous rheumatologist.  I almost always have mixed feelings when I have to see a new doctor. It worries me when someone that I am not familiar with wants to make changes to my "regular" routine.

Anyhow, I went to my clinic appointment today and say the fellow first.  We discussed everything that needed to be discussed, including my hip replacement, kidney transplant, etc.  After the fellow examined me, he left to go and get the doctor.

Much to my chagrin, my new doctor was doing a presentation or something elsewhere and was unable to come and meet me for the first time.  He did, however, tell the fellow that he felt that it was unnecessary for me to remain on the drug mycophenalte mofetil (cellcept).  The fellow explained that this medication is meant to help the kidneys, and since I am on dialysis, it is essentially redundant for me to take it.

Don't get me wrong; whenever I can remove a medication from my repertoire, I'm all about it...ESPECIALLY cellcept.  It's the most expensive drug I take and it gives me the most trouble to receive money back when it comes to receiving reimbursement for it.  But I guess what I find worrisome is the fact that a doctor wants to stop this medication so quickly and (in my opinion..I could be wrong) without a THOROUGH investigation/review of my chart.  My previous rheumy is a very smart and reasonable doctor who knows me very well.  I think that if it were in my best interest to stop this drug, he would have recommended it (or at least suggested it).

I've said it once and I'll say it again.  The weeks just prior to me having to start dialysis all over again in 2004..I was being discharged from the hospital.  A doctor that I had never met before came in and told me to stop taking a bunch of medication that I was on.  At the time..I was thrilled!  Less medication must mean that I'm getting better!  He told me to stop taking furosemide, rampril...and a few others.  He said that they weren't "good for my kidney".  I found this odd, because I had been taking these medications for several years and I seemed to be fine for all of those years (more or less).  It also seemed...strange that doctors would have prescribed all of these different medications to me if they were supposed to be "bad for my kidneys".  Long story short...I stopped taking those medications and was once again in complete renal failure about 2 weeks later.  So as you can imagine, I'm hesitant to just "stop" taking things, especially when someone I am not familiar with is the one who suggests it.

Anyhow, my answer to this was that I wasn't going to stop taking this medication...at least not yet.  I emailed my old doctor to see what his opinion is.  I hope he responds.  I have my transplant coordinator Julie working hard to get me my transplant.  I don't want to do anything that'll make me sick and put my transplant on hold yet again...!

Other than that, at the moment, my hemoglobin is 105! (or 10.5).  Yay!!

Friday, October 14, 2011

My First Video!

So I promised that I'd create a video on my youtube channel...and I did!

Tell me what you think.  And yes, I know that I say "you know" a lot...I'm gonna work on that ;)

Thanks :)

Thursday, October 13, 2011

Physio tomorrow

Tomorrow will be my second physiotherapy session.  Oddly, I'm looking forward to it.  Well, perhaps it isn't overly odd, but I do want to go. Not necessarily because I love doing physiotherapy, but because I just look forward to getting out of the house as I have spent most of my time here as of late.

I'm limited in terms of going out and stuff because I do not want to overdo it.  In my desperation and desire to simply get out of the house, last Sunday I went to a local Sally's beauty supply...just to buy some hair pins that I wanted.  After that, I went to the post office to pick up a package.  I took the bus.  Taking the bus wasn't too bad as I luckily encountered some very polite and courteous people.  One bus driver actually held my hand so that I could sit down when I got on the bus, and he held my hand when it was time for me to get off the bus.  I was pleasantly surprised with that as he totally didn't have to do that...but I wasn't complaining! :)

I'm not feeling the greatest today. It's bad enough when you're not feeling well...but when stuff starts happening to you outside of you not feeling well...it's just a recipe for a bad day.  For example, I went downstairs to the kitchen to try and get myself something to eat as I needed to take my medication.  When I picked up the plate I wanted to use...another plate went crashing to the ground.  I guess the bright side of that is the fact that the plate didn't fall on my foot..nor did break in to a million pieces.  I picked up the 5 or 6 pieces, nearly in tears, and retreated to my room to eat breakfast.

I ate, took my meds, and relaxed a bit.  I went to use the washroom that is in my room...and lo and behold..the toilet won't flush.  Why, why, why me!  Bright side? Well, at least the toilet simply didn't flush as opposed to it flooding/overflowing.  Yep, I guess.

I called my Dad and told him what had happened.  This had happened a few months before: there is something in the tank of the toilet that is broken.  My dad fixed it on a temporary basis, but since it worked just fine for a number of months, I think the more permanent solution slipped his mind. My dad told me that if I lift the lid off of the tank and push or pull or do something, I can make the toilet flush.  I opened the tank (hunched over from my stomach ache, mind you) and couldn't find what he wanted me to push (or pull).  So I grabbed my new video camera, made a video, and will email it to my father for further instruction. (and oh yes, I can't wait to make some vlog videos to post on my blog!).

So that's all for now.  My video is done uploading to youtube, so now it's time for me to send it to Dad for further instruction. Oh, and don't go looking for the video on my youtube channel- I made it private and only those with the link for the video can watch it :P

Sunday, October 9, 2011

Scar 2 months post op

Here is a picture of my scar at just about 2 months post op. I think the scar looks great. Great job by my surgeon! :D

-Florence T.
Sent from my BlackBerry device on the Rogers Wireless Network

Friday, October 7, 2011

Outpatient Physiotherapy

I guess you can say that the highlight of my day was going to physiotherapy.  Well, here's how that went.

I got there promptly at 12:55pm for my 1pm appointment.  I got there a little later than I would have liked, knowing that I'd have to fill out forms and such.  I went into the building for the first time and scanned my surroundings.  There was an unlabeled door to my left. I looked in front of me and saw a flight of stairs.  At the top of that flight of stairs, which led to another flight of stairs, was a sign that said "physiotherapy, sports injury, etc. 2nd Floor". I was puzzled to see two flights of stairs leading up to the clinic...with no elevator.  Shouldn't the clinic either be on the first floor or shouldn't there be an elevator?  What if someone comes in and is seriously injured?  How are they supposed to get up there?

Anyhow, I slowly went up the stairs of the old-fashioned building.  This second floor had a series of doors.  The first one I saw said "physiotherapy".  I went to open the door...but it was locked.  I looked at the door and there was a sign that stated that they were closed from 12pm-1pm for lunch.  Hmph.

I sat down on a nearby chair and waited.  After about 1 minute, someone who looked like a janitor asked if I needed help.  I told him that I was there for physiotherapy. He told me I was on the wrong floor. Just as I suspected...that unlabeled door is actually where I should have went.  So, I slowly limped my way back down the stairs.

When I arrived, I paid the assessment fee and filled out the appropriate forms.  I sat down and waited until about 1:25pm before being called in. Wasn't my appointment supposed to be for 1pm?

Anyhow, an older gentleman (maybe in is 60s) was the physiotherapist.  He was very kind and asked me various questions.  As I expected, he declared that I was much too young to have to go through all of these things that I had methodically listed on the information form that I had filled out earlier.  I agreed.

I'm not gonna lie...this physiotherapist made me slightly uncomfortable.  I dunno, just the idea of having him touch my hip and stuff.  Nothing seemed inappropriate, as I know that I'd have no issues if it was a female (or even perhaps a younger man), but it was still weird for me.  Heck, a couple of weeks before my surgery I went for a full body massage given to me by a woman and I had zero issues with that!  But you know what I mean. I heard him communicating with the other patients and it seems that he's just a really friendly guy.

He started of by testing the strength in my hip by having me sit down and push down on his hand with my foot and push up on his hand with my knee.  He said that my level of strength in my hip was good.  After that, I lied down on the exam table/bed while an assistant came in and put a tens unit and an ice pack on my hip.  That stayed on for 15 minutes.  After that, the physiotherapist (let's call him Bill) came in and put some sort of oil or something on my hip.  I was then directed to do some strengthening exercises while still lying down.  After I did the first set, Bill asked me for the paper that showed the exercises that I had been doing since surgery was complete. After this, he put an ankle weight on my ankle and a rolled up towel under my left knee.  From there I straightened my leg, lifting the heel of my left foot off of the table/bed.  I have been doing this exercise at home, but not with the weight on my ankle.  This definitely upped the difficulty.

After this, I put my pants back on and went to sign for my therapy.  Bill told me to come back next week.  We would progressively increase the strength in my hip and eventually get to more difficult things.

After that, I waited for my cab and that was that.  

So I do look forward to getting my full mobility back.  I hope these physiotherapy sessions will up the strength soon.  

Next on my list...transplant.

Thursday, October 6, 2011

Outpatient Physiotherapy coming up

My in-house physiotherapy sessions have ended.  I feel much more stable now that it has been almost 8 weeks since my surgery.

What I can say is that I do still feel a little apprehensive about putting my full weight my hip when it comes to stairs and stuff.  I can go upstairs and downstairs just fine, but as advised by my surgeon, I only go one step at a time (go up with the good leg on step at a time, down with the bad leg one step at a time).   But I do sometimes find myself accidentally trying to go up or down the stairs normally...and I catch myself.  i'm quite nervous that I'm going to fall or dislocate something.  It's almost reminds me of when I was still in the hospital and about to take my first few steps.  I was walking...but I would "limp" when I stepped on my left leg...almost as if I wanted to put as little pressure on the hip as possible.  Even though the physiotherapists told me not to limp and to put full pressure on the leg...I was still nervous.  It took a few moments for me to realize that these physiotherapists must know what they're talking about since they do this everyday!

Tomorrow will be my first outpatient physiotherapy session.  I'll be going to a nearby physio clinic.  I told my parents about my plans-they are both on vacation overseas.  My father told me to make sure that I make sure the physiotherapists know my limitations and not to push myself. I have to admit...he's right.  When my in-house physiotherapist wanted me to do an exercise that involved me doing a squat, and another one that had me lie down on my (good) side and do leg lifts...I had to draw the line.  The squat wasn't happening because my right knee hurts and is going to need to eventually be replaced as well...and the leg lifts were just...well...painful..!

I do look forward to having my hip up to 100% and I look forward to my physio appointment tomorrow...which will likely be more of an assessment period.  Wish me luck! :)

Thursday, September 22, 2011

Update!

I know, it's been a long time since I've updated.  I'm sorry!

My bionic hip is coming along nicely.  The last pic I took of the bump was about a week ago...and to be honest I don't feel like stripping my pants off to take a new picture.  The hematoma is still there, but considerably smaller. It also doesn't hurt, and that's always good.


I went to see both my ortho surgeon and my oncologist today.  My ortho looked at the x-rays I did while in Emerg earlier this month and said everything looked fine.  He also said the hematoma as well as the scar are both looking good.  I will see him again in November.  But for now, I'm allowed to walk around my house without a cane.  I will keep up with the physio and eventually move on to out-patient physio.  When I walk without my cane, I still limp a bit.  My ortho said that this was normal and that would eventually go away.  After all, it has only been about a month since I had the surgery. Below is a picture of my x-ray.  Kinda cool looking I think.


When I saw the oncologist, I definitely got some good news.  The oncologist told me that when I had the hip replacement surgery done, the bone that was removed was sent off to the lab to be tested. Considering the fact that there is much myeloma talk about my bone marrow and such, I felt that this was an excellent idea. I actually had no idea that this had been done or that they were even thinking of doing that until my oncologist mentioned it.  She went on to tell me that the bone was completely clear of any abnormalities.  Excellent news.

She also told me that my blood work was steady-no major changes.  Also great news.  She said that she would have no problem with me going ahead with the kidney transplant. Of course, it's necessary for all of us who are involved to know what the risks are in terms of whether these abnormal cells do turn into something other than just a "smoldering myeloma".  But she is confident about the available treatments for myeloma should they be necessary, and she does not feel that they would interfere with my kidney transplant.  Great news!

The first thing I did was bbm my brother to tell him the great news. He's just as anxious to donate his kidney to me as I am to receive it.  He was pleased to hear the news.

After these appointments, myself and my father met up with Julie, my transplant coordinator.  We had already planned to meet for coffee previously.  I was happy and excited to share my news with her.  She told me that once my oncologist's report comes through, the transplant team would review all of my information and make a decision about transplant.  That might take a week or two.  That doesn't bother me too much as I am still recovering from the hip replacement surgery anyways.  All I know is that I am stupid excited about hopefully getting this transplant done.

I hope this time is my time.

Friday, September 9, 2011

Hematoma today

It's still the same size :/

-Florence T.
Sent from my BlackBerry device on the Rogers Wireless Network

Hematoma Madness!

So of course my recovery from hip replacement surgery couldn't just be...."smooth".  Nope.

Two days before this incident, I took a picture of my thigh.  It looks fine here, but in retrospect, I can kinda see a bump forming on my thigh below the steri-strips.  Take into account that I have ZERO hips.



On labour day, my father and I went out for breakfast.  When I woke up that day, I noticed a small bump on my leg below the incision.  Nothing major-barely noticeable. So Dad and I went out for breakfast, and then to the mall.  Dad wheeled me around in the wheelchair.

When we got home, I got into bed and started doing some homework. My brother had come over for a visit and was in my room.  When he was there, I happened to glance at my leg again.  The bump was bigger.  I asked my brother, who was at least 6 feet away from me, if he could see the bump on my thigh.  He said that he could.  He suggested that it was perhaps just my leg healing.  When he left, I decided to take a picture of the bump.


I told my Dad about it and showed the bump to him.  We both decided that we should have a medical professional look at it, so Dad called my uncle (ER Nurse who also removed my staples) to take a look.  My uncle got to my house in about 20 minutes.

After examining the bump, he said that he felt that it was a hematoma.  It being labour day and after 6pm, he suggested that I go to get it checked out the following day.  I agreed.

Shortly after my uncle left, the bump REALLY started to hurt.  My mom wondered if it was because the bump had just been poked and prodded for the last half an hour.  I didn't know...all  I knew was that it hurt.  I took another picture and compared the two.  The bump had gotten noticeably larger.

That's it...we're going to emerg..now.

When Dad and I got there, it was quite (and shockingly) empty.  I got called in after about 5 minutes.  When the doctor finally looked at it, she agreed that she thought it might be a hematoma, but would need to do an ultrasound to confirm.  Unfortunately, there were no ultrasound techs available that day so I'd have to come back tomorrow.  She put my name in the book for 9am.  A transporter came to wheel me to x-ray.

When I got to x-ray, the two x-ray techs had me bend and pose in uncomfortable and down right painful ways.  I was on the brink of tears as the transporter wheeled me back to my space in the ER.  I was paralyzed with pain.  The doctor, who had already authorized a 1mg pill of morphine, told the nurse to give me another dose as I was clearly still in pain. I received the second dose (it didn't help either).

The doctor gave us a prescription for more morphine and sent us on our way to return in the morning.  Thankfully the pharmacy was open and I was able to get the medication.  Unthankfully...the medication did nothing for me and I whimpered in pain all night.

The following day, my sister took me back to emergency.  I had the ultrasound done by the tech.  A doctor came in moments later to look himself.  He asked me if I had had any trauma to the area, such as a fall, a bump,etc.  I hadn't.  He found it odd that such a hematoma would appear without trauma.  *shrugs*.

Back to emergency now.  The doctor saw me and wanted to do blood work.  I was sitting in the ER hallway when a nurse came up to me with tubes and a needle, ready to draw blood.  I asked her if she planned on drawing the blood right here in the hallway and she said yes.  "Interesting..." I said, as I found it odd to draw blood in the middle of a hallway with tons of people scurrying about.  My sister piped up and stated that it would be preferable if we could take the blood in the adjacent EMPTY room. "Uh..sure.  If that's what you want" the nurse said.  Oh brother.

Anyhow, in the meantime, the ER Doctor called the ortho doctor.  When the ortho doctor (Andrew) came in, he looked at my thigh and said he was going to speak to my surgeon.  He returned shortly after and said he was going to have my take anti-inflammatory pills.  He also gave me 2 oxycodone pills as well as a prescription.  These pills definitely helped with the pain.  He said that if the swelling did not go down after a couple of days, I should come back.  He said that he did not want to tap the hematoma right away, as infection is always a concern when it comes to tapping.  I kinda wish they would tap it-just get all the junk outta there and let's go!

The following day, the bump looked more or less the same, and it still looks the same today.  I'm hoping the anti-inflammatory drugs kick in soon.


I will keep you posted about my hematoma madness!

Thursday, August 25, 2011

My hip is bionic!

Hello all,

Sorry for the delay in posting this very important update.  But I do appreciate all of the well wishes I received via my blog and via twitter.

So yes, I have a new titanium hip!  I went in for surgery on Aug 17 (Wednesday) and got home on Aug 22 (Monday).

I got to the hospital at around 6:30am.  I checked in and then sat in the waiting room for about 10 minutes.  I was then called in to put on my hospital garb.

I had my vital signs checked, including my blood pressure, temperature, etc.  I then went into another room with my father and waited to be seen by the anesthesiologist.  He went over all of the pertinent info, including the fact that I'd be receiving a nerve block (aka big scary needle in my back!) I was scared...I don't like needles in by back!  (Though I'm clearly okay with shoving large needles into my own arm haha).

Shortly afterwards, I kissed my Dad goodbye and it was off to the "room before the OR" room.  I walked there with the anesthesiologist.  It was a long walk...maybe 2 minutes.  I joked to him that the walk was quite long and I felt as though I was headed to the electric chair.  He laughed and said "kinda like the Green Mile, huh?"  And I said "yeah, dead woman walking!"  He laughed and said he was thinking the same thing but did not know if he should make such a joke since he didn't know my sense of humour.  We both laughed at ourselves and each other's crude sense of humour.

I went to the room before the room and the anesthesiologist put the IV into my hand.  I must say that I'm a big fan of having anesthesiologists putting IVs into my hand.  They're quite good at it and never miss.  Well done.

Soon after, I found myself putting my face into a contraption similar to one that you'd put your face in if you were having a "sit down" massage.  The nerve block was put in and there was little pain.

I was taken to the OR and greeted by nurses and my doctor/surgeon.  I laid down on the bed and made it clear that I wanted to be completely knocked out.  Soon...darkness.

I woke up and heard what sounded like a chisel and a hammer on a piece of stone.  I looked down and saw a big green cloth blocking my vision to my hip.  Yep, the surgery was still going on.  I was not in pain, but I felt it necessary to make it known that I was awake and unhappy about it.  I said "ow.".  Then soon after...darkness again.

What happened afterwards is a bit of a blur.  I went to the "room after the room" and was taken care of by a nurse.  She asked me to wiggle my toes.  I was only able to wiggle the toes on my un-operated leg,  She told me I was doing well and I was soon taken to my room.  Much to my surprise (and delight) I was taken to a private room.  This is probably because I would need dialysis and it would be much more convenient to be in my own room vs. share with someone else.

My dad was there and I was happy about that.  I looked to my right and saw my PCA pump (patient controlled analgesia). I used it.  I was allowed to use it every 5 minutes.  I later found out that there was a kink in my line and I wasn't getting ANY of the morphone...but when the line was un-kinked, I DID get a large dose (22 hours worth) of drugs.  Let's just say I was high for about 24 hours.


The first bandage on my hip seemed to be a pressure bandage in order to ensure that there was no bleeding/leakage.


I had lots of visitors and that was nice.  Having the private room was especially nice since I knew that I was not disturbing my next door neighbour.



 I actually wanted to document a lot of my surgery via video, but the camera I've been waiting for samsung to send me a pocket cam to replace a defective one.  I first sent them my defective device in mid June.  Well..let's just say that I don't have a camera yet.

Anyhow,  after a couple of days, my pressure-typed bandage was changed to a regular gauze bandage that wasn't as bulky.



I had the PCA removed and used a lot of oral pain killers.

 This breathing apparatus helped me to practice taking deep breaths.  I was told why this is very important, but unfortunately I cannot remember.


I'm at home now and I'm adjusting to the whole "not being able to walk" thing.  Well, I can walk but I have to use a walker to walk, and a cane to go up and down stairs.  I use my cane in my room as it is much to small to use a walker to get anywhere.  My staples are supposed to come out next week Wednesday, which would mark the 14th day since my surgery.  I am going to make sure that THEY make sure that the staples have been in long enough.  I don't want/need my leg popping in like my stomach did when THOSE staples were removed too early.  But the person who will be removing them will either be a close family friend (i refer to him as my uncle) who is a very experienced ER nurse, or I will head to my family doctor to have him remove them.

The next pic is of my staples in my leg.  It doesn't look gross to me, but if you are sensitive, perhaps scroll quickly and pass this picture.

There are other stories to tell, including my stories of physiotherapy, and of hospital nurses (one in particular-I know everyone loves a good ol' nurse story..!). Those posts will come in the future.

That's all for now and again, that's for all of the thoughts, prayers, and positive energy!




































Tuesday, August 16, 2011

One More Sleep

One more sleep until my hip surgery!

I'm doing dialysis now and plan to be off around midnight or just before.

I'm passing the time on dialysis by watching Billy the Exterminator.


...and currently listening to Drive by Incubus.  Oh how I love this song.


Wish me luck!

Saturday, August 6, 2011

Devita Solar Protective Moisturizer SPF 30 plus

I just bought the above sunscreen online.  It's no secret that us lupies need to wear sunscreen.  I was watching a youtube video where someone mentioned that they use this sunscreen. My skin is quite sensitive and breaks out easily.  So I went to Devita's website and saw the following description for this sunscreen:


Sunshine Go Away Today... And it will with DeVita's feather-light, never heavy, oily or greasy moisturizing sun block. It's hard to believe (but it's true!) that our all-natural, sheer, moisturizer/sun screen is a deeply moisturizing daytime cream and sun block all in one! DeVita's exclusive formulation is created specifically for those sensitive to breakouts. This moisturizer is light enough to wear under make-up, absorbs quickly, and yet leaves the skin nourished and feeling soft and smooth. Offering full spectrum UVA/UVB sun protection with a SPF of 30+. Safe for adults and children. Titanium Dioxide Free. 

DeVita skin care products are 100 percent Vegan and Paraben Free. They are considered Gluten Sensitive Safe and never contain GMO's. DeVita products are never tested on animals (only humans!). 



Sounds good to me!  I will try to do a review of it...but that may take some time, especially with the surgery coming up.  That said, I bought the sunscreen from http://www.iherb.com.  They had the most reasonable pricing, especially when it comes to shipping to Canada.  Some sites were charging $25+ for shipping! Huh??  This site charged $4 to ship to Canada. 


Also, if you use the following coupon code, you can get an extra $5 off! Not bad! MIZ923 (isn't it funny that the first three letters of the coupon code is "MIZ"? hehehe)


So that's all for now.  I wonder if I'll get it in the mail before my surgery..?

Friday, August 5, 2011

1 hour massage = win

Yesterday I was looking online for places to get a massage close to my home.  I found a good place that was pretty close and easy to get to.  I was delighted when they called me back this morning and told me that there was space available today.

I went today at noon for a 1 hour massage.  My massage therapist today was Sarah.  Now I must admit-usually when I'm getting a massage, I just want to be quiet and enjoy.  But it was different with Sarah.  She chatted with me at the beginning of the massage after going over my (extensive) medical history.  I think she wanted to see if i actually wanted to chat or if I wanted to just relax.  At first, yes, I wanted to relax.  But as we started chatting, I found myself bringing up other stuff to talk about if there was a gap in conversation.  I WANTED to talk to her and I actually liked listening to her when I wasn't talking and while getting the massage.  I really like her and I'm going to go back. I made an appointment to go back next Friday, but I don't know if I should.  

The surgery is the following Wednesday.  I'd think that maybe it might not be a good idea to have someone slather me in oil, especially since the instruction binder that I was given after booking the surgery says that I shouldn't even use skin lotion for the 5 days prior to the surgery, and I am to bathe myself in chlorohexidine.   Sucks...because I really want that massage.  I think anything earlier than Friday would be too much.  Sarah is only in on Mondays, Tuesdays, and Fridays.  Conversely, another thing for me to consider is the fact that after I have the surgery, I won't be able to get any massages for a while.  Hmph.

I felt great after the massage.  I'm glad I did it.

Monday, August 1, 2011

Dream that I had last night

If you're an avid reader of my blog, I'm sure you'll have noticed that I like documenting my dreams when I remember them.  We obviously have dreams every time we sleep as it is near impossible to simply turn your brain off, but remembering your dreams is a different story.

Last night I dreamed that I was somewhere, perhaps a high school.  I was standing in the gymnasium and a burly football jock-looking guy came over and started kicking my foot.  It didn't cause me to move or fall, but it hurt.  I immediately went and told the school principal, and the bully got in trouble.

The school that I was in seemed to have television screens all up and through the hallway.  As I walked by one of the screens, I glanced up at it and it read "______ is going to kill you!" with ______ being the bully's name as I cannot remember his name or if he even had one.  My first instinct? Run.

I ran down a stairway that wasn't often used, knowing that it would be unlikely that he'd be there.  All of a sudden...I was in the gymnasium again and was face to face with the bully.  He approached me aggressively.  I knew I couldn't just stand there.  So, I kicked him in the stomach a la Bruce Lee.

LOL!!

The bully went flying to the ground and was defenseless against my Bruce Lee kick.  I had won.  I stood up to the bully when he bullied me in the first place, and I didn't let him get away with it when he tried to intimidate me.

Life has all sorts of challenges.  While they may seem big...face them.  Head on.  That's what I did in my dream, and that's what I do in MY life.  

Friday, July 29, 2011

Pre Admission appointment today

I decided that I had better try and compose this post before I fall asleep as it is almost 12:am and I've been up since 5:45am last night!

Today was my pre-admission appointment for my hip replacement surgery.  I did some blood work, a ECG, and saw a ton of other people.  I saw/spoke to a nurse who thoroughly went over my history.  She typed much of it into the computer, so I hope that means it'll be there for all doctors and medical professionals to reference the next time they want information.

Anyhow, I saw a pharmacist who went over my medications.  She told me which medications to take the day of the surgery, which ones not to take, etc.  That visit was pretty self explanatory.  I also went to a group meeting where another nurse and a physiotherapist spoke to us.  The physio spoke to us first.  She told us about some of the walking and showering aids we would need after discharge.  This includes a cane, walker, etc.  She also told us about the no-nos for after the surgery.  I was aware of most of this since I read the binder I had received a few weeks before.

I have to say that there was an elderly woman who was hard of hearing.  Man, was she ever a riot! Sometimes she was happy and funny.  At one point she and I made (accidental on my end) eye contact.  When we were looking at each other, she smiled, winked, and waived at me.  I nearly busted out in laughter when she did that...she's so funny.  But, she was very concerned with things costing her money-for example, walkers, canes, shower chairs, etc.  She was also upset that the nurse has given us so much information about the surgery.  By "so much information",  I mean the fact that the nurse told us about how we'll be stapled together, how the anesthetic will work, etc.  This nice old lady would just prefer to go to the hospital, get the surgery done, and be done with it.  I must say, her daughter or care giver or whoever the woman with the elderly woman was...she was a definite instigator in my opinion.  I'm gonna say it's mother and daughter.  The daughter knows how her mother is, so why let your mother talk and talk and talk for 5 minutes about something, especially when there are 5 other patients there in the meeting?  When the mother started CRYING, the daughter said to her "Don't cry".  Then the nurse said something like "it's okay to cry".  Then the daughter said something like "You know what? I know what I'm doing.  She's upset.  You guys give too much information".  Huh??

I used my spy cam to film a bit....



Oh well.

I also saw the anesthesiologist.  He was quite impressed with the fact that I'm on home hemodialysis and I do it myself.  I guess he had never heard of it before. He was especially impressed with the fact that I cannulate myself.  He asked me if I was a nurse or medical student and I said no.  He made me feel super smart :).

He told me about a spinal freeze (I think that's what he called it?) that'll be put in my back for numbing.  I'm always a bit scared about needles in the back for some reason.  When I asked him what kind of pain I can expect, he compared it to the needle that I would get in the mouth from a dentist.  Still scary to me!  He said anyone who can stick needles in their arms and has been through all I have been through could handle the needle in the back.  I told him that I had had an epidural before...and I was scared out of my mind.  The anesthesiologist had to actually give me a relaxing needle in the vein of my hand before doing the epidural.  It helped.  I also remember being pissed that my epidural stopped working about 1.5 days later because the nurse forgot to flush it.  I went through all of that and didn't even get the full benefit of the epidural!

Ahh, but I digress.  He said that the epidural needle is much larger than the needle that would be used for this particular surgery.  He said this surgery would make me numb from just under the chest all the way down to the bottom of my legs.  He said I had a choice of being put to sleep during the surgery or staying awake with minimal anesthetic.  There would obviously be a blanket covering my mid-section so I wouldn't be able to see into my flesh.  Um..i'll choose to go to sleep please.

After that, my appointment was done.  It was about 12:30-1pm ish and my appointment started at 7:30am. I came home, ate, did some work on the computer...and now I'm wiped!  So I apologize in advance for any spelling/grammar mistakes :)

Wednesday, July 20, 2011

A name has been found for the white spots on my face!

Hypergranulotic dyscornification.

Huh??

Basically, the skin isn't maturing properly.  That's what I took from what my dermatologist said to me.  She's going to take pictures of it to show to other doctors.

Anyone else have experience with this?? *deer in headlights face*

Tuesday, July 19, 2011

Oncology Appointment

Today was my oncology appointment.

For the other few times that I went to see my oncologist, I did not have to see a fellow.  I have to say...I was slightly disappointed when a fellow walked in.  I'm sorry, I know that hands on experience is the best experience.  However, when you have a chronic illness like me, and you see and talk to a million doctors like me, and you get asked the same exact questions time and time again...like me..it gets exhausting.

Anyhow, I spoke with the fellow who asked me the usual questions and did the usual checking of blood pressure, pulse, heart rate, etc.  He told me that my numbers were stable and I did not need any treatment.  That's always good news.

When my doctor came in, I asked her about the prospect of transplant. She explained to me again the fear of people getting transplant when they have cancer or cancer-like diseases.  Our immune systems help us fight off cancer, and if one receives a transplant, the autoimmune drugs taken obviously lower our immune systems.  So, theoretically, if I get a transplant and am on autoimmune drugs, that can lessen my ability to potentially fight off the cancer.

As I opened my mouth to retort, she then said "however, one could argue that you are already on autoimmune drugs and are doing fine..."

EXACTTTLY!  I'm already on prednisone, plaquenil (hydroxychloroquine), MMF..I'm totally on a lot of autoimmune drugs already.  My oncologist also went on to tell me that she has treated people with cancer-like illnesses who have had transplants (like liver, heart, etc.) and they did just fine. She also stated that if things should progress with me on the cancer front, she didn't think that the medication she would use to treat the cancer would conflict with the transplant.  At the end of the day, she's going to have to have a meeting with my nephrologist to see what the next step is.  Hopefully I'll be able to blog about a transplant soon...and hopefully the joy and anticipation won't be taken away from me again.

P.S.- today is one of the hottest days that I can remember...and I love every second of it. Don't worry, I covered up and wore sunscreen ;)




Monday, July 18, 2011

Flow on Lupus!

Hey All,

I have some new things coming up visually where my blog is concerned.  The first thing is..I registered a domain name for my blog! I have registered http://www.flowonlupus.com as my domain. My blogspot domain will still work just great for those who may have my blog bookmarked or something like that.

More goodness to come!

Saturday, July 16, 2011

chlorhexidine?

Yesterday my Mom and I went on a mission to find chlorhexidine. First stop: Walmart. The pharmacist told me that they had the type that is to be used as an oral rinse, but that was by prescription only. I'm assuming that the one that I want cannot be used orally.

Next, Shopper's Drug Mart. I went straight to the pharmacy. There were two people ahead of me. I waited and I waited. An older woman came and stood in FRONT of me. Huh?? I decided to be respectful since she was older than me. She saw that I was standing there but still went in front of me. She was not THAT old. Maybe mid-late sixties. After about 10 minutes, what I found out was the pharmacist's assistant expressed to the woman who budded in front of me that the pharmacist had called in sick. The assistant then went to the back where the medication is and started doing something. The woman who budded had asked the assistant whether she'd be able to get her medication or not. The assistant looked at me and told me that she'd just be a few minutes. Shortly after that, another gentleman came began to wait. Another woman who was waiting behind me decided to leave as the wait was too long for her.

When the assistant noticed the gentleman waiting, she said to him that it would be just a few minutes. The man said "oh, I want to drop off my prescription". The assistant came over, took his prescription, and started talking to him. She then started typing things into the computer.

HUH?? She did not even ASK me what I was waiting for, but since this guy was "just dropping off a prescription", she decides to help him first? She completely ignored me and she knew I was there first! I looked over to my mom who was dosing off on a chair.

"MOM" I said loudly. My mom woke up and looked at me. I told her, in a loud voice, that we were leaving. I looked back at the assistant and said "I've been waiting for 25 minutes and she goes and helps someone who came after me when she knows that I've been waiting for so long!" I turned around and looked back at my mother as I did not want to hear or see the assistant try and apologize to me and try to help me now. My mom then said "wait!" as in, wait a few more minutes for the assistant to help you. I replied with a stern NO and walked towards the exit. I left the store and stood beside the van waiting for my Mom who came out just a few seconds after me. She knew I was upset.

I hate being and feeling ignored like that. I sometimes feel like I am not taken seriously because I look young. I'm not-I'm a grown woman who deserves respect. In fact, even if I was young, I deserve respect anyways! If I was a young person standing there, I obviously have a reason to stand there...I'm not standing there to observe the scenery!

When we left and got home, I still felt very upset. I was upset that I felt mistreated, especially since my job's primary function is customer service. I also felt upset that I perhaps overreacted. I didn't use any curse words, but I did make it clear that I was very angry. Rightfully so I suppose, as I just wasted nearly 30 minutes being ignored, but I still could have acted better. It's just that...two people went in front of me. I'm not invisible.

Well I just wanted so share that as it upset me so much. I think if I was having a better day, it wouldn't have upset me so much. Nothing in particular happened to make me upset earlier in the day...it was just...one of "those" days.

Needless to say, I am yet to get my hands on any chlorhexidine.

Thursday, July 14, 2011

Double Time!

I'm sitting here feeling unmotivated to do homework, so I thought I'd take a break and blog. I know that I have to work twice as hard to not just finish my courses on time, but to finish them EARLY. I am taking 4 online courses with two of them ending in August and the other two ending in October. Only 1 of the two courses ending next month have an exam. That final exam is actually the same week as my surgery. That said, I want to finish everything early and do that exam bright and early on Monday morning.

It's kinda weird how nervous I feel. For someone who has been bed ridden before for what felt like an eternity but was only actually several weeks, it's THAT that scares me most. Everything associated with me not being able to do things myself and not being able to move around freely scares me. My Dad already got me a raised toilet chair thing. That way I don't have to bend all the way down to sit on the toilet.

I remember being in the hospital and hating that toilet chair. It was never there for me, it was usually there for the person I was sharing a room with. That said, whenever a nurse would take the person I'm sharing a room with to the washroom, they'd bring the toilet chair to her bed, sit her in the chair, wheel it to the toilet so she could use it, wheel the chair back to the woman's bed, then return the chair to the toilet and LOCK it there (there was a little lever on the bottom wheel area that can be locked). I never understood why they did that. Sorry, but my bum doesn't want to sit on the toilet seat that a stranger bum was just on. And, since I'm in the hospital, I'm probably weak and/or tired, so I don't want to have to find a way to bend down to unlock a toilet chair to move it out of the way. If they need to wheel the chair over to her so she can sit on it...why not just leave the toilet chair beside her?? **end rant.

My all day pre-admission appointment is two weeks from today. I have a couple of documents that I need to have my doctor fill out...I suppose it will be my nephrologist as my rheumy is gone! :(

The binder I received is plenty detailed. My favourite page is below:

How to avoid becoming septic 101:




Tuesday, July 12, 2011

Wow..that was fast.

Today was my ortho surgeon appointment. When I got there, I spoke to the fellow first. He was quite nice. He asked me how I felt, and if things felt worse, etc. I told him about the issues with my knee and hip. He also looked over the x-rays I did last week.

When he called the actual surgeon in, the surgeon told me about hip replacement surgery after I told him that I thought that my hip was worse than my knee. He then asked if I wanted to do the hip replacement surgery and I told him that I did.

I signed some papers with the secretary and received a binder full of information. Wowzers. There are a lot of rules. For example...I'm not allowed to cross my legs! Yikes. The date is in August. Unfortunately, it is one day before my Dad is going to take the kids in his program to camp! He might leave the camp early. I'd hate for him to do that on my part, though. I'm going to see if there is anyone else around who can come and spend the day with me. My Dad will be there for me the day of the surgery all day, which is a Wednesday. My sister can perhaps hang out with me during the day before she goes to work on the Thursday my dad leaves...and my Mom should be there for me in the evening. My sister can maybe pick her up. Same with Friday. On Saturday and Sunday, my Mom is off, and my Dad is home again on Sunday. I'm sure it'll all work out. Mind you, this is just me being spoiled. I mainly want someone there to bring me non-hospital food! *is embarrassed*.

I'll be admitted for 4-5 days or so. Physiotherapy will begin one day after surgery. Ugh! I'll have to do in-centre, 4 hour dialysis! *gag*. Can't they wheel a dialysis machine in, set it up, and leave it beside me and let me dialyze myself overnight? Yeah I'm guessing I won't wanna lift a fork to my mouth, let alone cannulate myself.

So, I'll connect with you all again closer to the date. I'm kinda nervous...mostly about the physio and limitations I'll be under after the surgery for about 3 months as opposed to the surgery itself. Eeep!

Oh, and I'm totally cancelling this hip replacement surgery if anything comes up in terms of kidney transplant. Please help me pray that a transplant date will be ok'd and will come up soon, necessitating the cancellation of this hip replacement surgery! It's not that I don't want the hip replacement surgery, but I obviously have priorities to worry about here! Hehe

Thursday, June 30, 2011

Rheumy and Nephro appointments

What a long day I had!

The day started off with a visit to TWH to see Dr. Fortin. It was sad because I knew it would be my last appointment with him before he headed off to Quebec. The appointment was good and there are no changes where my medication is concerned.



We discussed my prednisone. Right now, I'm on 5mg daily. Passed experience seems to show that I cannot be without prednisone or else I'll flare. But, that was several years ago and perhaps it was tapered too quickly. Dr. Fortin kept me on a small dose of prednisone because he did not want me to flare up right before a potential transplant, something that has occurred before.


But now, with this myeloma diagnosis, he feels that the transplant will be on hold for quite some time, and therefore wonders if it is worth it to perhaps look at dropping the prednisone even further. This concerns me a bit. It kind of...solidifies the fact that my transplant would be on hold.

After saying our goodbyes, my father dropped me off at TGH for my nephro appointment. At that point, it was about 11am and my appointment was not until 1pm. I quickly ate a bagel from bagel stop and a soy latte from starbucks. I was quite hungry as I had to fast for my bloodwork earlier. I decided afterwards that it would be a good idea to do my x-rays for my up and coming appointment with the ortho surgeon.

I went to the medical imaging department, checked in, and got changed. After I got changed, I was told that my xrays could not be done. I had to do them at TWH (where I just was for my rheumy appt) because only that hospital could produce physical xrays as opposed to digital ones on the computer. Since it was a possibility that I would be having surgery, the surgeon would need to bring these physical xrays into the OR with him. The technologists told me that she had called TWH and the line up for xrays was not long.

Damn. So I put all my clothes back on and ran outside to catch the hospital shuttle bus back to TWH. When I got to TWH..it was the funniest thing. There were about 30 people waiting for x-rays. It was already 12:10pm. I'd have to have my xrays done and be outside to catch the bus by 12:45pm as the shuttle buses come every 15 minutes. I told the secretary this when I checked in and she said she'd expedite my wait. She then went on lunch.

I waited and I waited. It was now 12:40pm. The secretary finally came back. I told her that I was leaving to go to my appointment at TGH, and I asked if she could give me some sort of priority when I came back since I'd have to come ALL the way back here again. She seemed surprised that I hadn't been called yet. She went somewhere to speak to someone and then rushed me in. She asked me to give her the phone number to the doctor I was going to see so she could call them and tell them that I'd be late, so I did.

I did my xrays and was done by 12:55pm. I threw my clothes on so quickly that it was only a coincidence that I put my clothes on correctly. I limped/ran to where the shuttle bus was. I could see it parked as I quickly limped down the long hallway to the doors. I made it.

I got to my appointment about 15 minutes late. I saw the fellow first, then Dr. Richardson. I asked him about his thoughts on transplant. He said that he and my oncologist would sit down and talk about it after my appointment with her later this month. He reiterated the story about another patient that he had who had abnormal proteins in her bone marrow and it did not develop into anything. That is certainly encouraging.

I went outside and my Dad was there with a slurpee and beef patty. With all the running up and down that I did, the slurpee went down very smoothly. I went home and took a much needed nap!

Next appointment: next week- ortho surgeon! Will I be able to get this surgery so I can stop limping around? We'll see what he says...

Wednesday, June 29, 2011

Rheumatology and Nephrology appointments tomorrow

Tomorrow i'll be going to my rheumatology appointment at 9am, then I have my nephrology appointment at 1pm. Somewhere in between there, I'll get my x-rays done for my up and coming ortho appointment. Tomorrow will be my last appointment with Dr. Fortin.

I'm pretty sad about that. Dr. Fortin is such a great guy. I was going to make him cupcakes, but the person who was going to help me is not able to help anymore..and taking on the making and decorating of the cupcakes was just too much of a project for me and I'm pretty sure I wouldn't make it.

In other news, I used my aeroplan points to get a samsung digital camera back in November. I did not really get to use it as the opportunity never presented itself. So, I wanted to use it a couple of weeks ago as my friend was getting married. I noticed that, after recording a "test clip", the there was a loud "buzzing" sound when I zoomed in and out. I told samsung and they told me to send it in for service.

I received it back on Monday. The repair order in the box stated that everything was "to manufacturer's specifications". Huh?? So I called them back and they contacted the repair centre. I was told that a "senior repair person" had looked at my camera and was convinced that there was no real problem. I then said "ok, so basically what you're saying is that I'm stuck with a camera that doesn't work properly?" The gentleman I spoke to then told me to upload a video to document the problem, so I did. You can view the video here. Clearly not normal! I emailed the video to Samsung as instructed.

After emailing it, I received a call the following day where they did in fact agree that this was not normal. I received a UPS shipping label and will need to ship it out again. Hopefully it comes back fixed this time, even though the wedding is now over.

That's all for now, I'll report back with what my rheumatologist & nephrologist says.
 
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