Monday, December 31, 2012

tummy troubles

First off, let me ask for forgiveness on this post.  It is likely to be riddled with spelling, punctuatiom, and other similar mistakes, I'm blogging from my tablet and my tablet stramly doesn't have a blogger app (or i cannot find it) even though it is an android os tablet.  Well, hopefully it makes sense.

In the middle of the night on Friday morning, I woke up with terrible stomach pain. It was so bad that I couldm't even lie still.  So, after trying to manage to fall asleep with the aid of a hot water bottle, i decided that I had better go to the hospital.

I got to the hospital and i was in bad shape. My stomach hurt so badly and i was running back and forth to the washroom.

Long story short, i had c difficile!! My CT scan and the rest of my bloodwork came up clear. So now i'm taking flagyl for 14 days and that should hopefully clear things up.

Some nonsense definitely occurred along the way, but imwill definitely report back at a later time after I spend some time chillin!!

P.S. I'm not missing my trip!!!!!

Wednesday, December 26, 2012

Merry Christmas/Happy Holidays!

I know that I'm one day late, but Merry Christmas, everyone!

Yesterday was a good day.  I slept in, and it was great being able to just be lazy in bed and do nothing :)  Afterwards, I ate breakfast- nothing beats pancakes on Christmas morning. After breakfast, I got cleaned up and changed, and put together the gifts for my family. Soon enough, it was dinner time.  My brother arrived and we all sat down and enjoyed a delicious meal and great conversation and laughs.

Afterwards, we opened our presents! My mom and dad gave me some money. This will certainly be helpful for my up and coming trip. My sister bought me some travel essentials, including a passport holder, airport approved toiletry containers, and, of course, some Euros/spending money.  '

My brother, knowing that I just joined the gym last month, got me some amazing trainers to wear while I work out (my brother buys me some sort of sneaker/running shoe for every holiday anyways! It's great as he has such good taste).  They were too small, so my brother has to take them back and exchange them haha! They are so nice that I didn't even want to give them to him to take back.  They have memory foam typed material on the inside, which will make for a great and comfortable workout. I did buy some shoes for the gym earlier this month as well...well, I guess I'll have two pairs of gym shoes! My brother also got me some gym socks.


I worked today to get some holiday pay. I'm also working on Friday. Then, I will likely work 8-2 on Saturday, then 6-9.  I know, a lot of hours in one day! But I figure I'll request to get paid for the 8-2, then I'll bank the 6-9. The entire day/shifts will be considered time and a half.  I probably wouldn't have done anything anyways except for maybe sit around the house..maybe go to the gym...but I can possibly do that between 2-6. I'm also considering going to the mall in between to get some skinny jeans/pants.  LOL.

Well, that's all! Chat soon.

xo


Saturday, December 22, 2012

It has been a long time-I know!

It has been a while since I've blogged. To be honest..I just didn't feel like it.

I didn't feel happy.  Downright sad, in fact.  Have I done a complete 180 and now feel completely awesome?  No. But, I do feel better. I received so many messages of encouragement and support, and I really appreciated them. I happened to get one particular comment and I just happened to read it at the exact time that I really needed a pick-me-up.

So what can I say? I'm a work in progress. I'm still down about everything I blogged about, especially the whole job prospects thing...but I'll keep trying.  I'll keep trying.

Since my last post, I suffered from a bad case of food poisoning.  My dad picked me up from work and we were on our way home as we passed by the local KFC.  I hadn't had KFC in a long time, and was suddenly craving it when we drove by...so I asked me dad to stop. Bad decision. I was literally sick for an entire week.  This was on a Monday, and thank goodness I had a vacation day scheduled on the Wednesday so I could just stay home and not worry about calling in sick.  I went to work on the Friday, and also went in to do some overtime on the Saturday..but I was still under the weather.  This was 2 weeks ago. Because I was so sick, I was quite dehydrated.  When I did my bloodwork, I got a call the next day telling me that my creatinine had went from the usual 67-68 range all the way up to 110. This was all due to the fact that I was just so dehydrated.  I re-did my bloodwork on Thursday and didn't receive any panicked easy-call messages from my transplant coordinator, so I'm guessing that my creatinine has sorted itself out.

Also, I'm travelling to Europe next month! It will be my first trip post transplant, and also the first trip where I'm actually going by myself.  It's kind of a big deal for me :)  I'm going to visit my friend who now lives in The Netherlands. I'll be there for just over a week. I can't wait! So I've spent the last few Saturdays working a few hours of overtime.  I'll be heading to work in about half an hour..first to meet a friend for a late lunch/early dinner, then we'll both head back to work. I've been doing this overtime to build up some excess spending money for my trip! :)

So while I'm still not "all smiles" yet, I'm definitely working on it. Hoping for some good news soon on the job front.

xo

Thursday, November 29, 2012

Bad luck comes in Threes?

When I first started this blog, I never imagined it would turn into something that would help so many others or that so many people would identify with. I just wanted to create a medium where I could express my thoughts and experiences about lupus and the things that come along with it. When I came up with the title of my blog...it just couldn't have been more perfect. My blog became less of a "lupus" blog and more of a blog geared towards the actual title of my blog-the LIFE of a 20, now 30 something with lupus.

I've been a bit out of sorts for the last few weeks. There have been a number of things going on and happening around me, and it has taken a lot out of me emotionally.

I already mentioned last week that I was upset about what had happened with regards to my appointment with the plastic surg clinic.  It just seems so easy to me-fix the mistake that you have made. But apparently it simply isn't that simple. Either by some miracle, OHIP decides to cover my surgery, I have to come up with the thousands of dollars that the surgery will cost, or I just have to live with the permanent mistake made by someone else.

Secondly, I've finished school, I wrote the HR exam, and I'm ready to move on to bigger and better things.  It has been exceedingly difficult to do so. I've been applying like crazy to the few suitable jobs that I've seen, but have only gotten one interview so far.  It's difficult when I know that for each job I apply for, there are literally over a hundred other people who have applied for the same position and have much more experience than I do. Many of the jobs that I've seen require all kinds of experience, even for what appears to be an entry level position. I can't even manage to get one of these positions so that I can get the appropriate experience...because I don't have that appropriate experience in the first place. It's difficult for me because I worked so hard to get to where I am..juggling home hemo while going to school full time and working part time was no small feat I tell you. Pile studying for the nke on top of that..that was major. Let us not forget the days in between when I was either sick or had to sprinkle doctor's appointments in between as well. But at the end, I did it. I finished. But..I'm still where I was before I started, working for a great company, but doing something that I really don't want to do (anymore).  It's frustrating.

In previous posts, I had mentioned that I was seeing someone. Well, I'm no longer seeing him. I wish I could sit here and explain why, but I can't, because I don't know. We just kind of went from good to nothing at all.

Again, as I've mentioned before, I've been pretty candid about my past struggles. I've talked about my time at Sick Kids and the seizures I've had, the time that I lost my ability to walk/use my arms for a while, my numerous surgeries, etc. It most definitely has not been easy.  In fact, it has been down right difficult. I've been upset over these situations. I've cried over them. So with all that I've experienced, all that I've seen, and all that I've felt, at the end of the day, it always seems like matters of the heart hurt me and affect me the most.

There isn't much that I can say about him that's bad. The time we spent together was great, and it made the last bit of my summer as well as the beginning of my fall amazingly happy and filled with fun and laughs.

Dealing with lupus and the things that came along with it where I am concerned has been much easier since having the transplant.  Most days I feel great, and simply taking my medication once a day is much better than twice a day coupled with dialysis.  Before the transplant, I simply wasn't ready to bring anyone into my life. It was a lot for ME to deal with, never mind bringing someone brand new into it.  But after the transplant, not only did I feel great, but I felt ready.  But with the amount of time that had passed since my last involvement with someone..it almost felt/feels brand new to me.  So when that first person who's company you really enjoy comes along, who accepts you and all of your "stuff"..suddenly fades away, it hurts. So much.

I regret nothing, because the time we shared was absolutely amazing, and I felt a different kind of "happy" that I haven't felt in a long time.  I was experiencing an amazing high, and I never wanted to come down..and it stinks that I've had to.

All three of these things have weighed heavily on my mind.  I know it's not the end of the world. Things can and will change, progress will be made in some way, shape, or form.  But as I blink away my tears while I type, and reflect upon everything I've said above, all I can think is that right here, right now...sucks.

Wednesday, November 21, 2012

Disappointed

I'm blogging from my phone in bed. I'm actually home from work today with a bad stomach ache. I hate missing work. Also apologizing in advance for any spelling or grammatical errors.

Anyhow, as the title of this post indicates, I'm feeling pretty disappointed today for various reasons.

I went to see the plastic surgeon yesterday. I didn't even actually get to meet the surgeon-just the fellow helping the surgeon. The doctor looked at my stomach and tested my abdominal muscles by having me lie on my back and lift both legs off of the bed. She said my muscle tone was still in tact, which was good.

She went on to say that this kind of surgery was risky due to the fact that I'm on immunosuppressant drugs. I know this already-I've had numerous surgeries. But anyhow, she said it. She said she would consult with the doctor and they would both come back into the room.

She came back a short time after, without the main doctor. She then said there are 2 problems. One, the issue she already mentioned. Two, the fact that OHIP was very unlikely to pay for this procedure as it was strictly cosmetic. I asked if any consideration would be given considering the fact that this scar exists due to doctor error. She said she would say in the letter that it occurred due to a complication after surgery. I know doctors like to protect themselves and their colleagues?, so of course she wouldn't use the word "error" or "mistake", which is what it was. She said there was no point further discussing the risks associated with the surgery until OHIP responded to the letter. She made it quite clear that it was almost impossible that this would be covered.

I was so disappointed that I sat I the room I was in and cried after the doctor left. Why is this happening? Why are they allowed to scar me permanently due to their own errors/ignoring what I said to them about a nurse removing one staple the day before and concluding that my wound was not healed enough?

So now it's like..if OHIP says no they won't pay for it, I, a 30 year old woman, who has been on the receiving end of MANY doctor/medical staff mistakes, will be forced to either live with it or shell out hundreds of thousands of dollars to pay for a mistake made by a doctor.

I don't ask for much. I have plenty of scars from surgery, and none of them look like this one. I just want the error fixed. I've been through the ringer and back and am asking for one thing in return-revise the huge scar on my stomach that I have lived with for 6 years.

I'm considering my options here. It won't be until after the new year that OHIP. Will respond to the letter with their decision. If it is a no, I'm going back to my original surgeon who did the surgery and asking him to help me. Mind you, this scar wasn't HIS fault, but he knows about it as it occurred while he was my doctor. It was another doctor who made this life changing error.

Gosh I'm just so upset and disappointed that I can't even begin to describe it.

Saturday, November 10, 2012

Nephro and Rheumy appts this week

This week was a busy one for me.

On Mondays I usually work 8-1, but this Monday was a vacation day for me. I also had a transplant clinic that day. So, I went to the hospital a bit early to do blood work as well as meet up with my girls who are on dialysis. I got the Tim Horton's oatmeal for the first time-mixed berry. It was delicious!

So I met/sat with the girls until they were done their treatment, then we all went out for lunch. I was glad to spend some time with them. After that, I went to see my transplant doc.  Everything is still going great, and my creatinine is still awesome at 67.

On Tuesday and Wednesday, I went to work. I worked with one of my managers and two of my colleagues for "Take Your Kids To Work" day.  We talked about the importance of a good resume as well as giving a good first impression. This involved having me be the "good applicant" and my colleague Sean being the "not-so good applicant". My other colleague Lucy was my manager Sonia's assistant. I think the students, although they may not know it yet, learned a lot.  I remember clearly my "Take Your Kids To Work" day outing with my father. It was awfully exciting, especially with him being a police officer! :)

On Thursday, I had a rheumy appointment. I was happy to see Lisa, another patient of my current rheumy.  If you're reading this-Hi Lisa!

Luckily everything is stable, and my next appointment won't be until May I think. Good stuff!

On Friday, I went to the gym and destroyed my arms. I'm still sore in the best possible way!

Today I went to the dentist. I paid the price for my lack of dental visits with a good deep scaling of my teeth. I also got 3 teeth fixed-one chipped tooth, one previously filled tooth where the filling fell out, and one slightly chipped bottom front tooth.  The whole ordeal took 2 hours..!! By the end, my dentist and I laughed at the fact that my mouth was so tired from being open for so long.

As I type this entry, I'm just waiting on my friend Mikey to pick me up so we can hang out. Mikey and I have been friends since we worked together back in the mid-late 90s. He's super.

Well, that was and is my week. :-) I'm working tomorrow for Remembrance day. Hurray for double time! Boo to working 2pm-10pm :-/

Sunday, November 4, 2012

Womp womp

I had mentioned a job interview that I went to a few weeks ago. Well I heard back this past week and unfortunately I didn't get the job. :-(

I was happy to learn that I was one of the top 3 candidates that had been interviewed, but there was another candidate who simply had more on the job experience related to this specific position.

I learned this a week ago and I'm only just posting about it now. I won't lie... I was pretty bummed. I was really looking forward to finally getting a position in my field and starting a career in the field that I worked so hard to complete and complete with honours. I already feel so behind when it comes to everything...just life in general. I just recently finished school while all of my friends have long finished school and are now working in their chosen careers..or are perhaps working in their chosen field and are taking part time courses. Almost every single one of my friends is married and stuff...I'm far from that.

Yes, yes, I know. It's not good or healthy to compare yourself with other people. I also know that the people I'm comparing myself to (thankfully) didn't have to face some of the obstacles that I had to. But sometimes I forget that and still get frustrated. In fact, any job I've ever interviewed for...I've been offered a position. Maybe it was good for me to see that one doesn't always get the position, and one doesn't always get what they want...or at least..not right away.

Jobs are hard to come by nowadays. There is so much competition for every job, no matter what it is. I think this partially adds to my frustration with not getting that position. I managed to get my foot in the door and get the interview..which is difficult enough as literally hundreds of people apply for positions. And then the opportunity slipped through my fingers!

My interview did go pretty well. I did get stumped with one of the questions quite a bit in that it wasn't a question I had anticipated in all of my practicing, but I still did manage to think on my toes and answer it. I can't remember my response exactly, but the question was "what do you like most about your current job, and what do you like the least?" The what do you like the LEAST part was the kicker for sure.

Anyhow? I know there will be other interviews and the job that is mine will be mine...I just hope it comes soon..!

Monday, October 22, 2012

Working with Lupus-Revisited

Seems that I've been 'revisiting' a few topics as of late, haven't I!  Well, I think it's important.  The way I feel and my thoughts on things have changed.  I've been documenting my thoughts and experiences on this blog since 2007, and that's ample time for thoughts and views and concerns to change.

I've been working part-time for the bank since 2003. This job has meant so much to me over the years.  I've met great people and have made awesome connections. I can say without hesitation that I have met some lifelong friends there, some that have been there for me through thick and thin, and I really don't know what I would do without them. I won't even get into how this job and the health benefits it provides, even to a part time worker, has saved my life.

With all of that said, I seriously need a change of scenery.  I've been in that same department doing the same job since 2003 and it's time that I move on.  Not away from the company if I can help it, however.  All of the long hours spent in class, juggling sleep, studying, and dialysis...they've all paid off.  I'm a college grad, and my diploma says so.  It's time for me to get a job in HR now!

I actually had a job interview last week for an admin coordinator position within the bank. This position encompasses a lot of HR functions. That, coupled with the invaluable administrative experience I would get from such a position is what attracted me to it.  So as for the interview...it went okay, but I will admit that I was a little rusty. They asked me what I liked best about my job as well as what I liked the least.  Eek! It's easy to state what you like most, but not so east to state what you like least.  I was caught off guard with that one.  I'm hoping that both of the people that interviewed me, the director and the chief operating officer, could see my eagerness to learn as well as my uplifting spirit in addition the the skill set I bring to the table.

One of the questions related to what I felt might be a possible struggle for me.  Well, I was honest. This would be my first full time job-I've always worked part time.  The COO asked me if I thought my head would be hitting the counter mid-day (he was a funny guy). I countered that by said that I managed to go to school, go to work, and fit homework in between and maintain/achieve Dean's list status, so I didn't foresee that being an issue.

But..what if it IS an issue?

In the position I'm in right now, I work 3 days a week.  If I call in sick, there are hundreds of other people doing the exact same thing that I'm doing right now. In this new position, however, if I call in sick, all of the undone work sits there until I come back..and if I'm away long enough, they'll have to fill the position somehow.  Then, when I return, this job probably won't be there waiting for me anymore. Scary stuff.

But, that said, after my transplant, I truly feel amazing and have rarely gotten sick or felt so exhausted that I didn't want to get out of bed...all things I cannot say about how I felt pre-transplant.

I didn't discuss my condition during the interview.  I discussed this at length with my manager.  She suggested that if they do go ahead and offer me a position, I should mention that I do have appointments from time to time and just want to make sure it's okay...and if, for example, I can come to work early, leave work late, etc. to get work done. Sounds like a good plan, I think.

So I may or may not get this job. Even if I don't, these are still thoughts, fears, etc. I have to think about. I just hope it doesn't get to be too...much. Ya know?

How do you feel?

Thursday, October 11, 2012

Updates!

I know that I have been MIA for a while-you know how life gets in the way! I haven't had much to report to be honest, but here are a few things.

Back in August, I wrote about my up and coming appointment with the plastic surgeon with regards to my stomach scar. Well, unfortunately, a couple of days before my appointment, the receptionist called me and cancelled it. My appointment with the vascular surgeon with regards to my fistula in early September was also cancelled on me as well.  What the heck! So I've been rescheduled to see the surgeon for my stomach in November, and I just called my coordinator asking for the number to the vascular department so that I can make that appointment.

Now, on to my foot. I went to emerg a couple of weeks back. I saw the ER doctor who told me the exact same thing that the first ER doctor told me (because I brought the report and she just read it back to me pretty much verbatim.  Ugh). Afterwards, she spoke to her colleague who told her to refer me to the fracture clinic.  So, I went home.

I waited and I waited for a call from the fracture clinic-it never came.

In an unrelated manner (of course), I went to see my oncologist.  She noted from reading my file that I was having issues with my foot.  I told her about the fracture clinic appointment debacle.  She stepped away, came back about 4 minutes later, and had an appointment for me. Huh??? How'd she do that?  To be honest, by this time, my foot was already feeling better.  The appointment was made for Friday morning, so when I got home, I called the fracture clinic to try and change the appointment.  I was told that the fracture specialist is only in on Fridays.  Also, the receptionist also told me that they NEVER call people for appointments...so I was essentially waiting for an appointment that wasn't coming.  Super.

So in the end, I didn't go.  My foot feels better and I hope it stays that way.

I think that's it for now...! :)

xo


Saturday, September 22, 2012

Soo annoying!

So i'm pretty sure I have a fracture in my foot.

I mentioned a few posts back that I got x-rays of my foot, both in clinic and also in the ER.   At the end of the day, the ER doctor told me to simply wear sturdy shoes, and if things did not get better in a couple of weeks, come back. Well, things are not better.

I'm going to be honest-I thought this "wear sturdy shoes" suggestion was rather odd, considering the fact that A-I have a history of foot fractures, and B- my foot clearly has localized swelling at the top.

In this picture, with my feet side to side, you can see that there is clearly a sizable bump at the top of my foot.    That doesn't really seem like a "wear two pairs of sturdy shoes and call me in the morning" type of situation.  But then again..I'm not a doctor.  What I do know is that my last foot fracture didn't show up on an x-ray at all, and it was only after Dr. Fortin ordered a MRI that it showed my foot was fractured in two places.  I wish Dr. Fortin was around.  So now, I'm going to be forced to go to emergency to get my foot checked out when in the past, Dr. Fortin would have just ordered the MRI and made an appointment for me at the Fracture clinic straight away.  I can't get anyone to do this for me now.  I was thinking of getting in touch with my rheumatologist, but he and I don't yet have the same rapport that myself and Dr. Fortin had/have.

So it looks like I'll likely be making an early morning trip to emerg on my day off, Tuesday, in order to get this checked out by an actual fracture doctor.  What a pain! I'm going to waste a whole bunch of time to go to emergency to get told to go to fracture clinic which will waste more time! Gah!

Saturday, September 15, 2012

Celebrities living full lives in spite of their health conditions

I got an interesting message in my email the other day from a website called Everydayhealth about celebrities with various health conditions who are living their lives to the fullest despite their struggles.  I don't normally share a lot of info on my site other than my own thoughts or things that I have found online on my own that I find interesting, but I did in fact find this post/email interesting.  Here is the link-check it out

http://www.everydayhealth.com/healthy-living-pictures/born-this-way.aspx#/slide-1

Monday, September 10, 2012

Transplant Battle Scars-6 Months Post-Op

I did a post back in April that showed my transplant scars 1 month post op. This post has gotten a lot of attention, so I thought I'd do another similar post, this time showing my scars 6 months post op! :)


Inner wrist
1 month post op

6 months post op

Neck
1 month post op

6 months post op


Side or arm/wrist
1 month post op
6 months post op

Hand

1 month post op


6 months post op
Transplant scar

1 month post op

6 months post op

That's it! There has been a lot of improvement in the IV scars.  As for the transplant scar, as it has healed further, it has gotten darker. It is smooth and only slightly raised, even though the photo might make it appear more raised than it is. Notice how the little staple scars around the actual transplant scar have healed and faded quite a bit.  I'm proud of my "battle scars". :-)

Saturday, September 8, 2012

Advagraf Update

First of all, let me tell you how much I'm already appreciating the fact that I'm only needing to take my meds once a day (in the morning). My evening meds consist of omeprazole (which, from what I can see, my nephrologist is trying to ween me off of anyways) and my vitamin D pill (just a small pill which barely resembles taking actual meds anyways). Don't get me wrong-I'm perfectly happy (and willing) to return to taking tacrolimus twice daily if needed, but I won't lie-this once a day business IS the business!

Speaking of business, let's get down to it.  I started taking advagraf a week ago. Since then, I've been asked to do my bloodwork every week instead of every other week...just to make sure things are working well. I did my first blood test since taking advagraf this past Thursday.

Yesterday, I got a message from my transplant coordinator. She let me know that my advagraf/tacrolimus level was a little bit low. I'm currently taking 9mg of advagraf once a day, so I've been asked to "up" it to 10mg daily. The target advagraf level is between 5-8, and my level is currently 3.6, so it's a little low.  Hopefully the 1mg increase will increase my advagraf level to the ideal range.

In other news, I worked a full 20 hours this week, aka, back to my regular number of hours! It's still taking some getting used to.  I'm not experiencing any out of the ordinary fatigue or anything like that, but I'm still getting into the swing of things where my job is concerned. There have been a lot of changes-many of which actually make my job a bit easier...but I have to get used to/get out of the mindset of doing things "the old way".  This will come with time.  I am very much looking forward to now being able to seek out an HR job.  I've worked hard to be able to finish school and get the appropriate qualifications I need, now it's just about finding and securing that job! :)

Anyhow, I'm going to be doing follow up blood work on Tuesday, so hopefully those go well! :)

Monday, September 3, 2012

Goodbye, Tacrolimus, hello Advagraf

I had an appointment at the transplant clinic on Friday.  It went well.

My blood work is excellent. My creatinine has consistently been in the 67-72 range, which my doc says is great. My other blood work is excellent as well. For that reason, I have graduated from twice a day tacrolimus to once a day Advagraf! :)

It's great because I only have to remember to take this essential medication once a day (in the morning) as opposed to twice a day.  Some of my other medications have been removed as well, including calcitriol, valcyte, and nystatin.  I also will reduce my usage of omeprazole to nightly instead of both in the morning and at night.  I will take note of any reflux symptoms and resume morning usage if necessary.

With the changes to my medications, mostly the addition of the Advagraf, I will be doing blood work weekly instead of twice a week for the next 3-4 weeks or so. If all is well, I will be doing blood work once a month. That is a great relief! I don't mind doing blood work, but the less I have to do it is obviously an indication that everything is stabilizing and "normal".

Early last week, my left foot started to hurt me. It hurts whenever I take a step and is slightly swollen on top. So, knowing that I was going to have an appointment on Friday, I decided to ask for an x-ray, so I got the x-ray done.  Later on late in the afternoon, I got a phone call telling me that it "looked" like there might be a small fracture in my foot, and that I should go to emerg for more information.  Dang! Why does it have to be a Friday evening before long weekend??

So I already had plans to hang out with one of my buddies on Friday evening/night, so I decided to go to emerg early Saturday morning.

So Pops and I left on Saturday morning and headed off to emerg.  The wait wasn't that long, however the doctors didn't show up until 10am so that kind of prolonged our stay. Luckily still, I was attended to rather quickly.

The ER doc ordered a few more x-rays which I did.  After that, he looked at them and said that one of the 6 x-rays that were done showed a very tiny fracture in my foot.  He recommended sturdy shoes and avoiding hills, and if that didn't improve my pain, come back in 1-2 weeks.

So, we'll see how that goes...!


Tuesday, August 28, 2012

Working tomorrow

Tomorrow will be my first 8 hour shift in probably 18 months..or about two Decembers ago.

..wish me luck!!

xo

Thursday, August 16, 2012

Shorter Summer Days :(

Firstly, I'd like to thank one of my blog readers, Adams. Adams wrote a lovely comment on my cbox with regards to my fistula and it's appearance. Thank you!

I worked Monday-Wednesday, so my "weekend" began today. In the morning, I went to get my nails re-done. After that, I met up with my friend Jennifer for lunch. I love summer so much for things like this. It's nice outside, you can go out, easily meet with friends, and just enjoy being outside with shorts and/or a t-shirt. But, we're now in the middle of August, and I've noticed that the days are already getting shorter.  We had some really lovely and HOT days this year which I loved. The weather now appears to be more seasonal.  A month ago, I would wake up sweating because it was so hot. When I've woken up the last couple of times, I'm neatly wrapped in my blanket as the weather has dipped these past few days.

One of the indications that summer is over here where I am is when the CNE opens, and the CNE opens tomorrow, and will be open for 2 weeks.  After it's over, it's "back to school" for students...which essentially means the END of summer lol.  Why does it feel like summers are so short while winters seem to go on forever?

Anyhow, I had a great day today just doing things I wanted to do; a manicure, lunch with a great friend, vegging in bed watching TV, and, of course, surfing the web.

Please don't go, summer! I love you! Don't leave me! I CAN CHANGE!!!!!


:'(

Saturday, August 11, 2012

"I get the job done...I work...baby!"

I haven't updated on much outside of relationship stuff in a bit, so I thought I'd write a post about that!

My return-to-work process is going well.  I'm back to work at 75% of my hours now.  I work part time, so I only have 5 hours left to go before I'm back at my full 20 hours.  I'm glad to be back and see my co-workers, but I also can't wait to be at full capacity so that I can apply for HR jobs.  I'm going to be honest-at the advice of family and a couple of friends, I applied for 2 HR jobs. I don't suspect they'll call me back as my file with my employer still lists me as being on disability, but hey, we shall see!

I have a couple of important appointments coming up. Both of these appointments have nothing to do really with my health per se.  I'm not referring to a nephrology appointment, or a rheumatology appointment, or a oncology appointment.  The first one which is coming up next month is an appointment in the vascular department.  I'm getting my fistula assessed for removal.

This is pretty big for me.  I pray to God that my new kidney will last me an extremely long time. So, in a long, long time, if it does fail and I need to go back on dialysis, I'll have to have a catheter inserted into my chest.  If I don't have the fistula reversed, it will just remain there and I assume can be used again in the future if need be.  But, let's be honest here.  I'm a 30 year old woman. I like wearing tank tops, tube tops, short sleeves, etc. But, with the fistula, I feel very self conscious doing so, and I mostly only wear the aforementioned types of clothing in my home or with some sort of cardigan on top. I can wear these things without the cardigan...but the stares, looks, etc can get exhausting.

The second appointment is in October with the plastic surgery department.  It's about my stomach scar that I earned back in 2006 with the botched staple removal .  I'm hoping to have it revised and fixed a little.  I'm not expecting a miracle, but they've got to be able to do something better than this!  Again, I'm a 30 year old SINGLE woman. I know I won't be the sports illustrated swimsuit model of the year..but can we at least get this scar from grotesque to decent?  I think so.

So those are the main things happening with me right now. As always, updates will follow :)

Thursday, August 9, 2012

Revisiting Dating with a Chronic Illness-Part 2

In my previous post, I discussed a first date that I had with a gentleman I had met online- we went out for drinks.  There have been about 13 days between that date and now.

My main concern was telling him about my health and my struggles.  How do you tell someone that? Will they get spooked? How much information do you share and when..and what?  Well, let me tell you how my experience went.

We had just went out for dinner and the evening/night was still young, so we decided to go back to his house and watch a movie, which we did. After that, we got to talking just about whatever, and he told me about a couple of struggles that he had had in the past. His honesty inspired me to tell him something too.  I decided to start with the kidney transplant, it being the most recent thing that has happened to me.

I explained to him that I had a kidney transplant in March and that my brother was my donor. He asked me how/why my kidneys failed, and I briefly explained to him that I had lupus and what lupus was.  He got quiet for a minute..then said "I don't know what to say".

Damn. I guess that's it for THIS guy.

Then, he did speak.  He said "Actually, I do have something to say. I think your brother is a pretty stand up guy for donating a kidney to you, and I think it's great that you have such a strong and close family that supports you.  And this doesn't change anything..."

Those were the words I was looking for-this doesn't change anything. I was relieved that he wasn't spooked by my story or by my condition. As days went on, I explained a few other things to him. I was wearing jeans that were rolled up to about mid-calf. He noticed that I had a knee brace on. I explained to him that medication I was taking caused some damage to my knee, so I wear a brace..and I would eventually need surgery for it.  He noted that he doesn't see me limp or anything, which I thought was great.  I take Tylenol :).

Most recently, I was at his house at around 11:00pm.  After a night trip to the beach, we were both hungry and thought we'd go on the porch and bbq some hamburgers.  While the burgers were on the grill, he asked me why I always wore long sleeved shirts. I froze...why does he have to be so observant?? So I explained to him that I was covering my arm because of my fistula.  I didn't get into specifics about what a fistula is, nor did I show it to him, but I did briefly explain it.  I did say that I am going to get it assessed for removal/revision in September, which I am.  He asked me if I was sensitive about it..and I said a little bit-mostly because of people looking at it and asking questions all the time.  I'm okay with questions, but I just don't want it to be the first thing people ask me when they see me. Afterwards, we ate our burgers, had some dessert, then he said that he should drive me home because it was getting late and I should get some sleep as I had to work in the morning.  He drove me home, gave me a hug and a kiss, and that was that.

The next day, I waited for the usual good morning text from him...it never came.  Late in the afternoon, I sent HIM a text.  No response.  I was sad. Perhaps it was too much too soon, I didn't know. But with he and I being so honest with each other all the time, I thought that he would have been honest with me about how he felt if he didn't feel comfortable with my situation, or even asked more questions of me, but he didn't.

The next day, I went to work as usual. On my break, I looked at my phone and saw it flashing. I looked and saw I had two text messages from two different people.  One of them was from him.  It said good morning...and I was happy to see it.  I replied.  He asked if I was at work and I said yes.

Later in the evening, we texted again and I told him about my day. Then, this morning, I got a good morning text which jokingly asked if I was enjoying the weather (it's raining). Maybe I overreacted..or maybe he just needed some time to think things through..maybe he was just busy...who knows? I haven't seen him since that day, but his texts still seem ok-only time will tell.

At the end of the day, it was, is, and continues to be a learning experience. We've spent so much time together in the past two weeks-on average, every other day. I think he knows and sees the good person that I am...just like I see the good in him too. But, we'll see.

Part 3 to come...

Tuesday, July 31, 2012

Revisiting Dating with a Chronic Illness


When I was on dialysis, I wasn't really confident enough to "put myself out there" and start dating. I'm not sure why, because I know lots of people who do it...but I just couldn't. Just in recent weeks/months, I've gotten back into the swing of things. In the past few days, I've went out with two guys. Night and day. One was a punk, who I will not even talk about, and the other, who I met yesterday, was a perfect gentleman.

So yesterday, after spending time texting for a number of days(I met this gentleman online), he asked me if I wanted to meet. I felt a bit apprehensive, as I hadn't texted with him that long, but I got a good vibe from him. He asked if I wanted to meet him for a drink, so I agreed.

We met and had a few drinks and chatted. He's funny, a perfect gentleman, and "easy on the eyes".  There were no awkward silences in our conversation which was great. The conversation was so great, that 2 beers and 1 coke later for me and 3 beers later for him, we had realized that we had been on that patio chatting, learning, and laughing for 3 hours. He told me about his old school Italian upbringing and the fact that he's old  fashioned. I noticed that he opened the door for me, asked questions, and paid for drinks.

The days leading up to our meeting via texting was great too. Since giving him my number, he texts me every morning to say good morning and ask how I am, as well as in the late afternoon/evening to see how my day went. Very thoughtful.  I at first thought that he was perhaps a bit shy based on his texts, but when I met him, I realized that was not the case.  At the end of the night, he drove me home.  When we got to my place, he gave me a big hug. I could tell by looking at him that he wanted to kiss me, but he held himself back in keeping with his "gentlemanly-ness". Haha.  He sent me a Good Morning text this morning as well.

He's a nice guy and I'd like to see him again, but the thoughts of when and how to tell him I have Lupus, I had a kidney transplant, I have a fistula, I have a huge scar on my stomach, I had my hip replaced...bla bla bla.  I guess the major ones are Lupus and the kidney transplant, but eventually everything else will have to come out too if we decide to continue hanging out.

I guess I'll just have to play it by ear. I do feel like it's important to bring it up at some point soon. Clearly these different issues do not define me, but it's also not something i'd want to hide...ya know?

I'll update on the situation of me and him as time progresses, and if that doesn't work out, my other dating escapades.. lol



Tuesday, July 17, 2012

I Love Weddings!

One of my best friends got married this weekend! It was a beautiful ceremony which was located outside.  It was hot and sunny, but everyone was provided with lovely purple fans to match the wedding's theme/colours. Considering the rain storm that occurred the very next day in the afternoon, the day of the wedding couldn't have been a more gloriously sunny day.

I think back to the past, when Sarah, myself, and our friends were just kids in our late teens/early 20s-going clubbing, bars, out for dinner, the movies...just doing anything and everything that kids at that age do! 








And now, we're "big girls" doing things that adults do (we're adults? ....terrifying!) LOL! Clubs and similar environments have kind of lost their appeal. We're older, smarter...and our interests and tastes have changed. We much prefer doing things that allow us to really enjoy each other's company, like going out for coffee, lunch/dinner, gatherings at a mutual friend's house, etc. Bars and clubs are not completely out of the question, but mostly reserved for special occasions/celebrations...and even then, that's only if the person we are celebrating REALLY wants to do those things (aka still rare)! 


And then, all of a sudden..I'm attending Sarah's wedding!


It seems like only yesterday...we were at our respective homes getting dressed and ready to head to the school dance...or to prom...a club..just anywhere.  I remember how sweet it was when our friend Carolyn got her driver's licence and could drive us all everywhere, so we frequented patios, malls, even a weekend trip to Wasaga beach!

At Wasaga Beach
I couldn't be happier for Sarah for having found her prince charming, Sean! Sean is a super great guy and I'm very comfortable saying that they are just perfect for each other!! I'm certainly glad that myself, Sarah, and friends decided to wander into that strange bar that day-the day Sarah and Sean met! I remember us girls teasing Sarah on the way home-saying she was gonna marry a phd! Well LOOK! :)

Words cannot describe how much I love my friend Sarah. She has been right there with me at my side through thick and thin, and I am truly blessed to have her as one of my best friends. So many laughs and happy moments coupled with the harder and more trying times.  It doesn't matter what it is or what I'm going through, I've always known that Sarah is but a phone call away. I'm honoured and happy that I was able to share this wonderful day with her.

And now, a few more pictures of my bestie's wedding!








This is Kerrie and her husband Jeff-I was one of Kerrie's bridesmaids last year, remember? :)






Friday, July 13, 2012

Shame on you

I know, yet again, it has been a while since I posted. I will try to post more in the future!

Anyhow, I feel compelled to blog about my experience with a company called The French Oven, a bakery in Toronto the makes cakes and desserts.

This issue dates back to June 9, which was a Saturday. I had just finished participating in the Sickle Cell walkathon and needed to go to the grocery store to purchase fruits and veggies for my smoothies, so my Mom and I went to Freshco, a local grocery store.  As I had in the past. I went to the fridge section of the bakery and picked up a couple of the particular dessert in question. It was called a chocolate fudge dessert cup.  It's essentially a single serving cup that comes in a little plastic container. I've purchased a few in the past, and have liked them. So, I picked up some more. 


When my mom and I got home, I was so hungry from having participated in the walkathon after not having had much of a breakfast, I decided to eat a dessert cup while preparing lunch. Having been outside in the brightness of the sun, my eyes had not yet adjusted to indoors.


I took a bite of my dessert cup. Ew..this tastes really weird.  I smelled it. It smelled funny too..the only way I can describe the smell is that it smelled sour. I told my mom, who has a very astute sense of smell, to smell it.  She thought it smelled off too. I looked at the expiry date-the cake was not to expire until the following day.  I closed it back up and put it in a clear plastic bag, then into the fridge.  I decided that I'd take it back to the store.


Later on in the day, I got the urge to take the dessert cup out of the fridge and examine it further. When I did, I was horrified at what I saw.  The plastic that the cake is contained in is clear, which enables me to look at the sides and bottom of the cup without removing the cake from it's container.  It was covered in dozens and dozens of round little mold spores. Wow...I took a bite of that earlier today...


I panicked.  I had just gotten a transplant 3 months earlier, and I was worried that having taken a bite of this mold-laced cake could cause some sort of ill effect.  I picked up my phone and called the grocery store.


I spoke to the produce manager as the store manager was not in at the time of my call.  When I told him what had happened as well as my immunosuppressed status, he was equally horrified.  He asked how I was feeling and if I was ok, which I appreciated.  He told me that he would get in contact with the supplier of the cakes, and if I could bring the offending cake to the store the next day. I agreed.


After church, my Mom and I headed to the grocery store. The produce manager wasn't in, but I did speak to the meat manager.  She was helpful as well.  She took my information as well as the cake so that the store manager could see it when he arrived the following day.

The next day, which was Monday June 11, the store manager called me, but I missed his call as I was at work. On my break, I called him back.  He informed me that he had informed the French Oven of what happened, and that they should be in contact with me.  When I got home, sure enough, I did receive a phone call from Alok Razdan, president and owner of The French Oven.  He apologized, and stated that he would have a courier go to the store to pick up the cake for further investigation, and that he would get back to me no later than Thursday (June 14) with the results.  I agreed.

Thursday came and went with no phone call.  The following week on Tuesday June 19, I called the French Oven back and spoke to Linda.  She told me that Mr. Razdan was not in, but would be in around 10:30am. I left a message.  I didn't receive a phone call back.  On Friday June 22, I spoke to another gentleman. I didn't catch his name. When I asked for Mr. Razdan, he too told me that Mr. Razdan would be in later on in the morning.  I asked him to please have Mr. Razdan return my call before the end of the business day. Guess what? the phone call never came.

At that point, I called the manager of Freshco back and told him what was going on.  He promised to contact the French Oven himself to see what was going on. He also told me to call him back if I did not receive a returned phone call the following week.

 On Monday June 25, Linda called me and left me a voice message.  She informed me that Mr. Razdan had decided to give me "3 dessert cups free of charge" (this was actually 2 free cups, since I did not yet receive a refund for the moldy one). I called back and spoke to Linda. She reiterated to me what she said in the message. I told her that this was actually TWO free cups, since I hadn't received a refund for the first one.  She told me that the 3 free dessert cups is what Mr. Razdan had decided to do.

What disappoints me the most about this whole scenario is the lack of a returned phone on the day promised with the promised info as well as a lack of a returned phone call after I called twice.  I had to call Freshco's manager, who, by the way, was EXTREMELY helpful (not only him, but also the produce manager and the meat manager) to call The French Oven for me. It was only then that my phone call was returned.

Each dessert cup costs $1.59. So in essence I was given $3.18 worth of free product, or 4.77 if you forget about the fact that I hadn't yet received a refund for the first one. In the end, I wasn't worried about getting free dessert cups.  What I REALLY wanted was to receive a phone call back, as promised, with the information he promised to give me as to what happened with the dessert cup I bought. Having worked in customer service my whole employment life...this was a complete and utter customer service fail.  I emailed The French Oven on June 29 expressing my concerns and disappointment.  No response.

I went to FreshCo to collect my "free dessert cups".  The store manager graciously refunded me the one dessert cup that I bought, which I appreciated.  I told him that I hadn't received any phone calls back from Mr. Razdan, and that I had also sent an email and was waiting for a response.  I don't expect that to happen.

All but 1 of the free dessert cups that I got ended up going into the garbage eventually.  All of them tasted off, and all were no where near their expiry dates.

Based on the amazing customer service I received, I will certainly continue to shop at FreshCo. Customer service is EXTREMELY important to me and can dictate whether or not I choose to continue spending my money at a particular company or on their goods and/or services. Freshco's customer service definitely impressed me.

I have given the French Oven ample opportunity to call me back and make things right, but instead I was swept under the carpet and ignored.

Shame on you, French Oven.

Wednesday, June 27, 2012

I'm still here!

I haven't updated in a little while as I haven't had much to update on! So here I go.

I've been back at work 3 times now, and I'm so happy to be back. Everyone is so supportive and SO nice.  Everyone keeps telling me how great I look.  My skin looks healthier, I've gained some weight, and everything just seems to be falling into place.  And, obviously, ain't nothing wrong with getting compliments a million times a day! :)

Next, I slipped and fell on Saturday. I was in my house walking through the dining room (tiled floor) and I wiped out. I didn't know that my mom had just mopped the floor and was in the kitchen mopping THAT floor. I started to slide, but my instincts told me that if I didn't act quick, I was going to slide into "the splits"...and I DEFINITELY did NOT want that! So I caught myself and quickly positioned my body so that I would fall on my but and not in the splits. When I fell, I hurt my right knee, right ankle, and my right hip a little bit. It was quite painful, but I put on a brave face for Mom.  I've been limping around the house for the last few days.  Today was the first day that it actually started to feel better, so I'm optimistic that there wasn't any major damage.  Nonetheless, to be on the safe side, I'm going to get an x-ray of my right knee and right ankle tomorrow.  If I didn't have a rheumatology appointment tomorrow, I probably wouldn't even get the x-ray.

So yes, I have a rheumatology appointment tomorrow!  Speaking of which, I had better write down a list of my medications.  They always ask me and catch me off guard because I cannot remember them off the top of my head...especially with all of the new and different medications that I'm currently on.

So there's the update! If there are any developments with my rheumy appointment tomorrow or with my x-rays. of course I'll report back! :)

Weee!

Thursday, June 21, 2012

More advocating- Organ Donation Awareness

This past Tuesday I participated in another event, with the focus being organ donation/transplant awareness. According to http://www.beadonor.ca, only 25% of Ontarians are registered to be organ donors.  1 organ donor can save up to 8 lives, and save/dramatically improve the lives of 50 additional people. We had to get the word out.


We met up at a school in the Dufferin and St. Clair area where my Dad's boss gave some encouraging words of thanks to all of the wonderful students who came out to support the cause. They all had signs and such, and it was amazing. After that, it was time to light the torch and start the walk.

While my brother and a few others walked, my Dad drove the truck and I spoke through the loud speaker, stating facts about organ donation as well as directing people to visit http://www.beadonor.ca as well as http://www.torchoflife.com. to those on the street on that beautiful day.  It was great, because as we passed by different schools, tons and tons of students lined the sidewalks, cheering, clapping, and holding signs.  They high-fived the walkers as the walked by. It was simply wonderful.

We ended up at City Hall where I spoke briefly of my experience both before and after my kidney transplant.  After that, the walk continued to Toronto General Hospital, then to Queens Park. It was a wonderful event. I hope that when the next event comes, I'll be able to speak a bit more about my experiences as well as the importance of organ and tissue donation.

Below are some pictures and video of the event :)

Before the walk

Words From George Marcello

Pops and the boss

Myself, Papa, Khaled, the boss, big bro. and, of course, the torch of life! 

Handing out high-fives

Walking with the Police bike escort

All smiles from Frank

Big bro with the torch!

What a turnout! That kid near the middle with the blue striped shirt giving me the thumbs out was soo awesome!

More waves and kudos from the students 
Back to the walk

Another awesome reception from another school

How awesome are these kids?!?

Big bro with the torch

City Hall with some students that joined our walk along the way

City Hall

Media trucks

The truck I was in! :)

Something else cool is the fact that I tweeted this:

And got this response from Trillium Gift of life (@TrilliumGift) even though I didn't mention them in my tweet.  Is was pretty rad :-)



Lastly, here's a short clip of some of the students that met us outside during out walk. It was soo amazing, honestly. The horn sound in the background is my Dad using the truck's siren thing. :)



 
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