Sunday, October 12, 2014

I Get By With A Litle Help from my Friends

It's a good thing to talk. Talk about stuff.

I go back and forth when it comes to the above statement. Sometimes...I don't want to talk about stuff, because I know, mid story, it'll make my cry. At the same time, if I don't, the tears that need to be "cried" simply remain inside. That's not good either.

This weekend was one of catching up with friends-good ones.

On Friday evening, it was date night with my close friend and confidant, Mikey. Mikey and I have known each other and immediately connected as friends soon after we met each other back at our first job in a ritzy Italian grocery store. He was 14 and I was 16. Mikey is one of those friends that I can tell absolutely anything and everything. My most embarrassing of stories, even my secret embarrassments..nothing is too embarrassing for me to tell Mike. What I also like about our relationship is the way it has evolved. Back then, we were kids with not a worry in the world. We spent most of our waking moments together, whether it was going to the movies, out to dinner/dessert, or just aimlessly driving through the streets without a destination or a care in the world. Now, we're adults. We have responsibilities, and oftentimes these responsibilities prevent us from getting together as regularly as we did. In spite of this, what I do know is that things will be exactly as they were when we last saw each other, regardless of how many hours, days, or months have passed.

Anyhow, Mikey came by to pick me up so we could go and do one of the many things we enjoy doing together- grabbing some dessert. I wouldn't believe the following story if I hadn't been there-as we drove down the street, did we NOT see the car of the gentleman I was dating and have been whining about these last few posts driving almost right beside us??

"That's his car!!" I yelled at Michael. He, rightfully so, instantly thought I was crazy. Yes Flo, that car, which looks like a million other cars, just so happens to be HIS car? I didn't have my glasses on, but I could see some distinct characteristics which lead me to believe that this was, in fact, HIS car. The back of the vehicle was damaged from a previous fender bender. The license plate wasn't one from my city-it was from another city from another province...just like HIS.

We both got caught at a red light. There was another car between us, but it was clear it was him. I noticed he had a passenger. I'll admit it-I went mad for a moment and contemplated jumping out of the car, opening the passenger door of his car, dragging the occupant out, and spreading her across the street like jelly on toast. "Relax, it's a guy" Mikey told me. Even if it wasn't...I really had no jurisdiction to attack his passenger. But, I won't lie-the thought went through my mind. Since HIS car was on Mikey/the driver's side, I turned my head to look out the passenger window in an attempt to not look "obvious". I say this because as I noticed the vehicle and told Mike, we certainly did...adjust our speed to get a closer look. Very obvious indeed.

Anyhow, we went our separate ways and headed off to enjoy our dessert. What I enjoyed about talking to Mikey is the fact that he gives my advice based on his own experiences. He relayed advice of his own, as well as advice given to him from others when he needed it. I was tired that night, but was sad when the night ended, as I could have stayed there and chatted with Mikey for hours.

Last night, myself and my friend Sadia met up for dinner, dessert, and, of course, debriefing. She also another amazing person to speak to because her experiences and thoughts have been similar to mine, but in a different way than they are with Mikey. See, Sadi and I met in the hospital system, as we both had kidney issues and both eventually received kidney transplants. She knows what it's like to go through these emotions, especially with the health aspect attached to it. Since meeting, we've gone on many adventures throughout the city as well. Again, one of my favourite things to do. Trying new restaurants and just "hanging out" is something I really enjoy doing with Sadi. She's also someone that I can share my inner most secrets with-and trust me-there are few people I can do that with.

She also gave me some perspective based on her own experiences.  In a previous post, I talked about wishing that I was the woman I was a number of years back-I was "tougher", "stronger", and "less willing to put up with shit". There was one factor that I didn't consider that Sadi brought to my attention: Prednisone.

Prednisone is a medication I've spoken about before. It's an evil drug side-effect wise, but works well to control my lupus symptoms as well as minimize the chances of rejection of my kidney. But, that said, take a look at these side effects:
 
  • Aggression
  • agitation
  • anxiety
  • blurred vision
  • decrease in the amount of urine
  • dizziness
  • fast, slow, pounding, or irregular heartbeat or pulse
  • headache
  • irritability
  • mental depression
  • mood changes
  • nervousness
  • noisy, rattling breathing
  • numbness or tingling in the arms or legs
  • pounding in the ears
  • shortness of breath
  • swelling of the fingers, hands, feet, or lower legs
  • trouble thinking, speaking, or walking
  • troubled breathing at rest
  • weight gain


Being on a medication like this coupled with some of the low lows I've been feeling...it could very likely be an issue as well-one that should be explored.

It's ok to be sad, but it's also ok to reach out to those you love when you are feeling sad. This is still a concept that I'm struggling with, but I'm getting better.

xo























Monday, October 6, 2014

A-ha moment?

I may have had one of those the other day.

I've said it before, and I'll say it again. I wear my emotions on my face-there's no hiding. Sometimes, when emotions are low, I can fake it. I can smile, I can laugh, and I can make believe. Other times, when I'm REALLY upset about something, my facial expressions as well as my overall attitude changes.

I was at work the other day and was so upset. I'm so upset that I was lied to, hurt...deliberately, and that I'm so upset that I'm so upset.

Nobody is perfect. But, I do feel that some of these relationships that I shed so many tears about, and these relationships that upset me so bad that I can often go an entire day without eating, or an entire day without getting out of bed about...are often not even that great.

When I'm with these guys, they treat me well.  They take care of me, they make me laugh. But, is it normal for someone to not text you back? Is it normal for someone to cancel plans on you at the last moment with no real reason? Is it normal for you to care so deeply for someone while they're out there still searching for something you thought that the both of you already had?

One guy would simply not text or call me back when he said he would. He would often go days without messaging me. Once he went more than a week without messaging. And I took it.

Another guy, I knew he was out there, dating other girls, even though he had committed himself to me. Like...he wanted to do what he wanted to do, but didn't want me out there meeting other people. Sometimes he would avoid or ignore me for a few hours a day. He would admit it sometimes-he'd say he was just having a bad day, or he was down, or depressed. I'd take it.

What is it about my self worth that I continue to accept bullshit like that? Why am I so afraid to speak up?

Well, someone figured it out for me the other day. I kind of knew...in the back of my head. But the fact that someone ELSE could read me like that caused me to immediately break down into tears.

What is it about me/my self worth that I feel I have to put up with garbage? Well, it's because I, quite frankly, feel damaged.

I'm a woman with a chronic illness. I thank God for the blessing I received in terms of having received a kidney transplant, but that by no means is a "cure" or anything-it's a treatment.  There have been times that I've been admitted to the hospital for days, sometimes weeks. There have been times where I have been so tired that I could barely CRAWL from my bed to my washroom/en suite. Yes, I have a bathroom right in my bedroom that is barely one step away from my bed. Sometimes it's hard.  I'm a woman whose body has been marred by the knives of surgeons, with one major scar being from my kidney transplant, and other scars from my perforated bowel. I feel much better about the latter scar now that it has been revised. But, no amount of plastic surgery/scar revision surgery can "fix". It can make you feel better about yourself-sure...but it can't "fix" you.

That said, when I find a guy, a half decent guy, who is willing to give me the time of day after I have told him just a fraction of the things that are "wrong" with me and he doesn't run in the other direction...I had better hold on for dear life. I feel so "damaged" that I perhaps don't feel like I have the..."right" to comment about how I'm being treated, or what you did to make me mad/upset.  I feel like crying 3 out of 7 days of the week over my wonderful relationship, while not normal, is just what I have to do if I don't want this guy to leave me.

Why.


I'm still..so sad. Rejection kills me, especially since I try SO hard to NOT be rejected, and perhaps it is in that "trying" that is causing these "rejections" in the first place.  This last situation in particular really did a number on me. It hurts to be told that you are loved, and let's get a place together...to have a discussion about your future kids, hell, to even be asked if you were willing to move across the country, as a job opportunity for him came up. Guess what? I thought long and hard about it...and was actually considering it.

I went to a wedding this past weekend, He was supposed to be my date. I can't tell you how overwhelming...sad I was. There was an empty seat at my table-it was for him.  It was so humiliating for me to have RSVP'd as just one, then contact the bride to ask if it was ok to bring a date...then just a few weeks before the wedding, contact the bride AGAIN to tell her to remove my previous RSVP, and that I was coming alone.  My two boys at my table, especially Matt, said the nicest things to me as he knew that I was feeling extremely low. Everything he said was just...right. He told me how I had impacted HIS life by helping him "come out of his shell" and be less shy, especially on the dancefloor.  He told me what an amazing person I am, and how hot I looked that night. In fact, it got overwhelming and I had to excuse myself to go to the restroom to ball my eyes out-both at his sweetness and at my sadness. In the end, I still had a great night-the venue was beautiful...but I couldn't help but wonder how much...MORE amazing my night would have been if he was at my side.

What an idiot.

I don't know what to do in order to try and...attract the right person. I avoided dating for so long-nearly 9 years, because I didn't feel I was ready to devote myself to someone else. After that period ended and I was all healed from my kidney transplant, I felt ready. I felt comfortable.

Why does it have to be so...hard?

Tuesday, September 23, 2014

Hurting

I only just logged onto my blog today and saw all of the wonderful comments that were left on my last post. They honestly made me cry, and I really appreciate the fact that there are people out there, strangers in fact, who care so much that they would leave such kind comments. I really appreciate each of them. I also apologize for the recent collection of "not-so-uplifting" posts.

I suffered another setback. The gentleman that I was dating, as of last night/this morning, is no longer mine.

We had a beautiful dinner that he prepared while I performed sous chef duties. We watched a movie over dinner as time quickly passed. Before we knew it, it was almost 10:30pm. That was normally bedtime, as he has about an hour+ drive just to get to work in the morning. I had been feeling distance between us on and off, and I knew something was wrong. We were supposed to hang out this weekend, but he said he wasn't feeling well.  I knew that wasn't true.  I later learned that he just wanted to be at home..by himself...because he was down, and because he was scared.

I knew that he too was going through struggles as it relates to his career, family..life in general. I met him on a dating website online about 2 months ago. We had talked about removing our dating profiles a couple of times after we had dated for a while and figured out that we liked each other. But, I had noticed that he had never removed his profile...and in fact, signed into it quite frequently.

I asked him about it for the third time yesterday. He finally told me the truth-he wasn't ready.

I was confused, as he was the one who pursued me, asked me out and continued to do so even though I blew him off a bit. He was the one who said he wanted to be in a relationship with me. He was the one who said he wanted us to move in together. He was the one who said he wanted us to go on vacation together in November. He was the one who talked about meeting my parents sooner rather than later. He was the one who caught me off guard when he used the "L" word as we dined by candlelight at a lovely quiet restaurant late one evening. He told me that he was a liar, and didn't mean those things. He told me that he was a bad person, and he didn't know why he did the things he did. I know that his experiences in the past with women haven't been favourable ones, and he explained his fear to me as relates to commitment.

I knew his struggles-his ups and downs. His past unfavourable relationships, his "cons". And still, I was wanting and willing to be there for him as he had been there for me. He would tell me that I was too good for him, and that I was too good for him. At first I thought it was cute, but as he continued to say it every so often, it troubled me.

He apologized.

As I layed there in bed, my head still on his shoulder in complete darkness, I cried quietly so he wouldn't hear. I didn't know what to say or do. I thought of getting up and going home, but it would be a long trek for me-at least 30 minutes by cab, or an hour and a half by public transit.  I wondered, again, why me? What is so terrible about me that relationship after relationship ends in the same (or similar) way? Commitment issues? I decided that I would just stay until the morning, and let him take me home. We shared a few words, as he tried to talk to me, make jokes, etc as we drove down the highway. I didn't say much. I was stuck on the fact that his passenger side seatbelt smelled like women's perfume- perfume that wasn't mine.

It was what I read in his dating profile in the first place that attracted me to him. He spoke about being tired of being in relationships where he was the only one trying. He spoke about looking for someone who could share everything with, which would hopefully result in a long term relationship. Did he lie about that too? Did I "fall for it"?

Honestly-where did I go wrong?

..this sucks. Like...why me?  This. Sucks.

Saturday, September 20, 2014

Maybe it just wasn't meant to be

I wish the "me" of 10 years ago could have a conversation with the "me" of today.

Let me tell you about the "me" of 10 years ago.

She was a strong woman who had been through a lot. High school was blur, as she spent a good deal of it in and out of the hospital. I don't know how she did it, but she did.  

She was fearless. She did what she wanted, and she didn't put up with your crap, her crap, his crap, or anyone's crap. She would cut you off at the drop of a dime. She would think of you after cutting you off...maybe once or twice. But that was it. 

She handled her struggles with grace and courage. Life was unpredictable. She often went to sleep not knowing what news she would get the following day. In spite of that, she still "did her thing". She went clubbing, to bars with her friends, and she met people. She maintained a decent level of self confidence, even though the high doses of prednisone altered her appearance. It didn't matter- her personality and confidence shined through.

I wish I could invite her from the past, as a lot has changed. The old me wouldn't cry 6 out of 7 days of the week, She wouldn't be sad all the time. And if she did get sad, she would remove whatever it was in her life that was making her sad. Today's me doesn't do that. I don't do that because I'm too scared to lose what I already have...even if it's not the most positive thing. Does that even make sense?

I often wonder if certain things in life, for me, are simply just "not meant to be". Maybe I'm having a hard time finding a job because...it just wasn't meant to be. Maybe my ability to have a nice, semi-normal life (whatever that means) is near impossible..because it just wasn't meant to be. In Christianity, there is no such thing as a "previous life". But, if they did/do exist, is it possible that I was a really, really shitty person back then, and I'm paying for it now?

Not EVERYTHING in life is shitty-of course not. I have amazing family and amazing friends. But, as I've mentioned in the past, there are major facets in life where I'm either failing or just beginning, and this makes me sad as hell.

It's hard to get a "linkedin" notification showing all of the friends that you love and went to school with doing so well while you're in the same place you were even before going to school. Don't get me wrong, I'm happy for my friends and want them to do well..I just wish I was doing well too.

It's hard to sign into facebook and see all of your beautiful friends with their beautiful families...knowing that you're really nowhere near that point in your own life.

My life is difficult already-I have health issues to keep an eye on, which means multiple doctor visits, blood work, lab tests, etc. Why does it have to be even...harder?  I wish the universe would give me a break for once...I'm already having a hard time here.


Wednesday, September 3, 2014

"Bad Luck Comes in Threes?"- Revisited

Nearly two years ago I blogged about some struggles I was going through. I talked about what was making me sad at the time as it relates to my health, my physical appearance, and my heart. If you haven't read it, here it is-"Back Luck Comes in Threes?".

I read back on that entry today. In fact, I read it at least a few times a year.

I talked about how upset I was with my appointment at the plastic surgeon's office. Let me be 100% clear-I was wronged.  I was left with a horrendous scar because of the negligence of hospital staff.  In spite of this, they didn't want to help me. Nobody wanted to help me.  I appealed to the plastic surgeon and was told that because this was strictly cosmetic and not "medically necessary", it wouldn't be covered by the government and I would end up paying out of pocket. I appealed to patient relations-I was also told that they would not be assisting me, and maybe I should consider getting psychiatric help to deal with my body issues. In the end, I found a plastic surgeon who charged me much less than I had expected, and I was "fixed". Am I 1,000% happy with the results? Yes-based on what we were working with, the improvement is phenomenal. Am I happy that I had to go through this in the first place? No.  I often wonder how things would have turned out if I had stayed at TGH and didn't go home, then head to TWH the following day. Would this same mistake have been made? Perhaps this is the way things were meant to be-maybe if I had stayed at TGH something far worse would have happened to me. A blessing in disguise I suppose...disguised as a once grotesque, now acceptable vertical line scar below my belly button.

My struggles as far as my career haven't changed much. I'm still working in the same role that I was in two years ago, and I'm definitely more frustrated now than I was then.  Being in school full time, home dialysis, lupus, and multiple doctor's appointments? Guess what-NOT EASY. I busted my tail just to keep up. On top of that, I never was, nor will I ever be, good with the "middle of the pack". I had to either be at the top or very close to it. My refusal to just be "ok" of course made things difficult. Couple regular course work with studying for the NKE with everything else? Dang-crazy. My argument is this-I've worked hard to pass the NKE, go back to school, finish it with Deans List honours and academic awards to boot...and yet, no one wants to hire me.

Lucky for me, a company did take me on as an intern in an HR capacity, so there is progress. It's still a bit difficult for me since I'm still not exactly where I want to be, nor do I feel like I'm progressing...fast enough, but still, I'm further now than I was two years ago.

A funny thing happened.  In the above post, I spoke about a guy I was dating. Let me tell you-this guy was MADE for me. Nobody could tell me NOTHING about him. He was cute, funny, charming, easy to talk to, easy to listen to...and most importantly, I just felt great when I was around him. Butterflies in my stomach were on 10 out of 10 every time I'd hear the special ringtone or text tone I had set special for him. I cared for him more deeply than I've cared for anyone in a long time. I hadn't made an effort to get really close to anyone while I was dealing with dialysis, so meeting and hanging out with this guy made me feel so...brand new. We had an amazing and hilarious time together every single time.

Then, he left. He disappeared.

I had no idea what happened to him or why. He just...disappeared. I called, I emailed, I texted. Nothing. I didn't know what to do, but I know how I felt. I felt like a piece of shit. How could I be so blind? Was there something in our relationship that I didn't see? What was I missing? Why did he just up and leave me like that? Then ignore me?

I can't even begin to describe how sad I was. I blamed myself. I went over every conversation we had in my mind with a fine tooth comb, thinking of all the things I should or shouldn't have said. Heaven forbid someone should say something very simple and otherwise normal to me at that point in time-I would burst into tears. I was the definition of a basket case.

I never FULLY got over it. But then...a year later, he and I reconnected. We picked up where we left off, and everything was well in the world again. "Don't do that to me again!" I exclaimed. "I won't" he said happily.

Until..2 months later...he did the exact same thing. Again.

Fucking. Shattered. Even worse than before. And...so mad at myself. Mad that it happened again. I really believed things would be different this time-I really did with all of my heart.

They weren't. What's worse?

I prayed.  I prayed for God to bring him back into my life because I simply could not see myself with anyone else. But that prayer fell on deaf ears.

Until yesterday.

He sent me a text to apologize.  He can't stop thinking about me. He wants to pick up where we left off. Again.

This is what I prayed for. I wanted him back.  I was speechless because this isn't want I thought would happen-I never expected to hear from him again. But I did. And here we were.

I took me a long time to really want to date again. I didn't trust. In fact, I still have trouble. And yet, here I am, with him wanting to give it a go for a 3rd time.

I'm seeing someone else now. He makes me laugh, he has a good heart, he's generous, and he gives good bear hugs.

In spite of the tears and disappointment, I will always hold him in my heart. I loved him. This is why it was so hard for me-I loved him SO much... and yet he was so easily able to walk away from me, never looking back.  Even if I wasn't dating someone...how can I go back to someone who admitted to me that he left me because of his own commitment issues? He said he has changed..do people change?

What I know is this-I'm sad. I'm sad that he left me like that in the first place, and I'm sad that I felt so...damaged after it happened.

I don't know what the future holds, but right now I'm content with the gentleman that I'm with. We have a good time together and we both have a silly sense of humour. I think I'll keep him for a while.

It's crazy how things change, people change, and circumstances change. Who knows-maybe I'll revisit this post again and I'll have a job in HR and I'll be announcing my engagement or something-who knows. I just hope that "luck", if such a thing exists, gets a bit better for me moving forward.

xo

Sunday, August 31, 2014

Life

The last number of weeks have been busy. Let me try and brief you on what's going on:

Last month, I was successful in securing a part time, work from home HR Coordinator internship with a not-for profit organization. If you keep up with my blog, you'll know that I have been a bit frustrated and at a loss as to what or how I should go about securing an HR role, with my main obstacle being my lack of experience.  Thankfully, this company decided to take a chance on me and give me the opportunity to gain some valuable experience which I can put on my resume. This will hopefully help me in the future when it comes to getting a paid, full time role.  So far so good- I really like it. There is a lot of research and learning involved, and I look forward to the next number of months of work with this organization. I am doing this internship in addition to my current/previous job at the bank.

Next, just 2 days ago was my father's official last day on the force-he has finally retired! My dad has been on the force since 1978 and has accomplished such greatness in that time-the type of greatness that could take several lifetimes to achieve.  His work in the community has helped bridge the gap between youth and the police-a relationship that can sometimes be strained due to preconceived notions about what "at-risk" youth OR the police are about. It makes me so happy to have such a positive, strong, and selfless man as my very own father. His retirement party is coming up in a couple of days and it's going to be a big one for sure. After retirement, my dad will still work with the police, but in a chaplaincy capacity.

What a great man.

What a proud daughter.

If you follow me on instagram, you'll likely already know that I went to Florida with my mom and dad in July. It was an absolute great time.  We drove down in the RV. It was amazing for me, as this is the first time I've done something like this since the transplant. What a blessing to be able to do such a thing and not need to worry about coming up with hundreds, even thousands of dollars for dialysis, or worry about getting sick. I didn't get sick once while we were in Florida, on our way there, or on our way home. Again, what a blessing.  The only hiccup we experienced was an issue with our transmission on our way home. We were in Tennessee in the middle of the night when I was woken up by the sound of my mom yelling my name, telling me to "come come come!" The RV was full of smoke. It turns out there was a leak somewhere near the transmission so we were leaking oil...so essentially, we were driving this huge RV with no oil in it. We were lucky enough to have been towed to a great repair shop with lovely, honest mechanics who got us up and running in a little over a day. It was an adventure to say the least, and I actually look forward to going back to Tennessee to visit our new friends at the repair shop in the future.

One of the most important updates-I'm an aunt! My brother and his girlfriend brought my lovely niece, Mia, into the world exactly one month ago. She's an absolute gem-I'll share pictures in the near future! :)

That's all for now I think!

Where did the summer go?? :(

Friday, August 1, 2014

Prescription for Disaster!

Let's face it-the main topic of conversation for my blog is a topic that isn't necessarily the happiest of topics to discuss. In spite of some of the horror stories I've shared, you'll find that often times, I take a humorous approach to my stories. But why would you take a humorous approach to such a thing! This is serious! Well, there are a few answers to that. One, sometimes, some of the stories of things I've been through are so ludicrous that I actually find humour in them. Secondly...to me, at the end of the day, Lupus is something that I'm just going to have to deal with, and if I can't laugh at myself sometimes...c'mon!

This is why I was happier than happy to get my hands on a copy of the book Prescription for Disaster, written by Candace Lafleur!


If you have a chronic illness or a loved one with a chronic illness, you will definitely identify with many of the topics Candace touches on.  I couldn't help but chuckle at some of her stories, as many took me back to times when I've went through similar things.  Candace talks about being in the ward of a hospital and all the characters she has come across because of it. Screaming, complaining old lady? Yup-been there, done that! Dealing with student doctors? Hospital food? C'mon, if you've spent 5 minutes as an in-patient in a hospital, you've dealt with all of these things!

Now, what I really like about this book is the humorous approach that it takes.  Yes, chronic (and acute, for that matter) illnesses are serious, they're bad, they're awful...yeah...we know. But if you've lived it and have experienced the things that come along with it, you'll find that there is actually quite a bit of humour to be found in a lot of the situations we go through and experience.  I talk a lot in my blog about doing your best to remain positive in spite of everything. To me, it's SO important. That said, to me, this book is great for those who can find humour in some of these crazy things that happen, and also to those who perhaps have trouble looking past the negative side. This book will help you see that you're not the only one that these crazy things happen to, and maybe if you looked at it in a different way, you might let loose a chortle which will perhaps lift your spirits a bit! :)

Check it out-you won't be disappointed!

http://www.amazon.com/Prescription-Disaster-funny-falling-apart/dp/1499595719/ref=sr_1_1?ie=UTF8&qid=1402667166&sr=8-1&keywords=candace+lafleur

Tuesday, June 24, 2014

And today I accomplished...

...nothing. Nadda. Ziltch.

Today was one of those days that were doomed from the get go.
I woke up today at the time I would normally wake up if I was gonna get up and go to work-5:45am-ish. I realized that my stomach was absolutely KILLING me. Why, you ask? One of the many benefits of being a woman-terrible, terrible CRAMPS.

Now, I discussed my awful cramps with my gynecologist when I went to see her last month. She suggested I take a small dose of naproxen to help with the pain. I did this last month, but my creatinine has been on a steady increase- my baseline is in the 90s (or 9.0ish) and has gone up to 120-ish (12.0ish). Not normal. Now, my transplant coordinator thought that me taking the naproxen might have had something to do with the sudden spike in my creatinine, but I disagree. It seems like my creatinine was on a steady increase ever since I stopped taking that horrid drug known as prednisone.

But, as usual, I digress. I woke up today with the thought that I would do some blood work today, but not so. I cancelled my blood work appointment at the local lab and decided that I would go on Thursday (the day after tomorrow) as my cramps seem to settle down after the first couple of days of my period have passed.  So, I took one single OTC naproxen pill this morning. Let me tell you how that pain got up and left within 30 minutes. It was a thing of beauty.

Now, what's the big deal with taking Naproxen, you say? Well, naproxen, along with advil, are NSAIDs, or non-steroidal anti-inflammatory drugs. NSAIDs and kidney issues don't seem to go hand in hand. I think it might be because NSAIDs are metabolized in the kidney, whereas drugs like acetaminophen, or Tylenol, are metabolized in the liver. Now, the above paragraph may be completely made up and I'm still in the "I'm too lazy for this" mode, so I'm not really into doing too much research right now, but feel free to correct me if I'm totally wrong. The same goes for proofreading this post.

So, the whole point of me taking them was to take it sparingly.  It has been well over 14 hours since I had taken one single pill and I still feel good in terms of my cramps. It's crazy how the one drug that can very quickly and easily resolve this pain is not the "best" for me.  And no, taking a Tylenol for cramps is not sufficient and is, in fact, an exercise in futility.

Oh, I was also a crying, dribbling mess today.  Just because.

  

Friday, May 30, 2014

Gyne-NOOO

So first, let me get this out of the way.

When you have a chronic illness/are immunosuppressed (lupus/kidney transplant, for example), it is absolutely a good idea to get your pap smears on an annual basis. Do as I say and not as I do, with the "as I do" being that it has been about 4-5 years since my last pap.

Well, I had one just a few weeks ago.

So, why did it take me so freaking long to get another pap??! Good question! I'll tell you.

Let me be clear when I say that my first 1-2 paps were the things nightmares are made of. They were the most uncomfortable experiences EVER.  I prepared myself well before going to see my gyenecologist to have my first and second paps done. I did everything that google told me to do-I took a tylenol or two about 45 minutes-an hour before my appointment. I practiced taking deep and calm breaths in the waiting room before I got called in. I did all of that. But, once I got called in, dis-robed from the waist down, and put my feet into those stirrups, I was a ball of tense-ness, and all of the relaxation techniques I did in the waiting room did absolutely nothing for me.

And this was BEFORE the pap even started. Once it did start..man. I got as tense as tense can be. And some advice-don't "get tense" while getting a pap. It's definitely one of the things you don't want to do. What should have lasted less than a minute lasted much longer through my screams and cries (so embarrassing). For my second pap, the doctor had to use the "mini callipers" to do my pap. Trust-it still hurt.

We're not even going to get into how uncomfortable a transvaginal ultrasound is. Google it. I'm afraid that the pain and discomfort might come back if I blog about it.

Anyhow, fast forward to two weeks ago. After having to cancel and reschedule my appointments a couple of times due to my knee surgery, I finally made it to my appointment to have my pap done.

I checked in with the receptionist, sat down, and began to do the crossword in my free newspaper. Then, about 20 minutes later, it hit me. I hadn't done ANY prep. No tylenol, no breathing exercises...nothing! I tossed my crossword aside in a panic and grabbed a tylenol from my purse and gobbled it down. Oh man, oh man...I've been sitting here for 20 minutes..they're going to call me any second...how could I forget to PREPARE MYSELF!!?

After about 10 minutes, I was called in to see the doctor before the doctor. She was a pleasant doctor, and made me feel at ease. We went over my history, and she asked me why it had been so long since my last pap. I was honest.  "Searing pain" was my response.  Welp, speaking of searing pain...time for your pap!

I got prepared and got into the stirrups. I felt more comfortable this time-I'm not sure why. When the doctor came back, she told me what she was doing as she did it, and reassured me throughout. This time, what google told me was true. I felt pressure. Not pain per se, just a bit of pressure. No where near the nightmare I remembered from years back. When it was all over in about a minute or less, I was actually surprised at myself. What the heck was MY problem the last few times?!?

My "doctor after the doctor" came to talk to me and reiterate the importance of having a pap done once a year due to my condition. Based on my most recent experience, I will have no problem in maintaining this schedule for the good of my health.

So that was my most recent experience with having had my pap smear.

The moral of this story is this; stop being a baby and go get your damned pap done. It's important!



















Thursday, May 29, 2014

Wish Me Luck?

So as I've mentioned many times, I went back to school and took HR. Finding an HR role has been difficult to say the least, but I've certainly been looking.

Recently, a few entry level HR roles have come up within my current place of employment. I've applied for them and have put my best foot forward. So, I'd ask you to keep me in your thoughts. Cross your fingers, pray, whatever it is that you do...please do that for me!

You know, I've been here looking for a new role for a while now, as I really feel like it's time for me to get out of what I'm doing right now. I've been doing what I do now (CSR) for nearly 11 years...and I think it's time to move on.  But, at the same time, I feel almost...paralyzed with fear when it comes to moving to another department, or another job.

I'm afraid of getting sick. A day here and there isn't bad. But lupus is so unpredictable, and my hemoglobin levels have been less than stellar these days. I really, REALLY want to get out of what I'm doing right now, but, I know that if for whatever reason I had to take time off from my current role due to illness, my role would still be there for me when I return.

I know that It's not really a good idea to live in the "what ifs", and just go for what you want. But, when you have a chronic illness, it's always something that lingers in the back of your mind. The last thing I want to do is fail, or have to give up my role. All I can do it my best, I suppose, and hope that wherever I end up has management and colleagues as understanding as they are in my current role.



Wish me luck.

xo

Wednesday, May 28, 2014

Ouch, my STOMACH!

Yes, I know-I've been slacking. Sue me!

Now that THAT is out of the way, let's get back to business.

First of all, my birthday was on May 11 *sings happy birthday to self*

Now, let's REALLY get back to business.

At the beginning of last year, after being diagnosed with c.diff, I began experiencing weird stomach pains that my specialists did not equate directly to the c.diff. These stomach pains were mainly activated by my eating pretty much anything.  It was awful, because I was so hungry, but I knew that once I ate to satisfy the hunger pains, these other, different pains would come about. I would eat my meals fast, as the pain would often begin before I could even finish my meal while eating at a normal rate/speed.

Now, I seem to be having similar pains again. They're not as severe, but they're close. I've decided that I should keep a food diary to see if any specific food triggers this response. What I know for sure is that the one meal that I can rely on that won't cause this response is my usual work breakfast- oatmeal with almond milk.  I wondered if it could be gluten related, but these pains seem to be triggered by almost anything. I can't even eat a salad, nor a green smoothie any more-it kills my stomach. Now, when I say "any more", I mean since having my knee surgery. I wondered if it was the raw greens that was affecting my stomach. At my desk at work, I have a small container of almonds. I ate maybe 3 or 4, and I was in absolute agony. One day after a post-op appointment with my ortho surgeon, I bought a small bag of almonds from the drug store. I ate a few.  AGONYYYY.  Like, what the heck?

What makes this difficult is the fact that it appears to be so random. I'm really going to have to make a good note of my meals for the next little while, including ingredients and spices. I need to figure this out because I'm really missing certain things...ESPECIALLY my raw greens/green smoothies.

Friday, May 9, 2014

Full day back to work

Today was my first 8 hour day back to work since my knee surgery. It was a long day because I had a lot of complicated and time consuming client problems to deal with, plus next week is casual dress week for those who donate money to a charity that my employer is working with. My manager is away, so it was my job to go around and get the donation money, create check lists, etc. All in all, I made it through, but I'm glad to be home to relax. In any other situation, I'd have been back to work at full capacity by now, but for some reason, my hemoglobin has been very stubborn! It's lingering in the 92-93 level (9.2-9.3 for my downstairs neighbour American friends). It's been like this for months, in spite of suffering through months of iron pills (iron pills are the devil when it comes to your stomach). Looks like it's more spinach and steak for me..!

This weekend will be a busy one; I'm doing birthday related activities with friends (my birthday/mother's day is on Sunday). I'll be meeting one set of friends tomorrow for lunch, and another set for dinner. With Sunday being mother's day, that day will likely be more geared towards mother stuff :)

Well, the very act of leaning on one arm to type this entry is making me lazy/tired, so I think I'll end it here. Let the birthday weekend festivities begin! (Can't wait to get my free starbucks-mmmm!)

Thursday, May 8, 2014

Fabulupus!

Ok, I know, I've (again) been slightly MIA these past few weeks- but I definitely had to hop on today to talk about a great book that's coming out soon.

It's called Fabulupus! What's better is that a friend of mine is one of the writers! I had the opportunity to read a few chapters from this book, and I was really impressed.  As a teenager, when I was diagnosed with lupus, so many different things ran through my mind. I had no idea what the future had in store! Would I be able to work? Would I be able to finish school? What about relationships and life in general? Of course, being the person that I am, I turned to and read different books focused on lupus in an attempt to gain some insight into these concerns of mine.  While there were many books out there with a great deal of information, not many were geared towards ME as a young person. There were books geared towards the very young (like children) and for adults (married with children). As a teenager, there's so much to worry about as it is, never mind adding lupus on top of it. I wish I could have found a book that was "written by us, for us", so to speak.

Well, look no further, as Fabulupus is exactly that! What's cool about this book is that it's written by people who have (and do) experience the same struggles as I (and many of you, I'm sure!) did back then. 

Fabulupus is an easy to read guide, both for people with and without lupus.  The information in Fabulupus is practical, useful, encouraging, and fun! It reinforces the fact that life does not end with lupus-you can have lupus and still go on to do great things in life and continue to fulfil your dreams.

This book touches on important subjects that are catered not only to teenagers, but to young people all the way up to those in their 30s+. It discusses topics like school, working/careers, travel, etc. I wish I had a resource like this when I was younger, as sometimes I just felt alone and didn't know what the future would hold for me. Even as a 30-something year old, I still have those moments and thoughts of uncertainty. Having the support of your family and friends while coping with lupus is absolutely great, but there's something comforting about having someone who has experienced your struggles first hand say "Hey-I've been there..and it's gonna be okay".

Keep your eyes peeled for this one!

Wednesday, April 16, 2014

OMG-has it been a month already?!

I promise, I'm still here!

I'm battling a cold/sore throat. I've been battling it since I went back to work a few weeks back (coincidence?).

It's also tax time...so tax time makes for a busy Miz Flow.

I'm also still quite tired...hemoglobin is just lingering in the 92 area (or 9.2 for my american friends).

Right now, I'm in bed drinking hot water with manuka honey and a bit of lemon. Yes, lemon. Is it the best for my reflux? Definitely not. But my throat actually gets so dry that it HURTS at night, so I thought I'd try drinking some of this brew before bed. Hopefully it doesn't turn into horrible reflux and wake me up in a panic..you know what I mean. You know when something acidic shoots up your throat while you're asleep and you wake up in a flash and jump straight out of a horizontal position into a vertical position like that girl on the exorcist?

Yeah, that.

Back to my manuka and lemon.

Xo

Sunday, March 23, 2014

It's So Hard To Say Goodbye To Yesterday

My iPhone started acting crazy yesterday.

I would be looking at an app or surfing around, when all of a sudden, several vertical lines would appear on the screen, then it would just shut off. After shutting down to black, the apple logo would appear, indicating that the phone had shut off and was restarting.

This is annoying, I thought. I take very good care of my electronics. I do plan on getting a new phone in the fall, though. But that's not because I had my current phone-I certainly do not. It's moreso because this phone was my first iPhone (iPhone 5) and I underestimated my shutterbug-ism as well as my app addiction. For this reason, I got both myself and my brother the 16gb phones. I would have been better with the 32gb, or even the 64gb. But 16gb just doesn't cut it-I need more space. So, I thought I would wait until the new iPhone comes out, likely in the fall, see what it looks like, how it operates, how many phones come out (I think two different kinds), then go from there. But-had it not been for the lack of space, I very likely would have held on to this phone for another year, making it 3 years..probably the longest I've kept any phone, except for my very first cell phone back in high school in 2000-my good ol' samsung sch 3530. Oh yes, I remember the make and the model.


I wanted this phone so bad that I sat on the phone for hours calling different Bell stores trying to find it. I tried to order it through Sears using my mom's Sears card, but then, even though they said it was in stock, it wasn't. But, they still charged my mom's card. Then, instead of refunding it, they charged it again. It was a nightmare. But, it did eventually get resolved.  But then, on that fateful day, I thumbed through the phone book and called a Bell store in Chinatown. 

"Do you have the Samsung SCH 3530?" I prepared myself to say "ok, well thanks anyway", and hang up, as I had done dozens of times before.

"Yes we do!" he said.  

..what?

"Well...how many do you have??" I asked

"We have six in stock" he said.

By the way, don't ask me how I remember all of this. I have a really good memory for odd things.

"Well...can you hold one for me?" I asked. He enthusiastically agreed. What a friendly fellow.

Now, it was time to get down to business.  I was too young to have a credit card, and a credit card would be needed to get this done. So, I called my sister at work. I had her fax me a letter with her signature, giving me permission to use her credit card, which was in her drawer, to get this phone. She promptly faxed it over to me. I then snatched up her credit card and TOLD my dad that he was driving me to China Town to buy a phone. 

Huh??

"A cell phone??" He said.

"Yes." I replied simply.  At this point, it didn't matter much. If he didn't drive me, I'd take the bus.

So, into dad's van we went and we were off to China Town. I got my new cell phone without incident. But, I'm gonna be honest with you. They actually didn't understand what this mysterious fax was that I was trying to give them. They just kept saying "ok, ok, ok". I knew they REALLY didn't get it when they thanked me at the end of the transaction and called me "Liz".  I have never been without a cell phone since, and my cell phone number has remained the same too.

Fast forward back into the present. I hope this issue that my cell phone is having gets resolved through this iPhone restore procedure I just completed. Prior to restoring my phone, I was sure to back everything up to my computer and also to the cloud.

The process was quite quick-no more than 20-30 minutes to back everything up, wipe my cell phone clean, then put everything back on.

Most of my apps and settings returned to the phone...except a few. Some were apps that I could very easily re-download, or, if the app no longer existed, there are tons of substitutes. But there were two that I was initially upset about: Note'd and photo safe.

Note'd is like a diary. I used this app to talk about heartache-all the things and people that upset me or made me sad. Lots of "why me's" and "this is not fair's". Photo safe was a collection of pictures under lock and key. pictures of people and things that made me upset.

In the end, it was probably the right thing for me to get rid of these destructive apps.  There was and is nothing wrong with these apps, but just what they were being used for.  I didn't use or go into these apps much-maybe once every few months to be honest. But the point is...they were still there. They didn't NEED to be there...and now they're not...and I'm not mad about that. Perhaps it was a blessing in disguise- a forced "let go".  Even if my phone ends up not working for real and needs to be replaced, it was (and is) an annoying, but perhaps slightly hidden blessing.

xo

Update: I called Apple and they told me that my phone needs to be replaced, so I'll be heading to the apple store later on this afternoon to get a replacement phone. Out with the old, in with the new..?

Update 2: I got a new phone to replace the old/broken one. Upon physical examination by the "genius" at apple's genius bar, the top part of my screen seemed to be lifted, almost like my screen was in the beginning stages of popping right off.  The apple employee also asked me if I seemed to be having problems with battery life-I responded yes. He said that the reason my phone was shutting off sporadically and showing those vertical lines was because my battery was defective-it was "swollen". This could have happened for a number of reasons-just a defective device, use of non-apple approved charging devices, etc. But in the end, and thanks to AppleCare plus, getting my phone replaced was relatively quick and painless, and did not cost me a dime :)

Saturday, March 22, 2014

Mmm..Pamela's butter shortbread..

I love shortbread cookies.

Just thought I'd get that outta the way. 

Now, as I blogged about a few times, I've gone gluten free before. I did it for a whole year. It was difficult because I love cookies, cakes, pasta, bread...basically I love gluten-y things. When it comes to pasta, rice pasta was a great substitute as I found little difference between rice pasta and regular semolina pasta, especially after sauce and everything has been added in. But, bread was an absolute nightmare. I tried a couple breads that were just dreadful. One loaf of bread that I bought was so crumbly and weird that I couldn't even begin the THINK about putting it into the toaster, lest I destroy the bread, and more importantly, the toaster. For that reason, it simply wasn't worth it for me to buy or eat bread, so I cut bread out altogether. 

Cookies and sweets were difficult too. I bought cream sandwich typed cookies (think Oreo) and they were very "meh". I also bought a gluten free cake mix which my mom made for me. It was also very "meh" (at best). So again, I just didn't bother eating sweets at all for the most part. 

I was browsing the website well.ca the other day and came across some gluten free shortbread cookies. They were called "Pamela's Butter Shortbread". Of course I kind of wrote it off immediately in my head due to my previous experience with gluten free cookies. But then I thought-what's the harm in looking at the reviews? So I navigated over to the reviews, and people were just LOVING these cookies! The reviews were all excellent. But, were these reviews coming from gluten hating people who were either used to the weirdness that sometimes comes with gluten free products, or people who don't eat or have never eaten gluten? Well, the cookies cost about 4 bucks, so I thought...what's the harm? I ordered a box.

The cookies arrived yesterday: Pamela's Butter Shortbread-wheat free & gluten free.



There are the cookies' ingredients and nutritional facts. Meh, It's not a stalk of celery but I'm also not gonna bust outta my jeans either.



Ooo, agave syrup. 


The cookies are packaged in little stacks like this. There are 3 cookies in a stack.


Here is a cookie in my hand to show you how big they are. I do not have gigantic hands, nor do I have itty bitty hands-just normal hands with slightly longer than usual fingers :)



When I bite into a shortbread cookie, I expect buttery, sweet, slightly salty, crumbly goodness. Amazingly, this was the case for this cookie! Having in mind that it's a gluten free cookie, the crumbly aspect wasn't AS prevalent as it is in a "regular" non-gluten free cookie. But that did not take away from the scrumptiousness of this cookie.


I ate two and then stopped myself, lest I eat the whole box without even flinching (I've been known). These cookies were extremely yummy-best gluten free cookie I've had so far. Pamela's Butter Shortbread gets 4 and a half "get in ma bellies" out of 5. Definitely worth a try. 

And that is my Pamela's (gluten free) butter shortbread review! 

Monday, March 10, 2014

Skin peeling after swelling?

My leg swelling has gone down considerably since my TKA.

Now, anyone who knows me knows that I'm very serious about my skin moisurization. I ensure that my skin is always well moisturized, and my skin is always quite soft as I exfoliate with every single shower. 

That said, I've had some minor peeling of the skin on my right foot (the same foot as my knee replacement). My other foot does not have this peeling. I can only assume that this peeling is due to the stretching of my skin after the knee replacement, or perhaps it's due to the fact that I haven't exfoliated that foot at thoroughly as I have the other foot as it was difficult to reach that foot for a while after surgery. Who knows. But I'll continue to keep up with moisturizing and exfoliating and I'm sure it will resolve itself. 

Mmm..yummy.  lol

Sunday, March 9, 2014

Considering the future

Spending a lot of time by myself these last few weeks has really got me thinking. I've been thinking about the future a lot. I'm really looking forward to hopefully (my goal is on or before my birthday in May) securing a proper HR position. I've also been thinking about cleaning up my finances and getting my own place-perhaps a condo or a condo town home (as long as shovelling is included!)

I'm going to be honest. I thought that at this point in my life I'd be a lot...farther than I am right now. I thought I'd be married by now, have at least 1 kid, etc. I know that not everything happens the way WE plan it, and God knows that I'm not one to "settle", but I also know that my circumstances have played a role in my future.

I've been apprehensive about applying for full time jobs in the past. I'll admit it-I've been scared. Scared that I couldn't do it. I was afraid that something would happen with my health and I'd have to miss a whole bunch of days. I'm still scared about that.  I've missed wok because of sinus/ear infections, c. diff, stomach aches, etc...never mind the big stuff, like..joint replacements, kidney transplant, perforated bowel, etc. But, God willing, the real MAJOR surgeries have been dealt with and I can now progress without looking back.

I love to shop-this is no secret. But I've decided to cut way back on my spending habits so that I can save more as well as pay my bills. This way, I can hopefully get my own place. I've been fantasizing about it-I've even started looking online at different units and different town homes...just to see what's out there.  Hmm..maybe I'll play lotto max (the lottery) this week...

No but seriously, as I was saying above, I thought I'd be married and stuff by now, and already living in my own house or my own place with my husband. But, that's not where I am in life right now. Maybe that's what's in store for me, and maybe not. But, I'm not going to be that person who is 40+ years old and still living at home with her parents. In fact, I think living by myself would be a great thing. Being independent, making sure everything is within budget, etc..these are my goals for the next few years.

I don't know that the future will hold-I may meet my husband tomorrow. I may already know him...but I just don't know that he's my future husband yet. Who knows? All I know is that...I'm looking forward to making a change.




Sunday, March 2, 2014

Um..What?

I got lucky with the timing of my knee surgery. My very last day of monthly mensi was one day before my knee surgery. I was very glad about this, as I knew the last thing I wanted to worry about while going through the agony that is knee surgery recovery was my period. I didn't want to worry about getting up several times a day to change, adjust, etc.

Well, I must say that the days and weeks following my knee replacement...I was in a LOT of pain. Like, mega pain. Like, these morphine pills are a joke pain. Like, these oxycodone pills are also a joke pain.

So I looked at my calendar and the day my mensi was supposed to start came and went (around mid month). Good...again, one less thing to worry about. I figured, as has happened to me in the past, my body decided that it was currently under too much stress, so it did me a favour and decided that I didn't need to have my period this month. Well, that, or I was pregnant. And I'm not pregnant.

In the early part of February, I could barely deal with the amount of pain I was in. I actually felt like I was in an abnormal amount of pain. I was so close to having my Dad take me to the hospital or something because this simply was not right.  When I began physio, I couldn't do ANYTHING that they wanted me to do. I took my pain medication 45-60 minutes before physio as instructed. It still didn't help. Getting from the house to the car to drive to physio was torture. Getting from the car to my house after physio was even more torturous. Couple that with having to do this in the winter, where the ground was slippery and the sub zero temperatures zapped directly through my knee like a laser...it was nothing short of awful.  I really didn't think that the given number of physio sessions would be enough. I looked at everyone else that was at physio and thought that they were all stronger than me. Mind you, I had no idea what kind of injury/surgery they had, or how far along they were in their recovery...but that's how I felt. But, it didn't matter. I'm young. They're old. My recovery should be going much more quickly than it is.

On my first day of physio, I asked one of  the therapists what the procedure was for getting more physio sessions tacked on at the end, as I simply knew that I would be no where near ready to "go out into the world on my own" by the time my last physio session was due. 

But, through the pain and through the tears, I muscled my way through my physio sessions. There has been an amazingly huge turnaround from how I felt at the beginning of February vs how I feel now.  I was skeptical-I won't lie. But I've managed to get to a point where I'm barely reliant on my cane, and don't use the walker at all. I only use the cane to minimize extra stress on my knee, but I still practice walking without it and going up and down stairs without it. 

I got really irritated at physio the other day. Perhaps I shouldn't have, as perhaps my anger was not fair. But nonetheless, I was annoyed.  I was doing the physio class today instead of the one on one as there was a miscommunication as it relates to my schedule. In this room are two parallel bars that are at about upper thigh level for me. The bars are quite lengthy so that several people can use the bars at once. It is meant to help people when they are walking, doing squats, stepping up and down a box that a physio puts on the ground to help with building strength, coordination, and, of course, simply practicing walking up and down stairs of various sizes/heights. I was in the middle section of the bars, and was gripping one bar with two hands while I practiced going up and down on my toes. Another lady, an older lady-perhaps in her mid 60s, was at the end of the bars being assisted with her own exercises.  She couldn't have been more than a few weeks post-op.  While a physiotherapist instructed her on an exercise to do (stepping up on a low wooden box), she did it a few times then stopped. She said "I can't do it". She then gestured towards me "She can do it-she's young so she can do it. I can't". It burned me up. Just because I'm young it doesn't mean I don't feel pain.  Just because I seem to be very mobile right now, it doesn't mean I was this way 2 weeks ago. I turned around so that I wouldn't have to look at her.  Maybe I overreacted and was unjustified with my annoyance...but yes-I was annoyed.

Anyhow, this was a maaaajor tangent. Let me get back to the point. 

I didn't expect my period to come again until mid-march. I've been feeling much better as it relates to knee pain/flexibility, and for that reason the number and frequency of my pain medication usage has decreased. Imagine my surprise when my mensi decided to show up today-exactly 17 days late.  Why? Why couldn't you just wait another 10 or so days until you were actually supposed to show up?

I spoke in another post about lupus and irregular periods. Since my kidney transplant, however, my periods have been perfectly predictable.  So in this case, it would appear that my body was so in tune with the pain I was in that it didn't skip my monthly mensi entirely...it just...put it on hold?

I am really interested, moving forward, as to when my next mensi will come. Will is show up again in a couple of weeks? Will this be my new cycle? Only time will tell. In the meantime, I'm going to go make myself some cinnamon tea and a hot water bottle. These menstrual cramps are no joke whatsoever.

Saturday, March 1, 2014

Two years strong

Today marks my 2 year kidneyversary! The days, weeks, months, and years leading up to my transplant were difficult.  There were a lot of setbacks, and at times I really didn't even think it would happen. At times I wondered if it was even "meant to be". But then, when my brother and I actually received a transplant date, everything became "real" again.  But the date was more than a month away. I was still afraid that something would happen beforehand which would cause the surgery to be cancelled...or perhaps an emergency would come up and my surgery would need to be cancelled.

Sure enough, about 3 weeks or so before the scheduled date of my transplant...I caught a cold and my sinuses went crazy.  Perhaps not the best thing to do, but I was afraid to go to the doctor to get it checked out because I didn't want my surgery to be cancelled.  So, I went on a mission to heal myself. Neti Pot, over the counter cold medicine, pain medicine, lemon+honey+hot water...you name it, I had it. Miraculously, I got over my symptoms about a week before my scheduled surgery. *whew*!

I'm glad, as I was counting down the days before I'd no longer need to insert large needles into my arm. Counting down the days before I wouldn't have to "plan ahead" before going to the washroom in the middle of the night. That was one of my least favourite parts-having to stop my machine, disconnect myself, flush my lines, and recirculate my machine because I had to go to the washroom...and my machine would beep every 15-30 seconds while recirculating. Disconnecting didn't take TOO long, but anything more than getting up and heading straight to the wash room is a LONG time when you REALLY. NEED. TO. GO.

But alas, I've managed, thank God, to make it through 2 years with little to no issues related directly to my kidney. I am so thankful to my brother for giving me this amazing gift.

Here's to many, many more kidneyversaries.

Friday, February 28, 2014

Operation: Prednisone Taper

When I saw my transplant nephrologist on Monday, he agreed that now was the right time to begin operation prednisone taper (and ultimately discontinue).

I've been on prednisone in varying amounts since I was first diagnosed in '96. I have prednisone to thank for many of my health issues past and present, including cataracts, stretch marks, moon face, and, of course, the avascular necrosis which resulted in the need to have both my hip and my knee replaced.

In the past, doctors have tried to taper me off of prednisone. The problem is the fact that my lupus would flare something terrible whenever I got any lower than the 7.5 mg daily dose. I've been on 5 mg for several years, with the exception of a temporary increase in the dose shortly after my transplant. The other problem is that my doctors were just trying to taper the drug off completely and not replace it with something that perhaps wasn't chock full of horrid side effects.

In comes Imuran
Imuran!
This is what I will be taking in order to replace prednisone. But in the meantime, we are still erring on the side of caution and tapering my prednisone dose slowly while including frequent blood work.


I'll essentially be taking half of an imuran pill everyday.

Half of an imuran pill = 25mg

Easily broken in half 
I will be pairing my imuran with half of a prednisone pill. (2.5mg) I'll be doing this on Tuesdays, Thursdays, Saturdays and Sundays.
25 mg of imuran and 2.5 mg of prednisone


On Mondays, Wednesdays, and Fridays, I will take my usual 5mg of prednisone coupled with the 25mg of imuran. This will go on for one month.  After one month, what I'll be doing is eliminating the prednisone altogether and bumping the imuran up to an entire pill every day. My doc will be keeping a very close eye on my bloodwork to ensure there isn't anything funny happening.

So for now, this is what my morning medications look like:
On Mon, Wed and Fri, it is a full (5mg) prednisone pill


  1. Advagraf- immunosuppressant 
  2. Imuran - immunosuppressant
  3. Pantoloc- helps with my reflux
  4. Prednisone- the drug I love to hate
  5. Palafer- Operation: wake up, hemoglobin
  6. Vitamin D- well..I have low vitamin D.
It's nice to finally be taking steps in the right direction to rid me of this prednisone. I just sincerely hope that my body responds well and doesn't go crazy after the prednisone is gone, especially since I've been taking it for so long. I'll update as usual, including any changes to my bloodwork. Hopefully there won't be anything negative to report.

Wish me luck..!


Thursday, February 27, 2014

Looking forward to

Looking forward to the day when I can look back on all of this and laugh; the day that all of this is but a distant memory. 

But for now, while it all seems "fresh"...

This sucks. 
This sucks, bro. 

Thursday, February 20, 2014

It's my healing & I'll nap if I want to!-PART 2!

Ok, I stand by my statement. Healing after surgery like knee replacement can certainly cause extreme fatigue. However, based on my history and for "just in case" purposes, I got blood work done a few days ago.

Lo and behold-my hemoglobin was 86 (8.6 for my American friends). Looks like my body didn't quite bounce back after the blood loss suffered during my knee replacement. So what's next? Well my transplant coordinator wants to  know if my iron stores are high or low, and that will dictate the course of action. It's either gonna be IV iron, or aranesp (EPO).

I'll keep you posted.  *sigh*...I'm soooo full of fun/surprises.  Never a dull moment..

Monday, February 17, 2014

It's my healing & I'll nap if I want to!

In the days following my knee replacement, I've had trouble sleeping. This was mostly due to pain as well as simply being unable to get comfortable. I'm a side sleeper or a stomach sleeper. After surgery, my available sleeping positions were, of course, pretty limited.

Now that almost a month has passed since surgery as well as some intense Physio, I'm more flexible and able to move around in bed a bit more. Also, the sheer amount of pain that I've been in has subsided a bit and is responding better to my pain medication. 

So? What does this mean? It means the the amount of sleep I've been getting as well as the quality of sleep I've been getting has increased exponentionally. I still wake up in the middle of the night a few times. Maybe 2 or 3 times. But still, even with that being the case, I'm sleeping much better. And, if undisturbed, I'll probably sleep comfortably until 9:30am. 

What has changed is my energy level by midday. I am doneeee.  Exhausted. Finished. Finito. 

This worried me a bit. I have an appointment with my Nephro next Monday, so I've scheduled some bloodwork for myself tomorrow so that the results are in by the time I go to that appointment. After my surgery, my hemoglobin dropped from its usual range of about 120 down to 79 (for my American friends, that's 12.0 to 7.9). This was to be expected. After all, I just had major surgery and some blood loss is inevidible. My hemoglobin began to creep back up as the days passed while I was in the hospital so obviously that is a good thing. 

So? Why am I so tired a few weeks after my knee replacement? Assuming my bloodwork tomorrow is all normal, I can only attribute this to one thing: HEALING! For crying out loud, major surgery means major healing. Our amazing bodies put so much energy and effort into healing out bodies when it senses trauma or illness. Perhaps the side effect for this natural process of healing I'm experiencing is fatigue. 

 Now, I won't lie. I jumped onto google yesterday to look up "tired after knee replacement surgery" and the above answer popped up. I don't know why I didn't think of that on my own, but it makes total and complete sense. 

So, if you too jumped on google and searched for what I searched for, or something fancier like "fatigue after total knee arthroplasty", and you've been checked out and are fine from a medical standpoint- here's my advice to you. SLEEP. NAP. REST. And, lastly- DON'T WORRY-this is NORMAL! 

Xo 


Disclaimer: while I wish it was, this gorgeous baby is not me-I found her on google LOL. 

Saturday, February 15, 2014

Progress Progress Progress

It has been 24 days since my knee replacement surgery and I must admit-things aren't looking quite as dire as I thought they did this time a week or a week and a half ago.

While I do still have pain, I don't feel it necessary to heavily medicate myself and maintain a medication/pain killer schedule any more like I did previously. I very rarely use the oxycodone any  more (I haven't used it for about 3-4 days) and I only need the morphine 3 times a day, especially when I'm doing my exercises.

I previously dreaded going to physio, as I knew I was in for some major pain and tears. Now, I do still expect pain, but I'm actually beginning to see major progress. When I went to my first physio session, the physiotherapist told me that generally, 3 months after knee replacement, the surgeon wants the patient to be able to achieve a range of motion of at least 90 degrees. I cannot recall the exact number on that first day, but I'm sure it was less than 80. Man, I definitely have some work to do.

In continuing with my one on one therapist, Alma, plenty of progress has been made. During my next physio session, I'm going to try and get Alma to take pictures of me doing my different exercises so I can post them up. After a few sessions with Alma, I had already met the 90 degree angle requirement only within a couple of weeks. After each physio session, Alma would re-measure my range of motion. Most recently, I went from (I think) 112 degrees to 126 degrees. Amazing. I simply cannot wait to be able to get back into the gym and do things I wasn't able to do before due to discomfort.

Here is what my knee is looking like nowadays. I think I need to wear mittens while I sleep like babies do, because apparently I scratch my knee like crazy while I'm asleep/half asleep.  Well, I'm actually scratching quite a bit, likely due to the morphine. But yeah, I trimmed my nails all the way down to help minimize "damage" to my scabs and scar. It's minimally effective ha.

The little "dots" on the sides of the long scar are the insertion points of the staples. Freaky lookin'!

Sunday, February 9, 2014

Stand up for yourself! Dell Debacle!

Seems like I'm always finding myself in some sort of debacle! Well, here's the recent one: my online purchase of a dell laptop.

I bought my laptop online on boxing day. My good ol' HP has seen better days. The keys are popping out, the screen flickers in black and white when I go to a website that is mostly black, and the sound doesn't work. Not fun if you're trying to watch something on youtube, netflix, etc.

Luckily, I get a discount from a few different computer companies through work-Dell, HP, Lenovo, Apple, etc. It was essentially a toss up between Dell and HP. The first laptop I ever bought for myself was a Dell, and the second was an HP. I don't recall having any major problems with my Dell, but the second time around, at the advice of a computer tech, I went with an HP. My HP was a beautiful, albeit heavy, 17.3 inch screen laptop. It was a beauty! Loved her. Had her for about 4 years and would have happily let technology pass me by and keep her for another 2-3 years if not for the problems that began to surface. At that point, it was more economical to just buy a new computer.

When I spoke to co-workers and such and told them that my ultimate purchase was going to be between Dell and HP, everyone seemed to sing Dell's praises. Having no recollection of any major problems with Dell in the past, I decided to go with them again.

With boxing day around the corner, I didn't really have enough time to gather up all of the money I wanted to gather in order to buy my computer at a discount on top of the discount I already get through work. I went online and looked at various computers before deciding on the computer that I'm currently typing on-a 15 inch touch screen inspiron.

I liked the online purchasing process. There is someone on the other end in a "chat" typed capacity that walks you through your purchase and assists you. Before I began the purchase, I asked the person helping me if I could buy the warranty later, since, again, I was short on funds, but the computer I was purchasing was at quite a good discount. The Dell rep said I had up to one year to make the purchase. This worked perfectly for me, since I planned to make a purchase in about a month or so. What I wanted was the warranty in case my computer stops working for whatever reason, as well as the warranty that covers accidental damage. An additional 2 or 3 years should do.

So I made the purchase on December 26 and received the computer about 2 weeks later. I transferred most of my files from my HP to the Dell and worked on getting acquainted with this crazy operating system called Windows 8.

As you know, shortly afterwards, I had my knee replaced and the last few weeks have been a bit rough for me. First I attempted to do it through Dell's chat mechanism. I was told I needed to call and was given a phone number. I called-I was transferred to someone else...who told me I had to do it through chat. In all, I spoke to 3 different chat agents and called 3 different numbers.

I finally got someone through chat who did say that I had to speak to someone directly, but offered to call me, then connect me to the person I had to speak to. She was very passionate about having me fill out the chat survey that pops up at the end of every chat where I discuss how helpful the chat rep was. She told me that she was going to put me on hold and it might  take a while, so perhaps I could use that time to fill out the survey. I told her I would do it AFTER I was satisfactorily transferred over to the appropriate person.

Eventually I was connected to someone in technical support. After chatting for a while, he specified to me that I could extend my warranty, but I could not get the accidental damage coverage. Why? I asked. I was told that THAT particular coverage needed to be purchased within 30 days of purchase of the computer. What? That's not what I was told. How many days has it been since I bought the computer?

33 days.

What?!

I of course protested, but to no avail. I would have spoken to a manager . then and there, but I had company coming to visit me and my knee (haha) so I opted to call back after my wonderful cousins left.

I called back (and again, got the run around for about 20 minutes) before I got another manager. Out of respect, I'll refer to him at "C". After discussing with him, he essentially told me that the rep that assisted me in buying the computer told me the right thing, and I didn't ask the right questions. The warranty is one thing-the accidental damage is different-it's considered a coverage, not a warranty. I expressed to him that me not being a Dell employee, I wasn't aware that different warranties (he corrected me-it's not a WARRANTY, it's a COVERAGE) have different names and different time frames in terms of when they should be purchased. On top of that, it's 33 days later for a purchase that should, as per Dell's apparent policies, should have been purchased within 30 days. It's not like I called 3-4 months later. C wouldn't budge. When he seemed to be dismissing me, like "well, is there any thing ELSE I could help you with" typed verbiage, I told him yes-I would like to escalate this further.

In asking to have it escalated further, he reiterated to me that he would be happy to do that, but the person I spoke to would simply tell me the exact same thing that he has already told me, and if  I wanted to hear the exact same thing, he would be happy to arrange it. Well arrange it then-you're not going to deter me from speaking to someone else. He was also sure to let me know that he would fully note/document my account with the conversation we had and all that he had told me-again, trying to deter me, or perhaps thinking I would escalate it and change my story. Listen-just escalate it. He told me that someone would contact me the following business day.

The following business day, an escalations rep named Deb called me. He reiterated what C told me, but after hearing what I had told him, understood my point. He offered to contact the warranty department and ask them to give me both of the warranties/coverages that I wanted, especially based on the circumstance. Since the system that enters the warranty only allows for this particular warranty to be added to a system up to 30 days after purchase, he could not promise me that system functionality would allow this addition to take place, but he would contact the appropriate department and would try.

The next day, he contacted me again and said he was going to forward the information. In the meantime, he requested various pictures of my laptop just to ensure that it was still in good condition. I don't put it past people to try and purchase this warranty after the computer has already been damaged. I took the appropriate photos and sent them off. He said someone from the warranty department would call me the following day.

The following day, the warranty department contacted me and I was able to successfully add both warranty/coverages to my computer. The process was seamless, though it did appear that some things needed to be done manually, perhaps because it was past the 30 days. Other than that, everything went through just fine.

The day after that, Deb called me back again as he wanted to ensure everything went smoothly, and if it was ok for him to close the case. I thanked him for his diligence, and that it was in fact ok to close my case.

So in the end, I stood my ground and was able to get was I was entitled to. I wasn't given total and complete information and should not have been penalized for that. C didn't see that, but Deb did, and I'm happy about how everything worked out, even though I had to call/chat with over 20 people before getting what I needed.  In the end, it all worked out.

And that is my Dell Debacle.

 
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