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 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 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

Wednesday, November 21, 2012


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..!
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