I’m kinda down and out right now.
When I first started this blog, I never imagined it would turn into something that would help so many others or that so many people would identify with. I just wanted to create a medium where I could express my thoughts and experiences about lupus and the things that come along with it. When I came up with the title of my blog…it just couldn’t have been more perfect. My blog became less of a “lupus” blog and more of a blog geared towards the actual title of my blog-the LIFE of a 20, now 30 something with lupus.
I’ve been a bit out of sorts for the last few weeks. There have been a number of things going on and happening around me, and it has taken a lot out of me emotionally.
I already mentioned last week that I was upset about what had happened with regards to my appointment with the plastic surg clinic. It just seems so easy to me-fix the mistake that you have made. But apparently it simply isn’t that simple. Either by some miracle, OHIP decides to cover my surgery, I have to come up with the thousands of dollars that the surgery will cost, or I just have to live with the permanent mistake made by someone else.
Secondly, I’ve finished school, I wrote the HR exam, and I’m ready to move on to bigger and better things. It has been exceedingly difficult to do so. I’ve been applying like crazy to the few suitable jobs that I’ve seen, but have only gotten one interview so far. It’s difficult when I know that for each job I apply for, there are literally over a hundred other people who have applied for the same position and have much more experience than I do. Many of the jobs that I’ve seen require all kinds of experience, even for what appears to be an entry level position. I can’t even manage to get one of these positions so that I can get the appropriate experience…because I don’t have that appropriate experience in the first place. It’s difficult for me because I worked so hard to get to where I am..juggling home hemo while going to school full time and working part time was no small feat I tell you. Pile studying for the nke on top of that..that was major. Let us not forget the days in between when I was either sick or had to sprinkle doctor’s appointments in between as well. But at the end, I did it. I finished. But..I’m still where I was before I started, working for a great company, but doing something that I really don’t want to do (anymore). It’s frustrating.
In previous posts, I had mentioned that I was seeing someone. Well, I’m no longer seeing him. I wish I could sit here and explain why, but I can’t, because I don’t know. We just kind of went from good to nothing at all.
Again, as I’ve mentioned before, I’ve been pretty candid about my past struggles. I’ve talked about my time at Sick Kids and the seizures I’ve had, the time that I lost my ability to walk/use my arms for a while, my numerous surgeries, etc. It most definitely has not been easy. In fact, it has been down right difficult. I’ve been upset over these situations. I’ve cried over them. So with all that I’ve experienced, all that I’ve seen, and all that I’ve felt, at the end of the day, it always seems like matters of the heart hurt me and affect me the most.
There isn’t much that I can say about him that’s bad. The time we spent together was great, and it made the last bit of my summer as well as the beginning of my fall amazingly happy and filled with fun and laughs.
Dealing with lupus and the things that came along with it where I am concerned has been much easier since having the transplant. Most days I feel great, and simply taking my medication once a day is much better than twice a day coupled with dialysis. Before the transplant, I simply wasn’t ready to bring anyone into my life. It was a lot for ME to deal with, never mind bringing someone brand new into it. But after the transplant, not only did I feel great, but I felt ready. But with the amount of time that had passed since my last involvement with someone..it almost felt/feels brand new to me. So when that first person who’s company you really enjoy comes along, who accepts you and all of your “stuff”..suddenly fades away, it hurts. So much.
I regret nothing, because the time we shared was absolutely amazing, and I felt a different kind of “happy” that I haven’t felt in a long time. I was experiencing an amazing high, and I never wanted to come down..and it stinks that I’ve had to.
All three of these things have weighed heavily on my mind. I know it’s not the end of the world. Things can and will change, progress will be made in some way, shape, or form. But as I blink away my tears while I type, and reflect upon everything I’ve said above, all I can think is that right here, right now…sucks.
My convocation was on Tuesday. As I got dressed and ready to leave, I wondered if it was the best idea to do a leg murdering workout before I planned to walk across a stage in front of hundreds of people! Haha, but it was okay.
My friend ‘She (pronounced Shay. For the purposes of this post, I’m going to spell her name “Shay”, so that “Shay” and the word she are not confused LOL.) was there with me for the most part. She and I had been in many classes together and became friends, both in and out of school. Shay along with another college friend Christine came to visit me while I was in the hospital just after my transplant, so we’re all close.
Attending Convocation was great for me. Not only did I graduate, but I graduated with honours. I mean, I know I’ve said this already, but it’s just so symbolic for me. 2012 is my year of change…positive change. I can’t wait to see what happens next.
Everything went pretty much as planned during Convocation. While everyone was asked to hold their applause while each student walked across the stage, as you might imagine, there is always going to be some rogue family members or friends of a grad who cannot contain themselves. It was so funny. I think the funniest one was when one student walked across the stage (I cannot remember his name, let’s just say it was Joe) and then all you hear is “YEAH JOE! GET THAT DIPLOMA!!!”. Oh my goodness-the whole audience erupted in laughter.
Anyhow, here are some pictures. Yay!
|Shay and I’s obligatory bathroom pic. It didn’t turn out as great as we hoped…|
|…so we took another one. I am holding the camera believe it or not 🙂|
|I’m a big fan of making silly faces in an otherwise serious situation|
|A nice one|
|We got our signals crossed. I thought we’re doing silly faces, she thought serious faces.|
|So we did this one, which is our serious or “pissed off” faces.|
|Mixed up again. I thought we were doing another nice one, she thought we were doing silly faces.|
|So now we’ve both managed to do silly faces.|
|I’m the meat in a “my two favourite boys” sandwich.|
|Family minus my brother. Someone had to take the pic!|
|Myself and Angie, my HR Program Coordinator as well as my saviour while I was taking online courses. My sister bought me those lovely flowers.
Yay for graduating with honours! 🙂
P.S.- Dear Lupus, please shut up. I not only graduated, but I graduated WITH honours in spite of YOU. Good day to you.
As I may have mentioned before, I am quite pleased at how things worked out in terms of my schooling. I’m glad that I managed to finish school prior to the transplant. To me, the transplant is like a new beginning…and I’m glad that I don’t have to look back and finish something that I had started prior to the transplant.
I’m happy to say that I’m feeling much better where that cold I had previously is concerned. I was kind of nervous as my first thought was…”Watch…they’re going to call me in, like, two days from now and tell me to come in ASAP as a spot opened up and they want to do the transplant ASAP…and I’ll have a cold and will be unable to be transplanted”. Now that I’m better, I’ll have to do my best to avoid getting ill again (as I would do in any other situation anyways!) 🙂 The neti pot really helped. It kept my nasal passages moisturized and it also washed away the extra stuff in my nose. I highly recommend it. It’s just a matter of making sure it is kept clean and that you use distilled water and not tap water.
But that said, I’d say I’m abotu 90% better, and will be 100% in the next day or two.
Hurray for feeling better!
As for feeling smarter, I officially got the email; I have completed all of my requirements to qualify for graduation! Yippie! Oh Lordy has it been a long road! Going to school/college with lupus definitely has not been easy…but I was determined to finish…and HELLO! I did! 😀 I can’t wait to go to convocation…hopefully I’ll be able to go and get my shiny new diploma with a shiny new kidney!! 🙂 Can I get an AMEN for that?? 😉
Hurray for feeling smarter!!
I have so many things/appointments going on this month!
I am first of all happy to announce that I wrote what I hope was my final exam before I graduate from college! Woo hoo! Now, I must say that the exam was quite difficult (microeconomics, or economics in general, simply isn’t my subject) so I hope I passed. I need to achieve at least 60% in the course. The exam is worth 50% of my mark and the assignments are also worth 50%. I did quite well on the 5 assignments, achieving 95%, 85%, 93%, 95% and 92%. So, I went into the exam with a 92%, or 46 out of 50. I actually haven’t “crunched” the numbers until right now. I suppose I would have really needed to mess up badly on that exam to at least not pass with a 60%. To be honest, until right now, I initially thought that the assignments were worth 40% and the exam worth 60%. I actually feel a lot better about the fact that the exam and the assignments are weighted equally.
(Assuming I pass, that is…hehe) Right now, I am just happy to be able to say that I have succeeded where this particular matter (college) is concerned. That is not to say that I may not eventually go back to school (university) to get my degree. I had an appointment with my nephrologist on Thursday and he actually encouraged me to do so. Blegh! I need a break from school!
Next, I have so many appointments this week. X-rays, ultrasounds, blood work, oncology, hematology, nephrology (two different ones)..so exhausting! But I still hope to find time to continue on with my vlog “mini-series). The next video is supposed to be about the time I lost my ability to walk/use my arms. That was a terrible time 😦
Hope to record that soon! I’m happy to have found some time (the last two days) to just lounge around and do nothing, even with all I have to do this month. I’m glad school was finished already (first week of Jan) so
I didn’t have to worry about that…!
I have a lot to be thankful for as the holiday season draws near.
The other day my transplant coordinator called me and let me know that the group of doctors (nephrologists) got together and finally discussed my case in regards to kidney transplant.
There was a lot for them to talk about and consider, including whether or not it was realistic and safe for me to go through with the transplant since this new smoldering myeloma diagnosis had thrown a wrench into my plans. The doctors required additional information from my oncologist. After much back and forth, they finally got all of the information they required in order to re-visit my case.
I’m happy to say that they have agreed and approved our plans to move forward with the kidney transplant. I’m really happy about that. There has always been SOMETHING that has blocked me from getting this transplant and I’m glad that we are moving in the right direction.
The next move will be for me to have an appointment with the transplant nephrologist as I have not seen him in a couple of years. Yup, I should have had a kidney a number of years ago if not for things continuously throwing these plans off track. Hopefully THIS time will be the right time. I may not get an appointment until January or so, but that’s ok…let’s just get this transplant done!
Another thing that I’m happy about is the fact that this one course that I am taking will soon be finished. I have one more assignment to turn in (which I will begin to work on after I finish this blog post), then I have my final exam in the first few days of January. After that, I’ll finally be finished school. All of the hours of studying for tests, exams, certification exams, doing assignments while juggling to maintain a proper home dialysis schedule…all of that will have finally paid off.
If it hadn’t been for this transplant stuff, I’d have started applying for HR jobs within the company that I work for already. My resume is on point…all I need to do is hit “submit!” But i know the second I do that..I’ll go through all sorts of interview processes and such…and within my first week of work is when the transplant will be scheduled!! I’m trying to do what I feel is the “right” thing and wait before I start applying for HR jobs..but there is also something in me that’s just like…”Live your life!” We’ll see. I feel like I’m getting close to transplant. If any delays should occur for ANY reason, I’m just going to apply for jobs. I thought I was going to receive a transplant years ago. Imagine if I put my life on hold all this time just waiting for it..?
I’m sitting here feeling unmotivated to do homework, so I thought I’d take a break and blog. I know that I have to work twice as hard to not just finish my courses on time, but to finish them EARLY. I am taking 4 online courses with two of them ending in August and the other two ending in October. Only 1 of the two courses ending next month have an exam. That final exam is actually the same week as my surgery. That said, I want to finish everything early and do that exam bright and early on Monday morning.
it feels weird not getting up and going to school since school started today. In actuality, I’ll be going online, most likely on Friday, to drop all but two of my courses. Transplant is eminent in the coming weeks, and taking a full course load would definitely be silly. I’m just going to take a couple of online courses and go from there.
I will keep my blog posted for transplant stuff…!
So I know I have been absent from my blog. I started school this month and am taking 6 courses..! Much more than I’ve ever taken at once. One course doesn’t have any tests except for 1 final exam at the end of the semester, and two other classes don’t have any exams at, just assignments. I can handle those.
I went to see the gastroenterologist earlier this month. Although it has been shown that there is some bleeding in my stomach, she is convinced (like everyone else) that it’s Lupus. Yeah, what ABOUT lupus? It’s so convenient (for doctors) when someone comes/walks into their clinic and has lupus.
Me: My arm’s itchy.
Them: Oh, it’s probably the Lupus.
Me: Man, I forgot my watch at home!
Them: it’s the lupus I bet.
Me: Can I get a big mac combo with a coke, lots of ice?
Them: Would you like Lupus with that?
Bah! I want answers, not just “well maybe it’s Lupus”! Anyhow, the gastroenterologist has told me that her secretary will give me a call to schedule a scope. From past experience, it has been determined that I have a twisty/bendy colon, which therefore results in mucho pain-o for me. So, she said she’s only going to do a partial scope, and give me lots of drugs. Hurrah Drugs!
I don’t know if I mentioned this on my blog before, but I went to the dermatologist because of a skin problem I’m having. On my face, I have tiny little white dots. They are not raised or bumpy. They are smooth against my face. So, I went to see the dermatologist. She didn’t seem to believe it was caused by my medication. She also checked my skin under a black light and determined that it was not vitaligo(sp?), so I’m pretty happy about that. What she DIDN’T know is…well…what it was. She called her one of her colleagues as well as a student doctor who was with her colleague to stare at my face. No dice. So, the dermatologist promised to research my “white spots” and call me back in about a week. I look forward to the phone call.
This wednesday, I’m going to repeat my cross match with my bro. Fun times! Stupid blood tranfusions screwing up my cross matchedness!
Other than that, I have spent most of my time over the past couple of weeks panicking about the NKE I’m writing in just a few weeks. I hope I pass. I’ve been studying a lot and would be crushed if I did not pass.
Anyhow, I will try to throw in an update here and there, but as you might imagine, I might be a bit too busy to report anything meaningful!