Thursday, May 26, 2011

Nephrology Appt

Today was my nephro appointment.

Prior to my appt, I went to the blood lab to do some blood work that I was supposed to do a couple of weeks ago of my up and coming oncology appt.

When I got to my appointment, I spoke to a fellow first before seeing my actual doctor. I contemplated emailing the home hemo secretary and telling her that I had no interest in speaking to a fellow today, but I decided to just chance it. Perhaps my doc would be the only one there...and if not, i'd simply say that I did not want to speak to a fellow. When I did get called in, I realized that the fellow I got was a doctor that I had spoken to before and actually liked.

We chatted about what was going on in my life health wise. I gave him a brief rundown about how I was supposed to have a transplant, and then the hemoglobin prevented it, prompting another visit to the hematologist, etc etc. I also told him about the pain that my avascular necrosis is causing me.

He asked me what I was doing to control the pain: I told him nothing really, which is true. While I do have the codeine and such sitting in my medication bucket, I rarely use them. In fact, I think I've probably used one maybe 2 times this year. I explained that I didn't want to become...one of "those" people who are prescribed and take codeine for a particular reason...then they get so used to the feeling of being without pain...that they become addicted to it or something. I personally don't think I'm the type of person who would abuse drugs or anything like that, but I also believe that many of the people who are prescribed medication for pain after a accident or what not don't believe that the are either. I'll admit that I have a pretty high tolerance for pain, but this particular pain is affecting my quality of life.

The fellow (his name is Simon) asked me if I had taken regular tylenol (ie. extra strength). I told him that I did, but it did not seem to help me too much. Simon suggested that I take 2 extra strength tylenols 4 times a day, and if I was in a particularly high amount of pain, I could take 1 codeine pill in a day. I agreed to his suggested regimen. We also discussed the appointment I had back in January with the orthographic doctor, and that doctor's suggestion that we hold off on surgery. Simon agreed with what I told him the doctor had said, however he said that at some point, it's a question of whether or not this pain is affecting someone's quality of life..and when I feel that is happening, it's time to demand the knee and/or hip replacement.

Simon brought up a note that was written in my chart about me possibly speaking to the home hemo social worker. The last time I was at my nephro/hemo appt, I told my nurse Rose that I would let her know when and if I wanted to speak to the social worker. I really didn't feel like it at that time. Simon asked me how I was feeling. I told him how I felt; I was so close to transplant (the closest I've ever been...this is the first time I had a specific date) and then my whole world came crashing down with this myeloma news. He told me that it might be worth talking to the social worker about it. Simon is very kind/great.

Simon left and came back with doc Richardson, my nephro. He gave Dr. Richardson the rundown of what we had discussed. Doc Rich brought up something very interesting that peaked my interest. He told Simon that he had another patient, with Lupus and renal failure, who had the same strange protein(s) in her blood that I had, and she had these proteins since 1994. She did go on to get a transplant which she had for a while. She is back in dialysis (I'm saying"is" as I am not sure if this lady is still around anymore). In her case, these abnormal proteins, as far as they were concerned, just seemed to be some strange manifestation of lupus...and did not seem to develop into anything further. Pretty interesting, huh?

When all was said and done, my rocaltrol (0.25 mcg daily) was reduced to 0.25 mcg 3 times a week. Hey, less medication is always good I think.

So now, it's the waiting game for my appointment with my oncologist again...and we'll go from there. It might be worth looking at this other lady/patient's blood work and see if there is any way it can be compared to mine. This gives me a little bit of hope.

Friday, May 20, 2011

What do our dreams mean?

Last night I had a dream that was kinda weird. Well, not weird in a bad way. I think we all have dreams whereby some stick in our minds while others are forgotten just as soon as we wake up.

In this dream, my parents went out and bought a new house, so we were all packing. What was strange was the fact that the rest of the family did not have the opportunity to view the new house before my parents purchased it, so the new house would be a surprise to us. My siblings were all packed and ready to move, whereas I procrastinated like crazy. On the day before we were to move, I was in a frenzy to get all of my stuff packed into boxes as time was quickly running out. I managed to get all of my stuff into boxes on time.

The next thing I remember, I was outside of our new house. The new house seemed to be in some sort of a new development, as I recall looking to my right and seeing a number of similar looking houses that were all pretty new.

When I opened the door and entered our new house, I was floored. This house wasn't a house...it was a mansion! The ceilings were higher than I've ever seen in any house. On my left was a staircase that wound all the way into the high ceiling. There must have been at least 25-30 stairs. The house looked as if it was professionally decorated. I felt like I had walked into a custom home build by the "Extreme Makeover" team in that everything was just so beautiful and well placed that I didn't even want to touch anything for fear that I might break or smudge something.

After that, I slowly and carefully made my way up the stairs. When I arrived at the top, there was a sizable hallway with numerous doors. I walked through the hallway, looking into each door as all the doors were open. I saw the room belonging to my parents. I kept walking and passed my sister's room. I kept walking even more and saw my brother's room. I knew that my room would come up soon. I kept walking and looked into the next room. Strangely, this room was occupied by a guy that I went to high school with. What's he doing here?? I kept walking. The next room had a girl I went to high school with. Huh?? Oh, well the next room maybe? No. This room was the bathroom. I kept walking to the final door. This had to be my room. No. Closet. So, I took my blankets and my pillows and slept on the couch.

The next thing I remember is asking my Mom how far away our house was from the main road. I don't drive, so if I go out, I'm taking the bus, getting a ride from a family member, or being picked up by someone. When I asked my Mom, she responded: "Oh, it's only 3 minutes away. Come, I'll show you".

She walked up the winding staircase. Where's she going? We were just standing beside the front door..?? She opened up a window and climbed out onto a large branch from a tree. There were many wide branches all clustered together. She looked back for me, so I followed. I looked down and was scared. The branches weren't particularly sturdy, and the floor underneath the branches seemed very far away. I had to extend both of my arms outward in order to maintain my balance.

"This way!" my Mom said casually. I carefully walked on the branches after my Mom. We soon got to the end of the branches, much to my relief. What I wasn't relieved to see was a large set of monkey bars after the trees. Well, they weren't exactly monkey bars. They were those rings that you can swing across on...like the ones that used to be on our playgrounds when we were young,...or the ones you might remember from American Gladiators. My mom began to swing across the rings with ease. "Let's go!" she said happily but casually. I followed her. My arms hurt as I wasn't used to using the rings. I don't think I've been on rings (or monkey bars, for that matter) since I was in grade 5.

Finally, at the end of the rings, was the main road. Wow. Is that what I'd have to do each time I wanted to get to the main road?

At this point, I woke up. Strange.

I know that I am a procrastinator. What happens to me sometimes is I procrastinate and I procrastinate...but in the end, I usually end up getting things done just as well, if not better, than others. Perhaps that's why I managed to get all of my stuff packed, even though I started just 1 day prior.

What about me not even being able to see the house before it was purchased? Could it be that we cannot always see or predict what is in our future, but we shouldn't always be afraid of what we don't know or what we don't see? The future may actually hold something positive?

What about me not having my own bedroom? I have to say that I sometimes feel very bound and tied down by dialysis. I don't get to go on any spur of the moment trips to Vegas or Cancun with my friends. Everyone else gets to do these things...and I don't. I'm left out...and am often feeling alone in that regard.

The main road? I've been through trials and tribulations in my life. Lupus, dialysis, joint issues, and now, smouldering myeloma. I've been overdosed on IV medication by a nurse. I've had a perforation in my colon and have had to wear a colostomy bag for 6 months. I've lost my ability to walk for a period of time. All of these trials and tribulations that I've been through have, in some cases, ended the journey of life for others who have gone through the same. And yet, I've managed to get through all of these difficult times, the "unsteady tree branches and the challenging rings". The branches required mental strength and balance, while the rings required physical strength, coordination, etc. I don't know what my "main road" will be. Maybe there will be a cure for Lupus in my life time. Maybe one day God will just be like..."Ok, that's enough", and I'll just be "better" all of a sudden.

I spoke to my Dad about my dream. We discussed the 'main road' analogy. After discussing this with him, it lead me to think more about the dream and come up with what the other aspects of the dream may have meant.

Dreams that are this vivid are not all THAT common for me. Let's see what tonight holds...

Thursday, May 19, 2011

Working and Lupus

I know I've discussed this before, but the topic came to my mind again. I do kind of feel "over tired" from being at home all day for these last few months. I think I'm ready to venture back to work and start interacting with people besides Maury Povich and Victor Newman. I'm hoping that this feeling of "tiredness" is simply the feeling of "over tired-ness" and not perhaps symptoms of something else.

I've been working at my current place of employment since 2003 and have worked in the same position for that period of time as well. After having gone to school for Human Resources (I have a few courses left that need to be fulfilled before I can graduate), I'm pretty eager to get a position within my company in HR.

If I do that, that will mean a few things for me. In all of my years of working for this company, I do not ever recall seeing a position posted in HR that was a part time position. I wonder if my body is ready (or even able) to work a full time position. I do, however, have hardly any problems sitting at my computer for hours at a time...but then again, I'm usually (almost always) on my bed and in a very relaxed position. I don't think most places of employment have workstations or desks as comfortable as my bed, nor do I think they allow time for naps. Hehe.

At the same time, I've managed to work part time (20 hrs per week) while taking 6 courses(1 course = 3 hrs of class)...and managed to be very successful in all of my classes. I don't imagine working full time being much different...except for the fact that I won't have any homework (well, except for the homework that I'll have for the classes that I am yet to finish...and that's it!)...and I'll have weekends off!

But, before we even get into all of that...there is a very important matter to be considered. Even though I already work for the organization that I want to do HR in, I would obviously still need to be interviewed for the position. I would imagine (and hope) for privacy reasons, if I did get an interview and the HR rep spoke to my manager for references purposes, my manager would not disclose any of my health issues that she has become privy to over the past few years to the other manager. But assuming my manager does not disclose any information, how does one deal with whether or not to disclose the details of their chronic illness to whoever is interviewing them for the new job?

Well, I know here (Canada), legally, a manager cannot ask you any questions pertaining to your health during the interview process. The person with the chronic illness has no obligation to volunteer such information either...unless, of course, a certain degree of health is required as a bona fide occupational requirement However, eventually, it might be necessary to disclose such info. For me, I wonder if it would be a good idea to disclose such information prior to a job offer...perhaps, say, at a second or third interview. I think it might be wise to at least inform your new employer when a job offer has been given and papers are now being signed. This doesn't mean that you have to get all specific with them and provide them with your medical history, but you should advise them of any particular accommodations you might need and how the employer can support you during your employment.

I'm still a little nervous about the whole issue. I just don't want anything (like my health) to upset my chances of getting a position that I really want/like, nor do I want anything (like my health) to interfere with my career, period.

I wonder how other people deal with chronic illnesses and job interview/new jobs..

Monday, May 16, 2011

..Oh yeah!

May 11 was my birthday. I turned 29. Gee wilikers, what am I going to do when I turn 30? The name of my blog will no longer be accurate! Any ideas for what I should call my blog when I turn 30? I suppose "The Life of a 30-Something with Lupus would be appropriate??

Haven't much to say!

I just wanted to do a quick entry stating that I haven't much to say in terms of progress.

I'm going to see my nephrologist next week, and I'm not seeing the oncologist until June 7th or so.

This is still just so weird to me. I know I've seen a lot of different doctors in my life...but I never imagined one of them would be an oncologist.
 
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