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$314.12

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A week or so ago, I got a message from my kidney transplant coordinator. She told me that my nephrologist had gone over my blood work and decided to drop the dose of one of my immunosuppressants. My dose at the time was 12mg a day and he wanted me to drop it to 10mg a day.

I thought ok, that’s cool. I currently take four 3mg pills of this medication. It’s called advagraf. I happen to have some 1mg pills left over from last year, so I’ll use one of those pills and three of the 3mg pills.  In the meantime, I responded to my transplant coordinator and asked that she call my pharmacy and leave a prescription for 10mg pills of advagraf for when I’ve run out of my current stock. I asked her to do 2 months per refill, as I usually ask for 3 months. There is a reason for this, which I will explain shortly.

For most of us, the start of the new year signifies a new beginning. Some people establish New Years’ resolutions. Others simply see it as a clean slate. Me, I get a small sense of dread. I feel this dread because I know the deductible period for my medical coverage through work starts again. That means that the first few prescriptions that I fill will cost me an arm and a leg.

As my current cache of advagraf began to dwindle, I know the time is near for me to fill this new prescription along with some other ones that are coming due as well. Not wanting to be paralyzed by sticker shock, I called my pharmacy to ask what the damage would be for just that one medication. $314.12. I cheerfully thanked the pharmacy tech that I spoke to. I didn’t want to let on that I felt like I was gonna throw up. I feel this same way every year at this time.

When I told my transplant nurse to only give me a 2 month supply, it was because I knew it would cost me a whole bunch of money at once if I filled 3 months worth of advagraf at one time.

This one prescription costs me much more than half of my biweekly payroll deposit, and I almost always get 3 or 4 other prescriptions at the same time-pretty much an entire pay cheque. I also get coverage from the government-all I have to do is submit my prescription receipts and they will reimburse me some money based on the amount of money I make. Pretty cool, huh?

 No.

I’ve learned to stop wasting my time by mailing those receipts. I send these receipts and wait from 3 weeks to a month for a response…not including the occasions where things went wrong and things got delayed. My receipts were never received, so I had to go back to the pharmacy and track down all these receipts again and resend them; they don’t want photocopies. Or, there is a certain code missing from the prescription, and without that code, they cannot assess my claim. Gotta go back and have my doctor write a note with the code, or write a new prescription.  I always get a response back telling me that I would be betting zero dollars back, as I haven’t yet reached or surpassed my deductible. On the few occasions where I’ve actually gotten a few bucks back…they send you a letter telling you how much you’ll get back…then they MAIL a cheque about a month later. How about saving some time and sending me the cheque with the first letter!?

Hard core digressing.

I work part time right now. I’m looking for full time work in my field…but at the same time, I’m kinda scared. I’m scared that I won’t be able to work full time. I’m scared that the stress of 40 hour work weeks will be too much. But I cannot stay in my current job either, as I actually really dislike what I’m doing. I’ve been doing this going on 13 years now…and I’m ready to move on. If I don’t work full time, I’ll never be able to move out from my parents’ house to a place with my boyfriend. But, if I do work full time…am I setting myself up for failure? If I do move out and work full time…sure, I’ll be making more money, but my other expenses will increase exponentially as well.

I don’t know…I guess all I can do is try. The role I’m in makes me feel tired, drained, and unmotivated. Maybe if I’m doing something where I feel challenged…challenged in the right way…i won’t feel so tired, drained, and unmotivated. Maybe a change of scenery would be good for me.

I’m currently making what I feel are the appropriate moves to help me go in the direction that I’m looking to go. I’m not the first one with a medical condition to work full time…all I can do is try.  Only time will tell.

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  1. Starsinocean March 6, 2016

    I’ve been suffering from an undiagnosed illness since I was 19 and for the past 12 years. I have been fighting against it to help find an answer and a way to cope with being sick. I completely understand your being scared to transition to another job and a full time job. I had previously worked part time for five years in order to be able to have the rest I needed. The work environment at that job forced me to seek employment elsewhere. I searched for part time jobs, but didn’t find anything. So, I started looking for full time positions. I had your exact worries about transitioning to being full time. When I accepted my current job, I was terrified, because of all the “what ifs”. Having a chronic illness, especially one where there is no guarantee of good health further down the road, creates a mentality where you always have to think of worst case scenario, so you can prepare for it and adjust and make sure that you’ll be okay and not blind sided by something unexpected.

    There will be no right answer or guarantees for you, but I’m a firm believer in following that part of you that is “ready to move on”. You can’t change your physical health, but you can change your mental health. I also believe that mental health is what has carried me through being sick. Physically and mentally I’ve been through some major battles, while I haven’t gained major strides in my physical health, my mental health has become something I’m extremely proud of. All I can say is if you can make a step towards bettering your mental health, you run towards it.

    A little over a year ago I accepted a full time job. I worried about that decision, but told my mom, “Even if I can only last a year, I will have been able to say that I was able to do it and will have definitely learned what I can and cannot do”. And, I have learned my limitations. Unfortunately the job has been too much. But, even though I feel a tad defeated, because I can’t handle the daily grind, I have walked away with some serious life lessons that have helped me feel free. I’d assume we have the same worries: can I work the rest of my life, what if I can’t, how will I get by, who will I have to depend on to be able to get by, my parents won’t be around to help forever, who will be responsible for my well being, why does someone have to be responsible for me…I want to be able to be independent! I’ve always thought that I had accepted that my life wasn’t going to be what I had always planned and on a larger scale I really had. Then a situation came about where I just went “Oh well. I don’t care about exhausting myself trying to make this situation work out and its affect on my future. I’m not going to worry that this hasn’t worked out. I’m just not going to let it consume me”. And like that I freed myself. I finally realized that by accepting that I may not be able to take care of myself when I’m older and that someone may have to take care of me or any other worry about being chronically ill…I realized that by accepting this I was not sealing my fate to be those things. I was just simply acknowledging that they could happen and that I’ve prepared the best I can for them. But, I can still have a life. Letting go of the what ifs and the worry, if anything, has provided me more calm. I’m more relaxed when something about my health or future comes up. I know I’ve done all I can and what will be will be, but that won’t stop me from fighting to be the best person I can.

    If you can take the chance, without it negatively affecting your life should a full time job not work out, take the chance! Get out of your normal day to day routine, if only to say you did it. I stayed in a job for years, because it was a safe cocoon, but branching out has given my life a little more fullness. I got to test boundaries professionally and personally. I called it the year of me. I did what I wanted for myself, because I needed something more fulfilling.

    Thanks for reading! I wish you the best!

    Reply

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