Sunday, June 1, 2014

Sick girl for hire.

I got this lovely letter from social security yesterday. According to the government, you only need arms and legs to work, so I am fit for duty!
I knew when I walked into that chiropractors office for my social security "internist" appointment, and all he had me do was move my arms and legs, that I was in trouble. However, I was even more worried when he didn't seem to understand most of what I was saying, and after I listed off all of the side effects of my treatment, his eyes only seemed to flicker in recognition at the word "tired" at which point he pulled my eyelid down and declared, "You! anemic!"  Duh, I only mentioned I give myself procrit injections... Or did he miss that?
Of course it didn't help that I got Ms. Moore for my social worker. I knew right away with her too... It doesn't take a genius these technological days to find an address for a large hospital like Keck of USC, but apparently, my social worker does not use computers-- or phones. She sends letters (postmarked 7 days after her dated letter, stating I only have 10 days to return the information she requested.) asking for USC's address. Thank God I knew the answer, and her phone number.. And that was the least of my problems with her. There is someone who got into social work to really help people, right there.
So, apparently I'm ready to get back out into the work force. A few little things I should probably mention first. I can't really commute because I do tend to get sick, especially in the morning. (It's a little bit of a distraction while driving with my hands at 10 and 2, but my head in a bag.) Also, I can't move around too much or lift, on account of the fact that I am chronically anemic and also have gastroparesis, so I don't absorb nutrients which also makes me weak and quite dizzy. Speaking of the gastroparesis, eating is a tricky thing for me. Most days I am in the bathroom a lot, please don't mind the loud puking noises. (A bathroom is a requirement for me to work at your establishment) From time to time, you may have to come wake me from the bathroom floor, I tend to get especially weak after throwing up. Once I'm okay though, I will give my FULL 65%. However, I wouldn't recommend me working with money or numbers, on account of the "Brain fog."  I also can't do repetitive movements for long periods of time on account of the Rheumatoid arthritis that has been worsened by my treatment. My wrists and fingers swell and lock up pretty quickly now on the computer... I can give you a good 4 to 5 hours, tops of anything else though. (in between the vomiting, stretches, rest, and sometimes a stupor or two) Of course, after my work day, I will need someone to pick up my son, cook dinner, clean up a little, and maybe carry me to bed, because no matter what I do, any excursion will cause flu like symptoms for me into the next day. Guaranteed. I'm sure walking into your office and seeing my enthused and energetic face every morning (I make it in) will get you motivated for the day. Yes, for the last 5 or so years I would have made an awesome employee dancing to "Mr. Roboto" (in short intervals) or as an employee at the social security office. Hehehe. Maybe I shouldn't mention these things? Either way, if you think I sound like a perfect fit for your team, you know where to find me, either in the bathroom, or if in a 65% feeling moment, trying to compensate as a mother and wife.
I'm just kidding, guys... I'm not as upset as I sound, anymore... today. I am always quick to remember and beat myself up, because at least I have my arms and legs. :)

Monday, May 19, 2014

Surviving vs Living

A lot has happened in the last few months. Not only did I start the Abbvie clinical trial, but I am 2 months down, and I am testing as Hepatitis C FREE! I am still amazed every time I say it.

That was the biggest news, but secondly, we had the Donate Life Run/Walk on April 26th, and I smashed my goal of 25 team members! 35 Team Albertonians this year!! Hehe. It is always an amazing day, but seeing how many people came out to support us this year, was definitely the icing on the cake. Thank you to everyone who was there and/or who donated to the cause. I still have T-shirts and little gifts to send out to some people. I also have personal items that I was so careful to watch for my team members, and then forgot to give them back before I went home. :)

Normally, I am a lot more sociable, but these last few months I haven't even really updated anyone on my health. Maybe antisocial is a side effect? The side effects are not as bad as the interferon treatment though. I don't throw up every day, and I'm not losing clumps of hair, but I do have a quite a few of the same issues. The most serious physical side effects for me now are the gastroparesis and anemia. Every time my liver starts to fail, my stomach does too. The doctors are hoping though, that this time it is just because of the treatment and that once I am done with it, my stomach will start to function again (or better at least).
The anemia was an easy fix, in theory. I have now started taking Epogen shots 3 times a week to raise the red blood cells. Though, that has it's own lovely side effects, mostly sore bones and anxiety. Getting the prescription was the main problem. My doctor had started to lower the dose of one of the trial medicines, Ribavirin (it is what attacks the red blood cells) but I was becoming more anemic; shortness of breath, fatigue, heart palpitations, dizziness... and we couldn't afford the co-pay of the Epogen, so my doctor stopped the Ribavirin completely until I could get it. We tried a few things, but honestly I couldn't ask Jason to max out his credit card just to pay for part of the first month. I was also scared that stopping one of the three meds would cause the Hep C to start coming back or mutate... That's when I said forget it, I've done all that I can do. I'm done worrying about it. If I need the medicine, God will just have to take this one. A few days later, a dear friend put the entire co-pay in our bank account. All of it. If you know me, then you know I have problems with asking for anything, but with my friend, she did not ask if I needed or wanted help, she just did it. Forced me really. Hehe. The world is filled with Angels, and I've got quite a few with me. Every time I begin to get discouraged, something happens that lifts my spirits. I think that ever since that day, the way I am looking at my situation has started to change.
Lately it has been a little hard to stay positive. Everyone tells me just to remember that it is just the medicine that is making me sick, and trust me, I know this. Obviously I can handle physical pain, throwing up daily for years, being connected to tubes and bags, I can even keep up with a home (somewhat) during it all. But, everything I do is a push, and nothing in the world is slowing down just because I can't keep up. Most of my life has been sprinkled with pain and sickness, and in the end I always knew I was going to live a shorter life and most likely die a painful death in the hospital. Sometimes I would wonder how much suffering I was willing to go through just to maybe have a few healthy years before it ends like that anyway. My answer was always that I would go through whatever it took to survive.
When I went in for my clinic appointment on Friday, I was hoping for numbers to be off. Something that they could just regulate with a pill or something. Instead, my doctor recommended more rest, someone to help me with my errands, and to see a therapist (because I have been through a lot. seriously.) He also told me that if the side effects are getting too tough, we can stop. There is a possibility that if I complete just 3 months of the treatment, the Hepatitis C will not come back. There are also some new treatments that will be coming out within the next year or two that may not even have this many side effects, and with my numbers the way they are, I should have time. When he said it though, I nearly laughed. Why would I stop now that I am so close? After, I started thinking of all of these years I have wasted, just trying to survive for extra years that I am not guaranteed. What if I did stop this treatment at 3 months and the Hep C doesn't come back, or what if it does, and instead of filling my body with more drugs, more invasive procedures, more time in a hospital bed, I just live as happy and healthy I can, enjoying what I have already been given. Everything that I have gone through has changed and scarred everyone around me. And while I know what is in my heart, and the person I could be, no one else has been able to see that person for a long time. I have no guarantees, if I continue treatment, if I don't... and after 8 years of surviving, I am ready to put my health into Gods hands, and only worry about showing my son how to truly live with whatever situation you are given. My only fear is that he will see this as giving up. I'm not sure if anyone who hasn't been through a similar situation would see it as anything else. It's a big decision, and my next appointment isn't for a few weeks, so who knows how I'll feel by then. In the meantime my framily, just remember that I love you all, and even if I don't pick up the phone, I think about you often.


Sunday, March 9, 2014

48 DAYS LEFT...

...and we've got some stuff planned for you! Since my treatment didn't start Friday as planned, my sister, River, and I got together and thought of some ways to spread the word even more this April. Friday, April 11th is National Blue and Green day (it is, I didn't make it up) and we want you to dress in your most spirited outfit on that day, snap a picture, and post it to your social media pages with the hashtag #TeamAlbertoni. We will choose the three most creative/outrageous outfits on April 12th for some possibly awesome prizes. As if we needed the excuse, we got dressed up to give you an example.

Now, if you don't have enough blue and green, we can help you out there. Sign up with Team Albertoni for the Donate Life Run/Walk or donate a few dollars to the cause, and you can win some of the above "swag." We've got wigs, sunglasses, fingerless gloves, and wrist bands, so that you too can support the cause... Or wear it to your pub crawl on St. Paddy's Day. Hehe
Sign up ***here***



Friday, March 7, 2014

Abbvie trial start date

I'll just consider today a dry run... A few sleepless nights in anticipation and a drive to USC today, to find out that the new medicine won't be delivered until Tuesday. Well, I've waited 33 years, what's 5 more days? I did get to find out all of the side effects and stuff, so now I can just think about those possibilities until Wednesday. Just kidding, I'll enjoy my weekend, especially since it sounds like I may be a little sick for the next six months. I'm not complaining though, because I know that my doctor and nurse did a lot to get me on this clinical trial. Once I signed the Compassionate Use consent form I realized just how big of a deal it is for the FDA and Abbvie to give special access of the meds to USC for me. BIG DEAL. So no complaining for me... Just listing. :)
As for the side effects, besides fatigue, headaches, and nausea, there are a few that worry me a little. The first is that it interacts with prograf, which is my anti-rejection med. Instead of taking two daily, I will now be taking one prograf, once a week. If my prograf levels drop too low, I can go into rejection, but if they're too high, it has it's own set of consequences. The second is that it can raise bilirubin levels. (Remember "itchie Ricki" and "Banana mama"?) No fun! Of course those are just known side effects. There have only been about 1,000 people who have been on this treatment regimen so far, so who knows what kind of side effects a weird one like me is going to have. Positive thoughts... Im not really stressing about the side effects. My main concern is just that it works... And that I don't have some crazy allergic reaction to any of the meds. Positive thoughts... I do, I really feel like this is going to work.

By the way, you bunch of procrastinators... Have you signed up for Team Albertoni YET???