The weekend I got my diagnosis I had a pity party...But of course it also happened to be a weekend we had out of town guests. I sure was a fun hostess. It didn't help that not only was I emotionally not well, but I had a recurrence of nausea and major dizzy spells. It was as though my body, which had now not had any alcohol since November, wanted me to experience the bed/standing/sitting/holding the wall spins again. It was not good. I even had to skip breakfast with my friends on Sunday morning because I couldn't stand up. So, Monday morning I decided no more pity party. The only thing in this whole crap situation I could control was my attitude, so I was going to be positive.
This positivity was going well until my Doc called with my biopsy results. Good news first: The tumor was benign. Excellent news so far. The Bad news? The damage to my liver between the December biopsy and the June biopsy was worse than expected. There was worsening necrosis of the hepatocytes so Dr. M decided we would need to be more aggressive. How you ask? Prednisone. UGH. A medicine that comes with side effects like, moon face (as in-your face is as big as a moon), increased appetite, bone density loss, sleeplessness, and increased acne. I used to have perfect skin...the kind random strangers would comment on. Since going off hormonal birth control pills my skin FREAKED out and now I have zits galore. Going from one extreme to another is very depressing and caused my self esteem to take a significant hit. Now I get told it could get worse, and I could get fat on top of it? Someone needs to explain to the liver that all of the news I'd gotten in the last week is enough to drive someone to drink...only I can't because I have a bum liver, and stupid immune system soldiers.
I started the prednisone the week of my husband's family reunion-My doctor almost didn't let me go to Tahoe for the week that I had planned, but said as long as I got blood work done while I was there and on the way home I was ok. When I got the results of the blood work we were all shocked at how well the Prednisone seemed to be working. Dr. M called me and told me I was what those in the biz called "steroid responsive." Neat. Neato. Now I've achieved everything I've ever wanted. Ok, in all seriousness this was good news to hear-It meant he was already willing to taper my dose by 10mg (I started on 40mg). He also said this may mean we could talk babies sooner than 2 years...Ah, music to my ears!
After 2 weeks on the 30mg dose and about 4 weeks on Prednisone in total, my numbers continued to go down so Dr. M called with more good news-We could go down to 25mg. This was right before we were leaving for my cousin's wedding on the East Coast-We would be gone for 10 days. He said I didn't need to get lab work while being out of State-just prior to leaving and then when we got back. In the 4 weeks on Prednisone the only side effect I'd noticed was trouble sleeping-I was exhausted, but not sleepy. I also wake up early and can't fall back to sleep. But, my appetite was a little worse than normal but wasn't out of control-I was eating more/worse than normal, but I wasn't working out since that was put on hold for a little bit too so I figured it was par for the course. Our 2nd night of vacation Dr. M called my cell-he had gotten my lab work that I had done just before leaving and my numbers went up slightly. He put me back up to the 30mg dose of Prednisone. I guess we can't win 'em all right? We had a great vacation back east, and I was feeling like the good news was coming soon.
My LFT's didn't comply...the post-vacation results went up too. He didn't want to increase my Prednisone again so instead he put me on the Azathioprine at the same time as the Prednisone, and also prescribed Fosamax for osteoporosis since the steroids will leech calcium from your bones. Nothing makes you feel quite like an old lady like taking a medicine that Sally Field is hawking on TV. You like Me! You REALLY like me! Ok, she's selling a different brand, but still. So now my daily schedule involves taking my thyroid medicine first thing in the a.m. and I can't eat or drink for an hour after that. Then I eat breakfast at work, and then I take my Prednisone. My doctor said I can take a multivitamin again so that's after the Prednisone, and then after dinner I take my Azathioprine because it can cause upset stomach. On Wednesdays I have to throw an extra wrench in my day because I have to take my thyroid medicine first thing, wait my hour, and then take the Fosamax-I can't eat or drink, or lie down for an hour after this medicine either so Wednesdays I'm usually starving midmorning, but since I have to drink tons of water with this medicine I'm also too busy peeing to think about hunger.
I'm finally feeling the appetite side effects from this combo of medicines. I'm hungry ALL.THE.TIME. It sucks. I've gained about 7lbs since June. Pair that with exhaustion from not sleeping, and just an overall feeling of lethargy and I don't want to workout so the weight isn't going anywhere-it's just getting worse. I know I could have more outword appearing side effects like the worsening skin and the moon face, but I still do not feel good about myself. It's downright depressing. I'm sure my husband is feeling the effects of the medicines too, because I'm generally down these days. I try really hard not to be, but at this point I don't think it's a concious choice. I think the medicines are causing it. I think the biggest culprit is the lack of sleep.
This is why I started this blog. I don't want to feel down all the time. I need people to see it isn't so bad-And truly it isn't. I don't look sick, I don't feel sick. I just have to deal with shitty side effects from the medicines that I need to save my life. I need to find my mojo to get back to working out-This will help me get back some of the energy that I'm missing, and may even help me sleep. I need to feel good about myself again...locate the mojo and this may all come together nicely. Now that this blog is almost caught up to real time I hope the posts you see soon include working out and weight loss updates!
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