6 months. Wow! I really can’t believe it. As everyone told me it would be, this recovery is a ROLLERCOASTER! One I would gladly ride again, but thankfully don’t have to. Please remember that I write the truth of my recovery. The down moments are just that. Down moments of a procedure I support whole heartily and count as one of my life’s biggest blessings. The first year of your recovery, you are HSCT’s Bi$@&. I forget to remember this on a daily basis. When it is good….. BOY IS IT GOOD! But when I’m stupid….. You get me.
Let’s see, where were we since I last wrote… Stopped my antivirals because of 2 months in gastrointestinal hell. Spent the next couple of weeks…So happy, feeling alive, whose sick? Not me ******BAM****** SHINGLES! Then bed followed by more bed, followed by oatmeal bath, followed by… You get it. 2 ER visits and a bit of morphine later, I am now waiting for an MRI of my lower lumbar to see if it is something, non shingle related that is causing the new crippling back pain, that has thankfully eased up a bit. The funny thing is, I know what is my fault and what isn’t. I know that throwing a communion party 1 month after I get out of the hospital is going to result in an illness STREP TROAT. I know stopping the antivirals to escape the hell I have been caught would probably result in (and did) SHINGLES. But I struggle with when it comes to picking the best of two really sucky options.
Option 1 – Stay on the Valtrex and relive the worst stomach virus I have ever had on a daily basis for the next 6 months.
Option 2. – Stop the Valtrax and risk getting shingles (hoping they avoid the eye and face area) yet again and possibly again) over the next 6 months and turn into a morphine needing pitiful example of myself.
What do I do? There are no other mediation they can give me and I am the rare person who reacts like this to these drugs!!! What I do know is that I have to (and want to) work, be a mom and have fun again. Really, I want to be reliable. This current predicament does not help that at all. I’m always sick at home because I give it my all in the office (I know no other way, never have). To be honest, I deliberately skip pills to be able to go in at all. Then the stress and speed at which I work leaves me barely able to get my daughter to bed. More often then not, I’m in pain when I do get home from overdoing it. Knowing me, I chose to go back to work at 3 months remotely and at 5 months I was released to go in the office. I think for normal HSCT, and the stressful job I have, that is pushing it. But then, throw my bitter battle with Valtrax into the mix and I can barely be me… Much less work or take care of my child. Thank God for Grandparents and friends to help when I can’t.
I’m thinking of seeing what a gastro doctor has to say, but I’m really not too hopeful. I could really use an option 3 or 4 if any one has it. I feel that I have an obligation to all of those looking at HSCT to show them a normal recovery. This is not normal and is quite honestly… Starting to piss me off a bit. But, it’s my normal, so there you have it!
I was lucky enough to to have my first ACL trip (Austin City Limits-big music festival) with some friends and my brother in law Dan. Because of the shingle pain, we rented an electric scooter and I cursed my MS past self for never getting one before. Sure, it was a bit odd to be at the weird festival in a 4 wheel Phoenix scooter, but hey…. Whatever. It was also super fun!We all had a really good time. That is untill I
1: had a bad encounter with a urinal I didn’t see in the handicap port-a-potty. Thus being left with a disease filled middle finger I show to anyone who asks… Or doesn’t.
2: I woke up on Sunday AM to a new battle of Valtrax war. Since then…. I am trying to get over that so I can work and I’m stuck in the loop of options 1 and 2.
Not my best couple of weeks really. But, as I mentioned, there were good times too..
I couldn’t resist. *yes, I am currently using all first aid supplies available to prevent an infection. Also, where ever I took Thst picture, they need to clean up!
PS. I’m exhausted at night and can’t sleep. This causes me to try and sleep in. Ambien, Ativan, and clonzapam don’t do the trick. I think it’s my body’s way of slapping me!