Monday, July 16, 2012

Tea Cup Ride

I know, I know, I'm slacking again at the blogging thing! Since my last post, I've been struggling more with dizziness, shakiness, and extreme fatigue. It seems to pretty consistently follow my tapering of steroids - a day and a half or so after dropping, my pain gets worse, and I feel like I'm on the teacup ride, but I can't ever seem to get off it. This lasts for two days, then I have a day of re-equilibrating, then  it's time to taper again! Thankfully, I am 3 tapers away from being done with the Prednisone, at which point I will restart my long-term steroid regimen for my adrenal insufficiency. 

I am very excited to be off the Prednisone for more shallow reasons, as well. Upon seeing me for the first time in a few weeks, a friend asked me, "Do you want to be Alvin, Theodore or Simon?" Yes, the dreaded Pred-Head is in full-force, giving me chipmunk cheeks (and a double chin! Boo!). I also mentioned in my last post that my weight is at an all-time high. I feel uncomfortably fat, and would really like to be able to fit into my clothes again! With that being said, I am very thankful that I am no longer struggling to maintain a healthy weight (although if this continues, I may have to struggle to be a healthy [lower] weight!). I am enjoying food and eating like I haven't since before 2007! This is honestly an INCREDIBLE blessing!!!

Last Thursday, I was feeling a bit "off." I was dumping quite a bit, and just not feeling well. On a whim, I took my blood pressure while standing up. I was rather, um, surprised at the numbers that popped up. It was very low, and my pulse was very high. It improved when sitting or lying down, but was still not so good. I began an epic quest to find IV fluids. First, I paged Endo Doc, as I am supposed to do in times like this, as she has the ability to set me up for fluids in her office. She responded a while later. Unfortunately, she wasn't on site that day, and the infusion center on her floor recently moved to a different floor in her office building, so she said, "It would take a miracle for me to be able to set you up for IV fluids today. You need to find somewhere else to go." So, she suggested calling Urgent Care centers or heading to the ER. 

This is what would have to happen to get me to the ER
By this point, I was getting rather "fuzzy" in the head - so dizzy that my mind quits processing anything, so my sweet mom started Googling and calling Urgent Care centers. Unfortunately, most of them do not offer IV fluids among their repertoire of services. Finally, she found one that advertised that they DO have IV fluids! Mom called the center to confirm this. The lady emphasized that if the doctor did not feel comfortable treating you, he would send you to the ER. I felt it was more than likely that the Urgent Care doctor would feel a little uncomfortable treating this was not a great option, as I would rather have walked over hot coals while having toothpicks forced under my nails than return to a hospital emergency room.

So, my mom called my PCP, who is amazing, and asked for help. Since she is so amazing, she quickly was able to get me set up for IV fluids at an infusion center not too far away. I packed up a bag, and was heading out the door when Endo Doc's nurse called. "Hello, Hannah, we are all ready for you here at the infusion room." Oh. Well, I guess a miracle happened, which is great! But I was about to leave for another infusion center... So I had to politely bow out of Endo Doc's nurse's offer. But it's a good day in my book when you have not one, but TWO facilities begging you to come to get juiced up at their joint!

I kicked back in a chair like this while getting juiced up!
The infusion center ended up being absolutely wonderful. The nurses were super amazing and nice, the facility had huge comfy recliners to sit in - no medical-ness about it! I got 2 liters, and felt sort of better (things quit spinning, at least while I was lying down), but the nurses (at the request of my amazing PCP) determined that I was still not hydrated enough. I was still losing a lot of fluids from my stomach. So... I ended up getting 3 liters, my tummy settled down, and my vitals were much-improved by then, thankfully. I shut the place down - it was 8:30 by the time I left! I had a fantastic experience there and can't speak highly enough of the staff! So if you ever need IV fluids, gimme a call and I'll give you directions to their place! ;)

I went home and went straight to bed. Unfortunately, by the morning, my pulse was 67 while laying down, and 139 when standing up... too bad those fluids didn't help for very long! :( Arg. Thankfully, by Saturday, I was doing better. I had similar reaction to the next taper a few days later - two days of dizziness, then I was okay again... so I am getting really excited to get off this Tea Cup Ride prednisone taper and back on a stable dose of hydrocortisone. 

Hannah ;)

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