Saturday, July 28, 2012

An Olympic Challenge

Yesterday marked a momentous occasion.

I'm not talking about the beginning of the XXX Olympiad.

I'm referring to the last day of my steroid taper.

I am DONE with steroids!*

Praise God for helping me through this time on steroids and during the very difficult tapering process. And many, many thanks to family and friends for helping me on the days when the tapering rendered me unable to care for myself, and for putting up with my moodiness when the steroids made me grouchy or emotional. Steroids and the subsequent tapering process are challenges of Olympic proportions, and I'm very blessed to have crossed the finish line... at least for this particular event!

This photo is of Wilma Rudolph, a US sprinter and gold medal winner and Olympic record holder. In 1960, she became was the first US woman to win 3 gold medals at one Olympic Games. She has always amazed me, because she spent most of her childhood in bed with various illnesses. Her left leg became crippled when she contracted polio. At age 6, she was fitted with metal braces so she could walk. And yet, somehow... she pushed through all of this, and began to not just walk, but run.... and run very, very fast. Her incredible story inspires me to never give up, no matter what obstacles are in the way.

*Of course, the caveat here is that doctors tell me I will never really be off steroids. Due to my adrenal insufficiency, I'll remain dependent on two different steroids, taken several times a day, for the rest of my life. These steroids, however, are taken at "physiologic" doses (just replacing what my body needs to function, but is no longer able to make), not "therapeutic" doses (doses in excess of what is needed to function, used to dramatically cut inflammation and lower the immune system). So I'm not really counting them. ;) And after thinking about Wilma's life... maybe I WON'T have to take the 'roids forever!

Hannah ;)

Tuesday, July 24, 2012

A Visit to the Joint Practitioners

I had my second appointment with the new Rheumy and her NP. They are so very thorough and work very well together. They are joint practitioners! Get it? Haha. The Joint Practitioner NP updated my info and examined every single joint again. They found that one knee, the opposite foot and toes and wrist were swollen and inflamed. Weird to me since both knees hurt equally, but only one is swollen. It was kind of a running joke that how no matter what my joints look like at home, they would always look perfect whenever I went to my Rheumatologist! This resulted in her never really believing me when I said I was flaring! So, in a weird way, I was "happy" that the Joint Practitioners (JPs) could see evidence of what I feel.
See how cute, Dad?
I've been on the increased dose of the immunosuppressant shots for the last month or so. As a result, my whole family is finding my hair in and on everything (including some on my head! Imagine that!). I inadvertently pull out handfuls of my hair when I'm washing it, and running fingers through my hair is now inadvisable unless you want to build a nest. I'm not going bald, by any means, but I am definitely losing hair. This happens whenever I go on immunosuppressant chemo meds - they kill rapidly dividing cells, like hair cells. Maybe, though, this is another reason why getting a kitten would be no big deal... we already have tons of hair everywhere from me shedding - how much more could one little kitty contribute? Dad? Mom? Puh-leeeeeease?

Just a spoonful will do!
I also mentioned to JP NP that every Sunday, I feel kind of awful and gross. I do my shot on Friday nights, so she said that that delayed of a reaction would be unusual, but we've all agreed that my body metabolizes things... differently, to say the least. ;) Apparently, it's called the "Methotrexate Blahs," consisting of just feeling "blah," body aches, mental confusion/emotional fragility, headache, etc. There is a remedy, however! Cough syrup! I thought that the JP NP was joking when she announced that... but she wasn't! Apparently dextromethorphan (the "DM" in cough syrup) works on the Central Nervous System in a way that combats the Meth side effects (unfortunately, not the hair loss, though...). I tried it out this weekend, but this weekend I felt absolutely rotten. There were a lot of other factors at play, so I don't know if the Meth or the DM were to blame.

I feel like my joints have gotten a lot better over the last two weeks - they feel a lot stronger, and I don't limp as much - I'm less stiff. That's good. The bad news is that I do still have that inflammation in my joints even while on Prednisone. So, JP Dr. discussed that I may need another medication in order to get the autoimmune inflammation in my body under control, a biologic medication, likely Cimzia. But first, I need to finish tapering off steroids in order to see what my joints are like without roids in my system. She also wanted to inject some of the more inflamed joints injected with a steroid shot. Since all my joints hurt, even ones that aren't visibly swollen, I was not sure how much it would help me, so I declined, but it's something to at least consider for the future.

Also... I told them about the weight gain (and the massive appetite!). Since I've been on steroids numerous times for much longer and at higher doses without gaining a pound (except in my face), we don't think they are to blame. Another candidate is one of my nerve pain medicines. I think we can categorically state that my pain is NOT nerve pain, as I've tried several of these meds, and not a one of them has changed my pain. Since it isn't helping, and it's known for causing the weight gain, the JPs agreed that I should begin the process of tapering off of it over the next couple weeks. Apparently the withdrawal can be quite vicious, and although I'm following a tapering plan, I am feeling very wiped out and kind of foggy - could be from the withdrawal, could be from the steroid tapering, could be from my Meth shot, could be POTS, could be just the autoimmune inflammation... who knows?
Major Motivation

The JP Doc emphasized that I need to be doing some kind of exercise every single day to try to "dig myself out of this hole" that I'm in because of surgery, an insanely long hospital stay, and my constant arthritis symptoms, pain, POTS symptoms, adrenal issues, etc. I have been trying, but will renew my efforts to be consistent every single day. I will make myself a sticker chart, and that shall serve as huge motivation for me. Maybe if I exercise every day for a month, I'll take myself out for ice cream. ;)

So far, I've done my exercises every day (it's been three days. Go me!).

Hannah ;)

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 ;)

Thursday, July 5, 2012

How are you feeling?

So... sometimes in my blogs, I give all the medical info, but I forget to really write about how I'm feeling these days...

I'm feeling much better than I was in the hospital.

I don't feel terrible anymore, thankfully (at least, most days I don't!)! But I still don't feel well. This is the longest it's ever taken me to "bounce back" from a hospital stay, I think. I am very tired. I am very weak. I limp around on arthritic joints that randomly give out. If I stand up (or on bad days, even if I sit up, or even if I'm lying in bed) for very long, my heart races, I sweat, and feel very lightheaded. My hands constantly tremble. I still have pain, albeit mostly a MUCH, much lower level of pain than I've been in for the past several months. I run daily fevers, which means I have daily chills/sweats/headaches/malaise. I sleep a lot. But OVERALL: I am much, much, much, much better!

Also, I can eat again, really, truly eat, and I LIKE to eat again. I LOVE to eat again! I think it's the steroids and one of my nerve pain meds, but I am crazy about food now! And I can eat without pain or nausea. I am eating more than I've eaten since before I was diagnosed with UC (and as a result, I'm weighing in at 34 lbs heavier than my lightest weight a year ago!). It's fantastic. Some of this also may be due to the fact that Dr. Saturday freed up all the adhesions that had grown in my pelvis around my intestines, which can make it difficult and painful for food to move through. If so, the pain will start to come back after a few months, but hey, I'm just enjoying this while it lasts! Food has been an enemy, a chore for so many long months. I've had to distract myself at mealtimes in order to choke down enough calories to keep me going, then fight the nausea for hours afterwards. No longer! Pass the salt, please!

I am extremely happy (when I'm not grouchy from the steroids) to be at home. I can't even express how wonderful it is to be NOT in the hospital. I think that going home was the single best thing possible for my health. I got labs done last week. I compared them to my labs drawn the day I was discharged from the hospital. They are dramatically improved, praise God! Still several areas of concern, but overall SOO much better!

I am having some difficulties with the steroid taper. I taper every 5 days. The first day and a half after tapering are usually pretty good, although I feel pretty fatigued, but 36 hours after I step down, I get hit with really bad pain. It lasts for a little less than two days, then starts to relent... then it's time to taper again! At least it's predictable. This cycle will continue to repeat itself until the end of the month. At that point, I'll switch back over to my long-term steroids. They may try to taper me to a slightly lower dosage on those (due to the cyst, my body started needing more steroids, so we had to up my dosage twice back in January), but we'll just have to see how my body responds.

I am also having random attacks of the dizziness, shakiness, confusion, headache, sweating, extreme muscle weakness, salt cravings... these attacks seem to happen in the late afternoon/early evening. Endo Doc split my steroids into three dosages, although she admitted there's not a scientific/logical reason for WHY this might help. But guess what? It DID help. So that's good. She said that this likely isn't an adrenal problem; it's a POTS issue. Deconditioning is a huge reason for POTS symptoms to flare, and I guess 5.5 weeks in a hospital might qualify in that regard. I am being careful to hydrate myself and avoid the heat and generously salt everything in sight!

Finally... I got to go see fireworks yesterday. It had been several YEARS since I've been able to go watch fireworks on the 4th of July. Last year, I had just had surgery, and watched far-off fireworks through foggy hospital windows. The year before, I was just plain sick. In 2010, I was about to be admitted to the hospital for severe pouchitis. In 2009, I was flaring and didn't want to leave the comfort of my bathroom... ;) And so on. But this year, I went and watched and it was wonderful. Absolutely amazing. I NEVER take things like that for granted now. Events like this are just so special and precious. I am supremely thankful when I get to experience the good things of this life... while remembering to thank the Giver of all good things.

Hannah ;)

Sunday, July 1, 2012

Post-Op Fun

Well, this week was an improvement over last week:

I had only TWO doctor's appointments, and both of them were on the same day! So I only had to have one medical day this week, and it was on Friday - I just had to get through that day, and then it was the weekend! ;)

I saw Dr. Professor and Dr. Saturday. Two doctors, one day. Boo-yah!

Dr. Professor was fine. I am still having some possible issues, so he's running a few tests to make sure that it's nothing serious. He did a quick ultrasound and everything looks good, except that I have a big ovarian cyst on my remaining ovary. He told me I could go on a medicine to prevent them, since the cyst is large enough that he expects it to be rather painful, but I would have to be in a whole lot of pain to go on another medicine at this point! They don't really bother me much. 

This is from Googling "apoyo" 
He also told me I'm looking about a hundred times better than I did at the hospital. Not being in the hospital has been the most effective treatment I've ever tried. ;) He said he was so glad I was having less pain. He said I went through a pretty unimaginable time, and reminded me just how blessed I am to have amazing support from my family. I couldn't agree more. He also commented that I seem to have a pretty incredible network of friends, as well. I agreed heartily. So family and friends: thank you, from the bottom of my heart! You will never know how much your encouragement and prayers and texts and emails and messages and letters and flowers supported me and helped me through the most difficult days I've faced so far. 

This is NOT what my ultrasound looked like
We went over my pathology from the cyst he removed. Basically, it was a benign cyst that formed around the fallopian tube and ovary and stuck itself to the wall in my pelvis where the abscess had been. Dr. Professor told me how he thinks this happened. I guess the fallopian tube is open to the abdominal/pelvic cavity. So when I had those abscesses in my pelvis, some of the bacteria got loose and went into the fallopian tube. This caused a big cyst to form to try to encapsulate this bacteria, to prevent the germs from making me very sick. He reiterated that it was a very good thing that they removed this cyst, as it was getting very large. I guess it's just not looked upon as healthy to have big masses growing inside you. Well... unless it's a baby. Never mind. 

Option A for How Dr. Saturday views my body
Dr. Saturday was also fine... he saw me in the hallway and said, "Uh oh. It's Hannah. Wait, she's smiling again! That must be good!" It reminded me how far I've come - that I CAN smile now! I feel like I was the constant Bearer of Bad News for the whole hospitalization, so it was nice to be able to say that things are so much BETTER! When you are always groaning and moaning about stuff, even the nicest of doctors start to get a wee bit antagonistic after awhile. There in the hallway, Dr. Saturday made the comment that he doesn't have any idea what else he could possibly have to do to me (surgically speaking). I reminded him that he had said that to me twice before...and two more times, he's opened me back up. He said, "Well, you keep on springing new problems!" 

Option B for How Dr. Saturday views my body
In the office, he said, "Well, you sure are an enigma." No one can figure out exactly why my body decided to go haywire with this autoimmune inflammatory reaction, but he's pretty sure that this was triggered by the trauma and "assault" of surgery (doctorspeak - they like the word "assault"). If you recall, my body also went completely haywire after my 2010 J pouch removal surgery, and no one was sure why at that time, either. This time it was weird, because it was like a delayed reaction. It doesn't make any sense, but then again, my body does NOT follow any of the rules! After each of the surgeries I've had with him, I've always thought, "Wow - after these post-op visits, I'll be totally done with this doctor and I won't ever have to come see him again!" Not that I dislike him, I just would rather have my list of doctors be one doctor shorter! ;) But each time, it has proved to be God's will for me to continue my professional relationship with Dr. Saturday. So this time, I am NOT allowing myself to think or say that this will be the end!

It was good, but weird to be back at the hospital, which had been my home for so many days... I kept reaching for my trusty IV pole, but it was nowhere to be found. ;) And that's a feeling I can get used to! I am very thankful to God, my family, my friends, my doctors, my nurses and techs (several of whom I saw and chatted with as I walked the hospital halls)... I am very blessed indeed. God is so good to me. 

Hannah ;)