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Tuesday, April 23, 2013

Feelin' POTS-y

So... to catch up... the couple of liters of IV fluids I got on Tuesday helped tremendously... until late Wednesday night. Thursday I hung in there, but needed to be horizontal about 85% of the time due to a pounding heart, sweatiness, shakiness, and basically feeling like I was going to pass out. Whenever my POTS symptoms flare up like this, my body has a very tough time tolerating any pain whatsoever. My pain, thankfully, had been SO well-controlled of late... a fact that just fills me with amazement and thanks! The problem is, when my body starts freaking out like this, any level of pain causes my body to freak out even more and simply exhausts me. So I'm learning that I just have to be a little more aggressive with the pain management when my body is struggling. That has required increasing my meds a little bit, but that has WORKED. I really feel like the pain is really the best managed it's been since I started having such bad pain three years ago. PRAISE GOD!

The POTS stuff has really been quite incapacitating. My stomach started dumping again, and on Friday moring, my heart rate was increasing by 40 bpm when I stood up, so I placed a call to Dr. FancyPants requesting more IV fluids. He was happy to comply, and the infusion Nurse Rosie (whose her can-do, go-get-'em attitude is reminiscent of Rosie the Riveter) hooked me up to an IV pole after just two sticks (the first day, she got it in on the first try!). I felt too sick to really do much of anything. I was shaking all over and just feeling really terrible. Nurse Rosie was quite concerned and told me I looked like crap (Thaaaaanks... ) and called the doctor. Dr. FancyPants told me to restart the Lomotil (med to slow down the dumping - risky at this point in time due to my obstruction issues, but I was having to pick between going to the ER for fluids or taking a chance with the medicine). He told me that I would need to go to the ER if the fluids didn't perk me up, or if I felt this bad over the weekend. Thankfully, once my body got a few more liters of fluids, I was feeling substantially better, enough so that I ran a few errands, and went to a party! I felt like a new person!

The fluids "stuck" this time for a few days... and then it's been back to dizzy, shaky, yucky-feeling Hannah again. Bummer. My pain has also spiked up a ton - just in my muscles, but it's really quite severe again. Back in October, after my sepsis hospital visit, I had to almost double the dose of my main pain med due to a pain flare (likely brought on by the severe illness). Over the last several weeks, thanks to Dr. Magic Hand's magic hands, I've been slowly reducing my dosage back to where I had been prior to the pain flare! Unfortunately, the last step down has not been well-received by my body. My pain has majorly spiked, whether from the lack of meds, POTS flare, or the fact that I also decreased my steroids just a bit. So I had to go back up a step. It's such a slow-acting medicine that it will be a good 4 days before it kicks back in and I get some relief. :( The good news is that even though I have to increase my dose slightly, it's nearly a 50% reduction of what I've been on since October, so that is fantastic!
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More good news: I've also noticed some very positive changes in my joints over the last few days. My stiffness has improved, and my joints are virtually pain-free at times! I can't even remember the last time that has happened! I am super thankful and excited about this! I've been facing tons of joint pain, swelling and stiffness without a break since my huge inflammatory reaction after my surgery last May. We had not been able to calm down my body despite massive doses of steroids, as well as methotrexate injections and other medications! I don't know if it's the steroids or the gluten-free diet or if the Cimzia is in my system now, but I guess we'll see as I continue the snail's pace steroid taper! I am very optimistic that Cimzia will be a miracle drug for my joints! Wouldn't that be amazing?

I am still on a mostly liquid diet - on good days, I add in some hummus or refried beans for protein! My stomach is now alternating between being obstructed and dumping. The dumping was for sure NOT helping the hydration status. I had to take Lomotil a few times to slow down my stomach a bit to prevent me from needing to go to the ER for hydration. Thankfully, the Lomotil didn't cause too much additional pain or issues from the obstruction area. I am thankful that I enjoyed my time this summer and fall when I was able to eat fairly "normally"! I was concerned with the massive weight gain, but my sister told me to just eat up and enjoy it, because it wouldn't always be that good. She was right, and I'm glad I did! :)

Hannah ;)

Wednesday, April 17, 2013

Musical Doctors

So...my Muscial Doctor day went far better than I dared hope! Praise God. It was a loooong day, but much was accomplished, so I'm thankful.

First stop was JP Dr. I had a bit of "good news/bad news... I was concerned that I was still flaring because I'm having a lot of joint stiffness. The good news is that JP Dr was very encouraged to see that my joints don't appear especially swollen or inflamed at this time - my arthritis is NOT flaring right now! The bad news is that JP Dr told me that the joint stiffness is probably just the way things are going to be from now on. But it doesn't necessarily indicate a flare, so that's good! Switching the hydrocortisone with prednisolone (to decrease inflammation) and hiking up the dose significantly has worked! I'll stay at the increased dose for another week (until I get another Cimzia shot in my system), then begin an excruciatingly slow steroid taper that will last, at the very least, 14 weeks, but could take more than twice as long. Then I will arrive back at my "Maintenance Dose" of steroid for my Adrenal Insufficiency. She got me set up with some paperwork stuff to make navigating life a little easier and some day when I'm feeling less offended by being considered handicapped, maybe I'll blog about it. ;)

Next, I went to Dr. Tourette's. It's been a total nightmare trying to get ahold of ANYONE in their office, and the phone tag game yielded frightening results. I truly believe that they want to help me and are willing to do what it takes (including working me into the schedule of a doctor who's booked through DECEMBER) to help me... they just have a really terrible system in place (or maybe, they DON'T have a system in place) to handle phone calls. I realized after my appointment that I left without requesting a prescription for a med that he increased... and I'm already dreading having to call him to ask for it. Maybe I'll just ask my wonderful PCP to prescribe it (who, by the way, called me last night to make sure I was okay and to see if I needed anything. She's the best).

Anyways, I reported on my rheumatology appointment, and Dr. Tourette said that he and JP Dr had a very nice conversation about me and how to best manage my steroid requirements in light of my very complicated situation (adrenal insufficiency with dysautonomia with arthritis requiring steroids with functional short gut syndrome, etc). I am so thrilled that they are working together. I told him that I would be back to "replacement" doses of steroids somewhere between 14 and 28 weeks... and he told me, "Don't even go there. Don't feel like you have to stick to some timetable. Just take it one day at a time, and listen to your body - DON'T force your it to do something it's not ready to do. I'm very patient, and we'll get there some day on your body's timetable." What wonderful words to hear from my doctor! I like him.

We are increasing the florinef (med that helps with salt and water retention) even more, although I technically shouldn't need to take this med at all. My labs, vitals and symptoms all indicate that my body DOES needs it, whether because of my dysautonomia (POTS) or adrenal insufficiency. He said that my situation is very complicated and it's impossible at the moment to sort out WHY I have the symptoms I experience. The best thing to do is listen to my body and treat the symptoms, even if we can't explain why my body acts the way it does! What a novel idea! ;) So thankful that God led me to Dr. Tourette, as he really seems like the perfect Endo doc for me. Now if only we could get his office to pick up the phone occasionally, I'd be set! ;)

Next, I went to Dr. FancyPants' infusion clinic, which is literally down the road from my house... can't begin to describe how convenient this is! Let me just say, they have this infusion stuff down to an art. I sat in the comfiest remote-controlled recliner upon which my surgically altered tush has ever had the pleasure of resting. The nurse got the IV in after only 2 tries, and proceeded to hand me an iPad loaded with games and Netflix to keep me occupied as my fluids dripped in. She listened to me on the amount of fluids I felt that I needed, and basically spoiled me rotten. And if I start feeling bad again, I'm just supposed to give them a buzz, and they'll hook me up (literally) with some more fluids!

I felt like a new person after those fluids! The change in my vital signs was impressive to all, and the change in how I felt was impressive to me! I actually felt semi-human and went home and opened my mail from the past week and picked my clothes up off the floor and caught up on stupid stuff like that that falls by the wayside when I'm experiencing incapacitating fatigue.

The bottom line of today is that I need to find somebody who really specializes in POTS/dysautonomia in a big way, and based on my past experiences and conversations with the doctors today, it seems I may have to look outside of the state in order to find this person. I think that regularly getting IV fluids may have to become a normal and regular part of my treatment regime - it just helps so much! We'll see...

I am again extremely thankful for the doctors and nurses who are taking me very seriously when I say something's wrong. They are more knowledgeable than I about treating my conditions, but recognize that I don't always fit the mold, so they ask what helps me and listen to my answer. I am thankful for my mom, who cleared her schedule (skipping her Bible study and lunch with friends) to drive me in heavy traffic to and from cold and uncomfortable doctors' offices. And I am thankful for my God, who saw me through another rough day and provided an abundance of encouragement.

Hannah ;)


Tuesday, April 16, 2013

Roses & Thorns

Okay, so I guess the whole "feeling good" thing was just too good to last... On Friday, I started feeling rather awful, and couldn't figure out why. Finally realized that my heart rate was in the 140's... oh. I've been feeling super tired, shaky, nauseated, dizzy, and just overall yucky. My muscle pain went waaay back up. I started craving salt again. I feel like I'm not on enough steroids or something, but that can't possibly be the case, as I'm on a moderately high dose of them due to my arthritis. Super frustrating when things go up and down and I don't know why... I promise I didn't change ANYTHING!

That is just depressing, so I'll share some good news! Since my last post about my GI appointment with Dr. FancyPants, my obstructions issues have been improving! I mentioned a few posts ago that I've been doing a new treatment called Airrosti, performed by Dr. MagicHands. I think of this treatment, a type of Manual Therapy, as kind of like a chiropractor for muscles. Dr. MagicHands moves around the muscles and fascia to make sure that things are aligned properly and breaks up any knots and stuff (I am not explaining this very well). Frankly, I'm not totally sure that I completely understand what it is that he does, but I do know this: it is helping my neck and shoulder pain. I try/have tried so many different things - heat, ice, creams, ointments, stretches, exercises, meds, chiropractors, massages, P-STIM (similar to acupuncture) - and most of these things have helped to some extent - but this has really provided the most relief for me! Dr. MagicHands has been very clear from the start that I have underlying autoimmune issues that he cannot "fix." For awhile, he wasn't sure that he was actually helping me and got very close to referring me on to someone else. When I improve, I am never sure why exactly... but I really do think that it's his treatments that are making a difference with my pain! And I am very thankful for his Magic Hands for working their, well, magic!

I asked him to work on my belly as well... he initially refused, but after speaking with my PCP and Dr. Saturday, he agreed to try. Dr. Saturday told him, "If you think it could help Hannah... try it!" His Magic Hands immediately found the "problem area" on my belly (without me even telling him where it was!). He basically tries to move around the intestines to try to loosen up the adhesions. It's tricky because I have to keep my abdominal muscles relaxed so he can actually feel my intestines. The intestines themselves are so slippery that it's tricky for him to palpate them (and it's not the most comfortable sensation ever to have someone essentially deep massaging your sore belly). It's kinda weird, but I *think* it's helping... I've been able to move to some less liquid foods like rice cereal and refried beans... and I have not had pain or obstructions after eating them! I am very hopeful that this will help!

Of course, my body is all about extremes... would you believe that last night, after nearly a month of partial obstructions, I started dumping?? I lost over 2 liters of fluid in less than 12 hours. Although I've been pushing fluids, I'm sure I'm getting a wee bit dehydrated. Of course, the dumping doesn't help the dizziness, shakes, or high heart rate any! It's been a flurry of calls back and forth between various doctors, most of whom have been incredibly nice and responsive...

Tomorrow I see JP Dr, then Dr. Tourette (to check my shakiness, dizziness, tachycardia, fatigue, etc - bit nervous about this appointment, as over the phone, they basically told me that what I said was happening wasn't possible and I should be tapering off both kinds of steroids...), and then on to Dr. FancyPants to get tanked up with a few liters of IV fluids.

Tonight I have a pounding headache and unrelenting nausea to top it all off... the "methotrexate hangover" that happens about 24 hours after I inject myself with that chemo medicine. Some weeks it's worse than others... this week happens to be in the "worse" category. ;)

I recently saw something online about how each day is like a rose...whether we see the rose or the thorns is all in our perspective. Today, I'm choosing to be thankful for the roses in my life rather than focusing on the thorns! "Give thanks in all circumstances, for this is God's will for you in Christ Jesus." (I Thes. 5:18). I am thankful for the great men and women that God has provided for my medical care. My doctors and nurses really go above and beyond (although I'm reserving judgement regarding Dr. Tourette) to provide excellent care for my ever-changing, always complex needs! I am thankful to God for His provision of these folks who care about me as a person and are willing to think outside the box to make things work for my unique needs! Also thankful for my family for the care that they provide me daily... and for my mom, who's dropping her plans for tomorrow to drive me all around the metroplex as I play "musical doctors."

Hannah ;)

Thursday, April 11, 2013

Between a Block and a Hard Place, Part 2

Today I had my long-overdue GI appointment. It's been over three weeks of liquids only, and I was getting a little tired of that! I decided to push it a little bit and had corn puffs for breakfast and refried beans for lunch - not quite liquids, but still fairly pureed/soft food. I decided that if it blocked me up, well, Dr. FancyPants would just get to see me when I was obstructed. ;)

Thankfully, I did NOT get obstructed, despite being a bit more free with my diet! Dr. FancyPants was really nice and wonderful. I really like him a lot. He said that, based on the small bowel follow through I had in January, he is not surprised with the problems I'm having. On the January test, once the barium hit a certain point in my intestines, it significantly slowed down (practically stopped) for a long time. Prior to that, the contrast was moving very rapidly, and after it finally passed that spot, it moved rapidly again. So the issue isn't an overall motility problem; more than likely, it's a scar tissue/adhesion issue. He said that I have a pretty significant issue; things stopped even though I only drank liquid contrast (and apparently, there are different thicknesses of barium, and I was given the "thinnest" one, so it should have moved through with no trouble whatsoever). Since even this liquid had trouble moving though, any fibrous, hard-to-digest food has very little hope of safely passing. Dr. FancyPants also read Dr. Saturday's op note from my last surgery and seen that they had to take down some extensive adhesions in the area where my abscesses were, so it's likely that I formed more adhesions especially in that area. Dr. Saturday and team did take significant precautions against more scar tissue. They put several sheets of Seprafilm in my belly during surgery. This material is supposed to decrease scar tissue formation.

Dr. FancyPants told me that the only solution to my obstruction issue is surgery... and emphasized that they must really not want to do surgery on me ever again. Most people are rushed into emergency surgery after just a day or two with an obstruction, so it's pretty hard-core to make someone suffer with an obstruction for as long as I did in November. He said he felt terrible for what I've gone through and that the obstruction must have been a miserable experience. I'm not gonna lie: it kinda was. ;) He described the process of what the surgeons would have to do to fix my adhesions, and described the potential and likely complications of this procedure in my case. This completely cemented in my mind that I will gladly eat a liquid diet for the rest of my life, if necessary, in order to avoid this surgery and the subsequent complications that are likely to ensue because of my various diseases, previous surgeries, autoimmune reactions, etc.

He did give me some medicine that's supposed to help with the pain of the blockages without slowing down the intestines. I used to take this when I had UC, and it helped a lot with the cramping pain, so maybe it will help with this! Apart from that, I need to continue to be extremely careful with my diet, but add in more calories, especially protein, as I've dropped several pounds since this started. While I was happy to see some of the steroid pounds fall off, the doctor was less than thrilled with the rapid weight loss.

Dr. FancyPants left me with a glimmer of hope - he said that often times, the intestines will eventually "settle" in a better position, and I'll be less plagued with obsturction issues. I think that this is true - I seem to go through cycles where the obstructions are worse, then I'll have weeks of dumping. So hopefully things will straighten themselves out soon so that I can go back to eating real food again!

Overall, I've had several really good days in a row! Still not sure WHY, but praising God and LOVING every minute of it!

Hannah ;)

Tuesday, April 9, 2013

Best Week EVER!

So, the title may perhaps be an overstatement... but this week has been really, truly good!!!


A Recent Photo of Semi Colon
I feel like a different person! Well, actually, I feel somewhat like MYSELF, not the weird sick antisocial, unproductive Hannah who does nothing but sleep, too tired to get dressed or get things done or leave the bed, much less the house! It's WONDERFUL! I still don't have great stamina, but this week has been such a tremendous improvement!

I also am having a LOT less pain for the most part, although the last few days haven't been stellar. For the last week, I've been able to COMPLETELY ditch one of the hard-core pain meds that I have had to take almost daily for a year. I hope that God will allow the pain to continue to decrease so I can get OFF (or at least significantly reduce) my pain medicines! That would be amazing and would shock my doctors (in a good way)! It's been simply amazing and incredible to be in less pain!

Yeah, that's right... I was taking rat poison
Also, I got word this week that I can finally stop taking anticoagulants! I've been on them for seven months due to the blood clot that formed in my arm after PICC line #7 back in late September. This med required constant tweaking and weekly (or biweekly, if the doctor was feeling generous) trips to the doctor for finger pricks, as my blood levels NEVER seemed to be right. I am so thankful to be able to ditch that med!

The not-so-great news is that my tummy is still really struggling. I am continuing the liquid diet. Every few days I attempt some food like corn puff cereal in lots of almond milk (that's my healthy choice. My other choice has been Cheetos). I choose things that melt to practically nothing, so theoretically, they shouldn't block me up. Well, theory and practice have yielded different results - I have more pain and feel partially obstructed after eating pretty much anything that's not liquid.

Missed it by *that* much!
I called Dr. FancyPants' office (who, once again, was rapid in their response to me, which I GREATLY appreciate). Dr. FancyPants' nurse called back to say that he recommended a course of antibiotics - he suspects that I have bacterial overgrowth. I'm pretty sure that I do NOT have bacterial overgrowth... you really don't want to know how I can tell this, but trust me - I've had that kind of issue in the past and it makes its presence known in ways that are hard to miss or ignore. Since I'm not experiencing those symptoms right now, I am very hesitant to potentially mess up my internal chemistry with unnecessary antibiotics! I tried to tell the doctor through the nurse that I didn't feel bacterial overgrowth was my issue... but really, I need an appointment so I can speak with the doctor directly instead of playing telephone relay. I had the opportunity to see his PA right away, but decided to wait until I can see Dr. FancyPants himself. Obviously I don't mind PAs at all, but I really don't want to have to explain my story to yet another person right now when Dr. FancyPants and I are still getting acquainted.

The Ergonomic Cimzia Shot!
If only all injections were this easy to grip.
The other not-so-great news is that we have not been able to get the inflammation and swelling in my joints and muscles under control. So... this week, I started a giving myself a new shot, Cimzia, a biologic treatment similar to Remicade and Humira, medications I tried for UC and pouchitis, respectively. JP Dr has wanted me on this med since I first saw her back in June. I've been holding out for a long time, but I agree that we have more or less exhausted other options - dietary changes (gluten-free since late January), increased methotrexate, increased steroids, and changing the type of steroids. Despite all this, I continue to have pain, swelling, stiffness in my joints (my hands, feet and hips are the worst) and in the muscles of my neck and shoulders. I hope that Cimzia works! JP Dr. hopes that this will put my arthritis in remission AND calm down my immune response to stress and illness (you know, the scary overreaction that causes my body to go into shock when I have a surgery or get sick). There's some trepidation about the girl with the long history of serious intra-abdominal abscesses now taking THREE immunosuppressant medications, but JP Dr feels that the potential benefits outweigh the possible risks. If I'm not seeing marked improvement after 3 months, I will discontinue Cimzia.

Although things obviously are far from perfect, I am really, truly feeling SO MUCH BETTER! I am not really sure why... Could it be the gluten-free diet finally kicking in after a few months? Maybe it's the Manual Therapy called Airrosti that is helping my muscle pain. Or perhaps it's the increased steroids masking everything. Maybe the exercise I've been faithfully doing this year is finally helping after months of no change. Who knows why - I'm just thankful that I AM feeling well... and praising God for His kindness to me!

Hannah ;)

Monday, April 1, 2013

Between a Block and a Hard Place

Thankfully, I finally got over the bug or whatever it was that was causing all the yucky tummy issues and ER trips... but in classic Semi-Colon form, my body has come up with a new complication. Last Tuesday night, I got a bad obstruction. I know exactly why I got it, and it's my own fault, so I feel kind of irritated with myself. :( I was a guest and was offered a bowl of cooked carrots.

My Downfall
I LOVE veggies, but I really can't eat them raw without getting an obstruction. With UC, I couldn't eat high-fiber, "roughage" type foods. I had a few months after my colectomy when I could eat apples and salad and anything... then I started getting obstructions and had to learn to say no to high-fiber foods once again. Until recently, cooked carrots were on my list of "safe" veggies (veggies I can eat without obstructing)... but even they've started giving me trouble over the last several weeks. So I KNEW I should probably say no... but I really wanted to eat them and I was hungry and didn't want to be rude and I chewed them really well... and I got an obstruction.

I was up for most of the night pacing and drinking pickle juice and standing in the shower and using the heating pad and jumping and drinking hot chocolate (not all of these activities were performed simultaneously). I was completely obstructed and the pain was sharp enough to leave me breathless and doubled over. I came pretty close to going to the ER, but thankfully, I was able to tough it out at home, and after several hours, things started moving again. It took a few painful hours for the carrots to work their way out of my system.

Delicious, but not so nutritious
Usually, I have total relief from the pain as soon as the blockage passes, and it's just the most beautiful feeling! This time, however, while I felt much better, I could feel that the narrowed area of intestine was really inflamed and unhappy, so I took it easy with the food the next day - liquids and pudding only. The following day, I decided to get crazy and added a little bit of grilled chicken to my diet. This was met with much protestation and another obstruction, so I went back to liquids and pudding only. Over last weekend, things didn't really get better - I continued to have partial obstructions every time I tried eating anything more substantial than liquids -- and even things like rice cakes were causing obstructions. On Monday, Dr. FancyPants' nurse redeemed herself for her Potassium Snafu by promptly returning my call, relaying a message from Dr. FancyPants and giving me her direct number. Dr. FancyPants recommended sticking to liquids for a few more days. He had me get some bloodwork and gave me instructions to go to the ER if things got at all worse, and to call in a few days with an update.

Things seemed to calm down, and as I stuck to a completely liquid diet, I had a few days with less pain in the narrowed area of intestine. My bloodwork came back okay (slightly high white count, but that's my norm), so I called the doctor and left a good report. Sadly... things are not going at all better as I try to add in a few gluten-free ginger cookies and stuff... partial obstruction every time. Super frustrating... and I'm getting pretty hungry. ;) The last time I had "real" food was 11 days ago when I had that chicken.

When I get a blockage, I can feel exactly where the obstruction is - and it's nearly always in this one certain spot, likely an area of narrowing from scar tissue. It's been giving me progressively more and more trouble since my obstruction in November, and my list of "safe" foods has grown shorter. I think that this obstruction made my intestines irritated and swollen, so the narrow area is even narrower than usual. I would have thought that the swelling would have gone down after a few days on liquids only... but I guess not. At this point, I really don't know what to do... I don't know how much longer I can do an all-liquids diet. I'm probably going to have to talk to the doctor again this week and see what he says. Last week, he pointed out that unfortunately, there is nothing that can be done short of surgery, and surgery in my case is a last resort -- done only if the obstruction becomes life-threatening. Surgery is also NOT a long-term fix for this issue... sure, they'd be able to free up/resect the area of blocked intestine, but each surgery causes more scar tissue to grow, which can cause more obstructions down the road.

I worry that it's only a matter of time until I become completely obstructed again and wind up in the hospital facing surgery. Not that any hospital experiences are fun, but my obstruction in November was particularly unpleasant. And NO ONE wants me to go under the knife again. I will be responsible with my diet, but ultimately, I am not in control of this - God is. Last time I had an obstruction, nothing specific that I ate caused it. And just when surgery seemed imminent and inevitable, God caused the blockage to pass on its own. I am confident that He can heal me and open up this narrowed area if that is His will. And if not...well...it's been nearly 11 months since my last surgery, so I'm probably about due for another one. JUST KIDDING.... I pray that if it's His will, this obstruction will pass... ;) But if not, His will, not mine be done.

Hannah ;)