Thursday, November 1, 2012

Shot Clinic

When I got sick in September, there were three factors that made the situation so critical:

1. My IBD. I am missing 7.5 feet of intestine, so I don't absorb fluids well anyways. I became extremely dehydrated extremely quickly. I estimate I had lost over 2 liters of fluid from my ostomy alone (plus more from vomiting) by the time the paramedics arrived, and I lost a few more liters at the hospital.
2. My autoimmune reaction that causes my body to overreact to stresses/illnesses.
3. My adrenal insufficiency, which makes my body unable to respond to the stress of illness, causing my blood pressure to drop, my heart to race.

All these things combined resulted in me tottering on the brink of shock and sepsis just a few hours after getting sick. Obviously, I can't do anything about the fact that I'm missing intestine. I'm on more methotrexate now to try to suppress my immune system so that I won't have another SIRS reaction when I get sick. And, I am teaching my parents how to give me shots.

As an Adrenal Insufficiency patient,. I am supposed to carry around a vial of Solu-Cortef (steroid) and a needle. If I get severely ill or injured (e.g., if I am in a car wreck or begin vomiting), I'm supposed to immediately inject the mega-dose of steroids into a muscle. When a normal person experiences a highly stressful situation like that, their body gives them a big jolt of cortisol to help them cope with the trauma. My body can't do that, so I am at high risk for going into shock in these situations unless I inject steroids. 

I think that giving myself a steroid injection before calling 911 would have really helped me be more stable. Once I got to the hospital, it took them HOURS to give me the steroids my body so desperately needed - and I started feeling much better very soon after I got them. I insisted from the beginning that I needed more steroids, and the doctors agreed, but red tape and bureaucracy and pharmacy and delays prevented me from getting the dose until I got to the floor from the ER!

The Solu-Cortef is not an easy shot to give. The medicine is in powder form, so you must first reconstitute the powder, gently roll the vial to mix the powder and sterile water, then draw up the correct amount, and administer the (big) shot into a large muscle. I was far too sick and out of it to have been able to give myself a shot - I was practically incoherent most of the day - so someone else needs to know how to draw up and give the medicine in the event that I become incapacitated.

So, I made a little Solu-Cortef kit, stored in a well-labeled bag kept in an easily accessible pre-determined location. It contains the med, two syringes and needles, alcohol swabs, bandaids, step-by-step instructions on how to give the shot, and a note to show medical personnel (it says that I am adrenally insufficient, has my normal steroid dosage and the dosage of my shot, and my Endocrine doctor's number).

Then, I held Shot Clinic. I showed my parents the kit, and walked them through the steps of mixing the med, drawing up the liquid, choosing an injection site, and giving an injection! Then... it was time to practice. I have to inject methrotrexate semiweekly, so there's lots of chances to try. The meth shot is much more user-friendly than the steroid stuff, but the process is very similar. They both tried their hand at it. I am proud to say that they both performed admirably, successfully gave me injections, and are well on their way to their honorary nursing degrees. ;) Just another example of the sacrifices my parents continue to make to take care of me... giving shots was never on the list of life skills either one wanted to learn, but they have taken it in stride and bravely rose to the occasion. I am thankful for their love and care. And I have greater peace of mind knowing that they can give me a shot if I were to get very sick again - although I sincerely pray that there won't be a "next time" for getting so sick!

Hannah ;)

Wednesday, October 24, 2012

Random News...

So, I realize I've been slacking at blogging lately. Sorry. I guess after three years, I grow weary of writing about my health issues from time to time! But I do have some bits of news to report...

I went off my methotrexate (arthritis treatment) for a few weeks as I recovered from the serious illness that landed me in the Step-Down ICU for 5 days. I was able to resume the shots last Thursday, but my body could definitely tell the difference. I suffered a bad arthritis flare, needing to sleep constantly, with stiff, swollen joints that made life even more painful than usual. Last Sunday night, the pain came to a head and was simply intolerable... so I wound up in the ER. It was an efficient trip, if I do say so myself... I went in, got an IV, received a couple pain shots, and was back at home in about three hours!

Thankfully, by this weekend, the flare-up went back under control. I'm doing methotrexate shots twice a week now - we are hoping that spreading out the medicine will make it easier for my body to tolerate. The shots give me fatigue, migraines, and nausea, but I think that it's worth it to keep my arthritis under better control. JP Dr also believes that a higher dose of meth will help prevent my body from having the SIRS reaction to illness or stresses in the future.

I was supposed to go see Dr. Saturday the morning after my ER adventure. I called in to ask if I really needed to come. Misinformation told me that I no longer need to follow up with them unless I develop problems. It's not often that I get to cross doctors off my list, so I was quite excited to hear this news! I like Dr. Saturday, but I really prefer fewer doctor's appointments... yay! I am thankful that the wound by Squirt is doing better and doesn't require any treatment.

Squirt has decided that things were too boring, so he started prolapsing - protruding much further than he should. That makes life uncomfortable and complicates his management. I've had some issues with leaks, which is very unusual for me. Squirt v 3.0 has been quite a challenge compared to the earlier versions. Hopefully we'll reach a truce soon. ;)

I've been able to taper down on my steroids a bit. JP Dr had instructed me to double my dosage for several weeks. After I sort of stabilized, I started to feel a bit over-steroided - constantly hungry, very emotional, face swelling more than usual. That was my cue to start tapering a tiny bit. I have gone down two tiny steps over the past couple weeks. We'll see how low I can get before my body protests. I  still have many weeks before I'm back to my pre-surgery dosage. And my pre-surgery dosage was 50% higher than the dosage I'd been at for the previous year. I have no idea why my steroid needs fluctuate so much, or why they are so much higher than what "normal" people need. Just another mystery of my body!

Thankfully, with the exception of a few days here and there, my POTS symptoms have been much better of late. I have much less dizziness, shakiness, and heart racing. That's so encouraging and exciting!

I continue to have my blood checked often to monitor my clotting times. After concern that I was still clotting too fast, last week's results were quite a surprise - my blood is now clotting way too slowly! So I'm trying to avoid major trauma and things that could make me bleed out. ;) I can tell that it's going to be a constant balancing act for the next several months!

While my life still seems to revolve around my health issues, I'm reminded that God has allowed a lot of improvement in many ways. I am able to eat and enjoy food more than I have in years! I have compassionate doctors who listen to my concerns and allow me to listen to my body. I'm learning how to manage my health issues. Celebrating small victories is the name of the game!

Hannah ;)

Sunday, October 14, 2012

Happy 3rd Birthday, Squirt!

Dear Squirt,

Happy birthday!
I can't believe you're three years old today... not that it's been totally your fault, but it's been quite the experience so far! I sincerely and earnestly hope that our next three years together will have quite a bit less excitement and adventure than the first three. I must say, there's never been a dull moment with us, has there? In three years, you've been born, re-made, and re-made again. Here's hoping you can maintain your current form for several years to come!

Squirt, your birthday also symbolizes the end of my struggles with my inflamed colon (whether or not it was the end of my illness is sort of up for debate, as I've continued to be quite sick, and my doctors lately are leaning towards a "Crohn's disease" label for me)! While removing my colon ended up being less than the promised "cure," I do not regret my colectomy. In fact, I see you, Squirt, my ostomy, as a symbol of the freedom I enjoy since surgery.

I found this on Google Images - thanks! ;)
To illustrate the complications of life with a sick colon: before surgery, even a simple trip to the grocery store was a stress-inducing experience. I got rather panicky if I wasn't behind the wheel of the car - only the driver has the freedom to randomly pull over at gas stations to use the bathroom. Once I arrived at the store, I needed to know where the bathroom was inside. The urge to "go" seemed to always strike when I was at the furthest point in the store from the bathroom. To counter this, I usually chose to shop at small grocery stores... and when the urge came, I'd just leave my cart and make a run for it, hoping to make it on time. ;)

Squirt, thanks to you, I am no longer at the mercy of an inflamed, ulcerated colon... no more must I exercise my bathroom radar. I don't have to wake up an extra few hours early or avoid eating breakfast to attempt to curb the number of bathroom trips. I don't have to dread or fear sudden urges to go to the bathroom during church, sporting events, concerts, car trips, during school tests, and I don't have to try to hide or explain embarrassingly interminable bathroom trips. I'm fine being the passenger in a car. In short, despite wearing a bag of poop on my belly, I'm so much more "normal" than I ever was with my sick colon.

While living with you was not something I would have chosen or desired, I have wasted hardly a moment in thoughts of discontentment or wishing that I didn't have you. I'm thankful to have you, and I'm thankful that my colon is gone. I praise God for the freedom I've enjoyed, thanks to you. So to my eternal "sidekick:" many happy returns.

Hannah ;)

Thursday, October 11, 2012

A Bleeding Update

I followed up with my doctor last week, and she prescribed me anticoagulant pills, which I started taking this weekend. I have to follow up with her a few times a week to get my blood levels checked - they want to keep my blood "thin:" it needs to clot much more slowly than normal. Thankfully, they are able to check this with a mere finger stick - no big needle in a vein needed, which is great news for me, my veins, and the lab tech!

On Monday, I followed up with the doctor for the second time. Unfortunately, my levels are quite low- my blood is still clotting "normally," and they'd like it to clot much more slowly than that. The doctor commented that people typically have to stay in the hospital until they are successfully transitioned onto an oral anticoagulant and their levels are adequate - I'd STILL be stuck in the hospital! I should probably send Dr. D flowers for allowing me to stay at home. If I'd have stayed in the hospital, I probably would have caught someone else's bugs, had poor pain control, be awakened several times per night, be continually poked, kept the entire nursing staff busy trying to keep an IV going... and I would have probably developed some new problem. I just don't do well in the hospital. Have I mentioned I'm thankful that I'm at home? ;)

Tuesday was a day of great rejoicing, as I finished my twice-daily anticoagulant shots. I was running out of non-bruised places on my hips to inject!

I noticed that all the veins on the right side of my upper body are sticking out in a lovely pattern - I look like Spiderman on that side, which is really cool! Unfortunately, despite my best efforts, I still lack the ability to make a web or swing myself between buildings. I will keep trying daily, although I do have to be careful to not fall in my anti-coagulated state. Bleeding out in the process of saving innocent citizens from evil villains is not cool.

Due to my brush with death a few weeks ago, I've skipped two doses of my methotrexate. The meth is supposed to keep my arthritis in remission. Well, I guess it was doing quite a good job, because without it... I feel terrible. Since Friday, I've been simply exhausted - sleeping away most of the day, and still lacking energy when I do wake up. All my joints are terribly stiff, swollen, and achy. I feel pretty bad most of the time. The doctor advised me to just lay low this week... not that I have the energy to do otherwise... My pain has definitely increased quite a bit, and so I've increased my meds accordingly, but really wish I didn't have to. Hopefully the methotrexate will kick in really quickly and destroy the inflammation in my body that's causing all the pain.

In happy news: while I was in the hospital, I changed my bag and discovered that the wound beside Squirt is now TOTALLY HEALED. That's right! ;) YAAAAAY! Praise God! It's a small thing, but I am incredibly thankful for this healing. And this time, it didn't take 9 months - it "only" took 4.5 months! I recently also passed up the one year anniversary of kissing Edgar the WoundVAC goodbye - I am so thankful for that! I had an open wound on my backside for over 9 months, and I still shoot up many a thankful prayer almost each time I sit down and DON'T experience the pain of sitting on an open wound. That was a long, hard road, and I feel very blessed to be on the "tail end" of butts about it! ;)

Hannah ;)

Thursday, October 4, 2012

Home, Back Again, Home Again: Part II

When I was in the hospital, I didn't sleep very well - someone comes in to wake you up just about every hour. But each time I woke up, I was momentarily disoriented until I heard the beeping of my machines. On Tuesday morning, I woke up and was overjoyed to hear only the whizzing of my fan and to watch my own bedroom come into focus. Best feeling ever. My pain was a lot better, except for a very sore neck and right shoulder, which I attributed to laying around on the lousy hospital bed for several days. ;) As I stretched and woke up, I noticed that my right elbow seemed really swollen. I had been poked there unsuccessfully numerous times during my hospital stay, and I now had a big hematoma from all the sticks!

Tuesday was a follow-up appointment with JP Doctor. I still have visible swelling in some of my joints, but they are much better than they were when I first got out of the hospital this summer. Overall, she is pleased with my steroid level - it's a lot more than I should need for just replacement doses, but the amount I'm on seems to help me stay functional. Whether the roids help from an adrenal standpoint, a POTS standpoint, or an arthritis/autoimmune standpoint, I don't know, but it's working! JP Doctor also got to hear the whole story of my hospital visit! She thinks that I had the SIRS as a result of my autoimmune issues - my immune system wildly overreacted to what should have been a "normal" illness. The conundrum seems to be: I take methotrexate and steroids to suppress my immune system in an attempt to keep my body from attacking itself. Unfortunately, it seems that at my dosage, I'm immunocompromised enough that I'm susceptible to getting sick, but not suppressed enough to prevent the SIRS from happening when I get sick. So basically, I'm suffering all the downsides of suppressing my immune system...without reaping any of the benefits. JP Doctor wants me to resume methotrexate at a higher dosage just as soon as possible once I'm off antibiotics, as she believes that my immune system is still dangerously hyperactive. 

I noticed my arm was feeling more swollen, and it occurred to me that this was the arm that hosted the PICC line. I showed JP Doctor my arm, and mentioned that I thought I should probably get a sonogram of my arm to make sure I didn't have a blood clot. She joked that she should just give me my own prescription pad, since I seem to know what I need. She agreed that the test would definitely be a good idea, just to be safe, so I left with an order for a sonogram. I was to find an imaging place in my area that would do the test. 

As I exited the car upon arriving home, however, that timeline changed. I noticed that my right arm was very heavy. Looking down, I barely recognized the huge, purple, numb limb. My mom and I grabbed a few things from around the house and did a quick about-face and drove to the ER. I was put at the top of the list at triage, and was taken back pretty quickly - I guess loss of limb is pretty high on the priority list.

I was terribly disappointed to have to return to the hospital less than 24 hours after being discharged! And it felt so weird to be in the ER and NOT feel terribly sick or in terrible pain - I've always been so out of it in the ER! An ultrasound confirmed that I did, indeed, have a large blood clot in my right upper arm. The PA said that the PICC line was more than likely the cause of this clot. He asked if I was in pain - the arm did hurt some, but not much - and he diagnosed what I had assumed was a bad crick in my neck as referred pain from the clot. He said that I'd follow up with Dr. D, the internist who took care of me during my last hospitalization. Dr. D would start me on anticoagulant shots, and then move to an oral anticoagulant. I started to ask a few questions, and the PA kept saying that he wasn't sure, but Dr. D would answer that. I asked, "Is that it? So I just leave now, and make an appointment with Dr. D?"

The PA frowned and said, "Oh, no, you aren't going anywhere - you have to be admitted here for several days." 

At first, I thought he was joking... he wasn't. I could feel the tears welling up in my eyes. I started rambling... asked if I HAD to be admitted - I JUST got out of the hospital... how long would I have to be in the hospital... did I HAVE to be admitted? Was there any way I could just go home?

He apologized and said that it just wasn't safe for me to be walking around out of the hospital until my blood levels reflected an adequate level of anticoagulant. Once you form one clot, it is very likely that you will form another one, or that the current clot will continue to grow. Also, there is a small chance of part of the clot breaking up and going to the lungs or the brain, which is very, very serious. It is standard for people with clots this big to stay in the hospital for several days, where they are monitored very closely. He left to get the papers in order and find a room for me. 

I started trying to call to cancel some previous engagements, but I had no reception in the room. I wandered the halls for a bit without success, and finally ended up back in the ER lobby to make the calls. After a few minutes, my nurse emerged. "THERE you are! Everyone's looking for you so you can give yourself a shot so they can send you home!" 

I thought he was joking with me, and said, "You're just saying that to lure me back to the ER - you're scared I'm going to run away!" He said, "No, really, they decided to send you home, you just have to give yourself a shot first." I kept asking why, but he wouldn't give me a straight answer, so I wasn't sure if I should believe him or not. As I got back in my room, my mom confirmed that I was going to go home, but she didn't know any details, either. 

The nurse brought in the anticoagulant, and said that I had to demonstrate that I could properly give myself an injection. By God's providence, I've not only received this shot daily after each of my surgeries, but I had also administered this particular injection to many patients when I was a nursing student! Lemme tell ya, it's more blessed to give than to receive. That stuff stings like a bee. 

After demonstrating my proficiency, the doctor and PA came in. They said that upon speaking with Dr. D, he said that he felt I could take care of myself at home, as long as I could self-inject the med and promised to follow up with a doctor within 24 hours. At that point, I would have agreed to inject myself in the eye if that meant I could go home! Dr. D, you are a champ!

So, after an exciting day, I found myself more thankful than ever to say good night to MY family, slip under MY covers in MY room in MY lovely home... without the beeping of machines, the hassle of tubes and wires, the interruptions of nurses and techs and doctors... After going home, back again, and home again, I feel that I can say with confidence: 

There's no place like home. 

Hannah ;)

Wednesday, October 3, 2012

Home, Back Again, Home Again: Part I

Many thanks to all for your encouragement and support during my last hospital stay! I wasn't up for many visitors, but I was so thankful for the love and care that so many people showed me!

So...Sunday night was a rather challenging night. I had to skip many of my oral meds for the first few days of the hospitalization - I couldn't keep anything down, and even if I had kept it down, I was unable to absorb anything.The doctor replaced many of the pills with IV medications. One of hte meds I had to stop was my main pain med, one that stays in your system for several days. So, although I skipped it on Thursday, Friday, and part of Saturday, I didn't feel the effects until Sunday. And wow, I tell you what, that medicine has been working great, because without it, I was suddenly in a ton of pain on Sunday night. 

It was the weekend at the hospital around shift change - sounds like the perfect set-up for a tragedy of Shakespearean proportions - the absolute worst possible time to have a problem that requires your nurse (who just wants to go home) to page a doctor (who is a random doctor who's never heard of you before). There was quite a bit of delay and drama and miscommunication and misunderstanding... and in the meantime, I suffered. I am so thankful that I was at a hospital just a few minutes from home, so my mom popped in to advocate for me. By midnight, over 6.5 hours later, we had a slightly better plan in place, and I was able to be comfortable enough go to bed.

Monday morning dawned, and my nurse broke the news to me that several of my electrolytes were pretty "off," so she doubted I'd get to go home that day. I was really bummed, but thankfully, the nurse talked with the doctor, and they cut me a deal: if I could drink down a very, very nasty concoction of electrolytes, they'd allow me to go home. If not, I'd have to stay until late evening/early morning Tuesday to go home. Guess what I chose? ;) I would have consumed a few dozen electrolyte shakes to get out of the hospital! 

This hospitalization left me with very mixed feelings. On the one hand, it was sort of ideal. I came in very sick, but the doctors and nurses knew just what to do, and they did it, after consulting with my specialist by phone while I was in the room (so I could add details as needed). After I was admitted, I woke up each morning feeling substantially better than I had the day before. As I prepared to go home, I had to change back to oral meds, eating by mouth, and drinking LITERS of fluid. My body responded wonderfully, absorbing pills, food, and drink. I felt more energetic and healthy and strong. It's rare that I leave the hospital feeling better!

On the negative end, it's very scary how quickly I went from feeling fine to being septic! We'll never know for sure what exactly I had going on - the doctor thinks I probably had a viral GI bug, plus a bacterial infection in my blood (called a superinfection - you are weak from fighting off a virus, so a bacteria easily infects the person), so there's no real way to prevent this reaction.

Please join me in thanking God for bringing me through another hospitalization! And pray that I will be able to stay healthy and that God would protect me rom further SIRS reactions!

Hannah ;)

Sunday, September 30, 2012

Same Song, Nth verse

Same song, ??th verse
Lil bit louder
and a

I'm writing from my home away from home... yeah, don't make me say the H-word.

I had a good run there for about two weeks! Pretty decent energy, good appetite, not much shakiness or dizziness! Then, I started dumping a little, then my pain kinda spiked. Neither one was awful, but each was a small step in the wrong direction.

Early Thursday morning, I started dumping very, very badly, and then started vomiting. Seemed like just a tummy bug... but alas, it took all of about an hour of this until I totally crashed and was an incoherent, shaking, sweaty mess. I felt so bad that I actually told my mom that we needed to call 911... yeah, it was that bad. I really felt like death.

I'm sure my rescuers were heroic and brave, but I was way beyond noticing them - I was just focusing on breathing in one more time and breathing out one more time. A couple of guys got to work right away trying to get an IV in me. I am a terribly hard stick to begin with, but then you add in dehydration, and it's gonna be quite a challenge. After a couple sticks each, they somehow got a baby IV in and immediately started dripping in fluids and medicine.

When we got to the ER, everyone kept poking me all over the place, trying to get in more IVs so they could get more fluids and meds in me, since I was massively dehydrated and continuing to lose fluids. My belly hurt so bad. My white count was through the roof, and my lactate was elevated, which is a marker for sepsis, infection in the bloodstream. Finally, they put in a PICC line (#7? I think?). The doctor called Dr. Saturday, and they deliberated about doing another scan, but decided to wait.

The doctors believe that I have some kind of infection, and my body had that Systemic Inflammatory Response Syndrome (SIRS). This can progress into sepsis if not treated quickly, so the ER doctor said it was very good that I came in by ambulance, or I could have gone into shock sitting in the waiting room. I was thankful for how quickly everyone worked to help me (and this includes Mom and Dad for sacrificing their day, among other things, to sit in the ER with their incoherent daughter). Usually in the ER, you see the nurse or doctor once in a blue moon, but we were rarely alone -- there were often three people in the room working on IVs, orders or monitoring me to make sure I was okay. The ER doc introduced me to the internist (Dr. D) who would be looking after me in the hospital. He was wonderfully smart and funny and nice. God was so good with His perfect timing and with providing some amazing caregivers.
So that's how I found myself back in the hospital, on IV antibiotics, stress-doses of steroids and my other meds in IV form.

I was very out of it for most of Thursday, but began to perk up a bit by Thursday night. Until Friday evening, I felt a bit stronger, but still had pretty bad nausea and belly pain. By Friday night, however, I turned a corner, and on Saturday, I started to feel like myself again. Praise God!

Hopefully I will be able to go home sometime tomorrow! This would be a very short stay for me, so I'm excited (but wish I could go home today). I'm eating again today, and they have turned down my IV fluids, and I'm trying out pills instead of the IV forms of my meds. I just need to stay hydrated, absorb my medications and eat and I think I'm almost there!

The SIRS is what they think happened after several of my surgeries - I usually get terrible pain, elevated white count, fever, and overall feel absolutely awful. ;) I asked about how to prevent this from happening again - basically, don't have adrenal insufficiency, don't have autoimmune issues, and don't take any immunosuppressants to treat the autoimmune issues. Oh, and don't have underlying dysautonomia, which already causes problems with heart rate and blood pressure. And having all your intestines would probably help, too. ;)

This came on scary fast, and it's a bit disconcerting to be told that this can happen to me as a result of any illness, surgery, or stressor. The doctor emphasized the importance of being very aware of my fluid status and heading directly to the nearest ER the moment things start going south.

Thankfully, God is in control of all of that... and I know I can trust Him.

Hannah ;)

Wednesday, September 19, 2012


So... today was an interesting visit to Dr. Saturday!

I went to see him for the procedure on the weird wound-thingy by Squirt.

Misinformation called me back and put me in a room. She asked, "Is this just a follow-up appointment?" I told her I was here for the biopsy/removal of the wound issue. She hadn't known I was here for a procedure, so she left to go get some equipment to set up the room. She returned with vials and needles and sheets and stuff like that. Then she said, "There's three patients ahead of you, then Dr. Saturday will be in. Just take everything off and lay on the table."

I asked how long it would be. She told me, "Well, awhile. Like I said, there's three patients in front of you."
Since it honestly takes me about 15 seconds to take off my ostomy bag, I asked if I could wait to take my bag off. I just didn't see a need to strip down and lay on a table for 35 minutes with Squirt squirting everywhere! This is a new office, and I had visions of the brand new exam table, nice clean white tile floor and freshly painted light blue walls splattered with Squirt "effluent." I'm not really sure why she thought that would be a good idea! Thankfully, she agreed to let me wait.

Dr. Saturday came in with a huge grin. "Guess what?"

He recently went to a conference about IBD (Inflammatory Bowel Disease). One of the speakers was a dermatologist. They talked about the types of skin problems IBD patients can have. There's the Pyoderma gangrenosum (Google image at your own risk). Then there are these other weird skin and wound ulcers and issues that apparently look just like what I have by Squirt and had with my surgical wound from my surgery last summer (you know, the wound that took 9 months of intensive wound care with multiple treatment modalities to heal...). These ulcers are associated with Crohn's disease. Evidently, the worst thing you can do for these ulcers is surgery - it makes them worse or spread or something. The appropriate treatment is injection with steroids. He was very pleased to learn this information.

Thankfully, the ulcer thing has been looking BETTER! And when I pulled off my bag today, it looked even better than it had a few days ago! It looked so good that Dr. Saturday decided that he didn't even need to do anything to it right now! He said he was a little disappointed, because he had this new great plan for what to do with me, but he didn't get to carry it out. ;) If the wound does get worse again, though, he'll inject it with steroids.

Dr. Saturday told me that he thinks that I actually have Crohn's, not ulcerative colitis. Ya know, all the doctors have gone back and forth on the Crohn's vs. UC thing with me, but it was still a bit of a shock to hear. Dr. Saturday said that I've never really gotten better, even without my colon. I also have so many "extra-intestinal" manifestations, and all these weird issues that are more associated with Crohn's than colitis (abscesses, fistulas, these ulcers...). Anyways, he thinks it all adds up to Crohn's.

He thinks that the ulcer has improved over the past few weeks since I've been on a higher dose of steroids. I was supposed to start tapering back down to my normal dose of steroids over the next several weeks. Dr. Saturday told me that he wants me to taper much more slowly than JP Dr asked. He told me to call JP Dr and tell her that he now thinks I have Crohn's, and ask if it's okay if I taper more slowly in order to help the Crohn's wound/ulcer issue heal.

I called her, and she said, "I'M fine with you tapering more slowly, but it's your endocrine doctor who's won't like that." Endo Doc wants me to be on 1/3 of my current steroid dosage, and she is really not a fan of using steroids for my autoimmune issues. I think sometimes she forgets that there are times when steroids are the best choice for treating chronic autoimmune inflammatory conditions. And we've also proven that my body doesn't follow the normal rules, and so sometimes, for whatever reason, my body needs a hefty dose of steroids just to function normally.

Speaking of functioning... I have been, like, actually functioning again! After a few weeks of sleeping close to around the clock, I'm starting to have more energy and stamina, less shaking and dizziness... it's fantastic! I am still having a lot of trouble over the weekends from the Methotrexate shots, but otherwise, I'm doing a lot better overall! In fact, Tuesday was the best day I've had since before being in the hospital in May! I can feel my body starting to regain some strength. Praise God! I am SO thankful! I am starting to heal and finally feel like myself again.

Hannah ;)

Monday, September 10, 2012

Surgeon, Pain, & Steroid Updates

What is going on in there?
Thankfully, the CT scan didn't show any major issues - no abscesses! Yay!!!! Dr. Saturday did confirm that the pelvic pain and other symptoms I continue to experience are abnormal and concerning... but despite repeated testing, cultures, exams, empirical treatment with antibiotics and antifungal and anti everything meds, and even open abdominal surgery, Dr. Saturday, Dr. Professor, and the Urogyn Dr have all come up empty as far as a definite cause of or resolution for my symptoms. Dr. Saturday said he just has no idea where to go from here, but at least there isn't something that dramatically needs fixing, as far as they can see. A bit disquieting for all involved, but I guess that's medicine, sometimes.

What were VSL#1 and #2??
My tummy stayed rather upset for several days following the CT... I guess my system is just really incredibly hypersensitive to the contrast or something! Silly tummy. Also, since my surgery, I've been having to get up at night to empty my bag 2-4 times per night. I used to rarely get up at all, so this was quite a change. I thought this was due to losing a few more inches of intestine during my surgery, but Dr. Saturday thought this is more likely due to all the antibiotics and antifungal medication I was on this spring and summer. Since I'm having an upset tummy plus the nighttime issues, he wants me to do a course of the infamous VSL3 probiotics for a few weeks. 

Dr. Saturday ready for action
The weird growth in the wound around Squirt has returned. It's a finger-like projection just to the side of Squirt - it almost looks like a little tiny baby stoma. Dr. Saturday was very interested in and befuddled by the anomaly. He said it could be IBD on the skin, or an allergic reaction to whatever kind of stitch he used there, exacerbated by my body's autoimmune inflammatory reaction to... basically everything. Since it won't go away, and since he doesn't know what it is, he wants to follow the surgeon's mantra ("when in doubt, cut it out"). So... I'm having a little surgery in about 10 days. He wants to excise the little "finger" and surrounding wound area, and he will either stitch the area shut or let it heal from the inside out (words that send an involuntary chill down my spine - you may recall I had a surgery that was left to heal from the inside out, which resulted in 80 days on a WoundVAC and 9 months of an open wound). Thankfully, he told me that he could do this procedure in the office if I wasn't too squeamish. I'd do just about anything to avoid going to the hospital and getting put under, so I was glad to hear that.

I saw Jack Black (Dr. Pain) on Friday. It was a GOOD visit - honestly, my pain is the best controlled it's been since I started needing to see a pain doctor. Words are inadequate to express my gratitude and thankfulness for this! It is unbelievably good and happy to NOT be constantly trying to push down this ever-gnawing pain that's a hair's breadth away from breaking loose and becoming uncontrollable. Since spring of 2010, I've needed medicine to help me fall asleep and stay asleep through the pain. In the past weeks, I've been able to come completely off of this medication and have rarely woken from pain. I received the green light to start tapering off another anti-depressant pain med I've been on for several months - I don't really feel like it's done a thing for me, and I'm all about cutting unnecessary meds! Once I'm completely off of this med (which will take 6+ weeks), I also got permission to experiment with tapering to a lower dose on another scheduled pain medicine. I am very excited that God is causing my pain to decrease, and that I'm able to try to get off some more meds!

I love Google images! So random.
JP Dr, my rheumatologist, had me experiment with my steroids last week. I went up to double my normal dosage for three days, went to 1.5x normal for 3 days, then back to normal. Sure enough, I felt like a different person after a few days on the higher dosage. Instead of being unable to sit up for more than a few minutes due to dizziness, I could stand up and have a conversation! Instead of 15-16 hours of sleep, I could get by with 12 (Okay, I know that's still quite a lot of sleep, but hey, it's improvement)! The tremors in my hands, intense salt cravings, and sensation of racing heart decreased quite dramatically. It was great, and I enjoyed some of the best days I've had in weeks!

On the first day of being back on my normal dose, I noticed I was really shaky, and the following day was even worse. Since going up on the steroids helped, JP Dr decided that I should go back up to the double dosage again for a few weeks, then try to taper down again, but v-e-r-y slowly. She said she was very concerned with how I looked the last time I saw her (I may or may not have almost passed out in her office...). She said she's not sure if it's because of my adrenal issues, my POTS/dysautonomia issues, or an autoimmune flare-up (or a combination of all these things), but it's clear to her that I do need more steroids right now. So back up I go.

My feelings go back and forth... sometimes I'm frustrated and sad that I still spend most of my days in bed, that many days I lack the stamina to get dressed, much less leave the house or work a full-time job. Other times, I feel such excitement and happiness over improvements I see in my health - much less pain, or a day when I have more energy than usual and can get up and accomplish small tasks. It's just a reminder to me that contentment and joy are NOT factors of circumstances. They are a choice, an attitude. Through Christ, it's possible to be content in the most impossible situation (Philippians 4:10-13). I can't allow my emotions or my circumstances to dictate how I act or think or talk to others; rather, I must allow the love of Christ to control me. 

Hannah ;)

Wednesday, August 29, 2012

Squirt v 3.0 & A CT Scan

On Monday, I went to see Dr. Saturday. I've been going to see him every few weeks, but I realize I realize I haven't mentioned much about the main reason for these visits: Squirt v 3.0. Squirt is my ileostomy, and you may recall that Dr. Saturday revised Squirt during my last surgery.

Add caption
Long Background Story: Squirt v 2.0 was very low maintenance. I changed my bag only once a week to every 10 days. Sometimes I would wear the same bag for TWO weeks without any skin breakdown or issues! It was great! The problem was that Squirt v 2.0 had decided it would be fun for more of my intestines to see the world... over time, he started protruding out more and more, until he was about three inches long. This was a bit of an issue. I wear a two-piece appliance (one piece, the wafer is like a hole-punch reinforcer-shaped sticker that goes around Squirt to protect my skin from Squirt's output. The other piece is a bag that snaps to the wafer like tupperware, and collects Squirt's output), and so I sort of had to thread Squirt into the bag and make sure I didn't pinch Squirt when I snapped it on! Also, since he protruded so far, I felt like he was harder to conceal under clothes, although I'm probably the only person who noticed.

See the tupperware-type rim on my bag?
Here's a pic of my wafer
Anyways, due to the protrusion, Dr. Saturday revised Squirt during my surgery in May. I guess he didn't quite realize just how far Squirt stuck out and had quite the surprise when they took off my bag in the OR! They had trouble sterilizing my belly for surgery, since Squirt was protruding like a limp tongue. I had asked him to leave the diameter, shape, and location exactly the same, but bring Squirt in so that he protruded only one inch.

I woke up to a bit of a surprise... Dr. Saturday ignored my order, and made Squirt quite a bit smaller in diameter because he "thought I would like it better." Um, really?? Or maybe I actually meant what I said! Since he made it smaller, he had to stitch up the hole on my belly that was left to the side of Squirt. Of course, in typical Hannah fashion... the hole didn't heal. In fact, it became an open wound... all because of Dr. Saturday's decision. It's been a daily lesson in forgiveness as I must painfully burn the wound with chemicals a few times a week.

Squirt v 3.0 has proved to be very high maintenance. I've had my first leaks in almost two years. Since Squirt is now oval-shaped, he is one size up and down, and a different size side to side (there's a good third of an inch difference), which means that wafers no longer fit. This leads to leakage, skin breakdown (digestive juices on raw skin 24/7 = ouch), and added expense and hassle factor of needing to change the bag more often and use other supplies make things work better. Thankfully, I am beginning to see some improvement, and I haven't had a leak for a few weeks.

Unfortunately, the surgical wound has not shown any forward progress since surgery 3.5 months ago. To track the progress (or lack thereof), I have been instructed to photograph the wound! This has led to many a happy hour of contemplating what would happen if someone stole my camera or computer. Ooooh the pictures they would find! The ostomy nurses and Dr. Saturday suggested that I email them the pictures of the wound. They acted like getting stoma wound pictures in their inbox was a ho-hum, everyday experience. Oh, the life of a Colorectal Surgeon!

I had never explained all of this, because even when he's being a challenge, taking care of Squirt is just a normal part of my daily hygiene routine. I doubt you spend much time thinking about your personal care habits, much less writing about them!

ANYWAYS, Dr. Saturday wanted to look at the wound. I *think* it may be showing *some* progress. He seemed rather concerned that some of the pictures look like some weird IBD complication that can happen on your skin, but when I showed him the wound in the office, it looked improved from the recent chemical burn I'd administered. If it reverts to the weird IBD-looking stuff again, I'll have to get a biopsy to investigate what's going on.

I started having sharp pains in my pelvis in the area where I've had abscesses... also been having other symptoms that I had prior to my most recent surgery. Not good. The only way to really tell what's going on is to do a scan... so today, I had to get a CT scan. This is not as simple as it sounds. Since I'm deathly allergic to the IV dye, I have to be pretreated in advance with steroids and benadryl. And last time, I still had a small allergic reaction despite all the pre-meds, and had to get IV benadryl. I have to drink a special contrast (can't do barium: it's so thick that it causes me pain when it has to go through the tiny opening in Squirt). Today, it took 3 tries and 2 nurses to get the IV in. I made a handy list for the radiologist of Organs Hannah Is Missing. I now do this to help them save face - the last two imaging reports I've received noted some organs that are NOT present in my body as "difficult to visualize" (forgivable) or "normal-appearing" (um... probably not so forgivable). Anyways, despite the pre-meds, I still had some tingling and itchiness in my tongue and throat afterwards. I also had a terrible stomach ache and some wicked nausea that's still hanging on several hours later. They made me stay at the CT place for awhile to make sure I wasn't going into a full-blown reaction, and when I didn't, they sent me home. I've been chilling out since then, sleeping off the benadryl and trying to get my tummy back on board.

Hopefully Squirt's wound starts healing up soon. I'd appreciate prayers for that and for the CT results! I should hear back about the CT scan by the end of the week. It's always an exciting adventure with me! As Dr. Saturday said on Monday, "Your body just doesn't do anything the easy way, does it?" Couldn't agree more...


Sunday, August 26, 2012

Impossibly Stuck, Divinely Blessed

The Blame Game
I've continued to feel pretty crummy: completely exhausted, sleeping 15+ hours/day, unable to shower or leave the house most days. My joints and belly are causing pain, and I'm running fevers. The last week or so has been the latest round of visits to all my specialists. I hoped that we could sort out what was going on and help me to get a little more functional! First, I went to the Endo Doc, detailed in the last post. She said, "You look great from an adrenal standpoint. You are on more than enough steroids. You feel bad because your arthritis and POTS are out of control."

Next, I went to the Rheumatologist. JP Dr wanted to add in Cimzia or a different immunosuppressant. Since I are not sure that the arthritis is the cause of the fatigue and malaise, I thought it would be unwise to add another med into the mix at the moment. So, JP Dr said, "Well, it's partly arthritis, but mostly your adrenal insufficiency is out of control. You aren't on enough steroids. And since you're having such bad problems with fatigue, let's temporarily lower your methotrexate levels." This may cause my joints to flare more, but should help with the fatigue IF it's medication side-effect related.   Her assessment of the adrenal stuff was exactly the opposite of what Endo Doc had said... but I went ahead and increased my steroids a bit.

Note: this is NOT a picture of my doctor
Then I went to the neurologist, the POTS doctor, who I am convinced looks like a private investigator or something - he has this deep gaze and subtle smile. ;) He seems a bit out of place testing cranial nerves and charting; it's easier for me to picture him quietly tailing potential criminals. Dr. Spy asked me if I was following the numerous lifestyle modifications he suggested. I am, and I've also come off of a few meds that can worsen POTS... yet my fatigue, salt craving and heart racing issues are even worse. Dr. Spy said, "We can't get your POTS under any better control until you have completed my 3 month intensive workout program (50 minutes/day of cardio). And you are too sick from your POTS and other issues to start the program. So start off with doing some leg lifts in bed and work up to 50 minutes a day on cardio machines." I am not really sure of how one gets from being unable to get out of bed to completing his program... and he didn't seem to have many practical tips on how to accomplish this, either. He didn't even have me schedule a follow-up appointment, I suppose because there's really nothing else he can do.

So basically... I feel stuck in this health situation, and I don't really see a way out. I am very sick, and it seems that no one knows exactly what to make of it or how to help me. I go to my doctor appointments, take my medication, try to follow their recommendations about lifestyle modifications... and yet, I am not "better." Both Endo Doc and Dr. Spy spent the appointment telling me that they cannot really help me, and explaining why it's one of my other specialist's job to manage my diseases better. And JP Dr spent the appointment trying to manage my endocrine and autonomic nervous system meds and labs.

I did increase my steroids, per JP Dr's recommendation, and, for the first time since I came off the prednisone, I feel slightly more awake and "with it."So hopefully that will help me to be able to get up and around a little more. I am still spending more time asleep than awake, and more time in bed than out during the hours that I am awake. And this weekend, I did feel better on the decreased dose of methotrexate - less poison in the body = less nausea/migraine/fatigue/confusion.

It bothers me that there's no comma after "hard"
My day-to-day reality is hard. My illness is not fun. Even my doctors are at a loss to explain what is going on inside my body, or they may be able to explain what's wrong, but can't really "fix" it. It's something I never would have chosen, but God continually uses it to teach me about Himself. He uses it to change my "head knowledge" into "heart knowledge." For example, I know and believe that God saved my soul from death when I put my faith in Him, but through my illness, I watched Him save my body as well. Two years ago, I was hallucinating in terrible pain in the ICU after surgery to remove my J pouch. God brought me through those horrifically rough days, and He showed me a facet of His salvation in a tangible way that I wouldn't have experienced without my illness.

And I've always known that God promises to provide for my needs, and I know that there are many people who care about me and my family. But were it not for my illness, I never would have seen God dramatically provide for my medical bills nor witnessed the incredible outpouring of support from dozens of people (check out the Help4Hannah website if you'd like to see for yourself).

I don't know if I would have learned these lessons so vividly without the difficulties that God has brought into my life. Now when I speak of God's salvation and God's provision, they aren't simply theoretical attributes or far-off promises anymore. I, like doubting Thomas, have gotten to see first-hand that these things are real. Although you certainly DON'T need to experience miracles to believe that God's promises are true, the wonderful things that God has done in my life serve to deepen my faith and trust in Him. My love and thankfulness for Him are also deepened as I experience God's goodness in new ways every day.

So... if the price for seeing God's goodness "up close and personal" is that I have to experience feeling "stuck," facing a challenging day-to-day life here on earth... it's worth it. As Paul puts it in II Corinthians 4:17, "Momentary, light affliction is producing in us a weight of glory far beyond all comparison." I just have to remind myself that I am divinely blessed!

Hannah ;)

Tuesday, August 21, 2012

Multiple Choices

I went to see Endo Doc at the end of last week. She told me that I look great from an adrenal perspective - I'm on a rather high dose of hydrocortisone for a person of my size, but it seems to be working for me, so she's content to leave it as is. She is happy that I was able to switch over from Prednisone to hydrocortisone without having a major emergency. ;) I'm happy about that, too!
It was an "easy" appointment, but sometimes it's frustrating to feel so awful, then be told that you're doing great. I did have a few really good days last week, so I lived it up to the fullest on those days! Since Friday evening, however, I've barely gotten out of bed, and I've been feeling nauseated and having pelvic pain again, which is concerning. Something just isn't quite right.

I talked to the JP NP (Joint Practitioner [Rheumatology] Nurse Practitioner) on the phone today. I asked her one of those tricky multiple choice questions:

Hannah has the following symptoms: fatigue, joint, muscle, and pelvic pain, low-grade fevers, forgetfulness, tremors, heat intolerance, nausea, and joint warmth, stiffness and swelling. Are these symptoms due to:
a. an arthritis flare?
b. a POTS (dysautonomia) flare?
c. an adrenal issue?
d. another abscess?
e. more than one of the above?
JP NP decided that she couldn't answer this question by herself or over the phone, so she gave me a semi-emergency appointment to see the JP Dr tomorrow.
The million dollar question is: How do we determine which issues are causing my symptoms?

I don't know if JP Dr will have an answer for me out of this multiple choice, but hopefully she can narrow things down and point me in the right direction. I know that they really want me to start Cimzia, a biologic treatment, but I am hesitant to start those shots for a number of reasons. And while I believe that an arthritis flare is definitely a big factor in how I'm feeling, I think that there are multiple factors playing a role in how I'm feeling. So I'd hate to start some big-gun arthritis medication, and still feel awful because some other issue is responsible for my symptoms. 

I've been experimenting with a few of my meds, as there are multiple choices for potential culprits in the fatigue issue. So far, I haven't found a pill that's to blame, but I have been able to reduce the dosage and/or taper off some meds, so that's positive. I also am having a very tough time tolerating my weekly immunosuppressant shot. I "shoot up" on Friday nights, and from Saturday night through Sunday evening, I feel like something the dog dragged home. I didn't experience this severe a reaction when I was at a lower dose, and it seems that the "hangover" is more intense each week. The cough syrup trick unfortunately hasn't helped much, if at all, with the side effects. Maybe I should try menudo...

I truly hope that God will allow us to figure out something from our multiple choices, some sort of strategy that will help me to have a more stable and predictable level of health and functionality. Please pray for wisdom for the doctor to know what is causing my symptoms, and what to suggest! And please pray that I will have wisdom and peace as I ponder the multiple choices for treatment options. I tend to get frustrated at my doctors when I don't like the answers or choices they give me. Sometimes, the reality is that, on this side of heaven, there simply may not be really great answers for me. And that's not the doctors' fault. That's the result of living in a sinful, fallen world. Like Paul says in Romans 8:18-25, I may groan along with all of creation as I endure the sufferings of this present life, but the suffering I face here is nothing compared to the inheritance I have in Christ, my sure hope! With perseverance, I am waiting eagerly for my adoption as God's daughter, and for the redemption of my body! So please pray that, regardless of what choices I'm presented with at the doctor, I will choose to have a God-honoring attitude.

I am completely amazed at God's incredible provision and goodness to me! If you haven't already seen it, please check out Help4Hannah, a website set up by my dear friend Dennis!

Hannah ;)

Tuesday, August 14, 2012

Help 4 Hannah!

The past few weeks have been pretty rough. I've run a low-grade fever constantly, and I've been having quite a bit of pain in my joints and muscles. I am very weak and shaky, so I've been spending most of my days in bed. I've been sleeping like a baby - in quantity, not quality, as I'm still so tired. Most nights, I sleep at least 10 or 11 hours, and I also have to get in another 2-4 hours of sleep during the day in the form of naps! While it's frustrating to be so tired all the time, I am thankful. Just a few months ago, I was in so much pain that I was not able to fall asleep or stay asleep, causing me to very nearly lost my grip on reality. So I'd much rather be sleeping too much than not sleeping at all! I've been able to reduce my dosage on the med I take for sleep.

I've been fever-free since Sunday, and my joints are improving. I managed to hold off on taking more steroids, however, and I *hope* that I'm starting to pull out of this flare! I tried the anti-inflammatory meds for about a week, but they started making my stomach really upset, so I quit. I'm hoping that I can stay off the steroids (my face is already starting to deflate, thank goodness - I look slightly less like a chipmunk!) and avoid adding a biologic treatment into the mix.

I also have struggled with my attitude. It can be depressing to be sick in bed. Over the last three weeks, I can count on one hand the number of times I've left the house. I've simply been too exhausted to get dressed most days, much less to drive myself anywhere or do anything. This makes me feel lazy and worthless because I'm not accomplishing anything. ThenI  feel selfish because all I do is lay around. Then I think about how selfish I am, which means I'm thinking more about myself... which is selfish! So it's a vicious cycle! I need to keep repeating to myself: It's not about ME. It's not about me. It's about God, and His glory. Even if I'm not really sure how God is glorified by me sleeping away most of my days and curled up in bed, too tired to even read when I am awake... it's where He has me right now, and I need to have the right attitude and honor Him with my attitude, with the way I treat the people who are serving me, in praying for others...

Thankfully, however, just as I was starting to feel very sad, God provided amazing encouragement in incredible way. He is so wonderful to do provide huge blessings at exactly the right time.

One of these ways is that my friend Dennis created Help 4 Hannah, a website to help with my medical expenses - what a blessing! Feel free to check it out! I have received an overwhelming amount of support and it's been insane to see the generosity and care of so many wonderful people!!!! It is unbelievable! I sit in jaw-dropped amazement at God's provision through this website. Feel free to check it out!

Hannah ;)

Friday, August 3, 2012

. . . And An Olympic Flare

I was so optimistic and excited and hopeful about being off of prednisone!

And then, Sunday afternoon hit.

And since then, I've spent about 12 hours being awake. ;)

I have been sleeping over 16 hours a day most days. I feel like I got hit by a truck! My joints got all stiff and started hurting like nobody's business - the worst pain I've had since coming home from the hospital. And I've been running a constant fever. *sigh*

At first, I thought it was the usual reaction I get when I taper down to a lower level of steroids... but by Wednesday afternoon, I realized that I am flaring. Without the prednisone suppressing my body's inflammation, my body launched another attack against itself. And apparently, I've really upset myself, as the attack feels rather vicious.

Stupid body.

I talked to the JP NP... we discussed my options. She wants me to start Cimzia, a biologic medication.

A huge incentive for having my colon removed was that this "curative" procedure would allow me to get off all my UC medication, including the biologic Remicade treatments, as I would no longer have colitis or arthritis. Unfortunately, less than 4 months after surgery, Dr. A told me that I needed a biologic medication to control my pouchitis - the colitis inflammation coming back in my J pouch. My arthritis returned as well. A few months later, I started injecting myself with Humira, another biologic treatment. As a last resort, Dr. A removed my J pouch, which he strongly hoped (but did not promise) would cure me of my autoimmune ailments. Alas... it did not. So here I am today.

I was not ready to make this sort of decision over the phone. Biologic treatments are not benign, and though they are highly effective for many people, they don't have a great track record with my body. Also, I wouldn't be replacing my methotrexate (immunosuppressant shot) with Cimzia. I'd just be stacking up meds, and right now my goal is to get OFF medication, not add more!

But really, my goal is to get functional again. To get to the point where I can leave the house more than once or twice a week, only to return home so exhausted that I go to bed for the next few days. To be able to walk without limping. To have less pain and stiffness. And if Cimzia could do that, even for a few months, might that not be worth it?

I don't know. In the meantime, JP NP suggested that I go back on steroids for a month or so.... more news I did NOT want to hear. She has no idea how to do steroids for a patient with adrenal insufficiency, so she wanted my Endo Doc to decide how much steroids and for how long. Um, my Endo Doc is great, but she has NO idea how to treat an arthritis flare! I finally nailed down what the JP NP would "normally" do for an arthritis flare, so now I can ask the Endo Doc for guidance on how to manage the steroids. I am still just hoping against hope that the flare will stop without needing steroids.

JP NP did agree to my proposed plan: that before jumping to steroids, I'd do a few days of my prescription-strength NSAIDs (Non-Steroidal Anti-Inflammatory Drug - the class of drugs like ibuprofen and naproxen; drugs that have an anti-inflammatory effect, but are NOT steroids), but she didn't think that would be sufficient to get this flare under control.

Most of the time, God has been really gracious to grant me a pretty good outlook and attitude about living with this illness and everything that goes along with it. Honestly, though, this week has been really hard, and my attitude has not been great all the time. I just want to be "all done" with this trial and wake up and be better... preferably with an intact GI tract and no scars or bags or painful memories. I want to have learned everything that God wants to teach me. I found myself asking Him what exactly He wants me to do so this can stop.

I know all the good things I could list that have come out of my illness, I know all the millions of blessings God has generously granted me through this trial... and I remember those things, and thank God for them!

This week, I've just recognized that although I've gained a lot, I've also suffered very great losses, from my health to my dreams. For as many happy blessings as I've received, I've also gone through many unbelievably hard things. I thank God daily, but I also daily face very real physical and emotional and psychological pain. And I look forward to and long for heaven, but many days here are almost insurmountably difficult. It's hard. It's usually not fun. And it hurts a lot. Some days, it's agonizing.

I'm learning that it's okay to acknowledge all this sometimes. I think of the children of Israel crying out to God in the midst of their bondage to Egypt, and God turning His ear to them. Even Jesus wept in the garden. The Psalmists describe in flowery detail the things they've lost and suffered and gone through. Paul wrote lists of the hardships he'd endured (I do note that he did NOT make this list so he could whine about how bad he'd had it, but the fact that he was able to make that list indicates to me that it was present in his mind at least occasionally). I think the key is to end where Jesus did: If it's possible, let this cup pass from Me, but not My will, but Yours be done.

It's okay, and even good, to cry out to God in the midst of hardship and trial, to tell Him it's hard, and to ask for relief and deliverance, but it's most important to be in submission to the will of the One who did not spare His own Son, but delivered Him up for us all. How will He not also, along with Him graciously give us all things? (Rom 8:32)

Hannah ;)

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 ;)