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Thursday, May 27, 2010

Takedown: Postponed Until Further Notice

Dr A and I reunited again... bottom line is that any type of surgery is a no-go until I get to a much lower dosage of steroids. Dr A wants my body in top condition going into surgery, and let's face it, I'm not there yet. If all goes well with the steroid taper (which... honestly... it's been a pretty bumpy road so far), I will reach the required dosage in several months.

The reasoning for this is the high risk of complications from this surgery if you're on steroids. Dr A's main fear is that the intestine he sews together will split due my long-term steroid use (which causes thinning of the tissue and poor healing) and the inflammation in my pouch (inflamed tissue tends to NOT heal well, either). This would result in sepsis, and while death is gain for me, Dr A has his stats to think of. ;)

Unfortunately, even a small surgery to fix Squirt is not an option at this point, either, for those same reasons. Also, since I already have problems in my intestines from scar tissue, Dr A would really prefer to NOT do that additional surgery to fix Squirt, which will cause even more scar tissue. He did provide hope that things with the pouch might actually improve once I'm reconnected. And he said that we are nowhere near having to consider taking out the J pouch. So that's truly excellent news!

So, while this waiting to do surgery thing just prolongs my life kinda being "on hold," I have to admit I feel highly relieved to NOT have to go through another surgery this summer. I am a little bummed to have to keep dealing with Squirt prolapsing, but even that is still much, much better than dealing with UC. I'm truly thankful that God has made His will about doing surgery very clear right now - makes it easy for me to obey. ;)

I'd really appreciate continued prayers for relief from pain. The increased pain meds are helping sometimes, so I've had some good times, but I'm still having pretty severe pain, especially at night. So I'm not sleeping much, which is rough. I'm trying really hard to just lean on God and pray for others and think on verses I've memorized and stuff. I saw Dr Pain today, who encouraged my drug habits, haha, and also gave me a shot of toradol (my faaaaavorite!!! Yay. Now it doesn't hurt to breathe!), so I left feeling a bit better. Have I mentioned that he's awesome? He's awesome. I'm going to try this "rescue med" for when I have really bad days. It's basically a super duper strong anti-inflammatory. It can be toxic and can cause GI bleeding (which I obviously already have, so I have to be careful). To avoid the side effects but hopefully give me some relief, I'm allowed to take it once or twice a week - I get to choose when - to help me through the worst days when the narcotics aren't helping a ton. He also gave me some ideas for how to take my sleeping stuff -increasing the dosage and changing the timing. Hopefully these changes will add up to feeling and sleeping better!

I am so thankful today for my amazing siblings. ;) Yesterday was a HORRIBLE day with pain, but Joseph kept me busy watching silly YouTube videos, Sarah dragged me out of bed and took me out to dinner and ice cream, and Andrew gave me this awesome back rub that made me miraculously SLEEP last night. Goooo team! ;) Love them so much.

Hannah ;)

Sunday, May 23, 2010

"Delight yourself in the Lord..."

The Take Steps Walk was a great success - a big thank you to all who showed their support! ;) I got to meet Bryan, founder of riseandconquer.org, who just got out of the hospital from surgery #2! Keep him in your prayers as he recovers! Even my GI Dr was at the walk! Which brought up an interesting dilemma... what do you say to your GI Dr in casual conversation? I mean, we talk a lot and stuff... but all our conversations center on ... unpleasant topics. I discussed the weather with him today. ;/

My pain has been getting more under control since upping the meds, praise God! Unfortunately... as seems to be the pattern a few days after my pain gets worse... I started dumping again on Friday night and feeling dizzy. I've been off and on adrenal crashing all weekend. So I doubled my steroids, which also happens to do wonders for the stiffness in my joints. I finally slept all morning on Sunday, which felt amazing, and the adrenal stuff calmed down enough for me to walk the 5K! Thanks to God (and probably the double dose of steroids), my joints made it the whole way and I felt pretty good!

As I'm tapering off the meds for Twitchy, the pouchitis is definitely rearing its ugly head. So I think we need to give Humira more time to kick in before tapering off.

This week, I meet with Dr A (my surgeon). I have some serious questions for him. I want to know honestly what they think about my possibility of a good outcome from the takedown surgery (getting rid of Squirt and hooking me up to the J pouch). Please pray for wisdom for me and Dr A and all my doctors - hopefully it will be a clarifying appointment.

In addition to Bryan, please pray for Julia! Julia is having a bout of pouchitis, which is a little scary for her and her family... please pray that it quickly goes away and never comes back!

I moved home with my family, and I'm not doing anything this summer - no work, no school - nothing! God is teaching me to be still. Which is something I have never done. I really believe that as I rest, things are going to get better. This is all just a bump in the road, and eventually we will close this chapter and I'll be able to pursue the dreams God has given me. That being said, God is so clearly showing me that His will right now is for me to wait and rest. I was not so happy with that at first... moving back in with your parents after 5 years of being on your own and not working were NOT in my plan. Thankfully, God is in control of guiding my steps, and this is where He's guiding right now! And as I've obeyed, He changes my heart a little more each day and gives me more joy and contentment with where He has me. It reminds me of Psalm 37:4, one of my favorite verses - "Delight yourself in the Lord, and He will give you the desires of your heart." Obviously God isn't the tooth fairy or a genie, and He doesn't always give us everything we ask for or want. But as I delight myself in Him and seek Him, He CHANGES the desires of my heart to line up with His will and what He wants. I've seen Him do that in my life over the last few weeks, which is such a blessing!

Hannah ;)

Friday, May 21, 2010

Updates and Prayer Requests


***If you haven't read Monday's post yet, please scroll down and take a look and consider joining me for the Take Steps walk on Sunday!! Thanks so much!***

Unfortunately... I've been having a LOT more pain since Monday night. Hurts incredibly bad even to breathe (the Rheumatologist checked that out last week. Apparently even the muscle walls in my chest and the cartilage in my ribs and sternum is all inflamed. Yuck. But at least it's not my actual lungs that are inflamed! Could be worse!). Anyways, I talked to my pusher... I mean, the Pain Dr... yesterday. We've upped my meds again to see if I can get the pain under control again and be able to sleep. He was just like... "I'm really, really sorry... take more drugs and hope the weather stops changing." ;) I'd really appreciate prayers for relief/endurance. I am just pretty miserable. For the record... feeling stoned is only fun if you feel stoned and NOT in pain. Otherwise, it's not worth it, haha!

I saw the Endo Dr again today. She is smart, nice, listens, and I really like her - a tremendous improvement over the Endo NP and Dr I was seeing!! Over the past few weeks, we've had to increase my steroid dosage several times because of the adrenal crisis episodes. So now I slowly (over months) have to try to come back down to a "physiologic level" (the level my body should be making - right now I'm on about twice that much) again. THEN, if that goes well, we can do testing to see if I can start trying to very slowly taper completely off. I can't even imagine how long this is going to take... she is talking up to three years, ugh.

A big concern is keeping me more stable. We created a plan for if/when stuff goes bad: when I dump, I am supposed to immediately double my steroid dosage. This is so that hopefully I will absorb enough steroids to prevent me from hitting another crisis. She wants to be more proactive about keeping me hydrated and keeping my heart rate normal. So if I can tell I'm headed in a bad way, I'm supposed to call her right away. She's made arrangements for me to be able to come in and get an IV in the infusion center in the clinic. That way, I can get prompt treatment and avoid hitting the full blown adrenal crisis and extreme dehydration.

Finally, she is emailing all my specialists so they can put their heads together on what my issues are, what's causing them, and what is the best way to manage everything. I think this is a very positive move, and hopefully will result in some answers and less fragmented care.

I did round #2 of Humira, my superwoman shots! Only side effects are that I am turing into a superhero and that I had to clear off a shelf for the sharps container. ;P The shots burn a bit and I get a little headache afterwards, but it's nothin'! I really honestly think they are already helping! SuperPouch (Twitchy's alter-ego) is still uncomfortable, but I'll take a little discomfort over constant pain and bleeding! My joints are also less stiff, so hopefully soon the pain will decrease as well. Pray that Humira kicks in and puts the pouchitis and arthritis and inflammation in its place!

Since Humira is supposed to be taking effect, I'm coming off the meds that have kept the pouchitis under control since March. Please pray that I will NOT flare as I taper off these meds!

Also, could I ask you to please pray for my family? My grandma has Alzheimer's and is having a very rough time right now - she is extremely upset and agitated... to the degree that my mom and I had to take her to the hospital on Wednesday. She'll be there for several days as they try to find the right combo of meds to calm her down. Pray that they can find something that will allow her to be safe to herself and others without being zombified.

Thanks for your prayers! I truly appreciate them!

Hannah ;)

Monday, May 17, 2010

Shameless Plug

Hi everybody,

First, an update... I have happy news (I know, it's been a while since I've posted happy news... so sorry)! I've been having better days lately. Whether the IV roids helped (they sure make my face look chubby...) or the Humira is kicking in, I don't know, but I'm excited! My stomach is NOT HURTING! And I'm hungry! And when I eat and drink, my stomach is WORKING! Also, been off nausea meds for four days! Twitchy is doing about the same, but not getting worse, even though I'm tapering off the meds I've been taking for him. My joints are getting less stiff! I slept through the night last night for the first time in... I don't remember how long! I'm still having to take a TON of pain meds... but they are, for the most part, keeping my pain at a level that's tolerable! I continue to struggle with Squirt and with getting shaky and having my heart race, but overall, I no longer feel like death, which is the BEST FEELING EVER! I also have had a ton of encouragement from a lot of different folks, which means so very much to me - so thank you all!!

Today I have a special request (okay, a shameless plug)...

A few weeks ago, I spoke with Bryan Kervin, a TCU alum who has UC. He played baseball in the Toronto Blue Jays program before becoming severely ill with UC. After an emergency colectomy, he suffered many complications that nearly cost his life, and he's currently chilling in the hospital recovering from a second surgery. He began a foundation called Rise and Conquer, which is dedicated to helping others who have IBD, a group of diseases that incorporates UC and Crohn's.

I asked him how I could help, and Bryan challenged me to raise $500 for the CCFA through Take Steps, a 5K walk/run on May 23 to raise money for CCFA, the Crohn's and Colitis Foundation of America. This is a free event, but it's encouraged to donate $20 - all the profits go towards both research to find better treatments for Crohn's and UC as well as towards scholarships to send kids with these diseases to camp.

I'm gonna get out there on my arthritic joints and limp a 5K for this worthy cause. If you're in the Dallas area, I would be thrilled if you would show your support and join me! If you're not able to come, you can make a donation in my name through the link on the Rise and Conquer or Take Steps website! I know it's short notice, but would you please consider if this is a way God might use you to make a difference? It would mean a lot to me to make something good come out of this and help others who are living with these diseases.

Here's a link to Bryan's website - click on the "Take Steps" logo on the bottom right for event details, to register or to donate. You can join the Rise and Conquer team there online.

http://www.riseandconquer.org/

And... here's a note from Bryan:

"Hello Everyone,

Rise and Conquer is a foundation I started to help towards the research of Crohn's and Colitis.My goal is to also create scholarships for Camp Oasis (a Crohns and Colitis Camp for ages 7-17) to children that need financial help. This camp is put on by the Crohn's and Colitis Foundation of America and is $1200-1500 per kid.

Our first event for our foundation will be on May 23, 2010. We will be forming a team called Rise and Conquer for the Take Steps walk put on by CCFA. We are asking you to join our team and help conquer Crohn's and Colitis! The 5k walk/run will be at Reverchon Park in Dallas, Texas at 5PM. We will be accepting donations for CCFA and the Oasis camp and you can buy a team shirt for $25.00. (it is a black dri- fit shirt with the rise and conquer logo on it, very sharp). Or you can just show up and enjoy the festivities to help support the fight against Crohns and Colitis. Our goal is to raise at least $2000.00 at this event for CCFA.

Also you can check out our website at: www.riseandconquer.org for more events and information that we will be doing to RISE up and CONQUER Crohns Disease and Ulcerative Colitis. If you cant make this event than there are many more events on our website. Hope to find this e-mail doing you well and have a blessed day!

Bryan Kervin
CEO- Rise and Conquer
kervin.riseandconquer@gmail.com
(817) 480-6096

Please make checks out to: Rise and Conquer or go to www.riseandconquer.org for the link to donate online

You can bring the checks to the walk or mail to Bryan Kervin 1416 Clearwater Ct Graoevine Texas 76051"

Thanks so much for your support, and please let me know if you are interested in participating or donating!

And thanks for reading that long commercial! ;)

Hannah ;)

Wednesday, May 12, 2010

Yeah... Another ER Visit

Well... Monday night into Tuesday was spent at the ER. Oops.

Monday morning, the Endocrine people called me to see how I was doing. At the time, I was okay, but considering Friday, we upped my steroids again to make sure I stayed that way. If I started dumping or I got dehydrated with my heart started racing again, I was supposed to get IV fluids.

So... I've been having a terrible time with Squirt of late. - GROSS ALERT (feel free to skip this paragraph)- Off and on since March, Squirt has been prolapsing - basically my intestines come several inches out of my stomach. If I lay down, I can push them back in, but they pop right back out. It's a most uncomfortable feeling, and requires surgery to fix. My GI Dr actually got freaked out a little by it, haha. The things I put up with... ;) I was really hoping to get it fixed this month, but I don't think that's going to happen, boo. Anyways, the prolapsing, in addition to not feeling great, makes it so the bags don't stick like they are supposed to, so I have to change the bag all the time. Since they don't stick well, the skin around Squirt gets raw. It's very uncomfortable and frustrating. I try to not whine about Squirt because, really, having even an obnoxious ileostomy is better than when I had to deal with my worthless colon! But sometimes, it's a lot to handle on top of everything.

Monday was one of those days. The bag started leaking and my body started dumping. Great. It was not fun. By the time I got everything under control, it was 5:00 and I was feeling like I did on Thursday and Friday - shaky, heart racing, dehydrated, stomach really upset and hurting. All I wanted to do was study for that silly final I was supposed to take on Friday but missed because I was stuck in the bathroom dry heaving and bleeding... I was supposed to re-make it up on Tuesday morning. I knew I would be in trouble without some IV fluids. So my roomie took me to the ER and I got fluids and IV steroids and pain meds and nausea meds and heart monitors and all kinds of fun things. They wanted to keep me since I couldn't stop shaking, but I told them I had a final in the morning. They just kinda looked at me funny and kept hanging bag after bag of fluids. By bag #4 early Tuesday morning, I stopped shaking, my heart settled down, and they agreed to let me out.

My professor was a little surprised to see me a few hours later... I had asked my roomie to email him that I was in the hospital, but would be at his office if they let me go home. He kept looking at me and asking, "Um, do you feel okay?" I was like, "HiIjusthadIVsteroidsandtoradolandacouplevicodinandIthinkIcandoanythingrightnow!" I took the test. It was definitely not my best, but considering the circumstances, I think I can be happy coming out of the class with a less-than excellent grade. I just wanted so badly to finish SOMETHING.

I'm doing okay still. My face looks pretty swollen (from the roids, I think). But at least that means I'm hanging onto fluids, yay! Hopefully the extra steroids were all I needed to jump-start my system. My pain levels have also been more manageable (probably also from the extra roids. I'll take it!), which is really great! I'm still hurting a lot, but it's at a level I can deal with most of the time. And my stomach is settling down, although Twitchy is getting more and more unhappy again. I'm just frustrated that we still can't figure out what is going on. And that I keep having to bump up the steroids. I'm supposed to be trying to get OFF them, not taking more of them... but hey, at this point, if they're making me feel better, I'll take them!

Hannah ;)

Sunday, May 9, 2010

News...

Well, I've been busy since my last post... so this is pretty long...

I started Humira on Wednesday! Four stab wounds later... ;) It was fine. The shots are like an EpiPen, so they are super easy to give yourself. They didn't really make me feel bad or anything, like the Remicade infusions did. I had a headache from Wednesday to Saturday, but that's not uncommon for me, so I don't even know if I can blame that on Humira! I will give myself the shots every two weeks, and should notice an improvement in 2-12 weeks.

The GI appointment was not really what I expected, I guess. I thought that this was gonna be the green light to do surgery #2, but GI Dr wants to give Humira a 6 week trial first. After 6 weeks, if I have zero inflammation in the J pouch, we can do surgery #2. He is kinda reluctant to do any kind of surgery because of my adrenal issues. The fact that I'm on steroids will, like my first surgery, complicate my healing and increase the risk of infections and troubles and stuff. Also, I will actually need extra IV roids during surgery and recovery, or my body will go into shock! So that's an issue.

After surgery, I will stay on Humira, and we'll see what happens. Best case scenario is that Humira will work to keep the pouchitis in remission. Then, eventually, they will try to taper me off Humira. Or, if it's as helpful for my joints as we're hopeful it will be, I can stay on it. The worst case scenario would be that the pouchitis flares up again despite this last-resort treatment. At that point, the J pouch will need to be removed.

If Humira does NOT work after 6 weeks, we will try it for an additional 6 weeks. If the inflammation is gone after 12 weeks, we'll do surgery #2. If it's not gone by then, I will need surgery to have the J pouch removed and have an ileostomy forever.

GI Dr wasn't super helpful with the dumping/nausea issues I've been having. He thinks (and he's probably right) that they're probably related to the number of meds I'm taking, but there's really nothing that can be done about that right now. Also, we're reaching the realization that the joint and adrenal stuff does not go away even when the GI stuff improves. That's kind of depressing.

I blacked out on Thursday... oops. I've still been dumping really bad. I drank liters of fluids and stuff to try to rehydrate... but I am just not absorbing ANYTHING, so it's not doing me any good to take in things by mouth.

Friday, I had a final at 9. I woke up in pain at 5, and no more sleep was gonna happen, so I figured, this is good, now I will just try to study. Around 8, Twitchy decided to start bleeding out and hurting and my stomach decided that nothing was going to stay in it. I pulled out my last hoarded Zofran (crazy expensive miracle nausea med that dissolves in your mouth) and even THAT didn't help. I spent the morning in the fetal position in the bathroom... so I didn't make it to my test. I am pretty disappointed that I bailed on my professor like half an hour before I was supposed to be there. I had to take my other nausea med (it knocks me out... which was honestly JUST fine with me at that point), because I HAVE to take all my steroids in the morning, and keep them in, or my body will literally go into shock. Thankfully, the meds kicked in, I had a small nap and was able to get my 'roids in. Since I've been dumping everything for the last several days, and was dehydrated to the point of blacking out on Thursday, you can imagine that I was not feeling very well by this point. My stomach was upset and really crampy, Twitchy was very raw and bleeding and unhappy, my pain was through the roof, heart was racing, seeing spots... I called the endocrine people. They decided I need to increase my steroid dosage. It's frustrating because I'm trying so hard to get OFF the steroids, but we keep having to increase the dosage just to keep me stable.

Anyways, I was still feeling pretty horrible. I called TCU Dr, who said it was his office for IV fluids or hospital. He suggested hospital pretty strongly, just because they can give me IV pain meds, too. I almost felt that bad, but not quite. I just HATE hospitals and the rigmarole of going to the ER. So I went in to TCU Dr, and he was like, "Whoa, you look pretty awful." He very kindly gave me IV fluids in the office, staying until 5:30 on Friday to make sure I stabilized and was okay. I was really dry, so it was very tough to even get a decent IV in. Thankfully, I perked up after a bit! My heart settled down for the first time since last Thursday, and my brain started feeling more normal - not "fuzzy." Since getting fluids was so helpful, the topic of getting a PICC line so I can get fluids more easily came up, but I still feel like we need to find the source of the fluid balance problems instead of hooking me to an IV pole all the time. But I have to admit I felt about 300% better after the fluids. The good feeling lasted until this morning, when I started feeling shaky and my heart started going nuts again. *Sigh*

My pain levels have been a little bit better. I'm still really hurting, but most of the time, it's at a level I can deal with without being completely incapacitated, and the pain meds (which I'm taking round the clock) are helping more than they were, which is nice. But it's honestly still pretty bad.

This weekend, Steph was in the area, so I got to see her! Yay! Stephanie had the J pouch surgeries in November and February. Her surgery outcome leaves something to be desired... please keep her in your prayers! Life is definitely livable for her, but she is still sick and in pain more often than expected, which is just no fun at all, and quite discouraging.

I'd appreciate prayers for wisdom and guidance for me and the doctors. My life has been on hold for quite a while. I was supposed to graduate on Saturday. But I didn't. I thought that I'd be having surgery in a week or two, and now instead it's in 6 or 12 weeks. I need to figure out what I'm going to do for health insurance after August... but how can I get a job when a). I'm this sick and b). I'm going to have surgery in 6-12 weeks? How do I go about living life when I can't even predict if I'm going to be able to make it out of bed in the morning, if I'm going to be in too much pain to function or too dizzy to stand up or too sick to leave the house? I truly say these things without bitterness in my heart... I just honestly don't know what to do.

It makes me think of James 4:13-14: "Come now, you who say, "Today or tomorrow we will go to such and such a city, and spend a year there and engage in business and make a profit." Yet you do not know what your life will be like tomorrow. You are just a vapor that appears for a little while, and then vanishes away." It also makes me think of Matthew 6: "Look at the birds of the air, that they do not sow, neither do they reap, nor gather into barns, but your heavenly Father feeds them. Are you not worth much more than they?... Do not be anxious then... for your heavenly Father knows that you need all these things. But seek first His kingdom and His righteousness; and all these things shall be added to you."

So that's my answer - I just need to keep seeking God, and He will provide and guide!! I've seen Him do that amazingly. I wasn't sure that Humira was something I should do. My parents and I prayed and decided that God would lead "yes" if we somehow got Humira for free. Otherwise, it was a no-go. Humira costs upwards of $50,000 per year. Thanks to God's incredible provision through the pharmaceutical company that makes Humira, I am receiving it at NO COST until August. That's right. That's like someone giving me a down payment for a house. That's unbelievable. God led and provided with such amazing clarity. If God can do that, how can I not trust Him to continue to direct me in the way that will bring Him the most glory?

Hannah ;)

Tuesday, May 4, 2010

Full Circle

Scratching the stiff white collar on my lab coat, uncomfortable in my dress slacks and blouse, I clipped on the badge that identified me as "Student Nurse." I started going through patient charts, selecting the patients I'd care for during the next 7a - 7p shift. X45: COPD. I closed the chart. I'd had so many COPD'ers this semester that I could recite their stories in my sleep. "No one told me smoking would do this to me. Now that I'm sick, I might as well smoke til I die. Dang it, when can I get outta here so I can get a smoke?!" No, thanks. X48: Decubitus ulcer. These patients weren't usually really sick, but they sure could be demanding. "Can't I have a Coke? I need a straw. Can you find another pillow so I can prop my legs? Can you ask my doctor if..." I didn't mind them, but I didn't learn a lot of medicine from them. I put the chart in the "maybe" pile. X47: Probable discharge in the am. Nope. X43: Scheduled for procedures in the am. Uh uh. My choices were few. Sighing, I grabbed the next one. X42: Crohn's Disease, admit for dehydration and adverse reaction to Humira. I dropped the chart like a hot coal. I didn't want this patient.

I'd been diagnosed with UC, sister disease to Crohn's, just a few months earlier. I was still trying to figure out what it meant to have UC and what life was gonna look like from here on out. No way could I be objective and take care of this patient...

Unfortunately, my fellow nursing students (who, unlike me, didn't have diving practice and could come to the hospital to choose patients whenever they wanted to) had beat me to the floor and snapped up pretty much all the other "good" patients. I didn't really have a choice, so I jotted down X48's meds and labs, then trepidatiously began perusing the Crohn's patient's chart. Her gastro doc had written a consult or admit note or something. One sentence from the note stands out in my mind: "I do not feel that anything I have tried has helped Ms. X at all." I stopped reading, and my mind reeled. No, people don't stay sick with this stuff. They get on meds and go into remission. If the traditional meds didn't work, the new big gun meds like Remicade and Humira worked like a charm.

Yet here was this lady, who'd been on Prednisone for 30 years, tried countless surgeries, immunosuppressants, and diets, without success or remission. She was on disability. She'd tried Humira and wound up in her doctor's office with a reaction and got sent to the ER, and now, here she was.

As I cared for Ms. X (I've omitted and changed identifying details to protect her privacy), I brought her pain and nausea meds right on time, yet she kept rating her pain and nausea at an 8/10. I felt sick. I talked to my nurse, "She's still really hurting and sick... can't we do anything else?" The nurse sadly shook her head and said, "Honey, I'm afraid she's just one of those chronic pain people. Don't know that there's much anyone can do for her." I was terrified, selfishly, not just for Ms. X's suffering... but for my own. I had the uncanny feeling that this could be my future. That it could be me lying there in that bed, getting sick every few minutes, in constant pain that no medicine could touch.

As time went by, Ms. X faded into memory as I learned to live life with UC. Then one day, I saw her face as TCU Dr. described to me how I feel: "So basically, you're constantly nauseated, sick, exhausted, stomach hurts, bleeding all the time, and your joints hurt so much you can't sleep." Strangely, in many ways, my life is seeming to parallel Ms. X's. And now I'm starting Humira, the medicine that sent her to the hospital with a reaction.

What does all this mean? I don't know. But I think I've come full circle.

Hannah ;)

Monday, May 3, 2010

In Which I Become a Super Hero


So... back when I was on Remicade, my friends nicknamed me Mighty Mouse. You see, Remicade is a chimeric molecule - it's engineered from part human protein, part mouse protein. So yup, I got infused with mouse proteins every so often.



Now, I got some exciting news last week. I got approved to receive Humira, at no charge, through August! Praise God! I'll get the shots shipped in tomorrow! If GI Dr still wants to go forward with Humira (even though Twitchy is doing better, it is still a good choice, and would also be great for my joints, too), then I can start as soon as Wednesday!

Humira is made so that it is exactly like a human antibody, right down to the last amino acid - nothing mouse about it. Therefore, I'm gonna be shootin' up some awesome (human) proteins!

So, I'm gonna be... dun duh dunnnnnnn... Superwoman!!!!!!! And we've all met Twitchy... the obnoxious alter-ego of the soon-to-be unveiled... SuperPouch!

Yay Humira. Here's to getting better.

Hannah ;)

Saturday, May 1, 2010

Hanging In There...

Things are still rough from the pain perspective. I met with the Pain Dr on Thursday, and we decided to come off the pain patch this weekend. I just don't think it's helping me much, they are expensive, and I feel very drugged (but still in a lot of pain) the first day on it, which I don't enjoy. So we're going to just do pills and add a sleep aid. My thought is that my ability to deal with the pain during the day will be better if I can sleep through the pain for the night and get a reasonable amount of rest. Unfortunately, Thursday afternoon and on was pretty horrendous - worse than either time I went to the ER the other week. Things have been a little better since Friday, but still not good. I'm trying the sleep medicine, and it's helping, but I think it's making me groggy throughout the day. But for now, at least, it's totally worth it to be able to get a break and sleep! I'm off the patch as of today, and I'm still really hurting, but it's not really any worse without the patch, so I think it was a good choice to come off it.

Dr. Pain has some very interesting theories about how all my symptoms fit together and exacerbate each other. It's a little complicated, but it makes sense to me. Basically, he told me that the adrenal insufficiency has made it so my body can't regulate my autonomic nervous system. The ANS controls heart rate, digestion, breathing, temperature regulation, etc. - all the subconscious stuff. When I've had severe pain or stress or fatigue, my ANS goes nuts, causing my high heart rate, sweating, fevers, stomach "dumping," shaking, etc. Additionally, the episodes actually worsen perception of pain because my nerves are going nuts... so I'm caught in a vicious cycle. The inflammation in my body and the arthritis causes pain, which can set off my nervous system, which causes my weird episodes, which causes more pain. I'm supposed to try to identify what exactly is triggering the episodes. He wants to figure out what specific labs are out-of-whack before the episodes so we can try to correct them. Hopefully we can prevent or at least anticipate when things are getting out of control. At the very least, what he said helps me understand a little better what's going on in my body!

Dr Pain and I are both pretty frustrated that nothing is really helping me feel better. We know that the bottom line is that I need something to decrease the inflammation that's causing the GI issues, fevers, joint pain, etc. The stuff I'm on now can mask the pain to some extent, but that's it. I bet that a couple Advil would do more for my pain than all the narcotics in the world, because it would treat the inflammation. The bummer is that pretty much all of the traditional things used to reduce inflammation aren't options for me for varying and complicated reasons, so my choices are limited. The other bummer is that the options I do have can take months to kick in. I'm hoping to start something new this week... so I just have to hang in there until it kicks in. Getting the adrenal/ANS stuff sorted out will be a long-term thing, but it is supposed to be easier to manage once my body is less sick and stressed from inflammation.

Twitchy is doing okay. Not as good as he was a few weeks ago, but still a lot better than he was back in March, yay! I'm dumping a lot (I know I keep using that term - it's really what it's called! Basically, when I'm dumping, anything I swallow just goes right through me and my body doesn't absorb it, which is quite problematic for my weight, hydration, blood sugar, and taking pills), but overall I'm having less tummy aches and nausea, so I'll take it!

I just have a bit more school left... a final on Monday, some make-up quizzes on Tuesday, and another final on Friday. Then I'm done. Just one more week. I just hope I can do it. I'll still have to finish up my physics class in the fall, but that's okay. I'm kinda bummed and feel like a loser to STILL not be graduating, but God is in control of all that! I haven't been able to study at all since Wednesday because I've been feeling really terrible. So I'm gonna go attempt to now...

Please thank God that the sleeping stuff is working! That's a really big deal. I'd also really appreciate prayers for encouragement and a break from the pain. It's very disheartening when there is really nothing they can do to make you feel better. Even my ER runs really only helped for a few hours. Once again, it's a good reminder that my trust and hope doesn't rest in any medicine or doctor, but in God alone. He is the one in control here, and so I know that He is working for His glory.

Hannah ;)