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Tuesday, April 27, 2010

Good Bad Day

Hey everybody!

Thanks for your continued prayers and encouragement! They mean so much to me! I'm in a lot of pain again... I think that the weather started changing yesterday afternoon. I've been really hurting since then. Today is also day three with the pain patch - it seems like the medicine only lasts two days, so that's kinda a bummer on day three! I'm also having my weird dizzy/shaky/tired/heart racing/stomach acting up episodes again today, even though I've bumped back up on steroids. My labs from Friday came back today - they were kinda screwy - clearly trending towards adrenal-crash values even then, so at least I know I'm not imagining that something is going on, haha! I just feel lousy.

Tomorrow is the last test of the semester that I'm concerned about. I'm taking one final next Monday, but beyond that and tomorrow's test, I've accomplished pretty much all I need to do to earn incompletes. There was a bit of drama with one professor, but I think he forgot/misunderstood that I need an incomplete because I'm too sick to catch up. He was just really pushing me to finish the course... asking me to take 4-5 tests between now and Wednesday. Once I reiterated that I'm not able to finish the course, and reminded him about the amount of work we agreed on to earn an incomplete (and CC'd my advisor in an email to him), he was more cooperative and agreed that if I can take tomorrow's test, that's enough work. If I want/am able, I can make up additional work next week, but if not, I can finish the rest of the course next fall.

Even though today has been a very tough day, physically, it's been a really good "bad" day. It's neat to see how God has been "spoiling" me with all kinds of blessings to make my life so much easier - it was such a pretty day, work got cancelled, so I was able to get not one, but two naps in!! My professor, after being a little difficult to work with, agreed to our original plan! Two of my advisors talked to me to make sure everything was going okay with school and professors. Dr Pain (have I mentioned that he's pretty much my hero?) randomly sent me a sweet encouraging email today. A pharmacist went above and beyond to get my prescriptions transferred. Just seems like God was going over the top to help me out today. I got to spend a lot of time pouring over the gospels - just reading several chapters. Also II Corinthians 11 and 12. Even though I feel pretty terrible, my soul and His Spirit were just wriggling with joy and contentment inside me. ;)

I was supposed to have a GI Dr appointment tomorrow, but he's had a family emergency and will be out for a while, so I don't know when that appointment will happen. Arg. It was supposed to be the big discussion to decide what "The Plan" will be medically and surgically from here out, which I've been anxious to hear, since at this point my life is a big blank after I take that last test on Monday. I can't plan to start anything new school or job-wise until I know if/what type of surgery/treatments we're gonna do and when we're gonna do them. They rescheduled me with GI Dr's PA, but I think I'm gonna postpone until I can see him, since I don't know her well, and we're swimming in such uncharted waters that even GI Dr is unsure of what to do (Okay, Mom, you were right... and so I changed my mind and should reschedule when GI Dr can see me).

So I'll keep living in this holding pattern of uncertainly for a bit longer, which is okay- not one of us knows what our lives will be like tomorrow. We think we know, but really, we don't! God is in control, and so I'm trying to not be worried about the lack of a plan... and honestly, the appointment probably will fail to bring a totally clear-cut plan anyways. So this is yet another opportunity to cast this on the Lord and trust Him! It's kinda cool how He forces me to live like we're all supposed to live - trusting Him, one day at a time. It's very good for me!

Thankfully, my sleep issues have been a little better. Despite really hurting, I got a good 4 consecutive hours last night, plus I was able to nap today! Please pray I'd have some relief from pain and be able to rest tonight as well. Also that my body would stay out of the adrenal episode stuff tonight and tomorrow. That way I can focus and be well enough to take that last test tomorrow! After that, anything I do school-wise is icing on the cake. I'm so ready to just quit pushing and give myself a break for a while... almost there...

Hannah ;)

Sunday, April 25, 2010

"This is really something good, now..."

Lisa is home and doing simply great! This recovery is by far the easiest for her, yay! She sounds super positive and relieved - of course, there's still this adjustment stage, but she has such a great attitude and is not having much pain, so that just makes life so much better! I am so thrilled for her... can't even describe it. I'm so thankful for Lisa - she is such a huge encouragement to reach out to me whenever I'm feelin' yucky! Crazy girl texted me straight out of surgery to see how I was doing! Um... how are YOU?!? ;) She is an inspiration to me 'cause of all the junk she's gone through lately! She keeps plugging along and refuses to let anything stop her!

Well... since my last depressing last post... thankfully, I can post some happy news! I SLEPT on Thursday night - about 5.5 hours. That's right! I still woke up a couple times in pain, but it wasn't unbearable, and I was able to go back to sleep! Although I'm still in a significant amount of pain, it is not the please-just-let-me-die-right-now pain I've been experiencing. And the meds seem to be working to keep it manageable. And since I'm in less pain, I'm sleeping better, which really helps EVERYTHING. I see Dr Pain later this week, and I've decided I'm gonna have to add in the sleep aids he's been wanting me to try. I honestly don't think my body or mind can handle another week like last week, and if sleep aids will help, I should give them a try for a bit.

I saw the new Endocrine Dr on Friday. She is an enormous improvement over old Endo Doc and NP. She listened and explained! We're switching prednisone, one of the steroids I'm on, for a really short-acting steroid taken more frequently. This will mimic how the body normally secretes steroids. Also, since I sometimes don't absorb stuff, taking in the meds twice a day increases the chance that I'll get what I need. She wants me to try cutting one of the other steroids (the one that helps me maintain fluids and electrolytes) in half. We will follow this plan for a month, then try to start decreasing everything very slowly. This will take months and months and months, but I don't wanna go fast anyways!

I was able to have a truly fantastic weekend with so much less pain... it is just so good to be alive. Two of my bestest friends got married... this sounds silly, but I made it to the rehearsal, dinner, and shower the day before, was able to help set stuff up and smile in pictures and hang out at the reception and wear heels (although can I walk today? no...) and just have a great time with the whole gang of some of my closest friends without "faking" it. I cannot ever take days like that for granted! I was so thankful that God gave me a special time of feeling decent so I could genuinely enjoy a beautiful weekend and celebrate Kendra and Stephen's marriage!

I did crash as soon as I got home, but it was perfect timing! Per Dr's orders, I had cut the salt and fluid balancing 'roid in half, which did not go over well with the bod. It held out til the end of the reception, but then... my stomach completely freaked, I was shaky and dizzy and my heart went nuts. I tried to sleep it off, but I had one of those yucky episodes by evening. This morning, I still felt terrible, so I bumped myself back up to the whole pill. Still feeling a bit shaky and weak, but better! Guess we were wrong about my body being ready to cut back.

I'm so thankful for all your prayers - I'm so thankful God has seen fit to give me some relief!! I have been at the breaking point this week, but God has been so so good to provide support and less pain at exactly the right time! I am so encouraged by cards, messages, comments, calls, a box of INCREDIBLE goodies (How can I thank you, Zeke & fam? Best day of my LIFE when I got that!!!).... even if I am super slow at acknowledging them at times, know that it absolutely makes my day to hear from you!!

Hannah ;)

Thursday, April 22, 2010

Discouraged

Lisa is doing well so far since surgery - not having much pain, just kinda bored and hungry! Please pray that her recovery will keep being boring and uneventful! We LIKE that. ;) Also that she can get the rest that she needs - that's hard to come by in hospitals.

Abby got to go home from the hospital, yay! Now she just needs wisdom for how to best finish the semester... Please pray that her professors will be very understanding and helpful and have good suggestions so she can maintain her outstanding grades without killing herself with make-up work!

I'm pretty defeated. Since the middle of Monday night, I've been in at least as much pain as I was when I went to the ER. I've only been able to sleep about three hours a night. I'm taking my meds, but I HATE being on all these drugs, especially since my body does not seem to get much relief from taking them. Nothing makes sense because I'm so exhausted and hurting so much. For example: I read an email, and it said one thing... it didn't really make sense, so I read it again... and it said something completely different. Like, the words changed... I was hallucinating and hearing stuff on Tuesday... Sleep deprivation, much?

Some things are definitely improving - Twitchy continues to do very well! But the other problems were supposed to go away as he got better. I am incredibly overwhelmed to imagine feeling like this for even one more day (which is why we're not supposed to worry about tomorrow). I know God will give me the strength to endure whatever He asks me to endure, but I am in a very tough place right now.

Please pray that God will take away this pain and allow me to rest, if that's His will, and for encouragement for my soul! I've been pretty sick for quite a while and experienced a lot of different pains and discomforts, but I don't know if I've ever felt this terrible for so long without relief. Yet through all of this, my faith is still fixed on Him. Last night, I was incredibly, horribly discouraged and despairing. My roommates prayed over me and anointed me with oil. The prayer was truly amazing - they were both led to pray about God's character - who He is, what's true about Him, what He has promised. It brought me so much encouragement and strength. Resting in those things is the only thing that brings me comfort right now. I don't understand what He's doing and I don't even know how I can bring Him glory as I'm borderline incoherent most of the time. But I trust Him and know who He is and that He's good. I want to be wholly His.

Hannah ;)

Monday, April 19, 2010

Prayer Requests

Hi, everybody!

Lisa is going in for her third and final surgery tomorrow, so please pray for a skillful surgeon and a quick, pain-free recovery! She is also having some trouble staying hydrated and absorbing stuff, so please pray they will find some resolutions to that!

Abby is a fellow "got guts" warrior here at school - she has Crohn's disease. Last week, she had to be admitted for an emergency surgery and is still in the hospital recovering. Please pray for Abby's comfort and peace - and that her disease will go (and STAY) in remission.

God allowed me to finish up the last class from last semester. I need a T-shirt - "I took your Biochem Final on Fentanyl and Percocet!" ;) So thankful for that weight to be off my shoulders!

I had a much better day today, pain-wise. I think a) people are praying, and God is choosing to give me some relief, and b) maybe the patches are not working for the whole three days. Yesterday from the afternoon on was rough. This morning I put on a new patch and felt much better. Hmm... Now that I'm not hurting so much, I'm off to get some sleep!! Tummy is still "dumping" and feeling weird and doin' some kinda concerning stuff, but hopefully nothing bad is going on there... just always makes me a little nervous when my upper GI stuff acts up.

Hannah ;)

Sunday, April 18, 2010

More Dr Updates

So been doin' TONS of Dr stuff! Here's the latest:

On Wednesday morning, TCU Dr texted Dr Pain to tell him what was going on, and Dr Pain (who closely resembles a PG rated version of Jack Black) came into the office an hour early to see me Thursday morning. He is possibly my hero. When I'm a doctor, I want to be just like him. He walked in and just said, "I'm so sorry to hear how much you're going through. We have got to get you in less pain. Can I give you a shot right now so you can walk out feeling better?" And he did. I got Toradol, which is my favorite drug in the whole entire world. It's a really strong anti-inflammatory that makes me feel like a million bucks - it's not a narcotic or anything, so it doesn't make you feel weird, just takes away pain! What's not to love (except for the fact that it's really nephrotoxic, and also incredibly bad for people like me who have GI issues, so it can't be taken on a regular basis)? So I started feeling better, yay. Sadly, it's all worn off by now, boo. But felt great for a while.

Dr Pain is practical and compassionate and empathetic and genuinely wants to make me feel better. He had a horrific accident, which inspired him to go into pain management... I really sense that he's been there, and "gets" it. It was a good visit, but a little sad. Everyone is being pretty darn honest with me about prognosis. They tell me that the reality is, best case scenario would be "managing" my conditions. To some extent or another, I'll probably be dealing with inflammation and pain - the aftermath of all the trauma my body and nerves and guts and joints and everything have been through - for the rest of my life. But what's nice about Pain Dr is that he's confident that even if the problems don't get fixed, there's a whole lot we can do to relieve the symptoms. His philosophy is that it's unethical for me to suffer while they try to figure stuff out, and he told me there is no upper limit on what he will do to make me feel better. That is so incredibly reassuring to hear. Then he gave me his cell and told me to text him if I'm having trouble. Overall plan is to stay on the pain patches and try a different type of oral pain med to take on top of the patch.

Rheumatologist is another great doctor. She is like a mom - super down-to-earth and nice, thorough and takes me quite seriously, all without being an alarmist. She walked in, said, "I talked to your GI Dr about what's going on. Wow, I'm SO sorry," and proceeded to hand me a box of Kleenex! That seems to be the general reaction of every doctor I see these days, haha! The conclusion is that I have some pretty impressively flaring "autoimmune inflammatory arthritis." We're upping the disease modifying arthritis med for another four weeks. If I'm still all inflamed and hurting after that, we will need to step up treatments. If God provides, Humira would probably be great for the joints. If not, I would start immunosuppressant shots. As she took my history, she asked how I felt with my current endocrine doctor, because she knows a really good one that she'd prefer me to see, if I was willing to switch. Wow - what an answer to prayer! I told her how wonderful that would be, and she set me up to see new Endo doc late next week!

Next stop was (hopefully) my LAST VISIT EVER to Endocrine Doc. We got some test results - my spine is on the borderline between osteopenia and osteoporosis, which isn't good, but isn't a big shocker, given that I have every risk factor in the book. Unfortunately, I can't do much about this until I get off steroids and another med that interacts with calcium. The good news is that I've been tolerating the steroid tapering well, which is very significant progress! So I'm supposed to cut back the prednisone a bit more, and start taking "vacations" twice a week from one of the other steroids to see if my body is relearning to balance my fluids and electrolytes to keep my blood pressure high enough. Trying to decide what day to take that vacation, since I'll end up taking an involuntary "vacation" if my body is NOT ready.

I'm still dealing with quite a lot of pain, despite all the meds, which is frustrating, especially since I am not a fan of actually taking the meds. But I really don't want it to get so out of control that I have to go back to the hospital, so I'm trying really hard to stay on top of it. Hopefully I'll start feeling better soon. The choice for now is not being able to focus because I'm hurting, or feeling too stoned to focus... but still being in pain. Sigh. Twitchy is still doin' quite well - I am so proud of him! ;) Unfortunately, whether it's from all the meds or from pain in general, my stomach is hurting and upset off and on, which doesn't really help anything.

I am so ready for a break. There are just two more weeks of interning, and three more weeks of school. But I have a lot of stuff to get done just to earn incompletes. It's very tough to study at all, and I just don't learn or retain well these days, which is frustrating. School came very easily to me before I got sick. Since I got sick, it's required more time and effort to do well, but I was able to put forth that extra effort. Now... I simply can't. So it's very humbling to not be able to do as well as I would like. I just don't know if I can do it. I just want to be done. I just want a break. I don't know if I've ever said those things out loud in my whole entire life... and maybe this is pretty selfish and lazy... but wow, I am so ready to just relax for a while. Guess I just need a little pep talk right now! Just have to get through today! Then tomorrow! Confident God will give me the strength to do whatever He wants me to do...

Hannah ;)

Saturday, April 17, 2010

And Sometimes, LIfe Just Sucks

I woke myself up because I was moaning so loud in my sleep.

Guess I'm hurting.

I'm really nauseated, too, despite having taken my anti-nausea meds around midnight.

But I'm reallllllly hurting. Can't go back to sleep. Shaking because I'm hurting so much. So I took another anti-nausea pill and popped back my pain meds. Waited for them to kick in.

Just threw them up.

FAIL.

Hannah ;(

Wednesday, April 14, 2010

Doctors and Doctors and Doctors, Oh My!

Here's what my schedule is like:

Labs for random obscure infections that could cause my weird symptoms, GI, and chiropractor yesterday, chiropractor and TCU Dr today, Dr. Pain and Rheumatology Dr. tomorrow, Endo Dr. and chiropractor again on Friday. I'm hoping the chiropractor can "straighten me out" - he wants me to come in as often as possible for a few weeks to see if he can help reduce the pain. I definitely felt better and could move better today after he very gently stretched my joints and messed around doing weird chiropractor stuff, so hopefully this will be a good way to decrease pain and promote my overall well-being - without putting more drugs in my system. Other plans are to pick up an internist in May who will oversee my care after I graduate and lose TCU Dr. (*schniff!* I will sorely miss him). Finally, there's another IBD (diseases like Crohn's and UC) specialist that GI would like me to consult with concerning treatment options for pouchitis. She was also very interested in my case and all my other associated "issues" (I suspect out of intellectual/professional curiosity, but if she has some new treatment ideas, bring it on!). So a TON of doctor stuff, ick, but as you can see, getting this stuff under control is taking a much greater priority as my ability to function decreases.

GI Dr and I spoke first thing yesterday morning. He's excited to hear that the pouch is doing better, but not pleased that I'm having so much pain. He presented my case, as you'll recall, but the group was not able to reach a consensus on a good course of action. But the pouchitis is doing better, so, for now, this doesn't really matter! I can stop the anti-depressant/nerve pain medicine, and it's possible I may not even need to take Humira, yay! Please pray that this healing process will continue!

Please pray for understanding for my professors. My body is pretty much toast, and I am not sure what else I can accomplish this semester, however, I don't want to completely drop the semester. This would require me to wait until Spring '11 to retake (and to pay for... without scholarship) all my courses. Most of my professors are willing to take the middle ground and allow me to finish the work on my own in the fall, but some are a little less flexible. May God's will be done, and may I honor Him with my attitude no matter what my professors decide. And I am absolutely confident that God will provide for and lead in whatever direction brings Him the most glory... whether that's me finishing now, in a year, ten years, or not earning a diploma at all. And I will be content in whichever situation.

I'd also really appreciate prayer for rest and comfort for me and the family... once again, I'm struggling for how to get the attention I crave without making these late-night ER runs! ;) Just kidding... but in reality, I know I'm stressing out my family. It has been very neat to see God's peace just rest on every member of the family, but it saddens me how much this wears on them. I've also been having a lot of trouble getting comfortable enough to sleep... despite the strongest of meds... please pray that I can find some relief and rest! But through this, I've had some very sweet times of fellowship with Him, and He's giving me such a heart to pray for others.

Finally, I'm accumulating so many doctors that I feel like I need to pray for protection FROM them, almost! Haha! Ya know, "May the Lord bless and keep the doctors.... far away from us!" ;) In reality, I'm very thankful for how God uses these dudes in white coats, but truly look forward so much to the day when I won't need to step into antiseptic smelling rooms and sit awkwardly on crinkly paper while taking in treatments that are needed, but come at the expense of other body systems (and the wallet). One day... ;)

Also... side note... today marks 6 months since surgery #1. Not quite sure what to think about that. I am rather profoundly sobered at how much has "gone wrong" with my body. But truly, I recognize that not a hair of my head has fallen out without God's kind intention. I continue to be humbly amazed at how He's glorifying Himself through my situation. Just today, TCU Dr commented that he wasn't sure how I keep going or how I can smile when I've gone through so much and have been in so much unrelieved pain for so long. I'm not sure where he stands with God, but I told him that it is only through Him that I can smile and keep going. He said, very seriously, that it had to be God, because it just isn't humanly possible. It often seems like my doctors are much more upset with my situation than I am... I feel sad that they have much less hope than I do... I trust in a God who is bigger than "mystery" problems! So I pray that God will begin to work even in my doctors' hearts to bring them to know Him through this!

Hannah ;)

Tuesday, April 13, 2010

Yeah.... ANOTHER Hospital Run

So... oops... did another hospital run Monday night into Tuesday. Just in too much pain, despite taking the strongest pain pills they can give me. I somehow walked to school and made up two of my physics labs yesterday - so I'm DONE with lab, yay! That makes me feel good. But by evening, the pain levels were just through the roof.

Unfortunately, GI Dr never called me back. In retrospect, I should've called his cell phone, but I was afraid he would either send me to the hospital or brush me off. Of course, I ended up in the hospital anyways... oh well. Since the pain is NOT just GI pain, I don't really think he would have done much. But we will need to chat today.

I am so incredibly thankful for my sweet roomies and friends. Little bros messaging me to say they were praying. Melinda texting me uplifting verses. Meggie offering up encouragement. Katey rubbed my shoulders and prayed with me for about half an hour. Devon found me sobbing in the bathroom and pulled me over to her bed and wrapped me in a blanket and comforted me. Courtney came in and prayed such a beautiful, selfless, God centered prayer. Her fiance piled us all in his truck and took me to the hospital. Devon stayed out way too late with me until my mom and dad were able to arrive. My parents were so sweet to just kill their night to sit with me and chat quietly. I am so blessed to have such amazing friends and wonderful, wonderful family...

The sum of the visit was that I need better pain control and some other treatment for the arthritis. What we've been doing is just not working at all. I restarted a disease-modifying arthritis drug after the UTSW hospital stay, but it can take 4 months to have an effect, so we probably need to add in something else. Typically, they would do a steroid burst to destroy the inflammation, but that is a horrible option for me at this point.

Until I can see a specialist (whether it's my GI or a Rheumatologist), I need to do something different to manage the pain outside of the ER. I finally gave in and I'm now wearing a patch that continually releases pain medicine into my body. We think some of the problem is that I don't always absorb the meds I take by mouth. The patch allows us to bypass the GI tract completely. Hopefully, having the constant level of meds in my system will calm things down in a few days. I'm chilling at home with the family so they can keep an eye on me and how I'm responding to the patch.

Please pray that the doctors will have wisdom to figure out what's going on and/or make me feel better.... I am just so very tired of being bounced from specialist to specialist, with no one expressing a willingness to see the big picture. The really super incredibly good news in all this is that Twitchy is actually doing quite well - he's really turned a corner, and while still a little uncomfortable, is healing up!!! The weird thing is that the joint inflammation is supposed to go away as the GI inflammation goes away... so this is all quite mystifying.

In the hospital, my dad and I were recalling some of the challenges God has walked us through over the past few years. Our family has been through quite a bit! The amazing thing is that we can trace God's hand, seeing clearly how God has used very tough times to bring us closer to Him and show us His incredible grace and goodness. And for that reason, I can give thanks in these trials.

"I'm not gonna run from the very things that will drive me closer to Him, so bring it on!"

Hannah ;)

Monday, April 12, 2010

Hospital Run

Well... I made another hospital visit. I've just been hurting so much, and nothing has really been helping. So I told my mommy I needed to go to the hospital... and she came and got me and took me. What a good mom. And my daddy texted me verses the whole time. ;) So wonderful.

Tip for hospital users: if you throw around the "bleeding internally" phrase in the ER, you get seen real quick. ;) I was truly blessed to have very sweet, caring nurses. Although it took them about a million tries to get into a vein, I was rewarded for my patience with lots of strong IV pain meds. Unfortunately, even that wasn't doin' the trick to take the edge off. For round three, the doctor upped the dose, and I finally started to feel some relief! Yay! Praise God. So I got to come home around 11:30 pm.

I'm a little frustrated that it came to the point that I had to go to the hospital to get the pain under control - I've been telling Endo Dr and GI Dr how bad I'm feeling. I don't complain to my doctors unless I'm really suffering. So it was disappointing to feel like they didn't take it seriously, and I wound up in the ER. On the other hand, I know that there's really not much else that they can do. It's just a tough situation.

No one even knows exactly what's going on with the ridiculous pain levels - if it's my arthritis flaring, steroid-related arthropathy/myopathy or what. The plan is to talk to/go to clinic to see GI Dr tomorrow. He wants to play around with my meds some more (oh fun....). The concerning thing is that even if Humira is my magic cure, it can take quite some time to kick in. That means we have to find a way to make life livable until it has a chance to take effect... provided that God leads that Humira is the treatment option we should take.

Please pray for wisdom for the doctors - that we'd be able to work out a plan to get me more functional, even if we can't pinpoint exactly what the problem is. Please also pray for grace and endurance and hopefully relief for me! I pray God is honored through me. Finally, please pray that God will clearly direct the doctors, my family, and me to make the best choices in terms of treatment options.

While I was in the ER feeling so bad, I kept listening to a song over and over again... the words are inspired by Isaiah 53:

"Surely He's borne our griefs, carried our sorrows,
Though we've gone astray;
It's by His stripes and wounds, we were healed
On that glorious day....
Oh Lord, I've pierced Your hands,
Yet Your blood declares my innocence!"

I was reminded of the suffering of Jesus, who took my sin on Himself so that God could count me innocent. What an amazing God. I was also encouraged to remember that Jesus knows what it's like to suffer, and has suffered so much more than we will ever face. This week, I've been meditating a lot on Philippians 2 and 3. There's a verse that talks about knowing God in the fellowship of His sufferings. There is a sweet intimacy and closeness with Christ that can only be gained in suffering. I am truly blessed that He's giving me that deep knowledge of Himself through trials.

Hannah ;)

Thursday, April 8, 2010

Good Hair Day

So... Wednesday was a better day, energy-wise! I was worried about the 'roid drop, but I actually was hardly shaky at all! That's weird, and doesn't make sense to me, because the shakiness originally began because the steroids were too low. But I'll take it! No complaints!! ;) I did have significantly more swelling and stiffness in my joints - the steroids have been masking that, I think.

Today was a very shaky, tired, and yucky day, despite the fact that I slept (or was in a drug induced coma... haha) all night. I barely made it to class, then actually called in sick to work - which I never do. Twitchy is hurting a bunch more than usual, the headache is back, and the joints continue to be most unhappy with the weather fluctuations. I was so shaky that I thought it best to NOT get behind the wheel of a car and go to work. But really, the biggest bummer was that I had this really awesome hair day... and no one got to see it. ;)

I'm in a difficult place - I don't know what to do when I feel this bad. Not even going to the hospital has really helped. The issues are so varied that no one really knows what's going on. I ended up emailing GI (who will probably tell me to wait on Humira) and calling TCU Dr. I feel so terrible contacting them, because there truly isn't much else they can do. Then they feel sorry for me, and I feel worse... because now they feel bad, too.

TCU Dr. emphasized that there's no way I can keep living like this, and that I need to try something different to make me more comfortable and functional until I can get on Humira. I agree completely, and told him that was good in theory, but what do I do? He encouraged me to email Dr. Pain so I can try one of his suggestions. Stepping up or adding more meds really freaks me out at this point (although we've actually eliminated some of the meds for Twitchy, so I'm down to something like 9 meds, not counting vitamin/supplement stuff). But TCU Dr asked me if feeling drugged would be better or worse than feeling how I feel now. He has a point. I mean, the world would simply be a better place if I could get out in it with my great hair. Just kidding. ;)

My family and I continue to pray that God will lead clearly about trying Humira. We've decided that God will show us yes or no by how the financial assistance stuff turns out. If He doesn't provide - then He's protecting me from taking it. If He does provide - then this is something we will try.

Hannah ;)

Monday, April 5, 2010

Here At The Wall

Hi, everybody!


The last week has been truly awful, pain and energy-wise. I finally hit a wall I can't push through. I'm talking to all my professors about taking incompletes in my classes and finishing next fall. I will finish as much as I can this semester, but not stress if I can't take all my tests. This is a big bummer, since I'm SO CLOSE to graduating, but of course God knows what He's doing. Mainly, I think He's tearing down my pride in my grades and ability to push through anything.


I've been crashing every day, and between the constant pain and the crashing, it is nearly impossible to focus or sit up or study. Often I'm so tired and hurting so much by the time I get to class that I physically can't take notes. Please pray that my professors are willing to accommodate me.


I saw the Endo Dr. The lack of communication from their office has been really frustrating, and this visit has made me think that it's not just the Endo NP who is unhelpful. I had to drag answers to my questions out of him. He honestly didn't have any helpful suggestions. He wouldn't tell me why he was drawing the labs he wanted to run, and he suggested adding in a new med, but he didn't know what kind of med it even was and didn't know if it would interact with what I'm already taking. I was unimpressed. I asked him what I can do differently to be functional and feel less shaky. He told me he has no idea why I feel so yucky and didn't know what to tell me to do besides continuing to take my meds. I felt like he was really brushing me off. "I appreciate that you don't feel well. So I'll see you next week. Wow, you're really trembling! Your heart rate is through the roof!"

It was frustrating, and I roid raged to my poor mommy about it all the way home. Neither one of us was impressed with his doctoring. But my reaction of anger was wrong... sorry you had to hear that, Mom... I have those darn reminders to myself on my desk still - the one about trusting God, not the means He provides has definitely been on my mind. I had built up a hope that this visit would bring an answer to the pain and feeling horribly shaky and weak and exhausted stuff... and it didn't. But really, my hope should never rest in a doctor or a pill or anything but God Himself. I have to remember that.

Anyways, the plan is to alternate days with the steroids: cut them in half three days a week, and stay at the current dosage the other four days. For me, days I cut back tend to be really rough on my "special," hyper-sensitive body - I time the drop to be on weekends so I can recover from the "run over by a truck" feeling - so I'm a little worried that all this up and down will send me for a loop, especially since I'm already really low on energy. On the other hand, I've never tried the alternate day dosage plan, so I'm very hopeful that this will do the trick and "wake up" my natural steroids.

Although I'm feeling quite poorly and really hurting (can't get relief even though I'm stoned out of my mind most of the time, lol), some things ARE improving! I am gaining a bit of weight finally (I'm on three different meds that can cause increased appetite - seems to help!), which is great, and my stomach seems to be settling down and digesting stuff properly. I haven't had a blockage in a few WEEKS, which is fantastic! Twitchy is also doing a little better! He is definitely sick and hurting, but not horribly concerning like he was just a few days ago. I've also been having these awful headaches, but I've been headache-free since Monday, yay.

I am trying some simple changes this week... Doing something just for fun every day. Hanging out with a friend. Being outside. I need to relax and rest and recharge, but I think that doing that by being alone in my room all the time is not doing me any favors!

I need wisdom so badly to make decisions about school, deciding what meds to take or not take, what doctors to call/see/part ways with... James wrote that we should consider it all joy when we encounter trials, since the testing of our faith produces endurance. Then he said, "If anyone lacks wisdom, let him ask of God, who gives to all generously and without reproach, and it will be given to him." God is so good and faithful to bring trials to build faith, and then gives wisdom if I just ask! What a loving Father. Please pray for me and my family as we ponder all these decisions!

Julia had a fantastic day the other day - keep praying that things will continue to stay that way! I hope that this is her "new normal," 'cause it sounds like she is doing great!

Hannah ;)

Saturday, April 3, 2010

Blessings Great and Small

Thursday morning was a series of unfortunate events. After three hours of sleep, I had a biochemistry test at 8:00. I normally walk to school, so I didn't buy a parking sticker this year... but I was too tired to walk. So I drove, and parked in a visitor lot. Bombed my test. I was making it up from the 6 weeks I missed last semester, so I hadn't been in class for the material. Guess some of what she said in class was important... I got notes from people, but there was all kinds of stuff on the test I had never heard of. :( I felt so bad and was shaking so hard that I couldn't even take notes in my 9:30 class. I went to pick up my prescriptions, and they cost over $700. Went to my car to drive to work... and I had a ticket on my car. Also, one of my hubcaps was missing. Then I looked at my phone. I had a few voicemails. Turns out my insurance is not going to cover Humira.

But - I had about 20 minutes before I had to leave for work, and it was beautiful, so I went to the Botanic Gardens, sat under a tree, and prayed. Then at work, a donor brought chicken fajitas for us! Work was pretty easy, which was a blessing. So yeah, that was an interesting day! Physically, emotionally, I had a bad day, but God was really faithful to give me such nice things that afternoon to lift my spirits! He didn't have to do that! ;) He's so good. Spoiling me with these blessings.

I later found out that GI Dr's nurse, who is kind of like a second mom to me, is working on some paperwork for me... they think I probably qualify to get assistance from the drug company for Humira. So I'm working on all that paperwork. Please pray that God will provide if this is the treatment I should do! He is always faithful to give exactly what I need at the right time.

I'm still feeling pretty yucky. Tired and shaky and joints and J pouch hurting. I'm trying some lifestyle changes this week suggested by Dr. Pain that will hopefully help with the adrenal stuff. I have a really hectic week coming up, so I'd really appreciate prayers for strength and perseverance! I really can't postpone any tests or anything, as I'm so far behind. As it is, I will average about three tests a week from now until I graduate. So I may have to let go of my perfectionistic nature and be satisfied with less-than-wonderful grades.

Please keep praying for Julia - she's a little down as she adjusts to the J pouch, and she's having more pain/discomfort than anyone would like. Also for Steph, who is having a bit of a rough time with her J pouch, too.

As it's Easter... I'm reminded of God's sacrifice. This week, God has overwhelmed me with His love. All those little blessings - He doesn't have to do those things. All the huge blessings, like salvation, come to us at such an incredible, awesome cost to Him. This God, who is so good and amazing to deliver His Son up to pay for our sins, would never do anything but what will bring Him glory. I am just resting in His love, knowing that He is working in me for His honor. I can't even describe how blessed I am to be His child and be forgiven.

Hannah ;)