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Sunday, February 27, 2011

Boggy

This week has been rough. My joints have been pretty bad... I've more or less been coming home from work and going straight to bed! ;) I'm really thankful for the perspective God has given me this week... it was quite helpful to think (as I was struggling to get out of bed or something) that six months ago I was hanging out in the hospital, so sick and drugged that I didn't remember where I was most of the time, having tubes and wires and monitors and lines covering my body... makes a little joint stiffness seem fairly insignificant!!

I was able to get in to the rheumatologist this week (my appointment wasn't until the end of March, but she kindly came into the clinic to see me!). Unfortunately... there's not a lot that she can do. Let me back up a little bit...

My MRI showed that I still have one abscess. *Sigh.* It's just 4 cm or so, but I also still have an elevated white count. So essentially, my body has walled off that area of infection in my belly so that it can't spread throughout my system. That's good, but it also means that the antibiotics I've been taking can't really penetrate into the infection to make the last abscess die. The MRI also showed that the abscess is basically connected with the area where my colon used to be... hence the passing of blood. It also showed some other possible fistulae - things connecting that shouldn't be connected.

My GI Dr. emailed me the results of the MRI... but no comment on what, if anything, needs to happen now. I emailed him about it last Monday, but I have not gotten a response yet. So I'll start calling on Monday.

So... because I still have active infection, Rheumy cannot give me most of the medications that she thinks would be the most helpful for reducing the inflammation in my joints. I'm not supposed to take extra steroids because of my adrenal problems, so that's out, too. I've had adverse reactions (pancreatitis) to another med we could consider. So I am going to try a different anti inflammatory med to see if it will allow me to, you know, straighten my legs again. ;)

Rheumy felt my joints and asked me if I thought that they felt "boggy." I'd never really thought about applying that particular term to my joints... but sure, they are boggy, I guess! ;) Maybe that means swollen?

It's easy for me to get bogged down with the frustration of not being healthy yet and continuing to have all these interconnected issues. It feels like I'm at a stalemate with a lot of things - the abscesses won't go away, but we can't do anything about my joints until they do. I can't taper off steroids any more until the infection is completely gone, but being on steroids means that any surgical procedure to fix the abscess/fistulas would likely result in complications.

Thankfully, life is so much bigger than these issues. God is so much more powerful than all this. It doesn't really matter what happens to me... what matters is if I honor Him with my reaction to what happens to me. It's not about my circumstance, it's about my God. "For this momentary light affliction is producing in us an eternal weight of glory far beyond all comparison..." II Cor 4...

Hannah ;)

Wednesday, February 23, 2011

Perspective

Six months ago today, I went in for surgery to have my J pouch (Twitchy) removed. It was the beginning of a 4 week long hospital stay filled with more complications than anyone could have imagined.

After a 5 hour, 15 minute surgery, I wound up in recovery for over 5 hours as they could not get my pain under control, and my blood pressure was very low.

Late that night, I had to be transferred to the ICU. My heart rate was 180 (three times my normal!) and my blood pressure bottomed out. I was off and on delirious.

Today, I got up, showered, got dressed, ate breakfast, got in my car, drove to work, worked, ate lunch, worked some more, drove home, ate dinner. These may not sound like great accomplishments to you... but each one of those tasks represents a huge victory to me. There is not a day that goes by that I do not thank God for whatever He allows me to do that day. There were so many days this past year when I was physically unable to even get dressed or eat. The Lord has faithfully brought me through so much.

Six months ago, I asked you to memorize Romans 5:1-11 with me. So many of you joined the Facebook group and memorized these great words of God. Please, this week, review Romans 5:1-11. Read it every day. Practice quoting it each day. Meditate on it. Ask God how you can live it out today. Share the truths God teaches you with someone else in your life. God's word powerfully comforted me when no family member, doctor, treatment, or medicine could.

Romans 5:1-11 tells us that God allows us to rejoice even in our sufferings. This is because of the great gift we have received through Christ's death on the cross. While we were still enemies of God, living for ourselves in our sin, Christ died for us. We have received love and forgiveness and a right relationship with God. Because of that gift, we have an incredible perspective. It's not that the sufferings of this life don't hurt. They can be very painful. It's not that we don't go through unbelievable challenges. We do face them. But we have this perspective, this hope. It's not in this life. It's not in a circumstance or a human. It's in Jesus' death on the cross, which gives us a right relationship with God and the promise of eternal life. That's a hope that will never disappoint us!

Hannah ;)

Monday, February 21, 2011

Creaky

The past week has been MUCH BETTER as far as the steroid issues are concerned. I took extra steroids for a few days after the Emergency Room run for fluids. Other than being tired, I think my body is back on track as far as steroids are concerned.

The joints, on the other hand, are a different story. I am super stiff and limping around everywhere. I feel like I need WD-40 to lubricate my joints each morning! ;) I have an appointment to see the Rheumatologist, but it's not til the end of March... ugh. I am not sure I can wait that long, however, she will probably want to either put me on steroids (NOT an option for me) or a more hard core treatment like methotrexate or Humira (which kind of scare me). So I am not super excited to hear what she has to say.

My tummy is starting to bother me again - the lower abdominal pain I had with the abscesses, which is frustrating, but it's not bad or anything. Happily, I am doing MUCH better with eating!! Praise God! I'm actually getting hungry sometimes, and I'm not dreading eating, and I'm eating my 6 small meals each day! Yay!

Thankful for progress in some areas even if I'm feeling rather creaky...

Hannah ;)

Monday, February 14, 2011

MRI and Crash and Burn

I had my MRI on Friday... it was fine. I was sitting and waiting for my MRI (they made me put on a hospital gown! Soooo not cool!!), and a guy walked by and stopped in his tracks. "Are you okay?" He asked me. I realized I was sitting there all tensed up with white knuckles! I just really dislike MRIs - being stuck in a tube for an hour is not fun. And since my allergic reaction during my last CT scan, I guess I was a little nervous!

The actual MRI was fine. There was a window at the back of the room, so sunlight was streaming in the tube, so I didn't feel claustrophobic. I actually fell asleep for a little while.

I also stuck it to the man on Friday. You see, the imaging center has no parking. You have no choice but to valet park, which is pricey. I pulled up and asked if there was anywhere that I could park. There wasn't. You have to valet park. I was mildly irritated; I didn't really want to spend a bunch of money on valet parking! When I signed in at the front desk, I congratulated the lady. "You've got quite a racket goin' - forcing people to valet park! Any chance I could get a coupon or something so I don't have to pay the hefty fee?" The lady looked surprised and said that people never complain about that (what is wrong with these people!?!). She leaned in conspiratorially and said, "You know, we never do this, but I might be able to dig up a voucher for free parking for you." I smiled and told her that that would be great!! And she delivered! And I got out for free!!

The only bummer was the driving - from Fort Worth to Dallas to Grapevine (in traffic, through the construction). Actually, though, the construction isn't so bad. When the sun is setting, it reflects off all the pillars that will one day be bridges... I feel like I'm in the Parthenon or something. ;)

Friday afternoon, I started feeling really tired and shaky and yucky, so I just went to bed as soon as I got home from my MRI. Saturday was really awful. I took extra roids, but I was still shaky and dizzy and nauseated and light headed. Saturday night was like a flashback from this spring when I was having those weird episodes where I got super out of it. I couldn't put together a coherent sentence and I was shaking all over. Not. Good. Sunday I just laid low. I felt okay for a little while, but mainly was in a ton of pain. In the evening, I got all nauseated and sick to my stomach, despite all my anti nausea meds.

Today was more of the same, plus I started dumping. This never ends well for me. My joints are also super unhappy. I survived work (just worked the morning shift), then called Endocrine Dr. And... got told to go to the ER. I really didn't want to go (tomorrow would have been THREE months hospital free!). But I was responsible and went. I got some fluids, and I feel somewhat better now. Sure wish this would NOT happen, though! ;) It is always funny to go to the ER... the doctor always hears my life story, then asks, "What do you want? What works for you?" So I basically tell them what I need! It's weird.

Finally... a big shout out to the Seneca Ladies Bible class! They sent me a big package of Valentines!! I came home from the hospital all grouchy and feeling awful, and I got to open all the pretty cards. It made me very happy and I felt very loved and blessed! What a sweet ministry. I am so thankful!

Hannah ;)

Wednesday, February 9, 2011

Update

Sorry it's been a while since I updated! The snow days last week were fantastic - I just laid around and basically did nothing, which was very good for my body! ;) This weather has been pretty horrid for my joints - they are super stiff and weak. You know that feeling after you've just worked out really hard or run for awhile? The jello leg feeling? That's how all my joints have been feeling. The good news is that I'm not in terrible unbearable pain, for which I am INCREDIBLY thankful! But my joints just don't work so well and I feel pretty beat up.

God has been so good... I alluded in my last post to how He keeps giving snow days at just the right time! ;) The days when I really could barely walk, work got cancelled! Last night, my joints felt so weak, and I was so stiff this morning. But thankfully, God allowed my joints to feel a LOT stronger today. Plus I had a short day at work. ;) He is so faithful to provide just what is needed at just the right time.

My white count came back modestly elevated, but hopefully that is just reflective of autoimmune inflammation, not infection. I've been feeling rather better as far as the lower abdominal pain stuff, which is good! I'm getting that MRI done on Friday to further define what's up with the bleeding, which has continued. I'm pretty sure that I have a fistula. If so... this would probably require surgery to fix. So. Not. Excited. But God is in control of all that, so I don't need to worry about tomorrow! ;)

I'm working hard at eating several times a day! Some days go better than others as far as the eating and the nausea. But overall, I think that the dietician had good ideas that will eventually "reset" my stomach so my body can get and process the nutrition I need.

Thank you all for all your support and prayers and encouragement to my family lately... it means so much to us! We are so thankful for the love of Christ that y'all show us. You all are such a blessing and your prayers are keeping us strong.

Hannah ;)

Thursday, February 3, 2011

Mmm...Nutella

Today I had my FINAL meeting with the ID PA! That's right; I do not have to go back! I am cleared and released and the abscesses are totally gone! Praise God!! While I get to check ID off my list of doctors, he wants me to add in a new doctor... he is still very concerned about the cysts on my ovaries as well as the possibility of endometriosis. He thinks that my lower abdominal pain is probably from one or both of those things and needs to be checked out by a gynecologist. I told him I really didn't think that it was important to add another doctor, but he was pretty persuasive and patiently listed several good reasons, so, *sigh,* I guess I will have to get another doctor for that at some point.

I got labs today, so here's hoping that they show a normal white count! ;) If so, we can revisit the possibility of restarting immunosuppression/disease modifying arthritis treatments. I am unsure if I really want to go on that type of med. But on the other hand, I haven't been able to straighten my knees since Sunday. Anyways, now I can make an appointment with the Rheumatologist to discuss all that. I'm still feeling rather exhausted and achey, but today's been a little bit better. I'm so thankful that I've had three days off due to the ice. I really could not have made it to work, so God is good to cause such a massive ice storm! ;)

Next, I talked with the dietician. Today I weighed in at my lowest weight ever. She had some really helpful tips for how to eat and what to eat. Because my stomach doesn't empty well and I always feel nauseated, she said it's really important to just eat tiny portions. I need to eat 6-7 times a day, but I have to keep the total volume of food per time I eat at 8 oz or less. Hopefully, this will get my stomach used to eating and emptying properly. And it should decrease my nausea and discomfort with eating. She had lots of yummy, easy-to-digest snack ideas, too... one of her recommendations was Nutella. Apparently, this delicious chocolate hazelnut spread doesn't hurt Crohn's or UC peoples' tummies. And it has lots of good calories in a small serving. So, I got some, and it's delicious! Yeah, Nutella! This is the beginning of a beautiful relationship. Hopefully with these new eating strategies, I can get back to my healthy weight. Or at least have more than one pair of jeans that stays up! ;)


Hannah ;)

Wednesday, February 2, 2011

Hurrah For Snow Days!!

It's been great to have some time off work! ;) I've been feeling kinda yucky since Saturday night. I took extra steroids on Sunday, since I was super shaky and dizzy when I woke up. I've continued to feel rather terrible - just exhausted and hurting. And I'm having my weird cravings again - all I want to do is drink pickle juice! Think I'm a little low on salt? ;)

It's been an emotionally difficult week or so for me and the family, which I'm sure does NOT help me - your adrenal glands help you cope with stress. They give you extra "juice" when things are hard. Since my adrenal glands don't work, I just tank when I get stressed! ;)

My joints are so stiff and sore from the weather change, I guess! I came home from work on Monday night and I was so tired and hurting so much that I just couldn't imagine how I'd be able to go to work on Tuesday... I prayed for a snow day. And... God made it ice! How amazing is He? ;) He is so good! And I have today off, too. It is exactly what I needed.

God is so wonderful to provide exactly what is needed at exactly the right time. He is always faithful! He shows such great care and love... He's awesome. So thankful.

Hannah ;)