Monday, June 11, 2012

Week 5 - Glimpses of Hope

Late last week, I had a Gallium Scan to check for an abscess... this is very cool. On Thursday, they took a vial of my blood. They rushed the vial in an unmarked armored vehicle to a secret laboratory, separated the white blood cells out, tagged them with a radioactive isotope, and returned the vial to my bedside, where I was re-infused with my own cells, now tagged. I kid you not.*

On Friday, they scanned my body. Everyhwere the tagged white cells go should light up like Christmas lights in your body, so any area of infection will show up in bright white. My test showed NO areas of increased white cells - NO Christmas light effect.

This is good and bad. On the one hand, I don't have an abscess! I have a clean bill of health as far as intraabdominal/pelvic infections are concerned. Yay! On the other hand... I have this extremely elevated white count, fevers, and incredible pain. And we don't have a clear explanation for why this is.

The last several days have been unbelievably hard. Probably some of the hardest I've ever faced on my journey with UC. I have been in so much pain without getting any relief from any medication, stretch, ice, heat, walking, rest... I cannot sleep due to the pain. My blood pressure has been dangerously elevated, partially due to steroids, most likely, but also from the stress of the pain. My heart rate soars into the 140s as my pain spikes. I have basically been pacing, crying, and completely incoherent about 80% of the time due to the pain. It is unimaginable.

Nearly as frustrating has been the inability of the doctors to understand or treat the pain. Pain medicine that would   knock me flat on my back seems to have no impact on my body at all. It is muscular pain in my shoulders and neck. I have NO idea why it hurts so much there. The doctors can find no explanation for the pain... so they start to look at me a little funny. I KNOW something is objectively wrong. Every time when my pain spikes, my white blood cell count spikes. The general consensus is that I am having a severe systemic autoimmune inflammatory reaction. Basically, my body has gone haywire and is attacking itself all over the place.

I spoke with a Rheumatologist, who says that, in addition to having arthritis, I have inflammation of all the tendons that attach the muscles to the bones. Additionally, I have some kind of crazy muscle pain. They are throwing around diagnoses like fibromyalgia, complex regional pain disorder, etc, but none of the diagnoses seem to fit. Apparently my body just does things in its own special way... including coming up with new autoimmune disorders!

With the knowledge that I don't have infection, but rather an autoimmune problem... the doctor this morning gave the "all clear" sign... and... after five long weeks... we are starting to plan for DISCHARGE!!!

The treatment plan is as follows:

1. They changed my IV steroids to oral. I have gained 15 lbs from the steroids already! My face is so round; I think at least 5 of the pounds are in my cheeks! ;) I am eating like a prize fighter... I haven't eaten this much since... before I got sick with UC! I am sooo hungry all the time, and eating is FUN and food tastes SO good, and my stomach doesn't hurt after I eat. This is aIt least partially an artificial response because of all the steroids, but I think that some of it is that my stomach is just a lot happier post removal of the grapefruit of infection!

2. I was restarted on methotrexate shots. These are a chemotherapy medication, used at a low dose to suppress the immune system a little bit so that it will quit attacking me! Apparently this med is a bigger deal than I thought. I usually give myself my meth in a little shot. Well, this was quite a production. They sent up not one, but TWO nurses from the oncology floor. They covered themselves in gowns and gloves and masks, carried a huge yellow HAZARDOUS WASTE bag, and proceeded to drape my bed and body with sterile drapes! They let me give myself the shot, but cringed that I don't wear gloves when I "shoot up" at home. I am not really sure why it's okay for me to put something inside my body, but I have to wear gloves to prevent it from getting on my skin?

3. I will get in with a Rheumatologist and they will decide what other treatment I need to be on long-term. The Rheumatologist here at the hospital suggested Remicade, Humira, or Cimzia. Lots to think about here... In addition, I am on a new nerve pain medication.

4. I am switching from a MILLION pain medicines to just one. The meds aren't even really helping, and it feels like they have no impact on my body. So, the best thing to do is replace all the meds with ONE med, and slowly taper down off that med. Over the next several days, I will be making the switch from the million meds to one. This must be done in the hospital with close monitoring. Please pray for all to go well. They tell me I will be fairly uncomfortable as they take me OFF the meds I'm on now before the new meds kick entirely in. They don't want to overmedicate me - I could stop breathing - which isn't really what we're trying to accomplish here. ;)

There's more, a lot more, but those are the highlights! I am sorry I have not done the blog justice lately, but things have been so unbelievably hard that I've been completely unable to blog!

I praise God for seeing me through this week. I am incredibly blessed by my dear family. They have been my rock and God used them in a mighty way to bring me through this past week or so. I honestly do not know what I would have done without them. My mom was at my side 24/7 (she is now soooo sleep deprived...), Sarah listened to me bawl my eyes out and brought me foot scrub and hair stuff and made me feel like a pretty girl again... Joseph comforted me, and he snuggled in my hospital bed with me to watch TV shows... Dad came to be with me and make everything better, because that's what Daddies do...

And friends! So many people have prayed, visited, sent cards, messages, texts, and some outrageously amazingly wonderful things... I am blown away by your love!!!

I am so very thankful that things are starting to look up a bit - that we are beginning to plan for home!!!

God has been by my side throughout the sometimes horrific events of this week. A Psalm that has been especially on my heart is Psalm 42. He talks about his soul thirsting for God like a dear pants for water. His tears have been his food day and night. Okay, check. Boy, can I relate to this guy.

He talks about how he remembers how he used to go to God's house and be joyful and happy.

So, he asks himself:

"Why, my soul, are you downcast?
Why so disturbed within me?
Put your hope in God, for I will yet praise Him.
My Savior, and my God."

He reminds himself of God's greatness, of what God is capable of, of what God has done, of how God has been with him... then laments that God has forgotten him! He is suffering and people are noticing that God isn't with him! What's happening? Where is God??

Then, one more time, he instructs himself again:

"Why, my soul, are you downcast? 
Why so disturbed within me?
Put your hope in God, for I will yet praise Him.
My Savior, and my God."

...And that's the end! The Psalm doesn't say, "And then God came and fixed everything, and all was right with the world once more." The situation didn't change. But the Psalmist was working really hard at changing his attitude! Don't put your hope in this situation or in people! They will always disappoint you. My hope is in God. My hope is a sure hope of eternal life. This hope is a living hope, through the resurrection of Christ Jesus from the dead. And this hope will NOT disappoint us, because God has poured out His love into our hearts by the Holy Spirit, whom He has given us (Romans 5:5).

Hannah ;)

*Okay, the part about the unmarked armored vehicle was conjecture. And the lab may or may not be secret. But the rest - truth.

1 comment:

  1. Hi Hannah -

    I'm Carol Bennett's sister...I am guessing you know her since she is following your blog. The pain in your neck and shoulders sounds a lot like what I get with Shingles (which are common with low immune systems). I will get headaches and severe neck and shoulder pain (feels muscular) and sometimes I will get an outbreak of shingles and sometimes I won't. Have you had any itching on your back or anywhere else that sometimes feels electric but nothing shows up? This is just a thought...

    I've really enjoyed your sense of humour in your blog. Hang in there!

    By Grace Alone -