The Good, The Bad, and The GREAT!

Oh my!  I am delinquent in posting.  I was very discouraged after Thanksgiving.  In hind site, I just pushed it too hard too early.  We had family here and I was feeling "better" so I worked too hard, got too tired, ate too much and I paid the price.  When I started hurting again after Thanksgiving, I was really sad.  It was a rough week of recuperating and trying to stay positive.

The Good...
However, I took my next round of Humira on December 8th after Thanksgiving.  I remember that I was so grateful it was a Saturday and Babe was home, as it wiped me out.  I probably took a 4 hour nap that day.  I fully believe that was a "healing" nap.  I woke up cautiously optimistic at how I felt.  The next morning I had a skip in my step and each day got better and better.  I can safely say that since then, to date, I have not had ONE day of pain.  For this girl, that is a HUGE miracle.  Each day I had been improving, but it was more of a "I feel less pain" than "I feel great!"  Now....I feel great!  I think that shot was the turning point.

My family came down for Christmas and I was cautious about overdoing it and made a good effort to pace myself.  We had a wonderful time, had wonderful food and I never suffered a bit.  Again...still cautiously optimistic.  I was so afraid that I would have to start taking an additional drug WITH the Humira that the GI initially wanted me to take as well.  I asked him if we could start with JUST the Humira and if it didn't work, we could add it.  I just didn't want to take more meds than need be and that med added further risk to my health.

SO, it is safe to say I began 2013 feeling healthy!  Woohoo!  Sad to say, that Babe and I just celebrated our 10th wedding anniversary yesterday and as we thought about past anniversaries, I was sick for at least the last four.  When your illness is defined by eating, going out to a special dinner isn't exactly enjoyable.

The Bad....
I saw my hematologist last week. I thought I was just there to check-in, however, he told me that my stored iron (Feratin) was dangerously low again. UGH! I was feeling so good. I certainly wasn't prepared for that.  However, in hind site, I did have signs that I overlooked.  I wasn't sleeping well for a while, my bones hurt (I can't believe I didn't put that together), my joints hurt, my skin was really dry.  TYPICALLY, I start to crunch ice...true symptom!  When he asked, I said, "No" and he asked if I was craving salty foods.  BINGO!  I had just said to his nurse (when I saw the scale) that I needed to cut back on the salty foods.  I am not typically a salty food eater and I had been over New Years.  Isn't the body amazing?

So, this meant I had to go in to get 2 iron transfusions this week.  The nurses are so nice, it's not usually a bad experience, but I will admit that the IV's are starting to hurt more and more.  My veins aren't good anymore, they are scarred and often invisible.  I try really hard to drink lots of water the day before and on my way to plump them up, but "skinny" is used to describe my veins and NOT my body :)  It hurts and they have to try multiple times.  Yes, it's minor.  But I am starting to get anxiety before they poke me knowing they will poke multiple times and end up in my hand...which I hate! :(

He does believe that the low stored iron is not a reflection of my current health, but due to the resections of my small intestine and stomach years ago.  Apparently, the portions that were removed were most responsible for absorption of iron and it takes 10-15 years for your body to exhaust all its storage and end up where I am.  I fully believe that and know that he knows what he is talking about.  However, it has been almost a year since I last had iron (I think).  I have to believe that since I was so sick and so inflamed that nothing was being absorbed. I am hopeful that as the inflammation improves, so will my iron absorption...wherever it can be absorbed.

The Great...
This is be BEST news!  The day after I saw the hematologist, I saw my GI doctor.  After our experience with the GI doctor in Houston and the total lack of anything personal, I wanted to jump into Dr. Dural's arms.  This was the first time I saw him since he sent me to Houston for surgery.  He is so nice and has a very thick accent.  If I were to guess, I would say it was of the Russian/Czech kind.  He sat down in the chair and looked at his little laptop and said in his thick accent, "Thes drug is verking MIRACLES on your body!"  I knew I was feeling better, but his blood test was one I was anxious to hear the results.  He said that the CRP determined if there was any inflammation in my body.  Typically that number is off the charts for me and it was a ZERO.  A ZERO!  He said I had NO inflammation in my body.  Definitely a miracle.  I almost jumped into his arms {almost} but I definitely had tears in my eyes.  Tears of joy.  I am kicking this thing!

I am kicking this thing in the butt, but not on my own.  My friends don't know it, but every time I see one of them that has prayed for me or sent me a note or a text, it still encourages me.  I remember how they lifted me up and encouraged me when times were bleak and how they STILL encourage me and tell me they are praying for me.  I still have the texts on my phone that I received when I was in the hospital.  I still have the cards.  There's no way to express how much every little gesture meant to me and how much even the smallest gesture carried me thru it all.  I am one lucky girl. Lucky to have such amazing friends and family, lucky to be improving so much, lucky to be able to eat with my family.  Just plain lucky! :)

God is good.  All the time.  Here's to 2013...a HEALTHY 2013!

Ups and Downs

I don't think I ever thought in October that I would still be battling for healing in December.  I guess I assumed the new meds would be a miracle and abracadabra me into perfect health.  I was wrong.  I am still learning to be patient, but fear is creeping back into my thoughts.  I fear that "What if" the Humira doesn't completely heal me?  "What if" I STILL have to have surgery if those spots that still hurt are actually scar tissue? "What if" nothing gets me further along than what I am now?  OH, how I can think of the "What if's" and really spiral downward.

The fact of the matter is that after I wrote my last post, I went right back to ground zero after enjoying Thanksgiving dinner.  It was fabulous food, but it wasn't even close to worth the return of the pain.  I was so careful not to eat bread and only eat things that were soft and smooth.  The only guess I have is that it was a salty meal, which probably retained water and aggravated the already existing inflammation in my gut.  OH, the pain.  I went back on the pain pills that I so proudly had not taken in at least a week.  I went back to bed and I went back to being non-functional for at least two days.  I was SO mad!

I have had at least one more sleepless night since then.  I keep reminding myself that I am having BY FAR more good days than bad days and I must stay focused on that huge fact.  Maybe its just that.  Maybe I should still expect some bad days {gulp}, but continue to recognize that there are far more good than bad days.  

Next shot on Saturday.  Praying for MORE healing, more energy, more peace and continued protection from adverse effects.

But our citizenship is in heaven. And we eagerly await a Savior from there, the Lord Jesus Christ, who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body.
—Philippians 3:20–21 

AMEN!!

Happy Thanksgiving!

Everyone in my house is asleep at 9:11pm....I love it when it's quiet like this.  I am watching the TCU game {GO FROGS!} that we were all really in to when it began.  One by one each precious little boy drifted off to sleep and Babe and his parents disappeared to their rooms.  As I carried/dragged the boys into their beds I was overwhelmed with thankfulness.  I love them so much.  I hate that so much of OUR lives have been affected by my status and I struggle with a lot of guilt at times that I can't or haven't done things for them because I have been too sick.  I am SO thankful that I am on a good road. I feel for the first time in years that I am on the road to recovery.  Praise. The. Lord.  I don't know why it is taking SO long, but I am thankful for the progress I am making.  I am thankful that I actually ate food today.  It still hurts, yes, but it's not an "off the chart" pain.  I am thankful for my mother-in-law who helped prepare our meal and never said anything when I disappeared to my bed more than once to rest and recoup.  I am thankful for our family that was here today and thankful for my family who wasn't here.

This year, I am thankful for the little things.  When people say "Here's to health & happiness" it means so much more to me.  Health is something we all take for granted until we don't have it.  And when we don't have good health, it affects everyone around us.

I am so thankful for my health.  And beyond thankful for my friends and family that have seen me through the last very difficult two months.

HERE is to Health and Happiness!

Ironically, my sister was diagnosed with Celiac Disease a few months ago.  I think this cartoon my mom sent aptly describes our future dinner table...

p.s. 3rd shot arrived and I will get it on Saturday :)

Darn It!

I have lost count of the days that I have felt pretty good!  How amazing is that?  I am probably on Day 4 or 5.  I still have a specific location that I refer to as my "3am" pain.  If I have had any type of full meal at dinner vs little meals, at 3am I wake up to some pain.  Not intolerable pain, but enough that wakes me up.  These days, I don't know how to measure pain, as I am sure my tolerance is pretty high of late.  I have noticed that some days I feel like I am walking on air.  It's surreal.  It's like the pain was so intense that it just held me down and as it lightens, I feel so light!

Another point to note is that one day last week I lost 5 pounds in one day.  That's not normal for me, at all.  It was the first day I felt sort of "out of body" and the best I can explain it is that the inflammation was going down because the drugs are finally kicking in.  I have been bloated for 20 years.  I know that sounds crazy, but with all my GI issues, my stomach is always puffy or bloated.  The first time I ever felt not-bloated was when I did the Candida Diet.  It was remarkable.  That day, the bloating went down, I felt better, I lost weight.  My guess is all the water-retention that is caused by inflammation went away that day.  I'll take it!

SO...the "darn it" part is that I am not out of the woods.  I went to JLS' baseball party for an hour last night and ate a sliver of pizza. I mean a SLIVER.  I chewed well, but MAN it tasted good! :)  By bedtime it was the heartburn and pain, resulting in a pain pill (which I haven't taken in days), and up most of the night.  UGH. The pain is always in my lower right quadrant which makes me SO nervous that it is a more permanent stricture that won't be helped by the drugs.

I am getting more energy every day, wearing myself out in a good way.  I have biked to school 3 times now and it feels SO good!  I drop to the floor when I get home, but it's just the push I need to build my endurance.  I am skipping naps, which is actually hard to do.  But by doing that, I am ultimately helping myself sleep better at night....most nights.

Definitely measurable improvements, definitely still a ways to go.  BUT, what an incredible miracle to be sitting here today typing with NO pain in this moment.  A far cry from where I was a month ago.  I actually get teary thinking, "What if?"  Where would I be without these meds?  Would I survive?  It actually really gets me choked up to think about and very appreciative of Humira, whether its my first choice or not.  It's allowing me a quality of life that I was no where close to having 5 weeks ago!

God is good.  ALL the time!

Four Days and Counting!

In four days, I have taken one pain pill.  HUGE accomplishment!  I can't describe the relief in pain any other way than I feel like I am dancing on air.  And, Lord knows, I am not a dancer! :)  I feel like a huge burden is being lifted from me and I can feel my world lightening up.  PTL!

The only time I took a pain pill was after I ate something with bread.  I know I shouldn't, but it also helps me gauge the inflammation.  It's really the only way to measure improvement without looking inside of me.  I wasn't doubled over, it wasn't excruciating, but it was enough that I couldn't sleep...and I really wanted to sleep!

Yesterday, we had a big day and I was bracing for it.  First and foremost, I took my second round of shots.  I was up with Babe and JBS early, so thought I should shoot myself with an adult around...just in case.  I am thrilled knowing more medicine is at work in me now.

Babe and I had to split up with the boys and in a big way for someone who really hasn't been allowed to drive until this week.  Babe left at 5:30am to take JBS on his Boy Scout Camping trip while I stayed home to take JLS to his baseball game with WHS.  We left for that at 11am.  After the game, the plan was to drive JLS one hour to the campout so he could camp, too.  Then, WHS and I were to return home to sleep in our cozy beds and relax.  It all worked, dropped JLS off and as soon as we hit the front gate of the camp, Babe called to say that JLS was throwing up.  UGH!  I had bragged to my friends at the BS Camp about putting WHS to bed early and having the night to myself to stay up late with just me and my laptop.  I was SO excited.  But, I couldn't leave JLS sick in a tent and I couldn't leave Babe alone with JLS sick in a tent.  So, we returned to get JLS.  Poor guy.

The GPS told me our return home would be 50 minutes, which turned into 1 1/2 hours because of the traffic from the Renaissance Festival.  Stand still traffic.  JLS' tummy hurt and I was dreading vomit in the car and WHS kept telling me he had to poop and there were no bathrooms in site.  It was a LONG trip home.  We stumbled in the house, sent the boys to the bath and an AMAZING friend had left a complete meal on our door step.  The timing couldn't have been better.  I cried. I know it sounds crazy, but that day completely and utterly exhausted me physically.  I am still such a lightweight and I can't stand it!  I shoved food in the boys' faces and put WHS to bed by 7:15pm  {hallelujah!} I let JLS sleep on a palette on my floor and I crashed.  There were no up late accomplishments, no laptop. I fell into bed after a hot bath and was out by 8:30pm.

Pha-ew.  Today is a new day!  And hopefully another day without pain and WITH healing.

Plugging Along!

Thank you so much for all the sweet messages asking how today has gone.  The last 6 weeks have been surreal.  In the midst of great pain, I was continuously made completely aware at how blessed we are.  How many people care that my family functions and eats and sleeps.  The countless cards that arrived when I needed them most.  I am still in awe of it and so so appreciative and feel so loved and taken care of.  Thank you.  Thank you.

So...Day 3 of no real pain.  THAT hasn't happened in weeks...months, in fact...possibly years.  I still get a shooting pain at times, or a dull pain for a few moments, but nothing that I can't handle.  No anxiety today....and I hope never again.  I did eat some bread today, which I typically have to avoid, but I always want to push a little too far.  So far, so good.  The real test will be at 3am.  Not sure why, but that is always the telling time.

Another good sign.  I actually got a few things accomplished around my house today.  Not big things and most would think they were nothing.  However, I have almost turned into my 8-year-old in that I find myself unable to function and staring off into the distance a lot.  I just don't know what the next step to take is...sometimes its thru the pain and sometimes it isn't.  It's a a feeling that my body can't do as much as I would like and it's telling me, "No!" and going on strike.  The first thing I accomplished was getting my records transferred from the doctor in Houston to my GI doctor here.  I fully recognize that UT Houston is the hubbub and all, but man, the patient care has been far from acceptable.  From stuck in their office for 5 hours, to calling every day for 2 weeks to get the proper forms completed for my Humira and this week calling EVERY day to get a refill on my prednisone.  I didn't want it, but you can't just quit steroids.  I don't know if they are too big, if its the doctor, or the nurse.  Either way, I want to run into Dr. Dural's open arms and tell him I am home again!

The next accomplishment, and it was an accomplishment, was getting the Houston doctor's assistant on the phone to instruct me HOW to wean off the prednisone.  I know I am not completely ready, but I also know it will take some time to come off of it.  I am tired of being irritable and puffy.  So, as of tomorrow, I will start the weaning and it will take 2 months from the dose I am on now.  At least the end is in sight!

The other good news is that transferring my Humira from our old insurance to our brand new insurance was as easy a pie!  I called yesterday to initiate the process and they called today to confirm.  I didn't have to do a thing.  While I already have my 2nd round of shots for tomorrow in my fridge, the new dose will arrive next Tuesday, in plenty of time for Round 3.  Even better, they confirmed that this ridiculously expensive drug will continue to be $5 each shot for the first year.  I reluctantly asked what it would be if I didn't have this special Humira card and she said, "$35."  Amazing.  Kudos to our new insurance.  I hope it lasts...

Here is to a good night's sleep...even thru 3am.  Fingers crossed and prayers said, I am off to bed!

Trying Not to Be Cynical...

I have had TWO days in a row that have been relatively good!  I don't think that has happened, yet, and I am trying not to expect anything but the same for tomorrow.  It's hard, though.  I like to think I am pretty rational and after battling Crohn's for 15 years, I have a pretty high pain tolerance.  However, the intensity and longevity of the pain in the last month has been so great that I have found myself in moments of real anxiety fearing the pain.  If I feel a twinge coming on, even if it's not really bad yet, I start to get the shakes and sweats and my heart starts racing.  I feel real panicky and I get fidgety.  Anyone want to diagnose me?  I am guessing its my fear of the intense pain, as too many times, my pain pills couldn't touch it.  A bout of anxiety, for sure.  It's not a good feeling.  I have great sympathy for anyone who struggles with true anxiety issues.

The good news is yesterday was pretty good.  I pushed myself a little harder energy-wise and didn't push myself food-wise.  The combination was a good one.  By 3:30pm I was ready for bed and didn't allow myself to nap until I dropped dead in bed at 8:30pm.  I wasn't sure I would make it, as mentioned above.  When I get over-tired I start getting shooting pains in my lower abdomen.  I don't know why, but it's always when it's time for nap or time for bed.  Admittedly, I took a pain pill at bedtime, but it was the best night sleep I have had in a month.  I was tired, I slept hard and it felt good :) Wonderful.

The crazy part about yesterday, which sounds absolutely ludicrous, is that I bought a darling stationery company... Write Away.  It's a fun story, but the closing was supposed to take place right as my health went terribly south.  We rescheduled twice, which I can't say enough for the kindness and understanding of the girls who sold it to me.  And yesterday was the day.  I used to laugh that my best exercise has become riding my kids to school on the bike, as that has been about all I could handle recently.  Now, I wish I could do that!  Getting showered and out the door to the lawyers office wore me slick!  I am thrilled, though, beyond words, that I didn't have anything to set me back in the moment.  It all went without a hitch and no one there new I was sick:)  (So if anyone reads this little blog, you can buy some really cute gifts for Christmas!:))

I somewhat expected today to have it's white flags, with all the activity yesterday, but here I am! I am still surviving on steroids which is starting to work to my advantage if I continue to feel OK.  They give me energy that I don't have on my own.  I was able to make it up to the school with WHS for JLS' 50's party and we survived.  I was able to work a little around the house, between rests, but it sure felt good to at least attempt to regain control of my house.  Still a long way to go...

I look forward to tomorrow, as all the boys are in school and I know it's a needed day of forced rest.  I don't want to take any more steps backward, only steps forward.  It's a bit ironic that the last time my doctors mandated forced rest on the couch, I started Tippie Toads from my laptop.  I was still on the couch!  Now, I bought a stationery business.  I can't take on anything more.  So, no more couch-rest!

As for the drugs, I take my second round on Saturday and am actually looking forward to it.  This time I only take two injections.  Then, I will continue with 1 injection every two weeks forever...or until there is a cure...{yes, please!}

And lastly, since Babe started a new job, we have new insurance since this fiasco began.  So, today, I initiated the transfer of the Humira to my insurance.  Gratefully, I already have my second dose in my fridge.  Surely...SURELY it cannot take as long as it did to get the first round.