Filed under: Crohn's flare
I needed two miracles, one small, one big. I got the first one this morning, for which I am infinitely grateful: I was first on the list and got a PCC line (”pick”) nurse installing my PCC line first thing this morning. This means that for the first time in a month, via tube now, I can get full and complete nutrition and my body can recover that way.
The second is much dicier. Tomorrow is the day, after the requisite two week interval, for my second Humira dose. It will be two epipens’ worth; the first dose was four epipens, next those two tomorrow, then I am to have one every other week after that forevermore.
I desperately need tomorrow’s dose to work. Really work. If it does not, I have to have my colon out and will have a long hard recovery from that, and once you cut into a Crohn’s patient, there are many more surgeries later over the years.
If that Humira takes, I can avoid all of that and be home free.
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Sending all with all my heart that the best possible outcomes occurs.
{{{Alison}}}
Comment by Diana Troldahl 01.26.09 @ 4:18 pmDoing little flip-flops of joy tempered with medication-dependent reality. Good thoughts, energy, and prayers are on their way from us both.
Comment by Kevin S 01.26.09 @ 4:24 pmI’m waving dpns (sending good knitting energy and prayers) for you that this dose works. Crohn’s is a wicked thing, and I hope you never have to have that surgery!
Comment by Helen 01.26.09 @ 4:31 pmMore prayers. It’s all I can offer
Comment by shadylady1216 01.26.09 @ 4:36 pmum. Ok, I think we’ve hit the Going To Sing Serious Campfire Songs.
Once I dreamt of magic and also some pleasant things
LIke little tiny rainbos and daisies on a chain
Sunshine in teh rain and snow on a summer’s day
But none we ever answered until you came my way
Now I have my magic, my daisies rainbows too
Along with pleasant memories of tiems I spent with you
And as I see these little thing appear inside my mind
No greater gift of love could anyone ever find
I know now believe that deep within my heart
the distance nor the time between cannot keep us apart
The rainbows and the daisies are little things, that’s true
My heart will ever be content now that I’m friends with you
Once I dreamt of magic and also some pleasant things
LIke little tiny rainbos and daisies on a chain
Sunshine in teh rain and snow on a summer’s day
But none we ever answered until you came my way
Shadylady, I can’t thank you and everybody enough. Prayers are huge.
Comment by AlisonH 01.26.09 @ 4:42 pmmany more prayers for your miracle
Comment by grace 01.26.09 @ 4:45 pmLots of love and healing wishes coming your way. I’m hoping the Humira works for you as the Remicade has for me.
(big huge hugs)
Kelli
ok going into overdrive on the make the Humira work – and work good and fast prayers…
Comment by rho 01.26.09 @ 5:00 pmIt’s not often that a nurse finds a patient thrilled to get a PCC line. But then, most patients aren’t as well educated about their disease process as you.
Hugs and prayers keep coming your way!
Comment by Barbara-Kay 01.26.09 @ 5:13 pmAlison: You will be the first one I pray for tonight when I say my prayers. Tomorrow is an important day for you and the Humira drug and I will pray that the Humira dose is able to do its job tomorrow and that you are indeed home free. Hugs Bonnie
Comment by Bonnie 01.26.09 @ 5:31 pmPraying for a miracle, and sending you ever so much love.
Lucy says “Reh! Reh! Reh!” Which means “red”, and you get to spend a heck of a lot longer hanging around and listening to my stories about this crazy little girl, so don’t you get any funny ideas in your head about anything other than that Humira working so well and so fast that your silly old Crohn’s won’t knew what hit it.
Comment by Kristine 01.26.09 @ 5:35 pmMy family received our own little miracle last week, I hope and pray that you find yours too. I’ll be praying for you.
Comment by Bev 01.26.09 @ 5:35 pmHi Alison, hang in there! Lots of people praying daily for you. I’m sure you’ve researched everything under the sun for Chrohn’s and you probably don’t want to hear another “suggestion”…but have you read ? He was very, very sick with it and through mostly dietary changes, he healed himself. Maybe Richard could pick it up and once you get stronger and out of the woods,you could use it as a motivator to look towards a future of healing!
Blessings,
Lisa
Alison speaking here: thank you, I appreciate the thought, but I can’t let his name on my blog. There is a medical condition that causes people to eat dirt. He sells his dirt as a cure, and he means well but I feel he harms patients. I can’t let my blog give him any more publicity.
Comment by Lisa 01.26.09 @ 5:39 pmHumira worked a miracle for me and I’m sure it will do the same for you. Your first dose worked really well, considering how bad you were and with the next dose on top of the first? And with you getting actual nutrition to back it up? And all of us out here praying for you? It’ll work.
Big hugs.
Comment by Lene 01.26.09 @ 5:41 pmI will make tomorrow’s prayers on your behalf very specific.
Comment by Laura 01.26.09 @ 5:53 pmSending more prayers for you Alison. I will be thinking of you tomorrow as you receive your second dose of the Humira and be praying that it will make a difference.
Comment by Leslie 01.26.09 @ 5:57 pmThe Humira WILL work! It has to! I’m sending every good thought I can muster over to the West Coast!!
**HUGS**
Fingers, toes, and knitting needles crossed that it works!
Comment by Qutecowgirl 01.26.09 @ 6:06 pmAlison my prayers as always are with you. I hope the Humira will work and that you’ll begin to heal. Much love coming your way from here in NY
Comment by Eileen 01.26.09 @ 6:09 pmOh, Alison, I am continuing to pray for your miracle. You have been through so much. May God bless and help you thorugh this very difficult illness.
Hugs,
Pam
Comment by Pam Alexander 01.26.09 @ 6:10 pmHey Sweetie!
I’m thinking of you, pulling for you, and pulling for that darned Humira, too!
Love,
Annie
You continue to be in my thoughts and prayers, my dear friend! I do hope the Humira really kicks butt in the best possible way. Hang in there. Peace and blessings and much love, and many thanks again to Richard for keeping us all updated when you don’t feel up to writing. (((((HUGS))))) to you all.
Comment by Paula 01.26.09 @ 6:33 pmMiracles surely happen! The Lord does big, miraculous things, and I’m praying and believing for you.
Give her an H, give her a U, give her an M, I, R, A and make it W.O.R.K.! Whew, haven’t cheered like that since I was a teen.
In all seriousness, Dale and I are both still praying for your complete recovery and hope the Humira does what it’s meant to do for you. I know the sustenance you’re receiving from the PCC line will help your body accept the Humira.
{{{{{{{Alison}}}}}}}
Comment by Shelly H 01.26.09 @ 6:44 pmI believe that God will grant you that miracle tomorrow. I, and many others, will pray for you tonight, and tomorrow, and however, long it takes. Hang in there.
Hugs from Vermont!
Oh, Alison, I will fast and pray that tomorrow’s dose will work. We do not want to have them start doing surgery if it can be avoided. Prayers and positive thoughts coming your way.
Comment by Sherry in Idaho 01.26.09 @ 7:25 pmI have been thinking of you often, and will pray for tomorrow to be a good day. Keep getting stronger everyday. You have to make it to Indiana/Kentucky some day.
Comment by sonya 01.26.09 @ 7:34 pmsaying prayers for you!
Comment by jackie 01.26.09 @ 7:42 pmHooray for nutrition. however you hav eto get it. You can’t heal without energy which means you need food! Or energy liquid. Whatever you like to call it. With the power of food and the healing of Humira, you can do it!
I am also sending healing vibes your way. *knit, knit, purl, purl, knit, knit, purl, purl, Repeat from * until healing accomplished
Comment by Carol 01.26.09 @ 7:57 pmSending prayers for that miracle and many others.
XO
Comment by (formerly) no-blog-rachel 01.26.09 @ 8:21 pm*hug* – yumm – so glad your body is willing to deal with things that way, and *yeah* – here’s some more prayers to help the Humira succeed
Comment by Mary 01.26.09 @ 8:41 pmPraying for a miracle for you. Praying that the nutrition helps and the Humira does its part. Good to be in the loving hands of good workers. You are amazing in your focus on helping others while you are so much in need yourself. May God Bless you with every breath you take.
Love you!
Karen {{{{{{Alison}}}}}} (& Hi to Mom & Richard)
If it takes miracles — big or small– so be it. Many, many folk praying for this to work, including me.
Comment by Don Meyer 01.26.09 @ 9:25 pmIf anyone deserves a couple of miracles right about now I believe it is YOU! Sending good thoughts your way for a successful round of Humira.
Comment by Diane in Northern CA 01.26.09 @ 9:30 pmAbout the Humira working, As Captain Picard would say, MAKE IT SO!!! Isn’t that what AMEN means too? And the Beatles would say, LET IT BE!. However God hears it, Please God, let the Humira heal Alison!!! AMEN
Hang in there dear Alison. I’m glad you’re finally getting some nutrition. You need all the strength you can get. Better late than never. I hope tomorrow is a really good day!
Love & Hugs & Prayers,
Gretchen
Well, this PICC nurse is hoping and praying. Call me if you need me. Any hope you can go home on TPN? ( Yes I know- they changed the name to PPN- but I’m old. It’s still the ER for me, too, not the ED)
Comment by Laura 01.26.09 @ 10:15 pmme agin. My DH just emailed a prayer to Jerusalum, to be tucked into the Wall for you.
Comment by Laura 01.26.09 @ 10:18 pmContinuing to pray for you daily, Alison, and especially for tomorrow. Thanks to you and your DH for all the updates.
Comment by Ruth in So. MD 01.26.09 @ 10:34 pmWill put that new prayer point to good use. Enjoy your eating-free nutrition.
Comment by Ruth 01.26.09 @ 11:06 pmStorming heaven. I will be praying all day tomorrow as I go about my day.
Comment by Kit 01.26.09 @ 11:13 pmEverything is a miracle. Miracles happen every day. You aren’t asking for the impossible. Rest and stay hopeful.
Comment by LynnM 01.27.09 @ 12:15 amI came across your blog via someone elses and have been popping by for the last few weeks to see how you are doing. I have had colitis since I was a teenager and have been suffering quite badly for the last year but your account of your illness has made me realise I am not that badly off at all and I am trying to feel less sorry for myself! I wish you well with your treatment and hope it means you avoid the operation. Sue.
Comment by sue green 01.27.09 @ 3:10 amOkay, the biggest prayer yet! Like eveyone else that is all I can do but I wish I could do more.
Comment by Vicki 01.27.09 @ 3:19 amPrayers and positive thoughts being sent to the big Man for you.
Comment by Amanda 01.27.09 @ 4:00 amAlison, I read something similar to Lisa’s comment in today’s NYTimes science section. Of course, it sounds like you ate plenty of dirt for free as a child playing in nature! Your way was cheaper and more fun. I can’t wait for you to get better to be able to share more of those stories with us.
Comment by LynnM 01.27.09 @ 4:59 amIt will take. That’s all there is to it because I don’t know how to knit a new colon…
Comment by afton 01.27.09 @ 5:20 amYou are forever in the continuous stream of healing thoughts and prayers from me. and yes, as LynnM wrote, miracles happen everyday.
XOXOX
Sending all my prayers and good wishes for tomorrow. May the Lord bless you and keep you safe!
Comment by Sue J. 01.27.09 @ 6:15 amI didn’t see this before bed last night so am getting it on Tuesday morning — hopefully rounds are over and you will have received your dose.
Count me in. I’m defintitely on the team praying for that miracle to happen.
But I want to state here, in front of witnesses, once and for all, while we are both alert and awake: I am so tremendously glad and honored that I got to meet you in this lifetime, Alison. You have taught me and are continuing to teach me a great number of things about caring, loving, understanding, listening, reaching out, praying, being there…I could go on. And of course I’m glad there’s knitting, too.
Much, much love, and hugs. Thank you, and thank you to everyone who is taking care of you.
Comment by karin 01.27.09 @ 6:28 am*soft hugs* and love. Hope things go well today with the Humira. And yay! nutrients!
I didn’t make the blog run last night – East Coast time vs West coast is several hours…..however, I am trusting Humira to be the miracle drug you need that it has been for me. I take a dose every week and it has helped me so much. Prayers have already been said for you this morning. Trusting God to provide the answer.
Comment by Rena 01.27.09 @ 6:40 amPrayers, hope, and healing vibes coming your way, from me and my knitting friends!
Pegi
Comment by Pegi 01.27.09 @ 6:56 amI’ve come to your blog through Natania’s blog. I too suffer from this awful disease. I’m on Humira and have been for the last 10 weeks. I really hope that you see some improvement so that you don’t have to have your colon out. My thoughts and prayers are with you.
Comment by RC 01.27.09 @ 8:27 amThinking good thoughts about the Humira. It HAS to work. We all need it to work for you…
Comment by Sandra 01.27.09 @ 9:14 amWe have your back Alison…just relax and let the drugs and nutrition work…
Comment by Betsy 01.27.09 @ 9:41 amAs LynnM pointed out, your mother let you grow up playing outside, getting filthy, eating dirt, and falling into dirty water. In other words, you mother did everything she could to give you a healthy immune system. You’ve had problems, but now good medical care, plus being raised with exercise, dirt, and love will carry you through!
Comment by Laura 01.27.09 @ 10:20 amMy prayers and well wishes are with you. May the Humira work as needed and you be able to make further progress on your recovery.
{{{HUGS, SMILES, & PRAYERS}}}
Comment by TripletMom 01.27.09 @ 10:44 amI hope the infusion is going mor smoothly this time. (with embarrassed shrug)I get IVIG, and every dose starts with Benadryl and Tylenol to prevent a reaction. You are doing this, right? I hate to think you are using the Epipen before trying simpler, and more comfortable, solutions. OK, I still feel sheepish for being so nosy, but I’m going to leave it in, and shrink off, embarrassed, and think good thoughts for you.
Comment by Kathy Sue 01.27.09 @ 10:53 amStill sitting (via the internet) by your side willing you to be well and telling you encouraging stories of my son’s miraculous recovery with Humira.
Comment by Marlene 01.27.09 @ 11:08 amI wish and hope you make a wonderful recovery very soon.
Comment by Matilda 01.27.09 @ 11:56 amAlison, my thoughts and prayers are with you and I will be thinking of you tomorrow and in the days to come and willing all the healing in the universe to come and reside in your body. *hugs*
Comment by Sophia 01.27.09 @ 1:13 pmAdding my, late, words of support in.
And as always thinking healing thoughts for you.
Tell Afton that a colon looks like a long skinny, wrinkly tube…think one of her socks, just smaller around and much longer–and just as colorful! *smirk*
Comment by Karen 01.27.09 @ 5:19 pmBeaming hugs and best wishes for an optimal outcome!! Glad you’re feeling better!
Comment by Ruby Louise 01.27.09 @ 6:59 pmLeave a comment
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