I have been hiding in my blanket fort again. So many things going through my head.
Musical things.
🎶 Itchy Itchy Scratchy Scratchy, ooh I got some down my backy… (No idea where that one originated, but I can hear my Grandpa singing it to me and picture myself at the lake, one of my calm, happy places)
🎶 I’m goin’ back to Cali…to Cali…to Cali (L.L. Cool J, early 90’s….back in the day, I remember cruising around in Shaye’s Toyota we called the “Little Brown Jug”. We used to have to park on a hill so he could push and I would pop the clutch to get it started. Another happy place). Why am I singing that one? Because I’m goin back to Cal-GARY.
Yup, going back to Calgary. Good thing my new year post was about being happy where you are right? So what happened? Well, if photos make you wiggly, turn away…
My chest:
My arm/wrist/hand:
Yup, this is where we are today with this Graft vs. Host Disease. I know this is going to sound like a very strange method of doing things to some, but with the GVHD coming and going so much, we needed to rule out a prescription allergy. Last week we stopped ALL medications to bring it on full blast, so doctors could get a better biopsy result. Well, I aim to please. I complied. Last week I dealt with Prednisone withdrawal, it was terrible, but I have never been so happy to hear “start back at 70mg”. That was Thursday. The itch and rash are worsening, but it’s ok because tomorrow I am seeing Dr Storek from Calgary at the Cross here in Edmonton to hopefully set up a new treatment regimen in Calgary. If he says leave today, I will go!!! I think I may pack a bag and take it with me to the appointment!
The thought of going back holds many scary thoughts. But I can do it. It’s obviously part of this process, so here in my blanket fort I am preparing myself. Preparing my kids. Not getting weaker, getting stronger. Like Southpaw before the big fight. If I kick the poop out of this then what’s left? Just me. Yup, that’s the goal here.
The treatment is called Photopheresis. I will get a line put in again for the next while, and they will take blood out, target T-Cells, and put it back. Basically calm things down. Right now, Christi’s stem cells have grafted, all is good, but now her cells are fighting harder than my body can handle. I tried telling her to tell them to calm down, that didn’t work. I also told her that we are grown ups now, we don’t need to fight like this anymore. She assured me of her sisterly love, but that didn’t work either, so here I am going back to Calgary.
Bring it. We’ve got this.
Peace and Love
Trish xo
Trish G 
I hope they can get rid of the graft versus host issue soon Trish! Sending hugs and strength to both you and your very uncomfortable body!
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Trisha, your posts always come along just when I need you most. I won’t go into detail about my past year, suffice to say its been the worst year of my life and not over yet. You are the inspiration that gets me through. I pray for you every day and I can’t thank you enough for sharing what I know is the darkest period of your life. You truly are my hero. xoxo
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Thank you Deb, so happy to hear my post can reach someone in a helpful way. I don’t know your struggle, but I do know that no matter how many times things come up, my grandma always said “keep your head up and walk on”. You can do that, I know because I found it in me to do that. Keep your head up Deb, hang in there. Walk on, xo
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Praying for quick resolve. We have never met but do have mutual friends and that is how our paths crossed. You are a tower of strength to so many. I am truly grateful that you are sharing your journey with us and in some small way I hope that it is therapeutic doing so. We seem to find strength in the most unlikly places and ways. Hugs to you and all your family, Trish. 🙏🏼🙏🏼
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Oh Trish, since I have eczema, severe allergies and other body issues and nearly go crazy from itch (especially at night) every day, I sympathize with you whole heartedly. You feel as if you are going out of your mind and the itch just keeps on itching. Hang in there – you have come so far. I think about you each time I see your hubby on TV and am glad you have such a strong person for support. I will keep you in my prayers. Love and Blessings, Maureen
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Trish, you are a true inspiration! I hope they can get the GVHD under control quickly and you can be comfortable once again. Prayers.
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Hi Trish, I will join Shaye and other in praying that God will completely heal you.
Gerry
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Hi Trish:
You are an amazing soul and Deb is blessed to have you as her friend. You have gone through so much already and you are still amongst the living……God still has things for you to do in this life. Know that He will continue to be with you in this long, difficult journey you have been given in this life. One day all of us who know Him will have perfect bodies and we can be with Him forever. But for now some of us have to struggle with illness beyond comprehension. I think all families have to deal with something, physical, mentally, emotionally, spiritually……our faith and hope will get us through. Some days are harder than others. Today might not be a good day, but we can find something good in today.
We will continue to pray for you and your family.
Love
Barry and Shirley
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Trish, I am a follower of your blog and my heart goes out to you. You are so strong…..you have my sympathy, my admiration, my prayers! This has been a long hard fight and you have managed somehow to keep your spirits up and your hope alive! You will get through this….I know it.
That is one itchy-looking rash…..I hope it soon disappears.
I cry tears of sadness, joy and sympathy every time I read your blog.
Love to you and your family.
Jane
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Hi Trish so sorry to hear your going threw a rough time again.God doesn’t give us any more then we can handle.You are a very strong person and will get through this ,with all the love and prayers behind you things will turn up very good for you.You have a loving husband and children be strong,l know what your thinking how would they know what lam going through and yes we don’t know,praying for you you will always be on my mind,l still know you will one day do the happy dance.One day l would love to meet you in person ,l feel like your already part of my life some how be strong
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Still praying for you Trish,try and stay positive I know it can be hard at times take care
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As Deb said your posts come at a perfect time making any of our struggles seem small and makes me so much more appreciative that mine are as big as yours. You sound like an awesome woman with an even awesomer Outlook…hang in there Trish things will settle down and you’ll be back with your family real quick. Again thanks for your posts and for sharing with us. Hugs to you Shaye and your family. 🤗
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Dear Trish: My prayers are with you and your family. I wish I could take the rash and make you well. Your blogs have made me stronger ( I didn’t think that possible) for things going on in my life, that nothing can be done. This has made your family strong also. Am so happy that it has. The children need this strength you are showing. I am asking thr good Lord to put His arms around all of you and His Angels watch over all. My prayers are with you each day.
My setting down is getting betteer. 🙂
Until next time. Love you and stay safe. ❤
Polly
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Keep up the fight,,,,,Prayers for you every day,,,,,We all love you,,,(((((((((Hugs)))))))))
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Wow…so many things you have to go thru…I’m so sorry. You seem to do your best. Keep fighting. So many prayers are being said for you and your family. I truly wish you much success this week in Calgary.
You do “got this”!!
hugs,
Kim
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It’s so hard to understand that Prednisone is such a commonly used drug when it has so many crazy side effects. I’ve seen it first hand in my Dad. It is definitely not an easy process to deal with. I am always so amazed that you have a great outlook on everything and all the hurdles you have jumped and conquered. I’ve had my own trials that started over a year ago and are ongoing and I definitely can’t say I’ve had a positive outlook. Reading about your journey through this and through your eyes helps me put my trials in perspective and view my world in a different way. Thank you so much for that.
Praying for you and your awesome graft cells to kick some butt and get everything back in check. As everyone else has said, you definitely “got this!”.
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