I want to apologize to you all for not posting the past couple of weeks. I didn’t want to do a post because I wasn’t feeling true or all that hopeful, and I didn’t want to force it.
When it rains, it pours and usually for someone with an autoimmune disease, it flares.
I had a family emergency during week 6, and week 7 started experiencing some nasty symptoms that hadn’t appeared since May. When I saw the blood, I immediately started sobbing. No, no, no, no, no. This isn’t happening again. I sat on the bathroom floor and cried while my dog licked the tears falling from my face. I was crying so hard my fiance thought I was laughing. I came out of the bathroom and he saw my face and jumped up. I couldn’t speak enough to tell him what was wrong between crying so hard,so he just held me for a while until I could get it out.
I wasn’t prepared for that type of reaction from myself. I can’t remember the last time I cried that hard. the memories of being in the hospital came flooding back. All the pokes, the unanswered questions, the pain, the steroids, the side effects. I wasn’t ready to go through all that trial and error again. To miss out on the world again.
While I blabbered on about everything going through my head my fiancé reminded me to stop and just take it one step at a time. My next infusion was in 5 days. Maybe it’s just triggered from the stress of the previous week and being so close to refill time. I wasn’t in a lot of pain. No urgency. Just blood. Terrifying, but just blood.
So, I’m taking it day by day. I’m praying. A lot. I got my remicade infusion on Friday, and the blood has diminished, though not completely gone yet. But I’m good. I’m taking time away, and I’m taking care of myself. I’m getting my hope back. Spark by spark.
For the next two weeks I have nothing planned but sunshine and relaxation. No work. No negativitiy. No anxious thoughts are allowed. Only love, and gratitude, and laughter are welcome here.
I’m going to be writing down three grateful moments everyday, to keep myself accountable. I’ll post them for you on Sunday. I need to hit the refresh button over here so I can keep bringing the hope to all of you. I’ll be checking in on twitter and instagram,if you need anything at all. Thanks for your support. You all mean the world to me.
3 thoughts on “Sparking Hope Again”
Linked from your IG feed. Looking forward to following your journey. I also have colitis – since 2007. It’s been quite a journey! I found it took about a day to experience positive effects of Remicade but about a year till all symptoms were gone. I hope you feel better after your infusion! Take care.
Thank you Lee-anne!! How are you feeling now? Still on remicade? I really appreciate the insight. I’m feeling much better now, it was just so scary the first time the GI bleeding had come back, I hadn’t seen it since my first infusion in May.
I’ve been on Remicade twice. The first time was 2007-2011. Then our insurance changed and I could no longer receive it. So for 2 years I was med-free. It was terrific for the first year but symptoms started to reappear. I tried to manage it with diet, and with the help of a terrific naturopath. But eventually it got out of hand. I was admitted to hospital in a horrible flare and my new specialist changed my diagnosis and I could receive coverage for Remicade again. That was one year ago. I am in total remission again and loving life :). I am careful with my diet and make sure I always take lots of VitD which I know helps. With much trial and error and many attempts at staying the course with elimination diets I have been able to narrow down my trigger foods. Most grains. All sugars. Vinegar. Tomatoes. Most processed foods with more than a couple of ingredients. Last year I discovered that the diet I had settled on was very similar to the autoimmune protocol diet. This hasn’t really changed the way I eat, but it has certainly given me back the joy of cookbook surfing! It takes a lot of time and discipline to eat clean but I’m always reminded why I do this when I stray! I have come to a place where I am thankful for everything colitis has given me and accepting of the path my life has taken even though the life I dreamed of feels like a loss. I am so glad you are feeling better now.