Shingles...

Life since starting the Prednisone and Remicade has been A TRUE ADVENTURE. haha The title of this blog rings true once again. Having the relief from my symptoms has been wonderful and the energy I have been given has been life changing. I honestly don't remember the last time I felt so joyful and so capable of doing absolutely everything I set my mind to. Whether that is getting the dishes done, or running every single errand in one day with my 2 year old on my hip. haha I have felt unstoppable, to the point where I have shed tears of joy. haha But then there are the downsides...not being able to sleep at night, having emotional breakdowns, moon face (trying to avoid sodium as much as possible), swelling in my stomach, and then my increase in appetite that causes weight gain. The pros were outweighing the cons for a while, but I am definitely anxious to finally be off the steroids and just manage with the Remicade.

We went camping last weekend and it was so much fun. So glad we were able to go. But a couple days before, I started feeling some crazy back pain and groin pain. I thought that maybe I had pulled something while doing squats..(yes, I had all the energy in the world to do squats and get my body moving more) and maybe I pushed my body too hard. SO i didn't think too much of it. The back pain persisted and got worse by the end of our camping trip. I just figured I probably should go to the chiropractor soon.

When we got back from camping, I took a shower and noticed in the bathroom mirror some kind of rash on my lower back. Just a couple break outs that looked like it could have been bug bites. They didn't itch and we did just go camping. Once again, didn't think much of it. The next day, I went and had my Remicade infusion. I truly felt so exhausted when I got there, and my back was really hurting. I completely forgot I even had a rash on my back. Still didn't put any of this together. I slept the entire chemo session. The kind of sleep where I wake up embarrassed knowing my mouth was wide open and there was a chance I had drool on my pillow. haha I then took another nap at home when I got back. I haven't slept like that in a while, especially being on Prednisone. By that night, I discovered more rash on the right side of my groin area, and this time, it was a bubbling rash. Did not look good and I knew I needed to be concerned. I started putting the pain and the rash together thinking they must be related. Sent pictures to my mom who told me she is pretty sure it is SHINGLES. I just couldn't believe it. What a pain in the butt, literally. The burning sensation just started to escalate over night as well as the pain. Contacted my gastro doc the next day who told me that if we had known I had shingles, he would have had me wait until after it healed for me to receive the next infusion. OH WELL. It is what it is. He prescribed me a 7 day antiviral drug to help fight it.

 I was in so much pain the last couple of days. It felt like back labor and contractions. I could barely get around or even pick something up off the floor. The rash was nasty and made me not want to wear anything at all. I have just been wearing loose dresses. Grateful the location of it all is where I can easily keep it covered. My daughter never received the chicken pox vaccine so that has been a concern of ours. So far she hasn't shown any symptoms of getting the chicken pox. Crossing our fingers that her immune system is strong enough to overcome any contact she may have. Yesterday, I finally woke up without being in major pain. I am still achy and rash is still bubbling in a lot of places, but I can tell I am finding some healing.

Even though all of this has been super hard, I have truly felt so much love and comfort. My husband gave me a blessing on the night where I felt so defeated, Tuesday night. I could barely move because of the pain and didn't see how I was going to get through the next day, let alone the night. I did't know how I was going to take care of Scarlett the next day. I woke up the next morning and a friend of mine from church texted me offering to take Scarlett of my hands. I took her offer and Scarlett was able to play while I could rest and not stress about entertaining her. I was able to talk on the phone with my siblings and received a special edible arrangement from my sister. It was all so nice and meant a lot to me. When Scarlett was brought back home, she went right down for a nap and slept for at least 3 hours. It was such a tender mercy. My mom brought us dinner that night and then when bed time came, Scarlett went right down and even slept in the next morning. She is usually a great sleeper but since camping, her routine was a little off. BUT I had no stress through it all, so much peace, and I could just feel angels around me, comforting me every step of the way. I feel like Scarlett even was comforted. She has been so loving to me and I just couldn't be more grateful for every tender mercy that has come my way. I know without a doubt that Heavenly Father is aware of me.

The pain has subsided substantially since yesterday, so I am grateful for that as well. It is all just a waiting game at this point for this rash to heal. I haven't left the house in days. Feeling depressed and bored tonight as my husband and Scarlett head off to a family birthday swim party. Wish I could have gone with them. but as I have been sitting here, I wanted to write out my goals for the rest of the year. I am eager for change and feel the need to write them out so it is easier for me to stay positive. In order:

Goal #1: Finish up the 7 day antibiotics and overcome the Shingles...hoping I am already on the mend. I have 3.5 more days of pills. Really don't want to take another round of the meds. I am so done being sick and having something holding me back from being able to enjoy life.

Goal #2: Get off Prednisone---I have 2.5 weeks left of it. I believe June 25th is my last day.
Getting off Prednisone will get rid of my moon face, lower my appetite, will be one less heavy drug in my system, and will let me see how much the Remicade is actually working for me at this point. It will bring me a lot of peace being off of it.

Goal #3: Lose the weight I have gained from the Prednisone. Every two years we go to a family reunion in Kentucky and every time we go, I am on Prednisone and feel so self conscious of the way I look. I am sick of being there while not feeling confident in my own skin. Just want to be able to have fun and not worry about the extra swelling built up everywhere and the worries of of my health on my shoulders. Want to not stress about being in a bathing suit this summer either. Hopefully by the time we head to Kentucky, I can get rid of all the extra swelling and weight by eating healthy and exercising in some way.

Goal #4: Have a colonoscopy. I HATE colonoscopies but I have to have it done just to make sure things are healing enough for me to plan ahead with no added procedures, to where I can move on to goal number five. As much as I want to skip this altogether, I have to overcome the discomfort of it all and get it over with, praying for good results.

Goal #5: Get pregnant with baby number 2. I am so tired of waiting and since Scarlett is already 2 years old, I am soooo anxious to be able to get pregnant sooner rather than later so there isn't a horrendous age gap between her and the next one. She is so ready to be a big sister and the guilt has really gotten to me. I am curious to see how my pregnancy will go while on the Remicade. My first pregnancy was so hard on me and postpartum was tough as well. This will be a whole new experience for me this time around. Nerve racking a little but I am trying to stay hopeful and have faith that everything will work out.

Goal #6: Only receive Remicade every 8 weeks. I am hoping that by eating my whole food plant based diet, it will allow me to go up to 8 weeks rather than 6 weeks. Last time I was on Remicade, I couldn't go longer than 6 weeks and I hated that. I wonder if it is possible to go longer than 8 weeks. May be something I can talk to my doctor about, cause if that is so....I'll be adding that to my list of goals.

There you have it. I am ready for my Crohn's disease to take a back seat and not control my life.