This week just happens to be my in-between week, with only one doctor’s appointment scheduled and a few calls to the VA.
There were no appointments for GI, no shots needed, no follow-ups for consultations, and no blood work that I had to take care of this week for my Crohn’s disease and issues. This week was easy compared to the next few weeks coming up.
Saturday we had friends over and Philip and I hung up more Christmas lights on the house. Philip is in a very festive mood when it comes to decorating the house. (It looks amazing! Thanks, Babe!)
This week being the in-between for my loading dose infusions, I knew not to expect an overnight miracle, and I’ve suffered from more office work, more of the same Crohn’s issues, and more waiting for relief.
Oddly enough, it is also Crohn’s and Colitis Awareness week, so sharing information about Crohn’s disease is a necessity in this week’s post. Crohn’s Disease is SO much more than a bathroom disease, it is different from IBS, and there is so little knowledge available about these internal problems, with each person dealing with individual symptoms. We are still hoping for a cure as soon as possible. (Donate to Cure for IBD or read how my Crohn’s Journey began!)
Since I’m still taking the Imuran as a booster, now with the Remicade infusions, instead of getting a bi-weekly blood draw for liver and kidney panels, I will just get blood tests done on the infusion days to save time.
The next infusion for my loading doses will be next Friday, a week from today, and then another scheduled for early January. What a great way to bring in the new year…
After the last loading dose infusions, I will meet with my GI doctor, Dr. S, around a week later, and we will go from there. We will see how I feel, see how the Remicade is working, and see how my Crohn’s issues are at that point. I will be 7 weeks into the Remicade treatment by then.
So far, so good, with no reactions or side effects of the Remicade. Hallelujah!
I am still hopeful for relief, sooner than later I’d hope, but this week has been a doozy, somewhere in between order and chaos for my body.
The whole week was spent sore and tender all over. My entire body feels like one massive bruise as if I had someone beating me up all night, hurting on the outside as well as in. Even hugging Philip goodbye in the morning was almost too much to bear. I bet if you looked at me hard enough I would hurt, that’s just how tender my whole body feels. My skin and throat hurt, my legs ache, my stomach cramps, and my elbows throb. Hell, everything but my hair hurts. Which looks fabulous with fresh green color btw. Thank you, Manic Panic!
Either way, I’m sure my tender days are Crohn’s related, everything else seems to be.
I completely finished my communications degree this week!! I have no more classes with the communication program, but in order to complete the requirements for the Phoenix program, I have 6 courses left for my Journalism certificate in order to graduate in the spring.
I started my first course for journalism this week, and I can tell it’s a lot of information to take in, it will definitely be another hard course. But I am beyond anxious and excited to finish. Maybe we should go visit Phoenix and I can graduate there and walk in their ceremony? It’s a thought…
On Tuesday, I had a mental health therapy appointment at the VA, where we discussed grounding and PTSD, flashbacks and things I can do to be less stressed. We discussed triggers and avoidance, as well as facing problems and choosing not to react.
Dr. C suggested yoga, spin classes and things like that to help me think less and be less anxious, but if you know me, you know that I am not what you would call a calm person.
I fidget, I talk, I vent. I shake my legs and pick at my fingernails. I crack my knuckles and bones, and I can never sit still. My legs get so restless sometimes that Philip has to physically stop me from shaking them, and often, I am unaware I am even doing it.
I am a very hyper and antsy person. Mix that with chronic illness issues and I get pent up and stressed. Throw in some drama, and it’s a cocktail for disaster.
Instead of yoga, I suggested things like going to a gun range and shooting or roller derby, and he was taken aback and shocked. I could see on his face that those answers were not what he was expecting. (Note: I don’t even know how to roller skate, so that’s probably not going to happen anytime soon.)
On Wednesday, Philip got a haircut! I have been harassing him for weeks to let me cut it, as his hair was longer than mine! Once it gets to a certain length, it starts to bother him, it gets in his face and falls in his eyes, so he finally got the urge to lose the hair, and he decided to make my day.
I was cooking dinner and he came in to tell me he wanted his hair cut and I was ecstatic! We finished dinner quickly and I finally got to cut all that hair off. He looks so handsome with the short hair, it reminds me of our Navy time. His haircut is definitely a highlight of this week for me.
Thursday I got a call from the Veteran’s Choice Program, they had scheduled another appointment for my side-boob nerve pain, the appointment I mentioned before, the one that needed the mammogram and ultrasound before they would even see me for a consultation.
This appointment would be at the Comprehensive Breast Care Center, a few days after the mammogram and ultrasound I have to go to this upcoming week. I am nervous for that consult because the paperwork had a lot of stuff listed for approval, like biopsies, X-rays, and, needles. Like, what?! What exactly will this appointment entail? Fingers crossed needles are not needed.
I am still having the tenderness and sharp pains that show up unexpectedly and I am only taking one Gabapentin at night to avoid the drowsy drunk feeling. The pains have been coming more often, so perhaps I should strengthen the dose, but still not take as many as before. (See Remicade Day #1)
This week I have felt overwhelmingly tired, falling asleep in the car, on the couch, as early as 9 pm, but then I get a second wind and insomnia after midnight some nights. I wake throughout the night, up and down, up and down, waking with hot flashes, bowel pain, and, nausea that leads to more puking. That’s a new issue I am learning to deal with. It is NOT pleasant.
I get up in the night and I can’t fall back to sleep to save my life. My stomach will cramp, so that leads to office visits and legs falling asleep. It’s one big butterfly effect, with one thing leading to another problem, to another, to another, until I’m finally ready to go back to bed, sometimes in an hour or so, sometimes later.
On the plus side of the week, including Philip’s haircut, I ordered and received my new Erin Condren LifePlanner, making this year 2 that I have used her planners. It came with stickers and note cards, placed safely in a pretty box, with loads of extras that surprise you when you open it. (Use that link to save some $$ and order one)
The box contained an inspirational postcard that I used for the cover image of this blog, “Strive for progress, not for perfection”, and I felt it was absolutely perfect for the struggle I’m in. That, and the large sticker it came with reads “Be Thankful”, something I have been trying to do more of. Still a Bitter Betty, but I have my moments. Erin Condren knew just which quotes to send me. (Thank you!)
For the price, my planner is beyond beautiful and extremely useful. I find myself getting happy and giddy planning dates and organizing my appointments inside it, I love it so much. And the personalization, I mean, c’mon. It is absolutely my favorite thing. I like using pictures from the year, but some oldies but goodies get thrown in there, too.
Another geek moment this week happened when I ordered a new binder for my medical paperwork. I have kept everything for the past few years since my Crohn’s Journey began, and my binder was nearly filled to the max, spilling papers out when I opened the hoops inside. It literally had NO more room.
So, I ordered a 3-inch binder, and I got to transfer all of my records and organize them with all of my new information. My mental health therapist keeps giving me printed out chapters of books to read, so I have more than enough space to hold my new study material and all my files in this new MASSIVE binder. You can see just how big it is sitting on my desk. It is HUGE. (That’s what she said? Binder is on the desk, center of photo)
I find it humorous and slightly sad that things like a planner and a new binder make me happy these days.
You know you have a chronic illness when you are ecstatic to organize your medical charts and write your appointments in your planner all neat and colorful. I sit with my heated blanket and I plan or write, with Bilbo by my side, as usual. I have so many appointments in the upcoming weeks that my new planner will get its money worth of use in just a few days.
I have already gone through and put everyone’s birthdays inside, with special holidays and anniversaries to remember for myself, like both of my butthole surgery anniversaries and my Crohn’s diagnosis anniversary. Sad, but true.
Another silver lining of the week, I made a cast iron cornbread for the first time. I know that’s not too important for some, but for me, my cast iron skillet has become a staple in my kitchen cookware, as I’ve used it almost every meal since I got it. I was pretty proud of myself at just how good it came out.
And lastly, like I hinted at earlier, I also refreshed my green hair this week, and it is quite gaudy with all of its emerald glory. It definitely grabs your attention and I adore it. It has to be my favorite color of all time, even more so than the red!
And, just to top the week off, I pierced my septum, too! I had worn a fake ring on it for MONTHS, just to see if I liked the look and feel of it, and I finally just bit the bullet and did it. The ring is tiny, not showy or too noticeable. Now, that makes 3 piercing in my nose, so I think I’ll stop there. 😊
Fun fact: guess what I got to do the night of the new piercing? I vomited out of my nose for the first time. It was beyond painful!😝
Thankfully there’s been more highlights than negativity this week, with no drama or maliciousness. Good weeks seem to be a rarity for my life, so I’ll take it. Next week will be more hectic, with the blood draw, the mammogram, the ultrasound, and, my 2nd Remicade infusion.
Fingers crossed for more good days to come because It Could Be Worse.
(Today’s post comes with Bilbo’s help, he’s been such a baby this week.)
Thank you for reading, and for keeping up with My Crohn’s Journey.
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And as always, any information you’d like to offer up about Remicade infusions or any of my struggles and issues, I have open ears and I’ll happily take any tips you have!
For those of you who are continuing to donate to the Cure for Crohn’s and Colitis, I encourage you to donate towards my team page with CURE for IBD – where 100% of the funds We raise will be allocated to IBD research for a cure. That’s right, 100%!
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