This week has not gone as planned.
Since last week, we had our fantasy football draft and I managed to get another week with 100% credit in my communications class.
Now with football back on, I’ll have to reschedule my homework days so I don’t miss the Sunday and Monday games or my Bengals. Who Dey!
I got some Humira goodies sent to me, like a cooler, with ice packs, for travelling with my pens or syringes, a sharps container for all of those needles I get to use, and, a practice injection pen. Pretty exciting and intimidating stuff here.
So, that’s the positives from this week. I shouldn’t complain, but this week was supposed to be more important and eventful for my Crohn’s journey.
If you go back to last week’s post, Humira, My New Friend, the blood tests and x-rays that I had taken to check for TB at the GI clinic were supposed to be back by Friday, and on the Monday “at the latest, for sure”, according to the doctor. But, because it’s the VA and like a military entity, I get to hurry up and wait. For nothing.
Around noon on Monday, when no one had called me about my test results returning, I logged online to MyHealtheVet, an online service that lets you look at your medical chart, and I saw that a few of my test had actually made it back. I wasn’t sure how many to look for, so when I saw two labs had returned, and the chest x-ray, I was wondering why I hadn’t received a phone call to schedule my Humira injection training and first injections yet.
So, I gave them a couple more hours, and I decided to call them around 2 if I hadn’t heard from anyone by then. Lo and behold, no one called me, so around 2 o’clock I called the VA about those tests and wondering when exactly my injection training and my first injections would be.
I was transferred to the telephone care nurse, like always, and this one tried to reach the GI clinic for me. After placing me on the longest hold of my life, she told me that either all my results weren’t back or that my results were pending review still, and that I should receive a call within the next day to schedule for my new prescription. That was all she knew, which was nothing more than I did at this point.
So I waited.
I waited the rest of the day Monday.
I waited all day Tuesday.
And, I waited all day Wednesday.
Come Thursday, 9 days after these tests were taken, and I still hadn’t heard anything from any of my doctors. Like usual.
I logged into MyHealtheVet, again, and I noticed that my TB blood test had returned, the results I assume we were waiting for on Monday. So, again, I called the VA, and I let the nurse at telephone care know that we were waiting on these results and now they were in the system, yadda yadda yadda, maybe we could plan a date for injections and training?
She told me the case manager Joanna, (remember I mentioned her in Frankie, Myrtle, and, the Double Balloon), well, she was going to call me back once she had ‘reviewed my results’. Usually, the VA doesn’t take my phone number, but this time, she asked for my number, so I was hopeful that meant she would call me soon, like same-day.
Monday when I didn’t receive a call like I was supposed to, I was a little upset. And then come Thursday, when I still hadn’t heard anything, it gets irritating, especially when you’re the person looking for relief.
When a doctor tells me they’ll call me Monday, with or without results, I expect a call on Monday. When I am told that my results will be back within a week, for sure, I didn’t expect that I was going to wait almost two weeks come Tuesday.
Being stuck in this broken body with my issues, when you’re told of a new plan or prescription, you get your hopes up, even if it means feeling bad for a few days. I was really looking forward to the Humira this week because the quicker I start this treatment, the quicker I can feel better.
But, this week was a bust.
Philip and I even cancelled our weekend plans for the Labor Day weekend because we knew I wouldn’t feel up to it. And, because we thought for sure I was going to start the Humira this week.
Researching Humira and learning about it from other Crohnie’s who have tried it before, I have been told that I can expect headaches, nausea, body pain and back aches, and, injection site swelling. And that’s with one injection. So, we canceled our plans in case I did feel really bad, especially with the initial four injections I get to look forward to, still.
I assume that after the long three-day weekend, that’s when the VA will call me to schedule my Humira appointment. I’ll probably go in for my Humira injection training next week, with my first round of 4 injections, too.
And now, it’s Friday, another week of waiting has passed. I’m not feeling any better and I have no idea what’s going on with my Crohn’s plan. Contrary to any plans, here I am, informing you that nothing new has happened in my life this week. Nothing happened other than trying to plan ahead for when everything is supposed to happen. Pretty exciting stuff here.
Oh, and next week is going to be an exact repeat of this week, with me waiting for the VA to call while I continue to feel like hell. Woo-Hoo!
Other than my Crohn’s issues, my carpal tunnel, my skin, and, my migraines are what I consider ‘normal’. I’ve been trying to take the Nortriptyline every evening to help the migraines, but I have found myself forgetting because I take meds in the morning and at night. I really do need one of those pill containers or an app for my phone that tells me when to take my medications.
Sadly, I’ve felt nauseated and I have suffered from insomnia again this week, which the Nortriptyline could have helped. Oh well, another week and month gone.
Now that it’s September, I am constantly reminded of the fact we aren’t doing our first IUI for Baby Horsley this month.
I remember at the beginning of the fertility journey I was so hopeful for September, and now that it’s here, my heart is broken. It’s no one’s fault really, just life.
I keep trying to tell myself not to get my hopes up for January, a repeat of this month’s feelings, but I can’t help it. It does give me something to look forward to until my issues get better, someday.
Otherwise, in between waiting on the VA and my Crohn’s issues, I managed to be crafty this week and make a few dresses and a T-shirt quilt that I am pretty proud of. That kept me busy this week, at least.
So, the plan for the three-day weekend is to stay home, walk the dog, finish homework for this week, and sign up for Take Step Lexington for Crohn’s and Colitis. I want to make a team, It Could Be Worse, so if you want to walk with me, you can! (Note: You do not have to pay to participate!)
I will wait to call and harass the VA again on Monday if I don’t receive a call today. Who knows, the day is still young and a lot could happen.
And, It Could Be Worse.
Mark September 18th on your calendar!
This Event at Churchill Downs is a week later, on September 25 at 1 P.M. This is the 2nd Annual Fun Day for Crohn’s and Colitis Foundation.
And as always, any information you’d like to offer up about Humira or any of my struggles and issues, I have open ears and I’ll happily take any tips you have!
Please Like It Could Be Worse on Facebook for Updates!
Thank you for reading, and for keeping up with My Crohn’s Journey. Also onHuffington Post.
More Info On Crohn’s Disease at
www.CCFA.org & CrohnsandColitis.com & crohnsdisease.com
Previous Posts on It Could Be Worse:
Frankie, Myrtle, and the Double Balloon
I just found your blog and have been catching up on the last few months of posts. I just had to say that it’s nice to find someone in a similar situation, not one I would ever wish on anyone though! In November of 2013 I was diagnosed with Ulcerative Colitis. At the time my husband was in the army and I had been dealing with symptoms for too long. We have now moved home since he decided not to reenlist. However,still haven’t been able to achieve remission. I’m currently on a few different meds that don’t seem to be working and waiting for my 3rd colonoscopy (next Friday)in the last year and a half. My husband and I have been married 6 years and are also dealing with infertility. We haven’t been able to find out much since my GI doctor has recommend that we no longer try until I am in remission. I’ve enjoyed reading your blog and admire your ability to stay positive! I know how hard that can be. Thanks for sharing your story and I can’t wait to continue to follow along.
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MalloryKJ, I am so sorry to hear that you have so much in common with me. I know finding remission is difficult, especially moving and stressing with fertility too. I am so sorry for that as well! I would never wish my experiences on anyone, so I hate to see another suffer like me. I am happy you found my blog! I hope we can both be positive and figure this shitty situation out! I’m on Fb too of you ever need to vent or ask questions!