10 Days Later

My last blog post was around 10 days ago. What a slacker I feel like lately.

To be fair, I have been busier than usual and my body is still adjusting to running around all the time. I have been pushing myself nonstop it seems.

I do too much and I inevitably regret it for days later. I get ahead of myself and schedule to do things day after day, so now my rare lazy days are spent in recovery. So, again, I apologize for blog day coming late.

Since my last post, Two-Step TB Test – WK 2, I have had three doctors appointments and scheduled two more. I have had four photo shoots, attended a charity ball, and, I completed another long week of school.

I have been crazy busy it seems but I want to do it all – even when I shouldn’t.

I have suffered hand pain more severe than ever, with some significant and visible swelling on the left wrist. There is an area of inflammation that seems to be ‘growing’ just below my left thumb on the wrist.

I saw my doctor within MSK, Musculoskeletal, at the VA this week, leaving with a prescription for a NSAID Voltaren cream to help with the pain and a suggestion for corticosteroid shots up to 4x per year. I will not look forward to that.

My underarm has yet ANOTHER tender spot that is irritating me, possibly a third reason to believe I am getting hidradenitis suppurativa, another issue that cannot be fixed.

Oh, and I still get shocks in my right breast that is only slightly managed with the Gabapentin, now upping my dosage at night to help fight my insomnia and immediately waking in pain in the morning.

I have struggled with more insomnia through my fatigue – even now I write this part at 2:40 AM. Insomnia this week has even kept me up beyond 6 AM some nights. I fight to get to sleep and to stay asleep, perhaps sleeping pills could help? Damn insomnia. I have suffered more insomnia this week than in weeks past. I toss and turn and I wake up with hot flashes or hand pain, I never sleep well.

I visited with mental health and let my therapist know everything that had happened since our last visit, but I won’t be returning to that clinic.

If you are friends with me on Facebook, you know I had some drama with the VA, go figure. So, you may have already seen the rant – but oh well. Feel free to skim over this then. Ha.

So, get this. I go into my Neurology appointment and the first thing that the doctor questions me about is my mental health. He told me he had been reading through my mental health therapy sessions in my chart and asked me what troubles I was having at home…

I was BEYOND baffled to find out that these therapy sessions were not private, that everybody-anybody-Joe-Schmo working within the VA could read my mental health therapy session charts and notes. The nurses. Doctors. And Lord knows who else. They all seem to have access to my private therapy notes.

So, it looks like I will no longer be going to my mental health doctor and I may or may not be requesting an outside source for meetings.

Then, I immediately headed over to the other VA to raise Hell about anybody and everybody being able to read my PRIVATE thoughts.

I was so livid and felt highly uncomfortable. Wouldn’t you think that this illegal?!

Beyond the VA mess, I have kept down a handful of meals, though, so that marks progress? But not always.

For the rest of the week, quite a few good days and positive moments. I actually WON a year supply of my favorite ice cream – a cookies and cream milkshake with chocolate milk from UDF, my true love.

For my column It Could Be Worse with IBD News Today, I began my new series, ‘Beyond the Bathroom’. In this new series I will discuss symptoms that can occur with a Crohn’s or Colitis diagnosis, other than the dreaded restroom visits, and I share what some of us go through on the other side of the powder room.

The first article I shared, Crohn’s Disease: ‘Beyond the Bathroom’ Series, serves as an intro to the future series of articles to come. I mention my Crohn’s Disease symptoms and what I have suffered through.

And in between all my ailments, I have gotten to meet four new photographers so far, each with their own unique style and ideas this week. My first shoot in Georgetown ended in the police bring called!

In the window images on my Photo Op page, someone thought the photographer was a creeper taking photos outside my window or something! I had already left but I guess the police had the photographer walk them around the studio to check on my well-being. Hilarious.

I enjoy posing just for fun and this is much better than my endless bathroom selfies! I wouldn’t call myself a ‘model’, but rather someone enjoying playing dress up!

For this upcoming week I’ll see GI and my dentist, with my next planned Remicade infusion on Friday, and a few shoots in between.

Considering I have been on Remicade infusions since Thanksgiving, around 21 weeks. I really shouldn’t be having as many problems as I am still, something’s gotta give. I’ll discuss everything I’m still dealing with my GI, and who knows, perhaps my infusions will be changed. They could be changed to more frequently, larger doses, to even a different medication like Entyvio. I’ll just have to see.

I’ll try not to delay anymore, as I’m finally going to post this blog and try to get myself back on schedule.

For me, It Could Be Worse. Cheers, dears!

Thank you for reading, and for keeping up with My Crohn’s Journey. Please Like It Could Be Worse Blog on Facebook!

And as always, any information you’d like to offer up about Remicade infusions or any of my current struggles and/or issues, I have open ears and I’ll happily take any tips you have to offer!

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CURE for IBD:

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%!!

To Donate:

www.cureforibd.donordrive.com/campaign/icbwblog

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IBD News Today Column:

Welcome to ‘It Could Be Worse’ – A Column by Mary Horsley