Well, since the last post, it has been another crazy and hectic few weeks with little downtime to write. So, I need to catch you up…
In my personal life, I began working at the CosmoProf with a mandatory 40 hour work week. Yikes. Going from not really working to working full time, my Crohn’s has been fighting me but I’ll get to all that.
I started working full-time, so my days have been long and my nights off have been short. Sometimes I only get a couple hours of sleep, my insomnia has been helped just out of pure exhaustion but at least I’m getting some kind of rest. I have worked three weekends in a row, and I have to work the next weekend. I should be getting every other weekend off after that, so having some off time will be nice.
When I have doctor’s appointments during the week, we consider those my off days because the VA can take an hour or it can take a few hours, so I get the whole day off when I have to go to the VA. I have to make up for that time on the weekends, but at least my boss and co-workers understand that I will have many doctor’s appointments and there are going to be days where I don’t feel well…
And a few days after I began working, it was time to celebrate Thanksgiving.
Thanksgiving, we used to celebrate with my family. But my family and I are not on good terms. I haven’t honestly spoken to my family, other than seeing them at my sister’s birth and what not, I haven’t spoken to them since last Christmas. I don’t call them, they don’t call me. My mom blocked me on Facebook and asked PHILLIPS my brother do the same. It is a hot fucking mess.
But anywho, my twin sister and her husband weren’t able to spend Thanksgiving together, he had to work, so we came up with the brilliant idea that she and her two sons spend the holiday with me and the Horsley family.
So, my sister drove up Wednesday and spent Thanksgiving with us. She had never met anyone from Philip’s family really, so this was a very good opportunity for her to meet just about everyone. Everyone loved her son’s Keith and Tucker, babies always make the holiday better. And Aunt Mary Love’s her nieces and nephews.
After Thanksgiving lunch slash dinner, we had to drive back to Georgetown, home, because I had to work the next day. I tried to stay up late each night with the kids, I try to get as much time with my sister as I can. I was crying my eyes out when she had to leave the next morning, I cry every time she leaves. It was such a great holiday, I think we have a new tradition of her spending the holidays with us.
I am still finding time for live music. I absolutely adore the bands I have come across this year, all of them, they really have changed my life. I obsess over them, I listen to them in the car, I listen to them when I cook dinner, I listen to them when I do anything really. I’ll not push the bands too hard on you, but I will upload my YouTube playlist link if you want to hear them.
They’ve all been playing Fridays or Sundays, so thankfully I get a little time to go see them and do something other than work these days.
And apparently, I’m doing so well at work that they’re already scheduling me to close by myself!
So, I technically have 3 jobs.
My writings with IBD News Today are still going well, I had a few weeks off just because of the holidays being on the weekends. With Veterans Day and Thanksgiving, they had two Friday’s off, which meant two Friday’s of no articles needed from me. I wrote about insomnia this week since it seems to be a common problem. I’d suffered from it and had been wanting to write about it for a while and finally got around to it. I’m used to writing a series of columns but with the holidays I’m choosing to do individual articles.
I am still writing with Everyday Health, too, with four articles submitted and another I have to write. I do enjoy writing for this website because I get paid significantly more, but there was a problem with my first payment, so I have yet to be paid. It’ll be exciting when I do, it’s somewhat a validation that my writings are important and kind of significant for the cause, research and education of Crohn’s disease and IBD.
And now, in between working, I’ve gotten to see and speak to a few doctors about all of my Crohn’s disease issues and other ailments.
Starting top-to-bottom, my migraines have been helped so much, upping my medication dose one more pill, nortriptyline, my left side of my brain has not been killing me. Every now and then I’ll feel one start to come on, and of course, I jumped to get my Imitrex, but I think we finally got that under control.
For my hands and joints, they ache. Every single day at work I have to make sure I have my brakes or I am going to be in some significant pain.
My right hand and thumb, not the one with the ganglion cyst, we did not really look at it when I went to see MSK. We were more focused on looking at my ganglion cyst and my right hand wasn’t really causing me any pain at that point, but now I have to make sure I have my brace on it because it aches and radiates throughout my entire hand. I’m thinking it has a cyst right on the joint of the thumb where it connects to the hand, but we haven’t looked at it yet.
My left hand and thumb, the one with the ganglion cyst that we aspirated a month ago, the ganglion cyst has come back. It grew back to the same size almost immediately, which is kind of depressing. I was hoping for a few months of relief before the ganglion cyst would even try to come back, but we’re a little amount of fluid was left in the wrist, I’m thinking it just helped it fill back up to its old size.
I had an appointment originally scheduled in January for them to look at it at MSK, on the same day as my next infusion if I get it, to check the status of the ganglion cyst returning, but they told me I could call before then if it came back sooner. Which it has.
So, I called the VA this week and asked for them to schedule me a consult with the surgeon, rather than having to have another appointment just to see MSK when we already discussed a referral to surgery. This would save me from an appointment in the long run.
The VA called me back and told me that my referral for surgery was put in! I will have to have a consult with them first, which is scheduled early January. I am definitely not looking forward to having any kind of surgery, let alone in my hands because I use them so much, but if it can bring me relief then I believe it is worth it.
I have read studies where people have remaining or permanent pain after having their cyst removed, scar tissue inside their hands causing pain or the cyst getting larger than originally thought, but everything has its risks I suppose.
I do have to go and have my hands x-rayed before my surgery consult, and I do have to go and do my pre-op consult for my colonoscopy coming up in a few weeks. I’ll get that done this upcoming week.
And as for my Crohn’s, I had my Entyvio Infusion #5 last Monday, which always goes by so slow for a quick infusion. I sit there and I listen to my music or I talk to my sister this time, it does make me drowsy and I was extremely sleepy on the way home, but oddly enough I could not nap. I woke up the next day feeling like hell run over.
I was supposed to work Tuesday, but I have warned my boss that I would feel bad. I had changed the schedule to have off a few days off this week, but that didn’t happen. I ended up taking Tuesday off because I felt so bad. I get really drowsy and sleepy and my body feels like it’s been beaten with no bruises showing.
It’s a 100% guarantee that I am going to bleed after an infusion. Any infusion I have ever gotten – plus those Humira shots – I know a few days after, I will have some significant blood loss. And it’s coming from my bottom if you didn’t catch that. No one should ever see blood this way. It’s always a shock, you never really get used to it, and it makes you sick to your stomach to see.
It is now almost a week after my infusion and I’m still having blood loss so I may have to call GI and give them a little update. I know before my infusion, I always have to get there early to get blood tests done, and all the enough they tested me for TB with the Quantiferon again?
I got to my infusion and I guess my GI, Dr. S, she was not happy that I’ve had weight loss again. I have lost almost another 10 lb since summer, which is not a good thing because I was getting my weight back to normal with the Pres is one. I did not get any saline during this infusion, she offered it to me if I really wanted it, so I told her we’d make it easy. I think I regret that and I could have used some fluid for dehydration, so I’ll make sure to get it next time.
The appointment usually goes pretty quickly, and I made sure to check on my upcoming appointments while I was there. I am preparing for my colonoscopy in a few weeks, which kind of ticked me off but it ended up working out.
I was originally told my colonoscopy would be the 8th, they sent me a gallon of the prep and pills to take with it this time, which I’ve never done, but when I looked at My HealtheVet website, there was no appointment in place, so I asked during my infusion and my nurse looked it up She couldn’t find it either.
So, she called up to GI and they ended up having to schedule me on the 20th. It’s only a week and a half later but it’s still something I’d rather just get done and be done with it. My scope isn’t until 1 in the afternoon which is significantly later than I like, I am going to be miserable, irritable, and starving.
It ended up working out because now I have to get my x-rays and pre-op done on the 8th, so scheduling ended up working out in the long run. But I still found it irritating that they told me my appointment date and it was never scheduled. It’s always something.
So, with my x-rays on Friday and my pre-op, too, I’ll work every other day this week, and most of the next week, too.
I’ll try to update you all again on my next off day.
Because for me, It Could Be Worse.
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IBD News Today Column:
Welcome to ‘It Could Be Worse’ – A Column by Mary Horsley
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Previous Posts on It Could Be Worse:
Crohn’s Disease Essentials and Emergency Kits
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