Latest Update/First Humor Effect Post

Things are continuing to progress this week, although rather slowly. I am continuing to taper the prednisone, which should accelrate the healing process, and as long as we go slowly enough the disease process (the pyoderma gangrenosum) should also be kept in check, especially with the addition of the Remicade. The arm wounds all appear to be healing quite well, but on Monday and Tuesday I began experiencing significantly increased pain on the my right wrist that began shooting up my arm. Dermatology advised me to temporarily increase back to 50mg pred from 40, which made a drastic difference. I am supposed to remain there for the rest of the week and then we will re-evaluate. Given that I was on 80 only last Monday, I still find this to be encouraging progress as in the past even coming down from 60 would inevitably be a process of many ups and downs over months and months. The foot wounds are looking good as well, I suppose, though with noticeably increased redness around the periphery and not much improvement vis a vis their depth. The photos are far far too gnarly for facebook; multiple tendons and an artery are still very clearly visible–and yes, you can see them move if I wiggle my toes. Gross!! 🙂

I try to keep as active as possible, walking 5-10 blocks every day, but this does cause a significant amount of discomfort for an extended period afterwards, and I am just not sure whether it is beneficial or if I should just really be relaxing it all as much as possible. I reached out to Derm with some questions regarding this and the best ways to encourage healing/if there are any potential changes to be made to the wound dressing regimen that would be less aggravating to the site, as currently when I remove the lowest layer of dressing and clean it it is both excruciatingly painful and also seems to remove the build up of yellow material, which we were under the impression is essential to the healing process. So we will see what they have to say!

Perhaps because of the increased prednisone dose (or a new “Adrenal restore” supplement I have added to the list of 15+ medications and supplements I take every day) I was also able to get nearly 5 hours of straight sleep the past two nights, which is actually very awesome for me! The combination of the prednisone and the craziness of the hospital/needing to empty the bag/take medications/check sugars and vitals/etc means that that is probably at least double the amount of uninterrupted sleep I have gotten since before the surgery! And I really needed it, because on Tuesday I was really really feeling totally pooped. I woke up already feeling terrible and with my wrist killing me, and at 8:30 I began the day’s regimen of health managment: setting out the days pills, changing my insulin pump, changing my colostomy bag, changing and cleaning all of the wound sites…by the time I was finished, it was almost 11:30! Luckily I only need to do all of these together every 2-4 days, but believe me, when it was done I was ready to go right back to bed!

The thrush and GI situations seem mostly stable in their improvement, so that is good!

Finally had a few hours of downtime over the past few days for what seems like the first time since the surgery…and it has actually been hard to even relax because we have been in overdrive crisis mode for so long now, I feel guilty now when I am not getting things done (because there is also still plenty that needs to be done, just not with as much urgency). I’m sure the prednisone also contributes to that sensation! There is also unfortunately a fair amount of additional stress from the insurance/general financial/ongoing living situation issues, which in my opinion also directly impacts my healing process but which I can also do very little about at this moment. One thing that definitely does help, however, is Shantih! The Amazing Therapy dog! (Super cute picture included!)

In particular being unable to walk more than a few blocks is a real bummer–both because it was my preferred exercise, and because it makes it incredibly expensive to get around even to convenient appointments, because I currently have to take cars even to appointments that would usually be easily accessible by public transportation…and while I can at least justify those expenses (even if I can’t afford them), it makes it very difficult to manage any additional social/leisure/mental health outings, so it’s just another roadblock on the list!

And all of the logistics/coverage issues are just such a roller coaster! One day it seems like I make a ton of progress and have set everything on the right track (eg, I finally found a very affordable solution with great coverage called Medicare Advantage Plans), and then the next day it all falls apart (eg, I found out that none of them participate with MSK)…but I have been in ongoing contact with a Medicare counsler from the county who has been very helpful, as well as a very helpful woman from Patient Financial Services (although it took going through 3 other very unhelpful people to find her!), and they are both working very diligently to help me get everything sorted out, so I again I think I am in good hands and headed in the right direction, it can just feel very slow and frustrating a lot of the time, especially when the stakes are so high! So, as always, I am just doing my best to take things day by day and take the good as it comes and not get too overwhelmed by the bad. Hopefully over the next few days I will be able to figure out a way to get out of this headspace a little bit and just…enjoy! So wish me luck, and I hope you all have lovely Fridays and weekends as well… 🙂

laughing through the tears