March 2018

March 2018

 March was the month of making plans.

This month has had quite abit of unexpected sickness and new issues to contend with.

I started #bujo for the first time and found the whole process of making layouts, getting organised and the sense of achievement very rewarding and fulfilling. It’s been a great way of tracking lots of things every day and it’s definitely been of a benefit, so it continues.

I had blood taken almost every week of this month; for different things – a possible IBD flare up, liver blood work following my infusion and then a huge amount for my preliminary appointment with a new Liver specialist. But all of they didn’t point to any particular problem or issue which is reassuring but also frustrating – I still have some symptoms which don’t make sense. So the investigations go on. Following my liver appointment, I’ve been looking into the liver in general, its role in the body and how this changes when a person has an autoimmune disease. It’s been abit saddening but best to be prepared right? I have at least one more test before they have so more concrete evidence to whats going on and how to treat it.

Stoma wise; I’ve finally gotten rid of a persistent peristomal rash I’ve had all month but have had some leaks which have not helped it healing. I’ve also tried a new bag but found that this only concretes the fact that my body shape needs a convex bag, which is fine; it’s what I usually use and it works, but sometimes it fun to see what else is out there. Since then, I’ve felt more confident with my usual bag and my routine, it’s been reassuring and I feel the positivity I have with my stoma coming back; despite some reoccurring and lingering partial blockages. Thankful I’ve been able to have some time of work to get these sorted and myself back to strength.

IBD wise; I found out the results from my biopsies from my scopes in mid February – some inflammation but no specificity as to where in the rectum. I’ve been back on the enemas to help calm it down but its taken a lot longer than expected. We agreed to see what my next Vedolizumab infusion has in store and if no improvement we can try a second line of treatment to boost the Vedo. I feel disheartened – the Vedo should be working in that area without an additional medication. I feel that overwhelming fear of grief when I know my medications aren’t working like they should. I’ve been here with Humira, Infliximab, Infliximab with Methotrexate and the first round of Veodolizumab. But, I know we have options and I will keep on going. Failing that, we have surgery to tackle the stump and then we can see where we are. Least I am being overseen in a strong way. It’s very reassuring to be looked after by a wonderful team.

Advocacy; its been a busy month with lots of awareness being raise off the back of the side effects of #steriods for IBD. Lots of online advocates and those with IBD posted their #moonfacefordynamo photos and here is mine (below) and it even got a mention in the Metro online here.

Life wise; decisions have been made. The permanent move to Peterborough for my partner is coming in May / June so the search for a new place is happening in April. Work is going well and I am feeling positive about being back to almost full time hours and schedule. It’s weird to think that I’ve been on my antidepressants for two months and its finally settled most of my daily anxiety down. I still feel anxious from time to time but I have some self management skills to get me through those early warning signs. 

So far so good for this year. Despite all the health things going on, I’ve held my head high and gotten on with what I can and rested and taken a step back when I should. I’ve listened to my body without feeling too guilty or selfish. I’ve also got some plans and ideas in place with everything that is going on.

I’m taking that as a win.

Here is what I wrote about in March:

 

Until next time,

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