Here I am again sitting in a comfy recliner @ Hutt Hospital getting another infusion for Scleroderma and Interstitial Lung Disease (SSc‐ILD), this being the second course of the primary dose of Rituximab.
Catching up on what is happening around the world in the many Scleroderma Support Groups on Facebook that I’ve become associated with over the past few months.
Many of these are helping to raise awareness of this rare disease and much needed funds to help support research for a cure during Scleroderma Awareness Month.
The past couple of weeks have been a bit of a rollercoaster for me, as the first few days after the initial infusion my body ached quite a bit and I was generally feeling blah. Waves of fatigue kept me from doing much around the house and I couldn’t focus on much at all.
By the time the weekend rolled around I had perked up a bit, although doing some light housework would take it out of me and I’d end up having to rest up for an hour or so just to recuperate.
The start of the following week saw me spending more time in bed as my energy levels were very low which the animals didn’t mind as the weather outside was shocking, so they ended up spending much of their days lazying around the house with me often cuddled up in bed.
By Thursday I started coming right just in time for Annette & I to take a trip up to Palmerston North to farewell some colleagues of ours for the weekend. However, this meant that Monday was pretty much a recovery day for me, even though I hadn’t really done a lot over the weekend except the driving around 🙂
Annette has noticed that the crackling in my breathing especially at night has been noticeably better than it has been for quite a while, and another general observation is that my shortness of breath isn’t as bad as it has been of late. Also, my SpO2 levels and heart rate have also stabilised slightly over the past week which is an encouraging sign.
After this second course of medications hopefully everything will stabilise enough for me to function more fully than I have been.
However, over the next few months I will need to continue remaining extremely vigilant and careful about being in group settings.
Ensuring (as much as possible) that I don’t catch a cold, get sick, or catch an infection of any sort, as my immune system is in effect resetting itself.
What that means as far as Covid, Flu and Pneumonia vaccinations I guess we will have to inquire of the specialists in due course. But what better way to raise awareness of this rare disease during Scleroderma Awareness Month than this eh!
Again I am extremely thankful for the team @ Hutt Hospital Medical Day Centre that look after me as I go through the process of having these infusions – you guys and girls are legendary 🙂
Please help other people like me “Raise Awareness” of Scleroderma, especially throughout the month of June by sharing links to this blog and information about Scleroderma on your social media platforms with family, friends, and co-workers. As raising awareness of Scleroderma is one of the “Greatest Gifts” that you can give to those who have Scleroderma.
If you are able to, maybe you can help also donate monies to one of the following, or create a fundraiser of your own:
The Scleroderma Support and Education New Zealand Trust Givealittle page which has been set up to support & educate people living with Scleroderma, empowering them to make informed decisions regarding their own health care.
The Scleroderma NZ Givealittle page has been set up to raise funds for the national support group which helps patients and their families to cope with this rare and difficult disease to manage.
The life and times of Perry... 