WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Wednesday, June 3, 2015

June Already?

I cannot believe it is June already! Although finally the Texas summer and all it's sunshine is here!

Abby has had a few rough months. We suspect it was a combination of issues but triggered by a slow leak we found in her room way too late to prevent some issues. Once we got that taken care of things have slowly showed improvement. Like many with health issues her body is crazy sensitive to mold. I really need to pay closer attention to her room,in my defense it was leaking under a baseboard and under a dresser and I rarely move the dresser. I will be moving dressers regularly in the future.


The big tip off was the kidneys- again. Every single time she is exposed to something her body dislikes it always starts with the kidneys.

The proteinuria was bad bad and wasn't settling down for weeks at a time. Then came the other symptoms, the rashes, the fatigue, the weight loss, the grumps... the works. For once her Nephrology appt fell at the same time as a flare. Definitely caught the significant proteinuria, but everything else was holding fine, to our relief. This past four years has been all about keeping Abby's kidneys happy so we panic a little each time they are symptomatic worrying how much more damage they can take and still bounce back.

Once we hunted down the leak and fixed and treated it, her kidneys definitely responded positively quickly, but everything else is taking it's sweet time improving.


Of course we had what seemed like a month of horrid constant rain and all the pressure issues that come with T-storms, I am sure that added to it.


We are planning a move here shortly which I am sure has stressed her out as much as it stresses the rest of us out, so surely that has contributed as well. No matter how well you think you keep house, when you start packing things up it stirs a lot of dust up, which is also a trigger for her.


This go round we have definitely seen more skin issues. She has developed some "spots" on her legs. If you are from the Mast world you know exactly what we are talking about it. Definitely new for Abby. Some bruising which is unlike her. And an increase in the hickey like marks. As a matter of fact just her washing up left massive rashes/marks that looked like she had been dragged down a road in bare skin- they were smooth but horrific in how red/purple and massive they were. Those settled down reasonably quickly thankfully and within a couple weeks of each outbreak they cleared up.


Her wisdom teeth which we were fretting about have decided to make an appearance on the top. So, apparently severely impacted wisdom teeth will still cut the skin all on their own despite what the dentists say. While I am glad they are making room for themselves without having to put her at extreme risk to have them removed, they have caused her teeth to move. It kills me to see her teeth crooked(well okay, hardly crooked but definitely not straight any longer in a few spots) after the years of orthodontics, but I would rather a few crooked teeth then take the massive risks involved with a surgery - frivolous with her health for straight teeth isn't something her body can afford right now. On a positive, the world of orthodontics has evolved to the point that when she is well enough we can go get them straightened out again. So, we are leaving well enough alone for now. I see adults with braces all the time now.

Her stamina is less. Though she is up and moving around more now to our relief. Hopefully she will build back up now that she is bouncing back.

While I can honestly say that sunny 90 degree days aren't high on my list(I just like the sunny!) and her body definitely doesn't like the heat, it does seem to like "stable" weather patterns so hoping a nice long stable summer will help her out.

Sensitive and delicate for sure!

Glad we took the time to figure out what her body is safest with and what it hates, it makes it much easier to maintain stable.

All of these little things in the scheme of things I know aren't major. So many with similar diagnose's do not fare as well as Abby has.. but in our world we find them alarming, sometimes scary, and frustrating.

On the rare occasions I can step back and look at her from a different approach, what I see is remarkable,unique,evolving.

We have seen many symptoms come and go, many ebb and flow, and many new ones. Right when we get used to any given group of symptoms a new one will pop up and scare us. Eventually when we realize it is just another "small thing" we wonder if that new symptom will be the key to figuring her out. The metamorphosis.

This week a couple children that I have followed their family blogs about their health journeys have passed away. Little Nina and Mabel.

It really puts in all in perspective. I cannot imagine what their families are going through right now.

So, we will work harder to count our blessings.



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