Hi Friends!

     I'm actually back sooner than last time.....making progress in conquering my procrastination! ;)

So, the news...
    Last year, the company that makes the only formula I have ever used, decided to update their formulation for better taste and easier mixing.  In this process, one ingredient was changed to be derived from sunflowers (which I can't have in anything due to reactions) instead of safflowers.  With the little bit of stock I had left plus a friends haul of the old formulation, I was able to last until recently.  I decided I was low enough on the old stuff that I needed to do a trial of the new.  To say it didn't go well would be an understatement.  It caused some reaction symptoms just to mix it, but once I put it in my body it caused quite the chaos that my mast cells are still getting over.  We called the company and it has become apparent there is no way for me to get the older formulation, forcing me to try a different formula.  The company sent me 8 cans of the old that they have stockpiled for those who can't tolerate the new, so that bought me a little more time.  By God's grace, there "just so happens" to be another elemental formula that recently changed their formulation from sunflowers to safflowers!  Please pray that this next formula will work well!  This situation comes at a rough time with my recent severe nutritional issues and, if this doesn't work out, I will eventually be stuck with no nourishment until I can find something that will work.  TPN (IV nutrition) is not an option for me because all of the formulations contain dextrose to which I am highly reactive.  So... I would definitely appreciate your prayers about this situation!

I went to the dentist on Tuesday for a cleaning and to evaluate some pain I've been having.  Turns out I have 5 cavities....difficult cavities.  My dentist is sending me back to UNC Chapel Hill to evaluate possibly putting me under anesthesia to take care of them.  It is highly possible that the worst one (a wisdom tooth) will actually have to be pulled because of how deep the cavity has gone...the repercussions of malnutrition and dehydration! :/  My dentist said that it has made it all the way to the center nerves of the tooth which makes it extremely difficult to even attempt to fix it without me being knocked out because I can't have any local anesthetics to numb me.  So now we are playing the waiting game to see when they can get me in their schedule.  I am much more at peace this time around since UNC did a fantastic job with me the last time I had to go under for dental procedures.  It's always easier knowing they will take care of me.  Anesthesia teams are some of the hardest to explain what MCAS can cause and why I have to have a very strict anesthesia regimen.  I have yet to figure out why, but it happens!

My doctor had to up the amount of potassium in my daily saline infusions since my potassium was still dropping into the low range even with them upping my potassium infusions to daily (instead of just 5 days a week).  The increase has brought my potassium up into the normal range again.  My home health nurse comes today to change my Hickman dressing and draw labs so we will see if it is still up this week.

Well, I think that is all I have to update on right now.  Thank you so much for your prayers and encouragement y'all never cease to give!

Taking Life One Crazy Adventure at a Time....
                                                                   Allison

The New Year's Revolution...

Hi there!

     I want to start off by wishing all of the wonderful mothers out there a happy Mother's Day!

It has been nearly 5 months since I last updated.  WOW!  I kept telling myself that I really needed to update, but the more time went by the harder it was to catch up.  So, bear with me as I try to make up for lost time!

My health took a drastic turn in the beginning of January.  I firmly believe my MCAS decided to say phooey on any new years resolutions and started a full fledged revolution! ;)  I began feeling very achey all over and very fatigued.  It gradually worsened over the course of a couple weeks and I began having headaches, nausea, and lack of appetite.  I got to a point I couldn't eat anything by mouth other than liquids that would come right back out via my G tube drain and couldn't do formula either.  This made it to where all I was getting was 2L of fluid per week.  I became extremely sick and weak with a resting heart rate of 155 and ended up being admitted to the hospital for 5 days due to severe dehydration.  They were continuously giving me fluids, gave me 10 bags of potassium, and got me back on formula, albeit a very low amount over a long period of time.  By the time I was discharged, I had improved a good bit.  Once home, I quickly started to deteriorate and almost got to the point of having to return to the hospital.  However, in an attempt to keep me home, my local mast cell doctor put me on potassium infused saline infusions 5 days a week in addition to the 2 days I was

In my St. Patty's outfit :)

already receiving the plain saline infusions from my cardiologist.  Thankfully, that successfully kept me outpatient!  I continue to struggle with nausea, headaches, fatigue, aches, etc. and I have lost 63 pounds so far this year which has resulted in having to have multiple J tube changes because Mic Key Buttons aren't adjustable, so once I shrink to a certain point, the tube gets way too loose which makes it necessary to change to a smaller size.  I'm nearing the point of having to have it changed yet again.  I've gotten my formula rate up a little bit since my hospital stay and have my pump set to where it runs around the clock, feeding me for 2 hours and then automatically stoping for an hour to give my body a little rest.  I still cannot eat/drink anything by mouth unless it is something that will automatically flow right back out through my G tube drain.  I am on a liter of potassium infused saline all days of the week now due to very little fluid intake (in my formula) and my potassium fluctuating and being low most of the time (I get blood drawn to check up on my levels once a week when my home health nurse comes) and I'm on an oral B12 and folic acid supplement due to those being deficient.  There are days I feel so defeated and want nothing more than to curl up in a ball and die, but I'm so grateful for the Lord's strength and the people He has put in my path to encourage me.  The Lord has shown such grace and comfort on my behalf, and I know, even when I feel so alone, He is always here with me.  It is still a mystery as to what really set off this whirlwind in my body, but for now, we are treating symptoms and trying to fix everything it is causing.

On a happy note.... I'm excited and looking forward to welcoming another niece next month!!!  Vivian will officially have the roll of big sister!  If Auntie Allie had enough energy she would definitely be doing a happy dance! ;)

This little girl (my niece, Vivian) always manages to
put a smile on my face and make me giggle!
As you can see...she LOVES taking selfies!

I appreciate your continued prayers and support through this difficult journey!  I make no promises, but I will try my best not to let so much time pass before my next update!

Allison