The Good, The Bad, & The.....Not-So-Pretty

"In my distress I called upon the Lord, and cried to my God: and he did hear my voice out of his temple, and my cry did enter into his ears."

{Samuel 22:7}

Hi Friends!
     I've decided to give you the happy news first and then go into the not so fun stuff....

The Good:
   First of all, my neck is a LOT better!  I would say I have 99% of my range of motion back.  I was discharged from physical therapy on Friday and I have a chiropractic re-evaluation on Wednesday which is looking promising to be able to drop down to twice a week!  He is finally able to adjust it now that the muscles have surrendered their fight.  The therapist gave me some exercises to continue at home that do not involve any core tightening for my G tube's sake.

We got Matilda back from the shop last Tuesday!!  For those who may not know/remember, Matilda is our giant Sprinter van that was involved in the wreck in June.  She is all fixed up and you'd never know what she's been through!

I have to leave the house at 5:30 in the morning (Tuesday) for a 7am appointment with my dentist to temporarily fix some more of my teeth.  I am REALLY looking forward to getting more work done seeing as how the teeth he hasn't done anything with continue to worsen, causing a significant increase in pain.  Would appreciate your prayers for safe travels and a productive appointment!

The Bad:
So, as y'all know, I've been struggling with anemia for quite some time now.  Well, I would say it is definitely caused by my iron deficiency!  My local mast cell doctor checked my iron and the lowest normal is 60...my iron is 16!  Yikes!  My sister has tried an iron supplement that has really worked well for her so as soon as I get everything else sorted, that'll be next on my trial list.


Now for the Not-So-Pretty side of things....
     I contacted my GI about my recent G tube issues (pain, discharge, and bleeding).  I ended up having to get a Covid test before being seen in the office, but once that was done I was able to go in to get it checked out.  My test was negative if you were wondering. ;)  Anywho... The pain probably originated from the stoma starting to ulcer.  So, let me back up a second... a little while back, Zantac was recalled and stopped being provided.  At the time I was on the max dose of Zantac plus IV Pepcid.  When they recalled it, my compounding pharmacy could no longer access it and I was forced to change to taking IV and oral Pepcid (through my J tube).  Since then, I have struggled greatly with acid overproduction and reflux (which has worsened my teeth as well).  Probably the abundance of acid caused my stoma to start ulcering.  The PA did a swab/culture on my G tube site and it is infected as well which is probably a result of the ulcering.  I am trying my very hardest to stay out of the hospital and care for it outpatient.  My infectious disease doctor ordered an IV antibiotic, but some complications in getting the drug has caused a delay in getting it.  I have started showing signs of it possibly going into the bloodstream which we are really trying to avoid.  My temperature hasn't gotten really high so I'm still safe.  My blood pressure is starting to hang out fairly low and my heart rate has been racing quite fast, my stomach is a bit off making me not really want to do formula, and I feel rather weak.  BUT, I have an appointment to get my first dose of IV antibiotics tomorrow at 11:00 and then I will continue the rest of the doses at home as long as the first dose goes well.  I'm also supposed to start an IV proton-pump inhibitor to attempt to heal the ulcering of the stoma.  Hopefully this works and we can keep this G tube going for a while longer!
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I have done a lot of daydreaming of Heaven lately.  What a wonderful place I can look forward to when all of this chaos on earth ends and I get to see my sweet Savior's beautiful face!  It truly will be worth every moment of physical agony on this earth to get to spend eternity with my Lord and Savior!  I can't even imagine the magnitude of that moment when I step from this life into the presence of the Lord!

Congrats if you made it this far! :)  I know this was quite lengthy and I really appreciate those who continue to read my updates and pray!

Taking Life One Day at a Time.....
                                Allison

Pain, Pain, Go Away!

Hello There!

    This post is so overdue!  I kept forgetting until I had so much to update on that my procrastinitus kicked in and I’ve been putting it off.  I do apologize for the delay and I’m going to try to manage to remember everything.

On my way to one of my
many appointments...:)

Since my last update I ended up developing several largely swollen lymph nodes in my neck.  I went to a spine specialist who said they could definitely come from the whiplash.  They did an ultrasound but it ended up being scheduled after the lymph nodes had gone back down.  Anyways, the spine specialist referred me for physical therapy to help with the whiplash.

I had my 4-week chiropractic re-evaluation and I have to continue going three times a week for another 4 weeks because even though I’ve had quite a bit of improvement, my neck is still too tight to adjust it at all.

Got my hair cut in hopes of
decreasing the weight on my head
and relieving some neck pain.
It didn’t, but at least it made
it easier to manage!

The physical therapist is doing light massage and traction with my neck which seems to really be helping.  She’s also doing exercises to help strengthen the muscles that aid the neck muscles.  However, I’m not sure if I will continue the exercises due to another problem...

Speaking about the other problem...

I went to my second therapy session on Thursday and Friday morning I woke up with extreme pain wrapping around from my G tube around my rib cage to my back.  I was hoping Friday’s chiropractic adjustment would fix it but it didn’t and by last night it became very clear that it’s my G tube that is hurting and started oozing blood.  It could be a coincidence and my G tube stoma (hole for tube) is starting to break down or it could be that some of the exercises injured it.  I’m going on 2 years since having my G tube re-sited (removed the tube and had a whole new site made) and it’s possible that the stoma is starting to ulcerate and break down causing my G tube to need surgically moved.  Only time will tell.  I’m in extreme, nearly debilitating pain from my G tube around my left rib cage and it affected my sleep last night.  I’m giving it until Monday and if it doesn’t improve, I plan to contact my GI about it.  It’s possible that it’s just an injury that’ll heal, it’s just it is the identical feeling of last time when my stoma was going bad.  If I end up needing surgery I’ll most likely have to wait a while.  I’ve been enduring symptoms of anemia and needing a transfusion for months and I may be in an indescribable amount of pain for an undetermined amount of time with this tube all due to covid restrictions.  Trust me, I’m in favor of caution and restrictions to slow the virus spread...I just think there should be room for exceptions for those with diseases like mine who HAVE to have a family member with them.  There are treatments I NEED but have no access to because they won’t budge at all to allow me what I need.  Yeah...off my soapbox for now...maybe! ;)  I would greatly appreciate your prayers that someone in charge will budge and make an exception for me!  He’s a God of the impossible, right?  Pray big and leave the rest to Him!

On a happier note, my J tube seems to finally be calming down.  It still hurts some but I’m actually getting breaks from the pain and discomfort!  I’m very glad especially since my G tube has decided to act up!

My Ezra enjoying a car ride :)

I was supposed to get a couple more of my teeth temporarily fix last Tuesday, but unfortunately my dentist ended up not being in the office so they rescheduled me for the 28th at 7:00am which means we’ll have to leave the house at 5:30am!  That’s gonna be a long day!

Soooo....I don’t like getting involved with controversial subjects but I just have to get this off of my chest....  masks.  Please, people, stop constantly complaining about having to wear a mask!  I’m sorry...I KNOW they are NOT comfy - I totally understand!  You can live and wear a mask!  Due to MCAS and everyone’s love for fragrances/chemicals/etc I have worn a mask anytime I am out for the past 8-10 years at least and I’m still alive despite chronic illness!  If masks are the worst thing that happens to you in life, that is something to be thankful for!  So, hang in there...you’ll make it! ;) (Please, no argumentative comments because stress can make me very physically ill.)

Taking Life as it Comes....  Allison