Support Rae's Journey to Recovery
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Hi all,
We have new news! We had delayed posting anything because Rae was waiting to find out about some next steps forward. Well, last week a lot happened and here is Rae’s update from Facebook if you haven’t seen that or don’t have Facebook. Once again, thanks for all your support.
3/29/25
"Hulloo. It's been a minute.
Some people have been kept up to date on kind of a one-one-one basis as we go - at first because we were in a 7+ week holding pattern with no official update, and then it was because info was changing so quickly!
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Since late December/early January, my nutritional intake has lessened even more.
Food hurts. Even liquids hurt. I have to dance the very fine line between extreme hunger pain, and the pain triggered by substance (liquid or solid) in my stomach.
So we have been actively pursuing tube feeding. But it has been a real challenge for my Dr. to track down how that can be done.
In the Fall, we began suspecting something called MALS, which could potentially be a culprit for my pain and nausea - and the lack of nutrition directly hinders my body's capacity to treat/heal the other diagnoses uncovered in 2024.
To be clear, MALS is not a certainty though.
It can be difficult to diagnose, especially if no-one in the area is familiar with it. It was amazing that I could get the testing as quickly and straightforward as I did in January... but then it was inconclusive (I got two opposing answers, one said there was no signs while another said there was technically evidence)... Oyvey. Otherwise, different doctors wonder if it's a motility issue because there was "technically evidence" of gastroparesis. But no diagnosis either way.
My Doc is a champ though. He's looking into MALS specialists and motility dr.'s with and for us (calling all over the country), and also actively advocating for my nutritional intervention.
This week, we tried to get me a feeding GJ-tube - we were instructed by a hospitalist to go to the ER to get admitted and then I would get evaluated for a GJ-tube. ER all day Monday, admitted Monday night. Tuesday, I was given a nasal tube (NJ-tube) that would bypass my stomach for a few days, monitoring me against complications with upping my caloric intake. I was monitored for 24hrs (& lemme tell you, that nasal tube suckity-sucked majorly), and because my labs were doing okay, and I don't have a diagnosis, they refused to do the kind of tube we were asking for and removed my NJ-tube, not completing the feeding schedule they were gonna have me on till Thursday (today). I was discharged Wednesday.
The positives are that I tolerated the feeding tube that bypassed my stomach, implying that the issue seems to be confirmed (at least in part) the stomach is my issue in tolerating food, not necessarily the whole GI system (though the rest of the system is definitely fatigued from lack of nutrition/energy). They have given a medicine that might help move things along out of my stomach sooner - hopefully minimizing chance for pain and nausea. But I'm also having to try out a liquid diet in order to get more calories in my day too. Thankfully, we have some leads to follow.
Next steps,
We're still going at it, calling the recommended clinics, dieticians, and specialists, and working closely with my Dr.... That may include travel someday (we have already reached out to doctors out of state and made appointment[s]). And for myself, the liquid nutrition hopefully will buy me more time by strategically and gently sneaking in slightly higher caloric intake.
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For those that have been asking how to pray:
Regardless of our or our doctor's diligence, we have no control over the needed people getting back to us.. nor their availability (or lack thereof). And "months out" is very far when fighting effects of starvation.
So please pray for the right doors to be opened and shut, and for compassionate doctors that are willing to listen rather than pass me off. Pray for Josh and my endurance, and for God's provision, financially and in our daily needs.
Practically?
There’s still this Go Fund Me account. People have blown us away with their kindness and generosity. We met our original estimate, and that has been well burned through with medical needs so the amount was adjusted recently.
Also, here is my registry & amazon lists here (there's a lot of crossover on the lists, the registry is to hopefully have everything in one place, but amazon might be easier to use for some).I adjust the lists fairly regularly, and try to add notes on things so that people know what or why the item is useful.
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(I will put the shipping address in the description of the Amazon list.. additionally, my address should be listed if you go through the MyRegistry process [in the registry, if you click on a listed item, it should show you the address in the details below, so that you can copy & then when routed to the sellers website paste the address in the shipping info]. But if you're still unsure about any of that, you may also directly message me for my address )
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*I want to make clear, there's never the expectation/assumption upon people's generosity - we know God provides no matter what. But we are so blessed and encouraged by the way people have sought to support us with more than prayer & hugs. So thank you."
Just some lil' snippets of this last week
Feb 2025
Dear Friends,
I will ask Rae for an update and post that soon, but meanwhile I'll give my own brief update.
First of all, you have been INCREDIBLY generous and we've raised more than our initial goal of $21,000. Amazing! Josh and Rae are so thankful to all of you!
It's been a little over a year since Rae's system stopped tolerating food, which basically landed her on a blueberry/einkorn bread diet. I know we were all hoping Rae would see great improvement in her health, but unfortunately the opposite is true and leaves us feeling grieved and helpless when we see her decline further. But there is still much hope for recovery so "let us not grow weary in doing good."
Therefore, as the recovery period lengthens, beyond what they or any of us would have hoped, I've increased the amount of the goal we have all shared in raising for them.
My own recap since October is this: In the fall, they had to move out of their apartment. A very sweet family offered a room until they could find something more suitable. Shortly after that, a gracious couple from our church provided them with a bedroom, bathroom and a sitting room, in a home so clean you could eat off the floor, with a whole house hepa-filter and a landlord with a nursing degree. What a miraculous answer to prayer! This is where they are currently. And Pumpkin, you ask? Their dog lives with Josh's parents and they get to visit him.
But the suffering continues and the days are often long. Rae can still only tolerate blueberries and einkorn bread, and the lack of proper nutrition is taking its toll. I believe they are talking with her doctor about a kind of IV line to get nutrients into her system since her GI tract cannot tolerate food. This is very serious, folks. We are talking about keeping her from starvation at this point. The pain in her gut, the sleepless nights, the brain fog, the wheelchair and the need for Josh to carry her - this is their life, and it's hard. It brings tears to my eyes, and yet she and Josh continue to show resilient faith, appreciation for the small things, and an enviable love for each other and the Lord. They get out as they can and try to do "normal" things, and who among us has not seen their joy - Josh with his solid peace and exuberant laughter, and Rae with her sense of humor and sweet gentle smiles. This also brings tears to my eyes.
Please pray for healing. If you can do nothing else, please pray. If you can do anything else, thank you!
But pray, pray, pray. They need us. Sometimes when an illness turns into a long recovery period, it's easy to forget the sufferings of others as we carry on with our own lives. Please don't forget them. Put them on your daily prayer list and find ways to let them know you love them and that you still care. They have so many compassionate friends - thank you for however you can serve them.
That's all from me for now, but I'll add more from Rae when she sends her own update.
May God provide abundantly for you so that you can provide abundantly for others, whether through money, time or actions.
Anne
10/2024 - From Rae:
Since creating the GoFundMe,
It has been a long and painfully slow journey of treatment. We have updated our immediate community, or Facebook community here and there, but I wanted to write a kind of timeline re-cap, for people to have in one place. From January to October.
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We believe it was Bartonella that kept making my muscles weaker and weaker over 2023. And Late 2023 I couldn’t shake nausea and lack of appetite. MCAS joined the mix somewhere in here, but there's no knowing when it was.
January 2024, it got to the point of constant nausea and inability to tolerate any food besides small amounts of blueberries and a bland grain, like rice. My discomfort kept me from sleep for days & nights at a time too. This combination of little food and sleep really shoved my body/health into a scary spiral. I got weaker, and neurological symptoms got worse.
February, we finally got a diagnosis, Bartonella discovered. Treatment started, and within only 1wk I had a bad reaction and got worse cause my body wasn’t strong enough to do any battling yet. So treatment of the disease halted and by early March, we refocused, pouring everything into finding what my body could tolerate and trying to slow and stop my decline. I began IV therapy 2x wkly, blends of antioxidants, minerals, and even amino acids (to try and keep my muscles from being eaten away any more).
March and April, I was also experiencing a frustrating abdominal pain, deep, like my organs had been used as a punching bag! I was living with this day & night until the pain got so severe, my body could no longer manage it and it put me in the ER at the end of May. The abdominal pain was from my mast cells that had gotten so angry with the Bartonellosis...yet they were attacking *my* organs instead! Oyvey.
June was a month of leveling out. Pain was successfully managed thanks to my doctor's research and experience that lead him to so quickly suspect MCAS. I was still depending on just blueberries, and rice wasn't working well, so I found a better alternative bread Josh and I make ourselves. It's been much more sustainable than rice! Though I could still only manage 1 slice at a time (only 2 slices per day, best case).
July, my doc wanted to switch from IV infusion therapy 2x wkly, to physical therapy 2x wkly because of the muscle loss and weakness that has me in a wheelchair since April.
He also said it was time to begin antibiotics.
When it comes to treating the Bartonellosis, with herbs or antibiotics, it can be very tricky. It must be slow and methodical due to how rough treatment responses can be, plus the bacteria can be effective at hiding from and resisting antibiotics. We started off slow, and I was checking in with my doctor weekly.
Unfortunately, despite being slow & careful, my body just couldn't take it, and that first week of August, I plunged into a terribly unpleasant setback in health. My doctor said the antibiotics seemed to "really piss off Bartonella, and you clearly can't handle a pissed off Bartonella!"
I said, "as much as I love to be a stinker, I agree, sadly I cannot. " We stopped the antibiotic.
August... Man. Sleep has been it's worst all year. I have gone almost 5-6 days without a night's sleep due to torturous night episodes of the strongest nausea, pain, and uncontrollable full body shaking.
During the days it's hard to tolerate food consistently. Yet then hunger pain feels like my insides are being ripped apart.
Mentally, every night up to present day has been like a game of chicken with my night episodes... I still will go many nights a week without any sleep, or if I get sleep, its usually only 1-2hrs once the sun has come up.
On one hand, my body is being starved, and my cells can barely do their job of efficiently converting food to energy, or detoxing! And then my cells don't get adequate rest from sleep most days..
But on the other hand, it's a mystery I've been sustained as much as I have all year on so little! I can't explain it.
With this nasty wave, I have felt the weight of the whole year. The extent of it all bore down on me psychologically, emotionally... and spiritually I have needed to dig down deep. Or snap.
I really started to feel near my wits end in August. Like my mind really couldn't bear much more strain and deprivation!
Friends, I must say though, God has been beyond amazing and gracious.
He has provided the many things I needed in order to cope - time with family, time in nature, and friends that showed me love through service (at times literally carrying me).. friends that worshipped and prayed with me while I dread the night and struggled to restrain anguish.
And even in the midst of episodes of writhing, and crying... God was/is so near (I wish I could clearly say how). It's not even like I felt His presence in a very spiritual way, yet, my knowledge of Him was as sure as my lungs know the oxygen in the room. And His Word would often console me quickly after. Endurance through this isn't something I've been able to muster up...It's given in my hardest moments. Even though it is still hard and I often teary-eyed say "I don't want the sun to go down yet" .. I have felt His strength, not my own, each night since August to walk out into the night and greet my pain instead of it coming and dragging me off. A willing heart. Is a free heart.
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Now. Going into October...
- I'm back to getting IV infusions for 6wks to try to "turn the boat around".
- I've paused both PT and antibiotics until I'm stable again. When we re-try antibiotics, we'll try a different approach.
- I'm also finally in the door of a GI specialist, and have multiple procedures/tests coming up! Cause the daily nausea, pain, inability to tolerate nutrition, and sleepless nights is proving a big road block to everything. And keeps me so weak and fatigued.
- My sleep (or lack-there-of) and episodes have not improved since the beginning of August, and it is practically the norm now to go up to 6 days with either no sleep or only 1-2hrs.
So that's the timeline of this year, and the current news in treatment direction.
My doctor is not disheartened, he's familiar with all kinds of setbacks, but we are definitely trying seriously to *not* lose more ground, and to re-stabilize. My body is just so sensitive to everything we're trying, even the good things.
But I'm growing in endurance each day.
If you feel lead, please pray for my body to stabilize again. For sleep. For nutrition. For productive investigation from the specialists I'm seeing.
(When I say "stable", for me that is: sleeping every night/most nights, nausea kept to a minimum, and tolerating even just the blueberries, and einkorn bread consistently/daily.
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I want to say, if you've read all of this... Thank you. For your time, your care, your prayers, and any acts of service or financial contribution.
The GoFundMe has been a tremendous help covering my IV treatments in the Spring. Between Dr. appts every week or couple weeks, regular medicines & supplements, and my specific grocery needs, each month's costs for just myself are hefty. There is still much ahead for me and my treatment too, but even if what we received is all we will receive, I still acknowledge it as a MASSIVE gift.
We wish we could see all the names on the donations and thank each one, but even still, we thank our entire community for your generosity, for all the prayer (for all the shares ) and for consistently being there for me and my husband. ❤️
To infinity, and beyond
Co-organizers (3)
Anne Bittner
Organizer
Purcellville, VA
Joshua Ryan
Beneficiary
Lisa Sraders
Co-organizer