Support Rachel's Fight for Health and Stability

Hi friends and family, Rob and I have reached a point in my medical journey where we are in great need help. We've already been swimming in feelings of desperation because of how long my health issues have gone on, searching for answers, and we're finally getting them [ slowly ].

I finally got back on my feet last July 2023, and had six good months before going down again in January. It started with a BAD bout of COVID, then kidney stones and a chronic kidney infection of which I just received my 9th antibiotic. I had surgery in March, then had complications being hospitalized for anaphylaxis of which I had 4 episodes in six days, and the fourth attack landed me in the hospital for four days after the second hit of Epinephrine didn't work. That started our weekly trips, consulting first with an allergist / immunologist who confirmed, that the anaphylaxis wasn't from an outside source, it was basically my body internally flipping me off. So, now, before I have any surgeries, he has to give me instructions on how to "prep" my body to be able to handle more surgeries and procedures. Meanwhile, the stones / gravel and infection have not stopped and are still present. I had a family Doctor at the time who wouldn't listen to me and GREATLY prolonged my care. We've weeded out the "bad" ones and finally have a strong team of Doctors. Because of the issues with the now former family Doctor who wouldn't send me to pain management, etc, and her constantly pushing me off on to the ER, we've had to make 18 trips as I was writhing in pain and had no other choice. It made me feel VERY helpless and beyond frustrated in fear of being made to look like a "frequent flyer." Thankfully, because of my husband who has fought for me, and amazing ER Docs who know my history, I have not run out of grace with them and they treat me like a queen! Actually they have a perfect concoction of meds they found help me best [ Dilaudid, Zofran, and benadryl, with a hit of Toradol an hour later. The caveat to that is, they have to be careful because I am high risk for a bowel obstruction. With the meds I HAVE to have for my bladder and urinary tract are dangerous to mix with narcotics. The whole thing is exhausting and stressful!!! I found ALLLLLL the Doctors I have now myself and have had to be my own advocate for the most part aside from my amazing new family Doctor, Dr. Chris Conrad, Dr. Caleb [ my natural Doc ], Urology in Indy, and my Pelvic Pain Specialist. GI has been HORRIBLE and we've been trying now for six weeks to get the upper and lower scopes done as well as the Bowel Motility test. I have two renal procedures to go through yet and we are trying to avoid me losing my bladder. I may need a bowel surgery as well as I can no longer go to the bathroom on my own or empty [ GI ] and it's really hard to eat. I've lost 8 lbs in the last ten days and my 3's are big on me! Being able to urinate is a challenge and it takes me about 20 minutes just to pee because I have to push so hard to even get it started and fully empty [ non obstructive renal reflux. ] I have to go through Pelvic Floor PT. Aside from all of that, I have: Dyspareunia, Endometriosis, Nephrolithiasis, Right Renal Cyst that has gone from 2mm-7mm is solid and they think it may be making me sick. I also have more stenosis in my neck and low back [ where I will have to be fused again but further down ]. C2 in my neck is bulging and I have already been fused from c3-c6 anterior and posterior. Anyways, that's the least of our worries. And finally, I have Vulvodynia. My medications are $1000 / mo. and my bills are $1500 / mo. Plus, all the gas it takes to go to Indy weekly and sometimes twice in a week. Then, of course, the surmounting medical bills. I was on just four medications, and now I am on 20.

Some days, all I can do is take a shower and I'm just done for the day. I have cold sweats, nausea, and am always really fatigued, and pain is a big problem. I am seeing a counselor [ which I put myself in counseling a few months ago ] and am also seeing a pain Psychologist. All of the exercises to help with pain, I am already doing thanks to my Trauma Counselor :) I miss going to church a LOT, but at least I can watch online. I miss working, I miss "normal" life!!!! I push when able and do what I can when I can. What used to take me an hour takes me three. The bladder installations I was receiving weekly were making me really sick and after the third one, Urology called it off. It took me two days to recover from that. I had two done before having to miss three weeks because of kidney infection. It takes me two days to recover from the ungodly amount of laxatives I have to take and I have to take them every two days. So, on top of the normal discomfort I have, there's all of that.

Finally, I have been with a company called One America on long-term disability receiving $2217.00 / mo. which allowed me to be able to work part-time which is all I am capable of doing. I haven't been able to work since March. Long-term disability changed their rules and I basically have to be a vegetable to receive benefits :/ !!!! I haven't received a pay check since May 10th, 2024. My SSDI claim started two years ago, was denied the first time as most are. Then, I went through the appeal process and was denied again. I have an appointment with a Lawyer this Thursday at 2:00PM. My medical has been a full-time job and now I have to go to court to fight. It took three Docs pushing me to enroll for SSDI before I gave in and made that move two years ago. With that, as I am doing now......sitting on my pride and asking for help. I've gotten better about it, but it's still difficult asking for help. My husband needs it just as much as I do, we're a team and I have gone through NONE of this alone. Family and friends have been amazing, and we are reaching out in desperation asking for help. My life has been a hell ride and none of what I have described is an exaggeration of any kind. We are real, raw and need our army. Anything you can do is greatly appreciated!! Thank you for listening and for your consideration in assisting us on this journey.

Rob and Rachel