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Jaclyn’s Journey, 7443 Thomas Blvd, Pittsburgh, PA (2026)

04/25/2026

We fall, We break, We fail.
But then.
We rise, We heal, We overcome

Baby steps. Its taken me two weeks to write this post- sorry. It’s been a very long two weeks full of baby steps. Every day this week i’ve been able to make progress. From sweating in the sauna (which is a natural bodily function that my body wasn’t able to do for the first 6 days of treatment) to standing with assistance to biking(slowly but surely).

My eyes have been opened more than I ever thought possible. Mold is in my body, sky high levels of heavy metals are in my body, and my body has not been able to get rid of “the bad stuff” like it should (there’s so many things in my body that are not supposed to be there that I can’t even list everything- it would be to long).

We’ve found a lot of answers, but it’s going to take a long time to get better, as I said before baby steps. My body hasn’t worked properly for a long time and that does not reverse quickly. It wasn’t just one thing that made me sick it has been a multitude of things over time.

One of the biggest answers we have found through testing is that I have off the charts levels of tin. Tin is not a heavy metal that they do see often. They have treated 3 other people who also had high tin levels and all of them had severe central nervous system problems. Tin causes degeneration of myelin. A demyelinating disease affects your myelin sheath. This is a protective cover that surrounds nerve cells. Transverse myelitis is a demyelinating disease that caused my paralysis.

I have faith in this process, but I need my prayer warriors to pray not only for complete and perfect healing, but also symptom relief. God has shown me so many signs that he is with me and I’m so thankful for every person praying for me. Karen Bott Lenhart has been with me every step of the way and has a bigger job than anyone realizes. So thankful that I get to call you mom💙 Prayers for mom too are so appreciated- she’s been a huge part of my success.

04/12/2026

I am a bit worried to post this because everyone has strong opinions, but God is in control and I need my prayer warriors. I’m embarking on a “journey” like never before.

At the begining of the year instead of making a New Year’s resolution, I chose to pick a word that I was going to hold onto. I chose HOPE as my word and it has been a great reminder on my best and worst days.

I have tried what feels like a million medications, supplements, and endless physical therapy. Yet, I am still very sick with pain, fatigue, spacticity, difficulty sleeping, inability to walk or stand, and horrific other symptoms. I have spent 90% of my time in bed over the past year.

My family and I have decided to treat my body on the opposite side of the spectrum by going to an environmental and functional medicine clinic. I just got to Charelston, South Carolina and will be here getting treatment wfor at least 4 weeks. I am terrified, but also very hopeful.

I’m posting this in hopes of prayer and support because it’s going to be hard. Most patients get sicker before any improvement is made which is why I am terrified, but hopeful with the stories I’ve seen and a friend who is 98% better after treatment.

Pray big- complete and perfect healing only God can provide💙
**I am not in the hospital, but wanted to share some of the reality I’ve been facing. I will be at the clinic all day and staying with my mom in a hotel at night.

03/16/2026

I’m so lucky to have had a friend so great that saying goodbye is so hard. Claire was a close friend and my heart hurts.

Claire lived life hard no matter the situation you were in. I would facetime you in the hospital one day and the next day you would be pushing through to travel, take exams, or go on like life was normal.

I’ll always remember Claire’s passion for life, her willingness to help others, and how good of a friend she was to me. Claire was one of the smartest people I knew, but also had the biggest heart. She was always thinking about others instead of herself.

I will miss her greatly and her legacy will live on forever. I keep thinking about Claire and how she made everyone feel welcome. The room always felt brighter with Claire in it. I’m praying for Claire’s family. I hope comfort finds them and that Claire’s love keeps showing up.

Claire was an organ donar and her last act on earth saved many lives with organ transplantation.

You can donate to the Crohn’s and Colitis Foundation in Claire’s honor through this link.

https://takesteps.crohnscolitisfoundation.org/teams/ChronicPainsChronicGains?wait=1

03/01/2026

It’s Rare Disease Day and to whoever knows or follows along knows that hits close to my heart. Behçet’s Disease and many other rare disorders feel like they have wrecked my life. I wasn’t able to finish college, I didn’t have a typical high school experience, and now I am unable to work. Behçet’s Disease has caused Crohn’s Disease, autoimmune arthritis, Transverse Myelitis which is why I’m unable to walk, a pulmonary embolism, pericarditis, ulcerations, and more I’m probably missing. I am also even more immunocompromised, my immune system works differently, and long, high doses of steroids have made me look like a different person and feel like I’m not inside my own body anymore. I’m lucky to have parents to help me, good insurance that will *usually* cover medications I need, and an unwavering God who loves me no matter what. Every day is hard, yet my symptoms are invisible. The pain and fatigue I feel no one will truly understand. I have spent months in bed and sleeping all day, every day. I have also been in the hospital so much I wouldn’t be suprised if it was more than a year. I have to go to many doctors appointments that feel like torture. I always try and act as if I’m a typical 26 year old, yet I pay for it in the end. However, I’ve learned that true friends will always stand behind me and to leave the others. I have learned to have more empathy, compassion, and to celebrate every good day. Who can tell the pictures I’m doing well or doing poorly- I’ll give you a clue and say I deal with symptoms 100% of the time.

11/03/2025

My world felt like it flipped upside down waking up paralyzed November 2, 2021. I can’t believe I’ve made it to my 4th life day.

This year I traveled, rock climbed, saw many broadway shows, stood by Amanda’s side while she said I do, spent more time with extended family than ever before, and snuggled with Only (A LOT).

This year has been hard to say the least with excruciating pain, fatigue that caused me to sleep 20 hours a day, and loosing the ability to stand or walk due to nerve root damage in my legs (something completely separate from a SCI), but having family and friends support no matter what has meant the world to me.

Trusting God no matter what because his plan is so much greater than mine.

Just because your life changes doesn’t mean it’s over💚

07/23/2025

Something that has been going through my mind is the moments in life that I don’t share on social media. I live in the “grey” (middle ground) 99% of the time which is hard to fathom. I post about the highest highs (white) and my lowest lows (black). However, those black and white areas make up less than 1% of my time.

explanation of photos- sleeping way to long on vacation, only in the ER with me last week, giving myself IV antibiotics, before surgery, my central line that is always there, my first time outside in weeks when in the hospital, sleeping and getting IV medication during training with Only, white in inpatient rehab, at disney missing out because I needed to sleep

I’ll be real- all of these pictures were not meant for other people to see, but it’s hard to depict the grey area. I post the black when I’ve been in the hospital for long periods of time. However, it is starting to feel like I have serious medical issues daily. However, I post the white when I am on amazing vacations even when I feel terrible and doing very well at physical therapy. These moments all happen, but 99% of my life is lived in the grey area.

The grey moments are when I am flaring, but not in the hospital. I don’t post the hours doing physical therapy, hanging out with friends but having to leave early, say no, or cancel which is incredibly hard and breaking many of my friendships and my heart. The grey includes the weeks and months I stay in bed because I can’t even fathom getting up or fall asleep randomly. This is my life right now.

Lately, this has been hard. Since creating my “Jaclyn’s Journey” Facebook and Instagram, I chose to make my illness something that others saw details, yet the timeline is so hard to follow. I want to share my story in a positive standpoint and did for a long time, but honestly I don’t have many positive things happening and life is just so hard. (more in the comments)

I started posting during a 4 month hospitalization/inpatient rehab stay when I had wanted to keep others in the loop and it has become a place of prayer requests, hard times, and celebration that I have wanted to keep. After the 4 month hospitalization, my page has represented fun travel, intensive physical therapy, my service dog Only, celebration, and sorrow. However, these moments have happened in a very atypical pattern. My timeline of doing great and then crashing does not make sense because I do not share every detail of infections, other medical problems that I don’t want to share, and times where my body just doesn’t cooperate with me.

I have posted pictures and videos of walking on my own, with different levels of harnessing, with walkers, walking sticks, crutches, a person guiding me, looking unstable, or looking strong in an order that does not make sense. Instead of progressing always the downward spiral happens all the time. I still need my wheelchair all the time which sometimes makes me feel like I am failing. It’s so confusing to the outside world.

I left Jacksonville in May of 2024 for Alaska which was our first family vacation in years. I was walking over obstacles, needing very little help, and doing incredible. However, when I was in Alaska I got a UTI that wouldn’t go away. I have been on IV antibiotics for most of the last year. I’ve developed so many systemic issues from them, and I went downhill fast after coming back to Pittsburgh.

This is where my chronic illness, infection, and disability come in because that is why my progress has been in an order that does not make sense. In between all of the pictures and videos I post is the grey. I’ve found some pictures where I am in the grey.

Right now I am in the grey. I have been in bed sleeping for over a month and in excruciating pain any time i’m awake now. I have only been awake for small amounts of time and haven’t left my house in weeks other than going to the ER and doctor’s appointments which I’ve had to cancel often.

I can’t move my right ankle or toes, but waiting on testing. I am awaiting MRIs of my spine which is terrifying. I have spasticity that makes me fall over which is why it is not safe to walk and need to use my wheelchair and makes me feel miserable. Also, I’ve been beaten down by my Behçet’s Disease and infections. There is so much grey no one can see or understand and life is just hard right now! The grey is not in many social media posts, but that’s my life right now.

I started posting during a 4 month hospitalization/inpatient rehab stay when I had wanted to keep others in the loop and it has become a place of prayer requests, hard times, and celebration that I have wanted to keep. After the 4 month hospitalization, my page has represented fun travel, intensive physical therapy, my service dog Only, celebration, and sorrow. However, these moments have happened in a very atypical pattern. My timeline of doing great and then crashing does not make sense because I do not share every detail of infections, other medical problems that I don’t want to share, and times where my body just doesn’t cooperate with me.

I have posted pictures and videos of walking on my own, with different levels of harnessing, with walkers, walking sticks, crutches, a person guiding me, looking unstable, or looking strong in an order that does not make sense. Instead of progressing always the downward spiral happens all the time. I still need my wheelchair all the time which sometimes makes me feel like I am failing. It’s so confusing to the outside world.

I left Jacksonville in May of 2024 for Alaska which was our first family vacation in years. I was walking over obstacles, needing very little help, and doing incredible. However, when I was in Alaska I got a UTI that wouldn’t go away. I have been on IV antibiotics for most of the last year. I’ve developed so many systemic issues from them, and I went downhill fast after coming back to Pittsburgh.

This is where my chronic illness, infection, and disability come in because that is why my progress has been in an order that does not make sense. In between all of the pictures and videos I post is the grey. I’ve found some pictures where I am in the grey.

Right now I am in the grey. I have been in bed sleeping for over a month and in excruciating pain any time i’m awake now. I have only been awake for small amounts of time and haven’t left my house in weeks other than going to the ER and doctor’s appointments which I’ve had to cancel often.

I can’t move my right ankle or toes, but waiting on testing. I am awaiting MRIs of my spine which is terrifying. I have spasticity that makes me fall over which is why it is not safe to walk and need to use my wheelchair and makes me feel miserable. Also, I’ve been beaten down by my Behçet’s Disease and infections. There is so much grey no one can see or understand and life is just hard right now! The grey is not in many social media posts, but that’s my life right now.

07/10/2025

I’m so thankful to be home this year for my birthday. It’s the little things that mean the most… Even though I have not celebrated my birthday in the way I would have liked this year due to my heath, thankful to be home no matter what. (This was posted yesterday (on July 9th which is my birthday), but never went through)

04/14/2025

It has been a painful and very scary month. I went to the ER on a Monday night (March 31st) with purple, ice cold, and excruciatingly painful lower legs and feet. The symptoms got so much worse every hour from when I started having pain that Saturday until Monday night. I had purple skin for a week before the ER trip, but did not have pain until Saturday. I went to the ER around 6 pm on Monday. I had messaged my rheumatologist Sunday night; she emailed back Monday morning saying it could be something benign, but also could be very serious. She advised me to go to the ER if the symptoms were getting worse at a rapid rate. The symptoms (especially pain) were progressing very fast, but my plan Monday morning after reading the message was to wait and see, but wait until at least Tuesday to go into the ER. However, my muscles spasms and pain got worse by the hour that day, I couldn’t take the pain anymore, and I was terrified. When I got to the ER around 6 pm, the nurse and doctor could not find a pulse in my lower leg or foot. The doctor had to use a doppler to get a very faint sound which meant there was very little blood flowing below my knees. However, the testing was normal in the ER. The vascular surgeon started me on a Heparin drip that night in the ER to thin my blood and admitted me to the hospital. The ER physician and vascular surgeon were still convinced whatever I had was vascular even when testing didn’t show it. My testing was also inconclusive because the contrast timing was incorrect on the CT angiogram The vascular surgeon that admitted me was especially worried due to having both Behçet’s Disease and Ehlers Danlos Syndrome which both have vascular complications. I did not know that the hypermobility type of EDS had vascular complications (we never talked about my EDS until the ER physician came to tell me what the surgeon said and the surgeon saw it in my records which I was impressed with). I woke up on Tuesday, after around 4 interrupted hours of sleep, and the color and temperature were much better, but the pain was still terrible. I started a new medication for the new autoimmune disease diagnosis, Raynaud’s Disease, Wednesday morning and stopped the heparin drip. The conclusion at the end of this hospitalization is that I am having some blood vessel spasming (vasospasm) that the vascular surgeon diagnosed as Raynaud's Disease and it’s secondary to my Behçet’s disease which can be serious. I am still in severe pain and I have found more answers in the past few weeks and trying some things to help. I may need more testing to make sure the physicians are treating this properly because I am still having severe symptoms. My arms may be affected too and nurses have not been able to draw blood or get an IV in, which could mean the vasospasms are happening in my arms too, but this is not definitive. I would appreciate prayers through this new autoimmune diagnosis.

03/04/2025

As I sat in an ER room on Thursday, waiting to get treatment for another UTI I have been thinking…

Over 3 years ago when my paralysis occurred my goals were always about being able to walk. I thought everything that comes along with paralysis would just go away once I was strong enough to walk. I was very wrong. There is more to paralysis than not walking. They are so hard to handle.

I get upset and frustrated often. My symptoms are getting worse. I walked last year in May and June. I was moving well after medication changes and the SCI Day program. It was the beginning of great things and the end of this nightmare… unfortunately this has not been true for my experience. I have the hardest time walking, persistent UTIs needing IV antibiotics, leg spasticity is worse, have not seen much improvement, and life is slowly fading away to nothing. These are the surface level of how I feel.

It is such a battle physically and mentally. The Ryan Shazier Fund for Spinal Rehabilitation has hosted adaptive climbing events for the past 3 years. The first year I was still in a power wheelchair, needed help with transfering, and could only use a pulley system. Last year, I was in the midst of a 4 month hospital stay. However, this year I climbed the real rock climbing walls and was even able to get my feet onto the holds. I wasn’t able to push through my legs. However, I could ground myself with my foot and the staff helped me with a rope pull.

Pictures and videos from now and my first time climbing have given me hope. I can move my legs, I can sit up on my own, I can get dressed on my own, and I can stand up with help. All of these things are HUGE in recovery, but I often forget how it used to be. I still need so much help, I’m dealing with complications caused by paralysis, and every day is still so draining and hard.

I look at the can't and not the can because the can’t is more prevalent in my daily life. Right now, my health isn’t good causing debilitating symptoms so that’s what I focus on instead of wow I just climbed a rock wall AND used my legs a little. I’m thankful for the opportunities I have to see these great steps of progress.

03/01/2025

It’s rare disease day (yesterday oops) and thought I’d make a post. When I was 18 and saw a new doctor who said I had “Jaclyn Lenhart disease” because my health conditions are all very Rare. The rare diseases that have changed my life for the worse are Behçet’s Disease and Stiff Person Syndrome. I’m going to talk about Behçet’s disease.

I was diagnosed with Behçet’s Disease when I was 17 which is a vasculitis that causes inflammation in the blood vessels (which are everywhere and I had all the clastic symptoms being ulcers on mucus membranes, inflammation in the intestines (Behcets biopsies exactly the same as Crohns so I am diagnosed with both), arthritis, skin rashes, eye issues, and pain. I had no idea Behçet’s disease could cause disease in the Central Nervous System until I woke up paralyzed. My paralysis is Behçet’s Disease in the Central Nervous System. It has caused havoc in my life even with the best Behcets doctor.

My rheumatologist (who came from NIH where she researched Behçet’s disease- wow that’s God working). Has been able to make medication changes which is why I’m able to move some now. I beleive if she didn’t prescribe this medication I would still be completely paralyzed. Hard work (SO much PT/OT)and along with the medication change was my perfect combo. I struggle significantly now too because of the other symptoms that come along with behcets. I also think you have to “fake it till you make it “!

There are still so many ups and downs. I am very medically complex (even before paralysis) with a primary immunodeficiency, Behçet’s Disease, POTS and Gastroparesis from Covid, as well as Ehlers Danlos Syndrome and Stiff Person Syndrome (and who knows what else).

Jaclyn’s Journey

04/25/2026

04/12/2026

03/16/2026

03/01/2026

11/03/2025

07/23/2025

07/10/2025

04/14/2025

03/04/2025

03/01/2025

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