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

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).

01/21/2025

*videos and pictures in comments
I’m sorry for those who’ve wanted to see an update. I’ve posted some, but trying to be positive. I have had nothing positive to say. Some positive things are happening now so I am ready to share a lot of what went on because it was a good week and for the first time since July I was able to walk this past week with very little help!

I’ve been battling lots including a constant UTI and serious fungal infection. l have not felt well since getting sick in Alaska even though I had been treated with 5 rounds of 2 week long IV antibiotics as well as IV anti fungals. This has been from May until the first week of January. I still do not feel like myself.

I’ve been pretty miserable, I have severe pain, my spasms are progressing (they are starting to lessen so my biggest prayer is that it continues), I’ve been sleeping all the time, haven’t been able to eat much, and my family was at a loss.

My family went to the beach starting at the end of November for 6 weeks. However, a few days into the trip I ended up being incredibly sick. I blamed it on exhaustion because I went on a cruise the week before. While there, I slept 20ish hours a day, and only woke up to spasms and started getting delirious. I only left my room in the house we rented except trying to eat. I left the house a few times to go out to eat. I could barely stay awake some days just for dinner. (it was Thanksgiving, Christmas, and New Years all during this).

The hours awake included lots of tears with bad symptoms and I had no clue where to turn for help. I was too weak to sit up at times. After 4 weeks of being sick while at the beach, I kept having worsening vitals and symptoms. I finally went to urgent care where I had a severe UTI, which wasn’t surprising since I had basically had one since May. My mom was able to talk with my Infectious Disease physician and she sent IV antibiotics ASAP.

When I finished 2 weeks of 24/7 IV antibiotics I felt a little better going home. I was finally able to see the beach in these 2-3 days after 6 weeks of being a block from it. Keep the prayers coming please because it’s such an up and down battle. It’s time for disney with aunts and cousins now 🙂

11/27/2024

I’ve said this before, but Disney cruises are my happy place, and now Onlys too. Like mother like daughter 🙂

It was such a fun week full of laughter. There were many things that were very hard because of my spasticity (either from my SCI or stuff person syndrome progressing) getting worse by the day!

I honestly didn’t realize how sick I looked after my 4 month hospital stay last year when I went on a cruise right after a 4 month long hospital stay. It wasn’t until I looked at the comparison of November 2023 and November 2024 that I saw the huge change! (went on a disney cruise 10 days after discharge… maybe a bad decision). Even though I feel awful a lot of times I don’t look sick like i did a year ago.

I was able to enjoy myself most of the time going to meet characters that Only loved, going to broadway shows, and the dining was great with an amazing service team. I was able to rest too because I get tired so easily.

Thank you to everyone who made this such a fabulous trip!

11/02/2024

When I woke up paralyzed, I tried to convince myself something small was wrong. I was on TPN (look at my last post). Deep in my heart I panicked and I was not okay at all, but tried not to show it.

My mom and I went to the ER to check my bloodwork and see what was going on. I thought I’d be able to walk out of the ER soon after. My labs were normal, I was too sick to do or think anything, but have been terrified of so many things since.

No one in the ER had a clue what was going on. I was admitted to the hospital immediately where I saw a neurologist that ran so many tests and I wasn’t sure what was going on.

Why am I dropping my phone every time I tried to pick it up, why is it getting hard to breathe, why can’t I sit up myself and what am I supposed to do because I can’t move my legs. I spent almost 2 months in the hospital and inpatient rehab. I was diagnosed with cervical myelitis. That was soon changed to Transverse Myelitis and then Central Nervous System Behçet’s Disease (basically an autoimmune Spinal Cord Injury in my neck).

I was sent home knowing nothing about my future other than that I was getting a “custom” wheelchair and braces “just in case”. The “just in case” is my reality and I was paralyzed completely until December 2023. I moved my legs for the first time. I stood up and walked in April which is a miracle.

However, the ups and downs have haunted me. Since May I have been struggled with UTIs, fungal infection, and constant spasticity. In May and June I did my best to go on with plans. This included 2 trips to New Jersey and three weddings.

Since July, I have been in bed sleeping and having spasms other than trying to go to appointments and physical therapy. I have had a hard time standing, my spasticity is horrific, I can barely stand, and have been told not to walk because of many falls.

I made 20 steps forward in Jacksonville only to take 15 steps back. I do rely on my wheelchair still, but I have been able to use a manual wheelchair. That is today and every minute brings something different. All I can do is believe I end up physically better than I was in May and progress from there! It’s about time to to enjoy LIFE again💚

11/01/2024

I did not fathom life could get worse after having to be on TPN (IV nutrition) unable to keep anything down (even a sip of water). This started with severe COVID in November of 2020. I tried so many things to help including medication, protein drinks, feeding tube, and then TPN.

Constant pain, vomiting, and many other symptoms were at times intolerable. I was diagnosed with Gut Dysmotility and Gastroparesis. I was hospitalized so many times from COVID (2020) until Inpatient rehab (2021) over a year later. I still struggle with these conditions to this day at different severities.

I was in the hospital for 2 weeks (August 18th- September 2nd) and the TPN was started right after being admitted. I had to start fall semester late. None of my semesters were typical due to transferring, taking breaks for my health, and then COVID. I was in the hospital starting October 8th for another 3 weeks.

I was finally starting to be able to “fake it till I made it” in between hospital stays and experienced a month of fun and joy (even being unable to eat or drink). On October 6th I ended up in the hospital. I went to class a couple days and then my life was flipped upside down in ways I couldn’t imagine.

I went to class for a total of a little more than a month that semester. It’s hard to grasp that I went to class on November 1st and I wouldn’t step foot into a classroom for 3 years (and counting).

I had a procedure November 2nd, returned home the same day with the inability to walk thinking the anesthesia was still in my system and ended up in the ER on November 3rd paralyzed. I was in the hospital about 6 weeks.

Reflecting on the months (especially October when I was living life to the fullest) leading up to paralysis is really hard and looking at pictures is even worse. However, it is important in my grieving process of loosing my legs and parts of my life.

Here’s to reflecting and looking back. Not to judge myself or look at it negatively, but to see where I was then and where I am now. Thankful for the people who stayed with me through all the highs and lows from these pictures💚

Jaclyn’s Journey

11/03/2025

07/23/2025

07/10/2025

04/14/2025

03/04/2025

03/01/2025

01/21/2025

11/27/2024

11/02/2024

11/01/2024

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