I’m not sure how to even start this… You don’t really get any prep on how to explain that after 26 years of having a functioning body that now you simply don’t. The same legs that have carried me and arms that lifted me are no longer properly functioning, and I’m still processing that myself so having to explain it to someone else is simply agonizing. There’s strength in vulnerability( a lesson I’m still learning ) so I’m going to  do my best in being vulnerable and raw about where I’m at and how it started.

If you want a long story short I’m disabled and have a ton going on medically that I’ve refused to ask for any help with because everyone is struggling but I’m humbling myself and asking for help if you’re able and willing. Your thoughts, prayers and kind words are always appreciated too!

The first time I really became aware that something wasn’t functioning properly was in December of 2022. My friends took me to dinner and then to the huge Christmas lights/wonderland display on the coast. We start walking through the different lights and set ups and I realize about 10-15 minutes in that my right leg was not wanting to pick up to take a step. I didn’t want to make it a big deal so I grabbed my pants leg at the knee and was manually picking my right leg up and moving it. We ended up leaving early and after some rest, I was able to use my leg normally. I continued on with life with no issues other than fatigue and hurting muscles (I worked retail so just chalked it up to that.) Then March 2023 comes around, and I find a hard knot under the skin on the bottom of my left leg. It didn’t hurt and everyone was like,  “Oh it’s probably nothing but a cyst or whatever and because it wasn’t causing any issues, I didn’t stop to go to the doctor (bad habit on my part), however later in the month of March or early April the spot started to become red, angry, and inflamed. I also had hit my other ankle getting into my car and so it also started to get hard and angry. Finally, I go to the doctor because I’m having enough issues between the major fatigue, muscle spasms, and now my legs that I know something isn’t right. This was the most belittling doctor experience I’ve ever had. This man, after I explained to him everything that was going, abnormal labs, and an irregular heartbeat tells me that all of it is because I’m overweight so he’ll see me in six months when I’ve lost weight. He also made me severely uncomfortable the entire appointment.  He kept putting his hand on my knee/lower thigh and even asked me if I had any hidden tattoos. I did not go back to see this man. I did end up going to the dermatologist who took a biopsy of the knot and diagnosed me with Pannicuilitis (something that I came into the office with knowledge of and specifically told them I believed that was what was happening, and they brushed it off and didn’t think it was that). Okay I know the stories long but hang in there the journey has been longer. That summer my asthma that only bothered me in changing seasons came back with a vengeance, and I start being treated for asthma year round. I didn’t see any other doctors the year of 2023 because prior experiences had left me a little scared, but I continued to get worse. By the end of 2023, my little knot had spread down into part of my ankle and up my shin? and I was majorly inflamed in both ankles/legs. When 2024 rolls around, I’m in one of my best friends wedding, and this really sparked up the progression of symptoms. I had to sit as much as possible and was severely unstable on feet after that weekend. I immediately realized that something was seriously wrong, and I needed to find a primary doctor so we could figure it out. I did my research and ended up finding the best internal medicine doctor who made feel so seen and heard from day one and quickly jumped into running tests and sending me out to specialists but it all seemed hopeless because my labs were mostly coming back normal for the things they were testing for. We knew I had a positive ANA and that something autoimmune was happening, but we couldn’t find any concrete answers. I am a master researcher and was doing all my own research on the side so that when I got in with certain doctors, I had somewhere to lead them. Between February 2024- June of 2024 I saw my primary every two weeks, a rheumatologist, endocrinologist, hematologist, another dermatologist, and had so much blood drawn but no one had answers. During this time, I started to use a cane, was having tremors in my hands, I was also having what I thought was bad brain fog from a medication that we were trying to see if it helped my symptoms (spoiler: it did not). Later I found out that the brain fog and spacing out were actually me having absent seizures. In early July, I ended up having to take leave from my job because things had gotten bad.  My primary realized we were dealing with something neurological, so he referred me to a Neurologistic who immediately sent me for MRIs which I got middle of August. I came home for visit after my mris and ending up having to major seizures back to back both leaving me unable to move my body from the neck down for 10-20 minutes after coming out of the seizure. Boom- driving privileges revoked, so my mom had to drive me to the Coast for what ended up being my last appointment with my primary as we discussed the results of my mri, and discovered that I had severe Chiari malformation and lesions on my brain leading us to believe that my symptoms may be from ms so he ultimately told me that it would be best for me to move home where I would have someone to help because I was having bad falls and seizures, and he didn’t feel I was safe living alone. So Labor Day weekend of 2024, I officially got the news that I was moving home which was devastating because I had finally started setting roots down and making the Coast my home. In December, the had brain surgery for my Chiari 1.5 malformation which my neurologist believed was the root of all my health issues. However, once again I was disappointed. Though my headaches and absence seizures have tapered off, it didn’t help with my movement, balance, and inflammation issues. Since this time last year, I have a new neurologist, neurosurgeon, neuromuscular doctor, a special optometrist,  a retinal specialist, and pt/ot. After my mom and I started to fiercely advocate for finding a cure, I finally got a diagnosis in February 2025 of CIDP, chronic inflammatory demyelinating polyneuropathy,dare you to say that 5 times in a row. Over the course of this year, I also started having issues with my eyes and losing my vision even with corrective lenses- surprise, surprise another autoimmune disorder pan uveitis, or  inflammation of the complete middle layer of the eye as well as cataracts from all the steroids I’ve had to take over my lifetime… intersstingly, the treatment for uveitis is… you guessed it.. steroid shots in the eye and steroid drops which will further my cataracts leading me to need cataract surgery sometime in the next 5-10 years. I’ve had to get a custom electric wheelchair made because cidp affects your peripheral nerves it has caused major loss of strength and muscle in my arms and legs. I have paraparesis of my legs and my arms are extremely week and unstable. I’ve had countless doctor appointments, lab work, nerve test, a port placed for my IVIG infusions, and I have so many prescriptions it’s insane and insanely expensive. Needless to say, if you’ve made it this far my life has been in a downward spiral over the last two years and I’ve been able to scrape by and pay for everything without asking for help because I am extremely stubborn and struggle with asking for help. I’m on social security disability now and have a very limited income. My parents are having to remodel our house to fit my needs, and I’ve hit a point where I need help so here I am, telling you the whole ugly truth because I’m at loss as to where to go from here. I haven’t wanted to ask for help because I am highly aware of the fact that we are all hurting and struggling, but I need help. There are medical things needed in order to make my house more accessible, my mom has to get a tow hitch installed and the lift gate which is going to cost around $2000 but is needed for me to be able to live an accessible life.  I’m confined to my bed most of the time, and it’s extremely lonely. This all has been so chaotic and obviously unplanned, and I feel like I’ve lost complete autonomy because I can’t bathe alone, I can’t go anywhere alone, I’ve not been able to go see friends or go out with them because I don’t have the ability to bring my wheelchair with me. I, essentially, need assistance in everything I do now and anyone who knows me knows this is my worst nightmare because I’m highly independent. I’m still learning that it’s okay to ask for help even if it makes me you want to crawl out of your skin. I’m asking for help so I can regain some of my independence back. The things I need will make navigating my home and being able to use the space more accessible. If you’re able and willing, I appreciate any and all help! But if you’re not able ,that is totally okay! I’m always appreciative of thoughts, prayers, and kind words too (it all helps in one way or another)!

Love,

Ali