Life and Health Update Post Miami Swim Week 2022
It has been a while since I have updated you on my life and current health status so I wanted to take the chance to do that while I felt compelled to share. Sometimes I choose to isolate myself from social media because I am having a hard time coping with my current physical state. Honestly, it took me a while to even accept where I am at today.
I have shared a lot in the past about my health challenges and my journey to seeking healthier solutions to managing a chronic disease.
You see, I have been in a major legal battle for the last 3 years of my life. While I cannot share the intimate details of my personal life situation, I can continue to share my experience and knowledge with managing a severe autoimmune disease. I will continue to be as open as I can be and when the time comes, after this coming October, old content related to my medical condition will be rereleased.
I have been on all of the medications you could probably think of to help manage a severe autoimmune disease like Rheumatoid Arthritis. I have also managed naturally at different times through out the years.
On July 17th 2022 I flew to Miami Florida to debut my latest collection to be shown on the runway at my very first Fashion Show with Flying Solo NYC. I was not on medication during this time. My disease was in a very active flare, meaning I was incredibly inflamed and partially debilitated (mainly in my hands and feet). I was able to manage with a ton of Tylenol and Advil, I mean a ton.
The max amount of Advil you can take is twelve pills a day. I was taking four Advil 3X a day and four Tylenol in the morning and four Tylenol at night (this is not a recommendation for managing a severe autoimmune disease!) This is simply something that I was forced to do because the biologic medication the doctors had me on prior was not effective. I was suffering greatly from a drug called Leflunomide.
What is Leflunomide?
Leflunomide is a medication used to treat rheumatoid arthritis, a condition in which the body's defense system (immune system) fails to recognize the body as itself and attacks the healthy tissues around the joints. Leflunomide helps to reduce the joint damage/pain/swelling and helps you to move better. It works by weakening your immune system and decreasing swelling (inflammation).
Leflunomide, was approved for treatment of rheumatoid arthritis in 1998. During the following years, leflunomide was used in various preclinical studies as a potential cancer treatment; at the same time, more mechanisms underlying the anticancer effect of leflunomide were identified. Thus, leflunomide has been identified as a potent anticancer drug.
Turns out not everyone reacts to medications the same. For years I was on Humira, then Methotrexate, then Rinvoq, then Orencia, then Leflunomide...nothing has worked consistently...I could feel my body shutting down on itself. I could feel my joints shredding 24/7 all through out the day. There was nothing that I could do to make it stop. I was stuck in a consistent systemic flare.
Through my pregnancies, deliveries, young motherhood to divorce up until Miami Swim Week and after...all of this pain, 24/7, non stop.
I don't say this to scare anyone... this was just my reality. Hopefully for you and your loved ones it never will be. If it is you or one of your loved ones, I am here for you <3.
When starting on a new biologic we are told it can take a few months for the medication to take effect. So we sit and wait...in pain... if the medication we wait for does not even work once the few months is finally up - we sit and wait in pain for the next medication to take its effect. It can take years to find a medication that works for you. Sometimes even after you find something that works for you, it may stop working and its back to the drawing board. It can feel like a never ending nightmare induced flaming hot rat race. That's what it feels like when your joints are shredding...flaming hot miserable pain.
All in all, I had a job to do for Miami Swim Week 2022 and was not going to let anything get in my way. Not even my eroded bones. So I went. I did what I had to do. I made it happen and then when I got back home from the rush of MSW it was time to get back to reality and figure out what I was going to do about my health. So I booked an appointment to see a new Rheumatologist and a wrist surgeon, drs suggestion.
There are a few places in my body to this day that I can feel are not right. I know that the damage that was caused while I was unmedicated and on mediation that was not working, because I have suffered from physical damage during both stages, has caused major physical deformities. I don't know if it is muscle, joint or bone right now. It could be all three, I don't really want to know to be honest... and that's why I am putting off the shoulder X-ray that my doctor ordered I have taken a few months ago but I am in pain. Every single day. The question is - how much.
Today, I have finally found a medication that has helped me to become stabilized. After Miami Swim Week, I made a point to get my health under control because I was barely getting by. To tell you the truth, it was solely the adrenaline rush and the vision of my future for myself, my kids, my family that got me through MSW. I could barely walk because the bone erosion in my feet across the top of my toes is so bad. I didn't know if I would be able to walk down the runway. Luckily I was able to but the pain and debilitation did prevent me from attending the Flying Solo After Party to its entirety. I was able to get there but I had to leave 20 minutes after because of how much pain I was in. By the time I left the party it looked like my ankles were falling out because of the way I had to walk in order for my feet to feel like they were not being stabbed with pins and needles.
Fast forward to today. I have a new amazing doctor who I love. She listens to me, she is compassionate, she is knowledgeable and she does not force me to take anything that I am not comfortable taking. Having a severe autoimmune disease can destroy a person. There are so many unknown and scary variables that play into the way we have to manage and change our lives as we know it.
The drugs, the pain, the questions and confusion from friends and family. Some days we feel well, others we don't. Today, I am functioning at 75%. Much better than before MSW where I would have said I was functioning at about 30-50% on a good day. The medication I am on today is actually working. I am not 100%. I can still feel so much of the bone erosion that is there from previous flares but I am in remission right now and for that I am so incredibly grateful.
I have such a long way to go. My main goal is still to receive a Stem Cell Transplant and localized injections as soon as possible. I am no where near where I want to be but I know I am so much better off than I was even just a few months ago.
After visiting the wrist surgeon they suggested I do a three or four way fusion meaning fuse my wrist bones together, remove one of my bones or snip a nerve through surgery to relieve the pain. For months I was feeling the pressure of my bones rubbing together with little to no cartilage there. I had fought the pain for so long but after MSW I could not ignore it anymore, in fact the pain was so bad one day I admitted myself to the ER. They took Xrays in the emergency room and this is where I was told about how badly my disease had progressed.
You would think that if someone is on medication they are fine right? Wrong. Medication is not a fix all solution. There are many issues that can come with pharmaceutical drugs. I unfortunately happen to be someone that has been the result of this. I am not saying all medicine is bad but it is something to be taken seriously by both the patient and the medical professional prescribing. I am truly disappointed in our medical system in how they care for autoimmune patients.
I am grateful and thankful for the doctors and medications that have helped me to find some relief. I am going to continue to seek healthier solutions and receive regenerative medicines until I can successfully ween off of all pharmaceuticals. I am on the least invasive treatment plan right now which has been very exciting!
Regardless, this news was very difficult for me to hear. Hard for me to accept but ultimately something I would never do.
I took a long break from social media during this time for these reasons. I will frequently do this because of how I manage my anxiety and depression that is caused by these personal life struggles and I'm okay with that. Hopefully you are too.
Here is a photo of my X-rays showing my current physical state in just my wrists. Keep in mind, Rheumatoid Arthritis (mine at least) is systemic, meaning it travels and affects my entire body. I can feel this kind of pain almost everywhere, specifically my shoulders, wrists, and feet but this will give you a visual of the damage that has taken place underneath my skin.
If you come across this post and have a medical background, can read X-Rays, have connections within the regenerative medicine field i.e. stem cells/ MSCs, PRP, or know of someone that successfully administers Osteoblasts or Osteoclasts please please please comment below! I would love to connect with you and explore every option I have! In addition, I want as many resources as we can get to better help our community to locate the appropriate medical professionals they need for their specific condition.
It is so incredibly important for you to have boundaries with your medical team depending on your level of comfort when it comes to deciding on your specific treatment plan. After going through the gaunlent of medications for the last 10 years I know very well what I am and am not comfortable taking.
For instance, I will not take steriods, pain killers, chemo drugs or have surgery unless it is an emergent situation. For routine treatment I opt for the most natural, least invasive drug options possible. While that is close to impossible while managing a condition as severe as RA. It is still possible. You do have options when it comes to your own health. Some medications you do absolutely need because with out them you cannot function properly while others you can experiment with, swap for generic / similar brands if you are having unwanted side effects. This is a common issue so please do not feel discouraged or stuck. Always consult with your doctor before making the decision to stop a medication if this is something you are considering!
There are many ways to treat autoimmune diseases. It is up to you to find what works best for you. Your doctor is a tool to help you get to where you want to be. The only person that knows what works best for them, is you. Be open with your doctor and be honest with yourself. If you do not feel 100% or are knowingly suffering, get help! Find another doctor if you are not seeing the results you want. You do not have to hurt for forever.
Managing a severe autoimmune disease is an every day struggle...literally. I can feel like I am on the moon one day and then 10 ft under the ground the next. How well I physically care for myself the day prior is how well I will feel the day after. It is an every single day conscious decision making exercise. Something I have only learned through experience of managing this condition. If I do not get good sleep, the next day I hurt more than I would if I had. If I eat poorly (known inflammatory foods) like bread/pasta (gluten), processed foods, refined sugar, red meat, etc - I hurt the next day. Sometimes a couple hours later, that's how active my disease is. I can become swollen and disabled literally within minutes of ingesting an “allergy” I will call it. Really just wild quiet honestly.
The new biologic I am on today is helping to keep the majority of my symptoms under control. I can barely feel the damage that is currently in my wrists because the medication is basically numbing me. I have to go in for a 45-60 minute long infusion to recieve my biologic every four weeks. If I miss an infusion, I am hurting. I have to stay ontop of this treatment plan right now to avoid further damaging my joints.
Rheumatoid Arthritis left uncontrolled can leave a person in a wheel chair or worse, kill them. I did not realize my disease was this deadly until a doctor said to me "You don't want to be fed with a spoon. If the inflammation gets to your neck, you will become paralyzed." No I surely do not want to be fed with a spoon by someone else. Unless it is a hot date and they are feeding me delicious treats overlooking the ocean. Otherwise, we can leave the spoons out of the conversation. I don't want to have my bones fused together either. For now, I will keep exploring my options...
I wore my brace for a few months until my latest medication started working. I wore it all of the time. When I woke up until I slept, sometimes even while sleeping. My physical therapist suggested I sleep in my brace then my surgeon said not to. Who really knows what's going on around here. I sure don't.
Here is a photo of me after leaving physical therapy. I have tape on my hand. This is a new technique my PT showed me. The tape helps to pull your skin back which released fluid, reducing inflammation in turn relieving pain. I went to Motion PT over a course of twelve weeks immediately after MSW. Two, sometimes three times in one week to help me become stabilized again. I cannot say enough good things about the therapists that worked on me. They have such an incredible staff, some of which I still keep into contact with to this day. They were amazed by how bad my joints looked after reviewing the X-rays taken of my wrists. They told me that my hands/ wrists looked like they were a 90 yr olds hands. I knew that already because that's exactly how I feel sometimes!
All in all, now that I am on a medication that is doing its job. I am happy. I am doing the best that I can and that is all I can do :) I could not be more excited about life and all of the things that I know are coming to my boys and I. I trust that all of this suffering has been for good reason and I am ok with that. I want to help others managing chronic disease just like myself and be there for those that feel alone, because I can promise you, you're not :)
I am going to have more Xrays taken of my hands, drs order and some of my shoulder now to because I am having major issues with my left side. I will take you guys with me for those Xrays so expect a vlog coming soon.
Miami Swim Week was everything I needed and more during a time where I literally felt like I was drowning with my eyes wide open. Swim suites are not my passion but I loved every second of that experience and would not change it for the world. I would do it over and over and over again and plan to. I have since been invited to reapply for Miami Swim Week 2023, New York Fashion Week, Vancouver Fashion Week and last but most certainly not least... Paris Fashion Week... The Mother of all Mothers...
My passion is design in general. I love all things creative about fashion. I have designed my own pair of sneakers, a medical grade face mask, The Boot and Bag Shaper that is now Patented with the US Trademark office, our swim collection and now our latest collection of supplements, MEUTOPIA :) which is growing every day with new product ideas and launches.
I am currently working on a athletic line and on the side...manifesting Paris (and New York) Fashion Week collections :) not sure which one I will apply to first but again...I am in the midst of a major legal battle still to this day so with that...comes great financial angst and these projects are not cheap :)
All in all...you will see me on the runway again :)
New YouTube going more in depth about my XRays recently taken, coming soon <3 <3 <3
I love you guys so much :) if you have made it this far in my article, please know how much you mean to me 🤍🤍🤍🤍🤍🤍
I’m praying for you Maddie. Can’t imagine…so thankful Jesus is with you.