Trish's Journey with LGMD2a

02/24/2024

‼️ANNOUNCEMENT‼️ ‼️ANNOUNCEMENT‼️ ‼️ANNOUNCEMENT‼️
My bestie Chelsea and I are starting a Podcast! It's called "Don't Dis(My)Abilities"! It is a disability related podcast about real life struggles at home, shopping and dining, and traveling, summer camp life, and other random things we throw in there. We hope to have guest appearances as well. We want this to be fun but also serious when it comes to the struggles disabled people face everyday. First episode will be out soon. So stay tuned for that announcement. We hope our family and friends will support us on this journey. We are very excited.

Logo designed by: KK By Design and Her friend(I don't have a name sorry)

01/14/2024

Ugh not how I wanted to wake up! In pain, a sore throat because I was on my back, and a bad dream ugh! Not sure I’ll be able to go back to sleep but gonna try.

12/29/2023

Freaking migraines ruin EVERYTHING!

12/20/2023

Hey everyone Trish here, I know I don’t post a lot here but I’m hoping to change that in the new year. I really want to not only advocate for the disabled community but I also want to raise awareness and support for Limb Girdle Muscular Dystrophy Subtype 2A which is the disease that I have. I would love to have your help and support to accomplish this goal. I appreciate every single one of you. You all are amazing!

Here’s how you can help:
• 1. Make sure you have liked/followed this page. To make sure my posts show up on your newsfeed you’ll want to add the page to your favorites.

• 2. Interact with my posts by liking/reacting and/or leave a comment. Either with an emoji, questions, or your experience.

• 3. Share all my posts with your family and friends.

09/14/2023

Hello everyone! I know I don’t post a lot on here but I’m definitely going to try and post more about my journey with this disease. So I have some really 📢 Exciting News 🎉 Mayor Homer of Ponca City, OK(the town I live in) has joined the fight against Limb-Girdle Muscular Dystrophy (LGMD) in the most unexpected and stylish way! 🤩 During our meeting, both my husband Justin and I wore lime green shirts to raise LGMD awareness, and guess what? Mayor Homer showed up in a lime green shirt too! Talk about perfect coordination! 🟢👕

Special shoutout to my bestie Allie's merch maker, KK By Design, for creating these awesome LGMD awareness shirts! 🙌

As a token of our gratitude, I presented Mayor Homer with a unique LGMD awareness coffee mug 🍵☕. Together, we're making a difference! 💪

Let's keep spreading the word about LGMD awareness and unity! 🌍💚

Please show your support for LGMD Awareness Day and wear lime green. Be sure to tag me so I can share with everyone! I appreciate all of you for supporting me and helping me raise awareness. It means the world to me.

Remember:
💚You are beautiful
💚You are loved
💚 You belong
💚 You are strong
💚 And I’m proud of you

07/28/2023

~First Year of Neuromuscular⛺️Camp⛺️Recap~
• 🗓️Date: July 9th-14th, 2023
• 🗺️Location : No Limits Neuromuscular Adult
Camp at MPH in Guthrie, OK!
• ⛺️Camp⛺️Theme: Camp on the Range🤠
• Activities: Casino Night🎰, Power Soccer👩🏻‍🦼⚽️, Fishing🎣🐟, Movie Night🎥🍿 and Games🃏🎲, Swimming🩱🏊🏻‍♀️, Zip Lining, Adaptive Archery🏹, Paintball, Talent Show🎤, and Dancing🪩💃🏻
• 📸Photos Courtesy of Allie, Jeanna, Kiki, Jamie, Jennifer, Kelley, Anna, and many more!

07/20/2023

More camp photos

07/20/2023

Last week I had the opportunity to attend a week-long summer camp for adults with neuromuscular disease. The camp is called No Limits Neuromuscular Camp at MPH and is located in Guthrie, Oklahoma. It was so much fun. I made lots of new friends and hung out with my friends I already knew. My absolute favorite thing I did was play power soccer. Everyone said I was aggressive and a beast. I also zip-lined for the first time in my entire life and I even got to go off the diving board. I can’t wait to go to camp again next year! Enjoy these photos from camp!

02/15/2023

Celebrating my 10th year on Facebook. Thank you for your continuing support. I could never have made it without you. 🙏🤗🎉

12/13/2022

My aide/besties 1 year old daughter having fun getting a ride around the house. When she here’s my chair start to move she comes running as fast as she can and sits down, makes herself comfortable, and off we go. She is so cute and funny. She used to be afraid of my chair and one day her momma sat her on the foot pedals and I drove around and now she loves it!

12/12/2022

These are my furbabies. They are the closest things to kids I have. We have been trying to get pregnant for the last 10 years and was blindsided with infertility. We did get pregnant in the beginning of our journey but sadly lost it early on. If and when we get pregnant he/she will be our rainbow baby. We have been trying to save money for infertility treatments because sadly they are expensive and not all insurance covers it. We are hopefully going to a fertility clinic at the beginning of the new year after we get our taxes back. Still going to be a long process though and a chance that the treatments fail.

11/25/2022

Happy Thanksgiving everyone! Here is what we had for dinner(not pictured is mashed potatoes and stuffing) and for the first time ever I made a pumpkin pie using my husbands great grandmas recipe. Hope you all had a wonderful day!

10/27/2022

Events that transpired on Sept. 22nd: I was getting ready for bed and I went to the bathroom and all seemed fine. Then all of a sudden I started getting cold sweats, nauseous, my right ear was ringing loudly and I couldn’t hardly hear out of it, I yelled for husband to bring me the trash can cause I felt like I was going to throw up. So I sat there with the trash can in front of me and waited, thankfully I didn’t throw up. My husband proceeded to get me up off the toilet and as I was standing there while he pulled my pants up the room started spinning, I got even more clammy, right ear was ringing again and I couldn’t hear out of it, then I think I blacked out cause the next thing I know I’m in excruciating pain and halfway to the floor, the pain was in the ball of my foot up by my toes and my left knee was twisted. Justin hurriedly got me back on the toilet. I started panicking and having a major meltdown. After sitting there for a min Justin got me back up and practically carried me over to the bed cause I wasn’t able to put any weight on my foot or my knee. My foot is swollen a bit and my knee won’t stop spazzing. I still can’t put any weight on my foot or bend it and if I try to put any weight on my knee it feels like it will give out at any moment. So I’ve been elevating my foot and keeping ice on it. Depending on how tomorrow goes and what my foot looks like I might have my husband take me to urgent care. I honestly have no idea how this all happened and it’s frustrating. I’m so glad my husband was off that day and thankful that he is concerned and helping me as much as he physically can.

Update- My doctor had me wear a holter monitor for 48 hours. He also ordered an X-ray for my foot. The X-ray showed nothing wrong except for some slight bruising.. The holter monitor showed that I had slight tachycardia and that was pretty much it. He said everything else looked fine. I will be starting a low dose beta blocker to see if that can help. He also wants me to keep a log of my blood pressure, heart rate, and my blood sugar. I go back in a few weeks to see if the medicine is helping and so he can review the log I’ve been keeping. Hopefully we can get some answers soon.

09/06/2022

This Friday I am having a D&C to remove a nodule on my uterus and to scrape my uterine lining. Backstory: In May I went to see my Obgyn because I was on my period for 30 straight days. So the doctor ordered bloodwork to check all my levels and to see how anemic I was. He also ordered an ultrasound to get a look internally. Bloodwork came back fine, surprisingly I was only slightly anemic. When they got the ultrasound results they wanted me to come in and discuss the results. What they found was that I have a bunch of cysts on my ovaries and he said that I have PCOS. My left o***y is slightly larger than my right but it’s nothing to worry about right now. The ultrasound of my uterus showed a nodule on the back of my uterus. He said by having that nodule it is adding a lot of extra hormones to my body so once it’s removed my body “should” try to regulate itself. I was going to have the surgery done at the hospital in my town but for whatever reason they don’t take my insurance. So I had to figure out what hospital took my insurance and then find an obgyn affiliated with that hospital. So I have to drive 2 hours to Oklahoma City to have the procedure done. I really liked the ob that I saw and he explained everything that would happen in a way that I would understand. They are going to send the nodule off to pathology to make sure it’s not cancerous because there is a slight chance it could be. I’m hoping it’s not. I’m very nervous and anxious about having this done but I know it needs to be done. If you could send well wishes, prayers, or whatever you believe in that everything goes as planned and that there are no complications.

06/15/2021

So I’ve been having problems with migraines ever since I was a teenager but they could never figure out the cause of them or anything. I’ve tried several medications in the past with zero luck. I went to the doctor a few weeks ago for a checkup and to discuss my migraines. He gave me a 2 samples of some new medicine to try and to my surprise it worked. So I will be starting a medication called Ubrelvy for my migraines. It’s a pill that I take when I feel one coming on. If it stops working or if I have too much trouble catching the migraines then I will discuss the possibility of a monthly injection. The hardest part is just catching the migraine at the beginning and stopping it before it gets worse. Hopefully I can get insurance to cover it since it’s an expensive medication.

06/04/2021

Find out more about my disease by visiting this website. Lots of great information.

Check Out Our New Website 💚
For years our website connected you to LGMD resources and information but it was time for a refresh!

We have worked hard over the past few months, and we are proud to unveil the new LGMD Awareness Foundation website. https://www.lgmd-info.org/ Please take a moment to explore our website which has become the “information hub” for the LGMD community.

05/19/2021

So I just got back from the clinical study. Everything went well, I am just exhausted from all the activities they have you do. I wasn't able to document anything while I was there because there was so much going on and for legal reasons they wouldn't let me. So here is how it went.
I arrived on day 1 and got checked in. Then I had to take a pregnancy test and fill out a huge packet of questions. The questionnaire consisted of questions asking if I am able to do a task and to what ability if I can do a task on my own or if I need help. Then I had to go to another room where they did the physical portion of the study. They asked me if I could walk and I told them no, they had me try to bring my knees to my chest which I wasn't able to do, they had me try to roll over on my side which I can't do without help, they had me try to sit up which I can't do without help, then they do a test where I pushed against this device to see how well I could do it, then they tested hand strength and last they had me blow into a machine to test breathing strength. Then after all of that was done, I saw the doctor and he did a basic exam and explained some things. Day 2 I arrived and got checked in. I filled out a page, they asked me how I was feeling, then they drew blood and took a urine sample, then I repeated the physical portion of the study all over again and then I was done. I also signed up to participate in the remote study, so in a couple of months, I receive the material to do the remote portion of the study. I go back to Kansas City in 6 months and then again in 12 months. Im excited to be participating in this study and I hope it leads to clinical trials for medications. After 2 days of activities and driving 4 hours there and back I'm exhausted. So I will be doing lots of resting over the next several days if not the next week. So that is how this study went. If you have questions feel free to ask and I will answer the best I can.

05/11/2021

We leave for Kansas City, KS on Sunday. Clinical study is a week from today. I’m excited and nervous. I’ve never participated in a clinical study before. My hope is that this will lead to a clinical trial for actual medication and that we get one step closer to a cure. But I know a cure don’t happen right away. But even a slow down in progression and the ability to regain muscle and strength would be super helpful. So we shall see what happens after this natural history study.
I will hopefully be posting lots of videos and updates during the study, so be sure to enable notifications so you don’t miss a post. Thank you all for following me on my journey.

05/08/2021

Update on the clinical trial coming up. Follow me on tiktok at htrish88!

04/17/2021

Decided I’d post a video instead of typing something out. Enjoy!

03/03/2021

In May, I will be going to Kansas City to do a clinical study. It’s a natural history study so no medications are involved. This will lead to future drug trials that are coming in a couple of years. I’m excited and nervous. I plan to do as many clinical trials that they will let me do. They already have medicine out for 2 other types of muscular dystrophy. So I’m hopeful that they can come out with medication for my type of muscular dystrophy. Fingers crossed

02/24/2021

Today I went and got my first dose of the Covid Vaccine. So far I’m doing good except I’m having bouts of nausea, we shall see how tomorrow is.