It’s been awhile since I’ve written an update, but as I mentioned last time I’m posting mainly on YouTube now. The link to my channel will be at the bottom if you are interested. For once I have some GOOD NEWS! As always it will be a long post because its been several months and well… my life is crazy!

I do have a few not so great things that have happened so lets get those out of the way first. As you know I have a feeding tube in my abdomen called a GJ tube. I have had that for seven months and that is how I get fed. I have had SOOO much trouble with my tube but I am not going to recap all that, you can check out my last post for those details. right after I got the tube replaced after the last incident which required emergency surgery, within 3 weeks it broke. YES IT BROKE!!! I swear I have terrible luck! But I was so stubborn because I’ve had to have it changed so many times I refused to do it again so soon. So I literally TAPED the tube up for 2 months. This caused lots of leaking and waking up in the middle of the night covered in formula and intestinal bile. Yep, its about as much fun as it sounds!  After 2 months I gave up, I had to get it changed. In the past they’ve done it surgically so I was asleep. This time however, I was going to be awake in the radiology department. So the day we got it changed was super easy! I was very nervous due to PTSD (I am going to be making a whole blog post about that today too, so it might already be posted when you’re reading this) so they gave me nitrous oxide or laughing gas and the procedure took a grand total of 14 minutes! Super fast, painful but not terrible, and I went home right after.

Unfortunately it seems like nothing ever just goes perfect, theres always a catch. Only 5 days later the ballon holding the tube in place popped and the tube started sliding out of me! I had to push it back in which was very painful! So that meant it had to be changed again. I had to tape up my stomach and pretty much not move until they could change it 3 days later. Luckily that change was even quicker! And I am happy to say its been several weeks and I still have a perfect tube, so thank God for that! We all prayed seriously hard that this one would stay functional for a very long time!

Now for the good news! I was nominated to be a recipient of the Tim Oath Memorial Foundation this year. They hold a fundraiser and the money is split between the recipient kids to put towards medical bills, equipment, or whatever they need. That fundraiser was last night and it was amazing! I made art for the silent auction and it was going so fast! Everyone loved it, which made me so happy. When I got sick and all I did was lay in bed, I spent hours and hours on art to finally feel like I could accomplish something again. Looks like all those hours paid off! I met so many kind people through TOMF and I want to thank everyone who came and donated. You are truly changing lives for the better. For me the money is being put towards an adjustable bed. One where the knees go up and the head of the bed sits up. I spend most of my time in bed and with my bad joints this is going to be amazing! I dislocate both hips when I sleep but it helps to lay with my knees up so hopefully it will help that along with easing pain while sleeping. We are so grateful for TOMF and everything they are doing for us.

We have been trying to get me back on the Growth Hormone shots I took for 10 years as a little kid. They always helped my muscles be stronger then and when I came off them my body got way weaker and my joints got worse rapidly and haven’t stopped since. my hormone levels were also severely low so those need the medication as well. The hope is that by going back on GH shots that I can build more muscle and get my joints a little stronger again. Which could reduce some of my severe daily pain. Its in no way going to fix me or make be completely better but right now I can’t build muscle without injuring myself, thats how damaged my body is. But if I could just get a LITTLE stronger it could help stop that decline in my joints, and protect the few that are still “decent”. I say decent because they all aren’t great but some are still functional compared to ones that are permanently dislocated and hanging. Yes, I do have joints literally hanging. So in order to get back on shots it takes a long time. We’ve been going through the process for many months. We had the testing redone, we filed the appeal and have begun fighting with insurance etc. but after many months the meds showed up on our porch! We had no idea they were coming as we’d never heard anything from the doctor, but either way we all did a mini freakout happy dance! That was at the very end of January by the way, So I’ve been on shots for about 2 months. This is hopefully just another step in the right direction!

The biggest improvement we’ve made since I last updated is the new plan for my pain. I dislocate over 30 joints every single day. My body is so fragile I tear tendons and muscles frequently, I wake up injured in the morning with no idea how I got hurt. I get specific “hip pains” that are so excruciating they leave me crying unable to really get out of bed. For those instances I have strong pain meds to help but I am not someone who likes taking those. I wait until its unbearable because they make me so sleepy then I can’t do anything anyways. So awhile back when we were trying to figure out what was wrong with my tube (the time I needed emergency surgery), my doctor prescribed a pain med to try and help. But it was a much milder pain med than the ones I had at home. It worked so so well without the negative effects of narcotics! We talked to my pain doctor at our next appointment and told her about this new medication. Like I said before I had strong meds at home but rarely used them because of side effects and the fact that those were for unbearable pain not just my daily pain. But as we Talked with her we came to the conclusion that I don’t have any quality of life right now. I lay in bed all day because of pain, which makes my body weaker, which makes my joints worse, which causes more pain, and its an endless cycle! In order to stop that cycle I need to be able to get up and move more and get stronger. So with this new medication called Tramadol which is a very mild narcotic I was able to function! It doesnt make you dizzy or drowsy like the other ones I take, and it doesn’t make you confused, I feel normal other than being in less pain. We originally just hoped she’d switch my meds to these instead of strong ones for my pain episodes but she wanted it to be a daily med. We needed to get pain under control so I can get stronger and help my pain get better and this was there perfect medication to do just that.

Its been about 2-3 months since I started that and it was life changing! I was in severe pain all day every day and suddenly I wasn’t in pain all day! I’ll say that again. I’M NOT IN PAIN ALL THE TIME!!!!! It had been YEARS!!!! Just ask my family how many times I cried happy tears. We ALL cried happy tears at the fact that I have a quality of life again. Im 17 and its not fair to live like a bed bound 80 year old hobbling around the house groaning in pain! I was instantly able to start doing more. I still spend a lot of time in bed but I’m able to walk more, do more physical therapy, I even started pool therapy!! I get out of the house so much more and I can actually just breathe a sigh of relief! So when I’m out of the house and people come up to me and ask me how I’m doing? For once I can tell them “I’m good” and mean it. I don’t know about you but that is a really big deal to me.

Lastly I have been doing a lot more with my Youtube channel and it is really taking off! I am at over 22,500 subscribers and over 1.6 million views collectively! How amazing is that! YouTube has given me a voice and I am using that to spread hope and positivity to others. I get asked how I’m so positive and the answer is my hope and trust in God. I always knew he had a reason for this suffering, but I now believe its because he is going to use me and use my pain to reach others. Im currently working on filming my testimony to share. God has changed my life so much and I know others need to hear that too. If I could only tell others suffering (illness or not) that this pain isn’t meaningless, your life isn’t over, there is immense stregth and joy found in the Lord. Far greater than any pain on earth. Not to say that life is all butterflies and rainbows when you trust God OH NO! But he gives you the strength to get through it, the hope that one day this pain will end or it will get better, and lastly the Joy in life despite the pain. So I will continue to use this platform he has given me, and its not just sharing my faith. I post fun videos, I share about my different health conditions and explain them, every surgery I have or hospital stay is filmed. Obviously not the surgery itself but I film some of my time in the hospital so others can really understand what I go through, or if they are going to be going through that they can know what to expect. My channel is called Life with Stripes (like zebra stripes, the zebra is the EDS mascot). I also made a Facebook account for those who don’t have Instagram. That way I can let all of you know when I post a new video. Here is those links.

Youtube channel >

Facebook Page >

Anyways I know this was a REALLY long post but most of it was good, so theres that! Thank you guys so much for taking the time to read this and for supporting me. I couldn’t do it with out all of you. So many people ask what they can do to help and there are a few things! PRAY! Thats the biggest one! I believe in the power of prayer and the more the better. Also, if you see me out or at church or something, come say hi! It makes me so happy when I get to talk and even pray with you guys. If you read all this then wow, I applaud you 🙂 Thanks again for all the support. I don’t know when i’ll post again but if I’m quiet on here, there is usually updates on YouTube. I hope things start improving with all these new changes but either way I will fight on, and I’ll do it with a smile on my face AND JOY IN MY HEART!!  (most days anyway 😉 I’m human)

One thought on “GOOD NEWS!!!

  1. Renee Schemer

    I have talked to your mom through the years regarding IGF1 deficiency, she has been my rock and information source for years. I am so proud of you using your experience as a teaching method for others as well as hope for others. I pray for you and think of you often. I give you and your mom so much credit, I truly believe getting on GH will help. You will be in my prayers tonight, sending you and your mom a hug.

    Renee Scherer

    Sent from my iPhone



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