Holding on tight…

Holding on tight….. thats what I’ve been doing for the past month. Not gonna lie this past month has been rough. There were lots of times where I felt like I was going to drown and the only thing that kept me up was the support of my family. Let me back up a bit, in my last post I said that I had some important doctors appointments coming up. I had one appointment that went great! And one that went not so great. I met with a new Neurologist and it was a long but very beneficial appointment! She believes that she can help me get my POTS managed better. She gave me lots things to do between now and the next time I see her. I got compression socks, I started a new medicine for my dizziness, I started exercising in a way that is safe for me, and so much more. It is nice to feel like there is something that I can do that might actually change the way I’m feeling for the better.

Now for the not so great appointment. Tests confirmed that my stomach has gotten MUCH worse. My stomach can no longer handle any solid food. Getting calories in was a real struggle. If you want to know what I look like on 400 calories a day just picture a bear being woken up from hibernation… I wasn’t the most pleasant person to be with. I met with my GI and unfortunately there isn’t much we can do right now which really frustrated me. I had many low days where I felt very discouraged, But my family held me up through every dark day.

I am now getting about 1000 calories a day and I have some of my sparkle back. Things are still very hard and I struggle to get each any every one of those calories, but I have the fight back in me to try. I got so tired of fighting so hard but my will is back and stronger than its been in a long time.

Other updates, I have mentioned before that I am in the process of getting a service dog. The litter of dogs that my potential match is in gets back for final training in about a week! Hopefully if all goes well I can meet him/her and begin training. I also registered for a summer camp for kids with juvenile arthritis and Ehlers Danlos Syndrome. It is a 6 day camp and am so excited! I will meet other teens my age fighting very similar battles and I’m hoping to make some friends that I can really relate to.

After a long and hard month I am glad to say things are looking up. But even in the darkest of days God showed up in some amazing ways. One of the days that was really hard for me we went to the night of worship at church. We got there right as they played the last song. It happened to be my current favorite song that when I am listening to it I feel so encouraged. I can’t help but feel like God played that song for me that night. The song is called Deeper by Meredith Andrews. I will leave a link to the song and I encourage you to listen to the words because they are powerful. I will also leave a link another song which I have been listening to a lot. It feels like that song speaks right to my circumstances and gives me so much hope.

I thank you all for your prayers and I ask that you continue to pray. I believe that prayers make a difference. I have more appointments coming up and I ask that you would pray with us that they go well.

“And the prayer offered in faith will make the sick person well; the Lord will raise them up” James 5:15



One thought on “Holding on tight…

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s