This week (July 2nd) marks 2 years since I was admitted to the hospital by ambulance and found out I was basically dying (it took me awhile to come to terms with that sentence...) by the time I was released the end of the week I had a diagnoses of Crohn’s disease.
Thankfully I was familiar Since I have a friend who’s had it over 20 years and one of my best friends has UC (not thankful they go through it though❤️). In a way I felt relieved and free because after 7+ years of sickness I FINALLY had a reason why I’ve been feeling so terrible for so long.
So July 2nd in a way is almost like a new birthday to me, of course, many of you that know me know I love extending my birthday festivities, so why not😉.
This is a different kind of birthday though, I know it’s only the second one but each year leading up to it I am filled with anxiety, fear, frustration, but also in a small way still that relief and freedom I felt 2 years ago.
To be perfectly honest I’m not where I thought I would be in 2 years, I naively thought oh they’ll get me on this biologic and I’ll feel great in no time, now I’m pretty sure that was the high dosage of prednisone I was on talking🤪.
I should have known better, 1. Because my friend that’s had it for years still struggles and 2. Because my new GI doctor told me I’m one of the worst Crohn’s cases he’s ever seen, again, those of you that know me well know I never do anything small🤷♀️.
Let’s fast forward to year one, I was off prednisone(finally), had already had a horrible reaction to my first biologic and had moved on to my second, I was SO frustrated...I thought I’d feel great by the one year mark, I had been SO excited for all the summer activities I was going to get to do that for so many years past I was to sick to partake in. Well guess what, I didn’t get to do pretty much any of them...I did enjoy maybe about 10% of the things I wanted but definitely not where I thought I was going to be. If we’re being completely transparent here it’s been a struggle this past year, I’ve fought to find myself amidst all of the chaos that is my health, I’ve struggled to stay positive when everything has given me a reason not to, I was diagnosed with Alpha 1 (liver and lung disease, guess what...you can get liver disease even if you never drink, I didn’t know that one🙄), had numerous ups and downs, flairs, mostly bad days but some good ones sprinkled in there here and there, learned over and over again to put my faith in God, learned to let go of the small stuff and the things I can’t control, learned to let go of the friendships that instead of helping me were hurting me and causing me more stress than my body could handle, fell in love with my husband and his selflessness even more (didn’t think that was possible!), learned to appreciate the little things (literally, seeing Christmas lights with snow on the ground, listening to the birds chirp and the leaves blow in the wind, the comforts that we do have in our home even though some may not think they’re nice), I learned to be thankful for what we have and honestly even though most days are a struggle, that God truly does have a plan for me and everything happens for a reason even if I really have no clue what that could be right now other than to make me a stronger person.
Let’s fast forward to the 2 year mark now, honestly it’s not been fun, I feel like as this “birthday” approaches God just keeps giving me more things he knows I can handle😬. I most likely have liver cirrhosis (another liver disease, different than Alpha 1) still in progress of finding out the severity, after a minor procedure last week we’ve learned that the Crohn’s has worsened and the biologic (stelara) that I’m on is not working so we either 1. Have to find a new biologic or 2. Add an oral Crohn’s medication on top of my 6 week stelara injection (one year, after being on stelara at 8 weeks we moved it down to 6 in February to see if that would help, it didn’t.) or 3. Idk...I’ll find out when I have my follow up with my GI dr next week lol. in my hematologist terms I’m running on E so I’m having another round of iron infusions to (hopefully) give me some more energy because that’s pretty much non existent (most days I feel like I’m walking around like a zombie🤷♀️).
Im realizing that this road to recovery I thought I would be at is nowhere near the finish line and won’t be for a very long time, I’ve stumped my doctor a few times (again, go big or go home?😂), While I still stay hopeful I’m quickly realizing things are worse than I thought and there is no quick fix, I think about the future that have surgeries and most likely some transplants (praying by the time I would need them they’ll have even better medications so that maybe I wouldn’t need any) and it can get the best of me sometimes. But I also look around me at people that are older and even some my age that are battling cancer, watching loved ones go through cancer and lose the battle, worse disease or Heath problems and other things and realize that I could have it so much worse and that quickly puts my eyes right back at God and reminds me to be so thankful for the challenges he has given me. Even though this 2 year mark is so different than I thought it would look like I also see that it could be even worse, and for that I am thankful.
I feel like I’m coming into more peace this year even though as it approached I was still filled with all of those same feelings as last year I know that even though there is still so much unknown that there is also so much it has taught me and will continue to teach me and I know that I can encourage others when they are going through struggles whether it be health or something else.
I thank God every single day for the blessings he has given me and most definitely my support system❤️. I started a 90 day self healing journal that basically just helps you see the good and what you can change also, one of the things is finding a good support system, those people you can text and say I’m having a bad day, pray for me or someone to vent to, etc. and I realized that other than Joe and my mom I don’t like to be a “burden” to people and just in the last week I’ve had people that didn’t even know to the full extent what’s been going on recently tell me they’re here to listen and y’all have know idea how much that means.
I know people are always there but unless they’ve been through the same thing or something similar they just can’t truly understand or comprehend, it’s not that they don’t care, they just don’t get it and I’ve learned that that’s ok! I’ve had sooo many people the last couple weeks say “so what are you doing for work” or something similar and it brings back that gut wrenching feeling every time having to explain it all over again why I’m not working and closed my salon and said goodbye to so many clients that felt like family to me, I realize none of those people meant to be hurtful, they were just curious and I just make a joke out of it and say “I’m a stay at home dog mom” which they (the dogs) love of course lol.
But anyways, my goal for the next year is to find even more joy in the little things, not stress about the things I can’t change, not put pressure on myself, to rely on others a little more, and to find even more peace and continue to have faith in God and his plans for me. If you made it to the end, good job!😂 and thanks so much for listening! And always know, I’m here if you need to be that person who needs prayers or someone to vent to (it’s the hairstylist(therapist😂) in me that will always want to be there to listen when someone needs it lol). Most of all, I hope to be an encouragement and even if I can just help one person, that’s good enough for me❤️.
I’ve said this before, but I urge you to put your phones down (kind of ironic since I’m typing this on my phone, huh...😑) and interact with your friends and loved ones that are around you, don’t take those small things for granted because not everyone gets to have/do them and things can change in an instant. Don’t worry about the fancy cars, clothes, house, etc. because those are just THINGS they won’t make you feel better and you can’t take them when you go, but you can take the wonderful memories you made when you weren’t worrying about perfection. I’m just as curious as you are what the next year will hold, but I do know one thing, God will make sure it’s not more than I can handle(even if I don’t think I can😂).
Comments