A life/Crohn’s update...this is a long one so grab a snack and get comfy!
It’s been just over a year now since I was finally diagnosed with Crohn’s after 7+ years of suffering and not knowing why.
This year has been a serious roller coaster in every aspect and there is no way I would have made it through without my small circle of support and let me tell you, it is small.
Joe was trying to make me feel better about something the other day and told me I had a huge support system and a lot of people that care and in some ways, yes that’s true but in others it’s so far from it.
It’s easy to comment on a Facebook post and say the classics - “I’m praying for you” (but how many actually stop to say a prayer?? That’s something I started thinking about when I got sick because I was guilty of that very thing for a long time)
“I hope you get to feeling better” (Well Sally this is a LIFELONG thing...there is no get to feeling better so thanks for rubbing that in my face) and so many more generic replies.
But the ones that actually showed up? That circle was SMALL and actually some of them were super unexpected, just like one of Joes coworkers and old neighbor that came down and mowed our lawn when we were in the hospital.
It’s been the people that I wouldn’t have guessed, the ones I don’t even know that well, not my family or even life long friends.
I have a friend that has inspired me to send people notes, because she has mailed me some encouraging cards the last year and it has had such a large impact and it takes less than 5 minutes to do but so many of us don’t take the time.
In some ways that circle has grown the past year, friendships that I’ve had for years have grown stronger because we’re going through the same lifelong battle, and as much as you don’t want to see someone else going through it too...man it is nice to have someone that really understands.
Because you can’t fully grasp what it’s like until you’re part of the “club” and there are so many, whether it’s Crohn’s, ulcerative colitis, fibromyalgia, lupus, or so many of the other life altering auto immune diseases.
I was also diagnosed with Alpha 1 which is a lung and liver disease. How does that affect me you might ask? Well it doesn’t now.
You can’t smoke or drink but I don’t do those anyways so that’s not a problem. It probably does explain why I have issues breathing in the heat and humidity but otherwise it goes un noticed in the day to day, it’s 10, 20, hopefully maybe not until 30 years down the road that it will affect me when I’ll most likely end up with a lung or liver transplant or at the least be adding another medication to the already growing list.
That ones easy to push to the back burner and not think about for awhile, there’s plenty else to worry about.
The biggest supporters as you can guess are Joe and our parents!
Joe sees the day to day that no one else does, when I might post a selfie on Snapchat or someone sees me out and about and think the classic “well she looks normal” when really he sees how by the end of the day my joints hurt so bad it’s hard to walk (oh you didn’t realize that’s a symptom of Crohn’s?? Well it is, and I’ll end up with arthritis sooner than later thanks to it) or I’m so exhausted it’s hard to get off the couch.
Now I paint a pretty picture for you all every single day, whether it’s Snapchat, instagram, Facebook, or seeing someone out and about. You see what I want you to see and I tell you what you want to hear, 9 times out of 10 when someone ask you how you’re doing they don’t want to hear the truth...they want to hear “oh I’m doing good” or my normal go to “I’m better than I was a year ago” because technically that is true, a year ago I had lost so much blood (among so many other issues like severe malnutrition)I was on the couch for an entire month before I finally gave in and went to the ER.
But anyways to get back on track, there’s only a small few who really want to know how I’m doing when they ask and I’m so so thankful for those ones that I know I can be honest with.
Though the support system is small it is mighty!
Joe is always there for every little thing, he will work a 50 + hour week, usually a side job or two to make ends meet, be in the gym at least 5 + hours a week helping himself and others That’s a whole other topic, people ask how I let Joe fight, well one I knew his love for it when we started dating 11 years ago, and two how can you stop someone from such a large passion?? IT has been so fun getting to be out in the gym and watching them train and be a part of it and the bond that everyone has made)and then he comes in and if I couldn’t clean something he does it, if I’m too tired to cook he does it, takes care of feeding and letting the dogs out, listens to me vent or complain, and so many other things, and even with his own worries and being so busy he does all of that without a single complaint. I’m telling you all, I hit the jackpot with him, all the health issues set aside am so glad I get to go through this life with him.
My parents are always there even when it’s going out of their way or having to take off work for something. Every drs appointment my mom is at ready to take notes or catch something Joe or I missed, always picking me up something in Des Moines or coming out of her way to bring me Jimmy Johns because she knows sometimes my food options are small. My dad has gone out of his way to help us with different things or give me a ride somewhere. Whatever it is they’re always willing to drop everything and help.
Joes mom and my grandma are always willing to help whether it’s watching dogs, letting us borrow a car if we need an extra, or running us around, and so much more.
I have a couple close friends that know when I need to get out of the house or help put a smile on my face when it’s a bad day.
To put it simply. I’m very thankful for that small group and that they take time out of their busy days to make a difference.
So I challenge you, how can you make a difference in someone’s life?? Who is that person you know in your life that you could do something for, no strings attached. Maybe it’s just reaching out to them to catch up, sending them a note in the mail. Or maybe it’s the people in your own home...PUT DOWN THAT CELL PHONE AND PAY ATTENTION TO THE PEOPLE AROUND YOU!!! this one kills me...and I’m not saying I’m perfect, I’m guilty of it too but I make a conscious effort everyday and we all need to. You need to connect with the people in your lives and scrolling through their Facebook is not how to do it.
Anyways, reach out to someone you know whatever way it may be and just let them know you care.
So back to all the health stuff after my little rant...😊.
Like I said, it’s been a roller coaster.
In January I had a reaction to the Remicade (the medicine I was on for Crohn’s) my body built up antibodies to it so that drug will no longer work for me, basically I’m allergic (within less than 24hrs my joints were so swollen and inflamed I was in severe pain and could barely move). So after being put back on prednisone for the millionth time my Dr made a new game plan and started me on stelara in February actually Valentines was my first dose, At least Joe and I got to spend the day together right??😉. The first dose is through an IV And thankfully I didn’t have near the side affects from that than I did each time I had the Remicade infusions (and now we know why!)
I had a Liver biopsy in January (that was fun...😑) to find out why my liver numbers are so elevated (that’s when we found out about the Alpha 1).
I’ve added a few more medications for different Crohn’s symptoms that have helped.
I have been on and off the prednisone but thankfully I’ve been off the last 6 weeks with good results so fingers crossed...I’m done with it! Even though I still have rough days or even weeks, I feel like the Stelara is working and for that I am soo thankful!!
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I never manage to go the 8 weeks like my dr usually says when I leave a visit, something always ends up happening and I have to see him sooner. This time I could tell something wasn’t right and sure enough I got Cdif again, once you get it once when you have Crohn’s you’re much more prone to getting it again, especially with such a low immune system (which has to stay low in order for the Stelara to do its job). So I started antibiotics for it (thank God it was in a pill form this time instead of the nasty liquid I took last summer for it🤢).
About 2 months or so ago now I started having really head, neck and shoulder pain (Well worse than it has been, I’ve been dealing with that for a couple years) It finally got to the point where it was so unbearable about 1:00 in the morning when I hadn’t been able to sleep I got Joe up and we went to the ER. Long story short, now I’m dealing with nerve pain, I’m on a pain medicine that is specific to nerve pain and it has helped a lot, so much in fact I’m wondering if I’ve had nerve pain a lot longer than I thought. I’ve been taking a lot of Tylenol for a long time for unexplained pains and this has covered most of it. I started physical therapy in hopes that we can get some of it worked out so I’m not on yet another medicine forever.
People don’t realize how much stress is a factor in an autoimmune disease…My family knows and for the most part tries to keep me away from it but I’ve been dealing with CVS pharmacy the last week trying to get my dose of Stelara I take - It is getting shipped to my home and Joe will give me the injection. After a few meltdowns and nothing but frustration Friday night a woman from UPS in Creston drove it to my house because yet again CVS dropped the ball, I didn’t realize how much stress I was under from it until I went to bed Friday night completely drained and woke up Saturday the same way because yay…It takes awhile to come back from that…
It’s things like that I’m still learning how to keep under control, but really how does anyone keep stress at bay?? There is soo much of it in all of our lives.
I still deal with daily, being exhausted, nausea and so many other symptoms and honestly those are going to be the rest of my life. Even when you’re in remission Crohn’s is a disease that you’re always going to feel, its always going to be there in some way or another and you never know what will cause it or when a flare up will come, and you just hope it moves on quickly.
Something I’ve really noticed and maybe its the exhaustion or the mediations I’m really not sure, I struggle with forgetting things whether its while I’m having a conversation with someone or forget that I was going to do something, I was already a list maker but boy I write EVERYTHING down now incase I’m not going to remember it in 5 minutes.
So basically…After a year I’m still working on figuring out my “New Normal” I’m no where near I thought I would be after a year but I’m learning that’s ok and its all in Gods timing.
I’ve always said I know everything happens for a reason and I hope something good can come out of this. One thing that has changed over the last year is I’m learning to have so much more compassion for people. Don’t get me wrong, I’m still a call it like it is black and white kind of person (My family can vouch for that) and probably always will be But this has taught me that you never know what someone else is going through…What you see is not the real deal and when I would normally say, that persons weird, annoying, etc. You don’t know what they’ve been through in there life to make them that way. Granted I still struggle some with this one…bit if you’re in the checkout line or at a restaurant and someone is rude, You don’t know what’s going on in there lives to make them act that way so I’ve learned instead of just getting mad or irritated to give them a break (At least for the most part).
So I encourage you to take a step back and have a little compassion for the people around you, I think this goes back to a lot of people not being present in the world around them.
My dad took me to his accupnturist a few weeks ago and it was amazing after 5 minutes of meeting me how much he already knew about me and it wasn’t some psychic type thing, he could read me and my body language and that was pretty eye opening also, He was an older Chinese guy and not that I’m into meditation (Although I probably should be) They’re so much more in tune with what’s around them and it was pretty interesting.
To finish off, If I haven’t been apart of your life or been plugged in, reached out etc. for the last 8+ years I’m sorry, I was kind of busy trying to stay alive…and in someways yeah thats sarcastic and in other ways it is very real.
I was focusing so much of my energy on just trying to get through the day I physically and mentally couldn’t add another thing to my plate.
I usually brush it off when Joe reminds me and don’t like to think about it but Joe and my mom were both worried they were going to lose me last summer because I really was that bad. So when I get frustrated that I’m not where I wanted to be, I’m truly just thankful to be alive and know that God still has a plan for me.
I know I’ve already said this but if you only take one thing from reading this LONG post…(Thanks for getting through if you’ve made it this far) but I seriously encourage you to make an effort…reach out to those around you, spend time with the ones you love (and by spend time I mean get off your phone and connect) Don't make excuses...we all have those. Just be honest and make a change.
I’ve been amazed and saddened as I’ve gotten better and tried to make an effort how many people don’t care to do the same. Part of me wants to be angry and stop trying and the other part is reminded, I don’t know what those people are going through, and I’ll keep trying because maybe eventually it will make a difference in someones life.
Thank you to those who have said a prayer for me over the last year, I so appreciate and will need many more in the time to come.
Thank you to those who have actually been there for us whatever way it may be. You have no idea how much it means to us!
I think this is the most honest post yet, its hard for me to let people see the real me and what’s actually going on but it sure feels good sometimes. it was quite emotional writing it but you know thats just another part of the healing process is to get everything out into words what I’ve been feeling.
XO,
Chloe
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