I have this whole motto where my blog is about kicking chronic illness's ass. Usually I think I am pretty good at it. But recently, I have been getting my ass kicked. I hate admitting that because that's not who I am. I am not someone who spends a long weekend unproductively on the couch. I am not someone who lets physical defeat get me down mentally. But you know what, I am realizing that maybe that has to be a part of who I am now. I exhaust so much mental energy being upset that I am "not productive" or "I'm shitty because I didn't make it to the gym". I am so damn hard on myself. But it is against my nature not to be.
I also get frustrated REALLY easily when things are not in my control or I can't solve a problem. A blessing and a curse I supposed. Recently, a lot has been out of my control. My symptoms have escalated and I am having more bad days than good. The thing is, it isn't my gastro effects of Crohn's that are crippling me from living a normal life. It is the fatigue, joint aches, muscle pain and all of this is just getting worse. I am so thankful that my Remicade has definitely helped my gastrointestinal issues but I can't help but wondering, what else is going on? There has to be something else. There is no physically possible way that a 26 year old should feel this way.
I have went through the motions, gotten blood work done, MRIs, CT scans, sonograms. Somehow I am a perfect specimen of a human on paper now. But my body is telling me otherwise. I thought, maybe I just need to go to the gym more and be more active and my joint pain will go away. Wrong. I made it 30 minutes into a gentle yoga class before my wrists were swollen my knees were aching and my one knee actually gave out when walking down the stairs when I got home. THIS IS RIDICULOUS. Coming from someone who used to frequent 90 minute intense hot yoga classes, frequented other classes at my local gym, and have a serious collection of Piyo programs that I loved to do at home, this was a wake up call. Even during periods of time where I wasn't working out as frequently I could drop in for a HIIT class and hold my own, and now I can't even make it through a damn gentle flow yoga class?!
I scoured through my blood work to see if there were any signs of something that maybe my doctor was missing when she told me everything was "fine". I also in a fit of range sent her a probably not so nice message explaining that "fine" is not what I would use to describe my situation right now. I am not blind to the fact that with one autoimmune often comes others. Many doctors have speculated there is something else that is going on behind the scenes but they have never been able to pinpoint it. I have a recommendation to go see a Rheumatologist which I supposed I should but somehow I feel like its just another dead end. I have been frantically researching my symptoms (I'm long past being concerned about when WebMD says I'm on the brink of death), and have found some theories that I will share as I go through this journey of, hopefully, diagnosing what else is going on. I am not only going to see the recommended Rheumatologist but also a specific Lyme literate doctor as well so I can make sure I am covering all bases.
I have some theories of my own which I don't want to share until I am sure, but let this serve as another example of why taking control of your own health and doing your own research is so crucial. You have to be your own advocate.
I will make sure to keep you guys along on this journey with me and as always I appreciate anything that you guys have to say as far as questions or comments. If you have been in this similar situations and have stories of your diagnosis I would LOVE to hear those stories and pieces of advice as well.
I do also have to close this post out with addressing the mental impact that this whole thing can have. It can literally make you feel crazy because on paper you seem fine but you aren't! People start to act like it is all in your head. But it isn't. I know that, other Spoonies know that, and what has helped me so much in staying sane through this is leaning on the online support community and hearing about other people's similar situations. Us chronic illness fighters have to stick together and support each other, which comes back to the reason why I started Crohnically Blonde in the first place.
Things have been crazy this past week! And I can't wait to tell you all about it.....
So first off, it was the week before my Remicade infusion so I was not feeling so hot. On Monday we were scheduled to FINALLY get our AC replaced in our house after three excruciating weeks of waiting. I came home from work a bit early to meet the repair technician and was greeted by two completely destroyed TV remotes all over our bed.
My two little troublemakers ATE, literally ATE TWO REMOTES. This was so ridiculous because we've been leaving them out of the crate for almost a month now with no issues. Luckily, they didn't eat the batteries so it wasn't as bad as I had originally thought but I did end up spending six hours between the regular vet and the vet ER with Rhaegar who was the main culprit. After a pretty penny spent on getting him back to normal, I am happy to say him and Charleston are okay and healthy but they did lose their privilege of roaming free while we are at work.
Other good news, we did finally get our AC replaced thanks to my dad and stepmom coming through and helping out with that while I was at the vet all afternoon. We have a cool new Nest thermostat and a completely new AC system that should last us for a long, long time (or at least it better).
Needless to say, we were pretty exhausted by time Fourth of July rolled around so we kept things low key and had family dinner at my parent's house which was relaxing and a great opportunity to catch up with them.
Other than that I have been keeping things superrrrrr chill this week in preparation for my Remicade appointment yesterday. I wanted to give you all an update on that as well. This was my fourth treatment and I was hoping to get some more answers after my inconclusive hospital visit a few weeks ago. Unfortunately, there isn't much that can be done differently. I am off of the steroids because they cause some major sleeping issues for me and I started two new antacids which I haven't tried before so hopefully I will see a difference with those. My doctor also moved up my Remicade to be only 7 weeks apart instead of 8 weeks which will hopefully help me avoid that hardcore crash during that last week. Have any of you guys seen luck with changing the schedule around a bit?
Overall, I think the Remicade has been a lot better for me and more effective than the Cimzia but I still am not back to my best self. I think with Remicade the times that I feel well I feel a lot better than usual but the times when I don't feel well are the lowest of lows. Sometimes I don't know what is better: to feel really high and really low or to just feel low grade shitty all the time? Only time will tell if this is going to be the long term solution to my case of Crohn's.
I also am supposed to go BACK onto the Keto diet which I was originally on and then off because of the liquid diet/hospital situation and now I guess it is back on. I am definitely going to have to get things back in check over these next two weeks before I leave for vacation because the last thing I want to do is spend my entire time in Disney being sick.
I've been doing a ton of research about the different restaurants that Matt and I have booked for our trip and lucky for me, Disney is incredibly accommodating of dietary restrictions. I've seen some blogs about the different options that they offer as well, which has been super helpful. I am going to try and document what I am eating while I am there and share the different options that are offered in hopes of helping other people who have dietary restrictions and are trying to enjoy Disney World as well.
I seem to get a lot of positive feedback on my travel posts so I will make sure to document everything that I am doing with packing, eating, preparing, researching, all of that good stuff. So be on the lookout for that!
I will be spending the rest of this weekend while I am feeling under the weather from my Remicade, creating some new content and responding to any emails that I have gotten from you guys! There are some pretty exciting things that I have in the works and some collaborations that I can't wait to share with you all. Just stay tuned! Now that I should be feeling better in a few days we are back in business.
Something that I don't think I've ever addressed is what the weekend after Remicade actually looks like. I think people assume it is a lot of stomach issues that make someone sick after getting the infusion. It makes sense to think that because that is usually the case but this version of feeling under the weather is a totally different breed. Your joints ache, it is impossible to get comfortable, and it feels like you are running a fever constantly. I feel like I can never drink enough water to feel not dehydrated and I develop a cause of perpetual sore throat. Usually the first night I fall asleep decently early but wake up in the middle of the night with aches and pains that I can't get rid of. By time I get back to sleep it is usually on and off with some really strange dreams which aren't a proven side effect but I SWEAR I dream the weirdest shit after Remicade days. I end up sleeping (or at least laying in bed) until at least noon which sounds like it would be nice but not when you are insanely uncomfortable. After being up for 3-4 hours just sitting on my sofa I start to crash again and have to retreat to bed or curl up with a blanket and Netflix. I usually like to read when I don't feel well but my eyes literally ache for a few days after Remicade so I can only read in small segments of time. I am irritable and cranky and my skin literally hurts to touch. Getting Remicade is basically like having the flu and not being able to do anything about it.
I know to someone who has never experienced this it could potentially sound over dramatic. Well it isn't. It is 100% truth right here.
I personally try and make the best of it by making Remicade weekends special for Matt and I where we rent movies, play board games, and spend hours snuggling with the dogs. It is an excuse to do nothing all weekend which isn't horrible. For the hours when I feel like a functioning human I can be very productive with blog stuff because no one is messing with me!
As always, I am don't share all of this to have people feel bad for what is happening in my treatment, it could be SO much worse, so feel bad for someone who has it a lot worse. I am honest so that if you are going down the path of Remicade you know what to expect. I am honest so that if you are the mom, dad, boyfriend, girlfriend, brother, sister, best friend, coworker, boss, or in anyway in relation to someone who is going through Remicade, you know what that person is going through and maybe you go a little easier on them during the weeks leading up to and following their treatment. So share, share, share this and hopefully the compassion will grow.
I hope you are having a safe and relaxing weekend and I will have another post up for you guys ASAP!
7/2/2017 0 Comments
I am so excited for this week's podcast and so incredibly proud of how it turned out. Not having anything to do with me, but everything to do with my amazing guest. My mom! I wanted her to be my first guest because not only is she my biggest supporter but also is a fellow Crohn's sufferer and has really great insight from her own journeys with health and wellness both physically and mentally. I am excited to share Diane's wisdom with the CB community and I hope you all find her story as valuable as I do!
If you have any questions for Diane after listening to the podcast feel free to shoot an email over to firstname.lastname@example.org and I will pass it along to her. Also, if there is anything else or other topics that you want me to cover with her next time she is on the podcast, let me know! I am going to do a follow up post with some of her recommendations of things she is loving right now so expect that to be coming out in the next week or so!
Thanks for listening!
Usually I don't do back to back posts of the same series but I couldn't wait to share my May Must Haves delivery from Spoonie Essentials Box. I get so genuinely excited when I receive my SEB package because the boxes are always filled with things that are so needed. It honestly makes you feel like someone just knew what you have been needing, boxed it up in adorable packaging, and got it hand delivered to your door. I know I am a little late on sharing this but you know how life likes to get in the way.
Check out my review and sign up for your own box here!
Yup, we're going there today. Major truth bombs right here so if you aren't in the mood to get deep then you should keep on scrolling and come back when your are feeling like getting really freaking real.
Recently I have been feeling like I got hit by a bus. Regina George style, over and over again both physically and mentally. I have been really struggling to balance everything going on in my life. I know that sounds like I am being over dramatic because I am dealing with normal 25 year old stuff like a mortgage, friendships, money, work. But as someone who is prone to some serious anxiety and is a major control freak, the unexpected things in life are oh so rough for me. A hospital visit here, a random and unfortunately steep medical bill there, a random day where on top of a bad day at work I am plagued with body aches all day. I'm not here to complain. I'm here to put all of this out there because if you are suffering from a chronic illness chances are you feel this way too. And if you are a supporter of someone with a chronic illness then now you know how we feel everyday.
I usually can keep pretty even keel but when shit hits the fan for me I lash out at those closest to me (aka Matt) and I get just plain evil. I try so hard to be a a kick ass #girlboss at work putting in 50+ hours of time in per week, coming home and being a good girlfriend and dog mom, keeping my house clean, having a side hustle (shoutout to this blog), and trying to maintain a somewhat normal state of health (doctors appointments, sleep, food prep, research). I feel like I just can't win at all of these things 100%. I know it is because I always hold myself to unbelievable standards but I REALLY, like REAAAALLLY need to stop doing that.
I think a big portion of feeling so defeated is that the light at the end of the tunnel can sometimes seem so far away. On good days or weeks I feel upbeat and hopeful and then on bad days I feel like remission is just this imaginary thing that doctor's tell me about to keep me satisfied and trying more and more medicines until hopefully I find the magic combination. I feel bad whenever I think like that because I know people have it A LOT worse than I do. But like I said, this stuff needs to be talked about because honestly, I haven't seen anyone really put it out there like this.
The other day I reached a real breaking point for me that I haven't experienced since my first diagnosis. Things just piled on and all of a sudden everything went wrong at once. Our AC broke in our new house, work things were getting crazy, and on top of the my health took a weird turn. I got very sick two Fridays ago and ended up in the ER. I didn't know what was wrong but I did know it was way worse than usual so I needed to figure out why there was a sudden change. After hours of excruciating pain, dizziness, dehydration, and lots of pain medicine, blood work, and tests the conclusion was so irritating to me.
My lymph nodes in my intestines were swollen.
Are you kidding?
That is what caused me to feel like my insides were literally going to fall out?!
I went from the doctor telling me that I may have to have emergency surgery to telling me that my freaking lymph nodes were swollen?! My prescribed regime for when I returned home was more steroids, pain meds, and Pepto.
I'm in no way frustrated with the doctors. They did everything in their power to figure out what was wrong and they did. And it isn't there fault that there is nothing more helpful that can be done. Autoimmune diseases are a painful game of guess and check where sometimes things work and sometimes they don't.
I have been in this type of experience before but this situation was so defeating because:
1, I had been very strictly following my anti inflammatory diet and actually feeling better until the night before my ER trip. Things with Crohn's can change so suddenly. One minute things are okay and one minute they aren't. There is no planning with Crohn's.
2. I actually feel crazy whenever the doctor tells me its "just" this or "just" that, that is the problem. Like am I crazy for feeling the sickness, pain, and discomfort that I am? When I am feeling THAT bad I would expect them to find something gravely wrong with me. Instead it is "just" my lymph nodes causing all of this and my regular Crohn's flare up inflammation that can't be tamed. There is no measure on pain. They can only take my word for it. When they do tests and blood work and see it is "only" my inflammation, I feel like my pain isn't justified. Because of this I so often hide how I am feeling physically because its not like a broken leg where you can see something is wrong. That is why it is called an invisible illness with a serious limit of metrics to validate your condition.
I talked through this a lot with my mom who as a fellow Crohn's sufferer and totally gets it. I also worked through it with Matt who is a freaking angel for putting up with me. I slept for almost the whole weekend when I got home from the hospital and then was still foggy through the beginning of the week. Come the weekend I made the mistake of over committing socially (which was so incredibly fun) but now I am paying for it.
I am realizing my limits and I hate having limits. I know now that I can have only one weekend event and that is enough. I know that I need a sleepy Sunday to recoup for the week ahead. I know that as much as I love my friends, my health needs to take priority.
Right now I am still waiting for my Remicade to hopefully start working better. I get my next injection next Friday. For now I am coping with stomach/intestinal pain, foggy brain, and body aches. I switched up my diet again to see what happens and I am on a cocktail of a few medications all with different side effects that cause another issue in my body.
I didn't write this post to be super depressing or to have people feel bad for me. I have a great, beautiful, amazing life. I am not as sick as I could be. I have a job that understands that I need to take time for my health and even more importantly I have a support system that is always there for me and lifting me up. I have a house, I have money to pay my medical bills, and I have the access to great healthcare. I am writing this to shed light on the fact that when you look at me, I seem like a happy, successful, ambitious 25 year old girl. Most people who I meet will never know how I feel everyday because I don't share that with them. I worry about the judgement from other people for me not being able to be 100% at everything in my life. Mostly because they can't see that I am struggling so what must they think? That I am lazy? That I just don't care? That I am a slacker? That can't be any further from the truth. I am all about hustle but I am also struggling. Just recently I realized the true mind fuck that invisible illnesses are and I think that the term is thrown around so much but never actually, explicitly explained.
I hope you read this and can say "wow, yup I've been there, I feel you girl" or you pass it on to someone who hasn't been in mine (or your) shoes and they realize the struggle is most definitely real even though it can't be seen.
I always get so nervous before publishing posts like these because they aren't perfectly curated. Talking about this stuff isn't sexy or cool for Instagram but I keep coming back to my purpose. My purpose of this blog and they purpose of my going through my journey with Crohn's. If at least one person reads my story and can related or connect or feel validated in their journey and struggle then I did my job and served my purpose.
Episode 2 is here!
Better late than never. Technical difficulties pushed me back a bit but I recorded this last Sunday night, in hopes that it would be out a bit earlier in the week. I am glad I finally figured everything out and I hope you all enjoy Episode 2!
I talk about letting yourself have down time, my experience on "The F-Word Podcast", the keto diet, and Ally Hilfiger's book about her experience with Lyme.
I am working on getting some guests locked down for future episodes AND I have some cool suggestions from people that I am excited to incorporate.
GUYS! Super exciting news. I know I just took the plunge and finally decide my own podcast but I also had the amazing opportunity to be a guest on one of my new favorite podcasts, "The F-Word Podcast". I am absolutely in love with their message and everything they stand for. I really can't do it justice with my explanation so I took the words straight from their website.
"We are Jackie and Emily--two friends who decided to start a podcast to openly discuss issues that are sometimes seen as a taboo in order to create a more understanding and empathetic world.
Luckily I had the chance to use their platform to share my story about overcoming anorexia and how that fight plays into my battle with Crohn's. I have never really shared my full story struggling with anorexia on any public forum and I really wasn't sure why (I did share a bit here). I just don't think I was ready to fully embrace it until now. Well, I ripped the bandaid off and here I am. Even more vulnerable and open and authentic than ever and I did it because I have seen the power sharing your story can have on others.
Please take a listen if you are curious about hearing my story and take a listen to the other episodes as well the hear stories from other amazing people who have struggled through a variety of different issues and who are brave enough to share their stories. Every episode is a wealth of knowledge and inspiration.
You can check out the podcast on their website HERE or on iTunes HERE.
Looking forward to hearing your thoughts and feedback!
Blonde babe. Maryland native. Crohn's crushing puppy mother to two sweet rescues.