Happy Sunday ya'll!
This weekend was incredibly relaxing for me which I needed after the chaos of the holidays. I also was starting to get sick so I needed to sleep it off, hydrate, and load up on Vitamin C. It was also so damn cold here in Maryland so I rejoiced that I had a reason to stay curled up in the house.
I spent today prepping for the week and getting myself ready to crush it. I've been slammed at work with a ton of projects so getting set up on Sundays to make my mornings and my week go as smoothly as possible is so key.
Something that I always have struggled with is my morning routine. I love maximizing my sleep time which means I get up at the last minute possible to make it to work on time. I've tried to change this about myself but I just have accepted the fact that mornings aren't my thing. I get so stressed scrambling around trying to get a smoothie together and pack my vitamins, snacks, waters, for the whole day. To be honest I usually grab the quickest thing possible and bolt out the door.
This leaves me with not the greatest breakfast and trying to remember to take all of my supplements when I get home. Smoothies are such a great way to pack in veggies, fruits, and supplements/powders that make up for what you aren't getting throughout the rest of your day so I had to figure out a way to make this work.
After I listened to The Skinny Confidental podcast a couple weeks ago with Dr. Mona Vand, my life CHANGED. It seems so simple but it just made so much sense and how the heck did I not think of this before. Mona said that she preps her smoothies in pre portioned bags for each day so that she doesn't have to scramble in the morning to get ingredients together. THIS MAKES SO MUCH FREAKING SENSE.
So I've started doing this and it is a true game changer.
I wanted to show you guys what I put in my smoothies and how seriously freaking easy it is. I also have been doing this with supplements. If you have Crohn's or any chronic illness you know taking your supplements are crucial to keep your body functioning so forgetting them and not being organized with what you are taking can really screw things up.
So here are the detAILs.
Make it SUPER easy.
I usually break it down by:
Boom. Out the door.
My favorite combination is one handful of spinach, one handful of blueberries, chia seeds, maca powder, and spirulina powder. You can add regular water or coconut water if you are feeling crazy. Sometimes I mix up the consistency by adding some ice.
This is a great way to pack in nutrients at the beginning of your day and start things off the right way while not having to stress out in the kitchen in the AM.
I will do a separate post about what I am doing with my vitamins and what vitamins/ supplements I've been taking but I will just saw this for now, pre packing them for the week is a game changer.
I also have been testing out some supplements that you can just add into your water, stir, and enjoy which is also another lazy girl tip I will be sharing with ya'll once I narrow down my favorites.
All of the lazy girl tips will be coming your way so stay tuned.
While you wait, I'm dying to know what your tips and tricks are AND what are your favorite morning smoothie add ins?
There has been so much to be thankful for lately between our wedding, quality time with friends and family, and the holiday season. During exciting times of the year it is easy to get wrapped up in the fun and end up over exerting yourself so I have been making a serious conscious effort to keep myself and my health in check.
The thing with Crohn's and any chronic illness really is that it never goes away and even if it seems like it does it can always creep back up. My symptoms are something that are aways with me. On holidays, on vacations, on my wedding day, Crohn's is always the extra guest to the party. I know this sounds super depressing and at first it really was. Over time, though, I have learned to make it work and still enjoy things to the fullest in my own special way.
The reason I wanted to write this post at this time of year was because as I mentioned before it is far too easy to over exert yourself and by time Christmas and New Years come you are too sick and exhausted to celebrate. This used to be highly frustrating for me because I used to love to be at pretty much every social event or party I was invited to which was a lot during the holiday season. Now I've had to cut it back and decide what events are most important and I prioritize how I want to spend my "out" time.
You do get used to it! Your family and friends will start to respect your limits and sometimes it can actually be kind of nice to have to spend an evening snuggled up binge watching Christmas movies. I am extremely thankful for the medications and research that have helped get me to a point where my symptoms are manageable and I am thankful for the doctors who have devoted their life to finding better treatments and hopefully a cure.
Antidote asked me to be a part of a video they released featuring fellow chronic illness bloggers sharing the reasons why they are thankful for medical research. I was very excited to share my candid thoughts and be part of a group of such strong individuals who are fighting each day.
Take a look at the video below and remind yourself why YOU are thankful this holiday season.
Recently I had the pleasure of speaking with some members of the Antidote team who shared with me this new and truly helpful way to find research studies and clinical trials that not only are you eligible for but that are a perfect fit for your condition. I, myself, have been in talks with my doctor just a couple of weeks ago about potential involvement in some clinical trials coming up so this seems to have been brought to my attention at an optimal time! Anyone with a chronic illness knows that you do the majority of your own research about your condition and treatments and often are the one presenting the options you find fitting to your healthcare provider. That is why I find Antidote so valuable. This search tool gives you the opportunity to search those options and connect you with the best choices for you. Anything that I can do to make finding treatment options easier, sign me up, because you all know it can be exhausting.
My explanation does not do Antidote justice though so I have included a post from a member of their team, below, so that ya'll can get the full scoop on how Antidote can help you in your battle with Crohn's or any chronic illness for that matter.
A New Way to Find Research Studies for Crohn’s Disease
As anyone living with Crohn’s disease knows, finding the right treatment option can be a challenge. To start, there’s no one test to diagnose Crohn’s disease, so other conditions have to be eliminated as options first before a Crohn’s diagnosis can be considered.
Once you’ve been diagnosed with Crohn’s, there’s no one treatment that works for everyone. The goal of Crohn’s treatment is to reduce the inflammation that causes symptoms. Ideally, treatment also leads to long-term remission.
But for some people, standard treatments just don’t help that much. Researchers are looking into new options to better treat, and ultimately cure, Crohn’s disease.
Some treatments in development aim to block inflammation at the source instead of treating symptoms once inflammation already occurred. Research suggests that newer corticosteroids, for example, may be better at treating Crohn’s symptoms than older ones, with fewer side effects.
One new treatment path researchers are exploring involves a bacteria called Mycobacterium avium paratuberculosis (Map), which may contribute to Crohn’s disease. The bacteria causes intestinal infections in cattle that are similar to Crohn’s disease in humans. Several studies are investigating whether treating people with Crohn’s with an antibiotic for this bacteria makes a difference in symptoms.
Joining a clinical trial can be one way to access potential new treatments as well as quality care. There are currently 234 research studies looking for volunteers living with Crohn’s disease in the United States.
Before new treatments can reach patients, they must make their way through four clinical trial phases. Each phase tests the potential treatment for safety, effectiveness, or both, and volunteers are needed for each one.
Every trial has different requirements for participation, though, and it can be difficult to sift through on ClinicalTrials.gov. Though all clinical trials are lifted there, the website wasn’t designed with patients in mind, so it can be frustrating to try and find what you’re looking for.
Antidote is a health technology company that aims to solve this problem through their simple search tool. You can find clinical trials that may be a good fit for you by following a few steps:
If you’re interested in learning more about new research studies near you, start a search using the tool below.
BYLINE: Nancy Ryerson is a Digital Marketing Manager at Antidote. Prior to joining Antidote, she was on the marketing team at The Michael J. Fox Foundation and worked as as a health journalist.
I have included this tool below so that you can start to search right off of CrohicallyBlonde.com! As always, if you have any questions or comments don't hesitate to reach out.
The more I become involved in the Spoonie community, the more I hear about different illnesses that plague our community and those who are fighting to live with these often debilitating conditions. As I get to the age where I will be considering having children within the next few years, I find myself anxiety ridden over my child having some type of autoimmune disease like I have or another invisible illness that cannot be seen or easily diagnosed. Remembering the pain that I suffered as a child being sick and misdiagnosed makes me vow to never have my child (or children) go through what I went through. This is no knock at my parents. They always had me seen by the best doctors and looked into whatever medical information was available. Back when my parents were struggling to find answers the internet wasn't alive with knowledge like it is now. I am so incredibly thankful that when my children are born, I will have the power to be their own health advocate just like I have to be for myself. The information that is available now is so infinate and continues to grow thanks to all of the new research and those who publish the findings on public sites and forums.
When I saw a presentation by the Diamond Headache Clinic, shedding light on the symptoms and misdiagnosisis of Abdominal Migraines, Migraine Headaches, and Cluster Headaches in children, I knew this was something that I wanted to share with you all in hopes that it could help a child who is suffering and has gone undiagnosed. Symptoms of these invisible illnesses are so easily misinterpreted for other sicknesses such as the flu or a cold or just 'being anxious'. They aren't like a scrape or a broken bone where there is physical evidence of what is causing the pain. Sometimes there is but sometimes there isn't. When I read through this presentation it really struck me that at least as adults we can express and do what we can to ease our pain but children do not have that same freedom. I can choose to work from home one day because my pain is too bad for me to leave my sofa. A child is at the mercy of their gaurdians telling them they must go to school whether they beleive their invisibile symptoms or not. I can choose to take medications that will ease my pain. A child, again, is at the mercy of their gaurdians. They cannot fight to be their own advocate. They don't have the resources. But we do. We as parents, god parents, aunts, uncles, brothers. sisters, or friends have the power to listen and to do the research and help get to the bottom of what is causing pain and harm if a child around us is suffering. Let this serve as a reminder that even if you can't see it, it could still be there.
As a parent or any of those identities previously mentioned, I urge you to take 10 minutes of your day to review the information in this post that way if a child you love is suffering, you may just be the one to help them realize that there is a solution and a way to get treatment. Take a look through the presentation below:
If you know a child who is struggling with any of these symptoms, please do not hesitate to reach out to the Diamond Headache Clinic. We all deserve to have our voices heard and our pain addressed even if someone else has to advocate for us.
As always if you need a friend to reach out to or just need someone to share with and vent about your story to, I am always here. That is what Crohnically Blonde is all about. Last, I want to send a ton of love to parents raising children with invisible illnesses. I can't begin to imagine your undying strength and I am so thankful for all of you for raising children like me.
t has been about a month now since I've posted a true Crohn's/health related update. First off, thanks for sticking with me guys. These past couple months have been total chaos both physically and mentally. I can honestly say they have been some of the happiest with my engagement but also some of the hardest trying to find answers to health issues. Recently I have seen multiple doctors who cannot figure out what the cause of my constant body pain, fatigue, and weakness is. Finally it seems the conclusion is some type of connective tissue disease/disorder either brought on by an autoimmune or even the Remicade. I don't have any distinct diagnosis yet and am waiting on an appointment with a rheumatologist who I pray can help me make sense of all of this.
I know I have said this before but not know what the heck is wrong with you is one of the most frustrating things to go through. The physical piece of it is hard, yes, but the emotional aspect of having an invisible illness or chronic illness can be the most debilitating part of the whole thing. I love sharing my life and my struggles with our community because I like helping other people and connecting with others but recently I have just been retreating and trying to conserve energy.
Something that I always hear from people with chronic/invisible illnesses is that their friends say that "they change" or "they are antisocial". At first I always thought, "oh its just people being depressed about their situation". I did this SO seriously when I was really sick a few years ago. I stopped talking to friends, I spent any free time at home, and I because a lot less of the social butterfly I always used to be. Crohn's has changed my social demeanor a whole lot to be honest.
I have a new take on this now. I think that this natural instinct to retreat when you are sick is something that your body does as a line of defense. It is trying to conserve your energy for what is most important, keeping you alive and thriving. I used to think it was a conscious decision that I didn't stop and talk to everyone I could in the office or the grocery store anymore. I thought it was me lacking the confidence that I used to have that cause me to crave being the center of social attention. Now that could play into it but I really think that my body is conserving my energy for myself because I am sick.
I have started to think about this as I go through my day now and it really has helped me to change my perspective and keep me from feeling as guilty. I have a limited amount of energy per day and I need it to be allocated in the way that best suits myself and my health. Now I don't literally mean energy like physical energy. I mean that energy, plus mental energy from problem solving, stress, and just general thoughts. I mean emotional energy that you put into relationships and conversations no matter how trivial they may seem. There is only so much that I can give and if I give my already limited amount away to everyone else, How am I going to feel? The answer is not good.
I've shifted my mindset and realized that sometimes it is so necessary to pull your focus inwards for a bit because you can't spread light and love to others if you, yourself, are not up to par. I have taken these past few months to rebalance, rejuvenate, and realign. Although my physical health is still not where I want it to be, my mindset is great and that is the real compass for what is to come. I know so many of you understand this struggle and for those of you who don't I hope you never have to.
I can't wait for ya'll to see what is to come and I am so excited to continue to grow this community even more. Thank you for the support that this group always gives to me and I look forward to continuing to share my stories with you all.
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!
CROHNICALLY BLONDE: THE PODCAST EP. 3- LADY DI TAKES THE MIC TO TALK CROHN'S, FINDING INNER PEACE, & BEING MY MOM (AND ALL TIME BFF)
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.
Blonde babe. Maryland native. Crohn's crushing puppy mother to two sweet rescues.