In the podcast this week my mom and I opened up about our ongoing struggles with eating disorders and recovery. We thought it was fitting because it is National Eating Disorder Awareness Week. First off, if you haven't listened to this week's episode, stop and go listen ASAP (HERE!).
In the podcast we didn't go too far into our backstories but focused more on a real time update and the continued struggles we've experienced. After the podcast went live I had quite a few people who were curious about how we got to this point and our experience when we were in the darkest parts of our experience.
So I figured why not create a post answering those questions....You can hear/read about my entire story in this post and on The F- Word podcast (episode 15). I also dive into some coping tools and a recovery focused book that I love in this post.
My mom has just recently become a huge part of Crohnically Blonde so has not yet had the chance to share her full story. Diane shared a bit about her past struggles with anorexia and how her struggles and then recovery evolved through having children and then combating Crohn's.
I hope ya'll enjoy what she has to share and I am so excited for her to continue to share her experiences and wisdom with us!
I began my issues with Anorexia in early high school, didn’t seem to have issues in college, resumed my issues after college and seemingly moved beyond my issues a few years after my second daughter was born. While in high school, Anorexia was recognized, but not discussed much and according to what I knew, not many people knew how to deal with it. My best friend was concerned and talked to my parents. I vaguely remember my parents addressing it with me and my dad trying to convince me to eat ice cream.
After college when I got married, I resumed my anorexia. I don’t remember during any of this time anyone ever telling me that I was fat or too big. It was all me. Why? Was there a gene involved? Was it a product of my apparently not so happy childhood? Was it society? Yes. No. I don’t know. I just knew that I had to carefully watch what I ate, make sure I exercised a lot and never got above a certain weight that I had determined was my healthy weight according to my perception of how I looked. And this was a full time job as I thought about it constantly. There were a couple of times that I allowed myself to gain some weight. When I was trying to get pregnant. Because at the lower weight, I didn’t have my period. During this time of trying to get pregnant, being pregnant and after the births during breast feeding, I was still very obsessed about what I ate and how much I exercised. Actually, I weighed my least amount ever when my second daughter was one.
What happened next? I don’t know exactly, but about two years later I sought help for what was diagnosed as Obsessive Compulsive Disorder. Besides medication, I saw a counselor that helped me through some issues that I didn’t realize I had. I am very good at shutting off parts of my life. Then I didn’t seem to have Anorexia any more.
Really? Okay maybe not Anorexia, but I still had body image issues which I didn’t fully acknowledge for many more years. I raised my girls knowing I had had an eating disorder so was very careful not to let my vocabulary and behavior show this or affect them. I thought I did a good job with that. Well, no I didn’t.
Today, I still have body image issues and now I have Crohns.
This is where in my story Michelle and I pick up to discuss the issues-do you mentally ever get past an eating disorder? How does it evolve as you get older? What about other health issues on top of it? What about social media?"
In honor of Eating Disorder Awareness Week, Diane and I decided to take the plunge and share our truths about ED recovery this week on the podcast.
I started my journey through treatment and towards recovery 8 years ago now and have learned that it is a just that... a journey. There is no magic switch that makes an eating disorder go away, not to mention the havoc that my Crohn's has wreaked on my body image.
It took me a long time to want to share my story so publicly, especially on my own platform, which I know seems weird coming from someone who talks about bowel movements and vomiting like it is my day job. For some reason (which we dive into in the podcast) talking about a mental illness was more difficult for me to address than talking about my physical one.
The topic of ED's and even more the topic of recovery are so near and dear to Diane and I. We've both suffered, fought, been knocked down, gotten back up again, and that is why we share our stories, as uncomfortable as it may be. You're not alone.
Whether you have an ED, have had an ED, know someone who has an ED, or just ever experienced negative self talk and put yourself down because of something related to your body, please give this a listen.
Listen to our stories, feel free to share with us yours, and lets continue to fight this stigma and utilize this community to continue healing.
Stay tuned this week because there are some more blog posts coming about ED related issues, recovery, and a whole lot of realness.
I have been down and out for the past few days because I have come down with the, much dreaded, flu. I got my flu shot early this year but being immunosuppressed and all those vaccinations don't always do the trick. I've been laying in bed for, I kid you not, the last four days. I've been feeling absolutely miserable for one, but on top of that, I'm getting very stir crazy. This has been the first few hours that I have been up to even looking at a computer screen (besides from answering critical emails because I can never totally unplug....) and of course I needed to get a new post out to bring me back in touch with the living world that is not on Netflix, Hulu, or On Demand.
I figured what more relevant that to share with y'all some at home (and most of them natural) remedies that have helped me deal with the flu this season. These can really be applied to any time you are feeling under the weather which I know is unfortunately all to common with some readers. Especially with the flu being so bad this season and so many of us being immunosuppressed (or even if you're not), I highly recommend you stock up on these supplies just in case. Anyway, you know the logic of the world, if you are prepared for something then it won't happen right? FULL DISCLOSURE ** THIS DID NOT REPLACE REGULAR MEDICINE - I like to handle things naturally when I can but messing with the flu and a subpar immune system is not cool. Tamiflu was needed. These tips are meant to supplement not replace what your doctor recommends. And in case you need reminding I am not a medical professional so always run these things by your doctor before trying.
Here we go!
First up on my list is....
I use Young Living (I'm not a rep and I don't get anything if you purchase these oils so rest assured) but I just started with these and got hooked. I mix 4 drops of Thieves, 7 drop of Eucalyptus, and 9 drops of Lavender in my diffuser and keep it going 24/7 in my bedroom while I'm sick. These past few days specifically but overall this whole season I have been seriously struggling with my sinuses and this has been one of the only things that truly has helped.
The lavender is calming and helps to relax me (and to be honest when I'm sick anything that can help me doze off is much appreciated). The thieves is known to help with respiratory health and can help to lower fevers. The eucalyptus is my personal favorite touch in this combo because it is extremely refreshing and helps the make your sinuses feel clearer. Like I said, I've kept these going most of the day and I feel like they have really helped.
I have usual combos that I like to use for bedtime put I'm going to do a whole separate post about all of the other oils I've been experimenting with.
For the past month or so I've been all about CBD oil. I've been taking it to help with anxiety, help with insomnia, and help reduce my muscle and joint pain (especially around Remicade infusions). Another whole post is coming about this too so I'm telling you for now to just trust me because you can get so many more benefits out of this stuff besides just when you are sick.
While I've been under the weather I've been using it to help with my body aches mainly. I take two droplets twice a day and it has made a night and day difference. It doesn't get you high or anything which is the most common question I have gotten but it does give and overall calming effect and help to reduce anxiety. Anxiety is already something I struggle with so it is not helpful in anyway when I am cooped up at home especially feeling sick. Thank you CBD!
You can really get any kind of these but the ones I usually like are these, just $5 generic Target brand. Usually I don't take melatonin to sleep because it actually works too well and I will be out for way longer than the time I have to sleep on a regular night. When I'm sick though, it is a different story. This time around my head hurt so bad I couldn't even watch TV or read so what else was there to do? Sleeping through the worst of it was the answer. I took two gummies and within 20 minutes I was feeling ready to snooze despite the headaches and sinus pain that was keeping me up before.
For me personally I can't recommend these as a nightly thing (I much prefer the aforementioned CBD oil) but when you have 12 hours to sleep then I give it two thumbs up.
I feel like the only time most people have drank Pedialyte is when they were toddlers or when they had some seriously hungover Sunday mornings in college. Thanks to Crohn's Pedialyte has been a must have in my household for the past many years of adulthood. I never think to drink it unless I am having a GI related situation going on but my husband insisted I was going to get dehydrated even though I don't have the stomach flu. I seriously doubted him because I was religiously sipping my water next to my bed. I hate to admit it but of course he was right. Through sweating and sleeping so much it slowed my usual water intake no matter who conscientious I was, I definitely got very dehydrated. I took swigs of Pedialyte when I could and this helped decrease my headaches as well and help me feel a bit more energetic.
You can pick up Pedialyte at pretty much and drugstore or of course, you can use it as an excuse to go to Target.
Hopefully everyone is staying well and ya'll had a way better weekend than I did! I love sharing fun tips with you but I also like to keep it real with the not so fun stuff, ie. being sick with the flu. I can only hope that even if you are not sick, you stock up your home with these essentials because they make your recovery a whole lot smoother.
Also, huge thanks to everyone who reached out via social media to wish me a quick recovery and provide me with a plethora of Netflix suggestions.
I will leave you with this as a little reminder that even if you aren't chronically ill or sick right now, we all need to recharge sometimes.
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!
Blonde babe. Maryland native. Crohn's crushing puppy mother to two sweet rescues.