Vacation and Coming Home

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[Image shows three spoons laying on a laptop keyboard. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the paper is the clipart of a cruise ship and words in black text that read  “Vacation and Coming Home”. On the bottom of the banner is the URL for theecrohniegrace blog.]

Last Sunday, my dad, his fiancé, and my brother and I drove from West Virginia to Charleston, South Carolina to stay overnight before boarding a cruise that would last a week and go to Nassau and Free Port in the Bahamas.

We got to Charleston late that night after 8 hours in the car, taking stops as necessary for food and bathroom breaks. We went to a little Italian restaurant, I gave dad his father’s day presents which consisted of a Star Wars shirt that said “I Am Your Father”  and some homemade black raspberry jam from the festival I had attended the day before we left. We went to bed early, since we had to be up early.

The next morning we put our luggage into a car drove by one of the workers with the Carnival cruise and headed to the Port. It wasn’t a very long car drive, but it felt like it. I was pretty anxious about customs and dealing with security with my medical equipment. And rightfully so.

My first meltdown of the trip would take place during the security walkthrough. I was attached to my feeding pump at the time, so I cleared out my pump backpack of the few makeup items I carried in it and showed the lady. She nodded and threw my backpack down a conveyer belt… while it was attached to me. Naturally, I panicked worried about my tube. I started crying, my dad explained to the woman that I was attached to it, and that it would leak if unhooked.

While already extremely overwhelmed by the people, the noise, and the security lady almost ripping my tube out, they sent me to get patted down by security. I do not like being touched. Not at all. Especially not when I’m already in meltdown mode, so this only set me off more. I was completely embarrassed and felt like a fool but I couldn’t stop crying the entire time, and for a good while afterwards. What my family didn’t understand is that after a meltdown I shut down, I do not talk, I can’t tell them what is bothering me, I can’t process my feelings, I can’t answer questions, and the smallest things will send me right back into the fit of tears. I stuck to counting to four in my head, repeatedly. It was the only thing keeping me from not being a threat to myself in that moment, since my meltdowns often lead to self harm tendencies of hitting myself, a need to get rid of something that builds up inside of me. Like when you fill a cup of water too full and it starts overflowing, the overflowing is the self harm or the need to flap my arms or just do something to get rid of the excess feelings that I can’t identify.

Once we got on the boat, I was able to settle down in my room with my brother. There was still soooo much to take in. There were so many times I felt like crying on the boat, and not because I was unhappy, I was very happy, just because it was SO much! I can’t find better words to sum up it. The boat had close to 2,600 people on it, 12 floors, and a ton of noises and lights and if you asked me how I felt, I honestly couldn’t tell you in words. It was overwhelming, but not necessarily in a bad way.

The first day at sea I went to a seminar on knee and back pain in what they called the China Town Lounge. I was the only one who showed up. I met an acupuncturist doctor from China named Xin Zhong. He and I sat and chatted for a good hour, first him asking about my health and he did a few needles in my knee to show me how acupuncture worked. Then we talked about China, about his time in LA, his job on the boat, about Chinese medicine and how they use things like people’s pulse and how their tongue looks to determine what was wrong with people, and that in China every hospital had acupuncture. He asked me about college and what I wanted to be, and told me I should set up a consult with him on the ship to try acupuncture to see if it would help me with my pain and digestion.

That day I also won Game of Thrones Trivia. I was the only person who knew that the TV show came from the book series A Song of Ice and Fire by George RR Martin. I won a little ship trophy for my knowledge and became friends with another one of the cruise workers, a man from Canada named Francis.

The rest of the day was a bit of a blur, I started getting motion sickness and took some medicine to help with it but it made me a little drowsy. The morning sickness was gone by morning though, which was good because it was the day we would be on the island of Nassau. We checked off of the large boat and then got on a small boat. This boat took us to a beach area where you could swim in crystal clear waters and snorkel off the reefs.

[Image on the left shows me sitting on my knees leaned back in crystal clear waters. Wearing black swim shorts and a dark blue and light blue striped top. I have my glasses on. The Image on the right shows the dock with beautiful blue waters and a group of seagulls on the dock.]

At first I just swam in the waters, excited at the feeling of being weightless and being able to see straight to the bottom at all times. We did that for a good while before my brother and dad decided they wanted to go snorkeling. They rented equipment, but I couldn’t use their goggles because of my feeding tube which meant the goggles wouldn’t seal to my face properly. So I instead found a gift store that sold just the eye piece goggles. I got those and followed the boys excitedly out to the reef.

The reef was very rocky and slippery and I slipped a couple of times and fell before reaching the drop off. But immediately upon going under it was beautiful, I was overwhelmed with just how cool it was. There were tons of fish, brightly colored and dull, large and small, coral, urchins and more. My dad had his go pro and was following fish with it. My brother had an underwater camera and was taking photos. I was just enjoying the view and praying I would remember every single detail of it and of the moment.

We swam around for almost an hour. I found a rock I could rest on and catch my breath. My dad was heading back to the beach and my brother was chasing fish trying to catch them. I just sat there and took it all in. Again, there was so much going on all the time, I found myself often just sitting mesmerized at everything around me, trying to process it and the feelings I was feeling. For some reason I wanted to cry, I wasn’t sad. Just excited, happy, amazed, awed. There were a lot of feelings, I couldn’t make them all out at the time.

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[Image of my brother, my father, and I at Nassau by one of the inflatable water playgrounds they had set up at the beach. My brother is making a peace sign and leaning against the dock’s rails, my dad and I are pointing at my brother and smiling.]

We finally got back on the smaller boat after I took photos of stingrays and dolphins and got back on the cruise ship so that we could go to the second island stop the next day.

There were tons to do on the cruise ship, I already can’t remember everything, which was my biggest fear on the cruise was that so much was going on that I wouldn’t remember the things going on. I remember details of things but when I try to think of it all, it’s like a blur of images in my head that I can’t really find the words for. I wish I could explain it better to people, but it’s something that just is hard to explain or understand.

The second day we went kayaking in the mangroves of Free Port.My dad did most of the paddling while I manned the cameras. The water again were so clear you could see straight to the bottom. We saw parrot fish, silver jacks, tons of little yellow and black striped fish, needle fish, and so much more. We also saw some birds. After kayaking we went down to the beach where we saw a family of Raccoons. We got to go out in the ocean again there where we saw more fish that just swam in between us right out there.

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[My brother and I standing in front of a sign that is mint green, pale yellow, and white. In dark blue letters the sign reads “Welcome to Freeport Harbour Grand Bahama Island”.]

Once we got back into town we stopped at this little gift store which was the cause of my second meltdown of the trip. The gift shop was extremely loud, not only from the people but also the music, I was exhausted from canoeing and there was so much going on. My brother took off to find something to take home to my grandma, I had only brought a little money with me and was anxious because the prices were not cheap, I too wanted to bring something home for my mom and my boyfriend, and also was looking for a shirt or something for myself to remember all of this by, because like I said, my memory is not the best, even now I can’t remember it all.

It all got to me, and even in Therapy today I couldn’t figure out what caused it. I just felt the need to get out of there so I left the shop in a fit of tears and sat on the concrete by a puddle. I wasn’t upset or sad, but I also couldn’t find the words to tell my dad or Sara that. So I just became an embarrassing puddle of tears. All I could think was, I will never be back at this place, and one day I will forget it, and I hadn’t taken my camera with me that day so I didn’t take any photos, I had videos of the things we saw but I hadn’t gotten photos of dad, or Sara or my brother. I felt extremely overwhelmed by it all. And my dad kept asking me what I wanted to do. I couldn’t make up my mind. I didn’t want to leave but I didn’t want to stay. I felt the need to disappear, to just be as small as possible so nobody would have to see me in the fit of tears I was in. Nobody understood what was going on, and it’s not like I could explain to them that I was going through a sensory overload, not that I’m sure they would understand even then.

Eventually we left. It took hours for me to stop crying, I still have NO IDEA what I was feeling or why. I’ve replayed it a hundred times over in my head, it doesn’t make sense. Even in therapy today, trying to talk about it, I was reduced to the same embarrassing puddle and I don’t think my therapist even had a good answer. It’s just how my brain is wired, she tells me. Which doesn’t make me feel any better.

I learned that saltwater is not very good on adhesives after having to change my ostomy after each time in the ocean, and my face tape coming loose and causing my feeding tube to get pulled.

The last day I went and had acupuncture done. It was a really cool experience. First he (Xin Zhong) massaged my upper back and tried to find the areas where “energy flow was blocked” he said which is what caused illnesses and pain. After that he started with my upper back, first with 16 needles from my neck to my shoulders and shoulder blade. I couldn’t feel the needles, just a warm sensation that they caused, which he said was because my muscles were extremely tight and tense, he assumed from being in pain all the time it had caused my muscles to tense up.

He left those in for about 20 minutes while we  talked more about his childhood, how he loved dogs but when he had a dog as a child his mom made him get rid of it. He wanted to get another when he got home. He also wanted to travel China and see the Great Wall, Hong Kong, and the Terra-cotta Warriors. How he thought it was ironic that the name of his town when translated into english roughly meant always springtime, even though the only seasons they really had were summer and a long winter.

After that he did my lower back and hips, about 20 to 24 needles then. One of them caused an odd feeling like a lot of pressure which he said was because of all the blocked energy and muscle tightness. Again, he left those in for 20 minutes or so while we talked more. About the music he liked, the food he liked, how he hated American food and the way it tasted and how even Chinese food in America tasted off.

After those needles came out he then did a few on my face and ears to help with my sensory input as I explained to him earlier in one of our conversation about my struggle with sensory overloads and too much stimuli. He did two on my cheeks, one between my eyebrows, and two on my ears. None of them hurt, but it definitely was weird to be able to see them out of the corners of my eyes.

And lastly he did my legs, this one he used the most needles on since it was my primary complaint aside from my back. About 50 or so needles were placed from my upper thighs and hips to my ankles, all according to a path of energy flow he talked about that was blocked off and was causing my pain.

After nearly an hour and a half of letting him stick needles all over me, it was all over and I was free to go. And I honestly did feel a lot better, less tense, more energy. Maybe it was the adrenaline, or being able to relax around him in a way that I can’t with other doctors or even most people really, but I walked away feeling much better.

The rest of the day I did activities with dad, Sara, and my brother for the last day of the cruise. We even got a family photo taken.

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[Image shows me with my cane in a navy shirt and khaki pants, Sara in a black, white and teal dress, my dad in a matching teal shirt and khakis, and my brother in a red shirt and grey jeans in front of the cruise ship.]

That day my formula bag leaked and ruined my phone. I tried to pretend it didn’t bother me, but I am upset over the photos I am going to lose because of it.

The next day we got off the boat, a lot easier than the struggle I had getting on the boat. We drove home, unpacked and rested. Vacation was over and I felt a little numb from it all. It’s like the saying what goes up must come down. All the overloads and stimuli were gone, I was back to my house, and while it felt peaceful, it felt empty. It was just adjusting to the lack of stimuli.

Being home brought on new problems, upon lifting my luggage I pulled a muscle by my stoma that still hasn’t stopped aching, I had to pull my tube because where it got tugged while snorkeling it was misplaced, I had therapy coming up and have been growing annoyed at hearing the same thing each time I go: “It’s just how you are wired.” Like okay, I get that, but I want something done about it. I want solutions better than just repeatedly counting to four. And then incompetent doctors who cannot communicate to one another. The local radiologist who does my placements wasn’t working at the lab, so the only way I could get my tube replaced is to go to the ER and have the basic tests run, and also the radiologist was refusing to replace it until I get some test done to prove I didn’t get any infection from snorkeling which makes zero sense when they are still planning on doing my entyvio infusion Friday.

And after a rough day at therapy, and a lack of people understanding, and doctors who can’t do anything, I really feel like throwing in the towel today and just saying “Screw it. I won’t get my tube back. And I’m not going to my infusion. I’m not taking any of the ridiculous medicine and I’m not doing any other of your ideas. I’m done. Screw you.” Cause honestly I’m just really tired of it. I know that that isn’t an option, to just give up. But seriously, I’m so tired of it all. I wish I could go back to that rock I was sitting on in Nassau and watch the fish swim by as my brother tried to catch them and everything was so much more peaceful and surreal. It feels like a distant dream now, if it weren’t for the photos, I would almost believe it was.

 

Being Sick Doesn’t Exclude You From Ableism

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[Image shows 3 spoons laying on a laptop keyboard. Overlaid is a clipart of torn notebook paper with a red paper clip. On the paper reads in black text, “Being Sick Doesn’t Exclude You From Ableism” with a pink and white daisy over the text. At the bottom of the banner is the URL for Thee Crohnie Grace Blog.]

I think it is important to address the term ableism before I discuss the rest of this. Ableism is discrimination against disabled people. This can be in the form of words and actions. In the form of telling people what they should be doing, insisting they aren’t doing enough, things such as “others have it worse”, not making things accessible, etc.

Now to get into the topic at hand. Just because you are chronically ill or disabled, does not excuse you from being ableist to other chronically ill or disabled people. I see this happen a lot in support groups, far more often than it should, and I’ve encountered people as well who seem to have an issue with it as well.

Support groups are supposed to be a place where people can go and express their concerns and fears and get support, but lately I’ve been noticing something different happening. People are trying to one up one another, people are ignoring what the original poster has said they have already tried and insisting they try something that they either already have tried or cannot try, the need to try to seek out and out fakers in the community, and the people who have conditions mildly and want to jump straight to last resorts because they think it’s the only way to feel validated by the community.

I have encountered people who feel they get to police the thoughts and feelings of those, “You should be lucky your doctor gave you a feeding tube, I have lost 20lbs in the last 6 months and my doctors won’t do anything.” (Yes a message I have gotten before).

I’ve had people message me things like, “I wish I could get that sick again so I could lose weight.”  or that since I’m young I should be healthier than someone who is older and sick.

I’m typically used to hearing some of these things from people who do not deal with these issues on a daily basis, but it hurts much more when it is people in the community that are displaying this same behaviour. Things such as people in support groups saying they would rather die than have a tube on their face, or have to get an ostomy.

Then you have the people in the support group that had some miracle happen for them and they swear it will cure you and solve all your problems, like a change in diet, new supplements, exercise regime, etc. And they often become pushy about it, and then will say things like “Well if you’re not willing to try then you don’t really want to get better.” When really those things are just not scientifically supported and I trust my doctors more than a random person online.

Now to discuss the one upping and trying to belittle someone’s struggle. In support groups it seems that when someone talks about something struggling to them, there always seems to be one comment that is something along the lines of “Oh yeah, I have that but I have it worse.” Or when someone does something despite their illness they tend to get the condescending response of, “Oh wow, you’re so much more productive than me. I don’t know how you can do it. I could never do that.” Insinuating that you must be so much better off than them because you did something, but some people do not have the choice but to push through the pain. I know so many people who probably shouldn’t work but they can’t quit no matter how bad things get because they would lose their insurance or their home.

And now for the big one: trying to out fakers in the community. Ever so often someone will be outed by family or get caught up in their own lies and you will discover that someone lied about having an illness, for what reasons, who knows, but it has happened a couple of times now in my time in the community. While it is terrible that it happens, it has made people very skeptical of everything. People began to look for every inconsistency in someone’s story, looking closely and over thinking posts, until they start to think that so-and-so is faking their illness and must be outed. When more often times than not, any inconsistency was a mistake made by too many pain meds or brain fog.

This need to find the fakers, is a toxic thing in some communities. It pins people against each other, causes more stress to the person in question who is already having a hard enough time, and can even lead to stalking. I had a friend who was in the hospital and people in a support group began to stalk her, calling her hospital and trying to find personal information on her because they got paranoid, all over a small mix up of terms.

This kind of behaviour should not be acceptable in support groups, we are supposed to be here to lift up, encourage, and help on another. More often than not I find myself leaving support groups or unfollowing them because of the unnecessary drama that a handful of people will cause.

Being sick is not a contest, everyone’s suffering and struggle is valid, everyone’s feelings are valid, we should try to be more understanding and supporting and stop and ask ourselves, “How would we feel if someone said that to me?” And if you would feel bad, then you shouldn’t say it to someone in the community. It’s like the golden rule of treat others the way you want to be treated. Just be nice, it’s a hard enough time as it is without everyone tearing each other down.

 

 

 

 

Mobility Aids = Freedom

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[image shows 3 spoons laying on a laptop keyboard. Overlaid is clipart of torn white notebook paper with a red paper clip. On it is the disabled symbol of a stick figure in a wheelchair and black text that reads “Mobility Aids = Freedom”. At the bottom of the banner is the URL for TheeCrohnieGrace Blog.]

Upon finally getting my own wheelchair, I have been faced with ableism not only internalized from myself for not feeling disabled enough for a wheelchair, but also by some of those around me who also feel this way.

When stories like “Me Before You” are becoming wildly popular where a man in a wheelchair decides his life isn’t worth living now that he is disabled and decides to kill himself instead, it makes it hard when the world paints disabled people as helpless and a burden. But my wheelchair and my cane are anything but, and for many others their mobility devices are their key to freedom and definitely not a death sentence.

When my friends are going out and having fun, I have to choose between staying home and not being in pain or going out and being in pain all night for it. I should not have to suffer to enjoy my time, and that is what mobility aids are for. With a wheelchair I can go to the zoo, I can go to aquariums, I could roll around the mall for hours with my friends. But the cost for that is great, being met with stares, uninvited questions, my brother telling me he won’t be seen around me even if I am just using a cane on a good day.

I made a vow though, that I was not going to let my pain stop me, and that is exactly what I am doing. Mobility aids are made for this purpose, so that I can feel included in activities when my friends want to do something that I physically cannot do without punishment to my body later.

There is nothing shameful in using a mobility device. They are the wings that many people fly on. Nobody is confined to a wheelchair, we are free in a wheelchair with the opportunity to explore the world and have fun.

Of course there is the problem of accessibility, but that can only be changed in time by speaking up about it. And I want to focus on the positive aspects right now.

My friends this weekend decided to go hiking, and they didn’t invite me to go either because they said “You can’t walk that.” While they weren’t wrong, it doesn’t mean I couldn’t have rolled that. With a wheelchair I can combat the pain, dizziness, and fatigue that comes with walking just short distances for me.

Being in a wheelchair is nothing to be ashamed about. It is not giving up if you use a wheelchair. It’s knowing your limits, accepting those limits and finding ways to combat it so you can do anything you want to do again. I’ve accepted my limits, but I have so much living to do still, and if I have to do that living while sitting down and rolling myself, then that is what I will do.

[Image 1 on the left shows me sitting in a wheelchair relaxed, I’m in black shorts and a burgundy sweatshirt. I have short red hair, make up on, NJ tube hooked up. I am staring off into space. Image 2 shows me again but sitting upright and my hands on the wheels looking at the camera.]

Mental Health Correlations With Physical Health

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[Image shows 3 spoons laying on a laptop keyboard. Overlaid is a clipart of a white piece of torn notebook paper with a red paper clip. On the paper reads in black text “Mental Health Correlations With Physical Health” and a green distressed smiley face. At the bottom of the banner is the URL for TheeCrohnieGrace Blog.]

I’m going to start off with my unpopular opinion which to most physically ill people is not that unpopular of an opinion. So, the posts/videos/etc about “If Mental Illnesses Were Treated Like Physical Illnesses.”, I am not a fan. As someone who suffers from both I can tell you that neither get treated better than the other and the lack of compassion is still there from the majority of the world.

What most people do not seem to understand is that people who suffer from physical illnesses/disabilities are likely to develop anxiety of depression because of it. In almost every support group I have been in, the majority of them were also on some pill for their anxiety or depression brought on by their disease/disorder/etc.

I want to talk specifically on my own experiences with this, because I can only speak for myself, not everyone else. When I first got sick, few took me seriously. My teacher thought I was faking my stomach pain that left me in the fetal position during recess. When I was in the hospital for a long period of time, the teacher and principal both refused to take any of my make up work, kicked me off the student council, and when I got back kid’s called me names because my face was swollen from the high dose of prednisone I was on.

This led to lots of anxiety, depression, and issues with my self esteem. It was a lot more than most kids had to deal with at that age (although now thanks to support groups I know I was not alone in my childhood even).

I started seeing my first psychologist the same year I got sick, was put on antidepressants a few years later. I lost my sense of identity in it all. I wasn’t sure who I really was, depression will do that to you sometimes.

As the years went on, the depression hit its peak, but then started getting better once I started immersing myself in support groups, meeting other young kids, people who had been through more hell than I had, and still managed to keep a smile on their face.

I wanted to be more like those young adults who smiled in the face of their illnesses both mental and physical.

“Recovery is not linear though.” It takes time. And that’s okay. There are still days when I am in so much pain and feel like people don’t get it and I will get depressed, the days when my brother makes fun of me for using a mobility device, the days I worry about ostomy leaks, when my chest hurts and the anxiety sets in.

My mental health correlates directly with my physical health sometimes. I am more likely to get overwhelmed and have a meltdown when I am already in pain, or nauseated, or dizzy because that is a lot of stimuli as it is, and then people will ask you a million questions which makes me uneasy, and then I will find myself agitated before finally escaping to be alone and melting down: crying, screaming, hitting myself.

Recovery isn’t linear. I’m working hard in therapy to better myself, not for anyone else but myself. These things take time, and I will never be perfect because nobody is. And I know that as long as I have my physical illnesses (Crohn’s, Gastroparesis, EDS) that I will always have bouts of anxiety and depression because there are some days when you can’t help but to worry about what the future holds, or get upset over how you may feel robbed of opportunities. It does get better though.

I thought I would never be at the peace of mind that I am now, and it’s because I’m not trying to be someone I am not, I’m open about myself, I’ve met hundreds of other beautiful souls who are struggling just as I do, and while these diseases may be awful, they have given me some wonderful friendships that I wouldn’t trade for the world.

 

 

Why I Am Not Going to Let My Pain Stop Me Anymore

 

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[Image shows 3 spoons laying on a laptop keyboard. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the paper reads in black text “Why I Am Not Going to Let My Pain Stop Me Anymore”. Then a clipart of the standard pain scale used my medical practitioners. At the bottom of the banner in red text is the URL for theecrohniegrace blog]

At the beginning of college I got the opportunity to join their soccer team. It would be the first major thing I had done since my ostomy surgery.It was mostly just a recreational team that they were putting together, the majority were men in their 20s or 30s, I was the only girl who showed up. Already discouraged by that the first day, on top of that, practice was terrible. After a couple practice runs, my body was searing in pain, and it also started raining, and not just like a sprinkle, but like “Flash Flood Warning” down pour.

When I got home I was so sore, and so uncomfortable with the idea of being the only female on the team, as well as the coach informed me he was unsure I would be allowed to play with my ostomy since it would put me at risk that he wanted a doctor’s note saying I was okay to play. Jumping through all those hoops while in pain seemed like too much. So I didn’t go back. The coach texted me and invited me to come down to Applebee’s with everyone even to watch soccer games and hang out, but food was a no go for me and still I felt awkward and out of place.

Soon I started missing out on other things, events at school, opportunities to hang out with friends, or when I would hang out I would bail early or sit out if they were doing something that required a ton of walking because I would get in pain and become dizzy.

The first time it occurred to me that I didn’t have to choose between having fun and being in pain was when I was out with my friends and her baby. After walking around the mall for a few hours, my heart rate was 130, my knees and hips were throbbing in beat with my heart beat, and I was so exhausted cause I had opted to not start my feeds til halfway through the day because sometimes I’m just a bad patient and a stubborn teenager who to quote Marlin from Finding Nemo, “You think you can do these things Nemo and you just can’t!”

So  as we pulled in to Toys R Us, I got up the courage to say, “You guys go ahead I will wait here. I’m not feeling too good.” And I honestly thought they would leave it at that, but what she said was even better.

“There’s no reason for you to miss out, come on, we’ll get you a wheelchair.”

And just like that I was able to continue to hang out with my friends, I started using a cane more after that to take pressure off of my left hip when I walked so it wouldn’t pop out of place as much. I started realizing I can still do things, even if it means taking a cane or using a wheelchair, and that it was far better than sitting at home in pain all the time.

This summer I have done so much already. And yes, it is exhausting and today is my physical rest day where I am gonna sit, write, and rest. Maybe finish How I Met Your Mother for the umpteenth time. Maybe play a board game with my brother or boyfriend. Maybe paint or crochet, or sit on the porch and work on my mini porch garden (chronic illness friendly garden). Even on rest days, the possibilities of what I can do are endless. Yes, I am in pain, but I have so much I want to do, and I am not gonna let that stop me.

 

Disclaimer: It’s also okay if your pain does stop you. They do not call chronic pain disabling for no reason. It makes you not abled, dis abled. And that is okay. You do what you want and need to feel the best you can. Pushing yourself is not always a good idea, so do not always think well “She’s pushing herself so I need to as well.” Do what is best for your body.

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[Image shows me sitting on the couch. I have short red hair that bangs sweep across my face, black and green glasses, my eyeliner is done, my NJ tube, and some lipstick on. I’m wearing a wire wrapped crystal necklace and a bright blue shirt with the Cincinnati Children’s hospital name and logo.]

Have a great day!

 

Chronically Fabulous Birthday Fun

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[Image shows three spoons laying on a laptop keyboard. Overlaid is a clipart of torn notebook paper with a red paperclip. On the paper is a red party hat over the words “Chronically Fabulous Birthday Fun”. At the bottom of the banner is the URL for Thee Crohnie Grace Blog.]

A week ago my brother and boyfriend talked about what we should do for my birthday. They were going to surprise me with a trip, but knowing I like to plan for things and have a heads up about things, they chose to ask me instead. They wanted to take me to a state park in Ohio known as Stroud’s Run, where we could canoe and swim and hang out.

I agreed it sounded like fun so come June 6th, we all got up bright and early. It was a bit of a drive for us, so we wanted to get a head start so we had plenty of time. We got some coffee because I had gotten little sleep the night before, and then picked up friends and headed out. I left my cane at home and was determined to have a day without my illnesses interfering.

We got a bit lost thanks to GPS mistakes but soon ended up right on the correct path. Once we got there, my boyfriend and brother headed straight for the canoes. My shoulder was a bit too sore from the last of my stitches/strip coming off so I opted to just wade in the lake, just up to my knees. I swore I wasn’t going to swim even though I had put on a bathing suit just in case.

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[image shows me standing in lake water up to my knees. I’m wearing pale blue lace shorts, a blue with daisies ostomy cover, and a bikini tank top that is blue and black with patterns. My palms are positioned outward showing my crystal tattoo and purple and green awareness tattoos. I’m smiling and have my glasses on, bright red hair, and NJ tube.]

Hollee and I took lots of photos. Just of the scenery and the people, and dogs. We took photos of Chris (my boyfriend) and Ross (my brother) canoeing. They didn’t canoe more than half an hour before coming back because my brother got tired of rowing, so they switched off for a bit.

We let the guys take photos of us hanging out as well.

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[image shows me standing next to my best friend. I’ve got my hand holding my bangs out of my hair, I’m laughing and m y eyes are closed. Hollee is doing the same. I’m wearing a a tropical design shirt and she is wearing a grey crop top. Her brown hair is pulled back into a pony tail. ]

It was windy but nice, we were laughing so hard as the photo was taken trying to keep our bangs out of our face. Soon Chris and our other friend returned and they all grabbed their towels and shoes and went down onto the beach (lake-beach). First they just waded in but then they both took off full speed out as far as they could!

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[image shows three boys taking off into the water, a line of trees in front of them.]

I wasn’t going to swim because I was nervous about my ostomy, as I technically had still never fully submerged it. But soon it looked like they were having so much fun so I took off my cloth shorts and took off my fit bit, which I accidentally dropped in the lake but caught before it was lost. Hollee took my stuff for me and put it with my clothes and shoes on the beach.

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[Me standing up to my knees in water, my arms spread outward, in my full bathing suit (black shorts and blue/black patterned top. Still got my glasses on and daisy ostomy cover.]

I took off my ostomy cover and tucked it into my swim suit bottoms. I then slowly started wading out deeper, until I was submerged from the waist down and then out further until I was almost fully submerged. Soon Hollee and the rest of them followed.

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[image shows Hollee standing in the water with jean shorts that are pale blue and a bit torn, and a grey tied crop top. She is making peace signs with both her hands and smiling.]

We all swam around and joked and laughed. Afterwards we went home, showered and hung out and just relaxed for the rest of the night.

I celebrated my birthday with my dad earlier that week, and then celebrated my birthday with my mom today before Trivia Night at the local Coffee Bar.

Overall this birthday has been phenomenal. 19 doesn’t feel much different.

Except for the stress tied to growing older. I have a super huge fear of losing the ones I love, and I know it is inevitable. But with each year that people celebrate my life, I feel more like it’s a count down as people grow older. It sends this fear through my body that time is limited and to treasure each day, for me to make an effort to spend more time with those I love. I am so afraid of losing my mom and dad and grandparents that it hits me hard on my birthday that I am getting older, and so are they. And I’m never gonna get those moments back when I was little, and if I don’t make an effort now, I may not get the chance later in life. I know a lot of it is anxiety. But I see people talk all the time when they lose their parents or grandparents about how they wish they could talk to them again or spend time with them one last time, and I don’t want any regrets when I lose those I love. I want to be able to say, I spent time with them, I cherished them.

It seems like a silly thing to think about on your birthday, but ever since I was 13 I remember staying up all night crying the day before my birthday, stressing about how time flies and we don’t ever get that time back. It’s like congratulations you lived to 19, here’s a coffee machine and the impending fear of people you love growing closer and closer to their inevitable death.

Besides the anxiety, and the pain and exhaustion by the time I got home, it was a great day. I could not have asked for a more perfect birthday, and for so many people to wish me a happy birthday. And here is to many more like it!

Entyvio Round #2

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[Image shows three spoons laying on a laptop keyboard. Overlaid is clipart of torn notebook paper with a red paper clip. It reads “Entyvio Round #2” with the Entyvio (vedolizumab) symbol below it.]

Friday was my second round of Entyvio at the infusion center locally. Rather than driving four hours to Cincinnati for a thirty minute infusion, we were able to have it scheduled to do locally. I woke up early to get ready because I was nervous about my first time being accessed while awake.

I had already had it planned that I would put in my headphones, turn up the music loud, and just suck it up cause it would only take a second, even if it hurt, it would be over fast. I kept repeating that to myself as I picked out a tank top that would hopefully give easy access to my all-access-pass aka my port.

My mom picked me up and we headed off. The infusion clinic was in the same building as the outpatient lab, just on the other side of the building. We parked, headed in and checked in, I filled out all their paper work and got taken back to the infusion area. It was mostly filled with elderly folk with one person who looked in their 30s or 40s.

The nurse was also a bit older, but super nice. She asked for all my info again and then pulled out stuff to start an IV, when I told her I had a port. She seemed relieved and said, “Well that makes this easier!” Which was a relief to me.

So instead she gathered up stuff for a port, we had a bit of confusion over the needle size because the size of the needle they put in that comes with the port, they don’t have elsewhere. But she found something she thought would work, and I trusted her.

As she walked over and cleaned me, I prepped myself and put in a headphone and found a good song. She came over with the needle and I stopped her long enough to press play. Within of second of pressing play, she stuck me. And that was it. A little pressure but not nearly as much pain as starting an IV. I was incredibly relieved and happy. Since I had grown to fear IVs due to being stuck so many times, infiltrations, etc, this was a huge relief and pleasant change. It drew blood and flushed perfectly.

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[image shows me from the glasses to upper chest sitting in the infusion chair. I had my black and green glasses on, NJ tube, I’m wearing a grey tank top that has an image of Thor on it, I’m pulling it down to show where the port has been accessed.]

Now I just had to wait for them to bring up my medication. They have the pharmacist deliver the Entyvio, I guess because of how expensive it is. It costs up to $25,ooo for each infusion.

The nurse and I chatted in the meantime. She asked me how long I would have to have my feeding tube, and I explained I wasn’t really sure because I had Gastroparesis. Then she got interested in it because she was like “Well they couldn’t have used an NG then cause the stomach isn’t working so is that an NJ?” And she asked me about what I was getting the Entyvio for and I talked to her about my Crohn’s. She asked how getting my port went, and I told her for the most part it went really well except for waking up was a bit of a struggle because their local numbing didn’t work because of EDS.

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[Image shows a clear bag filled with my medicine hung up on an IV pole with a drip and tubing.]

Then they brought up my medication and hooked me up. I asked again to make sure it was only going to be 30 minutes. It was great to have a short infusion instead of like Remicade where it was 4 hours, which for me became 8 hours because of a reaction I had to it. I thought 30 minutes would go by a lot quicker but one can only scroll on social media for so long before getting bored. I went to download a game, but I didn’t have any wifi so by the time the game had downloaded, the IV pump beeped letting me know that my infusion was already over.

The nurse helped remove the tape and de-access me. And after a small cotton ball and paper tape, I was free to go! Now only 12 more weeks before I will know if it even is working!