Tattoos and Chronic Illnesses

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[Image shows three spoons on a laptop keyboard, in the centre there is a white banner outlined in black, with words in black text that read “Tattoos and Chronic Illnesses” with two interlocking green and purple awareness ribbons above the text”]

Tattoos and piercings used to be considered taboos almost in the United States, but are now approaching a relative norm. Typically people pick something that means a lot to them to put on their skin forever, other just pick pretty things, or there are the occasional inebriated decision that leads to you picking the name of that ex you missed at 2am that you will inevitably regret and get covered up in a month. Regardless of what you get, tattoos are everywhere anymore.

When I was younger (maybe 15 or so), I knew I wanted to get a purple awareness ribbon for Crohn’s since I had struggled with it most of my life. Of course by the time 18 rolled around, I was actually too nervous to get a tattoo. I put it off for almost a year. I was diagnosed with Gastroparesis in that time and decided I wanted to do something with both ribbons. Every time I went to call the tattoo place my hands would get shaky and I would think back to the videos my friend had showed me on youtube of a grown man throwing a fit because he was in pain. I was terrified that I would start to get a tattoo, wouldn’t be able to handle the pain and end up leaving with an unfinished tattoo.

So I continued to put it off til December, my friend and I were hanging out. She had just gotten her license and a job and wanted to get her septum pierced. She wanted me to get mine pierced too but I didn’t want to give my grandmother a heart attack by coming home with a piercing. While my friend sat there and talked to the piercer. I talked to one of the Tattoo Artists at the Lure  (Click to go to their facebook page). And I decided to make an appointment for the next month and put down a down payment.

Robert, the artist, drew up a quick sketch and showed me and I was excited, still nervous, but excited. I mentioned that I also had some other issues like possible Ehlers Danlos which can cause extra stretchy skin and a slower healing rate. He went out of his way to do some research on it before the tattoo date.

My friend and boyfriend were shocked and told me they bet I would chicken out before the day came. This wasn’t the first time they had made bets with me. I once remember my boyfriend betting me I wouldn’t be able to put down my own NG tube. I hate when people tell me that they don’t think I can do something, only makes me want to do it more so I can prove a point.

Of course though shortly after Christmas, a week before I was to go and get my tattoo I came down with a horrible cold and turned out I had mono. I didn’t want to risk anyone else’s health by getting a tattoo while I had mono, so I called and rescheduled. Though I was partially tempted to just call the thing off.

February came around though and when the day came I was psyched, but my hands still shook as I tried to contemplate in my head how good my pain tolerance was. I kept trying to tell myself I had been through worse pains with my Crohn’s, Gastroparesis, EDS, etc, so a tattoo should be nothing in comparison. I was still nervous.

I remember I sat down and asked him to explain things step by step because it makes me less anxious if I know how things work. I had remembered hearing horror stories from my mom that it’s like they take a small razor and cut the design into your skin and what not. I think it might have been a bit of an exaggeration or maybe that was how they used to do tattoos, I’m not sure.

He explained everything to me down to the smallest things. He got ready to start and my heart beat louder, but once the needles hit my skin all I could feel was the vibrating. I hardly felt any pain. It felt more like maybe a cat scratch or like sometimes if your nails are jagged and you scratch yourself whilst trying to itch. It was a strange sensation but not painful.

I ended up talking through the entire hour of tattooing, we listened to music, talked about how he started getting into tattooing, how he even did some of his own tattoos on himself which blew my mind.

When it was over I was still bleeding a bit but not badly, and was really happy and impressed, not only with the work but with my own tolerance.

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[Image shows a purple ribbon interlocked with a green ribbon on goosebumpy skin and my medical bracelet.]

It had been a couple months since I got it. No regrets. I think it made me happy because when you have a chronic illness you have little control over your body. I don’t get to control my pain levels, I don’t get to control what happens to me often. My body is at the mercy of my defective genetics and the doctors. I don’t have much control over the fact I now have an ileostomy and feeding tube. I wanted something for me. I wanted to do something to my body that nobody else had control over, to make my body mine. And it felt freeing to get a tattoo that I wanted, to control the pain and get something beautiful out of it.

Something beautiful that reminded me that I still had a say in my body.

Naturally, within a week of that one being healed I was already looking at a handful of others that I wanted. Between the endorphins that come with getting a tattoo and that feeling of having control over your body, I understand now why people get covered head to toe in them.

I had a handful in mind: Leopard geckos, chameleons, trout, comic book themed tattoos (the phoenix symbol from X-Men cause I am Jean Grey), and then I found a pretty tattoo of crystals but I wanted my own design of things because I think tattoos should be unique and no two should be the same. It’s why I am not a fan of the overdone tattoos because too many people have the same one and I want mine to be unique.

So towards the end of the semester I decided to reward myself with another tattoo because this semester was rough with my health and I’ve still managed-despite ER trips and hospitalizations and everything- to keep my grade up. I passed my computer final with an A, passed the entire class with a B+, and am doing great in all my other classes.

So about two weeks ago I went back and talked about getting crystals done. This started partially because of an inside joke where while playing a game I shouted “I’m a freakin’ gem!” and now any type of gem reference I get tagged in or they will make references to it frequently, I now own a viking chair that has runes on it that say “Gem” with a gem on the seat. One of my friends got me a sew on patch with a crystal that says “I’m a gem.” So forth. But I also work a lot with crystals in my jewelry. I do wire wrapping, I do crystal healing, meditation, etc. I love crystals and the energy they have. I a bit of a crystal hippie in a way.

Any who, so yesterday I got my 2nd tattoo. Two hours. Well worth it. I was so impressed by the work and his design and color choice. I couldn’t have asked for a better tattoo that really sticks out for me. The colors were three of my favorite: cyan blue, deep purple, and a mix of like a hot pink and bumble gum or pastel pink. Over all super beautiful colors. He did some stippling (learned that word yesterday) aka dots around it to really make it pop and it did.

After the tattoo was done people got photos and I ended up sending a friend request to the piercer because she too loves crystals and working with them. Everyone was stoked and so was I.

[Image shows the crystal cluster tattoo and how it wraps around my itty bitty arm]

This one doesn’t have as much meaning, but never the less, it made me feel in control of my body, it’s the only pain I do get a say in. It’s the beauty of tattoos, I’m not getting them for anyone else, I’m not doing them for anyone else. This is on my body, for me. It’s one of the first times I’ve ever felt like I truly own my own body.

School Finals Tips for Spoonies

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Deep breaths. You’re probably trying to debate on whether it is anxiety causing your heart to flutter or if you may be suffering from a heart attack. It’s okay, I was there just yesterday whilst attempting my computer final.

You, just like many others, are just experiencing the anxiety that comes with the dreaded finals week of college. Just last night I found myself choosing to lock myself in a bathroom after multiple failed attempts at an integrated project that required me to know more about Microsoft Access than I did, but there are ways to make things easier. Tips!

First of all, do as I say not as I do when I say don’t procrastinate. Start earlier, whether it is studying, writing those papers, doing research, etc. When you are chronically ill, you never know when there may be a day you can’t do something, so give yourself extra time. Do not wait until the weekend before to write the four essays you have due on Monday and choose to write a blog post instead, says the blogger writing blog posts instead of her 10 page English final.

Secondly, while most students flock to coffee and energy drinks for their finals, try juices or Gatorade/Powerade instead. I know for me that after less than half of an energy drink my heart flutters more than a flock of butterfly. Gatorade can perk me up and give me the energy I need to stay focused and hydrated without the nasty side effects that energy drinks tend to have on the chronically ill.

Third, do you work better by yourself or with other people quizzing you? Knowing which ways you learn better can help you set up a better study system. For me, I know it helps to have my grandmother or friend ask me questions or read the definitions and me guess. The verbal recitation of things helps me. Some people do better writing things over and over until they remember. Knowing your learning type can help with this a lot, and it will save you lots of spoons mentally if you are not wasting mental energy trying to force yourself to learn a way that you are not made to!

Fourth, take breaks when you need. I get overwhelmed easily when things don’t come as naturally to me as other things do. So rather than getting upset and flustered and maybe tossing your computer out a window, because it’s oh so tempting sometimes, just take a breather. Go get some food, rehydrate, take a bubble bath, paint your nails, read a book you enjoy, or watch a few (I repeat, a few) episodes of your favorite show. Once you have calmed down and can refocus, then you can get back to work and more easily solve problems.

Fifth, stay well rested! You will not be able to study or take a final on only a few hours of sleep. While a healthy person may be able to strain their body that way, you are putting yours at much higher risk. If you have a sleep schedule, stick to it. If you don’t, try to arrange one (I know it can be very hard) to allow yourself the right amount of sleep!

Sixth, stay nourished. They say breakfast is the most important meal of the day. Even if that meal is Ensure or formula through a tube or TPN, keeping your electrolytes in order can lessen your amount of brain fog and help you focus better while testing.

Seventh, do NOT forget your medication. I know you may be focused on school and not be thinking, but remember your health is more important. So remember to take your meds!

Eighth, don’t be afraid to ask for help from your professors. Their job is to teach you and help you. If you happen to get stuck with that one professor who hates children and probably shouldn’t be a professor anyway, talk to your classmates, chances are they are struggling too and may be able to help you even just by explaining something online. This step can be tricky with social anxiety, but you may be relieved to find out that others were just as confused as you. College is basically just one big bowl of confused kids trying to adult.

Ninth, create a reward system. When you finish your chapter you had to read, reward yourself with something small. When you complete the whole book, give yourself a bigger reward. Same with writing a paper or studying, it can help to reward yourself and give yourself some incentive to keep going. Even if that reward is a nap.

Tenth, know that no matter what happens, you have tried your best and are still deserving of love and affection. Your grade does not determine your worth. Yes, it does hurt to fail, but you can retake the class the next semester (Even I had to do it). And know that even if you fail, it doesn’t mean you can’t make a come back next semester.

 

Just relax, deep breaths. It is all gonna be okay. Finals suck. They do. It is hard to retain everything you learned over 18 some weeks and regurgitate it onto a paper. Take your time and remember to keep your health in check. Finals won’t matter if you end up in the emergency room instead. If you get overwhelmed, find support groups you can talk to and explain your concerns, they may have some good advice as well. Sometimes even your teacher can be helpful and offer good advice. You got this! Just do your best and try not to over think it or stress too much. It will all be okay, no matter how cliche that sounds.

Entyvio and Everything Else

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[Image: 3 spoons laying on a laptop in black and white, a piece of paper with a paper clip on the edge, with the logo for Entyvio and words beneath that say “And Everything Else”]

My sed rate (inflammation levels) three weeks ago was high and so my doctors mentioned starting Entyvio, a biologic drug similar to Remicade but attacks the white blood cells that create inflammation (at least that’s how the doctor explained it to me). It is administered through IV infusions, the first two infusions two weeks apart, and then 4 weeks, and then 6 weeks, and then every 8 weeks. Although if it is anything like Remicade for me, I will never get passed every 4 weeks. My body builds antibodies to things rather quickly.

Cincinnati ordered a redo of my labwork last week to monitor my sed rate levels. This time it was only 11 which is normal. I said it didn’t make sense for it to go from 52 to 11 in a week with no help, my PCP claimed it was an infection or something despite my WBC (white blood count) not being elevated. I claimed it was a lab error. She told me I should just be happy it was normal, despite feeling rather hellish. Cincinnati agreed with me though and reordered the labwork which proved I was right because my sed rate was high again.

As of today my doctors are trying to decide between just ordering 20mg of prednisone to hold me over until they get everything ready for the Entyvio, or admitting me into the hospital to do a full dose of prednisone via IV, this would also allow them to do the port placement that my doctor agreed would be the best thing for IV access since my veins , and to quote the last phlebotomist who had to stick me, “suck”.

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[Image: diagram of the upper thoracic level of the body, showing the heart and how an implantable port works]

Basically it is surgically placed under the skin and threaded into the heart, I will still have to be stuck, but there won’t be a need for 5 IV attempts anymore because they will be able to just “click” into the port and have access. The other option was a PICC line, but he said that since PICCs are more temporary for only a few weeks or so, and it is going to take 12-14 weeks on the Entyvio before we will be able to even tell if it is working or not.

They will also use it to draw labs before and after infusions to check for one of the rare side effects with Entyvio which is PML Virus. It’s a rare brain virus with no treatment or cure and basically just destroys your nervous system. So if there is any signs of that then they will not do the infusions.

Of course we have no dates set for anything yet because communicating through MyChart is much like emailing each other, and therefore they probably only check it once or twice a day.

Of course all of this is the least of my worries right now. My dear friend, Ari, who I have talked about before, is in bad shape. She has been in the hospital for a few weeks now, she got her central line removed a while back to sepsis and had to get a PICC and then the PICC line got infected and abscessed and a blood clot formed. They were able to dissolve the blood clot and remove the PICC, they replaced a central line in her neck until they could schedule the surgery to place on where they normally go.

They told her that her veins are too weak for anymore PICCs or replacement Central lines. They told her they don’t think she will survive another bout of sepsis (this being her 5th or 6th bout this year) and that if she doesn’t do injections daily she will also likely develop another blood clot.

Ari has been fighting all her life, and is by far the strongest fighter I know. She’s getting tired of it though. Considering they have told her there is nothing they can do for her pain management since all her medication must be through IV. And it’s really just not fair.

Everything she does she does for others. She sends out care packages, is always offering support to others, does anything she can to raise awareness. Her only two wishes so far are she wants to start a 5K race for Ehlers Danlos Syndrome, and she wants to meet me.

Between college and everything I am doing all I can to try to plan a way to fly out there and spend whatever time I can with her. I have never flown though, I don’t know where I would stay or what you do when you get off at an air port. So I would need someone to go with me. I’ve been raising some money to help through gofundme, but even if it doesn’t get filled I will use student loans or something because nothing would make me happier or her happier than seeing each other.

I have been trying to find ways to cheer her up between painting and I had my friend Bella draw her and I together in hopes it might perk her up while in the hospital and keep her spirits up because I cannot imagine how hard it is on her. I know how hard it is on me just watching her suffer but it doesn’t compare to what she is going through.

[Images: First image shows a zebra and where the white of the zebra would have been it is rainbow coloured, as is the mane. The second image is a digital art drawing done by my friend Bella Black of Ari and I sitting together, she has a flower crown on and a pink top and capri pants. I am wearing a green shirt and shorts. ]

A while back I wrote about what it felt like to lose someone in your support group. Those were people I did not know. This is not the case. I know Ari. She is my best friend. I cannot imagine what my life would have been like without her and I certainly cannot imagine what my life will be like when she isn’t here.

She has said she doesn’t want people to be sad when she goes, she wants us to celebrate her life. She wants to be cremated and put into one of those trees. She is the most positive person I know. I love her. She is such a beautiful person. She deserves the world.

If I can give her even 1% of the world she deserves, that would mean the world to me.

This is why awareness matters. Perhaps if Ehlers Danlos Syndrome was better known or if Gastroparesis was better known, then maybe more would be done about these illnesses and syndromes that wreck havoc on people’s bodies.

Ari isn’t giving up yet, she is a fighter. The strongest fighter I know. You can follow her journey on “Oh the Places We Will Roll” on Facebook. 

Unsupportive Comments

Blog postEvery once in a while my family will say something that is unsupportive, I know they mean no wrong by it, I assume they just don’t really know how to deal with it or what to say. In which cases, if you do not have positive things to say then just say “I don’t really know what to say.” I do it all the time when I don’t know the right words to say to my friends in the hospital because I know they do not want advice, they all have been dealing with it for so long they already know just as much as any M.D. on their condition. I am no different.

I know the risks with every medication, I know that yoga isn’t going to cure me, nor is a salad. I also know that the medications all have bad side effects, that’s just a thing with medications.

When it comes to medications, I am 18, I am not uneducated, I know how to weigh the pros and cons in comparison to how I feel without the medication versus the medication side effects. So when I have family guilting me, begging me not to try medication, or not to stay on medication, they have no idea the corner they push me into between my health, what doctors are saying, and then their unsupportive comments.

For example, when I was on humira at one point my mom and grandma told me that if I wanted to stay on humira that I wouldn’t do it with them and that I would have to go move in with my dad. My doctors were pushing me to up my dose and stay on the medication because at the time my Crohn’s had gotten worse and the medication wasn’t controlling it.

I know they were worried, but it made me feel like they were abandoning me. And I feel that same struggle again as the doctors push Entyvio.

My family is pushing for random alternative things to try and begging me to not do the Entyvio and playing emotional mind games with me and sending me links about all these natural things trying to sway me as if their links are the same as a Ph. D.

I love them, once again, do not mistake this venting in any way to me not loving my family full heartedly.

But all I hear from them is, “Well when is the doctor gonna reverse your ileostomy? You’ll feel much better without it.” When in comparison I feel better emotionally not having to spend most of my day in the bathroom. “When is your doctor gonna fix your fistulas?” When they’ve already done everything they can. “They don’t care about you, they just wanna make their money. Big Pharma. Etc.” “That medication will only mess you up more.” “You should try this.” “You should try that.” “Look at this MAP vaccine!” “Look at this document about cures!” “Get your hopes up for cures instead of trying any treatments available to make your quality of life better!” Obviously a bit paraphrased and maybe not word for word. But after hearing the same thing for YEARS, it gets overwhelming and tiresome.

Just today I was talking about how I was upset that I couldn’t do as much because my joints are always aching and in pain and so walking and doing things seems undesirable or I get grouchy and agitated later after pushing myself to the expectations of someone who is abled bodied. (This event was a harsh reminder of the limitations my body has now) And all people want to say is “You need to do more, train your body to adjust.” But with Ehlers Danlos Syndrome, it doesn’t work that way. My grandma says, “Well you can’t do anything about it.” But I could if my family wasn’t so against things and so against me making my own decisions essentially. They want me to look abled bodied, they want me to act abled bodied, they push me to be an adult and make my own life choices but when I do they chastise me for not making the decisions they want.

Have I contemplated a wheelchair for events? Yes, yes I have. Because do you know how amazing it would be to go around the event and not be slower than a snail and be in pain, to be able to move from place to place and talk to people and not have to choose between chatting and taking photos and being in pain later or sitting alone whilst everyone does their own things but at least I am not in pain.

I don’t think they take my pain seriously sometimes because I am not always doubled over crying. But I very seldom cry about pain ever anymore unless it is a 9. I’ve adjusted. I take a tramadol, I move on. Most days I stay on the couch and get called lazy by everyone when they do not feel the pressure I do with every step I take that feels like what I imagine stepping on glass might feel like. It feels like the more pressure I apply on a foot, it sends a shot of pain up my leg. You wouldn’t guess by looking at me though that I am in that much pain. And I try to seldom complain about it because if all I ever did was talk about it, while people might acknowledge it, they would get annoyed with me.

I try very hard. I sometimes won’t use my cane because I don’t wanna listen to my brother or his friends talk about how I don’t really need it and just want attention. So I choose to push myself or sit out of things completely. I chose to stay in the car instead of walk around with friends once, and you know what they did, they insisted I get a wheelchair instead. Meanwhile, I can’t even bring myself to ask most of the time when I’m with family, because for some reason I get this sense like they look down on me not pushing myself to abled bodied standards.

My friends encourage me to do whatever I need for my health, even if it’s getting a wagon for medieval events and decorating it like a dragon, they offer to pull the cart.

At hospitals I get guilted into siding against the doctor. When the doctor wanted to keep me longer for my NJ tube, my mom snapped at me and the doctors and basically put me at odds because she said she wasn’t staying and the doctors told me that it was life or death to stay. The one night I stayed at the hospital all by myself locally was the best night because I didn’t have my dad telling me I needed to “Stay off the internet.” Or my mom telling me she “Wasn’t going to take me to Cincinnati for everything.” When I tried to ease the tension between her and a nurse when they said it would take a month or longer to see the urologist about my kidney stones.

I feel at a loss here, I love my family, and they’re not always unsupportive, I have never had a hospital stay where I didn’t have my family with me and advocating for me, trying to do things to cheer me up when I got down, etc.

But sometimes I feel like I’m only disabled when it’s convenient for them, when they are looking for support. Again, do not get me wrong, I LOVE MY FAMILY, I really do, and I know they love me, and I know most of the time they would do anything for me.

But it is really, and pardon my language but I can’t find a better word for the situation, shitty when I can’t talk to my family about things that happen in therapy because I know they would shove it aside, or that I can’t talk to them about how I feel because my mom will either revert her emotions back on me, or my grandma will just meltdown and then I’ll feel bad, and my dad doesn’t really ever know what to say sometimes.

I know this isn’t 100% their fault because I get agitated too, I lose my cool, I make things stressful on them. Unlike them I can go to behavioral therapy and learn my emotions, how they manifest and how to deal with them; they don’t.

I haven’t made it to the point in therapy yet where I can verbally communicate my feelings to them, they blame my generation, they don’t know the truth of things or what’s going on inside my head and I can’t talk to them about me. I can’t talk to them about how I feel physically or emotionally because it gets downplayed, I feel.

Of course, this is just one side of the story. Maybe they feel differently and don’t know how else to put it, or like I said they haven’t learned how to project the emotions and thoughts they really feel so they just get agitated. It’s not just family, sometimes it’s even people in support groups (typically older people) who do not seem to understand that their comments are unsupportive.

I don’t blame them 100% because I think they just don’t know what to say, they often go straight to advice, some people go straight for the one-up (which by the way is not only annoying because it’s invalidating ones struggle but also because it’s not a competition being sick), they start praying for their god to cure you, or telling you you look nice or don’t look sick as if that makes it better.

 

Maybe there should be classes on supporting people with chronic illnesses Support 101, I’ve gathered a list from various spoonies and myself.

So here is my short class on Chronic Illness Support 101

 

-Don’t offer advice unless it was asked for

-Don’t bring religion into it unless they are religious. I don’t wanna hear if God has a plan for me or that god only gives me what we can handle.

-Don’t tell me I’ve looked good since I’ve lost weight and am now underweight. Don’t tell me I look weird if I’ve put on weight.

-Don’t say “You look fine.” -Lindsey Toothaker

-Don’t suggest me foods to eat, or tell me to eat more. That’s not how this works.

-I don’t care about your grandmother’s cousin’s sister’s boyfriend who had what I had and took this magical supplement and is “cured”.

-Don’t tag me in things talking about cures, I don’t hope anymore for a cure in my life time, if one comes about that will aid others in the future: fine. But my body has endured enough, and letting go of hope has been one of the best things I’ve ever done. You cannot be disappointed if you do not get your hopes up.

– Don’t tell me that the medication I am taking is bad for me. If it helps me, then it’s good for me.

-Don’t say you would rather die instead of having an ileostomy, because who the heck says that? Oh my gosh, that’s just rude.

– Just cause I call myself a cripple, doesn’t make it okay for other people to call me that.

– If someone tags me in one more post about medical marijuana I am gonna roll them up in paper and let someone smoke them.

-If I look upset, instead of assuming I’m “just depressed”: ask. Chances are I don’t feel good physically.

-Stop saying “She’s just blah” when I’m having a bad day, it invalidates everything I am going through because I’m not depressed, typically I am agitated and can’t find the words I want to used.

-Don’t push me to eat, I have a feeding tube for a reason. Doctors wouldn’t have insisted on putting down an NJ tube twice if it wasn’t necessary.

-Don’t tell people “The pain isn’t that bad.” -Bella Black

-Stop saying “Just cheer up, it’s not that bad.” or “Stop overreacting.” In regards to depression and Anxiety. -Skylar Scott Comptom

-Listen to actually autistic people.

-Don’t say “You Don’t Act Autistic” -Josh Wilkinson

-Don’t say “It could be worse, at least you’re not dead.” -Rebecca Haff

– Avoid “You’re too young to be disabled.” – Joshua Fischer 

-Don’t tell people they need to lose weight or gain weight. -Joshua Fischer

-Stop saying things like “You could get a job if you weren’t so lazy. You just aren’t trying hard enough.” -Bella Black

-Enough with the “At least it’s not (insert condition that seems more severe to them).” -Melanie Nussbaum

-Things to avoid for anxiety and depression: “Lots have it worse/it could be worse”, “Smile”, “You’re fine”, “You have nothing to be sad about’, “Appreciate what you have”.
OR “Calm down”, “There’s nothing to be upset about”, “Stop getting emotional”, “You worry too much”, “Wow you’re uptight”. -Lacey Arvin

– In regards to being deaf avoid “You hear what/when you want to hear.”; “You have too good speech to be deaf.”; “You talk too good so you are faking your deafness.”: “You hear about such and such–everyone else knows it”. -Donna M. Williams

-Stop saying things like “You used to be able to do _______” or asking why they can’t do something now if they’ve done it before. -Megan Perrin 

– Another thing is avoid saying “You should be used to it.” -Amber Goff

 

Instead try more supportive comments and actions such as: 

-“I know I don’t understand exactly what you’re going through or how you feel, but if you need someone to talk to, I will listen and try to understand as best as I can.” -Amber Goff

-They don’t need to say they’re sorry or anything along the lines of pity, but rather than being judgmental, just taking us where we are at and understanding that we may not be 100% ‘there’. -Lindsey Toothaker 

-With people who have disorders like depression or anxiety, its more about being supportive. Don’t tell them its all in their head, likely they know that. What we need is to be reassured we are safe and have support. That works best for anxiety. Depression is more about the support as well, letting us know that we are loved and people care. Even if it seems like we don’t believe the speaker, it helps more than i can say. Never make them feel silly or like its unimportant. -Skylar Scott Comptom

-“Don’t worry about it, we can meet any time.”, “I’ll always be there for you.”
I’d like someone to arrange to meet me instead of me doing all the arranging.
I’d like someone to meet at a place that is easy for me for once.
I’d like it if people weren’t embarrassed by my wheelchair -Cassie Gunn 

-“Just being there.” -Brandy Schmidt 

-Saying things like “I believe you.” Rather than dismissing or writing off how we feel.

-“I know you are trying.”

-Just offering to to come over and hang out or just checking in and asking how we are doing.

-Saying “I know this isn’t your fault.”

-“I know that I can’t completely know what you are going through, but I am here if you need to vent or just need a friend” something along those lines. Or “its okay not to be okay”. I hate when people pity me, even though I know it is coming from a good place. It just makes me feel awkward, but just knowing that people are there for me makes all the difference. -Rebecca Haff

-If you don’t understand something, just ask questions, don’t assume. Sometimes asking questions  “…Means that they care enough to learn about my illnesses.” -Rebecca Haff

And if you have no idea what to say, or what to do, that’s fine. Just say “I wish I knew what to say, but I don’t. I hope you know that I care about you and I’m here for you though.”

Again, I love my family and I couldn’t ask for a better family in the world. And this isn’t exclusive to just family, it happens with friends’, strangers, and people in support groups even can be extremely unsupportive sometimes.

I needed to vent, but I also wanted to turn this into an opportunity to educate people on what not to say and what you can say.

I love ALL of you guys, even if you have said something like this before, it doesn’t make you a bad person, you probably didn’t know. But the first step is acknowledging the issue and then taking the steps to improve things. And it won’t happen over night, we all slip up and make mistakes, I even say unsupportive things from time to time and have to catch myself and apologize or just admit that I have no idea what to say but I’m willing to listen. Sometimes that’s all it takes. 

 

 

Amtgard Weekend Event and Post Event

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[Image of Sir Moe’s Knighting as he walks under the swords of the other knights]

 

Friday at 7am we packed up and left to leave for Hagerstown, Maryland. I got all dressed up in garb because I didn’t want to waste any time since I had to be at the event at 2pm for the Roleplay Panel I was offered a spot on.

The car ride was exciting as always as me, my overbelt, my underbelt, and Henry all shared sass and stories. We stopped a few times for food and drink. The first stop at Burger King my overbelt posted this:

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Saying “As we travel I am trying to convince people that the reason Grace Shockey has her medical stuff is because she is really an elf and the world is too toxic for her.”

The other stop that cracked me up was we stopped at a Kroger because I was starting to get sick and turns out I forgot my zofran, not to mention my pill crusher. So we stopped at Kroger’s pharmacy and picked up dramamine instead in hopes that it would at least knock me out so I wouldn’t throw up. The pharmacist stopped me and was like “Oh my gosh where did you get your ears? You’re adorable. Can I get a photo?” So I let them take a photo of me in all my garbed glory.

Instead of Keebler Elf, I’m a Kroger Elf. Any who, I got the medicine into my system which helped take the edge of my sicknesses. We made it to the site on time, and to the panel.

The panel was a bit nerve wrecking because 2 of the four speakers had been on panels before, and the other at least remembered all 4 questions. Meanwhile I forgot the last two questions after “What’s your name and where are you from?” So after I answered that, I paused awkwardly and then the panic set in as I just whispered “Oh no.” I contemplated at the moment just standing up and walking off, but Lord Rellik saved me by going on about how I was the regent at my park and a great one at that and after that I was fine.

After the panel we went to get food and then to the hotel so that those who did not dress up in garb from the beginning could before they went back to the event.

 

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[Me in my brown and green garb with my NJ tube, glasses and circlet, leaving the hotel]

I mostly stayed at Stag Camp that evening since it was a bit chilly, it ended up pouring down the rain and we left early. We chatted in the hotel a bit before I left to take a hot bath and go to bed. I woke up that night at 5am throwing up, stopped my feeds and went back to bed.

That morning people went to the Waffle House and I stayed behind. We then went back to the site where I put in all my A&S Entries and then watched my overbelt’s panel. It was hilarious.

I got to then preform my song I had learned in ASL. I did 7 Years by Lukas Graham which was super fun. Then I hung out at roleplay tavern for a little bit and then back to Stag Camp and took photos. I wish the site wasn’t so huge so that I was able to get more photos but with how much pain my joints were causing me I couldn’t get as many photos as I had wanted. Not to mention the only bathrooms that had handles to help people on and off or that were wheelchair accessible where all the way over inside the feast hall which was both down hill and then back up hill.

While I was trading stuff my overbelt and underbelt went to get Indian food and grab my feeding equipment. Once they got back I hiked my way to the car and got my dress and had a friend help me change out of my garb and into the feast dress. I hung around and chatted with people, collected my A&S entires once judging was over and then headed back to Stag Camp. I got my belt favor from Shannon Ross who had used it to enter in the Dragonmaster.

Spoonie favor

[Image shows an assortment of things such as a quilt, a bag, and then to the left the Spoonie Belt favor made for me by Shannon]

 

Everyone headed up to the feast hall around the same time for food and then court. The line was crazy but luckily I had Dor help me get in but then I remembered my belted family was sitting outside so I had to go back out and sit with them. I ended up bruising my hip on the tables cause they were a tad too close for even tiny me to squeeze through with my cane.

Afterwards we sat down for court where my belted family placed 1st, 3rd, and I placed 4th in the A&S. Then we got to watch awards be given out to people as well as my favorite part which was Moe’s Knighting.

After the knighting we went back to Stag Camp and I got made a full Stag. The rest of people partied while I just struggled to stay warm. I stole Alex’s faux fur to keep me warm which I essentially cocooned myself in. I popped up every so often to put in my two cents during the conversation.

A little after 1am we went back to the hotel after the long day and I took a hot bath, took some pain meds, put on icy hot and laid down. Randi, my underbelt, and I chatted for a couple hours afterwards still.

In the morning we packed up and left after Waffle House. The car ride back was just as exciting as the ride up. We exchanged stories and such about the event, the good and the bad.

Once home I uploaded all the photos I took at the event, took a hot bath, and then promptly fell asleep.

This morning I felt awful so messaged my doctor in Cinci who said to go get some follow up labwork and go from there.

So this week will be focused on getting my new college schedule figured out, sorting out my health, and getting stuff ready for finals as well as the 10 page essay  I have to write for English next week!

I hope everyone is doing good and as always if you are interested in writing for the blog as a guest writer you can follow the directions below!

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If you would like to submit your story or experience this week, you can send me approximately 500-1000 word submission with or without a photo to my email: gshockey@wvup.edu 
Thank you!

Weekly Update

My sedrate two weeks ago was extremely high so my doctors in Cinci had messaged me about starting Entyvio. They wanted me to get labwork to see where my labs were now. These labs came back completely normal. Told my doctors in Cinci about this and they were skeptical because there was no reason for it to randomly drop like that when all my other levels were extremely elevated. But I’ve been so busy this week trying to keep up with college and get projects done for the Amtgard I’m attending this weekend so little has gotten accomplished.

Monday I had college and found out I have a ten page paper in english for my final, had to finish my ten minute speech on Misogyny in the Media for Sociology. Tuesday went alright minus getting sick a couple times and managed to pop my shoulder out of place from laying on the floor. I did great on my speech though minus getting dizzy and it hurting to stand in place for 10 minutes.

Wednesday I finally finished the dress I was working on for this weekend.

It was my first attempt with applique and I was really happy with how it turned out.

My potassium was 3.1 and I’ve been able to tell by the fact when I stand up the room goes dark for a couple minutes and it feels like the air is taken from my lungs and my heart pounds out of my chest.

I had been hoping that with getting in 4 feedings a day that it would have improved the potassium levels but Hypokalemia: 1 Grace: 0

As always I try to push and ignore it because I want to accomplish so much and I do not want to let my health hold me back even though I should slow down.

But my own health was the least of my concerns this weekend as my friend Ari ended up back in the hospital with sepsis, a blood clot, and abscessed PICC line. We got to skype for a little bit tonight which was nice even though she was really out of it. She’s such a fighter and I love her. We both keep fighting no matter what happens because we have a mutual goal in mind: To meet each other.

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This weekend I leave for Maryland for an amtgard event. I’ve been mostly excited but a tad nervous with how my health has been but I got glucose tablets, icy hot, packed all my braces just in case, packed extra ostomy supplies, extra feeding tube supplies, I have my updated medical bracelet and ICE card. As well as I have my new cane now.

This time I’ve decided to stay in a hotel versus camping, just cause it’s not practical with all my medical stuff. But I am really excited because I’ve put a lot of work into projects and stuff for their Arts and Crafts tourney.

I will probably have tons of photos to show people when I get back. And lots of stories as well.

I just always get a bit nervous when I leave town without someone like my mom or grandma or dad with me incase something would happen. I know though that my Amtgard family would take great care of me, it’s just the fear of unknown. I’m sure it will go fine and I should probably just try to get some sleep before 7:00am comes around.

Next week will be focusing back on college and prepping for finals as well as getting more labs, and deciding whether or not to give Entyvio a go and whether or not I will be getting a PICC or a port for that since my veins are already very crappy when it comes to getting IVs started so I would hate to be a pin cushion for every infusion date.

I am also extremely looking forward to seeing my therapist again next week since I have been working on the breathing exercise she showed me and it actually helped calm me down before giving my big speech in class, plus it is just nice to have someone to talk to about everything and my random intrusive thoughts and silly fears that pop up out of no where and send me into random meltdowns. I really like her, she’s the first therapist I’ve had since I was 9 that I didn’t have a distaste for.

And I think that after the meltdowns I had at the last session she might finally have some insight as to what exactly happens during my freak outs and maybe can help me learn a way to diffuse them or at least find ways of keeping me safer while I have them since I have a bad habit of hurting myself when I self destruct.

I’ve been feeling rather indifferent this week, and I think it is because I have kept myself so busy I haven’t had time to think about my emotions at all. I feel bad because I’ve been slacking on keeping track of my emotions and trying to detect why I feel that way for therapy. I’ve been writing down my meltdowns though and what sends me into them though.

I’m hoping to avoid any meltdowns over the weekend, usually the people in Amtgard are very understanding and often can tell when I start to get overwhelmed and can back off, in comparison to some people and family in my life who have no idea and think I’m just agitated or “blah” and so they keep pushing and pushing until I finally break. Hopefully in time I will find a way to open up to them more and talk about all that, but that’s for therapy another day.

In the mean time I want to wish everyone a happy weekend and hope things are going well for anyone who is reading this. Your support and messages always brighten my day so I wanna thank the people who go out of their way daily to message me and tell me how much my blog means to them and so forth. I had someone message me this week telling me that I helped them cope with their new illness and that they were so grateful that they found me because they were really in a dark place and so it is the little messages like that, that remind me why I continue to write, why I keep it realistic and don’t sugar coat things.

So thank you to each and every one of you for your support.

 

Tips for Getting Your Blood Taken

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[Photo image of three spoons laying on a laptop keyboard with a box wit red text that says “Tips for Getting Your Blood Taken” with a small clipart of a syringe.]

 

I think many people struggle with getting their blood drawn whether it’s psychologically or physically. So I’m going to give you my tips on how I make getting my labs down easier, and you too can include your own in the comments!

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  1. Try to hydrate the best you can the night before if you know you have to get labwork. When I was little and had to get remicade infusion I would try to drink two or three bottles of water the night before my infusion to make getting IVs easier. It helps plump up your veins, being dehydrated will make it much harder to get your veins.

2. Try to dress warmly to get your labwork, the heat helps the blood circulate and pumps it up as well. I often try to wear a sweater or jacket, even if it’s already hot outside. And if it’s cold it might be a good idea to invest in reusable heat packs to hold on your arms before getting blood work to help as well.

[Photo image: 6 blood orange colored reusable heat packs called HotSnapz and a photo of my in my Ravenclaw cardigan on the way to labwork today.]

3. Dress comfortably so you are not uncomfortable when getting your labs drawn.

4. Talk to your phlebotomist and be friendly, more often than not they are friendly back which makes a more enjoyable experience as well, it can also help keep you distracted from the needles.

5. If you prefer not to talk, take some headphones so you can listen to music, or hum.

6. If you get labwork a lot, let them know which veins are a no go and which ones are a better stick than the rest.

7. If you are not sure, let the phlebotomist look around, they typically know what veins are the best to use. Although they cannot predict which ones will blow or roll, they do try their hardest to find the nice spongey veins.

8. If they stick you and start to dig for the vein, tell them to just start over. Digging for the vein is far more uncomfortable and painful then just letting them do it again, at least in my opinion anyway.

9. If you get dizzy after labwork, try to take juice with you and let the phlebotomist know that way they can make sure you don’t pass out when you stand back up.

10. If you bleed a lot and easily, ask for an ace wrap rather than a bandaid, it works a lot better at applying pressure.

Also, if you are in a hospital and getting blood drawn through an IV, make sure they clamp the IV well and have a towel or something under your arm to keep blood from getting all over the place. This typically does not happen unless the blood is drawn from an IV.

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[Photo image of a nurse drawing labs from an IV and blood getting all over the sheet of the hospital bed.]

 

And if you have any other tips, leave them in the comments! Good luck with your next set of labs!