#ThisIsMyEDS Part 2

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[Image shows three spoons on a laptop keyboard. Overlaid is a clip art of torn white notebook paper with a red paper clip that reads “#This Is My EDS Part 2” with a zebra head. In the bottom left corner is the banner for Thee Crohnie Grace]

Part two of the #ThisIsMyEDS Tag is all about Diagnosis with Ehlers Danlos Syndrome since diagnosis often doesn’t occur until later in life and is under diagnosed since it can cause an array of different problems per person.

1) How Long Did Your Diagnosis Take? When and how were you ultimately diagnosed?  It took 18 years before I was diagnosed. Due to having Crohn’s since I was little, many doctors blamed my problems on Crohn’s and it’s related issues. At one point my GI had put on me Celebrex because he believed I had Juvenile Rheumatoid Arthritis because it is common with Crohn’s. When the joint pain and joint related issues began to get worse they finally sent me to a Rheumatologist who told me I had Ehlers Danlos Syndrome and no arthritis, and after a genetic study it was determined I had the COL5A2 mutation that is linked with Classical Ehlers Danlos.

2) What was your emotional reaction when you were diagnosed? And Now? Honestly it was a huge relief to know it wasn’t all in my head, that I had validation, and relief to just have an answer. Of course then there was a bout of sadness over the lack of treatments and the fear of getting worse. Now I’ve just kind of accepted things and am at peace with my health overall.

3) When did you first start experiencing symptoms? When did you acknowledge them as symptoms? When I was 9 I started getting bad joint pain, around the same time I started Remicade for my Crohn’s disease, I assumed it was just a side effect of medicine and wasn’t until other problems surfaced that I began to suspect something was off.

4) Was there a specific age where your head drastically changed? If so, when was that? My junior year and that summer were when things really started causing problems. I had lost a lot of weight from a bad Crohn’s flare and the weakness and fatigue made the pain even worse, things were subluxating and dislocating more frequently and I started using a cane because I found standing and walking to be incredibly painful and I felt off balance quite frequently because I put all my weight on whichever side hurt the less.

5) What medicines, treatments, and/or devices do you typically need? Do you have access to all your needs? I have access to all my needs really. Medicine wise I rely on pain medication and lots of medication for comorbidities such as gastroparesis and POTS. I have an NJ feeding tube that keeps me nourished and keeps my medicine in my system. Mobility device wise I use a walker on a every day basis and a wheelchair as needed for longer events or things that require a more extensive amount of walking. I also use braces and KT tape on a regular basis due to joints dislocating or subluxating.

[Image shown at the top left shows my thighs and knees sitting in a car, my left leg has a brace and my right leg is taped with pink and purple KT tape. Image shown at the top right shows me sitting in a wheelchair in a cafeteria with my brother standing behind me holding his phone down for me to see while our friend stands to the left looking at his phone. Image at the bottom shows me in my dining room from the thighs up, my hands resting on the handles of my walker, I’m in white shorts and a pink shirt with some planets and text that says “Far Out”]

6) How often do you go to the hospital? How comfortable are you in medical environments?  I go to the hospital for follow ups with specialists and procedures as necessary, I tend to avoid the ER unless it’s for something that can be handled locally (like my kidney stones) because all my main doctors are 4 hours away at Cincinnati so we can usually schedule a direct admit to avoid the hassle of dealing with an ER since they are not usually equipped to deal with chronic issues. Honestly in a hospital I am pretty comfortable now (I used to not be) but I still get very uncomfortable in ERs due to many ERs not knowing how to handle chronic illnesses and such.

7) What kind of resources and support do you use?  My family and friends are really my main support. There’s not many sources around here so I rely on doctors and in depth research when it comes to questions and resources.

 

And that concludes part 2! We are nearing the end of May and there is still one segment left so stay tuned and remember that when the month ends, awareness shouldn’t stop there. Spreading awareness can help by gaining the attention of others, raising money for research which could lead to treatments or resources for EDSers everywhere.

 

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#ThisIsMyEDS Part 1

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[Photo shows three spoons laying on a laptop keyboard, overlaid is clipart of torn white notebook paper with a red paper clip. On the paper in black text reads, “#ThisIsMyEDS Part 1: What EDS Is Like On My Body”. Below the text is a picture of the profile of a zebra head. In the bottom left corner is the blog banner that reads “Thee Crohnie Grace”]

“For EDS Awareness Month I’d like to try and uplift the DIVERSITY of EDS and how it impacts our lives as individuals. EDS manifests itself on a wide spectrum and our symptoms can be fluid as well.” -Annie Segarra

 

You probably know Annie from her Youtube videos where she talks about disability and diversity. Annie also has Ehlers Danlos Syndrome and is an activist when it comes to spreading awareness. Thus came her idea of EDS tag. It includes three separate parts to be released over the month of May (EDS Awareness Month). This is the first part which is mainly a bit of an introduction and just covering some of the basic stuff, so let’s get started. And if you have EDS, feel free to join along and tag in with the hashtag: #ThisIsMyEDS

1. Name, Pronouns and EDS Type: So my name is Grace, my pronouns are she/her or they/them (Gender is a social construct) and I have Classical EDS which was formerly known as Type 2.

2. How Are You Feeling Today? Overall I feel pretty decent, of course I’m also writing this after taking pain medicine and Benadryl haha.

3. Can You Explain EDS in a Sentence? Ehlers Danlos Syndrome is a genetic connective tissue disorder in which the body doesn’t produce enough collagen or produces defective collagen.

4. Whats Your Favorite Analogy for How EDS Feels? OR What EDS is Like? For me it feels like my  joints are like wet spaghetti or like I’m being held together by very old rubber bands that stretch way more than they should and snap very easily.

5. What Are Your Symptoms and Comorbid Illnesses/Conditions? I have chronic pain in my joins, sometimes muscle pain from bruises, hyper mobile joints that frequently subluxate or dislocate, stretchy skin, trouble walking, poor memory and trouble regulating body temperature.  Comorbid illnesses such as POTS, Gastroparesis, Cluster Headaches and Crohn’s Disease.

6. How Does EDS Impact Your Daily Life? Well I have to use a walker or wheelchair now to get around, I’m in physical therapy twice a week, I’m tube fed, I have an ileostomy, I have to take medicine in the morning, afternoon, and night. I’m unable to work, but I am still in college. I very seldom leave my house except to go to college or doctors’ appointments anymore. I am often in too much pain to do much of anything except stuff I can do from bed or from a couch, I’m always exhausted no matter how much sleep I get and have trouble getting to sleep because of pain or here recently because of cluster headaches. It can sometimes do a number on me emotionally because there’s so much I want to do any I’m unable to do it. Such as the fact I didn’t go to my latest LARP event because I was feeling so horrible.

 

This concludes the first part of #ThisIsMyEDS. Part two will be done on the 15th, and part 3 will be done at the end of the month. To learn more about EDS check out The Ehlers Danlos Society.

EDSTag

[Image shows me with strawberry blonde hair without my glasses, my makeup is on and my feeding tube is dangling over my arm. I’m wearing a white halter tank top and wearing a Mjolnir necklace. Along the bottom in black text reads #ZebraStrong and has the face of a forward facing zebra.]

Learning to Accept Your Limitations: PT and College

 

[Image shows three spoons on a laptop background, overlaid is clipart of torn white notebook paper with a red paperclip. On the paper in black text reads, “Learning to Accept Your Limitations: PT and College” and a black disabled logo of the stick figure in a wheelchair. In the bottom left corner is the blog logo]

It has been a while since I have gotten to post because college keeps me extremely busy and I have to ration my energy to high priority things like college, homework, self care, etc. As finals are nearing I have been even busier and struggling with headaches and vomiting a lot more here lately, no real reason except probably a mix of stress and the changes in weather.

I hit a bit of a low point this weekend. Most of the time I am an extremely upbeat and positive person with everything that is going on, but every once in a while it hits me harder and I start to get a bit maudlin. It’s hard to accept my own limitations sometimes. There was so many things I used to be able to do that I no longer can. I have to put my health before things I love far too much it seems. And while I know things could always be worse, they could be better.

This weekend I was supposed to attend my spring LARP event in Maryland, but thanks to a hip dislocation and headaches and nausea I stayed home because I knew I would be miserable. Even if I did have fun, I would suffer from it for twice or thrice as long as the event itself. It was going to rain which meant pushing myself around in the mud and it’s hard enough to navigate rough terrain in a wheelchair when it’s dry, let alone wet. And while I could have taken my walker then I would be in pain from stressing my joints even more after various dislocations the week before. So I stayed home.

At first it was a moment of relief because I knew that I would feel better physically staying home, but emotionally it took more of a toll. A lot of frustration and tears, and watching Moana on repeat for 2 whole days.

I was eagerly awaiting my PT (physical therapy) which was today. I was anxious because not many doctors know or understand Ehlers Danlos Syndrome, so I was afraid of getting a doctor who had no idea what to do, or get a doctor who was unwilling to listen or would push things too fast.

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[Image shows me standing with my walker in khakis and a blue and grey striped shirt, feeding tube not hooked up]

I was happy to find out that my PT knew about EDS, knew not to push the movement but that I needed to do non weight bearing muscle strengthening exercises. She was incredibly nice and funny and talked to me like a friend while we did evaluation of my joint strength and did a few chair practices and had me walk a bit so she could see how I walk so she could better evaluate what braces would work best for me.

She told me to let her know when my pain was too bad and we could stop, but I pushed through because I was a bit excited and it felt so good to know I was making an effort. I often feel like people think I do not make an effort because I use mobility aids and because I’m not up moving all the time. So it felt validating to know that my PT acknowledged my pain and weakness and we worked with that to still get some exercises as well as she encouraged the continue of KT tape because it is good at helping with stability.

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[Image shows my legs covered in KT tape laying across a couch with a white blanket with owls and a green blanket down towards the feet]

We only had a bit of issues with some buckling of knees when she had me walk with the bars which caused a bit of a sharper pain in my right knee and some bruising but overall I was extremely pleased with my first day of PT and she wants me to come back twice a week and she gave me some chair exercises to do at home.

[Image on the left shows me sitting in lavender shorts with my knees with KT tape and then using a belt to do some strengthening exercises from today. Image on the right shows a paper with a fold in the middle, it has little images of people sitting on chairs doing exercises and text explaining those but it’s not very visible]

After PT I went home and ended up taking a nap once I set up my feeds because I started getting a really bad headache. I woke up throwing up so I missed my class of the evening. I did some PT exercises while watching Moana for probably the 100th time (seriously the best movie ever).

Finals coming up have me a bit stressed out so I’m trying to remember to allow myself time to relax, hence this blog post, because if I stress too much I will become overwhelmed, I’ll get sick and it will make the things I stress about even harder. So I have to take a deep breath, remember my limitations, and do what I can in that moment and try not to overwhelm myself by the future. Present day Grace has to take care of Future Grace and the only way she (I) can do that is by remembering self care and to accept my limitations, no matter how hard that may be.

College With a Disability

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[Header shows three spoons on a laptop keyboard with clipart of torn white notebook paper with a red paperclip. On the paper reads “College  With a Disability” and a red symbol of a stick man in a wheelchair. In the bottom left corner is Thee Crohnie Grace blog logo]

College can be hard enough on the average person. It is a strenuous full time job of writing papers, studying, reading the material, re-reading the material, studying some more, and praying that you pass the midterm tests.

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[Image shows notes featuring details about the skeletal system. There’s a blue gel pen and a set of highlighters on top of the paper.]

For people with disabilities or illness, this can be especially hard. Previously on here I discussed the issue of accessibility in college. I discussed how some lecture classes were nothing but stairs, how some class rooms were so cluttered you couldn’t fit through, etc. This semester has made it apparent that there is still more to discuss: absenteeism, testing, pain management and fatigue management while at college.

It is important that regardless of severity of your illness or disability that you know help is offered, though some colleges are more accommodating than others.  Some colleges allow extra test time, or taking the test at a different time alone to make it more accessible, while some colleges have better things to offer such as text-to-speech options, transportation from classes (at larger colleges), and in some cases omitting the 3-absentee rule.

This is why it is important to talk to the disabilities office at your college to see what types of accommodations can be made for you. Of course some will require notes from doctors and proof of diagnosis before you get accommodations, but in some cases simply talking to your advisor or talking to the disabilities office about your concerns for the semester can help them find a way to help you out.

In my case, I have preferential seating (even though in college there’s very rarely assigned seating), but after I had an issue with one professor assigning seats and trying to put me in the top row (of stairs), we talked with disabilities and got it all sorted out. I can take my lab practicals by myself while the teacher switches out the slides for me, because after the first practical we discovered that her testing style was not very accessible. You had to move around the class room, you only had a minute to answer 3 questions per slide, and people were not pushing in their chairs, which makes it a bit hard with a mobility device.

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[Image shows me standing with my walker, I’m wearing jeans and a white t-shirt with sign language spelling out “Bruh” and carrying my backpack over my shoulder hooked up to my feeding tube.]

Some professors can be really accommodating on their own if you talk to them. For the changing of lab practical style for me, I didn’t even have to go through the disabilities office. I simply messaged the professor and explained how it was difficult with up and down movement due to my POTS and that without people pushing in their seats I couldn’t maneuver around to the stations easily.

But the biggest issue is attendance at college, most colleges have a rule that after 3 missed classes, they can simply fail you. While some professors are lenient on this policy, others will dock your grade a letter for every time you miss.  Talk to your professors and the disability office. Sometimes they can make accommodations so that absenteeism isn’t held against you.

Being in college all week can be hard when you also have doctors’ appointments throughout the week almost every week, not to mention surgeries, unplanned ER trips, and not to mention just being too exhausted or in too much pain to make it to class some days.

I think colleges tend to forget this. It is hard to keep up with everything and also keep up with all the college work. I am only taking 4 classes this semester but am still struggling because I also had to have surgery, deal with pain and exhaustion, brain fog from medication, etc.

And then some colleges decide the best way to deal with people struggling in college is to guilt trip them. My college sent out emails to students saying their grades reflected on them, their family, their significant others and could negatively impact the rest of their lives.

This is not the way you deal with students when 1 in 2 Americans now have a chronic condition of some kind whether it be something like Asthma or something more severe like Cystic Fibrosis. Regardless of severity, there is an increase in chronic illnesses and diseases, which means an increase in disability. Which is expected to only increase as the years go on.

With this in mind, you think schools would be more equipped to handle the students out of nearly 133 million people struggling. And while some people can manage their illnesses and have zero interference with college, many struggle with controlling symptoms and side effects of their illnesses.

Perhaps this stems from the fact that the majority of illnesses are invisible illnesses.

“Notably, 26 million persons were considered to have a severe disability; yet, only 7 million persons used a visible device for mobility. Thus, 19 million of the people who were defined as severely disabled, did not use a wheelchair, cane, crutches or walkers. In other words, 73% of Americans with severe disabilities do not use such devices. Therefore, a disability cannot be determined solely on whether or not a person uses visible assistive equipment.” -National Invisible Chronic Illness Awareness Week

So with the facts, why are colleges still lacking a lot of accommodations? I have been thankful that my college has worked so well with me, but I know others who attend my college and have disabilities or illnesses who receive limited to no accommodations or support from professors. I think it’s important to talk about these things in order to see a change.

With statistics showing that chronic illnesses are on the rise and will continue to rise, it’s important for the world to take the steps to make sure everyone has a chance to receive education.

Is your college accommodating to your illness/disability? If not, what would you like to see be changed?

To quote Malala Yousafzai, “Let us remember: One book, one pen, one child, and one teacher can change the world.”

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[Image shows the edge of a laptop and the top of a notebook with a handful of tabs reading things like “Intro”,  “Ch. 2”, “Lang.”, and various other tabs.]

How to Interact with a Wheelchair User

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[Image shows three spoons on a laptop keyboard. Overlaid is torn white notebook paper with a red paper clip. On the paper in black text reads “How to Interact with a Wheelchair User” with a black wheelchair stick man symbol and below that in dark small red text “Thee Crohnie Grace”. In the lower left hand corner includes “Thee Crohnie Grace” blog banner.]

It can be both awkward for the person in the wheelchair and the abled bodied person the first time around. A lot of people don’t know how to act, what to say, what is appropriate and what is inappropriate. The purpose of today’s blog post is to go over basic etiquette on how to interact with someone who is using a wheelchair.

Wheelchair

[Image shows me in a burgundy sweatshirt and black shorts sitting in my wheelchair looking up at an angle, behind me is the living room fireplace and various pictures.]

First and foremost, not everyone who uses a wheelchair is paralyzed. There are many reasons for using a wheelchair: mobility disorders (EDS, Cerebral Palsy, Friedreich Ataxia), fatigue, chronic pain, difficulty standing for long periods of time due to things like Dysautonomia. So never assume that a person is faking or that they do not need their wheelchair simply because you have seen them stand or walk for short distances.

When you meet a person in a wheelchair, just say hi. Don’t insist on knowing why they are in a wheelchair. They do not owe you their entire life’s story. Focus on the person, not on the disability. People who use wheelchairs are people first. Shake their hand if you want.

If the person in the wheelchair is being accompanied by a caretaker, make sure you talk to the person, not their caretaker. Keep in mind that they are present, don’t infantilize them by leaving them out of the conversation or going over them and asking questions they could answer to their caretaker.

Consider accessibility when going places. If you are going out to a restaurant or to a movie, consider where it will be easiest for them to manage to access ramps. If it looks like they might be struggling to get up a ramp (since many ramps are still inaccessible) ask them if they would like help. Never assume they need help, and never try to help without asking. If they don’t accept your help, don’t stress over it, just move on.

On the topic of not trying to help without asking, do NOT touch their wheelchair, lean on their wheelchair, move their wheelchair. Their wheelchair is an extension of their body and is due the same personal space you would give any other person. You would not touch a stranger without permission, so do not touch their wheelchair.

[The image to the left is a selfie shot of over my shoulder, a complete stranger who I do not know their name or who they were is holding onto the hand of my wheelchair.]

The other day I had an instance of a complete stranger holding on to my wheelchair. This is not appropriate. Do not touch people’s wheelchair. That would be the equivalent of a complete stranger coming up and just holding someone’s arm. It’s extremely uncomfortable and just rude.

Another important thing to remember is if a person in a wheelchair has a service dog, do not touch their dog, they are working. This goes for all service animals, do not pet them or distract them from doing their job.

Don’t shy around phrases like “run along” or “going on a walk”. Most of the time we use those same phrases too. Don’t try to be funny and make jokes about using a wheelchair, unless you are a close friend and have been given the okay to joke around. I know many of my friends and I make jokes from time to time in regards to it.

Be respectful at all times, just treat people the way you want to be treated, don’t use a wheelchair accessible bathroom stall if you don’t need it, don’t park in disabled parking without a pass, etc.

Now for some quotes from other wheelchair users: 

“Do not touch and/or mess with my chair without asking. Don’t assume I can’t do things just cause I’m using a wheelchair.” -Nina Marie

“Don’t be afraid to get to my level in anyway. It [makes it] easier by not hurting my next and hugs are way better too.” –Breezy Nichols 

“Don’t assume I need your help, with anything. I will ask if I do.” –Angel Marie Wilson

“Don’t touch/interfere/block/joke about it. Realize that it’s a tool and not who I am. Don’t pity me or tell me you’re sorry for me. I’m not. Offer help, and if it’s politely refused, don’t apologize and just let it go. It’s not about you.” –Chris Shrewsbury

“Don’t talk to me like I can’t understand you because I’m in the chair.” –Mila Shelly

    Being in a wheelchair is not a death sentence. It can give people so much freedom and make life much easier. It is an aid. With my wheelchair I’m able to go to conventions, take photography, go to events and not hurt myself to have a good time. The only thing hard about being a wheelchair user is the way people act and perceive me for using a wheelchair, but by abiding by these simple rules and thinking before you act it can make everyday easier for both parties involved.

[Image to the left shows me in a black and pink dress with various cartoon drawings along the bottom, in a wheelchair. My hair is curled and I have a black cardigan on.    In the photo to the right it is me from yesterday in my wheelchair (not entirely visible minus a bit of a handle behind my shoulder. It is snowing and I am in a dark blue/black jacket with a blue choker on. My feeding tube visible in both photos as well as my thin framed glasses.]

Wheelchairs and My Week

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[Image shows three spoons on a laptop keyboard. Overlaid is torn white notebook paper with a red paper clip. On the paper in black text reads “Wheelchair and My Week” and below is a clipart of the disabled stick figure in a wheelchair logo.]

It’s been a while since my last post, thanks to college keeping me super busy. What time I’m not at college I try to study, or I’m at the doctors, or trying to spend time with friends and family. But since I can’t sleep due to stomach pain and nausea, I figure might as well let everyone know how things have been.

My port is still healing up, I’ve pulled the stitches a couple times by accident trying to carry my backpack or stretching too much while forgetting it was there. I go back to Cinci on Monday, just a follow up. They scheduled me for an MRI but we are not sure if that is going to happen since I really don’t want to have to pull my NJ tube and replace it all in the same day.

This coming weekend I’ll be going to Maryland for the LARP event I go to twice a year. It will be even better now that I have gotten my new wheelchair.

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[Image shows me in a striped dress and black and white cardigan in a wheelchair outside my house.]

I got to take it for the first drive last Friday when I went to go see a band called Dino Drive that plays around town. My friend and boyfriend know the band members so they wanted to go. I figured I would take some pictures of the band and it would allow me to use both hands to take pictures rather than trying to take pictures with one hand on the camera and one trying to balance me on my cane. Not to mention I could take more pictures because I wouldn’t have to worry about fatigue or pain from standing during the show.

Of course, I soon realized just how awkward it was. I don’t remember if I felt awkward when I first started using my cane or not. But I know I was terrified people were going to think I was faking since I could stand up out of the car to get my own wheelchair. Or that they would think I was faking if I crossed my legs.

I began to feel this nervousness inside due to the fact that many people don’t realize all the reasons people use a wheelchair. I felt I had to commit to it once I started, despite the anxiety and nerves. I tried to act confident in order to “fake it til you make it”.

I wanted to be happy, because I was out of the house, my knees didn’t feel so strained like rubber bands about to break, my ankles didn’t ache, and I wasn’t dizzy. I felt better. Except for the butterflies in my stomach.

We went in through the back since the front entrance was just one big stair. Their idea of accessible was anything but. I was determined though to be independent, after all, that’s part of the reason I had gotten the chair was for freedom and mobility. Of course the curb before the ramp seemed to be too much and my friend helped me over it. Though I felt guilty because I could have pulled my wheelchair over the curb myself if I had just stood, even if it caused me pain and discomfort, I was not paralyzed. Except that once again the fear of being judged for being able to walk, even a short distance, I feared would lead to someone assuming I was faking.

Once inside, I mostly texted a friend. Feeling awkward and out of place. My anxiety getting the better of me. I tried to convince myself it was alright. I wasn’t faking my pain, I wasn’t faking being disabled. I just was not disabled in the way most people perceive. And it did not mean I didn’t need the wheelchair.

My friend made me feel better about it though, even suggesting that when I cosplay as Poison Ivy for PopCon that she would help me decorate my chair with ivy and flowers to match the cosplay.

Another one of my friends told me that I shouldn’t be afraid to ask for help because people want to help me 24/7 with things that they can’t help me with. They can’t take away my pain, can’t take away my nausea, can’t make my illnesses go away. But they can help me over a curb or up a ramp. He said, “You are doing them a service by letting them help you.” Which made me feel a little bit better.

I had a 3rd friend say she was going to get glow sticks to put on my chair for the Maryland LARP event to brighten it up and make it fun, and also to help see at night.

I had all these people supporting me and telling me how happy they were for me, and how much wheelchairs had helped them.

But then I had remembered the words my grandma said, “You better not get used to it, because I’m not going to see you in that all the time.” To my father insisting I didn’t need a wheelchair for vacation and so I pushed through. I thought of all the people who saw me in a wheelchair as giving up. I do not give up.

If I had given up, I wouldn’t be here right now. I would have thrown down the towel 10 years ago and said I’m done, no more surgeries, no more medicine, just let me die. But here I am, fighting to make my life the best it can be, because I DO NOT GIVE UP.

If I set out to achieve something, you bet your buns I’m going to do it. I’m the girl who will push through post-op pain and tonsillitis to make it to college for the week because I can’t miss my classes and test.

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[Image of me laying on the couch in a tank top from the chest up, you can see my port incision, I am exhausted and have a worn out expression on my face.]

I am the girl who dislocates an ankle in the middle of her art class, hobbles down to the nurses hall, gets ice and wraps it and then goes right back to class. I am the girl who puts down my own feeding tubes, who’s intestines are on the outside of me, who has endured countless situations where I thought I couldn’t handle it anymore, I thought I was done, but I didn’t.

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[Image of my foot in art class propped up on my leg wrapped up with an ace bandage and holding an ice pack on it.]

Using a wheelchair isn’t giving up, it’s me pushing myself through the pain to enjoy life. So I can go to the concerts, so I can go to events, so I do not have to be miserable and in pain to enjoy the little things. Having an NJ tube is not giving up, it gives me the nutrition I need to push myself. Having my ileostomy is not giving up, it’s given me freedom from being stuck in bathrooms and having to have countless fistula surgeries.

If you think I’ve given up, you are wrong. I’ve only just begun to live.

“How Can You Rate Your Pain on a Scale of 0 to 10, if You Don’t Remember What Zero Feels Like?”

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[Image shows three spoons laying on a laptop keyboard. Overlaid is a clip art of a piece of torn notebook paper with a red paper clip. On the paper is a clipart purple awareness ribbon and a quote that reads “How Can You Rate Your Pain on a Scale of 0 to 10 if You Don’t Remember What 0 Feels Like”.]

When you are in a hospital they often come in and ask you, “How would you rate your pain on a scale of 0 to 10?” and if you are used to chronic pain, you know the struggle.

Depends on where.. and the time.. and what you were doing. My knees may be a 5, my stomach may be a 4, my head might be only a one or two. But I am constantly in pain. Not enough that I will demand pain meds. Unless my pain has me in tears, I often will take something light or just deal with it. So when they come in and ask me “Are you in any pain?” I tend to take that to mean, “Are you in any pain that you aren’t used to.”

And of course my pain scale is different from most. The pain scale they use at most hospitals start at 0 with no pain, then 1-3 with mild pain, 4-6 with moderate to severe pain, 7-9 with very severe and then 10 with worst pain possible. Living with chronic pain though has dulled my senses a bit to pain. Hence why I can sit and get a tattoo, or tolerate most pain without a whimper until a 8-10.

Most of the time my pain is mild to moderate. I live at a constant 3-5. Mild being that the pain is nagging or throbbing but I can push through and do what I need to or want to do with help. My cane provides relief from my knees that would push that 5 to a 6 or 7. Other times the pain becomes more moderate and interferes significantly with my day to day activities and hobbies. I can still push through, but if I do I will regret it.

When my pain reaches a 7, it becomes disabling to me, I need to sit down, I might curl up in a ball. Anything higher than that and I may not be able to verbally respond or I may become hysterical from the pain depending on the type of pain.

But what is my 1-10 scale, would likely be a 1-14 pain scale for someone who doesn’t deal with pain on a regular basis. What is my 10 might be a 14 for someone else. I could be experiencing a 9 on my pain scale, and still be conscious and able to respond. I walked around with a dislocated hip for a week before going to a rheumatologist and getting it fixed. He was surprised I hadn’t been unable to walk or in a great amount of pain, but due to my high pain tolerance, I had no idea until he mentioned it and then I was like, “Oh yeah, that has been hurting.”

The other thing is that with multiple chronic illnesses, my pain is wide spread. So as I mentioned before I could have different levels of pain at different locations. I once read a thing about how chronic illnesses are like a house being on fire. You often focus on the biggest fire or the the most troubling fire and forget about the smaller fires. So I often forget about some of the pain when other pains arrive. When I got kidney stones that pain took over and I forgot all about the other pain, or when I woke up from my port surgery with no pain control, but on a regular basis I juggle between joint pains, stomach pains, sore throat, and gut pain.

This is why it is hard sometimes when doctors walk in and want to know where my pain is. Unless they want a 600 word explanation, it is much easier just to say “I’m fine.” if I can tolerate it.