Becoming Visible: My Life with ‘Invisible Illness’

I am a face of “Invisible Illness”. I want to show you what one symptom of living with an “invisible” me is like, in hopes others struggling with illness, disease & the purgatory of Undiagnosis know “I see you” to give others insight what my invisible illness looks like. So let me take off my mask..

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I live with multiple Autoimmune diseases; often referred to “Invisible Illnesses” because these diseases cannot be seen to the naked eye. Because of this, many who are diagnosed with Autoimmune diseases, like Crohn’s Disease or ulcerative colitis, are not taken seriously because physically looking at me, you cannot see the physical toll the internal destruction and irreversible damage.
My invisible illness means taking upwards of 20 pills a day. Some of these medications include daily or daily injections, monthly infusions, etc. Some are so harmful, they016aa680ca304250b0560f8f52076eb0ac84a29bef must be identified as “black box” medications. This means death is a possibility and has been reported as the cause of death in some patients. I don’t say this to scare anyone, but medications for chronic illness can be huge decisions that can greatly impact your quality of life, not to mention your finances, social life, holiday celebrations & major milestones in your family’s life. it doesn’t show the anxiety of knowing some weeks I’ve had to make the choice of being able to afford groceries or medications. It doesn’t show the hundreds of denials from insurance companies, stacks of appeals my doctors and I have fought endlessly for & the major disappointment of never getting the medications I need in order to be able to save an organ. It doesn’t show you the thousands of prescriptions I’ve taken since age 15. It doesn’t show the guilt of failing multiple medications & never knowing when a drug that will work for you shows up. It doesn’t show the guilt, missing out on amazing opportunities & chances to achieve my goals. 

My invisible illness is located in nearly every organ: skin, small bowel, large & small intestine, rectum, esophagus, sympathetic nervous system, musculoskeletal system, deteriorating bones due to long-term steroid use & joints that begin to fuse together. You cannot see the obstructions in my intestine, the ulcers in my esophagus, the number of times I’ve thrown up, nor time spent on the bathroom floor writhing in pain. You can’t see the amounts of blood in my stool that makes me so anemic I’ve required blood transfusion. What others can’t see is an infection in my intestinal tract, the long-term side effects of small doses of chemotherapy injected weekly and monthly infusions. Invisible illness is blood clots, respiratory infections, sepsis, pancreatitis, exploratory surgeries, fusing of bones, inflammation of eyes, ulcers in the nose and mouth, insomnia, osteoporosis. it causes cancers, changes in weight, my skin, my hair & my self-esteem. It doesn’t show tubes, PICC lines, NG tubes or preps for surgery. It doesn’t show anxiety, withdrawal from friends or the lasting effects of PTSD many patients experience after traumatic & near-death experiences.

It doesn’t show the self-esteem Iose every time I look in the mirror and don’t recognize the reflection, wondering where the “old me” went and what, if anything, I can do to get her back. There are times my illness becomes visible. My eyes sink in, I’m visibly tired, swimsuvery pale. Sometimes I’m thin, making it more apparent. Rude, uninvited comments like “you look much healthier than before”, only to be left thinking “was I that fat before??”

20140213-191351.jpgIt doesn’t show the friendships I’ve lost because I’ve had to back out of plans, fun events and celebrations. It doesn’t show how hard it is to maintain a relationship with someone; the fatigue, the guilt of not feeling well enough to care for myself and the guilt knowing they may have to care for me,. Caregiver/Family tip: They may not always know what to say or how to offer help, but even offering to come over, sit with they & just stay awhile speaks volumes. A little help gives a lot of hope. Pain is incredibly lonely.5047f22d-b48b-41e5-863d-3b404bb8b64e

Despite my invisible illness, I’ve mustered strength to run a couple 1/2 marathons, educate myself & become an advocate for others. This past year, I was asked to be an Ambassador for an organization I have such great respect for. For nearly 4 years, I have been using the Charity Miles app, which donates to the Crohn’s & Colitis Foundation of America. It’s extremely rewarding to be well enough to train for endurance events, especially while training and fundraising for Team Challenge events.

Recently, I needed emergency care for my arthritis, so at 2am, I called the on-call Emergency Rheumatologist. I explained my situation and was brushed off and told to “just get through tonight”. I hung up the phone and sobbed. I felt completely invisible.you see, invisible illness isn’t just just brushed under the rug by common folk, it’s also invisible to some of our specialists – who challenge us & presume our pain “cannot be that bad”. You may be able to see my glassy, inflamed eyes with bags underneath them, but no one knows the struggle my insides are putting me through. Your own doctors & nurses do n’t understand the excruciating pain of what it means to be a patient living with autoimmune disease, trapped inside a body in which your cells attack your entire body. the cells meant to protect you communicate with one another fight each other instead. if we can’t get providers to understand the seriousness of our pain, who will?

01e658b86c12aad902753f3b75349acfe021bf17b9I struggle mentally, like many other autoimmune patients, with putting any biologic into my body. I’m weak, foggy & often sore and sick the next day. ask yourself: How would you
plan my week around which day I would inject? Would you do Fridays so you could rest/recuperate over the weekend?  would you inject Mondays so that by the time the weekend came you would be able to enjoy it?.. As someone living with an illness that seems obvious only to start to cycle over right away on Monday? Quite a perspective, isn’t it?

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What it shows is my strength, despite the odds I’ve dealt with, the redirection I’ve taken in stride & the pride I feel overcoming each flare I experience. Illness changes you. When we explain to others what it’s like to live with invisible illness we often say that our insides don’t match our outsides. We share our stories in hopes that our future will include more support & give others courage to tell someone “I’m struggling too “. Sometimes we just need people to simply be there, not analyzing our every move, not picking us apart because they don’t perceive our illness to be the level of “disability” which people won’t mock us for parking in the handicap zone, for using “the perks” of Disability Services on campuses, missing work to “sleep all day” or “catch up on talk shows”. We need you just to be here. Just be with us, even in silence, to just feel.. Visible.

XOXO,
jojo

The Things I Haven’t Said

I’m choosing to write this today because I feel like it’s time to be brutally honest with my followers, which include my friends, family, coworkers and many other bloggers I’ve had the privilege of meeting, collaborating with and becoming very close with. During tough times, especially in the past year, other members of the IBD community have been the only people I tend to accept support from because they are honestly the only ones that have truly been where I’m walking right now. And where I’m walking right now is on glass.

I want to start out by saying, I’m sure many of you have noticed over the last several years of my blogging, whether it’s on this WordPress site or on my public facebook page, I don’t tend to share a lot of details about MY personal health. This has been for many reasons, but the main one is my privacy and how I choose to cope.

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I’ve chosen today to go into depth about some of the health issues I am and have been dealing with because there comes a certain point when you struggle so much that hopefully by putting yourself out there for someone else, they feel less lonely in what they are going through. I was that kid at 16 & in many ways, because of the lack of education about my main diagnosis of Crohn’s Disease, I feel like I still am that kid today, just trying to catch up, just trying to tread above water.

I have had many cases of “what the hell is going on with my body” in the last 3 years to count – and a LOT of scary medical situations that could have taken a very serious turn. At the age of 27-28, I finally decided to get checked out for what I’m told is a neurodegenerative disorder. Honestly, 2 years later, I still don’t have a lot of answers as to why I’m unable to walk at certain times, my motor skills completely fail me and I have episodes where I am fully incapable of getting out of bed. When I started having bladder incontinence, excruciating pain in my hips and back, I got scared.

Mind you, while this was all going on, I was being tested and diagnosed with what we now know as Hemiplegic Migraines. I write about them here, if you didn’t know. But while I was struggling with the onset of the migraines, that present looking like strokes/seizures, take away your inability to talk and use one side of your body, I was also hiding this from all the people around me. My coworkers, everyone. These episodes became extremely frequent and didn’t seem to be slowing down. Since I’ve been on anti-seizure meds and many other preventative/abortive therapies including botched Botox and nerve blocks, I rarely have serious complications with them. I’m lucky that they are somewhat controlled, but I do get 1-2 serious ones a month and my surroundings are affected for a couple hours to a couple days, mostly with brain fog and aphasia (lack of finding words and getting them out correctly).

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This was one of the most terrifying periods in my life, as these episodes in my body seemed to be taking over full control of my body. I would lose complete control over my incontinence and symptoms began to creep up that all added up to something degenerative. I was tested for ALS, MS, MG, MGUS, Parkinson’s & Multiple Myeloma. You name it, it was brought up and seriously discussed with me. Months and months of testing, waiting.. & still, I do struggle. One thing I cannot confidently say is that I have answers as to why I have episodes of being absolutely paralyzed, but I can say that with time, they have lessened. All I’ve been told by my neurology team is that my condition is likely degenerative and that it “will take time to process and diagnose within the next few years”. Reassuring. In the last 2 years, I’ve discovered that flying and travel have a huge part to do with these episodes, so I get extremely nervous when I travel – to the point where I’ve given friends keys to my room to help get me out of bed.

I’ve also struggled with old complications that keep popping up – regarding cysts and pain from an endometriosis diagnosis I got around the time of my IBD Dx. I guess I was ignorant in thinking that would go away. Most recently, I received a new and tough diagnosis of AVN, avascular necrosis of my left hip, which has been giving me a lot of issues. To say that was unexpected is to put it lightly. I have continued to make more room on my diagnosis plate, but I guess once it fills up, you can’t just set it aside like a buffet plate. Instead, I’ve found myself juggling multiple plates, and only dealing with the scoops that I absolutely need to at this very moment.

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On to more current things.

Within the past year, I’ve been through things I never thought I would: I lost my job, I lost my health insurance (twice) & went unmedicated during the most stressful and physically difficult part of my life. I suddenly, a week before my 30th birthday, felt like I completely lost my identity and I had no idea if there were even pieces to pick up from the life that had just completely torn my heart into pieces.

In so many ways, the irony comes full circle when I think about it – I began college, fresh with a rotten diagnosis I knew nothing about. I declared that English and Writing would be my major. But within 6 months of being on campus and being in and out of the hospital, I knew I needed to change my major in order to receive good health insurance (so much irony now in 2018, as this was in 2005). I made the decision to get into the Health/Medical field and go for a 5 year program to be a Health Care Administrator with  Business degree as well. When I lost my job last year, I had NO idea what to do.. until I was offered a freelance position with a company I am currently writing for and feel very honored to be a part of their staff team. The irony, right? I left my Plan A, to get insurance for Plan B (IBD) and in the end, I couldn’t hold down a full-time job and I’m not even using that degree. So really, it looks like Plan C was there all along and I had no idea. On my hardest days, the most fatigued and pain-filled days, I try to remember that everything that I’ve done with my life has been for good reason and that this loss of my “old” self has made me gain so much more of my “new” self. Of course, it’s taken a LOT of time for me to heal and accept that I can’t work full-time (for right now) and maybe that is just not in the works for me. Right now, my full-time job is to make sure I’m taking care of all of the things that I need to do for myself, which include a lot of specialists, follow up and a lot of time spent in waiting rooms that look like this.

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I still feel incomplete, less than and disappointing to others, especially family who have always had very full-time jobs. I struggle making it out of bed in the morning and it takes hours for me to actually feel like a real human being. People who don’t struggle with illness will read that and make a lot of assumptions: “must be nice not to work full-time”, must be nice to work from home, must be nice to have those options.” If I had the option to live a pain-free life, my friends, I would. There is nothing you can say to me to get me to say otherwise. I live every day in chronic pain that most people will never have to understand, but along with this comes an unexpected side effect – from others. Being misunderstood, having the stigma that I’m lazy, depressed or just simply don’t want to do things. Since I left my full-time employment, there was a time I was juggling 4 part-time jobs at once. I continue to spread myself thin, though I’m sure those around me don’t feel like I do as much as I could and that makes a person feel like they’re being kicked when they’re down. If purgatory lived in a home, right now it’s mine.

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I’m kicking myself for wanting to give Stelara such a chance last year at this time, having to wait 8 months to get approved… when I know in my gut now, I probably just should have had my major resection at that point. Would I be here right now? I don’t know. Would I have a lot less feet of intestine? Yes, very likely. But stubborn as I am, I didn’t want to give up getting approved for the drug that would save nearly 20 feet of intestine for me if I didn’t need to give it up. Every. Single. Day. lately… I wish I could take that decision back.

For good measure, I had to take a nap at this point of the article, because as long as it is for you to read it, it takes a hell of a lot of brain power I don’t today & I’ve already got a 1000 steps in running to the bathroom this morning. I’ve already taken several breaks to try and write this without having to run up to the bathroom & it’s just not happening.

My New Norm

So these days, what else have I been up to? Mostly, right now, trying to get through day by day. I’m still serving my local community at a homeless shelter and really enjoy doing something for the better of others. Working in a community of people who need help so desperately has given me another way to serve people and form bonds with people in really tough situations has made me feel like my home life is a bit more stable than it could be. Really, it gives me perspective, but I am also extremely run down, exhausted and just plain worn down. You can’t pour from an empty cup, and right now… I’m waiting for my refill to come in the form of Stelara.

How to Support a Loved One With Chronic Illness

There are a lot of questions people ask when I tell them I’m flaring. Most of the questions are about how people can help, what they can bring over and when to come around, if at all.

Here are a few ideas on how to help a loved one in a flare

Bring over flowers. A lot of times, when an IBD patient is in a flare, they can’t consume much food. Rather than insulting (we know you mean well, but it’s hard to hear offers of food) someone by offering food they can’t eat, bring over flowers to brighten up their environment.

Purchase an iTunes gift card. This is something that can be sent electronically so that if your loved one isn’t up for visitors, it’s easy to get to them. Sometimes when we’re in the hospital or confined to a bed, our mobility is far from what we want it to be. It’s nice to have a distraction – like a new app or a new song to help get our minds off what is going on in our bodies.

Living with them? Bring them warm blankets from the dryer. Is there anything greater than cuddling up to a warm blanket when you don’t feel well? Well, maybe puppies. But in case you don’t have a supply of rescue puppies, warm up some blankets in the dryer. If you really want to go the distance, warm up a few towels for when your loved one gets out of the shower. Speaking of blankets, a great investment for someone like an IBD patient is a heating blanket or a weighted blanket. Weighted blankets can feel like a body hug and heated blankets

Ask them what types of fragrances they enjoy. Maybe there is a candle or a fragrance that makes them feel at home. Vanilla helps me calm down, as well as lavender. And keeping a freshened up home when you’re back and forth to the bathroom can be a positive for any patient.

Ask them if you can come over and clean for them. Some areas might be off limits, like the bathroom or their bedroom. But speaking from experience, it helps someone cope so much better when their environment is clean and sterile. Clean physical space helps for a clean, healthy mental space.

Don’t know which to pick? You can purchase Amazon.com gift cards online and send them right to your loved ones in an email so they can get the supplies they need from the comfort of their own home. I’ve also previously written about online grocery delivery service that might be helpful to send gift certificates as well too! I have used Shipt for a few months when I’ve been ill and unable to get out or didn’t want to be contaminated with germs during flu season.

However you decide to support your loved one with IBD, know that it will be appreciated.

We may not say yes to all these things all the time or want visitors, but please know it’s for our own mental health space and sometimes people each cope differently

Read the full article here at CrohnsDisease.com: How to Support a Loved One With Chronic Illness

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Not All Holidays Are Created Equal

For many people, holidays are a point of struggle. Memories, sometimes even flashbacks of hospital visits, can linger, blocking good holiday cheer. We sometimes fear that we may land in the hospital again for yet another holiday. This tends to be the case for many people dealing with flares around the holiday and it’s not easy to manage while in the spotlight socializing at holiday get-togethers. In fact, the stress of even getting there can be a big trigger.

Just getting dressed to go to a party can be stressful and emotional.

When you’re pulling up your dress pants or putting on your Sunday or Christmas/Holiday best, things might take an ugly turn. You may realize that you’re clothes have suddenly become parachutes that show off your worst assets. Then there are a few of us who put on our favorite dresses and realize that due to the steroids we’ve been on long-term, “snug” is a word that no longer applies. It can be detrimental to your self-esteem and mental health and it can completely take you by surprise.

Preparing food can be difficult, but sitting down to eat while others feast on things you cannot touch can be even more painful. It can be hard sometimes to control your urge to grab “just a small bite” knowing that you will most likely severely pay for it later. And sometimes, there comes a point where we just want to live in the moment and we will take that bite with the chance.

Small talk can be difficult for those living with any type of chronic illness, too.

Especially for those whose lives are consumed by the illness. When it comes to small talk, you might think “no one wants to hear about how sick I actually am or how my last hospital visit went.” So many times, we remain quiet, uncomfortable and count down the hours and minutes until we can go home, hop in our PJ’s, pull out our flare foods and binge on some Netflix.

Don’t be offended.

We go, despite all of these concerns, anxieties and fears… because we love you. And we need your support. So please, don’t be offended.

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Throwback picture of Halloween – a holiday every IBD-er can enjoy 🙂

 

Read the FULL article here: https://crohnsdisease.com/living/not-all-holidays-are-created-equal/