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..

ER5-18-14

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?

me

 

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

Dear Newly Diagnosed Self..

Dear 16 year old me,

In 3 days you will be diagnosed with something that will change your world, little girl. You’re going to mature much faster than you expected. Life wanted more out of you at a younger age & this will change you.

I know you just got out of a lengthy, scary, life-threatening ICU stay. I know you had to say goodbye far too early in life to loved ones who won’t ever feel the same about the things that went unsaid during and after that hospital stay.

You’ll need surgeries to improve your quality of life. The recovery may be a bit sensitive in nature and reading how those procedures are done is mortifying. You’ll quickly learn next to nothing is embarrassing to talk about with professionals.

You will lose friends.

You’ll realize you only needed those friends up until a certain point in your life and other new friends will step into your life when you find that you need it most. Don’t be afraid to open up to these friends. They accept you for who you are and they can relate to you on a whole different level because of the types of illness they have.

You’ll find people who love you and some will mistreat you. You will find “love for now” and realize quickly the most important person who loves you.. is you. When things get rough, try to let people in. (You’ll never want visitors at the hospital. This is something you don’t grow out of. And it’s OK to set those boundaries).

When you find love and lose it, you’ll realize you’re so much more and that being sick isn’t WHO you are, but a big part of your life. If someone is willing to walk away during the toughest of times, they don’t deserve your love during your best times. You’ll be stuck in this moment for quite some time, left feeling worthless, broken and unlovable. Don’t. You are worth so much more than you realize. You are more than blood counts and in-patient stays and endless infections. You are worth more than the needles that will be injected into your skin, the MRI machines that make noises louder than you’ve ever heard and definitely worth more than that co-pay that breaks your bank. You’re worth more than $0 in your bank account.

You will feel guilt when you’re unable to do something, but keep speaking up. There will be opportunities that come out of this situation that will make this disease so much easier to live with.

You will feel guilt that’s indescribable when you fail a medication that costs more than a house. Know that every person living with IBD is different and no two stories are the same. Still, hold out hope that one of these medications will place you in Remission. Don’t lose hope.

You’ll lose what you thought may be your career, and turn your life around to find what you wanted all your life is in front of you. Seize the moments you are given opportunities, no matter how conflicted you may feel about sharing parts of your story and yourself. You will learn that giving of yourself is a full-time job and the others are just hours in the day. You’ll dedicate your real career being your most raw, authentic self and you will help people in ways you never thought you could.

Find resources…

Find resources and use them to the best of your ability. You’ll realize quickly when you’re first diagnosed, there is next to nothing to read about your diagnosis. You will be a part of the patient community that will help change this and help eradicate the stigma of talking about bowel disease.

You’ll run your first half-marathon 6 weeks after you have surgery. it won’t be your last, but your journey to do a triathlon will be hindered by many things. Scary things.

You will be challenged with new, scary and serious diagnoses, but it is nothing you will not be able to handle. You will go through more than 15 GI’s before you find 1 very good egg who will be in your corner when things don’t go as planned. You care team will be big, but your hopes in finding Remission are much bigger.

Don’t give up.

Things DO get better. You will love and lose. You will face challenges you don’t deserve. You will fail many medications and spend a lot of your time in waiting rooms. But your voice will be heard. You will be an intricate part of patient-centered care and give vital feedback to your care teams that they take seriously. You will be a part of the change in patient advocacy and realize your potential from a young age and will quickly realize that is something you will never want to give up.

Never settle.

Be persistent.

Love yourself.

Hold on to hope; the best is yet to come.

IMG_0010

Helpful Hints for the Newly Diagnosed

These are some helpful hints that I’ve found based on my experience as a person who was once newly-diagnosed with IBD. They may even be helpful for those who weren’t recently diagnosed!

IMG_0582

Set aside time for insurance paperwork

Each year around the first week of January, I set aside working hours to prepare insurance paperwork and authorizations. Every single year since I was 16, I’ve dealt with specialty pharmacies.

Any patient who just read “specialty pharmacy” probably just cringed a little. It’s time-consuming, there is a LOT of holding and sometimes, you have to re-connect multiple times to get through to the Customer Service representative.

Give yourself enough time to use it efficiently, rather than waste your lunch hour (if you even get one) just to wait on hold.

If you’re able to get these forms printed for each of your scripts that you know will need prior authorizations, especially when changing insurance companies, it’s a good idea to fill out as much as you can. This way, when you switch providers or insurance, you have your paperwork quickly accessible for your appointments when you see your provider.

Invest in a medication journal. And some good pens.

Through the years, I’ve been on a multitude of combinations in drug therapies. It’s sometimes hard to tell which drug may or may not be giving me side effects. When starting a new med, I always keep track of the day I started it, just in case it interferes with other medications. Many specialists will have you keep a symptom journal for efficacy reasons to see if that medication is worth pursuing.

Keep products up to date and keep extras on hand.

When I was diagnosed, I quickly learned what I should and should not take when living with IBD. Aspirins and other things can affect me in many different ways. I keep Benadryl stocked in my cabinet (that’s not expired). I also keep extra vitamin C tablets and teas around the house, in the event of a sudden cold or flu, so I won’t need to go to the store and infect others. Honey for a sore throat & Chloraseptic spray has helped during very random times (after sedation and scopes, after they’ve intubated me).

Consider a pill organizer

It takes a long time for me to gather my meds each week. I’ve tried to plan ahead and set a certain day penciled in my planner to remember to re-stock each of the days in my 7 day pill box. I’ve actually been thinking about investing in another, since it’s a daunting task. I remember when I was diagnosed, within the first two years, I was on over 50 pills a day (in college, nonetheless). Consider getting yourself a two week or month pill organizer so you feel prepared and not stressed out when you go to take your pills and realize you’re empty.

Keep your “safe foods” stocked

Keep frozen bone broth (or vegan broth) stocked. Everyone has their safe foods. When you’re first diagnosed (and even later in your diagnosis, things can change at the drop of a hat what you can and cannot ingest. I prefer to stick to the BRAT plan (Bananas, Rice, Applesauce & Toast), along with a few other “safe foods.”
Having specific safe foods set aside in your cabinet can spare you stress when you need the extra energy.

Let’s be honest, the last thing you want to do when you’re in a flare or have a “normal person sickness” is to have to rush down to the drug store and buy overpriced items that you should have picked up ahead of time.

Because we never know when our next flares will be, all we can do is choose to be well-nourished, well educated & well-prepared!

Stay tuned for part 2!

View the original article here: Helpful Hints for the Newly Diagnosed

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.

IMG_0029

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).

IMG_0066

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.

IMG_0260IMG_0118

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.

IMG_0322

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.

IMG_1738

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.