sunset over the beach

Getting Through the Nights When It Hits Me That My Illness Won't Get Better

I sit on the cold bathroom floor writing this. I am left with only my computer as I throw up repeatedly while listening to “Flares” by The Script. Tonight, right now, it is all real. My pain is real, my illness is real, the loneliness consumes me. I sit here without real means of communication, becoming lost in my thoughts and the music until I finally throw up again, further clearing my body of nutrition and pain medication. I wonder to myself if this is the celiac disease, too much sun, POTS, or something Ehlers-Danlos-syndrome-related. Whatever it is, it is not pretty. My tears are staining my dress as I lie here sobbing, and the only thing I know how to do is write (and throw up).

The truth is that in this moment I feel hopeless. This is as close to rock bottom as I tend to get these days, but trust me it is scary. In this moment the pain, the nausea, and the fatigue are all-consuming. I think I will never achieve the goals I set for myself years ago, I will never get better, I will never live a normal life. On these nights it hits me. It hits me that my situation will never change, and I will never get better. On these nights I become hopeless and alone.

At a certain point during my pity party, though, my attitude changes. I realize that I cannot control what is. I cannot stop my conditions from making me miserable. What I can change is what could be; I can change my future. I find realistic goals for my future, I find a good support system, and I keep pushing on as an advocate for my conditions. On these nights I realize that there is so much beauty in the world. I see it on the nights when I drive down the basically empty highway. I see it when my plane touched down in Mexico. I see it when my little brother hugs me and tells me he loves me. There may not be beauty in my current situation, but there will always be beauty around me, and I have learned to accept that.

I cannot change what illness is standing right in front of me, but I can take in the beauty surrounding me despite my situation. These moments are what get me through my bad nights.

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Doctor listening to patients chest with stethoscope in his office at the hospital

5 Survival Tips for Dealing With Doctor's Appointments

I know you don’t want to read a guide about dealing with doctors and the million-and-one appointments you have to schedule, but alas, sometimes you just need a little advice. Know that you are not alone. We all hate dealing with doctor’s appointments, scheduling them, remembering them, and then of course, we all dread going. To keep it simple, here are some of the tips I use:

1. Organization Is Your Friend

I add all of my doctors’ information to my contact list, including name, specialty, address, phone number, and email address. I also add all of my appointments to my calendar app on my phone. When I do this, I usually include the name of the doctor, address, phone number, date, time, and email address, and I always set a reminder; sometimes, if I have a ton of appointments, I send additional email reminders to myself. This helps me keep my appointments in order; plus, I can easily reach my doctor at any point, because their information is stored on my phone and in the appointment slot.

2. All at Once

If I can, I try to schedule all of my appointment in one day. I hate how much time I have to spend in some of these appointments, so I try my hardest to get everything done quickly and efficiently.

3. Specialist First

When making appointments to see any specialist, I make sure I always take the first appointment available. This means that if they open at 6 a.m, I make sure to schedule my appointment at 6 a.m. In my opinion, it’s the best slot in the book. As long as my doctor arrives on time, I don’t have to wait; plus, I usually get a few extra minutes with my specialist to ask my laundry list of questions.

4. Therapy Last

I live by this rule. I always book the last appointment of the day to be my massage therapist or acupuncturist. I do this because once I am done with my therapy, I get to go home and reap the benefits by lying in my bed and relaxing. Trust me. It’s pretty amazing.

5. Go Digital

Prior to moving to Nigeria, I had Kaiser Permanente insurance and it was amazing because they have this online portal where I could email my doctor, request a call back, refill my meds and have them delivered to my home; basically, it was a dream come true. I highly recommend selecting a doctor that lets you email them. It is so efficient and easy to just send a quick message to your doctor with any question you might have. Also, if you can get your pharmacy to deliver medications to your home or work address, it will save you time and it will be one less reminder you have to add to your phone.

5. Nurse Practitioners or Physician Assistants Can Be Solid Options

When my issues are not urgent, I book appointments with the NP or the PA. It usually ensures that I get to speak to someone that same week and I don’t have to wait for an eternity for my doctor to have time to see me.

6. Photograph Everything

I take pictures of my medication bottles, referrals, and prescriptions. This helps me keep track of everything and I can always pull it up when I need to show one of my doctors. Simplicity at its finest!

OK, those are my tips. Do you have any additional tips you would recommend? Comment below and let me know. I am always looking for shortcuts to dealing with doctors.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

This post was originally published on The Curvy Spine.

group of people sitting on chairs in a circle outside

5 Reasons Why I'm Finally Returning to an Ostomy Support Group

This past Sunday I attended my first ostomy support group with the Metro Maryland Ostomy Association. The bar was set low going into it. In the past I have gone to other support groups and have been tremendously disappointed. I didn’t feel like they were run by volunteers who were suited to lead such a group and the time was spent letting everyone go around the circle and tell their sob story. I know this can be helpful to some people, but it is not what I needed. I found that there was nothing productive or informative about the sessions. But this past Sunday’s meeting was pleasantly surprising, and here is why:

1. I was the youngest person in the room by 30 to 40 years.

I was given a heads up by my ostomy nurse before going that many young ostomates are turned off and never return, because when they get there they realize they have walked into a room of their grandparents’ peers. I went into it knowing this would be the case and was happy to be greeted by very friendly people. I stood out like a sore thumb but people came up to me and introduced themselves. Many of the people there have had ostomies for much longer than me. I find this a plus and will continue to look to them for guidance and inspiration. I do have hope that if I continue to go I will catch new young ostomates and will convince them to keep coming back. My long-term goal would be to recruit enough young people to start our own group.

2. The session was professional and organized.

Beyond standing up and quickly introducing myself to the well-attended group of about 30 people, there was no sob fest. The meeting was kicked off by one of the board members (they have a board!) and they introduced the speaker for the day. This week they had a representative from a company that manufactures ostomy products in Germany. These products are brand new to the American market. We got to learn about their products, ask questions and sign up for free samples. My impression is that for every session they either have a professional speaker or they break out into small groups based on the type of ostomy you have, and you can talk with an ostomy nurse and ask each other questions.

3. They have a WOCN (Wound, Ostomy and Continence Nurse) there at your disposal.

I have only been able to see my ostomy nurse when I have follow-up appointments with my surgeon. These appointments are about to end (I only have one more…knock on wood) and I’m not sure I’ll be schlepping out to Baltimore to see her again. While she is very responsive to my questions over email and phone, I get more from face-to-face interactions. At every meeting this group has a certified ostomy nurse. I got in line to talk to her at the end of the speech and was able to ask her my questions. She is a retired nurse and has many years of experience. I found her to be very knowledgeable, approachable and helpful. Too bad she doesn’t do private consults in DC.

4. They have a sample table in the back filled with supplies.

I think my free sample radar noticed this table before anything else when I walked into the room. It was in the back and covered in all the various ostomy supplies you might need. Turns out it’s there for the taking! When I spoke to the nurse and asked her my questions she pointed out specific products on the table I should take home and try. Before I left I went to get a close-up examination of what was there. I took a couple adhesive remover wipes and skin prep wipes out of the boxes and put them in my purse along with an entire bottle of stomahesive powder. This elderly man came up to me and asked why I took so few. I told him I wanted to make sure other people got to take some home. He looked me straight in the eye and with a very serious tone said, “If you see something you like, take it!” He then proceeded to take the two boxes that were basically full and shove them into my hands. I walked out of there with about $90 worth of supplies my insurance doesn’t cover but I actually need. Thank you sir for looking out for me!

5. I was in a room with other ostomates.

I found it refreshing to walk into the room and know everyone had an ostomy like me. Being in their presence made everything feel normal for two hours.

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Image via Thinkstock.

What a Dolly Parton Concert Taught Me About Living With Chronic Illness

“You’ll feel better after seeing Dolly Parton. I promise.” These words from a friend were the deciding factor in spending some birthday money on an inexpensive ticket to one of Dolly Parton’s recent concerts. As I rode the escalator to the upper section of the theater, with my germ mask on and anxiety flickering through my brain from the overwhelming noise and motion of the crowd, I had my doubts about that.

I’ve never been a country music fan at all, but Dolly is Dolly. Like many people, I grew up hearing her music and I watched some of her films as a kid in the ’80s. As an adult, I’ve really admired her Imagination Library reading program for children, as well as her assertiveness and creativity. This article isn’t a concert review, but in case you’re wondering: her voice was beautiful and clear as a bell, she played multiple instruments and spun wonderful stories about her life and family and by the end of the show I had a huge smile on my face.

And in the middle of the concert she did something that stunned me: she sat down.

True to form, she didn’t have any old chair; she had a charming little porch set that magically appeared onstage. I was too far away to see if it was bedazzled, but I wouldn’t have been surprised. She sat on that porch and captivated the audience as she sang some of her most beloved numbers, including “Coat of Many Colors.”

Dolly sat down a few more times during the concert. Each new seating area was stylish and integrated seamlessly into the set. She was slightly under the weather, and told the audience she was sorry she had to use a tissue onstage. However, she never apologized for sitting down, and that was important. When she wanted to sit, she damn well did so, in all her rhinestoned glory, and held court from that porch or church pew.

As silly as it might seem, this was a huge thing for me. I have a very different life than Dolly Parton, but I’m in a world that wants me to stand…and doesn’t always understand when I can’t.

I’ve been dealing with this issue since I was in my early 20s. At first it was intermittent and due to orthopedic problems and injuries. However, I always eventually recovered, more or less. I worked at jobs where I had to do a fair amount of standing and spend a lot of time going up and down long flights of stairs. At some point, though, as my various genetic and autoimmune conditions began to truly take hold and my joints wore down more, I stopped bouncing back. I had to stop going to standing-room only events and noticed I was looking for seats more often.

It eventually interfered with work. A few years before I fell seriously ill, we had a meeting for professional development at my workplace. Unfortunately, we were standing for the entire discussion. After a little while I began to really hurt, so I took a seat on a nearby bench, where I was still close enough to hear what was being said. I’d only been down for a few minutes when one of my managers quietly ordered me to stand up again. Not wanting to argue in the middle of the lecture, in front of my colleagues, I complied. By the end of the half-hour presentation my hips and knees had locked and I was in absolute agony. The next day I spoke to HR, and was finally granted permission to sit down when I needed to do so.

Nowadays I begin to hurt after a few minutes of standing, and I really can’t do more than 10 or 15 minutes without severe pain. On a bad day, it’s much less than that. I have to keep shifting my weight from one foot to the other to try to minimize the pain, too. When I sit down, I constantly fidget and sometimes need to stand up again for a second to keep my hips and knees from locking, like a human Jack-in-the-Box. I still try to exercise and dance every now and again – for some reason, motion doesn’t hurt exactly the same way standing does – but it’s far less often and less intense than before, due to the pain and exhaustion left in its wake. My previous life, in which I walked a 5K six days a week, did flying trapeze and could dance for hours, is long gone.

Not everyone understands this, because society is all about standing right now. In an article for NPR, writer Angus Chen noted one of the recent catchphrases: “sitting is the new smoking.” Standing desks are promoted as a way to keep fit in the office, and there have been many media articles about how sitting will supposedly kill us. Nobody wants to be known as a couch potato. We’re supposed to be up and on our feet, and if we don’t “look sick” or as though we need that seat, we’re sometimes shamed if we sit down.

I know I’ve irritated some of my friends when I’ve tried to explain I can no longer do standing room-only events. People have raised their eyebrows when, in lieu of another place to sit, I’ve plunked myself down on the floor or leaned against walls. I’ve heard anecdote after anecdote about other people with disabilities or chronic illnesses who have been on the receiving end of nasty remarks or comments when they’ve needed to sit down or use a wheelchair or scooter.

Several years ago, before I became ill, a relative who also has some chronic health issues came to visit me. She knew she would not be able to walk around and stand in lines at my favorite theme park, so we rented an ECV (electric convenience vehicle, or scooter) for her. She was worried about people’s reactions to it. And I wanted to tell her that her worry was misplaced, except for the fact that I’d overheard snide remarks about ECV users from other guests at that very theme park. Luckily, most of the people with whom we interacted were lovely. Still, the fact that she would even need to worry about people’s reactions to using an ECV – and that it was almost enough to deter her from going to the theme park at all – really bothered me.

It shouldn’t be so hard. If you need to sit, for whatever reason, you should be able to do so without worrying. Nobody should be subjected to irritation, insults, anger or derision for taking care of themselves and doing what they need to do.

The next time anyone gives me drama about sitting down or bowing out of a standing room-only event, I’m just going to remember Dolly. What would Dolly do? She’d probably smile graciously, keep singing her heart out in all her rhinestoned finery and completely ignore those criticisms. You do what you need to do to look after yourself. That’s something I constantly tell myself, and Dolly helped remind me of it.

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Texts People With Chronic Illness Would Love to Get From Their Partners

People with chronic illness share what they’d like their partners to text them to encourage them.

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Close up rear view shot of woman looking at sunset with words 17 mistakes people have made when they became chronically ill

17 Mistakes People Have Made When They Became Chronically Ill

When you first start experiencing symptoms of an illness, or when you first get a diagnosis, the learning process officially begins. There’s no handbook for living with a chronic illness, and considering how little understanding there is among the general population and even many doctors about the effects of being chronically sick, it’s understandable if you’ve done (or not done) some things to deal with your illness that you now regret.

We asked our Mighty community to share a mistake they made when they first noticed chronic illness symptoms and what they learned from it. If you have done these things, too, it’s OK — you’re not alone. We’re all in this together and learning how to navigate this chronically ill life.

Here’s what the community told us:

1. “My mistakes are many… my first is I try to push through because ‘someone else has it worse and they can do all these things I can’t. Maybe I’m just being a baby.’ Then I push too hard and I get worse. I can be down for a month at the least.”

2. “I kept fighting to return to ‘normal.’ I wish I could go back and tell myself it’s OK to grieve the life you lost, but it’s not all right to use your past to undermine the life you have now. Sure I miss hiking and school, but the parts of me that like nature and learning haven’t been taken from me. I don’t have to tie my identity to past capabilities. It is possible to find a balance between my interests and new physical limitations.”

3.I made the mistake especially with physical therapy of living by the motto of ‘no pain no gain.’ This would always make things worse, sometimes leaving me bedridden for days. My husband mentioned it to my physical therapist and she broke down why that motto is BS and from then on would constantly remind me not to overdo things.”

4. “When I was first diagnosed with Crohn’s disease I listened to what everyone said I should be feeling instead of listening to my own body.”

5. “Trying to ‘fix’ it. I didn’t accept that this was a new reality for me. With hard work and determination, anything can be fixed, right?! What I needed was some counseling or a support group to process the massive changes my illness has made to my daily life and my plans for the future. What I did was waste money, time, and effort pursuing anything that might help.”

6. “When I first became chronically ill with postural orthostatic tachycardia syndrome I made the mistake of withdrawing myself from everything. My only safe place was my bedroom. I rarely left the house. And because of that, I became agoraphobic. Also, I tried to keep my emotions and feelings to myself so I wouldn’t be a mental burden to others. I would later come to find that doing so only made me sicker.”

7. “When I was diagnosed with chronic migraine and chronic tension headache, every time I went to the doctor I hoped for a miracle. A pill, a shot, a surgery. Something that would ‘cure’ me. I always left disappointed and in tears when they couldn’t deliver. I am realizing that if I just take one day at a time, my outlook is so much better. I may never be ‘cured’ of the pain, but there are tools out there to help me manage. I am finally OK with that.”

8. “The biggest mistake I made was not telling any of my friends…. I was 13 when I was diagnosed with POTS and arthritis/tendonitis and I for some reason felt ashamed for it and I didn’t want any kind of questions or special treatment… I found out that people are truly understanding and there for me and that also I am not alone in this, my friends and family are here for me, and there are also so many others our there like me. Now I feel no shame talking about it and I will openly discuss my illnesses with anyone.”

9. “The biggest mistake I think I have made (and am still making) is not seeing the value in myself after being diagnosed. I was also making assumptions for others about how they saw me and what value I had to them. I somehow thought I wasn’t as valued unless I was doing everything as I could before. I remind myself that I am setting an impossible standard for myself and my value isn’t based on what I have done in one day, but how I have valued that day.”

10.Not believing I was chronically ill! So many doctors for so long said there was nothing wrong with me — and so many people did not believe me (friends and family) that I constantly questioned myself — to the point I would question doctors who did understand there was something wrong. I kept thinking it was all my fault… I ended up putting off real treatment for a long time because I convinced myself that there was really some magic cure out there — and ended up making myself a lot sicker than I already was.”

11. “The biggest mistake I made was refusing to ask for or accept help. I made myself worse because I was being stubborn and thought that accepting help made me weaker. In all reality, accepting help made me stronger. I am able to admit to myself what my limits are and I’m able to progress better with help.”

12. “I just completely gave up. That was my mistake, I just lay in bed all day every day for weeks and weeks, I refused to shower or eat and I was hospitalized and tube fed because all of the energy just left me. The worst mistake was giving up hope, and I did that because nobody had told me about how to cope! I’d only been informed about the symptoms and that made it so hard to know how to cope through the first few months. I hadn’t even heard of the illness before so if I’d known I’d been able to cope much more!”

13. “Thinking I would find ‘the doctor’ who would know how to fix it all or that it could be fixed. Now I’m just happy if one listens and at least tries to deal with their part of it.”

14. “I would feel good one day, so I wouldn’t take my pain meds that day. Boy would I suffer! Or I’d feel good and do something like rake leaves, etc… then I’d be in pain for weeks! It’s been 16 years. I have learned!”

15. “When I was first diagnosed with reflex sympathetic dystrophy syndrome, I convinced myself that if I were a perfect, compliant patient and pushed myself every day, I could make it all go away.”

16. “My biggest assumption/mistake was assuming every doctor makes an accurate diagnosis. Sometimes they don’t.”

17. “Believing that I had to fight all the time. Refusing to accept my diagnosis meant that I was denying a part of who I am. Accepting is not giving up. It is learning to love yourself, diagnosis and all.”

Have you made any mistakes in dealing with your chronic illness, and if so, what did you learn from them? Share in the comments below.

17 Mistakes People Have Made When They Became Chronically Ill

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