When My Health Insurance Said I Had to Try a Different Medication

834
834

I recently switched to a different form of health insurance and all the medicine that I have been on for years has to get pre-approval before they let me continue taking it. They decide this mostly based on how expensive the meds are. Recently I ran out of Lyrica, which is one medicine that I never want anyone to mess with because it helps me so much. I had to go through horrible withdrawal symptoms including headaches, intense night sweats and a low grade fever for a few days while I waited for them to decide whether or not I can keep taking my much-needed medicine.

Finally, when they came to a decision they said I need to try something else and that I can no longer take Lyrica, which I have taking for more than five years. I burst into tears when I was told this. Lyrica means I can function without too much pain, it means I can get off the couch and do things, it means I can be productive. I was devastated by this news. I can’t go back to how I was before I started taking it.

It isn’t that I am not willing to try a new medicine, it is that I am terrified that it might not work when I know for a fact that Lyrica does work for me. I am tired of having to constantly jump through hoops just so I can feel a tiny bit better. I am tired of having to be told that I have to stop taking or doing something that is genuinely helping me. That is a very cruel move.
It is beyond frustrating when things like this happen. It feels like I am locked in a cell, looking at the key to freedom, but never able to reach it because someone keeps moving it further and further away, making sure that it is still in my line of sight just to taunt me.

I wish people who make these decisions could live for one day in the shoes of someone with a painful, chronic illness so they could understand just how devastating these forceful changes are. Why fix what’s not broken? Why make me go through the hassle of changing medicines, a situation that could be very hard and perhaps painful for me?

I am hoping this works out for the best, but I have been down roads like this many times before. I know hope does not guarantee that this is actually going to help. Behind the hope is a grim realization that this might not work for me and I will be forced to jump through many more hoops only for that little bit of much needed relief. It is cruel to take away something that is actually helping someone. Maybe this will work out for the best, only time will tell.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Photodisc

834
834
TOPICS
JOIN THE CONVERSATION

When People Ask How I Keep My Faith When Prayer Doesn't 'Heal' Me

584
584

Sundays are probably my favorite day of the week. I grew up in a Christian home so Sunday means church which as a kid meant I got donuts and a coloring page! Awesome, right?

Five years ago when I was diagnosed with gastroparesis there were a lot of unknowns arising around us. This happened shortly after being diagnosed with bipolar disorder. I hadn’t even had time to process that, but then I was told I was dying of malnutrition? I felt so alone and helpless. Let’s add “hopeless” to that while we’re at it. Nothing would ever be simple again, and I knew it. A lot of prayer and crying and begging for God to fix this and make it all go away has happened over the years. If I prayed enough he would heal me. He heals others. Right?

Fast forward to today. My other half and I have been looking for a new church to call home. So we tried a new church. This church we went to had a pastor who did a message on “Why are you so afraid?” He shared some scripture but mostly of this story of how all of the sudden his wife fell ill. They spent 10 days in the hospital and things were looking grave, but the church rallied together and prayed for them and the doctors and nurses could feel this energy coming from her hospital room and they knew something was different. I am sure I can spare you the rest. Most of us have heard these stories: fall deathly ill, the world prays about you and for you to heal, and bam! It’s a miracle! You’re going to live because you prayed just right and God has healed you! You did everything just right because the answer is always Jesus.

Now I am sitting in this chair (because churches rarely use pews anymore) and I am hearing this wonderful story. (I am happy she is doing better, by the way.) Here I sit, thinking, Where did I go wrong? I have asked that question so many times I have lost count. I have asked many more that make me spiral into this deep depression and self-loathing thing that I don’t think I can pull myself back from. You may ask me, “How can you have faith, Abbey? How can you still be a Christian when everything you hear is prayer heals and you’re still sick?” I have the answer for you, and it is not Jesus.

I need that faith. That faith is how I pull myself back from all the darkness and negativity from within myself. I choose to believe there is a God out there who loves me so deeply that He chooses to heal me in a way I have not understood until today. The way I think about my situation, my heart, my soul, and the way I see things are all examples of how He has healed me. Is it perfect? No. He is still working on me. Always will be. That’s not how I originally would have defined healing? Would you?

I still have gastroparesis. I still deal with bipolar disorder, anxiety, IBS, and whatever else my body decides to throw my way. I am always tired, and it’s a tired that is beyond what a quick stop to Starbucks can fix.

So none of this is well with my soul. My soul aches, and I am mad and frustrated and want so badly to find this bigger purpose for why I go through what I go through. What is in fact well with my soul is through church I met my person (if you have watched “Grey’s Anatomy” you get it), and my person has been amazing support, alongside my parents. So yeah, there are things I truly believe God has led me through to get to where I am. I will continue to try churches and have faith because at the end of the day that is everything to me.

It seems that all of my days feel like I can’t stop the endless fall like Alice in Wonderland. Except I don’t get to land anywhere. I am never quite sure what to do to pull myself out and up.

Follow this journey on Spoonie Meets World.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by stevanovicigor

584
584
TOPICS
JOIN THE CONVERSATION

Why I 'Complain' About My Illness on Social Media

697
697

Recently I’ve started seeing posts telling other people with chronic illnesses to stop “complaining” on social media. I dislike these posts because social media is the only place where I feel like I can complain.

When I first made my chronic illness social media account, it was so I could have an outlet to talk about how I have zero spoons and spent the entire night with painsomnia.

I think telling other people that they can’t “complain” about how awful they feel is ableism. To me, telling other people that they can’t talk about how awful they feel because other people are sicker is like telling them their pain doesn’t matter.

I use social media to talk about my doctors, my friends who don’t understand, and my symptoms that just won’t go away.

Just because I am not on chemo or in a hospital doesn’t mean that my feelings are invalid or unimportant. I need an outlet to be truthful with people who just may understand how I feel.

I think there is no point in a chronic illness community if you can’t be honest and share your thoughts, which is exactly why I do it.

Keep “complaining,” you guys, because if nothing else: I care.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by peshkov

697
697
TOPICS
JOIN THE CONVERSATION
woman sitting in chair at doctors office

When It's OK to Support Me by Saying Nothing

267
267

I’m a talker; I believe that words are powerful. A person can be placed on the highest pedestal or reduced to nothing by just a few words.

During the course of my hardships and illnesses, I have learned that the only thing as powerful as words is silence.

Sometimes, words can’t match the healing power of silence; sometimes, words are too much, and not nearly enough.

Nine years ago, I had three miscarriages in less than a year. The first startled me, the second shook me, and the third shattered me. I felt like any minute I would drop dead from the grief. I didn’t realize the pain could possibly be worse until I learned that each precious baby had smothered in my body due to a previously undetected clotting disorder.

After each loss, there were many calls, visits and even cards. There were so many words of encouragement. I appreciate every person and every kind word, but at the time, it all seemed so empty. So often, it felt as if people were rehearsing a script that was designed to bring them comfort. I knew I was loved, but there was no magic phrase to bring my children back.

A few days after the final miscarriage (which ended my attempts to have any more children), I called my friend Steph. Steph lived nearly an hour away, and had gone through similar a year prior. The best I could do was give a brief account of the miscarriage, then I just cried. I felt so bad for completely losing it as she sat there. I ended the call, sat on my couch and sobbed. No one was home. No one could see me. I opened up the floodgates.

About an hour later, my front door opened, and there stood Steph. Quietly, she sat down next to me, wrapped her arms around me, and cried. Not a word was spoken. Nothing. We cried for my babies and her babies and all of the children that had left a hole in the heart of an excited and expectant mother. I don’t know how long we sat there; it was a long time. Finally, Steph got up and left. Not one word passed between us.

In that silence, I heard ” I understand.” “I love you.” “I hate this.” “You will be OK.”

Just over a year ago, I asked my friend Shaun to sit with me through yet another complicated, painful, horrible infusion. After five hours, the infusion was complete, and I was miserable. I was nauseated, my whole body hurt, and I was angry that at 43 years old I was damned to a life filled with these treatments. As Shaun drove me home, I began to cry. I tried to stop, but I couldn’t. Wordlessly, my friend reached over and gently took my hand in his; he didn’t let go until we reached my house. In those quiet moments, Shaun’s actions said to me “I’m here.” “I’m so sorry you have to go through this.” “It will get better.”

There were no words that could make it any better, and my friend instinctively knew that.

So often, our pain doesn’t require appeasing or distraction; it requires reverence; an almost sacred regard for our suffering.This is the exact opposite of what most of us have been told throughout or lives. I grew up hearing “Just one kind word can go a long way” and other similar beliefs. Those things are often true, but not always.

Sometimes, there are no helpful words. Sometimes, silence is all there is. And that’s OK.

We want to hear your story. Become a Mighty contributor here.

267
267

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION
strong woman portrait in vivid colors.

We Are the Invisible Illness Warriors

986
986

We are the warriors. The ones who pour over our medical histories the way other people pour over gossip magazines. Pointing to salacious details, judging each and every thing we see before us.

We are the warriors. Who know more about our conditions and illnesses and bodies than most doctors do. We’ve turned to medical research journals and the internet to learn as much as we can because we often have no other choice. We become experts because we have to.

We are the warriors. We may not always look sick to others, but we are. We fight each and every day against a society that often won’t label us as sick because there isn’t a visible identifier for our illnesses.

We are the warriors. We have probably had to grieve countless activities or foods or hobbies because of our struggles. We will still lose more along the way. We will have to grieve those, too.

We are the warriors. Some of us have had to give up our dream careers because they just aren’t as feasible.  Maybe we have had to change our expectations about what working with our disabilities will look like. We fight for accommodations and against workplace discrimination. Maybe we have lost the ability to work a full-time job altogether.

We are the warriors. We have lost friends or family or both because they just didn’t understand. Maybe they didn’t believe us. Maybe they didn’t want to or even try. Maybe they were mean. We had to grieve them, too.

We are the warriors. We are the ones who fight each day to accomplish the little things sometimes. Fight because sometimes sitting or tying our shoes or making the bed seem like insurmountable tasks that cause so much pain.

We are the warriors. We are called lazy or fakers or liars; sensitive or selfish or drama queens. These words hurt. Unfortunately they often become so common we become good at dealing with it. It hurts, but we learn to handle it to survive.

We are the warriors. We band together and raise one another up and support each other because we have a strong bond. A bond formed due to unfortunate shared circumstances. A bond that can form friendships and relationships in an instant. There’s no replacement for someone who “just gets it” — even if it’s hard to know because they’ve been in the same pain you’ve been in.

We are the warriors. The warriors who don’t give up. Don’t give up despite the fact that it is easier to give in, despite that not fighting for a diagnosis, or treatment, or truth is so much easier. We keep fighting. We keep advocating.

We are the warriors. We are stronger than they think. We are stronger than we think.

We are the invisible disability warriors – bold, brave, and powerful.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by LanaBrest

986
986

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

5 Tough Choices You Face When You're Chronically Ill or in Pain

3k
3k

Having chronic pain or illness — or, as is often the case, both — is hard work. One reason for this is that we must constantly assess and evaluate if we’re managing our health and our relationships skillfully. This requires us to make tough choice after tough choice. Here are five of them that we continually face.

1. Do we push our body to the limit or do we always play it safe?

Sometimes, the desire to be like healthy people is so strong that we can talk ourselves into pushing our body to do what it cannot reasonably do. About two years ago, my granddaughter Camden was visiting. I was so frustrated by always feeling sick when she was here that I decided to “act healthy.” We have a park next door to our house. I took her there for over an hour, helping her with the slides, pushing her on the swings. I was in a defiant mood: “I’m tired of being sick. I’m just going to act as if I’m healthy.” What I got for my effort was a week of payback with exacerbated symptoms.

On the other hand, I find that if I always play it safe, my body gets so used to the strict regime I put it on that I lose my ability to be flexible at all. For example, if I always nap at noon sharp, then if I’m 15 minutes late one day, I feel like I’m going to collapse on the spot. So I purposefully mix up the exact time I nap so that my body doesn’t become conditioned to following a rigid schedule. That said, my ability to be flexible has its limits: I don’t have the luxury to just skip the nap.

If it’s possible for you, I recommend a middle path of gently challenging your body now and then so you don’t fall into a fixed pattern of behavior that underestimates what you might be able to do. But, as with the other tough choices, I find this constant assessing and adjusting, assessing and adjusting to be exhausting in itself, both mentally and physically.

2. Do we keep our health problems private or do we talk openly about them?

If we talk about our health problems, some friends and family members may respond judgmentally or even turn away from us. And even those who don’t turn away may change the way they relate to us. We want to be treated as whole people and as adults, but if we share our health struggles with others, we risk being treated like a shadow of our former selves.

On the other hand, if we keep quiet about our health issues, we risk leading others to misunderstand what we can and cannot do. In addition, by keeping quiet, we’re passing up the possibility of receiving much needed support — both emotional and practical.

If you’re like me, it can be exhausting, both physically and mentally, to continually assess and decide what you will and what you will not share with others about your health.

3. Do we ignore a new symptom or have it checked out by a doctor?

If we raise a new symptom, will our doctor think we’re being oversensitive or that we’ve become a hypochondriac? On the other hand, a new symptom could be the sign of something serious. I read in one of my chronic illness books about a woman who ignored a new symptom because she decided it was best to assume it was related to her chronic illness. She also said that she waited so long to see her doctor because she “didn’t want to bother him.” The new symptom turned out to be stomach cancer.

What to do when a new symptom appears necessitates making another tough choice: wait or act immediately? We have to listen carefully to our body and decide for ourselves.

4. Should we risk trying alternative and unconventional therapies?

There’s no right or wrong course of action here, but it’s a choice that, for me, has been costly, both to my pocketbook and, at times, to my health. I used to spend hours and hours, using up what little energy I had, combing the internet for cures. As I wrote about in my piece “Finding the Health Information You Need on the Internet,” anyone can create a website, set up a payment plan, and ask for your credit card number. People spend thousands of dollars on false cures. I know because I’ve done it.

On the other hand, I’ve also read about people who’ve been helped by alternative or unconventional treatments, so it may not be wise to decide to disregard them entirely. These are tough choices: what to take, what not to take, how to assess the monetary costs, what to tell our doctor about what we’re taking or not taking.

5. Should we aggressively fight to regain our health or should we accept our fate?

Constantly fighting to regain our health is also exhausting, physically and mentally. But the alternative of passively accepting that this is the way we’re going to be for the rest of our lives doesn’t feel like a wise choice either. Again, I recommend a middle path. It took me a while to realize that I could acknowledge and accept my health as it is right now, while at the same time continuing to try to regain the health I had before I got sick. These two courses of action aren’t contradictory.

It wasn’t until I began to accept — without aversion — however I happened to feel on any given day, that I was able to begin looking for ways to enjoy my life again. But an integral part of that life is keeping an eye out for new treatments. It can be a challenge to gracefully accept how I feel at the moment, while at the same time continuing to be proactive about my health… but I’m working at it.

***

It’s hard work to continually assess, evaluate, and choose a course of action while already sick or in pain. My wish for you is that you be as kind to yourself as you possibly can as you struggle with these tough choices.

This blog was originally published on Psychology Today.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Discha-AS

3k
3k
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.