Is It Invisible?

When Mums (my 100lb Great Pyrenees St. Bernard puppy) starting acting up we had to figure out why. Being sick has led Mumford to be possessive versus protective. So, this means he needs brand new all day training. During the past few weeks, it had been a very emotional time. Yet again in my life I had multiple people tell me that I may be too sick to care for him properly. Two days ago, my new dog trainer asked me “Are you too sick to do this?” How many times have I been asked that question?

Something kicks in, this fire inside me that refuses to lose more that I love. I took a deep breath, felt my level 9.5 pain (rating based on how someone without my illness would respond, on my pain scale I would say a 5), and stood up. Ready, ready to fight like a warrior. I’m sure it wouldn’t surprise you that this is something I choose to do every morning, but some things are harder than others.

Now I’m going to ask you to consider some things.

  

Many people would be surprised that this is the same person by just looking at the photos. In the first photo I am 23 years old, 108 pounds, and about to attend my best friend’s bachelorette party. What do you think when you look at this picture? I am usually told that this was my “prime."  That I am sexy, gorgeous, skinny, desirable, and confident.

In the second photo I am 25 years old, 190 pounds, and celebrating my best friend being in town. What do you think when you view this photo? For this photo I usually get overweight but pretty in my curves, thicker, needs more exercise, but happy (fat shaming NEVER helps anyone. “Fat” doesn’t always mean unhealthy.). 

Let’s dig a little deeper. Look again at the picture of me blonde with what I’m about to say next on your mind. I was unable to care for my sick body, and I was trying to work full time. I was only able to keep down one tiny meal a day. I was sick ALL the time. In this photo I have tonsillitis and a kidney infection. I had also begun a new medication to help. So I was dizzy, nauseous or vomiting, exhausted, sleep deprived, and cognitively I was messing words up and stuttering when I spoke. I had chills from the amount of pain that radiating through me. Pain level 8 on my scale.  I was also struggling with depression due to my illness. Right before the photo, I had to evaluate the amount of blood I was losing before partaking in festivities.

Now let’s look at the red head photo. Here I have gained incredible amount of weight very quickly that my body won’t let go because my body is attacking itself. My body is attacking my bladder, uterus, ovaries, vulva, intestines, nerves, and esophagus. The attack is so swift and strong that my body begins to hold onto every calorie it can take to fight a war. Here I’m on a cocktail of new medications, everything I eat turns to fire in my body, I am still eating one meal a day, I’m exhausted, again struggling with depression from being sick, and inflammation has taken over most of my body (I’m just on fire. Even if you touched my arm I would internally jump.). Pain level 9 on my scale.

Most people assume that when I was thin I was happier and healthier. That is an assumption a great deal of society believes. I can honestly share that I felt absolutely awful in both of these photos. Of course the goal is to get to a medium size and find ultimate healthiness, but as the doctors assure me this could take years of struggle. I will never be cured so balancing my outside looks will always be a problem. Oh let me tell you how much this drives some in my life, dates, and society, crazy!

Having an invisible illness can be helpful and hurtful in daily life. I am able to mask my disease when I can, and want to. This means that I can look pain free if I don’t want people to know. However, this one positive comes with problems to juggle. When I hide my illness I cannot get the support I need, people have higher expectations of me that I cannot always fulfill, and I can be treated as just another dumb blonde.

When I do come out about my disability everything changes. There is greater disbelief, huge amounts of stigma, people treat you very differently when they know you’re sick, people think they should share “cures” for my inability to be normal, etc. However, on the flip side I am able to get the accommodations I need, support when I need it, and more alignment with my core self. People tend to loop me into the category of “poor sick girl who will never be able to use her intelligence or gifts.” I find it so fascinating and heartbreaking the way we judge one another based on looks and success.

On top of dealing with what others’ think, most of us are juggling what we think of ourselves. Who I am inside grows and changes with lessons learned. However, who I am on the inside does not change regardless to what I look like on the outside. Even though people judge me differently, I am still the same woman with the same brain and heart. At times I scream, and even now feel the rush of frustration going through my veins, because I feel trapped. I feel trapped in a body that cannot express what I want it to or do what I need it to. I feel like a healthy woman stuck in a 90 year old body.

Why do we as humans judge one another based on how we look on the outside? What if we start to get to know the true person they are inside? What if we began to respect people as they are within their shell? Our bodies are a representation of us yes, but they are just the shell we decorate. We all deserve to be treated with kindness, respect, compassion, and acceptance. When someone is vulnerable in this world we should be taking him or her in not shoving them into categories and making rules.

When have you been judged on your body? If you have an invisible illness when do you choose to hide it? When do you choose to share it? What do you wish you could say to those facing this struggle?

I give everyone a challenge of thinking before they judge.  A challenge to give out kindness and compassion.

As always, thank you for reading!

<3 Chronic Pain Warrior

My Voice on Advice

I was recently asked by one of my fellow chronic pain warriors, who struggles with a physical disability, what I advice I could give. I am no expert, but here are my thoughts.

1. The most important thing I ever learned was to listen to my own body. I know my body better than anyone else, including doctors. I have seen around 20 different doctors. Each of them has a different idea of what my body needs. This can be as subtle as a diet change to as invasive as neural spinal surgery. In September 2015, I tried a nerve block that went wrong. As my dearest friends know, I was unable to walk and the pain lasted weeks. What did I learn? Be your own advocate. If I listen to what my body needs then I can be my own advocate. Now, most of the time I am telling my doctors what I need, and then we figure out how we can get it. I read a ton of research, know most of the disability laws, and stay up on the latest news. I also kept a journal for a while that marked down what I did, ate, who I saw, etc. It helps to evaluate your good and bad days so you can make connections.

2.Try to avoid stressing out. Stress just increases pain and emotional pain. Remember that asking for help or getting the assistance does not make you any less of a person. In our world stress is a constant, so I know that this comes with an eye roll. However I will continue to preach self care, self care, self care. It takes practice (grad school taught me that). Don’t give up the fight to love your body!

3. Always remind yourself that you are working harder than most others around you. You are AMAZING because you do everything in pain. Pretty much you're a super person! So it's totally okay if you need more breaks or to do things at your own pace. My bathroom mirror is covered in self-affirmations and I post quotes around my house and office to remind me daily of how awesome I am.

4. Find friends who support you. I live firmly live by the belief, and I preach this as a therapist, A SOCIAL SUPPORT SYSTEM WILL GET YOU THROUGH ANYTHING! It took me some time, but I am now blessed to have friends that can accept my boundaries. Even more than that I have friends that still make fun out of my bad days, my down days. Also, make friends like me…those of us who struggle with chronic pain have to stick together. I've gained surprising new friends by being honest and open about my disease. We all need someone to yell to, cry to, or someone who can just be with you and not ask questions because they understand.

5. Give yourself time to grieve. As an individual who knows the able-bodied person they were, that they will never be again, some days feel pretty bleak.  I was told that I should grieve and move on. This is unrealistic and an unfair request. Chronic pain, illness, and disability ebb and flow. Some times we are worse and some times we are better. The grieving process is one we will always carry.

This one is the most personal one to me because of the depression I faced when I was diagnosed, when I relapsed at 8 years, and then my body began attacking almost every organ at my 10-year mark. When I was first diagnosed it took over a year for me to get through the stages of grief. At my 8-year mark it took me longer. At my 10-year mark, 11 months ago, I hit my lowest. I am still going through my own individual grief process.

My point being that you will need time to grieve. It's okay to be pissed off and sad that this changes you. It’s okay to feel desperate, terrified, angry, hopeless, and sometimes even euphorically happy. The grieving process is different for every person. Don’t put a time limit on yourself. Attend support groups, begin counseling, and maybe start a journal. Just don’t give up or fear you are alone. (National Suicide Prevention Hotline (800) 273-8255) 

6. Figure out what YOU need. Spend time getting to know your new self and body. Have fun with it and get creative. Take yourself on dates, try new things, and enjoy some of the old things you are still able to do.

7. Celebrate the small things. Along with the sad things comes a whole lot of resilience. You are stronger than many people, and this gives you a new view on life that many people will never have. Remember to love the small victories as much as the big ones. Every baby step forward is something to celebrate. Take the world in and find the beauty left in it.

8. Breathe!! Meditation and breathing have gotten me through the worst pain bouts. Pills don't usually help me, so finding a way to center yourself mentally to get through it will help. There are a ton of amazing mindfulness websites, but even better than that are therapists who can teach you and guide you.

9. Laugh a lot...as you all know I do this a little too loudly. In the good and bad moments be silly, do your feel better dance, and surround yourself with people who make you feel energized.

10. Altruism. Help others who struggle like you do. I know I went to the extreme by dedicating my life to helping people, specifically hurting individuals, but it feels good to know your knowledge may help others. It is also scientifically proven that altruism fights mental health issues (if you would like articles I have many! Or you can just pick up any Yalom book).

11. Practice telling others what you need. We cannot expect employers, friends, family, etc. to be mind readers. Practice on safe people first if this helps.

This is not a perfect list. So I would love for many additions. What advice would you give? What would you tell those you love you need?

What would you wish those in your life suffering with this struggle would ask you for or tell you? How do you wish you could help?

Again, thank you for taking the time to read.

<3 Chronic Pain Warrior

I swear I’m not a Jerk…oh, and I’m not Pregnant!

As I am just healing from bronchitis that lead to pneumonia, I can tell you that going out in public is an act of courage. I often tease about my fear of buses, planes, theme parks, and pretty much anywhere public! A few weeks ago I took my nieces and nephew to Sea World. The day before was a serious battle of choices. I knew that going would mean I would get sick. How do you decide between unforgettable memories and a week of hell?

I cannot tell you the countless amount of times I have offended someone who is sick because I don’t want to be near them. This isn’t because I don’t care about them or want to be rude. In our society we are often pushed to never stop. Even when ill it is looked down upon to take a day off work or seclude yourself to heal. Yet we have growing numbers of people with autoimmune diseases.

An autoimmune disease in short is a disease in which the body’s immune system attacks its own healthy cells. Many autoimmune diseases are correlated with inflammatory conditions. Each and every one of my illnesses are inflammatory. Webster’s dictionary defines inflammation as “a localized physical condition in which part of the body becomes reddened, swollen, hot, and often painful, especially as a reaction to injury or infection.” So stop to imagine this for a second. How do you think you would look and feel if your esophagus, bladder, vulva, ovaries, intestines, hip, and limbs are inflamed 80-90% of the time? On the outside you look normal besides my favorite feature, a majorly swollen body (I could also add that when you’re sick your body holds onto calories, which means my body is always holding onto calories. This will be another tangent on another blog!).

My most prominent swollen feature I call my ‘Buddha Belly’. This came about because my belly is rock hard, huge, and you’ll often see me rubbing it when I think no one is looking. This is not meant to be offensive or ill humored; but as I will talk about again, humor is a good safety blanket. To get you back in the imagination mode I attached a picture of my belly you can see below.

With this picture and your ideas about your inflamed body please put yourself back into my shoes. When you wake up, and at the end of the day, inflammation is at its worst. So now picture yourself going about your day, each and every move you make, and think about the amount of inflammation you are carrying. On your way home from work you need to stop by the grocery store. While at the store, a woman asks you ‘When you are due?!” or you hear a child say to their mother ‘Mom, that lady is fat!” Or we can make it a really bad day and have someone confront you about taking a disability parking spot when you ‘clearly don’t need it’, and because of this they begin a lecture on ‘people who really need the spot that you are intentionally hurting with your selfishness.’

This is everyday, 365 days of the year. So tell me how are you feeling about yourself, about your body? I can give you a list of a few I often feel: exhausted, sore, fat, ugly, frustrated, angry, sad, and run down. Now I’m gong to make it a bit trickier for you. Take alllll of this and add two sick people you are working with at the office. You hear their cough, see their runny nose, and watch them touch the shared office supplies. You know your body is attacking itself because you can FEEL it, so what runs through your mind when you look at your kind sick colleague? FEAR.

If the body is already attacking its healthy cells then imagine how easy it is for unhealthy cells and bacteria to enter the body and attack. To keep myself safe I have to make calculated choices. I own endless bottles of sanitizer, keep wipes in my purse and desk, have tissues in every purse, etc. It’s easy to clean my space once someone is not around, but what do you do when that person is present? Cleaning after them, moving your seat in your weekly meeting, or cleaning your hands after shaking a new person’s hand are usually seen as truly offensive. How can I tell you that if you have it so do I? What is the smooth way to explain that I am not trying to offend you, but I am trying to take care of my body? This can be especially difficult when I’m already frustrated at the countless amount of people that judge me on my body without invitation.

Humor is the way I choose to handle it. Teasing about my condition is something I do almost immediately when meeting someone. Of course, when best I take the time to explain my condition and why I need space if you are sick. However, most people are in a hurry in this fast paced world. So this leaves me with fewer options. There is a fine line with humor though because this opens up the door for them to tease you about your condition too. No one is perfect. I’ve even had professors make fun of my illness to full classrooms.  I’ve walked in on colleagues making fun of me while making copies in the copy room.

This is where I am currently stopping to take a deep breath because I remember that I am not alone. How many other people in this world face this struggle? Too many to count. Having an invisible disability complicates the stigma, judgment, and relationship difficulties those with disabilities face.

This is where I ask you to think about everything I just threw at you. If you share this struggle, how do you best handle it? How do you wish you did? If you know someone or have a relationship with someone with this struggle, how would you like them to handle it with you? How would you best wish I open communication with you?

I ask for compassion and communication. This is where I also add that I am blessed to be surrounded by supportive friends and family (again, another blog for another time). Thank you for reading and taking the time to enter my journey.

<3 Chronic Pain Warrior

My Chronic Pain Journey

I am a chronic pain warrior. I have been diagnosed with Interstitial Cystitis, Vulvodynia, Neuropathy, Fibromyalgia, IBS, chronic Migraines, chronic Fatigue Syndrome, chronic bouts of Colitis, and chronic bouts of Esophagitis. None of these illnesses have a cure; only pain management techniques. You name it and I’ve done it!

My story is quite unique and begins with a bumpy start. If you are the faint at heart this may be the section to skip.

For two years starting at age 5, I was molested by a female who preferred to use sharp objects to injure me. Years later, I learned that this led to neuropathy in my vulva and bladder regions. Consequently, my entire childhood I was a ballerina and dance was my therapy. Although it led to a struggle with anorexia, it was my reprieve from internal bodily pain. Little did I know that food equalling pain had nothing to do with my appearance. At the age of 15, I was injured badly during dance class. I learned I could never dance again. This injury led to further neuropathy in my right hip. Additionally, I suffered from multiple sexual assaults and relationship violence situations throughout my teenage years that furthered my neuropathy. Moreover I had no idea that there was a storm brewing. At 15 it was easy to ignore. I began getting MRIs, CT scans, and everything that could possibly explain why my body was struggling against itself. No answers. 

5 years later, as a 20-year-old woman in college, my struggles began to increase in frequency and intensity. My studies began to fall into last priority, my relationships struggled, and sometimes my pain was so intense that I couldn’t move myself at all. Some days were filled with depression and intense fear, while others were simply beautiful.

After too many days and nights of my boyfriend picking me up off the bathroom floor and putting me to bed, I decided to become more proactive. I began seeing about 8 different doctors in my quest to feel “normal” again (I must add at this time I participated in psychotherapy for multiple years, which was an essential part of my recovery). My first diagnosis came from a doctor who just threw pamphlets at me. She explained that I have Interstitial Cystitis, which is incurable. She told me that I may be unable to work, I cannot go to grad school, I cannot have children, I cannot have a high stress life, I cannot exercise too much, and I have to change my entire diet. She was telling me that my hopes, my dreams, my plans, and my healthy body were gone FOREVER.

No exercise other than walking or very light yoga. No dairy. No citrus. No caffeine. No carbonation. No alcohol. No ability to sleep less than 9 hours. No two stepping with my friends. No future children. No becoming a counselor who travels the world to empower girls, boys, and women. No idea on how a significant other would want to love someone forever ill. No idea on how to keep up with school and my amount of pain and blood loss. No direction.

My senior year of college, and my first year diagnosed, was bumpy and lonely. My father and emotional rock passed away suddenly, I lost my most significant healthy romantic relationship, and I was terrified. I mainly had to learn how to cope with high pain levels (IC pain alone is compared to the pain someone with stage four cancer suffers). I remember starting my internship in crisis intervention, taking 19 units, living alone for the first time, and trying not to drown.

There is one day that is clear in my mind. I remember laying on the grass on my school campus studying. I sat and watched couples playing and laughing, groups playing different sports while talking, seeing people drinking alcohol, and listening to a group of women shame their perfectly healthy beautiful bodies. Losing who you are as a healthy person is a journey that never ends. I still see able bodied healthy people and miss that part of me. 

With the support of my family and faith in the Lord, I was fortunate enough to find a great doctor in my hometown in California and in the city I planned to move to in Texas for graduate school. Yes, I decided that even if it destroyed me I would not give up on the path God set me on to be a counselor. I underwent a bladder hydrodistention before leaving for school. This is a surgery where the doctor fills the bladder up with a chemical cocktail in order to stretch it almost to the breaking point while burning away the ulcers. This is meant to cause scar tissue to build in replacement for my nonexistent bladder wall.

At this time, I also tried handfuls of different medications. I cannot tell you the amount of weight loss and gain, hair loss, chronic vomiting, and dizziness that plagued these days. At one point I was lucky to consume a handful of dry plain cooked noodles. However off to Texas I went!

This is where I began taking Amitriptyline (Elavil) in large doses to help me cope with the demands of graduate school. Throughout graduate school I went through physical therapy for pelvic floor dysfunction, bladder instillations, acupuncture, massage, Chinese herbal medicines, and multiple different hormone therapies. How I passed my classes, began practicum (seeing clients), dated, made friends, and survived I still do not know. Well, as one of my brilliant professors always said, “social support is everything (Dr. Linda Rubin).”

Some days I can remember sitting in class, even my most favorite classes, sweating, dizzy, throbbing, burning, and almost unable to breathe from intense pain. Rightfully so, my yearly reviews encouraged me to speak out more and be more a part of my class environment. I had a daily struggle trying to manage my pain through meditation and breathing so I could speak up. There are times I walked through my front door at the end of the day and fell on the floor unable to move for hours. When I sought help through school disability they explained to me that our government sees graduate school as a privilege. Thus outside of a pass to leave to use the restroom frequently, there was no help I could gain from the university. Again, I was blessed to have some professors, supervisors, and colleagues who supported me even against the rules.

At this time my faith grew stronger as the pain grew worse. What I remember most about this time in my life is my practicum experience because when I am in the room with my client all else fades: my pain and my focus on myself, and everything seems the way it should be. My profession began as a way to help others and in the end it saved my life.

The worst part of this journey was watching my mother and closest family members struggle. My mother still struggles when she hears the word disability. I watched my family begin to cope well, and not so well, with the stigma, judgment, and cruelty we were facing with me being chronically ill and disabled. My friends began to struggle with my absences and frailty. Dating was just an absolute mess. The loss of another significant other due to his inability to cope with my illness cut off my hopes in that arena. 

Near the end of my graduate school career my body began to attack itself harder and faster. I was losing blood out of every orifice at alarming rates. I was doing everything ALONE. My last year, especially last semester, of graduate school taught me who I was; this new me that had strength in her weakness. It was the hardest and best year of my life. Although I still remember the day I gave up hope completely. At 11pm I knocked on one of my best friends’ door and fell onto her lap. I looked up at her after sobbing and said, “I can’t do this anymore. I can’t feel this sick anymore. I….can’t….do this….alone…” I had to learn how to reach out and ask for help.

I moved back to San Diego to be close to my mom, stepfather, and sister so I could have help trying to heal. Again, I began to reach out to new doctors, support groups, old friends, new friends, church, and myself. After months of unbearable pain and blood loss while in and out of the hospital on morphine, I am here today.

5 months of hell and here I stand, well mostly lay down. I have found amazing doctors who coordinate my care beautifully. This includes a urologist, OBGYN, Pelvic specialist, Vulva specialist, GI doctor, Pain Management doctor, and psychotherapist. I have been properly diagnosed, but there is still the knowledge I have every day that there is no cure. I am still undergoing huge medication changes after surgeries, procedures, and invasive treatments. I have made it past my mom having to hold me so I can go to the bathroom, dress me, shower me, help me attempt to use one leg at a time when I was unable to walk, and nights of keeping my sister awake from cries of pain. I still live each day at a 8-9 pain level, but I am living. Some days are brutal and it takes all of my strength to breathe, but on other days I can pick my niece up and run with my nephew into the ocean.

Of course there are many facets that make up a human, and this is only one part of who I am. However this is a huge part of who I am because each and everything I do comes with a cost. I am still behind in school for licensure in CA and some days I lay in bed crying in pain until noon. My condition may not be fatal, but it ended my life as I knew it at 20 years old.

I lost the woman who jumped out of bed in the morning, and instead began 
starting the day with blood loss and vomiting. However, I found the woman who gets up and takes 30 minutes to pray and meditate everyday. 

I lost the woman who can eat whatever she wants, but I gained a woman who eats for nourishment. 

I lost a woman who could stay up all night for days, but gained a woman who puts her body first.

I lost a woman who was always moving, but I am still a dancer and runner on my good days. 

I lost my gorgeous figure and everything that society deems worthy, but I am even better than those standards now. I am strong in my curves!

I lost the woman who could care for herself alone, but I gained a woman who can give and take in relationships every single day because she isn’t afraid to ask for help.

I lost the woman who could wiz straight through her Phd, but I am now Lindsey Mae Huber M.A. (soon to be LPCC-I).

I lost a fearful woman, and now I am afraid of nothing. 

I lost the girl who internalized her pain and beat up her body.

I gained a woman who is strong in herself, her goals, her needs, her relationships, her faith, and most of all doesn’t always hate her body.

Chronic pain took my life, but it continues to build me a new one.

<3 Chronic Pain Warrior