MIA

Leave it to me to start a blog about living with depression, only to then fall back into that dark place. I haven’t written for several reasons but the most honest one is simple: I’m too depressed to form sentences. I’m  aware that I am in fact doing that right now, but last week getting out of bed was something to be proud of. 

This is an ongoing problem in my life. I’ll start something and put every ounce of my heart and soul into it. I’ve started more things than I care to admit but cannot think of one thing I’ve ever finished. Of course, I always believe this time will be different. This is it, this is what I’ve been waiting for. This will change my life, feed the hungry and cure cancer all at once. 

Unfortunately, my highs are always followed by a life-sucking low. Whether it be my half organized and Pinterest worthy house, dieting and exercising, going to church or starting a blog; they’ve all been my focus during a good spell. By the time I’m waist deep in the water, my mood has shifted and I’m frozen in place. I am already half wet but cannot for the life of me take that next step. Fear consumes me and before I know it I’m washed up along the shore again, right back to where I started. 

If only I could feel that surge of energy and excitement on a daily basis; then I would be cured. Maybe I should learn to recognize my good moments as mania and know that it won’t last, but somehow I’m still an optimist. I ignore that little voice in the back of head saying you are too excited, you aren’t tired, yet you’re not sleeping as much, you have too much energy; these are your warning signs. I hear that voice but it’s already too late. 

I haven’t yet found the strength to completely fight my depression or the power to make my good moods last forever. This is why I suffer; this is why I’ve been missing in action. It’s my goal to push through this low and come out ahead. I haven’t given up! 

An Unwelcome Visit

Yesterday I regretfully welcomed an old familiar enemy back into my life. I fought to keep her away; mind over matter was no match for her though. I tried to ignore her and even begged for her to not be there but sadly she was not just a bad dream. She was my depression. 

After months of feeling pretty grounded without any severe ups and downs in my mood, I was surprised when I noticed that I couldn’t shake the overwhelming sense of doom that had surrounded me. I could tell I was increasingly irritable and tired. My head ached and nausea set in quickly. 

Depression is so much more than having a bad day. It’s so much more than things not going your way. It is physical and mental anguish, often times for absolutely no reason at all. There’s no simple reason and unfortunately there isn’t always a simple solution. 

As I cling to the hope that my doctor has a new concoction up her sleeve, I fear it will come with more unwanted side effects or worse, not work at all. For now I’ll continue to deal with the sadness and anxiety as I wait for my appointment. I wish I could crawl into bed until Wednesday afternoon but life must go on. 

Depression will not win today.  I accomplished nothing more than caring for my nephew and making sure my son did his homework, but for today that’s more than enough. Sometimes depression is about accepting your limits and making peace with it. Tomorrow I’ll work to achieve more and will continue to do whatever I can to survive this relentless burden. 

Sick or Lazy? 

I sat at the computer reading my lab reports. (Yes, I’m the patient that gets my lab reports online then looks up every test on Google then looks up all those words in a medical dictionary.) I had been to the rheumatologist for the first time a couple of weeks before.  I was told that she suspected I had lupus from my preliminary labs and exam. She also diagnosed me with Raynauds Syndrome and started me on blood pressure medicine because she couldn’t find a pulse in my feet. I had stopped that because it made my already low blood pressure dangerously low. 

Prior to my doctors appointment I knew that my autoimmune marker was positive and that my inflammatory marker was high. My liver enzymes were through the roof and I somehow, someway was positive for syphilis. Obviously that was my leading question as I fought back tears, certain I had caught a STD from a public toilet seat. My doctor reassured me that a false positive syphilis test was quite normal with lupus and that it only means my body is producing a certain type of antibody.  I sighed the biggest sigh of relief at that moment only to realize that she just confirmed I had lupus. My other tests were all indications of an autoimmune disease. Following one last exam she concluded the appointment by telling me I also had fibromyalgia, handed me a prescription and left the room. 

My first call was of course to my mother, although I was sobbing she could always understand me. I then drove to my husband’s work and broke the news to him. He was visibly upset but I could tell he had no idea what that meant; to be honest, neither did I. My first Internet search was for a new rheumatologist and my second and the following thousand were to learn about my diseases and the prescription I was given.  

Luckily for me, my guardian angel works at UPMC and I was able to get an appointment very quickly to one of the best doctors in the area. My mom went with me this time so I was prepared. This doctor was much kinder than the first, probably because he knew I had connections, but regardless I liked him immediately. He wanted to run his own tests and refer me to a neurologist and a hematologist for consultations. He told me to start the medication which was an anti malaria drug used to treat certain autoimmune diseases. I really liked this man but I left his office even more confused than when I entered. 

After months of tests, doctors, and prescriptions, I learned I had Mixed Connective Tissue Disorder, a general diagnosis for patients with symptoms of more than one autoimmune disease. My symptoms were very specific to lupus but also sjorgens syndrome, Raynauds and polymytosis. He said I needed to get worse before he had a better name for it. I was seriously angry and wanted to punch this nice man in the throat, and I’m not a violent person. I had never heard of MCTD and was certain he made it up to blow me off and just answer my ongoing question of what do I have? 

More recently I learned that MCTD is a very real illness that means you have multiple autoimmune diseases and there is no cure. Like most of these diseases they can only treat the symptoms and try to suppress the immune system.  For those of you unfamiliar with an autoimmune disease, it means the body produces antibodies to attack healthy organs, tissues and cells in your body making you sick. Suppressing the immune system can slow the progression of the disease but there is no cure and suppression comes will the inability to fight true infections, even the common cold. 

I also have autoimmune hepatitis. I freaked out when I heard the word hepatitis thinking I caught something and started giving my husband looks that could kill. Again, I was wrong. Autoimmune hepatitis is not contagious and means that my immune system is attacking my liver causing inflammation. Another big sigh of relief until I learned this chronic disease meant I needed a biopsy. They wanted to stick a long needle in my side to cut out part of my liver WHILE I WAS AWAKE!!! I’m still avoiding that test years later and will continue to do so. The lupus biopsy I had on my skin rash was bearable but this one scared me.  Maybe one day I’ll be brave. 

Lastly was the diagnosis of fibromyalgia. I refused to accept this diagnosis because I thought it was a made up illness used by people that were hypochondriacs. As my pain and fatigue got worse I decided to read more about this disease. Here I was wrong yet again. I had nearly every symptom. Plus, every doctor that had done the trigger point test made me jump through the roof. Could this be a real thing? Do I actually have it? I continued reading and researching everything I could before my next appointment. I flat out told him the truth, I think I do have this disease and I got it because I thought those people were just lazy. He laughed and explained it is a very real illness but a lot of people do not believe it’s real because there isn’t a blood test or X-ray that gives us a concrete answer. It’s a mysterious disease, much like autoimmune disorders and even doctors are stumped at times with these illnesses. He assured me I did not get it from thinking others were lazy; that was simply my guilt talking. He was right, I felt very guilty and also afraid because now people would think I am just lazy. 

All of these illnesses are invisible, people can not look at you and know you have them. They may think you look like you’ve been partying for three days straight and really need to sleep and put yourself together but I can tell you, we probably spent a long time to look this good and spent the last three days in bed. For me, this has been a difficult journey. I suffer from pain, fatigue, insomnia and gained 45 pounds from the medication and change in my physical activity. I get a rash on my face, chest and arms and my feet turn blue when I’m cold or anxious.  I no longer recognize myself when I look in the mirror and I’ve lost most of my friends because I’m too embarrassed by my weight to see them. I am also too exhausted to go out in the evenings and I’m in bed most nights by 7:30-8:00. My liver and kidneys do not function like they should which leads to more pain, stones and infections. These are all the things a person, like me, feels that are invisible to the rest of the world. Having an invisible illness is very real and I hope that by sharing my story, you’ll look at people differently.  

Hospitalization & ECT

My parents and I sat in a waiting room full of patients, all of whom were having a mental crisis. My dad decided to make conversation with the lady across from us and her daughter. She openly told us that she hung herself that morning but it failed to work. She assured me that I would be fine here but I couldn’t help but think my parents were leaving me in hell.  This girl was sent home because the hospital was full, they told her they would call her when they had a bed.  How could they give me a bed over her?  Was I worse than I knew?

A nurse called me in and asked me a bunch of questions, none of which I remember, I’m not sure if I was still out of it from the handful of Ativan or if my brain just blocked it out. The only thing I do remember is being strip searched and forced to squat and cough. I was horrified. How could my family do this to me? I wasn’t a criminal or a drug addict, I was just tired. I pleaded with my parents that I was not that bad, but I knew deep down that I was falling apart and this was exactly where I needed to be.

I was given a room and learned that I would spend most of my days in group therapy. My parents just happened to be there for the family group that was going on when I was admitted. We were the only family present so my parents learned a lot about support and dependence. I spent the first night throwing up and crying and the second day seeing psychiatrist, internist, rheumatologist and more.

As the days passed, I found comfort in the group therapy. I was not alone and I was not surrounded by “crazy people,” there were nurses, a lawyer, an executive, students, mothers, fathers and grandparents on my floor. I listened to their stories and realized we all were just trying to feel better. They understood that I didn’t want to be depressed, I didn’t want to commit suicide, I just wanted to feel like myself again. I wanted to experience pleasure like I once did. I wanted to enjoy the activities I used to.

I didn’t just survive the hospital, I thrived. I attended every group, did every workbook, started a journal; unfortunately as soon as I returned home and faced the real world, I still felt that emptiness. I faked my way through, trying to keep up with the housework and the kids but everyone knew. I stopped going anywhere and I didn’t want to see anyone. I lost a lot of my friends because they just stopped inviting me after awhile, I can’t blame them.

I had two medical hospital stays over the next year, one for shingles that were so bad I required surgery and the other to remove my gallbladder. My depression grew and I finally made the decision to readmit myself to a different psychiatric hospital. This time I went in with a plan. I was going to have electroshock therapy to treat my depression.

My mom cried and asked me if I was sure I should be doing this. Everyone has an idea of ECT because movies and television often portray it as a form of punishment, torture or as a dated procedure that should not be used. I, however, had spent weeks researching the procedure and outcomes in medical journals. I had tried multiple medication changes and intensive outpatient therapy but I was more depressed than ever. I had made up my mind.

I was admitted and scheduled to begin ECT the following morning. That night I worried about the possible side effects, especially the memory loss. Would I forget my kids? Would I forget how to speak? I saw other patients in terrible pain after treatments, would that be me?

The morning of my treatment I was prepped like I was having surgery and taken to what looked like an operating room. There were several other patients. The patient before me was taken behind the curtain and I could hear them telling him he would fall asleep now. I then heard vibration, followed by the doctor saying take him to recovery. It was my turn. The nurses hooked me up to the sticky tabs to measure my heart rate and such. They also placed tabs on my temples and something in my hair on the back of my head. I was given a bite stick and a blood pressure cuff was placed on my ankle. The anesthesiologist told me it was time to sleep.

I woke up feeling groggy and thinking it had only been a few minutes later. I had a slight headache but as the day continued I was fine. I noticed I was talking a bit slower and it took me a moment to find some words but that passed. The most wonderful thing I noticed was that my brain felt empty. I didn’t have any racing, nagging thoughts running through my head. I felt relaxed and euphoric. As the treatments continued the headaches did become worse but I felt like a new person. I felt pleasure. I could read without my train of thought wandering away. I enjoyed arts and crafts, exercised and laughed for what felt like the first time in forever.

ECT saved me. It gave me that jump start I needed. Of course, in time the effectiveness did wear off but I am nowhere near as depressed as before I had the treatments. I am actually considering another round of outpatient treatment because it made me feel so much better. I’m not saying it is for everyone but it was life altering for me.

Hospitalization and ECT are both options for treating severe depression. They are scary and no one wants to be there but sometimes we have to do things that we know we need to do in order to feel better. Neither of these things cured me, I still suffer daily but it helped. I learned tools to use and ECT gave me the ambition to use them. Some days I can’t and I find myself in bed or struggling with my mood but other days I feel enjoyment and I know that I’m better than I was. I also know I will continue to do what I need to do even if it’s not necessarily something I want to do. We all must reach down deep and find that little bit of positive energy left in us and use it to tell ourselves that we will continue to fight this illness.

It Doesn’t Happen Overnight

Depression is not a sudden attack like a migraine, but rather a gradual disease that gets worse over time. If I really think back, my depression started my junior year of high school. I coped by focusing on my weight. The thinner I was, the stronger I felt.

When I was nineteen, I had my first child and married my husband two months later. I never again felt beautiful because I could never lose all of my pregnancy weight. With the stress from my weight, planning a wedding and taking care of a newborn, not to mention my hormones, my emotions were raging out of control. I was diagnosed with postpartum depression and treated with Prozac.

Over the next few years our marriage was loving but we fought a lot. We were both very young and immature. We didn’t always make the best decisions and it caused a lot of stress on both of us. I continued to try different antidepressants until getting pregnant with our son two years after our daughter.

Our son was born with a soft cleft palate and could not eat like other babies. We had to use special bottles because he could not form a suction on the nipple. He did not sleep and suffered from chronic ear infections and acid reflux. He had to have major surgery at nine months to repair the hole in his palate. All of this was very hard to deal with and I once again started an antidepressant.

My husband and I separated on several occasions for many reasons. The constant arguing and my depression definitely played a huge role however his opiate addiction following surgery was the biggest contributing factor. He overcame his addiction after a long, hard road and he has been clean for seven years. He was the pilar of strength in beating his dependency the final time and while it was all I prayed for, once he was better I no longer had his addiction to use as the reason I was depressed. He was better and I wasn’t.

Then came the straw that seemed to break the camel’s back. I made the difficult decision to leave a very rewarding job because I felt it was morally the right thing to do. I loved my job and the people I worked with however I was burned out due to poor personal and business choices being made by my boss. I honestly didn’t expect to actually quit, I had thought he would realize I was only doing what I thought was best for him and his business and make the necessary changes, but he never did. Instead I dealt with months of retaliation which made me question if I ever actually knew him.

Shortly after leaving that job, I started to feel like I was always on the verge of getting the flu. I had aching joints, fatigue, swollen lymph nodes and general malaise. My depression was also getting worse. I saw a new doctor which eventually led to the diagnosis of Mixed Connective Tissue Disorder and Fibromyalgia. I was also given Effexor XR for my depressive state.

My physical pain and fatigue continued to get worse and new symptoms arose. I had rashes, liver problems and headaches. My depression started to feel as though it were burying me alive. I had a constant sense of hopelessness and fear of the future. I couldn’t concentrate and was forgetting simple things.

After seven nights of not sleeping, I found myself desperate to stop the pain. I was beyond exhausted. I was overwhelmed with guilt, helplessness and hopelessness. I felt like every decision I made was wrong. I didn’t feel valuable enough to be loved by my husband and had convinced myself that he couldn’t love me. I feared the future. I felt like I couldn’t breathe so I opened the bottle of Ativan and took a handful of pills.

All I wanted was to sleep and for the pain to stop. I didn’t want to cry anymore. I didn’t want to die but I didn’t want to live either. I loved my family so much that I couldn’t stand the thought of leaving them yet I also felt like I was a huge disappointment and they would all be fine without me. I just prayed that the hurt would go away and then I fell asleep.

The next thing I remember is walking through the doors of the psychiatric hospital with my parents. I was scared but I had a sense of calmness rush over my body. I knew that this is where I needed to be. I knew that my prayers were being answered and that this would help me. I knew I was saved and that I was meant to be here for my family and that somehow, someday things would get better.

Depression is very gradual, it took fourteen years for my depression to reach the point where I could no longer ignore it. My environment and stress played a role as well as my brain chemistry and predisposition. Regardless of the how or the why, it didn’t happen overnight.

This tree grew almost into the ground before changing directions and growing upward.

This tree grew almost into the ground before changing directions and growing upward.

 

The Arch Tree at Sinnemahoning State Park took a turn and began growing downward, nearly touching the ground.  It then changed directions and started growing upward again. This represents my struggle so perfectly.  I felt as though I was going down and I did hit the ground and then I reached a point when I  was able to start my journey to grow upward.  Like this beautiful piece of nature, I know I’m now growing in the right direction.