Updated: Feb 17
The up and downside of chronic pain/illness…spoiler alert, there is no upside. For starters, the fact that I’m even sitting down to write this is monumental in itself. How long it will take me to finish is anyone’s guess! The energy it takes daily to survive unexplainable and unseeable illness is unfathomable to most but very identifiable to others. To confront, analyze, and verbalize the topic not only overwhelmingly adds to the physical and mental fatigue but also forces me to focus on a part of my life that I’d just a soon ignore.
To have one illness that some professionals fail to acknowledge, properly diagnose, or care to treat is daunting but to having several can be difficult to overcome. This is why we see such high percentages of depression and anxiety in patients with chronic health issues. I recently read in an article that was referred to me by my rheumatologist that 75% of fibromyalgia patients are severely depressed by the time they are diagnosed. I’ve read as high as 84%! Irritable bowel syndrome (IBS) boasts like percentages. These numbers vary slightly from article to article but the same obvious truth remains…depression and anxiety are both prevalent in patients with these conditions. I have had two teachers commit suicide under the weight of debilitating and chronic illness.
I’m going to tell my story because I have a point I would like to make. Well, I have several points that I’d like to make but will probably hold back a few as the can of worms is too large…the giant too strong. I have been diagnosed with adenomyosis, degenerative disk disease, bursitis, arthritis, fibromyalgia, IBS, and isolated polycystic liver disease (PLD). PLD is a rare genetic disease that is presumed to have no effect on a person. Oh, how I would love for that to be true! So, I have a rare genetic disease that rarely causes symptoms but, in my case, it does cause symptoms and is not genetic. Should I be flattered by my rarity?!?! Maybe I’ve been looking at this all wrong! I jest. I’m not excited about this as, at age 44, I’d already had the left lobe of my liver removed and numerous cysts surgically treated. The surgeon removed my gallbladder at the same time just for good measure. Due to an unfortunate list of diagnosis’, I’ve had my uterus removed, my spine fused, my jaw restructured, my liver dissected and have tried more diet changes for my IBS than I knew existed.
Big deal right? Ask me how many decades of isolation, confusion, pain and suffering it has taken to track down physician(s) that would give me the time of day. I would go to a doctor, explain my severe symptoms, have them shrug it off…I’d walk away utterly hopeless and completely defeated, sometimes waiting years before I had the energy and COURAGE to confront it again. I know many can relate to this! My liver disease was diagnosable at least 10 years prior to my diagnosis. I know that because it was remarkable (but not mentioned) on imaging that was done on my back right around the time I started reporting abdominal pain to a physician. I have had several doctors raise their voices at me. One told me there was nothing wrong with me. Another went as far as sternly saying that my skin issues being related to the liver was “nonsense”. I had another outright refuse to send me to a liver specialist, saying it was like “asking a car mechanic to fix a washing machine”. I’m still confused by that analogy. To me it’s like telling a cancer patient they can’t see an oncologist. I could write chapters on the lack of compassion, empathy, and professional care that I have received and accompany it with every ounce of emotion spent and tear cried but, shockingly, I don’t have the energy, and quite frankly, I don’t think it’s a healthy place to put my focus. Sadly, I’m not alone and I’m also not a worst-case scenario! My heart goes out to all of you! This is ridiculously and inexcusably common. We have health insurance…what harm can possibly come to a physician for listening and caring. What harm can come from saying, “I’m so sorry you are having these symptoms. I’m not sure I can help but I will sure try and if I can’t, we’ll get you to someone who might be able to.” I can tell you with 100% certainty that much of the anxiety and depression that accompanies these issues come from being ignored or dismissed by people in healthcare. I know because my lowest moments have resulted from lack of care.
All that to say, I have also had some phenomenal doctors in my past but I recently (FINALLY) encountered some kind and helpful physicians that were willing to take a close look at the symptoms relevant to potential autoimmune, the liver, as well as the syndromes that often times do not get acknowledged. I’m now in touch with medical support that says, “What can I do to help?” Wow! The clouds parted, the sun’s rays warmed me, my blood pressure came down, I stopped trembling and my eyes welled up with tears because someone said, I hear you and I’m happy to help any way I can. I feel safe!
I do have to say that, as a disabled veteran, my VA team has been nothing short of amazing. Not the VA as a whole…they’ve earned their reputation, but my local team has been cooperative and understanding. Often times, people like me have to diagnose ourselves using Dr. Google because, what other choice have we been given, waiting months for an unproductive appointment as conditions (or at least symptoms) worsen. Yes, I’ve also been laughed at for that by the same pros that refuse to even try. My VA team takes me seriously and gets me the referrals I need. When I say there’s something wrong, they pay attention.
It sounds like I’m banging down the doctor’s doors and whining 24/7 but keep in mind, this is over the course of decades where I am in agony a long while before I make myself vulnerable enough to seek help. In 2016, my L3 herniated. It was the dead of winter in Montana, my husband was deployed and I had three children at home. My dorsal nerve root was fully compressed and I thought surely, I would die from the constant and inescapable electrocution I was experiencing. I was crawling up and down the stairs, falling on the way to the restroom, trying to figure out how to get in and out of the bed, etc. Definitely my darkest of days! After three trips to the ER and three denials for an MRI, I finally got an MRI done but only because my sister, who worked in radiology, literally wheeled me out of the doctor’s office mid-appointment and over to the MRI scanner where her supervisor had agreed to do my imaging immediately. She told the scheduler (poor lady), “This is getting done today!” And varooooom, we were outta there man! I proudly laugh now looking back on her boldness but am brought to tears by the love and protection she provided me that I was incapable of offering myself. She clocked out of work because I needed her more than they did. The ER doc was not happy with her as she continued to advocate, refusing to be turned away…for a fourth time! Lo and behold, the imaging showed that it was bad. The tattooed, bad ass, ex-military, war hero physician immediately softened. Later but pertaining to the same injury, a radiologist materialized out of nowhere, got down beside me and took my hand in his while coaching me through a very painful and unmedicated procedure. Afterwards I said, “I though you said it wasn’t going to be as bad as a discogram.” He replied, “We didn’t know how bad it was.” Before my back surgery in 2009, another radiologist begged me not to go through with a discogram…he didn’t want to do it…God bless him…I should’ve listened! My point being, I’m not a wuss. I have concluded though, that radiologists sure are softies! I’m teasing! What a blessing they were to me!
I’ve never told my story publicly before so it is long but I’m also leaving out A LOT…the hospitalizations, the infections, the testing, the misdiagnosis’, the medications, the weight loss, the weight gain, the NG tube, the recoveries, the scars, the insecurities, the pain, THE LONLINESS, etc. It’s a miserable journey that leads to a happy ending, should I choose it to. I have had times where I have felt entirely deflated and defeated. I have hyperventilated sobbing in total frustration and despair. I have had tears cascading into my cereal bowl while my children rally around me scared and confused, asking what’s wrong. I cry at night. However, I continually get screened for anxiety and depression, of which I have neither. I attribute that entirely to my faith. If I keep my focus on the enormity of this world and the promises that God has made, I have nothing to fear and He’s asked the question, “Can any one of you by worrying, add a single hour to your life?” It is true what my physical therapist says though, “It would be easier if you LOOKED as sick as you are.” I know a lot of us feel this way but take heart…we do have a home in Heaven and we will be singing and dancing and leaping before the Lord! Ecclesiastes 3 says that there is a season, a time for every purpose under Heaven. This is my season and this brings me to the point; I do not want to be defined by my medical issues. I want to get to a place where I feel beautiful in spite of my growing abdomen. I want to believe that being a spouse to a military man, a mother to three amazing children, a business woman, and hopefully a productive community member is enough and I want to INSPIRE others to feel the same! I may or may not need a liver transplant someday. I’m currently advocating for myself to be seen by a physician at Mayo Clinic who has devoted much of her life to studying PLD and has helped countless patients. I’m optimistic that my medical support team will help me get there…the only other choice I have is to give up and that’s just not going to happen.