Friday, July 20, 2018

How I am not myself:

Hello friend,

Please try to bear with me and read through the end, if you will. It's been a long time since I have written anything of substance, and I fear that I will be somewhat long winded and rambly for this one.

In my early 20s I started to have severe regular migraines. They affected my vision, caused me to be physically ill, seemed immune to over the counter pain medications, and sometimes lasted for days at a time. I had good health insurance through my parents, and saw a GP, followed by several specialists. I visited a neurologist. I had ever possible test, and they found nothing wrong with me. The Neurologist prescribed me Imitrex, an RX migraine medication, which caused me even more severe nausea (not fun when you already have extreme pain) so I stopped taking the pills and looked for other options. I spent the better part of the following five years trying to learn homeopathic methods for relieving my pain. I had some success with modifying my diet, installed blackout curtains in my bedroom, put heat on the back of my neck and ice on my forehead, and soaked my hands and feet in scalding hot water to bring the blood down from my head. While some of those 'treatments' helped a little, none of them prevented the onset of the headaches. 

When I first started dating my husband, and he enrolled in massage school, I had an incredible discovery that certain types of body work could eliminate a debilitating migraine almost completely. I found a new GP, went to the doctor, and told them I was pretty sure my migraines were being caused by excessive muscle tension in my neck; the doctor agreed and wrote me a prescription for physical therapy. At my intake appointment, my new PT called all of the other doctors into the room to examine me for secondary opinions. At 25, they told me I had the body of an 85 year old woman, that they had never seen a case like me, had no idea how it had happened, and that I was holding my head up entirely with superficial muscles, not the muscle groups that should have been engaging. I felt so embarrassed that I completely stopped talking to anyone other than Dustin about what was happening to me.

While I loved my physical therapist, the visits and workouts were awful. Everything hurt while I was doing it,  hurt even worse after the appointment, and before I saw any over all improvement, my insurance ran out and I could no longer afford physical therapy. I tried to continue doing the at home workouts, but they cased so much additional pain and never resulted in any relief, that I eventually abandoned them completely, and tried to just focus on being as healthy and mobile as possible. I eventually left my 'day job' and for seven years did not see a doctor other than my gynecologist.

Please understand that while I think that the affordable care act was an incredible gesture, it did not provide as much as it should have or needed to to individuals without employment based healthcare. While we have always been insured, most years the insurance we can afford covers almost nothing (sometimes not even preventative care) and that specialized doctors and treatments are not even an option for us. For most of the past five years our monthly premium eats up all of our extra money so that we cant afford to pay for medical visits that would help us reach our deductable. (For those of you who have good insurance and don't know what I'm talking about, in most cases nothing is covered at ALL until the deductable has been met).

At this point you're probably wondering why I'm going on and on about headaches I had years ago, and how this is possibly relevant right now. Let me explain; I HATE asking for help, I do not like NEEDING help, I do not like showing any weakness, I can't stand being a burden to the people around me, and I will, and have, gone to incredible lengths to pretend I am fine when I'm not. 

For the past two years, I have never NOT been in pain. I can't really pinpoint what started first, or specifically when, and I certainly don't know why. I've been hiding it, and lying about it, and trying to deny it for years. Last September I did an outdoor festival in Ferndale, and it was almost a hundred degrees. I had to do load in and load out by myself. I didn't get enough sleep, and I got too dehydrated. I was staying with my mom for the weekend, and ended up coming clean to her about what was happening when she found me on the bathroom floor throwing up because the pain in my arms, shoulders, knees, and feet was so bad. I couldn't get out of bed for four days after I came home from that show, and never fully recovered.

When I get out of bed int he morning, and stand, my feet hurt, my knees won't bend. It takes me twice as long as it should to climb stairs. Random muscles all over my body that you wouldn't normally notice twitch and spasm at random.  My right shoulder has crippling pain and loss of mobility. My right knee make and the right side of my jaw make a terrifying spongy sound. I can't open my jaw all the way, and it feels like there's something rotting in my hip joints. If I'm lucky, I get one day a week without a headache, some days they're literally blinding. Some days I throw up from pain and can't drive, cant sew, can't read, can't look at my phone. I had to stop doing yoga because it was causing too much pain, tried pilates and it caused too much pain, reached the point months ago where a 20 minute walk would debilitate me for two days afterwards. Wearing shoes hurts my feet. Wearing a bra causes all of the muscles in my neck and shoulders to cramp, resulting in debilitating pain.

I am literally crippled, and have been hiding it from everyone I know for as long as humanly possible. The handful of people I told, I wasn't honest about the extent of the damage. I was afraid of being a burden to the people around me. I was afraid of acknowledging the reality of what I was going through. I was afraid everyone would think I was crazy, or that it was psychosomatic (It's not), and there was nothing I could do, because I couldn't afford to go to the doctor. It was a compounding problem that the worse the pain got, the less I could work, the less money I was making, and the farther I got from the option to seek the professional help that I desperately needed. I've been hiding in my house for the better part of a year avoiding social contact because I had passed the point where I could successfully hide what was happening to my body. I didn't show up for things I said I would go to because my pain levels were too high, or I couldn't put on normal clothes. I didn't visit my lifelong best friend after she had her first baby because my back hurt too much to drive comfortably and I was afraid I wouldn't be able to hold the baby for more than a few minutes at a time and she would know something was wrong. I didn't want to bother her or anyone else, so I stayed quiet.

When Anthony Bourdain died, I had a total emotional meltdown, partly because I loved him and was saddened by his passing, and partly because I watched as so many people I knew posted online about how shocked they were that someone who seemed totally fine could end their own life without anyone seeing warning signs. It was earth shattering to me to realize that I could draw a direct line between someone else who felt like they had no options and no way out, and myself. That if I continued to feel the way I have been, it could just as easily have been me making the choice to escape. I felt heartbroken, physically crippled, and trapped in my own broken body and mind.  As I scrolled through my Facebook feed and watched all of the people saying 'Ask for help if you need it' 'you're never alone' 'I'm here for you if you need me' I couldn't think of a single person I felt like I could call. The week Bourdain died I actually wrote and deleted a post like this three or four times, but couldn't bring myself to go through with outing myself. 

I feel totally comfortable saying that I've dealt with depression off and on for most of my life. I've lived through some traumatic events, terrible relationships, and used to experience really severe socially anxiety (though I think I mostly grew out of that one). I believe it's fairly normal to have at least some of those feelings, and I've never felt like I was in danger of doing any sort of harm to myself, or like I wouldn't eventually be able to navigate my way to a more even emotional keel. But how I feel right now is different. I've been feeling completely isolated. I can't wear the clothes that make me feel like the person I want to be, or make the art that I feel like expresses myself, or take the trips that feed my soul. I do not feel like myself at all. I feel physically incapacitated and emotionally crushed, and I've been struggling with these feelings long enough to be worried that I can't dig myself out of this hole on my own. I feel like many of the relationships in my life are dissolving, and I'm watching my business slip away because I can't do what I need to to hold things together.  I've got the BIG SADS and I don't feel ok.

The first week of July I came home from a trip to visit my parents. Dustin went to work and I sat on the couch thinking about what I could do to help myself feel better. I was trying to work through whether or not I should make this post, and if I did, what I would say when my mom called me from the hospital. My dad had been admitted with a stomach ache, and left the hospital two days later with CT scan results that showed a tumor in his Pancreas. Ten days later he called me with the results of a biopsy and a diagnosis for stage 3 pancreatic cancer. The same cancer that killed his mother (my maternal grandmother) at the age of 53. 

In the past month I've learned a lot of (pardon my 'French') really scary shit about pancreatic cancer. If you'd like, you can google it yourself, but I'll skip that here and leave you with the bottom line, which is that there aren't really 'survivors' of pancreatic cancer. Those of you who are lucky enough to know my dad, or have met him, know that he is THE BEST DAD EVER. He is a magnificent human specimen that survived being run over by a Buick as a child and pronounced dead. He survived Vietnam. He has spent half of my lifetime working out every day to stabilize and strengthen the muscles around the seven ruptured discs in his spine that the doctors told him would leave him paralyzed within 3 months, fifteen years ago. Half of the paintings and pictures in my parents house were painted or taken by my dad. He went on every single one of my childhood field trips with me. He bakes bread twice a week and has nearly 20 different types of berries and four high producing fig trees in his garden, and there is no one else on the planet like him.

On Monday, he will start chemo therapy, because the tumor is too large, and in the wrong place, and cannot be operated on without being decreased in size. In six weeks, if the chemo has not decreased the size of the tumor, the only option will likely be palliative care. I could tell you all of the numbers, the percentages, what the 'best case scenario' might be, but I won't. Even the best case scenario is too bleak to put here and have to look at in print.

After 9 months of waiting lists I saw my new GP one week ago to talk to her about chronic pain.  She palpated my muscles and confirmed abnormal tension and atrophy. she manipulated my joints and confirmed abnormal grinding, damage, and lack of mobility. She did a series of blood tests and told me she couldn't help me, and that I needed to see a rheumatologist, which will not be covered by my insurance. The blood tests ruled out diabetes, thyroid issues, and rheumatoid arthritis, but showed insanely high levels of a chemical that is a marker for severe muscle damage. I've gotten far enough to have proof that this is not an imagined illness, but the rheumatologist can't see me until November. I don't know how to manage my pain, manage my business, and manage the soul crushing stress and depression I'm dealing with along with the possibility of losing my father far sooner that I ever would have been prepared for.

I don't know how to make this post be better written, because I don't know what to write. I don't know what to say, or what to do, or how to move forward. I don't know who to talk to, or how to ask for help, but here it is. For those of you that said 'you're never truly alone' I feel truly alone. For those of you that said 'if you're not ok, speak up' I'm not ok. I'm speaking up. I don't know what I need, or how to ask for it, so this is the closest I can get and the best I can do. If you love me, now is when I need you.


  1. Amber, please message me. You have no idea how many bells this rang for me. I MIGHT be able to help.

  2. I bought lovely items from you a few years back that have brought me great joy. I don't know how to help you, but I will pray for you. I am sorry for your pain.

  3. I am experiencing the pain and muscle atrophy that you are talking about from a brain tumor removal I had in December. I can relate to not feeling like there are options. I’m so sorry that you’re going through this and pray that you find a way to pay for the specialist.