A few months ago, fellow spoonie blogger, Julie Ryan, provided me with an opportunity to share my fibromyalgia story. It felt good be able to share. I had close friends tell me that there were aspects of my story they didn’t know. Because of this, I wanted to give others the opportunity to tell their stories.
Today, I want to introduce you to Elizabeth. Elizabeth and I actually attended the same high school, she having graduated a year ahead of me. While we had friends in common and knew of each other, we never really had any significant interaction back then. 9 years ago, we reconnected through blogging and social media. She lives in New Jersey with her boyfriend and adorable Yorkie. Elizabeth, as an aspiring writer, is blogging her way through the Writer’s Guild of America’s 101 Greatest Screenplays over at http://mybloodisactuallyink.com You can follow her on Twitter @zabe528
1) So, what ails you?
Lupus! Contrary to popular belief, it is sometimes lupus.
2) When did you receive your diagnosis (diagnoses)? How long was it from the onset of symptoms before you had a diagnosis (diagnoses)?
I was misdiagnosed with RA (rheumatoid arthritis) in the summer of 2001. My index and middle finger on my right hand froze, and I thought it was just a salt imbalance. I didn’t have insurance at the time, so it was a month or so later before I could see a doctor. I received the correct diagnosis of lupus in April of 2014. To put it into numbers, the RA factor in your blood can be 0-14 and you’re just fine. Mine was 1, just about as low as you can get. The lupus titer can be 1-40 and you’re normal. Mine is 2,560. That’s not a typo.
3) How does your illness manifest itself, (symptoms)? Does it or has it manifested itself in a way that is atypical? Did that delay receiving a diagnosis and/or does that require that you receive different medical treatment?
The number one way it affects me is my joints. It’s most obvious in my hands and knees because they do not bend like normal joints should. I can’t even begin to make a fist in either hand. I’ve lost range of motion in many of my joints and worry I may never get it back. My skin is also super sensitive to the sun. I’ve always been pasty, but I’ve never been sure if my skin is sensitive because I avoid the sun, or if I avoid the sun because my skin is sensitive. I do also get “lupus brain” where everything is foggy. According to my GP, everything else that could be affected is just fine. Lupus is pretty much impossible to call typical. You can have three people who test “positive” for lupus and have not a single symptom in common. The delays in my treatment have been somewhat self-inflicted. I had a few bad doctor experiences and quite a few gaps in insurance coverage.
4) Have any unconventional or naturopathic treatments worked for you? What are they?
I’ve noticed that a very natural diet helps me. I’m finally breaking my attachment to most processed foods and grains, and I’m feeling better for it. I am excited to try acupuncture. I’ve read amazing things about it. Because my diagnosis is recent, I haven’t met with my specialist yet to determine exactly what conventional treatments to try, but I’m definitely open to alternatives if they don’t work.
5) How has your illness affected your daily activities? How has it affected you long term? Are there things you used to love doing, but can no longer do?
I’ve built my life around my disability. I work with computers, which is both a blessing and a curse. There is no impact on my joints and I’m inside all the time, but I can end up sitting for fourteen hours a day. Due to ROM issues with my wrists and knees, I can’t do some simple things, like get off the floor on my own. I have to kind of throw my upper body onto a chair, wiggle my way to a sitting position, then stand. It’s as sexy as it sounds. I often have to use special tools to open jars, and sometimes even then have to ask for help from my boyfriend. I look forward to doing Pilates again, as soon as my specialist clears me, and maybe some hiking. I used to love running through nature but now can’t risk falling down or twisting my ankle.
I will also say it’s tough for me to know where lupus ends and “being out of shape” begins. I have difficulty bending over to tie my shoes. How much of that lack of flexibility is just my extra weight and overall “out of shapeness”, and how much of it is lupus? How much of my being out of shape is due to lupus issues? I’ve been eating better and working out more, so hopefully I’ll be able to separate my weight issues and lupus issues soon.
It’s also stopped me from starting my own fight club but… we don’t talk about that.
6) How has your illness affected your mental health?
Imagine it’s a rainy day and you just don’t feel like doing the dishes or laundry. Now imagine you feel like that almost every single day about everything. I have had days where I stay in bed and feel like “what’s the point? I’m a cripple who will never have a normal life, so I may as well just stay here until I die.” It’s never that I want to commit suicide or end my life. I love life. I’m totally in love with all the amazing things in life. I just sometimes get so emotionally or physically drained that sleeping for a week feels like it should be a genuine option. Or that dealing with normal things like bills and working out just feel like too much effort.
Also, it’s very easy to feel bitter because I didn’t do anything to deserve this. There’s nothing to go back and change. It did get this far due to my inaction, but the actual disease itself is just my body being wonky. So I sometimes feel irrationally betrayed, but I also know it’s no one’s fault.
7) How does your illness affect your family and friends? Have they been supportive?
My family and boyfriend have all been extremely supportive. If we’re at an amusement park and I need to sit for fifteen minutes, we sit for fifteen minutes. If I need my boyfriend to move furniture or pick up heavy boxes for me, he’s there and doing it. They badgered, I mean, supported me into trying new doctors (see #12). So I have to thank them all for pushing me.
8) What do you wish people understood about your illness?
That it varies from day to day. I can do a thousand things for myself one day and am completely useless the next. So I’m not faking it when I’m having a flareup; it just affects me more sometimes than others. And that can be because of the weather or something I ate or because the moon is in the seventh house. As so many people with chronic issues experience, the phrase “but you don’t look sick” makes me want to rip people’s heads off. I have a hard time not responding with “oh, if you can’t see physical evidence of my illness, I must not be actually sick. Silly me!” People also don’t understand that I’m sitting with them and having a conversation that’s interesting… and then my eyes seem to go blank because “holy crap my knee hurts, be cool, be cool, don’t cry, keep talking, ask them to repeat what they just said, that’ll buy you some time, I wonder if my doctor would just cut my knee off for me.”
9) What do you wish people understood about you in light of your illness?
I recently read the phrase “don’t let your struggle become your identity”, and it made me choke up. I’ve forgotten that I have this disease, and that it doesn’t have to define every single part of my life. Affect it, maybe, but not define it. So I wish people understood I’m a smart, caring person who is occasionally cursed with the attention span of a goldfish and the physical strength of a two-hour-old kitten. I love to read and write. I love when code works correctly. I love talking with passionate people. I love to play board and video games. I just sometimes need to cut myself from everything that takes any effort and remember how to function.
10) What has pissed you off the most during your journey with this illness?
Oh, definitely the whole “you don’t look sick” thing. I’ve gotten it from a doctor, and that made me stop going to doctors. It’s very upsetting to suffer and be told your suffering doesn’t exist.
11) What has been the most helpful?
Forgiving myself for not being able to do all the normal things I want to do. Sometimes I’m too hard on myself, and then I swing the other way and end up being too easy on myself. It’s helps to remember to push myself but not too far. That is by no means simple.
12) If you could shoot one of your doctors/healthcare providers out of a cannon because of their asshattery, who would it be and why?
I love this question so, so much, because I’ve had so many people act like “going to the doctor” just magically fixes everything. I didn’t seek care for a long time because of bad doctors. Probably the worst was one whose name I’ve forgotten because I only went to him once. I waited four hours after my appointment time for him to see me for ten minutes. He didn’t ask about my weight, how I eat, anything. I mentioned I’d been diagnosed with RA, and he rolled his eyes and wrote me a prescription and gave me a few samples, and walked out the door. Now I know doctors must have some of the shittiest days, but I couldn’t stand to be treated like that. I didn’t see another doctor for years because I was convinced they would all treat me like that.