Invisible disabilites, or "Walk a mile in my body"

     I have a disability placard, two canes, and a walker.  I have a pain doctor I see every couple of months, at least six prescriptions involving pain (four of which are opioid-related), three supplements specifically dealing with pain, a medical marijuana card, a TENS unit, heat packs, multiple braces, CBD topicals and edibles, physical therapy treatments, and several otc medications I use as well.

    Yet, most people have no idea how much pain I am in on a daily basis.  I only use the disabled placard when I feel my level of disability on any particular day necessitates its use if I want to get everything done that day.  Even on the days I use the placard, it is unlikely you will see me using my cane or walker even though I may badly need them.  I look like an able-bodied person to most people.

    Why on earth won't I use my mobility aids if I need them?  It seems counter-productive. doesn't it?  However, when I use a cane or a walker, I am putting weight and stress on my wrists, elbows, shoulders, arms, and neck.  I had double cervical disc replacement surgery two years ago and I have carpal tunnel in both wrists.  While the surgery means I still have the use of my arms, it also means that certain types of stress and pressure to my arms or wrists cause me pain.  To use my mobility devices to prevent pain, I have to cause myself pain.

    My physical therapists have warned me about using my braces too often or for too long.  On one hand, they will lessen the muscle strength I need to keep my joints stable to counteract the damage my hypermobility syndrome causes.  On the other, they will reduce flexibility and motion in my hands, but they do help with pain and stability if used as prescribed.  

    The other thing the physical therapists have pounded into my head is NEVER limp. Ever.  Limping causes so many long term problems, so even when the pain is bad, my goal is to not limp because while it might help ease the pain now, I will absolutely pay for it later.  Even when my pain numbers are well above 5, I still try to do my physical therapy exercises every day through the pain because if I don't I won't be able to do anything very quickly.

    All of the pain medications come with side effects.  ALL of them have noticeable side effects that impact my daily life functions.  I have prescriptions to deal with the side effects of some of my pain meds.  Most of them impact my ability to drive safely which makes dosing medications dictated by my (and the children's) day's schedule more than by my pain levels.  

    What it comes down to is that on any given day at any given point you are seeing me at between a 2 and 7 on the pain scale.  I am never not in pain.  I am rarely not in pain that actively affects me even if I am on multiple medications for it.  The pain makes me tired.  I am also never not tired.

    The thing is, I am just one person whose story you haven't personally experienced, simply one person who, from a glance, seems able-bodied and healthy.  Any person you meet could be me.  Any person you meet could have dramatic, life-affecting situations they are dealing with while smiling at you and chatting about the weather.  Be kind.

Coming to terms with being disabled, but not legally so

Disability is defined as a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits, a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions and as an impairment (such as a chronic medical condition or injury) that prevents someone from engaging in gainful employment. (from www.merriam-webster.com/dictionary/disability)

By both parts of that definition, I am disabled.  My conditions, all put together, significantly limit me on a daily basis and I have not been physically able to work a full-time job, or even a regularly scheduled part-time job, for years.  It's been a struggle as it is to educate my children, be my son's aide twice a week at school up until this year, and squeeze in as much side work as my body will allow.

This has been something that has been very hard for me to come to terms with.  I kept hoping things would get better and I would miraculously go back to the functionality I had for most of my life.  It is amazingly hard to accept that this body that I inhabit, that for years was very responsive and obedient to my wishes, that allowed me to work construction, do marathon arts and crafts sessions, and that birthed, fed and lugged around two children, now can't pick up a gallon of milk some days.

It was even harder to come to terms with when so many people kept saying things like, "Oh, it's just the aging process.  Everyone has aches and pains when they get older."  I'm turning forty-two this year.  The vast majority of forty-two-year-old women with my history and habits are not in constant pain every day, but the message of "Suck it up and deal," is a very powerful one in our culture if you are young (enough) and appear to be healthy.  

That's the other thing, I look healthy.  I'm not wheelchair bound.  I don't need a cane (most days) or slings/braces (also most days).  Generally, none of my issues show on the outside.  In fact, to try and improve symptoms, I lost a lot of weight.  Now I am more slender and still have all the health problems I did before.  People notice the weight loss, not the limp (in part because the physical therapists pounded it into my head to avoid limping if at all possible) or the careful way I have to get up and down from a seated position or the fact I often avoid carrying anything remotely heavy or how I freeze when faced with sudden change.  

The long road to finding actual diagnoses did not help the process.  It was one problem stacking on top of another, stacking on top of another over years.  It turns out in the end that many of them are intertwined symptoms rather than diagnoses on their own.  The whole process, from beginning to end, from the time I first started trying to solve some of the related health issues was at least five years.

When I finally admitted to myself that maybe, just maybe, I'm not going to get back to a point where I can work reliably, I looked into going on disability.  What I learned is that the system is rigged against people like me.  It sounds cynical, but unless you have worked enough in the past five years to have earned enough credits then you do not qualify for SSDI.  I obviously haven't because I have been disabled and trying to recover to a point where I wasn't and, on top of that, I was raising my kids, homeschooling, and acting as my son's aide on a volunteer basis, none of which counts for disability credits.  

I also don't qualify for SSI which is where I was pointed when the credits problem was explained.  To qualify for that, I would have to get divorced and get my name off one of the cars, close my business bank account, etc and so on because we make too much as a couple for me to qualify for that either.  The cut-off, by the way, appears to be $1500 a month for a couple at least in California and you can't really have any property of any value.  While that is just above the federal poverty level for a couple, we have two dependents which doesn't seem to be factored into the SSI information at all.  

Not to mention that finding ANY clear, concise information concerning requirements and income levels and all of that is a full-time job in and of itself and caused me massive anxiety attacks.  The Social Security Office wasn't helpful.  The local support agencies weren't helpful.  Even my health insurance company which has a kind of advocate for such things wasn't helpful.  It feels like the whole process is set up to make people give up.

(This was written the summer of 2018 and I forgot to publish it then.  Some things have changed and I hope to post about them soon, but I figured I should put this up in the meantime.)

Doctors, specialists, and surgeries, oh my! Or why I have to laugh instead of cry

Many know that I've had some stupid health issues going on. It's really been doing a number on my self-esteem and my ability to cope with life in general. I decided to list everything from when the worst of it started, just to get an idea of what I had actually been through. Some minor things happened before this, but this has all happened in the last two years along with a lot of upheaval in my personal life. Putting this all down and seeing it in black and white was both shocking, depressing and uplifting all at once. It's a hell of a lot to go through in two years and, all things considered, I could be a lot worse off at this point. I am so grateful for health insurance and for the doctors that would actually listen, not to mention the people in my life who have stood by me and supported me through all of this. I couldn't have done it without you.

• July 2015 - Visited emergency room with stomach pain that at the time was believed to be related to my gall bladder and was told to see a gastrointestinal specialist.
• August - October 2015 - Massive amounts of tests with the GI specialist ending with a diagnosis of possible IBS and the definite diagnosis of a small hiatal hernia.  Given no meds and told to come back if it gets worse.  At this point I had 24/7 pain between a 3-5 as well as constant nausea and with unpredictable and uncontrollable diarrhea.
• January 2016 - Visited my primary care doctor and begged him to do something, ANYTHING, to help me.  He have me a prescription for Prilosec.  Three days later I was back to normal except for occasional pain or stomach flare ups.
• March 2016 - Diagnosed with severe anemia.  Talked with primary care doctor about switching Prilosec to a medication that was less likely to block iron.  Switched to Pepcid.
• April 2016 - First iron infusion.  Started weight loss medication.
• April 2016 - July 2016 - Hand therapy for carpal tunnel and tendonitis (again... it was my third round of hand therapy since 2012, I believe).
• June 2016 - Bunion surgery.  Intense pain response. Keloid scarring.
• August 2016 - Second iron infusion.  Hysterectomy with a bad pain response and poor recovery needing additional meds and several months more recovery than expected.
• October 2016 - Surgery to remove screws and Keloid scar from my foot.  I’ve now had plastic surgery!
• December 2016 - March 2017 - Physical therapy for my foot.
• March 2017 - May 2017 - Physical therapy for my hip and posture.  Cold laser therapy.
• March 2017 - Emergency scleral banding surgery for a prolapsed retina.  Extreme pain response and an overnight trip to the ER.
• April 2017 -  Asperger’s/high functioning autism diagnosis.  Stopped weight loss medication with a loss of over 30 lbs.  Started the muscle relaxer cyclobenzaprine.
• June 2017 - Fibromyalgia diagnosis.  Started a trial of Lyrica.

Firbromyalgia is:

• Waking up tired and hurting more than when I went to bed.
• Having to schedule recovery days after any day where I exert myself at all.
• Ditto for days when I encounter any stress.
• Doctors not believing my pain levels.
• Considering a pain level of 3 as baseline normal.
• ITCHING for no good reason!
• Cold and tingling feet when it’s 80 degrees outside.
• Never knowing ahead of time how functional I will be on any given day.
• Memory issues even worse than those caused by the brain damage.
• Suddenly struggling to focus on things when I have the ability to hyperfocus.
• Never knowing when my gut will behave itself. (Bonus: This is exacerbated by the hernia.)
• Having to relearn my physical capabilities.
• Trying everything possible to get relief, but only finding a few things that partially help.
• Having to budget my spoons/spells that much more carefully.
• My skin being so sensitive that clothing hurts.
• How does pain burn???
• Relief in knowing that there is an explanation and that it’s not something worse.

They Never Told Me: Ruminations on Aging and Expectations

When I was a little girl I would roll out of bed, brush my teeth and all that, eat breakfast, get dressed (yes, in that order), and go outside and be active, or read, or build things. Other than school, little interfered with my free time. I never forgot what I was doing mid-process. I never was too sad, tired or in pain to want to get out of bed. I never thought ahead to meter out my time and energy so that I could make it through a day. I rarely worried about anything. There was nothing I couldn’t do if I tried.

The picture that is painted of adulthood for children glows brilliant with possibilities and freedom. Kids don’t see work hours and drudgery. They don’t see bills and bank accounts dipping dangerously low. Kids just see money to do things with and no adults telling them what to do or how to be. They don’t see the bosses, co-workers, other parents and community out there placing pressure on adults to adult correctly. Children don’t see doctor visits and pill caddies, medical tests and diagnoses. They don’t see doctors dismissing symptoms and insurance companies refusing medicines. Adults actively work to hide these things from them so as to not scare them about the stability and permanence of the adults in the children’s lives. Kids think everything is superheros and roses until someone grows old and grey and retires; then they go on cruises.

It’s part of the narrative we give children that falls apart as they grow up and the magic fades, along with belief in the tooth fairy and Santa Claus (I still believe though, he’s the Spirit of Giving and I dare anyone to tell me that isn’t alive during Yuletide.) Still, I wish I had known or at the very least had some awareness of how complicated it can be to be an adult. I might have enjoyed my body more while it still ran smoothly and had power and energy. No one tells you that your body might start to malfunction while you are still in what is considered the prime of your life. There is no guidebook available for the transition from capable to struggling.

Even other adults brush it aside with platitudes because everyone has aches and pains when they get older, you see. It can’t really be that bad, after all everyone gets tired now and then. Everyone gets sad and worries about things. Just cheer up and you’ll feel better. Adults are expected to suck it up and deal. We are supposed to get on with the adulting and not let things like chronic pain, fatigue, depression or anxiety affect us. Even other adults don’t want to face the reality of chronic conditions before retirement age: eyes closed, fingers in the ears, la la la la la la…

The thing is that it really is just life, but it’s a part of life that people hide. It’s not currently “normal” in modern society so we don’t want to see it or hear about it. There was a time when children grew up around birth, aging, and death. They lived life as part of the cycle, not apart from the cycle. Heck, they used to know that beef came from a cow, not from a pack at the market. Kids only know and accept what they are exposed to.

If we stopped hiding the less pleasant possibilities of life from, not just kids, but also adults, I can see life changing for the better for many people. I’m not saying to shove down children’s throats that being an adult can be difficult and that you never know when your health will fail, just stop hiding it. Stop pretending that everyone can do everything, all the time, perfectly. If it became accepted that some people just don’t have the energy or capability to be running their type A personality game 24/7/365 and we just started accepting that people will do the best within their abilities at that moment think of how much smoother life would run and how much happier everyone would be with less pressure to live up to.

Weight Loss: I finally met my goal weight

Most of my life, I wasn't the type of person who really cared about what I ate or what I weighed, although I knew that staying at a healthy weight was important. I wore what felt good and looked acceptable to me. I wasn't concerned about the number on the clothes or the brand. I knew I was healthy enough to be as active as I wanted to be. That was really all that mattered.

I had been raised with my parents thinking I was fat and trying to fix the problem, in both subtle and not-so-subtle ways. My mom just flat out told me I was fat and needed to lose weight, but also insisted I eat whatever was put in front of me and fed me way more food that I needed. My dad did things like talk about how clothing styles and hair cuts affected how people looked, or what camera angles were flattering. He also cooked in the healthiest way he could in the 80's and 90's (if you tried to eat “healthy” then you will understand how unpleasant that can be), both to help his health issues and to improve my weight. I, however, never really cared that much, beyond just accepting I must be fat. However it did train some seriously unhealthy things into my world view.

When I came home from college for a visit, I saw a picture of myself from senior year up in my allergist's office, but I had no idea it was me at first. It was a familiar person, a pretty girl, I must have known her, but she couldn't be me since I was fat and she was definitely not. When I realized it was me, I was in shock. I had never seen myself like that, as “pretty,” not as “fat,” and the two terms were definitely not meant to go together. The me I saw in the mirror had never looked slender and attractive like that. I realized then I hadn't actually been fat when I was in high school. I had been 5'7 and wore a size 10. I walked and/or biked miles daily. I was strong. I had been perfectly healthy and completely convinced I was fat. The problem was, by that point, I was decidedly on the route to officially being fat (thank you, college cafeteria food) and my innate view of myself in the mirror was permanently warped to view what I saw as fat and unacceptable.

I got engaged in 1999 and, like many women, decided to lose weight to look as good as possible for the big day. I already did martial arts, but I focused on it more and tried to eat healthier. I also joined a group called TOPS (Taking Off Pounds Sensibly) with a friend of mine and weighed myself for the first time in years. I was 205.5lbs the day of that first meeting and I knew I had already lost some weight before making it to that meeting. The last weight I remembered weighing was 165lbs and that was during my senior year of high school, five years prior.

Around that time a picture was taken of me that reinforced my decision. I had no idea I looked like that! I knew I was overweight, but I really looked fat. I took it as good incentive and that that first year in TOPS I lost 15lbs. I stayed in TOPS, actively trying to lose weight and was working construction, but I when I got pregnant around three and a half years later I weighed exactly the same weight I did at my wedding, after many ups and downs on the scale.

I was diagnosed with gestational diabetes during both of my pregnancies and learned a lot about nutrition and healthy eating. I also learned that after two bouts of gestational diabetes my chances of getting Type 2 within ten years of the birth of my second child were well over 80%. I also managed to keep my pregnancy weight gain down to an reasonable amount, around 25lbs with the first and 20lbs with the second, and lost most of it between pregnancies and a lot of it after the second.

At that point, I started having health issues, many of which I learned could be eased by weight loss, and I kept trying and trying to lose the weight while struggling with one health issue after another. I kept a food journal about 90% of the time since 1999. I stayed with TOPS for close to a decade. I tried pills, many kinds. I tried exercise. I tried teas. I tried fad diets. I tried cleanses. I tried life style changes. I read books. I monitored my calories. By 2016, I had been keeping under 1400 mostly healthy calories a day with sensible exercise for three years and I had gained ten pounds in that time. The entire time I had been constantly obsessed with food and disgusted with my physical appearance. Body dysmorphia is a painful struggle, no matter what other people see, all you can see is a warped and awful image of yourself.

A previous specialist had suggested a weight loss medication, but I didn't like the idea of just taking more pills. Between my health issues and the continued weight gain though, I decided to look into it. At this point I was sent to a nurse practitioner who specialized in weight loss. She checked me for underlying health conditions and found some. She put me on a slightly lower calorie count while we dealt with that and then started me on phentermine, a prescription amphetimine used for weight loss, because it was the cheapest option (my insurance wouldnt cover any of the weight loss medications and I didn't have much money to spare). Normally it can only be prescribed for three months, but in her program she can prescribe it for six. I had to see her monthly, have my blood pressure carefully monitored and had to have an EKG before I started on them. I was also told I could eat as few as 1000 calories a day during this time.

I was prescribed phentermine for six months, but it took almost nine months to make it through all of them due to taking a month off for the sake of my blood pressure and having to stop for awhile before and after surgeries (I had three in that time span). When I started in this nurse practitioner's program I weighed 206lbs. My highest weight ever had been around 230lbs. The lowest I ever made it to before was 180lbs. My goal weight had fluctuated through the years as well, depending on which doctor I talked to. It had been as low as 150lbs and as high as 165lbs This one told me staying between 170lbs and 175lbs should be a good healthy weight for me.

Now, after a short stint being pre-diabetic, my youngest son is nearly ten and I am very definitely not diabetic. In fact, on January 21, 2017 I hit the top of my weight range goal. I weighed 10 lbs more than when I was a senior in high school. When I get to the bottom of my range that will only be 5 lbs more. I feel as though I look “right” in clothes now, like the image I see matches the one in my mind. I don't look like I did in high school, of course, and there are some changes that came with weight loss that bother me, but I am lighter and healthier and I finally made it!

1. Keep a food diary, preferably online so it can track the calories for you. Measure your portions and write the food in your diary before you eat it. Write down everything you put into your body that has calories. You will be amazed at how aware you become of what you put into your body and when. Find problem times and/or foods and come up with acceptable alternate options. Always serve yourself a single portion instead of eating out of a bag or box.

2. There are no bad foods, just bad quantities. A slice of cake is fine, an entire cake, not so much. If you buy high quality treats and eat a single portion slowly, truly giving yourself the time to savor the flavors and textures, you might find you need less to feel satisfied than if you mindlessly shovel down cheap options. Spending the money on high quality treats can also make you value them more and try to make them last longer before you have to buy more. Restricting a specific food, unless you have an allergy, almost guarantees you will cheat and then blame your “poor will power” and yourself for it. If you want chocolate, have it! (I did pretty much every day the year I reached my goal.) Just have a single serving (or less) of high quality chocolate and give yourself the time to enjoy it.

3. Work with a doctor. There are many underlying health issues and medications that can make losing weight difficult or even cause you to gain weight. Make sure you are not struggling needlessly against your own body. Get a healthy weight goal range for your age and build from your doctor. Dress size and BMI are not the end all be all and your doctor will be able to give you a truly healthy weight goal as well as a sensible and safe daily calorie limit.

4. Taking in fewer calories than you use is how you lose weight. Have a calorie limit and try to keep under it the majority of the time. Exercise, but don't panic if you aren't spending an hour a day sweating. Exercise is necessary and good for your health, but recent studies have shown that it is not as important to weight loss as people thought. Generally the calorie burn from exercise, unless you are obsessively exercising, is too low to affect weight loss significantly. I reached my goal weight when I was the least physically active I have ever been due to two foot surgeries and an abdominal surgery, so you can't blame physical inactivity for lack of weight loss.

5. Last but most important, you are human and therefore imperfect and that is just fine! You don't need to be perfect to lose weight and be healthy. You just need to meet your goals more often than you don't. You wouldn't chew out your best friend for eating too much at a party, so don't do it to yourself. You would tell your friend that they will do better, no one is perfect, it's a process, they are doing good most of the time, and so on. Don't treat yourself any worse than you would treat your best friend.

Before

At goal weight