You Know You Have a Chronic Debilitating Disease When…

You know you have a chronic, debilitating disease when…

You miss your job and grieve over having to give up your career – often when you’re quite young. Some of us spent our last days in tears because the job was so hard and painful, but we kept pushing because we’ve heard so often that people on disability are “lazy” and other hateful comments. Often from friends.

Nurse

 

You spend all of your disability check on insurance and medicines – many of people with disabilities struggle month to month because the cost of insurance, doctors, and medications bankrupt them. After two years of being disabled (according to the Social Security Administration) the person qualifies for Medicare. Medicare doesn’t pay for any medications, and the person must pay twenty percent out of pocket. Most states don’t require supplemental policies to cover the disabled. Most, however, can obtain Medicare part D to help with the cost of medications, but it’s a guessing game to figure out which policy to choose that won’t leave the person in the lurch on the cost of expensive medications.

 

Your house looks like a medical supply store – for the days when you’re having problems with your knees or hips, you have a walker or a cane. Most of us have both. Some days you chose one, and other days you must choose the other one.

 

And then there are times when neither a walker or cane is enough… Many of us have wheelchairs and electric scooters stowed somewhere. If we go anywhere that involves much walking, the cane or the walker’s just not enough. Then, when we use our scooter in places like Disney, we hear snide remarks about being lazy, because of course, we don’t “look” disabled. What does disabled even look like?

Scooter

 

We spend so much time with doctors, you’d think we would have a great relationship with them… And many of us do with some of our doctors. Two of my many doctors who listen to me and act upon what I tell them. They don’t ignore me. Unfortunately, that’s not always been the case. Before I was diagnosed (which by the way, can take YEARS because the symptoms are nonspecific and often mimic other diseases) I was told to try things like “a high protein diet” for the fatigue that I constantly complained about. It’s hard for us to trust a new doctor. If we’re told we need to see a new specialist, it strikes fear into our hearts because we recall all of the previous times when we had doctors who treated us as though we were lying. I mean who would lie about the symptoms we have?

doctor button

 

We take enough pills to choke a horse – and often times we take pills to counteract the side effects of the pills that we take for our disease. Of course, we can opt not to take the pills for our diseases, but that leads to another set of problems.

Pills

 

Many of our medications are given through an IV, or we must learn to self-inject – next time commercials for Enbrel, Humira, etc come on TV, check out the drug. The lists of side effects are endless, the method of administration isn’t fun, and they cost a small fortune.

shot

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We’ve been xrayed, MRId, and CT scanned from stem to stern…  Since most of these diseases can affect any and every part of us, we’ve been subjected to all sorts of testing. Including spinal punctures, blood tests, nerve conduction tests, etc.

hand xray

 

Nice rash! We develop very weird symptoms. Often, they stump the doctors. We have flu-like symptoms most of the time – fever sometimes as high as 102), our brains are foggy at times preventing us from making good decisions, remembering appointments, etc. We have a pervasive feeling of being unwell. Sometimes the symptoms are actually a sign of an additional disease taking up residence because autoimmune diseases like to come in groups.

rash

 

Some of the diseases affect the spine – but those of us with the diseases that “don’t” affect the spine, know better. We’ve developed multiple disc herniations, etc over the years. Recent studies have shown that we were correct all a long. Many of the Autoimmune Diseases that doctors originally told us won’t affect the spine, recent research has proven they affect the joints and the discs of the spine.

spine

And the top way to know you suffer from a chronic, debilitating disease? You wake up more tired than when you went to bed the night before. Family and friends wonder what your problems because you’re late for church, work, school, etc. Your body is so exhausted, it doesn’t want to move. You feel like you could sleep until the end of time. Then, after you’re up a while, you hit your high point which lasts a couple of hours if you’re lucky.

Tired

 

You Know You Have an Autoimmune Disease When:

Woman

You know you have an autoimmune disease when:

  1. You wake up feeling more tired than when you went to bed the night before. Tired
  2. You take more meds than your 90-year-old granny.Pill bottles
  3. Your house looks like a medical supply store. You have shower seats, grab bars, wheelchairs, scooters, walkers, canes, etc because some days you’re lucky enough to only need the cane, but other days you need the wheelchair.Wheelchair
  4. You get wonderful advice from total strangers. Like: Have you tried: (insert whatever fad is in style right now, Aleve, exercising more, prayer, etc.; If you had more faith, you would be healed. My brother, aunt, mother, uncle, etc had that and did (insert wild advice here like drinking pickle juice or taking vinegar every morning.Pointy Finger
  5. After paying for your meds every month, you’re too broke to have fun…not that you have the energy to do anything fun.Meds/money
  6. People give you dirty looks or even make hateful comments when you park in a disabled parking space because “you don’t look sick”.file0001548736253
  7. You’re convinced blister packs are the work of the devil. file000237973770
  8. Brain fog is very real. It causes you to do some weird things like forgetting to turn off the stove. Miss appointments, etc.file000894312228
  9. When you rent a mobility scooter at a theme park, you get strange looks and the occasional eye roll.Scooter
  10. You have a love/hate relationship with steroids. They make you feel better, but they cause incredible hunger and weight gain.Ape
  11. Your hands swell and turn red with a flare making you nice and colorful.Hand
  12. If you had a ribbon on your social media profile for each disease you’ve been diagnosed with, there would be no room for your photo.file0001328197195
  13. You’ve learned to overcome that irrational fear and become an expert at giving yourself shots. file000381741411
  14. Most of your friends are now online friends who have the same or similar illnesses because they understand you.Giraffe