Don't Judge the Book by Its Cover


Don't Judge the Book by Its Cover

I wrote this for people to read when they don't bother to think about the lives of spousal caregivers, or those who care for their sick loved ones.

Think about this:

"You don't look sick"
answer: "No, I don't, maybe not to you"

It's hard to explain to someone when they have no clue.
It's a daily struggle feeling sick on the inside while you look fine on the outside.

Just to name a few:
Panic Disorder
Crohn's Disease
Thyroid disorder
Graves Disease
Cushings Disease

but they are so many others.

My husband was born with hydrocephalus and spina bifida, unless you see him without a shirt, you won't see his scars on his back and stomach, or unless you look at him from the back you won't see the scars on his neck or head, and see under his baseball cap he wears in public, you won't see the scars on his skull, but the sores from psoriasis are very visible.

His TBI was caused from when the fluid built up around his brain and he had mini strokes in 2007, we couldn't find a neurologist or neurosurgeon who would see him or treat him with no insurance until 2008.  What we thought were heart attack like episodes were really strokes from his hydrocephalus build up and his shunt had broken in half.
After his brain surgery in Aug 2008, the psoriasis hit with a vengeance, and a series of other issues came about.
The lupus has started to impact his organs and his liver and kidneys are causing problems.
He can't mow the lawn or be in extreme heat, can't lift much of anything over 5 pounds, can't stand for long periods of time, or walk for extended periods, if so we have to stop and rest, or he has to have his cane.
All these are internal problems, you can't see it on the outside.

He tried to mow the lawn in Mid-march and I came home to see him outside and he had mowed half the lawn and he had a seizure right after i had gotten the kids inside, luckily they didn't see it, and I was able to get him sitting down before he fell on the concrete.

Now from the seizure he has uncontrollable hand tremors (hand shaking), and they have to see if he has graves disease, which would explain several things in his symptoms.
His RA and Psoriatic arthritis are getting bad, his ankles and lower legs and feet are retaining water/swelling. He loses function on his right side when the muscle and joint pain cause him to go numb, and he has water pockets in between his knuckles on his hands.

The Psoriasis is from head to toe on him and the itching is unbearable for him, he has insomnia, and if he does sleep it's from taking a benadryl that knocks him out, but he wakes up in the middle of the night with high fevers.

His Blood pressure is too high, but his pulse is too low, and his cholesterol is high, his liver functions are going nuts and his kidneys aren't functioning properly. the only two organs right now that are acting okay are his heart and lungs. His EKG came back okay in late March.

He tries to help with the dishes on days his hands aren't too swollen and he has the strength to do lifting or up and down frequently.
He has his good weeks/days and bad days/weeks.

The best he does now is sits in a chair and sorts laundry or puts it in the washer while sitting in a chair.
His spina bifida, which he was born with, co-insides with his hydrocephalus so that is the lifting issue and causes the major back issues.
The hydrocephalus and his shunts causes the massive headaches and he has a blown pupil, and is passed the beginning stages of glaucoma, so can't drive at night.

He is at home all day everyday since we only have one car and tries his best to care for our four-year-old daughter when she is not at pre-school (tue, wed, thurs) she goes from 8:30-11:45.
He sits to make her lunches, and can't do much active playing with her, but sits on the grass with her outside or sits with her in the living room to play.

He's tried getting help through the Dept of Aging and Disability Services, but they never return calls or follow through, and we are still with the lawyer for social security disability. We now wait for my husband to go in front of an appeals judge for his disability.
He would love to be able to work, but no one will hire him after being sick since 2005, even with his Bachelors degree and his soon to be Masters.
He has short term-memory loss, so everything has to be written down, and he could faint or have a seizure at anytime. His equilibrium is off from his brain and spinal defects, and he has so many limitations, along with the Psoriasis that can't be hidden on his face, and people see it, and sadly they judge, the arms and neck can't even be hidden through long sleeves because heat makes it worse, so long sleeves will make him sweat and the itching worse.

It's just horrible seeing him suffer when he has such a good personality and should be able to enjoy his life as a 34-year-old father and husband, but he cannot.

Be careful not to say, "But, you don't look sick" to anyone, be it the person who is sick, or the person who is the caregiver.
Don't judge the book by its cover, no one knows what happens behind closed doors, or what people go through watching their wife or husband be disabled/be chronically ill, etc.

No one knows what it's like to have a child with a disability and watching what they suffer through as well.

This is just my story/my husband and kids' story, and there are millions of others out there.

Share this with those who might not consider what comes out of their mouth before thinking how it sounds or comes off to other people.