Category Archives: Rants

My relationship with the Catholic Church

My relationship with the Catholic Church goes back a very long time, to a time before I was even born in fact.

My birth mother, a Catholic woman herself, found herself pregnant and her one rule was the family that adopted me had to be strict Catholics. They were – dad was an altar boy, went to Roman Catholic High, and was a front row regular at weekly mass most of his life. My mother rarely attended church but lived like a nun. I would grow up eventually and learn how odd her behaviors were.

Every Sunday I dutifully attended mass, went to CCD after school to get confirmed, and assumed I’d remain a faithful Catholic all my days.

My first test came when I was 17. I met a man (22) and we were in love. He wanted to move our relationship along, but I could not without marriage. Just six weeks after meeting, we were married. Let’s just say that didn’t work out well.

Raising my children alone several years later, they were preparing for First Holy Communion. The priest said all children with one parent go here, the rest go there. We went “there” because my children have 2 parents. One might be an asshat, but 2 nonetheless.

The pastor says loudly, Ms M., you are in the wrong line, your children have only one parent. I replied Pastor, I know you are celibate but surely even you know I didn’t create these children on my own! There was some laughter, and we stayed put.

I sent my kids to Catholic school mostly out of guilt. I felt I was failing as a parent and needed to compensate. This was a mistake.

I ended up suing the school, Pastor, principal, teacher, and church. It was a personal injury suit related to a complex situation involving my daughter. This came back to bite me many times, in ways I could never have foreseen.

I got fired from a job, basically they lost their contract so had no work for me. I applied for unemployment, had a hearing. They came and said I was vindictive because I filed that lawsuit! I was only named because my daughter was a minor. And my former employers were lawyers!!! I lost (you saw that coming, huh?).

At this point I was about 28, and I became a submarine Catholic, surfacing only for Christmas and Easter. I dropped my lifelong habit of reciting the Our Father and Hail Mary as I lay in bed.

I remarried, in a non-Catholic service. That was 18 years ago – that one stuck!!

Less than 3 years later my father died, of lung cancer but it started in his prostate.

His funeral Mass was the worst day of my life. I have never set foot in church again.

I live in the bible belt, where people are as likely to ask what church you attend as what you think of the weather. I refer to myself as a recovering Catholic.

The lies and broken promises were more than I could bear.

(Please note: this is not an open invitation to try and get me into a church, your church, or any church. All inappropriate comments will be disapproved. Feel free to comment regarding your own journey however.)

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Invisible Illnesses vs Invisible People

I’ll bet everyone reading this knows what an invisible illness is. You might even have one. Or two! The guy yelling at you for parking illegally in handicapped spaces somehow has the good fortune of excellent health.

My illnesses all started out invisible, but as time went on required equipment. The first is diabetes. I’ve been diabetic for 16 years. Due to times of no insurance I have severe neuropathy. My neurologist claims he’s never seen someone with it so bad. I lost any feeling at all in the soles of my feet years ago. I started falling constantly because it felt like I was walking in marshmallow Fluff, I could never feel solid ground. I stopped driving.

I started using a power chair for long jaunts outside the house.

Then I started getting short of breath. I was finally diagnosed after two years with pulmonary hypertension. Now I’m on oxygen 24/7 and use the power chair everywhere but in the house. Suddenly my disabilities were very visible. No more ugly looks when we parked in handicapped. The world now felt I deserved it.

Gradually I noticed a change took place. Now my disabilities were no longer invisible, but I was becoming invisible.

I went to a big box electronics store looking to buy myself a new laptop. It wasn’t busy when I got there, being a summer weeknight. I headed to the computer department and noticed one other couple shopping there. A salesman came up to them and asked if they needed help. They said no thanks, we’re just looking.

I was ready to ask him a question as he was heading my way, but he walked right past me with no hello, just a minute, or even eye contact. Thirty minutes passed. The young couple got asked 2 more times if they needed help, they declined and left without purchasing anything. Now it’s just me and despite my asking them everyone is too busy to help me.

I finally found the manager, he basically said oh let me find someone.

I said no. It’s been 45 minutes that I’ve been ignored. Check your security tapes. I’ll be making my purchase online, through a different retailer. I’ve never set foot in that store again.

This kind of thing happens all the time. People look right past me as if I’m not there. I’m not someone you can accidentally not notice. I’ve even had people walk in to my chair, saying I didn’t see you. Seriously? My chair is huge and red, then there’s the oxygen hanging off the back. Pretty tough to miss.

I’ve gone from having invisible illnesses to becoming an invisible member of society. That makes me sad.

Asperger’s: Good? Bad?

You hear so often people say “their son suffers from autism” or “what a shame he’ll never be normal”. Both of these make me shudder.

Let’s start with normal. If you think someone should aspire to be normal, you’re not just saying normal is the ideal but you’re also saying that person is somehow less than. Normal is not a state of health, it’s a washer setting. I would never set normal as a goal.

On to the suffering. On my mother’s street there is a young man with profound autism. He is in his mid-20s and my mom knows him because his father takes him on walks every night. The son carries with him a plush toy that squeaks. If dad gets involved in a conversation and the son wants to get going, he squeaks it. He is non-verbal.

My mother, like many others, equates this with inability to communicate and lack of intelligent thought processes. Nothing could be further from the truth. My mother learned this when the young man presented her with a beautiful poem he had written.

I’m pretty sure I know how she reacted, this is a woman who used to yell when speaking to the doctor across the street because he was Taiwanese.

I have a son with Aspergers. He’s almost an adult now, but despite all the coping skills I taught him it can still occasionally interfere with his day. Those little hassles of daily life sometimes seem monumental to him. He doesn’t know when people are being sarcastic or facetious.

He also has an incredible focus and drive I doubt he’d have without the Aspergers. He is very smart, altho he has great difficulty with some things, like math.

He is a kind, gentle person who takes people at face value.

No, my child on the autism spectrum will never be average, typical, or normal. And I couldn’t be happier!

Hospitals!

I’ve just returned home from my 7th hospital stay since July 2008. This doesn’t include an ER visit where I wasn’t admitted.

Hospitals are a great place if you are acutely ill. You suddenly awake in agonizing pain, you fall and maybe broke a bone, can’t catch your breath.

They do a pretty decent job in the ER of getting you evaluated, tested, and even starting treatment at times.

If you need further acute care, as I just did, getting admitted to the hospital gets you cared for quickly.

I happened to need a little surgery, had to beat down a severe infection first. When you’re feeling that ill all the in and out, lights on at 4am, isn’t a big hassle, you want to be better, fast.

Even after surgery, those first 12 hours are good to have skilled care.

After that it’s all about recovery and recuperation, none of which will happen in the hospital!

You need relaxing, uninterrupted sleep. If the sound of your neighbors nurse call going on every 10 minutes doesn’t prevent it, then the frequent bright light wake up calls for vitals (please just listen, you’ll hear me breathing!) and the 5am X-ray trips will.

I still don’t know why my tests like X-rays always have to happen at 5am? They should reserve that time for acute patients, I’ll be here all day!

True recovery doesn’t start until you get home. You sleep better, eat better, and aren’t constantly worried your underwear is showing!!

I am lucky, my urologist agrees with me. I was released less than 24 hours after surgery. And I feel better already!

Mulligans

Did you ever wish you had a do over in life, back to day one?? I sure do, there’s so much I would change!

First I’d be a stronger person around my mother. She’d berate me for being a follower, having no voice or ideas of my own. On the other hand if I tried to be any of those things at home she’d smoosh me like a bug. I was welcome to my opinion, as long as it matched hers. All my ideas were stupid or idiotic.

I wouldn’t have been such a good kid. It got me nowhere. When I left home I should have gone alone and never returned.

I should not have given up *me* for everyone else. I should have taken more time for what I wanted instead of doing what everyone else wanted.

I should have splurged on manicures and professional perms and coloring.

Instead, I always made sure everyone else was happy. Still do it. This Christmas DH had been out of work 20 months. I managed to scrape together gifts for the kids. Nothing for me, not even the pajamas I so desperately needed. But hubby went on Amazon and got $40 worth of CDs and DVDs. Our movie and music collection could pay off our mortgage. Not even joking.

Now, when I finally figured I’d have 20 years to do for me, to take trips, etc., I’m stuck at home. One foot in the grave the other on a banana peel.

I have been wronged, significantly, by almost everyone ever in my life.

Yeah, that’s fair.

It’s a Miracle! Or is it?

You’ve heard it over and over again, it’s a miracle. But is it, really?

The newscaster comes on in front of a burned out house. “As you can see this home burned to the ground today. Miraculously the family of four all escaped unscathed”. Was it a miracle? Or was it really a family who took time to keep batteries in the smoke detectors and do the drills practicing monthly to get out of the house in under 3 minutes? Maybe instead of a miracle it was a family that was conscientious and dedicated to survival.

A young man learns to walk again after a tragic fall. His neurosurgeon and physical therapists pulled out all the stops and the young man did the hard painful work it took. Many would say it’s a miracle. Probably not the people who dedicate their lives to researching and learning what works.

My husband accidentally bought the big box of frozen chicken which he realized after he opened it. Our son shows up with company for dinner. It’s not a miracle it’s serendipity at best.

I have seen things others might call miraculous. Usually they were far more a combination of dumb luck and hard work.

The next time you are tempted to say “its a miracle” take a moment and consider what went into it.

A day in the life…

During the week my day starts around 7:15 am, getting the kiddies going out the door by 7:45 am. Then I take 100 units of humilin insulin, and sit and watch tv or play on the iPod. DH is sleeping.

I nod off for a short nap until 11 am. Then DH gets me breakfast and medicine (another 100 units of humilin, 60 of humilog, metformin, B12 and calcium pills).

If it’s Tuesday I’m off to the shower. I can still manage myself until I’m out. Grab the oxygen, then start to get ready. DH combs my hair, shaves my legs, and helps me get my clothes on.

After shopping we get home and I am ripped! DH gets me a drink and I sit, staying in my recliner for all but the occasional potty break.

DD comes home from school and we go over her day, homework, etc.

Another 100 units of humilin after dinner and another B12.

DS comes home after band practice. We catch up for about 5 mins then he has dinner and heads to his room to do homework and/or game development.

DH and I watch a little tv, sometimes together. Around 10:00 pm he usually makes some popcorn. He goes to bed between midnight and 1 am. I am usually up until 3 am or later.

Before bed I take 100 units of humilin, 80 units humilog, B12, calcium, metformin, and 2000 units Vit D.

During the course of the day, DH will have gotten me numerous drinks in between doing laundry, making dinner, etc.

My entire day is spent tethered to an oxygen machine of some kind. Even with that my walking distance is very limited.

I can’t do my hair or shave my legs (or pretty soon brush my teeth!) due to the pain in both hands from osteoarthritis. It is worsening quickly. I have to be very careful with NSAIDs bc I have congestive heart failure.

I spend most days battling fatigue, swelling, and pain. When the ascites is bad I look 9 months pregnant and feel it!

My kids and husband do everything they can to make me feel included, but often if it involves leaving the house I miss it.

The couponing makes me feel useful. When we get a bunch of stuff we need for free I feel good about it. Despite the fact that I can’t actually cut out the coupons, DD does 😉 But I do figure out the deals and such – stores don’t just hand stuff over LOL

My children I believe have learned empathy, and how to refill water on an oxygen machine!! Back when DH was working, DS sacrificed sleep to come out and unhook my infusions when I was recovering from sepsis. He knows how to do a hep wash now!

This is my life and I don’t see it changing soon.

PS. Did I mention I Twitter, a lot?!

Disabled and unemployed

My disabilities snuck up on me slowly, eating away at me a little at a time.

First was the diabetes. Years spend spreading 30 days of medication into 60 or 90 because of lack of insurance and lack of money slowly took it’s toll. Peripheral neuropathy is my demon. It started in my feet, sometimes they burned so bad I was afraid to stand up. In the ensuing years that has gone to complete lack of feeling which stole my ability to drive about 6 years ago but I continued to work.

I had a good job as a child support officer at the state. I had been promoted several times and also was put in charge of a new initiative for increasing collections. It was a very stressful environment, but I enjoyed the work.

I had become quite a faller however. I fell in the driveway, fell in the kitchen, the worst was falling in Walmart parking lot because I broke my ankle that time. I even fell at work one time.

I was also noticing I had list my wind. Walking to the file room and back left me panting and exhausted. Tests for why I was falling showed nothing, and eventually I wound up in a power chair.

This became a problem with my last promotion. I could no longer access the top drawer of my file cabinet and it took quite a fight to get me a second one. I heard all kinds of excuses but my favorite was that the state was out of filing cabinets!

Not long after the filing cabinet dispute I was fired. I think they were shocked at my reaction which was ok, bye. I had only had rave reviews so I knew unemployment would be a snap.

I was so wrong.

I called to file my claim and the wheels were set in motion. About two weeks later a caseworker calls, says she got all my great reviews from my employer, and why did they fire me again?

I said they told me I wasn’t keeping up, but I thought it was over the filing cabinet dispute. Upon finding out I’m in a wheelchair she says “oh you’re disabled, well then you can’t collect unemployment”.

I said why not (insert expletives)? She says you can’t work, you’re disabled. Seriously? Does she not get I just LOST a job? I said I can and have worked. She said not while disabled, and for unemployment you must certify you are physically able to work. I said yes, and I work desk jobs, not construction. Furthermore I pointed out to her that my boss, the Attorney General himself is in a wheelchair! She was unimpressed. It took three weeks of dealing with people to get my unemployment.

Are the disabled so looked down upon that even people whose job is to find you work believe we can’t???

I was very disheartened by this.

I then decided to file for SSDI, which I was immediately awarded. Felt good to tell them to take their unemployment and go rot.

I have been on SSDI for 3 years now. I have tried time and again to find work I can do but it seems I’ve reached the point of no return, as no one us willing to take a chance on me or as I was told “why spend the money to train someone when they could die tomorrow”. Thanks.

Hot, hotter, hottest!

I’ve been absent for a little bit, but for good reason. My air conditioning died last week! One night it started making funny sounds and before I could call anyone the next morning it was dead.

Luckily I have a home warranty I bought a few years ago that keeps paying for itself over and over. $41.xx a month and a $60 fee to the service tech and whatever is wrong is fixed or replaced. Got a brand new water heater 4 years ago, new elements this year.

So I call and tell them it’s urgent. I have medical conditions that are exacerbated by heat. The first company comes out and says it’s the motor and it’s our fault for not changing the filters. This isn’t true. Because of my breathing issues we buy top quality filters and change them monthly.

I called the warranty people and they were told by the first company that we had no filters in at all!!! So they sent a second company but it was late in the day on day three. He replaced the motor no problem.

It took at least 12 hours to cool the house from 94 to 74!

This whole time I had 2 ceiling fans and 3 small fans blowing on me all the time.

Also the heat brought out some funky smell in the house. We never did find the source but it was nasty…

Just glad to be cool again!

Doctor’s Questionnaires

Anyone who has seen a doctor for the first time knows the drill – forms and questionnaires to fill out.

But it’s the questions that bother me. The ones they don’t ask.

I was lucky enough to see a wonderful guy today, Dr. Quick. If there was something horrible wrong with me I’d want him to be in charge of my care.

Dr. Quick is a hematologist, which is really code for blood oncologist. Because if you have a blood infection you see an infectious disease specialist.

So the appointment was already scary. Then the questionnaire. It asks the usual stuff, past surgeries, do you drink or smoke, etc. Luckily I get to skip the page on family history since I’m adopted.

Then the form spends ALOT of time asking about living wills and advanced directives. Do you have them, who is in charge, can we have a copy, etc.

What these forms don’t tell the doctor is who you are, what is your proudest moment, what do you still hope to accomplish in your life. Not even how you feel about your current situation. Or what your situation is. On the edge of homelessness? Depressed? Scared?

These are all important facts to know about the patient when determining treatment. We are people, not milligrams or titered doses…