Category Archives: medical

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!

Depression

Depression I’ve heard described as a deep sadness. For me it’s more than that. I’ve felt plenty of horrible sadness in my life, most notably when my grandfather and father died. But as sad as I was, I was not depressed. Grandpa was 100, and dad was finally breathing easy 😉

I remember the first time I told a doctor I was depressed. I was in my mid-20’s and he told me I smiled too much to be depressed. He even brought in another doctor to see my smile. What neither of them knew, or took the time to find out, was that that smile was permanent and as fake as the waiting room flowers. I grew up in a household where if you weren’t smiling (except for mom, she never smiled) you were hounded about what was wrong, and geez louise if you actually said you’d be beaten down for being ungrateful, etc. So I smiled.

I’m 49, and I still catch myself smiling out of habit.

Somewhere in my late 30’s a doctor took me seriously about being depressed. He put me on Paxil. Then I went to counselling, which I wasn’t ready for. At my first session I told her I already know its all my mothers fault so what’s left to discuss? That was my last session,

I stopped the Paxil shortly after. In the intervening years I’ve been diagnosed with PTSD and GAD. I was on Lexapro for awhile, dropped that and now I just take Xanax on an as needed basis.

Some days though I’m just the seeds at the bottom of the pickle barrel – nothing can pick me up. Usually it’s bc of one of my medical conditions. Either my blood sugar is going high for no reason or breathing is difficult.

My family has as much patience for my depression as those first doctors. My husband has even asked what I have to be depressed about, after all I don’t even have to work. Kind of shows you his mind set :/.

I don’t want to go back on medication and counseling is clearly not for me. Not sure how I’ll handle this.

Let me be clear in that I am depressed, NOT suicidal. I’m too damn lazy for that ;). Besides I’m fighting every day to see the finish line with my last two kids grown up. Some days I do wake up thinking damn, another day I have to slog through. But I slog…

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!

Why do we have co-pays?

If you’ve ever been covered by a PPO or HMO for your health insurance you are familiar with co-pays. Charged on everything from doctor visits to ER visits and sometimes even tests like a CT scan, this is money you are typically out of pocket upfront for those services. But how did they start?

Many years ago (wow, about 30 years now!) a company was formed called US Healthcare. They were the first HMO, and they had just a small office in Willow Grove, PA. I grew up in Willow Grove and ultimately ended up working a while for US Healthcare.

Back then we only covered a region of PA/NJ, but they wanted to expand. Day after day I was on the phone with doctor’s offices, extolling the virtues of being a provider. After the law was passed that if a company offered traditional insurance they must also offer an HMO was passed, this got easier.

The way an HMO works is the primary care doctor gets capitated (or paid per head) every two weeks for each patient. The amount they got paid was based on a patients likelihood of utilizing the doctor’s office. This was determined via a matrix set up based on research. Children 0-5 and people over 65 were capitated at the highest rate because they used the most services. Men age 18-35 were capitated at the very lowest rate because they so rarely see a doctor.

Originally the patient was only responsible for paying any premiums their employer didn’t cover. However few people trusted the system. They felt that if they didn’t pay the doctor, they would get 2nd rate care.

Because of this US Healthcare instituted a $2 copay for primary care visits and a $5 copay for brand name prescriptions. US Healthcare became wildly popular and grew quite quickly. Eventually they merged with Aetna.

So you can thank those untrusting souls back in the 80’s for your co-pays today!

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?!

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…

Doctor’s offices

I moved to Texas in 1998, and at that time my medical needs were fairly limited. I saw a doctor once a year or so and took one pill a day pretty much for my diabetes.

We moved to Lubbock in 2000 and over the years my need for medical care has risen exponentially. In many cases, however, my needs are not being met.

Back home (Pennsylvania, Philadelphia region) access to medical care was unfettered. Your doctor’s office was open at 7am until often past 10pm, plus long hours on the weekends.

This is not the case in Lubbock. It’s a rare office that has weekend hours at all, and weekdays are generally 9am to 5pm, although on a Friday you’ll often find the doc gone before lunch.

In addition, they must have a special training facility for their staff – mostly front desk people. This training teaches them to be surly, leave patients on the phone on hold forever (ie the cardiologist office left me holding for 11 minutes), and to insulate the doc from providing patient care.

That cardiologist above? After the 11 minute wait I explained I couldn’t make my appt bc my pipes froze. I called back a few hours later and was told as a no call no show they would not reschedule me. Then my GP office calls and says the cardio office claimed I cursed them out. Seriously?!

I had a doc who kicked me off his service bc he couldn’t solve/cure what ailed me. Mind you, I was on the phone with their office in tears from the problem when they said find someone else.

If you’ve read my blog, you know my endo does nothing but call me a liar. Then he hides the truth from me about my condition but that’s okay?

Unfortunately things don’t improve when you are in the hospital. Mistakes, misdiagnosis, even had a doc say I was wasting their time and money!!

If I had the ability I would move away from here sooo fast! I even get harassed about bills. I have an awesome Medicare Advantage plan but my docs keep trying to overcharge me!

My only solace I guess is after I die here due to more medical mismanagement my family will have grounds to sue…

The art of dying

Dying is a lost art. If we know what ails us we spend every waking hour seeking a cure, or the most cutting edge treatments if no cure is to be had. In that search we give up time, precious time that could be spent with loved ones or doing things that were put off because of family and responsibilities.

There is nothing inherently wrong in trying to extend our lives, in fact it is probably coded in our DNA. But it is not the only, or necessarily the best, choice.

I have my share of ailments, and am about to get diagnosed with another I’m sure. I have no interest in tracking down treatments that will leave me drained and feeling sicker than the actual disease.

Don’t go off in a panic, I’m not suicidal and am probably too much of a weenie anyway to ever do such a thing.

But doctors and others don’t know what to do with people like me. They send us for psychiatric counseling because surely we are nuts!

I am not nuts, and I’m not suicidal, but not waking up would not completely piss me off. I take insulin for my diabetes and oxygen for my pulmonary hypertension but more intensive, extensive treatments I’ll take a pass on.

I’ll take what good days I get, and spend them well. That’s dying well to me.

The diagnoses of my life

It’s beginning to seem my lifea is one medical issue after another!

Growing up I had migraines and asthma, as well as a bum knee courtesy of a car accident. Otherwise i was generally healthy. The asthma wasn’t even bad – I just had to avoid dust and allergens.

The last time I was pregnant I developed gestational diabetes, and about a year to the day I developed diabetes type II. Honestly, I took my pill in the morning and forgot about it.

The long-term diabetes has since caused me to suffer many neuropathies which have interfered with my life.

If you read my blog you know i was diagnosed with pulmonary hypertension awhile back. This has caused me a lot of problems, including needing oxygen constantly.

I had sepsis and bacterial endocarditis last January and was in ICU for a week!

Recently my doc took blood (this new doc is a total vampire) and apparently there is a big problem because I need to see a hematologist. Mostly what they deal with are cancers of the blood, so once again I am concerned and worried.

I am running out of space on my emergency bracelet for more diagnoses….