Matters of the Heart

For the past few weeks, I’ve felt like crap. My heart has been skipping along, enjoying itself, while the rest of me was dizzy, stuttering, and tired. Tests take a while to schedule then take a while to be read so we’ve been in “hurry up and wait” mode.

I’m used to hearing “we don’t know what it is but you seem fine” and “we know but it’s nothing to worry about” and “learn to live with it”. My mother was once told she needed “the elixir of life”. Seriously.

First we did the simplest. We lowered my blood pressure medication. Beta blockers do a great job of treating hypertension but they also tend to slow the heart down. In my case, that was good since mine tends to run fast ’cause I don’t. Run that is.

No change, though so next I had an ultrasound of my carotid arteries. They are fine. That’s good.

I wore a Holter monitor for 24hrs. The results from that were mixed. On the one hand, I had normal sinus rhythm (meaning the heart beats in a rhythm linked to our breathing). But, I also had a lot of PVCs. I know I go to Lowe’s a lot but, really.

Okay, get serious here.

Premature ventricular contractions (PVCs) are extra, abnormal heartbeats that begin in one of your heart’s two lower pumping chambers (ventricles). These extra beats disrupt your regular heart rhythm, sometimes causing you to feel a flip-flop or skipped beat in your chest. Premature ventricular contractions are very common — they occur in most people at some point.

(…)

Your heart is made up of four chambers — two upper chambers (atria) and two lower chambers (ventricles). The rhythm of your heart is normally controlled by the sinoatrial node (SA node) — or sinus node — an area of specialized cells located in the right atrium. This natural pacemaker produces the electrical impulses that trigger the normal heartbeat. From the sinus node, electrical impulses travel across the atria to the ventricles, causing them to contract and pump blood out to your lungs and body.

Premature ventricular contractions are abnormal contractions that begin in the ventricles. These extra contractions usually beat sooner than the next expected regular heartbeat. And they often interrupt the normal order of pumping, which is atria first, then ventricles. As a result, the extra, out-of-sync beats are usually less effective in pumping blood throughout the body.

Why do extra beats occur?
The reasons aren’t always clear. Certain triggers, heart diseases or changes in the body can make cells in the ventricles electrically unstable. Underlying heart disease or scarring may also cause electrical impulses to be misrouted. Premature ventricular contractions may be associated with:

Chemical changes or imbalances in the body
Certain medications, including common asthma medications
Alcohol or illegal drugs
Increased levels of adrenaline in the body that may be caused by caffeine, exercise or anxiety
Injury to the heart muscle from coronary artery disease, congenital heart disease, high blood pressure or infections (myocarditis)

(source: Mayo Clinic)

So, that’s where we are now. And here’s the plan.

First, I am to go back to my original dosage of beta blockers. My BP has been slowly rising but the worrisome part is the systolic (upper number) has gone up to be way, way high. As in 100 pts or more higher than the diastolic (lower number) which is also rising. 195/70, 193/83, 196/91, etc. Not good.

Second, I am to cut back on caffeine. Not that I am a caffeine junkie, but I do drink Coke during the day at lunch. It is my treat of the day. If I have a headache, it is part of my treatment when one first starts. I’ve been having a lot of headaches since this started (which is why I had the carotid ultrasound) so I’ve been drinking more than one a day which didn’t help the PVCs which gave me more headaches which….you get the circle.

Third, I am to start taking my blood sugar levels more often. First thing in AM, 2 hrs, and 4 hrs after largest meal. It could be the high blood sugar is stressing my system which in turn freaks out the heart. Since my blood sugar is highest in the afternoons and that’s when the skips were the worst, we want to see if the dots connect.

And fourth, the line was drawn in the sand for me in terms of when to go to the ER. The other day, while yelling at the football games, my chest started hurting. Then it would go away. In the afternoon, when the skipping was the worst, my chest hurt after each hard THUMP then would slowly go away. Until the next one. So the doc fussed at me then said “If it happens again, go to ER. If nothing else, we get a picture of what is going on, even if nothing is going on.”

See, I have EDS and my muscles are constantly tight trying to hold me together. So on the one hand, it could be the heart was under a lot of stress and reacted with pain. Or it could be that two weeks of being chest conscious, I was unconsciously tightening those muscles which started having spasms. We’ve had heart concerns before but the pain was from sternum inflammation. Which hurts like the bejeebers, by the way. Don’t try that at home.

And fifth, one I added on my own, I am to continue doing the mini-meditation work I’ve been doing. A good friend said to use emerald green and sometimes pink (shudder) so I’ve been meditating on enveloping myself in emerald green that has a pink line around the edges. Doesn’t look as bad in my head as it does outside of it. If nothing else, it is making me feel like I am doing something to help myself vs sit here on my ass all day, worrying.

So, there’s where I stand. Um, sit. Whatever. Still concerned but relieved my heart is fine, just not feeling well at the moment. If you can, keep me in your prayers. Envelop me in green (but not too much pink) and don’t send me chocolate. Dammit.

Medicare and Medicaid Idiocy in NC

(the below is based on my understanding of how this all works)

[rant]

Medicare is a federal thing, granted to people over 65 (or 67?) and to the disabled (and some others). To receive Medicare as a person with a disability (PWD), one must be declared “disabled” by the Social Security Administration (SSA). The SSA determines the declaration on the person’s ability to obtain and maintain “gainful employment”. SSA is completely employment based. PWDs who gain the declaration from SSA receive Social Security Disability Income (SSDI). The amount paid is based on how much the person paid into the program while working. If a person was self-employed and did not pay into the program, they are not eligible for SSDI nor Medicare.

Medicaid is a state thing. Most states base the eligibility on income although there are other criteria.

A person can have one and not the other or they can have both. I have both. I have Medicare because I applied for and was granted SSDI about ten years ago. Since I cannot be on Lorna’s insurance even if we were married (DOMA), I have both medical and prescription coverage under Medicare. I have Medicaid since they only consider my income and, including royalties and SSDI, I only earn about 11K a year. Because Lorna and I are not married, she is seen as a housemate. Even though we support each other financially, her income is not taken into account.

Like most states, North Carolina is losing money. And like most state governments the first place they discuss cutting is Medicaid. NC has a new Republican governor, Pat McCrory who from the beginning is proving to have his head up his ass, one hand on the Bible, and the other hand doing a circle jerk with the other Republicans and the corporations who own them. One of his first moves was to threaten closing several liberal art state college programs, primarily any gender studies. Even though hundreds if not thousands of businesses (including rape crisis and victim advocates) use these educational programs, McCrory believes they are wasting tax money.

Now McCrory wants to “privatize” Medicaid. His idea is to have 3-4 groups hand out the money in the form of physicians having only X amount of dollars to spend on each Medicaid patient.

Let that sink in a minute.

Several years ago, Medicaid tried to limit how many physical therapy visits a patient could have. I can’t remember the amount but it was ridiculously low. So low that many patients with chronic conditions would have run out of their yearly allotment in less than 6 months. I was one of those people. I could probably go to PT twice a week and have something legitimate to work on. We had to teach me the steps, have me do it at home, then come back in two weeks to discuss and learn the next. It was tricky because I had to make sure I was doing it right, had to make up materials and equipment, etc etc etc. It was a pain in the ass for me and the PTist. She actually used me as a case study to present to the state board as she and other PTist began their “Are you fucking nuts?!” discussions. Other problems were because I didn’t fit into any single box in terms of medical definitions. I didn’t have paraplegia so I wasn’t eligible for certain things even though I needed it. I didn’t have MS so I wasn’t eligible for other things. We did a lot of headbanging for about two years until it was “fixed”.

And what McCrory wants to do is worse. This would limit not just my PT, but everything from blood work to equipment to tests to surgery. What happens if my doc runs out of my funds and I get ill? Or what if I am healthy and don’t use my allotment? Do I then have less the next year?

Hey, McCrory, you want to save the state money? How about taking a pay cut like everyone else has? No? How about looking at the money the state pays each year for those idiots to build their big houses on sand and expect the state to rescue their asses year after year when hurricanes come? No? Still stuck on chasing pennies while hundreds blow in the wind? Okay, then take a look at how much the state is paying for medical equipment. The 24v gel cell deep cycle batteries for my chair cost the state $500 each. My chair uses 2 of them. The state “rents” my CPAP for 13 months then buys it for me. In that 13 months, you could have bought me about 3 machines of much better quality than the dumb doorstop I got. You won’t pay for my $50 a year dental check up but you will pay the $14K dentures I will soon need. Shall I go on?

Better yet, allow Lorna and I to marry so I am no longer eligible for Medicaid! Wouldn’t that be so simple? Wouldn’t that save the state a ton of money since I’m sure we’re not the only lesbian/gay couple with this situation?

[/rant] (for now)

http://www.mountainx.com/article/49611/State-officials-to-visit-Asheville-will-discuss-Gov.-McCrorys-Medicaid-proposal

Moths, Shoulders, Chairs, and the American Way

A few months ago, I wrote about the pot smoking moth living in my attic. We’ve decided it’s switched to rolling its own cigarettes using whatever is on hand. This explains the smoke we smell every night between 9pm and 1am. Most of the time it smells like someone is burning trash. Nasty smell, by the way. I did have one moth actually land on my arm. I screamed like a girl and hit reverse while swatting it away. It landed under the monitor and when Lorna got finished laughing at me, she went to find it (I was out in the hall way). She never found it. I know it is under there, staring at me, waiting until my attention is diverted and then WHAM, it will land on me again. They like hearing me scream, by the way. Apparently “FUCK!” screamed just right is like crack to them.

My shoulder is no better. No worse, either. I guess that’s good. I can type longer now because I have everything so supported. A towel flat here, a rolled up towel there, lean in that direction…blah blah blah. I can type and that’s all I care about. We’ll be calling the doc about medication changes and probably going to see a massage therapist or whatever.

I am also due for a new wheelchair. I went the other day to the seating clinic where they measured and discussed what I am eligible for. And since Medicare probably won’t be around for much longer (depending on how the election turns out), we’re pushing to get as much done as we can, while we can. The big difference is we are going to try and get power leg lift. Meaning the leg rests raise and lower at the push of a button versus a bend to the side, pull out the knob, push down with feet while also pushing up or down. Pain. In. The. Ass. Monster Blue (my current chair) is a Permobil C300. The new one will be a Permobil M300. No clue what happened to D through L. Oh, and it will be silver with grey mesh seat covers. The M300 is a true mid-wheel drive vs the front wheel drive I have now. It turned better corners because there’s not wheels sticking so far out the back. And it goes in a very tight circle. And it will be silver.

And the American Way. It’s election year. Yay. All I’m saying about that. Except this: vote. Don’t care who you vote for (well, I really do but…) just as long as you vote. You don’t vote, don’t bitch later.

Oh, okay, one more thing on the election. All I hear is how the Medicare cuts won’t be affecting those over 55. That’s all cool for them but what about the rest of us? Primarily, what about those who are on Medicare because they are disabled? I dream of being able to return to work (not happening unless I am miraculously healed by a Bible wielding snake handling mouth foaming Pentecostal brethren named Brother Bob). I dream of writing enough books (and selling them!) that I earn enough to be considered gainfully employed. Hell, I’d love it if I could be put on Lorna’s insurance and get off of the limiting, embarrassing, controlling, bloated, paying-far-too-much-for-stuff Medicare.

All right. That’s enough for now.

Oh! Crap! I forgot one thing. I broke 100K on the novel! Of course, barely half of it makes sense but still. So I raised the goal to 120K. Editing will be fun.

The Fun of Being Me

Remember just a few days ago when I said I needed organization? And how after 20 minutes of work I was already done for the day?

I hurt my left shoulder some how. Could be just coincidence. It could be something is up with my pillow. It could be the arm of my chair is too low. Or it could be the hour or so of sitting in a new chair (demo) while they arranged and tested out and measured. Or it could be the fact my shoulder is attached to me. It is usually the right shoulder that gives me grief so maybe the left got jealous.

I’ve got a towel under my elbow to lift it up a little higher which is helping slightly. I’ve got my way cool split keyboard and I can put left half under my left hand wherever it needs to be. However, I can only type for a few minutes at a time. Just the tension of the forearm and the slight movement of the shoulder starts spasms from the bicep up to the back of my head. It’s too damn hot for the heating pad. And ice is not what it needs. Sometimes I just get tired of all the adaptions and arranging of stuff I gotta do just to exist.

All sorts of other stuff are going on, too. My chair cushion and backrest are well past their expiration date and I’m sure that’s not helping any.

I’m in a bad mood. I’m on the brink of depression. Someone in the neighborhood likes to burn stuff (mostly trash) between 9pm and 11pm nearly every night so the office smells like smoke. The joy just continues.

However I have over 94K written in the next novel.

On the Fringe

Not that long ago, but before the ADA was thought of, womyn’s groups, festivals, gatherings, whatever were all inclusive almost to a fault. No perfumes, no chemicals; interpreters for the deaf, readers for the blind, wheelchair accessible everything; people of all skin colors, hair colors, and belief sets were welcome. No one was left out. Well, except for perfume wearing racist anti-cripple people.

Now, long after the ADA is law, accessibility and inclusivity is gone. Gay bars? In basements or up stairs. Lesbian dances? In a really cool place up stairs. Womyn monthly dinners? Up stairs. Anyone interesting in moving the venue or making the place accessible? Nope. “Gee, you’re right. Someone ought to get right on that.”

So, again, Lorna and I won’t be going to the Women’s Dance this month. Nor will we go to the Lesbian/Gay Prom. Or the monthly dinner. The LGBT community has a growing case of NIMBY syndrome. (not in my back yard)

Shoe to the Pedal

My pedal machine thingy came today! Assembly was easy enough despite the lack of information in the short manual. They rattled on and on (even had an extra sheet attached to the outside of the box) about how the pedals seemingly get attached in opposite directions but barely mentioned the odd wrench that came in the box.

I can’t use it in the office chair because the chair has wheels. Duh.

I can’t use it with my wheelchair, at least not without moving the legrests.

I can, however, use it with the horribly uncomfortable wooden chair we have in the kitchen. Figures, don’t it?

I tried it out but not for very long. This cold weather and the storm front coming through has my left hip quite unhappy. The tension adjuster is turned all the way “off” but it is still there. I was concerned it might be too much but it wasn’t.

The little electronic meter is fun to watch. It has speed as a constant display then you can choose 3 others for the second half. You can choose time, distance, and calories or can set it to ‘scan’ to automatically scroll through them. It doesn’t have an alarm or whatever so you’d have to watch the clock or the distance. Gee, gotta use my brain, too?!

I’ll need to spend a while with it, figuring out how long it takes to hurt myself compared to using it long enough for any benefit such as burning calories. In PT I did it just 5 minutes forward and 1 minute backward but that was more of a warm-up than actual exercising. I’ll start out at that and do it 3 times a day then increase it if possible.

Thoughts?

Writing Again, Headaches Again

Now that I am writing more, the headaches have returned. They never truly went away but now they are nearly every day with varying intensities.

A recent study has kinda sorta figured out how light and migraines are connected. The light didn’t cause the migraine but instead made it a lot worse. Light always bothers me and I don’t see it as being much different when I have a headache. For me, it is sound that is hypersensitive and will push me from nausea to vomiting.

I did, though, find the light study to be interesting. What they discovered was the light caused electrons on the outside of the nerve fibers to get excited. This excitement lasted even after the light source was removed.

They traced the path of the melanopsin retinal cells through the optic nerve to the brain where they found a group of neurons that become electrically active during a migraine.

“When small electrodes were inserted into these ‘migraine neurons’, we discovered that light was triggering a flow of electrical signals that was converging on these very cells,” said Professor Burstein.

Even when the light was removed these neurons remained activated.

“This helps explain why patients say that their headache intensifies within seconds after exposure to light, and improves 20 to 30 minutes after being in the dark.”

Dr Sue Lipscombe, a GP from Brighton with a special interest in headaches, said: “It suggests that an external source is contributing to the migraine condition and it is not just a contained brain disorder that just takes its cycle but that there are outside modifying factors.”

(source)

It is quite possible that my headaches are not migraines but a form of tension headache. I don’t always feel nausea but I don’t lean that way anyway. The longer the headache lasts, the more likely I will start to get the nausea. My headaches will often back off with Tylenol, ibuprofen, and a can of soda if I catch it soon enough. They don’t go away completely and within 3 hrs or less, it will rise back up. Ice on my head can help, too, when it gets really bad. What helps the most is a cool shower where I do nothing but sit there with the water hitting my scalp. The touch sensation and the coolness will back it off enough that I can drug myself some more and go to sleep.

The headaches are definitely linked to my neck issues. Which is why I think there is some sort of posture change I do from when I am playing a game to when I am writing. The main outright difference is that my right hand is on the keyboard vs the mouse. If anything, I tend to sit straighter when I am typing than when I am involved in a game.