Healer Report #1 – Dangers of major surgery (TMI ahead…if you’re squeamish, watch out!)

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Hello everyone. First, you’ll notice the blog changed again. That’s to proudly display the Amberwoods Station banner that my friend Sara made for me. She did some other stuff for the Amberwoods Station for me, and you’ll get to see those later.

Second, yesterday I went to the OB/GYN to discuss the possibility of a major surgery to deal with my monthly cycles. That was what I really wanted. However, he laid out what the risks for me were. I’m a high risk candidate for major surgery. I have a clotting disease – it’s genetic (we tested that a few months ago) – and if I have major surgery, I run a high risk of having more blood clots that could easily form in my lungs and kill me. I could also have a stroke, which would either paralyze me or kill me. Or I could have a heart attack or two…which would most likely kill me. Can you see the trend here?

We discussed several different options and I finally agreed to try one that I wasn’t sure I wanted, but if it takes care of some of the issues I have every month I’m happy to try it. The first option we’re going to try will take six months to start working, but six months is better than death.

One thing that my doctor said has stuck with me, and I thought I’d share it here. He told me yesterday: “People think surgery is like buying a plane ticket to New York City. You buy the ticket, go to NYC, then fly home. They think, ‘hey, that was easy and I’m very happy.’ Surgery isn’t like that all. It’s a very serious thing to consider, especially if you have other health issues. Always do the research before you request a surgery. If you’re referred to get a surgery, research the procedure before you go through it so you know what to expect.

–End report

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Medical update

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It’s been a long time since I did one of these. I know a lot of you are more interested in my fiction rather than my reality, but this blog isn’t just about my writing. It’s about me, my life, and everything I do outside the writing.

I’m due to go to the vascular surgeon next month to discuss a surgery to reduce swelling on my left leg. My right leg, which is always swollen, is ineligible for the same surgery because I had a DVT (blood clot) in the main vein when I was in my late teens, early 20s. How I didn’t notice – and survived it – I don’t know. But there is scarring in the vein to prove it was there. The surgery basically shuts down the main vein, leaving a lesser vein in charge of blood flow. This reduces the swelling. Because of the DVT scarring, it’s too dangerous to do the surgery on the right leg.

As a result of the swelling, I’m stuck wearing compression pantyhose for the rest of my life. I’m not going into the gritty details, but I actually had to put my surgery consultation off for an extra three months because I kept getting shitty compression hose from Ames Walker (an online medical supply store). I left multiple poor reviews on their site as well as other places online and finally got a halfway decent pair…that ended up with a huge whole in the butt within a week. The legs are in good repair, so I’m still wearing them. I can’t afford to get more. The really good ones run $150+, and that is WAY above my financial abilities right now.

The reason for the three month wait is because Medicare requires three months in the compression hose before they’ll pay for the surgery. It’s the wonderful bureaucracy being arseholes again. But I go see them next month, and we’ll find out when the surgery is and how long the recovery is. And what the recovery will be like.

I’m on a blood thinner now because of a history of blood clots. We did a DNA test and I have the genetic marker for a hereditary clotting disorder. My dad has the same thing. Both of us are on the same blood thinner, which is a newer one that doesn’t require constant blood tests and doesn’t have the dietary restrictions that Warfarin (Coumadin) does. I like it because I’m on a maintenance dose for now. I’ll check in with my hematologist in a year and we’ll go from there.

I’m still dealing with my seizures, but I haven’t had one in almost a year. I’m going to talk to my neurologist about reducing my meds the next time I see him…which is in March, I think. My seizures didn’t start until I got put on the Zyprexa, which has a side effect of seizures. I’m off that med now, and have been for about a year. So now I’m wondering if that was the source of my seizures since I’d never had one before that time.

Going to the mental health side of things, a lot of things have changed there. My original counselor moved to Canada, so I switched to a new one closer to home. I like my new counselor because she specializes in trauma and PTSD. I’ve only seen her a few times, but she’s already been a big help. I also have a new med manager – again, one closer to home – which makes me happy. This is mostly because she’s closer to me. But it’s also because the bitch in Newport wouldn’t listen to me and has caused me no end of trouble. She’s been reported to the state numerous times, and I don’t know if something’s being done now about all of the infractions that were leveled against her.

Between my counselor and my med manager, we’re beginning to wonder if I’m actually bipolar. We tossed around borderline personality disorder, but I didn’t fit the symptoms for that either. One of the things both Adriana and Patricia pointed out was the fact that PTSD could be misdiagnosed as bipolar.

I was 16 when I was first diagnosed, and right in the middle of the worst childhood ever. (Abusive mother, distant father, violent older sister, oblivious older sister, disinterested older brother, and a younger sister that needed constant protection with me being her only protector.) The counselor we went to called my mom in with me so I couldn’t tell him anything about what was really going on. Not that I would have at that point. I was too scared.

He decided I was bipolar II rapid cycling, and put me on lithium. That was the most horrific medication I’ve ever taken. Then he added Depakote. Talk about zombie. I eventually took myself off those meds and my life was chaos for many years. I finally got things sorted out and was put on all sorts of different meds over the years. Finally they settled on Prozac and my anti-seizure meds. They turned me half numb and I had a hard time with some emotions.

I also had issues (THIS MAY BE TOO TMI FOR SOME) with my libido. As in I didn’t have one. Sex happened maybe once or twice a month, not for a lack of trying by my husband. It either hurt or I was so disinterested that he couldn’t get me to even want to try to get in the mood.

Finally, my new med manager decided that maybe – just maybe – I was just suffering from PTSD and that I wasn’t bipolar and didn’t have borderline personality disorder. She thinks that with dedicated therapy a lot of my mood issues will vanish. To that end, she took me off the Prozac I’ve been on for years and put me on Effexor, a drug that takes the edge off of the anxiety that comes part and parcel with PTSD.

It took a few weeks, but a whole new world opened up to me. I could feel again in every situation. I now like to laugh, to play, to move. Walks are more enjoyable. I’m happy again. I’m more active. I have a real desire to improve my health, lose weight, and make myself look better. I want nice clothes (like dresses, skirts, blouses, jackets, etc.), which I haven’t wanted for years. I’ve had a whole personality shift once I was off the Prozac.

Another thing that’s happened (again, this might be too much TMI) is my libido has kicked back in. I’m not nearly as active as I used to be. I’m not in my 20s anymore. But I’ve been enjoying my husband’s company again. That’s another thing that’s changed. My husband and I are getting along better. We fight less, talk more, and can understand each other’s emotions.

The downside to being on the Effexor instead of the Prozac is I’m feeling again and don’t know how to deal with some of these emotions. I lash out when I shouldn’t, I get really snippy at times for no reason whatsoever, and I act impulsively when I’m agitated. I’m having to learn how to deal with all of this stuff again. It’s hard, but worth it because I’m enjoying life even more now.

I was diagnosed with a sleep disorder with a long, fancy name that boils down to “we don’t know what the fuck you have so we’re just giving you a general narcolepsy disorder.” I tend to fall asleep whenever I feel tired, which is usually all day and all night. I’m getting used to it though and I’m finding ways of getting more sleep and/or staying awake during the day.

I’m dealing with a lot of pain these days, but I use pot from time to time to deal with it when I just can’t ignore it. I don’t take pain pills of any kind. The damage OTC pain pills can do to you is astounding and very dangerous. I also won’t take opioids because of the risk of addiction. Speaking of addictions, the pot is actually killing my desire for alcohol too. As a recovering alcoholic I find that to be a highly useful side benefit. I hate smoking, so that’s my last resort for imbibing in the pot. I make cannabutter from one of our crops and make edibles. Those are my preferred method of partaking in cannabis.

I think that’s it for now. I’ll update you when I have my vascular appointment.

Hugs to you all, and may the rest of your week and the weekend be amazing and full of life and laughter.

Goals for December 2017

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Hi everyone! It’s been a while since I managed a weekend post. I’ve been having some issues as well as just general laziness, so those are my excuses. They’re not good ones. But there they are.

I was decidedly unmotivated last month. I don’t know if that’s because I forgot to do a goal post, if I did a goal post and ignored it, or found that I just didn’t care because November was a month full of stress and depression for me. I did manage to win NaNoWriMo though. I barely squeaked by with 50,067 words, though if you look at the NaNo website it says 50,167. I heard from a lot of friends that the validator on the site added 100 words to their documents too.

So, here’s December’s goals –

  1. Get back on the weight loss train. – This is getting rather vital as I’ve gained back all the weight I lost and my health isn’t that great because of it. My end goal is 135-140 lbs, which is the “healthy weight” for a 5’3″ woman. At 40, this is going to take a lot longer to get rid of than if I was still in my 20s or 30s, but it is possible.
  2. Document more of my cooking adventures. – My ultimate end goal with a lot of my cooking adventures is to write a cookbook. I can’t do that if I don’t have pictures of the foods I’m preparing. So I need more pictures! I also need to be better about writing down the recipes I make up off the cuff so I can repeat them later if they’re popular.
  3. Finish the first draft of Into the Flames. – I want to be able to start the rewriting process for The Tiger’s Keeper (aka Tiger, Tiger) in January so it’s hopefully ready for publication by June. To do this, I need to get the second draft done and into shape for my beta readers.
  4. Try to get non-fiction posts up every weekend. – Yes, this is still the goal. It’ll continue being the goal even after Tiger, Tiger is done on my blog since you’ll be going back to the short little drabbles of fiction during the week, sometimes supplanted by my “slices of real life” posts as things happen.
  5. Focus some time on personal growth plans. – I have a lot of ideas for what I want to do to and for myself to become a better person. I really need to do this, as some of my less pleasant personality quirks are causing issues for people. So I’m going to be addressing at least one of those this month.

I think this should be enough for me to get through December. We’ll see how everything goes in January. I hope you all have a great weekend and we’ll see you tomorrow!

Why do I even bother?

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This was me, back in May. (As is obvious, since my hair is long. Have I shown you guys my new hair cut and the dyeing job I did myself? I need to check that in a minute.) You might notice my rather prominent stomach. That isn’t because I’m pregnant. It’s because I’m fat. I weighed 245 lbs in May with the goal to getting down to around 200 lbs by December.

Fast forward to the end of September/beginning of October. I weigh 247 lbs. I got down to 230ish at one point, but I’m back up to almost 250 lbs. Now part of this is when my legs went out due to the nerve issues, I went completely sedentary. I also didn’t exactly cut down my portion size. I could barely hobble around the house, let alone go for walks or anything more physical. I even gave up  yoga/stretching.

I’m planning on taking a more current picture soon, so we can all see what I look like now. I’ve started taking new steps towards changing my weight and physical health. I’ve installed two apps on my phone – one to help me keep track of how many calories I should be eating to lose around 1.5 lbs/wk, how much fat/protein/sugar/carbs I should be eating per day, and it even tracks my water, and the other to track me as I walk (usually with the puppy.)

My end target goal is ~135 lbs. Why? Because I’m 5’3″ and a healthy weight for my size is between 107 and 140 lbs. As far as I’m concerned, with my bone structure, I’d start looking more like a skeleton with skin stretched over it if I let myself get too close to 107 lbs. So I’m trying for 130-135 lbs. At 1.5 lbs/week, that should take around 2 years.

I’m taking it as slow as I am because 4-8 lbs/month is a healthy weight loss. Anything more is considered unhealthy and anything less isn’t really helpful because you just pack it all right back on. Now, I am very aware that as I lose more fat it’ll convert to muscle and my weight may or may not fluctuate as much at times. I’m not worried about that. One of my goals is to get rid of my stomach along with losing my weight.

Now, you might be concerned by the title of this post. You might think it’s because I’m depressed about my weight and such.

I’m not.

“Why do I even bother?” That was a question that used to send me into a spiral of depression and self-destruction. Now, when that pops into my head, I tell myself why.

“I want to be healthy.”

“I’m tired of feeling ugly.”

“I want to be able to wear the clothing I like.”

“I want to be able to keep up a little more often with my husband.”

“I want to be able to farm without getting out of breath every two seconds.”

“I want to be able to get off some of the medications I’m on.”

“I want to be able to go to cons and not feel quite so out of place.”

These are just some of the reasons, and they all make me smile. I’m not proud of who I’ve been in my life, but I am who it’s made me, and there’s so much I’ve learned over the years that – realistically – I don’t want to change what I’ve endured. I want to change how I deal with it, how I let it affect me now, and let go of everything that’s weighing me down (pardon the pun) from my past. Part of my expanded waistline is because I “depression eat” and don’t exercise.

That’s changing now. No more candy (except for dark chocolate.) Very few sugary drinks (I’m not giving up all my quad shot mochas or the occasional Mike’s Hard Lemonade/wine cooler/similar beverage – but NO MORE HARD LIQUOR/SODA mixes.) Cut back on my simple sugars and refined sugars (syrup, cookies, brownies, etc. – though I’ll still eat them on occasion). There are special occasions where some of these will be lifted (just not the hard liquor one) – such as holidays – but that’s about it.

I have goals.

I have a life.

I’m going to live instead of exist.

I’m 40 – I’m not dead.

I am an adaptable human being – watch me succeed!

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Relaxation

 

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Photo taken by me at Boiler Bay in May 2017

I’m making this brief since I can barely think right now. I’m calling my doctor’s office and seeing if I can move my appointment from the 30th up to (hopefully) today. If not today to ASAP. The pain in my legs has increased to the point where it woke me up at 2:30 AM. I’ll update this post later with what I learn from the doctor.

Wish me luck!

Update – Well, I was told to go to the urgent care clinic because the computer systems were down. That was a waste of time. They told me I needed to see my primary care doctor. So I staggered to the reception desk (Tims had to support me because of how much pain I’m in) and got the first available appointment – which is tomorrow morning at 8:45 AM with a check in at 8:30 AM. At least it’s better than 8/30/17 at 9 AM, which is when I was originally scheduled. I’ll do another post as soon as I know what my doctor suggests. Continue watching this space for further updates.

Update 2 – The doctor increased my Gabapentin. I’ve been taking it for a couple days now. The pain is lessening but I’m not happy with the side effects. I’m lightheaded and disoriented all day. I take them every 8 hours and I take them three times a day 4:30 AM, 12:30 PM, and 8:30 PM. Since I was already taking my usual meds at 4:30 and 8:30, that wasn’t too hard. But the 12:30 one was. I ended up having to set an alarm on my phone to keep myself from forgetting. I’m hoping to be well enough by Monday 8/28/17 (this is actually Sunday…I haven’t updated because I wasn’t feeling too good on Friday and Saturday) to take over my usual cooking duties. Which would be great, since we need more bread.

Adapting to life

Random Ramblings #2 – The Health Episode

Hi everyone. You may have noticed I missed yesterday’s post. That was mostly because of the eclipse here in the US. I was excited for that and really wasn’t paying attention to anything else. I was also dealing with another issue, one mentioned in the YouTube video I linked above. It’s my second vlog episode, and one where I actually break down. I don’t do that often in anything public, least of all something that’s on the internet. But I felt it was important to get out my message, and that’s part of it.

What’s so important that I had to say it when I was so emotional? I went to the ER for a screaming headache and the fact that my legs felt like someone poured gasoline (petrol for those of you not in the US) on them and lit them on fire. They were so much on fire I wanted to scream. They still are. The Nurse Practitioner treated the migraine but really didn’t say much about my legs other than that the pain was most likely a “form of neuropathy.” When I talked to my primary care doctor, she agreed with the assessment. When I talked to my vascular surgeon he agreed with the assessment, even though neuropathy typically sticks to the feet and hands and is more common to someone with diabetes.

No, I don’t have diabetes. I don’t even have pre-diabetes. My A1C number (that’s what they look at to assess your likelihood for diabetes) is at the low end of what’s considered normal. It’s not too low though, so there’s nothing to be worried about. But now I have a problem – what exactly is wrong with my legs, and is it permanent? I hope it’s not, but if it is, I’ll have mobility issues for the rest of my life. This is something that I don’t look forward to, since I have more than enough health issues that are going to last me for the rest of my life. I don’t need one more.

I’ve set another appointment with my primary care doctor to see what she says, what tests I need to take to find out what this is, and how I can treat it – if there is a treatment. I’ve had to make some adjustments to my life, though at first I thought I’d lost the ability to do one of the things that makes me really happy.

I thought I’d lost the ability to cook and bake. Both of those require me to stand on my feet, and my legs just couldn’t take it. It was suggested I could sit in the kitchen and direct people, but that wasn’t what I wanted. I wanted to have my hands in everything. I wanted to chop, stir, knead bread, mix pancakes. I wanted to do everything when it came to the cooking.

So, thanks to my wonderful friend Deborah urging me not to give up on something I love so much, I came up with the idea to turn the table that serves as the “island” in our kitchen into my work space. With some help, I cleared it off and got rid of most of the stuff under it. I tucked a stool underneath for me to sit on and voila, instant work area. It got its first test yesterday morning, and it worked fairly well. I still had to do a lot of standing and walking, but that was mostly because my original breakfast plan got scrapped due to not finding a couple ingredients. But if I plan carefully, I shouldn’t have to worry about standing at all, except to pull things out of the oven and to drain things in the sink, like pasta. This makes me very happy.

What I’ve learned through all of this is humans are very adaptable creatures. We constantly adapt our surroundings to suit us. And if that doesn’t work, we adapt to that as well. We know we can do things that will make our lives easier, or at the very least more livable. We are remarkably resilient and can do a lot of stuff.

So when life throws a curve ball in your direction, don’t let it stop you. Roll with it and adapt to the situation. Figure out how to deal with it and move forward. Go ahead and have a good cry if you need to. An emotional breakdown is okay. I’ve had a few since this all started. But the next step is to keep moving beyond them. Keep moving forward. That’s the only way to survive.

The heroes of the medical profession

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Photo via Visual Hunt

I know a lot of you hang around because of my little fiction drabbles – which aren’t always as short as I intend – but I’m going to talk about something else serious today. Then perhaps tomorrow the drabbles will resume. I want to talk to you today about the heroes of the ER – the nurses.

The first people on the scene when you get into the ER aren’t the doctors. They’re the nurses. They take your vital signs, listen to you as you explain your situation, clean up the blood and/or vomit and/or urine/feces as they listen, and note a general assessment in your chart. Then they go off to tell the doctor what’s going on.

They check on you regularly and if they think the doctor is being too slow in doing something for you, they’ll ride their ass until they come in and talk to you. Once that happens, treatment begins. But it isn’t the doctor who does the actual treatment. Once again, it’s the nurses. They’re the ones who stick the IVs into you, who put catheters in places you’re rather not have one, who console you when you hear about all the tests you’re going to have to go through, and administer any medications the doctor thinks you need right at that moment. They’re also the ones who try to make you feel better with a good bedside manner – which many ER doctors don’t have.

The nurses are the ones who check on you after you’ve returned from being wheeled out for getting x-rays, CT scans, MRIs, or whatever tests you’re being given that will take you out of your spot in the ER. They’re the ones who keep you updated on what’s going on. And again, they’re the ones who push the doctor if they think they’re taking too long.

Of course, if the ER is really busy, you might not see your nurse as often as you’d like. But they will make sure you’re checked on, even if they have to beg one of their coworkers to check in on you. They want to be sure you’re safe, cared for, and as pain free as possible.

When the doctor gives their final diagnosis and comes up with a treatment plan, they’ll come in and give you the bare details and then leave. It’s the nurse who brings up the discharge plan and explains everything to you in detail, answers any questions you may have, gives you whatever warnings are needed, and wishes you well. The nurses are the ones who tell you if you have questions to call and if it gets worse to come back. The nurses are the ones who follow you to the door to make sure you’re well enough to leave, and if you can’t walk, they’ll get a wheelchair for you and take you out to your car.

Even outside the ER, nurses are the ones who do the bulk of the work. In a hospital setting, the nurses outside the ER do a lot of what the ER nurses do. In a doctor’s office, they’re the ones who take your vitals, ask you what’s going on, get notes for the doctor, and then they’e also the ones who administer any shots the doctor wants you to have and explains what the doctor wants you to have done if you have questions.

My brother is a trauma nurse. My ex-sister-in-law is a regular hospital nurse. I was a CNA for a few years, who are the right hands of nurses outside of the ER. Be nice to your nurses. For the most part, they genuinely care about you and want to make sure you’re healthy and happy by the end of your visit. And if that’s not going to be the case, they’re the ones who are there to grieve with you, to comfort you, and to show they care and want to ease your burden as much as possible as you go through this terrible time.

I’m not saying doctors don’t do anything. They do a lot. General practice doctors are a lot more hands on, and work hand in hand with their nurses. A lot of them keep their nurses in the room with them to be an extra pair of hands and to explain things when the doctor can’t. But in a hospital setting, doctors have very little time to deal with patients as they often have twenty other patients to attend to – oftentimes more. So they are stretched very thin. That’s why they rely on their nurses to get things done.

Nurses are heroes. Remember that. Nurses are heroes.

Why we can’t have nice things (aka why Alison can’t get the dental work she needs done)

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Photo via Visual hunt

So, I had a visit to the dentist this morning. I had a tooth that was breaking apart that I needed to get pulled ASAP. I’ve been putting it off while I paid down the balance on my last dental bill, but it was to the point I couldn’t wait any longer.

I went in and my dentist – who is AWESOME – looked over my teeth and said he’d pull the broken one and the one next to it since my ultimate goal is to have all my teeth pulled and dentures fitted. I agreed, as long as we could do it as an emergency extraction which is $99 for cash only patients – aka those of us who don’t have dental insurance.

The dental assistant/hygienist talked to the front desk person and came back to tell me that the $99 emergency extraction was only for new patients, and as an existing patient I’d have to pay the full price of $101 for each tooth. That’s $202 to get two molars pulled.

I couldn’t afford it. I have to keep my balance under $300 to maintain the kind of payment plan I have with them so I told her that they just needed to pull the broken tooth. She said she’d go let the dentist know. I wasn’t happy. I really wanted both molars out simply because it meant one less trip to the dentist, which I don’t like anyway.

The dentist came back and told me they were still pulling both teeth, but he’d only charge me for one. He said it would take him an extra 10 seconds to pull the second tooth and he didn’t see any reason to make me go through another visit just to pull one tooth on the upper left side. He told the dental assistant/hygienist to mark it as the first one as a regular extraction and the second one as a provider write off. He said he didn’t care what corporate said. It was his time he was being paid for, and he wasn’t going to waste it making me suffer.

So I got two teeth pulled for the price of one. My mouth is extremely sore right now, and I’m waiting until the numbness fades a bit more before I try to eat something so I can take some Tylenol. But talking to the hygienist/dental assistant, she showed me my treatment plan. I still have a long way to go, and it’s still going to cost me almost $4000 in the end to do what I need to.

Let me point something out real quick – that’s $4000 AFTER I pay off this current extraction and the rest of my earlier balance. That includes all extractions and the dentures. I also want to point out that I’ve already had four teeth pulled. The first was $99 because I was in pain. The other three were the $101. I’ve also had x-rays twice, which are around $180 each time. So I’ve already paid a little over $400 to my dentist. I still have the rest of the balance from the last visit as well as the new balance from this to pay off. That’s going to bring that total up to a little over $600.

Now, I’m on Medicare with Medicaid paying the deductibles for me. Which means I don’t have dental coverage. I did some checking on dental insurance. For the kind I’d need to get the work done I have to have, it would cost me approximately $100-$180 per month as a premium. I can’t afford that. And that was on the low end that barely covered my needs. The really good plans can run you upwards of $300+, if you’re lucky.

I don’t understand why medical, dental, and vision insurances are so fucking expensive. Well, yes I do. It’s because the US utilizes a for-profit insurance system instead of universal healthcare. With the insurance companies out to make as much money as they can while paying out as little as possible, low income to the middle class have to pay so much that it’s almost impossible to get good, comprehensive coverage.

The US Senate wants to repeal the Affordable Care Act without offering us a replacement. They want to take insurance away from almost 11.4 million people. They want to end the Medicaid expansion, which would mean I’d lose my coverage there because I make too much according to the normal federal guidelines. So that would mean I’d be forced to pay all of my deductibles for Part B and Part D Medicare on my own. That would remove an additional $300 from my already extremely limited funds. I would then have to find a supplemental insurance coverage plan since Medicare really doesn’t cover all that much anymore. Which would cost me even more, cutting even deeper into my fixed income.

This is bullshit. Comprehensive coverage – medical, dental, and vision – should be provided for everyone. These are necessities for a good quality of life, not to mention life saving at times. Yes, I realize my taxes would probably go up a bit if we did implement a universal healthcare system here in the US (once my husband’s business starts generating income we will be paying taxes.)

You know what? I’m okay with that. I’m okay with keeping everyone in this country healthy. I’m okay with spending more to help those who are unable to pay exorbitant medical bills due to financial hardships.

People say that with universal healthcare there will be long waits for providers. Like there isn’t right now? In order to get into see my regular doctor, I have to put in a request at least 2-3 weeks in advance of when I want to see her. If I don’t and call for an appointment out of the blue, it could take a month or more before I can see her. If it’s serious enough, they tell me to go to Urgent Care or the ER. Neither of those are cheap, and can often lead to a lot more problems for me.

And specialists? Ha. I had to wait four months to get my first appointment with a neurologist even though my seizures had kicked back after being controlled by medication for 4 years. The hematologist and vascular surgeon I was told to see? The vascular surgeon took three months and the hematologist took a month. The sleep doctor I’m supposed to be seeing for the fact that there’s a chance I have sleep apnea? Four months. So don’t tell me there’s “no wait” with what we have now. Our whole system is fucked and no one seems to care.

I don’t like doing political rants on my blog very often, but right now, call or email or fax your Senator and tell them to tell Mitch McConnell to go fuck a light socket. We deserve insurance. We deserve healthcare coverage. And those like him who are too wealthy, too pampered, too sheltered to give a fuck about the rest of us? They need to go. ASAP.

Not “just a toy”

Fidget cube

This is a fidget cube. In fact, this is MY fidget cube. It has multiple sides and multiple ways of engaging my fingers and my mind. To be specific, let’s turn to the description of the cube itself. “It has sensory tools on all sides: an on/off-style switch, gears, a rolling ball, a small joystick, a spinning disc, a “rubbing stone”, and 5 buttons.”

The reason I’ve been wanting one since I first heard of them is because of their intended purpose. As per the description I found: The cube is intended to provide an easy way to occupy one’s hands and other senses, particularly for self-soothing.

I suffer from anxiety and PTSD. They can be pretty bad, especially when I’m out in public around a lot of people and/or loud voices. I have a tendency to start wringing my hands, picking at my skin, or pulling on my hair when I get frazzled and that causes serious damage. I’ve actually made myself bleed several times because of it. The cube, which is compact enough to fit in the pocket of most of my jeans, gives me something to work with my fingers so I don’t start wringing my hands or doing anything else to hurt myself.

A lot of people are turning these into toys, giving them to children (and even some adults) because they’re novelties and causing problems for those of us who need them for the self-soothing properties. It’s the same with fidget spinners. Fidget spinners were first created in the 1990s for a similar purpose – they were designed to help people with ADHD, autism, or anxiety release nervous energy. Yet they too are being seen as toys, as games for everyone to play with instead of being recognized for their original purpose.

When I was in the store where I got my fidget cube, I watched a rather large family getting fidget spinners. I listened as the children talked about how they were going to practice until they were better than their friends so they could win the bets they made and get candy from their friends. Their mother, who was with them, was encouraging this. I was appalled by this flagrant disregard for the fidget spinners’ true purpose, and then I realized that this was perfectly normal anymore.

People turn therapeutic devices into toys for children all the time. Then they get banned because someone does something stupid, and those of us who are helped by those items are left with nothing to use.

I wish people would understand that what you see as a nonsense toy is actually a tool for many of us to keep us sane, to help us not hurt ourselves, to keep us from passing out from panic or to make sure we can focus on what’s going on around us.

So when you see the next biggest “fad,” do some research. She if there is another purpose behind it. I’m not saying don’t buy it. If you want it, and can afford it, by all means go for it. Just keep in mind that there are people who use the device for something other than just amusement. (Because I will admit using my fidget cube is fun, which is part of what helps alleviate the anxiety.)

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