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.

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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!

I love you Mom

Melissa Mom Alissa Maegan Shandra

(This picture contains my older sister Melissa – who passed away from cancer in 2016, my mom – who passed away from cancer in 2003, my niece Alissa – who is Melissa’s youngest daughter, my youngest sister Maegan – who is mentally disabled and will never be able to live on her own, and my niece Shandra – Melissa’s oldest daughter.)

My mom. I still have so many conflicting emotions about her. My childhood wasn’t great living with her, but those two years before her death were amazing, and those are the ones I’m choosing to focus on more and more often now. She was so excited about my Katie being born. She so desperately wanted to be there. But her doctor told her that wasn’t going to happen. She went from diagnosis to death in three weeks – stage 4 stomach cancer that would have been discovered if her asshole doctor had just listened to her instead of brushing her off, telling her to “get a hobby” and that she was “depressed.”

Today would have been my mom’s 78th birthday. I often think about how life would have been different if she’d survived her cancer. Would we have lost our kids? Would we have ended up living on the coast? Would I have tried to commit suicide in 2013? Would she have abandoned us if we had lost the kids like the rest of our families did at that point in our lives?

Of course, the answer to all of these questions is “I don’t know.” I’ve been asked how I can love my mom after all she did to me. Well, I can honestly say my childhood wasn’t all bad. I do have a ton of happy memories from it too. There was a lot of uncertainty and fear growing up in my parents’ house, about whether my mom’s mental illness – though none of us knew anything about bipolar disorder back then – would cause me problems or not, but we had a lot of fun too.

Like cooking lessons. On her good days, those were a blast. She was teaching me how to make chocolate chip cookies and had to run to the bathroom. I was 10 I think. She told me when the timer went off I was supposed to pull the cookies out of the oven. Except she forgot to set the timer. I realized this and decided to help. I looked at the recipe, saw it said 10 minutes, and then set the timer – it was one of the ones where you twisted the dial past 10  and then you could sent the time. I watched the timer and when it dinged I pulled out the cookies.

They were burnt. I was horrified (and a little scared – mom’s nature being what it was back then) that I was going to get yelled at. Mom came out and looked at them, then looked at the timer. “I didn’t set the timer, did I?” I explained what I’d done. She just laughed and showed me how to do it properly. And that the recipe said 8 to 10 minutes and that 8 minutes was almost too much in our oven. She usually only put them in for 6. She threw away the burnt cookies and we carried on.

Then there were the camping trips. Oh the camping trips. My dad was a workaholic when I was growing up, but when he took his vacation in the summer, we did two things – went to visit my grandparents and went camping. My visits to my grandparents were never comfortable, but that’s for another post. Let’s talk camping.

I think being outdoors was soothing to my mom. She loved camping, going for picnics, going fishing, doing anything she could outside. On our camping trips, we’d go to one of our favorite campgrounds in two cars. Up until I was probably 14 or 15, dad would be driving the old pickup he bought in the late 60s packed full of our camping gear while mom brought me and my little sister in the second car behind him, along with spare gear, most of the food, and whatever else we thought we couldn’t live without.

She and dad would set up the tent, and once I was strong enough to help, I’d help pound in tent stakes. We’d get the canopy up over the table in case of rain. And when I was a kid, it rained a lot more than it does now in southern Idaho. At least it seemed to me it did because just about every single camping trip we got rained on.

We used an old gold pan (the type you use when you go panning for gold, not one made of gold) that had it’s bottom sealed as our wash basin. We washed dishes in it. We washed our hands and faces in it. Water was boiled, first on a charcoal grill we packed with us, and then on the Coleman gas grill we started carrying because it was lighter and cheaper to pack around. Cold water was added to make it easier to use for all of us.

Dad would cook, we would eat, mom and I would do the dishes, and then we’d all scatter to do whatever during the day – usually hiking or playing in the river. We always seemed to manage to snag the campground with the path right down to the water. It was my parents’ favorite spot.

At night, after dinner, we’d gather around the fire pit that dad would have lit before dinner, and tended while we ate. It would be just about right. We’d talk for a bit and then dad would break out the makeshift skewers that had been a part of our family for years – wire hangers he’d bent and twisted into long metal rods with a twisted ring and the end that we held. We’d roast marshmallows and talk and laugh. Maegan always took her marshmallows to my mom to eat, and mom would dutifully eat them. After four or five, she’d tell my sister she’d had enough and Maegan would give her skewer to dad, who burnt off the residue and set the skewer aside for the next night.

After thatwe’d light the lamps – kerosene with the little sock like burning wicks – and play cards, Yahtzee, and everything else we could think of. Then I’d read, mom would write (she’s the one who fed my interest in becoming an author), Maegan would be put to bed, and dad would do whatever it was dad did. Sometimes strum on his guitar, before his hands got too bad. Sometimes whittling. Sometimes just sitting back with his feet by the fire pit, watching me and mom.

Then there were the rare times we made it to the coast. Oh, the smiles on my mom’s face when we got to do that. I remember one time, I think I was still in Job Corps but I can’t place what I was doing or when exactly it was for sure – memories being what they are, but I do know it happened because my dad has pictures, we went to the coast while I was living in Washington.

Dad huddled in his windbreaker with the camera while mom, Maegan, and I ran down to the edge of the water. It was a gray, windy day with a light, misting rain. Pretty normal for the coast, actually. We laughed, dug for sand dollars, and just had a great time. Mom’s grin was the biggest as we held up our finds for my dad to take our pictures. She laughed, ran around with me and Maegan, and was so happy. I loved seeing her like that.

A friend of mine, right after mom’s funeral, offered to paint a portrait of my mom from any photograph I could send her (she lived in Australia at the time.) Dad picked one from that trip, with mom laughing and the wind in her hair. I sent it to her, and about 3 months later, we got a package back from Australia. Inside was the photo we’d sent, and an incredibly well done portrait of my mother laughing. My dad kept it up on the wall until he remarried. I’ve told him when he dies I want that picture. He’s agreed I can have it.

He knows I’m not the one most hurt by my mom. My older siblings got that. I’m nine years younger than my next oldest sister and there were three older than me. (It went Clayton – my brother, Melissa – who passed away last year, and Amy – the one who’s closest to me in age among my older siblings…and she’s the one who’s nine years older than me.) But he knows that I bore the brunt of things so my little sister, who wouldn’t have understood any of it, didn’t suffer what I was. He knew I took the abuse my mom would have put on her, which in turn made me a bit of a bully towards Maegan at times because I didn’t think it was fair I had to do this for her, but in the end my protective nature towards my little sister won out and I continued protecting her for as long as I could.

When I moved out for good (or so I thought), when I went to Washington, I was terrified. Not only homesick, but because I was still Maegan’s protector. But at that point I was so lost in my own life, I didn’t realize my mom was already changing. I didn’t know that she was already seeking help, that she’d been reading a lot and had found out that my diagnosis of bipolar (when I was 16 – I was 22 when I went to Washington) was quite possibly her problem too.

My dad told me she found someone who listened to her and started her on a string of medications that at first made it worse, but within six months, they’d gotten her cocktail right and she was a whole new person. She could laugh, live, love, and wasn’t afraid of hurting her children anymore. Unfortunately, cancer took her before we could get to know this new mom better.

The others said their goodbyes but I don’t know that they ever really forgave her. I know they didn’t say that they did, even though she asked them. I was the only one who said I forgave her, though at the time I didn’t know if I really did. I don’t know that I have completely yet, but I am learning to let go of the negative and remember the positive. More and more I’m remembering the laughing, happy woman from my past, and not the abuse I grew up with. My thoughts are no longer focused only on that.

So, once more –

I love you Mom. Happy birthday! I miss you every day.

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.)

I am not a pickle jar

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Photo via Visual hunt

“I am bipolar.”

This is how I introduce my mental illness. Not “I’ve been diagnosed with bipolar 1” or “I have a mental illness.” I say “I’m bipolar.” It’s a label I give myself. It’s something I refer to myself as that’s seen as negative by general society.

Some labels can be seen as positive. “I’m a farmer.” “I’m an author.” “I’m a mother.” “I’m a teacher.” “I’m a singer.”

But these limit us. They indicate that’s all we are, that this is all we see ourselves as. We are multi-faceted with many interests, complex personalities, and a life beyond one thing. When we give ourselves labels people identify us with those single things. They don’t go deeper to learn more about us. Those labels also lead to preconceived ideas about us, and people expect us to act a certain way.

When I say “I’m bipolar,” people immediately assume I’m dangerous and unstable. They’re scared I’m going to grab some kind of weapon and kill people. Why? Because that’s what the media and society in general have trained them to think. When I say I’m an author, people expect me – as a woman – to be writing romance. Because that’s what women write. Very few people take me seriously as a science fiction author because “that’s a man’s genre” even though there are some awesome science fiction authors out there that are women.

Labels can also lead to violence. Muslims are all labeled as terrorists because of the actions of a small portion of religious extremists. People see them as dangerous and treat them with suspicion that often leads to attacks and even murders. This is because the label of “Muslim” means “killers.”

We need to stop labeling ourselves and others around us. If we must put a name to someone, then we need to break the chains of preconceived notions. We need to open our minds and learn how to look beyond the surface of those labels, to see what lies beneath.

Let’s talk social media

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Let’s talk social media. No, I’m not going to tell you all of the benefits or all of the drawbacks to it. You’ve heard all of those before and I’m sure you’ll hear all of them again. Instead I want to tell you what social media has done for me.

I am an introvert, I suffer from PTSD, and I am bipolar I. That doesn’t make it easy to be around people. I’ve always had a hard time making friends and keeping them. In fact, of all the friends I made during my high school years, there’s only one I still talk to. The ones from my college years are all gone.

I used to play in a table top RPG group. That was both fun and difficult at the same time. Fun because I could use my imagination freely. Difficult because I was around people that got really exuberant at times. Loud voices are one of my triggers so it could sometimes lead to me needing a few minutes of quiet to compose myself. A lengthy trip to the bathroom was usually my way of dealing with it. Or sitting inside while everyone else went out to smoke.

But we moved away from those friends and I became even more isolated. I was drowning in a sea of loneliness but was too anxious to do much. I tried going out with Tims but he and his friends were often loud and that didn’t help my anxiety. I didn’t know what I was going to do. Then came Facebook, Twitter, Blogger, WordPress, and Tumblr. And suddenly a whole new world opened up for me.

I met my two closest friends on Facebook – Joelle and Deborah. Joelle and I started talking when I asked a question about BDSM. Deborah and I started talking because we were in one of the same writing groups. Joelle and I now talk to each other every day through IM. Deborah and I exchange daily emails, she’s come to visit me once, and I plan on making a return visit since she’s only about two hours away from the farm.

I’ve also made a whole host of other friends, people who notice when I’m offline for a while. People who are there to talk to when I need a shoulder to cry on. If I post about my depression, they offer support. If I talk about something exciting, they’re right there to celebrate with me. They wish me a happy birthday, something my own family (other than my husband…he doesn’t forget) couldn’t even manage this year.

Social media has made it so I can socialize, have friends, and talk to people I’d certainly never have had a chance to before – such as my friends in Europe, Asia, and Australia. Hell, even in different parts of the US and Canada. I’d never have gotten to know any of you without social media.

Yes, social media can be a real time sink. It can be a distraction at the wrong moment. It can be used to bully people with impunity through anonymity. There is a dark side to it. But there is still so much good in it and I appreciate all it has done for me. And I want to thank all of you for your friendship and your care over the time we’ve known each other, as it has meant the world to me. I hope for many more years with all of you and one day to maybe even meet more of you in real life, with the ice broken because of our social media experiences.

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