Bodies are weird & everything is connected part 1

Laying in the dentist chair this afternoon trying to be comfortable and not being comfortable I realized a thing.

Maybe I’ll make random posts like this more often? Maybe? What do you think? Anyways.

My legs are (slightly) two different lengths and my torso is slightly longer than average….

I bet I’ve spent most of my adult life trying to account for lower back pain – so like making sure I have proper lumbar support – probably having a higher chance of lower back pain from the leg length discrepancy throwing off my hips and then other variables like breasts. By the way breasts get in the way of a lot of things.

Then, because of the leg and torso things, I’ve spent a lot of time not giving my neck proper support, because I can’t have both neck support and lumbar support in the same full back chair.

And then all of these things are (more recently?) made exponentially worse because of Fibromyalgia and lesions in my spine from Multiple Sclerosis and the pain caused by both of these.

So because of my leg discrepancy maybe I have significantly more neck problems than I would otherwise. Who knows.

Cats: Goodbye Leya May 2004-February 6, 2017

Leya was my “baby girl” for most of her life. She was even Miss Leya for a large part of her life. I adopted her in 2004 (I’m pretty sure that’s right.) when I came to visit Josh in Texas when I still lived in PA. A year or so later I moved to Texas (in June 2005).

Leya flew from Texas to central PA and then she drove from PA to Texas via the eastern half of Tennessee so we could visit family on the way. People on the flight found her utterly adorable. For those not up on their geography, we added a few hours to our trip because Tennessee is very wide. It seemed to take forever. Leya wasn’t named for Princess Leia, she was named for a person. I decided to give her name a different spelling, well because? Once she grew up, she was mini Leya as a kitten because she was so tiny but turned into a fat round cat.


You’ll see she’s laying beside a box of sandwich bags.

She was a crazy little kitten and she’s probably provided me with emotional support all my life. She was always there When I was living alone I would occasionally come home to find that a certain kitten had lots of fun. Like the time she dragged a full paper towel roll down from the kitchen table. She must have chased it all around the kitchen. There was paper towels wrapped around the table legs. Next is the vicious Printer Beast. It’s attack power is judging you. This picture is at least a few years old. In her prime before she grew into an old lady, she was adept at getting somewhere so that you couldn’t ignore her, but she wasn’t aggressive about it compared to some of our other cats.


Leya dealt with a lot too. One of our cats used to chase her about and because of that she stress-ate. She had a period where she freaked out for awhile from something. We think something happened in the apartment complex we were living in at the time when we weren’t home and it was super traumatic for her. She used to hide when people showed up. She was always more comfortable around women than men. When I look back it’s really hard to tell how much she actually liked other cats. She used to run and hide at the first crack of thunder too. You always knew when the storms were gone when Leya emerged from under the bed. She had all her little quirks like any cat but she didn’t have quite as many nicknames. Her best nickname was probably Darth Vader. She had allergies most of her life and eventually developed fluid in her lungs and tried to turn into a bulldog with extra tissue around her mouth. She sounded quite a bit like Darth Vader. When she was older, at some point, she chilled out. Instead of hiding because people were here she searched for pets. She turned into an attention whore. A lot of these pictures are Leya quietly seeking attention.


Leya also had talons because I have never successfully taught a kitten to accept nail trimmings.


I’m sure this was accompanied with lots of purrs.


As you can see, Leya had trouble relaxing too. Based on the couch and the bookshelf arrangements, this picture was probably in the last year or so.

Grumpy looking cat would kill you with her mind. I adore this picture, so very much.

These past few years Leya provided me a lot of important emotional support. Every time I felt like shit there was a cat beside me, not judging, just being present. A purring cat really does have positive effects on your health. She was comfort in so many ways. Anxiety threatening a panic attack? She was there to purr for me. I miss her, deeply. She was here for almost 14 years of my life. Because she spent a lot of time actually with me, I seem to have a lot of pictures of her sleeping, waiting for belly rubs.



Cats are experts at hiding pain but you know how they feel by how they look in the eyes.

Until the last few months she spent 90% of the time that I was in the living room on the couch, on the living room with me. In the end she split her time with me and the heated bed, unless I laid out the other heating pad for her. Then she was happy, mostly. About six months ago we found a large lump on her neck. (However much lump you see on the outside? That’s how much lump is on the inside.) We didn’t know how long it had been there because she was not petted on her neck on a regular daily basis. Initially the lump seemed to be a cyst. I had a bad feeling. Then it was getting bigger, and harder. Around the new year she was getting worse, she had a big visit to the vet for blood work, to try to get the cyst smaller by removing fluids from it – which didn’t really work, and treatment for her UTI – which she’d never had in her life. She was slowly going downhill until the last week or so. In one week she went from not eating dry food to not being able to swallow anything solid. At this point it was beyond obvious that the lump was aggressive cancer and had grown behind her esophagus to the other side and so it meant she could not swallow. Fuck cancer, we lost two cats in six months. One to slow moving cancer, one to fast moving cancer. Fuck cancer. Losing two cats in such a short period has made it even harder for me to cope.

Leya loved her belly rubs, but only from her people. As she matured, her circle of people grew to also be regular visitors. She also loved her food. She was a sweet girl, even the vet thought so. She didn’t do the whole lap cat thing but one of her favorite things was to lay on the couch between Josh and I through dinner and then watching tv every night we ate at home. If she wasn’t already on the couch, she would show up to sit on the couch with us as soon as Josh sat down. Literally.

This video is actually quite a few years old based on the wall in the background. Regardless it seemed like a great way to end. You might need to turn up your sound.

One last tidbit to leave you with… Leya was very sensitive. If she wanted to join you on the couch and you didn’t invite her on to the couch with you after a few minutes, she would walk away, with her tail down. If you called her back, then she’d come trotting back, with her tail straight up, and join you. It was adorable.

Fatigue

It’s not just being tired. It’s not just a long day or not sleeping well last night. It doesn’t get better with caffeine. It’s exhausting. It’s heavy. Being tired can be fixed with a decent night of sleep. If you’re lucky enough to sleep well – even most of the time. The English language is worthless, frustrating, horrible, for not having a big enough word to explain this fatigue.

It’s like the steel blanket things that you are covered with for x-rays, like at the dentist, except it covers everything. Your brain is filled with this thick soupy fog you can’t see through. Like walking through layers of snow and ice or trying to run in water. Try to make a decision, I dare you. It’s basically impossible. Any decision you do succeed at completing is also exhausting.

Everything you do seems to take double or triple the necessary energy and you don’t feel like you have any energy anyways. Standing is hard because it takes more energy than sitting. Your eyes might be blurry. You mind is blurry. Are you running on “fumes”? Is there anything left inside?

But you aren’t sleepy. You don’t want to sleep, except to escape this feeling and hope that you’ll feel better after you sleep. Sleep might fix this. Sleep might not do anything. You can feel like this after 7 or 8 hours of sleep. You can feel like after being awake just long enough to eat breakfast. Or you can go a whole day without feeling this indefinable weight.

It’s carrying a burden of indescribable weight and size. Sometimes moving around will help. Sometimes sitting still helps. You never know. Food can help but then you need to make a decision to decide what to eat and it all starts again.

It’s not like leg day, or working too late, or hangover after a late night. It’s a disaster. It’s exhausting to be so exhausted. You’re drained, low, crushed. You don’t know what will make you feel better. You’re empty inside but you’re not sleepy. You search for what will help but nothing is ever quite enough.

Then you go to sleep, hope you’ll get a decent night of sleep, and wake up the next day. It might happen again today too.

And then there’s the threat of this fatigue. It’s like that steel blanket is laid beside you and you never know when someone will walk by and toss it over you, without asking, without a word.

Lego is doing this neat thing with historical location statues

The salon we go to for haircuts moved out of a dying consumerism center (a mall) to a shiny newer bright and busy consumerism center which also has a Lego store. This is important cause it’s the only reason we were in the mall. They have posted at least a dozen Lego statues about the mall along with information on the site, the time it took to build the statue and the size ratio. Like the Liberty Bell was a 1:1 ratio. Apparently I forgot to get pictures of most of the explanations of the statues and I’m sharing pictures of just a few. Side note: each model was built by a team of at least 3. Some people were “master builders.” What are the qualifications needed and the typical salary of a Master Builder working at Lego? Anyways, random blog post about Legos now continues with pictures. 

And the Washington Monument. 


Few more. Here’s the Jefferson Memorial. 

And the Lincoln Memorial. 

Then models of the Capital building, the White House and the Supreme Court building were by far the most awesome and impressive. The detail was great. Seeing the kids Ooo and wow and woah at the different models was really nice too. Cute. 

Here’s the one close up I grabbed of the White House. 

I could have sworn I took a picture of the Statue of Liberty model but it’s not on my phone so I guess I didn’t. A few pictures for the Supreme Court are next. 

And the last set of pictures is the Capital building. It’s sad I’m not as familiar with these monuments and important government buildings as I thought. I hope the children – and some of the adults – learned something from these statues. Can’t decide I prefer to call these statues or models. The picture I took of the Capital building model from above 

Random cat pictures with some words too

The other day I feel into the rabbit-hole of my Google Photos looking for good pictures of our (MY) cat that we had to put down Monday (cancer sucks for every single living creature) and in that process I discovered some fun random pictures too. For shits and giggles I thought I’d put them here. This is best described as bittersweet so skip the captions/explanations if you can’t deal with that today. Also, I think it’s time to add “crazy cat lady” to my blog tags.


Picture of Tank from at least 4 years old. He died suddenly. He was always cute curled up because he had impossibly long legs. Being half Siamese probably helped?

 


“Human, don’t question why I’m in the dryer. You wouldn’t understand.” Murphy died from cancer but it was slow moving and he was here to be the grumpy old man requesting pets on his schedule for quite a few years.

 


Murphy, Tank, and Leya: top to bottom. They are so closely together because of catnip! We determined this picture is proof that the demon inhabiting Tank’s body was too much and that’s why he died so suddenly and so young. (If you don’t get it, don’t worry. If you do get it, you’ll be amused.) I was struck by this picture because we’ve reached the point in our lives where we now have pictures of multiple cats who aren’t here anymore. Murphy and now Leya died within 6 months.

 


And this picture is like the “Old Guard” and the “New Guard”…. it’s about 4 and a half years old? Murphy, Leya, and Codex, and Parker are all here. The kittens (Codex and Parker) are now almost five. Kittens vibrate, so they are blurry, everyone knows this.

Tracking where my pain patches are going

For over a year now, I think, I’ve been using the Butrans pain patch as part of my regular prescriptions. It has been life changing, literally. You apply/reapply this patch once a week. It stays there. You can get it sort of wet with few issues. I try to keep mine out of direct water but that can be difficult.

From the manufacturer’s website:

BUTRANS should be applied to the upper outer arm, upper chest, upper back, or the side of the chest (See Figure A). These 4 sites (located on both sides of the body) provide 8 possible BUTRANS application sites.

Personally, for me, I have to focus on my arms and back. I question if they did much work for locations on women, because breasts. Oh noes! Anyways, that’s another topic.

Because you aren’t supposed to “re-use” a site in less than 3 weeks I made this tracker or journal because it’s otherwise impossible to remember. When I was updating it again, I thought I’d share it. I actually type up the specific dates I’m to change my patch so since I change it every Monday night, the column on the left will include the dates of every Monday for many months. The left and right location columns are so that only have to write down “shoulder” or “back” in either column. It’s a little easier. I added a notes section in case you want to be able to note site reactions.

If you so choose, you can print this out or save it. (I’ve never shared a public Google doc. so I’m assuming you can save it for yourself.)

Here’s the link to the tracker.

New Patient paperwork 

I’m trying out an internist, which is different from a GP or PCP, and so I have another set of new patient paperwork to fill out. An internist is possibly more beneficial for me because of my high levels of comorbidity. Most of my medical history, medicines, and stuff, are actually already typed out into 6 pages. It’s formatted and organized. That means I don’t have to write out some stuff on new paperwork. More often though, I need it because there’s not enough room on the doctor’s paperwork. It’s also helpful because my hands will sometimes start to jerk involuntarily if I’m doing a lot of hand writing where I have to keep within specific formatting, like filling in blank lines. 

Side note: it’s interesting to see which doctors prioritize which diseases in past medical history. This doctor has AID/HIV (yes it’s a typo) but doesn’t have MS.  

So yea, this is my fun times so far today. 

Working on setup for my new Bullet Journal 

Every time I move to a new journal I make my journal a little more stream lined and I’ve learned a lot in the past journal. I think I started this October 2015 and this is my third journal. Since I’ve learned there are definitely some things better tracked long term or monthly instead of daily or weekly this journal might last longer too. 

Here’s my new one. 

Some things I’ve noticed. The elastic band closure for the notebook is wider and stronger. The paper isn’t exactly smooth but it’s very strong and sturdy. The book itself feels sturdy. I made sure to go thru and try to stress the spine evenly so the book won’t fall open to the same pages all the time. Can’t tell (yet) how to describe how it feels to write on. It handles the Faber Castell PITT artist pens well. The ghosting from the brush size pen is very obvious but not unpleasant enough to annoy me. I’ll have to check different colors of my uniball pens to see how the ghosting varies by color. 

I think I really like the grid lines. 

And the stickers came from Michaels. I bought them 50% off. Even though these are for the specific Create 365 brand of journals I think I can use most of these to add some variety to my bullet journal. 

I’ve been using a slip over the front cover pen/pocket holder thing but I might switch it to my doctor appointment tracking journal instead and keep my pens for my bullet journal in one of two other holders. The slip cover makes it difficult to write on the left side of the journal when there are pens in it which wouldn’t be an issue with my appointments tracking since I only write on the facing/right page. The green case will hold my ruler but the pens would knock around. The blue case holds pens or pencils more securely. 

They all have their own advantages and disadvantages. 

Let’s talk about notebooks for Bullet Journals

I’ve been keeping a bullet journal and adapting the techniques to my own life for now over a year. At least. I’m needing a new journal so I thought I’d do more research this time around.

Previously, I’ve used the official Bullet Journal, a Leuchtturm1917, and a Rhodia webnotebook. All of these have the dot grid style page. Rhodia has 90 gsm weight paper but the Bullet Journal and Leuchtturm both have 80 gsm weight paper (since Bullet Journal is made by Leuchtturm) and that’s not think enough for me. I really like the index and page numbers in the Leuchtturm but it’s not worth the trade off of thinner paper for me. I seem to have a heavy hand and prefer liquid ink. Though I’m also having a great experience with a Faber Castell artist pen. I would get another Rhodia except it has the least number of sheets (96), which is slightly offset by being able to use every page, but it seemed best to check my options.

I’ve also been using a pocket thing slipped over the front of the notebook to hold pens/etc. I could switch things up and attach this to my doctor appointment tracking journal instead. Especially since I’ve started favoring different pens in different journals. (I favor a lined book for that notebook but that’s another post.)

Thank you to the random people who wrote up great blog posts about what they thought were different options. Through a few google searches I found more notebooks than these listed here. Call this selection the finalists.

Rhodiarama Soft Cover Notebook – pretty, very pretty. The slightly larger size would probably offset the fewer sheets (80), but still these are kind of expensive. I love the paper in Rhodia books too – the look, feel on my hand, and how it handles ink.

Miquelrius Soft Bound Medium Journal, 300 Sheets/600 Graph Pages – The paper weight is only at 70 so I would definitely only be able to use one side of the sheet but it’s more sheets! Overall, I’m still getting more pages than the other notebooks I’ve tried. But, I’m not sure a fountain pen wouldn’t bleed through multiple pages and I’d like to be able to go back to using my fountain pen(s) more since they are (more) comfortable.

Northbooks Dots Hardcover Notebook – Then I found this one. It seems simple enough and has all requirements. The 89 gsm paper should fit my requirements and the 96 sheets are ok. But there’s nothing compelling here.

And I think this one is the winner:

Essentials Grid-lined Notebook – It has 100 gsm paper! Also, while doing my research I realized I’d like to try grid-lined instead of dot grid. It only has 192 pages but it’s $12.99 (full retail from manufacturer) which is a significant enough difference to make it more attractive than a Rhodia. Also, maybe the binding is better?

Tangent:

When looking up the Essentials Grid-lined Notebook on the Peter Pauper Press’ website I discovered log books that might be relevant to my interests. Daily Food Journal which could be used for symptoms for nailing down food sensitivities. The Book Lover’s Journal which might be something I want to help me remember books I’ve read. I’m not sure about the Daily Food Journal though, maybe just save it for the future. I’m more tempted by the book log book.

Maybe I’ll make another post when I investigate new tips for my Lamy fountain pens and find some alternatives to the ribbon bookmarks common in this style of notebook.

Just a regular day when you’re chronically sick

Or a day in one person’s #chroniclife. Or a typical day when you’re a professional patient. Or the opposite of a fun afternoon. Call it whatever sounds good I guess.

Left the house around 2:15 for a 3:00 appointment. Appointment is to have a very short in office procedure and see the doctor. Supposed to take about an hour total. Forced to valet because the first parking lot had at least four people circling that I saw, so there was probably more. The second parking lot was full. The third parking lot was at least a 10 minute walk and might have made me late so I was stuck going with valet which isn’t part of my routine because I like to sit in my car and have a snack before I leave. Grumble.

Check in at doctor’s office. Pay $300 between the copay and the procedure cost because my health insurance deductible isn’t satisfied yet. Wait 25 or so minutes in the waiting room. At least 20 minutes past my appointment time my name is called. Pro tip: If you have a doctor who seems to be always late, get the earliest appointment you can manage.

Medical assistant person does my vitals, tells me what to expect with procedure. (BP was good, yay!) Have problems with antibiotic and soap because of my allergies/possible reactions. Almost have a panic attack while I’m waiting for someone to come back into the exam room because I’m basically flashing back to the time an asshole doctor told me the diagnosis I clearly didn’t have, without talking to me. (He completely dismissed any of my symptoms and problems and excused me of not respecting him because I wanted to ask questions.) I didn’t want them to think I was trying to be difficult. When I realized I was near tears I recognized the panic and concentrated on breathing slowly for a minute or two. Thankfully that helped and I didn’t have to wait that long for someone to return.

Finally, 5 minute procedure is done. Get dressed. Wait for doctor to come back who, while I was there, talked to at least 2 other patients and made a phone call. I probably saw the doctor for about 15 minutes. 20 minutes absolute max. All my questions were answered and I was given a month of free samples of my med. This is a good doctor by the way. She actually called me “love” during my appointment. I have no idea if she typically runs late because it’s only the second time I’ve had an appointment with her.

Left the office, stopped at the restroom, and then left the building, ate a peanut butter cup, retrieved my car from valet ($4), and then set off home. Took about 35 minutes to get home. Traffic was lighter than I expected. On the way home I managed to miss every single gas station where I could stop to get water.  I was at the doctor longer than expected and so drank my liter bottle before I left the building. Should have bought a bottle of (overpriced) water at the gift shop. Ended up having “peanut butter cup mouth” all the way home. Home about 5:05. Soon as I got home I needed a snack before my blood sugar went any lower. The super simple procedure caused me enough pain that I’ll probably spend the rest of the evening on the couch – when I’m not doing chores. (Silly body, this pain is stupid.)

I have another doctor appointment on Thursday but it’s the chiropractor and he’s never been late.

Then on Friday I get my xolair shots and spend at least two hours at the infusion center.

Both appointments are a half an hour from home (one way).

I don’t have time to work.

Chronic illness forces you into the job you didn’t want (updated)

Some background first… Because I have health insurance through my husband’s employer I have no control over my insurance provider. As of the first of the year, our insurance changed, completely. We went from Cigna to Aetna. The Cigna plan didn’t have copays and the Aetna plan does. So on one hand, in the past after I satisfied my deductible and out of pocket (which has happened as early as March) I don’t have to pay anything. On the other hand, the Aetna premium is MUCH LESS but I have to pay every time I go to the doctor. With Cigna I could have my prescriptions (every 30 days) at my local pharmacy and after I satisfied the aforementioned requirements I didn’t even have to pay for prescriptions. Aetna also requires you to have all your prescriptions through their mail order pharmacy if you want to pay copays instead of 20% of the retail cost of the medicine – assuming I understand the insurance jargon correctly. Correction – see more below **: Aetna discounts the medicine by 20% and I have to pay 80% on the spot to be able to have the medicine that basically keeps me alive. My pain patches just cost me $372.24 for one month. Insurance saved me $69.05. I can file some kind of claim somewhere, somehow and get reimbursed some amount of money. I think?

Side note: I have a number of super expensive brand name medicines. All of them are super important for my quality of life or just straight being alive. The retail cost for my medicine that helps keep my migraines under control is a little over $1000.

Retail/local pharmacies process your prescriptions in like one to three days. It could take me over a week to get a new prescription processed with the Aetna pharmacy. Sure, it’s great that I can have 90 days prescriptions. However, I’d trade that for being able to easily ask a pharmacist questions almost any time I want without having to fight a confusing automated system that wants me to talk to it even though none of the options seem to apply.

All of this is the background for most of my yesterday. Yesterday I was making or receiving calls continually between 10:30am and about 1:30-2 pm. I had short breaks to eat. I had to call the Aetna pharmacy twice. I had to call the Aetna FSA twice. With each instance/department one phone rep was very helpful and one was the complete opposite. (One of the Aetna pharmacy phone reps had never heard of some asking to provide the pharmacy with their drug allergies and the supervisor I talked to was clearly wondering (“Why in the hell am I talking to this woman about this elementary shit?” She was not saying it very loudly.)

Anyways, I also started calling my doctor’s offices to provide new insurance and request refills on the meds I need soonest. For example, I used my last pain patch Tuesday night and they last 1 week. This means I have to make sure the prescription is sent to the Aetna mail order pharmacy but I also need to have a prescription for 30 days sent to my regular retail (now secondary) pharmacy. I probably have to do this four different medicines. All of them are at least a few hundred dollars each, at least the one over $1000 as mentioned above. I think I might also have to file claims for all of those medicines too and you can’t do that online.

Side side note: Mail order pharmacies, as well as FSAs that reimburse instead of allowing you to use the money directly assumes a certain amount of status and privilege. If we didn’t have credit cards I’m not sure how we’d pay for my meds this month. Also, this is why lifetime limits on health insurance benefits are very very very bad. I will have to get another medicine from the Aetna Speciality pharmacy. Depending on if you (if anyone even reads this) are an able bodied person who takes few medicines, or someone with a disease like me which requires extra special medicine, you may have never even known speciality pharmacies are a thing. I need to obtain my MS medicine this way. The last time I checked, in about a year and a half, maybe closer to two years, 90 days of my MS meds (Tecfidera) went from around $15,000 to almost $20,000. Assuming $20,000 that’s $80,000 for just one year of one medicine. You would think that pharmaceutical companies would want restrictions on lifetime benefits to continue to be illegal so that they can continue to make money off of their medicine.

So, all of these changes to my insurance and pharmacy options turned into working. I basically worked half a day and I ended up in pain from sitting still at a table for that long (not even in a hard chair). I also ended up with a tension headache. I didn’t ask for this job. No one pays me for this job. Sure, you could argue that I’m ultimately paid by my health being better – except that all of this costs me pain as well as physical and psychological energy that means I have less energy for other things. So it’s like I’m paying twice.

It’s still a job, regardless of what anyone says. It’s a thankless job that most people do not truly understand. It’s a horrible stressful job because it’s all full of red tape, corporations ultimately only worried about the bottom line, as well as doctor offices where often all the employers are overworked – and likely underpaid just like me? It’s even often an anxiety inducing job.

And all of this work doesn’t even account for the four to six other doctors I have to call and request refills from and or provide my new insurance too. I have a great deal more work to do in the following weeks

I didn’t ask for this job and I can’t quit it. I never have a day off. This is every day of my life. It doesn’t really have set hours either. (One of my doctor’s techs returned my phone call at 7:30 this morning. That’s outside of business hours.) This job doesn’t allow me to form any sense of community or connection and make friends. Basically, I’m a professional patient. Being a professional patient doesn’t have a clear job description. I can’t say that’s not part of my job. This job provides no sense of fulfillment because I have helped someone or created something – or any other reasons a job might provide you personal fulfillment – thereby improving your mood and quality of life.

It’s a horrible, stressful, and thoroughly unpleasant job and I wouldn’t wish it on an enemy and now I’ve spent almost an hour writing a blog post about an unpleasant day instead of doing something fun like playing Civ VI. This is why sometimes I just want to crawl in a dark corner, hide under a blanket and try to escape from the world.

Maybe in another blog post I’ll talk about all the paperwork and records organization I need to do on my own time that’s another part of my job as a professional patient.

Correction and updated added after I picked up some of my meds at the pharmacy. I still need to get one more filled and possibly pay over $800 for it. Also, Aetna lies. The 20% discount isn’t true for all medicines. I’ll save you the math. On the above mentioned pain patches, I was discounted 18.5% from the total retail cost. 20% would have saved made the final cost around $368.

Then I called Aetna RX again to try to get more information to understand this crap, despite my coverage information/paperwork saying that the cost is discounted, what I actually pay in a retail pharmacy is 100% of the “negotiated” cost. Negotiated means it can change whenever they want it too. It’s like my MS meds I mentioned earlier. Also, it takes 3 business days before they can “see” prescriptions requested by doctors but the phone rep couldn’t tell me why. We probably get to pay $800-900 for 30 days of my medication for migraines because of this “3 business days” BS.

Goodbye Carrie Fisher

I grieve for what she didn’t get a chance to do. In the next few days we are going to get flooded with people talking about Carrie Fisher. She made such an impression, I can’t even imagine. I realized I’d like to search Google for some good pictures of Carrie Fisher so that led to a blog post! One of the reasons why I loved Episode VII: The Force Awakens so much is that Carrie Fisher came back to Hollywood, she wasn’t young or pretty or skinny enough. She just was. And the scene where GENERAL Leia hugs Rey? I’ve always seen it as them making a connection, immediately. Kind of the way Chewie and Rey seem to make a connection when they are in the cockpit of the Falcon together.

I know/knew of Carrie Fisher’s work/advocacy for mental illness and always meant to look into one of her books but somehow never did. Priorities? Being too busy? I’ll probably get one now. I’m glad to know that filming on Star Wars Episode VIII was finished before Carrie’s death. That’s something at least. I’m sure I’ll be a mess when we go see it in theaters next year.

Now I’ll just rely on pictures being “worth a 1000 words” and leave it at that. I know, there could be tons more pictures. The first picture is the most powerful because it bridges generations.

To share how I self-advocate at the doctor?

I’ve been debating and pondering and contemplating how to share the things I do which come down to advocating for myself when I’m seeing one of my many doctors. Is it even worth doing? It’s different ways I cope with all the doctors I see and no one having anyone else’s information unless I make sure they send it. I have typed up information I provide to new doctors and old doctors periodically. I’ve just started using a journal to keep track of appointments. I even give my doctors lists of all my doctors – with at least their phone numbers.

There’s lots of little things I do too that are advocating for myself. Doctors need to be able to be willing and able to answer my questions, or at least most of them.

Should I make a series of blog posts about advocating for yourself, as the patient, with medical professionals?

Vitamin B6 toxicity

Recently, one of my doctors actually listened when I talked about how many B vitamins I take. Side note: I noticed it helped my energy and fatigue, also B2 can help with migraine prevention and folate can help with hormone stability but I have limited understanding of those.

Anyways, my doctor checked folate and B6 levels and found that my B6 levels are toxic. (I didn’t get the exact numbers, yet.) Most doctors say that because B vitamins are water-soluble you’re fine because your body will dispose of the excess. Except, not everyone’s metabolism is the same so this isn’t actually true. Maybe it’s okay on average.

I’ve never had my folate and B6 or anything else besides B12 levels checked. I have no idea how long I’ve been “toxic” in B6 or if I’m deficient in anything else. I know my B12 levels need to stay high and I know my body likes it when some other vitamins are high too. (High in the normal range.)

B6 toxicity can do lots of different things.

From Mayo Clinic:

Vitamin B6 may cause abnormal heart rhythms, acne, allergic reactions, breast enlargement or soreness, changes in folic acid levels, decreased muscle tone, drowsiness or sedation, feeling of a lump in the throat, feeling of tingling on the skin, headache, heartburn, loss of appetite, nausea, rash, recurrence of ulcerative colitis (an inflammatory bowel disorder), stomach discomfort or pain, sun sensitivity, vomiting, and worsened asthma.

Over this year I’ve had my migraines and asthma change. I’ve also been having unpredictable and erratic GI symptoms. I’ve had a difficult time with PT and trying to build muscle strength, more so in the last half of the year than the first half of the year. I have no clue at all whatsoever if these problems are because one or more of my diseases/disorders have changed or if it’s the B6 toxicity, or BOTH.

In the last month or so I’ve had some minor problems with balance too. I wonder if it’s the B6? Or my MS?

Also, I have no idea how long it takes B6 to come done.

Other helpful looking links (I didn’t look too close at these though)…

http://www.livestrong.com/article/317889-vitamin-b6-toxicity-symptoms/

http://www.easy-immune-health.com/vitamin-b6-toxicity.html

http://lifewithb6.blogspot.com/2015/10/dont-take-b6.html

November 2016 My NaNoWrimo

How did my NaNoWriMo go? I wrote almost 28,000 words. I’m very happy with what I accomplished but I am a little sad I didn’t “win” with the 50,000 words. My month was also way crazier than I wanted/hoped for.

Accomplishments:

  1. I wrote 27,871 words of a novel. It was not my original idea, I changed my mind and then did not have enough time to do much outlining. That’s 27,871 words I’m still willing to look at and add to in December instead of just wanting to ignore the hideous conglomeration of ideas that may or may not belong together.
  2. I finally have my own personal set up in Scrivener for novel’ing, especially during NaNoWriMo – or when I don’t have that much outlined. I have to figure out how to make it a template and also update the character templates with more information/options.
  3. I started with clearer more fleshed out characters and what I wrote is less of a disaster and more of the start of something I can manage to finish.
  4. I can write 800 words a day fairly reliably regardless of how crappy or tired or exhausted I feel, as long as I have a decent outline or an idea of where to start.
  5. Stayed sane and didn’t freak out about my trailing word count.

What else I did in November:

  1. Attended a Lindsey Sterling concert. She’s a fabulous performer. She’s intelligent, funny, adorable, and down to Earth. She’s great with a violin too. I recommend her youtube channel for writing. Great music and something you can also watch if you happen to get stuck or need a break.
  2. Saw Dr. Strange. It was still a typical Marvel movie and therefore good and worth watching again because it was entertaining. However, I think the Dr Strange character was flat compared to other heroes in the Marvel universe, and other characters could have also had more depth/detail. I feel like the characters suffered because they needed more screen time for all the neat special effects.
  3. Saw Arrival. Fantastic movie! I cannot currently remember the title of the story it’s based on but I have it on kindle now and need to read it. I’m pretty sure Arrival inspired me to add some things to my novel. (I can’t remember now.) I recommend this movie, especially because it had a female character trying very hard to keep the world from going to shit (further).
  4. Took one of our cats to the vet. Discovered she has a tumor pressing on things in her neck. This is not good news but it’s probably not cancer at least.
  5. I had five different doctor appointments that were all specialists. In my experience specialist appointments always take longer. One appointment took 4 hours from the day – but was very productive. Another appointment took less than an hour from the day but was horrible and stressful and I cried in the car. (not going back there) There was also an appointment that involved receiving trigger point injections in my neck – much needed – but resulted in no computer use that day.
  6. I had two physical therapy appointments. Those last an hour.
  7. Learned the counselor I’ve been seeing for therapy for at least the last two years is on medical leave until further notice. Well, I had a lot of shit happen in October and was really looking forward to the counseling appointment I had scheduled the first week of November. Scheduled with a new counselor who may or may not work out for me.
  8. I had two chiropractic appointments. These were my first two ever appointments with chiropractor (and receiving acupuncture).
  9. There was, I think, two different visits to labs for blood work.
  10. There was getting a haircut and some shopping too.
  11. Read some comics and finished reading Ready Player One. The book was not amazing but it was solid. I enjoyed the world and plot, and the author’s attention to small details. I recommend it.)
  12. I dealt with six different migraines or headaches. None were severe so I would have averaged “losing” half a day and not being able to accomplish much. Severe migraines are losing 1 to 4 or more days to pain management.
  13. Went to knitting group twice because socializing is health, at least in small chunks and getting out of the house for something besides going to the pharmacy, grocery store, or doctors is vital to your sanity.
  14. I finished a number of knitting projects, including a baby gift for a previous coworker. (Good people receive hand knit gifts.)
  15. I re-visited/re-tried a coffee shop that’s not $tarbucks and managed more than one writing session outside of the house. yay!
  16. Of course there was Thanksgiving.
  17. And how could I forget Election Day and the rest of the week and being sad and scared about the unknown coming for the next who knows how many months or years. Will I lose my health insurance? Will I lose any rights or access because I’m a woman or will I be safe because I’m white (and married)? Will any of my friends be in more danger because they are different?
  18. Then there was a few days with major weather changes that affected my ability to focus because of causing me more pain and other similar problems.
  19. Started a few new knitting projects too, including some gift projects that aren’t on ravelry yet. (I should fix that.)

So, that was some exciting stuff, some totally normal stuff, and eleven medical/health related appointments. I had wanted to keep this month clear of doctor appointments and I hoped for less headaches. Neither happened. Basically, I had wanted no more than two appointments each week.

After four different doctor appointments this week, time spent with a friend, and time spent with my husband outside of the house (dinner, shopping, etc.) – I guess there’s no surprise that I am TIRED. Fatigued. Exhausted. Sore. I plan to spend December focusing more on knitting. I have three (smaller) gift knits and I want to swatch for my first adult sized sweater (for myself!)