Health

So, I promised I'd post about my health issues.  It's a roller coaster!

I was diagnosed with Crohn's Disease via emergency surgery due to bowel perforation in August 2004.  I have now had two bowel resections. My last one was in August 2015, but I had been hospitalized from mid-July until that surgery.  Currently, as of September 4, 2018, this is in remission.  I still have symptom flares, but they have also been attributed to other diagnoses like IBS and confirmed food allergies. (I know; as if the list of food I'm not allowed to eat due to the ileitis wasn't already extremely long, I get to add foods I'm allergic to.  I'll post that list lower in the post.)

I was officially diagnosed with endometriosis in January of 2017.  I now have to avoid soy as well.

Some endometriosis diets recommend eliminating soy from your diet. This is because soy contains phytoestrogens, which are plant compounds that can mimic estrogen.

Polycystic Ovarian Syndrome is also tied in with the endometriosis.  Originally all of that was just labeled as "dysmenorrhea", or "painful periods".... They have both also helped cause issues with iron deficiency anemia. (THAT however is under control.)  We tried the six month Lupron injections, chaste tree berry, and I'm now starting to go back on The Pill (orthocyclen) and will be taking it so that I only have periods every three months. Supposedly that should help with the cysts/endometriosis/"dysmenorrhea".

 I also suffer from PTSD due to childhood abuse, some that my family doesn't know or remember, some still due to being raped in December 2012. I'd thought I'd "gotten over" that but then something happened to my daughter and brought it back.  I've suffered from depression my whole life, but it turned to postpartum depression and I attempted suicide when my oldest was 6 weeks old.  I was officially diagnosed with anxiety a few years back too. Maybe more than a few years, but it's been within the last decade.

As if all of that isn't bad enough, I also suffer hidradenitis suppurativa (and just "regular" hidradenitis).  It isn't fun.  Currently I'm fighting constant cysts under my left arm. Originally they were in my right one.  Rarely I get them in my lower regions, but they do happen.  (The regular "hidradenitis" and cysts occur occasionally in random places around my body, but aren't in the HS regions.)  With the cysts, I also have been fighting a MRSA diagnosis.  (The docs all say that it's still okay for me to be crafting/teaching as long as I'm not fighting an "active drainage," even though open wound or not I'm placed in quarantine if I'm in the hospital.)  I'm allergic to the sulfa-antibiotics that are most responsive. I'm waiting for the day they decide to hospitalize me to give an IV treatment to be rid of MRSA for good.

That's enough skin issues, right? NOPE. I also have psoriasis.  It's mainly on the back of my head and neck. It ranges from a tiny speck of red to a five inch or longer streak of scaly scabs and inflamed skin.  I also have the dry patches on my elbows, knees, and ankles.  It's been around since I was a kid.  (My kids then inherited eczema from me. YAY.)

I've been officially diagnosed with fibromyalgia and also arthritis in my lower lumbar region.  Hip dysplasia and I get regular cortisone injections in my knees.  The hip dysplasia doesn't help that I also suffer from "hypermobility;" the tendons get stuck inside the joints if I'm in certain positions for too long. Sometimes they give me problems even just moving wrong to get comfortable in bed.

I've got horrid eye sight and hearing, which also leads to migraines, vertigo, and migraine induced vertigo.  Did I mention I'm asthmatic as well? I'm also allergic to a lot of pollen. Some of our local, native trees, molds, and particular herbs that people sometimes smoke.  (I am mostly okay with their oils though.  YoungLiving essential oils have been a blessing as well.)  I wear hearing aids now.  The doctor said my hearing/nerve damage is worse than the average 80 year old.

What have I left out?  I feel like I'm forgetting something.. I no longer have that cyst on pituitary gland, though I'm still fighting a deficiency with it. They are slowly weaning me off of the hydrocortisone (Cortef, SoluCortef) pills now.

I also have high blood pressure, which is mostly due to the constant pain.  I also get to suffer from orthostatic HYPOtension, due to the blood pressure meds and moving too quickly between different positions.

I currently receive 2 hour infusions of Remicade every six weeks for the Crohn's/IBS/HS/psoriasis.  I didn't respond well to the Humira.

Am I forgetting anything?

• Crohn's Disease
• IBS
• endometriosis
• PCOS
• arthritis
• fibromyalgia
• hip dysplasia
• hypermobility
• hypertension
• orthostatic hypotension
• food allergies
• environmental allergies
• asthma
• psoriasis
• HS
• iron deficiency anemia, vitamin D deficiency, pituitary disorder/cyst/adrenal microadenoma
• PTSD
• depression
• anxiety
• poor vision and hearing (glasses and hearing aids)

I checked MyChart, and they've also added hyperparathyroidism and hyperprolactinemia.  I don't even know what those are or when/how/why they were added.

Hyperparathyroidism is a disorder in which the parathyroid glands in your neck produce too much parathyroid hormone (PTH).

Hmm.. Okay.

Hyperprolactinemia is a condition in which a person has higher-than-normal levels of the hormone prolactin in the blood. The main function of prolactin is to stimulate breast milk production after childbirth, so high prolactin levels are normal in pregnancy. Prolactin also affects the levels of sex hormones (estrogen and testosterone) in both women and men. Prolactin is made by the pituitary gland, a pea-sized organ found at the base of the brain.

Looks like a lot of the other conditions I fight and medications for them can lead to they hyperprolactinemia too.  That's interesting.  Thank you, internet, for this information.

Looking back over the list, and I STILL feel like I'm forgetting something! It may just because I have so many diagnoses.


Did you go through and check out how badly restricted my diet is unless I take medications just for food intake? My food allergies include:

• dairy AND lactose, I can't even get away with goat or sheep products
• egg whites, but I'm okay with egg YOLK
• pork
• tomatoes and peppers, they're in the nightshade family same as potatoes, but I'm okay with potatoes?

I'm okay with gluten, though.  But that was my entire diet (excluding pork; I've been avoiding red meat since the first bowel resection) for a while. It also explains why the elimination diets didn't work for me.  I was always still on at least one of those foods.  It also explains why the IBS medications weren't working or why I was still having symptoms although the Crohn's Disease was/is in remission.

Publisher Issues

So, apparently PublishAmerica, which became AllStar Books then America Star Books or something like that, was bought out and/or went bankrupt.  They are no longer returning authors' attempts at contacting nor are they giving authors the royalties that they should be getting, whether ebooks or hard copies of their works. The new publisher is also not printing our manuscripts.

(https://writersweekly.com/angela-desk/options-for-america-star-books-authors)

Unfortunately, we also can't take our manuscripts to other publishers due to our contracts--they could come after us and sue.  So, it looks like there won't be another Tichion book or any copies of it at all.

I have to change everything if I want to continue on that story.  Sherrilyn Kenyon had had to do that at one point as well with her League series, if I remember correctly. At least, I think it was the League series.  I adore that one, but I'm more obsessed with the Dark-Hunter series.

I'm trying to figure out what to do now with new story lines that I've been working on but procrastinating on finishing.

I'm not the only author fighting a battle either. Here's a post by Brenda Perlin. Deanna fought too. Writers Beware has a post about it as well as Victoria Strauss.  Here's a comment on the latter blog, which she does have a newer post:

camille

April 10, 2018 at 11:26 AM

The owner wiowner, back in June of last year sent me an email saying name change again
It was to become Paperbackservices. Well the emails with new address never came. The website is gone. The radio station is up for sale they are gone. I sent an email in reply to both the old and the new address he supplied. I have received a “can not send” from google for the new address but the old one sems to have been delivered. I wrote that my rights have now reverted back to me since they have defaulted on our contract by going out of business. See what happens next…

 So, there you have it.  I think my term of contract is up, but I can't find the copies of it to verify.  And no way of contacting whomever is in charge, or was in charge, to find out.  I'll just continue to work on my pieces and then look into publishing at a later date.  I also heard that you can get your books printed and bound without getting an ISBN through quite a few different places, specifically from a fiend working at OfficeDepot, with some stipulations.  It is better to still submit it to the Library of Congress to obtain an ISBN and avoid copyright issues.

It's Not Too Early For Halloween!!!

I LOVE Halloween.  As soon as I see products out on the shelves at the grocery store or craft stores, my fingers start curling with need. I need to buy them all! (Which is a slight problem with not having an income to support that...)  My home decor has taken a more fall theme the past few years.  Rich cranberry red, pumpkin or burnt orange, brown.  It just makes me feel cozy.

I have a friend who goes ALL OUT for their parties.  Every one of them has a theme and then it's too the extreme.  It's a cosplayers fantasy.

This year's Halloween them is Disney's Haunted Mansion, but also including the equivalent themes from the Disney parks across the globe.

Let me just say that https://family.disney.com/crafts/ has been an AWESOME place for ideas and legit, free pdfs.  I've been working on the sliding chamber bookmarks and Tomb Sweet Tomb gift boxes.  I won't be able to attend the party itself, or I'll at least be more than fashionably late to it. My husband and I have a wedding to attend to in Nashville, IN that evening.  The party is in the historic district of Irvington, IN.  (We live in Greenwood, IN.)  With all of my health issues, I might be done for before we make it back to our side of town, let alone getting me up to Irvington.  My husband wouldn't go with me--he has some social anxiety and doesn't know most of the "normal" crowd at the house and this will also have a lot of extended friends from other groups that I haven't even met, so I can't ask him to go with me and be uncomfortable.

We also have my kids that weekend, so there's that.  Luckily my mom will be keeping them for the wedding, but I'm supposed to pick them up before they go to church, so I am even more unsure about making it to the party due to that.  I'll need at least four hours of sleep before driving up to Southport.

Back to Disney.  I've saved a ton of those pdfs from the website to use for later parties. Y'know, when my kids actually have friends contact information for parties.  Currently our school district doesn't allow for invites to be given at school, even if you're inviting the whole class, which became a thing a while ago. You couldn't just give invites to your friends because bullies or leaving people out and making them outcasts. All about the inclusion, y'know. 

I wasn't ever really included in things even when I was part of groups back in school. Sure, it hurt, but I'd made my peace with not being popular.  I've now embraced my weirdness, and there are times that I wish I had more adult contact outside of the internet and my immediate neighbors, but my eclectic strangeness can be overwhelming for some people. I also tend to have "diarrhea of the mouth", where I just spill everything and anything about my life to people.  Once I mention something, then it all just starts spilling out.  People don't tend to know how to react with my life story, even if I only give a little bit.  I've been through some stuff.  I'm in counseling though. So it's not ALL bad. And it's all made me into who I am.  A better person, maybe? I don't know. Whatever.

But seriously. Go check out that website (here it is again).  There's a lot of amazing things there.

Wake Me Up When September Ends

I love that song. After the year I've had, it fits though.

I saw a vlog by another blogger recently on Facebook (I'll have to go back and find the link later; she's on YouTube as well) about ideas to use extra notebooks for.  Let me just say that I have a major love for office supplies. If the journal has a pretty design on it, it's even worse for me. I hoard yarn, beads, and office supplies.

She suggested using a notebook for just brain dumping the day. Another for writing down your dreams or how you're feeling at the beginning of the day. Another is used for "a month at a glance", where you just summarize the events of the month, or week.  Then even another for things that have happened that you were thankful for. There's sketch books, but you can also doodle in notebooks as well. Songs or poetry.  Story brainstorms, timelines, planning.  I'm going to use one for taking notes on gaming as well, since I've gotten back into that. (I'm playing World of Warcraft; Lothar server. Mostly alliance, but I've got a blood elf I'm working on leveling too.)

You could also use another one for prayers or your daily devotions, if you do that of course. Not trying to push any religion on anyone.

I've also purchased and been using a health journal. You can get yours here. The woman originally started the journal for her husband during his cancer battle which started before their wedding but the diagnosis came immediately after their wedding.  There is actually more than enough spots for doctor contact information. With all of my health issues, that's a HUGE deal for me.  I never have enough spots for my doctors or my diagnoses.   There's also daily spots for how your symptoms were each day, things to talk to your doctor, pages for your current medication lists.  It's just incredible.  I wish I'd bought this YEARS ago (although she just started them, but I could have designed one too). 

If I'd picked something like this up earlier, I possibly wouldn't still be fighting for disability.  I should tell y'all about that sometime.

But that's enough of that for now!  I'm going to make another post for the awesome things I've been working on for a friend's Halloween party!

I hope the year has treated you better than me.  I'll post about that another time as well.

Happy 2018!

Another year has flown by with me not posting ANYTHING on here. 

I'm an absolutely horrid author.

At least I don't have any true followers, right?  Just family and friends that occasionally poke at me about my stories. 

Although, in making friends at my local coffee/tea shop, I met an artist who has some freaking amazing work.  As soon as I remember, I'm going to be taking her some of my concepts.  She'd been very adamant about working on art for some of my books.

I just have to get them written, right?  I just have this horrible connection between my brain and either my mouth or my fingers and I can't get these amazing worlds to come out!

There's Tichion that I still need to rehash out, or just start completely over with a new name for that world.  The one on the other side of the mirrors?  With the demons and the tech between the worlds...

Then there's Bloo. Oh, my beloved Bloo--the world that friends created in high school that we all role played and my crafting hobby-business came from.

I've also been toying with some "urban romance" ideas--those psuedo-paranormal romances.  I've been doing some research to make some sense of what I'm trying to work out, but it's going to be a doozy.  (Did I just say "doozy?")

And then, of course, there's the ever popular "mom" book.  The "my kids are insane" book.  The "I don't have enough coffee for this crap".  (I can't drink coffee, by the way. Health issues. So, can someone chug a pot and send their energy to me?)


This year has to be different. In so many ways, I need it to be different.  It's starting with me flying to Japan all by myself and leaving my children behind for a month.  Once I get to Japan, I will be with friends, but the trip will be my first alone, let alone out of the midwest and country.  (Have I ever mentioned that I've never left the United States? I finally have a passport, so hopefully that will be happening frequently now.)  I don't speak Japanese, althought I'm trying to learn the bare necessities and quickly. (Thank  you, Google and Duolingo!)  I'll have a layover in LA and China on the way to Nagoya and then again in Nagoya on the way back.  I'll be gone for almost the entire month of February, flying out of Chicago on January 29th, landing in Nagoya on the 31st. 
I'm a bit panicky about that.  Again, I have a LOT of health issues and I only speak English, very minimal Spanish, and even less Japanese. 

Where's the bathroom? バスルームはどこですか？Basurūmu wa dokodesu ka?

Water: 水 mizu

Oh, and I can count to ten, in theory to 99, in Japanese.  But that's about it so far.  (I'm slowly catching on about "desu"...)

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What I'm reading:

Laurell K. Hamilton's Anita Blake series (book 26 is due out August 2018)
Sherrilyn Kenyon's Dark-Hunter, The League, and Chronicles of Nick series
Lori Foster's Jude's Law, Murphy's Law, and her Fighter series
L.A. Banks' Crimson Moon series. (I cried when she passed away and I re-read her series as often as possible.)
J. K. Rowling "The Cursed Child"
Tiana Hanson's "Battle Lines Drawn"
Karen Marie Moning's Highlander and Fever series