Friday, June 24, 2016

Mario Marathon '16


Mario Marathon for Child's Play Charity is LIVE!

Join the shenanigans at MarioMarathon.com, watch, chat (with me!),
and/or donate to Child's Play via the link in the top of my sidebar.

For the kids!

Saturday, June 18, 2016

Bad HKPP Episode, and Nightshades

I had a big episode last night after eating mashed potatoes. Not only is it a simple carbohydrate, it is also a nightshade vegetable. I decided to research nightshades due to the fact that people have said they can cause muscle problems, and what I learned was very disturbing.

They're cholinesterase inhibitors, which can cause everything from inflammation to dementia. Other cholinesterase inhibitors include pesticides (HUGE dangerous HKPP trigger in me...one of the worst!) and even some teas. If pesticides wipe me out (and believe me, they do with a vengeance), it makes sense that nightshades would do the same.

List of nightshades and other risky produce:

tomatoes
potatoes (not including sweet potatoes or yams)
eggplant (also called aubergine)                                      
peppers (all varieties except white and black peppercorns)
goji berries
huckleberries
blueberries
gooseberries
cherries                
tobacco
paprika

Beware of spice blends, which usually contain red pepper and/or paprika.

There are a few other no-no plants out there, like Petunia and Belladonna. Feel free to Google if you want to look into it further. The lists are all over the net.

I've concluded that I need to address the following:

1. A trial of nightshade elimination, perhaps for several months to see what happens. I can give up potatoes and berries. It's the tomatoes and peppers that will prove to be a significant challenge.
2. Switch exclusively to organic produce to avoid pesticides, which can seep into the vegetable or fruit, making rinsing kind of pointless. Of course it depends on what you're talking about. For example, strawberries are on the danger list, but onions are considered safe due to their skin and protective layers.
3. I already know to avoid carbs, but I can't eliminate them altogether because my blood sugar drops (which causes serious problems in itself). I limit them already, but the mashed potatoes were an obvious mistake. Noted.

This isn't going to be easy, considering my diet is already strict, but I will make it happen if it will help. I hope I never forget how miserable I've been since last night...the pain has been unbearable, I've barely been able to move my legs or sit up due to severe weakness, and it has been difficult to breathe. Typing isn't exactly a walk in the park either, but I felt this was too important not to blog about as soon as possible. (My arms are furious, though.)

If you have HKPP and you have eliminated nightshades, I'd love to hear from you about your experience. ugottafriend4life@gmail.com

I'm off to drag myself to the kitchen for more potassium. Thank God my apartment is small and I have a rolling walker. I have been having an incredibly difficult time lately, and this setback has been no help. I missed a family reunion today and I've missed many other events over the last few months thanks to a decline in my condition. A power chair is on my wish list for Santa this year. It's time.

Wednesday, June 15, 2016

"Where there is no vision..."



I've been in a dark place. I was there well before the Orlando shooting occurred, and even before the rapist scumbag and his disgusting low-life parents in California inundated my social media, but those events certainly haven't brought any hope in the despair. My sadness over everything that has been happening lately in the world and in my own life is deep, and I am exhausted.

I'm making an effort to keep breathing and do my best to climb out of this valley. I have been through some bad stuff - perpetually unlucky, according to friends who've been around a while - but I know I'm also fortunate in many ways. I tend to be overly aware (I suppose some would call that self-conscious) of my feelings and the fact that I need to pull myself together and get a handle on things. Sometimes, I succeed. Sometimes, I don't. This is one of the don'ts.

I've got nothing. I can't think of a thing to say or do or plan to do or even hope to do. I strive to always have goals so I have something to move toward, something to look forward to. I'm drawing a blank. I feel mortally wounded. Defeated.

I haven't given up. I reach into my cloudy head every day in hopes of grasping something worth holding onto. When migraines and sleep deprivation allow, I read fervently and listen to music. I eat when my body can handle it. Those moments vary. Occasionally, I overkill and eat too much. In fact, I need to lay off of candy once and for all - there's a mini goal if I've ever heard one.

I'll figure out it. At least I think I will. I often don't believe that. I've never felt like I belong in this world. I remain steadfast in that, but as I always say, I'm here and I'm doing the best I can. Sometimes my best sucks, but it beats the hell out of being six feet under, doesn't it? I guess that's all I can ask for.

Tuesday, June 14, 2016

No News Is Good News, I Suppose

I was trying to remember if the doctor told me I would receive a letter with my test results regardless, or only if the test was abnormal. So I called the nurse for a quick confirmation. I asked the person who answered, and she said the nurse would have to call me back. The nurse called back and I happened to be checking out at the store, so I missed the call. She left a rather annoyed-sounding voice mail for me to call her back if I wanted. No thanks...I'll pass.

So I assume the test was normal. I waited two weeks, and I know the results only take a week. I'm relieved that the surgery I had in 2010 is working so far. I just wish I wasn't in pain all the time.

As long as things don't go south, I won't have to return for tests for 3+ years.

Monday, June 13, 2016

Orlando Love

Sunrise at Rosen Shingle Creek
October 2013


There are really no appropriate words
when something this terrible happens.
All I know is my sadness is profound,
my love for Orlando is bigger than life,
and I cling to hope that, somehow,
we will never see this happen again.

Friday, June 3, 2016

June Is Always A Roller Coaster

I cannot believe in less than 30 days, we'll be half way through 2016. The Gulf Coast has heated up immensely now that Summer is around the corner. Whew, it's already pretty hot, y'all. Hurricane season is upon us as well, and it is a time of nervous anticipation for those of us who don't live in safe zones. Tension certainly has been higher than usual here at the apartment complex, with neighbors in my building and surrounding buildings fighting. The cops were finally called yesterday, but they only sat and watched for a while, then left. Naturally, the bickering and threats resumed today and is ongoing. Ah, the joys of public housing [/sarcasm]. I'm unarmed and just want to be left alone, so I stay away from almost everyone most of the time.

My little sister will be the big 3-0 on the 12th. My polar opposite, that girl. She's upgraded from World Dominator to Jo's Mama. Jo holds the title of World Dominator now, without a doubt. That child is a phenomenon.

Of course, all of my nieces are the greatest. I'm unashamedly biased.

On the 18th, my baby bro Max will be gone for 20 years. It is unfathomable to me that it has been that long. If you're new here, he was 8 months old and died of SIDS. I was 18 when it happened. It crushed my dad, stepmother, and entire family beyond repair...we've never been the same. Max was such a sweet little angel, and we miss him. Crazy that he would have been 21 this October.

And now my youngest living brother, at age 22, is about to become a father for the first time, and it will be a boy - my first nephew. I'm still trying to wrap my brain around the fact that this man was once the spunky toddler asking me through his pacifier to paint his fingernails, ha! Middle age has snuck up on me like a ninja in the night, I'm here to tell you.

We have a family reunion this month. I'm hoping I'll feel like cooking up a storm. I rarely get to cook for anyone, so it's an opportunity I don't want to pass up if I can help it. Of course, I'd like to see a few folks, too. I'll also be donating a painting to the door prize, as requested. We'll see how that goes.

My divorce anniversary is the 22nd. I still consider it one of the best days of my life. I'm grateful to live in a country where legal, permanent separation is granted in spite of the hyper-religious nature of many in our legislation.

I hope someday to live in a world where people don't allow themselves to fall under ownership in hopes of achieving their idea of love. Thankfully, I learned from it, and I haven't let it happen again. I'm more free today, even in my current circumstances, than I've ever been with someone else. It saddens me to see some of the people I care about making the mistakes I made, but sometimes all we can do is stand aside, let people walk their own roads, and hope for the best. If you're in a relationship, I root for you with a sincere heart. May your love be healthy and happy.

Waiting Mode (TMI of the female variety - fair warning)

I went to the lady doc to check a couple of things. She didn't feel anything particularly alarming and told me that I can wait until I turn 40 to begin mammograms, so that was a relief. I'm still waiting on pap results, which is sent via U.S. Mail within two weeks.

The relevance of bringing this up on my blog is that Mom had a fast and aggressive form of cancer, and I have already had to have polyps removed myself (in 2010, those of you who were reading back then probably remember my uterus rants). She had both cancer and Periodic Paralysis, and was gone less than 6 months after her first abnormal test.

Thoughts appreciated that I'll handle the results, whatever they may be. I'm in a notable amount of pain (more than usual), but I guess it could be complications of systemic disease.

I'd like to think I'm a fairly patient person, but I hate waiting for medical test results. :-/

More blogging ahead...talk to you soon.

Saturday, May 28, 2016

On This Episode: HKPP, Myotonia, Depression, Love, and Living Alone

Yes, the title is a play on words. I'm recovering from another episode of Periodic Paralysis, complete with myotonia in one leg and the rest of me mildly paralyzed. The pain when myotonia strikes is a 10 on the pain scale every time, resulting in yelling and nausea/vomiting and nearly passing out. Then I can't put my leg on the ground for hours or sometimes days because it's so drawn up. Occasionally, I am unable to keep food or drink in me for a day or three...that's where I am at the moment. Somewhat mobile again, but not functioning.

My body completely revolts when the bad episodes happen, and life is just terrible all-around. I face this alone, and my feelings fluctuate between being thankful nobody is here to have to deal with this and anger and despair over my loved ones' complete lack of understanding. I realize there isn't a thing anybody can do for me, but a thread of "give a damn" would be kind. At the very least, I would feel like it matters whether I'm dead or alive. I'm not feeling it. I haven't for 30 years. The name of my memoir is "Invisible" for a good reason. 

I read a lot of articles about love. It's an interesting subject to me, but I don't expect I will ever put the things I've read or learned into action with the exception of friendships, which are more important than I can express and I guard them with my life. I manage to be a dreamer and a realist at the same time. I lie in bed and imagine a different me, but the reality is that this is the me I'm stuck with and I'm glad that there is no man (or child) feeling trapped, anxious, and/or resentful. I refuse to coexist that way...I cannot do it. I am an empath and I would feel more sorry for my significant other than for myself, to the point of detriment. I know me. I love people just like anybody else. Dare I say, I am more passionate than some people, without a doubt. My love is intense.

And because of that love, I would never drag an innocent soul into my personal hell.

Monday, May 23, 2016

If you knew my story...

I'm sure I stepped on some toes with the last post, but it needed to be said.

If you knew my story - everything I've seen and heard and done and been put through as a result of religious fundamentalism - my anger and disgust would make a lot of sense. For over 30 years, I was a doormat to a wide variety of obsessive-compulsive control freaks. I've held in my feelings to the point of implosion.

That point arrived when my mother died, and has been continuously fueled by the constant stream of religious abuse I see in the news and all around me.

I am still theistic, and this is not about God. It's about selfish people using God's name to serve their desires and justify their sicknesses.

If I live long enough to write a memoir someday, I'll tell my story.

And you will either be self-righteously offended, or you will understand.

Either way, I won't regret it.

Thursday, May 19, 2016

Divorcing Delilah

I used to greatly admire FM radio's "Delilah", but I finally acknowledge she is among the ranks of the Duggars. She admitted live on air to being the cheater/abuser/control freak in her marriages, including physical violence, but because God forgave her, it's ok now and she somehow has the authority to give marriage advice on the radio that amounts to, and I quote: "You need to stop trying to fix your marriage. Let go and let God. Stop trying to reconcile and give it to God. Let him do the work. If it's meant to be, he will fix it." On the same night, she also talked to a woman who called in and said she was repeatedly violent in domestic disputes, and Delilah actually sympathized with her over the loss of those relationships. I was already aggravated at her for degrading a disabled man when she accused him of mooching off of the system, but this was definitely the straw. I yelled "Shut-up, Delilah" and turned off the radio.

Conditioning people to believe that a supernatural force, whether good or bad, controls your life decisions and circumstances is the biggest, lamest, laziest copout for personal responsibility ever created by humanity. This mindset justifies abuse, neglect, and immorality by saying "Everybody makes mistakes. I'll just blame it on somebody else and expect the situation to presto-chango by shaming and manipulating the victim into forgiving and forgetting." As if they could, or should do such a thing to appease their offender.

It's complete bullshit, and I will never support someone with this mindset again if I am aware of it. People like this are the reason why there is so much suffering under the umbrella of religion, and even worse, why there is little hope of it ever going away. Why change when Space Daddy says you're A-OK?

Thank you, Pandora Radio, for my new 24-hour 80s station.


Cross-posted to Thoughts & Theories

Wednesday, May 18, 2016

Internal Medicine vs Renal Clinic Labs (alternate title: My Body Is An Idiot), & PTSD

These labs were taken only 7 days apart.
Labs are from the same company in 2 different clinics in 2 different states.

Renal Clinic 5/5: Creatinine was normal, WBC was high, sodium was low, potassium was 3.9, phosphorus was low.

Internal Medicine 5/12: Creatinine was high (indicating kidney failure), WBC was normal, sodium was normal, potassium was 4.2, phosphorus was even lower in spite of starting on a supplement.

The potassium doesn't surprise me at all. I purposely took 40 mEq potassium chloride right before my lab draw to see what it was doing. 4.2 is normal, but I function best in the 5s. Unfortunately, I haven't seen the 5 range in years thanks to the progression of my condition.

I upped the sodium a little in my diet, and it worked. It's very easy to go too high or too low where sodium is concerned, so it's a constant roller coaster.

White blood count is back to normal. Most likely, they were slightly elevated (barely, not a big deal) due to a mild UTI that has since resolved. (I'm still sick with my sinuses, but my white blood cells apparently don't care). This is something I keep an eye on for the sole reason that a doctor almost diagnosed me with Leukemia when I was 20. I still remember how scared he was that it was Cancer, and how relieved he was to tell me it wasn't.

Creatinine...I don't even give a damn anymore. If it's going to fluctuate like that every few days, forget it. It's not even worth documenting anymore.

Phosphorus - I went to GNC and bought a supplement, and my levels went DOWN? How's that for some stupid BS. My body is an idiot.

Ok, breathe. Let's take an intermission from this rant fest to give a round of applause to my Magnesium level, which is holding on for dear life in excellent normal range. Good job, Mag.

I had a post-traumatic stress event a few days ago. I won't go into detail publicly, but I'm just mentioning that it happened. This is not quite the same thing as a panic attack, I've learned, as PTSD episodes are the result of something that has happened in the past, as opposed to a panic attack which is defined as having no known cause. It took me by complete surprise, and I'm beyond disappointed that it occurred, but all I can do is continue to be real about my life and do the best I can. I am unable to be medicated due to the serious HKPP symptoms anti-anxiety meds cause, so I'm up a creek where treatment is concerned. I applied for counseling in 2014, back when I had a social worker, but I never received a response to my application. I figure if they're that busy or careless, it's not worth it. Maybe I'll look for other options.

I think we're all a little broken inside. Some, a lot more than others.

C'est la vie, mes amis.

Friday, May 13, 2016

The Good, The Bad, The Ugly...It's Time For Multiple Medical Updates


I'm not able to sit up and type very well, but I'll do my best here:

I had renal clinic on the 5th. My electrolytes are still lower than they need to be, in spite of heavy supplementation, so things remain concerning on that front. Believe me, they could be a lot worse, but they also need to be a lot better if I'm going to function at my best (which is well below average to begin with). The problem with ion channelopathies is that lab numbers aren't an accurate reflection of how I should be feeling. My potassium can be 3.5 and I'm fully paralyzed, whereas a normal person with potassium level of 3.5 is ok. That really complicates things, and it's hard to explain to a doctor that life isn't that great when my potassium level is 3.8 or my magnesium is 1.5 or my sodium is 134 or my phosphorus is 2.4. The numbers sound acceptable for the average person, but I'm in agony, unable to drive or perform basic household tasks, and barely able to use my limbs. There is nothing standard about this disease.

My renal doctor and I discussed the failure of Keveyis. We are both disappointed that it didn't work out, but I was quick to let her know that A)I'm not the only one who reacted badly to it and B)There are people who are doing much better on the drug. It really boils down to the individual's body and its ability to tolerate sulfonamide diuretics. We already know I barely tolerate Diamox, so with Keveyis being more potent, the risk for me was high. Still worth trying, obviously, as treating this disease involves a lot of trial and error. That's simply the nature of this rare and unpredictable condition.

My kidney function is otherwise stable, and she is "thrilled". She said it's incredible how well I'm managing all of this. I told her I didn't feel like I was handling it (or anything else) well at all, but she disagreed. She said anyone else wouldn't be able to take all of this in, proactively fight with so much knowledge, or know what to do to cope with such a serious disease. Dr. M is a very optimistic person, and I appreciate that.

I also appreciate a friend driving me to and from Jackson. I was ill and would not have been able to make it on my own, so I'm super grateful for the help.

I had internal medicine on the 12th. We discussed my Vitamin D, and I'm waiting for labs to come back to see if I am finally within normal range. Vitamin D toxicity is possible with the average person, and can be detrimental. That doesn't appear to be something I'll ever have to worry about, since 100,000 IU a week still didn't bring me up to par. I'm on 150,000 IU a week now, and have been for a few months. I'll update when I have the results, but Dr. B said this is something I will probably be fighting with for the rest of my life.

In addition to needing follow-up labs (will update on those Monday), I arrived absolutely miserable with upper respiratory mess and urinary tract pain. I even saw blood at one point, which was alarming. I had a mild UTI at renal clinic the week prior, but as of yesterday, it had cleared up. We're pretty sure my UT issues are kidney stones. I told him I've passed over 40 (I stopped counting at 40) and he sympathized. He checked out my vitals, breathing, coughing, and we agreed to keep me away from antibiotics unless I get worse. Antibiotics inhibit neuromuscular transmission, and in my case, always result in life-altering weakness and paralytic episodes. The last time I was on antibiotics, my stomach paralyzed and I couldn't keep anything down. I ended up in the ER twice, and needed daily assistance from relatives for almost two months. Needless to say, we're avoiding the blasted antibiotics if at all possible. He's hoping prescription strength sinus and allergy meds will get the junk out of my head and throat.

Unfortunately, these meds are kicking my butt also. Insert sad trombone here. I can't take OTC sinus and allergy meds without HKPP symptoms, so you can imagine how well prescription strength is going. But the reality is, if I don't get rid of this mess, I'll end up on both these meds AND antibiotics, which would be potentially catastrophic. Yay systemic disease! Thanks for making my life impossible, jerkface.

So I'm laid up in bed, at least for a few days. I'm really hoping this won't linger for weeks this time, so wish me luck.

Saturday, May 7, 2016

The Battle Against Periodic Paralysis Article Update (New Link)

I finally uploaded my article, The Battle Against Periodic Paralysis, directly to my HKPP blog. This solves the issue of my article frequently disappearing from various freelance and pdf sites.

The Battle Against Periodic Paralysis

It is also updated in my sidebar. Feel free to share.

I had renal clinic this week, and will have internal medicine next week. I've decided to wait until after that appointment before I give a medical update.

I appreciate my readers. Thanks again for riding this roller coaster with me.

Thursday, May 5, 2016

Thoughts on Uninformed Judgment of the Handicapped



People who don't understand muscular dystrophy or other disabilities have a hard time wrapping their head around the fact that some patients are capable of independent life, including driving, if provided the resources and support to do so. The uneducated public would look at this man and listen to him speak and assume he's too handicapped, perhaps even mentally impaired, but they would be absolutely wrong.

Muscular Dystrophy can greatly affect cognition (we call it brain fog), just the same as Diabetes can, but the diseases have no effect on overall IQ.

Years ago, I had an acquaintance who responded to the greeting of someone in a wheelchair very awkwardly at a public event. The acquaintance runs a non-profit organization, but said she didn't know whether to acknowledge the lady, citing that she assumed the lady was intellectually disabled because of how she looked. As a disabled person myself, I was pretty horrified by that reaction, and it turned out the lady was independent with a non-profit business of her own!

The point is don't make uninformed assumptions about people who are different from you. The best approach when meeting someone like Ira (or me) is to assume we have the capacity to be standard members of society. If the person turns out to not have that capacity, educate yourself and act accordingly, but at least you didn't treat a perfectly capable individual like they were inadequate. How insulting that would be, and it's something they would never forget.

Thanks for reading.

Wednesday, May 4, 2016

Tuesday, May 3, 2016

Good news for Periodic Paralysis patients on Keveyis

Taro contacted me yesterday concerning changes to their sale of Keveyis (dichlorphenamide), and asked that I share with my readers. I am pasting part of the email here. As you may know, when Keveyis was first released to the market, it was listed at over $150 per pill, with patient assistance available to those who qualified. They are now stating that they plan to offer Keveyis to all patients who need it regardless of ability to pay. Please share with everyone you know who is affected by the distribution of Keveyis for Periodic Paralysis. This is good news, and we owe many thanks to Taro for making this drug available at no charge.

---

Taro Pharmaceuticals announced earlier today that it will change its approach to providing Keveyis (dichlorphenamide) to patients.

In the near future Taro will make Keveyis available at no cost to distributors for fulfillment. We are implementing a number of changes to make this possible, including absorbing all costs associated with manufacturing the medicine and halting of all commercial sales and promotional activity. Our press release is available at www.taro.com , please feel free to share it with your social media networks.

Taro brought Keveyis to market for the treatment of periodic paralysis because we thought it was the right thing to do, and we still do. As a voice for the periodic paralysis community, we want to reassure you that Keveyis will remain available. In the near-term, patients will continue to receive their medication through Diplomat as we evaluate best options moving forward.

While there are business-driven reasons for this decision, it remains consistent with our desire to ensure anyone with a prescription has access to the medicine regardless of insurance status or ability to pay.

You and your readers may have questions related to this new structure. I encourage anyone with questions to send them to PeriodicParalysis@taro.com. We will answer every question possible, but please understand that some questions will require more time to answer than others.

---End

Monday, May 2, 2016

Hello May: Another Stream of Random Ramblings

I've decided I need a cat named Eleanor Rose after Eleanor Roosevelt. Too bad I can't have pets.

I made a reference to "crocodile tears" the other day, and was informed by a friend that crocodile tears means that you're being insincere. I never knew this, and now I'm horrified because I have no idea how many people think I'm a jerk for referencing crocodile tears when I actually was crying and meant it - ha! Lord. I even Googled my own blog to see how many times I've talked about crocodile tears here, and it was a lot. Epic fail. :( I've edited or deleted some of those posts. Just know that if I've said I was crying crocodile tears, I was actually serious. Good thing my friends are around to keep me in line.

I had to cancel dinner with my stepdad, brother, and sister in law on Saturday because I was so ill. I'm having a really rough time with migraines, nausea, sleep deprivation, and muscle weakness. It's May, and I am really hoping the warm weather will improve my condition. If it will EVER stop storming, that is. Low barometric pressure certainly isn't doing me any favors.

In spite of how poorly I'm feeling, I have gotten a heck of a lot done around the apartment, including repairs, general cleaning, and rearranging. More to tackle after I recover from renal clinic. Will post pics soon, maybe.

I checked with that cute apartment complex in Bay St. Louis to see where I am on their waiting list. Still #35. My name isn't moving in the right direction (I was originally #22), so that's not good news. They have a rule that Mississippi residents, people with kids, and the elderly take priority, so needless to say, I expect to never live there. As far as other locations, I am only on one other list, which is Biloxi, and I am rock bottom. All other waiting lists I've checked on are closed in both Mississippi and Alabama. The reason for still needing to move is that my insurance doesn't cross state lines, and with my specialists being in Mississippi, that's where I should be even though it's not where I want to be AT ALL. I don't want to be in Alabama either, mind you. My heart is divided between Louisiana and Florida for multiple reasons.

In better news, I will receive a small allowance in food assistance for the next 12 months. It will cover my daily protein drink supplements and a little bit of meat, which is usually poultry. The low-carb/high protein/fat diet is still on for now, but I will continue to discuss it with my specialists and monitor my weight closely. Being on a medically-specific diet is challenging on such a tiny budget, so I'm grateful for the help. I'll elaborate on the diet more later.

I won some beautiful art supplies on Twitter. Folks on Facebook have already seen it, but I'll do a video blog as soon as I feel up to it and post it here.

I received an email today about HKPP drug Keveyis, for those who may be interested. I'll share it tomorrow.

Dad and Polio

My biological father was the lone survivor of 11 babies in his neighborhood stricken with Poliomyelitis in 1952. He was saved via advocacy from the March of Dimes and a team of doctors, surgeons, nurses, and physical therapists who worked hard to give him quality of life. He spent his early childhood in a wheelchair and late childhood on crutches and in braces, Forrest Gump style, until he could walk on his own in his mid teens. He married soon after, divorced, married again and started having children in his 20s. He would divorce, remarry, and continue to have children into his 40s, thus my tribe of half-siblings. He also worked full time at Chevron refinery, was a Scout leader, and a volunteer baseball coach. He died young, but when you look at the big picture, he was pretty lucky to have accomplished all that he did.


Polio is almost eradicated worldwide, thanks to Jonas Salk and his vaccine, which he chose not to patent. His selflessness has saved countless lives. May we not take it for granted.

Thursday, April 28, 2016

Goodbye April: A Stream of Consciousness

April is a hard month, and I'm glad it's almost over.

To be honest, April, May, and June are all hard months.

My migraines are back with a vengeance in addition to my usual chronic muscle pain, and it's difficult to cope with life when in severe pain head to toe around the clock. Not to mention the sleep deprivation, which I believe is slowly consuming me. I'm just so tired.

Although currently in physical and mental turmoil, I still believe I'm doing the best I can.

Sometimes, I think a big hug would be helpful.

Then again, I'm in too much pain for that.

I've made a to-list for the next several weeks, which includes renovating some of my blogs and getting rid of others. I'll let you know what I've done after I've done it. I don't expect this blog to change much, if at all.

I actually have quite a few blogs. Some have been neglected, like my food blog. Maybe I'll bring it up to date and share the link. I'll think about it. I also have a lot of updating to do on the art blog, as well as the Etsy store. I may put a few things on eBay as well.

Camp NaNoWriMo is pretty much over. I exceeded 10K and added it to my previous totals. I write a lot of nonsense and notes in addition to the actual manuscript, but once I'm done, I do expect the finished product to be novella-sized. I've got to get more sleep so I can focus on this.

I have several art projects planned as well. But first, I am spring cleaning the apartment. My closets are beginning to look like closets again, so that's kind of exciting. I must really be getting old to feel good about the condition of my closets.

I still haven't had a Coca-Cola since Mardi Gras. I want one every day, especially with these migraines, but I have resisted so far. I do drink a lot of tea.

Renal clinic is coming up. I may have a driving buddy. Hopefully that'll work out. I haven't hung out with her in many years. The trip to and from Jackson will give us plenty of time to catch up. It's Cinco de Mayo, so hopefully I will feel like stopping somewhere along the way for some quick festivities.

I've got to figure out my diet. It's a bit rocky, and my weight is at a standstill. As long as I don't gain, I won't freak out. I do have 15 lbs or so to lose, however, and that sounds so easy, but it seems to be one of my biggest challenges. Being on a high protein, fat diet is the culprit, as well as my inability to properly exercise with Muscular Dystrophy, but I am still holding onto hope for a solution.

I've resigned from American Christianity until further notice. Sorry for not elaborating a while back when I said I was going to. It hasn't been easy to write about. Still theist, but I will not associate with jerks who are dead set on mistreating those who aren't like them. I have family and friends suffering because of this, and my own story is long and painful. I will tell it eventually.

I finally installed curtains in my apartment after a year and a half.

Midori the Gypsymobile is suffering a bit. I hope she hangs in there for years to come, but she's definitely slowing down. God bless my big 'ol Buick.

I've reached 1100 questions on Ask. I have a feeling I've blocked one or two of my askers, so things are pretty quiet these days. At any rate, if you want to ask questions, feel free. I still check it fairly regularly. The only things I don't talk about are sex and specific relationships such as an ex, relative, or friend. Getting that personal crosses the line.

Every time I say I'm going to take a break from Facebook, I end up not doing it because I'm a loser with no willpower. Sometimes, I post even more than I did before I said it. I should probably stop saying it now, you think? I really am going to take a break, though. Maybe.

If my health hadn't plummeted, I would be obtaining my first of two Masters this month. College nearly killed me (literally), but I miss it and I miss planning my future. I was proud of the goals I had laid out.

I wish I were well so badly. I don't understand people who say they embrace their disease or are somehow thankful for it. Screw that. Systemic disease has robbed my life. I live far too alone, in far too much pain, with far too many limitations to sugar-coat this. It's hell, and I don't think I should be judged or criticized for feeling that way. I've never been a ray of sunny sunshine wrapped in rainbows and butterflies, and I don't expect to morph into one in this lifetime. At least I'm real.

And I'm still very grateful for what I do have, in spite of it all.

Tuesday, April 26, 2016

Four Words


Don't listen to them
You are not possessed
These people are delusional
Your illness is legitimate
You need real answers
Church is a scam
They are manipulating you
This isn't your fault
You deserve much better
STAND UP FOR YOURSELF

Thursday, April 21, 2016

"Dearly Beloved"

"...we are gathered here today to get through this thing called life."


Stunned. I got nothing.

Wednesday, April 20, 2016

Thursday, April 14, 2016

On Grief and Judgment


I almost forgot that I talked about Mom last year. I really don't have anything to add to it, other than to talk about grief. A club nobody wants to be a member of, grief is a deep and multifaceted process. I've seen on social media (a cesspool, I realize, but I digress) on several occasions the rituals and remembrances of people's loved ones being criticized, including my own losses. Someone I grew up with, who sent condolences after hearing about my mother's death, later made a snide remark in response to the above-linked post that nobody wanted to read my emotional crap. Why she felt it necessary to seek likes and comments at my expense all of a sudden is beyond me. She had been out partying that night and decided to check her news feed at some point. I told her I wouldn't forget what she said, suggested she stay offline while she's intoxicated, and we haven't spoken since. In response to me posting photos on another account of my family's gravesite, someone snarked "What kind of person takes pictures of their dead relatives' graves?" That would be me, and by the way, what kind of person sits in front of a computer screen and judges others' grief?

As you can see in the photo above, there were some smiles. There were also some tears, and some really hard, horrible times. When I announced her death two years ago, an acquaintance simply said "whatever", as if I was giving her too much credit by being devastated. The woman gave birth to me. Sometimes I wish she hadn't. Sometimes I still get angry and ask God why things happened the way they did. I ask why my parents had children when they so frequently rejected us. Some questions are already answered. Others may never be, and while I do my best to move forward, I will probably never stop asking.

Let me get to the point: grief involves not only a tangible loss, but also a loss of possibilities. People mourn the death of a loved one, because they loved them. They can also rightfully mourn for what could have been, should have been, and will never be. Hope is everything, and to helplessly watch it fade away forever is life-changing. There is no reconciliation. There is only emptiness. To deny someone's personal journey with profound loss, you must either lack empathy or live an incredibly charmed life. Not understanding something doesn't give you a license to be ugly about it. Respect is a basic human right.

Here's the thing: this road is mine and mine alone. Nobody else belongs there. There may be others who are impacted, but their grief process is individual to them and mine is individual to me. Nobody gets to tell anyone else how they should be reacting or feeling or coping with death. All opinions are invalid. In a nutshell: know your place.

I am here because she gave me life. I will always miss my mama.

Friday, April 8, 2016

Fulfilling Relationships (via Good News Network) and thoughts on boundaries

"Be open to new people and situations but trust your instincts. You never know where a new relationship might be found whether it’s a new business connection, a potential romance or a new friendship. When you open yourself up to new opportunities you give the right people the chance to meet you, but trust your instincts and verify that new people entering your life actually share your values."


"Set your own boundaries and don’t be apologetic. For your own health and sanity, it’s okay to say no or tell someone they’ve pushed you too far or asked for too much. If you know it is time to cut the cord—be bold, direct and firm. Unless you want them to hang around and play the victim, don’t fall into the trap."

http://www.goodnewsnetwork.org/fulfilling-relationships-life/

This is a decent article on bringing the right people into your life and dealing with the wrong ones. I read a lot of articles like this. I think it's important to understand the psyche of relationships of all types, especially friendships in my case, to remain aware of what I and others are setting on the table.

A lot of people previously in my life had no concept of boundaries, and considered themselves attacked when I set them. They were so used to their self-made superiority and manipulative ways, they tried to make me look like the antagonist for standing up for myself. Some of them still do. They want so desperately to be the victim in the game they were playing, but little do they want to admit that it was never a two-player game. They were all by themselves in their heads, and they ran out of quarters before they even asked if I wanted to play along (answer for future reference: I don't). Oops, game over. You lose.

I'm thankful for what I've learned over the years. As hard and horrible as some of those lessons have been, I'm glad I'm finally starting to put my health, safety, and sanity first. I'm not sorry for that; I'm only sorry I didn't do so much sooner.

I have such wonderful friends, including several new friends that I've recently made, that I wouldn't trade for the world. They've taught me more than they realize, and I am better for knowing them. Without a doubt, more changes are ahead in my world...hopefully all of them good.

(Vagueblogging is therapeutic sometimes, don't you think?)

xoxo

Monday, April 4, 2016

More birthday shenanigans, and what's going on this month



I received a coupon for a birthday haircut.
So I got a birthday haircut.
It takes an absurd amount of conditioner and smoothing oil
to not look like a frizzy, crazy, poofy-haired hag.
I've never liked short hair on me, but people tell me this isn't short.
Beauty is not my genre, friends.
I'm guess I'm low-maintenance.
I just want to sleep, OK?





My stepfather took me out to lunch for my
birthday (we finally managed to meet up after Easter).
I had my first rib-eye steak ever. Yes...EVER.

Then we went to Hobby Lobby.
He had never been there before. Yes...NEVER.
He was overwhelmed, and I was too weak to go around much of the store
but he insisted on buying me some art supplies.
I chose watercolor, because it's something I want to pursue.
He has always been my biggest fan where Art is concerned
and I appreciate his support more than I can express.

Oh, and the world map was only $5.65. I've always wanted one. :)



I had dinner with friends also, and they threw me a party.
The food was great. I was given a nice card and this lovely gift.
I have such thoughtful friends. They used to be in my Bob Ross
workshops (it's been five years since my last class...hard to believe).
I'm glad we're pals. My students are still the best, and I miss them.



I can't believe I haven't mentioned this on the blog at all.
My brain is so fried from sleep deprivation.
I participated in #TwitterArtExhibit!
I sent a colored pencil postcard to Trygve Lie Gallery
in New York City. It's on the wall with hundreds of other
cards for sale with 100% of the purchase benefitting a
great non-profit called Foster Pride.
It was a cool thing to be a part of!





These video blogs are so pathetic, y'all. Haha.
21 minutes of pointlessness. Enjoy if you dare.

Edit Note 7:45pm: The appointments mentioned the above vlog were canceled. I mentioned the reasons why on Twitter, if you want TMI. Next doc appointment will be renal clinic in May.

Friday, April 1, 2016

Back to Camp



Yep, I'm doing it again. NaNoWriMo in November was pretty miserable, and I said I was going to take a long break and not do NaNo again for a while, but here I am. Not a surprise, if you know me. It turns out four months was enough of a rest. I'm set up and ready to crank out 10K words. The great thing about Camp NaNoWriMo, as opposed to Official NaNoWriMo, is that you set your own word count goal. Official NaNo is 50K, but Camp can be anything you want. There is a lot less pressure during Camp. Truthfully, there's little pressure with either one, but Official NaNo feels more like a competition (even though it's technically not). At any rate, I prefer the nature of Camp NaNoWriMo.

I don't think a word of that made sense. Oh well, it's a fitting paragraph for the weird day I've had.

I'll post a few blogs this month, but I am hoping to focus mostly on the novella. I'll keep you in the loop, though. I hope Spring is treating everyone well. I have yet to see improvement in my condition, but I'm trying to remain optimistic.


Friday, March 25, 2016

Birthday Week Grub

I have plenty to say these days, but I'm not going to drag on and bore you to death. So here is a quick post with a few pics about one of my favorite things - food. LOL

I caught a tremendous sale at the grocery store and ended up with more pork than I usually eat in a year. I try not to consume it often, due to its relationship with sodium and how poorly the body digests it (this applies to everybody, not just me), but I made an exception this time.

Being a Taco Tuesday fanatic, I decided to make pulled pork carnitas.

Boy, are they good. I've got four small bags in the freezer now, and I will probably make my first attempt at tamales soon.

I still have a pound of sausage and a huge roast to utilize. I'm planning chicken and sausage gumbo and Hawaiian BBQ pulled pork soon. It will be shared with friends and/or relatives.

I wasn't sure if I could stay on my feet long enough, but I managed to get out of bed Wednesday morning and make myself a nice "birthday" breakfast.
This photo does not do this meal justice at all. It was pretty, and this pic isn't pretty. The lighting in my apartment is poor, and I am not a photographer. Oh well. If you're not sure what it is: loaded omelet, sautéed onions and beef summer sausage, honey balsamic mustard, and sweet cream grits (that's polenta to you non-Southern folks) topped with oven-roasted corn. Good grief, it was great. And it was way too much food, and I had to go back to bed. LOL

(I would have had to go back to bed regardless.)

I rested for a while, then made my way to a diner that I hadn't been to in a decade, in hopes of having the meal that I always used to order there.
And I did. And it tasted exactly the way it always did. I even got lucky and landed the same waitress who was there all of those years ago. She is the sweetest, and a flawless food server, and it was nice to see her again.

As you can imagine, I practically crawled home after all of that food. I couldn't possibly eat like that on a regular basis, but it was my birthday and I was spending it alone, so I decided to treat myself.

More festivities will happen this weekend, hopefully. I'm still weaker than I should be, and extremely tired, but I've made plans to visit my stepfather and a couple of friends. I'm sure we will eat and laugh and have a good time. I'll try not to fall asleep on them.

As I said on Facebook, I'm grateful to have survived another year, and I have every intention of not only making it to the big 4-0, but celebrating in a big way. If I am able to travel, I'd like to see Florida again. Maybe I'll have a book ready to publish by then also. I'd like to cross some items off of my bucket list. In the meantime, I'm going to focus on feeling as well as possible and keeping my sanity intact.

I'll post again soon with my plans for the Spring.

Thursday, March 17, 2016

St. Pat's Day


I'm not feeling very human lately, but I am grateful to be functional for a few hours a day. I'm not participating in any St. Patrick's festivities, but I managed to dress like I was celebrating. I have a beautiful block of Kerrygold Extra Sharp Irish Cheddar in the fridge, and it will become cheese soup eventually. Not able to do it today, but I'll live. I did have more than my share of potatoes for breakfast and lunch, so I guess that counts for something.

My stepdad is taking me to dinner for my birthday, and I hope and pray I'll be better company by then. Irish blessings to all who accept such things.

Love,
Kelli (who is a quarter Irish, thank you very much)

Wednesday, March 16, 2016

Triage, Tests, Muscular Dystrophy, CKD, Lent, Blah Blah Etc.

On March 9th, I choked pretty badly on some soup. It was excruciating, and I almost had to go to the emergency room. Although painful, I was able to breathe and swallow, so I decided to wait about 13 hours and go to my local triage instead, which is thankfully run by my own physician.

My lungs looked okay, but Dr. B was concerned about my esophagus. I was in terrible pain, nearly in tears, in my back and chest. Toradol, Phenergan, and Lidocaine didn't touch it. I was given a GI cocktail that didn't make me choke, scream, or get sick, so he decided that I didn't need hospitalization. He sent me home with a script for pain meds (it has been years since I've had a pain script and I don't usually get them filled, but I did it this time), and I was ordered to report back immediately if the pain gets worse or if I start coughing up blood. So far, I haven't had any additional trouble, but I'm still hurting a lot. The pain medication hasn't done much for me other than aggravate my muscular dystrophy, so I've already discontinued it. I can't win.

I received copies of my recent blood work. Magnesium is okay. Creatinine is still high, and it seems to be staying there. Not outrageous by any means, but not normal. I'm having panels done every three months to monitor things. That's really all we can do. Sodium is unusually borderline high, and I am pretty sure I'll have to back off of the Asian food. My sodium likes to sit pretty low due to all of the diuretics I'm on, but my sudden love of Madam Woo's chicken dumplings could be contributing to the change. This may explain why I am chronically weaker than usual, but it may not. Whatever the case, the decline is something I must figure out and get a handle on quickly.

I gave up soda for lent (yes, I do call it soda. I may be from Mississippi but I refuse to call everything Coke. It's irrational. Have a nice day. Oops, by the way, I really am talking about Coca-Cola...LOL). Lent is something I've never participated in before. So far so good, but I've been cranky ever since and my migraines are back with gusto. Not good news. I know I've done the right thing, as there is absolutely no reason why I should be drinking carbonated sodas, and in spite of the terrible headaches and the terrible mood, I plan to stay off of them altogether. 

Tea is a different story. It's entirely possible that a glass of tea will be pried out of my cold, dead hands someday. I'm not proud, but I'm also not sorry. :P

Next appointment involves womanly stuff - something I'm pretty terrible at. I'll try to do the world a favor and not blog about it.

Saturday, March 12, 2016

Just Tired.


Me.

Every day.

It's almost Spring, and my strength should improve at least a little.

Bring it on.

Tuesday, March 8, 2016

Miss Cranky Pants went to another convention

This past weekend, I received a pass to the 39th annual CoastCon in Biloxi, Mississippi. It's nearly identical to Biloxi's Geekonomicon, but has apparently been around decades longer. If CoastCon were one of a litter of kittens, it would be the runt. No offense. Runts are cute aren't they? Tiny con is tiny.

Anyway.

I was dealing with tremendous pain, sleep deprivation, and muscle weakness. My norm, yes, but worse than usual. I struggled greatly to get through this experience. I couldn't wear jeans or a standard bra due to my pain level (the heart monitor electrodes burned my skin in a couple of places), so I was basically in my pajamas. Not a big deal at an event like this, although I did try not to look like I just crawled out of bed. I'm not sure the effort was successful. I was hell on wheels.

I helped with the Whovian table as usual. They're great, and I always appreciate that they put up with me. Metro and the Krewe were also there, and I made sure to say hi. We were in a separate, smaller area from them for whatever reason. The folks on either side of the Who table were lovely, but I hated hated hated the location. Hated it. Occasional visitors aside, being surrounded by blank walls and poor lighting was depressing in already difficult circumstances.

Staff didn't quite have their act together. Volunteers are awesome people, but it's helpful when delegates have a system that's utilized and works consistently.

Some exhibitors' passes were $0.00, while others were charged $25.00. Neither price, for the record, is the amount we were told to expect. While it's nice that some didn't have to pay, it was pretty aggravating that other exhibit volunteers were charged, especially a higher price than we were told.

"Parking is free when you're in the right place at the right time otherwise you'll be forced to pay $5.00 a day may the odds be ever in your favor but this is not our fault so we'll continue to advertise that parking is free" is not an acceptable way to conduct business. Either it's free or it's not. Collaborate, decide, and make it happen consistently for every attendee. This makes me crazy. Crazy, I tell you.

Four decades, folks. I already know I'm not the first person to bring these issues up over the years, yet nothing has changed.

They could stand to pay attention to other cons in the region, some of which run quite smoothly. Time Fest in NOLA is a fine-oiled machine. If there are problems, I know nothing of them. And that's how it should be. The folks behind it know how to delegate and communicate with their volunteers. Everybody knows their place and does their job properly, at least as far as I'm aware. And it's less than five years old.

That's all I have to say about that.

In spite of what looks like a scathing review above, I didn't feel or act angry, only mildly frustrated under the surface. I wasn't the only one. I encountered a lot of people who were tired and had a case of the blahs in general. I made a joke at one point about the possibility of carbon monoxide poisoning. Do we need oxygen? Are the lights frying our brains? What in the world is wrong with us? We had some laughs, and I'm always grateful to see friends, so I'll try to forget the weird moments and think about the good.

A few pictures, then. :-)

This young lady's TARDIS costume was exquisite.
I had to ask her for a photo.




My adorable peeps.

RAWR!

Much love for @toadsagecosplay.
One of the best cosplayers on the coast.



Sweet K-9. His handler is pretty sweet too.

My usual TARDIS selfie. Sorry, it must be done.

I'm in no way willing to come to terms with this, but I'm getting to the point where I'm too sick and weak to handle these events, or the public or even daily life in general. I always get so mad when people are rude enough to suggest that I should give up or that I should stay home because I'm disabled, but in this moment I feel like I'm being forced to tell myself to do just that. It's disheartening.

Sleep deprivation, CKD, and HKPP are a disastrous combination. The fact that I'm mobile at all is a miracle. I don't take it for granted. But I'm going to have to seek further help. I'll discuss sleep and cognition with my docs, and I'm planning to get estimates for a power chair setup. I don't know how I will obtain one, but I know I need one and I have for a long time. I've talked to MDA about it in the past. Their resources are limited and their chairs are reserved mostly for ALS patients, understandably. Anyway, we'll talk again in May.

I've rambled on enough. Time for bed. My birthday is in two weeks. Hard to believe I've made it this far.

Tuesday, March 1, 2016

Super Tuesday

This morning.

This evening.

If you are on my Facebook or Twitter, you already know how I feel about the Super Tuesday results. I didn't hold back.

But in spite of the fact that I didn't get what I wanted, I am glad I voted. Last time I voted, my regret was so deep that I swore I would never vote again. I hated myself. This campaign has been ugly and ridiculous...what a circus...but it's something Americans must take seriously. I'm non-partisan, but I still found it important and necessary to vote for the candidate that I share the most views with in spite of the fact that I don't agree with every single idea (within reason). As usual, voters were forced to choose between a Republican and Democrat ballot today, and I know I made the right decision this time. I felt instant redemption and relief.

I just wish the results had gone in my favor, obviously.

Thursday, February 25, 2016

Internal Medicine 2/23/16

Internal medicine was this past Tuesday. I had the usual blood work, including Vitamin D, Magnesium, and the basic metabolic panel. I'll go down there and look at results tomorrow. Dr. B doesn't deal with my kidneys and HKPP, but tries to manage anything else that comes along, including some of the symptoms associated with these conditions. This includes my ridiculous digestive system and my heart, which loves to race and palpitate over nothing. It gets especially fussy when I try to do anything productive, like laundry or dishes or walking to the mailbox. And if I'm startled in any way, forget it. I have to lie down.

Conclusion: My heart is a jerk. I'm back on a monitor for a little while, to take a look at things. Gone are the days of the Holter. This monitor hangs out on my torso and communicates wirelessly with an app on a cell device.




The electrodes are standard, and they still suck. My skin hates electrodes, so I'll be bringing out the Vaseline or Neosporin or whatever to deal with that. Not a real complaint. It could be worse.

We also discussed several of my medications. I'm no longer on esomeprazole (NEXIUM) due to its utter failure. Not only did it not work, it greatly aggravated my Gastroparesis and caused significant magnesium absorption issues (as PPIs are known to do), which brought my digestion to a halt as well as triggered new bouts of myotonia (think charlie horses that are prolonged and so severe that they require medical attention...yeah). So this just hasn't been going well.

Once I stopped the med, my acid reflux returned with a vengeance, worse than ever, and I began choking again. This has been in the news quite a bit lately, and to my dismay, I am one of the statistics of which they speak. So it's out, as are the two drugs I took prior to this one, omeprazole (PRILOSEC) and pantoprazole (PROTONIX). I'm now eating calcium carbonate tablets and propping up on four pillows until something else can be figured out.

In spite of stopping the PPI, my digestive system has still not recovered, although it is finally seeing a little bit of improvement now that I've increased my magnesium supplementation. I hope the increase will be temporary, since it's making my stomach and back ache like there's no tomorrow. It's always something.

As for other meds, I'm still fighting with my insurance about covering them. It amazes me how an insurance establishment thinks they have the right to say that I don't need a drug...like they would have a CLUE. Sometimes I want to say, "Ok, I'll stop taking these pills and go back to work, and YOU can have systemic disease. Deal?" Stop trying to kill me, you dummies.

That's the nice version of what I've really been saying. You're welcome.

I'm nowhere close to getting housing in Mississippi where my renal and muscular dystrophy physicians are, so I am really grateful to Dr. B here at my local clinic in Alabama for being so helpful. He has a medication assistance program that works with my insurance, and this has allowed me to obtain many of the medications that have saved and continue to sustain my life (as well as sort of wreck it, but that's the way the ball bounces when your body attacks itself). This is a no-win situation, and everybody involved knows that, but I'd say most of us are doing all we can do to keep me around. I don't take it for granted.

Next appointments: OBGYN in April, MDA and Renal Clinics in May.

Cross-posted to the HKPP blog as usual.

Monday, February 22, 2016

Systemic Disease, Social Media, and a Serenity Prayer

Sorry it's been a little while. I've been pretty distracted lately, in some ways good, other ways not so good. Winter is very hard on me where my condition is concerned, and already being weak from my bad episode in December hasn't helped matters. I'm in a great deal of pain, but I'm doing my best to carry on as usual. For me, that means dozing off and on in between general maintenance of myself and my home. Cooking, cleaning, the usual boringness, but it's more difficult than usual (and the usual is that it's difficult to begin with...my muscle weakness is significant, if you're new here). I did have a few outings with friends and family this month, some of which you've already read about, but I'll share more soon.

I'm hurting, but I count my blessings, because I know how much worse off I could be. I've been there, and I don't ever want to be there again. I'm making it through life, in time. Some days, the dishes don't get washed and I have to try again tomorrow. Some days, I stay in my pajamas because I simply don't have the energy to shower and change clothes. Don't worry, if you've hung out with me, I assure you I've showered. You're welcome. I've gotten no writing or art done this month, but I've done some research and made lists of things to write and paint and finish and do when I'm able. Whenever that will be.

Most of my work has been on my social media life. I cut down some of my social networks, even deleting a couple of them. I blocked loads of people. Some, I'm sure were fake accounts. Others had been abandoned and there was no reason to let them linger. A few were blocked for reasons, none of which I will get into here. I'm glad I did it, and that's all you need to know.


This meme is a pretty solid reflection of me these days. I'm very tired in general, mind you, but especially tired of BS. There are things I am forced to live with that I cannot change. Dealing with those things is hard enough, so the last thing I need is fabricated drama. I'm not supposed to be under any stress. I've had to choose to make my health and well-being priority #1, and my lifestyle - both the decisions I've made and elements that are beyond my control - are a reflection of that. I'm reminded of the "Serenity Prayer". I don't have a clue where it originated, but I've seen it all my life: 


I guess you can say I'm learning what I can change, and finding the courage to make those changes. It will be a work in progress till the day I die, I imagine. I've yet to accept the things I cannot change, and I am not confident that I ever will, but I do wish for the strength to handle those things appropriately, at the very least.

Speaking of God and prayer, I've been in quite a valley over the last few years. I haven't been able to find the right words to say, and I'm not sure I have the right words now, but my next blog will be about my spiritual journey - where it has been and where it's headed. I've changed a great deal since I started this blog, and that is something I would like to finally address. Talk to you then.

Saturday, February 13, 2016

Ocean Springs and Family Matters

My biological father has been gone for 11 years now. He died on February 11th, unexpectedly, and his death at such a young age (54) changed the family forever. My young half-siblings were still kids when he died, and each one of their lives took completely different directions as a result. They are all doing quite well now, thankfully, and I know he would be very proud. I can only imagine what he would say about Jo, Zoey, and Sadie, and speaking of them, I have news! Now that my youngest brother has made the announcement online, I can share that he is going to become a father in July. This took the family by surprise, but we love babies and I look forward to meeting my new niece or nephew later this year!

Freddy, my stepfather, accidentally called me Lynn today during lunch. He talked about how much he misses her. We discussed his upcoming retirement and his final wishes (which I hope won't be utilized for years to come), and talked about the house. My older brother has Dad's house. I told him I think I should have control over what happens to Mom's. It was hers before they met and it was Grandmother's before that. I lived there nearly 16 years. So if he doesn't sell the house himself, hopefully he will agree to list me as the executor when that horrible day comes (it better not be for a long, long time...please).

Anyway, we spent the morning in Ocean Springs, Mississippi at the farmer's market. It was a beautiful day, and the crowd was larger than expected, but it was nice. I'm not kidding when I say I wanted to buy everything there. Excellent faire, probably the best selection I've ever seen at a tiny local outdoor market like that, and no retail pyramid crap. I hate when people are trying to sell Pampered Chef and Rainbow and such at a farmer's market. Go have your parties and stop taking up limited space where farmers and laborers are fighting to make a living. Gosh I'm getting cranky in my old age, aren't I? Sorry if I offended someone. You'll live. ;)

The loot:

Huge garlic flatbread from Serious Bread Bakery, Gautier Gold Honey (in a bear!), Grumpy Man pepper jelly and salsa, and Sugar Fix pralines! Oh, and I forgot the pic, but I bought a parsley plant. Wish me luck in keeping it alive.

Freddy and I went to Mosaic Tapas Bar for lunch. Funny enough, what we ordered was nothing close to tapas. He had a half-pound burger that looked like what every perfect photo of a burger should look like. I ordered a Cuban sandwich, which ended up being twice the size I imagined. We were stuffed, took home a ton of leftovers, and I thanked them by dumping my sweet tea across the entire table, ha! OK, it was an accident. I do that more often than I'd like to admit.

I'm home and ready to crash into bed from exhaustion, but I'm very thankful that I had a good day. I'm glad Freddy did too. Things have been really tough for him, and he deserves to live the rest of his life in absolutely serenity after all he's been through over the years. We may not be blood-related, but he raised me from age 11 and calls me his daughter. I consider myself very lucky that he's my dad.


Side Note: I'm not compensated for a dang thing I mention on this blog. Freddy and I bought it all fair and square, and you should too. Support your local biz! :-)