Tuesday, November 25, 2014

One Thing

If I could only have one purpose on this Earth, one life goal, one daily motto, one publication, one website banner, one profile picture, or one piece of advice to anyone, everywhere, it is this.

What I do with the dash between my date of birth and date of death will never be enough, but the question I know I will ask in my last breath is "did I make a difference". I hope and pray the answer will be a humble affirmative. I'd even settle for a "probably" if it would mean my existence isn't in vain.

I may not have much or be much, but may God help me, in spite of myself, to give it my all.

Sunday, November 23, 2014

Local Sleep Consultation

I finally finally (did I mention FINALLY) met with a pulmonary sleep physician a few days ago. He was great. We discussed my history and my condition (he knew it had to do with potassium, but didn't realize the primary form involved a myopathy or that the MDA was involved). He said he'll read up on it, and I offered to give him more information when I see him again.

A bit of back history on me: I had two sleep studies at age 20. I was found to have restless legs and borderline sleep apnea. It wasn't enough to officially diagnose me with sleep apnea, but they said I was holding my breath for no reason and asked me why. It annoyed me because it's not like I do it on purpose or something...hello. At any rate, they were sleep psychiatrists and wanted to talk psychiatry and give me klonopin, both of which I declined. The hospital eventually shut down, and my records were lost (probably in Hurricane Katrina, if nothing else).

I would have been willing to see a sleep psychiatrist again, but I'm happy that he ended up being a sleep pulmonologist instead. With my breathing issues and muscle disease, that is the right place to be in my opinion.

The doctor was very confident that my condition has worsened since age 20, and diagnosed me with obstructive sleep apnea. He wants to confirm it via sleep studies, of course, which is what I was expecting. Their schedule is incredibly backed up, so I'll return for study one on January 30th. The second will take place a week later.

He said he has no doubt I am not breathing well at night, considering that I choke and occasionally snore. He also diagnosed me with sleep deprivation (glad that's finally documented) and said he hopes he'll be able to help me with that via oxygen. The studies will tell him what kind I need. I already have a CPAP machine at home in the closet that was donated to me, I just couldn't get it calibrated without the studies, so here I am. He is hoping that the CPAP will be the right thing for me so I don't run into any trouble with getting other equipment (financially speaking).

Overall, it was a solid consultation. He was very nice, eager to answer any questions, and seemed positive and helpful. We'll see what happens come January. I'll keep you posted.

Monday, November 17, 2014

I'm a busy bee!

...or is that a butterfly?

A friend and I had a craft booth at a local church fundraiser. It was a blast. She painted faces, and I sold a few goodies:

My sketch journals were a conversation starter. Loved meeting a few Whovians on the Mississippi Coast! I also made my chocolates, as I often do during the holidays. They turned out pretty darn wonderful.


I was on my walker and could have never done any of this without assistance from friends. We didn't make a ton of money, but we sure laughed a lot, as we usually do. I went straight home afterwards and crashed. I've pretty much been down with muscle weakness ever since. I'll hopefully see some improvement in spite of the extreme weather fluctuations we're getting at the moment:

It was 73 at 2:00 this morning. It will be 27 tonight.
Small fluctuations are noticeable. Large ones are detrimental.
May God have mercy on all of us with systemic disease.

Last week, a friend and former Bob Ross student invited me to The Melting Pot for dinner. Folks, it was one of the most incredible dinners I have ever experienced:

Everything was amazing. I loved every minute.

The weekend prior, I carpooled with my family to Louisiana. You'll never guess why. In fact, I cannot believe I haven't blogged about this yet. I've been living in a fog since Mom died and I've forgotten to share so much here. At any rate, here is the good news:

My little Zoey Boo Boo is going to be a BIG SISTER!

We are so excited to have another princess in the family! And what a special honor that they're naming her after me. It makes me cry if I think about it too much. I can't wait to meet her!!!

The baby shower was nice, and I was glad to see my nieces.

I'm thankful that I could go to Louisiana to spend time with everyone, and I hope and pray I am able to return when the new baby arrives in less than two months! Squeeeeee!

I haven't forgotten about National Novel Writing Month. In fact, I have been a writing fool and I'm on track to reach 50K at the end of the month. I've met with nearly 20 other writers around the gulf coast over the last 2.5 weeks, which has been great. I hope we can keep in touch after NaNoWriMo ends.

I've answered over 500 questions on Ask.fm. It's been a fun distraction. Thanks (and feel free to keep throwing questions at me)!

I ranted and raved over the Doctor Who finale. Wow, what a ride Season 8 was! I'm planning a long recap on the blog, so heads up on that. I hope to post it in December before the Christmas special airs.

As I said earlier, my body is pretty fed up with me being so active, so I'm down for the count at the moment. I had to bring out the emergency potassium and magnesium in an attempt to get my condition under some sort of control. It's been a rocky couple of days, but I'm doing my best.

Thanks for hanging in there with me, readers. I hope everybody is doing great.

Sunday, November 2, 2014

June Hospital Stay

I realize how far behind I am on things. This has been a tough year, and blogging took a bit of a back burner. Thanks for bearing with me on this. I want to talk about my experience in the hospital back in June. It was different from the usual hospital stay. I often leave a hospital feeling the same or worse than when I went in, and regret it. Surprisingly, I left feeling so much better than when I went in this time, in spite of several medication errors. The reason for that boils down to compassion and understanding. Here's the rundown:

I went to the emergency room in meltdown mode. I was in tears from the pain in my head and lack of sleep. I've had a headache, sometimes to the point of migraine, for over a year and I couldn't take it anymore. I was also afraid, very stressed out, and upset, as I felt my independence was being threatened. I told them if things were going to stay this way, I wanted off this planet. The nurse knew I didn't really mean it, and said they would try to figure out how to get my pain under control. I asked for a medical doctor, but also asked to speak to a psychiatrist and a social worker. I wanted a medical doctor, social worker, and a psychiatrist to collaborate and come up with a plan to deal with my pain, stress, and help me to achieve as much independence as possible. I told them I didn't care how this had to happen - I was willing to be admitted to any floor to be taken seriously. They were reluctant, but ultimately did exactly what I asked. I was admitted to the geriatric wing of the psychiatric floor, as that is where the three doctors I requested reside. I was more than fine with that.

I went through the usual motions that every patient on the floor goes through: they checked my body for injuries to ensure that I wasn't abusing myself or being abused. They asked me a lot of questions. I gave them my medical history and told them everything I could possibly think of concerning my emotional state. I brought up how differently I am acting since my condition declined and my medications were heavily increased. I ranted about acetazolamide, mostly, but we all agreed that I can't stop taking it because of how well it's working to prevent paralytic attacks (which I still have, certainly, but I'm not staying in a near-constant state of paralysis like I once was). I even mentioned my long marathons of lamenting on Twitter when I'm upset or stressed. I told every doctor who entered the room how unhappy I was with the fact that I've started cursing. I didn't curse growing up, even as a teen, or even when I was married to a sociopath. But now, the words come out of my mouth before I can even think about it, and it disturbs me. The head psychiatrist actually chuckled a bit, and then he said "You are acting completely normal. You're living with a no-win situation, and any normal person would be reacting like this." In total, I met with a medical doctor, three psychiatrists, one group therapist, and one social worker. The diagnosis was the same across the board: Muscular Dystrophy, and anxiety and depression that is based on my current circumstances. My problem is, I quote, "medical, not mental". I'm being too hard on myself, and perhaps others have been too hard on me as well, my social worker suggested. I'm paraphrasing, because she was surprisingly blunt about it, if not harsh. I was told that I was "very intelligent with no psychosis", and that my story is somehow "intriguing and inspiring". Okay, if you say so. Thank you very much.

Because I showed up on a Friday, I spent a lot longer in there than I would have. The weekend is kind of a dead zone, so I chilled with three doctor consults and nothing else. Monday was the busy day...group therapy and the official consult by the head psychiatrists. The docs wanted me out of there asap, because there was "no reason to be inpatient" and they decided all the medication errors made me "safer at home". I couldn't have agreed more. I was set up with an outpatient follow-up, recommended grief counseling, and assigned an outpatient social worker to address basic personal needs at home and a transition to more independent living. That's it. They had no solution to my pain or my ailments, and I didn't expect them to. But I was relieved that they cared.

For the most part, I was bored out of my mind. No phone, no TV, no music, just the sounds of nurses and geriatric patients shuffling down the hallway, sometimes yelling at each other, sometimes knock-down-drag-out fighting. It was an eye-opening experience. I looked at those patients, down and out and at the mercy of others, wondering what their lives used to be like verses where they are now, and my heart went out to them. Being surrounded by the 50+ crowd, I stuck out like a sore thumb and was often asked what in the world I was doing there. The staff said repeatedly that I belonged on a medical floor, but they said they were happy I chose to come there if I needed a place to feel safe and get some rest. I really appreciated hearing that, especially from a psychiatrist. My room door remained open the entire time. I was allowed to come and go as I wanted (as long as I didn't leave the floor), and I was allowed to use the phone (which I only did once). I eventually asked for a pencil and paper, and it was given to me. I worked on my novel in between meals and naps. I attended one group therapy session, which I quite enjoyed and everybody knew it. At one point, I found myself advocating for a young lady who was nearly catatonic and was trying to ask for a blanket because she was shivering, but the staff yelled at her to stay in the room. I put on my former hospital administration hat and flat out told them as nicely and professionally as I could to get up and go get her a blanket. They said they would. Apparently, I was considered lively and animated during group therapy (who, little 'ol me? No way! Just kidding. I'm practically a cartoon character, folks). The therapist said she loved talking to me, and she tried to get me transferred to her wing (she was in charge of the addicted, suicidal, anxious, violent patients of various ages...they were all lovely, by the way). However, I was discharged before that happened.

The medication errors...good Lord. I have no doubt my case took up an entire MERT meeting that month (that's Medication Error Report Team, for you non-hospital-admin folks). I used to do those meetings. I was a medical administrator at one time, so I am all too familiar. The staff would not get their crap together and continue my home medications. When they finally did, they got them wrong. It was a constant source of debate, and one nurse finally came to my defense. I am so grateful to her...she was wonderful and I wish she had been my nurse every day. She couldn't have done a better job. Her off day was Tuesday, the day I was discharged, and my nurse that day (who was new) got my meds wrong again. I ended up paralyzed as a result. They took it seriously, handled it with as much grace as they could, and I was able to leave about 8 hours later the same day.

I was a happy camper when I left (as you may have already read if you've been following my blog). I was exhausted, but feeling so much better emotionally. It did me a world of good to be told that I was "completely normal" and that it was okay to be acting and reacting the way I was in regard to what was happening to me. I am thankful that I found the courage to "call for backup", so to speak, and I definitely don't regret it. A social worker checks on me 2 to 3 times a month, and I am eventually going to start grief counseling if the counseling center that was recommended to me will ever add me to their schedule. I'll keep you posted, I guess.

I'm glad I finally shared this. I hope it helps someone to not be afraid of asking for help when you feel overwhelmed, whether medically or otherwise. Those of us who have been through the nightmare of medical abuse have valid concerns about seeking care, especially emergency care, but remember that not every experience will be the same. My best advice is to keep your cool, but stand your ground. Arrived prepared with solid information about your medical condition, medical history, and home medications. If someone mistreats you, speak out. If you are treated well, don't take it for granted. You and I have a right to live the best, most independent life possible for as long as possible. Be kind to others and give them the benefit of the doubt, but don't forget to do the same for yourself.

Saturday, November 1, 2014

HKPP Medications Update

Just letting medical-related readers know that I've updated my HKPP blog with a new list of medications and supplements, as well as a humorous post with TMI, a rant about emergency care, and other ramblings. If you have HKPP or are following my medical posts, feel free to subscribe over there. (You're welcome to stay here, too. I didn't mean it like that.)

I appreciate all of my readers, both new and long-suffering. I've had over 100,000 hits now, and some of you have been with me for 5 + years. Sometimes I wonder if you genuinely care about me or if you simply enjoy being a fly on the wall of someone else's train wreck life (ha), but either way it's pretty amazing that you're still here.

Thanks for riding the roller coaster with me.

National Novel Writing Month 2014 Is Upon Us







Okay, I'll stop with the shouting. :)
50,000 words. Let's do this.