Sunday, November 23, 2014

Sleep Consult

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 questioned 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.

Sunday, November 2, 2014

June's 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 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 (side note: I'm writing a 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 shit together (sorry for the language, the emphasis is needed) 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 (if interested, you can see how hard I hit the ground running upon my discharge on my other 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

Updated Medication and Supplement List 11/01/14

Hello my friends,

I figure this would be a good time to update my medication and supplement list. I've decided to include all supplements including all PRN medications and the topical gel I use for muscle spasms (it works...I recommend). Each one is hyperlinked to more information. I'll fix it in the sidebar as well.

irbesartan (AVAPRO) - 150mg 1 x daily
eplerenone (INSPRA) - 50mg x 4 daily
amiloride (MIDAMOR) - 5mg 1 x daily
acetaolamide (DIAMOX) - 125mg 1x daily
spironolactone (ALDACTONE) - 25mg 1 x daily
effervescent potassium (EFFER-K) - 25mEq PRN up to 3 a day
Magnesium Citrate Tablets - 200mg x 2 daily
Magnesium Citrate Powder - 1 to 2 teaspoons in water PRN
Magnesium Chloride Gel - Topical PRN for muscle spasms
pantoprazole (PROTONIX) - 40mg x 2 a day
Omega Oil - 1300mg 1 x daily
ubiquinol (COQ10) - 100mg 1 x daily
Vitamin D - 2,000 IU 1 x daily
Sublingual B Complex - 1 dropper daily
Zinc - 50mg 1 x daily when I remember...let's face the facts here.
Liquid L-Carnitine - Couldn't find the one I bought locally online, but I've linked a similar one. It's refrigerated and I don't always remember to take it, but I'm trying.
Hylands Homeopathic Phosphorus - 2 tablets 1 x week
ibuprofen (ADVIL) - 400mg PRN

For the sake of easing any curiosity, I am going to categorize the meds and supplements that I feel are making a difference, verses the meds and supplements that I don't feel I'm responding to below.

Meds that I know without a doubt are helping:

irbesartan (AVAPRO)
eplerenone (INSPRA)
amiloride (MIDAMOR)
acetaolamide (DIAMOX)
potassium chloride (KLOR-CON)
effervescent potassium (EFFER-K)
Magnesium Citrate Tablets
Magnesium Citrate Powder
Magnesium Chloride Gel
pantoprazole (PROTONIX)
tolterodine tartrate (DETROL LA)
Vitamin D
Hylands Homeopathic Phosphorus
ibuprofen (ADVIL)

Meds and supplements that I feel no effects of. Please understand that doesn't mean they're not working or doing their job, I'm just saying I don't feel any noticeable positive difference on it:

spironolactone (ALDACTONE)
Omega Oil
ubiquinol (COQ10)
Sublingual B Complex
Liquid L-Carnitine

I will talk about medications that I've tried previously, and their effects, in a different entry. There are many drugs that I have been prescribed for various reasons that caused side effects - some of them serious. Stay tuned to the blog if you wish. I plan to come up with the long list sometime this month.

I'm so tired of pills. Words cannot express. Gotta do what I gotta do, right? Quality of life is the goal...always has been and always will be. Keeping my eye on the prize.

Feel free to let me know if you have any questions.


I'm slowly getting my blogs back on track. I still have a lot to catch up on here, so bear with me.

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Have a safe and happy day. Beware of all of that tempting Halloween candy. :)