I read a private blog today that simultaneously made me feel better and broke my heart. Chronic illness, either physical or mental, is great at that. To know you're not alone in the struggle can give you the strength to face it and keep going, but it's also sad to know someone else, especially someone you love, is living in the same realm of suffering as you.
Life is weird and unpredictable and sometimes very hard, and we can only live it one day at a time. We could all stand to remember that it's all any of us can do, and therefore we must make a conscious effort to act (and react) accordingly.
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:
potatoes (not including sweet potatoes or yams)
eggplant (also called aubergine)
peppers (all varieties except white and black peppercorns)
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. firstname.lastname@example.org
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.
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.
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.
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.
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. :-/