Anyone who knows me, knows I'm currently struggling. Anyone who knows me knows that if I'm actually complaining about exhaustion and pain knows it must be greater than the daily trials. I try, honestly, not to complain about it... at least not on a daily basis. Why? Because I am alive. I CAN walk. I can talk (much to the dismay of others, I'm sure). I can hug and kiss and create memories with my family. There are others out there TRULY suffering, TRULY struggling with things much, much greater than the ailments I have and I'm very aware of this, and remind myself constantly. But these struggles and trials are MINE. I remember one time, when I was hurting pretty badly, there was an older... well, at the time I thought he was a good friend who, in the months prior, had been like an older uncle, giving advice, listening, all that jazz. He later died (given the extreme betrayals that followed his remark to me, I think it was probably karma) who mocked me one day when I was in a great, great pain by saying, "At least I don't have to hobble just to walk."
I turned around and backhanded him with the hairbrush I held.
It's been 5 years since that was said to me, and I remember it so clearly.
You'll have to pardon me a moment -- when I'm in a Fibro Fog, my thoughts are more jumbled than normal, and they're pretty jumbled to begin with -- I'm well aware of that, too.
Anyone who knows me knows I was born under the sign of Libra, and I pretty much define that sign. (Anyone who knows me knows I also believe in God, and that I don't think one has to be exclusive of the other.) Libra is about balance, justice. There are so many people who will read this that I know from various locations online whom I have never once met in person -- from mIRC back in 1997 when hardly anyone used the internet, to Woman's Day forums, to forums after that, to the site where Rick eventually found me. And without fail, at some point, I had to stop what I perceived to be an injustice toward someone else. In some circles, I'm known for my bat -- I'll come out swinging to defend someone I feel is unfairly being treated. If you know me at all, you know I'm still this way. I'm softer now than I was back in those days. And as a Libran, I try my best to start with gentle reminders that we all have a journey or trial or battle we are all fighting, even if the others cannot see it. I do this in my every day life (most recently with the issues in getting Carly's driver's license.) But if my gentle remarks/explanations don't work, if my attempt at presenting a side they may not have seen does not work, well... I still have the bat. As I grow older, I find the gentle, kind way works 99% of the time. That other 1%, well, they are not worthy of me, my time, nor the time or energy of the person they've decided to target. I have taught my children and my Scouts that TIME is the most valuable commodity we have -- once it's gone, once it's wasted, there is no getting that time back. The second most valuable commodity is emotion. If someone is neither worthy of your time nor your emotion, walk away.
In reality, those types of people who fling out at others are in a battle against themselves. There is something vile or upsetting they see in another and they point it out to the world in the desperate hopes that population will look in the direction they're pointing instead at of the person flinging their pain and projecting it upon another person.
Ironically, I can name a handful of people who, as they read this, will think it's about them. I assure you, if this were about a single individual, I'd address it to that individual privately, which, if you know me, that's what I do. But ya know, I guess it is about a single person:
Me.
Anyone who knows me knows my religious beliefs are vastly different than most. As Rick and my children can attest, I can get on private rants about how in the world people can do and say certain things "in God's name" that God never once utter nor implied. But in the end, that's on them, not me, and I'd rather see those people believing in SOMETHING greater than themselves, to believe in anything. To simply BELIEVE. Anyone who knows me knows I don't go to services like others think I should. I don't think people think of me and think "Christian", which, surprisingly to some -- and horrific to others -- I'm okay with. Sweeping generalizations of who "Christians" are makes me very okay not to be lumped in. But, I hope those who know me do think of me as a spiritual person. I find certain people online that I'm drawn to on a daily basis radiate God, glow with something bigger, but they're not the "ram it down your throat" "Christians". I'm sure most of this paragraph will insult a lot of people, but if you know me, I think you know what I'm attempting to say and know I say it with a kind heart. When I read their blogs, I'm eased. I'm uplifted. I'm inspired, not just to create, not just to connect, but inspired to be a better person. And I write them, and I let them know there is a person out in the huge huge universe who is genuinely touched by their gentle kindness to the world as a whole. Because I think they deserve to know they touched someone, even if that someone was a single someone: me.
We ARE small. But in our smallness there is such vast capabilities and vaults of goodness in that this one tiny person can influence so many.
As I said last night on my status on FB: Genuine kindness can never be misinterpreted.
I used to be a very angry person when I was much younger. I had no reason. I had no excuse. I still don't know why. It's just who I was. Now I don't have time for it. I don't have time for emotional vampires to suck out my limited energy. Time is slipping through my aching fingers faster than I can complain about it. With our time so limited, why in the WORLD would we not attempt to be kind people to others. I guess what I don't understand is what all the hatred is about.
Why must someone point out the struggle of someone else?
Why must someone's first response be lashing anger?
Why must something someone doesn't understand automatically be something dishonest or ugly or ... just bad?
I don't know.
Anyone who knows me knows one of my top 3 Movies of All Time is EVER AFTER, and she sums it up so accurately:
Danielle says to Prince Henry: You have everything, and still the world holds no joy and yet you insist on making fun of those who would see it for its possibilities.
It takes NOTHING from someone to be kind. It takes NOTHING from someone to praise and acknowledge the efforts of another. It takes NOTHING to smile. It takes NOTHING to be a kinder, gentler person. It doesn't take religion. It doesn't take money. It doesn't take anything but a single individual to hope to make a moment with someone else be a better moment just because they're sharing it with you, whether it's online, face to face, over the phone. You have no idea whose day you may improve. You have no idea what memory for someone else you are making RIGHT IN THAT MOMENT.
Yesterday in the mail, I got a card for me to start feeling better. She and I went to church together when we were kids. But in that card, she told me that she remembers me cheering her up when she was sad. My first thought was: ME? I was an angry kid -- who did I cheer up? But my second thought was that I had no memory of that moment -- but 30 years later, SHE does. Without knowing it, my angsty teen self had created a good memory that someone -- DECADES LATER -- remembers about me and how it affected her.
Today, if you look back on this morning, or yesterday, or last week, or last month, are you sure you made a memory someone may remember for decades? And, if you did, is it a good one? Is it one you're proud of? These are the things I wonder about. What memories are my kids having of me looking back on their lives (poor Shandie -- she had it the roughest). What are the Scouts going to remember about me in twenty years? What will my family remember? My husband? If I'm gone, what mark have I left on others?
What mark have YOU left on someone else? And is that mark -- that permanent mark -- one that you're proud of having left behind?
I hope so. With Kindness, there is always Hope.
Tuesday, May 8, 2012
Saturday, May 5, 2012
It's in the Blood
When I lived up in the Metroplex area of DFW (where my parents are) I loved loved LOVED yard sales. You didn't even have to have a listing of them -- you just drive around and find all the signs. Friday sales were the best, according to my granny, and she was right. And although I love going to yard sales with my mom, the QUEEN of yard sales was my tenacious Aunt Sandy. Ohhhhhhhhhhhhhhh my gosh, there is an experience to behold right there. Mom and I can drive by one and kinda glance and decide if it's worth our time to browse or not, but not my Aunt Sandy. EVERY bag had to be searched, every box had to be explored, there were PEOPLE.TO.MEET. She could find the dinkiest little yard sale and walk away with two bulging bags of ... stuff. She truly had it down to an art form that most of us just don't have the time or patience for, but she did!
And don't think she dug around for herself, or her husband's shop on eBay, or her own kids, or her own GRANDkids. Oh no. NO NO NO. Mom would call and say, "Sandra has bags for you and the kids to go through when you're up here." And we'd go over there and it was like walking into a mini-department store and we'd sit and dig into the bags and boxes, and Sandy would tell us about other things they had there, or she'd look through a bag and half way through it say, "Oh no, this is Jenny's bag" (her daughter in Oklahoma). She spent HOURS and HOURS hauling through town, in and out of the car, and digging and digging in the heat and then there we were, sitting in the air conditioning of her spare bedroom taking a single hour to search through the things it had taken her weeks to accumulate.
I miss her. She died in October. She was only 66. I never thought the last time I went digging through a collection of garage sale finds from my aunt would be the last time.
Yesterday on my little street I saw them putting a yard sign up in their tree -- just that one sign -- nothing on the streets. I saw it said 7:30am-11am and I told Rick, "I gotta go down there!" Mostly, I love their house and they have such GREAT rosebushes that I wanted to see a little closer without stalking them and freaking out the poor people from the weird chick who now lives in the Old Anderson House (that's our house, just so you know.) Well, thanks to my meds, I overslept, and I bolted out of bed at 9:30 and rushed down there. What a score!!!
I came upon a bit of black and white fabric, snagged it up. Then I'm told, "Ohhhh, you should have been here earlier, I had a TON of fabric."
I think I scared them a little when I started crying at my loss. But I grabbed up that fabric. They didn't have a ton of stuff left, but what they had, I loved. And they were SO funny. The lady who lives there is named Kay. I met her and her daughter (although I don't remember the daughter's name and I only remembered Kay because of my Aunt Kay -- I'm horrible with names.) Here are some photos of my scores:
I saw this little metal vase originally and snagged it up -- it matches some items I have on my dressing table. But then when I got it home, I thought: SHE HAD BLUISH FLOWERS and bolted back out the door and sped into their drive-way. The husband pointed in a "Oh boy, it's back" kinda way and I may have shierked a little when I saw they were still there, and that's probably why the lady at the table took a step back. Smart woman. They're on my dresser next to my gargoyle Simon. He seems unimpressed but *I* love them and they match perfectly. So I grabbed them, but then Kay was like: You need these too! And I agreed and clutched them up and decided these would look great in the living room:
I had also found some doilies to put on pillows or dresses or whatever, plus two really kitchy looking pillows for Sydney's future bedroom when she and Cooper split up (Cooper moves to Carly's room when she leaves for Texas State). I grabbed this HUGE basket for 50 cents, perfect for the den to hold yarn on my current crochet projects. I'm trying to decide what color to paint it -- suggestions?
And SCORE! Carly loves make-up. She buys things like Urban Decay and expensive things I'd never buy (she makes her own money, so that's fine with me!) So originally I saw this old make-up travel case and KNEW she would love it. It was a dollar!!! YES! And, since I got it, they threw in the large suitcase for just another dollar. American Tourist vintage luggage for TWO DOLLARS! We plan on painting it. And the travel case has an adjustable mirror that's really, really neat.
I don't normally buy art, or arty things, but this just kinda spoke to me. It matches our bedroom in the colors and softness I have in there. The gold frame is hideous, so I need to find another frame or paint this one. I don't have it hanging yet but know exactly where it's going.
I scored a few other treasures, but these were my favorites so I thought I'd share them. Plus, in Aunt Sandy style, I met some really neat people this morning whose house I've always admired. They were fun and welcoming and even said: When we have our sale in the fall, we'll walk down and hand you a special early invitation. That made my day! Great finds, meeting awesome new people just a couple of blocks down. Twenty years ago, I don't think I would have appreciated the experience I had this morning. If this is what growing older is like, then I'm definitely okay with it.
It's very strange. I wanted to post about what I found on the blog, but I didn't have a title, I didn't know where I wanted to start, but Gran and Aunt Sandy turned it into a little story. I love my family. And since I mentioned them so much, here they are: One of my FAVORITE, HILARIOUS moments with my Aunt Sandy a couple of years ago at Christmas:
And my Granny Souder. She died in 1995 and I talked to her every single day. I was with her when this portrait was taken. I was around 10 and it was sooo funny. She complained about some of the positions the photographer put her in. This photo hangs in my hallway that connects the den (we all use the den to get in and out of the house) to the kitchen. It hangs proudly where it can be seen always. It's her patterns I use in crocheting.
I miss her and Sandra sooo much, but I know they're having a blast in Heaven together -- and in their Heaven, I'm pretty sure garage sales are part of it. Their love of garage sales is definitely part of me -- what can I say? It's in our blood.
And don't think she dug around for herself, or her husband's shop on eBay, or her own kids, or her own GRANDkids. Oh no. NO NO NO. Mom would call and say, "Sandra has bags for you and the kids to go through when you're up here." And we'd go over there and it was like walking into a mini-department store and we'd sit and dig into the bags and boxes, and Sandy would tell us about other things they had there, or she'd look through a bag and half way through it say, "Oh no, this is Jenny's bag" (her daughter in Oklahoma). She spent HOURS and HOURS hauling through town, in and out of the car, and digging and digging in the heat and then there we were, sitting in the air conditioning of her spare bedroom taking a single hour to search through the things it had taken her weeks to accumulate.
I miss her. She died in October. She was only 66. I never thought the last time I went digging through a collection of garage sale finds from my aunt would be the last time.
Yesterday on my little street I saw them putting a yard sign up in their tree -- just that one sign -- nothing on the streets. I saw it said 7:30am-11am and I told Rick, "I gotta go down there!" Mostly, I love their house and they have such GREAT rosebushes that I wanted to see a little closer without stalking them and freaking out the poor people from the weird chick who now lives in the Old Anderson House (that's our house, just so you know.) Well, thanks to my meds, I overslept, and I bolted out of bed at 9:30 and rushed down there. What a score!!!
I came upon a bit of black and white fabric, snagged it up. Then I'm told, "Ohhhh, you should have been here earlier, I had a TON of fabric."
I think I scared them a little when I started crying at my loss. But I grabbed up that fabric. They didn't have a ton of stuff left, but what they had, I loved. And they were SO funny. The lady who lives there is named Kay. I met her and her daughter (although I don't remember the daughter's name and I only remembered Kay because of my Aunt Kay -- I'm horrible with names.) Here are some photos of my scores:
I had also found some doilies to put on pillows or dresses or whatever, plus two really kitchy looking pillows for Sydney's future bedroom when she and Cooper split up (Cooper moves to Carly's room when she leaves for Texas State). I grabbed this HUGE basket for 50 cents, perfect for the den to hold yarn on my current crochet projects. I'm trying to decide what color to paint it -- suggestions?
And SCORE! Carly loves make-up. She buys things like Urban Decay and expensive things I'd never buy (she makes her own money, so that's fine with me!) So originally I saw this old make-up travel case and KNEW she would love it. It was a dollar!!! YES! And, since I got it, they threw in the large suitcase for just another dollar. American Tourist vintage luggage for TWO DOLLARS! We plan on painting it. And the travel case has an adjustable mirror that's really, really neat.
I don't normally buy art, or arty things, but this just kinda spoke to me. It matches our bedroom in the colors and softness I have in there. The gold frame is hideous, so I need to find another frame or paint this one. I don't have it hanging yet but know exactly where it's going.
I scored a few other treasures, but these were my favorites so I thought I'd share them. Plus, in Aunt Sandy style, I met some really neat people this morning whose house I've always admired. They were fun and welcoming and even said: When we have our sale in the fall, we'll walk down and hand you a special early invitation. That made my day! Great finds, meeting awesome new people just a couple of blocks down. Twenty years ago, I don't think I would have appreciated the experience I had this morning. If this is what growing older is like, then I'm definitely okay with it.
It's very strange. I wanted to post about what I found on the blog, but I didn't have a title, I didn't know where I wanted to start, but Gran and Aunt Sandy turned it into a little story. I love my family. And since I mentioned them so much, here they are: One of my FAVORITE, HILARIOUS moments with my Aunt Sandy a couple of years ago at Christmas:
And my Granny Souder. She died in 1995 and I talked to her every single day. I was with her when this portrait was taken. I was around 10 and it was sooo funny. She complained about some of the positions the photographer put her in. This photo hangs in my hallway that connects the den (we all use the den to get in and out of the house) to the kitchen. It hangs proudly where it can be seen always. It's her patterns I use in crocheting.
I miss her and Sandra sooo much, but I know they're having a blast in Heaven together -- and in their Heaven, I'm pretty sure garage sales are part of it. Their love of garage sales is definitely part of me -- what can I say? It's in our blood.
Thursday, May 3, 2012
Trying to Figure it Out
I apologize in advance for the length of this blog post. There are several things I've made of note lately on what all I want to blog about, but then things hit me and I forget.
I have Fibromyalsia and recently we added Lupus to it. Fibro comes with this thing called Fibro Fog, and when I'm in a bad cycle, my memory just goes, thoughts linger on the edges but fade into the distance. I'll tell Rick something a gazillion times but then find out later I hadn't mentioned something to Margaret or my Mom and feel so badly. From Rick I hear, "I've heard this 10 times already" and from Margaret or Mom I hear, "Why didn't you tell me?" So now I have to stop and ask, "Have I told you this already?" Most people know it comes with who I am now, but for others, it can be irritating. I pray I never get Alzheimer's because if Fibro Fog is this irritating to my loved ones now, I can't even imagine how they may or may not tolerate me with that horrific disease.
So, things have been crazy. My SD card is shoved full of things I need to upload and post about. Crafts I've done, Girl Scout events from camping to kayaking, Carly's prom which was in MARCH, and her last high school performance which was last night. It freaks me out a little that today is already Thursday of yet another week, and freaks me out even more when I remember we're in MAY now. Before I know it, Mom and I will be contemplating whether or not last year was really our last year to do Black Friday. I can't keep up. Time is slipping too quickly through my fingers and it worries me.
And April is so rough for me on most years: Lots of time Easter is there plus Carly and Sydney's birthdays, which are only a day apart. But this year, I had a major Girl Scout event each weekend for Scouts. I can't seem to get Time to just sloooooooooooooooooooow just for a little bit. And now that April is over, and I survived it all (YAY!), the Fibro/Lupus I fought extra hard last month, well, it won.
Every day I run fever. It's just part of it. As are the constant body aches, the knotted muscles, the headaches, the horrible sleep (it's hard to sleep in chronic pain). But last week, it seemed to worsen. I thought it was maybe a little too much sun during kayaking. I thought maybe the extra aches were kayaking against the wind. But as of Wednesday (yesterday), it wasn't better, so I voluntarily did something I hardly EVER do: I broke down and went to the doctor.
Disclaimers:
I've smoked a long time.
Even when I weighed 218, I didn't have high blood pressure.
For those who know, I've battled an issue with my foot for a year now. So... I've been to a LOT of doctors over the course of the last year. Monday at the store, three different strangers asked me if I was okay -- guess I looked ready to fall over. Yesterday, however, when they took my blood pressure, it was 175/90. It's normally 128/67 since losing the weight. When I was 218, it was still in the 130/75 range. This new number yesterday... well... that was scary.
It was scarier when they wouldn't let me leave until it came down because I was "in stroke range". Before the doctor came in, I'd texted Rick with the blood pressure reading. I hadn't replied after that because the doctor had come in and my phone was off. When I got out of the office, Rick called: He was on his way home. Apparently my numbers scared him a little.
The doctor agreed that it probably WAS Fibro and Lupus just wildly out of control and my usual stuff wasn't reigning it in. I had to do more, or in this case: I had to do less. I started to cry. I already don't have time to get it all done and now I have to do LESS? But I was told I had no choice.
Remember not too long ago, I had the post where it felt so many people asked so much of me because I'm a stay at home mom so I obviously have the time and energy to do it. Now I have to learn to say NO more often. Before I left the doctor, it came down to 140/90. Ten minutes later when I was at the pharmacy waiting on my meds, it was back to 155/105. I got prescribed my "Zombie Cocktail": Flexeril, Vicodin and Xanax. Rick was home and making sure I stayed in bed, he cooked our dinner, he took over talking to Cooper about school that Cooper's been neglecting. He stepped up in Good Husband form while I stayed in bed. But I can't do this anymore.
This isn't who I am anymore.
When Carly got home yesterday, the first thing she said to me was: What are you on???
It reminded her of how I used to be: out of it and drugged up. She spent a lot of her childhood with me like that; in bed, drugged up, trying to survive without living. Without thriving.
I cannot go back there again.
I've tried to do things recently to be more productive, like creating a schedule, etc, and I've been pretty good at sticking to it. Now that I've done something so proactive about it, I'm being forced to put on the brakes.
I worry about the condition of the house. My old house was just... a dwelling we survived in. I know my situation was different back then, I didn't care a lot about what was going on due to that situation. I'm not that person anymore. I don't live in that type of house anymore. I've created this life that while it isn't perfect, the house is company ready at all times. Not museum quality by any stretch of the imagination, but a nice comfy home where people can come in and out and I'm okay with it. My old house -- NO ONE ever came over. Now our door revolves and I LIKE it that way.
Rick lived alone a long time, without the chaos and mess that comes with kids, and his house was always magazine ready. He's relaxed his standards a lot while I've upped my standards a lot and for the most part, we've come to a good balance. Our first year together, he was home and helped a lot, and somehow, with a little time and reordering my life, I've learned to keep it up without his full-time help like I used to have. Sure, things need dusting. I always have too much random stuff in the laundry room. I don't always have all the little spots totally picked up, and there are fingerprints on light-switches and dust along the baseboards that I can't get with the regular mop all the time, but I try and he's relaxed a lot.
But now that I'm being forced to ease up, I worry about what will happen with the house. The kids will have to step up, of course, and that will be easier with summer coming up and them being home. To relieve the extreme stress my body is apparently under, I have to relax my standards on other stuff, and the idea of relaxing on the other stuff ups my stress levels.
The irony does not escape me.
So I'm not sure what to do. I have to listen to my body much better than I have been in the last month. I have to say no more often. I have to space out the Scout stuff more because I can't keep doing it all. I have to slow down on my plans to create.
I guess I'm scared. I've worked really, really hard creating this life over the last three years. What if my having to relax the standards (which are questionable as is, apparently) has me losing everything I worked so hard for?
And I don't really have a choice. My body CANNOT take it.
Sometimes I wish Fibro and Lupus were these HUGE gaping wounds that people could SEE. I don't like "looking" normal when nothing in my body is normal at all. When I park handicap, which I've done six years now, EVERY.SINGLE.TIME I think people are judging me because I "look okay". I have to stop worrying about that. I have to stop worrying whether or not people forget my medical conditions, even in my own family. It is there, even if you can't see it. It HURTS, even if I don't show it. My foggy mind TRIES but doesn't always succeed. I have to acknowledge that this is real, it WILL kill me if I'm not careful, and if others have a problem with it, with what I can do, what I can't do, if I haven't done enough -- that has to be their problem, not mine. I have to breathe in and out of their impatience with my abilities and know in my heart it's the best I can do.
Yup, I'm scared.
I thought writing out this blog with a more thorough update would be cathartic and a stress-reliever. It didn't work. Putting it on paper (so to speak) has my fever spiking again (I can feel it when it happens -- and my face turns neon red.) So if I forget I hadn't told you something, I thought I had, and I apologize. If I've told you something more than once, forgive me -- I just don't remember. If I have to say no to something that seems simple, it's not personal. If you need something, anything, from me, I'll give it, but it may not be immediately. It may not be quickly.
I have no choice. I have to make some changes. So bear with me, friends, and know my love is one thing that will never change.
~Brenda
I have Fibromyalsia and recently we added Lupus to it. Fibro comes with this thing called Fibro Fog, and when I'm in a bad cycle, my memory just goes, thoughts linger on the edges but fade into the distance. I'll tell Rick something a gazillion times but then find out later I hadn't mentioned something to Margaret or my Mom and feel so badly. From Rick I hear, "I've heard this 10 times already" and from Margaret or Mom I hear, "Why didn't you tell me?" So now I have to stop and ask, "Have I told you this already?" Most people know it comes with who I am now, but for others, it can be irritating. I pray I never get Alzheimer's because if Fibro Fog is this irritating to my loved ones now, I can't even imagine how they may or may not tolerate me with that horrific disease.
So, things have been crazy. My SD card is shoved full of things I need to upload and post about. Crafts I've done, Girl Scout events from camping to kayaking, Carly's prom which was in MARCH, and her last high school performance which was last night. It freaks me out a little that today is already Thursday of yet another week, and freaks me out even more when I remember we're in MAY now. Before I know it, Mom and I will be contemplating whether or not last year was really our last year to do Black Friday. I can't keep up. Time is slipping too quickly through my fingers and it worries me.
And April is so rough for me on most years: Lots of time Easter is there plus Carly and Sydney's birthdays, which are only a day apart. But this year, I had a major Girl Scout event each weekend for Scouts. I can't seem to get Time to just sloooooooooooooooooooow just for a little bit. And now that April is over, and I survived it all (YAY!), the Fibro/Lupus I fought extra hard last month, well, it won.
Every day I run fever. It's just part of it. As are the constant body aches, the knotted muscles, the headaches, the horrible sleep (it's hard to sleep in chronic pain). But last week, it seemed to worsen. I thought it was maybe a little too much sun during kayaking. I thought maybe the extra aches were kayaking against the wind. But as of Wednesday (yesterday), it wasn't better, so I voluntarily did something I hardly EVER do: I broke down and went to the doctor.
Disclaimers:
I've smoked a long time.
Even when I weighed 218, I didn't have high blood pressure.
For those who know, I've battled an issue with my foot for a year now. So... I've been to a LOT of doctors over the course of the last year. Monday at the store, three different strangers asked me if I was okay -- guess I looked ready to fall over. Yesterday, however, when they took my blood pressure, it was 175/90. It's normally 128/67 since losing the weight. When I was 218, it was still in the 130/75 range. This new number yesterday... well... that was scary.
It was scarier when they wouldn't let me leave until it came down because I was "in stroke range". Before the doctor came in, I'd texted Rick with the blood pressure reading. I hadn't replied after that because the doctor had come in and my phone was off. When I got out of the office, Rick called: He was on his way home. Apparently my numbers scared him a little.
The doctor agreed that it probably WAS Fibro and Lupus just wildly out of control and my usual stuff wasn't reigning it in. I had to do more, or in this case: I had to do less. I started to cry. I already don't have time to get it all done and now I have to do LESS? But I was told I had no choice.
Remember not too long ago, I had the post where it felt so many people asked so much of me because I'm a stay at home mom so I obviously have the time and energy to do it. Now I have to learn to say NO more often. Before I left the doctor, it came down to 140/90. Ten minutes later when I was at the pharmacy waiting on my meds, it was back to 155/105. I got prescribed my "Zombie Cocktail": Flexeril, Vicodin and Xanax. Rick was home and making sure I stayed in bed, he cooked our dinner, he took over talking to Cooper about school that Cooper's been neglecting. He stepped up in Good Husband form while I stayed in bed. But I can't do this anymore.
This isn't who I am anymore.
When Carly got home yesterday, the first thing she said to me was: What are you on???
It reminded her of how I used to be: out of it and drugged up. She spent a lot of her childhood with me like that; in bed, drugged up, trying to survive without living. Without thriving.
I cannot go back there again.
I've tried to do things recently to be more productive, like creating a schedule, etc, and I've been pretty good at sticking to it. Now that I've done something so proactive about it, I'm being forced to put on the brakes.
I worry about the condition of the house. My old house was just... a dwelling we survived in. I know my situation was different back then, I didn't care a lot about what was going on due to that situation. I'm not that person anymore. I don't live in that type of house anymore. I've created this life that while it isn't perfect, the house is company ready at all times. Not museum quality by any stretch of the imagination, but a nice comfy home where people can come in and out and I'm okay with it. My old house -- NO ONE ever came over. Now our door revolves and I LIKE it that way.
Rick lived alone a long time, without the chaos and mess that comes with kids, and his house was always magazine ready. He's relaxed his standards a lot while I've upped my standards a lot and for the most part, we've come to a good balance. Our first year together, he was home and helped a lot, and somehow, with a little time and reordering my life, I've learned to keep it up without his full-time help like I used to have. Sure, things need dusting. I always have too much random stuff in the laundry room. I don't always have all the little spots totally picked up, and there are fingerprints on light-switches and dust along the baseboards that I can't get with the regular mop all the time, but I try and he's relaxed a lot.
But now that I'm being forced to ease up, I worry about what will happen with the house. The kids will have to step up, of course, and that will be easier with summer coming up and them being home. To relieve the extreme stress my body is apparently under, I have to relax my standards on other stuff, and the idea of relaxing on the other stuff ups my stress levels.
The irony does not escape me.
So I'm not sure what to do. I have to listen to my body much better than I have been in the last month. I have to say no more often. I have to space out the Scout stuff more because I can't keep doing it all. I have to slow down on my plans to create.
I guess I'm scared. I've worked really, really hard creating this life over the last three years. What if my having to relax the standards (which are questionable as is, apparently) has me losing everything I worked so hard for?
And I don't really have a choice. My body CANNOT take it.
Sometimes I wish Fibro and Lupus were these HUGE gaping wounds that people could SEE. I don't like "looking" normal when nothing in my body is normal at all. When I park handicap, which I've done six years now, EVERY.SINGLE.TIME I think people are judging me because I "look okay". I have to stop worrying about that. I have to stop worrying whether or not people forget my medical conditions, even in my own family. It is there, even if you can't see it. It HURTS, even if I don't show it. My foggy mind TRIES but doesn't always succeed. I have to acknowledge that this is real, it WILL kill me if I'm not careful, and if others have a problem with it, with what I can do, what I can't do, if I haven't done enough -- that has to be their problem, not mine. I have to breathe in and out of their impatience with my abilities and know in my heart it's the best I can do.
Yup, I'm scared.
I thought writing out this blog with a more thorough update would be cathartic and a stress-reliever. It didn't work. Putting it on paper (so to speak) has my fever spiking again (I can feel it when it happens -- and my face turns neon red.) So if I forget I hadn't told you something, I thought I had, and I apologize. If I've told you something more than once, forgive me -- I just don't remember. If I have to say no to something that seems simple, it's not personal. If you need something, anything, from me, I'll give it, but it may not be immediately. It may not be quickly.
I have no choice. I have to make some changes. So bear with me, friends, and know my love is one thing that will never change.
~Brenda
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