You ever have moments when you don't feel like you even exist?
Like
you used to be somebody. You had your talents. You had your
pleasures. People knew you by the sound of your voice and the cadence
of your spirit. Boundless energy when conversation flowed toward your
interests and soap boxes. And people listened when they asked you a
question. The actually listened to your answer.
They looked you in the eye.
They asked for you by name.
You existed.
But now...
Now. Nothing.
You
might be able to breathe - sometimes. You might be able to walk into a
room - sometimes. You might even look fine - sometimes. But for the
majority of the time, you can't. And yes, people who know and love you
care and ask about how you are. But they don't really want to hear the
answer. They ask and ramble on with their energy, right over your
answer, so you stop talking. Stop existing.
Can't move. Can't breathe. Can't think. Can't speak and form sentences and even sound intelligent!
I have degrees. I have held jobs. I have talents...I used to be somebody!
Thank God I can edit what I write. Otherwise I'd feel smaller than I do...
I
don't usually do this. Talk about what it's like to have Lyme disease. I
honestly don't want it, despite what doctors said for years before I
got a diagnosis. That I was faking my illness. That I wanted the
attention.
That I was just a depressed housewife.
Actual
diagnosis when I almost died in the ER years ago... If I were a guy and
having an issue with not being able to get it up, they'd have figured
it out! New medical breakthrough! The penis will rise again!...
Be a blond fit woman who doesn't LOOK sick and see what they do.
Nothing.
Probably why I feel like I'm about this [.] small sometimes.
Don't
get me wrong. I have my good days. But even my good days are, bottom
line, unacceptable. They're not me. I'm not even in them. I'm just a
spectator watching from my wheeled seat.
Saturday, December 7, 2013
Friday, March 22, 2013
POTS due to Lyme Disease... Who Knew?!
I have Lyme Disease…Who knew?
I mean, really... WHO KNEW!?!?!?!?
This is how I got my diagnosis… and don’t worry. This story of mine is repeated all the time throughout this country of ours because some doctors and all insurance companies do not want to treat Lyme disease… so we all get to suffer from their lack of compassion and gift of ignorance… but I digress. Here’s my story – the short and to the point version…
Close to 6 years ago, I was stricken suddenly by a mysterious illness. I all-of-a-sudden couldn't stand, walk, eat, talk, dance, go up stairs or sit without losing my breath, having presyncope episodes (pre=right before, syncope=fainting). I was achy all over. I was sweating horribly at night, waking up in pools of sweat. When I could sleep... I was "breath hungry" all the time. And I had lost all my balance, which helped me trip and fall into enough things in one summer (summer of 2007) to break my pinky toes repeatedly. Left pinky toe 8 times. Right pinky toe 7 times. And my hair was falling out, breaking off, turning dull. My skin was graying also. I couldn't drink enough water, always feeling dehydrated. My skin dried out. I fainted a few times. I couldn’t sleep. Eat. Work. Play. Nothing... And let's not forget about the brain fog. OMG. Here I'm was an educated blonde chic sounding like a real dumb blonde. I couldn't even think of the word "banana" let alone sound intellegent or remember anything anymore...it sucked the big one...
So I went to the doctors, of course, because they fix you up when you're ill. I went in for a number of things over the course of a few months:
· broken toes? doc said to tape them
· hair loss? doc says hair looks fine
· blood tests? doc says they all are coming back "normal", stop coming into office, labs cost $$$
· can't eat? doc says nothing, stop bothering me
· chest pains? doc asks if I'm crazy as a 30 something year old can't have heart attacks. go take a Tums
Then the actual Lab I had blood taken at calls me to inform me I have Lyme Disease. I go in to see my doc as they recommend I do.
· Lyme disease? doc says he doesn't know why anyone would call to tell me it's positive. It's clearly negative. Go see a neurologist
· see neurologist.. neurologist says I'm "a depressed housewife" and I "need to find my center"
...
And so it goes for close to 6 years. Continuous decline in health. More doctors. More testing. More radiation. More blood taken. Loss of not only some hair and ability to live life to the fullest, but also my own business and then, after I gain employment elsewhere, my job. Can't work, can't drive, can't breathe. This sucks. Go to tons of docs, they run TONS of tests... and for what?
All normal in range. Sorry chica.
Well, except for one. A POTS specialist I sought out after doing my own research of my symptoms. And he does a tilt table test and says I have POTS. Not that anything can be done about it as no medications work on me, but at least we have something to yell at. An acronym.
Well, except for one. A POTS specialist I sought out after doing my own research of my symptoms. And he does a tilt table test and says I have POTS. Not that anything can be done about it as no medications work on me, but at least we have something to yell at. An acronym.
Yeah.
Well, guess what? Just this last December (2012) I stormed into my docs office demanding a new referral (the 4th one) to a new neurologist who UNDERSTANDS that no drugs will work, but will STILL work with me to help manage my POTS... I go to see him. He says he's overjoyed being my 4th neurologist - says a lot of what I've been through trying to get healthy for the past half decade. Wants to redo ALL my labs. Includes Lyme on the slip.
I laugh out loud.
I almost cross LYME off the lab list before getting my blood taken. What a waste. Doesn't he know I've been tested for LYME 3 times over the past years? And they all come back negative?
I almost cross LYME off the lab list before getting my blood taken. What a waste. Doesn't he know I've been tested for LYME 3 times over the past years? And they all come back negative?
Lyme... this guy is nuts...
Then I get a phone call from my 4th neurologist.
"Ms. Mack, your labs all came back normal except for Lyme. I think that's what you've had all this time. And now that we're going to treat it, you'll feel better soon."
That was 3 months ago. And you know what? Not only did a diagnosis of Lyme - now Chronic Lyme - cause a lot of frustration and fear and trouble (aka, $$$) as no docs treat Lyme under insurance companies because insurance companies refuse treatment and there's a WHOLE new world of contraversy where Lyme is involved...but....I AM GETTING BETTER!!!!
I'll say it again... I'M GETTING BETTER!!!
No, it's not 100%. Yes, I tend to have POTsie days here and there... BUT... they aren't every day, all day. I can go a whole week before I feel dizzy, and it might only last for a few minutes.
WOW! It's totally insane to feel better again, even if only sporadically and on occasion. I went from having 1 symptom free day in 5 1/2 years to having symptom free DAYS every week... DAYS, people!
So what does this tell me? That my Godsend 4th neurologist was right. Lyme is what I've had ALL THIS TIME!
I can see the light at the end of the tunnel. It's a ways away - as I've been ill and untreated for a LONG time... but it's there. One woman who was undiagnosed/untreated from having Lyme for 6 years said it took her 1 1/2 years to get to 100%... that's a ways a way...
but it's there...
but it's there...
I do have HERX days which are days the bactieria is dying off and releasing toxins, so it always feels like I'm going backward on those days. All my POTS symptoms come back and I feel 100% worse... But then a few days later, after the die-off, I feel better than I did on a previous "good" day. And my "good" days keep getting better and better. Now, that's what I like :)
So, it's a rough battle, and not one I have energy for... or money as I can't stay employed when I can't drive into work every day...or stay all day when I finally get into the office.. but I will continue to battle on the days I feel good. On the days I feel bad, I rest. Resting when you need to is a lesson that's taken me all this time to realize and learn. I'm almost at peace with letting go and resting. Almost.
It's the only way to get better. So battle on I will.
Friday, October 19, 2012
Maybe On Second Thought...
So, I'm not so sure about the compression stockings... I seem to still feel the earth, move, under my feet. I feel the sky falling down, oh, tumbling down. And my heart's still tremblin'...
Like how I did that? ;)
Okay, okay. Back to the program...
They are tight, I'll give them that.
And a highly depressing PITA! (Pain In The Ass) to get on. 10 mintues, 5 minutes a leg to get the darn things on. And the same amount of time getting them off (okay, maybe only 2 mintues, but you HAVE to be careful not to snag them. They are sitll pantyhose...pantyhose on steriods maybe...but pantyhose still.)
This is day three and I might try them over the weekend - Might. I don't know. I still feel "odd" and not quite right, but in a whole new way, and I'm not sure I have the stamina to figure out how to function in a new odd, not quite right way.
I wish I had someone to talk to who was doing this same thing right now. I found a HUGE group of POTsie peeps on facebook, requested to join... but haven't heard from the group leader yet. Here's to hoping they aren't too tired or foggy to check for new comers, lol.
If you can't tell, I'm in a bit of a mood. I can't be all cheery and sunshine today. Maybe it's because it rained heavy this morning and promised to be a nice chilly day...but turned gross warm and muggy. And I'm in a sweater. And boots. And jeans. AND TIGHTS! Anyone got a fan?!
UGH...
I still feel wonky. That's the only word that ever seems to fit.
So should I continue to wear them? Tough it out for a week and see? Take them back? (I mean, they were $120!!!)...
I don't know what to do. I sure do wish I had a real life doctor who knew what they were doing and could help me. Steer me in the right direction.
Like how I did that? ;)
Okay, okay. Back to the program...
They are tight, I'll give them that.
And a highly depressing PITA! (Pain In The Ass) to get on. 10 mintues, 5 minutes a leg to get the darn things on. And the same amount of time getting them off (okay, maybe only 2 mintues, but you HAVE to be careful not to snag them. They are sitll pantyhose...pantyhose on steriods maybe...but pantyhose still.)
This is day three and I might try them over the weekend - Might. I don't know. I still feel "odd" and not quite right, but in a whole new way, and I'm not sure I have the stamina to figure out how to function in a new odd, not quite right way.
I wish I had someone to talk to who was doing this same thing right now. I found a HUGE group of POTsie peeps on facebook, requested to join... but haven't heard from the group leader yet. Here's to hoping they aren't too tired or foggy to check for new comers, lol.
If you can't tell, I'm in a bit of a mood. I can't be all cheery and sunshine today. Maybe it's because it rained heavy this morning and promised to be a nice chilly day...but turned gross warm and muggy. And I'm in a sweater. And boots. And jeans. AND TIGHTS! Anyone got a fan?!
UGH...
I still feel wonky. That's the only word that ever seems to fit.
So should I continue to wear them? Tough it out for a week and see? Take them back? (I mean, they were $120!!!)...
I don't know what to do. I sure do wish I had a real life doctor who knew what they were doing and could help me. Steer me in the right direction.
Tuesday, October 16, 2012
Compression Stockings... Every POTies' Dream...
So, today I took another step toward what could potentially be a break-through therapy to help with my POTS!... then again, it could end up just like everything else: it works for a while and then stops working. Or worse. It makes things worse!
No, I’m not a downer (there is a better word that I’d rather use here, but it would probably take me all day to recall it.. oh, thank you POTS for killing my vocab…)
Jaded!
Jaded is what I was looking for, lol.
SO… No, I’m not jaded J.
I’m just realistic after 4 ½ years of trying everything to find that nothing works for long. I will list all the medications and therapies I’ve tried in the past. You’ll think I’m making it up (unless, of course, you’re a POTSie like me and in the same boat)
Today, I got fitted for compression stockings. Got a pair too.
Opaque beige.
Ooooh la la. Can’t wait to wear them tomorrow… I’m hoping my insurance comes back that they will pay for them. I’m not the sort of person to spend over $100 for a pair of panty-hose, LOL.
What are compression stockings, you ask? They are waist high TIGHT tights that will help your blood stay where it’s supposed to be – your brain, heart, lungs, gut – and stay away from where it’s not supposed to pool – your legs. Here’s to hoping they work some. I sure do miss singing. Standing. Walking. Doing all three at the same time.
To get the compression stockings, I had to have my neurologist fax in a prescription stating the weight (20-30mmHg) and my diagnosis (POTS/Dysautonomia). I’ll post a pick of me in my new tighty-beigies tomorrow ;) Hope my boots come in the mail in time!
Oh, the boots. That’s what I do to feel good about going through medical procedures (or buying $100 panty hose)… I buy shoes.
Got to make lemonade somehow out of this sour POTS stuff…
;)
Monday, October 15, 2012
It's GLOBAL Dysautonomia Awareness Month! October 2012...
What do you know... it's GLOBAL Dysautonomia Awareness Month!
I totally didn't get the memo, lol...
Well, better late than never:
Here's post #1 ;)
A video sumerizing what POTS is and some helpful hints and tips for treatments...
NOTE: there is a % of POTSies (people with POTS) that do not respond to ANY medication. Or alternative therapy plan. This is a fact to keep in mind. Not putting out a downer to start off the awareness blog posts... just something that needs to be kept in mind.
I totally didn't get the memo, lol...
Well, better late than never:
Here's post #1 ;)
A video sumerizing what POTS is and some helpful hints and tips for treatments...
NOTE: there is a % of POTSies (people with POTS) that do not respond to ANY medication. Or alternative therapy plan. This is a fact to keep in mind. Not putting out a downer to start off the awareness blog posts... just something that needs to be kept in mind.
Wednesday, September 12, 2012
30 Things About My Invisible Illness You May Not Know…
For Invisible Illness Awareness Week (September 10-18th), bloggers across the web will be posting their own version of this blog-meme. If you have an Invisible Illness, feel free to copy the starters below and post your own “30 Things About My Invisible Illness You May Not Know…”
Here are mine…
30 Things About My Invisible Illness You May Not Know…
1. The illness I live with is:
POTS. And no, not the kind you smoke. P.O.T.S. Postural Orthostatic Tachycardia Syndrome. Its’ a form of Dysautonomia – the Dysfunction of the Autonomic Nervous System. Who knows how I got it or how to fix it, but that’s what it is. POTS. So I can’t sit, stand, walk, talk, run, eat, or drink a lot at one time without all my blood pooling down in my legs, therefore giving the rest of my body minimal blood to work with -- not much getting to my lungs (can’t breathe), my digestive tract (can’t eat), my brain (can’t think), or my heart (so it speeds up like crazy!) Feels like someone is sitting on my chest, I’m being strangled, multiple pin-point “coat-hanger” headaches, and I feel like I'm about to pass out (pre-syncope) and am ultra fatigued all day long.
Because of this Hypovolemia effect – low blood volume - I need to take salt (3-5 teaspoons/day) with tons of liquids so I can build blood volume all day so I can function. A trip to the potty brings me back to square one as my body doesn’t hold salt (water cleans my body out of salt) so I have to drink water/take salt all over again. Drinking plain water can dehydrate me if I don’t add salt. One doc told me to drink pickle juice every day...which some days I do and it doesn't taste salty at all, so I know that day I needed more salt than others.
Because of the POTS and the Hypovolemia, I am very heat intolerant - duh - since sweating can dehydrate me to the point of passing out. And we're not talking marathon sweating. Just normal in the sun, outside having a good day perspiration. So I am locked up in AC all summer. In the winter, the humidity mixed with the cold makes everything hurt and I have the pre-syncope to deal with too... So odd, isn't it? Sometimes even I feel like I'm making this up...
2. I was diagnosed with it in the year:
About 5 years ago, a year after the 32 year old actress Brittany Murphy died. The news of her death and the long list of her symptoms were so familiar to what I had been dealing with, I became crazed to find a doctor who could help me. After I found the ONLY doctor my side of the Mississippi who specializes in POTS, I waited another 8 months for an opening, and I was finally seen. I waited a few more months for a Tilt-Table test, and was diagnosed within 3 minutes of the table being up-right. The fact he made me stay up for an additional 7 minutes is reason-one I’ll never do another Tilt-Table test again. Torture, no thank you.
3. But I had symptoms since:
Since I’ve become diagnosed with POTS and have done research on it, I have found that what I’ve been dealing with since I was 15 is all tied together: Endometriosis, Sciatica, not sweating (which I always thought was a blessing…). Thankfully the Endometriosis is no longer an issue.
4. The biggest adjustment I’ve had to make is:
Knowing the medical establishment CANNOT help me. No medication can help. Since it's a "syndrome" there is nothing that can be done. So where does that leave me? I have to take care of this myself. Period. Whatever it takes. So, if the only way to ‘cure’ me – so I can live my day to day without pain and suffering – is to up and move to San Diego (where my POTS doesn’t bother me AT ALL)… then I have to be SELFISH. This is a very hard adjustment for me: putting myself first. I have to make life altering decisions with me at the forefront. Impossible… However, if I don’t put myself first, then I won’t be around for those who need me. So I have to do it. I have to put myself first.
5. Most people assume:
That I’m totally healthy since I look nice and trim and fit and have long blonde hair… You’d be surprised to know the very doctor who diagnosed me with POTS said to me (years later when he hit a brick wall and didn’t know what else to do) said, “You’re young. You look healthy. Go enjoy your life.” WTF. I PUSH myself to look good/nice every day, but for me. Why? So when I look in the mirror, I don’t want see sick little ol’me. I want to see what I want to be – fine, okay, healthy. But that seems to backfire when even people closest to me ‘forget’ what I’m hiding by looking good and smiling through, so they push me to be more normal - go on long shopping trips, walk and stand around talking, normal stuff... When it doesn’t work because I can’t do it, they get upset and make me feel like I’m making this all up. “But you look fine!” they say…
6. The hardest part about mornings are:
Waking up totally dehydrated since I didn’t drink water/take salt all night. I can’t open my eyes (dry), my mouth is dry, my nose is dry, my legs are tight/hurt and my arms/hands feel like there are metal rods drilled through them, probably since I have limited blood flow to them… that’s my guess anyway. No doctor can tell me why.
Also, waking up to realize today is not going to be a good day. Some days I wake up and I’m feeling bad, but not so bad. Those days I can pretend I’m not sick, totally normal, and I can be myself: my boisterous, too-happy, silly-dancing, loud-singing, mornings-are-the-best-part-of-the-day, me! Those are the days I cherish and enjoy. But they don’t come in packages and they are few and far between. I hate all the other mornings when I wake up and I’m already at the end of my short rope. I hate having to say, “Sorry. I can’t do it,” and it’s not even 8am.
7. My favorite medical TV show is:
I used to watch the “Big C”, but I’m not really big into medical dramas.
8. A gadget I couldn’t live without is:
My phone. I can text my husband small snippets here and there like, “bad brain day o_0” or “I still can’t breathe” and just let those texts go on without me having to say it out loud and sound like a broken record. And then, when the bad moment has passed, I can text him that I’m good to go! Happy! Can breathe again! And feel as though someone is there with me for bad moments and cheering for me in the good.
9. The hardest part about nights are:
Thinking back on the day to all the moments when, if I didn’t have POTS, I would have been able to stand outside while my daughter road her bike, or take the dogs for a walk, or take my son to the park, or enjoyed alone time with my husband. But instead I had to say, “I’m sorry, I can’t. Having a bad POTS day. Again.” If I didn’t have POTS, I’d be all over the place! Jump out of bed, go for a run with the dogs, have a great day at work, go on a bike ride with the kids, cook dinner, EAT dinner and be able to breathe! And not complain all night – like a broken record – to my husband. But instead enjoy our quite moments together.
10. Each day I take:
No medications. Because I have POTS, meds don’t work the same in my body as they are supposed to. For about 9 months I took a pill that worked which I nicknamed “The MAGIC Pill”… because it worked, like magic! I could run, eat, live, breathe :) … Then it stopped working so I had to stop taking it.
So instead I… Drink salted lemonade -- 1:1 parts water (12oz) to lemonade (12oz) with 1 TSP of salt, 3-5 times a day, depending on how much salt I need. It really helps with the dehydration.
11. Regarding alternative treatments I:
I drink my salted lemonade all day, every day, and over salt my food and drink LOTS of liquids. No matter the odd looks and comments I get (because most people think salt is the devil). I have to do it if I want to function. I love to be physically active too, and for most POTS people, this can alleviate POTS a great deal. But it depends on the day/weather. If it's too hot - summer - or too cold - winter, I can't move from pain and not being able to breathe. In the Fall and some weeks in the Spring I feel great and can start being physically active again.
When I was taking my magic pill I tried to exercise 5x's a week (doc's orders). It took me 6 months to be able to do a whole Zumba class. But the thing is – I could do it! A whole hour of total excursion! It was great fun and got the blood moving for sure! On most days, 1/2 hour after I stopped moving I'd feel totally fatigued and wasted. But I like to hold on to the memory of feeling great and normal for that hour. I love that feeling so much that I push myself to do it many times a week, no matter how I’ll feel afterward. Some days are better than others (Fall/Spring).
However, when I’m in San Diego, I can automatically run like I never stopped running. My heart doesn’t speed up, I don’t feel dehydration pain, I'm NEVER fainty, I can just run up stairs and do anything like I’m normal again… Something about the barometric pressure there not changing much. Oh, the invisible forces of gravity...
12. If I had to choose between an invisible illness or visible I would choose:
not in the mood for this question today…
13. Regarding working and career:
People who battle an illness on a daily basis find employment a blessing and will be the best employees you have because they don’t take their job for granted. Don’t make them feel fear or shame for wanting to do their job. Most, myself included, only need a small adjustment to make working doable. So help them out!
14. People would be surprised to know:
That there are three 5K’s I wish I was running right now, that I hate being stuck indoors in the air-conditioning, and I DO NOT want to explain how I feel. Can we just pretend I’m fine and move on?... thanks… But yeah, I do still want you to understand that no, I can’t go stand in line at the mall with you and walk around and go shopping. Or go hiking. Or biking. Or kayaking. Or walking. Or stand in the hallway and talk. Or walk up the stairs… or eat the dinner you made… I hate this. I hate it! I hate it! I hate it! I hate it! I just want to be me again...
15. The hardest thing to accept about my new reality has been:
Reality. Honestly, I prefer to function in pure denial. I still, even after all these years, still think I’m going to wake up tomorrow and my POTS will be gone and I’ll be fine from here on out. I understand life without challenges makes us weak, but shit. I didn’t do anything to give myself POTS. I never did drugs. I never put myself in harm’s way and did something foolish to hurt myself. I can’t even drink a whole glass of wine without dehydrating myself because of POTS. I follow all the rules and do everything right and I got POTS. I can’t stand people who do foolish things and take their health and life for granted.
16. Something I never thought I could do with my illness that I did was:
Teach Zumba! I used to be a semi-professional dancer before I had to stop dancing due to sciatica. BUT…For a while, and not too long ago, I taught 3 zumba classes a week. That was while I was taking the “magic pill” that made me capable again ;). That was fun. Hopefully I’ll find a new treatment so I can get active again. I LOVE being active and enjoying life!
17. The commercials about my illness:
There are no commercials for POTS. It’s very unknown, misunderstood, and misdiagnosed. There is a documentary called “Changes: POTS/Dysautonomia” (on YouTube) that I found and was afraid to watch. I was worried it would spell out the end since every day I get moments that feel like the end… But it didn’t. It was positive and informative.
18. Something I really miss doing since I was diagnosed is:
RUNNING! Every time I’m in San Diego, I run on the beach every morning. In the Fall I can run once and a while, but not like when I'm in California. I also love to dance, be physically active and NEVER EVER rely on someone to help me up the stairs! Oh, I hate having to cater to POTS… I miss being able to go for a hike with my kids and take them to the park and be super mom! I was… Am… I’m not giving up the dream that someday soon I will be again. My kids deserve to have their mom back!!
19. It was really hard to have to give up:
My body. My body is not my own with POTS. It consumes every aspect of my being. Eating, breathing, walking, singing, dancing, talking. Bad POTS moments/hours/days can come out of nowhere and steal my body away. Without warning. Some days I have more moments to keep. Other days, I get them all taken away...
20. A new hobby I have taken up since my diagnosis is:
Is functional-denial a hobby? I’m just trying to hold onto my passions – writing, cooking, loving my family and taking care of Mother Earth :)
21. If I could have one day of feeling normal again I would:
Grow my garden. I used to have a really nice kitchen garden, compost and all. I had plans to add a chicken coop and bees. If I had a normal day, I’d get that all back up and running! Then I’d have yummy sun warmed tomatoes on the vine and fresh eggs in the backyard…
22. My illness has taught me:
I am worth a bit of selfishness. If I don’t feel up to it and know it’ll make my POTS symptoms worse, I say no and don’t feel sorry for it. If I can’t do it, I don’t. Some people have fallen off my radar, but those I love and need the most – my family and closest friends – are still with me. That’s all I need.
23. One thing people say that gets under my skin is:
“But you look so great!” “But look so in shape!” “But you look so young!”
24. But I love it when people:
Just by looking at me know – KNOW – that its’ a bad day and they don’t ask anything of me. It’s sad, but it’s a great feeling to know you’re understood by someone, somewhere, and you don’t have to pretend to be okay, just this once.
25. My favorite motto, scripture, quote that gets me through tough times is:
the one I made up about lemonade… :) "Life gives you lemons. Why live in sourness when all you have to do is add a little sugar? So go out and make some sugar in your life! Then instead of lemons to live with, you'll have lemonade to enjoy and share :)"
26. When someone is diagnosed I’d like to tell them:
Be your own advocate. I would have never been diagnosed if I hadn’t forced myself into doctor office after doctor office, looking for answers. You know your body best. If you think it’s not normal to not be able to breathe all day, then find someone who can help you! You might have to go through a slew of doctors, but you deserve answers. No one is going to take better care of you than you.
27. Something that has surprised me about living with an illness is:
How much more hard-headed I can become. When doctors and/or treatments aren’t working, I will be the squeakiest wheel ever to get my way – a better treatment… or a better doctor! “I WILL get better, damn it. Now, move out of my way!”
28. The nicest thing someone did for me when I wasn’t feeling well was:
Smiled sad along with my sad smile, held my hand and sat with me. It sucks. But it's nice not to have to do it all alone.
29. I’m involved with Invisible Illness Week because:
I don’t like to talk too much about it – I’d rather it too be invisible and not deal with it – but even I can’t hide the fact that it’s real. So, if everyone out there with an invisible illness spoke up and said something to bring light to the challenges they face on an hour by hour basis, then they won’t feel so alone. Not everyone will understand and be there for you. But you don’t need everyone. You just need those closest to you to know and understand.
30. The fact that you read this list makes me feel:
Wow. Thank you so much.
Please repost this or your own 30!
:)
Here are mine…
30 Things About My Invisible Illness You May Not Know…
1. The illness I live with is:
POTS. And no, not the kind you smoke. P.O.T.S. Postural Orthostatic Tachycardia Syndrome. Its’ a form of Dysautonomia – the Dysfunction of the Autonomic Nervous System. Who knows how I got it or how to fix it, but that’s what it is. POTS. So I can’t sit, stand, walk, talk, run, eat, or drink a lot at one time without all my blood pooling down in my legs, therefore giving the rest of my body minimal blood to work with -- not much getting to my lungs (can’t breathe), my digestive tract (can’t eat), my brain (can’t think), or my heart (so it speeds up like crazy!) Feels like someone is sitting on my chest, I’m being strangled, multiple pin-point “coat-hanger” headaches, and I feel like I'm about to pass out (pre-syncope) and am ultra fatigued all day long.
Because of this Hypovolemia effect – low blood volume - I need to take salt (3-5 teaspoons/day) with tons of liquids so I can build blood volume all day so I can function. A trip to the potty brings me back to square one as my body doesn’t hold salt (water cleans my body out of salt) so I have to drink water/take salt all over again. Drinking plain water can dehydrate me if I don’t add salt. One doc told me to drink pickle juice every day...which some days I do and it doesn't taste salty at all, so I know that day I needed more salt than others.
Because of the POTS and the Hypovolemia, I am very heat intolerant - duh - since sweating can dehydrate me to the point of passing out. And we're not talking marathon sweating. Just normal in the sun, outside having a good day perspiration. So I am locked up in AC all summer. In the winter, the humidity mixed with the cold makes everything hurt and I have the pre-syncope to deal with too... So odd, isn't it? Sometimes even I feel like I'm making this up...
2. I was diagnosed with it in the year:
About 5 years ago, a year after the 32 year old actress Brittany Murphy died. The news of her death and the long list of her symptoms were so familiar to what I had been dealing with, I became crazed to find a doctor who could help me. After I found the ONLY doctor my side of the Mississippi who specializes in POTS, I waited another 8 months for an opening, and I was finally seen. I waited a few more months for a Tilt-Table test, and was diagnosed within 3 minutes of the table being up-right. The fact he made me stay up for an additional 7 minutes is reason-one I’ll never do another Tilt-Table test again. Torture, no thank you.
3. But I had symptoms since:
Since I’ve become diagnosed with POTS and have done research on it, I have found that what I’ve been dealing with since I was 15 is all tied together: Endometriosis, Sciatica, not sweating (which I always thought was a blessing…). Thankfully the Endometriosis is no longer an issue.
4. The biggest adjustment I’ve had to make is:
Knowing the medical establishment CANNOT help me. No medication can help. Since it's a "syndrome" there is nothing that can be done. So where does that leave me? I have to take care of this myself. Period. Whatever it takes. So, if the only way to ‘cure’ me – so I can live my day to day without pain and suffering – is to up and move to San Diego (where my POTS doesn’t bother me AT ALL)… then I have to be SELFISH. This is a very hard adjustment for me: putting myself first. I have to make life altering decisions with me at the forefront. Impossible… However, if I don’t put myself first, then I won’t be around for those who need me. So I have to do it. I have to put myself first.
5. Most people assume:
That I’m totally healthy since I look nice and trim and fit and have long blonde hair… You’d be surprised to know the very doctor who diagnosed me with POTS said to me (years later when he hit a brick wall and didn’t know what else to do) said, “You’re young. You look healthy. Go enjoy your life.” WTF. I PUSH myself to look good/nice every day, but for me. Why? So when I look in the mirror, I don’t want see sick little ol’me. I want to see what I want to be – fine, okay, healthy. But that seems to backfire when even people closest to me ‘forget’ what I’m hiding by looking good and smiling through, so they push me to be more normal - go on long shopping trips, walk and stand around talking, normal stuff... When it doesn’t work because I can’t do it, they get upset and make me feel like I’m making this all up. “But you look fine!” they say…
6. The hardest part about mornings are:
Waking up totally dehydrated since I didn’t drink water/take salt all night. I can’t open my eyes (dry), my mouth is dry, my nose is dry, my legs are tight/hurt and my arms/hands feel like there are metal rods drilled through them, probably since I have limited blood flow to them… that’s my guess anyway. No doctor can tell me why.
Also, waking up to realize today is not going to be a good day. Some days I wake up and I’m feeling bad, but not so bad. Those days I can pretend I’m not sick, totally normal, and I can be myself: my boisterous, too-happy, silly-dancing, loud-singing, mornings-are-the-best-part-of-the-day, me! Those are the days I cherish and enjoy. But they don’t come in packages and they are few and far between. I hate all the other mornings when I wake up and I’m already at the end of my short rope. I hate having to say, “Sorry. I can’t do it,” and it’s not even 8am.
7. My favorite medical TV show is:
I used to watch the “Big C”, but I’m not really big into medical dramas.
8. A gadget I couldn’t live without is:
My phone. I can text my husband small snippets here and there like, “bad brain day o_0” or “I still can’t breathe” and just let those texts go on without me having to say it out loud and sound like a broken record. And then, when the bad moment has passed, I can text him that I’m good to go! Happy! Can breathe again! And feel as though someone is there with me for bad moments and cheering for me in the good.
9. The hardest part about nights are:
Thinking back on the day to all the moments when, if I didn’t have POTS, I would have been able to stand outside while my daughter road her bike, or take the dogs for a walk, or take my son to the park, or enjoyed alone time with my husband. But instead I had to say, “I’m sorry, I can’t. Having a bad POTS day. Again.” If I didn’t have POTS, I’d be all over the place! Jump out of bed, go for a run with the dogs, have a great day at work, go on a bike ride with the kids, cook dinner, EAT dinner and be able to breathe! And not complain all night – like a broken record – to my husband. But instead enjoy our quite moments together.
10. Each day I take:
No medications. Because I have POTS, meds don’t work the same in my body as they are supposed to. For about 9 months I took a pill that worked which I nicknamed “The MAGIC Pill”… because it worked, like magic! I could run, eat, live, breathe :) … Then it stopped working so I had to stop taking it.
So instead I… Drink salted lemonade -- 1:1 parts water (12oz) to lemonade (12oz) with 1 TSP of salt, 3-5 times a day, depending on how much salt I need. It really helps with the dehydration.
11. Regarding alternative treatments I:
I drink my salted lemonade all day, every day, and over salt my food and drink LOTS of liquids. No matter the odd looks and comments I get (because most people think salt is the devil). I have to do it if I want to function. I love to be physically active too, and for most POTS people, this can alleviate POTS a great deal. But it depends on the day/weather. If it's too hot - summer - or too cold - winter, I can't move from pain and not being able to breathe. In the Fall and some weeks in the Spring I feel great and can start being physically active again.
When I was taking my magic pill I tried to exercise 5x's a week (doc's orders). It took me 6 months to be able to do a whole Zumba class. But the thing is – I could do it! A whole hour of total excursion! It was great fun and got the blood moving for sure! On most days, 1/2 hour after I stopped moving I'd feel totally fatigued and wasted. But I like to hold on to the memory of feeling great and normal for that hour. I love that feeling so much that I push myself to do it many times a week, no matter how I’ll feel afterward. Some days are better than others (Fall/Spring).
However, when I’m in San Diego, I can automatically run like I never stopped running. My heart doesn’t speed up, I don’t feel dehydration pain, I'm NEVER fainty, I can just run up stairs and do anything like I’m normal again… Something about the barometric pressure there not changing much. Oh, the invisible forces of gravity...
12. If I had to choose between an invisible illness or visible I would choose:
not in the mood for this question today…
13. Regarding working and career:
People who battle an illness on a daily basis find employment a blessing and will be the best employees you have because they don’t take their job for granted. Don’t make them feel fear or shame for wanting to do their job. Most, myself included, only need a small adjustment to make working doable. So help them out!
14. People would be surprised to know:
That there are three 5K’s I wish I was running right now, that I hate being stuck indoors in the air-conditioning, and I DO NOT want to explain how I feel. Can we just pretend I’m fine and move on?... thanks… But yeah, I do still want you to understand that no, I can’t go stand in line at the mall with you and walk around and go shopping. Or go hiking. Or biking. Or kayaking. Or walking. Or stand in the hallway and talk. Or walk up the stairs… or eat the dinner you made… I hate this. I hate it! I hate it! I hate it! I hate it! I just want to be me again...
15. The hardest thing to accept about my new reality has been:
Reality. Honestly, I prefer to function in pure denial. I still, even after all these years, still think I’m going to wake up tomorrow and my POTS will be gone and I’ll be fine from here on out. I understand life without challenges makes us weak, but shit. I didn’t do anything to give myself POTS. I never did drugs. I never put myself in harm’s way and did something foolish to hurt myself. I can’t even drink a whole glass of wine without dehydrating myself because of POTS. I follow all the rules and do everything right and I got POTS. I can’t stand people who do foolish things and take their health and life for granted.
16. Something I never thought I could do with my illness that I did was:
Teach Zumba! I used to be a semi-professional dancer before I had to stop dancing due to sciatica. BUT…For a while, and not too long ago, I taught 3 zumba classes a week. That was while I was taking the “magic pill” that made me capable again ;). That was fun. Hopefully I’ll find a new treatment so I can get active again. I LOVE being active and enjoying life!
17. The commercials about my illness:
There are no commercials for POTS. It’s very unknown, misunderstood, and misdiagnosed. There is a documentary called “Changes: POTS/Dysautonomia” (on YouTube) that I found and was afraid to watch. I was worried it would spell out the end since every day I get moments that feel like the end… But it didn’t. It was positive and informative.
18. Something I really miss doing since I was diagnosed is:
RUNNING! Every time I’m in San Diego, I run on the beach every morning. In the Fall I can run once and a while, but not like when I'm in California. I also love to dance, be physically active and NEVER EVER rely on someone to help me up the stairs! Oh, I hate having to cater to POTS… I miss being able to go for a hike with my kids and take them to the park and be super mom! I was… Am… I’m not giving up the dream that someday soon I will be again. My kids deserve to have their mom back!!
19. It was really hard to have to give up:
My body. My body is not my own with POTS. It consumes every aspect of my being. Eating, breathing, walking, singing, dancing, talking. Bad POTS moments/hours/days can come out of nowhere and steal my body away. Without warning. Some days I have more moments to keep. Other days, I get them all taken away...
20. A new hobby I have taken up since my diagnosis is:
Is functional-denial a hobby? I’m just trying to hold onto my passions – writing, cooking, loving my family and taking care of Mother Earth :)
21. If I could have one day of feeling normal again I would:
Grow my garden. I used to have a really nice kitchen garden, compost and all. I had plans to add a chicken coop and bees. If I had a normal day, I’d get that all back up and running! Then I’d have yummy sun warmed tomatoes on the vine and fresh eggs in the backyard…
22. My illness has taught me:
I am worth a bit of selfishness. If I don’t feel up to it and know it’ll make my POTS symptoms worse, I say no and don’t feel sorry for it. If I can’t do it, I don’t. Some people have fallen off my radar, but those I love and need the most – my family and closest friends – are still with me. That’s all I need.
23. One thing people say that gets under my skin is:
“But you look so great!” “But look so in shape!” “But you look so young!”
24. But I love it when people:
Just by looking at me know – KNOW – that its’ a bad day and they don’t ask anything of me. It’s sad, but it’s a great feeling to know you’re understood by someone, somewhere, and you don’t have to pretend to be okay, just this once.
25. My favorite motto, scripture, quote that gets me through tough times is:
the one I made up about lemonade… :) "Life gives you lemons. Why live in sourness when all you have to do is add a little sugar? So go out and make some sugar in your life! Then instead of lemons to live with, you'll have lemonade to enjoy and share :)"
26. When someone is diagnosed I’d like to tell them:
Be your own advocate. I would have never been diagnosed if I hadn’t forced myself into doctor office after doctor office, looking for answers. You know your body best. If you think it’s not normal to not be able to breathe all day, then find someone who can help you! You might have to go through a slew of doctors, but you deserve answers. No one is going to take better care of you than you.
27. Something that has surprised me about living with an illness is:
How much more hard-headed I can become. When doctors and/or treatments aren’t working, I will be the squeakiest wheel ever to get my way – a better treatment… or a better doctor! “I WILL get better, damn it. Now, move out of my way!”
28. The nicest thing someone did for me when I wasn’t feeling well was:
Smiled sad along with my sad smile, held my hand and sat with me. It sucks. But it's nice not to have to do it all alone.
29. I’m involved with Invisible Illness Week because:
I don’t like to talk too much about it – I’d rather it too be invisible and not deal with it – but even I can’t hide the fact that it’s real. So, if everyone out there with an invisible illness spoke up and said something to bring light to the challenges they face on an hour by hour basis, then they won’t feel so alone. Not everyone will understand and be there for you. But you don’t need everyone. You just need those closest to you to know and understand.
30. The fact that you read this list makes me feel:
Wow. Thank you so much.
Please repost this or your own 30!
:)
Sunday, August 12, 2012
3 Cups of Coffee
God Bless my Mother.
The other day she listened intently as I complained how difficult this all is. Like I'm just watching my life pass me by as I sit with my legs up so I can breathe a little better.
And I see her wheels turning.
Thinking of a way to help her daughter battle this up hill climb.
See her open her mouth, her eyes light up with some inner wisdom. And I silence myself so I can absorb it. Hear it. Learn it.
And she says, in all her glory, "You know, Lia. I bet all your problems would be solved if you drank 3 cups of coffee a day. You know they say coffee is good for you."
Oh, mom. Mom.
Thanks for the laugh...
The other day she listened intently as I complained how difficult this all is. Like I'm just watching my life pass me by as I sit with my legs up so I can breathe a little better.
And I see her wheels turning.
Thinking of a way to help her daughter battle this up hill climb.
See her open her mouth, her eyes light up with some inner wisdom. And I silence myself so I can absorb it. Hear it. Learn it.
And she says, in all her glory, "You know, Lia. I bet all your problems would be solved if you drank 3 cups of coffee a day. You know they say coffee is good for you."
Oh, mom. Mom.
Thanks for the laugh...
Wednesday, January 11, 2012
Fingers Crossed...When "Everything is Fine" isn't the Answer You Need...
Today - literally today, as in 12 hours from now - I'm going in for an upper endoscopy. I really haven't told anyone about it and I'm sure no one reads this blog (that personally know me). I don't know why...no scratch that. I do know why I haven't told anyone about the procedure. Because everything I've had done up to date (to figure this POTS crap out) has come back with the same answer:Everything is fine.
All the blood work and tests and bla bla bla...everything has come back as "Lia is in PERFECT health"... Yeah. Okay. Great. Thanks. Perfect health sure feels perfect when you can't walk up a flight of stairs without having to take a break to breathe. Perfect health feels perfect when you are so dehydrated because your body can't retain salt that you can't think straight, breathe, stand up, digest food, or drink even a glass of wine without feeling even worse. Perfect health feels perfect when you can't eat ANYTHING without loosing your breath and feeling like there are rocks in your chest (hence the procedure today).
Everything is fine.
And I like to hear such words. Trust me. I don't want ANYTHING to be wrong with me. But...But...I just can't help but know that there is. That someone, everyone, is missing a huge problem. And if just one person, one doctor, anyone, can find it...they can fix it. And I can stop having to live like this. Then for once, yes...everything will be fine.
So, fingers crossed that something will happen soon. I'm, as I told my dear hubby yesterday, sick of this. I'm so utterly BORED of being sick. Of not being able to live up to my potential. Of being handicap. I HATE IT. HATE. Strong words toward something so obscure no one can seem to find it. That one it. Whatever that it may be. "IT" being what's wrong with me.
So, fingers crossed that someone finds it. So IT can go away. I'm tired of IT. I hate IT. Go away IT. We don't need you here anymore...
I don't want anything huge to be IT, but I want IT to be found, and soon. I know this is just not something that one should ever say out loud (hence I'm typing it...) but I feel like my time is running out. And I have so much life left to live! I have children. I have a husband. I have love to love. Words to write. Songs to sing. Hikes to hike. Beaches and mountains and streams and skies. Friends. Family. Beauty. All of it. I don't want to loose anymore of me, but I surely don't want to loose out on life.
So...fingers crossed...
Saturday, March 5, 2011
Venting is Good for the Soul... Complain Away!
Wow. I don't know about you, but DAMN that felt good.
To just get it out - vent - and complain the shit out of what I need to, want to complain about - this stupid POTS crap - and NOT have to add a SMILE at the end.
Happens every time. I could be talking to a friend, family member, even my doctor for crying out loud, and I feel the need to be like, "hey, it's okay. I'm not really feeling that bad. I just needed to complain and now I'll smile to make you (whomever I'm talking to) feel better so I don't leave you feeling the way I'm feeling..."
Why do we feel the need to do that?!?!?!?!??!?!? Totally kills the phew! Thank God I got that off my chest feeling you get from venting when you need to. Where did this pretend everything is fine and it will be mentality come from? Sometimes, believe it or not. Like it or not. Sometimes, LIFE SUCKS. Life hurts. Life kills. Believe it or not, it does!
And no, I'm not apologizing for being blunt. When ever did being blunt get such a bad rap? I say, find that person, that blog, that journal, that counselor, that you can be frank with without feeling the need to add a sad apologetic smile at the end and USE IT! VENT the SHIT out of what you need to vent about.
Cry your eyes out! Scream at the top of your lungs! Use cliches up the wazoo!
And then be done with it. Complain until your heart's content!!
And then fly away with the breeze because you're now weightless. You no longer have anything tying you down. Weighing you down.
There's nothing to be gained from saying your sorry about complaining, venting, about how unsatisfied you are that life hasn't panned out the way you wanted it to. You only get one shot at this, dammit. My soul might have been recycled from past lives and will be after I go, but I don't recall any of them. This is it. THIS is my life. And I'm pissed.
Pissed OFF!
I loved my life. I LIKED my life. Now I have this shitty POTS crap that I don't know if I'll ever be rid of until I'm rid of...and that thought right there is enough to make me want to curl up and cry. But I won't. I'll get mad instead. And that helps. Get mad, do something about it, and maybe, just maybe, I'll figure out a way to get this shit taken care of. How to fix/cure/get rid of POTS.
Because, dammit. I don't want this shit anymore. I've got plans. I've got things I want to do. And I'm done with this crap being in the way.
Two years.
I've got a two year plan. Two years to fix this shit, or I'm on to plan B. And I am not going to apologize for it either. THIS was not part of my plan. I was going to live free and clear and happy and healthy well into my 90's. I don't do drugs, don't smoke, don't drink heavily all day long. I eat right. Exercise. I may have not had myself at the top of the 'take care of' list (or anywhere near the top) for a while, but WTF! I put everyone else above me and THIS is what I get?!?!? Bullshit...
More on all of that later....
For right now, I'm feeling weightless from good ol' venting. It's good to get it all out, and no, you should never feel you have to be sorry for it. God made tears for a reason. God made anger for a reason. I will complain until the end. I will not smile and just lie down and give into this junk.
I sure as hell won't be that relative everyone says at her funeral, "oh, the dear. she was sick for so long, but never complained."
Are you fucking crazy?! Why the fuck not?! Did she not LOVE her LIFE?!
More on that later...
I'm mad. Gonna use it. Or die trying.
No smiles attached.
To just get it out - vent - and complain the shit out of what I need to, want to complain about - this stupid POTS crap - and NOT have to add a SMILE at the end.
Happens every time. I could be talking to a friend, family member, even my doctor for crying out loud, and I feel the need to be like, "hey, it's okay. I'm not really feeling that bad. I just needed to complain and now I'll smile to make you (whomever I'm talking to) feel better so I don't leave you feeling the way I'm feeling..."
Why do we feel the need to do that?!?!?!?!??!?!? Totally kills the phew! Thank God I got that off my chest feeling you get from venting when you need to. Where did this pretend everything is fine and it will be mentality come from? Sometimes, believe it or not. Like it or not. Sometimes, LIFE SUCKS. Life hurts. Life kills. Believe it or not, it does!
And no, I'm not apologizing for being blunt. When ever did being blunt get such a bad rap? I say, find that person, that blog, that journal, that counselor, that you can be frank with without feeling the need to add a sad apologetic smile at the end and USE IT! VENT the SHIT out of what you need to vent about.
Cry your eyes out! Scream at the top of your lungs! Use cliches up the wazoo!
And then be done with it. Complain until your heart's content!!
And then fly away with the breeze because you're now weightless. You no longer have anything tying you down. Weighing you down.
There's nothing to be gained from saying your sorry about complaining, venting, about how unsatisfied you are that life hasn't panned out the way you wanted it to. You only get one shot at this, dammit. My soul might have been recycled from past lives and will be after I go, but I don't recall any of them. This is it. THIS is my life. And I'm pissed.
Pissed OFF!
I loved my life. I LIKED my life. Now I have this shitty POTS crap that I don't know if I'll ever be rid of until I'm rid of...and that thought right there is enough to make me want to curl up and cry. But I won't. I'll get mad instead. And that helps. Get mad, do something about it, and maybe, just maybe, I'll figure out a way to get this shit taken care of. How to fix/cure/get rid of POTS.
Because, dammit. I don't want this shit anymore. I've got plans. I've got things I want to do. And I'm done with this crap being in the way.
Two years.
I've got a two year plan. Two years to fix this shit, or I'm on to plan B. And I am not going to apologize for it either. THIS was not part of my plan. I was going to live free and clear and happy and healthy well into my 90's. I don't do drugs, don't smoke, don't drink heavily all day long. I eat right. Exercise. I may have not had myself at the top of the 'take care of' list (or anywhere near the top) for a while, but WTF! I put everyone else above me and THIS is what I get?!?!? Bullshit...
More on all of that later....
For right now, I'm feeling weightless from good ol' venting. It's good to get it all out, and no, you should never feel you have to be sorry for it. God made tears for a reason. God made anger for a reason. I will complain until the end. I will not smile and just lie down and give into this junk.
I sure as hell won't be that relative everyone says at her funeral, "oh, the dear. she was sick for so long, but never complained."
Are you fucking crazy?! Why the fuck not?! Did she not LOVE her LIFE?!
More on that later...
I'm mad. Gonna use it. Or die trying.
No smiles attached.
Bad POTS day, Good POTS day...
That's how the story goes. How my life is going.
One day is good, the next thirty, bad. And just when I thought I had it, had figured out the pattern of it all - good weather day, good POTS day, yeah! - a great weather day comes along and I can't catch my breath to save my life.
All. Day. Long.
Sucks. And here I was going to blog about the ups and downs (ha, who am I kidding. Just the downs) of having POTS, but the thing is: I can only seem to get on here on a good POTS day...and when will the next one be, I don't know.
What's a good/bad POTS day look like? Oye, do you really want to know?...
A Good POTS day looks like this:
I wake up and my heart rate is normal. I'm not soaked from sweating all night long, my head isn't foggy, I can think straight and when I get up, out of bed, I'm not dizzy, light headed, feel like I'm about pass out. I still take my beta blocker, still drink two glasses of water with 1/2 teaspoon salt before doing anything else (because I know this isn't going to last, this good feeling) and go about my day.
On a good POTS day, I can breathe. I can walk up the stairs without it feeling like I've just run a marathon. I can pick up my kids and give them kisses without having to catch my breath first. I can kiss my husband without having to catch my breath first. I can go to the mailbox or walk to the bus stop and not feel like I have to get inside ASAP and lay down for the next half hour because I've just taxed the shit out of myself. I can go out and do things and not have to end my day abruptly to go home, lay down and wonder if this is it. This is how I'm going to feel for the rest of my life.
What does a bad POTS day look like?...
I'll leave that for a bad POTS day. I don't want to think about it now. I'm having a 1/2, 1/2 day today which, in essence, is a good POTS day. Anything outside of a full on bad POTS day is a good day.
So, I'm just going to take a shower, spend some time with my kids, and possibly go out later today to use that gift card I've been itchin' to use. Want to get some new running pants and shirt since I AM going to get back into it. I am. I have to. Otherwise... I'll blog about that another time. I'm not thinking about the whole heart/exercise/POTS eradication thing right now.
Right now, I'm taking a shower. Vent. Shower. Move on.
One thing at a time.
One day is good, the next thirty, bad. And just when I thought I had it, had figured out the pattern of it all - good weather day, good POTS day, yeah! - a great weather day comes along and I can't catch my breath to save my life.
All. Day. Long.
Sucks. And here I was going to blog about the ups and downs (ha, who am I kidding. Just the downs) of having POTS, but the thing is: I can only seem to get on here on a good POTS day...and when will the next one be, I don't know.
What's a good/bad POTS day look like? Oye, do you really want to know?...
A Good POTS day looks like this:
I wake up and my heart rate is normal. I'm not soaked from sweating all night long, my head isn't foggy, I can think straight and when I get up, out of bed, I'm not dizzy, light headed, feel like I'm about pass out. I still take my beta blocker, still drink two glasses of water with 1/2 teaspoon salt before doing anything else (because I know this isn't going to last, this good feeling) and go about my day.
On a good POTS day, I can breathe. I can walk up the stairs without it feeling like I've just run a marathon. I can pick up my kids and give them kisses without having to catch my breath first. I can kiss my husband without having to catch my breath first. I can go to the mailbox or walk to the bus stop and not feel like I have to get inside ASAP and lay down for the next half hour because I've just taxed the shit out of myself. I can go out and do things and not have to end my day abruptly to go home, lay down and wonder if this is it. This is how I'm going to feel for the rest of my life.
What does a bad POTS day look like?...
I'll leave that for a bad POTS day. I don't want to think about it now. I'm having a 1/2, 1/2 day today which, in essence, is a good POTS day. Anything outside of a full on bad POTS day is a good day.
So, I'm just going to take a shower, spend some time with my kids, and possibly go out later today to use that gift card I've been itchin' to use. Want to get some new running pants and shirt since I AM going to get back into it. I am. I have to. Otherwise... I'll blog about that another time. I'm not thinking about the whole heart/exercise/POTS eradication thing right now.
Right now, I'm taking a shower. Vent. Shower. Move on.
One thing at a time.
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