facebook status.

I posted this on the Photographing POTS Facebook page but also wanted to put it here:

I’m soooo behind on posting! As always, life is busy and hectic and I am doing my best to stay on top of it all. This, of course, means having to prioritize and sometimes though I have a lot to say, I just don’t have enough power to organize my thoughts enough to blog or write back to messages. I will get there though, I always do. I just didn’t want anyone to think I was ignoring them. I’m just really tired a lot of days and my brain seems to take the brunt of it! It’s is the trade off of trying to live as fully as I can, I think. I’m sure most of you “get it” which is both fortunate and unfortunate.

I do update my Instagram a lot if any of you are on there. Not really POTS related except it does show glimpses into my life. @kdspor

I will add a disclaimer: do not think because I look so busy that you should be too. We are all different even if we do relate. ❤️

for emergency use only.

A necklace for those days when I run out of spoons.

Thankfully that day isn’t today.

Wondering what I am talking about? Look up The Spoon Theory.

P.S. New update coming soon regarding my trip to Vanderbilt last week. Learned a lot!

showers, pots, and hives (oh my).

This is my circulation fun after a shower. Blue, purple, and red and of course, some itchy hives. These photos definitely do not fully portray how bad it is in person. But I’m not swelling as much as I often do, so I guess there’s that? And no, I did not have the shower on too hot.  Also, please excuse the mess in the background.

The back of my right heel still looks bruised (not as bad though). I’m still having all over circulation problems like yesterday.. at least more than usual. And I have been REALLY out of it today. Forgetting words, stumbling on phrases, feeling very spacey and oh so tired. The heart has been racing too but I’m still here 🙂

odds and ends.

Knitting makes me break out into hives and flushing, apparently. No, not really. That’s just what I happened to be doing when my body decided to throw a fit. Real relaxing, eh? Pay no mind to my grumpy face below. Flushing episodes really are the worst.. and they don’t just stick to your facial area. The symptoms also take over your entire being and make you feel incredibly fatigued and rundown. “Beat up” may be the better term. This photo doesn’t even do the visual symptoms any justice.

…And then there was today. Today was definitely a symptomatic day. One of those where you can feel your heart pounding away like crazy. Dizzy spells that made you question whether or not you might actually pass out. horrible circulation. purple and red. blanched to the touch. freezing. feeling like you’re drunk because you’re so out of it and stumbling over your words. no but really. feeling like you’re drunk without an ounce of alcohol. I also have had issues with taking deep breaths today (I’ve had post nasal drip and a cough for over a week now – thanks winter!). I just feel really out of breath and somewhat asthmatic. So I knew I needed a shower to at least warm up and try to clear up my chest. Sounds backwards for a person with POTS but cold is awful to me and I would rather deal with the issues from heat and get to lay down after the shower than feel like I can’t get warm and can’t breathe while feeling all the other things I did today. Well, a weird thing happened. Instead of just my usual generalized discoloration and swelling… When I looked down, I noticed that there was a concentration of color in my right heel/back of foot. I know it wasnt there before. It doesn’t hurt. And it’s still here. I haven’t injured myself… I know that much. It does look bruise-like but it makes ZERO sense to me. I’m assuming it has something to do with my circulation?

Mentally, I’m feeling a bit better though. Sometimes this is all very hard to deal with and accept. I really don’t think i will ever actually accept it. I just can’t. My genetics, personality and upbringing… they say no no no! They scream it. Nevermind that my genetics also had it’s own hand in me having this BS in the first place. I don’t mind my lack of acceptance most days because it keeps me going. I am still crossing things off my dreams list… Maybe not like I’d want to but I’m still doing it. And then sometimes the fatigue rolls over me like a very dense fog. I can’t see anything else and I feel like I am trapped in the darkness. But I always find my way back to the light.

Thank you everyone who has reached out to me. It means more than you know.

the chicken or the egg.

I’m depressed.

There I said it.

And by depressed, I don’t mean I’m just a little down or I’m bummed out. No, I’m pretty sure on some scale, I have depression going on.

But I do know why.

POTS is all too often brushed under the rug as anxiety and the symptoms that come along with it are often mistaken for depression – as a cause. I’ve heard horror stories and that makes me grateful for my doctors knowing to actually dig further and test me instead of just assuming.

In general, I don’t really believe I have ever had true depression. I enjoy things. I’ve dealt with some terrible things that has made me very sad. It has made me very angry. I’ve learned some unhealthy coping mechanisms and thought patterns. But true depression? No.

Winters are the worst but in general, I’m having less and less energy. I feel so rundown, burnt out and tired all of the time. I’m so over the flushing episodes. I’m over feeling like I am going to pass out. I’m over feeling nauseous and having headaches… all. of. the. time. I have hit my breaking point, I think. I’m not depressed for no reason – I am depressed because I have so much to do – so much I need to do and so much I want to do. And I can’t. I just can’t.

It is making me angry. It is making me sad. But it is also making me plain depressed. I don’t even feel like trying some days because the mere thought exhausts me. I feel lazy. I feel useless. And I feel stuck.

I was clearly getting worse prior to this depression but I know this depression isn’t helping me. Could I be having better days if I wasn’t letting it all get the best of me? I don’t know. I just feel like I’m always running on empty.

I’m currently LISTENING to my daughter play outside in the snow. She is giggling and laughing and running around. I remember when I loved snow days, spending hours at a time outside with my next door neighbor and best friend. We would be positively numb by the time we came back inside. It hurts that I don’t feel like I can go outside and play with my daughter. They say hot weather is the worst for POTS but for me, it’s always been the cold. It is painful. My circulation is so much worse. And the flushing when I come back inside…more so if it triggers a full on episode. It makes me want to cry and it’s not even happening at this moment. It makes me mad because there is so much of me that wants to desperately believe that I’m just being a baby and if I just pushed myself, I would be fine.

But I’m not fine. I’m not fine at all.

I’m going to be 30 in a couple of months and often, I feel further from my goals than I did at 20 – which is when I had Scarlett. I want more kids. Will I be able to keep up? I miss photography. I miss doing things! I miss not worrying so much about sleep and rest and being well. I used to crash a lot but not like I do now. Now it’s gone too far.

I took up a knitting class to do with my best friend on Thursday nights and I don’t even feel like I can keep up with that. My hands lock up while doing it too which I know is part, I have really long skinny fingers that get in the way and I need to get used to it. But it’s also painful and I know my circulation is screwed up. Why?!

I’m depressed because i desperately want the energy to cook myself healthier meals. I want to grocery shop like I used to when I was at home with Scarlett. I want to work out (i.e. recumbent bike) and I am SO TIRED of not sweating and then thinking I am fine, only to crash and burn again.

I’m over it.

I AM SO DAMN OVER IT!

I find myself expecting miracles. Holding onto the hope of expectations is ridiculous, by the way. And HEARTBREAKING. I find myself expecting those around me to perform miracles and get me to do things I probably can’t do. Or even the things my brain won’t organize itself enough to make happen. I find myself jealous and angry. At myself. Towards others. And again, I am ever so depressed.

I know I have Vanderbilt coming up but will it REALLY make a difference? Yes, I am still going through with it. But I see people who are actively treating their POTS and I got to tell you, some of them seem worse off than me! I also have so many other health things to follow up with and it would just be really nice if I could keep on top of it all and know what the heck I’m doing. It would also feel nice if I didn’t have such hangups about following up on my health… thanks to some people for giving me that complex! (sorry, but it’s true!)

I’m just really frustrated. I feel like I am at all the wrong places in my life. We’re trying to buy a house and things have been falling apart. So we’re still in a noisy apartment that doesn’t feel like home. I’m in a job that burns me out all on it’s own and I KNOW sitting at that desk all day is NOT the best thing for my health. I’m incredibly disorganized and don’t feel like I will ever be able to figure out how to fix it because I am too damn exhausted. I’m not doing photography like I should. I’m not involved with Scarlett’s school like I’d like to be. I have not seen my friends like I used to (I will say that I have gotten to spend some more time with family though and when I get to, that has been helping in a lot of ways. I need to make that a bigger priority). I feel like a lump on a log most of the time. I feel like I’m 30 going on 80. I feel like this bright mind trapped inside a body that isn’t working for me. I feel like “why even get up if this is how I am going to feel all the time?”

How is it fair? Life’s not fair and lord knows there are people in this world who have it a lot worse than ANY of us. But in my world, I am sad. I am angry. I am depressed.

I want so much more than this. And I have no clue how to make that happen anymore. Without my health, what more can I give? What more can I take? I have no idea what direction to go in anymore.

big news (and an apology)

I’m behind on the blog and writing back (again). I know I keep apologizing but I do believe at this point, most of you get it. You know what it’s like to live with what I have and how sometimes, it takes all you have to focus on the everyday, let alone side projects. I hope to be updating and responding soon!

As for the big news… I’m going to Vanderbilt! I still can’t believe it even as I type it… I’ve only been talking about going since this all began. It all started when Dysautonomia International posted on their Facebook page that Vanderbilt was recruiting for a study titled Dietary Salt in Postural Tachycardia Syndrome. It turns out that I qualify for at least a screening study of sorts, which requires a 3-4 day hospital stay. Vanderbilt wanted to know when I could come and so now I have flights booked March 9th through the 12th! Never thought there would come a day where I am excited to be staying at a hospital or being a patient guinea pig but let’s face it… if we’re going to have something like POTS, we want to know all we can to get or at least FEEL better. This is a big opportunity for me and my condition. It is also is an opportunity to add my case into the research for autonomic disorders – and hope that it helps pave the way to more answers for all.

Since my official diagnosis of Postural Orthostatic Tachycardia Syndrome, my doctors and I have sort of been in the dark. University of Penn wouldn’t run the tests my doctors asked of them (or at least the Penn doctor who I saw wouldn’t send me for those tests for whatever reason. Ego? Yep, I’m going to go with ego issues.). Treatment tried so far has not helped and in fact, likely made several things worse. So I’ve sort of just been coasting (and crashing). Keeping my head down as much as possible and getting through my day to day the best I can. I’ve been living with many of the symptoms since as far as I can remember so I do have learned “coping mechanisms.” Totally sucks but you do what you gotta do to get by. Or at least I do… too much stubbornness to do anything else!

At minimum, I will be at Vanderbilt (their Clinical Research Center) getting tests done that will hopefully characterize my POTS specifically. They will use my information towards other studies and if I fit the requirements, I will have to come back down for their big Dietary Salt in Postural Tachycardia Syndrome study. I’m pretty sure a lot of this will be torture (doing the tilt table test again is enough to make me shudder) but it’s for the greater good and that’s all I can focus on and smile about.

It’s been killing me not knowing what my body is doing (or not doing). I’m a research queen and I never understand the people who are just perfectly content taking what their doctor tells them at face value. I also never understand the people who don’t know how to properly research and go off the deep end – absolutely panicking over the misinformation they found. If you’re going to research, you have to know your body. You have to know legitimate sources. You have to be able to think outside of the box and understand what you are reading or looking at. You have to research your research. And then research some more. I want to know every single little thing about what’s going on because I find it to be so vitally important to the bigger picture. It’s not because I’m scared or anxious about something awful happening. It’s because I’m forever curious and I love to learn. It’s because I want to know why so that I can try and make it better. If not for me, perhaps my children and grandchildren.

But anyway. Here I am. I haven’t seen my regular doctors (at least most of them) in the way I should have been in awhile so I guess I better update them. I haven’t seen the point of going in to see them when all they will do is tell me what I already know or send me out for more tests that no one knows what to do with beyond performing them. What do the results mean? They don’t know. Not about this. And that’s why I have been so desperate to see doctors who specialize in what I have. It’s why my doctors have been so desperate for the same.

So here’s to finding more answers and hopefully new ideas! It’s kind of scary that I am going down there all by myself (have to) but one of the good things is that I have a very good friend living down there that will be able to visit me at the hospital during my stay. I haven’t seen her in almost 8 years so I’m pretty excited about it.

I’m going to try to document as I’m allowed during my stay. I was hoping for at least Sean to be going down with me and I was going to teach him how to use my film camera to document when I couldn’t (nerd alert!) but that isn’t in the cards and that’s okay.

random facts about my POTS/medical experience.

1.) I’ve dealt with symptoms on and off my whole life (or at least at varying degrees) but it’s gotten significantly worse since 2011. I believe it was a combination of things (and certainly not limited to the following):

• Going back to work full-time. I hate admitting this one because it sounds like an excuse or like I am lazy and don’t want to work when that couldn’t be further from the truth. I was very excited to go back to work after being home for so long with my daughter. I liked the change of pace too and feeling like I was getting financially secure on my own for both myself and Scarlett. But I would be doing myself a disservice by ignoring the fact that the commute and loss of time and stress this job has brought in my life had an impact on my physical health. I also think the fact that this job is one where I sit at a desk all day has added it’s problems to my health. Things were going wrong prior to me working again but the details of when I work, how I work, etc. definitely had it’s hand it pushing things over the edge.  I have a theory that a steady sitting desk job is the worst thing someone with dysautonomia/POTS can do to themselves. “Burnt Out” is a good way to describe how I have felt.
• Day two of the new job back in March of 2011 – I got hit with a nasty upper respiratory infection. It was so bad that my boss took one look at me and didn’t just send me home but told me to get to the doctors – it required a breathing treatment and I was out for a few days (despite my protests). I did not get rid of this thing until over two months later. I know this because I still had it when I went to Disney World that year in the beginning of May which is also when I truly noticed significant swelling: https://photographingpots.wordpress.com/2014/04/17/the-swelling-timeline/ My energy levels were essentially zapped, more than they had ever been. I also kept getting sick, upper respiratory-wise and stomach bug- wise too. It was like my immune system bottomed out.
• Medication changes. I went from being on the pill to not (especially due to the fact that my blood pressure gets really high). Having the paragard IUD (non-hormonal) in to not. Trying a different pill which made me extremely depressed. I went on (and off) Plaquenil & Salagen (see #2) and Norvasc (for possible Raynaud’s Syndrome). The medications I feel made the worst impact on me are the following: After my POTS diagnosis, I was put on a beta blocker: Nadolol and THREE different anti-histamines: Allegra, Zantac, Hydroxyzine (due to hives and flushing episodes which was ruled out to not be something like Rosacea). My flushing episodes got worse in certain ways (beta blocker was to blame) and it didn’t bring down my heart rate or blood pressure, it just made the swings from low to high, high to low more significant. I felt like zombie and brain fog was not just a frustrating symptom anymore – it was a constant. Swelling was worse than ever and I gained weight. I felt horrible. Zantac is technically for heartburn (which I never had except when I was pregnant with Scarlett and after that, I would rarely get it on a much smaller scale during a bad period month) but it’s also an “H2 antihistamine” medication (the others are “H1”). Apparently if you take a medicine for heartburn when you don’t have heartburn at all – it’s going to make you have it. At least that’s how it was for me. I’ve been off of these for quite some time now and still don’t feel like I did before I was on it. That isn’t a good thing but at least I don’t feel as terrible as I did on them.

2.) Because of my family history, I was sent to a rheumatologist first. My mom has Sjogren’s and both my primary and the rheumy would have put money down that I had it too. My mom’s is seronegative meaning it does not show up in blood work but she meets the “gold standard” of diagnosis by having a positive lip biopsy. I met the diagnostic criteria with everything (besides the blood work) except I didn’t have positive lip biopsy. The rheumy still felt that I was likely in the beginning stages and put me on medications as a result (Plaquenil & Salagen) and wanted me to see my mom’s specialist (who is one of the leading doctors in the country for Sjogren’s). Due to personal circumstances, not knowing what medication was affecting me, and my ongoing issue with time, issues about doctors, so on and so forth – I went off of plaquenil and I never went to the appointment. Stupid on my part, I know. This is the exact reason why I feel it’s important for people to have personal healthcare advocates that go to appointments and help keep it all organized but that’s another subject for another time.

3.) The thought of getting a shower or doing my hair and things of that nature sometimes makes me want to cry. If every day is like running a marathon for a POTS patient, a single shower must be about 5 or more marathons rolled into one. This explains a lot of it: https://photographingpots.wordpress.com/2013/03/29/the-strenuous-task-of-showering/ Doing my hair (which is super thick and takes forever to dry) takes a lot of effort and time. If I have to do it after a shower – it’s even worse. But having my hands and arms above my head like that for that amount of time regardless, especially if I need to stand while doing it… just the thought of that makes me feel panic over how rundown I will feel afterwards. Do you know how ridiculous I feel for even thinking like that? It seems so overdramatic. “Seems” being the keyword there… I know the reality and so do many of you. I have posted photos of my legs after a shower but it doesn’t do it any justice. They look like a collage of purple and red. It looks like I have gigantic nasty bruises all over the place. They are swollen. Why? Because all my blood pooled down there and my heart is now furiously trying to pump it all back up and is failing. Do I even need to explain to anyone why this would make my body downright exhausted? With things like the hair (and hey, sometimes even showering), it feels like I have to decide between doing it and having energy for other things.

4.) You would think I have weak legs. They give out on me sometimes and by that I mean, I’ll take a step and they’ll buckle. But to be quite honest, my legs are and have always been the strongest part about me. I couldn’t hold someone in place very well with my hands and arms.. however, if I get a grip on them with my legs – they’re going to have to put up a good fight to get out of the hold. For some reason though, my legs aren’t strong enough to pump blood and fluids back up into my system as they should. Perhaps this is because of my abdomen/core which has always been fairly weak. Perhaps it’s because my legs are very long like my arms and there are parts of me that might be a little too flexible (including my veins and arteries). I don’t know.

5.) There are times I really wonder about my mental state. While I am aware of certain “issues” I have (like anyone else would), I have to go down a checklist before I could ever actually believe I’m having a true mental breakdown. I can tell you that so far, I’m pretty sure I haven’t had one. Here’s the checklist:

1. Am I flushing? Do I have hives?
2. Is my heart racing?
3. Do I feel dizzy?
4. What do my hands/feet/legs look like? Are they swollen/red/purple?
5. How long have I been upright/standing?
6. How do I feel when I lay down?
7. When is the last time I ate something? (or drank something for that matter?)
8. What was it that I ate?
9. Do I have my period or when is it due?

I’d have to say 7 and 8 are probably the most important questions, followed by 6 and 9. Eating… oh my goodness. There are a lot of articles out right now that argue against eating small, frequent meals throughout the day. They say it’s a myth and not something people need to do. Well guess what? Unless I eat like that, my body and mind don’t react too kindly. I am a person where it is absolutely necessary to eat like that. And as for skipping meals? Forget about it. If I haven’t eaten as I need to, I can become so depressed and hopeless – there have been times I thought I might need some serious psychiatric help (no exaggeration). Give me some food – even if it’s a cupcake. I guarantee that I am a COMPLETELY different person within minutes of finishing it, if not before. I know I am not making this up because people have seen it and in the moment of my despair, I will argue that I am not hungry, that’s not what is wrong, so on and so forth. I eat and it’s like my brain can function like normal again. I don’t know how else to describe it. Of course, I do need to be careful about what I pick to eat because sometimes in these moments certain foods can make me have a severe flushing episode with hives (i.e. tomatoes is usually the biggest culprit). If I do get it severe enough, I have to take it easy. When it comes to 6 – if I feel overly anxious or upset and I’ve been upright or standing (especially in one place) for any length of time, chances are if I just lay down, I instantly feel better. It simply means that blood was not getting back up to my brain as it should (perhaps even more so than normal) and laying down especially with my legs up helps me feel “normal” within seconds. I can physically see laying down may be necessary a lot of the time just by looking at the color and size of my hands/feet/legs. As for 9, like I posted yesterday, being female and having a menstrual cycle isn’t always the best; however, some months are better than others. This month, I felt horrible and I was emotional/crying over EVERYTHING. There are things that don’t help like constant weather/temperature fluctuations but my body just goes into overdrive with hormones at times. If my period isn’t on time, it’s even worse. Two months ago, I was over 2 weeks late. Last month and this month, I am a week early. When it gets as bad as it does this month though, I am useless because being upright makes me cry more. Everything makes me cry more because my body is not doing what it should be doing at all. Blood loss also equals pure hell. There just isn’t any other way to put it. When you have POTS, you have problems with not having enough blood volume. You get your period and hello? Not helping matters AT ALL. But if I am on the verge of getting period, chances are that’s the reason I am a hot mess and more symptomatic (even though again, I am not always).

This past weekend I think I had multiple issues which caused me to be a mess: my period, weather fluctuations and I did not eat or drink as I should have.  I knew better and even more so because I have been having increasingly bad flushing episodes all week! If I had prepared better, I do not think I would have had as bad of a reaction as I did.

6.) Speaking of the discoloration and size of my hands, feet and legs… this was a symptom that has been going on long before I had the more severe symptoms. Bad enough for friends, family and even strangers to notice and point it out. I knew something was likely going on with my circulation but as always, I brushed it off as being weird… which is totally normal for me 😉

7.) I have a theory that many POTS patients need to be more active. Yes, you read that right. The problem though is HOW we are active. I don’t believe going to the gym once a day or several times a week is the answer either. People with POTS need to rest more but the catch is that too much rest can set us back. Having a desk job every day is bad for ANYBODY. There are enough studies out at this point that I can say that. So can we please take a minute to imagine what this would do to someone with POTS? Your blood flow is definitely not happening as it should. Sometimes I wish my computer was connected to a recumbent bike so I could build up some strength and stamina that way. The symptoms and issues related to POTS I feel by the end of my work day and on my way home is completely different from the symptoms and issues I feel from having a fairly “active” day where we are busy doing things and constantly on the move (Standing still in one spot for too long = no bueno. Sitting for too long = no bueno. Laying for too long = no bueno). And I have also found that as long as I am not doing one of those things (standing, sitting, laying) for too much at a time, I am better off. Why? Perhaps because my body then has the opportunity to pump blood differently and therefore, the blood doesn’t pool due to being in the same position for way too long. I get up at work to walk to a convenience store near the office or to get water from our cooler, so on and so forth. That is not enough and not what I mean. At the end of my work day during the week, I am pretty much useless (unless I really push myself hard and I don’t mean that in a good way). But if I have a day where I am active and I am changing up what I am doing or how I am doing it, by the end I am beat – but I don’t feel like I am burnt completely out. That is the difference. Issue here is that’s not the way life necessarily works. In our society, we are supposed to adapt to whatever needs to get done and how it needs to get done. Unfortunately for people with POTS and other diseases too, it’s not always that simple. And some days, this whole #7 that I just wrote doesn’t apply at all – and you can’t do much of anything. Period. For now, that’s just the way it is.

8.) The guilt I feel sometimes consumes me. There’s a lot of guilt when you don’t feel well. You feel like you need to suck it up. You feel like there must be something wrong with you as a person because you just can’t figure out how to do better. You feel bad for the people closest to you no matter what they say. You wonder “why me?” and other times you tell yourself that this can’t be real and you’re just crazy and a big baby. Sometimes you’re going to be able to “do it all” and there will be other times, you can’t even do the simplest of tasks. Sometimes we’re all going to feel these things. But letting it consume you is the last thing you need and it’s the last thing the people closest to you needs. Which is why it’s really important for someone like me to keep on top of the checklist in #5.

9.) To figure out fully what is going on with me would be a full time job. That’s the truth. I already have a full time job on top of being a mother to a wonderful 8-year-old. Taking a leave of absence would probably make a lot of sense for me – if I could only guarantee to get into the places I needed to get into in the time that I would be taking off. I also know what happens when people take leaves of absence for work. I know how some companies can be and they will monitor to see what you are up to. So if I do something I enjoy during the time I have off, it could come back to bite me in the butt even if I do need the time, energy, and sanity to focus on my health – doing things that make you happy tends to help with that. I get that other people can work and figure this stuff out and keep on top of their doctors and what tests they had done and what those results are and communicate all these things to all the doctors without anyone ever missing anything and blah blah blah. I am not one of those people and I am never going to be one of those people. Sorry. Insurance is expensive. Paying for all of these appointments and tests on top of expensive insurance premiums. And insurance is also way too expensive for me to have to fight for them to cover things they should be covering. I am somehow supposed to not feel well, work full time during hours most appointments are available, be a mom including doing appointments for my daughter (despite working hours when appointments are available for her), and do everything else there is in life. Yeah. Again. Totally get that other people do it all of the time just fine with no complaints. I wish I were more like them, trust me. I’ve been trying for a long time now and what I end up with is more stress, more frustration, and more being back at square one. I’m over it. I wish for better, I wish for more. Not in material things but in things like quality time and peace and sanity. I wish for a simple life. Too bad I’m not a simple person.

10.) I’m hot when I shouldn’t be. I’m cold when I shouldn’t be. I sweat when I shouldn’t. And I don’t sweat when I should. And sometimes none of what I just said applies and so much more happens but I would be here all day talking about it and contradicting myself while doing so. Things are constantly changing and it’s confusing in a major way for not only me but those around me as well (including doctors) but that seems to be the case with anything that is malfunctioning in the autonomic nervous system. Other systems in your body try to compensate – sometimes they succeed and sometimes they don’t. Sometimes that all causes more issues. The very things we all take for granted (like our bodies doing what they need to do without a second thought from us), is a struggle for someone like me. That’s my reality for now and I hope that it won’t always be.

being female with POTS.

If I were to have my own personal versions of hell, getting my period would be one of them.

This weekend was supposed to be relaxing. I spent most of it in bed. Which was fine.. I edited photos. I read. But I spent a lot of this weekend hysterically crying for no reason. Feeling dizzy. Stomach bothering me. Achey.

I was a week out from my period. But as my fiancé predicted from all the crying and yes, irrationality… It came early. Today.

POTS is complicated all on its own. Add in the complication of menstrual cycles and added hormones… And then add me. What do you have? A big hot mess.

I have a nasty headache on top of it all but that may be from needing to boost my electrolytes.

This all makes me miss out on things which of course, makes me cry more. And I also have an extremely patient fiance who I will forever be grateful for. He had to yell at me to stay at home in bed (and eat) today. I feel guilty he has to deal with this.

Fortunately, I don’t get to choose whether or not he still loves me and stays. I am so thankful that he does.

when a cold isn’t just a cold.

If you have POTS or some other form of dysautonomia or hell, at this point we can say some form of autoimmune disorder (have you SEEN the recent research findings?!), you know that when you start to get sniffles, you might as well have the full on FLU because that’s how your body is going to react whether you like it or not. And as long as we are being honest, sometimes simply having allergies makes you feel that well too.

Welcome to me and the fall.

Oh, the fall. How I love thee. Until I get super sinus-y and sick and feel like I am dying over nothing.

If you have the above things I mentioned, you KNOW i am not exaggerating.

But it sure sounds like it, doesn’t it?

You have no idea how long how ridiculous I have felt over such things. As much as I love fall, it really has never been my time of the year. It has always equaled: allergies, sinus infections, bronchitis, colds, blah blah blah. I am a big baby when it comes to these things. Or am I? Society seems to think so. They think I am like men with colds, apparently. Just look at this meme (irks me to no end!).

I am totally the man in that photo – with no apologies. Even if I didn’t have POTS, I would be that man with no apologies. I don’t feel sorry for that woman who is putting down the man for being a big baby with the cold. I think that’s what is wrong with the world… stop acting like a martyr already (and spreading your germs!)… but that’s another argument for another time.

I’m like man in this photo for even a minor cold, whether I like it or not. Case in point: this weekend. My man was up and about taking care of things by the way. So this meme truly means nada to me. I couldn’t take care of much at all.. and he knew it. I knew it too but my brain was trying to override that fact. Thankfully for me, Sean AND Scarlett put a stop to my nonsense and I spent much, if not most, of this weekend in bed.

Have I mentioned how much I love people? I remember when I first started posting about my condition… someone took a look at my daily fluctuations in blood pressure and heart rate (I almost wrote BP and HR and then remember how much I hated being a “newbie” at all of this and trying to figure out everyone’s abbreviations), and was like “oh yeah! looks like anxiety!”

Dude. if you are having fluctuations like that and dealing with what I am and you think it’s just anxiety? You have a real problem on your hands. I am so thankful for knowing the difference. Not so much thankful for the EXPERIENCE of knowing the difference but hey. Life happens.

So back to this cold. I have sinus issues and allergies. It’s true. My daughter does also. In fact, she has my “cough variant” version of asthma. Sometimes we wheeze… but mostly we don’t. We just cough up a lung instead. Her heart also races but I don’t know if that’s just childhood or if it’s a precursor of what’s to come. I don’t like speculations. I like believing that she will be a-okay.

I miss out on a lot this time of year. It sucks. No other way to put it. I barely made it through my engagement session this past October. Here’s a link. https://www.facebook.com/media/set/?set=a.871408676226764&type=1&l=ab71554d00

Here’s a couple of photos from that link (credit to: Ash Imagery):

By “this time of year” i do mean through the winter. I swear the cold weather freezes up my blood flow and I am just not a normal below 30-year-old. I’m more like 80.

Sometimes i do pick up and and act like I have it together more than I actually do. As you know from previous posts, I have been accused of having “more energy” than “most people” with all the things they do. My point is I am not them and my quality of life should not be comparable. Never mind that I think that we, as a society, overdo many things… and that may be a cause of health issues as well.

I just wish for the normal amount of energy everyone else has. More so I wish for the normal amount of energy that everyone like ME has. Let me do with it as I wish.

I wish I could give people one week of what it’s like to live in my body. The desires. The struggles. The responsibilities. The desire to do what keeps me living vs what I need to do to survive. The stupid adrenaline rushes when I truly need sleep. The moments when I feel like I need to work from home or call off. The failure I feel from it. I wish you could feel the pain. I wouldn’t wish this normally but I wish for all to feel it so they can understand I don’t do what I do to be selfish. I wish they knew so they knew how much it hurts inside. So they no longer judge the inner fight. But even then, I see those that *I feel* are worse off than me, doing more than me.

How quickly i need to realize that they *aren’t me.*

Different personalities. Different bodies. Different chemistries. Different desires. Different motivations. Different diseases.

There is no comparing.

There is only me. I care more than you think I do.

Take me or leave me.

I can only fight for me. And beyond that, I fight for my daughter. I will fight for any future kids. I fight for my family. I fight for my love. That’s not me putting “bros before hoes”… that’s me knowing what needs to be prioritized. That’s me doing the best i can. Even if you don’t agree.

Even if you don’t agree that I have a cold and need to suck it up like everyone else. I am not everyone else. I am Kristen. I am me. And I have a disease that slows me down. But god damnit, it will NEVER hold me back.

search terms are fun.

I see some of the searches that people make that land them onto my blog. Some of the searches are like “um, what?!” While others makes me a little paranoid: “is it someone I know?” But mostly, I see these searches and 1) I am glad it got them to my blog. Perhaps it will shed a little more light on the subject for them. 2) It makes me want to have the direct answer to the question for them… so that’s exactly what I am going to do. I am going to go over just a few of them for now – I am sure there will be more of these posts in the future

1. Is POTS illness hard to live with?/struggling with POTS

Yes. No. Depends. Postural Orthostatic Tachycardia Syndrome, other dysautonomias, autoimmune diseases, so on and so forth are NOT one size fits all diagnoses. Actually, I think that can be said for even the more “typical” diseases and conditions in the world – including heart disease, cancer, diabetes, etc. What works for one may not work for others. There are far too many variables in life, in health, in personalities. Because everyone is different, I can really only answer for me but I can also say that I know there are people who identify with my particular situation. POTS *can* be hard to live with. Many of my symptoms, I have known since I was a child. I just had no idea some of the things I felt weren’t normal. There are periods of time where it gets worse and I often wondered “what is wrong with me?” I learned to cope and push through but that wasn’t necessarily the healthy or right thing to do. Some days are worse than others. Sometimes it’s really hard not knowing how I am going to feel on any given day or moment. Or not knowing why symptoms might flare up and which ones won’t. It’s incredibly frustrating to feel like I am just not trying hard enough when I get tired over nothing or when I am not able to keep up with things like others do. I struggle the most during work weeks. I feel like I should be A LOT more productive after a day at the office. Truth is that a majority of the time, I am the kind of tired you feel when you are coming down with the flu or worse, when you HAVE the flu. It’s hard when my daughter wants to do normal things and I can’t get myself out of bed or off the couch. It’s hard to make others understand when I barely understand myself. Is POTS hard to live with? You tell me. Look up what a POTS patient goes through and tell me how you would feel…and I will tell you that unless you actually have it and live it, you really have no idea. Seeing the overall quality of life of patients with POTS is often compared to that of patients with Congestive Heart Failure or Chronic Obstructive Pulmonary Disease (COPD), I am going to go out on a limb here and say it can be pretty rough at times.

2. pictures of blood pooling in legs/what does blood pooling look like?/blood pooling pots/what is blood pooling?/what does it mean if blood is pooling on your knees

I refer you to this post: What Does Blood Pooling Look Like Exactly?

And this one: legs, skin, weight, and the whole thing.

Blood pooling in the hands: dr. jekyll and mr. hyde hands

And because there is a possibility that this is due to blood pooling, here ya go: the swelling timeline.

Blood pooling is exactly what it says. It’s blood “pooling” or accumulating in areas of the body. Because of gravity, this mostly happens in the legs and feet. Sometimes the abdomen. Sometimes the hands and arms. Basically, your blood is not circulating back up as it should and this makes your heart work harder to get the blood pumping back up to it (hence the tachycardia).

3. POTS syndrome and weight gain

I don’t have the answers for this nonsense (yes, nonsense because I hate it!) but I do know it happens. I just don’t know exactly WHY. Some people get weight gain due to the medications they are on for POTS. Others, I am not sure what is going on. I do know mine comes and goes as it pleases. I question the term “water weight” because all i do is pee and the swelling remains. the swelling timeline and  legs, skin, weight, and the whole thing are two posts of mine that go over this.

4.  hot intolerance/cold intolerance/POTS and showering

My body is whack and I think it’s safe to say that’s true for pretty much anyone who has POTS or dysutonomia. My body often doesn’t have any idea what the temperature is. I can be cold for no reason. I can be hot for no reason. Parts of my body will be on fire and others will be ice cold (both in feeling and to the touch) – sometimes this can occur on the same exact limb, including fingers. I have more issues with feeling like I can’t get warm enough than i do about getting cool enough. Sometimes I can’t let myself exercise, be out in any sort of heat, or do much of anything because I will suddenly stop sweating, despite being perfectly hydrated. Those are times I can overheat. I’ve written about these subjects several times but here is one to start: the strenuous task of… showering?

5. pots syndrome and hives/mast cell disease/mast cell activation disorder/flushing/pots syndrome my neck and knees go red/urticaria

A lot of people have come to my blog because of my flushing episodes. So I will just refer you to some of the posts and check out some of the above!:

– not my most photogenic moments… dealing with flushing.

– hello, flushing with fatigue. we meet again.

6. flushing face adderall

I’ve been asked several times about this. I’ve also been asked whether or not Adderall (XR in my case) is the cause of my POTS or has made it worse.

In short: NO

Long answer: I’ve had these symptoms long before Adderall XR ever entered the picture. Since childhood, it’s been brought up that I could have ADHD. They tested me for it in 4th or 5th grade (I believe) and they said I didn’t but at the time, they were supposedly missing the diagnosis in the inattentive types, especially girls. Of course even back then I had the tachycardia and the fatigue so I was always tested for Epstein Barr. Always negative. Nothing further done. By the time I had my daughter at 20, and left work to be home with her at 21.. I was so worn down and out of focus and my symptoms (some of which I didn’t realize were symptoms) were really bad. This included flushing and hives. I was also having the weight fluctuations back then (seeing my old medical records when I moved back to NJ was an eyeopener to that!). It wasn’t lack of sleep – Scarlett had been sleeping through the night since she was about 2 months old! My doctor knew something was up but between insurance and my resistance (I know), she couldn’t figure out what was going on. Even back then, she did not like me on birth control (which is interesting now since I am pretty much not allowed to be on ANY hormones of any kind). That doctor really did try to help me. Because of issues both related and unrelated to my health, I was seeing a therapist and a psychiatrist. That psychiatrist is the reason I was diagnosed with adult ADHD and the reason why I was originally prescribed Adderall XR. Birth control pills (some) have had an effect on my blood pressure. Adderall XR? Zero. It also has zero effect on my heart rate. My heart rate and blood pressure are the same on or off the Adderall. In fact, before the psychiatrist put me on, she checked all of my vitals and noted my fast heart rate. I gave her the same answer I had always known: “it’s just how my body is.” So I was cleared to be put on the medication. When I started taking the it and it was in my system, I thought – “wow! they must have been right. I DO have ADHD.” Why? Because the medication did it’s job. I was able to focus more or at least think more clearly and I had more energy. Little did I know this was because the stimulant was making my blood circulate better. Blood was actually getting to my brain as it needed to!  Because of this, I was able to move more and get a better handle on things like a healthy diet. I also truly believe that while I was doing pilates during this time, I was strengthening my muscles, especially in my abdomen, and this was helping with the blood flow process. I think there are many patients out there with Dysautonomia and/or POTS whose bodies get used to medication and start to override them. So Adderall doesn’t work as well it used to on me but I can tell you I’ve been off of them for long lengths of time and have gone back on them – there is a difference. I can tell the difference when I walk my daughter to school in the morning – if I don’t take the medication before we leave, I most often have to take a rest with my legs up before I can do the drive to work. If I DO take the medication, I feel okay enough to get in the car to go right away. It doesn’t cause or worsen my POTS. No. Instead, it has been the only thing that keeps me being able to deal with this whole POTS thing and I HATE IT. I hate taking any medication whatsoever. But here is my compromise… I take it. Another thing worth noting is that when I had my tilt table test done, the doctor who performed and assessed it told me that I likely didn’t have things like ADHD (and some other things like asthma issues) but that it was a part of POTS and anything underlying instead. He kept me on Adderall as part of my POTS treatment.

Want to know what has worsened my POTS and caused significantly more flushing?? BETA BLOCKERS. And that’s what points us all in the direction that I just may have hyperadrenergic POTS and mast cell issues.

Related posts:
– bad hives day and losing my mind
– struggling through my way
– hello, flushing with fatigue. we meet again.
– understanding our bodies vs. masking our symptoms
– not my most photogenic moments… dealing with flushing

7. catching “POTS” disease

No, POTS is not contagious. Not even a little. There’s a possibility of genetics but this hasn’t been fully proven yet.

8. hypochondriac postural orthostatic tachycardia/POTS child refuses to get out of bed/why don’t schools believe in postural orthostatic tachycardia syndrome/is POTS a real disease/postural orthostatic tachycardia syndrome fake

…really??? First off, read this blog in it’s entirety. I even have some real medical journal references backing me up here and there – read those in their entirety as well. Let me put this how the cardiologist who performed my tilt table test put it to me: “POTS is very real.” Ha. He said more than that but that was the jist. When I questioned him “was this in my head?” “am I just anxious?” – he gave me a big fat definitive NO. Before the test was over, he took my hand while I was still upright and he showed me how dusky blue it was underneath my fingernails and how red my hands and fingers were. He made me look down at my legs and feet and note how discolored and swollen they were. And he pointed to the monitors which showed my heart rate above 150. My bp was on the high end. Within a minute of being laid back down, my face got back it’s color. My fingers turned white. My legs and feet changed back. And my heart rate dropped to about 100. The dizziness I had felt while upright? Instantly gone.

Want to know what he said to me then? If the symptoms were caused by anxiety, I wouldn’t have been able to make my symptoms stop on cue. I still would have had symptoms while laying down. I would have had the symptoms before the test even began. There wouldn’t have been a sudden significant change from being in a different position. My brain could not be like “POOF! DISCOLORATION IN MY LIMBS AND EXTREMITIES BE GONE!” To believe that this was in my head was doing me and my health a great disservice. He emphasized that while not life threatening on it’s own, I absolutely needed to take this seriously and need to rule out underlying causes, especially given my family medical history.

Want to know if POTS is real? Spend a day with me. No. Spend a week or a month with me. See ALL of my moments and days. The good and the bad. See how unpredictable they are. See how much I am stubborn and will ignore things and will pretend I am doing okay.. only to pretty much fall flat on my face. See how sometimes I succeed. See how very real it is for me and my loved ones. AND QUIT DOUBTING WHAT YOU DON’T UNDERSTAND.