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.

the problem with having a diagnosis many people aren’t familiar with

I say “the problem” as if there is only one – which is laughable at best – but there truly is a huge problem when you are diagnosed with something that is not widely understood or specialized in. The problem involves things like: your insurance company not wanting to pay, let alone approve, for you to go to a facility or specialist outside of your immediate area’s network, doctors not knowing how to apply the diagnosis to the rest of your medical history (including your family’s medical history) and not knowing how to adequately treat it in general.

Houston, we have a problem.

An immediate family member of mine recently had a stroke. She is only 39 years old and thankfully is okay and expected to make a full recovery. This is someone who has never smoked and rarely drinks. But she does have high blood pressure and some other issues. I, too, have a tendency towards high blood pressure. It’s been written off in the past as an effect of my POTS and also as a side effect of birth control pills (which I am no longer on) but what about genetics? I have a strong family history of hypertension.. with at least: My mother. My sister. Both of my brothers. My grandparents. I have heart attacks, cardiomyopathy/enlarged heart, congestive heart failure, coronary heart disease in the family history. And now we have added a stroke to the mix.

So I can’t help but pause at the thought of my high salt diet that is supposed to help the POTS. I don’t have the true hypotension that many people have and I am not sure how much that comes into play with the higher salt treatment because I more often have the hypertension. I also clearly have issues with generalized swelling and sudden weight gain/loss (despite having to go pee 5 billion times a day!). And separately, I do have an unruptured aneurysm (a “small developmental aneurysm of the supraclinoid segment of the right internal carotid artery projecting anterolaterally” to be precise. At least that’s what my MRI states).

I can’t go to my current doctors and bring this up looking for answers. In a lot of ways, they are in the same boat as me when it comes to POTS: we honestly just do not know. But it’s a serious question and certainly a legitimate one. We know that being on a beta blocker did not help me in a way it should have (though there were periods of too low of a pulse and BP – felt HORRIBLE!) and it made things like my flushing episodes and hives significantly worse. I know sometimes when I drink something like Gatorade, it helps. Other times, it makes me feel crappy. Same goes with certain foods and yes, adding salt. Sometimes, I know when I am drinking plain water that it is doing the trick and other times, I need something more. So am I having periods of needing high salt and other times, I don’t? Is that what my swelling is all about? The circulation issues? The flushing? Is it working in cycles? How is this affecting unrelated health problems or potential health problems? What is unrelated and related anyway? No clue. It is all just one really big, fat question mark.

POTS patients are not all created equal. That can be said about patients for autoimmune disease and really, let’s face it… any disease out there! It’s just like how we all have different DNA and fingerprints.. everyone is different. This adds to an already complicated, misunderstood situation. Then there is the lack of time, the lack of resources…

Here’s the thing about me. I see a lot of times on the support group Facebook pages that people are really scared about their diagnosis of POTS. I am not. Disclaimer: I’m saying that matter-of-factly about myself and not in judging way about other people. I can understand the fear. But I know when my heart is skyrocketing (which I have lived with my whole life pretty much so I find it to be quite “normal”), it is because of my autonomic system. I am not dying. I do not feel like i need to go to the hospital because I already know what the problem is. I’ve been living and dealing with many of these symptoms as far back as I can remember (childhood) and I know how to live with them. It’s exhausting and it’s annoying and sometimes, it just plain does NOT feel good. But what I have found with some doctors I have seen is that they expect that I am terrified and need to be soothed. I don’t need any soothing. My questions have always been “can we make this better? Can I *FEEL* normal? Can we fix this?” They have not been “am I going to die? Is this dangerous?” I am not panicking. So when they’ve given me various pills and treatments that have either done nothing or have made things worse, I start to settle into the thought that this is just something I need to deal with and I know that I can because I always have. …Though I should openly admit that I may very well lose my mind if I continue trying to live a full life while feeling this rundown and exhausted. I don’t faint. I am still able to do things though not always at my best. I am still working. If my life is not in danger and going to the doctors is just going to continue producing the same answers that don’t even help over and over again, what is the point of stressing about taking the time I already don’t already have enough of to go to appointments? What’s the point of stressing about fighting my insurance company to go out of the area? I can tell you that stress surely exacerbates my symptoms so I want to minimize the stress as much as possible.

Sometimes in life, there are events that just change you. It is crazy how things happen and how suddenly life can change in a single second. It can change your perspective, renew your appreciation and gratitude, give you a wake up call… I had an event like this almost two weeks ago and yes, it was the fact that my sister had a stroke. It was at a family party and it happened when she was talking to me.

I believe I have talked about my family medical history in previous posts. It is extensive just between both of my parents. They’ve both had cancer. My dad had congestive heart failure (cardiomyopathy & enlarged heart). My mom has Sjogren’s Syndrome. That’s just the beginning of their lists. Add in my siblings, grandparents, aunts & uncles… it takes literally about an hour to go over the history with new doctors. Most of their histories start a younger ages too. I have given up writing this stuff on their forms and instead of a pre-printed list that I bring and write “see family history paper” on the form. Just my maternal side of the family takes up a whole page, typed in a 10pt font. This is why some of my doctors take the POTS diagnosis and want to smack some other doctors for downplaying the diagnosis to me. First of all, they know me. It gets downplayed and it confirms what I have in my head because I downplay it myself. Second of all, they are legitimately worried about where my health is going and for all the right reasons, obviously.

My ob/gyn took me off all hormonal birth control because of my spikes in blood pressure. She told me that she had a bad feeling about me being on it. She also didn’t like the higher estrogen ones because of my mom’s history of breast cancer but her main concern was the blood pressure and the increased risk of stroke. I can’t say enough how much she stressed this concern to me and even though I truly felt like “that won’t ever happen to me!”, I ultimately went with the thought that it was better to be safe than sorry and I also honestly love to be on the least amount of medications as possible. I never thought in a million years that it would happen to my sister instead. It really makes me wonder about my own blood pressure. How can I just write it off as being a part of POTS? For years and years and years, I wrote off my heart rate being most often over 100 (even resting) as just “who I am.” Multiple doctors questioned my pulse when they would find it to be at 120… 130… for no reason. One doctor accused me of having anxiety. And yes, “accused” is the right word. She was practically shouting at me even though I wasn’t anxious at all until she started doing that… wasn’t even my real doctor. It was the first time I met her because she was covering for my own primary doctor who had just went out on maternity leave. A few years ago, a pulmonologist I was seeing for my asthma wanted me to go see a cardiologist. She was the first doctor that really spoke up about the tachycardia and was not satisfied with my standard response of it being totally normal for me. My mom actually went to see her yesterday and told her about where I am now and that her hunch of it not being just “something normal” was correct.

There is more to this story. But like I said, there is a problem with having a diagnosis many people aren’t familiar with. I can’t even guarantee that if my insurance company ever decides to approve me going to see a real live specialist in POTS that they will be able to provide me with any more answers than I do now. I have my doubts that they will know how to apply the POTS diagnosis with anything else that is going on, including keeping an eye on any risk factors for potential repeats in the family medical history. I do know there is a medical article published (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2600095/) that states this:

In some primary cases there is an hyperadrenergic state¹⁶ leading to increased norepinephrine, which could be due to impaired clearance or decreased uptake by the synaptic cleft. These variants cause profuse sweating, anxiety and tremulousness and the diastolic pressure is high. This is thought to be a genetic disorder with involvement of family members. In these patients symptoms will be gradual and progressive. They will have orthostatic tachycardia as well as associated hypertension.

I at least know my diastolic tends to be high. I believe I have my norepinephrine levels checked before and it was normal? Not positive on that though (the fact that it was done at all, I mean).

It’s frustrating. Beyond frustrating. I want to take my health seriously.. even when I think I am being crazy (my sister thought she was as she was headed to the hospital!). Where do you go from here? When you have doctors who assume that the testing falls on a different doctor (and insurance companies won’t let some doctors do some of the things they want to at all), it feels like all you’re doing is going in circles.

 

[And as a brief note: I haven’t been able to keep up with this as much as I would like (to say the least). I appreciate the comments and hope to get back to them when I can. I also would like to catch up on some blogs I haven’t been able to read as well. This is part of what happens when you’re trying to keep up with everything in life.. stuff falls to the wayside even when you don’t necessarily want them to. I just knew this subject was something I needed to talk about after what happened. So I got it out as soon as I could.]

the swelling timeline

I’ve looked at my tagged photos on Facebook over the past couple of years and tried to put together a timeline of photos that show my fluctuating swelling/weight gain. I can see the difference in my face, arms, chest, abdomen and legs. I originally thought that the majority of the swelling started to occur about three years ago during a vacation in Disney World – at the time, I attributed it to medication I was taking for migraines. However, looking over these photos made me remember that I’ve had periods of swelling long before that… and most likely just wrote it off as having a bad PMS month or two or three. The weight gain started with it around the time of that trip though and worsened after taking the beta-blocker and three different anti-histamines over several months in the beginning of 2013. I took myself off because the beta-blocker actually worsened flushing episodes and did nothing to change my vitals (though there are times I think it may have even made the swings more drastic). So here are the photos in chronological order from Christmas 2009 to now with the last photo being the most current (I blurred out anyone that isn’t Sean or Scarlett). There is about a billion pictures because sometimes the changes would happen over the matter of a week or two, sometimes a month, and sometimes even over the course of a singe day! Sometimes the swelling is slight but others are more noticeable where I gained a lot of weight. It is one of the reasons why my doctors pushed for me to investigate my health further in the first place. I am also currently the biggest I have been since giving birth to Scarlett which is odd given the fact that I have not done anything to warrant weight gain. In fact, there are times where I probably should have lost weight instead but the truth is that this isn’t likely a real weight gain. My body has a mind of it’s own. I swear.

Truth.

The issue with me isn’t so much what I can’t accomplish because of POTS, autoimmune stuff or whatever.

“Whatever, I do what I want!” Okay… For the most part. Or at least, a part of the time.

The issue with me is how I feel, physically, every day of my life. Even with rest. Or better diet.

It is not normal to feel like you might drop by the end of an ordinary day at the office. Not an exaggeration. I leave my job feeling like I may very well pass out or crumble. Heck, I feel like that sometimes without ever stepping foot into my office or even out my front door!

It is not normal to break out in hives and feel like my eyes are shutting over things like slight temperature changes. Random food. Whatever.

It is not normal for my heart rate to skyrocket from ordinary routine things of daily life. Standing up. Walking. Picking something up.

It is not normal for my heart rate to keep beating at such a high rate simply because I am sitting up at my desk. Or doing nothing at all. Or standing for even just a few minutes.

Nor is it normal for my heart rate to suddenly plummet because I moved suddenly.

Same deal with my blood pressure. It swings up and down as it pleases but mostly up.

It’s not normal for my blood to suddenly drop down to my lower body, making me look paler than a vampire.

It’s not normal how beet red and hot my skin gets. Or cold and purple.

It’s not normal for my eyes to often feel like I am reopening a wound from the simple act of blinking.

It’s not normal to swell up and gain weight when there is nothing to warrant the weight gain.

It’s not normal to wake up one clothing size and be a size or two bigger by the end of the day.

I do get a lot more done than I give myself credit for. I need to focus on that over what I don’t get done. I probably do more than some people without anything going on do but it’s plain to see something is not right. You can see it in my face, on my skin, on my body. You can see it when you take any of my vitals – especially throughout the day. You can even see it in some of my lab work.

But like I said, the problem isn’t so much about what I get done or don’t get done (though at times, it IS an issue).

I have been tired for as long as I can remember. Since I was really small. I feel very worn out by the every day details of living an ordinary life and always have. I was thought to be lazy and all sorts of things that I unfortunately believed about myself. It was what happened while I was growing up undiagnosed. I know that I push through a lot of my life because I learned to do so at a very young age. You learn to work around issues as if they are the norm. But there does come a point where your body is like “enough already!” and there is just no room left for any more denial.

And that is what I want fixed. I want normal energy levels. And I want to stop swelling up and feeling like I can’t think straight because I don’t have proper blood flow going to my brain. I want to stop having allergic reactions to my life.

No, I don’t have what many deal with where it came on suddenly and their lives changed in that way. This has been something I have been dealing with for almost my whole life.. most of which I adapted to and then I have been having bouts of worsening symptoms.

That’s my truth. That’s my story. And I am no longer sorry to those who don’t get it or more so, to those who chose not to. I didn’t ask for this. I am doing the best I can with what I’ve got. I’m just sorry that there seems to be more questions than answers.

brushing it all under a rug.

I’ve been in hiding.

There are so many of you I want to reply back to and I will, I promise. In fact, you are part of the reason I am returning. I’ve wanted to face my health full force and I have let myself down on that front. I’ve said it before and I’m sure I’ll say it again because it has always been a common theme in my life: I still very much have a part of me that thinks if only I would just change my thoughts, it will get better. The bad will no longer exist. Maybe a reason I feel the need to go back to this belief is this: I have a family member who is very important to me that grew up in the same way that we were not to be hypochondriacs. This family member told me very specifically that they think most problems are just all in our heads. They have compared me “jokingly” to another family member who happens to really be a hypochondriac. And I would be lying if I said it doesn’t eat away at me. I have not heard as much from this person as I have gotten worse and I do know that a part of it is because I have changed. I have become more solemn and down. I’ve become busy and more tired. I am afraid that the other part is they don’t really believe what I am going through is real. And I think the reason why it gets to me more than anything (other than how much I love and respect this person) is that a part of me doesn’t believe it’s real. It comes back to the thought that this is in my head. I am trying my best to make my health issues not be what my life is about. I have so much more to me.

I have gone through years of having symptoms and worsening periods of time. I’d start searching for an answer and when something would come back negative or i would start to feel okay again, I’d give up the search… until something new would happen and I would feel like I had no choice but to find out what was going on. My problem is that I have always been too open. People get tired of hearing about things that never get resolved. And in this wonderful, complicated world of chronic/autoimmune/etc. illness, you go down about a billion paths before you ever begin to figure out what you should be getting tested for. People start to feel like this all too much. You have to be exaggerating. You have to be just wanting attention. You must be a total drama queen.

No. How about I want to understand? How about I would like to be understood? How about I am a total think out loud kind of person? There are so many people that have reached out to me because of my openness on this blog. I say how i feel in any moment and sometimes I can contradict myself but this is me. This is the real me and sometimes I am overdramatic but the funny thing is that I never do it as an act. I cry because I cry. I laugh because I laugh. I love because I love. And I have my own way of expressing it. I have my own way of dealing and sharing. And I share all that I am going through with this and more because I wish more people would be fully open. It helps me. Raw honesty. Finding those people you can truly relate to. No matter what the subject. I want to know the good and the bad. I don’t want to just know what is physically going on. I want to know the feelings. The whys. So I just continue sharing. I drive some people nuts but I have learned through the feedback on this blog and even some of my posts on Facebook, my words and thoughts matter. You can’t please everyone but I hope that others know how much their words and thoughts matter to me as well. Life is not easy and there is nothing worse than feeling like you are alone in your feelings or what you’re going through.

I’ve taken pictures of symptoms but I felt one should be taken in a moment of quiet grief and isolation for me. I was in bed because I had to be. I couldn’t be up and about and I was frustrated. She couldn’t this time but I do have a best friend who would and has laid there with me. I have a boyfriend and daughter who will do the same. I feel lucky in that way.

There is always something and I am all too aware of that. My doctors were positive I had Sjogren’s Syndrome. My mom has it and I have symptoms. By positive, I mean they would have been willing to put money down on it. But I failed to meet all the criteria – namely the lip biopsy. I may show early signs of it instead but here is where I hear a lot of doctors will stop. The lucky part for me that most people don’t have is that despite this, my doctors still knew something was wrong and they have pushed for me to keep seeking answers. It was never written off as me being a mental case. They never tried to push medication on me. I have abnormal test results and as much as POTS and autoimmune diseases and chronic illnesses are often considered “invisible” – I had and have a lot of visible symptoms. You can see the fatigue in my face a lot of times but I am not even talking about that. I have been validated by my own doctors. How many people can say that?

I brush it all under a rug anyway… despite having some of the most clear cut evidence. It is really hard to face as a whole. I am so exhausted sometimes I can’t wrap my head around what’s been done, what needs to be considered further, what needs to be done next. I have to focus on work and my daughter and my home and my life. Insert spoon theory here (http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/)… I don’t have enough spoons for normal daily life! I used to struggle in the past but I would have periods of getting better and that’s just not happening like it used to anymore. I am not rebounding like my younger self and i am not by any means “old.”  I am not even staying in the same place. I am getting worse. And the more I get worse, the more I struggle to stay on top of things, the more i fail to meet the goals and plans to get myself better. So it’s a nice little cycle that only seems to point to one thing: me getting worse. This angers me. I don’t want that… so much so I will push myself over the edge.

I last wrote about my swelling. This has worsened. I am gaining weight and for no reason. There are weeks where I have to force myself to eat because I have zero appetite. I went to a doctor yesterday that I haven’t seen in a couple of months and when she came out to the waiting room to get me, her eyes widened. She was extremely concerned because I am “very swollen and bloated.” Not just in my legs and feet or abdomen…but also my upper body, my face. I am so uncomfortable. I haven’t had a normal menstrual cycle in quite some time. It’s very light and I never get relief. In fact, a way I have described it is that I feel pregnant but without actually being pregnant. It is getting worse and worse.

My blood pressure and pulse has been all over the place. The swings back and forth are really getting to me. I have tried to document a lot of it today (see below). Since this morning’s low of 56 bpm, I have not been able to get my heart rate below 100… and I have been laying down for the majority of the day. I have a headache I can’t get rid of and to be perfectly honest, that’s probably a major reason this post is all over the place (sorry guys!).

First thing this morning from lying in bed to standing. Horrible feeling.

Being upright today has not been so good.

I could not get my heart rate under 100. First photo is me laying down, second is me sitting and the third is me standing.

swollen legs and feet. high bp when standing, low bp when laying down.

I just wanted to at least let people know I am still here, I have have read and appreciated your thoughts and questions and I haven’t forgotten about you. I am currently struggling to overcome and since I have overcome so much in my past, I am sure I will get through all of this too. I just have to continue doing it my way and for me, that’s keeping real about how I feel whether it be positive or negative. Truth is, it doesn’t matter if I am positive or negative – my heart and blood pressure and body is going to do as it damn well pleases. In fact, I think the one thing that would make me worse is pretending to be positive when I am not feeling that way or trying to suppress my real feelings because so and so thinks I should. When I am feeling positive, I am going to really feel it just as I will allow myself to feel the negative as well. I will cry and do what I need to do.

The problem with brushing things under a rug is eventually, you’re going to trip over it. Thank you to everyone who has stuck by and with me thus far anyway. I know it isn’t always easy… but here we are. And for that much, I am grateful. This includes my doctors. Their patience and understanding of my hang ups have been more help to me than they realize. At the same time, they have been firm and do not hesitate to lecture me. Yesterday, the doctor told me that my #1 priority right now needs to be my health. I need to prioritize it over EVERYTHING, including my job. There are so many unanswered questions and she feels that the sooner we figure this out, the sooner we may be able to prevent future complications. She also feels that some of the things going on with me are red flags for some serious stuff and I can’t just dilly dally, waiting for the answers to fall on my lap. I can’t make any promises but I do hope with all my might, that I can get myself together enough to get this done. Just push right on through despite my concerns about time, money and missing something. Easier said than done… that’s for sure.

an evening in the life of THIS pots patient

What exactly are my vitals doing while I am standing, sitting and laying down? Well.. it can vary from what I am about to show you because some days I can have very low blood pressure (hypotension) and periods of low heart rate (brachycardia). But if you were ever wondering why the heck I am so tired and run down all the time… this may explain it more for you. My heart and circulatory system and body is constantly swinging all over the place. It’s not an exaggeration when people say that having Postural Orthostatic Tachycardia Syndrome can be like running a marathon constantly all day. When my doctors figured out this part of what my body was doing, it explained so much over the years. And because my body is constantly changing and the blood isn’t flowing properly, what bothers me today may not bother me tomorrow and vice versa. I have learned (at times the hard way, unfortunately) that I have to be overly cautious when it comes to putting certain things in my body. Medications and things like alcohol can affect me differently and drastically depending on the day. My autonomic system is not functioning properly and is unpredictable — this in turn can make my body unpredictable. It makes ME unpredictable. I am in the middle of figuring out WHY.

Long story short: I wasn’t feeling well AT ALL by the time I got home from work today… all day, all I wanted to do was lay down but couldn’t. Starting from the very top left corner, going across, then starting from the left of the next row, I will explain the circumstances surrounding each and every one of these photos. And yes, this is in chronological order. I will also calculate the changes in blood pressure, heart rate and the pulse pressure. An explanation of pulse pressure can be found HERE.

Photo 1, top left: I came home from work and had been laying down in my bed for approximately 5 minutes. I felt so run down and fatigued and I had what felt like the beginnings of a migraine. I felt cranky. Still having flushing issues from earlier today. Blood Pressure – okay (optimal is 120/80); Heart Rate: on the higher side but I often have a higher resting rate (normal is still considered to be 60-100 beats per minute). Pulse Pressure: 46 (optimal is 40).

Photo 2: This was immediately upon standing up out of bed. I felt a bit dizzy but nothing crazy. Really not feeling well, achy. BP: Shot up. Hypertension is anything over 140/90.. and they really do not like for the bottom number to go above 100 but mine likes to do that from time to time. HR: immediately went up 25 bpm. PP: 38.

Photo 3: I started walking and headed toward the bathroom. I came back to check myself again – I have found that standing still vs. walking makes a difference in my blood pressure. When I start moving around, more often than not, my pressure will plummet but as long as i am upright, my heart rate will stay high. BP: dropped, top number most significantly. HR: same. PP: 21

Photo 4: I was still moving around and still up on my feet. I stood still for a few minutes. BP: stable. HR: up 6 bpm (that’s a total of 31 bpm from laying down… as long as I am standing, it will either stay there or keep climbing). PP: 29

Photo 5, 2nd row to the left: I really felt lousy so I laid down waiting for dinner to be ready. BP: dropped completely to normal. HR: dropped 24 bpm. PP: 36

Photo 6: This is after getting up, sitting at the table for awhile and finishing up my meal (spaghetti with meatballs). Still felt pretty lousy. Heart palpitations – possibly from the flushing episodes I was having.. i get extra sensitive to foods and such during those kinds of days. BP: skyrocketed back up hypertension-style. HR: up 5 bpm from when I was laying down. PP: 40

Photo 7: Still sitting at table 15 minutes later.. just trying to relax. Feeling very lethargic and blah. BP: still high but stable. HR: dropped 10 bpm. PP: 42.

Photo 8: Walked from the kitchen back to my bedroom and stood. BP: bottom number went up, top number went down. HR: up 19 bpm. PP: 25

Photo 9, 3rd row to the left: I decided to experiment. Do a version “poor man’s tilt test” if you will. So I stood still and rechecked my vitals between 5-10 minutes or so. By this point, my feet and legs were already getting the lacy purple look to them and swelling (this is from blood pooling). BP: stable but the bottom number was still too high. HR: Up 29 bpm from when I was sitting. PP: 25

Photo 10: still standing in the same spot for about 5-10 minutes. Legs and feet looking worse. I feel off. BP: about the same. HR: Up 31 bpm from when I was sitting. PP: 27

Photo 11: still standing in the same spot for about 5-10 minutes. Legs are swollen around the knees and I was definitely purple with splotches of red. legs are starting to feel a bit more shaky and I have that “weak in the knees” feeling. BP: about the same. HR: up 32 bpm PP: 22

Photo 12: I had to move at this point because I felt like I was going to drop otherwise. I had been standing still for a good amount of time… if you ever see me standing, you will likely also see me fidget and move my legs and such a lot – now you know why! I walked around a bit and then checked again. BP: dropped. HR: dropped 1 bpm. PP: 21

Photo 13, 4th row to the left: I decided to keep on with my experiment and stand still again. By the time i took my blood pressure, I knew it was time to lay down immediately after. BP: shot back up. HR: same. PP: 25

Photo 14: This is after I’ve been laying for about 5-10 minutes. Legs and feet were starting to look normal again. BP: stabilizing and going back down. HR:  dropped 32 bpm. PP: 39

Photo 15: This was probably taken about 30 minutes after I laid down. BP: still dropping.HR: dropped 35 bpm from when I was standing. PP: 43

Photo 16: I decided to take it again once I was sitting up in bed. BP: stable but went up. HR: went up 15 bpm. PP: 35

Today, my heart rate was actually low for what it normally goes up to and my pulse pressures tend to drop even lower (especially after things like a shower or bath). If you look HERE you can view a day that truly was all over the place. So tonight didn’t look so bad, comparably speaking, but it did not feel that way to me. In fact, i probably felt more lousy today than I have in awhile. However, I think most of the daily “damage” comes from the swings in my blood pressure and heart rate and also my pulse pressure being either too narrow or too far apart. I feel my worst usually when my pulse pressure is not right. Notice how stable I am only when I am laying down. I feel more alert when I lay down and I think by the time nightfall hits and I am in bed, I feel more awake than I did the entire day. Why am I sharing this? For others who are dealing with the same thing so they are not alone but also for awareness. Next time you see me upright (standing or sitting) and I seem out of sorts… keep in mind what my body is doing. Remember how when I was standing, all the blood was pooling to my legs and feet? This means that my body is not adequately pumping my blood back up again and ultimately, I am not getting as much as I should back up to where I need (like my brain, for example). Probably the only time I have “proper blood flow” throughout my body is when I am horizontal. I couldn’t make this stuff up if I tried! But I am working on figuring it out and accepting where I am in the moment because believe me when I tell you – this has been one of the most frustrating things I have ever dealt with.