Christmas and dysautonomia

Christmas is supposed to be this time of good cheer and happiness and fun.  There are thousands of songs devoted to "the most wonderful time of the year" and whether you celebrate it for religious reasons, as a time of giving, or a massive extravaganza of gift exchanging, it's supposed to be a joyous experience. 

When you have POTS however, the holidays become a test of strength, endurance, mental and physical stamina, and extra management of symptoms.  Shopping for gifts (online of course since walking is out!) and wrapping them, sending cards, getting dressed to go out, cooking food, and visiting or being visited are all activities that are challenging for people with dysautonomia. 

Simultaneously, I feel blue and depressed at not being able to fully participate and having to sit home while knowing that other are celebrating.  It's hard to turn down invitations and to watch how much fun others are having and how many activities everyone has packed into their lives. It's depressing to say once again, "maybe next year" I can do this or that or whatever the activity or party is.

So how to get out of this frame of mind and enjoy the holidays?

I decided to make a list!  Here are my five top reasons that I'm glad I have hPOTS for the holidays:

    5. The inevitable flair up of IBS will ensure that I won't gain any weight.  Heck, I'll probably lose weight!
    4. I will have all the symptoms of being drunk without having to drink anything alcoholic!
    3. Nobody will expect me to help do the dishes after dinner!
    2. Since I will have a little extra time off work, I can catch up on multiple Law & Order SVU all day marathons!
    1. I get to see my newest nephew William!  :-) 

Oddly, I do feel better after making that list!  And there is an SVU marathon tonight so let the fun begin...

I wish everyone reading a very merry Christmas and GOOD HEALTH, happiness, peace, comfort, and prosperity in 2013!

Giving Thanks

All I want to do in this post is give thanks to a few folks who have helped me get through the past year and half. 

My most sincere and heartfelt thanks to:

• My awesome husband, who has stood by my side and has taken care of things too numerous to post here, and who tells me I will get better in my worst moments.
• My mom, who stayed with me when my husband was out of town, who brings me food, and who has helped take care of me at a time when I should be taking care of her.
• My dad, who wants me to get well, who always asks how I'm doing when I call, and who shares sometimes the bad luck that seems to follow me. (I think it is hereditary!)
• My brother and his wife who came when I called, who check on me, and who have given me my nephew.
• My friends who have never wavered in their support, who send cards and emails, who check up on me, and tell me it will be better some day. 
• My cousins, who send me cards and call, who help take care of my mom, and who are always there. 
•  My mother-in-law, who always asks about me in the midst of her own troubles, and my father-in-law, who is in much worse health than I am and who shares "war stories" with me. 
•  My sister in law, who has sent me emails of support.
• And my three sweet, funny, and sometimes annoying cats, who have always been there (not that they had a choice!) when I was lonely or down or sick.  :-)

I love you all and I am so determined to get better so that I can stop being a burden and become the person who is there for all of you.  You have all uplifted me and given me hope in the worst of times this year.

Writing about you has reminded me that although I have a disabling illness, I also am a very lucky woman indeed. 

Thank you from the bottom of my dysautonomial but very grateful heart.  :-) 

And a very heartfelt wish for a good Thanksgiving and good health to anyone who is reading.  If you are sick or alone on the holidays, remember that you aren't alone in your experience.  The day will pass and with tomorrow, there is always hope for a better day in some way. 

Singing the hyperadrenergic pots blues

ba da ba da bum
I get up and fall down
ba da ba da bum
I go back to bed
ba da ba da bum
The room's spinning madly
ba da ba da bum
WHAT'S WRONG WITH MY HEAD??

ba da ba da bum
So I went to my doctor
ba da ba da bum
He said "I know what you gots!"
ba da ba da bum
"Your brain just isn't working"
ba da ba da bum
"You have hyperadrenergic POTS!"

Refrain:
Oh I got the hPOTS blues da dum da dum
Oh yeah, I got the postural orthostatic tachycardia syndrome blues.  da dum da dum
I'm sick all the time
I can't hardly rhyme!
I want to do more
But my brain's acting poor!
Oh yeah, I got the postural orthostatic tachycardia syndrome blues. 

One more verse:
ba da ba da bum
I need to eat breakfast
ba da ba da bum
My cats need to be fed
ba da ba da bum
I drag my butt to the kitchen
ba da ba da bum
And then go right back to bed!

Refrain

This is a really silly posting I know.  But sometimes when all else fails, you just have to laugh or do something absurd. :-)

Please add your own POTS blues verse to the comments if you have one!

My report card this week: 4 D's

Depression, Despair, Down-in-the-dumps, and Dizzy. 

That pretty much sums up the past three days for me.  After weeks of feeling some recovery and feeling stronger, I got knocked back big time and had what I call a POTS "attack".  For me, this is where my blood pressure races out of control and I lose all strength in my body so I can't stand or function.  And recovery is slow...sometimes weeks, days at a minimum.  I spent 48 hours bedridden, barely able to get up to do the basic things like eating and going to the bathroom this past weekend.

I think what set it off for me was four stressful events:  having to get out of the house to visit someone (which I wanted to do but any external event causes me extreme stress since I don't know what my body will do), having a stressful event at work, having an argument with someone close to me, and having visitors to the house for the first time in a year.  All of this occurred within a period of a week and half.  It turned out to me too much for me and I was reminded that although I'm getting better, that things are still pretty fragile. 

Homeostasis.  As defined by wikipedia:  "In simple terms, it is basically a process in which the body's internal environment is kept stable."  

I want homeostasis for my body.  I want to live a normal life again.  I'm so tired of having to muster every bit of mental and physical strength just to do something simple like leave the house. 

But I don't have a choice in that matter right now so I am once again resorting to every last mental and physical trick to try to recover and get sort of back in the saddle.  I have learned that I need to continue to be careful and that recovery will be slow.  But I was getting better and I believe I will continue to do so.  It was just a couple steps back this weekend after several steps foward, that's all.  At least that is what I'm telling myself.  :-)  And yes, I can still smile, at least on my blog and in real life also.  :-) 

If you are reading this, I am asking something of you this time.  Please wish me strength.  I believe there is power in collective thinking.  Please send me good "vibes" and thoughts of health and strength.  I will do the same for you. 

Motivation

For those of you who are regular readers, I'm sorry for the lack of postings lately.  Along with having hPOTS, I am dealing with some issues in one area of my life right now that have negatively impacted me.  I can sum it up briefly by describing these issues as "mean people".  And I will leave it at that for now other than to say that I haven't felt motivated to write for a while. 

However, I did want to share with you something really really good that has happened, and that is the birth of my beautiful nephew William! 

William has been a strong positive motivation for me to get better and in one of my very few social outings this year, I went up to the hospital to visit him the day he was born.  I was able to get to his room with the help of a wheelchair and my husband who kindly pushed me around in it. 

My first impression of William is that he seems to be a calm and laid back little guy.  He let lots of people hold him and pass him around without much fuss on his very first day of life.  He cried a little when he didn't like something but then he got over what bothered him and just enjoyed laying around wrapped up snugly in a warm blanket. 

I'm going to try and take a cue from him and not spend so much time fussing and worrying about things that aren't worth any time fussing and worrying about.  And maybe I'll keep a warm blanket close at hand during the day.  :-)

Something I am looking forward to

I'm going to be a new aunt in a couple of weeks.  This will be the first grandchild for my parents and my only "blood" nephew (I am lucky enough to have seven awesome nieces and nephews via my husband). 

I am really excited and very much looking forward to meeting him!  In fact, in some weird way, I already feel a connection to him.  Living with POTS can be so depressing.  As I find ways to cope, my nephew has been like this beacon in the dark for me.  He has given me a renewed sense of motivation.  I want to be well so that I can get to know him and I am so happy for my parents who will now have a grandchild. 

I have conversations with him sometimes in my head and I like to think that in some cosmic way, he can hear me.  Even if that is completely implausible and silly, it makes me feel happy to talk with him.  I'm sure I will be his favorite aunt once he really can hear me.  :-)

Wouldn't it be great if babies were the cure for POTS?  :-)

The good, the bad, and the REALLY bad

I've been down for a year and a half now with my most recent attack of hPOTS and thought it would be good to reflect on what has helped me during this time and what has not helped so here goes:

MEDICINES (in order of starting to current):
1. Metoprolol (a beta blocker):  GOOD.  Helped lower my blood pressure but made me sleepy.

2. Norvasc was added to the metoprolol help lower my blood pressure.  This was a REALLY BAD medicine for me which made me swell up and I had to stop immediately.

3.  Cymbalta and celexa:  REALLY BAD.  Made me feel HORRIBLE.  Increased dizziness and fatigue.  Felt like I was half dead.

4 .  Bystolic:  GOOD Prescribed to replace the metoprolol.  Helped a lot.  Lowered my BP but not enough and I still had attacks of the "dizzies" so the doctor added:

5. Clonidine:  Although this is supposed to help hPOTS, it was REALLY BAD for me.  I was bedridden for two weeks and then spent the next 10 weeks barely functional.  It felt like gravity was pulling me down constantly and I was extremely fatigued and vomiting so much that I had to take medicine to control it.  Clonidine did take away my dizziness but I could not function.  The doctor FINALLY agreed that although I was "safe" (my blood pressure was more stable), that having having no quality of life or abilty to leave the house was not acceptable and took me off it.  Hallelujah!  The withdrawal took 2 weeks since the dizzies came back in force for a while but the fatigue finally lifted. 

6.  Bystolic at a higher dosage.  GOOD.  I'm not ready for prime time yet but so far, I am feeling the best on this drug.  I am able to get in to work half days, can take brief trips out (as long as I can sit), and occasionally, I actually feel "normal" for a few hours. 

DIET AND EXERCISE
1.  Exercise.  One of the most difficult things about hPOTS for me has been the inability to exercise.  I was previously athletic and exercised daily.  The inability to stand up or walk has been one of the most depressing things I have ever faced.  I did find however, that I could still exercise by using a recumbent bike.  It has literally saved me from despair because I could move and as it turns out, exercise is GOOD for hPOTS!  My doctor suggested adding aerobic exercise to my day, so I have increased the resistance on the bike and started lifting 2 pound weights as well.  It's tough and sometimes I get very dizzy but overall, I think it is starting to help me get stronger.  And mentally, it helps me to stay positive.  I highly recommend a recumbent bike to anyone who has hPOTS and can't walk. And my personal belief is that exercise is beneficial to any situation.

2.  Diet.  I find that eating a protien and drinking fluids several times during the day...literally every 2 hours, keeps me more stable.  If I don't do this, or if I eat too much sugary food, I feel like I'm having a diabetic attack.  I get dizzy (or dizzier), shaky, see black spots, and my BP gets erratic.  Non-processed foods, protien (lean meat), almonds, and just generally a well balanced diet eaten in small portions often seems to work best for me.  I have to watch my weight more since I'm not as active but I found that it is critical to how I feel each day to eat well.  My weakness is ice cream unfortunately, but if I allow small portions, it's OK for me.  There's not much fun in having hPOTS so I think the joy of ice cream once in a while outweighs the drawbacks.  :-)  

3.  Not exercising, laying in bed all day and eating badly  =  REALLY BAD.  I physically feel worse, and find that it quickly leads to depression to not get up even on the worst of days. 

EMOTIONAL AND MENTAL WELL BEING
This is personal for everyone but here are things that help me:

1.  Staying in touch with friends and family.  This is hard since it takes energy but due to technologoy, I find that I am able to keep in touch via email, blogging, and phone.  Sometimes I can't do any of those things but I make efforts to as much as I can.  And I have been so lucky that I have had many friends and family stand by me during this time. 

2.  Finding things I can do that I like.  One of my salvations has been reading.  I also rediscovered crocheting which I do for others.  I like to write and usually write these blog entries when I feel sad and it somehow makes me feel better.  I've discovered that there are many things I can do sitting down.  I REALLY want to walk again some day but if I can't have that now, then there are things that I can still do that are fun. 

3.  I avoid negative people and those who bring me down.  This is not always possible but I try.  Some people have good intentions but say things that don't help.  I understand and accept this; it's hard to know what to say sometimes when people are having problems.  Unfortunately, I have also encountered people during this time who have intentionally tried to hurt me (I will write about this in a future blog).  I have learned to find much inner strength during this time but it takes a lot of energy so I just avoid these people as much as I can. 

4.  I find something in every day that makes me smile OR I remind myself to be thankful for something every day.

5.  I pseudo-meditate.  I don't have the patience to do meditate very well but sometimes if I am stressed or feeling bad, I take some time to think positive thoughts.  I have no training but I use my own thoughts based on readings and past experiences with yoga and exercise.  I am able to lower my blood pressure at times and believe/hope that being mentally strong and at peace helps recovery.

I am interested in hearing what has worked or not worked for you so drop me a line or respond to this post if you want to share. 

Why do bad things happen to good people?

My doctor sent me a book called "When Bad Thing Happen to Good People" by Harold S. Kushner.  Kushner is a rabbi with a son with a degenerative disease who would die young.  He wrote the book to try to help good people who encounter bad things try to make some sense of it all.

The book has somewhat of a religious bent but it is also philosophical and I'm finding it helpful to read a little every now and than.  I'm one of those people who do not follow any organized religion but I consider myself spiritual in that I feel a connection to others and  I think there is something more to us than just our physical bodies.

Throughout my life, I mostly followed the train of thought that if I lead a good life and treat others with kindness and respect and that if I take care of my physical body, that the fruits of my efforts should pay off in some way.  Until I got hPOTS, I believed that I had more control over my destiny than I actually do.

I have come to believe in more randomness and that bad things just happen sometimes and they can happen to people who are good.  And the converse is also true; I have experienced this year watching a very bad person have very good things happen to him.  Life isn't fair and balanced but I admit I have spent some time since becoming ill asking "WHY ME??".   What did I do to deserve THIS?  And the answer I have come up with is...NOTHING.  I did nothing to deserve this.  And many other people who are suffering and have suffered, some much greater suffering than this, also did not deserve what happened to them. 

So why be good then?

This is something I have asked myself repeatedly.  I even sometimes joke with friends that instead of leading such a good life, that I should have been drinking and smoking and cheating and lying all along and maybe I would be healthy and wealthy instead of sick and not wealthy.  :-)  

For me, it comes down to this:   I have to be true to myself.   And that means that I think we should all try to be the best we can be.  I think we should treat our bodies well.  We should be kind to others.  I believe in the power of thankfulness both for what I have and for what others do for me.   And I still believe that good trumps evil.  It may not manifest itself in material wealth, material comfort, or good health, but spiritually in my book, good is better than bad.  I cannot be bad or hurt others just because choosing good does not guarantee some sort of "payback" of goodness.

It has taken a long time but I have learned that being angry about having hPOTS and asking why this happened is not helping me.   This sucks to be sure and a lot of bad things that have happened to others people sucks.  But if I spend the rest of my days living in anger, then I am wasting my life.  Anger is such a destructive and difficult emotion.  I don't want to spend my limited energy asking why any more.  I will do what I have always done; continue to treat my body well and to treat others well, to be thankful every day for all that I have, and to focus what energy I do have on positive endeavors. 

I haven't finished the Rabbi's book yet so I don't know if he will ultimately tell me the answer in the end.  I hope that if you are reading this blog that you didn't expect that I had the answer.  I can only say that I am beginning to find peace within myself somehow and my hope is that this may help my recovery in some way.  Perhaps if my spirit heals then my body will follow. 

Stay tuned...

Courage and dysautonomia

To paraphrase Mark Twain, "Courage is not the absence of fear but the ability to act in spite of it."

When you have dysautonomia, having courage is a given because it can bring much fear into your life.  When you don't know how your body is going to behave, it can be a terrifying and anxiety ridden experience to go anywhere in public.  My own personal outings have included collapsing alone in a Walmart, sitting almost prone in work meetings because I was so dizzy I could hardly sit upright or stay conscious, and not being able to leave an event because became I too weak.  These are all humiliating experiences and real confidence busters for going out! 

This week, I'm switching medicines for the fourth time since my current protocol isn't working well.  It took me a week to work up my courage to do this.  Every time I try a new medicine or withdraw from one, it causes an immediate 2 week period of complete collapse followed by a slow recovery.  Extreme dizziness, fatigue (where it feels like gravity is 100x greater than normal is pulling down on my body), and stomach issues (vomiting, etc) are the norm for me during each medicine trial.  To get out of bed is an ordeal and I usually have to crawl to get from room to room.  This makes is extremely discouraging to keep trying things to say the least.

All this has also wreaked havoc on my job which creates more fear.  And then there's the fear of never getting better, the fear that friends will tire of you, etc.  The list of fears can be endless and overwhelming. 

It just occurred to me that having POTS is like it's Halloween every day!  :-)  (because of the fear...)  I know, another bad joke. 

So I come back to Mark Twain's quote about courage.  I think to live successfully with POTS you have to learn to accept living with fear, but you don't have to let it defeat you.  Living with POTS takes courage, lots of it!  In terms of POTS, I think of courage as being to get out of bed on a morning when you have extreme vertigo.  Courage can be taking a single step, or maybe on a good day, courage can be making a short trip to a grocery store. 

In other words, courage with POTS is really just carrying on with life sometimes.  POTS sucks... there you have it, and it causes all kinds of fears.  But this is the life I have to live and I choose to get up every day no matter how bad the day and do as much as I can each day.  I also try to find something every day to be thankful for, no matter how small.  Today I saw a hummingbird moth and I took it as a sign that tomorrow will be a better day.  Probably wishful thinking but it's OK to indulge in wishful thinking.  :-)

My wish for anyone living with POTS would be for it to disappear!  But if it won't, I wish you the best day you can possibly have each day and applaud your courage in living with dysautonomia. 

Dysautonomia: it's not for the faint of heart!

I had three good days in a row this week!  Woo hoo!!  Each time that happens, there is a little voice in my brain that says "Maybe it's really going to end!".  But so far, it hasn't and yesterday, following the three good days,  I had a REALLY BAD day.  My blood pressure was high and erratic all day, I had extreme fatigue, had the dizzies, and threw up in the morning.  I managed to drag myself into work in the afternoon but almost collapsed several times.  In addition, it was one of those work days where things didn't go smoothly. 

But when I got home, there was a little gift waiting for me from a friend (and fellow Toledo POTS lady). I opened the box and this pin was inside:  

And although my day was so very very bad, I laughed out loud at the pin and immediately attached it to my top.  It reminded me that humor can be found in the darkest of times, and also that people who care and good friends and family are the best medicine there is for the soul.

I plan to wear it often.  

Thank you Christina! 

Celebrities and POTS

It is common to hear a celebrity speak up about an illness due to their own experience with it or due to a close friend or family member who has the illness.  I decided that I wanted to see if I could find any celebrities with hPOTS.  I did a search on several variations of "celebrities with POTS" or "POTS and celebrities" etc and not suprisingly, discovered numerous sources of information on celebrities who smoke pot!  :-)

I'm sure that if you have POTS and are reading this, you can relate to the kind of awkwardness you feel when you try to explain it to someone.  You can either state the whole long name (and add "hyperadrenergic" to the front of it if you have h-POTS) and find people's eyes glazing over before you finish saying it.  Or you can say, "I have POTS" and watch them look at you as if you are a little loony.  Which you actually are sometimes due to the POTS.  

But getting back to the celebrity search...
.
As I pretty much expected, I could not find any confirmed information on a celebrity with the hyperadrenergic form of POTS.  I did discover however, that Greg Page, one of the founding members of the children's band "The Wiggles" has POTS.  Wikipedia posts this article about him: http://en.wikipedia.org/wiki/Greg_Page_%28musician%29.  

I also saw several references to the late actress Brittany Murphy as possibly having had POTS as well as her brother but could not confirm it 100%. 

And finally, I read that the series "House" did an episode where the mystery illness was POTS.  Here is the wikipedia article about the episode:  http://en.wikipedia.org/wiki/The_Choice_%28House%29 .  Although the episode was not one of it's highest watched, at least it may have raised awareness of POTS for those who saw it.

So any celebrity who is reading this, if you need a cause to support, there aren't many (none so far) takers for POTS or hPOTS so you would be the first! 

Oprah or George Clooney...who I'm sure are reading this...we need you!!   

You're not alone if you feel lonely!

I've been thinking of what to write in this blog over the past few weeks and I've decided the first thing I want to tackle is...loneliness! One of the side effects of this illness can be loneliness.  When you lose the ability for months or years to barely leave the house, when you miss holidays, family gatherings, and social events for that long, it can be a challenge to feel connected with the rest of the world. 

As much as I wish there was a pill that would cure POTS, I also sometimes wish there was a pill for loneliness.  I think that some doctors would say that there IS such a drug and it's called an antidepressant!  :-) Bad attempt at a joke, I know!

My personal feeling on this is that for me, it is better to face the bad things head on, such as being lonely and to accept them.  I think it is OK to sometimes say, "I am terribly lonely and I feel despair that this may never end".  The fact is...this illness IS terribly isolating. I try to rationalize myself out of it at times by telling myself that others have things much worse than I do, and that is certainly true.  I suppose the phrase "misery loves company" has some meaning. 

But it doesn't ultimately help me to face and deal with the isolation that comes with having a dibilitating illness.  As if having POTS isn't bad enough, you also have to deal with watching life pass you by as you spend yet another day in the house which no matter how lovely, comes to feel almost like a prison because you can't leave. 

So, what to do when you are lonely and depressed?  Here's what I do:

1.  I cry!  Just let it out! This seems to help release some tension but it can also contribute to a massive headache so, use with caution!   It can also be a drag on other people to see me crying, so I try to do it when I am alone.  Which is easy to do since I am often alone. :-)
2. I try to refocus on something, ANYTHING, to get out of the funk.  Of course, it's limiting what I can focus on because I have POTS and it's hard to focus and I can't do anything physical.  But I've taken up reading, crocheting, and writing. Many of my friends have gotten scarves this year due to my loneliness.  :-)
3. I count my blessings of which I have many to remind myself that I do have other good things in my life even if my health isn't one of them.
4. I try to think of what I have to look forward to if I can ever get healthy.  I'd like to believe that trying to focus on positive outcomes impacts recovery.  I don't know if it actually does but it does help me to think that it does.
5.  I remind myself that tomorrow is another day.  Sometimes a day of being down in the dumps is followed by a day where I feel better.  Not every day is a bottomless pit, just some of them.  Usually.

The fact is, POTS can be a very lonely road sometimes.  I hope if you are reading this that it helps you to know that you are at least not alone in having POTS and that someone understands.  If you have any tips on battling the lonelies, please feel free to respond or email me.  Your post may help others and sometimes helping others will help you feel better too!

Welcome to the hPOTS blog.  This is my first posting and I am just getting started on creating this.  Since I have hPOTS and I am also trying to work part time,  it is likely to be slow going in getting things posted.  If you have any form of POTS, you will understand why that is.  If you don't, it's because POTS is a disabling illness with a wide array of symptoms of continuous fatigue, dizziness, low or high blood pressure, syncope, or pre-syncope, anxiety, nausea, and many, many other issues. It is completely disabling at times and is unpredictable in its severity which ranges from extreme to somewhat manageable.  It is a terrible life altering condition.  My goal is to share my own experiences with particular focus on the hyperadrenergic form of POTS, collect resources, and to let other hPOTS sufferers know that you are not alone!

Have patience in the speed at which I get this going.  I look forward to creating it and to hopefully connecting with other hPOT-ters soon!