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...