Thursday, July 26, 2012

Parenting From A Bed; Grief, Guilt, & Gratefullness

My daughter is 11 months old today.  She is a  gorgeous, bright, happy baby - granted who doesn't sleep very well - but she is such a joy during the day we forgive her :)

My son is 4 and half now.

My husband just left for the movies with my son, after taking him to get a haircut this morning.  When he left, my daughter started screaming, because she knows when she is stuck with Mommy watching her, we are confined to a bed, and she has to play with me here, or in her playpen set up next to the bed.  She is walking, and wants to run around, be held, picked up, and allowed some freedom to explore.

She knows that Mommy can't give her that, and so she now cries for a bit when she is handed off to me.

My son is a bit different, he was 2 when I became sick to the point of being bedbound and losing my day to day "normal" functioning.  I was gone for 9 months in the hospital and almost died while pregnant, and he remembers.  He is also older, and loves Star Wars (thank God), so he loves cuddle time with Mommy in bed either doing crafts, reading, or watching movies.  But he also knows that something is wrong, and that Mommy is not normal, and doesn't quite understand why I can't make it upstairs to his roo. He was very upset last week when the medical transport ambulance came to take me to the dentist, and still calls out for me every time he gets home - because there were so many times he came home and I was gone, sick again, back in the hospital.

It's been 11 months since I came home from my long hospital stay, and yes, things have gotten better.  My lungs feel much better (most of the time) and I can now tolerate longer conversations and visits.  I can stay in my reclined wheelchair and eat dinner at the table with my family a few nights a week.  My walking has improved and I feel a bit stronger, and for that I am grateful.

But I still can't carry my baby girl.  I have never taken her and laid her down in her crib.  I have never given her a bath.  When she wakes in the middle of the night, I can't help her, because I am at my worst, and can barely sit up.  I  have never left the house with her to do anything. The playground, a doctors appointment, a playgroup.  Nothing.  And now she is almost one, and won't be a baby for much longer.  So I grieve.  I have missed her time as a baby.  I have spent it with her in a bed, or watching her on videos my family makes of her outings. 

With my son there is guilt.  Massive, crushing guilt.  I am no longer who he depends on.  While I was away in the hospital, his Daddy (my husband) thankfully stepped up and took care of him.  I have never taken him for a haircut, or seen a movie in a theater with him, or am the one he runs to when he is hurt, because he knows Mommy is hurt as well, and he can't always rely on me.  We just moved back into our house, away from our temporary apartment near the hospital, and the master bedroom takes up the entire upstairs.  We turned it into his room because my blood pressure and heart rate do wonderfully un-fun things on stairs, I can't handle them yet, even on my butt.  There are 15 of those suckers, and they are my Everest right now - blocking my way to spending special time with my son. No tucking him in, being able to stay home alone with him.  He asks every single day if I am feeling well enough to come see his room.  And every day I have to say no.  I am suffocating under the guilt and sadness of this simple act being taken away, no more going to my son's room.

I write this not to share a "woe is me" tale of how depressing life is.  Quite the opposite.  I know there are others out there dealing with the same, and that can relate.  Through this incredible grief and guilt over what has been lost to my health conditions in terms of parenting and my abilities as a Mom, I have learned just how damn strong I am.  And just how strong the other parents and people with chronic illness are that I talk to each day.   And I have learned just how much I have to be grateful for though this entire experience.  I no longer take for granted little things that most people don't think about when going through their daily lives.  

And I am alive.  This may sound cliche or trivial, but when you have come close to dying as I did with the massive amounts of blood clots and pulmonary embolisms I had, it means A LOT.

A week before I had my daughter, I was hooked up to the baby monitor at 3 AM, in agony having what I hoped were real contractions so we could get the show on the road.   When you spend 9 months in a hospital, you get to know how a hospital works, and become friendly with the mostly amazing nurses, tech's, and staff that are there.  So when a code sounded over the PA, I knew what it was.  I heard the footsteps running down the hall and shouting going on.  Then another code sounded calling all hands on deck to the surgical room in that wing.  A few hours later when the morning rounds were made, I learned that a fairly healthy 24 year old woman died 8 hours after giving birth to a perfectly healthy baby, bleeding out for an unknown reason, dying while her husband held her hand on the table in the operating room.  This is only one of many stories of loss, death, and suffering I heard while there.  Whenever I get stuck on what I can't do with my kids, I remember that Mom.  I have no idea what her name is.  But she was only a Mom for 8 hours.  I'm very lucky and blessed to be here at all for my kids, even in this condition.

I will get better.  I know this.  I believe it.  I plow through each day of sucky health by focusing on my family and helping others, and pushing my hardest to challenge my physical limits.  I remember that I had a childhood, wild and crazy teenage times, and have done a lot in my 30 some odd years.  There are many kids with this condition that are missing out, and my heart breaks for them.    But I believe they will get better too.  What do we all have left if we lose that belief?

So I grieve, I feel guilty, and I am grateful beyond words.  What a combo.  My kids know that I fight for them, and one day when they are older they will understand why Mommy couldn't go to the park.  For now I will keep trying to enjoy the time I have with them, even if its playing in bed, or snuggling when I can barely move - because they know that they are loved.  And some day's that's all I've got.

And it's enough.    

Thursday, April 19, 2012

Let's hear it for Costco! (This is just mind-boggling!)

Costco - A MUST READ

This is an email I received from my father, and I verified it via the source above.  For all of us spending a FORTUNE on prescriptions, this is pretty unreal!

Let's hear it for 
Costco! (This is just mind-boggling!)

Make sure you read all the way past the list of the drugs. The woman that signed below is a Budget Analyst out of federal Washington , DC offices.

Thursday, March 22, 2012

Super Broccoli Man Cures POTS! (I'm on a video making kick)

Friday, March 16, 2012

My Guest Post on Living With Bob (Dysautonomia)

Monday, 12 March 2012

No Need For Padded Walls: Staying Sane With Chronic Illness

Guest post time: After yet another unsuccessful attempt at scheduling posts here's hoping third time is the charm. For those who sent well wishes, big thanks and love to you all. My youngest made it through surgery and is now sporting a rather fetching, if fetid full leg brace. It's been a looooong week and a half and my exhaustion is at a point where I'm not really sure if I'm awake as I type. Fingers crossed this isn't a bizarrely bland dream and I am actually managing to get this posted. Or if it's a dream, a shirtless Jensen Ackles will soon be in too give me a back rub and make me margaritas as I type.

Either way I am still down for the count, so the guest posts will be rocking out for a while yet, whilst I try and nurse my body back from death warmed up, to death slightly more warmed up.

First up we have the fellow scifi geek and all round rockstar after pointing me in the direction of a Firefly themed Pintrest board, Claire Foust Martin. Claire is a "scuba diving marine biologist turned floral designer, turned chronic illness ass kicker. Mom/wife/blogger & fighter for patient rights for POTS & Dysautonomia". She can be found regularly blogging at STOP POTS Virginia, and her personal blog Bye Bye Bella Flora

 No need for padded walls: how to stay sane with chronic illness. 

Fourteen , count 'em - FOURTEEN - months either at home or in the hospital/doctors offices for me, with no social outings.  And I'm not the only one, or even close to the one with the longest record of time spent indoors.  I had been feeling a bit overwhelmed by the lack of outdoor time, and constant focus on my illness, my kids (with no break), and searching for ways to get better.  Life is about balance (insert "oooommmm" yoga zen breathing pause for effect here).  Even if you are not completely bed or home bound such as myself, you may be severely limited by your illness, and going a bit bonkers being indoors more than the average healthy person, not to mention being sick.

So how the hell do we all stay sane?  I REALLY want to avoid the padded walls of a psych ward, even though the padding wouldn't do much good - as I can't walk far enough to run into them.  Padding on the floor would be great though, in case of random face planting incidents. And as sexy as helmets can be - I'm trying to avoid those too.  But just in case, here are a few stylish options, for those of you that unintentionally share my love of hugging the floor and have a fear of the sharp hard edges found in bathrooms:
Pretty bike helmets...but kind of boring.

Bobba Fett's helmet, which I prefer - mainly for dramatic geek effect if found on the ground by anyone.

The MEGA NERD and hostile option - a Cylon helmet, with a pointy menacing looking top to impale obnoxious medical workers.
So here are a few tips to finding some balance, avoiding the padded walls, padded bed railings, various helmets, or being strapped down in a straight jacket for going nuts from the isolation and confinement of chronic illness:

1. Get online and find support.  This has been the biggest help for me - finding facebook groups, blogs, twitter friends, awareness groups with forums - and start talking and meeting others.  Just knowing you are not alone is amazing.  Many groups (including my site, STOP POTS Virginia, and the non-profit I am involved with, The National Dysautonomia Research Foundation) are starting up Skype meet ups.  Skype is free, and allows you actual face time with other people with your illness.  POTSgrrl recently did this very successfully as well.  Our Team Fight POTS Facebook page is also an easy tool to find online resources, and features many excellent bloggers and links to other pages.

2. Of course there are the standard reading, TV, and movie options - I find that I have become completely burnt out on TV, so I take days and marathon my favorite movies and shows that I have on DVD.  They are usually on in the background as comforting noise.  Hearing "Take my love, take my land, Take me where I cannot stand, I don't care, I'm still free, You can't take the sky from me."  relaxes me and if I need to lay back from whatever I'm doing, I know that Captain Tightpants is gracing my TV while I take a break. (This is a Firefly reference for you un-nerdy folk). 

3. Help others. In my current state, I feel like I am taking and taking and taking - and not doing much giving. Relying on others constantly for support is a real ego blow, and makes that whole "productive member of society" thing kind of tough.  Start a blog, volunteer online, post dirty pictures for poor lonely soles...wait...don't do that, but - you get the idea.  Finding a way to feel useful and helpful to others is proven to increase self esteem, take your mind of yourself and your illness.  It always reminds me that there are many people WAY worse off than myself.

Star Wars peg people!
4. GET CRAFTY.  My hands aren't working too well these days, and I know many other dysautonomia peeps deal with the same thing (and all the other muscle affecting, flaccid finger inducing illnesses do as well).  This has been tricky to figure out - but Pinterest has become my new best friend.  There are loads and loads of links and pictures of crafts on there - and I weeded through many to find some that will work from bed, are cheap, and I can do while my infant is sleeping, that I also can put down and easily start back up when I feel well enough.  I am embarking on painting peg people, and can't wait.  I plan to make Storm Troopers, Jayne with his famed hat, a few Superheros for my son, and maybe a fairy or two for my daughter.  Definitely Princess Leia for my daughter though - have to start her young (she's 6 months old).  And maybe a soccer player for my husband. I'm WAY to excited about these peg people, but that's the point.  You may even get crafty enough to open an store and sell your goods, or sell them and give part of the proceeds to your favorite charity.

5. Get dressed, put on some make up, and maybe do something wild and crazy to your appearance.  I just dyed my hair a crazy shade of maroon (it was supposed to be purple-ish, but my hair had other plans). The act of dying my hair left me bed ridden for days, but was totally worth it.  Since I am no longer working in a professional environment, this was my middle finger in the air rebellion at commonly accepted hair colors.  It may seem lame, but really was empowering. I love it. And everyday I am able, taking the time and expending the energy to put on real clothes, and maybe even some makeup - even if I'll just be laying around the house makes me feel less sick and more "normal".

I'd like this little nook somewhere in my house.
6. Last one!  Make your environment the most comforting to you as possible.  If that means you are stuck primarily in one room, try to get help, or do a little every day, to make it the best, happiest, coolest, or whatever adjective works for you - place possible.  Some people like zen, some like organized, some like lots of greenery.  Make your favorite or most used space (indoors or out) the most happy place you can, so you can literally go to your happy place.  I love color, plants, and things to be organized.  I had to explain to my husband why the chaos of having drawers left open, or things not in piles drives me nuts.  And I need to be as un-nuts as possible, and boy is he is on board with that.   We are moving back to our old town home that we own (and can paint), and our bedroom will have bold colors on the walls, because they make me happy.  The white walls of our rented apartment near my hospital have been tough, as I HATE white walls. So they are covered in pictures and colorful things for now, and we keep the room neat and organized.  It makes a huge difference for me.

Do you have any tips to help others stay sane while battling chronic illness?  Post them below!  Would love to hear your suggestions.


Tuesday, March 6, 2012

Medical ID Options/Links

So I have been chatting with my husband about what to tell the paramedics if they show up and I'm unable to talk.  But it's a lot of info!   And what if I'm alone with the baby?  This terrifies me, especially in light of all the recent new allergies I seem to be having (MCAD anyone???). 

I've been searching companies that produce ID bracelets and such, so here is a brief listing for those of you that may need one.  Even if you just have food allergies - these can save your life!

FREE/Templates/Cheap Options:

Free Medical Emergency Information Alert Card

A pretty way to wear your ID: 

If you really want to get fancy, a USB customized with your records and info:
MedID Card Personal Health Record System

Review: 911 Medical ID Card features USB connection, fits in your wallet

Hope that helps!

Thursday, February 16, 2012

On The Dark World...Of Valentine's Day Flowers

The Dark World… of Valentine’s Day Flowers

There is a secret world, a dark world.

A world shrouded in mystery and deceptions, lurking in the advertisements you see, hear and read.  The images forced upon you leading up to the most simultaneously loved and hated day of the year–Valentine’s Day. That world (dramatic pause) is the world of corporate flower sales.
Corporate flower sales? Really? Doesn’t sound too controversial, or mysterious, or even interesting. But these “big dogs” are ripping off unbeknownst consumers and shutting down local businesses in greater numbers each year.

Sunday, February 12, 2012

The Dysautonomia Dementors and POTS Patronus

I love Harry Potter.  I love the books, I love the movies, I love the brilliant world created by JK Rowling.

My life right now is pretty consumed by POTS and Dysautonomia, so I find myself making comparisons and analogies everywhere I look.  Which is actually not many places, considering I am home bound at this point - but does involve lots of movies, online stuff (no porn of course- I swear!), and books.

So when I last watched Harry Potter and the Prisoner of Azkaban (while in the hospital), which is when we first see the Dementors, I burst into tears.  I saw that dark black ghostly scary looking thing sucking the life out of Harry and them him passing out with the screaming noises in the background - and all I could think of was how that was how I felt day in and day out.  That was at the height of my "dark times", but I think many people struggling with dysautonomia and other life force/energy-sucking diseases can relate. POTS, Dysautonomias, CFS/ME, Fibro, Lupus, people going through Chemo, RA, any of the "spoonie" illnesses - we all struggle with days when the Dementors swoop in and gobble up every last bit of energy, happiness, and the ability to move and function.

Times like these, I usually have "overdone" it the day before, or even a few hours before - and it all catches up with me and my body shuts down.  Literally just stops working.  And overdoing it (in my current state) involves playing on the floor with my son for 20 minutes, or wheeling into the kitchen and standing up enough to make coffee, or rocking the baby for 30 minutes while in bed when she's fussy.  Showering is the real "Dementor's kiss" of death for me - warm (no hot allowed!) water causing vasodilation (veins dilating) coupled with arms raised above heart level to wash hair making my heart rate faster equals total body shut down.  I have to plan my showing carefully.

This body shut down - or the lifeless I've-been-attacked-by-a-Dementor feeling is pretty unreal.  I've never had it this intensely before, even after all these years of dealing with POTS.  I will literally feel it coming on, know I need to be laying down, and then my muscles stop responding and working.  Then I start shaking. Its an internal shaking feeling as well, similar to adrenal surges, all wrapped up in a nice ball of pain.   All I can think of is how I must close my eyes, must sleep, and hope I wake up with a body that responds again. I then pass out and sleep for a few hours, or lay in a semi-conscious state. Just like Harry.  Except I think he woke up faster, and chocolate helps you recover from Dementors.  Oh, how I wish chocolate would fix this with me!

This ties in with the whole Spoon Theory; having to delegate your energy to avoid this horrible crash.  My (and other "spoonies") life revolves around picking and choosing what activities to do for that day - and everyone has a different tolerance level.  I used to be able to work 16 hour days, or push through making flowers for 5 days straight over Valentine's, but would get very sick and need to recover for days after.   Now it's only one to two activities a day keeps the dysautonomia Dementor away.

My POTS Patronus (the spell that creates an animal Harry and the others use to defend against the Dementors) is currently an Octopus.  No particular reason except that octopi are super cool, and I'm a marine bio geek.  They are the smartest of the cephalapods (squid, cuddlefish, octopus, etc...) and mimic their surroundings to avoid prey animals.  They have 8 legs to get things done - so I'm assuming they are multitasking type-A non-stop workers like me.  I want that back - the ability to act physically the way I feel mentally - and get up and move again to get things done.

What's your POTS (or other Spoonie) Patronus?  Why? What do you do to avoid the crashing Dementors Kiss?  I'd love to hear!


Sunday, February 5, 2012

Get Edumacated! 5 Worthy Causes in 2012

Get edumacated in 2012!.  

Oh, and maybe pick a cause and get involved too. 

I'm a little late posting this, my health and getting my other projects up and running caused some delays.  But it's only February, so there's still plenty of time to do something to help someone else out this year, and make a difference. 

1. This is totally self serving, but the only self related topic on the list (I promise!). I have a chronic illness called POTS, part of a larger family of diseases called dysautonomiaNational Dysautonomia Awareness Week in 2011 was Sept. 12-19th, and I didn't even know about it!  2012 will be different.  We HAVE to get doctors and the general public edumacated about this extremely disabling disease - it is thought to affect over a million people in the US alone. That is too many for so few people to know NOTHING about it. There are ZERO neurologists in Hampton Roads (population ~1 million) who know/deal with it. Sucks for me.  There is lots of promising research going on, but with only a few institutions involved.
What you can do: Spread awareness! Link back, re-post, whatever it takes. Or, donate to the National Dysautonomia Research Foundation. I started a site called STOP POTS Virginia, and have teamed up with other bloggers to raise awareness at Team Fight POTS.  Follow us and spread the word!

2.   The hunt for dolphins in Japan's Taiji Cove is on.  20,000 dolphins are killed annually in this secluded cove in Japan.  Japan is a huge broker of dolphins for entertainment, and dolphin (and whale) meat is a popular delicacy there.   Dolphins are herded into the cove, where a few are picked out to be sold (usually for $30k plus each) to zoo's, theme parks, and "swim with the dolphins" programs. I won't comment on the value (or harm) of captive dolphins used for education here, that's a whole other post. But, the remaining members of the pod are all killed.  They are family groups, animals with higher intelligene, and the only other animal besides humans known to have sex for fun. They are beautiful, amazing, and deserve our protection. And they are not just killed; but drowned, beaten, shot, and all around slaughtered.  It's brutal and I was shocked to read more about it. 
What you can do:
Stop the Senseless Slaughter of Dolphins in Taiji, Japan! Support the Sea Sheppard Cove Guardians.
There is a ton of info on their site, and links to resources.   Feeling a bit more extreme? Boycott Japan's products all together, or tweet the prime minister directly
Cove Guardian Reports

3. SOMALIA and the famine in East Africa: The entire time I was in the hospital, and started feeling sorry for myself, I chanted (in my head) "I don't have cancer, and I don't live in Somalia". In Summary, according to Amnesty International: "Armed conflict between armed Islamist groups and pro-government forces continued in southern and central Somalia. Thousands of civilians were killed or injured as a result of indiscriminate attacks and generalized violence, and at least 300,000 were displaced during the year. Access by aid agencies to civilians and the displaced was further restricted by armed groups and insecurity. Humanitarian workers, journalists and human rights activists remained at risk of killings and abductions. Armed groups controlled most of southern and central Somalia and they increasingly carried out unlawful killings, torture and forced recruitment."
Also - the ENTIRE Horn of Africa is suffering a terrible famine: Kenya, Somalia, & Ethiopia have been hit hard, and children are especially susceptible to famine. 

What you can do:  Read up at Amnesty International, and check out these other sources for info and places to donate: Unicef, Childcare Woldwide, and Wold Vision.

Linda Norgrove
4.Get involved with women's rights in Afghanistan, and other war torn regions.  We think we have it rough in this counrty - and yes, the system isn't perfect (women get paid 25% less than men on average for the same positions in the workforce).  But we have RIGHTS here, and in many parts of the world women are viewed as second class citizens, and have very few rights, opportunity, or the option to even get an education.  My brother is very involved in Central Asian politics and relations, and through reading his articles I have discovered some inredible organizations fighting for women in war torn areas.  The Linda Norgrove Foundation "is a new grant-giving trust that provides funding for women and children affected by the war in Afghanistan. The Foundation provides help in the following areas: education, health, childcare, including orphanages, widows, who make up 1 in 5 of the adult population."  The foundation was set up in memory of Linda Norgrove, who was a devoted aid worker in Afghanistan that was kidnapped and killed, and sounds like an amazing woman.  You can read more about her and what the foundation is doing at their website.
Another great organization to get involved with is Women for Women.Org. "Since its creation, Women for Women International has given hope to more than 299,000 women survivors of war and conflict and helped them move toward economic self-sufficiency with our year-long program of direct aid, rights education, job skills training, and small business development." Go to their website to see how you can help - this is their program model:

5. Hookers for Jesus.  That's right - HOOKERS FOR JESUS! I saw a retweet by this group, and thought it was a joke.  I ended up reading their website from top to bottom, I was so enthralled by the founder Annie's story, and what they do to rescue women from the slavery that is prostitution, focused in Las Vegas. "The primary services and programs of Hookers for Jesus are mission driven and are designed to minister healing and restoration of individuals and families affected by sexual exploitation. The primary services of Hookers For Jesus is to Hook (Outreach), Heal (emotional & spiritual restoration) Help (Transitional Assistance) through the Destiny House program." Hook, Heal, and Help.  I love it.  They are providing safe homes for men and women, they patrol the streets of Vegas looking to help prostitutes, and do many other incredible things to save sex slaves from their captors.   Go check out their site and find one of the many ways you can get involved in this very real problem that exists today.

Thursday, January 26, 2012

Visit with a DOCTARD! Brilliant!

I love this!  So many of us with under-diagnosed illnesses go through this.  I am going to stop saying POTS is rare - because more people have POTS than MS or Autism.  Our doctards need to become DOCTORS and get educated!

Sunday, January 22, 2012

An Open Letter to All Doctors (Regarding the Anxiety Bias)

Dear Doctors:

I am a female.  I have an illness.  Because of many of your biases towards young women, women in general, and POTS (Postural Orthostatic Tachycardia Syndrome) sufferers, my illness was blamed on anxiety for many years.  This not only happens with my particular illness, but with many lesser known and rare illnesses.  I am not only speaking to you male doctors who are guilty of this, but the female doctors as well - who have been just as condescending and dismissive as their male counterparts.

My illness is categorized as a dysautonomia. My form of dysautonomia includes POTS (Postural Orthostatic Tachycardia Syndrome), and a few others that I am now finally being tested and treated for.  It has been an almost decade long journey, and because of this "anxiety bias", I am just now getting the correct testing and treatment.  I had to let my illness progress and be so sick that I was hospitalized for almost nine months and almost died for most doctors to take me seriously.   When I first came to you for help, I was experiencing REAL symptoms.  I have no history of anxiety, depression, or any mental health illnesses.  Though - even if I did, you still should have listened to me.

After the first few years of being told I had anxiety (even with a positive Tilt Table Test for POTS), I had read the medical journals and literature, and self diagnosed myself with dysautonomia.  I brought this information to my internist and he agreed with me.  He sent me on to find treatment from doctors he thought could help me.  Unfortunately, I was told bluntly, "If you really had dysautonomia, you would be dying the hospital," and , "you just have anxiety and panic attacks, " and - my favorite - "you are just going to have to learn to deal with being dizzy and your heart racing, it is just anxiety."  These are exact quotes, all from local Neurologists, who I have found to be notoriously unhelpful, degrading, cold, and unwilling to help find the cause or treatment for my symptoms.  I have seen 8 local neurologists, who have all either dismissed me, or have told me, "I don't want to deal with you, dysautonomia is too complex, and I don't know anything about it."  These things were said after I had a positive Tilt Table Test, the standard for diagnosing POTS.

Many of my daily symptoms are similar to those of anxiety.  Anxiety responses are controlled by the same nervous system that is malfunctioning in me.  This is an except from the journal article Postural tachycardia syndrome and anxiety disorders  (by Svetlana Blitshteyn, Clinical Assistant Professor of Neurology, State University of New York at Buffalo School of Medicine and Biomedical Sciences):

"The results of the study demonstrate that patients with POTS do not have an increased prevalence of anxiety disorders compared to general population, thereby challenging a common misconception that patients with POTS are more likely to have anxiety disorders. The study by Raj et al. is in agreement with two other studies that differentiated POTS from anxiety disorders. One study showed that excessive heart rate response during a tilt table test was not due to anxiety (2), and another one demonstrated that symptoms of POTS were phenomenologically different and clinically distinguishable from panic disorder symptoms (3). Taken together, the three studies provide evidence against a hypothesis that POTS and anxiety disorders are linked either by association or causation. "

I have a release of norepinepherine (adrenalin) in response to my blood not staying where it is supposed to, and pooling in my extremities and abdomen, therefor dropping my blood pressure.  The release of norepinepherine and catecholemines in an effort to cause my vessels to constrict in POTS itself causes anxiety - through sympathetic over activity among other things.  Even changes in blood flow in the heart can result in feelings of fight or flight. Since anxiety, panic and POTS all involve the same branch of the autonomic system, the feelings are very similar.  But the test results do not lie.  I had a positive tilt table test back in 2003, and it was ignored on many occasions.  I was dismissed by many of you, especially Neurologists, and told I couldn't possibly be as sick as I was feeling, and that it was all in my head or due to anxiety.  

Throughout the almost decade of you giving me blank looks, telling me I am just having anxiety, and being forced to try medicines for depression and/or anxiety that I reacted very badly to, I have in fact, developed secondary anxiety (which I was diagnosed with in 2006 as being secondary as a result of my medical conditions).  I was not listened to in the hospital in 2011 when I had been diagnosed with 5 DVTs from the negligence of a PICC line, and I was having severe suffocating chest pains.  I was told it was "just my POTS and anxiety".  After a few days and trips back to the ER, the doctors involved finally discovered I was having multiple bilateral pulmonary embolisms, and had a 2 cm blood clot in my right atrium.  I knew something was wrong, but you did not believe me, and it almost killed me.  I also have a chemical intolerance, and react very strangely to many pharmaceutical drugs, and the reactions can be scary.  I have developed random reactions to foods and other allergens - for which I am now being tested for Mast Cell Disorders (another rare and under diagnosed group of illnesses), but once again, I was told I am over-reacting and anxiety is to blame.  I have told you about this time and time again, and am very rarely listened to.  The combination of these issues: POTS, frightening reactions to medication, anaphylactic reactions to allergens, and almost dying last year, have in fact caused me great anxiety.  I think they would cause YOU great amounts of anxiety as well.

According to an article published in The Journal of Neurology and Neurosurgical Psychiatry by Raj et al, "Patients with postural tachycardia syndrome (POTS) often appear anxious and report inattention. Patients with POTS were formally assessed for psychiatric disorders and inattention and compared with patients with attention deficit hyperactivity disorder (ADHD) and control subjects."

The results and conclusions of the study:
"Results: Patients with POTS did not have an increased prevalence of major depression or anxiety disorders, including panic disorder, compared with the general population. Patients with POTS had mild depression. They scored as moderately anxious on the Beck Anxiety Inventory but did not exhibit a high level of anxiety sensitivity. Patients with POTS scored significantly higher on inattention and ADHD subscales than control subjects. These symptoms were not present during childhood.
Conclusions: Patients with POTS do not have an increased lifetime prevalence of psychiatric disorders. Although they may seem anxious, they do not have excess cognitive anxiety. They do experience significant inattention which may be an important source of disability"

I am not the only one. Time after time, women, POTS sufferers, people with rare diseases, and younger girls are told anytime they have an elevated heart rate, blood pressure issues, or random unexplainable neurological or autoimmune symptoms that they are just stressed out, have anxiety, or in the case of the New York teens recently in the news - mass hysteria.  Anxiety is a real disorder and issue for both men and women, and must be investigated - IF NO OTHER CAUSES FOR SYMPTOMS ARE FOUND.  The causes must be tested for first, not just blamed on anxiety.  Patients experiencing sudden onset of panic attack like symptoms should not be dismissed, and should be thoroughly evaluated for POTS and a number of other illnesses and disorders.  If you are incapable of testing for these things, please send your patients to a specialist who is experienced in dealing with them before dismissing them as having anxiety. 

As a doctor, you took an oath to "do no harm".  The persistent or even occasional dismissal of your patients due to anxiety like symptoms is doing harm.  Being cold, condescending, and unwilling to help guide a patient to the resources needed for them to obtain treatment, is doing harm.   Being unwilling to sit down in front of a computer or your thick medical dictionaries and look up new research relating to your patients symptoms is doing harm.  I have luckily found a group of wonderful new doctors willing to do whatever it takes to help me regain function, but many patients have not. 

I challenge all doctors out there to set your egos aside, and commit to finding answers for your patients, even if it takes a little extra time and work.  It may save them years of suffering and increase their chances of recovering or going into remission.  It may even save their life.  This is, in fact, what you pledged to do when you became a doctor.  So please start doing it.

Claire Martin
Founder: STOP POTS Virginia
Owner: Bella Flora

Wednesday, January 18, 2012

The Year I Spent In A Room Not Complaining (Finding the Amazing in the Suckiness)

SO, in my first post in this now two-parter, I did a lot of focusing on the bad events and painful things going on since my health took a nose dive a year ago.  In all honesty, I feel like a huge weight was lifted in making more public many of the issues with my illness and those events, so it's out there and I don't have to put on a happy face if I'm struggling.  I am usually coping fairly well I think, and most days I'm a happy camper and have accepted my situation and am trying to deal, but there are days when I now allow myself to feel crappy and cry and be upset and I don't feel guilty about it because "there are others worse off".

My day to day life is definitely not miserable, and though I do struggle, I'm usually a pretty happy silly person.  I deal with anxiety and fear by making jokes.  They may not be good jokes, but I like laughing and seeing others laugh, so I try.  Anyone who knows my Dad knows where this comes from, I grew up with an earful or corny joking (see what I did there???).  And my life is truly filled with many reasons to be thankful, many of which would not have been possible without the downward spiral of last year.  I already mentioned my mantra: "I do not have cancer. I do not live in a hut. I am not in the Congo. I have insurance." and I repeated things like that multiple times a day, sometimes hourly.  And they are true. And they kept me grateful, and sane (kind of sane at least) through most of this whole thing.

But the most incredible thing to come from this whole experience is my daughter.  She is our miracle baby, in every sense of the cliche phrase.

Wednesday, January 11, 2012

New Virginia Support Group - STOP POTS Virginia!

Due to the complete lack of local resources, I have started a group called STOP POTS Virginia.  If you are dealing with dysautonomia and or POTS in VA, or elsewhere, please connect with us!

My goal is to provide tools for patients when dealing with doctors and medical professionals who do not know about POTS and Dysautonomia. Find tips, resources, and ideas for keeping your sanity and getting the treatment you deserve.

On Facebook: STOP POTS VA page

See all the pots? Get it? 

I have big plans for launching an awareness campaign aimed at doctors, schools, and the general public (through media and literature) so others do not have to go through what I have.  I have had POTS for almost a decade, and am just now starting to find doctors willing to hep me find out why. Not acceptable!  There are too many of us out there looking for answers, being misdiagnosed, and treated like we are nuts - all because of ignorant (but sometimes well meaning) individuals. 

If enough people connect, may start a closed Facebook group for VA folks, let me know if you are interested.  Hope to hear from you! 

Monday, January 9, 2012

How (not) To Open a Business in Norfolk: A Story of Lofty Dreams Gone Bad

This is a short version of why I had to close one of my businesses (I was a partner) that was in the start up phase.  I truly believe if my partner had not been left to deal with the mountain of work on her own while I was laid up in the hospital dealing with POTS, clots, and pregnancy - we may have had a different outcome.  With two of us working on everything, we may have been able to do some of the things I mention in the article since she wouldn't have been overloaded with the mountain of work and the coordination needed to get something this big off the ground. But, as always, things happen for a reason, and it was not meant to be.

I'm hoping to provide some "lessons learned" and tips that can be applied in any City/State when opening a business.  Enjoy :)

How (not) To Open a Business in Norfolk: A Story of Lofty Dreams Gone Bad 
Published on

How (not) To Open a Business in Norfolk: A Story of Lofty Dreams Gone Bad

My former business partner and I had found a location, an investor, and had gotten to work opening a loft on Granby to hold events.

I should be exhausted right now after a weekend full of events. But I’m not. Our business never had the chance to get off the ground.

What we should have done, and what you should do if you are opening a business in Norfolk:

1.  Go to SCORE for free mentoring.  Anyone starting a business needs to make the trip to their website and set up an appointment. We had it on our to-do list, but were both running two businesses at the time, and kept putting it off.  Make this a priority. Look to others with experience for advice and double check that you are doing everything right. Best of all – it’s FREE.  They have everything from business plan templates to financial worksheets. But that is not enough! Go there and find a mentor. They will help walk you through the process, and direct you to the resources you will need.

In hindsight, this alone may have saved our business. My partner and I are very creative people (both designers), with our business experience being limited to a more Mom and Pop dynamic, nothing this big. Once we decided our business location, I had gone online and downloaded a template for a business plan from SCORE and gotten to work. My partner had been researching lofts and area venues while I crunched numbers, and we came up with a plan based on this specific building as our venue. It was perfect! A gorgeous historical building on Granby that had been gutted and revitalized, retained its historical charm, and renovations were made to order for tenants. They showed us a top floor, a new addition to the building, and our jaws immediately dropped (mine almost dislocated). Views of the entire skyline of Norfolk and the water! Glass walls! Exposed loft style ceiling! NOBODY had a location like this.

A view to build on.
My heart pounded and I tried to contain my need to do a happy dance in front of the men in suits. They were willing to remodel it to make it work for us, and assured us that if we could find the money, they could make it happen. Then the words “roof-top deck” were uttered, and – well – I almost passed out. Being able to have your wedding, or an art show, or listening to music, all while sipping a cocktail with a killer view from the roof through glass walls on cool mod furniture??? YES PLEASE.

So we started negotiating with the developer and realtor, and coming up with ideas. We had a solid 50 page business plan that I ignored my family for about 40 hours straight one weekend to compile. We found an amazing investor after shopping around for anyone willing to back us. We thought we were doing it all right. But we never made the trip to SCORE.

2.  Go to the City to Norfolk Directly to verify what is required in terms of building codes, permits, and any other bureaucratic issues that may need to be cleared before opening.  This applies for any industry and any size business. Find them here. Our landlord/developer claimed to be “in” with the Norfolk City people, and owns a few dozen properties in the area, which we researched and verified, so we believed what he told us.

We worked out the details, had meetings upon meetings, contacted local groups, businesses, community leaders, and press. We held an open house and polled past clients and colleagues about the space. Everyone was super stoked, our “Urban Chic” design for the space was pretty amazing (if I do say so myself), not to mention the kick ass rooftop deck. The landlord assured us that all permits were in place, and all the kinks had been worked out. We had hired a lawyer to review the documents, and thought we were on our way. This was a big mistake, and ultimately the downfall of our business.
Let me repeat: Contact the City directly, with the help of a mentor from SCORE.

3.  Document everything. And I mean EVERYTHING. Every meeting, every promise made, every bit of progress made on the project. Take pictures, write things down, record meetings, do whatever you need to so you have proof if something does not happen the way it was supposed to. We documented some things, but not everything. We had built a friendly relationship with everyone involved over the course of a year. That is *not* enough. You need to resort to the good ol’ adage of CYA (cover your ass). Especially if your livelihood is on the line.

4. Build flexibility into your business. In our specific case, we modeled our entire business around the location, because we loved it so much and knew others would love it too. Before selling, promoting, or buying anything for your business, make sure you have tied up all loose ends and have completed the aforementioned steps. Our business model would not have worked in any other location due to its uniqueness, and this proved to be an insurmountable issue. Have some flexibility in your plan, in case bumps in the road come up, because they will.

5. Have a back up plan. If your business consists of just you, or is a partnership – have a back-up plan in case health issues, family issues, or something catastrophic occurs and you are unable to fulfill your obligations. Unfortunately, right after the papers were signed, and after we had started booking weddings, advertising, and buying stuff, I ended up in the hospital with an extremely high risk and unplanned pregnancy that almost killed me (due to Pulmonary Embolisms and a disorder named POTS that is normally very mild). I was in the hospital until the baby was born, almost the entire 9 months. I was there for and orchestrated much of the start-up phase of the project – but completely left my partner out to dry after construction really kicked into high gear. She did an amazing job taking care of the business, and dealt with the logistics of the construction, booking events, and purchases – and at every step was assured that all permits were in place and everything was fine.

Then, out of nowhere (with me still in the hospital), she was informed by the developer that our capacity requirements were denied by the City… that he had gone to his 5th and final meeting to try and get the capacity limit increased, but the City wouldn’t budge.

Would have been nice, eh? (Pic | Andi Grant)

WHAT? We were flabbergasted. With a capacity limit of 50, we couldn’t hold any events. Our business was done. We had some back and forth with the developer, and unfortunately it was not a fixable situation. It was horrendous – our dream business that we had sacrificed so much for, lost time with our families for, and had grand dreams of being our big break– was suddenly finished. Now we are stuck with a whole lot of wasted time, lost money, and useless marketing materials. I was really looking forward to those nights on our rooftop deck, drinking hipster drinks, listening to the latest electro-indie, ambient house, dubstep, live jazz, and whatever else. I wanted to see the local charities, designers, and artists host their shows with our City skyline as a backdrop, and amazing sunset views from the roof. I wanted to help design unique weddings and create memories for local couples…
But it was not meant to be. The sad thing is, if we had known about the issues with the Norfolk codes, and had a mentor, we could have rallied the troops, and used our connections in the community to find a solution. So learn from us, and somebody please open a loft I can go drink hipster adult beverages at while listening to cool music ASAP.

Help the AltDaily business continue. Please considering giving.

Friday, January 6, 2012

The Year I Spent In A Room Not Complaining

So today marks the first day a year ago that I became seriously, life changingly ill.  I was ill before, but it was manageable. But this day last year my entire life changed, and it has not been pretty.  I debated whether or not to publish this, I've been writing it for a few days as this date loomed, but I know there are others dealing with these same issues, so maybe it will help someone.

The Year I Spent In A Room Not Complaining

My son and I snuggling with a bag of chips.
Not to be a downer, but I have to say that 2011 sucked majorly. But it also brought great joy, and I have tried to focus on that as much as humanly possible.  The birth of my daughter was nothing less than a miracle, and she is healthy and thriving.  I have an amazing family.  I have tried to remember how good I have it compared to the majority of the world, those living in harsh conditions in third world countries, people with terminal illnesses, the homeless, etc...

But really, I have been worn down by the events of this past year, and my current state of health.  And the fact that my only outings from beyond the four walls of a room have been to see doctors.  I have spent the entire year either in a hospital room, a bedroom, or on a good day - a living room. I've been on our balcony 4 times. Needless to say the four wall situation is closing in on me and had gotten old a long time ago.  Putting on a happy face and being fairly silly and upbeat is my natural tendency, not in a fake way, but because I usually really truly am grateful for my life and everyone in it, and I enjoy trying to make others laugh. But this has been the trial of a lifetime, and I have had to fight with every ounce of my being to stay sane, let alone positive.  So I am tired.  Physically, mentally, spiritually, and emotionally.