Thursday, September 30, 2010

Wish List

You know ,when you develop a chronic illness,whether its Dysautonomia,POTS,Lupus,RA,MS,or countless others,and you become ill you think about the good old days.I discussed this with my best friend Ash the other day,and we both agreed that we take so much for granted as healthy people.When you become ill,all those little things we take for granted,taking a long hot shower,standing under the hot water forever,blow drying our hair and putting on make up,cleaning your house until it's gleaming,Taking a long leisurely walk down the road,or pushing your little girl on the swing as high as you can ,driving a car.These are all now on my wish list.Things I am not guaranteed,but things that I wish to have back so bad.It's amazing as a healthy person what you take for granted.I am as guilty of doing it as anyone else.I would push my body and push it even further to do those extra things,now I am just begging to be able to do the things on my list.I want a good family vacation to Florida and Disney World,and I want to feel like walking all over the park,and riding all the rides without being wore out.Good news for me,is that my Propranolol is still working,and I am still taking iron tablets for the anemia,but I believe in my heart that I will be able to do some of the things on my list,and if I am extra blessed,I will be able to do all of the things on my list,once my body recovers from being ill for so long.I think my wish list fills my heart with happiness and optimism that this is not the end of the road for me,but just a curve.

Wednesday, September 29, 2010

The Dr said.......

The Dr Said that 17 hours of sleep is too much(as if I didn't already know that!)He said not to let my son sleep for longer than 12 hours,because when you sleep for longer periods than that it actually depresses your body.He said you need the sunlight,etc.So no more long bouts of sleeping.It seems he is still recovering from this nasty 4 month long bout of mono he has had.The P.E. class at school when he did drills reactivated the virus which had finally quieted down.So,now we're going through the recovery process again.He plans on going back to school next Monday.In the mean time,he is keeping all his homework caught up,and resting ,drinking lots of fluids.It's tough on a parent to see a vibrant young teenager look so sick!He did have a big laughing spell today,and it did my heart good,reminded me the old him is still in there,just recovering from a nasty illness.

As for me,today has been such a great day,the weather is beautiful here,and I feel pretty medicine has definitely made such a difference in my life,I would be scared to ever be without it.It has allowed me to stand for longer periods of time,and my heart doesn't feel like it's going to burst out of my chest anymore either.My blood pressure is a nice 110/68,pulse 70,so I am a very happy girl.I am insightful enough to know that everyday won't be this good,so I am enjoying today,enjoying the blue skies and sunshine,and enjoying the wonderful sound of my son's laughter.


17 hours of sleep!!!

Those that know me well,or follow my blog,know my son is trying to recover from a 4 month long bout of mono,that ate up his entire summer,and it's starting on the school year.He did make it a couple of weeks at school,but then the exhaustion set in and he was lost.He missed 2 days last week,and 3 days this week,with a Dr appt in the morning,to see what is going on with him.I let him rest yesterday morning,knowing he would wake up while I was in town with my mom doing errands....he slept until 2:15 pm yesterday afternoon,going to bed at 9 :00 pm the night before,17 straight hours of sleep!I don't think he has ever slept that long in his whole life!At this point I am very concerned about his health,and if there are underlying health issues involved.This is supposed to be the best time of his life,the carefree fun time.I hate mono,and I hate that this is the second time in 3 years that he has had it.I will update the blog once I get home from the Dr in the morning(ha,it already is the morning)and see what is going on with my # 1 son.

Sunday, September 26, 2010

That 4 letter word M-O-N-O!!!!!

I think in the book of illnesses,Mono must be one of the worst by far.It feels like POTS only worse,and you have a sore throat and stomach and headache to accompany it.My son is currently in his 4th month of trying to recover from Mono.There is no antibiotic or magic pill they can give you for this,it takes bed rest,lots of liquids and avoiding the heat to recover.His summer was horrible,he couldn't go out to ride his bike or go fishing.....he spent it reading books and playing his PS3.I felt horrible ,knowing this was a summer of his life,lost to illness that he could never get back.He still has mono.It seems once he got into school and started taking Gym,that it reactivated the virus,which,for lack of better words was sort of sleeping.Now he is sick again,He missed 2 days of school last week,has slept away almost the whole weekend,and I doubt he will be going back tomorrow.It's a horrible feeling as a parent to watch your child ,whether they are 6 or 13 suffer.I would gladly be ill in his place,any good parent would say the same thing.Sort of makes me understand why my mother asks me two or three times a day how I am feeling .She feels the same way about me as I feel about my son and daughter.I hope every morning that he will wake up and this awful mono will be all gone.I worry,because I first became ill with POTS after a serious bout of mono that I suffered myself.Please tell me God,that this is not something that is waiting for this bright vibrant boy later in his life,it would kill me inside to see him suffer from this same illness.But again,I do look at the glass as half full,and I wear rose colored glasses most of the time,so for now,I'm just thinking he has mono,it's taking a bit to recover from,and he will be back to his normal smart mouthed,quick thinking,fast to laugh ,self.The one that I adore so much.

Wednesday, September 22, 2010

Propranolol,Part 2

O.k. It could have happened to anyone,the pharmacy problem,but yesterday,after I posted how great things are with my new medicine,things steadily declined through the afternoon,enough for me to know how much I LOVE Propranolol,and I don't ever want it to go away!

Seems the pharmacy,due to insurance was unable to refill my prescription for 3 more days.....I was waiting for my prescription to be brought home by Kevin yesterday for my afternoon pill.The Pharmacy and myself both tried to call the Neurologist in St Louis to get the prescription changed.No such luck,you get caught in a web of phone transfers and lengthy voice mails.I was panicked,and as the afternoon wore on,my heart began to pound,the nausea returned,as did the shortness of breath.I hated knowing it was this easy for me to feel horrible again,missing one pill could do this to me......then I had an epiphany(angels singing,bells chimed)as I remembered my old Neurologist said he would be here if I ever needed him for any reason.This was at 4 :00 in the afternoon.I had his nurses direct line,but got her voicemail stating all calls after 3 pm would be returned the next business day.I left a panicked message in tears,telling them the whole situation,and how I needed these pills NOW.I hung up,feeling more disheartened.45 minutes later,Debbie,my former Neurologists nurse called me back and said Dr Mettu had wrote the prescription out,and it had been called in.I wanted to squeeze her through the phone,instead I thanked her profusely.Kevin went straight away to the pharmacy,got my prescription and brought it home,by this time I was laying on the bed feeling horrible.I took my pill,and within an hour or so,I began to feel the pounding heart go away,the labored breathing and the nausea.My old Neurologist was a life saver,while the new one is great,he is from a University in St Louis with a HIGH case load,and just had not gotten around to fixing the problem with my prescription so insurance would cover it.

I now know how much I depend on this little pill,and the fear I felt inside with my symptoms returning so quickly.For now,the rose colored glasses are put in a drawer.I am sure they will come out again when I am feeling more secure about my health.I saw how quickly things with POTS can go from good to bad,and it scared me,just missing one pill.But for right now,no rose colored glasses for me,just Propranolol 80 mg 2 times daily.

Propranolol 80 mg capsules 2 times daily.

I am amazed at how this prescription has in just a few short weeks,improved my life.No,my life is still not how it used to be,and when I look at my old life through the rose colored glasses I so often wear,my old life,before I got sick was just about perfect.I could do anything I wanted anytime I wanted to.I could hop in my car and drive anywhere I wanted to at the drop of a hat.But the prescription Propranolol,has given me the first steps back at a life.I can stand longer without my heart pounding,I walked to the mailbox and back yesterday,and didn't feel like I was going to faint!I think I have learned to appreciate the small things in life now.All the small things I want to be able to do on a daily basis with no fainting,or heart pounding,or nausea.Taking a shower,blow drying my hair,putting on make-up.straightening up the house,baking cookies,making supper,going to the movies.All these things are the things that are my "new" life.Things that I want to be able to do again,and I believe that propranolol has put me on the path to doing those things again.I am so thankful that the first prescription I was put on has worked for me.A lot of my friends have to go through a list of medicines,and even sometimes take a saline IV to control their symptoms.So far(knock on wood)I am doing so well on this medicine,I feel like I am getting better everyday.I am also on iron pills to recover from some severe anemia,so between the two medicines,I feel I am getting stronger.I can't believe a little pill has helped me so much.It makes me want to keep my rose colored glasses on a little longer.=O)

Monday, September 20, 2010


Today is a beautiful early fall day here.It's not going to be hot,the skies are a deep blue.The kids have been packed up and sent to school,I have done my chore for the day,which was 2 loads of laundry(I space all my house cleaning out on a daily basis instead of doing everything in one day,that would take me days in bed to recover from!)So what do I plan on doing now?I plan on getting my coziest blanket,and big soft feather pillow,and laying down for a long nap,sleep until I wake up.Part of me feels guilty,but the other part of me wants the nap so bad it's silencing the part of my brain that wants to go outside.I have learned one very important thing from becoming ill.Priorities.What really matters the most.It kind of goes along with the spoon theory,but it's more about making time for what really matters to you.So,the leaves are not falling off the trees yet,they are just starting to turn color,I think there will be another beautiful fall day I can go out and enjoy,when a nap isn't my number one priority. =o)

Sunday, September 19, 2010

Pity Party!

What a horrible day Saturday was for a girl who tries to stay optimistic and always see the glass half full.The waves of nausea washed over me again and again until now I feel battered and bruised.The only plus,or optimistic thing this positive minded girl can think of at this point is a) My heart rate is so wonderful,and I am not finding myself winded at the smallest activity that I do.Saturday was such a bad day for me,I woke up feeling good,ate some cereal,but around 10:00 I felt it creeping up on me while at Wal Mart.This nausea is the kind that makes you feel chilled,and you don't want to move at all.I got home,and Kevin had made the most awesome B.B.Q. lunch,the smell just made me so sick,I got the heating pad and laid down and slept for 3 hours.I ate some yogurt when I woke up because that's what my body told me it wanted.I'm getting pretty good at listening to what it says or it will make me pay.The only other thing I can  say to add to my pity party is everyone keeps passing the buck when it comes to giving me some medicine to ease the nausea.My family Dr thinks the prescribing Neurologist should change medicines(NO!!!!!!THIS ONE WORKS SO WELL!!!!)or give me something for nausea.The Neurologist wants me to wait until I see the Cardiologist who will follow me more closely since I am on a medicine that is controlling my heart rate and blood pressure.He(the Neurologist)feels the Cardiologist will know what to do.I have even had advice from a dear friend who suggested we fix the problem ourselves.....just not sure what to do,except right now I am a big baby who wants sympathy.Kevin is wonderful,but I think he hears about me feeling unwell so much,its hard for him to differentiate between unwell and REALLY unwell.I don't feel REALLY unwell,just so damn sick in my stomach.So,here I sit at 2 am,attending my pity party.Any of my blog followers,can feel free to attend. It is B.Y.O.N.(bring your own nausea!) = o)

Saturday, September 18, 2010

Most Common Dysautonomia Symptoms

Ever wonder why you feel some symptoms but not others?Its all normal.we are all different.This is a pretty detailed list of Dysautonomia symptoms that you may or may NOT experience:

 This is a compiled list of symptoms put together by researchers of dysautonomia. You can see why the puzzle is so big and hard to put together and why most days life is a struggle for us. At.any time we can experience any combination of these things not just from day to day, but from hour to hour.


Fainting or near fainting

Generalized weakness

(irregular heart beat that causes conscious awareness of it's beating)
Tremulousness (uncontrolled shaking of body parts)

Seizure like activity

Shortness of breath (air hunger)

Chest discomfort and/or pain

Loss of sweating

Excessive sweating

Loss of sweating and excessive sweating

Delayed gastric emptying

Bloating after meals



Abdominal pain



Bladder dysfunction

Polyuria ( excessive urination)

Pupillary dysfunction
Blurred vision
Tunnel vision

Fatigue (which can be disabling)

Sleep disorders (can cause unrefreshing sleep and an increased need for sleep)Headache/migraine

Myofascial pain (the connective tissue that covers the muscles)
Neuropathic pain (nerve pain)


Tachycardia (rapid heart beat)

Bradycardia (slow heart rate)

Exercise intolerance




Postprandial hypotension (low blood pressure after meals)

Blood pooling in limbs (can make legs feel heavy and appear mottled and purple in color or swell to sometimes twice it’s normal size)

Intolerance to heat

Feeling cold all over

Low blood pressure upon standing

Cognitive impairment(may include difficulties with concentration, brain fog, memory and/or word recall)

Narrowing of upright pulse pressure
Cold hands (and often feet & nose)
Hypovolemia (low blood volume)

High blood pressure


Numbness or tingling sensations

Reduced pulse pressure upon standing

Low back pain

Aching neck and shoulders

Noise sensitivity

Light Sensitivity


Arrhythmias (irregular heart beats)

Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses)

Easily over-stimulated

Feeling full quickly
Feeling "wired"

Food allergies/sensitivities (some foods seem to make symptoms worse) Hyperreflexia
(overreactive reflexes)
Irregular menstrual cycles

Loss of appetite

Loss of sex drive

Muscle aches and/or joint pains

Swollen nodules/lymph nodes

Polydipsia (excessive thirst)

Weight loss or gain

Feeling detached from surroundings

Restless leg syndrome

Thanks again for taking the time to read.

"But you don't look sick!"

How many times have I heard that?I have surely lost count by now.As we all get ready for whatever we are doing this weekend,and we leave the house with a smile on our face,at some point someone will have these words uttered to them.You know,we are sort of like the turtle with it's protective shell.Most people only see the tiny claws and head poking out,but what is under the shell is a mystery.So it's the same for us POTSy or Dysautonomia sufferers.People see whats outside,but not whats under the shell.I just want to give you a word of support this morning,to let you know there is a vast group of us who suffer together,mostly via the Internet.I knew nothing about Dysautonomia after being diagnosed until I found You Tube.It saved me.That lead me to face book,and my wonderful support system.We laugh together,cry together,gripe together,we "get it" when someone says they are having a POTSy day.We know what that's like.There are so many resources available on the Internet,I am in the process of trying to link some of those to my blog,but WE GET IT!This weekend,just remember ,when you are told that you look perfectly healthy,remember that turtle and its shell,and what cant be seen by the eye.


How familiar are those of us with a chronic illness with the spoon theory?You start out with,say,5 spoons for the day.You use one spoon to take a shower,a second spoon to blow dry your hair.A third spoon to out on your make-up.....that only leaves you with 2 spoons left for the whole day ,and its 8 am!I try so hard to stretch my spoons out and make them last as long as I can into the day,I try to nap,which helps me save a spoon,and use it later.I try to have at least one spoon left when the kids come home from school because they deserve my time and attention as much as anyone else does.Housework gets spread"lightly" through the week.and these are only the things I can do.I can sit on the floor and fold laundry,I can dust if its nothing high where I need to reach up.I can clean the windows,they  tilt in.Things I cant do:run the vacuum,it will drain me in under a minute,same goes for vacuuming the stairs.I cant dust high locations where I have to reach,or I will get dizzy and heart palpitations.I cant scrub the shower,I get very sick from the heat and steam.I cant drive right now...I would give all my spoons to be able to do this.I miss my independence more than anything else and its tough to always have to rely on others to get you where you want to be.that one is the hardest to swallow.Not being able to hop in the car with the kids to go to Wal Mart or McDonalds.So,for now,I ration my spoons so carefully.We are having a b.b.q. this afternoon,which means to save a spoon to use then,I will need a morning nap to conserve spoon usage.Funny the things we take for granted isn't it?

Thursday, September 16, 2010

Day to Day Challenges.

I think unless you are a person who suffers from a disability,or a long term illness,it's hard to appreciate the ease in which everyday things are done.For example,making my bed in the morning actually drains the strength out of my arms,and requires me to take a rest after.Unloading the dishwasher,or running the vaccum all require a great amount of energy,and to someone who is short on energy anyway,it can be very tiresome,and very frustrating.The worst part of my day is taking a shower.I know that may be hard to believe,but the heat and steam actually cause my heart to race faster and the feelings of dizziness to be much worse.I usually have to do this while sitting down in the shower on the bench .This used to be a relaxing time for me,now its get-in-and-get-out -as- quick-as you-can.All of this being said,I can say on a up note that the propranolol the Dr's have put me on is working well.The worst side effect is nausea,and its usually in the evenings,and it does get pretty bad.But during the day,thankfully,I am for the most part nausea free.I am so glad to finally be on some form of medicine and that it's working for me.All my symptoms are not gone.The overwhelming fatigue is still there,the joint pain,the brain fog,(and more that I know I am forgetting...)are still there,but I can live with those.The relief I feel being able to breathe and NOT have a pounding heart makes those other symptoms easier to live with.Some things I cant cook,anything that involves boiling steamy water,like spaghetti.I can start it,but my husband or son will have to finish cooking it and drain it,because if I do,I may be passed out on the floor as a result of the heat and steam making my heart rate rise and my blood pressure drop. I miss my old life a lot ,and sometimes feel a little bitter about it.But then,I look at the other side of the coin and know how lucky I am just to be alive,and the bitterness goes away.Yeah,this life of mine isn't perfect,BUT it is MY life,and I am grateful for it.


Tuesday, September 14, 2010

1. The illness I live with is: POTS (Postural Orthostatic Tachycardia Syndrome)a form of Dysautonomia

2. I was diagnosed with it in the year: After 2  years and numerous doctors I just began to be diagnosed in September 2010.although we knew this was the diagnosis I was headed towards!

3. But I had symptoms since: I have had symptoms since the age 12!

4. The biggest adjustment I’ve had to make is: Giving up quality time with my kids and friends,the ability to "go" whenever I feel like it.Not driving a car.
, 5. Most people assume: I want attention, I'm exaggerating and am too negative or that I am not as sick as I am because I am usually pretty happy and try to stay active as I can as I have learned that it minimizes my symptoms.

6. The hardest part about mornings are: Starting the day off with a shower.It absolutely drains me.

7. My favorite medical TV show is:House

8. A gadget I couldn’t live without is: My compression stockings!

9. The hardest part about nights are: When I cannot sleep or just no energy or I have to cancel plans with a friend becasue I am sick.

10. Each day I take _8_ pills & vitamins.

11. Regarding alternative treatments :Therapeutic massage......wonderful!~

12. If I had to choose between an invisible illness or visible I would choose: VISIBLE hands down. If only to shut people up because they could SEE that I was really sick!

13. Regarding working and career:Unable to work anymore.Was fired from my last job due to my FMLA running out and no more vacation or sick time to cover me being ill.
14.Favorite quote or scripture that helps get you through tough times:Those who hope in the Lord will renew their strength. They will soar on wings like eagles." Isaiah 40:31

Kids and Chronic Illness

This is a tough post to write.I worked for almost a year after I got sick from mono and POTS,and would drag myself home every night.I remember pulling the car into the garage,and plastering on a smile for my two children...until the day came that I couldn't keep plastering on a smile and hide my illness from them.He is 13 ,she is 6(and 1/2!!) and they are precious to me.The funniest thing about all the smile plastering I was doing,is that they both saw right though it to what lay beneath...Mom is really sick.
The hardest thing to do ,is to have to tell them "no" when they want to do something fun because I don't feel well. Also tough is the amount of napping I require just to be able to function.My 13 year old has been wonderful in helping out in this area,he will play a video game with his little sister,or turn a movie on for her,something to occupy her time until I wake up.Its hard not having that"Go Go Go!!!"lifestyle that I had before,I miss it a lot.It's tough not being able to drive and depend on other people to get me places I used to be able to just hop in my car and go to by myself.But the hardest thing of all is learning to accept the mother that I have become to my sweet kids,and knowing that super mom will probably not be returning to my life.The kids understand this and want me to do whatever I can to feel better.If that is a nap,they want me to take one,then I can wake up,and make cookies for them,or watch a movie.Chronic Illness sucks,not just for you,who physically deal with it,but for your family and friends,who deal with it on a emotional basis.

POTS Awareness

Monday, September 13, 2010


Yesterday's Neurasthenia, Today's Dysautonomia

People who a century ago would have been called neurasthenics today are given a host of diagnoses. These include chronic fatigue syndrome (CFS), vasovagal or neurocardiogenic syncope, panic attacks, anxiety, inappropriate sinus tachycardia (IST), irritable bowel syndrome (IBS), postural orthostatic tachycardia syndrome (POTS), or fibromyalgia. Sufferers of all these conditions tend to experience an imbalance, and most often a peculiar volatility, in the autonomic nervous system. We now call this dysautonomia.

The Autonomic Nervous System And Dysautonomia

The autonomic nervous system controls the “unconscious” bodily functions, such as heart rate, digestion, and breathing patterns. It consists of two parts: the sympathetic system and the parasympathetic system. The sympathetic system can best be thought of as controlling the “fight or flight” reactions of the body, producing the rapid heart rates, increased breathing, and increased blood flow to the muscles that are to escape danger or cope with stress. The parasympathetic system controls the “quiet” body functions, such as the digestive system. So: the sympathetic system gets us ready for action, while the parasympathetic system gets us ready for rest. Normally, the parasympathetic and sympathetic components of the autonomic nervous systems are in perfect balance, from moment to moment, depending on the body’s instantaneous needs. In people suffering from dysautonomia, the autonomic nervous system loses that balance, and at various times the parasympathetic or sympathetic systems inappropriately predominate. Symptoms can include frequent vague but disturbing aches and pains, faintness (or even actual fainting spells), fatigue and inertia, severe anxiety attacks, tachycardia, hypotension, poor exercise tolerance, gastrointestinal symptoms such as irritable bowel syndrome, sweating, dizziness, blurred vision, numbness and tingling, and -- quite understandably -- anxiety and depression.
Sufferers of dysautonomia can experience all these symptoms or just a few of them. They can experience one cluster of symptoms at one time, and another set of symptoms at other times. The symptoms are often fleeting and unpredictable, but on the other hand they can be triggered by specific situations or actions. (Some people have symptoms with exertion, for instance, or when standing up, or after ingesting certain foods.) And since people with dysautonomia are usually normal in every other way, when the doctor does a physical exam he or she often finds no abnormalities.

What Causes Dysautonomia?

Dysautonomia can be caused by many different things; there is not one single, universal cause. It seems clear that some patients inherit the propensity to develop the dysautonomia syndromes, since variations of dysautonomia often run in families. Viral illnesses can trigger a dysautonomia syndrome. So can exposure to chemicals. (Gulf War Syndrome is, in effect, dysautonomia: low blood pressure, tachycardia, fatigue and other symptoms that, government denials aside, appear to have been triggered by exposure to toxins.) Dysautonomia can result from various types of trauma, especially trauma to the head and chest. (It has been reported to occur after breast implant surgery.) Dysautonomias caused by viral infections, toxic exposures, or trauma often have a rather sudden onset. Chronic fatigue syndrome, for instance, most classically begins following a typical viral-like illness (sore throat, fever, muscle aches, etc.) but any of the dysautonomia syndromes can have a similar onset.

What Becomes Of People With Dysautonomia?

Fortunately, the prognosis appears far better than it was in the days when the disorder was called neurasthenia. This is likely because bed rest is no longer considered the treatment of choice. Most victims of dysautonomia eventually find that their symptoms either go away or abate to the point that they are able to lead nearly normal lives. Sometimes, in fact, the probability that things will ultimately improve on their own may be the only thing that keeps some of these individuals going. But even though the symptoms eventually improve in most cases, many people with dysautonomia experience symptoms that completely disrupt their lives, and the search for competent medical assistance in rendering their symptoms tolerable is too often a difficult one. So if you think you may have dysautonomia, you should learn as much as you can about the various forms of this condition, especially how the dysautonomias are evaluated and treated.

How I came to be a POTSy head.;o)

Well,on this subject,there is not a lot I know.I have always been sick.My mom remembers me getting ready for school,laying on the bed telling her my heart was pounding and I felt like I was going to faint(classic POTS symptoms).Back then they attributed it to plain "tachycardia" and told me whenever I felt like that to bare down like I was trying to have a bowel movement!It worked for awhile.Fast forward to adult hood.My husband and I began a family.My blood pressure soared out of control and I was placed on bed rest.The baby,Caitlin,survived until one day before my due date,and due to multiple issued pertaining to the high b.p.she died still born. Hard times for Kev and I.We clung to each other and shunned the world,and 10 months later,I was pregnant again,and with a wonderful new Dr who checked me 2 times a week.This little baby was healthy,and I was doing well too.Kevin Jr was delivered by unplanned C section due to his arm compressing the cord. I remember how hard he cried when he was born,and Kevin brought him to me,and as soon as this little guy heard my voice,he opened his eyes and looked at me and stopped crying.Instant bonding and a moment that my hearts scrapbook will always cherish.three months later pregnant again,happy,sad and little k.j. was just a baby!The same wonderful Dr cared for me again,it was a girl this time,so we opted for a repeat c-section and tubes tied,this was the dream family so many wanted.She was born blue.Problems,rushed away from me as I lay there tubes being tied,cut,and burned.Turns out a undiagnosed heart condition that couldn't be picked up on a routine ultrasound,only on a in depth ultrasound they use for families with a history of heart problems.Emily Anne lived for 4 months and had 3 heart surgeries.We mortgaged our home to pay the half million in uncovered expenses.She has her 3rd and final operation at Mayo Clinic.I remember a cold chill going through my body and I looked at Kevin and said "somethings wrong with Emily"right then the Dr's came around the corner.She had made it through the surgery but her little body couldn't come back off the heart lung by-pass machine.How many times can a heart break and mend again,for mine crumbled that day.We returned home to our bouncy 18 month old son who wanted his "baby"oh how my heart ached.Then my health spiraled down down down.First anemia,second a pre- cancerous condition found in my uterus,a hysterectomy,a vein stripping for varicose veins that were pooling blood in my legs.Thyroid condition.I.B.S.Hernia,migrane's,lupus.Then my son got mono.Pretty routine.Took him a month to recover.Then I woke up one morning,and discovered I was sick,very very sick,so sick I couldn't move my arms or legs without pain.Saw my family Dr.I too contracted mono.It took me 3 months to recover from this illness.....but what it left behind,I am still fighting...P.O.T.S. or "Postural Orthostatic Tachycardia Syndrome",a rare heart condition that Dr's do not know much about.

Nausea is NOT a girls best friend!

Well,to cut to the chase in the article today,Nausea is BAD.You know in my first article I was explaining how my family Dr sent me to a Neurologist.He was a great guy,I would have loved to have shared a bottle of wine with him discussing POTS,and everything he knew about it.He trained at Harvard,studied in POTS,when I first saw him he told me I was a text book case of POTS,and there was a clinical study going on in Boston that I would probably get in to.Angels singing and bells chiming in my head!This was it!I would get help!Nope,it didnt happen.I didn't "qualify" for the case study in Boston.The air was slowly let out of my balloon of happiness as one thing or another dragged this illness forward with no diagnosis by him,and no treatment for me other than salt tablets!Salt Tablets helped a little,they raise blood pressure by raising blood volume,and then heart rate drops.It worked....and I gained about 35 pounds!So Finally I layed it on the line with him because I was determined to get some medicine.I waited 6 months to get into a Neurologist at Barnes/Washington University In St Louis Missouri.13 tubes of blood,a EMG,And nerve conduction study later(I will discuss this further later)and 2 weeks later,I an on a wonder drug called"propranolol"My heart is breezing along at a pleasant 72 b.p.m. as opposed to 155.I can breathe with no shortness of breathe.I can do more...BUT the Nausea is now this girls new best friend.Seems to be much worse in the afternoon when all I can do is lay on the bed with a heating pad clutched to my stomach,like a life preserver clutched to someone flailing in the water.I called my wonderful family Dr,Who has been fantastic through all of this to ask if I could get some medicine for the nausea.He said to contact the Neurologist,who then told me I must wait for my appt with the Cardiologist who will be monitoring my heart and blood pressure,before any further medicine will be given.I have to wait??I am crying on the floor in my mind like a 4 year old who can't get the toy they so desperately want.Nausea.....until I see my New Dr,is a girls best friend.:o(

Saturday, September 11, 2010


The title reveals it all right?I have been tossing and turning in bed for 4 hours now and I probably acquired one hours worth of sleep.Quite upsetting to someone who used to sleep like a baby.Big sigh.Well,since I can't sleep,I thought I'd take advatage of this quiet house to write.

POTS is really a mystery illness.In the United States there are very very few Dr's who a) are familiar with the term ,and b)know how to treat it.I got mono almost two years ago from my son,not sure how,I could have drank out of his cup,anyway, I GOT SICK.So sick I was dragging my legs to walk,so weak that pulling the covers up over my body in bed wore me out.My wonderful Family Doctor Diagnosed me,and the road through hell began.I couldn't work,I couldn't do anything I was so ill.I applied for FMLA at work,which bought me a little time as a safety net,but not long.I also noticed new symptoms starting that I had never had before.Electrical jolts in my arms and legs,and even my butt!lol.Numbness in my hands and feet.I told all this to my family Dr,so he referred me to a Neurologist.Next time,I will pick up where I leave this story off.
Well,today is certainly better than last night.I went to bed at 5:30,put my eye mask on,pulled the covers over my head and prayed for the waves of nausea to pass me by.As a sufferer of POTS(Postural Orthostatic Tachycardia Syndrome) there are multiple daily maladies that come into play.The biggest for me is getting up from a sitting or a laying position.I sort of feel like Alice must have when she went down the rabbit hole!The room swims and my heart does double time.I got really sick about 2 years ago when I got mono,since then my life has sort of spiraled out of control.Enough for today's posting.Tomorrow I will tell you more on how I came to be(hehe) a POT head.