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.

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 good.my 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.

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.

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)

Priorities!

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)