Monitoring Mary

optimistically and hopefully following the progression of Mary's pulmonary hypertension...

Mary thanks all of you for your encouragement and prayers. Mary would love to hear from you! Her address and phone number are: 885 1650 Rd, Delta, CO 81416 970-275-3226.

Dr. Mary’s heart-health and happiness at Mayo Clinic in Arizona

Hello and thank you for reading, again.  Sorry I haven’t kept you informed.  It’s just been a rough time to wrap my feelings around and express myself…I know, that sounds crazy coming from ME!  Laughing, here!  But, YES, there ARE times when even I am speechless.  I’ve struggled for God’s guidance and for my own positive sanity more than other times in my life.  Mostly, I write my blog to some benefit.  If I’m not strong enough to be an inspiration, I don’t see a purpose for sharing with you, I guess.  I want to be encouraging and to lift you up when I write.  It actually ends up lifting ME up and inspiring to ME when I write with you in mind.

Scottsdale, Arizona, 3 AM, unable to sleep because my heart is doing flips in my chest and my mind won’t take a break.  If you haven’t been kept up with my little health saga, you can find a link to the health blog on the right side of the main blog page where you can read specifics about the past few months.  The Mayo Clinic is touted as one of the best in the country. I’m here for answers.  The ablation surgery was 6 weeks ago and I’m not feeling as much better as I was told I would by now.  The surgery was rough, painful and long.  The final spot, after burning 5 other spots in my heart, was found to be in the left atrium.  Still short of breath.  Still light-headed.  Still VERY tired.  My heart seems to be doing cart wheels at the most inopportune times, leaving my hands shaking and me gulping for air.  The best news is that during the ablation they did a gauge reading in the pulmonary artery and it read normal.  So, either the pulmonary hypertension is no longer a diagnosis or it comes and goes.  Maybe Mayo will clarify that for me.

I won’t go on now and I probably won’t put the next health blog on the music time line.  So, look for the pulmonary hypertension portion of the blog if you want to read about this issue in my life.  Thank you so much for caring.

Dear God, Please lay your healing hand upon me and show me clearly what you want from me in this life.  You have good plans for me, plans to make a difference in this world.  I have spent too many days focused on this search for answers.  Please help me to live a full life while continuing to care for myself.  Help me teach my daughters and those around me that it is right to take care of yourself and that only by doing this can you turn around and care for others.  Help me to laugh joyfully and think positively.  Help me to see the gift in each moment.  Please watch over the doctors at Mayo Clinic that I’ll see over the next few days.  Open their hearts to sincere care and lead them to the answers that are needed to heal me completely and help my family during this difficult time, as well.  YOU are my reason, Lord.  I love you and offer my life to glorify you.  Amen

Ablation for the tachycardia…a little emotional tantrum moment

I’m not shy to say that I’m scared.  They can talk about how easy an ablation is and how high the success rate is and how rare the complications come up.  But, the fact is, they are going to be messing around inside of my heart and it’s only easy for the doctors, NOT the people who have to go through it….at least not emotionally.  I wish I had complete confidence in the doctors who have been sent to take care of me.   In the headache and fog that I’m living with which is the after thought of each tachycardia episode, I’m not being my most strong and positive self and wish I had opted to have it done today instead of waiting until next week.  *sigh*  I’m sure after a few days of resigning myself to the reality of ablation and I’ll be back to seeing things clearly and in a positive light.  But, at THIS moment, I’m just feeling alone and scared, I guess.

Craig and Stefi will be coming back from Iowa for the procedure, but barely.  The train will arrive Monday evening and I’ll have to leave for the hospital at 6:00 Tuesday morning.  I’ll be seeing patients Monday most probably to take care of those who can’t be seen later in the week.  I’ll be totally exhausted, the way that it’s been effecting me.   I so wanted some time to snuggle with my Stefi before Tuesday.  I feel so foolish, having thoughts that aren’t completely positive…like the fact that I came into this world with no one but my mother really paying attention because it was during wheat harvest and I may go out during corn and bean harvest.   I know I’m not going to die….or maybe I DON’T know that completely.  You know the drill, all of those complications that the doctor has to cover with you so you know that if it DOESN’T work out, they may have to call another surgeon in and you could have a pace maker, or bleeding around your heart, or damage to your heart if they puncture it, or….geesch!  I just have to hold onto the faith that these things won’t happen to me!  I have so much to do, yet!

Boy, you are getting to know me at such an unusual time in my life.  NO one would expect me to express and let negativity creep into my healthy thoughts like this.  I’m sure it’s partially because I just don’t feel well and it’s scary facing something like this when your mind is strong and well oxygenated, much less when you’re dizzy-headed and tired all of the time.  I’d love to be held all night while being told that everything will be fine, just like a little child clinging to someone they believe in.
And then there’s that little voice in the back of my mind that’s fearful of the pulmonary hypertension diagnosis and praying that IT’s not causing the dizziness and exhaustion and shortness of breath.  The cardiologist, yesterday, didn’t think the Tachycardia could be causing all of the shortness of breath I’m experiencing.  That wasn’t what I wanted to hear.  I want to hear that the tachycardia is responsible for all the symptoms and I want to hear that all I have to do is stop taking some supplement that I’m taking and it will all go away!   I finally got my lab results back today and there were levels TEN TIMES normal for testosterone and a little high for DHEA.  I had hoped that this was ENOUGH high to account for the 70 pages of monitor readings over the past 25 days that each showed my heart rate over 160 beats per minute.  There were even some readings as high as 220!  But, neither the hormone doctor nor the cardiologist think that it would account for all of this.  *sigh*  Just in case, though, I’ve stopped taking the bio-identical hormones in hopes that it will prove to me that, in fact, this ablation is necessary.   I should be convinced in a couple of days.  Because in the meantime, my heart is still leaping out of my chest on a regular basis and I find myself planning my day around naps.
Thank you for being a sounding board.  Once I woke up this morning, I couldn’t go back to sleep and I was just overwhelmed with dread and emotion.  I’ve got a packed morning of patients and I have to get myself and my attitude in order.  I’ll do fine after I get around.  In the meantime, I’ll be reminded to take time to pray today and to allow myself to cry if I can find the privacy.  Tomorrow will be brighter and I’ll be reminded of all the reasons to thank God that this isn’t any worse and that this is basically a low risk, high success miracle that I’m about to go through.
Thank you for caring, as always.
Mary

Ablation, possibly the next step in my little adventure?

So, I’ve been on the 30 day cardiac monitor, now for nearly a month.  On the way home from my brother-in-law’s funeral service in Oregan last Sunday, they called me a couple of times from the Monitor center in Texas and made me sit down.  So, Monday I decided I should call the doctor’s office who had told me 3 weeks ago that the doctor was going to call and tell me the plan.  They had originally said that I was beating over 160 per minute multiple times a day.  Well, when I called to tell them that once again no one had called after they told me to be expecting a call, they told me he was in MONGOLIA!!!  .**just HAVE to add a chuckle here**…  Anyway, the nurse reviewed my monitor readings and told me that I was topping off between 180 and 200 and it was happening often.  She was worried I might pass out with it and in thinking back, I had had fleeting thoughts of the same on escalators in two different airports where I thought I might take out the people below me. *sigh*

I guess I’m happy to know that there’s a reason for the way I feel and hopefully THIS is the cause of my shortness of breath and all the rest, NOT the original pulmonary hypertension diagnosis.  They referred me to a specialist, Dr. Maria Anderson who does ablation.   I have an appointment with her on Monday and could possibly have the ablation as early as Tuesday.  A quick description of ablation is…they go into your heart with a lead through veins and zap the sinus node that is firing and causing the problem. There CAN be some complications.  But, mostly…at least relative to other heart procedures, it’s pretty safe and effective.

Like a little sheep, I initially just began changing patient appointments in my office and preparing the power of attorney for my husband.  I don’t expect the worst by any means.  But, I plan for it just in case.  But, after a few days of thought, unless Dr. Anderson gives me some good reason to hurry into this, I’ll wait until Craig and Stefi return from Iowa where they are harvesting.  It would be horrible for Niki if something WERE to happen to me and she was here all alone.

I’ve been frantically trying to find ANY good reason, thyroid–testosterone–DHEA–ANYTHING that I could be doing that could cause this, so I could simply STOP those things and continue on without having to have this procedure done.  So far, the newest blood results show my thyroid to be OK.  The DHEA and testosterone ARE high….I just don’t know if they are high enough to cause a problem like this and hopefully, Dr. Anderson will be of a similar mind and able to confirm this for me.

I’m so much healthier than I was two months ago.  I’m accepting some limitations and trying to gain strength as I go, exercising longer periods of time and eating much more healthy.  I’ve even unexpectedly lost about 5 pounds.  Unfortunately, I think the exercise and weight loss has set me up for a little instability in my back and so I’ve had to deal with some rude reminders of how my patients feel.  :o)  I keep saying that I can have empathy without having to actually EXPERIENCE everyones pain, though!!  It will just make me a better doctor, I’m sure.  *chuckle*

I absolutely believe that I’m headed down a positive path and that your prayers have helped me at every step.  Thank you so much for caring and for sharing.  I’ll let you know how the visit on Monday goes.  Remember to love every step of every day.

Hugs from Me…

Turn it over to God, but be pro-active in finding your own answers where you health is concerned. Pulmonary Hypertension and Tachycardia

Remember that no one cares about the outcome of this thing with your health like YOU do or someone who loves you does.  Doctors seem to have gotten into this numbers game where they don’t have or take the time to really put everything together.  So, it’s very important that you understand all you can about your condition, partially to help find the answers but also so you’ll be able to see if the doctor standing before you is actually going to have the answers you need to get better.  Call you pharmacist.  Call friends you have that are doctors or have something similar to what you’re experiencing.  Keep lists of ideas that you come across while studying your problem and then be sure you get the answers.  But, also remember that there is some information that isn’t correct out there.  Be leery of websites that have something to sell you.  Be more trusting of sites like Mayo and Cleveland Clinics.  But, be sure they are ACTUALLY Mayo and Cleveland.  If you read multiple accountings of what you’re studying that are the same, THEN you know that these are the articles you can trust.

I haven’t written in a while though it seems a lot is happening.  I’m still not convinced that the diagnosis of Pulmonary Hypertension is mine to own.  In about a month another echocardiogram will be performed to confirm this or not.  Thank you for your prayers about this.  I do hope that the symptoms I’m experiencing, now, are more connected to the tachycardia.  In the meantime, I’m still wearing this 30 day cardio monitor that they told me over a week ago I may not have to wear much longer.  I’ve been in touch with the cardiologist’s office, them calling me, three times in the past 10 days where they have said that Dr. Howell wants to speak with me directly and either they or he would call back with some discussion.  Well, I’m still waiting.  Either they are all irresponsible idiots or whatever they are picking up(they’ve said my heart races to over 160, multiple times a day) isn’t something dangerous for the time being.  It WOULD be considerate of them to let me know for sure though.  And they should stop telling me that someone will call, if they can’t be sure that will happen.  The people on the end of the phone sitting in Texas, who call after they record an event on the monitor say that they can’t discuss what they’re picking up.  “That’s a privacy issue between you and your doctor.”  That frankly, sounds like a bunch of *****.  If it was a privacy issue, why is it that I am telling THEM how I’m feeling and they are correlating it with MY information on the screen.  I can understand them not wanting the liability of actually sharing information with me.  But, the doctor’s office should be following up, especially once they let you know that they are picking things up and little alarms are going off, sometimes when I’m singing or taking care of patients.  It can be quite unsettling.  If they want my stress level to go down, they are certainly not facilitating.  *sigh*  So, in the meantime, I’ve turned it over to God.  I don’t know how people deal with these kinds of things without some sort of faith to lean on.  But, I’m also trying my best to figure this thing out on my own.

The monitor is picking up tachycardia.  I’m sure it’s the SVT that was picked up after the stress test.  So, I’ve done as much reading as I can about it and am doing the most logical things possible to take care of myself.  None of this has been really stated by any of the doctor’s I’ve seen, other than the pulmonologist that though possible I was being short of breath from heartburn so suggested I cut out spicy foods and caffeine and eat earlier in the evening.  Heartburn is NOT the problem.   I’ve cut out all caffeine and alcohol and any of the herbal extracts that I occasionally take that have even the slightest chance of causing a rapid heart beat.  I’ve also been keeping up with the gentle exercise routine that I began when first having the diagnosis of Pulmonary Hypertension.  When I started just simply to stay in constant motion under the water in the endless pool, I could barely go 5-10 minutes without having to stop and work for many breaths to catch my breath.  NOW, I can go a good 30-40 minutes, stopping for an occasional deep breath that allows me to start, again.  I’m still not exercising full on or trying to keep my heart rate up or anything like that.  In fact, it’s mostly that I want constant movement withOUT having my heart rate raise above 12o beats per minute.  I am stronger and having more energy and needing less sleep.  I did sleep 10 hours thursday night and 9 hours last night.  But, I’m not as exhausted during the day.   It was good for Dr. Howell to be able to tell me that he didn’t think I should worry about hurting myself as long as I didn’t push it too hard.

The most telling thing that I’ve uncovered is that I’ve been on Armour Thyroid for 4 years.  It has a side effect of rapid heart rate and shortness of breath.  I’ve traced my blood tests back to 2007 and see no definitive necessity for me to be taking the Thyroid.  So, I’ve cut it in half and plan to have a blood level taken next week to see what it’s looking like.  If it is high, which I suspect is the case after looking at some past blood test results, it would be a possible answer from God that this is the cause.  Oh My GOODNESS, I can hardly contain myself!!!  I’ve called and faxed the information to Dr. Howell and haven’t gotten an opinion from his office, yet.  But, I made an executive decision to cut back.  I don’t think this is the way this should work, honestly.  You should be able to call your doctor, ask to speak to a nurse about something like this, and THEN have an educated discussion about what you should do.  My monitor is on for another 2 weeks maximum and if there is any possibility that the Thyroid is what’s causing this, possibly that will be enough time to pick it up and confirm it.  Thank you, again, for your prayers and I’ll keep smiling and doing all I can with every moment of my life with the family that I love and appreciate so much.  Love to you all and when counting my blessings, today, YOU will be one of them.  :o)

Keep Living While Waiting for Answers about Pulmonary Hypertension and Tachycardia

Wires attached to my chest lead to a little black monitor worn on by belt.  I woke up short of breath and feeling my heart pounding as if trying to leave my chest at about 1:30 this morning.  I stood up several times trying to catch my breath and walked to the window to see the most beautiful full moon that God placed in the sky to calm my fears.  As I look at the moon, I was able to catch a cleansing breath and I closed my eyes with a smile to thank God.  I’ve been thanking Him a LOT these days, every time a breath is simply satisfying.  I didn’t push the button to let them(the people in Texas that watch their screens) know that I was noticing something.  It seems that I’m pushing that thing every time I turn around and I thought I might be dreaming that it was a problem and it really wasn’t.  I laid my head back down.  Then, the alarm at my waist began screaming.  It woke Stefi who was sleeping on my floor and she was scared.  I told her some wire must have come loose and they were letting me know and she went back to sleep.  Craig didn’t notice.  I stepped into the bathroom and tried to figure this contraption out and noticed that they were recording some sort of event that I must have been having in my sleep.  Without my faith in God, this little journey in my life would be such a frightening one.  But, I know that His hand is on my heart, just like my song says.

When someone tells you that you have something like Pulmonary Hypertension, the first reaction after finding out how serious it can be is to be in kind of a depression laced with shock.  I felt a little like running away at first.  Please let something like this lead you closer to God and to all the things that are most important to you in this life.  The value judgement of “Don’t Live It Until You Have To” has been ingrained in my person philosophy for many years and this experience is no different than any other crisis that I’ve faced.  I DO want to be responsible and follow through on collecting information and self access my lifestyle in an honest way.  But, if pulmonary pressure isn’t considered more than moderate at this point, remember that there may be other reasons for your symptoms.

In searching for a reason for the increased pressure, the dye enhanced CT scan of my lungs was normal for my age.  YAY!!!  The causes of increased pressure that could come from lung involvement are mostly extremely serious with resulting treatment that isn’t something I’d want to undergo without absolutely having to.   My most recent God-Blessed-good-news came from a new cardiologist that I saw this past week.  Dr. Howell’s opinion is that the earlier doctors have possibly put the cart before the horse.  His theory is that the tachycardia that was picked up following the stress echocardiogram may be an indication of arrhythmias that may be causing the exhaustion and shortness of breath and other symptoms and NOT the PH.  After looking at the ECGs and the stress echo, he gave me such good news that really no one had shared with me previously.  He said that my heart is strong with no evidence of blockages or damage, yet at all.  Aside from this flippity thing that it’s doing, which is more commonly a nuisance instead of life threatening, he sees me as very healthy.  I’ve always been proud of living a healthy life, keeping my stresses reasonable, turning them over to God, no smoking, no drugs, no TERRIBLE eating habits(although, I am a rancher’s daughter, however, as you know!:o).

To flush out this arrhythmia, I’ve been wearing a monitor for the past week, 24 hours a day.  The good news is that they keep seeing that my heart rate races to over 160 beats per minute several times a day.   Can’t believe that I’m actually stating this as good news.  But, bad new can be GOOD news if seen relative to even WORSE news!  :o)  I’m tired….beyond tired.  So exhausted I can’t raise my arms off the arm rests, if stated honestly.  But, I’m so praying that this is the problem and NOT the PH.  At least there are options for this diagnosis.

Thank you for your prayers and I’ll keep you posted as this progresses.

In His love……Mary

Pulmonary Hypertension—Take Action, NOW…Live healthy. Smile often. And educate yourself in a practical way.

It’s been less than a couple of months, now, since I learned I have pulmonary hypertension with tachycardia.  I felt so helpless at first.  The stress echocardiogram left me gasping for air for weeks with no real explanation of what was going on or how serious the condition might be.  If you’re suffering with this you know how awful it feels, like someone has a pillow over your face and you can’t get them off of you!  Standing was the only position I could find that allow free breathing.  The shortness of breath is less acute, now, and less frequent.  I still get terribly tired and am sleeping about 9 hours a day, which is so healing.  I thank God every time I find myself taking a deep satisfying breath.  But, I don’t know if that would be true if I weren’t able to research this condition, myself.  I’m the type of person that can easily make lifestyle changes to improve or lengthen my life.  nearly 30 years ago I gave up a promising musical career on stage because of asthma and I’ve never been sorry.  My life is so utterly blessed.  And I truly believe that you have NOTHING to lose and so much to gain by doing making the small changes to give you a better chance with this condition.  It’s really a no-brainer!

I feel that I’ve done more for my improvement by incorporating the guidelines from Cleveland Clinic and Mayo than any doctor has suggested.  Positive changes in your lifestyle and expectations will go a long way in dealing with this disease.  You’ll have good days and bad ones.  But, overall, I’m convinced that there will be more good days if you, YOURSELF, can do all the practical things you can to increase the chances that your quality of time and length of life be the greatest possible.

I have yet to find a doctor who actually visits with me about the actual condition.  I’m not even convinced that an individual doctor who isn’t specializing in this can HAVE a comprehensive conversation about it.  I saw the new pulmonologist yesterday that had ordered the CAT scans, blood tests and pulmonary function tests two weeks ago.  He’s a likable fellow.  But, as most, he’s on auto pilot and didn’t remember to tell me the results of all of my tests.  I’ll have to call back to get those confirmed.  Thankfully, the CT was clear and I do NOT have actual disease in my lungs.  His focus on what’s going on with me was tempered by the fact that others were waiting for him.  I even told him that I had a list of questions.  He answered ONE of them and then stood up and walked to the door with his hand on the doorknob.  I ended up distracted and didn’t insist that he answer the other questions.  I won’t see him again for 4 months after they do another echocardiogram to see if things are progressing.   I don’t know what I was expecting.  But, it was more comprehensive and serious than what I got.  The research shows that the type of exercising that I’m doing every day in the water was as effective as the medication for it over a 6 week period and this doctor didn’t suggest ANY type of self-care other than not eating spicy foods and NOT getting tired.  There are very reasonable recommendations out there that are easy lifestyle changes.   Don’t wait for some doctor to tell you what to do.  Learn how to take care of yourself, NOW.

Thank God for my education and for the Internet.  However, you have to be very cautious when reading words that you don’t understand and take care NOT to over react to what you read.  I think that the statistics that are reflected in the research as stated on the Internet are based on diagnosis of people in very late stages of Pulmonary Hypertension and that most people go years before they find an answer to the subtle changes in their health.  I also think that Pulmonary Hypertension that is passed down in a family is different and not as debilitating and probably doesn’t shorten lives like an acquired PH.  Just because they have told you that you have this condition, does NOT mean that you have no control at all over this illusive condition.  Read the literature, but not if it upsets you too much.  Accept that there will be Educate yourself.  Live healthy.  Smile often.

I was given little as a comprehensive suggestion for living my life.  Chances are, the same is true for you.  Here is a clip from the Mayo Clinic’s suggestions:

  • Get plenty of rest. Resting can reduce the fatigue that may come from having pulmonary hypertension.
  • Stay as active as possible. Even the mildest forms of activity may be too exhausting for some people with pulmonary hypertension. For others, moderate exercise such as walking may be beneficial, and using oxygen during exercise may be especially helpful. But first, talk to your doctor about specific exercise restrictions. In most cases, it’s recommended that you not lift more than 50 pounds (22.7 kilograms). Your doctor can help you plan an appropriate exercise program.
  • Don’t smoke. If you smoke, the most important thing you can do for your heart and lung health is to stop. If you can’t stop smoking by yourself, ask your doctor to prescribe a treatment plan to help you quit. Also, avoid secondhand smoke if possible.
  • Avoid becoming pregnant or using birth control pills. If you’re a woman of childbearing age, avoid becoming pregnant. Pregnancy can be life-threatening for both you and your baby. Also avoid using birth control pills, which can increase your risk of blood clots. Talk to your doctor about alternative forms of birth control.
  • Avoid traveling to or living at high altitudes. High altitudes can worsen the symptoms of pulmonary hypertension. If you live at an altitude of 8,000 feet (2,438 meters) or higher, your doctor may recommend that you move to a lower elevation.
  • Avoid situations that can excessively lower blood pressure.These include sitting in a hot tub or sauna or taking long hot baths or showers. These activities lower your blood pressure and cause fainting or even death. You should also avoid activities that cause prolonged straining, such as lifting heavy objects or weights.
  • Find ways to reduce stress. These can range from yoga, meditation and biofeedback to warm baths, music or a good book. Try to allow at least 30 minutes a day for an activity you find relaxing. Many people with pulmonary hypertension find that simply reducing stress can greatly improve the quality of their lives.
  • Follow a nutritious diet and stay at a healthy weight. It’s likely your doctor will recommend limiting the amount of salt in your diet to minimize swelling of your body’s tissues (edema). Most experts agree that you should eat no more than 1,500 to 2,400 milligrams of salt a day. Keep in mind that processed foods often are high in salt, so it’s important to check labels carefully.

Facing a difficult diagnosis? Journal to manage the sadness of pulmonary hypertension

Something that I learned years ago as a coping skill was to journal in the form of a kind of discussion prayer, where I explain my feelings and then talk back to myself as a true friend. In my head and heart I hear the voice of God in my responsive  part of the writing. It’s amazing  how much better I feel after writing. It’s 2:00am and I can’t sleep for trying to catch a breath. My hesrt is leaping out of my chest.  After two and a half hours of tossing, sitting up to gasp for air, and even listening to a radiolab, I decided to get up and transfer an entry I made in my journal this week trying to work through the sadness I feel about this diagnosis. Maybe it will help you cope as well.

I find myself crying easily these days.   I have a deep aching sadness that’s hard to convey.   I can’t really share that with anyone.  It’s not my normal self at all and it’s not someone I want to become. Yes, I know all the stages you go through when dealing with a loss and this isn’t any different. But, maybe I don’t have to take forever working through the awkward stages. Let’s journal and get rid of it.

Ok, so what about knowing that I have Pulmonary Hypertension makes me so sad?  I guess mostly I’m sad at the thought of missing out, sad to think that my daughters or husband may need me and I won’t be ther…either because I’m actually gone or focused on survival. I may not be there to answer questions, to encourage, to remind them to pray. I have so many more songs to write, to SING, so many more things to teach my children…and yes, even to teach my husband! :0)

In thinking sbout this, I suppose the answer to THIS particular sadness is preparation. I’ll get two journals, one for each daughter and I’ll begin writing in them regularly. If I write my little recipes for life I can make a difference even when I’m not standing there. It may sound silly, but I think it will even make me feel less sad to write down my recipes that they love me to make for them so much and I think they should be in my own handwriting.

I’ve already started playing the game with Stefi about hearing me in her head so that I’m always there with her when she needs me. I’ll do that a little more.  ” What Would Momma Say” is the game. I remind them how well they know me and ask how I would answer the question. If they get good at this, then if for any reason I’m not around they’ll have me in their hearts and heads helping them through, cheering them on, wishing them well and of course always telling them how much I and God love them.

I may be sad for things undone.  But, not sad about thing unsaid.  If i had things that i needed to share I would say them right away.  Having such a hard time breathing tonight I contemplated sending an email to Craig.  But, there really wasn’t anything to say, new.  I’m not one to have left things unsaid, at least positive things.  And negative things don’t need to be said.

But the songs I haven’t written, the people I haven’t touched in a healing way…those are hard to get around grieving for—I’m not gone. **sigh** with a little head shake, here…So, I’ll simply keep writing and seeing patients and singing as long as I possibly can!  I’ll waste as little time as possible. But, I’ll respect how I feel and accept some limitations, which will be hard for me. Limitations aren’t something I’m used to accepting.

No matter whose life you look to, if they lived a purpose-filled lif, they could have done more if they had lived longer. What if Jesus had lived longer? Or Mozart, or Fernando or my dear friend James Smith..or my father?  None of us live forever. Because of my Positive perspective, though, and my silly early fear in life that I would die young, I’ve already lived, loved, and contributed more than many people do in a lifetime. And by the time I’m out of here, I’ll probably pack another lifetime of loving, living and expressing myself!  I will be me for as long as I can!

At least for this moment I’m not so sad anymore.  Thank you, God.  And focusing on this blog has calmed my breathing, too!  I know it will creep back, but I have a weapon to defend myself with.  Through this journal, I can see ways of working through my emotions and coming out on the other side, being able to breathe better with a smile.

Dear God, please give me strength and purity of heart. Let my mind and heart rest peacefully. Calm my weeping soul and keep me positive in my every step forward. Thank you for the blessings in my life and help me to focus on them.  You ARE good and good to ME, Lord.  Amen

It’s a little after 3:00.  I’m going back to bed and I think I’ll be able to sleep, now. Write your own journal and work through YOUR sorrow, if you need to. It really does work!  Good night and God Bless. You are in my prayers…

Diagnosis–Pulmonary Hypertension–don’t live it until you have to, but DO live!

I’ve been getting a grip on this diagnosis.   I understand if you’re out of breath.  It’s such a frightening thing, isn’t it?  The average person won’t understand what you’re going through. You look fine, yet you feel so awful.

There’s so  much information out there?  Even with a doctor’s education it’s hard to wade through it all and make conclusions based on what you read. Try not to over react to the most disturbing things you might read.  Instead inform yourself so you can tell if the doctor you choose knows his stuff.  Then focus on the positive lifestyle changes you can make during this difficult time of discovery. Here are some of the changes I’ve implemented in my life so far.

First I’ve accepted that I am in the fight of my life…FOR my life. No matter the outcome of the testing, if something doesn’t change, my life will surely be shortened. I will not be the reason that I have a shorter life, meaning something I do or fail to do.  I might as well get busy doing all the things that are obvious, the things I’d recommend to any patient facing systemic malfunction.

As I mentioned before, people won’t understand for the most part. Surround yourself with people you can trust and people that will respect this condition without treating you like an invalid. You need to laugh and smile and feel worthwhile. Choose companionship in a healthy way.

Without becoming neurotic, I’ve been keeping a journal of the times I am short of breath, dizzy, or any other  symptom that may lead us to a define cause in the long run.

Write a list of at least 5 blessings each and every day.

Exercise twice a day, 20-30 minutes of gentle constant movement, only stopping to regain breath.  When I first started to exercise I had read not to exercise the arms and legs at the same time. But, I’ve found that as long as I exercise in water, I can gently exercise all motions with both arms and legs. I am doing many of the same exercises that I designed for Mother after her stroke, moving arms and legs in all the positions to remain independent and strong. The water is so helpful and you can do so much more in it. Just be careful not to go too long and exhaust yourself. You’ll feel incredibly heavy when you get out. Start with 10 minutes twice a day and work yourself up to 30-40 minutes twice a day. I feel very blessed that I can handle 20 minutes twice a day at this point.

Journal–My journal is my direct connection to God and to my inner self. At this point, my head is spinning with emotion…sadness, anger, helplessness, fear, along with anxiety and denial and probably some things I haven’t thought of, yet. In my journal I’m working my way through each of these emotions, describing why I feel this way, understanding and accepting the feeling and then writing the obvious responses to those feelings, responses that a best friend would offer…responses that I truly believe are answers from God through my intuitive self.   I’ll give myself at least 30 minutes to write in my journal each day and more if I need it.

The trip I’m on right now I have a lot of alone time, time to research, reflect and to write about it.  Give yourself time to consider this thing and how it will effect your life.   You’ll cry. I sure have. And it will make it harder to breathe, which will make you want to cry more.   Respect your grief. You are grieving a loss. Once you accept where you are, you’ll be able to love where you are. That IS the ultimate goal, to love each moment we’re given, find the purpose in it and cherish it.   It seems unlikely now.  But, if that is a goal you’re committed to, with God’s help, you’ll find the answer.

I either play my music or work on art as a meditation for at least 30 minutes to an hour each day. I personally don’t listen to a lot of music. If listening to music is your special way of meditating, then plan it and do it. Whatever makes you feel closer to God, calms your fears, allows you to breathe more easily, makes you laugh…plan it and do it regularly.

I am consciously making an effort to physically laugh and smile whenever I have even the smallest of urges to do so.  Laughter has been known to be good for the heart and lungs for years.   I may even incorporate some laughter yoga into my daily routine once I get into a groove.

I’ve made some changes to my diet and will talk about those in another blog, since this one is getting so long. One thing I’ve done, though, that has helped with nighttime shortness of breath, is I’m not eating and drinking very little aft 7:00pm.

I figure that these additions to my life will probably take me 2-3 hours each day. That seems like a lot, but it would sound ridiculous to say that it isn’t worth it, wouldn’t it?  It’s funny the things we can find time for at different stages of our lives, isn’t it?

Thank you for reading and I hope this has been helpful. I’ll pray for you if you’ll pray for me.  Kind of a new version of the back-scratching trade off.  :0)  Breathe easy tonight and sweet dreams.

Positively live with Pulmonary Hypertension and Supra Ventricular Tachycardia

I’m trying to make sense of a diagnosis that came up during the Stress Eco test that they did for me nearly two weeks ago.  I experienced tachycardia following the test with a heart rate peaking at 184 before they got it stopped.  Then, the pressure in my pulmonary artery at 51.  The pressure being high in the pulmonary artery is the part that I’m concerned about.  This is called Pulmonary Hypertension and if left unchecked it continues to worsen and eventually cause right-sided heart failure.  The GOOD news is that I have no heart involvement, now.   As a chiropractor, I am wired for prevention.  I am just learning about these two conditions and am motivated to learn how best to live in a positive way with them.  I’m hoping that my blog will help others deal with this, too.

If this is happening to you, you’ll be frustrated like I am that pulmonary hypertension involves both the heart and the lungs, can be caused by many things or caused by nothing they can put their finger on.  Unless inherited, I personally believe that there is always a cause and that  unless that cause is unchangeable, treat the root of the illness to slow or stop the progression.  THAT IS the preventative mind-set and the philosophy chiropractic.  Remove all the reasons to be ill and focus on all the reasons to be well.  In most illnesses, the body will take care of itself.  Living with this philosophy may not keep me from being sick.  It may not keep my illness from progressing.  But, I am truly convinced that I will live longer and happier if I hold onto this value and people around me will be happier and less effected by what is happening to ME if I keep a positive and wellness oriented outlook.

My husband, an MD, is forever griping about the dependence the medical profession has fostered in patients on doctors.  That everyone is geared to run for answers and take no responsibility for themselves and the outcome of their illness.  I completely agree with him.  I am reading everything I can about this problem and using that information to plan for my life.  But, be careful.  Some of what you may read is quite disturbing and could cause a terrible little panic or sadness.  Let this troublesome information punctuate the fact that this IS serious.  You don’t have a choice whether to live differently or not.  You HAVE to accept some limitations and do some special things for yourself, now.  That may go against everything you believe.  Maybe you’re a hard worker and take care of everyone around you.  Maybe you never focus on your health and live like there’s no tomorrow.  The first step to changing anything is accepting the fact that you have to change.  Accept that with a shrug and then say to yourself, “OK, what needs to change?  Let’s get on with it!”.

When reading all that material, don’t focus on the worst.  Focus instead, on the fact that YOU are among the unusual outcomes.  YOU are not average and YOU will survive long past what’s expected and with a smile on your face.   You’ll cry and be angry some days.  But, with God’s help and the understanding of those around you, you will LIVE and live well.

I’m at that stage of reading everything I can find on the Internet and ask of any doctor.  Read it all, ask it all and you’ll recognize when someone has published or says something that isn’t correct.  There is MIS-information out there.  No one monitors the Internet for correctness and not every doctor knows what they’re talking about.  Read the sites that are obviously published by reputable clinics like the Mayo Clinic or the Cleveland Clinic and Wikapedia.  Then branch out and read things like MY posts that will come as I uncover more information and how to positively live my life.

I hope if you follow my blogs, YOU too will live more positively with this disease.  The next blog will tell you the first in my personal plan of attach.  In the meantime, Remember to pray…and stay positive!  You are not defeated!