When It Rains, It Pours

These last four years have been the most trying years of my life. I really don’t know what I would’ve done if it wasn’t for my faith and my Big Handsome. Lately though, it seems as though we are all just falling apart by the seams health wise.

When it rains, it pours.

(Google Images)

When I think of that saying, my mind conjures up images of the air conditioner busting right in the middle of summer, the power going off while I’m on vacation, only to return home to a fridge/freezer full of spoiled food, or even the dryer breaking down and having to hang my skivvies out to dry for all the neighborhood to see. It’s pretty sad when one wishes these types of problems would happen instead of having to deal with physical health issues.

A few weeks ago, Big Handsome and I took our daughter for her regular cardiology checkup. She is now 16 and we’ve been doing these checkups regularly since she was 3. The checkups are usually every other year, but since I’ve been sick, she hasn’t been in a few years. She was born with a heart murmur. They told me it should close up by the time she was three. Well, that didn’t happen, so she still has the VSD and now on top of that, has a PFO that the dr. noticed when she was 5 or so.

During this last visit though (we were at the office 5 hours, didn’t get home until 10:30pm) the dr. noticed something on the sonogram that concerned her. Honestly, after hearing the words “this could be serious” my mind went blank. Having to stand by your daughter as she attempts to hold back tears of fear (with a heart rate of 101 lying down) is absolutely heartbreaking. The dr. did say that in her experience, it’s probably my daughter’s VSD that is causing the problem. The dr. took my daughter’s case to a cardio conference at the Children’s Hospital and they determined that she needs an MRI and another sonogram; I’m guessing it will be more in depth.

My daughter is now on a 30 day heart monitor, thankfully, no events to date. The stupid electrodes are giving her a terrible rash and we’re having a hard time finding a non-irritated patch of skin in which to stick them. Just this morning, we received pediatric electrodes in the hope that they will be less irritating. Good news is, she hasn’t had any events, and has been feeling fairly well. YAY!

Then…this past weekend, Big Handsome told me he wasn’t feeling well. Couldn’t really describe it (boy, don’t I know how that feels) just said that he felt funky. It took him a good long while before he got up the energy to workout. Big Handsome works out regularly, although that doesn’t mean that he is in tip-top shape health wise. He drinks, he smokes, he has a stressful job, and he has to deal with me (quite possibly the most stressful) and now is dealing with worrying about our dear daughter’s health as well as worrying about one of his best friends/coworker having cancer again and having to go through chemo, among many other things, I’m sure, that he doesn’t even tell me about. How much can one person take?? He ended up taking his blood pressure and it was in the high140’s/high 80’s-90’s. His bp usually runs lower than the normal 120/80 and his hr is always rather low. We were just at our GP recently for a physical and his bp was a bit elevated at 138/high 80’s. He found that odd, but nothing was mentioned during the exam. So now, we are left wondering. He is generally of the mindset, “if you ignore it long enough, it will go away”; I advised him to please not wait on this. We had blood work done just a few days ago and are waiting on the results. Hopefully, he just has some sort of benign virus or infection or something. This has us both worried though. I spoke with him this morning and he says he’s still feeling funky. He still can’t really put his finger on it; he just says that he doesn’t feel right. He might end up going to Urgent Care or something as attempting to make an appointment with the GP quickly is rather pointless.

I really just want to get off this ride. I would gladly take a broken appliance, a flat tire, even my skivvies dangling in the wind for all to see (all occurring on the same day even), but I just don’t think I can handle any more health issues.

I will keep on keeping on, and even though I may feel helpless at times, I am never hopeless.

“Hope is the power of being cheerful in circumstances we know to be desperate.” ~G.K. Chesterton

Hasta La Vista!

I’ll be off the grid for about a week or so. Big Handsome is taking us for a much needed beach week vacation. Saying “We can’t wait!” is quite the understatement.

Have to share a funny with you all (well funny to me anyway).

I am an admitted germaphobe; admitting it is the first step to recovery, right? My kids know I’m a germaphobe and love to push my buttons. Like the time my daughter was in a McDonald’s with a friend and sent me a picture of herself standing in line barefoot!!! In McDonald's! At least she wasn’t in the bathroom of said McDonald's! They do this kind of stuff to me regularly. Yes, I buy gallons of hand sanitizer, always have it in the kitchen and bathrooms as well as keeping a mini bottle in my purse at all times.

We had to take our daughter for her regular cardio visit the other day (story behind that will have to be saved for another post when we have more information). We are sitting in the exam room waiting for her to go in for her sonogram and I look up to see her holding a strand of hair in her fingers,  stretched out between her two hands, the piece of hair was over a foot long. She looks at me and says nonchalantly, “Gee, I had no idea I had black hair.” My head shoots up to look at her, my eyes must’ve been as big as sauces as I half screamed at her, “AND YOUR STILL HOLDING IT!” I must’ve looked like I was going to hurl. She was laughing so hard, she was crying and almost fell off the exam table. Of course the hair was her own. She just loves getting a rise out of me. Geez, kids these days! Meanwhile, Big Handsome is in the corner snickering away. UGH! Good thing I doubled up on my meds that afternoon.

What do we have though, if we don’t have kids that keep us on our toes at all times?

I am choosing to begin my vacation today, even though we still don’t leave for a few days. I’m so looking forward to sunsets on the beach with Big Handsome, and paddle boarding with the kids. I can’t wait to leave behind this sickness and stress. I’m not taking any medical journal articles, no papers to grade, no transcripts to fill in, no Art Appreciation lesson plans…no work whatsoever. I’m going to relax and enjoy my family. After all, the problems I leave behind will be waiting for me when I get back.

Hasta la vista baby!!

Shout Out to My Big Handsome

I wanted to give a ginormous shout out to my Big Handsome. Let me just tell you that my Big Handsome has been my lifesaver.
 

A bit of our background: I was just out of high school when I met Big Handsome through one of my older brothers at a Youth for Christ youth group. I had been going to the group most of my high school years. Big Handsome was a few years older than me and in college locally.

I’ll never forget the day I laid eyes on him. I was in my girlfriend’s car getting ready to leave and in the rearview mirror I saw a little red truck pull into the parking lot. I had never seen the truck before and was intrigued as to who this new-comer was. Then I saw the most beautiful male specimen (in my opinion) climb out and walk toward my brother. He was wearing a tight blue and white pullover and a pair of stone washed Edwin® jeans (it was the 80’s after all). I told my friend, “Pull back in, and let’s see who he is!” I jumped out of the car and did my best impression of a nonchalant run/walk over to my brother. My brother introduced us and immediately, the cat got my tongue! I muttered a shy, quick hello as I stood there mesmerized by the most incredible smile complete with a perfect set of pearly white teeth. I was lost in his smoldering, bedroom sea-green eyes. His set of pecs weren’t so bad either (I’m just now realizing that I’m not writing a romance novel J ). From then on my friend and I nicknamed him The Model. Let me tell you, I wasn’t the only female that night drawn to him either. He was the proverbial “chick-magnet”. I thought to myself, I’ll never have a chance with him as I stood there watching all the other girls swoon over him. But, the Lord had something else in mind.

I also had something the other girls didn’t have, a brother with whom The Model was friends. Over the next several months we became fast friends. We would talk for long periods of time and he was at our house a lot, first to see my brother, then slowly to see me (that was my hope anyway). That was 25 years ago…

Fast forward to present: As most of you know by now he is tall, dark and oh, so handsome, so much so that every time I see him I still get butterflies. He is also my best friend, lover, soul mate and someone I would lay my life down for. We have been married 21 glorious years (ok, maybe some not so glorious, but who doesn’t experience that at some point?), and have been together 25+. He has taught me the true meaning of loving someone “in sickness and in health”. Over the years, he has taught me that love is not a feeling; it’s an act of your will. He has chosen to love me, all of me (illness included), and tells me often that he wouldn’t want it (our lives) any other way. It is so wonderful to love, be loved, but is such a blessing to also be “in love”.

He has been with me through it all: the doctor’s appointments (and there have been many), the turmoil, the depression, the life altering anxiety, the victories, the “I’m done” phase, the crying, kicking, screaming, throwing myself on the bed, the “why me” phase…like I said, through it all. He has taken over the grocery shopping, meal planning, cooking, taking/picking up kids from various functions, running bunches of errands, putting up with me (which in and of itself is quite the job, see above) and all of this on top of having his own health issues as well as a very demanding, stressful job that keeps him on call for what seems like, 24/7/365. He is, for all intents and purposes, my Superman.

We were watching the movie “Touchback” the other night. If you haven’t had the chance to watch it, try to watch it. It is one of those tear jerker, emotional, inspirational type movies. There is a song at the end called “Nothing Without You” by Phil Vassar. This has now become our new song. Big Handsome plays it every chance he gets and even sent me some of the lyrics in his daily love letter to me this morning (yes, he sends me little love letter emails every morning; one of the reasons I get out of bed each day).

He is by no means perfect (even he will tell you), but one thing’s for sure, he’s perfect for me.

My hope and prayer for our children is that they find a husband/wife that is half the person my Big Handsome is.

So…here’s to you my Big Handsome J Thank you for your love and devotion, for your integrity, your work ethic, your positive attitude, your chivalry, for your example to our children of what a great husband looks and acts like, and most of all for loving me through everything. You are my hero and I’m nothing without you.

P.S. Just told Big Handsome that I was doing a shout out to him on my blog. His response, “Better than being shouted at!” I just gotta love my Big Handsome J

http://youtu.be/FqLIy4bWFqU

Twenty Questions…and answers

Sometimes friends, family or people in general want to know what it’s like living with a chronic illness, or what my hopes and dreams are, or what I miss most. Here is a sampling of those questions and answers from my perspective.

1. What’s it like living with a chronic illness?

Well, I must admit that having somewhat of a diagnosis is nice, but I have to say that life as I once knew it is gone. I’ve had to go through a grieving process which I still believe I am in. I have learned the true meaning of “one day at a time”, sometimes for me, it’s one second at a time. I have had to try to find a “new normal” and that can at times be really challenging. I don’t want a “new normal”, I want my old normal. Heck, at this point, I’ll settle for half-way normal J

2. What have I learned through all this?

I have learned to appreciate the small things like waking up each morning, I’d rather that than the alternative! I’ve had to learn that, I am indeed, NOT in control anymore. I’ve had to learn to ask for help and rely on others, something I am definitely not used to. I have learned that I can and will live with this, and do it to the best of my ability.

3. What is the most disappointing news concerning this illness?

The most disappointing news is that there is no real prognosis. I have had to do much of the research on my own as many doctors in my area do not even know what POTS or Dysautonomia is, much less how to treat it.

4. What do I do to get out of a funk?

When I’m in a funk, I try to remember that while I cannot control my physical situation, I can control how I react and respond to it. I can choose to find joy and happiness in the things I can do. I try not to dwell on the negative, and sometimes that is so hard. I do admit to occasional breakdowns and many pity parties where I am the only guest L If I’m really in a funk (what most of us call a “flare”), I pray a lot, read, listen to uplifting music, meditate and try to rest through it.

5. What would I like to do if I was not ill?

Honestly, I’d be quite happy if I could take my teenage daughter to the nearest Starbucks, have a coffee and a day of shopping. I really don’t like to shop, but I know that that would be something that she would love to do, and I’d gladly do anything to make her happy. I would also like to enjoy life with my family once again. I would love to be consistent at just about anything. I would love to be able to drive…where I want and when I want. I would love not to have to rely on others so much. I would love to give Big Handsome a break for once.

6. What do I miss most?

I miss doing what I want, when I want the most.

7. What have I done that I never thought I’d do with this illness?

Start a blog. I really don’t think I would’ve started one if it hadn’t been for the hours spent in bed, online instead of out of the house enjoying life. I’m glad though, all the same. Something else I never thought I’d do after my illness was going on a cruise. My husband and I celebrated our 20^th anniversary on a Caribbean cruise and are looking forward to celebrating our 22^nd anniversary on an even longer Caribbean cruise this year. I took a bit to get my meds sorted out, but once I did, we had a wonderfully memorable time together. Our first cruise was really our honeymoon celebrated 20 years later as I was in college when we got married and didn’t have the time or the money for a honeymoon. I must say that it is such a blessing to be on a continuous honeymoon for 20+ yearsJ

8. What I think about the majority of doctors I have seen?

I think the majority of doctors, save my current GP are all complete idiots! I do have some bit of respect for the knowledge that they incurred through years of med school, but somehow, I find each and every one that I’ve seen to be severely lacking; whether it is in compassion, general bedside manner or just plain knowledge of disease and the body. I truly believe that everything happens for a reason. We are sick because there is a reason, an underlying condition. I think all too often doctors are only knowledgeable in treating the symptoms and not the illness as a whole, not treating us as a whole. If we don’t fit into their little box, or their med school books, well, we are SOL! It is really unfortunate and has left a really bad taste in my mouth.

9. What is the biggest adjustment I’ve had to make?

The biggest adjustment I’ve had to make is to learn to rely on others. I like doing things my way and I like being in control. I think someone upstairs  had something else in mind for me J

10. My favorite show?

I used to love medical shows, like House and the like. Now, I can’t even watch those anymore. I like to watch benign shows now; shows that I don’t have to think about, like the shows on HGTV. Since even little things set me off, I find it hard to watch murder and mayhem, medical shows, reality TV, etc. I admit that I do like to watch TV drama series though. I enjoyed “Brothers and Sisters”, that American Teenager one (can’t think of the name), British shows like, Bramwell, Downton Abbey, Doc Martin. When I watch something, I just want it to be numbing and I don’t want to have to think too much about it. Lame, I know, but when I have time to watch anything, it’s usually right before I go to sleep, so I don’t want anything too stimulating.

11. My favorite song?

 I just discovered Pandora and love it. I have new found favorites such as, The Fray, Coldplay, Daughtry, Nickelback. I guess they aren’t really new found favorites as I’ve always loved their songs, just didn’t know who or which band played them.

12. My favorite saying?

I have two favorite sayings: This too shall pass which I have tattooed on my inner left wrist to remind me of my late, beloved mother (she passed away 9-14-12). This saying is something she would always tell me when things got tough. She was a tough woman. A woman I admired and loved with all my heart. A woman that fought for seven long years after a botched hernia surgery. She went from being a relatively healthy, always vibrant woman (married to my father for almost 50 years, she passed almost one month to the day before their anniversary) to being an invalid on a feeding tube with only one lung; all because a doctor screwed up (I’ll have to save that story for another post). The other favorite saying is of course where I got the title to my blog from. It just came to me one day out of nowhere. I might be helpless at times, but I am never hopeless. Quite frankly, that is my mantra these days. With the love of Christ, I am never hopeless, and that is such a wonderful truth and feeling all rolled into one.

13. What do I do as far as work and career?

I began a career in Elementary teaching after college. I only taught a short three years before Big Handsome and I decided to enlarge our family. Since then, I have homeschooled my two children, now teenagers in high school. I’ve always quasi joked that had I had a job and my children went to school, I would’ve had to quit and homeschool them after my diagnosis anyway, so I skipped that whole step. I thoroughly enjoy teaching my children at home and wouldn’t have it any other way. They make me so proud!

14. Something you might not know about me?

Something many might not know about me is that I would love to one day open a coffee shop/bookstore. I would love it to be something along the lines that you see in movies, where there are shelves and shelves of books, an armoire with board games, and velvety couches and chairs all around and  people can just come in, relax with a good book, and a great cup of joe!

15. Something I really miss?

 I really miss driving…just going where I want to go, when I want to go.

16. It bothers me when people say…   

It bothers me when people say “Wow, you look great, have you lost weight?” First off, I’ve never really been overweight, so what are they trying to say?? I do take the compliment graciously, but in my head I’m thinking…”If I felt as great as you seem to think I look, I’d be on top of the world!”

17. The biggest surprise for me

One of the biggest surprises to me is that there are so many doctors out there that don’t know about POTS or Dysautonomia. I mean, how are there thousands of us on line with these same issues that nary a doctor can figure out? Boggles my mind!

18. What I’ve learned so far

 I’ve learned so far that you have to be your own advocate when you are diagnosed with an invisible illness. When there are few doctors that know anything about your illness, of which there are few, you have to research on your own and find things that work for you. I’ve learned that a good support system is essential and that friends and family might not always understand, but there are so many sites out there online with people just like me. That is such a comfort.

19. What I want most in life

What I want most in life is to gain control, or as much of it as I can with concern to my health and quality of life.

20. What I look forward to

I look forward to beating the odds!

I might be helpless at times, but I shall never be hopeless J

Here's To My Big Handsome

My Big Handsome is more than I could have ever wished for in a husband. He is loving, kindhearted, generous, doting, strong, full of integrity, oh, I could go on and on and on.

I call him My Big Handsome because he is just that, tall, dark and oh, so very handsome. He is so much more though. He is my soul mate, my best friend, lover, husband and a truly awesome dad to our children.

He has always been my sounding board and my voice of reason. When I was diagnosed with this horrendous illness, he was right by my side and hasn't left since. He is the epitome of strength. He constantly reminds me of his love for me and the fact that we will get through this together.

Every morning I sit in my covered porch and check my email, have my coffee, and enjoy some alone time before the gems get up. I look forward to this daily as My Big Handsome writes me little love notes each morning. Sometimes it's just a simple "I love you" other times they come in the form of poetry or song lyrics. They lift my spirits each morning and they are one of the reasons I get out of bed every day.

Having this illness has turned our household upside down. It keeps me, at times from enjoying even the simplest things in life. I hold fast to my faith and am so thankful that the Lord lead me to My Big Handsome. He couldn't have chosen better for me.

I know that living with me and my current physical state can be frustrating at times for My Big Handsome, but he somehow keeps it all together for all of us and I pray that the Lord blesses him immensely.

This is not to say that he is perfect, but I'll tell you one thing, he is perfect for me.

After 21 years of marriage, I can honestly say that to love and be loved is a gift, but to have that and be "in love" too is truly a blessing, and one that I don't take lightly. You see, love is not a feeling, it's an act of your will. I'm so grateful that My Big Handsome chooses to love me...warts and all.

Here's to My Big Handsome...I love you more than words can say.

 

My Big Handsome always knows when I need a pick-me-up!

(source: Pinterest)