Just Another Day in Paradise

I’ve mentioned before that I was on a hiatus of sorts from my illness. I found myself spending an inordinate amount of time dwelling on my vital signs, symptoms, research, trying to find new doctors and on and on and on. For me it was quite literally sucking the life right out of me. During this time, when I was realizing that certainly there has to be something out there that is positive; I ran across a Facebook group called POTSY Paradise. It began as a group for those with Dysautonomia, but has since blossomed into a group for those with chronic illness.

Check it out: https://www.facebook.com/groups/potsyparadise/

“POTSY Paradise is a place where those with a form of Dysautonomia, and related conditions, can come together to talk about their interests, dreams, hopes, lives. While we have Dysautonomia, or take care of someone who does, we rarely talk about it here. In Paradise, we are more than our illness. We are a group of people, who share a unique bond--one founded  in illness, but kept together through friendships that form by sharing more about ourselves. All that is said in POTSY Paradise, respectfully stays in POTSY Paradise. This is our GETAWAY from our illness, a place we can talk and be us, not our illness. Welcome, my friends, to POTSY Paradise.”

POTSY Paradise is now one of my “go-to” sites. There, I’m able to share in life outside my illness. I’m able to share about small victories, my pets, my family, my newly found artistic side. Through this site, not only do I feel free to share about my life, but am truly blessed to share in others’ lives as well. POTSY Paradise is truly an uplifting, encouraging blessing that I am so thankful to have happened upon. Truth be told, I really don’t believe that I just “happened” upon it. I believe I was lead to it, and for that I am surely thankful.

Recently an article was published in “The Lima News” (Ohio) about the site and its administrator’s story (Linda Burgess Parsons). It’s a great article and I’m so glad to see that word about this disorder is getting out there.

Check out the article here: http://www.limaohio.com/news/news_lifestyles/468535/Just-another-day-in-paradise

 

So…a huge thank you and the richest of blessings to POTSY Paradise for a lovely respite from this disorder.

My Beloved Ma

Yesterday, September 14^th, marked one year since my beloved mother left this earth at the age of 68. I still cannot fathom that she is gone. When I think of her, I still think of her in her chair in her living room, draped in her prayer blanket, handmade by the ladies in her church, watching TV. Of course I try not to remember the myriad attachments she had, like the oxygen machine, her feeding tube, and all the health paraphernalia she had on the table beside her.

I try not to remember the tired look in her eyes, the effort that was expended when she would use her walker to walk one lap around the kitchen, or her labored breathing due to only having one lung. I don’t like to think on these things, but it is so hard as she was sick for so long. I try not to dwell on what was supposed to be a routine hiatal hernia surgery gone terribly awry on April 22, 2005.

I try not to focus on the proximal distance between us because she and my father lived halfway across the country. I don’t want to think about the coulda’s, woulda’s and shoulda’s.

Instead, I shall celebrate her life and the joy that she brought to my life, my husband’s and my children’s.

She was an awesome mom; she was “Ma” to me. My Ma was not only my mother; she was my friend, my confidant, my protector, my cheerleader and so much more.

My Ma loved her husband, my father for 50+ years. She loved her four children. She loved her daughter’s-in-law and her son’s-in-law.  She loved each and every one of her 13 grandchildren. She loved to brag about all of our achievements, and she was always there to cheer us on when we stumbled.

My ma was the one I always went to when I had a question about anything from flowers to recipes to remedies. She was my go-to gal. I could always count on her. I find it such a shame that she missed the whole iPhone, FB, Skype, YouTube, Pinterest etc. era. She would’ve loved it all.

I wish I could have FB’d with her, and I would have on a daily basis. I would have loved to share a funny video via YouTube with her just to hear her contagious laugh. I would have loved to Skype with her so that I could see her beautiful smile. I know if she could have Pinterested, she would have had a bazillion boards.

My Ma was a beautiful soul. I miss her daily. I think of her often. I miss her affirmations of love. I would love to hear her refer to me as “a neat kid” one more time.

Excerpt from my dad’s thoughts about yesterday…beautifully articulated:

“To my dear sweet gentle bride how I have missed you this past year.

I can’t believe that it has been a year since you left this life. It seems like yesterday when you asked us to gather around your bed for one last time. This wasn’t the first time we would come from out of town prepared for the worst but still praying for the best.

Over seven and a half years of recuperation this scenario was repeated several times. But, this time you lowered your head slightly and wrinkled your brow a little as you gave a stern look in our direction, as if you were about to scold us, as only a mother could do. You pointed to each one of us and made us promise to look after each other when you were no longer there to watch over us and protect us. That very moment we all did take up that solemn promise to you and agreed to do as you asked. Now, it is up to each of us to individually search our hearts and know whether or not we have kept that promise!

You are sorely missed by those lives you touched and by all who knew you and loved you. But, none more than the one whom you built a life with. A life of thousands of thoughts, plans, events and dreams that we knit together with each other growing and building that life. Hardly a day goes by that my memory doesn’t dig deep into the past and somehow recall one of those many thousands of something’s that we shared together over those fifty years we were together.

I praise God for that life he gave to us. May God forever rest your soul. I love you sweetie.”

I praise God for my mother’s and father’s testimony of love and devotion. I will always miss my Ma, but it will be with the fondest of memories. May her beloved soul rest in the peace of Jesus today and always.

Namaste Mental Health and Wellness Center

Still on hiatus, but wanted to share my brother's new business out in California, in the LA area.

You can learn all about it by going to the following link: http://namastemhwc.com/
Check it out!!

namastemhwc.com

Hiatus

I haven’t been on lately to write. I’m going to take a bit of time off to regroup, actually a bit more time, I should say. I just haven’t had the mojo for writing lately, and since the only thing I am completely consistent with is inconsistency, I figured I’d just take a hiatus of sorts, or a continued hiatus it would seem.

I’ve basically been spending my time being extremely lazy. I wake and drag my sorry, sore butt out of bed to get my coffee and check all things online. I mean, I get the laundry done each week, but that’s about the extent of my life aside from spending an inordinate amount of time on the computer, obviously not writing.

Of course the first thing I do is check my email and read my daily love note from Big Handsome. Then, I commence the deletion process of all the silly emails that I get because I might have clicked on something-or-other while online. Note to self: make use of the “unsubscribe” button.

Hubs is still going through his Viral Labyrinthitis which is driving him nuts (and me too…shhhh, don’t tell him I said that; it’s really only driving me nuts because I can’t do anything to help him out). He hates feeling out of control and I don’t blame him. Although I have to say that one good thing that has come out of this whole ordeal is that he now has some sense of understanding me and my situation; I truly hope that does not come off as selfish.

Quite frankly, there is only so much research, questioning, and worrying I can do regarding my illness, and I’m finding out that I am so much more than my illness, thanks in part to an awesome new FB page I found, check it out: https://www.facebook.com/groups/potsyparadise/?hc_location=stream.  Believe me, I can commiserate with the best of them and am fully willing to do that if I can be of some encouragement along the way. At this point in time though, I feel the need to step back, enjoy the things I can do and focus on ways to improve my situation.

Plus, there is so much going on, what with the new school year starting up soon, planning my homeschool co-op classes (Art Appreciation and Chemistry), organizing/cleaning my house, getting up the motivation to begin working out again, trying to be creative with scrapbooking, art journaling, drawing, etc., in addition to gearing up for a much needed vacation soon.

I bid you all adieu for now. My hope is to return shortly with a better handle on my life and the ability to see beyond my illness to the person I know I can be.

I might feel helpless at times, but I shall never be hopeless :)

Top Ten Tuesdays (Yes, I Realize It's Wednesday)



Well, I’m off the ball yet again, surprise, surprise. I wasn’t able to post my Top Ten Tuesdays yesterday, so I’m doing it today and there aren’t even 10. I thought about calling it Wop Wen Wednesdays, but decided against it. Maybe I should call it Top Eight Somethingorother, but that just sounds corny.

So much has been going on around here including, but not limited to, health issues all around, crashed computer, new computer won’t fit old digital camera card, having a time of figuring out new system on said computer, blah, blah, blah.

I wanted to share with you my newest hobby. Sharpie pens are my new best friend. I don’t consider myself all that creative, but have found that I love to draw whimsical trees…go figure. I also place biblical verses that have spoken to me over the years of my illness within the branches. It is quite relaxing for me and I can take my book and pens with me everywhere, like to the hospital while I wait anxiously for Beauty Queen to get her cardiac MRI/MRA, or with Big Handsome while I wait for him to get his noggin scanned, and even if I'm just sittin' around the house contemplating just how much more screwed up the universe can make my life.

When I’m feeling especially anxious, and providing my brain is cooperating with my eyes and hands at that particular moment, I have found that drawing really helps me to relax. I love that I can go back to these special verses that have helped me in the past to quell my spaziness.

So here’s my Top Ten Tuesdays being posted on Wednesday and don’t even consist of 10 items. UGH, I think I need a nap for about the next 10 years; someone please wake me when Big Handsome is back to normal, Beauty Queen is feeling better and a cure for POTS has been found.

Hope you enjoy. Let me know in the comments what types of things you do to relax while dealing with chronic illness.

P.S. Sorry for the lack of photography skill...

“Be of good courage, and He shall strengthen your heart, all you who hope in the Lord.” ~Psalm 31:24

“Be joyful in hope, patient in affliction, faithful in prayer.” ~Romans 12:12

“Now may the Lord of peace himself give you peace at all times and in every way. The Lord be with all of you.” ~2 Thessalonians 3:16

“The Lord is good to those who wait for Him…” ~Lamentations 3:25

“The name of the Lord is a strong tower; the righteous run to it and are safe.” ~Proverbs 18:10

 

“I have set the Lord always before me. Because He is at my right hand, I will not be shaken.” ~Psalm 16:8

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.” ~Matthew 11:28-29

 

Still in the works…



Top Ten Tuesdays

Alrighty then…I’m finally on the ball for today’s Top Ten Tuesdays!!

This week I decided to put some of my favorite quotes up. Some are funny and some a bit more serious, but I feel they are always helpful and wanted in my world. I’m always on the lookout to try to find the humor in things (even in this more-than-pesky illness) and to find encouragement where I can. To my knowledge these quotes are from authors unknown.

Hopefully you’ll get a laugh or some encouragement from them also.
Be well J

Top Ten List of Quotations that bring me Laughter and Encouragement:

1. “May your life be like toilet paper…Long and useful.”

2. “If at first you don’t succeed, then skydiving definitely isn’t for you!”

3. “A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort!”

4. “Nobody trips over mountains. It is the small pebble that causes you to stumble. Pass all the pebbles in your path and you will find you have crossed the mountain.”

5. “I’ve learned that it’s those small daily happenings that make life so spectacular. So start enjoying those little things in life—it does make a difference.”

6. “I’ve learned that the easiest way for me to grow as a person, is to make sure that I surround myself with people smarter than I am.”

7. “I’ve learned that life is tough, but I’m tougher!”

8. “Time goes by so fast; people go in and out of your life. You must never miss the opportunity to tell these people how much they mean to you.”

9. “Defeat may test you; it need not stop you. If at first you don’t succeed, try another way. For every obstacle there is a solution. Nothing in the world can take the place of persistence. The greatest mistake is giving up.”

10. “If you cannot help worrying, remember that worrying cannot help you.”

A few bonus quotes, because I just can’t help myself:

** “Life can either be accepted or changed. If it is not accepted, it must be changed. If it cannot be changed, then it must be accepted.”

**”To reach a great height, a person needs to have great depth.”

**”You have to do what others won’t. To achieve what others don’t.”

**”Tears are words the heart can’t express.”

**”If you cannot help worrying, remember that worrying cannot help you either. Today is the tomorrow you worried about yesterday. If you worry you die, if you don’t worry you die, so why worry?”

**”Everything will be alright in the end, and if it’s not, it’s not the end.”

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

Top Ten Tuesdays

Top Ten Tuesdays have once again sneaked up on me. UGH!! Will I ever catch up?? That is the question. I can only do what I can when I can.

Last week I wrote a letter to POTS telling it exactly how I felt. Much of it was negative as that has been most of my experiences living with this dreaded disorder. There have been, however some positive aspects to having/dealing with chronic illness. Thus, my Top Ten Tuesday list will be about things I have gained and learned along this tumultuous journey of living with POTS. Here they are in no particular order:

Top Ten Things I’ve Learned through This Illness

1. I have learned that not all doctors are idiots. Yes, you heard/read correctly. Even though there are many out there that I have had negative experiences with, there are those that attempt to listen and help.

2. I have had to learn patience. Patience is a virtue I have never really possessed, however in these last few years I have had to learn that it is easier and healthier to be patient than it is to be worried and aggravated.

3. I have learned that I am a stronger person having had to deal with the ups and downs of this illness.

4. I have learned the meaning of true love and being in love through the selfless acts of my Big Handsome. He has shown me what “in sickness and in health” really means.

5. I have learned to cherish the little things. Sometimes the little things are all I get these days and I have to cling to them.

6. I have a renewed relationship with my Savior. I shudder to think where that relationship would be had I not been diagnosed.

7. I have learned the need to rely on Him daily and am better for it. He will never leave me nor forsake me.

8. I have learned that it is important to be one’s own advocate. No one is going to do the work for me.

9. I have learned that while I can’t control my physical situation, I can control the way that I react and respond to my illness.

10. I have learned that I have the ability to choose happiness.

Bonus: I have learned that though sometimes I might be helpless, I am NEVER hopeless J

Gettin' Your Craft On

So, I’ve been reading a bunch on the forums and one of the threads was about creative outlets and coping. There were so many good ideas on there. Much of the time, many of us are housebound or mostly housebound and sometimes even bed bound, so it’s really helpful to find new and interesting ideas for things to do instead of the same ol’ same ol’, like surfing the web, researching our weird symptoms, and social networking.

Some people enjoy crocheting and knitting, something I’ve always wanted to learn. Some enjoy reading which I do a lot of. Some enjoy painting, art journaling and getting their craft on.

I like to scrapbook when I’m up to it and have the time. Sometimes my scrapbooks don’t even have any pictures. The following scrapbook is one I started on a while ago (haven’t finished yet) and is an inspirational scrapbook. I found all sorts of inspirational sayings and Bible verses that speak to me on the net. I placed them decoratively into a spiral book that I am going to fix up so that it can stand on a shelf and I can flip the pages daily. Here is a sample of what I’ve been working on:

(Cover)

 

 

 

Enjoy!!

Hope each and every one of us can find our creative sides and get our own craft on!!
We might seem helpless at times, but we are never hopeless!!



Top Ten Tuesdays

I’m giving a shout out to https://www.facebook.com/#!/LupusAndMe?fref=ts today. I do not have Lupus, but I so sympathize with those that do. I do however suffer from a chronic illness (POTS) and absolutely love the encouraging words I find on this site daily. Check them out on Facebook!

Here is my list of Top Ten pics as found on Lupus and Me that have given me encouragement, laughter and hope! Keep up the great work, Lupus and Me J

 

 

 

 

 

 

 

 

 







Perhaps the last photo is one that is most resonating at this present time in my life, and it is my wish that it brings hope to us all.

WE ARE NOT ALONE!!

We might be helpless at times, but we shall never be hopeless! J



Top Ten Tuesdays

I’ve been feeling a bit better as of late, at least on the lower end of the “crappy scale”, and since I wanted to post something more positive, here it is:

May you all be blessed today and always J

Top Ten Biblical Verses That Comfort Me

1.      “The Lord bless thee, and keep thee: the Lord make His face shine upon thee, and be gracious unto thee: the Lord lift up His countenance upon thee, and give thee peace.”—Numbers 6:24-26 (KJV)

2.      “…but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”—Isaiah 40:31 (NIV)

3.      “...This is what the Lord, the God of your father David, says: ‘I have heard your prayer and seen your tears; I will heal you.’”—2 Kings 20:5 (NIV)

4.      “Be joyful in hope, patient in affliction, faithful in prayer.”

           —Romans 12:12 (NIV

5.      “God is our refuge and strength, an ever-present help in trouble.”

          –Psalm 46:1 (NIV)

6.      “My flesh and my heart may fail, but God is the strength of my heart and    my portion forever.” –Psalm 73:26 (NIV)

7.      “Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.” –Matthew 11:28 (NLT)

8.      “The Lord gives his people strength. The Lord blesses them with peace.”

           –Psalm 29:11 (NLT)

9.      “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

           –Jeremiah 29:11 (NIV)

10.    “I can do all this through him who gives me strength.” –Philippians 4:13 (NIV)

Small Victories

When one is suddenly struck with some weird-off-the-wall illness that nary a doctor can figure out, so we have to do all research on our own and figure out how to live a semi-normal life…we tend to learn to depend on small victories.

My Big Handsome had a conference he had to go to a couple counties up (few hours from home) for work. We decided to turn it into a mini-beach vacation, plus we could get in a small family reunion as well with the in-laws and extended (military) family that happened to be visiting the states from Germany.

While Big Handsome was at the conference, I was to take the kids to the local Art Museum. I decided that this is what we would do as I am teaching an Art History class next year, and who doesn’t enjoy an Art Museum (except for those of us who have a hard time driving on our own, driving on our own in a new town, driving on our own in a new town with a bunch of freaking one-way streets, standing for long periods of time, and just plain freaking out when put in new situations)?  This means that I would have to drive, with the kids, on my own, in a town I’ve never driven in, did I mention the freaking one-way streets??!! Mind you, I did do a bit of research beforehand and attempted to commit to memory the satellite map where I’d be going (which can be dangerous for a normal person, much less one with frequent brain farts). And, no, I don’t have one of those fancy phones that one can talk to or get GPS or any of that really cool stuff. Still though, for someone that doesn’t even drive locally, this was definitely going to test my, well, everything.

I began to feel the anxiety earlier in the week. The morning we left I just rode in the car, doubled up on meds of course, and hoped that everything would turn out ok. We arrived at the convention center where we dropped Big Handsome off and our choices were to pull around the block and park for 2+ hours or head off on our own to the museum.

We chose the latter. We made it there safely after a few necessary turn arounds (which under normal circumstances can send me into a complete panic attack). We had a wonderful time at the museum, viewing many art pieces from the artist’s that we will be studying soon. I was so glad we went. I didn’t panic the entire time. We had just enough time to casually walk the entire museum with a bit of time to spare in order to get back to the convention center on time to pick up Big Handsome.

I must say that I was so stoked that I was able to take the kids to the museum and not freak out!

We all need to look forward to, learn to appreciate, and never take for granted the small victories J

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