Oh Happy Day

You might think that the title of this post refers to my physical state and my illness, but it in fact refers to my discovery of Pandora! I know…I’m a dork J I am such a tech idiot; it’s fairly embarrassing.

Actually, I guess you could say this post does have to do with my physical state. Because of this thing called Pandora, I’m humming and singing like a BEAST!! I really hope my neighbors don’t mind. They just better get used to it.

Who knew that one of the songs I love to sing at the top of my lungs is from a group called “Hoobastank”? I just can’t explain my happiness. It really doesn’t take me much J Who doesn’t love to hear Snow Patrol’s “Chasing Cars” or The Fray “How to Save A Life”? How can one hear these songs and not sing at the top of their lungs??? Furthermore, people with POTS shouldn’t sing (or so “they” say)…I say BLAH! I’m gonna sing and sing my heart out from now on!

I have to liken this to the discovery of sliced bread at the very least, maybe even the discovery of penicillin. I mean, the program seems to know exactly what songs I want to hear from the bands I love. Granted, I researched it and realize that it is all through math algorithms, but still…AWESOMESAUCE, never the less! Now I have a new reason for when my children ask me, “When will I ever need this stuff?” when referring to math.

Seriously, who doesn’t want music without all the commercials (minimal, I should say) and be able to choose the music you like and make up your own stations for whatever mood you are in. I literally feel like I’ve discovered a whole new world…the world of music! Music I actually want to hear without having to change channels every time an annoying commercial comes on. Oh, I think I’m in heaven. In fact that is one of my stations…

I think I feel a new Top Ten Tuesday list coming on J

Hope you all find joy in the little things, like the smile you get on your face when you hear a song that just resonates…and you begin to belt it out even if it is a little pitchy and should be reserved for the shower only perhaps. I say, don’t save it, don’t hold it in any longer; SING until your heart’s content. I’m gonna sing, and I don’t care who hears me!

www.windstarembroidery.com

Top Ten Tuesdays

Top Ten Pronunciation Irritations

1. “supposebly” instead of supposedly

2.” libary” instead of library

3. “ungion” instead of onion

4.” birfday” instead of birthday

5. “aks” instead of ask

6. “charasteristics” instead of characteristics

7. “acrossed” instead of across

8. “breakfrest” instead of breakfast

9. “excape” instead of escape

10.”irregardless” instead of regardless

Here’s one just for fun: “Your anus” instead of Uranus J

I try so hard not to correct people because I was taught that it is rude. I do however have to laugh at the ignorance, which is also rude…I know.

Disclaimer: I am far from perfect and don’t claim to be. I do welcome correction, especially if I can learn something new and not look like a fool!

 

Homeschooling

 

 

It seems there are some that read my blog that homeschool as well. Many times I am asked the question: “How do you homeschool while sick?” Well, the simple answer to this question is that I do what I can when I can do it and try not to worry too much about the rest.

 

I have two children, a dd (16) and ds (15). They have never been to school, not for lack of asking mind you (mostly on my dd’s part), but I’ve personally taught in the public schools in our area and quite frankly, I don’t trust my children’s education to just anyone. Don’t get me wrong, there are definitely some great teachers out there, however it has been my experience that they are few and far between. People homeschool for many reasons, some of which are cited here http://nces.ed.gov/pubs2006/homeschool/parentsreasons.asp . I know this is a fairly old survey, however I really don’t think too much has changed in the way of reasoning over the years.

 

Thankfully and gratefully, most of the responses I get when people find out I homeschool are positive. I genuinely enjoy being with my children. I enjoy teaching them. I enjoy watching them learn and grow. I know what is going into their minds because I have control over most of it (concerning academics that is). This is not to say that my children live in a bubble, that I only show them the “rosey” things in life. I feel that we have given them a very well-rounded education. When homeschooling (at least in our state), a person can teach whatever they want, however they want, where ever they want, use whatever materials they want, etc. Plus, the teacher-child ration is usually low, in my case it’s 1:2. And not for nothing, if we lived in an area with stellar schools, we might just consider sending them, but we don’t, so, why mess with a good thing? As far as we are concerned, why try to fix what isn’t broken?

 

How do I homeschool with my illness? Like I stated above, I do what I can, when I can and try not to worry too much about the rest. Since my children are older now, they can pretty much accomplish their work independently and I just supervise and help when needed. Since being sick, our schoolroom is now my bedroom, more specifically, my bed. We still do our math lessons here, and have for the past 3+ years. I have a beautiful schoolroom complete with computer station, white board, table and chairs, a closet full of school/craft paraphernalia and a bookshelf loaded with hundreds of books. As of late, our table has become a catch all unfortunately. Again though, as my kids are older now, they don’t require me to really “teach” them anything; I’m just sorta their guide and helper when needed.

 

It is hard at times, I will admit, when I have comfy beds, technology and TV to compete with along with not feeling up to par many a day. Although, through it all, the ups and the downs, I know my husband and I would do it all over again (perhaps changing just a few things), but all in all we are happy with our decision to homeschool. We can tell from test scores and such that our kids are right on target if not ahead. One of the best rewards was when our dd expressed that she would like to homeschool her own children one day and has even started a Pinterest board with ideas. That warms my heart so, and encourages me that I just might have done some things right by them.

 

Homeschooling is not for everyone, but it is one decision that we are truly happy we made.

Had to Share

 

Wonder what all this talk of Spoons is about? Check it out and share with family and friends!

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

PDF Version: http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf

 

 

 

 

 

Top Ten Tuesdays

There are so many books out there, I can scarcely pick 10, but here is my attempt in no particular order:

 

Top Ten Books I Can Read Over and Over

1. The Holy Bible

2. Don Quixote

3. The Canterbury Tales

4. The Great Gatsby

5. Great Expectations

6. Fahrenheit 451

7. The Illustrated Man

8. Anything written by Beverly Lewis

9. The Time Traveler’s Wife

10. Sundays at Tiffany's

Grieving Continued…

I’ve continued to read “Coping with Chronic Illness” by H. Norman Wright and Lynn Ellis and have received such encouragement and blessing; I just have to share it.

I’m still reading about grief and what it means for a person dealing with chronic illness. Sadly, this past year I had to deal with grief in the form of the untimely death of my beloved mother. Suffice it to say that I have had to deal with grief in the form of death, and now I have to deal with it in the form of a life altered by chronic illness. Even though the two are quite different, the process of grief is basically the same.

I’ve learned that I am “stuck” in this whole grieving process. Instead of just going through the process, I’m holding on to the feelings of loss and what might have been. When we get “stuck” in this area, it is hard to dig ourselves out of this pit of despair. Emotions are supposed to help us cope and move on, but in some instances, while they are meant to be here for a season, at times they seem to linger. Sometimes we just can’t seem to let them go, hence the “stuck” part. At times these emotions can take up permanent residence and prevent us from moving forward, finding and implementing new coping skills.

So… I am “stuck”. I don’t want to be, but I am still grieving the loss of my old self. It is hard for me to find my new “normal” and to get on with my life. I miss the old me, all the things I used to do and be able to do that now don’t even seem to be in my future anymore. I grieve for my husband and my children and the wife and mother that they once knew, but is now gone and may never return. For the sake of them and myself; I must regain, reboot and reorder my life. I must pick myself up by the bootstraps and keep on keeping on. I owe it to them and to myself. In order to move on I must face the painful reality of my situation. I must overcome my denial and wishful thinking that things will ever be the same again, because the simple fact is, is that things might never be the same. Please don’t mistake this for hopelessness; as I’ve always said, at times I might be helpless, but I shall never be hopeless!  I have no control over my body or my physical state; what I do have control over, however is how I choose to react and respond to the issues at hand. One day at a time, one hour at a time, one minute at a time, and sometimes one second at a time.

In the above book, the authors ask and answer this question: “What can you expect from grief?” (P.104-105)

·        Your grief will take more time and energy than you ever imagined.

·        Your grief will involve many changes.

·        Your grief will show itself in all spheres of your life.

·        Your grief will depend on how you perceive your chronic illness losses.

·        You will grieve for what you have lost already and for what you have lost for    the future.

·        Your grief will entail mourning for the hope, dreams, and unfulfilled expectations you held.

·        Your grief will involve a wide variety of feelings and reaction, more than just the general ones often depicted with grief, such as depression and sadness.

·        Your losses will resurrect old issues, feelings, and unresolved conflicts from the past.

·        You may experience a combination of anger and depression, such as irritability, frustration, annoyance, and intolerance.

·        You will feel some anger and guilt--or at least manifestations of these emotions.

·        You may experience “grief spasms--acute upsurges of grief that occur without warning.

·        You will have trouble thinking about memories, organizational tasks, intellectual processing, and making decisions, depending on your illness.

·        You may feel like you’re going crazy.

·        You may find yourself acting socially in ways that are different from before.

·        You may feel isolated.

·        You may find yourself having a number of physical reactions other than your illness.

·        Others will have unrealistic expectations about you and may respond inappropriately to you (19).

·        The uncertainty of what the future hold denies you the luxury of grieving fully (20).

(19) Rando, Grieving, p. 19, adapted.

(20) Chris McGonigle, Surviving Your Spouse’s Chronic Illness” (New York:

        Henry Holt and Co., 1999), p. 20.

I have a loooong way to go, but go I will, defeat this grief, find the new me and joyfully exchange it for the old.

This is my hope, not only for my family and me, but for all who suffer with chronic illness.

After all, we may be helpless at times, but we shall never be hopeless J

Top Ten Tuesdays

I have decided to do a blog post called “Top Ten Tuesdays”. Since I am fairly self-centered, these lists are going to be Top Tens that relate to me. The first part of recovery is admitting you have a problem, right?? Since I’ve chosen for this blog to be relatively anonymous, many people don’t know that much about me. Where can I let others in without (hopefully) being judged if not my own, personal blog?  These lists will be in no particular order because that would just take too much energy.

Some lists will be serious; some will be silly; it will all depend on how I’m feeling on that particular Tuesday.

Here goes my first Top Ten:

Top Ten Things That Annoy Me About Dealing With A Chronic Illness:

(This should probably be The Top 100 things…)

1. Trying to find my “new” normal. I’d love to just have my old normal back. I’d even settle for half-way normal; I’m not too demanding

2. People asking me “How are you?” I know they mean well most of the time, however I think that this particular question is overrated. I always pause before answering. I’d think to myself, do you really want to know, or should I just lie and say “I’m fine.”? I usually choose the latter because the person probably doesn’t really want to know how I am and/or I don’t have the time or energy to explain how I’m really feeling.

3. When people say “Wow, you look great! Have you lost weight?” This comment at first glance is one that I think most people, women especially would find a compliment, however when dealing with chronic illness, this comment can set off a variety of feelings. In my case, unfortunately they are not often too positive. First off, if I felt remotely as good as someone might think I look; I’d be doing better than alright. Just because I have make-up on and a pressed skirt doesn’t mean that I’m not falling apart on the inside. Secondly, yes, I have lost weight, but certainly not because I’ve tried. I would gladly take the thirty pounds I’ve lost over the last few years and tack it right back on (and then some maybe) if it meant I could kick this whole POTS thing.

4. When someone assumes that I must be cured because they saw me out and about in town. If I’m out and about, I’m usually accompanied by Big Handsome (aka my chauffeur) and/or my children (my dd being the fill-in chauffeur). Most of the time he/they has/have to practically drag me out of the house because if he/they  didn’t, I’d surely become a hermit. It’s pretty sad when taking a trip to the grocery store is an accomplishment.

5. Not getting enough sleep. I have constant ringing in my ears (tinnitus) which is akin to having a swarm of vicious crickets swirling around in my head. There is no way to get rid of it/them. I so wish they’d find somewhere else to chirp. As a result, I have an intimate relationship with Netflix via my Nook. I’ve watched so many shows and movies, I’ve lost count. I watch until my eyes can no longer stay open and many a morning I wake to find my Nook, on top of, beside, or underneath me.

6. Missing out on the lives of my children. As my children grew into teens, I so looked forward to the time when I could take my dd out to Starbucks and enjoy a coffee and conversation about life or just go to the mall for some girl-time. I would love to take my ds to the nearest army surplus and/or gun store (he’s a collector) and have some mother-son time. We used to be so active together going on field trips, park days, science classes at the local hammock, music lessons, gymnastics, church functions, playdates, going to museums, taking the train downtown and so much more. I miss those days terribly and would give anything to have them back.

7. Feeling the need to say “I’m sorry” all the time.

8. Anxiety annoys me. I have anxiety about my anxiety and I don’t like it one bit.

9. I am annoyed by the fact that I can’t take care of my family the way I used to. I used to cook, clean, school the kids, do the yard work complete with mowing and weedeating, do the grocery shopping and any other shopping that needed to be done. Now it seems as though I can hardly do a thing without some sort of assistance. I guess it annoys me that I am so needy.

10. This has nothing to do with dealing with chronic illness, but annoys me none the less: slowing to a stop to let someone walk across the way and them not even bothering to acknowledge your act of kindness. Seriously, it annoys me that people can be so rude!

Be on the lookout for my next installment of Top Ten Tuesdays J

Life Is What Happens When You’re Busy Making Plans

Life happens when you’re busy making plans is something Big Handsome always says. It is so true at times. Before I got sick, I was a big-time planner. Practically everything I did had to be planned, still does to some extent, but I am slowly, painfully learning that life happens when you’re busy making plans.

When you’re diagnosed with a chronic illness and your life is turned upside down and basically what you used to do and be seem to be nonexistent; it makes it kinda hard to plan for anything. Sometimes the opposite happens and I tend to want to plan everything that is going to happen. This can be nearly impossible and can really wreak havoc on life in general.

I am basically and pretty much always have been a control freak. I like to know what is going to happen, when it will be happening, how long it will take to happen and when it will end. With chronic illness, those questions almost always go unanswered. This probably stems from my father who would always have every vacation planned down to our bathroom breaks (I’m not quite that bad). I’ve had to learn to “go with the flow” which is NOT easy for me in the least.

We have family members that are quite spontaneous. It drives me NUTS!! They make plans on the spur of the moment that include us and I am now finally comfortable to decline most invitations. My problem comes in the form of resentment when this happens. I guess I’ve always held to the idea of, “A lack of planning on your part doesn’t constitute and emergency on my part.” I realize this is a whole other story; I’ll probably save that for another blog post in the future.

Even still though, I try to control things in my life. I don’t think this is too crazy, because in the life of a person with chronic illness, there is so much that we cannot control, I feel the need to control the few things that I might just have control over.

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)