Small Catch Up

Ok...So it's been a while, a LONG while...Life has a way of getting a hold on you, and sometimes you just have to ride the wave. Here are some of the things I've been up to; some happy, some sad, some frustrating:

~  My dad was able to visit us over Christmas. We had a great time down at "Big Handsome's Hideaway" in Key Largo, until the next event happened...

~  My brother passed away on December 29, 2013 suddenly. It was a complete shock to the entire family and "sad" just doesn't do my feelings justice. He lived on the other side of the country and we didn't see each other much at all, in fact the last time I had seen him was the year before when our beloved mother passed away. I wouldn't go to the funeral; I just wasn't ready to say goodbye. I am still not ready.

~  In January, I began teaching my Art Appreciation class that I taught to high school homeschoolers at our Co-op. It was fun and interesting. I'd never taught Art, nor had I ever taught high schoolers.

~  It was Beauty Queen's senior year of high school, so we were quite busy getting everything together, taking SAT, ACT, ordering diploma (which I still haven't done yet), getting senior pictures taken, getting ready for Senior Prom, getting ready for Graduation, and on, and on, and on.

~  Spending weekends at Big Handsome's Hideaway. Big Handsome closing in part of our downstairs breezeway to make a lovely outdoor patio. We are still working on that.

~  Healthwise, I've been doing ok. Since teaching my Art Appreciation class, I've been bitten by the "Art Bug". I've been busy watching all sorts of YouTube videos, making my own art journals, junk journals, painted papers, and generally just experimenting. I try to do art daily. It takes up a lot of my time, but it is something I really enjoy doing and there is something so therapeutic in creating something daily. I've also joined a FB group that is all about art journaling. I absolutely love it and all the talented people that are on there. I get daily inspiration and support from them.

~  I've also tried to keep in touch with my illness sites: Coping with Chronic Illness and POTSY Paradise. The admin is such a lovely lady with such a tender heart and a real gift for support and encouragement. I truly cherish the friendship that we have cultivated over the last year +.

~  Big Handsome has had his own health issues as of late. He began last summer with headaches, pressure, vertigo, dizziness, et al. At first he went to and ENT because we thought it might be sinus related. Well...many appointments, tests, medications, procedures later we found that nothing was helping. He finally went to a Neuro and found through an MRI that he has herniated disks and a host of other issues in his C-Spine area. Two choices are: surgery or pain management. Haven't really done anything about it all as of yet. Plus he spent five days in the hospital recently with another bout of pancreatitis.

~  School year is starting up again. I've now got just my teenage Sonshine to school this year. He's also beginning his college career and getting him registered was a nightmare. I still haven't enrolled him in his Virtual School classes, and I don't even know if I have all of his books yet. Summer has gone by way too fast.

~  I will be teaching again at the Co-op in January and I haven't even begun to plan for it. Usually I'm all prepared, get all my planning done over the summer, but that hasn't happened this year. It's a Creative Writing class. I shall be teaching the high schoolers again. We are going to create Autobiographies. Hopefully I'll get the darned class planned before it actually starts.

I'm sure there is a bunch I'm missing, suffice it to say, I've been busy. Such is life though, eh? I guess I should be thankful that I can say that I've been busy. I'm totally thankful that I haven't had to spend nearly the amount of time in bed as I used to.

Sorry I haven't been on here to update. I'm going to try to post more often. I've got to come up with some Top Ten Tuesday lists as well. Hopefully, it won't be so long before my next post.

We might feel helpless at times, but we are never hopeless! 

 

One of my Art Journal pages

Warning...Pity Party

Okay, am I the only person on this earth that absolutely abhors summertime? I don’t mean the heat either. I mean the endless days with nothing to do. Of course there are a zillion things I could be doing, but what’s the point really? I’m fairly housebound and cleaning something really isn’t on the top of my priority list at this moment in time. I’m lucky to shower every day; that can be considered cleaning…right?? I feel like a prisoner in my own home!

During the school year, since I home school my two teens, there is always plenty to do. Lesson plans, helping with schoolwork, keeping the kids in line, record keeping and such continue to keep the kids and I quite busy. Albeit, they can’t even really participate in outside activities as I can’t guarantee that I’ll be able to drive them to and from.

Plus this year I have committed to teaching in two home school co-ops (I know, I must’ve been on too much medication at the time!) I will be teaching Art Appreciation to high school homeschoolers in the spring, but I need to begin preparing now; I just wish I had the motivation. These classes are to be counted for .5 credits for high school graduation (no pressure). The thing is, is that I create these classes from scratch. I can’t even count all the hours I put into the planning. I also committed to teaching Chemistry to high school homeschoolers. The only good part about this one is that there are five other moms involved and we only really have to teach 4 chapters a piece.

Anyhoo, back to summertime, and well, life itself. I just feel so guilty when summertime comes around, since I don’t drive and can’t be one of those mothers that take their children here and there and everywhere during the summer break. Don’t get me wrong, I’m a firm believer that children don’t need to be entertained every second of every day, but when I have a teen son who plays video games for so many hours on end that I worry he’s going to get a blood clot, something’s gotta give. I just don’t know what or how to go about it.

Is it so totally sad that my dreams consist of my “old life”? Where I was one of those annoying loving moms that took their kids to museums, the theatre, movies, aquatic center, bird sanctuaries, the zoo, to play dates, etc. These days, my kids wake when they want, just because I don’t have the energy to go in and wake them. What for anyway? Am I going to wake them up so they can do nothing all day??? It’s such a struggle every morning to get my own lazy ass out of bed and for what, because the dishes need to be done, or laundry has to be thrown in? I used to be one of those moms that got up early, had my coffee and actually cooked a well balanced meal for breakfast before we set off on some new adventure. Now, I feel like a heap of useless skin. No direction, no motivation, no care, nothing, just nothing.

Obviously, I’m one of those people that can’t see the forest for the trees. All I see is one big ass tree that I can’t seem to get around. Now I’m thinking of that silly child’s song I used to sing to my children about the bear in the forest…can’t go under it, can’t go around it, guess I’ll have to go over it, or however it goes. Well, it seems as though I’ve been climbing and climbing and climbing and just can’t seem to get over it. I’m not one of those people that think that if it doesn’t kill you, it only makes you stronger. If that were the case, I could probably win the World’s Strongest Woman award many times over, and if Kelly Clarkson were in my living room, I think I’d have to punch her in the throat. As far as spoons go, I have none; I seem to have lost every friggin’ spoon I ever had. I wish I knew where to go to get some more.

And people around me just DON’T GET IT!!! I feel like complete caca when I see people on FB, “friends” of mine are getting together for a day at the beach, or going here or there. Do I get an invite? Hell no, why, you ask? Probably because they know that I’ll probably say no anyway, because I don’t drive that much. It sure would be kinda nice for one of these “friends” to give a call and say, “Hey, we’re going to so and so and we’d love for you to come, although if you’re not feeling up to it, I can always take your kids, I’m sure they’d love to go.” That would be an absolute Godsend. Is that terribly selfish of me??? I’d like to think that if I had a friend that was homebound with two antsy kids that would love to see the outside world every once in a while that I would so be willing to pick those kids up so that they wouldn’t feel so isolated, but maybe that’s just me.

I seriously want off this ride!

Top Ten Tuesdays

Well, I haven’t had time for much else besides my Top Ten Tuesday’s lists, and most weeks I can’t seem to get a handle on even these. I wish I could say that I haven’t had the time because I’ve been out yuckin’ it up with friends or going to the beach with the kids, but no, none of that fun stuff has been going on. It’s been weeks of doctor appointments and tests and more doctor appointments.

I’ve got a ton of work to do at home, but all that seems to get done around here are the necessary things like, laundry and maybe if I’m lucky, a swish of the toilets. I really need to enlist my teenagers to do some work around here, I’ll even pay them.

So, this is my Top Ten Tuesday list for today concerning things that need to get done around here. Some jobs only I can do, some I can ask the kids to do.

Top Ten Jobs that need to be done Around Here:

1. As I sit and type this up out on my back patio, I can see the dust and dirt building up around me. Usually, I try to super clean out here once a year in the fall, when it’s nice and cool outside. Well, this past fall, that didn’t happen, so now it’s doubly dirty. Since we live in the boonies surrounded by nurseries and dirt roads, my patio gets gross fairly easily. This might be a job to enlist the kids to do. It takes me hours usually to do it. I’ve got to move all the furniture out, roll up the carpet, sweep/vacuum everything, then get a bucket of bleach water and my trusty plastic broom and scrub the floor. This time, the screens need to be cleaned too. UGH, what a job!

2. I need to clean out my schoolroom. I home school my two children that are now teenagers in high school. Even though they are older now and mostly do their schoolwork in their rooms or sprawled on the living room floor, we still have our school room. If nothing else, it serves as a place to keep all our books and supplies. Bookshelves need to be cleaned off. Closet needs to be revamped. Table needs to be organized. This is a job mostly for me although, the kids can certainly help.

3. Put clean laundry away and throw two more loads in. Kids could do this one, but I actually enjoy doing laundry, I know, I’m weird.

4. Begin planning the first two chapters in Chemistry. A few homeschooling friends are getting together to co-op Chemistry this year. Each of us moms takes some chapters and holds the classes at our house during our weeks. The kids are responsible for the reading and work of course, but we parents are responsible for planning the experiments. Hopefully, no one’s house will blow up!!

5. I also need to begin planning the Art Appreciation class I will be teaching at another home school co-op in January. I know January seems so far away, but believe me; it will be here sooner than I think and I’d like to think that I don’t enjoy procrastinating. I’d rather get it done than to have it hanging over my head. Usually, by this time in the summer, I’ve planned and organized everything. I have barely begun to plan this class. I currently have a basic outline and when I say basic, I mean basic.

6. Tie up any loose ends with my kids’ schoolwork for this year. I have to get all their work and grades together, fill out transcripts, organize everything, make sure that they’ve done what they need to do as far as graduation requirements for the year (a little late for that really), pack it all together and file it away just in case the county comes and wants to make sure we really are homeschooling and my kids aren’t sitting around all day playing games.

7. Get my kids’ evaluations done for the county and sent out.

8. I need to do some sort of exercise whether it’s yoga or just some Wii Bowling.

9. Get my kids to clean their rooms, which oughta be fun.

10.  I need to clean the rest of my house. I could enlist the kids to help, but I might just need to hire someone to do the work.

The above are just a few of the items on my “to-do” list. These days, sadly, my mantra has been: Why do today what you can put off ‘till tomorrow?

I really am just lucky that everyone in the house has clean underwear at this point.

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

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.