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

Top Ten Tuesdays

As most of you know, I homeschool my two teenagers. I’ve always homeschooled them, thus they’ve never been to school a day in their lives. To counteract others’ thoughts on the whole “socialization issue”, my children have always been involved in myriad activities outside the four walls of our home. To name a few: gymnastics, guitar and piano lessons, homeschool park days, field trips galore, playdates, oh I could go on and on. Now that they are older, they are involved in Enrichment classes. They’ve taken classes (that are taught by the parents) in Art, Government/Economics, Writing, SAT Prep, Math Olympiads, Model UN, Renaissance, Drama, Latin, and so many more that I am forgetting at this moment. Suffice it to say, my children are well socialized and I feel they have received more than a well rounded education.

What does all of this have anything to do with my Top Ten list for this Tuesday you ask? Well, it just so happens that I also teach at my children’s Enrichment Program and have for the past 5 years. This spring I will be teaching an Art Appreciation class to the highschoolers.

Still you might be asking…and this has what to do with Top Ten Tuesdays?

I’ve been inundating myself with all things art. I love art and all things connected with art. I’ve even recently found my own artistic side through all of this (although I've always considered myself quite crafty).

I wanted to share with you my Top Ten Artists I've Been Studying (mostly Modern Art). So here goes in no particular order:

1. Georgia O’keefe

Rams Head, White Hollyhock and Little Hills, 1935

 

2. Henri Matisse

The Open Window, Collioure, 1905

3. Vincent Van Gogh

Starry Night, 1889

4. Jackson Pollock

Blue Poles #11, 1952

5. Georges Seurat

A Sunday Afternoon on the Île de la Grande Jatte,
1884

6. Claude Monet

Waterlilies and Japanese Bridge, 1899

7. Piet Mondrian

Tableau I, 1921 

8. Edgar Degas

Four Dancers, 1899

9. Pierre Renoir

A Girl with a Watering Can, 1876

 

10. Jasper Johns

 Numbers in Color, 1958-59

 

P.S. I've been so engrossed in planning the Art Appreciation class for my Homeschool Enrichment Program, I nearly forgot to post my Top Ten!!

 

Top Ten Tuesdays

Top Ten Favorite Websites, Blogs and Facebook Pages Related To Dysautonomia

I’ve been dealing with chronic illness for almost 4 years now. Not quite as long as many, but believe me, long enough. I’ve spent countless hours online reading, researching and trying to find out as much as I can about this disorder. Some the following sites can be found on the “Helpful Sites and Whatnot” tab at the top of this blog, but I figured it was time to list them in my Top Ten Tuesdays.

So…here goes my top ten favorite websites, blogs and facebook pages in no particular order:

1. https://www.facebook.com/groups/potsyparadise/

Ok, I realize I said “in no particular order” however I had to list this Facebook group first. This has become my “go to” FB page of late. It is a closed group for those with chronic illness, although chronic illness is rarely discussed. We talk about and share our lives outside of our illness, and it is so refreshing. I’ve so enjoyed getting to know the wonderful people on this site as well as the admin. (Linda Burgess Parsons). This site is a breath of fresh air. Check it out!!

2. https://www.facebook.com/pages/Living-With-Bob-Dysautonomia/137659809587078

This is another FB page, although the author (Michelle) has a blog as well: http://bobisdysautonomia.blogspot.com/ The author is a former Neuropsychologist unfortunately turned Dysautonomia patient. She is an extraordinary writer and has a knack for putting my thoughts into eloquent words. Of course they are her thoughts, however they resonate with me quite often.

3.  http://dinet.org/

This is an informational site for those with Dysautonomia. There is a plethora of information on this site; anything from definitions to doctors around the world who specialize in Dysautonomia.

4.  http://forums.dinet.org/

This is a page on Dinet.org. Here on the forums you can find caring, compassionate and encouraging people from all over the world sharing, asking, comforting, and discussing all things dealing with chronic illness, specifically Dysautonomia. This forum has been a god-send to me many times.

5.  http://justmildlymedicated.com/

This is a blog that I enjoy reading as well. The author (Carrie) is a military mom of four (thank you so much for your service Carrie!) She has a wonderful way of incorporating humor into the world of chronic illness that would otherwise not be humorous at all.

6. http://letsfeelbetter.com/

This is a blog from a gal that lives near my area. I’ve just recently come upon it and have enjoyed reading it. She is a free lance writer and has been published in magazines. She is getting Dysautonomia out there for all to read and increasing awareness one story at a time.

7. http://www.dysautonomiasos.com/

This is an informational site. It too has a plethora of information regarding Dysautonomia. They are making wonderful strides in awareness.

8. http://lethargicsmiles.wordpress.com/

This is yet another blog that I follow. The author writes about her life with chronic illness, specifically POTS (Postural Orthostatic Tachycardia Syndrome). There is lots of info on the site and she allows us into her life with chronic illness.

9. https://www.facebook.com/groups/198025970324867/

This is a FB group that I just joined. It is called “Thriving with Dysautonomia” I can’t wait to dive in and get to know everyone.

10. https://www.facebook.com/groups/664857806880898/

This is yet another FB group called “Coping: Chronic Illness Support” It is another group that Linda Burgess Parsons admins. Linda does an awesome job and is always there with a smile and encouraging words.

As you can see, I spend heaps of time on Facebook!! I’m slightly embarrassed J Everyone needs support and encouragement and that’s what I get from the FB pages. Most of the FB groups I’ve listed (if not all) are closed groups which means that only the people that have been accepted into the group can see your posts. I prefer it this way as I don’t like sharing my illness with my family and friends, with the exception of my online friends. I know it sounds strange, but most of my family and friends don’t really know that I’m sick and/or if they do, they don’t really understand. That’s precisely why I enjoy these closed groups. I get to share and be encouraged as well as trying to do my part in supporting and encouraging others. I can tell you that it sure is nice to know that I’m not alone in dealing with this illness.

If you’re dealing with Dysautonomia please be sure to check out some of the above sites. YOU ARE NOT ALONE!!

If anyone reading this has any sites, blogs, FB groups and the like to share that aren’t listed above, please feel free to leave a comment below.

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

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.

Stupid Question

So I’ve been off the grid, so to speak for over a month now. I was hoping to come back on and be all “The world is my oyster, I’ve kicked this disorder’s a$$!” Sadly, not the case. I was trying to will this syndrome away, to no avail. I can still be thankful that I am about 20-30% better, but no way near back to my old self. I have chosen to live with it and do the best I can with what I’ve got.

I was thinking the other day that I need to call my doctor to make an appointment to refill my prescriptions. That’s all they really do for me, fill prescriptions. I guess it’s better than doing absolutely nothing. So, I was thinking about what I’d love to say (but probably won’t because I’m not the confrontational type) when the well-meaning doctor asks, quite possibly in my opinion, the stupidest question ever asked by a doctor to a patient with chronic illness…

“So how are you feeling?”…

My fantasy answer would go something like this:

“So, how am I feeling…how am I feeling? Let’s start with last night as I tossed and turned because my lower back, joints and tendons are in so much pain that it wakes me about every other hour, thus allowing me to get about 2 hours of continuous sleep at a time. This of course, is provided I can even get to sleep before I smell the coffee brewing for the next day with my tinnitus going full tilt, yet another headache, and a head full of thoughts about all the stuff I have to get done the next day but might not be able to.

I reluctantly wake the next morning sleep deprived, but I make the decision that this is a new day with new mercies.

Hmmm…how am I feeling? Well, I’m just hoping I can get through the day. As I roll out of bed feeling as though I’m eighty years old (even though I’m half that), complete with aches and pains as if somehow a Mac truck has sneaked into my room at night and run me over about a dozen times, I hobble into the bathroom to complete my morning routine which consists of peeing an inordinate amount of vermilion urine, possible diarrhea, brushing my teeth that hurt because I clench them so hard at night (I’ve cracked two molars now) hoping I don’t gag and throw up. I might need to revisit the toilet numerous times in the next couple of hours with the big D depending on the morning. Ahhh, what joy!

Actually, my mornings and afternoons go well most days provided I don’t have to double up on my anxiety meds because I have to drive somewhere or someone is coming over. Hopefully, I don’t get an adrenaline rush (or what I believe to be an adrenaline rush, I don’t know for sure as no doctor has ever looked into it) that leaves me in a pile of sweat on my cool bathroom tile floor unable to move or lift myself up. These usually happen at night though for no apparent rhyme or reason. I just lie there and have to wait for them to pass, and then I need to sleep for about 14 hours. This is just about the only time I get sleep, although I’d rather not have to go through the feeling of death in order to get some sleep.

I hope that I can do up the morning dishes without going into tachycardia, sweating profusely, tingling all over and ready to pass out, hurl or both. I hope that I can do a few loads of laundry so that my family at least has clean underwear. If I accomplish at least this without chest pain, I consider it a win. If I can get through one day without thinking I’m having a heart attack and wondering if I should call Big Handsome home to take me to the ER, I consider it a win. Hell, if I get up in the morning, I consider it a win.

I then retire to my bedroom where I spend most of my time. Maybe I’ll try to draw in the attempt to relax and lower my blood pressure that is slowly creeping upward. I would love to lie there in my comfy bed and draw, but I can’t because as of late, my eyes don’t work well with the need of reading glasses now, the floaters swimming haphazardly through my field of vision and my hands are to too shaky to draw a straight line.  A headache begins, but I’m used to those since I have one just about every single day of my life. I’m hoping it doesn’t turn into “the” headache that leaves me in a fetal position for hours and sometimes days.

I try to work with my kids on their schoolwork, all from my bed complete with laptop and books strewn all over my coverlet along with my two children and two dogs. Thank heavens for a king-sized bed. I attempt to instruct my children in Geometry, Pre-Calculus and Chemistry all with a brain-fog that leaves me not knowing which way is up.

Lunchtime is left up to the kids. At this point I don’t even know what they are eating. For all I know, lunch might consist of a pile of cheese balls. At least I know they will get a decent dinner as Big Handsome has graciously taken over that task because I can’t stand long enough at the stove to cook a meal anymore, and even if I did the tachycardia and fatigue would leave me unable to even eat the meal prepared.

I’d love to do about 15 minutes of Wii Fit Yoga, but choose not to as I know I will pay for it in spades for the next few days while my joints and tendons seem to be on fire. Might I have fibromyalgia?? Who knows, because yet again, no doctor has ever looked into it or entertained the idea that something else might be going on. 

At dinner, I eat approximately ¼ of what I used to eat and I only eat that because I have to. My stomach tells me I’m hungry but my mind says that I want to hurl just at the smell of food. After I choke down my meal, it’s onto the couch for the remainder of the evening. The headache continues as does the tinnitus, at which point I have to turn on the subtitles while attempting to watch a show because I can’t hear what is going on. If the character is turned away from the screen while talking, I can’t read their lips and am forever annoying my beloved family with “Huh???” “What did he say?” thus the need for closed captioning as well as the volume turned up to about 50, which does wonders for the headache. Wish I knew what was going on with all the hearing/tinnitus issues, but low and behold, no doctor has even talked with me about it.

I then retire to back to my bedroom hoping, praying that sleep will come, but all I have to look forward to is the same type of day tomorrow, that’s only if I can get to sleep at all.

So… dear doctor…in answer to the stupidest question ever asked, “How are you feeling?” How do you think I’m feeling? My answer is…”Like $hit, practically every day of my life.” By the way, this is my typical day. I haven't even mentioned the bradycardia, swings in blood pressure, nausea, and so much more. I’d like to ask you a question now, “What the hell are you going to do about it?”

And so, this is my triumphant return to the world of chronic illness. Thankful that I am still here to battle yet another day.

I hope that I can share something more positive in the near future.

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.

Half Back

I know I’ve been on a break so to speak; a break from blogging, mind you, not from life; boy, that would be nice for a change.

When I contemplated writing posts again I fully had the intention of starting off on a positive note. I so wanted to tell the world that I had a new lease on life, that I had willed my illness away. Sadly, to no avail. I  My body failed in my objective to leave this illness behind and carry on with life; a new life, my life. Unfortunately, this illness has a mind of its own. It's quite akin to attempting to reason with a willful toddler.

Not starting out on the right foot it seems. Tomorrow, I shall try the other foot I suppose.

I shall continue to try to do my best to live with what I’ve got.

I might feel helpless at times, but I will never be hopeless...