Monthly Archives: May 2014

Summer break week one(June 1 to 7th) -preview

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So this is technically the first week of summer break. June first through June seventh. I will post on June eighth what actually happened. If you follow me already , you know there will be lots of pictures. This may seem like a trivial thing but when you have chronic illnesses that deter you from functioning , a plan goes a long way. This is just what is PLANNED. We all know how arthritis and Fibro like to mess with plans. I will report back on how they interfered as well. I hope this can and does inspire other mothers , fathers, care takers who have chronic illness to enjoy the summer without feeling guilty and without too many flares. There will be plenty of time for the kid to have free time.  She does however thrive better if she has some structure. She has been doing well on her reading and I plan on challenging her to read an hour at least three times a week if not more. She is currently reading thirty minutes so this will be an increase.  We are also planning on reading at different places. I am hoping this will help her filter a little better and increase her focus.

This first week starts off slow. Monday is a half day of school. Technically they have school but they are watching movies and playing all day. There are also not a lot of kids planning on going. Since I have to clean in the morning she is going for the morning.

Monday: Drop kid off at school at eight thirty. Go to cleaning job. Go to Farmers market.Pick up kid after lunch. Come home. read outside with the dogs for an hour.

Tuesday : Sleep in. Read for an hour. Clean the house day. including the kid’s room

Wednesday: Take kid on four mile walk round trip. Take her scooter so she doesn’t complain too much. let her cool off in the lake. pack a snack. come home. Read for an hour.

Thursday: Nine am Math tutoring lesson.  Pack up and go to the beach. Set alarm for every seventy minutes to reapply sunscreen.Read for an hour at the beach.  Picnic lunch at the beach. Come home. Hopefully not too sunburned.

Friday we have a movie at the library. They are watching Planes. Then we will probably have a picnic lunch. We will then drive about twenty minutes south and arrive at another library for a two pm Archaeology class. This is the description of the class:

Description:
 Look under a microscope with USF Archaeologist Rebecca and discover artifacts from the past you never knew existed. See how these scientists solve historical mysteries. Ages 6-13.
Saturday: Dragonfly nature walk….a guided walk in a park we visit often.
I can’t wait to see if it lives up to the description! I am also hoping to be able to sit in. I adore this kind of science!
Well that is the first week. We will see what all gets done!
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Tuesday Ten- summer bucket list

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The Golden Spoons

This year’s Summer bucket list.

1. Beach: Let me expand on that since we live in Florida. My goal is to get to the beach at least once a week. It is a lot more labor intensive then people think. Especially when going with kids. Sunscreen, Water, Snacks. Blanket. Book, Towels, Buckets and Shovels, Ziplock bags(for shells and other “treasures”)  Then the clean up and the miles of sand that ends up everywhere. But I am determined. Plus its free.

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2. Hiking: I want to also hit a nature trail at least once a week. I have some planned that are a bit of a drive but also I just want to keep up with my walking and also keep my daughter interested in fitness.

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3. visit from friends: I have a friend who is planning a visit. It only happens once a year. I am looking forward to all of it.  Seeing her, seeing my town through her eyes.

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(doesn’t she take the best pictures?)

4. Science: We have buckets of science planned. From library classes to dissections to aquariums and museums. The best part is the library classes are free and they run from squids, to germs, to invertebrate animals, even an archaeology class.

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5. Art class: This is a fun one. My daughter gets to do a pottery class. I get four hours twice a week kid free. I kinda want to do some of the pottery stuff with her but its her deal. Maybe we will get modeling clay so we can practice huh.

6. Reading: Oh the reading. We have been stacking up books for the last month. We may have gotten a bit carried away but we are okay with that. READ ALL THE BOOKS!

7. Disney camping trip: We are camping at Fort Wilderness. We are going to Epcot. We have planned it so that we get there one day, we go to Epcot another, we have another to relax and then head home.

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8 Learn to knit: This is a class I am hoping to sneak in on. We have been practicing sowing and she wants to do more and more things.  So maybe we can learn this one together.

9. Sleep in . Most of the classes and things scheduled don’t start until at least nine. So I don’t have to get out of bed before eight am! I am so so so looking forward to doing that and can’t wait to see the end tally of how many days I actually accomplished it!

10. Surprises: It may be an odd thing to have on a bucket list. I want surprises. It would not be as fun if everything we planned went exactly as planned. It is often the things that happen by surprise that make things better.

I will have to do a post at the end of the summer to see how many of these actually happen!

Nature’s Gift

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Today I turned a year older. I didn’t really want presents. I have no room for anything and really don’t need anything. Instead I wanted to go on a hike at a new place with friends. I had seen pictures of a place that was a bit of a drive but still near by that intrigued me. Six Mile Cypress Slough Preserve. I just can’t even begin to tell you how perfect it was.

There are quotes on plaques at certain spots along this boardwalked path. Between the sighs and sounds of the preserve, and the quotes. Nature was talking to me. Letting me know that I am on the right path and to keep it up. It was nourishing in a way I didn’t even realize I needed.

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“You learn that if you sit down in the woods and wait something happens” Henry David Thoreau.

The soft sunlight, the smell of cypress and the chatter of birds in the trees. It was all just so perfect.

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“Falling in love with the Earth is one of lives great adventures. ” Steve Van Matre

Its true. It was like falling in love with the Earth all over again. Every step. Every new discovery. Every new enjoyment from the kids.It doesn’t matter that we have lizards and squirrels. These were here now! We saw them! It was right there! Watching their delight was truly a gift. Using our imaginations and just taking our time walking. We even saw a tree looking at us!

 

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It was truly an enjoyable walk. It was exactly what I wanted. It was gorgeous weather. The humidity and barometric pressure were steady, important tidbits when dealing with arthritis.  We lost track of time watching the turtle weave around the pond. We delighted in watching them eat the algae.  It was a secure enough trail that we felt confident enough to let the kids wander ahead of us.  Letting them explore and make their own discoveries.

 

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Its camouflaged  very well but I promise you there is an alligator in this picture. We watched him rather lazily swimming around for a bit.

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I can’t even imagine what it was like here even just fifty years ago. These trees are relatively small for cypress. There were some bigger ones. I just love the cypress knees sticking up.

 

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I think one of my favorite things was how many Yellow crown night heron’s we saw. It was like once we saw one we kept seeing them. We even got to watch one eating a fish.

 

It was the perfect escape and the perfect way to turn a year older.

 

We followed this with a visit to Tropical Smoothie Cafe. The kids were super excited for smoothies.  It was all very delicious and the food came fast enough that the kids didn’t get too delirious and were so well behaved. Enough so that they even got cookies.

 

Don’t be so hard

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It occurred to me today that I have been unreasonably hard on myself. I have been wondering why things I used to be able to do are such a struggle lately. It was only in discussion over some of this with a friend that I realized the difference was medication. I am not on prednisone, soma and Lortab. That I have taken steps that means I can do less but will live longer, and healthier.

When I went off the medications it was not by choice. I was sure I was going to be back right on them as soon as I found a doctor that would listen. Between the weight gain and how sedentary my life had become, I knew I needed to make changes. I just didn’t want to think about it too closely.I dealt with it slowly and piece by piece.

Sometimes just realizing that you are being unreasonably hard on yourself, that allows you to relax a little. I am going to try and focus more on what I have done each day than what I have not done. I am going to try and remember that being off those medications is a good thing and that it just makes self care even more important.

I have realized that I have depended on certain activities to relieve stress. The problem is they are not relieving stress. It took me a while to notice this. It is time to switch up some of my self care things.  Summer is coming. Well really in Florida Summer never leaves but the kid is out of school in a week.  There is going to be more variety. More embracing what and who we are. There is just going to be more.

I know I have said this in the past. I have done it in the past. Each time I am a step closer to where I want to be. I just have to remember that and not get frustrated that it feels like I am back where I started. I am not. I know that I am not when I really stop and look back.  Its a process. Sometimes its the process that is frustrating. Sometimes just acknowledging that makes it a difference. Gives us a fresh perspective and renewed motivation.

Tomorrow I turn a year older. Here is to understanding the process and embracing it all, the good  and the bad!

Forced to Unplug

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It dropped into the waves. My phone. I had it tucked into my bra,the strap holding it still. A friend and I had been walking on the beach. I bent over to stretch my back and rinse my hands off. Then I kicked something. I looked down. There was my phone.

Really…all I could think of was cuss words. Lots and lots of cuss words.

My life was on that!

Not just texting. Not just Facebook, Instagram and most importantly PET SAGA!!! My camera! My calandar!! GOOGLE!! RUNKEEPER!!!

No worries right. This is why I back up my phone to the cloud right… yeeeaaahhhhh.

I obviously can not walk now unless I am with someone who has a pedometer!!! My OCD said it was so and really it was not something I wanted to put energy into fighting.

I had to carry the real camera around if I wanted to take pictures and if you know me at all. You know I take pictures of everything. Not just one. TONS. I literally have taken over three hundred pictures in two hours before! For reals!!

How I did not crumple into a fetal position right there in the waves, I do not know.

Now that I have my phone back in my hand…….

I can say now I have less inclination to check every alert. Even though my ocd brain still say OMG CHECK IT NOW. It will be okay.I more and more leave my phone on silent and forget to even check for any notifications of any kind.

I now realize the importance of having multiple calendars……I got sick of saying oh I am so sorry my calendar was wiped when I lost my phone by like the second time I missed something.

I am more aware that my Attention Deficit tendrils had gotten really really bad.  There was almost always something I could distract myself with when my phone was in my hand.

It was still a disaster. It was still the most inconvenient time ever for it to happen. It did however make me look at everything much closer. How distracted was I? Was I missing things because I was distracted?

It was a learning experience.  It would not have worked if I had just turned off the phone. I do not think I could have resisted. I don’t always have a strong self discipline.

 

Most important lesson though is still to have more than one calender going.

The new normal

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When I first got diagnosed there was a lot of talk about this is your new normal. People told me you get to the point you only notice the flares becuase everything else is just always there. I never really believed them, how does this ever become normal? I was certainly never going to accept this as normal. Then one day I went to refer to myself as a chronic illness patient and I was like am I really? The new normal, I think this is what they were talking about.

I don’t feel chronically sick, so is that really the right term for it. The truth is, yes it is. If you put someone else in my body and asked them how they felt , they would more than likely say sick. I feel sick. That is the tricky thing about invisible illnesses. Everything on the outside appears so normal.

When exactly in the last six years ,almost seven, did I start to think how I felt was normal? When exactly did waking up with intense all over body aches that you don’t want to move a single body part become normal? When exactly did having no more energy to get through the day by three and plowing on through on pure stubbornness become normal? Would someone please tell me. Someone tell me , here on November 21, 2012 at exactly 10: 02 am this became your new normal. This is what a good day feels like now.

Now when a doctor or medical professional asks me for my pain level by number, I have to really think about it. Not because I am not in pain but because I have to judge what any other human being would dictate this pain to be. At the same time being realistic about it as well, if I truly want any kind of helpful treatment. If I don’t I am either looked at as a pill seeker or a hypochondriac, or both. Now its a normal day if my pain hovers around a five or six. That is a good day. That is what I deal with everyday. The waking up with body aches and the joints that don’t want to move. The morning stiffness and ache tappers off a bit with medications and movement. I might actually get an hour or two to be productive, run errands and what not. Then the three pm drain. Its almost an exact science, I get overwhelmingly tired at three pm. Do you know where I am at three pm monday through friday? In carline waiting to pick up my daughter. Then its don’t sit down or you are completely done time. There is dinner to be made and homework done and showers taken during this time. If I sit down the chances of me getting back up are slim. Then the going to bed feeling ten times worse than how I woke up.

I can’t tell you  how many times I have nearly drifted off sitting in the car at carline. I am terrified I might actually do it one day and miss pick up time. I actually park and walk in to get her because it is less likely for me to fall asleep that way. Unless it is a bad day then I do just drive through. When I can be that mother that I want to be, picking my daughter up from her class, I do. Even if it means it may increase my pain levels. There are plenty of other days where no matter what, I can not do it. I hope one day when she looks back, she will see the days I did were more numerous than the days I didn’t.  I don’t mean just with carline either.

So the new normal is here. I am not sure when it came, sometime between a flare I am sure. We are still getting to know each other, this new normal and I.  There are still days that I struggle to be the parent that I wish to be, the chronic pain/illness patient, and wife.  Those being the three hats I wear the most. Will I ever find a balance in this new normal. I am thinking not, but I am hopeful still it will come.

Two ways to see it

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I am stuck in bed today. I knew it was going to happen as soon as I heard the kid say ” Mommy”. I felt like my body had been filled with cement. It hurt just to roll over. I am glad she is able to get dressed and feed herself now because I would not have been able to do it this morning. I did not get dressed. I drove her to school in my pj’s and no shoes and no idea what my hair even looked like. I came back home. I took my morning medications had a bowl of granola and laid back down. I have tried to get up and function several times but I just end up severely fatigued and out of breath. I am trying to listen to my body. It does not want to have anything to do with functioning today.My lower back feels like someone lit it on fire and the sciatic nerves are flailing about saying we are on fire we are on fire. Headache, body aches, fatigue it is all here today. If I want to be any kind of parent when school gets out I need to rest. However being without my phone for like five days I have missed walking. I have missed taking pictures of things I see, things we are experiencing. I could have walked without my phone. I do have paths that I know how far it is without my pedometer. Sometimes its easier to not fight my OCD and my ocd was determined we could not walk without it. I have used our regular camera while my phone was out of commission. It just wasn’t the same. I have another whole blog post about this being without my phone coming.

I can look at today as a complete failure. I can’t function. I can’t be productive. I can’t.

or I can look at it this way.

I can take care of my body. My body needs rest. I can do that. I can rest and have enough energy to parent once the kid gets out of school. I can function for what is important. I am being productive. I am giving my body the rest it needs. The rest it is screaming for. 

I am sure I could have medicated enough to push through it. I have done it before. It doesn’t get me anywhere really though. I still crash and often crash harder for having pushed when I needed to rest. I am trying to be smarter about that.

I am really not good at resting. I get restless. I want to do things. Anything!  So I am reading. I am writing. I am playing games on my phone. I am passing the time away while resting in bed. I have tried to sleep. It still eludes me. Resting to me is the most frustrating part of chronic illness. My brain is still working. Its my body that says no. My brain says… DO ALL THE THINGS….my body says…hmm lets not. 

So here is to resting. Here is to not seeing it as unproductive. Here is to looking for the good in everything.

Ten places

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We live in the Tourist Capital of the world, in Florida. We have beaches, we have aquariums, We have so many cool places to visit. All but one of my five places is in Florida. The other one is just as gorgeous, California. So without further adieu…here they are.

1. Siesta Key , Florida. Pristine white beaches, it is not a lie. Pavilions for cook-outs, playgrounds for kids, not to mention the BEACH. The waves, the shells, the water it all adds up to a beautiful time. There is lots of things out there for kids to discover as well. Coquina’s and sharks teeth and shells, seagulls to chase!

 

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2. Lowery Park Zoo Tampa Florida.

This zoo can easily take you a full day to experience every part of it. There are so many animals to see. There is even feeding stations! You can feed Giraffes! You can feed Rhinos! You can feed Birds who come right to your hand!  Giraffe’s heads are bigger than you think, not to mention the long purple tongue!  There is of course a petting zoo as well, but watch out for the Llama’s they are not easily impressed. There are plenty of variety of types of food for lunch and snack time. There is even a Starbucks. I mean what more could you ask for from a zoo?

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3. I said there were aquariums and there are. Tons of them. The one we love the most is Mote Marine Aquarium in Sarasota Florida. The touch tank is always a big appeal. There is a shark movie, interactive dolphin games, shark tooth cove and stingrays you can touch.  There are two buildings to explore. The more traditional aquarium part and sharks.  Across the street is the turtles, manatees and dolphins. There is so much information available and learning to be had you will definitely walk away with some amazing facts. There is a cafe there so you don’t even have to go anywhere for lunch. It can take you all day if you want it to. However we have it down to a fine art and we typically go through it in two or three hours. We have been going for years though. We go at least once a year.

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4. Homosassa Springs Florida, a little blink and you miss it area. However it is rich in history and so much to explore. The best part is the water is almost always 72 degrees and crystal clear. There are springs you can go swimming, snorkeling and even diving in. There is also the biggest appeal of swimming with the manatees. Minutes away is an old Sugar Mill, an archaeology park about Indian middens. The food, oh the food. Crab shacks that have fresh blue crab farms out back. This is also a place we would try and go once a year. Often we went for a weekend but have also gone for a week at one time.

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5. Last is San Diego California. While this is just outside San Diego. We went to Julian to have apple pie and cinnamon Ice cream. There is so much to do there and so much to see. We went for the snow.  We went for the apple pie and cinnamon ice cream. We went to visit family.  Two weeks and we barely scratched the surface of San Diego and the surrounding areas. Make sure to stop at an olive oil bar and a winery or two, or three. My other favorite was the many places to get Lavender. I love lavender!

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Places I have always wanted to go.

1. Ireland. I really want to go to Ireland. All over Ireland. I am Irish and I feel it calling to me.

2. Paris, Oh Paris how could anyone not want to go check out your sights, your pastries, your wines! I want the biggest shopping spree ever!

3. The Grand Canyon. This one is slightly more realistic for us. We will get there one day. I want to hike some trails, and take in the view.

4. Canada. I have friends in Canada that I would love to visit. The scenery and stuff would just be gravy.

5. The last place I would like to go to is the Amazon. What can I say. I am a nature person through and through. I want to walk in rainforests, paddle down the amazon river.

The Liebers

So maybe I am a clarinet……

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This is something I wrote a bit ago and have been picking on and really I just need to publish it and leave it alone so here it is.

So today I was at a memorial, it was a friends husband. It was sad but also somewhat expected, he had cancer and some other issues and we all knew it was a matter of time. Still, this is not to say it was easy.  They had handed out drinks because he wanted a proper Irish Wake. I chose half a glass of white wine since I still had to pick up the kid.  and they were listening to soft jazz. I sat there thinking I don’t listen to jazz nearly enough.  I was thinking about I need to work more on writing. Then suddenly I was thinking about how I wish I learned to play the piano and back in the older days everyone learned because there was no tv.  really envy people who play the piano. Who can just sit down anywhere at a piano and play. I know I could learn. Then I was remembering how in school I played the clarinet,I was always sorta mad about that. I had a great band teacher in middle school who set me on the path of the clarinet. It was a good fit, even if I did not admit it at the time. I liked the piano or a saxophone or a flute, anything but the clarinet. I wanted something that showed passion, I could not see passion in the clarinet. It wasn’t until years later I realized the clarinet had a deep unassuming beauty. It is a beautiful and capable of some truly complex sounds.  The more I thought about this the more I could see we were a good fit. As I continue my path of self analysis and self love. I realize more and more that I resonate with the clarinet and its unassuming quiet deep beauty.

Ten things…..I have that many right?

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Yesterday I had a day right out of Alexander and the horrible terrible no good very bad day, except mine were adult problems. I would have loved to have the problem of gum in my hair. When I saw the link to this from Comfytown Chronicles. I thought to myself. “Self, you should do that, maybe it will get you out of your funk. So here it is.

1. I am thankful that we have a house. Even if it is a trailer and I didn’t particularly like that. It keeps us dry and most of the time cool and sheltered from the storms. A house is just the walls and roof, people make it a home. 

2. I am thankful for espresso. No really. I am like super thankful. It was a moment of bliss in my day yesterday. I really wanted to just throw it back like a shot. I forced myself to take it slow and savor it. I am glad I did.

3. I am thankful for a husband who gets my chronic illness and chronic pain and works so very hard to provide for us.

4. I am thankful for a kid who for the most part is really well behaved and listens. Even if I am currently the worst and meanest mom for making her clean her room before a friend comes to spend the night.

5. I am thankful for my cats. They know my emotions better than me sometimes. They know when I need to snuggle and are not gentle about telling me. They know I need it before I even realize I need it. Now if they would just be toilet trained instead of cat litter.

6. I am thankful for my car…..and the little engine that could it has. 

7. I am thankful that between my brother in law and my husband they were able to find out what was wrong with the little engine that could and give it some tender loving care.

8. I am thankful for friends who understand when I flick them off and let out a string of curse words…..there were no kids around. Then just listen to what is going on and why I was so very angry. Then buy me pastry to heal some of the emotional pain.

9. I am Thankful we live minutes away from most of our activities…..because then I can lay in bed until the last possible second.

10. I am thankful for my laptop. My phone died a sad tragic death on Thursday and this laptop is my only sanity left. Even if I can’t take pictures with it.

 

So there you have it.