Monthly Archives: July 2013

How eight years makes you feel super old

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Looking back…

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It was early early morning…..Like five am early…is that even morning? I don’t think so.

..I had gotten up extra early because I wanted to eat specific energy giving foods…Today we would welcome our daughter into this world. I was scheduled for an induction to start at seven am. It never occurred to me that she would not be born that day. It never occurred to me that labor might actually take longer than there are hours in the day. After all, this daughter of mine had been trying to come out since twenty three weeks.. But we were at the finish line. thirty eight weeks and four days. She could come out anytime now.

They had told me at thirty six weeks if labor started they would not be stopping it. Of course that was when my daughter decided to close up shop. Tighten everything back up. NOW she was content to stay where she was.

Twelve hours and half hours later, one shot of nubain, a very determined baby to stay inside later…..we had a daughter.

I look back at pictures and think…Gosh I was soooo young then. I had it all planned out then. Really I should have known this was an illusion when delivery did not happen anywhere close to my birth plan.

Don’t get me wrong I wouldn’t trade it for the world and some of my favorite moments are the two of us snuggled up together. That was what I clung to when I was faced with a squirming pile of baby who had pooped from the back of her neck to the tips of her toes. This is what I clung to when she had to have tubes. This is what I clung to when she announced she had pooped outside like the dogs…Image

This is also where my scrapbooking actually paid off. What a great way to keep all these memories…Much better than a baby book in my opinion. I never bonded with the baby book thing….I tried four different ones. But I always had my camera near by or my phone camera. I could snap a picture and make it all pretty and you know they do say a photo speaks a thousand words.

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Anyway as I look at her now….I see myself in her in many ways. She is very creative, she likes things neat and orderly but doesn’t always have the brain to make it so, She has anxieties (alot of what she tells me she worries about I remember worrying about at her age), she doesn’t let things hold her down for long.She is generally happy and outgoing.  I also see my husband in her, her ability to observe things and to be very logical, Her ability to remember things for a really really really long time.(sometimes I don’t really like this feature) I see my sister in her, in her nose and in her desire to wear dresses and make up and jewelry. I see my dad in her, in her ability to talk to just about anyone. I think about how all this came together to make this child who she is.

She was a long awaited child. After the loss of  pregnancy. After trying for years. After month after month of getting my cycle. After well intention questions that hurt to answer.After thinking that maybe we weren’t meant to be parents. Maybe we should look into fostering a child. The day we were told our schedules were too busy for a foster child was the day I found out I was pregnant with her.

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She has made me grow in ways I never even imagined. She has made me look at life differently. She made me slow down and appreciate more. Enjoy more.. Be more.The love between a parent and a child can not be fathomed until you experience it. Its one thing to say you would die for your child its another to believe it with every fiber of your being and know that you were only dying for that child after you had fought with everything you had.

That’s one of the things that makes parenting with chronic pain so hard. If it was pain  I was saving her from I would carry it without a hesitation.

As long as I can remember the one thing I was sure I wanted without a doubt was to be a mother. I couldn’t even focus on what kind of career I was going to have. I was going to be a mother , beyond that I didn’t care.

Eight years…..Eight years has never felt so short as they do in this aspect.  I am having so many emotions about this birthday. I am not sure what it is. I have noticed her baby fat is melting off. She is transforming before my eyes. All I can think of is I am not ready. I am not ready to cross over to this next stage of parenting. She is no longer a baby. She is no longer a toddler. I am just not ready.

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It seems like just yesterday it was the worst thing EVER if Winnie got left at daycare. He is still around here but is mostly ignored. Poor Pooh bear. When she is sick though or just out of sorts I catch her snuggling him…

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Now swimming is no big deal to her. No longer fearful of the water. She is willingly going underwater. Even JUMPING into the pool.  Really its for the best because now I could never hold her like that and swim. Progression of arthritis makes that impossible.

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This seems like just yesterday. How was that five years ago?

It seems like every day she is changing….again.  I had definitely slowed down on taking pictures. In being so immersed in the moment I forgot how quickly it was going by. I am back up to taking pictures of everything. I don’t want to miss a second. The changes are almost noticeable day to day.

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I look at these pictures and think about the memories and how she is now and I think…Yeah…this is good.

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There are nights that when she is asleep in our bed, I see the baby that she was. No matter how big she gets, no matter how sassy she gets, she will always be my baby.

That to me is never so evident to me as when she is sleeping. I can stare at her as much as I want and she won’t say : “what?”  or “stop staring at me mom!”

Then there are even more special nights when she wants to snuggle to sleep. They are not very often anymore. So when they happen. Its golden.

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I think its so much harder because its never been more evident that she will be an only child as it has been in the past year. Constant chronic pain has not been nice to me. I know I am not up to parenting a second child the way I would want.  I always pictured when I was a mother I would have more than one child. Two….possibly three. I know if it happened we would be fine. We would adjust. We would make it work. Something that chronic pain has taught me is every day things can be exhausting. We forget how exhausting those first two years are.  We forget how much work it is. We block it out because of love.

All I can think is I am not ready.  I am not ready in many ways. Thats the biggest difference from August 1st 2005 to August 1st 2013. I know I am not ready. I know I don’t have it all planned out. Just when I had adjusted to having a toddler/young child she is now growing into a new stage.  I am not ready to move to the next stage.

If you have read this all the way through…thank you for putting up with a mommy’s musings on the last eight years.

Sleep convo

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Why aren’t u going to sleep?
I’m waiting for you to go to sleep
Well I am trying to go to sleep so just go to sleep
This is what mommies do…we can’t sleep til our babies are asleep
Well I am trying to tell you my sleep doesn’t work like that.
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Mommmmmmmyyyyy I will close my eyes and then you can go to sleep too.
Okay just do that I will wait a bit after that before going to sleep.
Moooo.mmmmmm..yyyyyyy
It doesn’t work like that and I need to talk to myself about my day and what I want to do tomorrow
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Silence for like thirty seconds

So what
DO NOT

Of all the times for mommy intution to fail..

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There have been some blog post lately about kids going to school for the first time. ………

 

After the way our first four months of kindergarten went, I am sooooooooooooooo glad its behind us. It was one of those things that I feel Mommy’s intution should have popped up and said…”  Excuse me? This is not normal!” it didn’t.

The guilt. I won’t lie. It was bad. I tried to tell myself there is no way I would have been able to tell the difference.  It wasn’t because I was tied up with my medical issues.

Maggie started kindergarten in August 2010 there were many days that she was either sent home or the nurse called because there were frequent visits. Headaches, Tummy aches, That general I don’t feel good complaint.  The excitement the anticipation the new, the stimulation overload of new……totally normal first time in school nerves…right? September….still there… a little less frequent with the addition of allergy season for her starting so she was taking zyrtec in the morning and sometimes benedryl at night.

Allergies were no new thing to us. We had finally gotten them controlled they were rare;y triggering asthmatic reations. We had not had to use an inhaler for two years by this point.

October……she was still going about once a week for a headache and tummy aches….a short rest and she normally went back to class.  We kept trying to assure her she was doing GREAT at school and just giving snuggles and lovings as often as possible.

November….finally yes! something must be working as we are suddenly going longer and longer between clinic visits..

December comes and bam…like three days in a row…The nurse said maybe its a food allergy that causes this…as when I came to pick her up I had mentioned she frequently had belly aches and headaches in the middle of the night lately too…

 

armed with the large stack of clinic slips….we went to the doctors office. I love this pediatrician and I hope we can get back to him one day, when we have good insurance again. Heck just have insurance again. ANYWAY….

He really did take us seriously….So…HUGE HUGE HUGE…did I mention HUGE family history of GI issues. This is where we had boiled down to. He ordered an H.pylori Test and said lets also start with a lactose free diet. He warned me that it takes thirty days for lactose to work its way out of the system and he would see us back in two weeks to go over test results and to review how lactose free was going….

I can’t tell you how obvious it was three days into lactose free diet that we had discovered the culprit.  Not only did her tummy aches and headaches go away but her whole entire demeanor changed. She seemed clearer. more focused. My wonderfully crazy and creative child was back! . The longer she was on it. The more it became clear this was the problem all along. She got a red label for her health file and we tried to adjust.

Part of trying to adjust was a crash course in lactose free and what that means for her. You see she inhaled milk, yogurt, cheese like it was a disappearing product. She could not get enough. Little did we know that alot of people who are lactose free also crave lactose rich foods.  I spent hours and hours and hours reading about lactose intolerance. I had not know that she could develop it. I always assumed that it was something you either were born with or without. We avoided all lactose. Everything and anything that might have it in it. Even checked and changed her multivitamin(that particular one was a tip from midnight internet researching.

We let little slips occur here and there…..cake, cupcakes, ice cream….that sort…Then we switched her yogurts from soy yogurt to just kid yogurt. Oh oh that’s right I worried how she would react to these changes and the difference in taste. We discovered that all three of us could handle rice milk…..lactaid was also fine, Almond breeze and coconut milk were a no, so was hemp milk.,. We did allow soy milk and it was something I watched closely..if we got too moody we switched it out for a bit.

Now we have it down. If she is exposed to dairy we try and give a Zyrtec as soon as possible if she hasn’t already had it that day…..then we follow that up with benedryl at bedtime.

Three years we finally feel we have a good grip on this. When we can splurge , when we can’t, how to counter act the splurge.

However when we look back…I still cringe just a little. I still have to squelch that little bit of guilt that pops up.

I will…..

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Eat Ice cream neatly.

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Nap in mid temper tantrum.

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Wipe my sweaty face with my dress

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Go  out in public incognito.

And Snuggle babies whenever I can

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Well if that wasn’t the sweetest thing ever I don’t know what is. Your teeth should be hurting now from that sweetness.

The other side

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Its hard to see things from the perspective of the other side.

The other side of addiction…..

The other side of depression

The other side of pain

Its hard to hear truths sometimes.

Sometimes we are so immersed in the part we are dealing with….trying to learn the lessons and move on

We are trying so hard to keep going despite what we are dealing with day to day…hour to hour..minute to minute.

We get tired of hearing oh I remember that stage or

This is what I did during that stage of my depression

We are sure that one doctors advice is utter bullshit and then come across someone that it worked wonders on. So we start to wonder if maybe we blew them off to quickly.

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I don’t remember second guessing myself so much as I do now. Second guessing what my body tells me. Because it sounds insane or because of a doctors look when I explained it.

When I was first dealing with Chronic illness and pain I was so mad. So very very mad. However you could not tell me I was mad. I was not mad I was just trying to deal and people just needed to keep my pain in MIND. THATS ALL. Totally not mad.  I can look back now. Back over five years and see the anger. I see that I thought everyone should keep in mind my pain levels.

When my therapist mentioned that she noticed some depression tendencies creeping in amongst my anxiety and panic, I was offended. I was not depressed. I just worried about everything and anything and nothing at the same time. It was normal for me to sit or lay and stare off thinking about everything. Why should I be surprised that now I was doing it and not thinking. It was great! It was such a treat! How dare she think there was something wrong with it. Now I can look back and say oh yes. I see now.

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I sometimes get impatient with myself. I want to be on the other side of whatever the situation maybe. I don’t want to go through it I just want to be on the other side with the lessons I needed to learn somehow downloaded or something. Did I mention I am not very patient?

Fibromyalgia, OCD, ADD, Depression, Pain, they have all added something to me.  Not always good things but not always bad things either.  Sometimes its just added perspective that comes in handy down the road. I am learning to be okay with that. I am trying to be more loving to myself, more patient with myself, more understanding with myself.

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I am trying not only to look at things from my daughters perspective. With open wonder and fascination. With joy. With laughter. I am trying to teach my daughter to have an open mind and I am trying not to be the inside voice in her head. I don’t want her to have the mental stumbling blocks I have had to deal with. I don’t want her to be disappointed with what her life is, or isn’t. So far, she is eight and I think she has a great perspective and an amazing attitude about things. I want her to keep it. To stay like that. To be okay with things not turning out how she expected it, to see instead the good that can come from that. It was disappointing that the koala bears were not out but we got to see the peacock on the fence.

I am trying to appreciate the in between times. To not be anxious to be on the other side of it yet.

How hard can a family outing be?

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So let me start off by saying I wanted to write. I just didn’t really know what about.  One part of my brain is saying WRITE. the other is like…uh, I got nothing. So I decided to just write about my day and see where that took me.

This is the result.

 

I had decided that the dog we were dog sitting had been so super patient with me and my slow walks.  It was time to go to the dog park and take a hike down the path.  I am pretty sure this is where I lost my mind.

Its not like we have tons of kids.

We have one.

We were only taking Neeka, the dog we were dog sitting.

One thing I had not thought about. Rain. How do you forget about something that in summer happens at least once daily. I am really not sure.

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The coloring in the photo wasn’t altered at all. It really was like that. Rain clouds brewing. It was obvious a fire had happened here recently. Fires in Florida have many benefits. They cleanse and restore. Often, not always but often, they are started and put out by the same thunderstorm.  Walking along behind them I was like…..THIS….SO MUCH THIS…Even though the dog had picked a different path than we wanted to go. THIS! Huge breathe in of contentment.

 

Then we found water. We didn’t just find water. We found parts of the trail under so much water it looked like a pond.We were too hot and tired to turn back. We kept going. Walking carefully along the sides as best as we could. Hoping for solid earth under our feet.  Neeka loved it. Her antics at first made it not so terrible. Then when we were almost out of the water logged trail…the worst was ahead of us and on the other side. High dry and hot trail back.  This is where we found sinking sucking sticking mud. There were squeals. There were tears. Shoes you know can never ever get mud off them. EVER!  I wish I had taken pictures during this part of the trail.  I am pretty sure this ten minutes of the trail is when my back said, ” I quit.”  The kid was having some epic issues with the mud and her pink pants had mud on them too. It was inside her shoe..INSIDE! It does no good to tell her to just walk at this point. She has no ability to process logical information. Hand holding, balancing somehow we got through to the other side. I wondered why I thought this was  a good idea. It had rained heavily for days before this. I should have known.

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We got back to the pavilion. Where my husband made us laugh with his antics of trying to get Neeka to drink from the fountain. A few minutes later I dumped a water bottle of ice cold water on the kid.  It instantly brightened her mood. We were hot and sweaty and a bit bug bitten(I took the bug repellant out of the closet it just never got father than the counter).

A quick stop at Publix for Sandwiches and milk, no way was either of us making lunch. Not such a horrible outing after all. The dog was exhausted, The kid not so much. She jumped into the pool to not only cool off but hopefully wear herself out the rest of the way. Pretty please?

Even with medication I knew my body had enough. I had just enough energy not to be laying down most of the day but not much outside of that. Mentally though, Mentally I was not only content but I had all these ideas. All these plans that I needed to make.  The Kid’s birthday party is coming up. I feel like I have so much to plan and do for it. When I sit down and focus ,no, I really am on top of it.  The house is pretty much picked up, dishes are done, no laundry that needs to be done. The kid is quietly playing with construction paper ,scissors and tape. PBS Kids is kind of just background music.

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We totally got this family outing thing. Right?  Just as long as we have another week to recover before attempting again. If only parenting was like that. The kid will be fully recovered from today by tomorrow morning. She will probably wake up at the most ungodly hour of six am. She will probably want to DO something.

I think back on today and all I can think is….THIS…SO MUCH THIS. I would have never seen myself being at this place had you asked but I was here. This was my life. I won’t let anyone dictate how it should go. Pain, fatigue, parenting, it really can all go together.

 

It takes ten minutes.

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Let me start off by saying I hate to exercise. Yup I said it. I would shout it from the roof tops. People will say, “Oh the endorphin high makes it worth it.” Do you know what I feel after exercising? I feel tired. I feel hot and sweaty. I don’t feel on top of the world and I certainly don’t feel “high”.

In January of this year we moved from a house with a fenced in yard with two dogs to a trailer with no fenced in yard, with three dogs. We moved in with my brother in law who has a dog. Do you know what these dogs need? Walks. They need walks. Do I like taking them for walks? Nope. Do I think of it as exercise? Nope. Its that kind of chore that kids whine about all the time. I look at it with despise. Here I am inside, out of the heat, all comfy and they need to go poop.

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My muscles are constantly telling my brain, don’t move. We like it right where we are. Well I am sorry to say but, my muscles lie. They do. They say they don’t want to move. They say they are perfectly fine where they are. The fact is though, they do feel better after moving.  One of the classic signs of Fibromyalgia is morning stiffness. We toss in some arthritis and its really not hard to see how they would THINK they don’t want to move. The body’s natural instinct is to conserve energy. It never knows when flight or fight is going to happen so it conserves.

When we first moved I could only do a ten minute walk and that was completely draining. To keep the dogs happy I had to walk them three times a day, for ten minutes. I have very very very slowly worked up to 45 minute walks. Can I always do that long? Nope. Sometimes its back to a ten minute walk. Sometimes I can’t handle the walk at all and they go on a lead out back one at a time. In the past seven months I have built a toolbox for taking these walks.

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1. Pedometer

2. Camera

3. Noticing a specific thing.

4. Bribery

A pedometer might seem like an odd tool. Sometimes I look at it every few minutes. Sometimes I don’t look at it til after my walk. I try to always at least look at it once in the first few minutes to make sure it is running. The dogs really need a minimum of a mile. To some a mile is fifteen minutes of their time and no big deal.  Sometimes it takes me all day to get that mile in. Other times I get a wild hair and try to do it all at once. My maximum at the beginning was a mile and half. I was walking very slow by the end and in so much pain. I did it though. I was determined that of all my sleep problems the dogs being awake was not going to be one of them. Now that same walk that in January was overdoing it, is now not so bad. It doesn’t leave me in so much pain I can’t function afterwards. It took me seven months to get this far so don’t get discouraged by lack of progress. Do what you can when you can.

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I say camera but its my phone camera. Its not fancy. I don’t think of myself as a great photographer. I take pictures because it makes me happy. Okay well and because I have a crappy memory.There are things that I only remember they happened because I am such a picture queen. It makes me happy. I love trying to capture the moment in pictures. I love playing with the pictures I take on Instagram. Often I take lots of pictures and save them to play around with on bad pain days. Sometimes I focus on one thing during the walks, flowers, trees, birds. Other times I decide to take a picture after so many steps. Sometimes just having that idea is enough to get me going.

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Then on the really bad days, I bribe myself. It depends on how motivated I need to get. I bribe myself with chocolate, with mountain dew, with a nap/   It doesn’t matter what it is. If it gets you up and moving, its a good bribe. I know there are people that judge based on the fact that I do eat snickers and drink Mt. dew. That the sugar is not helping. Its not, I know that and when its bad enough I have to resort to bribing myself its not even a concern. Typically I do stay away from super sugary things. Its why it works so well as a bribe.

Today it took me ten minutes. Ten minutes to get past the step, ow, step, ow, step , ow. Ten minutes to get past the grumpy I don’t want to take the dogs for a walk. Ten minutes to stop focusing on my pain and to focus on whats around me. Ten minutes to start enjoying the walk. Some people would have given up by this time. I know this about my walks. This is also in reality one of my tools. If after fifteen minutes I am still miserable. Its not going to be worth it to keep pushing myself. My body is not going to give up on the whole pain thing. I discovered this by watching my pedometer. It tells me how long I have been walking.

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Finally the only other thing I have to say is…..this is one way that I stick my tongue out at Fibromyalgia. Most doctors strive for their patients to exercise thirty minutes two to three times a day. By taking a minimum of thirty minute walks daily, I don’t feel so bad If I have to skip a day or two. It gives me that time to be patient with my body.

That moment….

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Tonight walking the dogs was one of those must push forward. Must do this type of thing.

We are walking and I look over at my daughter.

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And that moment just smacked me upside the head.

She is not a baby anymore. Not quite in the preteen area either.

She is growing up.

She takes my breath away sometimes.

The back pain didn’t get less. just less important, just less noticeable.

Sometimes just being a parent can beat back the pain.

Why don’t I feel like I am lazy then?

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I think if you live long enough with chronic pain and illness along the way someone will not understand. They will say things that they themselves don’t really understand why they said them.

“You are just being lazy.”

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” You are just too lazy to support yourself.”

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” If you were not so lazy this house would be clean.”

They are not inside our brain so they couldn’t possibly know the battle we fight to do things.

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The body’s natural defense is to conserve energy wherever it can.  Being lazy is actually our natural instinct. Once the primary needs for survival are obtained the body’s natural instinct is to cease activity. Most people can overcome this natural instinct with rationalization that there are other things to be done. The trash needs to be taken out, the clothes need to be washed, the dishes need to be washed. These things seem like they are basic needs but in fact the brain doesn’t automatically make that leap. There are other dishes, there are other clothes or no clothes, and so on.

It’s not that I am not motivated to do things, or get things done.  It’s that there is this war in my brain going on almost all the time. The body is sending all kinds of messages to the brain. I hurt. I ache. don’t move any muscles. my joints are too tight. my skin doesn’t like touch. I am tired. The brain is in return saying. There are dirty dishes we should do. The laundry is starting to smell it needs to be done. The floors look horrible. We have to go get groceries.  There is a great deal of compromise that happens because these two can’t agree most of the time.  We will get up and sweep the floor then we will rest. We will do the dishes for five minutes at a time then rest.  It’s also known as pacing yourself. That wording never worked for me. Thus I named it compromise and I suddenly was much better at pacing.

Then there are the few times where I actually have energy and motivation to get things done. What happens then? My brain completely shuts down. I can get a lot done as long as it doesn’t require thinking. Why won’t this washer door open? It’s stuck! It’s broken! Try opening it from the right side. That really does help. It just doesn’t occur to us right away, or until someone else points it out to us. Words flip themselves around as they come out my mouth so people can’t understand me. I start thinking as I am driving and just drive on auto-pilot and end up at home instead of the next store. Its wondering why you are suddenly shaky and feeling faint and then realizing you haven’t eaten for eight hours.

This is also not including the times that depression has reached its peak and none of the above really works. We end up passing the whole day staring at a television or a wall and can’t figure out where the whole day went. There have been times when the depression had such a hold on me I had to set timers to make sure I picked my daughter up from school on time.  Depression is not being lazy. Depression is its own monster. I could say it’s a chemical imbalance but it is so much more than that. It is depressing to day in and day out want to do things but to be physically unable to do them. It is depressing to go to doctor visit after doctor visit being only able to treat the symptoms.  It is depressing to not be able to put exactly what you are feeling into words that others can understand.  It’s not hard to understand why people with chronic pain and illness are depressed. We should be amazed that they got out of bed that morning let alone are dressed and are reasonably functioning.

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