What it is like

 

Social media can truly be a miracle sometimes. When asked a question you have time to think without your facial expression giving it away or making it awkward. It is a small thing but one I find very helpful. Recently I was talking with someone who had just gotten diagnosed with a chronic pain illness. It would be a matter of constantly managing it. She asked me, “What is it like? How do you do it? I just can’t imagine ever being okay with this. It is so distracting and I absolutely hate it.”  I agreed. I still feel all of that. It hasn’t gone away, more like it is just simmering.

Simmering, yeah that is a good description. Let’s go with that. It is a lot like cooking a meal that will never ever be done but you know it will be worth it.  It is a labor intensive meal like Thanksgiving or Christmas dinner. It is like you have four pots on the stove and something in the oven.

One pot is emotional/mental health. One pot is physical health. One pot is spiritual. One pot is work and in the oven is the family. Just like in cooking you have to keep adding ingredients and it can simmer on its own for a bit but it needs a stir now and then. Every so often, and often when you feel you have it the most under control, all the pots start boiling over. Sometimes some smoke even starts coming from the oven.  Normally though the boiling over happens one at a time and you can handle it and move on. You take a taste every once in a while to check on it as a means to see how it is coming along. Sometimes tasting can tell you if there is a problem. Sometimes it tastes good but really something has started to go bad you just can’t taste it yet.

Then there is the other problem. Suddenly an ingredient is no longer working. It is no longer bonding with everything in the pot to make it one solid thing. It could be that self-care has fallen off your radar. It could be that you cut back on exercise. It could be that you thought it was self-care by sleeping in on Sunday, but really you hadn’t done anything else for spiritual health so it really wasn’t self-care. It could be that you cut back on exercise–physical health–for good reason, yet it negatively affected another part of physical health, vitamin D.  Sometimes you find an ingredient you thought would work well actually doesn’t and you have to take it back out of the pot.  Sometimes while you are disposing of that ingredient another pot starts to boil over. Don’t forget you changed the dynamics of that one pot you took the ingredient out of so you will need to adjust the temperature!

Yes, but that is essentially life isn’t it? You have to add the chronic pain as well. You are right about that, we are handling that as well. Hopefully each of the pots and the oven are helping that. Chronic pain though, that is the tricky element. That is the part that makes the ingredients suddenly stop working so well. That is the part that says, “that worked for a while, but now, not so much.”

On the really good days the chronic pain is like the background noise of the dishwasher going. You hear it, you know it’s going on. You just try not to pay too much attention to it until it dings. When it dings that is when you find out that suddenly the soap you were using didn’t work or something got gummed up in the hose and the rinse cycle didn’t go off. Sometimes there is not even running water to wash the dishes by hand while all the other stuff is happening. Chronic pain does that. You find something and your brain says, “hey, thanks this is really working,” so it starts focusing on something else more pressing.

So essential pain management just becomes part of your routine. I can’t tell you when it happens, just that it does. I can tell you that I am never okay with it. Chronic pain just adds to depression and anxiety because you are constantly longing for what you cannot have. Things you used to do are no longer an option. It took quite a bit of looking around trying to figure out what I wanted to do. It took even longer for me to realize that what I want to do will always be in flux. Some days I am overwhelmed that my health issues are only going to get worse as I age  because they are degenerative. Degeneration is already an issue as you get older. It is just sped up in my case.

Some days though, I don’t care. I am enjoying the moment for all that it is. Those are the days that make all the above worth it. They balance out all the bad days where all the pots are boiling over there is smoke coming from the oven and the dishwasher just plain won’t work.

It takes a lot of self-analysis to make those good days happen. In the beginning, I fought that. Don’t look too closely. Don’t fix what isn’t broken. If it is hanging on by a thread and still working, it isn’t broken. There comes a time though that it just doesn’t work any more. Nothing about it works and self-analysis is forced on you. You have to sit down and look at it. You have to acknowledge the problem.

Slowly you realize that sometimes you could be a bit more proactive. For a time that is all it is. A thought. You don’t act on it. Then one day you do something proactive and you see it pan out that it fixed a problem you didn’t even realize was coming. I am not saying that before you know it you are doing this all the time. I am not. I know I am not. I know there is always room for improvement.

At the end of the day, that is what I tell myself. I think about the things I handled proactively and the things I didn’t respond to that I should have. Tomorrow. Tomorrow I tell myself, we will try again. We are not going to try harder because we are already trying our hardest. We will just simply try again. I can tell you that if you keep telling yourself this each night you will believe it. I can’t tell you how long that will take. It could take months. It’s harsh to think that, Months! I can’t take months! I need a fix now! So take a deep breath and remind yourself that slow and steady cooks the meal.

 

 

Ebb and flow of parenting with chronic illness

One thing that eludes me is consistency. Some of that is A.D.D., some of that is just life.  Chronic illness doesn’t really allow for consistency. It is super annoying.  It bleeds over into parenting. When my illnesses are flaring or acting up, I tend to slack off on parenting. I know I do this.I hate it.  I dislike how much TV she watches while I lay in bed. It takes energy I just do not have, to keep on top of her.  I want to always be that mom who is fully involved and happily multi tasking making dinner while the kid is doing homework. It is just not realistic for this to be happening daily though.

This morning  Actually it started the night before, we did homework for hours. Why hours? Because I was resting. She was supposed to be sitting at the table doing her homework. I could hear when she got off task. I made sure to point it out to her. When she was crying for like the fourth time I told her to pack it up. We would finish it in the morning. She is a horribly early morning child  anyway so why not. This lead her getting up an hour earlier than normal,because she was worried about not having enough time.  Between slurping coffee and getting really frustrated she is not focusing. The guilt starts. The guilt that I should have been more on top of this. I should have. I should have. I should have.  This is what goes through my head. I know on one hand, that I could have done things differently. Then again, she is nine. She is old enough to be responsible for her homework.

It’s not like I don’t know it’s coming. It’s not like I don’t know its due. It is more like, It just gets set aside in the hurry of every day. We set it aside because this came up or that came up. We set it aside because I am not feeling well,  we will do it tomorrow. I will feel better tomorrow because I rested today and I am going to take it easy tomorrow. That by the way never actually happens.  Then suddenly it is due tomorrow.

We get her homework packet Thursday after school. We pour over it like it’s the newest gossip magazine. Look how many pages of math! Oh, look you get to do this! I have an idea for that! We really do plan on tackling it. Thursday we are good about filling in her reading log, including the summary of what she read. We mark down what flashcards she did in Math. Friday, we normally have a family treat. However on the way there I normally make her read her book. There is a fifty-fifty chance it will get written down when we get home.   Saturday, sometime after I arise from the abyss of sleep, around eight am I look at her homework packet. We might even tackle some of it.  Then the outside is calling because it is fall in Florida. It is splendid weather outside. Not cold, not hot, windy but not windy to make it miserable.  In other-words, paradise. Sunday morning is out because church. The next thing I know its Monday. When I pick her up it’s all gusto. We are going to get it done. She reads. She does math. I am knee-deep in making dinner.  “Yeah I don’t care what you do. OUT of the Kitchen!” We have tomorrow. We will knock it out tomorrow. You get the picture.

Sometimes at the end of the day, I think “yup, nailed it today.” I got work done. I got the kid fed,to school-fed and in bed. I took time for me. Go Me! Then there are other days that at the end of the day. I think : ” Well breathing was really hard today.”

I think sometimes us chronic illness sufferers give the wrong impression about flares. Sometimes, it really is a flare and we never even saw it coming. We went to bed. We woke up having a new sympathy with road-kill. Most of the time though, it is not like that. I have weeks where I really feel on top of it. I have medicated at all the right times. I haven’t pushed the limits too far. I have eaten healthy and slept decent and taken personal time. Then it slowly starts off. By slowly I mean like from one day to the next. It just slowly one thing after another stops working. The medications are not as effective. I have more muscle aches than joint aches but I am still treating for the joint aches. Maybe what I did one week didn’t push the limits, so I do it again the following week. Uh oh. Limits reached and exceeded. What? I just did that!  I ran later than expected grocery shopping or cleaning so I had less me time in the car waiting to pick her up. It just slowly builds. Those kinds of flares are easier to recover from. It is like a light goes on and I am able to fix things. I start medicating  right. I give a little extra self-care. The times that it just WHAM! BAM! No thank you Ma’am. Those times we dread because so much of the time, we have to wait it out.  I can try to medicate. I can try to listen to my body and see if there is some craving it has. Most of the time, it is waiting though.

How do you parent when you feel like that? How do you parent when it’s not consistent?

You learn to go with the ebb and flow of your illness’. You learn to ebb and flow parenting. You learn to take advantage of when you do feel good.

I am still working on it.

thanks for the nudge universe

Saturday I woke up feeling like crap. No, not even crap. I felt worse than crap. I was thankful my daughter was able to feed herself and watch TV. I tried to be gentle with myself. I tried to tell myself I had pushed so many limits and needed the rest. There is this thing, called Mommy Guilt. It was a gorgeous day out. I should be doing something with her. I should not be letting her watch so much TV. It took an hour of me wrestling with Mommy guilt and how I felt physically. It took me that hour to convince myself that taking the kid to a playground was a good idea. It will be outside. The sun will be good for you. Moving a little will make it better. She will get her energy out. But I have to MOVE. I have to drive. I don’t want to drive. I don’t want to move. I don’t want to walk.  Then I got tired of my own whining.The problem with your body feeling like complete crap, your brain is often just fine. My brain is often going a mile a second. Feeling like crap often doesn’t curb that at all. Fine, we are going. I texted a few friends to see if they wanted to meet at the playground. At least then I would not feel bad about not walking. I could sit and socialize. It was also  a way to keep convincing myself to keep moving. No go. Between illness, work, and other activities no one could meet. Fine fine fine fine. My daughter asked if she could bring her soccer ball. Her newest obsession. Sure why not.

 

We got to the park. I made sure we walked first. It took some coaxing. Not just me, but the kid too. I was moving , I just wasn’t exactly happy with it. My body was shrieking louder than anything else.  We walked. Well I walked she kicked the ball around, whined that she wanted to go to the playground. The temp was a really nice sixty four degrees. The winds were easily twenty miles per hour. It was absolutely gorgeous. Okay and yes yes a good fifteen minutes into our walk I was enjoying it. Moving was helping. The beautiful weather and nature was filling me up again. I didn’t even realize I had needed it.  We were not walking to really burn calories. Just to walk.  I did track it on Runkeeper. I think our pace was like 29 minute miles. We walked a total of a mile and a quarter.  We had circled back to the car. I grabbed my water bottle and the book I had brought. I really had just grabbed a book. I tend to have multiple books I am in the middle of.  We wandered over to the playground. She ran off and I settled down at the picnic table to read. I found the book mark I had used. There were words that I had written down. A few months ago.

“But we must not forget that the only person whom we can purify . the only one we can do anything about is ourselves.”

And..

“The same unwholesome mental state may have to be conquered more than once…the formula is recognize no blame change even if that has to be done over and over again.”

The book I was reading : Visible Here and Now: The Buddhist Teachings on the Rewards of Spiritual Practice  by Ayya Khema.

 

There it was. The reminder I needed.  I didn’t even really need to read more.The lesson was right here. I read.I often struggle with feeling I am going backwards. That my mental thought process is returning to old ways. I tend to be a bit harsh on myself. Here was a reminder to leave the blame and just change.  I watched my daughter play letting the words I was reading soak into me.  Really before I knew it and hour had passed. The temperature was falling again.

Did I want to leave my bed earlier that day? Not even remotely.  I did and it was for the best. It empowers me to keep pushing the limits. Keep doing the things I don’t necessarily want to do but need to do.

We had just gotten home. I was back laying in bed. My daughter was reading, or suppose to be. I had posted pictures I snapped while we were walking on Facebook. I was looking at them and holding that peace that flowed when I was walking. A friend messages me that she was jealous of me getting out in nature all the time. Funny because I didn’t want to go out at all.  I get it universe. I get it. The forward and backward dance we tend to do, both physically and mentally, is necessary. It has its purpose. I don’t like it but I get it.  No blame, just step back on the path I want to be on. Step back into the mental thought process I want.

The hollows of homework hell.

When I think back to homework during my childhood. I normally remember how much it seemed I had. I remember that more than talking back and forth between a parent and me. I was doing my homework. They were doing there thing. It must be a childhood block. Because that is sooooo not what happens at our house now.  Don’t get me wrong, I would not trade this kid for anything. Sometimes though, I just wish she would DO her homework.

The alarm goes off 2:45pm. (Yes I set my alarm for just about everything. )

I glare at it.

Fine fine, we start this dance.

I do drive to the school. This is also my reading time. My me all to myself time.  Some days the alarm goes off again at 3:13pm incredibly quickly. I was sucked into the book world. Other days it ticks by. The clock and I have arguments. Oh come on it has got to have been at least five minutes.

It is now time to walk up to the school and pick the kid up.

I enjoy looking into her room and waiting for her to notice me. It does not take even a minute. It is like our bond is so strong she just knows. The smile that lights up her face. It is pretty awesome thing. The happy chattering about her day as we walk back to the car, I wouldn’t trade for the world. It is when we get home that well the next two hours I would rather just skip.

It is homework time. The time of the day my brain gets the most workout. Calculating how much I am spending on groceries and store hoping to get the best deal is much easier than this. Having A.D.D. myself means I have to be on the ball. I can easily get just as distracted as her.

She has a requirement to read thirty minutes a day. However with the amount of interruptions she takes, I make her read an hour. It equals thirty minutes. Trust me.

It goes a lot like this. She has snack and her supplement for A.D.D. She takes the dog outside for  a few minutes.

3:45pm

“Get your book and get comfy.”

“okay, I am ready.”

I set the timer for sixty minutes.

She opens the book. I watch her reading the page for a few minutes. I start my work.

She puts the book down and stretches.

“uh hem. Read!”

“I was stretching!”

I just silently roll my eyes.

She needs help with a word.

Instead of going back to reading silently, she reads out loud.

” read silently please. I am trying to write while you read.”

“Okay. It can be distracting huh?”

“Yes it can.”

She then proceeds to try and launch into ways she can keep herself from getting distracted.

Sigh.

“We can discuss this later, please read.” I say tiredly.

We finally reach the thirty minute mark. Oh yes. The THIRTY minute mark. Halfway done.

“I can’t read in this room. The air is blowing my hair in my face.”

“Nice try, READ!”

We finally reach the end of reading time.  So now comes the really fun part!

” Okay go write a summary of what you read on your reading log.”

She gets a pencil and sits down. I go to the bathroom.

I come back out to find her singing and the half a cucumber that had been on the table from juicing at snack time is now sliced.  I was gone maybe two minutes.

” Write your summary!”

“I am!”

“so how did the cucumber get sliced and you are not at the table and you are singing?”

“Well I only ate one slice!”

” That is not writing your summary. That is not focusing!”

“Mmmmmmmmmmmmmmmooooooooooooooooommmmmmmmmm.”

At this point I just point to her log sheet.

She writes her summary. She read all that time and her summary was “shes starting her journey to find the bad things.” She read twelve pages.  This is one I don’t mess with. Good enough.  I scribble my initials next to it.  I have finished checking everything I need to check and start dinner.

Math multiplication practice. We have been using  Thatquiz.com. It is a lot like flashcards. It also has a handy tool that gives me feedback and tells me what her recall is and how many she is getting right and wrong.

This part normally goes pretty well. She has to do three sessions. Each session is ten minutes long. Each time she is done she comes and tells me what her score was and what her recall is.

Well the first two do. The last one. She is in the living room I am in the dining room. Suddenly I hear more singing and talking.

“is your math done?”

“ALMOST!!”

A few minutes later she comes in to tell me her score and her recall.

“Now I need to look up my vocabulary words and read the meaning of the words.”

” Yes so go do that.”

She leaves. Singing and talking and bouncing.

She comes back. “Um I need my homework packet to look at the words”

This serves two purposes as they are also her spelling words. She has to type them in, so she is spelling it out , finding the letters, checking that she typed it in correctly. Then the reading. It seems to be just the right mix for her.  She looks up ten words…………it takes her thirty minutes. Singing the word. singing the letters. singing the definition. singing about whatever she thinks of. “NEXT WORD!” and we start over. Singing the word, singing the letters, singing the definition. Singing to the dog. If I am not on top of her she is soon dancing with the dog. “NEXT WORD!”  Singing the word, singing the letters, singing the definition. Chasing the cat. “NEXT WORD!” If I say more than that it will turn into an argument prolonging the homework. Typically this is when I am cooking dinner as well. So between yelling Next Word I am making sure the chicken doesn’t burn and the veggies are cooked. Some days I am trying to decompress from the day watching Criminal Minds or Law and Order or something along those lines while dinner is cooking. It all depends on how much I got done during the day when she was at school.

We start around 3:45pm. Homework is done, good enough anyway by six pm.

Dinner, shower and then she may possibly get thirty minutes to watch tv. That is the plan anyway. Sometimes I am so done that I forget what time it is and she is up past her bedtime.

 

 

Protect your time like a tenacious two year old

Mother’s often have unrealistic expectation from others. We should get up and care for others all day long. It should fulfill us and complete us. In a lot of ways it does. It doesn’t mean though that we don’t need time for us.  We can not keep caring for others continually without caring for ourselves. The problem is a lot of Mother’s feel guilty for taking that time for themselves.

I have found I need a mixture for my personal time. Time that renews and restores me.

I take a walk twice a week with a friend. Not just for health reasons but it helps mentally as well. We walk outside which has it’s own health benefits. It gives us time that we can actually take care of our bodies and still vent about what a tough morning it was. This works for me. It will not work for everyone.

The thing is, this kind of me time is not enough for me. I need  some time to just to be alone.

I also go to the school sometimes a half hour early but mostly fifteen minutes. . Not because I don’t have other things to do. I do. I could get quite a lot done in that thirty minutes. However that time is mine. I sit in my car and read. Sometimes I drink a soda with it. Sometimes I don’t get much reading done.  Sometimes I find myself staring out the window watching the trees blow in the wind or birds frittering here and there. It is my quiet time. I can settle my mind from the million and one things I do when the kid is in school and get myself ready to be fully involved in whatever my daughter needs me to be.

You can get this kind of stress relief in as little as five minutes of reading.

I tried not protecting it. I tried saying its nice if it happens but its not necessary. Seriously I can’t set aside even fifteen minutes for just me? Where if I don’t want to talk to anyone, I don’t have to. I have found myself when I am really stressed out, going to my reading spot early. Sitting there with the windows down, the sun streaming in. Vitamin D is something that a lot of people are low in. Five minutes of sunshine does wonders for you mentally.  Soaking up that sunshine is literally working on my happiness at a cellular level. Think of it as taking a vitamin if you have to.

 I protect that time like a two year old who is determined to hold on to a toy. It is mine. I won’t share. I won’t give it up. If I miss a day, it is not the end of the world. I do however feel the difference. I will say it is not always easy. It took a good six months of literally scheduling it, to achieve it , let alone get it to a regular basis. Just when I had it down. School was letting out. This year I am hoping to fall back into the routine much faster.  I refuse to feel selfish doing this. I refuse to feel guilty.  I know what I need and I am going to hold on to it like a two year old holds on to their toys!

My little activist in the making

My daughter’s anxiety level has been rising. I knew she needed a good snuggle time. It is one of the parts of chronic pain that annoys me, the lack of snuggling I can do.  Last night I knew she needed it more than I needed less pain.

She came in to my room in the middle of a Law and Order SVU episode. This is not something I normally let her watch with me. This episode though dealt with some humanitarian issues.  I had made a promise to myself recently. I needed to stop sheltering her quite so much from reality.  I am not turning down NPR as often as I used to. My response now is not always , ” That is not something you need to worry about.”  So we discussed women being forced into marriage. We discussed how other governments are not run like ours. They do not protect the people like ours do.  We discussed how in the end the woman got  her papers to stay legally in the United States but refused. She knew it was possible to get justice now.  I was really impressed with her understanding of the basic concepts. I was also really impressed I could carry on such a conversation at seven thirty at night. Where did THAT brain come from? The episode ended.  I decided that was enough of that kind of talk.  We switched to Animal Planet.  In an attempt for mindless tv for the last half hour.

We succeeded with mindless TV for the most part. We were watching Call of the Wildman.  There was the commercial for Redwood Kings.  A fairly new show on Animal Planet.

” I don’t like that show. They are mean people. Those are rare special trees and they are cutting them down. That hurts the animals and the trees and everyone. It is not very nice.” My daughter comments.

I am slightly baffled that she knows so much about Redwoods. I am slightly baffled that she has come to this conclusion on her own. I am not really sure why it baffled me. She has always been a highly sensitive person.  She has always been very nature oriented.

Somehow I found myself back in heavy conversation with her about this.  I found that she had found out about Redwoods through National Geographic. Of course, she did. I know she is constantly on that website. She watches full length documentaries from there. She loves reading the magazine itself.  Of course, she would know about them.

Then just like that, she is on to a new subject.

“Mommy know that stuff that comes in a can that you turn upside down and its all white and fluffy and airy.”

” No, no I don’t.”

” Sometimes people put cherries on top.”

” Oh whipped cream.”

“Yeah I wish we had some whipped cream.”

I turned off the TV and we snuggled down into bed.  She may only be nine years old but, I see a budding activist in her.

 

Cheap easy and quick just the way I like it!

For quite a while I was content to have the kid order hot lunch. Then I volunteered for a few months to help pass out breakfasts. The lowest sugar amount was 21 grams. The highest was 51 grams. I was appalled. What the breakfast printout said would never lead me to think there was this much sugar. The fruit was in syrup and rarely fresh. The whole grain breakfast bar had 31 grams of sugar all by its self. There were some good choices. Things I would give my daughter at home. However the other choices were so sugary and processed that it was decided we would not do school breakfast or lunch.

pretzel crisps $2.50

Bananas $1.16

Sugar snap peas $3.65

Carrots $1.69

Peaches /apples $2.93

Raspberries $1.67

Hummus $4.99

Turkey $3.89

Flatout bread $3.19

 Rice Dream milk boxes $1.00

Yogurt sticks $3.50

I had the cheese sticks from last week and celery from last week left over. This grocery stack will last us  a week worth of lunches and afternoon snack.  Some of this stuff I only have to buy once a month , like the bag of baby carrots. The flat-bread is also a once a month expense. My total for this trip was $26.67. Divide this by five days of school-it cost me $5.33 for lunch and snack.

She has access to her lunch box for snack time as they have the earliest lunch at eleven fifteen.

Monday’s Lunch

 Rice dream milk box, yogurt stick, cheese stick, banana raspberry peanut butter roll ups Carrots and snap peas.

Only half the roll up came home everything else was gone.

Tuesday’s lunch

Snap peas and carrots with ranch dressing, yogurt stick, cheese stick, Rice dream milk box, Peaches, Ham and cheese roll ups

This time only half the roll up came home but she didn’t tell me right away so the cheese was all melty by the time I found it. We discussed why this made me upset and how she can help next time. TELL ME CHILD JUST TELL ME!

Wednesday’s Lunch

Yogurt stick, cheese stick, Milk box, Carrots snap peas with hummus, Celery and peanut butter, apple slices and peanut butter.

One celery stick was all that was left.

Thursday’s Lunch

Ham and cheese roll up, yogurt stick, cheese stick, milk box, raspberries, peaches, apples, Carrots and snap peas with hummus.

Today she did not eat the sandwich but only a few raspberries and a peach slice was left. She also said she was not hungry at snack time so the cheese stick was left as well.

Friday’s Lunch

Ham and cheese roll up, Carrots snap peas and hummus. apples and peanut butter, milk box, yogurt stick and cheese stick.

This is the bread I get for the roll ups. It is a sneaky way to add more protein, and grains.

We still have enough left over that the only thing I had to buy today for lunches next week was fresh fruit. I can easily get at least three more lunches out of last weeks groceries for lunches. This will actually bring the total daily cost down to $3.33 for eight lunches and snacks.  Our school lunches are $2.10 per lunch and no snack.  This makes packing lunch for us the more affordable and nutritious option.

Do you know?

Do you know who you have made an impact on? In the wake of Robin William’s death this has been on a lot of people’s mind. We know how much celebrities can impact people. Over the tv, in person on stage, over the radio they reach out. What about the people you pass every day? Doing every day things. The cashier at the grocery store. The cashier at the gas station. The kid on the corner waiting for the bus. 

How true that rings for me today.  Today the kids here went back to school. Despite having already gone to the grocery store , childless I might add, I still forgot stuff. After picking up the kid, off we went to the store. We got the forgotten item, Milk. A few other things that we decided we simply must have. coconut water, carrot sticks, bread, to name a few. We go to check out and it happens that the ten items or less was backed up. We hop over to one of the regular lines. I notice the cashier notice us, her face lit up, smiling ear to ear. She could not get to us fast enough. I had no idea why.  She gushed over the kid and they had this big person conversation. 

“How was the first day of school?”  

“pretty good. We got to do a crossword puzzle!”

“oh that sounds fun! How did you do?”

” I got a lot of them! I think I did pretty good on it.” 

The kid bopped off, happy as can be. The cashier gave me my change. and says 

“I just love talking with her! She lights up my day!” 

I was kind of perplexed by this at first. This was not a grocery store I ran to often with her. We step outside. AH! It dawns on me. My husband and her ride their bikes to the store. To that store, to be exact. 

” Do you like that cashier?” I ask?

“Yeah she is nice. She smiles at me.”

Just like that, She smiles at me. She is good people because she takes the time to smile at her. 

A week ago , I probably wouldn’t even have noticed or given this a second thought. 

How many other people has my family touched? Do we ever truly really know?

We are almost at the car.

Mommy can you take the bag with the milk.. Its hurting my muscles.

Okay. But how are you going to grow your muscles.

MOMMY! I haven’t eaten any celery today!

Burst out laughing.

MOMMY!!! I mean spinach.. Whatever that stuff is that makes your muscles better.

For back to school day, the kids are not the only ones learning. 

I get her brain

grasping to keep sane because I am seeing my daughter struggle the same way I struggled when it comes to learning. If I am curious…. I got this. I absorb it like a sponge… When it comes to math. I have no interest… It does not create any curiosity in me. I really don’t care what two plus two equals. I don’t even care that its always the same. It doesn’t fascinate me in anyway. Before she even understood what math was… she was oh…numbers…booorrrriiinnggg….My exact thoughts. It was such a hard thing for me to learn that I learned to hate it. It is not just that though. Our brain’s struggle to retain the information. This actually even applies to the stuff we absorb and seem to master. Two days later. That is like eternity and I seriously can not recall that conversation where you showed me how to do this. Its like I have had Mommy brain my entire life.

When trying to explain it to a friend, I explained it like this. If it takes a normal person thirty days to establish a habit, it will take someone with a learning disability at least ninety days. At this point I know realistically it will probably take me a hundred and twenty days to make something a habit. Even then I can loose it and have to start all over again.  Its like sometimes you have to teach me the beginning  and the end before I will be able to comprehend the middle. It is not entirely about the big picture either. You can try to keep teaching me in the correct order and its like banging your head on the brick wall. Teach me what happens in the end, it falls into place most of the time. The problem is I know this now, thirty years later. She is just starting.

It looks like she has a similar form of Attention Deficit Disorder as I do. It has tendrils of OCD but it doesn’t fit nicely into either category. Right now she is hitting a lot of the criteria for dyscalculia. There is enough wiggle room though. Its not quite just that.

We already monitor her diet. We restrict sugar as much as possible. I stay away from artificial dyes and preservatives as much as possible.  We use alternative medicine for treatment. She has seen only one psychologist and even then she was not the focus of the appointment. I had such a bad experience with being diagnosed I can still remember how teachers changed how they were around me. I can still remember the change in the way the other kids saw me. While I don’t see that being as big of an issue at a Montessori school. I still worry about it. I know how devastating it was to my self esteem. How hard I had to rebuild.

I know if I go through our insurance , which would be a deductible thing, they will miss it. She won’t fall into anyone “treatable” diagnosis. She will kinda fit multiple diagnosis and not really meet the criteria for one of them. I remember years of I.E.P meetings and hearing people talk about me and about how I learn or don’t learn. Remembering that they never once asked me to explain any of my thoughts. ever. They knew all the answers. When I did grasp something they said I didn’t and changed the way they were teaching me, again. I know because I remember struggling with the same things she struggles with. I get her line of thought before anyone else, because its mine. Not just because I am her mother. We have a very similar brain chemistry.

As much as this shatters me, I need to pick up my shattered pieces and figure out how to help her. How to help her without hurting her self esteem. How to help her without being a detriment to her as well. It may take me to the beginning of the school year. I have a friend who will help me with tutoring her. I have to keep myself together when I see her struggle the same way I did and take a deep breath and help her. Help her quietly and firmly and most importantly calmly. I have to set aside the anger at teachers who for the past school year did not listen. Did not see her struggling. It is done, I have to go forward.

I have to go forward with my mom intuition and be extremely picky on who tutors her , how and when. When we do get to a professional, I need to have all my senses engaged. I need someone who does not just intellectually understands learning disabilities. I need someone who gets it. Who follows her line of thought and understands how she got there. For now, we repeat math lessons over and over and over and over. For now, we work with what we have. For now.

Never a normal doctors appointment

Friday mornings are my roughest. I am so ready for the sleeping in on Saturday morning that sometimes happens. If it doesn’t happen the staying in bed a little longer happens. Most of the time.  Having a doctors appointment on a friday morning seemed like a good idea. I am not sure why. I know how rough I am. I got the kid out the door and to school on time. I headed to the doctors office right away because traffic is still horrible here. The tourist and snowbirds are slowly going back home…..slowly.

This was a review bloodwork and make sure my medications were all still okay. I was seeing the nurse practitioner because of a schedule conflict the doctor had. Because I can never just be a cut and dry case of ANYTHING…… my magnesium and potassium are still fluctuating still on the low side….and my thyroid is off…also on the low side…but the hashimotos study and the antibody study came back completely normal. This makes perfect sense to me, because I am used to this kind of thing. The Doctors were a bit perplexed. As I have a heart condition as well and am on medication for that, she is a bit hesitant to start thyroid medication. My heart condition is fairly well controlled with medication, however that does not mean we should take risks. If we do start medication it will be with an event monitor to make sure that I don’t have any SVT episodes(read my heart goes wacko, arrhythmia). For now we are doing thyroid level checks every three months and checking the antibodies every six months.

She was incredibly pleased with my progress on loosing weight and walking. Both of these will in the long run also help my thyroid along with my heart and other things. The progress is also why she was hesitant to start thyroid medications, afraid it will affect my heart and set me back walking and weight loss wise. We discussed diet and how juicing is helping. She was a little bothered that I only drink juice in the morning for breakfast and water. I am not a breakfast person. Unless breakfast is at ten or eleven am. She said she would like to see some grains introduced into my breakfast but since I was getting such packed nutrition from the juice she was not going to push it.  I have cut back my soda and coffee and that too will only continue to help. I told her there is one thing I do , do……the week before my period. I go with what I want, not necessarily what is healthy. We also discussed the once a week frozen yogurt. She said she wasn’t concerned because it was frozen yogurt first of all and the amount of fresh fruit I add was enough she felt the hot fudge and carob chips were an okay splurge. 

I was on prednisone for several years. During that time I had issues with skin scarring and keeping my skin moisturized enough. When I went off it , it slowly got better and went away. It is back. However she was not concerned that it was a new thing. It can take several years for skin to return to normal and will take intensive moisturizing treatments. Oh more fun. I am so horrible at remembering to do this, plus my OCD hates the texture of most of the lotion and creams.

While my magnesium and potassium oh and vitamin D levels are just slightly below level, we are still gonna keep an eye on those too. Its a relief to know that I am not taking too much because the levels I take are fairly high. It concerns me. However my body just doesn’t seem to like to hold on to those things.  Malabsorption is so tricky. Sometimes I absorb things great. Other times not so great. There is constant adjustments needed.

We then discussed the upcoming trip in August to Epcot and camping. She doesn’t see it being a problem for a low dose muscle relaxer for a week. It is one less thing for me to worry about. I can work on progress with distance in my walking. It will help with endurance. Camping and keeping up to an excited nine year old will be hard. This is just a little edge off at night to keep me going for four days.

After such a good doctor visit and leaving so pumped. I treated myself to Starbucks. Just a single shot espresso. I add sugar to it and it reminds me of Cuban coffee I used to get with my Dad. Its a nice warm fuzzy memory to set the rest of my day with. Not to mention the boost of energy and possibly being productive with housework today!