Monthly Archives: June 2013

Why doesn’t your Triangle part fit in the Circle puzzle?

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So many people see mental illness as cut and dry. You have this illness….you must have this that and this, you must react THIS way.  If you don’t then you don’t fit in that diagnosis.If you are on more than one medication for your mental issues, you are drug seeking.

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I have yet to find one person’s anxiety that makes them react the same exact way as me. Heck my anxiety doesn’t even react the same every time. In fact sometimes its the last thing I think of sometimes. Then I realize that maybe I am anxious about whatever is going on….typically if it has gotten to that point the only thing that helps is medication.

You talk about your anxiety way too easily. You must have it well under control! You have been on the same levels of medication and the same medications for over a year now. Medication is working! I don’t see how your anxiety could possibly be as bad as you say it is!

When I look up information on-line, it shows mental health as being a very complex thing. So it gets confusing when you talk to others, even health professionals, that class it in very narrow categories. You would think they would know better to say something as belittling as it doesn’t seem as bad as you say it is. Know what that does to me? Shuts me up. Is that the best thing? No. Is it a healthy thing? NO! I start second guessing myself and often overlooking very significant symptoms. So I tend to just rattle on and on. Everything and anything that occurs to me. This is not the best way for me to get the treatment I need.

Not only do we often have a hard time communicating what is actually going on in our heads with the professionals that treat them. There is such negative continuations about mental illness. We are to be shunned, locked up, ignored, forgotten.  Is it any wonder that we keep it hidden and just retreat into our minds? It wasn’t that long ago that women with severe Post postpartum Depression were locked away at an insane asylum. Can you imagine?

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I was diagnosed at five by a psychologist that I had A.D.D. I remember feeling singled out and being frustrated the most. Frustrated because I wanted to pay attention I really truly did. I remember being told to just focus. My parents did not believe in medicating and they certainly didn’t believe it was a mental illness. They taught me compensatory techniques. These also proved to be a frustration as well. I remember being told that whichever one I was using wasn’t working, in my head I was screaming yes it does I get this! It didn’t matter. I didn’t have a voice in it. I was told I did. When caught using the technique that worked for me I was admonished and told to use the one that my IEP had deemed right.

I saw a primary doctor for over five years before I said anything about mental issues. FIVE YEARS.  She had me take an online questionnaire and bring it in. She sat down and for forty five minutes we talked about some of these things. She said I can prescribe something but remember its not a magic pill I would highly recommend you see a therapist as well. It took me at least another four years before I would admit that I needed a therapist. It was oddly enough my eighteen month old daughter who convinced me. I swept her room which now I can say was not super dirty at the time and she stood there clapping her hands saying clean room clean room. She should be glorying in dirt at this age. Not excited about mommy sweeping her room.

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After the first two appointments which were each two hours, it was decided I probably had spiraled from A.D.D to OCD.  I had not left A.D.D behind but now OCD was the primary driving force. I had a great therapist that I made significant strides with.  I actually never felt like I was crazy when I was talking with her. I suddenly was able to be discerning! WOW!

Mention that you see a therapist to others….watch them try and smile and nod and back away slowly. This is what our society has taught is the right defense. Do not associate with the crazies. The only ones that understand are the ones who are seeing a therapist or have seen a therapist.  I was even told, its fine to see a therapist as long as its short term.  If I stayed more than six months it was just for gossip. I was also told I wasn’t raised that way.  That I was just going to complain about how mean my parents are. Really at twenty-five that was my biggest issue? No, not hardly.

I did stay with my therapist for four years. I probably would still be at least doing phone visits with her. She retired. I mean really the nerve! It gave me a whole new perspective on that movie. What about Bob? I totally get it!

Funny enough though shortly after I stopped seeing her….and shortly I mean a week maybe, if that. Things in my personal life came to a head. I know it was the skills she had taught me that allowed me to put up the walls that needed to go up. To stand up for myself and my family and say NO that is NOT right for my family. This is what I need to do for my family and I. That its okay to do this.

I wish I could say that with these skills that I don’t let comments or behaviors bother me anymore. Its not true. The secret looks the nurses give me when they realize anxiety is in my diagnosis. The people who say maybe you need to increase your medication when depression still leaks through. Sometimes that is true. However that is not a positive or supportive thing to hear. I have only one friend who I accept that comment from. She knows what depression is like, she knows what nervous breakdowns are like, she believes in coping skills and medication. She also believes in taking care of yourself. She doesn’t say it at every mention that my depression is strong. I wish everyone with a mental illness had a friend like her. It would benefit our world in so many ways.

To find love and support instead of hate and fear.

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I worked misdemeanor probation for four years. I know what they would think with the mix of meds that I am currently on. I also know that they believe in rehabilitation and that proper medication can make a difference. I saw so many people who the system let down. Some who were unmedicated and knew they needed the meds, some who were unmedicated and refused there was a problem. Some who were medicated with the wrong meds, those hurt the worst because they knew they needed help and were still let down.  When the system fails for so long and then gets it marginally right before going off in left field we had those who were now mixing the right medications with the addicting behavior they had when the system failed.  I feel blessed that I had people around me who made sure I got the help and the medication that I needed. Because when I look back I can easily see me falling into that last category,and it scares the crap out of me.

All this to say that when I tell people my diagnosis’s they are confused. How can you be OCD and ADD? How does that work? Its beyond alot of people to realize that my diagnosis’s are pretty much custom ordered. There is no other brain JUST like mine. No one else will have a chemical imbalance to the same exact degree as me.Not to mention that what works for one person might not work for another. I have a good friend who has severe anxiety..whereas I can say to myself that’s not a rational thought and push past it, she can’t. Where my anxiety shut me down and I can’t function, she functions just fine.

There are so many “invisible illnesses”. Its a shame its has gotten this bad. That physicians even question their patients to the degree they do.  The only way we are going to break through to visible on all invisible illnesses is awareness.  To raise our kids to understand sometimes you can’t see the issue,but that it doesn’t mean it doesn’t exist. To teach them to stand up for themselves and to demand the medical care they need. To not put physical health above mental health, to see them as equals. To research their diagnosis’s on their own. Don’t just take anyone’s opinion. Read enough so you know what you are dealing with. Don’t assume that the professionals are going to tell you everything, they simply don’t have that kind of time.

I can’t do anything about those who make uneducated ignorant comments, but I can not let it affect me. All we can do is try and be non-judgemental of others and hope for the same from other.

Silver linings and all that jazz

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Normally I try to be very open minded. I will admit when I realized that our guest speaker today was a Rabi….I wanted to just go home. This wasn’t going to be my cup of tea.  There was no way I would convince my daughter to leave.

I didn’t….I decided if it was a really annoying sermon that maybe I would just pull up Darwin’s book on my phone and read instead…..I was there for many reasons…sometimes the sermon isn’t one of them, sometimes it is.

So then the service started. Unitarian Universalist are pretty open minded people. We like to be intellectually stimulated. Today did not fall short of that.

At the words for all ages, read children’s time, it was about finding the silver lining in any situation. Okay okay. I get it..not to mention it was incredibly cute to listen to the story they were using and what the kids thought silver lining meant.

I had already decided what the sermon would be about. It was not what I thought. Reverse the curse, repel the spell, was the title….Who would have guessed it was about finding the silver linings in life’s situations. Who would have thought it was about looking past what your immediate want is and finding what you needed.

It was a very good sermon, very entertaining and interesting, Definitely one I would recommend others to listen to. Intellect stimulated:check! It did have me thinking.

One of the quotes he used was from Dr. Wayne Dyer. ” If you change the way you look at things the things you look at change.”

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I kinda feel like I have already done that. The whole saying I have Fibromyalgia but it doesn’t have me. Sometimes though I forget it can apply to more than just Fibro.

The first stage was reading everything I could get my hands on. Asking for this test and that test and ruling things out. I wallowed in anger and whiney land and grumpy goo for awhile…It did its damage. All I can do is go on from here.

Then came the research part where I studied what nutrition I needed ……Fibromyalgia has made me stop and look at my food intake in a very serious way. To give it a close scrutiny and if necessary testing different blood levels of nutrients. To compare and contrast multivitamins, to see which is the best for me.  I have been shocked at what is in some  of the vitamins that are out there. Silver lining here is that by studying nutrition I am boosting other organs and giving my medications a fighting chance at working. Not to mention influencing my daughters eating habits which will have long term benefits.

Now I am at the point that I know how to manage my illnesses. It has gotten to the point that I get tired of managing. No longer is the mix of  coping techniques , deep breathing, gentle stretches, pacing, and medicating and slathering biofreeze or Icy hot on. I get tired of looking for the positives of what my life is now. The depressions from dealing with my illness are getting longer and sneakier about how they come on.  Frequent self-analysis and writing are my only refuges now.  The silver lining here is when things touch me , they really really touch me. I am getting to know who I am better and better and being more confident and content with that. Its not a bad trade off.  There are days though…..that I just want to flick off the happy cheery be positive things. I don’t want to look at my behavior. I want to pull the covers over my head and ignore the world. The funny thing about that is that its normally after I have pushed myself and I actually NEED to rest.

Anyway its taken me awhile to get to the point that I can look at daily tasks with a different view point. Yes we walk the dogs twice a day and we have about three paths that we use repeatedly, does that mean I have to suffer through it? NO.  Sometimes we snap lots of pictures. Sometimes we look for birds. Sometimes we just talk. Sometimes we just walk in silence. By looking around at what we are walking by we change the focus of the walk. Its not just about walking the dogs anymore. Its not a duty or a chore anymore. True not everyday is like that, not everyday do I go on the walks.Sometimes the pain wins. Sometimes I have to rely on my husband or brother in law. Sometimes I just send them out back with my daughter.

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When it is sooooooooooooo easy to be the grumpy whiney person…..I am starting to see the silver linings more and more.

I still have my days and times that I want to whine. I make a pretty good eeyore or grumpy bear(carebears).

 

What I really need to do is combined The Tao of Pooh, The Te of Piglet(two books written by Benjamin Hoff) and add a little bit of Dory and A little bit of Marlin and a dash of Nemo.

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We need to just keep swimming , swimming, swimming, Just keep swimming…..keep things simple and uncomplicated and just effortlessly do things, Have the power and the virtue to keep going, to easily forget the bad and be amazed by little things , to love people and never give up on them. Toss in some sarcasm and we are totally good.

 

So yeah its a garbled mess but really isn’t that what we all are on the inside. If we stopped and looked at ourselves.

During that sermon a part of me was like yeah……silver linings….yeah.

I think we forget to allow ourselves the grumpy time….If I don’t allow myself that time. Even just a little bit. It weighs down on me. It smothers me eventually.

 

So I will just keep plodding along, Just keep swimming even if its uphill. I will keep searching and striving to find things that help,the things that make this journey possible.

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Sometimes that is the little things.

 

 

Sunscreen is my make-up

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We live in Florida. Sunny paradise Florida. Yeah….about that….

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Summer in Florida includes waking up to 75 percent Humidity, sunny mornings and stormy afternoons.

Summer in Florida means your morning make-up is now Sunscreen with sunblock in the bag.

Summer in Florida means your perfume is now ode to bug repellent.

Summer in Florida means you drink more water than is in the ocean and barely stay hydrated.

Summer in Florida means that my fibromyalgia is going to flare if I am not careful. For Fibromyalgia and I we have had a love-hate relationship with heat. While it does help to loosen me up in the morning it can also make me not realize how much my muscles are doing. Which means I forget to pace and end up in a pile of pain by the end of the night.At which point I want nothing but cool air  and end up stiff and sore,which normally includes a hot Epsom salt bath…go figure.

People will say well if you don’t like the weather move. I have thought about it. Many times.  Even though I complain….Florida suits me. Its grown on me while I have grown up here. There are parts that I love and would miss terribly. There is a raw beauty here that I have found no where else. Besides its just my nature, I would find something I don’t like about that place too. Like snow, that’s so much work! Rain I can handle but it can’t be on the coast where barometric pressure will fluctuate. Have I missed anything? Since I am also allergic to at least half the outdoor world that is pretty much a moot point.  Plus I wouldn’t give up the people I have in my everyday Life either. I know I know they would be just a phone call away, Its not the same, its just not. Their support has helped me get where I am today and I am not attempting a future without them.

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Even if that means that I see this when I get in a car after like….oh ten minutes…yes that says 104 degrees Fahrenheit. It is chokingly hot sometimes….okay…most of the time. Sometimes it works to my advantage..If my hands are particularly crampy that day I can rest them …very carefully…on the dashboard to get some relief.

The only way I survive summers is a good strong multivitamin, gobs of water, eating as healthy as I can and my secret weapon is Green Goddess juice.  Okay okay Chocolate, coffee and Mountain dew get their fair share too. I will say that I try to drink at least twelve ounces of water for every non-water drink I have. It is super easy to get dehydrated here. Dehydration is a big issue when your muscles already like to go all crazy whirly- whoo on you.I actually eat a lot healthier than I typically admit too. I love sweets. They are a lot of the time my motivation to stay active. We eat a lot of fresh fruits.I can’t resist at least one apple a day…We were eating a lot of veggies for snacks. Its not just for me and my body’s needs its also to set my daughter up on healthier eating habits than I have, so far its working. SHHHH it will be our secret.

It sounds silly but I actually plan for rest times. I try to spread things out over the week.  Even though my daughter could probably go from sun-up to sun-down eating everything in sight and still be fine. Rest is important for her too. We try to plan outdoors things early morning or late afternoon. If we do happen to have several things on one day I try to make the next day really low key. Not only will I need the rest and recover time but so will my daughter. Resting in between activities gives me the time to not only process whatever activity we just did but also allows my body to catch up a bit. I used to thrive on constantly being on the go. Now not so much.

I was never allowed to just throw school out the window when it got out. As much as I hated it , I also see the wisdom in it now. I try to not have her do sooo much that she is overwhelmed. Typically she gets one math sheet , one handwriting sheet and two reading comprehension sheets. We also enforce twenty minutes of silent reading as well. Then we are so super sneaky with trips to aquariums and zoo’s and such so that its fun and learning combined.  By having it a given that school work will occur sometime during the day, I have also created an outlet for me. If the barometric pressure changes suddenly and my joints are screaming. We can do school work for a bit and I can either rest or medicate. We also add to her chores during the summer, she is home more. Also she can be a little tornado.

Mostly we get along through the summer. Its taken me a few years to figure it out. How to balance it all.  We are getting there and with some prep time and as she gets older its getting easier…..well in respect to surviving summers….some other stuff…not so easy.

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However as I have been working on this blog today it has not escaped my notice that we are still in the early days of summer. I may be a tad ahead of myself.

This is said thirty minutes after I tried sending her out back to get that last little bit of energy out while also letting me focus on cooking dinner. To end up two minutes later with two wasp bites a pile of screaming and crying. Nothing like that blood curdling scream to get a mommy running. Ice pack benedryl cream and lots of hugs and snuggles later, dinner is eaten and I am pretty sure we have exhausted the kid by this time.  Only to turn around to her hopping around the living room to Dora the Explorer.

Perhaps I should wait until the first day of school to decide how this summer went?

A bittersweet Fathers Day.

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Fathers day….so many mixed emotions for me. While I love watching my daughter with my husband…..I miss my dad.

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September 16th 2000 my husband and I got married. My father walked me down the isle…We were a little too ready and didn’t wait til the last bridesmaid got to the alter…..Nope We were sure we were suppose to go when she got to a certain pew…Even the pastor was trying to stop us…nope…wasn’t happening. We were walking down that isle.

January 2002 I got my first pregnancy test. It was really hard to make it to that first appointment. January 31st finally came. Everything collapsed. There was no heartbeat and my uterus did not feel like it should. That ultrasound was the saddest thing I had ever seen.We were trying so very hard. Why was it eluding us.

February 5th 2002 I was kinda flipy floppy about if I should go have lunch with Dad or just stay at work in the break room. I called him. He had plans but I was welcome to go with him. Naw no big deal, perhaps tomorrow. We went on our ways……little did I know that tomorrow would not come. An hour and half later my mom called to say he had a heart attack and was on his way to the hospital.

My father wasn’t there to hold his first grandbaby. Oh how I missed him that day. Missed his big grin when he was super happy. Missed seeing him hold my baby.

Father’s day is bittersweet to me for this reason. Its the one day that  I know I will think about him.

My anxiety has been super high the past week and I couldn’t figure out why. See that’s the sneaky thing about anxiety…it recognizes things but your subconsciousness kind of suppresses it until someone says something and then its like…..oh…that’s it…that’s what spiked my anxiety. That’s why I have been having panic attacks out of nowhere. I didn’t really associate the two right away. Trying to protect myself from even eleven years later to still miss him, mourn him. To see my daughter with her father and her grandfather and know that there is one missing. The picture doesn’t seem complete. Not everyone gets that. They don’t understand how that could be the cause. That I want to protect myself from the emotions that will come. Others will get it right away. I feel things very deeply and my anxiety is closely tied to that. There isn’t much I can say that will convey it any better.

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I see alot of my father in my daughter as well. I know his physical form is gone, his spirit is definitely strong in her sometimes. She has spit things out and I was just stupefied that she said that. She has never met him but his words just came out of her mouth. I like to be outside and hike in good weather. She enjoys being outside despite the weather. It reminds me of him working on his compost pile.  She appreciates old cars which is no surprise. My husband and I have a big love of them. My mother drives a 1956 Chevy Belair. She just has this quiet appreciation that he had. Its hard to describe this detail. Its just there.

We have had discussions about him. She knows who he is.  It seems like a small comfort but it really isn’t. She knows who he is. Its important.

Fathers are important even when they are gone. There impact lasts.

So yeah a bittersweet Father’s day it is. It doesn’t take away from the day at all. It adds to it. Makes it even more special.

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So here is to future Father’s days…when she is older and he annoys her…I hope she looks back on these blogs and these pictures and remembers…Remembers how lucky she is to have a Father who is there. Who cared. Who loves her. Who has done a great job thus far shaping her into the wonderful lady she will be.

Sticks and Stones…..

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will break my bones but words will never hurt me.

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Remember that. We said it. However I don’t think we realized until much later that it wasn’t true. In fact there was nothing true about it at all. It surprised me how old the saying is. When I looked it up on Phrasefinder..It was an old adage by 1862. I think it shows how much we want words to not harm us.

Words hurt. Words can be brutal. Words once spoken can peck away at you over and over until you believe them. Its easier to believe words that bring you down than those that lift you up.

Sometimes its a continual conscience decision to think positively. There are some words that are just cruel. There are some words that haunt. Often its from people closest to us.

I don’t know which ones hurt more the ones from those who know us or the ones who don’t know us. It took me quite a while to get to the point that hurtful words from someone who doesn’t know me doesn’t bother me for long. Easily less than a day. A few times I barely gave their comment a thought.

The sad truth is that words can be abusive, harmful and even detrimental to your health.The sad truth is most people won’t admit that.  The sad truth is the emotional/verbal abuse is often overlooked. Its often made to be very insignificant and trivial

It takes a long time to recover from it. Then there is a little part that never recovers from it. Its always there whispering to you at just the right time. When that little area is prone to be vulnerable.

Even after four years of therapy it still gets me.

I find myself wanting to protect others from it. To help them get out of that situation or environment.

I can’t save everyone. I know that. But I want to.  What I can do is be here, listening, offering words of encouragement and advice. Sometimes I forget how helpful that can be. How powerful that can be in someone’s life.

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When you deal with a chronic illness that is not visible, people say things. Not only do we have to deal with what others say, we also tend to be pretty harsh on ourselves as well. There are many days that I struggle to get up and get going. To get out of bed. I want to. I plan to. Then I am waking up all over again. I struggle with my own feelings that I am being lazy and irresponsible. Others comment…What have you done all day? Its easy to agree with them. It takes alot to say. I survived today. I kept breathing, I slept. I am still alive!

I found that if I wrote down what I planned to do that day. I felt like I accomplished something when I crossed off something. Even if that was take pills. Eat. take a shower. When I started that I would get ridiculously long lists. It was then that I realized just how much energy went into each little seemingly insignificant task.  It seems simple to some people to just drive my daughter to school and come back. Why would I need to rest or recover from that? It seems like they have valid reason to say I am being lazy. That I don’t want to work.

Words. They often carry much more weight than we give them credit for. Sometimes they can be a judgement. It doesn’t matter if it is a justified judgement or not. The damage is done the moment they are said.  Often without thought of the inner struggle of what someone is going through.

Its something I still struggle with. I say things without thinking of what the other person is going through.  Its hard to remember that.

My daughter and I like to listen to guided meditations at night. Not every night but at least once a week. Its helpful to remember to take a breath and think first.

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A few years ago I would not have seen the wisdom in choosing all my words carefully. Sometimes I don’t.  I am not perfect at this. I still wish to make sure my words are only helpful. I find when I don’t watch what I am saying its often in a venting session. Those I feel are okay. In fact they are needed.  Balancing  meditation, peace, helpfulness to others and our own need to vent frustrations is something that I think we never master. It is a worthwhile endeavor though. Its something that helps us thrive in our illness. I will do everything in my power to thrive. Even if that means reading sticky notes with positive mantra’s multiple times a day.Even if that means slowly shedding my eeyeore shell and becoming more like Tigger.

The long wait.

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In many ways today was like waiting for my friend to go into labor. You knew the baby was coming. You just weren’t sure what time.  Instead of waiting for contractions I am watching out the window waiting for a minivan.

For the people who know me, Know how big of a deal it was that I let my daughter out of my sight for a whole week. Of course with this specific person its been alternating houses for sleepovers for almost two years.  There was alot of trust built up. We have known each other four years and change. Their oldest is seven months younger than my daughter. They have three girls. We have one. They are as close as sisters. They fight like sisters. They play like sisters. They have been such a blessing in our lives in so many ways.

So it wasn’t a just here take my kid for a week. At one point my closest friends didn’t even think sleep overs would happen. Just the thought would send me into a panic attack. If I wasn’t there my husband was there. When she was nine months old. She went to Seaworld with family and my husband tagged along. It made it more bearable. But I still was a worried mess. Then her first tooth broke through all the way. I wasn’t there. I was crushed.

My daughter was the long awaited child for my husband and I. We lost a pregnancy and we had a turbulent pregnancy with her. Fighting with preterm labor starting at 23 weeks. THen a rocky delivery . I often say I have earned my right to paranoia…

The first day was pretty glorious…Hubby went to work and no one woke me up. No one was there asking me to play brain pop, or if we could go catch ladybugs.  I got the whole bed to myself that night too.

The Second day…..I was ready for a phone call. It was still nice to have a bit of freedom. To not have to think about why this ladybug only had four dots and this one had lots. To not have to think what kind of butterfly this caterpillar would turn into. Feast day with a friend was a nice way to distract myself. Then off to get meds and do normal errands. Minus the kid tagging along. Walking the curb in the parking lot or trying to balance on the big red balls on the way into target.

Day three okay the anxiety is pretty high. Kinda like a back burner that was starting to bubble over. Slowly so it was hardly noticeable. The little bubbles escaping down the sides…..me biting my nails obsessively. A trip to the paw park and some distraction.

Day Five. Finally get a text that they are going to call. I can’t wait. I need to do something. I need….I need….I need to clean. I am at there house. We haven’t gone to the paw park yet.  I vacuum most of the rooms, run the swifter mop, wipe down the counters. Adrenaline is wearing off when they finally call.  Have you ever heard your kid on the phone? Her voice sounds so much different. She sounds even younger than she is. Super cute at the same time. Do others hear her voice this way? I missed the first call and they left a voicemail. I have listened to that voicemail like ten times already.

Day Seven…..waiting. and waiting. and Trying not to be on edge. I managed to keep myself busy  in the morning. I needed the few hours til I thought they would be home. Now is she home now. was that door slam them? I could look out the window from where i was laying and see if the minivan was here. I think I spent more time watching that window than the tv or the fb newsfeed. Was I remembering correctly? They were coming back sunday right? Um…okay visualize their kitchen table.  Visualize what was going on around us. Okay pretty sure there was some talk of spending the night Sunday night at perhaps the halfway mark or three fourths of the way mark.  Fighting the urge not to repetitively call her cell phone. I know she forgets she has it. I know its often set to vibrate so she doesn’t hear it. Feeling like it will be a long night. I take my emergency anxiety meds. Mark it down in the calendar to tell the therapist I see for fifteen minutes every three months. Its something. Its all medicaid allows…again…its something.

Honestly I am quite shocked that I didn’t get late night phone calls from her crying that she misses us. Its just a reminder that she is growing and is and was ready for this. Probably long before I was ready.

I know the few days prior I tried not to think about it. I tried to stay in that level of denial. If I don’t think about it, its not happening.

Not only am I trying to hold back my anxiety about where they are and how close they are and what they think their arrival time will be……I am trying not to text or attempt phone calls too often. Then I worry about how often I called how often I sent a text. I try to tell myself if my friend is her normal self she won’t even notice the phone until I tell her I texted and called.

I know they will get here when they get here. I am just so ready for hugs and kisses and snuggles and giggles. To answer fifty five million questions before noon. To hear every little detail of her trip she wants to tell me.

So I sit and wait. I am hoping the premiere of Alaska the last frontier and then a new one called North America…I hope it distracts me and if they are staying over that I fall asleep. Not toss and turn. Not hold my phone in my hand the entire night. Just sleep I don’t even need to dream. Just sleep. Time passes. And just know that when she does get here we will snuggle and talk and watch marathons of our favorite shows.

One more quick look out the window. I know when that minivan really is there, I will say how could I miss this? I totally would have seen them. I am sure even watching Tv in my PJ’s I will keep sneaking peaks…And the phone close by.

So they will be home today. Sometime. I am actually much calmer than I thought I would be. I was up several times last night. Checked my phone each time.  What did surprise me was I did not lounge in bed. I was awake at seven thirty and out the door by eight fiftteen…Took neeka to the paw park then an emergency vet visit for loose stools. I really did expect to be more anxious today. Perhaps it is because I am sitting at their house. I will know the second they get home. It doesn’t mean I don’t jump every time my phone goes off.  It doesn’t mean I stop looking out the window. Perhaps Neeka and I will just take a long meandering walk to pass the time.

As I reread what I have written I am just so struck by how far I have come in my progress against anxiety.

Brain don’t listen to the body.

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If I had listened to my body. I would not have gotten out of bed this morning.  If it had been just my dogs needing to walk..I may have put off getting up a few more hours.

My body begged for mercy.  I left my boys to my brother in law and my husband.  If I get up and going and don’t think too much I can get my motivation before my brain figures it out. Its mostly a daily battle like this between brain and body. Most of the time there is a kid fueling this battle a bit more.   A few slurps of coffee. get clothes on. Medicate. Top of coffee and out the door.

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Neeka needed to run.

She needed her time at the paw park.

Today I planned on exploring this new trail I found behind the paw park. My body was less than thrilled with this idea.  So I sat on the bench and tossed balls for Neeka and hoped the medications kicked in. or the coffee.  Even still forty five minutes later Neeka is making it obvious she is done sniffing butts and chasing tennis balls. Ugh.  This is where I like walking dogs.  She just pulls me along for the first few minutes.

We stop for her to romp in the little stream first.

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There is just something about watching her that makes it hard to stay in my grumpy in pain mood.   So off we go. I have a small water bottle…alot less than what I would prefer to have. It was enough though.

The first bit I know I trudged. I kept looking around desperately for something to catch my interest. A few minutes later I check my pedometer. I know in my head what I want to hit for my goal. I just don’t know if I had it in me today. Then I made myself promise not to check the pedometer again til I got in the car. Just breathe. Just be. I wasn’t going to listen to my muscles protesting. I wasn’t listening to my joints creek.

The majority of this trail was in the blazing sun. Probably not the best time of day to be taking this walk along this particular path.

We come to a bench and Neeka catches a grasshoper and her frolicking was just so cute. So we start off again with a renewed determination to enjoy this. This is the last day I am kid free. This time is for me.

I start looking around with renewed interest and determination. I see this dock across from us. I can see it with some warm tone embellished by instagram.

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The forgotten dock. There were vines crawling all over it and it just looked so serene. This…This is what I need.

 

Now my drive is in full gear. We follow a side trail off a little ways. Its shady and we definitely needed the break from the beating sun. Neeka found some grass that looked yummy. I realized from our previous trips to the paw park she likes to eat this tall willowy grass. After the first day and no vomit or bathroom problems I let it go.

We rounded a corner and it was like we found a place that time had forgotten.

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I was struck by the beauty. A little piece I hadn’t realized I had been holding on to just released. I wasn’t listening anymore to my body, I wasn’t listening anymore to how hot it was. I was there.

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It didn’t seem like I had to look very far to find something interesting.  A large butterfly flittered by.  An owl took off from a branch right next to me. Its wings so quiet for such a large bird. That quiet space in my brain was where I was. It was where I had wanted to be. Where I had needed to be more than I realized.

We wondered around in the back shady trails. Not really with any intent. Just enjoying the trail. When it forked we went the way that looked the most interesting.

Dogs are great companions like that. They don’t need to talk, or bark, but when you do they are attentive. Sometimes we chased a smell down a little side trail. Sometimes we followed my curiosity. It didn’t matter.

I let Neeka off her lead for a bit. Trusting her to come back. I have been on other hikes with her owners and her. I knew she did this with them.

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I tossed sticks out into the tiny little rivulet of a stream. She happily chased after them..pounced on them…and brought them back. Where she promptly dropped it and then rolled all over it. It was her stick. It made her happy.

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How can you not laugh at her antics? She takes so much joy from such a small thing.

I was running out of water so it was time to head back.

We came to the end of the trail and up the few steps to the water fountain. Refilled my water bottle and gulped it down. Promising myself to take it slower with the next one.  I refilled it again and dumped that one all over Neeka. Cooling her off a bit.  Refilled again and walked to the car.

Finally checked the pedometer. I knew by how my body was starting to scream it was at least a mile and half. It was 1.87 miles.

Hot and sweaty we rolled the windows down and Neeka prompty put her head out the window.

Once we got home we did a short walk around the block. Goal achieved. 2.0 miles. You may think wow thats alot. You may think thats barely a walk. Keep in mind it took me an hour and half on the trail to achieve that plus the fifteen minutes to walk the block.

I jumped in the pool shortly after that. Just floated around. Letting my muscles enjoy that weightless feeling. A few dips under the water. Some more floating.

Took a shower to finish it off. Plus the amount that I sweated on that trail was ridiculous.

I left Neeka curled up on the futon sound asleep.

Driving home I feel renewed. Refreshed. Centered and connected.

I may have Fibromyalgia but I don’t have to listen to it all the time. I have gotten pretty good at knowing when its just normal groaning and when it is flare groaning. As much as I don’t want to move. I know my body needs it. Much more than it will admit.  So most days I tell my brain not to listen to what my body is saying. To just push through it. To just do what needs to be done. Sometimes that means I am gritting my teeth literally. My TMJ doesn’t like it and yes in the long run it raises my pain level. Sometimes I have no choice but to get what needs to be done. Then sometimes I push myself because I know I need it. Even if my body won’t admit it.

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This magic pill

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I am so ready for a magic pill that just gets rid of it all.

 

All at once.

 

No medicating to fix side effects.

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I think that is what tires me out the most. Managing my chronic illnesses.  I take so many prescriptions and then supplements and still there is typically at least twenty five percent of the issue not even touched by it all.

For awhile the big argument my husband and I had was why take a pill that doesn’t work? Why are we paying for stuff that doesn’t work?

Well I am not saying they don’t work at all..Some just take the edge off…Some of my pills can treat two of the issues….So its like they treat it a little bit…I get some relief…It takes it down a notch for me. There are others that make a subtle difference….I don’t really notice a huge effect but take it away and a few days later i am like..huh..maybe they did do something after all. Then there is the funny thing about Fibromyalgia, sometimes the same exact pills will knock me off my feet. Perhaps it was a lower pain day..I didn’t need as much. However if you try to guess that…Then you spend all your time waiting for your meds to start working.

Its impossible to find that one magic pill that covers all the symptoms.

I really wish I could find it. Every time I have had to switch doctors the first thing they want to do is take me off everything and start over…. They don’t like my explanation. I don’t have a medical degree , i am just the patient trying to live life every day. I do however know what my medications are for and why I take them and what they help…Neurotin is for the nerve pain in my face and sometimes it even helps with the nerve pain in my lower lumbar back. It also helps my anxiety.  Its also kind of a rebel in that it does make weight loss very hard as well.

Part of the managing is made harder because often with fibromyalgia, the medication stops being effective. I tend to bounce between prescriptions to all homeopathic, then a mix of the two.

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I have done aqua therapy , chiropractors, massage therapy and a few other options. For me they help, for a few hours. Then I can feel it going back the way it was. The other issue is cost. Most insurances won’t cover it, or they reimburse you, and some cover half of it.  Nothing was more disapointing than a week after finishing  a six week aqua therapy program I was right back to where I had started and out two hundred and forty dollars(that was with insurance).

This is a pretty short post. I could go on and on about this because I am tired of it. It tires me out when I realize  a med isn’t quite working as well as it used to. I know whats coming. I just needed to get this out. Sometimes just complaining about it just a little makes it easier to get motivated to do something about it.

 

What no one tells you

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What no one tells you is that who you are changes…..
What no one tells you is that you are continually finding yourself
What no one tells you is how hard you will work to not be labeled disabled…..only to turn around and have to file for disability
What no one tells you is just when you admit to yourself you are disabled someone tells you you aren’t
What no one tells you is what you think you can do and what you can actually do….don’t always meet up

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I constantly feel let down that someone didn’t tell me about theses things. The more I think about these things the more I realize why.
Because really these are personal lessons we all have to go through individually.  These are things  we have to work out ourselves.

Someone can tell us about them but it won’t sink in. They aren’t lessons you can avoid.  As much as we wish we could.

I don’t think people realize that people in chronic pain go through a cycle similar to the grieving cycle. The only thing is we don’t necessarily all go through the same cycle or in the same order even.

Where as in the grief cycle the very fact that you are still going through the phases typically indicates that you are not ready to move on, I don’t necessarily see this as true when dealing with chronic illness. There are so many different aspects to chronic illness. Sometimes I will quickly cycle when something else that I can’t do pops up.  There is a level of acceptance that people with chronic illnesses can get to.  I think with chronic illnesses we have different levels of acceptance.

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I accept I have Fibromyalgia…….I don’t accept it will limit me.

I accept I have Chronic Fatigue……I don’t accept I won’t ever get enough sleep.

I accept I have Arthritis……I don’t accept it will stop me from hugging my daughter.

I accept I have OCD/ADD….I don’t accept I can’t use that to good use.

Anger isn’t around much anymore. It was around alot at the beginning… that quiet bubbling anger that you don’t even realize is anger.That why don’t they care anger. That they don’t understand what I deal with anger. It was a deep dark sneaky anger. It didn’t want to leave so I wasn’t allowed to realize it was anger. Once I did. It was like this big sigh of relief. Okay. This is the way it is. Not everyone is going to understand or be helpful. Once I realized it was anger it was conquered. Okay maybe not conquered but I did have more control over it.

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I don’t think I have ever gotten to bargaining. There wasn’t really anything to bargain with. How do you bargain when what you have is already threatening your way of life? I wouldn’t trade anything in my life in order to not be sick. I liked everything about my life even if I wasn’t aware of it at the time.  I guess for some this is where they might bargain with God or a higher power.  I think I asked that Higher power why a few thousand times. I don’t remember ever bargaining with that higher power. Mainly because when I really look at it, I do believe everything happens for a reason.

I definitely hit depression for quite awhile. It was again something that started so slowly and was so sneaky that it took me awhile to realize it. That it was even sneaking through my antidepressant. I guess it lured me into thinking I was protected. Then it was kinda like how? How did this happen? I didn’t question why I was depressed. It didn’t surprise me at all.

Acceptance. I think like I said that comes in at different levels. Its a work in progress. Sometimes its a daily task, sometimes hourly, even sometimes minute by minute. It just depends on what kind of day I am having.

Dr. Kubler Ross is who came up with the stages of grief. When I looked into more of her as a person, I understand the stages a bit more. They aren’t set up to be neat little categories that people will just go through automatically and be done. That sometimes people will go through two stages at the same time. Or that they will cycle through all of them in a day, in an hour.

They came out not too long ago with a more loose stages of grief.  They understand that not all of us are the same and that we will go through it in our own way and our own pace.

That couldn’t be more true of chronic illness cycling. Give the same exact illness with the same exact symptoms and severity to two people and they will go through these stages in their own way and completely different.

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Sometimes I feel that what people don’t tell you is the elephant in the room now a days. No one wants to talk about it. No one wants to admit that they think that too. Unless they are with others who have similar issues.  When there is no judgement of how you deal with things, there is large amounts of growth. I know this personally. It is my wish that eventually with bringing attention to chronic pain and chronic illness’s that can’t be seen that one day this will be so. Non-judgment and acceptance for everyone no matter what there journey is about.

The changed meaning of Summer Break.

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Remember when we counted down the days left of school? Summer vacation was coming! No school! YES!! YES!!! YES!!!

There was a certain glee on walking out of class that last day of school. Time to party! Time to RELAX! Time to have FUN!

Tear up the papers! Throw out the books! Drag the backpack behind you!

Hello sunscreen! Hello beach towels! Hello sun hats! Don’t forget the aloe!

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As a Floridian…it was all about how long we could stay at the beach and then when high summer hit it was how long could we stay in the mall.  It could never last long enough. It was always too soon to go back to school.

Now its more like the count down to when my daughter goes back to school starts. 86 days but who’s counting? ME! ME! ME!

Its not that I don’t enjoy spending time with her. I adore it. However I know I can only do so much a day and she is like the energizer bunny. She keeps going and going and going and going.  Plus she wakes up at the most ungodly of time called five forty five. She is normally in bed by eight pm but do you know how many things a child can go through in that amount of time? How quickly they recover and are ready for more? If I could bottle it……millions I tell ya millions!

In all seriousness I have it pretty much covered til July. She is going to the mountains with a friend this first week. Then we have two weeks for her to recover. Then three day Disney vacation. Then there is three weeks of time where we have nothing planned. Sigh. I am going to need at least a week to recover from Disney. She will probably need a day. If that!

Then there is the flurry of planning the ladybug birthday party….

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Then I am pretty sure the plethora of ladybugs that will be residual of our ladybug birthday extravaganza that she will be entertained outside.

Right now I am thinking the idea of buying 4500 ladybugs for fifteen bucks for her party is pretty genius…..I will let you know about that later. It may not be as genius as I think it will be. Bug boxes, tweezers, magnifying glasses, bug nets…..a handful of eight year olds…What could possibly go wrong with that? DON”T ANSWER THAT!

The approaching days of summer brings alot of worries for me. I want her to enjoy her summer vacation but also retain what she has learned this year. We do have some library classes planned. Its not the reading I am concerned about. We are avid readers. We constantly use our imagination. The truth? Its the math. Simple addition, subtraction ,fractions, multiplication.  I am pretty sure just saying those words makes my brain explode.

My medications are sometimes miraculous to help me get through the day. However there are plenty of times when they are not so much. In fact there are some days I am convinced someone switched them with sugar pills. Wait….no  I might get a tad bit of energy or pain relief from the sugar….so….nothingness pills.  Pills that delude you into thinking they are going to give you even a little bit of relief.

I am not worried about taking her places or spending money. I am worried about just keeping up with her energy.  There may have to be some movie marathons snuggles in a cocoon of blankets.I could watch her sleep or her fascination with a movie or listen to her little giggle for hours on end.

My view point on summer vacation has changed drastically of how it was twenty years ago.

I wouldn’t have it any other way.

So when the pain is high I will do my best to push it aside and put myself down to an eight year olds level. To see the world in wonder again. To just enjoy the moment. When the pain keeps tapping my shoulder to get my attention we will drowned it out in blanket pillow piles for movie marathons.

I prefer these kinds of summers to the ones twenty years ago.