Monthly Archives: March 2013

When does this grown-up thing happen?

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There are times that I just want to stomp my foot and say “I just want to be a grown-up.”  Grown ups are suppose to have left all their irrational fears in childhood. Grown ups are suppose to make decisions and go forward. Grown ups are suppose to always know what to do. Grown ups are suppose to be laid back and having fun, its the kids that do the work doncha know.

So something other than chronic pain issues have been creeping back in. The anxiety monster is appearing again.

At what age do we say we are grown? I suspect when our wonder of life is fading and we feel we have at the very least adequately satisfied our thirst for knowledge.Does that really ever happen? Im not sure.

I  have alot of issues with anxiety. I just want to feel confident and sure about my decisions like I see others appear to be. I think that is the key word, appear. I want to stop feeling like at any minute some authority figure is going to lecture me on the things I am doing wrong. Sometimes its a parental figure other times its some kind of law enforcement.

I have gotten pretty good at hiding them and just not voicing my fears. Some of that actually came from voicing them and getting told I was being ridiculous. Well yes , they are thats the whole irrational fear part of OCD. Its not like I don’t know I am way over thinking things. I found if I just let them bounce around in my head then people didn’t look at me like I was crazy. They wouldn’t be able to blow off my fears with a shrug if I never said them.  I have gotten good at hiding behind my sarcasm as well. Normally when I go over the line with my sarcasm it is typically because its hit on a big anxiety issue.

When I was growing up it wasn’t called anxiety. We are a family of “worriers” I was told. When does worry move over to anxiety. For me? Always. It took years on medication and in therapy to get to the point I am today. Sometimes I can overcome my anxiety and talk with others and try and develop friendships. There are other times though that I just can’t seem to start a conversation with others. Then when I am safe back in my car I start thinking why couldn’t I just relax and talk with them. Once I get to know you though, you can’t shut me up. Well I guess you could try.

This is the one area I can safely say having a kid has been both helpful and dreadful at the same time. Its been helpful as I have enjoyed talking about parenting and kids in general with other parents. Its been dreadful because it also puts me in social situations that I would typically avoid. Playdates can be especially hard for me in this area.  Its also been dreadful for anxiety wise because as a parent you are always wondering if you are doing the right thing. Its not like parenting has a manuel or anything. There is also so many varying opinions about every aspect. When my ocd was bad I had no ability to discern my decisions at all.  I still get that way just not as much nor as severe.

By the time I actually reached the point that I could admit I needed therapy it was bad. Then just as I was starting to feel like I was getting somewhere I started getting sick. I can’t tell you how many times I stayed up late researching my symptoms. I struggled to figure out what was going on.. It was only made worse by most of my issues being invisible illnesses . Not only did I have to deal with doctors who either didn’t accept Fibromyalgia or were convinced it was just my anxiety. I was lucky that my primary care doctor had known me for so long. She knew I knew my body well.  I would go in with lists and ideas and even some idea of a diagnosis. These were rarely less than two pages long.

But as I am sure you can understand the very fact that I was right something was wrong, only made things worse.

I think the biggest thing I hate about anxiety is it leaves me feeling like I am still a kid. I am not saying I am old here.I mean in the you are still under the rule of someone else and having to abide by their rules type kid. I just want to feel like a grown-up.  Then the question is what does being a grown-up feel like? It must not be like not knowing what it feels like to be pregnant.  I had always wondered that and it all clicked into place once it happened to me. Maybe that is why I keep wondering this grown-up thing. Oh look there is that circular argument starting up again.

Anxiety eats away at you little bit by little bit. Just when you think you got one area snipped off and safe, it attacks another area. Once you get the paranoia under control it starts eating at your self esteem and on and on it goes. It can not only spiral on like this but it can also spiral very quickly.

Lets also not forget about how anxiety can just leave you unable to do anything. I often refer to it as procrastination but its not really that either. Its a form of denial in a way. It really can’t be defined except that I am so worried about something I just keep putting it off. Only addressing it when it can no longer be ignored. I hate this part too. I want to deal with it but I just can’t. Nor can I verbalize WHY I can’t.

There is also the things I do to burn off some of the anxiety without actually dealing with it. The checking things, the writing lists, the cleaning, and probably my most hated, biting my nails. Sometimes I notice right away, other times it kinda smacks me between the eyes. Once I recognize it though I usually deal with it.

I also don’t really like to psycho-analyze myself very much. I have seen what happens when you don’t do it at all,so alot of the times I force myself to do it. There is a funny thing that happens…..the more I don’t want to do it, the better I feel once I have done it. It wipes away the anxiety. It can and has restored my self esteem. It is a good thing to do. Its a healthy thing to do. Its something I know I HAVE to do to maintain my mental health.

So between parenting, chronic pain and illness, and anxiety. My brain rarely stops.

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Parenting is hard enough

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Remember before we had kids and we had it all figured out. We were going to be a certain kind of parent. We were never going to do the things we hated about childhood to our kids. We were never ever going to say some of the things our parents said to us. We had it all figured out. Then we brought home that little bundle of ….joy, and reality slapped us upside the head.

I also remember people told me that the first year was the hardest. I have news for them. THEY LIED. Sure the first year was hard. Sure I hated being patient while my daughter “explored ” her food. Sure going without sleep was hard. Its much harder to answer the million questions that occur to a two year old. Its much harder to keep up with the destruction of a three year old. Its harder to keep a four year old in clothes that fit. Each year it just gets a different kind of hard.

I think the biggest thing I have learned about parenting after getting sick is not to judge other parents. I may not agree with their choices. I don’t know the reasons behind their decisions and really its not my place to ask.It doesn’t mean you have to agree with their decision. As parents we beat ourselves up enough, we don’t need another parent adding to that.

There are things I swore I would never do and Chronic fatigue and Fibromyalgia say hahahahahaha nice try. I have found some things that I said I would not do but have done , have made my daughter stronger. Chronic pain has given me some blessings this way. Things that I thought would be good for my daughter I now see were just sheltering her and would eventually harm her. Well maybe not harm her but very much make her struggle.  Its hard to look at chronic pain and struggle as a blessing. For me in alot of ways it has been.

I have found myself reflecting more about everything I do. Even more than someone with anxiety and OCD normally would. I have to decide what I can do and what I can’t do almost daily and reconcile that with what my brain wants to get done. Parenting comes first. The other day my daughter wanted me to walk to pick her up from school so she could skate back. When it came time to go. I was really reluctant to follow through. There are times that I have to disappoint her and this just wasn’t the time. Besides exersize is good for me. Yes we took forever coming home but really there was no rush. Because I am not working I have more time to do little things like this with her daily. I know when I was working there was no way I would have been able to do this. Not just physically but also time wise, I just didn’t have it.

I never thought I would get used to the slower life of staying home. Yeah, I didn’t even get that all typed out before I was laughing. The days sometimes do drag, but mostly they fly by still. I remember thinking previously how great stay at home mom’s have it All that time!  All that sleep they must get. Remember that thing about reality? It slapped me another good one there. I thought staying home would give me more time to rest….so about that? What it has given me is more quality time with my family and really thats what matters.

I have also found that there is a desperate need for parents with chronic pain or illness or both to be able to talk with other parents about similar issues. I enjoy talking with other parents about parenting in general. What really leaves me satisfied sometimes though is knowing that there are others out there going through the same thing. Having simlar worries. Similar concerns. What we also sometimes forget is that our spouse or significant other has their own frustrations. Its not easy for them either.

Its hard to not let ourselves get pulled into the should have done’s. I should have gone outside with her. I should have taken her here. I should have had dinner ready. I should have gotten housework done. We spend so much time doing this. When we should be giving ourselves some credit for what we do accomplish.

On one of the support groups I am in, I started something called the daily to do list. Sometimes it was impossibly long and I just let my brain think we were going to get it all done. Sometimes the most I had accomplished was I got out of bed. After awhile it seemed like no one was really paying attention. I stopped. Then I found out how much it had helped others. Sometimes I wrote theses lists and never looked at them all day. Sometimes those lists were the only thing that kept me on track. For me it was a good reminder because I always had on my list drop off the kid pick up the kid to pace myself so I had enough left at the end of the day to spend with her.

When I am honest with myself chronic pain has also made my daughter a more sufficient person. Something that I am not sure I could have taught her. Sometimes the best way to learn that is to live it. I used to feel bad that she made herself breakfast at five. When in reality it was teaching her so many practical living skills that she would need.

I still find myself judging people, even other parents. Then I take a step back…okay well maybe not right away, but it does happen. I don’t know what they are going through. I don’t know what issues they are fighting.  Deep down every parent is deeply afraid they are going to mess up their child. I have really gone all over the place with this but its easier to not be as judging when you remember that previous sentence.

 

When the days are bad.

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So I knew it was coming. I pretty much planned it. I knew I was doing too much but my desire to BE was so overpowering. Sometimes this is the trade off I make.

Its hard to pace yourself with a family. There is always something that needs to be done. Sometimes there is also something that needs to be enjoyed. I knew going to the airshow was going to over exert myself. I knew it but I didn’t care. I stood in the line with my daughter to go into the cargo and cockpit area of a C-130. Some of my best memories were just little snatches ,standing in line, talking with my dad why he did dishes. I try not to overlook them. I hope she will remember the wonder of it. I hope she didn’t notice how hot and sweaty and tired I was.I hope she didn’t notice me shifting weight from foot to foot. For me the look of wonder when she saw the cockpit was enough. There was alot of walking. I am good with walking. I was also good with sitting. I tried to balance sitting and standing. Letting my husband take her around to see things as well. While I sat and tried to relax. Not so easy with planes taking off all around you.

So when it came to the next day. I got up, I functioned , I got her to school. I then allowed myself to go back to bed. It seems like a trivial thing. I remember thinking oh I would love to be able to go back to bed. I guess allowed is not the best word. I made myself go back to bed. I didn’t allow myself to do dishes or clean the cat boxes or put that load of towels in the wash.

I made my room dark and cool and allowed my body to just rest. Sleep was not the goal.. Sometimes for people with chronic illness sleep is not the answer. Rest was the goal. Rest was what my body so desperately needed.

Three hours later I got up much better than when I got up to get her to school. I picked up her uniform shirts, ran by the post office, the pet store and came home. Then I rested again. Those simple tasks depleted any energy I might have had. A total of forty five minutes in the day had passed.

Its hard on days like this not to fall into a miserable pile of depression. I know I walk that line daily but on days like this the edge seems especially slippery. It takes alot for me to remember that if I was my old self I would not have noticed the woodpecker nest or the momma crushing up the food. It would simply not have been noticed in my hurry to get to the next thing.

I knew I had to do it. I knew its what my body needed. A friend of mine is always telling me moving will make it feel better. My response is…..but it hurts! Its hard to push past that on days like this. This is why I love having a dog who is on a mission on every walk we take. I dont have a choice. He pulls me past the hurt and into where its okay.

Deep breath enjoy the breeze. Enjoy the ability to walk to the school and pick my daughter up. Enjoy the tenacity that she shows trying to master the art of skating.Enjoy the comment from the peanut gallery that we look like we are getting married when we hold hands. Just enjoy. Don’t focus on the pain, don’t think about the hip, don’t acknowledge the ache. Once I acknowledge one thing they all start clamoring for attention.

Sometimes even with all my sarcasm and dry humor, depression gets a hand hold in. Its much easier for it to get in when my body is screaming at me. It is so easy for me to just give into it. To just say yup I am worthless and a pile of trouble, to just loose interest in everything and ignore everyone. To not allow my distractions of reading or watching Dr. Who to pull me out of those depths.

Its so easy for me to get caught up in the everyday struggle of just functioning to ignore the     warning signs. When my dreams start taking on a realistic edge, when I can’t meditate no matter how hard I try, when reading doesn’t interest me and I move from one thing to the next desperately hoping it will help.These are all red flags for me. I know my mental state is okay when my dreams are scifi and very unrealistic. I have always been accused of living in a fantasy world, its okay they all know me there.

It took me years of battling depression to find that the best defense against depression is to know yourself. To not be afraid to look at those feelings and explore why you have them. To not just accept them as true. To not remain in denial about something but to look at it head on. It took years of therapy for me to get to that point. I can’t say that I don’t squirm when I see the therapist. I do. I absolutely hate going each month. I know I have to though. I don’t want to be back to weekly visits. So I try to remember this is a narrow edge I walk and to just be aware of it. To just accept it as part of who I am.

There is such a bad image about mental health that sometimes we bury ourselves deeper in an effort to be normal. When in reality all this does is make the problem worse. When you add into this chronic illness and chronic pain it can be a disaster waiting to happen.Once I started looking at my depression as just an aspect of health and not an illness, I started making progress. It doesn’t have to mean your mentally ill, this is just what you have to do to be mentally healthy.

I always related to grumpy bear from the care bears. Some people are just happy being grumpy. It always made sense to me. I am not a happy cheery peppy person. Once I accepted that and found ways to balance between extreme doom and gloom and extreme sunshine and happiness and flowers. I found myself.

I wish I could say I don’t loose myself. I wish I could say once I found myself I was on to different problems. I can’t say that. Its a continual process. One that during really bad days I find very very very frustrating. Its hard for me to say….Its Okay…Its okay to be frustrated. Its okay for it to be a process. Its all just okay. It is what it is.

Am I in pain?

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     This was asked by my primary care physician after the first eighteen months of parenthood. It  was not the reason for my visit but she said you look different is everything okay. I said sure you know just new parent stuff. She says…eighteen months later is not new parent stuff. Tell me more. Are you in pain daily? What is going on? Now let me say I had this doctor for several years prior to even getting pregnant. In fact she is the one who referred me to infertility specialist and told me not to give up. Pretty safe to say she knew me pretty well. 

My answer was no. not really. I mean..what kind of pain are we talking about? I am not in the same pain I was in labor. That I can’t get comfortable no matter what I do everything just hurts pain. I wasn’t in the pain after delivery when they had to massage my uterus( read hot stabby knife pain). Nope not having any of that. She said well lets start with sleep, whats your sleep pattern like?  Um, I wake up pretty much every hour and half. Not because the baby is awake I just wake up I don’t know why. So she says muscle wise how are you feeling? oh they ache and pull easily. Energy? zilch. Thus began my journey. This was the first time I had thought maybe there was something else going on. My therapist had been the one to suggest I go in for an actual physical and not just a routine check up. It was a really good idea.

I saw a rhuematologist and eventuallly several pain management doctors and even a gastroenteroligist. All helping me define the different areas of pain. The joint pain and the bone pain , the actual makes me clinch my jaw because it hurts pain and the grumpy gut pain of IBS. It was all new territory to me. I spent hours reading medical articles.

I started journalling my pain issues and my rhuematologist whom I love suggested some alternative methods.I advocate that people explore these. I found for the most part they are great for temporary relief. However the chronic fatigue that I find myself in from functioning with high levels of pain makes them very tiring. Chiropractic adjustment , accupuncture, Herbal supplements all helped me,for a bit. I found I no longer enjoyed going to them as it was just one more thing in my daily routine to function through.

                 I tried massage and again that worked well. The problem with massage is finding the right therapist. Not only one whom you like but who understands your conditions. Unfortunately the one I went to that I absolutely adored retired. She would never let me tell her what hurt. She told me my body would tell me and she would go from there. I can say it never once failed her. Not only that she knew with in minutes if something wasn’t working and would switch. I began to look forward to my twenty minutes on friday. It took some trial and error but I could only stand about twenty minutes before it was too much. More trial and error stuff. She remarked one time about three months into seeing her that she knew I had the truest form of fibromyalgia because where my muscles needed attention varied every single time she worked on me. She was also the one to teach me the value of meditation. Even while doiing things like taking a shower or even doing the dishes.  We would do the two together sometimes and man after that I felt like I could take on the world.

   There are so many types of pain. There is the dull achey muscle pain. Sensitive to the touch skin pain, Nerve pain, of white hot daggers moving through you, areas of numbness,tingly, and a bad sunburn feeling. A pulled muscle feeling of pain, stiff joints that don’t want to move at all pain. The wibbly wobbly jelly not feeling steady on your feet pain.  None of these are easy to describe to someone else let alone a doctor. This is where I would spend hours researching what the pain is called in the medical field and how to accurately describe it to a doctor. 

      I really wasn’t a pop a pill and move on kind of person. I tried all kinds of variations of the above stuff. It took me two years to reach the point that i started asking for medications. It took another two years before I asked for some pain medication of some kind. I remember going to that same primary care doctor and I remember her saying this isn’t working. I said I just need something to let me not feel for a bit. I can’t say the choices in medications was the greatest. It was however my choice and the ones I asked for and we discussed why i wanted that particular medication. It did give me about a month of just not feeling. I was able to function and felt better. Then it stopped working like that and it did give my asthma a break and my joints a cushion so we continued. We continued for alot longer than we had anticipated and this is the first time my allergies have been able to flare my asthma in a long long time.

So when people ask how my pain is, I have gotten pretty adept at lumping it. I try not to analyze any one area too much and give it attention. Once I give it attention its harder to just push on. I don’t often think about what particularly  is bothering me that day. If I give it attention it whines. It starts saying hey hey hey you I am here. 

We just learn to push past that and focus on what needs to be done. Get up, get dressed,take meds, pack lunchbox for kid, get kid to school. I have gotten pretty good at focusing on the RIGHT THIS VERY MINUTE aspect of life.

I spend alot of time thinking the details of the day. Okay I am leaving to take kid to school, lunchbox, check, car keys, check , purse, check, homework, check. am I coming right back or will I be home in time for meds. If not then I need to toss meds in my purse so i can take them. 

I also find myself paying more attention to planned ahead events. For instance we are going to an air show. I should have rested the afternoon at least and been very low key. Unfortunately I was not able to do that. Thus I know by Monday, I will be starting to flare. So I have to look at the rest of the week and see if I need to cancel anything and when I can schedule time to just be mellow. To sit outside reading while the kid plays with the dogs. 

Now when people ask my if I am in pain Its more like, yes but today is a good day. Sometimes it is Yes and today is a really bad day.  Short and sweet because the truth is, very few people want to hear it all. Then that brings on a whole other set of problems. 

 I don’t want the attention.. Sometimes its better to just avoid the subject with me. I am here I am functioning I am surviving. Lets not talk about it and just push on. Just let me keep my illusion of functioning. If not for me then for my daughter. Most of the time that is when I am pushing myself the most anyway.I don’t want her to feel like she is missing out on stuff because her mommy is sick. If she does miss out on stuff it should be because she lost the privileged either through poor choices for behavior or grade issues. Let her be like any other kid in this aspect. 

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 This is the mom image I want her to have. Even though here she is just a few weeks old and I still had weight to loose but my level of pain was still fairly within normal for a new parent. I want her to look back and see a mom who was involved. Who was always there for her, doing things with her.  Being there for her , not stuck in bed. Some days when the pain is bad it kills me that she can see it.  

For the record I did not give up.

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I have heard so many things since I decided to file for SSDI…..Social Security Disability Insurance. I have heard ….no way! I don’t see why you can’t work? , So you are just giving up?, Isn’t that for old people? Why? Whats wrong with you? , Lots of people work with illnesses.

First of all, It was a very hard decision for me. I fought it probably far longer than I should have. I had already struggled with the feeling that I was giving up. Thank you so much for verbalizing my fears. They were not bad enough inside my head, I really needed someone else to say it to me. Because that is exactly how it felt daily when I was working. An eternal struggle of my brain saying don’t give in and my body saying..I quit! I fought that feeling daily.  It was hard to say okay I hear you. We can’t keep doing this. To decide that maybe there was a reason I felt worse and worse each day, each month, each year.

It was alot of soul searching and saying not only is doing this to myself not fair to me, but its not fair to my daughter. Its not fair that her mom is too tired to play with her or listen to her stories after school. It was time to set aside my desire to remain productive and successful at something and focus on this wonderful little person I was lucky enough to call my daughter. This was the highest calling anyone could reach, being a parent.

So those people who were shocked or who couldn’t see why I had to do this. They not only  don’t matter, they missed out. They missed out seeing a more relaxed mommy interacting with this wonderful child. They missed seeing this child flourish on a mommy who although isn’t out of pain, is able to be more.

As if the comments above weren’t bad enough, I also found the ones who said ” Good for you!”. Now I know they mean well and I know they think they are being supportive.  But I still have some guilt about even filing. I feel like I am taking advantage of the system. Its hard for me to let go and just do what my body needs. Its hard for me to accept that there are programs to help. I feel like I should be doing it myself. I feel like I just gave up and people are congratulating me for it.

I don’t really know what the right response is. I still have a long ways  to go before I am at acceptance of this. There are days that I feel good and I think….I totally could work a full day. Later that day reality sets in and I am out of steam by four pm. Dinner and homework and bedtime now seem like huge tasks. There are those days that I feel crappy and am glad I don’t have a full time job other than being a parent. I am trying to use those good days more and more to be as fully involved with my daughter as I can.

People see my complaining as just that complaining. What they don’t see is once I have verbalized it. I usually get up and force myself to do exactly what I was just asking for Minions to do. When it comes to pacing myself and not over doing it. I am my own worst enemy. Once I verbalize it, its enough to make me feel bad for it so I get up and do it. Even when I should just listen to my body and not do it. Not do the dishes and not do the laundry and especially not vacuum. I do them and pay for them and beat myself up for doing to much. Its an invisible fight that people just chalk up that I am lazy or I am “milking it”

You would think that if I was not working that I would have so much more time and energy to invest in house cleaning or running around. Fibromyalgia doesn’t know the difference of employment verses unemployment….it flares either way. It goes to war against me each and every day. People say oh well at least its not fatal. Did these people know that the number on killer of people with Fibro is suicide? They say well at least its not progressive. No it technically isn’t but you don’t get younger so other more standard things that happen as you age start to happen. Which makes the symptoms of Fibro seem worse. So its a constant struggle to find the right meds to take the edge off, to find where my limitations, to just survive.

So for the record I have not given up and I did not give up when I filed and I won’t be giving up anytime soon either.

It is all just so awesome!

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So recently in my reminiscing moments(read driving) I wondered how some of my friends know with usually one look how I am feeling. So me being me, I asked them via text of course. Not while driving though. These are people who know me better than almost anyone else. Some of these friends go back to middle school.  I love each of them for there own special ways. Some I see multiple times a week, some I see once a week, some even less than that.They all just know.

I got some unexpected answers, like I am good at reading body language. How can I be showing it in my body language if this is an invisible illness.  Some told me things I knew, like the more pain I am in the more I grit my teeth. However my favorite answer was…Simply put..Because I am that awesome. This is why we are friends! I laughed so hard. I am sure there were many strange looks given to me in Goodwill that day but I didn’t notice or even care. I had awesome friends. It hasn’t always been that way.

I realized that it doesn’t matter how they know…they just know. That for some people I only have an :”invisible illness” because that’s the way they choose to see it. I don’t have to see it that way. I don’t have to think of it that way, my friends didn’t think it was invisible. Because really its not invisible.

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So another day and I am talking with another suffer who also is my friend. Even though we have never met, we seem to just get what the other is saying. I am sitting here needing to keep laundry going, needing to organize the pantry, needing to bring in and put away things that are on the porch. Its all just so awesome that I get to sit here wanting to do this stuff. My brain is telling me to do these things. My body however is saying no way. Stubborn as I am, I do get up and do some. A little at a time, some people call it pacing. Today it is enough that every commercial I get up and do something. Move laundry along, bring a box in, empty a little more of the pantry. This is how it gets done some days.

It took me along time to realize that I am not lazy. I am not procrastinating. It is very hard to push past what my body is saying some days. I am better at it some days. I suck at it other days. Those days when I suck at it. I rely on my family, my friends and also my sarcasm. I have learned there is a difference between listening to your body and that of being lazy or procrastinating. I fully admit there are times that I DO procrastinate.  There are days that I tell myself I am procrastinating , that when its suddenly six pm and I have not done what my brain had planned for the day, that it was really I was listening to my body. Even if I wasn’t fully aware of listening. Those days I try not to beat myself up about it. Those days I try to just accept. Sometimes without even knowing it a friend will text me or message me or even post a picture that is just right.

Its all so awesome that we who suffer with chronic illness and chronic pain, get to fight this brain body connection. This brain that wants so desperately to do and get things accomplished and this body that can not handle it. Its so awesome that we get to deal with nonbelievers of our conditions. Its even more awesome that we get to deal with non-believing doctors as well! Isn’t that just awesome. Aren’t we just so lucky!

Its all so awesome that on the days that the pain is manageable and the joints are at the very least moving, that a different symptom shows up. My favorite two to show up during these times is the nerve pain feelings, and suddenly being uncoordinated.  These days I walk around holding the left side of my face. The skin tingly soda bubble popping feeling is abated a bit by holding it.  Dropping boxes or keys or phone over and over is also fun. Because who doesn’t like trying to open the front door and dropping the keys, multiple times.

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So in the end its just so awesome. Its so awesome that through chronic illness I have found better more understanding friends than I had before.I found out who were my true friends. I found awesome friends!

I found the cure!

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Now that I have your attention. This is probably my biggest pet peeve. I know they mean well. I do I really do. For some people this cure , this idea, will work. Fibromyalgia is a process of elimination diagnosis. Having put myself through the exhaustive process of elimination I understand the desire to just jump to a diagnosis. I also understand that feeling that the diagnosis they are looking at is wrong but not really being able to communicate that its wrong. There is no words that really describes it.

I think this is why people with chronic illnesses know so much about so many different medical issues. We have looked at them, studied them, tried to fit the puzzle piece of our symptoms with the puzzle piece of the Diagnosis.

When my doctor first suggested it may be Fibromyalgia….I was like nope not accepting that. I literally told her I believed it to be a waste basket diagnosis. Now I really loved that doctor and had been with her for over five years at that point. I was frustrated that I felt I wasn’t communicating effectively with her. Even though she had taken like eighteen vials of blood by this time,she listened. She referred me to a rheumatologist and a gastroenterologist and said we would check with an endocrinologist last.  I kept a food journal along with what symptoms came after eating such as gas, cramps,and heartburn for six weeks. The gastroenterologist took at least eight vials of blood. She was also fighting with my insurance company to prove that a colonoscopy was medically needed and was not routine. We did not win that fight but we did get around some of it by checking stools. We arrived at Irritable bowel syndrome aggravated by a corn intolerance. Can I just say here do you know how many foods have corn in them? Practically everything. So prescribed Bentyl, an antispasmatic, and to take two benedryls at night. I will say it was not until the last three years I have gotten serious about reading labels and trying to exclude as much corn products as possible.

On to the Rheumatologist I went. I have to say my rheumatologist was beyond wonderful. He truely listened and he also said he suspected a bit more than Fibromyalgia. More bloodwork, more waiting. We found my vitamin D level was super low. Started prescription strength for that. Levels were very slow to increase but they did start increasing. Finally a year later they were within normal levels…..unfortunately three months off the script and they were back where we started. This was with me taking over the RDA amount daily. I was taking 1,000 iu’s a day. So we then started exploring some of my back issues and how much it bothered me. He said the muscle issues were deffinetely Fibro. For which he prescribed Soma. The bone pain I felt though puzzled him. He ordered a full spine MRI. My back only tolerates being laid on for about a minute maybe two minutes at a time most days. Fourty five minutes was killer. I did not have to wait long for a call to come back in. He said let me start out by saying I am so sorry. We should have done this when you first came in. I had issues at every section of my back. Thoracic issues in your twenties not related to an injury are rare. Guess who is rare? I had been in car accidents but had xrays that showed no damage. Let alone Hypertrophy. Four hernatied discs, some bulging discs a loss of the curve of my neck and on and on. I got Lortab after that.

I can’t tell you how many people heard arthritis, oh do this its what helped me. I was barely 26. Or how many people heard arthritis and basically told me to quit complaining. It was just part of getting older. Excuse me since when was 26 considered old? Or getting old? I didn’t consider myself old. I didn’t consider some of my coworkers who were in their fourties or fifties to be old! How could they just brush it off?  I was angry. I was angry at everyone who didn’t show the least bit of concern or sympathy. I was even more angry with people who said they coped with more pain daily than I. Excuse me I delivered an almost nine pound baby naturally with no epidural. I understand pain. I understand high pain. My pain levels that I can deal with are much higher than what most people have. Why do I say that? I totally told my midwife that her massaging my stomach after the baby was born hurt more than giving birth. She looked at me and was laughing til she saw my face. She was like oh you are serious. Okay.

At each step someone had a cure. Someone had an idea I had to try! It drove me nuts! I treated everything homeopathically for almost eighteen months before getting on scripts. It horrifys me sometimes how many pills I take. I am always searching but I also know my body and I know what works.

When I was on almost all scripts I was able to work full time, commute 45 minutes, play with the kid and also do housework. Slowly they started being less and less effective. I had a great support network and I went off all meds. It lasted two months before I was like I can’t function like this.

I am not back on everything I was and now there is a happy mix of homeopathic stuff mixed in. I couldn’t handle working full time but what I am doing is satisfying to me.

So whats the cure? Listen to your body! Do what feels right for you. Don’t be afraid to change things up to see if something works better. Most importantly…..let those comments of have you tried this? Roll right off you!  I find an answer of Interesting I will have to speak with my doctor about that works pretty well.

At the end of the day, you have to be comfortable with what you are doing, Not them.

You are my best friend……I say to every friend I have….

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So really has anyone else noticed that there are some people who you never have deep meaningful conversations…..I swear people really do that….and yet ….they are closer to you than anyone else? I am the kind of friend that when I am friends with you. Its an all or nothing kind of thing. Hey my brain is scattered so don’t leave me to do all the connecting. My connecting to people part of my brain malfunctions at least daily if not hourly. If you will drop everything and help me when I need it……buddy say the word and I will do likewise.

I really have about five maybe six people who are close enough friends that they say the word….I am running to them. Two of them don’t even have to SAY the word….I just know. Just like they just KNOW when I need it. Why am I telling you this? Because when you have a chronic illness and you have a kid…..these kind of friends are essential.

There was a time…back when I didn’t want to get better because I had learned what my limitations are….that I didn’t have friends that would do this. Now I know I can’t survive without friends that are willing to help. Not only willing to help but offer to help. They can tell with just one look that I need a break from being Mommy so I can just collapse and be goo in bed, and sometimes we need someone to tell us to do this. Sometimes we are so wrapped up in just surviving we forget to take care of ourselves.

Now I know that life is pesky and I can’t always stop what I am doing and be there. There is also the fact that some of my friends don’t live close by. It doesn’t mean that my thoughts aren’t with them. It doesn’t mean my phone isn’t in my hand til I know they are safe. Its also is true that life happened to them too and they couldn’t always run. I did however find that some of the people I thought of as just friends, did help. Not only did they help but they were happy to. It might sound odd but this really surprised me.

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I think it took me getting sick to realize how important friendship is. I wasn’t lonely. I had my husband and my immediate family and then my daughter. It took me years to realize I needed people outside that circle. It took me years to realize some people that were in that circle didn’t need to be there. I changed. It wasn’t easy and I wasn’t always sure I was doing the right thing.It sounds silly but it took me getting sick to realize that my family wasn’t the best support for that. They saw me everyday. They knew what I was dealing with. What I needed was to vent to a nonjudgemental person. I needed to blow off steam and laugh and be silly. Sometimes you can’t do this with family. We are just too committed to each other.

I found that I needed the socialization for much different reasons than I thought. Now when I make a friend I really do mean it that they are my best friend.

Remember growing up we used to say…your my best best best friend. It seems silly now.

Today in church they talked about how we give back and we give forward. We give to give back and sometimes we even give forward. Never knowing how that kind word,smile or help at the right time makes such a difference. So do my friends really have an order of most important, yeah I guess they do, but it wouldn’t be the first thought in my head if someone called asking for help. What matters is what I have to give at that exact moment that they need help.

So really as long as you do your BEST for each friend you have…..they really are your best friend. Its such a silly thing to put value on one friend over another. Its always bothered me and I have never known how to deal with it. Now I do. All my friends are my best friends because I do my best by each friend I have. Regardless of what they do back.

That last part is the harder part of this. To be a friend to your own ideal and not judge what kind of friend they are back.

Sometimes I still have to work on that one.

I am sure I am forgetting something

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There is a study that says pregnancy causes a seven percent  decrease in memory ….well …..um what was I saying.

So now add to that Fibromyalgia and the brain fogginess that comes with that……also add to it that I have had to be on Benzodiazepines which by themselves cause memory issues.

Oh yes and it is a well known fact that sleep deprivation causes a loss in cognitive abilities. This includes memory.

It really is no wonder that I walk around most days with only the ability to remember what I am doing right that moment.

Let me also say….I do not accept this. There is no acceptance about this. It makes me feel very stupid. I don’t feel the person who graduated with a 3.9 grade point average. That remaining tenth of a point remained elusive.

So yes what was I saying. Hmmm I don’t remember.

I hate when I say things wrong or reverse things or forget things. I feel unorganized…which I am not. I feel like a ditz….okay well that one might just fit.

I have blurted out that I am my brother in laws brother in law. Nope you read that right. I have told someone my child is over three years younger than she actually is. I have combined two words to make a whole new word.

It all makes much more sense in my head. I know what I want to say it just doesn’t come out the right way. And really when you only get two hours of sleep at a time, who can blame you.

However, I also have a good sense of humor. I find these things really really funny. It doesn’t mean I don’t work on it. It doesn’t mean I am the ditsy crazy person I come off as. It doesn’t mean I don’t have self esteem issues with it.

What it does mean is , I have to prepare the night ahead of time for the morning. It means that I spend alot of time checking and rechecking that I have things I need. Like heart meds while I am out.

Sure some people would say loose the benzodiazepines. These are the times that I grit my teeth and just nod and smile. I have struggled with anxiety for a very long time. Its just a fact of life for me now. I need my meds. Sometimes they don’t cover it all. But they are not going anywhere. I have been there and done that and its just not worth it. I would rather have short term memory issues.

For some people they can take a sleeping pill and get some sleep. My body takes sleeping pills as a personal challenge. To see just how long it can fight it. It doesn’t matter if I smother myself in soothing scents and dark cold room and meditation music. My body will find some problem with it all. I took them for years because it at least allowed me to get four to five hours of sleep. Some sleep is better than no sleep when you sleep thirty minutes at a time.

What chronic illness people want is to feel normal. To feel accepted for who they are. What people with chronic illnesses want is more than just five more minutes in bed. We want actual restorative sleep. When we get good sleep everything else is just a little bit less. A little bit more manageable.

And well as to the newest fact that pregnancy can reduce your memory by seven percent……two words come to mind. NO REGRETS.

Chocolate, Caffeine and just a tiny bit of Maniacal Laughing

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Some days are easier than others. Its just a fact of life for me. So when a day comes that its especially tough, I fall back on my three. The three things that work….Chocolate, Caffeine and sometimes Maniacal laughing. Sometimes it gets the job done. I make it through the day.

Its hard to remember when you are trying to deal with a buzy schedule of being a Mommy, a wife, work, and chronic pain.  Its hard to remember to stop and just be. To decide….yes I am hurting but I can stop and enjoy this sunset. I can enjoy a butterfly on a flower. I can enjoy this chocolate bar. YES I CAN!

Its so easy to say I can’t. I can’t do this. I can’t face another day of chronic pain. I can’t face another day of barely being human.  So when you find something that works. Hold on to it with all your might. Think of it as a group on Web MD use to say…as your emergency tool box.

So I don’t have the best memory….sometimes this can be a good thing. When I rediscover something that helps me make it through the day. I do write them down, remembering to check the list however, another story.

I know I know I know, there is a sugar crash, a caffeine crash to look forward to. All I can say to that is, I do what I have to. Also hopefully that crash comes when I can just go to sleep.  For me though, these are okay. In moderation everything is really okay. Okay well maybe not crack or heroin or whatever, but you know what I mean. It all seems to balance out, The days that I am good and drink only water and eat healthy and walk the dogs balance out the days that I need what I need to get through.

Then there are the days where I just laugh at everything. I laugh at myself, I laugh at little things that really probably are only a smile. These are also the days that just breeze by even though they are typically not the best days. Sleep deprived high pain days are hard. Laughing is easy. Its just finding the little things to laugh at. The squirrels who tempt the dogs to catch them. The fact that my daughter was fascinated by the dogs pee or poo steaming. Hey, never said I was mature…Poop is still funny. Farts are hysterical.  Sometimes its a text at the right moment that leaves me in the grocery line laughing my butt off.

I am part irish so also part stubborn. This weekend I tried to go to bed early and stay in bed late. I did it. I didn’t feel any more rested. So up I get. Later there will be time for laying in bed and cuddling. When I want to do something I do it. Might not be the best idea for me, but I do it.

This is not to say I don’t have my pity parties. The people who know me can attest to this. I know it.  I have thrown some major pity parties. Ultimately though this is not who I am. I enjoy being Eeyore. But if you notice being grumpy or sarcastic really doesn’t stop Eeyore from doing. So sometimes I bundle the Eeyore around me and just do.

So in my tool box of ways to distract myself is

1. Chocolate

2. Caffeine…Soda or Coffee

3. Laughing….

4. Get my Grump on and just do

5.  Escape into a book

6. Take a walk…(the hardest part of this one is getting started)

7. Lunch out with a friend

8. Google relaxing images

9. Meditation and a nice cup of tea

10. A warm shower

A toolbox can do much to help get to the end of the day. For me most of the time its chocolate, caffiene and a little maniacal laughing. Its not perfect but it works. What’s in your toolbox?