Monthly Archives: September 2013

Its not about distance….

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Today Fibro won.
I only walked half a mile total all day. That much felt like ten miles though. My hips and lower back were burning with every step.

If I had listened to my body I would have not gotten out of bed.

It started off with taking my meds. My brain was awake now but my body didn’t want to play along. So we skipped church. I stayed in bed.

By eleven my body was finally getting the picture that the brain was not going to allow more sleep.

Took my eleven thirty am meds and pondered lunch.

Finally get my act in gear and we go off to a park playdate we had planned.  It started off pretty amazing with a visitor that came pretty close to me.

(raccoon picture) (I had a cute picture of the raccoon…but I don’t know where it went. thank you fibro fog)

Just walking from the car to the picnic bench was alot. The kid was off and playing. My only thought was play hard so you are tired.

After an hour of the kids playing and us chatting. We took a walk.

I constantly felt out of breath but stopping for a few deep breathes calmed it down so I knew it was not an asthma attack. It was hot, I was sweating buckets.  I think a few minutes in I started gritting my teeth when I wasn’t talking with my friend.  The whole time I had to keep reminding myself. Its not about how far you walk, how many calories you burn. Its about not giving in completely.

We got back to the playground.

It was time to go. I had had enough.  The kid was hot and sweaty and even if she wouldn’t admit it, tired.

Fibromyalgia may slowly take things from me but being a good parent won’t be one of those. I refuse. No matter how much I have to push or how much I have to grit my teeth to get the job done. An hour and half at the park with the kid is better quality time than a zillion seconds and minutes when she is watching tv all day. If that means I am not able to do anything else for the day so be it.

I had to keep telling myself that I am not supermom. Its not about how far I walk each day. OVER AND OVER AND OVER. To not feel guilty for not spending ever second of the day interacting and talking to and entertaining the kid.  Quality over quantity . I had been walking every other day. Thinking it allowed me time to recover. It may have been necessary in the beginning , now its not so much. I am finding it is easier to keep pushing myself to walk further if I am walking daily. Even if on those really bad days, like today, I only walk twenty minutes.

I know many of you struggle with activity. To get up and get going. Its not about distance. Its about the effort. Its about starting with even just one minute. It is not easy. I am not going to lie. It hurts. There will be days when even thirty seconds is too much. Sometimes just repeating a positive or even just a statement. I will not give in. Even if you don’t fully believe it right away. Keep telling yourself it. Repetition works.  Even if its to say tomorrow I will be active just a minute longer than today. I promise you it works. Its a fight I know.

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Sometimes checking helps.

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I made several wrong decisions in how I handled it but I severed ties with my mother and my youngest sister a little over a year ago. It was hard but I had had enough. Sometimes a quick cut off is the best route though. It is so much harder with family though. This is where you are suppose to not be judged, to be free to be WHO you are and HOW you are. It had been a long long long time since I had felt that way with these two members.

On the way to this meeting of all the family, My  hands were clammy and shaky. My stomach was in knots and I was certain I would puke any second.I did not want to hear what had been going on and yet I still did want to hear. It’s easier to tell yourself you don’t care anymore that , that part had been fried many years before. Its another when you are confronted with it. I had taken my ativan before venturing out. I knew I was going to need it. I was functioning. I was able to go get my daughter early from school. I was able to have decent conversations with others. Even though I got a little out of breath a few times. I was talking too fast , I couldn’t stop though. I couldn’t even think about what we where we were going.

When I had gotten the plans, my first thought was to say no. That however was not fair for my daughter. They are still her family. I wasn’t leaving her alone with them. I would be there. I felt I was able to control myself (with medication of course) that was not really what I was worried about. It was how to explain the situation to my daughter if and when it came up. I do know her. It will come up. Why I expected it to come up right away  I am not sure.  Its almost like she knew I needed the recovery time.

The questions still haven’t happened but the whole event re-affirmed my decision for the split. The same issues are still there. its saddening and disheartening at the same time. I understand some people have no family left due to death. I am not sure which is worse. They both pretty much suck balls.

One day it will be up to my daughter whether she wants to attempt a relationship. I want to protect her from this kind of heart pain. I know I can’t but I want to.

The fact that I even allowed the meeting to take place shows me how far I have come in therapy and mental health.

Guest Post of Sorts: Mattie’s Got Stuff to Get Out

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Earlier this morning I posted on the Chronically Sick Facebook Page about my rough night going into this morning. Let me give some back story before I explain:

 

In the end of August, I had an episode of fatigue, nausea, diarrhea and pain in the upper torso. After being a moron and Googling my symptoms, I was convinced that I was having a heart attack. The Huzz spent hours trying to calm me down (to no avail) before finally driving me to the ER where they did an EKG and determined I was merely having an anxiety attack and sent me home less than two hours later. I decided it was time to quit smoking and lay off the caffeine and bad foods before it WAS a heart attack. I had another mild episode at Walmart

 

A few weeks after that, I went to Urgent Care for a horrible sinus infection, which also triggered anxiety symptoms. They prescribed Amoxicillin, which made me so nauseous that I was not eating, and missed almost a full week of work. I decided to start seeing a new Primary Care Physician at this time, who told me to stick with the amoxicillin, and gave me Valium, Ativan and Zofran for my anxiety symptoms. He gave me orders to get blood work done at their lab, which I finally di on the 16th.

 

The Amoxicillin also landed me in the ER, due to the nausea being so severe. A script for Phenergan and I was sent home, and told that my sinuses looked fine and I could stop the Amoxicillin.

 

The following Monday, the infection came back with a vengeance, and I went to see my new PCP. I was given Keflex for the infection, which I completed with no problems. After completing that round of antibiotics, I was left with a HORRIFIC yeast infection (I am still dealing with this, and will be telling the doc about it) and nausea every morning. I have been alternating sleep medications by night. Most nights I take Benadryl, but every once in a while I will take a 2mg Valium, or 1mg Melatonin, or a Tylenol PM. I have yet to touch the Ativan, because I was reading online that it had caused a heart attack, and that is the one thing I am terrified of.

 

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Cut to yesterday. My uncle who lives approximately 1,000 miles away from me was diagnosed with Pancreatic Cancer last year. We knew it was only a matter of time. Since we are all so far away, we keep updated through the magical Facebook. His daughter had posted that the doctor had told them that his body is no longer absorbing nutrition from food and anything he eats from this point on will purely be for his own pleasure. This hit me incredibly hard. I was not especially close to this uncle due to the miles between us, but it hit like a ton of bricks. I was crying for the first three hours of my work day, which left me feeling like crap on top of the assumed tendinitis that was flaring for a week.

 

So, by the end of the day yesterday, I was headed home with shoulder pain, headache, sore throat, and pressure under my jaw and a new symptom – heart palpitations. I have had some heart palpitations for as long as I can remember, but lately they are more noticeable.  I felt like crap all through the day into my drive home, and tried taking something new that my friend’s mother swears by, Country Life Stress Shield. I felt better for an hour or two, but on our grocery shopping trip, it started to hit again. We finished shopping, went home and ate dinner.

 

The night progressed and my symptoms went up and down. I was on the verge of taking Benadryl again for sleep, but some little voice in my head convinced me that I was going to die if I did that. I spent the night in and out of bed, pacing the small area between my dining room hutch and the fish tank. When I finally did fall into bed, it was for a few fitful hours of sleep.

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My mother helps with The Teenager and Little Miss on Thursdays and Fridays. When she came in our front door today, she took one look at me and made me sit down and talk to her. There is something about my mom that no matter how much we fight or pick at each other, she makes me feel better like nobody else. She explained to me that a lot of the heart conditions that I had always thought my family had were not as bad as it sounds. Her side of the family had NO heart conditions. She had a sister that had Rheumatic Heart, but that was from a fever when she was a baby. This same sister is married to the uncle discussed earlier and went on to prove the doctors wrong and have four beautiful children and live a very active life to this day. The heart conditions I had been under the impression that my Father and his mother had and still have were not as severe as they had made them sound. Those were the two that weighed heaviest in my mind.

 

I finally called my doctor’s office today (The Huzz told me to, and I hate to say it, but it did make me feel a little better) and asked if they had received the results of my test. I figured if I can get some sort of confirmation that I am not going to die today or tomorrow that I might do better with all of this. I was told that the nurse would call me back, which she did while I was writing this. My cholesterol looks fine, as do my red & white blood cell counts. I have a few things that I need to work on. My B12 was high, and there are a few other things that my doctor will discuss with me at my appointment on Monday. It felt good to hear that I shouldn’t drop dead before my next appointment.

 

But as most of us here know, there is always that evil little voice in the back of our head that screams “IT’S YOUR HEART!” and makes the anxiety climb again. As I type this, I can feel my jaw tightening and my stomach gurgle. Yes, it is lunch time, but still. I have to keep telling myself that I am going to beat this. We will find a solution for my little aches and pains. We will beat the nausea and I will live to be 100 years old and beat all of my grandparents’ records (They all lived well into their 70’s and 80’s, and Grandma is still kicking). I just have to talk to myself and learn how to deal.

Sorry for the long post. Here is a potato.

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A sticker can’t possibly fit in there.

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Oh but it did. Never doubt the power of a toddler inhaling snot.

When the kid was around 18 months old….I got her these stickers. They were like one inch length and about the same height wise. I was standing right next to her….Talking on the phone but had my eyes on her. She ripped a sticker….Somehow it then got stuck in some snot that was dripping down(I didn’t think she would ever not have a runny nose) and before I could blink.

SSSSSSSSSSSNNNNNNNIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIIFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFFF

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These were not the specific ones we had. Very similar though.

She was about eighteen months here and Hubby and I tried to get it out with tweezzers….it was not working. The harder she cried the more she sniffed the higher the sticker went.

Off to the Emergency room

Primary complaint for todays visit……sticker up the nose.

Three sheets……swaddling her. Two nurses. the doctor with alligator clamps AND  suction.  The now bloody snot covered sticker was removed. The doctor asked if I wanted to save it. UM HELLS TO THE NO. Throw that crap away before I puke. ‘

Our animal stickers that cost a dollar…..now cost us one hundred and one dollars.

I came home and threw every last one of those stupid stickers out.

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Mama are we poor?

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Oh god oh god oh god okay breathe…I knew she would eventually get around to asking me this question.
We did have a dramatic change in our lifestyles moving in with my brother in law.

“Who said that?” I ask. I am hoping no one but it would help me figure out how exactly to answer that.

” No one , I just thought it.” She somewhat mumbles a reply.

Okay so I can do this. I got this. RIght? Okay

” Well money isn’t everything and we are rich in what matters. We are rich in family and friends who love and care about us. Some people don’t have that but they have money.”

I start out with.

” Like the gold king. He wanted lots of gold but had no one to share it with.” She pipes off.

“Yes exactly like that. We have a house to live in and a car to drive , food to eat and clothes to wear. That is much more than some people have. Then we also have family and friends. So really we have everything we need.”

At this point I don’t remember exactly what she said mainly because it was one of those things that was way way way out there. Something about unicorns and airplanes(we were passing by the airport) and how Daddy likes to take her fishing and a million other things that were on her mind.

I however kept thinking about this conversation. I hope I have conveyed to her that both money is no big deal and money is not everything, without her feeling like she is loosing something because we don’t have lots of money, in our everyday life.

We do a lot of activities that do not require money. However I have also noticed that she is a lot like me. A LOT a lot like me at that age. Okay for me it carried on for many more years. She has no clue about the worth of money. Oh sure she gets that a penny is one cent and so on.  The fact that things could cost more than a dollar is beyond her. She thought her twenty six cents would get her a stuffed animal at Disneyworld. I can’t say that we haven’t tried to teach her this. We have. She kinda got sidetracted by the whole there is tax on this item but not this item thing at the dollar store.

I want her to cherish things no matter what they cost. I want her to cherish them because of the meaning behind it. It took me awhile to get to this point in my life, I would like her to start off with it. To keep a grateful life close to her heart.

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When it comes to your kid and doctors….

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When it comes to your kid and doctors, you tend to put a lot of your trust in that doctor.

I remember being pregnant and realizing that my pediatrician was still practicing.

SQUEE Perfect right? Not so much. The kicker was it took me 13 months to realize it.

Recently I came across information that an eight month old died from type 1 diabetes.  That now that baby’s twin is being treated for type 1 diabetes. I look back at our four month struggle to figure out the lactose intolerance……It could have been easily been something more serious. more life threatening.   I can’t begin to imagine how this family is feeling. I can’t even comprehend it on many levels.  It makes me realize just how important the relationship between the parent and the pediatrician is.

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I may have had my education in early childhood education birth to five years. I was clueless in a lot of ways. I also had some emotional baggage that was still present so I wasn’t confident in my mommy’s intuition.  She was sick for two months from four months to six months but I was repeatedly told I was doing the right things and to keep doing what I am doing. Any mention of an antibiotic or something more was shot down.  I didn’t have any of the experiences with doctors that I have now. It took me six weeks to say NO. WAIT. THIS IS NOT RIGHT! It was the nurse practitioner that listened. Who looked at her history and immediately prescribed an antibiotic and a cough medicine as well.  Not only that I had been concerned about her breathing since birth but reassured so often that it was normal I started to believe it. When she was 13 months old she went to the sick kid daycare……they called because she had no voids and would not keep down Tylenol. They said if she did not void in two hours I had to take her to the ER.  We ended up going after she still would not take any fluids, even refused an ice pop, at five pm.  It turned out to be just a fluke femoral illness. The ER doctor said it was right to bring her and anytime a child goes that long without a void at that age it is cause for concern.  That was on a Friday. On Monday we had a follow up with our pediatrician. Who basically told me no more er visits and that it was no big deal. Made me feel about one inch tall and inadequate as a mother. I finally got enough mommy gumption to say enough is enough.

We saw the new pediatrician.  He reviewed her history and said one more ear infection he was referring her to an ENT that she should have been referred with our family history of ear tubes and ear infections already.

Within two months of seeing the new pediatrician we were at the ENT. Who had to medicate her with prednisone before he could do tubes because her lungs were so junky, he also referred us to an asthma/allergist.  The asthma doctor was horrified when she heard what I had to say, moaning in the hospital , fast shallow breathing. mouth breathing.  She was diagnosed allergic asthma at 16 months.  At 18 months we had done all the allergy testing.   A lot of pediatricians will not recommend or refer for allergy testing before two. Because kids that young don’t have allergies.  The fact that she was intolerant to tomatoes and carrots as an infant didn’t phase our old pediatrician.  The allergist said that shows she already has allergies.  She tested positive for outdoor allergies. Luckily not to cats or dogs which we had/have.

Now having gone through my own process of dealing with doctors and no answers. It wasn’t as hard as with the kid because i could communicate my symtpoms where with a kid, you can’t tell exactly how they feel. Even when she was five and we discovered she was lactose intolerant. We had a great pediatrician when we dealt with that who didn’t drop the ball. He immediately ordered bloodwork, recommended going lactose free first. We would explore gluten free later. But headaches and tummy aches could have easily been continued to be dismissed as anxiety over school. You can read about that here https://chronicallysickmanicmother.wordpress.com/2013/07/27/of-all-the-times-for-mommy-intution-to-fail/    I am thankful that it was not something that was life threatening. That it is easily controlled with diet. That is not always the case.

My journey through chronic illnesses has made me just super aware of how important it is to ASK QUESTIONS. QUESTION YOUR DOCTOR, DO YOUR RESEARCH. if it doesn’t feel right. DON”T BE AFRAID TO ASK FOR A SECOND OPINION.

It’s a dam good village

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The idea that it takes a village to raise a child…..it’s nice…but its hard to drop some of the pride and allow it to be so.

I was thinking about this as I was washing dishes tonight. It might seem a weird thing to be thinking about. However, things are not just things to me. They hold memories and feelings and connections. That water bottle a friend bought my kid. As I wash it I think about what a great friend she is. That person that saw a cup that my daughter would like and got it for her. I remember that too. Each and every time I wash them. Every time.

It had come up in a conversation a while back that a friend of mine was in amazement of the support net that I had made for myself. That I had made such a great one and how that it was pretty much something I had done in two years. Here is the thing though. I didn’t start out with that in mind though. There were just certain things that even if it included family had to go. The people who couldn’t accept the changes I was making went too. There were others who didn’t understand my decisions but supported me in it. Those I kept.

Friendship is a hard thing for me. To understand . to realize it won’t all be everything i need from one person. That each friend brings a certain thing to the friendship and that I give a certain thing in the friendship. It maybe odd but I have always had problems making friends, well that is not entirely true……Its more I have had trouble keeping friends.

I cut out anyone who was verbally abusive , who was constantly negative or if it wasn’t a give and take relationship. I had a habit of getting into relationships where I was the only one giving. It gets tiring and frustrating. You want to help but you end up just so tapped out. I refused to take into consideration family relations or length of friendship. I had to start looking out for me. Taking care of me. I had to do this for my daughter. I needed to take care of myself in order to take care of her.

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It wasn’t easy and there were many times that I started to doubt I was doing the right thing.  I can stand back now and see the village that I have constructed around my daughter and my family.  I have a village that rallies around me when I am down. I have a village that is not afraid to tell me I had to high of expectations and to give myself some credit.  I have a village that tells me when my expectations are too low. I also have a village that expects the same from me when it comes to them. They want my input and respect what I say.  I have a village that can give to my daughter sometimes things I can not. By things I don’t always mean physical things. Sometimes it is, the water bottle , the cup, clothes, sometimes though its things that matter more, like love and compassion and respect.

My village is not complete. I know that. It is constantly changing and shifting to be what it needs to be.  For me, For my husband for my daughter. We went with a mid-evil theme for our wedding, castles knights the whole thing.  So if it helps think about the constant changing and shifting that would go on inside the castle walls. Sometimes I stand back and look and think. It may be a small village.  It may not be completely family based. But its good. Its dam good.

Nothing in life that is worth it is easy. Building this village, it has not been easy. But its been worth it.  Its a dam good village.

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Just how much do you weigh?

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I have been trying to stay determined to walk, to loose weight. It also has the added benefit of exercise for the dogs and for the kid too. Less time on the TV for the kid too.
We have been walking a flat paved trail that used to be railroads. We live in Florida so bridges are everywhere….because water! Water everywhere.

We were coming up to just such a bridge when the kid asks me. ” Mommy how much do you weigh?”
“Enough..why?”

Then my sweet innocent beautiful girl points to this sign.

this one will work

Kids are harsh.

I could have just lost it and went off about how the medications I am on are to blame for so much of my weight and the other part is from emotional eating.

Instead I laughed.  Told her to “don’t get smart with me” and moved on.

Its just more fuel for my motivation to loose the weight.  I know how it feels to have the mother who is overweight. I had that mom.

We had a good conversation about healthy foods to eat, things to do for exercise and to drink lots and lots of water.  We discussed how sometimes we indulge in foods and eat too much.  How sometimes our emotions can make us eat foods that make us feel good.  That sometimes it is better to go for a walk than it is to eat when you are not really hungry.

It is hard to not let their words hurt us. To just give in and give up. To not let their words plummet us further into depression.

I have found though that pushing myself for these walks has paid out in many ways…… I sleep better,  and I slow down and pay attention to the little things, the discussions my daughter and I have are priceless. Sometimes they are painful. It is also letting her know though that she can talk to me about anything.  These walks tend to be our time.

I have recently been  motivated to take the dogs by myself. I actually am enjoying it now.

Just don’t tell my fibromyalgia. I try to sneak these walks in before it knows what hits it.

Aside

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^^^ because lets face it…I am!

Rules for participating:
1. You must link back to the person who nominated you. http://www.comfytownchronicles.com
2. You must answer the 5 questions given to you by your nominator.
3. You must pick bloggers, each with under 1,000 subscribers, to be nominated for the award. See Below for my Nominees!
4. You must come up with 5 questions for YOUR nominees to answer.See below!
5. You must go to their blog and notify them of the award nomination. Also email is a great way to notify them, if known.
*Be sure to include the Oh So Fabulous graphic with your blog post*
 
 

 

 

 

 

 

 

 

 

For My Nominee’s
1.  The Hoare    http://thehoare.com
2.  Mum’s the word   http://andieduncan.wordpress.com
3. Raising wild things  http://raisingwildthings.com
4.  They call me Mummy  http://theycallmemummy.com/about/
5.  A morning grouch   http://amorninggrouch.com
6.  Knot Sew normal     http://knotsewnormal.wordpress.com
8. Below the radar  http://belowtheradar002.com
9. Sarcastic Nanny    http://anannyslife.wordpress.com
10. Fibromyalgia its a real pain.    http://itsarealpain.wordpress.com
And Nominees, here are your questions!!
1.    1. What is your favorite thing about blogging? (The comments are my fave.)
hmmm I have a lot of things I like about blogging. Keeping memories, bragging about crap, inspiring others to keep going. 
If I had to pick one I think I would also pick the comments. INTERACTION BABY!!!
2.  What is your favorite drink? Or stress snack if you don’t drink. Wait, why not? j/k
Mountain Dew and a snickers can go a long way with me.  If I am able to drink….Margaritas baby! I am sure that choice has no connection to my love of salty things. NONE
3. What is the funniest post you have written? Or makes you smile the most.
Poop like the dogs. When my daughter came inside to tell me she didn’t have to go potty because she pooped in the backyard like the dogs do
4. Do you get why people like the McRib? Splain. Seriously. I don’t get it.
Nope…Don’t get it at all.
5. Are you sick of seeing memes and jokes about bacon? Why or why not? DON’T EVEN LIE.
Since bacon is not my top ten favorite food…..YES..I am over it…Lets move on …to something way more better like Snickers or pastries or chips!
Okay questions for my nominees
1.  What is the very first thing you think of when you wake up in the morning?
2.  Do you road rage? TELL THE TRUTH!
3. What is your biggest guilty pleasure? The one you don’t even know why you like it.
4.  How many text do you send per day?
5. Do you pour your coffee creamer in the cup first or last? (if you don’t drink coffee, LIE TO ME)
And I really don’t want to hear how these are out of order….

Oh so Fabulous Award…I would like to thank…..

Labels

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When you are chronically sick….labels matter. I know that seems so odd but it is true.

I recently received some criticism on my last blog post. At first I was really bothered by it.  I read my post again. I still agreed with it. I also can see what these people were saying.

It starts back when I was first diagnosed with Fibromyalgia. It took time of course but Fibro slowly started taking things from me.  I was slowly loosing the things that I had started to associate with being me. I had a career. No problem I will just find something else. Start a new job. Really really really like it. Four years later, taken again.  It has taken me a while to be comfortable to say. I am a stay at home mom. I don’t really know why other than I liked discussing both parenting and my career.  I felt like I was really struggling to know WHO I am.

Labels help doctors treat us. Labels help others understand a portion of what we go through overall.

Once a chronic illness has taken away working from you, you are trying to rediscover yourself again.

Labels suddenly become very important.

Labels don’t always mean you are a professional at it. Just that you enjoy what you are “labeling”. It gives you a connection to the real world that many times chronic illness has taken away. Think of all the person to person contact you have at work.  Now imagine that contact is taken away.  Now add typically a debilitating physical/mental issue. You have no reason to go out. No reason to have person to person contact other than any immediate family that might live with you.

When you get to choose what you are doing and participating in, labels don’t matter so much. They also tend to gear more towards professional “label”. Once that choice is taken away. The labels that you thought once defined you , no longer do.  You grasp at labels to wrap around yourself.  It takes a while to get comfortable with less and less labels. Slowly you realize it helps to have labels. It helps mentally and often that is the area that plummets soon after diagnosis. It is harder and harder to care and participate in your treatment plan when mentally you are falling.

For me , someone who struggled with labels to begin with, it took me years.  To tease out little interest and see if there is more to that.  Often I did this one area at a time and very slowly. At first the labels of my diagnosis were enough. It helped connect to others. It took me saying, I don’t care if I don’t make money at this. I don’t care if others like what I do. It is mentally soothing to me. It was still a slow progress but I finally feel like I am in charge and not my diagnosis’s.

Photographer- A person who takes photographs.

Writer-Is a person who uses written words in various styles and techniques to  communicate ideas.

Mother- A person who has raised a child, given birth to a child  and or supplied an egg that was united with sperm and grew a child.

These were found in Wikipedia. Not always the best place for research but often adequate for a definition.  Further in the definition it does say that both the photographer and the writer are often professional or in exchange for money.

The people that get upset about the labels we use often are not the people who understand what we deal with. What we deal with on every level, not just physical but mental as well. It takes awhile to let those criticisms just roll off. To not take it personally is a little harder, but I am getting there.