Mothers Always Know What Their Kids Need

Yesterday I went see yet a new doctor for a persistent new problem.  When I was given the potential diagnosis and the treatment I starting seeing the black hole swallowing me. I tried thinking I need to just wait for other test results. 

But on the other hand regardless of the results I'm just tired of it all. I have no clue how much more my body can take.

I needed to talk to someone. Hubby was my first thought but he was at work. I didn't want to call BabyGirl because I know how much she worries about me already and didn't want to wake her up. So I called my dependable mom but I got her answering machine. I left her message with me half crying so I wasn't sure if she understood me or not. I came home and wrote my sister a note because I know she sometimes know where Mom is and will call her until she contacts her.

The whole day passed. I had to return to the office to get more MRIs. Of course, when I was having the MRI, my mom left me a message that she had talked to my sister. She loved me and was there for me anytime and anywhere. Everything would be okay and we'll get through this too. 

When I returned home I called her. She could tell I was losing it. I was frustrated. I was scared. I was angry. She said, "Let it out." I sobbed uncontrollably until I couldn't anymore. She talked me down and she encouraged me as she always does. I wish I had a stronger faith as she does.

Isn't it awesome that mothers just know what their kids need at a given time?

I hope and pray I am at least half of the mother she is.

Until next time

Word Count: 311

My Feet Failed My Body Once Again..

It is such a frustrating and scary feeling when I am walking and then all of a sudden my feet are abruptly no longer supporting my body. I am falling. 

Like a hundred times I was returning from doing a few errands with a purse and small receipt in one hand and a light grocery bag in the other. I had just closed the door of Cora (my car) and was walking on the grating to my home. My Loving Husband had laid down the grating to make it easier for me to walk until we get more money to lay concrete and build driveway/patio/porch.

I fell. It could have been face first but with my history of falling, I now have the instinct to try to maneuver where and how I am going to fall in a split second. I can't honestly say which body part hit first. I am going to guess my knees because they had more damage. Then my torso, hands and cheek, in that order.

As I laid on the ground, the first thing I did was look around embarrassed to make sure no one saw me. I know. Weird. But every time I fall I don't want anyone panicking and rushing to help me.

When I saw the coast was clear I tried moving my body parts to make sure everything worked. When I tried moving my foot, I couldn't move it. It was stuck in the grating. I have no clue how that happened. The grating has small holes. Although my feet are small they are bigger than the holes.

Next thing I did was case my immediately surroundings to find something I could grab to help pull myself up.

I was right smack in the middle of my car and the steps. I thought in PG form, 'I'm screwed."  I saw my glasses, receipt, purse and grocery bag scattered.

I tried turning over to maneuver my foot out of the grating when I realized the other shoe had fallen off. Okay! It must have flown off as it was about 2 feet away.

I knew MyHubby was inside the house but he had said he was going to bed as he worked nights. I did not want to wake him. Besides I knew I could get myself out of this embarrassing and frustrating situation

I carefully worked my body into the sitting position. I yanked my foot out of the shoe then worked the shoe out of the hole thinking how do I get myself into these situations?!

I assessed my injuries and found only skinned knees. I knew I would feel more later.

I picked up everything then slowly crawled to the steps. This took about 5 minutes because of my skinned knees. 

I finally made it to the steps and pulled myself up and went into the house.

Lo and behold! MyHubby was still awake! I told him I thought about calling him on the cell phone but didn't want to wake him. He commented that he put the grating down to make it easier for me.

I concurred but what can I say? I know I worry him when I fall. If I could stop from falling I surely would. It's my life. Luckily, I don't do it as often. I usually catch my balance but the odds go against me when my hands are not free.

Later that night and the next morning I felt the rest of the injuries. Pulled arm muscles, bruised ribs and  I felt like a BIG MAC truck hit me. There was a bruise the size of a ping pong on my right hip and forearm.

I am happy to say I am fine now. Bruises are gone and I'm moving like my old self again. Oh and my pride is back intact.

Mystery Pain Diagnosis

I am tired of seeing doctors. I am tired of needing and taking medicine.

I am tired of spending money on doctors. I am tired of spending money on medications. 

I am tired of my body wearing down. I am tired of hearing, "It could be worse." I am tired of being told yet another ailment is due to my Autoimmune disorder or Cerebral Palsy."

It was my mantra to my doctor yesterday when I finally broke down and went to find out the source of my mystery pain and foot skin problems.

After my mantra he attempted to be empathetic and indicated he understood. No he doesn't. He means well. No one understands. Some people have an idea. But you never know unless you are experiencing it.

As I have told him in the past I get so tired of life. It seems to be too much to wish for one month, much less a year, to be with no new medical woes. When I have finally accepted, and learned to tolerate what I have, another diagnosis is sprung. 

How much more can a person's human body, spiritual and emotional ups and downs take?

Here are the ones I live with day to day: 

Cerebral palsyCP)

Polyglandular Autimmune Disorder Type II (PGA-II) with includes adrenal insufficiency and HYPOthyrodisim, 

Chronic Venous Insufficiency (CVI) 

Gastric reflux disease (GERD), 

C.O.P.D./Asthma/Chronic Bronchitis. 

Add chronic upper respiratory infections, chronic urinary tract infections and bouts of this and that in between, it gets tiring. It gets frustrating. It gets irritating.

He stated the obvious. "As we age, our bodies get worn and tired? I responded, "My body has been through the wringer and back. And he came back with, "But you are still here and that's good."

My first fleeting thought was 'Really'?

But I slightly processed his response for a few second, then declared, " I should not be alive. At age 30, I honestly did not think I would live to be 51. "

Encouragingly he responded, "But you are. Something wants you to be here. It could be worse."

I told him I know but I don't want to hear that. I am so tired of hearing.  He knows me so well he let it rest.

I reminded him I fought all these years because I wanted to make sure BabyGirl had her mother until she was at least out of high school which God answered that prayer plus more. I am actually going to be alive to see her graduate college unless something unknowing comes up and I die.  I know she can now live her life if something should happen to me. She was always my rock. She was the sole reason to keep going and fight it through,  I know now she will he able to survive if God finally takes me.

He was genuinely listening to me and I saw concern on his face.

I reassured him that I am not in the suicide mode, then jokingly added I get in the mode from time to time and  wish he would give me something just to give me a peaceful death.

After reiterating the purpose of his oath he took in saving lives, he questioned of the possibility of the need of an antidepressant. 

Smiling, I said, "Doc, did you not hear my mantra?!" 

He then sighed and started examining me. Yea, he knows the time to quit.

 I have another yucky wet rash on my foot. The heel is wet and raw. I want to scream when I put in water, Actually, Hubby was in bathroom with me when my foot hit the water, I was hanging onto the shower rail barely hopping on one foot raving using unladylike expletives along with "OW OW Ooh" Remember, I have limited balance on two feet much less one. THANK GOD we have a shower seat. As soon as my butt hit the seat I only had to contend with the bottom of foot not getting wet.

I have been having to walk on my tiptoes. (Sorry MOM & DAD! I know you paid for surgeries to not do that very thing! Hopefully, it is temporary.)

A few days ago I plucked off what seemed to be another layer of skin that had grown. It was ABSOLUTELY GROSS.  When I stepped it hurt and itched. 

It feels like I'm walking on a spiked lily pad.  

Just one week ago, I had finished a regimen of Prednisone Doc sent over the phone for what we thought was a recurrence of Hand and Foot Disease  I have had 3 times in the last 9 months.

I love him because he is down to earth.  When he looked at my foot he grimaced like I do when I look at it. I have to use a mirror because I can't move my foot in the position to see it.  This time he said it is Eczema which is associated with my immune disorder, asthma, hay fever and C.O.P.D.

"BIG SHRUG AND SIGH" BLAH! BLAH! BLAH! ARGH!!

We then turned to my mystery pain. The mystery pain has waxed and waned.

In addition, one night I had severe chest pain but not like a heart attack. At first I thought it was pleurisy or I fractured a rib from coughing. (I have done that before!)  It was excruciating pain. It nearly immobilized me. It hurt when I moved. It hurt when I exhaled. It hurt when I laughed. (Of course Hubby would inadvertently make me laugh.)

Then there was a different night when my right eye had a tic. It went on for two days but disappeared just as fast as it appeared. The tic came in a series of 10 tics in 20 seconds. Yes, I counted and timed it.

Doc pulled, pushed and squeezed my arms and neck. He succeeded in making the dull pain I had worse. He said the pain could be from a number of things. He rattled off arthritis, herniated discs, Pinched nerve, spine spurs, and degenerative disease,

His best guess without tests is a pinched nerve and arthritis. I had already suspected some arthritis. 

Here is a simple explanation. We have nerves throughout our bodies. Nerves are surrounded by connective tissue, muscles, bones, cartilages and tendons. Sometimes too much pressure on these squeezes causing a pinched nerve. In my case, I have tight muscles from my CP, and something happened that my muscles are clamping on the nerve. Maybe I moved wrong or laid on it wrong. Or my muscles are just tightening more with  the age process. He also thinks the arthritis may also be from my CP.

Exasperated shaking my head, t "No! No! No!  Don't say that! I am on a CP group and I read many people have arthritis and such because of the long term effects of CP. I only have a mild case and was relieved I didn't have to deal with that although I had compassion for them. I don't want to be another statistic!"

He continued to remind me that the way I walk and stand puts more pressure on my body and I've done so well but things change. He apologized for having to give me that news. 

It actually makes perfect sense. 

It'll take time to accept it.

Sort of resolved, I asked him the treatment of all my acute medical woes. He gave me another regimen of Prednsione. Good thing is it should help both my eczema and maybe help inflammation in my joints and muscles I may have. He also gave me a prescribed cortisone cream. (It hurt like hell to put it on but the itching is gone, for now.). He showed me some stretch exercises for my head, neck and arm I can do sitting down. He said a massage could work. I said I love massages but I have to pay him and for my meds and after that my pocket book is too low to pay for that luxury. We agreed Medicare wouldn't pay for it.  However, I can get one free, my Hubby loves me that much! I also need to get back on my Wii Fitness. I used to take Yoga but it is too darn expensive here and the hours suck.

The last thing he suggested was trying a gluten free diet told me things I don't eat on gluten diet. I blurted, "Geez doc! That's what is making me gain and sustain my weight. No rice? Seriously?"

He informed me to take it slow and there are products that are gluten free. I commented,"Yea and as always healthier isalways more expensive. To take something out of a product costs more." He concurred and said, "Think about it." We knew we could have discussed this further but I think he was afraid it would send me further in my downward spiral at that moment.

I have and researched. I'll see what I can do. "SIGH"

Sorry this is long but I had to get it all in. But now we all know what is possibly the problem, I have the drugs and exercises. All we can do is wait and see.

My Household Entertainment

This is what Hubby and I do on Saturdays. Stay in jammies and play PS3 and Wii games. LOL!

I almost did not post the pic.Why you wonder?

 I normally don't like taking pictures, especially waist down. I don't know exactly why. I know part of it is I don't like the way I stand. This picture doesn't show it too much. 

My hair is a mess, 

And as you see I am in my pj's. 

My Handsome Lovable Hubby is in the background watching me. He just smiles. I ask what is he thinking and he says "Nothing" but hmmm….

He is probably thinking, my silly wife. LOL!

I had trouble getting PS3 motion controller to calibrate all week.  Hubby was finally able to.

After some archery, tennis and bowling I am tired. It is amazing how these games can wear you out.

Being on my feet even for a short time is a challenge as well. When I am having fun, I ignore it as much as I can and take little pit stops and sit for a minute or two then I continue on until I can't really go on.

So this is how we entertain ourselves and each other.

Sometimes I enjoy just watching him play some of his games. 

That's one thing we differ, the genre of games we like and play. He likes cars, sword fighting, boxing. I like shooting like Doom, trivia, arcade like games. However, both of us enjoy one car game and the Sports games.

So for those who didn't believe I wasn't feeling better, here's evidence that I am!

What does your family do for entertainment?

Update on Post Regarding: Embarrassment because of CP in FAMILY AND FRIENDS

After a previous post I continued to read the thread on the Cerebral Palsy group.  It disturbed me to see how many others with CP were seen by family members.

I was feeling hurt for these parents. I felt like the embarrassment was directly pointed towards me. On the other hand, I continued to think how God blessed me with such a loving and compassionate daughter.

I needed to call her. There was a deep longing to talk to her. When I heard her voice I started crying. I don't know why.  I really can't explain it.

As I was blubbering I thanked her. All she heard was me crying. She couldn't understand me. It is hard to understand me when I am crying and upset.  Concerned, she kept asking, "Mom, what's wrong?"  I heard some panic in her voice. She thought something happened.

After I calmed down, and took some deep breaths. ( That's our instruction to each other when we are upset) I thanked her for being such a good daughter and explained to her why I was upset. She said it is okay and she loved and appreciated me the way I am.

I needed confirmation though and asked her to be completely honest and tell me if she was ever embarrassed by my CP. She said absolutely not. She didn't think much about it except for when it was hard for me to do something but never embarrassed.

She also reminded me that when she was in 4-H she did a presentation on Cerebral Palsy so maybe others would understand. She doesn't remember the day she stood up for me. But I certainly do because it was that moment that I knew she would be okay with a Mom having CP.

Anyway, regardless how that thread upset me, in the end it made my daughter and I bond even closer. If that is even possible.

Every day I thank God for my daughter. But I have added a thanks for not just the daughter he gave me but for the loving, compassionate person she is.

Embarrassment because of Cerebral Palsy In Family and Friends?

From time to time I go onto a CP Community Board on Face book. It is for all who have CP to congregate and ask questions and/or share their stories.

As I was scanning through I came upon this question. 'Ever see your child "embarrassed" because of you? '

Surprisingly to me, many had stories about their children being embarrassed.  Some kids requested they not walk with them etc.

It sparked a reminder of one of my online friends/fellow blogger had a set of parents who were not accepting as she grew up.  When I heard her story, it also boggled my mind. It still does when I think about it. She is a strong person getting through it all but I can't even guess how she felt.

One girl shared that she was asked to  walk in her friend's wedding. However, when the parents met her they said she would ruin the wedding. 

SERIOUSLY?!

The girl told her friend it was okay to find someone to replace her. She wanted her friend's day to be special and go smoothly. She knew her friend wasn't embarrassed.  

I admit she took it better than I would have. I probably would have done the same thing for my friend. But on the other hand I think I would have been hurt because she did not stand up for me. 

Reading other people's experiences make me realize how blessed I am. I have a family who have never been embarrassed by me.  They accepted me for who I was. 

I can say without a doubt that my sister was not embarrassed by me. Yea, like every sibling rivalry she probably wished I would go away as I was a pesky little sister. It was my job to make her annoyed, I admit I did it well sometimes!

None of my friends were embarrassed by me. But then again, I would not have friends who didn't accept me the way I am and were embarrassed of me. I was in two of my friend's weddings. I couldn't believe they asked me. I had voiced my fears of falling down the aisle with the long dress to one. Her response was it could happen to anyone and if I did, she would just come pick me up. It meant a lot to me that my friends accepted me and loved me enough to ask me to wobble in their wedding. (It was supposed to make you smile!)

My worst fear was for my child to get teased or embarrassed by me. But early on she showed she was not. She defended me when one of her classmates teased me and let him know it was in his best interest to keep his thoughts to himself. And in the fourth grade, she had a 4-H project. She did a presentation on Cerebral Palsy. 

It's unimaginable to me that people who are important in your life would be embarrassed by your CP. I just can't wrap my head around it.

I am sure I will be thinking about this for a bit, trying to figure it out. 

My jumbled thoughts are:  

It is not like you can do anything about it if you have CP. None of us with it asked for it. Probably all of us would agree that if we had a choice we wouldn't have it. But we're stuck with it and we just have to make the best of it. 

I understand children can be selfish and inconsiderate at times but to treat their parents who gave life to them like that, is incomprehensible.  

I understand some teens go through a phase of independence and embarrassment of their 'normal' parents. And maybe that is also true for children of disabled parents. 

As mentioned by others in the CP community  my worst fear came true for them. Their kid were bullied because he had CP so the kid requests they stay clear of him when they are at the school.  Or their sibling has CP and they are being teased because of it.  

Maybe it is not totally embarrassment but fear, of them not being accepted by others because of their parent or sibling with CP. 

It is such a cruel world. 

I don't know. I guess it never happened to me and I can't understand it. In my life, family was important. We were to love, respect and accept each other, period. 

What do you think? How do you think you would feel if you had any kind of disability and your child was embarrassed? 

Awkward Moment with Priest Because of Disability.

As most people with disabilities, I have to deal with ignorance. Some I have written about. Here is a previous post. As I have aged I let much of it roll off my back. I don't worry about it. You get used to it for the most part. But we are still human and it upsets us sometimes.

Sometimes I find it humorous.  I've seen people, both adults and children, staring at me as they walk not looking where they are going and nearly bump into something or trip. I giggle and think it serves them right.  Hubby sometimes notices and says under his breath, "Take a  picture."

I understand the curiosity. I really do.

I hear adults talking to each other, "Oh like at that poor girl, she is so crippled" etc. I probably could fill a whole book with a collection of what people have said or done. 

Kids are the worse. They are the loudest. They laugh, point and attempt to imitate. Sometimes I want to just go over to them and smack them. But then I remind myself they were not raised properly. It is really not their fault.

For the kids I have come up with some answers. They'll ask in different versions, "Why do you walk funny?" I learn to say, "God made me this way."  Which they don't understand either. Their attention span is so short they move on.

I hate attention to myself immensely. If you read my blog, you know that. 

This past weekend after mass Hubby and I strolled with the crowd to the exit where Father was standing. We just started going back to church and this Priest wasn't there before. 

We make our way and I shake his hand and told him I enjoyed the sermon. It was a great sermon. Then he looks down at my legs and says very LOUDLY, "Oh my! You walk with a limp. What happened to you?" I felt like everyone got quiet and turned. 

Okay, maybe not EVERYONE but some did. It was one of those moments I detest. Everything just blurred. And I am not one to have a quick comeback like I wish I would.

I awkwardly smiled and said"It's just me". 

He continued to stare at my legs, "Your limp is just you? What happened?"

I was not going to stand there and explain to him because 1) There were people behind us waiting for their turn. 2) If I told him he would have no idea what it is anyway. 3) It was one of those moments that I felt very uncomfortable and I was almost speechless. I wanted to run out of there.

The first thing that came into my head would not have been proper to say to a Priest.  So I just responded, "Its the way I walk."

Hubby didn't notice much of it because of the crowd and he sometimes just doesn't pay attention. He was holding my hand but I let go because I just wanted to get away as I could from the scrutiny. 

Later that night, I expressed my feelings to Hubby. He said he heard him but he didn't notice how embarrassed I was. He took it as the Priest being curious. I think he is conditioned as I usually am.

As I thought about it during the night, I because furious and confused. How can a Man of God be so ignorant?  How can this man so blatantly and loudly embarrass a parishioner?

 I talked to my Mom about it this morning. My argument was he is supposed to be the Man of God. He shouldn't have scrutinized me like that. She told me to remember that he is also a Man, a human being with his own faults.

For some reason I can't get that incident out of my head.  I usually brush incidents like that and move on.  I guess because the last person I thought would do something like that was a Man of God.

We won't be going to mass at the church this weekend because we'll be at a retreat. But what about the next time?  

Maybe I should hand him a print out on CP?  I thought about emailing as they do have a site explaining to him my limp and the way he made me feel.   But is it going overboard? 

Why do we, people with disabilities, always have to explain to people why we walk the way we do or why we do the things we have to do with a disability?  To COMPLETE STRANGERS, no less.

I hope you share your honest thoughts with me and if possible, share this post. How would you have responded?  Eventually, I'll get over it.  Did I overreact?  I usually don't ask anyone to share my posts. I figure if you want to share it, you will.  But I would really like as many people's views of the situation as possible. You can agree or disagree, any feedback is appreciated. Thanks in advance.

Update

I hope everyone is having a wonderful Labor Day!

I was on a path of writing regularly than SLAM! I started a few but threw them in draft. My thoughts are all scattered. Let me just tell you recent events.

I got my disability check BUT not last month's. So I am in the system once again. I am still contemplating if I want to get a lawyer to see what I can do or just chalk it up to the government and leave it alone. I don't give up easily but what the lawyer would charge would probably take what my check is worth plus more. 

Last week My BabyGirl and I had a sleepover. We had our weekly outing. Since  MyLove was out of town and she seemed to be alone I asked her if she wanted to come spend the night. So she packed up and we came here. We watched two movies, talked and I put her to bed around 10:30. It was hard to do but I told her to take the phone off. We woke up and I brought her to college.

After her morning classes, I picked her up and brought her to the apartment so she can get her bike and ride back to college for her evening class. I enjoyed my time thoroughly and didn't want to let her go.

A while back I was searching YouTube for a country singer my daughter had mentioned. However, the suggestions on the side grabbed my attention. If any of you have not seen Annoying Orange you gotta see this. OOps I tried putting it below but it kept going where it is now.

There are various videos featuring Annoying Orange. The laugh is wicked. It is cool the way the creators have the mouth move to the script. I cringe every time the knife comes even though I know it is going to happen. I now have to have my "Orange" fix every day.

I also have joined a couple of groups on Facebook. One only accepts people with cerebral palsy. It is astonishing to see so many people with the same difficulties and although our lives are different, we have some similarities. It is nice to be able to know somone ACTUALLY knows how certain situations make you feel.

I also joined a "Remember When you Lived On" ...:.and it states the little island I grew up on.  It is remarkable how many people lived there before we did and after. We remind each other the little things we had forgotten. We remember the people that have touched our lives. We remember our adventures we had: Going to the sandpit, swimming in the bayou, stopping for the alligators to cross and much much more. Everyone remembered chasing the train man and he throwing candy to all of us. We remember our field trips, the little school we went to etc.

Most of all we realize  how special that island was to grow up on. We never thought we would be reminisicing living there. It was a true beautiful place to live.

 I used to wish there was a place like it to raise my daughter. But there will never be a place like it.

My BabyGirl's Take On Having a Mom with CP

I can remember my mother always walking differently than everyone else from a young age, but it never bothered me. I always understood that I needed to walk a little slower, so I could stay at the same pace with her. I don’t remember asking why she walked differently until I was about in the 3^rd or 4^th grade, but I’m sure she explained cerebral palsy to me before that. 

The thing I remember most though were the kids who made fun of my mother. That wasn’t okay with me in the least bit. I always stood up for my mother. Kids are cruel, but I tried my best to not let them get to me. I let them make fun of me, but once they started on how my mother walked differently, they earned a mouthful from me. My mother actually recently told me how one of my teachers from elementary school saw me stand up for her, and they told her about it. The taunts and cruel words are inevitable, because when people don’t understand something, they make fun of it. The important thing though is not letting it get to you. You know the truth, and that’s what matters the most.

My mother’s cerebral palsy has never affected how I interact with her on an emotional level. I love my mother all the same, no matter what. If someone doesn’t understand that they need to slow down for my mom or that she’s still the same person, it’s not my problem and they aren’t in my life. I make sure that the situation is better for her walking wise, or that I slow down so that she isn’t tripping over herself or anything like. She fusses at me for wanting to help her when there are high curbs or anything of the sort, but it’s only because I care about her. I prefer to help her up there rather than see her trip.

In the end, my mother will always be my mother, no matter what. She’s raised an independent, well-adjusted child who knows how to handle herself and the world before her. If anything, I’ve learned how to be a more understanding person thanks to my mother. I love her, and I dare any one to mock the way she walks. If my mother hadn’t been through what she has been, I wouldn’t be here, and she wouldn’t be the person she is.

An Inspiration-Father of Special Needs Children

I've been following a father who has 11 children with 3 of them having special needs. Two have severe cerebral palsy. On Facebook, this man always writes moments of their lives, mostly with humor. He has a website http://www.fatherof11.com/ that everyone should check out. He has a video summarizing his life and the special needs kids. His facebook ID is Roy L Ellis.

I've watched the video many times and every time it never fails that my heart becomes heavy. It's such an inspiration.

At first I thought this could have been me. I was lucky to not have CP as severe as these girls, Emma and Hope. But then again, there is nothing to feel lucky about because these kids are so loving and smart, even with the severity of their disabilities. They are indeed special! They are a gift of God to these parents who took it and approached it with nothing but love and compassion. You can see in the words of this man how happy he is and proud of these kids accomplisments.

I can't seem to explain exactly how I feel. I admire this man. I see the kids and know God is watching over this family. I always comment that he is an angel and he is. He takes each day and finds humor and hope in every situation.

I hope he doesn't mind me writing and posting this but his post about the daughter-dance just inspired me to write although I have failed to express my true feelings.

Alot of people should see the video and follow Roy, It can make your perspective of things more positive.