Wednesday, August 20, 2014

My BabyGirl is 22 Today!

Having children is such a blessing.

I remember the day BabyGirl came into the world. It was 22 years ago on this date at 4:04 AM. After a bit coaxing, she let out a screeching cry, seemingly angry that she had to come out of her bubble.

I counted her toes and fingers. I touched her baby soft skin. I rolled my fingers through her fine hair as little as she had.

Tears of happiness flowed. I realized at that very moment my life would never be the same. The bundle of joy in my arms was all mine. (Yea, her Father's too). This little human being was going to be dependent on me for the first several years of her life.

How scary that was!

I thanked God and then asked him to help me raise this beautiful child to be successful and live life to the fullest. I knew it would have its challenges and maybe more so because of my disability.

She was special. She sensed her mommy was different. She and I together learned to improvise.

She became the sole reason that I kept fighting illnesses and kept me wanting to live. My world surrounded her entirely. She was my rock.

Before she became too heavy for me to bend down and pick her up, she learned to climb my leg so it was easier for me. I think it was instinct.

As she got older, she attempted to use my disability to her advantage a few times. When she was in the terrible twos, she would run away from me when she knew a slap on the butt was coming for doing something wrong. I always got her one way or another. But it was obvious she forgot at that moment as she was running.

But when we were in public, I had rules. She was always to hold my hand the moment I took her out of the car seat. If I was doing something in the car or had to do something with my hands, she was to hold my leg or jacket. There were no ifs, ands or buts. I have to admit, she obeyed very well.

Like any child, she tested my limits. Once, at a post office I had put her down and she just took off running. It was one of the scariest moments she gave me. Thankfully, an elderly man stopped her and told her to wait. Still on adrenalin, when I got a hold of her I shook her a few times and yelled at her. I saw eyes on us as people walked by. I'm sure they thought I was a crazy woman. After I shook my fear and anguish from her I grabbed her and hugged her and asked her not to do that again. This happened in a matter of less than 30 seconds but it seemed eternity.  She never did it again.

During her school years, she was smart and did her schoolwork without any argument. I remember during the summer months, other parents couldn't wait for school to start so their bratty kids would be out of the house. I never thought that way. I was busier in the summer chauffeuring her to summer programs she wanted to do plus karate but was sad I wouldn't have those extra hours with her. She was in T-Ball, Softball, Dancing and Karate. She did well in everything she put her mind too.

Karate was her passion. She was excellent at it earning her Black Belt and teaching the younger kids for a while.

She went through so many different phases I  nearly got whip lashed. I earned a few grey hairs, that she really wants to pull but it is my trophy for getting through it. MyMom would encourage me and tell me that she was just trying to figure out who she was. She was right.

When she became of age, she left home. She wanted that independence of everyone. I have to say I cried at night sometimes with worry. I prayed so hard to keep her safe.

She has supported herself with part-time jobs and going to college full time which she graduated.

She's had so many bumps in the road I sometimes wondered how she would get through it.

I remember everything we've been through together and what she has been through alone. She is so very strong and meets her challenges head-on and gets through every one of them.

We are as tight as we were when she was younger. We had a rough period but came out of it stronger than ever. We love and appreciate each other even more.

She has grown to be a beautiful young independent lady. I can't voice the words to describe how proud I am of her and how deep my love runs for her. She is the light of my soul and always keeper of my heart.

Happy 22nd Birthday BabyGirl! I wish you to have many more with happiness! Always remember to be who you are. You are so unique and there is only one of you. Stay the loving, quirky and compassionate person you are.

Saturday, August 16, 2014

Cerebral Palsy: Muscle Cramps

Cerebral Palsy brings on many effects to the body. Muscle cramps are one. As a child I would get them often. They were mostly in my legs, specifically my calves, and in my hands. Most of the time it is only one limb.

I remember my Mom laying me on the white deep chest freezer moving my limbs doing various exercises at least three times a day to try to prevent the cramps. It was to loosened and stretch my muscles. 

I hated that freezer. But thankful Mom didn't let my tears get to her.  

I remember when the cramps would occur in my legs, she would put me on the freezer or lay me down wherever we were and move my limbs and massage the area as I cried and wished it to go away.

When they occurred in my hands my fingers became stiff. I constantly had a squishy ball in my hands when I was in the house to squeeze to strengthen and loosen my hand muscles. I didn't understand then why and I hated the ball and probably Mom for nagging for me to squeeze the ball. Again, I am now thankful.

As I have grown older the cramps have lessened but they still occur and probably will until the day I die. However, they now occur in the weirdest places of my limbs sometimes.

Some are in my toes. Mind you I can't move my toes, individually. When I try to move my toes my whole foot moves. But when a cramp occurs, my toes move into a scissor-like position. I have to manually move my toes back in place and massage the soles and roll my feet to work the cramp out.

I continue to have them in my calves, especially when I walk a lot during the day but they often occur  seemingly for no reason at all. When I get them I usually have to walk them out, and they are usually at night when I am about to fall asleep or while watching TV. I sometimes have to pace the floor as long as an hour before my muscles finally relax. 

It's a pain in more ways than one.  Sleepy and tired and have to pace in the dark while I listen to Hubby sleeping. But I deal with it.

Then there the cramps I absolutely hate the most. Even as a grown woman, it can bring tears to my eyes. Those are in the arch of my foot. Walking them out does not work. Actually, walking causes the cramp to spread up my leg or intensifies.It feels like my little bones are knotting up. Note: I said bones not muscles. They almost always wake me up at night, like last night. I just manually roll my feet and manipulate it until it finally dissipates or sometimes I work it to get a point that it is not as bad to lay down and fall asleep. They seem to take the longest to work out.

At one point in my adulthood, they would occur at the most inopportune time. I know. There is no convenient time to have a cramp. But in midst of intimacy with my then-husband, the cramps would appear and certainly 'kill the mood."  It was frustrating for me not to mention painful. I finally got the courage to talk my doctor about it. He put me on a very low dose of Xanax every night. Since that day years ago cramps no longer 'kill the mood'. Sometimes I feel my muscle start to knot but I've learned to deal with it and work it through as they are not as intense. I don't have to push my Hubby off like a craze woman anymore.

Cramps have been and always will be a part of my life. I do stretch exercises. All my electrolytes are fine. I just accept it is part of Cerebral Palsy and thankful it is not worse.

Wednesday, August 13, 2014

CVS and I at a Possibly Good Place Now

Every month I go to CVS to pick up my medications around the same date. 

For about six months every time I went it was always something. One of my meds had to be ordered but I received the message that my order was ready so when I went to pick them up, I was understandably irritated when I was told I would have to go back the next day to pick up that one.

There was a pharmacy crew that was loud, obnoxious talking among each other making their customers wait. Sometimes I would walk to the counter or drive up to the window and it took them forever to even acknowledge me. I timed it once and it was 10 minutes before I was even acknowledged and there was only 1 other customer.

A few times my family doctor would send a prescription 'electronically' and when I would get there 1/2 hour to an hour later I had to wait. 

Or sometimes the pharmacy would say they did not get the prescription yet but when I called the doctor's office they said they had sent it.

Sometimes my doctor would give me the prescription and when I went to fill it, they would ask me what time I would pick it up. Duh! Why do I have to come back to get my meds?Whatever happened to pharmacies filling prescriptions right then and there? I would have to wait for 1/2 hour-45 minutes after explaining to them that I lived 20 miles away and really didn't want to come back.

I would fill out the survey with my complaints. Nothing changed except a while later I noticed a few of the obnoxious employees gone.

A few weeks ago the crap hit the fan but it changed everything.

I went to my dermatologist and she said they would send the prescription electronically. It happened again, CVS said they hadn't received it yet. So it was merry go round again. A day later I got my medicine.

A week later my dermatologist had to change my meds so they said they would send it electronically. I waited an hour and called CVS. They said they didn't receive it yet. I called the dermatologist and the nurse said she had sent it.

I called CVS back and told them what the nurse said. The pharmacist assistant said, "Well we didn't get it. Give it more time." I thought a fax was supposed to be fast?

I was miserable and aggravated and needed the medicine. I waited for a few more hours, checking my CVS account online. Still no new prescription. I called the pharmacy again and she said they didn't receive it but she would call the office itself and see what was going on. I called the dermatologist and the nurse insisted she had sent it. I told her the pharmacy was going to call them.

Situations like that you really don't know who to believe. However, considering the history with CVS I sided with the doctor's office.

I waited for 2 hours and no response.

I decided to take a step to higher authority. I called the store's manager.  I let loose all the aggravation of all the other months' in addition to the present one. I told him I was at the verge of taking all my prescriptions letting him know it would be a monthly $1000+ out of his store and I would never recommend this pharmacy again.  He told me he would look into it and call me back.

However, a half hour later the PHARMACY manager called me back and angrily exclaimed, "YOU did not have to call the manager, I told you I would call the doctor's office!" Obviously, the store's manager got on her case. 

I retorted, "It was two hours ago and I'm still waiting." We bantered back and forth. I told her I couldn't believe she was doing this as a professional. I reiterated what I told her manager and all the previous problems.

She then said, "Well for your information, I talked to the nurse and she couldn't tell me what time she sent it because there was no time on the fax. So YOU are blaming the wrong people." I conceded that may be true but asked what did she suggest I do since I've been going in a circle with them and the doctor's office."

Never answering the question, changing her tone to defeat she said, "Anyway, I did get the prescription  and you can come get it in 20 minutes.

When I got there, I could tell there was tension but I was polite and thankful.

After that when I reorder my medicine they call me and tell me if one of my meds has a delay.
When I go pick up my meds, they are on the ball.

A month later when I went to follow-up with my dermatologist I gave her the scenario of the problem with the electronically prescription. I told her I would so rather her to just give me the prescription on the paper. She said it was not their protocol, all prescriptions have to go electronically. She also confessed they were having a problem with the fax at that time and it was probably their fault and apologized. But she offered to give me a copy of the prescription so if this happens again I'll have that to show them. 

She told me they would send the prescription since we were changing one. I thought here we go again. 

But get this! Before I got out of the parking lot, I received an automated phone call from CVS saying that my prescription was ready. Now that was fast! When I picked them up, they were ready and was given to me with a smile.

I don't know what happened behind the scenes but every time I reorder my meds online and they see it may take a day longer for one they immediately let me know. When they see me, they smile and are attentive.

At times I feel like a bitch or complainer but then why does it take an act of Congress to do something so simple. I know some people think I am a bitch or demanding.  Maybe I am sometimes. However, I always remember my dad telling me I will need to stand up for myself, speak up when I think something is not right and never let anyone walk all over me. 

At least I seemed to have learned at least one thing he has taught me.

One more little story for those who are not on Facebook.

Yesterday, I went to Murphy USA to get gas. As many times before the receipt did not print. I wonder why it is called "Pay at the Pump" when  you have to go and get the receipt.

Anyway, I politely and cheerfully requested my receipt and hinted the pump must be out of paper. The clerk sarcastically said, "No it is NOT out of paper, it is probably jammed!'

My instantaneous comeback was "Then unjam it."

She paused, stunned. Then gave me my receipt and I went along my merry way. I was so proud of myself for coming up with such a quick answer and stunned her to silence. One of my former coworkers and friend commented.: remember well little LISA and her temper. You're like a RATTLE SNAKE, ZAP, STRIKE, AND YOUR VICTIM IS STUNNED AND DONE. THE LOOK ON PEOPLES FACES, NOT EXPECTING IT. LMAO

Yep, don't mess with me! HA!

Thursday, July 31, 2014

Diagnosis of Rash

I have been having this awful  rash on my right foot. It started in November. I went to the doctor and he gave me medicine (cream and pills) stabilizing it for a while but it seemed like it just cycled back to the beginning.

It started with red bumps on the soles of my feet that itched so bad it nearly drove me insane for a few days. The itching was so bad it made me nauseous. Then it turned brown and became very tender. It was hard to walk as when my foot came into contact with anything it hurt It felt like walking on a lily pad of needles. Whether it was water or the floor or my socks, I had intense pain and itching. After several days it started to peel. It was like a whole new layer of skin but scaly. While I watched TV , I peeled the skin. It was absolutely gross but it helped the itching. Then it seemed like it would start all over again. I was miserable. Sometimes the itching was so bad I was nauseous and I wanted to just scratch my skin off!

However, a few bumps started on my arm and hands. I had enough! I called a dermatologist. A month later when she looked at my foot she exclaimed, "Oh sweetheart! You have a bacterial infection and I think fungal infection. I am going to do a biopsy for a culture."

I gasped, "A biopsy?" She emphasized we needed to find out what this was because it was very bad. She did the biopsy right then and there. All I felt was a sting when she inserted the needle to administer the local anesthetic.

She informed me this will take a while to heal but she was confident that we could beat this.  She sent me home with samples of a cream, a strong antibiotic and oral Lamisil, an anti fungal. This medicine regimen will be a 6 month journey! The Lamisil I take once a day for two months straight then for the last four months I take it for only a week per month.

The next day this rash spread to my other foot and hands. I thought I would go insane. (Okay, no wisecracks here!)

I developed nausea and my GERD flared. But changing the time I took the Lamisil and a little baking soda water has kept it sort of stable.

A week later the nurse called me to inform me the culture indicated I had ID reaction and a severe infection. She changed that one cream to two creams, one for weekends and one for weekdays and continued my other meds.

During follow-up one week after the phone call, we were happy it was better with less itching and looking a little better but still a ways to go. She told me she still wanted me on an antibiotic so she gave me a less potent antibiotic that I actually never heard of and continued my other treatments.

I expressed how I felt about the rash on my hand was making me feel like a leper.

I have lived with a physical disability but this extra medical malady has really worked on my self-consciousness. I don't want to shake any one's hands. I don't want to give money to a cashier. I don't want to go to Communion. I don't feel comfortable cooking or even touching MyHubby.

She offhandedly said the "light box' could help with the scaling skin but it would have to be 2-3 times a week and she knew I lived out of town. She also mentioned at a later date that maybe we can do a patch allergy test because she believes I am using something or touching something that I am allergic too that is causing this.

The only type of light therapy I heard of was used for sleep disorders and seasonal affect disorder.

I asked her about the light box and she explained it to me more thoroughly. It could help with the scaling of my hands and feet but it is not necessary. I told her I didn't mind going twice a week if she thought it would help. She said it would probably only be a month but she thinks it'll get things moving along a bit faster.

I walked away with a prescription for a different antibiotic and an appointment to start my light box treatment Monday. I am to continue the creams and other meds.

Another tidbit I learned from this was wearing colored socks aggravated conditions like I have. The best socks for everyone to wear is white cotton socks.

That's where I am with this condition. It's always something. I am amazed my little body has endured so much and still functioning. Thank you God :).

Wednesday, July 30, 2014

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.