Help

On Sunday, a CD/DVD spinner that my husband made was done. So I was going to put our CDS/DVDS in it while he was doing something else around the house, but I couldn’t get the CDS in good. I got frustrated with myself that I can’t do it myself. I don’t that feel I can help my husband with anything around the house and it makes me very angry!  He had to finish putting the CDS in but I got the DVDS in because they went on shelves. If anyone with CP is married and have problems like I do, please email me at cp.princess70@gmail.com. I would love to hear from you. Take care.

My in-home aide

I don’t like having an aide. I hate not being able to do stuff myself; I would love to have a job but I would give anything if I could do simple things; such as walk, talk, feed myself and take myself to bathroom. Plus, I would love to lie in my bed or sit in the recliner whenever I want to, even if I’m home alone. Now, I can’t because if there’s an emergency, such as a fire, a robber or if my husband gets in an accident, I can’t get up myself if I need to get out of the house. That sucks!

Anyway, my in-home aide called out sick today. I’m glad because I feel free when I’m home alone. I feel I can do and watch whatever I want to. Some aides make me nervous, watch every move I make. That’s why I tell the nursing agency no when they ask if I want a fill-in. my aide and I got used to each other. My husband comes home at lunch if I don’t have help here which I enjoy. Mom doesn’t like me being here alone  but I do and my husband seems not mind; I might be wrong about that; I’m not sure.

Having faith in the LORD

Hey, I thought I would post one of my devotionals or something inspirational for my post every Sunday. I hope you  enjoy them. Here's the first one.

Having faith in the LORD

Read 2 Thessalonians 2:13-3:5

Now may our Lord Jesus Christ himself and God our Father, who loved us and by his grace gave us eternal comfort and a wonderful hope, comfort you and strengthen you in every good thing you do and say.

 -2 Thessalonians 2:16, 17 (NIV)

In the book, 2 Thessalonians; Paul encouraged believers struggling in life to the point of becoming exhausted. Every person alive has experienced this and usually rest and relaxation is an important part of recovering and refocusing. That made me start thinking how I handle hard times in my life and how I handle with some people when I’m not in the mood for them. I realized that just recently, I was getting frustrated with someone who is close to me and I went in a private spot and prayed this: “God, please give me strength not get frustrated with that person. In Jesus’ name, I pray Amen.” The next thing that I knew, we were having a great day together.

Asking God for help and giving Him the control of our lives does work. Having faith in the Lord is a great thing!  Every time when I get frustrated and say that prayer, my mood does get better.

 Prayer God, please give us strength to deal with difficult times. In Jesus’ name, we  pray Amen

Thought of the Month: Having faith in the Lord is a great thing! 

Prayer Focus:   Those who are struggling in life

Money

I hate not having any income myself! In my opinion, I should be able to receive SSI. But, they said that my husband makes too much for me to get any money.
I am aggravated with this state’s policies/guidelines and laws regarding disabled people and I am not taking it anymore! I am a forty-one year old woman with Cerebral Palsy and confined to a wheelchair. I’m married to a wonderful man and I have my Associate Degree in micro computer science. I need care most of the time. I’m on Community Alternatives Program for Disabled Adults (CAP/DA). I have a nurse aide for 5 hours a day and then my husband takes care of me at night and on weekends. Last year, he went to get his Nurse Aide Certificate so he could get paid when he was taking care of me, it was not a lot, but it helped. We need all we can get because:
•    I can’t receive Supplemental Security Income because my husband earns too much.
•    Nobody will hire me because of my handicap and if I can find someone to hire me, I can’t work because of CAP/DA’s policy; if someone is on CAP/DA, they must be homebound.
Recently, Community Alternatives Program for Disabled Adults (CAP/DA) said that my husband couldn’t get paid to take care of me because one of their policies states that a family member can’t get paid as their loved one’s CNA if they have another job.

In my opinion, CAP/DA and this state need to change their policies/guidelines/laws. It is not right my husband went through the trouble to get his CNA and now he can’t get paid to be home with me. He can’t go out on “a guys’ night”, hunting, fishing or anything without me because I need someone to be with me to do everything physical for me. I can’t express it enough how I think CAP/DA’s policies are wrong. In my opinion, he should be getting something for taking care of me and for what he keeps on giving up to do that for me. Yes, we love each other very much, but we are a one income family and as many people know, it is very hard to live on one income. I would work if I was allowed to and someone would hire me or I wish I could receive SSI for my handicap; I think that Supplemental Security Income should be based on my income and assets, not on my husband’s.  I mean I’m still disabled, am I?
I’m on the destination to change the policies and laws regarding disabled people whatever it takes.
I wrote this blog because I’m worried about our money. Our mortgage is outraged. Tonight, we went out to dinner with my family and my brother’s wife has cancer; they don’t have any insurance and they have to pay for treatment so I wanted to pay for their dinner. Now, I’m feeling bad about our financials. I just wish I had my own income so we could have spending money. I’m tired of watching our money just because the government won’t help the disabled.  Anyone with me on this issue?

TGIF

Thank God it’s Friday!!!!!!! Lately, I feel I just like “Groundhog Day”. It seems like I do the same thing every day. I get up at 6:20 am, watch TV, write my blog, and have my darn tube feedings at 9 am, noon, 4:30 and 7 pm. My in-home aide comes at 9 am until 2 pm Monday-Friday. Sometimes, I read a book or do my church’s work. But still, my days seem so long. If I take a nap, it seems like I sleep for a long while, even it has been only 5 minutes. It is hard for me to explain my feeling that time is dragging or my time is off; people don’t understand. I wish I knew the cause or cure. Let me know if any of you have that feeling, problem, issue or whatever you want to call it.

Anyway, why I’m glad it is Friday?; I guess you guys are asking. On weekends, it is more relaxing for me. My husband doesn’t have to work on weekends so I don’t have to get up early and I don’t have to have an in-home aide on weekends which makes me thrilled! I would stay in the bed all the time that I could but I don’t want my husband to think that I’m lazy or see me as “a patient”. You know what I mean?

Well, have a great and relaxing weekend and I hope you all get to do whatever you enjoy to do. Take care until we meet again

My mother

Where do I start about my mother? Have you heard the song, “Complicated” by Carolyn Dawn Johnson? That is exactly how I feel about mom. I love her to death but I feel that she is overprotected and smothering me. Yes, she’s the best mother for me; she took great care of me all my life! My feelings are hard to explain. She wants to talk to me online if I’m home alone but if someone is with me, we don’t have to talk, it gets under my skin, I mean it seems like she wants to talk to “babysit” me. Plus, when we talk on web cam, she hugs herself to look like she’s hugging me; that gives me the creeps! I don’t know why. And lately, I just want to be alone and when she mentions coming to visit me; I get a “yuck” feeling. Am I a bad daughter and person or a woman who wants to live her own life? By the way, she wants to come a time a week after my in-home aide leaves or she would get me for the day; I prefer the second. I don’t like company at my house; I think because I can’t do stuff like a “hostess” should for her company. I also feel like I need to get her permission or approval of whatever I do.

The Truth of Me

Well, I’m whether depressed or going through “the change”. I’m very moody. I’m frustrated, mad, sad………….. Name it and I’m it. We just moved into a brand new house and I don’t like it at all. I feel I’m very frustrated and unhappy with my husband. I just want to sleep all the time; I don’t feel like doing anything, just relaying and watching TV. I have to make myself to do my church duties or anything. Whenever my husband is home, I just want to be in bed, I feel bad that it is all I want to do but I don’t know how to get out of that feeling. My mother blames menopause; she thinks that I’m starting to going through it. But I don’t know about that because there are some stuff that I can’t tell her about and this feeling hit me when we moved. I think I had bigger expectations for our new house than the reality. And I blame my husband; he didn’t speak up and stand up for us while we were having it built, and I begged him to go to a different building company; I had a very bad feeling about the one we went through and in my opinion, I was right! They didn’t listen to what we wanted; we had to fight them all the way. I wouldn’t recommend that company, Industrial Homes in Jacksonville, NC to anyone.

One thing I can’t tell mom is my husband doesn’t want me sexually since 11 yrs. He went to Japan in 2000 and came back a totally different person. People say that I can’t get over the time when he was in Japan. But they don’t understand; that is when my life fell apart for me. Before then, I had a loving marriage and a husband who loved the same kind of music as I do- country music. Now, he is not interested in sex- at least not with me and he listens to Rock & Roll. See, in Japan, he would talk to women online and I found out that he signed up for a Bi- emailing list. And he met up with a guy from that group. So I don’t sure about his sexual preference. Or it could because of my disability. I got a damn feeding tube right after he got back from Japan and it is so ugly!

Check back tomorrow for more about my true feelings. Be safe until then.

About me

Hi I’m 41 years old; I’m married to a loving man. Well, sometimes LOL! This blog will be about my life with CP. I wrote a novel about my life; which I really wish that I could get published. I can’t get disability help because my husband brings home too much income. OH yeah, right. He doesn’t make a lot and that doesn’t make me less disabled and nobody will hire me even with a college degree in computers. That’s no fair since I worked hard for that degree. Anyway, that’s why I want & need to publish my book or I would work at home; we need money. I love to write; especially about my feelings.

I have a hard time dealing with having a disability. As most of you probably know how it is to be “not normal”. I’m a Christian and I do my church’s monthly newsletter, weekly bulletin & website. I have an in-home aide to come in M-F; 9am-2pm; which I’m not fond of. I also have another thing that I hate; I have a feeding tube.

I watch 2 soap operas; Days Of Our Lives. I love my shows! On Days, I like Bo & Hope, Sami & Rafe, Jenn & Daniel and Mel & Maggie. On GH, I like Robin & Patrick, Jason & Sam but I also like Jason with Liz so I’m in the middle.

In this blog’s end, I’m looking for friends; especially those are married. I don’t have true friends and I get lonely and depressed. I act happy a lot around people; especially around my family.