No Gasoline Needed!

One of the good things about living life in a wheelchair is that I don’t have to spend any money on gas. I am not driven a car in about seven years and to tell you the truth I wasn’t really crazy about driving in the first place. But what I really I do miss, however, is getting to the place I want to go, when I want to go there and how I want to get there.

The have to rely on someone else really really sucks. I am, of course, blessed to be in an area where there is public transportation for wheelchair ridden and disabled people. The Para-transit bus arrangements have to be made at least a day in advance and then generally the bus comes pretty much on time and usually you have to take a circuitous route and eventually get there relatively intact. you just never know how your ride is going to go.

I guess like most of the general population there is quite a mixture of bus driver personalities. You would think that one of the top criteria to be a driver for disabled people is strength, patience, and being a people person. But then again you would be wrong… I’ve had a couple of bus drivers who really would be better off being a prison guard in a high-security institution or perhaps one who collects snake venom for antibodies.

I had one bus driver, bless his heart, who was so obese he couldn’t even lean over to connect the safety chains on my wheelchair. It took quite a bit of time and I was very uncomfortable not only for him but also for me but he finally got her done. by the time he got that part done was sweating so profusely I thought he was going to have a heart attack and I was going to have to be the one to drive him to the nearest hospital! I really did feel bad for him; he seems so terribly uncomfortable even getting in and out of his driver seat.

I would so much rather be an enabled person and pay those exorbitant gas prices! I would do it willingly and with a smile. Driving really is a privilege. It’s like everything in life I guess. You don’t know what you’ve got until you lose it. Oh, How I would love to have that back!

Don’t forget to check out the book that I have written Potty Mouth now for sale on Amazon, Barnes & Noble, Author House and other sellers of books!

http://www.amazon.com/book

A Relationship With My MS Self

Famous painting by Pablo Picasso Head of a Woman. 1907. Oil on canvas. Barnes Foundation, Lincoln University, Merion, PA, USA

My book Potty Mouth is now live on Amazon!   http://www.amazon.com/books-used-books-textbooks/b?ie=UTF8&node=283155  Holy Mother of  God!  Finally. It first went on sale on World MS Day.  Coincidence? I don’t think so! I am so excited.  The e-book will not be for sale for 3 weeks or so.  Don’t know why.. not up to me. My marketing director (I can’t do this all alone) has given me an assignment:

My question for today…How has multiple sclerosis affected your relationships with your family,   your friends, your husband and your children?

I don’t even know where to begin!  I am in a serious mind fog–I can’t think straight, I can’t even see straight. so I will to start from the beginning. My relationship with myself.

MS has affected me since I was in my late teens so of course I have changed and grown so much over the years. when you have MS and start  life in a wheelchair, as I have, you begin to seep into yourself. I have always been a reader and I started to read all kinds of self-help books, spiritual books, inspirational books and anything to help my spirit grow. Or rather to help me find my spiritual self. MS has helped me to get closer to God. So in that sense MS has made me much stronger; a more empathetic person and someone who sees a little bit of good in everyone.

I didn’t wake up one day with an epiphany. I did not see the form of Jesus on a bagel or have a dream where God spoke to me of the meaning of life. Spiritual growth is a long and painful path that goes on until our very last breath on earth and what incredible lessons I learned from the hardships of multiple sclerosis. One of those lessons is how to love myself in spite of my rickety, misshapen body that won’t listen to me when I tell it to, yell it to, scream and cry and beg it to.

And so the lessons I learned help me get on with my MS life.

MS has surely affected my 2 grown children. They’ve known I have the beast from the beginning.  The stumbling, falling, trembling etc. They knows the external struggle on the outside only  and do my damnedest to keep as much from them as possible, being the mom and all.

My son, Ryan lives and works in Houston and isn’t here for the day to day life of an MS sufferer.  My daughter, Lara is my angel sent from heaven.  I live with her and we have learned how to be kind to one another and MS has brought us so close. She learns much  from me. and I from her.

Since I started to write Potty Mouth she has gained such respect for me and is very proud.  When  she first started to read the bo0ok she was so afraid that she would not like it and she was terrified about how she would handle it. Lo and behold she loves Potty Mouth even though it was tough to read some of the heartbreaking things she never knew.  And so MS has brought me much closer to my children.

That’s all I will write about relationships today. Next will be to tackle my  ex-husband.It’s a really tough one…

All of Potty Mouth is my story, my relationships and how I have coped and how I carry on with what I have learned.

 

http://www.amazon.com/books-used-books-textbooks/b?ie=UTF8&node=283155

…

Two Gorillas Falling Out Of Like

http://www.thepottymouthbook.com

You can insert any name that you like to be about caption. I., personally would not use the word retard because I find it very offensive but since it was already attached to the photo I left it in.I prefer the word idiot, jerk,dill weed, and my favorite asshole. I love these two very thoughtful  gorillas. Just two Primates in love. And now they don’t like each other very much. Just another example of Face Book getting in the way of a perfectly fine relationship.

Take a look at the website for the book that I have written entitled Potty Mouth with the subtitle of  “A woman disabled with multiple sclerosis meets life’s challenges with courage, wisdom and a profane sense of humor.” That woman would be me and if you wish to learn a little more about my book and about me please take a look at the link below. Thank you very much.

http://www.thepottymouthbook.com

A Place Where Multiple Sclerosis Doesn’t Matter

I’m looking for a place where I belong in this world, a place where Multiple Sclerosis doesn’t matter. I am antsy and constantly looking for something to keep me busy so that I feel as though I have accomplished something during the course of a day. Being paralyzed and in a wheelchair, I am no longer able to work. Some days it’s a chore just getting up in the morning and by mid afternoon I’m exhausted and need to lie down.

I have written a book entitled Potty Mouth which is in the process of production. I sent it off to an editor. I found the book cover that I’m interested in and I am waiting to hear from the artist. I’m reading and looking online how to blog, how to submit articles, how to write a newsletter, and how to post on social networks and I am doing it all in order to find my self-worth and my self- respect which I seem to have lost along the way. I probably, like so many things, dropped them on the floor and ran over them with my chair and have broken them all to hell. MS is a bitch on steel wheels.

I am lonely and it sucks and I am constantly looking for something more.

Sad and gloomy are not words I would use to describe myself. I am usually upbeat and optimistic although once in a while I am teary, weary, and worn. Today is one of those days and I don’t want to waste time not being present. If I look at everything as it is right here and now, I am fine (and dandy); I am busy, and working on my writings , and when my mind is active I am not even thinking about the things that are bothering me. The spasms and pains and depression are diminished at the moment and I am more than an MS patient I am Renae Clare; a funny, active, woman/writer.

It’s been a good week and I got lots of things accomplished. Tomorrow promises to be another good day so I will put on my happy face and take my medication and rise up against all of the symptoms of Multiple Sclerosis and see if I can find a place where MS just doesn’t matter.

A Tribute to Do…

A Tribute to Dolly Parton

 

 

 

My mother had multiple sclerosis ever since she was a teenager. Her life was not an easy one and towards the end she spent a lot of time in the hospital. everyone knew her and everyone loved her. She was really a very reserved and private person and  in spite of her illness she rarely complained and was very funny. She died 15 years ago at the age of 66 from cancer and I as her daughter, am very much like her.I also have had MS for the last 40 years,I try not to complain too much and my sense of humor carries me through many obstacles. Here is just one story about my mom, in her honor, and I am sure that she is laughing with us. It is a tragic story and at the same time it touches your heart.

 

There was one time when my mom had a grand mall seizure lasting over a half an hour and when she finally came out of that seizure she thought she was Dolly Parton! She was singing Dolly Parton songs and speaking in a Dolly Parton voice and flaunting her Dolly Parton cleavage. During those moments she made everyone so happy because it was so unexpected and so not like her and because it came out of nowhere.  It was just really an honor to be a witness at my mother’s debut. All of the staff came in to see her and interact with her and she even signed a few autographs. Later on, when she was told what she had been doing she was mortified and felt she had made a fool of herself  but I think in those moments she really found herself, she found herself completely uninhibited and totally joyful and making everyone around her delight in her presence.

 

 Unfortunately that part of my mom that was  Dolly Parton was never seen again but in that short amount of time she gave a rare performance for all of her fans and my mom was the biggest Dolly fan of all.

Dr. Paynes Questionnaire

I’ve been seeing a pain doctor. for about the last year now and she has been of great help to me. I didn’t even know they had doctors whose specialty was pain but she has a very busy office and I think that others may be in worse pain than I am. Of course that was before I started to take the medication. It’s pretty strong stuff so she makes sure that I see her at least once every three months so that neither one of us lands up in the big house for drug dealing or possession. I like to call my pain Dr., Dr.Payne. Never to her face, of course, but just in general when I’m talking about her. She’s actually a very good doctor so I shouldn’t be making fun of her and I’m sure the gods will punish me in one way or other.

I am entering a form below that Dr. Payne gave me before I became her patient and I thought it might be of interest to you in finding questions to ask your Dr. or in finding a doctor to help you deal with pain. Some of the questions I actually find funny but then you be the judge. Check out question number three.

http://www.thepottymouthbook.com/

The following questions are given to patients who are on or being considered for medication for their pain. Please answer each question as honestly as possible. There are no right or wrong answers.	NEVER	SELDOM	SOMETIMES	OFTEN	VERY OFTEN
	0	1	2	3	4
1. How often do you have mood swings?	º	º	X	º	º
2. How often have you felt a need for higher doses of medication to treat your pain?	º	º	º	X	º
3. How often have you felt impatient with your doctors?	X	º	º	º	º
4. How often have you felt that things are just too overwhelming that you can’t handle them?	º	X	º	º	º
5. How often is there tension in the home?	º	X	º	º	º
6. How often have you counted you pain pills to see how many are remaining?	X	º	º	º	º
7. How often have you been concerned that people will judge you for taking pain medication?	X	º	º	º	º
8. How often do you feel bored?	º	º	X	º	º
9. How often have you taken more pain medication than you were supposed to?	º	º	X	º	º
10. How often have you worried about being left alone?	X	º	º	º	º
11. How often have you felt a craving for medication?	X	º	º	º	º
12. How often have others expressed concern over your use of medication?	X	º	º	º	º
13. How often have any of your close friends had a problem with alcohol or drugs?	X	º	º	º	º
14. How often have others told you that you had a bad temper?	X	º	º	º	º
15. How often have you felt consumed by the need to get pain medication?	X	º	º	º	º
16. How often have you run out of pain medication early?	º	X	º	º	º
17. How often have others kept you from getting what you deserve?	X	º	º	º	º
18. How often, in your lifetime, have you had legal problems or been arrested?	X	º	º	º	º

	NEVER	SELDOM	SOMETIMES	OFTEN	VERY OFTEN
	0	1	2	3	4
19. How often have you attended an AA or NA meeting?	X	º	º	º	º
20. How often have you been in an argument that was so out of control that someone got hurt?	X	º	º	º	º
21. How often have you been sexually abused?	X	º	º	º	º
22. How often have others suggested that you have a drug or alcohol problem?	X	º	º	º	º
23. How often have you have to borrow pain medications from your friends or family?	X	º	º	º	º
24. How often have you been treated for an alcohol or drug problem?	X	º	º	º	º