Why Can't I Make Them Understand??!!

Those of us who are chronic pain sufferers and/or are disabled, have often asked this question.  We want other people to undertand what we are going through. We want them to understand that most of the time our pain is so severe that we can hardly think straight, let alone function.  We also want them to understand the fear and frustration we feel at the loss of  body functions.

But do we really want them to understand? Because the ONLY way for them to really know, is by suffering what we do.  Do we really want our friends and loved ones to go  through all of that?  Of course not. At least I wouldn't.   I would not even wish that on my worst enemy!   So be glad that they can't truly know what your day to day life is like.  Just love the ones who do try to understand.

But also love the ones that  shy away or say something inappropiate or hurtful. They don't mean to be hurtful. They are just scared and don't know what to do. And instead of always expecting others to understand what we are going through; let's try instead, to understand what it's like for them.

I've Been Betrayed Yet Again!!

My betrayer is my body. The problem began last night as I was readying for bed.  To leave my bathroom, it is easier to back out and then back my chair to the left in the hallway. Then I can go forward. Well last night, I did fine coming  out of the bathroom, but just as I was backing my chair into the hallway, my usuable hand,  the one that works the chair controls, had a severe spasm.  Causing hand to jerk hard on the toggle switch....sending me crashing into one of the walls in the hallway. It caused a hole in the wall. True, it is very small....but still it made me so mad!!  Today, I've managed to knock over a lot of stuff, including hot coffee. The trash can was next. And of course it  had to be filled to overflowing. Over it went sending it's contacts scattering  across the kitchen floor.  To make it even worse, there was wet coffee grounds in it . I also knocked another cup of coffee off of my little table on the back porch, when I bumped into the table. The flies sure have been loving that!!  And the list of catastrophies go on and on.  Oh well, just one of those days. Tomorrow just has to be better.  ;)

My Oasis

There is a newly built gazebo here at the apartment complex, where I live. It sits over a pond. There is a long pretty bridge that you have to cross over to get to it. (the pic below, shows what the bridge looks like from my view in my w/chair.)

I LOVE it out here in the early mornings, or late afternoons. Then there is usually a most lovely breeze blowing. Here I can listen to the




tranquility of a small water fountain out in the pond. And I usually have the place to myself. It is here that I like to read, or play on the computer. But of all, it is a place of solitude where I can converse with Jesus. I know that he is always with me wherever I am. But ever since childhood, I have always felt closest to Him in the outdoors.  


My day started out rather badly. I awoke from a most terrible dream. You know, one of those that you can only vaguely remember the dream and the boogey man within it. But it kind of sticks with you for a long time after waking up. Sometimes even staying in the far reaches of your mind all day. Also I had a bout of depression going on. But it was more than depression. It was more like an uneasy, fearful, and sad sensation, that just didn't want to leave me alone. But then I realized who was behind it. The devil ( whom I generally refer to as the "old man"). So I asked Jesus to please take care of it for me. And He did. I felt like gettng outdoors for a bit, so I first went out there, but it was too hot for a change. So I went to the covered picnic area near to the bridge.

There was a nice breeze there. The next thing I knew, several of my neighbors  saw me and decided to join me. We had the best time!! I really enjoyed their company. And they seemed to enjoy mine.

                    ~~~~~~~~~~Did You Know?~~~~~~~~~       

Do you find it hard to believe that the One who made everything keeps your name on His heart and on His Lips? Did you realize that your name is written on the hand of God (Is. 49:16)?

The Medical Health Care System Stinks!!

I am a living, breathing human being, who deserves the same respect as anyone else. I am disabled and in a wheelchair......I also have only medicare for my health insurance. And because I don't have any other source of insurance, and only have disability payments as my income, I get treated VERY badly by the health care system!! Case in point is what happened to me yesterday. But first, let me bring you all up to speed. Right after my neurologist put me on a med for my M.S. ( Multiple Scerlosis), he became ill. It has now been 6 months since then, and I have had NO follow up!! I've had some reactions from this med. After a reaction that made me break out in huge blisters, I called my Dr's office and spoke to a nurse. I assumed that she asked one of the Dr's who are there to take care of my Dr's patients. She told me to go ahead and keep take the injections. So I did, and the last reaction darn near killed me!! And I do mean that literally!! So I stopped taking it, and called my neuro's office. Only to be told that there would be no dr's available for two weeks!! So I was just left hanging, not knowing what to do. So I called my reg. medical dr and explained what was going on. He made an appointment for me with another neuro, that was a great deal farther from home. The appointment was yesterday.......This so called Dr was very rude, unprofessional, and unethical!!!! And yes, I mean you, Dr John Spiegel!! He told me and my friend who took me there, that he wasn't taking any new patients......I was stunned and said " Well if I had known that I wouldn't have wasted my time. Why did you not say so, when my Dr called for an appointment???" he just gave a short laugh. He then said that he didn't think that I have M.S. based on a report that had been faxed from my reg neuro's office. I asked to see it.......and guess what?? It clearly showed that I have M.S. lesions, or "plaque" on my brain. And I said "Are you blind?? Or are you unable to read either?? Again, he gave a short laugh. I looked back down at the report and then I realized that it wasn't even the right report!! This one was from years ago. The one that I had before my Dr put me on that med was of my brain AND my spine. That one should numerous large plaque on my brain and my spine. I was trying to explain all this to him, but he kept trying to talk over me, but I wouldn't shut up until I was finished. lol But what he said next made me reach a stage that is very uncommon for me. But I couldn't help it. I've been jerked around and treated so badly by the health care system, that what he said was the very last straw. He said " You look perfectly healthy to me." Now, you see I am used to none knowledgeable people saying that to me. And I hold no grudge, because I know that they just don't know. But a Dr saying this???? One who is supposed to know all about M.S. and the many other diseases that make people look healthy on the outside, while all heck is breaking loose on the inside!! I looked him right in the eyes and said " You will have to forgive me for crying, because I do that when I am beyond furious!! He looked at me a moment then dropped his eyes to somewhere on his desk. Then again that stupid little laugh. At this moment I can not remember my exact words that I said next. They got lost somewhere in the fury. But I told him off big time. Now normally I am not a violent person at all. But I do believe at that moment, that could I have reached him, I would have slapped the taste right out of his mouth!! No, I am not proud to admit that, but it is the truth. And I am still very angry, but I feel that it is a righteous anger. So I know that God won't hold it against me. I have been shoved around and not given the proper care for years. I can't even get medicaid or any help whatsoever. Not even in home care.  Oh after I told my friend to get me out of there, he then contridicted himself, by saying that I had a lot of medical problems and am a very sick person.  And that I needed a specialist. I just glared at him and told my friend again to get me out of there. And we left. Is there anyone out there that could point me in the right direction to get help? Does anyone know how to get in touch with the M.S. Society? Or know what, if anything they could do to help me?  Any info or feedback would be greatly appreciated.

A Bull In A China Shop

Sometimes.....well ok a lot of times, The M.S. causes me to be extra clumsy.  I knock things over with my hand because, like I said I get very clumsy and frequently have tremors. But the biggest messes that I make are with my electric wheelchair. Medicare only allows you to get a standard one first. Now.... I am a very tiny woman, so I look ridiculous riding around in it.   I call it my limo. lol!  But in August I will have had this chair for five years. So medicare says that I can have a new chair then. And it will be customized to my size and to my needs. They said I can have any color that I want, so it will be blue, my favorite color!!  And also it will have all terrain wheels.  I am home bound most of the time. But I would love to get out in my backyard without getting stuck. And be able to ride around the apartment complex when I feel up to it.  Then I will be able to get up closer to stuff that I want a good picture of. I' ll be able to ride over any kind of terrain. Oh, I've been told that the chairs with those kind of wheels require a lot more power. So when I get it, all I can say is "Look out world, here I come. Move it or lose it!!" Vrmmmm!!  lol!! 

Living The Life

This blog is about me, my life, and living with M.S.  I have many illnesses, but I will talk about M.S. the most. I will post about other things at times, not just about being ill. :) I decided to start this blog for one main reason. And that is because I need a place where I can say what I'm going through or feeling, without the worry of upsetting family members. You see, I've come to the part in my life where I require a caregiver. I'm unable to walk at all, so now my wheelchair has to be my legs. I only have the full use of one arm. But I am still able to care for my personal needs. And I have astounded many with what all I have learned to do myself. But there are many things, no matter how hard I try, that I just can't do. 
My caregiver also happens to be my mom. I can't talk openly to her or around her, because she gets terribly upset. Now, as a mom myself, I do understand what this must be like for her. No mother wants to hear about her child's incurable diseases. It's bad enough that she has to see me go through the awful pain and see me physically deteroating right before her eyes. So I do understand. But I need a place to talk about things, you know? And I am hoping that others who are going through or have gone through the same things, will feel free to comment. Also, anyone. whether they are sick or not, will feel free to ask questions. More later.