I gotta GO!

Throughout my life I have never felt like I had a disability. However, sometimes good old Spina Bifida kicks me in the butt, literally, and reminds me that I am not invincible. I was recently in the hospital with a pretty mild bowel blockage, as far as bowel blockages go. This is a rare occurrence. I can only remember about 2-3 in my life.

When the doctor told me I would need to change my bowel regimen. I was like, oh, crap!  I got very defensive.

“I don’t have time for that.”, “I have a life. I can’t be in the bathroom all day.” The excuses go on and on.  Incidentally, I was in the bathroom for days once. It was NOT fun.   

The doctor recommended that I drink Golytly  (Go Lightly, the stuff used for colonoscopies) once a week. Let me tell you, you DO NOT go lightly!!!  I am trying something somewhat less harsh first. I have decide to take the advice of a friend and try Senna-S. Her daughter, who has a chronic issue with her bowels, uses that and it works well.  The point is, I am trying. I just don’t want to “go” from one extreme to the other. Ya, know?  

So, now that I have bared all, who else would like to share their bathroom stories?? J Thanks!

Wheelchair Etiquette

                As I have mention in prior posts, I went to regular public school from Elementary to high school in a relatively small town. In fact, I was the only physically disabled student in my school. I had some remedial classes, but that was the extent of any accommodations. In fact, I only saw people in wheelchairs when I went to therapy in Philadelphia or when we went to Spina Bifida meetings.

For the most part, I was hardly ever around other kids with disabilities who used braces, crutches, or wheelchairs. In fact, being around someone in a wheelchair was as rarity until a few years ago.

As a way to give back for all the help that my parents received in dealing with my issues, my parents would counsel parents of babies with Spina Bifida. A few years ago, I had the pleasure of reconnecting with one of these families. Their daughter Nicole and I are friends now. Initially, I was uncomfortable around her. I asked myself questions that I am told non-disabled people ask themselves when they encounter someone in a wheelchair. Do I sit? Do I stand? Do I kneel down? What is proper etiquette when interacting with someone in a wheelchair?  

Soon after we reconnected, I confessed to her that when we first met, I was uncomfortable around her because of the wheelchair. I explained to her that it wasn’t because of her, it was because of not having been around people in a wheelchair. I asked if that upset her. She said no, she understood. Since then, I have gotten used to being around her. For those in wheelchairs, do you prefer that people interact with you in a certain way? If you would like to share your experiences and preferences on this subject, I would appreciate it. Thanks!

For more information, please visit www.mobility-advisor.com/wheelchair-etiquette.html

Wheelchair IN-accessibility.

As some of you may know, I am new to using a wheelchair. I only have to use it part time, for distances. I use it up at the college to go to my classes. Now that the weather is getting better, I am going to start parking in the parking lot furthest away and wheeling over to the building where my class is.

The first bad experience I had was even before I had to use a wheelchair with any regularity. It happened when a friend of mine and I went to stay in a bed and breakfast. This incident happened when I was going through the weakness issue I wrote about that was caused by the cholesterol meds.

When we got to the bed and breakfast, the stairs to the house were VERY steep. I looked at my friend and I almost cried. How was I going to get in there? She told me not to worry. She would go see if there was a ramp in the back. There was a ramp, but it might as well have been two, two by fours next to each other. Because it was so treacherous and tiring for those who had to push me, I could only go out once a day. The only good things about that experience were the breakfasts and the sleigh bed.

Another experience I had, just this year was in Philadelphia. We had gone to see the play my niece had designed the costumes for. Before the play, we went out to dinner. When we go to the restaurant, there were steep steps out front. My sister went to ask if there was a wheelchair entrance. The hostess said there wasn’t, so I ended up having to walk up the steps. In the meantime, the hostess had found out there was a ramp I could have used.

Once we were seated, we were asked to let them know about 10 minutes before we were ready to leave. That way, they could set up the ramp. When we got ready to leave, they had to move a mop bucket and a few other things out of the way. It was a very tight space. The ramp was a rickety thing butted up against the side of the building. We even had to steer past a couple employees outside smoking. The good thing about the experience was that was the best burger I have ever had! All things considered, I would go back if only just for the burger.

 I would appreciate it if those who read this would share any experiences they have had.  Thanks!

Why Won't They Listen?

Okay Folks, time for a rant! What is WRONG with people?? Just because we are in wheelchairs, us braces or crutches, or because we walk differently doesn’t mean we are stupid or helpless! A lot of us are capable of a lot when given the chance. Some of us can drive, go to college, hold jobs, raise families, and MUCH more. We can do it!

            I have read things on Facebook that bother me. I have read that people with disabilities, specifically Spina Bifida, who have jobs are being let go for unjustified reasons. Some who volunteer are being asked to cut back their hours. I would think that they places where people volunteer would appreciate the help. Family members are sheltering us or prohibiting us from trying to learn things so we can achieve a sense of independence. I would think people would do what they could to help their child/family member be as independent as possible.

            Some of us are ready, willing and quite able to learn things to increase our independence in areas such as cooking, cleaning, money management, how to acquire and take public transportation, and time management, just to name a few. The possibilities are endless. We just need to be given the chance. In some cases, we just need to be shown how, not because we can’t do it, but because we have never been shown how. Don’t get me wrong, we love our lives, we just need them to accept who we are and to give us a chance to prove we can do things on our own.

Does anyone have any ideas how to get these people in our lives to help us achieve these goal? Please share.

You are SUCH an inspiration.

You are SUCH an inspiration. How many time have we as disabled people heard that? How does it make you feel?

For me, I get it, but I don’t. I understand that people look at people with disabilities and think, "Wow, that’s great that he or she can do that." Personally, I don’t see myself as an inspiration. I am just living my life just like everyone else, I’m just doing them in a different way. Yes, I have to do them somewhat differently than you, but I can still do them. You can drive. So can I. I drive with hand controls because my legs don’t work like yours, but I can still drive. If it turns out I can’t drive, I find an alternative. You can run in races. I may not be able to run, but I can take part in a wheelchair or a hand bike. You can cook a meal for your family. So can I. Again, I might need things in the kitchen modified such as countertops, or the stove or refrigerator lowered to where I can reach it better, but I can still do it! I don’t think of it as inspiring, I just think of it as life.

My independence as a person with a disability, is very important to me and I will do everything within my power to achieve and maintain that independence. As I said in previous posts, I have always been encouraged to do things on my own. Some people look at it as inspirational. I look at it as my life, and I just do it.

If there was something that I couldn't do or didn’t know how to do, I asked someone to either let me try it or at least show me how to do it. If I could do it the "proper" way, or in a modified way, great! If not, I moved on. Most of the time however, for the things that were important to me, I found a way to do them.

I look at it this way. If I can motivate someone to at least attempt things that they wouldn’t normally attempt to do or to at least try, then I have succeeded. I would rather someone tell me I motivated them more than I inspired them. What are your thoughts?

　

　

　

　

　

　

　

　

　

　

　

Leave Me Alone!

I would venture to say that a lot of us with SB and other disabilities aren’t able to live alone for various reasons, whether it be financial or physical or whatever. I know that Im not able to. Mine is mostly financial.  Plus I do like having someone around to keep me company. But there are times when you just want to be alone?

I have a roommate/friend, who lives with me in my family home. He moved in about a year after my father passed away. We have our ups and downs, but for the most part, we get along very well. People who know me will find this hard to believe, but there are times when I am not the easiest person to get along with, shocking, I know! We are also like Oscar and Felix. I tend to be the slob, again, shocking, I know!

My roommate is very easy going. Doesn’t seem to let much bother him. I am the one who worries and freaks out if things don’t go the way I think they should go. He just looks at me as if to ask, “Are you done now???”

There are also times when I just want to be alone.  When you live with other people, this can be an impossibility. Granted, it’s not like I would do anything differently with him not here, but it’s just nice to be alone once in a while. I remember as a kid there were always other people around, my parent, my siblings….

If I wanted to be alone, I had to either go to my room or, once I got my driver’s license, I could go out of the house to be alone. That seems to be the way it is now too. Believe it or not, I have found my solitude at the gym. Yes, there are people around, but there are no distractions. I also like riding the lawnmower. I can think things through while I do these things. They are calming to me. I really enjoy them.

Are you able to get away from people? How does it feel? What do you do?

 

 

Melt Down!

This post is kind of a follow up to my post on Statin medications. However, this is from my emotional point of view at the time. For those of you who have read the post on Statin medications, you might see/read references.

 

            A few days ago, in one of the Facebook groups I am in, someone was having a “I Hate Spina Bifida Day”. There was some discussion about his feeling, and it was decided that he was in fact entitled to have an “I Hate Spina Bifida Day”. This is what prompted this post.

 Several years ago now, I was taking a cholesterol medication called Symvastatin. I had a severe reaction to it. In the commercials for this medication, it says “May cause muscle weakness.” They aren’t kidding. I cannot prove it, but I believe that the medication, along with Spina Bifida, caused me to have a, worst case scenario reaction.

I had to use a walker to get around, or scoot around on my butt. My fingers would not fully extend. When I started going to PT, under my doctor’s advice to keep my strength up, I couldn’t even curl two pounds. Everyday tasks such as making a pot of coffee, or doing laundry became nearly impossible. I could barely sign my name to a check.

I was unsure how long this would last. Would it be pertinent? Would I deteriorate even more? My heart is a muscle too, would that be affected? My concerns were endless. My siblings even suggested that I look into making wheelchair modifications to my house in case it came to that. I told them I wasn’t going to do anything until my doctor told me it wasn’t going to get any better.

I kept in contact with my doctor, who referred me to a neurologist to see what he thought. When I called to make the appointment, they told me it would be over a week before I could get in to see him. I went ahead and took this appointment, but asked if they could call me if they could call me if there was a cancellation because I was very concerned. They said they would.

After I hung up the phone, I went into a COMPLETE MELTDOWN. I slammed the phone down, I screamed, I cried, I cursed, I SPAZZED! I had had enough. I was tired of it all and wanted some answers!

After my meltdown, the phone rang. It was the doctor asking if I could come in the next day. I was very relieved!

So, in conclusion, YES, it is okay to have a meltdown, an “I Hate Spina Bifida Day”, or whatever you want to call it. Have any of you had one of these days? How did you handle it?