Booby Trap

I went for my annual screening mammogram on the very day that new guidelines were announced. According to the revision, I don't have to have the test done until age 50 and then only every other year. I choose to ignore this suggestion and continue doing what I've been doing as long as my insurance company continues to pay for it. It is my personal belief that women with MS have a responsibility to be vigilant about routine testing. Our disease brings enough uncertainty and I like the peace of mind knowing that nothing else is wrong. So, I am willing to deal with the awkwardness and discomfort of getting a mammogram.

You expect that the medical community would be better equipped to interact with the disabled than they actually are. The following scenario happened to me the first time I went for a screening.

    Tech: Miss Mayo, could you come with me?

I follow the tech in my wheelchair, my aide pushing me. I am handed a gown and given the instructions to put it on with the opening in the front. The tech returns several minutes later.

    Tech: Can you leave the wheelchair over in the corner there and stand here by the machine?

    Me: No, I can't stand, let alone walk.

    Tech: Well, I don't know how we are going to be able to do this.

    Me: I'm going to have my aide wheel me over to the machine and you're going to lower it down.

    Tech: I'm not sure that it goes that low.

    Me: There's only one way to find out.

    Tech: Is there any way that you can raise up the chair?

    Me (inner voice): Sure, I have a magical, levitating chair just like Dr. Xavier in X-Men. Me (audible): No, it doesn't.

    Tech: And you can't stand for even a minute?

    Me: That would take a miracle since I am a paraplegic.

Somehow, we are able to get the films that we need although the tech keeps bumping my knees into the machine while adjusting me. My aide also gets to don a lead apron so that I can remain pressed into the machine as it squishes me. I wait for the films to be read while I'm there in case anything needs to be retaken. It's a better use of time for me to wait around vs. having to return another day and do it all over again.

As unpleasant and ridiculous as that experience was, I like to think that I might have made it better for the next person in a wheelchair who has a mammogram done at that facility. I guess I appreciate that people give me the benefit of the doubt and think I have more mobility that I actually do, but I wish they would assume the worst and not make me feel bad when I can't stand or even move my legs. After all, I'm actually not trying to be difficult for a change. Stubborn, disabled people like me must keep challenging the medical community to provide us with the same care as the bipeds. I know that as our population ages, there'll be a lot more people with mobility impairments. Until then, I will continue to earn the nickname, "hell on wheels."

    

Band of Bothers

Spasticity is a common MS symptom that manifests itself an uncommon ways. For example, I experience a band of tightness around my rib cage most every night. It's as if someone took a belt and pulled it as tightly as possible. I can actually feel the difference between the muscles in spasm and the normal ones surrounding it.

My neurologists theorize that the problem is caused by thoracic lesions on my spinal cord that are too small to show up on an MRI. From my perspective, I don't care as much about why it happens as I do about how to remedy the situation. The good thing is that it seldom happens all day. I notice it most when I'm trying to fall asleep at night. My approach is to combine traditional and alternative medicine to help make me comfortable. I take 20 mg of an anti-spasmodic medication called Baclofen along with 50 mg of an older, anti-depressant called amitriptyline that reduces neuropathic pain. On top of this, I add deep breathing and relaxation techniques. By trying to slowly expand and contract my rib cage, I can get my muscles to stop contracting as hard.

General books on MS that I've come across describe this phenomenon as the "MS hug." I can assure you that it doesn't feel like any hug I've ever had. I am thankful that mine is lower than where the bottom of my bra sits. Other women have told me how awful that is. They avoid wearing their boulder holders unless they're out in public. It's bad enough to have MS, but who wants to explain that your boobs are saggy because wearing a bra is far too painful. That reminds me that I had a mammogram yesterday, but that's a whole other story.

A Walk in the Crowds

Perhaps he [the patient] has the happy kind of MS with walks, balloons and smiling people being pushed around in wheelchairs. House, MD

The MS Walk was this weekend and I went to turn in the money I had collected and be pushed around. Even when I was still walking, the event route was too long for me so I ended up greeting people at the finish line. I felt like a fraud, especially the year that I my walker and I ended up on the MS Walk brochure and poster. It really underscored the irony of the event.

I have been involved with the MS Walk for almost as long as I've lived with the disease. It is definitely an opportunity for people watching. I can pick out the newly diagnosed with their family, friends and coworkers easily. They approach the task with great determination and enthusiasm. They believe they can fight MS and win because they haven't experienced the worst the disease has to offer. Over time, they'll discover that MS is a lifetime commitment and the Walk is an annual event. It's hard to come back year after year knowing that your disease is slowly progressing and there is a slim chance of a cure within your lifetime. Personally, I have amassed a lovely collection of tee shirts and other paraphernalia and these people will find themselves in the same situation. That's not being negative; it's just being practical.

Another smaller group that stands out at these events is the "MS Victims." They are joyless souls slumped in wheelchairs with atrophied arms and legs in uncomfortable-looking positions. They are unkempt and disheveled with dirty hair, teeth and shapeless clothing. They never smile and their eyes are cast downward not making contact with anyone as if they are ashamed of their condition. Unlike the newly diagnosed, there aren't a lot of people with them, only someone to push the wheelchair. Statistically people with MS are supposed to have a near-average lifespan, but these people look as if they are not long for this world. If their appearance is any indication of their quality of life, an end to their suffering seems welcome.

As for me, I can't share the overwhelming optimism of the newly diagnosed or the fatalism of the victims. I go to these events to be myself. I think that it's important for the able-bodied participants to see somebody like me coping while retaining my personality. My condition has given me a lot more joke material. I revel in seeing people's reactions when I yell something like, "move over, cripple coming through." When people compliment me on my purple wheelchair, I love to say that I think it is important to accessorize. After an encounter with me, I know that people have to rethink their preconceptions of the disabled. Just because my legs are weak doesn't mean that my personality isn't strong.

The Procrastinator

Here is my contest entry that I submitted twenty minutes too late. The prize was a Kindle 2 and three years of free software updates. Oh, well.

Dragon to the Rescue

Damsels in distress are usually rescued by knights in shining armor, but my hero is a dragon. Dragon Naturally Speaking has enabled me to continue using my computer in spite of a progressive disability. I was diagnosed with multiple sclerosis (MS) twelve years ago and my disease has slowly taken away my mobility and independence. Because of MS, I can no longer walk, work or stand and my fine motor skills are also affected. Typing has become particularly difficult because I find myself only able to use one finger of one hand quite often. This is okay if I am just checking emails or surfing the web but when I want to do more, it's Dragon to the rescue.

With my trusty Dragon, I can reply to my emails, participate in social networking sites such as FaceBook, manage my family's website, solicit donations for the MS walk and even keep a blog about living with MS. Also, I am a political activist writing to my senators and congressmen about legislation that affects me and everyone else living with the disease. I could not possibly do all these things if I had to rely on my diminishing typing skills.

Dragon helps me stay connected to my friends, family and the world. I can't imagine my life without it. In this age where technology is creating smaller and smaller devices, I often feel left out because I can't use them. Dragon allows me to fully participate in the online world despite my physical limitations. I am no longer a "damsel in distress." I am an empowered woman riding through cyberspace on my mighty dragon!

Aide-ing and Abetting

Yes, I've neglected my blog lately but I have a very good reason, I'm breaking in a new personal care aide. Let's just say that things are not going very well. What I had hoped was new-job jitters has turned out to be standard operating procedure for this aide. Safety is a fundamental part of a successful client-aide relationship and after being dropped on three separate occasions, I do not feel safe. Once again today, I found myself on the bathroom floor calling my husband to rescue me. Fortunately no one was hurt, but enough is enough. I feel that I've been more than fair with this woman and if she cannot perform the basic duties of the job, then I need to find someone else. I didn't enjoy the interviewing and screening process I had to go through, but I'm willing to do it again.

Making me less willing to try and make things work with my current employee is her manner when interacting with me. For example, I wear paper or disposable underwear, not "diapers." I also don't pee-pee or boo-boo; I have to go to the bathroom to use the toilet. It's bad enough that I need help with basic bodily functions. I don't like being treated like a three-year old. After all, my mind still works pretty well; it's my body that has betrayed me.

The National MS Society does have an informative brochure on hiring help at home, but it focuses more on the psychological issues of having to admit that you need help. I am way beyond that stage. I need to know how to find and retain qualified aides. You would think that in this economy it would be easy to find someone, but there is a national nursing shortage. Unless you can offer a lot of money, it's hard to find someone.

It is very difficult for a control freak like me to deal with a situation like this. I am continually frustrated by my need to rely on others for everything. The knowledge that I have lost my independence forces me to be patient in ways I didn't think possible. It even makes me try to endure less-than-perfect care because it's better than nothing. I have to admit though that I must draw the line when my safety or dignity is compromised and this time that line has definitely been crossed.

April Showers

My new aide was doing okay until Wednesday. Wednesday was one of my shower days and despite earlier successes transferring me from the shower chair to my wheelchair, this time I wasn't as lucky. The aide didn't exactly drop me, but I didn't make it to the wheelchair either. Instead, she ended up sliding me to the floor when she couldn't get me in the chair. There I was on the floor and naked of course like most people are when they come out of the shower. No one was hurt, but there was the dilemma of how to get me up and there was no way that my aide was going to do that without help.

If there was ever a time that I just wanted to leave my body, this was one of them. I'm lying there naked on the floor and trying to keep my aide calm while I think of a solution. Shouldn't I have been the one who was upset? Anyway, I decided that the best course of action was to call my husband at work, have him come home and get me off the floor. Now my aide is really freaking out because she has not met my husband and this is not the way that she wanted to do it. By this point, I've decided that she really doesn't have a say in how we precede. I have her give me the phone and I dial up my husband while staring of the ceiling. When he answers, I calmly explain that I need him to come home because I ended up on the floor after showering. I emphasize that I am not hurt, but don't want to spend the rest of the day in my current position and location.

Doug comes home and finds me right where I said I'd be, then he takes over. Just like me, he's not really listening to whatever my aide thinks we should do because she's the one who created this mess in the first place. He decides that the best way to handle it is for him to get me up and then she can slide the chair underneath me. I assured Doug that we could take it from there because I just roll on the bed to get my clothes on. He seemed a little reluctant, but he left and the rest of my day was mercifully uneventful.

I should explain that I have a fairly small bathroom with a narrow door opening and it lacks a roll-in shower. At the time we built the house, we thought that we were being practical by buying a ranch and having a shower instead of a tub/shower combo. We didn't know that I was going to lose the ability to walk entirely. Up until now, this hasn't been a problem for my employees but this one is older and lacks much physical strength and endurance. I was drawn to her because of her experience on paper and the unlikelihood that she would have to leave because she was pregnant. I guess I needed to stick with young and fertile?

As you can imagine, I kept going over what it gone wrong and how to correct it. By the next time I was showered, I had figured out my plan of action and I took control of the situation. I told my aide what were going to do and didn't let her try and figure out how to do it herself. My attitude was this is what has worked in the past for me and this is what you are going to do. I really didn't care that she had 27 years of CNA experience by this point; she only had a few days of Lydia experience. I'm glad to say that everything went without incident today and I think that we should be fine. It amazes me how flexible and patient I have become although I will put up with a lot not to have to go through the process of finding another caregiver. However, dropping me is totally unacceptable and if it happens on a regular basis, then that person needs to find another job. After all, I am paying these people and I want to get my money's worth.

Go Orange!

Yes, I meant "orange." The "Go Red" campaign for women's heart health was in February. This week is MS Awareness Week and I'm doing my part to let the rest of the world know about this awful disease. I know that it's fundamentally wrong, but sometimes I find myself with a case of "disease envy." After all, MS gets a week while breast cancer and heart health get an entire month. Also, there are things that you can do to reduce your risk of breast cancer and heart disease, but there is no way to prevent getting MS currently. Finally, the color from breast cancer is pink and the color for heart health is red. What does MS get stuck with? Orange and I don't know many people who look good in orange. I know that I don't.

I understand that this whole thing may seem very trivial, but I've given it some thought because the National MS Society recently rolled out an entire new marketing campaign and logo. The majority of the expense for the advertising agency was donated, but making a big change like that has a trickle-down effect on a non-profit organization. The new logo meant web site changes, business card and stationery changes, new rubber bracelets in orange, etc. While the Society has a good track record in terms of overhead versus money supporting the cause, I still question the return on investment of a new visual image campaign. I even had issues with the new slogan, "join the movement." Considering that many living with multiple sclerosis have bladder and bowel dysfunction, the whole movement thing seems kind of cruel. I wonder if any test marketing was done with people who actually had MS.

So for better or worse, I hope that the whole new marketing campaign brings greater visibility to the disease and increases donations to fund research and support services people with MS and their families. In reality, the goal of these organizations is to make themselves obsolete and I, for one, don't think that can happen soon enough. I guess until then it's going to be "go orange!"

No Kidding

My husband and I do not have children. People think this is because of my disability but we actually didn't really want to have children. My diagnosis finalized this decision. People feel sorry for you when they think that you cannot have children but it's a different story when they learn you didn't want them. After all, normal people want children and there's obviously something wrong with people who feel otherwise.

I know that in my situation, children would've been a very bad idea. My disease is incompatible with the mommy lifestyle. Granted, I do stay at home but I have to pay somebody to take care of me. I am not physically able to care for a child and I lack the stamina to be with children for any length of time. MS fatigue is real and I usually take a nap after breakfast until at least 10:00 AM. Finally, my body is a serious superfund site of chemicals needed to keep my disease in check. I shudder to think that I might be worse off without them. Basically, I'm saying that I am perfectly content being the aunt of five nieces and nephews with another one on the way. I send them presents, receive pictures and even visit them occasionally. I'm the auntie in the wheelchair who doesn't really do much.

So, you may be wondering if people with MS can have children? The answer isn't a simple one and really needs to be decided on a case-by-case basis. Women are more likely to have the disease, so there is data on MS and pregnancy. The remarkable thing is that most women do very well during their pregnancy, but experience a relapse five or six months after delivery. This is why female hormones are being studied so closely as potential MS therapy. For that reason, I am glad that some people with my disease are having children. We need everything we can find to fight this disease.

At lunch today, my aide and I were seated near a table of mommies and their brood of little ones from an infant to four-year olds. They were cute, but what a commotion. I was glad to see them leave. Besides, at least one of them was staring at me the entire time. I just add to keep reminding myself that these children are our future and will eventually be part of the workforce needed to keep my Social Security checks coming. God bless the children!

Past Transgressions

I am not thinking about the new year yet. I have been pondering my past instead, my distant past. The 1980s encompassed my high school and college days and thanks to the social networking tool, FaceBook, I have been reconnecting with people and places from that time. I wouldn't go so far as to say that those were the best days of my life, but they were simpler. Back then, my life was full of possibilities and now it's more inevitability. I am finding it difficult to reconcile my past with my present.

My problem is that I only want to reminisce with my old friends and acquaintances about the Lydia from the 80s and not the current crippled Lydia with multiple sclerosis (MS). I don't like having to answer the question "what are you doing now?" The answer is a real downer. I was diagnosed in 1997 and my life has pretty much been downhill from there. Kind of awkward, and not a great conversation starter. There's a friendship you might not want to reestablish.

In a lot of ways, the core of who I am hasn't changed much. I'm still pretty sarcastic with a dry sense of humor. My situation has provided tons of material to feed my cynicism. I understand why people would feel sorry for me, but I'm not looking for pity. The reason I went on FaceBook in the first place was to keep in touch with friends, find old ones and maybe make some new ones. Because I can't work, I miss out on a lot of normal social interaction. Although I have always been a bit of a loner, it was isolation by choice and now I'm just isolated. The online world changes all that. With my laptop, I can participate just like everyone else and no one even needs to know about the MS unless I choose to tell them.

Now if you'll excuse me, I'll be taking a roll down memory lane.