I was in a perfectly straight line, flat on my back, half in, half out of our powder room, with my head and shoulders resting on the seat cushion of my wheelchair. The cushion had slid with me and I’m sure it had protected my head and neck from hitting the hardwood floor of the hallway. This mishap occurred on election night. My husband Michael came in the front door, saw me, dropped his briefcase and computer in the kitchen, and rushed over. My husband helped me get back into my wheelchair, pushed me into the powder room where I had been headed for my pre-vote pit stop, and before I even got up I was down on the floor again.
I started to cry while Michael stood over me and pronounced that he could not get me up and was dialing 911. He told me to get a grip. I did not appear injured and at least I had all my clothes on! As I laid there, my daughter Hannah appeared, with an “oh there’s mom on the floor again" look. At least she inquired about my wellbeing and from my prone position I reassured her I was OK. Then, without skipping a beat, she inquired if I thought she had too much eye shadow on. She leaned over me so I could get a closer view and we briefly discussed the concept of how less is sometimes better than more.
As we waited for reinforcements to arrive, I remembered a summer when I had found myself in a similar situation. At the time I had a substitute aide, a woman of great proportion with tattooed eye brows. With the help of my petulant daughter, she dragged me out of the very same powder room and deposited me back in my chair. I was unhurt, but badly shaken. Hannah, sporting the same exact mom-on-the-floor look she had tonight, announced that she was going swimming. Then the aide asked if I knew that she worked in a strip club when she wasn’t doing home care. The timing was perfect: My mind immediately switched from self-pity to bizarre fascination.
As I remembered this fond memory, the EMTs arrived and quickly had me back in my chair. God bless them! They even told me to never hesitate to call. I pulled myself together; Michael and I voted; we grabbed a bite to eat and returned home to watch the returns. Hannah came in and joined us. It was as if the evening’s earlier events had never happened. I don’t know about you, but falling to me is one of the most frightening aspects of having MS. Injury, embarrassment, loss of control and that nagging little thought that a fall could happen any time, any where even on a good day. But, on the other hand, my family’s ability to take such mishaps in stride reminds me that life does not stop for MS. Maybe it pauses sometimes, but it does not stop. And even from the floor, life can be interesting. A strip club?
I need to vent before total exhaustion sends me to my recliner for a nap. Are you as tired of going to the doctor as I am? In fact, I could get sick thinking about it.
I spend days out of each month and hours out of those days going to different doctors trying to manage the myriad of symptoms multiple sclerosis brings. I have a neurologist, a urologist, a gynecologist, an ophthalmologist, a chiropractor, a dentist, a psychotherapist, a physical therapist, an infusion specialist and, of course, the obligatory primary care physician.
One would assume that with 11 healthcare providers my medical care would be the least of my worries. Actually, it is one of my biggest sources of anxiety. And that’s because I don’t really know which of these providers is overseeing my care. OK, I’ll give my dentist a pass. But a few days ago I arrived at the lab to have blood drawn with two scripts in my hand—one from my primary care physician, and the other from my neurologist. The tech laughed out loud and explained she would have to draw at least 20 tubes, which was way over the limit for one patient for one day. The stricken look on my face must have touched her on some level. Tears welled in my eyes, and rather than dismissing me, the tech called me back to her office, identified all the duplicate tests and managed to reduce the number of tubes to a manageable amount. She assured me the results would be sent to both providers, then shook her head and said, “If only they would talk to each other.”
Communication is definitely an important concept when trying to manage your health care under normal circumstances, but for those of us with chronic problems it is vital. I have discovered that peripheral providers, like the lab techs or a pharmacist can be great facilitators of that elusive communication. My pharmacist is like a guard dog. He has picked up on possibly serious drug interactions that could happen by having so many doctors prescribing different drugs. Recently, the urologist prescribed a drug and my pharmacist would not fill it because of my allergy to sulfa. (A component of this particular medication was triggering allergic reactions in people sensitive to sulfa.) Well, I was so relieved my pharmacist was on the case!
I don’t know about you, but I’m exhausted trying to keep it all straight. In the end, I’m the one who is really in charge of my medical treatment, I guess. In the meantime I’m headed to the recliner. I have an appointment in an hour.
If you asked me today what the argument had been about, I couldn’t tell you. I can only remember it took place in the bathroom next to our bedroom and I had just finished three days of steroids. I was the color of a Maine lobster, sick of feeling sick, frustrated that my husband was arguing with me. So, I did it. Looking right at him, I took my precious wedding ring off my finger, threw it into the toilet and flushed. A split second of gratification disappeared quickly as I watched the symbol of our marriage swirl down the drain. That was four years ago, and my naked finger serves as a constant reminder of how MS changed my life and my family’s forever.
MS is the uninvited guest that invades your home, takes up residence, behaves like a terrorist and will not leave. Every family handles it differently of course. Some circle the wagons, pull together and grow stronger as a unit. Some fall completely apart. I think most fall somewhere in the middle—like us. Dealing with MS as a family is so difficult I could cry and some days I do, a lot. When I was first diagnosed my daughter was just starting to walk and my son was in first grade. Other than a slight limp and tingling hands and feet, I was doing very well. But the day after my first shot, Hannah had to go to Grandma’s because I was too sick to take care of her. This should have been my first clue just how bumpy the road ahead was going to get. However, my daughter starts ninth grade next month, my son is going to community college, and my husband is still devoted to us all, except when he is threatening to leave. Let’s hope that’s his way of venting.
When the children were little, we shielded them as much as we could so as not to alarm them. But there were bound to be times we couldn’t. I often wondered what my children were thinking when a nurse would come to give me steroids? Or later on when I would be hooked up for two or three hours getting IVIG? What were we thinking? Looking back, we should have been more direct as it might have made them more understanding as my disability progressed. But who knew I would wind up in a wheelchair? It’s tough when you have to rely on your kids to help you pull up your jeans and get out of the bathroom. Then when you have to put your parent hat back on and demand that “Jersey Shore” get turned off immediately and that homework get finished. Disability undermines authority—at least in my family. We are working on it.
My darling daughter once told me I wasn’t like a real mom. Ouch! I most certainly am a real mom. A mom with MS. To many of us, June Cleaver was a real mom. But can you picture June meeting Ward at the front door with her pearls slightly askew and, after taking his hat and briefcase, explaining she was too exhausted from her MS to make dinner? Of course you can’t. June Cleaver was a make-believe mom with an idealized TV family. MS is a great thief. It steals our personal independence and, if you let it, the relationships that we prize the most. Our family is far from perfect (except for my husband Michael—ask him, he’ll tell you), but with perseverance, forgiveness and a basic love for each other, we gather strength and energy to make it through yet another day.
Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and children Hannah and Alex. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.
Learn more about how MS affects the whole family in the Fall 2012 issue of Momentum.
Are you just really sick of being in a wheelchair? I am. I’m so sick of it I need to vent. I find being in a chair makes me feel claustrophobic, trapped and sometimes like an invalid. Or, am I “invalid”? Yesterday, during a heated discussion with my husband, in a big huff I rolled into another room. And he said, “Don’t you dare roll away from me when I’m talking to you.” If that statement hadn’t been so pathetic, it would have been funny, but I take comfort that at least I could pull off a dramatic roll.
When you are in a wheelchair, people see you differently. You are not at eye level with the rest of the adult world and can be easily overlooked or “invalidated.” How many times have people walked quickly by me, eyes ahead while I struggle to get a door open?
Or take the incident I recently had in the supermarket, where some strange man came up and started pushing me thru the handicapped checkout lane because I wasn’t moving fast enough for him. My husband, a few feet ahead with our shopping cart, looked back, and the guy, while still pushing me, says, “Hey buddy, forget somethin’?” We should, as a group, carry small yet discreet stun guns for just such occasions, but the whole incident made me feel invisible, to say the least.
But I prayed for invisibility about a month ago on another shopping trip with my daughter. We were at a local department store and, while the main aisles are wide enough for a wheelchair, some merchandise displays can even make walking a challenge. I was trying to push myself along between two very full racks. My daughter returned from the other side of the display and was mortified that little plastic hangers holding pretty little panties were now stuck in the spokes of my chair. As I tried to extricate myself from the situation, my wheels knocked the rack just enough so the matching bras above started falling. We hung back up what we could and made a hasty retreat to juniors.
This time of year is especially difficult being in a chair. Rolling over uneven, hard grass to get to a picnic spot or soccer field can give you bladder issues even if you haven’t had them before. And the beach, well….
Another peeve I have with being in a wheelchair in the summer is fashion related. Summer attire is fun, bright and crisp, until I pair it up with the hot, black accessory that has become almost another body part. So as we leave the house, I ask my husband, “Honey is it my new slacks or is it the chair making my butt look big?” He reassures me that it is neither.
I hate being in my wheelchair. My little cat Miss Lottie Lou loves being in my chair. In fact, my wheelchair is at times full of what we call “Lou-fur,” which means my backside is full of cat hair. But, who would know?
Those who require daily assistance, like me, can understand how anxious I felt when my trusted and devoted aide, Laurie, took a much-needed vacation with her family.
Well, what was I going to do? Panic? That would’ve been great, but didn’t solve the problem at hand. I needed to find someone who could step in, take care of me, get me to appointments, help me prepare meals, and yip at my kids if they need it (and they do). I’m embarrassed at how self-absorbed that “little me” moment sounds, but it is scary to have strangers taking care of the most private aspects of your life. I’ve been so lucky and blessed to have Laurie. But aides get sick, aides have family obligations and they absolutely need time off!
Finding substitute help can be difficult and nerve-racking, at best. I’ve had some pretty interesting, if not scary experiences with aides and have had to draw the line a few times. Once we tried out a replacement when Laurie was away for a few days. She did notwork out. I could have overlooked her refusal to do dishes or to help me with household tasks, but her need to share the intimate details of her love life and her interest in my prescription drugs were where I drew the line.
Another agency once sent an aide who was extremely fragile from years of smoking. She would use my walker to hold onto to keep from falling over during her violent coughing fits. This was a big problem since I was also using the walker to keep from falling over.
Then there was the vegan who would not help prepare meals that contained meat. In addition, she would not use the microwave because she thought the radiation was deadly and the cause of my MS. I could have worked around these limitations, but when she started trying to convert me to her religion I had to draw the line again.
My personal favorite was the lady who quit before I could have the “it’s not working out talk” with her. She seemed fine at first and came highly recommended, but I should have gotten a clue when she fumbled in her purse for a new fentanyl patch as we were heading out the door for an appointment. She told me not to worry because the patches helped her to breathe. Breathe? I found her sound asleep sitting at the kitchen table later that day.
Anyway, Laurie did it! She found two very capable subs with whom I am comfortable coming into my home, helping me with my personal care and taking care of the household activities. I’m sure you all have experiences of your own to share about drawing the line, but better yet, tell me about the caregivers in your life who are totally fantastic. In the meantime, I am going to figure out a way to give Laurie a raise!
In my last vent, I was feeling very crabby about the host of problems that having MS creates. The problems have not been solved, but I am coping a little better. And, thank heavens, my mood has improved. Maybe because I got my hair cut and for the first time in my life, professionally colored and highlighted. I can see your eyes rolling and I can hear some of you laughing out loud. But it did perk me up, and I have gotten so many compliments, including the dreaded, “You look so good.”
This got me thinking. What is so bad about looking good? Remember Billy Crystal doing the Fernando Lamas shtick? His big line was, “You look maahvellous,” followed by, “It is better to look good than to feel good.” There are many days I would sell my soul to feel better than I look or move, but neither will happen. So I’ll gratefully take any positive comment and just hearing it makes me feel better. Really, would you prefer people coming up to you and saying, “I hope you don’t feel as terrible as you look.” I wouldn’t. Do you think our discomfort with the “But you look so good” line comes from fear? Fear that those around us have no clue about our pain and the struggle we have just to get through the day? A few years ago, I was depressed and overwhelmed by MS and how it can turn your life upside down. I took to my bed and it was not pretty. It was also very disturbing, especially to my kids and husband. One of my dearest friends, someone I have known since eighth grade, showed up at my house. Not the shy type, she came right upstairs and said, “What the H... are you doing? Auditioning for a role in a nursing home commercial? Get the H…UP!” She helped me shower, dress, put on my makeup and was completely oblivious to my complaining and whining. After pasting me back together, we had lunch, at which time she pointed out that I was one of the vainest people she knew (one of my endearing qualities) and even though I had MS I didn’t have to look or play the part of sick person.
She was right. I am vain. And I like to look good. So even on the days I’d be getting an infusion, I would start out in well-styled hair, lipstick and a nice outfit. Now the end of the day was another story, but when I arrived the nurses would all comment on my great appearance, which made me feel better, even if just for a little while. Having MS is bad. Looking good even though we have MS, in my opinion, is a GOOD thing. So, don’t be mad when people tell you how great you look. Thank them and tell them you feel maahvellous.
Having MS is like being on a flight when the captain comes on and announces that the flight will be delayed by two hours and those of you who have connecting flights will miss them.
MS is a disease that challenges connections of all kinds. Connections to faith, friendships, marriages, families, vocations, hobbies, careers and hundreds of important and meaningful pieces of one’s life are suddenly missed. But one of the incredible mysteries of dealing with this disease includes the new connections that seem so random, but which bring comfort, strength, and ongoing blessings to our lives.
One of those blessings came to me at one of the lowest points of my life. During an extended hospital stay, Dr. Ping Li, a resident in the Neurology department at the University of Buffalo School of Medicine and an extremely brilliant and gifted physician, took a special interest in me and my situation. She was an advocate, guardian angel and became a dear friend.
Late at night when she was on call and hospitals are such lonely places to be, she would pop in and we would talk. We would talk about her life in Beijing as a child, balancing work and family, how we both liked shopping at Ann Taylor. But it was the touch of her hand, the tears in her eyes when she discussed the brutality of MS and her soft smile when she was giving a Ping pep talk that is part of a connection that I will always cherish.
Give What You Know at MSconnection.org
Do you need to vent? I do. I have just about had it with all the problems that having multiple sclerosis brings. And if the physical issues weren’t enough, the mental anguish caused by all the obstacles MS throws my way makes me really crabby.
Some of these hurdles are ongoing, like the financial havoc MS creates in my life.
I am completely disabled, but I am ineligible for Social Security Disability Insurance. Even though I have worked and paid into Social Security since I was 16, the quarters that the Social Security Administration looked at were more recent—the years when I was home caring for our children, and not earning income. Oh, well. If I live to be 62 years old, I can collect early retirement benefits.
I also don’t qualify for Medicaid because my husband’s income is too high. But is it really? Not when we figure in all the expenses of MS, such as my fabulous aide who comes every day to help me shower, dress, get to the bathroom, do laundry, take me to appointments … you get the picture. We pay for this help.
We also pay for health insurance and right now my health insurer is refusing to pay for my MS treatment. It allows 20 physical therapy visits a year, of course, with a co-pay. But 20 physical therapy treatments per year for a patient with MS are hardly adequate, so we pay privately for more. Then I need a customized brace for my ankle, but the co-pay is $450. My daughter also needs braces on her teeth, but we have no dental coverage. So my brace will have to wait.
Between extra help, co-pays, modifications to our house and the ever-increasing costs of medical insurance, MS has just about broken us financially. We now live paycheck to paycheck with an ever-growing stack of bills. So I’m really, really crabby. MS stacks the cards and it feels like everyone else is holding them. Something must be done. I’m thinking about that. But I’m also thinking about how beautiful my daughter’s smile will be.
For questions about SSDI or Medicaid, or to ask about financial assistance, call an MS Navigator at 1-800-344-4867, or visit nationalMSsociety.org/financialassistance.
As a good friend of mine says, “Are you kidding me?” I had this response to yet another obstacle in an allegedly accessible building—the drug store. There are handicapped parking spaces and curb cuts outside of the store. But the doors are 1960s originals—heavy, manual, double doors that make it virtually impossible for anyone in a wheelchair to enter. My frustration does not stop there. The MS clinic in the hospital where I am a patient has no automatic doors. One must rely on the kindness of strangers to let them in. This, of course, is the same hospital where the bathrooms in the rehab unit are inaccessible by wheelchair. Are you kidding me? Then there is the door at the brand-new neurological center where one of my providers is located. The door is not automatic and so heavy that even those without issues have a hard time opening it. Are you kidding me?It seems incredible that some of the biggest offenders to accessibility are healthcare providers. And it’s not just doors, it’s tables. Wouldn’t you think that a doctor’s office would have at least one examination table in their office that would be high enough for people with profound mobility issues to manage? There are those of us who can’t just “hop up”! Last winter, I had to obtain an ultrasound for a suspected blood clot in my leg. I went to the imaging center, where they felt they couldn’t safely get all 115 pounds of me on the table, even with the help of my aide and their techs .The table was just too high. I was then sent to their other location with the promise that an adjustable table would be available. It was. But it was located in a room the size of a broom closet. Equipment had to be removed so my wheelchair could get through the door. When I used my chair to start the transfer, it knocked over other equipment, half of me went under the table, and the tech and I both yelled, “Stop!” After all the hysteria subsided, I had the test. No clot. Dealing with all the problems MS throws our way, I think the medical community could be more attentive to accessibility issues. No kidding, doors and tables would be a great place to start.
Are you tired of having MS? I am. I’m so tired of it I want to scream. Or at least vent, which is why I came up with the idea of venting regularly for the Society.
Let me tell you about one recent event that almost tipped me over the edge. My 18-year-old son Alex injured his eye at work—landscaping, OMG, with a stick! It was something mothers everywhere dread— the poked-eye situation. So I knew he had to be seen by a doctor right away. Off we went to an emergency care facility with my son holding an ice bag to his face with one hand and pushing me in my wheelchair with the other.
The triage nurse said, “So, what kind of problem has you in a chair?” I replied, “MS.” She started asking me all about me, while ignoring my now-squirming son with the ice bag. I redirected her to him and she showed us into an exam room.
The next nurse comes in, sees me in the wheelchair and wants to take my vitals. I redirect again to the kid with the bad-looking eye and the ice bag lying on the exam table. Finally, the doctor comes in. This time, I was ready. He looked at me. I promptly announced that I was perfectly fine, but my son ...
End result: My son was not blinded, I still have MS and I still really wish I didn’t. A sharp stick in the eye and having MS are both bad. But venting is good!
What’s happened to you recently that makes you tired of having MS? Stay tuned for more vents.