Red Tape
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I received a layoff notice today, Friday afternoon, effective immediately. It says it is due to finances, but I believe I was chosen because of my illness. Out of the four employees who have been laid off this month, I had the most seniority, and was the only full-time staff member. I have been working full time at this office for six years. I was the person who trained everyone currently working in my department. As a matter of fact, I’m the one who wrote the job descriptions and delegated assignments when the company changed hands two years ago! There are six other full-time employees in my department who have less seniority than I do, and none of them lost their jobs. I believe that my layoff was, in part, due to filing a request for ADA accommodations this past Monday.
Last month, I received a clinical diagnosis of probable Mito, based on my symptoms and my sister’s confirmed diagnosis of MELAS. I almost never call in sick, but the work is affecting my health. My doctor doesn’t want me to work ten-hour days like I’ve been doing. She told me that I need to either cut back my hours, or telecommute at least 1/3 of the time. She also stated that I cannot lift more than 20lbs, walk long distances, or walk up or down stairs. I know that these restrictions would not adversely affect my productivity. In fact, I would not be surprised if my productivity would actually go up, because I would not be compromising my health the way I am now. On Monday, I gave the letter to my employer. She didn’t say a word about it, didn’t respond to my requests. The accommodations I asked for included a closer parking spot, the opportunity to do some work from home which I have done in the past, and to avoid heavy lifting, which only means that someone retrieves and carries boxes of annexed files for me. She didn’t tell me if she was willing to provide the accommodations or if I needed to be transferred to another position. She was unusually cool and distant throughout the week. I didn’t hear a word from her until this afternoon, when she called me into her office to break the news, and handed me a box to clean out my desk.
I’ve been an absolute wreck. The stress is making my symptoms worse. I have the worst migraine I’ve had in months, I’m too nauseous to hold down anything but ice chips, and my hands are shaking so badly that I can barely hold the glass. I’ve been pushing myself for years. Maybe part of me thought that if I kept busy enough I could forget about this awful disease and the tragic effects it’s had on my sister’s family. As soon as I took steps to start taking better care of myself, I’m out on the street. I finally give in and accept the label of “officially disabled,” and I become disabled and unemployed. Two weeks ago, my GI doctor recommended IV fluid boluses three times a week for four weeks. The infusion clinic is only open 8am to 5pm, so I would need to leave work a few hours early on the days that I have appointments. I gave the GI doctor the paperwork for FMLA and short term disability insurance, and his secretary mailed it to the Human Resource department the next day. I think my supervisor received the paperwork, because she nodded when I mentioned leaving early starting next Monday. Well, next Monday never came. The company let me go before it said a single word about FMLA or my short-term disability. So, does this mean that I get nothing? I had six full weeks of sick time saved up, and now I don’t know if I’ll be able to use it. Can my company do that, lay me off without acknowledging my medically necessary accommodations and medical leave? My husband isn’t home yet, and my kids are out with friends, and I’m just staring at the sparse, impersonal layoff notice…I feel so alone.
I think that it’s safe to make a generalization: everyone reading this article has come in contact with someone who, no matter how much you do to try to help them understand Mito and other chronic illnesses, just don’t “get it.” They listen to your explanations, glance at pamphlets or websites that you provide, smile, nod, smile some more. However, their holiday gifts to you speak volumes. Pajamas, more pajamas, exercise video (hint), pedometer (hint hint), jars and bottles of lotions and shower gels in dozens of fragrances so strong that your eyes water even before the wrapping paper is removed completely. Oh, and don’t forget the six month gym membership and the DVD series about “thinking yourself healthy!” (sigh) Sometimes the best course of action is to smile, graciously accept the gift/hint, and relegate it to a closet, at least until it can be re-gifted to someone who can use it. In the meantime, here are some great gadgets and gizmos that you might want to give to yourself:
I just had a ”routine” hearing test and was told that I have a moderate to severe sensorineural hearing loss in both ears. I had noticed that the radio, TV, and telephone were sounding a bit muffled, but I was shocked to find out that my hearing was that bad! How could I lose so much without realizing it? I have a niece who has Mito and was born deaf. She had cochlear implants placed when she was a toddler, and she goes to a school for the deaf that uses both sign language and spoken English for communication. Should I learn sign language, even though she’s the only person I know who signs? My Mito doctor said that hearing loss is very common, especially for people with MELAS, and that it is most likely progressive. I have an appointment to be fitted with hearing aids, but my health insurance doesn’t cover them and I don’t know how I will pay for them. How will I use the phone if I can’t hear what the caller is saying? I have hundreds of questions and don’t know how to find the answers.
~A.L. in Massachusetts
How can people who depend on prescription formula for nutrition find assistance paying for it? The first article of this series provided financial resources for medical nutrition for children with special needs. Unfortunately, there are fewer programs available for adults in need of medical nutrition supplements. The purpose of this article is to discuss the barriers encountered by adults in need of nutritional supplements, the role of federal and state health care programs in Medical Food/Enteral Nutrition Therapy/Medically Necessary Supplemental Nutrition, and potential sources of assistance from public and private sources.
I'm a very independent person and hate having to ask people to do things for me. But now I'm having to ask my husband to do so much--take me to doctor/procedure appointments, help me deal with problems with the feeding tube, do the weekly shopping (I don't have the stamina), lift and carry things I don't have the strength to lift and carry anymore, walk the dog since I'm not supposed to burn calories with exercise, the list goes on and on. Not to mention the fact that he's my primary emotional support. It's not that he has a problem with it--on the contrary, he continually reassures me that he's thankful he can do these things for me. (As you can tell, he's a wonderful man!) And I try to find things I can do for him, even if they're small things like making his coffee in the morning or doing the bills, and to constantly express my love and care for him. But it's hard not to feel frustratingly dependent and depressingly incapable, as well as guilty at the toll my illness is taking on him. And all of that feeds the anger I feel at being ill in the first place.
I know that as I gain back some weight and stamina, I'll be able to do more things for myself, and that I need to be as patient with my current limitations as my husband is. But that's certainly easier said than done.
I'm a very independent person and hate having to ask people to do things for me. But now I'm having to ask my husband to do so much--take me to doctor/procedure appointments, help me deal with problems with the feeding tube, do the weekly shopping (I don't have the stamina), lift and carry things I don't have the strength to lift and carry anymore, walk the dog since I'm not supposed to burn calories with exercise, the list goes on and on. Not to mention the fact that he's my primary emotional support. It's not that he has a problem with it--on the contrary, he continually reassures me that he's thankful he can do these things for me. (As you can tell, he's a wonderful man!) And I try to find things I can do for him, even if they're small things like making his coffee in the morning or doing the bills, and to constantly express my love and care for him. But it's hard not to feel frustratingly dependent and depressingly incapable, as well as guilty at the toll my illness is taking on him. And all of that feeds the anger I feel at being ill in the first place.
I know that as I gain back some weight and stamina, I'll be able to do more things for myself, and that I need to be as patient with my current limitations as my husband is. But that's certainly easier said than done.
My child's Mito specialist wants us to follow an emergency protocol when she gets sick. I worry about her when she's not with me because she's too young to tell paramedics or emergency room doctors about her health problems and necessary emergency treatment. She doesn't "look sick," but a simple illness that might not even cause another child to miss school could put her in the hospital. I don't want to keep her from doing all the things that her friends do, like going to camp or sleeping over a friend's house, but I need to keep her safe by making sure her emergency protocol is followed. What can I do?
Dear Red Tape,
My son, Sam, is 6 and has PDD and a clinical diagnosis of Mito. Sam has many health issues that kids with Mito frequently have, like problems with overheating, dehydration with even minor viruses, and fatigue (although he gets really hyperactive before he crashes, which is next to impossible to get his teachers to understand!) Our biggest concern right now is safety. Sam escapes from the house and runs into the road, and doesn't stop for traffic. When we go shopping I have to keep him buckled into the shopping cart, which makes people stare and make rude comments. Sam eats food he finds laying around and even food that has been thrown away, which could be extremely dangerous because he has a severe peanut allergy. We need to put up a fence in our back yard so that he can play safely but we just can't afford it. How can we explain his wandering behavior to other people? I'm so tired of hearing that Sam needs more discipline and I'm babying him, he needs a spanking, and so on. My husband and I end up arguing about Sam's needs and our finances, and our marriage is suffering. No one seems to understand what we're going through. I feel so isolated. Please help!
Charlotte in PA
My balance is getting worse, especially when I'm tired. My neurologist suggested that I look into using something to help me get around more safely. I don't know where to start. What mobility devices are available, and what are the pros and cons of each?
My daughter has symptoms that might be related to Mito. She will be seen by a Mito Doc in a few months. We're traveling a long way to get to this appointment and I want to make sure we use our time as efficiently as possible. What can I do to prepare for the appointment?
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About the Red Tape Advocate:
Heidi Martin-Coleman is a self-employed Disabilities Consultant. She combined her nursing and education degrees while working as a Developmental Nurse Educator for several years, even acting as Service Coordinator for a child with Mito. Heidi's youngest child was diagnosed with Mito as an infant, which led to testing other family members and the discovery of a mtDNA defect. Heidi and her eldest were then correctly diagnosed following over a decade of misdiagnoses. Sadly, Heidi's youngest daughter passed away a week before her third birthday. Coincidentally, this was in September 2005, during the first Mitochondrial Awareness week. Heidi has the unique perspective of experiencing Mito as a clinician, parent, patient, and now returning full-circle as a consultant and advocate. Heidi lives in Western Mass. with her husband, two children, and service/hearing dog, Mercury.