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Red Tape

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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?

My 16 year-old daughter is very bright and dreams of going to college.  She has an IEP that includes shortened days and a home tutor, she uses a power wheelchair for distances and has a G tube for hydration and occasional extra nutrition.  Is this possible?  Where do we start?

When it rains, it pours; when a family experiences a medical emergency, the routine household expenses never stop.  When a family member has a chronic illness, at some point an additional financial or personal crisis is bound to occur.  Where do we start?  Where can we find help?

Obtaining or maintaining health insurance is absolutely critical for someone with a chronic disease like Mito.  One hospitalization for dehydration or an infection could end up costing tens of thousands of dollars.  People who do not have health insurance tend to delay medical care until their condition is serious, resulting in higher costs than would've resulted from preventive care or treatment earlier on in the course of the illness.  These resources can help you find and maintain health insurance through public or private programs.

Assistive Technology commonly refers to "...products, devices or equipment, whether acquired commercially, modified or customized, that are used to maintain, increase or improve the functional capabilities of individuals with disabilities...", according to the definition proposed in the Assistive Technology Act of 1998.  Another word to describe Assistive Technology is expensive!  Fortunately, there are numerous programs to help families find assistive devices and equipment they need through lending libraries, grant organizations, school systems, and health insurance equipment benefits.  AT doesn't need to be fancy, however, and there are lots of AT solutions that can be created with your own two hands and materials found around the house. 

Two years ago I was diagnosed with Mito.  As horrible as it is to have Mito, I was happy to finally know what had been making me sick for more than ten years.  Unfortunately, most people in my family and many of my friends look at me (I don't "look sick" or need a cane to move around) and think I'm exaggerating my symptoms, or even making things up altogether!  I even had a doctor tell me that my severe fatigue and muscle pain was in my head and all I needed was to get a job so I wouldn't have as much time to feel sorry for myself!  I can't stand the nasty comments, groans, and eye rolling when I use my handicap parking placard or the scooter in the grocery store, so I grin and bear it…and can't do anything the next day because every muscle in my body is screaming.  When I tell people about my symptoms, I always hear "Everyone gets aches and pains and we just take some ibuprofen and keep on going,"  "Everyone feels tired, I work full time and have three kids but I still manage to tough it out", and "All you ever talk about is how sick you are; you don't hear the rest of us complaining!"  I've tried to educate my family and friends about Mito but most of the information out there is written about children with it.  Are there many adults who have Mito?  My symptoms are getting worse every year, and I'm only 35!  I feel so alone.

Ellen in NC

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