Send Your Replies to S., who has medical problems & wants help to make safe decisions
Dear S.
I think dealing with medical care issues can be overwhelming even when
there is not a dissociative/abuse issue. If you are at all religious,
I would suggest asking someone from a church to do in-home visits.
Not necessarily for the long term but to see if they can provide any
help. Maybe a clergy person can meet with you and talk about your
medical issues and see what help can be given.
It sounds like having someone to coordinate your medical care would be
a good idea. There may be a social worker or an outpatient program at
a hospital that could help with this. The problem is finding someone
trustworthy. Your children may be able to help you research it. You
could tell them that before you want to look into moving near them,
you want them to help you with the Net and researching the care
options that will help you stay independent but also make the social
connections that will make you feel better. Unfortunately, abuse of
people with impairments or disabilities is all too common, so it is
something that a lot of organizations are aware about. However it is
also possible to find excellent, caring people who will help. The
problem is picking the right person.
It sounds like what you need is suggestions on how to accomplish daily
living tasks while dealing with the oxygen tank and finding support
systems to help you socialize, which may need to start in your home
for your comfort level and then branch outward, and making friends.
If you can deal with privacy issues, maybe one of your children can
set up an email account for you and screen it and then pass along the
relevant information. For example, if the email is used to make
inquiries about finding people/programs who would help, your child
could send the questions and then tell you the replies, but with only
the information you need - if the answer is that they can't help, or
that you need to be referred somewhere else, then your child can go
through that and deal with it and only send on the stuff that is
really practical and helpful.
you don't say if you have a pet but they can help. I don't know how that would work with the oxygen though.
The county you are living in may have programs set up for in-home
assessments of people who are elderly and/or living with chronic
conditions, to see what other supports could be provided. That could
be worth checking.
If concentration is an issue, and you are lonely, trying audiobooks
instead of written ones might work better and then you'd have some
entertainment. When I get like that I have not been able to read or
watch either TV or movies b/c they were all too distracting and took
too much effort. however, I could listen to spoken material.
I'm sorry about the abuse and the dissociation. Your therapist should
probably be doing some of this coordination of care too, at least
that's what I was told when I had problems somewhat like this. If you
have a primary care doctor and a specialist, it might help for your
therapist to call both of them (assuming your permission) and discuss
your situation and see how they can help. this doesn't mean providing
a lot of details about abuse but making sure that emotional care is
part of the picture.
take care,
MaryK
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Dear S.
I thought of something else that might help:
There are cardio/plumonary rehab clinics in many hospitals now. I went and it is supervised by medical staff and technicians who check your blood pressure and oxygen level as you do even minor exercises. The exercises, even for us with pulmonary illnesses, are good for strengthening the body, heart and lungs so you can do all you can to stay home and be as well and functioning as possible. You go at your own pace and the staff helps coach you. You meet others who have many of the same issues health wise as you do. It's a very safe place to be. Just a thought. You have to go through your medical provider/pulmonoligist.
Dottie
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Hi S.
I can sooo relate to your problems and situations. I rely on oxygen at night in order to keep me breathing as my oxygen level goes down to 84% lying down. I have an oxygen concentrator which hooks to electricity. And I have a 12 hour back up tank of oxygen here in case of an outage or the machine stops working.
People have portable oxygen systems they can carry with them for grocery shopping and doctor's or errands. It's like a little package wrapped up in a felt or black covering and the tubes in your nose work the same as the tanks. I am noticing it more and more all the time in the local stores and at the parade yesterday. Even at the laundromat. If I had any place to go to visit people, I would also have a portable oxygen system to use. Not a tank.
Most insurances will pay for this with no expense to you if you are on Medicare and or Medicaid. Or both. I'd talk with your pulmonary specialist and see what he can do for you so you can go out. I have pulmonary fibrosis and almost died in 1999. I had a lung biopsy and there is not any reason why I have it, I just do, and I never smoked.
I've been in therapy for almost 25 years and spent a lot of of my whole life from high school on with different psychiatriists and friends or ministers. Not until I got into real intense therapy did I find out the true cause of my problems. Horrible abuse and physical and emotional and religous abuse, that I would never talk to any one about. Finding out I had multiples was not at all a surprise to me as I always found things I did not know how I got/bought, etc.
Within the bounds of therapy, I now know that not everyone is out to get you or hurt you. Trust your own gut/mind a little bit. We, as abuse survivors, have a "Built in radar system" of who we can and can not trust! And I have met some wonderful people who, had I not trusted-a little at a time at first- I would have never had. Don't divludge your whole history in one visit, though. A little at a time to begin, just with one other person and wait a few weeks and see if you hear anything back about you. If not, go a little further.
I am insulin dependant and badly diabetic. If you take insulin and are over weight, the more insulin you take, the more weight you gain. Ironic, isn't it?! What is suppossed to help you, makes you worse. I am very heavy. I have always been heavy even in Kindergarten. But I've had diabetes since 1971. I controlled it for a while with diet. Went off that and ate what I wanted. Gained again and have done this four times. I WAS 258 and climbing in December of 2009. Some of it is the Prednisone I have to take for my lungs but am almost off that now. I almost died again on the 9th of December when I took a new diabetic drug. I started a real diabetic plan on December 9th. Since then, it's slow, but I have lost 21 pounds. And I have gone down dramatically on my insulin shots and the units I have to take. Cholesterol is down, A1C is 6.6, blood pressure is down and triglycrides are down. I am able ot walk so much better now also as result of all this hard work, and I am not done yet!
It is a matter of committment to MYSELF. Sugar is poison to me. Sugar now makes my heart go way too fast and I am now afraid I will die if I continue to eat it, so I have decieded I don't want to do that. So it's no sugar foods and limited carbs and fruits, veggies and protein, milk and nuts. I don't call it a diet as that leads to failure fast. I call it a "meal plan". And it is working but it has to work only when you get your head in the right place. Besides, I was addicted to chocolate and have been working hard on that in therapy for two years--just on that issue alone. I am overcoming it.
About the social isolation. For some reason, when you are on oxygen, people are scared of you or it. I am not sure why. Reminds them of the sicknesses or that they may face it or whatever, I don't know. I just tell people to come anytime and a few do but most don't. So I drive and I go to them. Yesterday I went to the fourth of July parade in town. Very nice and I enjoyed myself. Met up with some people I had not seen in a long time. Met a lot of church people I had not seen in 8 years. When they ask me--and they did -- "how's your health?" I could just say "It's much better now, thank you, and I've lost 21 pounds since December."
You have to be good at evading some things, and I am!! :-) Don't give out all your information at one time. I was invited to church yesterday and today had planned to go. Got up late and got a late start and didn't make it but here I am answering some of your concerns, maybe.
Community Action Centers should be able to help you get in touch with people who can give you the right connections to call for help. Some of their Social Workers will come to the house. A Mental Health agency should be about to direct you, also. Dept. of Health and Human Services also have tons of resources available to you.
It's hard when all the friends you once had --and I had a ton-- have died. And it's even harder when they drop you. Maybe they are scared and probably don't think about you and how you feel. And they may think you don't want them if you don't go or call anyone now. Fear can be paralyzing, crippling-- and it is not good for us. Try to do one new thing you haven't done in a long time, once a day to begin, and see how you feel and how it goes. It's like baby steps. We didn't conquer walking in a day when we were babies. It's one foot ahead all the time. Fall down, grin, grumble a bit and pick yourself up again and sometimes ask for help. We learn assertiveness and we also find how good we feel after we succeed at something or get compliments.
As we get older, (I'm 58 but a very young 58), it's harder to make new friends but it can be done. I am doing it. Church is a good way to meet others, also. I don't know if any of this helps you but I hope so. Keep in touch through the internet. You can write Lynn and she can get the information to me, if you like. Best of luck and you are not alone.
Dottie
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Dear S.,
Trying to navigate the complexities of DID along with physical limitations must be extremely challenging. I think Lynn has some very powerful suggestions...the Department of Aging and the Gray Panthers can be excellent resources. There are also organizations specifically for individuals with physical limitations as well as for those with emotional challenges. In my area, we have Resources for Independent Living. Check the phone book to see if you have a local United Way Agency. They can direct you to those organizations that would best suit your needs.
I had a friend who had some pretty serious physical disabilities and was no longer able to stay in her home alone. She put in a request at a local college for a "roommate" who would receive free room and board in exchange for helping her with the details of daily living. She was very fortunate to have found a young woman whose college major was in the human services field and the arrangement worked out very well for both of them. Of course the young woman was well screened beforehand. As Lynn suggested, an assisted living facility may also be a viable option.
As far as dealing with the fear, that is always the most difficult part, isn't it? How to move beyond what we have come to know as safe in order to, in some way. try to improve our lives? Definitely something your therapist would be able to help you with.
I sincerely wish you all the best as you strive to maintain your independence and safety.
Blessings,
Lynda Wisdo
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Dear S.,
I understand that it is hard for you to use the Internet, but if you were able to use email or navigate websites, you might find some very helpful connections with safe people. If you are aged 60 or more, most cities have senior citizen advocates through community Senior Centers or the Department of Aging. They might be able to guide you to safe resources. If you are going to hospitals, the social workers there may have some excellent resource ideas for you. Organizations such as the Gray Panthers might have some ideas. And perhaps it's time for you to consider moving to an assisted living facility, if your physical limitations are very serious and you don't want to depend on your children.
I really think you should insist that your therapist help you figure out how to make these decisions safely. That's what a therapist is for.
I wish you the best and am sure other MV readers will have helpful ideas for you.
Lynn