Whether you’re newly diagnosed with a condition, or have been living with it for years, getting the support you need is crucial to maintaining your best healthy life, both physically and mentally. There are tons of ways to participate in support groups, whether it be through an actual physical get-together, online meetings, or even actively participating in message boards.
The benefits of support groups are obvious – being in an environment in which other people understand you and can share helpful advice and motivation is always going to be an aid, however it’s important to see how this engagement can benefit your personal relationships. It can be truly difficult for someone to give the support they want to a person with a chronic illness, because they don’t truly understand or know what to say. And it can be equally hard for the person affected to really share in words what is going on in their minds and with their bodies. Going to an outside source of support can create a better bond between the caregiver and the person who is ill.
Often times, people are hesitant to go to support groups because they feel what they are going through is too personal or intimate to share with a room full of strangers. So, if you’re feeling hesitant, think about the benefits of just going and listening. It can be more beneficial than you may believe to just be silent for an hour and soak up what others are saying. And if going to a support session seems like you are relinquishing some of your independence, just remember that everyone needs a helping hand sometimes, just don’t be afraid to take it.
Below are some great resources for support groups from some of our friends in the rare and chronic disease community. Also, don’t hesitate to ask your doctor or medical professional where to look.
Pulmonary Hypertension Association
Pulmonary Hypertension Central
MD Junction Pulmonary Hypertension Online Support Group
Daily Strength Pulmonary Hypertension Online Support Group
Pulmonary Hypertension South Africa
Pulmonary Fibrosis Foundation
Daily Strength Pulmonary Fibrosis Support
Coalition for Pulmonary Fibrosis
MD Junction Pulmonary Fibrosis Online Support Group
Daily Strength Narcolepsy Online Support Groups
Narcolepsy Online Support Groups
Huntington’s Disease Society of America
Daily Strength Huntington’s Disease Online Support Groups
Huntington’s Disease Lighthouse Families Online Support Groups
Huntington’s Disease Advocacy Center Message Boards
Huntington’s Disease Youth Organization
Are there support groups which you have found helpful? Please share with us!Posted in Caregivers, Diseases, Featured, Media Center, Uncategorized | Tagged chronic illness, Infantile Spasms, narcolepsy, Pulmonary Fibrosis, Pulmonary Hypertension, Support, Support Groups | 3 Comments November 16, 2012
It seems like the holidays begin earlier every year, and this November is no different. Already we hear the carols on the radio, see white lights twinkling in the shop windows and see Santa popping up on every other commercial. And while it may be easy to shake your head and say “No! It’s too early!”, it’s hard not to embrace the season. Or is it? Holidays can often be hard for a lot of people; whether it’s the absence of a familiar face, dealing with a new diagnosis or just generally not feeling up to it. But, like the children in all the holiday classics, we implore you to not lose the spirit!
So, if you can’t get into the festive feeling, how can you make it through the coming weeks?
1. Decorate. Yes, this may sound like the least desirable thing to do when you’re feeling down, and you certainly don’t have to go all out, but it is often easier to give into the path of least resistance than to dig your heels in with adamant objection. If you exclude yourself entirely from celebrating, it will end up bringing you down more than lifting you up. Especially if you’re alone or missing someone, don’t let yourself feel like everyone else is celebrating except for you.
2. Stick to your guns. You may feel like you’re being a grinch, but be honest with friends or family about what your limitations are. You’re an adult, and if facing the endless parties or dinners or events is too much for you, stand up for yourself. This is your season too, and if things get to be too much, remember your a self-determinant adult.
3. Talk it out. There’s no better way to bring yourself down than to isolate yourself. Just because you don’t want the month of December to happen, doesn’t mean it will go away. Talk to friends, family, support groups, anyone! You’ll often find people are far more giving with their time than you might think (even when it’s not the holidays).
4. Give yourself some quiet time. This may sound contradictory to the last suggestion, but there’s a healthy balance between keeping busy and burning out. It’s also ok to acknowledge that you’re sad or going through a hard time. The whole month can be a lot harder to face if you have to fake it the whole way through. This is just as much your time of the year as anyone else’s, so when you feel like you need a break, politely decline and have some healthy “me” time.
5. Give back. If you’re reeling from a personal tragedy, hearing “it could always be worse” is a slap in the face. However, deep down inside, you probably know that doing something to help others when you’re feeling poorly will probably lift your spirirts. It doesn’t have to be a competition of “who has it worse” by any means, but doing something to make someone else happy, when you feel bad will improve your spirits and point some pretty good karma in your direction. And again, this is a great way to keep busy without having to talk, talk, talk or fake happiness with old acquaintances.
Whatever your situation is this time of year, remember that the underlying spirit of this time of year is HOPE. There’s something that quietly nags you, asking you to remember that there is good in the world, there can be a certain attainable peace and people can be better than you imagine.About Us, Caregivers, Diseases, Events, Media Center | Tagged chronic illness, Depression, Depression at Holidays, Loneliness | Leave a comment October 26, 2012
This week’s blog comes from our friend Scott Chippendale. He graciously allowed us to share his beautiful poem. We hope you enjoy as much as we did. Thank you Scott!
When the golden threads of twilight give way to the cold, lonely grip of night and the world seems to be an uncaring and distant place, lay your head upon your pillow and remember…..
Remember the gentle breath of flower scent…..
Remember the sweet breezes that dance through the leaves…..
Remember the soft lilt of a child’s laughter…..
Remember the cool waters cascading over the rocky stream……
Remember the loving glances of a tender lover…..
Remember the familiar whispers of childhood memories…..
Remember the joy of friendship fulfilled…..
Remember a birdsong melody caught in mid-flight…..
And when the radiant beams of gold peek through the window to wake your spirit with the promise of a new and brighter day…..
You may realize that we are never truly alone as long as we have the chance to remember…..
I am a spouse of someone that was diagnosed with Pulmonary Hypertension almost 6 years ago. Although the therapy medications worked and helped for 5 years it came to a point where the medication stopped working for him and the only thing that could save him was a double lung transplant.
He was put on a transplant list at UCSD in August of this year. Just two months later he got the call this past Monday that they had a potential donor. He cried when he heard the news. Two hours later from having had received the call we were at UCSD waiting to hear if the lungs were a match. At 11 :00p.m. that night the doctor came out to let me and his siblings know that the surgery was a go. On October 9, 2012 my husband received a second chance at life without PH. Never give up and always keep the faith.
My mom, Nelda Backus, suffers from Pulmonary Fibrosis and has been kept alive only via medications. In one month, her cost of the medication escalated from $447 to $1894 per month. My dad had always handled anything to do with mom’s medical issues, but we lost him last October. My sister and I were aghast at what the pharmaceutical company had done and didn’t know what to do to help our mother. Please understand that we are talking about a widow who receives $2013 a month in social security benefits. We started calling everyone and anyone we could that might possibly be able to help, only to be turned away time and again because her medication hadn’t been traditionally approved for her illness. Then we were fortunate enough to find out about Caring Voice Coalition.
Caring Voice did everything but stand on their head to ensure that she was able to receive the medication that has kept her with us since 2003. There was a young woman there named Tye who has held our hand through the process and who fought the battle for us! Tye called me to let me know that they would be issuing a grant for my mother that would greatly offset her costs and allow her to be able to buy groceries each month!
Our family owes the Caring Voice a debt of gratitude and we can’t speak highly enough of what they did for our mom. Please get out your checkbook and donate to the cause. They help so many people who are just like my mom, living on a fixed income with no way to generate enough income to pay the rapidly accelerating costs of medicines. I truly believe that they were put in our path by a higher power and that we are blessed to have found them!
Posted in Caregivers, Diseases, Featured, Media Center, Uncategorized | Tagged caregivers, chronic illness, Coping, Medical Bills, Pulmonary Fibrosis, Pulmonary Hypertension, Transplants | 1 Comment August 30, 2012
Our beautiful little girl was born in August 2008 with a Congenital Diaphragmatic Hernia. This is a conditon that 1 in 2,500 children are born with. She had a 50% chance of survival. Basically what happens, is that there is a hole in the diaphragm which allows the stomach, intestines, spleen and sometimes liver to move up in to the chest cavity and the lungs are not able to form properly.
We were diagnosed in utero and so we were as prepared as we could be for a situation like this. Zoe was born in Portland and within a few hours of birth was placed on ECMO ( a heart/lung bypass machine). It was touch and go several months. We were able to hold her for the first time when she was 1 month old.
Her CDH (Congentital Diaphragmatic Hernia) was repaired at 1 month old and she remained in the hospital on various ventilators and breathing machines until she was 3 months old. As her lungs got a bit better her pulmonary pressures did not. She was diagnosed with severe pulmonary hypertension at just a few weeks old. She has been on pulmonary medication since birth and at 10 months old had a central line inserted through which she recieves a 24/7 infusion of medication. She is also on various other PH meds to help with her pressures.
All these medications have helped dropped her pressures slightly but they are still way higher than they should be. She is still on oxygen as needed, mainly whenever she gets sick. Medications for PH are incredibly expensive. One of the little pills she takes every day has a copay of $3000 a month, and that’s just the copay. We have really good insurance for her, but still would be stuck paying alomst $40,000 a year for one medication. Caring Voice has come through for us and helped us with the copay for this medication our daughter so desperately needs.
Today, 4 years later, Zoe is an effevescent little girl who charms everyone she meets. She has come so far, you’d hardly recognize her from the baby who was surrounded by machines and doctors at birth. She still has a long way to go though. We are looking at her being on IV meds for the rest of her life. We are so grateful to Caring Voice and the support they provide to help ensure that our little girl can get the medications she needs and live the fullest life she can.Posted in Diseases, Featured, How We Help, Media Center | Tagged childhood ilness, chronic illness, Congenital Diaphragmatic Hernia, heart/lung bypass, Pulmonary Hypertension | 2 Comments ← Previous post