Biggest challenges you face in your current journey?
Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a difference?
My biggest challenges are trying to deal with severe pain in my body. My body is very important to me. I need to get connected with support groups. Can you tell me about support groups? I'm Thankful and Grateful to God that I am still here everyday. I was diagnosed with Sickle Cell when I was six months old. I'm dealing with a negative situation right now and I'm completely exhausted physically and mentally. I appreciate all of you. God Bless all of you.🙏🙏🙏❤️❤️❤️❤️💜💜💜💖💖💖💖💖🩵🩵🩵🩵💫💫💫💫⭐⭐⭐🌞🌞🌞🌞🌸🌸🌸🌹🌹🌹🌹
, we're glad you're here! There is always support for you here. Have you also check out our sister site sickle-cell.com? You'll also find support there, as well as some disease-specific information and support. - Warmly, Donna (Team Member)
Hello. I think it’s been difficult but rewarding to navigate this journey. I look forward to support groups. Opportunity to educate, and find hobbies I can do on
My down time. I’ve had a big project but didn’t think it was possible but I think now with proper coping tools (some self reflection for me) and help building a support system little by little you can find ways to navigate and manage..Very successful, yes. It has been important to not keep explaining to those that don’t want to understand and appreciate those around me supporting me cheering for me that do! , yes that makes complete sense. It takes an incredible amount of energy explaining to people who run you in a 'justification loop'.. Buying out of the cycle is a great way to take care of you. -Warmly, Donna (Team Member)
I need people who aren't going to put MORE stress on me. My family is already under strain because my mom has 3 different causes of dementia and leukemia. It's caused a massive strain on the family just trying to help my dad find resources. I have a sister who voluntarily goes to help then blames me for not coming down to "do my part". She was mad because my father told her that he was proud of me and not her. Then there's my husband and children who have all of the sudden reverted to being sullen teenagers. I just can't take much more. I don't sleep or eat much of anything. It feels like someone has rested a building on my shoulders then expects me to carry it for them. I can't. I really just can't. My motto has always been lead, follow, or get out of the way... right now I'm at the get out of the way stage.
I'm okay Donna. I've just made peace with the fact that things will be hard for right now and that I have to express what I need during this hard time. I'm not comfortable with that... I've been pretty independent for a while but now with mom's sickness it's just taken a toll. My stubborn independence will not make mom better and will only weaken me. Now that I've made peace with this whole thing I'm feeling more confident. I'm looking to helping my dad because he and my mom have always supported me with love.
Happy Holidays Donna!
Lyn, I'm glad that you're okay. I'm glad that you've made peace with it - it's hard when you are used to be the one who helps everyone. But it is okay to ask for help. I'm wishing you lots of love and support. I'm always here to listen when you need a friendly ear.
I hope you have a wonderful joy-filled Christmas and a healthy, happy New Year. - Warmly, Donna (Team Member)
Currently my rare disease experience is the best it's probably ever been the last few years. I was diagnosed with mine in the mid 1990's, when the internet wasn't much of a thing, so support was very sparse - that was my biggest challenge. What helps me the most with my rare diseases are educating myself about them, online rare disease communities and counseling to help me process everything that comes with it. Facebook has grown to have several specific rare disease groups that I've found by searching for them by name that's been helpful as well as communities such as this one. i also have cultivated a strong support network amongst friends over the years. How are you doing with experience and what have been your biggest challenges?
