Share your experiences, ask questions, and discover effective strategies for communicating your needs with loved ones and healthcare professionals. Together, we can make navigating this journey a bit smoother and ensure that no one faces it alone. Join the conversation and empower each other with your knowledge and support-seeking wisdom!
What are your for tips requesting support when you need it?
I have tried everything and I mean everything. Because I am partially paralyzed also, it has been very hard for me. Much harder than anyone can imagine. The only drug that help's me is Percocet.
I'm sorry to hear how difficult it has been for you.
Please know this community is always here for you. Reach out anytime.
Sending tons of positive thoughts for some much-needed relief.
~Doreen (Team Member)
Thanks Rebecca! I am approaching my 50th anniversary and we had planned to take a cruise. That was before I was diagnosed. Your post gives me hope.
Happy 50th! That's incredible!
I do hope you get to take the cruise and celebrate!
My advice is just to pace yourself, there's so much to do on a cruise don't put pressure on yourself to do it all. Take some time to just relax and recharge.
Please keep us updated!
~Doreen (Team Member)
Being Honest. I am selective about who I share with, but those around me regularly (my weekly Bible Study group) know. I started with just the name of the disease and slowly explained the constant pain that varies in intensity and the fatigue.
Because I have Multiple Sclerosis and that was diagnosed first, all my healthcare providers have blamed MS for any other healthcare issue. I was on MS drugs for 13 years before needing to go off of them. They were absolutyely horrible. Waking up every day feeling like I had the flu (and tired and angry to boot). Going off of them was wonderful - I got my life back (using diet change to alter my health). I wish I had had all the diagnostic procedures (besides the HLA-B27 test) done before I opted not to get treatment. Now I have a fused thoracic spine, and part of my neck fused. What a tragedy! I can only be on Cosentyx because of the MS. Now I have added and subtracted diet items for my AS. Before starting Cosentyx, I was in constant pain. Now it feels so incredibly better, even though I have nights, especially, that can be difficult.
My mom was a hypochondriac. Therefore it was extremely hard for me to ask for help. How I managed asking for help was to do all my research first, before I mentioned it to my husband or doctor. I have multiple health problems that are all located on gene 6. (We can't ever forget that this a genetic disease.) I have multiple health providers. I use my PCP doctor as the central place to have all my records go to. I have asked my husband to be my person to help me identify when I need extra help or extra medical help.
I have chosen to talk with others who have MS or Asthma or allergies or AS because, dang it, these medical issues are hard to deal with. Social support is really necessary when you have invisible symptoms. Years ago when I first found out that I had the AS gene, I found a site where the owner had AS. Support and exercise were his schtick. It really helped me emotionally. The site is no longer functioning.
First thing I did when I found out the AS was active and had damaged my spine was to look for a support group to help me cope. That's why I'm here. I so appreciate this site!!
Now I do exercise. I do aqua exercise (I don't have to worry about falling). I also have a group of others who have MS who exercise online. For me: more exercise, less pain. I have to remind myself consistently. And if I am in an exercise group, it makes me more accountable for me and for the group
It is my responsibility to understand AS. It is my responsibility to find support from professionals or other groups to support those with AS. I know, after having multiple health issues that I need to go to the doctors with specific symptoms or issues. Sometimes that is really hard when I have brain fog! But I have to clarify for myself before I can go to the doctor for help.
Do your research. Reach out, especially to those who have AS. Go to your doctor with notes. And, I now take my husband to my doctor visits because, especially when I am feeling bad, I do not always mention things even though I go with a list. The other thing is I may not really understand a question from the doctor or I may hear it wrong. He also provides other symptoms I forget about.
Believe in yourself. Accept yourself. Ask for help from those you trust. If you don't have that support in your life now, reach out to make connections in groups. Begin to trust yourself again. That is very hard when so much is invisible, but it makes all the difference.