Between January 2009 and June 2009, I received 5 FIVE different diagnosis from my Rhuematologist and Dermatologist.
Never have I felt this out of control.
It's as if my body is my own worst enemy. Taking medicine alone is not cutting it, and the side effects from those are enough to make we want to throw them all in the trash.
Family history of 3 different females having auto-immune disorders, and now it's my turn.
Prayer is the ONLY reason I get out of bed in the morning. Then I see my 11 year old son, and everything turns to gold again.
Funny how things come full circle.
Hope everyone has a good day today, and a better day tomorrow.
RK
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Hi Robin - I'm glad to hear that you are able to talk with your minister. I'm sure that provides a lot of comfort.
It may surprise you, but it's perfectly normal for those close to you to not want to talk about your illness. Seems strange, doesn't it, but I've heard over and over again from people with serious illness how surprised they were by their "good friends" who just weren't there for them. So, let's start by looking at how you can be your own best friend, and where you go from there.
First, you do need to talk about this in some way. Multiple studies have proven that patients who are able to express themselves do better clinically, and we want you at your best. Journaling is a good outlet, whether just in your own home for yourself, or online in a blog that's shared with others. Second, recognize that your friends don't know how to help you or what to say and that makes them uncomfortable. It's not that they don't like you, they do. But they're as unprepared as you are to deal with this. It helps then to think about the ways, other than talking about your health, that they can support you and for you to tell them and let them do this for you. They will appreciate it if you do this and become more comfortable. I speak from my own personal experiences with the same frustrations and finally figuring out what was really going on. :-)
For support groups, I have several suggestions. Ask your physicians, or others in the medical practices, if they have suggestions or if they have a website, see if any information is listed. If there's a hospital associated with your treatment, check out that hospital's website to see if they have local support groups. Use the health events search feature on EmpowHer to look for local events. Use Google to search for groups and use keywords related to your broad categories (rheumatology, dermatology) and your specific diagnoses and your local community and nationally.
It may take some work and some patience to find the right group, but don't give up. You want to be with people you're comfortable with, and some groups just may not be right for you. If this was a business deal, and it wasn't right, you'd move on , wouldn't you? Well, when you're your own best advocate for your health, you need to be just as particular and discerning as you would in business.
If you give this a try and have trouble, just write back and let me know where you're having problems or need help. We're able to tap into a lot of different resources here, and are happy to do so.
Robin I hope you have a nice weekend and that your "best friend" treats you to something special that you and your son both enjoy.
November 6, 2009 - 5:31pmTake good care,
Pat
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Thanks Pat. I am actually speaking with my Minister once weekly, and it's helping greatly. Surprisingly, I did not have much luck finding support groups. That was the first thing I tried. I would definately take any offer of advice on how to find some. And support is definately a need right now...those that are closest to me do not want to talk about me being "sick", and that alone is more devasting than being ill.
November 6, 2009 - 3:07pmThank you for your nice reply and support. :)
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Hi Robin - When you're someone who's used to making things happen, it can be really hard to cope with a situation that's completely out of your control. Getting five different diagnoses would be hard on anyone, and it's easy to understand why you're feeling discouraged. I'm glad you're finding comfort in prayer and from your son, but you seem to be seeking more.
November 5, 2009 - 6:11pmOne thing that a lot of people have found helpful is to join a support group where you can share information, ask questions and learn an awful lot from other members. Today there are many options, including face to face local meetings as well as online groups where you can use your own name or even remain anonymous.
If you need help to locate support groups we would be happy to help. Your son is counting on you, and we'd like to help you be there for him by assisting you with resources and support. Let us hear from you.
Take good care,
Pat
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