HealingWell
Search Close Search
☰

Becoming more open

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/19/2017 4:15 AM (GMT 0)
I have to share this. Obviously, for years I have been really sick but didn't really know it or know why. We all know the tale. Anyway, I finally decided enough is enough and have started being more open with others, more transparent about what I'm going through. It started out of laziness. I made a Caring Bridge site to keep friends and family updated so I wouldn't have to repeat myself a billion times.

I was really nervous to do this. Everyone I've known who has had a CaringBridge were sick with something like cancer. I felt awkward, embarrassed, just weird about it. But my husband urged me to go ahead so I took a leap of faith.

Since I have done this, support from family has been pouring in. Family who really had no idea I have been so ill because frankly I hide it well. My dad is going to start helping me transport the kids to their after school activities. My mom is coming over once a week to clean. People from church and other arenas that I serve in have willingly removed some of my burdens from me. It has made me wonder, why did I hide it for so long? What was I trying to prove? That I was the perfect wife and mother? Good luck with that, no one is!

Even with all this love pouring in I still felt odd and I couldn't put my finger on it. Then it came to me. I felt like a fraud. After all, all these years I've been doing just "fine". Ha, not really but I was doing fine hiding it. Only my husband and my kids knew how bad things were. I worried that others would think I was faking or doing it for attention because I look normal. But those fears were for nothing. Sure, some might think it but who cares.

This whole long term illness thing really is a journey. And I'm learning to be soft and open and weak. It is NOT easy to cast off my illusion of health and show others my true self. But I'm growing and bending and I just wanted to share. God is faithful and he is good and he uses all this crap we go through for good.
Posted 3/19/2017 4:43 AM (GMT 0)
ChickNorris - how wonderful for you..

And wow...what a supportive group around you...really stepping up to help you.


I don't know what a CaringBridge is? Would you fill me in?
Posted 3/19/2017 6:31 AM (GMT 0)
that is nice, but be prepared they will get nervous about your disease soon. The more time passes by the more the chances some doctor of theirs will tell them "that's a made up disease your daughter claims she has, probably so that you drive her kids for free". Lyme is still officially treated with 3 weeks of ABX then u are as good as hell and that's it, remember that ... Many doctors just don't know anything about lyme, they google lyme and that's what is written on the CDC page, which is something they believe is the absolute truth coming directly from God himself...

I mean it is wonderful the family supports you but also be prepared for a different type of response in the future, better to be on guard than break down psychologically when it happens. It happens often... heard too many people on this forum , besides my own personal experience...

Hope it does not happen to you !
Posted 3/19/2017 6:50 AM (GMT 0)
Mpost - I have more people supporting me than not in my life.
I choose to believe that they will continue to support me...and until I experience otherwise - I'm not putting my guard up.

Are there people who don't 'get it' in my life? Yes.. but they are few and I just don't have much to do with them anymore.
Maybe having Lyme is allowing me to see who needed to be weeded out of my life.

I am actually surprised at who have been the most compassionate and understanding.
Posted 3/19/2017 7:24 AM (GMT 0)

Girlie said...
Mpost - I have more people supporting me than not in my life.

Me too, but in the beginning i had a lot more people that supported me than i have now. They were told by "good relative doctors" that chronic lyme does not exist, so they look suspicious when i chat about it ...
Posted 3/19/2017 2:47 PM (GMT 0)
I just explain it to those that wish to listen - and to those that don't - well, I don't need the negativity in my life, so goodbye. I even did this with my own mother - kind of cold, but when you realize that negative people that bring stress into your life will keep you from healing - well, I got hard about it. It worked out good, as my Mom has even more understanding of what I deal with now than she ever has. And, we are about to put that to the test! LOL! She's coming for a quick visit!! smhair

But, I'm so glad that you, ChickNorris, are reaching out. Seriously - you never know who might choose to look further into their own health issues, or who you might really touch with what's going on.

Besides, it's much easier to live life without that "mask of normalcy" and to just be 'real' with people. I don't complain much (or try not to), but people know what's wrong with me in my area and in my family/friends - and I sure don't miss the stress from those that have dropped out of my life - including my own brother. They choose to step away from me, so it's on them, not me.
Posted 3/19/2017 3:10 PM (GMT 0)

mpost said...
that is nice, but be prepared they will get nervous about your disease soon. The more time passes by the more the chances some doctor of theirs will tell them "that's a made up disease your daughter claims she has, probably so that you drive her kids for free". Lyme is still officially treated with 3 weeks of ABX then u are as good as hell and that's it, remember that ... Many doctors just don't know anything about lyme, they google lyme and that's what is written on the CDC page, which is something they believe is the absolute truth coming directly from God himself...

I mean it is wonderful the family supports you but also be prepared for a different type of response in the future, better to be on guard than break down psychologically when it happens. It happens often... heard too many people on this forum , besides my own personal experience...

Hope it does not happen to you !

I actually included a recommendation to watch Under Our Skin and amazingly my sister in law watched it and was disgusted at the CDC and idsa. I had expected my brother and her to be the least understanding so that was a huge surprise! My parents live nearby and they have seen my health decline firsthand. I mean, it started when I was still living with them, 15. They are just relieved that I finally know what's up.
Posted 3/19/2017 3:55 PM (GMT 0)
I'm so happy to hear that this is working out so well for you, Chick!
Posted 3/19/2017 5:09 PM (GMT 0)
I'm happy that this happened for you and I think it's wonderful advice for those just starting out in their treatment. Maybe it would help people understand what they are going thru and what they can do to help. I wasn't aware of it either. Is it something you put on Facebook?

I unfortunately, lost support from all my friends and my extended family. My husband will see people and they will say give us a call when you can go out. I haven't talked to my two best friends in over a year. One lives ten minutes from me.

But I think that this three-year long process has really helped me grow as a person and I am hopefully becoming a more authentic person than I was before. I don't worry about not making someone happy. If they don't like what I am or what I do I am okay with it.
Posted 3/19/2017 5:15 PM (GMT 0)
Here is a link to Caring Bridge for those that wish to check it out: /www.caringbridge.org/how-it-works
Posted 3/19/2017 5:24 PM (GMT 0)

Traveler said...
Here is a link to Caring Bridge for those that wish to check it out: /www.caringbridge.org/how-it-works

Thanks, Traveler.

Is this something well-known in the U.S.? Am I the only one who has never heard of it? lol
Posted 3/19/2017 5:48 PM (GMT 0)
I've never heard of it either...And Chick, I know exactly what you are talking about. Being grateful and sometimes surprised, but also sometimes feeling like a fraud...but you know why we feel like that? Because of all the times Drs. and others couldn't find anything wrong with us and went so far as to suggest we were imagining these things!

It makes us doubt ourselves!

I really needed a support system for the years I was trying to raise my daughter alone after my ex left. Even though I joined a supposedly very Christian organization the people in my particular congregation only rarely tried to help me, and even then it was for the two times I was moving. I won't go into how they failed me and my daughter....14 years of her early life and 22 years of mine. My Mom was less than sympathetic.

I don't think anyone yet would take the seriousness of my situation if I weren't medically required to be on oxygen 24/7 now. But my life was pared down to my daughter and one friend, and that's the way it's stayed for the past 11 years so for me the caringbridge has nothing to work with.

Chick, I know that this makes you feel so relieved, try not to feel like a fraud, you've been brainwashed to think that way!

Use this new gift to brighten your healing process. Much love to you girl!
Posted 3/19/2017 6:25 PM (GMT 0)
Caring Bridge has been around for many years. It is a way for relatives and friends to be advised of what is happening to a loved one.

Like Chick said, many cancer patients use it. Cancer can be a daily routine of tests, procedures and treatments and to call everyone or email is very time consuming.

And there are people that care way beyond the relatives and friends. The last caring bridge I frequented was a woman I did not know at all. But, she was the mother-in-law to a lovely friend.

So caring bridge is where you can put up a quick post that lets everyone know the status.
Posted 3/19/2017 6:49 PM (GMT 0)
Yes, caringbridge may be more widely known among the church crowd as a way to focus our prayers for eachother. And that's what I want the most anyway, prayers! All the other stuff is icing on the cake. July I'm sorry the church failed you so badly. Unfortunately the church is filled with fallen humans and sometimes it's more apparent in some congregations. I've been hurt by the church before too. That's when it's time to either work things out if it can be salvaged or move on to somewhere else if it can't. It's hard to do that in small towns though! I've moved on multiple times when things were just too painful to try and stick it out. It's been a good thing in the end. I've ended up at a large and loving church body. And I'm part of a loving homeschool community too. WA state is quite crunchy and progressive health wise so I feel like people here are more open and accepting of stuff that's opposite the CDC. I don't think I'd have the same support in the Midwest.
Posted 3/19/2017 6:51 PM (GMT 0)
Chick - off topic...but wondering how you're doing with the Rifampin and Zithro now?
Posted 3/19/2017 7:13 PM (GMT 0)

Girlie said...
Chick - off topic...but wondering how you're doing with the Rifampin and Zithro now?


Doing pretty good. Migraine right now so I'm a bit out of it. But I had a migraine the day after starting the meds which is right on par with whenever I start anything. I've had a bit of an increase in muscle and nerve and joint pain. Very tired too. There's not been any sudden and dramatic herx aside from the initial migraine.
Posted 3/19/2017 7:33 PM (GMT 0)
Hope your migraine resolves soon!

I've never had one..but I hear they are the worst!
Posted 3/20/2017 7:25 AM (GMT 0)
I wear my heart on my sleeve and stopped caring what people might think and prefer to open about it with those that may care, but still refer to it as Lyme in most circles even though in my case there are Lyme symptoms as well as Morgellons symptoms, but it is mostly under control much of the time now.

I think the M word scares a lot of people.

I completely understand but since there are few people that are willing to help us, we have to help each other by sharing information and talking it out.

Its our egos and worrying about what others may think that hinder us.

I agree with Traveler, that those that have a problem with us, its they that have a problem.

I am glad that there is no judgement here and a willingness bordering on eagerness to help. What would I do without all of you guys and gals?
✚ New Topic ✚ Reply