Tuesday, May 7, 2013

Big decisions

  I did it, I made the decision to have the evil twins removed. Ovaries, the havoc they can cause in a person's life, especially with Endo. I know it's not a cure, but the hope is it will cut my symptomatology in half so I might be able to get back to my life. My other half and I had a good talk last night about the impact the accident had on our lives, and how this is the step I need to take in regards to the Endo. Between the fibro, endo and bone damage plus a variety of other usually easy to manage issues, I'm frustrated and just plain worn out, I'm in a depression, and I can admit that. So it's time to do something about it. On the 23rd I go for my consult, and I'm looking more forward to that than I am to my birthday tomorrow.

Tuesday, August 21, 2012

Private side & Proud Army Mama

I have a son. He may not be mine by blood, but he is mine. He wandered into my life almost grown, and has lead me on a merry chase with the adventures he's had, but I couldn't be prouder. He's an Army Scout, and that scares me witless but this is his choice, and I stand beside it and him. This is the side of my life that most don't get to see or view because this is just so precious to me that I don't want it tarnished. He's my " miracle baby ".  I have family, and someone to tell future generations about their crazy gypsy great x whatever Gramma.   He's my promise that there IS a future and I will continue  to do my very best to be a part of it for as long as we're granted. I love you most Youngin'.

Friday, July 27, 2012

Chronic physical Illness and Depression- You are NOT alone

Ok, It’s time to talk about having 1 or more chronic condition and the impact on our emotions, specifically depression. I get it, we’ve all hit that low point where we feel overwhelmed, helpless and beyond hopeless. Then the isolation sets in. Our friends slowly disappear, our families either ignore or dispute our illnesses-
   “ it’s all in your head” “ But you don’t look sick” stop being lazy….” ect you know the drill.
   I’m not lecturing, I’m there myself.  If my endo doesn’t have me laid up, my fibro does, if the fibro doesn’t have me laid up my bone damage does, and if it’s one of those especially fun days all three are screaming.  And there I am, with this dark place creeping in because I have no help or control for what these are doing not just to my life but to each individual day. It’s scary. Here I am, I’m the strong one- I’m the one who can take on the world, but instead of heels I’m living in ragged bunny slippers.  And all I can do is cry, or try my best not to.  Then I ask for help.
     I have a set support system, not just for my physical health, but that of my mental and emotional as well.  It’s not a great secret, but the biggest tool in my arsenal is knowing I’m not alone.  And neither are you. 
“Blah blah blah counseling blah blah blah”    Sound familiar?  We hear it all the time from doctors fighting us on our DX, but seriously- wouldn’t it be great to have a professional help us with our deep seated anger and frustration?  Our physical health sucks, and we’re managing it- it’s time to take care of our emotional and mental health as well. You know as much as I do how stress aggravates the Endo bitch.  And we ALL know how the Endo Bitch and our voodoo who whos send our stress levels to the moon. Our own personal daily catch 22.  We can survive it, but better yet there are tools to help us LIVE in spite of it. The key is being able too accept help, or demand it if needed.  Some days making it out of the house is just way too much, we don't have the spoons for that. Good news! We live in the cyber age. Reach out to one or more online tools to help get you through that rough patch:

1. Support groups Online.
The best thing about social networks is we can now reach to others who are in exacly the same place we are. Maybe not location wise, but there are an estimated 176 million world wide with Endometriosis. 3 out of 5 of those 176 million have sisters conditions : IC, Adenomyosis, Pelvic Floor Dysfunction, Fibromyalgia, Lupus.... the list goes on.  You're not alone. In anything ;) So you're online searching group names and hoping when you click " join" that you land in a positive and strong place. Interview groups like you would your medical team. If you want positivety look for positivety. What you will likely find is a lot of " poor poor me" and " mine is worse than yours because" or the infamous " my treatment is the only one that should be considered and you're wrong if you don't". don't get me wrong, we can't always personally be in a good positive place- but for goddess sake why would you want to be sucked into wallowing in it?  Misery isn't healthy ;) Look for small populated online groups with good moderation. No drama allowed andplenty of spoons to share.  If you need help finding one contact
 Endometriosis Awareness Campaign       We'd be happy to help with your search.  

2. Mental Health outreach.
   Cyber age + grass roots organizations + medical proffessionals online = a chance to heal your heart.
I know I know, you hear "mental health" and it automatically translates to the dreaded " it's all in your head". Well guess what? It's NOT, but mental and emotional health is as necessary as our physical health. You can't have one without the other two. Package deal.  My favorite resources are pages on Facebook simply because I can store the links and get in contact with an actual person.
these are two of my best resources:

Grass Roots Initiative


National Suicide Prevention Lifeline

The great thing about online resources such as these, they also have a wealth of knowledge of where to go and who to call in your areas. Not just the Americas. You're worth it, you're not helpless, and I can fight for your positivity until I'm blue in the face.  But I need your help to help you. It does not make you weak to ask for help. Which brings up:

3. What do you do if you suddenly find yourself scared that you're going to get that email or phone call because another angel has fallen?  This is a hard one, in our community how do you differentiate between the daily dull-drums and a friend ( cyber or otherwise) who is suicidal? Reach out and talk to your friend, or listen no matter how hard, and though you feel like you're betraying them- contact a loved one or an organization because your worried and scared. They'll be angry at you at first, feel betrayed at first, but it will be understood later on that you love them enough to get help. It's hard, I've done it, and been branded a bully and insensitive because of it. I can live with that as long as the one saying these things is also alive to do so.  This is where your heart comes into  play. And though I know they won't thank you, I do. I aim for no Endo Angel left in the dark, and by doing this you've just  lit a candle to help them find their way back.

I know this blog post will hit quite a few people wrong, may trigger others, but this is what's in my heart as I read through news feeds and group posts and goddess help me the pain and loss coming through my awareness page's inbox.  I'm tired of burying Endo Angels, I feel helpless when I can't reach one who is struggling. We're stronger together, and only as strong as our weakest sister. You are loved, you are valued and you are NOT alone.

Wednesday, July 25, 2012

Infertility in a fertile mind

 I hear a lot of heart break in my endo community, the scare f never holding a child that's "mine". Doesn't mean there isn't love for nieces and nephews or the joy ( mixed with distress) when a friend announces their pregnancy or finding out a friend is worried about telling you because they know your struggle. It's heartbreaking. I tell my group members all the time, that if a family is your fate, it'll happen. It may be that they'll get their miracle baby ( I always hope this happens) or it may be they'll have a child walk into their life that just needs love and someone to believe in them. Wether this happens through adoption, fostering or random occurrence ( happened to me). There's more to life and family than biology.
   In 2004 my life got turned upside down, I was surgically diagnosed with Endometriosis and told my life would never be the same again. And it hasn't been. There I am heartbroken and feeling empty, and I had some wonderful people in my life who stood by me and helped me keep going. So thanksgiving comes around and for once I was truly thankful. I cooked and cooked and cooked for the horde of younging that always followed my friend and roommate home and it was a good night. So after all was said and gone, the cleanup started and that's when I noticed a youngin sleeping under my dinner table. And that was the start. ( This is where I must add if you are praying for a child in your life make it a detailed prayer for the age of the child not a generalized you might get handed a teenager)
 We've lived through a lot ,he and I, but I wouldn't trade his calling me "Mom" for anything. I love this son of mine, and sure I didn't bear him biologically, but in my heart he's mine and we all know how that works.  The thing I know about being a parent is you don't have to like your child's decision to stand by their right to make one. And what he knows about being my youngin, don't lie to mama and don't disrespect mama.  I don't tell anyone, especially him, what they WANT to hear. I will always tell him what he needs to hear. Especially the words " I'm proud of you baby" and " I love you most" He needs to not just HEAR that but KNOW that. I want him happy, and will do all within my power to make sure that happens, including telling him when he's wearing his asshat. I'm a Mom, I don't care how grown he is, I will always see him as he was when i first saw him. So we're living proof that for good or bad, you don't have to be blood to be family.

Sunday, July 15, 2012


I don't know how it's gotten to this, but it came up loudly in my household today that I have patience with my doctors and he doesn't understand how. Today is a bad bad day with the fibro and all I could do is sit there. Stoic. I am me. I don't see it as having patience, I know how much my doctor is fighting for my health. I found one of the good ones.  My meds aren't helping today, and my skin hurts so our "normal" Sunday routine had to be nixxed. The exhaustion that comes with chronic pain is literally kicking my ass today and all i want to do is cry and scream at the frustration and the pain, omg the pain. And I can't. If I start I'm afraid I'll flood Georgia. Sundays are the only day I get to leave house anymore, and not going is breaking me I think. I'm struggling with my own stairs right now taking my dog out, so i know I won't be able to do the stairs at the folks. It's not a matter of won't do, but it's all about the can't do today. So here I am, stoic.

Friday, July 13, 2012

Friday the 13th

See, this is usually the luckiest day out of any  month for me. For some reason this one wasn't.  My family had to deal with an attempted break in, someone I hold dearly was tagged by an idiot driver while out on his scoot, and a everyone I care about seems to be having issues. This just sucks. I even felt the need to apologize for my grown son's behavior- though we all know where it's stemming from. Tomorrow has got to be better, it has to be.

Tuesday, July 10, 2012

You might need a new doctor "if"

This is something my beautiful admins and I put together because honestly we are on repeat with " You need a new Doctor Honey" so here it is, enjoy.

You might need a New Doctor "IF" :

1. Instead of being able to go to your Doctor for pain control you go to the local dealer

2. You know significantly more than the person who went to medical school.

3. You've been told a Hysterectomy will "cure" you

4. You've been told Endo only exists in your vajaja and/or mind

5. You've been told you don't have Endo because the ultrasound shows nothing

6. If you've beem told pregnancy will cure you

7. If you've been told "Lupron will kill off the endo and is your ONLY treatment option".

8. If you have been told that you had a normal cystoscopy so you don't have IC

9. If you have been told "your colonoscopy is normal, you don't/can't have endo affecting your bowel"

10. If you've been told "everyone gets cramps"

11. If you've been told birth control will cure you

12. If you've been told there IS a cure

As seen at HTTP://www.Facebook.com/EndometriosisAwarenessCampaign

Positively Me

Today is under the "unique" heading I think. I am completely and totally content.  Sure i'm in triple flare, BUT I am content. Not with being in triple flare but with the fact that regardless of it I have everything I could want. No I'm not monetarily rich, but the treasures in my life sparkle brighter than diamonds.  My turtle is swimming happily in her tank, my dog and Complication are by my side on the couch and my heart is full. We've made plans, and mapped them out in a realistic pattern so at some point we can play home bound gypsies. It's the fact that he knows me well enough to know I need that. So today I can be positively me and actually envision thundering down the road on the back of a two tired beast and feeling the wind and freedom as it batters my senses. Aye, I can't ask for more than that.