I'm a Wife,Sister,Aunt,StepMom,Daughter & Christian. 52 years young,married to a coal miner. Jesus is our source of Strength and Joy!
I'm Also..1 of 5 people who have PITUITARY TUMORs. PLEASE TAKE TIME TO LEARN ABOUT THIS ALMOST UNKNOWN DISEASE. YOUR LIFE MAY DEPEND ON IT! .
If You have a story to share concerning this in some fashion please post it!
With Love & God's Blessings To You`
Cj
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First Giving? The Possibility to Make This Cause Known FAR exceed what i do alone...!
`1 in 5 people due to autopsys have pituitary tumors.`
I enjoy wire wrapping beads, pendants, a little of just about anything. Everyone especially seems to enjoy the bookmarks, Actually i enjoy making the pieces used to make jewelry more than a whole piece :). Accent beads, charms, anything someone would like to add to their jewelry yet do not have time to or do not care about learning how to make those extra's, but like to use them with what they make . I sell some here and there & put into making cards to give out so that you will have all the information needed to be Fully Aware of these tumors.
The Truth verses Many well meaning but unqulified in the public and medical community can determine life or death determining any medical attention you may need or get. I know all to well i'm treading on controversal ground, but with what i've experienced concerning medical advice, the 2 years and hundreds of hours of research, flew Twice to a Duke dr. in NC, and have been in 4 states altogether, Please Know, i do Not sit here and rehash this because i enjoy it. Knowledge is power and if One person did Not have to walk down this 7 yr journey as i have but could go right to the correct doctor, rule out these tumors, along With having all endoctrinal issues ruled out or either went to the right doctor with `Knowledge` of this & Open to treatment. "Before" your whole body has been affected; I'll shout it from the rooftops! The truth for me is, If i never had to speak of it again it would be a Joy!
With Any health issue, Please do your own research, do not take anyone's advice until you are satisfied it is correct. (Do not take my advice, search for yourself!) Many people are misdiagnosed, constantly finding themselves in the Psy. unit and on so many meds for Years, yet still wondering why nothing works & still yet changing meds. Think twice friends, I've Been down that road, & thats been over 24 yrs ago. Its a much different game now, beware of Anyone, Dr. Nurse, etc...who says they diagnos you as this or that within the first visit! (the going diagnosis now is Bi-Polar!) I hope you remember that, i know bi-polar when i see it & when i Don't. Be Very aware if you go to an ER for something Other than to admit yourself to a psy. unit and someone trys to get you on their psy. floor!!! This is Not proper protocol, Nor is anything other than a Dr. asking you if you think about hurting yourself or someone else, and do you think you need to stay with us a few days or want to try going home??? This is Without Any feeling of them wanting you to or not. I've got a `chilling` story concerning this during an ER visit in March 2010 with heart palpitations that could have turned deadly had i taken this advice. Its posted in one of my posts below. There's a very good article out about Psy. issues and Medical issues concerning medical problems overlooked as being 'only' psychological. Never take a psy. "Diagnosis" before having your thyroid checked and all endroctrinal issue's. What are your syptoms first? Do a quick search online and see Other medical issues that have the same symptoms.
I'm considering making a First Giving Fundraising Page for the `Pituitary Network Association` as they Are Non Profit. They also have been my main source of information in the past years. They started in 1992. That Really hits home just How Little the public & Medical Field know about these tumors. So many have some very Major health issues including myself even though the drs. and specialist will deny it to the end.
My life has been changed so drastically that i do not remember what `Normal` was like. But, i do have an advantage, God lets Nothing happen concerning myself that is not to bring `GOOD` out of Pain. And for that i am so Very thankful!
Note- I tend to repeat myself Alot now, so please overlook it, many times even re-reading i may not catch something written more than once. Some posts just will not make much sense, and looks like i'm just all over the place from one thought to another then back again. This is just Part of it! :)
To Support The `PITUITARY NETWORK ASSOCIATION` directly please go to their website. http://www.pituitary.org/. this is also where i found the best and most complete info in words understandable to the layperson. with Love and the blessings of God` Cj
I don't know about you but after a huge pitfall, hearing....Wait and See, it takes me a few days to pull it back together. It's more than i can soak in. BUT...The God of the Mountiantops He is also the God of the Valleys! I take Much comfort in that! He LOVES ME! Unconditional regardless of my emotions, fears, feeling like a total different person than when I came to know HIM! Sometimes its hard when harmones are flying all over the place to realize that, but you know what, it dosen't make it any less True! Feelings are so untrustworthy. All i have to do is `look back` and see all the valleys He has brought me through and been a much wiser person and very humbled. BUT...i've always been able to help someone else who is going through that very valley. We finally did get an obgyn to see me on the 20th/ harmonal treatment. I'll not give up on finding someone who will remove the tumors before they keep growing, causing more complications. PLEASE edgucate yourself on this topic! Pituitary Network Association
IT sometimes takes me a few days to get over yet another bad experience with a doctor. Endo. The one at Duke said i needed treatment; this one says not.
While making an appointment to see my MD, i asked to speak to his nurse. Hope you are sitting down... She told me she was from Dallas and all she did was assist surgeons in removing Pituitary Tumors! ITs worth a try. I'm going to call the doctors she gave me there and see if they will look at 3 mri's and Dukes (treatment) and let me know if its worth me flying there or somewhere closer to home they would recommend. I cant fly that far Unless is a for sure thing they think they need to be removed.
Yesterday i called a well know and suggested by my neighbeor who see's this OBGYN for harmones, i told them about he tumors, then she called me back, wanting to see all my medical records.
Is this going to be the catch 22??? HE is known for compassion and quality over quantity of life and will give harmones. IF he needs to see med records before deciding to see me or not, its going to be because its probabbly not in his best interset to give harmones not knowing what the tumors are doing or going to do. My hubby said, you shouldn't have told her. I'm not Making anymore trips hours away only to be told no. They need to know upfront.
IF there's nothing to these tumors, (and i know better) then why do they keep taking bloodwork to see if you have the growth harmone active etc etc etc???? Just a little commone sense. Oh...by the way, the nurse in the endo on fri. said "dont worry about it, theres nothing to them. We see them ALL THE TIME! Yeah, i bet they do since 1 in 5 have them.
I look back over my writing and i hope you can sift through it. i'm not in a hurry, maybe my mind goes faster than my fingers.:)
I know very few will read this, so i basically am talking to myself and keeping up with this as i can. Only am i doing this online so that if someone comes across it, it may help them. I wouldn't wish this along with menapause on my worst enemy.
I'm married to a coal miner in Western KY, 52 years young,our home consist of 2 cats who Think they rule the roost! My hubby and i have been married 23 years. We Love the Lord, and its real. It's a relationship with Him, not just something we `do`. Jesus makes it possible to be content regardless of circumstances; and yeah... my ugly side still comes out. But the Unconditional Love of God is open & waiting to be known by All His creation! We go to a little Pentecostal Church where people are `Real` & Very supportive of each other. If you have questions about this Jesus I know, feel free to email me! I believe nothing i hear until i research it for myself.
I have a tender heart, but am tough as nails- you just about cannot do anything to offend me. I can and Do Agree to disagree, Pray about Everything, and Know Everyone was created in Gods image and loved by Him!
We also enjoy working in the yard together, I enjoy decorating the yard with all kinds of perinials, anything with color. One day i'll tell you about `My Back Porch`. Its a very special place! :o)
Love~Cj
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