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
The last update did not take so this is it! I'm going in the hospital in the next few hours as a last effort in this area. Lord willing this will work, but if not, He has somewhere better. It will probabbly be one from http://www.pituitary.org/
My dad is at home dying of cancer, it came back Very suddenly, please keep him, my step-mom and the rest of the family in NC in prayer. Also their church is a tower for them, they lack for nothing. God is the only Anchor during the storms in My life! The only One true For sure Cannot Lie, will be there, never sleep or slumbers.
Love and blessings, Cj
I'll post only once or twice a week until some kind of treatment starts. The treatment will be harmonal to begin with i suppose disregarding the tumors. I was told i would have to be on harmones the rest of my life. Thats just fine by me, Quality is more important than Quantity if all i'm doing is lying on the couch trying to stay so still as it helps keep the hearth palpitations a little calmer. This last time i laid on the couch 4 days and nights, getting up Only when having too.
I write this in hopes that if only `ONE` person comes along and reads this and can relate, and gets Help, Its worth it! I sure don't enjoy sitting here doing it.
Until i get some help here, being online makes me nervous, so i try to stay away from it.
I'll be seeing the OBGYN who hesitantly said he would see me for treatment of the ovarian failure and start harmones on the Oct. 20th!
Any and all prayers are Much appreciated for this Doctor & everyone concerned!
Diagnosis- Ovarian Failure. And when did this start? I'm 51. The first tumor found in 03 was lactating just as these are and not much; i was told it kicked me into Early Menapause. At first i thought" Ok,,, Menapause. Whats New! Being Mindful now i've been researching these tumors over a year. My experience with doctors has Not been the best and a couple of times almost deadly from PSY. perscriptions, they were trying to help the heart palpitations but there were some severe reactions.
So my first thought, i'm not researching anymore...at all! I can only look up these things no more than 15 minutes; for me its just very stressful. But my curiousity got the best of me.
There's more to ovarian failure than menapause. Looking back, i can see a timeline between Panic Disorder in early to mid 20's to what most likely was Ovarian Failure around 1997. I'd not had a panic attack since 1987. They started slowly and progressively got worse. So who do you get sent to??? Another Psy. More Meds, i've probabbly been on every psychiatric med available, None stopped the heart palpitations; yet i knew others that the same meds helped.
The palpitations got so bad in 1993, they were nonstop 24/7 for 7 weeks. We made a major life decission and moved to NC, where i came from thinking being around family would help. It didn't. 2 1/2 years latter we moved back to ky.
The hotflashes turning into all day all night 7 days a week and the palpitations were doing the same thing at the same time. I see a major timeline here.
This is Ovarian Failure Please read it! Knowledge goes along way in taking charge of your Own healthcare. And it all started from the Pituitary Tumor. You may already be dealing with these tumors, and know much more than i ever will, but my goal is to make everyone i possibly can `AWARE` of something they have never heard before. No one should have to suffer like this being basically homebound due to what doctors Dont know, they don't communicate with each other; at least where i live.
I don't know what i'll hear on the 20th from the obgyn concerning `Treatment` the endo at Duke sent him, but i do have an appointment tomorrow with my MD, he has the records and i'm going to ask what the treatment is. It should be (hopefully) harmonal. QUALITY OF LIFE IS MUCH MORE IMPORTANT TO ME THAN QUANTITY. Only a FEW doctors understand that.
When i can function enougth to persue getting these things removed, i'm going to. They have already caused enough trouble and years of wondering where the person who lived inside me went. The risk may outway the outcome but at this point thats something i'm willing to take. God can heal these tumors, or he can work through a Qualified doctor who specializes in this . After being in 3 states pituitary.org lists University of Kentucky and a few hospitals in Virginia.
Ok, been on here too long, but have a GREAT week and may God Bless You!
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
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