Ahhh high school. I worked at Dunkin Donuts. Coffee was free but I didn't really drink it. (Sigh for missed opportunities.) Kara was my rock. She was a fantastic co-worker. She also helped me with math :P We had many fun times. She even was so kind as to let me drive her car. It was torrential downpour the day I took my driver's exam. You could not even see out the window never mind see the road! Of course, I failed. I don't know how that person could see any better than I. Anyway.....
I went to Virginia around 1997ish or so to visit her at college. I remember walking down the cute little strip of downtown going in shops and such. Very nice place! Then....well, who knows!? She disappeared! Unbelievable!
Over a decade has flown by. Here it is 2009! I am flying in to Philadelphia tomorrow to see her! :) Can you see my smile? IT IS HUGE! I owe it all to Facebook! Thank you SO much! I looked at the weather online to see 11degrees. Ummmmm does Lafayette, PA not know I do not own a jacket? Hee hee off to pack
TLC's Blogalogue created 2009 ***If you like this header please contact: http://mastomamamakeovers.blogspot.com Yeah, I don't either.
Love
Wednesday, December 30, 2009
Tuesday, December 29, 2009
It's Getting Close!
This year we got to meet Patrick!
I kicked my smoothie addiction.
We learned important lessons.
I got to see my sis hula hoop!
I had lots o fun with Odiferous :)
We flew around the country looking for one competent Dr.
I fell in love with many but realized the one I have at home is my TRUE LOVE <3
I shot my first orchid show just for the fun of it.
We played with ice until our noses ran!
We tried things we never thought we would (chocolate covered bacon).
We cooked, we played, we laughed, we climbed mountains.....
I'm so glad it is over!
see you next year!!!!!!Saturday, December 26, 2009
Trip to Weston, FL results
I started to worry a lot about having my unemployment hearing at the same time as I had a Dr. appt. I began thinking what if I get upset and cannot drive home from Weston? Jim finally agreed to come with me. Thank God! I never would have been able to do my hearing and my triage simultaneously. Whew!
So this nice Irish gent (Jim liked that part) was nice and knowledgeable. His hands shook a lot. I wonder if that makes his job difficult. It was a task to not laugh when he was looking in my eyes. I went through all my symptoms and labs and such. He believes that my tumor is not causing me any issue. He told us that 10-15% of people just have one. It is not causing any crazy hormone issues really. It is not causing me any eyesight loss. So that is all good. He does think I have polycystic ovarian syndrome. I told my grandmother this and she got TOTALLY hung up on the word "syndrome"! As if it was related to Downs "Syndrome" LOL I have a case of insulin resistance that has been lingering. He gave me a medication to treat that. This will hopefully cause a chain reaction to all the other things that are wrong.
So this nice Irish gent (Jim liked that part) was nice and knowledgeable. His hands shook a lot. I wonder if that makes his job difficult. It was a task to not laugh when he was looking in my eyes. I went through all my symptoms and labs and such. He believes that my tumor is not causing me any issue. He told us that 10-15% of people just have one. It is not causing any crazy hormone issues really. It is not causing me any eyesight loss. So that is all good. He does think I have polycystic ovarian syndrome. I told my grandmother this and she got TOTALLY hung up on the word "syndrome"! As if it was related to Downs "Syndrome" LOL I have a case of insulin resistance that has been lingering. He gave me a medication to treat that. This will hopefully cause a chain reaction to all the other things that are wrong.
Sunday, December 20, 2009
OMG
I am wigging out. Do they still use that term? I feel like my life, my future my everything is riding on tomorrow. It is not just a typical doctor's appt. It is the final straw. It is Endocrinologist #3. #1 is too far away. #2 is wishy washy and unhelpful. #3 is part of Cleveland Clinic. He works with an interdisciplinary team. My only hope is that he will not send me on my way to find another type of specialist to solve my issue. If this man does not have any idea I may as well just give up.
I am organized this time! I pieced out the most important MRIs and labs out of my 3" binder and put them into a smaller one all in chronological order. I have my menstrual calendar for 2009 in hand with all my SIX periods penciled in. I have original copies of all three brain MRIs from Melbourne and Tampa. I made copies of all my documentation to give to him. I am ready.
I am organized this time! I pieced out the most important MRIs and labs out of my 3" binder and put them into a smaller one all in chronological order. I have my menstrual calendar for 2009 in hand with all my SIX periods penciled in. I have original copies of all three brain MRIs from Melbourne and Tampa. I made copies of all my documentation to give to him. I am ready.
Wednesday, December 16, 2009
News of the day
I just came from one of the many local food banks. I dropped off toys that my Blue Thong Society collected. It was so sad to know that our toys were the only ones sitting on the shelf as the others had been handed out and there was nothing to spare. : ( It is very tight for everyone this year! At least the 3 of us were able to help.
I have an awesome RN that I work with at Hospice of St. Francis. She was concerned about a close friend of hers that has a 5 year old and a 13 year old. She is in school FT with 2 semesters to go and is in the process of divorcing the children's father after 20+ years. They were High School sweethearts but he now has a prescription drug addiction. My friend said that her friend could not afford Christmas this year and that she went around to Angel tree type things with no success. I mentioned this to Jim and before you know it his whole company is chipping in and has the list ordered and wrapped! It makes me all warm and fuzzy! Big thanks to his peeps! This Saturday at 2pm we get to meet this family and give the gifts to Mom! I CANNOT WAIT! :)
I got my MRI results today for the repeat test in Tampa with contrast. They suggest it may be a Prolactinoma. With my Prolactin levels only tested once it is hard to gauge but they were high, although not very. Ho hum. I am sending off the MRI CD's and the reports to Dr. Brooke Swearingen in Boston. I hope for some answers soon.
I spoke to Dr. Lawson today and she was able to view my most recent of 5 Cortisol tests. 4 of them were acceptable and 1 showed that I have zero Cortisol AGAIN. I believe this is because the 5th test I was off the Cortef for 3 days while usually they tell you to stop taking it 24 hours in advance. Finally! Something might make sense. After going cold turkey off the Cortef for the last few weeks at Dr. Lawson's instruction I am being told to start taking steroids again. Hmm. I requested a lab slip to go get one last Cortisol level before going back on steroids (Prednesone now) and she faxed it over to me. Tomorrow at 8am is D DAY and then I am off the the Gaylord Palms to relax with my husband and look at Christmas lights etc. Ahhh I am looking forward to that!!!!
I have an awesome RN that I work with at Hospice of St. Francis. She was concerned about a close friend of hers that has a 5 year old and a 13 year old. She is in school FT with 2 semesters to go and is in the process of divorcing the children's father after 20+ years. They were High School sweethearts but he now has a prescription drug addiction. My friend said that her friend could not afford Christmas this year and that she went around to Angel tree type things with no success. I mentioned this to Jim and before you know it his whole company is chipping in and has the list ordered and wrapped! It makes me all warm and fuzzy! Big thanks to his peeps! This Saturday at 2pm we get to meet this family and give the gifts to Mom! I CANNOT WAIT! :)
I got my MRI results today for the repeat test in Tampa with contrast. They suggest it may be a Prolactinoma. With my Prolactin levels only tested once it is hard to gauge but they were high, although not very. Ho hum. I am sending off the MRI CD's and the reports to Dr. Brooke Swearingen in Boston. I hope for some answers soon.
Wednesday, December 9, 2009
December Dismay
I just don't know how much more of this I can take. Seriously.
I was to have an interview Friday Dec. 4th for my old job at Hospice. She never called. Monday came and went. She never called. Tuesday came and went. She never called. Wednesday has come and gone and yep, she never called. WTF
I go to meet a new patient today. He has no education. He is complaining to me for two hours and fifteen minutes about how he cannot afford his ten prescription medications. I am having a hard time being compassionate. I am having a hard time not getting up and leaving. I have six years of higher education and I take home what he takes home. Does he want to know how much my prescriptions are???? Who is going to help me? Who is going to be my Social Worker?
I go to the pharmacy and people are RUDE! I mean R-U-D-E! I speak to the manager, Ron Pieto and he tells me that he cannot make everyone happy. Is he serious? In the last month, he filled two prescriptions incorrectly. The first one I just handed back the "extra" bottle of pills quietly. I am stunned. They don't apologize...why should they? It's not like I died or something?! The next time it happens I know that this is an expensive error. I call to tell them. Ron is RUDE. I am disgusted. They ask me to bring the extra 9 vials of medication back. Hmmmm $900.....should I save their asses????? HELL NO! I donated the extra vials to my endocrinologist's office. A few weeks go by and Ron gets me on the tele. "Soooo are you going to bring back that medication like I requested?" I say "No, I left it with my endocrinologist" with a sweet tone of innocence. He brings up the fact that it is $900. Maybe he will think about this and what it is worth to another human being to be treated well.
Back in October I called Sears because my freezer/fridge is busted. Of course it is approximately 6 months old so it is about time right?! Ugh. :( They send someone out to tell me it is not really busted. I let a month go by before calling again. This guy orders 2 parts. One part came in the following week but the other still hasn't. I call Sears again to say WTF. The first customer service rep tells me the part will never come because they do not even make it yet since our fridge is a new model. This person transfers me to the warranty dept. who tells me I have not waited long enough. After 30 days of waiting for a part that is never going to come then, and only then, they will replace the fridge. I tell them that the 11th will be 30 days...it is the 8th.......I'm sure that I don't even have to tell you what their answer was. Jim gets on the phone and tells them that their rules are unacceptable. She hung up on him. The last time I called Sears (Nov 27th) they hung up on me ten times. I just kept calling back. They just kept hanging up. It lasted 90 minutes. I was stunned. Shocked. Bewildered. Have we really gotten this bad?
I was to have an interview Friday Dec. 4th for my old job at Hospice. She never called. Monday came and went. She never called. Tuesday came and went. She never called. Wednesday has come and gone and yep, she never called. WTF
I go to meet a new patient today. He has no education. He is complaining to me for two hours and fifteen minutes about how he cannot afford his ten prescription medications. I am having a hard time being compassionate. I am having a hard time not getting up and leaving. I have six years of higher education and I take home what he takes home. Does he want to know how much my prescriptions are???? Who is going to help me? Who is going to be my Social Worker?
I go to the pharmacy and people are RUDE! I mean R-U-D-E! I speak to the manager, Ron Pieto and he tells me that he cannot make everyone happy. Is he serious? In the last month, he filled two prescriptions incorrectly. The first one I just handed back the "extra" bottle of pills quietly. I am stunned. They don't apologize...why should they? It's not like I died or something?! The next time it happens I know that this is an expensive error. I call to tell them. Ron is RUDE. I am disgusted. They ask me to bring the extra 9 vials of medication back. Hmmmm $900.....should I save their asses????? HELL NO! I donated the extra vials to my endocrinologist's office. A few weeks go by and Ron gets me on the tele. "Soooo are you going to bring back that medication like I requested?" I say "No, I left it with my endocrinologist" with a sweet tone of innocence. He brings up the fact that it is $900. Maybe he will think about this and what it is worth to another human being to be treated well.
Back in October I called Sears because my freezer/fridge is busted. Of course it is approximately 6 months old so it is about time right?! Ugh. :( They send someone out to tell me it is not really busted. I let a month go by before calling again. This guy orders 2 parts. One part came in the following week but the other still hasn't. I call Sears again to say WTF. The first customer service rep tells me the part will never come because they do not even make it yet since our fridge is a new model. This person transfers me to the warranty dept. who tells me I have not waited long enough. After 30 days of waiting for a part that is never going to come then, and only then, they will replace the fridge. I tell them that the 11th will be 30 days...it is the 8th.......I'm sure that I don't even have to tell you what their answer was. Jim gets on the phone and tells them that their rules are unacceptable. She hung up on him. The last time I called Sears (Nov 27th) they hung up on me ten times. I just kept calling back. They just kept hanging up. It lasted 90 minutes. I was stunned. Shocked. Bewildered. Have we really gotten this bad?
Saturday, December 5, 2009
Details
I got an email from my PCP Dr. Rebecca Hunton a few weeks ago. She is the one that helped me on the bio identical hormone replacement therapy and then on to get my brain MRI to find out I have a pituitary tumor. She is great! She always spent a lot of time with me discussing things and teaching me. Now, she is filing bankruptcy because she spends time with her patients and she cares. We are not just a 5 minute visit. We are not just a paycheck. Unbelievable! I can still go and see her if I want to pay out of pocket and then get reimbursed from United Healthcare. This is obviously not a feasible option :(
I called the compounding pharmacy that I use to fill all the hormones to search for recommendations. They have several pharmacists on staff and they always help people educate themselves about hormone replacement therapy etc. They are very nice and knowledgeable. They gave me 3 names...one of which is Dr. Dan Hammond. I went to see him for a new-pt. visit Friday, December 4th. They told me that this appt. is to be 45 minutes long and sure as the days are short, they started paging him on his pager when we hit the 55 minute mark. After he checked his pager and grumbled they began pounding on his door every five minutes. I watched with building anxiety as his hand shook while writing my scripts. Appalling! Simply appalling! It ended up that his office called me back at 4:15pm to tell me they had forgotten a script. SHOCKER! How is a doc supposed to go thru 80 labs and MRIs and discuss options with a person he has never met?! Anyway, to break it down....he is nice (squirrelly but nice) He is in agreement with me on the facts.
Harvard and other docs say that saliva testing is crazy stuff. I disagree. I think that saliva is another way of collecting information without the use of blood. Just because it has not become used widely in our country does not mean it is not accurate. Other countries use it as their norm as we use blood. The testing that I had done initially was all done with my saliva. After determining my hormones were completely flatlined I was put on bio identical hormone replacement therapy and steroids since I was deemed adrenally insufficient. After this, everyone decided they wanted to see blood work so I had to come off of the hormones for 3 months so I could have baselines done which hopefully will be accurate after all this on and off again treatment. I went to Dr. Penny Glickman the endocrinologist and she ordered some of the labs but not all. I am not getting caught in the on again off again game once more wasting another 3 months of my life!!! I asked new PCP Dr. Hammond and he ordered the other half of the baseline tests. Whew! Thank God I know a little. Dr. Hammond wants me back on DHEA and progesterone again. He talked some smack about Harvard, Mass General and all the incompetent endocrinologists in Brevard county. It makes me feel a little good to have a choice. I don't have to buy in to something that I don't agree with. I can hunt down and hire and fire doctors as I see fit. This is the way it should be!!! I need to find out A. What kind of tumor I actually have. B. What to do about it. I have NO CLUE on who to ask this question to....maybe the Harvard neurosurgeon? Dr. Penny Glickman is sweet and all but she doesn't care to give me any input on what is next period! Everyone I talk to sends me on my way to consult with the next person. It is a sure thing that I have to read more and learn more. I cannot be caught in this pool with two different (completely) train of thoughts! I have to learn my own train of thought and find people who match and are willing to help me. I have watched Suzane Somers on TV and read little bits of her books. In a way I admire her for putting things out there. She believed in BHRT. She was tired of suffering thru symptoms and having other women in similar situations when there are ideas out there. The problem is the country does not all believe in HRT. Isn't it good to have the option to try it? If your quality of life is bad isn't it great to have something to reach out for? Who wants to have depression, weight gain, hair loss, hot flashes, missed periods if there is a way to solve it? HELLO! Poor Suzanne is such an extremest tho. She takes it all on and to the Nth degree and makes herself look like a quack. I wish she'd back it up a little so we could all respect her ideas a little more. Some of her underlying feelings have merit. The USA has to come further with their research! Well, I have to start getting ready for Jim's corporate Christmas party so I am going to post the sloppy draft....
I called the compounding pharmacy that I use to fill all the hormones to search for recommendations. They have several pharmacists on staff and they always help people educate themselves about hormone replacement therapy etc. They are very nice and knowledgeable. They gave me 3 names...one of which is Dr. Dan Hammond. I went to see him for a new-pt. visit Friday, December 4th. They told me that this appt. is to be 45 minutes long and sure as the days are short, they started paging him on his pager when we hit the 55 minute mark. After he checked his pager and grumbled they began pounding on his door every five minutes. I watched with building anxiety as his hand shook while writing my scripts. Appalling! Simply appalling! It ended up that his office called me back at 4:15pm to tell me they had forgotten a script. SHOCKER! How is a doc supposed to go thru 80 labs and MRIs and discuss options with a person he has never met?! Anyway, to break it down....he is nice (squirrelly but nice) He is in agreement with me on the facts.
Harvard and other docs say that saliva testing is crazy stuff. I disagree. I think that saliva is another way of collecting information without the use of blood. Just because it has not become used widely in our country does not mean it is not accurate. Other countries use it as their norm as we use blood. The testing that I had done initially was all done with my saliva. After determining my hormones were completely flatlined I was put on bio identical hormone replacement therapy and steroids since I was deemed adrenally insufficient. After this, everyone decided they wanted to see blood work so I had to come off of the hormones for 3 months so I could have baselines done which hopefully will be accurate after all this on and off again treatment. I went to Dr. Penny Glickman the endocrinologist and she ordered some of the labs but not all. I am not getting caught in the on again off again game once more wasting another 3 months of my life!!! I asked new PCP Dr. Hammond and he ordered the other half of the baseline tests. Whew! Thank God I know a little. Dr. Hammond wants me back on DHEA and progesterone again. He talked some smack about Harvard, Mass General and all the incompetent endocrinologists in Brevard county. It makes me feel a little good to have a choice. I don't have to buy in to something that I don't agree with. I can hunt down and hire and fire doctors as I see fit. This is the way it should be!!! I need to find out A. What kind of tumor I actually have. B. What to do about it. I have NO CLUE on who to ask this question to....maybe the Harvard neurosurgeon? Dr. Penny Glickman is sweet and all but she doesn't care to give me any input on what is next period! Everyone I talk to sends me on my way to consult with the next person. It is a sure thing that I have to read more and learn more. I cannot be caught in this pool with two different (completely) train of thoughts! I have to learn my own train of thought and find people who match and are willing to help me. I have watched Suzane Somers on TV and read little bits of her books. In a way I admire her for putting things out there. She believed in BHRT. She was tired of suffering thru symptoms and having other women in similar situations when there are ideas out there. The problem is the country does not all believe in HRT. Isn't it good to have the option to try it? If your quality of life is bad isn't it great to have something to reach out for? Who wants to have depression, weight gain, hair loss, hot flashes, missed periods if there is a way to solve it? HELLO! Poor Suzanne is such an extremest tho. She takes it all on and to the Nth degree and makes herself look like a quack. I wish she'd back it up a little so we could all respect her ideas a little more. Some of her underlying feelings have merit. The USA has to come further with their research! Well, I have to start getting ready for Jim's corporate Christmas party so I am going to post the sloppy draft....
Friday, December 4, 2009
DECISION
After much thought I decided that I am going to start posting a little more medical detail....
I have a unique story for a 32 year old woman. I have a brain tumor that is effecting my hormones and overall well being. So far, I have met with numerous PCPs, 2 GYNs, 2 Endocrinologists, and a Neurosurgeon. I have consulted people in Tampa, Maitland, Boston, Melbourne and soon to be Jacksonville and Fort Lauderdale. This has budded into an experience that is shocking to me and everyone that hears it. After trying to get answers solidly for nearly one year I have ZERO. I say almost daily "This HAS to be illegal!" After all, how can doctors take your money and give you nothing? Is that not the definition of STEALING?! Every appointment that I schedule makes me feel like THIS is THE DAY! Today I will get answers! Nope. This leads me on a horrific emotional roller coaster. I would not wish this experience on my worst enemies! I have been mentioning things here and there in emails to friends, on Facebook etc. I am now going to enter regular blogs here. I want to get things off my chest. I want to keep all my loved ones current on things. I want to put the information out there so other people can maybe take something away from my experience and feel a little less alone in their own. It is difficult to not blog the same complaints every day. Hey, I am still gaining weight. My hair is still falling out. My middle name should be Hot Flash! Truly, I get tired of listening to myself. I need to put my intentions out into the universe. I need to start reading more and educating myself. The more I learn the better my chances are to live "normally" again. ha ha It is not acceptable that I feel this way. I am done trying to convince myself that exhaustion, swelling, weight gain, misery, hot flashes, missed periods, fatigue, zero libido, facial hair etc. are a part of life! This is not OK! These damn doctors are going to figure this out and fix me or I'm going to die trying to get them to! I am going to hope too that maybe someone that reads this can suggest something for me to do. Thus far, what I am doing is NOT working. I am turning into another person. I will post pics from a year ago vs. now. I do not look the same. This journey is BS! I am fighting! I have to fight!! I don't deserve this!
1 year ago
I have a unique story for a 32 year old woman. I have a brain tumor that is effecting my hormones and overall well being. So far, I have met with numerous PCPs, 2 GYNs, 2 Endocrinologists, and a Neurosurgeon. I have consulted people in Tampa, Maitland, Boston, Melbourne and soon to be Jacksonville and Fort Lauderdale. This has budded into an experience that is shocking to me and everyone that hears it. After trying to get answers solidly for nearly one year I have ZERO. I say almost daily "This HAS to be illegal!" After all, how can doctors take your money and give you nothing? Is that not the definition of STEALING?! Every appointment that I schedule makes me feel like THIS is THE DAY! Today I will get answers! Nope. This leads me on a horrific emotional roller coaster. I would not wish this experience on my worst enemies! I have been mentioning things here and there in emails to friends, on Facebook etc. I am now going to enter regular blogs here. I want to get things off my chest. I want to keep all my loved ones current on things. I want to put the information out there so other people can maybe take something away from my experience and feel a little less alone in their own. It is difficult to not blog the same complaints every day. Hey, I am still gaining weight. My hair is still falling out. My middle name should be Hot Flash! Truly, I get tired of listening to myself. I need to put my intentions out into the universe. I need to start reading more and educating myself. The more I learn the better my chances are to live "normally" again. ha ha It is not acceptable that I feel this way. I am done trying to convince myself that exhaustion, swelling, weight gain, misery, hot flashes, missed periods, fatigue, zero libido, facial hair etc. are a part of life! This is not OK! These damn doctors are going to figure this out and fix me or I'm going to die trying to get them to! I am going to hope too that maybe someone that reads this can suggest something for me to do. Thus far, what I am doing is NOT working. I am turning into another person. I will post pics from a year ago vs. now. I do not look the same. This journey is BS! I am fighting! I have to fight!! I don't deserve this!
now
Wednesday, December 2, 2009
Who knew
When you meet people and fall in love you look for many characteristics....sense of humor, trustworthiness, honesty, attraction, being considerate.....
Who ever thinks that two people's Circadian Rhythms will be a problem?
I think that if there was one single thing I could change about Jim it would be for him to be able to get up before noon. Honest to God. Swear on my life. Biologically, we are destined to be apart. After lunch time I am useless. Granted I am trying to get tot the bottom of this. At least one of us is. I guess I should be appreciative that he allows me to spend our last $5 on medical care and does not go himself. I honestly do not think we could both afford to go....
Who ever thinks that two people's Circadian Rhythms will be a problem?
I think that if there was one single thing I could change about Jim it would be for him to be able to get up before noon. Honest to God. Swear on my life. Biologically, we are destined to be apart. After lunch time I am useless. Granted I am trying to get tot the bottom of this. At least one of us is. I guess I should be appreciative that he allows me to spend our last $5 on medical care and does not go himself. I honestly do not think we could both afford to go....
Tuesday, December 1, 2009
Back to normal
Everyone says the same thing...
Hopefully, when this all gets settled things will go "back to normal".
Back to normal.
What does that mean?
There has never, ever been a "normal".
My health has been bad. My relationships have been bad. My finances have been bad. My decisions always seem incorrect no matter how long I ponder them. It is just a big joke.
I wonder to myself out loud am I even in control? At all???? I know God is THE ONE truly in control. Do I have any say in it at all? Day after day spins to an end. They go so quickly it is intolerable. I do not wish for things to go this way.......
Hopefully, when this all gets settled things will go "back to normal".
Back to normal.
What does that mean?
There has never, ever been a "normal".
My health has been bad. My relationships have been bad. My finances have been bad. My decisions always seem incorrect no matter how long I ponder them. It is just a big joke.
I wonder to myself out loud am I even in control? At all???? I know God is THE ONE truly in control. Do I have any say in it at all? Day after day spins to an end. They go so quickly it is intolerable. I do not wish for things to go this way.......
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