Friday, March 25, 2011

My Doctor Appointment

So I just realized that my last post somehow deleted my paragraph about my doctor appointment.  I find it somewhat funny, but I do apologize. It was my intention to fill you in on my appointment.


My appointment time was set for 11:50 AM.  I drove two hours to get the doctor's and arrived there at 11:30 so I would have plenty of time to fill out paper work for my new address and new insurance.  I drove up and parked.  It was a rainy day, so driving 2 hours had not been fun.  I also hate driving long distances by myself.  I also really hate driving in Fresno.  The only thing I was glad about was that at least I had been there before so I knew where i was going for the most part.  Also I was getting to meet with one of my friends who live in town.  My plan was the visit with her after my appointment so that we would have no time limit on our visit.  I opened the door and walked up to the front desk to check in.  I give my name and tell them what doctor I am there to see.  The receptionist searches through her files that she has pulled for the day's patients.  I see a puzzled expression start to cross her face as she asks for the spelling of my name. Unable to find my file or appointment she sends me to the person receptionist of my doctor.

I go through that same process again.  I give my name, my appointment time and wait.  The lady searches on her computer and finally finds me.
"Oh well I have a note here written to call you and reschedule your appointment since the doctor is in surgery."  Then she just sits there looking blankly at me.  Like I am just suppose to be like, okay, no big deal, see you later?  I am already on edge having driven through Fresno and dealing with some traffic and idiot drivers.  I take a deep breathe and will myself to stay calm, and I explain.
"I just drove two hours to get here and I never got a message that reschedule."  I get asked if the number they have on file is correct, it is, and then told to wait while the receptionist walks away.  She comes back and asks if I am willing to stay in town until later that afternoon.  Well what else am I going to do?  I drove all the way here.  I get rescheduled for 2:40.  I walk out and call up my friend to see if I can come over now.  Sadly now our time has been cut short.

I go back and arrive at 2:40, almost exactly.  I have to redo almost all the paper work, even though all I changed was my address and insurance, and by all I mean, all the questions about family history and what not.  I guess I shouldn't complain, because I was adopted so my family history is pretty easy to fill out, since all I write was ADOPTED across it.   Still it was a pain to have to redo EVERYTHING, when all they have to do is go into their computer and change a few things.  They are only going to change a few things, so why do I have to refill out everything?  I sit in the waiting room until about 3:30 before I get called back.  The nurse does her normal stuff, and then I sit and wait again.  Finally, at 4:00 the doctor gets in.   I fill him in all what has gone on my bleeding patterns, or lack of patterns, and pain levels.  He asks questions, I answer, and we end with a plan!  The first time in a long time I feel I am moving forward with my endometriosis.  For now I will start a new medicine, after I take this medicine for a few days I will go in for an ultrasound.  If my ovaries respond correctly then we will take the next step to fix my uterus to accept children.  It may take a while for my ovaries to respond.  I may have to change medicine or dosages, but we have a goal.  Monday I will be going in and running a thyroid test and some other blood work and getting a huge write up on my hormones and lots of other stuff.  This all too will be used to help figure out my dosage/medicine needs.  All to say that hopefully this either leads me to become pregnant in the next few years (yes it won't be instant) or at least give a solid no answer so I can then take care of the pain part of things.

While there are still a lot of uncertainties and I am still in pain it is nice to see forward motion.  I cannot take any strong pain medicine right now because of the other meds I will be starting.  I may be spending a lot of days in bed, but I am finally moving forward.  It may be a small plan, and I am still in a wait and see stage, but at least we are doing something and I feel like there is an end to this road now.  I will be heartbroken if the end leads to no children that I have given birth to, but I do look forward to a day of no more pain.  I have my wonderful husband, good friends, and most importantly an amazing God, what more do I need?  God will answer my prayer to someday no longer be in pain, I have no doubt of that.  For now I pray, and I try to let Him mold me into the women He longs for me to be. 

Please pray for me as there are going to be side effects that may be hard to handle, there may be many times of disappointment and for the pain I will be in.

Thursday, March 24, 2011

Time for an Update

Well time sure does fly.  I have been putting off posting for a while now.  I keep thinking to myself "I will post tomorrow."   Then tomorrow comes and I get busy, or I can't even get the strength to get out of bed to pick up the laptop and go back to bed.  I keep thinking that I posted not too long ago, but yet that time keeps going away.  Here is almost the end of March and I am finally writing.  I don't even know what to write.  So much has happened since my last post that I am unsure of where to even start.


I find it almost amusing the things I have learned about people through all the things I have gone through the last few months.  I have shared a lot about myself on the site.  A lot of my readers do not really know me, but there are some readers who do.  This is why a lot of my writing doesn't not share names or clearly give exact details.  I have still shared my feelings and my fears.  I have opened up a lot of myself and shared things I am generally uncomfortable with.  I am not a person who likes to show that I am in pain.  I prefer to hid it and to not let it control my life.  This pain and has taken control though, and it was time to share with people.  I have stopped being social because of pain, not because I am a freak.  When I can make it out and I make an effort to visit with you, I do so while in a lot of pain, even if you cannot see it.  There have been a few friends I have attempted to sit down and talk to, face to face, about the issues that I am dealing with, but those so called friends just try to ignore my comments and hope I don't mention anything anymore.  Some of my so call "best friends" have read my post, and yet have not said a single word to me.  I mention a bad situation I am in, and those "best friends" never mention a single word to me, asking how things are going.  How is it that they have fallen into the "best friend" place then?  I guess when they are the only friends you have, you think they are good friends.  When I moved here in October and have met new people.  People who are friends, but I haven't known that long are more a friend to me.  It amazes me.

These people have taken time out of their day to hang out me, to ask how things are going, and want to actually hear the truth, not just a superficial fine, so that they can complain about their problems.  I guess all this has taught me what a true friend is, and that there are other people out there who think that being a friend means that same thing that I think it does.  For my birthday this year, my husband had to be out of town.  My new friends had a nicer little gathering for me, then my lifelong friends have ever done in my entire life, probably combined.  It wasn't about doing something big and fancy, it was just about showing they cared and were my friends.  That was cool.  It gave me hope that it is possible to have real friends.

Since my last post my pain has grown to be almost out of control.  I rarely have a moment of relief.  I spent a weekend working at my old job.  It was fun to get to visit with people, but it left me in a bad state of pain.  My cramping got so intense it was crazy.  If I hadn't had plans to get stuff done, I would have spent the next few days in bed.  Instead of getting to stay in bed, I had to take my poor dog, Blu, to the vet for his last appointment.  While is pain that made me want to pass out, my husband and I had to make the decision to put my dog down.  It sucked.  I have to make that big decision when I am so overcome with pain, while watching my dog be in pain.  This was another moment in time when I realized how my "best friends" were not being real friends.  I understand it is just a dog, and it was the best choice for him, and while it was sad in the moment, I am glad he doesn't have to suffer anymore, but for my friends to completely ignore the topic, that hurts.  Life moves on though, and my next big event was close by, my doctor apointment.



For those of you that pray, I would appreciate them, since my husband and I are entering a new phase of my disease and have some big choices coming up.  Thank you for taking the time to read this.


Thursday, March 10, 2011

Endometriosis Awareness Month

This month, March, is Endometriosis awareness month.  I designed a bracelet to support Endo. and I am wearing it.  Maybe I will get brave and make more and sale them, and donate the proceeds to helping cure Endometriosis.  Here is a sample of my bracelet.  I have one side shown, on the opposite side it says "Know More."



I have spent time, and will continue to spend time sharing with you what Endometriosis makes me feel.  You can read my blogs and other blogs and learn how it has changed our lives.  You can hear about the pain it causes.  The goal of today's post is to give you and understanding of what Endometriosis is, so I will let Wikipedia.org explain the medical mambo-jumbo.  If you want to learn more it is very easy to look that information up with today's wonderful technology.  
"Endometriosis (from endo, "inside", and metra, "womb") is a gynecological medical condition in which endometrial-like cells appear and flourish in areas outside the uterine cavity, most commonly on the ovaries. The uterine cavity is lined by endometrial cells, which are under the influence of female hormones. These endometrial-like cells in areas outside the uterus (endometriosis) are influenced by hormonal changes and respond in a way that is similar to the cells found inside the uterus. Symptoms often worsen with the menstrual cycle."(http://en.wikipedia.org/wiki/Endometriosis)

 The other pictures displayed on this page show what is being done to the inside of a woman's body as they fighting with this disease. I have more pictures of what has been done during my surgeries, but I do not full access to all my pictures at the moment, but I do believe that these chosen show you enough.

Endometriosis is a painful and lonely disease.  Even though there are a lot of women in the world suffering with this, it is still scary and lonely.  There are no two cases alike, and while one treatment may lessen the symptoms for one patient, it can make things worse for the other.  The doctors are baffled by this disease.  Us patients are annoyed and frustrated for having no cure.  

I am leaving you with information and a link to an Endometriosis Research Center with hopes that you will find a way to help. 
 "Endometriosis is a reproductive and immunological illness affecting nearly 176 million women and girls around the world.  Mistakenly stigmatized as merely painful periods, Endometriosis is far more than just "killer cramps".  The far-reaching effects of this Endometriosis can negatively impact all of society.  The ERC strives to make a positive difference in the lives of all those affected by the disease.  The ERC is an International leader in raising Endometriosis awareness; providing education, encouragement and empowerment to all those living with this illness; facilitating global Endometriosis research efforts; and so much more." (http://www.endocenter.org


Wednesday, March 9, 2011

Painful Night

Tonight is a painful night.  Nights like this are very hard and exhausting.  You would think that exhaustion would lead to sleep, but usually not until the early morning while the rest of the world is just starting to wake up.  I try every trick I know to relieve the pain, hot pad, hot bath, pain medicine.  I try to lay in any position to lessen the pain enough to provide sleep.  I pray that my pain will just make me pass out.  Sadly all these pain filled nights bring are memories. Memories of sadness and happiness.

Tonight my mind is flooded of memories of my mother.  I wish that my had my box of pictures right now, so that I could scan them for you too see.  My mother was my hero.  There are times I wonder how I made it to where I am now without her guidance.  Some of you reading this were lucky enough to have met my mother, but most of you did not get to have that honor.  I wonder at times why the lose of my mother is still so hard to handle at times.  I went motherless at age 12, and now here I am 26, and I still desire my mother.  There are times that I get an overwhelming urge to pick up the phone and call my mom and share about the joys of my marriage.  I want to run to her and tell her about a horrible doctors appointment.  I cannot though.  There will always be dates that are etched in my mind forever, documenting her specials days.  Some years they go by and I don’t even notice what that date stood for, other times I am overcome with sadness.   The date of her death, the one that currently has me reminiscing is always one of the hardest dates.  I have done alright the last few years, but this year it hurts.  I want to talk to my mother about feelings right now.  I need her advice and her strength to keep my going right now.  She battled a brain tumor, and never doubted God.  She had to endure so much, and yet knew the fight would still end in death.  I need her guidance to help me fight and believe that it is still possible for me to have children. 

Another date that is hard is her birthday.  That was always such a wonderful time.  My mother shared her birthday with a wonderful friend, a second mother to me and my brothers.  They always shared in their celebration.  It was so wonderful to see those two wonderful women glowing with their friendship.  Her friend also had trouble conceiving, and of course at my young age I didn’t really understand anything that was really going on.  I do know that she had two daughter she had adopted and was raising in to wonderful girls, but of course she wanted her own.  My mother prayed for her for many years.  I can remember the day we learned that this friend was pregnant.  I do not remember the reaction of the one who was pregnant, but my mother was overjoyed.  She was so happy that her friend had finally had this dream come true.  This moment was just another time that I thought “I hope one day to be like her.  I want to share in my friends joys just as much.”

It is nice that after the years of growing that instead of being sad about her death, I can rejoice in her life.  While tonight is filled with physical pain, my brain is flooded with happiness, and I have gained the strength to make it through another night.  I have an example of a wonderful Women of God who is guiding me.  She showed me Jesus and save my life.  In death she still lives on and guides me.  Tonight in my pain, I live with hope.

Tuesday, March 8, 2011

Before Endo. Took Over


There was a time before endometriosis, medicine, pain and life when I was a happy, healthy, and hopeful young lady.  In a matter of a few years that all changed.  As you have all read, my past has not been one to instill a feeling of hope.  Despite that past I have always been hopeful and positive.  I went through a few years of endometriosis, with a hope that one day I would be pain free and able to have a children.  In the process of meeting my husband and dating, I had to share with him the truths of this disease, while it was hard to do, I never really believed that I would not have the ability to conceive.  I keep saying that I have only fought this for about 2 1/2 years, but that was how long it had been when I started dating.  Once I realized that it has actually been 6 years of fighting (and those are just the years that I actually pursued medical help) I began to lose my hope.  I looked back and saw all that endometriosis had caused me to lose.  The one thing I know I can be grateful about is that I married the most wonderful guy on the earth.  I know that no matter how bad things get I can look to him and realize that my life will still turn out all right, and I will always have love.

I remember the day I met my husband.  I tell you I had no idea that he would be mine some day.  He arrived at the camp I worked at, with his friend, to help with paintball.  The first thing I saw about this guy, even before I saw him, was some demonic looking bunny sticker on the back window of his S10.  We were at a small Christian camp up on the middle of the mountains, so this was a bit strange to see up there.  I asked his friend, who I had known for a few years, what kind of person he had brought to help with paintball.  I was told to have the owner of the truck explain it to me.  Well I am a bit of a shy person and don’t usually talk to guys, at least not first.  I tend to come across as rude, but in reality I am shy.  I was 20, and had never had a single date.  At the next meal I was sitting with my friend and his family, and the paintball helper joined us.  Here was my chance to ask him.  So I did.  He responded with an explanation about “Frank the Bunny” from Donnie Darko.  Next thing I knew my hour long lunch break was over.  I walked away finding it pretty amazing that I had just had a long conversation with a guy.  He came up a few times that year to help out with paintball, and we had some decent conversations, but the thought that we would fall in love and get married were no where near me. 

Finally in the summer of 2006 the paintball worker became maintenance summer staff.  As the summer went on and I developed a friendship with this guy, I realized that I desired more than friendship and so did a few of the other girls.  Girls who were bolder than me, and prettier than me.  There was a girl working in the coffee shop that summer, and we had ended up becoming friends and I confided in her my feelings for him.  Due to my endometriosis, I had put on some weight, so I did not look all that great.  The girl I confided got very close to him, they became really good friends.  It appeared that they would be dating soon, so I let myself forget about him.  I was hurt that even with her knowing my feelings she still had developed this friendship, but I tried to hide it, because she really was a wonderful girl and I enjoyed her friendship.  We did still do a lot of IM during the school year.  I kept the conversations causal  and tried to ignore the crush that I had.  During the winter he and his new wonderful girl, who swore they were just friends came up for a visit.  It was a nice few days with both of them.  I enjoy the conversations that I had, and I did have a friendship with the girl, so I tried to keep my jealousy in check.  My IM with him decreased, and I begin to think that I was over him.  I was still a bit jealous that he was so close with that girl, but I was over my crush.  When he showed up the next summer to work again, I didn’t have the nerves I had from liking him, and so we had a friendship again.  We started getting close and having some really good discussions.  I started to have my feelings again.  I would go home and get mad at myself for allowing my emotions to run wild.  I was so sure he had no feelings for me.  Then two weeks before we was suppose to leave and go back home, he asked me on a date.  It was a sweet date, we went to a nice dinner and a movie.  It was perfect for a first date.  The end of the night came and he walked me home, nothing was ever said about us starting a relationship.  He left and I was mad.  Not at him, but at myself.  I had always said I never wanted to date, just to date, yet here I had.  I wasn’t sure what to do.  Well I had put his weird movie on my Netflix and it arrived.  This was my last chance.  I had gone on the date, and he didn’t say anything to me.  I had to do what I could to let him know I was interested.  I invited him over two day after our date to watch Donnie Darko.  When I movie ended I wasn’t sure what to expect, but finally he started talking.  He told me that he had heard that I had a crush on somebody the summer before, and tried to weasel me out of who it was.  I broke down and told him it was him.  Turned out he already knew that because our mutual friend who I had shared with, had shared with him.  I spent a few minutes holding my breath, wondering what he would say about things now that he knew I had feelings for him.  He finally spilled to be his feelings, and so we began to date.  A year later we were engaged, and 3 months later we were married. 

I am now happily married to a wonderful man.  I may never have children, and that makes me sad.  I do not even know if I will ever be free from physical pain, but what I do know, is that I have a wonderful husband who will always be there for me.  It is funny how life turns out.  The girl I was so jealous about, is herself, happily married with a wonderful little boy and another baby on the way.  She shares about her life in her blog.  Follow her…http://shoni-walkwithme.blogspot.com/.  My last few blogs have been very depressing, and while all that I have written is true, and when it comes to my endometriosis I hold very little hope,  my life is not at all bad.  I am blessed and as long as I have my husband by my side I will have the strength to carry on.

To see my wedding pictures go to…http://www.heatherdunnphotography.com/Weddings/Dianna-and-Steven

Saturday, March 5, 2011

Life on Repeat

Every day it feels the same.  I wonder why I can’t get away. My day repeats like a song set on repeat.  I am sick and tired of hearing this music, but I can’t find the stop button.  Every night the thoughts meander back in time.  I then have to find the strength again each morning to get up and over come the memories that haunt me. 

Now reading this and my last blog may make some think, “whoa there physco, time to see the shrink;” however, I really am okay.  I have dealt with my past, and I believe I have turned out stronger for it.  I never will be glad it happened, and I will always mourn for the pain that it caused.  I move forward and carry the lessons I learned.  This post is not to share all the details of a horrible past, or to share about the things I have learned.  This is a post to share with you what this invisible disease, called endometriosis can do. 

The debilitating pain forces me to sit laying awake most of the night with nothing to do in a household fast asleep.  My loneliness is filled with thoughts of my past, or hopes and worry of my future.  When the loudness of the silence fills my ears: I write, I share, I cry, I pray, and I hope.  I sometimes manage to fall asleep after my ranting and when I awake, the song is still playing.  Set on repeat, do I dare to hope it will stop this time?  Do I dare to hope for an end to this song?

It never ends!

Thursday, March 3, 2011

Did I lose my only Chance?

It seems like it has been months since my last posting, but in reality it has only been about half a month since my last posting.  The last few posting had to do with my 30 day blog, but I am going to put that on hold for now.  I only did that so I could keep up on my blog while I was unable to push myself past my pain.  Even now as I am sitting here and writing this I struggle to find the words I want to use.  I always struggle to share what is really going on.  I know I write this blog, to help myself and for others, but it is still a challenge to fully open up.

The last few weeks I have not been doing well at all.  I walk around each day, and for the most part nobody even realizes how I am truly doing.  That is my own doing and so I do not blame anybody.  I hate that my life is ran by a disease.  I know that a lot of my readers are facing these same problems.  It may not be endometriosis that you are dealing with, but all the same, you have no control over your life.  As a good Christian women I am suppose to be okay with that, since God has control.  In the Christian world, if I take a moment to complain, or share at all my feelings of pain, and my struggles to be content with God's plan then I am not a good Christian.  Now, not only do I have to live in horrible pain, deal with the fact I may never have my own children, and have out of control hormones, but I also have to live with being judged because I have these thoughts and feelings.  It is not seen that even though I may express these feelings, I am still attempting to follow God, and to trust that this time will mold me into a women who is even more in love with God.  I praise God for the moments I have the strength to just get out of bed.  I praise Him when I am able to fall asleep and stay asleep for more than 30 minutes.  I may rant and I may share what is really going on, or what has really gone on in my life, but I know that I am blessed by and Amazing God.  I share in hopes of reaching just one person struggling to trust.  I share in hopes that I can grow.  I share because I believe God has asked me to.  I share so that God may be seen.  That all said I believe now I will share why my weeks have not been very good.


My pain has been horrible.  I am thankful to have my wonderful husband who is working hard so that I don't have to get up each day and go to work.  I don't know how I would be if I had to get up every day and make it to a job.  I am sorry for those of you that have to.  I have done that.  I did it for years with very physically demanding job.  My endometriosis is causing so many problems.  I rarely sleep, as you can see from my late night ranting.  My hormones are so messed up that I never know from one moment to the next what emotion I am going to be feeling.  I sleep so little that my muscle ache as though I am always fighting the flu.  Isn't enough that I have cramps that knock me to the ground.  My sleep habits have become something to worry about now.  I rarely get more than 2 hours of sleep at one time.   My hair is falling out in clumps.  I have long thick hair and I have always shed a lot, but this is different.  I can actually notice my hair is getting thinner.  My joints ache all the time, when I am laying in bed trying to sleep at night my knees start to express their long day, even if all I did was lay in bed for most of due to my major cramping pains.

I am in pain.  I cannot walk.  I cannot live.  I cannot breathe.  Fighting my pain.  Trying hard to hold onto whatever hope I have.  As I lay in bed losing my vision from the pain of my cramps I am reminded of my past.  I cannot help but wonder if that was my last chance.  I then begin to play the game of "if only."  If only I had: gone to the doctor, been more honest, not taken no as an answer, pursued testing.  When that dark day hit me in September I wonder if it was the moment that could have saved me from today.  That moment could have forced me to go to the doctor and the first signs of Endometriosis could have been found.  These are the thoughts that flood my dreams during the nights of no sleep and of horrible pain.  It is weird; I would rather never live that moment, the moment a gift was stolen that I had been saving for my husband.  Now as I know what I know, I realize that God hates that I have had to endure what I did, but sometimes He has to allow the bad to wake us up.  Had I been braver I could have been treated back then for my disease.  The one night didn't seem to be enough to wake me up.  Sitting in a shower as I had blood flooding out of me, which still wasn't enough. I realize that now.  I know that I am a stronger person because of what I went through.  I know that God will use everything for His good.  I know I was young, so how was I supposed to know what to do?  I had no guidance.  My mother had already died three years before that.  How was I supposed to know I needed more help?  My only advice was that all women have cramps, deal with it.  I held on to bitterness for this advice for many years, but now, I am free.  I apologize for the way I write this, it is a bit coded.  That is the way I write.  I sometimes find I can say more by saying less.  Even though this has the wisdom of today, it is written with the feelings of my yesteryear. 

I hate that I have to deal with disease.  I grieve for the children I never got to hold and will possibly never get to carry.  I worry about the ifs of my future, when I know that I shouldn't.  I want a cure that will lead to children and no pain, but I will be content with no more pain.  While I long for pregnancy, I am happy with my husband and the love that we share.  I struggle to be happy, but God and my love are all I need to be blessed in this life.  I want to live, I want to breathe, and I want to feel.  For now I have no life away from pain, I can't catch an easy breath, and I want to be numb.  For now I cannot help but wonder if I lost my only chances because I lacked the courage and the wisdom. 

I have a doctor appointment on March 21.  I fear it and I look forward to it.  I fear what it may show me, but I hope for it to lead me to less pain. For those of you, who have your own stories, please feel free to comment.  I would love to know what you do during our moments of hopelessness.
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