I have so much to write about my 30th birthday but want to start with a special surprise I received in the mail. After returning home from my birthday trip with family I received a package in the mail filled with this fun stuff:

This package arrived from my dear friend Analene. It means so much to me because it reminds me of how blessed I am with people who love me. This dear friend is also a mom to seven adorable blessings, so for her to not only remember my birthday but find time to put a package together and send off to me, just means the world to me.

Thank you Analene for your kindness, love and friendship. Your encouragement means more to me than you will ever know. I love you.

April 12, 2012

I realized that it has been quite sometime since I’ve posted an update. I think part of the reason is that I’ve got so many health issues going on at once that I just don’t even know where to begin anymore. By the Beginning of January this year I had really reached my breaking point. This was a feeling that I have never had before in regards to my health. For the last thirteen years I have dealt with the blows to my health head on, scheduled surgeries, scheduled appointments, took medications and just rolled with the punches. But I hit a point that I just couldn’t take anymore. And while I don’t like to live on pain medication, because I always try to deal with the root issue in an attempt to get off of medicines, I had to make a choice to just call a time out.

This required me to take more pain medication than I like to, but it also allowed me a break from being poked and prodded for awhile. I took the month of January off from appointments and just let my body and mind have a break. I was scheduled for one procedure in January and the morning of the procedure I woke with NO peace about it at all. I’ve never felt that way about any of my surgeries/procedures before. So I did what I’ve never done before – I called an canceled it. It could be rescheduled. That was really the day I realized I just had to call the time out.

By mid February my stomach issues were so flared that I had no choice but to obey doctor’s orders and go through two procedures. I had Esophageal Monometry done as well as an Upper GI Endoscopy with Bravo Capsule placement. This capsule would keep track of my PH balance in my body for 48 hours. These tests actually FINALLY revealed some issues. When I awoke from my endoscopy and the nurse told me the findings, she was shocked at my elation to be told that there was something wrong. What she didn’t realize is that this finally meant answers. Some light at the end of a three year dark tunnel.

The endoscopy revealed me to have several ulcers as well as a hiatal hernia. The manometry revealed very high pressures in my espophagus and revealed a condition called Nutcrackers Esophagus. This condition derived its name because the esophagus constricts so much and has high amounts of pressure – like it takes to crack a nut. This means that the esophagus does not allow things to pass thru as it should. All of this relates to the pain I’ve been experiencing perfectly.

So Now What?

I was put on acid medication to help the ulcers heal up and then sent to a general surgeon to see about repairing the hernia. The surgeon I saw was amazing but was very concerned about the pressures in my esophagus and wanted to speak with my GI before making any decisions. He left me in the room and went directly to call my GI doctor. Together they decided that it was not safe to proceed without sending me to San Fransisco to see the specialist that saw me when I was hospitalized there back in 2009. There is a possibility that a muscle in the esophagus is going to need to be cut in order for the pressures to be what they are supposed to be and if that is the case, the hernia can’t be repaired first because that would impede them being able to cut that muscle. So most likely the GI doctor in SF will opt to send me to a surgeon in the bay area who can do the necessary surgeries all together. These surgeries are very in depth and on the more serious side of things, so I am facing some pretty major stuff this summer. At this point I can’t even get in to see this GI doctor until June at the earliest – though I plan to keep calling to see if they can get me in sooner.

On top of it all my pelvic pain has also been causing me major strife. There was a period of ten days or so in the last month that I was literally in bed, barely able to function. I’ve been in contact with my doctor in Los Gatos and have an appointment next week with him. They are concerned because I’ve also been having horrible hip/low back pain and they are worried there may be a muscular-skelatal issue or joint problem going on. They called me today and gave me the names and numbers of a couple doctors they want me to see in the bay area. They are sending to a Physiatrist and Rheumatologist down there, as my local RA doctor is now refusing to see me because my case is so difficult.

Finally, I have had issues with my left knee. I have had horrible pain and trouble extending it completely and pain with walking. I was sent for a sonogram which revealed a cyst on the back of my knee. My doctor injected it with cortisone last week and said after a few days it should get better. It has now been one week and it seems like it is getting worse, instead of better. I am going to give it until next week and if it is still not doing well I will call my doctor again.

Well, if you are stll with me, thank you. I know this was long, but I know many of my family and friends rely on this blog to stay updated on what is happening with me. I just haven’t had the words and follow through to sit down and blog. I am hoping to get back into the swing of things here soon. I still want to finish up my posts I had planned for last month for Endo Awareness. There are a few posts I never got written because I was so sick. Thanks again for hanging in there with me. I appreciate all of your love and prayers.

March 29, 2012

I have a love for reading. I started reading as a hobby when I was in the third grade. I think reading was a way for me to put the worries of life aside and escape into another world for a time. I love books because you get to use your imagination and immerse yourself in the story of which you are reading.

For One More Day by Mitch Albom is a story of a son getting one last day with a loved one whom he had lost. It is a story many wouldn’t believe but the facts seem to align.

Whether you believe the story or not, this book certainly makes you think of the family in your life and makes you grateful for every moment. It makes you stop and think about how we never know if tomorrow will be our last chance to let someone know of our love and gratefulness for them. It is a story of love and loss and the lessons in between.

I’ve experienced enough loss in my life to know that if I were given just one more day with a loved one who has gone before me, there would be so many questions I’d want to ask and a million things I’d want to say to them. So I appreciated this book and the story Mitch captured.

My favorite line from the book is
“Sticking with your family is what makes it a family” because that is so true. Families need to stick together.

I’m considering doing a book giveaway….anyone interested in reading this book?

About two years ago I made my dad a Chargers blanket. It was my first blanket I ever sewed and I lined it making it double thick. It was over 2.5 yards long so it was a pretty large undertaking. I was so proud of my accomplishment and wanted to make more blankets and do more projects after having his blanket turn out so well.

But shortly thereafter my sewing machine started acting up and I became so frustrated with it I was discouraged from doing much. It was a fairly inexpensive machine so I didn’t want to have it serviced because I’d rather put that money into a new machine.

Then a few months back my mom bought me a new sewing machine. It sat in a box until three weeks ago when I finally found time and felt up to sewing again.

Anyway so upon sending the Chargers blanket to my dad, his wife, Jeanne fell in love with it. She couldn’t believe I had made it (in a nice way) and instantly asked if I could make one in the print of her favorite team – the Redskins. I agreed I would make her one but then ran into an issue of finding the fabric. You see, I live on the wrong side of the country for our craft store to carry the material. I could have ordered it special I’m sure but I didn’t need a whole bolt of it! So instead I just kept looking every time I was in a fabric store.

Finally in January I was up in Redding and decided to pop into their Joanne’s and see if they happened to have Redskins fleece. To my shock and amazement they did! They didn’t have quite as much as I used for my dad’s Chargers blanket but I just bought everything they had. Then I bought a color-coordinating fleece material for the back side. And about one month later set in to work on the blanket. I’d already missed the Christmas deadline and Jeanne’s birthday isn’t until May so I decided she would just get the blanket as a “just because I love you” gift.

As I got started trimming the fabric and pinning it together for its first stitches I texted Jeanne this pic:

As she had no idea I had finally found the fabric. I had told her I was hoping to get the blanket to her by the end of that week, but silly me totally forgot how many hours I invest in these blankets. So instead she got it about three weeks later.

Using my new machine for this blanket was amazing. It purred like a kitten! I also learned how to use this blanket stitch to sew the edging on which made it look SO nice!

I also did something different on the corners and used ironed out edging cut into triangles to reinforce the corners and give it a really cool eye appeal.

From start to finish the blanket took me almost fifteen hours! That’s right folks – 15 hours! This why crafters have to charge some “spendy” prices for handcrafted original items. Fabric isn’t cheap and by the time you add in your precious laboring hours – our work is worth the money. Besides – isn’t it more fun to have a more original item than an over produced item most likely made in a sweat shop somewhere overseas and that several people can have the same item of?

Anyway, this is my project to my sweet Jeanne. I hope you are enjoying your special blanket! (My dad texted me a pic of her curled up with it, but I don’t think she’d appreciate me sharing it with the world wide web). So instead I will leave you with a pic of my cat initiating it. Yes Jeanne, Onyx snuggled in it before you (just as he did with dad’s)!

And finally here is what the package looked like to ship the blanket across the country:

Are you interested in ordering a custom blanket? Leave me a comment and I will contact you directly.

March 26, 2012

I had all these grand plans to keep up with the blog carnival for Endometriosis this month and then some. I was hoping to really write several posts on the effects of endo not only on my life but of those it affects around me. But the reality is I am too sick to accomplish any of that right now.

I’m in pain and nauseated everyday right now. My endometriosis has flared beyond bad and I feel awful. On top of that I’m fighting bronchitis right now and I think the antibiotic I am on is making feel even sicker. I’m allergic to practically every drug there is so sometimes when I have to be on antibiotics I just have to trade one evil for another.

I’ve got lots of decisions going on in my life – trying to figure out disability and insurance and money and all that which only adds to my stress of not feeling well. I need to take care of mounds of paperwork which require phone calls and meetings and I’m not up to any of it. I had to cancel one meeting today which could have helped reduce one item off my plate but instead that just gets pushed further into the week until I can hopefully feel up to leaving the house and taking care of a few things.

Life is hard. I’m in pain and feel awful. Just being real. Prayers appreciated.

This weeks topic for Endo Awareness Week is the Mental Impact that comes from chronic illness.
March 14, 2012

There are a million different ways I could go with this. But for now I am going to post this:

What I would say to this Girl:

You are beautiful not broken.
Kind hearted and pure in spirit.

You are valuable not worthless.
Treasured by God and many more.

You deserve LOVE and not abuse;
For YOU are a new creation – a daughter of the Most High King!

Sometimes God’s plans are not your plans. This doesn’t mean dreams are unattainable. It just might mean it’s time to dream new dreams.

You were created for a purpose.
God doesn’t make mistakes.

It is okay to break sometimes.
Your Heavenly Father is waiting with arms wide open to comfort you and see you through.

You’ve been through a lot. Only you know those feelings in the depth of your soul – and you need not to answer to anyone (apart from God) on what you need to do to keep plugging along.

Sometimes in those lonely hours of the night – you need to remember that Jesus is there to talk to. And His Spirit is there to answer.

It’s okay to believe in yourself. You are gifted in so many ways. You and your story ARE a testimony and encouragement to so many around you.

You Diane, have much to offer. Remember that vibrant, confident young woman – filled with so much passion for life? She is still there – FIND HER. Don’t believe the lies.

So find your passion. Dream new dreams and please, please don’t let this life beat you. You were meant for so much more.

March 6, 2012

As I mentioned in my last post there are a group of fellow Endo Girls blogging this month for Endometriosis Awareness. Each week we will be blogging on a different topic.  This week’s topic is Physical Impact.

If you’ve read my blog for awhile or know me at all, then you may be familiar with some of what I will say here, because I have touched on it before. Endometriosis has made a huge physical impact on my life. While I was not officially diagnosed with Endo until I was 19, I had signs of it from the moment I started my period at age 11. I was the first of my friends to “become a woman” and they all thought I was so cool, but I quickly learned that it was anything but glamorous.

Each month when I would have my period I would double over in pain. Some months I would miss a couple days of school because the pain was so bad. I have vivid memories of me curled in the fetal position on my bed, screaming in agony because it hurt so bad. Around my freshman year of highschool the bleeding each month got out of control and I would pass clots and bleed through pads. After sleeping I would wake up in the morning to patches of blood on my sheets. It was awful.

Finally at age 15 my mom took me to our PCP and she put me on birth control pills to help with the cramping and hopefully regulate the bleeding a bit. I felt better on the pill for a couple of years, but by age 17 the pain was back and worse than ever. And at that point the pain wasn’t just when I had my period but started happening on an almost daily basis. So by age 18 I was sent to a GYN for the first time and after much research on my own I felt like I had endometriosis. When I told the GYN this he laughed and said “no one under the age of 26 gets Endo.” He put me on Lupron shots (which should have never happened before having a dianostic lap) for six months and said if I wasn’t better after that we would schedule surgery. Lupron was the worst experience ever and I was not better. I just felt worse despite not having a period due to the shots. The side effects from Lupron made me so sick. Finally right after my 19th birthday I had my first surgery…and low and behold my GYN said “guess what young lady, you have Endo!” I wanted to punch him in the face. He should have listened to me to begin with.

Anyway, that is kind of my back story. Fast forward to 2012, coming up on my big 30th birthday and I have had numerous lapascopic surgeries to clean the endometriosis out as well as a complete hysterectomy. Yet sadly, the endo persists and keeps growing. This has had a huge physical impact on my adult life. I am one semester shy of having my Bachelors Degree in Liberal Studies, but due to severe pain I never got to finish. I haven’t worked for three years because I am in debilitating pain every day.

I can’t keep/make plans with people because I never know when I am going to feel good enough to get out of bed and out of the house. If I do succeed and do something with friends, or even just run errands tending to what I need to get done, let alone attend a special event that requires lots of energy, I can plan on spending the next 2-3 days in bed. My body just doesn’t have what it used to to fight through the pain anymore. When I was in college I worked full time, went to school full time and volunteered as youth pastor at my church – all while fighting the pain of Endo. But my body just doesn’t have that stamina in it anymore. I feel like those years of pushing so hard just ran my body into the ground.

Traveling being sick is another part where the physical impact from Endo is great. It drains my body of energy and is super hard on me. It is hard to sit for an extended amount of time so whether I am driving or flying, I hurt after too long. I have many doctors appointments out of town and when I have these appointments, I have to schedule in extended stays to rest. I either go down early and stay in a hotel or I drive down the morning of my appointment and then stay over that night because there is no way I could make a round trip and be safe to do so.

Finally I want to note something about vacations that many people do not understand. This can fit into next week’s topic of the “mental impact” Endometriosis has, but it fits here as well. When I go on vacation (Disneyland for example) it isn’t like the rules of my body change. I don’t just wake up and then go play all day. Many mornings I still sleep in and don’t even start my day until noon. And after several hours in the park, I am ready for a nap. Often I will go back to the hotel and sleep while the rest of the group I am with continues to play. I don’t get to ever just “feel good” and keep going. I have to allow for what my body needs. Sometimes plans have to change based on how I feel. Even certain rides can’t be ridden by me because they are too jerky or exciting for my body. And by the time the “vacation” is over I am trashed and literally need a whole week to sleep and recover.

I know this was a long post, so if you are still here…THANK YOU. It is my hope that by the end of this month many of you can understand me better. I also hope that these posts will help raise awareness of how Endometriosis changes lives and why more funding needs to be allocated for research.

 

March 1, 2011

Today Kicks off Endometriosis Awareness Month. For the Kick-Off, today is Yellow Shirt Day! Yellow is the color to show Awareness for Endo. I am hoping you will be seeing lots of Yellow going around Social Media this month. Here I am sporting my Yellow Shirt.

Endo Awareness!

My friend Melinda supported me and wore yellow today as well! I stopped by her work for a picture…

Friends 4 Life!

And when I arrived at her work she surprised me with her coworker wearing yellow too! (Sorry I can’t remember your name, coworker. lol)

Endo Groupies!

Did you wear yellow today? If you wore Yellow and are blogging about it, comment below! I’d love to personally say thank you and come by your blog! If you wore yellow today to show your support and don’t blog…comment as well so I can say thanks to you also!

February 29, 2012

Hi friends. Sorry it has taken me some time to get this update posted. Turns out my tests on Friday took way more out of me than anyone could have expected. The tests went well and finally, FINALLY showed something wrong! I know to some it may seem weird that I am excited they found something wrong – but I have been sick for almost three years with this stomach issue and everyone keeps saying they can’t find a reasoning behind my symptoms. But Friday changed all of that.

I had an Endoscopy with biopsies done, as well as a BRAVO capsule placed in my esophagus which then transmitted my PH levels in my body to a device I had to keep within three feet of me for two days. I have the results of the endoscopy and will find out the results of the PH readings tomorrow, along with the treatment plan for what was found Friday, at my follow up appointment with my GI doctor.

The Endoscopy showed several ulcers, a hiatal hernia (which didn’t show in December’s endoscopy) and abnormal motility. This explains a great deal of my pain and issues. As I mentioned already, I have an appointment with my GI doctor tomorrow so I will find out the “plan of attack” is then. These tests were scheduled only to start the process of other tests that are most likely needed, but can’t be performed here. The original plans have been to send me back to San Fransisco where I was hospitalized in 2009. So we will see what tomorrow holds. I will have to post another update after I find out where we go from here.

Now onto the pelvic pain update so many of you requested on Facebook yesterday. I mentioned I was seeing my local Endometriosis doctor yesterday for the first time since the end of 2010. I haven’t seen my local doctor since then because I’ve been going to see Dr. Cook out of town. But I felt it was time to get back in with my local doctors….traveling is getting not only expensive but wearing on my body and I don’t know if I have it in me to keep traveling so far to see doctors. I have not gotten the relief  I was hoping for by seeing Dr. Cook, so I am at a loss as to what to do.

So Dr. Davis yesterday wasn’t a lot of help. It was an emotional appointment, trying to update him on not only what  I’ve been through with surgeries this past year, but also rehashing the last three years of my life…as he wanted more details than he knew before. He is sort of at a loss as to what to do to help as well. The only thing we really have not tried much is Acupuncture. There is a lady here whom he would like me to see…but once again, she doesn’t take insurance. I’d have to bill my insurance on my own…and after what my copay is and the percentage that my insurance would pay…it leaves me with a hefty bill still. Not to mention Acupuncture isn’t something that I’ve been very comfortable with.

So, basically my local doctor wants me to seek out Acupuncture. My out of town doctor wants me to see the physical therapist in his office, since the lady I’ve seen here locally didn’t seem to make much difference. Both options have huge financial obligations. And after talking to Dr. Davis yesterday, it makes sense that Physical Therapy wouldn’t help because it trains me how to help my muscles relax, but my muscles are having acute spasms and contracting involuntary…so there isn’t anything I can do to help that, except to soak in a hot tub of water.

Right now I am only surviving on pain medication between both sets of issues….stomach and pelvic pain. We will see tomorrow what the plan for my stomach issues are and then go from there to figure out the rest of it. I covet your prayers and words of encourgement during this time. I’m struggling to keep fighting. I’ve been strong for a long time but am growing weary of being poked and prodded constantly. I just want it all to stop.

More updates as I get them. Remember to wear YELLOW tomorrow, March 1 for the kick off of Endometriosis Awareness Month. Show your support for me and the 5.5 million women who are afflicted with this terrible disease. Thanks Friends!

Hi friends. Just a quick post to say that I’m going in for tests in the morning at the hospital up the hill from here. They are doing an endoscopy to take a look at my stomach as well as placing a BRAVO capsule on my esophagus that will record PH readings in my body for 48 hours. I will have to keep a transmitter for the capsule within 3 feet of me for those 48 hours and then return to the hospital to have the data analyzed.

If you could pray for God’s provision through all this and peace for me, that would be great. It has been a long two and a half years trying to get to the bottom of all these stomach issues and I am growing weary. Very tired of being poked and prodded and about ready to break.

I will write an update when I feel up to it. Thank you for all the thoughts, prayers and encouragement. I am grateful.