I'm not sick, I have a chronic disease.

I am not running a fever, I do not have a cough. I am not weak because I was up all night with a stuffy head or nose. To look at me, you would not know anything was wrong with me. You can't see these diseases, you can't witness what they do to me.

Why do I say the above? Because, I am sick of hearing that I am sick, or I am "not right" or I am "weak". Let me assure you, I am in pain, yes, but I continue my daily life as much as possible without complaining. I get up, I shower, I take my children to school, I work if I am able, I attend pool workouts and physical therapy. I may move just a bit slower, but chances are, I will keep up with you. Why? Because it is what I do, it is how I am. I refuse to slow down, I refuse to stop doing something I love because you see me as "ill" or as "weak".

I do all the daily things you do, I simply do them with pain that sometimes drops me to my knees. But I continue, I don't give up, I don't give in. I am not weak, I am strong. I am stronger than those that have no mountains to climb daily, and who can get from point A to point B without feeling their insides are being twisted in barbed wire.

Pain. The nurses at the ER will ask you "On a scale of 0 to 10, what is your pain level?" And you answer with your number so they can assess your urgent need for pain intervention. When I go to the ER and they ask me that question, my number is always lower than what they would expect. The racing heart, the sheen of sweat on my body, the high pulse tells them I am in excruciating pain. Yet, to me it is not horrible, it could be worse. Why? Because I am used to this pain. It is daily, it is nightly, it does not end.  Why do I do everything I can to hide the pain? Well like every woman with this damned disease, we don't want your pity. We don't want your "understanding". We just want to live our lives, the best we can, without judgment. Weak. Not even close. I've had a child, all natural, and I would do that everyday for the rest of my life, than to feel this pain. Yet, I still function in life.

I hate, HATE, being treated differently, I hate admitting I have these two diseases. Endometriosis and IC are horrible, painful, and no one can do anything to help. But call me weak, think of me as needing pity and I will blow up at you. I don't want your pity, I don't want you looking at me as though I might fall apart if you touch me.

I am tired of being told that people think I am weak. I'm angry right now. Very angry. I am sick of the bullshit. I am sick of needles, of ER visits, of Dr visits, of PT, of insensitive assholes.  It is not okay to dismiss me, or any woman with this in her life, as simply "weak,sick, not right". How dare you!

I have my support team, I have amazing Dr's to help me. I have days when I want to scream at the top of my lungs in anger over everything. I accept this is my life, I accept I will never feel 100% better and pain free. But that does not mean I have given up. It simply means, I'm living my life to the fullest, and my life happens to include two chronic pain diseases. They are not my life, they are just a part of my life. If you can't see that, then step away and make room for those that do and can.

It's truly that simple, if you make my life more complicated, well you have to go, because things are complicated enough. Rant over.

My Surgery Report....

Finally, I have been given my report.

Room #: Attending: Frye, Lance MD

Admit Date: 07/29/14
Dischg Date: 07/29/14

DATE OF SERVICE: 07/29/2014


PREOPERATIVE DIAGNOSIS:
Endometriosis, site unspecified.

POSTOPERATIVE DIAGNOSES:
1.  Pelvic adhesions.
2.  Endometriosis.
PROCEDURE:
1.  Diagnostic laparoscopy.
2.  Fulguration of endometriosis.
3.  Peritoneal biopsy.
4  Lysis of adhesions.

FINDINGS:  Normal right ovary.

DISPOSITION:  Stable to PACU.

ESTIMATED BLOOD LOSS:  5 mL.

IV FLUIDS:  1000 mL

URINE OUTPUT: 100 mL

DRAINS: None.

PROCEDURE:  The patient was seen in the preop area.  Risks, benefits, indication
and alternatives of the procedure were reviewed with the patient.  The patient
agreed to proceed and signed the consent.  The patient was taken to the OR with
IV fluids running and SCDs to lower extremities and anesthesia was obtained
without difficulty.  The patient was placed in the dorsal supine position.  A
sponge stick was inserted into the vagina for uterine manipulation.  An
approximate 2-cm incision was made immediately inferior to umbilicus with a skin
knife.  The superior aspect of the umbilicus was grasped with 2 towel clamps.
The abdomen was tented up and Veress needle was inserted through the incision,
Veress needle felt to be in place, the position was checked by placing saline
drop test.  This was seen to further drop into the abdomen so the needle was
connected to CO2 gas, this was started at low flow setting and it was seen to
flow freely, it was then advanced to the high settings.  Abdomen was then
insufflated to an adequate distention of 15 mmHg.  The Veress needle was then
removed and a 5-mm trocar was then placed.  Laparoscope was inserted through
this port and then two 5 mm trocars were inserted in the bilateral lower
quadrants under direct laparoscopic visualization.  Trendelenburg position was
obtained to facilitate moving the bowel from out of the pelvis.  Next, a
atraumatic grasper was used to facilitate movement of the bowel out of the
pelvis, it was noted that the patient had multiple pelvic adhesions which were
lysed using scissors.  Hemostasis was noted.  Full examination using laparoscope
of the posterior cul-de-sac as well as the peritoneum in the pelvis was noted to
have multiple vesicular lesions.  Atraumatic grasper was placed on the vesicular
lesion and removed with scissors.  The specimen was sent to pathology.  Using
fulguration at the site of biopsy, hemostasis was noted, other areas suspicious
for endometriosis were fulgurated as well.  The pelvis was then copiously
irrigated with the suction irrigator and irrigation was removed, it was noted to
be completely hemostatic.  The ports were all then removed under direct
visualization.  The camera and laparoscopic ports were then removed and the
abdomen was desufflated.  All the ports were closed and the patient was taken to
recovery room in stable condition.  The patient was discharged home today with
ibuprofen and pain medication.  The patient before surgery as well as family was
discussed to have an appointment with Dr. Frye for postoperative check.


__________________________________________
Larissa Smith DO

__________________________________________
Lance T Frye M.D.
-----
Fulguration, also called electrofulguration, is a procedure to destroy and remove tissue.
vesicular lesions endometriosis

The Other Side Of Me

As I sit and watch the sun give way to the moon,
I can feel it inside, the caged woman will emerge soon.
For so long now she has laid to sleep, in the deepest parts of me,
She can hear everything, and there is nothing she can't see.
From her place, in my mind and heart, she awaits,
for the time when she must emerge and change the fates.
Do not mistake my silence thus far for weakness or fear,
I have simply kept this side of me enclosed, but the time is near.
She will once again stand up , and shake off the dust which is you,
and once again, she will shine through.
For I can only hold her back for so long before she comes to light,
sometimes I hold her back only a little, others with all my might.
Strong, and able to stand alone is she,
soon you will understand, all this time, she was me.
Simply kept at bay to keep things calm, easy going,
little did you know of the anger and hurt you were sowing.
Now what will you do, when she comes forth to speak,
when at last you and the strongest, darkest part of me meet?

My Nephew Was Murdered.

My Nephew Was Murdered

I am not sure I've ever spoken all that in one sentence out loud, before. My 1 year 10 day old nephew was murdered. Taken from this life, on purpose. Not in a car accident, not by a mistake, but murdered. Murder, that is two loved ones in my life that were taken from me in such a way. My nephew, a sweet, round cheeky boy, with the most beautiful blue eyes. He just took his first steps, had his first Halloween, he and my son were 15 days apart in birth. My nephew was murdered.

Someone made the decision to end his life, take his ability to grow up, grow old, and experience everything he could in life. He was murdered. He didn't die from old age, he didn't have poor health, he didn't choose to leave, he was taken. By who? Well, we all have our thoughts on that subject, but truth is, we do not know, and we may never know.

When we learned a few months after his death, when the reports arrived, that it was a homicide, I didn't want justice, I was not screaming for the head of whoever was responsible. I knew that them serving jail time, or being put to death, would serve as nothing to my heart. I wanted to know one thing. WHY?
What motivated a person to crush enough painkillers to kill more than one adult, and give them to a one year old cheeky little boy? What kind of monster does this, then attends his funeral as though they loved him. I say that, because everyone with access to him was at his funeral. I remember standing up on the stage to deliver the speech and poem my sister requested I compose, and seeing faces of everyone that "loved" him, and everyone that was close to him, that day, the last day. I looked at them as I spoke wondering, who and wanting to just blurt out.. WHY????

October 25,2003 my nephew celebrated his big one year birthday. November 4,2003 he left this world at the hands of a cruel person.

Why am I sharing this. Because you parents need to listen up. You need to understand that your ONE job in this world is to protect your children!

Garrett was left with the next door neighbor, a friend of my sister, and his regular babysitter. A known pothead and allegedly a dealer of narcos. His father was in another city after a accident requiring a hospital stay. His mother, my sister, took Garrett to the sitter next door, and asked them to keep him overnight. She wanted to drive to OKC to see the father. The next day, the sitter went to wake him, he had an ear infection so he had meds that my sister left for him to take, and they were not concerned that he "didn't seem right" because of the infection. The husband checked on him and saw he was blue. He was gone.

My sister did indeed go to OKC, but never went to see the boyfriend/father, she instead went to her mother's and no one knew that. No one could get ahold of her to tell her. She arrived home late that night and the sheriff told her.

What happened? I don't know. I do know, that my sister left her child with a drug addict, and a person she herself had purchased drugs from in the past..... so the point.... if you have a child, and you can't be responsible, give it to someone that can. Before that child ends up in a two foot long casket. They should not make them so tiny. If you see a child who is in danger, alert the authorities. Save a child from torment, abuse, and possibly death. DO SOMETHING. And for pete's sake, protect your children. Do your job!

On The Path To Healing

While endometriosis currently lacks a cure, I have, since September 2013, taken many steps to help lessen the pain. My journey has not just been physically damaging, it has been emotionally damaging as well.

Learning of different diagnosis, on top of the already endo and adeno, was very scary. But at each turn I kept telling myself, " I can do this, it was always there, I just didn't know it had a name." The most frustrating parts, are the illnesses caused by the treatment of the endo. Lupron, hysterectomy, surgery (times three) and procedures. Now I am step by step getting better, getting stronger. During my hysterectomy and excision in the last year, I have lost a lot of core strength. That is partly why I am going to physical therapy, I am also hit with Greater trochanteric bursitis, bone density loss, and blood supply loss to the bones. I am working in PT to strengthen my core, to keep my hips in the right position and keep my pelvis from tilting, or twisting again. I am also trying to rid myself of Iliotibial Band Syndrome. Once I get these things completed, life will be much easier to manage.

It truly helps that my physical therapist has a sister and her mother who have endo and adeno, so she is so sweet, so understanding and when I groan from pain, she says, "Keep going, or quit today?" My reply is always "Let's make this my bitch." She smiles and she keeps pushing me until I am ready to fall from exhaustion. It is a good thing. Many would stop, afraid to hurt me more, or out of pity. I don't want pity, I want LIFE.

So PT twice a week, everyday at home, and water therapy three days a week. Continuing my diet to try and limit things that set off my endometriosis and my IC. But more than just working on getting my physical well being back, I am working on getting my emotional back as well.

What those who are closest to me know, is how much trauma, emotionally I have been through since September of 2013. I am just now starting to talk about the full extent of what all had taken place. I spoke openly about the loss of my cousin, who was essentially my twin growing up. She as brutally murdered by her abusive boyfriend. Then, the extremely painful loss of my Morgan to cancer early July. I never dreamed how much that would hurt. I felt as though I lost my own child. So much has been effected by her death. Death, what a final word to speak. Going to football games has lost it's excitement for me, it was where I met her, where I spent time with her. I sit in my seat in the stadium, and find myself looking where she should be, and she is not. I attend PT at the hospital where she spent, well most of her life, and where she passed away. I am still trying to make my world stop spinning from this loss.

The rest of the emotional pain, I still do not speak out loud to many, though some of you have been wonderful in listening, and advising on the matter. I truly appreciate those that have. I am still coming to grips with the reality of the last year, but I am trying to face it all head on. But that is rather difficult.

The last week, I have been told something that I guess I needed to hear. "I understand." Those two words were very powerful. Not that no one has said that, but it is usually followed by more words of how to get over it, to get better and such. This was very simple. "I understand." I am grateful to this person for their addition in my army of supporters. Not people who sugar coat things, or lie to me, but people who understand and help when it's needed.

So the message today is.. I am healing. I am going to be okay. I am making Endometriosis and all other diseases my bitch.

Life As I Knew It

So, it has been a while since I have updated my journal. Reason for that being, I had a lot to come to terms with. In the last month I have seen two orthopedic doctors, my endometriosis specialist, my PCP, had an MRI, a GI specialist and a urologist. So, July 29th, Dr. Frye did my endometriosis excision and adhesion removal surgery.  I still had a lot of pain, which we learned was from a bladder condition called Itersistual Cysitis (IC). After trying everything I could, including medication I was allergic to, we decided to try a cystocopy to relieve the pain and look for hunters ulcers.

I attended the opening game for Oklahoma State Football August 31, upon returning I had burning and pain in my hip so badly I could not walk. After seeing my PCP and seeing a specialist, then the MRI then another specialist, we found several things happening. I have osteoarthritis in my hips, more so the left than the right. I have brutisis in the hip as well. A large amount of time released steroid was injected into my left hip, inside the joint, to help with the inflammation. There I learned I have arthritis in my back as well. Then the diagnosis of degenerative disc disease came yesterday. Something I have feared most of my adult life, as my father had this, and I watched what it did to him.

Life as I knew, is how I titled this entry. Why? Yesterday was the 3 year anniversary of my mother figure, Mama Lizzy, losing her battle with cancer, and the next day I met Morgan, who lost her battle of cancer early July of this summer. I looked at the date, then thought how long ago that was. Long ago? No. Only three years, but it seems a lifetime ago. So much has taken place in those three years, that is just felt so different, so long ago. I was going through several rounds of testing for allergies, bone marrow aspiration and biopsy, and sickness after sickness. Though it was a great year as well. Our football team was breaking records every game, we went to the Fiesta Bowl in Arizona, stayed at a beautiful resort. Things were great. Everyone in our group healthy and happy and enjoyed the trip and the game more than we ever had before.

Now, I open my eyes to today. I've lost my Lizzy, I've lost my Morgan, my health gets scarier with every Dr visit. We don't go on group trips because our dearest Tessa is now fighting for her life in her own battle with cancer. So much has taken place in three years, life altering events, illnesses, loses. I keep waiting for the room to stop spinning and things to slow down, just for a moment. But, that won't happen. I must find my footing in this spinning world, and hold on tight to those that support me and help me stand up when the world is trying to force me down to my knees.

Everyone has those moments, where you look back on your life and you kind of thought, wow, did all this really happen? I myself had that moment last week. When a Dr looked at my medical chart and then at me with, what was that on his face, concern? Pity? Kindness? When he spoke, something inside me just, moved. It seemed his words were hitting deeper than anyone's had ever hit before. He asked, "What's it like not being able to do the things you used to do? Frustrating?" I looked down at the floor and replied "Angering, frustrating, it sucks." He then asked "I look at your history, I see PCOS, Adenmyosis, Endometriosis, Intersitual Cysitis, now arthritis in your hips, and back. These are all chronic pain illnesses. They don't go away, and they don't stop hurting you." I said. "It's okay, we all have our issues." He then asked "How are you doing with all of this. Because you have been through a lot." As he continued to ask questions his final statement was "I am here for you, to help you, and I don't know if anyone ever told you this, but you have been through hell, and it's okay to stop and catch your breath, those around you will hold you up until you can stand again."

Those words, that conversation, that man struck a chord that no one had dared to go to before.  Now, I have spent the last week thinking about what all he said, everything he asked, and answering them only to myself. So, how am I doing with everything? Well, I have my good days, mostly I am still me, but I have my days where I just want to have a pity party. Those days I work extra hard to find a way to kick my own ass and get moving. One day, maybe I will be able to tell the truth about how I feel, in all depths of this adventure. But, right now, I can't bring myself to let those thoughts go past my mind to my hands to type, or to my lips to speak.

I go forward, collecting diagnosis after diagnosis, at least now I know what all I am fighting. And if you have read this far, then you will be one of the few to know that a month ago I had a biopsy done in some areas of my skin to learn that I have skin cancer as well. It is treatable, and I am currently going through those steps. If you saw my calendar on G Plus a few days ago, every Friday is a treatment.

Life as I Knew it, has changed, but so have I. And with each turn I adapt, I change, I become what and who I need to be to survive and to remain kind, loving, and open minded. Love to you all. And thank you for your support. Always!

Five new badges of courage, a little update

I have been holding off posting in my blog for two reasons.

One, I was in too much pain following an inflamed vein from my iv. My arm and hand were so swollen and painful I had to take heavy medications to control the pain, and I am still struggling with it. Two, I have not spoken at any real length with my Dr about everything that was done during the surgery, what all he found, or anything like that.

What I know:

I woke up in recovery with five new holes in my lower abs; belly button, center,left and right side of pelvic area. I can't go into detail at the moment about the rest following my waking up and being discharged. (let's just say it was not good)

Endometriosis was found, adhesions removed, and everything was sent off to pathology.

I was given instructions to continue as normal the following day. Which I have sense learned was not meant for me and my type of surgery. Again, more on that later.

Thank goodness I had access to another Dr that could help me out and help me understand what was going on.

The first three days I felt amazing, no pain, and thought, "Wow, this is awesome!" day three I woke in horrible pain, arm and hand swollen so much my skin was shinny from being so tight. Phlebitis in my right arm, I was advised to take anti inflammatory meds and put on warm compresses. Later I had to see my PCP who gave me steriods to help as well and found three tiny clots in my hand from the iv damage. (My veins were too small for the 18 gauge needle they wanted to use, they failed on one hand, then went to the right hand and had to use a 20 gauge needle and it was still too big, causing some irritation, then what happened in recovery just ticked my vein off even more) Later in the day, after the ER I noticed my lower body hated me. It hurt so bad I cried thinking, it didn't work!! But I learned the Dr used a long last anastetic on my organs to keep them pain free for three days after surgery so I didn't have to use so many narcos. (no one told me that until almost two weeks after surgery)

My pathology came back with lots of endo, buried deep in my adhesions, pouche of Douglas, ovary, bladder, all over the place. The depth, severity and such suggests stage IV endometriosis (persistant, and microscopic were used to say what was inside me)

Reason I wanted to update today:

Yesterday I had six hours of pain free time. I was so excited. No narcos, just Ibuprofen 800 as needed. I woke today, with little pain, mostly surgical stuff sore. Then I took a shower and came to understanding, when I put my leg down after washing it.. NO ripping,buring searing pain came to my pelvis!!!!!!!!!!!!!!!!!!!! Holy mother of milk, I am a happy girl. So while I am still in pain, and my body still hates me, it looks like we might be on speaking terms again!

The Ugly discovered a few hours ago... kidney infection. I'm on drugs to help get rid of it. It's painful, but my kidneys are so tender that I caught it early. Things are going good, I am still in pain, I am still healing, I have a very long road ahead, but I am seeing improvements!

That's me, I'm Fighting Endometriosis, Join Me?

Day after day, I read your stories. Your pleas for someone in the medical community to simply listen, not treat you like you are insane. Pleas for better awareness, any awareness for the disease that has completely changed your life. Pleas for one day of pain relief, to just feel "normal" (whatever that is) for just a day to replenish your faith in yourself, in life. Pleas for someone to simply understand that handing them that gallon of milk is rather impossible because your spoons are gone. Pleas for support, for a loving shoulder to cry on, then a strong hand and heart to lift you back up and help you find your way.

Oddly, your stories, are my story. I don't wear yellow, and endo fighting shirts, or awareness car decals for just you, I wear them for me. A fact that jumps out at me now and then, kinda sneaks up and bites me in the bum. It reminds me, "Hey, you are not just supporting these ladies you love and feel so much for, you wear this for YOU. YOU have this same disease, this fight is YOUR fight,too."

Why do I need to be reminded of this? Because my entire life I have worn this color for that person, and raised money for this person, to help with their fight against cancer or anything else they need help with. For the first time, I'm not just wearing a t-shirt that says "Endo Warrior" "End Endo Pain, We need a Cure" or "Powerful Endo Women" or "Fight Like A Girl Against Endometriosis", for someone else, I'm wearing them for ME. Because in my body hides this disease. It is my life that has changed, it is me that is fighting for a day without pain, a day to be listened to by the medical community and it is me that is looking for support from my fellow Endo Sisters and hoping they can lift me up when I can't seem to find my fighting spirit alone.

A group of women, coming together, working together, lifting each other up, regardless of political, religious, tax bracket differences. They are truly there for each other. Supporting, loving, guiding, answering funny questions with "Oh, wow my body does that too!" and many "TMI" posts with pictures. These ladies have truly joined together to fight this disease, we even have a few Dr's that will freely answer questions posted by members, how awesome is that of him? Dr. Ken Sinervo
has even answered me more than once, and to me, that is amazing. Me, there is that word again. Because as I talk about these amazing women helping each other, I am part of that group. Sending out what we call "Yellow Mail" to each other just to cheer each other up, in hopes it reaches a sister on a day she needs a lil extra love. I am part of that group that helps each other, and I even post TMI posts!

Mother,daughter,sister,friend, and now, this is me, Endometriosis Warrior. I am fighting this disease, it may change my life, but I'm fighting to keep as much the same as possible. Just like cancer, sexual abuse, raising an autistic child while being a bit autistic myself, this will only  make me stronger.

My name is Lynda and I am an Endo Warrior.

My Endo sisters, what a difference you have made in my life. I love each and everyone of you!

FIND A CURE,NO MORE PAIN!

Dear Endo

Dear Endometriosis,

You have been in my body since I was a young girl. You kept me from going to school some days out of the month. Sometimes I could not hide the pain, or the paleness of my skin due to being ill because of you. There were times I had to force myself to play through pain for softball, because I refused to give up and miss a game. Every young girl dreads her period, but me, I didn't just dread the cramps or the icky feeling. I was terrified I was weak because other girls could go to school while on their periods, but I was curled up in bed like a baby crying applying heat and taking pain meds. I was not weak, but stronger than I had ever imagined. I  didn't know you then, I knew what you felt like, I knew what you were doing to me, but I didn't know you were a coward that hid in my body and masked yourself as my period. I didn't know the Dr was wrong when she said it was "just a bad period" and I needed to "start finding a way to deal with the pain."

I didn't know you were the reason I never became pregnant while not on birth control, or you were the reason I could not carry a baby past 14 weeks when I did become pregnant. Lucky for me, I ended up pregnant with a baby girl that told you to kiss her butt she was going to be born into this world, because she was and is a fighter.

You have not won, you know? You may have temporarily halted my ability to physically be the awesome Mom I have always been, or halted my plans to be in a 5k run for Autism, and you may have kept me from a trip to see family in London. BUT, that is all temporary. You didn't stop me, you couldn't stop me from showing my children love, teaching them through hugs and words, you actually helped me make them stronger, more compassionate young souls. You didn't stop me from running, you just put it on hold for now, you didn't stop me from visiting family, it is just put off a little longer. You didn't win.

Today you may have had me close to breaking, but I didn't break did I? Sure, I became frustrated with the constant vomiting, cramps that felt like child labor, headache, pain in my body that feels like someone has zip tied all my organs together and are twisting them for their pleasure. BUT  I didn't break. I am still here, of sound mind, breathing through the pain, nursing my body and letting it rest. Because you may have stopped me from doing the laundry, or stopped me from driving to the store, but you didn't stop me from laughing, from enjoying a day with my children, or from chatting with my Endo sisters. You didn't stop me, and you never will. You can throw everything you have at this girl, and I promise you, I will throw it back at you full force. I will laugh, I will sing, I will smile, and even dance (however uncoordinated it may be) and I will LIVE, because I will FIGHT.

Anything you prevent me from doing is only temporary, because no one, and nothing stops me from doing anything.

I will take back my physical abilities, I will take back my body, and I will never give you my heart to break or my spirit to tarnish. I have you, you don't have me. Remember that, I have an army of support, awesome pain medications, and an unlimited supply of fight. Bring it, I will win, every damn time.

Love,
Girl who has been fighting you for 24 years

To all my endo sisters.. FIGHT and fight this dreaded disease with everything you have. If you run out of spoons I will share any I have!

My Angel

Today Scott and I will head to Coweta to bid our Morgan farewell from this life to the next. Everyone has been sharing their stories about her on FB and it has been so touching to read them all. So here I will share ours.

Around 3 am, the night before one of our OSU games, someone very dear to me passed away. I learned that Lizzy, one of my mother figures had lost her battle with cancer. To say my world was crushed, would be an understatement. I decided to attend the tailgate and game with the crew, I needed a distraction from what had just taken place. I cried at the tailgate, I cried during the first part of the game. I looked down and noticed a young girl, her mother and perhaps a little sister, sitting a few rows down from us. They were all wearing purple shirts with yellow text "Morgan's fight = My fight". I kept looking and it was obvious from the young lady's fight was against cancer. I kept telling Scott I had to go talk to her, something was pushing me to go to her and introduce myself. At half time, I did just that. I explained that I had just lost my mother figure to cancer, that seeing her there just felt like a push to meet her. We talked, her mother Marva was so kind and spoke to me as well. That was it, I was in love with these lady's, their strength their faith, it was like nothing I've known before. they gave me two bracelets, one from Morgan's wrist the other from Marva's wrist. Purple and Yellow with the t shirt slogan on it, and the other black with orange text "Pokes praying for Morgan." That day, Morgan's Fight became my fight as well. We continued to see each other at the games, then added each other on fb, then swapped numbers so we could text. Morgan adored Tracy Moore and it was awesome to cheer with her when he scored a td, we would all scream GO TRACY!

When Morgan was to be crowned for Prom Queen, my family and I made the trip to see her at the football field in Coweta. I was happy to see her mother, and little sister Bailey there as well. Cyan was meeting Morgan for the first time, and she loved her. We got there early as could be, I wanted on the 50 yard line to see her up front. When I found her, she was so excited, and very shocked we came out. She kept thanking me, I told her "Like I'd miss this!" As you can see she posed for a picture with Cyan in her beautiful gown. We enjoyed the game, and the halftime show was amazing. Those kids in Coweta sure put on a show with the band! Then, came time to crown the Queen, and there they placed a beautiful crown on a young lady that was already a Queen of hearts. Cyan made her a sculpture animal out of her hot dog wrapper, yes, hot dog wrapper, and when she gave it to Morgan she was overjoyed!

Each time Morgan was diagnosed with cancer again, after the first meeting, she would make sure to tell me in person so I didn't "have to read it on fb" as she said. I would start to cry and hug her and she would hug me and say "Hey, don't worry, I am not worried, God's got this!" See that was and is Morgan's legacy. that is how she touched so many lives, that is how she became my Angel, an saving grace. Her heart was always open, her soul that of years much older that she. Her smile, through everything, was amazing. Her mother, Marva, I hope I can live up to her legacy as a mother myself.  The love was always beaming from her mother to her. It was so obvious anyone could see how strong it was, and why this young lady was the way she was, has a lot to do with that amazing mother.

Morgan's reach was beyond jus those of us that were blessed to know her in person. Her story reached others through news, through witness and through talking. I remember seeing a woman wearing one of Morgan's shirts in Target. I walked up to her and showed her my bracelets. She as one of Morgan's nurses.

Feb 25, 2013, Morgan was able to touch other lives. Our dear friend Tessa was diagnosed with cancer, one of our OSU crew members. Her and her husband have been in Houston every since, fighting this. I wanted to help them, and I talked to Morgan and she told me a few things to say to help Tessa and Clay in their fight. I told them the story of meeting Morgan at the game. I told them her story, and how she was once again fighting cancer, and she kept her smile, and her faith. They are of a religious background, so this helped them. Clay blogs about Tessa's fight often to keep us all informed. One night, after I shared Morgan's story with them, he was having horrible pains, gallbladder issues, and he was texting Tessa as she was in the hospital and he at the condo. She was very worried about him, and he didn't know what to say to reassure her. Then he said "I thought of the story Lynda sent us about Morgan, a young lady fighting cancer and I simply text back "God's got this."

See Morgan's reach was beyond what even she knew I think! So today, we are celebrating the beautiful life Morgan led, almost 20 years of inspiring, fighting, and making the rest of us love and laugh, not mourning the one day she passed away.

In honor of Morgan, I ask that any of you willing make a donate, however small in Morgan's name to the Oklahoma Make A Wish foundation.

Thank you
and
Morgan girl, I love you, thank you for everything!!!!

Oh, fun in the ER

Time to update again.

I have been completely under the weather the last two weeks. Between a nasty endo flare, and something wrong with my digestive system, I've been doing a lot of sleeping and pain management.

I visited my general Dr for pain in my stomach and upper intestine. He noted it was gas from the x ray and gave me Linzess (ibs medication) and laxatives. A week later I was still bloated enough to be seven months pregnant and having horrible bowel issues. I was becoming dehydrated, weak and losing weight quickly. Then the pain started to be more in my right side. I again saw my GP and he thought it could be my appendix, so off to the ER Friday to find out what the heck was happening.

While there, in the waiting room my endo decided now was a good time to kick in the pain. The staff was very helpful, they got me back as soon as possible and took all my vitals. My bp was high then started dropping. I was given an iv, they did blood work,urine samples and vitals. Then put me in a room and the Pit Dr came to see me. He pushed on my tummy and sides and had a very sad look when he saw endometriosis on my file and kept saying, "I know this hurts when I push but I need to." He ordered full work up on blood, urine and a ct scan.

My blood work was good, my liver, pancreas and kidney function was good as well. But I was severely dehydrated, two weeks of diarrhea will do that to you. So they started IV fluids and we waited for the Ct scan to happen. They gave me three shots of morphine, I won't ask for pain meds, but they were watching my heart rate go up when the pain was getting bad and give me meds. They also gave me Zofran. Then off to the CT Scan. I couldn't remember if I was allergic to iodine or not, so they did the dye and iodine, took the scan, then moved me to my room.

Ten minutes later they gave me a does of benadryl, I was allergic to the iodine after all. I did okay then the itchy started again, they dosed me with Atarax to see if it would help. I started feeling less itchy and my hands stopped swelling. They gave me another shot of morphine for the pain while waiting on results. I was hurting so bad from the endo I was actually shocked. I never go to the ER for the pain, I just treat at home and breathe through it. They gave me three doses of morphine, and two of percocet and STILL I was feeling the endo pain as though I'd taken nothing for pain at all. It did kill the pain in my right side and stomach from whatever was wrong there. But it scared me that morphine took care of kidney stone pain, but did nothing for the endo. YIKES

The results, CT Scan showed my appendix was fine, but my stomach and first part of intestine were extremely inflamed. They found nothing in my blood, no reason, so they do indeed think it is Crone's Disease. They kept me a while longer to be sure I was not allergic to the meds they gave me and watching for a secondary reaction. I was placed on oxygen, given more Atarax, because my oxygen dripped to 82, after that they administered epinephrine. My oxygen came up to 97, my fingers were no longer blue, so they dosed me for pain on the way home and let me leave. But I had to promise to see the GI as quickly as possible.

Now, I will say this, I know we endo girls catch a lot of crap when we go to the ER for pain and to see Dr's. But Saint Francis of Tulsa was amazing. The two nurses, the Dr and the PA all were so kind. They understood my endo pain, were so very kind and the PA kept checking on me and giving me meds and warm blankets to comfort me. I was very grateful to them all and will be sending a thank you basket of goodies to them. It is not every day you meet such kind and caring people in the ER.

So we came home, Scott had the kids overnight, so I just went to bed. Saturday I discovered I am allergic to the ibs meds they sent me home with, Bentyl. I ended up having an extreme reaction, and was unsure if it was the Bentyl or a secondary reaction to the iodine. I didn't take it again, I am to take it three times a day, until this morning when the reaction was gone, and yup I am indeed allergic to the Bentyl. I get to add two new things to my growing list.

So Sunday,I woke up late, slept like a rock once I fell asleep, but was able to at least make my bed. I was given the ok to try soft food, soup, to see if my system can handle it. Well, I will be on jello a while. My system did not handle the soup at all, and now I'm all red and itchy from the meds. Ick. Later that day I ended up back in the ER for allergic reaction to one of the rx's they sent home with me. Epi Pen, Steroids and antihistamines and I'm doing better today!

On a positive note, Ruby the Endo Roo will be here soon! Ruby was made by a wonderful endo sister that is trying to raise awareness for Endometriosis. She takes Ruby everywhere with her and when people ask her, she explains endo to them. So many of us wanted a Ruby of our own that she started taking orders for us to get one. Mine was shipped out Saturday! I can't wait to get her, to help spread the word! She will be going everywhere I go, and I have designed cards with Endometriosis information to give anyone that asked about it. Spreading the word, fighting for awareness, and a better future for the next generation of women.

I hope you are all enjoying your summer, as much as possible. I've not really been out too much this year, but I have made myself a promise to go out and get some sun everyday,even if only for 15 minutes.

All my love,
Lynda

Ruby The Endo Roo

One of these three will be here soon!

Photo published with permisson from

  Ask Me About My Endo

Reflection, Self Awareness, and fearing for the future.

Hello my lovelies, It has been a while, this I know. But as you all know, it takes a lot to actually sit down and type when flares hit. Thank goodness for my mini desk,tablet, and Bluetooth keyboard, else this post may not be made.
What's happening? What's been happening?

Well, as my last post stated I had an ultrasound on the 17th. I am also trying one last ditch effort to keep my ovary by trying new meds. Basically, I am giving my poor Dr a chance to feel he did everything he could before he took it out and changed my life for worse and may not even help with the endo.

Ultrasound
I arrived at the Dr for my ultrasound, and it took a long time. They were having pc issues, so I had to wait. While waiting and talking to a friend and nurse there, a bird flew into the window near us and slid down the window, RIP lil fluffy guy. I told her I though maybe this was a sign I should not do the ultrasound. Finally, they were able to get me in to take a peak at what has been going on. Now before you ask, no endo can not be seen on ultrasounds, scans or even x rays. The only way to see it, is surgery to see with the human eye.
So we began with the traditional ultrasound, on the lower pelvic area, to locate the lonely ovary and to look around a bit. This was difficult, so they went to the not so fun trans vaginal ultrasound. I started to panic at that point. I hate those being done, for whatever reason. I tried to relax as I laid back and let her do her job. Just inserting the wand had me in pain, she put a numbing cream on it and waiting a few minutes and tried again. But the pain was not local, it was internal. I began to breathe through the pain, and she kept telling me how sorry she was, but she wanted to get pictures of everything all over. At one point I began to shake from the pain, she brought in a nurse to help me by holding my hand and helping me breathe through the pain. 30 minutes later they were helping me redress and explaining the first look findings of the ultrasound.

My right ovary, my only ovary, is stuck to the pelvic wall. This explains so much of the pain in that area, and the feeling of my pelvis/hip feeling like it is being ripped from my body when I sit then stand. It also explains the pain that drops me to my knees when I ovulate. She did not find any cysts, thankfully, and upon first look no sign of endometrial cancers or masses.

I was instructed to drive straight home, take pain meds and rest. She informed the Dr that she'd not encountered anyone have that much pain from the ultrasound. Thank you endo for making my life so unique. Later that day when I woke, I could barely walk, lifting my legs was all but impossible. The pain lasted a few days.

Emotionally
I came to a very real, and very solid understanding that I think I've been holding off since this all started. I am not a normal functioning woman. I am not even a fully intact woman. I can not have a child if I wanted to. When I looked at that ultrasound on the screen, it was 3D and nice, but there was nothing there. No parts I had before, what made me a woman is gone, I've gotten so used to seeing those parts in many ultrasounds, that I missed seeing them. They are gone, and they were taken with a promise I would be better. Now I don't have my lady parts, and I am worse off then I was when I had them. They were mine, and they are gone. I am young, and I do not have the necessary parts in my body to create what my body needs to stay healthy.

Another understanding came, and it's not a huge one, but just another thing lost to this damned disease. If that little wand caused so much pain, up to now not being able to have sex has been a mystery, now it is a solid no way in hell. So, endo gets my lady parts, my hormones, my day to day life, my ability to be active in my life and with my children, my job, my sanity at times, and even takes my ability to function as a lover.

These are not easy things to come to terms with. No one could just say, Oh s well it's okay, I'll just live with it. Bullshit, I refuse to just live with this. I refuse to let this grow in my body and consume my lively hood.  I am young, I am a mother, I will regain my health, somehow. I just don't know how yet. Until then, I'll be curled up on the sofa with my blanket, my poli, and holding on to my sanity.

Some Endo Tips

Finding the time, where do I find  time? Though I feel I am doing nothing, I feel I am always busy!

With my children out of school on summer holiday, things get all messed up and schedules are completely off. Summertime brings insomnia to me. I tend to stay awake until three or four a.m. and wake later in the morning. That being said.

This cycle of Endo flare of was designed by a demon, I swear it. The pain, the exhaustion all of it has been mortifying. Pain pills, hot bathes, heating pad (caused another problem I will explain later) and everything I can think to dull the pain so I can at least rest.

My lower back, hips,pelvis,right flank,entire lower abs, and legs have been aching in this battle. At one point I was ready to just remove everything and replace them all with plastic parts. I just couldn't find a 3D printer! I am on week two of Sprintec, taking Percocet,Promethazine, an Zophran if they nausea becomes extremely bad, which it has been horrid.

My frustration is building with things I can't do. I could not lift my bottle of water last night because it was too heavy. So I ended up getting a small glass to put my water in. Every time I moved, pain shot down my side into my pelvis and down my legs. It is times like these that I get upset, and get frustrated. Luckily, I have people who understand, and start to pick me up when I start to get down.

Now, today I wanted to share some information on help with issues having Endometriosis can cause.

Toasted Skin Syndrome, yes it's a real thing, and it was discovered on my lower back. Why? A year and half of using a low setting heating pad. It's a horrible looking rash, that may or may not go away. So I'm no longer using my heating pad, so I am increasing my pain medications. Just another thing Endo has caused. But, I'm not giving up. I am simply taking steps to clear the rash, take good care of myself, and learning what I can and can't do. For any endo sister with the Toasted Skin Syndrome, I will place a link to pics of it here, and I will tell you, the most recommended way to help rid yourself of this is to take away the heat, exfoliate as much as possible, and use Bio Oil, found at Walmart, Walgreens and other stores.


Help with bloating. Many of us get bloated in an instant, even after just a drink of water. Most suggested ways to help with Endo tummy were water pills, cucumber-mint-lemon infused water, and gas pills. Though please do not do these things thinking it will make you seemingly five month pregnant endo tummy flat, wrong, it will just make it a little easier to deal with. I have found some extremely awesome endo tummy day pants! I will post the link here, they are actually scrubs, but a very giving material, and awesome drawstring only waist. Then I ordered tunic tops to help as well. Yoga pants a few sizes too big also help, and I have a collection of shirts that are two to three sizes too big as well. For summer, I purchased a pair of maternity shorts and a pair of maternity Capri pants for those days, and pair them with a long tunic top Avoid too much caffeine on those days, and try not to wear tight clothing. It will only hurt more. Also, bending is a major issue on those days. I have found if I bend at the knees , not my waist on those days it helps. Get up and move around, difficult I know, but it actually will help a bit.

On days when getting up and down are difficult, I have solved this issue by having a tote near me. I have a tote that I carry from my room in the morning, to my sofa or where ever I am going to be. Containing, my tablet,charger for phone,small bags of meds I may need,lotion,socks,pen, notebook, my kindle,chap stick, hair ties, and anything else I may need during the day. So I have it in one place, and I don't have to get up and down on the harsh days of moving. Then at night, I take it to my room and can use what I need from my bed as well. I also have a wooden lap desk big enough for my tablet/laptop with a drawer for things I might need, so I can work from the sofa when the PAC chair is not comfortable

Helpful links as mentioned above

Comfy scrubs

Toasted Skin Syndrome Information

Bio Oil

Mint, Lemon, Cucumber Water Recipe

For more help with Endo issues Endo Hope

Return of the Ugly Truth about Endo

The demon has returned, and it is back with a vengeance. I started Sprintec Thursday night, and I felt great Friday,Saturday and Sunday. I even went out all day and evening Saturday and was fine Sunday. I had forgotten what that felt like!

But today, as I stepped out of the shower, the familiar ripping, tearing feeling shot through my pelvis, as though my leg fell off. As I dried myself noticed my back was sore, my kidneys were tender, my pelvis hurt, and I had spasms and cramps starting. Then, ten minutes later as I was in my room, the pain hit on the right side shooting across to my lower abs and to the floor I went with a wave of nausea and pain searing through my body. Hello endo flare with my cycle, how I have missed you. NOT! Now, I'm on the sofa, feeling like my insides are being twisted, pulled, and pushed out of me. The pressure is like that of back labor and later months of pregnancy. My body hates me today.


So, today, my entire body is affected, from exhaustion, pain and nausea. But, I had three days of no pain, three days of no worry, three amazing days. So here is to hoping that after this cycle the sprintec will hold my next cycle back and maybe, I will get a week or two weeks of no pain.


Until then, my fav Winnie the Pooh blanket,hot water bottle for tummy, heating bad for lower back, pills for nausea, coffee for my headache, and encouragement from my support team. One of which is the most unlikely, in my thoughts, but he is doing a great job making me laugh and find humor in the situation. :D

The laugh is on endo, because I had three days of pain free fun, and I used them wisely, and will hold fast to the warm memories and laughter of those three days of no pain, no bloating so I cold wear regular clothes, and enjoying a movie with my family pain free, and some sun with my family pain free, and had a wonderful time!


Hang in there my endo sisters and fellow spoonies. For though hell has come knocking on the door again, I will enjoy the sweet taste of pain free three days, that held awesome memories.


Sincerely,

Gloves up,keep fighting, Endo Girl

Downside of Flare Up or...

Okay, so for two nights and three days I've not taken any medication for pain. Nor have I used my heat pad for comfort. I still have aches and pains but they are minor and I can live with that. I am not sure if the treatment is actually working, or if my flare up is just down for now. Time will tell as soon as the cycle begins again.


At night I take a hot bath with Epson Salt, soak for half an hour, then I go to my room and watch a movie in bed. Usually as I recline, I feel tugging and pulling sensation in my pelvic area, if I lay on my left side my left hip and thign start to burn and ache. Well last night, neither of those things took place!


The trade off.


Anytime we mess with our hormones there is a ying and yang effect. A good with a the bad. Mine was, like many who have taken this medication, increased anxiety. I have anxiety disorder anyway, but this was down right scary. It started with this overwhelming feeling of doom, a wave of sadness that hit so hard I felt it physically. Then my body started it's panic mode, tensing up between my shoulders then releasing and feeling on alert through out my entire body. I felt I couldn't breathe, and I could not calm down. Milad tried his best, and ususally he can help me remain calm, but it was out of control this time. :( Finally, at three in the morning, I took THREE klonopin and a promethazine and by five I had fallen asleep, only to suffer from the anxiety in panic attack form in my sleep. I woke several times gasping for air and terrified to even reach for my phone to check the time.


I talked to my Dr this morning and he assures me this would settle in a week or so. So will the trade off be worth the possible remission of Endometriosis for a while? I'm not sure. So far, anxiety, insomnia, nausea.headache by evening time, and loss of appetite. For now, I'm hopeful these will subside or at least lessen enough for the trade off to be worth it.


I felt very little pain this morning, so I spent an hour dancing in the kitchen and dining room with Cyan as we sang along to our favorite songs. Love that girl, and talk about medicine for the soul. :D I was even able to get my lil guy to do the two step and Texas three step with me for a bit!


Here is to a good day, for a spoonie! I am sitting on the sofa, typing on my blog, enjoying my coffee and I'm in regular clothes, not my too big scrubs! Woohoo! Lynda one, itchy itchy moses (endometriosis) zero today.

It's been a while...

It has been a bit since my last post. Things have been a bit topsy turvy around here. Several days from a flare up worse than I've had before, landed me in bed in pain with heating pad and clinging to my stuffed Poli for relief. I was to see my Dr May 27th to set a date for having my remaining ovary removed and any adhesions and endo he could get out as well.

When I arrived at the appointment things were very different. He had not been sent all my records from the hospital or my previous Dr, of my surgery. I can't give details right now, but just to say he finally obtained them, and in them the pathology of my hysterectomy. He came back in the room and had me sit down and asked me if it had been discussed after my surgery what was found in pathology. No, I was completely unaware. I was just told they found endometriosis on my uterus, ovary, bladder and from the right kidney. Pathology showed I had adenomyosis  as well. It was found on the back wall of my uterus.

So without giving more than I should at this point. He is very uncomfortable with taking my remaining ovary out, due to my age. He says I am too young to deal with menopause and if at all possible, he wishes to save the ovary. Though, at anytime it is my choice and I can say enough,and it will be removed. I decided to give him the month of June and part of July to see if the new hormone treatment does anything for pain relief. I also will under go a ultrasound and MRI June 17th. If that shows the ovary to be bad, example cysts and such, then the ovary will be removed.

I feel I can trust this Dr much more than my last, and he is also having trouble making sense of things. But together we will get this figured out. So for now, pain pills as needed, heating pad, and bc for hormone control. Then I return for the scans June 17th, and if the ovary is okay we will continue the treatement, if not we stop and go into surgery, otherwise I wait until July to make any decisions on what to do. So here is to luck with the new treatment, which if it is going to work, will work within the month. Dr is doing everything he can.

I truly wish I knew now what I didn't know then. I was trusting the medical community to help me in the right decisions. Surgery didn't CURE me, so they pushed me out the door and told me to find a new Dr. Well, I did just that, and he is doing his best, spending over two hours helping me decide to remove the ovary or try a new medication before doing so.

Feeling slightly more confident than before, though still feel as though I'm the host of a demon alien that refuses to let go of my body and return to it's rightful home.

I understand my Endo sisters very well now. Better than I have before, and I understand myself much better than I did before. I am one strong woman, I don't give up, I don't give in, and this has tested me to the end of my rope. When I reached the end of my rope, there were those words, "You can do this, you are not alone, and we will sort it together, just hang in there."

How important is support at this point? VERY important. If you have someone in your life that is dealing with an illness that keeps them in pain, offer a kind word. You might be amazed to know how lonely this feels, how difficult it can be to put one foot in front of the other when it hurts so much. Text messages through out the day and night, phone calls to check on me, emails and IM's, they keep me going when I feel I can't.

This is a confusing world, one I am not used to. Yes,  I have always had pain, I've had two weeks each month that I would lay in bed or on the sofa and breathe through the cramps and pain and the feeling of my insides being ripped apart. But, this is different. It is not just two weeks out of the month. Since Feb of 2013, it has been EVERY DAY and EVERY NIGHT of pain. I pushed through, I continued to do all the things I did, I just took pain meds to help. I had amazing results after my hysterectomy. I felt like I had a new life, a second chance. NO PAIN! It was short lived, only two and a half months. Then the ripping, burning, tearing pain came back. Only worse this time, more intense, and constant, no relief even on the strongest medication.

I don't know how this happened, how I went from being a girl that everyone would tell to sit for a minute, to this girl that sits and tries to do at least one load of laundry and make her bed for the day. I refuse to accept this is my life now, I refuse to think this is just how it will be from now on. Because I am not capable of giving up. I can't let myself give up, and say, "Okay this is life now."  I have an end to my strength, my rope is not infinite, but my supporters keep me going when I can't. They offer a hand to pull me back up, a kind word to encourage me, and the best part, I don't have to ask them. They just do everything I need to help me out. The endo sisters, spoonies, those on G+ those in my life here that keep saying... "You can do this, we believe in you." "Tomorrow is a new day." and most importantly, they know when I don't want to hear those words, and I just need to lay on the bed, with my heat pad, my hot water bottle, and my Poli and just cry, and feel someone is there to wipe away the tears.

To those people, thank you for everything. For seeing me through all this, for the awesome support and for loving me enough to hang around.

Sincerely,
A fighting Spoonie

A friend posted this on G+

a few days ago and I loved it!

Walking the path

I've held off writing for a few days. My Dr's appointment Thursday confirmed some worries. There seems to be a lot of "missing" information in my medical records regarding my hysterectomy and one ovary removal in September. My new Dr is starting to understand why I interviewed him before allowing him to examine me or make any decisions on my health. He was very different this time. Last time he didn't have my medical records yet, so he just had a woman in his office stating she had endometriosis and wanted help because it was too painful.

He was very kind, very helpful and he was very informative about what we could do, but ultimately left it up to me. He read my pain journal, I showed him how little of the pain meds I had actually used, I wanted him to see I do everything I can before resorting to that. He listened to everything I had to say, and he replied with compassion. Not just in his words but in his voice I could hear the empathy he felt. I was much more comfortable.

He followed as I explained it feels like my entire pelvis is being wired together and can't move correctly. That I can be semi okay, then walk down the hallway and my hip give out and I can't move. I told him about laying in bed with cramping in my lower pelvic area with extreame pain in my vagina and bottom. I actually started crying as I opened myself up and told him in detail exactly how it felt, something I don't do. It just seemed to make it so real, telling him, saying it outloud. I am so confused how I went from being so damned active to being unable to take a trip to the store without pain hitting.

He agrees, taking the ovary out would likely be a tremendous help, for the time being at least. But first, he wanted to get the records from the hospital where my surgery was done, so he can see exactly what was done, and plan his route of removing the ovary, and all the endo, and adhesions he can without causing too much scar tissue. Then he wants to monitor my condition, menopause after the surgery and give at little HRT as possible to give the endo no reason to spread or grow or be active. He also asked many questions and came to the same conclusion my GP had come to. Either Crohn's Disease or Ulcerative Colitis. So, surgery first, then off to the GI to diagnose which is causing my other issues.

While walking me out, he put his arm around me and said "You are a strong woman, and this will be a fight, but we will fight it together." I dried the tears and walked out to the waiting room where Cyan and Thomas waited.

Since the Lupron is wearing off, I'm feeling a lot of the endo pain. Everyday, and I am about to remove the ovary myself, yeah I know, not smart. But still, the idea is there.

I return to the Dr the 27th, then he will schedule my surgery, and we move from there. I'm a lil worried. I just had major surgery in September, not enough time to forget the awful pain after waking up. But we are warriors, we endo sisters. And I will be okay, and I will walk that long recovery road and add the purple to my yellow for CD or UC. Forward I go, down the path of hope, and a bit of fear. But mostly, I'm ready for this walk, I'm ready for this surgery and I'm ready to be pain free, even if it does not last forever. A break would be fine with me.

I won't pretend the idea of all this is easy, I won't even pretend I didn't feel a little defeated when he told me I needed a diagnosis of CD or UC. Another chronic pain disease. But, I pulled myself together and reminded myself, it's still life and I'm not fighting for the right to breathe. Just some pain relief.

I will keep this updated as I can. I just needed some time to wrap my mind around what is going to happen and getting prepared for it all.

Betrayed by my body

Yesterday was a beautiful day. My autistic daughter was given an awarded in Reading,something Dr's told me she would never be able to do. I can hardly express, in words, how proud I am of my girl and all her hard work. As we sat, waiting for her name to be called and clapping for all the kids we knew being awarded as well, something struck me so hard, so deep I had to force it to the back of my mind, so that it didn't ruin this monumental moment for my girl.

When we came home, I went to my room to compose myself, before joining her in the family room where she typed more of her book onto her laptop. I had to sit very carefully, I couldn't move very easily, and I was trying to conceal this from her. I didn't want her to see how much sitting on the bleachers had hurt. I didn't want to dampen that smile on her face as she text her best friend Zack, who won four awards. That is when everything hit me. Hard.

I sat for two hours on hard surface benches. I was hurting while there, but I felt it would be okay once I stood and walked it off. I stood, I walked, but I could hardly life my legs. My pelvis, hips and back were so sore I could not breathe without feeling pain near my kidneys.

I came to a very real understanding yesterday. This is not going away. This is not going to magically get better. I was not going to wake up one day and this be in the past. Not anytime soon, anyway. Am I complaining, no. I simply came to an understanding yesterday.

Endometriosis has changed my life, has changed me, has changed the way I do things. I've gone from being a woman who pushes through the pain to get things completed. Who won't give up and keeps walking with the family at the fair, even though my body burns in pain. A Mom who does everything for her two children, cooking, cleaning, laundry, dishes, working outside and inside the home... to Me today. I can't do all those things. I can't clean my house top to bottom and still take the kids to the park and play after school. I can't spend a full day in the lab and come home and go to the ball park and hit a few balls with the kids, or walk the trails with them. I have to do one or the other.

I've had this since I was 14, but it gets worse as time passes. Unfortunately the hysterectomy in September gave me freedom and pain free life for two months, that came at a cost. The Endo came back with a vengeance after two months. I've experienced much worse pain and complications after my hysterectomy, then I did before! Lower back pain, hip pain, pelvic pain, pain with bm's that makes me nearly pass out. Bending is a no no, reaching above my head is a no no. So many things my body refuses to allow me to do.

The realization, I can't do what I could. I have to ask for help, when I was the one always helping. I can't take care of the house alone. So many I can not's, angers me to no end. I'm furious this has taken place. I am furious that I am learning just how much this has effected my life in the last five months. The pain is more, the limitations are more, and I'm so stubborn I just keep pushing, telling myself I can do it.

Yesterday, I was in tears of pain sitting at the awards ceremony, but I refused to move. The familiar pulling, tugging sensation returned. This is the first event I've attended since my pain returned in Feb. SO this was a very real eye opener for me.

This morning things are in a different prospective. How much endo has taken, how much it hurts, how much I am no longer fiercely independent. I took a shower this morning, and my daughter had to assist me in drying my lower legs, handing me a towel then handing me my robe. I dressed but skipped my socks, which I need because I get so very cold, but it would hurt to try. She came in took socks out, said Mom you need your socks, you will be cold. And she put my socks on for me. She took my bag to the family room, my tablet, phone, books, writing tablet, lip balm,lotion, meds, everything I may need for the day including my heating pad in it. She made sure my lunch was on the top shelf so I could reach with out bending, and put my water bottle on my little table. My daughter took care of me today, because I could not take care of her. She even asked a friend for a ride to school.

Wake up for me. I can't do it all, anymore. I can't help everyone in my family. Now I need them to help me. How can this be? I've always been active, so active they tell me "SIT! before you drive me crazy." How did I get here, why am I sitting on this sofa with this heating pad and hoping I don't have to take narcotics to get through my day. A word that until August had zero meaning, Endometriosis. A surgery that showed me just how much of my daily pain was not normal, was not because I was always on the go, but was Endometriosis. That word. Endometriosis. That is the name of the enemy. Endometriosis. I have endometriosis. I no longer control my life's schedule, and daily do's. Endometriosis does. How did this happen, how can it be a very active person is all of a sudden, still... not moving.

I am limited, I need help with things, I am limited I need help with things...... FOR NOW. I will find a way around this. I will find a way to move, to not be still.

I WILL FIND A WAY.

I have endometriosis, I am a spoonie, but this is NOT my life.

I will be better, I will fight this for me, for them..
My babies.

Pain pain go away, come again, NEVER

How was your weekend? Mine was a mixture of great and not so great. Friday evening I took it easy, did some house work, and some laundry. But I was saving my spoons for Saturday. My son attended a birthday party at a friend's, and later we all gathered outside for some laughter and drinks with friends. I was okay sitting outside in the lounge chair, and okay when I went to bed.

The pain actually hit last night. Right above hip, on the left side of my back, radiating to my pelvis and then pubic bone. It has felt this way before, like a marble in my side. But last night the slighest touch hurt and I was unable to sleep until late in the night. It is better this morning, but still there and still painful. I've added it to my things to discuss with the Dr.this Friday. At this point, Friday won't come soon enough. My legs, back, pelvis, and kidney's are painful this week. Ovulation pain dropped me to my knees, early in the week.

I went for my first treatement at the "Secret" place, no I'm not telling anyone yet what it is, and it was very pleasant. I really liked the staff and the procedure was cool. Now I am waiting the results, and very hopeful they will emerge,soon. Part of the "do a lil something for me", approach I am taking to life these days. Spending at least one or two hours doing soemthing for me. It is rather nice! I am hoping for my book to come tomorrow so I can begin to read, Illness by Havi Carel. I also ordered TD Jakes new book Instincts. Though I am not religious, I like his wisdom. I've seen him on Dr Phil a few times and he really seems to have the old world knowledge about him. I look forward to reading the book and taking away from it anything that helps keep life positive.

I've a very busy week planned, well busy for a spoonie, I guess. My 13 yr old daughter will be getting an awared at school Wednesday. I am unsure what yet, we won't know until she walks across the stage. I am so proud of her, taking AP courses, holding down A's and all this with her autism. I have my Dr appointment Friday to setup lap surgery and I think ultrasound and a few x-rays. After I am taking Cyan to get her hair fixed for the dance later that night at school. It is beach themed, Surfs Up, so we are adding some highlights at the salon, then I will do her hair in beach waves before the dance. FUN!

Wish me luck.. I am going to be needing all my spoons this week!

More updating,making a home..

Okay, so today I have added more poetry, photography page, and filled out the Autism page.

Now, I've sat at the PC too long and my body is screaming at me to stop. So this will be all the pc updates I do for the day on the blog, though I will continue on my table when I am able.

Endo Update:
I have a Dr appointment Friday, where we will discuss a number of things. If the Lupron seems to be working, if my pain levels are changing or I notice a difference. Also, unfortunately, I will be discussing the possibility, a very strong one of IBD or Crohn's Disease. Almost passing out from the pain of a BM is not my idea of fun, and I'm rather sick of being sick. So Friday, I attend my Dr appointment, then set up more appointments for testing and such. Then off to get my daughter's hair highlighted for a "surfer" look for the dance later that day. Please, let me have enough spoons to get everything done for her that I need to. Of course, this is my child, I won't stop until I drop.

That is all I have for now, I will be adding more content each day. If you want, look on the right side and you can follow this with your G plus id. I am thinking of turning off the "Publish to G Plus" feature, so if you want to know when I post, that is the best way. Thank you all for coming to visit my blog! Only open a few days and my G Plus family has hit it like crazy. Thank you for the support, and know that I love you all dearly!

Getting Settled In...

Okay, I've been tweaking a few things, trying to get things the way I want them here. It is a slow process, but it will eventually look like home around here.

Yesterday was a horrible day, as far as endo issues go. Just before taking my daughter, Cyan, to school pain hit in my right side. So intense I doubled over in pain and immediately started vomiting. That put every on hold for the day. Nine in the morning and I was already taking pain meds, which I resort to the VERY LAST on my list of dealing with endo. I spent the day, reading, relaxing on the sofa, and with my hot water bottle as my best friend.

I have a Dr. check up May 16, to see how I am doing on Lupron Depot and set up to receive my second (three month) shot, for the six month treatment. I'm hoping it works, though after the pain yesterday I have all but resolved to just removing the ovary that remains. I hate the "wait and see" between appointments and having to get all these different things completed before I get answers. But then, do we actually ever get solid answers? Not really, just their best guess at something they don't even understand themselves.

I've decided I am going to make a "memory board" of sorts, to place my favorite uplifting quotes and sayings on. Yesterday, one of my endo sisters said something that made me think about doing this. She talked about how Endo is not my life, just a part of it, and to make the most of the pain free days. So I will get started on that this weekend I am hoping, and will of course share as soon as it's complete.

The last 9 months I've been looking for the perfect bracelet to wear, for awareness, but also with encouragement when I need it most. I finally found one from Bravelets. I ordered and should have it early next week. Be Brave. Words we all have to live by.

Found here 

So, here I am, looking for ways to spend my summer, creative ways that is. I am undergoing other treatment that requires my not being out in the sun unprotected, so I am going to tap into my creative side this summer. I have started a mini desert garden, inspired by Poli's picture of one his neighbors created. I also plan to do a mini rain forest garden. The memory board, and create a few things with spoons. Filling my time to be able to not be disappointed if I can't go out and do things. 

Here is to hope that the Lupron works... Here's to a good summer, and here is a HUGE THANK YOU to the endo sisters on Twitter, and now here on blogger, that keep me going, answer my questions, and laugh with me over hot waves aka hot flashes! 

Have a wonderful day!  

Hello :)

Hello, and welcome to my new blog. I'd like to thank Mary for encouraging me to pick blogging back up, and sharing my story. I also like to thank Poli for always telling me to TALK and share what I feel and what is happening.


To start, I am somewhat new to the Endo world. Though it has been determined I've had endo since I was about 14 years old, I was only given a diagnosis August of 2013. I  had a hysterectomy September of 2013, leaving only one ovary. I was told I was "cured" by the Dr that did the surgery. Later, after two months, the pain returned, that is when I started talking, researching, learning, that endo does not have a cure.  She started me on Lupron Depot Feb 24,2014, when I called to ask if extreme pain was normal  two weeks after the shot, I was told no, it works right away, take advil. I felt turned away, after my endo sisers on twitter told me it takes time for the Lupron to work and it actually makes things worse before they get better. So I started to understand the frustration that come with this diagnosis. Dr's that give up on you, people not understanding, and pain that you wish you could just turn if off and be "normal" the way they want you to.


You learn who your friends are, who is not going to stick around. It puts a huge strain on your relationships, your work life, your ability to do, well anything really. Plans are made, and plans are often broken.


I met wonder women on twitter, endo sisters that have answered all my questions better than any Dr could or would. Support and love, and most of all, a feeling of belonging! I belong to a group called Spoonies, I love the spoon theory and have adapted it into my life. I spend my spoons wisely.


Please stick around, as I embark on getting this in order and adding more content.


Have a beauitful Tuesday!