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!