The One-Two Punch....

I have had stage 4 Endometriosis since my early teens, which was deemed inoperable, and was just recently diagnosed with fibromyalgia.

I currently take Depot Lupron for the Endometriosis, it suppresses the estrogen production to keep the growths fromai cycling and spreading. For both Fibrimyalgia and Endometriosis pain I take Lyrica, Norco and Ambien.

Fibromyalgia and Endometriosis are very different, yet have many commonalities. Many endometriosis sufferers have TMJ, asthma, chemical sensitivity, migraines, depression, ibs and the list goes on.

Fibromyalgia is a triggerd/overactive brain response/signal, while Endometriosis is endometrial tissue found growth/chocolate cysts inside and/or outside of the reproductive system.

Stagesh are determined by the amount if internal organ involvement. It attached itself to ANY organic surface in the pelvis region such as liver, bladder, bowel, kidney, and yes, the sheath of the spine.

There the tissue begins to grow, but out also responds cyclically during a womans cycle engorging within blood, sloughing off, and reattaching to yet another surface or organ, then these growths attach to each other and can web/fuse the organs together or to the pelvic wall. They also begin causing scarring and adhesions that can make moving the wrong way feel like you are tearing your insides.

Fibromyalgia can add a whole new level of hell on top of it. Neither one is curable, all you can do is attempt to manage the pain and stop the spread of the growths before they can seriously interfere with the function of your internal organs. It can fuse your bowl to your pelvic wall and other organs and the adhesions can seriously interfere with bowel function. It had also been found to tear and growths can get inside the bowel as well. It can grow and cause adhesions on your liberty, kidneys, bladder, stomach and even attach to the outside of lungs, all restricting function and causing pain.

Before fibromyalgia I was able to go to a chiropractor to regularly realign my spine because the adhesions are pulling it out, the ems result being my right leg almost am inch shorter than my left before an adjustment. After fibrimyalgia, I can no longer use chiropractic, a simple adjustment can trigger an unbearable painful episode.

I too have had for shoulder and thee knee surgeries and more nerve blocks in my back, shoulders and neck than I can count. I am on self injections for migraine, have nebulizer for asthma.

It was so many years before mine was detected that there was nothing to be done and surgery was waaay to risky. They cauterized what they could safely, patted me on the head and said have a nice life....but it doesnt work that way. I ended up on the Depot Lupron nearly 15 years ago after continuously showing up in the emergency room for at least once a month.

Depot lupron suppresses the return production in order to stop the cycle and retard the growth ol of the adhesions. I am one of the lucky ones who can take it, so only one week out of the month is hell due to endo, the rest I can thank Fibromyalgia for. Especially the "glass" hips, where I feel like I have ground glass in my hips and lower back making it nearly impossible to walk.

Fibromyalgia had caused pain and aching in my joints, my worst areas are my neck, shoulders and arms to the elbows, back to the middle of my shoulders..... Then my lower back, hips, pelvis (and the endo participates as well) and down both legs to my knees.

But I still have a job, a man who is absolutely wonderful and even though my life went from 100mph. to nearly zero... I am happy and learning to live with, and work around my pain and physical limitations.

Published with Blogger-droid v1.6.7

Open Letter to Normals....

"There are the things I would like you to understand before you judge me...

Please know that being sick doesn't mean I'm not human.

I may spend most of my day flat on my back and I might not seem like great company, but I'm still me stuck inside this body.

I worry about school, work, family and friends and I'd still like to hear about yours.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable but it will pass. I've been sick for for so long that I can't afford to be miserable all the time, in fact I work hard at not being miserable. So if I sound happy, it means that I'm happy, it does not mean that I am well.
I may be in pain and sicker than ever.

Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for five minutes, doesn't mean that I can stand ten minutes, or an hour. It's likely that five minutes has exhausted my resources and I'll need to recover -imagine an athlete after a race. They couldn't repeat that feat right away either.

With a lot of diseases you're either paralyzed or you can move, but with Fibromyalgia it gets more confusing.

Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything.

That's what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, and the next I'll struggle to reach the kitchen.

Please don't attack me when I'm ill by saying, "But you did it before!". If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me worse.

Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were no longer able to participate in life?) but it is not caused by depression.

Telling me that I need exercise is not appreciated or correct -if I could do it, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now -it can't be put off or forgotten just because I'm doing something.

Fibromyalgia does not forgive. Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.

If you want to suggest a cure, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because every one of my friends has already suggested every theory known to man. I tried them all, but quickly realized I was using up so much energy trying new treatments I was making myself sicker, not better.

If there was something that cured Fibromyalgia, all of us would know about it by now. If you read this and still want to suggest a cure, submit it in writing but don't expect me to rush out and try it. If it is something new, with merit, I'll discuss it with my doctor.

Please understand that getting better can be a slow process. Fibromyalgia entails numerous symptoms and it can take a long time to sort them all out. I depend on you -people who are not sick for many things but most importantly, I need you to understand me."

I do not know who authored this letter, but if you know pleaser let me know so I can be sure give them the credit the deserve for writing this.


The above text may be printed freely, and shared as needed providing all content is kept intact. No other person shall ever publish this work citing themselves as the author

Published with Blogger-droid v1.6.7

Endometriosis, Adhesions-Related Disorder or CAPPS? -The problem from the patient's perspective.

http://www.endometriosiszone.org/display.asp?page=/International-Adhesions-Society-Wiseman/CAPs

Published with Blogger-droid v1.6.7

New Kid on the Block...

So now that I have learned how to live my life around endometriosis, and a few other inconveniences, along comes this new player: Fibromyalgia.

I had always loved horses...I'm sure equine DNA flows through my veins.  The graceful beauty of their fluid movements and their huge gentle eyes that look right into your soul. I had ridden, shown, trained and horses since I was young and loved every aspect of it.

I loved to hop on my horse and take long rides in the beautiful rolling hills of Southern California, enjoying the beauty that others seldom ever saw.

Of course there were the falls and barrel racing accidents that come with being a daredevil on horseback.  Before I had completed high school I had been inconvenienced by extensive surgery on both knees.  One to re-attach a kneecap wiped off by a barrel, the other to splice back tendons, ligaments and remove bone fragments from a fall.  Back in the mids 1970's  arthroscopic surgery was not available so it was old school and took a long time to recuperate...which to me required too much time out of the saddle!

Through the course of growing up and starting a family, horses took a back seat, but were always in my heart and I knew one day, I would be back in the saddle.

That day finally came.  My son was nearing graduation from high school,  I was already heavily involved with a local non-profit as a board member, volunteer, and once the weight was lost, I was going to be certified as a therapeutic riding instructor for the disabled.  When I was introduced to this beautiful filly and it was love at first sight.

She was right out of the pasture as a three year old and needed a good start, and I needed to lose 80+ pounds., it was a match made in heaven.  So I sent her off to the trainers, and I went to work on losing the weight.  During that time I ended up having yet another knee surgery...but they didn't slow me down.

Fast forward to the spring of 2008.  I had lost the weight, (though I still wanted to lose more) was working full time at my day job, teaching riding lessons all day Saturdays, and feeding 25 horses almost daily by loading and throwing hay and fifty pound bags of feed from my pickup truck by myself.  The lessons entailed readying the horses, lifting students on and off the horses, walking with them the entire time in the arena for each hour our half-hour lesson, on my feet walking for about 12 hours a day, etc.  I was also working my horse and riding any chance I got including monthly horse shows, even achieving top ten two years in a row.

In steps my new friend Fibromyalgia. 

I was having searing pain in my neck and shoulders and in random other parts of my body.  It was April 2008 and I was doing laps in the local American Cancer Society Relay for Life.  I had been walking all day and suddenly the pain was unbearable and I had to stop and take a break.  I sat down in the chair and covered myself with a blanket, it was freezing and I was shivering.

After resting for awhile, I put my hands on the arms of the chair to push myself up, and I couldn't near any weight on my arms author seating pain, and the weakness and the pain was so bad I had to leave.  During the next two days, I lost complete use of my left arm, and the pain persisted in both. I also noticed an increasing, unexplained pain throughout my body.  I was still working and teaching, but had someone else do all the lifting and my son was feeding the horses.

While awaiting a doctors appointment, during a lesson, I accidentally grabbed the lead of my lesson horse with my left hand while assisting my student, the horse tossed his head, and tore my rotator clear through.

I had a surgery to repair the tear, but that was just the beginning.  A total of three surgeries, hours and hours of painful physical therapy in the next two years and limited use of me arm and excruciating pain all over my body became a new constant.

After seeing multiple specialists, having nerve blocks in my shoulder and c-spine to no avail, being told that it was all in my head, that I had neurological damage, etc., my primary care physician diagnosed me with fibromyalgia in August of 2010.

I have not been able to ride our work my horse since the first surgery on my shoulder and little by little over the last three years I have had to give up almost everything I love to do including riding my horse, teaching and volunteering with the disabled, and had to resign from being on the board of directors of three non-profits I love dearly (but thankfully that does not include my job).  I had to send my horse to pasture, which was so painful, knowing I might never ride again.


So this was the beginning of a new chapter in my new life.

I'm not a liar, and it's not all in my head!

Awareness efforts for Endometriosis are long overdue.... 

I for one have been fighting a lifelong battle with endo.  As I sit here telling my story, I have the nagging low grade pain and reminder that it is only a matter of days until I will again have my Depot Lupron shot and keep the norco at hand.  I realize that this drug is rather controversial and not an option for many people, but I am one of those rare few who have been able to take it and it has literally made the difference between being able to live a semi-normal life, or not.

My battle with endometriosis began in my early teens (1975) when the pain would get so bad and would be  accompanied by symptoms of IBS, debilitating blackout migraines, TMJ and all over swelling and pain to the touch (I have also been diagnosed with Fibromyalgia within the past few months) ... my entire system would literally go haywire.. I would have such horrible pain in my neck, shoulders, pelvis, lower right back and hip that would shoot down my right leg  to my ankle making painful to walk at times, limiting my range of motion and causing difficult standing up straight.  I even remember one time in my early twenties I had “monthly” pain and swelling in my right ankle to the point they casted it thinking I was suffering from gout.

I would miss on the average one day of high school a month from the pain and symptoms.  Doctors were cold and callous when I was a teenager and would tell me I have heavy periods or a low pain threshold, quit whining, take a Midol and deal with it so I suffered in silence for many years, not knowing what it was or why my periods were so heavy and so much more painful and involved than my classmates.  This has extended throughout my professional career as well…  how do you explain to your boss when you don’t even know why yourself?  When you don't have a diagnosis there is nothing you can tell them as to why you are missing work, your doctor won't give you a note so you have to hope you don't lose your job due to unexplained absences due to an invisible, possible "made up" malady.

The pain continued to escalate and over time the pain was only tolerable for about one week out of any given month…  the migraines increased as did the level of pain.  I was never treated for any of my symptoms or pain.  I began to think that this was going to be my life and I needed to try to overcome it and just get used to it if I was going to be able to have any kind of life at all.  

  After a couple of miscarriages, when I was 27 I became pregnant with my one and only child…  that pregnancy brought such relief from the pain of endo I wished I could have stayed pregnant forever.   I had never remembered feeling so free of pain.  It was strange, the entire time I was pregnant I never feared the pain of childbirth, in my opinion it had to be less than my continued pain with endo... and yeah,  childbirth was a breeze!

I felt great for a few months after delivering my son, and then the pain gradually returned with a vengeance - the pain was even more severe than before, was continuing to increase every month and I had to deal with it.  Not knowing that the chances of me having another child were slim to none, I decided at age 33 to get my tubes tied.  It was while undergoing the laparoscopic procedure that I was diagnosed with Endometrisis.

The surgeon came in after my surgery, he was very grim and proceeded to show me a photograph he had taken of my insides with the camera showing numerous circles on it - he told me I had Endometriosis and that those circled areas were areas he was safely able to safetly cauterize the growths.  HUH?  What the heck was that?  He told me I needed to follow up with my regular doctor.

He shook his head and told me that the disease had so invaded the surrounding organs and that it had been allowed to continue for so many years that it was too involved and that there was nothing further that could be done, he said he was sorry, patted me on the head and that was the end of it.  

Being fresh out of surgery and still under the effects of anesthesia I was foggy and confused, was unable to adequately able to comprehend or process what I was being told and I had no idea what the diagnosis meant or where to go from there.  That procedure brought the pain to a semi-tolerable level for a couple of years, although it did nothing for the IBS, and pain and tenderness to the touch through my entire body.

Gradually, the pain returned and continued to increase, but I sucked it up and life went back to how it was until about 10 years ago, I was 35 and the pain had become so intolerable I would end up in the emergency room where I would be given narcotics and sent home, there is nothing wrong with you, deal with it.  Those monthly E.R. visits would continue for another two years and continued to escalate.  I had Kaiser, and the nearest hospital was 45 minutes away. 

My last visit to the E.R. was the most horrific ever. I was now 37 and the pain was worse than ever and I was bleeding so bad, I thought I was going to bleed to death... and I didn't just bleed, I literally "delivered" clots, some at times nearly the size of my fist.   I drove myself to the Urgent Care, standing in line to be waiting on crying uncontrollably from the pain. 

I was placed in a separate room and given a pelvic exam, once again and the doctor announced there was nothing wrong with me, the pain was in my head and that I was just trying to get a script for pain medication.  I was horrified and crying the entire time and telling him it was real, and literally begging him to help me get some relief.  Are you kidding me?  I had  NEVER been given a prescription of any kind for pain, only shots of demoral in the E.R. amidst accusations that I was faking it to get drugs.

He said wait a moment, and he and the nurse left the room they were gone for over an hour …  I was laying on the bed in full repose, feet in stirrups the entire time. I was crying out from the pain and calling for someone, anyone to help but nobody answered me, nobody came.

I finally got up, bleeding all over the floor, still crying and stuck my head out in the hallway begging the first person I saw to please, please  help me..  finally the ER doctor came back in and said he couldn’t help me and that he had made me an appt. with a gynecologist upstairs and refused to give me anything for the pain. I got dressed and went upstairs to the appt., crying all the way.  

I walked in, a young PA asked me a few questions, looked at my file from the ER (which was the same hospital and file from my surgery a few years earlier) and immediately gave me a "cocktail" shot that within minutes eased the pain and what felt worse than delivery contractions.  He then told  me it was the endometriosis that was causing this horrible pain, and he would do his best to help me.  I began crying again, because this was the first time in over 22 years that anyone had believed me, let alone knew what was causing my pain and that their might be some relief. 

That very day that I was put on Depot Lupron.  I have been on Depot Lupron once a month for 12 years.  I understand the guidelines are for six months, but one week before my shot it starts all over again.. so with the shots the pain is as close to tolerable as it can be for nearly three weeks out of every month instead of the opposite. I have had my bone density tests and am good so I have been able to continue.  When I tried a 1mg add back within two days the pain was back full force and I had to stop taking them.

I am nearing 50 and  this time last year decided to see what happened if I stopped taking the shots... HUGE mistake.  I ended up in bed on norco (vicodinex2) for a week curled in a ball crying and being reminded of why I started taking it in the first place.    It is a year later and I am finally at a tolerable level 3 weeks a month, but having recently been diagnosed with Fibromyalgia as well am on daily medication for pain, but even though the Endometriosis has severly impacted my bowel , right hip and other internal organs.

I have not been scoped again to see the extent of the damage, but I know what is affected, I can feel it.  I have learned more about this disease in the past year than I have ever known and that has helped me understand and deal with and overcome the stigma surrounding it.

It is difficult to deal with pain to begin with, it takes a horrible toll on your mind body and spirit…  but to have that pain caused by a disease that is so unknown and misunderstood and surrounded by the personal nature of a woman’s period only adds to the toll.  I just found out eight months ago that my mother and all other women in my immediate family for at least four generations have been afflicted, all at different levels.  Had this information been known and available diagnosis might have come much sooner.  I am glad I did not have a daughter, only a son.

I would like to thank you for your efforts in raising awareness of this horrible disease...  I know that education in dealing with this dreadful disease is paramount..   The huge impact on one's quality of life both physical and emotional is highly underrated and getting the word out is so important.