Monday, October 28, 2013

Seeking the New Normal- Endometriosis, Chronic Pain, Spoonie- Nancy Peterson

I really found this article very informative and I felt that I needed to share since we all suffer loss of who we are and who we once were. What is normal anymore for us anyways? Will we ever be who we were before diagnoses?

Seeking the New Normal-Nancy Petersen 

(This article was written for women trying to cope with endometriosis but applies to a much broader audience. Others have addressed the lack of understanding in chronic illness, one of the best is the web site "But you don't look sick" and The Spoon Theory written by the web site owner, Christine Miserandino. A community for support, education, and inspiration. Take a minute to read The Spoon Theory, helpful for family and friends trying to understand chronic illness and its impact.)

Waiting for Normal to Return: Newsflash, it’s not going to happen; even if you find a successful treatment or surgery and reach freedom from pain. Normal shifted when you were not looking.
You have been thru hell pain-wise, often diagnostic-wise and sometimes do not get the help you need. Life has changed because of these very traumatic difficult episodes of pain and medical interventions.

While we wait for normal to reappear, we are often in the stages of grief, loss of the quality of our lives, sometimes our partners, our fertility, other times our overall health, loss of the support of those around us, either because we got better and are no longer the dependent needy person on the couch with the heating pad, or because we did not get better but are now stronger, more knowledgeable, more confident in our decision making as we become more educated. As we work thru our losses and our wins if they come, we are looking for our familiar life. Often those around us are looking for our "old self" and they find it hard to recognize and cope with the new, grieving, perhaps stronger, more independent person.
The literature reflects the thinking of several experts in the grieving field, and I have one link posted here.

The 5 Stages of Loss and Grief | Psych Central

While waiting, it gradually dawns on us that where we are now is the first step in the new normal in our lives. Sometimes that is uncomfortable because it is so unfamiliar. And if your life has changed dramatically for better or worse, those around you are pretty uncomfortable as well. The dynamics of your interactions are changing, and it requires joint efforts to reconnect on this new level. Sometimes those re-connections do not go well, and you find yourself looking at a parting of the ways, or intense therapy to try to find the common bonds.

I am aware of cases where women were in so much pain and so dependent that family or spouses were continual care givers. When pain and disability were resolved, these same caregivers no longer were needed in that role. This dramatic disruption of the routines in care giving can add inordinate stress to relationships and family life. When we are prepared for and aware of this potential, we can sometimes talk it through as we begin to see changes take place, or pain resolved. In some cases just accepting that fertility will never be resolved, can be a source of pressure from spouses, significant others, partners or potential grandparents. These folks may not recognize they too are grieving and that what their expectations have been all along may never be met.

For me, the first 18 months after I retired, I was confined to a power chair, not the life I had dreamed of (fishing the Cascade lakes, gardening, hiking the great Central Oregon outdoors). Pain was a constant companion, sleep just never came. Gradually as the diagnostic hurdles began to give clarity to my situation, it was clear unless I figured out what this new normal was going to be like, and adapted to it, I would never get out of the chair nor have any of the retirement about which I dreamed and planned. (actually this was a very good lesson in : Life is what happens to you while you were making plans).

Physicians now in charge of my case began vigorously working on getting pain and stability under control, still no one saw me casting a fly line or turning a garden bed anytime in my future. I began to read about adaptive gardening, got a power scooter that would work better in garden paths, found an old tractor with a front end loader on it, ( I could barely even get up on the tractor when I first got it, I was in such bad shape). I found some help to build raised garden beds in exchange for organic vegetables. I found ways to bring water to the beds so I did not have to pull hoses around. This is enough of the story, to try to show, I think, building a new reality with what physical capacity I had left, could maybe restore, or could adapt around. I think you get the idea, that instead of muscling thru, which I could not do I tried to find a way around. I had to let go of a little, though, too. My spine simply will not tolerate fishing, so a little interest in photography began to fill in those gaps.

I hope I have at least given you the idea that if things don't return to normal as you want, you can begin to create a new normal. It may take some experimentation, trial and error, and even developing new tools or hobbies, or lives. But in time you can do it. Let go of searching for normal and move on into a new way of being with whatever resources you have or can muster.

Here is the article for the 5 stages of Grief

Parenting & Endometriosis (PPD/Co-Morbid Diseases)

I read an article that inspired me to write about this topic. Not only was I not diagnosed with Endometriosis at the time but I was a single mother living with Fibromyalgia and Chronic Fatigue syndrome.

I was diagnosed with Fibro when I was 17 yrs old, so young that people would not even listen to me when I talked about. I suffered debilitating fatigue and could barely function and the body pain I experienced was so unreal that I had a hard time even explaining it to doctors because I hurt all over. I really think that because of my uncertainty is why it took 14 yrs to diagnose Endometriosis.

I became pregnant during an abusive relationship (sexually, physically and Mentally) while trying to find a pill that I wouldn't continuously bleed on. I was 23. I couldn't believe I was pregnant, I was so upset because of the circumstances I was in, how could I raise a child in this environment I was living?

The pregnancy itself for me was great as I never felt better, I was never sick, nauseated or anything however the stress from the abusive relationship was coming to the point that I wanted to kill myself. I remember sitting there after the floors had just been varnished and no one was supposed to be in there but I was there wanting to die. In my mind there was no way I could continue this relationship without my daughter being abused.

When Grace turned 5 weeks her father was mad at me for God knows what as it was all the time, that he took Grace and and slammed her on the couch. I lost my bloody mind. I called the police and they escorted me out. I left his 5 yr old son behind as there was nothing I could do for him and there would have been no way I could have helped him if I could barely help myself. He eventually stopped communication after I told him I would call the police if he ever called me again. Court ordered supervised visitation with my parents in which he never to this day followed through nor did he pay for child support.

I was completely alone, exhausted, mentally breaking down. I didn't know how much longer I would be able to cope with the Chronic illness I was suffering from and raising a child on my own with absolutely no help whatsoever.

I managed to get into subsidized housing but as soon as I went back to work the rent went up plus I had to pay for child care. To this day I have no idea how I managed at all.

From birth to age 4 I can't even remember being there mentally. It was during that time I saw this ad on TV about postpartum depression and realized that I had undiagnosed PPD that turned into Manic Depression because it was never treated. I went to the hospital told the doctor what I was going through and he gave me sleeping pills and told me to go home. He didn't even offer any services that could help me just "Go home and sleep it off".. Well lets see, I had the most spirited baby who could not be picked up, put down, held, fed etc. All she did was cry at at times slam her head down in the floor because she was frustrated. She would cry as a baby for 5 hrs straight.

At its worst moment I finally went to see my doctor at the time as I was losing my marbles literally. I was seeing demons in my room at night and I was just not sleeping enough. The doctors secretary booked me in and when I got there I realized she must have squeezed me in because of how urgently I needed to talk to him. Well he comes over to me and says "What exactly is your problem today that you have to bud in front of all these kind people?" Are you fucking kidding me? I looked at him and told him to "fuck off" and walked out and bawled all the way home. I had no one. I wanted to throw my child and then kill myself I was that messed up mentally. I even called my mother and she said to me "I had 3 kids I never had PPD either do you?" Good Lord. Why did people not want to help me?

So with all of this going on such, as going back to work, Court hearings, affording child care and rent with no other income but my own, no one to watch her ever, Fibro flares and exhaustion were really sending me over the edge not to mention I was having more migraines than ever at that time. Random too.

When my daughter was 4 I decided to do this colon cleanse as I was having such bad rectal pain and was always constipated. Well I have to say I need to thanks Colonix as that was when the pain got so intense I went to my new doctor and had an ultrasound done. There they found a 10 cm Complex cyst on my left ovary. During that time I was put on Marvelon continuously to try to "shrink" the cyst and it was night and day with my hormones. I couldn't believe how I great I felt on the pill. I couldn't have cared less of what was going on inside of me because for the first time mentally I was stable.

In 2007 at the age of 27 I was finally operated on and diagnosed with Stage IV Endometriosis.

Looking back now I feel that a lot of the mental anguish I went through was due to Endo and my hormones being whacked out. Also I really strongly believe that the Fibro I was diagnosed with was induced by the Endo and the Chronic Fatigue was actually the Endo as well.

I am at a good place in my life right now by I am still Chronically ill. I love my daughter so much and I feel that some days I have let her down so much as a mother as I can't do the things she wants me to do at times. She is a very high maintenance child and always has been. She saved my life literally. I would not be where I am today if I hadn't gone down the path I did and rose above all circumstances if she wasn't in my life.

So although there has been some really crappy days the good ones outweigh the bad. She understands the spoon theory and she gets when I am tired. She is 10 yrs old now and I am not sure what she will think of me when she is older but she definitely has empathy since she has seen me go through such low times.

Living in Chronic pain with co-morbid diseases and having a child is an incredibly hard time and I did it alone so I wouldn't know if you had someone helping you if it would make a difference. All I know is that I made it and I am glad I didn't take my life or hers and that I can look back and see how very far I have come.

Would I do this again? Hell no.

Wednesday, October 23, 2013

Suicide & Endometriosis

I think this topic is a very important one to talk about and what peaked my curiosity was the fact there are no statistics really for this. Yes people commit suicide because of Chronic pain, Depression, Bipolar etc however what percentage of those people had Endometriosis and was triggered by the disease, the amount of care and understanding they got or the Hormone med etc.

I have posted about this girl named Kristi An Rose before but I think it should be brought up more because there needs to be awareness raised about Suicide and Endometriosis and that her life was not taken in vain. She deserves recognition for the fight she went through as well all know can be so debilitating and painful. Her mother wants her story to be told and why she died so that no other female will go through what she did and now even 4 yrs later we are still no further with awareness.

Click on the photo for her story

I have suffered from Depression since I was 10-11 yrs old and that is when the chronic headaches started. By the time I was 13 the Chronic pelvic pain started, Migraines by 15yrs that would leave me hospitalized, Fibro by 17yrs old and finally after 14yrs of the onset of Menstruation Stage IV Endometriosis. I have contemplated suicide more times than I can even count whether it be the treatment from doctors, the massive pain from Endometriosis, Relationship deterioration because of the disease and sexual dysfunction, The hormone medications you are put on to supposedly "Help the Endo from Growing" make you feel so isolated and alone and no one could possible understand what you are going through unless they live it. This disease has robbed my life in more ways than one. Last August I was prescribed Visanne to "treat the endo" and by month three I was so far mentally out of it and depressed that I was sitting in my car wanted to die that moment. I sat there for an hour and cried and in the end my daughter is who I thought about and why I didn't take my life that day. I could never ever make her feel the pain of me committing suicide because I would have totally changed the course of her life and I know her personality I am her world but for that hour the thoughts would not leave me. I wanted to die, I was done, done with the pain, done with the doctors and how after 23 yrs I am still treated with absolutely no respect for my well being or quality of life this disease has left me with. I chose to live not for me but for my daughter and that is the only reason I am alive right now because if I did not have her I would have offed myself a very long time ago. 

What I have learned in the last year from Dr. Redwine has made me open my eyes and see the facts. Nothing except complete excision (cut out to the root) will give you any kind of relief, no medication, not laser surgery etc. The fact remains that we are still suffering and no one seems to care. We don't have the surgeons that are skilled with this disease. Hormones work for certain people and not all and some are worse off being on them and they do NOT stop Endometriosis from growing, they do NOT suppress Endo, the purpose for these meds is to stop ovulation and periods therefore hopefully stop the pain but if you do not have excision surgery the chances of that even helping are minimal and the side effects are just not worth it so you end up in debilitating pain unnecessarily. 

I asked this question about the stats on Suicide and Endometriosis on the great EndoMetropolis page on Facebook that is run by Dr. Redwine and Libby Hopton. Libby had some great information for me about this. Please read her response to me below. 

"No formal studies. Of the limited research undertaken into the comorbidity between endometriosis and psychopathology, a strong association has been found between endo and depression (unipolar and bipolar) and anxiety. Probably no surprise. I think several mechanisms are likely at play though (not 'simply' the emotional impact of this disease and the pain and debilitation it often causes)... the disease itself could potentially contribute to or underlie cytokine-induced depression"
"Here's part of a paper I wrote on the subject. I can send the accompanying reference list/literature separately if useful."

Research on the quality of life of women suffering from endometriosis reports a significant negative impact in all domains of life, including mental health (Nnoaham et al., 2011). Of the limited research undertaken into the prevalence of psychopathology in women with endometriosis, depression has been identified as highly prevalent among these patients (Ferrero, Giordano, Abbamonte, Ragni, & Ramorgida, 2006; Lorencatto, Petta, Navarro, Bahamondes, & Matos, 2006; Sepulcri & Amaral, 2009). Prevalence rates of depressive disorders in cohorts of women with endometriosis with associated pelvic pain range between 46% and 86% (Ferrero et al., 2006; Lorencatto et al., 2006). Even in women with endometriosis who are asymptomatic, the prevalence of depressive disorders has been observed at 38% (Lorencatto et al., 2006), markedly higher than the estimated prevalence among women in general (Weissman & Olfson, 1995).

Several possible mechanisms may be involved in the heightened tendency towards depression in endometriosis: Hormone therapies employed in the palliative treatment of the disease have been linked to depressive symptoms (Warnock, Bundren, & Morris, 2000); infertility, regardless of cause, is associated with repeated losses, feelings of guilt and reduced self-esteem (Abbey, Andrews, & Halman, 1992; Mahlstedt, 1985; Sbaragli et al., 2008); and the impact of chronic pelvic pain on a patient’s personal and social relationships, work, and leisure time could contribute to the emergence of depression (Fourquet, Baez, Figueroa, Iriarte, & Flores, 2011; Nnoaham et al., 2011).

Furthermore, the inflammatory response of the immune system triggered by the presence of endometriotic lesions may play a role in the onset and maintenance of depressive symptoms in these patients (Nasyrova et al., 2011). Intraperitoneal studies in women with endometriosis have found that ectopic endometriotic lesions secrete chemotactic molecules, which in turn instigate the activity of immune cells in the peritoneal fluid, triggering cytokine release (Gazvani & Templeton, 2002; Harada, Iwabe, & Terakawa, 2001; Oral, Olive, & Arici, 1996). Women with endometriosis have been found to have an increased concentration of proinflammatory cytokines in the peritoneal fluid and blood serum, including interleukin-1 (IL-1), interleukin-2 (IL-2), interleukin-6 (IL-6), interleukin-8 (IL-8), and infereron- ɣ (Barcz et al., 2012; Nasyrova et al., 2011).

The role of cytokines in the aetiology of depression has received ongoing focus in the literature (for a review see Raison & Miller, 2011). Individuals with system-wide elevated concentrations of certain cytokines due to underlying chronic inflammatory disease commonly present with symptoms of ‘sickness behaviour’ (see table 1) (Dickens, McGowan, Clark-Carter, & Creed, 2002; Dunn, Swiergiel, & Beaurepaire, 2005; Foley et al., 1992; Minden & Schiffer, 1990). Likewise, the majority of patients undergoing IFN-α protocols involving sustained cytokine exposure for the treatment of Hepatitus C and certain cancers experience sickness symptoms shortly after commencing treatment (Gohier et al., 2003; Raison, Demetrashvili, Capuron, & Miller, 2005). There is considerable homology between some of the symptoms of sickness behaviour and the diagnostic criteria of idiopathic Major Depressive Disorder (Capuron et al., 2009). Several cytokines have been identified as possible markers in the emergence of sickness symptoms, including IL-1, IL-2, IL-8, LPS, IFN-α, IFN-β, and IFN-ɣ (Gohier et al., 2003; Kent, Bluthe, Kelley, & Dantzer, 1992; Levine et al., 1999; Maes, Bosmans, Meltzer, Scharpe, & Suy, 1993; Musselman et al., 2001; Nasyrova et al., 2011; Owen, Eccleston, Ferrier, & Young, 2001; Valentine, Meyers, King, Richelson, & Hauser, 1998).

Table 1
Sickness symptoms
Hypomotility (Lethargy)
Hyperthermia (Fever)
Hypophagia (Anorexia)
Decreased interest in activities
Decreased sexual activity in females
Increased time spent sleeping
Physical symptoms (headache, muscle pain, nausea, and shivering)
Note. Adapted from Dunn et al., 2005

Monday, October 21, 2013

OHIP Turns a blind eye to suffering

I wanted to write about an article that I had read not too long ago and since I am in the process of fighting for out of country surgery it would be good to talk about.

Here is the link

The same surgeon who is being scrutinized is the surgeon that operated on me in 2007. He refused to operate on me and wasted my time for at least 2 yrs and put me on Lupron saying that if the fluid in the cul-de-sac went away it was Endo and he would operate. Well I went back to him after the 3 months of hell and he didn't do an internal ultrasound just told me it wasn't Endo because I was having pain still. He is ridiculous. He also knew that I was going to the Wasser Pain clinic and told me the surgeon there was good and that he trained her and if she agreed to do it then he would do it. Does that even make sense to anyone? So I wasted 2 yrs taking days off work to go to these appointments only to be told I had Neuropathic Pain Syndrome not Endo and sent me off to a baby doctor who botched my surgery.

That being said I am not going to get a referral from this surgeon as the article says "Only one specialist held an open door to her care, a Canadian schooled almost entirely in Ontario. But Dr. Ken Sinervo had committed a Cardinal sin as far as OHIP was concerned -- he offered life-changing surgery outside the country in Atlanta, Georgia."

How is giving the patient the best care a Cardinal sin? When will Canada wake up and realize that we do not have the surgeons available to even come close to providing quality of life?

I am filing my appeal today so we will see how this goes. It doesn't look promising and it becomes more depressing as I think about how my future will be. I have the top surgeon who won't operate, another who botched my surgery and said it was too complicated and closed up and now I am left with no one, how is that fair?

Sunday, October 20, 2013

Hospital ER Treatment and Endo

I feel that I need to discuss this as I was really bothered when I heard another Endosister tell me that an ER doctor told her he was going to call the cops if she came back to the ER again because he felt she was a drug seeker.

When she told me this I wanted to cry for her, for the injustice and for all the crap that we as Endosisters go through everyday with this disease.

We should have no problem going to the ER but in fact it is very well known that we are treated as drug seekers or they have no clue what Endometriosis is to begin with.

According to an article I received from the CEC Endometriosis remains the 3rd leading cause of gynecologic hospitalization in the USA so that being said why on earth are these ER doctors not being updated with the facts and knowledge about this disease?

I dread the hospital I go to however the one ER doctor is pretty nice and understands more than I thought he would however if I go on a day he isn't there I better just pack up and leave because I am only going to be treated like some drug seeker.

When will we be treated like normal human beings?

We have no GP's that understand the disease, most Gyno's want to push Lupron or some other drug of choice but nothing to help with the pain. There are limited doctors around the world that can properly excise this disease and most of those surgeons at some point will retire then what?? What will we do then?

I can't understand in this day in age that this disease is still considered "taboo" Give me a break already.

I know for me no matter what I am advocating for this disease until I die, until there is change and until we are heard and treated with the dignity we deserve.

Friday, October 18, 2013

Weight & Endometriosis

The battle of the bulge is what is what I like to call it. Chronic inflammation, Bloating, weight gain and pain.

We as Endosisters know all too well how much of a problem this is, how annoying it is and how painful it is.

I am Wheat, Spelt and Dairy intolerant so I do my best to remove those from my diet but really it is hard isn't it? I have tried every single diet known to man and there were very few that helped. Paleo takes away all grain and dairy and for me that did help with the pain in the bowels that I get but I still felt bloated.

The hard part with dealing with this problem is medications and hormones because you are constantly craving carbs and usually bad carbs and complete junk. Well for me that is the way it is for sure.

Since my first surgery in 2007 the same year I was put on Marvelon continuously after Lupron I have never been able to keep weight off and I am constantly bloated all the time. I don't get a period which is great but I hate feeling like I am pregnant all the time.

It has been 6 yrs now and I have been on at least one med that entire time so the chances of anything changing for me is minimal. I would say however I don't exercise because of the extreme chronic fatigue from the Endo and Fibromyalgia. I am tired and have no energy ever so I can see also why the weight seems to stay on.

Where does the weight go with you? Mine for sure is in the thighs, hips and Belly. Never to the place where I want it to go like my breasts LOL..

I know that Diet, lifestyle, and exercise are key to combating this problem but as any Endosister knows sometimes its just quite impossible and you get down on yourself. It is like a vicious circle.

What do you do to help with Chronic inflammation, weight gain and bloating?

Thursday, October 10, 2013

Bowel Pain and Endometriosis

Today I am going to talk about Bowel Endometriosis. The symptoms for Bowel Endometriosis are;

  • Painful bowel movements
  • Constipation
  • Diarrhea
  • Alternating constipation and diarrhea
  • Intestinal cramping
  • Nausea and/or vomiting
  • Abdominal pain
  • Rectal pain
  • Rectal bleeding

When I was 7 I had bowel surgery for Intestinal Volvulus and I feel that a lot of the symptoms I have including having Endometriosis on the bowel contributes to the pain I suffer in daily. Food is my enemy on every level.

From the time I was born I would regurgitate a lot of Dairy and wheat so finding out I had an intolerance to Spelt, Wheat and Dairy made perfect sense thinking back. My pain level from surgery at 7 yrs old until I was 14 yrs old was not bad at all in my bowels.  I never had side effects from the surgery and because I was young I guess I healed quicker than an adult would.

When I turned 15 I started to get severe rectal pain. Sharp stabbing pain that would come on at anytime. I never put two and two together with my period because this pain would be random. However the day before my period my bowels would completely evacuate and that was very abnormal for me as I was always constipated. That was the indicator for me to start popping Aleve or Naproxen whatever I had on hand. If I didn't and I waited and my period came I would be in for it because no med would help at that time. During the course of the week during menses I would become constipated again and the pain would be so intense until around the 5th or 6th day when I could finally go then the pain would subside to tolerable cramping (if that is even what you would call it)

I finally went to see a Gastro and she performed a colonoscopy at 15 yrs old and found nothing called it IBS. UGH!!! Never believed it but had no choice to let it go since every test I had came back negative.

During my surgery they found and removed a recto-vaginal nodule, a Mensentric cyst (Mesenteric cysts are rare and are found in approximately 1 of every 100,000) in the sigmoid colon plus bowel Endo. The doctor shaved and cut out the Recto-vaginal cysts and I was told all the Endometriosis was removed.

After all that was done the rectal pain disappeared, it no longer hurt to have a bowel movement but I was still constipated, so instead of being 7+ days constipated it was 3-4 days before I could go.

Three years after my first surgery in 2007 I started to get bad pain the right side underneath my 3 inch laparotomy scar it was like the stool was getting stuck in that area and would become trapped and you could see a huge lump and the pain was intense. Also it coming down the rectum I started to get a sharp knife like pain and would feel like it ripped me. I started to do enemas after my surgeon told me that it wasn't Endo and to move on. How can someone move on in this sort of pain? That is the one thing I never understood about this doctor at all. Needless to say had to find a new doctor because he refused to operate on me again because I was too high risk because of the damage done from the first surgery.

While waiting the 3 yrs I could barely digest food, so no raw uncooked food, no meat, no wheat or Dairy because it would just make things worse, so I had to juice and have soup and soft foods like mashed potatoes and rice etc just to eat and not feel pain. I was doing 3 enemas a week just to not be in pain and to be able to go to the bathroom.

In February of 2013 I finally convinced a surgeon to operate on me after an entire years hopped on meds that I knew wouldn't help me just to satisfy them and tell them again that the pain is still here the meds have done nothing!!

I did have a partial bowel obstruction from adhesions as well as an embedded ovary and ureter in the same area. My left ovary was stuck to my uterus and the uterus was stuck to the bowel. Needless to say the surgery got too complicated and she closed up leaving the organs embedded into the pelvic wall only to cause me problems later. UGH

So here I am in pain when I eat. It is like my body is rejecting food and can't break it down properly. I have no idea what to do next or if this is a permanent thing thanks to Endo and taking 14 yrs to diagnose. I feel that I have to accept that the damage has been done and it is not irreversible and that I have to come to terms with this being my life. Right now I am just not there yet.

Wednesday, October 9, 2013

Rejection #2 for out of country surgery.

I was so saddened to pick up the phone this morning to hear some young female government worker talk to me like I was some piece of trash. She told me my case was rejected and pretty much said " You sent this information again without an Ontario Specialist signing off so its DENIED AGAIN!" in a snotty ass tone.

I am not an idiot. I understand that I need an "Ontario Specialist" to sign off on this but we don't have many here in Ontario and the one that operated on me will not write it, that I can guarantee. Dr. Sinervo was trained by this doctor so now that puts him in the hot seat with OHIP, like hell he is going to do anything to support us females with this disease.

The one thing that bothers me the most about this doctor is that when there was an article about this female that went to Dr. Sinervo for surgery because there was an 8 month wait for an appointment with him and another 8 month wait for surgery he pretty much through all of us Endo sufferers under the bus by saying its not a life or death disease!

Actually yes sometimes it is, when it comes to renal failure, bowel obstructions etc. We have lost the quality of life, is that not important at all? Most women have lost their jobs due to the disease itself as there are so many symptoms or it has effected their jobs and are being punished for either taking too much time off for appointments, surgeries, and for being in chronic pain. Some have even lost their jobs. I am just lucky I have 18 vacation days and that I have been with this company for a long time. It helps when I need those days off. However I can't even talk about this disease to anyone at my work higher up as they are all men. And when I have tried the conversation always makes the man feel uncomfortable and I feel ashamed. So unfair.

So here I am with no surgeon, in pain with so many complications and no one to help me. I pay taxes for my health care and I go to work every single day and bust my but in pain or not and the government refuses to even listen. Now is the appeal process. This ought to really drain me on top of everything else going on in my life.

I am sad today. I am sad that I live in a country where you pay for healthcare and yet you don't get the skilled surgeons to help you. I am sad that this disease is so hush hush because its gynecological and God forbid we talk about vaginas, blood, uteruses, bowel movements etc. Well hey this has been my prison and its how I cope and survive. How do you even make it through the day knowing that no one can help you and your own country who has this choice to say yes or no refuses. UNREAL!!

Heather from CEC in Atlanta has been amazing and I want to give her a shout out because she has been with  me every step of the way and if I am mad she is double mad. She understands the pain she gets it, she knows what we go through. She is amazing.

Hear is hoping my appeal process doesn't cause me more stress, depression etc because that would just cause a major flare for me and I don't think that I could handle one right now.