Looking for Jeanne’s Endo Blog?

It has moved and gotten a new name. You should be automatically redirected in 6 seconds. If not, please visit
http://chronichealing.com
and update your bookmarks.

12/30/2008

Endometriosis Guest Blogger: One Brave Woman's Struggle Coping With Endometriosis... Melissa Ralston's Letter Of Intent To Do Battle! (UPDATED)

Please meet today's endometriosis Guest Blogger...

Melissa Ralston!




Melissa Ralston is a registered social worker with a degree in social work, psychology and several counselling certificates; a mom; and a fellow endo survivor of 18 years. She has led a Yahoo Support Group called "Goddesses of Endometriosis" for the past 7 years, providing emotional support and educational services on the topic of endo and available treatments.

Melissa started her endo symptoms when she was 12 years old, however despite persistent complaints to her doctor, was not treated adequately for this disease. Melissa did not receive a diagnosis of endo until her left kidney went into failure due to strangulation caused by the endo growths, and had to have surgery to remove the growth. Following the diagnosis, and while she was experiencing early miscarriage after miscarriage, Melissa had seen no less than 7 specialists, who offered no effective treatments other than "having a baby if she were married, but since she wasn't, a hysterectomy could be done". After a failed round of Danazol, followed by more birth control pills which never helped, Melissa found an endometriosis specialist on her own. Melissa was lucky enough to conceive and carry to term, and received her second lap within 3 months of her son's birth, during which she also received a diagnosis of stage 1A endometrial cancer. Melissa has survived the devastating effects of losing a job based upon her health status, having her relationships destroyed, as well as putting up with severe reactions to many of the medications that she has been on for treatment.

Aside from endo and cancer, Melissa lives with fibromyalgia, rheumatoid arthritis, inflammatory bowel disease, migraines, and asthma, many of which co-exist in many ladies living with endo.



EDITOR'S NOTE:

I have had the privilege and honor of getting to know Melissa over the past few months through extensive communications via email and Facebook. Like so many endometriosis patients, she has been through great adversity. Melissa has shown great leadership and has supported the endo cause a great deal. Her sense of humor and positive attitude often leave me chuckling. Her emotional journey is compelling. Even more compelling is her positive outlook and hopeful attitude that endo cannot and will not defeat her or take away her hope. Melissa inspires other chronically ill patients!

Melissa's online support has helped a great number of endometriosis patients.

Here is Melissa's letter to her endometriosis!

Dear Endo Cells,

This is your official notice that I have had it up to HERE with you. For far too long you have been causing me nothing but pain; physically, socially, and emotionally. Luckily you haven’t caused me financial ruin as I do have top of the line pharmaceutical coverage, although you have made it difficult for me to work at times. I am here to say that I am no longer going to let you get away with the path of destruction you have left in your wake.

From the time I was just a “baby” of 12 years, I have felt your unwavering disruption to all that is joyous in life. You destroyed my blood counts through the intense, prolonged bleeding “cycles”. The birth control pills that were prescribed to “regulate you” seemed to have no effect on you whatsoever. Week after week I would find myself at the ER, to the point where I believe I had frequent flier miles, if not at the very least having my file labelled as a drug seeker. However, even the best pain drugs out there that they would prescribe would still leave me in pain. At one point, you were still causing me pain despite taking Percocet every 4 hours, long-acting morphine every 12 hours and Demerol every 6 hours for the “breakthrough pain”. Is there even such a thing as “breakthrough” when the pain doesn’t go away to begin with?

I’ve done multiple pharmaceutical treatments to get rid of you. You tricked the birth control pills, every brand that I’ve tried that is, still continuing to cause me pain and heavy bleeding.

You didn’t like the injection of Depo-Provera, so much so that you decided to cause me to have convulsions, mood swings, severe depression, heavier than even heavy blood loss leading towards blood transfusions, all of which ended with me having my first of several "D&Cs", all in the name of trying to get rid of you. I did two rounds of Danazol, which helped to slow you down a bit, but in the end it appears to have led to the onset of fibromyalgia. Who knows maybe I was also destined to have fibromyalgia appear at some point in the future. I have tried the NuvaRing, which only lasted a few hours before you rejected that treatment completely. At least it was a quick decision. I had a Mirena inserted, you still decided to bleed every day for 6 months and then decided to have regular cycles anyway. I added the Arimidex and Micronor to the mix, you still decided to be hormonal pain in the butt by not responding to three medications all used at the same time. Because of these treatments, my risk of cancer has been raised, especially since I already do battle against endometrial cancer. You have also decided that you hated my left kidney and killed it by cutting off the blood supply. Thanks again. At least when you attacked my kidney you made the doctors sit up and listen and I finally had a name to call you other than hell.

[Editor's Note: Here is some information regarding how endometriosis can affect the kidneys in some patients]... See NDT: Nephrology Dialysis Transplantation.

You have devastated my dreams of a large family, leaving me with only the hope of the possibility, however slim, of having one more child. You have found me pregnant quite a few times, but with the exception of my beautiful Jacob, you have taken those away from me. It’s a pain that I will never get over, however it is easier to get through over time.

You have caused me great emotional pain. When you are a young teen, you want to fit in more than ever with your peers. However when you have to take days off school at a time, every month, this doesn’t bode well for friendships. You want to be able to go hang out with your friends, but when you’re exhausted and in pain, the only place you end up going is bed. You have seen many boyfriends come and go, unable to withstand the fear of someone they love never getting better, or the burden that our caregivers go through. You have met with several doctors, prior to finding the great knight who is determined to slay you. These doctors all suggested pregnancy, but with you endo, pregnancy appears to not want to stick with my body. Many times I’ve been tempted to have a hysterectomy just to cut you out of my life, however I know now that it’s not likely to help me out oh so much considering you’ve attacked my bowels and bladder. I’ve had you cut out of my bowel, but you make a sneaky return. I’ve had you cut out of my bladder, but the real issue might be your counter-part, interstitial cystitis. I used to have more bad days than good, and that made me one very sad lady.

I’ve taken the few gifts that you’ve given me; experience, knowledge and a driven desire to kick your butt and used it to help others. For the past 7 years I have run a support group for women with endo called Goddesses Of Endometriosis. Close to 1000 members and still growing, I have been able to use your negativity towards doing good, helping others to battle this disease at where they are at on their journey. You have allowed me to meet, educate and receive wonderful thank you notes from women all over the world. For this I am grateful, as helping others helps me at least feel like I’m contributing something towards getting rid of your existence. The website is: Goddesses Of Endometriosis.

I am now embarking on my next journey with you, trying to conceive another child with my partner. Leaving the medications behind has reminded me of just how much I dislike you. But I am determined to continue on with my life, with or without you. I am not going to let you destroy my dreams of one day completing my Masters and going into private therapy practice. I am not going to let you destroy my desire to have a happy family life. You may still make your annoying self known to me, but the only way you might limit me is physically. I am not your emotional and social hostage.

Sincerely,
Melissa Ralston
Leader of Goddesses Of Endometriosis (Yahoo Support Group)
Site for this group: Goddesses Of Endometriosis

EDITOR'S NOTE:

I thought Melissa's story of courage and hope would be the perfect way to round out the year.

Happy New Year!


%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%

UPDATE:

Melissa started a new endo blog tonight and I just had to update this post to reflect it!

Endometriosis: Facing the Battle Head-On


See my blog roll entry titled:

A New Blog -- "Endometriosis: Facing the Battle Head-On"... {{{{{ NEW BLOG AS OF 12/31/2008!! }}}}}


%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

11 comments:

Yaya said...

Melissa,
Thank you for sharing your story. I am in the stage you were in of recurrent miscarriages. It seems like there is no silver lining for me. I lose another ounce of hope with each passing day. :(

Thank you for having the courage to help others who are suffering.

Alicia

Jeanne said...

Alicia,

I'm so sorry for everything you have been through! :(

As I have said before, I look at you like a younger sister. I wish I could find a way to give you some comfort!!

Your courage & determination inspires many, many others!!!

Love,

Jeanne

Melissa Ralston said...

Alicia,

Hope is the one thing that we have to maintain and the one thing that is hardest to do so. It's devastating when we're forced to give up our dreams, especially in a society that still places a higher value on women going through childbirth.

Thanks for your kind comments :)

And thanks Jeanne for posting my battle. It looks beautiful!

Jeanne said...

Melissa,

Thank you for your support and inspiration to countless women!

I'm glad you like how the pictures turned out. I tried to pick ones that seemed relevant to your content! :)

Jeanne

P.S. Alicia, I got your email today about the "Mommy-Wannabe-Club" and will certainly be glad to help with that ASAP. My New Year's post is scheduled to publish at 12:01 am. I'll post your link ASAP. Thanks!! :) I'm about to go check it out on your post right now... holiday or not... unless I get kicked off the computer. :)

Mimi said...

This was great... so funny and sad at once. :D Thanks for putting this up.

Jeanne said...

Mimi,

It's funny (as in strange) but I had to re-read Melissa's story to see what part was funny.

You see, I am so used to Melissa's great sense of humor and her way of wording things that I was having trouble remembering what on earth was funny about all of the adversity she has been through.

As soon as I took another look at her story, it was pretty obvious that just the concept of writing a letter to "cells" IS funny!

Melissa has kept a very positive attitude and great sense of humor no matter what comes her way.

She has made me chuckle a great deal over the last few months. It's interesting how my brain had filtered it and had forgotten how funny the very idea of writing a letter to endometrial tissue really is! :)

So many women with endo have been through so, so much that I've noticed they often develop a sharp sense of humor that helps them deal with it.

You're right. Writing to endo cells is funny. Having the ability to joke about something so serious is a way of coping, I think.

Thanks for getting me to stop and take another look at this, Mimi.

I have met so many funny people through blogging. My philosophy is always "either laugh or cry". While there are times that the "crying" part is healthy, necessary, and appropriate... I try as hard as I can to laugh more than cry.

This doesn't always work for me but I try to focus on the positive. It's amazing how hard chronically ill patients typically work at focusing on the positive... against all odds.

I have met so many strong, funny women in 7 months of blogging. Sometimes it just amazes me!

Jeanne

Jeanne said...

Mimi,

It's funny (as in strange) but I had to re-read Melissa's story to see what part was funny.

You see, I am so used to Melissa's great sense of humor and her way of wording things that I was having trouble remembering what on earth was funny about all of the adversity she has been through.

As soon as I took another look at her story, it was pretty obvious that just the concept of writing a letter to "cells" IS funny!

Melissa has kept a very positive attitude and great sense of humor no matter what comes her way.

She has made me chuckle a great deal over the last few months. It's interesting how my brain had filtered it and had forgotten how funny the very idea of writing a letter to endometrial tissue really is! :)

So many women with endo have been through so, so much that I've noticed they often develop a sharp sense of humor that helps them deal with it.

You're right. Writing to endo cells is funny. Having the ability to joke about something so serious is a way of coping, I think.

Thanks for getting me to stop and take another look at this, Mimi.

I have met so many funny people through blogging. My philosophy is always "either laugh or cry". While there are times that the "crying" part is healthy, necessary, and appropriate... I try as hard as I can to laugh more than cry.

This doesn't always work for me but I try to focus on the positive. It's amazing how hard chronically ill patients typically work at focusing on the positive... against all odds.

I have met so many strong, funny women in 7 months of blogging. Sometimes it just amazes me!

Jeanne

Melissa said...

Thanks Mimi and Jeanne :) Several years ago during my psych degree we got to study visualization and it's effects on health recovery. While I don't necessarily believe that it's going to change a disease process, it does go towards helping to cope with it. There has been research done on children with cancer who were taught the techniques of visualization, and it showed a greater recovery through the treatments and less intense experiences of the horrific side effects. Similar studies have shown positive effects on adults as well.

Buddhist psychology (one of my areas of interest) also teaches the art of "speaking to your body" and really listening to the messages that it is sending. When we try to suppress the messages and pretend that they don't exist, is when we tend to develop more trouble. It takes more energy to ignore and pretend something doesn't exist, than to accept it and find ways of living with it. Mind-Body awareness is so important and yet in our "western" culture, it's so often overlooked.

I can see the humor in my experiences only because I choose to do so. For far too long I have lived with this disease and have experienced the intense frustration and sadness that goes along with it (not to mention the pain!). I've come to learn through my psych, philosophy and social work courses that it's possible to choose "happiness". To turn the negative into a positive. It too requires great effort, but it's an ongoing practice of mine through my meditation practice. If you had asked me 5 years ago for my take on life, I would likely have come across slightly different, definetly more negative.

I find myself often writing letters even if I don't intend to ever publish them or send them to people. The idea for me is just to get something down on paper that I can look back on in time and say "I survived that too". When I was pregnant with my son, I wrote letters to him, I still do. I've kept the letters as I think that it'll make a very valuable gift for when he is MUCH older! I've talked about being a single mom, his illness (he has epilepsy), my feelings and for each holiday I write him a special blurb. For example, at thanksgiving I will write what I am thankful for that year, for Valentine's Day I'll write about the special idea of love. It's sure to be a beautiful gift. It's something that I started to do when I found out that I had cancer.

I also write angry letters. These ones I tend to take somewhere and burn. It's almost cathartic to see my words and "feelings" go up in smoke.

Anyway, I'm rambling as usual. Thanks again for your kind words ladies.

Jeanne said...

Melissa,

Visualization is very powerful. I believe it is an excellent coping mechanism.

My husband and I took a meditation class from my acupunturist and it was extremely interesting.

I know I need to integrate this better into my daily life. I intellectually know I really need to do so. I don't know why I have to struggle so hard to do something that makes me feel good when I do it, helps me cope, and that studies have proven has health benefits like reducing blood pressure and inducing relaxation.

It shouldn't be so hard for me to set aside time for it but I struggle to do it as often as I know I should.

My acupuncturist is one of the most amazing, compassionate, intelligent people I have ever met. He has taught me about focusing on the present moment and it's something I need to work at more.

I know intellectually that dwelling on the past or getting anxious about the future isn't healthy.

I try to put the present moment stuff into practice. I don't always succeed but I try. (My acupuncturist is Buddhist, by the way). He is one of the calmest people I know. If only everyone could have that sort of sense of peace.

I have learned a lot since I have been getting acupuncture from him. I must admit that I have trouble putting some of the stuff he talks about into practice even though I wish I could!

You are very right that it takes more energy to suppress messages and deny their existence than to simply accept it!! I have made some pretty great strides in this area but I have a ways to go!

Mind-body awareness is huge and is absolutely not respected in Western culture the way it should be. It's hard for me to overcome years of "brainwashing" by Western society (for lack of a better term)... that is not in sync with the mind-body awareness that I KNOW is so important!

I too am far more positive than a few years back. I am not naturally funny by any stretch of the imagination. I don't come up with smart comebacks or witty remarks.

I have been known to pick my friend Alicia's brain when my blog is getting too "serious" because she is as funny as they come. I actually email her for ideas to help me lighten things up sometimes.

When I am funny, it tends to come out as being pretty sarcastic. This can be misinterpreted as bitter when in all reality it's not intended that way at all.

When I convert anger into humor, it is not as funny to others as I intend it to be. I have picked up some "gallows humor" from my husband over the years. He is one of those naturally funny people who can come up with very quick comebacks and smart remarks to EVERYTHING.

I have my own strange humor but it's usually kind of "sick humor" in the sense that I can joke about very upsetting things that some might not be able to joke about.

Maybe that ability is from hanging out with my husband. He can make almost anything funny.

I really like your letter-writing ideas. As readers here know, I tend to write my letters right on my blog!

I tend to write the inside of my brain on this blog for the world to see. That can be kind of scary to do (!) but the interesting thing is that when I let myself hang out there like that, people seem to really appreciate it.

So I try not to worry about how what I say will be interpreted as just say what I need to say.

Yes, I sometimes obsess a bit about how to word things and I worry about the responsibility of "covering all the bases" when I write because I want to help people and don't want to "miss anything" important. Yes, I can drive myself crazy with this.

I know I can't control how people interpret my message or what they do with it but I feel a responsibility to "get things right" when I write. Sometimes I drive myself a bit crazy with this process. However, writing is cathartic overall.

Melissa, as you know... I'm having a really tough day as I messaged you earlier.

Mimi, you got an interesting message from me today too.

Generally my writing can be a "distress signal" at times.

Some days (like today), I probably should just shut down my computer entirely and not write. I actually did that earlier today for a few hours.

Maybe I need a few more hours of "non-computer time". I think I'm pushing burnout pretty hard.

I'm just having a really bad day. I guess I'd better go find a way to laugh at it!

If you have any ideas, let me know. My energy level today is in the basement!

Thanks for listening, ladies! :)

Jeanne

P.S. Melissa, as far as "rambling", I am the queen of that. :) So you don't have to worry about feeling that you're "rambling" here. You're in the right place for that. :)

Jannie said...

Wow, what a story of heartbreak yet she tells it with humor in this letter to her endo cells.

You all are heroes to me, whether you intend to be or not.

God bless you all.

Jeanne said...

Jannie Funster,

You know a thing or two about FUNNY *AND* about ADVERSITY!

Yes, Melissa has a wonderful sense of humor! Interestingly, I have found that SO many endo patients do!

I think it's often an effective coping mechanism for diffusing tension, breaking sad/angry moods a bit, and dealing with what happens even if we don't like it.

I have met some AMAZING women both offline and online who have managed their endo with grace, strength, and dignity. (That includes you, my dear)!

Funster, you know the power of humor and you spread that funny bone of yours on your blog to make people laugh and to cheer them up.

That makes YOU a hero of mine!

God bless you, Jannie Funster!

Jeanne

HAVE YOU SIGNED YET?? Please Sign Endometriosis Awareness Petition Below! Awareness YEAR-ROUND!