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Showing posts with label support. Show all posts
Showing posts with label support. Show all posts

1/11/2009

Guest Blog Post: Kelly Damron's Journey With Infertility - Author Of "Tiny Toes: A Couple's Journey Through Infertility, Prematurity, and Depression"

Meet Kelly Damron.



I am a fan of Kelly's blog Twin Peas Blog And Podcast and I asked her if she would be so kind as to write a guest blog post for my blog. She kindly agreed to guest blog and here is her thorough, in-depth, and compassionate article. I am thrilled to share it here.

Here is some information about Kelly taken from her blog profile:

Kelly Damron survived infertility only to experience the premature birth of her twin daughters. She rebuilt her marriage that had been on the brink of ending in divorce all because of infertility. In her blog she talks about infertility and much more.

Below is Kelly Damron's guest post. I'm honored to have her guest blog here!

Many women who have endometriosis struggle with infertility. For purposes of full-disclosure, I've never had endometriosis. I cannot imagine the pain you feel each month nor can I relate to the stress that disease places on your body. However, I can relate to your desire to have a baby and how infertility can compound the challenges you already face.

Quickly I'll share my story. My husband was diagnosed with male factor infertility (he had poor sperm). We had tried to conceive spontaneously for 12 months before both of us went to the doctor for testing. I underwent every possible test to determine if I had blockages, endometriosis, lesions in my uterus, etc. You name it and I was tested for it. With male factor infertility, as with endometriosis, your options for getting pregnant can be limited. In our case, the best option was in vitro fertilization with intracytoplasmic sperm injection (ICSI) -- which is where they manually inject the sperm into an egg because the sperm isn't able to fertilize the egg on its own. We were lucky and conceived using IVF/ICSI. We thought we were really lucky when we found out it was twins. After all, many women I meet tell me how they want twins or that they wanted twins. However, my twin pregnancy ended early at 30 weeks gestation. My girls were only 2.5 pounds each. They spent 7 weeks in the Neonatal Intensive Care Unit. One of my daughters had a preemie disease and had a life saving surgery when she was only 4 weeks old. Today my girls are healthy and happy. They don't seem to have any long-term consequences of their prematurity. We are lucky and truly blessed for the gift we have been given. Thank goodness for medical advances - they got us pregnant, kept us pregnant and kept our girls alive until they could survive the outside world on their own.

Now onto the real reason for this post. Jeanne asked me to write a post about infertility for her readers. I'm honored that she trusted me with this subject and gracious she asked me to be a guest blogger.

As challenging as it is for people to understand what endometriosis is, it's even more challenging for them to comprehend infertility. Many people consider infertility to be a lifestyle choice. The comments can be cruel: it's natural selection, you weren't meant to have kids, etc. However, infertility is a disease. It is a disease of the reproductive system and can impact both men and women. When you look at the underlying causes of infertility you can pinpoint the disease (except for unexplained infertility which is about 15 percent of all infertility cases). Medical reasons for infertility include, but are not limited to, endometriosis, Polycystic Ovary Syndrome (PCOS), male Varicocele, etc. Male factor accounts for about 30-35 percent of infertility and 55 percent is female or combo male/female factor. No matter the reason, infertility is stressful, sad, private, and lonely.

When a woman is diagnosed with cancer or heart disease she talks freely about her diagnosis and receives compassion from friends, family, co-workers, etc. People understand cancer and heart disease. These are also deadly diseases that if not treated can kill you. This is not the case with infertility. If you are diagnosed with infertility it is very unlikely that you face death. However, you might feel dead inside. I did. I wanted a child more than I wanted to live another day without one. Some of you can probably relate. Some of you might think that I was a little dramatic. Each of us handles our crises differently and this should be okay.

What do you do, though, if you want a baby yet you're faced with female and/or male factor infertility? My advice is to start looking for answers to your questions. You may not even know what your questions are, that is okay too. There are a ton of resources for you. Here is a short list:

InterNational Council on Infertility Information Dissemination, Inc. (INCIID)

RESOLVE: The National Infertility Association

American Fertility Association

Fertility LifeLines

Fertility Today Magazine: "America's Leading Expert in Reproductive Medicine"

About.com: A source for infertility information and discussion forums

My Fertility Plan: Not sure where to start? Contact My Fertility Plan to save money and time before you start your journey

Infertility is complicated by the stigma faced by both men and women. For a man, sperm production can be associated with his manliness. Same logic can be true for women and being pregnant/having a baby. Other issues are the political and/or religious argument against fertility treatments. As you may know the Vatican recently voiced their opposition to assisted reproduction, especially IVF. If you are Catholic this may put you in an awkward place in your family building journey. And I haven't even explored the cost of family building, whether its fertility treatments or adoption, it's expensive and more often than not there's no health insurance coverage...

To end this post I'm offering a few tricks that I learned along the way. Some of these I didn't practice and some I did.

1. Infertility is a couple's disease. It doesn't just impact you, even if you're the one with the medical issue. You are both in this together. My husband and I didn't take this approach initially and our relationship suffered because of it.

2. Communicate often with your partner. This is something my husband and I didn't do well. We made a lot of assumptions about what the other person wanted, and we were often wrong. It created a lot of conflict and almost led to divorce. Be open and honest. It will serve your relationship better in the long run.

3. Tell your friends and family members what you are going through. Often women will tell me this backfires on them. They are often disappointed with the lack of support they receive once they tell all. My logic is that when you let them know you learn who can support you and who cannot. It's always good to find the shoulder you can lean on as it may not be the one you were expecting it to be. I expected my friends who had gone through infertility to be my greatest supporters; instead it ended up being my friends with children. My infertile friends wanted to move on and forget once they got pregnant. They were no help at all, who knew? When those you love are not supportive I think it's because they don't understand the disease or how it makes you feel. Use this as an opportunity to educate them. Point them to websites or blogs they can read. They'll come around eventually and if they don't there is a lesson to be learned here too.

4. Do your own research. Before and after your doctor appointments educate yourself on the terminology, options, etc. My husband and I did this when we got our first set of results and it helped prepare us for discussions with the Reproductive Endocrinologist. It was nice to be able to talk with the doctor and understand the terms he used. It was comforting to know that the information he provided was similar to what we had read.

5. Ask a lot of questions. Whether you seek referrals from others who have been there, done that or ask your doctors/nurses question, make sure every question you have gets answered.

To the readers of Jeanne's blog, I'm offering you one of my two ebooks, free, which are generally only available to subscribers of my blog.

Send Kelly an email at info [at] twinpeas [dot] com and she’ll send you a copy.

Choose from:

A. 30 Questions to Ask Your Doctor about Infertility and Treatments

B. Managing Your Relationships and Your Sanity During Infertility


Best of luck to you on your journey to build your family.

Kelly Damron
Author of "Tiny Toes: A Couple's Journey Through Infertility, Prematurity, and Depression"
Blog: www.Twinpeas.com/wordpress.

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

1/01/2009

Happy New Year! Here's Wishing You The Best Of Health!







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

9/19/2008

Endometriosis Blog: Spotlight On The Interstitial Cystitis Association!!

Since so many readers of this blog have interstitial cystitis as well as endometriosis and since the illnesses have been correlated in studies, I would like to spend some time today on interstitial cystitis.

Founded in 1984, the Interstitial Cystitis Association (ICA) is the authoritative source of interstitial cystitis (IC) information in the United States.

The ICA:

+ Provides the most comprehensive & up-to-date information on IC

+ Offers IC patients, their families, and friends support

+ Educates the medical community and the public about IC

+ Represents patients and advocates for research funding

+ Provides pilot research funding to find effective treatments and a cure for IC


Since I'm on the email list for The Interstitial Cystitis Association, I receive wonderful updates on interstitial cystitis on a regular basis. The one I just received, however, is special enough to warrant some extra attention. It is full of information on what's happening in the interstitial cystitis world.

I'll include the link to it in a moment but first I'd like to explain a bit about my personal experience as an interstitial cystitis patient. As an interstitial cystitis patient... I know firsthand the unbearable pain it can cause! I also know that it's often misdiagnosed or under-diagnosed. (It took 12 years and 3 urologists telling me I didn't have interstitial cystitis for me to finally find a pelvic pain specialist who said, "you definitely do have IC"!)

The interstitial cystitis treatment regimen he has me use isn't always super-convenient but it is well worth the effort because it really reduces the severity of my symptoms significantly!! (In addition to taking an oral prescription that reduces my symptoms, I self-catheterize at home to administer what's called a 'bladder instillation'. Essentially, the medications (there are two of them) that are instilled into my bladder (temporarily) are helpful for me for controlling my symptoms (in combination with the oral medication therapy).

Annual Report of The International Cystitis Association: A Year of Transformation

http://www.ichelp.org/Portals/0/AnnualReports/2007AnnualReport.pdf

In this report, you'll hear that there has been a "changing of the guard" at ICA:

Vicki Ratner stepped down and the ICA welcomed a new Executive Director. After almost 25 years as the ICA’s guiding force, Vicki Ratner, MD, stepped down from her positions as ICA President and Chief Medical Officer. The ICA is profoundly grateful to Dr. Ratner for her tireless efforts on behalf of IC patients worldwide. Her work has had direct impact on the quality of life for all people with interstitial cystitis.

Barbara Gordon, MBA, RD, is the new ICA Executive Director. Drawing upon a wide range of healthcare and managerial experience, as well as a deep understanding of the special challenges confronting people who suffer from chronic diseases, Gordon fully embraces the goal of the ICA to give hope to countless interstitial cystitis patients around the world.


Several themes emerged in the International Cystitis Association's report.

These are some of the words they used regarding the past year for ICA: transforming, embracing, advocating, increasing awareness, empowering, appreciating, ensuring...

Research programs---

Some key points made in the research report cited in the above link include:

+ Research confirmed that IC doesn't travel alone, and that patients often have other problems such as irritable bowel syndrome and fibromyalgia.

+ Researchers explored the cost of IC and found it to be much higher than that of many other chronic illnesses such as peripheral neuropathy, low back pain, fibromyalgia, or rheumatoid arthritis.

+ Many innovative treatments for IC were further developed this year. Oral medications, bladder instillations, external and internal stimulator devices, and hands-on interventions advanced along the pipeline, all with the potential to provide better IC symptom relief.

Personal Impact:

Researchers from the National Opinion Research Center (NORC) at the University of Chicago presented the first results from the NORC/ICA METRIC epidemiology survey at the American Public Health Association’s 135th Annual Meeting and Exposition in Washington, DC.

The study was based on nearly 3,000 responses to a 28-page survey that gathered information on IC patients’ life experience.

The study found that:

40 percent of respondents reported low self-esteem as a result of IC

42 percent believed that IC caused them to “miss out on life”

31 percent admitted that IC led them to have suicidal thoughts

22 percent noted that IC has caused them to lose close, meaningful relationships

66 percent said IC had negatively affected intimacy

71 percent noted pain during sexual activity

Patients Have Record Impact on Capitol Hill:

“Because of the efforts of IC patients, policymakers on Capitol Hill are recognizing and more aggressively addressing the challenges chronic pain patients face from a fractured healthcare system that limits access to the multimodal therapies patients need and from the Social Security Administration’s bureaucracy in granting disability benefits. Our advocates have also helped legislators recognize the need to influence the direction of federal research so that NIH is investing in future therapies and cures for these intractable conditions,” said Government Affairs Consultant Libby Mullin.

Here is the contact information for the ICA:

Interstitial Cystitis Association
110 North Washington Street
Rockville, MD 20850
800-HELP ICA (800-435-7422)
www.ichelp.org


Thank goodness for all of the great work this organization does. It helps so many people!

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

9/08/2008

Endometriosis Blog: ***TODAY*** Kicks Off National Invisible Chronic Illness Awareness Week 2008!!

Today kicks off National Invisible Chronic Illness Awareness Week 2008!

I dialed in today and chatted with Christine Miserandino and Lisa Copen. What a pleasure it was to talk with these two women... who had some great insights and thought-provoking comments!

Christine (aka "The Spoon Lady") wrote "The Spoon Theory". See it on her website:

http://www.butyoudontlooksick.com/

Lisa is the Executive Director of Rest Ministries, Inc. It's my understanding from what I've read on http://www.invisibleillness.com that she is responsible for creating National Invisible Chronic Illness Week.

I dialed in (see the http://www.invisibleillness.com site for how to dial into the seminars). They took my call and we discussed numerous things. We kept things very positive... to the extent that we actually discussed ways in which illnesses can be a blessing and can help us to be more focused, appreciate the little things more, and "take things in" in a way that we might not otherwise!

Please see yesterday's related post:

Sunday, September 7, 2008 Endometriosis Blog: Tomorrow is DAY ONE of National Invisible Chronic Illness Awareness Week 2008!!

Yesterday's post includes an excellent video clip in the post that I HIGHLY recommend!!

There is just so much going on in conjunction with this chronic illness awareness week that the best thing I can suggest is to just visit the website below and explore it yourself.

***** It is just loaded with information! *****

http://www.invisibleillness.com


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

9/03/2008

Endometriosis Blog: "Almost Rosey" -- The Healing & Supportive Power Of Music And Other Relaxation Techniques (Video Clip Included)

I thought it was time to lighten things up a bit. Sometimes taking a break from information-gathering, doctor appointments, and stress can help us cope better with endometriosis & other chronic illnesses.


I'd like to start by sharing a gorgeous photo I found awhile back:



Photo used with permission from Mimbrava - www.Flickr.com


This red rose photo ties together nicely with a post I've been wanting to write for awhile now. As many of you are already aware from what I have written previously I am a huge fan of Tori Amos, the musician.

It just so happens Tori has endometriosis. So I'm using that as my excuse to write a post featuring some lyrics from her song: 'Almost Rosey' (from the American Doll Posse CD).

Before I get into any lyrics or my interpretation of them and what they do to inspire me and to give me strength during the especially tough times, I just want to lay the foundation for WHY I'm writing about this here on the blog... (other than my love of Tori Amos' music).

Over 7 years of facilitating a local endometriosis support group, I have noticed that MANY of our support group members share a common thread. For some it has to do with upbringing. For some it's a personal philosophy. For others, it's the only way they know how to cope with this challenging illness.

The common thread I've noticed for most endometriosis patients is that they often:

  • Put others first before themselves

  • Forget to practice self-care on a frequent enough basis to maintain their health (or progress to a greater state of wellness)

  • Often they "run themselves totally ragged"


  • Let me be clear that I don't sit in judgment of anyone (!!) and I know how very difficult it is to balance home/personal life, work life (for those still well enough to pursue a career outside the home or those who manage to work from home), social life/obligations, chronic illness(es) and the many other commitments that take up our precious time nowadays. There never seem to be enough hours in the day!

    An endometriosis patient may be:

  • employed in the traditional workforce

  • disabled

  • unemployed

  • a stay-at-home-mom (SAHM)

  • a work-at-home-mom (WAHM)... [I know -- all moms work at home. By WAHM, I'm referring to women who work in the home via telecommuting, running their own businesses, etc...]


  • I have observed that ALL women nowadays (that I know) are feeling the pressure of many demands on their time and this typically just becomes much *more* challenging for the chronically ill.

    OK... back to some of the music that gets me through some of my roughest days! I should point out that the music that works for me may not be most effective for you for coping with illness, stress and/or anxiety. The important thing is that most of us have SOME sort of music we find relaxing, inspirational, supportive, or even cheerful. Sometimes the lyrics really strike us and provide extra comfort. Sometimes it's the melody, the beat, or maybe an outstanding vocalist. Many times it's all of the above.

    OK. It's time for me to list the lyrics for "Almost Rosey" and explain what they mean to me personally. They may certainly mean different things to different people but I'll talk about how the lyrics strike me. Obviously this is just one interpretation.

    *Let me give just a bit more background on why I'm including lyrics for this particular song.*

    Many women I know (from my local endometriosis support group, healthy friends & relatives, former co-workers, blogger friends, etc.), myself included, have times when they really push their limits physically, mentally, or both! Self-care is key. A support network of some kind is key.

    You may have heard phrases like "grin and bear it" or "put on your happy face" or "be strong/don't let 'them' know they've gotten to you".

    While there are certainly times in life when we all need to do things we don't want to do, to even do things we're concerned may cause injury or exacerbation of existing illnesses, and to do things that are simply necessary for basic functioning... there are definitely other times when it's in our best interest (and/or that of our loved ones... whether they know it or not!) NOT to push too hard and NOT to overwork! Knowing when to back off and when to push ahead is a tricky balancing act. Taking pains NOT to overdo can prevent suffering & sometimes even permanent pain afterwards, etc.)

    Many women have a REALLY tough time slowing down, pacing themselves, and saving precious energy for the things that REALLY matter!

    OK. Here's where this song is one of my favorites to play when I need a pick-me-up.

    Here is a video clip of an amazing live rendition of this beautiful song:





    Below are the lyrics to "Almost Rosey". I have bolded portions I find particularly helpful to me for insights into how people (women and men) sometimes "put on a happy mask", isolate themselves from support when they need it most, etc. My comments are in italics.

    I should note that simply reading the lyrics off the page may sound anything but "rosey" or cheerful. However, knowing Tori's body of work for over 15 years, reading between the lines of the lyrics, knowing she is about as far from a "phony" or "fake" person as can be, and hearing the beautiful melody and soothing sound of the music on this song softens it immensely. Tori is a complex person and her lyrics can be deceiving. For example, her talk of putting rose colored glasses on to cope with things is NOT, in my opinion, implying that one should stick his/her head in the sand!! Quite the opposite... Tori bravely faces things head on! My comments on the lyrics will be in italics next to the lyrics I've bolded in the song...

    +++

    » 'Almost Rosey' Lyrics

    [This Section features Lyrics of the Song 'Almost Rosey' from the Album American Doll Posse]:

    Just a minute of your time
    Yes I've been known to delude myself
    So let me put those rose colored glasses to the test
    (I believe this is her way of saying let's cope with these problems rather than avoiding them).

    Now is this real enough for you
    'cause blondes here don't jump out of cakes
    If that never impressed you much
    Come board this lunatic express

    Just why do they say
    Have a nice day anyway
    We both know they wouldn't mind
    If I just curled up and died
    Let's not give that one a try
    (I think this section is Tori's way of observing how fake people can be when they exchange pleasantries they don't mean, when they act insincerely, and when they generally disregard -too often - others' well-being).

    Chin up put on a pair of these roseys
    Raise those blinds
    Chin up a happy mask was never
    Your best disguise
    Chin up put on a pair of these roseys
    In no time you will feel almost fine
    (I believe Tori is offering coping skills to either herself or someone else. She seems to be trying to fight the urge to isolate and "close the blinds". She recognizes that stuffing emotions and putting on a "happy mask' is not healthy. She wants things to start looking up and believes things WILL get better).

    Almost rosey

    Now some girls here will huddle with
    No not footballers that are rich
    But will confide in small white sticks
    He bats as The Virginian Slim

    Then I tried once to comply
    With an authority that would
    Subsidize my wild side
    But at this altar was sacrificed

    Yes you can laugh a femme fatale
    In a bride's dress now married to
    The effortlessness of the cracks
    That lie now in between the facts
    (Here again I believe Tori is speaking out against dishonesty in any form... including being phony/fake or insincere).

    Now about when violet died
    The cause still unidentified
    She thought her love would be enough
    But you can't seduce seduction

    Her tentacles of endless want
    Reach through my corridors
    And tempt me to taste of her power
    I sober with the witching hour

    And when I hear of one more bomb
    Yes we have all been robbed of song
    And nightingales who throw their arms up
    When is enough enough?
    (To me this passage is pro-peace, for saving the Earth from irreparable harm caused by war and environmental issues. Obviously birds don't have arms but I think the point is clear that she's concerned about the condition the Earth is in and wants very much to improve it).

    ---
    [ Almost Rosey Lyrics @ http://www.toriamoslyrics.org/ ]

    Tori Amos
    Almost Rosey lyrics are copyright by it's rightful owner. This Tori Amos Lyrics
    site (http://www.toriamoslyrics.org/almost-rosey-lyrics-tori-amos.php)
    in no way takes copyright or claims the lyrics belong to us.

    © 2008 Tori Amos Lyrics.org, All rights
    reserved.
    ---

    See my post: Sunday, June 15, 2008 - What is My Connection to Tori Amos??

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

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