Invisible Illness Awareness Week–Series of Articles on Endometriosis

Here is a post from guest blogger with excellent information and links about endometriosis!

She started a blog to help her in her journey through grief, infertility, fibromyalgia, endometriosis, migraines, PTSD, depression and, hopefully, to help others in similar struggles. She uses the name “snowdroplets” because she wants to convey both her sadness and hope. Snowdrop flowers are a symbol of hope. Some will bloom in winter. Droplets…as a symbol of tears. Also as cleansing water and the life-giving properties of rain. Put together… snowdroplets.

Please click on “snowdroplets” below to see her entire blog.

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As we kick off Invisible Illness Awareness Week, I was so happy to see The Guardian publish a whole series of articles on endometriosis today!! Endo is part of my #invisiblefight. It made me so very happy to see this awful illness receive this kind of attention and to see the discussions that these articles kicked off in the comments section. I hope this will help us to get more funds for much-needed research. Here are a few of the articles:

1) Endometriosis: the hidden suffering of millions of women revealed

Often dismissed as ‘women’s troubles’, endometriosis affects one woman in 10 of reproductive age, yet a lack of research and funding means sufferers can live in severe pain, unable to work or socialise…

http://www.theguardian.com/society/2015/sep/28/endometriosis-hidden-suffering-millions-women

2) Endometriosis: 20 things every woman (and every doctor) should know

For example: you do not have this disease because you failed to breed in your early 20s. And pregnancy is not a cure!

http://www.theguardian.com/society/2015/sep/28/endometriosis-20-things-every-woman-and-every-doctor-should-know

3) ‘I’m not a hypochondriac. I have a disease. All these things that are wrong with me are real, they are endometriosis’

http://www.theguardian.com/society/2015/sep/28/im-not-a-hypochondriac-i-have-a-disease-all-these-things-that-are-wrong-with-me-are-real-they-are-endometriosis

4) ‘The pain is paralyzing’: 30 women describe living with endometriosis

http://www.theguardian.com/society/ng-interactive/2015/sep/27/the-pain-is-paralysing-30-women-describe-living-with-endometriosis

5) Endometriosis: if your doctor isn’t taking you seriously, it’s time to find a new one

http://www.theguardian.com/commentisfree/2015/sep/29/if-your-doctor-isnt-taking-your-endometriosis-seriously-its-time-to-find-a-new-one

Thank you Guardian, for raising the profile of this disease!

Thank you, snowdroplets, for writing this blog post!

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Invisible Illness Awareness Week is September 28 – October 4

This post is from the Rest Ministries Invisible Illness Week website (http://invisibleillnessweek.com/)

What is your invisible fight?

Invisible Illness Awareness Week is September 28 – October 4 and we are creating a big buzz in social media, spurring on awareness, understanding, and dispelling myths and misconceptions about living with illness.

We live in a culture that understands acute sickness. Tell a friend you have strep throat and your friend has an idea about what your next three days will entail. Friends grasp your need to rest, to eat a certain way, that you may or may not be online, the amount of medication you may take, and that you likely won’t be getting together for an event or working.

Chronic illness, however, is confusing to most people.

Illnesses that are indefinite (chronic) have a growing list of symptoms that differ between those with the same illness–and overlap with those who have different illnesses. There are no rules or guidelines about what you can and can’t do or should or shouldn’t do.

How can a person with illness barely be able to get out of bed one day and running errands for two hours the next day? If the medications are working, why haven’t you returned to your favorite activities? Are you depressed, and that is why you keep going back to the doctors over and over?

All of these are common assumptions from one who has not experienced a chronic illness.

Invisible Illness Awareness Week is trying to change that with a 2015 “My Invisible Fight Photo Campaign”

What are the photos of?

This is the fun part! Take photos of anything that is an #invisiblefight for you.

What is a fight for you that few people would even notice or understand?

Some ideas of invisible fight?

  • A staircase (or even one stair!)
  • A restaurant menu
  • The shower
  • The scale
  • A jar of spaghetti sauce (cannot open it!)
  • A pair of shoes
  • Your bed
  • A certain outfit or item of clothing
  • A blow dryer (that is heavy to lift)
  • A heavy door
  • A car’s steering wheel
  • Your purse (too heavy to carry?)

It doesn’t have to signify something you cannot do. It can represent something that is just an extra challenge for you, something that makes you sigh with frustration, or perhaps hold your breath with a bit of anxiety.

You can take as many photos as you want and share them all over the place between now and October 4th.

If you can, add #MyInvisibleFight to the actual photo.

What hashtags to use

The specific hashtag for this event is #MyInvisibleFight.

Additional hashtags you can use that are for Invisible Illness Awareness Week 2015 are: #invisibleillness #invisiblefight and #iiwk15.

Here is one of the photos I’ve posted:

A pic of how I usually look to others, and how I look at home. It was hard to post the 2nd pic, but it's important to make people see the "visible" part of invisible illness. #myinvisiblefight #iiwk #invisibleillness

A pic of how I usually look to others, and how I look at home. It was hard to post the 2nd pic, but it’s important to make people see the “visible” part of invisible illness. #myinvisiblefight #iiwk #invisibleillness

Lisa Copen established Invisible Illness Awareness Week in 2002 and she is excited to see how you touch lives this year in 2015!

My #InvisibleFight

“You’re looking pretty good today. How do you feel?” The response I often want to give is, “I feel like crap, but thanks for asking.” However I’ve come to realize that isn’t helpful to me or the person asking. It just shuts down communication, and I feel worse. I should be grateful that someone asked how I feel, even if it is just in passing.

If someone doesn’t suffer with an invisible chronic illness, it’s impossible for them to understand or comprehend the pain, struggle, and suffering we go through every day. Yet, we want them to understand, don’t we? Except for a few close friends and my husband who have walked alongside me with my invisible illnesses, most people don’t understand the numerous doctors appointments, pills and supplements, and traveling great distances for consults, second opinions, and skilled surgeons.

One of the most effective ways I do my #invisiblefight for the invisible illnesses I and my family have is through social media. It started simply by someone recommending to me a website called Rest Ministries (http://restministries.org), a website that ministers to the chronically ill. It has daily devotionals that speak to my struggles, informative articles, a chat room called “The Sunroom”, and specific groups that I joined to discuss specific illnesses or types of support. Eventually, I submitted several devotionals and articles to Lisa Copen, the founder, and she graciously accepted them for inclusion on the website. At Rest Ministries, I find great camaraderie, empathy, and understanding from fellow writers and others fighting invisible illnesses here.

The three invisible illnesses I have are ulcerative colitis, lyme disease, and endometriosis. Fortunately, my ulcerative colitis has been in remission most of the 33 years I’ve had it by taking daily oral medication. However, my two grown children both have Crohn’s disease, one diagnosed at age 8 and one at age 20, and they have had significant flares and changes in medications over the years. By God’s grace and advancements in research and medication options for Crohn’s patients, they are both in remission. My “go-to” website for information on these illnesses is the Crohn’s and Colitis Foundation of America (http://ccfa.org). This website has webinars with leading doctors and researchers in the field, a separate web area just for teens to talk with one another, the latest information on medications and treatment options, stories of those with Crohn’s or colitis who are making a difference, and many ways to get involved in supporting and promoting these diseases.

Due to the controversy over whether chronic lyme disease is a reality, I found it difficult at first to find reliable information, but through meeting hundreds of patients and being treated by two great Lyme Literate medical doctors (LLMDs), I have found reliable websites that offer names of LLMDs, effective treatment of lyme and its co-infections, and ways to advocate and support legislation for better research and testing. Just a few of those sites are ILADS Lyme Society (www.iliads.org), Lyme Disease Network (www.lyme.net), and the LDA–Lyme Disease Association (www.lymediseaseassociation.org).

Of the three invisible illnesses I have, finding current and reliable information on the internet, or anywhere else, for endometriosis has been the most difficult. It’s not considered a “big deal” in the hierarchy of chronic diseases–a few bad cramps, some severe bleeding occasionally, a few “minor” surgeries, and you should be up and running. If all else fails, most gynecological surgeons recommend a hysterectomy.

I’ve had endo for 27 years, had five laparoscopies, a hysterectomy, worked with a pelvic floor physical therapist, and tried numerous medications, and at age 59, still have pelvic pain. After my most recent laparoscopy in April 2015, I got serious about researching this disease and found that there are only a few surgeons in the U.S. who are endometriosis excision specialists. If you want to learn about endometriosis and find support from others who are experiencing debilitating symptoms, ask to join Nancy’s Nook Endometriosis Education & Discussion Group on Facebook. Two other great resources are the CEC–Center for Endometriosis Care (www.centerforendo.com) and the EFA–Endometriosis Foundation of America (www.endofound.org). Through these groups, I educated myself and am sending my medical records to three excision specialists with the hope of eradicating endo from my body for good.

Finding good resources of information from other people suffering from your same illness, discussion groups on Facebook, Twitter, or websites, or your own experience with good doctors can empower you and give you hope to keep up the #invisiblefight. And you can pass it on to others who are also fighting the #invisiblefight.

My ultimate weapon for my #invisiblefight is prayer and the strength that Jesus gives me when I don’t have the mental or physical strength to function. I know without a shadow of a doubt that God hears my cries when I lie awake at night wanting to sleep, but can’t. He knows my suffering because He suffered great physical pain, too. When no one else understands, He will never leave me nor forsake me. When I am unsure about a medication or treatment plan laid out before me, He gives me His wisdom that is way beyond my finite mind. He collects all of my tears in a bottle and gives me peace in the midst of the #invisiblefight.

But the greatest gift Jesus gives me in the midst of my invisible illnesses is joy. Joy in spite of the circumstances. Joy in His creation if I open my eyes and ears. Joy that He never sleeps and is always awake for a good cry or conversation. Joy when He uses my struggle to comfort and come alongside another who has the same illness. Joy that I can pray for others when I can’t do anything else. Joy that He is my greatest warrior in my #invisiblefight.

 

March is National Endometriosis Awareness Month

neam3March includes Pi Day (3.14.15), St. Patrick’s Day (3.17.15), and the first day of spring (3.20.15). March is also Endometriosis Awareness Month and yellow is the color for endometriosis awareness. Wear yellow or a yellow ribbon during the month of March to spread awareness of this disease that can be chronic and devastating to many women’s lives.

Today I came across one of the best written and concise articles on endometriosis I’ve ever read. It’s informative and accurate and explains treatment options, support, and resources. The author nailed it!

Please take five minutes to check out this link if you or someone you know has endometriosis.

Physical Therapy for Endometiosis and Pelvic Pain?

Pelvic pain from endometriosis or other pelvic issues? Read this brief article about pelvic health physical therapy. It can be an option to more surgery. There is a PT in my area who does this, and she’s awesome! Although she was unable to give me long-term relief until I have more surgery, I will definitely be going back to her once that occurs.

“Five things that pelvic health physical therapy can do to improve your endometriosis-related pain”

There are more and more women who are being trained to be pelvic health physical therapists. Choose your favorite search engine and search for “pelvic health physical therapist” or pelvic floor physical therapist.”

Gratefulness in the Midst of the Battle

Ecstatic! Amazed! Grateful! I feel all of these and more about my right hip replacement I had 3 months ago. I’ve been back to work full-time since early July, and am tolerating that very well. Each day I gain strength and flexibility in my hip and leg, and I marvel at the skill of the surgeon and the way God made our bodies to heal!

Although there were days that were difficult, I am grateful to God for many of you who prayed, sent cards, made meals, drove me to appointments and physical therapy. I’m especially grateful for my servant husband, who faithfully filled my ice machine every night to reduce the swelling in my leg, who assisted me when I was learning to walk with a walker, then a cane, then no support, and who didn’t expect me to make meals once I was healthier and started back to work. We ate dinners from Chipotle, Chili’s, Moe’s, and some of our other favorite haunts more than we cooked…and that is OK:-)

I’m also grateful to my physical therapist, Randy, from Commonwealth Orthopaedic Associates Physical Therapy at Body Zone Sports & Wellness Center. He has rehabilitated just about every major part of my body over the last 12 years with skill, encouragement, and a lot of laughs.

On the disappointing news front, my Lyme disease is still active, and my pain from endometriosis is beginning to rear its ugly head again. And yes, that’s after a hysterectomy and a subsequent laparoscopy to remove endo after the hysterectomy.

Regarding the Lyme disease, my doctor thought I might be in remission, but when the blood test came back, it showed I still had active disease. I am also beginning to have some symptoms of a co-infection, Babesia. So I will be back at the Lyme doctor in September. In the meantime, I’ll take oral antibiotics to continue to fight the Lyme.

And regarding the endometriosis, apparently what I’m experiencing isn’t all that uncommon. Many women believe that a hysterectomy is a cure for endometriosis, but actually, it just gives doctors more treatment options. However, many of these treatment options don’t work.

An online article by The Cleveland Clinic states, “Whether endometriosis will recur after surgery depends on how severe the disease was at the time of surgery and how completely the surgery removed your lesions. Lesions that appear after surgery may be new or pre-existing. For this reason, it may be difficult for your doctor to tell whether your disease has come back or is progressing. The most recent studies have shown that endometriosis recurs at a rate of 20 to 40 percent within five years following conservative surgery. Um hmm….you read that correctly…..20 to 40 percent.

About 5 million American women have endometriosis. Endometriosis can occur in teenagers and adult women of all ages, but most typically it occurs in women ages 25 – 40. Mind originally occurred in 1988 when I was 33. I had about 4 laparoscopies over a period of 20 years before I had the hysterectomy and subsequent laparoscopy last August in 2013.

Implants can form in many areas, most commonly in the following locations in the pelvis: ovaries, fallopian tubes, uterine surface, cul-de-sac (an area between the uterus and rectum), bowel, bladder, rectum, and the peritoneum (the smooth surface lining that covers the entire wall of the abdomen and folds over inner organs in the pelvic area). Rarely, remote sites of endometriosis may include the spinal column, nose, lungs, pelvic lymph nodes, the forearm, and the thigh.

On my last visit to my gynecologist, whom I’ve had for 31 years, he said my exam was better than previous ones, but I was tender in the spots where he found endometriosis before. So we decided to wait until I’m at least 6 months post-op from my hip replacement to give the nerves, muscles, and tendons time to heal. After that, we will decide how to address the endometrial pain going forward. He says it will probably be another laparoscopy.

So, even though I sometimes feel like just pulling the covers over my head and sleeping through life, God has shown me that I need to be grateful for life, whatever state I’m in. If I wake up in the morning, can put my feet on the ground and move forward, it’s a blessed day. I just ask God for His strength and wisdom to give me a good attitude and the physical and mental ability to do the tasks for each day.

So stay tuned for Lyme and endometriosis updates…and keep those prayers coming!