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January, 2013

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Blogging for Endometriosis Awareness 2013

Endometriosis Awareness Month is right around the corner! A group of bloggers and myself would love for you to join in with us to help spread education and awareness regarding endometriosis! With 5.5 million women in North America alone being affected, there is a good chance that you know someone battling this often unrelenting disease.

Blogging-For-Endo

To kick the month off, March 1st will be Yellow Shirt Day so sport your yellow loud & proud and we will kick off the month with a link of you lovely readers sporting your yellow! We would love to see social media turn yellow!

The Blogging for Endometriosis Awareness campaign runs throughout the month of March and provides an opportunity to share your journey with others and offer and receive some support and encouragement for fellow endo-sisters! Each week there is a different topic that discusses the various ways endometriosis impacts our lives. We all know that the physical aspects of the disease is just on facet of life and it impacts our lives emotionally, socially, and spiritually.

Here is a schedule of the topics:

Week of March 4th: Physical impact that endometriosis has had on your life
Week of March 11th: Mental impact that endo has had on your life.
Week of March 18th: Social impact that endo has had on your life. 
Week of March 25th: Your favorite things/tips/coping tools  that have helped you stay encouraged in spite of illness (suggestions: endo survival kit, advice for newly diagnosed, top 10 most annoying things you can say to someone with endo, etc)

You can post any time during the week and link up your posts here but don’t feel trapped with the list of topics. If you feel lead to share another post related to endometriosis awareness, please do so! This list of topics is just a general guideline! I hope having a list of topics provides enough inspiration to get writing but still be broad enough to allow for your creativity to let loose!

Another idea for the awareness campaign is to have friends and family members write guest posts for your blog so that we can include the stories and experiences of caregivers and loved ones! Chronic illness is obviously very difficult on the patient but also has a big impact on caregivers and loved ones and sometimes their voice gets lost. When I stop and put myself in my husband’s shoes I cannot imagine having to watch your spouse go into surgery not only once but often multiple times as well as having to watch them have pain and not being able to do anything about it. My husband is type 1 diabetic and it shatters my heart to watch when he has a bad day so it really causes me to step back and think about the hurt and the frustration he must feel about my illnesses.

Some possible topics for guest posts include:

What impact has the disease had on your life?
What is it like watching your friend/loved one suffer?
How do you offer encouragement?
If you could give advice to a friend or family member who is just
beginning the road of supporting a friend or family member with endo, what would it be?
If you have been the main caregiver for someone suffering from endo, how do you make sure to care for yourself too so you stay health?
If you could understand more about endometriosis, what would you want to know?

Plans are in the works for at least one (hopefully two!) twitter chats as well as a couple giveaways! If you are a business owner or know someone who might be interested in donating for giveaways throughout the Blogging for Endometriosis Awareness 2013 campaign, please send me an email! All giveaway sponsors will be given free ad space throughout the duration of the campaign!

chronic illness

Advice for the Newly Diagnosed

Life With Chronic Illness

I remember how it felt sitting in the doctors office after my first surgery as my doctor explained my newly discovered diagnosis of endometriosis. I was a scared 22 year old and I had no idea what to do next. No one in my family had chronic illness much less endometriosis so it was definitely a shock. I sat in an empty music classroom after school (I was in the middle of my student teaching semester) and pulled up Google and began reading anything I could get my hands on as I tried to figure out what my new normal would look like. Thankfully I discovered an online support group for young women who had been diagnosed with endometriosis called GirlTalk with the Endo Research Center. The support, advice, and encouragement that these women provided was an essential part of my journey. I would later become the program director of this group and I can only hope that I was able to provide some support and encouragement to another young lady who was trying to understand her new diagnosis just as I had been encouraged and supported years before.

Nine years and four additional diagnoses later, I continue to be thankful for the awesomeness that is the online community both here at A New Kind of Normal and elsewhere on the inter webs so I wanted to share some bits of advice given by readers for those who are newly diagnosed with chronic illness:

Holly – Don’t expect to right all the wrongs (from the illness) in a week. Give yourself a break and work on your new life a day at a time.

Catherine – No one knows the pain you are feeling in, don’t expect understanding and don’t waste your time trying to explain it to people. What you are feeling is real, but it may not have an official name. Don’t ever give up or in but do what feels right for you, at that time. Illness changes and symptoms change so adapting is key. Sorry this is more than one thing!

Debbie – Have a good support person or friends. If you have that, then no matter how bad things may get, you will never be alone.

Kristin – As soon as you get used to a routine (meds , treatments and comfort or non comfort ) it will change. As quickly as you accept your disease , it will always throw u for a loop in one way or another. The best advice is the support of fellow “Disease’rs and a diary of symptoms due to u will forget….. Stay on top of it –  document and take pics for proof.

Cheryl – Listen to your body. allow it the rest/sleep it needs. accept your limitiations…if writing out once check and cooking one meal is all you’ve got it you, then it’s all you’ve got.

Michelle – If you have a spouse drag them with you to appt, classes. Make sure they read articles and learn about what they can do to help you and what your limitations are. I didn’t and my spouse walked out after 20 years.

Kathleen – Do the best you can depending on how you feel for that day. Take one day at a time. Ask for help from your support person and tell them specifially what you need from them. They can’t read your mind. Probably the toughest thing is accepting help from someone and realizing you need it and can’t do for yourself. Keep a journal and a log of all doctors visits with any questions you think of prior to the visit and write the answers down. Also good to keep a running list of medications and dates of changes in doses and in that journal write about current symptoms while on what drugs as it will be helpful down the road. Have your spouse or someone go with you to doctors appointments in the early stages because you won’t remember half of what was said and two heads are better than one. If the doctor will allow it record the visit!

Renee – Acceptance is not defeat, but the key to understanding. Rest is not weakness, but the strength to know your limitations.

Angela – It is not your fault!

Karen – Respect your limitations and learn to live within them. In the long run you will have more times of feeling better.

Kim – There will be those who do not understand your illness. It is hard to understand something that they have never been through or that is invisable to them. Don’t let what others think, say, or do make you feel bad about your situation. Respect your limitations.

Sheena – Listen to your body it will tell you what it needs if other people dont understand thats there fault not yours as others have said respect your limitations

 

What piece of advice would you offer someone who is newly diagnosed with a chronic illness?

chronic illness

Recent Test Results

I finally received the latest round of test results. I had the blood work done two weeks ago and one set of results last week and the second set came in today.

My endo doctor was the most concerned about my thyroid. I have always tested as borderline but we went ahead and treated in hopes that maybe it would take away some of the issues I was having. Because of the myriad of issues, I face we were never quite sure which symptoms tied to which illness. But when I rebelled and stopped my medications, she was concerned primarily about my thyroid function without medication.

In case you didn’t know, symptoms of hypothyroidism (or low thyroid function) include fatigue, increased insensitivity to cold, constipation, dry skin, unexplained weight gain, puffy face, hoarseness, muscle weakness, elevated blood cholesterol level, muscle aches, tenderness, and weakness, pain, stiffness, and swelling in joints, heavier than normal or irregular menstrual periods, thinning hair, slower heart rate, depression, and impaired memory (information from mayoclinic.com). There is also a possibly a connection between low thyroid function and infertility (which is what initially pushed us to start treatment when my tests first came back borderline). Obviously, your thyroid is an important part of your body and if you have some of the same symptoms that are either unexplained or not responding to other treatments, have your doctor check your thyroid function.

When the results came in, they showed that my thyroid function was not normal and treatment was definitely necessary. I do not have the numbers off-hand but I have definitely moved from the borderline category to the treat category. I mentioned in my last What I Wore Wednesday post that I was having issues wearing my contacts because my eyes were drying out so bad and it appears to be related to my impaired thyroid. As I have started back my medication, I can finally wear my contacts again! Woo-hoo! I am hoping maybe my joints and muscles will loosen up a bit too as treatment progresses!

As far as everything else, NORMAL. Sigh. Why does it have to be frustrating to get normal results? Wouldn’t most people jump for joy? Believe me, I am not asking for an additional illness as I’ve got plenty thankyouverymuch but sometimes with chronic illness you are hoping for some sort of answers even if its in the form of a new diagnosis. I feel like we have so many unexplained issues and have had so little results with treatments recently that you hold out hope for any bit of information that may hold an answer such as if my SED rate or ANA came back abnormal, it would indicate something autoimmune going on which could open up the doors for other possible treatments. But, alas, all normal. The good news is that my liver function is back to normal (it has gotten really wonky prior to my bowel obstruction) so that I can try taking an anti-inflammatory to see if it helps my joint pain. I had success this past spring but then my liver count shot up so we had to stop so we’re keeping fingers crossed! My rheum is concerned about how much of a role endometriosis is playing in the current level of pain but of course there is no real way to know. We are going to hope that the antiflammatory helps with some of the fibromyalgia symptoms and go from there.

My next step is setting up a follow-up appointment with my endo doctor to discuss disability options. I’m not sure if the results make me more or less anxious for the next step…

disclaimer

Information posted here should not be considered medical advice. It is not intended to replace consultation with physicians or other healthcare providers. A New Kind of Normal covers my personal experience and because every person's experience is unique, it should not be relied upon as a substitute for professional healthcare.

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