Thank you for nominating me….

Liebster

Today,  when I read my emails I was pleasantly surprised to see that I was nominated for a Liebster award, a WordPress family award, and a Versatile blogger award.  These awards were given to me by  pastry chef Celeste from the Baking, Butter, & Happiness blog at http://bakingbutterhappiness.wordpress.com/welcome/

Thank you so much Celeste, for this honor, and for noticing my blog.  The wordpress community has provided alot of support for me, as I deal with my day to day issues.

I am relatively new at blogging and wish I was able to follow more blogs and write more, but the limits of my illness prevent that.  I get great joy from writing and hope that my insights as a woman living alone with a chronic condition can help others.

I hope you forgive me for copying and pasting the rules and pictures to my blog.  Please stay tuned for follow up posts for more about the 3 awards and for my nominees.

Thank you again,

Rose

Canary in a Coalmine

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A few months ago I stumbled across an article that was comparing a CFS diagnosis to being a Canary in a Coalmine.  Early coal mines did not have ventilation systems, so legend has it that miners would bring a caged canary into a new coalmine. Since canaries are especially sensitive to carbon monoxide and methane,  it made them ideal for detecting any dangerous gas build-ups.  As long as the canary kept singing, the miners knew their air supply was safe.  A dead canary signaled an immediate evacuation.

The article I was reading stated that CFS is an epidemic waiting to happen and that the people that came down with CFS, were early warning signals of a major epidemic waiting to hit the population.  Today the expression,  “living like a canary in a coal mine” refers to serving as a warning to others.   Us sufferers can be compared to a canary because just like the little bird had very little control over his fate, so do we.  Whether we are healthy or sick, we need to experience all that life has to offer.

Unfortunately as a person suffering a chronic illness, I have to find comforts in littler things.  I am not able to plan that big Alaskian cruise vacation that I have always dreamed about or returned to my favorite destination spa in Utah or plan to host an upcoming holiday dinner.  But I am able to spend an hour relaxing while getting a massage or attend a holiday gathering at my sister’s house.

This morning, I received a link about a new movie that needs funding.  There is a kickstarter campaign attempting to raise money to allow the film to go into production next year and  fund the time, equipment rental, and travel expenses needed.

Please take a look at this movie and at the very least promote it to spread awareness about the illness that so many people are still unaware of or worse, believe that it doesn’t exist.

http://www.canaryinacoalminefilm.com/#

 

 

Pain, Pain Go Away

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How do you get people to understand something that they can’t see?  I am struggling with that thought right now.  I have been in alot of pain this last week, whether it was back, head, neck, shoulders…just all encompassing pain.  I have been sitting in a dark room or wearing sunglasses in my apartment to minimize the light, yet I can’t make anyone understand how I feel.  Not even my doctor.

I had a doctors appointment yesterday with my rheumatologist, who believes Fibromyalgia is a real condition with real, life changing symptoms.  He listens to me when I have an appointment, yet offers no help because he tells me I have exhausted all the possibilities for treatment.  I have tried Lyrica, Savella, Cymbalta, Nuvigil.  I have tried it all and nothing makes a bit of a difference.  I have taken supplements, probiotics, eaten healthy green vegetables, drank immune shakes and D Ribose powder, but yet I feel no different.   I asked him when the magic pill will be discovered to take away my pain and he said, “Unfortunately, I don’t think it will happen in my lifetime”.   I replied, “Well then I hope you live to be a 100”.  He smiled slightly and replied “So does my wife”.  And off I went with my naproxsen and tramadol prescriptions.

I have wasted hundreds and hundreds of dollars, which I unfortunately don’t have to waste, in an attempt to do something that will make me feel better, but so far, no luck.  So what am I suppossed to do when noone offers me any real helpful solutions.

I guess I am feeling alittle down this week as my frustration levels are high and I am just plain sick and tired of feeling sick and tired.  I know I need a good night sleep, but that hasn’t happened in the last few days as the pain has kept me tossing and turning.  I don’t even think a visit with a friend is the solution to this latest flare.  I just need to do what I have done for the past 4 years when I feel like this… pull myself together and take one day at a time.  I am the only one that can help myself right now and that’s what I’m going to have to do!!

 

With Hope, the Odds Don’t Matter

CancerRibbons

Invisible Illness week, which occured in September is a start for bringing awareness and help to people living with Chronic Invisible conditions. October is Breast Cancer Awareness month and demonstrates how far we have to go in getting the word out about Invisible Illnesses.

Cancer research and awareness has been a grass roots operation and has gained amazing momentum over the years. This is so important in helping find a cure and in helping individuals survive a Cancer diagnosis.

My mom is a Breast Cancer survivor. At 82 she was diagnosed with Cancer and 2 1/2 years later, she is still alive. I am very, very thankful to all the Cancer research that has taken place to help people live and thrive even after the scary diagnosis.

This week, a fellow blogger contacted me and asked if I would share a video of his wife, Heather, who beat the odds after getting a Mesothelioma diagnosis.  3 months after giving birth to their first child, Heather was diagnosed and told she could have less than 15 months to live.   It is now 7 years later and Heather is thankfully still alive.  She beat the odds and has made it her mission to raise awareness and hope for people experiencing hard times.

Please watch this video at http://www.mesothelioma.com/heather and share her inspiring story.

Reiki

reiki

Reiki is a Japanese technique for stress reduction and relaxation that is suppossed to promote healing. It is based on the idea that an unseen “life force energy” flows through our body and this life force is what causes us to be alive. If one’s “life force energy” is low, then we are more likely to get sick or feel stress, and if it is high, we are more capable of being happy and healthy.

I have tried accupuncture in the past but had never been lucky enough to have a Reiki session until this past weekend. It was an amazing experience and I can’t wait until I am able to have another treatment. I have heard alot about Reiki and also about how important it is to find the right Reiki practitioner, as the success of your treatment is very dependent upon their skills. The woman (Ms. N) that I found, through a friend, was an amazing soul and I felt very special in her presence.

There are some people that exude positivity and then there are the ones that have a negative force around them, Ms. N was the former. She looked like your everyday regular woman, but I think she had something unique about her. When speaking with her on the phone, I explained my situation and was concerned about being able to pay her the full fee. Ms. N replied that she had a calling and that she is a Reiki healer and is doing this to help people. I could pay her whatever I felt I could spare, or I could give her a little gift, or I could give her nothing at all. She also offered to come to my apartment so that I didn’t have to use up my energy in trying to get to her.

I really didn’t know what to expect from the treatment, but from the moment it started I was overcome by a peaceful happy feeling, one that I hadn’t experienced in a very, very long time. I noticed she was drawn to my legs and that is where I felt the most heat radiating from her hands. Coincidently, my legs are my weak spot as they don’t support me for more than 10-15 minutes at a time. Ms. N didn’t know this.

After the session was over, but before I moved from the table, I told Ms. N I was very stiff and that the Fibro makes it difficult for me to stay in one place for a long time. She replied that she is stiff too from giving the treatment and that she also felt weak in the legs and had to sit down. This was the first time Ms. N had experienced this sensation after giving a treatment and she felt it was partially a result of getting my energy. She assured me it wouldn’t last and that she’d be back to normal in a short while.

I asked her where she was drawn to on my body and she said my legs. She also told me she saw a very, very vivid image surrounding me the entire session. The object she saw had no meaning to me, so she said it must be symbolic of something. We both did some research and what she saw provided me with alot of hope.

The symbol she saw, in ancient cultures was a symbol of vitality, wholeness and health. An image that was a protector of evil and that turned a bad situation into a good one. She also saw me walking through a field with hundreds of leaves that had fallen from the trees. To her, this meant that I would be walking again. Ms N. also told me that no matter what was going on with my physical self, I had no bitterness and no ill will which in itself is such a gift and so important for healing.

I know everyone of us wants to hear good things about how we will return to health and Ms. N is the only person that has ever said that to me. All the countless doctors I have appointments with and pay high copays to see, never give me an ounce of hope that I will feel better. They give me prescriptions to take to manage my pain and my symptoms and tell me to deal with the situation. It’s no wonder I felt like this session was a special one, because it brought me hope and made me think about the future when I would be restored and be able to walk through that field on a breezy fall day and just enjoy being in that moment.

Friendship is a Gift

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I’ve been ill for 4 years now and throughout that time, I have had a support system that I can count on. Although the number of people that I rely on is dwindling, as people seem to forget you exist when you can’t go out and have fun, there has been a steady core of people I have in my life. I am very thankful for that, but until recently I didn’t have someone in my life that truly understood what I go through on a daily basis.

I belong to several online support groups, that have been a great source of comfort to me, but I have been tirelessly looking for a “real live” person to connect with and recently I met someone, who suffers with the same illness as me. Meeting and connecting with her has truly been a gift to me, as I don’t feel so alone anymore.

We are in similiar situations: in our 50s, divorced without any children and live alone. We have become good friends and I think this has happened because we probably would have become friends if we met out in the real world, even if we weren’t sick. The illness can connect you, but without similiar real life interests, it would be hard to maintain a true friendship. What would you talk about?? I don’t want to constantly talk about the illness and how badly we feel. I want to talk about things that take me away from the illness.

My friend (Ms. D) has just as many, if not more symptoms that I do, but she is one of the most positive people that I have ever met. She has also been suffering alot longer than me, but still has hope. She encourages me, as I her, and we talk or text daily. She has become like a sister to me and part of my extended family.

So even though I have lost some friends along the way while I have been ill, meeting her has taken away that hurt. They obviously weren’t as true friends as I thought they were. Just like when people take marriage vows and repeat that phrase “In sickness and in health”, the same should be true for good friends.

I am thankful that I was able to meet her and that we live so close to each other. If we arrange to meet and she isn’t up to it, I get it. I don’t question her or make her feel guilty about cancelling our plans. The same goes for me. We both have had to cancel on each other at the last minute, but we understand why and don’t take it personally. It’s the illness acting up, not the person.

Her friendship is a gift to me and I will treasure it.

Friendbracelet