Why Still Sick

If God is my Healer, Why Am I Still Sick?

“For I am the Lord who heals you.”

– Exodus 15:26 NLT

Why Am I Still Sick?

Have you ever wondered why so many people struggle with illness and weakness? You would think that since God is a Healer that He would reach down and heal his people, especially those that are believers.

You would think that since God is Our Healer, He would heal me. #godismyhealer #chronicpain Click To Tweet

It’s a question that has been asked down through the ages, I would guess.  And many have searched to find the answer. I have learned there are many reasons why God may leave us in our sickness, disability, or weakness.

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volunteering with fibro

Volunteer with Disabilities like Fibromyalgia & Chronic Pain

Question about Disability

Can you volunteer your time while being on disabilities like fibromyalgia and chronic pain?

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Letters to Friends, Volunteering
image credit: free @ canva modified by Mandy

Hello, My Friends,

I wanted to share with you what it’s like to live with Fibromyalgia, yet still, be able to volunteer. I wasn’t sure that I would be able to volunteer with a disability when I first went on disability from work, because I was bedridden for a long time due to pain and fatigue.

Over a period of several years though, my treatments of medication and gentle exercise, etc. began to work and I found myself feeling well enough that I knew I wanted to give back to the community again. I just needed to
find the right way to do it, so that I wasn’t overwhelming myself too much.

Over the years my chronic pain was managed and stable. #volunteering #disability Click To Tweet

Great Volunteer Organizations

I found a great organization in my home province of BC called Patient Voices Network. They give everyday ordinary people the opportunity to have a say in how health care is delivered in the Province by allowing us to be Patient Advocates when Health Care Organizations are looking for the Patient Voice in their engagements.

  • This can be done in many different ways –
  • being part of focus groups,
  • surveys,
  • committees or
  • councils and so much more.


After becoming a member of PVN, I immediately jumped in by becoming involved in a committee that was working to improve surgical outcomes for patients with colorectal cancer. I helped to develop a DVD that all patients would receive along with a booklet outlining what to expect as they started treatment, right from the moment of diagnosis all the way to follow up
after surgery. Since then, I’ve been invited to several forums, I’ve participated in some surveys and focus groups and I currently sit on 4 different committees, one virtual reality testing group and one Provincial Survey Measurement Working Group.

Doing Too Much with Chronic Pain

Everyone says “oh, you do so much”, but my actual time commitment is really not that much. One committee meets quarterly, one meets bi-monthly, and for some of them, I don’t even have to travel as I can join them online. I do travel to Vancouver from my home in Langford for 2 of
the groups, but my expenses are all covered, and it’s fun to meet with my teammates in person.


I get such a great sense of satisfaction being able to give back to the community in this way. I know I’m making a difference to others with the work I’m doing, and because I’m able to pick and choose what I want to commit to, I am able to maintain my own health at the same time. I have plenty of time to rest so my Fibromyalgia stays under control, and if I’m not feeling well for some reason, I can always call into the meetings that I normally attend in person.

I highly recommend looking into Volunteer work for anyone with Fibromyalgia as there are many ways you can assist others while still taking care of yourself. Find something you are passionate about, and see if you can make it a part of your life. It helps get you out of the house, keeps you active and involved, and helps others at the same time. Don’t know where to start? Here’s a website that may give you some direction. Sixty and Me

I hope you find it as enjoyable as I do.


From my heart,
Pamela

volunteer with disability, fibromyalgia, chronic pain
image credit Canva. Modified by Mandy

Thank you, Pam, for sharing with us about volunteering. This is a wonderful way to get out and do something for others.

What About You, Readers?

How are you get out and doing for others? What volunteer organizations do you recommend? Share in the comments below.

If you are in the USA, I found this website that gives a lengthy list of Volunteer organizations with which you may be able to get involved.

Have More Questions About Fibromyalgia?

Letters to Friends ~ How Are You Doing Since Your Diagnosis?

Letters to Friends ~ Why Are You So Tired?

Letters to Friends – Where Does Fibro Pain Hurt?

What is Fibro Fog? Why are you Crashing?

What Were Your First Signs of Fibro?

Is There a Cure for Fibromyalgia?

Movie Review: Breathe

What a beautifully, inspiring movie!

“Breathe” is an inspiring true story. After being paralyzed by polio at age 28, Robin Cavendish refuses to be immobile and with his loyal wife, Diana, becomes an advocate for the severely disabled. “Breathe” is the feature-film directing debut of actor Andy Serkis.

I love to see how others have made their way through trials. And this movie fast became a great biography. Celebrating the lives of ones who made a huge difference for the severely disabled. So many good takeaways from the movie. The first being, “Don’t sell yourself short. Your life isn’t useless.” And then especially the loyalty and commitment of his wife and other friends. We can all learn something from this life.

Deeply Touching

“Breathe” deeply touched my heart by the determination of Robin and Diana to never give up. Even though things seemed hopeless or they had no one backing them, they moved forward and made things happen. In the end, they helped countless severely disabled people have a fulfilling life instead of one of depression with no hope.

This movie also gently spoke of allowing terminally ill patients the privilege of dying on their own terms but not only that but also that a change of venue can bring an amazing change of view on one’s viewpoint of life for the severely disabled. Each life has value and should be treated that way. It isn’t right to put people away from view in a hospital ward just because they are severely handicapped. We should be doing whatever we can to make life better for them.

In the end, Robin chose to end his life because his body could not take any more from artificial breathing. But he lived a fulfilling life for twenty years. His son got to know him and love him. He was able to die gracefully with his family nearby without a traumatic ending.

I was spellbound by this movie, cheering at times and crying at other times. Beautifully done.

Definitely a MUST SEE FILM.

Inspiring Must See Movie - Breathe Click To Tweet

Fibro and Finances

Fibro Friend ~ How Are Your Finances Holding Out?

Are your Finances holding out?

This is a question that most friends and family never think to ask, “How are your finances?” It’s a little personal and maybe that is why no one asks but the truth is that sickness can take a big toll on anyone’s finances no matter how much insurance you have. Not only does the patient lose work time but also the spouse or caregiver. I am told that sickness is the number one reason people file for bankruptcy. (See this article at CNBC)

My friend, Colleen Sullivan knows about the challenges in finance due to her own journey with fibromyalgia. I met Colleen through the Christian Chronic Illness Network. She has offered to share her struggles with staying afloat and the lessons learned.

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curleque by Coffee at pixabay

Dear Fibro Friends;

Finanaces and Chronic Pain
image created in Canva photo provided by Colleen Sullivan

I keep thinking about what I wished I’d known about the landmines I was about to walk through after I realized I could no longer work and finally had to apply for disability due to fibromyalgia and all of its friends. 

I’ve had fibromyalgia and chronic fatigue syndrome since 1995. I managed to work until 2010. During that time frame, I developed a host of chronic illnesses and medical problems. My internist blamed much of it on fibromyalgia. I had an arthroscopy, a total hip replacement, a laminectomy for sciatica after I started to drag my leg. Stomach issues. Phlebitis. That’s the short list. Oh, and I’m an RN. 

Medical Leave

I had been in and out of my employee relations office with medical leave many times. Honestly, I have to say, I didn’t fully understand my rights because I never took the time to truly read the fine print. I never really questioned what I was told. Questions should have been asked. I was, I think, politely pressured to return to work as soon as possible after each medical leave. That’s their job, to get the employee back to work. And I wanted to be a good employee. My job though was to take care of myself. Nurses are notoriously better at taking care of everyone else but themselves.  

Medical Leave – I should have asked questions. Click To Tweet

Disability

I’d actually qualified for disability for many years but didn’t want to leave the job I loved. I just didn’t. But after an infection left me with lymphedema and Reflexive Sympathetic Dystrophy in my leg with the hip replacement, I couldn’t manage both fibromyalgia and the leg pain. I was in so much pain, I was afraid it would start to affect my job. A risk I could not take. Since I was over 56, I decided to take early retirement disability. I did so without researching the best way to do so. In hindsight, I should have gone to my local social security office before I resigned. 

I should have visited the Social Security Office before taking early disibility retirement, #disability #chronicillness Click To Tweet

I was assisted with my disability application by my benefits agency. I was fortunate to have them help me fill out the forms but I was initially denied. It was then suggested I get a Functional Capacity Test. I failed it completely. I got my disability on the second try, with an apology and back benefits.  

Looking back, the employer’s goal is to get the employee working and minimize company costs. A third party, such as a trusted friend or lawyer, might have been a better choice. In a great deal of pain, living off minimal state disability benefits and credit cards; I was not able to really fend for myself. I inadvertently confided in someone I thought a friend. It seems so simple now to know to be careful who you give detailed personal information to.  I wasn’t really thinking clearly due to how initially ill I was and didn’t realize it at the time. 

Paying Bills

money issues finances

Taking money out of my 401K to pay off medical bills and credit cards wasn’t a good idea either. I later found out I could have borrowed against my retirement account before I resigned with a great deal less penalty. I also could have gone to an agency such as Consumer Credit Counseling to arrange payments with less interest and fewer penalties. As a single woman with a long history of medical expenses, even with good insurance, I didn’t exactly have a backup plan for finances. 

Things you should do before making financial decisions with #chronicillness #longtermillness Click To Tweet

I also didn’t keep very good track of my medical records. Now I know that when I feel like I’m not remembering things, I’m probably not and I am in a ‘fibro fog.’  Had I kept better track of my records and monitored what was being written down, my application process would have been much easier. I now get records of my complete hospital stay, especially any doctor’s notes. I make sure they reflect what actually happened and are not just the doctor’s opinion of what happened.

Write down the results of every doctor’s visit and track symptoms. I can not say how much I wish I had done this before I applied for disability. A miswritten ‘return to work note’ made things very difficult on the first application. This is why third-party help would have been of great benefit. 

Where to Spend Your Money

The cost of fibromyalgia and all of its friends continues. Insurance doesn’t really cover what works. I have acupuncture up to 4 times a month. Take the necessary supplements. I’m blessed to have found self-hypnosis and self-Reiki for pain control. Sometimes I still need a prescription for pain medication. But getting to this point was not easy. 

I wasted money on specialists that really didn’t help. In my case, I could have skipped the allergist. The most worthwhile expense was going to a well-known nutritionist. Turned out the nutritionist figured out my allergies by my symptoms. I have tried so-called chronic fatigue/fibromyalgia specialists, gym memberships, personal fitness trainers, food and supplement programs, and the like. None have really helped in the long run. Simple walking has done the best. Basic nutritional guidelines, such as sugar and gluten-free like the nutritionist first recommended has helped the most. There are no quick fixes. But I’ve sure tried to find them!! Save your money! 

In Conclusion

I’ve often wondered why I was so trusting and, to be very honest, wasted time and money on quick fixes. Perhaps it’s because I was so very ill and just wanted things to go back the way they were. Maybe it’s because I was grieving the loss of my health and my job. Or maybe it was God teaching me a lesson. The reasons are less important now. 

I feel blessed to be where I am now because of all I’ve gone through. Despite everything, the past five years have been very good. I still miss my job. I still have too much pain. Now I have COPD with my asthma (never smoked.) Yet, I still feel blessed beyond measure. I have learned to appreciate life more than ever before.

What I wish I had Known About #Fibro and #disability Click To Tweet

Your Fibro Friend,

Colleen Sullivan

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curleque by Coffee at pixabay

Thank you, Colleen, for your openness about finances. I could really relate to many of your obstacles. We made many of the same mistakes you did and lost our shirts in the meantime. I was fortunate to have a friend who worked for a disability attorney. She pushed us until we decided to apply for disability and then walked us through the process.  And that has been the best decision we ever made. I would not have the medical care these past 8 years had I not been on disability.

Mandy Farmer