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.

originally published at ggmandy dot com on 6-15-18

Dear Fibro Friends;

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, and a laminectomy for sciatica after I started to drag my leg. Stomach issues. Phlebitis. That’s the shortlist. Oh, and I’m an RN. 

Medical Leave

I had been in and out of my employee relations office on 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.  

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 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 was a friend. It seems so simple now to know to be careful to who you give detailed personal information.  I wasn’t really thinking clearly due to how initially ill I was and didn’t realize it at the time. 

Paying Bills

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. 

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 its best. Basic nutritional guidelines, such as sugar and gluten-free like the nutritionist first recommended having 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 to 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.

Your Fibro Friend,

Colleen Sullivan

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 12 years had I not been on disability.