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Qtr 1 2010

Qtr 1 2010

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Published by: JodieLyn on Mar 03, 2011
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January 2010

VOL. # 2 ISSUE #1

Fibro Friends Forever
There comes a point in your life when you realize; Who Matters, Who Never Did, Who Won’t Anymore, & Who Always Will. So do not worry about the people from your past. There is a reason they are not part of your future. We are a special family. Only “we” can truly understand what someone with chronic pain is going through.

Disability……oh that ugly word!
If you have fibromyalgia, chronic fatigue, or any other chronic pain condition that makes life difficult enough as it is, much less make it where one is unable to work, you may need to look into you short term and long term options. I for one know that taking time off from your work just for the flu is frowned upon, of course depending on your career/job, but even out on a short-term disability can make you appear less “worthwhile” to a company. Now wanting to go on long-term disability, well that just makes you a weak person, unable to live life, or worse yet, a lazy “you know what” that just doesn’t want to work. Bull “POOP”!!!!!!! I love to work and there are so many times that I want to just go out and try, but when I sit down to even consider it and look for a possible job, well, there goes my flare, my migraine, and my exhaustion. Can I hear an “AMEN”? Is it just me? No, I know it isn’t, because I have had many calls, emails, etc., from many of you asking me, “what are you suppose to do”. I have a new group member who has just been dx (diagnosed) and she has so many questions and frustrations and well, is in phase one of her journey. I am doing my best to be there for her and to guide her. Being a “life coach” is what a friend of mine recently entitled me. On a side note, she thinks I should become certified as a Life Coach…Anyway, back to our group member, phase one, most of you remember that phase, I was in it for almost 3 years. So what do we do about not being able to work? To make it successfully through a medical leave, or a shortterm disability process, a process we do not want anyway, you will need to work closely with your doctor. You know that man that you go see regularly, the one that it took years for you to find, or maybe you are still looking for the right one, (another subject you can ask me about). For long-term solutions, well, dealing with insurance companies on top of your doctor because what the insurance wants the doctor to put in words may not be what you need your doctor to put into words, so you have to deal with the insurance to get them to help you. There is also dealing with the government, because if you are not working you may end up on some temporary government aid. Most of us know how helpful they are. So, now, if you are working on long-term or permanent disability, there may even be the need for, and here it goes, I am going to say it, a lawyer. I have one. I use Allsup and if you have questions about them, give me a shout out. Anyway, you will also need to educate yourself about the process, or talk to me, because I have already done the research, LOL, as this can be a complicated issue. The thing is, something needs to be done, because the bills just don’t get paid, and sleeping on a park bench would make your pain worse, so here are some ideas about where to start:
(cont on page 2)

Due to the overwhelming questions regarding disability, I am dedicating this issue to this topic. Upcoming issues will have a variety of subjects and I welcome all suggestions and ideas as I have in the past.

Possible Upcoming Articles/Topics:
  The XMRV Controversy Who Are You & How Are You? Now that you have been dx with FM/CFS The Med’s conflict. FM vs. CFS, what are the differences? FM, IS it all in the head? Maybe now it is. Vita. B & D: How they Help.

  

January 2010

VOL. # 2 ISSUE #1

Continued from page 1
Share some of your experiences with me so that I can share them with others. We all like to know what our other group members go through. Email me at fibrofriendsforever@yahoo.com. Short-term Disability or Medical Leave
If your condition is preventing you from doing your job, going to work, keeping you from giving 100% (oh wait, employers want 110%) the best place to begin is with your company’s HR department. You will need to ask about what the medical leave or short-term disability policy is and what the requirements are to be eligible for it. Many times, depending on your job, a few weeks or a couple months of rest and relaxation may put you into some sort of remission and improve your symptoms to where it may be possible to return to work. The good news is that if your company employs more than 75 people at one place, your employer is required to keep your job open for you under (FMLA) The Family Medical Leave Act, which protects those who need to take time off for a medical condition.

Long-term Disability
Long-term disability insurance is what is so hard to get. Those of us that have a chronic pain condition such as FM or CFS, and are still working or have just stopped, are usually too young to get Social Security Disability Insurance (SSDI). We, or at least I, was told by my lawyer that because of my age they will deny me for sure the first time. Not based on my health issue, but based on my age. They won’t even look at my case because of my birth date. I don’t even know what kind of tangent to go into because of this. Anyway, then more likely than not, I will be denied a second time. Which, I was. Now I am at, what they call “the hearing” stage. I am waiting to get a hearing date so a judge can hear my case. That in itself takes up to 2 years. If a person qualifies, disability insurance will provide some sort of monthly earnings. It will not be much, that if for dang sure. I am so sorry for those out there that have to live on SSDI income. I am so incredibly lucky to have a husband that has a decent income and doesn’t want me to work because of my health. Nevertheless, I cannot, in my wildest thoughts imagine having to live on SSDI income. However, it is there if one can qualify for it. According to government statistics, only 15 to 20 percent of fibromyalgia sufferers are currently on long-term disability; however, because many people with fibromyalgia also suffer from overlapping conditions, these other conditions are probably considered as the reason for long-term disability rather than the fibromyalgia itself. It’s no wonder FM isn’t taken seriously. It is my guess that the percentage of FM sufferers on Long-term disability is much higher.
(cont on next page)

http://www.womentowomen.com I have found this website to be very helpful. Thought I would share it.
With this being my first newsletter since, well, I think it has been almost a year now, I am sure you have noticed lots of changes. I now have the Facebook for Fibro Friends Forever, which I know not all of you have or care to have. That is ok. I will be going back to using the email more, so I will be between the Facebook and the email groups. I am also pairing up with a couple other FM friendly sites out there, as you will see in the future. I hope you are all well, and as I have always said: “I am always here for you no matter for what or when. I am here for questions, a listening ear, someone to vent to, someone to lean on, and someone to just understand because it’s all you need. Fibrohugs my dear FM Family & may 2010 be a wonderful year for you.

January 2010


Continued from page 2
Journaling, Working with Your Doc, Lab Tests
Now we have this horrible monster living inside of us, we have gotten to the next phase where we have accepted it, we are realizing the need to do something about it in order to survive, it is important that you communicate very clearly with your doc. You need to make sure that all your symptoms are being meticulously documented, not just for the doc, but for the insurance and for the case you will need to build if you are going to need Long Term disability. There needs to be detailed notes about all your office visits, along with all your symptoms, complaints and issues, new or old that are giving you a hard time. I know this is hard, because we, who suffer, are normally not the type that complains. Our charts need to have details, many details. All the things that you wanted to do during the month that you were not able to do needs to be documented. A pain diary of sorts is well suited. I know it seems tedious, but if you need journaling forms, let me know and I will email them to you. It will help, I promise. These records are critical for your case. Get copies of all your records from all your docs from the time you were dx. You may be changing docs quite a bit, and it is in your best interest to have the records on hand. All of your tests done, it is also important that you have all the results as well. Just keep and get all you can to build your case if necessary. If you are working, get your evaluation records. Sometimes we may not see what our supervisors see. I know that mine told me that in the couple months before I left, he noticed lots of mistakes and things forgotten that I never would have done before.

Who Qualifies for Disability?
In order to qualify for long-term disability, you must have been employed in the past five years and stopped working because you became disabled. Other qualifications the Social Security Administration (SSA) will look at include whether your condition is on the list of "disabling impairments," and if not, is it severe enough to keep you from holding down a job. Currently, fibromyalgia is not on the list of disabling impairments, which makes proving a case for long-term disability harder, though by no means impossible. It makes good record keeping and symptom tracking particularly important, however. With this in mind, I have quite a few forms and such for you. Just ask….please! The SSA also examines the type of work you have been doing over the last 15 years. This kills me. They told me that I could still do accounting and bookkeeping. With my brain fog and migraines, would you want to hire me? I mean really! To qualify for long-term disability benefits, you cannot have the ability to return to full-time work of any kind. This is because our activities of daily living have to be severely impaired by our illness. These "activities of daily living" might include our ability to shop for groceries, to drive, to make our own food, or even to take a shower on our own. I cannot go grocery shopping on my own. I also should not be driving. Sometimes I think, where the @%^& am I going, or my balance is off and my kids are telling me “mom, you should not be driving.” Scary, I know. There are so many times I have these great intentions of cleaning house or making a great dinner but end up in bed at 6pm because I am so exhausted or in too much pain. I feel so sorry for my family. If you do decide to file for long-term disability, let me know first off. Then we will talk about what to do next. DO NOT GO ON THE SOCIAL SECURITY ADMIN WEBSITE AND REQUEST THE INFO AND SUCH. If you're not sure that the idea of leaving work is right for you just yet, consider these options: Job modification: Are there any adjustments you could make, so that you could continue working instead of going on disability? (Ask me if you need help with this) Ask about more frequent rest periods, talk to your doctor about job related modifications that may need to be noted from a doctor to an employer. The doc will be able to tell you if your job complicates your condition and if it would be best to go on disability. You may also want to explore other jobs within the company or even look for a different job. You may want to consider cutting down on your hours. There is an emotional component to being on disability: besides providing an income, one's job also often provides a social network and sense of purpose. It even defines who we are at times. That said, remember that if you cut down your hours now and then go on disability later, you will be paid at the lower rate; or, in the event that you cannot keep up with a new position and are fired, you will have no recourse. For more information about your rights as an employee with fibromyalgia, read the U.S. Department of Labor Job Accommodation Network's work guidelines. It is well to remember that applying for long-term disability is a process that can take months to years to complete, especially with a complicated disorder like fibromyalgia. However, if you are unable to work, it might be the best option for you. Just remember to get help and not do it on your own. It is not an easy process to go through, as it can be very humiliating and frustrating. The most important thing to remember is that you are not alone. You have your FM family and I am in that family. I am always here for you.

January 2010


If you are interested in Learning Absolutely Everything (You) Need To Know About Disability All In One Place for FREE! Copy this link and Go to: http://www.thedisabilitydigest.net/176-0-5-4.html You won't be disappointed FibroHugs, JodieLynn

JodieLynn Soto
FM/CFS Sufferer Now not just a group leader, but a support “Life Coach” 559-756-0894 Porterville, Ca 93257
If you or anyone you may know needs help, a listening ear, someone to vent to, I am here for you, him, or her at anytime. Please do not hesitate to contact me. I am here for you! It is important for me to do so because I feel that it is in the stars for me to do this. My husband Stephen and Myself


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