I offer both in-person and online Discovery Sessions that focus on wellness – not just illness, but the overall concept of health as “…a state of complete physical, mental and social well-being.” (Straub, 2012)  If someone wants to look at their relationships, their work, their feelings about their health challenges, or simply wanting to open up to learning more about what is going on “inside”, the Discovery Sessions are a quick, easy and non-therapeutic (meaning they aren’t therapy) activity to tap into your intuition.

For PFAM, I did a session myself on addressing the theme on using images to ‘scrapbook’ my illness.  Below, you will see what you would do on an online Discovery Session with me.  The sessions only allow five minutes to put together the collage – that is important.  We want to tap into our intuition and choose images before we have a chance to block them out or think too much about them by bringing in our feelings, perceptions, concerns and so forth.  Every session begins with a prompt we come up with when talking before hand and, for mine today, I chose “How do I see my illness?”

Here’s what I came up with:

My notes that I took during the session:

“This image set offers me more image-reference rather than explicit photos, which made this session more reflective. Lots of blues, surprisingly more serene while doing it and images chosen imply it.

• Action refers to work, which is constant with C.I.
• Middle image is ripe tomatoes, I choose to represent setting seed.
• Smallest image of hospital bed acts as a constant reminder that floats above everything.
• Image showing invisible illness among visible social ties.
• Are those ruins or indications that over time I’ve been worn, but still here to be marveled at in terms of achievements?
• The colorful salad represents both nutrition, that I am what I eat, but also the ingredients I need to constantly choose to make my life the healthiest it can be.
• The images of the swirling circles, of course, represents my immune system that is involved with the work I must do. It interacts with the level of visibility I choose to have and the seeds I plant every day for myself and those around me.
• Notice the unintentional direction that seems to swirl towards the hospital bed, but is distracted from reaching it due to the other images it overlaps. Tells me I still can make a difference in my overall health direction.”

 (C.I.= chronic illness)

Again, these sessions aren’t therapy, even though they have therapeutic properties.  I am a wellness facilitator, which simply means I organize the setting and coordinate the process, but the participant – you – choose the image meanings, define the connections, and take from it what you want to use.  My role is in simply asking the questions without any expectations or judgment.  I supply the momentum to assist you in exploring what you want to learn from you yourself. Who better to answer your own questions?

I am offering these one to one-half hour online sessions for only $15 throughout December and January,  because I want anyone to have a chance to take part.  It is a wonderful, self-care opportunity to play and learn, without concerns of lacking ‘creativity’.  We didn’t worry about that when we made our first collage in grade school, so why stress out about it now that we are all grown up?  That need to explore is still within us, but we’ve had many years to build up our barriers and walls of fear.  If you have ever spent time with grandchildren or your own children and loved how carefree they are when creating, that is what these sessions can offer you, too.

This is the season for joy~ and online Discovery Sessions are just one more opportunity to create some for yourself (or a friend) who could use a little lightness in their day.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

It’s October here in New York and I can already feel the chill in my bones. Not a good feeling for anyone, but especially for fibromyalgia sufferers. The thing is – I know it’s going to be a long, cold, winter, but what am I supposed to do, curl up in the fetal position until May?

I can’t do that and neither should you. In the winter months it’s especially important for you to move.  You must keep that blood flowing and keep those muscles and joints loose. Now, exercise won’t be as easy or as comfortable as in the summer months, but it’s just as important to your fibromyalgia treatment. Your two biggest obstacles will be motivation and the cold weather.

So here are 3 quick tips to put you on the fast track to exercise and health this winter, you can do it!

Who has the motivation to exercise in the cold?  No one. The secret is to look past the winter. Don’t concentrate on the winter months.  Instead begin to prepare your body for the spring/summer that is coming. Where do you want to travel this coming summer? What activity have you wanted to do for a while?

Go to your calendar, mark the date, and exercise towards that goal.  As you exercise, picture that goal clearly in your head, focus on it, and believe it. Your mind will always look to accomplish what you truly believe in.

Your second road block will be the cold temperature. In the summer months I like to exercise in the early mornings. Winter – not so much. The winter mornings are always nice and chilly, not a good time to exercise. So instead I will get in my workouts after I have been up awhile and loosened up a bit. What usually helps? About a cup or two of Green tea. Not only will it warm you up but the little caffeine it has will give you the extra boost you need to get moving.

No sunlight? Don’t forget your vitamin D. Vitamin D is bountiful in the summer months as we soak it up from the sun. In the winter it’s a little harder to feel the sun. A good vitamin D supplement should help keep your immune system nice and strong. Exercise will not only keep your body loose this winter, it will also strengthen your immune system.  Fibromyalgia plus a cold is never a good thing.

Bonus Tip: It’s called the “Law of Expectation”.  It means focusing on expecting good things in your life. Forget about expecting more pain and fatigue. Make an effort to expect good health and a bright future.

As always, remain positive this winter and know that summer is just around the corner, so start planning…

Eric Suarez, CPT.

www.fibromyalgia-fitness.com

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Eric Suarez is a Certified Fitness Trainer and the owner of Valiant Personal Training in New York. He is the founder www.Fibromyalgia-Fitness.com and the author of new book -Fibromyalgia Fitness, 12 Weeks To A Healthier You!  He is offering a discount on his book to MLWT members and I will be posting more information about those details here very soon.

Since 2008, Eric has been helping fibromyalgia sufferers gain control over their symptoms by using simple functional exercises and healthy eating.  You can contact Eric directly at eric@fibromyalgia-fitness.com  and follow him on Twitter at @Fibro_Fitness.  Stop by, consider signing up for his e-newsletter and be sure to say hello.

Building on the research I conducted on lupus peer-led support groups here in Oregon, I continued to interview, research, review content and take part in as many conversations I could with regards to what ‘support’ means to those of us living with invisible chronic conditions.  My job here from 2008 up to now has been to gather, organize, clarify and respond to what living with lupus and related chronic conditions involves for as many people as I could learn from locally and beyond.

It has been difficult for people to get an idea of what MLWT is about, mainly because it was still forming and relied heavily on community feedback.  The blog wasn’t a general platform designed to talk about my personal challenges, although there have been a few posts that did open up that door.  It was more of an opportunity offered to those here in Oregon and SW Washingtonto chime in regarding resources, support needs, experiences, challenges, and successes achieved in maintaining their lives in the face of illness.  Although few commented publicly on the blog, the emails and conversations we shared were valuable in learning more about many of you out there and what you’re looking for regarding finding support in living your kind of ‘well.’

However, as we all know, we can research, read and review until we’re blue in the face (or red in the eyes), but still not get anywhere until we put all of that stuff we learn into action.  I’ve written about this topic before here on the blog and this new phase for MLWT is to follow through with this important learning concept.  It is time to apply what I do know and step into the ring of supportive service.  I will maintain a mission statement, because I believe them to be very helpful in staying on track with where I’m going and give some assurance to those I work with about where my commitment lies.

My revised Mission Statement is:

“My mission is to inspire individuals living with ‘invisible’ chronic illnesses by facilitating support opportunities that reflect their wellness potential here in Oregon, SW Washington and beyond,  focusing less on their disease and more on  their own intuition towards designing the lives they seek.”

The way I translate the MLWT mission is through two distinct service roles.  These roles are as a Wellness Facilitator and as a Wellness Doula.

As a Wellness Facilitator, I focus primarily in creating momentum through communication.  I assist in the process to strengthen wellness plans that will reinforce personal chronic disease self-management.  My role is to contribute structure in a process that will  encourage participants to explore their possibilities, discover  their own untapped potential and to assist in creating objectives for themselves.  I work in health education and training, wellness and health-related support group settings, as well as directly offer individual and group work.  I also collaborate with agencies, health-focused organizations or foundations, and local wellness service professionals.

As a Wellness Doula, my role is to act as a your partner in a more hands-on way to bridge between your health and wellness education source (physician or medical provider, counselor, therapist, life or health coach, etc.) and you.  Although I still facilitate your process in designing your self-care needs, there are times when a little extra support is needed.  As it is with a traditional doula who assists a woman in preparing, experiencing and adjusting to the new life she brings into the world,  I support you during the pre-diagnosis, diagnosis and the on-going adjustments that often come from living with a chronic condition.  I provide non-medical,  as-needed individualized support helping you define and succeed in your wellness goals by making them relevant to your life as a whole.  The focus is on you rather than simply on your health challenges.

I’ll cover these in more depth in the next few days and it will be placed on my website as well, as we go through this transition.  For now, you are more than welcome to ask me questions in the comments section about any of these changes I’ve mentioned or you can always email them to me at any time.

Well wishes to you all~ take good care of yourselves,

Maria

There will be a video of the presentation available to watch, if you belong to the PDXFibro/CFS Ning community.  Cheryl also provides printable versions of her materials on her website, including the brochure she handed out at the meeting, and welcomes any questions here on the blog or to her directly.

There are two big concerns that sometimes become walls blocking us from considering applying for disability .  One worry is “How much will it cost me?” and the other is “Who should I get to represent me?“  Sometimes, these two questions can play off of each other, with the question of cost determining our decision about representation.  Local attorney, Cheryl Coon, offers us a quick summary targeting both of these questions.

 ~~~~~~~~~~~~~~~~~~~~~~~~~~

How do Social Security Representatives (Attorneys and non-Attorneys) get Paid?

When clients come to see me about their case, the first question is usually “Do I have a good case?”  The second question is “What will you charge to help me?”

The easiest question is, of course, the second one.  (Evaluating the strength of a case is a complex process that includes a claimant’s age, education, past work, and general credibility (which includes alcohol and drug use, criminal record).  Then there are the factors beyond the claimant himself – which judge is assigned to hear the case.)  Today’s column explores the myths about how representatives (reps), both attorney and non-attorney get paid.

Myth #1:  Only some attorneys and non-attorney reps offer to represent you for free until or unless you win.

Under the Social Security law and regulations, no-one can charge you for helping you with your case without first getting their fee approved by the Social Security Administration.

Myth #2:  Even if I lose, my attorney/non-attorney rep can charge me a lot of money.

What you pay depends on the agreement you made with your attorney/non-attorney rep.  Although it is widely believed that you can only be charged if you lose, in fact, neither the Social Security law nor the regulations say this.  As a practical matter, I do not know any attorneys who charge if they are unsuccessful in winning your case.  You can and will be asked to pay out-of-pocket expenses such as postage or the costs of a medical consultation, regardless of the outcome.

Myth #3:  Attorneys and non-Attorney reps get paid 25% of back benefits.

Attorneys and non-Attorney reps do get paid out of back benefits, but it’s the lesser of 25% or $6000.  The cap of $6000 always applies.  In a typical case, the fee is usually closer to $3000 or less.  In an SSI case, where the monthly amount is currently $674, a year of back benefits will result in a fee of $2000.

Myth #4:  Non-attorney reps charge less than Attorneys.

The law allows both attorneys and non-attorneys to charge the same amount.

Myth #5:  Anyone can be a non-attorney representative.

In order to insure the best possible representation, the Social Security Administration recently changed its rules for direct payment of non-attorney reps (a person can represent another without getting direct payment but it’s a powerful inducement to comply with the rules).

The law requires that non-attorney reps must:

• possess a bachelor’s degree from an accredited institution or possess equivalent qualifications;
• pass a written examination administered by the Social Security Administration, which tests knowledge of the relevant provisions of the Social Security Act and the most recent developments in agency and court decisions;
• obtain professional liability insurance sufficient to protect claimants in case of malpractice;
• pass a criminal background check; and
• complete continuing education courses.   (Effective August 29, 2011)

Myth #6:  You don’t need to understand how to do a federal court appeal in order to represent a social security disability claimant.

The Social Security disability process has multiple levels of administrative appeals, culminating in a hearing.  If you don’t win at hearing, all is not lost.  There is one more level of appeal, known as the Appeals Council.  After that, a claimant still has the option of going to federal district court to appeal.

Social security disability appeals to federal district court are common.  Many claimants succeed here who did not get favorable results at hearing.  Only attorneys are allowed to handle federal district court appeals.

A successful federal district court appeal depends upon the record that was created during the other levels of appeal, including: evidence submitted, examination of the claimant, cross-examination of the medical and vocational experts, and briefs.  So, while you don’t have to understand how to do a federal court appeal, it helps to have a representative who does, because he or she will approach the hearing record with that in mind right from the beginning.  Moreover, many attorneys will not bring district court appeals for claimants whom they did not represent during the hearings process, so it can be hard to find an attorney at that stage of the process.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Cheryl Coon exclusively focuses her law practice on social security disability at all stages of the process, representing clients from Eugene, Oregon to Vancouver, Washington. She can be reached at ccoon@stc-law.com. Her law firm, Swanson Thomas and Coon, can be found at www.stc-law.com.  Cheryl’s blog offers case studies called “Can This Case Be Won” and I encourage you to read more about how this challenging process evolves.

Another resource Cheryl invites you to check into is the Ticket To Work Program , which works with the disability program incorporating employment opportunities without adversely affecting your disability rights.

One of the many things I’ve learned about the fibro community is that pain is a strong motivator.  With lupus, pain is sometimes present or may be more present in our days than we would like it to be, but not one of the key symptoms associated with our illness.  When someone lives with pain, it affects and changes us to seek out answers, information, resources, or alternatives at a level that we may not be naturally inclined to act.  As someone living with lupus and looking just fine, it is easy for me to decide not to talk about my health.  I can blend in without too much effort, keeping the internal chaos as invisible to myself as it is to the person standing in front of me.  However, I started out with a great deal of pain, before I knew that lupus was ravaging my kidneys, and I know that I showed my pain in the way I attempted to walk, reach, sit, smile…live.

I have been granted an opportunity to meet with many local people and have become part of the strong Fibro community here in the Portland Metro area.  If you are interested in meeting some of them, many are members of their Ning community that I have listed down in the right margin here under “MLWT Networks.”  I receive emails from locals living with fibro (as well as worldwide) on a regular basis, more so than from people living with lupus.  They speak about what they are looking for, what they are doing and how they are thriving in spite of their constant pain.  Many are open about asking for help, even if it is a difficult thing to accept at times.  They welcome visitors to their groups in order to ease the discomfort a new environment can create for many of us.  The emotional wall seems much more flexible for these individuals and, I suspect, their life with pain moves them to keep connected to something or someone with hopes to mute their body’s hurtful signals to any degree possible.

Although my mother lives with, what she has been told by her doctor, “secondary fibromyalgia”, I still don’t ‘get it’ and I know I truly won’t ever fully understand what she goes through.  I do, however, want to learn more (and hear more) about as many fibromyalgia experiences as possible, because I know I will be able to better appreciate the information I receive coming from the ‘trenches’ more than I will from a research article or medical/pharmaceutical presentation.  I want to be here for my mom in a way that will actually acknowledge her unique experience and offer her the support that she needs, when she needs it.

To honor those many people living with fibro that I have met through MLWT, I will be hosting two book discussions in a row that focus on living with Fibromyalgia.  The first book is FibroWHYalgia, by Sue Ingebretson, and our discussion on Shelfari.com will begin October 1st.  To kick things off, Sue has offered a free, signed copy for the lucky winner.  Even if you don’t get around to picking up a copy of the book right now, you can still join in on the discussion and we encourage you to do so.  It’s a chance to have a conversation that is guided by the topics covered in the book and an opportunity to perhaps learn about additional resources that may be of help in your own fibro experience.

Here’s how you can get the FREE copy of Sue’s book for the discussion:

• The contest will run from today September 15th until 11:59 PM Pacific time, Friday, September 23rd.
• The winner will be selected in a random drawing on September 24th. I want to keep this give-a-way free of strings requiring you to do anything to win.  However, since this is for our MLWT Book Discussion group, you will need to register a free account with Shelfari.com.  It is a great place to meet others reading the books you are and MLWT isn’t the only group.  Authors are also beginning to sponsor their own discussions, so it is worth the effort and a great way to keep up during the winter reading months.
• I would also like to add your email addresses to my new seasonal enewsletters (The MLWT Muse) that highlight wellness updates and resources to know more about, both local and outside ofOregon.
• I will contact the winner via email on September 24th, and they will have 48 hours to reply in order to claim their prize. (So be sure your email address is correct!) After 48 hours I will move on to another winner.

To enter this give-a-way:

1. Sign up for the MLWT Mailing list (directly to your right on the MLWT website) and leave a comment below letting me know you’re signed up.  Then,
2. Sign up for the MLWT Book Discussion Group on Shelfari.com .
3. If you are already registered for either or both of these, just leave a note in the comments here to enter your name!

Once the winner is chosen and has claimed their prize, Sue herself will contact them by email with her congratulations and get their mailing address for the prize copy.  The winner should receive it in time before the MLWT discussion really picks up.

Best wishes to you all for the win and I’m looking forward to the upcoming discussion!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

To learn more about Sue and her book, you can find her on Twitter (@SueInge), her Facebook fanpage , and her book’s website www.FibroWHYalgia.com .  She is also an MLWT Guest writer and you can enter her name in the search field on my website to bring up posts that she has contributed so far.

This Fall, the focus here at My Life Works Today! begins to broaden its scope and explore the common themes involved in living with chronic illness.

Initially, I started this network in 2008 to bring some awareness and resources regarding lupus at a time when very little was offered here in Oregon.  In 1998, I searched for local resources as I entered into a life with lupus and, in 2003, it was still difficult to find much of anything that felt relevant to my experience.  By 2008, however, I tired of the empty void and threw into the internet cosmos an idea, making use of the burgeoning social media to help me putOregonon the lupus map.  I had hopes to raise my voice and make the word “Lupus” more commonly heard so that when people Googled “oregon  lupus”, something – anything – would pop up.  It now does, along with the many other voices that have joined in, so my original MLWT project goal has been met.

Today, MLWT has evolved from a lupus patient-focused networking hub (pre-cursor to the online resources like Twitter, Facebook, Ning and other communities) towards a chronic illness health and wellness resource collective for professionals, programs, foundations, authors, advocates and service providers focusing on autoimmune and other syndromes or illnesses that are difficult to diagnose.  MLWT is for those living with health challenges that are often referred to as “invisible”, simply because the true pain and chaos we are experiencing with our health isn’t generally visible to others making it difficult for us to explain.

This next phase of the project will be to incorporate general wellness resources already available, both locally and nationally, in a more cohesive manner recognizing that there are more things about us in common than truly different when living with a chronic condition.  No matter what chronic disease diagnosis we have to accept, the common theme is that our health challenges are chronic and won’t go away.  There is often pain and repercussions from medications. There is need for daily exercise and movement, requirements for proper nutrition and access to mutually-respectful medical support.  These chronic conditions can be costly in many ways, but can be managed to some degree by taking care better care of ourselves.  My hope is to continue to highlight the tremendous talent, services, programs and resources we have here locally to consider and/or explore in designing your own personal wellness goals.

My Life Works Today! began as a statement reinforcing the idea that life with lupus forces us to manage our daily expectations in order to self-manage our health over the long run.  Lupus is what I know and I will continue to create this place of encouragement for those seeking a connection point to their own wellness possibilities.  The tagline, however, is changing in order to reflect the new emphasis:  Your Life.  Your Wellness.  Your Way.

I will write more about my new directions beginning September 18th, including online options for those living outside the Pacific Northwest.  In addition to changes in the MLWT program and on the website, the MLWT Mailing list will be activated to send out seasonal MLWT newsletter updates (four each year).  I will also be putting into motion the P.O.R.T program (People Offering Real Time) for those of you living here in Oregon and SW Washington.  As is with change, there are bound to be some bumps along the way.  I’ve been battling a number of them for the past month and hope I’ve cleared a smooth path to get us going.  If things don’t look right, aren’t received or don’t work, you know my email…just let me know.

I do appreciate your patience and support during this exciting time for all of us.

Maria

The urgent note I want to mention is that, although the group has moved to the Multnomah Arts Center , which I’ve had posted on the site.  This meeting had to be changed back to the old stomping grounds at the Beaverton Library on 12375 Southwest 5th Street . Due to road construction and the Farmer’s Market, the time has also been changed to begin at 1:30 with Andrea coming on at 2pm.

I hope to see you there~ trust me when I say this is a fun way to spend the afternoon.

Have you ever wondered how a lawyer analyzes a social security disability case and figures out whether a case can be won ?  How do the facts in a particular case add up — or not — to a winning case? 

I decided to create a column dedicated to sharing an inside look at how a lawyer takes the facts of an individual case and works with them to shape a winning argument for disability benefits.  In my column, I draw on my own cases with names and other facts changed to protect privacy to help explain how it works.  I call my column “Can This Case be Won?” because I believe that stories, especially those based on a true case, are the best way to help non-lawyers understand the legal process.  Let me know what you think!  And check it out at my social security disability blog .

Warm regards,

Cheryl

~~~~~~~~~~~~~~~~~~~~~~~

Cheryl Coon exclusively focuses her law practice on social security disability at all stages of the process, representing clients from Eugene, Oregon to Vancouver, Washington. She can be reached at ccoon@stc-law.com. Her law firm, Swanson Thomas and Coon, can be found at www.stc-law.com.

(a) elderly

(b) undeserving

(c) disabled for life; and/or

(d) taking advantage of the system

Our social security disability clients are young and old, wealthy and homeless. And their “impairments” – the word that Social Security uses – include: Fibromyalgia, Parkinson’s, anxiety and depression, ischemic heart disease, degenerative disc disease, Lupus, cancer, asthma, chronic pulmonary obstructive disease, schizophrenia, bipolar disorder, traumatic brain injury, HIV/AIDS and interstitial cystitis, to name just a few.

I’ve never met a client who would rather receive disability benefits than feel healthy and be able to work ! Many of my clients could and probably will do some kind of part-time work eventually. Very few of my clients could be described as elderly.

But unfortunately, the labels I described above discourage many people from even applying for disability benefits and that’s a shame. It’s a shame because disability benefits can serve as a bridge to carry a person from one phase of his or her life to the next phase. If you’ve been diagnosed with a chronic illness and it’s reached a stage where you cannot work at your occupation right now, at least not on a full-time basis, disability benefits can help you through to another phase you may well reach – a time when you discover other interests and skills that fit better with the reality of your illness and allow you to return to work.

If you’ve been injured and it’s lasted more than a year and shows no sign of getting better soon, disability benefits can help you through difficult times until you’re able to resume your past or new work. And yes, in some cases, when you are not likely to ever return to work, disability benefits are your right.

Consider this – President Harry Truman, no bleeding-heart liberal, said of Social Security disability:

“It has long been recognized as an inescapable obligation of a democratic society to provide for every individual some measure of basic protection from hardship and want caused by factors beyond his control.”

If you are eligible for Title II, the Social Security Disability Insurance program, it’s because you’ve worked consistently and, by the way, you’ve paid into the system every time you’ve received a paycheck. If the benefits you’re eligible for are under Title XVI, Supplemental Security Income, there’s no shame in that. You’re in good company with people who, for various reasons, don’t have enough of a work history for the Title II program. Maybe they are mothers who have raised kids rather than been in the workforce. Maybe they are too young to have amassed the necessary work history. Maybe they are veterans who suffered an injury in service and haven’t worked since then.

Probably you’ve heard that it’s a long and frustrating process. There’s some truth to that but not enough that you should fail to exercise your right to access these funds. The first step is to contact the Social Security Administration and apply. The Social Security Administration (SSA) offers three ways for you to apply for Social Security disability benefits: by telephone (1-800-772-1213), in person at a local Social Security office, or online at www.socialsecurity.gov/applyfordisability/.

If you get turned down the first time (and nearly two-thirds of applicants do), don’t give up. File an appeal within the time period allowed. Get a lawyer to help you. Keep trying until you get to the hearing stage because this is the stage when many folks finally get a positive decision. And keep seeing your doctor – the evidence of your regular visits and the relationship you are building with your doctor will prove invaluable when your hearing date finally arrives.

Remember that the Social Security disability program was set up for the situation you are facing. President Clinton said it best:

“Social Security. . . reflects some of our deepest values–the duties we owe to our parents, the duties we owe to each other when we’re differently situated in life, the duties we owe to our children and our grandchildren. Indeed, it reflects our determination to move forward across generations and across the income divides in our country, as one America.”– William J. Clinton, February 9, 1998

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Cheryl Coon exclusively focuses her law practice on social security disability at all stages of the process, representing clients from Eugene, Oregon to Vancouver, Washington. She can be reached at ccoon@stc-law.com. Her law firm, Swanson Thomas and Coon, can be found at www.stc-law.com.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

As this network’s coordinator, I work at making connections with local professionals who focus on topics and issues I hear about most frequently from the MLWT community.  Recently, I received a comment recommending that I enlist the expertise of an attorney to contribute posts here regarding disability benefits.  I have met with Cheryl personally, as I do with many of the local professionals I have as guests, and must say that between her professional experience in this arena and her personal experience getting through the health care maze and building a supportive community for parents before social media, I believe she will be a great resource here.  As with any of my guests, please recognize that everyone must be their own best advocate and my guests are merely the people I wish to introduce to you~ not necessarily to endorse.

My friend Jo-Ann has graciously offered her experience with us today~

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

My Lyme Disease Story

The tick bite

A little over 9 years ago I was bit by a deer tick. It was in me less than 24 hours, most likely less than 12. I had no “bull’s-eye” rash at the bite site. It wasn’t until weeks later that I started having symptoms.

At first it was my right ankle. It swelled up and hurt to put any weight on it. I went to the emergency room where the doctors took X-rays and determined that I had not broken anything. They surmised that I must have sprained my ankle even though I had no recollection of any trauma to my ankle. I hadn’t twisted it or dropped anything on it. There was no logical reason that my ankle was hurting. The doctor at the ER sent me home with an air cast and anti-inflammatory medication and told me to elevate my leg.

After several weeks, the pain in my ankle did ease up, but it was replaced with pain and swelling in the opposite knee. Again, I could not imagine why it hurt so much, and was sent home from the doctor with anti-inflammatory medication and no real explanation for the problem.

By the time the pain in my knee eased up, my wrists had started to swell. I couldn’t imagine what the heck was going on with my body. I walked around with wrist guards on for several weeks thinking it must be carpal tunnel from all the typing I had been doing. Around this time, Eric said to me, “Maybe it’s Lyme Disease. You were bit by a tick a couple of months ago; maybe you should go for a test.”

Lyme disease was the furthest thing from my mind at the time, but it did make sense.  The symptoms kept moving from place to place and it really couldn’t hurt to be tested.

I went to the local Urgent Care Center to get a quick Lyme test. The doctor there was nice and efficient, and told me they would call me with the test results. A few days later the doctor called me to say that I had tested positive for Lyme disease and that he was calling in a prescription for Zithromax. He told me that I should feel better in a couple of weeks.

At the end of week two I was back at the Urgent Care Center.  Not only were my wrists swollen, but now my ankles and feet were swelling as well.  The doctor ordered another round of Zithromax and told me to come back if I wasn’t feeling any better.  Two weeks later I was back.

At this point the doctor said to me that this was beyond his level of expertise.  He said that he could send me to an infectious disease specialist or a rheumatologist.  He felt that the rheumatologist was the best choice because he could treat me for Lyme disease or anything else that was causing all this joint swelling.  He set up the appointment for me and sent me on my way.

Had I known then what I know now, I never would have gone to the appointment.

My first visit with the rheumatologist

The rheumatologist was a nice man with very good credentials. He worked with Brown Medical School, teaching our future rheumatologist. He frequently gave speeches and workshops for the Arthritis Foundation.

He listened to my story and took my medical history. It is important to mention that the interview process ended when I told him my mother was diagnosed with rheumatoid arthritis (RA) when I was 10 years old. He then examined me and told me that he thought that I had rheumatoid arthritis. I protested because all my problems started with Lyme disease, and I wanted to know he was sure it was RA and not Lyme. He said was that he wanted to do some more testing but he was fairly certain that it was RA that was causing all the swelling. He told me that we needed to do something about the swelling before it caused more damage and he prescribed Prednisone. He told me I would feel better.  He gave me slips for blood work and told me he wanted to see me in 2 weeks.

When I went back to the rheumatologist, he told me that the test results showed that I had rheumatoid arthritis and that it must have been a false positive Lyme test. When I again questioned the fact that the Lyme test had come back positive and that all these symptoms had started after a tick bite, he said that it was just a coincidence that the symptoms appeared then. I wasn’t completely convinced that I had RA, but I was feeling better and I had been in such pain before… So I decided to give him a try and see what happened. I mean he was the expert, what did I know?

Over the next several years I was treated with steroid injections, steroid pills, and Methotrexate at increasingly higher levels. I was told to be patient that getting the right medication can take time. Every time I brought up Lyme disease I was shot down. He was more convinced than ever that I had RA even though I was not improving much on the Methotrexate.  He suggested that I try biologics to get some relief, and, I don’t know why, but that was it for me. I fought him on it. I didn’t want to assault my body with any harsher medication.  After several disagreements on the subject over the next couple of months, I decided it was time for me to take a break from this rheumatologist.

I wasn’t sure what to do next, so I started weaning myself off of the Methotrexate. I didn’t really know what it felt like to be off of the stuff. I didn’t want to shock my system and go completely off the drug, so each week I would take one less pill until I had weaned myself completely off the drug.

It took a while, but the symptoms returned. My legs looked like tree trunks and my wrists were pretty bad too. I knew I had to do something, but at this point, I wasn’t sure who to turn to. I tried a different rheumatologist and left his office in tears. He was good friends with the rheumatologist I had left and couldn’t understand why I was looking for a new doctor. Finally I found a rheumatologist that was supposed to be a Lyme specialist. I thought that this was the solution I had been looking for.

This new doctor requested all my medical records before I could schedule my first appointment. She wanted me there 20 minutes before my scheduled appointment so that I could fill out all the medical history forms. She went over everything with me and asked a lot of questions. She agreed with the first rheumatologist, that I had RA, and she mentioned that she had had some luck with patients on Plaquenil.

I figured that if this doctor who was supposed to be a Lyme specialist felt that I had RA, then I must have rheumatoid arthritis. And so I did what the doctor told me and took what the doctor said to and I did see some improvement after adding the Plaquenil to my medication cocktail.

I think that it is important to note that during the time I was seeing these rheumatologists, I also had a primary care physician that was aware of all of this. She also treated me for other unusual symptoms that I would have from time to time. I was told I had acid reflux and prescribed medication. I was told I had migraines, even though my symptoms were sensitivity to light and sound with no pain. The constant ringing in my ears I was told must be from anti-inflammatory medications. The extreme fatigue was blamed on RA.

The events of last summer changed everything

On the third of July our youngest son contracted the H1N1 virus. Because I was taking immunosuppressing drugs, I needed to stop taking them immediately and start taking anti-viral medication for 3 weeks to make sure that I did not contract the swine flu. Shortly after completing the Tamiflu, I came down with a bad case of bronchitis and was put on antibiotics and was told to stay off my immunosuppressing medication. I was told to continue taking the Plaquenil. I no sooner finished the antibiotics when H1N1 struck again at my house and I was back on antiviral medication. And to top it all off, again I got bit by a deer tick and tested positive for Lyme disease. The doctor put me on Doxycycline for 6 weeks because of my compromised immune system.

This bout of Lyme disease was like no other that I had ever experienced. Three weeks into treatment the symptoms got incredibly worse. I thought I was dying. When I called the doctor she didn’t seem to know why I was feeling so bad but insisted that I continue the doxycycline. I did what I was told and the symptoms did improve. When I finished the antibiotics I was told to start taking the immunosuppressing drugs again. Being the dutiful patient, I did as I was told. Within a week of starting the methotrexate, the Lyme symptoms came back with a vengeance. I scheduled an appointment with the rheumatologist.  She took one look at me and knew that I was sick. I told her I thought it was Lyme disease. She ordered a new Lyme test and a battery of other tests as well.

About a week later, my primary care physician’s office called to let me know that I had a positive Lyme test and wanted to confirm that I was being treated for Lyme disease. I was confused. Why didn’t the rheumatologist call and get me on antibiotics?

I called the rheumatologist office and asked for an explanation. The doctor told me that I did not have Lyme disease. I wanted to know why the other doctor thought that the test results were positive. And here is when I started to get really nervous. She said that she didn’t expect those results. She said that it could not be Lyme disease; it must be a cross reactive protein. I then wanted to know why I was experiencing the same symptoms that I had when she told me I had Lyme disease. It didn’t make sense. I felt like I had Lyme disease and I had a positive Western Blot. It didn’t seem complicated at all.

She wanted to do some more testing and I agreed. She said Lyme disease likes to hide out in a certain part of your brain and so she ordered an MRI. I was tested for everything under that sun and the only thing that came back positive was Lyme disease.

Because the rheumatologist was in my opinion trying to prove that I did not have Lyme, I went to my primary care physician and asked her what she thought.  She said that she thought that there was no harm in putting me back on Doxycycline and if I felt better than more than likely I had Lyme disease. If I didn’t feel any better than it probably wasn’t Lyme. That made sense to me.

I started a new course of Doxycycline and not only did the Lyme symptoms get better but the swelling in my joints that had been bothering me for the past 8 plus years disappeared. I was walking without a limp. I actually had a sashay to my step. One day I was going about my normal daily activity and it hit me. It stopped me dead in my tracks. This is what I felt like before; before the rheumatologist, before Methotrexate, before the tick bite that changed everything.

I began to cry. At this point I was sure that I had had Lyme disease all along. It made sense. I had been off the medication that was supposed to fix my joint pain and swelling and it was replaced by antibiotics that have taken away all my symptoms.

I had an appointment with the rheumatologist. She wanted more testing and if they did not come up with a solution, she wanted to do a lumbar puncture. Logic did not seem to be working with the woman. To be honest every time I brought up Lyme disease she looked scared, especially when I suggested that I never had RA in the first place.

I decided that I was no longer going to go back to the rheumatologist and I needed to find a doctor that knew something about Lyme disease. I spent months doing research about Lyme and rheumatoid arthritis. I learned that I needed a Lyme Literate MD (LLMD) and I asked anyone and everyone if they had some advice on how to find a doctor. I took all the information that I had gathered and narrow it down to 2 doctors and then I did something I should have done from the very beginning. I trusted my instincts.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Post-script:

By the time I was able to find a Lyme literate MD, I could no longer walk without help.  I spent all my time in bed. I could not roll over in bed without help. I was in constant pain. I truly thought I would die before I made it to this doctor. Not only were my joints swollen but my legs and face were swelling as well .My body had begun to twitch. I was really scared.

Within a few months on antibiotics the inflammation in my body had been reduced by half and I knew that we were on the right track. I am now 8 months into treatment. It has not been easy and because I spent so much time on immuno-suppressant drugs it will be a long hard battle. The drugs that suppressed my immune systems made it easier for the Lyme bacteria to become entrenched in my system. However right now I am able to walk without help, the pain I was experiencing has been reduced by half and I am on my way to a healthy life once again.

The most important lesson I have learned during this whole experience is that I should always trust my instincts. I didn’t before and I will never make that mistake again.

I hope this post will help others.  As of today I have been contacted either on LivingRheum.com or LymeWarriors.com or by email by almost 70 people who have stories similar to mine. The more information out there the better.