Friday, May 28, 2010

On the Tip of My Tongue...

Have you ever had one of those days or weeks where you just can't grasp the right word.  It just hovers there...on the tip of your tongue.

I have been struggling with a few words this week.  Trying to remember them since Wednesday.  With the vasculitis in my head combined with the lupus fog and mehbeh a leak, I am not quite on my best game.

So, I should know what this soft, cylindrical item is.  I do....but I don't.  And... for some weird reason, my brain tells me its "cologne water" paper.  My friend, Mitch, helped walk me through why I was calling it that.

I described what "cologne water" was and eventually was able to tell him that it was "Eau de Toilette" ...and the light shifted in my brain and I could easily see that it was toilet paper.  I can read the words and know what it is but for some reason, my tongue won't say it at first with out a huge process.  >.<



The other word that has been elusive is my favorite animal and stuffed animal.  I collect these wonderful furry critters.  I for some reason called them "Watership Down".  The title of a wonderful book and movie regarding this adorable little creature.

Mitch helped me word associate until the word came.  BUNNY...but even then...it still wants to hop right out of my brain and remain stuck on the tip of my tongue.

I think I would prefer something better than words being stuck on the tip of my tongue.  Things like caramel or frozen custard or the wonderful buttery rich crunchy...that is really good covered in chocolate and rhymes with coffee.....DAMMIT...what is that???

Wednesday, May 26, 2010

Not my friend...

My favorite thing to tell people...  "IT'S A GREAT DAY!  THE SUN IS SHINING!!"  Even if it's raining out...the sun is still shining above the clouds.  I love the sunshine.  The feel of it against my face and on my body.  It energizes me and fills me such wonderful memories from my childhood.  Swimming...fishing...climbing trees...baseball...kickball...especially, memories of my dad. 

BUT...the sun is not my friend.  It isn't the friend of anyone with fair skin or more importantly , with lupus.  At a young age I learned to wear sunblock and to try not to get burned.  I had dark hair with reddish tones, green eyes and porcelain skin.  I burned...peeled and turned white again...usually with spots.   My dad taught me to enjoy doing so many things outside.  But he never wore sunblock, said it was for girls.  Sunblock irritated my dad's skin so he avoided it.  The sun was not his friend.  My dad died in November of 2005 from melanoma.  Something preventable.

I am more diligent because of my fair skin and lupus.  But I miss the sun and doing my gardening and yard work...fishing and swimming.  But it's not my friend.  The sun triggers my butterfly rash and my lupus.  I also burn severely because of the medications that I take.  My lupus makes the sun even more not my friend.

Today the sun shined bright and hot.  I walked outside for a few minutes.  I stopped, lifted my face to the sky and closed my eyes.  For just that moment, feeling the heat of the sun on my face...I felt my dad's presence.  "Miss you Daddy."


Saturday, May 22, 2010

Now that's a mouthful...

For many people with autoimmune disease we have more than one thing going on.  For me...I have Lupus…it is the main or primary disease I have.  But, you can have other things be secondary or overlap with it...it ends up being a mouthful when you tell people.  

For me…it’s Rheumatoid Arthritis, Sjögren’s Syndrome, Raynaud’s Phenomenon, Celiac Sprue, fibromylagia, severe allergies (to food, medications, stinging insects, and environmental), asthma, hypothyroidism, and eczema.  Now that's a mouthful to tell a new doctor.  I even had one doctor tell me it was impossible...until I showed him on the internet that it was possible.  Needless to say, that was the only time I saw that "uneducated" moron. 

Other conditions you can have are multiple sclerosis, scleroderma, myasthenia gravis, psoriaritic arthritis, diabetes, Hashimoto's Thyroiditis, polymyalgia rheumatica, Crohn's disease, Ulcerative Colitis, irritable bowel disease, dermatomyositis, and many others.

You also get things like pericarditis, endocarditis, cardiovascular disease, strokes, glomerulonephritis, pleurisy, vasculitis, optic neuritis, peripheral neuropathy, psychosis, headaches, lesions, necrosis, etc. because your immune system targets those areas because of the lupus. Or you get things because the immune system has been suppressed too much...shingles, bell's palsy, ramsey hunt, infections, and even cancer.  Other issues to worry about are what the medications do to your body...they can destroy hormone  producing glands causing early menopause, or adrenal gland failure...they can damage your liver and cause cirrhosis...the meds can trigger osteoporosis or worse avascular necrosis...they can damage your kidneys much in the same way glomerulonephritis does triggering kidney failure if the damage is severe enough.

I have done enough research to be able to hold intelligent conversations with specialists and have them ask me what my medical degree is in.  It is important to educate yourself about your disease.  You must be your biggest advocate.  My rheumatologist, immunologist, neurologist, neuro-ophthalmologist, nephrologist, family doctor and therapist, all appreciate that I learn and understand about my disease, treatments, and research studies.  It makes it easier for me to understand what they want to do and why...they know that if I question something it’s not because I am scared but because I want the truth.  I have refused some treatments and medications because of what I have learned or experienced.  We work as a team.

Now that was a mouthful. 

(For an autoimmune disease glossary of terms…please go to http://www.wrongdiagnosis.com/a/ai/glossary.htm.)

Wednesday, May 19, 2010

BUT I WISH IT WAS....



I can’t tell you how many times I have answered someone with …“NO MY RASH IS NOT CONTAGIOUS…BUT I WISH IT WAS!!!”  I think I am getting a T-shirt with that printed on it and maybe even one that says…“WHAT DO YOU MEAN IS THAT CONTAGIOUS?  ARE YOU SAYING THERE’S SOMETHING WRONG WITH MY FACE?”

IDIOTS…most people are idiots and don’t realize what they say or do until after it is too late.  They don’t realize that people like me or someone who is dealing with a chronic illness…that we don’t have any control over things except what we try to limit in our lives.  People don't stop to think how harsh their words are or how they might be insensitive to someone with a chronic, debilitating, lifelong illness.  I fondly refer to it as “mouth & brain diarrhea” or MBD.  They open their mouths and shit flows out without their brain being engaged to stop them.

With that said…the 99% of these so-called “idiots” don’t really want or intend to hurt us…to be mean or insensitive.  They are really trying to reach out to us so that they can understand, be compassionate, but since they are ignorant of what we go through…they are clueless to know their word choice is hurtful or even demeaning to us.  Maybe the worst thing they ever experienced was a hang nail or a zit on their ass.  They do not have the same point of reference as I or anyone else who is suffering from a chronic illness.

So, here is a head’s up on what my morning’s are like…

…I wake up and I still feel exhausted.  My muscles ache.  My joints are stiff and painful…sometimes they are swollen.  My skin feels like it’s on fire.  I stretch to test the waters to see if the day is possible.  And I think to myself “Hmmm…stretched ok…time to go potty.  Let’s see how difficult it is to maneuver out of bed…woot! The EAGLE HAS LANDED!!!”  My feet made contact with the floor and I didn’t fall down.  I use the bathroom and decide to get dressed.  Bra fastened!  WOOT!  No buttons on top or on slacks.  Slide on shoes.  BOOYAH!  All dressed.  Today looks promising…

We already feel bad from what we are living with day to day.  We already feel horrible from being sick, from living with the subtle and sometimes not so subtle changes that happen day to day, even minute to minute. For me…it’s the feeling of my energy melting out of my body into the floor and then hearing someone say..."but you look normal and so healthy" to "are you sure you're sick?"...it's enough to make you want to scream and give up.  I would never wish my disease on someone else.  It would be easy to fall into the whole “WHY ME?” mentality.  I don’t.  I chose to remember that God never promised me an easy or simple life.  The question anyone who is sick needs to ask themselves and remind others is “WHY NOT ME?”  I am not better than anyone else.  I am not more important nor am I more deserving to be healthy.

That’s where this blog comes into play.  I am trying to educate the “normal, healthy people” who don’t walk in my shoes every day. So they can understand…

For me…the part that hurts the most is when people who are your family and friends who see you every day, talk to you every day…the people you know are supposed to know better...they are supposed to understand.  AND, when they don't....when they say things like…

"Stop acting crazy"
"Stop being sick"
"Stop letting yourself feel bad"
"Stop being weak"
“Suck it up”
"Stop saying you can't do something because you're too tired"
"Stop saying you can't because you hurt"
"I DON'T WANT TO DEAL WITH THIS ANYMORE."
"I CAN'T BE YOUR FRIEND BECAUSE EVENTHOUGH I SAID I UNDERSTOOD, YOU ARE TOO SICK FOR ME TO BE AROUND.” 

GUESS WHAT…NO ONE with a chronic illness wants to be sick.  We don’t wake up saying… “OH THANK GOD…I can be sick today!”

I didn't wake up today or yesterday or even all those days ago over the last 15 years of my life deciding that "OOOH...Today, I am going to be sick.  I am going to have horrible rashes, and have my kidneys be damaged.  I am going to have the lining around my heart get inflamed.  NO...Today…TODAY… I want to have my brain to be affected so that I can suffer from psychosis, seizures and even a mini stroke."  

That's right...I wanted to have this stuff happen to me.  I wanted to behave erratically, cry and feel all this pain.  I wanted to lose people around me who I love and depend on.  I want to be alone. I want to suffer alone.  I want to die alone.  I am not sure why some people think I chose this for my life…that I wanted to be sick.  I want to scream at those people and say… “I am so happy you all figured this out so I don’t have to pretend anymore.  THANK YOU.  My ruse has been discovered.  You found me out.”  AND then V-8 slap them in the forehead and say “quit being stupid”.

So…No my rash is not contagious….BUT I WISH IT WAS!  Then maybe you can live a day in my shoes and see what it was like to parcel out my physical energy…my mental energy…to decide if doing that task is worth what I will lose energy wise.  Maybe you can feel the pain I experience the moment I wake up until I go to sleep at night.  Maybe you can wear the mask I wear so no one has to see you hurting or being tired.  Maybe you can pray and trust that those who love you will still let you be yourself when you get home from work so that you can melt into the couch or bed and cry because you were superwoman at work and it was all the energy you had for the entire week…but too many people depend on you to do your job.  Too many people depend on you to do everything.  To be everything to give and give and give and give…sometimes if we actually tell you NO…it may mean that we have nothing left to give out and that last little bit you are asking for will the proverbial straw that sends us to the hospital. 

Today my answer is NO to everything.  Today…MY RASH IS CONTAGIOUS…Hope you enjoy walking in my shoes…Today…I want to be NORMAL.  I want to be FREE from pain…to not be scared….to not be sick. 

BUT YOU LOOK SO HEALTHY…“No…but I wish I was.”






Sunday, May 16, 2010

Diet, Nutrition and Lupus









Diet and Nutrition


The information contained here was compiled from many websites.  Please see my links page for all of the ones I routinely use as a resource.


There is no special diet for lupus, despite the numerous claims on the Internet and in various books and other publications. But recommendations on how diet and nutrition affect lupus seem to be few and far between despite the fact that doctors postulated more than 15 years ago that diet might be one of the possible future therapies for people with this disease.  In general, you should try to eat a nutritious, well-balanced, and varied diet that contains plenty of fresh fruits and vegetables, whole grains, moderate amounts of meats, poultry, and oily fish, as fish oil has been found to help reduce inflammation.

More research is emerging. In the review article, Amy Christine Brown, RD, PhD, an assistant professor of nutrition at the University of Hawaii at Manoa in Honolulu, reports that certain foods and nutrients may improve lupus, while others may exacerbate the disease. 

"Patients with [lupus] may benefit from a balanced diet limited in calories and fat (especially saturated and omega-6 polyunsaturated fatty acids), containing rich sources of vitamin E, vitamin A (beta carotene), selenium and calcium," she writes.  Vitamin E, vitamin A, and selenium are antioxidants and may have anti-inflammatory properties in people with lupus.  Also potentially beneficial are fish oils (which contain omega-3 fatty acids), evening primrose oil, flaxseed, a plant herb called Tripterygium wilfordii, and supplements of a weak male hormone called dehydroepiandrosterone (DHEA), Brown says.  "Stay away from zinc, which is found in meat and shellfish, especially oysters," Brown tells WebMD. "It enhances immune response, and you don't want to help an immune system fight itself."

Omega-3 fatty acids found in oily fish appear to decrease the risk of coronary artery disease and may also protect against irregular heartbeats and help lower blood pressure. For these reasons, omega-3 fatty acids are important for women with lupus, who are at a 5-10-fold higher risk for heart disease than the general population.  One food for people with lupus to avoid is alfalfa. Alfalfa tablets have been associated with reports of a lupus-like syndrome or lupus flares. The lupus-like effects may include muscle pain, fatigue, abnormal blood test results, changes in how the immune system functions, and kidney problems. These reactions may be due to the amino acid L-canavanine (found in alfalfa seeds and sprouts, but not in leaves), which can activate the immune system and increase inflammation. I can tell you from firsthand experience that alfalfa sprouts trigger lupus flares.  My butterfly rash gets much worse and my fatigue levels go way up.  I love alfalfa and it’s one of the few foods I am not allergic to…here I go again, alluding to my allergies.  People with lupus should limit fat intake to less than 30% of total calories, and may want to avoid substances rich in omega-6 fatty acids including safflower oil, sunflower oil, poppy seed oil, and corn oil, because these fats may exacerbate the disease.  But the omega-3 fatty acids contained in the oils of several fish varieties, including mackerel, tuna, whitefish, and herring, may slow the disease and have an anti-inflammatory effect.

If you plan to add herbs, dietary supplements, or vitamins to your diet you should first discuss your decision with your lupus doctor. This is especially important as herbs or supplements may interact with medicines used to treat lupus. Herbs or supplements should never be used to replace medicines prescribed to control symptoms of lupus or medication side effects.  Many of us suffer from depression due to living with a chronic illness for so long and when my disease is affecting my brain.  My rheumatologist has put me on Paxil and Wellbuterin to treat the issues.  Some people may think they can add St. John’s Wort to the mix.  DON’T!  If you take this supplement, it can kill you with drug interactions. So, please check with your doctor and your pharmacist.  My pharmacist is amazing.  I have had the same pharmacy for nearly 10 years.  They catch the interactions my doctor’s may miss.  I take quite a few medications…like thirteen.  You may have to cut back or eliminate certain items from your diet because of the medications you are taking, or because of the damage that lupus has done to certain parts of your body.  Future studies may look at the use of bromelain, a complex of enzymes found in pineapples, to more clearly define any potential anti-inflammatory effect. Boxers use bromelain as an anti-inflammatory agent, and it could prove to be interesting to study if it has such an effect in people with inflammatory conditions.  Bromelain is used by many as a supplement to aid in digestion.  Its enzymes help breakdown food.  I find it has helped in the past when eating protein rich food.
·          
There has been one large study of dietary factors in relation to lupus disease activity. In this study of 216 lupus patients in Japan conducted by Yuko Minami, M.D., there was no association found between intake of total fat, type of fat, or omega-3 fatty acids and subsequent disease activity over a four-year period. However, higher intakes of antioxidants (for example, vitamins C and E) were associated with decreased disease activity. Thus, although currently available studies suggest that diets high in antioxidants -- and possibly omega-3 fatty acids -- may help lupus symptoms, this is still an unanswered question. The role of antioxidants in disease progression and activity is a relatively under-studied area of research. It is important to discuss any major change in your diet, especially changes that include use of dietary supplements, with your doctor. There may be potential interactions with prescribed medications or other aspects of your care that are important for your physician to evaluate.

There's no way to soften the bad news about drinking alcohol. While anyone is at risk from alcohol's negative side-effects, people who take prescription medications (and also some over-the-counter-ones) put themselves at an even greater risk of suffering health troubles.   The problems occur because alcohol can change the way the body uses, or metabolizes, certain medications. Alcohol is absorbed through the intestinal tract and shuttled to the liver, where chemical "knives" called enzymes break it into smaller molecules. Trouble is, alcohol causes the body to make more of these enzymes, especially when someone drinks regularly (even so-called "social" amounts of alcohol). Some of these enzymes are the same "knives" that break down medications so the body can use them. In producing more enzymes, the liver metabolizes medications faster. The bottom line: medications are sent into the bloodstream much faster and to a larger extent than when you don't drink. This can be dangerous, intensifying both the positive and negative side-effects of medications. 

It is a myth that you can avoid these alcohol medication side-effects by taking medications while you are not drinking: the liver is still in "over-drive," producing more of these enzymes for some time after you drink. Another myth: "You have to drink hard liquor to suffer dangerous consequences." Beer and wine are just as likely to cause problems.  Of the 50 most frequently prescribed drugs, more than half contain ingredients that react adversely with alcohol. Among the negative effects are seizures, headaches, nausea, vomiting, mental confusion and coma. Don't forget that medications that are available without a prescription can also react adversely with alcohol. People with lupus, for example, often take Tylenol to alleviate pain. Drinking any amount of alcohol can cause Tylenol to be toxic to the liver at much smaller doses. Alcohol mixed with aspirin can lead to bleeding in the stomach. If you are taking methotrexate or other immunosuppressive medications, drinking greatly increases the chance that you will suffer liver damage. 

Anyone with a chronic disease like lupus needs even better nutrition to also fight the chronic disease. Alcohol interferes with good nutrition in a couple of ways. Alcohol causes the body to waste some nutrients, basically by burning them up at a faster rate. In addition, the body's first priority is to metabolize or use alcohol, rather than the type of calories a person (especially teenagers) needs to grow. Anyone with lupus should avoid alcohol, particularly when taking medications, or restrict their alcohol intake as much as possible. 
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·        Corticosteroids can elevate blood pressure and the levels of cholesterol and lipids in the blood. Therefore, if you are taking steroids, you should limit the fat and salt in your diet, as both can contribute to these conditions.  Corticosteroids also can cause or worsen osteoporosis, a disease in which bones become fragile and more likely to break.  If you have osteoporosis you should eat foods rich in calcium every day to help with bone growth: examples are dark green, leafy vegetables (spinach, broccoli, collard greens), milk, cheese, and yogurt or calcium supplements that contain Vitamin D.
·          
At this time, there is no specific lupus diet. Most people with lupus do not require special diets. It is important to maintain a nutritionally sound and well balanced diet. A proper diet ensures that we consume all of the necessary vitamins, minerals, and supplements. However, if your doctor feels it would be helpful for you, it may be suggested that you try a reducing diet, salt free diet, or low protein diet or combination of the three. If you have kidney involvement, a salt free low protein diet may be helpful in minimizing water retention.  If you are experiencing fluid retention that causes swelling (edema), you should lower the amount of salt and sodium-containing foods you eat; in particular, processed foods should be avoided.  A healthy intake of vitamins and minerals is important for everybody. If you eat a good variety of nutritious foods to include fresh fruits and vegetables, fiber rich cereals and grains, and lean cuts of meat then you are probably getting all of the vitamins and minerals you need to be healthy. There's little scientific evidence to prove that taking in extra amount of micronutrients such as through supplementation, can help improve your lupus.

One thing I can tell you, if your insurance will cover it, find a good nutritionist or registered dietician.  They can be invaluable in helping you come up with a well balanced eating regimen.  As I have mentioned, I have a lot of allergies.  I will blog about the whole “I’m allergic to everything” more fully in a later post…I will address the issues I am facing with my so-called “diet”.  It’s easier to tell you the foods I am not allergic to than to tell you the ones I am not.

1.    Turkey
2.    Pork
3.    Apples
4.    Pears
5.    Vanilla
6.    Brussel Sprouts
7.    Celery
8.    Onion/Scallion/Leek
9.    Garlic
10. Iceburg Lettuce
11. Corn
12. Rice
13. Cabbage/Rutabaga
14. Potatoes/Yams
15. Grapes
16. Avocado
17. Pumpkin seeds (not the pumpkin…just the seed)
18. Sunflower seeds
19. Alfalfa Sprouts (and not really because of the triggering a lupus flare)

In 2004, I became allergic to all nuts (peanuts, walnuts, pecans, cashews, brazil, hazel, pistachio, pine, macadamia), eggs, wheat/gluten, shellfish, ocean fish).  Just this year, I lost pretty much all the rest of the food.  My immune system is being aggressive all the way around…not just with the lupus.  And I realize that what really should be the diagnosis for my disease is “hyperactive immune system” … because that would explain everything… my overlapping arthritis issues (Lupus, Rheumatoid Arthritis, Sjögren’s Syndrome, Raynaud’s Phenomenon)…my Hashimoto’s Thyroiditis…my celiac sprue…my allergies & asthma…literally EVERYTHING.  But alas…they don’t see that all encompassing diagnosis as a benefit.  How do you treat something that is hyperactive if you can’t get at the entire system to “remove” or kill off part of it….kind of like how they treat for thyroid issues.  I know that there are studies underway looking at how Lupus and allergies maybe more closely linked than currently thought.

Anyway…I am happy not eating a lot…the meds I take make me nauseous anyway and eating just gives my stomach a reason to churn and rumble.  

Saturday, May 15, 2010

Prognosis for those with Lupus




Lupus…well, Systemic lupus erythematosus, is considered one of the most serious rheumatic diseases. Lupus can affect so many organs that a cause of death in some people with lupus may not be directly attributed to the condition. One of the primary causes of death among patients with lupus is atherosclerosis, a disease of the coronary blood vessels resulting from accelerated buildup of plaque leading to stroke or heart attack.  Infections followed by kidney failure are some other causes of death in patients with lupus.  So…it’s the complications that kill not typically just the lupus. 

Lupus is unpredictable and varies greatly form one individual to the next, which is also what makes it so hard to diagnose.  So, what is true for one lupus patient may not hold true for another.  It tends to be chronic and relapsing, often with symptom-free periods that can last for years. Flare-ups can be triggered by sun exposure, stress, infection, surgery, or pregnancy. Flare-ups occur less often after menopause which also point to hormones having some type of contributing factor. Because many people are being diagnosed earlier than in the past and because better treatment is available, the prognosis has improved markedly over the last two decades. However, because the course of lupus is unpredictable, the prognosis varies widely. If the initial inflammation is controlled, generally, the long-term prognosis is good. Early detection and treatment of kidney damage and atherosclerosis can help reduce the incidence of complications related to those problems.

Mild lupus. About 20 - 30% of cases are mild. The only symptoms may be the skin rashes of discoid lupus erythematosus (DLE) or subacute cutaneous lupus erythematosus (SCLE) with or without joint aches. The number and intensity of symptoms in mild cases often decrease over time, as does the likelihood of major organ involvement. Patients with mild lupus should still be tested for organ involvement.

Widespread lupus. More commonly, lupus is a moderate to severe, chronic, life-long disease, alternating between periods of symptom relapse, (called flares), and remission. The disease may begin in any of the various systems of the body and progress unpredictably to others. The following are typical patterns:

v  Symptom relapses, or flares, occur on the average of two or three times a year and their duration is unpredictable.  Sometimes, flares last years.
v  Between flares, most patients with lupus function at about 90% of normal capacity.

The degree of severity depends on different factors:

v  Severity of the inflammatory response
v  Frequency of episodes
v  How well you respond to medications and treatment
v  The degree of organ or system involvement

Because of more effective and aggressive treatment, the prognosis for LUPUS has improved markedly over the past two decades. Treatment early in the course of the illness improves long-term progress. About 85 - 95% of people with lupus survive 10 years, and many people have a normal life span. Lupus that develops later in life is generally less serious than lupus that strikes in childhood or young adulthood.  I was twenty-nine when my lupus developed even though diagnosis didn’t come until I was thirty-seven.  Although some people with lupus have severe recurrent attacks and are frequently hospitalized, most people with lupus rarely require hospitalization. There are many lupus patients who never have to be hospitalized, especially if they are careful and follow their physician's instructions.  New research brings unexpected findings each year. The progress made in treatment and diagnosis during the last decade has been greater than that made over the past 100 years. It is therefore a sensible idea to maintain control of a disease that tomorrow may be curable.


Now…for me…I have kidney involvement with some kidney damage.  I see a cardiologist every three years for stress tests to keep an eye on my heart.  There has been some cardiovascular issues, but not related to atherosclerosis…I’ve had pericarditis twice.  Generally, my lupus attacks my blood vessels in my head causing headaches…the vessels in my legs causing purpura lesions similar to the malar lesions I get on my face when the rash is out.  My joints are always affected as is my energy level.  My disease has been very active for nearly 18 months now…but I have had periods of remission in the past…they usually only last for 6 months-ish…but generally the flare would last 2 or 3 months…I am on my longest flare and not responding well to the meds…at least not yet.  My doctors are being very aggressive and I have faith in them.  They haven’t let me down yet.


Thursday, May 13, 2010

Navigating FMLA






FMLA.  What is it?  According to http://www.dol.gov/dol/topic/benefits-leave/fmla.htm...

"The Family and Medical Leave Act (FMLA) provides certain employees with up to 12 weeks of unpaid, job-protected leave per year. It also requires that their group health benefits be maintained during the leave.

FMLA is designed to help employees balance their work and family responsibilities by allowing them to take reasonable unpaid leave for certain family and medical reasons. It also seeks to accommodate the legitimate interests of employers and promote equal employment opportunity for men and women.

FMLA applies to all public agencies, all public and private elementary and secondary schools, and companies with 50 or more employees. These employers must provide an eligible employee with up to 12 weeks of unpaid leave each year for any of the following reasons:

v  for the birth and care of the newborn child of an employee;
v  for placement with the employee of a child for adoption or foster care;
v  to care for an immediate family member (spouse, child, or parent) with a serious health condition; or
v  to take medical leave when the employee is unable to work because of a serious health condition.

Employees are eligible for leave if they have worked for their employer at least 12 months, at least 1,250 hours over the past 12 months, and work at a location where the company employs 50 or more employees within 75 miles. Whether an employee has worked the minimum 1,250 hours of service is determined according to FLSA principles for determining compensable hours or work.

Time taken off work due to pregnancy complications can be counted against the 12 weeks of family and medical leave.
A final rule effective on January 16, 2009, updates the FMLA regulations to implement new military family leave entitlements enacted under the National Defense Authorization Act for FY 2008.

Special rules apply to employees of local education agencies. The Department of Labor administers FMLA; however, the Office of Personnel Management (OPM) administers FMLA for most federal employees." 

There are many rules and regulations which are complex and confusing especially with the changes that went into effect last year. (see http://www.dol.gov/federalregister/PdfDisplay.aspx?DocId=21763 for a detailed list of the changes.)

Basically, if you see a doctor at least twice a year and get prescription medications, you need to have an FMLA document on file. Your employer will ask you to fill out some FMLA paperwork...be sure to be prepared to pay your doctor for completing the forms...some ask for fees...anywhere from $10 to $100.  It's ridiculous....but it's the only way.  You have 15 days from notifying your employer to turn in the medical certification.  In my case, my FMLA is considered intermittent and will cover me throughout the calendar year.  I have three on file with my employer.  One from my neurologist, my immunologist and my rheumatologist...it's been a long road to get here.

Your employer cannot penalize you in any way for missing work.  If they do, then they violate the FMLA and can be heavily penalized.  Sometimes, employers will even try to find legitimate ways to fire you so they can bypass the FMLA protection.

I am not an expert, but my husband is an attorney and he pushes me to know my rights under the law.  If there is ever a question about things, contact the Department of Labor and they will steer you to your local Wages Division for assistance.

It's scary to have to do this, but the new guidelines and regulations require that FMLA be filed or you can be denied the right to use your own sick time or vacation time to cover your absence.  And...it could impact your job.


Tuesday, May 11, 2010

Coping Strategies

How do I cope with my lupus?  That's a good question.  Most of the time, I manage very well.  I have a strong support system with my family, friends and faith.  But I am not going to kid you, there are days when I just want to hide and cry.  Every day I get up and there is the ever present pain...the draining and exhausting fatigue...and there is also the love and strength.

I talk to my friends on Facebook about this stuff. I talk to my husband and my kids.  I share things with my doctors and my therapist.  My work is supportive.  But..sometimes its the scared or disgusted look of someone I don't know when they see my butterfly rash...my "scarlet letter"...and it makes me feel like a sideshow freak.  They cringe and pull back as if I have the plague and they will catch my lupus from me.  I am an outgoing, warm, funny woman person who loves engaging people.  I thrive on human contact.

When the pain is at its worst, many lupus patients take pain medications like codiene, darvocet, any type of narcotic.  I am allergic to many of those.  I am also allergic to NSAIDS...aspirin, ibuprofen, naprosyn...and acetaminophen doesn't work.  More importantly, I hate taking medications that make me loopy or dopey.  I prefer to use visualization and bio-feed back to help me achieve a meditative state...I called it my "sunny beach".  Most of the time this works beautifully. On those rare occasions that I can't work through the pain or it's too intense for me to focus through, I seek help.

My husband, Keith, has problems dealing with my pain.  It is devastating to him to see me suffering and he needs breaks from dealing with all the intense emotions and stress...we all do.  He has been very supportive and he does his best to help.  I am blessed to have him in my life.  Many husbands would have left because of this.

I can remember a night last year when the pain was so overwhelming that I could barely breathe let alone focus on my "sunny beach".  Keith, was out of town at a legal seminar, while I was doing a round of  IV Solumedrol.  I was feeling pretty horrible and couldn't sleep because of the pain and uber steroids.  My friend, Mitch, stayed up on Skype talking to me while I vomited and cried from the pain.  He told me jokes and sent me hilarious pages from Stumbleupon.  It was like three in the morning when he finally asked me what I needed.  I told him that I didn't want pain meds and he asked me why I wasn't using the visualization.  I sobbed that it wasn't working.  So he proceeded to repeat to me my "sunny beach"...something he and my family had heard me say many times over.

...lush green forest opening out onto a lagoon
...the delicate white sand sparkled in the sunshine
...each grain was warm between my toes as I scrunched my feet into the sand
...the sand became denser as I walked toward the water
...the sand and the water were melded and I could feel the coolness of the lagoon pulling me in
...as I sunk into the vibrant aqua colored water its gentle motion rocked my body
...the water is clear and I can see all the beautiful fish and coral
...I keep sinking deeper letting the coolness of the water and the darkness wash over me
...finally its a deep indigo blue and I am wrapped in the coolness...protected...at peace.

Mitch talked me through that and I was able to focus on his voice and the words and it helped.  It got me through the pain and I could finally sleep.  He stayed up all night with me on Skype...just talking quietly when ever I would start to wake up.  He saved my life that night.

God puts people in our lives for many reasons.  He sends angels to us in many forms.  Find ways to cope.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_learncoping.aspx?articleid=2258&zoneid=528

Monday, May 10, 2010

When you get sick while being sick with Lupus...

Sometimes you get sick while you are sick with lupus.  It happens.  Since I take immune suppressing medications...three of them...me getting a cold, or congested from allergies is a bad thing.  Since the immune system is suppressed, it can't stop pesky invaders or even the normal stuff we're supposed to have. Which means, the normal bacteria that we have on our skin that doesn't hurt people with healthy immune systems, can hurt me...can put me in the hospital.

The balance between normal bacteria and yeast can easily be disturbed by many medications which ever critter happens to be the stronger will win...so maybe that dry white patch on your tongue isn't just dry mouth but thrush because of your asthma medications.  Maybe the prednisone you take is enough to give the yeast an edge but the healthy bacteria is holding its own until you take antibiotics to kill off the bad bacteria...and BAM...you have a nasty yeast infection in your intestinal tract.

Today...I have 103F temp.  Coughing.  Headache.  Sinus and ear infection and scripts for an antibiotic and anti-fungal.  They are not stopping any of the immune suppressing meds hoping that the antibiotics will be enough.  If the infection doesn't get better by Friday...well then off at least one of the meds. (((FINGERS CROSSED this antibiotic works)))

Please remember others when you are sick...you never know if they can survive your common cold.

http://www.lupusmd.org/docs/body-infections_and_lupus.html

Sunday, May 9, 2010

Happy Mother's Day





Anita Renfroe is the wonderful woman behind the video and this song!
Happy Mother's Day!  Enjoy


"The Mom Song" Lyrics


Get up now
Get up now
Get up out of bed
Wash your face
Brush your teeth
Comb your sleepyhead
Here's your clothes and your shoes
Hear the words I said
Get up now! Get up and make your bed
Are you hot? Are you cold?
Are you wearing that?
Where's your books and your lunch and your homework at?
Grab your coat and gloves and your scarf and hat
Don't forget! You gotta feed the cat
Eat your breakfast, the experts tell us it's the most important meal of all
Take your vitamins so you will grow up one day to be big and tall
Please remember the orthodontist will be seeing you at 3 today
Don't forget your piano lesson is this afternoon so you must play
Don't shovel
Chew slowly
But hurry
The bus is here
Be careful
Come back here
Did you wash behind your ears?
Play outside, don't play rough, will you just play fair?
Be polite, make a friend, don't forget to share
Work it out, wait your turn, never take a dare
Get along! Don't make me come down there
Clean your room, fold your clothes, put your stuff away
Make your bed, do it now, do we have all day?
Were you born in a barn? Would you like some hay?
Can you even hear a word I say?
Answer the phone! Get off the phone!
Don't sit so close, turn it down, no texting at the table
No more computer time tonight!
Your iPod's my iPod if you don't listen up
Where are you going and with whom and what time do you think you're coming home?
Saying thank you, please, excuse me makes you welcome everywhere you roam
You'll appreciate my wisdom someday when you're older and you're grown
Can't wait till you have a couple little children of your own
You'll thank me for the counsel I gave you so willingly
But right now I thank you not to roll your eyes at me
Close your mouth when you chew, would appreciate
Take a bite maybe two of the stuff you hate
Use your fork, do not burp or I'll set you straight
Eat the food I put upon your plate
Get an A, get the door, don't get smart with me
Get a grip, get in here, I'll count to three
Get a job, get a life, get a PHD
Get a dose of,
"I don't care who started it!
You're grounded until you're 36"
Get your story straight and tell the truth for once, for heaven's sake
And if all your friends jumped off a cliff would you jump, too?
If I've said it once, I've said at least a thousand times before
That you're too old to act this way
It must be your father's DNA
Look at me when I am talking
Stand up straighter when you walk
A place for everything and everything must be in place
Stop crying or I'll give you something real to cry about
Oh!
Brush your teeth, wash your face, put your PJs on
Get in bed, get a hug, say a prayer with mom
Don't forget, I love you
And tomorrow we will do this all again because a mom's work never ends
You don't need the reason why
Because, because, because, because
I said so, I said so, I said so, I said so
I'm the mom, the mom, the mom, the mom, the mom!!
Ta da!!!