Thursday, December 22, 2011

Depression Revisited

Depression in the extreme can lead to suicide. As the young woman in this video demonstrates, suicide cuts a wide swath of destruction through the lives of those left behind.

While depression is common in RA and other autoimmune diseases, my battle with severe depression came long before my diagnosis.

This post is probably the hardest one I've ever written. While I love to write, my writing usually revolves around facts or fiction. Rarely do I write anything as deeply personal as this but I felt compelled to share my story.

My battle with depression began when I was in junior high. It had nothing to do with life circumstances or having had a bad childhood. Just the opposite. I had loving parents who were always there for me. My family was a good, decent family.


So often, when someone is depressed and commits suicide, we hear people wondering if they have been abused or unloved. In my situation, that was not the case. I was not abused and I was very loved.


People also say, "If only the kids could see this problem is temporary." For me, there were no problems that caused me to be depressed. It had nothing to do with a boy or with other kids picking on me.

I just felt inconsequential. No purpose. Useless. I felt that every breath I took was a waste of oxygen. While I had friends I ran around with and I enjoyed life in many ways, in the back of my mind there was always that thought that my life held no meaning.

In high school, the depression continued and I became suicidal. I thought about ways to kill myself but I didn't want to hurt my parents so I never followed through on any of those thoughts.

After high school, I got married. Marriage is difficult under the best circumstances but when two immature kids get married, it's impossible. As my marriage fell apart, my feelings of uselessness increased. 

I was in nursing school and working full-time trying to make a life for myself but I still felt that I was a waste of breath. During this time is when I really began to think about suicide. In my mind, I thought if I could make my death look like an accident, my parents wouldn't be as hurt. 

Late one night I drove down the interstate and decided I couldn't take my life anymore. I was going to drive straight into the pylons holding up the overpass. My parents knew I drove too fast and they would think it was just an accident. Right? They would be okay.

As I drove towards the overpass, gaining speed, A voice spoke to my heart. I knew the voice was God's. The voice told me that I wouldn't die but I would be a vegetable that my parents had to care for. For the rest of my life.

I pulled over on the shoulder and sat and cried. After all, if I was a waste of breath and a burden when I could take care of myself, how much more of a waste would I be with my parents having to tend to my every need?

During this time, I began to see that suicide would hurt those I loved the most and I began to understand that if God made me, formed me in the womb with His own hands, I could not be a waste of breath.

I recovered from my depression with God's help and the help of a wonderful, Christian counselor. He helped me see that my life did have meaning and purpose. 


If you are struggling with depression, please seek help. Reach out. There are people who care about you and would be devastated if you disappeared from their lives.

Monday, December 19, 2011

Joint Protection in RA


Joint protection in Rheumatoid Arthritis is very important to help prevent damage, preserve joint function and to manage day to day pain. RA can cause permanent damage and the affected joints cannot tolerate the pushing, pulling and stress that a healthy joint can.

It's important to move your joints through full range of motion exercises each day but use caution and do not move past the point of a tolerable stretch. Move slowly and methodically as you go through the range of motion exercises. Listen to your body. Some days you will have a greater range of motion in your joints than other days.

When using your hands, don't use movements that push your fingers toward the pinkie finger. Instead, push your hands in the other direction. When wiping a counter, for example, make a point of wiping in the direction with the little finger leading, this will push your fingers toward the thumb instead of toward the pinkie finger. Also, grip the sponge or rag losely and not with a tight grip.

Writing with a small pen or pencil for prolonged periods places stress on the finger joints. Use a fat pen or build up your pen with foam. Also, look for gel ink or other pens that have easy ink flow and require less pressure.

If you are opening a package, don't try to pull it open with your fingers, use scissors, a knife or other utensil to prevent undue stress on your joints.

Something as simple as turning a key can add to joint damage. Use a built up key or a key turner when opening locks, starting your car or locking doors.

Also avoid making tight fists. Use ergonomic handled tools and kitchen tools. Good Grips makes a line of ergonomic grips to help prevent damage to the hands. You can also use foam to build up handles on kitchen tools, yard tools, or home tools.

It's also important to use fat handled mugs or cups instead of the dainty cups with a small handle.

It's also important to carry things like laundry baskets with open hands. Hold books, plates, bowls, etc with a flat palm. When reading, if you are going to read for a prolonged period, use a book holder or rest your book on a pillow as you read.

You can also download a PDF file Here from Kleinert Institute that includes many ideas for joint protection.



Wednesday, December 7, 2011

Depression and Rheumatoid Arthritis

Depression and Rheumatoid Arthritis seem to go hand in hand. In fact, according to a research study funded by the Arthritis Foundation, a recent diagnosis of RA and the associated disability put the patient at a greater risk for developing depression. In addition, outcomes are generally worse for RA patients who suffer from depression as compared to those who do not.


 
Another study from 2008 showed that RA patients are twice as likely to experience depression but most do not discuss this with their physicians. The study showed that almost eleven percent of RA patients suffered from moderate to severe symptoms of depression but only one in five would discuss these symptoms with their physician.

While we all feel blue or sad at times. If these feelings become overwhelming or last for long periods of time then they interfere with the patent's ability to enjoy life and live a normal, active life. At this point, the patient should seek medical help for clinical depression.

Failure to seek help for depression can result in worsening of the symptoms and suicidal thoughts or attempts.

They symptoms of Depression include:
  • difficulty concentrating, remembering details, and making decisions
  • fatigue and decreased energy
  • feelings of guilt, worthlessness, and/or helplessness
  • feelings of hopelessness and/or pessimism
  • insomnia, early-morning wakefulness, or excessive sleeping
  • irritability, restlessness
  • loss of interest in activities or hobbies once pleasurable, including sex
  • overeating or appetite loss
  • persistent aches or pains, headaches, cramps, or digestive problems that do not ease even with treatment
  • persistent sad, anxious, or "empty" feelings
  • thoughts of suicide, suicide attempts
Because depression can result in death, anyone who expresses suicidal thoughts or intentions must be taken seriously. If you or someone you care about is having these feelings, seek medical attention immediately or call the suicide hotlines:
  • 1-800-SUICIDE (1-800-784-2433)
  • 1-800-273 TALK (1-800-273-8255)
  • 1-800-799-4TTY (1-800-799-4889) Deaf hotline
Warning signs of suicide may include:
  • a sudden switch from being very sad to being very calm or appearing to be happy
  • always talking or thinking about death
  • clinical depression (deep sadness, loss of interest, trouble sleeping and eating) that gets worse
  • having a "death wish," tempting fate by taking risks that could lead to death, like driving through red lights
  • losing interest in things one used to care about
  • making comments about being hopeless, helpless, or worthless
  • putting affairs in order, tying up loose ends, changing a will
  • saying things like "It would be better if I wasn't here" or "I want out"
  • talking about suicide (killing one's self)
  • visiting or calling people one cares about
Depression is not something to be embarrassed about. It is a medical problem that will not improve without help. If you are having symptoms of feeling down or blue that don't go away, talk to your physician before the depression becomes worse.

Remember, you do not have to face this alone.





Friday, December 2, 2011

Facing the Holidays with Fatigue



Rheumatoid Arthritis and the accompanying autoimmune diseases cause severe fatigue. This lack of energy is more than just feeling tired. It causes a debilitating fatigue that is often worse upon waking up from a full-night's sleep.


RA can also cause anemia, adding to the fatigue that makes daily life difficult and when when the holidays roll around, trying to complete the cooking, decorating and Christmas shopping may be overwhelming.


Some ways to cope around the holidays and everyday:

  1. Prioritize - think about which things are the most important to you and do those first.
  2. Ask for help -It's difficult for those without RA to understand the fatigue but once you explain it to them, many will be more than willing to help. Ask them to assist with specific things. If your friend is going to the store, ask her to pick up something for you while she's there. Ask family members, to help with the housework, laundry, etc.
  3. Eat a well-balanced diet - Divide your plate in half and then divide one of the sides into fourths. Half of the plate should be vegetables, one-fourth meat and one-fourth carbohydrate. For snacks, try to stick to fruits and vegetables.
  4. Exercise - It's difficult to exercise when you feel exhausted but lack of exercise creates a vicious cycle. After checking with your physician to ensure you are healthy enough to exercise, begin small, walk in place during commercials while watching TV and slowly build until you can walk around the block.
  5. Rest - Get plenty of sleep. People with RA need at least ten hours of sleep per night. An afternoon nap of thirty-minutes to one hour will help re-energize you also.
  6. Take medication - Take your medications to keep the inflammation in check. When you have increased inflammation, your fatigue will be worse.
  7. Decorating - When decorating for Christmas, don't go all out. Put out a few of your favorite things, buy a small tree and just enjoy the season without pushing yourself to the point that exhaustion overwhelms you.
  8. Meals - Allow others to cook Thanksgiving and Christmas dinners. If you choose to prepare part of the meal, have other family members bring side dishes. Or for a totally different twist, have sandwiches or finger foods. Purchasing a pre-cooked meal is another option. Many restaurants will prepare the entire dinner for you and all you must do is pick it up. Or ask a family member pick up it up.
  9. Shopping - Try cyber shopping. There are some great sites out there and many of them will even send your gifts directly to the recipient - Amazon will even gift-wrap for you.
  10. Wrapping  - instead of going all out making the packages look just perfect, opt for gift bags or have the store do the gift wrapping.
  11. Christmas Cards - If you feel the need to send Christmas cards, order pre-printed ones so you don't have to write out each one. If you order photo cards from Snapfish, you can upload your mailing list, and they will address them and send them out for you.
The main thing to remember during the holiday season, is not to over extend yourself. It's very easy to want to do all of the special things this time of year and attend all of the Christmas parties and fun functions but balancing these desires with your energy level is imperative in order to enjoy the Christmas season.

Monday, November 21, 2011

Sjogren's Syndrome

Sjogren's syndrome, more than just a dry mouth and dry eyes, is an autoimmune disease. In people with an autoimmune disease, the person's white blood cells attack healthy tissue. In the case of Sjogren's, the white cells attack the moisture producing glands.


In addition to dry mouth and eyes, Sjogren's can also affect other organs, blood vessels, the central nervous system and even increases the risk of developing lymphoma.


The symptoms of Sjogren's may include dry mouth, increased cavities, gum disease, swallowing difficulty, dry eyes with a gritty sensation leading  possible eye infections, inflammation of the airways leading to infection and even vaginal dryness and infections.


Sjogren's symptoms are not isolated to the moisture producing glands. This disease also causes extreme fatigue, joint pain, Raynaud's syndrome and an increased risk of developing lymphoma.


Since many of the symptoms of Sjogren's can mimic those of many other diseases, diagnosis is often delayed. To complicate matters, Sjogren's may occur alone, known as primary Sjogren's or in conjunction with other autoimmune disease like Rheumatoid Arthritis or Lupus.


Diagnosis involves observing clinical features of dry eyes and mouth and possibly Schirmer tear test strips to confirm reduced tear production. Salivary glands may become enlarged and feel firmer on palpation than normal glands. Salivary gland scans may also be done to detect inflammation. A salivary gland biopsy may also be done under local anesthesia.



Lab work may reveal a positive ANA (antinuclear antibodies), SS-A and SS-B antibodies (Sjogren's syndrome A and B antibodies), rheumatoid factor, thyroid antibodies and others. The sufferer may also have anemia and abnormal inflammation markers. 


Most treatment is directed at managing symptoms. Artificial tears, Restasis, lacrimal plugs are all ways to manage dry eyes. Dry mouth may be managed by increasing fluid intake, Biotene sprays and mouthwashes, and Salagen are all ways to manage oral dryness. Nasal dryness may be helped by using nasal saline sprays. If vaginal dryness is a problem, a lubricant should be used during sexual intercourse.


Additionally, hydroxychloroquine (Plaquenil) may help with fatigue, muscle and joint pains. If the patient develops vasculitis, the patient may require immunosuppressive drugs like prednisone, azathioprine or cyclophosphamide.


Prognosis for the patient with Sjogren's is usually very good but the patient must work closely with the ophthalmologist and dentist. Exceptional oral hygiene is imperative to prevent dental issues and prevention of corneal abrasions is important to promote eye health and prevent vision problems.


Thursday, November 17, 2011

Raynaud's Syndrome

People with Rheumatoid Arthritis frequently have Raynaud's syndrome. This syndrome is characterized by painful extremities when exposed to cold temperatures. 


Raynaud's, named for the identifying French physician, Maurice Raynaud, causes an interruption in blood flow to fingers and toes. Ears and nose may also be involved. When the extremity is exposed to cold or the sufferer is under stress, the blood vessels spasm. This causes the extremity to turn white then blue then bright red over the course of the attack. 


Tingling, swelling and painful throbbing are associated with the Raynaud's spasm. The attack may last from minutes to hours and in the most severe cases ulcerations may develop which can lead to infections and gangrene in the extremity.


RA sufferers develop what is known as secondary Raynaud's syndrome. Meaning, the syndrome is secondary to the Rheumatoid Arthritis.


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There is no cure for this condition and in fact, the cause of Raynaud's is unknown. While there is no cure, there are some treatments that may help with the symptoms. 


Avoiding cold temperatures, wearing gloves in cold weather and when accessing freezers, reducing stress, regular exercise, relaxation techniques and a type of medication called calcium channel blockers (frequently used for high blood pressure) may all help reduce the severity of Raynaud's spasms.


Development of ulcerations from Raynaud's can lead to gangrene in the extremity so the importance of seeking medical attention upon development of an ulceration must be stressed.









Sunday, November 6, 2011

Rheumatoid Arthritis Basics



The name, Rheumatoid arthritis, is in many ways a misnomer. RA is so much more than arthritis. It is a disease that affects the every aspect of the person who suffers from it.

RA is a chronic, autoimmune disease characterized by severe fatigue, fever, morning stiffness, swelling and pain in the joints. It can result in loss of function of the joints.
 
Autoimmune diseases are characterized by the body's immune system attacking healthy tissue. This results in a variety of symptoms such as flu-like symptoms including overall aching, muscle aches, loss of appetite, and weight loss in addition to the joint pain, stiffness and swelling.

The causes of RA are unknown but there is a genetic predisposition to developing this disease. Simply stated, it is not a directly inherited disease but the tendency to develop the disease may be inherited.

Those between the ages of thirty and fifty years old are most likely to develop RA though it can occur at any age, even in early childhood. RA affects women more often than men.

Early detection and aggressive, early treatment are key to lessening long-term joint damage. RA can begin damaging the bones within a year from the onset of symptoms.

Almost all joints of the body may be affected. RA may present differently in different people. For example, one person may present with knee involvement while another may present with hand involvement. Others, may present with a migratory arthritis. In other words, the arthritis may move from joint to joint.

RA usually develops symmetrically. If the sufferer has arthritis in one hand, the other hand will develop arthritis. In addition to arthritis, the person with RA may develop tendon involvement.

Systemic manifestations of RA are common. These include rheumatoid nodules, cardiovascular disease, anemia, chonic leg ulcers, non-Hodgkin's lymphoma, osteoporosis, Sjogren's syndrome, pulmonary complications including pleurisy and rheumatoid lung nodules, pericarditis, Raynaud's syndrome. 


FOOTNOTES
1) "Genetic Basis for Rheumatoid Arthritis." PubMed. December, 2005.


Wednesday, November 2, 2011

Faces of Rheumatoid Arthritis

Meet Peggy Piscapo - Here is her story. You can also find her story on her blog - http://raforwardmotion.blogspot.com




My life was a normal one.. Wife, Mother, Sister, Daughter and Friend.    I had a fork in the road called RA.  On July 26th I was officially diagnosed with RA.  I had been having a lot of pain and swelling for several months and couldn't figure out why... I am only 42 and "I didn't Look Sick".   I had my husband come to this visit, so he could grasp the fact that I was sick.


Sitting in the doctor's office, I saw people in wheel chairs and have "old people" shoes on.  They were all much older than me.  We were in shock when the doctor handed me 9 prescriptions.  Tons of brochures on RA drugs.  I needed a backpack to carry all the info out of the doctor's office.  My husband and I went to the car and drove to Sonic Burger... where we sat in shock...and drank cherry lime-aids.   I had to make the call to my mother to confirm that YES,  I do have RA.    Next stop was the pharmacy:


The first time I picked up my medicine from the pharmacy... nine bottles all RA drugs.  I was in shock.  I couldn't even read the labels.  I forgot to ask for easy to open caps, not child safe ones.  I had to get two pill box's to hold all the pills.  I had to have my husband write it all down on the calender.  All the drugs are very powerful.  I used to just take Advil.   Now I take cancer drugs.


Methotrexate is the first treatment doctors try to treat RA.  I heard it was an awful drug.  It causes you to be sick to your stomach and it can cause hair loss.  I was terrified to take it.  I am on my third week now, and so far so good.  I am one of the lucky ones.  Many people who take this drug get sick and lose their hair... (I am not out of the woods with the hair thing yet).


I see my life changing every moment and in every way.  I work with horses, and its physically demanding a lot of the time.  My hands hurt and swell up at any given moment.  Heck... it all hurts.  I have a handicap placard now.  I can't have my kids hold my hands any longer...it hurts to much.  My husband is afraid to hug me...due to the pain.  There is so much change, which I will share along the way..which is why I am writing this blog.  To help myself and others.  


It is not all doom and gloom.  I have found a wonderful support group online.  I have found who my closest friends are.  I look at life in a much different way now.  I am not in a hurry to get it all done now.  I have taken time to slow down and see my life and family.  I don't get as angry anymore... I let things slide off my back now.  So join me on my journey of the positives and not so positives. 





I'm Marcy Dyer. When I first got ill, I was very active. I had just obtained my black-belt in Tae Kwon Do and as a single woman, I had quite a few friends who liked to play volleyball and softball on the weekends. 


I was the type of person who couldn't sit still. My first symptom was fatigue. Severe fatigue. I remember complaining over and over to my gynecologist. He recommended several different diets but nothing helped. I saw an internist who diagnosed me with asthma and put me on steroids. 


I felt great on the steroids but after a while I starting having knee problems. A friend recommended that I see a specialist in Dallas. The specialist drew labs on me and called me a few days later. My RF was positive and he wanted me to see a rheumatologist. He referred me to Dr. Alan Duby in Dallas. Dr. Duby diagnosed me with polyinflammatory arthritis and started me on plaquenil. Over time, with multiple flares, he added medications. In addition to RA, I developed Sjogren's Syndrome which causes very dry mouth and eyes and Raynaud's Syndrome which causes spasms of the blood vessels in the hands and feet when exposed to the cold.


Thanks to my insurance changing, I had to change rheumatologists - twice. My third and current rheumatologist is the one who finally decided this was seronegative RA. My RA titer went negative after starting treatment. All of my rheumatologists have treated me aggressively and as a result, I don't have a severe joint damage as I might otherwise.


My goal is to bring awareness to RA and to educate people on this disease while living my life to the fullest. There are many things I can no longer do but I have faith that God will use me and this illness for His glory.

Tuesday, October 25, 2011

Mutiny


For those who suffer from Rheumatoid Arthritis, a mutiny overtakes their bodies. First Captain AID (Autoimmune Disease) invades and then he recruits the immune system to rebel against the body.

He sends some of the immune scurvy dogs to attack the joints. They run to any joint they can find and pull out miniature jackhammers and begin hammering away at the joint until they have destroyed it leaving the person in pain with joints that no longer function correctly.

Next he sends some of his minions out to search and seize every vestige of energy they can find. They scour the body and hunt for any signs of energy then when they find the tiniest bit, the lock it down and throw it overboard. With no energy, fighting this nasty pirate becomes even harder.

Captain AID isn't happy with just stealing energy and destroying joints so he sends out more of his team to suck up and destroy blood cells leaving the body anemic and even more tired. 

Sometimes the old Captain decides joint damage isn't enough and he sends the mutinous team to the heart, lungs, eyes, and even ears causing even more damage.

As if this isn't enough, Captain AID often calls in his pals, Captain Sjogren and Captain Raynaud, to wreak their havoc on the body.

Captain Sjogren sends his crew to tap dance in the joints. They jump in right next to AID's crew so one team jackhammers and the other tap dances. 

Next Captain Sjogren sends part of his crew to all of the moisture producing glands to stop them up. This leaves the eyes gritty and sandy feeling and can cause corneal abrasions. His havoc doesn't stop there, when he blocks the salivary glands, the mouth becomes as dry as a desert wind.

Captain Raynaud joins the fight. He causes vasospasms in the hands, feet, ears, nose and even nipples. The vasospasms result in very cold extremities and color changes. The extremities can become numb and tingle. In extreme cases, the extremities can ulcerate.

Once the mutiny is identified, we enlist the help of Captain Rheum. He gives us the guns to fight this mutinous crew. We bombard them with guns like Prednisone, Methotrexate, Arava, Remicaide, Enbrel, Humira just to name a few. 

Using these big guns exhausts the body even more but they are necessary so we continue to fight the fight and use the big guns so we can prevent even further damage from the Captain and his minions. 

Friday, October 21, 2011

These Hands.....

Our hands are in constant motion. They draw, paint, write, type, touch, feel and even express love. But for someone with RA, those 
Courtesy luigi diamanti
hands may become stiff, red, inflamed and painful. At times, they may "lock-up".

We've all seen someone with advanced RA damage in the hands causing severe deformities but what about those who live with RA day to day? It's not always easy to recognize "RA hands".  In fact very often the person with RA hears, "but you don't look sick" or even from the medical community "I don't see any signs of RA in your hands."

Someone who is on aggressive treatment for their disease, may not have obvious damage. I asked several of my friends who suffer from RA to send me pictures of their hands. Some of the pictures are of the same hands on different days but they are all photos of hands affected by RA.

 No severe deformity but notice the red knuckles on the fingers and across the top of the hand. You can also see swelling in those knuckles.







This hand also doesn't have the severe damage that we often associate with RA and in this photo there is not a lot of redness but notice the swelling across the knuckles at the top of the hand.

This hand shows some curving of the fingers toward the outside of the hand and it shows some swelling.




This hand shows some curvature toward the outside of the hand and the pinkie finger doesn't straighten. There is also some swelling across the knuckles and a little bit of redness.










 This hand shows some deformity in the thumb. Notice how it curves outward. Also the pinkie finger doesn't straighten. It also shows some swelling at the knuckles but not a lot of redness.






 This hand has some redness and in joints and swelling in the knuckles.
 Slight redness and some swelling in the fingers and hands.

 Some slight curving in the fingers, mild swelling and slight redness.
 Beginning deformity in pinkie finger.
 Mild swelling, redness and some curvature.
 Swelling in some of the knuckles
 Some curvature toward the outside - not much redness or swelling
 Swelling and redness in all of the knuckles and the top of the hand.
Swelling and redness with some curvature of the fingers.
 These photographs depict real patients living with the day to day pain of rheumatoid arthritis. None of these patients show signs of extensive deformity caused by the RA but that doesn't lessen the pain and decreased ability associated with the disease.

The redness and swelling depicted is an indicator of inflammation. When the hands are inflamed, they are painful, stiff and difficult to use. The inflammation is a sign of joint damage. This damage can lead to the gnarled hands that don't function.

Hand involvement is only a small part of the damage this disease does. It affects not only joints but also the heart, lungs, eyes, hearing, ribs, blood vessels, and blood cells.

While the person suffering from RA may not "look sick", he is. RA is an autoimmune disease that affects every aspect of the sufferer's life.