Thursday, February 28, 2013

Highs -n- Lows Living with the Disease

Thursday, February 28th

Continuing my search for information...
Although DM causes pain and weakness, it is not necessarily life threatening. However, adults who develop DM have an increased risk of developing cancer and should be screened for malignancies regularly...

Over time, the immune system cells attack healthy cells of small blood vessels in muscles and skin causing muscle fiber to shrink and sometimes cuts off blood supply to the muscle. DM tends to develop in muscles closest to the center of the body...

Often the first sign of DM is the development of a patchy, scaly, violet to dark red skin rash on the face, neck, shoulders, upper chest, knees, or back. Often the rash appears before any signs of illness or muscle weakness...

Muscle weakness, especially in the upper arms, hips, thighs, and neck, becomes apparent in activities such as climbing stairs or reaching up over the head. This weakness develops after the rash appears. Some people have difficulty swallowing and chewing when the muscles of the face and esophagus are affected. Individuals may also feel tried, weak, have a low-grade fever, weight loss, and joint stiffness...

Treatment
The goal of treatment is to improve muscle strength and allow the individual to participate in normal daily activities. Individuals are given steroid drugs (prednisone, corticosteroids) that suppress the immune system...

Over time, these drugs often produce undesirable side effects, so treatment is usually begun with a large dose, then tapered to the minimum dose needed for maintenance. People who do not respond well to steroid treatment may be treated with other immunosuppressive drugs or intravenous immunoglobulin...

Individuals with DM are advised to avoid exposure to the sun, as sunlight worsens the skin rash. Physical therapy is often helpful in keeping joints from stiffening and freezing. Moderate exercise is also recommended...

Alternative treatment
A healthy diet high is recommended for all individuals with supplemental protein for those with severe muscle damage...

Prognosis
The majority of people continue to have some symptoms and require long-term treatment, but their degree of daily activity varies greatly...

Serious complications from DM include involvement of the muscles of the heart and lungs, difficulty eating and swallowing, and a tendency to develop cancer...

Definition of DM in a variety of medical books...

dermatomyositis /der·ma·to·myo·si·tis/ (-mi″o-si´tis) a collagen disease marked by nonsuppurative inflammation of the skin, subcutaneous tissue, and muscles, with necrosis of muscle fibers.

der·ma·to·my·o·si·tis (dûrm-t-m-sts)
n.
A progressive inflammatory condition characterized by muscular weakness, a skin rash, and edema of the eyelids and periorbital tissue.

dermatomyositis
[dur′mətōmī′ōsī′tis]
Etymology: Gk, derma + mys, muscle, itis, inflammation
a disease of the connective tissues, characterized by pruritic or eczematous inflammation of the skin and tenderness and weakness of the muscles. Muscle tissue is destroyed, and loss is often so severe that the person may become unable to walk or to perform simple tasks. Swelling of the eyelids and face and loss of weight are common manifestations. The cause is unknown, but in 15% of cases the condition develops with an internal malignancy. Viral infection and antibacterial medication are also associated with an increased incidence of dermatomyositis. Treatment of this disease may include prescription of prednisone; immunosuppressants may be used in cases that are unresponsive to prednisone. In order to prevent muscle wasting and preserve muscle function, physical therapy is required. Most cases respond to therapy, although the disease is usually more severe and treatment resistant in patients with pulmonary or cardiac issues...

dermatomyositis [der″mah-to-mi″o-si´tis]
an acute, subacute, or chronic disease marked by nonsuppurative inflammation of the skin, subcutaneous tissue, and muscles, with necrosis of muscle fibers. It is in the group of illnesses known as collagen diseases. Among a variety of symptoms that point to the onset of the disease are fever, loss of weight, skin lesions, and aching muscles. As the disease progresses there may be loss of the use of the arms and legs. Complications such as hardening may occur, similar to the changes seen in scleroderma. Occasionally steroids prove helpful in relieving symptoms, but the most beneficial treatment is physical therapy to maintain maximal use of the muscles.

dermatomyositis (dur´mtōmī´-ōsī´tis),
n (polymyositis, dermatomucosomyositis) a form of collagen disease related to scleroderma and lupus erythematosus. The skin lesions are diffuse erythematous desquamations or rashlike lesions. The skin symptoms are related to a variety of patterns of myositis.

dermatomyositis
an acute, subacute or chronic disease of humans, marked by nonsuppurative inflammation of the skin, subcutaneous tissue and muscles, with necrosis of muscle fibers.
canine familial dermatomyositis
an inherited disease found mainly in Collies and Shetland sheepdogs. Starting at a young age, there is hair loss, alopecia, scaling, crusting and sometimes ulceration on the face, ear tips, pressure areas over the carpus and tarsus, and the tail. Myositis may be severe, causing a stiff gait, difficulty in chewing and atrophy, or be unrecognized except by biopsy.

dermatomyositis
A collagen vascular disease caused by complement-mediated microangiopathic muscle fiber destruction, leading to loss of capillaries, muscle ischemia and necrosis and perifascicular atrophy Clinical Patches of reddish or scaly rash on bridge of nose, sun-exposed areas of neck, chest, dorsal hands, periorbital edema Risk of cancer ↑ Management Azathioprine, cyclophosphamide, cyclosporine, MTX, and prednisone are generally unsuccessful; high-dose IV Ig may ↑ muscle strength and ↓ neuromuscular symptoms in refractory dermatomyositis. See Polymyositis, Scleroderma.

 Another great day!

Wednesday, February 27, 2013

Highs -n- Lows Living with the Disease

Wednesday, February 27th

I have been reading my check out papers from my last appointment...it says I have diabetes...hopefully my glucose levels will return to normal again once steroids are eliminated from my treatment regiment...

I have prednisone induced Diabetes...I started at 40mg and am at 17.5mg for 4 weeks...when I decrease to 15 for 4wks and so on. I see my rheumatologist on May 22nd to see how I am adjusting to the decreased dose of prednisone...I would like to get off the prednisone so I'm hoping the other medicine will do its job....

Another great day!

Tuesday, February 26, 2013

Highs -n- Lows Living with the Disease

Tuesday, February 26th

I continue to research DM and Myositis...

Exercise and Physical Therapy Guidelines for People with Myositis...

Note: Because exercise increases my levels of CPK (creatine phosphokinase), your doctor should be aware of any exercise program you are doing so that lab results are not confounded by your physical activity.

For the same reason, it may be wise to avoid exercise the day before blood tests are done.

Why exercise?

While exercise will not "cure" myositis, it may help mediate certain aspects of the disease...Exercise can increase muscle strength, flexibility, and cardiovascular status, as well as improve your psychological well being...While it is questionable whether muscle can actually regenerate after it has been damaged by myositis, you can maintain and strengthen the muscle you have...You also may be able to prevent further loss of muscle tissue. Exercise also may enable you to decrease your medication levels...

A recent article in the British journal Rheumatology reported that there were no detrimental effects for 10 people with myositis who participated in an exercise study...They were given a home program involving 15 minutes of exercise done five times a week...The program consisted of warm-up, stretching, and strengthening exercises...A 15-minute walk was also recommended for program participants...

The results of this study were very positive:
Disease activity did not get worse
Average CPK level was the same before and after completing the study...
No significant changes occurred in muscle biopsy or MRI results...
Two people decreased their prednisone levels...People felt better about the status of their health...The people who were weakest in the beginning made the greatest gains...

When should I exercise?

Exercise only after getting your physician's approval. Then find an exercise program that you like, are comfortable with, and know how to do properly...To avoid accidents, exercise when you are mentally alert..
Exercise when you are well hydrated (drink water beforehand), well rested, and warmed up...

Know what stage of disease you are in. If you are in a flare, your muscles may be compromised. Since exercise and muscle contractions always produce "micro-damage" in your muscles, your muscles may not be able to heal as well in the midst of a flare...
Because exercise increases your levels of CPK (creatine phosphokinase), it can confound lab results. It may be wise to avoid exercise the day before blood tests are done. Also make sure your doctor is aware of your exercise program...

Do I need to see a physical therapist?

Because what is best for someone else with myositis may be inappropriate for you, an individualized program is ideal. Consider asking your doctor for referral to a physical therapist who can design the best program for you...

Physical therapists bring extensive knowledge of the musculoskeletal system to an exercise plan...They can teach you how to do an exercise correctly to avoid harm and maximize benefits...Physical therapists can provide alternative exercises to people with compromised muscles. Trainers in a gym may or may not understand the special needs of people with myositis... However, in order to have a physical therapist design an exercise program for you, you need to get a prescription or referral from your doctor...

What if the physical therapist has never heard of myositis?

Due to the rarity of myositis, it is possible that a physical therapist may not have heard of your condition...That does not mean that the therapist cannot treat you...Physical therapists who have a good knowledge base and practical experience should know what kind of program would most benefit a person with muscle inflammation...

Ask if the therapist has ever treated someone with a similar condition and gauge the response...If someone pretends to know exactly what will "cure" you, be skeptical. But be just as wary of a person who doesn't take myositis seriously, is unwilling to research your illness, and/or will not contact your physician for further information or clarification...

What kind of exercises should I do?

First and foremost, do exercises that you enjoy...Any exercise is good exercise as long as you pay attention to good body mechanics...If you dread your exercise program, you will not follow through on it...If possible, find a friend who will exercise with you... Friends are a good motivational tool and can give you support...

Start gradually...Don't jump into a full-fledged program - this is something you will work up to. Ideally, you should eventually include aerobic activity three to four times per week for 20 to 30 minutes, plus strengthening exercises two to three times per week...

Work on movements that:
Increase flexibility (such as stretching)
develop strength (working against resistance, such as bands or light weights), and enhance endurance (such as walking or running, which boost cardiovascular status.)

Always begin your workout with stretching exercises. Do not bounce when you stretch. Rather, hold stretches for 20-30 seconds...

As much as possible, do "closed chain" exercises. Closed chain means that you have both feet on the ground, like a closed system between yourself and the ground. Open chain means that you are sitting on a chair or do not have your feet on the ground. Closed chain exercises are believed to be very functional...

Range of motion exercises can be a focus of an exercise routine...
The easiest level is passive range of motion. Someone else moves parts of your body for you. For example, someone may move your arm around for you; you don't work the muscles at all. Passive range of motion exercises keep motion around the joint when a person is not able to do such exercises for themselves...

The next level is active assistive range of motion]. In this case, you move your arm as much as you can, and someone finishes the movement for you...

The final level is active range of motion exercises. You move that part of your body by yourself...

In cardiovascular activity, your goal is to raise your heart rate above its "resting" or "baseline" level for 15 to 20 minutes at a time...

How can I modify an exercise program if I have difficulty?

There are many ways to modify your exercise program.

Change the length of time you exercise.
Change your posture. You can either use gravity and body weight as resistance by standing up or you can avoid gravity by sitting or lying down or exercising in a pool. For example, raising your arm to shoulder height is different while standing on the ground than while standing in a pool.
Increase or decrease the number of repetitions (the number of time you repeat an exercise) or the number of sets (a group of repetitions).

Use resistance, like elastic bands or weights, and change the amount of resistance.

Increase or decrease the amount of time you rest between sets or repetitions.

Increase or decrease the number of times per week that you exercise.
Add or delete exercises in your program

How do I know if I am doing these exercises correctly?

Listen to your body. It will probably tell you if you are doing too much or if you are doing an exercise incorrectly. Move at your own pace. If something hurts, stop. Use pain as a warning sign to make you reevaluate what movement it was that you were doing that caused pain, and why the pain happened. Too many repetitions? Too much weight?
Forget the old "No pain, no gain" motto of exercise. While muscle fatigue and soreness are expected in any exercise program, whether for healthy or inflamed muscles, something may be wrong if there is pain. Stop and think about it.

Why is there always so much emphasis on rest?

Rest is very important. It allows your muscles to recover. You are doing micro-damage to your muscles every time they contract, and you need to let this heal. You also need to vary the pace and the types of exercises you do.
Start exercising gradually and plan your week around your exercise. That way, your "bigger workouts" will be followed by well-deserved periods of rest.

Most important, be careful, be safe, have fun, and keep a positive attitude!
 
Another great day!

Monday, February 25, 2013

Highs -n- Lows Living with the Disease

Monday, February 25th

Today I overdid it....I needed to lay down and rest for awhile...need to remember to listen to my body...so many changes taking place...

---------------------------------------

When in AZ this year we stopped to get something to eat before going to the gem show...while there, a young homeless man walked up to us and asked us for a couple of dollars to get something to eat...so many times we automatically judge or make fun of people before getting to know them...we judge rashly, assuming the worst in people...

Judgment carries with it an attitude of condemnation...after all, no one knows what is in a heart, but Him. Let's pray for people rather than render judgments....

Another great day!

Sunday, February 24, 2013

Highs -n- Lows Living with the Disease

Sunday, February 24th

I was listening to a Christian CD today and It reminded me of a situation in my life around 29 years ago...I was a kindergarten teacher in AZ...at that time I was going through a difficult situation...

I was finishing up at work and went across the road to a small coffee shop to wait for my ride and out of nowhere came an older woman...she said to me..."Greater is He that is in me than he that is in the world"...after she told me it...she then disappeared...I wasn't sure where she went but from that time forward whenever I had trials or difficult situations in my life...I would say this to myself...reminding me of God's Spirit in me to help me through anything I may have to go through...

For those who take the time to call out to God...will discover a deeper beauty...in the midst of any situation...God is Greater than anything we are going through...

Father God, I confess a restless spirit...teach me to sit contentedly in the warm embrace of your grace...Amen!

I will not live in fear...I will step out and do what God is asking me to do...I may not know what my future holds but I trust God with it...

Another great day!

Saturday, February 23, 2013

Highs -n- Lows Living with the Disease

Saturday, February 23rd

I had this moment in time...when I didn't know who I was anymore...I was someone else...I could no longer do the things I use to...

I then began to realize I am who I'm supposed to be...I found again, who I was in Christ...God has a plan for me, He adopted me as His own and specificly picked me out...

I have a soul and live in this body...
my body is only temporary and my soul will live on...

I am learning to work with my situation and know it's part of a bigger plan...I will stop mourning what I can't do or don't have and be thankful for the many things I can...I'm pressing on...
I will love myself just the way I am, in a balanced way...

Another great day!

Friday, February 22, 2013

Highs -n- Lows Living with the Disease

Friday, February 22nd

What was I thinking???  Paul, Kris and I went to Rochester yesterday afternoon shopping and while we were there I decided I'd go to Cost Cutters and get my hair colored with a few foils and cut...it needed something...my scalp was already red, irritated and my scalp dry...it's worse...when will I learn...things are different now...

Another great day!

Thursday, February 21, 2013

Highs -n- Lows Living with the Disease

Thursday, February 21st

Well, I got to the point tears were streaming from my eyes...it was time to finally give it up...

I was listening to a christian speaker and he was telling the story about his son being very ill and he couldn't do anything about it...he said he would hand it over to God and then snatch it back...that continued for several months...well, that's where I've been...handing it over to God and snatching it back...I realize there is nothing I can do about my health situation...it's time to give it up...

I may never understand why life takes the crazy twists and turns it does...unexpected and unwanted twists and turns....but my experiences proves that God is in control... It may not seem like it when I'm in the midst of the 'fire' but when I look back...I can see His prints everywhere.....

God carries me during my times of weakness and sends me dear friends to remind me...I am not alone...Thank You Lord!

Another great day!

Wednesday, February 20, 2013

Highs -n- Lows Living with the Disease

Wednesday, February 20th

Woke up with a very bad headache...

This morning I talked with Gena, my Health Care Coordinator, at the MDA Office in Edina...After filling out forms as a new MDA patient...my first appointment will be with a Neurologist...
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But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
Isaiah 40:31
AMEN!

Tuesday, February 19, 2013

Highs -n- Lows Living with the Disease

Tuesday, February 19th

I went into town this morning to pick up Kaylee...the wind was blowing snow onto the roads to make them slippery...I met a string of trucks and cars going only 25 miles an hour...On my way back into our driveway...the snow had drifted onto the road leaving just a small area to drive through...it's going to make it tough for the bus to come up and turn around...

On the news this morning they mentioned that daylight savings time changes in two weeks...I'm looking forward to spring...not very fond of this colder weather...

While in visiting with the Dr. yesterday...she told me that Summer will bring with it a new set of problems...so we want to get the symptoms under control, if we can, before then...

Another great day!

Monday, February 18, 2013

Highs -n- Lows Living with the Disease

Monday, February 18th

I had my Dr appointment today...
My Dr is having me tapper the prednisone...hopefully the other medicine will be able to hold it's own so I don't need to rely on the prednisone at all...at least high doses anyway...she told me to expect to take three steps forward and two step back...that's just the way it works...so not to be discouraged...

As I pray for guidance and give myself freely, without holding back any areas of my life...my dreams, goals, family, friendships, extracurricular commitments, and finances...I realize that God doesn't see me simply in the here and now; He perceives the big picture all at once...where I've been, where I'm at right now and where I'm going...He knows exactly how every little decision, action, or blessings may impact my life...

Another great day!

Sunday, February 17, 2013

Highs -n- Lows Living with the Disease

Sunday, February 17th

I continue to have itching on my scalp, legs and hips...I have tingling in my legs, arms, hands & between my shoulder blades...my left hand locked up again & my joints crack when I move...I am looking forward to my Dr appointment tomorrow to see how things are going..

Living with a chronic autoimmune disease can make you wonder at times whether you're up to the challenge..I continue to read about my illness, DM and to learn ways to cope...

I rest when I'm tired...learning to pace myself helps me to maintain a consistent level of energy...I try to maintain a daily routine as best as I can and continue to do the things I enjoy.

I acknowledge my emotions...
denial, anger and frustration...at times things don't seem normal or fair...feelings of fear and isolation all are common feelings when dealing with an illness....                                                        ---------------------------------------
I vow to remember that today is a new day...full of new beginnings and fresh moments...

Another great day!

Highs -n- Lows Living with the Disease

Saturday, February 16th

I am learning to be challenged and to recognize the blessings no matter what form they come in...

Living with a chronic disease that leads to progressive loss of muscle strength necessitates an almost perpetual grieving process. The acknowledgement for yet another thing I can no longer do or be involved in. There is an ongoing need to re-invent myself because the old me is simply no longer there. Learning to let go,  move on and adjust to the new me....I do this being fully aware that this is just another fleeting moment and  appreciating it to the fullest...

Another great day!

Friday, February 15, 2013

Highs -n- Lows Living with the Disease

Friday, February 15th

Today Kaylee and I will be taking Grandma Faye back home and stopping to visit Grandma Gloria...

Grandma Gloria is finally moving back into her own room today...after the water main break...
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I found this written by Joni Eareckson Tada...beautiful way to look at life while going through difficult times and not knowing what the future may bring...

SHATTERED GLASS
My art studio is a mess of half-chewed pastel pencils, old tubes of paint and piles of illustrations overflowing my file drawers. Recently, while cleaning up, I discovered some broken glass on the counter by the window. I also discovered that when sunlight struck the shattered glass, brilliant, colorful rays scattered everywhere.

Shattered glass is full of a thousand different angles, each one picking up a ray of light and shooting it off in a thousand directions. That does not happen with plain glass, such as a jar. The glass must be broken into many pieces.

What's true of shattered glass is true of a broken life. Shattered dreams. A heart full of fissures. Hopes that are splintered. A life in pieces that appears to be ruined. But given time and prayer, such a person's life can shine more brightly than if the brokenness had never happened. When the light of the Lord Jesus falls upon a shattered life, that believer's hopes can be brightened.

Only our great God can reach down into what otherwise would be brokenness and produce something beautiful. With him, nothing is wasted. Every broken dream and heart that hurts can be redeemed by his loving, warm touch. Your life may be shattered by sorrow, pain or sin, but God has in mind a kaleidoscope through which his light can shine more brilliantly.
Joni Eareckson Tada

I am so thankful for my faith in God and knowing He is carrying us through these difficult times...Amen!

Another great day!

Thursday, February 14, 2013

Highs -n- Lows Living with the Disease

Thursday, February 14th

Happy Valentines Days!

I've been trying to get everything unpacked and put away since we returned from our trip, have been doing laundry and cleaning up around the house...

I continue to educate myself and found this article in the NY Times...

For tens of thousands of Americans afflicted with inflammatory muscle diseases, simple tasks may be overwhelmingly difficult or fatiguing. Even before they know what is wrong, they may have difficulty raising an arm, climbing stairs, getting up from a chair or even raising the head from a pillow. Prolonged standing or walking can exhaust them, and even swallowing and breathing may be impaired.

The main causes of these symptoms are two conditions, polymyositis and dermatomyositis. Although few have heard of these diseases, together they are at least as common as amyotrophic lateral sclerosis, which is more widely known as Lou Gehrig's disease, and just as mysterious.

What is more, unlike A.L.S., inflammatory muscle disease can afflict children. Dermatomyositis is the most common muscle disease in children under 15 years old. The good news is that while there is no known cure or preventive, the symptoms can be well controlled in many patients. And in some, including about one-third of childhood victims, the disease disappears as mysteriously as it developed.

For others, unfortunately, myositis (pronounced my-o-SITE-us) is slowly progressive and eventually severely disabling. In some cases, it is even fatal. Ricky Bell, a former running back for the Tampa Bay Buccanners, died in 1984 from the complications of inflammatory muscle disease.

The causes of polymyositis and dermatomyositis are unknown, but doctors do know they are autoimmune diseases, illnesses inflicted upon the body by the same immune defenses that are supposed to protect the body from unwanted visitors.

Other autoimmune diseases, in which the immune response runs amok, include lupus and rheumatoid arthritis. By studying myositis, researchers may gain new insights into the causes of these and other autoimmune conditions and eventually learn how to reprogram the immune response to make it work once more for, rather than against, the patient. Possible Triggers

Few experts believe there is one cause or even just a few causes of inflammatory muscle diseases. Rather, a number of factors seem to initiate these conditions.

Researchers are exploring two main possibilities. One is that organisms somehow change muscle cells to make them appear foreign to the patient's immune system. The second is that the infectious organisms share molecular structures with muscle tissue and prompt the immune system to misdirect its attack.

For example, cocksackievirus is composed of RNA, the genetic messenger chemicals needed for the manufacture of new proteins. Researchers at Cold Spring Harbor Laboratory, whose studies are supported in part by the Muscular Dystrophy Association, have found antibodies in the blood of myosites patients that attack enzymes involved in cellular RNA functions.

Certain drugs, too, have been linked to inflammatory muscle diseases. They include clofibrate (used to lower cholesterol), vincristine (an anticancer drug), alcohol and heroin and, ironically, corticosteroids, the very immune-suppressing drugs used to treat myositis.

People who are already afflicted with one autoimmune or connective tissue disorder may have an increased risk of developing one of the inflammatory muscle disorders as well. Adult patients may also be more likely than others to have cancer, further suggesting that myositis involves a breakdown in immune defenses. The Clinical Picture

Though in children, the most common form is dermatomyositis, which causes a characteristic rash that simplifies diagnosis. Most often, childhood dermatomyositis begins in January, February or March, suggesting that a viral infection is a common trigger.

Symptoms of muscle weakness, the hallmark of inflammatory muscle diseases, may come on suddenly, like the flu, or insidiously over weeks or months. Before noticing weakness, the patient may experience unexplained fatigue or modest weight loss. Only about half of patients suffer muscle pain.

As the disease progresses, patients typically have difficulty walking and may eventually need a wheelchair. Wasting of muscle tissue, however, is not usually noticeable until late in the disease. Other symptoms may include difficulty chewing or speaking, weakness of the muscles in the chest that could lead to respiratory failure, and abnormalities of the heart or gastrointestinal tract.

Another great day!

Wednesday, February 13, 2013

Highs -n- Lows Living with the Disease

Wednesday, February 13th

In March 2012...as I mentioned in another blog...I had a punch biopsy taken to determine what I have...the results came back as overlapping diseases...Dermamyositis & Lupus...

Once the initial shock wore off, I decided I needed to learn as much as I could and fight back...today I called our local MDA office in Edina, MN to get started....this is my very first step in fighting back...the Muscular Dystrophy Association, which offers me the best DM doctors and health care professionals in the country...It also provides me with up-to-date MDA information, support groups, help in finding special equipment and understanding my disease, Dermamyositis at every turn...

As I adjust to my new lifestyle and ponder what my future will bring, I know that I will be getting the best possible care...my journey starts tomorrow with the local MDA clinic...I will have a Health Care Coordinator named Jenna working for me...I am so thankful for everyone that has helped me throughout this journey...

Another great day!

Monday, February 11, 2013

Highs -n- Lows Living with the Disease

Tuesday, February 12th

Happy Tuesday everyone...we made it back from AZ today...pretty cold start this morning...it was 31 degrees when we left...brrr...not sure I'm ready for the colder weather everyday, all day long...
At least in AZ if it starts out cold, you know it will warm up during the day...
Our day started at 5:30 am, flew out at 10:00am and made it home to Kellogg at 5:00pm...it's been a long day...

I slept most the way home in the airplane(2 hrs 44 min)..still very sore on my right side...It's probably the neuropathy and bursitis...
I have a Dr appointment coming up on Monday... hopefully they will be able to help...

Another great day!

Highs -n- Lows Living with the Disease

Monday, February 11th

I continue my research and found additional information about DM...

In some cases, myositis is a short-term problem that goes away after a few days or weeks. In other cases, it is part of a chronic (long-term) condition. Chronic forms of myositis can lead to muscle atrophy (wasting and shrinking) and severe disability.

Dermatomyositis is most common in women.. symptoms can start at any age, but the average age of first symptoms is age 50...

In dermatomyositis, cancer is found in approximately 10% to 20% of cases. Sometimes, the muscle problem develops first. In other cases, the cancer is detected before the myositis...
Dermatomyositis may accompany other autoimmune disease such as systemic lupus erythematosus (SLE) or progressive systemic sclerosis (also called scleroderma ).

How long myositis lasts varies depending on the cause...Dermatomyositis is usually chronic (long-lasting) but typically improves after one to two months of treatment...if cancer is associated with the myositis, improvement may occur if the cancer is treated effectively...

Another great day!

Sunday, February 10, 2013

Highs -n- Lows Living with the Disease

Sunday, February 10th

This first year with DM has been full of ups and downs...this morning I have tingling in my hips and legs and extreme pain on my right side...the neuropathy and bursitis doesn't completely go away...

My head continues to itch...I have sores on my scalp...

On a lighter note...
I would like to share with you some things that I have learned:

- trust that God has everything in his hands...
- hope is everything...
- energy is a precious gift - spend it wisely...
- "disease" brings us to our knees to give us a different view on life and what is really important - understanding the psychospiritual aspects of your disease is very important in recovery...
- listen to your body it will lead you to a diagnosis and recovery...
- nurture your soul during your recovery be creative during your rest periods...
- read, write, doodle or meditate..
- love yourself like you were your own best friend...
- read about your illness and medications - knowledge is power...
- doctor shop - don't stop searching until you find the one that feels right...
- use your doctor as a resource/and not as a cure - challenge them and ask many questions..
- a person with a chronic illness needs support - seek counseling from a professional therapist and/or join a support group...

Another great day!

Saturday, February 9, 2013

Highs -n- Lows Living with the Disease

Saturday, February 9th

I am almost a 51 year old female(my birthdays in March)...who has a nasty, rare connective tissue disease named Dermatomyositis...

Dermatomyositis if left untreated could cause death within 3 - 5 years...

I started the traditional therapy of steroids....although the medication helps to reduce the inflammation and clear up the rash it has side effects...after several months of being on steroids I experienced..puffiness in my face & eyes, eye drainage, weight gain, inability to concentrate or think clearly, facial hair growth, abdomen distention, muscle weakness, tingling and numbness in arms, hands, legs and feet...

Also as a result of these drugs and the disease I felt overweight and disfigured - my self-esteem became low...I was desperate to find beauty somewhere within this foreign body...others would comment on these changes...I had difficulty getting up from a kneeling potion unless I held on to something...the cognitive problems such as poor concentration, brain fog and word mix up were getting worse...my eyelids turned purple and started to droop...the blood vessels popped out...the sun and light exposure worsened the rash...hair loss and thinning...my scalp is very itchy...I became nauseous and experienced ringing in my ears...I got shingles and the flu from the lower immune system...I've seen so many changes taking place this last year...

I started searching within myself and discovered something much more important than physically beauty - I no longer see the flaws only the inner beauty...I am now at peace with myself and have nurtured my soul back to health...

Another great day!

Friday, February 8, 2013

More changes

Changes...

Even with makeup on you are able to see the redness...

Highs -n- Lows Living with the Disease

Friday, February 8th

Waking up this morning with swelling in my hands...

Today I notice what is working, rather than focusing on what is going wrong ...there’s nothing better than realizing that my life is ok just the way it is...appreciating the small blessings and everyday miracles that exist around me...
  
Another great day!

Thursday, February 7, 2013

Highs -n- Lows Living with the Disease

Thursday, February 7th

The last couple of days I've had increased inflammation causing a lot of pain..especially on my right side...I've been researching diets that will hopfully help reduce the inflammation...
Nutrition and Health: Anti-Inflammatory Foods

Fats and Oils...Omega-3 fatty acids are found in cold-water oily fish, flax seeds, canola oil and pumpkin seeds. Consumption of monounsaturated fatty acids found in olive oil, avocados, and nuts has been linked to reduced risk of cardiovascular disease. Other healthful oils include rice bran oil, grape seed oil, and walnut oil.

Fruits and Vegetables...Whole fruits, berries and vegetables are all rich in vitamins, minerals, fiber, antioxidants and phytochemicals. Choose green and brightly colored vegetables and whole fruits such as broccoli, chard, strawberries, blueberries, spinach, carrots and squash. You should eat at least five (and preferably more) servings of fruits and vegetables each day...

Protein Sources...Possible anti-inflammatory protein sources include lean poultry, fish and seafood (fatty fish offer protein as well as omega-3 fatty acids). Soy and soy foods such as tofu and tempeh, along with other legumes and nuts and seeds, can be used as plant-based protein sources. The best nuts are walnuts, almonds, pecans and Brazil nuts...

Beverages...our body needs water.... Drink tap, sparkling or bottled water, 100-percent fruit juices, herbal tea, low-sodium vegetable juice, and low- or non-fat milk are all healthful sources of water.

Foods To Avoid...Loading up on junk foods, high-fat meats, sugar, and highly processed foods may increase the potential for inflammation in your body...Reduce your consumption of trans-fats and saturated fats by cutting back on highly processed foods, red meats, and high-fat processed meats such as bacon and sausage. Cut back on refined white flours in bread and pasta (look for 100-percent whole grains instead). A small amount of sugar is okay, but cut down on most added sugars by decreasing your consumption of sugary sodas, pastries, candy, rich desserts, and pre-sweetened cereals.

Another possible source of irritation comes from the nightshade family of plants, which includes potatoes, tomatoes, and eggplant. These vegetables contain a chemical alkaloid called solanine, which can trigger pain in some people. While there aren't any formal research findings that back the claim about nightshade plants, some people do believe they get relief from the symptoms of pain and inflammation when they eliminate them.

Anti-inflammatory Diet Tips

Choose fresh foods more often and choose fewer heavily processed foods. Here are some tips:

For breakfast, try oatmeal served with fresh berries and walnuts.
Snack on whole fruits, nuts, seeds, and fresh vegetables instead of cookies and candy.

Eat more fish and less fatty red meat.
Cook with olive oil and canola oil.
Try a tofu stir-fry or scramble.
Have a salad with lots of fresh vegetables as your meal.
Stay away from deep-fried foods; bake, broil, poach or stir-fry instead.
Choose dark green or brightly colored vegetables as side dishes -- they should fill half your dinner plate.
Maintaining a healthy weight also appears to be helpful for reducing pain and inflammation.

Another great day!

Wednesday, February 6, 2013

Highs -n- Lows Living with the Disease

Wednesday, February 6th

I continue to learn about DM...

What does autoimmune mean?
Literally it means immune activity directed against the self. The Immune system fights the body itself (Auto==self). In autoimmune diseases, the immune system makes a mistake and reacts to the body’s own tissues.

What is inflammation?
Literally it means setting on fire. It is a protective process our body uses when tissues are injured. Inflammation helps to eliminate a foreign body or organism (virus, bacteria) and prevent further injury. Signs of inflammation include; swelling, redness, pain and warmth. If the signs of inflammation are long lasting, as they can be in lupus, then damage to the tissues can occur and normal function is impaired. This is why the treatment of most autoimmune diseases are aimed at reducing the inflammation.

What happens with Dermatomyositis?
This is a class of autoimmune diseases called myopathies. With this one in particular, there is such an immune system response, that the skin develops redish purple rashes and patches. They particularly are abundant in the eyelids, armpits, elbows, wrists, fingers, knees, ankles and toes. They are found mostly where major joints are located and where muscles work to extend or flex a joint.There is not much research to show why this happens...

Autoimmune diseases are so chronic, that it is the accumulation of many stressors that are creating disease. The goal is to pull things away from the body to so call “put out the fire."

Another great day!

Tuesday, February 5, 2013

Changes to my Feet


DM causes marks on feet and blood vessels to pop out...

Highs -n- Lows Living with the Disease

Tuesday, February 5th

Today I began my day as any other...I got up, took my medicine, took off my pain patches and went in to Tim and Connies for several cups of coffee and breakfast...another beautiful morning...low temps were in the 40's...highs are in the 70's...:-)

This morning I went to the Muscular Dystrophy Headquarters to obtain as much information as I could...the power of knowledge...I met with one of their representatives...she provided me with printed materials and explained how the MDA works...it was very insightful...to get help I only need to contact our local MD clinic and they will care for me with Drs already trained in treating all of the MD diseases...wow, so glad I found out they're there for me...

After our meeting this morning it started me thinking about how I need to listen to my body and act accordingly...regardless of how well I may look, or how healthy others think I may be, if I'm tired, swollen, or achy...I take care of myself...

I'm setting goals...goals to keep me on the straight and narrow- so that I didn't fall into the trap of just being...I will come up with benchmarks that would motivate me, but didn't interfere with my myopathies...its almost like a reverse "to-do" list, in fact. Instead of listing tasks to be done, you list things that ease your life with DM, anything to make it easier to cope with the symptoms I'm experiencing...because DM has a mind of its own...

My current doctors have played a HUGE role in helping me determine what drugs will help, which will hurt, and when and how best to administer the medication of choice...as my doctor put it, I would eventually be the expert in this disease...it's in my best interest to be informed, educated, and up-to-date on the treatment and research offerings for DM...I am so thankful for my Drs...

Today is another great day!

Monday, February 4, 2013

Highs -n- Lows Living with the Disease

Monday, February 4th

We've had absolutely gorgeous weather the entire time we've been in AZ...I have been enjoying the time relaxing and refocusing...

As I go through this journey, I am trying to stay positive and healthy...I do not want pity...I want understanding and to be able to share my experience with others...

In the end, the peace I have gained is wonderful...I use yoga to maintain my strength and to help me relax...

Everyday is what I make it...the choice to serve God and others...

Another great day!

Sunday, February 3, 2013

Highs -n- Lows Living with the Disease

Sunday, February 3rd

I found out itching was a common symptom of DM...when visiting several web sites and health forums to see if I am in the minority or majority....after reading others experiences, it seems that itching either precedes a flare or appears during a flare. The concensus seems to be that it appears when the disease is active...

When I was first diagnosed with DM back in March/April 2012 I would scratch all over my body until it would bleed...I got in the shower for relief but that was only temporary...the greatest relief came when the Dr gave me steroid cream and put me on Prednisone. I don’t know how it is for Lupus but for DM, when the disease is controlled so is the rash/itching...

Prednisone is great for a short term use but the long term is definitely hard on you...I am told. I'm on 20 mg right now and I have the continued itching off and on, mostly on...when I was on a higher dose I didn't have the continued itching...

I go back to my Dr when I get back from AZ to see if the combination of medicine is working...

Another great day!

Saturday, February 2, 2013

Highs -n- Lows Living with the Disease

Saturday, February 2nd

We found out why my eyes are so puffy and having discharge...it's the steroids causing it...the last few days I've been waking up with puffiness under my eyes...somedays the puffiness sticks around all day...tonight I still have it...

I've also been gaining weight because of my mediation.  I found out a lot of others using the same medications were also struggling with weight gain.. it's so frustrating.

I'm hoping my swelling today isn't because we are running more while in AZ...we went to the gem show for a few hours and ran to a second hand store to find decorations to make the travel trailer fell more like home...enjoying the beautiful weather...

Another great day!

Friday, February 1, 2013

Highs -n- Lows Living with the Disease

Friday, February 1st

Stepped down this morning and again it felt like stepping on pins and needles...at home I have my feet and legs elevated more...not sure if its happening because there are changes taking place with the DM...

I love being in AZ..beautiful weather...I really miss doing things outside like I use to...I feel limited in what I can wear...I see women with shorts or kapri pants, short sleves shirts, sandals and no hats or gloves in the 70 degree weather...I guess I'm feeling sorry for myself or at least venting...

Another great day!