How am I doing since my diagnosis?
It's been a few days since my diagnosis. The feelings I have endured have been up and down. I keep going through my mind and wondering how after more than 40 years of being almost completely healthy that I can get sick like this. Each day, I have to ask myself if I am up to the challenge of tackling the diseases I have been diagnosed with. My first thought is NO! I am very scared for many reasons. First off, I cannot fathom not being "normal" and getting up every day and facing the day like any other normal healthy person. The frustration of not being able to do simple tasks on my own is discouraging, even with my husband quick to help with ANYTHING I need. I have cried often, especially as I stood in line buying long-sleeved anti-UV shirts and oversized hats to protect me from my biggest enemy...The sun! Just the adjustments I have made in the last couple weeks kills me and I have been on an emotional roller coaster. I think my biggest fear might be that those who are unaware of what this disease is all about will not see the extent of my pain and suffering because they do not see it. I have already heard some people close to me mention that "You don't look sick" and "How could you have that disease when nobody else in our family has had anything like it?" When I hear those things, I instantly closed myself up and have a silent tearless cry. It's painful in many ways because I am still asking myself "Why me?" There are so many people out there who want to have something wrong with them so they can gain sympathy, but I am not one of them. I want my normal life back and I know life will never be the same. I know that once I learn more about my diagnosis and begin treatment, I will feel better and able to adjust to my new life.
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| One of my first new wardrobes (hat and long sleeved shirts) Don't I look thrilled? |
Last Monday, when I was with the doctor, she told me that the best way to cope is to do all the research I could to learn about the diseases I have, how they will be treated, my prognosis, and support groups. I told her I was going to blog about my new life and journey and she thought it was a wonderful idea.
One thing I did learn from my Doctor...I am the first and only case the Detroit VA Medical Center has ever encountered. I knew Dermatomyositis was rare, but I never realized it was so rare that I would be the first case. Dr. Mosley did mention that when the results were coming in that there was a patient who would be seeing her with the possible diagnosis of Dermatomyositis and other autoimmune disorders, she consulted other Rheumatologists, Dermatologists, Neurologists, and Oncologists, as well as studied up on the disease before she even met her new patient. She was ready for me and I feel honored that she dedicated the time just for me. I am positive that anyone who would be in my situation would feel the same way. I do honestly feel just as compelled to study up myself, since new norm will be spending time downtown for regular IV treatments and other appointments.
This is what I found:
What is an autoimmune disease?
Autoimmune means that your immune system cannot tell the difference between the proteins (antibodies) that are produced to fend off invaders, such as illness. Autoimmune diseases (Yes, there are many) occurs when the body attacks its own cells and tissue. This happens when the immune system begins to produce its own antibodies to attack good tissue instead of fighting infections.
Who gets them?
The cause of these diseases are unknown. Depending on the doctor, website, or other literature on autoimmune diseases, many have speculated that they stem from illness, injury, or heritage. There is no clear reason.
How are they treated?
Depending on the disease the patient has, autoimmune diseases are typically treated with immune suppressant drugs, which focus on reducing, or suppressing, the immune system. Some autoimmune diseases actually do have periods of remission with treatment, and at times, on its own.
What is Lupus?
Lupus is the shortened name for Systemic Lupus Erythematosus (SLE). Those with Lupus experience their body attacking its own healthy tissue. It is a disease that causes flares where symptoms occur and or more prominent than when a flare is absent. Flares consist of joint pain and swelling, skin rash over the face and chest, headache, fever, malaise (felling ill), sensitivity to ultraviolet light, mouth sores, and extreme fatigue. An autoimmune disease, lupus is chronic and can cause damage to any part of the body, including skin, joints, and internal organs. Organs affected in more serious cases of Lupus include the kidneys, heart, lungs, and skin. It is known that Lupus is more common in women, as with most autoimmune diseases.
Who gets it?
Lupus is not contagious and cannot be caught or transferred from human to human. Although it is unsure whether Lupus is genetic, it is more common with those who have relatives with other autoimmune diseases. Roughly 1.5 Million Americans are affected by Lupus.
How is it Treated?
There is no cure for lupus, but symptoms can be treated and periods of remission are possible. Treatment varies from patient to patient. For mild cases, treatment with anti-inflammatory and Non-steroid Anti-inflammatory drugs, corticosteroids, and other medicines to relieve symptoms of Lupus. In cases where Lupus has progressed, patients are treated with antimalarial and immunosuppressive drugs. In extreme cases where the disease has progressed, cancer-fighting drugs and anti-rejection medications are prescribed, such as Cytoxan, Rheumatrex, and Imuran.
Prognosis for Lupus Patients:
For patients who have followed the medical instructions of their Rheumatologist and whose internal organs have not been affected will rarely need to be hospitalized for the disease and may live a full and normal life. Progression of the disease is obviously not good news, but knowing your body, the symptoms of the disease, and being a responsible patient can help extend the patient's life.
What is Dermatomyositis?
Dermatomyositis (DM) is a
rare connective tissue disease and an
acute, subacute, or
chronic disease marked by
nonsuppurative inflammation of
the skin, subcutaneous tissue, and muscles, with necrosis of
muscle fibers. It is considered one of three inflammatory myopathies and
leads to
destruction of
muscle tissue usually accompanied by pain
and weakness. Specific rashes on certain body parts, such as face, chest, upper back, and knuckles, are indicative of the disease.
It is not known what causes Dermatomyositis. However, it is thought that this autoimmune disease may be associated with illness or injury. It is hard to diagnosis, or shall I say it can be tricky. Diagnosis takes patience as there are blood test, X-Rays, MRI's, and muscle biopsies. Treatment cannot successfully begin until a full diagnosis is achieved. Treating the symptoms prior to full diagnosis can only thwart proper treatment and specific medicines are prescribed based on the progression of the disease.
What are the symptoms?
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, hands, or back. Often the rash appears before any signs of illness or muscle weakness. As with my doctor, many treat the rash and send the patient on their way without further treatment...until we come back.
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, & joint stiffness. Some individuals have the rash for years before they progress to these symptoms, such as myself, while in others the onset of symptoms is rapid.
Who gets the disease?
Dermatomyositis is very rare. In fact, there are only about 20,000 known cases in the US today. That is roughly 5 individuals per every million. Although men can get the disease, it is more prominent in women.
How is it treated?
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 (IVIG). 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.
What is the Prognosis?
DM, is chronic. There is no cure, but it can be treated. I will have this disease the rest of my life. The course of DM is highly variable. In about 20% of people, the disease spontaneously goes into remission and individuals are able to lead symptom-free lives for long periods. On the other hand, in about 5% of individuals the disease progresses to death because of heart and lung involvement. 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. This association is
seen only in
adults and not in
children.
There is a cancer risk with DM. The two main concerns are with Lung and Skin cancers. My lungs currently seem to be ok. I do have tightness on occasion, but I also have mild asthma and those symptoms may be associated with that. I will find out the results of my chest Xray next week, but I am not anticipating anything to be of concern. As far as my skin,
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| Spots on my upper right chest |
I do, however, have a couple suspicious spots of concern on my chest and have an appointment set for August 6th with the Dermatologist. Fingers crossed.
What is next for me???
Since the simple thought of having this disease, my doctor had suggested to learn of the disease and what all this means. She suggested finding out more information from the Mayo Clinic website. I have found it to be very informational. it suggests the following for coping with this diagnosis:
- Know your illness. Read all you can about dermatomyositis and other muscle and autoimmune disorders. Talk to other people who have a similar condition. Don't be afraid to ask your doctor any questions that you may have concerning your illness, diagnosis or treatment plan.
- Be a part of your medical team. Consider yourself, your doctor and any other medical experts involved as a united front in the fight against your disease. Following the treatment plan you agreed to is vital. Keep your doctor updated on any new signs or symptoms you may experience.
- Get active. Maintaining an exercise routine can help you maintain and build your muscle strength. Just be sure that you get a detailed plan and recommendations from your doctor or physical therapist before starting an exercise program.
- Rest when you're tired. Don't wait until you're exhausted. This will only set you back further as your body tries to recuperate. Learning to pace yourself can help you maintain a consistent level of energy, accomplish just as much and feel better emotionally.
- Acknowledge your emotions. Denial, anger and frustration are normal feelings when you must deal with an illness. Things don't seem normal or fair and likely seem out of your control. Feelings of fear and isolation are common, so stay close to your family and friends. Try to maintain your daily routine as best you can and don't neglect doing those things you enjoy. Many people find support groups to be a helpful resource.
How I need to feel:
I want to get to the point where I can say...I got this! It won't be so bad!!! I am not there yet.
References
American Autoimmune Related Disease Association. 22100 Gratiot Avenue, Eastpointe, East Detroit, MI 48201-2227. 800-598-4668. http://www.aarda.org.
Bertsias G, Sidiropoulos P, Boumpas DT. Systemic lupus erythematosus: Treatment - renal involvement. In Hochberg MC, Silman AJ, Smolen JS et al, eds.Rheumatology.
Callen, Jeffrey P. Dermatomyositis, 5 December 2002 [cited 16 February 2005]. http://www.emedicine.com/derm/topic98.htm.
Crow MK. Etiology and pathogenesis of systemic lupus erythematosus. In: Firestein GS, Budd RC, Gabriel SE, et al, eds.Kelley's Textbook of Rheumatology
Crow MK. Systemic lupus erythematosus. In: Goldman L, Schafer AI, eds.Goldman's Cecil Medicine
Hashmat, Aamir and Zaineb Daud. Dermatomyositis/Polymyositis, 16 January 2004 [cited 16 February 2005]. http://www.emedicine.com/neuro/topic85.htm.
Koler, Ric A. and Andrew Montemarano. "Dermatomyositis." American Family Physician, 24, no. 9 (1 November 2001) 1565–1574 [cited 16 February 2005]. 〈http://www.aafp.org/afp/2001101/1565.html〉.
Muscular Dystrophy Association. 3300 East Sunrise Drive, Tucson, AZ 85718-3208. 800-572-1717. http://www.mdausa.org
First off, I want to start off with a positive note: Today, I feel pretty good. Days like this seem to be few and far between, so I thought it was be great to finally be able to say that I am feeling pretty good...and still without treatment. I actually went to a pool gathering today at my niece and Brother-in-Law's house...but not before stopping at Dick's Sporting Goods to get some Solar/Anti-UV sleeves. There was only one brand and style and they were very expensive, but I was in great need of them. I am sick of using the so-called anti-UV shirts that claimed to keep me cool, but only made me sweat more like a pig. I was quite amazed.
The results of this biopsy will allow the doctor (my Rheumatologist) to know for sure the diseases which they suspect are plaguing me, and the amount of degenerated caused from them. By knowing this, she (Dr. Mosley) will know the course of action and drugs to treat me with. Fron what the surgeon said, the results will take roughly 2 weeks. Dr. Mosley still wants me back in her office on the 27th. She thinks the results will be back by then. If not, she is not available again until the 12th of August...which would mean a longer delay in treatment :(
