Dealing with the everyday "abnormality" under the skin and the plans of medication or being non-medicated has allowed me to have a better understanding of those who have and deal with a disease. Wow, and this is just all the surface stuff I think about all the time. There's the burden of doctor appointments, medical bills, time consuming tests and research. Then there's research of a healthy diet that prevents certain "flare up" symptoms. The thing I find more of an annoyance is that unknowingly you may find yourself not being able to do anything one day. You feel like a cloud is covering you and you're overwhelmed with fatigue and weakness. Your immunity feels low and you're just feeling nauseated and lose an appetite to eat.
If you've known me before my symptoms became more prominent you'll know that I'm not no ordinary woman. I actually like moving furniture and lifting heavy things. I like sports and playing them. I always felt physically able to do everything and anything! I'm also a multi tasked person (which is probably not the wisest thing to do). If there was one to be on the phone, carry all the grocery bags up a flight of stairs and cook on the stove at the same time...that would be me.
So when my doctor told me to "take it easy" it was sad news for me. Slowing down was just never on my agenda. And to know that I may experience immobility with this disease in a few years or more struck me!
God surely has his plan for me. That brings to mind my favorite verse when I first had doubts about this diagnosis from my family practitioner. And wanted to be normal again.
2 Corinthians 4:16-18, " So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."
Saturday, June 1, 2013
Thursday, May 30, 2013
The diagnosis
So there I was sitting waiting for my Rheumatologist to view my x-rays...I was 29 and turning 30 the next day. My doc confirmed that I have Ankylosing Spondylitis. She's been taking note of my symptoms and also witnessed inflammation in the joints of my fingers. Then there was a distinct corrosion of my sacroiliac joint (which explained my lower back pain).
Instantly, I had a sigh of RELIEF because I've been waiting over a year to find out what was wrong with me. But at the same time I had a huge FEAR that my symptoms would get worse and I wouldn't be able to give myself to my kids and husband physically. Thoughts of depression overwhelmed me as I cried in my car before I left the doctor's. I prayed and asked God to help me accept this affliction. But it was hard.
This is a overview of what my auto-immune disease is:
Ankylosing spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort. In the most advanced cases (but not in all cases), this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes creating a forward-stooped posture. This forward curvature of the spine is called kyphosis.
AS can also cause inflammation, pain and stiffness in other areas of the body such as the shoulders, hips, ribs, heels and small joints of the hands and feet. Sometimes the eyes can become involved (known as Iritis or Uveitis), and rarely, the lungs and heart can be affected. The hallmark feature of ankylosing spondylitis is the involvement of the sacroiliac (SI) joints during the progression of the disease, which are the joints at the base of the spine, where the spine joins the pelvis.
SYMPTOMS:
It is important to note that the course of ankylosing spondylitis varies greatly from person to person. So too can the onset of symptoms. Although symptoms usually start to appear in late adolescence or early adulthood (ages 17-35), the symptoms can occur in children or much later.
Typically, the first symptoms of AS are frequent pain and stiffness in the lower back and buttocks, which comes on gradually over the course of a few weeks or months. At first, discomfort may only be felt on one side, or alternate sides. The pain is usually dull and diffuse, rather than localized. This pain and stiffness is usually worse in the mornings and during the night, but may be improved by a warm shower or light exercise. Also, in the early stages of AS, there may be mild fever, loss of appetite and general discomfort. It is important to note that back pain from ankylosing spondylitis is inflammatory in nature and not mechanical. The pain normally becomes persistent (chronic) and is felt on both sides, usually persisting for at least three months. Over the course of months or years, the stiffness and pain can spread up the spine and into the neck. Pain and tenderness spreading to the ribs, shoulder blades, hips, thighs and heels is possible as well. Note that AS can present differently at onset in women than in men. Quoting Dr. Elaine Adams, "Women often present in a little more atypical fashion so it's even harder to make the diagnoses in women." For example, anecdotally we have heard from women with AS who have stated that their symptoms started in the neck rather than in the lower back. Varying levels of fatigue may also result from the inflammation caused by AS. The body must expend energy to deal with the inflammation, thus causing fatigue. Also, mild to moderate anemia, which may also result from the inflammation, can contribute to an overall feeling of tiredness.
Other Symptoms
In a minority of individuals, the pain does not start in the lower back, but in a peripheral joint such as the hip, ankle, elbow, knee, heel or shoulder. This pain is commonly caused by enthesitis, which is the inflammation of the site where a ligament or tendon attaches to bone. Inflammation and pain in peripheral joints is more common in juveniles with AS. This can be confusing since, without the immediate presence of back pain, AS may look like some other form of arthritis. Many people with AS also experience bowel inflammation, which may be associated with Crohn's Disease or ulcerative colitis. AS is often accompanied by iritis or uveitis (inflammation of the eyes). About one third of people with AS will experience inflammation of the eye at least once. Signs of iritis or uevitis are: Eye(s) becoming painful, watery, red and individuals may experience blurred vision and sensitivity to bright light.
...so this is my chronic incurable disease.
*I've highlighted what I have so far.
Instantly, I had a sigh of RELIEF because I've been waiting over a year to find out what was wrong with me. But at the same time I had a huge FEAR that my symptoms would get worse and I wouldn't be able to give myself to my kids and husband physically. Thoughts of depression overwhelmed me as I cried in my car before I left the doctor's. I prayed and asked God to help me accept this affliction. But it was hard.
This is a overview of what my auto-immune disease is:
Ankylosing spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort. In the most advanced cases (but not in all cases), this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes creating a forward-stooped posture. This forward curvature of the spine is called kyphosis.
AS can also cause inflammation, pain and stiffness in other areas of the body such as the shoulders, hips, ribs, heels and small joints of the hands and feet. Sometimes the eyes can become involved (known as Iritis or Uveitis), and rarely, the lungs and heart can be affected. The hallmark feature of ankylosing spondylitis is the involvement of the sacroiliac (SI) joints during the progression of the disease, which are the joints at the base of the spine, where the spine joins the pelvis.
SYMPTOMS:
It is important to note that the course of ankylosing spondylitis varies greatly from person to person. So too can the onset of symptoms. Although symptoms usually start to appear in late adolescence or early adulthood (ages 17-35), the symptoms can occur in children or much later.
Typically, the first symptoms of AS are frequent pain and stiffness in the lower back and buttocks, which comes on gradually over the course of a few weeks or months. At first, discomfort may only be felt on one side, or alternate sides. The pain is usually dull and diffuse, rather than localized. This pain and stiffness is usually worse in the mornings and during the night, but may be improved by a warm shower or light exercise. Also, in the early stages of AS, there may be mild fever, loss of appetite and general discomfort. It is important to note that back pain from ankylosing spondylitis is inflammatory in nature and not mechanical. The pain normally becomes persistent (chronic) and is felt on both sides, usually persisting for at least three months. Over the course of months or years, the stiffness and pain can spread up the spine and into the neck. Pain and tenderness spreading to the ribs, shoulder blades, hips, thighs and heels is possible as well. Note that AS can present differently at onset in women than in men. Quoting Dr. Elaine Adams, "Women often present in a little more atypical fashion so it's even harder to make the diagnoses in women." For example, anecdotally we have heard from women with AS who have stated that their symptoms started in the neck rather than in the lower back. Varying levels of fatigue may also result from the inflammation caused by AS. The body must expend energy to deal with the inflammation, thus causing fatigue. Also, mild to moderate anemia, which may also result from the inflammation, can contribute to an overall feeling of tiredness.
In a minority of individuals, the pain does not start in the lower back, but in a peripheral joint such as the hip, ankle, elbow, knee, heel or shoulder. This pain is commonly caused by enthesitis, which is the inflammation of the site where a ligament or tendon attaches to bone. Inflammation and pain in peripheral joints is more common in juveniles with AS. This can be confusing since, without the immediate presence of back pain, AS may look like some other form of arthritis. Many people with AS also experience bowel inflammation, which may be associated with Crohn's Disease or ulcerative colitis. AS is often accompanied by iritis or uveitis (inflammation of the eyes). About one third of people with AS will experience inflammation of the eye at least once. Signs of iritis or uevitis are: Eye(s) becoming painful, watery, red and individuals may experience blurred vision and sensitivity to bright light.
...so this is my chronic incurable disease.
*I've highlighted what I have so far.
Subscribe to:
Posts (Atom)