Archive for the The Blogs By Dana Category

In The Mirror…About to Break…Worthy…Not This Disease…I Am Dance! By Dana

Posted in The Blogs By Dana, Week 12: Self Esteem on January 23, 2012 by Cookie Has A.S.
This satisfies the MOWer’s blog topic: self-esteem!
When I first began belly dance class, it was at night in the neighboring apartment complex. I had never attempted it before. I had my shoulder replaced in March 2010 and began belly dancing in August of that year. It was difficult for me at the time. I can’t lie. I had already finished my physical therapy but still did not have full range of motion in my right shoulder. I didn’t have a lot of flexibility everywhere else~back, neck, hips, and legs. I also didn’t have a lot of self-esteem. If I was going to go back to dancing, I was going to have to be that same person that held nothing back and just let loose. If I couldn’t be that person, then I was going to have a hard time dancing. I also knew if I couldn’t allow myself to dance again, that would be like a death sentence.
I only went to the apartment complex belly dance class 4 times. Then I thought it just wasn’t for me. I felt self-conscious and as if I just couldn’t keep up. I thought for sure everyone was watching me and wondering what was wrong with me. I just knew that I stuck out as someone that couldn’t dance because there was “something wrong” with me. I felt every one’s eyes looking me over, up and down, and through me. I couldn’t go back…I failed!
A couple months later, a bunch of people went out for my birthday. One person that works with my hubby, who happens to be a long-time belly dancer, gave me a gift certificate for class with the same dance instructor that was at the apartment complex but at a dance studio. I thought I should give it another try…
Meanwhile, we adopted our son Michael. We brought him home, and we got settled. Then I returned to belly dancing once more to give it another try. I felt better about it this time for some reason. I was stronger. My right shoulder’s range of motion was back to normal, and I was feeling pretty good physically. I began in February of 2011 when Mick was only 2 months old. I started in the Saturday Beginner Class. At first, it was a little hard, but not as hard as it once was when I was going at night to the apartment complex classes. I felt like maybe I could catch on faster now that I was physically feeling better. By the end of that first class, I had a confidence that I had not had in soooooooo long! I really needed that class! I had my friend Ang come visit from out of town, and she joined us for one class to learn the very end to our dance. She caught on extremely quickly, and she did an awesome job especially considering that she had never taken a belly dance class ever. At the end of that class, I took one more Saturday Beginner Class, and then was moved up to the Intermediate-Advanced Class!
I couldn’t believe it! By the time I left for my brother’s wedding in April, 2011, I had already completed my first Intermediate-Advanced Class! I had no problems keeping up either, which made it so much more enjoyable and worthwhile. I began taking both the Beginner and Intermediate-Advanced Classes together so that I could take more than one class at the same time. I fell in love with belly dance!!!!
Just last weekend (January 15th), our belly dance studio had a performance. We were asked to get together with other people in our class in November to perform a dance or by our self to perform a solo dance in the show. I was asked by 5 different people to do a dance with them. Talk about a boost in your self-esteem! You know that when others ask you to dance with them, they appreciate your talent or else they would not ask you to dance with them. I was honored and excited to begin practicing. Of course, I was going to be out of town for a lot of the holiday season which meant that I would miss a lot of practice time, so I opted out of the January performance. I told everyone that I would love to dance with them in the spring performance in March or May.
The holiday season has come and gone so quickly. We returned from visiting family in St. Louis, and were ready to get back into our normal routine again. I had made an appointment with my hip orthopaedic surgeon way back in November to see him on January 4th. I had been having some problems with the right hip~clicking, sticking, popping, pain, grinding, and I feared that it was near total collapse.  My fears were actually made true when I was told that the right hip could collapse totally any moment now. I am continuing to belly dance though until I can no longer do it physically. I went to the performance eleven days after my news from my orthopaedic surgeon. I cheered on my fellow classmates.
Two days later, I went to my belly cardio class, which is fast paced and super-charged fun! I danced my body and my heart out as if nothing was wrong with me physically. I told no one in my class about my hip. I just wanted to be “normal,” to feel “normal,” and to only have people look at me for how I danced because they liked my dancing! OH, I danced as though my life depended on it! I held my head up high and my shoulders back! I was so proud of myself! No one can make you have self-esteem, it is

The music began…I watched myself dancing in the mirror next to all the other women and young ladies in my class…I couldn’t even tell…I don’t think anyone could tell…I truly couldn’t tell…I moved my hips, then my shoulders, and I could keep up with everyone in the class~old and young alike…No one even knew I was about to break…No one knew I was less than perfect…it looked as if I was afraid of no one or nothing…I gave the impression that I had so much spirit, brevity, courage, spunk…I obviously feel comfortable in my own skin…I know what I’m doing…This is so right!…I am worthy!…I am a dancer!…I am dance!…I am not this disease…it doesn’t define me!…I am worth so much more!…

You don’t wake up one morning and say, ‘I will become a dancer.’

You wake up one morning and realize you’ve been a dancer all your life,

And you say to yourself, ‘I am a dancer.’

‘I am dance.’

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I Have The Best Friends Anyone Could Ask For…I Don’t NEED Anything More! By Dana

Posted in The Blogs By Dana, Week 11: Need on January 20, 2012 by Cookie Has A.S.

This blog post will fulfill the the MOWer’s blog carnival topic “NEED.”  When I think about the word “need”, I automatically think about the word “want” as well. Many people tend to interchange these two words as if they have the same meaning, and in fact, these two words are very different in meaning. The word “want” is defined as:

1. desire something: to feel a need or desire for something

“We want a new car.”
2. wish something done: to desire to do something or that something be done

“He wants his steak well done.”
3. miss something: to feel the lack of something

“After a week on the road, I want my own bed.”
4. wish somebody to be present: to wish to see or speak to somebody

“Someone wants you at the door.”
5. seek somebody as crime suspect: to seek somebody in connection with a crime ( usually passive )

“wanted for two felonies”
6. desire somebody sexually: to feel sexual desire for somebody ( informal )

So when you “want” something, you could replace the word “want” with any number of these words/phrases: desire, wish for, would like, feel like, crave, covet, yearn for, hanker after, be after, be looking for, hope for, aspire or fancy.

When you “need” someone or something, the definition changes:

1. transitive and intransitive verb require something: require something in order to have success or achieve a goal

“Do you need any money?”
2. be necessary: used to indicate that a course of action is desirable or necessary ( used in negative statements )

“You don’t need to thank me; I’m happy to help whenever I can.”
3. transitive and intransitive verb deserve something: to deserve something, especially as punishment ( informal )

“Those troops need to be shown who’s boss.”
4. intransitive verb to be essential: to be essential or necessary to something ( archaic )

Therefore when you “need” someone or something you can replace the word “need” with:  demand, require, call for, necessitate, take, have to, must, should or ought.

When I think of wants and needs, I think of a desire (want) to fill what’s lacking or absent vs. something essential or necessary either to survival or something more basic, such as a requirement (need) to complete a recipe.

So why am I going to such extremes to show you the difference between wants and NEEDS? Well I think it’s important for everyone to know that food, air, water, love and shelter are needs and that candy, ice cream, shoes to match every outfit, and a designer purse are all WANTS.

In my life, just like in every one’s life, I have a WANT list. Many people make the list around the holiday season for loved ones to know what to buy for them. I make my WANT list more so to realize that material things are nice to hope and wish for, but they are definitely not the most important things in this world. I put things on my WANT list like outfits for belly dance, velour jogging suits, I-PAD, smart phone, new shoes, hair accessories, new furniture, new TV, etc.

Now to take this in a little different direction…I went to my hip orthopaedic surgeon on Jan. 4th because I was having increased hip and groin pain. My right hip was sticking more when I went from the seated position to the standing position. I was extremely concerned because 8 1/2 years ago, this is what it felt like right before my left hip completely collapsed. It collapsed in August 2003 and was replaced December 22, 2003. I began to prepare myself for what the doctor was going to say, all the while hoping that he would end up telling me that it was still the same as it was in May of 2011.  Well, my fears were correct. It is just about to collapse. The hip is a ball-in-socket joint so the hip is able to move in a full circle inside the socket. For me, the socket is resting on the ball, which is already flattened (not round), and the ball has a crack all the way through it. Imagine what the pressure is like on that ball! With all that pressure and a crack all the way through, it does not take a genius to figure out that it could collapse at any moment!

When I found this out, I didn’t freak out at all. I had prepared myself for this, and we knew this was going to happen sooner or later. I was prepared to an extent, but you just can’t prepare yourself for that specific day to be told that you NEED to have your hip replaced as soon as possible. I WANTED it to be when my son Michael was old enough to feed, dress, and bathe himself, but perhaps that is asking too much. Ideally, we would be in a city with lots of family and all my friends to be able to jump in to help us out, but again, that just isn’t in our cards. It would be super if after this hip replacement, I would not NEED anymore joint replacements. Sadly, I am still playing the waiting game with my left shoulder and both of my knees, not to mention that joint replacements do not last forever. They are also replaceable. My left hip is now 8 YEARS OLD! I was told it would only last about 10 years. OMG! I do not WANT to have a hip replacement done two years apart, even if they are on two different legs.

I WANT the surgery to go smoothly without complications~no problems with infection, placement, blood pressure, etc. I WANT to heal quickly. I WANT to be able to have physical therapy that restores my physical activity and range of motion to normal level. I WANT to heal in three months so that we won’t have to hire someone to come into our home after my hubby goes back to work for the fall semester. I WANT this new hip to make both legs equal in size. I WANT to get rid of the pain. I WANT to be able to return to belly dancing relatively quickly after the hip replacement~told you I was a type A personality! I don’t WANT to have to start all over again with walking, going up steps, driving, swimming, lifting my leg, bending my knee, sitting, standing, riding a stationary bike, then slowly lifting things, then going back to a normal day of cooking, cleaning, taking care of a baby (diapers, bathing, feeding, playing on the floor, chasing, carrying, etc.).

I NEED help with my son who is now 13 months old. This is what is giving me the most anxiety, however, we have it all planned and everything is in the works. I go in for surgery on May 10th, and my mother-in-law arrives here in town on May 8th. She is off work all the time on Tuesdays, Wednesdays and Thursdays so to come in town she will take her vacation days in chunks. She will start her days off May 11th through the 14th, then the 18th through the 21st, then the 25th through the 28th, and so on…She will be here for the majority of May and most importantly on my surgery day and while I’m in the hospital so my hubby can be with me in the hospital while she’s with Michael. I will still NEED help in June, July and August. In June, my parents will figure out their schedules to come here. I have lined up others to come in the other months. In August, we will fly to St. Louis so my hubby can go to Memphis for a bachelor party. This way, I will have lots of family and friends to still help toward the end of my recovery. I have put Mick on a wait list for full time daycare for the summer months. If we struggle at all, we will hire a nanny to help with Mick’s care. After May, I should be doing most of my own care myself except driving and bathing. I will still be unable to lift 10 pounds, so no lifting up Mick! That will be the challenge.

Anytime you have an illness or surgery that prevents you from taking care of yourself and others like you normally do, you are forced to rely on others. Although I have been through a hip replacement surgery before and a shoulder replacement as well (as a matter of fact, I have had 9 surgeries in all plus this one now). We have been away from family and old friends for 7 of these surgeries and have done OK by ourselves so far. The thing is that we have never had a child until now. So now we especially NEED the help of others for the sake of our son! Well, we have not had to even ask a single person for help.

I find it interesting, and mentioned this in my blogtalkradio show, that when you have really wonderful, true friends who know that you are in NEED of help, they tend to pass the word on to everyone they know that you are in NEED whether they know you or of you or not. They tell their friends, their friends’ friends, their brothers, sisters, moms, dads, uncles, cousins, church members, members of their book club, people that serve them coffee, etc. Then all of a sudden, you are getting dinners from people that you think are coming out from under the rugs.  Well, they actually aren’t coming out from under the rugs. These people are coming to help you, because of people that love you very much. They know you are in NEED because of these beautiful, loving people.

I must have the best friends anyone could ask for! I have had so many friends and people I hardly know or have never met until now offer to help us out during the surgery and after the surgery and even now since I am having difficulty with my range of motion and getting around. Thank you, Angela and Rob, Kelbi and Sam, Susan, Samantha, Samantha and Troy, Debbie, Sarah, Rachana, Grace…and family~Mary Lynn, Mom, Dad, Ricky, Beth, Debbie…and my online friends as well who cannot help in person but in spirit and with support~Cookie, Brenna, Wendy…oh gosh there are so many of you, I could go on and on…if your name isn’t on here it is written on my heart! You must know that with friends like you all I don’t NEED anything more!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I truly love you all! Isn’t it wonderful to know you are NEEDED? Guess what? You are also WANTED! I chose you all as my friends, so you all are NEEDED and WANTED, both such great honors!

How Do I Know I Have A.S. By Dana

Posted in The Blogs By Dana, Week 10: Symptoms on January 19, 2012 by Cookie Has A.S.

This is my next entry to post for the MOWer’s blog. The subject is Symptoms. Wow! What a topic!

If you get symptoms of a cold, you see your internist, primary or family doctor. Symptoms of a cold are pretty simple and well-known: stuffy, runny nose, scratchy throat, post-nasal drip, etc. It’s interesting, but if you tell someone you have a cold, they know what symptoms you have already, and there are the traditional treatments as well. You can take a decongestant, drink tea with honey and lemon, take Tylenol if you run a fever or if you have a sore throat even. For all of us with spondyloarthropathies, symptoms can be as different from each other as night and day, as hard to notice from one person to the next, and often stump doctors, even those that specialize in our rare problems~the rheumatologists.
I have been dealing with what I thought at some points in time were unrelated symptoms, then at other times began to swear up and down that everything I have been through in all my years have been related to the spondyloarthropathies that I (will) have been diagnosed with finally! The most difficult issue with all of this is that when you go to the doctor with 1 or 2 symptoms at a time, the frustration will blow your mind. It isn’t cut and dry. There is no certainty that your doctor will give you a diagnosis or even treat you for that matter. Meanwhile, you are trapped in a world of pain, weakness, disability, loss of your old self, and a feeling that you could even be losing your mind! One thing is for sure, no matter what symptoms you end up with if you are lucky enough to have one or more spondyloarthropathy, the physical symptoms will be there, and they might be similar to those you meet in the same situation, but you may also notice that they all end up questioning their mental state! Yes, it’s true!

When you have certain physical symptoms and no lab tests or x-rays or similar tests to back them up, doctors begin to question automatically if you really have these physical symptoms or if they are manifestations of something else going on~depression, anxiety, a psychiatric condition, or perhaps you appear to have drug-seeking behaviors because you are showing no real signs of pain but wanting something for pain! Well, with all of this, it is only natural to begin questioning yourself, “Am I really feeling these symptoms? Is my neck really this stiff? Is my lower back hurting so bad, I cannot sleep at night? Are the bottoms of my feet so painful that if feels like I am walking on hot coals? Are my joints really so stiff and sore that I can’t move them for 2 hours after I awaken in the morning?” When we can’t really answer yes or no definitively, it gets pretty scary for us!!!

The symptoms are real, don’t get me wrong, and I am in no way trying to make them seem unreal or to make light of spondyloarthropathies or their symptoms. After all, I am a person with spondyloarthropothies, and I know how real they are and that the symptoms are definitely REAL!! So now let me just talk to you a little bit about what I had to go through to finally get someone, anyone, to listen to me about my symptoms. Spondyloarthropathies tend to attack the body’s major joints, primarily were ligaments attach to bone. Like myself, many who suffer from a spondyloarthropathy condition are likely to experience pain and reduced mobility in the ankles, knees, hips and lower back that is much more significant in the morning or when waking. These symptoms may become less severe as the day progresses and have often been much less severe following exercise. Patients, like myself, suffering from spondyloarthropathy may also experience pain or stiffness in the shoulders and wrists that follows the same progressive improvement in severity as the other joint pain. Patients may also experience pleuritic chest pain which is characterized by pain in the chest area that may or may not be accompanied with breathing difficulty. It also can be due to costochondritis, which I have often and is very, very painful!!! This symptom alone is not enough to diagnose a spondyloarthropathy as this form of chest pain is also a common symptom of pneumonia, viral illness, a pulmonary embolism, heart attack, lung cancer or a pleural tumor. For that reason, any chest pain should be considered serious and warrants a doctor’s immediate attention for further testing to rule out anything that is critical and must be addressed immediately.

Weight loss, fever and fatigue are also common symptoms that present with all of the spondyloarthropathy conditions. I would say that for me, in the earlier stages, weight loss was severe. Then I began to gain weight as the disease progressed. Fever and fatigue has been around for as long as I can remember. I have daily fevers, low-grade, in the late afternoon and during the night. Fatigue continues to be a problem for me. Although medications have helped, I still continue to get exhausted and tire easily. I have very little energy, and I also do not sleep well which only makes the problem worse. Some spondyloarthropathies may also cause what is commonly known as sausage digit–a swelling of the fingers or toes. I had the sausage digits on a couple of my toes, which finally went away after starting on a biologic–Remicade. Some patients will also suffer from a heart murmur that will need to be monitored by a doctor as well. I have a history of a heart murmur that comes and goes.

Rheumatoid arthritis is likely the medical condition most commonly confused with spondyloarthropathy but is generally able to be ruled out by tests that reveal the rheumatoid factor is not present in the patient’s blood. Of course, this is not always the case because even those people with RA do not always test positive for the rheumatoid factor. Also, since it is quite possible that spondyloarthropathies run in families, a patient’s family history is also a good indicator of whether or not their condition is a spondyloarthropathy or rheumatoid arthritis. Again, this is not always true either because many of us have no one in our families with a spondyloarthropathy. We do not know, however, if this is the case because there truly is no one in our family history with a spondyloarthropathy or if there is a family history, and perhaps no one ever did anything about it~diagnosis, treatment, etc.

Initially, a patient suffering from spondyloarthropathy will experience pain or stiffness in the lower back; especially in the morning. That pain or stiffness will often gradually feel better throughout the day or following a period of exercise. Fatigue is also a common indicator that someone is suffering from this condition. They may feel worn out more quickly than previously or may feel tired much more often. In time the pain and stiffness in the lower back will spread further into the lower back and the buttocks. Treatment will likely not eliminate the symptoms entirely but should allow relief and prevent the condition from progressing further as quickly. Nothing has been proven to stop the progression of the condition entirely, but treatment will at least slow down the process. For many women, the first symptom is pain and stiffness in the neck, before the lower back, which does not mean that the lower back isn’t experiencing any problems. Many times, by the time, they feel symptoms in the lower back, the damage is already severe.

Because a major component of the eye is collagen just like the ligaments, tendons and tissue within joint spaces, it is reasonable to think that the eye would also be affected by the symptoms of spondylitis just like the joints. Thirty percent of people with spondylitis have had or will develop a potentially serious inflammation of the eye called iritis. (Acute anterior uveitis and iridocyclitis are additional medical terms to describe iritis.) I have had iritis/uveitis four times. Three of the four times I knew what to look for, but the first time, I didn’t even know that the inflammation was occurring. I was at my ophthalmologist for my yearly check up when it was found. This condition can cause blindness if not treated properly, so it is essential for you to recognize its signs and symptoms , and understand the important role you play in your eye health care. Symptoms often occur in one eye at a time, and they may include redness, pain, sensitivity to light, and skewed vision. By using a slit-lamp microscope, an ophthalmologist or specially trained optometrist can distinguish iritis from other causes of eye redness (such as from an allergy, trauma, or viral infection).[http://www.spondylitis.org/members/03.aspx?PgSrch=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 ankylosing spondylitis (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. Advanced symptoms can be chronic, severe pain and stiffness in the back, spine and possibly peripheral joints, as well as lack of spinal mobility because of chronic inflammation and possible spinal fusion. [http://www.spondylitis.org/about/as_sym.aspx]

I have had symptoms of inflammatory back/pelvis pain, unilateral or alternating buttock pain, enethesitis–inflammation where a tendon or ligament attaches to the bone, peripheral arthritis, arthritis of the small joints, heel pain, fatigue, the scaly patches on the skin caused by psoriasis, skin rashes that commonly appear as thickened red or brown spots, scaling rashes on the palms of the hands or soles of the feet, pain and swelling in the fingers or toes, sometimes the swelling causing a “sausage” appearance, small indentations, lifting and /or discoloration of the fingernails or toenails, fingernails and toenails which may become thickened and crumble as if infected by fungus, pain and swelling in the joints, pain and stiffness of the spine, especially after prolonged inactivity, fever and chills, cystitis, which is an inflammation of the bladder or urinary tract, causing frequent urination and a burning sensation when urinating, mouth ulcers, inflammatory eye conditions of the eye such as iritis/uveitis or conjunctivitis which can cause redness, pain, blurred vision and sensitivity to light. I was told that I have sacroiliac joint involvement. I was also told several years ago that where the spine meets the pelvis looks like it was crushed in an automobile accident when I had an MRI done. I never had my pelvis/SI joints crushed in an auto accident.

There are several types of spondyloarthropathies, and a big difference is age of onset and which sex it affects more. General onset of AS commonly occurs in younger people, between the ages of 17-45. However, it can affect children and those who are much older. AS is more common in men, but occurs in women as well. Most individuals who have AS also have a gene that produces a “genetic marker”– in this case, a protein– called HLA-B27. This marker is found in over 95% of people in the Caucasian population with AS (the association between ankylosing spondylitis and HLA-B27 varies greatly between ethnic and racial groups. It is important to note, however, that you do not have to be HLA-B27 positive to have AS. Also, a majority of the people with this marker never contract ankylosing spondylitis. Undifferentiated spondyloarthritis has an onset of the disease which is insidious and, even years of disease inflammation or calcification of the sacroiliac joints (the joints where the spine meets the pelvis) is often absent or mild on routine x-rays. According to some experts, the age of onset is very wide and tends to peak at age 50. Unlike AS, USpA is more common in females and only 20-25% of people with USpA are HLA-B27 positive. Some people with undifferentiated spondyloarthropathy later develop symptoms of the other forms of spondylitis, such as AS, but many will continue to have chronic, but not severe symptoms, and remain “undifferentiated.” [http://www.spondylitis.org/about/undif.aspx]

In juvenile spondyloarthritis, sometimes the symptoms are episodic and unpredictable, seeming to come and go without an obvious cause over a long period of time. This cycle of disease flare up followed by remission may be repeated many times. It is important to note that the disease progression and the severity of symptoms vary in each person. Some children may experience a mild, short-term disease, whereas others experience a severe, long-term and disabling condition. The more common symptoms of juvenile spondyloarthritis include arthritic pain, especially around the heels or toes, around the knee and in the lower back. Frequently, the first symptom is pain at the site where ligaments and tendons attach to the bone (the inflammation at this location is called enthesitis). Months or years later, other joints may be affected, particularly joints of the spine or sacroiliac (SI) joints – the joints at the base of the spine, where the spine meets the pelvis. At the beginning of the disease, children often have inflamed, swollen joints like the knees and ankles, but in adults, the spine is more likely to be involved. This inflammation can cause permanent damage if left untreated.  Sometimes children with spondyloarthritis develop other symptoms as well. These include fever, psoriasis (a chronic skin rash), other rashes, colitis or Crohn’s disease (inflammation of the intestines), and iritis (inflammation involving the eye). Rare complications may affect the heart, kidneys, or spinal cord. It is also important to know the exact cause is unknown, but genetics do play a key role. Much like in adult-onset spondyloarthropathies, the genetic marker, HLA-B27 is often found in those with JSpa. [http://www.spondylitis.org/about/juvenile.aspx]

About 20% of people who develop Psoriatic Arthritis will eventually have spinal involvement, which is called psoriatic spondylitis. The inflammation in the spine can lead to complete fusion – as in ankylosing spondylitis – or skip areas where, for example, only the lower back and neck are involved. Those with spinal involvement are most likely to test positive for the HLA-B27 genetic marker. The symptoms of psoriasis include scaly red patches appearing anywhere on the body, but often on the scalp, elbows, knees and lower end of the backbone. In psoriatic arthritis, the skin condition is accompanied by arthritis symptoms:  the scaly patches on the skin caused by psoriasis; pain and swelling in the fingers or toes, sometimes the swelling causing a “sausage” appearance; small indentations, lifting and /or discoloration of the fingernails or toenails; pain and swelling in the joints; pain and stiffness of the spine, especially after prolonged inactivity; inflammatory eye conditions of the eye such as iritis or conjunctivitis which can cause redness, pain, blurred vision and sensitivity to light. [http://www.spondylitis.org/about/psoriatic.aspx]

Reactive Arthritis usually develops 2-4 weeks after the infection. A tendency exists for more severe and long-term disease in patients who do test positive for HLA-B27 as well as those who have a family history of the disease. Symptoms include: pain, swelling and stiffness in the joints including the knees, ankles and feet; skin rashes that commonly appear as thickened red or brown spots, scaling rashes on the palms of the hands or soles of the feet, or a red scaling rash on the penis;  involved fingers and toes that often swell, causing the so-called “sausage digits;” fingernails and toenails which may become thickened and crumble as if infected by fungus; fever and chills; inflammation of the eye (conjunctivitis, uveitis or iritis) that can cause redness, pain, sensitivity to light and skewed vision; enthesopathy – inflammation where the tendon attaches to the bone; inflammation and pain in the lower back or pelvic area; cystitis, which is an inflammation of the bladder or urinary tract, causing frequent urination and a burning sensation when urinating; genital sores appearing on the shaft of the penis or scrotum, or in women, on the external areas of the genitals. These are usually blisters that break open and crust over. Although they heal without scarring, these blisters can be a source of great anxiety in those with ReA. [http://www.spondylitis.org/about/reactive.aspx]

Ankylosing spondylitis and related diseases tend to run in families, so there is a genetic factor involved as well. Those who test positive for the HLA-B27 genetic marker are much more likely to have spinal involvement with enteropathic arthritis than those who test negative. Ulcerative colitis and Crohn’s disease are the two types of IBD most commonly associated with enteropathic arthritis in spondylitis. Abdominal pain and bloody diarrhea are the most common symptoms of IBD.  Arthritis symptoms may precede the IBD symptoms. About one in five people with enteropathic arthritis will have inflammatory arthritis in one or more peripheral (limb) joints such as an arm or leg, although the lower limbs are more commonly affected. The severity of the peripheral arthritis normally coincides with the severity of the IBD, thus when diarrhea and abdominal pain are flaring, the peripheral arthritis tends to flare as well.  About one in six people with IBD also has spinal inflammation, although this inflammation is independent of the severity of the bowel disease symptoms. In many, this may just be arthritis in the sacroiliac (SI) joints, but in about five percent of people, the entire spine is involved, as it is in AS.[http://www.spondylitis.org/about/ibd.aspx]

When I was writing this, I kept thinking that I should have a site like Google just for symptoms. It would be like an online search tool for symptoms only, but it wold only be for symptoms~kind of like Web MD’s search tool. The part that would be most interesting is that it would come from me since I’ve actually experienced most of the symptoms myself. It would be like asking me personally~have you had this symptom Dana Morningstar? How did it feel? What did the doctors tell you? What did you do about it? Could you give me some advice? It would be so cool?….Someday in the future I hope…

My Disabled Parking Spot Is A Micro By Dana

Posted in The Blogs By Dana, Week 09: Social Outings on September 5, 2011 by Cookie Has A.S.

My heart races, my palms sweat, and I worry about how long I will last. Will I feel well enough to make it through a full dinner, sitting in a chair at a table in a restaurant?  Will there be a place to sit at the party we are attending? What is the parking like? Do we park on the street; will it be a close enough spot so I won’t have to walk far? Can I wear my awesome new shoes, or will I be stuck standing in the corner praying that we leave soon so I can cut my feet out of my shoes? The history of my family’s nationality is Italian (Sicilian), Irish, German, and my very own history is that I was born on Nov. 3rd, making me a Scorpio, born in the year of the Tiger. What does all that mean? Well, I’m normally outgoing, happy, funny, everybody knows me, the life of the party, easy-going, and loud!

I was always the person that loved a party. I enjoyed throwing a party and going to one. I still do, but just not the same as I did years ago. I was even thrilled with the prepping for the party; still am, but it’s so different now. I used to decide last minute to have friends over, or I’d jump at the chance to go over to a friend’s spur of the moment. First of all, so much planning is involved just in my day-to-day life now that adding any new tasks, activities, etc. involves extensive planning. Besides extra planning, I also have to take into account that I will need to set aside more rest periods and break because I will be doing more in the time allotted for my normal activities of the day. I can’t add more time to my day. That would be perfect!

Usually with social outings, I want to look good. If we are going out, I want to take some time to fix my hair and make-up and put on an outfit that makes me look confident, strong, will make heads turn, and so people will be talking about me the next day (and not about the fact that I limp, the size of my scar on my right arm, if I look like I’m getting enough sleep, about my weight–up or down–or their opinion about the status of my arthritis and physical condition in general). I want people to talk about me as a person, as Dana, not as my chronic illnesses. I want them to notice how awesome I am and like me for me! That is what I look forward to when we have social outings. That is why I love to go out with my hubby and friends. I forget about being sick for a brief moment. Others see me for me. Problem is that my illnesses are a part of who I am, and they don’t go away just because I forget about them for a while. I am not my chronic illnesses; they are not me; but we are partners in a sense.

Certain things that others may take for granted, I have to struggle with daily. I can choose not to wear make-up which is a lot easier for me because it is painful for my hands, fingers and wrists to put on make-up. Normally, I just wash and brush my hair and then let it dry~easy shmeezy! When we are getting ready to go out somewhere, I have to one-up myself. Make-up application can be a painful procedure, but when I have a psoriasis flare, which I have been struggling with for almost 4 months now since June, I have to deal with how to apply my make-up. It is a difficult process, a tedious one and requires several careful steps. First, I wash my face with a gentle scrub to remove as many skin flakes as possible, and the gentle scrub doesn’t irritate the skin. I pat my face dry, and then I apply a moisturizer for eczema/psoriasis prone skin. I let that soak in a bit. Then I apply my psoriasis steroid lotion. It’s thin so make-up goes over it pretty easily. I use all Physician’s Formula products for my make-up and apply a very thin layer of green pre-treatment to cover the redness. Then I apply a thin layer of light liquid foundation. Then I use a powder that is translucent with yellows and greens in it to again cover any redness that is still visible. Then I use a buff beige or creamy natural colored powder compact. I brush gently over my entire face to remove any excess powder. Then I apply a light bronzer to bring a little life and light back into my skin. Then I add some rose colored blush to my cheeks and eyelids. Then I am done. I still am flaky a bit, and I still have some redness and itchy/painful skin, but the difference is like night and day!

Then there is the hair…I usually am so worn out from doing my make-up, that I don’t have much strength left in me to do much to my hair. I have straight hair, but I use a flat iron to flip the ends out or curl them under. I also curl my bangs under with it. I have a long, asymmetrical hair style with bangs. It is pretty simple to style. It looks pretty when I use the flat iron, and as long as I am caught up with coloring my hair (dark auburn), I’m good. If my hair needs to be dyed, I use Clairol’s Natural Instincts 30R. Otherwise, if I fall behind, I have gray roots. I just experienced that, and I do NOT want to go there AGAIN!!!! All my roots are so gray now, almost white. They are so coarse and break easily. Some are about an inch long from the root and stick straight up from my part. OMG! They are so noticeable. I used to pull the gray hairs out before a social outing. Now, there are too many to count let alone pull out.

With my horrible psoriasis flare, I couldn’t dye my hair because it was on my scalp. I didn’t want to put any chemicals on my head with open sores and wounds from the psoriasis rash on my scalp. That would be all I needed~an infection on top of the psoriasis. So I waited and waited for the scalp to clear up. The first day that the scalp was clear of the psoriasis, I tore open a box of Clairol’s Natural Instincts, and away I went with the application!  Funny bit of info~the only time I wear my contacts is for a really elegant event like a wedding or gala…… AND…..when I dye my hair. Why?…because I can’t see but a couple inches in front of my face. I wear glasses all the time. I have contacts for those special events, but I really can’t wear contacts because of the Sjogren’s. I make next to no tears at all. The tears that I do make do not contain the oily lubricant. They are just salt water. Just thought I would give ya that little bit of info about me. Kinda funny I think. Most people would take their contacts out for fear they might get the dye in their eyes and get it under their contacts. I put my contacts in specifically for the dye-job. Hmmm….hope I didn’t just jinx myself. I haven’t gotten any in my eyes yet…

So for me, social outings can be fun, but in order for me to enjoy myself, I have to be fully prepared. I have to be fully rested. Not only for the party, but rested enough to prepare for the party to have enough energy for the prep and for the party itself. I also need to remember that prep might include my getting ready, food preparation, cleaning and straightening our home, decorating, and now that I have a baby, getting him dressed and ready for the outing or for the babysitter. Wow, just by putting it all in writing makes me exhausted!

I really wish that my family and friends that see me at these social outings and events could walk in my shoes for a day or a week or a month. ( I really, REALLY wish if they walked in my shoes for a while that during that time, I could borrow their shoes and switch places and be normal for a bit. Phew. That would be such a relief!) Sometimes it is so hard to imagine what it takes for someone who is in chronic pain, who has several chronic illnesses at once to deal with, is disabled and on top of it all has a baby! Now I know I chose to have a baby. Don’t write any comments about that little, teeny, tiny part of the sentence. I am just expressing to those that are not chronic babes out there everything we deal with on top of a life as a mommy, which is fairly normal. We do have the right to live a life like those that are fairly normal. I hope you all agree with that!

That is why we will go through hell to cook and clean, and put layer upon layer of  pre-treatment and make-up, dye our coarse, gray hair (most likely caused from all the medications and anesthesia). We want to enjoy our lives. We need the social interaction, whether it is with healthy, “normal” people, or with people that are going through similar chronic conditions like us.

I don’t always go to social outings with “normal” people. I also go out with my “like” friends. Although I like the social outings that take my mind off being sick and help me feel normal for a moment, I also actually enjoy going out with my “like” friends to be myself in another direction completely. Those are the social outings when I don’t have the energy to cover the psoriasis, and have my gray roots that are 2 inches thick. We limp along together, and sometimes get looks from others. These are the social outings that others look at me for me when I DON’T look good. This is when my illness is not so invisible, and for once in a great while I look sick. I have a few “normal” friends that I can show this side of me with when we go to social outings, but with most I prefer to hide as much of the chronic side of me that I can when we are in public shopping, partying, having dinner, celebrating, or whatever we are enjoying together.

Sadly, many people who say they love you no matter what, will be a shoulder for you to cry, will hold your hair while you get sick from your chemo, will have a pajama day with you everyday whereby no one wears any make-up or does their hair; but the moment you are invited to an important social event together, they do not want to be seen with you if you are not going to be able to do something about covering up that skin condition (psoriasis) that looks like the horrible acne you had back in high school. They don’t understand why you won’t go ahead and cover your grays with the dye. Psoriasis is “just really dry skin on your scalp, right? So how could dye harm it?” They don’t want to take the time to understand your illness, so they just make assumptions which are incorrect, and as I was always told about when you assume, you make an ASS out of U and ME! Psoriasis is not acne. When it is on the face, it does resemble it. It can be severe. It can bleed. It can scab and scar. It can look like raw meat and pizza face like the awful names kids called each other in high school with severe acne, but it is not acne. It is not caused from being dirty. Washing your face more will not clear up your skin. These are all things that have happened to me, real things that people have said to me, actual words from “normal” people who are not sick. These are hurtful things. This is why it can be hard sometimes to go to social outings with “normal” people, and why it is a lot easier to go with “like” chronic babes!

This isn’t always the case though. I just want to stress that I do enjoy going out with my “normal” friends that treat me like a person, like I mentioned in the beginning of this blog post. That is why I am able to forget for the moment that I’m sick. They treat me like I’m not sick. That is what is so fun about it. I get all dressed up and spiffy, and then my “normal” friends treat me normal! So ya see, it is hard for us chronic babes to live in both worlds. Best case scenario is to be able to bounce in and out of both worlds from the “normal” world back into our “chronic” world. It takes practice, and trial and error. Find what pace works best for you, and how often you can leave your chronic world to go to “normal” social outings. Also, make sure that you are treated equally in the “normal” world. If you aren’t, it isn’t worth your time and effort. You would be using a lot of energy preparing to go and then actually attending for something that you would be getting nothing but heartache and pain from.

It makes me think of all the times that I park in my disabled parking spot…

So many times I have gotten out of the car, and someone has said to me not to park in a disabled spot because it was for someone that needed it. Each time, the person thought there was nothing wrong with me to cause me to park in a disabled spot. Of course, I have many, many things wrong with me physically, and in fact, have 2 joint replacements, and I am awaiting the collapse of 4 other ones at any moment to then have them replaced. There are some days that are better days (I rarely use  the term good days), and on these days, I may still park in a disabled spot (because I am still disabled even if I’m having a better day), but I will most likely have my make-up on, be dressed nicely, and have my hair done and dyed! On bad days, I again will be in the disabled spot, but on those particular days, I will very likely be in sweats or lounge wear, will have no make-up on, and will definitely have my hair in a ponytail with my bangs clipped back. The disabled parking spot is a microcosm of my life in regards to social outings and how people look at me and treat me when I go out.

Friendships By Dana

Posted in The Blogs By Dana, Week 08: Friendships on August 29, 2011 by Cookie Has A.S.

For this MOWer’s blog carnival, the topic is friendship. I have had a lot of time to think about friends and friendship since I’m behind in writing my blog posts for this particular blog carnival. Thank goodness this group isn’t strict on due dates! I would be in trouble if that were the case because I have so much that I would like to share with this group, and I am grateful for these special friends that I have made online for adding my posts after the fact~after doing all that work. One particular friend, Cookie, finds the time to add my posts, corrects my grammar, and carefully reads and re-reads each of my posts over and over again to make sure it looks the way that I wrote it on my blog. She has even typed it out one word at a time if it didn’t look JUST the way it looked on my own blog site. She is an amazing woman and friend. I’m so glad I met her. I look forward to “hearing” from her online daily, and worry when I don’t. She does the same. That is a true friend! Thanks again, Cookie, for being such a great, dear friend to me. ;D

According to Wikipedia,
Friendship is defined as…

…a form of an
interpersonal relationship generally considered to be closer than association,
although there is a range of degrees of intimacy in both friendships and
associations. Friendship and association are often thought of as spanning across
the same continuum. The study of friendship is included in the fields of
sociology, social psychology, anthropology, philosophy, and zoology. Various
academic theories of friendship have been proposed, among which are social
exchange theory, equity theory, relational dialectics, and attachment styles.
Value that is found in friendships is often the result of a friend demonstrating
the following on a consistent basis:

  • The tendency to desire what is best for the other
  • Sympathy and empathy
  • Honesty, perhaps in situations where it may be difficult for others to speak
    the truth, especially in terms of pointing out the perceived faults of one’s
    counterpart
  • Mutual understanding and compassion; ability to go to each other for
    emotional support
  • Enjoyment of each other’s company
  • Trust in one another
  • Positive reciprocity — a relationship is based on equal give and take
    between the two parties.
  • The ability to be oneself, express one’s feelings and make mistakes without
    fear of judgement.
  • It is very important to have honesty, trust, sympathy, respect and
    helpfulness in friendship.

All those fantastic fields that I mentioned above are studying and researching the impact of friendships’ influence on our well-being and happiness. We cannot deny that having strong social supports helps us, especially women, feel better. People live longer, healthier lives when they have friends, especially strong, bonding friendships. No one knows if friendships actually lead to better health, if there truly is a correlation, a cause-and-effect relationship. There have been plenty of  theories though. One theory is that if you have a good friend that leads a healthy lifestyle, he/she will then encourage you to also lead a healthy lifestyle as well. Another theory is that good friends better enhance your coping skills to deal with illness and health problems. Still another theory is that good friends encourage you to seek out help and to access health care and other health services. And the final theory is that there are actually physiological pathways protective of health that good friends affect. Friendship is believed to protect both physical and mental health. Loneliness and lack of friendships have been shown to be linked with more heart disease, viruses, and cancer as well as higher mortality rates.

Friendship is an interpersonal relationship also found in animals~mainly mammals and birds. Cross-species friendships can develop between a human and a domestic animal~a dog or a cat. Sometimes friendships develop between an animal and another animal of a different species. I can say that I have and have had friendships with my dogs. Max was my very close furry friend and buddy who is no longer with me! Cookie (different from before-mentioned Cookie) is still my furry friend and now my son Michael’s best friend! I have neighbors with a cat and a dog where the cat and dog are best of friends as well. Also, many times, we have seen a dog and a horse or another farm animal that the dog has befriended. Friendship crosses over too when a dog nurses another animal’s babies to health even when it isn’t another dog. Amazing stories come out of things like this too!

I recently blogged about my bestest friends~Ang, Susan, Kelbi, and Carlene. Each one of these people has brought so much to my life, has entered my life at different times,–perfect times actually–and each one of them is as strong of a woman (or Babe) as the next one! I have known Ang since we were 6 years old. Ang is the type of friend that I can have a no-holds barred kind of fun with. She is also the kind of friend I can trust with my deepest darkest secrets. She knows how to bring me out of my lowest points and how to make me laugh until I pee my pants! She supports me when I fear no one else will. I can text her at 3 a.m. She has come to visit me~jumped on a plane at a moment’s notice~because I need a friend, because she wants to share my excitement, because I need a shoulder to lean on, or just because she wants to take a trip somewhere fun or go to a concert–in a two bedroom apartment on a sofa bed in the sunroom or on an air mattress in my baby’s room to help with and play with him during the day and then watch a scary movie or two with me at night!!! Kelbi, Susan and Carlene all share my pain. I mean they all have a form of arthritis and fibromyalgia. I am able to call or email them any time of the day to talk about anything. It is especially wonderful to have friends who share something like this because they understand exactly what it’s like to not be able to get out of bed, to cancel appointments, to feel so fatigued you can’t even wash a bowl in the sink or stand to take a shower. They just “get me.” It is sad that what brought Carlene and Kelbi to me was the Arthritis Foundation. If it weren’t for our disabling conditions and wanting to help other young adults and other people learn to help themselves to deal with the pain and fatigue, we may have never met. If I didn’t have arthritis, I wouldn’t have been seeing a counselor, and I wouldn’t have been introduced to Susan. I have four Bestest Friends: Ang, Kelbi, Susan and Carlene. They each have entered my life at different times, in different ways, for different reasons~all staying to support me, love me, care for me, understand me, and always be there for me!!! Thank you so much. What would I ever do, where would I ever be, and how could I ever go on without you all? Please read more about them in my previous, more detailed blog about all four of these fantabulous friends in “My Bestest Friends!”

Also, please read more about my hubby; he is my lover~true~but we started out as friends. When we were married 11 years ago, we shared this quote with everyone, and it really summed everything up for us:

This day I marry my friend, The one I laugh with. Live for, Dream with, and LOVE!

Eleven years married~seventeen together~we still laugh together, live for one another, share our dreams, and love one another more and more each day. We are true friends with a romantic love for one another. To learn more about my significant other and how much he means to me, please read my poem to him, “Significant Other~Will Never Your Eyes, Soul, Heart Forget!!!!”

I began blogging to help myself. I thought of it more like journaling, the difference was that others had access to it. I didn’t even think anyone would read it~ever! I didn’t think anyone would be interested in my pathetic, boring life. I also started blogging before I did anything else online. I had an email address, and that was all. My grade school was searching and searching for me for our 20 year Grade School Reunion from 8th grade. Most didn’t know that I moved to Georgia from Missouri (with a couple stops along the way in fact). Most didn’t even know I was married. Almost no one knew I was in chronic pain, had chronic fatigue, was sick all the time, and had already had one joint replacement at that time, and was well on my way toward more. I basically thought no one would understand, no one would want to be burdened by me, and I would just end up being a bother t0 everyone. My life seemed to stand still, although we had moved several times. I had gone to a university and gotten my BS in Nursing. I had worked as an RN for a short while, and my hubby had also worked after getting his Ph.D. He was on his 2nd tenure-tracked position. We still had no children, and we had been trying to adopt in every state we lived~no luck!

Somehow I found out that people were searching for me through Classmates.com. I found out that people wanted me to go on Facebook so they could find me easier. They thought I fell off the planet! Ang, that I mentioned before, was looking for me for a few years. Her parents passed away, and she was looking to re-unite with old friends that she shared a special friendship with when she was younger. I got the search on Classmates.com. I contacted her, well when I figured out how to do instant messaging! I can’t tell you how excited I was to be chatting with her online! I didn’t even know what I was doing. I thought it was like the Jetsons at the time. I couldn’t believe it! She told me to get on Facebook as well, so I did. Before I knew it, I had become a new person. I loved it online! I was “friends” with all these people I knew from grade school, high school, and college. Then I started adding family to my “friends” list. I then started blogging more. I added my Facebook badge to my blog. Then others started asking to be my “friend” on Facebook. These people were actually reading my blog, commenting, liking what they read, and wanting to be my Facebook “friend.”
I then was being invited to join other social networks online for people with chronic pain~ChronicBabe, My Invisible Disabilities Network, Patients Like Me, etc. Then as my blog got more followers and more people knew who I was, I was introduced to this new exciting thing~blog carnivals!!! I began writing blog posts for different blog carnivals, and then I started joining people’s group pages on Facebook for their blogs as well as other Facebook pages related to chronic pain to which these other Facebook pages led me. I really started racking in the newFacebook friends online. I was up to over 1100 friends! It started getting crazy actually because I felt like I didn’t really “know” the people with whom I was friends. I decided to divide my personal Facebook into two separate profiles, one for family and friends that I actually knew and met and one for online friendships. This happened when we adopted our son Mick. It worked out well because I didn’t really want to post pics of him online for people to see that I didn’t really know anyway. Now that it has been a while, I have added to my family and friends profile online friends with whom I have built a relationship and trust. I like this so much better because I spend so much time on my family and friends Facebook profile but not very much time with my online friends profile. Some people are on both of course because they started on one and wanted to be added to the other. If you started on the family and friends and were added to the other, it was probably your choice. If you did the opposite, then I probably felt like I got to know you enough and trust you to add you to my family and friends profile. I am so happy to have you all on whatever Facebook profile you are. I care about all of you, whether I know you well enough to really love you as a true friend or care about you by association because of a common cause or interest, etc. So thank you all for that!

I find it so amazing how the internet works now. I met people on social networks other than Facebook, on Facebook itself, through my blog, through other blogs, and in groups on Facebook. I have recently looked back at old conversations and comments with people that I have met online. I have had their support and have been supporting those same people from the beginning! Our friendships are long-lived and strong. We have fought the same battle. We have lived lives so similar, so challenging, and with so many struggles. We think about people with whom we see and talk in our everyday lives that mean so much to us, and of course those friendships are special. But, I can’t believe how much my friendships have meant and still mean to me that I have made online. The nice thing about my online friends is that they are always there! I turn on my computer, and your smiling faces are all right there staring at me. I can’t tell you what that means to me. Well, I guess you all know, because you see it too!  It is a wonderful feeling to be able to find someone at any time of day anywhere in the world at your reach. I never thought I could have friends from Ireland, England, Germany, Canada and even within my own country in other states~Texas, New York, etc.~who all seem to live together inside my laptop. Thank you all for always being there.

There are so many people out there who don’t “get it.” My online friends are very important to me. Many of them are true friendships that mean as much to me as do my friendships with people that I can touch, see and go to lunch with~some even mean more to me depending on who we are talking about. There are a few groups of online friends that are going through such similar things as me healthwise or know someone going through the same thing that I am going through that they can sympathize or empathize with me. I can think of a few online individuals who I know for a fact desire what is best for me because they have told me over and over again how to take care of myself because they want to see me as well as can be. I can also even pinpoint a select few who are so honest with me that they would outright tell me to stop doing something because it’s not a good idea and do something different for myself immediately because they care about me as friends. There is a mutual understanding and compassion there, and I will always be there for them just as they are always my emotional support. I am able to be myself. I don’t have to act like someone else in their presence. I am never judged, and I do not ever judge them. We trust each other and enjoy each other’s company. And like I stated before, all of this is important to have a true friendship~honesty, trust, sympathy, respect, as well as helpfulness.

Now it doesn’t mean that I am ditching my friends in “real-life” to be with my online friends all the time. And I never said that I like the friendships in “real-life” more than my online friends either. They are just different types of friendships. The relationships are all together different, but I am still the same person. I don’t have to change, and that is super-important. All of you get to know that I like to joke even when I’m not funny. I like to talk a lot, so for my online friends, it comes across as “wordy” most likely. But, ya know, if I took out a lot of those words and adapted to this new form of “texting” and chatting, etc., well, you just wouldn’t get the “full effect” of the true “Dana.” I’m expressive. And with expressive, well, comes lots and lots of words…

Now, I was going to end here, but I feel it’s important to add that with all my talk about how important friendships are and getting to know people online, I wanted to add that I recently was introduced to a fellow blogger, Sweet Sara (Gitzen Girl). She blogged about being homebound and having Ankylosing Spondylitis. She very recently got sick, very sick, so sick that she did not get better. She passed away Saturday, September 24th at 11:14p.m. from complications of A.S.
Thank you, Sweet Sara, for becoming an online friend to so many people…

Oh So Bad I Ache! Oh My God, I’m Still Awake!!! By Dana

Posted in The Blogs By Dana, Week 07: Sleep on August 22, 2011 by Cookie Has A.S.

OK, Now it’s time for the Sleep topic for the MOWer’s blog carnival. I hope you learn a lot from this topic. I think this is an important topic for others to read about those with chronic pain/illness. It is, sadly, something that affects all of us.

What I find so interesting is that when our son was born 8 months ago, the question that was asked the most was, “Are you getting any sleep?” I always had to laugh. No, I wasn’t getting any sleep, but it wasn’t because of my sweet baby boy. He was amazing! He slept through the night since the day he left the hospital. I couldn’t believe it!

The reason it’s so interesting to me is that this seems to be the only time anyone seems to care if you are sleeping through the night, if you have a new baby. No one asks you if you have a chronic illness, especially chronic pain, if you have been able to sleep (unless the other person is also experiencing chronic pain/illness and also not sleeping). Why don’t people think to ask that question? Why is it that we would only not sleep if we have a baby? It was actually torture for me to have a baby that slept through the night from the beginning. I kept thinking, “How perfect; I’ll have someone to stay up with me through the night, and we can keep each other company. I will take care of my baby, and the baby will help keep my mind off my pain.” Well, that is what I get for trying to think ahead and plan…

I have tried it all…new mattress, flip/turn the mattress, only use the bedroom for 2 things (sex and sleep), meditate before bed, take a soothing bath before heading to sleep, Sleepytime tea, wind down and read just before bed, journaling before closing my eyes, using a TENS unit while sleeping, pain meds, sleeping meds, heat/cold on painful areas, different positions, prayer, and many more…

 

Lately it has been much, much worse. I stay on the couch, and stay online until the wee hours of the morning while my hubby and dog go to bed. My son also sleeps so soundly. He sometimes loses his pacifier, his fafie. He might whine a little. I smile, and as quickly as I can enter his room to soothe him with his favorite fafie I place it back into his soft little mouth. Thank goodness I was awake. 

 
 

My hubby gets so aggravated. He doesn’t really like to be awakened from a deep sleep, and I always get into bed around two or three a.m. He always thinks that I have just been up watching t.v. and goofing around. It is so hard for him to understand that I just can’t sleep. If I try to go to sleep when he does, I stare at nothingness. I watch the clock change from 11 to 12 to 1 to 2 to 3 to 4 to 5.  By then, I do finally doze off.  Then, he is waking up and getting ready for work. Then, my son wakes up and is ready for breakfast. Everyone is well-rested and ready to face the day. I on the other hand am even more tired than the day before…

Each day I am even more and more tired…


Because I am more tired, I am more and more fatigued..



I need to be able to place my head on a soft pillow and sleep…


I need to be able to find a position to sleep in on a good firm mattress and drift away to dreamland…

I need to actually have a dream again…



I don’t remember the last time I had a dream…


I do remember the last time I pulled an all-nighter…last night…



I forgot what it’s like to know the difference between night and day…to wake up in the morning refreshed and go to bed at the end of the day…



I want to be able to say to all the people with chronic pain/illness, “How well did you sleep last night?” instead of “How did you sleep last night?”…because I want to ask a question expecting a positive outcome rather than to ask it expecting a negative outcome…

For those of you who don’t have a problem with sleep, I have to tell you, it is the worst thing to experience. To just lay in bed and stare at a dark ceiling is miserable. The fact that the pain is keeping you up to begin with is bad, but that you are so fatigued and would give anything to just fall asleep is a different kind of pain. I lay there and want to sleep so badly that it actually hurts!!!! I pray to God to help me to drift off to sleep. I try teas, meditation, hot baths, music, medication, EVERYTHING!!!! Nothing works…And to know that if I could just get some sleep, I would feel a little better.

Sometimes if my hubby wakes in the night, and asks if I am still up, I answer yes, and keep on talking. I am just so happy that someone is up with me. It isn’t long-lasting, however. He soon falls asleep as I’m still in the middle of a story. The next day, he doesn’t even remember ever talking to me.  When I tell him about it, he gets mad that I interrupted his sleep. He doesn’t even remember!!! He isn’t tired, how did that interrupt HIS sleep?  Oh, well.

The biggest thing that I want to get across is what it feels like, why I can’t sleep, why many of us can’t sleep.  This is how it is for me:

 
The pain in so bad, I flip to my back instead.
 
On my back, my knees begin to ache,
 
Oh my God, I am still awake!
 
My feet, my feet, I can’t feel my feet!
 
They Start out numb, but then I start to feel HEAT!
 
My feet hurt so bad,
 
I feel like I could actually go mad!!!
 
MUSCLE SPASMS IN MY ASS!!
 
Please God, when will it pass?
 
I want to sleep!!!
 
The pain is beginning to make me weep.
 
Tears….
 
Fears…
 
Now crying hard.
 
I change positions, but I have to guard
 
my hip, my shoulder and elbow too.
 
Oh God, what do I do?
 
The pain is now so intense,
 
and sleep just doesn’t make any sense.
 
How do I sleep in a bed
 
that feels like rocks underneath my head?
 
Will I ever dream again
 
when my pain is so deep within?
 
It feels like my marrow is fighting back.
 
I feel like I could break if I hit the sack.
 
Burning, pounding, aching, stabbing,
 
Bruising, biting, pinching; all
 
of it I’m having!!!
 
It’s funny weird;
 
Each night, having the same things feared,
 
I want to be able to dream,
 
but need sleep, so it seems,
 
to be able to even have a dream again.
 
So when I think about where I’ve been,
 
I dream that I will someday have no pain,
 
so I can in fact dream again, all the same.
 
As for right now, when I lay in bed,
 
the pain is so bad, I often wish I was dead.

Weathering My Chronic Body’s Storms By Dana

Posted in The Blogs By Dana, Week 06: Weathering The Storm on August 15, 2011 by Cookie Has A.S.

Time for yet another MOWer’s blog carnival post.

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It’s interesting how people choose to use weather terminology for everyday occurrences.

Your room looks like a tornado hit it!

The bathtub overflowed, and now the bathroom is a flood!

The dog devoured everything; looks like a cyclone tour through here!

That child is as mean as a tsunami hitting land!

Those birds were like hail as they pecked at the roof.

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OK, you get the idea. I hope. I could go on and on. So if we could talk about anything in our daily lives so descriptively like it was something to do with the weather, imagine how we could describe our bodies. I’m not just talking about any bodies. I’m talking about weathering the storms with chronically ill bodies.

Our bodies with chronic illness go though so much and weather many, many different storms. Today, as I sit in the infusion center getting my Remicade infusion, I can tell you that my body has been through storm after storm and so many other weather conditions: rain, hail, sleet, tornado, cyclone, tsunami, blizzard, flood, torrential down-pour, icy roads, slick sidewalks, clouds, excessive heat, thunderstorms, earthquakes, windstorms, breeze, sunshine, clear skies and rainbows.

 
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It’s interesting too because so many people with chronic illnesses, especially pain and joint conditions, put the blame on different weather patterns for how they feel day to day. Many say if the barometric pattern changes suddenly so does the pain, or if it drops or rises, so does the way they feel. For me, if the pressure drops below 30, I know it. I have pain and fatigue and general malaise. If it rises above 30, I feel out of it, and my sinus pressure tends to increase. But I also feel it in my bones if there is a sudden increase or decrease in the pressure. I like to consider myself a human barometer because my body will let me know just before the pressure is going to rise, fall or change dramatically. Many times that tells me when a storm is on its way, when the humidity is coming, etc. I also don’t do well with increased humidity and precipitation, which many times happens when the pressure drops or rises. The body know!

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So enough of the literal, actual weather correlation, let’s talk about my body. How have I weathered my own storms?

RAIN

When it rains, it pours! With my body, I can start with just a little cold or allergies, and it is never anything little. Just these last couple of weeks, my allergies have been fierce. I began to cough from the post nasal drip, the coughing got worse and worse, and the pain increased. How can coughing be painful? It’s painful with a little thing that turns into a bigger thing called costochondritis. It is an inflammation of the connective tissue that attaches the ribs to the breastbone. In my case it involves more than just that but also the rest of the rib cage in the intercostal spacing. Every time I take a breath, it hurts. When I have a bad cough, it really hurts because the deep breathing is nearly impossible. I thought I was winded from my asthma, but it turns out I was feeling this way because I wasn’t allowing myself to take a deep breath. It hurt too damn bad! Who knew that joint diseases could be such a pain! Ha, I made a funny! Of course they are a pain. I mean a pain in areas like breathing. Well, they are, and people need to know this because if you have costochondritis, and you get a cough with it, it not only rains, it pours. You are looking at torrential downpours, my friends!!!

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HAIL, SLEET, ICY ROADS AND SLICK STREETS

Hail and sleet, to me, is when my body is bombarded in all areas at the same time. It happens a lot, unfortunately with chronic pain conditions. Just recently, I was driving down the road and realized I couldn’t move my right pointer finger. It was stuck, swollen and red. The pain was unbearable. Now, I know what you are thinking, “Pain in your one finger? Big flipping deal.” Well, the pain was cruel. My joint pain isn’t just like when you stub your toe, people! It is always real, absolute, moderate to severe pain. I never complain though, I just use it to educate people about chronic pain. So I had to drive with my other fingers. Later that day, I realized the way I was holding the stuck finger, started making my wrist hurt. It began to swell and get painful and swollen. Then my wrist was stuck!  As the day progressed, my elbow stuck, was swollen and red! Then the other wrist and elbow were swollen. Then my knees were red and hot. Then my ankles were both swollen. Then the bottom of my feet began to hurt so badly I could hardly walk on them. I could hardly move. I was worried earlier that day about driving. It was hard to turn the steering wheel. Now I couldn’t walk to the bathroom from the couch. It was my body weathering yet another storm. It was sleeting and hailing, and it was attacking my body alone in the middle of a hot July summer! I was driving my car on icy roads and walking on slippery sidewalks, and it was dry, sunny and super hot! Can you even imagine?

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TORNADO, CYCLONE, TSUNAMI, HURRICANE, FLOOD

I woke up knowing that I was getting a migraine. I have aura’s that tell me one is coming. When I have a migraine, my fibro flares. I don’t really know why, but it happens with me. It never fails. With my fibro, it makes it so difficult to get up and go. The fatigue is overwhelming, and it is so hard to do anything that is just the everyday stuff~get up, get dressed, take a shower, and mommy stuff~so I find it impossible to muster up any energy to exercise, even just to take a short walk. So I will just stay on the couch all day and set my son up next to me. Not moving around will make me so stiff and sore, and one by one, my joints will flare up. The psoriatic arthritis will flare. On a particular occasion that this happened, I also wouldn’t eat or drink enough, so the Sjogren’s symptoms flared~my eyes, mouth and nose got extra dry. I then got sores in my nose, and mouth. I had to see my cornea doctor because my tear duct was infected from getting too dry, and I had to have the tear duct plug surgically removed and the tear duct drained. I had to go to the ENT, and had to have my nose cauterized because it wouldn’t stop bleeding from being so dry. Then my psoriasis flared. The scalp psoriasis was the worst. I was even losing hair. My bowels were messed up and I had to see the GI doctor and have a colonoscopy scheduled…I had weathered my tornado, cyclone, hurricane and tsunami. Then there is the flood. There is so much to wait for after so much has happened at the same time to your body. It takes a while to recover. Imagine the clean up after these storms! It can take so long to feel better, and then to get back into normalcy again. The flood waters do go down, but it takes time.

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BLIZZARD, WINDSTORM, EXCESSIVE HEAT

One day my bones literally feel like they are so brittle that they are barely surviving a blizzard, and have frozen solid, that a windstorm could blow through and break every single one to pieces. Other days my body feels like it is in an oven on broil, and I am overheated. With many auto-immune diseases, we run fevers that are caused by unknown factors. Mine occur usually at night before bedtime or while I sleep. I sweat and get chills just as though I were sick, but it is all part of my auto-immune illness. How my body can burn up from such excessive heat like that; it’s like when they talk about heat warnings and heat alerts in the summer time! It can happen any time for me, even in the middle of winter. What I find so crazy about this is that my body is burning up from excessive heat, yet my bones feel like they are stuck in a blizzard with windchill factors below zero. The bones are so sore and achy that it reminds me of being out in the cold, and shivering, but I’m hot! If a windstorm knocked me over, I would crumble! Are you picturing the imagery here? I hope you are.

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EARTHQUAKE

An earthquake is such a great word to use when referring to my body. I have all these little fault lines throughout my different joints, well it was 6 in all but 2 were already replaced. My hips, knees and shoulders all have Avascular Necrosis. Because the blood supply doesn’t reach the joint, the joint dies, then collapses, and then the only thing left to do is replace the joint. When you look at the affected joint on an X-ray or MRI, there is a crack or line that resembles the letter “C” that goes through the middle of the joint. That is my fault line. After a while, the weight-bearing joints especially, can’t take the pressure on the joint anymore, and collapse and crumble. I had my left hip collapse in 2003 and my left shoulder collapse in 2009. It’s actually strange that the shoulder collapsed before the the other hip and the knees since it isn’t a weight-bearing joint. But basically, it’s a similar idea. I couldn’t carry anything around anymore on that joint, I couldn’t lift or push with that arm anymore. Then one morning, I woke up and I could move it no longer! It had collapsed. These joints move at the fault line and collapse, their own version of an earthquake. So now I have to wait for each one of the remaining 4 joints affected with AVN to have their own earthquake, probably at separate times, and most likely unexpectedly. I have small quakes, where the joint moves just so slightly at the fault line, like if I go from a sitting position to a standing position, vice-versa, or if I sit for a long time, or if I exercise and move around an excessive amount.  I have endured 2 large earthquakes, and will endure 4 more, unless the AVN spreads to other joints, then possibly more, and I will endure small quakes daily for many, many years. Ah, a wonderful picture~sarcasm!!!

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CLOUDS, BREEZE, CLEAR SKIES, SUNSHINE, RAINBOWS

We all have bad pain days, and we all have better pain days. I can’t say that with chronic pain we ever really have good pain days, but we can have good days.  I consider days that have less pain cloudy or partly cloudy, and sometimes during that day, the pain is even less, so I see that as a nice breeze that blows by. If the breeze blows hard enough, then there are clear skies. When there are clear skies, these are days that are definitely better days. I can do more stuff, like make dinner, and exercise, etc. Then when there is sunshine, well those are the even better days where I can do stuff that I like to do not just want I need to do, like dance and swim, and play more with my son. And then there are the rainbows! Yes, you don’t see rainbow days too much. If I had to call a day a “good day” for a chronic, I’d call it a rainbow day. These are the very rare days when I can catch a movie, go shopping, take a drive somewhere. These are harder now that the psoriatic arthritis has started to involve the spine~spondylitis. I can’t sit for a long time in the same position or stand for a long time. Exercise helps a bit, but if I am flaring, it’s hard to start exercise. I mostly look forward to partly cloudy, breezy, clear sky days. Sunshine and rainbows I dream about!

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