Dancing with My Disabilities!

Title: Dancing with My Disabilities! I had my shoulder and both hips replaced, and I am changing things up a bit on this blog! I began belly dancing in 2010! Yes, you read that correctly!! I am going to be blogging about my experience as a woman with several joint diseases and conditions who had her shoulder and both hips replaced who now belly dances, dances hip hop, performs, teaches dance to children of all ages and abilities, teaches belly dance fitness classes to adult women, teaches chair belly dance movement classes to people with mobility issues and disabilities, and takes a Pure Barre class as well! I still have pain, but I want to blog about how I have fun too! Please read Chronically Mommy (chronicallymommy.blogspot.com) for info on health/pain and being a mom to a 13-year-old son. I have avascular necrosis in my shoulders, hips, and knees, psoriatic arthritis, axial spondylitis, Sjogren's, fibromyalgia, hEDS, POTS, MCAS, vascular/ocular/hemiplegic migraines, pseudotumor cerebri, trigeminal neuralgia, occipital neuralgia, endometriosis, and chronic shingles. I found out that I have autoimmune arthritis in my cervical spine and a bulging disk in my lumbar spine. Fourteen years ago, my spine orthopedic surgeon told me I had a small amount of inflammatory arthritis in my SI joint. The question was if the spinal involvement was due to Psoriatic Spondylitis, which is a more severe form of Psoriatic Arthritis or is it a new diagnosis of Ankylosing Spondylitis? Now, they have an updated term, Axial Spondylitis, which fits my symptoms and diagnostic proof. Whatever the diagnosis, the treatment will remain the same. I had my left hip replaced in 2003; my right shoulder replaced in March of 2010. I gave my right arm to be ambidextrous! LOL! Lastly, I had my right hip replaced on May 10th, 2012, and I began belly dancing two years prior to my right hip replacement surgery. Yes that's correct! I began belly dancing in 2010, just after my shoulder replacement, before my son was born. I performed for the first time in 2012, five days prior to my right hip replacement surgery. Pain is still another part of my life. It is just a question of when, where, and how much, but I would like to use this blog to write about my experience as a woman with several joint diseases and conditions who had both hips and a shoulder replaced and now spends her free time dancing, teaching, and performing! I began dancing with a troupe in February of 2014, Seshambeh Dance Company. I now take a Pure Barre class on Monday mornings, teach ballet, tap, and creative movement on Monday evenings to children of all ages and abilities, take a hip hop class with all adult women on Tuesdays and Wednesdays, teach a belly dance fitness class on Thursdays to all adult women, and teach a chair belly dance movement class to people with mobility issues and disabilities as often as I possibly can. Join me in my journey! At times, I take 16 to 20 pills a day. I give myself an injection each week on Fridays for my autoimmune/autoinflammatory arthritis diseases. Just when one thing is doing better, something else goes downhill! My attitude, however, is always going uphill! I am 49 years old, have been married for 24 years, and my husband and I adopted Mick in Dec. of 2010! I have a lot on my plate right now, but I take it one moment at a time. I believe that God will never give me more than I can handle. However, I do need to learn to ask for help sometimes instead of always doing it by myself!

Blog Title: Dancing with My Disablities!

Formerly Now Read My HIPS, and before that, I Already Gave My Right Arm to Be Ambidextrous.
Help, I need somebody,
Help, not just anybody,
Help, you know I need someone, help.

When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these days are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.

And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like I've never done before.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.

When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these daya are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me, help me, help me, oh.

Dancing with My Disabilities

Dancing with My Disabilities
Asmara "Beautiful Butterfly"

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Thursday, May 26, 2011

What the heck are biologics?

I had been asked by several people in a Facebook group and also someone had asked me twice on my Blog Talk Radio Show, I Already Gave My Right Arm To Be Ambidextrous! 
if I would post information on the biologics for inflammatory arthritis/psoriasis. I did some research, had my radio show for part 1 about the biologics, and now am compiling everything so my followers can read the information that I gathered. 




I found my information online from Web MD, the National Psoriasis Foundation, Wikipedia, From Your Doctor.Com, MedImmune, the FDA, SkinCarePhysicians.Com, Surgical Biologics, Rheumatology, the Psoriasis Association.

Biologics are among the newer treatments for psoriasis that have revolutionized treatment of moderate to severe psoriasis and psoriatic arthritis and have become an important treatment option for these people that have not responded to other therapies. Unlike other therapies for these conditions, these biologics are considered to be a potentially safer option for long-term therapy. Some of these biologics have been shown to slow or stop the joint damage of psoriatic arthritis.  In the last decade, the Food and Drug Administration (FDA) has approved several biologics for the treatment of plaque psoriasis and psoriatic arthritis. These are a few of the biologics approved for psoriasis: Amevive (alefacept), Enbrel (etanercept), Humira (adalimumab), Remicade (infliximab), and Stelara (ustekinumab). Before the biologics, people with psoriatic arthritis could take medication to alleviate the symptoms, but treatment could not prevent joint damage, which can cause lifelong disability. The biologics also have proven effective for some people when other therapies have not worked. Biologic drugs, or "biologics," are a relatively new class of treatment for psoriasis and psoriatic arthritis treatments. They are given by injection or intravenous (IV) infusion. A biologic is a protein-based drug derived from living cells cultured in a laboratory. Biologics are not new medications. While biologics have been used to treat disease for more than 100 years, the changing of modern day molecular biologic techniques has accelerated their use in modern day medicine tremendously in the last decade. Vaccines and insulin are considered biologics because they are derived from living sources. It is only recently however that biologics that are specifically targeted toward psoriasis and arthritis have begun to emerge as potentially promising new treatment options. Different from the traditional systemic drugs that impact the entire immune system, biologics target specific parts of the immune system. The biologics used to treat psoriatic diseases act by blocking the action of a specific type of immune cell called a T cell, or by blocking proteins in the immune system, such as tumor necrosis factor-alpha (TNF-alpha) or interleukins 12 and 23. These cells and proteins all play a major role in developing psoriasis and psoriatic arthritis. The biologics are taken by injection or by IV infusion. Amevive is administered by intramuscular injection in a medical office. Enbrel, Humira and Simponi are injected in the legs, abdomen or arms, typically by the individual with psoriasis or a family member. Stelara is administered as a subcutaneous injection by a health care provider. Remicade is given through IV infusion in a doctor’s office or infusion center. Biologics are prescribed for individuals with moderate to severe cases of plaque psoriasis and psoriatic arthritis. They are a viable option for those who have not responded to or have experienced harmful side effects from other treatments. The TNF blockers have been shown to reduce the progression of joint damage in psoriatic arthritis. 
 
Immune system cells, T cells and B cells, monitor the body for bacteria, viruses and other infections. When these immune cells come in contact with a foreign substance, they release chemical signals, such as tumor necrosis factor (TNF) and interleukins, that trigger inflammation. In people with psoriasis, the immune system mistakenly activates T cells that travel to the skin and produce excessive amounts of inflammation, resulting in rapid skin cell growth and psoriatic lesions. Biologics inhibit the immune system, reducing inflammation and inhibiting the excessive skin cell growth. Different biologic medications target different portions of the immune system. Some biologics reduce T cell activity, while others reduce the production of tumor necrosis factor (TNF) or interleukins. A doctor may recommend the use of a biologic for people whose psoriasis is moderate to severe, cannot be controlled effectively with other psoriasis treatments, or cannot tolerate other psoriasis medications because of side effects. Talking with a dermatologist who has experience with the biologics is the best way to decide if a biologic is an appropriate treatment option. Before speaking with a dermatologist, it helps to know a bit about the biologics. Biologic agents may be used alone, but are often given with other DMARDs, disease-modifying antirheumatic drugs, (e.g., methotrexate, leflunomide, hydroxychloroquine, sulfasalazine), to increase the benefit and decrease side effects. When patients start biologic agents, they usually also stay on their current dose of nonsteroidal anti-inflammatory (NSAID) and/or corticosteroid (i.e., prednisone) medicines. Some of the TNF inhibitors have been approved for use in juvenile arthritis, Crohn’s colitis, psoriatic arthritis, ankylosing spondylitis and psoriasis.

Biologics are different from other medications for psoriasis and psoriatic arthritis because they are designed to block both diseases early in their development - in the immune system.

Psoriasis and psoriatic arthritis begin in the immune system when certain immune system cells are triggered and become overactive. These overactive cells set off a series of events in the body, eventually causing psoriasis to develop on the skin and arthritis symptoms to develop in the joints. Biologics work for psoriasis and psoriatic arthritis by blocking the action of certain immune cells that play a role in the diseases. In some cases biologics reduce the number of these cells in the skin and blood . In other cases they block the activation of the immune cells or block the psoriasis causing chemicals released by them.



Almost all treatments that work for psoriasis and psoriatic arthritis impact or target the immune system in some way. This is true for Ultra Violet treatment and systemic medications such as methotrexate and cyclosporin. The difference is that their impact on the immune system and body is broad, including the risk of potentially serious side effects on other organs. Biologics are more targeted and should spare the body these broad side effects and they have the potential to be a safer option. Because of the effect these treatments have on the immune system, patients on systemic and biologic treatments may require an annual flu shot.


Biologics are a class of drugs that have been used since 1998 and have been studied for almost 10 years. Overall, they have been given to more than 600,000 people worldwide. A “biologic” drug copies the effects of substances naturally made by your body's immune system. Biologic agents are genetically engineered drugs – meaning that human genes that normally help with the production of these natural human immune proteins (i.e., an antibody to TNF) are used in non-human cell cultures to make large amounts of a biologic drug. These drugs are given to decrease inflammation by interfering with biologic substances that cause or worsen inflammation. These new biologic agents can specifically affect some of the abnormalities of the immune system that lead to the joint inflammation and other abnormalities seen in rheumatoid arthritis and so help treat its symptoms. In the last decade, there have been great advances in treating rheumatoid arthritis, especially for patients whose arthritis does not respond to traditional DMARDs, with the most important advance being the development of the biologics. There are a number of biologics approved to treat rheumatoid arthritis. Biologics are genetically engineered proteins derived from human genes so they are designed to inhibit specific components of the immune system that play leading roles in fueling inflammation, which is a key feature of rheumatoid arthritis. Biologics are used to treat moderate to severe rheumatoid arthritis that has not responded adequately to other treatments. They differ significantly from traditional drugs used to treat rheumatoid arthritis in that they target specific components of the immune system instead of broadly affecting many areas of the immune system. Other biologics are being studied to treat rheumatoid arthritis as well as other conditions. Biologics may be used alone but are commonly given along with other rheumatoid arthritis medications. Biologics have been shown to help slow progression of rheumatoid arthritis when all other treatments have failed to do so. Aggressive rheumatoid arthritis treatment is known to help prevent long-term disability from RA. Biologic agents have been approved by the FDA to treat moderate to severe rheumatoid arthritis that has not responded to an adequate trial of one or more of the traditional DMARDs. Because of their expense and side effects, most people with mild to moderate rheumatoid arthritis are treated with methotrexate before a biologic agent is used unless they are unable to take methotrexate because of side effects or other conditions. Currently available biologic agents act as inhibitors of the cytokines IL-1 or TNF. Cytokines are messenger molecules that the body's cells make to act to excite other immune system cells. Interleukin-1 (IL-1) and tumor necrosis factor (TNF) are made in large amounts in rheumatoid arthritis and other forms of inflammation. In these diseases, TNF or IL-1 act to increase inflammation, like gasoline on a fire. However, in rheumatoid arthritis TNF or IL-1 (the gasoline) acts by exciting the inflamed joint (the fire). Hence, these cytokines actually worsen inflammation and joint damage. Biologic agents were made to specifically attach to TNF or IL-1 and inhibit or inactivate them.



For rheumatoid arthritis, the starting doses have been decided due to large clinical trials. Biologic agents must be given by an injection under the skin--etanercept (brand name Enbrel), adalimumab (brand name Humira) and anakinra (brand name Kineret)--or by intravenous (IV) infusion--infliximab (Remicade). These medications must be stored in a refrigerator and warmed to room temperature before use. Patient education information and videos are available for the self injectable medicines. A nurse or doctor can teach you about the medicine and how to give the injections. It is helpful to bring a spouse or friend with you to learn how to do the injections. You can inject the medicine in the front of your thighs or abdomen. Injection sites should be rotated so that the same site is not used repeatedly. Most patients who are afraid to inject themselves are usually able to give these injections repeatedly with little or no discomfort. Remicade infusions are either done through an IV line in the doctor’s office or in specialized infusion centers. These treatments usually take 2-3 hours, during which time the patient can rest, read, watch TV or do office work without discomfort.


Biologic agents usually work quickly to relieve the symptoms and swelling associated with rheumatoid arthritis. Studies show that most patients will improve within 4-6 weeks of treatment, but most patients receiving Enbrel, Humira, or Remicade will notice marked improvement after the first or second injection/infusion.

Key features of the biologic drugs:  taken by injection ot infusion ( either in an infusion center or at home depending on the specific medication);  treatment schedule and frequency vary; will improve psoriasis and psoriatic arthritis for some people but not all;  short term side effects are generally minor although an allergic reaction to the injection can occur; long term safety is still being evaluated;  they are expensive; they must be taken continuously to maintain improvement.


The most common side effect seen with biologics is pain and rash at the injection site in less than 30% of patients. As with any drugs that suppress the immune system, biologic therapy poses an increased risk of infections and other diseases. Patients taking biologics should tell their doctor immediately if they develop a persistent fever or unexplained symptoms. Vaccinations that prevent infections should be considered prior to administration of biologics. Patients should not receive live vaccines while taking biologic medications. Biologics may also cause some chronic diseases that are dormant (such as tuberculosis) to flare, and they are not recommended for people with conditions such as multiple sclerosis and congestive heart failure. All patients should be skin tested for tuberculosis before even starting biologics. Since biologic therapy is in its early stages of use, some of the long-term effects of using these medications aren't known, and your doctor should regularly monitor your health while using them. Biologics are also more expensive than traditional treatments. However, the evidence suggests that they work well and pose fewer risks than other systemic therapies. One disadvantage to current biologic medications is that they must be given either by injection or by intravenous infusion. However, researchers are currently working on developing a biologic that can be taken orally.


Although animal studies of biologics have shown no effect on fertility or effects on the fetus, these studies cannot always predict the effects in humans. Pregnant women should receive these drugs only if they are clearly needed because the effects on the developing child are still unknown. Biologics are commonly discontinued before surgery until wounds have healed and the risk of infection has passed. As a general rule, different biologic therapies should not be taken at the same time. With any treatment, it is important to meet with your doctor regularly to monitor your progress and to evaluate side effects. Your doctor may periodically order blood tests or other tests to determine the effectiveness of your treatment and detect side effects that cannot necessarily be seen on the outside. Biologic drugs have affected the treatment of rheumatoid arthritis tremendously. As mentioned above, newer biologics are being developed that either provide alternative methods or frequency of administration or different targets of action. The most common side effects seen with the injectable medicines include skin reactions, which are called “injection site reactions.” Skin reactions to injection occur in less than 30% of patients, and these patients usually complain of localized rash, burning, or itching at the site of injection. With Enbrel and Humira these skin reactions may last up to a week. Kineret injection skin reactions may last for 10-14 days before fading away without scar. The most significant side effect of these medications is an increase the risk of all types of infections, including tuberculosis (TB). Before starting an anti-TNF medication a TB skin test is usually done. Treatment with these agents should be stopped while you have an active infection and are taking an antibiotic or if you have a high fever. Remicade can cause allergic reactions. There are also rare neurologic complications from the anti-TNF medications, and people with multiple sclerosis should not use them. People with significant congestive heart failure should not take the anti-TNF agents.

Do not take biologics if: your immune system is significantly compromised; you have an active infection. Screening for tuberculosis (TB) or other infectious diseases is required before starting treatment with Enbrel, Humira, Remicade, Simponi and Stelara.



People considering taking a biologic drug should talk with their doctor about the short- and long-term side effects and risks. It is important to weigh the risks verses the benefits of using the drugs. Biologics can increase the risk of infection. Individuals who develop any sign of an infection such as a fever, cough or flu-like symptoms or have any cuts or open sores should contact their doctor right away. The impact of biologics on a developing fetuses or nursing infants is not known. Biologics should only be prescribed to pregnant or nursing women if there is a clear medical need.



Common side effects for biologics include: respiratory infections; flu-like symptoms; injection site reactions. These side effects are generally mild and in most cases do not cause individuals to stop taking the medication.



Rare side effects for biologics include: serious nervous system disorders, such as multiple sclerosis, seizures, or inflammation of the nerves of the eyes have: blood disorders; certain types of cancer. Call your doctor if you are experiencing any side effects with biologic drugs.



All of the biologics currently on the market can be used with other treatments such as phototherapy or topicals. Data suggests that phototherapy in combination with Amevive may improve the outcome. Using phototherapy along with Remicade may increase your risk of skin cancer. Enbrel, Humira, and Remicade are safe and effective when taken with methotrexate. Talk to your doctor about whether using any other treatments with a biologic is right for you.

Most medications are created by combining chemicals. In contrast biologics are made from living human or animal proteins. The medications made from these proteins are specifically designed to act in certain ways in the body to correct something going wrong that leads to disease. Currently, all biologics used for the treatment of psoriasis must be injected or given by IV. They currently cannot be taken by mouth because the protein molecules are too large to be absorbed by the intestine and are too fragile for  the stomach acid.  


Biologics work by targeting the underlying cause of psoriasis — excessive skin cell growth because of an overactive immune system. Although they can often provide long periods of clear skin, they are not a cure for psoriasis and ongoing treatment is necessary.

Biologic agents represent a new kind of treatment for patients with inflammatory arthritis, like rheumatoid arthritis. They are expensive, generally effective, well tolerated and quite safe in most patients, but do increase the risk of infections. Their safety can be enhanced by proper screening procedures (TB skin test) and periodic monitoring of blood tests by your doctor. Patients should request and read educational materials from the doctor who prescribes these medicines. Watching instructional videos and having another person give you these injections can minimize the fear of injection yourself.





Amevive (alefacept) works by blocking the activation of a type of white blood cell called a T cell, which results in a reduction in skin inflammation. T cells normally help the body rid itself of foreign invaders such as viruses, fungi and bacteria. However, in psoriasis the T cell mistakenly attacks the skin; this sets off a chain or "cascade" of events that causes psoriasis lesions to form and become inflamed. Amevive blocks the action of T cells to reduce inflammation and inhibit skin cell overgrowth. This leads to a clearing of lesions and other psoriasis symptoms. The medication is given by intramuscular (IM) injection, usually in the doctor's office. A typical course with Amevive is one intramuscular injection per week for twelve weeks, followed by additional 12-week treatment cycles if necessary. Treatment cycles must be separated by 12 week periods off treatment. Blood tests are performed regularly to monitor T-cell counts. Each doctor may tailor the use of Amevive according to how well someone responds to treatment and tolerates the medication.









Stelara (ustekinumab) works by selectively targeting the cytokines interleukin-12 (IL12) and interleukin 23 (IL23). Interleukins-12/23 are also cytokines which are thought to promote the inflammation associated with psoriasis. Stelara was FDA approved for the treatment of psoriasis in 2009. It works by blocking interleukin-12 and interleukin-23, immune-system proteins linked to inflammation and the rapid skin cell growth underlying psoriasis. Stelara is usually given by injection twice in the first month, and then every 12 weeks. This results in approximately 5 treatments per year. The relatively low number of injections and long duration between treatments are considered to be some of the benefits of Stelara. Although other biologic medications may be self-injected at home, Stelara should be administered by a medical professional. Patients should be screened for latent tuberculosis (TB) before taking Stelara and blood tests may be performed to monitor the immune system. Each doctor may tailor the use of Stelara according to how well someone responds to treatment and tolerates the medication.






















































Actemra, given by monthly hour-long infusions, is the first IL-6 inhibitor for rheumatoid arthritis. It can be used alone or in combination with disease-modifying drugs such as methotrexate. IL-6, or interleukin-6, is a chemical messenger of the immune system. The FDA has approved Actemra for moderate to severe rheumatoid arthritis in patients who have not responded to one or more TNF inhibitors. TNF inhibitors include Cimzia, Enbrel, Humira, Remicade, and Simponi.The most common adverse effects include upper respiratory tract infection, inflammation of the nose or throat, headache, high blood pressure, and elevated liver enzyme level. 

Cimzia works by blocking the action of a substance in your body called tumor necrosis factor (TNF). This reduces inflammation and the pain and stiffness from rheumatoid arthritis and can improve fatigue within a couple of weeks. Cimzia is an injection. Through the use of prefilled syringes, you can give it to yourself once you are taught to do so by a doctor or nurse. After the initial doses, Cimzia can be taken every 2 to 4 weeks, depending on the dose your doctor feels is right for you. In addition to pain at the injection site, the most common side effects seen with Cimzia are upper respiratory infections, such as a cold, rash, and urinary tract infections.


Enbrel reduces joint inflammation and damage from rheumatoid arthritis by blocking a chemical activator of inflammation called tumor necrosis factor (TNF). Enbrel is also an injection. Enbrel is given by self-injection under the skin once or twice a week. Patients can learn to give their own injections or receive them from a family member or caregiver who has had proper instruction. Preloaded syringes are available as self-injectable “click-pens.”
In addition to pain at the injection site, Enbrel's most common side effects are infection, including upper respiratory infections like a cold, headache, and runny nose. Enbrel is FDA approved for the treatment of psorias, psoriatic arthritis and rheumatoid arthritis. It works by inhibiting the activity of TNF (tumor necrosis factor), the chemical “messenger” that triggers inflammation. Enbrel is given as a subcutaneous injection (under the skin) similar to the insulin used by people with diabetes. People can learn to administer subcutaneous injections themselves at home. A typical treatment course with Enbrel is two subcutaneous injections per week for three months. A weekly maintenance dose may be recommended. Symptoms often return within a month or longer after stopping the medication.

Enbrel may be used alone or in combination with other psoriasis medications, including methothrexate. Blood tests may be performed to monitor the immune system during therapy with Enbrel. Each doctor may tailor the use of Enbrel according to how well someone responds to treatment and tolerates the medication.


Humira reduces joint inflammation and damage from rheumatoid arthritis by blocking a chemical activator of inflammation called tumor necrosis factor (TNF). Humira is an injection. It is given by self-injection under the skin once every two weeks. Patients can learn to give their own injections or receive them from a family member or caregiver who has had proper instruction. Preloaded syringes are available as self-injectable “click-pens.” In addition to pain at the injection site, the most common side effects with Humira are upper respiratory infection, headache, and rash. Humira has been prescribed for rheumatoid and psoriatic arthritis and was FDA-approved for the treatment of psoriasis in 2008. Like Enbrel, Humira helps clear psoriasis by interrupting the activity of TNF (tumor necrosis factor).
Humira is given as a subcutaneous injection (under the skin) similar to the insulin used by people with diabetes. A typical treatment course with Humira is one subcutaneous injection every two weeks. These injections are given on an ongoing basis to relieve symptoms and stave off future outbreaks. Humira may be used alone or in combination with methotrexate or phototherapy. Patients should be screened for latent tuberculosis (TB) before taking Humira. Blood tests may be performed to monitor the immune system. Each doctor may tailor the use of Humira according to how well someone responds to treatment and tolerates the medication.


Kineret is a protein that reduces joint inflammation by blocking the action of the chemical messenger interleukin-1. The drug is administered as one injection daily (can be self-injected or given by another individual). In addition to pain at the injection site, the most common effects with Kineret are upper respiratory infection, headache, and nausea.


Orencia is used to treat moderate to severe rheumatoid arthritis. Orencia is a protein that blocks signals that are needed to activate T-cells of the immune system. Activated T-cells play an important role in the development of rheumatoid arthritis. Orencia is approved to reduce the symptoms and stop the progression of RA in patients not helped by methotrexate or other biologics. It can be taken alone or with other medications except biologics. Orencia is given by intravenous infusion monthly. Side effects include serious allergic infusion reactions. Symptoms of infusion reactions include flu-like illness, fever, chills, nausea, and headache. Caution should be used in prescribing Orencia for patients with chronic obstructive pulmonary disease (COPD). Orencia's most common side effects are headache, runny nose, and dizziness.


Like Enbrel and Humira, Remicade reduces inflammation and damage from rheumatoid arthritis by blocking a chemical activator of inflammation, tumor necrosis factor (TNF).
Remicade is given by intravenous infusion in the doctor's office, an infusion center, or hospital. Each infusion takes about two hours. The intravenous treatments are given three times during the first six weeks of therapy, then every eight weeks thereafter. Remicade is often given with methotrexate for treating rheumatoid arthritis.
Because it is administered intravenously, Remicade has the potential to cause an allergic infusion reaction, and patients are therefore monitored during infusions.
The most common side effects of Remicade are upper respiratory infection, headache, and nausea. First used as a treatment for psoriatic and rheumatoid arthritis, Remicade is also FDA-approved for the treatment of moderate to severe psoriasis. Like other biologics used for the treatment of psoriasis, Remicade works by blocking the action of TNF. Remicade is administered via IV (intravenous) infusion in a doctor's office or infusion center. It is commonly administered three times in six weeks, and then once every eight weeks. Remicade may be used alone or in combination with methotrexate. Patients should be screened for latent tuberculosis (TB) before taking Remicade and regular blood tests may be performed. Each doctor may tailor the use of Remicade according to how well someone responds to treatment and tolerates the medication.


Rituxan is approved for patients with moderate-to-severe rheumatoid arthritis who have not improved with TNF-blockers, such as Enbrel, Humira, or Remicade. Rituxan is an antibody protein that works by targeting and reducing the number of specialized white blood cells, called B cells, in the blood. Rituxan is given as two intravenous infusions -- separated two weeks apart -- in combination with methotrexate. Repeat courses of Rituxan are considered after four to eight months. Because it is administered intravenously, Rituxan has the potential to cause an allergic infusion reaction, and patients are therefore monitored during infusions. Symptoms of infusion reactions include flu-like illness, fever, chills, nausea, and headache. Rituxan's most common side effects are high blood pressure, nausea, and upper respiratory infection.


Like Remicade, Enbrel, and Humira, Simponi blocks the effects of TNF. It blocks the effects of a chemical that triggers inflammation. Simponi should be used in combination with oral methotrexate, and it’s intended for adults with moderate to severe symptoms.  Simponi is taken once a month by injection. After a health care professional shows you how to do it, you can give yourself the injection at home with either a prefilled syringe or an autoinjector.
The most common side effects include upper respiratory infections, runny nose, and abnormal liver tests.

Raptiva (efalizumab), a biologic that blocks the activation of T-cells, was approved in 2003 by the FDA. It was voluntarily taken off the market in 2009 due to safety concerns. For more information about this matter, visit the Food and Drug Administration's website.
Enbrel (etanercept), Humira (adalimumab), Remicade (infliximab) and Simponi (golimumab) are drugs that block TNF-alpha. TNF-alpha is an immune system mediator called a cytokine that is a key mediator of inflammation. In psoriasis and psoriatic arthritis, there is excess production of TNF-alpha in the skin or joints that leads to the rapid growth of skin cells and/or damage to joint tissue. Blocking the TNF-alpha helps to stop the inflammatory cycle of psoriatic diseases.

Biologics prescribed for the treatment are not always covered by health insurance. It is important to check with your health insurance carrier to see if and how biologics are covered. Some insurance companies offer partial coverage, require prior authorization, or work only with certain pharmacies through mail-order programs. Also, some biologics manufacturers provide information on how to work with insurance companies and offer reduced-cost medication for qualifying patients.
 
The biologic medications have been investigated by the National Institute for Health and Clinical Evidence (NICE) who have issued guidelines on when they can be prescribed. NICE have issued guidelines for five of the biologics used to treat psoriasis, Etanercept (Enbrel), Efalizumab (Raptiva), Infliximab (Remicade) and Adalimumab (Humira) and Ustekinumab (Stelara). However, since issuing the guidance, Raptiva has had its marketing authorisation suspended and so will not be prescribed.

NICE recommends that Enbrel, Humira and Stelara be prescribed for people with severe psoriasis who have not responded to other systemic treatments such as phototherapy, Methotrexate, Cyclosporin and Acitretin, or if these treatments cause a reaction--which means the person should not take them--or if the person has another condition or medication--which means that they should not take the other systemic treatments. If the psoriasis doesn't show a measurable change for the better after 12 weeks of therapy (in the case of Enbrel and Humira) NICE recommends that the treatment be stopped. If the psoriasis doesn't show any change (in the case of Stelara) after 16 weeks of starting treatment, NICE recommends that the treatment be stopped. Remicade can be offered for the treatment of very severe plaque psoriasis if the psoriasis has not responded to other systemic treatments such as phototherapy, Methotrexate or Cyclosporin. If the psoriasis has not shown any measurable change after 10 weeks then treatment should be stopped.

NICE have issued guidelines for three of the biologics used to treat severe Psoriatic Arthritis--Enbrel, Remicade and Humira. NICE recommends that Enbrel, Remicade and Humira be prescribed for people with severe psoriatic arthritis when the person has three or more tender joints and three or more swollen joints and at least two other DMARDs given on their own, or together, have not worked. If the psoriatic arthritis has not shown any measured response at 12 weeks, NICE recommends that the treatment be stopped.

If you have any questions, please tune into my Blog Talk Radio Show. Call in or sign in to the chat room with your questions live! Part 2 is live May 26th at 11 P.M. ET! Call in # is (714) 459-3943, press 1 if you want to talk on air!  I would love to hear from you!!!

MediGuard.Org  has info on a safety alert regarding biologics. Please read.

Tuesday, April 19, 2011

I Am A Superhero!

I am a Superhero!

April 18th, 2011 

This was a winning entry in How to Cope with Pain BlogWrite Something to Share” contest and is written by Dana, who writes at I Already Gave My Right Arm To Be Ambidextrous!

After coping with pain for many years, it becomes a way of life.  I’m truly not being negative.  I’m just stating a fact.  If you live with chronic pain, you understand what I’m talking about completely.  You learn to give yourself more time, to plan ahead, to always expect things could change at the last minute, to never put too much weight on your plans, and above all to give yourself a lot of slack.  You have to learn to not be too hard on yourself.  Ultimately, a person with chronic pain wants more than anything to be normal or to appear as normal as possible.  I know that I will never be normal again, and I accept it; but I can still dream…right?
I cope with my pain better than a lot of others I know, and I cope much better than I did when the pain first began.  There is a learning curve.  One of the most important things to know about coping with chronic pain that I have learned is that I can’t blame myself for what seems to follow when the pain days are bad, or worse than usual.  There is no reason to put more stress upon myself by putting blame upon me for something that I didn’t cause.  Now there are times when I overdo it, and I definitely can point the finger at myself for the increased pain that will cause.  But overall, with chronic pain, it is going to be there every day, and it will increase and decrease from day to day at no fault of my own.
I am the type of person who has always been extremely hard on me in order to challenge myself and accomplish goals in my life. Yes, I think that is important most of the time, but not when it comes to chronic pain.  I have learned that chronic pain is almost like a characteristic that makes me who I am, that can’t really be changed because it is a part of me.  For instance, I am short—5 feet   1 ¾ inches tall. I cannot make myself taller than that.  I can wear heels (although I don’t really suggest I do that with the pain that I experience in my feet, ankles, knees , hips and lower back),  but when I take my pumps off, I will always be 5 feet  1 ¾ inches tall.  If I wanted to be shorter, well first of all, I would have to ask “why?” Secondly, unless I am sitting down in a chair, I will always be the same height without heels.  So, with pain, I will always have it. I can better cope with it by taking pain medications, practicing relaxation techniques, exercising, resting throughout the day, proper stretching, proper shoes, etc.  But the pain will always be there, and it will never completely disappear.  I will have bad pain days, and I will have better pain days, but I will never have pain free days.  I accept it. It is a part of my life.
I can’t really say you get used to it, but I have gotten stronger as a person because of the pain.  Not necessarily physically, but mentally, psychologically, emotionally, and spiritually I am a superhero. That is how strong I am!  Because of the ability to cope so well with day to day chronic pain, and not allowing it to run my life, I am able to use the coping skills that I developed to help me cope in other ways in my life.  It is amazing how much more life I have now that I have transferred my pain coping skills into the rest of my life…Ok, so you want examples?  Well, I can give you one HUGE example that has been the biggest change in my life, which hasn’t had a HUGE effect on my pain though because I have such great coping skills.
This past December, my husband and I adopted a baby boy.  He is our first child. We have been married for nearly 11 years now, have tried the adoption route for 6 years, and finally we were blessed with a beautiful, healthy baby boy.  We had to fly to another state to pick him up, and we got there 6 days before he was born (he was overdue).  We were able to pick him up and take him with us from the hospital when he was just 4 days old.  So we were staying in a hotel.  It was a nice hotel for extended stays.  Luckily, from the very first night with us, he slept through the night 5 to 6 hours at a time (now 8 hours at a time at 2 ½ months old).  At this point, my body was faced with probably one of the biggest stresses possible—feedings every 2 hours, diaper changes, carrying the baby constantly, bouncing the baby, holding the bottle for 30 minutes at a time in the same position, burping the baby, giving the baby a bath, putting on a diaper, etc., etc., etc.  All of these things I was able to do, I just have to do them in a different way than other mommies do them.  It also may take me a little bit longer.  I have learned to love the slings to carry him close to me. I have also learned to love pillows to lay him on when I feed him and prop him up, and to prop my own arms up.  I have learned easier ways to make up his bottles and to change his diapers and even to give him a bath.  I may do things a little differently, but I get everything done and have a very happy and healthy baby boy who is thriving!
I have learned that just as I must be patient with my own body because of the pain, I must be just as patient with my baby boy who will cry a lot. I may not always know what he needs, or it may take a while to figure it out, so I must use that patience that I know so well with my own body.  I have learned to take care of the tasks that have to get done and put the others off until I am able to do them.  Those tasks will keep.  Anything that the baby needs is priority—making bottles, changing diapers, soothing his tears, playing with him, bathing him, etc.  Dusting, vacuuming, and cleaning the kitchen and bath are among the tasks that are at the very bottom of the list.  Taking care of me is very important though too. I can’t put me off because if I flare, who will be there for the baby?  That is constantly running through my mind.  I do my best to make sure I get the rest I need, to eat healthy, to take my meds, to exercise when I can, etc.  I have found that by taking care of myself, by making sure that the baby is taken care of, and by putting off the less important tasks, and letting some of my chores keep until I can get to them has kept me from flaring these past 2 ½ months. I have not flared once since we brought the baby to the hotel out of town.
I will tell you that we had some major unexpected events occur during the adoption process.  The birth family found out that I had a joint disease and wanted to back out of the adoption agreement with us.  I was devastated! For the first time in a long time, I allowed my chronic pain conditions to define me!  That was so unlike me!  I stood back, took a good hard look at my life and why we were adopting, and realized that this was what we had always wanted—to raise a family.  It was a promise we made to each other before God in our vows.  We were going to make this happen!  My rheumatologist spoke to the birth family about how I was coping so well and was very capable of raising a child.  He had no doubts.  The family decided to go with their previous decision and place the baby with us!  We were excited and nervous all at once, but we felt we were ready at this point in our lives.
Then while out of town, staying in the hotel, we had some problems with the paperwork and fingerprinting, so we had to stay much longer than anticipated.  We ended up being out of town from December 9th through the first week of January.  We had the baby in a hotel room with us from the 18th of December until we left in January!  We had to do our fingerprints in that state, and I had to redo mine 3 times while I was there because they have a hard time rolling my fingers with the ink because of the arthritis in them.  So that was more stress.  I was unable to exercise at the gym there, so I was unable to release the stress that way, which really helps me to cope better.  Our luggage got lost at the airport!  The window in our hotel room wouldn’t close, and it was winter—snow and freezing temperatures!  We asked for another room, and the desk worker said that was the last available room we were in. She said to use all of our weight and push down on the window.  Well, actually, that did work!
So with all the stress of a new baby, I’m making it because of my fabulous coping skills with having chronic pain.  I also have to say that I have never been happier.  It was worth the wait.  I love him with all my heart!  In a way, I can thank my chronic pain for helping me to be a better mom.  If it weren’t for my chronic pain, my coping skills wouldn’t be this perfected.  I wouldn’t be able to handle the daily stresses of motherhood and the unexpected stresses that life throws at you as well.  So, thank you, chronic pain!

Sunday, April 3, 2011

Help Me If You Can...I Do Appreciate You Being Round...Even If I Don't Always Act Like It!

For this blog carnival, it's our take on help. How do we  help ourselves, get help from others, or even recognize our need of a little helping hand? How do we feel about asking for help or getting some when we haven’t asked for any? Let's explore this topic. smileyIcon

Oh wow! Where do I begin with this topic? Help, I need somebody! This is so difficult for me. I am so independent. I am such an advocate for people with chronic pain and chronic illness that I lose sight of what I really need~HELP! 

The difficult part of this topic is that no matter how independent, self-assured, and secure we are, there is always a time in our lives when we feel down, fall down, have a door close in our face, and go through a life-changing event. For me, pain is constant and daily, so I have learned to live with it as a part of my life which is good and bad. It's good for me because I have learned to deal with life as a person with chronic pain, meaning that I know how to make plans and choices that fit my lifestyle. It's bad because those plans and choices will likely change in an instant. When those plans and choices have to change due to extreme pain days, weeks or months, it would be smart to ask for help. However, the stubborn side of me will almost never ask for help. It's not that I don't want it or need it. It's not that I think people like family and friends should be able to read my mind and automatically know when my pain is so bad that I have to start canceling things. I always feel like it makes me weak. Silly isn't it. The reason I think this is a silly thing is because here I am living with several pain conditions daily, which makes any person that does this strong, but I can't find the courage inside me to ask for even a little help.
This week, I was so stressed out. I went off my fibromyalgia medication. The pain was severe. I was so tired and fatigued but couldn't sleep. We have a 3 1/2 month old. Need I say more? Actually, I will give you a little more info. My hubby, baby and myself all live 9 1/2 hours away from any family member. We mostly hang out here with the hubby's friends from work, which have in turn become my friends, and I have made a few friends of my own as well. I feel bad asking people from his work for help because I don't know them that well. I also hate asking friends for help because I would rather help them. So that leaves the hubby. I guess I got so stressed out from not asking anyone, including my own spouse, for help that I lost it. I told my hubby that I couldn't do any of it. It was too hard. I was behind with getting bottles made, doing laundry, running the dishwasher, going to the store, sending birthday cards out, making meals, and putting stuff away. I couldn't or wouldn't even admit that it's been months since I cleaned, dusted or vacuumed the house! I was wearing the same clothes for the third day in a row and hadn't showered in I don't know when. I needed help!

He literally said to me that he couldn't believe how helpless I had become! I was furious! I was not helpless, and yet I was because I wasn't asking for help! I don't know if I ever looked at the word that way before, but at that moment I did. I was helpless. I was not taking any one's help or asking for any one's help. I was helpless! He told me that he wasn't a mind-reader. He couldn't tell what I needed help with unless I asked for it. Ah! That is the secret behind asking for help, you see. Help doesn't just come to you. You must get the courage up and ask for it. He told me that he just assumed that I had everything under control and didn't need any help. He said that on the outside looking in, I appear to have it all together. Hmmm...interesting, to say the least. It's kind of like our pain conditions. We look just fine from the outside until we let people know!

I realized this day that I had it out with my hubby, after he called me helpless, and then I felt hopeless for a while until I really got my senses together. To ask for help will only help keep us independent. Here is where I'm going with this...If we don't ask for help while our world is crumbling around us, and we lose all sense of reality until someone has to literally take over for us, that is not the answer. If we see that the foundation is beginning to crumble, we should ask for someone to please help us to strengthen it again so we do not fall apart and lose everything that we ever were or ever worked to be. It's kind of like when you press the refresh button on your computer!




Wednesday, March 30, 2011

"I'm Thankful to See The Next March 29th!"


This is in Chronic Babe's Blog Carnival # 26, "I am thankful for..." Last year on this day, March 29th, 2010, I was at Piedmont Hospital in Atlanta, GA on my first night of recovery following right shoulder replacement surgery. I am writing this post on March 29th, 2011, thankful that I have made it a full year with a wonderful new shoulder! I wouldn't be here today if it weren't for such a wonderful orthopaedic surgeon. He is the best in town, and that is why I picked him. My shoulder had collapsed in Oct. of 2010, and I waited until the end of March that year for that particular doctor to replace it. I could have had another orthopaedic surgeon from another group do it sooner, but I chose him! Thank you, Dr. D! I also would like to thank my wonderful friends from the Young Professionals Arthritis Group. They had brought me food as I recovered. Thank you dear friends, and you know who you are, Susan, Ang, Carlene, Kelbi and Michelle for being wonderful company to talk with and for taking me out when I was stuck at home and couldn't drive yet.

There is so much to be thankful for in this past year. With this shoulder replacement, I was able to get back into an exercise routine that helped me to get my strength back. It helped me to get a routine. Not even 7 months after my shoulder replacement, we were matched with a birth mother! What a wonderful gift to get well for! Thank you to that family for choosing my husband and I to raise Michael. I don't think I have ever been more thankful for anything in my life. With my health on the up rise, I could look forward to being a mommy for the first time in my life!

Although we had our rough times preparing for Michael to come home to us--meaning that the birth family almost changed their minds when they found out I had arthritis. They almost decided against my being Michael's mommy for fear that I couldn't do it because of my joint problems. So thank God for my Dr. W! He agreed to speak with the birth family to let them know that I would be a good mom, and that my arthritis would not prevent me from being able to raise Michael. So thank you, thank you, thank you, Dr. W!!!! I will never forget what you did to change our lives from husband and wife to daddy and mommy!

Thank you so much for all of the support that I have received online. Who would have guessed that people that I never met and probably will never meet in person would have given me so much encouragement and also have made me realize that blogging isn't just for me, it helps others. I am so thankful for all of you out there in cyberworld that have read my blog and have commented and given responses and replies. You have helped me to use my blogging and now Blog Talk Radio to help others in their journey to help themselves by helping others just by telling their story, and by helping themselves by the sheer joy of knowing that you helped even just one person with your story! What a wonderful feeling!

I am thankful that I decided to blog about the pain of waiting to have my shoulder replacement because had I not done that, who knows where I would be today~one year and a half since I began my blog! So thank you all my followers, friends, doctors, cyberfriends, facebook friends, chronic babes, and family that has been there for me and I for you! Remember, if it weren't for you, there would be no blog, and if it weren't for me, this blog would suck! So my story of my struggle has brought humor, love, pain, sadness, and most of all a great read for you all! Thank you all for listening and being there! Hang in there because ya never know when the next joint will need replacing!!!! Blessings and healing to all of you out there!

Tuesday, March 29, 2011

A Note to Us (Body, Mind and Soul):

A Note to Us (Body, Mind and Soul):



I thought that we had finally reached an understanding. I know that you will sometimes have days when your muscles will tighten up so badly that you can't move them. You will still wake up every single morning with stiff joints that will get better as the day progresses. I know that there are still some unknowns like when the other hip and shoulder will collapse and when both knees decide to totally give up and collapse all together. But what is up with you right now?

Why are you not communicating with me again? We were doing so well for a while! We were able to work together to eat well, exercise, and enjoy life. Now, you are sending out these strange new symptoms from the Body to the Mind and it is really irritating to the Soul! There are hot flashes, sweats, an increase in blood pressure, tachycardia, a decrease in sleep but an increase in sleepiness and fatigue.  The Mind gets these symptoms from the Body and automatically thinks it's something hormonal! Is it something totally new?  Is it menopause or my thyroid? Have we put on weight? Oh my, we have gained 25 pounds in 6 months!!! OK, why has the body put on so much weight? The Mind is obsessed over the weight gain! It is becoming too much for the Soul, for our spirit! It's upsetting us and making us depressed! 25 pounds isn't good for our joints, ya know. We are trying to conserve what we have here!


OK, the doctor said it isn't menopause or the thyroid. Let's really think about it...What is different? 7 months ago, we started a new fibro med, Savella. We looked up the side effects and to our amazement, they are all of our problems except weight gain. Now there are people that have said they gained weight on it. It is an antidepressant, and they do cause weight gain in some people. These particular side effects from Savella that we're experiencing are actually adverse reactions!!! Don't stress, don't stress, don't stress! We will wean ourselves off it. That is the responsible and right way to do it. So we begin...


What are we doing? We are having withdrawal symptoms coming off Savella. We wouldn't be having these symptoms if we tapered the dose, but instead we stopped taking it cold turkey. We did think about it for a good 15 minutes. We went through the pros and cons. We decided to just stop it because we became afraid of all the cardiac symptoms that we were having. We wanted them to stop. We didn't want to have anymore harm done to our heart than what may have already been done! So we just stopped it. To rationalize what we did, we thought about if we had been allergic to the medication, we would have just stopped it; wouldn't we? Now tomorrow we see the pain doctor. What will he tell us? Oh dear!


We just want to feel better. We want to be able to go to belly dancing class again next week and to attend aqua aerobics without feeling dizzy. We were feeling so good. The reason we went on Savella is because the migraines came back so we went back on the migraine medication. By doing that, we went off the medication for fibro and went on the new medication for fibro, Savella...and here we are today.


We are a mom now. We have a 3 1/2 month old baby boy. We must all work together and be on the same page to be strong enough to take care of a new baby. He is getting so big, and we must be healthy to hold him and carry him around the house. 


We are a team. Remember what it was like just 6 months ago when the team was working so well together. We were the right weight. Our joints did not ache every time we bent over and picked up Mick. Our fingers did not stiffen every time we tried to put his diaper on. 


Come on Team Dana! How can we get the team back? When the withdrawal symptoms are better, let's start exercising more! We already walk together. We already attend aqua aerobics together. We signed up for our next belly dancing class that begins next week!


Come on Team Dana! Let's work together Mind, Body and Soul! 

Dear Body, please tell the Mind when you need more help with your symptom checks. Dear Mind, please look toward the Soul to give you strength when you begin to feel depressed and confused by the Body's symptoms. Dear Soul, please do not give up on the Body and the Mind because we need your Spirit to keep us in check! We need all of you to keep Dana all together as a whole person. 



Thank you so much! Hope to hear from each of you soon (Body, Mind and Soul),

Love,
Dana



Friday, March 18, 2011

I Can Be a Mommy & Have a Chronic Illness!

In Chronic Babe's "I can do it!" we talk about something you thought chronic illness would never let you do until you mustered up the courage and went for it.

As you know from following my blog, my hubby and I had been trying to adopt a baby for about 6 years now, and you also know that I have several chronic illnesses that cause pain, fatigue, disability and joint replacements (among other things). Well, I have always thought of myself as a brave person and a strong woman. I was strong long before the chronic illnesses became permanent, so at least I had a good foundation! I never realized how strong or how courageous I truly was until my body tested me to the extremes, and daily life became more and more challenging. I realized when I became so overwhelmed that I just needed to step back and take a good look at myself. I had gotten overlooked. It was awfully foggy at the time and hard to see ME through all the CHRONIC STUFF! When I finally took a good hard look at myself, I realized that I didn't change at all. My health changed. I was still the same Dana that I had always been; well, I was a bit more experienced and a lot more educated about the world. I didn't realize that of course until I saw myself again for the first time.

I still had the same hopes and dreams; the same values; the same beliefs; the same goals. I had to tweak a lot of things to fit a newer, different lifestyle, but above all, I found out that I can accomplish anything and everything I set out to. Now I have to constantly tell myself, remind myself if you will, that things that once were accomplished easier, faster, and more directly are now done more slowly, carefully and what seems to appear as a more round-about way. It is an amazing discovery! I can have chronic illnesses, have goals, accomplish goals, and not lose sight of ME! I love it.

So what is so important about this. Well to me, and to all of you with similar issues, when you become Chronic Illness instead of Dana, that actually becomes your identity. You lose yourself. You lose that want for life, to live for anything including yourself. I'm not even being extreme. I'm not even talking about suicide or anything like that, although it could get that bad for some people if you don't find yourself quick enough. For me, I lost who I truly was--my spunk, my love to laugh, to dance, to see the beauty in things, and to want anything for myself.

When my hubby and I were married, nearly 11 years ago, we vowed to have a family. We new we wouldn't be complete without children. That was something that we wanted for ourselves for so long. Although, we continued to go through adoption agency after agency, the foster care system, and even adoption facilitators (as well as advertising with a facilitator online), a part of me thought it would never happen after approaching the 6 1/2 year mark. I began to fear that maybe it was God's way of telling me that I "couldn't" do it, I "couldn't" be a mommy.  I started to bury the goal beneath the chronic illnesses. We signed with a new adoption place in December of '09. I started to come out of the fog and realize that I needed to start working toward that goal, to be a mommy. I knew if I didn't find that hidden "mommy" inside me, she would be lost forever. I knew I didn't want to lose that want. It was something that was highest on my list of goals. We made a promise to ourselves and God on our wedding day to have a family, and here I was, 35 years old, still childless!

The moment we began with this adoption place, filled out paperwork, had our physicals, got our fingerprints and background checks, and did our home study, Dana had surfaced! I once again was getting those wonderful "mommy" feelings!  Thank God. We waited and waited with this place to be matched with a birth mother.  It felt like eternity! I knew there was a baby out there for us, and that was a good sign to me that I was hopeful once again to be a "mommy." We right away put the nursery together, decided on a theme (forest animals), began decorating, and we bought our first baby layette of bath towels and onesies and set it in the nursery. Jim put the crib together. We made our photo album up to handout to birth mothers that fit our preferences. We were open to any gender, up to a year old, any race or creed and a sibling up to age 8 as well. We began to prepare family and friends. We had our website put together and were linked to as many as 15-20 other websites. We even made a video welcoming a birth mother and baby into our home. I painted a gigantic heart tree and hung it behind the crib. We waited...

The most important thing here is that the waiting wasn't painful. We prayed a lot and had faith that there was a baby out there for us. We thought the baby would most likely be of another race because of statistics, so we prepared family and friends for that. And we waited...patiently...I actually had something in my life to wait for, to dwell on, to pray about besides my chronic illnesses. It was a welcome change of pace.

Then, when it felt like time had stood still, we got a phone call in October, the week before my mom's birthday. A birth mother and her mom had chosen us to parent. Wait a minute...What did she just say? OMG! The first thought that came to mind was, already?  After 10 months with this adoption place, I suddenly felt like we hadn't waited that long. I know, too funny, right?!  Jim was out of town at a university outside of Philly for the weekend. He hardly ever goes out of town, but he was attending a conference. He was in the middle of a Nor'easter as well! It took him 3 hours to drive 70 miles! I hadn't heard from him in hours. I was worried and excited all at once. I didn't want to call him while he was in a storm, so I waited for him to get to his hotel.  I didn't want to make a decision to speak with the birth mother and her mother without talking with my hubby first about the situation. It's only right; after all, we are a team!

I explained the situation to Jim who safely arrived at the hotel. He was so excited as well. The next day, the birth mother's mother called me at home. We spoke for two hours on the phone and hit it off well. Then I spoke briefly with the birth mother. She was very sweet. I told them that they could speak with Jim when he returned home. They agreed, but felt so far that they wanted to go ahead with this. I also agreed. Jim talked to the birth mother 2 days later. It went well. We talked all 3 of us for a while on speaker phone too. We laughed about Jim playing sports, and whether or not Michael would be a good athlete or not. She wanted us to name him Michael Robert. We agreed. We agreed to raise him Catholic like ourselves, to say the rosary, to send pictures of him to the family. We had no problem doing this. Michael was going to be our son!...

Meanwhile, our last name was leaked somehow by the adoption place. We don't know how, but what was done, was done. They googled me and found out that I had several chronic illnesses--joint diseases. Our adoption coordinator contacted me to say they were having second thoughts. I was devastated! Was I right in the beginning to think I couldn't be a mom? Was I not cut out to be a mom after all?  When the birth mother's mother called me, she said some awful things to me about my illnesses and my inabilities to be a mom to Michael. She obviously didn't realize that there are people who are great moms who are in wheelchairs, who don't have the ability to use their arms, who can't walk, who are blind or deaf. To some, these are seen as inabilities to be a mother, but to those that are moms and "can do it", they are just differences. They take care of their children but find other ways to reach the same outcomes. I couldn't think of how to change their minds. I felt so hopeless and helpless, I felt myself slipping back behind the chronic illnesses again. I began to lose Dana and the mommy I was to become in less than 2 months. Think fast! What to do? I offered to fly up to meet them. I offered to have my rheumatologist call them and let them know that I am perfectly capable of taking care of a child...

They just needed time...

Time for me at that moment just made me slip further and further behind the cloud...Then the phone rang. They agreed to speak with my rheumatologist. I don't know what he said to them, but after I arranged for a time for him to contact the family, 24 hours later, the birth mother's mother called and left a message for us to contact her. We called back immediately.  She said that they thought about it all, and they picked us for who we are as a family and how we will raise Michael. Anyone can get sick or hurt at anytime, and we have no control over it, so they wanted us to parent Michael. We said thanks and that we had prayed so hard over this. We felt so connected to Michael already, calling him Michael to everyone we know. He had a name, he was our son already! The phone call we received was the weekend of the feast day of St. Gerard Majella, the patron saint of childbirth and motherhood, also my mom's birthday. Michael was due on the Immaculate Conception. We prayed to St. Anthony every single day for a miracle. All of a sudden, we received a wrist rosary with St. Anthony on it, then a St. Anthony key chain, and while visiting friends in Boston, I looked in the directory to find the nearest Catholic church. 2 minutes from our hotel was the Shrine of St. Anthony. We lit a candle there and said a prayer again for a miracle!  Also, our hotel # was 128, which was his due date 12/8. The birth mother and her mother gave us a gift of a picture of the Holy Family: Mary, Joseph and baby Jesus. We were still in the hotel for the feast of the Holy Family because we were out of town the entire holiday season.  We found out also that the birth mother's middle name was Mary and the birth mother's mother's middle name was Joe, so Michael was like Baby Jesus at the Inn! So many wonderful religious significances in the birth of our baby. We are going to baptize him June 26 which is the weekend of the feast of St. John the Baptizer! Might as well keep with the theme!

Ok, so speaking of theme; I found out that I can be a mommy! I am a darn good mommy. I am home with Michael every day while Jim is at work. I have been feeling great. I am able to do everything that any other mom can do, but sometimes I just have to go about it a different way. I might have to lay him across my lap or carry him in sling. I might have to prop him up on a pillow and feed him a bottle that way. I might have to have Jim open the formula cans so I can pour it into the bottles. Some days, we have lazy days together where we lay in bed together and play in bed. He has adjusted well with his mommy and her chronic illnesses. Ya know, that is the only way he knows it after all. It is normal to him. I change his diapers just fine. As a matter of fact, as long as the supplies are all laid out so I can easily reach them and get to them, we get those messy poopy diapers taken care of in jiff!  We have lots of fun together. I am enjoying being a mom so much. Thank God I didn't keep Mommy Dana hidden behind Chronic Illness. I am so much more than that!

Our big adventures are going to the Farmer's Market together, doctor's appointments (he knows all my doctors now), and taking walks with the stroller and his furry brother Cookie! Life is so beautiful again! I'm so glad I have Michael to share it with, to teach about life and love, and to understand about people with chronic illnesses. He will be such a compassionate and understanding person because he had ME for a MOMMY! All because I decided to search for myself again!

Thanks for listening!

2012

2012
Performance 5 days before my Hip Replacement Surgery!

2012

2012
Performance 5 Days Prior to my Hip Replacement Surgery.

Belly Dance

Belly Dance
Before the Performance 5/6/12
Watch live streaming video from arthritisfoundation at livestream.com