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Being Chronically Mommy...

Welcome to the second in my chronic pain blog series. My first was my most well-known about my life struggle, balance, etc. with chronic pain and illness in "I Already Gave My Right Arm To Be Ambidextrous!" It is now titled "Now Read My HIPS!" and the focus has changed a bit to be more about how I am a woman with several joint diseases and conditions with a shoulder replacement and two hip replacements and am belly dancing! Visit Now Read My HIPS! to follow that entertaining, fun journey ( I also have a Blog Talk Radio Show with the same title about chronic pain and healing.

This blog is a little bit different. It has been focusing on my being a mommy and having a chronic illness. I have been and will continue to focus on health and pain info as well that I once wrote about in Now Read My HIPS! I think it is important to separate this from the rest of my life. It is not easy to have a chronic illness, but adding a child to the mix certainly has its share of trying times as well as beautiful, unforgettable moments.

I am so grateful for our little boy Mick. I can't believe that he is 6 years old as of December of 2016. Time has flown by! He is a dream come true. He has completed my confusing, complicated life. In a very huge way, he has made my life a lot more worth living. Although I have a wonderful husband, we always wanted a family, and I feel like we are now complete and happy. I have something to wake up to, and I have something to live for~Mick! It really is it's own microcosm of my life~Being Chronically Mommy!

...Being Chronically Mommy!

...Being Chronically Mommy!
...Being Chronically Mommy!

Baby Ticker

 Baby Birthday Ticker Ticker
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.

Families are Forever

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Monday, April 3, 2017

I'm Not as Strong as Everyone Thinks I Am, Yet in My Journey I Will Become Strong!

It seems as though the popular phrase these days is "You are so strong." I feel like I hear that all the time. I have to be honest, that phrase is making me sick, people. Quit saying it! Ya know what? I'm actually not that strong!
I'm rather weak in the literal sense of the word. My physical therapist says that I have weak muscles, weak joints, weak bones, weak tendons and ligaments that attach the bones and muscles and joints, etc.
My hands and fingers are weak. I have a brace for my wrist, and a splint for each finger. My knees are weak. I have a knee brace for both knees, and my Avascular Necrosis is worse in both so I am just waiting for their collapse. My ankles and feet are weak. I have to have ankle and arch supports, or achilles tendinitis and plantar fasciitis ensue. Currently I have a hairline stress fracture on top of my left foot from walking or standing. My spine is weak. My hips were so weak that they have already collapsed and have already been replaced. My shoulders and elbows are weak, leading to one shoulder replacement thus far. I have had shingles 24 times! I'm on a 24 day course of steroids right now for inflammation of a facial nerve from one of my shingles outbreaks. On the steroids, my immune system was compromised more, so now I am having yet another outbreak!

Why am I telling you this? I'm telling you this because I have several autoimmune and auto-inflammatory diseases. I wake up every morning just like everyone else does. The difference is that it takes me 30 minutes to get out of bed because I am so stiff and sore and achy and fatigued and just plain worn out to get my butt out of bed. I move very slowly for about 2 hours after finally maneuvering my crunchy self out of bed.
I take myself directly from my bed to the couch because it is too hard to do much else. Once I take my 10-15 morning pills, I am capable of being a mom to my 6 year old son Mick. I get his breakfast ready, his morning meds, help with his clothes, and then we walk together to his school. I walk there and back which is less than a mile. When I return home, I generally also return to the couch. I love the couch. I set everything up around me that I will need for the day. I have my phone, water, the TV remote, a snack, a book to read, something to work on, my laptop, my pillow and a blanket.

might have some errands to run or appointments to go to while he is at school. I might have some laundry to do. I might have to take Mick to dance class, soccer, baseball or choir after school. For the most part, I am on that couch all day except the walk to and from school and going to bed at night. I might decide to throw in a shower now and then when I get dirty too.

Now to my point...

I'm writing this because I am just so so so tired these days. Sure I do what I need to do for Mick and for my husband, but I am barely getting through the day here. My energy is at a zero. My tank is on empty. I have no extra stores. I have no idea what to do. I have tried resting all day, but it doesn't revive me. I have tried exercise, but it doesn't renew me.

If you are familiar with the Spoon Theory, I am out of spoons. I have no spoon reserves! I have not begged for, borrowed or stolen any spoons. I am just totally SOL! (I will accept donated spoons at any time however. Thanks in advance.)
Family and friends really don't understand. They think because I look good, and I don't look sick that I am perfectly fine. They also believe that because I don't ask for anything or for any help that I don't need anything, anyone or any help. I never call, text, email or send a message via carrier pigeon to my family or friends asking for anything. Interestingly, I don't get calls, texts, emails or messages from carrier pigeons from family and friends asking me if I need anything either.

I have had 10 surgeries, and never once was anyone here from my family while I was in the hospital. Also, I have never had a visitor in the hospital besides my own husband. I have had 3 joints replaced, 2 additional surgeries on my shoulders, 2 additional surgeries on my hips, and my gallbladder removed. I had 2 laparoscopic surgeries. I also have had 4 minor eye procedures done. They are minor yes, but they still have to stick needles in your eyeball. Your eyes are open so you see a needle coming straight at you! It's horrifying! I had to drive myself with an infant after having tear duct plugs placed, removed and tear ducts cauterized. The cauterization is painful even with local anesthesia. They literally burn your tear ducts closed! It smokes and BURNS, actually BURNS! I have had 2 epidural pain injections and nerve blocks in my SI joints. I have had 2 endometrial biopsies in the last two years. Do you know that they don't give you anesthesia for that? They just cut pieces of your endometrial wall without any numbing or ice or anything. I go every 4 weeks for an I.V. (Remicade) for my psoriatic arthritis. I always go alone and return by taxi home.

Still I know what everyone is thinking as they read this, "You are so strong!" No, I'm not! Every single day. I lose a little bit of hope. Every single day, I fear for the next day. Every single day, I find it harder and harder to leave my house. Every single day, I find it harder just to do the simple thing. But ya know what? Every single day, I pray a little harder too. Every single day, I still get out of bed no matter how hard or how long it takes. Every single day, I continue to get dressed. Every single day, I take all my medicine. Every single day, I teach my son how to love others, how to be happy, how to grow up to be a strong husband and father some day. Every single day, I remind myself that it's ok to be weak. Every single 

day, I remind myself to ask for help. Every single day, I remind myself that I can't do it alone. Every single day, I remind myself that I have gotten this far, and I can keep going. Every single day, I remind myself that, I may be weak right now, but if I play my cards right, I think I might come out with a good, strong hand.What's the secret? There really is no secret to being strong except figuring out that you had the answer all along. All of us who are weakened physically by chronic illnesses, somehow God has blessed us with a strong will, a strong heart and a strong soul. We have to figure that out on our own though. We have to get there on our own. For me, the realization comes every single day when I look at my son, and I understand that I am his STRONG Chronically Mommy! So...I may not be as strong as everyone thinks I am right now, but it is in my journey that I will become strong!

Friday, February 27, 2015

The World Has Stopped! Chronically Mommy Has The Flu!

Well, It has been a VERY long time! I am back y'all! I missed all my followers out there. I have just really had a trying couple of years with a little boy, chronic pain, chronic autoimmune crap, chronic everything, but mainly I have been so worn out. By the end of the day, I just want to sleep. Of course, as you all know, when you have chronic illnesses and chronic pain, you can never actually sleep at the end of the day, but you can dissolve into the sheets and just melt into nothingness! That is what I have been doing every night for about 2 years it seems. Here and there, I have found time to do other things, but mostly I do my mommy stuff and go to bed.

So right now, I have the crud, the yuck, the blah, the flu!!! I get the flu shot every single year like the obedient chronic mommy that I am. This year Mick and I got ours together at his pediatrician office. My doctor informed me that it is only 23% effective this year. Great. Maybe I should look at it in a positive way, that I was the lucky one that got a flu shot and the flu...nah! This ain't lucky! I have been miserable. Mick was sick but only had a fever for maybe 12 hours at the longest. Then he had the coughing. He has asthma, so I made sure to use the nebulizer on him before taking him into the doctor. When I got him into the doctor, he said that I did fantastic! Great job Mommy!!! His lungs were great, no fever, no sign of flu complications and no infections. He is good. He has a small lingering cough, but it isn't worrisome.

As for me....well I started feeling sick last week on Thursday or Friday. I started Tamiflu on Sunday afternoon, and took the last pill today. I do feel better overall, but I am still coughing. I still have head congestion. I still feel so tired and fatigued. I still can't concentrate. The achiness is so much better than it was, thank goodness. It was horrible. I thought at first that I just had a cold and my autoimmune diseases were flaring causing severe pain everywhere. Well, come to find out that the flu causes severe aches and pains! It is no joke! Lemme tell ya!

I have made sure to get plenty of rest, plenty of fluids (water and OJ), and have been eating healthy foods. But I also have been eating whatever I will eat. I haven't been feeling like eating anything so if I have a taste for something, I eat it! I have been staying out of the cold air because it makes me cough and wheeze. I have been taking warm baths and showers. I like the showers to be steamier for my chest and sinuses.

I am amazed at how much Mommy is in control of and in charge of. When we are sick, it is clear that the house doesn't get clean, dinner doesn't get made, toys don't get put back where they belong, and important things don't get done! I think that for many of us, we don't look sick most of the time with our chronic illnesses, then when we get something acute like the flu, and we are down for the count, our significant other and our children, are really caught off guard. They are seriously surprised! My hubby asked me if I did the dark and light load of wash the other day. I was still in my P.J.s, and my hair was a greasy mess. I did nothing, absolutely nothing! I just sat on the couch and looked at the TV. I didn't even really watch TV. I just looked at the TV. That is when you know you are sick! Now the garbage disposal is broken, the water heater needs replaced, and my son flushed something down his toilet that has made it unable to flush or unclog. So the plumber has been here all day with me. Meanwhile, we have a weeks worth of dirty dishes piled on the countertop because of the garbage disposal, wall-to-wall hot wheel tracks because I haven't picked anything up, and laundry in piles in our bedroom because we had to get the water heater replaced today. The world has literally stopped around me! Nothing is happening! So I am writing my blog post. I figure I'm due.

Michael is 4 now. He is in pre-school at a Methodist church nearby. It's about 7 miles from our home. Of course with Atlanta traffic, it takes 30 minutes to get there and 30 minutes back. Nothing is ever easy! It is always so much harder when you are in pain, and then when you pile the flu bug on top of that...I have no words to describe it. I would suggest that you still get the flu shot. It still will guard against those particular strains. You never know which types will end up being the ones that go around, so better safe than sorry. My two cents.

I hope to talk to you all more often and soon!

Monday, May 6, 2013

“But you’re too young”

I fight very hard to spread awareness and educate those who are ignorant to what autoimmune arthritis is. When someone sees me park in a disabled parking spot and then tells me I can't park there because it is for someone who has a disability, I get very angry! I first think of it as a teachable moment. I tell the person that I have autoimmune arthritis. Of course, people never totally hear you! They many times will automatically come back with some kind of story about their grandmother having arthritis in her knee or something similar. Then they will end up somehow coming back to you, saying, "but you're too young..." Again, I will continue with the education. I will explain that autoimmune arthritis is not the same as your grandmother's arthritis. Then I will explain that even children can get autoimmune arthritis. Although, I am upset and mad that people don't know this, I try to use this as an opportunity to educate them and make them aware.

Because of many of my doctors' mentality of "but you're too young..." it took until I was 27 to finally have a name for my autoimmune arthritis disease. I was ignored, treated like a hypochondriac, and basically pushed away becaused of that mentality and by health professionals too! It isn't just uneducated, ignorant people who question whether or not I am too young to get arthritis. Doctors have also fallen into the category of people who need to be made aware of what autoimmune arthritis actually is and who it affects. It can be exhausting, overwhelming, and frustrating dealing with health care professionals who should know better, who should be keeping up with the current health diagnoses to know that even children get arthritis. It isn't just an old person's disease!

I look at it also from the angle that when I was very young, still a child, and I was trying to find out what was wrong with me, not one doctor tested me or looked into autoimmune arthritis diseases. When I was a child, there weren't many doctors that specialized in that area, especially for children, and very few doctors looked into a child having a type of arthritis because of the mentality of "but you're too young..." Although this has changed somewhat, and now there are pediatric rheumatologists to help diagnose young children earlier and without hitting a brick wall of "but you're too young." Of course, even though there are now pediatric rheumatologists, there are very few and not nearly enough to offer to those suffering from symptoms of autoimmune arthritis. If there were more pediatric rheumatologists, more children would be diagnosed sooner and more doctors would understand that with autoimmune arthritis there is no "too soon."

I know that when someone says to me or someone I know "but you're too young," that I get angry. I try to use that emotion toward gathering the information to teach those that are uneducated. There is no age on autoimmune arthritis disease. Everyone is different, and everyone is affected in different ways as well.

Saturday, April 13, 2013

April edition of the Patients for a Moment (PFAM) blog carnival--The Stresses of Chronic Pain--Misconceptions and Stigmas!

Misconception--n--a false or mistaken view, opinion, or attitude

Stigma--n--a distinguishing mark of social disgrace; a small scar or mark such as a birthmark; any mark on the skin, such as one characteristic of a specific disease; any sign of a mental deficiency or emotional upset

The most wide-spread misconception about chronic pain is that it results from a psychological disorder. Other misconceptions are that those with chronic pain should be able to tolerate their pain better as time goes on, that they are using pain to get narcotics, and that they exaggerate their pain to gain something like sympathy or money. There is a real catch 22 dilemma too. If they talk about their pain, they risk being labeled as hypochondriacs or fakers, and if they hide their pain, others will think their pain is insignigicant. It is so stressful that even the most stoic person will show signs of how taxing it is on a person. Chronic pain patients suffer daily from guilt, demoralization, and depression due to the negative perceptions of other people. You have probably heard the saying, "Pull yourself up by your bootstraps." For a chronic pain sufferer, you can't just talk yourself out of the pain. Then of course we have the patients who truly believe they must have sinned. They ask themselves everyday what they did wrong to endure chronic pain. Some call this "Job" Syndrome. 

There is an overall agreement with patients of a generalized frustration about the public's perception of chronic pain. When the public tells you that you look fine so therefore you must be feeling fantastic, this says that pain is something that is worn on the outside when it really is something we wear on the inside. Men put more emphasis on how chronic pain affects their work, and women put more emphasis on how it affects their relationships. That makes sense though. Well, it does to me as a woman. I am worried if he will still love me like this, and he is worried if he can sit at his computer to complete his workday. Our coworkers, family and friends manifest their perceptions in so many ways, such as raising their eyebrows at you at work, a friend asking why you aren't feeling better yet when it has been a week, and even family members making the decision to turn their heads and minimize the problem. We have staggering statistics out there that one in three Americans suffes from chronic pain. Even with these statistics, there are societal biases in the workplace, restaurants, and even movie theaters. They are all designed for pain-free people!
People who suffer from chronic pain say that a huge factor behind the stigma is the invisible nature of most chronic pain, " You don't look like you're in pain." When people have easily visible proof of pain like swollen joints, canes, wheelchairs, braces, etc, they tend to report that the evidence of pain offers them validation in the eyes of others. If someone asked the question, "What does pain look like?" The answer is really more the visible evidence of the pain. You cannot actually see pain. 

Stigma comes from the health care professionals, family, friends,  the general public, the government, insurance companies, and even from chronic pain sufferers themselves. It can arise from within. Pain sufferers often experience guilt and therefore they blame themselves for their own pain. Health care professionals often present psychological obstacles for chronic pain patients. They believe the patient didn't follow the instructions, is receiving financial or some other secondary gain from receiving pain meds, or that the the patient is imagining the pain. Patients tend to go from one doctor to another to find relief with the burden being on the patient. Some doctors may focus too much on helping patients accept their pain and not enough on finding ways to help the pain. Why can't doctors work on treatment plans instead of telling patients they will have to just learn to live with the pain? This can lead to family members, especially spouses, feeling a sense of frustration that they can't do more to help the pain. Families tend to go from one extreme to the other, from gushing over the patient to acting angry even rejecting him. Many patients, especially as children will cope by hiding their pain. They fear rejection. Some parents will refer to the chronic pain as the "growing pains". People are afraid of people with chronic pain because they look so normal. They are afraid they could end up in the same scenario. They don't know how to act. They also fear they will "catch it".

"God I envy your life!" You hear this a lot because you may not have worked full time in the last two years. So many people just can't relate to what life would be like with chronic pain, and it just seems easier. Also, there are problems when you are job hunting. They may look at when you had those long periods of time where you didn't work. They will interpret that as a red, or warning, flag. You might be told that there is someone more qualified for the position than you. Chronic pain cannot be objectively validated like cancer, heart disease, or stroke. It can be more easily dismissed by employers and employees. 

Inaccurate information about arthritis persists and is often spread. Such as:

  • Arthritis is an old person's disease.
  • Arthritis is induced by a cold, wet climate.
  • Arthritis can be cured.
  • Arthritis is caused by a poor diet.
  • Arthritis consists of only minor aches and pains.
  • "You felt fine yesterday....why so tired today?"
  • "You have arthritis, you can't......"
Unfortunately, our misconceptions can become barriers to good pain relief. Some of your ideas about the use of pain medications may be based on these common misconceptions.

  • I Will Become Addicted
  • I Will Run Out of Pain Relief Options if I Begin Treating Pain "Too Early"
  • I Should Just Try to Stand the Pain 
  • Some of the Side Effects of Medication Are Just as Bad as the Pain
Pain patients are speaking out more publicly and getting more publicity. On a local level, they are banding together in support groups to fortify each other. It is only a matter of time until this expanding vitality impacts the public consciousness to finally put an end to the stigma of chronic pain.  


Friday, April 12, 2013

HAWMC Day 3 – Wordless Wednesday

HAWMC Day 3 – Wordless Wednesday


This picture symbolizes my conditions/diseases and my experiences as a person and mommy with joint diseases and as an advocate, an activist, a volunteer and a blogger!

Thursday, April 11, 2013

HAWMC Day 2 – Introductions

HAWMC Day 2 – Introductions

For day 2 of Health Activist Writer's Month Challenge, I am going to talk about what it is like to have a joint disease. There are 5 things you should know about my condition(s). 

First, I have Psoriatic Arthritis with spinal involvement in my cervical spine, lumbar spine and SI joints. I have not been diagnosed with Ankylosing Spondylitis, but have been told by an orthopaedic spine surgeon that I most likely have a rare more severe form of Psoriatic Arthritis called Psoriatic Spondylitis. PsA is a chronic, inflammatory disease of the skin, scalp, nails and joint. The the psoriatic skin cell forms lesions. Second, 30% of people with psoriasis also develop inflammatory arthritis, which is PsA. The psoriasis precedes the arthritis in most of the people with PsA. The joints at the ends of the fingers are most commonly involved, but other joints can be involved too like the wrists, knees and ankles. Other symptoms that usually accompany it are in the fingernails and toes, and range from small pits in the nails to near total destruction of the nails, resembling nail fungus. Third, about 20% will end up with spinal involvement called Psoriatic Spondylitis. That inflammation in the spine can lead to complete fusion (Ankylosing Spondylitis) or only involve certain areas of the spine. When spinal involvement occurs, there is a greater chance of testing positive for HLA-B27, which is a genetic marker. Fourth, there is currently no known cure. There are treatments and medication only. Although the exact cause is unknown, heredity is thought to play a strong role. Up to 40% have a close relative with it. In identical twins, if one has it, the other has a 75% chance of also having it. Disease course and prognosis varies from person to person. The severity of the rash does not determine the severity of the arthritis. Also, the skin condition does not always occur at the same time as the arthritis symptoms.

Fifth, a number of medications can be used to help treat the symptoms of PsA: NSAIDs (non-steroidal anti-inflammatory drugs) to reduce the inflammation, joint pain and stiffness. DMARDs (disease-modifying anti-rheumatic drugs) are sometimes prescribed in more severe cases. All four of the TNF-a inhibitor medications approved by the FDA for ankylosing spondylitis are also approved for treating psoriatic arthritis. A dermatologist may also prescribe various medications to help treat the skin condition caused by the disease. Exercise is necessary. It helps keep the muscles strong to protect the joint. Not using a sore joint will cause the muscles to become weak and result in more pain. Other management tools include physical therapy, heat for stiffness, ice for swelling, physical therapy and surgery for those with severe joint damage. (Spondylitis Association of America

Here are five more things you should know. First, I also have Avascular Necrosis (AVN). I was diagnosed in my hips, knees and shoulders. Also known as Osteonecrosis (ON), it affects about 20, new patients each year in the U.S. It mostly affects patients between 20 and 50 years old, with the average being in the late 30's. [Children from 2 to early teenage years get a form of ON called Legg-Calve-Perthes disease (Perthes for short) named after the three doctors who first described it. Treatment for Perthes is completely different than for adult ON.] It does not affect life expectancy so several hundred thousand patients are living with this disease in the U.S. To understand ON, you need to know that bone is a living tissue with cells and a blood supply. The word "osteonecrosis" means "death of bone", which occurs from the loss of the blood supply to the bone. Most people tend to use the term Avascular Necrosis, and AVN has become very popular in use because it's shorter to say and write. The risk of getting AVN is very small if the person is completely healthy, most likely less than one in 100,000. Most people who end up getting AVN likely have an underlying health condition. People that are over the age of 50 probably develop AVN from a fracture of the hip or very rarely from a disease of the major blood vessels of the lower leg. There are post-traumatic or non-traumatic forms of AVN. 

Second, post-traumatic AVN is a common cause of AVN that includes displaced fractures or dislocations. Minor trauma or even most major injury does not often result in AVN. Certain fractures where blood vessels to part of the bone have been damaged may result in AVN. Non-traumatic AVN happens when there is no history of trauma. There are a number of risk factors. They do not know how these risk factors lead to the development of the disease, but they have different ideas. The ideas, however, have not yet been proven. There are some people who seem completely healthy with no detectable risk factors, and they consider the category "idiopathic" or "of unknown cause". Probably the most common cause of post-traumatic AVN of the hip and of other joints is a displaced fracture or a dislocation. The risk factors for AVN can be separated into definite and probably. The most common risk factor is a history of high dose steroid treatment for a medical condition such as RA or Lupus. Low dose steroid treatment is not thought to cause AVN. The next most common associated condition is a history of high alcohol use. The more alcohol you consume, the higher your risk of AVN.

  • Major Trauma Fractures
  • Corticosteroids, High Dosages
  • Blood Clotting Disorders
  • Dislocations
  • Alcohol
  • Pancreatitis
  • Caisson Disease
    (Deep Sea Divers)
  • Lipid Disturbances
  • Kidney Disease
  • Sickle Cell Disease
  • Connective Tissue Disease
  • Liver Disease
  • Postirradiation
  • Lupus
  • Chemotherapy

  • Smoking
  • Arterial Disease

  • Gaucher's Disease

There is no known prevention. It is, however, believed to be true that if we eliminate or treat the risk factors, we can reduce the risk for getting AVN.

Third, 90% of people with AVN have it of the hip, however,  it can also attack the knees, shoulders and ankles in that order. Nearly 3% will have multiple joints (3 or more) involved. We classify the joints the same, the disease progression is similar, passing from x-ray negative to x-ray positive without collapse to early collapse to extensive joint destruction. The knee can be divided into the medial compartment which is the inside of the knee between the femur and the tibia or shinbone, the lateral compartment which is the outside knee, and the patellofemoral compartment (kneecap). The most common involvement is the thigh bone portion of the knee. It is also not uncommon for the tibia or shinbone to also be involved. It is unusual for the patella (kneecap) to be involved. The natural progression of AVN in the knee is less certain than the hip. AVN of the shoulder has an even less certain natural history and natural progression than the knee. The area that is involved is the humeral head (shoulder) which is the area of the head which is in contact with the socket when the elbow is held at 40 degrees of flexion and 20 degrees away from the body. The ankle bone (talus) is not involved with AVN very often. It represents a real problem for both the physician and the patient. 

Fourth, many patients with AVN have had it for a long time before they have any symptoms. The first symptoms are usually felt during an activity and are pain or aching in the joint that is affected. They usually begin slowly and may be sporadic at first. The pain may begin suddenly. With disease progression, the pain increases and is associated with stiffness and loss of motion of the joint that is involved. If the joint is in the leg, limping is common. The hip is the most common joint affected, and the AVN of the hip pain is usually felt in the groin. Stage I of the disease, x-rays appear normal, and an MRI is used to make the diagnosis. When it is seen on x-ray, it is not actually the dead bone that can be seen but the healing response of the living bone to the area of necrosis. The more advanced stages of AVN begin when the dead bone starts to fail mechanically through a process of microfractures of the bone. At some point, this results in damage to the other side of the joint, which requires major joint reconstruction. When more of the joint is damaged in the more advanced stages of AVN, it is less likely that you can preserve the natural joint. Joint replacements today are very successful even in the younger patients with AVN. The physician does prefer to preserve the normal joint when possible, but many do not see the doctor until the AVN is in the advanced stage of the disease.

These x-rays of the hip show the different stages of the disease. At first (stage I), there are no detectable changes on x-ray (fig A). In stage II, there are some changes but the surface is still intact (fig B). As the disease progresses, the surface begins to collapse (fig C) until, finally, the integrity of the joint is destroyed (fig D).

The ball of the hip is called the femoral head and is the most frequent bone involved. It is rare for the entire weight-bearing surface of the femoral head to be involved, but if more than half of the surface is involved, treatments to preserve the ball have a much lower chance of success.

MRI's of Femoral Heads
diagnosed with Osteonecrosis
To diagnose AVN, the first, most important thing a physician can do is a thorough physical exam and take your medical history. When there is a suspicion of AVN, your doctor will obtain one or more tests:
  • X-ray
  • Magnetic Resonance Imaging (MRI)
  • Bone Scan
  • Computed Tomography (CT)
  • Biopsy
Fifth, crutches, canes or a walker help in alleviating pain with AVN. They can also protect the joint between the time of diagnosis and scheduling elective surgery. Limiting weight bearing may play a role in limiting progression while associated medical conditions are managed. Protected weight bearing alone is never an adequate treatment for AVN. It will not result in a cure of the condition no matter how long it is maintained. There are times when a patient has an associated medical condition that may result in being unable to have surgery. Protected weight bearing may be recommended for pain management. There aren't any drugs made for the prevention or treatment of AVN. To treat the disease, we have to understand how the disease develops first. Although there has been considerable effort by researchers, they cannot figure out what causes AVN when it is not the result of a fracture or dislocation. Even though the risk factors have been identified, it is not known if there would be an effect on the disease by eliminating or treating the risks. They are trying several different types of drugs:
  • Lipid Lowering Medications
  • Anticoagulants
  • Hypertensive Medications
  • Bisphosphonates
You do not need to be in a drug study to receive medication treatment for AVN. The meds listed are not experimental and can be prescribed by your doctor. It depends on your doctor's experience and your individual circumstance whether or not your doctor will prescribe one of these meds for you. All of these treatments are still being evaluated more thoroughly before the medical community is ready to accept them as standards in AVN treatment. There are surgical options for treatment. Core decompression is a surgical procedure that takes a plug of bone out of the involved area. It is applicable for mild to moderate degree of involvement which has not progressed to collapse. It involves making a hole in the bone so you must have 6 weeks of protected weight bearing to avoid fracture through the hole. Pain relief has been excellent for many, but it has not been as effective at delaying the progression of the disease in long term. Core decompression usually results in immediate relief of symptoms. However, because the natural progression of AVN of the knee is less predictable, it is uncertain that the core decompression alters the natural history. People with AVN and knee pain who were treated with core decompression have continued to have pain relief for up to 20 years. There is some controversy about this procedure with a few studies that have been showing poor results. When part of the bone dies, it does not heal spontaneously. One way to approach this problem is to surgically remove the dead bone and fill the empty space with bone graft that is either taken from the patient or from a bone bank. The success depends upon the quantity of bone that has died. When you have a regular bone graft, you are using dead bone serving as a scaffold for the body to build new bone around it. The body also has to grow a new blood supply. In vascularized bone grafting, a bone with its own blood vessels is taken from the patient and hoked up to the blood vessels near the hip. The dead bone is removed from the ball and replaced with the grafted bone that carries its own blood supply. The positive to this is that the body does not have to rebuild any new blood supply and the bone graft keeps its own physical and mechanical properties. This works best prior to the collapse of the joint, but it sometimes is used in early or limited collapse of the joint. Healing while filling in the defect will take place, and during that time, crutches or a walker has to be used. The negative to this procedure is that a large piece of bone has to be removed from the lower leg. Some develop pain at the site from where the bone graft was taken. The surgery takes several hours with an experienced team in these techniques. The patient must be on crutches for several months. If both hips have AVN, one may have to be delayed of its treatment for a period during which time the ball may collapse. The location of the AVN is usually in an area of the bone that bears weight. in some cases, the bone can be cut just below the are of involvement and rotated so that a different part of the bone not affected by AVN can become the new weight-bearing area. This cutting of the bone is called osteotomy. It is not very common but may apply to special cases with small lesions. At first only the ball is involved and not the socket of the hip joint. Femoral Head Resurfacing (FHR) is the implanting of a metal hemisphere over the femoral head that matches the size of the original femoral head. It is comparable to the capping of a tooth when the root is still good rather than pulling the tooth and putting in a false tooth. After years, the metal head will gradually wear out the socket and need to be converted into a total hip replacement. It is used more to buy time for younger patients whose extent of disease or degree of progression is such that one of the procedures to preserve cannot be performed. It is still a relatively new procedure that is still being evaluated. A Femoral Head Replacement is basically half of a total hip replacement. Every comment about the Femoral Head Resurfacing also applies to the Femoral Head Replacement. It is a little more extensive because it puts a stem inside the femoral bone. It is more difficult to convert into a total hip replacement. There is no evidence that this is more successful than the Femoral Head Resurfacing either. There is also metal-on-metal resurfacing. There is limited experienceAVN has progressed to a stage where it involves the socket as well, the only options are a hip fusion to make it completely stiff or a total hip replacement (THR). A THR is one of the most successful surgical procedures ever with success rates above 95%! The problem is that with AVN, and the age of the patient, it is not uncommon for the patient to live another 40 to 50 years after a THR. With current technology, it is not likely the THR will last that long. Many doctors try other procedures first to put of  a THR. Of course if the disease is extensive or advanced, a THR may be the only option that makes sense. Work is being done to make more durable THRs to in theory last a lifetime for the younger patients. When AVN progresses to collapse, the only treatment is total knee replacement. Partial knee replacement is not recommended because non-replaced areas of bone can progress. Unless the lesion is very large or the collapse is extensive, most people will benefit from core decompression. Although shoulder replacement is done, the success rate is not as great as the hip and knee. The results may not be as long-lasting. The conservative procedure is justified if it can grant the patient relief of symptoms and delay the need for a shoulder replacement. Core decompression has had good results even in patients with early collapse which is not the case with early collapse of the hip. Ankle replacements have not been very successful in the past. Ankle fusion has been performed with extensive bone grafting. When the ankle bone is diseased with AVN, ankle fusion is not very successful because the bone is dead. There is limited success with core decompression which has been recommended as a trial and only because nothing else works very well. An exterior ankle brace may be necessary. (National Osteonecrosis Foundation





Here are five of my blog posts that I think are helpful to anyone with any joint disease or any chronic pain disease who are also mommies or newly diagnosed.

I Can Be a Mommy & Have a Chronic Illness!
I Never Knew What I Feared The Most Until I Became A Mommy...
People like myself CAN raise a child; there's no reason you should be denied this beautiful experience!
Traveling with Child & Chronic Pain! 
Mick Is 2!--A Mother's Heart Is There Before She Is Even A Mother...

Here are three guest writers that I posted on my blog that I feel are helpful to anyone with any joint disease, chronic pain disease, and especially any autoimmune arthritis disease (more specifically JA) and the newly diagnosed.

What Do YOU Think of When You Hear The Word " ARTHRITIS"?--Ask Parker
Alexa: My Story
My Journey with JRA

Chronically Mommy! 04/10 by Dana Morningstar | Blog Talk Radio

Chronically Mommy! 04/10 by Dana Morningstar | Blog Talk Radio

Chronically Mommy!

Dana Morningstar

Dana Morningstar

Let's talk frankly about what it's like to be a Mommy and to carry around the extra weight of Chronic Illnesses that include Chronic Pain, Disability, Autoimmune Arthritis Diseases, Avascular Necrosis, Fibromyalgia and more.  Let's set the record straight about how we are not weak because of our Chronic Conditions, rather we are strong! We do both; we take care of a family as a Mommy and wake up and go to bed everyday questioning whether or not this is going to be a bad pain day or a better pain day. But mostly, we kiss boo-boos and wipe tears of the little ones in our lives so they don't have any pain. The conversation is worth your time! Share this!!! 

Listen to internet radio with Dana Morningstar on Blog Talk Radio
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Broadcast in Health

Monday, April 8, 2013

HAWMC Day 1 – Getting Started

HAWMC Day 1 – Getting Started

Welcome to our Third Annual Health Activist Writer’s Month Challenge!

My "Chronically Mommy" blog was my third blog in a series of three. I began writing about my spiritual journey in my first blog because when I became really sick, I became more spiritual and was searching for myself and my own path in this world. Then I began to write more about my experiences as a woman with chronic pain and awaiting my shoulder replacement surgery in my second blog. And in "Chronically Mommy", I became a mommy first and a woman with chronic pain and joint disease second. They go hand in hand however. I thought other mothers out there would like to know they are not alone. Also, we went through the adoption process, and it is a grueling process by itself, add the threatening shadows that seem to hover over the whole experience--chronic illness, disability and chronic pain--and you add additional stress, fear and concern that a birth mother will never choose you or that your "condition" will make it impossible to ever be matched with that one child that was meant to be yours.  It was an extremely long and exhausting process, but we have a child and are the family we always wanted to be!

Every year I have wanted to get involved in HAWMC, but something has always gotten in the way--a shoulder replacement, a new baby or just the time it takes to be a mommy for a child in general, and a hip replacement. So I am a newbie to HAWMC! I have met so many people online since I began "Chronically Mommy" and have learned many tricks of the trade--being mommy and chronic!

I have always had a diary and a journal. Blogging has become just another way to journal for me. I like it better though because people can respond and make comments. When you write in your own journal, you have no criticism. If I ask a question, I get answers--sometimes many, many answers. If I learn something new and want to pass it on, I can blog about it, and I have then educated and spread awareness. And nowadays, I can press one button and the blog post link goes to multiple sites at once, like Facebook, LinkedIn and Twitter so the information is even more widespread than when I first began!

I write about health topics as a Mommy because it is something that I know, that I experience and that I have the ability to share with others. I am an advocate. I am an activist. I want to share with the world what I know about being a Mom with chronic pain, disability, chronic illness, autoimmune arthritis, and other conditions. Even if someone reads my blog that doesn't have exactly the same diseases or conditions, I feel that I am able to reach anyone who shares a chronic illness, chronic pain or disabling condition. That is really the most important thing to me, to reach as many Chronic Mommies as I possibly can to help them to be, feel and live as well as possible!

    Friday, January 4, 2013

    Mick Is 2!--A Mother's Heart Is There Before She Is Even A Mother...

    My husband and I had been trying to adopt for 6 years. There were many things that made the journey long for us. We moved from state to state several times, which caused us to change adoption agencies many times. I had several surgeries which pushed the adoption back even more. I will not list any of the agencies, etc. that we used, but we also tried foster care to adopt. We took the 7 week long class for our county, and filled out all the paperwork, had our home study done with our fingerprints and everything. We were just waiting for a child or sibling group. We were open to any child--either gender, any race or ethnicity or religion, any age 0 up to 12 years and even sibling groups.

    When months went by without a phone call, I contacted our case manager. She said that they moved to a different office building and our paperwork was lost. We would have to start all over again if we wanted to continue with the foster to adopt. We were devastated!

    We finally found someone to work with and were matched with a birth mother out of New Jersey. We then did the entire adoption through an agency and attorney out of New Jersey. We were matched in October of 2010, when a birth mom and her mother picked us from our profile.

    My hubby was out of town when we received the call from our adoption coordinator. She said that the birth mom and her mother wanted to speak to us to make a definitive decision about choosing us to parent. I said that I really thought it was probably fine, but I needed to get in touch with my hubby first to make sure we were on the same page. It was so weird, but my hubby had flown to Philly and was driving about 70 miles from there for a conference. I was waiting to hear from him; he was driving in a noreaster! It took him hours to drive that 70 miles to his destination.

    I spoke with the birth mom and her mother for several hours. It seemed as though we already knew each other. I felt like when they were telling stories about their family that they must be Italian. It was just one of those feelings. I came to that conclusion from certain ways they said things, emphasis on saints, wanting us to teach the baby to pray the rosary, & naming the child after St. Michael.

    When Jim returned home the next day, he spoke with the birth mom only, and it went really well. We were told by our case manager that the birth family chose us unanimously! The birth mom had a few things she wanted us to do that would go above and beyond an adoption agreement, and we agreed to them all. She wanted his name to be Michael because she had a dream that God came to her and told her she was having a boy and would name him Michael. She wanted his middle name to be Robert after her father who passed away in his 50's. She wanted him to learn to pray the rosary. She wanted him to know who his birth family is and that they love him. All was doable. We added another middle name so that he has two. He is Michael Jameson Robert M. My hubby is James so he is son of James.

    I have written about all the wonderful religious coincidences, or perhaps they were religiously meant to be. I won't go into detail since I have done that before. Many dates coincide with Saints' feast days, I prayed to St. Anthony and have been receiving rosaries and prayer cards, etc from St. Anthony's Chapel in Boston. Mick was due on the Immaculate conception, which was 12/8/10, and our hotel room number was 128 when we went to New Jersey for his birth! We were matched on the feast of the patron saint of mothers and childbirth! There is so much more!!! During the entire pregnancy, I carried with me as well as placed under my pillow at night a small satin sack that I filled with Michael's first onesie which read, "Mommy Loves Me." It also contained prayers to St. Anthony, St. Michael, a healing stone, a miracles can happen stone, a St. Michael medal, a rosary, etc. It was all held together with a satin ribbon on top. I would pray that he would be full term, healthy, and that his birth mother would be OK with everything. I prayed that she had a healthy pregnancy. I would talk to God, the Saints, Mary, Jesus, the angels and my Spirit Guide. I would also talk to Michael. I already knew him. I bonded with him immediately. I spoke to him as though he were inside of me. In a way he was though. His birth mom carried him in her womb under her heart. I carried him in my heart above my womb. I had that little prayer bag with me all the time. I still do because I still pray for Mick & his birth family. I also am very gracious. What a magnificent gift! The gift of life! We were given the gift of this sweet little person. Nothing can beat that! So I now say prayers of thanksgiving as well.

    Mick's birth mother's family is Sicilian! My family that is Italian is Sicilian! His birth father's family is Irish! My family is also Irish! Mick looks so much like my family. Everyone tells me he looks just like me! I look more like Mick's birth mom's family than my biological family!

    Mick has seen his paternal grandmother, Nana, twice. The most recent visit was in April. He has seen his birth mom, G-Ma, great-G-Ma and Aunt Christina twice and Uncle Greg once, most recently was the last visit to NJ in 2011 when Mick was only 7 months. We were there for the adoption finalization.

    I am reminiscing because Mick turned 2 on 12/14/12. We are heading to NJ soon to see his birth mom, G-Ma, great-G-Ma, aunt Christina and uncle Greg. We want Mick to recognize them by their names and their faces. We feel it's important Mick knows he has a whole other family that loves him, thinks about him and prays for him.

    Two is such an interesting age. He is beginning to ask questions. I had to take him to my doctor appointment the other day. He picked up a pamphlet about cord blood donations. He asked about the baby in the belly. I began to tell him that he was once in mommy's belly, but I stopped myself. Instead I said that everyone starts out in a mommy's belly until they are born. This got me thinking even more...

    ...Mick needs to have a special name to call his birth mom. It's the right thing to do. After all, he has so many other names of endearment for other people he loves. For the birth grandmothers, he calls the maternal grandmother G-Ma, and the paternal grandmother Nana. He calls my mom G.G. and my dad Pops and Jim's mom GaGa. He calls his Godmommy LaLa. He calls me MomMom and Jim DadDad. He calls my friend Sam YaYa because we think he thought all my friends were named LaLa, and he couldn't pronounce the "L". LOL, or YOY!

    Mick received a birthday card from G-Ma, aunt Christina and his birth mom. It was signed: Love, Mommy, G-Ma and aunt Christina. I thought that would be really confusing for him. He doesn't call me mommy usually unless he is in bed and is trying to get my attention, "Mom, mom, mom, mommy, mommy, mommom, mommom, mom, mom, mommy..." However, when I am speaking to him and referring to myself, I call myself Mommy, "Mick, Mommy wants you to eat a couple bites of chicken and peas, and then you can play with your train." I did give him the card. It isn't confusing to him yet. He can't read who sent it to him right now. What I am worried about is getting to NJ and having his birth mother call herself mommy to Mick. He will likely call her out on it by saying that she is not his mommy and that I am. I would feel badly about that in a number of ways...

    First, I would feel badly that we don't have a name already in place for the woman that carried him in her womb for 9 months. Second, I would feel terrible that Mick would be put in a situation where he would feel uncomfortable. Third, I would not want her to have a name that is less important than mommy because she did carry him for 9 months and go through labor as well as give birth. Part of me wants her to pick the name, part of me wants to see what Mick calls her after we explain who she is, but mostly I think we should show Mick the pictures of the birth family again along with the names we are calling them and then see what he calls everyone himself. We would call them, aunt Christina, uncle Greg, G-Ma, great-G-Ma, and Tummy Mummy because she carried Mick in her tummy for 9 months before MomMom and DadDad picked him up at the hospital and took him home with us so he could have a mommy and a daddy to take care of him.

    He is such a smart, sweet good boy. We are all so blessed to have him in our lives. He loves to learn. He proudly says his alphabet, counts to 30+ in English, to 10 in Spanish, to 7 in Chinese, and to 5 in Korean. He knows sign language, ASL not the baby signing. He signs everything people say to him & what he says back so he really understands what he's signing and isn't just memorizing. The one thing he did that really got me as a mom and brought tears to my eyes wasn't his first word, first step or when he said mama. It was just on 12/21/12. This was the day many thought was their last day on earth. It was viewed very differently in our home. We believed that it was to be a day of change for the good of mankind and our planet. On that day, we were in a hotel in Nashville, TN (Opryland). Mick was in his PJs ready for bed. We already read a book, he brushed his teeth and he was about to get into bed. Just before, he began to recite the Our Father verbally and with ASL. It was the most amazing thing I have ever seen and heard at one time. Again, I will say, we are so blessed to have Mick in our lives. He knew the entire Our Father, word-for-word and all the signs as well!
    Michael was in my heart long before I ever looked at him, touched his soft baby skin, smelled his baby-fresh hair, or heard how loud his cries and his laughter could be. I felt him tugging at my heart already. I was his Mommy! I remember when we found out we were matched and knew that very night his name was to be Michael. From that day forward, he was Michael. It was Michael's room, his clothes, his bed and his toys. Michael was our little boy! Our baby boy. When I would pray at night, I would imagine what he looked like. I asked my Spirit Guide to send me something for me to see to picture him when I thought of him. We had never seen any pics of the birth parents so we had no idea what he could possibly look like even. I remember closing my eyes every night and seeing the most amazing eyes! They had every color in them, but were mostly green and brown, just like mine! The very first thing I noticed when Michael was born was when he opened those gigantic eyes of his with the super-long and dark eyelashes, they were the exact eyes I had been seeing every night as I drifted off to sleep. Hmmm...did my Spirit Guide send me a pic? Was Mick already bonding with me as well and was able to show me his eyes as I dreamed? I may never know, but the bond between a mother and a child is the strongest bond. If we were already matched in our blueprints, who's to really say what can and cannot happen or what can or cannot be true? I just know that I love him so much and always have that I often forget I didn't carry him for 9 months and give birth to him myself. Also, I have had 10 surgeries and 3 minor eye procedures. I could have easily popped out a kid or 2 during one of those joint replacement surgeries! Those were indeed awful surgeries. I believe anything could have happened and I would not have known, even labor and delivery. LOL!

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