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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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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

1 comment:

kate said...

As a sign of gratitude for how my son was saved from fibromyalgia , i decided to reach out to those still suffering from this.
My son suffered fibromyalgia in the year 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always complain of joint stiffness, and he always have difficulty falling asleep . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and they left the contact of this doctor who had the cure to fibromyalgia . I never imagined fibromyalgia has a natural cure not until i contacted him and he assured me my son will be fine. I got the herbal medication he recommended and my son used it and in one months time he was fully okay even up till this moment he is so full of life. fibromyalgia has a cure and it is a herbal cure contact the doctor for more info on on how to get the medication. Thanks for reading my testimony.

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