Living vs Surviving 

You know the question….. We’ve all asked it, and all thought carefully about how to answer. The question is nothing life altering to most and seems simple enough. But to many the answer is FAR from simple. Now you are probably wondering what question I might be speaking of. Well….. the common probably the most common and generic question asked, “How are you?”     To most that’s not a big question and gets a simple answer of “Okay,” or “Fine.” But how many of us with a chronic illness ever answer this truthfully? When was the last time you answered and said “I had a really horrible night l, my pain is at a 9, my head is pounding and I think I’m going to lose my breakfast and I’m barely surviving?”  Probably never! No one is ever that truthful and no one ever expects that kind of answer. What would you honestly do if someone you hardly knew all laid that on you? This leads me to my topic for this blog. The difference in living and surviving. And how truly different those two things are!! 

If you were to define living what would say? To me living is just that, being able to go about your “normal” life with little to no pain. Not really thinking about your illness because if is not effecting your daily life. You can come and go as you please and not have to think about your daily spoon use. You can go do the things you enjoy and the drop of a hat with no second thought. Or do nothing at all. But you have the decision because you feel GOOD!!

On the flip side surviving is just that. You are just getting by. You may be working and doing all the things that are required of you but that’s all you are doing. There are no extra events or fun activities because there is no energy. Even the activities that should be simple like showering or doing makeup are to strenuous and must be skipped to save energy for things later in the day. And when you are in survival mode you are definitely thinking about your spoon use! 

I asked some of the women in a support group that I help run about their definition of living vs surviving and this is what they had to say! 

One fellow Survivor said this “Living is being able to enjoy and do what you love. It is exploring, traveling, dropping everything and with no plan getting in the car and driving for the weekend and exploring back roads and meeting people. Surviving is figuring out if you can drive to your doctors appointment without killing others and not caring if you die. It is living on yogurt and eggo waffles because cooking is to hard. It is knowing the house or apartment is trashed but you can’t do anything about it because the friends and family have given up because there is no “getting better.” “

Another had this to say, “My husband always tells doctors that I am alive but is not living. I think you can substitute surviving for alive. What he means is I’m breathing, but I have no life beyond my bed. So to us, surviving is just getting through each day, while living is doing all this things I took for granted before I got sick…going out to eat, seeing a movie, going on vacation, watching my son play baseball. The list is endless.” 

Both of those are so true. They both do an excellent job of explaining what it means to live versus survive. And how different those two ways of life can be. Living is enjoying life and doing what you want when you want. While surviving is truly finding a way to make it through each task with the end goal of getting back to bed or the couch as quickly as possible. 

So what do you do to get through those times when you are just surviving? Those times when people ask how you are and you wish you could really be honest, but instead you just tell them you are doing fine! Here are a few simple tips to get through those times when you feel like you are just simply surviving. 

1. Do only the things that are essential! The bathrooms, the vacuuming and dusting can be put off for a few days until you are feeling better. The things like showering, dressing and general activities of daily living are more essential and those tasks should be focused on first. 

2. If you have someone available ask for help. If you have a spouse, kids or even coworkers (not always an option I know) who can take over some of the tasks that for you are too hard to do at this time. 

3. Rest, Rest, Rest!  Take any and every chance you can to rest. Even if you can only take a 15 min power nap to close your eyes and recenter yourself, use that time to so so. If you can schedule in a 2 hour nap then do that. Just rest. Whenever and however you can. 

4. Even during the good times make sure that you take time for you. Whether that’s something as simple as a nightly bath by yourself after the kids go to bed.  Or something a little more elaborate like a mani/pedi and a massage once a month. Whatever it is is FIND TIME FOR YOU!!  

5. Last bit definitely not LEAST. Find someone you can confide in. Someone who understands the daily struggles and will be there for you to lean on emotionally. Whether this is your spouse, your bestie, a counselor or someone you’ve never met but have connected to in an online support group. Whoever it may be, having someone to talk to will really help when you are struggling. 

So as you can see there is a definite difference in living versus surviving. This may not be something you’ve ever thought about if you don’t live with a chronic illness that causes you periods of poor health and exhaustion. But it’s a real thing. Yes, technically we are all living but you have to look at quality of life as well. That’s where the term surviving comes into play. At times when you are doing just that. Just simply making it through each day alive. Remember there are groups out there with others going through situations similar to yours and they will be not only great Resources but they can also be a place where great lifelong friendships can be made.  

Where Did All The Money Go????Bills Pills Bills Pills…..

By Amy Nora
It is the never-ending cycle of what many of those with Lupus and other Chronic health conditions struggle with. The financial struggles that people with SLE face can be a challenge on many levels. According to the Lupus Foundation of America, the average lupus patient spends approximately $12,000 annually on treatments; however, many treatments cost several thousand dollars a month or every few months. There is also the problem of loss of income due to the inability to work full time or the need to go on disability. The average total annual breakdown cost per Lupus patient in the United States is $20K.  

This is an extraordinary amount of money to the average person or family. There are ways to help soften the financial impact though. First, drug manufacturers offer assistance programs for patients that are not on Medicare, Medicaid, or Tricare. If you are on any of those three programs, it is illegal for them to assist. These programs offer help with the medications that have copay’s of several hundred to several thousand dollar copays. Second, are organizations that have grants or funding available to assist with various costs associated with various conditions or drugs that are not associated with drug manufacturers so they do not fall into the prohibitive statues under the law. The most heard of and known one is the Healthwell Foundation to those in the Lupus community. Third, if you can meet with a financial advisor to work on medical expense planning. This is now just as important as retirement planning for those with chronic medical conditions. This is not Health Savings Accounts, this is not a specific type of account, this is a strategy based off expenses and potential length of ability to work.  

There are honest and hard financial discussions that must be had if you have a medium to severe case of SLE. I would encourage you to plan wisely. When those expenses come that none of us can plan for, let us make sure we use what resources we can to lessen the impact as much as possible.  

We already have to deal with pills, let’s do what we can about those bills…

 

**********

http://www.resources.lupus.org/entry/facts-and-statistics

 

 

The Basics of Infertility! 

Infertility….. I am sure that you all know someone who has been affected or you have been affected by infertility. April 22 Through April 28, 2018 is Infertility Awareness Week.  To give you an idea of just how many are affected, here are some staggering statistics regarding infertility.

7.4 million women, or 11.9% of women, have ever received any infertility services in their lifetime. (2006-2010 National Survey of Family Growth, CDC)

1 in 8 couples (or 12% of married women) have trouble getting pregnant or sustaining a pregnancy. (2006-2010 National Survey of Family Growth, CDC)

Approximately one-third of infertility is attributed to the female partner, one-third attributed to the male partner and one-third is caused by a combination of problems in both partners or, is unexplained. (www.asrm.org)

A couple ages 29-33 with a normal functioning reproductive system has only a 20-25% chance of conceiving in any given month (National Women’s Health Resource Center). After six months of trying, 60% of couples will conceive without medical assistance. (Infertility As A Covered Benefit, William M. Mercer, 1997)

Approximately 44% of women with infertility have sought medical assistance. Of those who seek medical intervention, approximately 65% give birth. (Infertility As A Covered Benefit, William M. Mercer, 1997)

Approximately 85-90% of infertility cases are treated with drug therapy or surgical procedures. Fewer than 3% need advanced reproductive technologies like in vitro fertilization (IVF). (www.asrm.org)

The most recently available statistics indicate the live birth rate per fresh non-donor embryo transfer is 47.7% if the woman is under 35 years of age and 39.2% if the woman is age 35-37. (Society for Assisted Reproductive Technology, 2013)

According to the Women’s Health Organization, Infertility is “a disease of the reproductive system defined by the failure to achieve a clinical pregnancy after 12 months or more of regular unprotected sexual intercourse.”… (WHO-ICMART glossary1). It is also defined as the inability of a sexually active, non-contracepting couple to achieve pregnancy in one year. The male partner can be evaluated for infertility or subfertility using a variety of clinical interventions, and also from a laboratory evaluation of semen.” (Semen manual, 5th Edition3).

As seen in the definition of infertility it is just not something that affects women.  Men can also be affected by infertility. Male factor infertility is the primary cause in about 30% of all infertility cases. Male infertility is a factor in 30 – 50% percent of all couples who are trying to get pregnant a second time.

So now we know how frequently infertility occurs. Let’s look at possible causes for female infertility. According to the American Pregnanct Association, the most common causes of female infertility include problems with ovulation, damage to fallopian tubes or uterus, or problems with the cervix. Age can also contribute to infertility because as a woman ages, her fertility will naturally decrease.

Problems with ovulation may be caused by one or more of the following: hormone imbalance, a tumor or cyst on the reproductive organs, alcohol or drug use, and problems with the thyroid gland excess weight, excess stress, any exercise that causes a significant loss of body fat, brief menstrual cycles.

Damage to the fallopian tubes or the uterus can be caused by any of the following: pelvic inflammatory disease, polyps in the uterus, endometriosis or fibroids, scar tissue or adhesions any kind of chronic medical illness, previous ectopic (tubal) pregnancy, birth defect. Also DES syndrome (The medication DES, given to women to prevent miscarriage or premature birth can result in fertility problems for their children.)

Male fertility is a complex process, not that women’s isnt, but male infertility can oftentimes be hard to diagnose or even overlooked. In order for a man to get his partner pregnant, certain things must occur: first off, healthy sperm must be produced. This involves the growth and formation of the male reproductive organs during puberty. If there is something that affects growth of the male reproductive organs it can affect future fertility. At least one of a mans testicles must be functioning correctly, and they must produce testosterone and other sex hormones in order to trigger and maintain sperm production.

That being said there has to be enough sperm in the semen. If the sperm count is low, it decreases the chances that one of the mans sperm will fertilize his partner’s egg. A low sperm count is considered to be fewer than 15 million sperm per milliliter of semen or fewer than 39 million per ejaculate.  In order for a mans sperm to be able to fertilize a womens egg he must not only have an appropriate sperm count he must also have functional sperm that are able to move. If the movement (motility) or function of the sperm is abnormal, the sperm may not be able to reach or penetrate your partner’s egg.

Male infertility generally is caused by completely different things than women’s infertility. Let’s take a look.
There are a variety of health issues and medical treatments that can cause male infertility.  Some of these include: infertility can be caused by a Varicocele which is a swelling of the veins that drain the testicle. Varicocele is the most common reversible cause of male infertility. Varicoceles can cause infertility because it reduces the quality of the sperm.

Some infections may interfere with sperm production or general sperm health. An infection can also cause scarring that can block the passage of sperm. These possible kinda of infection include: inflammation of the epididymis (epididymitis) or testicles (orchitis) and possibly some sexually transmitted infections, including gonorrhea or HIV.

Ejaculation issues can also cause male infertility. One issues could be retrograde ejaculation, which occurs when semen enters the bladder during orgasm instead of emerging out of the penis. There are many health conditions that can potentially cause retrograde ejaculation, including diabetes, spinal injuries, medications, and surgery of the bladder, prostate or urethra.

Another cause could be Antibodies that attack sperm. Anti-sperm antibodies are immune system cells that identify sperm as harmful invaders and attempt to eliminate them.

In some men, during fetal development one or both testicles will fail to descend from the abdomen into the scrotum. Decreased fertility is more likely in men who had this condition.

Infertility can result from disorders of the testicles themselves or an abnormality affecting the hormonal systems including the hypothalamus, pituitary, thyroid and adrenal glands. Low testosterone (male hypogonadism) and other hormonal problems have a number of possible underlying causes.

Blockages can occur at any level of the male reproductive system, including within the testicle, in the tubes that drain the testicle, in the epididymis, in the vas deferens, near the ejaculatory ducts or in the urethra. And each of these blockages can cause some level of male infertility

A number of inherited disorders and chromosome abnormalities such as Klinefelter’s syndrome cause abnormal development of the male reproductive organs, thus infertility. Other genetic syndromes associated with infertility include cystic fibrosis, Kallmann’s syndrome and Kartagener’s syndrome.
Certain medications that can cause infertility and decrease sperm production, such as testosterone replacement therapy, long-term anabolic steroid use, cancer medications (chemotherapy), certain antifungal meds and some ulcer drugs.

Believe it or not there are also environmental causes for male infertility. Some of these environment causes are: Overexposure to certain environmental elements such as heat, toxins and chemicals can reduce sperm production or sperm function.  Extended exposure to benzenes, toluene, xylene, pesticides, herbicides, organic solvents, painting materials and lead may contribute to low sperm counts. As well as heavy metal exposure. A mans  Exposure to lead or other heavy metals also may cause infertility.  Long periods of elevated temperatures can impair sperm production and function. Frequent use of saunas or hot tubs may temporarily impair sperm count.

There are many options for treating male infertility. For example, a varicocele or obstructed vas deferenscan often be surgically corrected or an  repaired. Prior vasectomies can potentially be reversed. In cases where no sperm is found in the ejaculate, sperm can often be retrieved directly from the testicles or epididymis using sperm retrieval techniques. Antibiotic treatment might cure an infection of the reproductive tract, but doesn’t always restore fertility. Hormone treatments/replacement can be used in cases where infertility is caused by high or low levels of certain hormones or problems with the way the body uses the hormones. ART treatments which involve obtaining sperm through normal ejaculation, surgical extraction or from donor individuals.  The sperm are then inserted into the female genital tract, or used to perform in vitro fertilization or intracytoplasmic sperm injection.

As for female infertility treatment is going to vary depending on what the cause of the the infertility is. Many treatments significantly improve the chances of getting pregnant. Treatment options include hormone treatments, fertility drugs, and surgery. In addition, assisted reproduction uses various medical techniques to fertilize an egg.

If the couple wants to try to handle things on their own, naturally they can tryplanning intercourse within 5 days of ovulation to improve
The chances of becoming pregnant.

If they okay with medication there are several options. One options is called an
Estrogen modulator, this mimics the effect of estrogen on various tissues, including
the breast, bones, and reproductive organs. Examples: Clomiphene (Clomid and Serophene)
Another medication option is a certain category of Anti-Diabetic medication. This kind of medication will control the amount of sugar (glucose) in the blood. Examples are Metformin (Glumetza, Glucophage, Riomet, and Fortamet). They can also try a women on Hormone therapy, which affects the body processes by regulating the activity of the organs. Examples are: Estradiol (Estrace, Estring, Vagifem, Delestrogen, EstroGel, Alora, Evamist, Elestrin, Estrasorb, Femring, Innofem, Vivelle, Menostar, Estraderm, Divigel, and Climara)
Gonadotropin-Releasing hormone analogue
Testosterone (Axiron, Androgel, Delatestryl, Testim, Testopel, Fortesta, Striant, Natesto, Vogelxo, Aveed, Depo-Testosterone, and Androderm)
Progesterone (Prometrium, Crinone, Endometrin, and Prochieve). There are also Sex hormone suppressors which stop or slows the production of hormones involved in sexual health. Examples: Leuprolide (Lupron and Eligard)

There are also medical procedures that can be atttemped. One of these is Artificial insemination which is insertion of sperm directly into a woman’s womb so she
can get pregnant. Other medical procedures that help women become pregnant can be options as well. Examples include artificial insemination (AI) and in vitro fertilization (IVF).
Ovulation induction: Using medication to make the ovaries release eggs (ovulation).

Even though this is a long post I hope I have provided you with some information on infertility of both kinds. I know I learned a lot while doing the research for this post!!

With Love,

Amber

http://www.resolve.org/about/fast-facts-about-fertility.html

http://www.who.int/reproductivehealth/topics/infertility/definitions/en/

https://www.gstatic.com/healthricherkp/pdf/infertility.pdf

http://www.mayoclinic.org/diseases-conditions/male-infertility/basics/causes/con-20033113

What is Sjogrens?

Sjogrens…… How many of you know what that word means or is? According to Mayo Clinic, Sjogren’s (SHOW-grins) syndrome is a disorder of the immune system which is identified the two most common symptoms: dry eyes and a dry mouth. Sjogren’s syndrome is often found in those with other immune system disorders, such as rheumatoid arthritis and lupus. In this blog post we will look at what Sjogrens is, how many are affected, the symptoms and how it is treated. April is Sjogrens awareness month so that’s what I want to do. Bring awareness to this condition  

Although you can develop Sjogren’s syndrome at any age, most people are older than 40 at the time of diagnosis. The condition is much more common in women. Treatment focuses on relieving symptoms. It has been estimated that approximately 1 in 272 people will be diagnosed with Sjogrens. That’s abou 1 million people in USA. Researches few that there are an estimated 2 million people that have Sjogrens and are undiagnosed.  Son experts believe that 1 to 4 million people have the disease worldwide. 

In a person who has Sjogrens syndrome, their mucous membranes and moisture-secreting glands of the eyes and mouth are usually affected first. Reaulting in decreased production of tears and saliva. This leading to dry eyes and mouth. Sjögren’s also can affect other parts of the body. Including the skin, joints, lungs, kidneys, blood vessels, digestive organs, and nerves. Symptoms other than dry eyes and mouth can be: dry skin, skin rashes, a chronic dry cough, problems with the thyroid, joint and muscle pain, Vaginal dryness, as well as numbness/tingling in the arms and legs.

At this point the exact cause of Sjögren’s syndrome is unknown. However it is thought by many that it may be caused by a combination of two things: genetic predisposition, or exposure to something like a virus or bacteria.

How is Sjogrens diagnosed? There are several different ways that this condition can be diagnosed. Your doctor may order blood tests to check for: they are looking for levels of different types of blood cells. Along with The presence of antibodies common in Sjögren’s syndrome. They are also looking for presence of inflammatory conditions or any indication of problems with the liver or kidneys in the blood. The dr may also order eye tests to measure the dryness of the eyes. They also may ordering some imaging to look at the functions of the patients salivary glands. Or maybe a lip biopsy to look for the presence of clusters of inflammatory cells, which would indicate Sjogren’s syndrome. 

Now that we have looked at the cause, the symptoms and how the condition is diagnosed. Let’s look at how the condition can be treated. Treatment for this conditions is based almost primarily on symptoms. There are several different medications that can be prescribed to treat Sjogrens. 

The dr may want you to try something that will help increase your production of saliva. Drugs such as pilocarpine (Salagen) and cevimeline (Evoxac) can increase the production of saliva, and sometimes tears. S

Othe medications that could be given  toaddress a specific complications that you might develop. If you develop arthritis type symptoms, they might suggest nonsteroidal anti-inflammatory drugs (NSAIDs) or other arthritis medications. Prescription eyedrops can be given if you don’t respond to over-the-counter drops. Should you develop a Yeast infection in your mouth, they can be treated with antifungal medications.

Due to the fact that Sjogrens is categorized with other autoimmune conditions. Your dr might decide to treat your symptoms with Hydroxychloroquine (Plaquenil), a drug designed to treat malaria, is often helpful in treating Sjogren’s syndrome. Also, any drugs that suppress the immune system, such as methotrexate might also be given. 

Help me bring awareness by sharing this blog post with others. So that one day there can be a cure found!

-Amber
http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275

http://www.rightdiagnosis.com/s/sjogrens_syndrome/stats.htm

https://www.niams.nih.gov/health_info/sjogrens_syndrome/sjogrens_syndrome_ff.asp

Cyclic Vomiting Syndrome 

When you hear CVS what do you think? If you are like most you probably think of the big box pharmacy. And you wouldn’t be alone in this. That’s what most would think. However, if you have CVS or know someone who suffers from it, that is not the first thing that comes to mind. You would probably think of Cyclic Vomiting Syndrome. What is that you ask!? We will discuss that in today’s post. We will look at what CVS is, what the symptoms are, what the treatment is.  And we will get the perspective of a CVS patient. Let’s not waste anymore time. Let’s just jump right in. 

According to the National Institute of Health, Cyclic vomiting syndrome, sometimes referred to as CVS, is an increasingly recognized disorder with sudden, repeated attacks—also called episodes—of severe nausea, vomiting, and physical exhaustion that occur with no apparent cause. The episodes can last from a few hours to several days.  Wow that sounds great right?  No, okay you are right. It’s miserable. Absolutely 100% miserable for those who suffer from it. Many who suffer from this struggle to find triggers. Meaning they can’t pinpoint what causes it so the can reduce the number of attacks they have. So they will vomit everything they try to consume for hours or days. It’s the a stomach bug on steroids. It often hits fast and without much warning and depending on the attack like said above can last for hour, days or even longer.  This may cause the person to have to stay in bed and miss work or school for long periods. And the person suffering may even have to seek medical treatment for IV fluids or other methods of treatment. Which we will discuss later. 

How many people suffer from CVS? The exact number is unknown. But according to the NIH it is estimated that it could affect 4 to 2,000 per 100,000 children. The condition is diagnosed most often in children, although there have been some recent studies that suggest that the condition may begin in adulthood as commonly as it begins in childhood. 

So what causes Cyclic Vomiting Syndrome? Sadly, the exact cause of CVS is unknown. But experts believe there are some things that can contribute to the disease.  Some of these conditions as listed by the NIH are as follows: gastrointestinal motility which is the way food moves through the digestive system. Or moves at a slow pace through the digestive system. A persons central nervous system function, which includes the brain, spinal cord, and nerves that control bodily responses.  A persons autonomic nervous system function, which is the nerves that control internal organs such as the heart. Or the person may have hormone imbalances. It is also thought that it’s possible that an abnormal inherited gene may also contribute to the condition.  

There are also triggers that can cause an attack of CVS.  Here are just a few: emotional stress, anxiety, or panic attacks, infections, eating certain foods, like chocolate, cheese, or additives such as caffeine, nitrites which are commonly found in cured meats such as hot dogs, and MSG. Other triggers could include: hot weather, menstrual periods, motion sickness, overeating, fasting, or eating right before bedtime or physical exhaustion or too much exercise. So basically, after looking at the list of triggers, it’s possibk that just about anything can trigger an attack. 

What are the symptoms of CVS? The most common symptoms are severe vomiting that occurs several times per hour and lasts less than one week. And also three or more separate episodes of vomiting with no apparent cause in the past year.  A person with CVS may also experience abdominal pain, diarrhea, fever, dizziness, and even sensitivity to light. These symptoms may lead to dehydration which can be a life threatening condition. 

So now we know what CVS looks like and what causes it. But the more important question is what can be done to treat a person who is experiencing a CVS attack or flare. There is sadly no cure at this time. So treatment is more symptom management.  A person with CVS may be given anti-nausea meds, sedatives, medicines that suppress stomach acid, or antidepressants.  A person may be given meds that are used to treat migraines. Those meds can be helpful in treating or preventing a CVS attack. 

When I spoke with Melissa Kline, a CVS patient she gave me some insight into what it’s like to live with this condition. She stated that she has been able to learn what  her triggers are.  For her Benlysta (which she receives as treatment for her lupus!) and stress are the big two things that will almost always trigger an attack. She states that some patients can catch their episodes early with anti nausea meds, while others end up in the ER to be given enough medication to mildly sedate them. She said that sedating a cvs patient is kind of like a reset button. By hitting that “reset button” they can slow or stop the symptoms, and give the patient a break. Many times she and other CVS patients end up in the ER due to dehydration. So they are treated with IV Fluids and meds to control the nausea so they are able to stop vomiting. Cyclic Vomiting Syndrome is a horrible and challenging disorder and no one should have to deal with it. She is hoping that they are able to find better treatments and a cure in the coming years as more awareness is brought to the condition. She also suggested that anyone who has the condition or thinks they might visit cvsaonline.org. 

So help us bring awareness by sharing this article after you read it. 

-Amber

http://www.mayoclinic.org/diseases-conditions/cyclic-vomiting-syndrome/basics/symptoms/con-20028160

https://www.niddk.nih.gov/health-information/digestive-diseases/cyclic-vomiting-syndrome

http://cvsaonline.org/

Autism Awareness 

April is Autism awareness month.  But what exactly is Autism?  Autism is defined as a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts. Autism can affect any race, color or ethnicity. According to Autism Speaks, this condition is found in     1 in 68 children, even further broken down 1 in 42 boys and 1 in 189 girls are diagnosed with an autism spectrum disorder (ASD). That being said I guarantee that each of you reading this knows someone who is on the spectrum or who’s child is on the spectrum.  Sadly, there is no cure at this time, so it will be a lifelong journey for the kiddo and their parents. 

What kind of signs or symptoms should one watch for in their child when considering that they may have Autism or something on the spectrum? Children (or adults) who have this  condition may show inappropriate social interaction, have poor eye contact. They may have trouble with compulsion or impulsive behaviors. You might notice them doing repetitive movements, causing self-harm, or speak with repetition.  Children especially may show a delay in speech and or learning.  Those affected may show intense interest in a limited number of things or have problem paying attention. They are also often unaware of others’ emotions or depression. Those affected may also have severe anxiety, sensitivity to sound, or show a tic. 

There are so many signs and symptoms how would you ever know how much is just a child being a child or that they may have a problem of some kind? According to the CDC, diagnosing an autism spectrum disorder (ASD) can be difficult, since there is no medical test, like a blood test, to diagnose the disorders. Doctors have to  look at the child’s behavior and development to make a diagnosis. ASD can sometimes be detected at 18 months or younger.  This can be troubling for many parents as they just want a diagnosis for their kiddo. But like said above there is no quick way to diagnose a spectrum disorder.   That being said Autism Speaks has published a study that evaluated social and communication development in autism spectrum disorders (ASD) from 14 to 36 months of age. And it revealed that approximately half of all children with autism can be diagnosed around the first birthday.

Okay so now the child has been diagnosed but what can be done to treat the condition? Treating the condition can often times be as hard as diagnosing it. There are MANY options for treatment. And some of them may not work for your child. Many of the available options will be tailored to the specific child (person) and their own set of signs and symptoms. Treatment consists of many different kinds of therapy. 

Early recognition, as well as behavioral, educational, and family therapies may reduce symptoms and support development and learning. Therapy is going to be one of the most commonly used types of treatment. But it’s not just the therapy that most people think of where the child would go sit in a psychiatrist or psychologist office. It’s is more specific and intense. Below are options for different kinds of therapy. Each of which has its own significant benefit. 

Anger management which works to helps the child to learn to practice mindfulness, learn coping mechanisms, and how the can avoid triggers to minimize destructive emotional outbursts.

Family therapy would consist of psychological counseling that helps the entire family learn how to resolve conflicts, and communicate more effectively with one another. 

Applied behavior analysis. This is a teaching method that helps autistic children learn socially significant skills by encouraging positive behavior.

Behavior therapy is a therapy that focuses  on modifying harmful behaviors associated with psychological distress.

Sensory processing is a MAJOR problem for many oh whom are on the spectrum. This kind of therapy works on the way the nervous system receives messages from the senses and helps to turn them into appropriate motor and behavioral responses.

Some children respond well to Animal-Assisted therapy, while other won’t find it helpful at all. This kind of therapy uses animals to enhance the physical, emotional, as well as social well-being of humans. 

Other options may be physical therapy, speech therapy and occupational therapy.  Speech therapy will work on voice rehabilitation.  Occupational therapy will work to Improves daily living and work skills of patients.

Another treatment modality is Medications. This is often not the first method of treatment tried because of the often times young age of the child. But is available if needed.  Medications are oftentimes seen used more in older children, teens and adults, due to their side effects. The options for treatment by medication are listed down below. 

Antipsychotic this is a classification of medications that reduce or improves the symptoms of certain psychiatric conditions.

In order to treat these children (and older kids and adults) there is going to be a treatment TEAM approach. The child will be doing some, a few or maybe even all of the kind of therapies listed above. They will often times also have a neurologist who treats the nervous system part of the condition. A clinical psychologist who the mental disorders primarily with talk therapy. (This is only usually an option obviously for older kiddos, teens and adults). They may also see a Psychiatrist who treats mental disorders primarily with medications like the ones we discussed above. The littler kiddos will have Pediatrician who provides medical care for infants, children, and teenagers. And as they get older they will have a Primary care provider (PCP) who works on Prevention,  diagnoses, and treats diseases.

This like many others is a condition that affects not just the child on the spectrum but all the members of the family, especially the parent(s). It is recommended sometimes that the whole family see a therapist to help them deal with their issues regarding the condition.  And as with many other conditions, it is recommended that the parents find some kind of support group. Whether it be friends who have children who are also on the spectrum or actual support groups. Those can be found in a lot of major cities if the parent would like to physically attend a meeting. Or online if there are not options in their area. 

I spoke with a Mom (Kyndel) who’s a mom of three and her first son and oldest is on the spectrum. I asked her what things she thinks are most important for someone who knows little to know about autism and what moms starting the journey should know!! And here is what she had to say.  Here is her advice to others dealing with a child on the spectrum. Not all doctors you find are going to be helpful after diagnosis. You may have to find new doctors through a system of train an error. She also stated that it’s important to remember that there are several types of speech therapy and what works for one person may not work for the next. She said to remember that most childrens therapy will  likely include speech, occupational and physical therapy.  And the one thing she really stressed is that early intervention can make a big difference. The earlier you suspect something may not be quite right with your child take them in to the pediatrician and express your concerns. She also stressed that the spectrum is large, each person is not created the same. You met one person on the spectrum doesn’t mean you know them all. She also wanted to point out that getting a diagnosis of a child can cause conflict in marriages. There is usually one parent who is in denial and it’s rough. But as long as you work together and keep God first your marriage can make it through the hard times.  I also asked Kyndle how she made sure that her younger children didn’t feel left out or like her son on the spectrum got more attention. She said “I can only speek for us, but with 3 kids they all have to follow the same “rules”. We dont give Kamerin special treatment. Sense doing this he knows from routine what is “expexted” of him. Such as cleaning up his plate after meal time, picking up his clothes, knowing where his shoes belong. Simple stuff. Doing this for all 3 I believe is showing the other children that Kamerin is just another child, different in some ways but not less than them or vise versa.”

I hope this blog gives you a little more understand on Autsim and other conditions on the spectrum.  And would now know what to watch for in your kiddos. As always I lost my resources below so feel free to check those out. And email me if you have any questions 

-Amber
Resources:
https://www.autismspeaks.org/news/news-item/study-children-can-be-diagnosed-autism-age-one

https://www.autismspeaks.org/science/science-news/new-government-survey-pegs-autism-prevalence-1-45

https://www.gstatic.com/healthricherkp/pdf/autism.pdf

https://www.cdc.gov/ncbddd/autism/screening.html

The Truth About Endometriosis 

Endometriosis a condition that only affects women and can change their lives forever. Why am I discussing this you ask? Well, along with other conditions I have talked about this month, March is Endometriosis awareness month.  A lot of people have heard of the condition but don’t really know what it’s all about. Or how if affects a women’s life. So today I dove into some research about Endometriosis (Endo) so I could share with you.

What is Endometriosis? According to the Endometriosis Association, Endometriosis is a painful, chronic condition that affects at least 6.3 million women and girls in the U.S., 1 million in Canada, and millions more around the world. It occurs when the tissue that which lines the uterus (tissue called the endometrium) is found outside the uterus. It can be found in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity. Endometrial growths may include the bladder, bowel, vagina, cervix, vulva, and in abdominal surgical scars.

The Endometriosis Association says that “the misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: each month the tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body through the vagina, but the blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation — and can cause pain, infertility, scar tissue formation, adhesions, and bowel problems.”

What causes Endometriosis?

According to Endometriosis.org “There is no known cause of endometriosis but it is highly likely that certain genes predispose women to develop the disease [6]. Thus, women have a higher risk of developing endometriosis if their mother and/or sister(s) are also affected [7]. It is possible that age when the menstrual period starts, other gynaecologic factors, and environmental exposures influence whether a woman is affected. Whereas evidence has been weak with regards to exposure to dioxin (an environmental pollutant) [8] some evidence now supports exacerbation of its symptoms due to PCBs.”

What are the symptoms of Endometriosis?  

-Pain before or during periods

-Pain with sex

-Infertility

-Fatigue

-Painful urination during periodsds

-And possibly diarrhea, constipation, nausea.

Who is affected by Endometriosis?

It is estimated that’s endometriosis affects nearly 1 in 10 women during their reproductive years (ie. usually between the ages of 15 to 49). However, endo could start as early as a girl’s first period, any may not resolved by menopause, especially if the woman has scar tissue or adhesions from the disease and/or surgery.

How is Endometriosis diagnosed?

Diagnosis of Endo is tricky, because it will not show up on any CT Scan, X-Ray, MRI or Ultrasound. Other than being diagnosed by the symptoms, which is hard to do because the symptoms on Endo could also be the symptoms of many other things. The only really way to diagnose Endo is surgery. This is done laparoscopically. They go in and take a look around and if Endometriosis is found they can take care of those spots while they are in there.

How is Endometriosis treated and is there a cure?

At this time there is no known cure  for Endo. However,  endometriosis can be treated effectively with drugs. That being said most treatments are not suitable for long-term use due to side-effects.  Surgery can be an effective treatment, as they remove endometriosis lesions and scar tissue, but success rates depend on the how extensive the disease is and the surgeon’s skills.  Some say pregnancy is a cure because pregnancy may relieve symptoms,  but in the long term this is not a cure for the disease. Hysterectomy, with removal of all the disease at the same time, may relieve symptoms, but had not proven to be a cure  either. Removal of the ovaries when they do the hysterectomy increases the chances of pain relief but also causes the patient to go into immediate menopause.

It has been thought at times that Endo is an autoimmune disorder, however this has not be proven at this time.

-Amber

http://endometriosis.org/resources/articles/facts-about-endometriosis/

http://www.endometriosisassn.org/endo.html

The Real Story- Depression and Suicide

Suicide and depression are topics that no one wants to talk about. But they real. And it’s something we need to spread awareness about.  As well as spread awareness on how people can get help when they feel like suicide is their only option.  According to the CDC there were nearly 43,000 suicides  in the US in 2014 and nearly 1.3 million suicide attempts. That averages out to avoid 113 suicides each day or one every 13 minutes!  That same year suicide was the 10th leading cause of death.  That number is very shocking! 

Depression, which is often times a contributing condition to suicide affects a large part of the population. According to the Anxiety and Depression Association of America there are about 15 million adults affected by depression in 2016. That 15million is about 6.7 percent of the population of those over 18 years of age. That is a HUGE number. Think of all the people you know, now think about how many of those people have admitted they do or have suffered from depression.  I would take a guess that you can’t think of more than a handful who have actually admitted it.  While looking at statistic it’s found that people who suffer from a chronic illness has a much high orevelance for depression than the average person.  The question is why is such a huge problem something that so few will talk about!??

Patients with chronic medical illnesses have been found to have two- to threefold higher rates of major depression compared with age- and gender-matched primary care patients.Rates of depression in primary care patients are between 5% and 10 %,8 whereas prevalence rates of depression in patients with diabetes and coronary heart disease (CHD) have been estimated to be 12% to 18% and 15% to 23% respectively. (8)

People who suffer from depression may be seen as funny, outgoing, kind, cheerful and sweet on the outside. But on the inside they are filled with turmoil. They are oftentimes sad, and anxious and the last thing they want to do is be around people. As long as they can they will put on a brave face and pretend like nothing is wrong! Why? Because depression is often seen as taboo. Or as someone just whining and wanting attention.  And many times the person suffering from depression doesn’t talk about it because they don’t feel like they would like the response they would get from others. Or they just simply don’t realize that they are depressed (or as severely depressed as they are!)  Most people have no idea just how serious depression can be. Nor do they realize the problems depression can cause. 
Depression doesn’t always look like it is portrayed in the movies. People don’t just lay in bed for days and not shower. Depression can appear in many different ways.  Acording to the Mayo Clinic Website the following issues can all signs of depression. 

-Mood: anxiety, apathy, general discontent, guilt, hopelessness, loss of interest, loss of interest or pleasure in activities, mood swings, or sadness

-Sleep: early awakening, excess sleepiness, insomnia, or restless sleep

-Whole body: excessive hunger, fatigue, loss of appetite, or restlessness

-Behavioral: agitation, excessive crying, irritability, or social isolation

-Cognitive: lack of concentration, slowness in activity, or thoughts of suicide

-Weight: weight gain or weight loss

-Also common: poor appetite or repeatedly going over thoughts

So by looking at this list it’s clear that depression has many faces.  Now that we know what depression could look like, let’s take a look at what can happen as a result of untreated or poorly treated depression. Untreated depression can lead to many issues like problems at work, relationship issues, and it can slow down the recovery time for illness. Depression can also increase the chance of risky behaviors like alcohol &/or drug addiction.  A study was recently done with those who have clinical depression who also have had a stroke or have heart disease. They found that the patients with depression had a harder time following physicians orders and coping with their illness. They are had a more difficult time making healthcare decisions. Another study showed that those who are depressed have a much higher risk of dying in the first few months after having a heart attack.  

Do men and women react differently to untreated depression?  Yes, men often times will exhibit fear, anger and violent behavior more often then women. In addition a depressed male may make more bad decisions and participate more in reckless and dangerous activity like reckless driving or unprotected sexual activity. 

How do you treat depression? What are the options?  Well, there are a lot of options for treatment. One of the biggest, other than medications, is therapy. It is thought that is the client can sit and talk to someone who isn’t invested, like family or friends, it will be highly beneficial. As they are able to get their feelings out and talk about things they wouldn’t want to, or feel comfortable talking to their friends and family with. Options for therapy include: Cognitive behavioral therapy, Behavior therapy, and Psychotherapy. Another option for treatment is medications that fall intothe following categories: SSRI which eases the symptoms of depressed mood and anxiety. (Zoloft or lexapro). Antidepressants which prevents or relieves depression and elevates moods. (Wellbutrin or Effexor). Anxiolytic which can Relieve anxiety and tension. May promote sleep. (Buspirone). And lastly Antipsychotic which Reduces or improves the symptoms of certain psychiatric conditions. (Abilify) 

According to Web MD nearly 90% of all who commit suicide have a history of clinical depression or some kind of mental health issues. Many times those who die by suicide also have some sort of addiction, like alcohol or drug addictions. Depression is a risk factor for suicide along with the list below. 

RISK FACTORS FOR SUICIDE:

-One or more prior suicide attempts

-Family history of mental disorder or substance abuse

-Family history of suicide

-Family violence

-Physical or sexual abuse

-Keeping firearms in the home

-Chronic physical illness, including chronic pain

-Incarceration

-Exposure to the suicidal behavior of others

Those are risk factors that can lead to suicide. Now here are warning signs to watch for in someone you think is very depressed and possibly suicidal. 

WARNING SIGNS:

-Always talking or thinking about death

-Clinical depression — deep sadness, loss of interest, trouble sleeping and eating — that gets worse

-Having a “death wish,” tempting fate by taking risks that could lead to death, such as driving fast or running red lights

-Losing interest in things one used to care about

-Making comments about being hopeless, helpless, or worthless

-Putting affairs in order, tying up loose ends, changing a will

-Saying things like “it would be better if I wasn’t here” or “I want out”

-Sudden, unexpected switch from being very sad to being very calm or appearing to be happy

-Talking about suicide or killing one’s self

-Visiting or calling people to say goodbye

-Be especially concerned if a person is exhibiting any of these warning signs and has attempted suicide in the past. According to the American Foundation for Suicide Prevention, between 20% and 50% of people who commit suicide have had a previous attempt.

So now we know what depression may look like or present itself. And that depression along with other issues are a risk factor for suicide, We have also looked at warning signs to watch for in someone who is depressed or possibly suicidal. But how we can we help prevent suicide? 

First and foremost if you have a person in your life that is talking about suicide ALWAYS TAKE THEM SERIOUSLY!!! If you can sit down and talk with the person face to face. Find out if they have an actual plan. But don’t argue with them about their plan or about suicide in general. Talk with them and make sure that they know you care about them and that you are listening. You should ALWAYS AVOID statements like “Oh you have so much to live for!” Try to find out if the person has ever received mental health care and if they are currently being treated by a mental professional. And if the person has a real plan and you know that they will most likely implement that plan do your best to get them help as quickly as possible.  

Where can I get help for a suicidal friend or family member?  Locally you can always take them to the nearest ER. Or if you don’t feel comfortable transporting or they will not allow you to, you can always call your local law enforcement.  They have been trained and know how to talk to and deal with a suicidal person.  You can also call the suicide help line Call 800-SUICIDE (800-784-2433) or 800-273-TALK (800-273-8255) or the deaf hotline at 800-799-4889.  You can call these number anytime day or night. There will always be someone on the other end to help you. 

Depression is a serious condition and should not be looked at or treated lightly. Like noted above 90% of all the people who commit suicide have depression or some kind of mental illness.  In this post you were provided with the signs and symptoms of depression, risk factors for suicide and behaviors to watch for that often will precede suicide. If you have any questions or concerns alway contact your primary health provide or a mental health provider. And remember to never blow off someone who is talking about committing suicide because they may actually take those actions.  

-Amber 

Resources:
1. https://www.adaa.org/about-adaa/press-room/facts-statistics
2. http://m.huffpost.com/us/entry/5672782

3.http://www.dazeddigital.com/artsandculture/article/29569/1/the-real-reasons-we-are-silent-about-depression

4.https://www.gstatic.com/healthricherkp/pdf/major_depression.pdf

5.http://www.webmd.com/depression/guide/untreated-depression-effects

6.http://www.webmd.com/depression/guide/depression-recognizing-signs-of-suicide

7.https://www.cdc.gov/violenceprevention/pdf/suicide-datasheet-a.pdf

8.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181964/

World Down Syndrome Day

Today is Worldwide Down Syndrome Day. Why you are ask am I writing about this. Well, simply because everyone has probably known at least one person or one family that has been affected by Down syndrome. And we need to spread awareness. According to research there are approximately 200,000 cases in the US alone every year. And is something that can happen with any delivery. Down Syndrome is caused by the baby having an extra or copy of the 21st chromosome. Everyone has 23 pairs of chromosome. And for whatever reason a person with Down’s will have an extra copy of the 21st. That extra chromosome then causes alterations in the baby’s development. Those alterations cause the changes we most likely expect in someone with Downs.  
A person with Down’s usually has low muscle tone, a small stature, an upward slant of the eyes, and a single deep crease across the palm of the hand. These are the most common characteristics of people with Down’s. Each person with the Syndrome may have a variation of each of these characteristics or none of them at all. It has been said that nearly one in every 700 babies in the US will be born with Down Syndrome. That number makes it the most common chromosomal condition. 
There are three types of Down Syndrome. 
1. Trisomy 21 (nondisjunction). Down syndrome is usually caused by an error in cell division called “nondisjunction.”  Nondisjunction results in the embryo having three copies of chromosome 21, rather than the usual two.  Prior to or during conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate.  As the baby develops, the extra chromosome is replicated in every cell of the body.  This type of Down syndrome,in most common and accounts for 95% of cases. 

2. Mosaicism (or mosaic Down syndrome) is diagnosed when there is a mixture of two types of cells. some of the cell will contain the normal 46 chromosomes and some will contain 47.  Those cells with 47 chromosomes have that extra chromosome 21. Mosaicism is the least common form of Down syndrome and accounts for only about 1% of all cases of Down syndrome.  Research has shown that those with this type of Down syndrome can have fewer characteristics of Down syndrome. 

3. Translocation. This type of the Syndrome accounts for only about 4% of cases of Down syndrome. The total number of chromosomes in the cells remains 46. However, an additional full or partial copy of chromosome 21 will attache to another chromosome which has been found to usually be chromosome 14. The presence of the extra full or partial chromosome 21 causes the characteristics of Down syndrome. 

The cause of Down Syndrome is still unknown at this point. We know what happens, but we don’t know what causes the chromosomal abnormalities.  The only thing that has been linked is advanced maternal age. After the age of 35 your chance increases to 1 in 350 births and continues to increase from them. At the age of 20 your chance is 1 in 2000 births.  There is a slight link with heredity but even then your chance is only about 1% to have a second baby with Downs. 

As people with any condition there is a change for life altering complications. Babies(older children and adults) lives can be complicated by heart defects, leukemia, infectious diseases. They tend to have a low immune system so this puts them at a higher risk for pneumonia and other illnesses. They can also develop seizures, dementia/Alzheimer’s at an earlier age than most, sleep apnea and obesity. 
As for the treatment of Down Syndrome, it will vary from baby to baby and depend on the degree of the Syndrome. Most babies will need therapies (physical therapy, occupational therapy or even speech therapy along the way. And some will require special education when they get to be school aged. And as far as medical care it will depend on the baby. Many will require heart surgery at some point. Others won’t require any special treatment. There are also a lot of support groups, both in-person and online for the mom and families. These will give the families other to talk to who have been through a similar situation. The better understanding and treatment for these babies has greatly increased their life expectancy. In 1910 people with Down’s had a life expectancy of only 10 years. Now with the advancement in care and understanding of the condition the life expectancy has increased by 50 years. And it is though that a person with Down Syndrome can live to be 60 years old. And I’m sure as more research is done that this will only continue to increase. 
I have only provided you with a brief description and treatment options for this condition. But there are TONS of great resources that can be found online. I will place the resources I used to write this at the bottom of this post. 

Help me spread the word about Down Syndrome on this World Down Syndrome Awareness day. 
-Amber 
Resources 

http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/

https://g.co/kgs/SFhJLs

http://www.mayoclinic.org/diseases-conditions/down-syndrome/basics/complications/con-20020948

Multiple Sclerosis Awareness Month

March is Multiple Sclerosis Awareness month.  So I thought I would do my part and bring awareness to another awful autoimmune disease. I decided I wanted to cover the following topics in the blog.   What is MS? Who gets it? What are the symptoms? How is it treated? And what can we do to raise awareness? So let’s jump right in. 

Per the Mayo Clinic no one is really sure of the cause of MS. But it is considered an autoimmune disease, in which the body attacks its own tissues. “In this case the immune system destroys the myelin, which is the fatty substances that covers and protects the nerve fibers in the brain and spinal cord.” MS is a disease of the central nervous system (CNS). The CNS consists of the brain, optic nerves (which control the eyes), and spinal cord. The destruction of the myelin causes reduced communication between the brain and the nerve pathways. 

Due to the above noted destruction of myelin and the fact that in involves the nerves and the spinal cord. Common MS symptoms are: visual problems, overwhelming fatigue, difficulty with balance and coordination, and various levels of impaired mobility. More specifically MS can cause pain in the back or the eyes.  Tremors in the extremities may also be present.   They can have all sorts of problems with their muscles from cramping, to the inability to rapidly change motions, or could have involuntary movements, muscle paralysis, muscle rigidity, muscle weakness, problems with coordination, stiff muscles, clumsiness, muscle spasms, or overactive reflexes. It can also cause sensory issues like pins and needles,  difficulty with taste, reduced sensation of touch, or uncomfortable tingling and burning. And can also cause issues with bowel and bladder control.  This list is not all inclusive. There are a ton of symptoms that can be present in someone with MS. 

It is estimated that about 2.5 million people worldwide have been diagnosed with this disease. This number can only be estimated because it is not a disease that the CDC requires physicians to report. Also because the symptoms can sometimes be so vague. Most people who are diagnosed with MS fall between the ages of 15 and 50. MS is not something you you can “catch” from someone who has it. Although it does seem to have a heridatry link.  At this point there is no cure but researchers continue to try to find one.  

Right now the main treatments for MS are physical therapy to treat the muscle and balance issues. A neurologist is usually the main dr to treat Ms and will do with immunosuppressive drugs to suppress the immune response that causes the condition. As well as treating the patient with steroids to treat some of the symptoms and hopefully slow the progression. It is also recommended that people with MS see a counselor of some kind to help deal with the changes in their functioning and changes in lifestyle they are dealing with. 

Since there is no cure we all need to do our part to raise awareness. Simply because it can affect anyone. It doesn’t see gender or race.  It’s simply a dysfunction of the persons immune system. We can raise awareness by getting involved with or donating to the MSAA. The Multiple Sclerosis Association of America. They are the leading resource for those with MS. They have many functions. They provide resources to people with MS, they fund research for MS and education for those newly (and not so newly) diagnosed with MS. One thing we can all do easily is wear orange during the month of March to raise awareness. As orange is the awareness color for MS. 

I have provided the link to the National MS Society. On that page there is more information about raising awareness and the things they are doing to do so. http://mymsaa.org/news/ms-awareness-month-2016

This was meant to be a brief but educational piece about MS and how we can raise awareness. I hope it opened your eyes a little on how many people are affected. And also give you an idea of how this disease affects those who have it. As well as provided you with resources to help raise awareness of this horrible disease. 

-Amber
Resources:

http://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/dxc-20131884

http://mymsaa.org/news/ms-awareness-month-2016