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Things I’ve Learned Since Becoming a Spoonie

Five years ago I started my journey of becoming a spoonie. In those five years I have learned many important life lessons. And along that journey I’ve learned many hard lessons, lessons that had I not gotten sick I might have never learned!  So I wanted to share just a few of the most important with you. Many of the things I’ve learned I’m sure many of you can relate to! So let’s just jump on in. 

1.  NO ONE will ever understand the fatigue or pain level unless they too are a spoonie. I don’t know how many times I have heard “Just drink an energy drink!” Really….. that won’t help. Or “Just take some ibuprofen and get over it!”  Yup! For the most part ibuprofen won’t help at all. If you don’t live it everyday there is no way that you can ever turkey understand.  

2. You learn really quick who your TRUE friends are! Sadly, after getting sick I figured out that not everyone I considered true friends actually were.  I have lost several friends because I am a spoonie. They get tired of my cancelling plans and not having the energy to get out and do things!! So they moved on and left me behind. Not everyone is like this and I did keep some old friends. But it seems like most turn their back and don’t want to deal!

3. I have learned to STAND UP for myself! Once I was diagnosed with Lupus I learned very quickly that if I didn’t stand up and advocate for myself that no one else is going to do it for me!  I learned to be forceful in asking for the things I felt were necessary and important. I have leaned that I have to stand up for my body and what’s important to me. In medical situations and personal situations, I have to stand up for me if I’m going to get what I need or want. Or what I feel is important. 

4. I learned how important it is to appreciate the small things.  I now understand how important it is to appreciate the small things. Things like having the energy to shower, do my hair and makeup all in one sitting. Or being able to work both days a week that I’m supposed to. Or having a streak of several days without a headache. Or being able to go to dinner AND a movie.  To non-spoonies those are things that they can do routinely and don’t understand how big those things are for me. 

4. I’ve learned how important it is for me to be honest with those close to me. I learned the hard way that I have to be honest about how I’m feeling.  Rather than making an excuse to not do something, I need to tell them I can’t because I don’t feel well. I learned to be honest with my symptoms and that it’s okay to be honest about them.  Those closest to me will understand and not make me feel bad about sharing them. 

5. I have learned just how important family is and how to appreciate them. I have spent countless hours in the ER, days in the hospital locally, and a week at Mayo Clinic. And my family is always by my side. My mom has set with me for most of those hours in The ER and took a week off to take me to Mayo. And my grandma has spent countless hours sitting in an uncomfortable chair at my bedside during hospital stays so I wouldn’t be alone all day. Without the love and support of my family I couldn’t have gotten through the last 5 years. 

6. I learned how to accept myself!!!  This may be one of the most important lessons I have learned.  I have learned that people are going to stare. They are going to think I’m just a typical obese women. They don’t understand that my weight is from long term use of steroids. They won’t understand why such a young women limps or has a handicap sticker. They may assume I’m just plain lazy. But that’s okay!!! I know the truth. I’ve learned to keep my head up and ignore the looks. It’s important for me just to be me!!! 

7. I’ve learned in many situations you just have to smile and laugh or you’ll cry.  I would much rather laugh things off and smile than cry. The conditions I have are bad enough without spending my days crying. Most of the time there is nothing that can be done to improve the situation so I have to just laugh. Not saying I don’t have days where I cry. But I have found the real importance of laughter. 

8. I have learned that it’s okay to have a bad day.  When you are living with chronic illness there are just going to be bad days. And there is nothing we can do to change that. But it’s okay to give into those bad days occasionally.  You just have to remember that the bad comes with the good. And because you feel bad today doesn’t mean you will feel bad tomorrow. 

9. I have learned that not all medical professionals are going to treat you kindly and some may look at you as a drug seeker.  This one has been hard to learn and I’m still working on accepting it. Being a nurse myself it’s hard when people just assume I’m a drug seeker if I seek medical treatment for my pain. They think I just want the drugs. When the truth is I just want something to take away the pain.  I’m not asking for high powered meds. I’ll take anything if it will get rid of the excruciating headache or pain I am having. 

10. I’ve learned that many of my friends will be people I may never meet.  I have met so many awesome and supportive people in support groups online. People I would consider some of my closest friends. Sadly, these people live all over the country or even world and I many never meet them. I know many people think this sounds crazy. But these are the people who also deal with the same problems I do. They understand the daily struggle because they experience it too. We understand each other in ways that most non-spoonies ever will. 

Living with a chronic illness (or more than one) changes a person.  It changes the way you feel about things, and how you look at things. It also shapes you as a person. It shapes you into a more understanding and caring person I feel. Because you have more compassion for what others are feeling.  Having a chronic illness is something I would never wish on my worst enemy but it happens. However, through the journey you will find the true meaning of life and learn many important lessons along the way!! 

I bet that a lot of you can relate to this list of things I have learned. I would love to hear from you and hear the most important,  or hardest lesson you have learned since becoming a spoonie. So please let me know in the comments or on one of my social media accounts. 

-Amber

  

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/

A Little Inspiration and A Little Truth

CHRONIC ILLNESS SCRIPTURES

Psalm 46:1-3 — God is our refuge and strength, a very present help in trouble. Therefore will not we fear, though the earth be removed, and though the mountains be carried into the midst of the sea; though the waters thereof roar and be troubled, though the mountains shake with the swelling thereof. Selah.
Isaiah 57:18 — I have seen his ways, and will heal him: I will lead him also, and restore comforts unto him and to his mourners.
Jeremiah 30:17 — For I will restore health unto thee, and I will heal thee of thy wounds, saith the LORD; because they called thee an Outcast, saying, This is Zion, whom no man seeketh after.
Psalm 41:3 — The LORD will strengthen him upon the bed of languishing: thou wilt make all his bed in his sickness.

Psalm 138: 3 — In the day when I cried, thou answeredst me, and strengthenedst me with strength in my soul.
I Peter 5:7 — Casting all your care upon him; for he careth for you.
Psalm 138:7 — Though I walk in the midst of trouble, thou wilt revive me: thou shalt stretch forth thine hand against the wrath of mine enemies, and thy right hand shall save me.

Psalm 18:2 — The LORD is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower.
Invisible Illness | Lupus Awareness | kNOw LUPUS – Poem

Lupus is flaring bad today

So, no I can not come out to play

Today I will stay in my bed

Because the flare is in my head
Today it is attacking my brain

To be around others, I feel ashamed

I know this is not my fault

having trouble to walk and talk
I feel like a drunken stroke victim

Can’t finish sentences I begin

Dizziness is ever here

My vision is not very clear
Even with my glasses its very blurry

I can’t do anything in a hurry

I stumble and have to hug the wall

Otherwise, I would simply fall
Other symptoms are here too

It’s a lupus party, I didn’t want an invitation to

Every joint, bone and muscle aches horribly

Even wheezing because of pleurisy
No matter how hard I try to wish it away

There is no cure, lupus is here to stay

Even though I look “just fine”

There’s a Monster hiding just inside
It loves to rear it’s ugly head

At times it makes me wish I were dead

It doesn’t hurt just when I flare

It hurts every day, every where
It has made me allergic to the sun

So it’s taken away my summer fun

I love the water so you see

It’s taken the outdoors away from me
Near every day I’d be in a river, lake or stream

Now I only visit them on a computer screen

I am always stuck inside

Unless there are lots of clouds in the sky
I think the thing that bothers me most

Is to my friends and family I have become a ghost

Invites stopped along with texts and calls

If you still love me look at and research the cause
I really want to hangout and spend time with you

It’s just now my whole life is askew

Some nights I cry myself to sleep

I always feel so very weak
Every morning I wake up in pain

Feeling like I was struck by a train

Sometimes the pain is so bad I just want to scream

The social and psych issues aren’t a dream
Being stuck in the house is no fairytale

I think sometimes it is probably like jail

Some days I want to hike a trail

Then I remember how it could fail
If I push myself too far on a good day

In bed or the hospital is the price I pay

Every now and then for a week

I get a huge ugly discoid on my cheek
People call me antisocial and lazy

These people are ignorant and just crazy

If someone had to walk in my shoes for a mile

There is no way they could say “I’m fine, with a smile”
If I could make others feel what I feel

They would have no possible way to deal

Straight to the hospital they would be driving

The whole way thinking they were dying
It is terrifying when you have important questions about your health

Because with this disease doctors haven’t this knowledge in wealth

So your doctor can do nothing but shrug

To all my lupie brethren, I give a gentle hug

Because I know that your day may be like the one above

This is my new EVERYDAY

Lupus will never, ever go away

By: Kelly Brown-Moore diagnosed in 2009 with SLE
-Amber

Pain Medication…. The Debate

Ma’am I see you have scheduled pain medicine on your list of meds……… Yes, I take them for my PAIN….. What do you need pain medicine for????  Well, let’s see. Could it be the Systemic Lupus? Or Maybe the Endometriosis? Or could it be the interstitial cystitis? Or maybe the chronic migraines or fibromyalgia?????? 

For some pain medicine is the only way that they can make it through the day. Maybe even the only way they can get out of bed!!!  For others it’s just something they can take a couple times a week and be good. Why is it that those of us with documented conditions that are known to cause pain are still looked at like drug seekers? 
Have you ever been on the receiving end of questions about the medication you take that just gets you through the day? Do you ever feel like you are treated like a druggie or a criminal because you need prescription pain meds? 

There is nothing more frustrating to me then being looked at like I’m a drug seeker when I go in to the dr or pharmacy because I take pain medication. And heaven forbid I ever go into the ER because if a hemiplegic migraine or a horrible lupus flair, and need some relief. When that happens it’s almost for sure someone will look at me like I’m drug seeking. This shouldn’t be!!! All the people out there who have abused the system and abuse prescription pain medication have ruined it for all the rest of us. 

We shouldn’t be grouped into that category. Especially when we have multiple document conditions that can cause life altering pain. But we are. I see almost daily that there are lawmakers trying to pass a law that should prevent the abuse of narcotic pain meds. But if that happens will we stop getting the looks? Or will providers stop making us feel like we can’t seek medical treatment for fear of being treated like a drug seeker?? In my opinion no!!  It’s always going to be a problem for us. No matter what laws are passed and how much thy try to cut down on the abuse of prescription drugs I feel like we are always going to be treated poorly. It’s always an assumption that just because we take the meds we are a druggie. 

I’m not saying every doctor or nurse or pharmacy treats people like that. But I guarantee that at least 5 or more of the people who are reading this could tell us a story about how they were treated or not treated because of the medication listed on their home Med list!

How do we stop this unfair treatment? How do we stop feeling like everyone assumes the worst of us?  I wish I knew. But we need to find a way. Find a way to prove to the world that just because you take pain meds you are a seeker or a druggie. Prove to the world that these conditions that we suffer from everyday cause such pain that we need those meds. Prove to people that sometimes without those meds we wouldn’t be able to get out of bed. Or complete our daily activities. And sometimes even WITH the meds we can not complete any of our daily routines. Do we carry a sign that has a list of our conditions? Sadly, that wouldn’t help. Because if you haven’t experienced the pain of these conditions yourself you can never fully understand. 

How do we prove to the world that just because there are those scummy people who buy meds for abuse or steal meds to abuse them, that we aren’t all that way? Sadly, in this day an age there is such a high rate of abuse of prescription meds that I don’t know that we will ever be able to prove our case. According to the American Society of Addiction Medicine, Of the 20.5 million Americans 12 or older that had a substance use disorder in 2015, 2
million had a substance use disorder involving prescription pain relievers. And In 2012, 259 million prescriptions were written for opioids, which is more than enough to
give every American adult their own bottle of pills!!! 

I don’t know about you but to me that data is staggering. And the fact that Drug overdose is the leading cause of accidental death in the US, with 52,404 lethal drug overdoses in 2015. Opioid addiction is driving this epidemic, with 20,101 overdose deaths related to prescription pain relievers is beyond understanding.  I completely underatand why law makers and medical providers want to find a way to cut down on the number of people taking prescription narcotics. But what they don’t seem to understand is that there is a large population with chronic pain issues who truly require these meds. 

According to the American Academy of Pain Medicine; pain is a significant public health problem that costs society at least $560-$635 billion annually, an amount equal to about $2,000.00 for everyone living in the U.S. This includes the total incremental cost of health care due to pain from ranging between $261 to $300 billion and $297-$336 billion due to lost productivity (based on days of work missed, hours of work lost, and lower wages).  These numbers are crazy to me. Do all these people really need pain medication or are some of them abusing it? Probably a little of both.  

 Chronic Pain is a real thing and needs to be dealt with. And those who really need the meds should be able to get them without feeling like they are being looked upon negatively.  I hope and pray that there is a way for this to be done. But at this point I don’t know how to go about it!  (Okay rant over!)

If you would like to share your story about how you have been treated negatively because you take prescription meds or have requested meds because of you condition. Please place those stories in the comments or email me. I would love to read them and compose another blog post with everyone’s story. 

-Amber 
Resources:

http://www.asam.org/docs/default-source/advocacy/opioid-addiction-disease-facts-figures.pdf

http://www.painmed.org/patientcenter/facts_on_pain.aspx

Makeup Haul

Lately I have become a makeup junkie. On a quest to find a good concealer for the redness in my checks (butterfly rash from Lupus) and the bags under my eyes. Also looking for a good foundation with good coverage that doesn’t make me look like I’m wahshed out or like my face is two shades darker than the rest of me.  When you are pale color matching is seriously an issue.  I’ve also been searching for good lipstick that I don’t have to carry around and out on all day. In this haul I found a few of those things and some unexpected finds. 

Ulta Double Duty Primer and Foundation has become one of my all time favorite foundations. A. I love that it’s a primer and a foundation in one. Because that saves me a step in the mornings. And B. The classic ivory is the perfect color for me. It has a nice full coverage for me. The only downfall is I like when my foundation has some SPF in it so I don’t have to have another layer. 

As for the NYX concealer I am less than impressed. It is the the green concealer which is supposed to be good for covering red areas and for bags under your eyes.  For me it does do some to cover those red areas. But as far as the areas under my eyes it creases and makes my under eye circles more apparent. Which is disappointing because this product has good ratings. 

The ULTA mineral blush called Peony  is great. It’s just the right tone for me. It’s a really pretty deep pink color. I will be able to wear it more when I have something that works to conceal the red areas on my cheeks. Right now I wear it seldom because otherwise I look just super red/pink if I’m not careful!! 

The ELF brand of makeup is understated and often missed in my opinion. It’s great makeup and it is super cheap. I got the Moonlight Pearl highlighter and it’s fabulous. For me a little goes a LONG way. But it’s sooo gorgeous. I can’t get enough of it. 


Lastly, my lipstick. If you haven’t heard of Lipsense you should definitely look into it. It’s different than any other lip product I’ve ever worn. It’s a long wear (4-18hrs) lipstick. I can put it on before work about 830am and eat and drink and talk all day and it will still be in place just like I put it on at the end of the day at 8 or 9pm when I take my makeup off for the day!! They have a ton of color options usually. But right now they are having trouble keep up with the demand because the demand is so high. But the coolest thing is you see in the picture I have three colors. Well with this product you can layer the lipstick and with just three colors you can make 27 different color combinations. It’s very different to put on. As you have to put it on in very thin layers.  And you have to have a gloss to seal in the color. If you don’t have the gloss the color won’t stay like it should.  It is pricey but if you think about how much you might spend on a regular namebrand lipstick. You could easily spend 20-30$ on a namebrand lipstick and it might last you a couple months at best if you wore it every day. I believe that they say if you wore the same color everyday one tube would last 4-6 MONTHS. I didn’t think I would jump on the lipsense train but once I did I loved it. (And no I don’t sell this product. I just think it’s amazing. 

-Amber

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

PRODUCT REVIEW!!

Recently I was sent some AWESOME awareness product by a super cool ETSY shop called Spoonspirations. Two reason this store is so awesome is because. All the money the shop makes goes to a non-profit organization.  And secondly she can do custom and personalized orders. Which is so cool once you see what she sent me. I absolutely loved the bag. It is sooo super cute. And is also handy. But the best thing about the bag is that it is a DIY bag. Meaning you can color/paint it however you like, so they are personalized for you!!  

The notebook has been super handy! It’s just the right size to stick in your purse, so you always have something to write on with you!! And the pen also has a stylus on top so you can use it for your smartphones or tablet. The bracelets she sent are pictures below. And they say “Chrinic Illness, Chronic Hope.”  Which is just fantastic. I actually gave one to my mom and one to my sister to wear as they always want to show support. So they could be something you could buy and give to others who support you, so when people ask what they are they can tell them about your disease.  I bought some last that were similar and lupus awareness month and gave them to all my supporters to wear all month. It worked out really nicely. So it’s a great product in my eyes.  And those dummies. How stinking cute are they!!!  I highly recommend that you head over and Check out her shop on Etsy. SPOONSPORATIONS
 

Sick of Being Sick

Since the beginning of March I’ve been sick!  Almost every day I feel terrible. And I have been running high fevers of an on all that time. I’ve had enough antibiotics for three people. Even IV antibiotics. And still sick. I have a sore throat, runny nose, constant wheezing and coughing.  Always nauseated and have actually lost about 5 lbs.  Now my lupus is flaring because I haven’t had my treatment since February because I have been sick. And can’t get it till I’m not sick or at least not running a fever. So it’s like a never ending circle. Sick, lupus flare, sick, Lupus flare, add in migraines and IC pain and repeat. It’s really getting old. 

I realized the one day this week that I haven’t left the house other than to go to work (which I haven’t done a lot of), or to go to the drs office. And my friends don’t get it. They just think I’m using an excuse again not to do something but I’m not. You know when you feel like crap the last thing you wanna do is get out of your nice comfy bed and go to some loud restaurant that serves food that just the smell alone makes you queasy. And all the noise causes a migraine.  It’s just not worth it. 

But then you get depressed bc you haven’t really gone any where or done anything. And you really don’t want to. And then for me the tears start. A dr I saw this week had known me for about eight years through work, looked at me and asked if I was depressed. And the water works started flowing. And then EVERYTHING that day made me cry. TV commercials, someone teasing me. It was stupid. Someone told me that maybe I should go back to my counselor. They were probably right and are seeing things that I don’t as they see me in a way I cant. So I made an appt. 

I saw a specialist in infectious disease.  And all my labs came back normal for the most part. So there’s really no reason for the fever. Except I’m a LUPIE!!! So I have no idea. And my insurance wants me to MAIL order the treatment I get ever 28 days in my port. Or they will charge me $835 a month. Sighhhh. Insurance companies are a topic for another day. So I have no idea what that next step will be if my provider and pharmacy don’t all me to mail order my medicine. 

I know that my problems pale in comparison to others. And I am okay with that. Sometimes you just need to vent. I am thankful for the health that I have. And that I am still semi-able to work part time. I am grateful that I am still able to get out of bed everyday.  And I don’t take any of those things for granted because I know that could change at any given moment. But truthfully, I’m just sick of being sick. 

 We all have crappy days, weeks or even months. But we will get through. We just have to pick ourselves up by our boot straps like we always do and do what needs to be done.  I think those of us with chronic illness are probably the strongest people I know. We do things with pain that other would never think of. We work on no sleep when others couldn’t make it an hour. We push through and try to make everything seem FINE. When really it’s far from that. I have had soooo much support from the chronic illness community the last month and really the last five years.  We are a hell of a group. And I couldn’t make it without all your support!!! 

-Amber 

PRODUCT REVIEW

A few weeks ago I received these BEAUTIFUL Hand stamped necklaces from Rachel and her ETSY Shop called All So Charming. Not only are they hand stamped by Rachel, they are just impeccable pieces of jewelry!! I have gotten so many compliments when I’ve worn them. The chain is very sturdy and perfect. My only issue has been I have a fat neck. (No shame here) and they are a little more chocker like on me. But that was nothing that couldn’t be fixed by an extender. Once I used that they fit PERFECT. She has a variety of options for necklaces. But these two are the ones that I felt were most “me!” I highly recommend that you go check out Rachel’s ETSY shop right now. Rachel is so kind and easy to work with. I will definitely be ordering necklaces from her in the future. 

Rachel was so kind to give all of my readers a coupon code that can be used until      May 7,2017 use the coupon code spooonie10 to get 10% off your purchase of $5.00 or more!!

Anxiety- What Is It and How Do We Deal With It?

I’m so sorry I haven’t blogged this week. I’ve been sick and so anxious that I can hardly stand myself!! So I decided to write on Anxiety. I think it’s something everyone deals with a various levels at times in their life. But why does it carry such a stigma. That’s what I want to know. I’ll talk about some stats down further in this blog but YOU ARE NOT ALONE IN YOUR ANXIETY!!! There are millions out there just like you!

Do you ever feel anxious? Have panic attacks? Feel like your world is coming in around you? Anxiety is nothing to joke with.  In the past few years it has become less taboo and something more and more people are talking about. But what do you do when the panic sets in? How do you calm yourself done and get out of the painic?  Finding a way to get through the anxious times and through a panic attack is very personal and is different for every person. There is no RIGHT or WRONG way to deal with anxiety. What ever works for you is what you should continue. There are so many people who want to tell you how to survive with anxiety. And the truth is the only way to survive is to do what helps you. That being said let’s look at some things that might help you get through the anxious times. And find out just how many of us there are out there who suffer from this sometimes life altering condition. 
Let’s first define anxiety. Anxiety has several different meanings so I’ll put them all here and you can decide which matches you the best. 1. a feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome. 2. desire to do something, typically accompanied by unease 3. a nervous disorder characterized by a state of excessive uneasiness and apprehension, typically with compulsive behavior or panic attacks. I also will add here a piece that I found that I didn’t know. OCD and PTSD are also classified with anxiety! 

Here are some stats to think about regarding anxiety. According to the Anxiety and Depression Association of America Anxiety is the most common mental illness in the us. Affecting some 40million adults (ages 18 and older). Which is approximately 18% of the population. So you are by no means alone in your struggle with anxiety. Although, only about a third of those with anxiety will seek medical treatment. Anxiety disorders can develop from a complex set of risk factors including: genetics, brain chemistry, and life events. 

So now we realize we aren’t alone and there’s millions of other people feeling just like us let’s look into ways what can cause anxiety and how we can try to help curb our anxiety.  If you research it you will find every option imaginable from exercise and meditation to diet changes and even far more drastic things. I’m only going to talk about the more common ways of dealing with anxiety. 

What can cause &/or induce anxiety? Well, really just about anything. Health problems, crowds, driving, relationship problems, problems at work. You name it and it can probably cause someone to feel some level of anxiety. What other causes are there? According to WebMD Anxiety may be caused by a mental condition, a physical condition, the effects of drugs, or a combination of these. The doctor’s initial task is to see if your anxiety is caused by a medical condition.  So as you see just about anything can induce or cause anxiety. 

The things that Mayo lists as therapies for anxiety are as follows:

Avoid alcohol, Reduce caffeine intake, Physical exercise, Stress management, Quitting smoking, Relaxation techniques, and Healthy diet. Cognitive behavioral therapy, Meditation, and Psychotherapy. Clinical psychologist, Psychiatrist, and Primary care provider (PCP). Or medications. 

But I want to talk about things like meditation and walking and more natural things. No, I’m not one of those holistic people (I’ve tried it doesn’t work very well for me). But many people don’t want to take medications unless they just have to. I sadly have to take medication. Or like I said above I can’t stand myself. So if we can find a way to deal with the anxiety ourselves that’s a bonus. 

The Anxiety and Depression Association of American has a FABULOUS table on their website of ways to cope with anxiety. So I decided it did a way better job of explaining this than I would. So here it is The two things on here that I wanted to address are finding your triggers. And talking to someone.  I find that when I am so terribly anxious that if I talk to someone and talk about why I’m so anxious it helps. That person needs to understand what you are going to and be non judgmental. Someone you find that has a calming affect on you. These things are essential in whoever you are talking to. Whether it be your best friend or a counselor.  If they are going to judge you for how you feel or what you are going through the conversation will actually be counterproductive. Finding your triggers is essential to managing your anxiety. Because once you figure them out it is easier to either avoid those things if necessary or find a way to deal with them. 

I didn’t want to drag on forever because no one wants to read a four page blog post. But I hope I have provided you with something that can help you. If you take away nothing else. Remember YOU ARE NOT ALONE!!  If you have questions or anything please contact me!  And I always leave the sources where I got my information below somfeeo free to check those out. 

-Amber 

References:

https://www.adaa.org/tips-manage-anxiety-and-stress

http://www.webmd.com/anxiety-panic/guide/causes-anxiety

https://www.adaa.org/about-adaa/press-room/facts-statistics