Rantings of the ER/Being Admitted to the Hospital

Time for another session of things I’ve learned. This time sadly, are things I’ve learned, or I should say things I was reminded of, while being in the Emergency Room and being admitted to the hospital. It’s amazing to me still how things haven’t changed in the last several years in the way they should have. Might as well not beat around the bush any longer. This won’t be long. But just short and too the point. So lets just jump right in.

1. In my experience, and hopefully not everyone find this to be true. It seems like if you use the word “chronic,” whether it be pain, or migraines, nausea, or whatever the case,  the providers see you as a seeker. I won’t go to far into this because I’ve talked a lot about this issue in previous blogs. Bit just because I have severe complex migraines that make me look like I am having a stroke does not make me a drug seeker. In fact!!!! In fact not one time. NOT ONE TIME did I ever ask for anything narvotic based. I just wanted something to take the damn headaches away. 

2. I feel comfortable that I can say this and maybe not get chewed a new one. Especially since I am a medical provider. But things get done in the medical field professionals time. Not necessarily the patients time. Coming from both sides this one is one of the hardest for me to deal with with.  I know what a lot of time what could be happening on their side while im hurting or nauseated.  I know that they have other pts. But at least have the courtesy to stick your head in the room and let me know that you are aware that I need to see you but it will be a couple of minutes. So I’m not just lying there dry heaving or hurting and cursing your name and wondering where you are for the last thirty minutes.  

3. It seems ER drs and nurses are always going to assume the worst of you. I know they see a TON of pts and a LOT of those patients are really crappy people who are trying to take whatever they can get from the system. But not all of us are like that.  Some of us are just there to try and get hep with whatever ails us. I understand that there is a fine line. But come on!! Don’t be a jack ass to all of us!!! 

4. Not all things are bad in the hospital. There are those doctors, nurses and patients care assistants who are true gems. They are the ones who will go out of their way to talk with you and make sure you are comfortable. That you have what you need. That you get your nausea or pain meds meds when you need them.  That you have ice chips. Or a popsicle. These my friends are true gems and there need need to be more of them. They are a dime a dozen. These are the ones we need to remember for surveys and thank you cards. 

Enough of my rambling for today. 

-Amber 

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 23-29 2017 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!!  

-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

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