The Spoon Theory, How Spoonies Get Through a Day

When you are sick and really feeling terrible, there is nothing that can be more irritating than when someone says to you, “At least you don’t loo sick!” While they may not mean this as anything but a compliment. In general it is NOT how most with an invisible (chronic) illness will take it. To hear you don’t look sick when you have an illness where your body is attacking itself on the inside but can’t be seen on the outside is very very frustrating. So much so that fellow Spoonie Christine Miserandino developed a way to explain how we are feeling. Her piece is called The Spoon Theory. If you aren’t familiar with this theory you need to be.

Christine decided that she needed to find a way to explain how well or poorly she was feeling to her best friend and roommate. Her roommate was the person who went to doctors appts with her, saw her sick and saw her cry. She stated that if she couldn’t effectively explain it to this person, how could she explain it to anyone. She thought about it for awhile and decided using spoons would make the most sense. And at this point The Spoon Theory was born. And stated, “At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.”

Christine went on to explain that the difference between a healthy person and someone with a unhealthy person is that someone with a chronic illness has to make a choice and choose what they do or don’t do every day! When a normal healthy person does not have to make that choice.

“Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.”

Christine goes on to talk about how at the beginning of the day the chronically ill start with X amount of spoons and that’s how many you get. No more, no less. And through the day EVERY SINGLE ACTIVITY that you do costs you X amount of spoon. That’s everything, including getting dressed, taking a shower, putting on makeup etc. All activities that most would be thinking that are simple and easy things that shouldn’t be a problem. However, activities like that are the ones most people will take for granted and do without a second thought. That being said, those who have a chronic illness may have to forgo those activities, or others, like drying their hair and putting on makeup (simple as they may seem). Those things may definitely be skipped if there is an activity later in the day that they know will take more spoons and they really want to take part in or attend. Even if we may be able to do those simple tasks like those what were mentioned above it make take use 5 times as long as it used to. Simply because we don’t have the energy to get them all done at once like we once did and may require frequent breaks through the getting ready process so that we don’t risk exhaustion before whatever it is we are doing! Those of us with chronic illness have to do what we can to conserve spoons so we can make it through the day.

Let me give you an idea of what a work day looked like for me before and after my Lupus diagnosis.When I was working as an RN, right out of school before I was my first life changing diagnosis, my mornings were very different then they are now! 7-10 years ago every morning I would get up and get dressed, do the normal tasks like deodorant and brushing my teeth as well as doing my hair, which could consist of being in a pony tail/bun or down and curling it! I would put on my makeup almost every day and eat breakfast at home before leaving. I would always leave for work with enough time that I could ensure that I would arrive on the nursing floor a full 30 minutes before I started my shift so I could fully prepare for my day. I would work a full 12.5 hour shift, most of which I was on my feet and going, going, going for the whole shift. I would sit very little usually only to chart and long enough to eat a quick lunch maybe 15 minutes, if I was lucky. At the end of my day I would arrive in the room where we gave report, right on time because I was usually busy until it was time to give report and leave. Once I left work, I would often go out to dinner or even out to the bar for a fun night out after work. I could easily survive on 5-6 hours of sleep and do okay. During part of that time I was also in school for my bachelors degree, so I also had to work on studying, writing papers and going to classes online and on the computer, as well as spending time in lab or clinical.

The previous scenario is so different then what it’s like now (most recently). When I was working as a hospice nurse in the field last year, I would wake up maybe 20 minutes before I had to leave, if I was lucky! Leaving just enough time to drink a yogurt shake or maybe something as i was driving, jump in some clothes, put on deodorant and perfume and brush my teeth. (Much different than the way I did before) Most days I would work anywhere from 4-8 hours a day depending on what my day was like, and how far i had to drive. By the time I got home I was in so much pain and so stiff I could hardly get out of my car and walk into my house. And most days I would shower and fall into bed. Even if i has only worked 4 hours. And this is where I would stay until the next day. I wouldn’t sleep that whole time most days, but I didn’t have energy to do anything else. And my spoons were totally and completely gone. There was no more meeting with friends for dinner after work or going out for drinks on a work night. And most nights I require no less then 8 hours of sleep, more likely 10-12 hours. And many times on my days off I would spend resting because I was tired from the day before and knew I need to rest up for the next work day.

When I came across Christine’s Spoon Theory, I found it to be the perfect way to explain my days and how I pick and choose what I do and don’t do. Over the last 6 years I have used this very theory many many times to explain what is going on with me and why I may cancel plans from time to time. When anyone new comes into my life I often times will send this to them so they can get a bit of an idea of what I have to deal with on a daily basis. And I suggest that all of you do the same. This works for all chronic issues. Not just Lupus and Fibromyalgia. It can be used to explain the energy conservation requirement of any condition that causes chronic pain and chronic illness. So since I could not show you Christine’s complete theory, I want to provide the link for you. The Spoon Theory in its entirety can be found by clicking that link. I recommend all of you read it even if you have read it before. I also recommend that you keep the link so you can send the theory to any friends or family who you feel needs a better understanding of what you deal with all day every day. I also hope that those who you share this with will have a little bit better understanding. And will maybe refrain from using those awful 5 words we all hate so much to hear, “But you don’t look sick!” If you are a friend or family member of someone with a chronic illness please take time and read Christine’s whole piece. It would honestly mean so much to the person in your life who is a Spoonie!!

Please share this post with anyone you might know who is dealing with a chronic illness either as the chronically ill, or as family or friend of the chronically ill, and you feel that they could benefit from it!

With Love,

Amber

I also want to send a shout out to Christine Miserandino for allowing me to quote her writing in this post!

Reference:https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

How I Really Feel About…….. Pain

Pain….. is something I deal with daily. And I am guessing that many of you do as well! It has just become a part of our daily lives and something many of us don’t give a second thought to. And most of us would give anything to have one pain free day where nothing hurt at all without having to take a pill to get that way. That being said it has become a BATTLE for some to actually get the medicine that they need to treat said pain. Thanks to all those who are abusing pain medicine it makes those of us who actually battle chronic pain to also be viewed as an addict to some care providers. It is so sad that people who have chronic pain and live in pain everyday have to jump through such hoops just to get the medicine that we need to be able to function.

I usually try to stay away from the highly debated issues like this, but I read something that really struck a chord with me this weekend. A fellow Lupie posted that she got to the point where she could no longer handle her pain at home with all the alternative options, and ibuprofen she has at home. So she went to the ER, simply because she didn’t know what else to do. And of course because her primary complaint was pain, she was looked at by some of the care providers that she was simply drug seeking. And I know she is not alone in this I know this happens all the time. It has happened to me when I went in to the ER with a Hemiplegic migraine, there was no test to show that I was truly in pain so its easy to assume that I really just want pain medications. I even had one doctor tell me that I was just a hypochondriac and that there was no reason for me to be seeking treatment in HIS ER.

That’s the whole problem with autoimmune conditions and chronic pain syndrome, there is not always a blood test or imaging that will show that the patient is truly hurting. Most doctors don’t understand autoimmune conditions therefore they don’t understand why we are in pain. If they can’t see a lab result change or something on an MRI or CT Scan to explain the pain they just don’t get it.  And it frustrates me to no end that I can’t be honest about my pain with some of my doctors without them looking at me and thinking I just want the drugs. When in all reality I just want a day where I can wake up and function like a normal person. I don’t like how the pain medications make me feel but if that is what I have to do to function then so be it. I think many of you would agree with me when I say I just want a day without pain. I would give almost anything to have a day, a week, a whole seven days where I didn’t hurt somewhere and I could do all the things that I want to do without having to spend the next day(s) in bed.

The government at the local, state and federal levels are trying to do what they can to change how pain medications are prescribed and filled to decrease the level of abuse. In some states you are only allowed a seven day prescription no matter what the reason for needing pain medication is. In other places you have to give a urine sample every thirty days before you can get a new script to show that you are really taking the medicine and not selling it. Pharmacies are now being linked in many states throughout their local areas to try to prevent those abusing drugs from doctor hopping and having multiple scripts from multiple different doctors. While all of this is positive and will hopefully start to decrease the abuse of pain killers. It has actually made it harder for those of us who really need it to function. We are being made to jump through more hoops then ever before.

The real question I guess is how do we change the views of these care providers, especially ER providers. Where they see a large amount of drug seekers everyday. What can we do to prove to them that we aren’t wanting more and more medications, that we just want help getting through this flare up. Even with our conditions in our charts that say LUPUS, MIGRAINES, ENDOMETRIOSIS or whatever conditions you have that cause pain, they still often times wonder. I have thought about this a lot and have come to the conclusion that we will never change the way they look at us. We just have to have tough skin and prove to them that we don’t want an extra script or something new to take at home, we just needs something to break the cycle we are in. Maybe one day more doctors and care providers will start to understand the conditions that cause chronic pain. Until then we are stuck in this horrible rut and just have to prove our self to each new provider, and show them who we are and what we stand for.

With Love,

Amber

Let’s Talk………Leggings

It’s not big news to you if you know me or others who struggle with chronic pain or Fibromyalgia. Or that when we dress, most days it’s purely for comfort. The general rule is that the more tight and uncomfortable the clothes are, the more uncomfortable we will be throughout the day. So yes many times we choose to dress for comfort over fashion. And yes, sometimes that means we look a bit slob like or dare I say lazy. But I can guarantee if you asked anyone struggling with the pain of Fibro (or other chronic pain) and the struggles of clothing, that they don’t mind. Anything we can do everyday to make our lives a little easier or pain free we will pretty much do. That is within reason of course. Sorry aover the course of the last few months I’ve been on a search for the “PERFECT” legging! And today I want to share what I have found!

Searching for the perfect legging can be long and arduous at times. And just plain frustrating. Okay, arduous, may be a bit of an exaggeration. However, the experience can be frustrating!! One of the biggest frustrations for me along this journey was to find leggings that not only fit but didn’t make me look like a whale, and didn’t break my pocket book! Another frustration with leggings in general is the looks of judgement or even disgust that one might receive. Just because I am dressing in leggings in public does not mean I am lazy!!! It simply means I am having a crappy day filled with pain and I don’t need your judgement or to explain why I chose my attire!!!

There are a few guidelines I feel ANYONE shopping for/wearing leggings should follow. They are as follows.

  1. Wearing your TWEETY BIRD or SPONGE BOB pajama pants in public is NEVER okay!! For everyone’s sake please take a moment and throw on some real pants before leaving the house!!
  2. When wearing said leggings I ALWAYS encourage ladies to buy and wear shirts that are long enough to cover your behind. It’s a much better look overall.
  3. Lastly, NEVER EVER wear nude color leggings!!! This is not a good look on anyone!!!

So now that we have talked about the guidelines for wearing leggings, let’s discuss my TOP 5 brands. These are my personal favorite leggings from 5 different retailers, and at different price points, in no certain order.

g1. Faded Glory- Fleeced Lined, Full Length Leggings. $9.99 (2 pack)~~ These leggings are PERFECT for the winter and for anyone who gets cold easily as they are lined with fleece. PROS- very warm and cozy, great price point, does not shrink if accidentally put in the dryer. CONS- Can cause the person wearing to get too warm! The waist band is an awkward width, it is not the standard wide waist band that most leggings have so it can sit easily in a person’s folds.

2. Women’s Leggings Old Navy- Price Range-$10.00- $32.00. They have a variety of lengths and styles. PROS- very soft and comfortable, thin waist line (the pair I have is a thin waist band, they have varying waist band widths available). CONS- will shrink if dried in dryer, fabric begins peeling after only a couple wears. Can be found in store or on Online at Old Navy.

3. Maurices- Ultra Soft Legging. Ranging in size from 0-4XL, with various styles and color. The original black ultra soft leggings are $18.00, & $20.00 for plus sizes. Right now they have a site wide sale, fBuy One, Get one 60% off! So now is the time to buy!!! PROS- VERY soft, great quality fabric that doesn’t shirk in dryer or peel after multiple times wearing. CONS- For ME these are much to high waisted, to the point the waist band is up under my breasts. I read reviews and did not see many complaints of this. So I believe it’s just my shape. These leggings can be found in store and on their website.

4. Agnes and Dora- In order to shop this companies options, it’s best to find yourself a distributor. My distributor is Sarah Clawson, she keeps some stock on hand and has a Website (click the hyperlink to shop) on which you can shop. Sarah is super easy to work with and is always willing to go out of her way to find you what you are looking for. Leggings are ALL $22.00. PROS- These leggings are very very soft and warm. They come in multiple colors, patterns and sizes. Sizes range from XS-XXXL! Sarah routinely posts new inventory on her Facebook site so her customers can see all the new things coming in! CONS- I really love these leggings and the only con i can come up with is the width of the waistband. I prefer a WIDE waistband, and these are more of a skinny waistband. Sarah’s website is linked above but you should also check out her Facebook Group here!

5. Last but certainly not least, a brand I feel confident in saying you have probably heard of and may actually own some. LULAROE. This is another company where you need to find a distributor to purchase from. The LLR distributor I have become loyal to and buy all my LLR gear from is Rebecca Weddle. If you search Lularoe Rebecca Weddle on Facebook you can find her VIP group. In that group she offers frequent sales and discounts. Now to the leggings!! They come in sizes Tween(size 00 and 0), OS (one size, size 2-10), TC (Tall & Curvy, size 12-18) and TC2 (Tall and Curvy too, size 18+). PRICES are $23.00-$25.00, and they come in countless colors and patters! PROS- Fabric is super soft and stretchy, the fact that they come in countless colors and patterns as I mentioned above. And these are quality items and will last a LONG time. The patterns do not fade and they can be dried if necessary, but it is not recommended! I also love the WIDE waist band that feels like it is holding everything in where it should be! CONS- Can be pricey, but like I said they hold up really well! Also it is almost impossible to get a plain colored legging through LLR!

This is just a quick overview of my favorite leggings I have found. I know you may be thinking this is a silly post. But until you have a condition that causes pain everywhere which can be made worse by clothing you won’t truly understand! Leggings can really feel like a lifesaver when you have to get out of the house but the thought of having to wear “real” clothes makes you want to cry! I hope this guide helps you to chose some better options as far as brands and distributors. Please leave me a comment letting me know what you thought of this post. But please be nice!!

With Love,

Amber

Let Me Tell You How I Really Feel!!!

Disclaimer: These are my opinions and it’s okay if yours don’t agree!

As I lay here feeling as tho I can feel every….single…. part of my body and it all hurts. I decided to look for some inspiration. Something to get me through this trial. I decided why not? None of my other tricks are working. Not even my Gold Standard Go-To’s. Like sitting in a hot bath, I think I’ve used all the hot water in the house! Probably good that no one will need any for several hours yet. I can’t sleep because even my hair hurts. I started looking for other ways to deal with the pain. Tried guided meditation which has helped some in the past. NOTHING! I started reading other blogs, reading inspirations pages, and I found some that fit. Then I decided maybe my pain could help someone else so I’ll Blog. And it’ll be a good way to pass a few minutes where I can focus on something other than the pain. And I’ll

Place the inspirational things I found helpful throughout the post!

Chronic pain is all psychosomatic (all in your head) people have been told! First, I would like to know how many (if any) o have been told that?!?! Secondly , I would like to know what gives those “Doctors” the right to tell you the pain you are feeling isn’t real? And lastly, I would like to know if they have ever spent a week, a day or even a few hours totally overcome by PHYSICAL pain. No, I’m not talking about spraining an ankle, or hitting your funny bone. While yes, those things hurt, that pain isn’t going to last. You can see an end in sight! With chronic pain you look for that light at the end of the tunnel and see nothing. Nothing but BLACK. There is no light. Chronic pain is just that, pain that’s chronic. Pain that you will live with at some level EVERYDAY FOR THE REST OF YOUR LIFE!!

If I had a nickel for the amount of times I’ve heard “Well, I just don’t know how you do it! how you put up with all that pain!” I’d be a rich lady. My answer is always and forever will be, “It’s my only option. I don’t have another. I can’t just say you know today I’m not gonna deal and wish the pain away.” There are days I wish I could, like right now. In this moment I wish I could just say “I’m done with you for now pain and it would go away!” But I can’t. And neither can all the other hundreds of thousands who deal with similar things. So for all of you who also deal day in and day out with chronic pain I applaud you! You are some of the most courageous people I know! And it’s because of you that I know I can keep pushing through.

“Courage is not having the strength to go on; it is going on when you don’t have the strength.” – Theodore Roosevelt (1858-1919), 26th President

The sad part to me is that most chronic pain sufferers & Lupus Patients suffers in silence.

They feel that it is a better option to suffer alone than to open up to a close friend or family member about what is going on. It’s sad that we have to feel that way. But I know why it happens. Let me give you an example that maybe you can relate to. Have you ever been home from work on a sick day? Not welling enough to work but well enough that you can text or play on Social

Media? If you have been in this situation, did you receive any backhanded, dirty text, or comments about how much better you MUST be since you are up and on Social Media?!? Probably not. But the second you have a Chronic Illness or Chronic Pain and stay home and someone notices you on the Internet the rumors start rumbling about how you must not be THAT sick if you can be on Facebook. When it’s quite the opposite. You still feel like a giant pile of horse manure, but Facebook is giving you a much needed distraction from what you are dealing with. And if you really wanna know, It’s my business how I spend my time!! Not yours!!

Living with a Chronic Illness or Chronic pain sucks. That’s just all there is to it. You usually end up losing out on opportunities in every aspect of your life, simply bc the pain is too much. No one should ever have to deal with pain to the point that they can barely physically move bc their entire body hurts. In this day in age there should be more medicines available to treat these horrible life altering disorders more directly. Those of you non-spoonies may be thinking, so go to the pain Doctor and get on some meds and move the heck on. Well, sadly it’s not that easy. I am in the third largest city in my state and no pain dr will touch me bc I have Lupus and Fibromyalgia. They won’t even see me in their office. So I, like many others across this fine country, are stuck without or get medication from a family doctor who is not trained in treating chronic pain.

In many cases we have those who are abusing the system and pain medications who have ruined the system the rest of us. Those of us who truly need treatment and medications should NOT be punished based on the poor decisions of another person. Okay I’ll get off that soapbox.

But seriously if you’ve never lived a period in your life where pain took over don’t be so quick to judge those who have. We who suffer would gladly give it all away to have a normal life again. We didn’t ask for this, want this, and the largest majority of Lupus Patients did nothing to cause the situation that they are in. So please before you judge do a little investigating on your own. Don’t assume that just because I look like a normal 32 yo female that you can yell or give me dirty looks for using a handicap tag. I have it for reasons that you may never know.

All we can do is keep fighting the good fight!! Keep doing all we can to advocate that we get good care and the meds we deserve. We deserve the chance to live a normal (or as close to it as possible) life just like everyone else does!

It does not matter how slowly you go so long as you do not stop.”

– Confucius (551-479 BC),

Philosopher

With Love,

Amber

Dysautonomia- The In’s & Outs

October is Dysautonomia Awareness Month. What is Dysautonomia (can also be called Autonomic Dysfunction) you might be asking?? If you look it up you can find all kinds of information. According to Dysautonomia International, dysautonomia is a very broad term that causes a some sort of malfunction of the Autonomic Nervous System(ANS). Let me pause here and explain what what the AND does so you can have a better idea of what problems could arise. The ANS Controls the body functions that would be considered “automatic.”  So things we can’t actually control ourself. Things like our heart rate, blood pressure, digestion of food, constriction and dilation of the pupils, kidney function, and our body temperature. Anyone who has Dysautonomia may have trouble regulating the above. So their blood pressure and heart rate may fluctuate and could potentially cause fainting, lightheaded, malnutrition or even death. 

If I were to ask 10 people if they heard of Dysautonomia, I would guess it would be less than 5. That being said Dysautonomia is far from rare. It is said that over 70 MILLION people world wide live with this in some form. This condition is not gender or race specific. Anyone of any race, gender or age can be impacted.  Sadly, like many conditions that we apoonies have there is no cure. However, research is being funded to research and hopefully develop new and better treatments, and hopefully someday a cure. Sadly even though so many people are impacted by this condition, just like many spoonie conditions, it may take years to be diagnosed. Simply because of lack of awareness not only among the public but also within the medical profession   

Dysautonomia will generally involves failure of the sympathetic or parasympathetic systems. Causing excessive or even overactive ANS actions. Dysautonomia can be localized leading to reflex sympathetic dystrophy. Or more ge realized, causing pure autonomic failure. It can also be acute in action and therefore reversible , like Guillain- Barre. Or progressive and chronic like diabetes and alcoholism. Being that it’s a very complicated condition it can also happen as a primary condition, or along side with degenerative neurological conditions like Parkinson’s. Predominant signs of dysautonomia caused by sympathetic failure are impotence in men, and a drop in blood pressure when standing!! On the other hand if the patient is experiencing excessive sympathetic activity may have or show high blood pressure and:or a fast heart rate!!  Primary dysautonomia is  usually inherited or due to some sore of a degenerative disease, while secondary dysautonomias usually results from another condition or injury.

So we’ve talked about who can be effected by Dysautonomia/Autonomic Dysfunction acute vs chronic conditions. And what those conditions might look like. Now let’s look at signs and symptoms. 

Autonomic Dysfunction have the potential to affect only a small part of the ANS or the entire ANS. Symptoms may vary depending on how much of the ANS is affected and if there are any nerve disorders. 

Generic Signs and symptoms of Dysautonomia: dizziness and fainting upon standing up, (aka orthostatic hypotension), an inability to alter heart rate with exercise, or exercise intolerance. sweating abnormalities, which could alternate between sweating too much and not sweating enough, digestive difficulties, such as a loss of appetite, bloating, diarrhea, constipation, or difficulty swallowing, urinary problems, such as difficulty starting urination, incontinence, and incomplete emptying of the bladder, sexual problems in men, such as difficulty with ejaculation or maintaining an erection, sexual problems in women, such as vaginal dryness or difficulty having an orgasm, loss of vision problems, such as blurry vision or an inability of the pupils to react to light quickly. 

Anyone can experience any or all or none of these symptoms depending on what the cause. Symptoms such as tremor or muscle weakness may occur due to certain types of autonomic dysfunction.

There are three main types of Dysautonomia: 

Neuro Cardiogenic Syncope (NCS) is the most common kind of dysautonomia. It is estimated that tens of MILLIONS of people are affected worldwide. The main symptoms a person with this condition might feel would be: fainting (or syncope), which may happen once or it could be happening frequent enough that it would interfere with a persons daily life! 

Naturally gravity will pull blood downward  but a healthy ANS adjusts the heartbeat and muscle tightness to prevent blood from pooling in the feet and legs and makes sure blood flow returns to the brain.  Most treatments are aimed to reduce symptoms. 

For people who faint they should avoid the following triggers. 

-dehydration, stress, alcohol, very warm areas, tight clothes. 

Meds like beta blockers and pacemakers are often used to treat people with severe NCS. 

Postural OrthostaticTachycardia Syndrome: This conditions is also known as POTS and affects between 1 and 3 million people in the US alone. Approximately 80% of those 1-3 million are female. IT COMMONLY AFFECTS PEOPLE WHO ALSO HAVE AN AUTOIMMUNE CONDITION!!!!!

Symptoms can include:
lightheadedness and fainting, tachycardia, or abnormally fast heart rate, chest pains, shortness of breath, stomach upset, shaking, becoming easily exhausted by exercise, over-sensitivity to temperatures

POTS is usually a secondary dysautonomia. Research has found high levels of auto-immune markers in people with the condition, and generally patients with POTS are also more likely than the general population to have an autoimmune disorder, such as multiple sclerosis (MS) or lupus! 

Apart from people who have POTs having  auto-immune factors, other conditions that have been linked to POTS or POTS-like symptoms include: some genetic disorders or abnormalities, diabetes, Ehlers-Danlos Syndrome, a collagen protein disorder than can lead to joint hypermobility and “stretchy” veins, infections such as Epstein-Barr virus, Lyme disease, extra-pulmonary mycoplasma pneumonia, and hepatitis C, toxicity from alcoholism, chemotherapy, and heavy metal poisoning, trauma, pregnancy, or surgery

Research for the causes of POTS is continuous . Some scientists believe it might be due to a genetic mutation, while others think it is an autoimmune disorder.

Lastly, (for the purpose of this post) 

Multiple system atrophy- Multiple system atrophy (MSA) is less common than POTS and NCS. One of the big difference in this conditions and the others discussed is that  It is more likely around the age of 55 years. Even though it is less common MSA is estimated to affect between 2 and 5 people in every 100,000. It is oftenhard to diagnose because it is often mistaken for Parkinson’s disease because the early symptoms are similar. In the brains of people with MSA, causes certain regions slowly break down, in particular the areas of the cerebellum, basal ganglia, and brain stem. The break down in those areas leads to motor difficulties, speech issues, balance problems, poor blood pressure, and problems with bladder control.

MSA has not been found to be hereditary or contagious, and it is not related to MS. Researchers know very very little about what may cause MSA. As a result of not knowing the cause, there is no cure and no treatment to its slow progression. Treatment can, however, manage specific symptoms through lifestyle changes and medications.

As you can see Dysautonomia is very complicated and can impact many parts of the body from the heart to the brain. While some of the conditions that fall under this umbrella are well known with good treatment options.  Others, mainly MSA is very unknown and there is no cure or treatment.  Especially important to us is the research of POTS as is directly related to autoimmune like lupus. And many people with Lupus end up having POTS. Like many other conditions we need to do more research and find good treatment options for all these conditions!!
References:

http://www.dysautonomiainternational.org/page.php?ID=34

https://my.clevelandclinic.org/health/articles/dysautonomia

https://www.healthline.com/health/autonomic-dysfunction

https://www.medicalnewstoday.com/articles/76785.php

Raising Awareness of Invisible Illness 

Invisble illness, invisible disability……. To those who don’t have one, most would assume that it’s in your head. Thus invisible. However, this so far from the truth An Invisible Ilness is an illness that cannot be seen outwardly.  So for instance; Migraines, Lupus, Rheumatoid Arthritis, Kidney Disease, thyroid disease, Heart disease, arthritis, fibromyalgia, Chronic Fatigue Syndrome, or Chronic Pain. This list goes on forever!!  Invisible illnesses could even include mental illnesses. You can’t and most of the time will never see mental illness outwardly. They are conditions that can not be seen by just looking at someone. They are conditions that may be wreaking havoc on a person internally but you would never know because they may or may not be showing any signs outwardly. The Invisble Disabilities Association has deemed October 15, 2017 – October 21,2017 to be Invisoble Disabilitoes Week Online. A week to celebrate if you will, or bring conditions like these to the forefront. So let’s do just that. 
When you see someone in their thirties get out of a car they just parked in a handicap spot. What’s your first thought? For most I would almost guarantee it’s not “Oh how sad, I wonder what condition has made them disabled!”  For most it is probably more along the lines of “Look at that fat lazy girl taking up a handicap spot. I bet that tag belongs to her grandma or somethings!”  Now, don’t get me wrong not everyone thinks that way. But I know a large amount of people do. I have even caught myself at times thinking things I shouldn’t. Sadly in this day in age it just seems like second nature.  People don’t automatically assume that their may be a reason that a 32 year old slightly overweight female has some big bad illness because on the outside other than maybe a limp or the look of exhaustion on her face you don’t see anything wrong.  

    According To Everyday Health,  “But for the millions of people who are living with arthritis, fibromyalgia, chronic fatigue syndrome, and other forms of pain that are “invisible illnesses,” explaining what’s wrong is another side effect of their condition. Not only do you have to put up with challenging, often painful, and sometimes debilitating conditions every day, but on top of that, you may have to face skepticism from people — friends, family, and co-workers, as well as strangers — who don’t understand what’s wrong with you.”

    So what do you do to get past the skepticism and the non-believers? Do you put up bumper stickers with a list or your conditions? Or wear a T-shirt that says something along the lines of “Yes, I’m really sick? No!  Because you can’t change the way people think.  All we can do is pass on awareness to our friends and family. And even the people who follow us on social media. The only way we will ever get past the way people who view those of us with invisible illness is awareness. 

    Awareness can come in many forms. For me Blog. I can get my information out to larger volumes of people by blogging. I also use My social media accounts as platforms to spread awareness. Do people get tired of it? I’m sure! But we have to spread awareness for the Invisiblem Illnessea that are touching our families and friends. Should we shove it down peoples throats? Absolutely not, people aren’t going to change!  Some people will always think we are just lazy. And you know what we have to be okay with that bc we can’t change anyone else. 

    So help me help us this week by spreading awareness of Invisible Illness. One way we can do so this week is to change the frame on our face book profile picture to one that says I live with an Invisible Illness for the week. That just might open some eyes for people around you!!  The Huff Post posted this graphic and it feels like the perfect way to end this blog. But should you have any questions or anything please reach out!  

    Go out and spread awareness of your Invisible Illness/Disability!

    https://www.everydayhealth.com/pain-management/invisible-illness-when-others-cant-see-your-pain.aspx

    https://m.huffpost.com/us/entry/8178886

    Dealing with Social Isolation

    When you read the words social isolation what is the first thing you think of?  Is it Tom Hanks being stuck on a deserted island and resorting to talking a volleyball to not go nuts?  Is it those poor old people who live by themselves and have no friends or family to ever come see them? According to free dictionary.com – social isolation is the process of separating, or the state of being alone.  So this could be taken in several different ways.  Anyone can suffer from social isolation. 

    When you are chronically ill you often suffer from many kinds of isolation. You are feeling isolated from the world because you don’t leave the house often due to not feeling well and for fear of getting sick. You may also feel religious isolation because you can no longer regularly attend church like you once did. And you feel like you are isolated from your church family. Probably the most common type or feeling of isolation is the feeling of isolation from your friends and family. Also known as social isolation. Due to the fact that you no longer feel like doing the things you used to and you often times end up cancelling plans. And once you start cancelling plans much of the time people will stop asking you to do things. Because they just assume you’ll say no. And possibly because they assume you just don’t want to spend time with them when that’s so very far from the truth. 

    “Belonging” is a complex social concept, relating to people, places, and things. It is fundamental to our emotional well-being, helps define us, and keeps us connected. Social isolation, on the other hand, is when you distance yourself, physically, psychologically, or both, from your network of needed relationships.When you have a chronic illness, isolation can have unforeseen consequences, including worsening symptoms, unexpected health crises, hospitalization, loss of interest in activities, and decreased levels of energy. Anyone living with a long-term health condition is at risk for social isolation.” Upwell.com

    I asked the members of Lupie Groupies (the Facebook support group I am administrator of) about their thoughts and feelings on isolation. Below are what they had to say. 
    This fellow spoonie said “The only time I feel the isolation is when I’m feeling better. Otherwise to be honest I’m just to sick to care. If I am lonely or bored it means I’m improving ( which hasn’t happened in awhile).”  Which made me think. She is so right. It’s when I feel better that I start noticing my feelings of isolation because I feel like getting out of the house and doing things. Whereas when I’m sick the last thing I’m thinking about is leaving the house to hang out with friends.”

    Kim had this to say “I too generally feel more isolated when I am feeling better. However, these past few weeks have been the High Holy Days for our Faith and I have not been able to participate either because I have been too weak or in the hospital. This is really hard on me as my faith is very important me. I have not been to services in a while because of my fatigue and pain. These issues just aren’t going away either. I also don’t see many people on a regular basis either due to illness except family. When I am doing better this can be upsetting at times. I am an outgoing person with a heart for people. The friends I have do which are few have been my friends for 30 years and we are more family now than anything. They have stuck but others have not because I cannot be there to go out to lunch or just hang out. I cannot say with any certainty that I will available for them. My body doesn’t allow that.”  She touched on many of the types of isolation I talked about up above. And I appreciate her openness and willingness to share. 

    Elizabeth had this to say,  “I’ve been fortunate to have a long stretch of time that I was doing very well and was able to do things with a lot of people. Now I’m falling apart again, Benlysta stopped working, I HURT all the time, etc. I’ve had to cancel so many plans that I’ve had for quite some time and any time I allow myself to think about it I start crying. The internet is good for kind of talking with people, but on the other hand it sometimes hurts to look at Facebook and see life going on without you. And they should live their lives, I get that, but when living my life equals sitting around in pain it’s rough. So yes, social isolation for me is the worst right after a feeling great period because I’m having to say no to so many things I enjoy and then watch others have fun without me.”  She makes a great point about the internet. It’s a great tool for finding support groups and friends suffering with similar conditions. And finding people to talk to who share your feelings. However, it can also be a negative experience when you see all the fun things and vacations and such that your friends are doing and you aren’t able to. 

    There are ways to combat feelings of social isolation. Upwell.com have five things that can be done to combat those feelings. They are listed below. 

    Five ways to keep social isolation from taking over your life

    1. Do your research. People often struggle with what they don’t know. Invest time in learning about your illness, symptoms, and treatment options so you do not fall prey to the emotional difficulties of illness, including the desire to be alone. By being proactive, you can understand triggers and keep isolation from taking over your life.

    2. Participate in e-social activities. We are blessed to live in an age where social networks make it easy to reach out to others. These are especially helpful when illness and pain prevent us from leaving our homes. Many different e-social activities, including email and instant messaging, give you an opportunity to stay connected daily. It does not matter whether you are reaching out to friends, family, or online acquaintances; the important thing is that you are connecting and not struggling alone. 

    3. Join a real life support group. Real life support groups are a great place for the chronically ill and isolated. They are a resource for information and emotional support, and they offer an opportunity to vent to people who understand. They are also an excuse to get out in the world. To find a local support group, Google a national organization for your condition, and then locate links on the page related to support groups or a local chapter. For example, the Arthritis Foundation has a local chapter search where you can find all the resources for your area, including real life support groups. Or, you can try the U.S. Department of Health and Human Services’ support group page.

    4. Take part in the real world. There will be times when you struggle to take part in the real world—whether it is spending time with loved ones or focusing on your career perspectives. Participating in the real world keeps you from becoming isolated. It also keeps you enjoying life, making memories, and feeling positive in a life that isn’t necessarily easy. Let others know you can participate, and join in all the activities you reasonably can handle. Volunteer, join a book club, or meet a friend for coffee or lunch at least once a week.

    5. Get comfortable with being alone. While it is important to have a network of people to relate to, there will be times when life requires you to be alone or when you simply want to be alone. Get comfortable being on your own. Learn to lead your own life and make your alone time productive and healthy. You can try meditating, writing, or reading to help you deal with isolation when chronic illness is dominating your life.   

    Social isolation can be something that anyone can deal with. But those with chronic illness are more common to deal with these feelings. One of the ways upwell.com gave to help deal with these feelings is to find a support group. Support groups can provide you with information but they can also be a place to find friends and confidants in those who are dealing with similar conditions. If you don’t have a support group but are interested in finding one let me know and I can help you find one. 

    Amber 

    Reference:

    https://www.upwell.com/articles/coping-and-support/manage-social-isolation-with-chronic-illness.html

    Content Direction— Please HELP!

    I’m working on developing my website and really turning it into what I want it to be. I somehow want to merge my health, which is a huge part of my life, along with some of the fun stuff. Like makeup, and tutorials and reviews and book reviews.  But I need to know what you the reader is interested in, so I know where to go from here. 
    Below I am going to give NUMBERED ideas for content. After you read this please leave me a note in the comments telling me what you would like to see more of. So I can reign in all these thoughts and know where to focus my energy!  I appreciate the help. If I don’t list something you would like to see, leave it in the comments as well. 

    Thanks for all your help!

    1. Medical content- my main focus has been and will continue to be on chronic illnesses. Treatment options, research etc 

    2. Makeup content- reviews, tutorials etc(might also include some clothes and bags)

    3. Books reviews/discussions (from all genera)

    4. Lighthearted, uplifting content – poetry, bible verses, prayers etc

    5. Life content. What’s going on with me and the family, maybe more about what’s happening with me weekly.!!?

    6. Self-help kind of content

    8. Anything you want to see here let me know!!!
    Thanks for taking time to respond to this I greatly appreciate it. 
                                                                        Content meme found using google search. 

    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.  

    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