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Friendship and Chronic Illness 

It’s true once you’re diagnosed with a chronic illness or a multitude of chronic illnesses your life changes. Not just simply Your Health either.  Your social changes dramatically.  It seems like your friends start dropping like flies. Some can’t stand the sight or the thought of you being chronically ill. While others can’t be bothered with your “flakiness,” and don’t understand why you can’t make plans in advance or why you will cancel at the last minute.  But with a chronic illness those things are just part of it. I may feel great today and the idea of a concert or a night out in three weeks sounds fantastic, but there is no way for me to know how I will feel that day!  And it’s not that I am being flaky! I just don’t know what my crazy body will do!  

Over the years since diagnosis I, like many just like me, have lost friends. Not all at once. But one by one. People I considered my best friends or thought I would be life long friends with just walked away for reasons unknown or because they couldn’t handle what’s was going on in my life. I get it. It’s hard to see someone change so much and have no control of what their body will do next.  The hardest part of all that for me is that these were the people I neded the most. The people who I leaned on when times were tough. 

I decided to take a survey of a support group on Facebook. I asked them how many of them still have more than three friends from the years pre-diagnosis. Of the 13 who responded only TWO said that this was still the case. The other 11 stated  that they no longer have have three or more friends prior to diagnosis. And the following comments were left:

-It’s true though, it becomes so hard. Although I’ve learned it isn’t all to do with the Lupus anymore. Now I’m *that* friend that is busy every day and every weekend and can’t find time to eat lunch with friends. 
-My husband is my best friend, and literally my only close friend. I tend to lose touch with friends because I’m “flaky” when it comes to plans thanks to Lupus. We don’t really fight, just people tend to stop making plans that will likely fall through.
I don’t know what I would do without my friends, people who have known me since college, we’re talking 30 years. They’ve been with me through everything and now this.
-I have 2 very close friends and some acquaintances. I generally am with my family only and only 1 of my 2 friends. I cannot make plans that are long term because I guarantee that I will be there. My body does not afford me that luxury. I have lost friends due to this. It is difficult and can be lonely. I am so thankful for my family otherwise I would be alone a great deal. I cannot drive anymore so that is further isolating. Chronic diseases have taken a great deal of my social life since I can’t drive and make long-term plans and often cancel plans that I have made. I have multiple autoimmune disorders as do many of us and this makes it even more difficult.
-My really close friends are my husband, my sister in law and a lady that I met on FB after I was diagnosed… I don’t have any friends that I am still close to from before I was diagnosed, because they couldn’t handle my being sick all the time… 😔                                                                           -My closest friends have came after my diagnosis. People that I thought were my best friends before lupus have turned out not to be suck great friends. I have a few that I still talk too, but even with them I feel super guilty when I either won’t make plans or have to cancel 🙁

I do consider myself lucky however as I do have a couple of really awesome friends here locally who are so good to me. They come and visit me in hospital, they check in on me routinely.  And even spend their time taking me to drs appointments, Infusion’s, and spending hours in the ER with me!  I can’t thank them enough. However, some of my best friends are people who I’ve met through my support group!! Not only are they great people but they totally understand what I am going through and don’t make me feel bad for it!  I may never get the chance to meet them in person but I will be forever grateful for their friendship. 

So I guess the takeaway in this is that sadly most people don’t understand chronic illness or don’t want to take the time to. People also will often walk away when things get tough. It seems it is just human nature. Not to generalize but I’ve seen it happen too many times as a nurse. People get sick and their friends and family don’t know how to deal with it. So for them it’s easier to just walk away then it is to deal. I wish it wasn’t that way but it just seems to be that way. I hope for you this is not something you experience. But if it is know you are not alone. And there are a ton of support groups where you can not only find support but friendship in those who understand you and your Life. 

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

 PRODUCT REVIEW!! Senegence’s Newly Formulated Concealer! 

Alright, so as a women you all the importance of a good concealer. In all the years I’ve been wearing makeup I’ve never found one that I felt did a good job. They seem that they either don’t cover the bags under my eyes, which is a MUST for me. Or they aren’t the right color, they may be too yellow or to orange so they don’t match my skin tone. Or it takes so much product that you fee like you have a large amount of makeup on just for concealer.  

That is Until NOW!!! I’ve finally found a concealer that meets all of my requirements. The cosmetic company Senegence just released their new concealers about two weeks ago. They come in three colors which should cover just about everyone. They come in light medium and deep (we also have natural and green concealers available in the same new formula). Being that I am Casper the ghost pale,  I chose the light. I was thrilled when it arrived, not only is the color fantastic but the consistency is so creamy and wonderful!  And for the first time since I started wearing makeup I don’t feel like I have to cake on layer after layer of concealer just to cover the bags under my eyes or the redness in my cheeks! A task that is nearly impossible for most makeup to complete. This new concealer actually covers everything well enough that I would feel confident applying this and only this and leaving the house.  Here are some before and after pictures so you can see my results from applying one layer of concealer to my problem areas!!As you can see it does a phenomenal job and is at a great price point of $25.00. And you only need a small amount so this small sewing tube will last a LONG time!  (That of course is depending on how much produvtvyoubyse each time!). I would definitely give this product a 5 ⭐️ star review!! If you are looking for a new concealer you should definitely give this one a try!  

Disclaimer- for those of you who don’t know I am a Senegence distributor. That being said if you have followed me for very long you know I have no problem telling it like it is when reviewing products. Meaning this is a truthful review, not based on my employment!  

Working From Home…,,

Okay so I don’t have a “real” job anymore thanks to my Health. But honestly, what is a “real” job anyway?  Is it real because you have to get dressed, do your hair and look presentable? Is it real because you actually leave the house to do said job? Is it real because you have coworkers that you interact with in person, or because you have an office?  All those things don’t make a job “real.”  They are just things that happen when you have a job OUTSIDE the home.  So does working INSIDE the home make it any less real?!?  Not in my opinion. If you stil get paid and get the requirments met for your specific job it shouldn’t matter where you work. 

According to the Nee York Times last alone nearly 43% of employed Americans were working from home at least part of the time. So now you are probably thinking “Man I need to be one of those people!  But what kind of jobs allow one to work from home?”  Well according to the same article the following industries allow work from home. 

Finance/insurance/real estate, Transportation, Manufacturing or construction, Retail, Healthcare, Computer/information, systems/mathematical, Law or public policy, Arts/design/entertainment/ sports/media, Community/social services, Science/engineering/ architecture, Education/training/library 

Working from home sounds all wonderful and grand.  But it to has its fair share of downsides as well.  The biggest downside  being how easy it is to get distracted when your in your own home. Where the dryer may buzz or the dishwasher ding. Or that show you’ve been trying to catch is finally on when you can catch it.  And if you are a parent you may not have a babysitter on the days you are at home. So you may have children climbing on you, asking for food or a drink, needing a diaper changed. Etc.  Sure you think oh if I was working from home I wouldn’t let myself get distracted but that’s much easier said than done. 

Many say being a Stay at home MOM isn’t a job. But it’s a FULL TIME job in my eyes. When you are meeting every need of you child/children and your spouse. While keeping a clean house, cooking dinner, doing laundry and doing all the things that need to be done in the house. You are busy ALL the time. You may not get paid financially, but in hugs, slobbery kisses and I love you’s for the kids. In my mind having never been a mom those positive affirmations and love from your kids and spouse is just like a pay check (minus The money of course). That being said being a stay at home mom is in my eyes a full time job!!!!

I suppose selling Senegence/Lipsense via social media, co-managing an online chronic illness support group and  blogging are not considered working to some. But the cosmetic company is what pays my bills.  Since my accident I really haven’t been cleared to work and have no means to get to an outside job currently.  Due to the fact that I can no longer drive, and shouldn’t be walking long distances on my own. So I had to get creative. I had to find a way to pay the important bills.  Do I get the luxuries now that I did when I worked outside the home? Absolutely not! But I have the enssnetials and that’s what matters. 

The other bonus to working the jobs I do  are simple. I can rest when I need to and for as long as I need to. Because I am often totally exhausted and need to sleep a LOT. If for some reason I am hospitalized (which seems to happen at least 3-4x annually for me) my work will wait for me till I am better. And as corny as if may sound, One of the biggest benefits I’ve found is that I have found a true sisterhood with Senegence, unlike any other company I’ve worked for. The are so sweet and have the biggest hearts and will always help when I need it. It’s truly like anything I’ve ever experienced. 

Do I, or am I able to work everyday? NO, absolutely not.   There may be days or weeks when I don’t work. And that’s okay!! Because my health comes first. And some days I may only work an hour or less because I feel poorly. And that’s okay too. My senesister will make sure by business doesn’t suffer. My co/administrators will make sure the support group continues along without issue. And my blog….. well if I haven’t written in advance it will wait patiently until I return. 

Yes, working any job from home has its benefits but there are also disadvantages. What could they possibly be you are probably thinking.  To me the biggest disadvantage is that  you don’t have the daily interaction with people right in front of you like you do when working out of the home. You don’t have that comraderie that you build with your coworkers when you have a job outside the home.  And you may feel lonely or even depressed. There is a big difference in talking to people and building that team relationship in person as opposed to over the phone or internet. And you don’t get that a lot of one-on-one personal interaction when working from home. Simply because most of your communication is over the phone or internet.  But sadly, that’s just something you have to get used to when you are no longer able to work outside the home. 

Working in the home had its advantages and disadvantages like described above. And it’s not for everyone. But once you’ve lost the ability to work outside the home due to issues like health issues,  and still have bills to pay, you have to get creative. And you may even find yourself doing something you never thought you would. That being said working for Senegence has been such a blessing, even though it’s something I never thought I would do. When I was working outside the home, I signed up with Senegence just to get a discount off products. But then ended up needing an income of some kind and this fell in my lap. I would highly highly recommend any lady (or man) who enjoys or has a passion for makeup, and needs any level of income to look into Senegence. It’s not your typical MLM( if it was I wouldn’t be working for them) they treat everyone so great and they are not afraid to let it known that everyone could have a 5 figure monthly income if they work work their business right!  I am far from that and probably won’t ever get there, but I am just so glad I found this opportunity so I can work From home. 

Amber 
References:

https://mobile.nytimes.com/2017/02/15/us/remote-workers-work-from-home.html

My Senegence Page: https://m.facebook.com/groups/1426452860768009?ref=bookmarks

Senegence home page; https://www.senegence.com/SeneSite/Home.aspx

Support Group: Lupie Groupies on Facebook!

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

    Book Review: The Truth We Bury

    I’ve read Barbara Taylor Sissel’s writing before, but this time she really outdid herself!  After reading the preview I was so excited. I haven’t read a murder mystery that has really held my attention in a LONG time. But this book did that and more!!! Barbara made the characters so relatable and you really felt like you were right there in the book with characters. Each chapter kept you drawn in and wanting More!  

    The way Barbara writes is truly amazing to me. She gives you just enough information that you think you know what is going on but in the end you really have no idea.  Her plot lines are amazing. And the character definition as I mentioned above left you feeling like you really knew the characters and could be friends with them!  Each character was well developed and had their qualities that you liked and even most had some qualities that you didn’t like. Barbara has a way of making her chatevyers likable and hateable all at the same time. 

    In the end I was shocked with the ending. I never saw that coming! But in my opinion that’s how a good mystery should read. I like being able to decide what I thought happened and then find out that I couldn’t have been more wrong!!!  Overall I would give this book 4 out of 4 stars.  This is by far one of my favorite books of this year. And I can’t wait for. The author to put out more great books!! 

    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.  

    Change…. How Do You Deal With It? 

    Change is hard. That’s just all there is to it!  No change is easy. At least not for me. But lately it seems like there have been so many changes in my life that I’ve just had to pull myself up by my boot straps and go on. The accident caused most of those changes! It’s amazing how something that happened in probably less than 30 seconds can cause such great upheaval in a persons life. But it does. And there isn’t a darn thing that can be done about it. Change is inevitable not just in my life at this time, but in everyone’s life. 

    In the last five years, or more specifically even in the last month and a half, I could have dug my heels in and said no more. I have faced more change in a short time than most face in a lifetime. And don’t get me wrong many times I have wallowed and cried and said that I refused to deal with whatever was happening. But like we all know this doesn’t help!!! It may feel like in the moment that crying and wallowing helps but it doesn’t in the long run!!! I’ve learned the hard way that when we are faced with change and adversity we just have to face it head on.  Look it in the face and deal with what’s at hand. 

    However, it’s not just me that is going through or facing change. As I look at the lives of those around me many of them are dealing with big change as well. Whether it be a new spouse, a new baby, a new house, a new job etc. A lot of them are dealing with some change.  My sister is the best example of life altering change. She is finishing up her highschool career. And she has started to experience the “lasts.”  Like for instance she had her LAST home game on her highschool softball team. She will never play another home game there. And today was their LAST practice. Outwardly she is handling these things like a champ. While inwardly there has to be some emotion there surrounding these events.  Lasts are hard but we have to have the last of something before we can have the first of the next chapter in our lives. 

    Throughout life like I said before change is inevitable. It’s going to happen. Sometimes it’s for the best and sometimes it just has to happen. But it’s all in how we handle the change that really makes the difference. If we are able to walk through change with grace and our head held high things will generally turn out better for us in the long run. On the flip side if we wallow, and cry and drag our feet change is going to be hard. Not only for the person dealing with the change primarily but for all those around them.  And no one wants to be around that person who is stuck in the past refusing to let go of things that cannot be changed. 

    In the end it’s all about how we focus our energy. Do we focus on the future or continue to be stuck in the past?  Can we let go of the old and open the gates for whatever new might be on its way into our lives? Those are the essential issues with change. We as a society seem to have a problem letting go of the past and moving forward. We seem to want to focus on what has happened before rather than thinking about what we do now and how it will effect the future. Not just for us living now but also for those coming behind us!  Socrates said it best,  “The secret of change is to focus all of your energy not on fighting the the old, but on building the new.”