My Feelings About Raising Awareness

Every year around this time you see all sorts of things posted on just about every social media platforms about Lupus awareness. And I think that is all good and well. But why do we do this just in May? I want to know what all these people who come out if the wood work in May, are doing the rest of the year to raise awareness. And while I understand many may be doing things behind the scenes and not on social media. Don’t get me wrong i am so super grateful for that. The thing that bothers me is that it’s not just May when we need to start raising awareness it is ALL YEAR LONG!

Those of us who suffer with lupus, or really any chronic condition, doesn’t suffer for just one month a year. And if there are people out there like that who do I want to meet them. I’m sure as you are reading this you are wondering where the heck I’m headed. My point today is simple, we can’t raise money and advocate one month out of the year and expect change. We can’t raise money and advocate one month a year and expect more research to be done. We can’t raise money and advocate one month a year and expect a CURE!!!

I know, raising money or advocating publicly is not for everyone and I’m

okay with that. I know not every person is going to have social media platforms where they can go to advocate, ask for support and money. And that to is okay with me. Some people don’t like their health issues to be known publicly and again that is fine with me. It’s not for everyone. Our differences and preferences are what make the world go round.

My problem stems from those who only spread awareness and advocate for their “life altering” condition during the month that is commonly used to spread awareness for their condition. While, yes raising money and awareness one month a year is better than never doing those things. I’ll give you that! It is the people who complain about the lack of new treatments or the current opioid issue that is impacting many chronically ill across the country and sit there and do nothing. They don’t do any research on ways to advocate, they don’t reach out to their city council or legislature. They just want to do nothing and expect great changes to come. Sadly, that’s not the way things work. If you aren’t happy with your treatment or the research being done for your condition you have to get out there and be proactive.

I know, some of you are thinking but Amber I can hardly get out of bed most days how on earth can I help spread awareness or raise money??

Well, that’s simple you have to do what you can from where you can. Meaning if you can’t get out of bed very often but you can use your phone, tablet or computer while in bed. That’s great, while you are in bed using said device email your city or state officials. Tell them your story and how you and your friends and families would be directly impacted by getting more more to spend on quality research. Or you are thinking, Amber I don’t feel comfortable sharing my story on social media, many of my close friends and family don’t even really know what is going on with me. Well, that’s your first step. Open up to your family and friends. Let them into your world and let them see what happens in your world on a daily, weekly, monthly basis! I know, we all have friends who wouldn’t give a flying flip if we told them what we are going through. But generally speaking we have more people in our lives who do care and who do want to know what’s going on than those who don’t.

Basically what I’m saying is START SOMEWHERE! The future will never change if we can’t openly share the present! The Lupus Foundation of America estimates that there are approximately 1.5 million Americans, and approximately 5 million people worldwide who have Lupus. Another site estimates that there are nearly 200,000 new cases of lupus annually. I chose to tell you this for one simple reason. If each of those five million people would spend one day every year spreading awareness and raising money for research just imagine the things that could be done. The new medical trials that could be running. We could really be working toward a cure.

Sadly, this isn’t happening and I and going to guess it never will! So what I really am saying is if you have the ability to help spread awareness of your condition, even if it’s just posting a silly meme on social media that doesn’t directly show what’s going on with you. DO IT! Tell one person you know that doesn’t know what’s going on in your life. Just spread the word. The more we can spread awareness of this debilitating disease the BETTER!! By doing this I hope that one day we will find a cure!!

**Remember these are MY feelings, not meant to upset anyone, just me sharing how I feel on this topic

With Love,

Amber

What You Should Know About Allergies

Most would agree that some years are worse than others, and this year Nany feel like their allergies are going to get the best of them. Even though we have seen just about every kind of weather possible this “spring,” (I won’t call it spring yet!) everything seems to be blooming already. That means that for those who suffer with allergies and chronic sinus infections, this time of year (and fall) can be very frustrating and miserable. Allergies are not classified routinely looked at or classified as a debilitating illness. However, like many others i have talked to this spring, I am starting to feel like it possibly could be in that classification. I have been doing some research on this topic the last week or more, so I wanted to share a few of the things I’ve learned.

It seems that the best place to start this article is to start with a few definitions. I want to provide knowledge for those who may not suffer or those who may not be aware of what allergies are or can be! So let’s start with what an allergy is. By definition- an allergy is when a person’s immune system reacts to some kind of foreign substance, that is know as an allergen. An allergen could be things that can be eaten, inhaled into your lungs, touched, or injected into your body! Specific response can cause anything from sneezing, itchy eyes, a runny nose all the way to severe reactions that cause hives, low blood pressure, trouble breathing and even death! Examples of possible allergens are dust, mold, trees, grass, ragweed, pollen and food allergens such as milk, egg, soy, wheat, nuts it fish proteins.

How many people suffer from allergies every year?!? Any guesses? I was shocked to find out that allergies have been found to be the SIXTH leading cause of Chronic Illness in the US alone. This can lead to an annual cost healthcare costs of an excess of $18 BILLION dollars. It is estimated that 40- 50 MILLION Americans have allergies of some kind every year!! People of all ages can struggle with asthma, allergic rhinitis, food allergies, and eczema. Asthma is said to affect more than 24 million people in the US, including more than 6 million kids.

I’m just guessing that everyone could probably name at least 5 people right off the top of your head if you were asked who you know that suffers from allergies!! One would think that due to the fact that so many million people suffer with allergies that is would be easily treated by any medical provider. While that may be true for the every day Joe who suffers from seasonal allergies. But for those who have severe allergies that don’t respond to the over the counter meds and treatment, or has allergy based asthma, a specialized doctor is necessary. A doctor who specializes in allergies and asthma would be the best person to see. Simply because these providers received specialized education and training in these conditions. They are able to perform allergy testing, accurately diagnose your symptoms, and develop a personalized diagnosis for your specific allergies and conditions.

There are two key steps in diagnosing your allergies. One would be to take a full and thorough medical history, and the the second would be doing actually allergy testing. You are probably wondering why a full medical history would be important. That’s simply because when it comes to HUMAN allergies the person’s medical history is just as important as the actual testing. The history provides a link between the test results and the actual allergies. The history can help the provider to see what allergies your family might have and to see what certain medications, in or outside settings or food seems to make your symptoms worse. While the provider is taking your history you might be asked about the following:

  • Your overall health
  • Your symptoms and if your immediate family have asthma or allergies such as skin rashes, eczema, hives or hay fever.
  • Your symptoms. They provider will most likely want to know when your symptoms occur( what you are doing and where you are at), how often they happen, what brings them on and what if anything makes your symptoms better. The allergist may also want to know about your home and work environments and eating habits to see if they might lead to your exact allergies.

After the provider has taken a very thorough history, testing will most likely be done. Allergy testing has become the gold standard in the diagnosis of allergies. Blood and skin tests are used to detect a person’s sensitivity to common allergens. They can show allergies to things like pollen, dust mites, animals, ragweed, certain foods, latex, certain trees or plants. In most cases skin tests have proven to be the most accurate and preferred way to diagnose a person’s allergies. Blood tests are generally ordered less often, but they could be used in cases of severe skin rashes, or if the person can not stop a medication that can possibly interferes with the skin testing. Allergy tests basically give reliable results that confirm information that the provider gathered while taking the medical history.

After you’ve had a positive allergy test and you and your provider are aware of what allergens you react to, it is time to develop an individual plan of care. According to the Allergy and Asthma Foundation of America there are many options for treatment depending on the specific allergy and the severity of the allergy/reaction. The foundation states that the treatment of allergies can include: avoiding allergens, medication options and immunotherapy (which can be given as a shot or a tablet placed under the tongue.

You may be thinking what I was when I read through my research, HOW ON EARTH DO I AVOID ALL ALLERGENS THAT IMPACT ME?!?!? That being said the AAFA says that the best way for a person with allergies to prevent allergy symptoms and decreased the required amount of medications is to AVOID your allergens as often as possible. They say that doing this can include removing the source of allergens from home and other places you spend large amounts of time. So if you are allergic to pet dander either remove said pet from the inside of the house or look for hypoallergenic types of animals. They also suggest routine nasal washings to help reduce symptoms brought on by airborne allergens. This can be done by doing a nasal saline rinse using a squeeze bottle or Neti Pot. (Side note if you are going to do nasal rinses you should always use only bottled water or boiled tap water. Never tap water that hasn’t been boiled)

If the avoidance technique does not work for you, there are medications available. Not everyone is okay with taking anything for allergies, simply because they don’t think it’s a big deal. However, not treating your allergies can turn into much bigger and more painful issues like sinus & ear infections. Below you will find a list of classes if medication that can be taken to help with allergy symptoms.

  • Nasal Corticosteroids, aka nose spray- Work by reducing swelling which can cause a stuffy, runny, itchy nose. This option is the most effective for those suffering from nasal allergies.
  • Antihistamines- Do just what the name says. They block histamine which is a trigger for allergic swelling. This type of meds may reduce sneezing, itchy runny noses and hives. These meds come in a variety of forms, and often time can be found over the counter as pills, liquids, melting tabs, creams or nose spray.
  • Mast cell stabilizers – This classification of meds work by keeping your body from releasing histamine (that is a cause of allergies). By blocking the production it helps with itchy, watery eyes, or an itchy, runny nose! This group is available as eye drops or nose sprays.
  • Decongestants – This group of meds works by reducing stuffiness by shrinking swollen membranes in the nose. One has to be cautious with these meds. As they can, if used more than prescribed, cause the stuffiness and swelling in the nose to worsen.
  • Corticosteroid creams &/or ointments – These products relieves itchiness and can prevent rashes from spreading.
  • Oral Corticosteroids- This type of medication has to be prescribed and may be used to reduce swelling and stop severe allergic reactions. These medications do have well known side effects so be sure to talk to your doctor or your pharmacist.
  • Epinephrine – This comes as pre-measured and also self injectable devices. This is the most important medicine to give during a severe allergic reactions (aka anaphylaxis). For this medicine to work properly it must be given/taken within minutes of the first sight of a serious allergic reaction. If you know you have a severe allergy to food, any kind of stinging insect, latex or medications, you need to make sure you always carry EPI pen with you. And that friends/family know how to use it if you are unable to.

Another method of treatment for allergies is Immunotherapy. Currently there are two types of immunotherapy that can be used to treat allergies. They are allergy shots and sublingual immunotherapy (SLIT)

  • Allergy Shots- This method of treatment involves giving injections of allergens in increasing doses over a long period of time. By doing this the person receiving the shots progressively becomes less sensitive to the allergens given in the shot! Allergy shots work best for those who have allergies to pollen, pets, dust, bees and other stinging insects and asthma. However, those who have allergies to food, feathers, hives or eczema will not likely to respond well to shots.
  • SLIT – This is another method for treating certain allergies without injections. When using this modality for treatment, an allergist will give patients small doses of an allergen under the tongue. Over time the exposure will improve tolerance to the the allergens thus reducing symptoms. This method overall is fairly safe and effective for treating nasal allergies and asthma. Currently SLIT is only available for the treatment of dust mites, grass and ragweed!

I don’t know about you but I am feeling a little overloaded at the moment. I have provided you with lots of information on allergies. I hope that my research has provided you with more information about allergies, treatment and diagnosis. I know I learned a lot. I must include this disclaimer, the information provided in this article is just for self education and gaining knowledge about allergies. That being said you should never start a new treatment method without first speaking with your doctor or getting a referral to an allergist. It is a fair assessment that many people will suffer from some kind of allergy during their lifetime. However, like most medical conditions everyone’s journey with their allergies will be different. And what treatment works for you may not work for Your kids. While doing research for this article I came across The American College of Allergies, Asthma and Immunology. They have a fabulous website that provides so much great information and is easy to understand. Click the link above if you want to learn more.

If you have any questions or comments on this post feel free to share them in the comment section below. And feel free to share with anyone who might benefit.

With Love,

Amber

SENEGENCE Skin Care Review

Skin Care….. what is the first thing that pops in your head when you hear (or read)?! For me it’s the thought of how expensive really good skin care (and makeup as well) is going to be. But the saying that you get what you pay for is TOTALLY true! When you buy and use the over the counter (in most cases) or drug store products you truly are getting what you pay for. In general cases using drug store makeup &/or skincare product, will not help you reach the goal of having a clear complexion and no blemishes. I know it’s possible for some. But most women would agree with me when I say that any item you buy cheap skincare you get a “cheaper” benefits.

Up until about a year ago I was the person who felt like the cheaper the better (for my pocketbook anyway). But that all changed when I found Senegence Skin Care. I saw the price and was like this must work miracles for the price. I went ahead and put those thoughts to the back and started using the skin care line. I started slow and just bought the 3~in~1 normal to dry skin care and the daytime moisturizer. I figured that was a good place to stop and should wait a little bit so my skin didn’t freak out! I got into the routine and started using both morning and evening, by a month later I was seeing some MAJOR difference. You can see in the pictures.

In the picture on the left you can see how uneven my skin tone was and it’s hard to see but I have a few small pimples and chin. The right was taken about 10 days following the regimen of using the products two time a day!! I know use Senegence entire skin care line. And I can’t say enough good things about it. You can see in the photos below how well it has worked for others as well.

After looking at my before and after pictures I knew I had found my product! Before using the OTC products my skin was uneven and the tone wasn’t consistent. My younger sister has started using the skin care product line as well and it has completely changed her skin. She used to constantly be breaking out and now she only breaks out occasions and usually because she has been eating chocolate or is really stressed.

The saying “You get what you pay for !” as I mentioned above is really true when it comes to Makeup and skincare. Most products you buy over the counter are not going to be good for your skin. I’m not saying they are all bad but most wont do what you need them to do. If you use over the counter products I recommend doing your research and figuring out which products are going to be the best for your skin!! You only get one face so protect it and use good products so it will be nice looking and feeling for your entire life!! If you have any questions about what the skin care line let me know.

With Love,

Amber

Why Is Sleep So Important?!?

Sleep…. sleep…..sleep. It’s all my doctors seem to want to talk about these days. I can count on every doctor I see to ask me how I’m sleeping. When I tell them the truth I always get THAT LOOK! A look I’m sure anyone with a chronic illness/pain is used to seeing. Then they proceed to tell me why I need to sleep more. That being said I’ve always wondered how much of a difference sleep really makes. And why it is so much more important for us (the chronically ill and those with chronic pain) than other people. So I decided I would do some research and pass on what I found to you guys!!

The 2015 Sleep in America Poll found that 21% of Americans deal with chronic pain, along with 36% who suffered, in a period recent to the time of survey, from acute pain. That shows that only 43% of the population report being pain free. Pain joins with stress and poor health in general equals poor sleep, shorter duration of sleep and poor sleep quality! The people who suffer from either acute or chronic pain are more likely to have problems sleeping that will impact their daily lives. More than half of the people with chronic pain and were part of the poll say that sleep difficulties have or will interfere with their work. That. Number drops under 25% for those who have no pain. Those with pain also report that lack of sleep often Interferes with their mood, the activities they may take part in, relationships and overall enjoyment of life.

People with chronic pain also feel that they have less control of their sleep, the report that worry more about lack of sleep could affect their health. This group of people also say that they are more likely to have their sleep impacted by environmental factors that make it more difficult to get a good night sleep. These could be things like noise, light, temperature, mattress or even the person who they share the bedroom with. Just to give you an idea the survey indicates that sleep is a significant problem for those with chronic pain. The statistics don’t lie. It showed that almost one in four people with chronic pain (23%) said that they have been diagnosed with some kind of sleep disorder by a dr. That is compared to just six percent of those who don’t have any issues with pain.

These statistics above show what we all know. They show that those with chronic pain issues don’t sleep well. But why is it so important?!? Some doctors feel that the duration and quality of sleep should be considered a vital sign, because both are known to be strong indicators of qualify of life and overall Health. It is recommended that a person gets 7-9 hours of sleep a night. The importance of good sleep should never be underestimated. Sleep deprivation has been clearly linked to increased rates of obesity and increased body fat. Along with a compromise immune system, and even diabetes. Research shows that a full nights sleep (7-9 hours) is essential to help the body repair and rejuvenate. Lack of sleep has been linked to poor performance on the job and very slowed reflexes behind the wheel. A non-restorative sleep pattern can potentially cause diminished energy, depressed moods, fatigue and along with experiencing more pain. That being said new research is showing that getting a full night of sleep can not only help you be more alert and it can also reduce inflammation and pain. Basically the takeaway from this is that sleep deprivation and poor sleep along with chronic pain are part of a vicious cycle, that can be hard to break.

The good news they say, is that sleep deficits can be remedied easily and the effects of lack asleep can be reversed. There are specific ways to improve your sleep hygiene that can give you immediate rewards. The American Sleep Association there are some steps that one can take to make sure that you can get better sleep. These steps are done to help you wake up feeling refreshed and energized for your day!

The following are steps recommended by the American Sleep Association(ASA):

  1. Keep the room cool- In General when we sleep our body temperature drops. So it is recommended that you keep your bedroom around 65 degrees. That is so you can add blankets. The drop in body temp signals your body that is time to sleep!
  2. Go to bed earlier- Just like kiddos, adults can get over tired and won’t be able to fall asleep. Also for those who like to stay up late and sleep fewer hours research has shown that those who keep that as part of their routine oftentimes report more negative thoughts and more pain.
  3. Stay on Schedule- In order to help your body get used to sleep, try to go to bed and get up at the same time. By doing this your body will get used to this rhythm. This making sleep somewhat easier.
  4. No Naps- This is a very debated topic. That being said the ASA says that nap decrease the “sleep debt” that makes it harder to fall asleep at night. So by napping during the day you increase the odds that you will have trouble falling asleep and/or staying asleep!
  5. Turn off screens- Turning off all kinds of sleep a couple hours before bedtime for all ages allows the body and brain to settle down and shift into sleep mode.
  6. Make the bedroom only for sleep and intimacy- In today’s society the bedroom have become multifunctional. It is no longer just for sleep, it is used by some as their office, or a place to workout or a movie theater of sorts. By making your bedroom uni-functional it will make it easier to sleep there. It’s hard to relax and go to sleep when you can see your desk piled high with tasks that need to be completed. By making the bed and bedroom just for sleep one can hope that your brain will subconsciously associate being in the bed or bedroom with being asleep. They also say that one shouldn’t lay in bed and surf their phones, watch TV or even read. They suggest sitting in a chair in the bedroom to do those tasks and crawl into bed only when you are feeling sleepy.
  7. No caffeine or other stimulants after noon – in order to get better sleep it’s best to avoid any caffeinated beverages, cigarettes and alcohol after noon. By doing so it is hoped that your body & mind will be able to wind down and sleep when it’s time for bed.

Let me be real and honestly say I don’t think that this is something easily changed or reversed. As someone who has suffered with insomnia for many years and have made many of these changes through the years. And I just don’t see the great change in my sleep by doing so. That being said these tips may benefit one of you reading this greatly. So I feel like even if it hasn’t helped me I want to share this information with others in hope that it can help someone else. By doing this research I was able to see the dangers that can come from not sleeping. This the importance of getting a good nights sleep every night. So I am willing to make these changes once again and see if it is beneficial to me. I will try the tips listed above for a month or so and report back to you all as to whether or not they have improved my sleep!

Finally take a moment to look at the graphic below. It shows some Interesting information on this topic. Graphic is from the National Sleep Foundation.

With Love,

Amber

Resources

https://www.spine-health.com/wellness/sleep/chronic-pain-and-insomnia-breaking-cycle

Better Sleep Guide

https://www.sleepassociation.org/sleep-disorders-n/insomnia/amp/

Don’t Leave Me Out

If I had a dime for every time I’ve been told by a friend or family member that they didn’t want to tell me something or invite me to something because I’m sick, I would be RICH!! I’ve been left out of all kinds of news and events over the last few years! News about a new baby or a new job, or that someone lost a job or was struggling with something, or being left out of a fun night out. All because I am sick. I know that my friends had the best of intentions, but I’m just a normal person! I can handle anything you don’t want to tell me. In fact I am more impacted when I am left out more than when they share worrisome news.

Yes, it’s true I have chronic conditions, some of which are impacted by stress, but it’s my stress not your stres. Just because you are stressed over your news doesn’t mean I will be. I totally understand why people don’t always share their news with me. They think by not telling me it will protect me from undue stress. When in reality not telling me makes me worry more and tends to make me more upset. I may start to worry that we aren’t friends anymore or that you are angry with me for some reason! Learning that I wasn’t told makes me feel like I was never given the opportunity to share in your good news or support you through the bad.

Just because I am sick doesn’t mean I don’t want to know all the things about my friends. It also doesn’t mean I can’t be happy for them. For instance, I know some people who feel that those who can’t have kids wouldn’t want to be told about a new pregnancy. They assume that by telling me that it will make me sad and frustrated. It’s true that I will probably never be able to carry and give birth to my own kiddo, but I’ve come to terms with that. While I may be slightly sad when you tell me you are pregnant, that doesn’t mean I can’t be happy and excited for you!! I still want to attend baby showers and buy the baby gifts. And I will always want to snuggle with a brand new baby!! I understand the reason for not sharing but PLEASE don’t leave me out!!

Don’t leave me out when you are making plans for a girls night out either. I may not be able to attend because of a migraine or a respiratory infection or a flare. But I still want to be invited. Finding out via social media that you’ve had something exciting happen or that you had a night out and didn’t tell me, makes me feel bad. I would much rather hear your good news from you than second hand or from social media. It’s much more sad and hurtful to find out that something big is going on with you and I didn’t hear it from you!

I know that chronic conditions aren’t always understood. People don’t know what might make your condition flare or what increases your stress. And that’s okay, I personally don’t expect them to. That being said, never hesitate to ask me about my condition. I will always be glad to tell you about it and what impacts it!! I will always be real with you as well! I won’t make excuses to not see you or go to dinner, I promise to always tell you what’s really going on. And please don’t feel like you can’t tell me something because I am sick!! Even at my worst I will still be excited or happy for you. Or help you talk through something you are going through. Above all I am still me, I am just me with an illness

With Love,

Amber

Dear World….

Hello world! This one is for YOU!!

No matter how hard we try there are always going to be some level of judgement within. But most of us keep that judgement to ourselves, and don’t stare people down or make comments when we think they shouldn’t be using that wheelchair, or parking in a handicapped spot or even just wearing a mask out in public. That being said many people don’t keep those judgments to them self and they make the rudest comments. Today this post is directed to those who can’t keep their judgments to themselves.

Yes, I know what you are thinking when you see me get out of the car that I just parked in a handicap spot. You look me up and down and then proceed to think, “There’s nothing wrong with her why would she park there!” And some will even glare or make comments. By looking at me all you see is what looks like a healthy lady in her thirties who’s only issue is that she is overweight! However, you CAN’T see my Illness! It’s INVISIBLE!! Meaning you may not be able to tell I have anything wrong by seeing me or even talking with me, unless I’m wearing a mask, or limping or even wearing sunglasses inside or using a cane or wheelchair. Otherwise there is no physical manifestation you will see!

You don’t know that even getting out of bed is hard. Getting dressed and ready is exhausting. And could take several hours just to get to point of walking out the door. Due to needing to take multiple periods of rest! By the time we finally make it to wherever we are going, whether it be a restaurant or a place to shop, we have no energy or spoons left AT ALL! You can’t see that it’s hard to breath, and my heart is beating way faster than it should. You can’t see the HORRIBLE migraine I am suffering from. Or know that the lights in the store or from the sun are making my head hurt that much worse. Or that the urge to vomit from said headache gets stronger with every step and movement!! But yet you continue to whisper and make comments and stare me down.

You don’t know that I woke up with a pain level of 8 and even after taking my prescribed dose of medication. I am still at a 7. You can’t see that every step is agony and every time I have to grab the cart to push it in the grocery store, that pain radiates through all my fingers, hands and up my arm! You can’t see the pain that is in my back and pulsating with every movement. Yet you still continue to stare and make comments and judgements.

You also don’t understand pain meds. You don’t understand that we would all rather do anything else than take pain meds. And NO most of us are not addicts and should not be treated like we are. If 99% of you were in our shoes you couldn’t do half of what we do. Because we have gotten used to the pain and know that I can’t stay home in bed just because I hurt. Because, if I did that I would never leave the house!!

I love when you see my mask and you turn around and go the other way because you are fearful for CATCHING WHAT I HAVE. Well, in this case the JOKES ON YOU!! The situation is actually the opposite. I wear this mask to prevent CATCHING what YOU have! You don’t know and can’t see it, but my immune system is to busy fighting off my body to worry about fighting off any germs i in contact with. What you may think is a just a small cold for you, could potentially put me in the hospital or even kill me! So I have to protect myself from you and the world!

And you will never understand what it’s like to have to stay in your home for weeks on end because the flu is running rampant in your area! What it’s like when you see people on social media and wish you could be out having fun. While instead you are stuck in your home because the flu for someone like me with Lupus could KILL ME!

The public will never understand the invisible illnesses. In general people will forever think that if there is no outward sign of illness, or pain (like a cast on a leg or a person on oxygen) they will most like assume that you are fine…..JUST LAZY! Which couldn’t be further from the truth. That has been the thought process for many many years and it will be hard to change. In general, the public doesn’t understand any illness that they can’t see. And we understand that. What we don’t understand is the need to make hateful and judgemental statements. How does that help in any situation?!?

I’m going to wrap this up with a few statistics for you regarding the invisible illness. And give you something to think about. Approximately 10% of Americans have a medical condition that could be defined as an invisible disability. And 96% of people with chronic medical issues, live with a condition which is INVISIBLE!! And most of those people don’t use a cane or assistive device that would show they are ill.

Perhaps after reading this someone will think before they judge! Hopefully, they will hold their tongue before making a rude and hateful comment. I know that’s wishful thinking, but I would hope that seeing this Information would make them think. If this reaches just ONE person who will change their thoughts about people using handicap spots or a wheelchair than I’ve done my job!!

With Love,

Amber

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

The Things I Wish Someone Would Have Told Me

Even though I’ve been diagnosed with Lupus, Fibromyalgia, and Endometriosis there are still things I come across that I wish someone would have told me about. You all know what I’m talking about, those little “tricks of the trade” that people who have been dealing with that condition for awhile and no one shares with the newbie. So after having a discussion with several people across several different groups, I have complied a list of things by asking others who have autoimmune illnesses. The list we complied could apply to anyone, not just me, but could change the way you do or look at things!!

-I wish someone would have been honest with me and told me that it may take MONTHS or YEARS to accept the changes brought forth by the illness. If you can ever truly accept the changes.

-I wish someone would have made it more clear that this is not something you can adjust to overnight! It may take a lifetime to fully adjust to the changes in your body, your energy level and your fatigue.

-I wish someone would have mentioned the depression that happens as you start to really accept the changes in your life is real. As well as made it clear that is is okay for you to feel that way! And suggested early on that seeing a counselor might be a good idea. 

-I wish someone would have prepared me for the fact that there is a very good chance that you won’t make a LOT of the plans you schedule, due to your health. Even if it was something you planned and were looking forward to. You just may not make it!! And in most cases your friends will never understand why you can’t just get up and go.

-I wish someone would have prepared me for the fact that not all Rheumatologist’s (or other drs for that matter) know much about Lupus or the way to treat it. And most even if they are familiar may not know the newest meds or what’s really best for each individual patient.

-I wish someone would have reminded me that no one will understand what is happening to me, and no one will stand up for me like I will. I MUST ADVOCATE FOR MYSELF AT ALL TIMES!!! (As do each of you reading this!)

-I wish someone would have told me that anytime I go to the dr or the ER with a pain related issue that I am most likely going to be treated like a DRUG SEEKER!  Whether I am or not. The drs don’t care. They just go off what they see before even talking to the patient!!!

-It would have been great to know that many of my friends and some of my family would turn their back on me and simply walk away! Because they don’t understand the changes in my life or just simply can’t handle it.

-I wish someone would have prepared me for the pain I would feel, not only from Lupus & Fibromyalgia, but also from Interstitial Cystitis and Endometriosis!

-I wish I had been prepared for the fatigue that Lupus brings on. It’s not like any fatigue I have felt before. It can honestly be totally disabling.

-I wish someone would have prepared me for the cost (even after insurance) that I will have to deal with and pay out of pocket.

  -I wish people understood that exercising and eating better will NOT cure my conditions.

  -I wish someone would have prepared me for how hard it is to keep a full time job doing the things you like once you are diagnosed with a life changing disease!

-I wish someone would have prepared me for all the dumb questions I get based on my conditions. I know people mean well, but their delivery could definitely be worked on.

– I wish someone would have prepared me for all the conditions that would come along after lupus. I had no idea that once Lupus came into my life that he would then invite all of his unwanted friend.

This is just a list of things that was combined from a poll Results from a questionnaire in an autoimmune support group, along with my own thoughts. I know many of you feel this way and could contribute many more points to the list. I hope you enjoyed reading this and it made you think about all the things that you have to deal with. Please feel free to share this with friends, family or others who suffer with chronic illness. And always remember YOU ARE NEVER ALONE IN YOUR JOURNEY!! There are always many of us out there willing to help and talk you through any struggle!!

With Love,

Amber

You Behind The Illness (tag)

I was tagged by Michelle Munt from JumbledBrain.com. Those of us who are chronic illness bloggers are always focused on spreading awareness and understanding, we sometimes forget to show who we are, not just “what” we are! So this tag is to help us share a bit more about our personalities and give you a better idea of who is behind the blog!! You can read Michelle’s Behind The Illness Post here. I have tagged a few other bloggers on my social media but anyone is more than welcome to take part. Thank you Michelle for nominating me to do this!!

Four places I’ve lived:

  1. Kansas City, MO as a baby and only for a very short time.
  2. Southwest Missouri
  3. Southwest Missouri
  4. Southwest Missouri

So you can tell I haven’t lived very many places. In fact I’ve lived in the same town since we moved from Kansas, City. That being said I’ve moved 11 times and lived in like 9 different homes! Just all in a 15 mile radius of the same town!

Four Places I’ve Worked:

  1. When I started working I was 14. I worked in the summer for a family opened company who ran all the permanent food stands at the local fair grounds. It was Interesting, and I learned many good lessons. But I HATED coming home smelling like a GIANT Corn Dog or Funnel cake.
  2. As I got a little older I spent a year or so during my sophomore and junior year, working as a hostess as the local Applebee’s! There I leaned about how to deal with hostile people and that I NEVER wanted to be a waitress. I was (and still am) far to clumsy for that!!
  3. My next job was at Staples the Office Supply Store, I worked for three years. I kind of did a little bit of everything in those years. My main job was a cashier/customer service rep. But I also worked in the Copy Shop and could do all things that might need to be done back there. I also helped out in all the departments if needed and stocked shelves. I even learned how to work in the cash office and prepare the deposit for the bank. I learned a lot of valuable skills at this job.
  4. My last full-time job was at one of our local hospitals where I worked as a PCA in the earlier years and an RN for the last 9 years. I did everything from bedside patient care to charge nurse on the ward. To pre-admission calls pre-procedure. All which were jobs I enjoyed and am glad I had.

Four favourite hobbies: This one is hard for me to choose my top favorites. So in no kind of order here they are below. I also couldn’t choose just FOUR so I added a couple more!

1. Spreading awareness of many conditions while also teaching others the importance of acting as an advocate for yourself.

2. Writing for my blog and being able to write about chronic illness. As well as talking about beauty products and how women can find themselves again after diagnosis.

3. Running my support group on social media for people with like illnesses! And making lifelong friends in this group!

4. Running my small Business selling Senegence. I get to play with makeup everyday and help women feel more confident in their own skin.

5. Reading, when I can!

6. Spending time with my little sister who is 18 and heading to college in the fall! Also I love spending a lot of time on ballfields watching her play. Sad that this summer will be her last year because she’s. It playing in college.

Four things I like to watch:

  1. I LOVE Grey’s Anatomy.
  2. I watch more reality TV then I would like to admit. I think I watch bc I’m Just shocked how stupid people can act and how these super rich people spend their money.
  3. I also really enjoying watching many VLOGS on YouTube. There are several channels I follow.
  4. I have recently started watching The Resident which I really LIKE. I’m only a couple episodes in and can’t wait to see what happens the rest of the series.

Four things I like to read:

  1. Anything by Barbara Taylor Sissle. Barbara writes with heartfelt emotion and page-turning suspense, her stories focus in ordinary families and what happens when they are abruptly confront with extraordinary circumstances.
  2. Kristin Hannah writes mostly women’s fiction. She has written the feel good books to more historical books. I’ve yet to find a book by her I don’t like.
  3. Jesus Callimg Devotional Books- these are by far the best devotionals written!

4 Other bloggers work – I like to hear about their lives and their health. I also enjoy reading others work because often times something they say will spark and idea for me to write on. And I just learn so much over all from so many different bloggers. Not just Chronic Illness, but beauty and lifestyle and travel!!

Four places I’ve been: Let me preface this by saying I haven’t done a lot of traveling but hope to one day!

  1. Washington D.C. – I think this may be one of my favorite trips. I went when I was a senior in Highschool to march in The Fourth Of July Parade without ha band. The reason it was so cool was that it was the first 4th of July parade in DC since the 9/11 attacks. So that will be a trip I will always remember.
  2. Los Angelos- I traveled there when I was nine. I have such fond memories from that trip. We went to Disney, road a boat from LA out to Catalina Island and I spent a lot of time in the ocean
  3. Charleston SC – I found this trip to be interesting because Charleston has so much history. The historical houses and everything.
  4. Cancun Mexico- This was an amazing trip, we went scuba diving (learned quickly that’s not for me), we went to a local mall for shopping, say some of the historical areas. The resort was fabulous. I would definitely go back with a different travel buddy!!

Four things I love to eat:

  1. Potato’s – I’ve yet to find any version of potato that I don’t like! Mashed, baked, fries, you name it I Love them all!
  2. Cantaloupe & Watermelon- During the summer I can not ever eat enough of these two. I wish they were around and fresh more than just a few months a year!!
  3. Spaghetti/pasta- This is another thing that I’ve yet to find a pasta or spaghetti dish that I didn’t like. Pasta by itself, with sauce and no meat, with meat sauce, with cheese, I LOVE it ALL!!
  4. Sweets- I’ve had to learn self control when it comes to this! But I love cookies, brownies, cakes, cupcakes and ice cream lol. I don’t ever buy any to keep in the house so I don’t have easy access to it. Lol

Four things I love to drink:

  1. Milk- in the weird person that could drink milk all day, with any meal! The only kind of milk I don’t like is Whole Milk.
  2. Water is my main drink. I really don’t drink anything besides milk and water. I know I’m pretty different. I’ve tried tea, coffee, soda, juice and I just don’t care for it!
  3. Hot Chocolate – the only time I drink this is the cool times of the year. I like to add a little milk to it and it’s soooo good!
  4. A Cocktail once in a blue moon! I rarely drink but I do like a good cocktail if I decide to.

Four places I want to visit:

  1. Hawaii – There are just so many gorgeous beaches and so many things to do if you want to. And it’s just gorgeous. What more could you ask for.
  2. Australia – It just blows me away to think that is a place on earth where there are wild Koalas and Kangaroos roam!! And to me that makes it sound amazing.
  3. Canada – I have always wanted to go to Banff, Canada! I’ve seen some videos of people who went and it looks absolutely magical in the winter! And to maybe see Niagara Falls!
  4. France – I probably mostly stay in Paris! Because I love looking at the buildings and castles. As well as the Eiffel Tower!!

I hope you learned a little about me from reading this. As I post this on social media I will tag for more people to do this tag!!

Finding Support

Support is essential when you are living with some kind of chronic illness. When your life changes and your health declines you feel more and more alone. At first your family and friends can’t seem to understand what you are dealing with. They try but in a lot of cases they really can’t understand what we deal with daily unless they live it. Sadly, as your health declines you often lose much of the support you did have, because people either can’t deal with what is going on or get annoyed that you can’t do the things you used to do. So where do you find support? Where can you find people who can sympathize with what you are dealing with?!?

Now days you can find just about anything on the Internet, including support. By doing a simple search on any web browser or on Facebook you can find a multitude of online support groups. A group can be found for just about every condition or diagnosis. But just because they are out there doesn’t mean they are helpful. An article written in 2011 for Science Daily stated that after a year of research the participants found less support from Online Support Groups than they did from in person support groups. But really it comes down to what suits your needs best. If you can find a group where you can make personal connections and feel like you can truly open up then you will gain from being part of that group. Whether its online or in person.

If you visit the LFA website (Lupus Foundation of America) you can find a page just for research and information on your condition. There are tabs for newly diagnosed patients, a tab for children and teens, a tab for caregivers and even information for healthcare professionals. This can be helpful for everyone, they can find any kind of information that they are looking for that helps to understand the condition you are dealing with. Also on this page there is a link to help you find a chapter in your area that may have support groups. I was a facilitator for the local chapter in my area for awhile. Sadly, the chapter eventually closed even though I live in the third biggest city in our state due to lack of interest. A lot of people do not even know that groups like this exist. Despite our efforts to spread the word we were never able to grow the group enough to keep it going.

If you are looking for local support groups or informational meetings many hospitals have groups in place. They may not have a group that is just for individuals with Lupus, but there are usually groups in place for things like arthritis or something similar. If your hospital doesn’t offer a group of any kind, you can also check with other hospitals in your area. Chances are pretty good that you can find a local group somewhere near you.  You can also ask your doctor for recommendations of any groups that are available in your area.

If in person groups are not for you you can always search Facebook for support groups like I referenced above. If you search for Lupus Support Group, in the Facebook search field you will get at least 50 groups. There are groups for people in certain states, people with multiple diagnosis, people with SLE, or Discoid Lupus. My point is that you can find a group for just about anything. Not all of them will be for you so I recommend trying a few different groups. Personally for me after I spending several months searching for “The” group for me, I still couldn’t find one that really felt like “home.” So I gathered a few of my lupus sisters, who I had gotten to be good friends with, and we started our own group. We named it Lupie Groupies. Over the years since I started the group we have grown to over 600 people in the group.  But we are able to keep the small family like feel. And that is important, I think we all need a place to go where you can be open and vulnerable and not feel like you are being judged. If you don’t have that safe feeling you are less likely to really be open or gain any benefit from the group.

The biggest complaints I have heard personally about online support groups is that they are all doom and gloom and full of people who always complain. And that is possible. When you have a major diagnosis that is a major part of every part of your life there will be some gloomy days. If you find a group that you feel is to negative than move on and find a new one.  In order to really benefit from a group like I said before you need a place where you can be open and vulnerable. But you also need a place that is uplifting and supportive. Without those qualities you will not benefit from the group.

You also need friends that are supportive and uplifting. That can be more hard to find than a good support group. Honestly, the best friends I have who keep me going are people I’ve never met in person. They are people that I have found over the years in online support groups. They are the people that I can whine and moan to without judgement, because they get it. I don’t have to worry about judgement when they ask how my day was and I am completely honest. To many it seems strange to have friends you have never met, but I am okay with my being people I haven’t met. These women are always there for support and I am always there for them. My biggest recommendation is that you find a good group to join and make friends with some people in those groups. Those are the people who will get you and how you are feeling and truly support you!! I also recommend giving your family and local friends some time. They to are dealing with the life changing diagnosis that you are, they are just dealing with the changes in a different way. They need time to think about, research and get used to the new diagnosis and how it is going to impact you and your relationship with them. In most cases they will come around and be supportive at some level. Some more than others. And some never will get it. But sadly that’s just the way it goes.

The takeaway here is that you need support when you are dealing with a life changing diagnosis. You may not find in the most conventional places like in your family and friends, and that okay. We have to take it where we can get it. Without good support we can’t truly deal with the changes we are experiencing and that can impact your health in a negative way. If you can find a good support group then stick with it. It really be can be life changing.

With Love,

Amber