The Truth Behind Photosensitivity

By AMY NORASummer is officially here. It means we go to the beach, we sit outside at the Ballpark, we go and plan for those wonderful picnics, we spend time with family barbecuing, it’s about the time with friends family and just enjoying those wonderful late nights at the lake. The other thing is that we are out in the Sun a lot. When you have an autoimmune disease that also means that most likely you experience photosensitivity. Photosensitivity is that nasty little friends that accompanies us everywhere. It means that we lather on that sunscreen as if, well honestly, she were our best friend. We layer it on at 2 hour intervals as if our lives depended on it; ironically in a way our lives do depend on it.“Photosensitivity is the term used to describe sensitivity to the ultraviolet (UV) rays from sunlight and other light sources, such as indoor fluorescent light. Photosensitivity can cause rashes, fever, fatigue, joint pain, and other symptoms in people with both cutaneous (skin) and systemic lupus. Excess exposure to UV rays is a common trigger for increased disease activity (flare) of both cutaneous lupus and systemic lupus.” (Lupus Foundation of America)Remember, with the 4th of July holiday coming and summer here,  have fun but also protect yourself.  Use sunscreen often, stay in shaded areas but remember you are still exposed to UV rays, wear hats, and just be smart. Lupus Love…

Confessions of the Chronically Ill

Co-Written by myself & contributor Amy Nora

When you have a chronic illness like Lupus there are going to be some thing’s that you hold true. Things that you don’t share with most people, things that you know most people don’t want to know, or simply wouldn’t understand. Things that you feel people who aren’t sick would never understand. So as we have come to an end of the 2018 Lupus Awareness Month, I want to share some confessions from the chronically ill. Remember they might not be true for all chronically ill. This is based of the experiences/issues we have and deal with.

1. I often feel guilty — Some of you are probably wondering why we would feel guilty. Well, there are a MILLION different reasons. We may feel guilty that we can’t contribute to our families like we want to. Or we might feel guilty because we feel like we are a burden to our family and friends. Or because of the constants needs or help for basic daily life we need to ask of others. There are a million reasons why we might feel guilty.

2. I feel like I’m alone — Again you may be wondering how we could feel alone when we have friends and family all around us. Well, that’s simple, we may have people around us but they don’t know the struggles we face everyday. So it’s not so much that we may feel alone physically, it’s more mentally and emotionally. Because most family and friends don’t know what it’s like to live our lives, and they can never truly understand our world.  We try and protect them from what we go through, because as much as what we deal with, we also know that they feel a stress.  This can intensify a lonliness.  It creates a vicious cycle.

3. I often experience some level of anxiety and depression — There are so many reasons we may feel this way. We could be anxious because we aren’t feeling well and there’s nothing we can do about. Or because there is something coming up that we aren’t sure we have the energy or stamina for. On the other hand we could be depressed because we had to cancel ANOTHER date with a friend or our spouse. We might also be down because we feel terrible and have for awhile. That takes a toll on your mental health.  The very nature of having a chronic illness creates a constant mental battle that is medically known to alter brain chemistry.

4. I am almost always in pain — Even though you know I have pain medicine and have taken it. I am generally always hurting somewhere. NO, it’s not searing, burning level 10 pain. It’s more like a constant nagging annoying pain. Like a level 3 Pain. But it’s usually constant. And chances are I won’t say a word, and will often say “I’m fine” when asked.  Just remember, your fine and my fine are not the same.  Sometime ask, “No, how are you really doing today?  I want to know.  What can I do that would help you?”  When in pain and tired, these words are a balm physically and mentally.

5. Every good day is truly a gift —Sadly, we don’t always have a LOT of GOOD days. So when I do I may need help remembering that this day is a gift and I should take full advantage of it.  Do not make me feel guilty for having a good day, do not take my joy for this good day.  I may have to pay for this good day for a week to come or a few days in bed or on the couch with pain, fatigue, or any combo of problems including infections.

6. I don’t look sick — Nine Times out of ten you wouldn’t know by looking at us that we are sick. That our bodies are constantly at war with itself. We just look like average people on the outside, but inside we may be a disaster. Going out in public knowing that others can’t see our illness can lead to feeling alone, or being anxious.

7. I am often afraid to work, make plans or have a life — I know this one sounds silly. Why would anyone be afraid of those things? It’s simply because we never know what our body is going to do. I may feel fine at 8am, but at 11am I may feel like I was hit by a bus. Our bodies change so quickly and often without reason. So we never know if we make a dinner plan for next Wednesday how we will feel.  Every plan is made with the caveat of, “If I feel okay,” and buying tickets for an event is a terrifying exercise in wasting money and letting friends down.

8. Not all doctors understand — Sadly, this is the case a lot of the time. I don’t know how many times I’ve seen a doctor who’s not my own and they know nothing about Lupus or how it impacts a person’s life, body & health.  The American Medical Association even acknowledges that auto-immune diseases are one of the most under taught areas in medical school because of their complexity.  More times then not, as the patient you are educating the provider when you are already ill.  At best, they believe you and do some additional research quickly to understand.  At the worst, they do not listen and make medical decisions that do not help you are your condition because they do not understand fully how Lupus impacts you.  Remember, Lupus effects each patient differently.This is just a few confessions of the chronically ill. I could probably write a book on things we feel but never share. We don’t want pity so we often keep our issues to ourselves. We don’t want to be judged or looked down upon because of our health.  What we do want is for people to understand.  Just this week, Toni Braxton tweeted a picture of herself, and people were quick to make a judgement that she had plastic surgery.  No, she is on steroids for her Lupus.  Know Lupus.  Know that we deal with our body attacking us on a daily basis, and that no two cases are the same.  Know that we keep our secrets to protect you, but know those come at a cost.  So today…. We let a few cats out of the bag.

With Love,

Amber & Amy

The Strange Foe and Friend by Amy Nora

When it is 3AM and you are awake for your sixth day straight from painsomnia, it is hard to see anything good or nice in pain.  When you have a chronic disease such as Lupus, Fibro, Rheumatoid Disease, or many of the hundreds of others auto-immune diseases pain is just a part of life that sadly you live with.  Pain is a function that warns us that something is wrong.  It is our body warning us of danger in the case of a heart attack, of a catastrophic injury, or of the constant disruption of a system or systems.
This morning, I was laying there thinking that the pain in my legs had become almost a comfortable old friend.  It Is the pain I know that lets me know I have gone to far, the cliff is about ten feet ahead, but I am okay.  It is actually the oldest pain of my disease state.  Maybe that is why it is so familiar to me.  I hate it, I am by no means saying that it is something I like or appreciate as an entity within me.  Yet that leg pain is always the first to warn me that my disease is going haywire, that I have pushed to hard, that my world is not right.  In an odd sense, my foe is also my old friend.  It lets me know that my nemesis is preparing to strike.  It has become something I have learned to cohabitate with regardless of whatever else is going on.  The fire may burn hot with inflammation, but it is a familiar inflammation I know.   I know what will come next… I know what the next steps of my treatment protocol will be.
Today, I challenge you to think about what your warning symptom/Sign is… Do you have something that lets you know you are getting ready to flare?  A trigger?   Is there a common symptom or symptoms that warn of a coming flare?  Part of disease management is being able to target these.  Sometimes, no matter what you do there will be no warning.  You will wake up one morning in a flare, or you will be out to lunch and by the time you get home you will be unable to walk because of fatigue and inflammation.  But knowing symptoms of flares help prepare you to fight back against these diseases.
You can then work with your doctor to isolate these symptoms and work on a treatment protocol when these symptoms arise.  It also gives more information to your doctor as to how your disease works and acts.  This grants them more insight and information.  Remember, any information that we can continue to glean on auto-immune diseases is needed.
Knowledge is power!  Preparing yourself, Knowing what to expect and how to help yourself empowers you.
In Lupie Love…..

Dear Lupus…..

Dear Lupus,
You came into my life with asking, without an invitation. You came in and made it known by all that you were GOING TO BE THE CENTER OF ATTENTION. Who asked you to come? Who asked you to come into my body and take my life away?? I sure as hell didn’t.

Looking back you made yourself known and reared your ugly head the first time when I was in highschool. Although no one called you that. They just said I had mono forever. Six months to be exact! Who has mono for six months?!? I always wondered why the simplest tasks made me exhausted and the people around me could run circles around me for hours. I also wondered why I seem to require so much more sleep than others my age! It was because of you LUPUS.
You went away for several years for the most part and I was grateful. I was able to finish nursing school and my bachelors degree. I was able to work as a nurse for 6 years without any issues. Even though you weren’t active I was always exhausted all the time. And I could never stay up as late as people my age or couldn’t go out and “party” like others my age etc. It was all because of you. Damn you LUPUS!

Finally six years ago you officially made your move. You moved in and took up residence for good. Although we never discussed this, I never agreed to this, I didn’t give you a key or clear out a drawer for you. Instead you just made yourself welcome. Since that day long ago. You’ve made my life or a good part of it a living hell. I have lost several friends along the way because they think I don’t want to see them or that I’m just full of excuses as to why I don’t want to go out to eat or go the bar after work. Or because they simply don’t understand when I say I’m tired it’s not just lay down and take a nap tired it’s pure exhaustion. The one thing you’ve taken away from that hurts the most is the fact that I haven’t been able to cheer on my sister as she pitches and plays travel ball all summer. Because of the heat. Since you moved in you made me so sensitive to the sun and have taken away my ability to be out at the ball field without paying for it later. And it literally has broken my heart.

You came and brought along uncontrolled pain (at times), long term steroids (leading to weight gain), inability to be in the heat or sun, sleep issues, and a plethora of other very undesirable diseases that go hand in hand with you. I can’t thank you enough for your generosity. You’ve done enough. Now go away and take all the “gifts” you’ve brought with you that are also not welcomed here.

One of the reasons I hate you the most is because between you and your friend endometriosis I will no longer be able to carry my own baby. And I’ve never wanted anything more than to be a mother. But because of you, the side effects of the drugs I take to treat you, and your buddy endometriosis that’s no longer possible. My lifelong goal gone in a second.

You can also take adrenal insufficiency and Hemiplegic migraines with you. Because of the three of you I had to quit my job and move home with my parents. Because you were all being so mean. My blood pressure would stay in the 70’s and 80’s because my adrenal glands no longer act like they should. Over the last two years I have spent more time in the ER than most people do a LIFETIME!! All because of the debilitating migraines that are now a part of my daily life.

I’m tired of all of you. Tired of the medications, the depression, the anxiety and most of all the pain.  I never asked any one of you into my life, yet you are all here. You have changed my life in so many way I can’t even count. I’ve lost the majority of my local friends. I will never be able to complete my masters degree that would give me the knowledge to teach nursing school because of you!! Thanks to you I can’t hold down a job outside the home. You need to pack up and get the hell out of my life! GO. GO I tell ya!!

I live by the verses.

*Philippines 4:13 I can do ALL things through Christ who strengthens me.

*Isaiah 41:10 So do not fear I am with you; do not be dismayed for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand

With Love

-Amber

** This is my updated letter to lupus. I felt with it being Awareness Month this was a good time to update and share.

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

Is It The Cold or The Flu?!?!

Let’s talk about the topic that seems to be on everyone’s mind. Colds and the flu. Not the stomach bug you might pick up, but the big bad bug. INFLUENZA!! This is a dangerous bug for those of us who are immune-suppressed/immunocompromised. Where a normal person might only be down for a few days, those of us who have Auto-Immune diseases could be down for weeks. Or even end up hospitalized and critically ill. So it’s nothing to mess around with. Let’s look at the differences between a cold and the flu, the treatment!!

So it is cold and flu season so sometimes it is hard to know if you just have a cold or the flu. The flu is worse then any cold virus. And the symptoms are different. Let’s look at the symptoms.

1. Fever/Chills- The majority of influenza cases start with a fever that can last between 4-5 days!! Cold viruses may cause a low grade temp, while influenza causes high temps of 102 and higher. The higher the fever the more likely you are to have the chills. And they are more likely to be seen in cases of the flu, rather than a cold.

2. Muscle Aches- One if the biggest reasons you feel so awful when you have the flu is the muscle aches!! Any slight movement can make you hurt everywhere!!! You would most likely notice the aches in the chest, back and legs. Muscle aches are seen with the flu and are not common with the common cold.

3. Fatigue– The fatigue from the flu is not like the everyday fatigue from everyday life. It is an intense feeling of exhaustion and weakness! This fatigue may last several weeks before you return back to your normal health! The weakness and exhaustion can last up to 3 weeks or longer in the elderly or those with chronic illnesses or weak immune systems. With a common cold the fatigue and exhaustion takes much less time to resolve, usually only 2-3 days.

4. Cough- The cold and flu are a respiratory disease which means they attack the lungs! Therefore, with patients with the flu and cold a cough is common. However, with the flu the cough usually begins with a sore throat which then develops into a persistent dry cough that usually happens in two to three days. Pneumonia is a common complication of the flu especially with those who have weakened immune symptoms. If you continue to cough and start coughing up yellow or green mucous along with chest pain make sure to call your doctor!!

5. Shortness of breath or difficulty breathing- This is one of the most common symptoms of the flu because of the congestion and persistent cough! The flu can also cause chest pain because of the shortness of breath. The chest tightness is caused by restricted nasal passages. If you have any kind of lung disease this may be worse for you!! Shortness of breath is not a common symptom of the common cold.

6. Sneezing – The cold and flu is easily spread by sneezing or coughing. In order to prevent the spread of either, please make sure you are covering you cough and you are sneezing into a tissue. However, keep in mind that those droplets from your sneeze will remain on your fingers. So be use your wash you hands good or using a good alcohol based sanitizer.

7. Nausea, vomiting and diarrhea- These are common symptoms with the flu! If you have persistent vomiting or diarrhea make sure that you are drinking as much as you can to keep yourself hydrated or call your doctor for IV fluids!! This is not typically seen in a simple cold!

8. Headache – While a headache is not a reliable indicator that you actually have the flu, it is a common symptom. A headache caused by a cold is much less severe than those caused by the flu. The flu typically causes inflammation of the mucous membranes and the sinus cavities, which in turn causes pressure around your eyes and face, causing a severe headache.

9. Stuffy Nose – If you have a stuffy nose with no body aches or fever, and some minor fatigue, most likely it is just a cold. Both the flu and cold can lead to a sinus infection that can be felt as a deep and constant pain in the face, the head and your nose. If you feel like you have developed a sinus infection contact your doctor.

10. Ear Ache – An earache causes by the flu can range from a dull ache to extreme burning. And the severity can range in severity from mild to moderate. Both the flu and colds can irritate the Eustachian tube, that connects the throat to the middle ear, and can cause full pain in the ears. The pain should go away on its own as the flu or cold gets better!

So how do you treat a cold or the flu?!? For a cold it’s all about symptom management. So over the counter meds for fever, sinus congestion etc. For the flu you should see your dr. If they test you and you have the flu they may prescribe an anti-viral medication. The anti-viral meds can only be given with the first two to three days after symptoms develop. You can also treat the flu like the cold, with symptom management. Decongestants, fever reducing meds, etc. And if you feel like you are developing pneumonia or other complications from the flu you will need to call your dr for an exam to determine further treatment.

The big thing to remember is to STAY HOME if you think you have the flu!! And if you have to go out wear a mask! The flu is very easily spread through droplets and contact with those droplets. You don’t want to be spreading the flu everywhere you go!!

With Love,

Amber

Tips on Treatments for Migraines.

I by no means am an Expert on Migraines. But I do feel that I know quite a bit about treatment options for migraines as I have tried just about EVERY treatment known to man to get rid of mine. So today I will talk about possible treatment modalities for migraines, oddly enough while suffering from one of the worst migraines I have had in the last few weeks. But our world goes on right? From having so many I have learned that our world just can simply stop just due to a migraine. Do I do all I can to slow my world down during one? YES!!! We all have to do what works best for us to keep our world going. The things I am going to talk about are things that have been recommended to me by Medical PROFESSIONALS, and any thing I discuss should not be started into your regimen without the approval of your medical provider. This may be a little long but I get asked several times a week about what I do to treat my headaches and all of this has been or is currently part of my headache journey.

  1. Pain relievers like Aspirin or ibuprofen (Advil, Motrin IB, others) could potentially help relieve mild migraines. Tylenol can also work to help the mild migraines in some people, especially in the population of people who are on Blood Thinners and can not take medications like Aspirin or Advil.
    There are medications on the marketed that are specifically for migraines, such as the combination of acetaminophen, aspirin and caffeine which is known as Excedrin Migraine, these could potentially ease moderate migraine pain. However, none of the over the counter meds will be effective on their own for a severe migraine. And with many of the over the counter meds like Aspirin, Advil, Ibuprofen if they are taken too often or for too long at one time it is possible for them to lead to bigger problems such as stomach ulcers, GI bleeds and even Medication overuse headaches.
    There is a prescription pain reliever called indomethacin that may help diminished the effects of a migraine and is available in suppository form (not fun I know!!!), which may be helpful if you’re nauseated. Narcotic pain medications are rarely ever used in migraine treatment simply because many Providers feel like narcotics will cause rebound headaches in the long run and cause more problems than good, which is controversial to many, So I won’t go into it any further at this point
  2. If over the counter meds don’t work for you migraine than the next step is usually a medication group call The Triptans, which often used in treating migraines. Triptans make blood vessels constrict and block pain pathways in the brain. You have probably heard of them, they are medications like Imitrex, Zomig, Relpax. Triptans effectively relieve the pain and other symptoms that are associated with migraines. They are available in pill, nasal spray and injection form. The fact that they offer different forms is helpful due to the fact that if you are vomiting it is hard to keep down a pill for said migraine.
  3. If the Triptan class of drugs do not work to control your headaches and you are having to take them more than a couple times a week it is time to call your Provider again. At this point they may talk to you about how often your headaches are happening and if you have been able to pinpoint a cause. If no cause has been noted they mas discuss with you about doing some imaging like CT SCAN or MRI just as a precaution to rule out anything further that could be causing your migraines.
  4. If you have vomiting with your migraines, first let me say how very very sorry I am! I have terrible nausea and vomiting with mine. And thankfully my Providers have been nice enough to prescribe me anti-nausea meds to help when or should I need it, so don’t be afraid to ask!!
  5. Another kind of medication that your Provider may discuss putting you on if the Triptans and Over the counter meds like Aleve are not helping with the migraine is what they call Preventatives. These are medications that you take daily to help prevent your headaches from getting to the point of a migraine. However, there are requirements one must meet in order to be considered for a preventative med, which I will list below. Taking preventative medications can help to reduce the frequency, severity and length of a migraine and couple potentially increase the effectiveness of other meds used to relieve symptoms during attacks.  These medications will not take effect overnight it can take several weeks to see results. It could be recommended that you take preventative meds daily or just around your triggers. For instance if you get migraines around menstruation you might take the medication just around that time of the month for you,. Eventually if you have good results on the preventative meds your doctor may discuss tapering you off the medications to see how your headaches do without the medications.  The most common classifications of medications used as Preventative meds are Cardiovascular (heart) Medications, Antidepressants and Seizure medications. The qualifications I mentioned above are:
    1. You have four or more debilitating attacks a month.
    2. If attacks last more that 12 hours.
    3. If pain-relieving medications are not helping.
    4. If your migraine signs and symptoms include a prolonged aura or numbness and Weakness
  6. The last prescription medication I will discuss is Botox. I know you are thinking, “Wait, isn’t that the stuff that people put in their faces so they can’t move them and get no more wrinkles? Yup, same stuff! Just works a little different. I have yet to find an exact explanataion as to why it works but it does. There are some terms that have to be met before you can sign up for Botox. Here is what the Botox website says “BOTOX® is a prescription medicine that is injected to prevent headaches in adults with Chronic Migraine who have 15 or more days each month with headache lasting 4 or more hours each day in people 18 years or older.
    It is not known whether BOTOX® is safe or effective to prevent headaches in patients with migraine who have 14 or fewer headache days each month (episodic migraine).
    BOTOX® prevents on average 8 to 9 headache days and migraine/probable migraine days a month (vs 6 to 7 with placebo) after 2 treatments (at 24 weeks).”Botox website
  7. Some over the counter supplements that are often encouraged for migraine sufferers are Fever Few, Magnesium and B12, B6 and Folic Acid. Fever Few which is known as a herb used to control the pain of migrain. While Magnesium is used in hopes of preventing migraines. Some research has shown magnesium levels in the brain if often low during migraine attacks. And because magnesium is needed for a persons nerves to function properly, some think that low magnesium and migraines are somehow related. Vitamins B6, B12, and folic acid have been found that they  may reduce the frequency, severity and disability of migraines, according to new research. Daily vitamin supplements were found to produce a two-fold reduction in migraine disability.
  8. Invest in GOOD DARK SUNGLASSES- This may sound silly but you can never had dark enough sun glasses when you have migraines so invest in a good pair that is super dark and will really shield your eyes. There are multiple places to buy these but there are four good pairs on Amazon ranging in price from $49.99- $99.99, and are available as indoor and outdoor lenses!!!
  9. Another item that you can’t go wrong with and would be a great Christmas gift would be a good EYE MASK!!  These like anything vary in thickness and size and in bandwidth. You can find them at many different locations from the pharmacy to Amazon to Bed, Bath and Beyond,. The one below Is one that I recently purchased from Amazed that is desidned for those of us with migraines and has the ability to be frozen. And was only $10.
  10. If I had to pick one non-pharmacological item that has helped me the most it would be my ICEKAP!!! It is exactly what it sounds like. I hat with ice. But the ice packs are spaced properly so you don’t have to try and keep one on the front of your head and the back and keep them from sliding, It has really been a game changer. The Icekap website And last but not least Peppermint Oil. I am not big into oils but this is one things that I can carry in my purse and use anywhere when I feel a migraine coming on. And it also works for nausea. So killing two birds with one stone so to speaks with one oil. Unlike many of the other things that I have talked about. The more well known companies are the best to buy for like Young Loving because you know that their oils are 100% pure.

I hope that you find this list helpful and maybe I was able to give you a tip or two that you had not tried before. If you have any questions or comments or suggestions please don’t hesitate to leave them below!!

With Love,

Amber

5 Quick Tips to Avoid Illness During Cold and Flu Season

Yes, it may be fall and almost the holiday season. But with those wonderful things also come the bad! Bad for immunocompromised individuals that is. What am I talking about you might ask?!? Cold and Flu season!! For those of us with little to no immune system this can be the worst time of year. As all the germs running rampant make it hard for us to leave the house!! But there are steps we can take to try to prevent getting sick. They may not all be pleasant but if it keeps me out of the hospital I’ll do just about anything.

1. GET A FLU SHOT – The first thing we need to do to prevent the Flu is to get the Flu shot. Now I know not all of us can take the flu shot due to allergies or sensitivities, but those who can should. Some say that the flu shot makes them sick and while that may be true in a few cases, it will not give you the flu. We should also encourage those who we are in close contact with to also get the flu shot. If those we live with and work with don’t get the shot we can still be at risk for getting the Flu.

2. WASH YOUR HANDS- The next best thing we can do to prevent the nasty cold and flu bugs from getting us down is to wash your hands. Wash, wash, wash!!! When should we wash you ask? Well, we should wash our hands after using the bathroom, especially public bathrooms! (Also while I’m on the topic of public bathrooms, you should do your best not to touch the sink knobs or door handle after washing and should use a paper towel to do so!) We should also wash after sneezing or coughing on our hands. As well as after contact with surfaces that others may touch like door knobs, shopping carts etc. If you are unable to use good ole soap and water, use an alcohol based hand sanitizer until you can get to a sink.

3. AVOID CROWDED PUBLIC PLACES- We can also try to avoid going out into public at the peak times. The more people confined into a small space the more likely you will be to get sick. So try to go out first thing in the morning or last thing in the evening!

4. AVOID SICK CONTACTS- We should ask that our friends and family stay away when they are ill. If they know they are sick they should limit contact with those who are immunocompromised! And if they have to be near it is okay to ask them to wear a mask.

5. WEAR A MASK – We can also wear a mask when we go in public. It may not be pleasant or comfortable but it’s another way that we can prevent illness and hospitalization!

Prevention is important for those with low immune systems as well as those who don’t! When it comes down to it sometimes there is no way to prevent illness this time of year. But these five basic tips are quick and easy ways that we can implement to try to prevent contracting an illness. We have to do all that we can to prevent illness because no one else is going to do it for us!! We have to take prevention into our own hands and do all we can to keep ourselves healthy. We all need to do our part to stay healthy!

10 Ways to Survive The Holidays With Lupus

We’ve made it through Halloween and it’s almost the holiday season again. For most it’s a joyful time, but for those with chronic illnesses it can be quite the opposite. It can become a time of worry and planning. Planning how to make it through all the parties, the cooking, the crowds etc. A time of worry about the germs we will be exposed to, if we will get sick, when we can squeeze in naps, and how far in advance we can prepare dishes so we don’t have to do marathon cooking! The holidays are just plain exhausting, and for many don’t carry the excitement that they once did.
So what can the chronically ill do to make it through the holiday? It depends on the person and what illness they deal with. That being said the following is a general list of things we can do to get through this season.
1. PLAN AHEAD- One of the best things we can do to get through this season is plan ahead. Know what you have when and plan accordingly. If you know you have events several days in a row or an event that is long you can plan the remainder of your week so you can rest. You can move your schedule around so you have plenty of down time so you have the energy to get through your events.
2. TRY TO STAY AWAY FROM THOSE WHO ARE ILL- I know this is much easier said than done. But it is essential to getting through the holidays without getting sick. It never fails We go out shopping or to a party and come home sick. So don’t be afraid to wear a mask when leaving the house. I know you feel like you stand out and you get stared out. But really it’s for Your Health!!
3. REST, REST, REST- I touched on this above but to make it through the holidays rest is going to be essential. Between the cooking and the shopping and the parties if we don’t rest we won’t make it through the season unscathed and somewhat healthy!!
4. DONT FEEL LIKE YOU HAVE TO ATTEND EVERY EVENT YOU ARE INVITED TO- It never fails that during the Holidays there will be tons of events and people who want to get together. And that’s great and grand. But not at all plausible. So pick and chose the most important ones and decline the others. People will understand!
5. IF YOU ARE HOSTING A PARTY OR DINNER, DELEGATE! – There is absolutely nothing wrong with asking others to bring side dishes or dessert. Ask someone to come over before to help you, and start the party early!! Also try and plan dishes that can be made ahead of time and refrigerated or placed in the freezer till right before the event! Don’t be afraid to ask others for help to clean up!!! You don’t have to be the Lone Ranger! It’s okay to ask for help!
6. DO SOME OR ALL OF YOUR SHOPPING ONLINE- In order to conserve energy and preserve your Health do your shopping online. There really aren’t many things you can’t buy online. And most places will even do your gift wrapping for you!! Online shopping is the perfect way to shop for those of us chronically ill. If you are worried about additional costs, the prices are the same as in store, and with a few Google searches you can normally find an additional online coupon code to take a percentage off.
7. PLAN THE BEST TIMES IN THE STORES!- If you are a person that prefers to shop in the store or have an item that is only found in stores, that’s totally understandable. That being said try to pick the best times to be in the stores. Meaning when the crowds aren’t as heavy and the parking lots aren’t full. These times are generally first thing in the morning when the stores open or right before they close. If you have to be in the stores try to get to it before the huge crowds appear in the weeks immediately leading up to the holiday. Don’t be that person fighting the crowd on Christmas Eve.
8. STAND UP FOR YOURSELF/DONT FEEL BULLIED- Plain and simple you just can’t do it all. There is no way that you will be able to attend every party or gathering, do the cooking, the shopping etc. so stand up for you and what’s right for your body. And don’t let anyone bully you into changing your mind when you know it’s wrong. They don’t have to live with the consequences of pushing yourself too far.  So do what you know is right and feels right for you!!
9. BE WISE IN YOUR CHOICES OF FOOD AND DRINK! The holidays are known for being a time in indulge, or over indulge for many on all the great foods we don’t have all year. It is also time to be merry and have an adult beverage to celebrate. That being said if you know eating certain foods or drinks are going to make you sick be careful. No matter how good it may look and smell it’s not worth the result they may cause.
10. Last but definitely not least. FIND TIME TO TREAT AND PAMPER YOURSELF- I know the Holidays are meant to be a time of giving to others, but you need a treat now and then too. The stress of the Holidays and others attitudes can really bring a person down. So take sometime in the coming weeks to do something for you once a week. Whether that’s soaking in a hot bath, or getting a massage, or something a simple as curling up for the evening to watch a favorite Holiday movie. DO IT!! You’ll thank me later.
These are just 10 simple ways to make this time of year a little easier on the Chronically Ill. These are things we all may struggle with but we need to really focus on during the Holidays to help us make it through as healthy as possible. No one wants to be down and out while everyone else is celebrating. Personally I love a good hot bath with a good bath bomb. Or reading a good book or watching a movie and just relaxing with my heated blanket!!
May you all have a Happy Holiday Season and hopefully you will find these tips helpful.
Happy Holidays!
Amber

Epilepsy, The System Shocker

What is the first thing you think of when you hear the word “Epilepsy?” What about “Seizure?” Normally, people think of someone on the floor convulsing. What they do not realize is that there are over 40 different types of seizures; some of these you will never know the person is having that seizure unless you know exactly what to look for. Unfortunately, that person will know and feel the after affects for sometimes and hour or days to come even with medicine.

Simply put, a seizure is a disruption in the brains electrical activity. Think of the electrical current being sent to a lightbulb, when that lightbulb flickers or goes out for a few seconds, that is a seizure. Epilepsy, is a recurring disruption of the electrical currents between various lobes.

Roughly 65 Million people globally have Epilepsy with 3.4 Million of those being Americans. There are approximately 150,000 new cases diagnosed in the United States each year. What is perhaps the most disheartening, is that 1/3 of all of those with Epilepsy, do not have a controlled case because there is not a current therapy that is effective for them. That is 21.45 Million people that live with uncontrolled seizures. Common triggers for seizures include lack of sleep, hormone changes, flashing lights, stress, particular foods, certain medications, alcohol or drug use, missed doses of medication, and low blood sugar.

Living with epilepsy is not easy. There is always a sense that you are walking on a glass bridge that has a thousand cracks, and a ravine of jagged rocks is there waiting to catch you. When my seizures returned, there was a new level of violence to them that I had not experienced. Previously, I had polite petit mal seizures. I just stared into space for a few seconds. This time, I would convulse for thirty minutes, as EMT’s and Doctor’s would struggle to get the lifesaving medicine into me. I would then wake up and be exhausted, have no concept of hours or days before having lost memory, and then the bruises from the actual seizure itself. I have never been beaten by another human being; however, when the police ask you if the domestic violence officer needs to come to you home, and your only choice is to show the very worried officer your hospital discharge papers you start to realize just how strange this new world is.

There is a fear of how people see you. You get nervous going out because unless you are with a “safe” person, what if something happens and your friend does not know how to handle the situation? Epilepsy is yes a physical disease; however, it is also a psychological warrior in that you have to plan for it.

When newly diagnosed with epilepsy, the looks of fear, anxiety, helplessness, what do I do if, did she do something to deserve this, is she demon possessed (yes in 2017 that is still asked), I will just stay over here because it is better not to get to close, and a thousand other glimmers that float across people’s face become a burden and a stress to bare. As the patient, you already struggle with understanding how your own life is changing. First, you are trying to understand what your own body just did to you. Second, you have the emotional fallout and instability. You actually go through the 5 stages of grief. Third, you then try and understand your seizures, triggers, if you have a tell or aura, you keep that log and try and find anything or everything that helps. Fourth and finally, you begin to step out into the world and realize that no matter what somehow you will overcome this.

The medication cocktail search may be easy or it may be hard, the sense of humor that will develop will be disturbing to those on the outside, I mean hey how many people get to have a lightning storm in the brain?

Sources:
Epilepsy Foundation of America
https://www.epilepsy.com/learn/about-epilepsy-basics