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BOOKE REVIEW: FAB Health, By Paulette Agnew

I received this book From Paulette Agnew, as a collaboration with The Chronic Illness Bloggers.

Before I get into my review of Paulette’s book let me tell you a little about what her book is about. The book is described on the back cover “FAB Health introduces a new healing paradigm encompassing light frequency and bioenergy as an alternative to antibiotics and other drugs. Using only FAB (Frequency and Bioenergy) medicine, Paulette Agnew completely recovered from Lyme disease not once, but twice coming back from the brink of death to the radiant health.” Throughout the book she provides a look into how natural things around us like the sun, ions from rain, walking barefoot and eating healthy food can provide the body with rejuvenation. She also explains why and how these things provide the human body with what we need, and does so in a way that anyway can understand. Paulette does a really great job of explaining why we get sick down to the molecular level and explained how we can treat those illnesses using bioenergy and light.

To be honest, this topic was totally out of realm of anything I have ever learned. Frequency, bioenergy and healing without antibiotics and other medications was nothing we ever discussed or were taught in nursing school. Nor have I ever heard those words from any doctor I worked with or have seen over the course of my lifetime. That being said it did peak my interest because over the course of my life, especially the last six, I have been on so many antibiotics and am honestly terrified I will end up with a superbug. So the thought of learning a way to treat infections and my many conditions a more natural way was appealing. What I found even more appealing is that she was able to cure herself from a SEVERE case of Lyme disease twice. Without all the medication and things that those of us with chronic conditions take on a daily basis.

The thought of being able to give up all the daily medications and the IV treatments and the stuff I go through with my health sounds amazing. But to be honest it’s a little hard for me to wrap my head around. I’m not saying it’s something I won’t look into further but I really need to take some time to think on it. I think it’s harder for me to really wrap my head around because I have spent so many years working and studying modern medicine and it’s what I have put my stock into for many years. I did enjoy the book because it really made me think about the fact that there are other ways to treat illness other than just throwing anything medication at it! So if you are looking for for a book to give you a different look into treating chronic illness or even just an infection this is the book you should look into!

I do want to thank Chronic Illness Bloggers for facilitating this collaboration. And Paulette Agnew for being kind enough to send me a signed copy of her book.

Here you will find a link to Paulette’s book if you would like to check it out!

FAB Health: Understanding Why We Become Ill So We Can Get Better https://www.amazon.com/dp/1683508610/ref=cm_sw_r_cp_api_

With Love,

Amber

WEGO Health Awards Nomination

I am excited to announce that I have been nominated for the WEGO Health Best In Show: Facebook & Best in Show Blog, Awards in the 2018 WEGO Health Awards.

WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics. Click here to learn more about their Patient Leader Network

The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities – but often without recognition.

It means so much just to be nominated. I know everyone always says that, but I really mean it. I have only been truly focusing my energy on patient advocacy work for 6-9months. It’s always been an important issue to me, going back to when I graduated from nursing school in 2007. It became even more important to me once I was diagnosed with multiple chronic illness. When I started having debilitating, and sometimes hemiplegic, migraines I experienced first hand how imperative it is for all patients to have someone else who can advocate for them in times when they are unable to do so for them-self. At that point I realized that I really wanted to do all I can to make sure people have an advocate when needed. As well as helping to educate people on their illness so they can be the best self-advocate possible.

I do want to thank Tracy Wellman (who I met in the Facebook group I started), and the anonymous person who nominated me for the WEGO Health Awards, Best In Show: Blog & Facebook. With out the communities I am a part of I would be nothing. When I had the idea to start the Facebook support group 4+ years ago, I never thought it would grow to where it has today. Today we have over 600 members and it now needs 5 people other than myself to help run the group. We have such a good group of people who are always there to support each other or just provide hugs or prayers. I am so lucky to have each and everyone of the readers of my blog and the members of my Facebook group in my life!

This year, the 16 WEGO Health Award winners will be honored at an in-person celebration in October co-hosted by the Society of Participatory Medicine at the Connected Health Conference. These conferences are so important because they provide invaluable information. As well as the opportunity to network with other advocates and bloggers.

I’m now looking to my incredibly supportive network to help endorse me for this award. There are two easy ways to endorse that only take seconds of your time!

1) You can click on my endorsement badge located on the right side bar of my blog (if you are using a computer. Or at the very bottom of the screen if using a cell phone.)

2) Click here to be taken to my WEGO Health Awards profile where you can click “Endorse” under my nominee photo. Please be sure to vote in both categories. You can only vote for each nominee once.

If I have ever supported you, made you laugh, or inspired you to keep fighting – please consider endorsing me for this award.

With Love,

Amber

What Do I Take To My Infusion?

So your doctor just told you that they are going to get you scheduled for infusions and so many things start running through your head. Typically the very first one is NOT going to be “What will I need to take with me?” However, after the fear and all the questions about the medication you will be receiving has died down you will probably start thinking about what you will need to take with you to said infusion. How long will you be there? Will you want things to do while you are there? In General most infusions receive last anywhere from an hour to as long as 8 hours or more depending on what medication they are receiving. But you also have to include the time it takes for them to ask all the questions, get your IV started/port accessed and pre meds give so you can easily add about another 30-45 min on to your total time. That being said you will likely want to take a bag of some sort with them.  So that is exactly what I want to talk about today, things you may want to take with you when you go to your infusion appt.

I actually talked to several of my friends who receive or have received infusions in the past about their list of things that they take to their appts. The common thing among almost everyone was that almost everyone takes a blanket. Everyone who has spent any time in a drs offices or hospital know that they are ALWAYS cold. Also many times part of the protocol for many infusions include Benadryl, which makes most very sleepy so having a comfy blanket when you get sleepy just feels good.  Some people even said that they take a pillow with them. I personally found that it was to cumbersome to take a pillow with me for a two hour appt. The facility I went to always had pillows available if I needed one. I did think about buying one of the small travel size pillows to take with me but never did. But I may do that in the future if I go back to getting infusion.

The other common thing among most of the people I talked to was entertainment. Since the appts last so long you will need things to keep you “entertained.” Yes, we aren’t children, but sitting in a chair hooked up from an IV for hours on end can get very boring. Most people said they take a computer, iPad, cell phone, or some sort of electronic device that they can use to surf the internet or watch Netflix. Netflix or something similar is a great way to pass the time. That being said if you do plan on streaming some kind of movie or TV show make sure that you take headphones (ear buds) and a charger for your device. Most infusions centers are set up with everyone in one big room or in a big open space. Not in single patient rooms like when you are in the hospital. So taking headphones is good for you and for everyone around you. Other things that people said they take with them to infusion appointments to keep them entertained were things like coloring books and colored pencils, a book or magazines to read, crossword puzzles or Sudoku. There are a million and one things I could list out, but the point is you will want something to keep you entertained when you get bored.

The final common thing that many people said they take to infusion appts was food. Many times as I have said before you are at these appts for hours and hours so you may get hungry. Most facilities will not feed you, if they do have food on hand it is most likely to be something like crackers and juice or something small. So taking your own food is important. You will probably not want to eat a lot before of during your first infusion just to see how the meds make you feel and if you will get nauseated. But after that you should know what to expect. If it were me I would take a protein bar  and water or something small that doesn’t take up a lot of room in my bag and isn’t super smelly for those who are around me that may be feeling sick.

I hope this helps you all. Infusions can be a scary thought but if you can know a little about them going in it will help. Take time before you go to your first appt to research the medication you will receive and see what the possible side effects are. Also research how long it may take to start feeling better from the medication. My recommendation, for what its worth, is to make sure when you are researching to only use well know sites. Like the Mayo Clinic,  The NIH,  or the drug company website. Never use sites like Wikipedia. Wikipedia can be updated by anyone, anytime therefore the information may not be totally accurate. When living with a chronic illness knowledge truly is power, so taking the time to learn about your condition and the medications you will be receiving is a MUST.

With Love,

Amber

What You Need To Know About Headaches……Part 3

I had hoped to get my migraine series finished before the end of June, which was migraine awareness month. However, sadly I spent most of the last week of June in the hospital with a MIGRAINE. I had dealt with it for over ten days and finally waved the white flag, cried uncle and went to the hospital. I was hoping that I would be able to break the migraine by just getting medications in the ER. But no luck, I had to be admitted for four days. So finishing this treatment section of the migraine series seems appropriate, as I spent the last couple weeks living in this phase of a migraine.

So how do you treat a migraine??? Well, that’s really a hard question to answer. What works for me may not work for you and vice versa.  And I have found it to be more a case of trial and error of what might work. I have tried SO MANY medications and treatment options over the years. Even thought I have been on this migraine journey for over 15 years I am not totally sure that I have found the perfect mix yet. In the early years I only had migraines periodically, it wasn’t until the last three years that they have really become debilitating.  I also didn’t start having the hemiplegic (stroke like) migraines until 2016. One of the big things I can’t stress enough when you are on the search for the best treatment for your migraines is to keep a journal of your symptoms, what you did, what you ate etc on the day of your headaches so you can see if there is something recurring with each migraine. So lets dig in to treatment options.

The most common treatment for migraines are medications. Whether you take over the counter meds, preventative meds or meds for the acute head. Below you will see the each type of medication explained.

  • Over the counter (OTC) medications are medications that can be bought without a prescription on the counter at any pharmacy.
  • Acute medications are used as soon as a migraine is happening. These are also known as abortive medications.
  • Preventative Medications are used on an ongoing or routine bases, in hope that they will prevent or reduce future attacks. These can also be called prophylactic medications.

Over the counter options for acute symptoms include:

  • Excedrin Migraine
  • Ibuprofen which is also known as Advil and Motrin
  • Naproxen which is also known as Aleve
  • Aspirin (you need to check with your physician before taking this medication as it is also a blood thinner)
  • Acetaminophen which is also known as Tylenol

Examples of prescription drugs you might be given to take for acute (when the headache is happening) symptoms include:

  • Triptans are a class of medications that deal with the chemical Serotonin in the brain, which helps to diminish the swelling of the blood vessels that cause the headaches. These drugs are primarily used in the treatment of acute headaches. This method of treatment goes back to the 1950s. Examples: Maxalt & Imitrex.
  • DHE 45 became a treatment for migraines in the 1940s. It is only used to treat migraines in the ACUTE stage and should not be used as a preventative medication. This medication is available as an injection, IV drip and nasal spray.
  • Ergotamine is a medication that is used for a SPECIFIC kind of headache. It is used to treat vascular and tension headaches. The medication works to narrow the widened blood vessels in the head, which in turn reduces the throbbing effects of vascular headaches. This medication is also used only in treatment of acute headaches.

Examples of medications that are given as  preventive or prophylactic prescription medications include:

  • Beta blockers (Use caution with these as they can also lower the blood pressure and heart rate) This group of medication is used as a preventative medication to treat migraines. They work to relax and open up blood flow thus reducing the frequency of headaches.  Examples: Propanolol or Toprolol.
  • Calcium Channel Blockers (Use caution with these as they can lower the heart rate) This group of medication is used because of the way it works, basically the end result is that this group of medications prevent contraction of the muscle wall of the artery.  Examples: Procardia or Verapamil
  • Antidepressants are often used as a preventative medication for headaches because the tricyclic antidepressants also work to treat chronic pain. Thus they work well for migraines.  Example: Elavil
  • Anticonvulsants this group of medication work to calm the hyperactivity in the brain. Example: Depakote, Topamax, Gabapentin

There are also many other options for migraines. One of the most common is the Complementary & Alternative Medicine. This option includes any medicinal products or practices that are not part of modern medicine. Alternative medicine can be defined by its use an an alternative option to traditional modern medicine. Complementary medicine is used in conjunction with traditional medical treatment. These treatments could be things like: any natural remedies like herbal medications or treatments, vitamins, minerals or any kind of supplements. There are many options of herbal medications, which I have tried, the one I personally had the most luck with was feverfew. Other options would include meditation, yoga, biofeedback, acupuncture, tai-chi. Or even body-based practices like chiropractic adjustments or massage therapy. Like always, before starting any new over the counter medication, herb or supplement. Or any increase in physical activity please check with a dr before doing so!

In addition to medications and alternative or complementary therapy, the U.S. Food and Drug Administration (FDA) has now approved two different nerve stimulators that may be helpful for certain people who have not gotten any relief from all other treatment options. The Cerena Transcranial Magnetic Stimulator is a device that has been approved for anyone over the age of 18 who have migraines that are preceded by an aura. This specific device is help to the back of the head and will deliver a pulse of magnetic energy.

There is also a vagus nerve stimulator that has been approved for use in adults with migraines, as well as those who suffer from episodic cluster headaches. This device is hand-held and is placed over the vagus nerve in the neck and it releases a mild electrical stimulation to reduce pain.

In 2010 Botox, previously primarily known for its use by plastic surgeons, was approved for use with chronic migraines. Currently the FDA has only approved Botox use in those with chronic migraines, which means a person must have 15 or more headache days a month. Research shows that the more frequent the headaches the better the Botox result will be. Botox is given as approximately 30 tiny Injections around the head, the injections are given around pain fibers that are involved in headaches. Botox will enter the nerve endings around the injection site and then blocks the release of chemicals involved in pain. This in turn prevents activations of the pain networks of the brain. Patients who receive Botox can only receive injections every 12 weeks. And it generally takes 3-4 treatments at least to begin to fill the full impact it may have. Botox requires pre-authorization by the insurance company before it can be given. Along with very detailed documentation by the doctor regarding the frequency and duration of your headaches.

In early 2018 the FDA approved the first drug of its kind for migraines. It is said to reduce the number of migraines among those who are prone to migraines. Most of the medications currently used for migraines are used to control the symptoms. The new drug, called Aimovig, is designed to reduce the number of migraines among the population who suffer most frequently. One of the largest studies done during the testing stage showed that the number of migraines dropped from eight to fewer than five. This medication is given as an injection, much like insulin, delivered by a pen-like device. The one big downfall for some is that the medication will cost around $6,900 a year, and insurance coverage is not completely decided at this point!!

I hope each of you enjoyed this series on migraines and that maybe you learned something you didn’t know. I know I learned a LOT while doing the research for this series. Migraines are so complex and I could have probably written a five part series or even more. There are so many options of medications available along with many more non-medicinal treatments available, than in years past. And so much research is being done to find the best treatment available for migraines. I didn’t cover Botox in much detail and there is a lot of information I could share. If you are interested in learning more about Botox or the new medication Aimovig leave me a comment and let me know. Also, if you have a condition that you would like me to do a series of posts on let me know and I will dig in and start my research. This has been pretty popular so I am looking forward to doing more multi-part series in the future.

With Love,

Amber

The Day I was Treated Like A Drug Seeker

* This is about my personal experience not a topic to be debated about the use of narcotics.

I went to my local ER last week because I had been dealing with a migraine for almost two weeks. Sadly, is not uncommon for me to end up in the ER for a migraine. In fact that usually happens at least a handful of times every year. Unfortunately I generally end up being admitted for said migraine at least a couple times a year. So I know how things work in this ER and Hospital. Especially since I actually worked as an RN in this hospital for 9 years. But this time was different.  I had the worst experience I have ever had in that hospital. I have NEVER been treated as poorly by as many medical professionals in such a short time span as I did that visit. And that’s saying something because over the last five years I have been there MANY times and have been cared for by MANY nurses, physicians and other providers. Due to the fact that I am no stranger to the hospital, and the fact that I have MULTIPLE invisible illnesses I am not unfamiliar with being looked at like I am drug seeker.  But this visit took that to a WHOLE NEW LEVEL.

I had barely made it into the room in the Emergency Room when this male who I assumed was a nurse came in and without telling me who he was or anything his first words were “I see you take X & Y at home for pain did you try either of those?” Okay, fair question. I calmly explained that they can cause rebound headaches so I don’t always try them for headaches. He proceeded to tell me that I wasn’t going to be receiving any narcotics while I was in the ER that day.  He then went on to ask me what has worked on my migraines in the past. My mom answered that question as I was not totally able to think straight after that long with a migraine. She told him that a low dose of Ketamine has worked for me really well for me in the last. Continuing on to tell him the last time I received it the nurse had never heard of it being used for migraines either so the Doctor took him aside and showed him literature on the studies that have been done. Those studies show that Ketamine at a low dose works well for migraines. And before she finished her sentence the nurse shot that down and said there was “NO WAY” I would be getting that today because its a sedative and not for migraines.. At this point I didn’t know what to even think. Honestly, I was ready to leave and say forget it.  But that wasn’t the last run in with that nurse I would have before I was admitted.

I had a port placed three years ago due to the fact that I don’t have good veins anyway and then I took years of high dose steroids which killed the veins I did have.  So I always request that my port be accessed. He REFUSED. He said I had great veins and placed a peripheral.  I wasn’t in any condition to argue. Because he was so asinine I ended up with five sticks which should have been one.  But I did enjoy when the ER doctor put him in his place and let him know that he would in fact be giving me Ketamine for my migraine. HA!!!

I was really hoping that the Ketamine would work like it had in the past and I would be able to go home. But it didn’t……. So they called a hospitalist to come in and see me so I could be admitted to the hospital.  As he walks in the room he introduces himself and announces “I DO NOT GIVE NARCOTICS FOR HEADACHES, JUST SO YOU KNOW! Again, that word had not come out of my mouth since I arrived. He like the nurse was making an assumption of why I was there based on what he saw on the chart, without actually seeing or talking to the person behind the medical record. I really hadn’t even thought about asking for any narcotics because I know that it can actually make a headache worse. He asks me a few questions and says he won’t be admitting me its a neurology issues, and leaves. The nurse I loved so much comes back a few minutes later to tell me that they were taking me upstairs. When I asked who the admitting doctor was they told me it was Dr. Pleasant Pants that I had just seen. I was less than thrilled.

Once I was taken upstairs and settled into my room, a neurology doctor who I didn’t know showed up to see me. And AGAIN for the THIRD time in less than three hours, this doctor identifies herself and before I can say anything she says “I DO NOT GIVE NARCOTICS FOR MIGRAINES, JUST SO YOU KNOW.”  Yet again I had never asked for an narcotics or even actually thought about asking for one.  Like the two before her she was also making an assumption about why I was there and what I wanted before even seeing me. By this point in the day I had nothing to say I was so blown away that I just looked at her. I didn’t have anything to say I just agreed with her plan of care and went on with it. At that point I would have tried anything to get the headache to go away. And anything I would have said in that moment to this doctor would not have been nice or helped my case in any way.

Sadly, during my entire four day stay in the hospital there was only one nurse that would actually give me my home pain meds. In fact she actually brought them to me without me even having to ask for them. The other nurses didn’t think I needed them because I was getting “the migraine cocktail!” And that is true, I didn’t need my home meds for the headache, I needed them for the rest of my body. All the other parts that hurt besides my head.

I know, everyone is all in an uproar by the new changes that may be coming with narcotics and the doctors are being more careful with what they prescribe and to who. But anyone could look at my record if they really took the time and see that there is more than enough reason for one or even both of the medications I take. And if they looked more closely they would also see that my scripts last me on average 45 days rather than 30 because I don’t take them as often as they are prescribed. If they took time to look further than the med list they would see a person. A person who believe it or doesn’t really care for the way pain medicine makes me feel. I don’t enjoy being nauseated and itchy when I am already itchy all the time from my illness.

It just frustrates me to no end that the people in the world who have abused the drugs have totally messed things up for those of us who need them. Because people choose to take narcotics to get high it is becoming increasingly hard to get pain meds for people who really truly need them. Many of us need something to be able to get out of bed in the morning. Or to take a shower, or to do any daily task. But because of those idiots many are being refused. And sadly there have been a number of suicides in the chronic illness community due to the fact that they were refused the pain meds they relied on.

I have not shared this earlier because it took me awhile to process it. To really think about how it made me feel and how I could share this best to get my point across without sounding like I was whining. I just wish medical providers would look further than a med list. Or even the list of diagnoses. Behind those things there are people, people who never asked for these life altering diseases, people who didn’t ever do anything to deserve the fact that we are living in chronic pain. Many of us who really need the pain meds would not be able to function or have any semblance of a normal life. And if it comes to the point when none of us have access to those meds a lot of us wont be able to get out of bed, much less work and be a productive member of society. Many of us would gladly trade every last pain pill for the ability to go back to the life we had before we got sick. If i could turn in my pain meds and magically be healed i would be the first in line. Sadly, that doesn’t happen! I can’t speak for all of the people with chronic pain due to a chronic illness, but personally I have tried all other methods of pain relief. I have tried meditation, acupuncture, massage, physical therapy, water therapy, over the counter meds, pain rubs, heat, ice. You name it, I have probably tried and it just doesn’t work the same way that pain medicine does.

At this point the only thing I think we can really do is to start writing letters. Letters to those who represent us in our local, state and federal government.  I am not a political person and I normally don’t include things like this in my blog but I think this is all we have left. I think its time for a CALL TO ACTION for all of us who suffer from chronic pain. We have to be proactive and start writing letters, telling our stories and getting them out there. If we don’t share them, who will ever know what we really live through on a daily basis. They need to know that we are being treated the same as drug seekers, the same as drug addicts or not being treated at all. They need to know that we didn’t choose this life but it has happened and we are doing out best to make the best out of the hand we were dealt and having out pain medications taken away is not the way to do it.

I know in the past people have probably assumed I was drug seeking because when you present to the ER, for a migraine or back pain or a lupus flare that causes pain all over the body they can’t see it. They don’t see our pain on a lab test or an X-ray so they just assume that we are just there for the meds.  When it reality we just want to do whatever it takes to get the pain away even if that’s just a shot of steroid. Healthcare workers have sadly become so jaded by the “opioid crisis” that they can’t see past it. I know from many years of experience as a nurse that it is easy to assume that drug seeking is occurring when someone asks for pain medicine without asking any further questions.  We have to start advocating for ourselves, as I always say if we don’t advocate for ourselves no one else will.  Sadly, I did not do a good job of doing that this time around  because I felt so bad. But I wont stand to be treated like this again.

I am lucky to have a multiple people who act as advocates for me for, will stand up and fight for me when I can’t. My Mom has become my biggest advocate as she has sat in the ER waiting rooms and at my bedside hours in end without complaint. Just to make sure that i get what I need. Many times she is my voice when I can’t speak up for myself. If you are in a situation where you don’t feel as though you can stand up for yourself take someone with you. If you can, take a family member or a friend with you to the ER or to the Dr to help make sure you get the treatment and care that deserve.

If you need any help writing letters to your representatives or finding who your representatives are please let me know and I will be more than happy to help you however I can

Please take the time to also share this story in your communities. We have to get our stories out there, we have to find a way to be heard.

With Love,

Amber

Six Spoonie Summer Must Haves

No one has to state the obvious, that Summer is HOT. But many don’t think about how hard the summer months can be a hard time for Spoonies! We may nit admit it, but it is really hard not being able to be a part of the activities our friends/family love doing in the summer. In fact it can be just plain disheartening. Especially for those with certain conditions or taking certain meds that cause sun sensitivity like Lupus or certain antibiotics. After spending time sulking indoors for a period of time while your friends and family are out at the pool or at the ball-field, you find ways to get back outside to enjoy your time with friends and families. So today I want to share a few summer MUST HAVES that every Spoonie needs to have to get through the summer.

1. SUNCREEN

For spoonies especially those with lupus, Sunscreen is a MUST. I asked around and this brand was mentioned the most.

My TOP PICK: Sun Bum Sunscreen

PRICE: Around $12

WHERE CAN YOU BUY IT: Amazon

WHY IT IS BEST: This product is so well liked because it is gentle enough for kids and adults and can be used on a daily basis. Also due to the fact that it protects from UVA & UVB rays which many other products don’t. It is also very important that this product is hypoallergenic and is made with reed friendly (VERY IMPORTANT) ingredients. While also helping to prevent premature aging, while moisturizing the skin. This product comes in SPF 15-50.

***Example if your normal skin would burn in 10 min without any protection so a 30 SPF sunscreen would provide 30 times the protection of sunscreen. Meaning it will take you 30 times that original 10 minutes, 300 minutes.***

2. SELF -TANNER

As I mentioned above, many spoonies have a sun sensitivity so walking around pale is the norm! However, with this product those who can’t spend time in the sun can still look like they spend time in the sun! I tend to run in the Casper family and I often joke that you can almost see through me. So any self tanner that works and doesn’t leave me orange is great for me. I miss being able to be in the sun at least for a little while. But being sick just to get a little tan isn’t worth it!

My TOP PICK: Senegence Self-Tanning Bronzing Coconut Milk.

PRICE: $50

WHERE CAN YOU BUY IT: www.senegence.com/kissthislips.

WHY I LIKE IT: One of the biggest reasons I love this product is that it has seneplex complex in it, which increases your cellular turnover by 23%. And provides anti-aging benefits while getting that sun kissed look we all dream of. The product gives you a long lasting streak-free, Orange-free tan. That is visible in as few as a couple hours and will last for 3-7 days, and you can reapply every 2-3 days to maintain the tan you want.

**Note- make sure to exfoliate before applying this tanner in order to get the best tan possible.

** Each bottle should get you between 10 & 15 uses which would make it much cheaper than going to a tanning bed

3. UPF/UV SUN PROTECTION CLOTHES

There are going to be times when you want to, or have to be outside. Whether it be going to a family party, or doing some work in the garden. In either case spoonies need something to protect them from the sun to help minimize the negative effects that they may experience from being in the sun. So the best we can do aside from staying in, or sunscreen, is to wear UPF/UV Protective Clothing.

What is it: UPF stands for Ultraviolet Protection Factor. This indicates what fraction of the suns UV rays can penetrate the fabric. A shirt with a UPF of 50 for example, will allow just 1/50th of the suns UV rays radiation to reach the skin. The higher the UPF, the higher the protection. In general fry fabric is going to be more protective than wet fabrics.

Price: Ranges from $15-$50 per item.

Where Can You Find It: Walmart, Ahtleta, Lands End, Amazon, Coolibar, LL Bean and many more.

Why I Like It: Three simple reasons: they are lightweight, they protect me from the sun, and they wick moisture away from my skin!

***Remember that covering your skin isn’t enough. If you can see your skin through the fabric the suns rays can also get through. So make sure that in order to provide full protection, that you can’t see through the fabric.

4. Maxi Dresses

Why I Like Them– I chose this item to make my summer must have list because I personally live in these dresses during the summer. They are light weight and comfy and they don’t feel tight on your belly or any part of your body that might be hurting. They are also great for outdoor events because they cover your legs like you need but also allow air to pass through so they aren’t as hot and restricting as Jean or jeggings might be.

Where Can You Buy Them: Any where dresses are sold!

*** I prefer to get mine from Old Navy, as I find them the most comfortable and for the best price

Prices: This can be a wide range of anywhere from $10 to several hundred dollars

5. Ozark Tumbler

What is it/Why I Like It: Everyone knows about the Yeti coolers and tumblers, but the Ozark tumblers aren’t as common. In my area they are very well known and in my opinion are just as good. For Spoonies it is essential that we stay hydrated because our bodies need it, especially if you are going to be out in the heat. I have tested it out and I can keep ice in my Ozark Tumbler for 18-24 hours!

Price: Price varies depending on size, from $6-$22.

Where Can You Buy Them: Walmart, Amazon

6. Hats

Why I Like It: Whether it’s a ball cap or a wide rimmed hat, they are an essential part of the spoonies wardrobe. Not only are they good on a bad hair day, they also work to keep the sun out if your face. When worn in combination with the sunscreen it’s a great way to save your safe from being burned.

Price: Varies

Where Can You Buy Them: Anywhere hats can be purchased.

I hope you all enjoyed my summer must have list! I just wanted to share a few things I have to have to get through the summer. I would love to hear about some of your summer must haves. So please leave a comment below and let me know one thing that is on your must have list to help you get through the summer!!

With Love,

Amber

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…

What Abbreviation CDC Means For The Chronically Ill

When you hear someone say CDC I’m sure the first thing you think of is Centers for Disease Control! I thought the same until earlier this year. In early spring I joined a twitter chat on Healthcare and insurance issues faced by the chronically ill. It was a great chat and I felt a lot of issues were brought to the forefront. Due to this chat I found (they actually found me) a great organization called The Chronic Disease Coalition (CDC). Once I took time to look into the organization, I really liked the work they do – advocating for those with chronic illness by promoting awareness and encouraging all to take action Per Below, I will tell you more about this incredible organization and how you can become involved if this is something that speaks to you!

The nonprofit organization was founded in 2015 with the goal to create a platform for people with chronic conditions to speak out and take action to make a difference in their community, state or even across the United States. The CDC dedicates their time to protect patients’ rights and fight against discriminatory practices or policies that prevent patients from accessing care. Since the day they became an organization they have focused their efforts to advocate for people who live with lifelong chronic conditions like, MS, diabetes, lupus, kidney disease and cancer. The CDC promotes awareness and education in hopes that they can raise public awareness of the chronic health issues that we deal with on a daily basis. They do this in conjunction with encouraging other to engage in advocacy and provide advocacy tools that help fightagainst discriminatory practices As a whole, they recognize that we are strongest together, so they enable supporters to speak out and do the same when help may be needed to protect the rights of all patients.

One of the big things that this organization spends a lot of time on are the health issues that are being dealt with by the government at both state and federal levels. They really encourage us to get involved with any issues that may put patients lives or access to care in danger. Recently, they have been focusing a lot of time on the opioid crisis. Many have written letters, sent emails or called their representative to educate them on the issue. They have also been focusing attention on legislation across the country that would allow insurance companies to reject coverage for individuals simply because part of their medical bills are being paid by nonprofit organizations! This could mean that people would be unable to receive care of any kind, and would be especially dangerous for those who rely on treatment to stay alive.

If you visit the CDC Website you can find the facts on all the issues that have resulted from insurers, policymakers and others within the health space, trying to cut corners and increase their profits and the patient’s expense. They provide information about the problems that the chronically ill may face with insurance companies, in the workplace or at school! The website also gives you the options of sharing your experience dealing with all the issues brought upon by chronic illness. As well as the option to take action and write your legislators about some of the big issues like the ones mentioned above.

You also have the option to join the coalition.When you join the coalition you will receive information on the important issues and alerts when they need you to help stand up for patients rights. I joined the coalition in March of this year, and it has been a great experience. I have learned so much and realized just how much I didn’t know about the real issues at hand. If you are concerned that they will overtake your inbox with alerts and such, that is not the case. I may get as many as 5 emails a month. In those emails we receive information about bills that we need to focus on or ways that we can help spread awareness or act as an advocate.

I asked a few of my “co-advocates” why they decided to join forces with the CDC and this is what they said.

I am an advocate because it seems like a lot of what we go through is unspoken in our society. I really want to bring a focus to those of us who struggle with chronic diseases and pain on a regular basis. I want lawmakers to know what we go through, so they can make informed choices, instead of voting against our interests. -Gwendolyn Bahu

I chose to become an advocate because I don’t want anyone to go through what I have with endometriosis or any other illness. Chronic diseases are debilitating and wreak havoc on every aspect of our lives and desperately need more funding and awareness. I decided to be part of the Chronic Disease Coalition to help others and bring more awareness to chronic illnesses. – Samantha Bowick

If this organization sounds like one you. would liked to get involved with make sure to go to their website and find out more about getting involved. It feels so good to know that you are working on something that could impact thousands of lives.

With Love,

Amber

**All pictures used for this post were taken from the CDCs Website with approval**

What You Need To Know About Headaches……..Part 2

In the first part of this series we discussed the different type of headaches and the possible causes. We also discussed the number of people in America who deal with headaches. I was actually shocked to find that more Americans present for care of headaches than any other condition. Now that we have looked at the kinds of headaches and the causes let’s take a look at how headaches are diagnosed.

In order to be able to get proper treatment of your headaches, a proper diagnosis is necessary. In order to get the proper diagnosis your doctor will need to ask you about your headaches. They will most likely ask questions about the characteristics of your headaches, and any symptoms that come along with your headaches. The following questions are examples of questions you can expect to be asked.

Headache History

As you are asked these questions it is imperative that you answer the questions to the best of your ability.

  • How old were you when you began having headaches??
  • Do you experience one kind of headache (like migraines), or do you think you have more than one type of headache (migraines, sinus, hormonal headaches) ?!?
  • Do you know what causes your headaches? (For example, do certain situations, locations, food or medications trigger your headaches)?
  • Does anyone in your family have headache?
  • What symptoms if any occur between headaches?
  • Has your school or work performance been affected by your headaches?

Headache Characteristics

During your visit to the doctor it is very important to tell them how you feel when you get a headache, any sensation before the headache and what happens (if anything) when you get the headache.

  • Where is the pain located?
  • What does the pain feel like (throbbing, aching, pounding)?
  • How severe is the pain on a scale of 0 (no pain) to 10 (severe pain)?
  • How long do the headaches last?
  • Does the headache appear suddenly without warning, or gradually with accompanying symptoms, or a combination of both?
  • Do your headaches occur at the same time of day?
  • Do you have any kind of aura (change in vision, blind spots, seeing flashing lights) before the headache starts?
  • What if any symptoms or warning signs occur with the headache (ex weakness, nausea, sensitivity to light or noise, appetite changes, change in attitude or behavior)?
  • How frequently do your headaches occur?

It is important that you tell your doctor if you have been treated in the past for your headaches, and if so by what doctor. It is also important for the doctor to know what medications you have taken, or if you have taken any over-the-counter medications. If you take a lot of medications it is okay to bring all your medications in a bag to your appointment or ask your pharmacy for a print out. You should also share during your appointment if you have had any diagnostic studies (X-rays, MRI or CT Scan) because of your headaches, and where they were done so the doctor can get copies of the reports. This can save time and money by avoiding duplicate studies.

Physical and Neurological Exams to Diagnose Headaches

Once the provider has finished taking a full history of your headache events and symptoms they should continue on and do a full physical and neurological exam. During this exam they provided will look for any symptoms of illness that could be causing the headache. They will be looking for any of the following:

  • Fever or any abnormalities in pulse, blood pressure or breathing
  • Infection
  • Nausea &/or vomiting
  • Any changes in personality, or any inappropriate behavior
  • Confusion
  • Seizures
  • Loss of consciousness
  • Excess fatigue, or wanting to sleep all the time
  • Any muscle weakness, tingling or numbness
  • Difficulty with speech
  • Any problems with balance
  • Any recent falls
  • Vertigo or dizziness
  • Any changes in vision

The neurological test that will be done are done to rule out any disease or issues with the brain, or any nerve issues that could be causing the headaches. There may also be done to look for any physical or structural abnormality of the brain that could be the cause of the headache. They are looking for things like tumors, infection of the brain, bleeding on the brain or any excess fluid on the brain.

While it is not necessarily a normal part of diagnosing headaches, you may be sent to a psychologist for evaluation. An appointment with a psychologist may be made to help identify any stress factors that could be triggering the headaches. If you are sent to a psychologist you will more than likely be asked to complete a computerized questionnaire. The questionnaire is used to provide much more in depth information to your doctor.

After you have seen the required doctors, they may decide to order further testing to help them determine what is causing your headaches. However, if you are experiencing migraines, cluster, tension or hormonal headaches the blood tests will not show anything definitive. They might order any of the following:

  • Blood tests like a complete blood count (CBC) or a basic metabolic panel (cmp), and a urinalysis. With these tests they are looking for conditions like diabetes, problems with the thyroid or infections that could cause headaches.
  • A CT Scan maybe ordered if you are having several times a week or daily headaches.
  • A MRI may be ordered if you are having daily or almost daily headaches or as a follow up if the CT Scan does not give a definitive answer. An MRI may also be ordered to get a better picture of parts of the brain are not easily visualized with a CT Scan.
  • An X-ray of the sinuses may be ordered if the provider thinks the sinuses are the cause of your headaches.
  • An EEG is not a standard part of a evaluation of headaches. But it may be ordered if your provider thinks you could be having seizures.
  • Eye Exam – Your provider may have you get an eye exam to check the pressure in your eye in order to rule out glaucoma or increased pressure on the optic nerve.
  • A Spinal Tap May be done to look for conditions such as an infection of the brain or spinal cord, or an increased amount of cerebral spinal fluid which could be a cause of your headaches.

Once you have seen the doctors (your primary care, a neurologist and possibly a psychologist) and a compete headache history, physical, neurological and psychological exams have been completed your provider should be able to determine what kind of headache you are having.

Now that we know what kind of migraines there are as well as what causes them. And we have looked at what may be done to diagnose said headaches. Now in the final part of this study on migraines, which will post in a few days. We will spend some time looking into treatment options for of the kids of headaches we have discussed and diagnosed.

So stay tuned for part 3, later this week!!!

With Love,

Amber

What You Need To Know About Headaches……. Part 1

June is headache awareness month, so let’s take some time to look at all things headache. There are said to be 150 different kinds of headaches from cluster headaches to sinus headaches. And the most commonly known, migraine headaches. Each kind of headache contains some kind of pain and that pain can be located indifferent parts of the head based on the kind of headache! We will also look at other symptoms that accompany the headache that range from nausea to double vision. Below in part one of a three part series we will talk about the types of headaches that are most common, as well as possible causes for headaches overall. So let’s just jump right in!

Most Common Types of Headaches

The two most common kinds of headaches are tension headaches and migraines so we will discuss those first.

Tension Headaches– These are the most common type of headache among teenagers and adults. Generally, this type of headache causes mild to moderate pain and come and go over time. On most occasions they have no other symptoms. It is said that 80-90% of the population suffer with this kind of headache at some point in their life. Overall, 80% of women and 69% of males will experience tension headaches. With age of first onset is usually between 9 & 12 years of age.

Migraine Headaches– These Headaches are often described as “intense.” The pain from a migraine is often described as pounding or throbbing pain, and often last from a few hours to a few days at a time. The frequency is going to be different for everyone but on average happen one to four times a month, or potentially more. Sadly most who suffer from migraines also deal with other symptoms that accompany the headache. The symptoms can range from person to person, but the most common are sensitivity to light, noise or smells. Migraines can also bring on nausea and vomiting, loss of appetite, belly pain or upset stomach. For children with migraines their symptoms can be different. They can look pale, feel dizzy, have blurry vision, a fever or an upset stomach.

Research shows about 16-17% of the population will suffer from migraines at some point, with the median age of onset between 5-8 years of age. Migraines are by far the most debilitating kind of headache. It is said that 25% of women and 8% of men suffer from migraines. Research shows that 60% of migraines present on one side of the head. 80% of migraine sufferers report that there are some kind of trigger that causes their headache. Just to give you an idea of how many people suffer from migraines and how much of their lives are dedicated to dealing with migraines. It is reported that 157 million work hours are missed each year due to migraines.

Other Types of Headaches

Cluster Headaches– Those who experience these headaches say that this type of headache is intense and feels like a burning or piercing pain behind or around one eye, and is usually throbbing or constant. It is the least common type of headache but often causes the most severe type of headache. People who suffer from these headaches often say the pain is so severe that they can’t sit still and will often be seen pacing during an attack. The pain is often said to be one sided and the eyelid can droop on the side of the pain. The eye may redden, while the pupil decreases in size or tears. The nostril on the side of the head where the pain is can either run or feel stuff. The reason they are called cluster headaches is because they tend to happen in groups. They may happen one to three times a day during a cluster period, and that period may last 2 weeks to 3 months. And each single headache attack may last 15min to 3 hours and may often wake the patient up from sleep! The headaches may disappear or completely go into a state of remission for months or years. Cluster headaches affect men three to four times more often than women.Sinus Headaches- These headaches often cause a deep and constant pain the cheekbones, forehead or bridge of the nose. They are caused by the sinus cavities in the head becoming inflamed. The headache usually does not come alone, it is usually accompanied by a runny nose, feeling of fullness in the ears, a fever, and even swelling in the face. A true sinus headache is caused by a sinus infection, which usually causes yellow or green discharge from the nose, unlike the clear drainage noted in cluster or migraine headaches.

Hormonal Headaches – Last but definitely not least. These headaches are seen primarily in women. They happen from changing hormone levels during menstrual cycles, pregnancy and menopause. Headaches may also be triggered by birth control pills in some women.

Most Common Causes of Headaches

What actually causes the pain of a headache? The pain that is felt during a headache comes from a mix of signals between the brain, blood vessels and nerves in the area. Specific nerves of the blood vessels and head muscles switch on and send pain signals to your brain. It is not the totally clear why these signals turn on to begin with.

People often get headaches due to:

Illness: Anything from an infection, cold or fever can cause a headache. Also common conditions like inflammation of the sinus cavities, an infection of the throat, or even an ear infection.

Stress: Any kind of emotional stress or depression, as well as alcohol use, skipping meals, change in sleep patterns or taking too much medication.

The environment: things like being around secondhand smoke, strong smells from cleaners or household chemicals, perfumes, allergens, certain foods, pollution, noise, lighting, and weather changes are possible trigger

Trauma: In some cases headaches may be caused by a blow to the head or rarely may be a sign of something more serious.

Other causes can include things like: eyestrain, neck or back pain, poor posture and even to much exercise.

Sadly, Headaches especially migraine headaches, tend to run in families. Most kids and teenagers (90%) that have migraines often are not the only one in the family. Most of the time there are other members of the family who also suffer from migraine headaches. Kids who have two parents that have a history of migraines have a 70% chance that they will also develop migraines. If only one parent has headaches the risk will drops to between 25-50%.

America complain about headaches more than any other medical condition. It is said that there are approximately 45 million Americans who complain of headaches every year. If you break that down it works out to one in every six people or 16.54% of the population who deal with headaches. Research shows that more than 8 million Americans will seek medical treatment for headaches EACH YEAR!

Headaches impact a huge number of people every year. The the causes of headaches are multifaceted, and will impact every body differently. There are over 150 types of headaches and they are each slightly different than the next. What causes one person’s headache may not cause the next persons. Be on the lookout for the next part of this series, during which we will be looking at how headaches may be diagnosed. And in the last issue of the series we will be looking into treatment options for migraines.

With Love,

Amber