My Open Letter To Lupus

Dear Lupus,

Back in 2012 I was happy and just going about my life and was actually very excited about where my life was taking me….

But you couldn’t leave it that way. You just had to make yourself known. You came into my life like a hurricane. You set me down a path that I had no say in and was not really ready to face. No one asked you to leave that dormant state you had been living. And you certainly weren’t given an invitation to become the center of my life. However, you did just that and in the process changed just about everything I knew and was comfortable with. 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.

📷 Hannah Busing/ instagram.com/hannahbusing

Looking back, I can see that you made yourself known and reared your ugly head the first time when I was in highschool. Although no one called you by your proper name. Instead they kept telling me that I had a bad case of mono. Mono that lasted SIX MONTHS?!?! Really?!?? Being a teenager I always wondered why the simplest tasks made me exhausted and how the people around me could go-go-go for hours, when I couldn’t. It was because of you LUPUS.

You went away for several years for the most part and I was grateful. Even so, I continued to wonder through the rest of high school and college why I couldn’t be as active and involved like the kids my age etc. it was bc of you. Damn you for taking away my years when I should have been having fun!

📷 Erwan Hesry/erwanhesry.com

Finally six years ago you officially made your move. You moved in for good, and brought all your baggage. Although we never discussed this, and 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 that seems so long ago you’ve made my life or a good part of it a living hell. Because of you I have lost friends 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 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. Because of you I had to walk away from my nursing career after only 11 years. I planned on working in the medical community until I retired. But you once again had another plan. And your plan won, even though I didn’t agree. But the biggest problem I have with you isn’t related to losing my career, or friends. My biggest issue is how hard you’ve made it for me to be able to watch my sister play ball. She is one of my very favorite humans in life. And watching her pitch is one of my all time favorite things to do. But because of you I was virtually unable to do the last couple of years. Mainly due to the intense heat intolerance I developed due to Lupus. And the other issues that the heat causes for me, like headaches. And it literally has broken my heart. This summer was the last ball season of her career and I only got to see her once. I know she understands but it still hurt me so much.

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 conditions that go hand in hand with you. I can never thank you enough for your generosity. You brought all your friends (other medical conditions) along with you when you moved in. I didn’t want you and I definitely didn’t want any of them!!!

I have decided I am done, you have been “kind” enough. But now it’s is time to go away and take all the “gifts” you’ve brought with you that are also not welcomed here.

📷 Joshua Coleman/ joshstyle.com

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 friend endometriosis, carrying my own baby is no longer possible. My lifelong goal gone in a second. I have always wanted to adopt so I know that’s still an option. But it’s still not quite the same as having your own baby. But I will be greatly appreciative of any child that God gives me.

When you leave you can also take the 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. At times of big flares, illness or hospital admission my blood pressure can drop and stay in the 70’s and 80’s. Also because of you I have spent more time in the ER/Hospital in the last FEW YEARS than one person ever should IN A LIFETIME.

I’m tired of all of you. Tired of all 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 more ways than I can count. I’ve lost the majority of my local friends, I can no longer work on gaining a degree to teach nursing school because of you. You have even made it very very hard for me to hold down a job. You need to pack up and get the hell out of my life! GO. GO I tell ya!!

One thing that keeps me going is mysister’s unwavering faith in God. And her prayers. Because of her I have been able to find my relationship with the Heavenly Father again. Because of that I now 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

Giving Up or Giving In

Giving up? Or Giving in? Have you every really thought about the difference or how either one could impact your life? I think it’s safe to say that most haven’t put much time into the meaning or impact of those two similar statements. And if they have it’s probably because they are staring adversity in the face. For anyone who has ever gotten a piece of news that was life altering, whether it be about a job, their health, or their family, giving up has probably at least crossed their mind. The same goes for anyone living with a chronic illness. The diagnosis in and of itself can lead to feelings of wanting to throw in the towel. Not to mention living with that condition for the rest of your life. Eventually we will all come to a point in life where we have to decide if we are going to give in and make changes and learn to live our life to the fullest or give up and throw in the towel!

So whats the difference between giving up and giving in? For many giving up causes them to feel as though they have failed. Like they weren’t strong enough to be able to handle the situation at hand. While giving in is more like surrendering. It is more like you are accepting that you can’t change certain things and are open to finding a way to deal with the situation that is positive and can be done within your limitations.

Lets take a moment and look at some examples of the difference.

Giving Up: “The pain is just to much! I can’t handle it. I am done trying to do anything but stay in bed.”

I know we have all felt like this from time to time and that is okay. That being said if we want to continue doing the things we like to do we have to change our mindset and put a different spin on how we look at our pain. Because for many chronic pain is going to become the new norm of sorts, so staying in bed for the rest of your life isn’t a valid option.

Giving In: “I know I cannot control my pain level as much as I would like to. I am sad and frustrated but I will show myself some grace. I will rest when the pain is bad, and do all the things in my power to deal with the pain. I know the pain may slow me down, but it doesn’t have to completely change my life.”

There are going to be days  when the pain is at it’s worst and you are going to want to give up. And that’s okay. A day here and there where we feel defeated is natural. But to live the life we want to live we have to change our mindset and not allow the pain to change the things we enjoy or who we are at our core.

Yuris Alhumaydy, instagram.com/y.rss

Giving Up: “I can no longer do the job I loved so much, therefore I am useless”

This is a BIG struggle for many with chronic illness. When our lives are impacted in a way that we are no longer to do the job we loved it is easy to feel useless. Although it is likely that you are your own worst critic and no one else is viewing you as useless.

Giving In: “I wish I could continue to do the job that I loved so much, but that is just not possible at this point. But maybe I can find a job that I enjoy doing, that is less physical and will not cause my disease to flare.”

Losing the job you enjoyed so much is hard and chances are high that you will question your self-worth. That’s okay for a short time and then you need to realize that you didn’t give up your job you gave in. Take some time to mourn the changes that occurred and then start looking for something you can do that is better for your health. It is likely that when you find something that is better for your health it will also be better for your psyche.

Thought Catalog, thoughtcatalog.com

Giving Up: “The girls are going out to dinner and dancing. I won’t be able to keep up with them dancing so I just won’t bother going at all.”

It is hard when you can’t keep up with your friends and do the things you used to love to do. We have all been this person though, we feel like since we can’t enjoy all the activities shouldn’t go at all. It is easier to say you can’t go rather than leaving in the middle of the evening when everyone is having so much fun.

Giving In: “I know I will never make it long enough to go to dinner and then dancing with the girls, so I will just go to dinner.”

Even though it often feels like we shouldn’t bother going for just part of an evening out it really is a good way to give in.  You don’t have to give up on the whole night out with the girls, you just do what is best for you. It is good for you to get out of the house and spend some time with your friends.

Ben Duchac

Don’t get me wrong, there are going to be hours, days or even weeks where you just want to give up.  You’ve had a bad day, your condition is flaring, you are in pain and crawling into bed and hiding from the world seems like the best option.  And while it is a natural reaction and okay to do for awhile. It is not good for you or your health to live in that negative space.  There are things that we will give up on, like friendships or relationships with people who didn’t care enough to stay around once you got sick.  But, that is something that we didn’t chose to give up, they did. We can never change someone else’s thoughts or feelings, and if you try chances are you will fail. In situations like that it is better to give up and move on rather than putting time and energy into a failing relationship. In the long run you have to focus on YOU and what is in your best interest. Doing things that make you happy and won’t cause your disease to flare. If that means missing a night out here and there, or quitting a job that is too hard for you to continue doing then that is what has to be done.  In the end we all need to find a way to show ourselves some grace and give in not give up.

With Love,

Amber

7 Things I Learned From My Chronic Illness That I Never Knew As A Nurse

I can’t even begin to count the number of times I have been asked what I have learned from my illness. I also get asked what if anything I have learned about the Healthcare System from being a chronic patient that I didn’t learn in all the years I worked as an RN or the years I was in school for my nursing degree. The first few years not much came to mind. But the longer I have had to deal with a chronic illness, the more doctors I have seen, the more insurance companies I have to fight, I have definitely learned some things that my education or work experience NEVER taught me. You may be thinking, how is that even possible, you went through more than 4 years of Nursing Education and worked in the healthcare field for over ten years, how would being chronically ill teach you anything that you didn’t already know? Well that is easy. During nursing school or during all those years I worked in healthcare I wasn’t the patient. I was the caregiver. I didn’t really see what the patients had to deal with just to get the treatments they needed, and I didn’t see the judgment that patients feel from the healthcare staff. I will just be completely honest, you have no idea as a healthcare provider what it is like to be on the other side of that bed until you have been on that side yourself!! So lets just jump right in!

Rawpixel.com

1. The real meaning of a Chronic Illness – One of the BIGGEST things I have learned from my illness seems silly but I want to be honest. I have learned the true meaning of a CHRONIC ILLNESS. When I took care of patients in the hospital who had a chronic illness it NEVER really hit me just what that meant. I never realized exactly what chronic meant and just how much of their lives are impacted by their chronic disease.

2. Sympathy and Empathy – These are entirely different entities. It is very different sympathizing and trying to understand where someone is coming from. Now that I can empathize as both a patient and as a nurse it has changed my outlook as well as how I interacted with patients and their families. I learned how and why chronic illness patients seem more guarded and at times more fearful than your average patient.

Annie Spratt, mammasaurus.co.uk.store

3. Use of medical jargon – While I was working as a nurse I never realized just how often medical professionals use medical jargon. Most likely because i was using it to. Luckily I understand most of it as a patient. But when I am having one of my bad migraines it is often hard for me to really understand much of anything. It was those days that made me so much aware of just how often medical terminology is used to explain things to patients and families rather than lay terms.

4. Dealing with judgement – Sadly, through the last six years I’ve had to learn how to deal with judgmental medical staff more than I ever expected. Before I got sick I never realized how quick medical professionals are to judge (myself in the past included). Since being sick with an invisible illness I now know how it feels when people assume things about you based solely on your appearance and not your medical history. Or how it feels when people assume you are drug seeking based on your medical diagnosis before they even come and talk with you. This made a huge impact on me and how I practiced nursing.

5. Being Aware of The Cost of Procedures, Treatments, Treatment Centers & Medications – I’ll be 100% honest and say that when I was working ICU Step Down I was not aware of the cost of probably 95% of the medications and treatment modalities we used for our patients. It wasn’t because I didn’t care, it was simply because I had to know so many other things that this information would take a back seat. On the other side as a patient I am much more aware of what medications cost and how much MRI’s or CT Scans will cost and what my out of pocket will be. Simply because I have to pay for it. I feel like there is a break down between providers and patients on this topic. The providers want the best treatment no matter the cost. But the patient would usually prefer the best treatment for the cost. Learning this as a patient definitely changed things I did in my practice. Because I knew what it was like to hear your new medication was going to cost $25,000.

Fabian Blank

6. Honoring Time – What I mean by this is that when you’ve asked for something for pain and the nurse says “I’ll be right back,” or “I’ll be in at 5pm” with pain meds. But they don’t come back for 30 minutes or until 5:15 those minutes feel like hours. As a nurse I always tried to get right back or to go when I said I would. But I never truly understood just how long those 10 or 15 minutes I was gone really felt. When you are hurting or feeling sick to your stomach those 15 minutes may feel like 4 hours!

7. Trust the patient/listen to patient regarding what works for them. I think as a medical professional it’s easy to work based on knowledge or experience. But it’s really important to listen to the patient in regards to what works. I’ve learned this because of my migraines. I’ve dealt with them so long that I know what is going to help and what is a waste of time. And I really appreciate the doctors and nurses who listen to me and don’t just throw meds at me because of what they “always give” for migraines.

Needless to say, I have learned so much from being a patient with a chronic illness. I feel like that in some strange way it actually made me a better medical provider. As you can imagine after working in the medical field for many years I have many friends who remain in that field. And due to the things I have experienced with my chronic illness they have been able to learn and improve on the way they practice and treat those they care for who are in similar situations. I will always stand by my feelings that every medical provider should have to be a patient for at least a short period so they can experience things from the other side of the bed. So they can have the full patient experience. Their views on the way they treat patients would be forever changed like mine. That being said, a chronic illness is not something to joke about; however, it has given me a view into a world that I felt I was fully enveloped in, which I had never fully seen before. And for that I will always be grateful.

With Love,

Amber

A Day In The Life…..Chronic Pain

Co-written by Amy Nora

Chronic Pain… is just that. It’s chronic, meaning it’s something we live with ALL the time. It is not the same as stubbing a toe or knocking your knee on the corner of the table.  There is no cursing or exclamation of words and a few minutes later life is perfectly normal and you are moving on.  Nor is it like breaking a bone, wearing a cast and being done with the pain and annoyance 6 months later. Chronic pain forces you to live differently.  Life becomes methodical, more deliberate in the actions we take, and how we live our lives.  This includes the simple things like getting out of bed, going out with friends, cleaning, or trying to cook a meal.  You live you life in pain; therefore, you come to accept various levels of pain as normal.  This does not mean that you would constantly rate your pain a 10/10, you may rate your pain as a 2/10.  However, you had to stand and make a sandwich so now that has spiked to a 7/10.  This is a fight fought daily by millions of Americans with degenerative diseases or chronic medical conditions.

I wanted to give you all a look into a day in life of living with chronic pain. But I decided to go about it a little differently. My friend and frequent contributor Amy Nora and I will both be sharing our views of what like living with chronic pain is like. As living with chronic pain can look very different for different people.

Amber’s Story

I feel that there is so much negativity in news about pain and pain medication these days with all the issues with the changes in the rules and regulations with narcotic prescriptions. There are people killing themselves because they can no longer receive their meds. Others are being fired from their Pain Management Doctors because they don’t take their pain meds frequently enough. We have all heard the stories. But I don’t want to focus on THAT today. I want to bring light to what a real day of someone with chronic pain is like. I want to talk about what a day with multiple conditions that cause chronic pain can be like. I think many people have a stigma in their mind that people with chronic pain take their pain meds and may have some pain everyday, but most of their day is spent doing what they want with no big issues. Just so we are all on the same page here’s a point of reference: besides taking pain medication I also use a combination of heat, hot showers, massage, muscle rub and yoga to treat my pain. I do suffer from multiple chronic illnesses that cause chronic pain, I live daily with Lupus, Fibromyalgia, Debilitating Migraines, Endometriosis, Interstitial Cystitis as well as undiagnosed chronic back, hip and sciatic pain.

For most people when the alarm goes off or they wake up, they probably start going through the day ahead in their mind. As far as what they have planned, what’s scheduled, what they are making for dinner etc. For me and those with chronic pain the first thing I do when I wake up is lay in bed for about 15 minutes let my body wake up so I can assess my pain. I have to lay there for a little while to let my body connect to my brain so I can really take account of how I am feeling.  I generally start at my head and work down. This morning for example, I started with my head, and the pain was like a 2/10. Continued down to my throat, neck and glands because I have been fighting a cold/sinus infection, that was like a 2/10. Then down to my shoulders, elbows and hands. Left elbow was a 4/10, still not sure what that was about, but it has been happening a lot lately. My hands, about a 4/10 as well. So I start doing some stretches to see if they are just stiff or if they are going to hurt all day. They seem to be stiff and the pain seems to ease with stretching, so that is a relief. Down to my belly, cramps are like a 6/10 as endometriosis causes MEGA cramps when its time for your cycle. My bladder is probably an 8/10, because I didn’t wake up all night and it feels like it is ready to explode. My low back is a 6/10 as is my left hip, and for the first time this week I didn’t wake up with any sciatic pain or pain in my left calf. Which has been very painful everyday this week. Overall, I would say my pain would be about a 6/10 this morning. So now that I have assessed the pain that I woke up with, now I have to decide what I want to do about. Do I go ahead and take something before getting out of bed, or do I wait and see how things go as the morning progresses? That is sadly the question I address each and every morning after I wake up.

Generally, my rule of thumb in the morning is that if my overall pain is over a 5/10, I go ahead and take something for the pain. I have learned that if I don’t the day is NOT going to get better. And I will most likely not be able to get the things on my to-do list done. Or at least not until later in the day. So this morning that is exactly what I did, I took something for pain got out of bed and did my morning stretches that allow me to be able to move in the morning.  Without those stretches, thanks to the fibromyalgia I would not be able to move first thing in the morning.  I won’t bore you with the exact play by play of my day. But at each step of the way I have to decide if I can complete this task or if I should wait and attempt it later. This morning after getting dressed and having breakfast, my first task on my to-do list was cleaning my bathroom, I knew I didn’t feel like it but it can only be put off for so long. For most able-bodied people they could probably go in and get it done all in one fail swoop. For me however, it takes several steps. Due to my pain and fatigue, any multi-step project will almost always require several breaks. Just to clean my small bathroom this morning I had to stop and rest FOUR TIMES!!!! And it took me over FORTY FIVE MINUTES. Even with the breaks, I still had to lay down with my heating pad on my back and abdomen for about 30 minutes before I could go on to my next task.

I continued on with my day the same way as above. I vacuumed and then had to rest and use the heating pad. Then I did some laundry and had to rest. After eating lunch the pain has escalated again to about a 7/10 so I had to quit what I was doing and lay down. Completing simple tasks is no longer simple. It has to be well thought out and planned. That is generally how it goes for most people with chronic pain/chronic conditions. I can no longer just complete a task without resting or taking several breaks. Things that used to be simple and easy are no longer so easy. Everything that is done has to be well thought out.

I miss my time out with friends and family. But a night out or even time at home with friends or family for dinner and a movie requires major planning. Over the years I have learned that if I want to spend a day out of the house no matter what I am doing I better prepare. I need to make sure I rest all day the day before, and maybe two days before. And I know that I will most likely be in bed and doing nothing for several days after. For what seems like a normal day out of the house shopping or an evening out to dinner and a movie to an able bodied person is much different to someone with chronic pain. For example, last week, my little sister played in her last competitive softball tournament. And I just simply wasn’t going to miss it. Sadly, I knew I was going to pay for it because I didn’t feel good going in and it was 95 that day. (People with lupus simply do not do well in the sun.) So I planned ahead and took it easy the day before, and stayed in bed till the last possible minute the morning of, got dressed, and got in the car for the 45 minute trip. I was already hurting (at about an 7/10) by the time we got out of the car, and at that point we still had about 15 minutes to go before the 75 minute game would start. I had taken my pain medication before I had left the house but it wasn’t doing much to relieve the pain. I made it through the game, a quick lunch after the game with the family and the 45 min drive home. After my shower, a COLD shower, I crashed. And I certainly paid for it the next couple of days. Everything you can imagine hurt, my back and hip from sitting, my head from the heat. And just about every joint you can name. I really was hardly able to get out of bed the next day because the pain was so severe. That being said I wouldn’t have changed it for the world. I got to see my sister play one last time. I would have done it 100 times over just to be there especially knowing how happy it made her that I was there to see her play.

If my pain is tolerable and I actually get out of the house like I talked about above when I attended my sisters game. Usually as soon as I get out of the house I am counting down the time until I can get back home to my bed and my heating pad. Generally I can’t focus on whatever I am doing because my pain is such a point of focus. I do enjoy getting out of the house but I can’t help but think about how much I am going to pay for leaving the house. So sometimes we have to pay for the good things in life. It shouldn’t be that way but it just is. We shouldn’t have to deal with all we do, but we do and we learn how to deal with the hand we were given.

Amy’s Story

I had my first experience being treated as a drug seeker this week, which I will tell you about in just a second. But I first want to give you a little backstory. Only a few months ago my family moved to a new state leaving behind the doctors who had treated me for many years. Knowing there has been so many issues with pain and pain medication, on my first visit I brought all of my medical records with me. In the state I moved from, the doctor treating the source of your pain would be the one that prescribed your pain meds.   I discovered that my new Rheumatologist does not write pain meds.  I take a rather mild medication; however, he preferred that my PCP write for anything related to pain.  I use a combination of physical therapies, yoga, tai chi, breathing exercises, rest, heat, massage, and tears to handle and tolerate pain.  Meds were a last resort for me.  In fact, this was a decision that was not taken lightly, and very seriously discussed with my previous doctor.  When I went to my new PCP to get the medication, I was promptly given a long lecture on how doctors are monitored and restricted, and how they are not allowed to write too many of these prescriptions.  They did not look at the scanned records that are in their system, they did not call my rheumatologist.  I was lectured.  I was informed that I had to go to a second doctor to get pain medication, because that practice encouraged doctor shopping.  Something the medical system here should know and discourage; however, this was their policy so I was being forced into this practice not by my choice but by their policy.  A prescription was finally sent to the pharmacy which I picked up the next day; only I discovered the prescription was for THREE DAYS of the medication.  I do not take the max prescribed, I do the best I can because there are no therapies left on the market for us to try.  We are at the end of the proverbial rope.  Asking for help once in awhile should not result in being treated like someone with a contagion that will cause deadly harm.  I feel like physicians are pushing patients into medical marijuana (legal in my state) and can see why patients feel forced to seek illegal options.  When you deal with chronic pain, you learn quickly what things will exacerbate it, what things you do that will make you pay a little bit of a higher price, and things you can do to help here or there.  I have Lupus, Rheumatoid Arthritis, Sjogren’s Syndrome, debilitating Migraines, Epilepsy, and Fibro.

If I am lucky, I wake up and think that my eyes might open properly the first time.  My dog is a service dog and has been trained to help gently wake me.  Part of this is because of pain, but also if I am jarred awake it is a promise of a day with a horrible migraine.  I begin taking stock of what is alive or asleep or wishing it were dead on my body.  One thing with RA is morning stiffness, so often you don’t allow you initial impression of the day define you.  I roll out of bed and hope I don’t actually fall.  The first 15 minutes of the day moving is generally agony; an 8/10 because your muscles and joints have no idea if they even want to move.  This does not include all of the other fun stuff like cognitive dysfunction (you can’t think clearly) or your eyes don’t actually focus (thank you Sjogren’s).  After 15 minutes, sometimes 30 minutes, you have an idea of where you are going to hurt the worst for the day and what you will be dealing with.  Normally, I know that my knees, hips, and lower back will always be a 5/10 and that is just what it is.  If I having a migraine, I automatically medicate for that, and if the rest of my joints are above of 6/10 I will take medication to help with that.  This is when two things hit me simultaneously.  My need for coffee or tea and also what will I be able to do today?  Is it a stuck in bed day?  Maybe I can do a couple things, but I will have to depend on my cane?  Oh, it is a good day.  I can walk around and get two or three things done and just rest in between and after.

I had one day recently when I got really ambitious.  I wanted to get sheets, blankets, and clothes washed and dried in the same day.  That morning my pain started at around a 5.5/10.  My energy was pretty decent, I had a plan of action in place and life was good.  You become a bit of a master planner with chronic pain and any chronic illness.  I have learned that I can have the best plan, and it will go straight down the toilet.  I started with the regular clothes.  Just the act of getting them moved from the washer to the dryer, using my laundry aid, escalated pain to an 8 and delayed me getting to my next load for an hour because my legs and back gave out and I was unable to tolerate the simplest actions required to put a load of laundry in.  Sadly, this was with pain medication on board.  My goal was three loads of laundry for the day.  To an able bodied person, that may seem like nothing, for me to complete that in one day would have made me feel like I had just climbed Mt. Kilimanjaro.  When you have a chronic illness that no longer is how life happens.

For me, time with friends is one of the most beautiful and precious things.  It also is the one thing you lose that people don’t understand about you.  When first diagnosed I thought that I could just power through, now I have learned the price I pay.  Last week I went to the movies with my sister and niece.  I wanted to see Mamma Mia 2, they did too quite frankly.  It was girls night.  I had to rest 2 days prior.  The night I went I almost collapsed going into the theatre, and I did collapse coming out.  I started the night fatigued and about a 5/10; before we left I had a slight moment where I wanted to sit down and sleep for a month but I was not missing.  By the time I got home I was about a 9/10.  I have been flaring, which in our world means additional pain, swollen and stiff joints, and fatigue since.   I would not trade that fun night though.  There is a price you pay for all of your time.  I know with this post, I am not asking for sympathy.  But before you make a judgement, pause and maybe try and step into another’s shoes for just a moment.

Even our families and closest friends don’t always understand. Chronic pain is hard for anyone to understand because it can’t be seen. When you look at us we don’t look any different from the next women. Unless you you see us limping, walking with a cane or rubbing a sore spot you wouldn’t know we were hurting. They try to understand, and at first they do really well. But even the closest of friends or family start to get frustrated after repeated cancellations. They think back to the time they sprained their ankle or tweaked their knee, and the pain was gone in a couple weeks and they don’t understand why “a little pain makes life so hard!”

What Amy and I shared above is simply a small glimpse into the life of someone who has chronic pain. Someone who has to carefully plan each and every task they do on a daily basis. No on will never be able to explain to what it feels like to feel like your body is no longer your own. Your head and heart want to do one thing but your body says NO. No one will ever be able to explain to you how hard it is when you have to turn down your best friend for the 9th time, simply because the pain is to unbearable. No one can ever explain what it feels like to be told by the people who you are closest to to “Just take some Tylenol, and a nap, and you will be fine!” No one will ever be able to tell you what it feels like EVERY SINGLE TIME you go to a doctors office and they see that you take pain medication, and you can see their thoughts about you change for the worse. No one will ever be able to tell you how it feels to have someone tell you to “Just exercise and lose some weight, and you will feel better!” All that being said, until you have lived and walked in our shoes please try to keep your judgments about us until you meet us, and really get to know us. Yes, my pain impacts almost all of my daily life, but it DOES NOT make me who I am.

With Love,

Amber & Amy

BOOK REVIEW: The Pain Companion

I just finished reading a FANTASTIC BOOK called “The Pain Companion,” By Sarah Anne Shockley. Sarah provides an honest view into dealing and living with pain in a way that many others don’t. She is open and honest about what living with chronic, daily pain is like, even sharing how bad her quality of life got for awhile. When many people would only share that “perfect” viewpoint that makes living with pain look easy. Which anyone who lives with any kind of chronic pain knows is simply not the case. Throughout my reading I made so many notes of agreement or simply wrote YES in the margins, rather than highlighting a whole paragraph! Because what she said was so true and so valid. By reading this book, it made me stop and look at the way I deal with, and live with my chronic pain. I was able to take away so much at the end of the book and plan to put some of the meditation techniques she talks about (in section 3) into practice in my own life.As stated by Dr. Bernie S. Siegel in the foreword of the book, “Sarah Anne Shockley learned about pain that he hard way, by experiencing it and by being incapacitated by it. But she met the pain, and she worked with the pain, and she is offering you the benefit of her experience in this helpful, gentle book.”

Sarah divided her book into 4 sections: Part 1: The Pain Moves In. Part 2: The Emotional Life of Chronic Pain. Part 3: Meditative Approaches to Physical Pain, and the last section Part 4: When Pain is The Teacher.

In part 1 which she calls “The Pain Moves In,” Sarah talks about how a person feels in those moments when they start living with chronic pain. She also openly discusses the source of her pain along with things she tried to combat it. That being said I think Sarah truly said it best when she stated “At first, I thought everything was about to get better, and I would simply rejoin my life where I’d left off. I had always healed before. Always!”
I think that is how all of us who battle or have battled chronic pain felt when it started. Oh, this will just be like anything else, it too shall pass. You just want to think that maybe a few days off, a massage or maybe even some physical therapy will be all you need to get rid of your pain. Sadly, for many of us that’s not the case. The pain we feel today will be the pain we deal with consistently for much of our future without some type of cure. When it sets in that this may not be a small injury like back when you were a teenager or were back in your twenties. That brings up a whole new set of emotions and feels that have to be dealt with when you have to face what may be in your future. Which Sarah talks about in the next section, part 2.

Part 2 is entitled, The Emotional Life of Chronic Pain, which to me couldn’t be more fitting. Because living with chronic pain isn’t just about the physical pain that we feel on a daily basis. There are so many other aspects that have to be dealt with. Other things that people who haven’t fought chronic pain wouldn’t ever begin to understand, or so we think. But sadly, these are the kinds of topics and feelings that most who suffer from any kind of chronic pain don’t feel comfortable talking about. Mainly because of the way they think they will be judged. In the second portion of the book Sarah takes time to address the difficult emotions that come along with living in chronic pain and then provides suggestions on things that can be done to help relieve those feelings. One thing she discussed in this section of the book that really made me think about my own life was on page 36, she discusses how we need to stop making others feel better because they can’t make us physically better. That really struck a chord with me because I am VERY guilty of doing that. And now that I am aware of the problem I can use some of the steps to try to fix that issue within myself. And truth be told, most of the issues that she talks about in this section I do, or have done at some point in the years I have been dealing with chronic pain. But really did not realize it until reading Sarah’s work. At the end of each chapter in this section she provides you with a summary or take away, which I found to be so VERY Helpful.

Moving on to Part 3, which is called, Meditative Approaches to Physical Pain. As I skimmed through the book before actually sitting down to read it, I assumed that this would be the part that I would have the hardest time with. Because I’ve never really understood meditation. But truthfully that wasn’t the case at all. Sarah doesn’t jump right into meditation, instead she goes through a series of activities first. Like discovering your pains purpose, or finding a new approach, which takes your through and makes you see why the body has pain as well as taking a lot at the approach we are currently using to deal with pain. After that then she goes through several meditation activities that are really very clear and easy to understand and simple to do. I tried several of them as I was reading and I feel like they are things that I will be implementing into my daily life as I deal with my own chronic pain. One for instance was to focus on your breathing when you are really hurting. Trying to make sure that you are not always holding your breath. Which is common, that’s the first thing most of us do when we start hurting. It’s like we think if we don’t breath we won’t hurt as bad. But now that I did that exercise and I’m aware of my breathing patterns I can carry that forward to help deal with my pain daily!

In the last section of the book, Part 4: When Pain is The Teacher, Sarah is vert straight to the point. One thing I had underlined was this, “Pain is present in your body for a reason. Instead of trying to get rid of something that is currently an unpleasant part of your experience, it works better to acknowledge the fact that pain is part of your reality at the moment, and then to work to transform and transmute the experience.” I couldn’t have said it better myself. But it has taken me many years to get to a point where I can agree with what she says. But I agree resisting the pain is going to get you nowhere, you have to come to a point of acceptance so you are able to deal with it and move on.

I can’t honestly say enough good things about this book and of course its author. I think what makes it so good and so easy to relate to is the fact that it was written by someone who has dealt with a lot of chronic pain in her own life. A person who has not ever lived through chronic pain will never be able to truly relate to someone who has. I will end on this, my favorite piece from the whole book Sarah says, “Having compassion for yourself means allowing yourself to feel the deep emotions that arise from living in pain and, once you have acknowledged and felt them fully, to let them go.” I will be highly recommending this to all the people I know who deal with chronic pain, as well as anyone who lives with people who have chronic pain.

*You can Find The Pain Companion on Amazon for purchase.

I want to take a moment to thank Sarah Shockley, Kim Corbin & The Chronic Illness Bloggers for allowing me to review this book. Thank you All!

With Love,

Amber

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