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

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

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

The Honest Truth About Our Periods

Lets just really honest today! Periods…… they are not the favorite time of ANY ladies month. But even less so for those who have endometriosis. Men will never be able to truly understand what its like to deal with a periods every 28 days or how often you might be “lucky” enough to get to deal with these awesome body function.

We don’t have to talk about the obvious, the bleeding. But its a major part of why we all love them, oh so much. Then we are lucky enough to also get to deal with irrational mood swings, cramps that are not easily explained to men or others who don’t have to deal with those, and the bloating. Then there is the insatiable hunger. And of course we couldn’t want veggies, and fruits and lots of protiens. NO most women want anything sweet, salty or fried!!!!! Which does NOTHING for the ache that comes along with eating crap food.  Okay, you may be thinking that I am going overboard. But no…… I think most women would agree that, that one week of the month we would rather not deal with is far from pleasant and is oftentimes just awful.

NO, I am not here to write an ENTIRE blog post on how bad a menstrual period is. Because chances are those of you, that read past that first paragraph are women. Or men in committed relationships with a women so they know the ins and outs as well. What I really want to talk about is what we can do to make that week of every month a little easier.  So I went to my friend Mr. Google to help me with information for this post. Below you will find my (and others) recommendations for how to make that wonderful week a little easier for everyone involved.

1. Exercise With Lighter Activities –

If you are anything like me when you read this the first thing you said was “ARE YOU CRAZY, HOW WILL EXERCISE HELP?” But that may be my common response to several things LOL. In all seriousness a lady can increase blood flow which will help cut down on the cramps. So if you decide to do this you need to go light. Do easy exercises like yoga, or stretching or walking, some encourage swimming but that sounds like a disaster to me!!!!

2. Hug A Heating Pad

This is and always has been my go to. For any abdominal or back pain I have during my period. I find a good heating pad and don’t let it out of my site for the whole week. The heat can actually sooth your muscles which in turn eases your cramping and overall discomfort

3. Its Important to Drink Plenty of Water and Stay Hydrated

I know some of you are thinking “No way, I am already holding on to three pounds of water weight, why would I choose to drink more water?”  I know, it sounds crazy but the more water you intake, the easier it will be to eliminate the extra water building up in your body. We should always try to drink more water, because it really is good for out bodies even when we think it sounds crazy. No matter if we are on our cycle or not we should all really try to drink 10-8ounce glasses of water a day.

4. Avoid Caffeine

Caffeine has truly become an issue for many people around the world. But for women its important to remember that caffeine actually makes you hold on to water weight, and definetley contributes to that achjy, crampy, bloated feeling we often feel during out period.

5. Eat The Good-For-You Food

Even though the only things you want are chocolate, ice cream and french fries (okay, maybe that is just me), we should all really try to eat more fresh fruit and green veggies. By eating enough of the good stuff it could potentially help to steer you away from the bad choices. You could try snacking on carrots with hummus, apples with peanut butter (which will give you the sweet and the crunch you make be looking for,) or blend up a smoothing with good fruits.

6. Try To Stay On Top Of Your Sleep

We all need 7-8 hours of good sleep all the time. That is especially important for teens who are on their periods, They really need eight to nine hours of sleep per night. Getting enough sleep will help you wake up feeling refreshed and rejuvenated.

7. Take Notes

Being prepared is your best defense when it comes to that time of the month.You should start keeping a record of your period each month. You can do this on paper or now with just about everyone having smart phones there are great apps that you can get that help you keep track of not only the dates of your cycle but also the symptoms, and how heavy they flow is. After a few months of doing this you will be able to see a pattern and can talk to your doctor if needed.

8. Use Period Protection That Lets You Stay Active

These days there are pads and tampons for every shape and size. Even special items made who are more active. And completely natural options. But what it comes down to is efficiency and comfort. It doesn’t matter what the women in your family has used for 3 generations, or even what your best friend uses. Don’t be afraid to jump out of the comfort box and do some research on products that are out there. You honestly just need something that makes you feel less self conscious and takes care of what it is supposed to.  And be prepared to be able to change said pad or tampon every 4-8 hours. This is especially important for the younger girls in our life who may not have been told the risks of Toxic Shock Syndrome.

Since we are really being open and honest lets talk about a couple of other things. One being at what point should you contact your doctor about your cycle.

The symptoms that you need to be talking to your doctor about quickly:

  • heavy bleeding
  • extended bleeding (more than 7 days)
  • bleeding after sex
  • spotting
  • excessive clotting during periods
  • abdominal pain
  • any odorous discharge
  • excess hair growth on face
  • unexplained weight gain

Likely Causes of an Irregular Period

Many issues can cause irregular periods, things like changes in the bodies production of estrogen and progesterone can alter the normal pattern of a ladies cycle.  This is why young girls going into puberty and women approaching menopause often experience irregular periods.

Other common causes of irregular periods include:

  • Having an IUD
  • Changing birth control pills or using certain medications
  • Too much exercise
  • Polycystic Ovarian Syndrome (PCOS)
  • Being Pregnant or Breastfeeding
  • Stress
  • Overactive Thyroid (Hyperthyroid) or underactive thyroid (hypothyroid)
  • Thickening of or polyps on the uterine lining
  • Uterine Fibroids
  • Endometriosis

The hormone estrogen thickens the uterine lining before ovulation, so when estrogen levels become unbalanced the uterine lining sheds irregularly. This may result in heavy bleeding.

The conditions Endometriosis can also cause extreme cramps, very heavy bleeding, pain with intercourse and pain in the rectal area.

If you have any of the above issues or just want to talk to your doctor make an appt to do so. Most of the issues that cause irregular periods can be treated in one way or another.

With Love,

Amber

Confessions of the Chronically Ill

Co-Written by myself & contributor Amy Nora

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

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

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

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

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

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

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

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

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

With Love,

Amber & Amy

The Truth Behind the Gluten Free Diet Part 2

Continuing on from Part 1 we will now take a look at what researchers have found more recently in regards to The gluten diet. We will also be looking at the potential benefits and potential risks of eating a diet low in gluten. I will also give you some examples of good gluten-free foods and the kinds of foods you should avoid.

In the early 2000’s Dr. Fasano continued the study of celiac disease, and the gluten-free diet. He also completed a large study that found the prevalence of celiac disease in the US to be about 1%. Which was actually 10 times higher that what researchers in the US before this study! Fasano’s research was published in the Journal JAMA International Medicine 2003.

After the spotlight was placed on Celiacs Disease in the US, many more studies were done and published, regarding the gluten sensitivity in Americans. Some research began to suggest that a gluten free diet might actually be beneficial to people with other health conditions, not just Celiacs. There have also been research done that showed that there could potentially be a link between gluten and schizophrenia, or gluten and autism.

“There is a possibility that some groups of individuals with other chronic inflammatory conditions, including autoimmune diseases like diabetes or multiple sclerosis, of course autism … and schizophrenia … there could be a subgroup of these individuals that could benefit from embracing a gluten-free diet,” Fasano said.

As research on this issue has continued, links between gluten-free diets and improvements of various other symptoms and disorders, has been found.

Around 2010 celebrities started to speak out about gluten-free diets. A popular singer and actress put out information on social media that she had lost a significant amount of weight by removing gluten and lactose from her diet, she did also say that she has allergies to gluten and lactose. But not everyone heard it chose to listen that she cut it out due to allergies and only saw that when she did this she lost weight. Around this same time, multiple food manufacturing companies began working to expand products that were gluten-free to keep interest in the products among the groups that were eating gluten-free diets. At this time rules for defining gluten-free products changed and would now require that food labeled as gluten-free must have an undetectable level of gluten. The early 2010’s is when the shift in gluten-free diets started. At this point removing gluten was not longer a medical treatment Celiac’s Disease, but a diet method.

Although in the past, gluten sensitivities were very obscure, it is now estimated that gluten-related disorders could affect 10% of Americans. While gluten sensitivity is being seen more often all over the world. It has been found that more consumers who don’t have any Celiacs Disease, or non-celiac gluten sensitivity, decided to change to a gluten-free diets by choice. According to a study that was published in The Journal of Internal Medicine in November 2016, in 2009 and 2010, 0.52% of Americans without celiac disease eliminated gluten from their diets, and by 2014 that percentage rose to about 1.69%.

The increase in people on a gluten-free diet could be due to the benefits that can be found from eating that way. Dr. Axe wrote an article talking about Gluten. He states that a diet low in gluten could potentially increase fat burning, provide a burst of extra energy, reduces inflammation, and easing of digestive symptoms like gas, bloating it diarrhea.

In the article by Dr. Axe he lists 6 ways a person can benefit from a gluten free diet. They are:

  1. May ease digestive symptoms
  2. Could provide extra energy and resulting in less brain fog
  3. Could be beneficial for children with autism
  4. Can decrease inflammation
  5. Promotes fat loss
  6. Improve symptoms of Irritable Bowel Syndrome

Some research in the last few years has found that gluten & gluten containing foods can potentially be a trigger for joint pain. It has been proven that certain foods are pro-inflammatory, meaning they increase inflammation. Pro-inflammatory foods could include gluten-containing grains, and any of the thousands of foods that are made from those grains. Many people with celiac or gluten sensitivity have found that when they remove gluten and gluten containing products they have less arthritis pain. However, most providers don’t feel like there has been enough research done on humans to determine if gluten can really help reduce inflammation.

That being said, medical experts caution that no one should begin a gluten-free diet for arthritis before having testing for celiac disease. Due to the fact that it might not be gluten causing the problems it could be a wheat protein allergy or lactose allergy or an issue with FODMAPs(which is small sugar molecules in some fruits and veggies.) They can all be pro-inflammatory and irritate the gut as well.

Since gluten-free diets have become one of the current “fad diets,” experts have began to warn people that gluten-free eating might not offer benefits. If you don’t have gluten sensitivity changing to a gluten-free diet could actually do more harm than good in the long run.

“We definitely don’t recommend a gluten-free diet for weight loss. My dietician will tell you that. The reason why is, when they remove gluten from a lot of these foods to make them taste more appealing, they add more calories or carbohydrates,” said Dr. Runa Watkins, assistant professor at the University of Maryland School of Medicine, who specializes in celiac disease.

“The second thing is, being on a gluten-free diet also puts you at risk for other nutritional deficiencies in the long run, such as like B-12 and zinc and folate,” she added, “And cost-wise, it can be expensive. So we definitely don’t recommend it just because.”

What you don’t hear much about is other foods, chemicals and medications that cause inflammatory issues, which is great for those without a diagnosis. People who have celiac symptoms or inflammatory issues who test negative for celiac disease are left without a diagnosis. But we are starting to learn about other foods and meds that could potentially produce the symptoms they are having. Recently there have been studies that have shown that the following foods and additives can trigger symptoms identical to celiac, gluten sensitivity and increased inflammation

The following list contains foods and additives that can potentially cause the aforementioned symptoms.

  1. Sugar
  2. Vegetable Oil
  3. Fried Foods
  4. Refined flour
  5. Dairy
  6. Artificial Sweeteners
  7. Artificial additives
  8. Saturated Fats
  9. Grain Fed Meats
  10. Processed Meats
  11. Gluten in store bought bread
  12. A second round of alcohol
  13. Trans fats
  14. Fast food

There is new research that has been done and published in the Journal of Proteome Research that has identified 5 new groups of non-gluten proteins that are responsible for inflammatory issues in patients with celiac. These proteins are very different to the gluten proteins that are known to cause celiac disease. This research gives those who test negative for gluten antibodies but respond well to a gluten-free diet hope. Hope that one day we will really understand what foods cause inflammation issues, GI symptoms, and what foods don’t.

In order for you to totally remove gluten from your diet, reading food labels is essential. Sadly, most of the time you won’t find “gluten” listed in a food label. So instead you should avoid foods that contain the following

  • Wheat
  • Rye
  • Barley
  • Malt
  • Brewer’s Yeast
  • Oats (unless you see on the label that they are gluten free)

So now you may be thinking, “What’s left?” So below you will find a list of good gluten-free foods, that are very nutrient dense.

  • Quinoa
  • Buckwheat
  • Brown Rice
  • Corn Grits
  • Gluten-Free Oats
  • Nut Flowers
  • Veggies and Fruits
  • Meat, Poultry and Fish
  • Nuts and seeds
  • Beans and Legumes
  • Dairy Products

Fad diets will come and go, just look at how Jenny Craig, South Beach Diet, or Weight Watchers are in and out of popularity. Everyone is always going to be looking for the easy out and the quick way to lose weight. The gluten-free diet is not one you should look into for weight loss though. Gluten-free diets really should be reserved for those who truly have a gluten sensitivity or have tested positive for celiac disease.

It is essential that you talk with your doctor before you make ANY DIETARY CHANGE. If you want to eat a low gluten or gluten-free diet, your Doctor needs to check to make sure you don’t have a gluten sensitivity. Simply because changing to a gluten-free diet can actually be detrimental to your health if you don’t have a reason to be eating that way. If your doctor okays the diet change, and you have a good experience with the change, stay the course. But remember when shopping to read the labels. In many cases when gluten is taken out of products, a lot of preservatives are put in its place. Many times there will be more calories and carbs in “gluten-free” food. If you are changing your diet and removing gluten and gluten containing products to see if inflammation levels will drop, please check with your dr before making dietary change. What may work for one person may not work for another. That being said, I expect that in the coming years more research will come out about how gluten impacts inflammation. I also expect more guidelines to come out from the FDA regarding the nutritional content of gluten free foods.

I hope that you were able to learn something from the information provided. And that you might be able to make a more educated decision on what you want to do regarding gluten in your diet!

** If you like this type of research based post please let me know in the comments. I want to produce the kinds of things you guys like to read!!

With Love,

Amber

The Ugly Truth About Chronic Illness

The ugly truth…… the lives of people who are chronically ill are often not what you may think. Most suffer a lot more than they are willing to share. We fight something everyday, whether it’s pain or fatigue or just feeling bad overall. And naturally we don’t want to seem like we are always negative. We don’t want to appear like there is nothing good in our life, so often times we hide all the bad and just talk about the good.  But after awhile this gets old and too hard to keep up the lies. So we just stop talking to people and start shutting people out because if we don’t see them or talk to them you don’t have to lie about what is really going on. For a good majority of people with chronic illness even on the days when we “look and sound good,” we are still fighting some part of our disease process. There are very few days where we feel “normal.”

I recently read a statistic that said that 80% of people with chronic pain/illness will hide their pain and symptoms from friends and love ones. At first I thought this was a crazy statistic but the more I thought about it I really believe that’s true. We don’t want looks of pity or for people to feel sorry for us and by keeping things to ourselves this is less likely to happen. If we don’t share we don’t have to worry about what others will think or say about us.

It is really easy to pass judgement on someone you don’t know who looks fine. You see a overweight young women getting out of a her car that is parked in a handicapped spot, and think there’s nothing wrong with her she’s just fat! Almost all of us have all done this at some point, myself included. But we should all really think twice about spewing judgement! By just assuming something about someone you don’t know at all or someone that you are close to you make them feel badly about themselves, and make them not want to go out to do things. Just because they look fine doesn’t mean they are not fighting something on the inside. I know for me it’s easier to just not say anything about the amount of pain I live with. Simply because people will want to pass judgement on my pain, my lifestyle or how I treat my pain. But honestly it’s no one else’s business.

If you see a young person limping or parking in a handicap spot don’t always assume they are jut lazy or overweight. They could have any number of health problems that you could never see. Heart disease, lung issues like asthma or COPD, cancer, Lupus, RA etc. Same goes for anyone really, not just those that are young. I read somewhere that 80% of older people have one chronic illness, while 50% have at least two! I know how easy it is to place judgement, but until you have walked in their shoes you will never know what’s really going on in their life.

The ugly truth is that most people with chronic illness have very few really good days. Often times the bad days outweigh the good. That being said you may not know this because they don’t tell you. But it’s just the truth. Most people with chronic pain won’t ever tell anyone just how bad their pain is and how much it impacts them daily because they don’t want the judgement. In these days people hear chronic pain and automatically think druggie. What you don’t know is that many of us would rather do anything than take pain meds. If we could work a full time job and be a truly functioning member of society we would! For me personally I would give basically anything to be able to go back to working as a Nurse. I miss it ALL the time and often reminisce about the days when I was able to work. I never wanted to end up like I have. But it happens. Anyone can experience a life changing illness or accident. It’s not just a certain kind of person who these things happen to. So be mindful of that. Be mindful before you pass judgement and before you say hateful things to someone. You probably know next to NOTHING about what their life on a daily basis is like.

The Strange Foe and Friend by Amy Nora

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

Dear Lupus…..

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

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

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

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

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

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

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

I live by the verses.

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

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

With Love

-Amber

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

How Many Times Have you Heard, “Just Lose Some Weight”?

If I had a nickel for every time I’ve heard over the course of my life that losing weight would help, I would be a rich rich women by this point in life. Yes, I know that getting to and staying at a healthy weight is important! So is eating the right foods and exercise. But in the long run will losing weight really fix or cure your health issues? Yes, I’m sure it probably will help some. But it’s not going to fix everything!! People like to throw that comment out for every issue. Oh you have headaches, lose some weight! Oh you have IBS, lose some weight! Oh you aren’t having any luck dating, lose some weight. Oh you’re having problems getting pregnant, lose some weight. I assume in the majority of cases people truly do not mean to be a Debby downer by telling others this. But they also probably have no idea how it feels to hear that from people you loved and respect, and expect some sensitivity from. If you’ve never struggled with your weight you have no idea how it feels for a friend or family member to direct those three words at you. “LOSE SOME WEIGHT!”

As a person who has struggled with my weight since High School I understand what a touchy topic this can be. I look back at my teen years and would give anything to be back at that weight now. But sadly that Amber was about 40lbs ago. But I didn’t just get fat due to poor choices and lack of proper food, just like many other chronically ill. Most of us probably took the DEVIL drug, aka Prednisone. Yes, prednisone fixes many many things. But it is also known to cause weight gain due to the cravings many deal with while taking the medication! And not like 3lbs weight gain. We are talking like 25, 50, 75 lbs. And it came on FAST. Your symptoms are mostly gone but now you got all the bonus weight. Sigh. The weight no one wants.

But it’s not just Prednisone that causes weight gain. Hormones often used for birth control can also cause weight gain, as well as Lyrica which is used to treat fibromyalgia! There are many many more that can cause weight gain. The point I’m trying to make here is that every over weight person you see did not just sit on the couch eating chips and watching Netflix all day! Even though that is what people automatically assumes, it is not always the case.

Did anyone think that maybe those of us who gained weight while on Prednisone might deal with a LOT of daily pain or extreme exhaustion!?!? Have you ever lived with so much widespread pain that literally every joint, bone and muscles hurt so bad that it’s torture even getting out of bed. Much less taking a walk or going to the gym. Does anyone consider the fact that many of us who are over weight can’t stand the way we look and can’t look at ourselves in the mirror. Many of us who have gained weight due to medical conditions or medications never asked for this. We didn’t just give up on ourselves and sit and eat chocolate all day. We got sick!!! And because of that many have taken medications that can cause rapid weight gain that doesn’t come off easily.

There are also those in the chronically ill community that gained weight because of the pain. They may have not felt like being the most active person. Every step, every tiny movement make your whole bodg ache. Then when someone throws out the “just lose some weight,” comment and you just wish they could live in your shoes for 24 hours so they know what’s it’s like. It’s honestly really hard to do anything at times, even low impact exercise can hurt! So what I am saying is when you already hurt in places you didn’t know could hurt the last thing you want to do is “hit the gym!”

If you really think you are giving offering up some groundbreaking piece of advice to work out and eat healthy. YOU ARE NOT! We’ve heard it from family and friends and even the doctors. I will admit the best I’ve ever felt was when I wasn’t walking in the morning before it got hot and ate a diet low on gluten. (gluten has been found to mess with inflammation in everyone.) It just wreaks havoc with the chronically ill. But let’s be honest eating healthy can be really expensive! And no that’s not a cop-out, but if you have ever tried to eat a gluten free diet, it’s hard at first and it’s expensive. And let’s be honest until you are ready to make a big change it isn’t going to happen. We are the only ones who can decide that we need to change the way we eat &/or our activity level. No one else can do it for us.

I guess the takeaway from my rant and rambling is that I wish people would work on their delivery. If you are kind and truly concerned about my wellbeing, I’m going to be more apt to listen to you. More than I will listen to the person who just tells me I’m fat and I need to lose weight. It’s not a surprise I know what I look like. I understand that research shows “When patients lose 5-29 percent of their body weight, the symptoms of chronic Conditions will improve!”Per the Cleveland Clinic. I know this but sometimes just getting your body moving and making that first move is the hardest part.