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

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.

Explaining Fibromyalgia in Six Quick Points

Fibromyalgia is a term that has been thrown around for years. For many years the medical profession used Fibromyalgia as a catch all. People who had generalized pain that couldn’t be diagnosed would be given the diagnosis of Fibromyalgia. The medical profession didn’t really seem to understand what caused it, and what could be done to treat it. In the past decade the condition has become much more understood and there are new diagnostic criteria that the patient must meet. I will discuss those shortly. Like many other conditions the more research that is done the more everyone understands it and it can be treated.

1. So what IS Fibromyalgia? The definition for this condition has evolved over the years. For now it is defined as a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.

2. How many people have Fibromyalgia? Most recent estimates say that there are 3 million cases per year!! According to The National Fibromyalgia Association, Fibromyalgia is one of the most common chronic pain disorders. It is estimated that 10 million people in the U.S. are affected, and an estimated 3-6% of the world population. This condition is normally seen in women, approximately 75-90% affected are women. But it also occurs in men and children of all ethnic backgrounds.

3. What causes Fibromyalgia? Currently researchers are not exactly sure of the cause of FM. That being said more research is being done all the time that is leading in the direction of determining the exact cause. Most agree though that FM is caused by issues with the nervous system. They feel that those with FM will experience amplification of pain due to the abnormal way the nervous system is processing the signal. The newest research is leading in the direction that there may be a genetic predisposition in those who have FM. I expect to see a lot of new information coming on this front in the coming years!

4. What symptoms would a person with Fibromyalgia present with? The main complaints a person with Fibromyalgia usually present with the following: pain, fatigue, and sleep disturbances.

Pain– The pain that comes along with this condition is usually chronic and widespread. It can be felt all throughout the body and may vary in intensity. The pain can be described as stabbing, shooting, aching, throbbing or even as numbness and tingling. Usually people will complain of morning stiffness and abdominal pain until they get stretched out.

Fatigue– The fatigue associated with Fibromyalgia is much, much more than just being tired at the end of the day. This fatigue is an all-encompassing exhaustion that interferes with daily life! It is causes an inability to complete basic tasks.

Trouble Sleeping– Often times many people who have FM also have some sort of a sleep disorder that prevents them from getting a deep, restful, restorative nights sleep! This making the fatigue that much worse!

Cognitive difficulties – Many who suffer from FM will complain of “fibro fog.” Which is also known as brain fog. This is a symptom of fibromyalgia where you feel as though you can not think straight. You may have trouble understanding things, remembering things, or even losing things. All of which can be “normal” with Fibromyalgia. This is a form of cognitive dysfunction that comes and goes with FM.

5. How is Fibromyalgia diagnosed? In 1990 the American College if Rheumatology (ACR) developed classification criteria for diagnosis. The criteria included a history of widespread pain in all four quadrants of the body for a minimum of 3 months prior to diagnosis. It also required that the patient have pain in at least 11 of the 18 designated tender spots. In 2010 the ACR developed new diagnostic criteria that did not rely on evaluation of tender points. Instead focused on the person’s pain being widespread and accompanied with other symptoms like problems sleeping, and fatigue. They also take into account the cognitive issues that the patient may be feeling/dealing with.

6. How is Fibromyalgia treated? In order to effectively treat FM the symptoms need to be treated. Thus treatment is really about symptom management via medications,or other treatment modalities. Medications or other treatments like massage to reduce pain, sleep management and finding ways to lower stress are the main treatment modalities. Exercise and eating healthy, as with most conditions are encouraged to help lower the pain level. A person with FM will also need to discuss the cognitive difficulties they may be having with their provider so a proper treatment plan and recommendations can be made.

This was a quick and dirty way to explain Fibromyalgia, how many people are impacted, the suspected causes of FM, as well as the diagnosis and treatment of the disease. Even with the changes in diagnostic criteria and more research being done, FM is still not fully understood. And treatments often end up being trial by error. One medication/treatment may be prescribed and if that works they will continue it. If not, they will continue down the line trying to figure out what works for each person. And the fact that many will also experience a number of other symptoms and overlapping conditions, like Irritable Bowel Syndrome, Lupus & Arthritis can complicate things. That being said over the last decade the understanding of the disease has increased and they are always working on new medications for treatment of FM. Based on the trends over the last few years it should be expected that there will be big advances in the understanding and treatment of FM. This post just shows more clearly that those who suffer from FM are NOT alone! It also shows that patients need to continue to advocate not only for their own care, and the care of others who can’t advocate for themselves. And more focus needs to pushed through the proper government channels to advocate for more money for research of this condition!

With Love,

Amber

How I Really Feel About…….. Pain

Pain….. is something I deal with daily. And I am guessing that many of you do as well! It has just become a part of our daily lives and something many of us don’t give a second thought to. And most of us would give anything to have one pain free day where nothing hurt at all without having to take a pill to get that way. That being said it has become a BATTLE for some to actually get the medicine that they need to treat said pain. Thanks to all those who are abusing pain medicine it makes those of us who actually battle chronic pain to also be viewed as an addict to some care providers. It is so sad that people who have chronic pain and live in pain everyday have to jump through such hoops just to get the medicine that we need to be able to function.

I usually try to stay away from the highly debated issues like this, but I read something that really struck a chord with me this weekend. A fellow Lupie posted that she got to the point where she could no longer handle her pain at home with all the alternative options, and ibuprofen she has at home. So she went to the ER, simply because she didn’t know what else to do. And of course because her primary complaint was pain, she was looked at by some of the care providers that she was simply drug seeking. And I know she is not alone in this I know this happens all the time. It has happened to me when I went in to the ER with a Hemiplegic migraine, there was no test to show that I was truly in pain so its easy to assume that I really just want pain medications. I even had one doctor tell me that I was just a hypochondriac and that there was no reason for me to be seeking treatment in HIS ER.

That’s the whole problem with autoimmune conditions and chronic pain syndrome, there is not always a blood test or imaging that will show that the patient is truly hurting. Most doctors don’t understand autoimmune conditions therefore they don’t understand why we are in pain. If they can’t see a lab result change or something on an MRI or CT Scan to explain the pain they just don’t get it.  And it frustrates me to no end that I can’t be honest about my pain with some of my doctors without them looking at me and thinking I just want the drugs. When in all reality I just want a day where I can wake up and function like a normal person. I don’t like how the pain medications make me feel but if that is what I have to do to function then so be it. I think many of you would agree with me when I say I just want a day without pain. I would give almost anything to have a day, a week, a whole seven days where I didn’t hurt somewhere and I could do all the things that I want to do without having to spend the next day(s) in bed.

The government at the local, state and federal levels are trying to do what they can to change how pain medications are prescribed and filled to decrease the level of abuse. In some states you are only allowed a seven day prescription no matter what the reason for needing pain medication is. In other places you have to give a urine sample every thirty days before you can get a new script to show that you are really taking the medicine and not selling it. Pharmacies are now being linked in many states throughout their local areas to try to prevent those abusing drugs from doctor hopping and having multiple scripts from multiple different doctors. While all of this is positive and will hopefully start to decrease the abuse of pain killers. It has actually made it harder for those of us who really need it to function. We are being made to jump through more hoops then ever before.

The real question I guess is how do we change the views of these care providers, especially ER providers. Where they see a large amount of drug seekers everyday. What can we do to prove to them that we aren’t wanting more and more medications, that we just want help getting through this flare up. Even with our conditions in our charts that say LUPUS, MIGRAINES, ENDOMETRIOSIS or whatever conditions you have that cause pain, they still often times wonder. I have thought about this a lot and have come to the conclusion that we will never change the way they look at us. We just have to have tough skin and prove to them that we don’t want an extra script or something new to take at home, we just needs something to break the cycle we are in. Maybe one day more doctors and care providers will start to understand the conditions that cause chronic pain. Until then we are stuck in this horrible rut and just have to prove our self to each new provider, and show them who we are and what we stand for.

With Love,

Amber

The Things I Wish Someone Would Have Told Me

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

With Love,

Amber

Let’s Talk………Leggings

It’s not big news to you if you know me or others who struggle with chronic pain or Fibromyalgia. Or that when we dress, most days it’s purely for comfort. The general rule is that the more tight and uncomfortable the clothes are, the more uncomfortable we will be throughout the day. So yes many times we choose to dress for comfort over fashion. And yes, sometimes that means we look a bit slob like or dare I say lazy. But I can guarantee if you asked anyone struggling with the pain of Fibro (or other chronic pain) and the struggles of clothing, that they don’t mind. Anything we can do everyday to make our lives a little easier or pain free we will pretty much do. That is within reason of course. Sorry aover the course of the last few months I’ve been on a search for the “PERFECT” legging! And today I want to share what I have found!

Searching for the perfect legging can be long and arduous at times. And just plain frustrating. Okay, arduous, may be a bit of an exaggeration. However, the experience can be frustrating!! One of the biggest frustrations for me along this journey was to find leggings that not only fit but didn’t make me look like a whale, and didn’t break my pocket book! Another frustration with leggings in general is the looks of judgement or even disgust that one might receive. Just because I am dressing in leggings in public does not mean I am lazy!!! It simply means I am having a crappy day filled with pain and I don’t need your judgement or to explain why I chose my attire!!!

There are a few guidelines I feel ANYONE shopping for/wearing leggings should follow. They are as follows.

  1. Wearing your TWEETY BIRD or SPONGE BOB pajama pants in public is NEVER okay!! For everyone’s sake please take a moment and throw on some real pants before leaving the house!!
  2. When wearing said leggings I ALWAYS encourage ladies to buy and wear shirts that are long enough to cover your behind. It’s a much better look overall.
  3. Lastly, NEVER EVER wear nude color leggings!!! This is not a good look on anyone!!!

So now that we have talked about the guidelines for wearing leggings, let’s discuss my TOP 5 brands. These are my personal favorite leggings from 5 different retailers, and at different price points, in no certain order.

g1. Faded Glory- Fleeced Lined, Full Length Leggings. $9.99 (2 pack)~~ These leggings are PERFECT for the winter and for anyone who gets cold easily as they are lined with fleece. PROS- very warm and cozy, great price point, does not shrink if accidentally put in the dryer. CONS- Can cause the person wearing to get too warm! The waist band is an awkward width, it is not the standard wide waist band that most leggings have so it can sit easily in a person’s folds.

2. Women’s Leggings Old Navy- Price Range-$10.00- $32.00. They have a variety of lengths and styles. PROS- very soft and comfortable, thin waist line (the pair I have is a thin waist band, they have varying waist band widths available). CONS- will shrink if dried in dryer, fabric begins peeling after only a couple wears. Can be found in store or on Online at Old Navy.

3. Maurices- Ultra Soft Legging. Ranging in size from 0-4XL, with various styles and color. The original black ultra soft leggings are $18.00, & $20.00 for plus sizes. Right now they have a site wide sale, fBuy One, Get one 60% off! So now is the time to buy!!! PROS- VERY soft, great quality fabric that doesn’t shirk in dryer or peel after multiple times wearing. CONS- For ME these are much to high waisted, to the point the waist band is up under my breasts. I read reviews and did not see many complaints of this. So I believe it’s just my shape. These leggings can be found in store and on their website.

4. Agnes and Dora- In order to shop this companies options, it’s best to find yourself a distributor. My distributor is Sarah Clawson, she keeps some stock on hand and has a Website (click the hyperlink to shop) on which you can shop. Sarah is super easy to work with and is always willing to go out of her way to find you what you are looking for. Leggings are ALL $22.00. PROS- These leggings are very very soft and warm. They come in multiple colors, patterns and sizes. Sizes range from XS-XXXL! Sarah routinely posts new inventory on her Facebook site so her customers can see all the new things coming in! CONS- I really love these leggings and the only con i can come up with is the width of the waistband. I prefer a WIDE waistband, and these are more of a skinny waistband. Sarah’s website is linked above but you should also check out her Facebook Group here!

5. Last but certainly not least, a brand I feel confident in saying you have probably heard of and may actually own some. LULAROE. This is another company where you need to find a distributor to purchase from. The LLR distributor I have become loyal to and buy all my LLR gear from is Rebecca Weddle. If you search Lularoe Rebecca Weddle on Facebook you can find her VIP group. In that group she offers frequent sales and discounts. Now to the leggings!! They come in sizes Tween(size 00 and 0), OS (one size, size 2-10), TC (Tall & Curvy, size 12-18) and TC2 (Tall and Curvy too, size 18+). PRICES are $23.00-$25.00, and they come in countless colors and patters! PROS- Fabric is super soft and stretchy, the fact that they come in countless colors and patterns as I mentioned above. And these are quality items and will last a LONG time. The patterns do not fade and they can be dried if necessary, but it is not recommended! I also love the WIDE waist band that feels like it is holding everything in where it should be! CONS- Can be pricey, but like I said they hold up really well! Also it is almost impossible to get a plain colored legging through LLR!

This is just a quick overview of my favorite leggings I have found. I know you may be thinking this is a silly post. But until you have a condition that causes pain everywhere which can be made worse by clothing you won’t truly understand! Leggings can really feel like a lifesaver when you have to get out of the house but the thought of having to wear “real” clothes makes you want to cry! I hope this guide helps you to chose some better options as far as brands and distributors. Please leave me a comment letting me know what you thought of this post. But please be nice!!

With Love,

Amber

Raising Awareness of Invisible Illness 

Invisble illness, invisible disability……. To those who don’t have one, most would assume that it’s in your head. Thus invisible. However, this so far from the truth An Invisible Ilness is an illness that cannot be seen outwardly.  So for instance; Migraines, Lupus, Rheumatoid Arthritis, Kidney Disease, thyroid disease, Heart disease, arthritis, fibromyalgia, Chronic Fatigue Syndrome, or Chronic Pain. This list goes on forever!!  Invisible illnesses could even include mental illnesses. You can’t and most of the time will never see mental illness outwardly. They are conditions that can not be seen by just looking at someone. They are conditions that may be wreaking havoc on a person internally but you would never know because they may or may not be showing any signs outwardly. The Invisble Disabilities Association has deemed October 15, 2017 – October 21,2017 to be Invisoble Disabilitoes Week Online. A week to celebrate if you will, or bring conditions like these to the forefront. So let’s do just that. 
When you see someone in their thirties get out of a car they just parked in a handicap spot. What’s your first thought? For most I would almost guarantee it’s not “Oh how sad, I wonder what condition has made them disabled!”  For most it is probably more along the lines of “Look at that fat lazy girl taking up a handicap spot. I bet that tag belongs to her grandma or somethings!”  Now, don’t get me wrong not everyone thinks that way. But I know a large amount of people do. I have even caught myself at times thinking things I shouldn’t. Sadly in this day in age it just seems like second nature.  People don’t automatically assume that their may be a reason that a 32 year old slightly overweight female has some big bad illness because on the outside other than maybe a limp or the look of exhaustion on her face you don’t see anything wrong.  

    According To Everyday Health,  “But for the millions of people who are living with arthritis, fibromyalgia, chronic fatigue syndrome, and other forms of pain that are “invisible illnesses,” explaining what’s wrong is another side effect of their condition. Not only do you have to put up with challenging, often painful, and sometimes debilitating conditions every day, but on top of that, you may have to face skepticism from people — friends, family, and co-workers, as well as strangers — who don’t understand what’s wrong with you.”

    So what do you do to get past the skepticism and the non-believers? Do you put up bumper stickers with a list or your conditions? Or wear a T-shirt that says something along the lines of “Yes, I’m really sick? No!  Because you can’t change the way people think.  All we can do is pass on awareness to our friends and family. And even the people who follow us on social media. The only way we will ever get past the way people who view those of us with invisible illness is awareness. 

    Awareness can come in many forms. For me Blog. I can get my information out to larger volumes of people by blogging. I also use My social media accounts as platforms to spread awareness. Do people get tired of it? I’m sure! But we have to spread awareness for the Invisiblem Illnessea that are touching our families and friends. Should we shove it down peoples throats? Absolutely not, people aren’t going to change!  Some people will always think we are just lazy. And you know what we have to be okay with that bc we can’t change anyone else. 

    So help me help us this week by spreading awareness of Invisible Illness. One way we can do so this week is to change the frame on our face book profile picture to one that says I live with an Invisible Illness for the week. That just might open some eyes for people around you!!  The Huff Post posted this graphic and it feels like the perfect way to end this blog. But should you have any questions or anything please reach out!  

    Go out and spread awareness of your Invisible Illness/Disability!

    https://www.everydayhealth.com/pain-management/invisible-illness-when-others-cant-see-your-pain.aspx

    https://m.huffpost.com/us/entry/8178886

    Tips to Help You Get Moving in Morning. 

    Those first movements of the morning. You know what I’m talking about. When you wake up and try to move for the first time of the day……. Painful? Stiff? Frustrating? Are these words you would use to describe the morning in your world? They are for me. There are mornings when I wake up and am almost in tears bc I literally can’t straightened or bend (depending on the joint) and extremity! What can we do to help this? What can we do to make our mornings a little less stressful and painful? 
     Tips for getting moving 

    1. Take a hot bath or shower. 

    2. Avoid nicotine, alcohol or caffeine before bed. These stimulate your brain and can make it hard to get a good restful nights sleep. 

    3. Try a morning self massage of the areas that are the most sore. 

    4. Try to avoid sleeping on your stomach as it causes unnecessary stress on your low back. 

    5. Try to avoid sleeping in cold damp areas as both these conditions can cause increased stiffness in the mornings. 

    6. Do light and easy stretches while laying in bed!

    7. Drink lots of water! It’s just good for you, period. But it will also help you be less stiff. 

    8. Make sure to dress for the season as the extremes can make it harder on your body. 

    9. Try to get regular exercise. Even 10min a day will help! 

    10. Plan ahead! This one can be very helpful. This can be something as simple as making sure you have plenty of time to get up and around in the morning. 

    11. Take your pain medication before getting out of bed. This one will take some planning, especially if you have to be somewhere. Because you will need to give the meds 30min to an hour minimum to kick in. 

    12. Use your clothes dryer to your advantage. Before you need to get dressed put your clothing in the dryer on high for just a few short minutes. This will help soothe those achy joints! 

    In the list of things that will improve your morning-time stiffness there are a couple catch 22s. The shower, yes it will loosen everything up and make you feel better. But it may also deplete you mr energy tank for the rest of the day. Also, regular exercise. We all know it will help. But it’s another that sometimes you just think “I hurt so bad, the last thing I want to do is exercise.” Or at least I know I do. However, exercise doesn’t have to be aerobics or heavy weight lighting. It could be riding a stationary bike or walking for 10 min. I know that my Rheumatolgist suggest some kind of exercise for at least 10 min a day. Doesn’t matter what it is, just get that badly moving!!  
    Personally, my biggest suggestion is to make sure you have plenty of time in the morning. That way if you are more sore than the average day or if you need to jump in the shower to soothe those joints you have time. There is nothing worse than waking up late and having to push through the stiffness simply because you don’t have time to adequately deal with it. 

    If you feel like your stiffness in the morning is getting worse or if you notice it primarily in one joint (like a knee), please make sure to contact your doctor and let them know. 

    I included this little diagram of a few exercises you can do first thing in the morning to get moving.   


    Hope some of these tips help!

    -Amber 
    Resources:
    http://www.everydayhealth.com/fibromyalgia-pictures/7-ways-to-cope-with-fibromyalgia-morning-pain.aspx
    http://www.fmcpaware.org/fundraising/176-movement-therapies/907-10-tips-to-overcome-morning-stiffness.html
    http://www.healthline.com/health-slideshow/rheumatoid-arthritis-morning-stiffness

    Medical Marijuana….The Real Story! 

    The big IT THING these days for treatment of just about anything is Medical Marijuana… How do you get it? Does it really work? How does it help with chronic illnesses? How do you take it, what forms does it come in? Lets take a look at a few diseases and how they are effected by Medical Marijuana! 

    Although cannabis is still illegal in the United States under the federal government, many individual states have legalized cannabis for VALID medical reasons. Each state has its own list of qualifying condition, and some states allow doctors to approve a medical condition that is not ok the legalized list. There are too many states and conditions for me to write them all out for you. So if you are interested in the approved conditions in each state check out the link below. https://www.leafly.com/news/health/qualifying-conditions-for-medical-marijuana-by-state

    Lupus is often manifested with joint pain and fatigue. Although it can effect many parts of the body and in many different ways. Medical Marijuana is often used to treat pain and inflammation mostly in Lupus patients. Patients are quoted saying they prefer using Cannabis rather than pain pills or muscle relaxers because there are fewer side effects for most when using Cannabis. It is said that the most effective ways to treat lupus with cannabis is to do so with high levels of CBD capsules taken orally daily. Although the capsules can be the most difficult to find. Juicing the leaves also seems to be an effective treatment according to research. And vaporizing CBD can be a good way to help lupus sufferers sleep. One can also eat the edible CBDs to help treat lupus. Although like anything finding the proper dosage can be frustrating, as it can be a series of trial and error. 

    Fibromyalgia is said to effect nearly 5 million Americans. It is a poorly understood condition that can cause deep tissue pain, fatigue, depression headaches and even insomnia. Research from 2014 said that most find medical marijuana to be far more effective than any of the prescriptions on the market designed to treat fibromyalgia. From this study it was found that 62% of the people who tried medical marijuana as treatment found it to be very effective. While only 5% said it did not provide them with any relief. Most people will take the capsules for fibromyalgia or in similar forms to the treatment of Lupus. Most commonly for fibromyalgia it seems that the capsules, the edibles or oils/creams are the forms most used. 

    Interstitial Cystitis (IC) is a pain bladder condition that effects more than 4 million people in the United States alone. Through research it seems that cannabis extracts may offer new hope for people with this very painful condition. IC causes symptoms like a urinary tract infections, abdominal discomfort and bladder spasms. In Illinois where cannabis is legal for medical treatment and IC is an approved diagnosis to receive cannabis. The IC Network found that about 63% of those diagnoses and use some sort of cannabis to treat their symptoms, and reported that the cannabis decreased their symptoms by 50%. Eighteen percent of those surveyed reported that cannabis completely relieved their symptoms. Fourteen percent said that it helped their symptoms by at least 25 percent. Although marijuana is still generally smoked to provide relief from pain, other forms are being developed that eliminate the effects of the “high,” yet preserve the medicinal effects. Since cannabis has had such a high rate of symptom control in IC, the pain relieving and anti-spasmodic effects of cannabis are now being looked into for treatment of other conditions. Vaporizing CBD or using CBD oils can be used along with capsules for treatment. 

    FORIA a company based out of Colorado is saying that their cannabis based product can help relieve menstrual cramps. This compound has not been studied as to how it would effect endometriosis. But one could assume that if it can help with menstrual cramps that the mechanism of action would be the same or similar for someone with Endo. FORIA was formulated to to maximize the muscle relaxing and pain relief properties of cannaboids. Without the psychotropic or feeling of being high like actual cannabis. The capsule is a blend of THC which is known to relax muscles and cramping in the body. One could also use CBD oils and creams for treatment if Endo. 
    Cannabis can be used to treat just about anything without the side effects of major pharmaceuticals. Cannabis has very few side effects and most could be viewed as positive effects. Like mood improvement, increased appetite, and better sleep. The major problem with getting medical marijuana is that in most states it is not legal. And in the states that it is legal your condition may not be on the approved list in order to get approved for medical marijuana. 

    If you feel that you or Someone you know could benefit from the use of medical marijuana in a state where it is not legal. Please contact your legislator and check for any movements in your state for the legalization of medical marijuana. 

    Note: To see the forms and ways to consume medical marijuana check out this website. https://unitedpatientsgroup.com/resources/methods-of-consumption

    While this method of pain/symptom control may not be for everyone. Research clearly shows that it is helping people. It is not a common method of treatment yet, but based on the increased use of CBD I think it will become more and more common. 
    -Amber

    Resources:

    https://www.leafly.com/news/health/treating-lupus-with-cannabis

    Marijuana Rated Most Effective for Treating Fibromyalgia

    Treating Interstitial Cystitis with Cannabis

    Can Marijuana Relieve Menstrual (and Possibly Endometriosis) Pain?


    http://www.impactcannabis.org/endometriosis/

    https://www.whaxy.com/learn/does-cannabis-treat-lupus

    Alternative Therapy to Treat Fibromyalgia 

    Fibromyalgia……..Is defined as a widespread musculoskeletal pain disorder accompanied by fatigue, sleep disturbances and memory issues. At this time there is no cure and no definite treatment. The standard treatments right now are pain killers, antidepressants and anti-seizure medications. These help reduce the symptoms but don’t really treat the condition as a whole. So many people will turn to alternative therapies to help control the symptoms of their fibromyalgia! Let’s take a look at some of the most popular alternative therapies.
    One of the most popular natural therapies is YOGA. There are several studies that show that yoga may help ease the symptoms of fibromyalgia Researchers for pain have linked yoga to lower levels of fibromyalgia-related pain among those who participate in yoga. Another study published by the Journal Of Pain showed that people who participated in a 75 minute yoga class twice a week for eight weeks reported less pain and had a lower stress hormone cortisol level.
    Another popular alternative or natural therapy is meditation. Dr. Daniel Lewis says that meditation may change the way your brain functions and helping to improve symptoms of fibromyalgia. A study published in Current Pain and Headache Reports stated that meditation can relieve fibromyalgia-related pain. Meditation may help calm the mind and ease the body, promoting deep rest and relaxation. End result it may help your body heal itself.

    5 HTP has also found to be a popular treatment. It is a natural Amino acid that helps your body produce serotonin, which is the chemical that helps control mood. An article published by the Rheumatolgy International suggested that 5HTP may help Improve fibromyalgia symptoms. It can help to relieve pain, ease morning stiffness, fatigue, and possibly anxiety!
    Even though it sounds scary, there has been a lot of research that shows acupuncture can help relieve fibromyalgia symptoms. Especially pain symptoms. With acupuncture one or more dry needles is inserted into the skin and underlying tissues at a specific point. Then the needle is gently twisted or manipulated causing a measurable release of endorphins into the bloodstream. (Endorphins are the body’s natural painkillers.) One acupuncture treatment for some may last weeks to help alleviate chronic pain. A recent study showed patients who had acupuncture had a decrease pain and increased quality of life.
    Chiropractic care is a very common complementary or alternative care for fibromyalgia. It is used to treat pain in pressure point areas, back pain, neck pain, shoulder pain etc. Chiropractic care may be effective care for fibromyalgia because it may reduce pain levels and increase cervical and lumbar ranges of motion. Chiropractic care is based on the principle that the body is a self healing organism. To reduce pain and increase healing the chiropractor will adjust the back. The goal being to restore normal transmission nervous impulses by  increasing the mobility between vertebrae, which may have become restricted, or slightly out of proper position.
    There are several herbal agents that are used to treat in the treatment of fibromyalgia. Here are just a few:
    SAMe (S-Adenosyl-L-Methionine)-This amino acid derivative may boost levels of serotonin and dopamine, another brain chemical. Limited research suggests SAMe may improve mood and sleep.

    MAGNESIUM -Low levels of this element may be linked to improving fibromyalgia symptoms. However, research has not turned up solid evidence that taking magnesium supplements improves symptoms.

    MELATONIN-This natural hormone is often used in supplements to help improve someone’s sleep patterns. It may also ease fibromyalgia pain.

    ST JOHNS WORT- Though this herb is sometimes used to treat certain fibromyalgia symptoms, there’s no solid evidence that it works. A few studies suggest it may help with mild depression. But it can also limit the effectiveness of some medications.

    There are many options for alternative therapies for the treatment of fibromyalgia, I’ve only covered a few here. Remember that you always need to check with your healthcare provider before starting any alternative therapy. I hope that something here will help you and give you some relief.

    -Amber

    Resources:

    http://www.m.webmd.com/a-to-z-guides/features/alternative-treatments-for-fibromyalgia

    http://www.m.webmd.com/a-to-z-guides/natural-therapies-and-alternative-treatments-for-fibromyalgia
    http://www.healthline.com/health-slideshow/fibromyalgia-natural-remedies#8