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

The Question That Should Never Be Asked

Why is it when you turn 30, the only thing people can think about is when you should be getting married and having babies??? Why is 30 the magic number?!? And why do people seem to place that “burden” mainly on women?!?! Why is it that when men turn 30 they aren’t constantly asked when they will have kids?!? Once a women turns thirty its almost as though that internal clock starts ticking and all those around you can hear it. Why do people feel that it’s okay to pressure women and married couples about when they are going to have babies?!?! Some may not want to have kids, others may be waiting to be more stable in life. And some, sadly can’t have babies. But no one seems to think of the latter. They all just assume that like everyone else in the world you will conceive a baby with no problems.

I would bet that every single one of you reading this knows someone who has had trouble getting pregnant, had trouble carrying a pregnancy, or even someone who can’t get pregnant. According to the CDC 6% of women ages 15-44 in the US are unable to get pregnant after one year of trying. And 12% of women (or 1 in 8 couples) in the same age group, will have trouble getting pregnant or carrying a pregnancy to term! You may not think that this it is that big of an issue, but if you do the math, infertility impacts around 7.4 million women!

Why do I feel the need to put all the statistics in there? That’s simple! People need to realize that infertility really is a problem. Having a baby for many people is not as easy as simply being intimate with their partner a few times. For many it looks more like taking ovulation tests so intimacy can be planned during ovulation. Or taking daily injections of hormones so your body will produce eggs that can then be retrieved, frozen, and implanted after fertilization!

People need to understand that it’s never okay to ask someone when they are going to have babies. Nor should anyone ever ask a women that they don’t know “when they are you due!?” Fertility is really a personal topic and isn’t one for the family dinner table or over wine with friends. I know from experience that it is hard to watch all the people you know getting married and having kids. It’s hard to be the lone wolf knowing that you will never be able to have your own biological baby! It never gets easier to explain to people that you can’t have kids. They always want to argue and ask if you have tried x, y and z.

As far back as I can remember I have wanted nothing more than to be a mother. Sadly, the last few years have changed all that and I won’t be able to have kids of my own. In 2011 I was diagnosed with Endometriosis and have had three surgeries since, and in 2012 I was hit with the Lupus diagnosis. I know many women with Endometriosis go on to have children. But for me the combination of the two make it much to high risk. It wouldn’t be safe for me or the baby. It took a long time to come to terms with that. And for a long time I would cry when anyone brought it up. Now 6 years down the road I can talk about it without tears (most of the time). I now know that I wasn’t meant to have my own kids but that I was meant to adopt.

I guess what I want people to really understand is that it’s not okay to ask a women about when she will have babies, or when she is due. You don’t know what goes on behind closed doors. No women should ever have to feel bad saying that she won’t have children! Or that she can’t have children. And they definitely don’t deserved to be bothered by everyone all the time about when it’s going to happen. Every women’s journey is going to be different. Some women will have no problem getting pregnant, some will chose not to have kids, and other will not be able to. So just think twice before you ask someone about having children.

With Love,

Amber

How I Have Dealt With Not Being Able to Have Kids!

March is National Endometriosis Awareness month.

What is Endometriosis??

Endometriosis is a painful condition where the tissue that is normally lining the inside of the uterus (the endometrium) is found growing outside of the uterus. The ovaries Fallopian tubes, and tissues lining your pelvis are commonly involved.

Who and How Many Are Affected?

Research shows that Endometriosis impacts 1 in 10 women who are of reproductive age. It is estimated that endometriosis will cause infertility in 30-40% of those who have the condition. It is believed that 7.5 million American women are affected by this condition. And 176 million women worldwide. Not only do those with Endometriosis have problems with fertility, they also deal with life altering pain that can have an impact on all areas of their lives. Not just their intimate relationship with their partner.

What are the signs and symptoms of Endometriosis?!?!

-Painful Periods- Pelvic pain and cramping along with the possibility of low back and abdominal pain. The pain may begin before your period and extend several days into the period.
-Pain with intercourses
-Pain with bowel movements and urination – most likely experienced during your period
-Excessive bleeding during period
-Infertility
-Other symptoms someone with endo might experience: fatigue, bloating, nausea, diarrhea and constipation.

My Story

Now that I have talked about what Endometriosis is, how many women are affected and the signs and symptoms to watch for. I want to share a little of my Endometriosis story. As far back as I can remember I was always plagued by severe menstraul cramps. I’m not talking the kind of cramps where you can just take a couple Advil and go on. I’m talking about menstrual cramps that left me stuck in bed with a heating pad on my belly and one of those heat patches (see picture below) on my low back. I always bled really heavy and had pain at all points of my cycle, through most of the month when the Endometriosis is at its worst. I also had issues with passing clots during my period for several years. However, I was led to believe that those issues were due to the specific birth control I was on.

I have tried multiple forms of birth control over the years, from
the shot, to the ring, and the patch. As well as many different pills but none of them were really able to regulate my cycle, and make it a “normal” 28 or 30 day cycle. It wasn’t until like 5 years ago when I finally decided my symptoms weren’t normal and I needed to find answers. The first time I went in my doctor felt that i just had bad periods and we needed to try a different oral birth control. However, things couldn’t be okay with the severe pain and bleeding issues I was experiencing. Also an adult women in her twenties should not have cycles that ranged from 10 days to 4 months apart, & everything in between, even while being on birth control. Before that I just assumed I was one of those women who would have painful periods. And that would take. awhile to regulate my cycle. Boy was I wrong.

Finally in 2011, after multiple scans, ultrasounds and dr visits, I made another appountment with my OBGYN. All the scans and testing had never showed that my appendix needed yo be removed, deapite the most intense pain I felt was right in the area of my appendix. At that appt she gave me a couple different options for treatment.

I had THREE OPTIONS

1. Start Depo Provera Shot– I declined this because I gaines 40 pounds the first time I took it. And honestly I just couldn’t deal with more wt gain at that point.

2. I could recieve the Depo Lupron Shot, which essentially throws you into early menopause. It is effective because you would no longer ovulate, which should decrease the pain. I also denied this option because I was only 26 and not ready to be thrown into menopause.

3. My last option was to have a Laparoscopic Surgery which is the only true way to diagnose Endo. It is also a treatment because as they go in and look they also get rid (burn off) of any of the endometrium that was in places it should not be. This is what I chose. I wanted to know we were treating what we thought we were.

If you aren’t knowledgeable on Endometriosis, the only true way to diagnose it is to have a laparoscopic procedure where they put air in your belly and inflate inflate it so they can see everything with a very small camera. I had my first surgery in November of 2011, when she got in there she saw that I did have significant amount of Endometriosis. Which required her to ablate those sites (aka burn off) those spots, and clean out everything she could, in hopes of getting rid of my pain. This is also the procedure that is done for ladies with endometriosis who are having a hard time conceiving, in hopes that it will help them get pregnant and carry a baby to term!

Finally after having my first laparoscopy in 2011 I received the diagnosis of Endometriosis. And was told at that point that it would most likely going to be hard to get pregnant. Over the following year we found out that getting pregnant and carrying a baby was just not going to be much of a risk for me between the Endometriosis and Lupus. It would put me and the baby at much to high of a risk!! This is probably the worst news I’ve ever gotten. Over the last several years I have spent a lot of time crying over not being able to naturally have my own babies. Being a mom has been a goal of mine for as long as I can remember. I never wanted anything more. But I have since come to terms with this issue, and hope to adopt one day. I have always felt a calling to adopt. There are so many babies and kids who are in foster care that need a good mama and aren’t getting adopted. So adoption will most likely be the way I have kids. Even though it’s not how I’ve always planned. Do I still have down days about the fact that I will never carry or deliver my own baby? Yes, and I feel that it is just normal to have sad days and negative feelings as you go through life with multiple chronic illnesses. When your ultimate life plan changes you have to adjust. You can’t just stay on that same path.

For other women who don’t have all the health problems that I do and are able to carry a baby, if they could get pregnant, there are all other options. So, please don’t ever let anyone tell you that just because you have Endo that you can’t have children. Because thats just not the case anymore. There are options like doing fertility treatments like IUI or IVF, or even a surrogate.

Endometriosis is not a condition I would wish on anyone. Not even my worst enemy. I have currently had three endometrial ablations done. I am able to get 18-30 months of little to no pain as long as I stay on Continuous Birth Control to prevent me from Ovulating every month. I will most likely be having surgery this year or next, because it will be two years since my last one in December.

My biggest recommendation for someone who has been newly diagnosed, or to someone who has had the condition for years, is to find a support group or a friend who has the same or similar condition. It doesn’t have to be the typical group, like the one that pops in everyone’s head. It can be one person who understands, maybe a friend or family member who struggles. Or a group on Facebook who deals with PCOS or Endometriosis. This condition is just like any other. You can’t run and hide. You will have times when you need support that in most cases your friends, family and spouse can’t give. Not because they don’t want to, but simply because they haven’t walked that road. The best things we can do for ourself and for others in our place is to find someone who understands the daily struggles, that we can talk to without worrying what they think!! The other thing I always push for with any disease process is to educate yourself. You can’t tell others what’s going on or decide what treatment is best for you if you don’t understand the condition.

Please feel free to share this with anyone you think could use the Information and support.

If you have the time check out the blue hyperlinks throughout the post. They are websites that have good correct information!!

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

Pain Medication…. The Debate

Ma’am I see you have scheduled pain medicine on your list of meds……… Yes, I take them for my PAIN….. What do you need pain medicine for????  Well, let’s see. Could it be the Systemic Lupus? Or Maybe the Endometriosis? Or could it be the interstitial cystitis? Or maybe the chronic migraines or fibromyalgia?????? 

For some pain medicine is the only way that they can make it through the day. Maybe even the only way they can get out of bed!!!  For others it’s just something they can take a couple times a week and be good. Why is it that those of us with documented conditions that are known to cause pain are still looked at like drug seekers? 
Have you ever been on the receiving end of questions about the medication you take that just gets you through the day? Do you ever feel like you are treated like a druggie or a criminal because you need prescription pain meds? 

There is nothing more frustrating to me then being looked at like I’m a drug seeker when I go in to the dr or pharmacy because I take pain medication. And heaven forbid I ever go into the ER because if a hemiplegic migraine or a horrible lupus flair, and need some relief. When that happens it’s almost for sure someone will look at me like I’m drug seeking. This shouldn’t be!!! All the people out there who have abused the system and abuse prescription pain medication have ruined it for all the rest of us. 

We shouldn’t be grouped into that category. Especially when we have multiple document conditions that can cause life altering pain. But we are. I see almost daily that there are lawmakers trying to pass a law that should prevent the abuse of narcotic pain meds. But if that happens will we stop getting the looks? Or will providers stop making us feel like we can’t seek medical treatment for fear of being treated like a drug seeker?? In my opinion no!!  It’s always going to be a problem for us. No matter what laws are passed and how much thy try to cut down on the abuse of prescription drugs I feel like we are always going to be treated poorly. It’s always an assumption that just because we take the meds we are a druggie. 

I’m not saying every doctor or nurse or pharmacy treats people like that. But I guarantee that at least 5 or more of the people who are reading this could tell us a story about how they were treated or not treated because of the medication listed on their home Med list!

How do we stop this unfair treatment? How do we stop feeling like everyone assumes the worst of us?  I wish I knew. But we need to find a way. Find a way to prove to the world that just because you take pain meds you are a seeker or a druggie. Prove to the world that these conditions that we suffer from everyday cause such pain that we need those meds. Prove to people that sometimes without those meds we wouldn’t be able to get out of bed. Or complete our daily activities. And sometimes even WITH the meds we can not complete any of our daily routines. Do we carry a sign that has a list of our conditions? Sadly, that wouldn’t help. Because if you haven’t experienced the pain of these conditions yourself you can never fully understand. 

How do we prove to the world that just because there are those scummy people who buy meds for abuse or steal meds to abuse them, that we aren’t all that way? Sadly, in this day an age there is such a high rate of abuse of prescription meds that I don’t know that we will ever be able to prove our case. According to the American Society of Addiction Medicine, Of the 20.5 million Americans 12 or older that had a substance use disorder in 2015, 2
million had a substance use disorder involving prescription pain relievers. And In 2012, 259 million prescriptions were written for opioids, which is more than enough to
give every American adult their own bottle of pills!!! 

I don’t know about you but to me that data is staggering. And the fact that Drug overdose is the leading cause of accidental death in the US, with 52,404 lethal drug overdoses in 2015. Opioid addiction is driving this epidemic, with 20,101 overdose deaths related to prescription pain relievers is beyond understanding.  I completely underatand why law makers and medical providers want to find a way to cut down on the number of people taking prescription narcotics. But what they don’t seem to understand is that there is a large population with chronic pain issues who truly require these meds. 

According to the American Academy of Pain Medicine; pain is a significant public health problem that costs society at least $560-$635 billion annually, an amount equal to about $2,000.00 for everyone living in the U.S. This includes the total incremental cost of health care due to pain from ranging between $261 to $300 billion and $297-$336 billion due to lost productivity (based on days of work missed, hours of work lost, and lower wages).  These numbers are crazy to me. Do all these people really need pain medication or are some of them abusing it? Probably a little of both.  

 Chronic Pain is a real thing and needs to be dealt with. And those who really need the meds should be able to get them without feeling like they are being looked upon negatively.  I hope and pray that there is a way for this to be done. But at this point I don’t know how to go about it!  (Okay rant over!)

If you would like to share your story about how you have been treated negatively because you take prescription meds or have requested meds because of you condition. Please place those stories in the comments or email me. I would love to read them and compose another blog post with everyone’s story. 

-Amber 
Resources:

http://www.asam.org/docs/default-source/advocacy/opioid-addiction-disease-facts-figures.pdf

http://www.painmed.org/patientcenter/facts_on_pain.aspx

The Truth About Endometriosis 

Endometriosis a condition that only affects women and can change their lives forever. Why am I discussing this you ask? Well, along with other conditions I have talked about this month, March is Endometriosis awareness month.  A lot of people have heard of the condition but don’t really know what it’s all about. Or how if affects a women’s life. So today I dove into some research about Endometriosis (Endo) so I could share with you.

What is Endometriosis? According to the Endometriosis Association, Endometriosis is a painful, chronic condition that affects at least 6.3 million women and girls in the U.S., 1 million in Canada, and millions more around the world. It occurs when the tissue that which lines the uterus (tissue called the endometrium) is found outside the uterus. It can be found in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity. Endometrial growths may include the bladder, bowel, vagina, cervix, vulva, and in abdominal surgical scars.

The Endometriosis Association says that “the misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: each month the tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body through the vagina, but the blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation — and can cause pain, infertility, scar tissue formation, adhesions, and bowel problems.”

What causes Endometriosis?

According to Endometriosis.org “There is no known cause of endometriosis but it is highly likely that certain genes predispose women to develop the disease [6]. Thus, women have a higher risk of developing endometriosis if their mother and/or sister(s) are also affected [7]. It is possible that age when the menstrual period starts, other gynaecologic factors, and environmental exposures influence whether a woman is affected. Whereas evidence has been weak with regards to exposure to dioxin (an environmental pollutant) [8] some evidence now supports exacerbation of its symptoms due to PCBs.”

What are the symptoms of Endometriosis?  

-Pain before or during periods

-Pain with sex

-Infertility

-Fatigue

-Painful urination during periodsds

-And possibly diarrhea, constipation, nausea.

Who is affected by Endometriosis?

It is estimated that’s endometriosis affects nearly 1 in 10 women during their reproductive years (ie. usually between the ages of 15 to 49). However, endo could start as early as a girl’s first period, any may not resolved by menopause, especially if the woman has scar tissue or adhesions from the disease and/or surgery.

How is Endometriosis diagnosed?

Diagnosis of Endo is tricky, because it will not show up on any CT Scan, X-Ray, MRI or Ultrasound. Other than being diagnosed by the symptoms, which is hard to do because the symptoms on Endo could also be the symptoms of many other things. The only really way to diagnose Endo is surgery. This is done laparoscopically. They go in and take a look around and if Endometriosis is found they can take care of those spots while they are in there.

How is Endometriosis treated and is there a cure?

At this time there is no known cure  for Endo. However,  endometriosis can be treated effectively with drugs. That being said most treatments are not suitable for long-term use due to side-effects.  Surgery can be an effective treatment, as they remove endometriosis lesions and scar tissue, but success rates depend on the how extensive the disease is and the surgeon’s skills.  Some say pregnancy is a cure because pregnancy may relieve symptoms,  but in the long term this is not a cure for the disease. Hysterectomy, with removal of all the disease at the same time, may relieve symptoms, but had not proven to be a cure  either. Removal of the ovaries when they do the hysterectomy increases the chances of pain relief but also causes the patient to go into immediate menopause.

It has been thought at times that Endo is an autoimmune disorder, however this has not be proven at this time.

-Amber

http://endometriosis.org/resources/articles/facts-about-endometriosis/

http://www.endometriosisassn.org/endo.html

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

But You Look Fine…..

We’ve all done it.  We’ve seen that person get out of the car at the local shopping center while parked in a handicapped spot. And thought, “There’s nothing wrong with them, who do they think they are?”  I’ll admit it I’ve thought that. And I think that’s the mentality of most. If you can’t SEE the disease it’s not there. Right?   NO Oh so WRONG!!!! Here’s some food for thought. 

So if 96% of illnesses are invisible that just leaves 4% that one can outwardly see. In 1997, there were 26 million Americans considered to have a severe disability and only 7 million of them use a wheelchair, cane, crutches or walker (U.S. Department of Commerce).  So you can only imagine how that number has increased in the last twenty years with medical advancement.  Chances are someone YOU KNOW has an illness that they are suffering from that you can’t see or may not even know about. 

So what exactly are invisible illnesses? They are conditions that you can not see by just looking at someone. These could be things such as: Anxiety, depression, mental illness, Autism, Chronic Pain, Chronic Fatigue Syndrome, Fibromyalgia, Lupus, Endometriosis, Interatitial Cystitis, Chrons Disease, EDS, epilepsy. Just to name a few. 

So how do they hide their disease and how do they feel? Here’s my story!

You may look at me and simply see a healthy-looking, overweight 30 something. However, just by looking at me you would never know the things I suffer from.  You wouldn’t know I have disabiling migraines, Systemic Lupus, Insomnia, Fibromyalgia, Interstitial Cystitis, Endometriosis, and Adrenal Inssufiency.  None of these things can be seen outwardly. 

You wouldn’t know that I am almost ALWAYS in pain somewhere. Whether it be my back or my hands or even my feet. Something always hurts even on the good days. You wouldn’t know that chances are I didn’t sleep well the night before because of said pain. And I’m so tired that it took 15 extra minutes to convince myself to get out bed. Even after taking my medicine 45 min before finally rolling out of bed.  And then I spent another hour getting through the process of showering, hair, makeup and getting dressed because I had to take 4 breaks. And by the time I’m done with all that, I really just want to get back in bed because I’m EXHAUSTED and it’s not even 8am. 
You won’t ever see me cry because I had to cancel plans for the 3rd time with my best friend. Because that is something I hide. You wouldn’t know that it rips me apart to have to stay home when everyone is out doing their daily activities. You wouldn’t know that grocery shopping is the vain of my existence. And something I have to mentally prepare for because it…..takes….so…..much……energy. And then actually putting the groceries away……that’s a whole different story. 

You will never see my utter frustration with constantly being sick. I’m sick and tired of being sick and tired. Go ahead and think what you will. “She can’t really be sick again, can she!?”  “I bet she just doesn’t want to work so she says she sick!” Let me answer those questions. Yes, if I actually tell you I’m sick. I’m sick. The rest of the time I hide my illness for fear of being judged. As for just wanting to stay home. NO. I would much rather be in the workplace than on my couch. I didn’t go to college for 6 years not to use my degrees. 

By looking at me, you would never know that I may have had a migraine for three days. And am fighting the constant urge to throw up because of the migraine. You wouldn’t know that I might be having a hemiplegic migraine and my hands are going numb, and it’s hard to talk. You might see me in public with my shades on and think nasty things about me, none of which are true. I don’t have a hangover. And I wasn’t beaten up. I simply have a migraine that won’t quit. So don’t be so quick to judge. 

To talk to me you still probably wouldn’t see any difference in me. That is until the Brain Fog hits. It’s a thing!! Much like pregnancy brain or Chemo brain. You probably wouldn’t know that I constantly lose my train thought, sometimes in mid sentence. Or that some days I spend a lot of time looking for things that are right in plain site. You will probably notice me hunting for words while speaking. No, I’m not on drugs, or alcohol. I simply have brain fog associated with my invisible illness. Remember it’s a real thing….. look it up if you like. 

By looking at me you wouldn’t ever know that often my bladder is on fire and I have to urinate all the time. And I may get up four to five times a night to do. Yes at the ripe ole’ age of 31!!   You also wouldn’t know that many days out of the month I have severe pain in my belly. Either caused by the Interstitial Cystitis or by Endometriosis!  The pain can be disabling at times. And I would like to cry and lay in the fetal position. But I don’t! You also wouldn’t know that my chance to carry my own baby is slim to none now due to my invisible illnesses. The one thing I have wanted more than anything my whole life is no longer a possibility. But you can’t see that! 

Another thing you would never see by just looking at this 31yo lady is that the depression can be real. If you suffered from all the things I mentioned above you would probably be depressed too. You probably wouldn’t know that there are days when getting out of bed feels pointless. And crying is the only thing that seems to help.  Anxiety is also real. You never know when you get out somewhere if one of these diseases will strike its ugly head. Then what happens? How do you excuse yourself to head for home? Will I make it home safely? Should I bother my working family to come get me? All things you have to worry about because you never know when you could get sick. 

Any invisible illness can take over your life. And not usually for the good. There are so many struggles. Loss of friendships and family members because they don’t understand. Or don’t take the time to learn. Loss of wages/job because of being sick. And anyone who says getting disability is Easy is so WRONG. It can take years for people with an “Invisble Illness” to get approved. Because just like you the judge can’t see if either. We look fine on the outside.  

If you take anything away from this please thing before you hurl thoughtless, mean words at people. Try to be less judgemental when you see a young person parked in the handicapped spot. He or she probably needs it or they wouldn’t have it. Also, try to be a good friend! And know that even though we may cancel 5 times before we can actually have dinner with you, doesn’t mean we don’t value your friendship. It just means that we are listening to our bodies. Lastly, remember what your Mama taught you. “If you don’t have anything nice to say, don’t bother saying anything at all!”

I hope this encourages others to share the things that no one can see outwardly due to their Invisible Illness. Let the world know what you go through. And others in the same boat know that they are not alone!!

-Amber