Confessions of the Chronically Ill

Co-Written by myself & contributor Amy Nora

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

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

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

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

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

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

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

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

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

With Love,

Amber & Amy

What You Need to Know About IBS

Irritable Bowel Syndrome……. not a topic that most like to openly discuss. However, for those of us who deal with IBS all the time, it’s something that needs to be better understood! And today is the perfect time to be writing on the topic due to the fact that April is IBS Awareness Month. Spreading awareness is one of the only ways we can help the world to better understand this life altering conditions. People in general don’t understand that it’s not just having periodic abdominal pain, constipation or diarrhea. It really is a condition that impacts many parts of your life, not just your health. Awareness may help to explain to others why we only eat certain food or that you absolutely can’t eat others. And help people around us to understand why you can’t eat out of the house without issues or why you never eat out. Awareness also helps everyone understand and learn a person’s triggers and needs for treatment. Everyone is going to have a different experience with the condition, and the triggers for one person won’t necessarily be the trigger for another. Examples of IBS triggers could be change in routine, or anxiety/nerves or even certain kinds of food. That being said like many other conditions everyone who has IBS will have a different journey and story to tell.

Let’s look at some statistics! Irritable Bowel Syndrome (IBS) is said to be the most common of the functional gastrointestinal (GI) disorder NOT only in the US but also worldwide! And an estimated $1.6 Billion is spent yearly on healthcare for those with the condition. IBS is said to have an estimated prevalence rate of 10-25%. There is such a large range because a lot of people will not seek care for IBS symptoms until it is really impacting their life. According to the Statistics only about 30% of people who have symptoms will actually consult a doctor. One bit of information i found to be interesting is that IBS has a higher prevalence rate in women and people who work in professional or managerial roles. IBS can really be found in any person at any age but research shows that most people will experience their first symptoms before the age of 35. That being said IBS can really happen at any age, but the peak ages for dealing with IBS is between 25 and 54 years. IBS is also found to have a genetic link. Anyone who has a biological relative with IBS is TWICE as high than those who have no family with the condition.

So what really causes this extremely prevalent disorder? Sadly even though we live in a time of research, the exact cause of IBS isn’t known. Researchers believe that a faulty communication between the brain and GI system could be a cause. In some cases the miscommunication can cause abnormal spasms or cramping of the intestines. Those spasms may increase or decrease the passage of stool causing constipation or diarrhea! People with IBS may have symptoms caused by:

  • Eating (even though no particular foods have been directly linked with IBS)
  • Stress &/or issues like anxiety or depression
  • Hormonal changes such as the menstrual cycle in women.
  • Medications (especially antibiotics)
  • Infection of the intestines like Salmonella or E. Coli
  • Genetics, (as noted above in the discussion of statistics) IBS is more likely to occur in people who have a family history of the condition.

Now that we know we aren’t alone in our struggle with IBS, and we know the potential causes, what are the symptoms to watch for?!?! Everyone will have different symptoms, that’s why knowing the symptoms of IBS is an important way to help determine which of the three types of the condition you may have. Everyone has stomachaches and trouble going to the bathroom from time to time. But for people who have IBS these symptoms can be disabling.

The following are general symptoms:

  • Abdominal pain
  • Bloating
  • Gas
  • Constipation (may alternate with diarrhea)
  • Diarrhea (may alternate with constipation)
  • Bowel movements that feel uncontrollably urgent, difficult to pass or incomplete!
  • Passing clear or white mucous with the stool.

I mentioned above that there are three types of IBS, while looking at the symptoms let’s also look at the types of IBS before diving into how to diagnose.

  1. IBS with constipation- People suffering with this kind of IBS will present with stomach pain & discomfort, bloating, bowel movements that are abnormally infrequent or delayed and may be lumpy or hard!
  2. IBS with diarrhea- People who have this type of IBS will likely complain of stomach pain & discomfort (just like the above type), an urgent need to move your bowels, very frequent bowel movements, loose &/or watery stools
  3. IBS with alternating constipation & diarrhea. This kind requires no real description. A person with this type of IBS will experience a combination of the symptoms noted above with the other two types of IBS.

Lets take a moment to look at how a person is diagnosed with this condition. In order for a doctor to properly diagnose IBS, there are certain criteria that a person must meet. A person must meet TWO of the THREE following criteria in order to be diagnosed.

  1. A bowel movement that relieves the stomachs and suffering.
  2. There is a change in how often you have bowel movements.
  3. The stool looks different.

The above standard diagnostic guidelines for IBS is called the Rome IV criteria. This criteria states that in order to be diagnosed with IBS a person must have the above stated symptoms for at least 1 day a week over the last three months, and that the symptoms must have started at least 6 months prior. If you start having symptoms and believe it could be IBS doctors encourage people to start keeping a symptom journal/diary. This is important because keeping a journal can not only help diagnose the condition, it can also be show patterns in symptoms. The journal may also show if there is a dietary link to the symptoms. The following are recommended topics to be included in a symptom journal!

  • Date and time symptom started and ended.
  • Description of symptoms (what symptoms are experienced during the current flare).
  • Where were you and what were you doing when the symptoms started.
  • Food eaten the hours leading up to the attack.
  • Amount of food eaten (using a 1-10 scale, with 1 being a very small amount and 10 being an excessive amount)
  • Any meds taken to help relieve symptoms.
  • Any and all suspected triggers.

There are also more definitive testing that can be done to diagnose the condition. Doctors can order stool studies, lab work and even X-rays and other imaging to help rule out other conditions, and decide if IBS is the issue.

  • Stool studies- ordered to check for and rule out infection or problems with the intestines ability to absorb nutrients.
  • Flexible Sigmoidoscopy- This imaging study is done to examine the lower part of the colon (the sigmoid colon) with a flexible, lighted tube.
  • Colonoscopy- The doctor uses a small, flexible lighted tube to examine the entire length of the colon.
  • X-ray or CT Scan- These tests are ordered so the dr can see images of the abdomen and pelvis to rule out potential causes of abdominal pain. The doctor can also order a Lower GI Series, which consists of filling the large intestine with an opaque liquid (known as barium) so they are able to see any potential problems on an X-ray

Once the diagnosis has been decided treatment is started. But what exactly is the treatment for IBS?? Well, treatment really focuses on relieving symptoms so that you can live as normal a life as possible. Symptoms for many can often be controlled by learning to manage stress, and making changes in diet and lifestyle. Common ideas for doing so:

  • Avoid foods that you have noted to trigger your symptoms.
  • Eat foods that are high in fiber.
  • Drink lots of water
  • Try to exercise regularly
  • Get recommended hours of sleep.

Your doctors may also suggest eliminating certain types of food as well. The foods that you might be asked to eliminate:

  • High-gas producing foods- If you experience gas or bloating you might try avoiding carbonated and alcoholic beverage, caffeine, raw fruit, cabbage, broccoli and cauliflower, to see if doing so will reduce symptoms.
  • Gluten- research has shown that some with IBS have reported improvements in diarrhea if they stop eating gluten (wheat, barley and rye) even if they don’t have celiacs disease.
  • FODMAPs- some people have found they are sensitive to certain carbs such as fructose, fructans, lactose, and some others known as FODMAPs. That stands for fermentable oligo-, di-, and monosaccharides and polyols. FODMAPs can be found in some grains, vegetables, fruits and dairy. IBS symptoms may ease up if a strict low-FODMAP diet and slowly introduce food one at a time, in order to determine which foods cause more issues.

Some people find it easier to see a dietician to help to make these dietary changes. Also, depending on symptoms a doctor may suggest some of the following medications.

  • Fiber supplements – these may help to control constipation.
  • Laxatives- these may be encouraged to help manage constipation if fiber supplements don’t help. Milk of Magnesia or Miralax might be prescribed.
  • Anti-diarrheal meds- A Doctor May suggest over-the-counter medications to help with diarrhea, such as Imodium. The doctor might also recommend meds like bile acid binders, like Prevalite, Colestid or Welchol.
  • Anticholinergic meds- These medications can help to relieve spasms of the bowels, and diarrhea.
  • Tricyclic antidepressants- These medications can benefit those with IBS in two ways. They can help relieve depression, as well as working to inhibit the activity of neurons that control the intestine to help reduce pain.
  • SSRI antidepressants- These medications work to treat anxiety and depression, as well as pain and constipation.
  • Pain Medications – can be used to ease severe pain or bloating

When people heard about IBS in the past most thought that is was just a coverall diagnosis for anyone with abdominal pain and bowel issues. That it was a diagnosis when the doctors don’t know what the real problem was. However, now we know that IBS is a real condition that causes real issues for many many people. And that it can truly be impacted by stress and anxiety! Over the last decade diagnosis and treatment options for those with IBS has greatly improved. Now people with the condition no longer have to suffer quietly. In years past it was almost considered taboo to speak openly about issues you might be having with your bowels simply because many felt like it was a topic that shouldn’t be discussed. Now there are all kinds of support groups and Facebook groups where people can go an openly discuss these issues. People no longer have to suffer quietly and feel alone. As discussed above we now know there are many potential causes for IBS, since that discovery has been made treatment options are much better. I know when I was diagnosed 15 plus years ago I was told that it was was NOT a condition that is impacted by diet or stress level. Now that we know that this is not the case, those of us who suffer know how to better treat the symptoms and make life changes. Like any condition we are only going to continue to learn more about the causes, the diagnosis and treatment through research. We can hope that one day we will be talking prevention and not just treatment.

With Love,

Amber ❤️

Resources:

https://www.mayoclinic.org/diseases-conditions/irritable-bowel-syndrome/diagnosis-treatment/drc-20360064

https://www.webmd.com/ibs/default.htm

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

The Grass is Always Greener 

You know the saying you’ve heard since you were a kid “The grass is always greener on the other side?” Well, I’ve realized in the past few months that this applies to more than just cows wanting to eat from the other side of the fence. That there really is more to it!! It definitely applies to working in the home vs working outside if the home. It seems like those that get to stay home or work from home want to work outside the home, and those outside the home want to be at home.  It’s a never ending battle. 

Once I graduated with my Nursing degree in 2007 I assumed I would work in some way up until retirement. I thought I might want to go part time at some point when I had babies. But I never thought that at ten years after graduation, at the age of 32,  I would no longer be working at all. Well, not at least outside of the medical field. But it’s happened!!!!!! I am no longer working as a nurse. But as an Indeoendant Distributor for a cosmetic company. Basically an MLM. It does bring in a little money and I am so very grateful to have found something that I can do from home. Heck, I can even do it in my jammies from my bed. However, this is definitely not where I saw my life going ten years ago. 

However, I know that I am not alone in saying it’s totally different when you choose to stay home with babies or your family. Then it is when are forced out of the workforce due to an illness or disability. Since the end of August I have had to stay home due to illness. I lost my job after totaling my car in a accident where it is likely that I had either a seizure or a cardiac event! The accident was just the icing on the cake, so to speak. I had missed more days than any other employer would have allowed. And this company was so gracious to work with me and did everything they could not to let me go but after the accident it was clear it was just what had to be. At first after losing my job it was kind of nice to be home, to not have to get up to an alarm or get dressed up everyday. However, that lasted about two weeks, and then I was bored out of my mind. 

I can’t tell you though the number of times, those of us who are unable to work and have to stay home due to illness or disability, hear how nice it must be to be able to stay home and not have to work.  What people don’t understand is that there is a large population of us who have been forced out of the work force would give ANYTHING to get back to work!!! And it’s not by any means that we don’t HAVE to work. It’s not like we chose to retire and are now happily traveling the world and getting to spend time with family.  Most of us who were forced out of our jobs by our health are doing quite the opposite. We are stuck at home, usually leaving mostly just to attend a multitude of drs appointments, go to the grocery store or maybe church. If we are lucky we might find enough get up and go to go out to lunch or dinner with friends or family. But usually those plans get rescheduled because of how we are feeling!!  So we are NOT living the life. 

I would give anything to go back to work. To be able to go back to working the Cardiovascular Step Down unit wher I worked the majority of the time before I left as a Charge Nurse. This was what I loved. I loved the kind of  patients we worked with, the body system we were working with and really most things about my job!! But then the Lupus monster hit!!! I could no longer physically meet the demands of that job. So it was time to move on to things less physically demanding. Since the Summer of 2012  I have worked several jobs,  but none of them were what I loved. And over the years my health continued to deteriorate to the point where I was calling in more than I was actually working due to migraines and pain and constant illness. So I was no good to any employer or fellow employees at this point due to my Lupus, migraines and adrenal insufficiency!  

What people don’t take into account is the risk for increased rates of depression when people are no longer able to work for whatever reason. Now that person may no longer have an income or a very small one, so that puts a huge stress on the person as well as the family. Due to the loss of job  they may have lost their health insurance. And this is really not an option for those with chronic disabiling diseases. Without insurance we could potentially get stuck with thousands and thousands of dollars of medical bills that you gave no idea how you were going to pay them. Or if they can get government insurance it may be to pricey for them to get!!. There is also the potential for lack of adult face to face conversation and a potential loss of friends all related to the disease and the the job loss. Both of which can also cause or deepen a person’s depression. 

I looked up some statistics on the Buteau of Labor Statistics Page. Per their site, “Adults age 21 to 64 with disabilities had median monthly earnings of $1,961 compared with $2,724 for those with no disability.” And that’s a median number. I know many people who only receive -$500-$1000 a MONTH in social security that they are expected to live off!! I also found this statistic that I found interesting.  “Only 17.9% of persons with a disability were employed.”
According to the U.S. Census Bureau “Nearly 1 in 5 People Have a Disability in the U.S., Census Bureau Reports Report. 
About 56.7 million people — 19 percent of the population — had a disability in 2010, according to a broad definition of disability, with more than half of them reporting the disability was severe, according to a comprehensive report on this population released today by the U.S. Census Bureau.”

Those statistics were not imperative to include but I thought it was a good look at just how many people are disabled in the United States. For me the take away of this blog would be that most people aren’t happy where they are. If they have to work to provide they wish they could be home with their families. While those of us who can’t work would give anything to get back into the workforce! I also want to people to understand that many of us who are disabled don’t want to stay home and not work. We would love to return to the careers we went to college for and loved. Not all people on disability are just living off the system and not working because they can. Personally, I WOULD GIVE ANYTHING TO BE ABLE TO WORK AGAIN outside the home. 

I hope this gave you some insight!

Amber  
References:

https://www.census.gov/newsroom/releases/archives/miscellaneous/cb12-134.html

https://www.bls.gov/news.release/disabl.nr0.htm

MVA – How They Can Have an Impact on More Than Just the Car. 

Man….. you don’t think about how one situation can totally mess up your whole system until it happens. I realized that a week ago today when I was in a car accident. It was nasty. But nothing broken. Just a concussion and a torn up knee. And lots of bumps and bruises. (And the other person wasn’t hurt either.)Then the realization set in yesterday that I am now in a lupus flare. And my adrenal glands are on their way to sending me into an adrenal crisis!!! I wrote my rheumatolgist to see if I could do steroids or anything to prevent the worsening flare. And she told me LIGHT STRETCHING was the only thing I could do. Really?!?!? You hurt as bad as I do everyday and then get on the floor and stretch. If I could even get to the floor there is no way in hades that I could get up. With my knee in an immobilizer and my arms so sore from crutches and the accident I’d be stuck. And they weren’t kidding when they said day two and three would be worse. Holy moly! It’s insane. 

The scariest part of this whole ordeal wasn’t the accident itself. Simply bc I don’t remember it. But THAT statement is the scary part.  I have absolutely no idea what happened. The ambulance came quickly and whisked me away to the Emergency Room. That’s when everything stopped. Apparently they didn’t have any rooms in the back, so they set me in wheelchair with my c-collar, crying like a weirdo in the WAITING ROOM. This is where I sat for about two hours before I saw a nurse or dr.  Ya I get they were busy. But one would think that a car accident with loss of consciousness would trump other things but I guess not.  The whole time I was at the hospital I sat and balled. Like sobbing. I just couldn’t quit. But I am so glad my mom was there with me the whole time. I wasn’t always nice to her,but we blame the pain meds and the accident on that. But she stayed right there with me. Even at 32 it’s nice to have your mom around when you need her!! 

I’m a cryer yes. But I never sit and cry inconsolablely for a hour.  That’s not my norm. So, I can only assume that it was the shock of the accident and concussion I had causing all those tears. The ER Dr told me I had no broken bones or major injuries. Put an immobilizer on my knee and gave me some crutches and sent me out the door. I was glad to go home but the really pain and soreness was just setting in. Man you never believe how much everything is going to hurt for days following an accident until it happens to you. I am still sore and very bruised and it’s been a week today. And I still can’t bear full weight on my leg.  Sigh. We are doing some medical tests and will give my knee another week go see if it heals on its own. 

So not only am I deal with my pain and emotions from the car wreck. I am now dealing with the fact that I lost my job. I understand where they are coming from. My absences make it hard to count on me. And now that I can drive or work until the dr clears me. (We are going to test my heart and do an eeg to see if I’m having seizures.) That means I have no idea how long it will be before I am cleared to work or drive. I am not mad at my boss as I know she is looking out for her patients. And right now they need someone who can be there all the time. She did say that if I ever want to come back I can. That I’ve not burned any bridges. This company was fantastic to work for. And they went above and beyond to make sure I had what I needed. And gave me more chances than anyone else would have with my absences. But It still sucks because I have to go pick up all my belongings thatbwere in my office. Which is sad bc I loved my job and I’m sad that part of my life is over. 

Now the question is what am I going to do for money $$. Because sadly we can’t live free in today’s society.  I have become a distributor for the makeup company Senegence. And in doing so have been able to make decent money. So I’m praying that I can continue to grow my buisness and that I can do this and not have to go to work again outside the house at least not right away!! If not I am not sure what route I will go. Only time will tell!! 

So many emotions and thoughts are swirling through my head. Who would have ever guessed that losing your car in an accident could be so emotional. I guess for most it’s probably not. But buying that car was the last thing my grandpa and I did together before he passed several years ago. So I feel like that car was my last earthly connection I have to him. And that’s hard.  Because I miss him so much everyday. 

Anyway, I’m a little rusty on this whole blogging thing if you can’t tell. My thoughts have been all over the place. Which for a Lupie isn’t that strange but usually my writing is better than this. But I wanted to share my thoughts and what has been going on in my life. I promise I will now be getting back into blogging now that I have a little more free time!!

Love always ❤️

Amber 

Where Did All The Money Go????Bills Pills Bills Pills…..

By Amy Nora
It is the never-ending cycle of what many of those with Lupus and other Chronic health conditions struggle with. The financial struggles that people with SLE face can be a challenge on many levels. According to the Lupus Foundation of America, the average lupus patient spends approximately $12,000 annually on treatments; however, many treatments cost several thousand dollars a month or every few months. There is also the problem of loss of income due to the inability to work full time or the need to go on disability. The average total annual breakdown cost per Lupus patient in the United States is $20K.  

This is an extraordinary amount of money to the average person or family. There are ways to help soften the financial impact though. First, drug manufacturers offer assistance programs for patients that are not on Medicare, Medicaid, or Tricare. If you are on any of those three programs, it is illegal for them to assist. These programs offer help with the medications that have copay’s of several hundred to several thousand dollar copays. Second, are organizations that have grants or funding available to assist with various costs associated with various conditions or drugs that are not associated with drug manufacturers so they do not fall into the prohibitive statues under the law. The most heard of and known one is the Healthwell Foundation to those in the Lupus community. Third, if you can meet with a financial advisor to work on medical expense planning. This is now just as important as retirement planning for those with chronic medical conditions. This is not Health Savings Accounts, this is not a specific type of account, this is a strategy based off expenses and potential length of ability to work.  

There are honest and hard financial discussions that must be had if you have a medium to severe case of SLE. I would encourage you to plan wisely. When those expenses come that none of us can plan for, let us make sure we use what resources we can to lessen the impact as much as possible.  

We already have to deal with pills, let’s do what we can about those bills…

 

**********

http://www.resources.lupus.org/entry/facts-and-statistics

 

 

Cyclic Vomiting Syndrome 

When you hear CVS what do you think? If you are like most you probably think of the big box pharmacy. And you wouldn’t be alone in this. That’s what most would think. However, if you have CVS or know someone who suffers from it, that is not the first thing that comes to mind. You would probably think of Cyclic Vomiting Syndrome. What is that you ask!? We will discuss that in today’s post. We will look at what CVS is, what the symptoms are, what the treatment is.  And we will get the perspective of a CVS patient. Let’s not waste anymore time. Let’s just jump right in. 

According to the National Institute of Health, Cyclic vomiting syndrome, sometimes referred to as CVS, is an increasingly recognized disorder with sudden, repeated attacks—also called episodes—of severe nausea, vomiting, and physical exhaustion that occur with no apparent cause. The episodes can last from a few hours to several days.  Wow that sounds great right?  No, okay you are right. It’s miserable. Absolutely 100% miserable for those who suffer from it. Many who suffer from this struggle to find triggers. Meaning they can’t pinpoint what causes it so the can reduce the number of attacks they have. So they will vomit everything they try to consume for hours or days. It’s the a stomach bug on steroids. It often hits fast and without much warning and depending on the attack like said above can last for hour, days or even longer.  This may cause the person to have to stay in bed and miss work or school for long periods. And the person suffering may even have to seek medical treatment for IV fluids or other methods of treatment. Which we will discuss later. 

How many people suffer from CVS? The exact number is unknown. But according to the NIH it is estimated that it could affect 4 to 2,000 per 100,000 children. The condition is diagnosed most often in children, although there have been some recent studies that suggest that the condition may begin in adulthood as commonly as it begins in childhood. 

So what causes Cyclic Vomiting Syndrome? Sadly, the exact cause of CVS is unknown. But experts believe there are some things that can contribute to the disease.  Some of these conditions as listed by the NIH are as follows: gastrointestinal motility which is the way food moves through the digestive system. Or moves at a slow pace through the digestive system. A persons central nervous system function, which includes the brain, spinal cord, and nerves that control bodily responses.  A persons autonomic nervous system function, which is the nerves that control internal organs such as the heart. Or the person may have hormone imbalances. It is also thought that it’s possible that an abnormal inherited gene may also contribute to the condition.  

There are also triggers that can cause an attack of CVS.  Here are just a few: emotional stress, anxiety, or panic attacks, infections, eating certain foods, like chocolate, cheese, or additives such as caffeine, nitrites which are commonly found in cured meats such as hot dogs, and MSG. Other triggers could include: hot weather, menstrual periods, motion sickness, overeating, fasting, or eating right before bedtime or physical exhaustion or too much exercise. So basically, after looking at the list of triggers, it’s possibk that just about anything can trigger an attack. 

What are the symptoms of CVS? The most common symptoms are severe vomiting that occurs several times per hour and lasts less than one week. And also three or more separate episodes of vomiting with no apparent cause in the past year.  A person with CVS may also experience abdominal pain, diarrhea, fever, dizziness, and even sensitivity to light. These symptoms may lead to dehydration which can be a life threatening condition. 

So now we know what CVS looks like and what causes it. But the more important question is what can be done to treat a person who is experiencing a CVS attack or flare. There is sadly no cure at this time. So treatment is more symptom management.  A person with CVS may be given anti-nausea meds, sedatives, medicines that suppress stomach acid, or antidepressants.  A person may be given meds that are used to treat migraines. Those meds can be helpful in treating or preventing a CVS attack. 

When I spoke with Melissa Kline, a CVS patient she gave me some insight into what it’s like to live with this condition. She stated that she has been able to learn what  her triggers are.  For her Benlysta (which she receives as treatment for her lupus!) and stress are the big two things that will almost always trigger an attack. She states that some patients can catch their episodes early with anti nausea meds, while others end up in the ER to be given enough medication to mildly sedate them. She said that sedating a cvs patient is kind of like a reset button. By hitting that “reset button” they can slow or stop the symptoms, and give the patient a break. Many times she and other CVS patients end up in the ER due to dehydration. So they are treated with IV Fluids and meds to control the nausea so they are able to stop vomiting. Cyclic Vomiting Syndrome is a horrible and challenging disorder and no one should have to deal with it. She is hoping that they are able to find better treatments and a cure in the coming years as more awareness is brought to the condition. She also suggested that anyone who has the condition or thinks they might visit cvsaonline.org. 

So help us bring awareness by sharing this article after you read it. 

-Amber

http://www.mayoclinic.org/diseases-conditions/cyclic-vomiting-syndrome/basics/symptoms/con-20028160

https://www.niddk.nih.gov/health-information/digestive-diseases/cyclic-vomiting-syndrome

http://cvsaonline.org/

Have You Laughed Lately?

Maintaining a sense of humor when you have a chronic illness is vital.

Roses Are Red Violets are Blue,

You have a Chronic Disease, the joke is one you…

Well, except it is not a joke. It is no laughing matter. We face challenges on a daily basis that would cripple most; we are forced to make decisions and then live with those decisions that are not always pleasant. Yet in spite of this, we keep going and are a pretty amazing group. There are days when laughing or trying to find something to laugh about is impossible. Which is why, that is the most important moment to find something to laugh about. “A day without laughter is a day wasted,” according to Charlie Chaplain. Let us explore what that means in the context of chronic illness.

Maintaining a sense of humor when you have a chronic illness is vital. We all know that after a while that sense of humor gets cynical, and sometimes a little sick in the head. As a demographic, we are more likely to suffer from depression. While this will not eliminate depression, it will lighten those moments or give us a brief reprieve when at that moment all seems dark.

You know that friend that always has the “cure” for your disease. Drink the boiled warts of wild boar, mixed with two teaspoons of lemon juice, a tablespoon of apple cider vinegar, mix in the ash of the death star, and when all done add to a triple green smoothie of kale, spinach, and broccoli and you will be magically healed. Oh, you thought that orange creamsicle smoothie was good? No, change that to a triple green of kale, spinach, and broccoli, add the powder of one dried beet, and drink when the rooster crows at dawn. It is pure magic; the immune system will heal itself. Wait….. no don’t wait.

Go on, admit it, we all have that one friend that will give us that magic cure to help us. They may have the best intentions, but the eye roll just came out didn’t it? You can admit it.

Do you have that go to tv show or movie? What about that friend that makes you laugh? We know that humor makes us feel better physically and emotionally. So the next time you are feeling down, or depressed, play with your puppy, cat, rabbit, or pet; find that YouTube video, call a friend, put on a show, or just make yourself laugh. Even the physical act of smiling releases those happy little endorphins. Never underestimate the glorious feeling of joy as that laughter rips through your belly as you lose control…. Just don’t pee your pants because you were laughing so hard. Oooops, some of us can’t help that.

“ I have not seen anyone dying of laughter, but I know of millions who are dying because they are not laughing.” Dr. Kataria

Support System…Why They Are Important. 

Support system…… what is it? Where do we find them? Why do we need them? Who needs it? 

A Support System is defined as a network of people who provide an individual with practical or emotional support. Anyone and everyone needs support this doesn’t have to be something just for people with chronic illness. People who have gone through a bad marriage, or abusive relationship or drug addiction all need a support system as well.

Research has shown that those with large social support systems often will have better health, live longer, and overall better well being. Friends and family have the ability to make you more resilient in times of loss, stress, or setback and they can even make those periods of good times better.
There are lots benefits to having supportive relationships, such as knowing that you have people who can provide you with information, advice and guidance. As well as assistance in times when you are uncertain. This aspect of support systems can be comforting and make you feel more secure.
When someone has a chronic illness or is in a bad relationship, they often feel isolated. And feel that no one ever understands them. So a support system is a must. No matter where you find that support. Some find support in the church, or their family, or friend. Or maybe you have found support groups for their illness that you feel like you can open up to and lean on. No matter where you find this support it is essential that you find something. 
Once you find a support system, how can you use it to your advantage? Well, that kind of will depend on what kind of support system you have found. 
Family members for instance when it comes to things like lupus will naturally step into the supportive role at times because lupus runs in families. So you may have someone in your family who has been in your shoes. Or it may go the other way and your family will be little support, simply because they don’t understand. A little education can oftentimes change that. Family also has known you through everything unlike anyone else and can oftentimes provide that unconditional love that is necessary! 
Friends and neighbors can often provide food in stressful times since they are close by. If you are close to your neighbors they may also provide a sense of comfort during times of stress. Friends can provide the laughter and love you need. And sometimes those days away for fun so you can forget about your current situation. 
Co-workers can provide support many times because you spend more time with them than you do your family. You have time to talk to them about things that you don’t have time to discuss with your family or friends. 
Health Support Groups (or any support groups) can be a really great source of support because you are with a group of people who are in similar situations as you. If you can find local groups this is the best because they are people you can hang out and talk to in person. But online support groups can’t be just as effective. I myself have made some of my best friends in online support groups with people I haven’t and may never meet. They get me and my situation and I can talk to them about anything with any repercussions. (Here is a shameless plug if you are looking for a support group for autoimmune issues on Facebook. I along with a few other admins run Lupie Groupies. If you want to join we are a closed group and you will to request membership. If yuh can’t find it comment below and I will help you) 
Once you have that support system in place it’s important that you make sure the people on the other end understand how much you appreciate their love and understanding! Make sure that you do your best to stay in touch with them even when that’s the last thing you want to do. If you don’t do your part to keep the friendship or relationship open you can’t expect the other people to do the same. 
Support is essential really for all people. But especially for those with chronic illness. 
-Amber 

Resources 

-https://socialwork.buffalo.edu/resources/self-care-starter-kit/additional-self-care-resources/developing-your-support-system.html

Stress??? I’m Not Stressed……

Stress is a state of mental or emotional strain or tension, resulting from adverse or very demanding circumstances…… So now we know the official definition of stress, what is stress for you? What causes you stress?  Is it work, family, your health, financial issues?  How does stress impact you physically? Do you stress-eat? Does it cause you to flare? Does it cause migraines, nausea, vomiting? How does it impact you emotionally? Do you cry, or scream? Do you become withdrawn and deal with everything internal??

Each and every person is impacted by stress in a different way. Some internalize the stress and cause them to get sick or flare. Others make it know outwardly by crying, or yelling. But what can we do to change the way impact stress has on us? How can we change the way we react to stress?  Let’s find out.

Everyone is susceptible to stress. That being said people with chronic illness are probably at a higher risk of living with stress. Simply due to your illness and the things you deal with due to your illness. The everyday stressors that any person faces may be multiplied ten-fold for those dealing with a chronic illness.  On top of the everyday stress living with a chronic illness you may have to deal with:

  • cope with the pain or discomfort from your symptoms
  • take steps to manage your condition and to do self-care
  • adjust to the new limitations that are caused by your (possibly) new illness
  • deal with increased financial pressure
  • cope with feelings of isolation or frustration

A person living with a chronic illness can take steps to minimize the stress and challenges they are living under by taking steps to maximize your quality of life. A person can do this by following some of the following recommendations.

Understand your condition- When you are diagnosed with a new illness one of the best things you can do for yourself to help reduce stress is to learn about your condition. Do all the research you can, (from medical websites not just Dr. Google) to learn about what you are looking at and what may be happening to your body. Knowledge is power. The more you know the better position you are in. Learn to observe your body as well. Pay close attention to what makes your symptoms better or worse. And its not a bad idea to journal about what makes your symptoms better or worse, so you have a record and you can use the information to help yourself and have them to share with your care team.

Become a Self-Manager- When you start acting as a day-to-day manager of your own health it may help you gain a sense of control thus improving your quality of life. Also making sure that you follow the recommended treatment plan may help keep your symptoms in check. It might be helpful to you to set up a daily reminder, an alarm, or an alert on your smartphone to help you remember to take your daily medicines. There are also several Apps for smart phones that can help you remember your meds on time.  Other daily decisions that can affect your lifestyle can shape how you effectively deal with stress. Examples of these things can be: eating a healthy diet and getting enough exercise could help to boost your move, improve your mobility, and possibly ease symptoms. Its also important that you take steps to manage your relationships and emotions.

Managing Emotions- The fact that a chronic illness can affect your entire self and can possibly disrupt your life and plans. The following are normal responses:

  • stress
  • grief
  • rage
  • fear
  • depression
  • anxiety

In order to manage these emotions try to experiment with different ways to manage stress and emotions. When you find a technique that works make sure that you take steps to incorporate into your normal routine. Some ideas to do this are below.

  • exercising
  • stretching
  • listen to music
  • practice deep breathing and meditation
  • try journaling
  • cooking
  • reading
  • spending quality time with supportive family and friends
  • Schedule a time in your day to practice these techniques so you don’t get overwhelmed by the day.

Another way to deal with stress is to look at your habits and identify habits and behaviors that adds to stress.  It is very easy to identify sources of stress after a major life event. But identifying your everyday stress is a lot harder. It is very easy to overlook thoughts you are having, your feelings and your behaviors. To help identify sources of stress you need to look closely at your life, attitude and excuses:

  • Do you always explain away stress as temporary, even though you can not remember the last time you took a breather?
  • Do you define stress as an integral part of your work or home life or even as a part of your personality?
  • Do you blame your stress on other people or outside events, or view it as entirely normal and unexceptional?

Until you are able to accept responsibility for your role in the stress you are feeling, you will not be able to maintain a stress-less life.

You also need to replace unhealthy coping strategies with healthy ones, and examine the ways you cope with stress in your life. A stress journal can help identify the ways you cope. And help you determine if your coping strategies healthy or unhealthy, helpful or unproductive?

Here is a list of unhealthy ways of coping with stress:

  • Smoking
  • Using pills or drugs to relax
  • Drinking too much
  • Withdrawing from friends, family and activities
  • Bingeing on junk or comfort food
  • Procrastinating
  • Zoning out for hours looking at your phone
  • Filling up every minute of the day to avoid facing your problems
  • Sleeping too much
  • Taking out your stress on others.

If you identify that you use mostly the above ways to cope with stress it is time to find some healthier ways  coping.  One way to do this is to get moving.  Moving can be just about anything. Dancing around the house,  taking the dog for a walk, use the stairs instead of the elevator, park further away from the shopping center than usual or link up with a friend and engage in a regular workout.

Another great way to help cope with stress is to connect with others. Reaching out and building relationships. That being said meeting up with other people is probably the quickest and most efficient way to rein in stress and avoid overreacting to internal or external stress. Telling others what you are going through can be very cathartic, even if there is really nothing you can do to alter the situation. In the brain the inner ear, heart, face and stomach are all wired together. So when you interact with another person face-to-face, making eye contact and really listening can help to calm you down. And slow down the fight-or-flight response. It can also release hormones to reduce stress. Even if the interaction can change the stressful situation itself.

Lastly you should practice the FOUR A’s. Even though stress is an automatic response from your nervous system, some stressors will always come up at predictable time. For instance- your commute to work, family gatherings, doctors appointments etc. When these pop up you can either change the situation or change your reaction. It will be helpful to think of the FOUR A’s in these situations.

AVOID– It is not healthy to avoid a stressful situation that needs to be addressed.

  • Learn to SAY NO- know your limits and stick to them. Whether it is in your profession or your personal life, taking on more than you think you can handle is a definite way to bring on undue dress. Find a way to distinguish between the “shoulds,” “musts” and things you can say NO to.
  • Avoid people who stress you out.
  • Take control of your environment. If there are certain things in your environment that make you stressed eliminate them. Example, the drive to work stresses you our. find a new less traveled way to work.

ALTER THE SITUATION- If you can not avoid a stressful situation, find a way to alter it. Many times, this will involve you changing the way you communicate and operate in your day to day life.

  • Express your feelings instead of holding them in. If something or someone is bothering you find a way to be more assertive and communicate your concerns.
  • Be willing to compromise- if you are going to ask someone to change some of their behavior you need to be willing to do the same.
  • Manage your time better- Poor time management can be very stressful for some
  • Be more assertive- Stand up for yourself and don’t take the backseat in your life.

ADAPT TO THE STRESSOR

  • Reframe problems- Try to look at a stressful situation from a more positive viewpoint. For example: If you are fuming about traffic, look at is a time to pause and regroup, listen to your favorite radio station, or use it as a time of prayer.
  • Look at the big picture- Look at the situation and determine how important it is in the long run. Will it matter in a month or year? It is really something that is getting upset about?
  • Adjust your standards- Being perfect is a major source of avoidable stress. So stop setting yourself up for failure by demanding that you be perfect.

ACCEPT THE THINGS YOU CAN NOT CHANGE

  • Some stress will always be unavoidable. You can’t change the situation or prevent certain stressors. Acceptance may be difficult, but will be beneficial in the long run.
  • Don’t try to control the uncontrollable
  • Look for the upside- When you are facing major challenges try to look at that situation as an opportunity for personal growth.
  • Learn to forgive
  • Practice gratitude.

I hope that by reading this blog on stress you can use some of the recommended ways to help you deal with stress. I encourage you to try at least one of the above recommendations to deal with your stress.

-Amber

Resources:

  • https://www.helpguide.org/articles/stress/stress-management.htm
  • http://www.healthline.com/health/depression/chronic-illness