Depression, My Story. By Kayla Aiken

Depression has many faces, and can look many different ways! It’s not always the person that we picture in our minds, or saw on TV. Someone who is so down that they can’t get out of bed or complete their daily tasks. It can look like your best friend who is working and going to school full time and has become very good at hiding her secrets.

This year through a mutual friend I was lucky enough to be introduced to Kayla. I’m really just getting to know her. That being said since the first time we interacted she has always been very open about her battle with depression. Since she is so open and willing to share I asked if she would be willing to tell her story here! Thankfully she agreed. Below is Kayla Aiken’s story, her story of how depression impacts her life.

When I woke up today, I found myself on the couch barely able to open my eyes. I reached for my phone to see what time it was. 10:07 AM. At this point, I had slept 23 hours since the morning before, and I went back to sleep an additional four hours before waking up to even eat something. This is a very minimal depiction of what depression looks like. My doctor calls it “leaden paralysis”, a symptom of Major Depressive Disorder, Atypical in subtype. It’s where your entire body feels like lead. Your arms are so heavy it feels as though you can’t lift them. Your legs are leaden and making it up stairs is a struggle. This is mental illness. My diagnoses include the previously mentioned MDD, severe, recurrent, and atypical, PTSD, Generalized Anxiety Disorder, and an Eating Disorder.

My story starts here: I graduated nursing school in May of 2010. After four years of nursing in the same location, I decided to become a travel nurse. I traveled in Oklahoma, Connecticut, and Missouri. I was in Connecticut in 2015 and started to feel sort of “blues-ish”. I thought it was just because of the weather. So, I came home to Missouri in March and by the Fall of 2015 I was a worried, depressed, and anxious mess. I couldn’t take my dog outside without my gun on my side or maise in my hand. I packed food and put it in the trunk for my drives back and forth to work just in case we got hit with a nuclear bomb or an EMP…etc. My hands would shake uncontrollably at times and I couldn’t eat anything. I went on a cruise in October of 2015, but I didn’t even enjoy it to it’s fullest because I was so concerned that the ship was going to sink or we were going to get stranded on some island we visited. My anxiety was out of control.

In January of 2016, I saw my doctor for the anxiety. He asked me if I was depressed, also, but I denied it being an issue. But, it was. It was a major issue. I called in a couple of weeks and said, “Oh, I think I am struggling with depression, too, so if I could get something for that…” He prescribed Prozac, but it put me to sleep for a week; so, we made the switch to Effexor. Between the medication for anxiety and the Effexor, I started to feel a little more normal again around the March/April months of 2016.

By the fall of 2016, I started to feel as though the Effexor was no longer working. I was driving back and forth to work envisioning myself driving off the road into a ravine, or seeing myself take my gun in my hand and put it to my head or my heart, or taking all the pills in my medicine cabinet. I was so mentally ill. So, so ill. I was losing friendships, my family relationships were strained, and I was calling off work more frequently than I could afford. I was faking fine so well, that only my closest friend really recognized how mentally ill I was.

I think it was in November of 2016 that we found out my Dad had been having an affair. And then my extended family and I had a big blowout over Christmas 2016. Two major stressors in a short amount of time.

In January of 2017, I went back to my physician and brought my best friend along to help me stay honest. I told him, very fearfully, that I was having suicidal ideations and that my depression was out of hand. He changed my medications up a little bit, and sent me on my way. The medications did not work. In February, I found out that my two younger sisters had been sexually assaulted by an older boy cousin. It infuriated me. It destroyed me. And, I had no idea what I could do about it; because my sisters are adults now and will deal with it the way that they want to. But, if it was up to me, I would have him and everyone else who was involved put on trial for such a heinous crime.

March of 2017 rolled around and I flew to San Diego for a conference, still so very sick, and losing hope by the minute. I was driving home from St. Louis from the conference, and tears rolled down my face until my eyes were nearly swollen shut and physically ached. What was I going to do? I couldn’t live like this.

A few weeks later, on April 3rd, I delivered my 14th baby during my midwife clinical. I drove home later, took a shower, and curled my hair. I was going to dress and do my makeup despite feeling so depressed. I went to a 12-step meeting, and when I got in my car I just had this feeling of “I cannot do this”. I called a friend, and she was cooking dinner, so I let her go. I went home, I played piano, I journaled, I watched TV, and nothing was working.

So, the evening of April 3rd, 2017, I took approximately 140mg of Ambien. My standard dose was 5mg nightly. I won’t go into the events of that evening, because it is just a lot. But, I woke up the next day in the local ER to find out I was going to be admitted to the hospital psychiatric unit for a week. It was one of the hardest weeks of my life.

In 2017, I was admitted to hospital psychiatric units four separate times. I spent 3 months in a residential facility in Chicago getting treatment for my depression and other mental illness diagnoses. I met a ton of wonderful people there. People who were also ill, but wanted to get help so much that they stopped their lives to go into a long term inpatient facility to work on their shit. It was liberating, and oh so hard. But, I’m thankful I had the opportunity to do it.

So, where am I now? Still in treatment. Still working on my shit every day. Still focused on getting up out of bed and making myself do things like laundry and dishes and putting gas in my car and getting groceries so I can eat. It’s not easy. Every day is hard. But, every day is a gift. I am trying to see that for the truth that it is.

I feel like all of the above was probably very boring to read, so if you made it this far, thank you! I’d like to take a moment in closing to talk about mental health stigma. I looked like I had it all together. I had recently graduated with my Bachelors in Nursing. I was pursuing my Masters in Midwifery from a prestigious university. I was working full time. I was going to church, maintaining friendships, and seeing my niece and nephew as often as possible. But, inside I was being eaten alive by my demons. Many people who struggle with mental illness do not look like they do. Still to this day, when people find out I struggle with depression, they are shocked. “But you are so personable and bubbly.” they say. I would encourage you to get in deep with those that you are surrounded with on a daily basis. Your family, peers, and coworkers…etc. Ask them how they REALLY are. Ask them about anxiety or depression and whether they have ever struggled with it. Be honest about your own struggle with anxiety and depression with someone who is safe in your life. Find someone safe for yourself, and be someone safe for others. When I attempted suicide in April and July of 2017, it was my closest best friends who intervened and saved my life.

Thank you for reading, and if my story resonates with you and you’d like to reach out, I’ll leave my contact info below. Feel free to reach out if needed.

Kayla Aiken

kaylaaiken@icloud.com

If you are having suicidal feelings or thinking of ways you could end your life, PLEASE reach out to someone you can trust! There is help out there for you!!!

As always with Love,

Amber

The Negative Direction In Which National Healthcare and Insurance is Headed

I am going to apologize for what I am going to say. I have no intention of being offensive but this could potentially be offensive when read by some people. These are my opinions, & written by me. And I’m sorry if I offend anyone as that was not my intention.

Let’s discuss Insurance Companies for a moment. Every year the price we consumers pay seems to go up and up, in a way that many can no longer afford. How is this right?!??? I don’t have a problem paying for my Healthcare, because I was raised to always budget money every week, month, year to cover said insurance. But we are now coming to a point that the cost is becoming astronomical. Due to this people are being put more and more at risk for ending up in life altering debt, Due to the fact that they couldn’t get insurance at an affordable price point, but still needed medical care!!

Why should this be an option? When did it become okay for women, children & the elderly to not have medical coverage?!?! Pregnant women, young children and the elderly are typically the populations that need to be able to get affordable insurance. However, that is simply not always happening. Several years back a law went into affect saying that all had to have insurance or they would owe more on their taxes. Now those with low income have the option to turn down said coverage and get a letter from the government saying they will not be taxed because they applied for insurance but were unable to pay the monthly premiums. How backwards is this.

This month alone I have had two procedures and a Doctors appt for Botox for my migraines denied! Apparently this wonderful insurance co I have had decided that they will okay God. They will make decisions for others care while not taking the time see the whole picture. “Oh it says her lungs have likely become involved due to her lupus, since her doctor has done X-rays why would a CT be needed. Oh look at this back X-ray report that said further testing is needed to confirm diagnosis. Nope, she doesn’t need that either we will just start PT sand hope that her pain that she’s dealt with will just disappear!” The patient and old RN feels like she is going crazy.

The RN in me somewhat understands. I get that they want to save people from having totally unnecessary testing and procedures & costs. If they were being honorable to decrease costs for said patient I could stand behind that.

What I can’t stand behind is these big insurance companies who decide to play GOD. There is only some GOD and I’m pretty sure he’s not in the insurance business. They didn’t ask my drs any further questions to help them the decide if other mode of treatment or diagnosis is possible. They just said NO!!! This insurance issue is getting much to out of control for people with chronic illnesses. We are always going to require more medication, more testing and more procedures. It’s just the name of the game. I don’t feel like these big corporations want to take time to figure out what is better for the patient. They just care about what is best for their companies pocketbook!!

In closing, I am super uneasy at the this way healthcare in the United States is going! I like the way it is as headed a few year by requiring affordable for all US citizens. The key word there is AFFORDABLE!! Now in my opinion, Healthcare is heading in a really negative direction. Those of us who have to have insurance should not have to sell my first born, my right kidney, and my great toe to get affordable healthcare. I sure someone in the government has a great idea on how to fix the issue!! Until then, we continue to pay unacceptable premiums.

With Love,

Amber

Why Is Sleep So Important?!?

Sleep…. sleep…..sleep. It’s all my doctors seem to want to talk about these days. I can count on every doctor I see to ask me how I’m sleeping. When I tell them the truth I always get THAT LOOK! A look I’m sure anyone with a chronic illness/pain is used to seeing. Then they proceed to tell me why I need to sleep more. That being said I’ve always wondered how much of a difference sleep really makes. And why it is so much more important for us (the chronically ill and those with chronic pain) than other people. So I decided I would do some research and pass on what I found to you guys!!

The 2015 Sleep in America Poll found that 21% of Americans deal with chronic pain, along with 36% who suffered, in a period recent to the time of survey, from acute pain. That shows that only 43% of the population report being pain free. Pain joins with stress and poor health in general equals poor sleep, shorter duration of sleep and poor sleep quality! The people who suffer from either acute or chronic pain are more likely to have problems sleeping that will impact their daily lives. More than half of the people with chronic pain and were part of the poll say that sleep difficulties have or will interfere with their work. That. Number drops under 25% for those who have no pain. Those with pain also report that lack of sleep often Interferes with their mood, the activities they may take part in, relationships and overall enjoyment of life.

People with chronic pain also feel that they have less control of their sleep, the report that worry more about lack of sleep could affect their health. This group of people also say that they are more likely to have their sleep impacted by environmental factors that make it more difficult to get a good night sleep. These could be things like noise, light, temperature, mattress or even the person who they share the bedroom with. Just to give you an idea the survey indicates that sleep is a significant problem for those with chronic pain. The statistics don’t lie. It showed that almost one in four people with chronic pain (23%) said that they have been diagnosed with some kind of sleep disorder by a dr. That is compared to just six percent of those who don’t have any issues with pain.

These statistics above show what we all know. They show that those with chronic pain issues don’t sleep well. But why is it so important?!? Some doctors feel that the duration and quality of sleep should be considered a vital sign, because both are known to be strong indicators of qualify of life and overall Health. It is recommended that a person gets 7-9 hours of sleep a night. The importance of good sleep should never be underestimated. Sleep deprivation has been clearly linked to increased rates of obesity and increased body fat. Along with a compromise immune system, and even diabetes. Research shows that a full nights sleep (7-9 hours) is essential to help the body repair and rejuvenate. Lack of sleep has been linked to poor performance on the job and very slowed reflexes behind the wheel. A non-restorative sleep pattern can potentially cause diminished energy, depressed moods, fatigue and along with experiencing more pain. That being said new research is showing that getting a full night of sleep can not only help you be more alert and it can also reduce inflammation and pain. Basically the takeaway from this is that sleep deprivation and poor sleep along with chronic pain are part of a vicious cycle, that can be hard to break.

The good news they say, is that sleep deficits can be remedied easily and the effects of lack asleep can be reversed. There are specific ways to improve your sleep hygiene that can give you immediate rewards. The American Sleep Association there are some steps that one can take to make sure that you can get better sleep. These steps are done to help you wake up feeling refreshed and energized for your day!

The following are steps recommended by the American Sleep Association(ASA):

  1. Keep the room cool- In General when we sleep our body temperature drops. So it is recommended that you keep your bedroom around 65 degrees. That is so you can add blankets. The drop in body temp signals your body that is time to sleep!
  2. Go to bed earlier- Just like kiddos, adults can get over tired and won’t be able to fall asleep. Also for those who like to stay up late and sleep fewer hours research has shown that those who keep that as part of their routine oftentimes report more negative thoughts and more pain.
  3. Stay on Schedule- In order to help your body get used to sleep, try to go to bed and get up at the same time. By doing this your body will get used to this rhythm. This making sleep somewhat easier.
  4. No Naps- This is a very debated topic. That being said the ASA says that nap decrease the “sleep debt” that makes it harder to fall asleep at night. So by napping during the day you increase the odds that you will have trouble falling asleep and/or staying asleep!
  5. Turn off screens- Turning off all kinds of sleep a couple hours before bedtime for all ages allows the body and brain to settle down and shift into sleep mode.
  6. Make the bedroom only for sleep and intimacy- In today’s society the bedroom have become multifunctional. It is no longer just for sleep, it is used by some as their office, or a place to workout or a movie theater of sorts. By making your bedroom uni-functional it will make it easier to sleep there. It’s hard to relax and go to sleep when you can see your desk piled high with tasks that need to be completed. By making the bed and bedroom just for sleep one can hope that your brain will subconsciously associate being in the bed or bedroom with being asleep. They also say that one shouldn’t lay in bed and surf their phones, watch TV or even read. They suggest sitting in a chair in the bedroom to do those tasks and crawl into bed only when you are feeling sleepy.
  7. No caffeine or other stimulants after noon – in order to get better sleep it’s best to avoid any caffeinated beverages, cigarettes and alcohol after noon. By doing so it is hoped that your body & mind will be able to wind down and sleep when it’s time for bed.

Let me be real and honestly say I don’t think that this is something easily changed or reversed. As someone who has suffered with insomnia for many years and have made many of these changes through the years. And I just don’t see the great change in my sleep by doing so. That being said these tips may benefit one of you reading this greatly. So I feel like even if it hasn’t helped me I want to share this information with others in hope that it can help someone else. By doing this research I was able to see the dangers that can come from not sleeping. This the importance of getting a good nights sleep every night. So I am willing to make these changes once again and see if it is beneficial to me. I will try the tips listed above for a month or so and report back to you all as to whether or not they have improved my sleep!

Finally take a moment to look at the graphic below. It shows some Interesting information on this topic. Graphic is from the National Sleep Foundation.

With Love,

Amber

Resources

https://www.spine-health.com/wellness/sleep/chronic-pain-and-insomnia-breaking-cycle

Better Sleep Guide

https://www.sleepassociation.org/sleep-disorders-n/insomnia/amp/

Explaining Fibromyalgia in Six Quick Points

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

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

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

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

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

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

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

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

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

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

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

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

With Love,

Amber

Why Does Weather Make The Pain Worse?

Okay I know I can’t be the only one who’s pain and comfort is impacted by the ever changing weather! And this winter/spring has been the WORST!! In the last two weeks it seems like my pain has been almost constant. I think it’s partially due to the fact that we’ve had 70-80 degree days with thunderstorms that turned into a 30-40 degree day with winter weathe !! Mother Nature sure has been a little confused as of late. I have never totally understood why the weather has such an impact on people with any kind of chronic pain. So I decided I would do a little research and share the information I’ve found!

Weather.com explained it like this, they say that the changes in barometric pressure are what causes the fluctuations in pain for everyone with arthritis, lupus, rheumatoid arthritis & fibromyalgia. Really, anyone who has chronic pain or migraines. It is said that any change in barometric pressure or change in the weight of the air that presses against the surface of the earth can cause headaches and increase joint pain. There have been studies done and published that show that two thirds of people with chronic pain in all parts of the US believes that there is a link in weather changes and increased joint pain and migraines. A study done with 800 Europeans with osteoarthritis found that 67% report that they feel that weather affects their pain!

Like those with chronic pain, migraine sufferers also report that their migraines are linked to weather patterns. It is believed that barometric pressure changes, along with changes in humidity and temperatures could potentially affect the pressure in the brain. Dr Steven Graff-Radford the director of a program for headaches at Cedar-Sinai states “Though the mechanism is somewhat unclear, what is quite clear is that overcast, cloudy and rainy days produce more migraines.” Mayo Clinic says that for some people changes in weather may cause imbalances in chemicals in the brain, including serotonin, which can potentially cause migraines. Allergies are also a big cause of headaches (migraines) this time of year. It’s getting warmer and all the things are blooming. If you have problems with allergies that lead to headache you need to be proactive. By taking antihistamines to help keep the allergies at a minimum. (Of course check with your doctor before taking any over the counter allergie medicines.)

One thing that everyone is sure of is that cold weather makes pain worse. Research has proven that when you are cold, your muscles, tendons, and ligaments tighten and become less flexible. One way to help reduce the pain due to cold weather is to stretch. Stretching will help to loosen those muscles, tendons and ligaments and help to make your body not so stiff and make it easier to move around. Even in days when you don’t feel like being active, doing some sort of exercise is important. Inactivity can actually increase some types of pain.

After doing my research the main things I found is that there is a real link between weather changes and increased pain levels and migraines. It’s great to know that it’s not just me that experiences that! I know that I am not. But sometimes it feels like you are the only one dealing with an issue. The best thing we can do to deal with the increased joint pain is to try and stay active. I know that’s much easier said then done. But especially this time of year when the weather is all over the place, staying active will help to keep you from getting stiff and having more pain. In reality all we can do is hope that Mother Nature settles down and the weather will become more stable.

The Spoon Theory, How Spoonies Get Through a Day

When you are sick and really feeling terrible, there is nothing that can be more irritating than when someone says to you, “At least you don’t loo sick!” While they may not mean this as anything but a compliment. In general it is NOT how most with an invisible (chronic) illness will take it. To hear you don’t look sick when you have an illness where your body is attacking itself on the inside but can’t be seen on the outside is very very frustrating. So much so that fellow Spoonie Christine Miserandino developed a way to explain how we are feeling. Her piece is called The Spoon Theory. If you aren’t familiar with this theory you need to be.

Christine decided that she needed to find a way to explain how well or poorly she was feeling to her best friend and roommate. Her roommate was the person who went to doctors appts with her, saw her sick and saw her cry. She stated that if she couldn’t effectively explain it to this person, how could she explain it to anyone. She thought about it for awhile and decided using spoons would make the most sense. And at this point The Spoon Theory was born. And stated, “At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.”

Christine went on to explain that the difference between a healthy person and someone with a unhealthy person is that someone with a chronic illness has to make a choice and choose what they do or don’t do every day! When a normal healthy person does not have to make that choice.

“Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.”

Christine goes on to talk about how at the beginning of the day the chronically ill start with X amount of spoons and that’s how many you get. No more, no less. And through the day EVERY SINGLE ACTIVITY that you do costs you X amount of spoon. That’s everything, including getting dressed, taking a shower, putting on makeup etc. All activities that most would be thinking that are simple and easy things that shouldn’t be a problem. However, activities like that are the ones most people will take for granted and do without a second thought. That being said, those who have a chronic illness may have to forgo those activities, or others, like drying their hair and putting on makeup (simple as they may seem). Those things may definitely be skipped if there is an activity later in the day that they know will take more spoons and they really want to take part in or attend. Even if we may be able to do those simple tasks like those what were mentioned above it make take use 5 times as long as it used to. Simply because we don’t have the energy to get them all done at once like we once did and may require frequent breaks through the getting ready process so that we don’t risk exhaustion before whatever it is we are doing! Those of us with chronic illness have to do what we can to conserve spoons so we can make it through the day.

Let me give you an idea of what a work day looked like for me before and after my Lupus diagnosis.When I was working as an RN, right out of school before I was my first life changing diagnosis, my mornings were very different then they are now! 7-10 years ago every morning I would get up and get dressed, do the normal tasks like deodorant and brushing my teeth as well as doing my hair, which could consist of being in a pony tail/bun or down and curling it! I would put on my makeup almost every day and eat breakfast at home before leaving. I would always leave for work with enough time that I could ensure that I would arrive on the nursing floor a full 30 minutes before I started my shift so I could fully prepare for my day. I would work a full 12.5 hour shift, most of which I was on my feet and going, going, going for the whole shift. I would sit very little usually only to chart and long enough to eat a quick lunch maybe 15 minutes, if I was lucky. At the end of my day I would arrive in the room where we gave report, right on time because I was usually busy until it was time to give report and leave. Once I left work, I would often go out to dinner or even out to the bar for a fun night out after work. I could easily survive on 5-6 hours of sleep and do okay. During part of that time I was also in school for my bachelors degree, so I also had to work on studying, writing papers and going to classes online and on the computer, as well as spending time in lab or clinical.

The previous scenario is so different then what it’s like now (most recently). When I was working as a hospice nurse in the field last year, I would wake up maybe 20 minutes before I had to leave, if I was lucky! Leaving just enough time to drink a yogurt shake or maybe something as i was driving, jump in some clothes, put on deodorant and perfume and brush my teeth. (Much different than the way I did before) Most days I would work anywhere from 4-8 hours a day depending on what my day was like, and how far i had to drive. By the time I got home I was in so much pain and so stiff I could hardly get out of my car and walk into my house. And most days I would shower and fall into bed. Even if i has only worked 4 hours. And this is where I would stay until the next day. I wouldn’t sleep that whole time most days, but I didn’t have energy to do anything else. And my spoons were totally and completely gone. There was no more meeting with friends for dinner after work or going out for drinks on a work night. And most nights I require no less then 8 hours of sleep, more likely 10-12 hours. And many times on my days off I would spend resting because I was tired from the day before and knew I need to rest up for the next work day.

When I came across Christine’s Spoon Theory, I found it to be the perfect way to explain my days and how I pick and choose what I do and don’t do. Over the last 6 years I have used this very theory many many times to explain what is going on with me and why I may cancel plans from time to time. When anyone new comes into my life I often times will send this to them so they can get a bit of an idea of what I have to deal with on a daily basis. And I suggest that all of you do the same. This works for all chronic issues. Not just Lupus and Fibromyalgia. It can be used to explain the energy conservation requirement of any condition that causes chronic pain and chronic illness. So since I could not show you Christine’s complete theory, I want to provide the link for you. The Spoon Theory in its entirety can be found by clicking that link. I recommend all of you read it even if you have read it before. I also recommend that you keep the link so you can send the theory to any friends or family who you feel needs a better understanding of what you deal with all day every day. I also hope that those who you share this with will have a little bit better understanding. And will maybe refrain from using those awful 5 words we all hate so much to hear, “But you don’t look sick!” If you are a friend or family member of someone with a chronic illness please take time and read Christine’s whole piece. It would honestly mean so much to the person in your life who is a Spoonie!!

Please share this post with anyone you might know who is dealing with a chronic illness either as the chronically ill, or as family or friend of the chronically ill, and you feel that they could benefit from it!

With Love,

Amber

I also want to send a shout out to Christine Miserandino for allowing me to quote her writing in this post!

Reference:https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Exercising with Chronic Illness

Exercise is not something I have talked a lot about in previous posts. Because it’s not something I have been doing. And it’s not something I enjoy, or to be honest know that much about. But honestly it’s time! The cardiologist cleared my heart and we are looking at my lungs. But recently a doctor that I love and respect very much reminded me that the shortness of breath and high heart rate I have been experiencing could be something as simple as deconditioning. So it’s time for me to get back to exercising. And to make getting fit a priority. As I started researching how I should get back into the fitness world I thought others could use the information as well. So today I wanted to share a bit of information on what kind of exercise is good for those with chronic illness/pain and joint issues.

Before we get into any suggestions about exercise I wanted to remind you about a few things.

  • Before beginning any exercise program you should ALWAYS contact your physician to get the okay.
  • You should always start with low impact and go slow! You can increase your impact and intensity slowly.
  • Always move at your own pace and never try to keep up with someone you are with or with a class.
  • Lastly if your pain level increases by more than 2 points from where it was at the start of the exercise you should stop &/or modify that specific exercise to try to ensure that you don’t cause a flare.

It is recommend that everyone do a combination of stretching exercises, strengthening exercises and cardiovascular exercises! Stretching will help to increase flexibility, loosen any tight or stiff muscles, as well as improve range of motion. Everyone should be doing some stretching EVERYDAY!! Strengthening will help to build up muscle strength. And cardiovascular exercise has a plethora of healing benefits. Now let’s look at what specific cardiovascular or aerobic exercises you could be doing.

1. Walking – is an excellent form of light aerobic exercise. It helps to bring oxygen and nutrients to your muscles, helps rebuild stamina, boosts energy, and will reduce stiffness and pain. Other options of low impact aerobic exercises would be riding a stationary bike or using an elliptical.

2. Yoga – Practice the most gentle kind of yoga you can, preferably the Hatha form of yoga. This kind of yoga is a combination of postures, breathing, and meditation that will reduce the physical and physiological symptoms of pain. A study that was published in the Journal of Pain states that participants reported significantly less pain when doing yoga. Yoga will also help to build endurance and energy while improving sleep and concentration.

3. Tai Chi – The benefits seen with tai chi are very similar to those seen in those who do yoga. Tai Chi is a very low impact kind of exercise where the participants slowly, gradually and gracefully preform a series of movements. Studies show that this form of exercise may even be better to relieve fibromyalgia pain than yoga!

4. Swimming & Water Aerobics – Any exercise in the water is good for people with chronic pain or joint issues. It is also an excellent alternative to walking for those with mobility issues. Being in the water provides a low-impact cardiovascular exercise that helps to keep you moving without putting added stress on joints and muscles.

The last point I want to make applies to all people. Not just those who are chronically ill. It is something I have struggled with love you whole life not just the last six years since I’ve been diagnosed. I don’t know about all of you but if I don’t have an accountability partner I am less likely to stay accountable and stay on track. If I have someone who is checking in on me a few times a week saying hey how is your diet, and how is your exercise routine going? I am more likely to actually stay on top of those things. So I strongly recommend finding someone in your life to be that person for you. So make sure you find someone to help you stay on track.

We took a brief look at some exercises that are good for those who have chronic pain or have joint issues. So maybe this will give you an idea of where you could start. I did not cover stretching directly because most people have a basic idea of how to stretch. I also didn’t cover strength training, because it can be very complicated and vary dramatically from one person to the next. However, there are articles for reference on both below. If you do plan on starting a new exercise plan please let me know what you plan on doing. I know for me having an accountability partner works best for me. If I don’t have someone to keep me accountable then I won’t stick to my plan as well as I do with that partner. So that is also something for you to keep in mind. If I can help you in any way please let me know. I would be very happy to help!!! I hope this helps some of you. Below are some articles for references on exercise with chronic illness for you.

With Love,

Amber

References:

https://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/exercise-and-chronic-disease/art-20046049

Expert Advice: How to Overcome Obstacles to Exercising with Chronic Illness

https://www.mayoclinic.org/diseases-conditions/arthritis/in-depth/arthritis/art-20047971

https://www.fmcpaware.org/exercise/strength-training-for-the-person-with-fibromyalgia.html

The Reason Behind the Blog.

January 2017 I was at an all time low. I had left the career that I loved so much as a nurse behind, to focus solely on me and my health. Something I’ve never been good at. Historically I always put myself behind others. Making sure everyone else has their needs met before my own. I don’t know why, but I do. At that point I needed something, something I could throw myself into. Something to focus my time on. So I started my personal journey to finding something I enjoyed and something that could make me feel happy again. I wasn’t sure what that would be but knew it was essential for me so I could crawl out of the deep hole I found myself in.

So a little over a year ago I started exploring my options of things I could really throw myself I to. And nothing was really catching my attention. I tried volunteering and that wasn’t a fit. So I came back to an idea I had been throwing around for quite some time. It seemed far fetched and I figured it would never amount to much. But I wanted to try it. I wanted to give BLOGGING a try. For many years I had said I was a “blogger,” but really all I was doing was journaling in an online forum. Yes, it was a good outlet. But I wanted more. I wanted my blogs to help others. I wanted to provide the world with Information, inspiration and truth! I wanted to be able to share my opinions on issues that really mattered to me and be heard. Even if it was only by three or four people, I wanted to try.

So I spent many days researching and looking at other blogs. And then many more days figuring out how to set my blog up. Finally after spending a couple of weeks working behind the scenes I put up my first blog. It didn’t go viral and wasn’t seen by thousands. Or even hundreds for that matter. But I enjoyed it. And I had a lot of ideas for topics I wanted to cover. So I just kept cranking out the content and praying that I would find a way to get my work seen by more. I felt like if my work could even help just one person then I had done my job!

My sole purpose when I started this blog was to spread information to others about conditions they may not have ever heard of. While also providing people, with the conditions I write about, more knowledge on their health. And also encouraging everyone to be their own advocate. I feel that knowledge is POWER! As patients the best thing we can do for ourself is to be educated on our bodies and our health. And to stand up for ourselves while acting as our own advocate. And I hoped that through my blog people will gain more knowledge and power.

Over the last year I have researched many topics that I knew a little about, but not enough. I have collaborated with several other great small businesses and have slowly grown my following. My blog gets on average about 300 visits a month. Which in the grand scheme is not huge, but I am happy with it. I am still working to grow my following so I can get information to more people all over the world. And always looking for new content to provide my readers. While doing all that is important, the most important thing that has come from starting the blog, is finding a passion. When I started writing I didn’t think this would amount to anything. But that’s far from the truth. In the process I have realized how much I love writing and getting knowledge into the hands of the people who need it most! The blog has given me something to pour myself in on days when I’m down about my current situation. As much as this site has been helpful to others, it’s been just as much help to me!!

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

A New Way to Look At Feb 14th…..Aka National Donor Day

Image result for organ donation free images

We all know February 14th to be Valentines Day, the day of love and the day to celebrate the ones we love.  But to many it is a day to celebrate something much different. February 14th is not only a day to show your loved ones how much you love them, it is also a day to talk about organ donation.  February 14th is National Organ Donor Day. Which for some is different way to share love. That being said, how much do you really know about organ donation? Is it something that you would do? This can be a somewhat controversial topic, because not all believe in Organ Donation. That being said today I am just going to provide you with information on Organ Donation and you can decide how you feel.

National Organ Donor Day is observed every year on February 14th, and is meant to be a day to increase awareness about organ donation as well as the number of lives that are saved by donation. National Donor Day was started in 1998 by the Saturn Corporation and the United Auto Workers partners, along with support of the U.S. Department of Health of Human Services and several nonprofit health organizations. Here is a statistic that honestly was a little shocking even to me. Did you know that right now in the United States alone there are 120,000 people waiting for a life saving organ? There is a focus on all types of donations on National Organ Donor Day. The focus is on donation of, organs, eye(s), tissue, blood, platelets, and marrow. The later are donated by living donors who participate in blood/marrow drives. It is also a day to recognize anyone we know who have been given the gift of donation, have received a donation or are currently waiting on an organ.

Here on some stats about Organ Donation (many that I was actually shocked by):

  • 33,611 transplants were performed in 2016.
  • 20 people die each day waiting for a transplant.
  • 95% of U.S. adults support organ donation but only 54% are actually signed up as donors.
  • Every 10 minutes another person is added to the waiting list.
  • Only 3 in 1,000 people die in a way that allows for organ donation.
  • Currently there are candidates for transplant on the U.S. national waiting list.
    • Nearly 2 out of every 3 people on the waiting list are over the age of 50.
    • Almost 2,000 children under 18 are on the waiting list.
    • Almost 70,000 people (58%) on the list are ethnic minorities

STATS FOR GRAPHIC ABOVE:Waiting List by (lowercase) Ethnicity (7/2017)Caucasian – 41.7%African American – 29.2%Hispanic – 19.5%Asian – 7.7%Other – 2.2%

STATS FOR GRAPHIC ABOVE:Organs People Are Waiting For (7/2017)Kidney – 82.9%Liver – 12.3%Heart – 3.4%Lung – 1.2%Other – 2.5%

  • In 2016, about 62% of organ recipients were male; 38% female.
  • More than 82,000 corneal transplants were performed in 2016.
  • More than 1 million tissue transplants are performed each year.

STATS FOR GRAPHIC ABOVE:Transplants Performed in 2016 by OrganKidney (singular) – 19,062Liver – 7,841Heart – 3,191Lung – 2,327Kidney/Pancreas – 798Pancreas – 215Intestine – 147Heart/Lung – 18

  •  In 2016 more than 4 out of 5 donations came from deceased donors, and 1 out of 5 donations from living donors

I am honestly shocked by the number of transplants that are done on a yearly basis. Even after working in the health care field for 12 years, I was not aware of the need or the number of organs that have been donated. I think one thing that is clear is that the number of people needing organs far outweighs the number of organs donated.  In my opinion most people do not donate simply because they aren’t aware of the needs and because they do not understand the process, not because they just don’t want to, or simply don’t believe in organ donation. That is just my opinion and what I have seen in the research.

There are several ways that a person can donate. First is organ donation after death. According to Organdonor.gov  there are more than 125 million people who have registered as organ donors, but only around 3 in 1,000 can actually become donors when they die. There a multitude of reason someone could not be eligible to donate. Some of those are certain kinds of infections, or conditions like cancer. If you want to be a donor after you die, it is essential that you make your family aware of this decision and make sure it is your Living Will.  If there is no legal documentation that you chose to donate then it will be left up to your spouse or family to make the decision at the time of death. You should also be registered to donate and I will talk about how you can register to donate at the end of this blog.

Another way to donate is to be a living donor. The majority of organ and tissue donations occur after death. That being said there are organs that can be donated while living, these organs would be kidneys, as well as part of a liver or lung. Unlike when you die when your organs go to whoever is most needing that organ. When you do a living donation you can elect to give your organ to someone, as long as you are a match (which I wont be talking about in this blog). Many living donors donate to family or friends so they can have more quality of life. Surprisingly, there are just about as many living donors every year as there are deceased donors.

Do you want to register to be a donor but don’t know how? The easiest way you register through the DMV when you get a drivers license. You should also check the box and sign the back of your license to show that you want to donate. Another way you can donate is to go to the Organ Donor Registry and register through that website. It also never hurts to carry an organ donor card in your wallet. And like I discussed before,  you need to talk to your loved ones to make them aware of your choice to donate your organs so they can follow through with your wishes. Image result for organ donation free images

I am aware that organ donation is not for everyone. But I wanted to give everyone information on the topic. This is a very personal choice and not everyone will chose to donate. That being said, the more we are educated on what organ donation is and how it can benefit others, the better we can feel about the decision we make for our self and our loved ones.

I hope everyone has a great Valentines Day and will spend some time looking into organ donation.

With Love,

Amber

 

References:

https://www.organdonor.gov/statistics-stories/statistics.html

https://organdonor.gov/about/process.html

Celebrations

https://www.organdonor.gov/register.html