The CDC just released its new guidelines to help doctors understand the looser guidelines so that patients may have some relief from the forced tapers or forced termination of medications. This has resulted in diminished quality of life, driving some into using illicit narcotics, or sadly driving some to suicide since there has been no relief.Read More
Dear Medical Professional,
I know, it’s so easy to see a diagnosis or a medication in a chart and form judgment on someone before you ever meet them. I’ve been there, I’ve done that. I would be lying if I said I hadn’t. That being said now that I am on the other side of the bed I ask that you hold that judgement until you meet me. We aren’t all alike, just like you aren’t like your sibling or your cousin with the same last name who no one speaks of. All chronic illness patients are different. We may have the same diagnosis and take the same medications but that’s often where the similarities stop.
Sadly over the last few years I have spent many nights in the hospital. I even took a week long trip to Mayo Clinic In Minnesota, and have had a couple overnight trips for treatment. Thankfully, it’s been awhile and I hope I don’t jinx myself by sharing all of this. That being said I was cleaning out my bag and thought I would share.Read More
Welcome to this weeks Spoonie Spotlight. A new series where writers with different chronic conditions will be featured. Along with a brief discussion of what their condition is and what some generic signs and symptoms are for their condition.
This weeks post will highlight: ENDOMETRIOSISRead More
Hello world! This one is for YOU!! No matter what we do or how hard we try to change things there will always be some level of judgement in the world. Especially in this time where it seems like everyone is shaming others for something. That being said most of us do our best to keep that judgement to ourselves, and don't stare people down. We have the kindness not to make comments when we think someone shouldn't be using a wheelchair, or parking in a handicapped spot or even just wearing a mask out in public. Sadly, there are those people who can’t seem to keep their thoughts and judgments to them self. This letter is for those who can’t keep their comments to themselves or feel the need to stare others down.Read More
Today, I stumbled upon a video from a mom who has a son who is on the autism spectrum, and has been for many years. She was talking about an email she had recently received from a mom who was in the thick of a new diagnosis. Her child was recently diagnosed and the mom was struggling, as most people do when they receive the diagnosis of a chronic condition. She asked the seasoned mom if it gets better. She wanted to know if life gets easier at some point. As I watched this woman explain her answer it made me think about how I would answer this question if I was asked. What would I say to someone who was newly diagnosed as someone who has lived with a chronic illness for seven years?Read More
Living with a chronic Illness can be hard, plain and simple. Living with an invisible illness, one that causes chronic pain, is harder. It has become such a common practice for people to quickly judge another person based on their condition or based on their use of narcotic pain meds. It has even become true within our healthcare system and within the government. Sadly it is not uncommon for a patient to be looked upon as an “addict” simply because of a medication that they take. Much of this has happened in response to the media coverage of the Opioid Crisis and how the government is handling the crisis.Read More
Living with a chronic invisible illness is HARD! When you live with a condition that can’t be seen you have to deal with so much. Not only because the daily suffering isn’t easily explained to others, but because every where you go someone seems to be judging you. People always assume that just because you don’t appear disabled that you are just lazyRead More
Domestic Violence is not a topic to ignore as it is an ever growing problem. A problem that is being focused on this month as the month of October is Domestic Violence Awareness Month. I would imagine, based on statistics, that each of you reading has been impacted by domestic violence in some way, if not you directly, than someone you know has. I say this because the National Coalition Against Domestic Violence says that 1 in 3 women and 1 in 4 men have been victims of [some form of] physical violence by an intimate partner within their lifetime. No certain kind of person is too good for domestic violence as it doesn't follow any social economic lines. It can happen to any one from any race, color, class or educational background. Let's look at some statistics!
- According to the Huff Post Women are more likely to be victims to violence from a intimate partner with 85% of all domestic assault cases being women and only 15% being men.
- According to Huff Post Women with disabilities are FORTY PERCENT more likely to experience intimate partner violence -- especially severe violence -- than women without disabilities.
- The Hotline reports that nearly half of all women and men in the US have experienced psychological aggression by an intimate partner in their lifetime.
- According to Springtide Recourse 35% of all women who are or have been in married or common-law relationships have experienced emotional abuse. In comparison, 29% of women have been physically assaulted by their male partners.
Some feel that emotional abuse is not that big of a problem but it has been found that emotional abuse is actually the largest risk factor and can be the biggest predictor for physical violence
Having come from past relationships where there where I dealt with some abuse (no physical abuse). I can say that the above statement is true. Emotional abuse does lead to physical abuse. While I can say I was lucky and got out before the abuse got physical, but I could see it coming. There were signs pointing towards violence. And pointing to the fact that it likely wouldn't be the wall that would punched next time, it would be me. Or that it likely wouldn't be the glass that would broken next time, it would be me. When those things started happening I got out. I stayed longer than I should have, but I got out. That being said I do understand why ladies stay. You always want to believe the best, believe that it could never be true, believe that the lies aren't true and believe that they can change. Sadly, chances are, it will be you and the lies are true, and you need to get out before it's too late. I know this is going to sound crazy and I know that some of the people I've said this to over the years have thought just that. But there were times when I wished I would have just been hit. The physical wounds would heal and go away. But the awful things that were said to me stay with me so much longer.
As I am writing this post this morning the following makes me feel like I'm not alone in my thoughts and feelings. And made me realize I am not alone in how I've dealt with everything.
"Most women indicate that emotional abuse effects them as much, if not more than, physical violence. They report that emotional abuse is responsible for long-term problems with health, self-esteem, depression, and anxiety. In one study 72% of women reported that being ridiculed by their abusive partners had the greatest impact on them, followed by threats of abuse, jealousy, and restriction [or isolation]. It was also found that the impact increased with the frequency of the emotional abuse."Springtide Resources
People always just say why don't women JUST LEAVE?!?? And there are a lot of reasons. The biggest being safety. Many women dealing with physical abuse fear their that their abuser will find her (and her kids, if she has any) and hurt her, maybe worse than ever before or even kill her. Another reason is often lack of resources. In many cases they don't have money of their own that's not tied to their abuser. She also may have not told her family so they don't understand or may not support her decision to leave, because they may feel like she is making it up or making it seem like it's worse than it is. Sadly, in many cities outside of emergency, short-term shelters, there really aren't many long term options available to women who have been abused. Due to the lack of accessible affordable house, low income, and affordable legal aid on average an emotionally abused women will leave her significant other FIVE times before leaving for good. Springtide Resources And for a women who has a chronic illness it may be even harder for her to leave due to her health.
As I noted at the beginning of this article women with disabilities are more likely to experience abuse. As I was doing my research I was shocked to find that there is a strong link between those who suffered domestic abuse and those who have some type of chronic illness. There was a survey done in 2013 By MORE Magazine and the Verizon Foundation of domestic violence survivors in the US. This particular study showed that that 80% of domestic violence victims experience chronic health problems such as diabetes, high blood pressure, chronic pain, asthma, and insomnia. It also found that women who had a past with domestic violence are not only more likely to suffer from chronic illness, they are more likely to suffer from multiple chronic illnesses then women who have no history of abuse.
Domestic violence is a very personal and often very hard to talk about, or admit it happened to you. For some reason it almost feels like you are less. If a person because it did happen. But that isn't the case. It doesn't make you any less of a person. It happened to you Not because of you. Please if you are in an abusive relationship or know someone who is, reach out to someone and try to get out. If you don't feel like you can reach out to a friend or family member you can always reach out to The National Domestic Violence Hotline at 1-800-799-SAFE. They also have a Live Chat feature that can be found at https://www.thehotline.org/contact/ that is always available. Or reach out to your local dr, pharmacist or anyone in your medical community as they are all mandated reporter. If you report abuse to them they are required to report it to the law. No matter who just reach out if you want out.
If you want more statistic or resources check the links below:
Dear Lupus, Back in 2012 I was happy and just going about my life and was actually very excited about where my life was taking me....
But you couldn't leave it that way. You just had to make yourself known. You came into my life like a hurricane. You set me down a path that I had no say in and was not really ready to face. No one asked you to leave that dormant state you had been living. And you certainly weren't given an invitation to become the center of my life. However, you did just that and in the process changed just about everything I knew and was comfortable with. You came in and made it known by all that you were GOING TO BE THE CENTER OF ATTENTION. Who asked you to come? Who asked you to come into my body and take my life away?? I sure as hell didn’t.
Looking back, I can see that you made yourself known and reared your ugly head the first time when I was in highschool. Although no one called you by your proper name. Instead they kept telling me that I had a bad case of mono. Mono that lasted SIX MONTHS?!?! Really?!?? Being a teenager I always wondered why the simplest tasks made me exhausted and how the people around me could go-go-go for hours, when I couldn't. It was because of you LUPUS.
You went away for several years for the most part and I was grateful. Even so, I continued to wonder through the rest of high school and college why I couldn’t be as active and involved like the kids my age etc. it was bc of you. Damn you for taking away my years when I should have been having fun!
Finally six years ago you officially made your move. You moved in for good, and brought all your baggage. Although we never discussed this, and I never agreed to this. I didn’t give you a key or clear out a drawer for you. Instead you just made yourself welcome. Since that day that seems so long ago you've made my life or a good part of it a living hell. Because of you I have lost friends because they think I don’t want to see them or that I’m just full of excuses as to why I don’t want to go out to the bar after work. Or because they simply don’t understand when I say I’m tired it’s not just lay down and take a nap tired it’s pure exhaustion. Because of you I had to walk away from my nursing career after only 11 years. I planned on working in the medical community until I retired. But you once again had another plan. And your plan won, even though I didn't agree. But the biggest problem I have with you isn't related to losing my career, or friends. My biggest issue is how hard you've made it for me to be able to watch my sister play ball. She is one of my very favorite humans in life. And watching her pitch is one of my all time favorite things to do. But because of you I was virtually unable to do the last couple of years. Mainly due to the intense heat intolerance I developed due to Lupus. And the other issues that the heat causes for me, like headaches. And it literally has broken my heart. This summer was the last ball season of her career and I only got to see her once. I know she understands but it still hurt me so much.
You came and brought along uncontrolled pain (at times), long term steroids (leading to weight gain), inability to be in the heat or sun, sleep issues, and a plethora of other very undesirable conditions that go hand in hand with you. I can never thank you enough for your generosity. You brought all your friends (other medical conditions) along with you when you moved in. I didn't want you and I definitely didn't want any of them!!!
I have decided I am done, you have been "kind" enough. But now it's is time to go away and take all the “gifts” you’ve brought with you that are also not welcomed here.
One of the reasons I hate you the most is because between you and your "friend" endometriosis I will no longer be able to carry my own baby. And I've never wanted anything more than to be a mother. But because of you, the side effects of the drugs I take to treat you and your friend endometriosis, carrying my own baby is no longer possible. My lifelong goal gone in a second. I have always wanted to adopt so I know that's still an option. But it's still not quite the same as having your own baby. But I will be greatly appreciative of any child that God gives me.
When you leave you can also take the Adrenal Insufficiency and Hemiplegic migraines with you. Because of the three of you I had to quit my job and move home with my parents. Because you were all being so mean. At times of big flares, illness or hospital admission my blood pressure can drop and stay in the 70's and 80's. Also because of you I have spent more time in the ER/Hospital in the last FEW YEARS than one person ever should IN A LIFETIME.
I'm tired of all of you. Tired of all the medications, the depression, the anxiety and most of all the pain. I never asked any one of you into my life, yet you are all here. You have changed my life in more ways than I can count. I've lost the majority of my local friends, I can no longer work on gaining a degree to teach nursing school because of you. You have even made it very very hard for me to hold down a job. You need to pack up and get the hell out of my life! GO. GO I tell ya!!
One thing that keeps me going is mysister's unwavering faith in God. And her prayers. Because of her I have been able to find my relationship with the Heavenly Father again. Because of that I now live by the verses.
Philippines 4:13 I can do ALL things through Christ who strengthens me.
Isaiah 41:10 So do not fear I am with you; do not be dismayed for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand.