Abuse And Chronic Illness

IMG_5298Just because you are sick does not mean to should settle for being treated badly. Some people like to look in from the outside and make assumptions. “Your life must be perfect.” “Your marriage is so amazing.” What do others truly know about your private life? Nothing other than the theatrical performance you put on for them. What they choose to see or believe is what they think the reality of a your acting expresses.

Just because someone stays with you because your sick doesn’t mean that person is perfect or completely selfless. Sometimes, in some people’s lives, their spouses are abusers. The healthier person can form resentments towards the ill spouse. These resentments built up, comments begin to be said as little jabs here or there, these eventually snowball into larger more hurtful words. Chronic illness is hard on the person affected and those around them.

Just because your loved one is sick does not give you the right to verbally, or physically abuse them. Should you find yourself resenting your spouse for their illness, I urge you to get help for yourself. If you are a spouse, close friend or family member of someone who is sick and you know you are abusing them check yourself. Seriously, take a minute to ask yourself who are you really angry with? Blaming someone who is sick for being sick is illogical. Everyone deals with illness differently.

Someone who is chronically ill didn’t ask to be ill, they didn’t wake up one morning and say, “I have decided my life goal is to be sick and purposely disrupt the lives of others.” Before anyone is chronically ill they generally have the normie (someone who is not sick) mentality, living life to a good old age, accomplishing things they set out to do, having kids, white picket fences, walks on the beach with their spouse and countless vacations.

The sad reality is there is spousal, elder, family and friends that abuse and take advantage of people close to them who are sick. Abuse in these relationships stem from resentment. If you are resenting an illness you are resenting something that someone can not control. Yes diseases, illnesses, can and do destroy the physical body, what good is it to destroy the mental well-being of someone who is all ready suffering from physical ailments.

Denial is something that abusers love to live in. They will deny the fact they are abusing a loved one because they themselves do not view their mocking slander as harmful. These disillusioned abusers will also convince them-self they are justified in any verbal or physical abuse, because the resentment fuels their actions.

Not everyone’s relationship turns abusive but it is important to know that no matter how sick you are, you don’t deserve to be mocked for being ill. You don’t deserve to be treated aggressively, and verbally assaulted. Being battered and beaten physically is not acceptable behaviour towards anyone who is sick or healthy. It is not your fault you are sick, chronic illness happens. You deal with so much all ready. You don’t need to deal with being abused on top of it.

Please know you can reach out for help. Some people chose not to and that is their choice there is nothing we can do to change that. Please be kind and respectful of others and their decisions, we truly don’t know the full story. Not everyone that is abused will come forward or talk about it. Standing up or yourself and your rights is key in finding a happier you.

Thank you for reading my little blog post about abuse and chronic illness. Take care of you. You are worth it.

Hugs, and hope always.

💗Anna

Nicole Her Story And She Needs Our Help

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MCAS (mast cell activation syndrome) is a immunological disorder where mast cells are released and cause chronic symptoms including and not limited to anaphylaxis. Learn more about MCAS here http://www.jillcarnahan.com/2016/10/31/mast-cell-activation-syndrome-mcas-when-histamine-goes-haywire/

Ehlers-Danlos Syndrome is an inherited connective tissue disorder that causes a variety of symptoms, affected individuals can be either mildly affected or severely affected and become disabled. Learn more about Ehlers-Danlos here https://ehlers-danlos.com/eds-types/

POTS (postural orthostatic tachycardia syndrome) causes an abnormal rise or fall in blood pressure when someone stands up. POTS can cause someone to pass out, you can learn more about POTS here http://www.dysautonomiainternational.org/page.php?ID=30

Nicole has been diagnosed with EDS types 1, 2, and 3, because of EDS she has complications such as POTS, and TMJ. Nicole lives in Chicago with her mom and is need of help to get to see a doctor that costs around $1500 per visit. The doctor she needs to see is the EDS specialist in the USA. At the young age of 3 Nicole would tell her mom that the left side of her body being in pain. Doctors thought I had an ear infection and prescribed cefaclor (an antibiotic used for ear infections) they gave her a dosage amount that was three times higher than normal.

Her body rejected the medication leaving her paralyzed from the neck down. This reaction was due to MCAS (mast cell activation syndrome) but didn’t know this at the time. “No one knew at the time I had EDS, POTS, and MCAS, they told my mother to start looking for a casket.” Nicole has always caught infections easily and was a sickly child.

Nicole’s mother took her to a place where fifteen students stared at Nicole trying to put the puzzle pieces together of what was happening to her. Nicole was still paralyzed from the neck down at this point and every time she would eat she would vomit. Her urine would turn into a jello like texture when she would go to the washroom. Three months of vomiting up food and Nicole it’s a miracle Nicole is alive today. She was on IV’s everyday she was vomiting what looked like a black substance in addition to blood. Her red blood cell count was through the roof leading doctors to believe this is Nicole’s autoimmune disease presenting itself.

She continued her life as regularly as she could after she gained back some mobility. At the age of 13 and into college Nicole was a victim of bullying. She attributes this to being different it was hurtful, Nicole shared about being bullied, “being bullied led to what we know now are flare ups.”

Another time I ended up paralyzed when the doctors gave me another drug called omnicef the doctor didn’t listen to nicole and gave this drug to her anyways. “I ended up with a large golf ball sized lymphnode on the left part of my neck which doctors extracted. Still doctors couldn’t figure out what was going on.”

Nicole recalls, “people would call me a liar and a hypochondriac. People would tell me to suck it up and that there was worse out there. While I was dislocating every joint and fighting chronic pain everyday.” A problem with EDS is the micro tearing in the ligaments that happens overtime.

“I started to experience ‘highs’ of my blood. I started to pass out in school. It was happening around 6-8 times a week. I would pass out and not know what was going on because all of this happened before my diagnosis. Doctors thought I was bipolar, depressed, has anxiety, and a hypercondriac, so they put me on meds. Been through all sorts of different meds since I was 13, 13 different meds actually. People were not nice to me and continued to call me names in school.”

Nicole thought for a long time she just maybe arthritis because of her deformed fingers. Nicole had large wounds and bruises on my body, “People thought I was being abused by my parents.” Overtime Nicole realized she had stretchy skin, and she was flexible to the point of chronic dislocations. For a while it seemed that because of Nicole’s problems she wouldn’t be able to graduate school. “I was put into a special ED class and I loved it. I graduated and went into doing hair.”

Since doctors believed that bipolar, depression and anxiety were the root of Nicole’s problems they put her on dangerously high dosages of celexa. “The dosage was so high one doctor said I should be in heart failure from it.”

“I love hair dressing and decided to get into it. I am good with hair and colours.”

Over time around the age of 19 Nicole noticed the severe pain in her jaw. “People would avoid me in hair school because they thought I was a complainer. I tried to explain to teachers why I was missing school. At this point I had been sexually assaulted and couldn’t figure out what going on with me. I lost all my friends. I decided to save up my moment at age 24 I was diagnosed.”

Nicole had ankle surgery to repair the torn tendon in her ankle. “Doctor said he had never seen a leg like mine, the skin wouldn’t close, my ankle needed to be stapled crisscross, and had to be re-stitched three times.”

She began to realize she was more flexible than the average person. Flexibility maybe a new fad or an old one that is back in the lime light, however, being more flexible with something like EDS makes you rather clumsy. It took a long time to get a diagnosis, my family and I found out at 24 I have EDS types 1, 2, and 3 and POTS. “I have learnt I need to tell doctors exactly what is going on. And make sure they know to not give me any drugs related to those those two drugs that have caused me to become paralyzed.”

Nicole needs our help to get to a doctor to that knows EDS. She is in need of around $8000 let’s help Nicole reach her goal. Us fellow zebras need to stick together.

Nicole shared with me, “My inspiration for GoFundMe is to become the face of EDS in Illinois to help other doctors become educated by the superior ideas doctor and it could also benefit other zebras in the area to get at least some type of treatment instead of doing completely nothing. I want to be able to see doctors in Illinois to give us a chance or some type of treatment because if dr. Chopra has contact with my Dr he can direct the doctors in Illinois to help other people in Illinois and what to do because he’s the founder.”

Nicole you have been through a lot and you are a tough cookie. I am honoured and blessed to call you my friend.  I am hopeful for you to get the help you need. I give you permission to use this writing on your gofundme. Please link it to the blog post. You aren’t alone. Us zebras need to stick together.

You can donate to her gofundme here https://www.gofundme.com/nikkis-med-testingresearch-funds

Hopeful for you always.

💗Anna

5 Different Types Of People You’ll Meet When You Are Chronically Ill

IMG_5265There are five different types of people who come out of the wood works that when you are chronically ill. The different types of people are the fixers, pitiers, manipulators, the indifferent, and caregivers.

A fixer is someone who goes ahead and makes decisions for you when you don’t ask them to. This would include cancelling appointments, showing up unannounced, suggesting things to the point where they’ve beaten it to death, and they tend to get frustrated when you ask them to stop, or to mind their own business. The difference between a fixer and a caregiver is that a fixture thinks that the newest latest trend in healthcare will fix you. Whether this is volcanic ash, mushrooms, infused juices, oxygen therapy, hydration therapy, and the list goes on and on. The point is a fixer thinks that they can fix you. Where it really starts to frustrate me is when someone suggests and suggests to me things over and over again and they explained to me that it will fix my illness. Now the problem here is I don’t have just one illness and I don’t have just one complication I have multiple of both. Having someone tell me that something they discovered on the Internet or tried themselves is going to fix me it’s highly unlikely unless they have all the diseases that I have. And I’m not mocking or condemning any holistic approach to getting better. What I am saying is I have tried my fair share of stuff and have had adverse reaction’s. It is not safe for me to be putting new things into my body that I have not tried and could mess with my medication. Prime example here is the charcoal toothpaste I tried, it however absorbs and cancels out some of my meds. Not something listed on the label is that Charcoal actually absorbed and neutralized my medication. So this lovely thing that is so good for so many, is not something I can take because of the extensive list of my medications. There’s nothing wrong with being a fixer I understand why you’re a fixer. But as I have said to countless fixers over the years, please stop trying to fix me because I’m not a broken vehicle that you can replace a part in, I am not an experiment for you, I am my own person I can make my own decisions so please back off. I mean that in the most loving way because if you keep pressuring me into trying things that you want me to try it’s never gonna happen, and can eventually lead to friendships, and relationships breaking down.

Pitiers people who only feel sorry for you. I myself despise pity. It’s a big reason I didn’t tell people I was sick for a really long time. When I was first diagnosed with cancer the pity started flooding in. There were many comments made by people during that time that made and broke our relationships. Pitiers are the types of people that look down on you, they view you as sick, weak, and only can see you as an object of their pity. Over hearing others say, “at least your not as bad off as Anna,” is not only hurtful but it also shows the pitiers will us you to lift others up. In the sense of throwing you under the preverbal bus. I have also overheard people say, “poor Anna another diagnosis, of course she has that wrong with her too.” I understand some people don’t know what to say, however, the biggest and most obvious sign of a pitier is their eyes. You can tell by the way they look at you they are taking pity on you. This is why I didn’t tell people all of my illness journey until the last few years. I truly will never like pity, I still get pity looks. I don’t pity myself and I don’t need your pity.

Manipulators are those who either enter our lives after being sick or are with us from the beginning. Manipulators make you feel bad about being sick. They try to get you to do things that they want you to do and this usually involves you doing things for them. Don’t get me wrong I fully believe in helping out your fellow human and being a friend No matter how sick someone is. But when people manipulate you and try to convince you have to do everything for them,it’s time to reevaluate. Manipulators are toxic in any relationship, in my experience they can be deadly when you are chronically ill. It is wise to evaluate your inner circle regularly. I contantly take an inventory of those around me, I would encourage you to do the same. People who lift you up, encourage you, those are who you should keep in your life. If those you are wanting to keep in your life are manipulators please reconsider. Realize what a manipulator is, how they treat you, and how they could drastically affect your health in a negative way. I have been manipulated before. One of the signs of a good manipulator is guilt they leave in their wake. Manipulators do not have your best interests at heart, they are doing what they want to do for them and their own well being. Cutting a manipulative person out of your life maybe hard, they will tell all those around them that you were and are the bad guy. Hopefully others will eventually see what you saw. Don’t give up on you, you deserve better.

Indifferent people are those in your life that don’t necessarily care that you’re sick, and don’t really want to know what’s going on but they will listen. They seem to have no opinion about your illness, and also don’t understand the limitations of it. You can either view indifferent people as good or bad. Some people like to keep these kind of people in their lives because they almost in a way continue to treat you like you are healthy, they may give you a false sense of encouragement to continue to do things that doctors have said not to do. Please be wary of the indifferent they do tend to keep their own agendas over yours.

Caregivers are those who stick with us. They pull along side us as our health disappears. They remind us we are loved, we are important, and we deserve good things. Caregivers are not just family members, spouses, or lovers, caregivers are also true friends. True friends holding a greater understanding for their chronically ill friend. A caregiver does not try to fix, they do not pity, they do not manipulate, and they are not indifferent. A caregiver makes up for all the negative aspects of others. A caregiver always needs a break, not to hurt the person they care about, but to recharge. Some people will look at a relationship with a chronically ill person as a burden, as gaining a dependant.  Not a caregiver, they view a chronically ill person as a person, they have empathy, they see them for who they are and not as a illness. A true caregiver will seek out the love of their life and fully embrace that chronically ill person, body, mind, and soul. Illness does not make you unloveable. A caregiver will step up to the plate and go to bat for the person they love,p. A caregiver is a one of a kind person. A special, selfless soul, that truly wants to offer love, and help. They respect the other person wishes no matter how hard it is. These people do exist. They are all around us. We all deserve love, happiness, respect and hope. Caregivers are amazing people and they are all those who stick with you. It’s because they care.

There are all types of people in the world, it’s important to know what they kind of people you are dealing with. You know there is nothing wrong with being sick, but don’t let yourself be pushed around by others because you are sick. You matter. You do have great worth, you deserve love, and respect. Do not quit on yourself.

Hopeful always.

💗Anna

May Is EDS Awareness Month!

IMG_5037May is Ehlers-Danlos Syndrome awareness month. What is EDS? It’s a connective tissue disorder that is inherited (passed down from generation to generation). EDS affects, skin, joints, ligaments, muscle, tendons, GI track (stomach), blood vessels and organs. Connective tissue is found in everything. People with EDS lack the vital part that helps keep them glued together.

Why a diagnosis is so important! If you are living with EDS you may not realize it, and EDS can cause internal organ problems. I am not saying this to freak you out, but if there is stuff happening due to EDS you may need to be treated and knowing EDS is causing problems is the first step.

EDS is more than skin and joints. I am affected by EDS in a multi-systemic way. You aren’t alone, don’t fear the diagnosis, embrace it, after you grieve the diagnosis and change in your life please come and join me in acceptance. I will be here for you all the steps of the way. No one should have to live alone in their disease not ever.

Ehlers-Danlos Syndrome affects each person differently. There are various types of EDS, the ones I know a bit about are, hEDS, cEDS, vEDS, kEDS, sEDS, dEDS. Please note this isn’t a complete symptom list of each EDS but more of a short overview.

hEDS is Hypermobile Ehlers-Danlos Syndrome. People with hEDS generally have hyperextendable joints, mild skin hyperextension, abdominal hernias, abnormal stretch marks, atrophic scarring, prolapses, chronic wide spread pain due to dislocations and subluxations.

cEDS is Classical Ehler-Danlos Syndrome. cEDS is diagnosed through a genetic test. People with hEDS generally have hyperextendable joints, skin hyperextension, atrophic scarring, chronic joint dislocation and subluxations.

vEDS is is Vascular Ehlers-Danlos Syndrome. vEDS is a life threatening disease. vEDS is diagnosed through a genetic test. People living with vEDS can have the following, chronic joint dislocation and subluxations, congenital dislocation of the hip, rupture of the hollow organs, rupture of the aorta (aortic aneurysm), thin translucent skin where you can see the veins in the neck and chest,

kEDS is kyphoscoliotic Ehlers-Danlos Syndrome. kEDS is diagnosed through genetic testing. People with kEDS generally have the following hyperextendable joints, skin hyperextension, kyphosis or scoliosis that progress and can eventually cause breathing problems, severe hypotonia at birth, and fragile sclera.

spEDS is spondylodysplasia Ehlers-Danlos Syndrome. spEDS is diagnosed through genetic testing and patients with this generally have the following, soft doughy translucent skin, progressive short stature starting in childhood, poor muscle tone, and bowing limbs.

dEDS is dermatosparaxis Ehlers-Danlos Syndrome. dEDS is diagnosed through genetic testing and patients with this generally have the following extreme joint hyper-mobility, loose sagging skin, easy bruising, and hernias. This form of EDS can lead to blood clotting problems, and damage to internal organs.

Since EDS is not curable all that can be done is preventing further injury to the joints, bracing, physiotherapy, counselling, and other palliative care options.

It is important to know you are not alone. There are others like you living in this world, we can make a difference with our collective voices.

I hope you enjoy the first EDS slide show I did with other people in hopes of raising awareness for EDS. https://www.youtube.com/watch?v=H444kceT_0c&edit=vd

We all matter. Please reach out me to chat about your journey. I will gladly listen.

Hopeful always.

Anna