It’s Okay Not to Be Strong Every Day

img_8253As a woman, and especially as a woman who battles a chronic illness, I have this overwhelming need to appear strong and appear like I have it together every day. I know that many of you can relate to this. A need to be strong for the people around you and a need to project this air of confidence, capability, and good health.

If you’re like me, you want to make sure that you make everyone else feel good. You check on them. You want everyone else to be okay. You don’t want your illness to affect the people around you, so you put on a charade. You say you feel fine even when you don’t. You go out and participate in activities even when you don’t really feel up to you it. You take care of everyone and everything even though you can barely take care of yourself and are barely holding everything together.

But we don’t have to be strong all the time. We don’t have to do everything ourselves. It is okay to not be okay. It is okay to not be strong all the time. It is okay to be real with the people in your life and tell them that it’s not a good day if you’re feeling bad. Chronic illness is not something that we can just pretend doesn’t affect our lives and we shouldn’t have to.

Ask for help. Listen to your body. Be honest about how you are feeling. Rest when you need to. Take care of yourself. Put yourself first once in a while. Rely on the people in your life who love you and are willing to be there for you.

Remember it is okay not to be okay. It is okay to not be strong every single day. Remember this the next time you’re about to tell someone you are fine when you are really in pain.

Keep Kickin’ AS!

Gentle Hugs and Extra Spoons to You All.

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How to Survive the Holidays with a Chronic Illness

Holidays are stressful enough without having a chronic illness. And just getting through a regular day with a chronic illness is difficult enough without the added stressors of the holidays. So here is your Holidays with a Chronic Illness Survival Guide.

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Dress for Comfort

Sure there will be family pictures and selfies and surprise snapshots, but dress for your comfort. If you know that tags, tight jeans, wool, turtlenecks, etc. cause you irritation don’t wear them. Opt for something that is stylish and comfortable like leggings and a cute flowy top or these comfortable and stylish options for men. If you know that you are cold or warm natured or that your mom tends to keep her house an uncomfortable 80 degrees, dress accordingly.

Be Prepared to Fight the Cold and Germs

tissues and hand sanitizerIt may be the holiday season, but it is also cold and flu season. Bring along pocket sized hand sanitizer and tissues. Also, fight the cold weather and any drafty houses with scarves, gloves, and layered clothing. Cold air, drafts, and germs are a chronic illness warrior’s mortal enemy.

to do list clip artPlan Ahead

Planning ahead can take a lot of the stress out of the craziness of the holidays. That extra stress can undoubtedly lead to a flare. Have a plan and a to-do list to keep you organized and on schedule. Invest in a planner!

Rest Up

And while you are planning, schedule in some down time to allow yourself to rest. Down time will actually allow you to slow down and enjoy the time with your family and friends so much more. If you know you have a big event that will use up a bunch of spoons, try to rest more the day before.

Ask for Help

It’s common to have trouble asking for help, but it is a necessity for a Spoonie to survive the holidays.

If you find yourself hosting the holiday festivities go potluck and ask everyone to bring a dish or two.

Ask for help cleaning up afterwards.

Enlist a friend or two to help with wrapping gifts. Put on some holiday movies or music, pop open your favorite bottle of wine (or whatever beverage doesn’t worsen your symptoms) and make a day of it.

Pace Yourself and Be Realistic

During the holidays we want to say YES! We want to be involved in all the fun activities, How to Survive the Holidays with a Chronic Illness pace yourselfbut we need to be realistic and pace ourselves. If your mailbox is flooded with invites, don’t say yes to all of them if you know that it will wear you out and send you into a flare. Don’t sign up for every Holiday fun run, every Caroling excursion, don’t volunteer to sew all of the costumes for the Christmas play, and volunteer to go on the hike to cut down the Christmas tree. Limit and pace yourself to ensure that you can enjoy the events that are the most important to you.

Shop Online

Avoid the crowds and long lines that can do a number on our bodies and emotions by shopping for gifts online. Save yourself the physical pain and maintain your sanity.

Bring Your Own Food

How to Survive the Holidays with a Chronic Illness Bring Your Own FoodIf you’re going to someone else’s house to stay for the holidays or holiday meals bring along your own food if you have special dietary restrictions. It will keep you healthy and you will avoid a flare up if you maintain your diet. Let the host no ahead of time that because of your health needs you will bring your own meal. Your host will undoubtedly understand and appreciate the heads up. And they will be grateful that you didn’t expect them to cater to your specific needs.

Listen to Your Body and Don’t Feel Guilty

As always, the most important survival tip is to listen to your body. Take time to care for yourself and your body’s needs. Rest when you need to rest. Eat the foods that make your body happy. Don’t feel guilty if you can’t stay up late chatting with family. Don’t feel guilty if you need to sneak off for a quick nap before you holiday meal. Taking care of yourself is always priority number one, even during the holiday mayhem!

Do you have more tips to help us all survive the holidays with our chronic illnesses? Leave your tips in the comments.

Happy Holidays, Warriors!

Keep Kickin’ AS!

Extra Spoons to You All!spoons-19.png

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.
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Possible Complications of Ankylosing Spondylitis

Ankylosing Spondylitis (AS)is a chronic, autoimmune type of arthritis that triggers ankylosing spondylitis backpainful inflammation in the body. Most commonly, AS affects the back, buttocks, and pelvic region, but symptoms can spread to other joints and organs within the body as the disorder progresses. Also note, that this disorder affects every individual differently and in some cases the symptoms can begin in the peripheral joints (joints not located in the spine such as knees, ankles, wrists, fingers, etc). Uncontrolled inflammation can contribute to other complications throughout the body ranging from mild to severe and disabling.

Possible complications are:

  1. Fatigue – Fatigue and tiredness is one of the most common symptoms of Ankylosing Spondylitis. The cause of the fatigue is the higher levels of inflammation within the body and the body’s constant fight to try to keep the inflammation under control. Fatigue is often labelled patients as the most debilitating of their symptoms. Some have described the Fatigue to be similar to the fatigue that accompanies the flu. However, unlike the Flu, you do not recover from AS in just one or two weeks. TNF-inhibitors prescribed by rheumatologists as well as regular exercise can help to lighten the load of the immune system, thereby relieving the fatigue and improving the patient’s quality of life.
  2. Reduced flexibility – as with most kinds of arthritis, AS patients can experience reduced flexibility in some or all of their affected joints. The damage to joints caused by inflammation can restrict the movement of muscles and joints as the disease progresses. With AS patients, a Yoga-Poses-to-Help-Ankylosing-Spondylitis-03-722x406particular concern is that this will happen within the spine and that the spinal vertebrae will begin to fuse in the lower back, causing a permanent slumped forward position. In some cases, this can lead to permanent disability. It is important for AS patients to maintain an active life to promote and encourage their joints’ continued flexibility. Consult your physicians for approved exercises and stretches to maintain and increase flexibility safely.
  3. Eye Problems – It is important for AS patients to maintain regular check-ups with ophthalmologists as inflammation can spread to the eyes. Inflammation of the eye can be a symptom of Uveitis or Iritis, depending on the exact location of the inflammation within the eye. Let your doctors know if you experience eye redness, light sensitivity, eye pain, blurred vision, see spots, or experience unusual puffiness around the eyes. Ophthalmologists are medical doctors and you can use your regular medical insurance for their visits. Ophthalmologists will do thorough examinations of your eyes to ensure that you maintain proper eye health and they can monitor the affects that Ankylosing Spondylitis may have upon your eye health and vision.
  4. Social and Employment Problems – Ankylosing Spondylitis can affect a person’s social and public life as it progresses. AS can limit the type of work a person can do, especially when it comes to physical labor. Some AS patients may be able to work a full 40-hour week, some can only tolerate a few hours a day, and others may not be able to work at all, depending on how advanced their AS is and the jobs that they are expected to perform. Depending upon the AS patient’s limitations, they may eventually need to file for disability. AS patients should learn and focus proper sitting and standing posture, and take frequent stretching breaks if they spend a large portion of their time seated at a desk to prevent any further damage. Taking breaks to move around and stretch will prevent joints from locking up or becoming stiff. This also helps to keep the blood flowing and can assist with fatigue. It can grow increasingly difficult for people with AS to get out and socialize as their energy gets depleted from daily tasks. Chronic pain can be isolating as people experiencing the pain are less likely to visit friends. This isolation can lead to depression. Joining support groups, socializing online, and working to maintain friendships and relationships can feel draining, but it is important to do so in order to maintain your mental and emotional health.
  5. Gastrointestinal Disorders – AS inflammation can spread to the intestinal tract causing stomach pain and digestive issues. Symptoms of inflammation within the intestinal tract include: stomach pain, stomach ulcers, diarrhea, constipation, and problems digesting. In severe cases, Ankylosing Spondylitis patients can also develop Irritable Bowel Syndrome, Crohn’s Disease, or Ulcerative Colitis. It is important to discuss any of these symptoms with your doctor. They may provide you with dietary advice to limit the symptoms of these disorders.
  6. Osteoporosis – Osteoporosis is a medical condition in which the bones become brittle and fragile from loss of tissue. The bone becomes less dense than normal osteoporosis_s1_bone_densitywhich leads to the bones being weak and prone to breaks and fractures. When this disease develops in the spines of Ankylosing Spondylitis patients (caused by the severe inflammation within their body) it increases their risk for spinal injury. AS patients frequently develop Osteoporosis, even in the early stages of the disorder.
  7. Increased risk of heart disease – Cardiovascular problems that Ankylosing Spondylitis may contribute to include:
    1. Aoritis- Aortitis is inflammation of the aorta, and it is representative of a cluster of large-vessel diseases that have various or unknown etiologies. While inflammation can occur in response to any injury, including trauma, the most common known causes are infections or connective tissue disorders. Inflammation of the aorta can cause aortic dilation, resulting in aortic insufficiency. Also, it can cause fibrous thickening and ostial stenosis of major branches, resulting in reduced or absent pulses, low blood pressure in the arms, possibly with central hypertension due to renal artery stenosis.
    2. Aortic Valve Disease – Aortic valve disease is a condition in which the valve between the main pumping chamber of your heart (left ventricle) and the main artery to your body (aorta) doesn’t work properly. Aortic valve disease may be a condition present at birth (congenital heart disease), or it may result from other causes.
    3. Conduction problems – Your heart’s rhythm is its pace or beat. Conduction is the progression of electrical impulses through the heart which cause the heart to beat. You can have a conduction disorder without having an arrhythmia, but some arrhythmias arise from conduction disorders.
    4. Ischemic Heart Disease – Ischemic heart disease is also known as coronary artery disease or “hardening of the arteries.” Cholesterol plaque can build up in the arteries of the heart and cause “ischemia,” which means the heart is not getting enough blood flow and oxygen. If the plaque blocks an artery, a heart attack can result.heart
    5. Cardiomyopathy – Cardiomyopathy is a condition where the heart muscle is abnormal. The main types of cardiomyopathy include dilated, hypertrophic and restrictive cardiomyopathy. Cardiomyopathy makes it harder for your heart to pump and deliver blood to the rest of your body. Cardiomyopathy can lead to heart failure.

It is important to take preventative measures to reduce the risk of cardiovascular problems. Though this applies to every individual, not just AS patients. Regular exercise and a healthy diet should be included as part of the treatment plan for Ankylosing Spondylitis. It also helps to avoid tobacco use and maintain a healthy weight.

  1. Amyloidosis – Amyloidosis is a rare disease that occurs when a substance called amyloid builds up in your organs. Amyloid is an abnormal protein that is usually produced in your bone marrow and can be deposited in any tissue or organ. Amyloidosis can cause symptoms such as weight loss, water retention, tiredness, and in some cases tingling of the hands and feet.
  2. Cauda equine syndrome – This extremely rare condition is a bony overgrowth caused by inflammation. It leads to pressure and swelling at the end of the spinal cord. The swelling can compact the nerves in the lower part of the back. If left untreated Cauda Equine Syndrome can lead to paralysis.

There are links provided within this blogpost to provide more information for some of these listed complications. Please consult your health practitioners with any questions or concerns you may have.  It is important to be your own health advocate when you have a chronic illness. You know your own body better than anyone and you know when there is something that is off, wrong, or not working the way it should.

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.

Enbrel Injection Day

Today I received my four-weeks supply of Enbrel from Lumicera. Every four weeks I give them a call and they deliver my medication right to my door. Enbrel Delivery

The medication arrives packaged in a cooler with ice packs to keep the medication cool. IMG_2928(Enbrel is supposed to be kept refrigerated.) Lumicera will also provide me with other supplies if I need, such as travel cases for the medication, alcohol swabs, and sharps containers to dispose of my needles.

I use the pre-filled syringes, but they also offer an auto-injector pen and multi-dose vial. IMG_2933It’s up to you and your personal choice which you choose to use. I find the injector pen to be more difficult to use and more painful.

Enbrel is injected into the lower abdomen or the upper thigh area. I alternate the left and right side of my abdomen. IMG_2940

Pain wise the injection just pricks a little bit like any shot. If you leave the syringe out of the fridge for about thirty minutes to allow the Enbrel to warm up a little the shot stings less than when it is cold.

Enbrel® (etanercept) is a biologic / Tumor Necrosis Factor (TNF) blocker that affects the immune system. It is used to treat 5 inflammatory conditions. According to the Enbrel website, Enbrel is shown to be effective in about 3 out of 5 adult Ankylosing Spondylitis patients at 6 months. Clinical responses were seen at 2 weeks in 46% of patients, with 59% of patients receiving benefit within 8 weeks.

As mentioned above Enbrel is a medicine that affects your immune system which means that it can lower the ability of your immune system to fight infections.

Enbrel can cause serious side effects including: New infections or worsening of infections; hepatitis B can become active if you already have had it; nervous system problems, blood problems (some fatal); new or worsening heart failure; new or worsening psoriasis; allergic reactions, and autoimmune reactions.

The most common side effects include: Injection site reactions and upper respiratory infections.

For me, Enbrel has been life changing. Before starting Enbrel, I was on Methotrexate, but it made me constantly nauseous and elevated my liver levels. I’ve now been on Enbrel for about two and a half years and have mostly been able to return to normal living. I’m able to work regularly, work out, and socialize with friends and family. I occasionally still have bad days, but not nearly as frequently as I used to. I began feeling better within the first week of taking the medication, but it did not work miracles overnight. It is only within the last few months that I have felt like my old self. I was able function fairly well over the last couple years, but still had frequent bad days.

Enbrel may not work for everyone and it is not a cure. Ankylosing Spondylitis is different for everyone and the same treatment will not work for each patient. It may also stop working at which point you will need to speak to your Rheumatologist about a new treatment regimen.

For more information visit Enbrel.com

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.

Difficult Activities — A Complied List

About a year ago, I polled a Facebook Ankylosing Spondylitis group that I belong to. (Anklosing Spondylitis for Women)  I asked them what some activities are that they find difficult/painful, if not impossible to do, because of their Ankylosing Spondylitis symptoms. What every day activities that healthy people do every day without thinking about it — taking their mobility and capabilities for granted. Not realizing that they could wake up one morning and suddenly, because of a change in their health, this basic activity has become challenging. The following is a summary of the responses from the individuals who participated in the poll.

Hygiene and Self-Care:hygienic-clipart-15

-Drying, Styling, and Brushing Hair

-Putting on socks and underwear

-Shaving

-Squeezing bottles for bath products

-Getting in and out of the tub

-Putting on bras, underwear, pants

-Tying shoes

-Clipping toenails / Painting Toenails

-Wiping, after using the toilet

-Wearing cute shoes and/or heels

-Popping pills out of foil / opening medication bottles

-Buttoning items

Housecleaning-on-cleaning-free-stock-image-and-clip-artBasic Household Activities and Chores:

-Peeling veggies & slicing veggies

-Draining pasta

-Squeezing Lemons or Limes

-Carrying groceries

-Getting food out of refrigerator and oven (or putting it in)

-Carrying groceries

-Washing the dishes.

-Vacuuming / sweeping / mopping

-Ironing clothes.

-Locking/unlocking a door etc.

-Opening jars and bottles

-Standing to cook

-Shopping trips

-Picking up stuff from floor

-Using a manual can opener

-Gardening

-Cooking

-Carrying out the trash

-Changing bed sheetsCleaning-clip-art-10

-Doing the laundry

-Taking Care of pets

-Cleaning tub/toilet

-Running Errands

-Getting items from top or bottom shelves

-Yard-work

-Using power tools

-Climbing ladders or step-stools

-Changing light bulbs

-Hanging clothes

Physical Activities:

-Being able to jump right out of bed in the morning.Clip-art-women-walking-workout-clipartPhysical-education-clipart-4

-Going up and down the stairs

-Walking

-Sitting up

-Standing more than 10 minutes

-Sitting in a car

-Getting in and out of cars

-Stepping off a curb

-Getting out of Chairs

-Standing up from chairs / toilet

-Riding a bike

-Exercising

-Bending over

-Walking dogs

-Getting up off of the floor if fallen / or sitting on ground

Parenting:

-Playing with children

-Piggy back rides

-Styling children’s hair

-Lifting a baby from a cribFamily-vacation-clip-art-clipart

-Carrying children

-Getting child in and out of grocery cart

-Pushing Child on Swing

-Carrying Children to bed and tucking them in

-Sitting in the stands to attend children’s sporting events

-Sitting through other types children’s programs/performances

Miscellaneous:

-Breathing

-Sneezing / Coughing

-Lifting a full glass of water

-Opening a bottle of water or soda

-Falling asleep

-Staying asleep

-Finding a comfortable position to sleep

-Rolling over in the bedRoad-travel-clipart

-Pressing the gas pedal while driving

-Turning neck to see while driving

-Driving in reverse

-Riding in the car for extended periods of time

-Using touchpads

-Holding on to items – things get dropped a lot

-Carrying a purse / briefcase / suitcase

-Doing ANYTHING in the morning

-Thinking clearly

Fun, Entertainment, Socializing & Relationships:

-Seeing a show or movie at a theater

-Snuggling with a loved one

-Trying on clothes while shoppingDancing-dance-clipart-4-image

-Having sex

-Going to events like rodeos, movies, etc…

-Working

-Keeping up when out with friends and family

-Attending worship services

-Performing in the choir

-Making plans ahead of time and sticking to them

-Laughing

-Writing

-Turning book pages

-Dating

-Hugging

-Shaking hands

-Attending fairs/ theme parks/ amusement parks with family

-Dancing

All of these items are difficult for the individuals who named them because of either pain, fatigue, or their lack of flexibility caused by Ankylosing Spondylitis.

Some people will be able to still do some of these things, some people can’t do any of them. Others can maybe do the activity one day, but no the next. Ankylosing Spondylitis affects each individual differently and is constantly changing.

Please feel free to share this list with friends, family, etc; to help spread awareness. Healthy individuals sometimes struggle to understand the difficulties that their chronic illness friends and family face. I hope that this list will bring light to the situation. It is also my hope that it will bring comfort to those who struggle with any of these activities as they realize they are not alone.

Do you agree with this list? Do you think anything needs to be added? Let me know in the comments!

Gentle hugs to you all. XoXo

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This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.

Does Your Rheumy Work for the Vampires Too?

The Rheumatologist's OfficeWent in for my three-month check-up with the rheumatologist today. Well, saw the nurse practitioner this time, actually. She is always so smiley and upbeat. I try not to judge her for it. I know it sounds bad, but it just makes me think, “You are not actually that happy to see me. You don’t really know me, so… take it down a couple levels.”

Of course, I’m never really in a very good mood by the time I see her, between struggles The Doctor's Scalewith the insurance company, which then turns into struggles with the receptionist, and then seeing my weight when they take me back for the exam. (Can’t I just give you a nice estimation of my weight like I do at the DMV? Haha)

Does everyone have as many troubles with their insurance company as I do? I swear every time I go to the doctor or try to refill prescriptions something is going on with my insurance that hinders whatever I am trying to get done. It’s a conspiracy!

vampire clip artBut I think the real conspiracy lies in the lab at the back of the office where they send me every visit to draw blood. Pretty sure the doctors are working for the vampires.

Now, obviously, I don’t really think that, but sometimes you just have to find a way to laugh through your appointments, especially the blood draws. I have small, deep veins that roll and unfortunately not all phlebotomists can stick me on IMG_2841the first attempt. Them digging around chasing my veins makes me want to pass out sometimes. Thankfully today she was awesome and I barely felt a thing.

The visit was good too. It was nice to say that I didn’t have any pain to complain about, and I’ve been sleeping well, exercising, working regularly. All such a change from my earlier visits where I could barely hobble into the office.

I always feel goofy and awkward when they wiggle my limbs around and poke and prod to check flexibility and sensitivity. Makes me feel like a Marionette.

The best part of my doctor’s visit though is that my Enbrel prescription got called in to Lumicera, so hopefully my delivery will arrive at the beginning of next week. Have to get back on it so that I stay feeling good!

Do you have to go check in with your rheumatologist every three months? What do you like and dislike about your visits? Do you also think your doctors are in cahoots with the vampires? Let me know in the comments!

Gentle hugs and extra spoons to you all! XoXospoonie


My Positive Outlook

Once you replace negative thoughts with positive ones, you’ll start having positive results. – Willie Nelson

positive thinking three

On my Facebook and Instagram I am constantly preaching about “Keeping it positive,” “being kind,” and “spreading love.”

Some might question how it is possible for me to always be positive, to always focus on the good, when I live with a chronic illness and mental disorders. My answer would be that it is only through positive thinking that I manage to make it through life every day.

I could look at my life and say that “My life sucks. My body is literally killing itself. My brain is constantly tricking me into being anxious and depressed.” Or I can choose to see the silver-lining. positive thinking two

Instead of saying, “My life sucks” I can say “I get to wake up and live one more day. I have one more day on this Earth to try to change it for the better.” Instead of saying,” My body is literally killing itself and my brain is trying to trick me into being anxious and depressed,” I can say that “because of my pain and suffering I am more in-tuned with others.” I believe that is the real reason that I have been able to change from a pessimist to someone who believes in the power of positive thinking. I learned how to see my greatest challenge, the loss of my health, as a gift.

I always heard not to judge someone because you never know their struggles, their battles, but it wasn’t until I got sick that I really understood. I know that people don’t look at me and see someone who is sick and has a physical disability. People can’t look at me and see the pain that I suffer every day, because I am good at masking it. They might see my fatigue, but that is easily brushed off as laziness and/or being out of shape. My forgetfulness comes across as a failure to be responsible.

And now because of the judgement I receive from others, from the symptoms I experience, I am now compassionate. I no longer jump to conclusions about people. I no longer grow impatient when someone walks slower or takes longer to perform a task. I can see pain in the eyes of others who battle with invisible illnesses or who may simply be having a bad day.

Through my journey with this disease over the last couple of years I have learned that I can let the disease control me, my emotions, and my thoughts, or I can take control and be positive every day. Does that mean I am positive every day? No. I am not perfect and I do have anxiety and depression, after all. But I do my best to be mindful of the thoughts I put out into positive thinking onethe universe. There is something to be said for the Power of Attraction. The more positive I keep my thoughts the more positivity I see in the world and the easier it is for me to continue to have positive thoughts.

We are all in charge of how we think and feel, so choose positivity. Choose happiness.

 


Chronic Illness Changes You

IMG_2822I’ve always been a caregiver — that’s just who I am. Mothering has been ingrained in me since the days that I used to help care for my brothers, changing their dirty diapers and babysitting. Now I am the one that is being taken care of, and I hate it.

I hate being dependent. I hate being a drain on society and my family. Unable to work or support myself, I have just filed for disability. I’ve worked since I was fifteen, trying to be independent – to be able to buy and pay for things I needed or wanted all by myself. I feel like a failure because I have become dependent. Because I am 30 years old, broke both financially and physically, and being supported by my parents.

Suicide is now something that I contemplate regularly, and it’s not from the pain of the disease or the depression that comes with it, but from the feeling of being a failure. I feel like my life is a waste of my family’s resources. I contribute nothing and take everything. Now, don’t freak out. I won’t actually do it, because I know that it would kill my parents. But, I feel that this is something that many people with chronic illnesses go through and can relate to.

We hate being dependent and needy. We just want to be productive members of our families and of society again like we once were. There is a deep shame that comes with being young and disabled, especially in this day and age when we can see all of our acquaintances conquering the world when we open our social media pages.

Chronic diseases dash all of the hopes and dreams that we once had for ourselves as we watch our bodies crumble and destroy itself from the inside out, and we are no longer able to care for ourselves – as we lose our identity as a caregiver to those in need and instead become the one in need of care.


I Don’t Even Know Myself Any More

I MISS THE PERSON THAT I USED TO BE!!! Prior to becoming symptomatic in May, I was working full-time managing my father’s company, going to school full-time, and when I wasn’t at work or school I was busy writing books. I mean, I was an intelligent, creative, and charismatic woman. Now? It’s like I’m the Scarecrow, Cowardly Lion, and Tin Man rolled into one.wizard of oz I’ve completely lost my brain. I can’t concentrate, remember things, or even formulate the correct words for things 90% of the time. If someone asks me to do something that is more stressful than laundry I have a breakdown. And, well, Tin Man = my lacking range of motion. I’m not working because of constant pain and my failure to even fill out a deposit slip correctly. (Thank God my father is my boss). I’ve had to drop my college classes because I can’t read more than two or three sentences before my brain checks out. And anytime I try to sit down and write it’s like there is this fog between me and that creative place in my brain. What is this? Am I just in so much pain that it is turning me into a dim-witted moron? Is it a side effect of the medication? Is it a symptom of the disease that the doctor forgot to tell me about? …. Ugh, sorry. Rant over. I just hate feeling like on top of everything else that this disease has stolen from me, that it has now taken my brain and personality along with it too.


Is It Grief or Depression? And Why Do I Feel the Need to Put a Name to It?

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For about three months now I have been extremely emotional. More emotional than normal — like I’ve cried more in the last three months than the last two years combined. But I’m not counting the time period that I binge watched Grey’s Anatomy or Game of Thrones or those other feelsy shows, because get real who doesn’t get emotional watching those? I’m talking about REAL crying.

Before I was diagnosed, I just assumed that it was because my pain was out of control and my knee was the size of a grapefruit and I wasn’t sleeping. Well, now my pain is not so high on the painscale, it hurts in more places, but it’s about a six instead of a nine most of the time. So we call that under control, right? I sleep more, still tired all the time, but I don’t experience painsomnia every night.

So, why am I sad all of the time? Why does the littlest thing send my into a crying fit?

Am I grieving over the loss of my health? I think yes, in a way I am, but I don’t know that it explains why I am emotional and find myself becoming overwhelmed and crying about something as stupid as being asked to recall the password for a login at work. I took the day of my diagnosis to allow myself to process and grieve. I went on Pintrest and created a whole board dedicated to my disease. It’s full of inspirational quotes, health information, memes that explain to others what I am experiencing. It was the day of my diagnosis that I decided to begin my glutenfree journey. I took that day to grieve, but also to try to empower myself.

I know that I have depression. I was diagnosed in 2006, but I am on Celexa and have had it under control for a long time now. Is it possible that because of my diagnosis I have become “more” depressed and the meds aren’t working anymore?

Or am I just plain old sad and moody because I don’t feel good, my life has drastically changed, and I am frustrated by the whole damn injustice of having a debilitating disease at the age of thirty? Does it really matter WHAT it is? Yes, yes, I need to know why. I’m that kid, that kid that asks you why an annoying number of times. I need to know what is causing me to cry, and be sad, and overwhelmed, so I can make it stop.

Did any of you experience this emotional weepy reaction prior to and after your diagnosis?

Prayers and Healing Hugs,

XoXo

michellehillstrom