No Tiara Today

I couldn’t get out of bed today but I did. I couldn’t walk on the treadmill but I did. Not because I wanted to but because I needed to push as much as I could.  I did however get in the shower but I could not get dressed without tears of pain. Screaming for my husband to help me my body was frozen in such pain, legs numb and tingling, eyes blurred and hurting. It took thought to make my legs move, it was like my brain was not reaching them. He helped me to the couch slowly each step so excruciating my tears were uncontrollable. His eyes filled up with tears and fear. He gently helps me to the couch wincing as he does- scared he will make it worse. I lay there not because I am lazy but because I can not do anything else. I moved slow throughout the day each step hurts as my foot hits the floor, I can not feel it but the pins and needles remind me it is there. My face tingles to my lips causing me to feel like I am going mad, maybe today I am. The right side is not only numb but tingling so much. My right eye is blurry and aching, I am having floaters all day. The spasms in my leg jerk my body which makes my back pain sting. By the end of the day I am dragging my right leg and needing assistance walking even ten steps. I notice my clothes are on inside out but at least I am dressed. The kids make dinner and the worry sets in their faces. When mom can’t cook she is hurting in a way that scares them.

I work pushing through the pain. Laughing and trying to stay focused yet each breath is a reminder of the hurt while my legs are numb no matter how I sit. Work, pain repeat until I can not take it any more. I must sleep, laying down finding a spot that is not too awful I crash hard to the sound of kids playing, lawn mowers, birds things that usually keep me awake. Not today the pain, numbness, the tingling is overwhelming.  My eye aching and the blurred vision was too much to take today.  Is this how summer is supposed to be, where is my tan? Pain is exhausting, real exhaustion. I was a true spoonie today!

Just because I do not look sick does not mean anything. The pain is so real and intense I wonder why others can not see it. This is not a pity party; this is not searching for sympathy. This is nothing more than the reality of a relapse with MS. This is a day that I may seem fine on the outside yet inside my body it twisted in pain. Today there was no tiara.

Close-up photo of the silver diadem with diamonds on a blue water background. Shallow depth of field added by macro lens for natural view
Close-up photo of the silver diadem with diamonds on a blue water background. Shallow depth of field added by macro lens for natural view

Be Your Own Advocate

The date was February 1st, 2014, a date my husband and I will never forget. I had given birth to our fourth child just four months earlier. We thought it was a healthy pregnancy, despite regular contractions around 25 weeks on. We were on the twelfth hour of being at the hospital, originally checking into the ER as my regular OBGYN advised. Then we moved up to the fourth floor, Labor & Delivery. As I lay on the half bed, my husband watched as I began a never-ending massive hemorrhage — so much, that I nearly lost consciousness. I remember my sight becoming blurred as my hearing faded in and out. The RN ordered a large bucket, then two more to catch the excessively large clots, while still insisting that it was just a “heavy menstrual period.” But uncertainty lay on her face. It indeed was not, and I refused to be discharged to go home and bleed to death.

After earlier tests in the ER and on the second floor, all the doctors and nurses still reassured me I was either miscarrying or newly pregnant. They wanted to discharge me. I refused each time, because deep down I knew there was something wrong. The day prior, my OBGYN did a vaginal ultrasound and we saw the grape-like image on the screen. Something was there.

After I was given oxygen and laid with my head lower than my feet, I was able to regain full consciousness and sit up. It was then another floor doctor had come in and ordered labs for a b-hcg draw. Within 30 minutes, we were facing four various doctors, telling us I had choriocarcinoma from a complete twin molar pregnancy that resulted from our newborn’s undeveloped twin.

What? I only briefly knew of this rare, placental cancer from the book, “What to Expect When You’re Expecting.”

I was admitted late that night after I tried to breastfeed my baby one last time. The rest of the night until early morning consisted of tests, from a CT scan, to an MRI, to a florescent contract glow agent CT.  I was alone and scared.

It was then I was told it hadn’t metastasized to my brain, luckily, but possibly to my right lung. My pregnancy hormone, b-hcg levels were extremely high, over 221,000.

Choriocarcinoma metastasizes from the uterus to the lungs, liver, and finally the brain, very aggressively and fast. It is very responsive to chemotherapy IF caught in time. I was between stage II/III, FIGO Score 6.

A picc-line was inserted the following morning and I was given my first needed blood transfusion in prep for chemo. Everything had happened so fast that it was hard to comprehend it all.

My oncology team believes the choriocarcinoma was fully gestated around 22-27 weeks into my pregnancy, around the same time I began getting regular contractions. The only other symptom was intermittent postpartum bleeding and passing round, flat clots. Other symptoms can include regular pregnancy symptoms, menstrual or pelvic pain, increased or high b-hcg levels, coughing, shortness of breath, dizziness, blurred vision, headaches and even seizures. I had regular pre-natal care and addressed my OBGYN regularly. And still, nothing was detected with exams until four months after giving full term birth.

Which is why I stress, be your own advocate.

I began weekly Methotrexate chemotherapy February 4th, and after four rounds, learned it wasn’t working, due to resistance. My b-hcg levels weren’t dropping quickly enough. I was then put on aggressive “5 agent chemotherapy” known as EMA/CO. I had week after week of infusions, with a total of 12 total rounds. Going through the treatment was very hard. And there were many times I didn’t think I could continue on, looking death in the face. I was neutropenic most of the time (low or no white cells) and we learned to give Neupogen shots at home in my belly. I had many complications, including needing another blood transfusion, getting a UTI, and being rushed to the ER a few times for fever.

After inpatient chemotherapy, I was instructed to not pass on any bodily fluids, like kissing, especially with my newborn, due to my toxicity levels from the chemotherapy. Most of my days were spent sleeping in bed, snuggling my newborn and listening to the noises slipping by of my children and husband.

What is molar pregnancy and placental cancer (choriocarcinoma)? A molar pregnancy results from the disease gestational trophoblastic neoplasia and not all turn malignant like mine did. Basically, the abnormalities begin at fertilization. In a partial molar, two sperm fertilize one egg, leaving an abnormal fetus that will either naturally abort or have to be terminated. In a complete molar, one sperm fertilizes one egg that has missing DNA/chromosomes, thus stopping at the placental formation causing abnormal placental cells. In my case, I had two eggs fertilized; one being our healthy baby girl and the other a complete mole egg. This type of case is rare, especially with our baby surviving. She will be three years old this September and is still healthy.

One key change I would like to see is more awareness. Since my own diagnosis, I’ve been a strong advocate, raising awareness through Facebook support groups, as well as my own Facebook page, Choriocarcinoma & Molar Pregnancy https://m.facebook.com/choriocarcinomaandmolarpregnancy/ and others to further reach the public.

I realize others have not been so fortunate, and try to help their families in any way by providing support for their loss. I’m in contact daily with hundreds of other women, some new cases, each week.

I also advocate and raise funds for Dr. Goldstein’s exclusive Choriocarcinoma Research Fund at Brigham’s in MA https://giving.brighamandwomens.org/choriocarcinoma

I give credit to my oncology team and Dr. Goldstein’s fast acting, life saving treatment, but most of all, to God for sparing me. It was hard to explain to my children, especially my 4-year-old at the time, that I may die, and why all my bodily hair was gone. He was devastated to see my eyelashes and eyebrows fall out. It’s not the easiest to talk of death to young children.

The anxiety of this journey and being away from my children was just unbearable. I also suffered PTSD and became unknowingly dependent on Lorazepam as a result of using it as pre-chemo meds every week. I am now free from these bondages through faith and prayer. I still have the normal “scan-xiety” and fear when a fellow choriocarcinoma sister has recurrence or loses their fight. I am two years cancer-free now and will ne two years chemo-free this July.

I now live with chemotherapy side effects, such as premature menopause, bone pain, low bone density, neuropathy, chemo brain and vision loss, to name a few. I also suffer from nerve damage from the picc-line.

My advice is to listen to your body, regardless of what a doctor may tell you. A simple home pregnancy test can pick up any detected b-hcg levels.

Be your own advocate, because no one else will.

What can you create from your cancer experience?

What can you create from your cancer experience? Or what can you bring to your life as a result of your cancer experience? The results are endless.

Life is so crazy! If I hadn’t had so many life challenges and wasn’t committed to personal development, I wouldn’t have been able to create nearly as much as I did a result of my cancer experience.

My diagnosis came in 2012. Had that diagnosis come ten or fifteen years before that, I think I would have handled my cancer experience so much differently.

In the past I was this people pleasing perfectionist, who wouldn’t let anyone in and wanted everyone to think that I had the perfect life. So not true, because no one has a perfect life. We never know what goes on behind closed doors until we reveal them to ourselves first.

What I am leading to is if I had had my cancer experience long ago, before I opened up myself to others, realizing that we are all the same, I probably would have hid for about a year or two until I was fully healed. I wouldn’t have asked for help, support or exercised self-love and extreme self-care. I wouldn’t have been able to heal mentally and physically in the way that I did in 2012.

Our cancer experience, or any other life experience for that matter, is about opening ourselves up to others and letting them in.

I feel Blessed that at the time I had my cancer diagnosis, I was finally able to be in a place where I was ME. I was myself. I was open and honest and able to expose my vulnerabilities and my deepest truest self.

When I finally swallowed and processed my diagnosis, I was able to reach out to my friends and family and ask for support, reach out to my children’s teachers and ask them to look after my children, talk to my colleagues and tell them to take over for me while I took the time to heal.

By this time in my life I had retrained my brain to weed out all of the false beliefs and chatter that was in my mind, telling myself that I could handle this on my own. Those weren’t my voices, they were the voices of my past.

In opening up myself to others and exposing myself at one of the most vulnerable times of my life, I was able to access love, hope, faith and strength. I stood in awe at all of the love and support that came my way and how I was fully open to receiving it and it helped me created a better me for myself. It allowed me to be open and honest and create sustainable change which had a ripple effect in all areas of my life.

This whole path led me to seizing my dream of helping others help themselves. Shortly after my last surgery I stumbled upon coaching and before I knew it I was in training to become a life coach. Now I have a business called New Beginnings Coaching Services, LLC with a niche in helping survivors and caregivers create New Beginnings in their lives during, through and after cancer.

So I ask you now. What can you create from your cancer experience? What are you hiding from or holding the door closed on? What is blocking you from letting others in? What would it feel like to give up control and let others in?

I could go on and on with the questions. The bottom line is that being open and real allows so much to come into your life. It creates a sense of peace and freedom.

If you are struggling to find your Who and how you can open yourself to letting others in, reach out to me so that we can work in partnership to creating “the more” in yourself and in your life that you have always been yearning for. You already have the answers, you just need a facilitator to help you create awareness and action steps toward your goals.

Visit my website www.newbeginningswithgina.com or email me at gina@newbeginningswithgina.com.

7 Ways that Sacred Bathing Can Support Your Health & Wellness

llewellyn-author-headshot

No water, no life. No blue, no green.

-Sylvia Earle

Bathing has long been said to be good for our physical health. A study in the New England Journal of Medicine showed that diabetes patients who spent thirty minutes in a tub of warm water lowered their blood sugar almost thirteen percent. Japanese research revealed that a ten-minute soak can improve the health of men and women. Bathing is good for the immune system and it decreases stress.

There’s a long history of using bathing medicinally.  The term “balneotherapy” relates to spa treatment, hot baths and natural vapor baths.  Resorts add minerals or essential oils to naturally-occurring hot springs.  Balneotherapy is used for illnesses like arthritis, skin conditions and fibromyalgia. The term “hydrotherapy” is a part of medicine that uses water for pain relief and treatment. It uses the temperature and pressure of water therapeutically, to stimulate blood circulation and treat symptoms. Hydrotherapy often includes water jets, underwater massage and mineral baths or jacuzzis.

Four years ago I was diagnosed with Stage 2 Triple negative breast cancer and I had to go through a lumpectomy, chemotherapy and radiation for 8 months.  This was a challenging period and it brought a few things into clear focus for me: my self-care, my need for continued relaxation and a newfound desire to connect daily to Spirit.  This was challenging as a busy psychologist and mother of two kids under 4 at the time.  At first I could not take hot baths after radiation but after I started to recover, I was able to take regular baths again.

I found that the one place that my husband and kids left me alone, was in the bathroom.  I was able to train them to give me 25 minutes of silence in there.  This became my, ‘me time’ to integrate visualization, prayer, meditation and more.  I developed this daily ritual and came to call it sacred bathing.  This was a regular healing time and dream time.

Today most of us are under chronic stress, especially those of us with chronic illness.  It is so important to take this time out for yourself.  A sacred bath is your spiritual and emotional hygiene.

To create a sacred bath, clear your bathroom of extra clutter, light a candle, put in some Epsom salts, essential oils and an appropriate crystal into your bath water.  You call in Spirit (whether that’s your Higher Self, God, the Goddess or your angels) to receive guidance while in the sacred waters.  Then you make a prayer and state your intention.  You relax in silence, do a specific meditation around your intention and listen for guidance.  Afterwards, you journal about any inspiration you receive.  This normally takes 25 minutes.

Below are 7 ways that taking a sacred bath can help you when you are experiencing chronic illness:

  1. It Connects You to Spirit So that You Feel Supported: When you feel lost or alone it can be helpful to connect to your Spirit and Higher Self. This wise part of you can see the bigger picture.  It moves you beyond your ego and limitations so that you reconnect with your essence and remember that your Spirit is stronger than your body.  This may not be true for everyone but it was very helpful to me.  If I had a difficult surgery it would help me to know that my angels were with me.  You can regularly connect to your Divine team through meditation and prayer.
  2. It Helps You to Be Present: Your sacred bath is a place to just be. In this sacred space you leave the past and future behind.  You don’t have to think about that next doctor’s appointment or procedure.  You can just relax, luxuriate in the essential oils and Epsom salt and surrender to the moment.  When you practice this regularly in your sacred baths it can carry over as a reminder to be really present in each moment, outside the bath too.
  3. It Shifts You from Fear into Love: When you have chronic illness you can spend a lot of time in fear.  When I was undergoing a lumpectomy surgery, chemo and radiation I was often concerned about getting an infection, being tired or in pain.  Each procedure had a variety of complications.  I knew that it wasn’t good for my immune system and mental health to spend a lot of time in worry.  So, taking a sacred bath can be a time to wash all that fear down the drain and focus on soaking up the unconditional love of Spirit.  You can use that time to focus on all the love in your life and what you are grateful for.  Again, this practice can later be carried over into your days as well.
  4. It Shifts You Into Your Healing Nervous System: Often we handle stressors while in our Sympathetic nervous system, which handles “fight or flight.” We prepare for defense, followed by exhaustion. In contrast, our Parasympathetic nervous system rebuilds our body, stimulates digestion and aids physical and emotional healing.  We enter this nervous system when we relax, like when we take a sacred bath.  We can practice making this shift regularly in our sacred bath and then notice which nervous system we are in during our daily lives as well.
  5. It Washes Away Limiting Beliefs, Centering You in A Positive Frame of Mind: We all have fears, limiting beliefs and moods that stop us.  In a sacred bath you picture all that negativity going down the drain, so that you’re only soaking up love around your intention.  This energetic shift often leaves you feeling peaceful and inspired.  This allows you to feel more hopeful instead of focusing on what might go wrong.
  6. It Connects You to Your Body: When we are going through chronic illness often we feel angry at our bodies for inconveniencing us and causing us pain. We may feel disconnected from our bodies and feel like doctors and people are working on them from the outside.  But, no one affects our body more than us.  Your sacred bath is your time to connect to your body and to ask it what it needs and listen for guidance.  Sometimes we don’t make this time to slow down and listen.  You can create regular time to hear and meet your body’s requests for more play, sleep, laughter, nature etcetera.  You can also picture yourself being healthy, radiant and energetic and anchor those feelings in your body.
  7. It lets You Experience Pleasure & Relaxation Instead of Pain: Again, when you are chronically ill you may have to undergo surgeries, shots and painful procedures.  Sometimes you may generalize this and feel like your whole life is about pain. Taking a sacred bath is pleasurable and sacred time for you to love yourself and your life again.  You need to put in time for self-care, for dreaming positive things about your future and to look forward to on a regular basis.

I hope this process that has helped me will also be helpful to you.  Remember that you are the hero/heroine of your story so you need to take good care of yourself and keep moving forward.

My Best in Love,

Paulette

When You Want To Get Something Done, Give It To A Woman

I have always liked the phrase, when you want to get something done, give it to a busy person. While I still believe that to be true, my life has taught me that it is even better if that person is a woman!

This is not going to be about men bashing at all. In fact, I have been fortunate to be surrounded by many smart, powerful and compassionate men in my life. What I believe it comes down to is consciously choosing to surround yourself with inspiring, competent folks.

In October of 2013, I was diagnosed with stage 3 ovarian cancer. As far as cancers goes, it’s not a great one. I mean, none are great, but ovarian does not have a real cure yet. Roughly 21,000 new cases will be diagnosed this year and about 14,000 of these cases result in death. What has changed is the shift from seeing it as a terminal illness to a chronic disease. Doctors do not yet know how to cure it but they are learning how to keep us alive longer.

I went through a CT scan and an ultrasound on a Monday and by Tuesday, my diagnosis was confirmed. Within 24 hours, my girlfriends went to work (along with many men too!). They researched top docs in Chicago, pulled strings and made phone calls. They found friends and family near and far that have lived with ovarian cancer. They tracked the best nutritional regimen for cancer, clothes for chemotherapy comfort, wig shops and dealers. One friend sent me headcovers and made me hats with hair by knitting caps herself. Another friend, kept my house looking beautiful with weekly fresh flowers. They found a woman who lived in my community that could talk me through my initial panic and guide me throughout this terrifying process. They located alternative therapies, massage therapists and support groups. That was all within the first week post diagnosis.

It gets better… Once I received my chemo schedule, a friend of mine put a chemo companion driving schedule together. On and off for 1 year, my friends endured the nearly 3 hour trip to and from the hospital, watched me cry as my port was accessed and managed to make me laugh hard through the worst possible days.

It was very important to me to eat a rather specific diet throughout my treatment. The talented and uber knowledgeable, Susan Taves, of Sweet Casava (www.sweetcassava.com) was hired to cook a few meals a week for me. One of my friends put out an email and in lieu of gifts, the entire community (seriously) donated money to pay for my delicious food.

There is more. Another friend created an email sign up to prepare meals 3 times a week for my sons. Several times a week another busy, talented woman would ring the doorbell around 6 with a seriously delicious meal. I mean like there were no casseroles or frozen dinners for 1 year! My house was filled with a constant flow of amazing, pretty healthy, high quality food. I still feel badly if not all serving dishes and Tupperware have been returned to their rightful owners. If this is you, please feel free to look through my supply.

As a Psychotherapist, professionally, I support and empower women as they navigate very challenging life cycle issues. In some small way, I am honored to give back in any way I can to women experiencing any challenges. To all of you out there in my personal front row, in 1 week you performed with the efficiency and strength of the Israeli army and for that, there will never be enough thank you’s.

It is because of this massive collective of girl power that my dear friend and I were inspired to create our company, Bwell 11 and the Coverage YOU Can Control Philosophy. To all the women out there, we say, who doesn’t want to cover a little something in a bathing suit? We’ve got a great solution, so be sure to check out our products like the Bandtastik™ or Bandiva™ and let us know what you think. They were created by women, who were supported by women, who want to pay it forward and support other women.

Chickballs

100-perks-of-having-cancer

Chickballs

(options given…do em whichever way you like em)

Always try to use organic ingredients when possible

  • 1 (15.5 ounce) can chickpeas, drained and rinsed (or avoid the BPA in the can by cooking your own)
  • 1 cup chopped white mushrooms
  • 2 cloves garlic, minced
  • 2 tablespoons minced fresh parsley
  • 2 tablespoons tomato paste
  • 1 1/2  to 2 tablespoons soy sauce (find a soy sauce without cancer-causing caramel coloring and MSG)
  • 1 ½ tablespoons of organic extra virgin olive oil, plus more for cooking
  • ½ cup dry bread crumbs or use gluten free rice crumbs
  • ½ cup whole wheat flour or chickpea flour for gluten free (if you use the wheat, you can call them wheatballs if that makes you feel better)
  • ¼ cup of nutritional yeast (optional but consider this high protein/non-yeast source that is usually fortified with B12…a vitamin that is essential but is mostly found in animal products,  so vegans should get it when they can. I use Bragg’s, but there are lots of brands out there)
  • 1 teaspoon dried basil
  • 1 teaspoon dried oregano
  • ½ teaspoon paprika
  • ½ teaspoon salt (Season to taste. I found I didn’t need the salt when using the full 2 Tablespoons of soy sauce)
  • ¼ teaspoon black pepper

If cooking the chickpeas, rinse and place in a pot covered with water. Cover and soak overnight (12 hours). Replace water with twice the volume of the chickpeas, and bring to a boil. Lower heat, cover, and simmer 1 hour. Strain and allow to cool.  Cooked chickpeas can be placed in 16-ounce containers and frozen for 3 months (It’s like having a can in your freezer.  I do this with black beans too.)

If using canned make sure you rinse extremely well.

1-in food processor, combine chickpeas, mushrooms, garlic and parsley, and pulse until coarsely ground, but not pureed.  Add the remaining ingredients and pulse to combine.

2-with a spatula, scrape the mixture into a large bowl and knead the mixture until well blended, about 2 minutes.

3-pinch off small pieces of the mixture and roll into one and a half inch balls.

4-in a large skillet, barely cover the bottom with olive oil and cook the chickballs, turning frequently to brown the on all sides, about 5 minutes.

These chickballs freeze well and can be used in any recipe that calls for meatballs.  They also passed the “I’m not eating anything vegan” husband test. He gobbled them up in a flash.

Nutritional info

Makes about 17 balls Nutrition per ball when chick pea flour, rye cracker flour, and nutritional yeast options are used ….Calories: 75, Fat: 2.5, Protein: 4.8, Iron: 4.5% RDA, Fiber: 3.5 grams  Vitamin B12: 13% RDA

Using the gluten free rice crumbs vs the breadcrumbs saves calories and also saves you from the sugars, and preservatives that breadcrumbs contain.  This post is not big enough to list all the ingredients in processed bread crumbs.

Using chick pea flour instead of wheat flour gives you 5 times the protein, more iron, and 3 times the fiber than using wheat flour. These small changes add up and make your healthy diet even healthier!

Nutritional yeast, while it has yeast in it’s name, is not a live yeast product.  It is the shell of the dead yeast cells that contain an abundance of protein and adds a very unique flavor to anything it touches.  Most nutritional yeast products are fortified with B Vitamins including B12…the one that vegans need to supplement in their diet.

From the book “100 Perks of Having Cancer plus 100 Health Tips for Surviving It (Basic Health Publications 2013) www.100PerksOfCancer.com

Sugar and Increased Cancer Risk

Sugar Addicts, Be Aware! Study Finds a Link Between Sugar and an Increased Risk for Breast Cancer

Before you pick up your next Frappuccino or sugary soda, understand that recent studies have linked sugar in Western diets to an increased risk for breast cancer tumors and the spread of cancer from one organ to another body part (metastasis). The Western diet has proven to be a playground for sugar to roam and infiltrate peoples lives. Although it tastes good and helps satisfy our sweet tooth, sugar’s effect on our bodies is detrimental to our health and helps promote the spread of cancer.

Sugar is hidden in almost anything these days. Ranging from ketchup and barbeque sauce to popular yogurt brands, it’s everywhere. Some common food products we have grown to love are loaded with hidden sugars which trigger inflammation in our bodies making it harder to fight off infection. According to researchers in a study done on sugars in western diets at the University of Texas, “we determined that it was specifically fructose, in table sugar and high-fructose corn syrup, that was responsible for facilitating lung metastasis and production in breast tumors” (1). This means to steer clear of soda, processed candies, pastries, and sugary baked goods. The study also suggests that the uptake of dietary sucrose or fructose indicated a “signaling pathway responsible for sugar-promoted tumor growth in mice” (1). Treating yourself once in a while is one thing, however, when the occasional treat turns into a regular occurrence, that is when you have to read labels carefully and be mindful of what you are putting in your body.

What should you avoid? Advertising on food labels can be tricky to decipher on your own. A lot of manufacturers will disguise “sugar” on the back of a product for other tricky names like “invert sugar” and “glucose.” We want to give you a simple list of ingredients to look out for on the back of food labels to make you a pro at reading product labels. Hint hint – anything that ends in “ose” can be assumed to be “sugar.”

  • Cane Crystals
  • Corn Sweetener
  • Corn Syrup
  • Dextrin
  • Evaporated Cane Juice
  • Glucose
  • Malt Syrup
  • Molasses
  • Saccharose
  • Xylose
  • (2)

You can also check out our app “SugarChecked” that scans products to check for your personal dietary sugar and sweetener preferences!

(1)http://www.sciencedaily.com/releases/2016/01/160104080034.htm

(2)http://lowcarbdiets.about.com/od/whattoeat/a/sugars.htm

About ContentChecked: We are a family of three mobile phone applications focused on giving power to the users by allowing them to scan their food labels to discover any hidden food allergen or intolerances (ContentChecked), sugars (SugarChecked) or migraine-triggers (MigraineChecked). Our vision is to provide the go-to source for people seeking to maintain a clean and healthy diet.

 

I am not Cancer, I am MS

I am taking off my Stupid Dumb Breast Cancer tiara to talk about something I hate admitting. I guess starting at the beginning in a condensed form is how it should be done. After being diagnosed with cancer all this other crap kept happening. Numbness all down my right side was just the start then my ear popped and I lost hearing all to be topped with my right eye feeling glassy and blurry. I went to an ENT who let me add tried to send me to an MRI with tissue expanders in, UMMMM really? They told me “You have TMJ – be a good patient and take your muscle relaxer. You are under stress.” No, a sorry lady that was rude, and I do not feel right, it was not just TMJ. I kept falling down because my leg felt “dead,” I felt pins and needles in my body, and my hand was just not working. My migraines increased so it was time to see a neurologist. After many MRI’s and tests, he had a verdict. No, it was not TMJ and I listened as he called the ENT and told her just what he thought of her DX, I really liked this doctor. He explained that my optic nerve was depleting and that I had signs of Optic Neuritis. Come again? I just had cancer can I please not add to it. The reality is that this was a sign of early onset MS, multiple sclerosis. I really did not want to admit this, nor did my husband. But as I watch my body and feel the pain it is clear. I did my research and it seems that breast cancer in some brings MS and other autoimmune diseases to the surface, and in others who already had these it makes them dormant. So my love of high heels and stilettos is now given to my cousin. The pain in my feet is too much to bear in regular shoes let alone 6-inch beauties.

The thing with MS some days are ok, not pain-free but doable. Then there are the days that every step can bring tears to your eyes. That laying in bed you feel every pin, every needle, every muscle ache; sleeping becomes a dream. My back has started to feel a weakening of my spine which probably means that the lesions are now in my spine. Of course, this could be cancer who knows! I will be having an MRI to check but I put it off. Not just because they give me panic attacks, but the reality of the results is something I do not want to know. See my best friend from childhood has MS she was diagnosed a year before me so she is who I lean on-just not the right side as that is her bad side too.

I have found that eating right is as critical to my health as the medicine. Exercising when I can is part of my mental health. The issue here is that when you can not feel your feet yet it is painful to take steps, it makes it so hard. Sometimes the pain is so intense that I think others can see it. I was talking to my friend about how I keep feeling like my back is giving out and I almost fall. She told me to get a cane, I lovingly told her to F#$K Off, I said it in my sweetest voice. Truth is that will be my life soon, that and moving the laundry room upstairs. When and how did I become 89??

Gone are the days of 2-hour workouts between the lymphedema and the MS I get about 45 minutes a day if I am lucky. Gone are the superfly stilettos, they are not worth the pain. Gone are the long nights out, my nerves and body can not take it. I have never been one to say my illness has taught me something, but this has opened my eyes. When people complain of their controllable illness or a cold I say “but that can change.” They can not possibly understand what it is like to wake every day in pain knowing that it will not go away and that it will only get worse. Someday MS will debilitate me to the point that I am in a wheelchair, it could happen tomorrow or in 2 years or 10 years that is what sucks about MS you never know when you will flare up or be “ok.”

Living with a chronic illness brings on physical pain for sure but the mental pain is what I have been coping with lately. Not the “why me” but the “I cannot believe this is happening” and how do you explain this to others who laugh when you fall or say “yeah my feet cramp and fall asleep too just rub them.” You can never understand the pain that is unseen unless you have been there and I would never want anyone to feel this.

Life can change in an instance or over time. It does not matter but dealing with the change can be the challenge. There is no control over my illness and there is no way to know if it will progress faster than it is. But I am controlling how I react to this! I will not lie in bed and ache, I will push through each day pain or until the control is gone. And then I will take in that next change and make it my own. Is there anything else I can do? I mean at least it does not affect my tiara!