All Dark, No Stars

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It’s 2:30 AM on a Tuesday. I awake to my pain calling me, always wanting my constant attention. Then I reach for my medications as I have a thousand times before. I gulp two down with a sip of water. I grab my iPad, and hit “next” on the current You Tube Channel, which is supposed to be compiled of Dateline episodes. A 20/20 episode comes on. It’s about Robin Williams. I’ve successfully avoided watching this episode since his death. You see, not only was I a fan: I too have a secret like he did. I’m in pain.
I’m not talking about the physical pain that woke me up. I wish that was the extent of it. I’m talking about the mental anguish and darkness that has accompanied me along this journey as a person who became chronically ill.

From those who suffer from other illnesses that cause physical stress and pain, there is a ridiculously high percentage of that suffer from emotional turmoil. Whether this comes in the form of Clinical Depression, mood disorders like Bipolar I or II, or a general sense of overwhelming sadness that is classified under another title, it is a a weight most of us carry around like a ton of bricks on our shoulders. Suffering so much is exhausting. It is a vicious cycle. I have Chronic Pain and Cervical Dystonia, which includes painful muscle spasms in my neck, shoulders, and other areas of my body. When I experience pain that cannot be managed with my medications and other therapies, the light becomes dark. The pain intensifies and the darkest sky becomes more bleak. So bleak that I can’t see that stars.

For a while, I never saw the stars. I had just finished my undergraduate degree, was still living in San Francisco, and my health was in rapid decline despite all the specialists I saw and medications I took. I was severely under treated for my chronic pain and other conditions. I was diagnosed with Depression by a Therapist I saw a year or so previous to finishing school. I look back and think that I suffered so needlessly. How can a doctor simply not treat me and leave me to suffer? Did they not believe me? At the time, I was struggling to find work in my chosen field: Interior Design. I was deluded into thinking I could “suck it up” and work full time. I bounced from job to job. One of my jobs at the time essentially fired me due to my disabilities, while gossip ensued at another because I hadn’t received any breaks and had fainted. Being marginalized due to my health was one of the most traumatic experiences that I have ever gone through. I was extremely unstable. When I look back on this year, I can safely say I barely functioned. I lost a lot of weight. I slept too much, slept some more, and then not at all. I barely ate. My whole world was watching TV in silence. I remember that the situation became so dire that I would no longer leave my apartment for days at a time. My boyfriend would physically have to get me dressed and drag me out of the apartment with silent tears streaming down my face.

When I think about this year, I don’t remember much if not anything at all. I sometimes ask my boyfriend questions about that time. Mostly, I don’t want to know. An image that sticks out in my mind is sitting in the squeaky plaid grandma chair looking at the bent and dusty off-white blinds that are closed tight. It’s late afternoon and little light pours into the apartment on O’Farrell Street. The carpet is stained and we have a sofa that looks as if it doesn’t belong. Maybe I don’t belong here either. It’s a bleak existence in what is one of the most interesting and culturally diverse cities in the world. Thinking about that time makes me unequivocally sad. I choose to believe that I don’t remember much because it’s my mind’s way of protecting me.

When I learned of Robin Williams’ death and struggles, I immediately thought back to my time without the stars. I read about his private pain and struggle with depression and was transported back to that bleak existence. I thought about how much pain he must have been in. I thought about how much pain I too have been in. I thought about all the pain I am in still. I cried. I laughed. I had conversations with family and friends about why Robin Williams’ story was so close to our hearts. I asked if they understood Depression and the type of pain that drove Williams’ to end his life. The answer I got was that what he did was cowardly. He took the easy way out. It wasn’t fair to the rest of us. Didn’t he have a duty to keep making us laugh was the overwhelming thought portrayed by media.

You see, a few years ago I was diagnosed as having Bipolar II Disorder, which is a mood disorder defined by hypomanic or episodes where I’m “on”: speaking quickly, not sleeping many hours, being extremely productive, and having delusions of grandeur. On the other side, I have depressive episodes where I’m “off”: I sleep to avoid things, don’t eat, loose weight, and loose zest for life. Some artists hate being medicated and even try to put themselves in a hypomanic state because they find they are extremely creative, productive, and love the “high”. I, however, hate it. I want to be somewhere in the middle. I want to simply be “me”. I want to be calm without being depressed and exited without being hypomanic.

For some reason, I understood why Williams’ had taken his own life long before the reports about his additional health issues had come out. I didn’t judge him for what he had done. I didn’t glamorize it either. I simply felt such a strong connection to him. He was constantly “on” or “off”, much like I was when I was first diagnosed with my Bipolar II Disorder. He had lived much of his life in the Bay Area, and so had I. I had lived in San Francisco for 8 years-thats 8 out of my then 26 years on this earth. On a day to day basis, I put a smile on my face and use the healing power of laughter to cover up the pain. I pretended like everything is a-okay.

These days, I’m more likely to be honest about how I’m really doing. I exercise 3 to 5 times a week in an effort to live in the light. I eat very healthfully because I find that I function better with the right fuel my body needs. I drink a lot of water. I wholeheartedly attempt to get an adequate amount of sleep. I reach out to a mental health professional, one of my support groups, my boyfriend, a friend or write in my journal when I need to vent. I allow myself to feel however I am feeling. I ask for help. I read. I write. I take deep breaths. I visit my loved ones. I learn and try something new. I know when to take a break. When I’m tired, I lay down. I nap. I advocate for myself. I stretch. I do something nice for someone else. I relax. I am learning how not to suffer. I’m unlearning the pain. I stress less. I am mentally well.

Yes, I’m Bipolar II and I’m well. I see stars.

If you are having thoughts of Suicide, please call the National Suicide Prevention Lifeline 24 hours a day, 365 days a year: 1-800-273-8255 or head to your nearest Emergency Room.

If you suspect you are suffering from a mental illness, visit the National Alliance on Mental Illness (NAMI) at NAMI.org, or call your health care provider.

Lone Wolf

What’s the real truth about what it’s like to be chronically ill? No sugar coating anything here.
It’s extremely lonely and isolating.
Let me elaborate. Let’s say I feel great. I’m invited to an event later on in the week. On the Facebook group post, I click that I’m going. Days pass. The day of the event arrives and I’m just too tired to cook a dish, make a ugly sweater, wrap a present and put on a happy face like everything is dandy. In fact, I’m in agony and can barely even get out of bed. I end up alone in my room. My day consists of resting, eating, sleeping, going to the bathroom, taking a bath, and resting more. I’m isolated from the rest of the healthy world.
Let’s say for kicks that I felt fine to do everything I needed to prep, then go to the event. What do I talk about? Do I talk about the frustration of being put on a medication just to get off another medication? Do I talk about the utter exhaustion I feel or that I feel like a monster truck ran over me 5 times? Then when I do say something, I get talked over and ignored. If I have a glass of wine at said party, someone usually asks, “are you even supposed to be drinking, you know, with the medication you are on?” and inside I am pissed but on the outside I have to remain calm and I reply that it has been cleared by my doctor. Is it any of your business? Let me answer that for you: NO! Then for some reason someone always “jokes” and takes jabs at me. Then I end up welling up with tears in my eyes because I literally can’t handle anything else right now. I can’t handle any more negativity, ill will, or pain. I manage to keep my composure and slip to the bathroom for a few deep breaths, but I’m totally falling apart. Someone actually asks how I’m doing. I respond and they listen for the first minute until they start listening and participating in another conversation and don’t even remember asking me the question in the first place. It makes me feel like they don’t care. 
Honestly, I haven’t been to many social occasions lately. I’m talking months. You want to know the real reason why? I’m sick of playing this song and dance. I’m sick of others not expressing they genuinely care. I’m tired of not getting the support I need. I’ve found that my friends simply don’t get it and I don’t think they ever will. I’m not sorry that my chronic illnesses make you uncomfortable. One day you will experience a constant ache and maybe you will think of me. I hope you will wince at the support, love and encouragement you didn’t give me. I hope you think about all the times you judged me or make me feel less than. Less then a women. Less then a human. Less than all that I am. 
To make matters worse, I don’t always get invited to everything. Maybe everyone assumes I’m sick. This really makes me extremely sad. It’s difficult seeing photos of all your friends at an event and all I can think is that I was forgotten. Not even a text. Not a message. No phone call. Nothing. I try to put it out of my mind, but I can’t help but look at all those photos piling up with one thing in common: I’m not in them. 
Enough is enough. No more pretending. If I’m not feeling well, I’m going to tell you so. Too bad. I have no time for making myself fit into a group that I seem more like the odd puzzle piece out. I’m like the equivalent of the manufacturers defect puzzle piece. 
I want to have friends that I can have an honest conversation with. I want friends who simply listen and not judge me. I want to have friends I can relate to and that try to relate to me. I want to have friends who share similar experiences as I do. I want friends who tackle the same stressors like: how many specialists can one really have, balancing exercise and chronic pain, and how to be productive when you simply don’t feel your best. I want friends who support my advocacy work and even read up on my conditions. 
For now, I will enjoy being lonely snuggled in my bed with a glass of wine thank you very much.  

Althernative therapies: Reiki

First of all, Reiki basically is healing energy done by yourself or another person. I have been going to a Reiki circle every Monday night for quite a few months. The Reiki circle is a community of individuals who either are interested in Reiki or practice Reiki and want to formally incorporate it into their own lives on a weekly basis. I realized that, after a month or two, there was something to the Reiki. So, I set to find out more. I read Reiki for Dummies and I decided that this is something I want to learn for myself. You can do Reiki to more than just yourself: you can do it to pets, medications, food, buildings, and even at a distance. At the end of October, my dad and I went to a workshop where we both received Reiki level I and level II certification. 
After I completed the certification, I was astounded how my energy flowed when I gave myself Reiki. I was hooked. My boyfriend John recently visited for halloween and I gave his Reiki. He fell asleep and asks me to sent distant Reiki all the time. At the risk of sounding hippy-ish, I think the reasons why so many love this is because we don’t get enough positive touch or positive energy in our everyday lives. When I do Reiki, my intention is pure love and I know others can feel it. Even our family cat loves it!                                                       
My dad frequently wakes up in the middle of the night. Now when he does, he gives himself Reiki and falls right back asleep. I’ve done it at night for a while, although I have a lot more issues with sleep, I find it very helpful. 

Have you ever heard of or tried Reiki? I want to know!

XOXO,

Whitney

Paleo Progress

So, I’ve been eating Paleo for 15 days. I made some adjustments. I added in oats in the morning, which is against Paleo. Again, I wanted to make this something I could stick to for the rest of my life. I’m not seeing drastic results because I already was eating pretty healthfully before. I feel like I’m getting in control of my health for the first time in my life. I’ve only lost 3lbs, but looking forward to slowly getting back to a size I’m comfortable with, which is only 10lbs away from my current weight. For the next 15 days, I’m going to commit to having oats every once in a while and being grain free most of the time. The reason I didn’t give up grains up completely is because my nutritionist cautioned me that I could develop sensitivities to it if I cut all gains from my diet. Plus, I was starving. The oats mitigated that. Now, I’ve gotten creative with my meals. I’m eating more vegetables than I ever have been. 
I’ve come to realize that I’ve had a life-long addition to sugar and desserts. For the past 15 days, I’ve cut down my sugar to only an apple a day, the occasional berry smoothie, and dark chocolate at night. Some days are better than others. I had 5 pieces of chocolate last night instead of just one. Today is a new day and I’m getting rid of all my chocolate except for the fancy stuff. Baby steps. For the next 15 days, I’m buckling down. I also don’t plan on baking anything ‘paleo’ that is grain free and sweetened with honey. Yep, honey counts too! I’m taking cutting off sugar cold turkey. I will allow myself fruits, but limit them. I didn’t even have dessert on my birthday. I’m not sure if I can give up dark chocolate, which the Paleo diet allows some of occasionally. I’m going to push myself to further reduce my red wine consumption. I went from 2 glasses a day to 1 or 1/2 a glass.

I’ve started working out 3 times a week. No excuses. Even if I’m in pain or I’m tired, I workout. I’ve noticed that it makes me feel better. It also has make me mentally stronger to handle my medical issues. I found workouts I can do at home and using my own body weight. No halloween candy for me! Actually, that chocolate isn’t up to par for me anyway. 

The Paleo Diet or, as I like to call it, the everything-free diet

In recent months I’ve begun experimenting with my diet to understand the link between the way I eat and my chronic health issues. I went Dairy-Free, except for goat cheeses and grass-fed butter. By doing this, I discovered I have an allergy to dairy. I started to show symptoms with goat cheese, so no more cheese for me. I know, you must think I’m crazy for giving up Brie, yogurt, milk, and ice cream. Haagen-Daaz Double Chocolate Ice Cream, I will forever mourn you! Instead I found coconut milk ice cream. It turns out I can eat a whole pint of this no problem. So, that became off-limits. During this time, I was also experimenting with going Gluten-Free then adding it back in to see if I had any symptoms. Well, I didn’t feel any ill-effects from adding it back in. Then a very wise friend of mine suggested I keep at it. So, Gluten-Free I became. I bought special bread, special oatmeal, and special pasta. I also decided to limit my sugar intake. I went from 160mg-200mg of sugar to 40mg from fruit. All was fine and dandy. I ate my Gluten-Free bread slathered with almond butter, bananas, and cinnamon every morning. 
Then, I started gaining weight. I needed to gain a few pounds, but not 15 extra pounds. So, I was looking for a lifestyle that would focus on limiting inflammation as much as possible while also adding an exercise plan that I could actually do. I wanted to be Grain-Free, Dairy-Free, Soy-Free, Sugar-Free (plus no added sugars), Processed Foods-Free, Corn-Free, Peanut-Free, and Dessert-Free (except for a piece of dark chocolate). I’m sure I’m forgetting a few other things. Why am I doing this to myself? Well, I want to live life as fully as possible. I’m sick and tired of being sick and tired. My pain management physician recently told me that I really have no other treatment options other than the medications I’m currently taking and seeing if surgery for my degenerative neck is a viable option. Surgery is a scary option because there are no guarantees. I might even have more pain! As for the medications, I hate taking them. I hate how they make me feel and I hate the side effects. Most of all, I hate that I have to rely on them. As I shared before, my wish is to have a better quality of life and live pain free. I need a change and fast!

After a bit of research online, I found the Paleo Diet. When I first heard of the Paleo Diet, I only remember that you couldn’t have peanut butter and I thought I could never do that! Well, I’ve been peanut-free for a few months and after reading up on the benefits, it seems like Paleo is the way to go. It perfectly fit with the type of intense anti-inflammatory lifestyle that I wanted to lead. I’m going to give it a solid try for 30 days and watch the results. The only exceptions I’ve made are: I am allowed a glass of wine a day (with skipping some nights, others have 1/2 or 1/4 of a glass), I’m still eating legumes, and I’m allowing myself a piece of dark chocolate. Pretty much, the diet centers on eating proteins and healthy fats at every meal. No grains, no dairy, no processed foods, no sugar. Only grass-fed meats. The only exception to dairy is that you can have a bit of grass-fed butter.

Today is day 3 and it is going well. I accidentally bought the ‘Original’ Cashew Milk, which has sugar and I went so far as to replace it with the unsweetened version. I also did a 4 1/2 mile hike today with the support of my boyfriend, John, for the first time in years. My neck started hurting and spasming like crazy 20 minutes in, which is when I would normally stop. I did something differently today: I kept going. And you know what? The pain and spasming subsided! After about an hour in, there was no more pain. I call that a success. I can’t wait to see how else my health can improve!

So, let me know what you think? Have you tried to change the way you eat to help with a health issue? Has exercise helped you through a health crisis? Sound off in the comments below! All of you dystonia friends, I would appreciate your imput along with your diagnosis.

Much Love,

Whitney

Pain Spike

I’ve been going through a pain spike ever since I got facet injections (steroid) shots. I wanted to share some things that help me recover quickly and get back to living life!

  1. Go through denile. Try to “suck it up” and continue life as normal for a while. After you do this for a while, it’s time to STOP and take care of yourself!
  2. Cancel all your commitments for the week
  3. Call your Doctor. Hopefully, you have built a good relationship with your doctor where they listen and really hear you when you say it’s bad.
  4. Treat your self. I bought a few things. A dress, a belt, and a purse. I eat lots of chocolate.
  5. Lay down. Watch mindless TV or binge on your favorite sitcom.
  6. Ignore phone calls. I don’t know about you, but when I feel like crud, I don’t feel like talking.
  7. Repeat any steps as necessary.
  8. Go slowly when getting back into normal life. Example: on your fist day back, just do a half day.

What tips would you suggest when you are going through a flare up?