This is Catherine. You may have noticed that’s she’s been writing a weekly column on the blog. I love empowering women and find that writing can be a huge tool in that. Catherine has been a friend for the past four years. Lately, she and her family have had some trying times. Furthermore, she’s been suffering from lupus for about 12 years now. I initially interviewed her for one of my weekly Q&A’s (Catherine’s triumphs over lupus and homelessness) a few months ago. In said Q&A, she mentioned that lupus is often seen as the invisible disease because all the pain is internal. On the outside, no one would know Catherine is sick. Furthermore, when Catherine is out and about, she has a smile on her face. Since lupus is invisible, I invited her to make it a little un-invisible through this weekly column. This one is one of her most honest ones yet. 

By Catherine Daniels

I have lupus and I’m homeless. It’s been a long road my family and I have had to travel, but I believe had we not been together as a family, it would have been a lot worse. The stress of homelessness has made dealing with lupus even worse.

When my family and I first became homeless, we would have never thought we would live this way. So you ask what it meant to be homeless? My vision of homelessness consisted of a person who stood at the exit of the highway with a sign saying ” homeless and hungry. Please help me!” Seeing that person always made me mad. Somehow that was the face of homelessness and it was inexcusable! Why would they let themselves go like that? I was exactly the person that judged a book by its cover. But I could not be more wrong.

The faces changed as we became the homeless. I was embarrassed, humiliated and ashamed. Not just because of our situation but because I allowed myself and my family to be judged by others. When the faces of homelessness took on the reflection in the mirror, I noticed others differently. Now I see a family with children and pets. People living day to day trying to survive.

We lived in a minivan for the first two weeks and it was hell. We were washing up in the bathrooms at McDonald’s and using their free wi-fi as a means of communication with available services.  It was like living in a bad dream. The stress was overwhelming and it took my lupus to an all-time low. The stress of being homeless broke my stress levels through the roof and it almost took me out. My husband and son tried to make things as comfortable as possible, though. We were grateful for our friends as they rallied together to help us afford a stay at a motel. We were able to at least stop living in the van.

When you have lupus, anything that affects the nervous system can turn a headache into a full on seizure. I tried to stay calm but it was hard when you did not know where your next meal would come from, or whether or not you would have a roof over your head the next day. Being homeless is exhausting. It seems like every ounce of strength you have is spilled just thinking of ways to get out. While my husband looked for work, my son and I, and our two little dogs stayed behind at the motel waiting.

When we were able to get out of homelessness, we found shelter for a few weeks at a very good friend’s apartment. All of the support from friends was priceless. With my husband being a veteran, we were able get help from SSVF (Supportive Services for Veteran Families) and we were saved for a year. We lived in a very nice home in a beautiful community, but unbeknownst to us we were not out of the woods. It just goes to show you that you should always have a plan B. We were not prepared for what came next. Trusting the people who were there to help was a mistake. The assistance we thought we were going to get ran its course without our knowledge and it put us back on the homeless path. I can honestly say our resources were better the second time around, although it was just as stressful we learned how to adapt.

My personal way of dealing with the stress was to take my medicine, hoping it would dull my pain inside and out. I did not have a way to contribute to getting us out while my husband looked for work and running errands for people in exchange for money. Everyday I worried about if he was desperate enough to do the unspeakable. Fortunately it did not come to that, but worried me just the same. I wondered how people thought of him and what people thought of our son. For a long time my medicine was my escape from my reality.

So that brought us to the current day. Most days I am so tired I can’t get out of the bed. Other days a short walk with the dogs turned into hours of endless pain. My heart breaks when I think of how I used to judge others who were homeless. How could I have been so judgmental? Never again. You never really know a person’s circumstances, so never judge a book by its cover.

A weekly column written by Catherine Daniels about her life with lupus.

If that’s the case, it’s time to get creative.

“Redefine what sex looks like for you as a couple,” Rose says. “Some women tell me they take two Tylenol half an hour before sex, or they have intercourse in the tub or on their sides. When they’re having a flare and can’t stand penetration, they can do more foreplay or oral sex.” – Web Md.

There is no easy way to say it, but lupus tried to kill my marriage. At least it tried to. But being stronger than your condition means you have to think outside the box. Love, sex and lupus can coexist when you’re patient with your body. I have found that creating a relaxing environment works on the mind, body and spirit. In my 24 years with my husband, I have to say that the last 10 have the most creative. Sometimes a relaxing bath can prepare the body and music can sooth the soul.

However studies have found that women who experience more intimacy are overall happier. I found this one interesting:

This study examined whether self-rated physical and emotional intimacy of 74 women with their heterosexual partner, during an illness episode of lupus, was related to their affect and relationship satisfaction. It was predicted that greater intimacy would be related to better psychosocial adjustment. Women who engaged in physically intimate behavior with their partner more often reported greater relationship satisfaction. Women who frequently avoided or who were often the initiators of physical intimacy, however, reported greater negative affect. Concerning emotional intimacy, women who disclosed more information about illness symptoms and women who concealed more information about their symptoms and feelings experienced the highest levels of negative affect. Results identify dilemmas that women with recurrent illness may face when trying to maintain intimacy during illness periods. ¹Department of Psychology, Kent State University, Ohio 44242, USA. jdruley@kentvm.kent.edu

There’s always something with lupus. I don’t know if everyone feels like this, but I am usually waiting for the next shoe to drop. I never thought my love life would suffer, but it did. Lupus is such a selfish condition. When your honey bunny has laid (no pun intended) out the red carpet, and romance is in the air, mean old lupus comes in and crashes the party. Your body aches and it’s hard to be in the mood for love. So what does that mean for your relationship? You have to be creative. Romance and intimacy go hand in hand, even though they are two different things.

“Every human is a sexual being.”

With these words, Iris Zink, B.S.N., M.S.N., a nurse practitioner at the Beals Institute in Lansing, Michigan, and President-elect of the Rheumatology Nurses Society, begins the lecture she gives to health care professionals across the country. The Beals Institute treats people with autoimmune diseases and osteoporosis. In her role there, “I’m known as ‘the sex lady,” she says with a laugh.

Sometimes the sexiest thing can simply be to smile through your pain!

Next week, I plan to write about medication overload!

Catherine is a wife and mother living in Cincinnati. In 2004, she was diagnosed with Lupus, an autoimmune diseases where your white blood cells attack your red blood cells. Your body basically looses it’s line of defense. Lupus is often known as the invisible disease because it manifests itself in ways that aren’t outright and visible. Some days it’s extreme fatigue and other’s it’s extreme pain. Through this weekly column, Catherine hopes to help the world better understand what it means to live life with lupus.

Hi again! Season’s greetings to all. It seems at this time of the year a lot of the attention goes to being grateful for good health, cherishing family and friends, and remembering good times. It can also be incredibly stressful. From shopping to cooking, the kids and visiting relatives, the holidays come with an assortment of unintentional stressors. So what do you do with all of that? There are those who, like myself, fall into a stress attack and breakdown.

Lupus is so not funny, but sometimes you have to laugh to keep from crying. Tis the season to be emotional. That’s what I and many others have to deal with. Just like with anything, sometimes you have to find an outlet the free your emotions and that’s where laughter comes into play. Watching a funny movie and laughing to the point of tears is very liberating. Just to see something out of the window has the capacity to bring about happy feelings that lead to a moment of laughter. It’s like taking a deep breath and letting it out. Instantly you feel a little better.

I don’t consider myself to be a funny person or a comedian, but I have found that sharing stories of my family brings side splitting laughter. Wherever you can find it, laugh, tell a funny story, and laugh at a leaf. Whatever you need, just laugh it out. It works for me and I’m sure it will work for you. I am sharing some jokes I find funny and maybe you will laugh with me. Enjoy!!!!

Taking the seriousness out of lupus makes sense. If you can laugh at it, you can live through it.

• A “good hair day” is when you realize you have some left.
• You make a grocery list so you won’t forget anything, and then forget where you put the list. (On a REALLY bad day, you also forget where the grocery store is!)
• You bathe the lawn, fertilize the dog, and brush the kids.
• You use the smoke detector to tell you when dinner is done.
• You can’t effectively argue with your husband anymore. ~ “I am mad as all heck at you! I just wish I could remember why! DAMMIT!”
• You invent your own “Lupus Language” when typing.
• Your medications take up the entire medicine cabinet.
• Your wardrobe contains mostly sweat pants, stretch pants, T-shirts and a robe that never gets washed because that’s all you wear most days.
• You’re on a first name basis with your doctor and the ER staff.
• You can’t remember if the post-it note telling you to remember to take your pills is from yesterday, and you haven’t taken them today, or it’s one that you just wrote to remind you tomorrow?
• Your husband asks you to go and stir the beans in the kitchen, and finds you brushing your teeth in the bathroom instead.
• You bend over to tie your shoes and wonder, “What else can I accomplish while I’m down here?”
• You find yourself at home, wishing that you were at work, wishing you were at home!
• You call the same person three times in one day to tell them exactly what you told them the first time. –

These are just some ways in which I find laughter in my daily struggle. You can find more at: But You Don’t Look Sick

Laughing has been so beneficial for me. Laughter has such a medicinal purpose. I’m going to leave you with just a few of the benefits here.

Laughing …

• Lowers blood pressure
• Reduces stress hormone levels
• Fun ab workout
• Improves cardiac health
• Boosts T cells
• Triggers the release of endorphins
• Produces a general sense of well-being

Physical Health Benefits

• Boosts immunity
• Lowers stress hormones
• Decreases pain
• Relaxes your muscles
• Prevents heart disease

Mental Health Benefits

• Adds joy and zest to life
• Eases anxiety and fear
• Relieves stress
• Improves mood
• Enhances resilience

Social Benefits:

• Strengthens relationships
• Attracts others to us
• Enhances teamwork
• Helps defuse conflict
• Promotes group bonding

Thanks for laughing with me.

Catherine is a wife and mother living in Cincinnati. In 2004, she was diagnosed with Lupus, an autoimmune diseases where your white blood cells attack your red blood cells. Your body basically looses it’s line of defense. Lupus is often known as the invisible disease because it manifests itself in ways that aren’t outright and visible. Some days it’s extreme fatigue and other’s it’s extreme pain. Through this weekly column, Catherine hopes to help the world better understand what it means to live life with lupus.

Tuesdays we’ve decided to start a new weekly column. Remember me, Catherine? If not, read Catherine’s triumphs over lupus and homelessness. I have been living with lupus since 2004. Lupus is an autoimmune disease where your white blood cells are fighting off your red blood cells. You basically have no protection. Some days you’re really tired, some you’re in a lot of pain and others you feel just fine. With modern medicine, however, people live with lupus for many years. I am one of them. My hope is through this weekly column, I can help the rest of the world better understand the struggle that comes along with lupus.

“You never know how strong you are… until being strong is the only choice you have.”
― Cayla Mills

Living with lupus is …..

I never knew the capacity I had until my life depended on it, as my world was systematically being pulled apart.  It was like nothing I have ever been through. Lupus came charging into my life like bull out of his pen.
My family was equally afflicted by my condition. Living with lupus is a lot like those group treatment programs for whatever abuse that person has. I mean to say that lupus has steps and stages.

Step 1: Bewilderment

Step 2: Confusion

Step 3: Depression

Step 4: Anguish

Step 5: Realization

Step 6: Contemplation

For me, I tend to bounce through the steps, not really staying on one and coming back to others. I would imagine, however, that it looks different for each individual. If you struggle with lupus or know someone who does, I want to leave you with these helpful tidbits: don’t blame yourself, have control over your lupus and don’t let it control you.

Stay tuned next week for humor with lupus style.