Tag Archives: breast cancer

How We Support Various Illnesses (Hint: not equally)

22 Friday Dec 2017

Posted by in caregivers, mental illness, schizophrenia, Uncategorized

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For most of 2017, I had to struggle to accept the fact that I might have breast cancer. (I have one final test in February, but everything is finally looking good and that I mostly like don’t have it). All the anxiously waiting for results during that time forced me to look at the treatments for breast cancer and prepare myself for the worst. I read about lumpectomies, chemo., radiation, and various other therapies. I know women who have gone through all of these things. I read the stories of writers. I was nervous. I was anxious. I was scared, but one thing I knew for certain was that some things would be much easier with cancer than schizophrenia.

If I receive the diagnosis of breast cancer, I can expect food from friends, and our church family. I can expect that people will send cards and flowers, and call me, and contact me regularly on social media. Not only that, I can expect to see millions of people buy pink ribbons, wear t-shirts, post a pink ribbon on social media, walk in 5-K races and write checks to the Susan B Komen Foundation. (I discovered this charity is not always popular among survivors because of the reportedly high salaries of top executives). Nonetheless, I would see people from everywhere in the country rally around the illness I was facing. I would also have many women to talk to who have been through it; I know at least a dozen.

Schizophrenia is a lonely disease. There is a Schizophrenia Awareness day, but hardly anyone mentions it (the past one, I think I saw two or three references to it on social media). It doesn’t get put on Facebook’s radar like cancer. At certain times a year, you can choose a pink ribbon banner for your profile. On those days, Facebook is awash in pink. There are also games women play on Facebook to raise cancer awareness. They secretly send each other messages and ask what color of bra the recipient of the message is wearing and ask her to post that color, without explanation as a status update (there are variations of this game). (Activists have criticized these games, created to raise awareness, for allowing people to believe they are doing something to wipe out or educate about cancer when in reality, writing a check supporting research or education is far more productive and helpful).

There are hundreds of ways to show support for breast cancer (not that it makes it any less terrifying or the treatments any easier), but it does do one thing, it makes a person feel important – the struggle is real and the struggle matters to millions of people.

With schizophrenia, there is the illness and all that entails. There is the toll that that illness takes on the person who has it, and on their loved ones, and then added or piled on top of that is the struggle to be seen or heard, or taken seriously or cared for – none of those things are a given. Families often have to fight for their loved ones, and it may very well be that they feel as if they are the only ones fighting.

I know that when I was psychotic the last time (for six whole months), my husband was on his own. He had to work his way through a maze of illness by himself without any support. I have read many family stories of people desperately trying to get their loved one treatment but running into problems and roadblocks time and time again. There are few, if any, safety nets. There are no public campaigns that get wide spread attention and support.

We are not a huge group, but our numbers are significant. Those with schizophrenia are some of the most forgotten and vulnerable in our society. Having this illness can feel like you are floating in a small rubber boat in a vast ocean.

If you can raise awareness, if you can send a friend or family a card, or make a phone call, please do it. The isolation, grief, and loneliness can be overwhelming, and your concern and compassion can be the fuel that keeps people doing all they can to survive, or help a loved one do so.

From Breast Cancer to Social Anxiety, Social Media can Help

02 Saturday Dec 2017

Posted by in mental illness, schizophrenia, Uncategorized

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I have frequently written about social media – people curating the “perfect life” on Instagram and Facebook, ganging up on people on Twiter, and of course, the mind-numbing time suck it can be. I have also written about my love of social media. Snapchat has added so much humor and connection to my life and is a positive addition to my days.

Of course, I have written that social media can be a savior to those of us who isolate socially, or are homebound, or have social anxiety. But there is something I found out this week that made me realize why I spend so much time reading the posts of others on social media – I find people with similar experiences to me.

I have written a little about the fact that while I am going through my breast cancer scare (that has lasted almost a year now) that I have found comfort, information, and support by reading about women in all different phases of breast cancer. Some of those women recently diagnosed, some in the midst of radiation or chemo, some survivors for over ten years. I have read story after story and followed some people’s journey all the way from diagnosis to their final treatment. I have learned about all the emotions that go into a cancer diagnosis, a mastectomy, hair loss, the thoughts of mortality, the fear, the sadness, the brain fog, etc. And on the other side, I have seen comments by hundreds of women, who like me, have had long drawn out tests that ended up being negative. I feel educated about this topic by a group of women across the globe.  I can’t say how much this has comforted and kept me sane during this process (my next test is on Dec. 13th.)

It hasn’t only been breast cancer, though. Earlier in the week, I read a post from a woman asking for suggestions on how to get through her anxiety. She wrote that she couldn’t tell the difference between excitement and fear/anxiety and her upcoming trip to Spain was causing her problems. What? I thought I was the only person on the planet that hated to be excited because I can’t distinguish that feeling from negative feelings. Excitement makes me nervous, anxious, shaky, uncomfortable and scared.

There are also the people I have met on social media who have schizophrenia. I can read what they post every day, and the things that they like and are concerned about and what they are doing with their time. Knowing other people with schizophrenia, and getting to experience bits and pieces of their lives, helps me feel less alone and not so different in the world. The people I have met on social media with schizophrenia are like me – they read, they socialize, they grocery shop, they have pets, and they do average and “normal” things. See, I’m not an exception, or an anomaly, I am like so many other people who experience symptoms every day but go about living a full life.

For all my complaints about social media, I think the benefits; I gain from it far out weight any criticism I have of it. If something can educate, comfort, support, and help you feel a sense of belonging and community,  that is not a bad thing. And it is all at my fingertips twenty-four hours a day – you can’t beat that, doctors and therapists don’t keep those hours, and I get every bit as much from social media without the office hours or co-pays.

 

 

 

Finding Comfort: People Sharing

29 Friday Sep 2017

Posted by in mental illness, schizophrenia, Uncategorized

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In the blog I wrote yesterday, I mentioned my breast cancer scare. One thing that has helped me so much since the discovery of the lump in my left breast and all the ensuing appointments, procedures, and tests along with the painful wait to hear results, is reading about other women’s journey with cancer on social media.

For well over six months I have followed one woman while she had a mastectomy, went through radiation and chemotherapy, and recently went through reconstructive surgery. She is currently looking into places to get a tattoo placed over her scars. Every day during her ordeal she has posted about the details of what she is going through (“chemo brain” and other things). She also posts a daily gratitude list. Her list had included things as simple as soft t-shirts and foods that she could taste even when the chemotherapy was destroying her ability to enjoy eating most everything.

I follow another woman named, Kathy, and she started her ordeal with an abnormal mammogram back in June. I followed her through ultrasounds, a biopsy, positive test results (positive for cancer, not positive in a good way), a lumpectomy, and radiation treatments. She writes an essay every day that she titles, “The Moment of Goodness Despite the News,” or something very close to that. She is currently struggling with the whirlwind of appointments, treatments, procedures, etc. she just finished. She thought when she had finished the radiation treatments her life would go back to exactly how it was before, but that isn’t how it is going for her.

I can’t tell you how much these two women have, and are continuing to, help me. By sharing their experiences on social media, I discovered what most of the treatment options would be for me if any of my tests came back positive for cancer. I found out that if the cancer was detected early enough, a lumpectomy was an option instead of a mastectomy. I learned that some women took a pill for ten years instead of radiation or chemotherapy. I discovered that some women had radiation while others, had both radiation and chemotherapy.  And all of this knowledge, all of this sharing of life experience comforted and educated me. It took some of the fear away. One of the reasons so much of the fear left me was because I felt I grew to know these women and if they could get through the trauma, stress, and difficulty of breast cancer, it was possible for me to get through it as well.

There are so many negative things we can say about social media. There is so much to dislike about our technology-filled lives. But there are incredible benefits and comforts to be found there as well. What I am hoping for with all the time I have spent and will spend on this blog, is that it comforts at least a few people about mental illness in some way.

If I can say that I have made even one person’s life a little easier, it has all been worthwhile. Consider it my thank you to God and the Universe for giving me this one glorious, painful, beautiful, difficult, astonishing, life.

My best to each and every one of you.

 

 

Going for Gold – A Positive Attitude

28 Thursday Sep 2017

Posted by in hope, mental illness, schizophenia, Uncategorized

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For those of you who are friends with me on Facebook, you can just skip over this post because you probably have read most of it before.

This year, I had, well I guess realistically I am still in the midst of, a breast cancer scare. For four and a half months, I went through mammograms, ultrasounds, an MRI and two biopsies (the doctors are going to begin testing again in six months because they couldn’t completely rule out cancer). I think for most people this would be challenging, but for someone like me, who is overly anxious every time there is the involvement of a doctor, it can be more than tough. I get so anxious around doctor’s that the last time I was in the emergency room, they were not going to let me go home because they couldn’t get my pulse below one hundred. My pulse always runs high, but it can go as high as 150 at the doctor’s office.

Anyway, it has been a stressful year. During the stress of appointments, the possibility of cancer and all the treatments that would require, my husband had one health issue after another. He has an autoimmune disease, so his immune system is weaker than most of us. This year he had mono, two bouts of tonsillitis, a sinus infection and a virus that itched like wild and covered his whole body with circular sores except for his face, hands, and feet. (He just started breaking out with it again).

Well, during all of this I had to find a way to deal with the possibility that I might have cancer. I thought about chemo, radiation, surgery, etc. I also thought about dying. Eventually, at least on most days, I was able to get my thoughts to focus on the fact that I am almost 52 years old. That is not young. I am not ancient, but I have lived a pretty full and in some ways fantastic life. I have traveled to Egypt, Isreal, Cyprus, many countries in Europe and South America. I have a college degree and still take classes to further my education on a regular basis. And most importantly, I married the love of my life and had almost twenty years with him – twenty years spent with the person you love most on the planet. I realized that I couldn’t complain about the life I have lived even if it involves breast cancer.

My health up to this point has been relatively good. I have had many opportunities. I have never been hungry. I have never had to live without shelter. I have never lost anyone I love to violence or war. Compare this to the stories around the country and especially around the world, and you can easily see what I mean. Also, if I do have cancer, I have health care and a team of doctors that are perfectly capable of providing me with excellent care and treatment.

I can’t say that I am always this positive. I have my days, and to be honest, I have only reached this level of acceptance and gratitude around my health. The next thing I have to tackle is how I feel about my husband’s health because even if he cuts his finger, I have a near breakdown. I worry endlessly about him, his happiness, his health, his whole life.

So, don’t think I have this positive attitude thing covered. In some ways I do, and in other ways, I have a long way to go, but every negative thought conquered is a battle I have won, and I’ll take all my wins and collect them like pieces of gold.

For those of us with a mental illness, we need a treasure chest full of that kind of gold to keep us going. I have a few more pieces now, and that is something that makes me richer – no one can complain about that!

Tough Stuff

18 Friday Sep 2015

Posted by in articles I wrote, caregivers, mental illness, schizophrenia, writing

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This is the blog of a caregiver whose twenty-one year old son has schizophrenia. I love following this blog because the woman who writes it, writes well, posts some interesting research on schizophrenia, and has a very different perspective than my own.

Her post yesterday (the one I linked to above) made me feel a wide range of emotions. I felt angry at her for suggesting her son’s life wasn’t of value without her there to make sure he was okay (I know she is worried that her son will not be understood, cared for, and that life might be cruel to him without her, but as someone who also lives with the disease her son does, this was a difficult read).

Then I thought about myself. How many nights, with my head resting on my husband’s chest, have I whispered, “Please tell me that I will die before you. I just want to go before you.”  My husband’s response is always the same when I say this, “You are so selfish. Why do you think I would do better than you, if I were left alone?”  Usually, I give him the reasons I think he would do better, but to be honest, if I knew I was dying a couple years in advance, I would spend the time I had left trying to find him a partner. I really don’t want either one of us to be left alone. It would be hard to lose your best friend, especially a best friend you spend every day with and curl up with at night.

I frequently think and talk about death. Here is an article I wrote (under my maiden name) about my second experience with a breast cancer scare (to my friends who have actually had breast cancer, I hope you will forgive me for writing about how freaked out I get just thinking I have it).

I don’t know what life would be like for that blogger’s son if she dies before him. I don’t know what life would be like for me if my husband passes before me. I know I want to believe that in both situations everything, given enough time, would somehow, and in some way, be okay.

It is a difficult situation to try and grapple with. The thing about having a mental illness is you can’t always choose what you’ll spend your time thinking about. It’s not just me though I bet every caregiver has run similar scenarios through their mind.

There is tough stuff and there is really tough stuff. This whole topic is the latter. Having the thought that your loved one might be better off to die before you, is probably a common and guilt inducing thought for many caregivers. Just know you can say it out loud in certain places no matter how terrible it sounds. I have schizophrenia and I am capable of being honest about what life would look like without my muscle man, my Hercules, my Superman, my love. I’m not sure I’d be able to do it.

I don’t know. I just don’t know.