Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Who I Am

I am a 37 year old woman in Ohio.  I enjoy sewing, knitting, playing with/being the servant to my cats, and reading.  I have a master's degree in occupational therapy and have worked in nursing homes, home health and long-term psychiatric facilities over the years. Since August 2011 I have been on disability.
I was diagnosed with bipolar disorder in 2002 although I was symptomatic for years before that.  A combination of an odd presentation and skill at hiding symptoms delayed my diagnosis until I was 26.  The next several years were challenging as I proved to be medication resistant and allergic to numerous medications.  As time passed it became clear that I had a severe form of bipolar including mixed episodes (mania and depression at the same time) and very rapid cycling.  In my case I can cycle as often as every 3 minutes based on my therapist's calculations.  This blog started in 2006, on my 30th birthday, and initially I anticipated an abstract blog discussing how I was managing life with this illness.  Soon after the blog began I became more ill than I had been to date and over the next few months it evolved into what it is now, a sometimes painfully honest story of my life with bipolar, PTSD and other anxiety disorders.  It was not until 2007 that we succeeded in decreasing the severity of my symptoms and slowing my cycling.  In 2008 a new version of Seroquel, called Seroquel XR, was released.  I started taking it before it was even readily available in pharmacies and it rapidly changed my life.  I was able to come off of sedating medications, lost 60 pounds, and felt good for the first time in my life.  I began to sleep more normally; I had always had severe insomnia.  In November of 2009 I switched to Emsam, an MAOI antidepressant that changed my life even more drastically.  Within 6 weeks of starting it I was diagnosed as "in remission" for the first time ever.  I started to sleep on a pattern, from 10 PM to 4 AM daily.  It was strange but it worked and for the first time in my adult life I had time for hobbies.
I began working as an OT in 2001. By 2006 I knew that it was likely that I would not be able to do this forever. In September of that year I wrote in a blog post that I would be fortunate if I was still working in 5 years. I made it 4 years and 11 months before I became permanently disabled. However most of my career was both wonderful and a fight to keep going. I was on disability numerous times, including twice for extended periods and I was fired from 2 jobs. I changed jobs frequently in a frantic bid to find something that worked for me. In the end I did find that and I couldn't have asked for a better place to work for the final months of my career. I had a number of health issues in the fall of 2010 and into 2011. I caught whooping cough and was very sick and it took months to control the asthma and other issues that developed from this. I also was having menstrual cycle issues and a great deal of pain. I had to stop working a few weeks prior to a planned surgery to evaluate/treat these issues in August 2011 due to needing pain meds that I couldn't take and drive. The surgery was my turning point. Because I am on an MAOI, a med that is very dangerous if given in conjunction with many drugs, there was a great deal of additional planning for my surgery. We don't know what happened precisely. The most likely scenario is that a drug called Reglan was given for nausea after the surgery. Reglan can cause some pretty serious side effects including a movement disorder called akasthesia. Akasthesia is torment. You are not able to be still. I'd had it before but this was much more severe. For several weeks we tried to sedate it out of me but ultimately it required a week in the psychiatric unit to control it. The agitation went away but my memory was gone and my moods never stabilized. I tried to go back to work but it only lasted 4 days before my supervisors asked me to stay off longer. I fought to make it back for several more months before I accepted that I was not going to be able to work again. I applied for SSDI in February of 2012 and was approved in April 2012. As of this writing, June 2013 I remain seriously affected by depression or mixed episodes nearly 100% of the time. Treatment became difficult in 2011 when I ran out of antipsychotics that I both can take and haven't tried. I have fought a long battle with suicidal thoughts but so far have won that battle. I have recently moved in with my mother while waiting for a garage apartment to be built for me on her property. I hope to be able to participate in some type of group activity once I am settled because I don't get out much and my mom and I are trying to do things as well.
Depending on my mood this blog varies from very serious to occasionally light-hearted.  It is my journal, my memory, the source of some wonderful friends, and my heart.  It is where I think my way through things.  I am often blunt and I try to be extremely open about living with mental illness.  I also write about child abuse, childhood sexual abuse, family relationships and how those are affected by my illness, and anything else that comes up in my life.  I welcome respectful discussion of anything with the caveat that I have the right to stop discussions that I feel unable to handle.  After a serious of nasty comments from anonymous I have decided to delete nasty comments (not ones that disagree, those that are mean) upon receipt.  I have been amazed at the respectful way nearly everyone on this blog has addressed very sensitive topics.

Just Me Jen:  Initially the blog was kept very anonymous and I wrote under the name Just Me.  After seeing a friend's son experience stigma at 9 years of age I decided that part of the problem that allows stigma is that not enough people are open about mental illness.  At that time I made a point of decreasing my anonymity while maintaining professionalism.

Dr. Mind:  My psychologist since a few weeks after the blog began.  He has helped me through many of the hardest aspects of my life and has believed in me when almost nobody else did. He is firm and blunt and requires me to work hard and together we've made my life look like my dream goal of "normal", at least for a while. Now we work to help me stay alive and safe and deal with my grief over losing my home to this illness (I can't manage alone).

Dr. Brain:  My psychiatrist of 11 years.  She is amazing and seems to know through intuition how to best treat me.  If she had not keeping systematically trying one med after another and listened to my concerns and requests and how I felt a med was impacting me I would never have worked this long or had the life that I have had.  She is a  marvel with meds and is just as willing to hold me while I cry as she is to hand out scripts.  She has spent enormous amounts of time with me as opposed to prior psychiatrists who wrote me off or ignored me. When Dr. Mind made her aware of my suicidal/self-harm thinking that has dominated my life lately she spent 2 hours talking to me and holding me while I cried. She is speical.

Dr. Body:  My family doctor.  He is very invested in helping me feel as good as possible while being frustratingly restricted by my allergies and meds I can't take.  I went to him when he was new out of residency and asked him if he was willing to work with me, never judge me, and be willing to accept that my psychiatrist has overruling power over anything other doctors do but that she would happily help him learn about me.  He agreed and while he finds it frustrating that he can keep me alive but rarely offer much comfort because of restrictions he is consistently ready to jump in and help me, including spending hours trying to find a pulmonologist willing to treat me and then giving the pulmonologist both a phone call of information and 3 typed pages of history and hints when we couldn't find anyone to treat my asthma.

My mother;  enough said.  Sometimes she really gets it and sometimes she really doesn't.

Anne:  A pseudonum I use for my niece who is one of the great loves of my life.  Since I've been so sick I do not see her nearly enough.  She is an amazing little girl who at  17 months expressed that she is a toddler, not a baby.  I never knew I could love anyone like I love her. Geraldine: A pseudonym for my new niece who is due in August 2013. There is a gossamer thing relationship between those 2 names but it is probably so fragile only I can see it. If you think you get it post a comment but please don't give away the name of Anne who you might guess. Geraldine's name is well, bizarre and i'm not worried that you'll guess it.

1 comment:

Jen said...

I just want to say that Julia has sent me here:) I have a six year old with bipolar and our world has been upside down for a very long time. He has been in a psych hospital over the summer, that I thought my heart would come out of me to leave him there. Thank you for the "realness" you offer. It is so very hard, and so hard to make people understand. Especially since he is so little...but I have hope. Thank you