30 Things About My Invisible Illness You May Not Know

Welcome to all who are seeing this blog for the first time coming over from the Invisible Illness Awareness Week website! My blog seeks to let sick moms know that they are not alone, as well as educate healthy people about those of us with chronic, invisible illnesses.

Besides answering this year’s topic “What Are You Fighting For?“, the website is also doing a “30 Things About My Invisible Illness You May Not Know” meme.

So here I go:

30 Things About My Invisible Illness You May Not Know:

1. The illness I live with is: I’ve been diagnosed with many such as Lupus, Rheumatoid Arthritis and Diabetes but I am currently fighting bipolar disorder and more specifically, bipolar depression.

2. I was diagnosed with it in the year: 2012, after my suicide attempt.

3. But I had symptoms since: 2011

4. The biggest adjustment I’ve had to make is: Learning to deal with hospitalization for my mental health.

5. Most people assume: That I am crazy and sometimes I think they are right!

6. The hardest part about mornings are: I am on disability so I don’t work. I also suffer from Hypersomnia so I take a pill in the morning to help me get up. Depending on how depressed I am mornings are not too bad for me. I drive my son to school.

7. My favorite medical TV show is: Don’t watch ’em!

8. A gadget I couldn’t live without is: Google Maps, the app!

9. The hardest part about nights are: Actually, the nights are the easiest because I am mentally drained from the day. I also take something to help me sleep. I thank God I’ve made it to bedtime every night!

10. Each day I take 15 pills & vitamins and up to 20 if I’m having a bad day with anxiety. (No comments, please)

11. Regarding alternative treatments I: really don’t believe in them, personally. I honestly feel I need medication.

12. If I had to choose between an invisible illness or visible I would choose: I would still choose an invisible illness so I could protect my privacy.

13. Regarding working and career: I no longer work, I am on disability. I had a good career and was doing well but when I was diagnosed with Lupus I could no longer go on working. I miss it; pretty work clothes, dealing with people, and knowing that I am not able to give my son the opportunities he deserves because I cannot work.

14. People would be surprised to know: That my worst delusion ever was when I thought I was a prophet, ranking right under Jesus Christ in importance!

15. The hardest thing to accept about my new reality has been: That I can’t be the mom that I dreamed I would be.

16. Something I never thought I could do with my illness that I did was: Having chronic illnesses made me feel like I had something to share and so I began to blog.

17. The commercials about my illness: I don’t see any for bipolar, just depression.

18. Something I really miss doing since I was diagnosed is: Being able to go somewhere fun with my son without it being so hard.

19. It was really hard to have to give up: My sanity!

20. A new hobby I have taken up since my diagnosis is: As I mentioned, blogging.

21. If I could have one day of feeling normal again I would: Take my son to the beach or to a fair without feeling like I am forcing myself to go.

22. My illness has taught me: That there are so many out there like me and that so many people have it worse than I do.

23. Want to know a secret? One thing people say that gets under my skin is: When I am depressed, when people say that I should just let myself be happy.

24. But I love it when people: When I meet someone and I am comfortable enough to share that I have bipolar disorder and they have a story about them, a relative or a friend who has mental illness as well. It is important to get a dialog going.

25. My favorite motto, scripture, quote that gets me through tough times is: I’m not sure where this is from but it talks about Eeyore from Winnie the Pooh: “One awesome thing about Eeyore is that even though he is basically clinically depressed, he still gets invited to participate in adventures and shenanigans with all of his friends And they never expect him to pretend to feel happy, they just love him anyway, and they never leave him behind or ask him to change.”

26. When someone is diagnosed I’d like to tell them: That there is help and hope and that medical science is researching for the answers, and that we’ve come so far already.

27. Something that has surprised me about living with an illness is: You realize who your true friends and family are.

28. The nicest thing someone did for me when I wasn’t feeling well was: My friend and her husband cleaned my house, another friend made a big meal for my family.

29. I’m involved with Invisible Illness Week because: I think it is a great way to educate well people about people with chronic, invisible diseases.

30. The fact that you read this list makes me feel: that you are truly interested in learning how to accept people with mental illness.

The Thing I Can’t Change

This post was inspired by Mama Kat’s Writer’s Workshop.

Prompt 2. If there was one thing you could change about yourself, what would it be? Why can’t it change?

If I could change anything about myself it would be my mental health. My problems began shortly after I had Tyler and since then I have never been able to get a grip on my brain.

On January 24th, 2012 I attempted suicide. While in the hospital I was diagnosed with Bipolar Disorder. I was hospitalized for two weeks with Intensive Outpatient Therapy to follow. For months I remained depressed with Suicidal Ideation which is fantasizing about suicide.

I had a few months of feeling pretty well when we moved to Ohio and then I started cycling towards Mania. This was right around the time Grant and I split up, December of 2012. I credit my hypomanic state for giving me the courage to leave my marriage, but eventually I went Manic and had to be hospitalized.

Tyler stayed with Grant while I was in the hospital. Being paranoid is part of my mania and I thought Grant would use my mental illness to sue me for custody of Tyler. I felt like I was imprisoned during my hospitalization, I couldn’t wait to get my son back. I didn’t understand that the doctors were trying to make me better. Thank God I had my new boyfriend, Jacques, coming to visit me.

I stayed in the hospital for two weeks and felt better but the medication made me zombie-like and foggy and soon caused me to be depressed. I felt like I was moving through molasses. About a month after being released from the hospital for mania, I went in again for depression. Another two week stay and I was released feeling no better. Tyler was staying with Grant because I didn’t feel functional enough to take care of him.

I started to get better and went back to having partial custody of Tyler. I always felt depressed, although I was able to take care of Tyler. Jacques helped out by doing the cooking and cleaning for me.

This isn’t the post for me to write about what being in a psychiatric hospital is like but I will say that for me, they can be scary places. Rubber rooms, padded cells, straightjackets, shots to calm you down if you are out of control…they have them all, although I have never needed them. Seeing people worse off than you can be scary as well.

My last manic episode was this past May. I had been put on Ritalin in the hopes of clearing up my brain fog and mania is a possible side effect. I got off the drug pretty quickly because I started having symptoms. My paranoia was back and I had a huge fight with Jacques, accusing him of making me sick. One day I felt faint and was having chest pains. I couldn’t breathe so I called 9-1-1. I was alone and scared to death.

When I got to the hospital I had a full-on manic episode. I was hooked up to the heart monitor and I had an auditory hallucination that it had stopped beeping and made the steady sound like I was dead. But I was still moving around. In my delusion I felt that I had died and was a prophet, kind of like Jesus. (Damn, but I am a crazy bitch aren’t I?) Religious delusions are actually quite common in mania. I’m not quite sure what I said in the emergency room, what was real, what was in my head, but I told the doctors and nurses that I had died and death was painless.

I obviously got sent to the hospital. I was still very deluded and so this stay was a peaceful one. I saw signs of Jesus all around me, like in the graffiti. I thought all the patients, doctors and nurses around me were either angels or devils. I was smart enough to keep these thoughts to myself. I stayed in the hospital again for two weeks, but mostly to monitor my physical conditions because I had also been diagnosed with diabetes and asthma.

When I got released, Jacques picked me up and my delusion went away.

Since then I’ve been on the depressed side, not suicidal, not thinking about it in any way but just struggling.

Every time I get out of the hospital I say that this time will be my last but I can’t say that for sure. I don’t know if I will ever feel balanced again. I know that some people can live normal lives with bipolar but that hasn’t been my experience. In the meantime I just take my medicines, go to therapy and hope that there will be a better course of treatment for me.

bipolar_by_anasoriano-d5a0zan

Photo credit: anasoriano

New Year’s Resolutions

Normally I don’t make New Year’s resolutions with the thought that I’m probably going to break them all within the first few weeks anyway and I am just setting myself up to fail. But this year I’m going to strive for a better 2015.

So here in no particular order are my New Year’s Resolutions:

1. Exercise/Lose Weight

This resolution will be particularly challenging. I am still on the medication that has made me gain the weight and I have been too depressed to go to the gym, even though I have free membership. It’s hard to get off the couch sometimes, much less put on work-out clothes and get there. But I realize that if I can just make it there a few times I can get into a habit and will feel less depressed and in better health. I’ve been pain free for many months now, my tiredness is due to being out of shape, not to any disease.

2. Better Mental Health

Maybe it’s just not possible for me to live a life that is either manic or depressed but I want to try. I’m light years ahead of where I was back in January of 2012 when I attempted suicide but I’ve been struggling with depression for many months. I have an appointment with my psychiatrist next week and I’m going to ask to try a different anti-depressant.

3. Declare Bankruptcy or Debt Consolidation

This has been something that Grant and I have needed to do since we lived in New Jersey but life has been so chaotic we’ve never been able to get our acts together. Things have calmed down and it’s time to do the right thing. I used to have a great credit rating but years of catastrophic illness between a husband and a wife can wreck that fast.

4. Get a Divorce/Dissolution

Yes, I am still married to Grant although we haven’t been together since December of 2012. As you know, our separation has been amicable so we haven’t felt a real rush to make it official, and Jacques has been very easy going about it. It’s lead to some awkward situations though. People in Ohio don’t take kindly to a woman having a husband and a boyfriend.

What are your New Year’s Resolutions?

new-year-2015-wishes-messages-300x194

Photo credit: http://happynewyear2015greetings.com/happy-new-year-2015-text-messages-and-sms/

Light Box?

The increasingly darkening days have led me into greater depression in winters past. That, and the fact that Northeastern Ohio has very few sunny days in the winter have me thinking about SAD or Seasonal Affective Disorder.

Some people brush it off as the Winter Blues but experts say SAD really exists. According to the Mayo Clinic website, Seasonal Affective Disorder is a subtype of depression that comes and goes based on seasons. Symptoms specific to winter SAD include irritability, tiredness or low energy, appetite changes, especially a craving for foods higher in carbohydrates, and a heavy leaden feeling in the legs or arms.

Risk factors include being female, age (younger people are more at risk for SAD than older people), and having clinical or bipolar (me) depression.

Treatment for SAD includes medication and light therapy, the latter of which I am interested in. In Light Therapy, “you sit a few feet from a special light therapy box so that you are exposed to bright light. Light therapy mimics natural outdoor light and appears to cause a change in brain chemicals linked to mood. It generally starts working in a few days to two weeks and causes few side effects.”

The problem for me is the cost. The boxes and lamps cost $200 and up, not exactly in my budget. But is it worth it to get out from under my winter depression?

Do you have a light therapy box or lamp? Has it worked for you?

FLAMlit-500x500

If I Could Have Done Things Differently…

Inspired by Mama Kat’s Writer’s Workshop.

Writer's Workshop

2.) You HAVE to go back in time and choose a different career path for yourself. What do you choose?

This is a question I have asked myself many times. In my mind I do go back in time, chose something different and then flash forward as to where I would be right now.

“What do you want to be when you grow up?”, they would ask me, and I would say “I want to be a singer!” and later, “I want to be an actress!”

When I was nine and living in the suburbs, the broadway musical Annie was holding open auditions. That meant you did not need an agent to audition, you could just be any little girl and they would listen to you sing.

At nine I was taking singing lessons and singing wherever I could; at farmers’ markets with pianos, at talent shows and at my cousin’s wedding. I would get standing ovations and when I went to the bathroom I was greeted with compliments about how good a singer I was.

I begged my parents to let me audition for Annie, I pleaded with them. I felt sure that while I was not good enough to be Annie, I could probably be one of the orphans. My mother said that she didn’t want me live the Hollywood life, where children grew up too early. But this is Broadway, I said.

But she had the last word on that decision.

In high school I went to a Performing Arts School. Kind of like “Fame”, although we didn’t break into song in the locker room. I wanted to go to college and major in theatre, somewhere like NYU, that was my dream school.

But my SAT scores were so low, none of the schools I had wanted would look at me. I went to Seton Hall University where I did sixteen plays in the four years I was there and sung in the choirs.

I majored in Communications and concentrated on television and radio. At my radio station I was giving a job anchoring the news right away. Some of my classmates had me act in their television projects.

“You should go into television!”, many people told me. But I didn’t think I was beautiful enough to be on t.v. Sure, I was pretty but the people on television were all beautiful.

I did well in radio; I was an on-air personality for eight years until I got totally disillusioned with the business and quit in 2000. Up until 2012 I did voice-overs. It was a very nice side job, until I became too sick to do it any more.

I guess you could say I made a lot of wrong decisions, and just maybe, I may have sung or acted professionally, or maybe I would have wound up on network news.

But no matter what, I still would have gotten Lupus, become Bipolar and Diabetic and I would have had to quit whatever it was I was doing.

My agenda is different now anyway. I don’t need to be those things any more. I just want to write about what it’s like to be chronically ill and how it feels to have Lupus and be mentally ill.

I guess my new dream is to get the word out to as many people as possible. I guess I would like to live long enough that my name becomes…well, not a household name…but a name people will think of that furthered the causes of the chronically ill and disabled.

I’m only 44, so maybe my dream is closer than I think. I hope you will help by spreading the word too.