My Journey With:

Ehlers-Danlos Syndrome Hypermobility Type (H-EDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Epilepsy ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar type I ~ Migraines ~ Keratosis Pilaris (KP) ~ Eczema ~ Bruxism ~ Irritable Bowel Syndrome (IBS) ~ Post-Traumatic Stress Disorder (PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Hashimoto's Disease (Autoimmune Hypothyroid) ~ Seasonal Affective Disorder (SAD)

Sunday, November 29, 2015

Pinched or irritated nerve in shoulder

Shoulder Pain
I've got either a pinched nerve in my shoulder, or an irritated one. This is the first day I've been able to use my right arm in awhile, and even then I haven't been able to use it much. That means this won't be a long entry, as I'm right handed and having to type with only my left hand. The pain is especially bad when I move my fingers, or move my arm away from my body. The pain comes shooting down from the top of my shoulder where my bra strap would be, to the end of my fingertips. It's a sharp, burning, shooting pain, so that made me suspect that it may be a pinched or irritated nerve. DH, my knight in shining  armor, surprised me with another TENS unit. I'll put pictures of that up sometime soon. I saw my rheumy last week and the appointment went well. I will also fill you in on that as soon as I can. 

Tuesday, November 24, 2015

New Year's Resolution starting early this year

My cane
My cane
It may not be December yet, but I already know my New Year's Resolution. I want to be off my walker and only need a cane by December 31, 2016. This would be a big deal to me, not only making it easier to go places, but my self-esteem would really go up. I usually am fine with my looks (I like my face, but not by stomach), but using a walker in my mid-thirties is a huge blow to my self-esteem. I really hope that I can fulfill this resolution. I have fulfilled New Year's Resolutions before, so I'm pretty sure I can stick with this. I'll never be able to get rid of my EDS or bipolar, but I can make my EDS less painful. I believe that I can do this goal. I'm going to try to blog more, so I can keep you updated on my progress.

I took a nap earlier and can't seem to wake up all the way from it. I keep nodding off. When I napped on the couch Niki crawled on top of me and slept on me. It was the cutest, sweetest thing!

Katya and Mommy
Katya and Mommy
My pain levels have been bearable the last few days, which I'm very, very thankful for. I haven't had a dislocation in quite awhile; that's another thing I'm thankful for. I got an Icy Hot TENS unit. TENS stands for transcutaneous electrical nerve stimulation, it sends small electrical currents out that result in pain relief. It's used on the back, for back pain relief. You can get TENS units from the doctor, but this one DH got me at the grocery store. I'm not sure if prescription ones help more or not, but so far the Icy Hot one is doing well. The biggest draw backs so far are that I can't wear a bra and wear the TENS unit on my upper back, it's really hard to turn it on or change levels when it's in certain areas of my back because you have to push the buttons hard. The biggest issue I see, though, is that battery life is really short. The first day I used it was the day before yesterday afternoon, and by evening the next day it needed a new battery. DH bought a few of them from Dollar General. I haven't used my TENS unit today, because my upper back is where I need it the most and I want to wear a bra. I'm going to ask my rheumy next appointment if she can prescribe one. It said if you put it on your neck it can cause your throat to swell shut, and if you put it on your chest it can cause a fatal heart murmur. That doesn't sound like much fun, so I'll stick to my back.

Monday, November 9, 2015

Solemn Anniversary of Kristallnacht

Today was the solemn anniversary of Kristallnacht in 1938 Germany, also called the “Night of Broken Glass.” 30,000 Jewish men were arrested and sent to concentration camps, and those who weren't were terrified for their lives.  Around 100 Jewish people were murdered.  Kristallnacht marked the start of the violence against the Jewish people that would lead to the death of six million Jewish people during World War II.  Thousands of Jewish shops were destroyed that night, and it wasn't long afterward that Hitler unveiled the "Final Solution" to kill all Jewish people.

I wish many blessings to those affected by the Holocaust and their descendants, both living and dead, and the struggles the Jewish people still face everyday as a result of antisemitism.

Kristallnacht, 1938 Germany
Kristallnacht, 1938 Germany

Kristallnacht, 1938 Germany
Kristallnacht, 1938 Germany

Kristallnacht, 1938 Germany
Kristallnacht, 1938 Germany

Kristallnacht, 1938 Germany
Kristallnacht, 1938 Germany

Sunday, October 11, 2015

BBT and TTC (Basal Body Temperature and Trying to Conceive)

I'm watching "Bones" and Bones and Booth just had their daughter, Christine.  While it makes me smile and warms my heart to see people happy, even if it is on TV, I can't help but feel a bit sad that I'm not a mommy yet.  I was taking my Basal Body Temperature (BBT) at 7:30 am every morning, but I found out it doesn't work for me because of my frequent insomnia.  It's very important to get your BBT every morning at the same time, after sleeping at least three hours.  Before you take your BBT you can't talk, and have to move as little as possible, so getting up to go pee in the three hours before you take your temperature means you can't use any data from that day.  Your BBT is the lowest temperature of your body that day.  It measures to the hundredth of a degree, instead of the normal thermometers that just measure to the tenth of a degree.

You chart, either by hand or with an app, your BBT each day to find the day you ovulate.  Every single point on the chart matters, as a very small change in temperature can indicate that you ovulated.  About three days out of every week my insomnia keeps me from sleeping, so I was getting on average only four readings a week.  That made my effort in charting BBT fruitless, so I decided to stop charting.  Since I've decided to stop charting my anxiety levels have decreased drastically, and my insomnia has actually gotten a little better because I'm not stressing so hard about having to fall asleep by a certain time so I can take my temp.  Even my mornings are less stressful.  I also feel free to read later than when I was taking my BBT.  One of my favorite times of day is when I'm reading late at night with DH sleeping next to me and Niki snoring above his head.  It's even better if Katya is in bed, too.  I often feel peaceful then, and very protective of DH while he sleeps.  The house is still and quiet, and the energy is usually one of stillness and peace.  I've never been a daytime reader, but at night I love reading.  We have our own personal library, because we both love reading so much.  DH reads during the day, and like I said, I'm a nighttime reader.  I'm looking forward already to the book I'm reading tonight, Under the Udala Trees: A Novel by Chinelo Okparanta.

Friday, October 2, 2015

30 Things About My Invisible Illness You May Not Know: Seasonal Affective Disorder (SAD)

This is Invisible Illness Awareness Week 2015, which I just found out about today, by reading an IIAW blog entry on bipolar.  Previously I have  blogged about IIAW, in 2013 I covered PTSD, and bipolar in 2011.

While I have many invisible illnesses, the one I'm going to talk about today is Seasonal Affective Disorder (SAD).  I've always thought the acronym SAD was pretty annoying, since it deals with depression.  SAD causes a person to be depressed in the winter months when there is less light, and if you're bipolar it often causes mania in the spring when the hours of daylight increase.  SAD is very common among people with mood disorders.  Mood disorders include: bipolar, depression, dysthymia, and cyclothymia.  SAD most commonly occurs in areas that have longer winters, like Alaska, northern Canada, and Siberia.  The most common treatments for SAD are antidepressants and light box treatment.  A light box is, like it sounds, a very brightly lit box that the person with SAD sits in front of.  My light box is 10,000 lux.  I sit in front of it in the morning and at dusk.

Me - on the left I'm happy, on the right I've been crying from depression and am very depressed from my SAD setting in.

1. The illness I live with is: 
Many, including Ehlers-Danlos Syndrome Hypermobility Type (H-EDS), Postural Orthostatic Tachycardia Syndrome (POTS), Epilepsy, Fibromyalgia, Chronic Myofascial Pain (CMP), Polycystic Ovarian Syndrome (PCOS), TMJ Dysfunction, Bipolar type I, Migraines, Irritable Bowel Syndrome (IBS), Complex--Post-Traumatic Stress Disorder (C-PTSD), Panic Disorder, Generalized Anxiety Disorder (GAD), Social Anxiety Disorder (SAD), Hashimoto's Disease (Autoimmune Hypothyroid), and Seasonal Affective Disorder (SAD).

2. I was diagnosed with it in the year:2001

3. But I had symptoms since:I was 10 when symptoms started.

4. The biggest adjustment I’ve had to make is:Remembering to do my light box.  When we have visitors and I'm supposed to do my light box I get really embarrassed, as I feel I'm putting a sign on my back that says "mentally ill."  When that happens I usually won't use my light box.  The light box works best when you do it in the early morning and again at dusk.  I have frequent insomnia, so a lot of the time I'm too sleepy to wake up in the morning, because I just fell asleep.  For instance, last night I couldn't sleep until after 6 a.m., so when I finally fell asleep I slept for eight hours straight.  I even turned off my alarm in my sleep, and when DH tried to wake me he couldn't.  So I didn't get to do my morning light box time, and at dusk we had company, so I was too embarrassed to use it.

5. Most people assume:That taking an antidepressant will make you "normal" again.  It often takes a combination of medicine, light therapy, and/or therapy to keep it under control in the dark part of the year.

6. The hardest part about mornings are:Getting out of bed when I'm depressed and lonely.  It's also, as I mentioned above, difficult to do my light box in the mornings (as well as the evenings).

7. My favorite medical TV show is:I haven't seen it in many years, but I guess it would be "Scrubs," because it's so funny.

8. A gadget I couldn’t live without is:A computer/Kindle/phone that can get access the website MoodScope.  On MoodScope I track my depression by picking an answer on each of 20 cards.  It really helps me to recognize what components of depression I'm having problems with and my overall depression levels over time on a graph.

9. The hardest part about nights are:Nighttime is when I'm the most depressed, and often cry myself to sleep when I'm depressed, like I did last night.

10. Each day I take __ pills & vitamins. (No comments, please)38 currently.

11. Regarding alternative treatments I:I meditate, and that helps sometimes.  I've thought about trying binaural beats as well.

12. If I had to choose between an invisible illness or visible I would choose:Invisible, definitely.  People may not realize how much I'm suffering when you can't visually see my disabilities, but I'm glad I still look "normal."

13. Regarding working and career:I am disabled and on disability for my bipolar.

14. People would be surprised to know:How much depression can affect every aspect of your life: sleep, energy, mood, crying, fatigue, anxiety, panic attacks, not able to function, sex, self-esteem, weight gain or loss, and many other issues.

15. The hardest thing to accept about my new reality has been:It's not so much a new reality, since I've been dealing with it since I was 10. That means the majority of my life, 24 out of 34 years, I've dealt with this.

16. Something I never thought I could do with my illness that I did was:Exercise.  It's hard enough to exercise when you're in a lot of pain, but when you're also depressed it's like climbing a mountain.  When I exercise while depressed I am very proud of myself.

17. The commercials about my illness:I've never seen a commercial for SAD.

18. Something I really miss doing since I was diagnosed is:This isn't applicable, since I've had SAD the majority of my life.

19. It was really hard to have to give up:Sleep so I can do my light box when I often don't fall asleep until early morning from insomnia.  That makes it very hard to wake up.

20. A new hobby I have taken up since my diagnosis is:Crochet.  I'm not good at it and I get frustrated easily, but it's fun.

21. If I could have one day of feeling normal again I would:Spend the whole day outside interacting with nature.

22. My illness has taught me:That sometimes we have no idea how much someone else is struggling.

23. Want to know a secret? One thing people say that gets under my skin is:"Pull yourself up by your bootstraps."  That's not possible with mental illness, if it was that easy no  one would be disabled by it.

24. But I love it when people:Don't make me feel weird about using my light box, and/or show interest in learning about SAD. 

25. My favorite motto, scripture, quote that gets me through tough times is:"'Cause tomorrow's another day
I'm thirsty anyway
so bring on the rain"
~Jo Dee Messina

26. When someone is diagnosed I’d like to tell them:There is hope.  While SAD is often a lifelong condition, there are ways to live with it.

27. Something that has surprised me about living with an illness is:How little people care or want to understand.

28. The nicest thing someone did for me when I wasn’t feeling well was:DH brought me the neighbors' puppy from next door when I was too depressed to get out of bed the first winter we were together.  It was so sweet and touched my heard so much.

29. I’m involved with Invisible Illness Week because:I think it's important for people to know that SAD can be manageable.  I also feel that bringing awareness to this illness will help others understand people with SAD and help more people who have SAD be diagnosed.

30. The fact that you read this list makes me feel:
Appreciative!  Thank you very much for taking time out of your day to learn about SAD.

Saturday, September 5, 2015

Serial killer? I think not.

Lately I've been watching "Dexter," which is a Showtime series about a man named Dexter who is a serial killer. He's a sociopath, but he only kills murderers.  He has no emotions, but knows how to fake them. He does form human attachments with only a few people in the world, like to his foster sister or foster dad. He works in the forensic department at the police station, so pretty much knows exactly how to avoid ever getting caught.  It made me think, if any one of us were born without emotions, including fear or guilt, plus you had the high chance of never getting caught, how would you turn out? More specifically, how would I turn out?  The medical term for a sociopath or a psychopath, is anti-social personality disorder.  Let me be clear, not everyone with anti-social personality disorder breaks the law, much less murders people.  What would I be like if I could get away with murder and felt no guilt?  Would I still be a disabled woman in a small town who doesn't break the law like I am now?  Would I be close to who I am now? Would I still want to be a mom? Would I become like Dexter in the show and turn into a serial killer?
 Would I turn into a bank robber, arsonist, or heroine dealer?  I would hope that even without guilt or fear, and knowing I have a good chance of not being caught, I'd still be me, not Dexter.  It's a question that's been weighing on my mind since the first episode I watched of "Dexter."  I know it doesn't matter whether I'd be the same or not, since I don't have anti-social personality disorder, but it's still a thought I can't seem to let go of.  I wouldn't have bipolar disorder anymore, having no emotions is the exact opposite of living with bipolar disorder where your emotions are too much, so that's another question to ponder.  Maybe I just think too much, and internalized the show a just a bit too much.

Friday, September 4, 2015

September is PCOS Awareness Month

September is PCOS Awareness Month. But what is PCOS?

Polycystic Ovarian Syndrome (PCOS) is the most common endocrine disorder among female-bodied people. It affects one in ten female-bodied persons. It's often mistaken for a reproductive disorder, but it isn't. In fact, while most PCOS patients have polycystic ovaries, not all do. Also, there are people with polycystic ovaries that do not have PCOS. That's why there is a huge push to change the name of PCOS, because it is a misnomer. While 5% to 10% of female-bodied people have PCOS, they are often misdiagnosed, or told to go to a psychiatrist for their physical and depressive issues.

The diagnosis criteria are not agreed upon, and right now there are three different diagnostic classification systems: the NIH Criteria, the Rotterdam Criteria, and the Androgen Excess and PCOS Society Criteria.

The NIH Criteria, created in 1990, means a female-bodied person must have all of the following symptoms for a diagnosis of PCOS.
1) oligoovulation, meaning infrequent or irregular ovulation.
2) signs of the male hormone androgen in excess (clinical or biochemical)
3) exclusion of other disorders that can result in menstrual irregularity and hyperandrogenism (androgen excess)

The Rotterdam Criteria was established in 2003, and a female-bodied person needs to have at least two of the following three criteria:
1) oligoovulation and/or anovulation (infrequent or irregular ovulation and/or no ovulation)
2) excess androgen activity
3) polycystic ovaries (by gynecologic ultrasound)
Other entities are excluded that would cause these.

To meet the Androgen Excess PCOS Society, in 2006, came up with criteria in which a female-bodied person has to have every symptom to make the diagnosis of PCOS:
1) excess androgen activity
2) oligoovulation/anovulation and/or polycystic ovaries
3) exclusion of other entities that would cause excess androgen activity

This doesn't mean that these are the only symptoms of PCOS. PCOS is a complex syndrome with no clear cause. Here is a list of some of the more common PCOS symptoms:
  • High blood pressure
  • Insulin resistance
  • High cholesterol
  • Type 2 diabetes
  • Heart disease
  • Endometrial cancer
  • Breast cancer
  • Ovarian cancer
  • Uterine cancer
  • Extensive coronary artery disease
  • Heart attack
  • Acne, often severe
  • Hirsutism (HER-suh-tiz-um) increased hair growth on the face, chest, stomach, back, thumbs, or toes
  • Weight gain
  • Problems with ovulation
  • Infertility because of lack of ovulation
  • Infrequent, absent, and/or irregular menstrual periods
  • Multiple, small cysts in the ovaries
  • Oily skin or dandruff
  • Weight gain or obesity, usually extra weight around the waist
  • Male-pattern baldness or thinning hair
  • Hyperadrogenism (an excess of male hormones)
  • Chronic unopposed estrogen secretion
  • Acanthosis nigricans (patches of skin on the neck, arms, breasts, or thighs that are thick and dark brown or black)
  • Skin tags (excess flaps of skin in the armpits or neck area)
  • Pelvic pain
  • Anxiety
  • Depression
  • Sleep apnea
  • Preeclampsia during pregnancy (pregnancy induced high blood pressure)
  • Gestational diabetes
  • Decrease in breast size
  • Deeper voice
  • Repeat miscarriages
  • Enlargement of the clitoris

As you can see, PCOS causes a myriad of symptoms. Some patient's lives are greatly affected by it, while for others it's just a nuisance. While we wait for both for doctors to reach a conclusion about the cause of PCOS, we also wait for the cure.

To do more research on PCOS, you can visit The Androgen Excess and PCOS Society.