My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar I Rapid Cycling With Psychosis ~ Migraines ~ Obsessive Compulsive Disorder (My OCD is currently in remission except for hoarding) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Tuesday, May 29, 2012

Will there ever be some relief?

I'm going to turn 31 on June 12th, but getting older doesn't bother me.  I have 31 years of wisdom, and I'm proud of that.  However, I've also suffered pain for the majority of those 31 years and there is no relief in sight. My rheumatologist told me that she will not send me to a pain doctor because my pain is too bad and too spread out for a pain doctor to help me.  The internist I saw said the same thing, but about EDS--that I have too much pain and in too many places for a pain doctor to be able to treat.  Does that make any freakin' sense at all?  No, it doesn't.  My rheumy also still thinks that fibromyalgia is my biggest problem, not the EDS.  She's nice enough, but she is an idiot.  She also thinks that it is impossible for the same person to have fibromyalgia and ME/CFS (chronic fatigue syndrome).  That is just crazy, as many, many people have both.  I have never been evaluated for ME/CFS though I suspect I have it.  Doctors refuse to evaluate me for it, but since there aren't any treatments for it, I don't think it matters much if I have a diagnosis or not.

Swallowed in intense and fiery pain

I have been depressed lately, and each day is worse than the day before.  I know that I am going to spend my whole life in pain, until it eventually cripples me.  Lately there have been days I can't type at all because of hand/fingers and wrist pain.  My daily headaches make it hard to do my cross-stitching, and my dizziness from POTS makes it hard to focus on the tiny holes in the Aida cloth (cross-stitch cloth).  It is very depressing.

I saw an internist recently, to try to find a Primary Care Pysician (PCP).  The doctor was extremely rude and in so many words told me I was stupid and selfish for wanting a baby when I have EDS.  I talked with my gyno the week before (he is actually a ob/gyn), and while he told me the risks associated with an EDS pregnancy, he wanted to assure me I can have a baby if I choose to.  The internist was so rude and said so many hurtful things I left the office just in time before I burst into tears.  I cried for half an hour afterwards.  People said I should report him, but I just want the experience over and to forget it.

It just really depresses me that my quality of life is sliding further and further downhill as my pain levels continue to increase.  At what point do I go into a wheelchair?  I haven't found a doctor who understands, or even cares how bad my pain is.

The pain is constant, constant, constant.  The pain is overwhelming, and I feel swallowed alive in it.  

Monday, May 28, 2012

Happy Memorial Day!

Happy Memorial Day to...

Grandpa
Korean War Veteran

Grandpa with Grandma

Grandpa wearing the 1st scarf I ever crocheted


Grandpa Ezra
World War I Veteran 

Grandpa Ezra

Grandpa Ezra's grave

Thursday, May 17, 2012

PCOS and Aldactone

I had to see my doctor recently to refill my PCOS medicine.  I kept having to reschedule because of having so many flares, but I finally got to see the doctor.  The medicine I take for PCOS, Aldactone (generic Spironolactone), binds with the extra male androgens in my body, which reduces male-pattern hair growth (hirsutism), male-pattern baldness, and severe acne.  That stops my body from using all the extra male androgens, that would otherwise be doing harm to my body.  My acne, when I'm not on Aldactone, is severe, and covers my face, breasts, upper back, chest, back of neck, and shoulders.




Unfortunately, I have read that Aldactone can be dangerous in some situations, and I know already that you have to stay on birth control while on Aldactone, because becoming pregnant with a male fetus could do irreparable harm to his developing sex organs.  I worry a bit about being on Aldactone because of my POTS, because Aldactone is a diuretic and lowers sodium levels.  However, I'd rather my POTS be a little worse, than be bald, hairy, and covered in severe acne.  If you think that is vain, ask yourself, as a woman, would you mind balding like a man, or growing a mustache?  Also having everything from your forehead to your breasts covered in severe acne?  Yeah, I don't want to, either, which is why I don't plan on going off of it until I start trying to have a Mini-Me.




PCOS can cause many problems for women who have it, including diabetes type 2, metabolic syndrome, insulin resistance, obesity, acne, heart disease, high blood pressure, high cholesterol, endometrial hyperplasia, cancer of the uterus (endometrial cancer), menstrual and hormonal irregularities, infertility, changes in skin pigmentations (acanthosis nigrican), cystic ovaries, and Hirsutism (extra hair growth in women, i.e. face), male-pattern baldness.  Of course, not all women will have all of these symptoms.





It is important to remember with PCOS that a woman who has PCOS doesn't necessarily have cystic ovaries, nor do all women who have polycystic ovaries have PCOS. The name Polycystic Ovarian Syndrome is misleading because of that. It is also important to remember that ovarian cysts are not the same thing as cystic ovaries. Ovarian cysts can cause an emergency situation, while cystic ovaries will not. Ovarian cysts are fluid-filled sacs located within or on the outside wall of the ovary, while polycystic ovaries are "enlarged ovaries with thickened sclerotic capsules and an abnormally high number of follicles are present. The follicles may concurrently exist in varying states of growth, maturation, or atresia."



 
Polycystic Ovary
Polycystic ovary

It is common for women to also go on the birth control pill, and on diabetes medication if they have pre-diabetes.  PCOS isn't something to ignore.  There is some evidence that PCOS may have a hereditary factor, thus it being passed down from mother to daughter.  While many women with PCOS are overweight, the hormone wackiness from the PCOS causes the weight gain, and makes it harder to lose, not the other way around.  So while I know PCOS is something to watch, in my life it isn't something I think about all the time, and I can take it in stride.

Sunday, May 6, 2012

Behind the Blogger Challenge 30

•Day 30- Who are you?


  • Kittymommy

Niki



  • Wife



  • Best friend



  • Future Mommy (not as in 9 months, but in like two years)



  • Bibliophile



  • Animal lover



  • Very Political



  • Writer



  • Lesbian



  • Tree hugger



  • Bookworm



  • Pen paller



  • Winner



  • Blogger



  • Caffeine Addict
That is...put the coffee right into your veins...





Saturday, May 5, 2012

Behind the Blogger Challenge Day 29

•Day 29- In this past month, what have you learned

A lot of states have a higher cost of living compared to my state.  I was doing research on different states and I found out that the cost of in many states is much higher than here, even though we are barely making it here.  I was amazed.  If we can barely make it here, what do people in other states do?  I think Social Security Supplemental Income (SSI) does go up though, depending on the state.



Friday, May 4, 2012

Not a good start to the day

I didn't go to sleep last night, I just read free books on my Kindle for PC, which you can also download free.  It's a great way to read more books, but because it's so easy to get published there, the books you do read are hit and misses.  I'm reading one called When Women Were Warriors that is good so far.  Some of them are only eight pages.  Usually the really short ones (from what I've seen so far) haven't been edited.  Some are so full of errors it is impossible to follow the story line.  I downloaded a lot though, since it's free, so I'm sure I'll find a few gems, too.
I didn't go to sleep because I'm scared to sleep because of the nightmares I've been having.  I usually don't remember then afterwards, but keep waking myself up moaning from pain or yelling out from nightmares.  I even woke up screaming the day before yesterday during a nap.  I have no idea what I'm dreaming of, for the most part, but it was perfect timing that my therapist appointment was yesterday.  That is, if I went.  I realized at 2:00 am that I missed my appointment yesterday.  I really hope my therapist doesn't drop me for this, but I am afraid she might.  

Lately I've been clenching my jaw, especially when I sleep.  However, not only did I not get any sleep last night, but I also forgot my nighttime meds.  So not my jaw is in spasms, and every inch of my body is screaming in pain.  I feel like screaming myself, but I don't think I could open my jaw that wide.  My head is also killing me.  I feel like someone is tapping three ice pics into my head: one in my forehead and two above my eyes.  I have that "I stayed up all night and didn't take my meds" feeling, where I'm shaking, my muscles are in spasms, my stomach hurts, and to to it all off, I've had heartburn since yesterday afternoon.  My throat even hurts this morning from the acid of the heartburn.  

My morning is not starting out good.  The majority of the time, if I forget my nighttime meds, I flare.  As luck would have it, I'm definitely in a flare now.

Oh, today is May 4th.  So "may the 4th be with you."  Happy Star Wars Day.  ;-)

Wow, isn't this nice?  The motor just died in my laptop cooling pad, so now my computer will overheat.  Nice.



Behind the Blogger Challenge Day 28

•Day 28- A picture of you last year and now, how have you changed since then?


Me in April 2011


Me in April 2012


Things have changed a lot in the past year.  For instance, my in-laws are no longer staying here, thank heavens!  Pain and poverty still plague my life, I am happy and thankful for each day.

Thursday, May 3, 2012

Behind the Blogger Challenge Day 26 & 27

•Day 26- What you think about your friends

My best friends are my hubby, Nessa, Om, and my kitty Niki.  What do I think of them?  My hubby is the strongest man I've ever met, funny, handsome, sweet, understanding, loving, a good kittydaddy, very sensitive, romantic, caring to a fault, empathetic, unselfish, awesome, sexy soul mate.  My Nessa is the best friend I've ever had.  We have so much in common, it's amazing.  I can talk to her for hours on end and not run out of things to say.  She is great with kids, and inspires me to try harder when I would have otherwise given up.  My Om is a wonderful person, an awesome friend, wife, and mother.  She raised her kids to be my favorite kids on Earth and very well behaved.  They are either geniuses or near genius level.  Om is caring, warm, a good hugger, giving, and a great shopper.  Niki is my little tortie girl, who is about two and a half years old.  She's a kleptokitty and steals everything.  She taught this to her new little sister, Katya, so now Katya steals, too.  Katya taught Niki to hiss and now Niki hisses all the time when she plays.  Niki always listens to me, and the way she looks into my eyes I know she can see my soul.  If I described her in one word it would be "sweet."

Niki purr-fect face



•Day 27- Why are you doing this 30 day challenge

I want to let my readers get to know me better.  I did a 30 day challenge last year and it went over great.  I haven't done the same amount of advertising on social media networks as I did last year, but a lot of people are still reading, which makes me very happy.  Hopefully, at the end of this challenge you will know me better and have been entertained at the same time.

Tuesday, May 1, 2012

Fertility and eating healthy

Today is May Day, a day that has been celebrated for spring and fertility since, well, a long time ago.  I've decided that for my own fertility I need to lose some weight, and be serious about it.  I may have fertility problems with my PCOS anyway, and I definitely don't want that to happen.  Any thing I can do to make my fertility better, along with make me strong enough to go through a pregnancy is a good thing.  Losing weight and getting stronger can only be a good thing.

Polycystic Ovarian Syndrome
My ovaries are similar to this, which scares me about my fertility.  This is a scan of an ovary covered in tiny cysts
I've decided I want to get some movement in three days a week.  I'm not at the point right now where I can exercise three days a week, because of severe pain and fatigue, but I can make a point of getting some movement in.  For instance, I can:
  • walk around the yard
  • replant my flowers
  • do physical therapy exercises I learned when I was in PT in January 2011
  • do as much cleaning as I can
  • research and do leg strengthening exercises

I also want to make a serious effort to start eating good again.  I was eating good, but then I started back into my old habits of eating too much ice cream.  Ice cream is okay for a once in awhile treat, but not okay to have so often, or to have a lot of.

Doing these things will help increase my fertility so that I can become a mommy when the time is right.  I've lost over 100 lbs before, so I do know something about losing weight.  I've gained a lot of weight in the last three years, but with hard work I know I can take it off.

One of the important things I've learned about eating is to be in the present.  Enjoy what food you are eating right now, and when you exercise concentrate on your body's movement right now and how hard your body is working for you.  Think of your body as a hero, trying it's best to defeat the illnesses you may have.  If you eat something bad, from here on out eat good, and because you are living right now, you can change the day for the better now, instead of waiting until tomorrow.  Enjoy what you eat, rather than feeling guilty for it.  If you enjoy it, and live in the present, you are less likely to want to go back for more. 

For instance, you may say that you must have chocolate every day.  My advice would be to buy Russel Stover's Sugar Free chocolates and eat one daily.  When  you eat your chocolate, don't chew it.  Let it melt in your mouth, and savor it.  Yum.

Today I've had frosted mini-wheats and skim milk, so I've started off the day right.  I also lose weight best on a high fiber, low fat diet.

I'm going to be using these tips in my weight loss journey, and updating it a little as I go, and I hope I gave you some ideas, too.  If you have an idea to add don't be shy, and put it in a comment!  I fixed my comment section where anyone should be able to comment. 

Behind the Blogger Challenge Day 25

•Day 25- What I would find in your bag

Purses, purses, purses!


  • Personal Calendar for 2012
This is filled mostly with doctor appointments



  • My wallet (which is kinda funny since I have no cash, credit, or ATM cards  lol)

It doesn't show the dust in the wallet


  • Spare OTC meds (tylenol, rolaids, cough drops)

cough, cough


  • Medical Power of Attorney DH (darling husband) and I have on each other

Not exactly what my purse looks like, though


  • Tampons and other such items

You know, all "that stuff"


  • Small notebook that I put writing ideas in

My note book, a few post-its, and my calendar 



  • Post-Its

What would the world do without Post-Its anyway?


  • Rosary  (though I'm no longer Catholic I still carry a Rosary at all times)

Rosary


  • Catholic Prayer cards  (I also carry prayer cards everywhere still)

Our Lady of Mental Peace


  • Sterling's two "mousies" he ripped the tails off of, so I always have something of Sterling's with me

Sterling's "mousies"


  • Key Chain
    • personalized Elvis keychain
    • my state keychain
    • Graceland charm
    • Ophelia's dog tag and the charm she had on her collar
    • a keychain I received for an honor at my college I got my undergrad at
    • a Peru keychain from my pen pal in Lima, Peru
    • tags from 

Peru keychain from pen pal in Lima, Peru

Personalized Elvis keychain from Graceland

  • Spare keys

I carry so many keys!


  • Sweet Vanilla Cream Antibacterial Hand Lotion

Antibacterial Hand Lotion
















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