Finally some useful info!

My head is spinning with a whole bunch of test results I got back from the healing arts clinic. I don't know what to call this clinic - it is a place where they treat "the whole person" rather than just bits and pieces of you :) and they use natural supplements as much as possible. I'm on information overload right now! Their main findings were:

Candida overgrowth/lack of beneficial bacteria in the gut

Food allergies, mainly to gluten, cow's milk, eggs and certain beans

Hormone imbalance: too much estrone and not enough estradiol and progesterone. The term she used was luteal phase defect

I found this all to be very useful. Most of the time I go to the doctor and they can't tell me exactly why I feel like crud all the time. Now I have something to work with! Although it will be hard to give up those foods, I know I need to do it for my health. She put me on diflucan to kill the candida, and a high-powered probiotic to replace the good bacteria.

As far as the food goes, I have to avoid my allergens for 3 mos. and then I can try adding some back in one at a time. I also have to rotate my foods every 4 days, trying not to eat the same things from day-to-day. This will prevent new allergies from occuring. For the hormone balance, she prescribed some progesterone cream for days 12-28, and also a supplement which I can't remember the name of at the moment. It is something that your body produces when you eat cruciferous veggies, and it is supposed to help your body convert estrone to estradiol. She said my hormone balance is something she would expect to see in someone much older than I am! So I need to try and get it back to normal. If that doesn't work she has other things to help.

For migraines she suggested CoQ10. Dr. Teitelbaum's vitamins were helping me in this area, but I have to give them up for now because they contain whey :(

So, that's it in a nutshell. Speaking of nuts, that is one of the only things I can eat anymore :) Yesterday was my first day GFCF (gluten-free casein-free) and egg-free. I did OK. I felt a bit hungry at times but I survived. Here's to day 2!

Infertility

This is the most sucky of them all, emotionally speaking. SUCKY SUCKY SUCKY!!! Since around the time my health started going downhill about 7 yrs. ago, my hubby and I have suffered with secondary infertility.

"Secondary infertility is defined as the inability to conceive after one year of unprotected, 'well-timed' intercourse for couples in which one or both partners have previously conceived a child. Having the label of 'infertile' is often a traumatic one, whether or not a couple already has other living, healthy children.

It seems as though infertility has been steadily increasing over time, and it is: according to the National Center for Health Statistics, apr. 6.1 million women in the United States are now infertile, compared with 4.9 million in 1988. No statistics are available for the number of couples with secondary infertility, however. The most common reason for either form of infertility is the trend for women to delay childbearing. The ability to become pregnant peaks in a woman's mid-twenties and decreases steadily as she ages. By age 35, this becomes a fertility factor; by age 40, 7 out of 10 married women who wanted to conceive were infertile. In addition, the incidence of miscarriages increases with increasing age, especially over age 35."
- from http://www.drdonnica.com

I don't know why but this issue affects me more than my headaches or aches and pains. It is heart-wrenching - absolutely heart-wrenching! Most people don't know about it because we kept it quiet for many years - we didn't want the "pressure." For some reason, families and societies put a lot of pressure on couples to reproduce! As soon as my hubby and I were married 14 years ago, we immediately started getting "hints" from well-meaning family and friends. We had full intentions of starting a family as soon as I graduated from college and we did; my son was born 3 years after we were married.

Seeing as that pregnancy was pretty uneventful and normal, we didn't have any reason to suspect it wouldn't go so smoothly the second time! That was right about the time my headaches started. Up to that point my only health complaints had been my occasional heart spells. Who knew my body was a ticking time bomb?! The infertility may have been our first "clue."

We went to several OBGYN's and fertility specialists in our area. The structure and function of everything seemed to be "normal." The doctors and nurses would wink and nod at us as if they expected the secondary infertility to disappear at any moment! Like, "We don't know why this is happening but we just KNOW (wink wink) it should go away any day now." Sigh. . .

I went through various stages of emotions with this problem (and still going through them). At first I thought it was nothing and would pass and besides we weren't in a big hurry. Then my optimism began to crumble as I passed age 30 and realized my first child was getting older and older and I was worried about the age difference. My hubby didn't seem to care; he felt O.K. with just one child but I was not. When other family members announced pregnancies I felt like I was on the verge of a nervous breakdown; I would cry for hours! I couldn't understand why this was happening to us. We were good parents and our first pregnancy happened so easily. I would have nightmares and still do :( Further complicated by the fact that I couldn't tell anyone and they continued with the not-so-subtle hints that just made me want to cry.

When I started learning about my EDS, Chiari, etc. I realized those conditions may be contributing to the infertility. Perhaps my Chiari was messing up my hormones, or my EDS tissues were too floppy or. . .something. I wasn't sure what. Then I realized I didn't want to pass the EDS/Chiari on to another innocent child and perhaps adoption would be a better option. However my hubby wanted to go through some infertility treatments first to make sure "we did all we could do."

Those were a living nightmare! More tests assuring us nothing was wrong. Ultrasounds showed my ovaries functioning normally. They gave me Clomid to stimulate a release of multiple eggs. We could see them right there on the screen; the doctor would wink at me again as if to say he was SURE this would work. We had artificial insemination done 3x. Each time I had the eggs ready and waiting and I had to inject myself in the abdomen with some kind of hormone also. Finally the last round the doc told us "the boys" were not good. Sperm count was low and motility was low. That was when we finally gave up on that; the hormones made me feel sick and made my joints pop and gave me migraines galore! Not to mention the gut-wrenching emotions it put me through each time thinking maybe it would work and then being disappointed.

Finally I talked my hubby into signing up at an adoption agency. That was no small feat in itself! He was never that excited about adopting but I hope he'll warm up to it when we actually have a child! I tend to believe we should've gone to a reproductive endocrinologist, but we didn't have one very nearby and there was NO WAY I could have survived IVF. I figured if we were going to throw all this money which we did not have into fertility treatments for nothing, why not take that money and put it towards an adoption? It made all the sense in the world to me. I wouldn't be passing on my health issues to another person, I wouldn't be stressing my body out physically (Pregnancy could make my symptoms way worse), and we'd be giving a child a loving home.

I have pretty much given up on the idea of carrying another pregnancy. If it happens of course I will be surprised and happy. But, I think it would be too much stress on my already messed-up body. So I don't want people telling me their secret fertility tips and what worked for them or their next-door neighbor or their cousin's friend from school etc. It's too upsetting for me to even "go there." So, I am focusing my energy towards the exciting future when we will hopefully have an adoption soon :)

Car trips part II

We went to Cincinnati this weekend and amazingly I escaped the trip withOUT a migraine!!! This is a record for me - first time traveling to Cincy without a headache! Hooray!

I'm not really sure what I did differently besides doing Reiki self-treatment during the trip and also getting a high-powered head-to-toe massage with gobs of essential oils the day before. This was a new massage person I had never been to before. I did not expect to smell like a Christmas tree after my treatment but it really relaxed all those tight muscles! My thigh muscles have been locked up for MONTHS and he was able to relax them!

When we arrived in Cincy I really didn't feel too good with the neck muscles trying to spasm, my eating schedule disrupted, stress etc. My neck kept trying to spasm and I kept Reiki-ing it and applying my lovely My-grastick (lavender and peppermint oils - I highly recommend)! When we got to our hotel I immediately took a nice warm shower and tried to relax as best I could.

The parties we went to were very frustrating for me becuase I didn't feel the best. I had my beautiful party clothes on but I didn't feel like partying or even being in any of the pictures :'( I was a bit depressed because although I did manage to fight off the migraine I still felt crappy enough not to enjoy myself. I didn't have the energy to socialize. I just sort of sat there trying not to be sick :( However I suppose I should celebrate the small victories.

Another issue was food. We went out to eat several times and I was very limited in what I could eat. I ate a few "questionable" items which contributed to my overall crappy feeling. The next day I felt 100% better. So I'm thinking there is still something with car trips that doesn't agree with me.

Shoulder update

Well as of the end of last week I am officially released from the doctor's care for my shoulder :) Woo hoo! Everything seemed to heal up normally and I do my exercises faithfully. I told him that it's been popping in the back of the joint (not the front where they did the work). He said that is normal as the muscles have to "re-educate" themselves how to move with the repaired joint. He said the official name for the surgery he did was a "Bankart Repair."

"The most common method for surgically stabilizing a shoulder that is prone to anterior dislocations is the Bankart repair. The Bankart repair involves sewing or stapling ligaments, along with the labrum, on the front side of the joint back into their original position.

In a Bankart repair, we first clear away any frayed or torn edges. Holes for the sutures are drilled into the scapula bone. The capsular ligaments and labrum are then attached with sutures to the bone. The ligaments heal, and scar tissue eventually anchors the ends to the bone. With the ligaments back in place, the joint is much more stable.

Typically the Bankart repair is done through an incision on the front of the shoulder."

- from www.sportsarthroscopyindia.com

Well I'm glad to know the official name of it now :) It only hurts if I over-do it, then I get the overwhelming feeling it needs to "pop" in the back of my shoulder.

EDS on TV again

EMMY-WINNING “INTERVENTION” DEBUTS EIGHTH SEASON AT 9PM ET/PT

New York, NY, November 9, 2009 A&E’s 2009 Emmy Award-winner for Outstanding Reality Program “Intervention” and critically acclaimed “Hoarders” return for all-new seasons with back-to-back premieres on Monday, November 30th at 9:00 PM ET/PT and 10:00PM ET/PT.

The eighth season premiere of “Intervention,” features Linda, who after graduating from college found success working as an extra in Hollywood, achieving the glamorous life she always wanted. Linda’s dreams died when she came down with Ehlers-Danlos Syndrome, a rare disorder characterized by joint dislocations. Linda started taking Fentanyl, a painkiller 100 times stronger than morphine. As her painkiller use escalated, she claimed that different sources were causing her pain, including electricity, energy, colors, and even specific people. Despite Linda’s wild claims, her mother clings to the belief that Linda’s pain is real and she must do everything to help her, including depleting the family’s savings and sending her son to be Linda’s caretaker.

“Intervention” is a powerful and gripping series in which people confront their darkest demons and seek a route to redemption. The Emmy and five-time PRISM Award-winning series profiles people whose dependence on drugs and alcohol or other compulsive behavior has brought them to a point of personal crisis and estranged them from their friends and loved ones. Each episode ends with a surprise intervention that is staged by the family and friends of the addict, and which is conducted by one of two specialists: Jeff Van Vonderen and Candy Finningan. Exclusive updated interviews with past subjects from the series first seven seasons are available on AETV.com/intervention.

The series has conducted 143 interventions since its premiere in March of 2005, 111 individuals are currently sober.


***********

I'm not sure how I feel about this. First of all EDS is not something you "come down with" - you are born with defective connective tissue. Secondly I don't like that they are portraying us as drug addicts. Yes I'm sure some end up that way, but most of us are just regular people trying to live our lives. I guess that's not exciting enough for 'em :-/

Happy Ending

This is a really cool article in the New York Times: Happy Ending

I have thought about this a lot. Having a chronic illness makes you ponder the important things in life. You are faced with your body's mortality, your life altering its course, and the feeling that you are not in control of your own circumstances. For some this can be pretty difficult. I went through a period of mourning of my life "as it was supposed to be" and how I had planned it in my mind. In the end I decided this reality wasn't as bad as it appeared. In fact, there are many blessings in disguise that come out of having a chronic illness. Some things do suck big time but other are like "Wow! - I never would have discovered this before." So yeah you do have to ponder the meaning of life and the fact you won't get to take your SUV with you to the grave. But it forces you to count the blessings you may have ignored.

If I'd have to list them I'd say TRUE friends, family support, pets, small moments of beauty and kindness, the days where you feel GOOD, being able to do things you enjoy.

My personal philosophy of life is it's kind of like a video game. If you could play the game for eternity with no danger, no limits of any kind, and no difficulties, how fun would that be? I think God gave us the limits and difficulties so we can actually learn and live meaningful lives. If we lived forever on earth, I agree with this article that we'd never get anything out of our lives. It would be VERY boring indeed.

Gluten

I am turning into "that weird lady who can't eat anything." I used to think those people were nuts. NOW I AM ONE OF THEM!!!! I was reminded of this at a recent family gathering of the in-laws. I picked up a package of bread they were serving to read the ingredients and boy did I get weird looks! One person asked me if I was gluten intolerant and I said, "I try to avoid it." (MORE WEIRD LOOKS)

You know what, I don't care. It is my MISSION to educate the world about nutrition and health!!! I came upon this mission when I was just living my life normally and suddenly all these health problems came after me. When I altered my diet I felt better. Hmm. :) Now I have become like my yoga instructor who brings us flaxseed crackers after class.

I am really suspecting now that I am sensitive to gluten. I haven't cut it out completely but I notice when I eat some, my digestive tract is disrupted.

"Gluten is a composite of the proteins gliadin and glutenin. These exist, conjoined with starch, in the endosperms of some grass-related grains, notably wheat, rye, and barley. Gliadin and glutenin comprise about 80% of the protein contained in wheat seed. Being insoluble in water, they can be purified by washing away the associated starch. Worldwide, gluten is an important source of nutritional protein, both in foods prepared directly from sources containing it, and as an additive to foods otherwise low in protein.

The seeds of most flowering plants have endosperms with stored protein to nourish embryonic plants during germination, but true gluten, with gliadin and glutenin, is limited to certain members of the grass family. The stored proteins of maize and rice are sometimes called glutens, but their proteins differ from wheat gluten by lacking gliadin. The glutenin in wheat flour gives kneaded dough its elasticity, allows leavening and contributes chewiness to baked products like bagels.

Although wheat supplies much of the world's dietary protein and food supply, as much as 0.5% to 1% of the population of the United States has celiac disease, a condition which results from an adverse immune system response to gluten. The manifestations of celiac disease range from no symptoms to malabsorption of nutrients with involvement of multiple organ systems. The only effective treatment is a lifelong gluten-free diet."
- from Wikipedia

I'm waiting for my results of all the tests before I haul off and dump all my homemade bread into the garbage can. I make homemade bread with my bread machine at home - I mix it in the machine and then bake it in the regular oven. It turns out so good! But I could definitely learn to use other types of flour. It wouldn't be that large of a leap for me to go 100% gluten-free. I'll just get more strange looks at the next family gathering!

Furry heating pads!

I am an animal person. I LOVE all animals; there's hardly any type of animal I don't like. Right now I have 2 cats, 2 tree frogs and one betta fish. But I've owned many different kinds of pets. My favorite are the FURRY ONES! Such as cats. In fact I think cats are necessary for my health! Yesterday I was having a lot of problems with my arms. I kept picking things up and dropping them, and my shoulders were spasming and popping like crazy. Finally near the end of the day I got a migraine and had to take one of my "bad pills." :(

The funny part was my cats were acting as furry heating pads! I was sitting in a recliner with the laptop going through my backed up e-mails. There was a teeny sliver of my lap free and my older cat Maya (NOT A SMALL CAT) squeezed onto the tiny space on my lap. So one side was covered with the lap top and the other side was covered with a large furry heating pad! She balanced herself there for over an hour!

Sapphire (Saffi) the kitten just had her front paws declawed and had her "big surgery". They also put a microchip in her in case she gets outside and gets lost. Anyway she was a lot less active than normal so she laid by my feet. The warmth and softness of their fur always makes me feel calm and relaxed. Saffi likes to lay right on my shoulders too. It makes me wonder if they can sense the "disorder" in my body and they know right where to lay!