tiredofdoctors

Had brunch with my daughter after listening to her and her husband sing in the choir at their church and watch Ashley direct the Children's choir. Kind of strange seeing your child as much of an adult as I did today. Then see her again as your little girl when you go to brunch!

According to my daughter, there is just a small square of hair which is cut out of the area at which they are going to drill. She said that the hole is somewhat small. Of course, that is all VERY relative. She shows me the diameter of the hole in her friend's head after surgery for an aneurysm. Personally, I thought it was large. She thought it was small!

I also question having a square shaved out of my hair!! And HOW do you color it as it grows back in?????!!!!! Let's face it -- they won't let me do that for 6-8 weeks minimum. HELLO???? I have ROOTS!!!!!!! Mostly gray, some are very dark brown!!!!!!!!! So, we'll have to come up with some plans, guys!

Going to go see my mother and my son in a few . . . .

Take care all -- you really are the best.

Love & Hugs,

Lynne

Pauliina, that is GREAT advice. You are so insightful!

sickofit, I agree with what everyone here is saying. Don't try to take on all of these problems in one big heap. What's the best way to eat an elephant? One bite at a time. The first thing is to make sure that you DON'T become homeless. Find out about Section 8 housing. Find out about resources that are available within your community. We have an enormous amount of places that will give money -- without expectation of return -- to people who are in just your position. I would also be sure that you have health insurance. You are probably available for some type of assistance --you may be able to receive supplemental income until you are able to get back on your feet.

I would look into community-based therapy. Often, it is free. Particularly since you are a product of the foster-care system. Someone who is as "down" as you are right now needs a professional who can help you wade through that "pea soup" feeling and help make a plan using resources within your community. They will know the resources which are available and will help you develop a plan to get you OUT of this rut, and KEEP you out of it later. If you are not hooked up with someone that does that, ASK FOR ANOTHER. You deserve to have the very best person working with you.

Please take the advice of the people who have responded. I don't know of a more caring, understanding and innovative group of people that I have ever met. They are wonderful. They have gotten me through some of my darkest times. That is the absolute truth. These are people who will tell you the truth when you don't want to hear it. That makes them the people who care about you. And who could ask for more than that?????

xoxoxoxoxo

Lynne

I'm curious . . . how old are you? You DEFINITELY gather a different perspective the older you get. TRUST ME!! I've been in some pretty low times in my life -- have even been hospitalized because I just didn't want to stick around here. What I've found, though, is that a lot of the people who are touting positive attracts positive, etc., are right. And until you can't truly become positive, it's on the "fake it 'til you make it" level. Sounds cheesy, and probably where you are right now, trite, but I've come to find that it works for me.

Right now, I'm scared as Hell that I'm going to have to have brain surgery. I already have quite a bit of cerebellar damage because of Neurological Celiac. So, I don't have a lot of brain to lose!!! And there you have it -- without thinking, I immediately result to humor, because that's how I cope. And so, I tend to bring into my life the funniest, happiest people that I know. Friends who are wild, crazy funny. People who are so uplifting. We absolutely have relationships that we keep each other going -- sometimes through some of the most awful things.

Do I sound like a Pollyanna? You bet. I sound like someone who is so "PERKY"!! Trust me, I don't do perky -- ask any one on this board. They would be more than happy to tell you that I'm not the perky type. Smart-aleck, not afraid to get in trouble (well, sort of afraid to get in trouble -- but I still do), but anything but perky. Just relying on my friends to have some fun in the face of some really bad stuff.

I'm not guaranteeing that it works for everyone. Just saying it works for me.

Take care of you, and if you need a sarcastically funny spin on the things that are happening, PM me, okay? I'll do my best.

Lynne

Hey, guys -- the worst that could happen is that I could be like the cousin-in-law in Las Vegas Vacation!! I could have intermittent moments of fainting unless I "shift the metal plate" in my head!!

Just not going to think about it. Will wait until Tuesday, see what the guy says, and go from there. Hoping that 3mm isn't so big when it comes to "blips" in brain arteries! Will just, again, have to see.

Karen -- do you know that the new Mrs. Trump does his comb-over? He admitted it on some late-night talk show! Seriously -- if you were some fashion-model type, would you continue to let your husband have a comb-over? So, here's the deal: I'd like to have your little avatar-guy dressed with a comb-over -- I could be the "ugly twin"!!

Anyway, just having a yuck day . . . getting ready to go back to bed . . . . .

Have to cause trouble tomorrow -- even IF it's mother's day!

xoxoxoxoxoxoxo

OOOOOooooooooooh. Bring it on, Sister!!

Actually, that was FANTASTIC!

The design thing sounds pretty good . . . . I'd have to have that done professionally, however. Tried to do that with my son's hair when he was younger. No one speaks of it without malice. Mostly, my son.

I do like the idea, also, of keeping my hair long in the front. Every now and then I do need to LOOK respectable, even if my verbage and demeanor CLEARLY point to the contrary!!!

My neice, however, is still wanting me to put neon pink streaks in my hair. If I should have to have surgery, she would REALLY want it then. Jestgar, I'm thinking that I should do something more along the lines of your avatar.

Of WHICH Sanjya look are you speaking???!!!!! Oh, I'm sorry, I didn't look back at your post! Oops . . had to edit my post! If they left me with enough hair I possibly could pull that off.

Cyndi Lauper . . . . . interesting . . . . Girls Just Wanna Have Fun, you know . . . . . and it IS, as gluten-free Memphis pointed out, the month of a blue moon!!

We have a history of getting a little bit goofy during the full moon.

A LITTLE bit goofy?????!!!!!

A horse walks into a bar . . . . .

Bartender asks: "Why the long face?"

Just warming up. Haven't gotten to the "hind lick maneuver" stage yet.

ONE BIG MASSIVE ALTOID??????? My question would be "which party will be the recipient of such a curiously strong peppermint? Simply a question, that's all.

BTW: Forgot the rest of the backg-up singing:

Ba Ba Baba, Baba, Baba, Ba; Ba Ba Badag adag adag . . . Oh, forget it. I've been singing these lyrics over and over trying to get them out to write them, then I google'd it and can only get the stupid lyrics, not the backup lyrics for WAY too long. Poop. Sorry about that, for all you "GI" celiacs. You can get me back by saying, "Stagger."

Ann -- get Karen's straight jacket ready! There was a time . . . in a land far, far away . . . . that she and I bordered on getting into trouble over full moons!! She escaped . . . . . guess who didn't???!!!!!

Yikes! That sounds horrible! I was one of the lucky ones, I suppose. I wasn't diagnosed when I was breastfeeding my kids -- I was diagnosed with "ulcerative colitis" when I was pregnant with my first child, "irritable bowel syndrome" with the second.

The amazing thing was that I had enough milk for the entire city. Both of my kids were very good "latchers", though. They were really adept at "stripping" the breast well enough so that my milk would let down -- and go EVERYWHERE. This was 24 and 21 years ago, though. Back then, they told me to take Brewer's yeast in order to increase my milk production. First, I don't know if it's gluten-free, and second, I don't know if it's just an old wives' tale.

I do agree with pumping in addition to feeding. Not that lactating women are cows --don't get me wrong -- but farmers must empty the cows COMPLETELY in order to keep them from "drying up". It's the law of supply and demand. When I wanted to go somewhere, I would pump several bottles as I could in addition to feeding. I would start about three days prior to my "outing". The problem for me, though, was that when I then WASN'T pumping, I had copious amounts of milk.

My breastmilk had quite a bit of cream in it, as well. It did rise to the top, and the milk was VERY watery looking, and had that "bluish" tint.

Also, that was back in the day that the doctor said to hold the baby, cuddle him or her, put your feet up, and have a glass of wine! Worked for me . . . . . !!

I have had friends who had difficulty producing milk, as well. By and large, their difficulty was with the baby not stripping the breast enough to stimulate increased production. I can't remember how they remedied that -- it was a long time ago -- but I do know that once they "tutored" the baby with regard to really latching on WELL, they had much better milk production.

Hope some of this helps . . . . . . it must be so frustrating. I'm hoping for the best for you.

xoxoxoxoxo

Okay, this one's only marginal, but it won me "Jester of the Month" in the Louisville Jester. My son submitted it without my knowledge:

Q: What do you call a person who protests outside a psychiatrist's office?

A: An Anti-depressant

xoxoxoxoxoxo

Susie Q --

Matthew McConnaughey -- oooooooooooooh! Isn't he still single? I saw some television program that featured him at his home. He sleeps in every bedroom of the house because he likes them all! I thought that was pretty cool. Not to mention that the man is WAY too gorgeous! You need to find out if he's doing another movie and apply for a part as an extra again. This time, though, be more assertive -- introduce yourself, sweetie!

xoxoxoxoxo

Lisa -- just so you know, since I'm used to singing back-up for Ashley, I'm singing back-up for you:

Blue, Blue, Blue, Blue Moon dip dip dip dip dip

Blue, Blue, Blue, Blue Moon dip dip dip dip dip

xoxoxoxoxo

I can tell you that in my experience, the seborrhea that I have which is along my hairline and in my scalp, has become almost a non-issue since being gluten-free. My dermatologist hasn't seen it during an active flare, but says that it doesn't have the typical description of dermatitis herpataformis. He did say, however, that he wants to biopsy it during a flare, and also wants to do an antigliadin antibody test at the same time to see if there is any correlation. There is one product -- from Amy's -- that I suspect is the culprit, and I suspect that is from cross-contamination.

Also, it is quite easy to incorporate a celiac diet into a weight lifter's regime. Increased proteins are easy -- chicken, fish, beef, pork, tofu (but some are intolerant to soy, and you have to watch brands). The protein powders are "iffy" -- I'd first check to see if they are gluten-free, then introduce them slowly and only one at a time for about two weeks each to ensure that you aren't having a reaction to a component in it. I used to use a LOT of whey protein, but found that I have some bizarre intolerance to it. With regard to carbs, green vegetables, especially leafy ones, brown rice, Tinkyada (sp? -- I always get it wrong) pasta are all easy. Cereals are a little difficult, so I have glucose control Boost (gluten-free) with blueberries for breakfast. I get protein, some carbs, and those little blueberries are scavenging for my free radicals!

I agree that if you are gaining more than two pounds per week, you are probably gaining fat. In addition, you may be having increased fluid retention, depending upon what you are incorporating into your diet.

With regard to do I know what I'm talking about? (because, quite frankly, everyone is skeptical!) -- the answer is "yes". I used to be a weightlifter, and I'm a licensed physical therapist. That being said, don't forget to add a gentle but very thorough stretching program into your routine daily. Shorter muscles are much less efficient than ones that are at optimum length!

Blue moon, full moon, Altoids . . . . . you'll always see Karen pop up!!!!!

BTW: Karen, I LOVE your avatar. It's GREAT

Ann: Yes, the blue moon is wreaking havoc in my life. So far this month, my AMAZING grandmother passed away, and of course they found the "blip" in that artery in my head. DEFINITELY wreaking havoc. Usually, I have had good experiences with blue moons. I guess this is what I get for having good experiences all my life! Personally, I think if I find out that there is going to be a blue moon during another month, I may just go into my cave for the entire MONTH.

Of course, I've been in my "don't want to bother anyone with my woes" cave for quite some time -- but, I need to laugh about it, and lord knows, if I want to laugh, I just need to come here!!!!

xoxoxoxo

Lynne

Lisa --- HOW COOL IS THAT?!! I'm really happy that she was able to have that experience. How many people get to do something like that in their lives? You must be SO proud! Congrats to your daughter!

xoxoxo

Lynne

I have a FANTASTIC dietician. Unfortunately, she's in Louisville, KY. She specializes in Celiac, attends all support group meetings just as a "go to" person -- she's pretty amazing. What KNOWLEDGE.

I'd shy away from nutritionists -- not that I think they're all bad, but I had two really bad experiences with them -- and I ended up spending a LOT of money on things that made me REALLY sick. Now I only buy Freeda vitamins, and Eskimo3 fish oil because it consistently has the lowest mercury levels and states on the package that it's gluten-free. With the Freeda vitamins, I am on a "mitochondrial cocktail" that the geneticist prescribed. You wouldn't BELIEVE how many B vitamins and CoQ10 I have to take. A three month supply was only $130. I thought it was amazingly low-priced, considering how much I bought.

I hope that you can find a good dietician in your area -- it will DEFINITELY be money well-spent.

Good luck to you -- I'll keep you in my thoughts and prayers (I've definitely become more spiritual since all this sickness garbage)

((((((((((Hugs)))))))))),

Lynne

I'm Baaaaaaaack!!!!!!!!! See, Scott didn't kick me off, after all -- mouth and everything!!!

Thank you guys so much for all the good thoughts.

I CANNOT be Britney -- I wear underwear, Karen. We won't go any further with that.

Mohawk? Good possibility, Chris. Seriously, if you would see me now, you wouldn't believe how long my hair has gotten. I FINALLY have long, luxurious blonde hair (my childhood goal) and wouldn't you know it --it may have to be SHAVED OFF! I would get a lot of street cred if I let my scar show. Although, when I'm downtown at my doctors' offices now, and I go to the two stores that I like, I have to go through a really SKANKY part of town. The last time I was rollin' along, I came across two gang members -- individually. The first one was wearing a black hooded shirt, then a white hoodie on top. I could see the gun shoved in his waistband. He looks at me and says, "You'd better be careful around here, O.K.?" Then, I'm ambling along, come across another gang member (different gang -- different colors). He says, "Hey -- be careful, you hear me?" I told him I'd be careful. Have to say, even the wino's are really nice to me, though. I must have SOME kind of street cred down there!!!

Personally, I'm thinking this: If they can do a cardiac catheterization by going through the groin, then why couldn't they just thread that sucker a little farther up and send it on into my brain? Think about it -- they're ALL interconnected! The only problem would be that instead of branching off like they're supposed to (the OFFICIAL word is "bifurcating" -- just to pseudo-impress you guys), the artery that they think has the aneurysm does a triple loop before going on. See -- I even have talented ARTERIES!!!!!!!!! Either that, or they're just as screwed up as I am! I saw a shirt -- it said, "I finally got my head straight, and my body started falling apart." Story of MY life.

I'm, of course, still hoping that it ISN'T an aneurysm, that it just looks like it on the MRI / MRA, and that all will be right with the world again. Realistically, I don't know that I'm being realistic. My neurologist told me when he called -- when he was ordering the MRI and MRA that I should go into the neurosurgeon's office prepared to hear that I have to have surgery. Of course, I'm thinking that there is an impingement on my vertebral artery in the back of my neck, so I'm thinking that I'd just have to have a cervical spine disc removed. I just said, "Okay." in my cheery voice. Then he said, "Lynne, I mean that you need to be prepared that you may have to have BRAIN surgery." My voice wasn't so cheery this time. I just said, "Oh."

So, I do think we need to take a poll: If they have to shave my head, because it is going to be on one particular spot, then what should I do with the REST of it? We know that we have one vote for a mohawk, and I do particularly like the idea of the blue with the black tips. I could pull off Goth. I'd get a fake eye ring, fake lip ring, put a temporary tattoo on the shaved part. I personally think that could work. I would, however, have to shave an ADDITIONAL portion of my head, and I will, of course, film it so that I could be ALMOST as famous as Britney -- but still wear underwear. Don't want any papparazzi shooting pics of -- well, you know -- as I'm getting out of a car. Not only would it be in incredibly poor taste, but I am also a bit older than Britney! Yuck. Enough of that thought.

In all seriousness, I am scared. I really DO hope that it isn't an aneurysm. Unfortunately, I had the best neurology teacher there ever was, and I was tutored by the neurologist that is treating me when I was in school. Everything that I KNOW says that it is. I guess I'm just hoping that I'm wrong. Also, it's only 3mm. I don't know if that is large for an aneurysm -- I know it's not for large vessels -- it wouldn't even be CONSIDERED in some. I just don't know if it is large for small ones. I'm too scared at this point to look it up. I looked at the MRI films of the brain and cervical spine because I'm nosey -- like those who know me didn't know that. Then, I pulled ONE FILM out of the MRA, saw the "blip", which is what I'm preferring to call it right now, and said, "Holy S*#t." I put the film back in the package with the others, and I haven't looked at them since. That speaks volumes to me.

So, my grandmother must be helping me out. She had her stroke RIGHT AFTER my birthday party. We had walked in the door when we got the call that she had fallen. I went to the ER, and I told her that I knew what had happened, that I knew she could hear us and understand us, but that she just couldn't TALK because of the area of her brain that had gotten hurt. I told her that I promised she would be okay. She turned her eyes and looked at me as if to say, "Don't you DARE lie to me -- I'm your grandmother." When I visited her, I was asking her how she was doing, telling her she looked pretty -- she takes her left hand (her right side was paralyzed) and hits my leg. I kept talking, and she hits my leg again. I said, "I'm doing okay." Then she hits my leg AGAIN. I said, "Okay! They haven't been able to do the biopsy, because I'm arguing with the hospital over the insurance coverage. I'm taking the mitochondrial "cocktail" that the geneticist ordered anyway. I have to go back to the eye doctor in May. Is that enough?" She smiled and stopped hitting my leg! So now she is just making sure that the doctors find EVERYTHING that could be causing the trouble. It could be that, if they could get my left eye better, I could walk better and I wouldn't have so much trouble trying to figure out where everything is -- and I could get NICE new dishes without fear of dropping them off the side of the counter because I couldn't judge where it is! All my really nice dishes have had a number done on them. Sheesh -- such is life. (Karen, did you notice the Canadian reference???) It would also be really nice not to have so many bruises. I look like a battered wife. It's pretty bad. Also, I'm just tired of falling. At some point, it has become really annoying.

Thank you ALL for the prayers, good vibes, cyber-hugs -- I really appreciate -- and NEED them. While I'm keeping a really good bravado around here, I'm also really really scared. Of course, that won't stop me from cracking jokes all the way up until they put me under! I hope it's not one of those things where you have to be awake. OMG -- there is NO WAY I would not be able to keep my mouth under control. Remember the absolutely NO SENSE OF HUMOR nurses when I had my endoscopy and colonoscopy? Can you imagine if they're working on your BRAIN and not your BUTT?? The outlook for that would be bleak.

I still want a vote taken for shave styles -- the more creative, the better!

Love to you all,

Lynne

P.S. If you want my story about what an IDIOT I made of myself with the postman, e-mail me!

Hi Steve -- I haven't been on the forum much lately, but Karen called me to tell me you're in trouble -- you know us "old-timers" on the board have to stick together!

I am so sorry about what happened at your mom's. I agree with EVERYTHING Karen said. I think having your girlfriend get your things once she gets there is a very good idea. I'm sure you feel like hell physically and mentally right now. You do have every right to be furious with your mother. Don't let the gluten paranoia kick in too much, though.

I do wonder if your mother, since she obviously is ingesting a LOT of gluten, even realizes any longer the effects of gluten-contamination. Neurologically she may be STAYING in a gluten-stupor. At that point, she isn't going to either know or understand what is happening to her own body, and will continue to cross-contaminate and/or simply ingest gluten on a regular basis with no regard to it's consequences.

I don't think you need to go back to her house. You're not in a condition to approach her on any level at this point, much less to address what has happened to you as a result of staying there. Wedding or not, you can't subject yourself to an environment that you KNOW will make you have further symptoms. If you went back at this point and stayed there, given even the environmental contamination, you may have further paranoia, etc. That could end up disastrous.

My advice is much the same as everyone's: try to stay in a hostel, whatever, until your girlfriend can get there. You said that the bank let you have money -- do you need more? I could wire money to you if you need it. When is your girlfriend scheduled to come in? Does she need to come in before that, and does she have the ability to make that happen?

Physically, once you find a place to stay, try to flush the toxins out of your body. Once your head clears from the glutening, you will be in a much better place to deal with this. I agree with you about not confronting your mother right now -- First, the possibility to do irreparable damage to your relationship with her. Second, you are still in a gluten induced fog, so you may not be thinking or communicating rationally with her and SHE probably wouldn't "get" what you are trying to say if she has been continually ingesting gluten. Save that conversation for a later date.

Please keep in touch, please let us know what you need. I wish I could be there to help you right now. You have been such a blessing -- I would like to return the favor.

Take care of you -- that is first and foremost right now.

Love and Hugs to you,

Lynne

Yep . . . that little rodent is surely something. She gets so much pleasure in helping people. I know that I haven't thanked her NEAR as properly as I should. I've heard it said that the people who do the most for you are often the people you thank the least. Unfortunately I think that there are a few people that I should thank much more. Karen, are you listening????? You're definitely on the list. That cute little rodent needs to have heaps of thank you's from me poured on her!!

I love doing random acts of kindness! I just gave my medical software to a friend who has her own psychotherapy practice. I also gave her the invoices that match it and the forms to file for insurance if she needs them. This software has the capability to file electronically. The look on her face was worth EVERYTHING! It made my heart feel so good!!

I also have a girl at my favorite office supply place -- she is so intelligent, but got caught up in the wrong crowd for awhile. When I was still in practice, I would go there to get my office supplies. She and I would talk -- she liked the idea of Physical Therapy -- and I convinced her to go to college! So, she's away from the bad crowd, finding day care for her daughter, and is going to college. That makes me feel GREAT!

I also like doing things that are anonymous. Also, you don't tell anyone that you did it. That negates the value of the act of kindness. The best way to do a random act of kindness is when you get no recognition for it at all. There are things that I have done -- kind things -- that were completely anonymous. I also didn't tell anyone. I would sign the card, "your guardian angel" or "Your Fairy God Mother" or something like that. It just makes your heart feel so good.

No way!! I found out the hard way. My neurologist kept calling my gluten ataxia Celiac Disease. I had been given all three blood tests -- only had antigliadin antibodies (first "high", then "outrageously high"), as well as an endoscopy and colonoscopy. I wouldn't go gluten free because I kept saying "I DON'T have Celiac." It wasn't until my endocrinologist explained "gluten sensitivity" or "gluten intolerance" to me that I went gluten-free. In the meantime, the gluten was systematically destroying the cerebellum of my brain.

Given that I have had so much trouble with doctors MISSING things, I'm kind of thinking "better safe than sorry". I had to press for months and months to have a genetic test done when my paternal grandfather DEFINITELY had the syndrome. Come to find out? I have BOTH genes. If I found a doctor who was a little more pro-active and a little more "over" than "under", I may stick with him/her for a while, just to see . . . . .

Karen: Speaking of what Bev just said, is Terry out of the doghouse yet? I found the CUTEST little tin of Altoids yesterday , but was reluctant to purchase for fear that he's spending all of 2007 there!!!!!

Hugs,

Lynne

Would you like that biggie sized. Please drive to the bottom of the stairs and pick up your extra crispy charred corpse...er chicken. It is gluten-free as kerosine kills gluten.

EEEEEEEWWWWWWW!!!!! I am SO ashamed of good old Colonel Sanders! His memory will never be the same again . . . .

Addendum: I saw the geneticist about a month ago, and I DO have Ehlers-Danlos. Should have known . . . . . .

Costalchondritis can be caused by a number of things. One of them is a vertebral rotation in the thoracic spine. Because the ribs are connected in between the side portions of the vertebrae, if one is rotated, it twists the rib. Kind of causes it to "torque". If you can find a physical therapist that specializes in manual therapy --particularly if they use Paris or Maitland techniques, you can get them to address that.

Also, tight pectorals -- Pectoralis Major and Minor -- can cause costalchondritis.

Basically, it is an inflammation of the cartilage that connects the ribs to the breastbone.

And open heart surgery can CERTAINLY cause it!!!! Unfortunately, the techniques that are used to address vertebral rotations can't be used on open heart patients because your breastbone was split, your ribs were pulled apart (talk about rotating the vertebrae!!) then your breastbone is literally wired back together. MOST of the patients that I treated who had open heart surgery had costalchondritis. I was only able to teach them the stretches of the pecs, and how to mobilize the ribs downward --that tends to help quite a bit. (It is GREAT for singers. My daughter sings opera, and I can mobilize her ribs downward, and her ability to have better breath control is amazing.)