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CaliSparrow

Member Since 01 Dec 2012
Offline Last Active Jul 27 2014 10:33 AM
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#916267 My Heart

Posted by CaliSparrow on 16 May 2014 - 01:48 PM

I'll be thinking positive thoughts that you get some answers soon that will make you feel better.
 
(((hugs)))  :)


Thank you! I did the stress echo today and it went well. The doctor said there was nothing concerning on my EKG. My heart rate stayed low & she said she was worried she'd have to install a pacemaker and then it rose a little. I laughed and said her words were magical. She kept encouraging me with "You have to get to 85% or else I'll have no choice but to put in a pacemaker" and I kept going. When I was tired she told me to go one more minute or else at that point, I'd need a pacemaker. The technician told me to think stressful thoughts, lol. So I hung on tight and the doctor called out, "82%, 83, keep going, 84, 85 done!". When I laid back down on the table, the technician said, "Look how fast it's dropping" and the doctor said, "Yes, I see that".

Anyway, she said my heart remembered my athleticism from the past and that she was encouraged by what she saw today. She said she'd need to look at it further but she thought whatever was causing the low heart rate & other symptoms wasn't because of my heart.

This is a relief. Every heart beat is vital! Before now, I've been thinking about the children in Calcutta and have reflected on just how many happy memories I've had of life. I've been more than a day-tripper here on this earth and it is good.

Monday is a sleep test and then preliminary testing for MCAS. With every heartbeat now, I hear "Strong heart. Strong heart. Strong heart". <3
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#913712 Mast Cell Activation Syndrome (Mcas)

Posted by CaliSparrow on 23 April 2014 - 07:14 PM

my mistake...page ten.
 
and I have given this paper - hard copy and digital via email to all my doctors.
 
Thank you TH :)


That must have been the page right after I got scared or bored ;)

Thank you both!!
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#913355 Starting To Realize Hurt Feelings Aren't As Important As Personal Health

Posted by CaliSparrow on 21 April 2014 - 09:26 AM

I'm sorry some of your family members were inconsiderate yesterday. Back before I understood how vigilant I had to be, I sent an email to Original Pancake House to find out more about their "gluten-friendly" pancakes (I know, I know). They sent me the most impressive response. They explained all the reasons why they did NOT want me walking in their door. They went in-depth into how long flour hangs in the air and how they don't dedicate towels or utensils, etc. They went into detail on the many ways I could be cross-contaminated by their restaurant. They underlined and bold certain sentences for extra emphasis. I showed it to my mother-in-law. She asked if I would print it out for her and I did.

Before reading your post, I thought my husband's family broke the mold on the emotional intelligence scale but now I'm thinking my MIL passed around the memo! Before that she was frustrated when I couldn't eat her food. She derives pleasure from feeding her family.

Family can be complicated and sometimes it takes longer but eventually, the change (you) becomes normalized and people adjust. If someone doesn't adjust, they have a problem and it's not yours to solve! It took one or two of these situations for my health to weigh more than not hurting someone's feelings.

Experiencing another's reaction does serve as a nice built-in barometer for potential friendships!

I hope you feel better soon.
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#911140 Why Do I Have Symptoms From Activity?

Posted by CaliSparrow on 02 April 2014 - 08:45 AM

Everyone has made some very good points. Having several viewpoints to consider is quite helpful. We are made up of a set of systems and having sensitivities can make it rather tricky.

I put doctors on a different level than regular folks. They spend many years learning and honing their craft. If you are sick, your lab numbers show multiple deficiencies, you get shingles twice in two months, and you have years of ongoing complaints, it's not because you want attention or that you just need to relax. Not that I don't need to relax, ha, but yeah, I do expect more from someone who makes a career out of deciphering someone's health situation. If a random person tells me to relax, I consider it because it is a stand alone observation and know that it may not be the whole picture, whereas when a doctor says it without explaining the anomalies or offering a way to correct them (especially knowing what severe Vitamin D deficiency can do to the immune system and nervous system), then I believe I've been relegated to the "hysteria" category. There are good doctors out there. Some of the other ones need a tune up. Anyway, hopefully my doctor misadventures are OVER.

As far as the wall dust goes, there could be many things in there to cause symptoms to a sensitive person, and in some cases, it could be wheat paste. I wiped down surfaces and a lot of my itching went away and have had a few other symptoms calm down. Maybe I worked out some nervous energy. Maybe having a clean house lowers stress or maybe I rid the areas of something that was bothering me.

I also took a Himalayan pink salt soak and that helped me a lot. My eyes still have the AI look but I am feeling better and clearer than before, mostly just tired and stiff. I've asked the people around me to ease up on bringing me their stress issues. It's time to acknowledge the myriad of life-altering situations I'm currently in and to build the boundaries required to care for myself. I think that'll go a long way too.

At this juncture, I think stress (physical or mental) plays a role in how my body reacts to things with which it's sensitive. It just stands to reason that if I'm stressed, my body goes into reactive mode and if I try dairy or whatnot while in that state of stress, it's going to be more on guard and ready to fight than if I'd spent a month in Kauai. It's like owning a Ferrari and wishing it had the maintenance of a Toyota. I have to care more about my vehicle. It's not a bad vehicle, it just requires more care and I am going to begin acknowleging the benefits I get from taking care of it properly. Sometimes there will be times when it won't cooperate and I do believe that random flares for no particular reason may occur. You can remind me of this the next time I'm confused and suffering though I will be determined to find the culprit. Sometimes I'll find one. Sometimes I won't.

I am feeling better and am focusing on what is in my control. Working on letting go of what's not...

Thank you for your support everybody.
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#910381 Need A Dr. Referral In Long Beach, Ca Area?

Posted by CaliSparrow on 26 March 2014 - 07:47 AM

To be fair to Dr. Harmon, I never met him. It was a nutritionist who works with him that told me what was required. If I hadn't have been so sick, I would have kept the appointment but because of the malpractice that I I incured over the years by other doctors, (this is truth), my husband did not want me to hurt myself in order to get a diagnosis for something he could see quite clearly was hurting me. Not to mention, we were told about the human error in the testing process and Dr. Harmon was recommended as a doctor who knows how to decrease the potential for human error on his end. It wasn't Dr. Harmon who did harm but a whole lot of other doctors before him without which, I wouldn't have gotten as sick as I did and have so far to go to recover.
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#910110 Like Button?

Posted by CaliSparrow on 24 March 2014 - 01:34 PM

I wanted to second this, and add a thanks to all the moderators for being so on top of things, knowlegable, and supportive. This site wouldn't be what it is without you. You're awesome!


Ditto!
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#909408 This Is Down To Being Glutened Isn't Is?

Posted by CaliSparrow on 18 March 2014 - 07:01 PM

It takes a few days to hit me as well although sometimes I get a few suspicious symptoms right away. I also have multiple symptoms (pretty much the ones you listed) and agree with Notme that it feels like being hit by a train. The symptoms do seem more severe since I went gluten-free even though I was extremely sick beforehand.

It's shocking to find out how many things have gluten in it and how often we pop things in our mouth. That was a big eye opener for me and about the time I felt well was about the time I was glutened again the first year. It does take about 10 days to two weeks for my symptoms to recede and I end up catching whatever is going around and then a UTI so due to that it drags out for a while. My doctor told me that'll get better the more I've healed.

I'm glad your daughter gained some height. I stretched everyday for a year to gain an inch at her age. I'm thrilled for her on that front.

Here are a few things that helped me from the start:

How to cope with a celiac flare:
http://www.livestron...a-celiac-flare/

Jane. Anderson writer for about.com - excellent articles
http://celiacdisease...erson-79825.htm

Good luck to her!

Cali
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#909313 Unable To Cook!

Posted by CaliSparrow on 18 March 2014 - 10:14 AM

Julie,

Why not take the meaning of "topic" and "blog" literally and vent your aggravation in your blog where people are more likely to offer well-wishes rather than suggestions? That way, a bunch of time & energy isn't spent on someone who just wants to vent (and not wanting suggestions). These people who have a lot of good advice can then give their time and energy to people who need it and want it. It's a win/win/win: you get to vent, others get advice they could use and people get to help someone who seeks it.

When you think about it, the topic section technically supports discussion and the blog section doesn't. I believe it's set-up this way for a reason.

top·ic [top-ik] Show IPA
noun
1.
a subject of conversation or discussion: to provide a topic for discussion.
2.
the subject or theme of a discourse or of one of its parts.
3.
Rhetoric, Logic. a general field of considerations from which arguments can be drawn.
4.
Also called theme. Linguistics . the part of a sentence that announces the item about which the rest of the sentence communicates information, often signaled by initial position in the sentence or by a grammatical marker. Compare comment ( def 6 ) .

blog [blawg, blog] Show IPA
noun
1.
a website containing a writer's or group of writers' own experiences, observations, opinions, etc., and often having images and links to other websites.
2.
a single entry or post on such a website: She regularly contributes a blog to the magazine's website.
verb (used without object), blogged, blog·ging.
3.
to maintain or add new entries to a blog.
verb (used with object), blogged, blog·ging.
4.
to express or write about on a blog: She’s been blogging her illness for almost a year.
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#909010 I Am A Miserable Mess After Eating Out Last Night

Posted by CaliSparrow on 15 March 2014 - 12:41 PM

I'm sorry you feel poorly after what was probably an evening of "normalcy". I do not eat what others prepare. Most people do not have a grasp on what contains gluten unless they've gone through this themselves. Those who have become proficient in handling social situations recommend taking the first serving from the dish you bring so as to avoid cross-contamination issues (like someone sticking their gluten fork in it while serving themselves.).

Because of the long course of illness before going gluten-free, I developed 55+ intolerances to other foods. None of them equal my body's response to gluten but a few have some pretty big reactions (like dairy). It's not uncommon to have an intolerance to dairy products. Some people can reintroduce it after sufficient time has been given for healing the gut.

When I fall ill, I remind myself that it's only temporary and I rest a lot. Give yourself the kind of nurturing, loving care you would want for a loved one and go very easy on yourself. The following article has helped me:

http://www.livestron...a-celiac-flare/

I hope you feel better soon.

Cali
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#874153 The Stuff Doctors Tell Their People...sad

Posted by CaliSparrow on 12 June 2013 - 08:59 AM

I had a doctor tell me in passing that Celiac wasn't an autoimmune condition. I told him Celiac is the only autoimmune condition with a known trigger. He had to turn around in order to gather himself. It was a good day.
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#858974 Given Up

Posted by CaliSparrow on 17 March 2013 - 08:06 AM

Your best is YOUR BEST regardless of what anyone else does! It is a difficult lesson to learn but an important one. Trust me, I've spent a lot of time wondering why I seemed to struggle more than my colleagues until this was uncovered. You might read The Four Agreements. It's a short, simple read but such wise life information.

Be sure to check your vitamins, toothpaste, mouthwash, shampoo, etc. If you can make it to a nutritionist who KNOWS Celiac, do so.

Many Celiacs don't make it to college. I think of all my experiences there while not understanding why I was always sick or having accidents. oy! A counselor told me to turn each negative I said about myself into two positives i.e. instead of berating myself for being late to class, acknowledge myself for GOING to class or even for being at school at all.

I don't think you're experiencing anything all of us haven't gone through at some point. Don't be too hard on yourself. Most of us would never talk to a friend the way we talk to ourselves. Learning to treat ourselves with compassion is a lifelong journey.

Keep your chin up and congratulations on your schooling. You may have to work harder but you are stronger for it. Remember that because it's true even if you don't yet realize it. Hang in there.

Blessings,

Cali
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#857221 Am I Just A Wuss? (Staying Home After Gluten/soy/whateverings)

Posted by CaliSparrow on 06 March 2013 - 09:17 AM

I think anger should be put back under control here. This is a support group. That means it's here for everyone who is hurting to get things off their chest especially to not burden friends & family. Not quite sure what po'd Gemini off so much here. It must be personal. Do some work with the shadow and forgive others who are learning or on their own path. They represent a part of you. No one has the same story and this isn't a place to compare how great you are to others who are suffering. When I feel good, I don't come here. When I don't, I do. It's a place of discovery or just a place to vent. All should feel welcome especially when they don't feel well. Especially then!
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#848880 Ferritin Rising Since Going Gluten-Free!

Posted by CaliSparrow on 16 January 2013 - 05:27 PM

Hi folks,

I am so happy! Went on the gluten-free diet in October (to feel better like everyone talks about) and was that ever an eye opener! I honestly had no idea that this could be my problem and really knew nothing about Celiac AT ALL!

My labs just came back since going gluten-free (albeit that is a struggle all it's own) and my Ferritin and Hemoglobin is rising with NO iron supplementation! It's a miracle! My hematologist of three years (who has been pressing me about my GI doc missing something) just called THRILLED. When I told him I was not taking supplements but had merely gone gluten-free, he said, "I hear you, I hear you. Happy New Year dear!".

This journey has been so long. I've spent so many years sick and, no, I don't have a crystal ball but just to THINK this is the answer, well, I am doing cartwheels (in my head because, Lord knows I don't feel well enough for the real ones YET). But I finally have hope.

I'm sure I'll have more to share as the days go by but thank you for your support during this process so far. It is quite the crazy journey at the beginning (WOW what a life changer) but I am so looking forward to continuing the healing process. Thank God for the "fad diet"! It ain't a fad to me. It's a gift.

Sorry for blurting but today is a good day :)

Cali
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#848859 Of Small Jaws And Orthodontists

Posted by CaliSparrow on 16 January 2013 - 02:45 PM

I'm so glad it worked out for your son. It's always uplifting to read that someone's health is doing better!
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#847648 Gluten Reactions Getting Worse, Not Sure What To Eat After Exposure.

Posted by CaliSparrow on 08 January 2013 - 05:26 PM

This helps me during flares: http://www.livestron...-a-celiac-flare

Good luck!
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