Home
Are we having fun yet?
14 October 2009 @ 07:13 am






Saw this on the news last night. My heart goes out to her. This dystonic reaction is the type of reaction I have had when I am in the middle of a bad episode of the neurocardiogenic syncope...it usually happens when I have been close to passing out, and is triggered by sensory overload and the stress that the body undergoes when the heart rate skyrockets and the blood pressure drops.   The most recent reaction happened the last time I was in the ER which was the main reason they ordered the immediate Cat Scan and MRI.  The ER doc did not understand the condition, and treated me like a drug user. It was frustrating because I couldn't talk and tell the Doctor that I:   A) don't do drugs and B)  have had these episodes in the past as a result of the Neurocardiogenic Syncope.  He gave me a huge mega dose of Benedryl and I was amazed that it calmed down the episode and the seizure activity and I was able to talk again.  It shocked me because my reactions would usually last for several days and none of my other doctor's had ever suggested a treatment other than reducing stress, and getting enough sleep. I took the Benedryl over the next couple of days and it kept the monoclonic seizure activity that usually remains after one of the episodes at bay.  When I saw the Electrophysiologist,  he told me during an episode of the neurocardiogenic syncope, high levels of Catecholamines (certain neurotransmitters) can cause dystonic reactions with seizure activity and loss of speech, ability to swallow, ect.  It was the first time a doctor had explained what was happening in my body during those reactions. He also said that the Benedryl had worked because it would suppress the abundance of the Catecholamines in my system.

I hope that the young woman in this story is able to find a treatment to minimize the symptoms... and an answer to why she developed this condition in the first place. It is very tiring and frustrating when I have one of these reactions. I can't imagine living with it constantly as it appears she is...and it is horrible that for her this was most likely the result of an adverse reaction to a seasonal flu shot.  
 
 
Are we having fun yet?
02 October 2009 @ 07:03 pm

Hubby's first day of leave and he had to take an online training course, answer work emails, and write a brief.  He is supposed to be on LEAVE.  I can't get mad at him, don't know what good it would do, I don't think he has much of a choice.  It's just irritating...and disappointing.

Sorry, I needed to rant.

I do have an update on my medical crap...got lab results back on Wednesday...nothing serious, just looks like I need an adjustment to my thyroid meds. The Endo doc thinks when I switched from synthroid to the levothyroxine (after we moved) that I am not absorbing it as well, so she changed the preparation I am on. We'll see how I do on it, and if needed she is going to raise my dose. Also need another thyroid scan. Still amazes me how a little change in your levels can leave you feeling like crap. Hoping this is the answer seeing as how everything else came back normal.  I am so sick of being tired :( 
 
 
Are we having fun yet?
27 September 2009 @ 08:35 pm
I went and got my blood drawn for the Endocrinologist this week, and the Rheumatologist had a lab slip with like twelve more tests she wanted to run.  So now we play the waiting game again.  Always fun. 

Hubby finally put in a leave request. He had been waiting for a good time, only to realize that a good time was never going to materialize so he just picked a week to take off starting this Friday. 

THANK YOU LORD! 

Don't think we are going anywhere, he's exhausted and daughter has school anyhow. I think it will be nice to just be a family for a week and eat dinner together for a change.  I'm not hard to please...I just like having him around.

I better go find some wood to knock on or something before I jinx it.
 
 
Are we having fun yet?
14 September 2009 @ 04:40 pm
Hubby shared this little gem with me this weekend...

He was reading a short story to our little man from a book that helps teach toddlers little lessons on learning to tell the difference between right and wrong. In this particular story, a little boy was out at the grocery store shopping with his mother. He saw a chocolate candy bar and decided to take it when no one was looking and stick it in his pocket.   At this point my hubby stopped reading and said " Oh....no....what did the little boy do that was wrong?"

to which my son said, "He forgot to check the ingredients"

LOL!!!
 
 
 
Are we having fun yet?
05 September 2009 @ 07:21 pm
While I'm thinking about it, a friend of mine emailed me recently about a friend whose son had just been diagnosed with celiac disease. She wanted to know if I could get her started and point her in the right direction as far as resources went.  I thought I would post my response here in case anyone with celiac disease happens to come across this journal.  I know it is a daunting task at first to get a grasp of gluten-free eating.  
 
This is the website I head to when I have a question. http://www.celiac.com/ which also features a number of best-selling Gluten-Free product guides and books.  The two most important pages on this website are the safe/unsafe ingredient lists. I printed them out and keep them on hand. I say they are important because reading the ingredients and knowing what to look for is a critical. It can save a ton of money, because fortunately there are a lot of non-specialty products out there that are gluten-free. Here are the links to those lists: 
 
Unsafe ingredient list:  http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html
Safe ingredient list: http://www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html
 

Another helpful idea is too search the websites of "popular food brands".  Many now have links to gluten-free lists. Here are two examples:
 
Hormel's Gluten-Free food list: http://www.hormelfoods.com/ASSETS/491F45BBEB39475FA2740EB35E0D3F1E/Gluten%20Free%20Products%200409.pdf's 
Frito Lay's Gluten-free food list: http://www.fritolay.com/your-health/products-not-containing-gluten.html
 
Eating out can be interesting, but many chain restaurants have Allergy/Nutrition Guides on their websites...most of them are located under a "nutrition link".  This is true for such chains as Chili's, Uno Chicago Grill (they have gluten-free pizzas there!), Outback Steakhouse, Bonefish Grill, ect. so if you have a favorite restaurant, check their website to see if they have a downloadable allergen menu. Many of the menus are updated monthly so keep that in mind. It can be time consuming, but there is a lot more information out there now than there was even a few years ago. Since we are talking about a child, here are a few fast food links to get started:

Mcdonalds: http://nutrition.mcdonalds.com/nutritionexchange/ingredientslist.pdf
Wendy's: http://www.wendys.com/food/pdf/us/gluten_free_list.pdf
Burger King: http://www.bk.com/cms/en/us/cms_out/digital_assets/files/menu_nutrition/IngredientsDeclaration.pdf

That's it in a nutshell.  I'll have to do a dairy-free post like this one of these days. Fun fun fun.
 
 
Are we having fun yet?
21 August 2009 @ 05:38 pm



 
 
Are we having fun yet?
16 August 2009 @ 08:05 pm

It's Sunday night, and hubby is packing again.  I've had several people ask me how we are dealing with the constant travel.  The answer is simple: While it isn't the most ideal situation, it could be worse. He's not deployed. It's better than not seeing him at all.
 
It really is that simple.

Sure, I could bitch and moan, but it would be a terrible waste of energy...energy that I need to locate my chocolate.

 
 
Are we having fun yet?
I'm feeling better...great...good. Life goes on. I realize I have done nothing but blog about my medical stuff lately, but it has so dominated every other aspect of my life for the past month...it seemed hard to escape it...and I thank you all for your encouragement and friendship.

I need a change of topic.

So what should I talk about??? 

Ask me a question or two or three...anything.  I know I don't do meme's or polls like ever...so now is your chance. lol.  

Seriously.   
 
 
Are we having fun yet?
12 August 2009 @ 01:45 pm

and loving this song today.



 
 
Are we having fun yet?
08 August 2009 @ 03:11 pm
The Florinef seems to be helping!  Woo hoo!
 
 
Are we having fun yet?
05 August 2009 @ 11:17 am
Hubby (who canceled his trip this week BTW) took me to see my Primary care Doc yesterday.  I went over what happened in the ER, and the doc thinks seeing the Neurologist at this point is counter-productive since my MRI and the CAT scan were normal.   When asked about the great "Lupus versus MS debate"  he didn't have much to say except that yeah...it's going to be hard to pin down.  In any case...with my family history he strongly suspects my adrenals are involved right now. So he drew blood for some tests ...and when I say he drew it...he did. I have never had a primary care doc that drew blood from his patients...and he seemed frustrated saying if tricare would cover it he would ship me off to the Mayo clinic.  He was concerned because I have had two episodes now in less than a month...both of which were within a day of getting my period, and the fatigue, nausea, and weakness aren't resolving. So still waiting to see the Endo...in the meantime he put me on a low dose of Florinef (fludrocortisone), and I am scheduled for an MRI of my adrenals on Friday.  More fun. 

I am praying the Florinef helps.

I mean...Hello...I am ready to feel better here!!
 
 
Are we having fun yet?
03 August 2009 @ 05:19 pm
Yup. Taking up residence under the front porch. Lovely. Well...it is better than inside the house.

I hate ants.

the little buggers eating bait...DIE! DIE! DIE!... )
 
 
Are we having fun yet?
31 July 2009 @ 03:34 pm
I had an episode at the Rheumatologist appointment (though, I wasn't sure what was really going on at the time)...ended up at the ER for an MRI, Cat Scan. They were normal. Have to follow up with the Neurologist...still waiting to see the Endocrinologist. The Cardiology stuff has been put on hold until I see the other specialists.  I'm frustrated...sick of feeling run-down...and tired of the toll this is taking on the family. 
 
 
Are we having fun yet?
27 July 2009 @ 09:58 pm

I saw this for the first time today. Makes me wonder what the babies would have done after drinking Red Bull. LOL 


www.youtube.com/watch
 
 
Are we having fun yet?
26 July 2009 @ 07:00 pm
 

These are so yummy.  Mmmmmmmm nom nom:)

 


 
 
 
Are we having fun yet?
22 July 2009 @ 08:08 pm

He is...I'm not being harsh.  I despise male doctor's who dismiss women's medical complaints.  If I rehash the entire appointment it will just piss me off again.  When "panic attack" was one of the first things he uttered, I knew it wasn't going to go well.  In hindsight, I should have just left.  When I told my primary care doctor what happened, he said he wasn't surprised...that the cardiologist has rubbed several patients and doctors the wrong way and that it's just his personality  (or lack thereof).  The one good and only helpful thing that came out of the appointment was the referral to the Electrophysiologist.  They also want me to do wear a 24-hour Blood Pressure Monitor and do a 30-day Holter Monitor test.  Fun.  

My Primary Care Doctor suspects that I am coming out of a Lupus flare-up (truly an "Aha" moment).  But he also wants to rule out  Adrenal Insufficiency.  He referred me to an Endocrinologist to get that tested, and my follow-up with the Rheumatologist is next week, so we'll see what those test results say. 

So now it's a waiting game, but at least I am feeling better...just in time for hubby to take off again on one of his trips. Blah. Thank God my Mom lives so close,  she has been a huge help lately. 

Hope you all are doing well...time to play catch-up again on journals.  Ugh...I hate falling behind.

:(

 


 


 
 
Are we having fun yet?
18 July 2009 @ 11:56 am

  Been meaning to post an update...but I'm still not feeling well and everything seems to be taking way too much effort.  I saw my primary care on Monday and she did an EKG which was normal, and my thyroid levels are normal so that isn't playing a role, but my resting pulse was elevated so she put me on a beta-blocker.  It seemed to work well for the first few doses and then it just made me feel worse so I had to stop taking it.  Still symptomatic, having to take breaks and rest a lot, can't drive more than a few minutes without getting nauseated. I don't have time for this crap.      

I see the cardiologist on Monday. I hope he can figure something out...cause this sucks.

 

 

 


 
 
Are we having fun yet?
08 July 2009 @ 01:08 pm

Living with neurocardiogenic syncope isn't always easy. It only really bugs me when I am in the middle of an episode, and the medication I take usually keeps those to a minimum.  It's been months since I have had one, and there really is no rhyme or reason to when they occur. I used to think it was primarily related to level of stress, activity, or the heat, but it's not always that simple. I was leaving the mall yesterday when a hot flash came over me and I knew it was an episode coming on. I could feel my heart racing and I started sweating...so I took some extra medicine, grabbed a drink and started eating some potato chips for the salt.  I had just eaten lunch though and taken my medication an hour before...so I should have been fine.  Anyhow...I felt a little better so I drove the kids to my mom's since it was only couple minutes away and that's where I was heading anyhow.  I knew she could help me with the kids and with hubby gone Mom and I decided it would be best to go get jammies and stuff for the kids so we could just stay at my parents.  Well...when we went to the house to feed the cats and pack a bag, we realized the house was just way too hot. But, since I had left the blinds open all afternoon with the sun pouring in the house, I just chalked it up to that.  So I closed everything up and really just wasn't feeling well enough to even care about the AC at that point.  

So we spent last night at my parents...and I felt better this morning...less disoriented. I started my period last night, so I'm guessing that must have had something to do with the episode...that and the heat probably. In any case, we went to check on the house this morning and as I am sure you have guessed already, the AC is not working.  They can't get anyone out to look at it till tomorrow, so we are camping out at my Mom's today.  Hubby is flying in later tonight.  We should probably just stay here again...I don't know. I am so tired.

I need a hug. 

 
 
Are we having fun yet?
05 July 2009 @ 02:22 pm
I would really like to be able to go to Sunday Mass as a family without having a panic attack because some little kid sitting near us is waving around a snack loaded with nuts.  Today it was a little girl sitting right in front of us screaming for her dad to open her Nature Valley Trail Mix Granola Bar. Doesn't matter where we sit in the church...the front...the back...we are always in front of or behind a kid munching on something suspicious.  I don't know what to do.  I guess I could talk to the priest and ask him to make an announcement on our behalf, but I don't know if that is the right thing to do.  I'm torn...Is it too much to expect everyone else to change what they do because my son happens to be severely allergic to something?  Maybe we should just stop going.   All I know is I'm tired of worrying about it constantly.

Blah.