Monthly Archives

June 2015

Perspective

6/24 week

Hey Guys, 

Had a great weekend and feeling back to normal again! yay! Been pushing myself way to hard with running and working out (trying to get back in shape!). Blood pressure and heart rate has been low, per my usual but trying to listen to my body and rest when needed. 

This weekend, Tyler and I had a much needed date day in La Jolla. It was beautiful! Love our day dates! 

daydate!

As far as my updates still waiting on 2 more tests for mast cell, as of now all test have come back negative! yay. Looks like I may have been having some sort of extreme heart burn or indigestion.. who knows… always something right…

I have been chatting with Dr. Treyzon and a few more of my specialists and they made sure to remind me to not pursue the route of Lyme, all my tests were clearly negative (3- including the most accurate one by Igenex) and there is absolutely no need to be chasing a ghost…They all had to remind me that I am better and that doesn’t just happen if a bacterial infection or lyme is present. 

I am still working with my amazing life coach an acupuncturist Courtney O’Brien, she has been guiding me and helping me understand how to move forward and not live in fear about going backwards. We have had some amazing progress and I absolutely would recommend acupuncture and any therapy or coaching to anyone who has suffered an extreme health related illness or trama.

acupuncture

Heat is still a huge deal for me, but I am managing and making sure I stay extra hydrated and and cool throughout the day.

On a positive note my new business is getting off the ground and I couldn’t be more excited! I will share more soon when everything is finalized! Big meetings today!

Thanks for all the emails, and texts!  so amazing to have such a great community of Potsies! 

 

 

 

Perspective

Update x’s 5

Okay so sorry I’ve been MIA lately! I have befriended a few more girls suffering from POTs and have been extremely down myself… Ive been chatting with my new friends and dealing with more of my own issues! nooooooooo!!!! 5 months doing amazing then had a minor set back and a few bumps in the road the past few weeks…. Here’s my update. 

My hubby and I finally planned an awesome trip for this year September. 2 weeks in Europe-Switzerland and Italy…(My dream). I keep telling myself no matter what I WILL make this trip happen! so that the exciting good news! 

Bad news is a few weeks back after my wine tasting weekend I stated getting a swollen/hard to swallow feeling in my throat. Kinda started freaking me out, was coming and going but mostly happening after eating then started happening all the time… My lifesaver Dr. Treyzon, GI specialist told me to head to an allergist in my area asap. (since he works in LA, 3 hours away from me). I went to the allergist to make sure I wasn’t having any crazy reaction to anything and did some scratch testing to make sure. (Picture below). Everything came back normal but I did get new info on possibly having Mast Cell Disorder. A week later I went to Cedars for a visit with Dr. Treyzon and he recommended I see and ENT real quick to make sure my throat wasn’t really closing up. The ENT scoped my throat in the  office within 10 mins and said I was only 20% swollen (normal) could have been from any environmental allergy? who knows, but nothing dangerous or anything she could think of but she did prescribe an Epipen to be safe! -makes me feel better.. 

4 hours at the doctor yesterday figuring out my allergies. #nofun at least I also was able to get acupuncture. Allergy test revealed I do not have anaphylaxis to any foods. They did find I am EXTREMELY allergic to cats.  (which I kinda already knew) catch my story on my blog later this afternoon. {web address in profile} #allergies #allergic #sandiegoliving #sandiegoblogger #instagood #follow #followme #photooftheday #happy #tagforlikes #sandiegoblogger #scrippshealth

I am going Friday for more blood work to rule out mast cell. My GI specialist says it is rare and he does not think that is the case but we will test anyways…Crossing my fingers Im just having reflex  or something simple…. I just feel like it never ends….

(I also wanted to mention on a side note-I love support groups but a few I am part of have been making me even more anxious then I need to be. Everyone is so quick to instill fear and worry in others because of their own experiences I sometimes think its to overwhelming. Pick and choose carefully fear it not helping anyone).

Speaking of support groups, I am part of a lyme disease support group because of my mother-in-law and because I have been through the Igenex testing myself. Up until this point I have been under the impression that my lyme panel was negative-(Read by 3 doctors)..then on the lyme “support” page another member posted her results, which happened to be identical to mine with comments saying the person had lyme… I made an appointment with a LLMD and went to see her yesterday. Turns out my results are inconclusive (But also negative by standards, which I am still trying to figure out what this means…). I will be doing more testing for co-infections, bacterial infections and mold infections. I am thinking about taking natural supplements just in case I need to kill off anything in my body that shouldn’t be there… but I need more information so I guess, we will see what happens next…

During all this my stress levels have been through the roof and finding a way to meditate and just think clear has been difficult. I decided to start working on myself and see a life coach, acupuncturist and hypnotherapist. I am absolutely loving my acupuncture! It has been helping me destress and stay calm! (and my insurance covers it!) Life coaching has been an awesome way to start looking a my future in a more positive way, learning how to overcome my fears and anxiety of “going backwards”. 

I have to say Hypnotherapy has been wonderful as well! If you are willing to try it, be sure to have an extremely open mind, and ready & willing to change! Lucky for me I get to see one of CA’s best hypnotherapists. She is working me on anxiety and fears of the “what ifs” of my life & my visions of living more positive. She is also helping me over-come my fear of flying, this way  I will be able to enjoye the long flight over seas for our next big adventure! 

Like I said, I feel like it never ends and you need to fight everyday to feel good. When I’m good, I’m great and when I’m not feeling good, I’m really not feeling good…(I actually kinda laugh to myself when people complain about feeling sick or off….if they only really knew what we POTSIES deal with on a daily basis)…I just hope I can get a definite answer to figure out what the hell happened to me and what I need to do to move forward in life…I just hope I can stop searching soon,  as I feel like Im chasing a ghost. Hoping my doctors hang in there with me too and don’t give up…Its hard to constantly feel like your annoying doctors on a daily basis… being persistent and strong is hard! but you just gotta keep on keepin on….

Recipes

Catie’s Pasta Salad

Catie’s pasta salad recipe

Catie's Pasta Salad

Here is a guest post from one of my best friends Catie! Amazing, easy go to recipe! Some ingredients are optional! Feel free to make according to your special diet needs.

1 bag of gluten free pasta (any type or kind will work)

1 small jar of sun dried tomatoes in oil (trader joes) squeeze out access oil.

1 small can of sliced black olives

1 can of artichokes (chopped)

1 bag of broccoli

1/4 of Newmans Italian dressing (you can use more or less)

Lots of Parmesan cheese (Optional: I use a Romano blend)

Once the Pasta is cooked according to package directions, combine all ingredients together!

Viola!

Perspective

How comfortable is to comfortable?

IMG_3940

These past two weeks have been crazy busy! I have become almost myself again, minus my fear which I am still working on. 🙁

On memorial day weekend Tyler and I stayed home, and attended the memorial day party at our neighborhood park! It was catered by Phil’s BBQ. Delicious but I’m not sure the BBQ sauce was gluten free….(Funny, I was actually called out by another neighbor that I wasn’t sticking to my “diet”, funny thing is, not sure if he ever even read my blog or even know what kind of “diet” I follow..). Hello people its not a diet, its a lifestyle…. Gluten and Dairy free…. plus I only ate the tri-tip and chicken. well….I also had a bite of coleslaw and beans, bit nothing crazy. I mean I can’t be perfect with my diet all the time… which brings me to a very good point, how comfortable is to comfortable? Now that I am healing back to normal and somewhat better I’ve been sliding on my diet…. and boy have I felt the difference. 

This past weekend I hosted my family at my house for the balloon and wine festival out in Temecula. I had wine, broke my diet (ate bread with dinner) and was in the sun a majority of the day. I developed a heat rash and had to leave the balloon festival early. Once we left the balloon festival, we made our way to a few indoor wineries and had a delicious dinner. Everything was fine until the next morning at breakfast. (Sunday). I had half a cup of decaf coffee with  almond milk and the feeling like my throat was closing up suddenly happened all over again….haven’t had that since Oct 2014…. It stuck with me throughout the day and got better at night. Now Monday, I had my normal diet, green smoothie for breakfast and veggie soup for lunch and within an hour of eating I have the throat swelling feeling again! what a nightmare! I just put a call into my GI doctor and will be having a phone appointment soon. 

This all brings me back to a point of knowing when and when not to push myself. I can’t help but realize that everything I do needs to be modified for my “new” life…. Its so annoying and hard to understand but I guess when I feel good in order to stay that way I need to stay 100% on track. 

Not pushing myself is the hardest thing ever….