19
Feb
11

Goal of the day: Do not stroke out.


Oh yeah.
So I go on Enbrel and my RA is amazingly in remission.
Dude. I RAN up the stairs the other day.
Thor said, “Heather. You just ran up the stairs.”

OHMIGOD!
Cool!

But for some wack-a-doo reason, my blood pressure is freaking out. AlrightalrightalRIGHT.  STOP LOOKING AT ME LIKE THAT.  Ok.  I have been cheating, people. A teeeeeeeeny bit.  I admit it. I thought I would test out the waters since I have been on the new meds.  I got a little cocky and decided to shove some ion SO2−3 in my mouth.  See what happens.


Funny.  It didn’t look like this in the grilled cheese sandwich I shoved in my mouth.

 

I think all this evil sulfite compound is doing is shaving important hours off of my life. I called my loving, adorable and very talented Dr.Mike (and Facebooked him.  Oops. He might just kill me at my appointment on Monday. Stay tuned for the results.) and he is going to fix me up but good.
I also talked to my Rheumy nurse to rule out this as a side effect of Enbrel and she said no but she was concerned about my BP (it’s hovering constantly around 160/107) but she told me to just take it easy this weekend…“lie in a darkened room and relax all weekend until you can get in to see Dr. Mike.”)
Oh, that’s rich. HA.  HA HA.  Stop….stop making me laugh…snorting….my rock hard abs hurt from laughing so hard….milk spittake ensues.
There is no resting in a dark room.  Not over here at the residence of  666 Chaos Lane, in CrazyHeatherville, USA.
I am a mother of three wild children, a vocal recital to run today…overnight guests coming and and a lacrosse game, just to name a couple of things on my dance card for the next 24 hours.
DAMN YOU, Regal Theatre movie pretzel with a side of cheese!
I CURSE YOU, baloney sandwich on Wonder Bread white. (Oh, hot dayum, that tasted good.)

So I am medicating myself with advil and much later, in my darkened room, a glass or 2 of wine.

*********************************

Is my BP high from the food?

We will see. I am going cold turkey and see if it will come down.  Is my body just really pissed at me because I am taking Enbrel and it won’t let me swell?  So now it like, ok bitch ,that’s how you want to play it….ZAP!  (blood pressure spike HERE!  and HERE!….and just when you think it’s going down to normal…HERE!)

I do have a really swollen lymph node in the armpit of my….armpit….lovely, no?  And it really hurts.  I feel like crap so I might just have some little bug. Enbrel basically kills my immune system and kids have been sick all around me this week.   Seriously.  Like one kid at a Valentines party sneezed right on me.  It was all over my arm.  Gag.  That, and Alpha sneezed on the butter the other day.  I mean it.  For reals.

Wish me luck, wish me willpower, wish me to live through the day…happy weekend everyone!

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8 Responses to “Goal of the day: Do not stroke out.”


  1. 1 Tracy
    February 19, 2011 at 5:04 pm

    That sucks, for real – the blood pressure thing was how I first got diagnosed with the sulfite sensitivity in the first place, so I would not be surprised if that was it. I have tried approximately every blood pressure meds known to man – and check it – some of them actually made my BP worse – it appears that one of the kinds of bp meds has a VERY little known side effect of causing allergic reactions to get worse – my doc literally emailed me while she was in a lecture at a conference with they guy who figured this out and stopped that medication! If it helps I am on amlodipine besylate (10 mg) and I do not react to it at all.

    And you wasted your precious sulfite blood pressure death reaction on – baloney? on wonder bread? You should be eating freaking eggs benedict or blue cheese slathered pasta in alfredo sauce with garlic freaking bread and a glass of real wine. From Italy. If you waste away another reaction on a flipping pretzel you are dead to me.

    • February 22, 2011 at 1:07 am

      “If you waste away another reaction on a flipping pretzel you are dead to me.” God, I love you.

      LOLOL I love how everyone is dissing my cheating choices…I know they are lame. But, look at them and think about it.
      I am the mom of three small children who is always in the car.
      So I have no time to cook anything. I have had even less time lately to go to the store. Especially places like WF or Trader Joe’s where I can get my stuff. So when I needed to run the other day, I grabbed a baloney sammy. And when I hadn’t eaten in 12 hours on Friday and there was no time before I had to sit through 2 hellacious hours of Justin Bieber in 3-D for my daughters and I thought I was going to pass out for lack of food (and dizzy from a 12 year old on a movie screen trying to sing in my face all 3Dish), I went with the pretzel and processed cheese.
      If I could have cheated on something highly slutty involving garlic, olives and fancy cheese, I would but alas, I went with the wonder bread. 😉

      Also, T, I take Amlodophine!
      I take it for my reynauds and it seems to help my BP at night after I take it but it’s still bad in the morning. Saw the glorious, illustrious and adorable Dr. Mike today and he may increase mine to 10ml if I don’t see any improvement after going cold turkey again.
      That’s right, people. I am back on the sulfite-free wagon starting tomorrow.
      I am wearing a holter monitor right now because my heart is “pausing” but hopefully it is nothing to be alarmed about.
      I

  2. 3 kara
    February 19, 2011 at 7:03 pm

    That does stink! I have to agree with Tracy! You wasted a reaction on pretzel, cheese and baloney!?!?!?! SO, not worth the reaction! Though, I’ve been there, done that….sometimes you just have to cheat….but if you are knowingly doing it, at least make it worth it! 🙂

    I’ve not had the high BP symptom (thankfully!), but have had EVERY other symptom! Haven’t had to use my EPI…yet, close, but not yet! Sorry you are going through all this, I know it SUCKS! Hope you get the BP thing figured out!

    FYI, I’m the niece in Missouri with the aunt in Hawaii that commented on the “throw in the towell or raise the towell” entry. Thanks for blogging about this crazy thing and keeping it real and having a sense of humor while doing it!

  3. 5 ElfGoddessSabine
    March 31, 2011 at 2:56 am

    Hi fellow sulphite allergists, I am sooo happy to have found you. I’m on the couch today having eaten an unidentified morsel… my face feels tender, eyes slightly swelled and finger webbing soft. I feel overwhelmed because I’ve been extremely cautious these past weeks… I’m really happy to find you all so I don’t feel like a wierdo and I feel less like my whole body system is crumbling, that there are other people that are managing this.
    I’ve had sulphur allergies for three years and unfortunately they seem to be getting worse, two weeks ago I ended up in ED with an anaphalactic reaction – eyes wouldn’t stop swelling, heart racing, passing out… reactions. I have an epipen now but didn’t enjoy the effects of adrenalin so I’m really hoping I don’t have to use it again. Also have prednisolone to take if it starts coming on… heard that it makes you hungry,,, drats cause I don’t know what to eat. Feels like thats the most vulnerable time when you’re real hungry and past thinking clearly.

    Blessings Sabine.

  4. 6 ac
    February 1, 2012 at 1:46 pm

    Just a question: did you find out if the Enbrel was causing the bp spikes? I’m having the same problem, and I did find stuff online that said Enbrel has a rare side effect of high blood pressure. I didn’t realize it until recently when someone checked my bp here at work (I work with nursing professors) because I was having chest pains. Turns out my bp was like 200/110. I ended up in the hospital within 2 weeks for the spiking bp even after a doctor’s visit and bp meds. And it’s been under control for a couple of weeks until I took my Enbrel shot last night. It had been 2 weeks since my last shot because the specialty pharmacy was back-ordered and I just got my shipment yesterday. Within an hour after my shot, I started having the telltale bp spike signs, so I checked it. 200/117. I took my evening bp meds and it went down to 160/90, so I laid down and chilled the rest of the night. This morning it was back up to 200/100. Took my morning meds, and had it checked just now, and it’s 157/95. I’m going to go on a limb and say it’s the enbrel. I hope the spike is just the day I take the shot. I might have to replan how I take it so I have the time to lay down and not do anything

    • February 2, 2012 at 7:11 am

      Oh dear. That sounds familiar.

      I want to call you Clay. Or Bizzle. Or Clay-Shizzle. But I don’t know your name, so I am really liking Clizzle.

      Dear Clizzle,
      Let me give you the shizz on the nizzle.

      Rising BP seemed to be one of my biggest symptoms of consuming sulfites.
      Since I have been on the Enbrel, my BP has been great. Not great news for you to hear, I am sure. BUT. It did almost completely get better when I watched my processed foods intake. I am not kidding. I am NOT a huge believer in daydreams, UFO’s, sweaty massage, spirits healing your blood flow or saucy leprechauns. But I do believe in this.

      Poor man’s example: Before Enbrel, I would eat, let’s say a frozen pizza. Within 4 hours, I would feel tired, dizzy, flushed and my BP would spike. I would also feel a bit anxious and out of sorts. Hello, not THAT guilty for the extra calories. The biggest symptom I eventually had was that in less than 4 hours, my body would full-on attack a random joint, let’s say a shoulder or a knee. In less than 4 hours, I could not move it. Borrowed a cane from the neighbor. Crazypants.

      Now with Enbrel, when I first started, my joints loved me. Everything seemed to appear almost immediately like I was a normal person. But my BP would still spike. That was the lone symptom I would have. I have been on Enbrel for almost a year. My BP is actually very pretty to observe. The one thing that it didn’t like was my liver. My numbers popped up a bit (I asked 3 drs about my love of wine and they assured me that unless I was downing a bottle of Absolut nightly, it wasn’t my love of a nighttime bevvy.) I am now on a “break-y break” from Enbrel. My liver functions are almost back to normal and I seem to be in what they call “in remission”. When this happens, I immediately ignore all blogging and computer duties and I clean my house like a mad woman. But I have been to this rodeo before and it could come back at any moment. If I start typing badly, it’s because suddenly, I have lost the use of my fingers.

      I love Enbrel. For reals. Put me on a commercial. But…I am on a bit of a break from it cause, like I mentioned before, it did not like my liver. So, I am moving on to greener medical biologic pastures. (ye, Dr. Mike you warned me. I owe you $1.47) I hope for you, Clizzle, that they can get control over your BP because everything else about it seems to be kind of like a miracle drug.

      PLEASE let me know how you do with all of this.

      PS: I do take Benicar nightly for my BP, but I feel like I have not had any problems with my BP for a very long time.
      There is always someone around here to listen, so chin up, little person and good luck with your journey.
      XO
      Heather

      • February 2, 2012 at 7:15 am

        EEK
        Want to mention that I am on Enbrel because I have been diagnosed with an auto-immune disease called Rheumatoid Arthritis and that is WHY I take/took Enbrel. The sulfite allergy is a total goofball side issue (but VERY real) and it genuinely exasperates my RA. I do not take meds for my sulfite allergy…I just try really hard, and often times unsuccessfully to eat CLEAN.

        This has been a word from our sponsors.


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Heather Moran

Crazed sulfite-free woman.

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