Thursday, January 5, 2012


Today I threw a little caution to the wind, and may well end up paying for it, but it was worth it. I took my daughters to the hair salon to my favourite Hair Goddess, Laura. Hattrix on Pembina Hwy. in Winnipeg is FABULOUS place to go if you have allergies/sensitivities or Mastocytosis because they care. Laura de-latexes her shop and doesn't wear any perfume the day that we come in. She's wonderful. As is her salon-co-Goddess, Michelle. And it doesn't hurt that they are both gorgeous women to boot.

My 10 and 13 year old beauties had their heads massaged, their locks loved and their mops shaped nicely and are ready to go back to school in style. And more importantly, they love the way that they look. They are happy.  I caved and went back to red, lopped a few inches off my mop and my husband LOVES my new 'do'...I didn't have time to love myself up yet because after our appointment, we had to rush off to my Doctor's appointment, so I didn't really get a chance to 'settle' in to my new look or play with some make up or anything.

The appointment with my family Doctor was...sobering.

I went in there for refills on my prescriptions for Topomax for migraines, sleeping pills and to discuss perhaps other ways of managing my migraines (coming off Topomax...only been on it since Sept.), the sleeping pills and perhaps some alternatives to handling my incessant nausea and vomiting? My Doctor was pretty blunt with me. "You are a very sick woman, and we are not changing a THING." Not until he talks to my Immunologist anyway. And she's not talking to anyone until I see the Endocrinologist about the Addison's Disease/Adrenal Insufficiency.  (Hopefully then, they'll all be speaking to each other???)  

Here's the low down I got:

Sleeping Pills: I'm a sick woman. I'm on Disability for a reason. Sleeping pills only work for so long and then no longer work (I've been on them for about 4 years now...) SO...have to take them for 4 days with a 3 day break. Pick my 4 days I want to sleep in a week and pick my 3 days I don't want to sleep. It's no big deal if I'm zombie woman for 3 days or so, apparently....

Topomax: No adding or taking away from the med regime at this time. This med. keeps me from being in bed 2-3 days a week with migraines. The fact that it impairs my cognitive function is no big deal for the world at large at the moment. Apparently I'm not writing any PhD's or Theses at this time, so I'm no great loss to the world at only job right now is to remain anaphylaxis free and out of hospital for a second week in a row.  Don't need cognitive function for that, apparently....(excuse me while I wipe the drool up off the side of my face.)

Vomiting/Nausea: I have Gravol and Stemetil in pill and injectable forms for this problem. My Doctor tells me that Stemetil is a powerful antinauseant and SHOULD be enough to ward off the problem. If it isn't, then it's only a problem IF I'm not getting enough nutrition, I'm losing weight and my electrolytes are imbalanced. I give him an example of a typical sort of eating pattern is "I ate an egg and toast this morning; i puked up dinner last night, ate yesterday morning, puked up dinner the night before, puked up lunch and breakfast before that, kept dinner in the night before but just about passed out at the table, puked all day before that and 3 days before that, sipped on Pedialyte but spewed up bits of it intermittently."  He asked if I'd lost weight. I said I didn't think so. One of the conundrums that Doctors often find hard to believe with Masto. is that we puke and have diahrea a lot but still manage to gain a lot of weight. We don't understand it. There's some theories that the meds we are on put on a lot of weight or that we are in some sort of starvation mode but...the jury is out. He shook his head and said medicine has virtually no caloric intake so it can't really make you gain weight. Hmm, my ass tells a different story. He asked what I weigh. So I was honest. The last time I stepped on my Mother's scales, it said I was 228lbs. AHHHHH!!!!  So he said before I left today I was to be weighed. Whatever. So I got weighed. His scales said I weighed 211lbs. So now I have to be weighed each time I come in. And I had my waist measured. I felt like a bad child.

We also had an interesting little interlude about my Immunlogist and Staff. He asked when I was seeing her. I said I had managed to see her Dec. 23rd.  Originally, I had had a November 16th appointment but had suffered anaphylaxis on November 15th and was too sick on the 16th to go and her secretary was less that nice about it.  Her 'rebook' time, earliest appointment, was March 7th. Despite numerous call backs for cancellations, NONE were available.  So, I said I had called and 'threatened her secretary.' The first words out of his mouth were "don't ever do that to my staff."  I was sort of joking when I said it. I mean I didn't REALLY threaten anyone.  But then I said, without thinking, "I don't NEED to do that your staff. You have great staff. Your staff are friendly and accommodating and nice. No need to say things like 'I wonder what Dr. Hicks is going to say on March 7th when I finally get to see her and I've been having anaphylaxis once a week since November and I tell her that her secretary wouldn't let me see her?" He then asked me how the appointment went. I felt like a naughty school child.

In fact, I felt like a naughty child the entire appointment.

I shouldn't let THIS be the focus of my entire day because I spent a WONDERFUL evening visiting with a dear Winnipeg friend of mine who has since moved to BC and is now working in a BC Medicinal Marijuana Dispensing Pharmacy.  She educated me ALL about how the system works, how the different grades of marijuana are helping people, what they do, how they MIGHT be able to help me (instead of prescription drugs???) and showed me her license. Boy did I learn a lot.  I was under the impression that marijuana was ALL THC but it has other properties it in it that are great for pain management, nausea, etc. HOLY DINAH!!!! AND you don't have to smoke it.

We also talked about other healing modalities, so it was a well rounded conversation. And a visit well overdue. I really enjoyed my evening with her. 

After reading some other blogs, I'm feeling rather shy about my blog. It's not all that insightful, witty or poignant. I realize this might be in part due to my cognitive impairment but I just don't have it in me to be anything more than I am right now. So this is it. Warts and all.


kat said...

I have mastocytosis too, I also get migraines. I am on Propananol which worked amazingly at the begining but just now I can feel them coming back.

And the point you raise about weight aplies to me. I can have accute symptoms and still put weight on. I just don't get it. I wondered briefly if it was fluid but I doubt it, who knows?

How horrible for you to feel like a 'naughty child'. I have felt like that in my GP's office, especially where my weight was concerned as before I was diagnosed they didn't think I had anything serious, just a bad diet..I didn't but couldn't convince them other wise. My consultant is good, It was such a relief to see someone who understood my symptoms.

Oh And I read a lot of blogs...don't worry! Your blog is very good. I have lurked for a while.

WinnyNinny PooPoo said...

similar issues with immune problems not as bad as yours also the puking business. Found out I had bacterial overgrowth of the small bowell. very very strong antibiotics helped. Injectible phenergan pill version phenergan nor zofran helped me. Hoping you get everything coordinated and are able to stay home intead of in a hospital.

Echomouse said...

Hey Woman, about this...

"After reading some other blogs, I'm feeling rather shy about my blog. It's not all that insightful, witty or poignant."

Your blog is all the things you think it's not. It's valuable. Truly.

I've been where you are, feeling that way. I was drained and felt I couldn't put words to what I wanted to say. About anything. I had too much else to focus on and deal with emotionally and physically. That may be why you're feeling this way about your blog...because right now, you have to focus on YOU.

You don't have to entertain anyone or worry about enlightening anyone about anything. Just write. You're naturally gifted with so many talents but writing is the one I know best about you. So just do it. Just be yourself. You're fabulous and I think your blog in particular is excellent. Write when you feel like it, otherwise, don't push yourself about it. That's all I'm doing, or going to do now that I'm getting back into it.