It's spring right?

It's been HOT here

This was *AFTER* the A/C had cooled it off! 

Really hot.  And it's only the beginning of May!  Hubby and I have been alternating watching daughter's softball games.  One of us goes and watches, the other stays home with the tiny buddy.  He isn't really interested in watching softball and I'm not willing to feed him the steady of candy to keep him seated and happy.  She loves being part of a team.  She is getting better, but is still easily distracted.  I don't know that we would do another season of this.  But it was definitely a good experience.

I've been happily back on the good eating band wagon!  YAY I feel good!  What to eat is definitely one of the most searched terms that leads to my blog, so I'm going to try to do more blogging about that.  Give the people what they want, right!  (If you like it, please disable your adblock and click one of my blog ads, help me earn a few pennies)

It's annoying to have to make food separately for myself than for the family.  It often means making two full meals three times a day.  That's a bunch of work.

I bought myself a blender.  I love my blender.  Now I juice my fruit and vegetables, put the juice in the blender, add frozen fruit and ice and then I have smoothies!!  No more weird textured fruit juice!  It's fabulous.  I need to buy myself some rice protein powder to put in these but I haven't found any locally yet and I don't really want to pay shipping on it, so it may wait until I can go to Seattle and buy it at a health food store there.  This particular concoction had apples, watermelon, cantaloupe, carrots, cucumber, blackberries, raspberries, and blueberries.  (Raspberries are higher in histamine, don't eat if you react.)

This was a dinner, the rest of the family had baked potatoes.  Theirs were smothered in cheese, bacon, butter and sour cream.  Mine had a teaspoon of Earth's Balance Soy Free buttery spread, Daiya cheddar style shreds, mushrooms and onions grilled in safflower oil with a little garlic, and chive sour cream made from soy-free vegenaise.    *Note* I have a Pinterest board where I pin recipes that I think I can make work for this diet, I usually try to remember how to make them work for masto folks.  Feel free to follow the board on Pinterest if you do Pinterest.  http://pinterest.com/drearina/ridiculously-restrictive-diet-friendly/

For Mother's Day my mom and dad invited our family over for spaghetti and salad.  I told my husband that no matter what he could not let me eat my dad's tomato pasta sauce.  Because I knew it would kill me.  I had not to that point had any success with making a histamine friendly pasta sauce. =/  I had tried a couple of vegan recipes but they called for almond milk and I think my substitution of rice milk just didn't work.  Plan A pasta sauce was a recipe I had on my Pinterest board.  And it was a giant failure.  My long suffering husband tasted it and said "Yeaaaah that's not very... that's really bad."  Bless his heart.  He made me my salad dressing, which I KNOW is a fabulous recipe.  It's tasty, make it and be happy.  Here ya go, gluten free vegan ranch from soy-free vegenaise  (I usually make 1/2 or a 1/4 cup at a time).  Then we ran to the grocery store that has a good health food section.  I bought Road's End Organic Gluten Free Chreese, you have to add some oil and extra water.  It is not the extra cream oh so yum alfredo sauce that I miss.  But it was pretty good.  I put it over quinoa shells.  I did not wind up feeling deprived.  I had pasta and salad with my family. =D

And here's another dinner potato with ranch instead of sour cream.  Food!  Yum!

So there ya go.  There's some of what I'm eating.  Potatoes are nightshades, a lot of masto people can't eat nightshades.  I can eat them irregularly.

The heat is kicking my butt.  I'm having some nasty bone pain in places I haven't had bone pain before.  Normally it's been in my shins and in my lower back (degenerative disc).  Now I'm having it in my left thigh bone and in my upper arm bones (humerus? humeri?)  Ugh.

An ant crawled in my sock and bit the heck out of my foot!!  =(  

He was still in my sock when I took it off.  I may have done something to 

him that was outlawed under the Geneva convention. 

I have been going out after dusk to slowly clear out the "flower bed" (aka giant pile of weeds) so we can put down new concrete pavers and have a walkway.  I've been wearing socks and sneakers, after an incident a couple weeks ago when I sprayed weed killer on my foot while wearing crocs.  And last week an ant crawled under my sock and got trapped!  That was unpleasant!  We just have plain old black ants, but something about them I am allergic to.  My whole foot swelled up for two days.  We put out about 2 dozen terro ant baits and now there are thousands of dead ants all over the front walk and flower bed.  I'm good with this.

That's what I've been up to.  We've been busy, happy, and doing the best we can. =D

Illness Vacation

I wish we could take a vacation from our illnesses.  Just punch the clock "Okay my week illness free starts now".  Sadly, that's not how it works in the real world.  So instead we push through and persevere carrying on to the goal.

On April 11 I had to pick up an order of chicken from a co-op.  I carried my 40 pound box a short way through the parking lot to bypass the long car pickup line.  I didn't have time to wait in the line, the pregnancy network where I volunteer was having their banquet that night and I had to move.

Then Friday afternoon I started having kind of achy back pain, that I wrote off as just muscle strain from carrying the meat.  By Friday night I was in tears and could barely stand or sit.  It was awful and I told my husband I was pretty sure it was actually a kidney stone and not a mechanical injury.  I didn't want to go to the ER, another $150 copay 3 weeks before I *FINALLY* paid off all my ER visits from last year was not on my list of things to do.

I managed to hang in and wait to see my doctor on Tuesday.  He agreed that my pain was indicative of kidney issues.  My urine had high leukocytes, which would point to a kidney infection.  He said "I would expect you to be in a lot worse shape if it was a kidney infection."  He sent the urine for culture.  Which came back Friday morning negative.  And off I went for a kidney ultrasound to look for the stone.  At this point I've been in killer pain for a week.  I have pain medication, but it was not super effective against this pain.  The doctor put a rush order on the ultrasound and I got the results Friday night.... negative, no stone, no fluid backup.

But the real kicker?  I didn't go to the ER because I didn't want a $150 copay.  I get to the outpatient imaging place and they say "If you pay your copay today we can give you a 20% discount."  Oh okay, cool.  The copay?  $150.  SERIOUSLY?!  Yes.  I was in pain for a full week trying to minimize my medical costs, and if I would have just gone to the ER I would have gotten the urine test and ultrasound there that day.  So now I owe the hospital that I was *this* close to paying off another $150.

So I go back to see the doctor again on Thursday (the 25th).  And he says that now that we've ruled out infection and a stone he's leaning toward something musculoskeletal.  And says to do a week course of anti-inflammatory.  5 days into that, still in pain, crazy crazy pain.  I am fed up.

I had my pain management appointment yesterday, and discussed the issues I've been having with the pharmacy and my insurance covering the Nucynta.  Three months ago it was a $25 copay.  Two months ago it was $44.  Last month they called me and told me it was going to be a $158 copay... it turns out that they didn't actually submit the prescription to my insurance at all.  But then there was still a bunch of drama getting them to apply the manufacturer's discount card that took the copay down to $25.

My pain doctor said "Well why did we take you off the hydrocodone?"  And I reminded her I was getting rebound headaches from the tylenol.  "Oh well, let me write you hydrocodone without the tylenol, it has to be compounded, but it shouldn't be too much."  Perfect answer!  Until the compounding pharmacy calls me... $50 copay.  So I call back to the pain clinic and they say "Okay well the doctor is recommending oxycodone without the tylenol."  And I asked if that wasn't going to be the same problem, needing to be compounded.  "No, ma'am, it's a generic prescription."  Yeah, then why didn't we do that in the first place?  Obviously a generic pill from the regular pharmacy is going to be cheaper than something I have to get compounded.

In other masto news.  I have my first UP spots on my face.  I don't have very many UP spots, there are about 4 on my right leg, 2 on my left leg, a couple on my chest and a couple on my right arm.  And now I have two on my face.  For several months now when I've flushed up I've noticed very defined spots in the flush.  Now two of them just don't go away.  =(  I know that in the grand scheme of things this is incredibly small and petty.  But I was happy that my spots were easily cover-able and I never had to worry about the "Are you contagious?" questions from strangers.  And now I'm fearful that all of those defined spots are going to turn into perma-spots.

In not masto news.  My daughter is playing softball.  She is in the 8 and under league.  Several of the girls on her team have been playing for 2 and 3 seasons, and are VERY good.  My daughter is enthusiastic and has a good attitude.  But she's has a lot to learn, and really needs to learn to focus for an entire game.  I've been bribing her with money to pay attention and not play with dirt or chalk lines when she's in the outfield, so far I haven't had to pay out.  But she's learning the value of teamwork and commitment which is what I wanted for her.

Adding Adipex, Why?

I mentioned in the last post that we added Adipex to my drug routine and that I needed to post about why.

Back in February when I went to see my doctor to get my Ativan for my flights to and from D.C. I also talked to my doctor about doing a trial of Adipex.  Adipex is a stimulant weight loss drug.  I do need to lose weight, I've been gaining and losing the same 10 pounds for the last 8 months.  I was hoping to get off the plateau.

My doctor was a little concerned that the Adipex might send my anxiety into high gear.  He made me promise not to start it until I was home from D.C.  He didn't want any cross country calls that I was in the ER having a anaphylaxis from a new drug or uncontrollable panic attacks or something.

Then, my doctor being the amazing doctor he is, he remembered the conversation we had about a year and a half ago.  Back when The Voice first came out and Mr. Hottie Pants Adam Levine was telling people to go to the "Own Your ADHD" quiz so I did.  Because I would do just about anything Adam Levine told me to do....

Um... yeah, sure I'll take the ADHD quiz if you ask me to!

I scored an 18 on that quiz, which over a 15 means you may have ADHD.  Then I did another ADD quiz, and I got an 89.5% and it said "Your selections show that you very likely have ADD/ADHD. We recommend that you consult a doctor about ADD/ADHD symptoms."  I had gone and talked to my doctor about these quizzes and that I thought I probably had ADD.  He agreed with me.  BUT he doesn't prescribe ADD drugs.  (Washington has weird prescribing laws and he likes to cover his butt.)  He told me I would have to go to a psychiatrist.  Which was too much work for me to focus on at that point.  

I kind of laugh about that.  It was a real test of how ADD I am; can you focus long enough to find a psychiatrist that takes your insurance, make an appointment, fill out new patient paperwork, and go?  NOPE!

This is how I look running away from my responsibilities.

So my doctor said... "Some patients realize that they have ADD while taking this drug, because all of a sudden, they're on a stimulant and their ADD symptoms are in check.  If you find that you need to let me know and we'll get you in to the psychiatrist to get you on long term ADD medication, since Adipex is not suited for long term use."

I've been on the Adipex now for just about five weeks.  I haven't lost any weight.  Apparently if you have ADD it doesn't work for weight loss.  

What DOES it work for?

Well, I have markedly more energy.  My brain fog is better.  I feel more alert and less confused.  And it's helping with the ADD stuff, I'm finding myself able to follow through with things (like cleaning the bathroom drawers out, I did that in the course of one day not one month!)  

It's definitely not a miracle drug.  I still find myself needing a nap at least two or three days a week.  But it beats waking up and feeling like the ONLY THING I can do is crawl right back into bed.  I still forget words and numbers and last week at the pregnancy network I wrote the wrong initials on a client's chart; yeah apparently I don't know my own last name.

Yesterday I got down on the floor and built train tracks with my kiddo for 45 minutes.  That is something I haven't felt up to doing in a LONG time.  It was great.  

Doing this with mom while big sister is in school makes a 3 year old VERY happy.

In the end, I guess ADD meds are going to be yet another thing that I'm going to regret not having done earlier.  I put off pain management because I didn't want to be labeled a drug seeker.  I keep sabotaging my clean eating because it's too hard.  I should have gone to the stinking psychiatrist a year and a half ago!!  Just like I should have gone to pain management when it was suggested TWO years before I gave in and went.  And I should have gone to a nutritionist for help when it was first brought up over a year ago!

I'm stubborn.  Clearly.

Just an Average Mastocytosis Day

Just for fun, here is what my average mastocytosis day looks like. =D

I wake up, usually by whichever kid wakes up first.  Yesterday it was by my son, he's having allergies and had a bad cough.  =(

I make the kiddos breakfast.  And then I get my morning meds

From the top: Gastrocrom, Multivitamin, Potassium supplement, Zyrtec, Topamax (the 3 little round pills), Dicyclomine (round blue pill), Adipex (yellow and blue), Budesonide, Zyrtec, Levothyroxine, nucynta

I started the adipex about a month ago, I need to blog about that, it's been such a valuable addition to my medicine regiment. 

Then I have to wait an hour to eat (thanks thyroid medication!!).  This is usually when I derp around on the computer.  My kids are eating breakfast or playing nicely together.  So it's a good time to do things that take focus, like checking email, reading my forums and web comics, writing blog posts!

Then (if I'm doing things like I'm supposed to...)  I make my morning breakfast and lunch.  In the juicer!

I made two identical, so it's like a cooking show!  Ingredients, and finished product!  Strawberries are a histamine liberator and are high in bioactive amines.  I do not recommend eating them if you have mastocytosis.  But I needed to use them up, so I used them.  Canteloupe, apple and pear are great if you tolerate them.

I had stayed up WAY too late the night before and my son had woken me up early.  So after my daughter had finished doing her homework and I had gotten dishes done and the juicer cleaned up we decided to watch a little TV.  The only "active" TV in our house is in my room, and I can close my eyes and get a little cat nap and cuddle them while they watch TV.  My little guy snuggles up in my arms and my daughter sits in the "mouse hole" which is behind my knees.  It's sweet.

After their hour of TV it was time to make the kids their lunch and get my daughter ready for the bus.  They each had a peanut butter and honey sandwich and a pear.  I mentioned my son is having allergy problems?  I bought some local honey to try to desensitize him to the pollen, I hope it works.  Then we walked down to the bus stop.  It was the first day back to school after spring break.  Yay!

Then, since he had been up *early* I managed to get my little guy down for a nap, so after doing some texting with my husband I took my "lunch" meds and laid down for a nap.  I skipped lunch because I wasn't hungry yet.

Yay Gastrocrom and Dicyclomine

Woke up in time to get oldest kid off the bus, little kid was STILL asleep!  She threw a massive tantrum because she couldn't go to her best friend's house to play, since it was a softball day.  =/  I hate when our afternoon starts off on such a stinky note.  Had to bring her home and discipline her; sent her to her room to clean and think about her attitude.  Little guy woke up and wanted a snack.

I packed up all our water bottles took my "dinner" meds grabbed all our other gear to head out to softball. 

Oh hey, Gastrocrom and Dicyclomine... with every meal!

I was going to make Krab melts for the family yesterday, but those don't pack well to the ball park for practice, and by the time I got everyone out the door it was too late to pick up Subway so they got McDonald's burgers (ugh... fast, cheap and crappy).  I had my other juice.

Totally looks like a mom van, right?  Juice!  And a Diet Coke. =P  I really have to kick that habit!!!

My hubby met us at softball, which I love that he's willing to do.  He takes the little guy and runs him around on the playground.  Which means our son doesn't feel like he's missing out.  Last night was lame though.  Our daughter's team had the field reserved, through the league with the school.  But some little league coach showed up and ran his team out on the field and said "I was here first and I'm not leaving".  Our coach was so mad he was shaking and he said he really wanted to punch the guy out or yell at him but didn't want to set a bad example for our girls.  Which I think is awesome.

Then we come home from softball, shower whichever kids need it (last night both) and get them to bed.  On Monday nights we each take a kid and do bedtime routines separately to get them in bed as quickly as possible.  Last night they weren't in bed asleep until 8:30, and we normally aim for them to be in bed by 7.

Hubby is in school right now, taking a chemistry class, so he had a lab report to write and a pre-lab to work on.  So while he did that I worked on cleaning out our bathroom drawers and cabinets, because I couldn't find a darn thing I was looking for.

Hi, my name is Drea and I hoard expired medications...

And then before I knew it the clock said it was 10:30!!

I ate a banana (high in bioactive amines, don't do this but I was too lazy to make food at this point) and took my bedtime meds.

From top to bottom ish: Gastrocrom, probiotics (three large round pills), nucynta, zantac, budesonide (pink and white), topamax (three round white), doxepin (three yellow and white), singulair (square), dicyclomine, zyrtec.

My insurance is dumb, it won't pay for the 75 mg tablets of doxepin, so instead I have to take three 25 mg tablets every night.  And they don't make 75 mg tablets of topamax and the insurance won't pay for me to have a bottle of 50 and a bottle of 25, so instead I take three 25 mg every day.  I had to take an antibiotic last month and my gut has been messed up since, so I pulled out the probiotics hoping to get it back on track.

So that's my average Monday.  It's a little more busy in the evenings now because of softball.  (Actually until softball is over all my days are a little busier...)

Tuesday mornings I have a women's Bible study I attend.  But we don't have anything in the evening and my husband has his chem lab that day and is usually out early so I usually do grocery shopping in the evening so I don't have to take the kids.  I also tend to do most of my laundry on Tuesdays if it is nice, just because it's a not real busy day.  But it looks like a lot of my daughter's softball games are going to be on Tuesday, so this may change.

Wednesday is our weird day, every other Wednesday my daughter attends school from 8:40 - 1:50, and on the alternating Wednesday she has no school.  Our entire district has early release on Wednesday so that's how they dealt with the half day K classes.  Wednesday is her second practice day.  But we also have church after practice.  So I've been taking my 3 year old to my neighbor's to play with his best friend (her son is just a couple months older than mine) for the 45 minutes between when I have to leave and when hubby gets home from class.  Then after softball the girl child and I drive down to church and I help in the 3-4 year old room.  I crash HARD on Wednesday night.

Since Wednesday is my crazy day Thursday morning I am always well prepared to feel awful.  That is usually a day when I ask the kids to play quietly in their room after breakfast.  Thursday is usually random errand day, like the bank or Target.

And then Friday my hubby goes into work for a few hours, he used to have Fridays off, but now he has to work because he takes off time for class.  He comes home and I go to my volunteer position at the pregnancy center.  One Friday a month I prep the snacks for the coming week at the church.

Keep Calm and Drink Water

Well, I didn't start eating well when I said I would.  But I did go to the grocery store and am now well stocked.  My amazing husband made me a delicious vegan dinner of stir fried vegetables.  It was not a low histamine meal but it was probably a mid range meal.  Even my kiddos ate most of it, my son wouldn't eat the onions my daughter wouldn't eat the bell peppers.

Now I am decompressing, eating some unbuttered (but salted at least) popcorn and drinking some nice cold ice water while watching my newest television obsession, Sherlock.  I want some ice cream and a margarita... but that was not the best idea.

I got scent bombed at my volunteer position today.  The center director sprayed air freshener in one of the client rooms after a baby with a dirty diaper had left.  She didn't even think about it, because it's one of those things you don't consider if you don't have the problem.  One minute I was talking to our nurse and the next I could no longer breathe.  Totally lame!  I am going to put sticky notes on all the air fresheners "Do not use on Fridays".

So tomorrow will be another day of clean eating and trying to get my mast cell burden back under control.  My daughter has a birthday party for her new BFF tomorrow and we have to get some softball practicing in but other than that I'm hoping for a quiet lazy weekend.

Ugh... why did I do that?

Peeps, jelly beans, chocolate chip cookie dough ice cream.

Blugh.

I feel horrible.  Why did I do that to myself?

Tomorrow I'm going grocery shopping for the good foods that do not make me sick.  Back to juicing, raw fruits and vegetables, gluten free whole grains.

Well... This sucks... An official UN-Endorsement

Yesterday I was doing my once a month Google of my blog to see what pulls up.  It's a good idea to see if your blog is being discussed anywhere weird.  When I found this.

Okay so what are these you ask?

Well these are two pages run by Dr. Gary M. Levin, M.D.  Who claims to have the cure for Hives and Angioedema.

So why do they pull up when you Google my blog?  Because someone has used the age old tactic of sticking a bunch of stuff in Dr. Gary's page source.  This is a good way to increase your blog traffic without cluttering up your page with random text.

Here is the page source from urticariacures.net

Oh look, there's my entry on hives, right in Dr. Levin's page source.  The page source for abouthives.net looks exactly the same.

I emailed Dr. Levin and asked him to remove my blog link from his page source within 24 hours.  He responded by claiming to know nothing about what I was talking.  When I responded with the page source his assistant said that abouthives.net is not their page.

DESPITE THE FACT that I had used the "Contact Us" Button on the bottom of the abouthives.net page to originally email Dr. Levin!!!!

Abouthives.net, urticariacures.org, and at least one other page I've found all link to Dr. Levin's main page myhivescure.org.

I am very frustrated by this.  So this is my official UN-Endorsement of Dr. Levin's product.


UPDATE:

He maintains the claim that this is not his page, that it is someone trying to rip him off and "case closed".

Yes, someone can definitely rip you off by making a page that completely mirrors yours in every way and every link leads to yours and it sells your $100 "urticaria cure".

I am not yet decided as to what I am going to do about this but I am going to do something.