Travel, Parenting & Masto - not a pretty mix

We went out to Boston to celebrate our dear friends, Andy & Lori's, baby naming for their beautiful twins. The three of us flew to Boston (via Atlantic City - what a pleasure!) and things were going beautifully... on the surface. Just under the surface my anxiety was rearing it's ugly head. Pushing it down, I pushed forward determined to just suck it up and deal (instead of doing the intelligent thing like taking my meds).

At the synagogue, Dylan understandable was getting antsy so I took him out of the chapel to wander the halls. He hadn't gone to the bathroom in a while so we went into the rest room and I told him it was time to potty. He didn't want to go. I told him to just try. No! Dylan goes into meltdown mode. Full on screaming at the top of his lungs, kicking, hitting. I wanted to die. I took him out of the bathroom hoping it would help. Nope. Took him downstairs (chapel was on 2nd floor). Nope. Outside, more melting. Meanwhile, 45 minutes has elapsed and it doesn't occur to my darling husband that Dylan and I have been gone a while and that maybe, just maybe, he should check on us.

By the time I am able to get Marc's attention my anxiety is in full blown attack mode. I manage to get his attention, he walks out, I shove Dylan at him and lose my shit entirely as I walk away. Cried for over an hour, burning my eyes... yet again, setting of a bad masto event with major flushing and hives. Finally get back to the hotel, get meds in me and calm down. Now... since, my stomach has been in shreds. The only good thing about having this diagnosis is that when something happens in my body, it makes more sense now than it did in the past. Someone recently asked me if I found that my symptoms have been worse since my diagnosis and I said no - just now I know what they are instead of some weird pain, nausea, etc.

I'm so tired. I can't wait to see Dr. Castells on Friday. I don't know what I expect. Maybe she'll be able to waive some magic wand and have all this stuff make sense.

One thing is clear... I need to get on a regimen of anti-anxiety meds sooner than later (yes Ms. L, I will be calling your pyscho-pharmacologist shortly). I need to do something as I really can't live like this. It's not fair to me, it's definitely not fair to Dylan or Marc.

Trying to resolve the past and look to the future... all without losing my mind

My beloved sister who I love with every part of my being asked me to do something. She wanted to do a grandchildren portrait for my Mom for Mother's Day. Ohhhh, what a fun idea! Then I realize, that means my brother's (the one we're in reunion with) would be included. Not that they shouldn't be. It's been over two years they've been in our lives and while we are still not good enough to celebrate their children's birthdays with them (it would upset my SIL's parents I guess), my mother would move the moon and stars for them.

Because it was my sister who asked, I agreed. I then bawled my eyes out. My heart aching with the knowledge that this is something my father would have loved but will never be part of. Not by his choice either. Oh, and I still have a hard time looking at the youngest because he looks exactly like my father.

I have to figure out how to forgive him. I really want to but every time I go down that road, so many issues pop up in my path, blocking that road.

I guess I'm glad it was my SIL. She's easier for me to take for some reason. The kids were amazing and my Mom is going to plotz when she sees the portrait we had done. The kids were all so well behaved (mine being the most photogentic ~preen~) and I even ordered some for myself. It's going to take work but my goal is to have them on display by Dylan's birthday.

Sorry I've been MIA

Been going through my (hopefully) last go around with testing before my appointment with the world renown Dr. Castells. I had emailed her asking what tests she'd like to see prior to my coming up there since I am doing this trip out of pocket and would rather have my testing done and paid for by insurance.

So my list is as follows....

Blood Work
24 Hour Urinalysis
Bone Marrow Biopsy
Bone Scan
CT Scan (with and without contrast)
Skin Punch (can't wait to get these fucking stitches out already).

Now we wait for the results (bone scan normal) and we have our appointment at the end of May.

_______________________________________________________________________________________________________ Now on to the important things... Dylan

OMG he's getting so big! I can't believe he's going to be 4 soon. He amazes me every day with his intelligence, his beauty and his humor. Just when I think I can't possibly love him more... I realize I do.

Today we had our final meeting for IEP services. He's going to receive speech and behavior therapy. He's starting a new day care center and then a week later will begin to receive his services. I'm a total basket case. I think the transition will be harder on me than on him.

The teachers at his new day care center are heartbroken. I can't say I blame them.

Having a hard time wrapping my head around things

You know... most people who have a chronic condition or a disease, there is a process. If you are suspected of having a tumor, they do a biopsy. If they find "x" kinds of cells, that means it's malignant and you have cancer and treat it with a number of different things. If they find "y" cells, it's benign and you just keep an eye on it. If your husband has low sperm count and poor morphology and you have a high FsH chances are you're not getting knocked up naturally, if at all.

I get that... diseases and their processes usually make a lot of sense to me. This mastocytosis bullshit??? Not so much. Trying to understand why one person's levels are so much lesser than mine yet she can't leave her house otherwise she shocks. I'm trying very hard not to obsess about this... I really am. But I'm failing miserably. I want to understand this. I want to know what this all means. Unfortunately, I think I'm going to have to wait until I meet with Dr. Castells at the end of May (blech).

Oh, I emailed her yesterday and asked if she wants me to have any other tests prior to seeing her. I need to get an abdominal CT and a densitometry (off to google that one). I love my regular doctor. She is amazing. The most caring doctor I have ever met in my life. Everyone I have sent to her is just blown away by her. It's like you are working with a friend, not a doctor. I forwarded the email to her to set up the tests (or issue the prescriptions so I can set up the tests).

OK - ENOUGH WHINING - on to the fun stuff.

Potty training is going really well. Averaging 1 accident a day. Seems to be a poop issue. He doesn't want to poop in the potty but he has gotten much better about sitting on the potty for a spell. Yesterday, he had no accidents but we aren't sure if it's a Dylan didn't poop at all yesterday or a Dylan pooped on the potty and no one told us. Oh well, I asked the teacher to check w/the teacher who worked w/him yesterday and to just make a note as to whether or not he did. I don't want to end up with a backed up boy.

Maybe I should change the name to "Tales from the Potty"

We started potty training this weekend. Full force. Just pulled the band aid off and put him in big boy underpants on Saturday - no more pull ups (at least not during the day). It went well. Many lessons learned... such as...

The reason you put little boys into briefs instead of boxer briefs or boxers is because things fall out of boxers/boxer briefs as we learned when Dylan, who was playing in his yelled "Mommy! Poopy!" We ran upstairs expecting to help him on the potty. Instead we found poopy.... all over the floor! Apparently, he had an accident and it fell right out.

We asked him what happened and he said... "Mommy, poopy fall out of my tushy!" He seemed almost surprised by it.

This is going to take a while isn't it?

Bang A Gong

Dylan has been fancying himself to be the next Ringo. He insists on bringing his drumsticks into the car where he proceeds to clap them together and then drum on the seat in front of him. He's not half bad either (for a 3 1/2 year old).

He's changing day cares to one near our home. We are very excited as it's a Jewish day care center so he'll be getting a Jewish education and there is a big focus on fun and physical energy at this school which is something he really needs. He'll also be going to a local school for speech therapy which is great.

I can't believe he's almost 4 years old. Where does the time go??

Hurray!

I got an appointment with one of the country's leading mastocytosis physicians. Dr. Castell in Boston. It sucks but there aren't many doctors who seem to really know and treat this disease. I have been trying to wrap my head around it but the second I think I have a handle on it - something new appears on my computer screen.

I know, I know, I need to step away from the googling. I can't help it. I need to understand what is going on. I had a horrible reaction to anchovies the other night (at least I think it was the anchovies). Then I had a horrible reaction to the horrible reaction. My body was actually vibrating. I thought I was crazy but then I posted it on my listserv and I got a bunch of people saying "oh yeah, that happens to me too". Worse part, it's not the first time it's happened either.

I want to see this doctor so I can find out how I can stay healthy. People who have the advanced systemic mastocytosis are so very very sick. I have indolent systemic mastocytosis so my goal in seeing Dr. Castell is to ensure that I remain indolent. Hopefully her answer is better than my doctor's which was.... "some people stay indolent their whole lives with very few flairs while other people go from indolent to advanced. There is no rhyme or reason to it... it just happens".

Bullshit. I don't believe that. There has to be a way for me to stay healthy whether it's eating or avoiding certain foods, taking meds, exercising etc. Whatever it is - if it means I'll stay healthy... I'll do it.

The Kindness of Strangers

It never ceases to amaze me... the kindness of strangers.

Since receiving my diagnosis of systemic mastocytosis, I have, of course, sought out every source of information I could find. Unfortunately, there aren't many of them. I have found two groups on facebook with absolutely lovely people who have been more than willing to not only answer my questions... but answer them honestly. I have also signed up for two listservs and while I don't participate greatly with them, I read the compassion they have for each other and it warms my heart. Especially after having such negative feelings towards the "Big List" as the Guatemalan adoption listserv is/was known.

Today was my first day back to the gym. I feel the need to be kind to myself and this is one of the ways I like to show myself kindness. By giving my body the exercise it so desperately needs. I haven't worked out in a few months for fear of causing a reaction.

Now, being in the fitness business, I know the owner of my gym. However, I still think he would react the same to any member. I explained my situation and told him I'd be bringing my epi pen with me... just in case.

First, he was so very happy to see me back. A number of people mentioned they had missed me which felt so good! I gave him the bag w/my epi kit and told him I had an emergency card in the kit w/my allergies, condition, etc.

He took it upon himself to go online, pull up a video on how to administer an epi pen and had his staff watch the video. He was very discrete and let his staff know to keep an eye on me. I genuinely felt safe while I was working out. It was great and I did a half an hour on the eliptical which is pretty good considering I hadn't worked out in several months. I also pre-medicated which appears to have helped with the hives so a good experience across the board!

The Bad Wife

I feel like such a shit. It's Marc's Mom's birthday today. We were supposed to go over tomorrow night for a party. She's been sick all week with a fever and stomach stuff. Well, he just called me. Tomorrow night is cancelled and him and his brother thought it would be nice to bring over Chinese food (I really have to avoid MSG) and hang out.

He's picking me up, dropping me off at home and going back into town w/Dylan. I haven't been sleeping well... ok, I never sleep well but it's been bad lately and I don't know if it's the stress of this masto shit or if it's the masto. I just feel beat up today.

Marc undersatnds but I still fee like a shit.

I can't think of a catchy title

Brain fog has taken over. I'm totally overwhelmed by this entire thing. I think I have a handle on it one second and then it's lost by conflicting information I find. I spoke with my doctor yesterday. She wants me to see a specialist in Boston and also wants me to registered at the NIH for trials (not happening).

I ordered my MedicAlert charm and a bracelet from Lauren's Hope. They have pretty chains for medical bracelets and if I have to wear one of those suckers - I want it to be pretty damn it! I like the MedicAlert system. I gave them all of my information (and I mean ALL of my information) and they have it in their database. Gd forbid something were to happen to me and I was alone, they would contact Marc. They have a list of my meds which is growing daily - so far we have H1 & H2 inhibitors, an antihistamine nasal spray, wellbutrin and the occassional klonopin thrown in for bad days. I also carry an epi pen and we may be adding a mast cell stabilizer to the mix too. They also have the name of my doctors and also my insurance info. Pretty cool.

I wish I understood this disease more. It's the not knowing that's driving me nuts!

Test was done.

The test was done on Tuesday and I have to say - all things considered - it wasn't that bad. For any of you who may be on the National Bone Marrow Registry having a biopsy is really not that bad. I'd rather have that than another HsG ~shudder~.

Hopefully I'll have some answers in the next day or two. In the meantime, for your viewing pleasure, in case you've ever wondered what kind of instruments are used in a bone marrow biopsy.....

Basically, they give you lots of local (which was the worse part), they do a 1/16 of an inch incision, then they use the big thingie to get down to the bone and then they use the metal thing w/the top to it to drill into the bone then they suck up the marrow through the tube. I swear, when he was aspirating the marrow - it felt like it was coming up through my toes, through my leg and out my hip.

All in all, I've been a bit sore. Nothing terrible. It's definitely subsided today. So here's to hoping. The doctor doesn't think it's leukemia or even systemic mastocytosis but, after he saw my legs, agreed it could be cutaneous.

I'm bouncing off the walls today

I have been up since 3:00 a.m. On top of being apprehensive about my appointment with the hematologist today, I'm getting sick. I have a raging sore throat and I'm congested. Hopefully, whatever needs to be done today won't have to be put off because of this. I don't know how much more waiting my brain can take.

Missing old friends

Kim Kim & Wessel - are you lovelies still around? How are you?

What does all of this mean??

I'm so lost right now. This disease... this mastocytosis... what the fuck is it? So far all I know is I get hives, have anxiety, am a lousey sleeper, have a tryptase level of 70 and now... a N-methylhistamine level of 267 (normal is 30-200).

I'm healthy. I have a few minor symptoms. I haven't shocked (anaphalaxis) except for one episode where I may have shocked in 97 or 96. I've had some weird stomach things about 10 years back that could be masto or could be a virus.

Shit, now that I am obsessing about this... I had a weird thing about 15 years ago where I couldn't eat much and dropped like 50lbs. Stomach issue or masto? Your guess is as good as mine.

What I can't figure out is this.... am I sick? Seriously. I'm in pretty good shape. I normally spin 3x a week (stopped because the heat rashes me up and I'm trying to avoid known triggers), my cardiologist wishes all her patients had a heart like mine. My dad's pulmonologist says my lungs are strong. My biggest medical issue to date has been infertility.

I read stories. Stories of people who "shock" every 3-6 months without warning. Their blood pressure drops and wham, they're out. They've spent years trying to figure this shit out after suffering horrible illness. Me? I have hives. Pain in the ass yes, life threatening no. But was there a time... a time when their lives were like mine with just small little symptoms that were just irritating? Did I just get lucky to find an allergist who has knowledge of mast cell diseases and this is where I'm heading???

I have a girl's night out scheduled for Saturday. I'm a bit concerned about driving up there myself. At least now I understand the pre-cursors, etc so if I start feeling oogie, I know to get off the road and call for help. Still....

Marc has his Valentine's Day gift orders (we normally don't get gifts but)... as soon as we have a definate diagnosis.... we'll get me a pretty medilert bracelet.

Today was rough. Mom called to tell me my father's brother was dying. I wasn't close to him. In fact I was quite angry that when my mother called to tell him his brother had passed, all he could talk about was his medical shit. Well, I guess his shit was pretty bad too cause he has stomach cancer and hospice is being called in. I cried a lot today. Not so much for him (although no one should die that death) but more for his sons. I know that pain. The pain of losing a parent. It just brought it all up again. I was at work, not in a "safe" place. Shove shove shove the emotions down, get through my meeting, get through a few calls when my insides said, sorry - no more room in here and threw the emotions back up along with a nice hivey rash on my upper arms and a full out panic attack. One H1 and one h2 inhibitor along with half a klonopin and some deep breathing exercises I came back from a close call with my epi pen (much to the dismay of my coworker who is dying to stab me with it).

The though of going to work tomorrow is just hard for me right now. Part of me feels like I need a few days in bed just being alone to get this all straight but I know that that is definitely not the right path for me. I have 6 days till my appointment. 6 days till I can get some answers as to what this thing called mastocytosis means. It's going to be a looooonnnngggg 6 days.

Happy Valentine's Day

A happy Valentine's day to everyone still hanging around this silly blog. I had such a wonderful weekend.

Marc had Dylan "sign" my card. On the envelope Dylan drew a picture of me, Marc, Dylan, the cats with a circle around me which represented him hugging me. I had Dylan do the same on Marc's card. It was too cute. Marc made me dinner after Dylan was in bed. We just sat in the dining room, lit some candles and had a nice romantic dinner. We just talked, ate and drank the night away. When we were done we both said "we need to do this more often".

Dylan's day care was closed today so yesterday he went to Bubbe's house for the evening. Two of his cousins found out and insisted they had to go too. My Mom said that the kids were great with Dylan and enjoyed taking care of him. Even the little one who is 6 months older was careful with him which is very sweet.

While Dylan was with Bubbe, we took advantage of the grown up time and went out for a nice dinner. I had a bit of a reaction to something. I'm hoping it wasn't the seafood - part of me thinks it was psychosomatic but I took a benedryl just in case.

Today my Mom took them to the local aquarium on my pass. They all had a great time. My Mom called and sounded so exhausted! Happy but exhausted. Now he's at my sisters hanging out till we get there.

Probably one of the dumbest things I've said in a while

But I think I'd rather deal with IF than this stupid mastocytosis. With IF, I could say to my fellow suffers... "My FsH shot up to 35" and they would understand exactly what I'm talking about. In IF, the medicine makes sense to me. In masto - it makes no sense to me whatsoever... at least not yet anyway and it's driving me mad!

It seems like this is a relatively "new" disease so I don't know that there is any set protocol in dealing with it. It seems that many of these sufferers just go into anaphalactic shock at the drop of a hat. In fact, that's how they discovered they had the disease. That scares the shit out of me. I've made sure that the people who sit near me during the day know how to use my epi pen and where I keep it but what if I'm alone or worse, alone with Dylan? I don't EVEN want to think about it.

Another thing that worries me about this is that there doesn't seem to be specialists for this disease except the ones who first identified it (and who are not in my area). I'm spoiled. I see specialists.

Gotta love those "aha!" moments.

So, being the super-hypochondriac I am, I have been researching the hell out of mastocytosis. I've found a few blogs (which I need to add to my bloglines) and just reading some of their reactions as it related to this disease has given me some "aha" moments.

TMI warning - Like the time I was so sick I was vomiting and suffering horrific diarrhea (at the same time), severe flushing, back pain, fainting. Yes, I know it could have been a virus - but it also could have been a histamine load - it happened to me 2x.

Also, another masto sufferer mentions that she believes her masto was triggered after a reaction to an antibiotic. I had a horrible reaction to cephlesporin. Now I'm trying to remember if I had this issue with hives prior to that reaction. I really don't think I did.

In case you haven't figured it out - I'm a little freaked out by all of this. I'm given bits and pieces of info but no where to plug it in so it can make sense. I'm actually looking forward to talking to the hematologist.

Craziness

Blogging has definitely fell by the wayside as parenting has become my #1 priority. I do miss it and I think I'm going to try to start things up again. So let's see.... The kittens are great! It's the first time I've had cats that had claws (both Shadow & Saffie had come to me declawed... front and back) and I have to say that we've had very few problems (except for when they try to climb up Marc). I swear Buttercup (gray) is Shadow reincarnated. She is, by far, the sweetest little thing you've ever seen and I walked into the living room one day to find Dylan with his head resting on her belly watching TV. Wesley has very little patience for Dylan. Dylan is doing incredibly well. He has a bit of a delay with his speech but we are in the process of getting his IEP set up so within the next few months - he'll be getting all the help he needs. It's been an overwhelming process for us but we're just taking things one step at a time. Me? Doing well except for one leetle thing. For the past ten to fifteen years, I'd get these random hives. Around the time this all started, I noticed that I had developed spots that look like freckles on my thighs. I pointed it out to a dermatologist once... jackass told me it was fat deposits. Well, it looks like I may have mastocystosis which is a rare disease where your body produces too many mast cell. From everything I've read, it's not a big deal. I have a 24 hour urinalysis to do on Sunday, drop it off Monday, then hopefully we'll know for sure and go from there. If anyone who may be reading this (Gd bless you if you do) and has any knowledge of this disease, feel free to chime in.

A new additions to the family!

Easy there folks - it's not what you think :)

After losing Shadow this summer, we decided no more pets for a while. Then we went to Colorado to visit Marc's family for Thanksgiving. His Dad has two wonderful dogs, a cat and a visiting cat. Dylan was in heaven! Played with the cats and dogs almost non-stop. One morning, on the cats decided to wake us both up for a snuggle at 6:00 a.m. Marc looked at me and said "you're going to think I'm crazy but...." I laughed and said "I miss it too".

Introducing the newest additions to our family... Buttercup (gray) and Wesley (orange) who joined our family thanks to the rescue efforts of the Camden County SPCA..

Poop in the Potty - Poop goes in the potty!

I have no idea who's in this video on You Tube - I love the song and so does Dylan. Apparently it made an impact because when Marc and I were away this weekend we got a call from my Mom.... he pooped on the potty! I think we can officially say we are in full potty training mode :)