jump to navigation

Back in Town April 7, 2007

Posted by spacemom in : Fun with Crohn's Disease , 3 comments

We are back. It has been a long strange trip. I have many things to discuss. But first and foremost, I must point out that we are not keeping kosher this year. Crohn’s and no bread is not okay…. So until we are in remission (we, yes, it is a family disease), then we are not keeping kosher. We are doing the best we can, why do I feel so guilty when I know that any rabbi would give an okay for skipping the kosher for a health issue?

The hope springs… March 15, 2007

Posted by spacemom in : Fun with Crohn's Disease , 7 comments

The hope starts as a seed. After years, it seems like there is no hope left to be found. The pain, the medicines, the diagnostics. Family members seem ignorant of your pain. They have no clue. Little things they say cut like knives as you try to remind yourself that they just don’t get it.

One day, a doctor can give you a name for it. You cling to that, a diagnosis. But will that be enough to get to the end state? You start with the simple treatments. It should show signs of working in a few weeks. The theory seems sound. Someone always knows someone’s brother’s sister who had it work for them! But the first treatment fails.
And then the next one.
And the next.

As you proceed down the line, the procedures and drugs have worse side effects. More damage to your body. Higher risks of cancer and other things.

As the needle is placed in the arm, the thought goes through your mind, "is this worth it?"

The journey of infertility and the journey with Crohn’s are eerily similar.

Jay started r3micade 2 weeks ago. There is improvement. Not gone, oh no, the Crohn’s is not in remission, but there is less blood and far less pain in the evening. He can actually read stories to the girls with them on his lap without wincing in pain.

There is hope. The next transfusion is  Monday. Each takes 3 hours and then he will have 3 weeks off this time.
This may actually work. Please please please, let this medication work…

We STILL suck! March 1, 2007

Posted by spacemom in : Life...otherwise, Depression, Fun with Crohn's Disease, In A Family Way, Parenting 101 , 2 comments

Hey! Guess what? If your oldest child (Soleil) gets car sick, you should probably NOT allow the younger one (Luna) to play with Leap Pad in the car. Because the MINUTE you pull into the parking lot at daycare, she will start barfing her pumpkin muffins. And her older sister will start screaming "EW!! She’s throwing up. I want to get out" And you start screaming back "THE CAR IS MOVING! GET THAT SEAT BELT BACK ON!"

Oh yeah, we discovered this yesterday. Jay cleaned her up. I got Soleil in school, came out, Luna started crying that she was hungry. Hmm, is she sick? or car sick? Drop Jay at work with instructions to let my boss know that I will be working from home and in for the 4pm meeting. Get a bagel (Thanks Dunkin!) and she ate it all. Then get home and she starts to jump on the mini trampoline. Okay, this kid is fine. So I get on-line, get some work done, and after 2 hours of Nick Jr., a bath and lunch, I called daycare and they agreed that it sounded like motion sickness and she was welcome to come for the afternoon (YEAH!)

Get her in, then rush to my office. Get a coffee, get some stuff done, go across the city to a meeting.
Whew!

The days are just crazy. My parents called about a week ago with the pronouncement that they were visiting Mar 1-7. So I am picking them up at the airport today. They called home this morning to alert us that their plane has broken and they were being put on a completely different airline. Lucky for me, they are coming in later, not earlier.

Jay is set to start the new drug on Monday for the crohn’s. However, a NEW drug was approved on Tuesday. He has a message into his doctor as to if he should do the first drug or the new drug. There are many reasons for both and many reasons against both. We just have to wait and see.

To be honest, this crohn’s stuff is much like infertility. We research the next great treatment. And we wait. And we see. And we pray that this one will work. There are no clear answers as to what causes crohn’s and people constantly tell you to stop stressing. I wish this was easier overall.  Jay lost 7 pounds from the noravirus, but he still has the moon face and he feels terrible.

I started the higher dose of cymbalta today in hopes to stave off the nasty dark place that I visit each month. I can just see how much fun that with my mom will be…

So, how are things with you?

BTW:- I haven’t ordered my kitty machine yet. but soon! and I plan on doing place mats and nice cloth napkins as my first project. You know, STRAIGHT LINES!

Co-payment hell February 21, 2007

Posted by spacemom in : Life...otherwise, Kids, Fun with Crohn's Disease , 3 comments

Yesterday, I read this post at Raising WEG. It was a very timely post as Luna awoke this morning covered in spots.

I called and got a morning appointment. We suspected, and it was confirmed, to be a reaction to the antibiotic she was on. Why was she on an antibiotic? For the staph infection she got on her finger while I was away in Florida. Turns out she chewed her cuticle while Soleil and I were gone. Jay saw it, put neosporin on it, and we watched it. By the next weekend, it was weeping green, so we got her into the doctor. She went on an oral antibiotic. I tell them that she is allergic to amoxicillian. Her sister and father are allergic to it as well. They all break out in spots.
The doctors insist that a young child grows out of those and we should use this antibiotic that is related to amox.

This has been a strange month for doctors. First, Soleil had an ear infection, $10 co-pay. Then the finger, $10 co-pay, plus today, $10 co-pay. Jay saw his doctor this month, $10 co-pay, okay, $40 in co-pays.

For us, this isn’t a big hit. But Massachusetts is requiring health insurance for all residents. This could be terrible for some families. The price of individual coverage was recently released as $380 a month. This is what a person would need to scrape together to get their own insurance under law. Think about it. Can you find an extra $380 a month? How about if you are single and trying to live in a high rent area?

When many decried this price, the industry replied with a $300 a month plan, but this isn’t much better. The original plan was for something to be offered at $250 or less a month.

We are in a position where we really need to fix our health care system. The small businesses claim that they shouldn’t take the hit on health care. I see their point, but what about the little guy who has to choose between buying health care and paying rent?

Food for thought.

The problem with crohn’s February 15, 2007

Posted by spacemom in : Fun with Crohn's Disease , 5 comments

To be honest, it was hard to find a title for this post.

Jay saw his specialist on Tuesday. They have decided that the anti/pro biotic thing isn’t working and it’s time for "R3micade". This is a drug that is given intravenously. The idea is to get him hooked up, starting in March, 2 hours a time, every 2 weeks for 3 infusions of this drug. They will check for side effects, they will test for liver function and things like TB.  IF this works, he would then go to weekly shots at home. The doctor was honest and said that 1/3 of the patients go into remission. 1/3 have relief, but need other treatments, 1/3 have no improvement. Well, let’s hope he is in the 67% that gets some form of relief with this medication.

I know, this isn’t about me, but I hate this disease. I hate seeing him in so much pain. I had the norovirus last week (that was my yuck). I gave it to Jay. For me, it was a horrible time. For him, painful and horrific. One of the ulcerated spots in the colon ripped open again because of the virus. He’s in pain every night when he lays down to bed. I have had people ask about surgery, but the honest answer is that it is a MAJOR surgery and so you remove one spot that is damaged. If you don’t remove the cause, another spot will become damaged.

I want my Jay back. The one who doesn’t have temper flare ups because of the damn steroids he is on. The one with the lean face (he has the steroid moon face now). The one who can rest and play with the kids in the evening. I hate this disease and what it has done to him. He feels old. And he isn’t….

Please hope that this med works. He’s been in a 4.5 year flare up. This just sucks…

Life in the fast lane February 6, 2007

Posted by spacemom in : Life...otherwise, She Blinded me with Science, Depression, Fun with Crohn's Disease, Travel, I dream of sleep, In A Family Way , 2 comments

Oy! Some days, the dragon wins. Today is not one of those days, but it started like it.

First, I have to fix the photos above. For some reason, they came out funny and three photos are on top of each other…

Let’s see, last night, I went to work out at the gym. Jay and I came to an agreement that I could work out on Monday nights and Saturday mornings (and I am going to add Thursday nights in there too). When I came home, Soleil was at the door to the garage screaming, reaching for me. Oh shit, what is this? I picked her up and Jay told me that her ear was bothering her. After 20 minutes of ear piercing screams that had MY ears hurting, I got the on-call doctor to tell me that giving her Tylenol and motrin 3 hours apart overnight was the best thing and to get her in to get checked in  the morning. Sure enough, she has an ear infection and will start the evil, yet needed antibiotics tonight.

I really hate the over use of antibiotics, on the other hand, I can’t stand to see my girl in pain. It’s a double edged sword…

Jay and I had a long time deciding what to do last night. You see, there are 4 people on my operations team at work. And this is my duty week. I am on call 24/7 this week. I have a 9am meeting every workday and I have to review the spacecraft command load to make sure it is safe for our instrument and that we are completing the science we want. I also need to be available to deal with any changes to the parameters for an observation and to build new commanding if needed.  We have an agreement that I will take any child to the doctor/dentist/ stay home if needed UNLESS it is my duty week. So, Jay should have taken her to the doctor. Except he had a meeting this morning at 10 that he had to be at. Sigh. I was able to do some work at home last night and get things worked out so I was ok to get her into the doctor. It is hard when life and work collide.

We have a busy week. Jay’s mother is visiting on Thursday-Monday. Yes! We have a sitter for a weekend night! :) Nance is very happy! Hopefully the girls will be as excited and let mommy get some stuff done this weekend!

Jay is not doing as well with his new Crohn’s management as we had hoped. The doctor is also not thrilled. The next plan may involve a very nasty drug, given via IV, once a month. I don’t like the sound of it, nor the side effects. I am trying hard not to put my head in the sand on this one, but for the moment, I am hiding from this.
Not even Dr. Google is allowed to talk to me about this until we decide this is to be done.

I was sad to see that ChicagoMom  is still struggling with her depression. It bites. It really does. If you visit her site, go give her a cyber hug, will you? I am starting to get a better handle on it by taking the cymbalta early, but… It comes and goes. This weekend I was with a group of wonderful people and I had a long day with Soleil and I was just apologizing for living by the end of the day. It was terrible. Everyone kept saying they understood, but MAN was it hard….

Finally, a big group cheer for Johnny, who finally got his referral for his son! Congrats Johnny and S and M!!!!

Spring has sprung November 30, 2006

Posted by spacemom in : She Blinded me with Science, Fun with Crohn's Disease, I dream of sleep, Home wreckers , 2 comments

It is a beautiful day. Although it is a workout day, I am still going to sneak some time away from my desk and get a walk in. The sun is shinning and I can’t help but want to be outside. However, a few of the trees here have been tricked by the warm weather and have started to bud. One even has released 3 green leaves! Yikes. Global climate change indeed!

A quick update on Dr. Jay and the crohn’s hell. He has an appointment next Friday for Mass General Hospital. He is finally moving from an IBS (irritable bowl syndrome) specialist to someone who works more closely with crohn’s patients. He is not responding the to drugs as expected, so we hope that there is something the specialist can do at MGH, that his normal specialist can’t. His normal doc has suggested a drug that is IV, once a month. That freaks both of us out.

The cold I have is kicking my ass. I am so tired. Then last night, Luna got up three times. The third time, I took her, my pillow and our stuffed animals to the guest room/office and fell asleep on the futon. Did you know that a 2 year old can take up an entire full sized futon? Amazing, but true! And I had a dream about the Red Sox. You know there is something wrong when I dream about the Red Sox.

My vanity project slowed down due to my cold. I hope to stain it tonight if the girls help (by not driving me insane). Wish me luck.

And finally, I had my annual review yesterday. To my surprise, it took all of 10 minutes and my boss is very happy with me and is still okay with my 4 day schedule. This is my 10th year of working here and so far, this was the easiest review I have ever done.

I have another post brewing in my head…about the bloggers I wish I could meet in person…But not today!

Not good…. July 6, 2006

Posted by spacemom in : Fun with Crohn's Disease , 2 comments

Dr. Jay is having a relapse with the Crohn’s. This is not good. He is more anemic than before and the doctor has told him to stop the 6MP and go up to 20mg of the prednisone. This is really a bad move. I want to see the numbers on the blood work, but we are starting to consider that a Crohn’s specialist may be the best move.

Just when you think it is safe to go back in the water….

A quick goodish news June 15, 2006

Posted by spacemom in : Fun with Crohn's Disease , 2 comments

Blood work from yesterday came back. Dr. Jay has anemia and has been told to go back to a lower dose of the 6MP, the chemo drug. It is not steroid withdrawal that caused the screwy numbers, but a higher dose of the 6MP. Good news is that he is tolerating the lower dose fine. Bad news is that he should be at the higher dose to contain the Crohn’s. Thanks for the good thoughts!

Health Update June 13, 2006

Posted by spacemom in : Fun with Crohn's Disease , 3 comments

I have had a headache for almost two weeks now. Nothing is making it go away, but I haven’t reached for the strongest stuff in my arsenal. I just hate having chronic headaches.

I’ve done research on Dr. Jay’s blood results. I am not happy. Basically, B12, folic acid, CBC (complete blood count), Fe binding and a liver enzyme level are off. The first four can be explained via crohn’s. Dr. Jay has 2 sites of crohn’s along the colon. One of these sites is where B12 is absorbed into the blood stream. The crohn’s can prevent B12 from being absorbed. This leads to lower levels of folic acid, anemia, less red blood cells and a lowered platelet count. The liver enzyme is the one that is scaring the shit out of me. This enzyme is only released into the blood stream when the liver is showing damage. This can happen during the period when cortisteroids are leaving or have left the system. It can also be a side effect of the other drug he is on.

I am seriously hoping this is yet another steroid withdrawal symptom. This really is scary stuff. I never thought about Dr. Jay as being ill, but this is the first time that I have been slapped upside the head with the reality that crohn’s is serious and hurting someone I love.

On a happier note, I will get out two nights this week! And I have someone looking at my car to buy it (sort of). Those stories and more later…