Gingerbread Friday
Posted by J on Friday, November 26, 2010. Filed under: christmas, craft, gingerbread houses, kidsNo Comments »
I'm so glad that God granted me the ability to knit. I don't know how I would have gotten through the last couple of months with out it. It's a great distraction that actually accomplishes something.
I've finished knitting my mom's xmas sweater. It's been washed and blocked and the ends are woven in. Now I have to decide on the buttons.
As of this writing I have been awake since 7AM Tuesday morning. It is now nearly 5PM on Wednesday.
My two year old has had a cold for the past couple of days, runny nose, normal stuff. Yesterday she started with a dry cough and by 7PM Tuesday night she was in full blown respiratory distress. We were doing nebulizer treatments every four hours through out the night and called the doctor in the morning. We took her in as she was officially diagnosed with asthma. We knew it was coming but it still felt like someone was stabbing me with a knife while I watched the doctor type the word into her chart.
She's on a round of steroids, breathing treatments every three hours, and we follow up in a week. Right now she's sleeping on the couch.
Here she is just two hours before she could not breathe play with my ipod. It's so scary how fast things can go from fine to very very bad. Hug your babies mamas.
November is going by too fast! I'm trying to get through my Christmas knitting which is going slowly compared to how fast (i feel) the month is going. Which doesn't make any sense but it is what it is.
Mom's sweater, one sleeve done and obviously unblocked.
On Saturday I drove the 80 miles to see my pregnant friend. When I got there I told her I had a bad "Crohn's morning" two episodes before I left the house and I had to stop at a rest stop on the way down to her house. Other than that it was okay! I drank a ton of water and made it home okay, except that during the course of driving my hands started feeling tingling. My carpel tunnel has been bothering me a lot the past couple of weeks. I'm sure typing right now is not helping but I am wearing my wrist braces. I'm sort of shocked because I was doing so well with it, right before my major Crohn's flare back in July they were really bothering me and then they just stopped until now. So of course my mind is going there, that I'm going into a flare.
I've read a lot about the "three month set back" and I'm sort of confused by it. Three months since my last flare, three months since starting the meds, or three months since starting the diet? I have three different dates, of course they are all within a week of each other and that week would be now. My flare that landed me in hospital was July 19, Date of Diagnosis was Aug 4, I started Apriso Aug 9, and I started on the diet Aug 14, so there go you. I'm also thinking that me freaking about this time line is probably not helping either.
I think the most frustrating thing is that I just have to sit here and wait to see what happens. I have no control over it, I'm doing everything in my power to stay healthy but I have to realize that it may just not be enough and that's really hard for me to admit to myself.
I am glad though, that I did go ahead with my plans on Saturday despite how I was feeling in the morning. I could have easily just given up and went back to bed and felt sorry for myself the rest of the day. I did take some precautions, I packed extra clothes, baby wipes, and made sure I drove down on the highway in case I needed a rest stop/gas station/any manor of toilet. I had to make provisions for my condition. Luckily, with three kids, I'm used to hauling around extra clothes, food, and making sure there are rest stops available.
I did feel a deep sense of shame packing up my extra clothes though, what if I had an accident? I'm a grown woman for crying out loud. It's always in the back of my mind, a constant reminder that I have this condition and this condition needs my attention. It makes me angry, sad, and annoyed all at the same time.
Visit #1: Primary care doctor. Showed up about five minutes early, they took me back right away and got my weight: 118lbs. Went back into the room where I read every poster on the wall and starred at things while I listened to my doctor chatting up the nurse about Christmas shopping and his son's new job. I waited forty minutes past my appointment time in that tiny little room. At one point I actually thought they forgot about me and debating wandering out into the hall to find someone.
The actual appointment only took ten minutes. He said, "so you were diganosed with an inflamority bowel diease, which one is it?" *cough* I hate when they don't read the charts. The upside was that he renewed my birth control for me since I mentioned that now my insurance doesn't pay for a pap test every year now (just every 3, since I'm old, in a relationship, and have never had a bad pap). So I was happy about that. I don't have to go back for another year. Yay!
Visit #2: GI doctor. Got there approx twenty minutes early because this appointment was about a forty minute drive from my house. I thought I made pretty good time considering I had to drive through the Penn State campus to get there. Those students don't like to follow the "look both ways before you cross the street" rule. They just walk, it's dangerous, and is super stressful to drive through. Apparently there is another way to get to the office, which was explained to me before, but I tried that way once and got terribly lost so I just go the way I know how now. It makes my life a little easier.
Anyway...got checked in and weighed (again) this time it read 116lbs. The actual appointemnt was very quick and positive. She gave me a month's worth of sample medication and told me not to worry about asking for more. She wants to see me again in 6 months, as long as everything goes okay. She did warn me that with Crohn's things go from good to bad very quickly, which scared me, but I need to stay postive about this. Whatever I'm doing is working so I need to keep at it.
My weight, of course, is an issue but not an urgent one as of yet. They obviously do not want me to lose anymore weight but I'm not yet unhealthy for my height (5'4"). I am trying to eat more, I just get full so quickly right now. On the other hand I can say that I haven't lost all that much weight (only 20lbs since July 19th when I was admitted to the hospital). I wasn't heavy to begin with so 20lbs is more noticeable on me.
I have to say I was dreading these appointments. My blood work came back great, my symptoms are well controlled, I was nervous that they (the doctors) were going to try to start taking me off my meds and I'm just not emotionally/mentally ready for that yet. I need to take things slow here. I'm still trying to digest (har har) my diagnosis. I don't want to go and start changing things around now. Besides we're going into the holiday season, I'd like not to be sick or adjusting to new meds.
Two doctor's appointments this coming week: one today, one tomorrow. Today is my primary care doctor, tomorrow is the GI where I will make it a point to tell her that I can not afford 118 dollars a month for my medication, ask for samples, and any sort of assistance card she can point out to me.
I just filled out the forms to get medical assistance via the state. I never want to do that and I felt sick the entire time. Despite having okay health insurance via a major employer in our state, it just isn't enough. I find it humorous, that I've been pretty healthy my entire life, I never had to worry about this stuff because my father worked for a major medical care provider and we had great insurance while I was growing up. Then I got married and we were in the Air Force, now a lot of people complain about TriCare but we never had any issues with it and never had to pay anything out of pocket. Now we're in the "real world" paying a good percentage of my husbands salary every month for health insurance that as of Jan 1 will be covering LESS than what they did previously. The cost of course, is going up. I'm seriously tearing up right now. It's just like a giant hole, ya know? Try to get ahead, save some money, try to do right and then it all just goes away. One thing after another.
First the toilet overflowed in the kids bathroom. Then Middle Girlie spiked a 102.5 degree temp around 2PM. Eldest complained that his throat hurt and decided not to speak most of the day. Ugh.
We had no idea what we were going to do, Middle Girlie was really looking forward to Trick or Treat so we gave her some Motrin and fluids and by 5:30 her temp was normal (and she was doing laps around the yard) and we decided to take her out for a little while so we got the girls dressed and headed to my Aunt's house two towns over (we live in the middle of nowhere). By this time Eldest had been picked up by a friend's mother to go Trick or Treat in their neighborhood. Eldest is in 4th grade, it's not cool anymore to be walking around with your two little sisters.
After a few houses and the Light the Night event at the local chruch Middle Girlie was done and wanted to go home. On the way back into town we got a phone call that Eldest was ready to be picked up. Uh oh. We get there within two minutes and he's not looking so good. His throat again. We get home and check everyone's temps, all normal. Middle Girlie looks over her candy, asks for a glass of water and crashes out on the couch still in her costume. Eldest does the same, Baby Girl eats a bunch of candy and proceeds to run in circles for the next two hours before finally falling asleep around 11PM.
I'm glad everyone was able to go Trick or Treating. I still don't know if it was a good idea since it seems like everyone was feeling bad and truth be told, we weren't going to go at all but my husband made the decision to go and I had five minutes to get ready. I threw on jeans, a sweater, jacket, gloves and a hat (hey we live in the north east!) and I got in the truck. I realized later that I had forgotten my diaper bag (oops) but it turned out we didn't need it (Thank God!).
I didn't even think about it until we were on the way back home that my Crohn's didn't even cross my mind. I wasn't in pain, I was just there in the moment with my kids going off to do something fun. It was amazing to do that and I was so excited when it dawned on me that it had happened. Honestly, it wasn't even hard to avoid sampling the kids candy. Why would I want to eat something that is going to make me sick? I made myself a cup of peppermint tea and watched them enjoy it.
On Sunday we all sort of laid around until mid afternoon, watched a couple of Harry Potter movies. Then I decided to take advantage of Hubby being home and went to run my errands just in case I have a houseful of sick children Monday morning. We have plenty of diapers, food, and toilet paper, you know, important stuff.