Life has been really challenging lately. I spent this week in the hospital with Jovanna. She was still suffering from dystonia movements and it was getting pretty scary. We checked her into the child psychiatric unit to try to figure out what was going on. I didn't really want to take her there, but the doctors working with us felt like that was best. The doctors who prescribe the medications that cause dystonias are there so they would be best able to help us. When we arrived, they took Jovanna to her room and took me another direction to do paperwork. I didn't bring her there for behavioral reasons, but for a medical condition. She was highly disoriented when we brought her in because they had me give her Ativan (sp?) and she was not thinking clearly. Within 60 seconds of being there, I heard her screaming. They had put her in a seclusion room. Two hours later, when I was finally done with their paperwork, she was still in there. I was so angry. It is such a fine line you walk as a parent. I need to advocate for her but I don't want to make the people who are taking care of her angry.
What was most upsetting to me is that they spent two hours with me doing paperwork, but they didn't spend anytime asking me about what is going on with her, what has been happening, what have I been seeing. So, she is highly medicated on this drug that is making her disorientated and not think clearly and they throw her in a seclusion room for two hours. Part of the dystonia which is tardive dyskinesia will at times make it so her tongue is kind of paralyzed and she can't move it and she can't talk. During the day, she would use her finger and point in her mouth to let me know that she couldn't talk. I would hand her paper and pencil. They were telling me that she was self-inducing vomiting and I just lost it! I said, "No she is not! She has never done that. There is no way that you are going to tell me that she is self-inducing vomiting. That is not something she does." This lady then said, "Well, she was using her finger and putting it in her mouth." and this lady then made the gesture showing me what she was doing. I told them that is what she does when she can't talk. Then I complained that they had spent no time with me learning what has been going on with her.
This was a very difficult experience. It turned out to be a positive experience but the whole first 24 hours were pretty darn difficult. The doctor following her moved her to a room with two beds and they allowed me to stay with her for the rest of the time she was there. That worked out real well. The doctors had to do some research but what we found out is that a medication she is on that was not known to be related to movement disorders, is linked to movement disorders in rare cases. They had to do some research to figure this out. That medication was removed from her regimen and we haven't seen any more movements since. She is on very little medication now, which is wonderful and I really hope that we can move forward without any serious medical scares.
On another note, I signed on my house on Thursday night (they met me at the hospital) and we are expecting to get the keys to the new house on Monday or Tuesday. We are actively packing and loading a truck. Yeah!!!!!
Sunday, June 28, 2009
Sunday, June 21, 2009
Pneumonia!
Well, it came on fast and it settled in my chest even faster. Sometime between Thursday and today, Sunday, I developed pneumonia. I think it was within 24 hours if you asked me because I had walking pneumonia once before in my mid-twenties and I remember what that felt like. This was very similar. They put me on some super strong medicine that is a 5 day mega antibiotic. Hopefully, that is all it will take because I'm supposed to sign on my new house on Tuesday and begin moving Wednesday or Thursday.
I was quite upset with Jovanna's father this weekend. He said he "fell out of a tree" and injured his back. It was his weekend with her and next week is his summer week with her. I tried calling him Friday and he didn't return my call and again on Saturday. So, Sunday, I packed her up and just drove her over. I love her dearly but I am so sick and he hasn't been doing his part lately.
I was quite upset with Jovanna's father this weekend. He said he "fell out of a tree" and injured his back. It was his weekend with her and next week is his summer week with her. I tried calling him Friday and he didn't return my call and again on Saturday. So, Sunday, I packed her up and just drove her over. I love her dearly but I am so sick and he hasn't been doing his part lately.
Saturday, June 20, 2009
Should have known...
With all the crap going on in my life right now, I should have known today would be no different than the last. But first, let me just tell you that I woke up yesterday feeling fine and then on my way to get my morning mocha, I had this urge to cough and to my surprise, I coughed up some yucky stuff. Then, I continued coughing, and continued coughing, and continued coughing and more and more yucky stuff. I couldn't believe that there was no build-up to this. There was no kind of "I'm not feeling so great" forewarning that something was coming up...nope! Just a cough and yucky stuff and I am sick. I have so much congestion in my chest and have coughed so much that it hurts to cough. I woke up in the middle of the night last night struggling to breath, I couldn't get any air in.
Which leads me to today. I woke up this morning feeling like - well, uh, you know. And I am in a bad mood because I feel like crap and I have to go to a training today and I am paying a nanny to watch Jovanna. How much am I paying, you ask? Oh, only $120 dollars! Much more than what I will make today. I had to do a nanny because Jovanna doesn't do so well in childcare settings. One-on-one works best for her but I had no other options. Oh and her dad told me he can't help because he fell out of a tree. Uh ha! That's what he said. He fell out of a tree. What were you doing in a tree, I asked. I was watching the sunrise or some crap like that. He is supposed to have Jovanna for his summer week with her beginning this weekend. Oh, and he missed his spring break week too for some other reason.
So, back to the day. So I feel like crap, I'm paying $120 for childcare today so I can go to a training I don't feel good enough to go to, and I climb into my car. It is raining. I can't remember the last time we had rain - it's been awhile. I turn on my wipers and... My driverside wiper blade goes flying off! It's broke. So, I am already leaving 1/2 hour late and will be arriving to the training late, but now I have to drive in the rain with no wiperblade. Yeah, that made my day.
Which leads me to today. I woke up this morning feeling like - well, uh, you know. And I am in a bad mood because I feel like crap and I have to go to a training today and I am paying a nanny to watch Jovanna. How much am I paying, you ask? Oh, only $120 dollars! Much more than what I will make today. I had to do a nanny because Jovanna doesn't do so well in childcare settings. One-on-one works best for her but I had no other options. Oh and her dad told me he can't help because he fell out of a tree. Uh ha! That's what he said. He fell out of a tree. What were you doing in a tree, I asked. I was watching the sunrise or some crap like that. He is supposed to have Jovanna for his summer week with her beginning this weekend. Oh, and he missed his spring break week too for some other reason.
So, back to the day. So I feel like crap, I'm paying $120 for childcare today so I can go to a training I don't feel good enough to go to, and I climb into my car. It is raining. I can't remember the last time we had rain - it's been awhile. I turn on my wipers and... My driverside wiper blade goes flying off! It's broke. So, I am already leaving 1/2 hour late and will be arriving to the training late, but now I have to drive in the rain with no wiperblade. Yeah, that made my day.
Wednesday, June 17, 2009
Whooaaa Nelly!
I have had a period of time in my life that I hope ends here very soon. You know, I went to church a few months ago and listened to a very good sermon about that saying...you know the one that people say to you and it always, always takes your breath away momentarily because there is something about it that shakes you deep inside. It is what people say to you when you have so many challenges going on in your life all at the same time..."God will never give you more than you can handle". I really truly wish that I could obliterate that statement from the human language.
Going back to the sermon about how God will never give you more than you can handle, well, it was suggested that this is something we say all the time to each other but it really has nothing to do with God. That is a statement that we, humans, came up with. When someone says that to me, I immediately think about how I wished he would stop trying to see just how much I could take. I think I will throw up all over the next person who says that to me.
I have more than I can handle right now (God...are you listening?). My dad had his colostomy reversal surgery and the surgeon forgot he doesn't have any kidneys and overdosed him on narcotic pain killers, he went into cardiac arrest for 4 1/2 minutes and we were lucky he took another breath. He can't seem to get out of the hospital with more and more complications everyday. My boyfriend has been struggling with symptoms that are suggesting he has a muscle disease, possibly muscular dystrophy or ALS. We had quite a scare with him where his liver and kidneys were in distress because of all the muscle breakdown in the body. We are trying to get him into the MDA/ALS Clinic at OHSU and trying to get financial assistance for that because we don't have insurance for him. My daughter seemed to be doing fine with no ongoing symptoms of dystonia/tardive dyskenesia after the scare we had in April/May but she had a dystonic reaction on Saturday, Monday and a really serious one last night that was affecting the breathing and lasted for three hours. Poor thing, her eyes were locked way back and off to the left. There were times where everything went black or her vision was blurry. It is really hard on the eye muscles when they are contracting like that for that long a period of time.
Then, I am currently trying to make progress in packing up my house preparing for our big move, then there is my job, and my business - Scrapdango, and everything else that happens in our lives in between. Oh! How could I forget...I also turned 39 years old amidst all this too! (Thanks again God!!!).
I think I have had all I can handle. God? Are you listening? I am going to take the guess work out of this and just tell you that...enough is enough! This is my limit! This is all I can handle at one time.
Going back to the sermon about how God will never give you more than you can handle, well, it was suggested that this is something we say all the time to each other but it really has nothing to do with God. That is a statement that we, humans, came up with. When someone says that to me, I immediately think about how I wished he would stop trying to see just how much I could take. I think I will throw up all over the next person who says that to me.
I have more than I can handle right now (God...are you listening?). My dad had his colostomy reversal surgery and the surgeon forgot he doesn't have any kidneys and overdosed him on narcotic pain killers, he went into cardiac arrest for 4 1/2 minutes and we were lucky he took another breath. He can't seem to get out of the hospital with more and more complications everyday. My boyfriend has been struggling with symptoms that are suggesting he has a muscle disease, possibly muscular dystrophy or ALS. We had quite a scare with him where his liver and kidneys were in distress because of all the muscle breakdown in the body. We are trying to get him into the MDA/ALS Clinic at OHSU and trying to get financial assistance for that because we don't have insurance for him. My daughter seemed to be doing fine with no ongoing symptoms of dystonia/tardive dyskenesia after the scare we had in April/May but she had a dystonic reaction on Saturday, Monday and a really serious one last night that was affecting the breathing and lasted for three hours. Poor thing, her eyes were locked way back and off to the left. There were times where everything went black or her vision was blurry. It is really hard on the eye muscles when they are contracting like that for that long a period of time.
Then, I am currently trying to make progress in packing up my house preparing for our big move, then there is my job, and my business - Scrapdango, and everything else that happens in our lives in between. Oh! How could I forget...I also turned 39 years old amidst all this too! (Thanks again God!!!).
I think I have had all I can handle. God? Are you listening? I am going to take the guess work out of this and just tell you that...enough is enough! This is my limit! This is all I can handle at one time.
Monday, June 15, 2009
Well, it's another birthday for me!
I can't believe how fast time goes by. I remember my 30th birthday. That was a tough one for me. I was a bit depressed for quite some time about that birthday. I knew how fast life went from 25 to 30 and I was quite sure that when I turned 30, that 40 was not far behind. Well, turns out I was right. I hit 39 today and now I am one day closer to 40. Only 364 days and I will be the big "FOUR O". Mmmhhh...guess I better start preparing for that so when it comes, I will hopefully manage it in stride.
I found myself thinking recently that I should start a journal, or diary of sort. There are so many thoughts that I have...and keep...that I think my children might one day like to read and gain more insight into me and what I think and feel. You never know how much time we have on this earth and if I were to leave this earth, there is so much I would like to say and have people know. Maybe I will start journaling. The only thing that stops me is that I don't always know where to start. Do I start with today or do I jump back in time. I will think about this more and figure out what would work best.
I found myself thinking recently that I should start a journal, or diary of sort. There are so many thoughts that I have...and keep...that I think my children might one day like to read and gain more insight into me and what I think and feel. You never know how much time we have on this earth and if I were to leave this earth, there is so much I would like to say and have people know. Maybe I will start journaling. The only thing that stops me is that I don't always know where to start. Do I start with today or do I jump back in time. I will think about this more and figure out what would work best.
Sunday, June 14, 2009
Training a Little Lady...
My daughter, Jovanna, is now eleven and thinking a lot about boys and asking a lot of questions I haven't been able to figure out how to answer yet. She often grabs my make-up bag and attempts to put on make-up but struggles to know exactly how to do that. So, today I took her to the store and bought her a small basic supply of age appropriate colors and items so she can practice. I showed her the basics of how to select and apply different things like foundation, powder, mascara, eye and lip liner, lipstick and eyeshadow. She paid close attention to the instructions I gave her and I applied make-up to her this time to show her what to do. I expect she will be practicing for herself in the coming days. This should get interesting...
Hope you enjoy a few photos from our make-up crash course today!
Hope you enjoy a few photos from our make-up crash course today!
Monday, June 8, 2009
I put up some signs around my house...
I am getting a bit tired of some of the bad habits in my house so I put up some very clear signs about just a few of the new rules.
The first one says, "RINSE YOUR DISHES BEFORE LEAVING IN THE SINK!!!! (better yet, load the dishwasher rather than put in the sink!!!!)". I taped it on the window directly in front of the sink.
Do you think it will work?
I put a second sign in the kids bathroom that says, "ABSOLUTELY NO CLOTHING OR ANYTHING GETS LEFT ON THE BATHROOM FLOOR!!!! (or sink!!!!)". Between Jovanna and Scotty, sometimes I can't see the bathroom floor. I can't remember a time when either one of them cleaned up the mess either. So, I cleaned the bathroom today and posted my sign.
Do you think it will work?
I put a third sign on the dryer that says, "IT IS ILLEGAL TO PULL CLOTHES OUT OF THE DRYER WHEN THEY ARE STILL WET!!!! (dry first then take out!!!!)". You see, we have this ongoing problem in our house where someone wants to do their laundry and the load in the dryer before them is not quite dry (our stupid dryer takes two drying cycles to be completely dry), so the wet clothes are removed and placed on the couch for...I guess for me to deal with! So, I posted the rule!
Do you think it will work?
I am planning more signs but these are the most bothersome bad habits that have developed in our home. I hope that when we move and we are able to pull out our nice washer and dryer out of storage that we won't have the wet clothes problem anymore.
I figure when we move to our new place, the first thing I will do is unpack my scrapbook products and create some cute signs with the rules so I can post them all over the house!
The first one says, "RINSE YOUR DISHES BEFORE LEAVING IN THE SINK!!!! (better yet, load the dishwasher rather than put in the sink!!!!)". I taped it on the window directly in front of the sink.
Do you think it will work?
I put a second sign in the kids bathroom that says, "ABSOLUTELY NO CLOTHING OR ANYTHING GETS LEFT ON THE BATHROOM FLOOR!!!! (or sink!!!!)". Between Jovanna and Scotty, sometimes I can't see the bathroom floor. I can't remember a time when either one of them cleaned up the mess either. So, I cleaned the bathroom today and posted my sign.
Do you think it will work?
I put a third sign on the dryer that says, "IT IS ILLEGAL TO PULL CLOTHES OUT OF THE DRYER WHEN THEY ARE STILL WET!!!! (dry first then take out!!!!)". You see, we have this ongoing problem in our house where someone wants to do their laundry and the load in the dryer before them is not quite dry (our stupid dryer takes two drying cycles to be completely dry), so the wet clothes are removed and placed on the couch for...I guess for me to deal with! So, I posted the rule!
Do you think it will work?
I am planning more signs but these are the most bothersome bad habits that have developed in our home. I hope that when we move and we are able to pull out our nice washer and dryer out of storage that we won't have the wet clothes problem anymore.
I figure when we move to our new place, the first thing I will do is unpack my scrapbook products and create some cute signs with the rules so I can post them all over the house!
Subscribe to:
Posts (Atom)