Sunday, September 21, 2008

I Just Know This Week Will Be Better

So many times I think about giving this blog up. I forget, life get's busy and when I think of something witty to say, it's usually about the time I am ready to fall asleep. As much as I would like to jump out of bed, fire up the computer and write it all down, I am usually asleep before I can finish the thought!

This past week has been the week from hell. Gillian and I got sick on Friday, and sure enough, by Sunday, I was in the ER. I couldn't keep anything down, including my pain meds. Little did I know that going to the ER, and then subsequently getting admitted would turn out to be a nightmare. It took them 12 tries to get an IV in me. Of course there was no one there to do a PIC line, which is what I was told I would need the last time I was in the hospital. You know what makes me the maddest? I found out on Monday that they did have someone that could put one in, they just didn't. Anyway, I digress. Many of you know that I take some pretty heavy duty pain meds for the debilitating that I experience as a result of back surgery gone wrong. When I vomit them up, I go into withdrawl, which just makes me sicker. It also makes me feel like I am a junky. So, they were giving me pain meds through the IV, but what I take is extended release, and what they were giving me was POP and then come down. Well, I would be OK for the first hour or 2 and then slowly I would start to shake, vomit, get the cold sweats, etc. It was horrible and I was crying and just feeling out of control. While this was happening, I got a male nurse (nothing against them) and he began to ask me, "Do you take your pain meds as prescribed? Do you ever take more than you've been prescribed?, etc" He even went so far as to make me show him my scar on my back (no matter that I had my surgery in the same hospital and he could have just looked up and had access to my medical records. I started to get defensive and he then said, "When you get defensive, then I tend not to believe you". Oh, I was hopping mad. Finally, I asked them to put me back on my meds that I was on (and they wouldn't do this until they called the pain clinic I go to to verify that I was indeed on all these meds). Once they did that, I started to feel better as they were bolusing me the other pain meds too. It took my back pain away for a while and it was such relief.

One thing that I mentioned to this male nurse I had was that I was planning to go on a pain patch instead of taking pills orally. I am also on so many meds for my stomach that this would help this problem. Anyway, the male nurse made a point of coming back to my room, sat down and then started talking about how they only give the patch to terminal and elderly people who are going to die and they don't have to worry about addiction. Well, I am here to tell you that I am going to be on pain meds unless they fix my back because when the pain meds wore off, I was in the most incredible pain. Any fantasy that I harbored about going off the meds and toughing it out went right out the window. I will go for my appt next month at the pain clinic and start the process of weaning off the oral meds and building up the patch. I just think for me, it's a win, win situation. I live in fear of vomiting and when it happens, then I always end up in the hospital. So, that was my weekend and start to my week.

While all this was going on, Gillian was also sick. Her Ulcerative Colitis (UC) kicked into full gear and since she had taken herself off her meds, she was in a really bad place. She was vomiting and going to the bathroom so much that I was worried about her. And although Cheryl was home to take care of her, she would still call me and cry that she wanted me. Talk about feeling like a shithead. Cheryl took her to the MD's office and they started her back on her meds. The same ones. They didn't seem to be worried about her Eosinophilia or anemia that the 6MP caused and I guess from what I hear, the other meds have far worse side effects. They put her on a med that acts as a steroid, but without the side effects. Problem was, it causes an upset stomach and she threw them all up. I finally took her to the ER last night. We got there at 3PM and finally got home at Midnight. They had trauma after trauma and it was so frustrating. They put in an IV, gave her fluids, morphine and Zofran. She is feeling much better today. They also started her on Prednisone which did she ever pitch a fit about. She refused at first so they started her paperwork to admit her and she'd have to be in for 8 days on Prednisone. Now at least she is on it orally and tomorrow when I speak with the gastro MD, we can hopefully begin to taper down. Being in the hospital for 8 days would certainly put a crimp in her style because they are going to start filming for M*DE (the MTV show) this week.

Yes, she was chosen! Another exciting event going on in our house. School has been so hard on this poor kid. The day she started school, she opened her locker and founf that someone had etched the word FAG in her locker. The school is finally taking this bullying and harrassment seriously. I knew something was going on, but not how bad it was. She didn't want to come to me because she knew that I would go to the administration and she was afraid the kids would get into trouble and it would come back on her double fold. What am I supposed to do as a parent? I want to protect my child, but I also want her to learn how to protect herself. She's going to be in college in a year and a half and I am not always going to be there.

Well, this leaves Katie and Cheryl. Katie has adjusted wonderfully to Kindergarten. I love her teacher and it's obvious how much Katie's teacher likes her too. You cna just tell. And Katie really likes her teacher too. It's a great match. I go to school on Thursday and help out in the lunch room. Katie was going to learn to buy millk that day and my MD appt went over and I missed it. I felt horrible. Like the worst parent imaginable. I got to school right after they went back to class. They called her down and her teacher brought her. Katie proudly told me that she helped Mrs. S how to buy HER lunch! And they laughed because they both forgot their straws! What good hands my baby is in!

Cheryl has been taking care of Gillian and I. Poor thing is worn out. It seems that it never gets to be her turn to be taken care of. I guess I need to remidy that situation. If I keep saying "when things calm down, then I will do it" it will never get done, because I seriously doubt that things will ever become calm in this house.

So, Tap, Ballet and Soccer continue. Gillian will be filming for 6 weeks and working and going to school. Cheryl plugs away at her job to bring money home so that we can all survive. And I still wait. Wait for the SSD that is sitting on the judges desk. So much for the bulged disc that he and the SSD MD's said that I had. A surgery later, more incredible pain later and we still wait.....

If anyone out there has any words of wisdom that they think will help move this along faster, I am happy to hear them. I do have an attorney. I guess right now, I just need hope. Hope that one day we won't be in this financial hole we are in (and my shopping to relive stress doesn't help at all). I have become hopelessly addicted to children's clothes, buying fabric to make quilts and then putting them away to make. I will give myself credit that I do make them. I am learning more and more, but even that is difficult to do because of my back.

So, I will ply you all with more pictures of cute kids and the family doing fun things as they come along....let me know you are out there if you are reading me. It's nice to know that I am not talking to myself!



Lo said...

I'm out here. I do hope things get better for you...

Judy said...

Boy! I need to catch up with you more often! You know you're always in my thoughts & prayers, I truly wish I could do more. Sometimes I feel so helpless when this stuff goes on - how good a BF am I? When I win the lottery, you won't have to worry about this stuff anymore! I miss you, and wish I could be there with you.