The Robin's Nest

The New Year

2006-01-03T21:47:00.000-08:00

I was in a management meeting today and my executive director asked us if we had made any New Year's Resolutions. I thought about it for a while and made a joke about not becoming the one person my doctor sees more than his wife this year. But seriously, I don't think I believe in resolutions. I mean if you want to make these big, major changes in your life, do it. Resolutions are for losers! What are the usuals: lose weight, spend time with family, take time for yourself, blah, blah. Guess what, you don't need a stupid resolution to tell you to do these things. If they were that important to you, you would be doing them anyway. And besides, people expect you to break your resolutions. They don't support you in your big life changes, they sit around and wait for you to screw up!
Okay, enough about resolutions. Here's a medical update. My blood count was low so I am seeing the vampires, oops I mean nurses who take my blood, weekly. My doctor also reduced my chemo so I could build my count back up. I see him in a month and hopefully then everything will be back on track. I don't feel bad, I just notice that I tire more easily.
Now, a Christmas update. I had a great Christmas. This is the first year that Madi really got opening presents. But she still wasn't all that interested. She got lots and lots of presents from everyone. I think it took her a few days to recover from Christmas. It was so exhausing because we were traveling all over Southern Illinois in that one day! Rollie seemed to enjoy Christmas too. For any of you who know my husband, know that holidays aren't his favorite time of year. Combine that with traveling to see all kinds of family, carting around a kid, and carting around presents back and forth...this equates to a grouchy husband! But this year, was pretty good. Well, I am tired so enough for now. Later.

Tis The Season

2005-12-19T22:17:00.000-08:00

Well, we had our first official Christmas get-together tonight. I think Madi had fun. She seems to be a social little girl for the most part. I have a busy week at work. Parties everyday for one program or another! hehe The last time I went to the doctor a couple of weeks ago, he said everything looked great and he stopped my prednisone totally. He told me that I still needed to get my bloodwork done every 2 weeks, but I could skip a month and see him in 2 months. I went today to get my bloodwork done and they calledme back this afternoon. They said my white count has dropped again and that I should cut my chemo pill dosage in half and I now have to come every week to get my bloodwork done until I see him in Feb. I have been feeling pretty good. I think that I am coming to terms with the fact that this is probably something that I am always gonna have to deal with or manage in one way or another. It sucks, but things could definitely be worse.

Frustrations

2005-11-14T21:50:00.000-08:00

Have you ever had one of those days when you wonder why you even bother? Well, today was one for me. Actually, most of the day was pretty good. When I got home from work, it hit. My co-worker called me to tell me that she had heard from another client that one of my very first clients that I ever had, had been killed in a wreck. I know that when working with substance abusers, you can expect frustrations...lots of them. This is nothing new to me. But, this is a kid that I had really gotten to know well and had gotten to know probably better than anyone else in his life had even known him. He had grown up in an abusive household where he and his mother had frequent physical altercations over their drugs. His mother died in a car wreck while driving intoxicated while in counseling with me. I worked with him through this, helped him through rehab, and helped him once out of rehab. I really felt like he got it! I ended up closing him from treatment successfully. That was 3 years ago. Somewhere along the way, he got back into using, went to prison, and ended up back with us in counseling. This time he was in the adult program. He was not the same person, not even close. I don't know what happened, but something did. He would never show up and his parole officer would do nothing about it. Eventually, we closed him out of services due to noncompliance. Now, he's dead. So I ask myself, why? Why do I bother sometimes? Why don't people get it? Why do people lose it even after they seem to get it? I love what I do for a living, but sometimes, it really makes me question myself when these things happen.

I Hate Cold Weather

2005-10-25T21:56:00.000-07:00

I feel so old and decrepid. I don't know if its my illness or the fact that I am gonna be hitting the big 30 next year, but I am SO achy and sore in this cold weather. It is like my joints and muscles just freeze and hurt to move. Everyone around these parts is doing pretty good. Madi is cute as ever, we just got her 15 mos. pics back with her pig tails in. She is a doll (not that I am biased)! Rollie is staying pretty busy with work and I even got him out to a dinner on Saturday night with my parents and no Madi. It was nice. We actually stayed out past our bedtime and had fun! hehe

I passed a dreaded kidney stone yesterday. I haven't had one of those darn things since before I was pregnant with Madi. I just kinda figured that the pregnancy had fixed whatever was wrong with that and helped bring my other illness out. But it doesn't seem to be the case. When I went to deliver Madi and had the complications, they elected to do a c-section. They found then that my placenta has calcified. I am guessing this is why the stones has stopped during the pregnancy. But still I haven't had one until now at least. Those things are painful. Before, when I was getting them, I was having them at least every 2 months. I hope to goodness it doesn't get like that again. Idon[t know if my body has an over-abundance of calcium or what. The thing is I also take calcium supplements daily because the medications that I am on can apparently deplete my supply. In fact, this is why they have me do bone density scans.

Enough about my medical crap, it seems there is always something going on! Nothing too serious, just enough to keep us on our toes! Later!

Hello Hello

2005-10-06T21:16:00.000-07:00

Just popping in once again to let everyone know that I am doing well. Madi is doing excellent and Rollie is hanging in there too! The doctor started me back up on a portion of my chemo drugs because my white blood cell count is back up and running. We are starting to get some cooler weather around here and it is really making me feel like an old lady. My bones creak and my muscles ache. I do not look forward to the winter! Later

Slowly, One By One

2005-09-22T21:45:00.000-07:00

It's have been a ling time again! I actually have some updates. Healthwise: a couple of weeks ago my white blood count dropped really low so my doctor took me off all of my chemo. I am off of it until I see him again in a few weeks. Also, Madi had her first "sick visit" to the doctor. She was put on antibiotics and she is doing great now. That stuff really kicked in quick! I took a trip to St.Louis for 3 nights for the National Conference on Criminal Behavior and Addiction. It was great, but I HATED being away from my husband and daughter. Nothing else really new! Please keep me in your thoughts, I have noticed the last few months, my hair is starting to really thin out. I don't know if it's the chemo or what. I know it is really superficial and stupid, but I was so happy when my hair wasn't falling out from the chemo. After everything I've dealt with I think my hair falling out would be the hardest for me to deal with. I don't want to deal with the other people. Right now, people can look at me and think there is nothing wrong, if my hair is gone, I will go back to getting those sympathy looks and comments. I don't want that! Later.

Life Is Passing Us By

2005-08-30T21:38:00.000-07:00

Sometimes you just get so busy it seems that life just passes us on by. I haven't posted in a long time it seems. I haven't really been doing anything different...just the usual like family and work and family and work. I did find out yesterday that I will be away for 3 nights in September for a conference in St.Louis. I am excited, but I will miss my husband and daughter so much! Health wise everything is still just chugging forward I guess. The doc is still backing me off the steriods but he hasn't lower my chemo pill dosage yet. Hopefully, that will come soon. Well, not much else to catch up on...later.

Professional Pain In The Behind

2005-07-30T21:35:00.000-07:00

My husband and I have been talking about a person that we both know who is never wrong. No matter what happens, no matter is what this person says ends up blowing up in their face, they cannot seem to admit that they were wrong. They claim that someone else must have messed things up somehow. This happens to be a person that have respect for and it frustrates me immensely for this person to be like that. For some reason they automatically assume that anyone and everyone what to hear their opinion because their opinion is obviously valued and important because it is always right! I just don't get it. This could be a really likeable individual that has a lot to offer others. But instead, they have become a person that many avoid just because they cannot keep their mouth shut and their mind open. Why do people have to be this way?

Symptoms?

2005-07-18T20:38:00.000-07:00

It has been a while since I last posted. Not really a whole lot new going on. I have been busy as usual. The doctor is still cuttingme back on the prednisone. I can tell somewhat now. My hands and feet and my elbows are beginning to hurt andache again. I am having trouble sometimes with jar lids and such. I know this is small potatoes compared to the way that I was, it is just scary to have those symptoms return. I told my doctor about them Friday. He didn't seem too worried. in fact, he said that he expected it to happen with the reduction on prednisone. He instructed me to take Tylenol to see if that helped, if it didn't he would prescribe me a medication like Bextra. I can live with the pain right now, but if it gets much worse, I will have to look into taking something. Well, enough for now, my hands are getting sore. later.

Let's Celebrate

2005-07-03T23:36:00.000-07:00

Well, it is almost the 4th of July. Don't have really big plans, just going to my parents for dinner. MAYBE going to watch the "big" fireworks display at the park. I say maybe because I haven't decided for certain whether or not I am going for certain. I am thinking that Madi may be scared of the fireworks because of the noise. Also, it will depend on whether or not I dealing with a crisis call for work because unfortunately, I am on call. We are all doing great around here. Nothing new to report on. Well, time for bed for me...catch you later!

Pics Finally!

2005-06-25T22:29:00.000-07:00

Well, I finally have pictures to share. You can go to rolliehawk.com/blog and my husband has them posted there on his blog. Not a lot else going on that is out of the norm. Just staying busy, being crazy at work, and spending time with Madi. The doc is still tapering me off my meds and I am still feeling pretty good. I hope it stays this way. Well, enough for now. Later.

Happy Birthday Madi!

2005-06-14T20:39:00.000-07:00

One year ago today, I gave birth to a beautiful little girl. It doesn't seem like it has been a whole year. I am so glad to have her. She is truly incredible. Parenthood is like nothing else in the world. Well I go to the lung doctor tomorrow and have to breathing tests again. I am breathing much better, I am thinking he will discontinue the oxygen. I haven't been using it anyway. I don't feel like I need it. I am also having family over tomorrow for Rollie's birthday. He turns the big 27. Well, enough for now, I'm getting ready for bed. Later.

Celebrations!!!

2005-06-09T21:14:00.000-07:00

Yes, I know, it's been awhile again. Here's the update. I went to the doctor about 2 weeks ago and he is stepping me down on my prednisone. I am now down to taking it every other day. The process has absolutely kicked me in the butt! I can now say that I know what withdrawals feels like. My body had certainly adjusted to the medication and it did not like the doctor taking away my steriods. I am not as achy now. I can still tell that I am not back to "normal", but I am better than when he initiated the step down. My 5 year wedding anniversary is tomorrow. But he and I went out to eat on Wednesday to celebrate. We had a nice meal and then spent some time at the mall. It was a nice evening. Next week, Madi's turn 1 on Tuesday and Rollie's birthday is on Wednesday. We are also getting family pics made this weekend. So we have a busy few weeks ahead of us. Well, enough for now, I am tired. Later.

Rest In Peace

2005-05-26T21:47:00.000-07:00

I am tired. I am still sick and I do not feel well. I have decided that I have to make myself rest and slow down in order to feel better. This is extremely hard for me. I am a very on the go kind of person and actually sitting down and relaxing is difficult for me. But, I really think that is what my body needs right now. I am taking off of work tomorrow and I have a holiday on Monday so, I have a 4 day weekend to relax and recooperate. I surely hope that does the trick. I hate feeling like this. I am all congested and I can't hear well or smell anything or taste anything. It just really sucks. I have told Rollie that I need to rest. I did this not because he has doing things, but because he will stay on me and make me rest. I just hope my little girl will let mommy rest too. Well, enough for now...later.

Under The Weather

2005-05-22T21:41:00.000-07:00

I feel crappy. I have not felt well the past couple of days. I am congested and my throat hurts. My head hurts too. I know, it is probably just the ellusive "sinus" stuff. At any rate, I feel bad whatever it is. But, I go to the doctor tomorrow. Rollie says as congested as I sound, I shouldn't be surprised if the doctor wants to put me in the hospital for pneumonia. You see, with this illness that I have there is a certain type of pneumonia that I am more succeptible to get because of the illness and combo of meds that I am on. The problem is that the one medication that fights that specific type of pneumonia, is the one that I am allergic to. I say, bull crap! I am not gonna go into the hospital and there must be another medicine out there to fight that strand of pneumonia. Anyhow, I am probably getting my panties in a bunch for nothing, but I don't like the thought of being away from my family like that. I put my litttle girl to bed every night...we have our ritual. And Rollie shouldn't have to have everything dropped on him. Will they make it? Yes, I know they will, but the point is they don't have to and I want to be home with them. Some people call me stubborn, I say I am just a very determined lady! later

2005-05-17T21:18:00.000-07:00

Staying pretty busy between work and home. I am still on crisis call. It hasn't been too bad so far. I have definitely had worse on-call experiences. Madi seems to be feeling a bit better today. She wsa feeling pretty cruddy. She had runny nose, cough, fever, junk like that. But, I think it was her cutting teeth. She really acted like hermouth was sensitive and she wouldn't eat much either. I don't know, maybye it was a cold. It is so hard to tell when they can't talk to you to tell you! Rollie is in doing is radio show over the net right now. He really impresses me. He is able to stay so focused on his goals. He is a very motivated individual and I respect that about him. Often times, many of us, are quck to jump on something quickly when it looks good.l Rollie really analizes the situation and looks at what is best for us in the long run rather than the here and now. I am not sure what made me thnk of that right now, but I certainly felt that it needs recognized! Well, enough bragging on my hunny for now, later!

Gotta Get My Sleep

2005-05-14T22:07:00.000-07:00

Nothing really new to report on. I've been feeling great and doing well. Have been busy with a few crisis calls, but nothing has kept me up late yet. (Knock on wood.) That is when it is bad. Some people in life can function very well on little amounts of sleep. I am not one of those people. I acutally feel as though I am physically ill when I have to function at something the next day after not getting much sleep. It kinda ticks me off, I can usually tough anyhting out, but me not sleeping is something I just cannot do. Oh well. Rollie seems to do much better than I do with not getting much sleep. Well, I am gonna wrap it up for tonight, later!

Shake, Shake, Shake

2005-05-12T20:38:00.000-07:00

My daughter is becoming really entertaining. You see, she now is singing "Shake, Shake, Shake" as she dances and shakes her arms. She's really gonna be a little attention seeker! I go on call tomorrow...YUCK! Seems likeI was just on call last week. I think it was just 2 weeks ago though. I'm not sure how this worked out, but I do not like it. At least I'm not on again until sometime in July. I have been feeling really good as of late. In fact, I have stopped using my oxygen tank while doing my physical therapy and I really cannot tell a difference. I didn;t sleep with the oxygen last night either and didn't notice anythign different this morning. I am thinking the lung doctor will probably take me off the O2 at my next appointment with him in June. Well, enough for now...Later.

Recovering...Maybe

2005-05-08T21:34:00.000-07:00

Well, we survived the big yard sale. It was hectic to say the least and I am still tired out from it. Also today was my first official Mother's Day. I started off my day with huband waking me at 5:30 telling me he was leaving to go work. At 6:00 I was up with my daughter who usually wants to sleep in. She was an absolute handful today. Actually she has been all weekend. I don't know if it was just being thrown off her schedule or too much maw maw and paw paw, but she has been especially needy and wanting to be held. I then went to my mothers after doing laundry and cleaning the kitchen and putting away the left over yard sale crap. At my mom's I cooked dinner for mom and dad, my brother and his wife and his mother-in-law, and my family. We had BBQ chicken, mashed potatoes, green beans, corn on the cob, bread, and pasta salad. I got the kitchen cleaned up afterward and headed up to spend time with Rollie's family. There was sat around and talked for a little bit and then his mom and Madi and I went shopping. I finally madeit back home at around 8 pm. So, in conclusion, I realize that Mother's Day is for moms to relax and kick back, but I didn't really do that. No one made me do all the things that I did, but I kinda wish I would have just relaxed and kicked back for a bit. But that's not my style I guess. Well, I'm tired and I have to be at the dentist at 8 am...YUCK! I hate going to the dentist. Later

Busy Week

2005-05-05T21:34:00.000-07:00

I have stayed pretty busy this week. We have the big yard sale at mom and dads tomorrow and Saturday, then Mother's Day on Sunday, so it looks like a very busy weekend ahead. I have been feeling great and staying on the go. It seems I feel better the busier I stay. It's like I don't have time to think about feeling bad so something. Yes, I end up exhausted, but I at least feel like I am accomplishing things again. Well, off to bed for now...later.

Did Ya Miss Me?

2005-04-30T22:30:00.000-07:00

I know, I know...it's been a while since I last posted. I was doing so well. Posting everyday, keeping everyone updated, all that good stuff. Then I started to slack. Now it has been a week! Well, I will try to do better. That is all I can say. There really isn't a lot to update on. I am still feeling great, staying busy at work, have a wonderful husband and a gorgeous daughter! I went to the doctor last Monday and he reduced the prednisone level that I am on and is slowly working me off of it, thank goodness. I am ready to be off of that stuff! Well, I am gonna hit the sack now. I again will promise to try to do better about posting. Later!

Life

2005-04-20T22:20:00.000-07:00

I have decided that life just never slows down. People always say when things slow down a bit I'll do this or that. Well, that will NEVER happen. If there are things in life that you want to do you cannot wait around...get out there and do them. I am not sure what has really got me to thinking about this. Maybe I am just tired of hearing people talk about how they don't have time to do things they supposedly really want to be doing...bullcrap. If you really want to do something you'll make the time. Well, enough griping for now, later.

I HATE HARD SHELL BUGS

2005-04-17T20:59:00.000-07:00

You know those bugs that fly around in the summer and buzz past you and get caught on your hair...I think people call them June bugs. Anyhow...I absolutely hate those things. Right now, I am sitting in my chair with the window open and one is buzzing around taunting me as I type this. Anyhow, not a lot to report. I got a lot done around the house today despite being up till 3:30 this am on a crisis call. Hopefully, all will be peaceful tonight. I am leaving the house at 6 am tomorrow for a 4 hour meeting in Springfield. I'll spend more time driving than at the meeting. Crazy, huh? Gonna go soak in the tub now...later.

Pooped Out

2005-04-16T21:18:00.000-07:00

I have been going nonstop since 630 this morning! Madi has been a very busy little girl. She is truly into everything now. I am ready for a long soak in my bathtub and then laying in my bed reading my magazine. So...I'll go for now...later.

It's Been A While

2005-04-15T23:05:00.000-07:00

Sorry it has been a while since I last posted. I just didn't have anything new or different to post! Madi turned 10 months old yesterday. She is doing great. She was sick for the very first time. She had a cold, fever, etc., and I had to give her medicine fot the first time. She slept a lot and was better by evening though. I am on crisis call for a week beginning today. YUCK. It was crazy earlier today. I had 3 crisis' going on at once! But all is well now. Hopefully it will stay that way. I have been feeling okay. I have had a lot of trouble breathing with the weather changes. I am very congested in my chest and an trying to get better. But I have felt pretty darn good, I just sound a lot worse than I feel. Well, enough for now...later.

Tired

2005-04-10T21:29:00.000-07:00

This has really been a tiring weekend for me. I am almost ready to get back to work to get some rest! Well, sort of. Anyway, I have just kept myself on the go and busy most of the weekend and I am feeling it. I am just so tired. Rollie is feeling a bit better thank goodness. It is hard when a loved one is sick and there's nothing you can do to make them feel better. My baby girl is gonna be an outdoorsy type. She absolutely loves being outside...just cannot get enough. Well, I am gonna try to hit the sack soon. Later.

Worn Out

2005-04-09T20:40:00.000-07:00

Today was a full day. I left the house with Madi at 6:45 this morning and got back home around 6 pm. We were on the go all day. Rollie was home sick. He isn't feeling too good. He thinks he just has a good old fashioned cold. He's running a fever with it and is afraid of making me sick. Having a cold sucks...there's just no two ways about it. I hope he gets to feeling better soon. Well, I'm heading off to sleep soon...today wore me out! Later

Going To Bed Early Tonight

2005-04-07T19:56:00.000-07:00

I am hoping to go to bed early tonight. For some reason, I could not fall asleep last night. It took me so long to wind down. I am ready to crash tonight. Madi & Rollie are doing okay. Rollie says he's finally starting to feel a little better. Madi still seems to be feeling kinda under the weather. I still think it is her cutting teeth though. Well, enough for now. Later.

Blink

2005-04-06T22:57:00.000-07:00

Seems like I woke up this morning, blinked my eyes and here it is 11 at night. It has always has been busy from the get go. I am so tired that this will be a very short post. Nothing much to update on. I am feeling pretty good and good well at staying busy. I am so thankful that I am able and feel good. Madi and Rollie are both doing okay too. Rollie has been a bit under the weather, but nothing too serious and Madi is cutting a tooth, so she's not been her usual 110%. But all in all the household is holding steady. Later.

Time Changes

2005-04-05T20:08:00.000-07:00

Time changes really stink. I am still adjusting. I just feel out of wack. I have to get some sleep tonight! I've went 2 nights now not sleeping well. Madi is still cutting her first tooth. You can really see it poking through (when she lets you), but it still has a way to go. Well, not a lot else to report on. Later.

Work

2005-04-04T20:26:00.000-07:00

It was nice to be back at work to try to get caught up on things, but gosh did I ever stay busy! It was one of those crazy days. My day started off with meetings and ended with the police. No one was hurt, don't worry, nothing like that. Feeling okay today, have felt better, but have also certainly felt worse. Nothing to complain about. Well, enough for now. Later.

Pollen

2005-04-03T21:21:00.000-07:00

I am ready for the pollen to die down! I am so congested. Madi and I went shopping today. We had a good time. She liked looking at the plants (we were at Lowe's). Well, not a lot to update an or talk about right now. I'm going to bed. Later.

Good Day

2005-04-02T19:55:00.000-08:00

Today was a pretty good day. Madi and I had our little shopping excursion this morning and then went to the baby shower. She did really well and loved the attention she got from everyone! I have been feeling pretty good except for the allergies. It is hard for me to breathe in this weather with all the pollen and stuff in the air. I guess I just have deal with it. Well, enough for now. Later.

Completion

2005-04-01T20:37:00.000-08:00

I have officially completed my first grant all by myself. Thank Goodness! I felt so relieved after I dropped that off with Fed Ex. Now, I have the weekend to relax and enjoy myself before going back to work to catch up on everything that I've neglected while working on this grant. Enough about work, I have a busy day tomorrow planned with my daughter. We have a small shopping trip planned in the morning and a baby shower in the afternoon to attend. So, it should be fun. Well, I am gonna try to get a few things done before going to bed. Later.

Grant Almost Accomplished

2005-03-31T21:15:00.000-08:00

I almost have my grant completely done. Just a few minor changes and 2 signatures to get. It was beautiful today after it was so stormy last night. I spent quite a bit of time driving around today locating people to sign off on the grant, so I got to be out in the beautiful weather. I cannot get over how much my daughter changes daily. She just seems to learn so many new things every single day. Time is truly fyling by. Well, enough for now. Later.

Quick Post

2005-03-30T21:31:00.000-08:00

This is a quick one because it is storny out and I don't wanna be on here long! Today has been okay...a lot of pollen was in the air today and it was a lot harder for me to breathe. I didn't realize how much that affected by breathing until today. Hopefully this rain will kick the pollen back down. Well, enough for now, Later.

Great Weather

2005-03-29T21:32:00.000-08:00

It really sucked being stuck inside today. It was so beautiful outside! You see I am writing my very first grant all by myself and it is due at the beginning of next week. So, my computer at work and I are becoming very close and I am holed up in an office without a window that will open! I don't even get a breath of fresh air in the place. Enough bellyaching, when I got home, Madi, Rollie, and I spent some time outside in the yard with the dogs. That was really nice. Also today, I felt Madi's first tooth poking through finally. That was exciting. The little turkey won't open her mouth to let me see it, but I definitely felt it. Well, timef or bed. Later.

Back In the Swing of Things

2005-03-28T21:28:00.000-08:00

Went to the doctor today. Nothing really new. He said that I am progressing as good as he could have hoped, which I already knew. Also, he is gonna look at cutting back my meds possible in another month or two. They are still gonna suck my blood every 2 weeks and I will see him again in a month. He didn't have a lot more info on the liver problem. He said basically the only way to improve with it is to lose more weight, but he also said that it would be extremely difficult for me to do so on such a high dosage of prednisone. So, really there isn't a lot to do about the liver right now. After the doctor, I went on to work and had one meeting after another and then made it home late due to a board meeting. At least I got to play with Madi before she went to bed. Well, speaking of bed, I am gonna hit the sack now. Later.

Happy Easter

2005-03-27T19:48:00.000-08:00

We had a nice family get together today and I got a lot of work done at the house so all in all it was a good Easter Sunday. Also, I feel tons better than I did last night...funny how that medicine works! I go see Dr. Taylor tomorrow for my 2 week checkup and blood work. I have a few questions to ask him about the liver biopsy results. Well, not muchelse to report. Hope everyone had a great Easter Sunday. Later.

Non-Stop

2005-03-26T21:25:00.000-08:00

The day started with breakfast at Bob Evans and then a trip to Toys R Us. Next, I went to mom's with Madi to help her getting ready for the yard sale. We then went back to the house to pick up Rollie and headed to his parents. There, we visited for about an hour and then headed to Red Lobster for our Easter supper together. After supper, we went back to my parents house to visit. Finally, I got home. I realized that I forgot to take my medications today at about 6 pm. I usually take them at 6:30 a.m. I couldn't figure out why I just wasn't feeling right. Well, seems stopping a steriod altogether isn't a good thing. I went ahead and took 1 of the 3 steriod pills otherwise I was afraid I'd be up all night. Hopefully, tomorrow I will get back on schedule with the pills. Right now, it hurts to touch me. It's like my muscles are bruised. Well, I am gonna try to go to sleep. Later.

Pretty Day

2005-03-25T22:13:00.000-08:00

Today was a very pretty day outside. I think it is supposed to begin raining again tonight though. Tomorrow, we have a fairly busy day planned. We are gonna go out to eat breatkfast and then in the afternoon, we are gonna go to Rollie's family's house for a visit and then go out to eat supper with them to celebrate Easter. So we'll have a big part of the day out and about visiting. I forgot to ask Rollie to help me with the pic of Madi, so hopefully when he reads this he will remind me! hehe Well, enough for now, later.

Ahhhh, The End of the Week

2005-03-24T22:07:00.000-08:00

I am ready to crash! I have a lot of things that I want to get done this weekend, but I will do them on my time and on my schedule. I am gonna try to post the Easter Bunny pic with Madi sometime soon. I will have to enlist the help of my wonderful husband though. Well, I am going to bed, I've already fallen asleep on the couch twice this evening. Later.

Ready For The Long Weekend

2005-03-23T22:06:00.000-08:00

Well, tomorrow is the last work day for the week and this is a good thing. I am ready to relax a bit or at least not feel rushed, behind or hurried in any way. We do have plans with both sides of the family this weekend but again, I will not be rushed, behind or hurried in any way. Today was pretty much the same as every other day this week. I was going non stop from the time I got up at 6 am until I layed down right now at 10 pm. I gripe about this I know, but I am thankful that I am able to be up and going non stop like that again. I just don't want to get myself run down and sick again. Well, I am gonna head off tgo bed for the night. Later.

Rainy Day

2005-03-22T21:35:00.000-08:00

It has been a dreary, rainy day. I have always liked rainy days though. I just love to listen to the rain and thunder. Lightning is just fascinating to me. Maybe that is strange, maybe not. It is soothing. Anyhow, I needed this day to be soothing, because is was so hectic in evey othe aspect. I know I talk about this a lot, but just when I think it cannot get any busier or crazier... it does. I am gonna have to just take control back as much as I can in the setting that I work in and tell people no more often than I already do and set limits. That is the key! I got word back on the liver biopsy today. I have non-alcoholic steatohepatitis (NASH). There are no treatments that I have to take for it. Basically, I just have an enlarged, fatty liver. They don't know why, I just do. They said that I should lose 20 pounds and that may help. I told then I have already lost 80, but they said I need to lose 20 more. Rollie says since I lost the 80 so quickly, maybe my liver just hasn't caught up with the rest of me. I say that sounds good, I don't think I want to lose another 20. They said they would go back and check up on it again in a year. I see my main doctor on Monday so maybe he'll have some more information fo me then. Well, I am tired and ready for sleep. Later

Not A Lot of Time

2005-03-21T22:24:00.000-08:00

It hs been a busy one. I am getting ready to go take my bath now, I have been going non-stop all day! The good this is that I'm feeling great and am able to go like this right now. Well, not much else to say other than I have to get ready for bed or I'll regret it tomorrow. Later.

Shopping

2005-03-20T21:37:00.000-08:00

I spent most of my day shopping. It has been quite a while since I have been able to say that. i just wasn't able to keep up like I used to. But, today, I was almost back to my old shopping self! For the first time in a long time, Mom tired out before me! Madi went with us too. She really seemed to enjoy herself. She is like a sponge and just soaks in everything! She even got her picture taken with the Easter Bunny. It was really nice out again today too. The sun was out all day and it was just beautiful outside. I think it is supposed to start raining tomorrow though. Well, off to bed now. Later.

Good Show

2005-03-19T19:43:00.000-08:00

Well, we had the business show today. It went pretty good. There were quite a few different businesses set up and seemed to have a decent turn out. I have still been feeling good. It seems like I have more and more energy every day and just feel a little better every day. Certainly, I have no complaints...except, I want to hear back about my liver biopsy! I will begin with my harrassment of the doctor on Monday until I can get some kind of answer. Well, I want to go soak in a hot, hot bath tub and just relax. Later.

Friday & Family

2005-03-18T22:26:00.000-08:00

So glad it's Friday. It has been a pretty hectic week. The show tomorrow has made it a bit busier than normal, but I am glad it is here. I went on call again today. So for another week, I have the duty. Hohpefully it is quiet. Today we also went to my parents house for a birthday party for my grandma. It was nice getting everyone together again. We hadn't all been together since Christmas I guess. Madi was in a pretty good mood for the crowd. She stayed pretty active and just soaked everyone and everything in. Well, I guess I better get some sleep for the show tomorrow. Later.

Crazy

2005-03-17T22:07:00.000-08:00

I feel l ike I have done nothing but run around today. I have been rush, rush, rush everywhere from one meeting or appointment to the next. Then after I got home, I was able to relax a bit with Madi and play some. I got her to sleep around 7 then around 730 I went out on a crisis call for work. It has just been a crazy day. Still have heard anything on the liver biopsy. It was a week ago today. I am getting a bit anxious to hear something. Well, I am gonna try to wind down now and get some sleep. It is hard to do that after being out on a crisis...the rush I guess gets to you. Later.

Nothing Unusual

2005-03-16T21:24:00.000-08:00

Today has been a pretty good day. I stayed very busy at work which made the day fly by. I suppose that is a good thing. I also went straight to my mothers after work to work on candle stuff for the show this weekend so I didnn't make it home until around 8 pm. My little girl was still up and very happy to see mommy so we played for a bit. It feels good when someone gets so excited just to see you! Then I put her to bed. So that has been my day. Now its time to put me to bed!

Good News

2005-03-15T22:02:00.000-08:00

Went to the lung doctor today and my lungs are now working at 50%. That is a 10% increase from about a month and a half ago. I could tell they were getting better! The breathing tests were still very hard, but not as bad as last time. I go back and see him in 3 months. Also, thank goodness he took me off of that inhaler. It was burning the crap out of my mouth. Italian salad dressing was setting my mouth on fire! Not a lot else to report, I am still waiting not so patiently to hear something from someone on my liver biopsy. The family is doing great. Madi is perfect...hehe, not that I am biased and Rollie is a God send, I couldn't make it without his support. I am gonna head to bed for now, later.

Back To Work

2005-03-14T21:50:00.000-08:00

I hadn't been back to the office to work since last Tuesday am before I left for Springfield. So, I walked into work today to find a desk piled up with junk and a mail box with stuff hanging out of it because it was so full. I stayed late and worked unil 7 tonight and I still never made it through my mail in between dealing with the usual "crisis" that come up. But, I guess that is the nature of the business. Anyhow, I will only be at work for a couple of hours tomorrow because I go the the lung doctor and get blood work done and the dreaded breahing tests. But I should be there the rest of the week and hopefully I am ableto get caught up...hehe yeah right! Well, enough for now, more later.

Allergic

2005-03-13T21:11:00.000-08:00

I have never in my life been allergic to any type of medications. I now know that I am allergic to the antibiotic Bactrim. I began taking it again per doctors orders and sure enough, I got the flu like symptoms back again just like clockwork. At least now I know not to take that stuff anymore. I guess I never really realized that an allergic reaction can so closely resemble the flu. I usually think of hives, sneezing, itching, burning, you know...allergies. This was nothing like that! Anyhow, I am beginning to feel better now and have a busy week ahead of me. Lots to do at work and lots to do getting ready for the candle show. I also have the lung doctor to see Tuesday along with the dreaded breathing tests and bloodwork. Then on Thursday, I go see the eye doctor for my yearly checkup, because you know, I just cannot seem to stay away from the doctors offices! Well, heading to bed for the night, later.

Hard At It

2005-03-12T20:50:00.000-08:00

I spent a lot of time today making candles and getting ready for the show next week. I still have some work to do, but the biggest part is out of the way now. Madi is really becoming a handful. She is pulling herself up everywhere and getting into everything! It is fun to watch the looks on her face when she sees something new. She is so Inquisitive. I have felt pretty good again today. It was so beautiful outside. After I got home from working on the candles, Madi and I strolled around the yard, enjoying the weather.

Pretty Good Day

2005-03-11T20:20:00.000-08:00

I stayed fairly busy today. I took Madi to the doctor with Rollie this morning. She's 18 lbs and 4 oz now and 28 inches long. I then made a trip to work to pick up my paycheck. The rest of the day I just spent around the house with my family. I haven't been sore or anything. I can feel where they went in for the biopsy, but I'm not in pain. It did hurt however, the two times when Madi kicked me perfectly onj the spot while diaper changing and wiggling all over me when I was holding her. Well, tomorrow is gonna be a busy day. I have to get ready for my candle show next weekend and mom and I have some serious candle making to do, so I am gonna get some sleep soon. Later.

Worried Over Nothing

2005-03-10T20:23:00.000-08:00

The liver biopsy today and it was NOTHING! The IV was worse than the biopsy. I didn'd even know he had done it, I thought he was giving me the shot to numb me still. I feel great and am in absolutely no pain. They said no lifting more than 10 lbs today, take it easy, no work tomorrow and no Tylenol type products today. I am getting pretty tired right now, I don't know if it's from the procedure or just that I have been so uptight about this coming that I finally relaxing. Anyhow, I should know something in a week or two. Not a whole lot else to report, the family is doing good and we are all staying very busy. Madi is on the going constantly now. She just follows you everywhere you go. Well, I am gonna hit the sack and go to bed early. Later.

Back In Town

2005-03-09T21:56:00.000-08:00

I am so glad to be back from Springfield. Gosh, I missed my family though. It was so strange being away from my husband and daughter. I didn't like being away. But, it was a good training and I feel like I actually got something out of it. Well, the liver biopsy is tomorrow at 9 am. I am very nervous and anxious. The liver doctor just hasn't told me a lot about it. I know it is outpatient and the actual procedure doesn't take very long, but I don't know how long they keep me to monitor me or anything like that. I have been told a few different things, so I guess I'll just see. Well, I am tired and gonna hit the sack. If I don't post tomorrow you knowit's because I feel like crap from the biopsy. Otherwise more to come then!

Away From Home

2005-03-07T21:06:00.000-08:00

Well, tomorrow, I will be away from home. I have a training to attend in Springfield. Gosh, I am gonna miss my family! I know they will get along just fine, but I sure will miss them. I have most everything packed, all but the last minute stuff you can't pack until morning. I have been feeling great too. I went to physical therapy again today and I am slowing increasing my times on the tread mill and bike. I still feel like I am going so slow compared to the shape that I used to be in, but I just get so out of breath! Well, time to rest. I probably won't post tomorrow since I'll be outta town, I doubt I bring my laptop with me. Later!

Feeling Good

2005-03-06T21:06:00.000-08:00

I have officially felt pretty good for a full weekend! I feel like I got a lot done today too. It was so pretty outside that Madi and I had to spend a little quality time together sitting and watching the traffic go by. Well, I have a busy week ahead of me. I am already beginnnig to feel anxious about the liver biopsy. I cannot get the thought of the needle outta my head! I wish they would just knock me out. I don't know if I can sit still through it or not, guess I'll have to. Well, I am sure I will deal with it just like everything else, just charge on through head first!

Aaaahhhh, The Weekend

2005-03-05T20:55:00.000-08:00

Glad the weekend is here! Today I started my day shopping with my mom and little girl. We had fun, Iam glad my little one likes to shop, actually, she's just nosy and likes to watch everyone and everything, but that's okay. Then I spent a lot of time at mom's helping get ready for a yard sale. Those things can be a real pain, but I have a lot of baby clothes to get rid of. I have felt pretty good today other than the usual sinus stuff. I certainly cannot complain! Tomorrow I have big plans for this house! There are a few things that I want to tackle. You know, it is really sad when a person is excited about getting to clean on their house. hehe Well, later.

Ready To Relax

2005-03-04T19:06:00.000-08:00

So, glad it's Friday. I don't think I have a busy weekend planned and I am ready to spend some time around the house and doing what I want. Went to PT again today and increased both my treadmill and bike times by 1 minute. Not a whole lot else to report. Just glad to be feeling pretty good and having no plans this weekend.

Blah

2005-03-03T22:21:00.000-08:00

Today was probably one of the hardest days I have had at my job. It wasn't health issues or problem clients or anything like that. It is days like this when it is so very hard to be a supervisor and do the "right thing for the whole" rather one. Anyhow, I had physical therapy today for the first time too. I liked it. I'm excited ti get back to doing something. They are mainly working on my legs with the tread mill and bike until my lungs get stronger to do more weight lifting with my arms. I did 6y minutes on the tread mill before my lips turned blue because I wasn't getting enough oxygen and I did 4 minutes on the bike before they turned blue again. I have to wear my oxygen while doing this also. They want me in there daily and they want met o build up to 15 minutes on each. She also okayed me to do the pool work for exercise when I wanted. I worked late today because they had the Relay For LIfe Kickoff Dinner for my county and I attended for the agency. So, I didn't get to see Madi before she went to bed. That makes me sad! I can't wait to see her in the morning. Well, going to bed, later!

In The Blink Of An Eye

2005-03-02T21:46:00.000-08:00

Again! Meetings, staffing, DUI Evaluations, staff issues, liver doctor calls, and then finally out the door. That was my work day. I went grocery shopping after work and it felt good to have that time to myself. My liver doctors nurse finally returned my call today to let me know that my liver enzymes are still very elevated and that he wants to do a liver biopsy next Thursday to see why. He suspects it may be an autoimmune liver disease like autoimmune hepatitis that has come about in addition to the other autoimmune disease (antisynthetase symdrome). He says that happens fairly often. So, all I have to say is that they had better give me some good drugs! I don't want to feel that needle going in. I wish they would just knock me out, but appearently they don't do that with a liver biopsy. It felt good spending time with Madi tonight and taking my mind off of everything, but her. I can tell when I begin to get stressed because I get these spasms in my back around my shoulder blades. I have them now. I am gonna have to do something about this. I am going to try to go to bed now...later.

Busy, Busy Day

2005-03-01T21:01:00.001-08:00

Today was a busy one. It always is when you miss a day of work. It started off with management meeting. I left there early to watch a close friend of mine adopt her 5th child who is 4 years old now. She has lived with my friend since the age of 2 months. It has been a long process that finally had a happy ending. So, that was a high point of my day. I then went straight to another meeting a lunch meeting actually. In the process, I found out that the first grant that I have to write all by myself is due in 1 month. Yes, 1 month. Great notice, huh? Now, you know where my afternoon was spent. I started to go through my mail at around 4 o'clock and looked up at the clock what I thought was about 30 minutes later and saw it was actually 1 hour and 30 minutes later! That is not cool. I left everything where it was and walked out...I wanted to be able to spend time with Madi before bed because I already have to work late on Thursday night. So,l basically my day was I woke up, blinked and it's time for bed! he he I kinda like days that fly by, but I don't really feel like I accomplished anything. Oh yeah, somewhere in there I went to the physocal therapy place and set up my evaluation for Thursday and I returned a call to the liver docotor, but it was never returned to me. One more gripe I guess...I also got an envelope of 6 Explanation of Benefits forms back from my FORMER insurance company and found out the doctors office has been billing the wrong insurance company! How? They copy my stupid card everytime I go in there! So now I have that to deal with! Looking like tomorrow is gonna be another one of those busy, busy days.

It's Not The Flu?

2005-02-28T22:05:00.000-08:00

I was somewhat surprised when the doctor said this today. I mean, let's look at the facts....fever, chills, aches, pains, sweats, no appetite, sounds like a flu to me. Anyhow, he thinks that I am having a reaction to the antibiotic that he has me on 3X a week. So to determine for certain that it is a reaction to the meds, he has taken me totally off the antibiotic for 1 week. Then if every thing looks good, he is gonna put me baack on it. So, if I get it back again, we will know with great certainty that it is a reaction. Kinda crappy that I would have to go through it again, but how else are we gonna know? Everything else looks great as far as improvement. He seemed suprised actually that I have improved so much so quickly. He said my muscle enzymes are still high and that is expected, but he can tell that I have gained considerable muscle strength back. In fact, he is gonna let me begin a physical program for muscle strengthening and aerobic exercise under a physical therapist now. I am glad I will be able to get active again. He said would just be able to do what my lungs allow, but I am still thankful! Hopefully, the PT's will let me do water aerobics...I have really be wanting to do that. I also only have to get my blood drawn every other week now. This was more good news. My veins are happy to hear that. I guess this turned out to be a pretty good visit. On a side note, I FINALLY heard my daughter say MA MA today. I an pretty sure she it slipped out. You see, she has been saying it for weeks to my husband, the baby sitter, her grandparents, everyone, but me. When I ask her to say it, she shakes her head no at me and laughs (the little stink). But today on the way home from the baby sitter she was jabbering in the backseat and I heard it...then there was dead silence. It was like she realized she let it slip. I few minutes later she started back her jabbering DA DA DA DA. But I heard it!!!! Well, more tomorrow.

The Flu, Round 2

2005-02-27T19:45:00.000-08:00

Well, I have it again. I woke up about 11:30 last night with fever and chills and horrible aches. This low immune system thing is for the birds. My fever is gone right now, but I keep going through these sweats. This is the same identical thing that I had last Monday. I mean my aches are even centered in the same places. So, I have had another day of steering clear of Madi and again that is this absolute worst part about being sick. I am so lucky to have such a supportive and helpful husband. I don't know what I'd do without him.

Back On The Meds

2005-02-26T20:29:00.000-08:00

Today started off pretty slow. I was back on my full dosage of medicines (which I take first thing in the morning). It really slowed me down. I have fever and felt like I was in a fog the biggest part of the morning. I started feeling better in the afternoon thank goodness because Madi had her Easter pictures today. I was very aggravated at JcPenney's. We had a 4:00 appointment and had to wait for almost a full hour. That is hard to do when you have an 8 1/2 month old baby to entertain and to plan feedings around. She still did a great job with her pics though and I cannot wait to get them back. It is just frustrating when you are expected to be on time for an appointment and they stress that, but they run an hour late and nothing is said. I think I will let JcPenney know what I think about that as soon as I am done here. Welll, time to go gripe!

Rat Race

2005-02-25T21:07:00.000-08:00

Thank goodness the week is OVER! It was a busy one. No more crisis call....WOO HOO! I am feeling a lot better still. I called my doctor today to check in with him as he had asked me to. He put me back on all my meds. I have appointment with him on Monday. Not a whole lot else to report other than I take Madi to get her Easter pictures taken tomorrow afternoon. I am pretty excited about that. I found a really cute dress for her. Well, more tomorrow.

The Grand FInale

2005-02-24T21:39:00.000-08:00

This has been a hectic day. I began the day with a meeting and just had things set up back to back all day. The day flew by and before I knew it, it was time to go home. I felt good all day . I think I am officially over the flu. I have one last night of crisis call, thank goodness. But, I currently have a worker out and I hope that is not an indication that it will be a late night! Tomorrow, I get "trained" by my husband at work. He is doing a portion of our staff training tomorrow on computer things. I can't decide if I should be a good student or not. No, I won't harrass him too much! Well, off to soak in a nice, calm, warm bath until my worker calls back about the crisis.

Crazy

2005-02-23T21:50:00.000-08:00

Crazy is the best word for the way today was. I hadn't been to work since last Thursday and gosh did I have a lot to catch up on. I was feeling better still today even though I was up until 2 am on another crisis call. I am feeling a bit sleepy right now and will be hitting the sack soon hopefully. Got Madi's Easter dress today for her pics Saturday. She is gonna be so cute! I can hardly wait. Well, not much else to write on. Until tomorrow...

Back To The World of the Living

2005-02-22T19:56:00.000-08:00

I feel much better today. I was still very tired today, but certainly felt much, much better. I was so tired and out of it yesterday when I posted, I don't remember much of it! The hardest thing about being sick was not being able to hold and be around my daughter. You could tell she just didn't understand why mom wouldn't hold her. My husband said she was acting "out of sorts" all day long. Crisis call still continues. Thank goodness my boss covered for me yesterday. I was certainly in no state to be talking to upset/suicidal people. Looks like I am gonna begin to sell Avon on the side. My mother-in-law has sold for years and I am gonna start to sell under her. I think I will enjoy it. I also got my daughter's Eastger picture appointment set up today! I am excited about that. She'll be 9 months. Well, enough for now...more tomorrow.

The Flu

2005-02-21T20:21:00.000-08:00

The flu sucks. I have it. This is gonna be really short and to the point because I don't feel well at all. I woke up at 4:30 a.m. with the flu. The kind where you have the aches, chills, fever, headache. I am not sick at my stomach nor do I have diahreaa. I have very little to no appetite. I called my doctor. He did blood cultures, blood tests, a chest xray and a flu swab. He then took me off of my chemo drugs and reduced my prednisone until I get straightened back out. He also put me on a flu medicine that is supposed to help me get over it quicker. He cancelled my muscle biopsy all together today too. He was aggravated that the other docotor didn't get me in sooner for it. He said there was no real point in doing it this late after starting the drug therapy because it should be looking better already. So that is one good thing I suppose. That hardest thing today was not holding Madi. She just didn't understand! I sure don't want to make her sick though.

Dreary, Rainy Days

2005-02-20T20:15:00.000-08:00

Rainy days usually make a person tired, but today I had energy. I cleaned, cleaned, and cleaned some more on my kitchen with the help of Madi of course. I even cooked a big supper for us. It had been quite a while since I had energy to do either! Rollie does both of those tasks anymore and does a great job keeping up on it all. I am a lucky girl. The bad this is the cleaning and cooking and the help from my daughter absoluetely wore me out! I didn't have energy left to clean up the supper dishes. I will try my best to tackle them tomorrow, if he doesn't get to them. Tomorrow morning, I go back for the usual blood work and then I have an appointment for pre-surgery testing. I am not sure what all that entails, but I guess I'll find out. It is for my muscle biopsy the following week on Wednesday. I will catch you up on it tomorrow. Wish me luck!

Crisis Call & Babies

2005-02-19T20:18:00.000-08:00

Feeling pretty good today. I woke up feeling not so good. But took a nap and was ready for the world. You see I am on crisis call for my job this week. I got a 3 am call which in turns means very little sleep especially when I didn't get to bed until after midnight anyway. Thank God for my husband who took care of everythign with my daughter this am so I could take my nap and transform into a somewhat productive member of society. This afternoon I tookmy daughter for a drive and then to visit my parents. Her cousin who is 2 months younger than her was coming over and i thought they may enjoy playing togetherl That lasted for a few minutes. He is just a very different baby. My girl is so active and curious and busy...he just wants to be cuddled and lie down and be rocked. She would think you were punishing her if you tried to do that with her! I guess we are all different right from the start. Well, hope that it is a quiet, peaceful, crisis-free night!

Liver Anyone?

2005-02-18T18:21:00.000-08:00

Went to the liver specialist today and didn't learn much more than I knew before. He said with autoimmune disorders often time accompany autoimmune liver disorders. He also said he needs to read more about antiasynthetase syndrome to be certain that the liver isn't typically affected by this. My doctor already said that it isn't. Anyway, he took blood to see if he could determine what was causing my liver enzymes to be so high. If that doesn't tell him anymore, he said he would need to do a liver biopsy to check. He said he would probably get back to me in a couple of weeks. He said that the most common autoimmune liver disorder is actually treated with prednisone, which I am already taking. So, I guess that is a good thing. Anyhow, I am glad that visit is over. The liver biopsy still scares me though.

Sleep

2005-02-17T21:51:00.000-08:00

I am so ready for some. It has been a hectic week thus far. Tomorrow is the liver doctor and I am somewhat anxious about that. My liver is something that has remained a mysterious. He doesn't really know why my enzymes are so elevated. I am nervous that the doctor is gonna want to do some type of really invasive procedure or something. I am how do you examine a liver without poking about in a stomach. Anyhow, Rollie is going with me. I am glad, he is so incredibly supportive and and I am really lucky. I go on crisis call for work tomorrow and will be on for the next week, so sleep may just be a distant memory or a hope for the future...but it is no where in sight for the near future unless a miracle happens and the crisis' quiet down all of a sudden. I suppose stranger things have happened.

Phone Calls

2005-02-16T21:44:00.000-08:00

Seems like everyday I get phone calls from one doctor or another. Today, my surgery for next Wednesday was cancelled. Apparently, the surgeon has to be out of town unexpectedly. It was reset for the following Wednesday (March 2). So the biopsy is off for a week. Doesn't really break my heart or anything, but I am also ready to get it done. Also today, a good friend of mine from college called while I was at work and told Rollie that her mother died on Valentines Day. Her mom was a really good person. She traveled with us on a lot of the college softball trips and was somewhat of a surrogate softball mom to me. I will miss her. It is hard to really know what to say to a person when you hear something like that. I haven't called her yet mainly because I have no idea what to say. You have to get tired of hearing the same old, "I am sorry to hear about your loss". I think I will write to her and let her know how much her mom meant to me and what I thought of her. Well, enough for now.

Beautiful Day

2005-02-15T19:03:00.000-08:00

Today was a gorgeous day! The weather was incredible. I hated being cooped up in meetings at work, but went outside every opportunity I had. I am still feeling good and still have all my hair! So, I can't complain. I slept better last night too. I still went to bed late, but feel like I slept better. Had to call to pre-register for my muscle biopsy today and had to contact the liver specialist with some information they requested regarding my appointment on Friday. It seems that even though I feel fine I still have to deal with doctors, one way or the other!

Vampires

2005-02-14T20:12:00.000-08:00

Feeling very good today. My grandma made the trip to Cape with me to get my blood drawn. We were in and out in 5 minutes. Had a good breakfast at Bob Evans though. It was nice to spend the time with her. I am turning into a night owl again. I am staying up so late compared to a week ago. I was up to midnight again last night. Hopefully, I can go to sleep a bit earlier tonight. My hunny sent me a pajama gram for Valentine's Day. I had never heard of one...it was so sweet. He is so good to me.

The Fam

2005-02-13T18:25:00.000-08:00

Well, it was overall a pretty good day. The start of my day was pretty rocky, but it turned out quite nicely. I woke up to a screaming, crying child and an aggravated, frustrated hisband. It appears that my daughter somehow worked her diaper loose in the middle of the night...and did a bit of "business". When my husband got her up in the morning and found the surprise, he put her in the bathtub to clean her. This is where the screaming crying child and frustrated, aggravated husband came into play. She hates her bath and he had never had to give her one before. Anyway thank goodness, the day did get better. The visit with the inlaws was nice. Madi was in a great mood (as usual), the food was good, the fam wasn't too crazy. So all in all a good visit.

Exerting Myself

2005-02-12T18:46:00.000-08:00

I got a lot done today. I feel accomplished. My mother came over and we really kicked it into gear. I got winded a lot, but I used my oxygen like a good girl. My daughter was an angel too...she just entertained herself so well while we were busy. She is such a good baby. Well, tomorrow is a get together with my husbands family. We are going to his aunt and uncles house. It should be interesting. Not much more to report on today. Look out for tomorrow!

Finally Friday

2005-02-11T19:05:00.000-08:00

I am so glad we are at the week's end. I got my wig fitted this morning. It is okay. I will wear it if I have to, but hopefully I won't have too. The lung doctors office called today too. They want me on oxygen at night, so the medical supply people came and set that up for me this evening. We have a pretty busy weekend set up. But, I really want to try to relax and kick back a bit. I am ready for this taking it easy thing.

Nose To The Grindstone

2005-02-10T20:03:00.000-08:00

Well, I was finally back at work for a full day. So it was back to a million, "how are you feelings?". I know and I am glad people care, a person just gets so tired of answering the same darn thing all the time. I actually stayed and worked a bit late today because I am coming in late tomorrow. I am planning to get my wig fitted and styled tomorrow morning before going to work. I also got my paperwork sent in for my handicapped packard. I will be glad when I get that in. Well, not a whole lot going on...just chugging along.

Done with Doctors

2005-02-09T19:07:00.000-08:00

At least for the week, I think. I got my oxygen today and I got the sleep test machine for tonight to see if I am getting enough oxygen during the night. I then saw the orthepedic doctor, Dr. Thorpe. He scheduled the muscle biopsy for 2/23 in the morning. They are going to put me under for the procedure. Sounds better than a local to me! I have been feeling pretty good today. I had a bit of a slow start this morning and had to sleep in a bit, but overall it has been a good day. Still no hair loss as of yet. The people that I ordered my wig from last Saturday called and said that it was in. I will call them back tomorrow to try to schedule a fitting and styling. Hopefully, I will never have to use the darn thing...but if I do I will at least be prepared.

Today

2005-02-08T22:30:00.000-08:00

Today, I got a bone density scan. This is to monitor how my bones are doing. The chemo and prednisone combo can affect my bones and cause osteoporosis. So, I will periodically have to get these. It was absolutely painless. I then went to meet with Dr. Graham, the lung specialist. He took a fairly lengthy medical history, did a few breathing tests with and without oxygen, and looked at my breathing test results. He decided that this is probably just something that goes along with the syndrome and that the treatment for it is basically what Dr. Taylor is already doing. But, he also felt that I needed to have oxygen when I am exerting myself (whatever that means) and that I needed to use an inhaler a couple of times a day. He also wants to do a sleep test to see if I am getting enough oxygen at night or if I need to use oxygen then too. Thank goodness this test is something that I can do at home and not at a hospital. I get my oxygen tomorrow and I started my inhaler today. I get hooked up for the sleep test tomorrow too. He wants me to have all those breathing tests redone in mid March. If they aren't better, he said he will look into doing a lung biopsy, but to just keep it in the back of my mind right now. Believe me, I will keep it way, way in the back...lung biopsy just doesn't sound remotely appealing.
On another note, my wonderful husband has went with me to my appointments that last two days and I am very grateful for that. I know how very much he hates doctors, but I also know how very much he loves me. Thank you honey.

Yesterday

2005-02-08T22:11:00.000-08:00

Well, I got a bit distracted yesterday evening and forgot post. Dr.Taylor, the rheumatologist, told me that he got another blood test back. It was the JO-1 test and it was positive. He said this basically means that what I have is going to be more difficult to treat. He took more blood to monitor my white blood count. He is going to do that once a week for the next month and then I see him again unless the labs come back abnormal. He also consulted with a doctor out of Tulsa, OK who is supposed to be one of the leading guys on this syndrome. The other doctor recommended the exact same thing as Dr. Taylor. He offered to let me see him, but I don't see the point right now. Especially when Dr. Taylor would send me to him without hesisitation if he ran into any roadblocks. Anyhow, I am still anxious, sick, and tired of going to doctors. The prognosis is guarded. It appears this is something that I will always be dealing with. I will have remissions and exacerbations. I am beginning to feel a pull toward God right now. I am not sure what it means or how to even explain it. I just feel a closeness and I almost become teary eyed at times. I also feel a lot of fight burrowing up inside of me. The "Robin" that I remember is seeming to come back ... I don't feel so lost in the shuffle as I was. I am ready to take it head on.

Anxiety

2005-02-06T19:49:00.000-08:00

You know, being anxious really sucks. I try to act like everything is fine otherwise I feel like I have everyone staring at me like I'm getting ready to do so sort of magic trick. There is one person and one person only that I just can't hide it around. No matter how hard I try, he knows just what buttons to push to bring it out of me. Unfortunately, it doesn't come out in a productive manner whatsoever. So, he avoids me that rest of the night and I am alone. All I want is to be in the same room with someone. I don't want to talk, I don't want to argue, I don't want to snuggle up...I just want to be in the same room. Needless to say...I am feeling a bit of anxiety for my upcoming doctors appointment tomorrow.

First Time For Everything

2005-02-05T19:46:00.000-08:00

Well, this is the first time I have ever had my very own blog, but then again I am experiencing a lot of firsts lately. You see I have a new baby, well, she is almost 8 months old. While I was pregnant with her, I began experiencing some fatigue, very stiff sore joints, and I got out of breath very easily. Sounds like a normal pregnancy huh? Well, that's what I thought.

I went to the first doctor (a Danny Bonaduce lookalike) who was the only person that I could get into on short notice at the clinic, about 1 month after giving birth. I told him of my symptoms and this dry hacking off that I had developed. His first question was "When was your last pap smear?" I very politely informed him that I had just given birth a month prior and rest assured everything was in working order, could he please just address the symptoms that I am presenting to him. He told me to buy Afrin Nasal Spray and Robitussin.

I went to my actual family doctor about 2 months later. I explained to her the same symptoms, along with this unbelievable tiredness that I felt all the time and unexplained weight loss. I had lost quite a bit of weight during my pregnancy and I lost even more rapidly after the birth. I just had no appetite at all. She decided that it was a sinus infection and that I had a touch of post partum depression. So, she treated me for the infection and prescribed me some Lexapro to kick the Depression. I notice an improvement on my energy level, but my joints and muscles were still absolutely killing me.

I went back 1 month later to her for a followup. She took some blood. She called me back in and said she was concerned about my blood test results because it looked like I had Rheumatoid Arthritis and that my liver enzymes were very high. She wanted to send me to a Rheumatologist to better treat me.

I went to see the Rheumatologist about 6 months after having my daughter. So, by the time I got there, I was in a lot of pain and had been for quite some time (the symptoms actually started in the 5th month of my pregnancy). He did a very thorough physical exam, took labs, and took xrays of my hands and feet. He told me he suspected Rheumatoid Arthritis and wanted to begin to treat me for that. He prescribed Bextra and Plaquenil. He was wanting to prescribe me Methaltrexate, but with my liver enzymes still so elevated and not knowing the cause he didn't.

I began to take the medication. He had scheduled me to return to see him a couple of weeks later on a Monday. I got a call from his nurse on the Friday before I was to see him. She stated that he wanted me to get an untrasound of my gall bladder and my liver because my labs came back abnormal again for my liver. So I went to the hospital for that prior to seeing him on Monday. I had noticed some improvement in my overall pain and somewhat in my energy level since he had placed me on the medication. But, I still couldn't do so many things that I once could. I could not even get in the floor to play with my daughter. I came ready to report this to him and I had questions written down to address with him. As soon as he entered the room, he said, "Well, this is a going to be a bit more complicated than I had originally anticipated." It is not just Rheumatoid Arthritis, he told me that he thought there is a second type of arthritis that is attaching my muscles and that he needs to do more testing to pinpoint what type so he knows how to best treat it. He told me that I had tested positive for Lupus, but that he felt it was a false positive because of the 2 types of arthritis that my body is encountering. He said to stay on the same medications for now. He also told me he wanted me to see a liver specialist because of the unexplainable high liver enzymes.

I was scheduled for a full day of testing at the hospital. I had an EMG test on my right arm and leg, a CAT scan of my chest area, and a breathing test. The breathing test was the worst. I could not believe how much worse my breathing had gotten in such a short period of time. The nurse had to wheel me out of the testing area because I was unable to walk.

I went back to see him again last Monday. I again came prepared with my list of questions and the first thing out of his mouth is "You do not have Rheumatoid Arthritis". He told me that what I have is much worse. I have something called anti-synthetase symdrome. It is a rare auto immune type disorder. It affects the connective muscle tissue in your body. This is why my breathing has gotten so bad so quickly and why it so closely resembles Rheumatoid Arthritis. He said the best way to treat it is very aggressively with 2 medications that are very nasty with very nasty side effects. He was extremely concerned about my breathing tests and stated this is why he felt the need to attack so aggressively. He took me off the medications he originally prescribed and placed my on Prednazone (a steriod) and cytozan (chemotherapy) medications. He prescribed a couple different supplements as well because of the negative affects these medications will have on my body. He said I will not be able to have any more children probably and that I will probably lose my hair as a result of the chemo. He said the medicaiton could very likely make me sick. It basically attacks my immune system to slow it down so much so that it will quit attacking my muscles and my body.

His office called me on Thursday and placed me on an antibiotic to help my immune system fight off actual illness'. He has also scheduled me to see a Lung specialist on Tuesday and to get a bone density scan on Tuesday as well. I am to see a Orthepedic specialist on Wednesday about getting a muscle biopsy on my deltoid. The EMG indicated that muscle as the one being most affected by the illness.

Long story huh? Well this has all come about very quickly and I am trying my best to cope with it. My family is having a difficult time but they are all trying to stay strong for me...and I appreciate that, but I tend to feel like the elephant in the room. You know, everyone knows what's going on, everyone stares, but no one really wants to talk about it.