Time to Play Catch-Up

I can't believe I haven't updated the blog since April.....sorry. Things have been moving at what feels like warp speed and I seem to be spending most of my time trying to just hang on for the ride.

I think I am heading for remission as far as the UC is concerned. I had a bit of a problem the first week of June but it is over and I am doing incredibly well. I still have an autoimmune disease and I am up to taking 12 pills daily for that, plus the injection once every two weeks. I take 5 more pills every day to support the needs of my body that the other pills decrease; potassium, B-complex, lots of Vitamin C. The hardest part of things right now is remembering that I have no immune system and I still have to be careful. It is harder to remember that when I feel so good.

On my work front, the state just passed a stop-gap budget. Not ideal, but at least we can start our program year, so I am happy about that. I have two trips to Springfield planned this month. Hopefully, we get to work on bringing back our Percentage of Income Payment Program, I love this program, it has been a lot of hard work, but I feel like it is so worth it.

Here at home, Andrew is having his busiest summer ever, and we are so thankful to God for our clients and the continued work. Right now, we are booking into the middle of August. That makes me very happy, I just pray the phone keeps ringing.

We have a new face in our house, now if we can just get the house to survive her growing up stages. Jasmine aka Jazz, is our new kitten. She is about 13 weeks old now, and into everything. Gibbs was never like this and we don't quite know how to handle her. Gibbs has been the cute one though, he absolutely loves her. I thought he would be a good big brother but I think he thinks he is a dad and that is okay. They spend 90% of their time together and I love it.

Because Andrew has been so busy, the guys haven't spent much time on Robert's house. They are planning on working on it today and Monday though, so hopefully they can make some progress.

On Memorial Day, we did take a family day and headed to Kentucky. My theme for the day was "Planes, Trains, and Automobiles". We took in the Corvette Factory, the Kentucky Railway Museum and the Aviation Heritage Park, all in Bowling Green. We ate at Chaney's Dairy Barn for lunch and of course, had to hit Moonlite BBQ in Owensboro on our way home. It was a great day and probably as close as we are going to get to vacation this summer. I am planning another family day the 23rd of August, when Robert takes his week of vacation. We are going to Columbus, Indiana. I heard about this town at our annual IACAA conference, and really wanted to visit. Ironically, the center of all the change for them was the Cummins Diesel Engine factory, which now you can understand why the boys don't mind following my little dream.

I am planning on taking a lot of Fridays off this summer. My mom is still having some blood issues and so we have spent several Fridays in Terre Haute at the doctor, we don't go back until the 22nd of this month. Yesterday, she didn't have to go to the doctor so we just went shopping, and grocery shopping for the fun of it. That leaves me with the whole day home today. Not leaving the house. It is pathetic how excited that makes me!

We started off the 4th of July weekend with a concert in Robinson last night. It was our 2nd annual community band concert and I was so excited and honored to be a part of it.

I may try to post pictures here this afternoon.


Happy 4th of July everyone! Be careful!

Spring...FINALLY!

What a great weekend! I know it's been a while so I'll try to catch everybody up.

 As far as the Humira, I've had my loading injections, my two injections two weeks later, and did my first regular injection last Wednesday. So it's honestly only been four weeks but a glorious four weeks! I am so very excited about how much better I feel and even though I won't go into graphic detail it is very clear that it is working. So my next goal is to head for the big R word – – – remission. 

As far as what's been going on in our lives, it's been a borderline zoo. I've been in Springfield three days in the last two weeks and going again this coming Thursday. Then I skip a week and go for three days. One meeting I was at felt like it kept being stalled, but the last meeting I was at was really good. We've got some new leadership at the state level and I think things are really starting to come together. Hoping the meeting this week is very productive too. When I go to Springfield for three days will be for the annual IACAA conference. This is the one that starts out with the family of distinction, you've heard me talk about it before, my favorite night of the year.

 We've also been extremely busy at work because Ameren has a moratorium through the winter months and doen not shut off. Moratorium ended at midnight on March 31. So everybody is getting shut off. 

Robert has been staying very busy also. He hasn't been making it home before dark a lot of nights. Andrew has been working six days a week lately ( if my father-in-law is reading this, you can say I told you so.) he has been working on a good size tiling job but it is turning out beautifully. I think at the moment he has four clients lined up. I told him this morning when he got down to two I would start praying for the phone to ring again. He told me to start praying right now.

 This weekend has been absolutely gorgeous and we finally got our yard mowed, some trimming done, and the rocks cleaned out around our house. Andrew and I set fire to the big brush pile in our backyard last night and decided while we had a fire we might as well have hotdogs and Smore's. That was a fun little mini date night. So today has been pretty decent, The house is all cleaned up and ready for the week, I made homemade noodles and turkey for lunch and Andrew is making peanut butter pancakes as I work on this. 

Hope everybody is having a great time with this wonderful weather looks like we could have some rain by the end of the week. We'll take all the sunshine we can get when we can get it. 

My mom seems to be doing a little better too, her arm is looking much better. Her biggest problem is she isn't being able to work as hard as she used to and that bugs her. She says she doesn't understand why there are days she feels old. Andrew just hollered that supper was ready so I better get. Hope everyone has a wonderful week!.

Praises

It is a little before 6 on Saturday morning and I just finished my weekly post for my other blog : www.louderthanthevoices.blogspot.com I thought I would share what has been going on with life with Humira.

First off, I have taken both my loading dose (4 injections) and my 2nd dose (2 injections) of Humira. Everyone said give it six weeks to really notice any differences but I am noticing major differences already!

I went to the doctor yesterday and he is excited as well. I take 3 medicines now dedicated to the UC, on a daily basis; Humira, Azathioprine and Sulfasalazine. I have been having some stomach issues lately and I attribute it to the Sulfasalazine, because of the timing of the issue to the timing of taking the medicine. I asked if I could quit taking it and he said not yet, but did let me go down to 3 times a day instead of 4, it's a start!

I am still taking prednisone but weaning off of it too and so all is good.

Andrew is working at a job site today and Robert is helping him. I am going into my office as I got back from Springfield last night and had such a stack of stuff to do, I thought it best just to go home, get some rest and tackle it today. So, the guys what to go to Parklanes for breakfast and then we are all heading to work.

I may write more later, but at least I can share that I am doing great!

The Waiting Game.....hopefully One. Last. Time

On January 7th, when we started talking about me taking Humira, I never really dreamed 2 months later, and I would still be going through the motions to get there. The Humira was actually delivered last week so 6 injections are in my fridge. I go see the infectious disease doc next Wednesday, the 16th. I truly believe I can schedule my training and my first 4-shot dose after that. I am really hoping for the next week.

I had a bit of a setback last week. I have done as little as possible outside of work since January. The results of the colonoscopy were scary to me and it made me realize that as badly as there are other things I want to do, I want to keep my colon worse. I have since learned that new strides are being made to not immediately go to a bag if you have to have a resection, but I have lived with my mom having part of her bowels missing for over 30 years and it has a lot of unpleasant problems as well.

Last week, I went grocery shopping on Monday night, went to Springfield on Tuesday, fixed stuff for birthday night on Tuesday night, did AWANA Wednesday night, and helped get ready for Grand Prix on Thursday night. For most of my life, this would have been a typical week. Thursday afternoon, I started feeling really bad but assumed I was just tired, after all, this was a lot more than I had done forever. By Friday morning, it was clear I had a sore throat and a cold. I tanked up on cold medicine and went on.

In the middle of this, I had chosen last Monday as my day to wean off the prednisone. I also, decided since I was coming off the prednisone, I would start counting calories again and try to get some of this last prednisone weight back off. Of course, it is natural to want to eat more fruit when you do this. Just for the record, fresh fruit and UC don't mix well if you are having a flare.

This pretty well set me up for a bad time. By Friday evening, my UC was in full flare. Saturday, I tanked back up on prednisone and cold meds and made it through our Grand Prix as well as went with Andrew to Champaign to get supplies for a job. I really didn't feel too bad but knew it was time for some down time.

I stayed home from church Sunday and from work on Monday. I called my doc Monday and got scolded regarding the tapering on such a busy week. What was I thinking??? Well, yeah, after I realized it, I thought the same thing.

So, today, I think I am feeling better. If not really, at least prednisone induced feeling better and that is doable for now. I am so ready to start the new meds and feel totally prepared. If nothing else, I don't think there has been an inch of my body that hasn't been inspected inside and out in the last 2 months and everything looks good except the UC, that's a bright side thing.

I did go ahead and give up hope and getting back to AWANA and I let my friends in the LTC band know that I wasn't coming back for this semester at all. As badly as I wanted to, it is kind of a relief just to have it out there. My evenings now can be planned to be resting most of the time.

Andrew is pretty well booked this month which is a great comfort to me. He has started deciding that if he is doing a good sized job (which he is now), that he will commit to 4 days a week, that way, when someone has a little emergency, or a little job, he isn't making them wait over a month. It is going well. I am so happy that he loves what he is doing. I really don't think I have seen him love his job since he left the tire and lube shop. My only regret is we should have done all this when that happened.

I am not posting this on fb, I am SOOOO tired of feeling like I'm whining. I am really putting this on here as a diary for myself of where I'm at. And, I thought sometime in the future, if the Humira works for me, some of my experiences might help someone else going through it.  So, if you stumble upon this on your own, here it is.

Ahhh...

I had been looking forward to this weekend for so long that I was afraid I might have hyped myself up too much and I would end up being disappointed. I just don't think that will ever truly happen when I get to spend time with my oldest and dearest friends. I left my house at 6:15 on Saturday morning headed to my friend Valerie's house in Onargo, Illinois.I met Tammy there and Valerie drove us into Chicago to Dani's house. From there, Dani took us downtown to the Art Institute. We ate at Potbelly's before getting in line for the art Institute. There is a temporary exhibit of Vincent Van Gogh's Bedroom paintings. This was the first time the three versions have ever been together in the US, and we got to see it! We spent some time standing in line, but it was seriously not a problem to any of us, it just gave us more time to visit. I wrote on my other blog that there is just something different about getting together with these girls. It is totally when I can drop my guard, let my hair down and just be me. These girls know more about me than anyone- even if we go for a while without talking. Anyway, loved the exhibit, took in some other sections of the place then headed back towards Dani's. I know none of us really wanted to leave but we knew we had to get on the road. We left Chicago at 6 and I made it back to my house at 9;58. Oh, also, just for the record, it was over 60° on the 20th of February. And you are welcome, I know of 4 ladies who prayed hard for good weather and God blessed us. 

Tonight was our family night/ Valentine's banquet at church.  We played Bible trivia before our meal. Our team won (yeah us!) and then Mike Saathoff catered our meal. Just a great time. So my weekend was everything I wanted it to be and I am pumped to start a new week. My plans are to be in my own office all week- we'll see how that works out. 

Hope everyone had a fantabulous week!

Happy Sunday!

another update

So, my dreams of making it to February 16th, seeing the infectious disease doc and then getting to start the Humira was dashed. I have a new appointment with him now on March 16th and there is a possibility I will get to start it after that.

I have to tell you, even though I hate waiting, I am so impressed with my doctors and their thoroughness. Dr. Omarro seems to know as much about Humira as Doc Petterson. He asked how long ago I was diagnosed, I said 6 years. He asked if I had ever went 12 months without prednisone: no, I'm on it right now. He said, "then it is time to try this." However, I have already been on Imuran for 3 years, so I have basically no immune system. I take lots of vitamin C and avoid touching others when I can keep from it. Right now, getting sick with a cold, or anything could set back the timeline so I am avoiding pretty much everyone when I can. Tuesday, I got a flu shot, and was told I now needed one every year; I got a tetanus shot and told to get one of those every 5 years. I was tested for Histoplasmosis,Coccidioidomycosis, and Blastomycosis. Apparently these are bacteria that can be found in the area I live. I was tested last week for Hepatitis and TB, both came back negative but this week I was tested to see if I am immune to Hepatitis. If the answer is no, I have to have vaccines for that before I start the Humira. And I was warned that we could jump through all these hoops and start taking the Humira only to find out it doesn't mesh well with my system and I can't take it. Having to be on prednisone yet again right now makes it worth it to me to try. I have lost 11 lbs and gained 16 since the first of the year. That is what prednisone does- and it doesn't matter what I eat, I gain weight. 3 1/2 years ago, I was almost 80 lbs lighter. Not being able to go a year without prednisone has made it impossible to even get a good running start on losing the weight again. Friends of mine who are on Humira say I will feel better, a lot better. I am looking forward to feeling like exercising and being in remission to where I can actually keep something going long enough to see results. 

The more I read about Humira, the more I think I should be worried but I am just not. I am just afraid it is not going to work but I am trying to just have faith that it will. You see that thing going around Facebook about the diseases that you don't "look" sick. This is one of them and somehow I think the UC goes hand in hand with type A personalities who are bound and determined not to let this rule them. My doctor is constantly telling me to slow down and this time I actually have. I do feel guilty about it though. I am hoping a few months of "sitting on the bench" pays off here in another month or so. I am trying to hurry and get over the flare I am having ( the worst is over, just can't get it to stay gone without the prednisone yet). I am living for this coming Saturday and a much needed girls day out with friends. 

That's where we are at right now. I took Mom for an EEG and MRI of her head yesterday, hopefully we will find some answers for her soon too. 

I Reread the above post and feel like it looks like I'm complaining, please don't read it that way. I am not, just trying to get all the facts in one place for friends and family who want to know what is going on. I thank God that I still get to go to work and that I am not in the shape I was 3 years ago. Right now, this seems to be the only health issue I have and compared to what some of my friends are dealing with- this is not a big deal.

Thanks for the prayers though, they are always appreciated!

Safely Through Another Week

This last week has been one of those borderline crazy ones. Friday was probably the craziest as Mom had to be in Terre Haute at 9:30 and Andrew in Casey to have teeth pulled at 1:30, we got through it all though and made it home around 3. I was so relieved to have gotten it all done with no conflicts.

I am thankful to say this has been a better week for my UC. I even went for a mile walk this morning. I love when I get back to being me. I got up at 3 this morning, a little prednisone-induced insomnia, but I loved how my morning went anyway.

I have stopped all of my "extra-curricular" activities until I get the Humira started. My doctor prescribed rest, rest, and rest and I can feel it is working. I miss Yoga on Tuesdays, AWANA on Wednesdays and Band on Thursdays, but this time I have really found the value in coming home of an evening and not doing much. Andrew has fixed supper most of the time so I truly do just come home and veg. A friend of mine from band sent me my music so I can practice, and playing my flute is always good for me.

This week, Mom goes to two doctors tomorrow, and Wednesday I have meetings in Springfield, I have a Mammogram on Thursday. Right now those are the only things on my schedule. I do have to tell you, I have the best assistant in the world. We have a fieldworker out sick and I was trying to figure out how to get that office covered for the week. She made it happen, by doing it herself. I know it is not her favorite thing to do, but so very thankful she was willing. That took a BUNCH of stress off of me, especially as much as I need to be out of the office this week myself.

Andrew has work this week, which is always good, and so life just keeps flying right along. Can't believe tomorrow is February.

I am basically living to be healthy for two things right now. 1st, to be good to go with the Humira injections (hopefully okay-ed after the 16th) and then, three of my best friends from High School and I are going to Chicago to see the Van Gogh exhibit at the Art Institute on the 20th of February. I don't know if some of my childhood friends remember, but I had a dog named Van Gogh. Seeing original Van Gogh's really was on my bucket list. And spending the day with people who know me better than absolutely anyone else in the world, AND like me anyway.....priceless.

Happy Sunday!

Update

Well, if you are are following what is going on with the UC, thought I would share. I did quit bleeding and hurting so bad Tuesday morning, just in time to stay out of the hospital. I am seriously doing 1000 times better than I was a week ago even. I am still tired. I am down to 50 mg of prednisone, but it takes me through a loop of highs and lows, and the ever-present hungry. I am going to try to get up in the morning in time to do some exercise, right now, I'm thinking a Leslie Sansone video, but it is a start.


I have my infection disease appointment on the 16th of February, after I get the okay from him, we can schedule the training for the Humira. I have to see the dermatologist too. I had that appointment scheduled for the 3rd of February but had to reschedule it for a work conflict. It is now on the 25th but Dr. Peterson said we didn't have to wait on it to start the Humira, I will just need to see her once a year for skin cancer screening.


So, this is the week, I am planning on getting life all back to normal. I am planning on going to Holy Yoga on Tuesday (it's restorative night, so it's pretty laid back), AWANA on Wednesday, band on Thursday. Friday, I take Mom to the neurologist in Terre Haute at 9:30 and Andrew to the dentist to have teeth pulled at 1:30. That one may turn into a long day. I also am supposed to play at an LTC ballgame with the Pep Band Saturday night.


So, here is to a normal, no-crazier-than-normal week.......Bring it on!

What's on My Mind

That is a loaded question this week. I last posted the day after my colonoscopy. So much has happened in that time that I'm not even really sure where to begin. We did get Robert a truck, or correction--Robert got himself a truck. Someone told me last night we needed to stop buying him new trucks, so I thought I better confirm; his money, not mine. On Sunday, he broke up with his girlfriend, I do understand his reasons, but this one will still take some adjusting for all of us.

I mentioned last week that I had talked to my doctor Friday night, I was still having issues from having biopsies then, this week, I ended up with a full-on UC flare. I have been in and out of work all week, trying to replicate down time, and sitting with my feet up. When you are a strong type-A personality, you have to consider when not being at work causes you more stress than being there, as I said, I opted for a happy medium. Don't get me wrong, the assistant coordinator CAN do my job, but she is busy too, and I want to do my job. Anyway, holiday tomorrow is a good thing.

I have until Tuesday to get to doing better or I have to go to the hospital. I am not in nearly as much pain now, so I think there is a good chance I will stay away. After talking to my doc again this last Friday night, we are pushing forward with the Humira. I am going to ask for some prayers here. I have a friend who is on it and loves it. My doctor still wants me to be thoroughly checked out before he will approve it. I have to see an infectious disease doctor as well as a dermatologist, then have tests and if it looks like I am a good candidate, we move forward. Because of the consistent damage, it doesn't sound like resection is a possibility; removal would be the other option. I do not want to go there.

I have read the horror stories, I have read the good stuff. The good stuff looks really good and by what I am reading, and what Dr. Peterson has told me, that is why we are jumping through all of these hoops before I start, if it looks like I am likely to wind up a horror story, we aren't going there. I want to be successful. I hate failure, so setting me up to not be a horror story is a good thing.

As I said, prayers are greatly appreciated.

Andrew threw some excitement into the mix this week as well. Sunday, his face swelled up like a balloon. Because of working for himself and just starting out, I had not gotten him dental insurance last year, we went for the year trying to self medicate some bad teeth. Sunday, he was eating garlic, a teaspoon at a time. I had gotten him dental insurance this year and Monday I called to see if it was active, it was, so we made a trip to the dentist. He has a minimum of 6 teeth that need pulled. We are doing 2 on the 29th. The dentist would really like to try to save a couple so he could have a partial plate instead of full on dentures. At least we got him some antibiotics. Needless to say, neither one of us have just felt stellar this week, but he demanded that it was more important for me to rest than him. He has been a God-sent this week, fixing supper, doing laundry, and keeping the dishes done up. It is his slow time of year but he still had work 3 days out of 5 last week. That's a blessing too.

Yesterday, the guys stayed home from the farm and got all of my Christmas decorations taken down. This was one of my main stressors about being home.  I am not supposed to lift when I am having a flare, I am so happy my house is back to normal!

Last night, Andrew and I went to the Jasper County Talent Show, part 1. What awesome talent we have in the JC. Last night's contestants were all smaller kids, Kindergarten through 6th grade. This afternoon it continues with the Jr. High and High School students. I am looking so very forward to it. (and best wishes to my Sunday School student, Ashley!).

We had a huge, unexpected blessing yesterday afternoon too. I had been praying about what all of these medical expenses I was going to rack up was going to do to us and the answer came in the mail. God is good, All the time.

I have asked for some help on facebook about the history of our house, I am finding some really neat information. I am going to have to find out more about Carmen Earnest, sounds like she was someone I would have really liked and I believe she owned this house when I first fell in love with. 

So, it's Sunday morning, time to go get dressed for church, the snow is falling and though it doesn't sound like we are going to get a lot, I love the peacefulness of it.

Meatloaf is made, Mac and Cheese is ready to go in the oven. Sounds like perfect lunch food for snow coming down. I promised the cat I was staying at home all day tomorrow and vegging one more day.

Happy Sunday!

Starting the New Year

I am seeing so many positive posts on facebook that makes it look like 2016 is starting off well for lots of my friends and family. Ours has started off pretty non-eventful, Andrew and I watched tv until about 9:30 and then went to bed on New Year's Eve. I had to get creative to see the Rose Bowl parade this year as with the Roku, I would have had to wait. I watched it from a live feed in California and loved it!

The year started out with a bang at work as well. One of my dear friends and co-workers retired the last working day of the year, so several of us took on new responsibility in her absence. I think it has to be a tribute that several of us are stepping up to fill different areas of her shoes.

I also spent two days with sick verifiers so I took on that hat for a couple of days.  Let me just tell you, that is the one thing that I am so very bad at. Remember, I was never a verifier, so I know I don't do it as well as the girls who do it all the time. I tell all the vendors this as well. It is good to get to talk with them on this level and I know it is good for me to switch gears and remember what the girls in the field are going through.

Thursday was the highlight of my week, or not. I had a colonoscopy. My third colonoscopy in 5 years and 5 months. I do have to tell you, because I have Ulcerative Colitis, they did a "gentle prep" and I have to say it was a million times better than the first time. My second one, 151 weeks to the day from the third one, was unplanned and unprepped, it was still not fun.  I guess I gave them quite a scare though yesterday. I was already under the first sedation medicine and I was talking to one of the nurses. We were talking about being type A. Right before I went out, I said, "I am so Type A, I will probably drive home". They all went in a frenzie, and apparently went running to Andrew and telling him to NOT let me drive home. Well, duh......why do they listen to anything said after sedation?
When I woke up, I was seeing three of everything and felt like I was being raced very quickly down the hallway by two very fast talking nurses. The downside is I heard what they were talking about---how many biopsies my doctor took. The nurses lost count.

I need to back up and say, I was really expecting this report to be better. As I was down to seeing two of everything, here come Doctor Peterson. He told me he wasn't happy, things were worse. I then proceeded to tell him I had quit taking one of my meds because I realized it was causing some problems. So he told me a different one he wanted to try.

After I got a little more with it, I started realizing what he said, and was pretty sure what he wanted to do, I didn't. This morning, I did some research on the medicine he wanted to start me on and sure enough, it contained Asacol. The worst of the worst for me. I emailed him.

Let me just tell you, I have THE. BEST, DOCTOR, IN, THE, WORLD. He called me at 5 this evening and apologized for not remembering my adversity to Asacol. Okay, he made that decision standing over me, without any of my records. He really thought he should have remembered I can't handle it. Okay, I know, I would have been the same way, but somehow when he does it, I know that's not normal. Anyway, I have a friend who was just put on Humira and loves it, so I told him her results. He wants me to wait a couple of weeks on just what I am doing now and see where I am, I am to call him back in two weeks and let him know how I am doing, if I think I need the Humira, we will go forward. If I think I am doing well, we won't go there yet. have I mentioned I have the best doctor in the world? I told Andrew last night on our way home, he is such a sweet, caring guy, I truly hope he has a life outside of his medical practice.

Oh, and of course, he had to tell me why he took so many biopsies. He didn't see anything that looked like cancer but he still needs to monitor for change. If there would be any significant change, it could be pre-cancer and we would have to talk about removing the colon. I am so not ready to go there and I did promise him that if I didn't feel like I was doing really well in two weeks I would gladly sign up for a shot in my stomach once a week.

So, today, I was back at work, lots to do but it was a good day because I got lots done. :-)

Tomorrow we go look at a truck for Robert to replace the one he totaled the day after Christmas. Funny, he found this one at the same dealership he got his first really nice car, so we are hoping it is just as nice. I also have my next devotional on my other blog Louder Than the Voices ready to go. Check it out after about 2 in the morning.

So, 2016 isn't off to a bad start for us either, Andrew has had work this week and that is great for this time of year and we are all still standing.

Happy Friday night!