10 Months

Rick went in for bloodwork this week because he is itching all over. Itching is a side effect of the PSC that he has managed to avoid up until this week. His bilirubin is elevated so the doctor that was in the office wants Rick to have an ERCP as soon as possible. The regular GI doctor that Rick sees is out of the office until monday, and his soonest available time for the procedure is not until February 25. On monday the nurse will call back if the doctor wants him in sooner. Hopefully the ERCP will clean up the bile ducts and help stop the itching. This is just another log on the fire I guess.

So I was thinking about how Rick was having another procedure. And it got me thinking about what has happened to him in the last 10 months.

This will be his 3rd ERCP
2 Ultrasounds
1 MRI
The Mayo Clinic
Gallons of Bloodwork
Testing for Lymphoma
Testing for Wilson's Disease
Testing for Hemochromatosis
1 Epidural Injection
1 Colonoscopy
An unstable and bulging lumbar disc
Gilbert's Syndrome
Itching
Cholangitis attacks

I don't know if I left anything out or not but that is a list of everything I could think of right now. And it is of course not in any type of order either. As I look at that list I realize how the doctor's bills go so high. Not to mention the amount of medication he takes. And that does not include the regular checks with the different doctors involved in Rick's care either.

It doesn't make it any easier now that I am having stomach problems as well. I do think that I am starting to feel a little better. What I eat makes a difference in how I feel. Like today I was feeling okay until after dinner. But at least it is getting a little better. I need to take care of myself so that I can take care of Rick. That is what the doctor said to me anyway.

So now we have a new issue to deal with. I just pray that nothing worse is going on in that liver. Rufus better be behaving himself. (we named the liver Rufus)

This too shall pass.

Until next time,
Jaime

Benefit

I couldn't decide if I wanted to post about something wonderful that is being organized for our family. But when I thought about it there are a lot of people that read this blog that I don't know that might want to know about it. So here it is:

On March 24th there is going to be a benefit dinner and silent auction for Rick's medical bills and other medical needs. This is being organized by our wonderful friends Heather and Sam. We went to high school with Heather and she teaches percussion with Rick. Sam is the marching instructor. They are ones that came up with the idea and have been planning it for a while now. There are really no words to describe how it feels to have someone care so much about our family and my husband.

The plan is that there will be a dinner with live music. The drumline will perform along with other school groups that will be the opening acts for a local christian rock band Beaf. There is also going to be a silent auction going on as well. Currently Heather is gathering donations for the auction. If any of you want to contact her you can email her at hbrown@cvsd.org . I will update with more information as the date gets closer.

I did hesitate about posting this information because I don't want anyone thinking that we are asking for donations. This is all possible because of the generosity of some very close friends. This is a very humbling experience. I have been to benefits for families before and I have known people that have needed them. But to be the family that needs this now is overwhelming. I can't believe we are in this situation, but by the thoughtfulness of some friends it is easier to handle.

Numerous times I have wondered when Rick is going to get a break. I have wondered why all these bad things keep happening to someone so good. I think that God had a hand in guiding Heather to do this for Rick. This is such a blessing. This has to be his break. He deserves it.

Until next time,
Jaime

What is it? Gastritis? Ulcer? Who Knows?

I went to the doctor this morning because I was having a lot of pain yesterday. I had an appointment scheduled for wednesday but I couldn't wait any longer. I probably should have waited though. My doctor isn't there on monday so I had to see a PA. The guy was nice but didn't really get it. He told me to eliminate stress by getting up 30 minutes early and walking around the neighborhood. Now how am I supposed to do that with two kids at home? Anyway, he said that looking into the stomach was not necessary and to take prevacid instead of prilosec. I tried to explain how much pain I am in but he didn't think that it is a big deal because my bloodwork is "okay".

I don't know what to do. I am really starting to lose trust in doctors. I hurt so bad, and nothing makes me feel better. It hurts when I eat. It hurts when I don't eat. I doesn't matter what I eat, it still hurts, even toast hurts. I asked if there was something I could take for the pain and was told no.

And to top it off Rick is sick today. He was up in the middle of the night puking. He didn't go to work today. I think it was probably a small cholangitis attack. It has happened like this before and that has been the consensus as to what it is.

We looked at each other last night and couldn't help but laugh. We are quite the pair. And definitely our parenting is suffering. The poor girls are so neglected.

I did get the name of surgeon today and I left a message with his coordinator. So we shall if Rick is able to get in with this guy. Let's hope so, he is the surgeon that did my boss's back surgery. And he was told by other surgeons that they would not operate, but this guy would. So hopefully this will work out. Please join me in praying for guidance for this surgeon, that he will know that Rick really needs some relief.

Until next time,
Jaime

ANGRY doesn't even describe it!

Rick had the appointment with the surgeon this afternoon. And angry doesn't even begin to describe how we both feel tonight. This so called doctor was the rudest man we have ever dealt with in the medical field. I know surgeons are a different breed of doctor and tend to be more arrogant but this guy was so beyond being arrogant that he was outright rude. Even his nurse looked mortified by the way he was treating us. I should start out by saying that the nurse was very nice and genuinely seemed interested in all of Rick's health conditions. She did a thorough exam and noticed that Rick does not have any muscle control in his left toes. Not a good thing in my opinion or the nurses opinion. And considering that the leg pain has progressed to his right leg now I would venture a guess that he is not getting better, but in fact getting worse.

I bet you want to know what the "doctor" thought. Well his opinion was that Rick needed to suffer through a year of this, go through physical therapy and change his job before he would consider doing surgery. WHAT!!!! The physical therapy would mean that he could not continue doing the job he has been doing for 15 years. Um, no. And when Rick said "I have a lot of other medial stuff going on here" the doctor replied with basically "so what". He was not interested in looking at the big picture.

What made him so rude you may be thinking. Well let me tell ya. He walked in the room and did not even say hello, he just slumped down in his chair and put his foot up on his knee and crossed his arms. He asked where the pain was. Looked at the MRI for less than 30 seconds and did not ask about Rick's health. After we said that we didn't want to wait a year to get this resolved and asked why he had to wait, the doctor very rudely said that since we did not want to hear what he had to say and that we didn't agree with him that we could go somewhere else. And then proceeded to get up and leave the room without saying goodbye. The poor nurse seemed to not even know what to say at that point.

It took everything I had to not burst into tears right there. I can't believe that he would treat a patient with such disrespect. He didn't want anything to do with Rick. So now we are left to wait out the weekend before we can call the rheumatologist and ask for someone else. And I will also be calling the office manager and complaining about the treatment that my husband received. We will not be making the office visit co-pay to this guy. I will not pay someone to be so rude and condescending.

This experience just piles even more stress on me. I am so frustrated and angry tonight. I can't believe that a doctor would basically tell someone they have to continue to suffer because he hasn't suffered for quite long enough. Are you serious?!?! Progressive pain and numbness isn't enough? Because Rick is flexible due to hockey he has a better range of motion than me, and I am not injured. It is just how he is, that shouldn't make him ineligible for surgery. And the doctor didn't say he was ineligible, he just said he hasn't suffered enough.

Maybe by now you are wondering what type of surgery Rick is facing. Well according to this "doctor" he will need a disc replacement or spinal fusion. A simple discectomy is not going to fix the problem, it will actually make it worse because his disc is unstable. So with a year of physical therapy he might get better and not need surgery. But in the mean time he could get much worse and it is going to start interfering with everything else. This type of disc problem could lead to damaging the nerves that control bladder and bowel function. Um I am thinking that someone with Crohn's disease needs to be able to have bowel control. But that's just me. I mean I'm not a doctor or anything. It blows me away that he was not willing to look at the whole picture and see where this fits in.

I know I need to let it go. And I am trying. But it is so hard that with everything that Rick has to deal with physically he now has to deal with a condescending jack-a$$ of a surgeon. It takes so long to get an appointment with a surgeon that now we have to wait probably another couple weeks at least to find out what's next in this journey. I just want to scream!!! Please pray with me that Rick doesn't get any worse before we can get in to someone else. I can't take anymore of this!!

Until next time,
Jaime

15 Years

15 years ago today Rick asked me to be his girlfriend. I won't say where we were or what we were doing but I do remember it exactly. And yes we were dressed. Geesh people, get your minds out of the gutter.

I can't believe it has been 15 years. That is nearly half my life. I was 16 years old when we first started dating. However we did know each other in junior high. My best friend was going out with his best friend. Oh the junior high love.

Anyway, what a crazy ride it has been. I would have never guessed that in 15 years we would be facing the challenges that we are facing now. But we are closer now than we have ever been and that is a blessing.

Rick I love you so much. You are a wonderful man and I couldn't imagine my life without you. You amaze me with your strength and determination to not let any of this get you down. I only wish I could be so strong. I will always be by your side. You are the love of my life.

Love Always and Forever,

Jaime

Probiotics: Yay or Nay?

I asked the dietitians at my office what to do about the gastritis. One of them suggested trying probiotics. From what I have read about probiotics it is more for intestinal disorders. But my problem is not intestinal, it is actually my stomach. Or at least that is what the doctor thinks up to this point. So my question to all of my wonderful readers is: Do any of you have any experience with probiotics? If you do, please don't be embarrassed to leave a comment. I would really like some advice on this subject. I would like to avoid having to use a dietary supplement like Ensure or Boost. Because that is what one of the other dietitians suggested if it doesn't get any better.

Until next time,
Jaime

P.S. Today was a great day! I am proud to be an American. This is really a cool country when you stop and look at all the pomp and circumstance of inauguration day.

What to eat, what to eat

I don't know what to eat. I am still dealing with pain off and on during the day. I don't know if what I am eating plays a part in that or not. I have been very careful about what I eat. I am hungry because I haven't been eating very much. I think the pain is better because it isn't constant. Has anyone ever dealt with something like this before? Is there advice you can give me?

Tonight the girls are going to their Grandma's house to have a girls night with their cousin. I don't know what Rick and I are going to do. I actually don't have any ideas. I wanted to go to dinner at P.F. Changs but Rick doesn't think that would be a good idea considering my stomach pains. I want to do something besides sit on the couch. Oh well.

This is probably the most boring post of all time. I will most likely lose readers because of how boring this post is. I am so bored!

Until next time,
Jaime

It is now a physical pain

I am now the one with physical pain. Last night I was in a severe amount of pain. I have been having problems with indigestion and last night it turned into a stabbing pain. I almost had Rick bring me to the ER. But I waited it out and called my doctor this morning. She had me go in to the urgent care clinic next to her office. I called Rick at work and he went with me.

The doctor was concerned so he ordered blood work and sent me downtown for an ultrasound. The blood work was not a great experience. I was told not eat anything or drink anything and so I was poked three times in order to get a good vein. Two of the pokes were in the top of my hands. OUCH! So now my hands hurt, and the crook of my arm where they finally found a vein hiding is sore too.

I went downtown for the ultrasound. I was told to still not eat or drink anything in case I needed surgery. The lady that did the ultrasound was a real bitch! She would not let Rick in the room with me, in fact she basically slammed the door in his face. I asked to please have him come in the room because I didn't feel good and she very rudely said no. Now I know it is only an ultrasound, but on the other hand it was only an ultrasound. There should be no reason he can't be with me if I wanted him there. I was crying and shivering because I have been so cold. And then when I asked for a blanket she was very rude about it. I hope I never see her again!

Then we waited for more than 45 minutes for the doctor to call us with the results. We had to wait in the office because if I needed surgery they wanted me by the hospital. But the doctor said that the ultrasound looked good and the blood work was okay.

Apparently I have Gastritis. I will be starting prilosec and eating a bland diet to try and calm it down. Gastritis is an inflammation of the stomach lining, or something like that. You can click above to learn more. It can be brought on by stress. So I was told to avoid stress. How do you suppose I do that?

I was crying on the way downtown because I just don't understand why everything has to go wrong for us. I am very grateful that I am not in surgery right now. And I am very grateful that I was finally able to get something to drink. I ate too, but I really don't have an appetite. I will go back to work tomorrow. And hopefully the pharmacy will have my prescription soon so that I can start that. The doctor said that at least we ruled out all the bad stuff, like a bad gallbladder or a mass on my pancreas (yes that is what they were worried about). But that doesn't make the pain go away. So now I have to deal with this on top of everything else. Seems fair doesn't it?

I would really appreciate some prayers that I start to feel better very quickly. I just really don't feel good (in a whiny voice).

Until next time,
Jaime

Stress

I am starting to feel the physical pain of stress. Lately I have had indigestion after I eat. I was chatting with my BFF Jackie and she said it was probably stress. It probably is. What do I have to be stressed about? The likelihood of my 5 year old daughter having ADD/ADHD? The probable back surgery for Rick? Our financial situation? The uncertainty of Rick's health? I just have come to a point where it is all just so over whelming. I have trouble even deciding what to write on here and how to word it. I have no energy to deal with the Christmas tree that is still in my living room. It takes all that I have to roll myself out of bed in the morning. I just wish that I could snap my fingers and make it all go away. snap, snap, snap......

I finally, after almost a week, received a call back from the doctor's office that did Rick's injection. The coordinator said she spoke with the doctor and he said he thought another injection would do the trick but that he would have to deal with the after headache again. That contradicts what he said when Rick was laying on the table. He told us that he didn't think that it would work for Rick and asked if we had been to a surgeon yet. And two weeks later Rick is back to the same amount of pain he was in before the injection. But now he thinks one more time will do the trick. Kinda makes one wonder, doesn't it? We are very interested in what the surgeon will have to say next week. And if the surgeon thinks that surgery is not the way to go then Rick will try another injection.

For me it is so hard to think about what is going to happen next. I wish the appointment wasn't more than a week away. I have a tendency to live in my head. I don't know how else to explain it. But I am always thinking and wondering. I don't mean to do it, it is just always there. It is so hard to be the one watching and waiting.

The emotional toll that all of this takes weighs on me. I have a hard time focusing on the girls sometimes because I just want to spend time with Rick. That takes a toll on me too because then I feel guilty about not being a good enough mom. But I just want to spend time with my husband too. I enjoy being with him. Don't get me wrong, I enjoy being the girls too. I am with them so much more than I am with Rick. And I want to spend time with him too. I wish that others could understand how I feel.

Wow I sound really pathetic. I think it is time to go to bed.

Until next time,
Jaime

Not Me Monday

I can't believe it has been a couple weeks since I have done a Not Me! Monday. I have not been busy or anything. Hang on, here we go.

I did not spend hours cleaning out the girl's bedrooms. I am not crazy to think that those rooms are going to stay clean for more than a day. I am not delusional to think that having a clean room will make them want to keep it that way. Nope, not me.

I do not still have my Christmas tree up in the living room. I do not have boxes of my regular living room decorations still sitting in the dining room waiting to be put back where it belongs. I do not wish that the tree would just magically put itself away so I don't have to do it. Nope, not me.

I did not plot a way to get the girls out of the house saturday night so that I could spend some time with Rick. I did not figure out that if I separated the girls that it would be easier for the grandparents to agree to babysit. Nope, not me.

I did not jump up and down when I discovered that school was finally going to open. I did not joyfully get the backpacks together and set the clothes out for the first day back at school in three weeks. I did not thank God for melting the snow so that I didn't have to listen to the fighting anymore. Nope, not me.

I did not wonder if anyone still reads my blog. I am not so obsessed with looking for comments that I get disappointed when there are no comments after days. I am not so addicted to blogging that I started using Twitter. I am not pathetic at all. Nope, not me.

I did not forget to do the laundry all week and am now wondering what we are supposed to wear in the morning. I did not spend the past week fishing socks out of a laundry basket again because I didn't want to fold the socks. And I most definitely did not watch Rick carry laundry downstairs while I did a quiz on Facebook. Who would sit around while her husband, who isn't supposed to carry things, brought two loads of laundry down to the basement? Definitely not me.

Pretty please leave some not me's in the comments so that I don't feel so bad about the laundry situation. It is liberating to admit to the things I have not done the past week or so.

I hope you all have a great week.

Until next time,

Jaime

Disease Mentor

I hopped over to my friend Dawn's blog this evening and noticed that she was talking about being a "disease mentor". Guess who came up with the title of "disease mentor"? Any guesses yet? ME! I used this while having a wonderful conversation with Dawn this summer. You can check out her post here.

It is so nice to have someone to talk to that has been through this already. I am so grateful for the friends that I have met through blogging. It is so comforting to have others that really understand. The only people that honestly know what I am going through are the ones whose husbands also have the same or similar health problems. And yes, of course, we have supportive friends and family. But there is nothing like talking to someone that has been in my shoes, so to speak.

Thank you Dawn for being my disease mentor. And for spreading the word about how important it is to have someone that has been there. I don't know what I would do if I didn't have someone to ask questions. And I have a lot of questions.

And Thank you Erin for being there as well. Erin's husband Geoff is patiently waiting for a new liver. So the three of us are like three generations of liver disease. Dawn is the first generation since she has already gone through it. Erin is the second generation because she is in the middle of it. And I am the third generation because I am in the beginning of it. I know I am so cheezy!

I want everyone to know how much I appreciate your support and understanding. I know I have said it before but I really mean it.

Until next time,
Jaime

So much to say

So much to say, so much to say..... Oh wait, that's a Dave Matthews Band song. But I do have some stuff to go over. I don't even know where to start.

Yesterday my Step-Dad's Mom passed away. That makes her my Step-Grandma I guess. The girls really loved her. Samantha was really upset about it last night. And Megan is still at that age where she doesn't completely understand. Grandma Cris was such a sweet lady. She would hold your hand if you were sitting by her. And she loved to see the little kids. The last time I saw her was on Thanksgiving at my Mom's house. She suffered a stroke just after Thanksgiving. The funeral is on Monday.

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We got the results from Rick's colonoscopy. The polyp is benign and would not develop into cancer. And the biopsies were consistent with Crohn's disease. So that is a good thing. About time we got some good news. I really wasn't expecting it to be anything, and I honestly wasn't even thinking about it. About time, right?

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The epidural injection did not make much of a difference. Rick said that maybe he has seen a 25% improvement overall. That isn't much. We are skeptical about doing another injection considering it didn't work well, and he got that horrible headache. So we have decided to meet with a surgeon. That appointment is scheduled for January 23rd. Part of me really wants Rick to have the surgery because it is the one thing that can be fixed. I want him to be able to do the things he wants to do without worrying about making the pain worse, or causing more damage. There isn't a way to fix his other health problems but this is the one thing we can have control over. Does that make sense?

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Megan had a doctor appointment today. As some of you may know, we have been having some big behavioral problems with her. So her teacher, and us, decided that it would be a good idea to talk with the doctor about it. The doctor thinks that she may have ADHD. Rick says "now days there is a label for everything." But having an idea of what the root of her behavior problems are will help with discipline and how to deal with some of the other issues. We are NOT using medications to treat her! She is only 5 years old and more than likely will grow out of it. For now we are going to fill out a questionnaire and have the teacher fill one out as well. That will help us in scoring where she is at and give us a starting point. I am actually happy that we know what is going on because now we can do something about it. Does ADHD run in the family?

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The big melt down has begun. We are down to only a couple inches of snow in the front yard now. It has gotten warm and rainy, and so the snow is flooding away. School finally started again today. Yippee!!!

I know that is a lot of information in one post. I would love to answer any questions, from anyone. Or maybe someone has some advice on the back surgery thing. Comments and thoughts are appreciated.

Until next time,
Jaime

Pain sucks!!

I am in pain tonight. I feel like a baby complaining to Rick, but it really does hurt. In the back of my mouth, by a tooth, is where the pain is. It is really painful and I don't know what caused it. It hurts to talk and anytime I move my jaw or tongue I am reminded of the pain. I am thirsty but it hurts so bad to drink anything that I don't want to. I know, I know. Pity party time. (little violins playing in the background) But it really does hurt.

I am going to bed now and hopefully sleep through the pain. No school again for the girls. That is a pain I can not sleep through. Oh please hurry up and shovel off those roofs. I need some quiet time.

Until next time,
Jaime

An extended winter vacation

The Sheriff has exercised his power and has closed all schools in our county for at least the next 24 hours. There is another winter storm coming in tonight that is supposed to dump up to another 8 inches of snow. And the sidewalks are buried under lots of snow that was plowed up into huge snow berms. There is not really any safe way for kids to walk to school, not to mention how bad the parking lots are at the schools. And there has been lots of roof collapses from all the snow, so they need to be sure the schools are safe as well.

I was really looking forward to kicking the girls out in the morning, but now we have yet another snow day. Last year school was closed for three days because a foot of snow fell in a day. That was the first time school had been closed in 11 years. And now we have had more than 71 inches of snow fall since December 16th. It has already been a recording breaking winter. How many more snow days are there going to be?

It is pretty, but enough is enough. I need the girls to go back to school. They need to get out of the house. I need them to get out of the house. Family time is great and all, but we have been together for a long time now.

Until next time,
Jaime

2008: A Year in Review

So I decided that maybe it would be a good idea to look back on 2008 with a different perspective. If you don't know what I mean check the post before this one. I made this digital scrapbook looking back on the year. After you click play, you can click on each of the smaller pictures and it will move it to the bigger box and show the journaling for that specific photo. I hope you like it.

Until next time,

Jaime

Happy New Year! Bring it on 2009

Yes that is the girls awake at midnight. Sam insisted on watching the ball drop. And they enjoyed watching the fireworks that we could see going off all around the house. We even had a couple to light off as well.

So it is officially a new year. Doesn't feel any different. Nothing changed. Rick is still the same. Our financial situation is still the same. Our medical insurance deductible and out-of-pocket started over.

The bright side? I don't know. Do you?

Until next time,

Jaime