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
Tuesday, January 27, 2009
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
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
Monday, January 26, 2009
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
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
Friday, January 23, 2009
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
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
Thursday, January 22, 2009
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
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Us
Tuesday, January 20, 2009
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.
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.
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Jaime
Sunday, January 18, 2009
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
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
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Jaime
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