Dr. S Day

By now you all know how much we LOVE Dr. S. I am so grateful to that man for taking such good care of Rick. If it wasn't for him I am certain that Rick would still be in a lot of pain.

We got to go visit with Dr. S this morning. Rick had the usual x-rays taken, sans paper pants :( , and we got to visit with the PA we saw before the surgery. He was very happy that Rick was doing so good. It was nice of him to stop by and talk with us. He remembered us and made the effort to see how everything was going.

Dr. S said that Rick's fusion is starting to really look good. He is growing even more bone and it is getting more solid all the time. That is such good news. We are so thankful that this has worked out so well. It is going so well that Rick doesn't have to see Dr. S again for six months. That is a good thing, but also a sad thing. I will miss him! He has been so wonderful!! He is the one doctor that we both really look forward to seeing.

It is so reassuring to know that we did choose the correct surgery. We knew that this was going to be the bigger surgery and that there was some risk involved, but it was not an easy decision to make. Rick wanted to smaller surgery, the rest of us thought that the bigger surgery was the way to go. I am so glad that we went with the bigger surgery. Dr. S said that this was definitely the right decision. Rick has no leg pain or numbness, and minimal back pain compared to what he had before. Of course the arthritis causes him back pain as well, but this made such a big difference for him.

So this should be about the last time you hear about this back thing until his next appointment, six whole months from now.

Until next time,
Jaime

It's A Tie!

We have decided that we have a tie for first place for Rick's best doctor. Dr. S (the surgeon) and Dr. C (the rheumatologist) have tied for best doctor!!

Rick had an appointment last week with Dr. C (yes I know this post is a few days late). Rick has some swelling of his joints and so it seems that the joint disease (spondyloarthropathy) is acting up a little bit. But with going back to work it isn't surprising. If things don't regulate themselves we will look into starting a different drug therapy to control the joint disease. There are a couple new drugs that have just been approved by the FDA. So at least there are some options.

Dr. C wasn't really surprised by the fact that the spinal fusion hadn't taken yet. He agreed with Dr. S that it is most likely due to all of Rick's disease processes. He did say, very adamantly, that he knew that Rick needed this surgery and that he never would have gotten better on his own. That is why he put himself out there and personally called Dr. S. In that phone conversation he made it very clear how important it was that Rick have surgery. And Dr. S was obviously very supportive and completely understood the reason that it needed to be done. And so the two of them worked together and made it the great experience that it was.

Dr. S had joked with us about wanting us to tell Dr. C to send more patients his way since we had such a good experience with him. So we actually did. And Dr. C said he had already sent a couple patients to Dr. S because of how willing he was to work with Rick, and because he knew how well things had gone. So because of us Dr. S got more patients and some patients got a fantastic surgeon.

We are definitely blessed to have two wonderful doctors looking out for Rick's best interest!!! And even Dr. C's nurse is wonderful. She was very excited to see us and really wanted to know how things are going. Don't get me wrong, he does have other doctors, and they are good too. But these two are exceptional!!

Until next time,
Jaime

Exceptional

Exceptional- beyond what is ordinary or usual; highly unusual or exceptional or remarkable; well above average; extraordinary.

I have been wanting to write this post but I have had trouble coming up with the best words. I have always thought that Rick was strong, but the surgeon (Dr. S) caught me a little off guard with his words regarding Rick the day after surgery.

Dr. S has a personal experience with crohn's disease. He has crohn's and has been to The Mayo Clinic for treatment of his crohn's. Dr. S said that Rick is exceptional. I, of course, think that myself. But it was so amazing to hear the surgeon talk about my husband that way. He said that a lot of people in Rick's situation would just give up. That they would be living under a bridge somewhere wallowing in self pity. But Rick's ability to fight everything that has happened to him is exceptional. He continues to work very hard to provide for our family. He doesn't complain, he does what needs to be done. He takes his handful of pills every four hours without complaint. He goes through numerous procedures, sometimes with very painful side effects (remember pancreatitis?!?!). And I never hear him complain. He endures major surgery that will be life changing and doesn't even fret about it. I really do agree with Dr. S, Rick is exceptional.

Dr. S went on to talk about how our daughters are very lucky to have Rick as their role model. They have someone to look up to that works hard no matter what. That doesn't give up. Of course they are too young to understand this now, but they see it everyday and it will rub off on them. In time they will understand and appreciate their Daddy even more. It was very touching to hear those words spoken about my husband.

How amazing is it to have a surgeon that thinks so highly of his patient. Dr. S said that the main reason he agreed to do the surgery was because he knew how hard Rick would work on his physical therapy. He knew Rick would follow the rules and do exactly what needs to be done. And the physical therapist that worked with him at the hospital agreed. He called Rick a model patient. I am just so proud of him.

I do think that being exceptional also makes him bored. He isn't used to just taking it easy and doing nothing so he is very bored. I have to remind him that taking it easy and resting is how the body heals. He knows, and he has been following the rules. But nevertheless, he is bored.

I am so lucky to have Rick in my life. Of course this isn't what I had imagined our life to be, but I wouldn't change a thing because I don't think we would have ever been this close otherwise. We have a very special bond that is formed from fighting this together. Not separately, but together.

Until next time,
Jaime

9 out of 10

When I normally ask Rick how he is feeling he usually says something like "alright" or "fine" but these past few days I know he has not been "alright or fine." I found out that his Crohn's is acting up a little bit. And at the doctor's office yesterday when the doctor pressed on his right side it hurt. So I am guessing that the liver is not a happy camper right now. I could tell that today his back was really bothering him. I asked him on a scale of 1 to 10 what his pain was today. He said in the mid 9's. For someone who normally says he is "alright" I know he must really be in pain. I don't know what to do. So I think I am just going to wait it out.

We have been contacted by the coordinator for a different surgeon. Rick went over all his problems and she is going to discuss it with the surgeon and then get back to us. I don't know if I should contact them to let them know how bad his pain is getting or if I should just wait til they call back. I don't want to seem too anxious about all of this, but I am.

What we found comforting and interesting was how concerned and "on top" of things the rheumatologist was yesterday. He was very concerned when he found out that Rick is actually doing worse. Apparently the back is so bad on his body that it is causing the joint disease to flare up and is probably the reason for the flare in the Crohn's as well. It could possibly have something to do with the PSC acting up as well. But that is not for certain. The doctor had originally, back in November, said not to have surgery. But now he is saying that Rick definitely needs surgery because this is affecting his other disease processes that can be life threatening. He also gave us some good advice on what kind of surgery options to choose from.

I am reeling at this point. It has been a long 3 months since Rick's back pain started. And a really long past 12 months. To think about how much he is suffering with now is heartbreaking. I just can't believe all of this is happening to him. I just have to pray and believe that God has a hand in this and will be there for us. I just don't know how much more I can take. I don't know how much more Rick can take. He is so strong, but I know there is a breaking point. He is so amazing; still working and teaching. Most people have no idea how much pain he is in because he can just push through the pain and go on with his day. If only they knew the truth. If only.

I would really appreciate prayers for Rick. He really needs a break. His body really needs a break. I am really worried about his health right now. We also need prayers that this surgeon will realize how badly Rick needs this surgery and will operate ASAP.

Until next time,
Jaime

Doctor says...

I think I am going to start a new game. Instead of Simon Says it is going to be Doctor Says. And so the Doctor Says get an MRI. That is scheduled for saturday. I didn't know Inland Imaging was open on saturdays but apparently they are. The thinking is that the back pain and leg numbness is due to a herniated disc in his lower lumbar spine. An MRI will give a clear picture and let us know if this really is the case.

His pain today was pretty bad. It looks like this will be the case for a while if it is a herniated disc.

Thats where we stand tonight.

Until next time,
Jaime

Doctor appointment time again

It's funny how suddenly there seems to be appointments galore. Today Rick had an appointment with his gastroenterologist. This was just a normal check up. But today also included scheduling a colonoscopy. Yup, it's about that time. And as much fun as it sounds it really does need to be done. It has been four years and since there isn't a lot of data to show progress of Crohn's disease combined with PSC, we felt it was time to check on things. Rick has only had 2 ERCP's this year so we might as well go for that third procedure. Thank God for medical insurance.

In the morning Rick has an appointment with his rheumatologist about the back pain and leg numbness. It sounds like they want an MRI done. We are really hoping they will be able to find someone with an opening for an MRI so he doesn't have to wait any longer to find out what the problem is and hopefully do something about it. It could be a number of things but because his arthritis affects his spine it is a good idea to check stuff out.

That is where we are at right now. Please keep Rick in your prayers as he pushes through the pain and continues to work.

Until next time,
Jaime

Hurtin part 2

I finally got a call back from the doctor's office around 3 this afternoon. The doctor is especially concerned about the numbness in the legs. Unfortunately they are "uber booked" according to the nurse and he can't get in until wednesday. And after the appointment they want an MRI, but they won't schedule it or have it done until after the appointment. So Rick will have to suffer through a few more days. He can't take ibuprofen because of the crohn's and tylenol doesn't help. It looks like Rick will be sitting on the heating pad for a few more days until we get this figured out.

I feel really bad for him. It sucks to have to watch him suffer. I wish there was something I could do for him. Just when something good happens, something bad has to happen to remind me that it isn't all good.

Until next time,
Jaime

Hurtin *(Updated)

*I have left a message at the doctor's office and have still not heard back. I would think that having your leg be numb from the pain is not a good thing and I was hoping to hear back before I went to work. I will probably be calling again since it has been over 3 hours since I left the first message.


Rick is hurtin. That is what he put on his myspace page. And it is very true tonight. It started yesterday and has been getting worse. I believe it has something to do with the arthritis. The pain is in his lower back and he said that when he woke up his leg was numb. So I am thinking that I will be making a call to the rheumatologist in the morning. I feel really bad for him. He is still going to work but when he is at home he is popping the tylenol, sitting on the heating pad, and loading up on IcyHot. I hate the smell of that stuff!!

I will update more on how he is feeling and what the doctor has to say. So if you could please just keep him in your prayers that this gets resolved quickly.

And while your praying if you could also say a prayer for our fellow liver friend Geoff who is still number one on the transplant list and anxiously waiting for the call.

Until next time,
Jaime

And a great glove save......

I actually got to go watch Rick play hockey tonight. I used to go all the time (when he played all the time), but now it isn't as easy to go watch him play. He doesn't get a chance to play very often anymore either. The arthritis (spondyloarthropathy) has slowed him down a little bit, but he can still play. He says that it is time to put him down when he can't play anymore. LOL.

Photo and video editing at www.OneTrueMedia.com

I know the pictures aren't that great. It is hard to get pictures in the rink because of the glass and the netting. And I didn't want the flash going off so I had to try to program the camera a little differently. That is just something I am going to have to play around with.

And now for a shameless bragging moment. My husband plays hockey with Mark Rypien. You know THE Mark Rypien. Super Bowl MVP Mark Rypien. He knows my phone number and calls my house. You know you are cool when the phone rings and your caller id says Mark Rypien. LOL. Mark is a great guy and his foundation, The Rypien Foundation, does great things for our local cancer kids. That is also the name of his hockey team. Yes Mark Rypien now plays hockey.

I had a nice time watching Rick play. They won like 8-2 or something like that. I am glad they won, because when Rick loses he gets very pissy.

Until next time,

Jaime

Migraine Pain

Last night Rick had a terrible night. He had such a bad migraine that he hardly sleep and when he did sleep it was only while sitting up. You know its bad when a dilaudid doesn't even do the trick. I get migraines sometimes, but I can't even imagine what that is like for him. To have to sleep sitting up and with the heating pad on your head must be extremely painful. Just another reminder that everything isn't okay. Thanks Mom for saying he was looking good, you jinxed him.

Luckily now today it is better and he was able to go teach the drummers. This afternoon Rick has the appointment with the hematologist. We should know more later this afternoon. I have to admit that I am very nervous about this appointment.

I will post when I can later tonight.

Until then,
Jaime

But you look fine

If I hear one more person say "but he looks fine" I'm going to scream. I was very proud of Rick the other day when he had to have a conversation with two people that don't understand and kept saying that he looked fine. He kept his composure and just nodded along, all the while just wishing they would stop.

We have been very lucky that our immediate family has an understanding of what Rick's health conditions do to him. And I know there are others out there that understand as well. But for the few that pretend like they do, but really don't, that is where it gets difficult. I can always tell when someone is pretending to "get it" and are just going along with the conversation. That is probably the most hurtful thing to me. Just because he may not appear to be sick, does not mean he is fine. I mean, do you really think we would go to all the trouble of going to Mayo if he was fine?

Rick is really good at hiding how he is really feeling. There are many times that even I don't know how he really feels. Just about two weeks ago he had a migraine and still went to a family dinner. Nobody there even knew he had a migraine. Now I don't know about anyone else but when I have a migraine I can hardly function. He gets up every morning and goes to work no matter how he feels. And when he is there I know he tells everyone that he is fine even when he is not. I could tell stories about how sick he has been at work before, but I won't. The thing about having crohn's and PSC is that you can't see it. It is not visible to the naked eye. He has always been skinny, so he doesn't really look any different. If you were to look into his eyes you would notice that they are yellow, but other than that there are no outward signs. And that is why I think some people think he is fine.

Rick doesn't want anyone feeling sorry for him and making a fuss over him. And I don't blame him for that. He wants to just live like everyone else. But sometimes it can get hard to deal with the stupid people that don't understand.

I have been attending church recently and have always been a believer. I pray everyday and pray with the kids as well. But to have someone suggest that by praying enough it will heal itself is just ludicrous. That by following a certain diet and avoiding certain things, that it will all just go away is beyond me. If that was true there would be no cancer, no death. I do believe that by praying and following a healthy lifestyle it will improve life, and help stabilize the disease. But to say to someone with a chronic illness that if they just close their eyes and pray it will all just go away is so hard for me to deal with. I mean don't you think I have tried that already? My grandma tells me that she prays for Rick every night. So do I. But that won't make this all go away. It does however, make it easier for me.

The girls learn bible verses in Sunday School every week. One week the verse hit home to me and I have kept it memorized and say it all the time. It is a children's version of it, so it is simplified. Don't worry about anything, but pray about everything. With thankful hearts offer up your prayers and requests to God. Phillipians 4:6. I found the long version and have that written down and look at it often. It just spoke to me and I feel it helps me when I catch myself very anxious about all of this.

I hope I haven't offended anyone with this post. That was not my intention. Rick and I just had a long conversation tonight about this. He was telling me about the other day when he had to listen to the two people give him advice on how to heal himself, and how that made him feel. I am certain that they meant well, but it was still hurtful. I do have to trust that God is in control of all of this and that He will guide us in the right direction. And I know it will all work out the way it is supposed to in the end. It just makes it hard to hear "but he looks fine."

Until next time,
Jaime

The healthy one

It's not easy being the healthy one. Sometimes I feel so much guilt for having a bad day when I know that Rick has bad days all the time. If I am having a back ache or headache, I always feel badly when I complain about it in front of Rick. His joints and back hurt him most of the time and unless you know about it, like I do, most people would never know. He can get terrible headaches that land him in bed or in the shower to try to get relief, and then I complain when I have a headache. How is that fair? He goes about his business and very rarely complains. If he complains I know he is really hurting.

When the kids have been crazy all day and I have about had it, I feel bad when I have to ask him to help. I don't want to have to interrupt his nap, or bother him to help me. I know that probably sounds silly, but I feel like I should be able to handle every situation because I am the healthy one. He works ridiculously hard every day, and I just have to take care of things around the house. So there is some degree of guilt on my part when I have to ask for his help. He never asks for help because he is sick, so I feel like I should be able to handle things because I am the healthy one.

I am sure that all sounds so pathetic, but those are the things that bother me.

I am not always very good at coping with Rick's diseases. It has taken me awhile to come to terms with everything, and I am still struggling with it all. At first I felt overwhelmed with what Rick would have to deal with. With the Crohn's diagnosis it was actually a relief at first because he was so sick I thought he probably had cancer. He was very sick and had lost an enormous amount of weight. I had been doing research before the diagnosis and from what I had read on the internet I figured it was cancer, but I had also seen what Crohn's disease was as well. So when the doctor said that he was really sick and that it was Crohn's disease I was actually relieved. I knew that Crohn's was treatable and liveable, granted it can also be painful and hard to control at times. But I knew that it was not something that was going to take him from me. After getting that under control life seemed to get back to normal.

About a year and a half later Rick started having severe pain in his joints and he was finding it more and more difficult to walk and get around. When he couldn't get out of the shower on his own it was time to go to the emergency room. That is where we discovered that he had an auto immune arthritis called Spondyloarthopathy. I was so worried about him, I definitely did not like seeing him in so much pain. That was hard to watch and I will probably not forget the pain on his face. How can I possibly complain about my back hurting when he has gone through something like that? Like I said, it is not easy being the healthy one.

Now the diagnosis of PSC was not something I was prepared for. Sure I knew what it was. I had done all the research on crohns and knew there was a liver disease that only like 1% of crohn's patients got. Of course I didn't look too far into it because I thought that there would be no way Rick would get that. I was crushed when the doctor thought that the high liver panel indicated that Rick had PSC. I went home and looked it up on the internet. I couldn't believe my eyes when I saw that most patients will require a liver transplant and that it was considered terminal. OMG!! How could my husband have something terminal?!?!?!

Waiting for him in the hospital waiting room while he was undergoing the procedure to determine if he did in fact have PSC was probably the hardest time of my life. I very vividly remember sitting on that chair and looking at the clock over and over again. I remember thinking that the procedure should have already ended and then still waiting another hour after that. I remember the doctor coming into the waiting room and pulling me into the recovery area to tell me that it was PSC. I remember standing by Rick who was laying in the bed sleeping away, and putting my hand on his foot while the doctor talked about the PSC. I knew too much about the disease and inside it felt like my heart was breaking. I wanted so badly to be able to cry but I wasn't going to do that in front of the doctor, or at the hospital for that matter.

I have cried many times since then. I have cried for the third child I had wanted to have. I have cried for the future that is now so uncertain. I have cried just because I don't understand why my husband. I have tried to be strong and not show how much it bothers me sometimes. And other times I just feel like my stomach is in knots. I am one of those people that like to plan ahead and know what is going to happen. I don't like not knowing what the future holds for Rick. I have a hard time coping with being the wife of a PSCer (as they are called in the PSC support group). When we were first married I never imagined that this is where we would be right now. Like I said before, I think it is hard to be the healthy one. I am the one that has to watch all this happen to my husband. I am the one that has to stick a needle in his arm. I am the one that has to wait in the waiting room dreading what the doctor is going to say.

And of course I feel guilty for feeling this way because he is the one that has to go through all of this. Rick is the one in pain. Rick is the one that has to take so many pills everyday. Rick is the one that has to endure the tests. I am just the one that has to watch.

Pills, pills, more pills, and a needle

When I put together Rick's pills for the week I am amazed at the number of pills he has to take per day. Most people are blown away when they see his gigantic pill box full of his pills for the week.
When Rick first started taking his pills he would take only one or two at a time. So it would take a while to take a handful of pills. Nowadays he pops the entire handful in his mouth at once. I used to laugh at him when he would take his time to take one at a time. Now I call him my rockstar.

Currently he is taking 26 pills a day. Sometimes it is more depending on if he needs an antibiotic or steroids. He has to take calcium and vitamin supplements because the PSC and Crohns make it harder to absorb all the daily nutrition.

And then there is the weekly shot. Now this is my responsibility once a week. I have never been very good with needles and other "medical" things. But with Rick it doesn't bother me at all. I was taught in less than five minutes how to administer his weekly injection. Don't people go to school to learn how to do this? I mean really, shouldn't I have had a little more training before being expected to shove a needle into my husband's arm? I have been doing this for almost two years now and I still get nervous about hurting him. Rick has told me that getting this shot is very painful. Not from the needle but from the medicine. It apparently burns really bad, so I have to go very slowly so that it isn't as painful. Rick only wants me administering his shot because I know how slow to go. When he had his very first injection the person doing it did it very fast and he about came out of his skin. So ever since then he won't let anyone else do it. I guess he really does need me.

So until next time,

Jaime