You Can Help Make A Difference

I have become passionate about getting the word out about Crohn's and PSC. The only thing I can do to not let these diseases win is fight for a cure. So I have found a couple things from my friend Brandee that I want to pass on to all of my readers in the hopes that you all will help me out.

The Crohn's and Colitis Foundation has a couple things going on right now. The first is a letter writing campaign to local legislators about supporting funding for the new IBD Legislation, The Inflammatory Bowel Disease Research and Awareness Act. By clicking here you can send an email to your local legislators urging them to support the bill. You can include a personal story if you have one, or feel free to use Rick's story. It only takes a minute, but it could make a big difference for those suffering with IBD.

The second is the virtual IBD March on the Hill. Shire plc has agreed to donate up to $30,000 for IBD research. By joining the virtual walk Shire plc will donate $1 for every step you take. You can log on everyday and take a step. At the moment there are less than 3,000 steps taken, the goal is 30,000. Please join in the walk and support those with IBD.

These are two very easy things you can do to help make a very big difference. And I have one other thing I am saving for it's very own post. It is the biggest thing I have done and I am very excited about it, so stayed tuned!

Until next time,
Jaime

Take Me Out To The Ball Game

If you didn't know (and you probably didn't because why would you?) Pearl Jam guitarist Mike McCready is a spokesman for the CCFA (Crohn's and Colitis Foundation of America). He has been lobbying for the state of Washington to pass legislation that would make it law to allow people with Inflammatory Bowel Disease (Crohns or Ulcerative Colitis) access to private bathrooms in businesses that do not allow for public bathroom use. Some are arguing that it is unfair. I say they must not know what it is like to live with a chronic illness. You can find the article about this legislation by clicking here.

Mike McCready isn't stopping there. He is playing the National Anthem before the Seattle Mariners home game on May 19th which is CCFA night at Safeco Field. $7 from each ticket purchased here will go to the Crohn's and Colitis Foundation of America. If we lived closer and it was on a weekend we would definitely be going to the game. But for any of my readers that live in the area we hope that you will consider going to the game and supporting this foundation.

I think it is great to see IBD getting so much attention here in Washington State. And there is even a free informational seminar about IBD next week here in our city. One of the doctors from Rick's doctors office is speaking at the seminar. We are planning on attending. I like to try to be as informed as possible. Sometimes that probably isn't in my best interest, but well, I'm OCD about this stuff.

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

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

Goodbye 2008, Good Riddance

This has been one of those years that I am not sad to see go. It seems like the last couple years have been that way. And on each New Years Eve when the clock strikes midnight I think that the new year just has to be better. I don't know if I can even think about that tonight. Because for some reason I just have a feeling that it isn't going to get any easier.


2008 was filled with lots of bad things, but also some good things. Like:


The Good:
I was blessed with a great job
My beautiful niece Mady entered the world
We were supported by family and friends
The Mayo Clinic
Adding Jack to our family
"Meeting" some new friends
My blog (in my opinion)
Having a snow blower

To tell you the truth, I am having a hard time coming up with the good things. I even asked Rick and he just shook his head.

The Bad:
Samantha broke her arm
I HAD to go back to work
Rick's PSC progressed
Rick had 2 ERCP's
Rick had an ERCP that had some complications
Had to go to Mayo
Rick now has yellow eyes
Because of Gilbert's Syndrome
Worry about the possibility of new diseases, that were eventually ruled out
Testing Rick for lymphoma
Rick had a colonoscopy
Rick has a herniated disc
Rick had to have an epidural steroid injection
The injection didn't go as planned
Nothing really went as planned
Rick's migraines
I started seeing a therapist but had to stop because it was too expensive
Bills, bills, and more medical bills
A dishwasher that keeps breaking
Megan's behavior problems
People that don't get it

I could probably go on but it is getting depressing. And the finale to our great year (can you sense the sarcasm), Rick had a epidural headache all day. The doctor thinks it is a reaction to the dye used and the steroid leaking out of the spine. We were told to keep a watch out for worsening (is that a word) symptoms and if it gets worse to go to the ER. We spent New Years there two years ago, I am not doing that again.

So I think that probably sums up our year. I am having a bad night. I was really worried about Rick while I was at work. And the stress of it all is just coming to a boiling point for me.

But I do want to wish everyone a Happy New Year. I really do hope that 2009 brings joy and good health. Even if I do sound pessimistic tonight.

Until next time,
Jaime

Procedures suck!

Basically I HATE hospitals and doctor offices now. Since Rick was diagnosed I have developed a big anxiety over having to go to appointments and procedures. Even "routine" things like appointments or colonoscopies cause me great anxiety now. Anxiety issues run in my family so it was bound to hit me.

We are finally home tonight after the colonoscopy. The doctor didn't talk to us afterwards, which must be a good thing, so I don't really have any news. They did take some biopsies and removed a polyp, but that is all I know. Right now Rick is asleep on the couch next to me after a very LONG couple of days. The prep for a colonoscopy can be rough on a crohn's patient, and Rick was no exception. We did talk about that when we arrived and they wonder if maybe Rick has a bit of a gastric emptying problem. But it is apparently not a big deal because they weren't concerned. So now I must move on from this procedure to the next. Next thursday is the big epidural steroid injection. Just another thing to cause more anxiety over.

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I am sitting on my couch curled up with a blanket and my sweats on. The Christmas tree is lit up and the Christmas music is playing quietly in the background. The smell of my holiday wreath candle is drifting through the air. I must get into the Christmas spirit. If not for myself, for my kids. But it is just so hard when things just keep happening. It is hard to look back on this year with much excitement. It really has been a tough year. Probably the toughest financially we have had so far.

I am going to rest tonight and tomorrow will be a new day with fresh snow on the ground. I will pick up the girls from my mom's house and have a good day with them. I will try to put the anxiety of the past two days behind me and enjoy their Christmas excitement. Maybe we will do a Christmas project. Maybe we will play in the snow. But I will not worry about next week, I will focus on them. After all, Christmas only comes once a year.

Until next time,
Jaime

Nurse Jaime *UPDATED*

Rick is having a rough time. Please pray for strength for him to handle this. I know it is common and people do it everyday, but still, it is really not easy on him.


I am home from work early to take care of Rick. He has his colonoscopy tomorrow so you can use your imagination to figure out how he his feeling tonight. Just keep us in your thoughts tomorrow for a uneventful procedure.

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

Rickologist

A good friend of mine called me a Rickologist. I love it!! "Ologist" means the study of. So I am in the study of Rick. LOL!!!

So we have added another "ologist" to the list of doctors. Rick has an appointment with a hematologist on August 21. His bloodwork from last week was all screwed up still and his rheumatologist is very concerned. So Rick was referred to what his rheumatologist calls the best hematologist in Spokane.

I have been googling some of the bloodwork results and I think Google can be worst enemy. But I want to know what all of the different values mean. It is interesting to find out all of the different cells that make up the white blood cells and red blood cells. And what they are supposed to be doing.

So I have a big concern. Rick's gastroenterologist is not concerned about the bloodwork and says that monthly bloodwork is all that is needed. The rheumatologist and his new internist are both concerned about the bloodwork and thought that a hematologist was needed. I would think that the GI would be concerned considering the Crohn's and PSC. And then the GI doesn't want to do a colonoscopy but the internist and Dr Lindor (Mayo) both think it should be done. Now the GI would get paid for doing the colonoscopy so one would think that he would do it. I am starting to wonder if maybe he is not the right doctor for Rick. I would hate to change the GI because there are so many factors in Rick's health. But I want to make sure that the doctor is going to take everything seriously and double check just to make sure that all is okay. Am I overreacting? Shouldn't his GI doctor be as concerned as the rest of them?

*****FYI: It has been 4 years since Rick's last (and first) colonoscopy. That is why we think it has been long enough.*****

So we know that Rick is still immune compromised, more than he usually is. So he still has to be very careful to stay healthy. He even pointed out that not all public bathrooms have garbage cans by the door so when he uses a paper towel to open the door there is nowhere to throw it away. I couldn't be more proud!!!

And on a side note, where is the love people? Are you still reading? We haven't had a lot of comments lately. Not that I am begging for comments but a little love never hurt anyone. LOL

Until next time,
Jaime

New Doc is AWESOME!!

Yesterday Rick and I met with his new primary care physician. Dr Yates is an internal medicine doctor that is a much more specialized primary care doctor that completely understands the entire picture of Rick's health. He was so AWESOME! We were both very impressed with him and his nurse. We have seen so many doctors that we know when a doctor is going to "get it". And Dr Yates definitely "gets it"! He was very impressed with our knowledge of Rick's health and he talked with us for more than 45 minutes. The funniest part was that both the nurse and doctor both told us, at separate times, not to be afraid of all the old people in the waiting room. The nurse said she really likes to see young people. Since an internist usually sees people with lots of medical conditions that means that the majority of the patients are older. Lucky us. Dr Yates said he was baffled by the missing spleen as well, but because the ultrasound showed blood flow through the splenic vein there must be a spleen in there somewhere. He also suggested that Rick get another colonoscopy sooner rather than later so we will be bringing that up with the GI doc Dr Houglum.

Lucky Rick also got to have a tetanus shot and pneumonia vaccine. Since he is immune compromised the doctor thought it was a good idea to get the pneumonia vaccine. He also suggested that at some point in the near future Rick should have a bone density scan because Crohn's disease can deplete the calcium in the body. And the use of prednisone, although not all the time, can also cause a depletion of bones. So that was a new suggestion that we hadn't heard before, but I think it is a good idea.

So Dr Yates said that he wants to be kept in the loop concerning anything the other doctor's order. So he will be cc'd all the blood work and doctor visits. And if anything shows up that he thinks is suspicious, even if he isn't the one that ordered it, he will call to make sure the other doctor's caught it. I think that is great to have someone else double checking everything. It is nice to have a doctor so interested in the case.

He is very aware of the gravity (his word) of the PSC diagnosis and doesn't want to take anything lightly. He was very impressed that we went to the Mayo Clinic. And he was very interested in what Dr Lindor at Mayo had found.

So after that appointment Rick had his blood work done to check the low counts and we have yet to hear from that doctor. So as soon as anything comes back on that I will let you know.

Thanks for following this journey with us. I know it sounds overwhelming and I am very grateful for those of you that are still interested in reading all of this. It has been a great outlet for me.

Until next time,
Jaime

6 a.m. Phone Call

I knew staying up late reading last night would be a bad idea. I just knew the phone would ring at the butt-crack of dawn. But since I am so super awesome I was totally able to be coherent at 6 am. So I had a nice long talk with Dr Lindor this morning. NO WILSON DISEASE!!!!! Can you tell I am happy about that?!?!?! That was what I was most scared of. So the high iron and low ceruloplasmin (too much copper) in the blood is caused from an inflammatory process going on inside the liver. That will happen with PSC. And the medication that Rick takes for the PSC actually tends to mask the actual liver enzyme panel numbers so it can be hard to tell how the liver is doing by bloodwork alone. The bilirubin is going to cause problems because of the Gilbert's syndrome, so that is number that will fluctuate. We just have to make sure that if we notice Rick's eyes get a lot more yellow or his skin start to turn yellow then we know it is the PSC and to call the doctor.

Rick will continue to have liver pain off and on. And I have had it described to me as if someone is taking a pair of pliers and grabbing and twisting the liver. That doesn't sound nice to me. So as far as what the stage the PSC is actually in can only be confirmed by a liver biopsy which Dr Lindor thinks is unnecessary at this point. So the plan is to monitor the blood work at four month intervals and return to Mayo once a year for a full evaluation. Dr Lindor thinks it is important to check everything out to make sure that there is no cancer forming, since that can happen with PSC. So Rick would go back to Mayo for an ultrasound and bloodwork, and those would tell us if further testing is needed. And it would be best to be at Mayo for further testing if that is what is needed. That will be a good way to keep track of how the PSC is progressing as well. And of course if there are problems throughout the year that would change the course of treatment.

So what does all this mean? It means that at this point Rick's PSC is progressing, but slowly. I am not sure how many of you know that Rick will eventually need a liver transplant, but it looks like that will be at least a couple years down the road. As the PSC progresses further it will damage the bile ducts and then it will just be a matter of time before he will likely need a new liver. Now in my little head I wonder why not just take out the diseased one now and let him feel better but that is not how organ transplant works.

On thursday we meet Rick's new internal medicine doctor. We will have lots of info to throw at him but also some other lingering questions. Like what the heck is going on with the low blood counts. And, um hello, where is the spleen? Dr Lindor's recommendation was to get another colonoscopy since it has been four years, so we will also ask the new doctor about that as well. Rick's local GI didn't think it was necessary for another year but with the crohn's/PSC combo it is better to be safe than sorry. So if we can get two doctors to recommend it be done now then hopefully we can convince the doctor to do it. After all, it has been four years since the first one.

So I think we have some good answers. I am going to try to go back to sleep for a bit. Hopefully that phone call is what I needed to get out of my funk. I just HATE that Rick has to deal with all of this. But now we have a better understanding of what is going on. And knowledge is power.

So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own. Matthew 6:34

Until next time,
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