Each time that I go to the doctor, I come away filled with anxiety over all the bad things that can go wrong. I get this sense of urgency to get off the prednisone (from my rheumatologist mainly) but I know that if I push too hard too fast that my body does not react kindly. I have been there several times already. My gastro doc understands this and tries to find other alternatives for me, but there are not many options. So then I begin to feel trapped. There is nothing left in the medical world right now for me except more fearsome decisions about trying the anti-TNF again and risking more neurological problems or even worse, colon removal. I am also scared to death of all the possible problems that I could have in the future and am frightened of getting old. I already have osteoporosis and have this fear that I have already ruined myself for old age by being on a high dose of prednisone for so long.

Living with a disease is pretty scary - especially one like Crohn’s where the fear of the loss of control over your own bodily functions makes a person want to stay at home where it is safe - where you know that you have control. Sometimes I get filled with panic at the thought of having to go back up on the prednisone and don’t want anything to deter me from my progress of getting off this stupid medicine. I don’t want to go back up on this drug more than any amount of pleasure that I may get out of eating some chocolate or a cheesecake or some French fries. I am happily giving up anything that causes irritation and am being very rigid with my diet. I am also working on trying not to be an over achiever. I don’t have to be stellar at work; I just need to be healthy. I am trying to put more rest time into each day and attempting to not stress about things. I am letting go - or working on letting go since that in itself is a process.

I start panicking when I think that I won’t have control over a situation. This panic causes me to plan more because I think planning gives me back a sense of control. I am now worrying about the cruise that my husband and I are taking for our 10 year anniversary in October. I’m just not sure that I will feel good after 7 days of restaurant food and shore excursions. I am going to call the cruise line and see if they can make special food. I am certain that they could - I mean, my diet is pretty simple -rice, fish, chicken, no spices- pretty plain stuff. I have told my husband that I may not feel good but still feel anxious about disappointing him and causing him to have a lousy time. But at this point, I don’t care if it is an anniversary cruise or not, I will do what is best for my health and not what is best for my husband’s entertainment. I am worried about it now, but I am sure that it will turn out fine with enough planning. I have great advice from all of you in your comments in my previous blog about our trip to San Francisco.

Yes, living with Crohn’s is scary but we have to face the fear. Instead of staying in my safe house, I will get up out of bed and face the fear square in the face. I will go to work, I will run meetings, I will go on vacations, I will dance, I will visit with friends, I will live my life and I will NOT live in fear. I will not live in fear of this disease (or while I am at it - terrorist, death, or a million other things in life that make me afraid). I will not hide away nor will I go gently into the night!

I will fight, fight, fight, fight, fight, fight, fight….

Hope you will too!

Kelly

My daughter gets upset when we fight, which is normal, but this time she was acting a little bit strange. She had put something in my purse and was giving me hints that she wanted me to find it. When I looked in my purse, I saw that she had placed her wallet (with all of her allowance money that she has earned over several months) into my purse. I asked her why she put her wallet in there and she told me that she was giving all of her money to the Crohn’s foundation. I just wanted to cry. It was the sweetest thing that she has ever done, but I kept asking myself – why? I felt so guilty and really felt like maybe I have been talking with her about my Crohn’s too much lately. I mean, since she is with me a lot she knows when I am sick and I have been pretty honest about it with her. She knows that I have been raising money for the Crohn’s Take Steps Walk (she walked with us) and she knows the importance of my health and my regimen. But she is almost nine now and is starting to think about things more and I have discovered that she really worries about me.

When I was putting her to sleep that night, I started talking with her about her fears. I told her all of the good things that come with my disease. For instance, I take time to play with her more because I realize just how precious every moment is. And that I may not ever be heavy because I can’t seem to eat anything but fish, chicken, cooked veggies and rice. And this means that I will be healthier in general. I talked about how I get to try to get more rest and sleep more. Of course, she points out that I don’t sleep, but I said that was okay because I try to rest and relax more. I told her that even though I get sick and will probably get sick in the future, I am a strong woman and can take a lot. I also let her know that she does not need to worry until I tell her that she needs to worry (which will be never).

I talked with my best friend tonight about this and she pointed out to me that whether healthy or sick, we all impact our children’s lives and it matters more what they learn from the experience. I hope that I can teach my daughter how to face the hard battles in life with an optimistic attitude and a smile. She is certainly what motivates me to behave better.

I apologized to my husband for yelling at him and did this in her presence and just explained (once again) how I get too sensitive sometimes. I do need to watch my outbursts and make sure that I watch what I say in front of my daughter. She really pays attention to everything.

Take care everyone,
Kelly

I made sure that we had a kitchen in our hotel room and in the evenings we would come home to the hotel and eat dinner. It was great. We got an amazing deal with Marriott because they were having some sort of special using their points. At the desk I asked if they had two beds and the lady upgraded us into a fantastic room with two separate bedrooms and a full kitchen and pull-out sofa bed. I usually don’t sleep well on travel, and my husband and I don’t sleep well together (I am too antsy and he tosses around too much). We would go out touring the city all day and return home in the evening, eat, shower, watch a movie and go to bed. I was well-rested.

Today I have had diarrhea pretty bad with lots of cramping, but at least I am back home. I stayed home from work today to rest. I felt bad being out another day, but really, I am the only one worrying so much about it, and it is a lot better if I just take care of myself. Hopefully I will get back on track soon. Of course, now I have to go down again on the prednisone, but I don’t plan on taking any more trips or doing anything exciting for awhile.

I am so glad that I went. I was scared and hesitant, but it really worked out well. What was really nice about the trip this time is that I have been more open lately and telling my husband what I need and want. And he really did work with me on this trip, and he saw how well I did. I think that he will be more open to helping me in the future instead of trying to make me conform. I was also very firm in my needs but tried not to make it too much of an issue. I need to find the perfect balance of being careful while enjoying myself. I don’t have any regrets, and I think that I really would have missed out on something wonderful if I had given into my fear. Now I can say that I have crossed off three things that were on my “things I want to do before I die” list. And, because my husband is getting more clued in on all my Crohn’s stuff (hopefully he will continue) we have been getting along really well, and we all enjoyed being with each other.

Take care,
Kelly

Travel usually means not sleeping well and eating foods that don’t agree with me, and I usually don’t feel all that great after a trip. I ended up telling him that I wanted the plane trip to be as easy as possible (a direct flight being the most preferable). After a few Internet searches of my own, I thought that we wouldn’t be able to go, but then he found a really good deal on Southwest Airlines. So then we discussed times – I didn’t want to get there too late because I didn’t want to mess up my schedule too much. I have learned that the less stress I put on my body, the better I cope. The best deal would be to leave Thursday night and arrive there late, but not too late. I guess that it really doesn’t matter, since I can never sleep anyway and we won’t have to get up early. So, eventually I found myself out of excuses and realized I should just go.

We argued because he said that I was being difficult and had too many constraints; I told him that it must be nice not to have any of his own. He should be thankful that he doesn’t have all these requirements and that his body can take some amount of abuse. I got mad because I didn’t think that he was being sympathetic enough, and that he should want me to get off the prednisone just as much as I do. I’m not sure that he could ever understand how much I hate this medicine and wish that I could be free of it.

I have traveled around Europe for the last five years, and on a lot of our trips I felt bad and didn’t fully enjoy myself. When we went to Greece, my iron was so low that I almost had to have a blood transfusion. To make matters worse, my stupid fistula was leaking a lot and I had diarrhea. But I still managed to look happy and enjoy myself a bit. How I feel varies trip by trip. For example, our trip to Washington D.C. was horrible for me, but the trip to Venice was wonderful and I even managed to relax there and forget my troubles. The Venice trip was during the time when I was having a lot of neurological problems with the medicines I was taking, and I needed to unwind big time. So you just never really know how things will turn out.

What I keep thinking – and why I have even ventured to travel as much as I do – is that I only have this one life; I won’t get another one. I could probably be happy just staying in my house and being safe, but would that make me happy [in the long run]? Maybe there will be something amazing to see or do in San Francisco; and what if there is not another opportunity that is as good as this one? I guess that I am afraid to go; but more than being afraid of going, I am afraid of regretting. I will not live in fear and be bounded by this disease. So I will go to San Francisco and try to enjoy myself, no matter what my body wants. I will mitigate and really make a point to put my needs first so that I can come out on top. I think that I will pack an inflatable air mattress in case we can’t sleep together, and I will bring rice milk in case I can’t find it in a store.

Thanks for listening,
Kelly

A couple of years ago I had to have surgery to remove an abscess. They were supposed to only drain it, but they ended up making a large incision and leaving it as an open wound so that it would heal in such a way that the fistula could not drain via that route anymore and hopefully negate future abscesses. The few days after the surgery were the worst because nothing was as I thought it would be. I would have to be out of work for a lot longer than I planned, and my body had this huge ugly cut that I had to have a nurse come to the house and take care of for 10 days after surgery. I remember looking at the recovery ahead and not knowing if I had the strength to go through it all. I was physically tired and tired of my Crohn’s and tired of dealing with it all, and now I had something new to deal with. I remember thinking that life is not fair … and it’s not. During those moments, I let myself wallow in my emotions for a little while – but then I get myself in gear and remind myself that everyone suffers and carries some sort of a burden.

Every time that I have been in the hospital I have looked ahead at the road of recovery with a very heavy heart. It can be overwhelming. I feel disappointed that I’m in that position and know that I will not be the same as I was before for a very long time, if ever, and I fear what the future will bring. These emotions are at their peak during the first few days into recovery. But after a while, I get used to the rhythm and the new mandatory maintenances that my body requires, and I become less and less overwhelmed. I could see that my uncle’s brother was at the stage where he was looking at the road to recovery with all of its fear, uncertainty, and difficulties. He will find out if he has to go through chemo this week and hopefully he won’t have to so he can recover and see that life without a bladder will not be so bad – just different. He seems like a strong person, so I am sure that he will be alright.

This last year, my doctor told me that I may have to have my colon removed and that would mean the addition of an external bag hanging off of my abdomen. This prospect scares the daylights out of me, but I have imagined what it would be like and have gotten a lot of feedback from those of you who have had a colostomy. I know that if this ever happens to me (and hopefully will never be necessary) that I will be scared and afraid of my new body, but I also know that with time I will make it through. Time heals. So for all of you that are looking at that long road ahead, do not fear. Time will heal and you will start to feel better. Keep strong and keep your spirits up.

Oh, one more thing… I met an amazing 99-year-old woman who still can drive her car and is very active. She was such an inspiration. She had such a good attitude about everything and smiled and laughed the whole time that I saw her. I really think that attitude plays a lot in our health.

God bless,
Kelly

You are probably wondering why I am writing about our pet Stella in my Crohn’s blog. Well, as it turns out hamsters are very sensitive to stress. They do not like change and get anxious pretty easily. I read the “How to Take Care of Your Hamster” book after we got her and it states that after you buy your hamster you should leave them alone for a few days to let them adjust to their environment. They say to put hamsters in a quiet calm place and that they sometimes get stressed with too much activity. Intrigued, I kept reading, and it also stated that if a hamster is too stressed they get this condition called “wet tail.” I think what that means is that their insides start to give them problems and their tail end gets wet because of it.

I know that Crohn’s can’t be cured by lack of stress and is not caused by stress, but stress certainly plays a large role in our well being. I have noticed lately, that I can’t relax until I have some quiet alone time. I usually find this time after my husband goes to bed because when he is awake a lot of noise accompanies him (mostly the TV). But he falls asleep first which usually allows me to get back up and come out to the living room to read the comments on the blog and pray for all of you, or read, or wander aimlessly around our house which I love.

When I had my quiet time the other night I kept thinking about Stella and how she is affected by stress. Stress that we may feel is minor but to her it can affect her little body in such big ways. I am like my pet hamster. Except she has owners who realize that even a little bit of stress can be damaging and therefore try to minimize it for her. But who will minimize the stress for us? No one except ourselves! We have to find our own stress relievers and ways to reduce our stresses.

Since we have a disease, it is that much more important to pay attention. It can be really hard to know when you are overstressed. Isn’t it so easy to say, “I can push it this week and rest later - I’ll just work on this presentation a few more hours even though I need to take a bath and get ready for bed because it is already eleven at night and I have to get up and go to work in the morning.” I have been known to push myself too hard for several reasons. One of them is that I worry that I will not feel as well tomorrow and therefore I need to seize the moment. The other is that I am always trying to do a good job and please everyone. What I have to do, and what we all need to do, is do the things that we need to do to relieve the stress of the day.

The prednisone does not help our situation because one of its side effects is anxiety. What I have been doing a lot at work lately is taking these mini breaks throughout the day – every couple of hours. I usually try to take a lap around the building but sometimes can’t walk that much due to my joints – but most of the time it’s okay. While on these breaks, I force myself to take at least 5 deep breaths in a row – breathe in, hold it, and then let it out. And I try not to allow any work thoughts or ‘things I must do thoughts’ to enter my head for those deep breaths. These seem to help. At least I relax a little bit for those moments and I feel that I am getting better at letting things go. It takes practice. Also, as you know, I am very fond of my bathtub and take a nightly bath with Epsom salt (which has miraculous powers to heal aching joints and sore rear ends). Since there is not a medicine out there for me other than the Imuran, prednisone combo (I have had reactions to everything else), and because I hate the prednisone so much, I am going to try to de-stress myself as much as I can and eat very boring food (ha ha).

I have a big presentation to give tomorrow so it is going to be a challenge to de-stress tonight and tomorrow, but I’ll try!

Kelly

Clinton’s plan - Require everyone to get health insurance, subsidized by employers and the government; pay for it by rolling back tax cuts for households earning over $250,000 and savings in the existing system.
• Requires large employers to provide insurance or contribute to the cost.
• Provide tax credits to small businesses and subsidies for low-income people.
• Create a pool of private plans similar to the program for federal workers and one public plan similar to Medicare.
• Make plans portable from job to job.
• Expand Medicaid, State Children’s Health Insurance Program.

McCain’s plan - For free-market, consumer-based system; has pledged affordable healthcare for every American without a mandate; says universal healthcare is possible without a tax increase.
• Sees controlling health costs as a top priority.
• Make plans portable from job to job and accessible across state lines.
• Provide $2,500 tax credits ($5,000 for families).
• Revise tax code to “eliminate the bias toward employer-sponsored health insurance.”
• Move to compensate medical providers based on the quality of their work.
• Bring greater competition to drug markets by safe reimportation of drugs and streamlining the process for introducing generic drugs.

Obama’s plan - Require that all children have health insurance; pay for it by rolling back President Bush’s tax cuts for households earning over $250,000; aims for universal coverage.
• Requires employers to provide insurance or contribute to the cost.
• Exempt smallest businesses.
• Reimburse employers for catastrophic health costs.
• Provide subsidies for low-income people.
• Create purchasing pool with choice of competing private plans and one public plan like Medicare.
• Make plans portable from job to job.
• Expand Medicaid, State Children’s Health Insurance Program.

When I lived in Europe, I was introduced to the social healthcare system in Holland and in France. It was basically the same as over here, except that the cost to visit a doctor, even a specialist, was very cheap. The most that I ever paid for a doctor visit was 50.00 euros and this was a heart specialist who did an EKG and an ultrasound in the office. I had to pay the cost up front because I was covered under a private insurance and my insurance company would refund the money. But still, I thought that it was cheap enough that I could afford it even if they were not refunding me.

If you were covered by the social healthcare system, you had a special card that looked like a credit card and they would use that card as the method of payment. If I recall correctly I don’t think that they had to put money on the card, I think everyone got a certain amount. And, in Holland, they kept track of all your healthcare records electronically. They had a government database that all the doctors and pharmacists were plugged into and everyone knew the same medical information for you. There was no repeating your information to each doctor a thousand times because it was all in the database. I found it very nice and a very high tech system. France was not so sophisticated, they did not have a huge database but each doctor wrote a letter to your general practitioner explaining exactly what he or she did during the visit and what your symptoms were. This allowed my general practitioner to always know what was going on with me because he was in the loop.

The big problem with the social system is that the taxes were very high and sometimes there could be a long wait for a procedure. This was obvious to me more in Holland than in France. In Holland, they would often tell me that I could not get the procedure done for six months or so, but they would usually call within a month with a cancellation. For some reason, for me, I didn’t encounter any problems with wait in France. But in France, I went to a private hospital for the fistula complications rather than the main hospital (where I went for my Crohn’s appointments and Humira shots). It was much easier to have a procedure done at a private hospital (clinic) rather than the hospital.

I think that the cost of seeing a doctor here in the states is surprisingly high and if you don’t have health insurance, I am not sure how someone with a chronic disease can afford it. I guess you could go to the emergency care or if they have some sort of out patient service. Maybe someone can provide more insight? I think that the cost for a doctor visit is high because all the doctors have to pay such high fees for the malpractice insurance and lawsuit protection.

One other problem that is very noticeable is that the insurance companies seem to dictate our medical treatment. The doctor prescribes me a medication and the insurance company says that they will not pay for that medicine that I have to take this other medicine that is not as good. Who are they to decide?! The doctor is the one with the medical degree and is the one who knows my situation and for reasons which the health insurance company may not know, he prescribed me that specific drug – not the one that they want to pay for. It is all about money and it should be about health.

I don’t know what the solution is or what it should be, but I think that it would be an interesting topic of discussion. I am interested in hearing your opinions.

Take care,
Kelly

I will start by saying that I am generally good. I have decreased my prednisone to 15mg per day and the last couple of days I have been a little depressed and very tired. I know that it is my medicines that make me feel this way, but still, it doesn’t make the sadness go away or the irrational thoughts, joint pain and certainly doesn’t make my mind work faster. I just have to wait it out until I get balanced again. I was feeling really good but feeling really good means that it is time to decrease my medicine. But I am happy to be going lower and will keep on being tough.

Last week was the first week my husband has been on travel (he still has two more weeks to go) and I thought that I would be able to rest more since I do not have to worry about his needs. But I don’t have time to catch up on all the things that I thought that I would since it has been pretty busy around here. Plus, I think that I was (as usual) way too optimistic on my “all the things I will get done while my husband is away” to-do list. I am not getting anything done. I read the HealthTalk bipolar blog entry called, “Breaking social commitments” by Haley Morrison and this is the cycle that I am in right now. I get lonely and sad by myself, but then I don’t want to go out, visit family or do things because that takes me away from all the things that I think I should be doing. And the list of things that I think that I should be doing is a long list. I drive myself crazy. I don’t know if these things are from the prednisone or if I may have a touch of bipolar (it does run in the family), but I understand exactly what she is talking about.

I go to all of my appointments tomorrow. I have to get an injection of Boniva for my bone loss and see the rheumatologist and the gastroenterologist. Since the doctors are far away from my job it requires me taking time off, therefore to be more efficient I take make all my doctor appoints on the same day. My doctor’s offices are all near each other so it works out pretty well. Having all of my appointments in one day also saves me from having to continually tell my work I have a doctor’s appointment.

I had a tough time with my intestines yesterday morning, and I still hate the bathroom stalls at work. But overall I am maintaining and able to enjoy life more lately, and I’m thankful for all that I do have.

So…how is your Crohn’s today?

-Kelly