I think I have finally figured out what has caused my personal health problems, and what it is that Alex had prior to his cancer diagnosis. It appears that it was Crohn’s Disease. Only since we have no medical insurance, it is not going to be possible to get an official diagnosis.

It is certain that I have colitis, and that I also have upper GI problems, which pretty conclusively points to Crohn’s, especially when you figure in the family connections (a sister has it, and so does my mother – and Crohn’s is familial). Figuring out what to do about it though is tough, since going to the doctor right now simply is not possible. So I am working on figuring out what foods trigger it on my own. NOT easy!

The final piece of the puzzle was learning that 6-MP and Methotrexate are often used to treat it. Alex began gaining weight within two months of starting chemo, and those two drugs were part of his treatment for most of the 3 years he was on chemo. In fact, he started building muscle mass again on chemo, and was healthier on it than he ever was off it! So at least now, we know WHAT to watch for as his body readjusts to not being on the chemo.

It is harder for the rest of us though – my oldest son is now having colon pain and other symptoms consistent with Crohn’s, as is my oldest daughter. They are both in situations where it is tough for them to get treatment. And I am having to test foods one at a time. At this point, it appears that even Ensure is a trigger, since it makes me feel sick and horrid.

One of the difficulties in diagnosing Crohn’s is that it can be “silent” for many years, with secondary symptoms being the only thing you see – fatigue, muscle weakness and pain, difficulty controlling blood sugar, headaches, heart arrythmias, arthritis, chemical sensitivities, miscarriage, and other things brought on by nutritional deficiencies. It can promote either weight loss, or persistent obesity (because your metabolism slows down). It can look like a lot of other things at first. Pain may be a symptom that shows up very late in the course of the disease, especially for young children

I’ve been to doctor after doctor, due to muscle weakness and exercise intolerance (we are talking PAIN when I exercise, and I am not a wimp… I’ve been through induced childbirth eight times, I know pain!). All of the common tests came back negative, and they ended up scratching their heads, and I ended up feeling discouraged. There is no easy solution to this, but at least I know what it IS now.

It is certain to change my life. But I learned with Alex that once you adjust to the new “normal”, things become very manageable even with catastrophic illness. I may not like some of the things that it will change, but I’ll learn to deal with it because it beats pain and constant fatigue.

Our youngest son has been in treatment for Acute Lymphocytic Leukemia for the last three years. Last night, on New Year’s Eve, he took his last dose of chemo. We now enter the wait and see phase. It is a great thing to be done with the chemo. But it is scary wondering whether he’ll relapse. And for him, there are other issues as well.

Prior to his diagnosis, he had muscle wasting, failure to grow (over the course of a year), digestive problems and coordination delays. At the age of 7 he could not push the pedals on a bike fast enough to keep the trainer wheels off the ground. He did not have enough strength in his legs to push them hard enough. He also had urinary incontinence, which he still has.

Once he started the chemo, the digestive problems, growth, and muscle problems improved. He is still uncoordinated, and in pull-ups. So it will be interesting to see what happens as he “normalizes” again in the new year.

His medical problems are one reason I have kept my business flexible. Because I never know when I’ll end up camping in the hospital. My business is all on my laptop now, so I can take it anywhere.

When he was first diagnosed, the only clue we had is that for about a week, his appetite just vanished, and he lost weight rapidly that week. It was so subtle, it really was a miracle we were able to catch it that early. So a possible relapse scares me, because I fear that I might miss it. If he does relapse, it will be a more aggressive cancer the next time around. So early detection is even more important. And Alex just does not show symptoms that are like other kids.

We have had it so easy, his treatment has been a walk in the park in comparison to most. He has had only three infections (two sinus, one tunneled port infection), and he had his appendix out in the middle of his treatment. I know that if we had to do this again, it would be a totally different picture. So I have to keep my business flexible.

This year has so many things that hold promise of great change.

UPDATE: Feb 15, 2010 – His muscle wasting is back – he is managing Crohn’s Disease with diet now. He has had two scares with blood counts that went off in the winter time, but is otherwise holding his own. We still expect a relapse, and live our life prepared for it – not paranoid, just wisely prepared.

Funny how we take things for granted so quickly. A few months ago I had to work an outside job for 3 weeks. It was very hard, because I don’t do mornings well, the days were long and uncomfortable, and I missed my kids.

As soon as it was over, I went back to complacently enjoying setting my own schedule, having the kids all around me as I worked, and not having to punch someone else’s clock.

Kevin woke up sick today, and I am his substitute. So I had to be up at 5:00 am, and on the road by 5:45, just to get to work on time because the roads have patchy ice on them.

Today I remember again how much I love my life, and why. Sure, its hard and hectic sometimes. But it is also very much my life, which I have so much choice in.

Most days, I can spend an extra 10 minutes in the bath if I want. I can get up at an hour that does not leave me sleepy in the middle of the day. I can choose clothing as comfortable and informal as I like (no jammies… just cozy familiar clothes). I can work in an environment that is comfortable to me, and that is tailored to my needs. When I answer the phone, I get to say MY business name, not theirs. When I encounter someone new, I can promote MY services, not someone else’s. And the kids can be where I am, so I can be there for them.

This time, I’ll try not to forget that when I get to go back to the familiar routine.