Thursday, November 11, 2010


I didn't make it to exercise class again tonight. That means that I've only been there two times in the last two weeks. There have been reasons, not excuses but real reasons for not attending, but they don't make me feel any better. Tonight? I am still recovering from last Tuesday's infusion of experimental poison into my system in an attempt to control my IBD. The worst of the after-effects last 36 to 48 hours post treatment and include severe headaches, body aches, and fevers, and thing go-around was not any different. Sadly, though, I also ran out of a critical medication yesterday that requires a triplicate prescription, necessitating a trip down to Cedars Sinai earlier today. By the time I had picked up the prescription (why, oh why can't this doctor have the prescription ready ever when he says it will be?) and dropped it off at my local drug store to be filled, I was done. Completely done. Fever and headache back. 4:45pm. Only 45 minutes before it was time to leave again. And so I made the pre-emptive decision not to go. Again.

I won't be going to class on Saturday as Eric has signed us up for a special seminar dealing with families and it's important that I attend it. Next Tuesday, I have a commitment through the IBD center's experimental infusion program that I have to keep in order to be retained in the program and although I really have a feeling that this infusion drug is not the answer for my problems, it still helps. It's very disheartening to always be having my Slimmons schedule so disrupted these days, though.

To counteract it to a small degree, we finally had my elliptical machine built three days ago. Of course I've been too ill to try and use it until now, but this evening was day one. I'm not going to pretend that I am Suzanne Boese, one of my heroines who has exercised an amazing number of days in a row and is a true Ricahrd Simmons success story, and will be able to exercise in a like manner; our underlying illnesses are similar and I love her for understanding autoimmune issues (as I do Wendy Dahlberg), but the treatments for mine are so horrid and leave me so incapacitated that all I can do physically is what I can do. Tonight it was 5 sequences of 200 steps each. Each time I ran through them, my pulse grew higher. 110. 115. 118. 125. 128. Total calories expended for the effort according to the machine's read? 75. And I am exhausted beyond belief.

Eric says that I shouldn't expect more so soon after an infusion, but I am frustrated. Frustrated. FRUSTRATED! I remember getting ready to participate in Richard's "Party Off the Pounds" video. Admittedly, in Physical Therapy I only started at 200 steps total, but I was soon doing 270 steps per minute for 30 minutes straight! Although I still had underlying serious disease that made participating in that video difficult, I was strong. Muscularly strong. Now I am so weak...

There is a food issue that I am dealing with too. My life has been turned upside down with food challenges since joining the Splaver clan, and at my infusion on Tuesday, I had a heart-to-heart with my doctor (Dr. M- who works with Dr. V-; he's the treating physician at the IBD Center in charge of this particular study) about my escalating symptoms and how I think my food intake as well as the stress living under this roof is affecting me. I thank God for bringing Richard into my life. The old me, especially in the face of weight gain and illness would have denied anything going wrong. Denied the effect that food had on my IBD symptoms. On my life. Thanks to Richard, though, I felt empowered enough to initiate the conversation with my doctor, was candid about what I was eating and how, and especially the times that I eat.

My new family is still mostly out of control, and Eric admits that the systems that are now put in place and the order that is being established is due to me. He is the head of the family, in charge of controlling the older boys (they're full teens and the oldest is so disturbed that I can hardly describe it) as they are not going to listen to new step mom directly, but he - and they - know that I am supporting him in this effort. The younger two - Gabby and Miles - fully respond to my authority and the fact that I will take pretty-much anything away from them that I feel necessary to get them to tow the line.

Eric claims that the kids don't hate me. I'm very sure they all do. That's part of the reason that it's important that we attend this seminar. Gabby will be going with us - the older two refuse to attend and Miles is too young, but Eric thinks that the interaction with Gabby will reassure me. I have a feeling that he is going to be surprised at how she - and how she says the others - feels about the entire new situation, but we'll see. They all make no bones about hating living in Northridge and know that being here is my fault. (I can NOT make the commute from Calabasas to anywhere that I need to be on a regular basis with my disease so active, and would not have moved forward with Eric without his commitment to move to the valley.)

In the end, I truly think that Northridge is a better place for them than Calabasas, but they can't see it right now. Eric, although financially well to do by normal standards, was the poor relation in Calabasas, and they're all coming to an age where they would have soon realized it. In Northridge, we are able to live the lifestyle that his income and savings provide. They are far better off than about 50% of their classmates, and on a par with the other 50%. They are now interacting and learning to deal with cultures and races other than either whites or black kids of superstar sports figures, and exposure to real life is going to serve them well when they grow up. I know that for myself, despite now living so close to Mom and her becoming so incredibly dependent on me due to proximity as well as a husband who can fix her computer on demand, I love my new neighborhood as much as I am growing to hate the house that we are living in (nothing works here... nothing! After over 3 months, we still don't even have consistent hot water in the bathrooms... and the worst part is the lay-out of this house is so perfect and it is so beautiful and the neighborhood is so great that it should have been our dream home) and with Diane (Can Do Diane!) continuing help, we are making our way through all of Eric's left over boxes. As soon as we have disposed of all the unnecessary stuff here, we can put moving on the table. Again. Hopefully in the same neighborhood, and probably we will buy the next house instead of renting. Hooray.

OK, back on to task. I'm in terrible trouble food-wise and exercise-wise too. Again, thanks to Richard, I am unafraid to discuss it although in his class during Project Me is probably inappropriate because my issues are so unique that the discussion won't help the other classmates and those who don't know me will probably listen and think that I am just making up excuses. But I had a long discussion with Eric about what the doctor & I talked about, starting on Tuesday night in bed as he tended to my issues, ongoing through yesterday, and it's continuing again this morning. The insanity regarding food in this family has to stop, and stop now. We have agreed that we need to put order into the two refrigerators we have. The inside one is currently nothing but condiments at this point and the garage fridge, mostly empty, is the one that contains what "good" food that we have. That organization MUST be reversed and immediately. We are not likely to eat vegetables (not that I can eat ANY vegetables right now, raw or cooked) or proteins if we have to go into the garage, and when we look inside of the inside fridge and all we see is condiments, our next stop is the pantry. We are putting that in order tomorrow when the kids are back in school and won't be offering up constant opinions.

We also need to stop this insane cycle where our lives are so disrupted that we don't start getting dinner ready until 8 pm and often don't eat until 9pm or later. I've told Eric that going forward, we MUST prepare dinner in the morning right after whatever kids who are going to school have left, and then we have agreed that we will eat between 6:30 and 7:30 nightly; those nights that he or I are not here (his therapeutic groups and me at Slimmons), the rest of the family will eat in that time frame and we will have a snack (or dinner) before we leave, and another snack when we get home. This current insane schedule is not only not doing us (especially me) any good, but it's not doing the kids any good for the long-term either. They need the foundation, NOW , of a healthy eating schedule and diet even as their likes and dislikes make food planning difficult.

That's the next thing. I have never done well at menu plans; in my single life, it always worked better for me to just keep a lot of healthy food in the house and my meal selections were fine based on what I surrounded myself with. But family life is so different that it's like living on another planet. An 8-year-old won't eat what a 16-year-old will won't eat what an adult will, and we need to start making menus up well in advance. That process starts today since we finally did our very first large-scale shopping trip at Valley Produce yesterday and have healthy foods in the house. I hope to get a wipe board (yes, another one) to mount in the kitchen to announce what dinner is daily. The kids eat cereal for breakfast or whatever (don't go there... it's too difficult getting four kids out of the door assuming they're going to school at all on a given day for me to monitor their breakfast choices); most of them get school lunches although I pack Miles (age 8) his the night before, but I can can damned well plan dinner menus and insist that we all keep to them. Although their tastes are very different, most meals can be tailored so that they all will eat at least part of them. And they're already used to the idea that since I've come on the scene, what's served for dinner is what is for dinner and if they don't like it, they can just not eat. If we plan the meals now, and prepare them in the morning when it's quiet here, we can do this. We WILL do it.

For myself, my colon is so bad right now that I cannot tolerate any fresh or cooked fruits or vegetables. Salt is a killer... it's bad for people with IBD in general and I'll spare you the details why because it's gross, and I'm pretty-much reduced to eating carbs and lighter proteins. Fish, fish, and eggs. A baked potato or plain pasta here and there. It's an incredibly boring diet which, because of the insanity here as well as the lack of food choices, I've not adhered to, and that changed yesterday. Mostly. Sadly, I did succumb to some pretzels last night and I paid for it this morning. Oh god,but I paid. I am the poster child for food directly affecting my health. I know that there are lots of other poster children too - most in Richard's clubhouse - but I also know the cycle of denial they're caught up in and at least I'm not taking that affect on. I know what I am doing, now I just have to fix it. A much harder task than it sounds, but do-able all the same. I know that I can't continue on as I behaving now. I feel as though I am spiraling out of control and going to die if I don't fix my menu. And that fear is WAY justified.

Sadly, I don't have much support. There are few people who understand where I came from and what i am dealing with now, and I trust fewer than I used to. I cannot have 'friends' in my life who, if I have a bad week and need support, will not only abandon me, but will turn and attack too. I am not Richard Simmons. Yes, I stood up for him for a long time, but I did that for him, not for his target audience.

I am not required to always have my composure under control; I am not even required to keep my weight stable or my life out of chaos at all times. What I am required to do is to do what is right for me, and make the best choices I can for myself, and I am continuing to do so, and hopefully will make it back to a point where I can speak for Richard again too, but if not, I am my own first priority. Apparently many people can not live with my current attitude. I only hope that they can forgive me my frailties in time. I suppose that will happen when they don't see themselves in me so much.

I'm living my own hell right now, but I'm damned well going to climb out of this pit and bring the rest of my new family with me. I am dealing with reality, not what my imagination is making up. Eric knows that where I'm headed is a better place for us all, and he's committed to following whatever I decide on. So it's really up to me. I just have to be strong. And I have to pick the friends I keep close to me wisely so that I have the support - in all areas, not just diet and exercise - I need. There are plenty of resources out there. It's like the old "Love Yourself and Win" tape that Richard had me participate in. I have to "Practice Patience" as I seek out what I need.


Claudia said...

You are absolutely right. Your only priority should be what is best for you, Eric and the kids right now. I really think that as time goes on and you all get more comfortable with each other things will change and change drastically.

I'm sorry that you are having such a bad time with your IBD. I know you have been suffering for such a long time with this. I know how much you hate when people tell you to hang in there but.....hang in there. Hopefully things will get better.

I have no doubt that your influence on the Splavers will be lasting and beneficial. They are like that untrained puppy I like to talk about. You need to train them and don't give up until you have succeeded. I know you will.

I love you so much,

Pickyknitter said...

I love you too, Laura, even though I lurk on the site and never call. Cheers to you for being honest and determined and thank you for sharing. It sounds wonderful that you have Eric to support you and I wish all of you the very best.


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