Share it Please
I wish that when I tried to tell my neuro-opthamologist that the medication is making it hard for me to function as a normal human, he understood that I meant that walking two blocks or folding a load of laundry leaves me tired and out of breath. I wish he understood that this is NOT NORMAL for me, that two months ago I could do these things and lots more without any trouble. I wish he could even fathom the idea that getting everyone out of the house, working 8 hours, and getting everyone home takes so much effort that I have nothing left and most nights I fall asleep when my kids do.
Instead, he seemed to hear me say that I don't want to make an effort, that I needed him to tell me to start small, walking one block, then two, then four. I KNOW how to create an exercise program. I am so exhausted mentally and physically that a lot of days, I want to cry. Instead he seemed to hear me say that I just can't be bothered, or that I am not trying, or that I am making excuses. He seemed to think it was a little silly when I suggested I needed to do a doctor guided weight loss program that didn't involve activity.
I wish that he could understand what it's like to have this illness and to put this medication into your body and feel it take your life away. I wish he could fathom what it's like to spend hours each day thinking about your weight and how if you could just SOMEHOW DO MORE that maybe it would make things better. To feel like a failure because in the past you HAVE lost weight in a way that was normal and healthy (eating less + activity!) and it's the only way you know how, but now you can't even do that because activity is so hard, many days virtually impossible the the levels you'd need to maintain to see the significant weight loss that needs to happen to possibly improve the condition.
I don't even have the words to describe how mentally exhausting the last couple of weeks have been. I went to the doctor, and my optic nerve swelling has gone down on the higher dose of Diamox. But my side effects are bad. I can't tell the difference between the side effects from the medication and any side effects I might be having from the actual IIH.
I wish that when I asked in an online forum of 1800 people whether anyone had experience with medically required weight loss, guided by a doctor, that didn't require activity, that people understood that I wasn't talking about being lazy or having PCOS.
I don't need advice about juice cleanses or herbal wraps. I need referrals and recommendations for doctors. I need to lose an amount of weight (ideally 2-5 lbs/week) that I don't feel is safe or wise to lose on my own without the help of a medical professional. I know how to eat right. I know how to follow points, and I understand about processed foods, and I can count calories. That is not what I'm asking.
Right now, I feel like my life isn't happy. Last summer and fall were amazing, and I had these months of doing all these things I was passionate about, that I felt like I'd been waiting years to do, I felt like I was blooming.
This spring and summer has turned into the summer of nothingness, of sitting and being unable to do much of anything. I got to go on vacation with my Mom overnight and I was exhausted. I want to take my kids on hikes and to the beach, but I don't know if I have the energy to do it. Some days, I feel sick to my stomach. Some days I have a hard time eating because I have strange tastes in my mouth and no food sounds good. Some days, it's all I can do to stay awake. Many days, I take caffeine
All of those blossoms I bloomed last year and kept going through the early part of this year are wilting. I haven't posted anything to Born in Bellingham in months, after being on an awesome posting schedule for a while with birth stories and guest posts. I don't know when I'll teach my next Birth Boot Camp Series. I haven't written a movie review for the last 5 movies I've seen. I FINALLY got back on Weight Watchers and started eating right, and I can't do that either. I wanted to start taking pictures again and blogging, not doing those things either.
It's all just lying there in a heap on my floor, and I'm too tired to pick any of it up. I feel like I'm failing myself. I tell people I will email them, and I never get to it. I have had the same things on my to-do list for two months because I never have a chance to get them done. If I manage to find a bit of energy, I try to do laundry or dishes if I can.
Where Do We Go From Here?
I have talked to a nurse about the Ideal Protein program, but it's expensive. It also sounds like what I need. I'm struggling, I cried the other night and Justin said we'll figure out a way to make it work. It's risky to do because we don't have extra money. But WHAT CHOICE DO I HAVE? I can either do something drastic, or I can keep living this fucking life of nothingness that I'm living right now, suffering from this disease and the medication, miserable.
Of course, worst case scenario, I lose the weight and taper off the Diamox and my pressure shoots up, and I'm not in remission, and I still need a shunt. I don't even want to think about it. It's possible. Weight loss doesn't work for everyone. But I HAVE to try. Because I have to know that I TRIED. Because it does work for some people. And if it does, and I go into remission, I can get my life back. I can have time for the things I love again. I can have something left at the end of the day for my husband, which I don't have at all right now. I can ENJOY life again instead of trying to just get through it. I can look forward to evenings and weekends and activities and not just spend every spare moment worrying and wishing for a break.
This is where I am. Unfortunately, I think this summer is probably shot, it's not going to be great, but maybe 2014 will finally be the awesome year I've been waiting for?!? I am going to call my insurance company today to talk to them about whether there is any even remote possibility that they'll cover some kind of costs for any type of weight loss program. Who knows. Otherwise, I just have to figure it out, I guess.