masking the pain

Putting on a mask to hide my pain is something I have developed over the years. Living with chronic pain and fatigue is not easy. As a kid I was often miserably ill with infections and terrible stomach pain. I would get very irritable and have panic attacks at small things. Something in my body wasn't right. It was so frustrating to have that feeling like you are trapped in a body with so much pain or frustration. Now I ache and have pain but I do have more metacognitive skills. I can tell myself it's because of this or that, and calm myself down.

So over a matter of time I developed a brave mask that I wear every day when I am not home. Perhaps it stemmed from being mercilessly teased as a child. Just because I was shy. When I grew up, I knew I couldn't appear weak or vulnerable. So in I my adult life I’ve worked really hard to be the best that I can be at my work, perhaps to make up for any weaknesses that I can’t control, like my health.

One of the downsides of having this mask is that I have a hard time revealing my true pain to the outside world. At this point, the person who sees the weak, vulnerable me --who writhes in pain or who can’t get up to even get a glass of water --is Chris, my husband. I am lucky to have him in my life, but I know it’s a burden on him to be the only witness to my pain at times.

I don’t think many people in my life realize how much I have gone through or am going through. It’s because I hide it pretty well. For example yesterday I completed an IV treatment in an hour and then hopped back in the car to my meeting at which I had to present at. The magnesium in the treatment was making my drowsy and a little drunk feeling, but I sucked it up and hit the road, and rushed into the meeting. Thank goodness all the water helped me process the vitamins and I was back to normal to speak to my colleagues within a half hour.

I am also very sensitive to the little things people say. When a friend told me I was too young to have asthma, I assumed she was thinking I was feigning illness. When I hear others complain about how much time so-and-so took off, it sets the guilt for the next time I feel ill. I also don’t really know how people feel about me when I have to skip out on a party or going to dinner. I am not sure if they DO understand or just think I’m a party pooper. I’ve gotten to the point where I don’t worry as much; I just have to do what’s best for me. But I do miss the company. It’s lonely resting a lot.

The hardest thing about chronic illness is that it doesn’t go away. You can’t just take a day or two and rest and it gets better. I take a whole summer off and get better, only to fall flat on my face this fall. It’s the nature of Epstein Barr. Also this is true with my back condition. It can feel great for a few months, I’ll be lifting things and doing anything I want—then in a matter of moments I can be flat on my back with ice on my muscle spasms.




If you think of the stages of grief, I’ve been through it all. I’ve been in denial until the pain got too bad to ignore. I’ve been seriously pissed off—at my doctors, at myself, at my body, at the world. I’ve been depressed and without hope as to a cure or chance. So now what, acceptance? I’m not sure I’m there yet. Because to me acceptance means complacency.

I don’t have a plan yet. I take every day at a time. I do know that I no longer use alcohol, barbiturates, or stimulants to control the pain and fatigue and I am proud of that. I am proud of how far I’ve come and my improved attitude. It’s just on days where the work piles up, the options for relief are grim, and I feel trapped in a painful tired body that I want to give up. But show this to my students, colleagues, or even good friends? Nope, I’ll probably put my mask back on and make it look alright from the outside.

portland, oregon

A while ago Chris had planned this trip to Portland, Oregon for a Thanksgiving weekend get-away. I am glad it was all planned and set because given how tired and exhausted I've felt I most certainly would have backed out or reneged if the hotel was not already paid for. Plus, Chris had some work to do on Monday and Tuesday and so he would already be heading down to the area.

First, we headed to Blossoming Lotus, a vegan restaurant that has a lot of raw food. I tasted their nachos (waaay too much cashew cheese) and tomato soup (yummy). Chris had the live wrap. I tasted some. It was very good, gooey and delicious. When we went back for dinner (yup, to the same place), I had the live wrap. I would have had the pizza had it not had figs on top. The idea didn't appeal to me. Pizza and figs? I also had the live fudge as a dessert. Chris decided to eat a cooked meal for dinner. He does this frequently at home so I think that was ok. His downfall was that he was coaxed into a vegan chocolate cake for dessert. He was very ill from eating the whole thing. I told you so! Ha.

Although we had some fruit and pecan raw cookies with us, we decided to head back to Blossoming Lotus in the morning. The servers were getting to know us! I suppose we could have branched out but it was only a few blocks from the hotel. Chris got the buckwheat granola with hemp milk (freshly made) with pluots on top. I got a cherry-cacao bar and a berry banana smoothie. The smoothie was good, although sweet. Later on for lunch we went to Whole Foods to get salad. The salad bar was not that good. Nothing like the Portland, Maine one which seperates out vegetarian and carnivore items.






Thanks for reading. I struggled to find a picture in which I didn't look completely exhausted. I'm not sure I succeded, but we do look happy.

What turkey means to me

One of the most interesting experiences I've had with animals was volunteering at our friends' birds sanctuary. For a week I was to care for their eclectic sanctuary of birds. Some of which were rescued turkeys bred for human consumption. These turkeys were so big that they struggled with standing on their own feet. Their bodies were bred to be so large and disproportional that it was painful for them to stand at times and they would simply fall over. They would also get frequent respiratory infections due to their beak mutilation as chicks.

But they were free. They didn't live in cages, they had roam to nest and interact in a non-stressful environment. The male turkeys were very protective, fluffing up their feathers to protect the females in the bunch. The vision of a fluffed up turkey, feathers bright and beautiful is actually a male either showing off or in protective mode. Henry was the turkey I grew to really like. His black feathers would show rainbow highlights in the light. He followed me around as I laid our the food and changed the water, cautious in every move.

I haven't participated in eating turkey for the past 15 years. Half my life. Every time I think of a turkey, I think of Henry and the girls at the sanctuary, living peacefully. Or I think of the wild turkeys that would roam in the fields and neighborhoods in Western Massachusetts, well-proportioned, able to run, free from cages and antibiotic overdose. I don't want to dwell on the image that you see this Thanksgiving, but I just want to present an alternative. To give up eating an beautiful creature and choose life instead.

For those of you who get it, start a new tradition .

IV treatment #2

I was trying to imagine what is going on in my body and ran across this cartoon. I like the faces, although I don't know if my cells have those or emotions. One thing I do know is I am having lots of symptoms that show my immune system is working. For one, I am REALLY hungry. So I am eating. Mostly raw, including lots of raw nuts and dates, fruit, greens, and seeds. I did indulge in saw popcorn last night--stove-top popped, with a little oil and salt. Pretty unprocessed. This girl's gotta eat! I think it might be something to do with the cells needing energy to fight.

And I have a bit more energy. I am still resting because I'm not up to 100% by any means, but i am not totally prone on the couch either. My treatment last time lasted 4 hours because of a clot in the line. Not dangerous, just making it so the fluids couldn't get in my body. So they had to switch arms on me. The student assigned to me was very sweet and stayed far past his shift.

Off to make more food. On the list is raw pumpkin pie and some sort of mock-turkey made of nuts. I also got some green beans to perhaps steam. And I'm still working on some delicious raw pecan cookies that Chris made. Enjoy your day!

more on vitamin C

Since writing about my treatment of IV Vitamin C, I've been told of a doctor named Hugh Riordan who really pioneered the use of intravenous use of vitamin C. Apparently he thought it could cure all kinds of things from insect bites, to depression and tumors.

Here are some interesting articles I found:

Overcoming Depression, an article about how depression may be linked to low Vitamin C, written by Hugh Riordan.

Intravenous Vitamin C in a Terminal Cancer Patient, an article about how Vitamin C may help fight cancer.

Vitamin C Megadose, a good old wikipedia article about the pros and cons of vitamin C megadosing. I thought it was interesting that they said humans may just not synthesize vitamin C well.

BTW, my Christmas wish list: gift certificates for IV bags. Not covered by insurance.