My Chronic Life

As I wrote in my recent post about gaining weight, I’m starting to do my best to change my eating habits. It hasn’t been easy since we were recently at Disney for 3 days and visiting my Aunt at the Rehab Center means not eating at home too often.

What I’ve tried to do is eat meals at the Rehab Center if they are healthy. Believe it or not, they are not very often. I looked for some restaurants today that are not fast food places and that offer salads and other foods that will help me with losing weight. I found a Cuban restaurant where I know I can find rice and beans and a place that has pitas and salads. I’ll probably go to those to see if the food is better when there’s things like sandwiches and chips for lunch at the Rehab Center.

Now that we’re home, I’m eating more fruits and vegetables. I bought my vegetables that I like to put in salads. Tomorrow I’ll cut them up so all I’ll need to do is mix them together and possibly add tuna, chicken or sardines. I also have whole grain rice mixes. They do have a lot of salt so if I eat them I’ll be sure to add beans but no dressing.

I do treat myself to a piece of chocolate every day or some other small piece of candy. That’s my treat after I’ve eaten a good healthy meal.

Slowly, but surely I’m making the changes in my eating habits so I can stick to them. I’m not expecting dramatic weight loss either.

I have to face facts. As much as I’d rather hide my head in the sand about this I have to accept that I am gaining too much weight. I haven’t weighed myself but I can tell because my clothes are getting too tight and I can see that bulge around my tummy.

Feeling very selfish because I have so many restrictions from being chronically ill, I want to have something in life that I can enjoy with no strings attached and it’s been food. Wrong, I know but I’ve been using food to make me happy. I love eating. When I was young, I was very thin and could eat anything and not gain weight. So I got used to that.

When I was young and was upset or anxious, I couldn’t eat. Now I eat more. I’m becoming embarrassed by my looks and need to make some major changes. I don’t wear anything that is too tight-fitting because it shows my stomach. I can’t remember the last time I wore sexy lingerie, well because.

This is the time for New Year’s Resolutions. Tons of people say they want to lose weight but for me, I have not only my self-esteem at stake I have my health at stake too. This should be the incentive I need to get on the right track of eating healthy again and doing the kind of exercise that I am able.

My Aunt is in a rehab center for physical and occupational therapy after falling and breaking her shoulder and cheekbone. She was having trouble with her balance and walking prior to the fall and is even worse now. She of course only has the use of one arm and hand and it is not her dominant one. She’s a lefty and broke her left shoulder.

I guess with everything that has happened to her, the fall, the surgery, the anesthesia, her prior poor medical condition and her chronic illnesses, it is quite difficult for her to take to learning how to use her right hand. She is also very weak and it takes two people to get her to stand up from a seated position. I hope and pray that she is well enough to go home when her days are up in the rehab center. If that isn’t so, then I hope that we are able to get her more time there.

We visited her this evening and although we are very pleased with this place, she was sitting in her room with a roommate that sleeps all the time. The room was so dark. She is not by the window and it seemed a bit dreary there. I wish they had better lighting, maybe something like Quoizel lighting.

But it was a cloudy day and many of the residents were napping as it was later in the day. I promised myself to focus on the positives of the place. Of course I won’t ignore it if there are any problems, but I’m not going to get upset over small things, especially after what she went through in the hospital.

She did have both therapies today. They are still monitoring her while she eats to check on her swallowing. That pleases us a great deal. We also talked to the nurse about her arm sling as it keeps slipping and her arm is no where close to where it should be. She came into her room right away and rigged up something with a pillow while she’s seated to keep her arm up.

Now that’s good care, even in a rehab center!

I had so much fun as a young child. I hardly ever sat in my house watching TV or playing unless it was raining or I was sick. Even though I lived in the Bronx, we were safe to roam the neighborhood, play with our friends and know that our neighbors would keep an eye out for us. I was never alone, usually being with a group of friends but sometimes with just one or two others.

If I did something wrong, my parents would hear about it. It was normal for a neighbor to call and tell my Mom that we were found jumping fences or walking without our shoes. Today, I’m afraid to let my younger daughter outside in our fenced in backyard without me watching her every move.

I remember going out with neighbors’ families to the drive in movies or to dinner. My parents would do the same with my friends. And we’d have parties in our yards where everyone was invited. Things were so different then. Now we hide in our homes and don’t even know our neighbors. Our idea of spending time with our neighbors is bringing them mail that was delivered to our home by mistake. Drive In Movies are now a pop up tv set up in our pool.

This morning we awoke to loud banging on our door. It was the police informing us that there was a rash of break ins to unlocked cars in driveways. Thankfully our cars were locked and nothing was stolen from us.

It still is a scary feeling knowing that something this terrible happened so close to home. The feeling of safety and neighborhood is gone. I hope this helps to pull us together.

There is so much going on my life, a lot bad but a lot good too. For both I want to be at my best though. My Aunt who is already chronically ill had a fall at home last Sunday night. She broke her shoulder and cheek bone. My Mom, who lives with her and is the guardian of her person, has been with her at the hospital all week keeping her company. Plus the surgery and hospital stay have been nothing short of a disaster.

So I’ve been staying at the hospital too. I not only have been there for my Aunt but for my Mom too and have been trying to coordinate everything with doctors, uncaring nurses, incompetent nurses, PCA’s, and other hospital staff.

Of course seeing my Aunt in pain, confused and bruised is just terrible in itself. Add to it, that my Mom is not feeling well from worrying and that all of this happened just a few days before Christmas, it feels very stressful.

I ended up not having our traditional Christmas Eve fish dinner for the first time in my life but I had to conserve my energy. I had to stay well enough to still be able to help with my Aunt, have Christmas Day at my house and not get sick for my older daughter’s visit from Kansas.

I did the best I could. I washed my hands frequently at the hospital and stayed in my Aunt’s room only. I slept whenever I could even napping at the hospital. I prayed a lot. I vented a lot. I tried to keep things in perspective.

And you know what? I survived. I didn’t get sick, thank God. My Aunt is out of the hospital and in a Rehab Center. Christmas Day was lovely. My older daughter is here and things are going well enough.

When I was first diagnosed with Myasthenia Gravis I distinctly remember being so frightened. I couldn’t tell you of exactly what my fear was based, but it was an overwhelming fear. It was as if someone had pulled a seat out from under me and I was falling into a deep, deep hole.

The fear turned into panic as my mind wrapped around all of the information that came with the knowledge of learning about the symptoms, the outlook and the treatment. When my neurologist recommended a Thymectomy as the main treatment to prevent the MG from worsening and to attempt to lessen the symptoms and the progression of symptoms, I felt trapped like a brown recluse spider trap.

I knew logically this was the best approach to take but at the same time I didn’t want to go through a major procedure that is like open heart surgery. I wanted to run away. I wanted to wake up and learn this was all a bad dream.

Making this decision wasn’t really that difficult as I first thought it would be. At that time my daughters were 16 and 5. I knew I wanted to be as healthy as possible for them as well as for me. So I chose the surgery. It was tough, but it was worth it.

When first being diagnosed with a life altering disease, don’t feel shocked that you are frightened and feeling trapped. Talk to your doctor, get help from family and friends and seek the help of a counselor if necessary, especially if you have difficult decisions to make.