My Chronic Life

I recently stood on a scale and got weighed. It wasn’t my choice. I was at the doctor’s office and it was pretty much mandatory. But guess what? I was pleasantly surprised! I ended up weighing less than I did a month ago, even 6 months ago. My blood pressure was normal too. I’m in shock but very, very happy.

With the hot weather upon us already I can actually picture myself tying on swimsuits without freaking out. I can even think about buying some new shorts and capris too. How a few minutes on a scale can make me feel a bit light headed is quite funny to me.

I guess the short time I ate junk food while stressing out over the Single Mothers ministry at church didn’t really affect my weight. And adding some easy exercise is helping me out too.

I’ve been in a real brain fog lately. I found out that my potassium is still low after increasing my dosage. I’m going to have to take a new form of it so that I can absorb it correctly. It’s an tablet that dissolves in water like Alka-Seltzer. So feeling weak from the lower potassium has me doing all sorts of crazy things or should I say crazier than I normally do?

Today I had an appointment with my cardiologist. I had just been there the day before with my Mom who was having high blood pressure in the 170’s. I left the house in plenty of time but I kept thinking I had missed the medical building. In actuality I hadn’t even drove near it yet. So here I was doing U-Turns, driving into parking lots so I could make turns, and asking myself where was I?

That’s a scary thought when you’re in your own neighborhood. I could understand asking myself about things I don’t know about like what type of brake pads my car needs, or what HDMI cables are, or how to ftp a plugin to my blog.

I finally arrived for my appointment. I was about 10 minutes late. I thought my blood pressure would be hight but it was very good. I am scheduled for an echocardiogram next week because I have mitral valve prolapse and rheumatoid arthritis. So add another doctor’s appointment to my “to do” list.

As I posted earlier I hope to add a little humor to this blog along with the medical information I usually write about. I hope that I at least get you to chuckle a bit or even smile. I’m not looking for big laughs here.

Here’s some of my survival tips for brain fog:

• Act like everyone else is forgetful and you’re the only one that knows anything.
• Add some dell memory to your diet
• Talk like you’re on heavy medication. Tell people that you’re on pain medication because you have this odd disorder no one’s heard of. But say it all jumbled up.
• Say, “What? I can’t hear you.” when someone asks you a question and you can’t remember the answer. You can blame it on water in the ears.
• Tell people that you just woke up and haven’t had any coffee yet.
• Bump into things and walk like you’re dizzy. Then say, “I’m dizzy.”
• Compliment people. That always makes them forget (hah, forget!) if you’ve said something wrong or can’t remember something important, like their names.
• Get away as fast as you can if you’re asked a question, you should remember the answer but you don’t. Say later on that you had a restroom emergency. No one in their right mind would ask you for details on that excuse.

Try to find humor in everything. Laughing is good for you. And it sure makes being sad or angry a lot less desirable.

I have an opportunity to take part in a treasure hunt. Staying healthy often means finding things to do that make you happy. Well I have a chance to do something new and exciting. PayU2Blog and jewelelegance.com are running a treasure hunt where the winning prize is a 14k God Anklet.

Some other things that make me happy are diamond pendants. If I could have a few of those I’d feel great! Just kidding…or am I?

Living in Florida, taking multiple medications, having fair skin and a family history of skin cancer all have me using sun block and trying to stay out of the sun as much as I can. Add to that having a diagnosis of Myasthenia Gravis, which heat can exacerbate, you’ll usually find me with with a big straw hat, going into and out of air conditioned cars, stores, homes, etc.

I’ve been using a spray sunscreen so it saves some time with applying it. Then I have a cream that I use on my face. I already have Rosacea so I really have to be careful getting any sun on my face. I look like I don’t live in Florida being so pale but that’s what I have to do.

I’m happy to be over getting pimples on top of the other skin problems I have. I remember being a young woman in my teens and twenties and not only having acne on my face but on my neck and upper back. That was much worse than being pale. I found a great dermatologist though who helped me with the best acne treatment for me. It took some time but soon I was acne free.

Some people view not having a tan as a missing out on a beauty routine but I think that I’d rather not worry about skin cancer than try to look good.

 
Since I have brain fog which affects my remembering words, I’ve come to say a lot of new words to fill in the blanks. Some of them are downright funny and some are really embarrassing.

I’d love to hear about the words you use. Here are some of mine:

• Thing
• Doohickey
• Ummmm
• Whosiwhatsit
• You Know
• That
• What’s It Called

This is a continuing series which began with this post about the stages of grief and continued with a post on “Denial” , “Anger“ , “Bargaining“ and “Depression“. Looking at the diagnosis of a Chronic Illness in the framework of the stages of grief we’ll now look at the last stage which is Acceptance.

Accepting a chronic illness can take a long time. You may switch back and forth between the other stages even after you’ve reached acceptance. I do that quite often. Although I have accepted my health condition and can honestly say that it has been a blessing to me, I still get angry and depressed at times. That happens when I have a flare up or learn that my condition is getting worse for example. Sometimes it gets so that I want to pack up my Zero Halliburton luggage and run away. But what good would that do?

If you are seeking acceptance then you’re doing the right thing! If you realize that the other stages are keeping you stuck, you’ve made your first step. I’ll post more about how to reach acceptance in another post, so please stay tuned.

Please feel free to comment here about how you’re doing on your road to acceptance. I’d be happy to use your story of acceptance in my next blog post.

This is a continuing series which began with this post about the stages of grief and continued with a post on “Denial” , “Anger“ and “Bargaining“. Looking at the diagnosis of a Chronic Illness in the framework of the stages of grief we’ll now look at the fourth stage, Depression.

Depression is very common with all types of chronic illness. There is so much loss and grief associated with having a life long illness that can either totally change your life or create some kind of life altering situations.

For example, with me when I was diagnosed with one chronic illness it was bad enough, then to learn that I had more along the way made me very depressed. I also was very sad when I had to stop working.

I felt worthless, apathetic and unable to function as a parent or as a wife. I was hanging on to what I thought was important, my “old life” instead of moving forward and trying to find ways to cope.

Finally I sought help from a psychiatrist who helped me to realize that I was indeed depressed and it was normal. I began to take anti-depressants and go to counseling. I also sought the help of my Pastor and began to pray and read the Bible again.

I learned that I am still the same person inside, that my perfectionism only hurt me, that I needed to find something meaningful to do with my mind and my time and that if I began to feel more depressed at certain times that it was normal.

Now I find that if I get a bad report from a doctor that sometimes I get sad. If I have a flare-up, especially one that keeps me from doing the things I’m used to doing sometimes I begin to feel sorry for myself.

I’ve also learned that when I write, or help others, or take part in activities that I feel better. The simple things in life make me happy now. I love to look out my window and watch the birds. I am more aware of my daughters’ smiles and hugs and want more of them!

It used to be that money was important, that my needs included things beyond my family’s budget like Chevy grilles, expensive vacations or nice clothing. Now as long as I have my family and friends with me and my faith all is good.

Please see a doctor if your sadness is overwhelming, if you can’t see any hope and especially if you are thinking about suicide. There is help and it’s yours for the asking.

I wanted to do this post before beginning my series on the stages of grief. This is something I want to share to show that life does indeed go on and does so successfully even with multiple chronic illnesses.

I have been blessed with a loving and caring family, friends and church family. Some of my friends are from the internet, either from blogging or from forums or groups.

Although I have had rough times with my health and of course still do, I know that I can call on these people for help. All I need to do is ask for a favor and do it without any feelings of guilt. When I’m not down and out I can try to return the favor. If I can’t exactly return it I can pray for them, or call them to lift their spirits if they’re feeling down, etc.

Having love in my life is one of the most important things I need. My babydolls are there for me and show me care and concern that money can’t buy. God has truly blessed me.

Many people with a chronic illness spend a lot of time at doctors’ offices, labs, hospitals and at home, sometimes in bed not feeling well. I often feel that my life is all about the medical stuff. When someone invites me to a party or lunch I have to check my calendar to see if I can fit it in with all of the blood tests, doctor visits, etc. It gets frustrating pretty fast.

It’s very important then to take time for just you - to do something you enjoy, to relax, to feel pampered. I try every day to set aside an hour when I can read my Bible and pray. This is my quiet time.

I get my hair cut once a month and enjoy the time with my hairdresser. We chat and laugh. She knows just how I like my hair so I can sit back and let take care of me without any worries. I always have her wash my hair because that’s so relaxing to me.

Once a month I try to get together with friends to go out to lunch. We call this our “Diner’s club”. It doesn’t have to be anything expensive, just a new place each time.

If you’re feeling too sick to get out of the house, why not set the mood there? If you like to relax with music, put some on and light some candles. Call in for a meal, even if it’s pizza (get some extra toppings!).

You don’t have to be extravagant, like buying yourself luxury watches or expensive purses every month. Frugal is good too.

Just know that you deserve some pampering. It will lift your spirits and help you to cope with all of the other issues more easily.