Saturday, September 7, 2013
As with most of the important areas in my life, both good and bad, I believe in getting as much information as possible about the subject. I have never been afraid of asking for help, both from friends and professionals. So it shouldn't be a surprise that when I was diagnosed with PH that I would look for help. My first stop was the Pulmonary Hypertension Association (PHA). They sent me out a packet called an envelope of hope (remember, hope is my new word for the year). It was so helpful. The first words I read were "a diagnosis of PH is not a death sentence". They talked about the fact that there were many treatments that while they don't cure PH, they certainly work to extend your life. I get a newsletter from PHA. I was interested in the following article: new PH drug . This drug is the first specifically made to treat Chronic Thromboembolic Pulmonary Hypertension (CTEPH) which is the kind of PH I have. A decision on this drug is expected in October. You can bet if it is approved I will be the first one at my doctor's office asking about it. I was also interested in the fact that a representative from Texas in the Senate, Rep. Kevin Brady, sent a letter of support to Congress about a possible bill on PH. Bill in Congress So there is much to be excited about. On the weight front, I lost 7 pounds in the past 10+ days since I started WW again. It felt good to see the numbers going down. My goal is a total of 15 pounds by Sept. 16 when I see my doctor again. The meds continue to help me with my stamina (another key word in my vocabulary these days). I am feeling better than I have in some time. Thanks again for the continued words of support and prayers.
Posted by Donna at 10:44 AM
Saturday, August 31, 2013
Each day I wash my face and put on some stuff called Hope in a Jar by philosophy. I am not sure it is doing any good, but I keep doing it. When I put on my make up I pondered over the name. Hope in a Jar. Hope. What a powerful word! Hope keeps us going each day. Hope that today will be better than yesterday. Hope that we will have lots of tomorrows. Hope in an everlasting life after this life. This year, instead of resolutions, I chose a word for the year. My word was joy. Joy, joy, joy! Joy in my heart, joy in my soul. Little did I know what this year would hold for me. I have had lots of joy and some sorrow also. But a new word has emerged. Hope. Not in a jar, but in life! Hope that I have many years ahead of me. Hope that during those years I will be alive and living, not just alive. Hope that I can enjoy everything life has. Hope that my family and I can spend time together loving each other. Hope that God has some very special plans for me. Hope and joy. Two powerful words. Combine them and all kinds of things can happen. Here is to hoping you have some joy in your life today!
Posted by Donna at 10:33 AM
Saturday, August 24, 2013
My new word for the year is Stamina. Since they told me my breathing won't get much better, I am working on my stamina. Trying to keep mobile without being dependant on oxygen. I will say the new meds have definitely helped. They are getting fluid off my heart and my lungs. The B/P meds are lowering my extremely high blood pressure and helping also. We have a plan of action to keep me going as long as we can. Exercise and a new diet plan. Get as much of this weight off as possible. Today I joined the YMCA (thanks Mom for helping me with it!) and my sister joined also. She has been a great support and I really appreciate her. They have arthritis association approved water aerobics on Monday and Wednesday evenings that I will be participating in. Getting to the pool proved to be quite a challenge. It is completely on the other side of the building from where you come in. There are not one, but two ramps you have to walk up to get to it. I will be using my walker to help me so I can sit and catch my breath if needed. And I made a meal plan. I pretty much know the WW plan like the back of my hand so I am doing what worked in the past. This weekend I will be cooking and preparing meals to take with me to work next week. And as I prepare my meals during the week, I will be freezing the leftovers to use the next week. Lots of fresh fruits and veggies. Buying fresh, not already prepared, meals is expensive. We spent over $500 for two weeks today (this includes the containers for the foods, new spices, bathroom/household stuff & a new individual blender to make smoothies in). Usually we spend around $150-$200 a week, so for two weeks with all the extras it was about $100 more. I have had great support from all my family, esp. my husband James and from my work friends, not to mention all my FB and other friends. It really helps to know I have been and continue to be prayed for. I know God has a plan for me. And I know He isn't going to let me go anywhere any time soon. This is just a left turn on my journey of life.
Posted by Donna at 1:24 PM
Tuesday, August 20, 2013
Wow! Cannot believe it has been 2 years since I last blogged. Boy has my life changed since then! For one, I don't stitch anymore. It got to a point where I had no more wall space and no one to give my stitching to, except maybe the occasional wedding or baby gift. And I stopped enjoying it. I got more into gardening, but since I don't have a large area to garden in I was doing my garden in pots. Not very successful, but still gave me the opportunity to play in dirt. I still work for Carter BloodCare and am now the Admin Asst. to the executive director here. I am also in charge of scheduling our mobile staff. It is a wonderful job and I really enjoy it. Facebook has been my link to "the rest of the world". And while that is fun, I really miss blogging. So here I am. Let me show you some updated photos. First is a picture of the family, minus my husband, last summer. It was a celebration of birthdays and a rare time we have everyone together, including mom.
Posted by Donna at 9:48 AM