Every once in a while something happens in my life I need to talk about and share.
After 46 years of not me not knowing, my doctor finally told me what is wrong with my legs. I have PVD. Well, Friends, I wasn’t sure whether to laugh or cry.
Get this I’ve had this crushing pain, sometimes sharp debilitating pain since I was about 8 or 9 years old. The first doctor my parents took me too told them that I would grow out of it. That it was just growing pains.
In my early teens I lost weight, like many do, I did it through running. I ran until it hurt and the pain was so bad I couldn’t stand it. I couldn’t sustain the exercise; I couldn’t stay on the 400 calorie a day diet I needed to keep the weight off if I didn’t exercise. Over the years in spite of the pain I’ve managed to do everything I’ve wanted, at least long enough to get experience. And always the pain was there. I never knew a time without it. I had to give up riding because of it. I was harassed and verbally abused through most of my life when pain stopped me from doing anything. Everyone said I was just making excuses or that I was lazy and obstructive.
In the 1980s they tried to tell me that I was depressed and had fibromyalgia. They sent me to a focus group. Talk about depressing. I had nothing in common with any one there and our symptoms weren’t even the same. I knew I didn’t have it. But try to convince doctors of that! I was undaunted.
So I learned not to complain and not to show how much it hurt. In the 1990s I did race course photography and prayed that the days would be cool or freezing as it was easier to walk when it was. When I could afford it I would take 8 weeks of intense water physical therapy at the local sports medicine place. ( The Washington Football team use to send injured players there as did the regional TB track.) The strength helped my circulation and cut down on the inflammation so I could walk the distances required for a course photographer at a hunt meet or steeplechase meet. However there were days that the pain was so bad that I couldn’t manage it. I had to come home lay down put my feet up and ice my legs on those debilitating days.
I’ve never been able to be dependable because I’ve never been able to know when I would have a good or bad day. Holding down a full time job was nearly impossible. You can’t work and stand on demand if you have pain like this. I did what I could. Yet still I miss out on so much. People in general are not sympathetic to someone they think is just fat and lazy, even doctors who should know better.
I’ve been self employed for years , for better or for worse, because of this pain. And I have been horridly stereotyped. Right now I’m relieved and angry and sad and happy all at the same time. Finally someone told me what was wrong with me. I have had the symptoms of Peripheral Vascular Disease literally for 46 years at least. And yes it’s as scary as it sounds.
So what was mine caused by? Two things are the most probable causes, second hand smoke from the time I lived with my mom’s parents as a small child and genetics. The genetics came from my dad’s side of the family. They had lots of inherited propensity for enlarged inflamed veins and phlebitis.
Unfortunately, not knowing what I had I probably added to the condition for those few brief years that I smoked in college and later as an adult.
What does the Bible Say? “My people perish for lack of knowledge (wisdom).” I had all these doctors over the years that could have told me what it was, but not one ever did, well, until today.
So I’ve had my 5 minutes of anger today and shed a few tears over the needless additional pain I have suffered. These emotions were not so much aimed at the health care professionals that simply never told me or missed the diagnosis entirely. My anger was over the years and decades of physiological abuse and guilt I have suffered in silence, because of the pain I had to hide. I admit it, I was devastated when I had to give up my horses years ago. But anyone who knew me then will tell you there were days I could barely walk.
I missed out on social events and business opportunities too numerous to count due to this condition. And dating… how could you reasonably expect to date someone when you had no control over when or how bad it was going to be.. and keep it hidden. I wasn’t about to tell some likely candidate I had chronic pain, because, as I was told so often, “no one wants to be with someone who is dependent and ill all the time. “
Yet, had I known and known how it could be treated, I would still have horses. And when people needed to know I could have told them I have PVD, I need reasonable accommodation. I wouldn’t have felt a bit bad about it or humiliated.
Well the joke is on the powers that be who thought they were going to keep me down over this one. Because “evil bubba” I can still paint from bed. Na Na. And… I can do all things through Christ who strengthens me!
My Advice to all my friends Please, Please, Please! If your children or grandchildren are living in the house with you, stop smoking now. If you are way past being able to stop, then smoke outside and never in front of any child under the age of 12. And especially around any children under 8 in a closed in space.
If your children are complaining about being tired and having leg pain, take it seriously. A child that is in pain isn’t going to exercise and that leads to all sorts of health issues. Juvenal on set PVD can cause obesity as well as being caused by obesity. I’m not kidding. Don’t let any doctor tell you the pain will just go away as they grow up. There are ways you can find out if the vascular system is inflamed and compromised before it starts affecting the heart and lungs. You have options!
6 comments:
(((hugs))) Praying for you! Glad you shared and I hope it makes someone stop smoking!!! God bless!
Linda, I admire your courage and strength. You have suffered all your life and still have the Love of Christ. You have earned many crowns in this life and I may not meet you in this life due to distance, but I look forward to meeting you, my sister in Christ, one day when we are all united with our King. God Bless you and I will keep you in prayer. Love, Jeanne Hummel
Wow Linda! What a blessing that you finally know! Thanks for sharing this! Much Love and Prayers my friend! Jennifer
Thank you all for your kind comments. Blessings to you as well my friends. =0)
Hi Linda, wow that is a powerful life story. Blew me away. I will say a prayer for you. Somehow you have been able to look at things from a positive aspect now matter the paint. You are so very talented. I am not sure how you move forward with treatment but Dr. James Black is a wonderful(!) Vascular surgeon at Johns Hopkins if you should seek another opinion or treatment. He helped my husband and is available in their outpatient center. God be with you always, Joanne
Thank you for your kind words Jo. I still haven't figured this all out yet. Its been a very challenging Summer. I've had a lot of days, because of the extreme heat, that I just couldn't go out. I'm going back to my dr soon and tell them what I tried and how it worked or didn't. I do hope I can adapt soon. I have horses to paint. ;0)
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