March 3-April 27, 2014
My truth shared: I have been dealing with chronic pain for some time now – for many months. I have felt some guilt because I still have pain after trying everything suggested by my doctors. I feel like because I have had all the surgeries, doctors may see me as the person who “should” be healed and pain free. There has just been so much pressure to “get better” and it feels like some think getting better is a matter of mind over body; as if I can think my pain way. Some may feel having pain and discussing it is “complaining” or “being negative.” I’m not a big fan of how some of the medical community or others view pain as if “someone is weak or not trying hard enough,” when living with chronic pain actually takes a good amount of strength and willpower. Pain is VERY real and can be extremely debilitating. It is frustrating because my condition has no cure and is believed to be progressive. This is not something I have control over. It is not something that will just get better with time. So I guess one might understand my unwillingness to share all the details of my health. I fear being judged or looked down on because of the position of my health. Part of me became afraid to tell anyone just how much I was, and have been suffering. I didn’t want people to worry about me, nor did I want to feel like I was letting my doctors down. Also, I don’t want others to lose hope in finding treatment for themselves because of the status of my own health. I want to encourage others and send positive messages. Part of me felt I just needed to try to cope with it and maybe I was in denial about how bad my pain actually was.
Every time my nurse or husband would ask my pain level, I would always answer with saying it was at a 6 or higher. And this went on for months. My family would point out when I was having breakthrough pain because I would be whimpering and making sounds when I would breathe. I guess I just felt like 6 was as good as it could get. I have many allergies to many medications and the ones I am not allergic to, well they just really never helped much. So, I just learned to live with it. I felt I was coping with pain. But in truth, my pain was beyond what I would allow others to see.
I usually try to ignore my pain, but when I find myself crying, unable to stand up straight, too weak to walk and breathing becomes unbearable…that is when it is clear to me my pain is out of control. Feb, I spent a month with my pain level staying at 8-10. I was not really able to eat and getting fluids down was very hard. I was having problems with getting my medications stuck in my throat. My leg muscles pretty much stopped working. I was very weak, dizzy and had nausea. I was VERY worried about my health. My home nurse was pretty worried too. She was the one who told me I needed to address my pain with my doctors and find a better plan of action. I felt a bit defeated because part of me felt maybe if I just tried not to think about my pain, it would go away in time, or maybe I could learn to live with it as I already had been doing for years now. But, it had gotten so severe I was no long able to function and had no quality of life anymore. So, the other part of me felt thankful for my home nurse who told me I had options and that I could receive better treatment to help with controlling my pain. She also sent a medical social worker out to talk to me about my pain, and to help me deal with my feelings about my failing health. I am so thankful for my home nurse for nudging me in the right direction.
I talked with my GI doctor about everything going on. He seemed a bit unsure why or what to do. I felt maybe I needed TPN at that point, but he was worried about my organs failing if we did that. I had lost 10 pounds in 1 month at that point and was going down hill fast. He did order a nerve block, which I did. It did not help my pain. I also did an EGD like he requested. I saw my heart doctor a few days later and told him about my ongoing problems with my pain and how it was causing my blood pressure to be less stable. He agreed and felt something had to be done. His nurse even spent some time talking to me about hospice options if things were to stay the same or if they were to get worse. It was a hard time for me. But my heart doctor came up with a new plan of action for me…and would you believe it…it has helped. Sadly, a month later my heart doctor who has been my doctor since 2010, is now retiring to care for a family member. And I truly believe if it weren’t for him, I would not still be here. He truly cared about me and not just as a patient, but as a person. I will always be thankful for him giving me a chance at life. So, as for now my internist has taken over most of my care, but he is helping me with trying to find a new heart doctor. I love my internist because he has never judged me and has always treated me like a person. He truly listens and has a good knowledge of many different conditions, which is nice because with him it never feels like I have to spend my time trying to “prove” myself. He gets it, and sees the whole picture and explains that, yes…he can see why I would be having so much pain. And he never has made me feel bad about myself. He makes me feel like I am strong and brave for surviving and overcoming as much as I have.
So the great news, the last month I have been having some really great days. Since starting my new medication, I have felt more like my old self. I have been having more days of being able to walk without a cane and I have been able to enjoy more time with family and friends. I can have a conversation now without forcing myself to hide my pain. Now I can stand up straight and truly enjoy the people around me. I am not spending EVERY day in bed. I do want to state I understand that I have not been cured, and know I am not perfect. This is not a cure, only something to help manage things for the time being. And I have no clue how long this will last. I still have days were I have my downs and days I need to rest all day. My eating is still not the best. I can only eat small amounts, still get nausea and some breakthrough pain. Still having random low sugars and paralysis attacks. BUT, I feel like I am at least stable right now and I am feeling very, very thankful. My joint, muscle and abdomen pain are so much more controlled. I believe this is just about as good as it can get and I am so happy to be alive. So, I want to thank everyone who has been pulling for me and praying and thinking of me. Because without you…I would not have had the strength to fight as hard as I have been. Finally the pages are turning and the sun is out. A smile on my face and enjoying the world around me.