Hope in Springtime....

[MeganMN]

This is going to be a long post, but it is something that I feel like I need to say. Tonight we had a camp fire in the back yard. My seven year old brought me flowers. I played frisbee with my husband and laughed like I have not laughed all winter. My three year old sat on my lap while I braided flowers into her hair. My five year old rolled down the hill in a toy shopping cart while we all watched with happy hearts. This is what life is. This is what I want to be engulfed by. 
Instead, the pause button hit last November when my mom died the same day that my body began to fall apart. First I was diagnosed with inappropriate tachycardia, thn with possible carcinoid tumor, now Carcinoid syndrome, and a side of hyperparathyroidism. Doctor after doctor after test after test. Research and forums and Internet and so....many.....ologists..... Cardiologist, Neurologist, Oncologist, Endocrinologist, Gastroenterologist, Pulmonologist.  What they all forgot about... The LifeOlogist. My life continued on. My kids keep growing and needing and loving and living. My husband keeps needing and loving and living and being by my side. My job, my family, my church, my friends. They kept moving and I suddenly stood VERY still. 
I became an expert on HIAA and Chromogranin and PTH and Calcium and NET and Gallium and anxiety and depression and fear.... But tonight, sitting by the fire, I realied that none of this defines me.  It certainly limits me. It makes me tired. It makes me afraid. But it IS NOT me. I am a mother, a wife, a nurse, a friend, a reader, a gardner, a daughter, a sister, and I am alive and thankful to be!  this IS what the doctors forget. They forget to tell us how to go on with some diagnosis that may not be fixed with a cast, or a surgery, or a pill. It may force us to accept a new normal. But it doesn't have to define us. 
For the first time since last November, my life continued to play with me in the frame, instead of watching from the sidelines while the scenes played on without me.  These are the things I will talk about when I go to the doctor. Okay, my labs showed this or that, and you think this or that, but tell me how to keep LIVING and LOVING. That is what I care about doctor... So when you tell me you will see me again in 3 months or 6 months, or whatever, I will tell you to explain to me how to watch my life go by while the pause button is on. Or, better yet, you can put your head together with me, and help me figure out how to make the best of this crappy disease and LIVE.  
 

[statesof]

Right on.

Earlier in my illness when I was still doing the circuit of doctors and waiting for 'the one' that would actually find the exact thing to fix in me and make me back to normal again, I only had one person in my life that said 'you keep waiting, but you might never get better' and I think at the time I needed that because I, and everyone else around me, was looking for 'the answer' and in all of the doing it felt like that was my version of trying to live -- but your right I was pushing a pause button while everyone else continued to live around me. And though I think that having that pause may be necessary in the beginning because I had to learn the limitations of my new body and feel awful because of it, it is easy to exist in a chronic illness instead of live.

Jump 5 years later and I never got better; I have been able to find some physical things I was not aware I could do at the beginning of my illness so it feels like I've got that back, and I was able to get a wheelchair that allows me to do more than I did in the 4 years before when I got sick -- going out with friends, taking my dog to the park, going to the botanical gardens, traveling within the US. Many of these things were dead simple and took no effort at all when I was well but they were impossible for me to do when I got sick, or somewhat possible but always included a lot of physical suffering. And now even though life is quite a bit different, it can still be quite good.

[Pistol]

@MeganMN - WELCOME!!! Getting to that realization is part of acceptance. When you find out that you CAN go on DESPITE of POTS, that there is still so much life to be lived- just different. Years ago I pushed myself to play 2 minutes of badminton with my nagging daughter and it was 2 minutes of bliss. Afterwards I paid for it but it is still a wonderful memory for me. So is being able to attend her dance recital last Sunday. ----- What I have learned is to go on with these symptoms you must cut down on the things that you can live without - in my case it was my job. I was no longer going on working but short-cutting my family. I have been fully disabled for 6 years nd have been able to give what energy I have to my husband and daughter.  Most limitations remain but I can be the best wife and mother I can be to them. THAT is my treatment of a chronic, incurable condition: live life to the best of your abilities. 

Regarding the specialists: I was told ( nicely by some and rudely by others ) that I will have this forever, there is no cure and I have to learn to live with it. That was the general consensus. I cried to my wonderful PCP ( best doc in the universe ) and said: but HOW? How can I live like that when there is so much I cannot do? His advice: find out what you must do, what you can do and what you want to do. Then let others deal with the rest. I determined these priorities and everything else has to take the backburner most times, and that is how I can go on without constantly thinking that I should do or be better. 

I hope you will find answers soon - in your case you might be able to find treatment and I truly hope that for you. Best wishes!!!!!