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MeganMN

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About MeganMN

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  1. Hello gang! I have been off the radar for a bit but feel like many of you are in my circle of support. I am continuing to get worked up for both Carcinoid Syndrome, Neuro endocrine tumor, and either normal calcium hyperparathyroid or secondary hyperparathyroid from low Vitamin D. I am waiting for an appointment at Mayo with an Endocrinologist and have been going to the U of MN for endocrinology. I do not have much tachycardia randomly these days, it coincides more with other episodes of flushing. I am less tired with iron and Vitamin D but continue to struggle. I think of all of you often and hope everyone is chin up!
  2. 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.
  3. Update...went to the University of Minnesota today for my visit with Endocrinology. She was super nice and super smart. Frustrating nonetheless though because of the time frame. She did confirm that she is officially diagnosing me with Carcinoid Syndrome and may end up treating me even though they cannot find the source. At this point, she thinks my parathyroid issues are related to the Vitamin D and wants to just recheck everything in two months. She basically said that there is a high probability of a carcinoid, and finding them can be pretty tough. She said that she is still on the fence about the parathyroid and will recheck labs today and again in two months. For now, we watch and wait, and I pretend that I am not running on empty!
  4. @nik1980 yes- exactly what you said!! I have been getting more and more exhausted. Thankful for this group where I can whine un-judged!
  5. thanks @bombsh3ll! Two more days until we go down to the University of Minnesota. Feeling exponentially worse since Vitamin D supplementation. I am getting a 24 hour urine calcium today and I suspect my serum calcium will be higher now. I have no idea what to expect. They will have to redo all the labs after my D comes up, I am sure. But really, I have no idea what to expect! this has all been so crazy. Will keep you posted!
  6. Well, the saga continues. I see the NeuroEndocrine Specialist on May 21st and in the meantime, my Parathyroid Level came back a second time super high, but normal calcium, slightly low Vitamin D. Am adding Vitamin D Supplements. This is all just such a weird thing....
  7. Hey gang, Wanted to ask about a weird symptom set that I have been having. Intermittently for the last year or so, I have been waking up in the middle of the night with a weird symptom set and wondered if anyone else experienced it. I wake up with a start with tachycardia. It almost feels like a panic attack but it wakes me from a sound sleep. I get tachycardia, shortness of breath, epigastric pain. Then I eat some TUMS or Mylanta, and have diarrhea (no cramping) then all the symptoms slowly subside. Weird. Just wondering.
  8. Thanks to everyone for your wonderful words! Sometimes it helps just to be able to vent it out there. Counting down the days until I see the Specialist. At this point, I am receiving no medications for anything, because no one knows what they are treating. But man, I am TIRED!! Thanks everyone!
  9. thanks for the replies! My husband and I are trying to figure out what to do. I am beginning to get concerned because my fatigue and brain fogginess is definitely affecting my job. But I am the only one working right now and my husband cannot make more than maybe 25% of what I make as a nurse. On top of that, my job does not offer any short or long term disability! Right now though, I feel like I may be in danger of getting super sick. So, we are trying to come up with a plan. Just feeling like my mental state has taken a huge dive with all of this. I am so tired. Everything that I usually maintain is falling apart.
  10. Ugh. I am at a serious low spot in this journey. Thought I was there already, but so much worse. Things have just gotten so messy with all of this medical testing and appointments and kids and marriage and work and LIFE! Going down to the U of MN to see a neuroendocrinologist in two weeks. Feeling worn out and jaded, hoping for answers, but tired of just getting more questions. My adrenal function is in question, my parathyroid function is in question, and I am TIRED. That is really the crux of it all. I am totally losing the ability to function. It feels scary. So much about all of this is scary, for so many of us. We are all at different places in the grieving process and right now I am low. If I had some Energy, that would help!
  11. We can definitely get in to Mayo, but insurance is tricky. Right now trying to decide on The U of Minn health system in network or Mayo out of network. Anyone else on here have hyperparathyroid?
  12. Feeling frustrated. Spent money we didn't have to put the kids in daycare, drove 3 hours one way to see what we thought was a specialist for neuroendocrine oncology. Drove around crazy Minneapolis. Got to appointment and met a really nice doctor who politely told us my symptoms most definitely are consistent with Serotonin release, possible endocrine syndrome, and said he cannot help and we need a NeuroEndocrinologist. Nice....thanks for telling me what I already knew....did say if I get no concrete plans from Endo, he can trial the Octreotide. Anyone know who to see in Minnesota for Endocrinology?
  13. Dr called tonight and said they found something on my parathyroid and my parathyroid hormone was high.. Interesting. There is definitely some relief that they found something.....we go Monday to Abbott in Minneapolis to see the specialist...apparently the carcinomas tumors can secrete parathyroid hormone as well.
  14. Today I was thinking about one of the things that I struggle with the most with this diagnosis. I am super thankful and blessed to have good days, but I constantly find myself trying to talk myself out of what I really need to accept. Yesterday I was able to go for a bike ride with my family (win). I was dizzy and had a headache, but I went! Today, despite many medical tests and being up all night with a sick child, after a nap, we went for a walk together around our land (win). I am now on the couch with a terrible headache, but I went! I find that when I have good days, I try to pretend that none of the reality of this diagnosis is real. Then I get dizzy, or a headahce, or tachycardia, or whatever, and I remember, nope, this is real. Sometimes I feel like it would be better to have some illness that was more concrete. POTS is so ambiguous, so vague, and so debilitating, but sometimes.not at all! it is tricky.
  15. Thank you @bombsh3ll . I felt super overwhelmed this week. We went from testing a couple of things over the course of a few weeks to ordering all these labs on Wednesday, three scans tomorrow, and an Oncologist on Monday. Thing suddenly became very real. I am amazed at how many people I have chatted with online that have Carcinoid and POTS. Interesting connection. The body is fascinating. thank you for the support!
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