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New to this community, LONG post! I AM SORRY!

Jul 19, 2016 5:55 AM

Hi there! I'm new to the pain companion community, my name is Ashley but you can call me Delilah. I have a genetic disorder called Neurofibromatosis(or NF for short) there are actually three types of NF there's NF type one NF type two and the third type is called Schwannomatosis, I have type one which is the most common type and Schwannomatosis is the rarest. To learn about Neurofibromatosis I highly suggest googling it or going to www.ctf.org
also have secondary adrenal insufficiency,hypothyroidism,GERD,iron deficient anemia(recently diagnosed), scoliosis,hip dysplasia,depression. I recently had quite a scare and my hemoglobin was 2.9 on May 24th 2.9 is life threateningly low. My mom and I were at my physical and we were about to leave and I had labs draw before my physical and my physician had added an iron and hemoglobin as she was concerned about how pale I was and that I was craving crushed ice. So my mom and I are chatting outside the exam room and my physician comes jogging up to us and tells us I need to go to the hospital right away, so to make a long story short I was admitted to our local hospital(which is 5 minutes from home) right after they started my first of four units of blood so I'm in my hospital room with my nurse and my parents who are sitting on my right side and the blood has just started going into my body and all of the sudden I go into tachycardia and my blood pressure starts to bottom out, my nurse acts right away and calls of the hospitalist on call for that floor, he comes in and orders Tylenol and Benadryl and I say that I can't have Tylenol because it kills my stomach so he says okay and to just give me the benadryl(this was in case I was having an allergic reaction to the blood) he also says to increase the rate so that the blood went in faster well my poor parents are freaking out on the inside but oddly I only feel slightly worried but only for a few minutes then for the rest of this episode I feel peace I just feel whole I don't know how to explain it but I wasn't scared. after they increased the rate of how fast the blood went in I began to stablize I came out of tachycardia and although it took some time my blood pressure went back up to its normal range. I went home the next afternoon and during my episode my parents truly believed and thought that I was going to go into cardiac arrest and later on I was placed on a wireless heart monitor while I had my transfusion. We don't know if I'm bleeding somewhere or what and I've had an endoscopy that came back fine other than that they had to remove a benign polyp, the things they tested for on the tissue they biopsied came back negative and all my blood draws have shown that my iron has gone up and so has my hemoglobin. Last time both were checked my iron was at 4% which is extremely low but a lot better than 1% and my hemoglobin is 8.8 when I was discharged on May 25th it was 7.0 and on June 8th it was 8.4 and in late June it was and as far as I know is still at 8.8, I'm supposed to have iron infusions and one appointment has already come and gone but I did not have my first infusion as they were unable to get an IVin me, my next one is July 21st and the first one was like the 7th it was the Thursday after 4th of July and they tried 5 times that day and I said I'd try on eat this next infusion but I only said it to make everybody happy when in reality I just cannot go through that pain again so I'm going to talk to my hematologist at this next appointment, he actually said that I may need a PICC line but unfortunately a PICC line is not an option for me because I have inumerable tumors in my body and placing a line would either be very difficult and would aggravate the tumors in my arm causing me to be in a lot of pain and you have to keep it covered with that adhesive dressing 24/7 and my skin tears easily and is extremely sensitive so I will be asking about a port. Anyway back to my chronic pain, lately I've been in excruciating pain as my legs have been hurting really badly my right knee and my hips and lower back have been hurting too, my mom talked to my pain specialist and we are increasing my gabapentin and we are going back to an as needed medication that doesn't work long for me but I'm willing to try it again and I'm also now supposed to take two 50mg Tramadol every 6 hours. If the as needed medicine fails or I get the cranky side effect again I will be switching to something else. Well that's about it! I apologize for the really long post butt will help you all better understand me and my crazy life. Have a good day or night!

Jul 19, 2016 9:43 AM

You have had quite the adventures. I'm sorry. Welcome.

Jul 19, 2016 4:10 PM

Welcome to our community family Delilah2520! I'm sorry to hear all you have had to go through. Don't feel a need to apologize for the long post. It actually helps others to know you. Unfortunately for me, with my memory/dementia issues I struggle to remember who has what. So please don't feel offended if I duplicate questions. I do that with my family daily...lol! We are a pretty diverse group, in age, diagnoses, and where we live. But you will find lots of support and suggestions here. We all understand chronic pain and no one treatment methods works for everyone. Listen to your body to identify it's needs, be it rest, for, exercise, or solitude. Peace your activities and rest periods so hopefully you won't overdo it. Sending hugs & saying prayers you'll be back home from the hospital soon! 🙂💕🙏🌸

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