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lorrie

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  1. Well, my trip to Mayo was very nice. I had a wonderful experience as far as they were extremely organized and I hardly had to wait at all for my appointments. Everyone was very nice and helpful. The doctors seemed very interested in what I had to say and they all spent lots of time with me. However, I am now more confused about my health. After having a POTS diagnosis for over a year, I was told I do NOT have POTS...I was diagnosed with Mastocytosis!! They also found a spot on my lung that they were pretty sure was cancer, but after a PET scan, they think it is Hystoplasmosis. They found a bleeding disorder in my bladder and a prolapse in my rectum. They turned up problems I didn't even know I had... I was told I have some orthostatic intolerance, but not POTS...I had two different tilt table tests...a 1 hour one and a 10 minute one. I got sicker with the shorter one. I go back to Mayo in June for a follow up on the lung and will see a Mastocytosis specialist at that time. The nurse practitioner will be calling me with info. on treatment between now and then. I don't regret going because I did get some good information. I just feel more confused than ever...it is hard to change gears when I thought I knew what I was dealing with.
  2. I have waited so long for my appointment at Mayo and it if finally almost here. I leave one week from Saturday!! I am excited and hopeful to get some good, useful information. I am also getting nervous about some of the tests they have scheduled. Most of all, I am upset because I got a new schedule in the mail today and I have been changed from an appointment with Dr. Low to Dr. Sandroni. I really wanted to see Dr. Low because I have heard great things about him. I pray that Dr. Sandroni is just as good. It sounds like Ernie is having to wait a couple of weeks to get news...I was hoping to know something BEFORE I leave Minnesota. I am busy getting things ready for the 12 hour trip to make it as comfortable as I can. Do any of you have any traveling tips? I have not traveled this far since becoming sick. We are stopping 1/2 way and staying overnight to keep it from being as hard for me. Riding is very hard on my various pain points. My doctor refused to let me fly because I pass out so often. He said I would be miserable and the flight crew would get all overly excited if I passed out on the plane. I wouldn't want to be the cause of an emergency landing...lol
  3. I was happy to see you posting. I have wondered many times how you were doing. Good news is always great to hear!! I'm so happy you are having a positive response to the therapy.
  4. For many many years now, I have had a very frustrating symptom. I would say that at least 95% of the time I feel like I have a volcano inside my body. I begin feeling so hot from deep inside and it doesn't matter what the room temperature is. Co-workers, family and friends absolutely don't understand me. I wear short sleeve tops all year round because I am naturally hot natured, but this is different. The worst part of it is that I begin coughing when this happens. I really have trouble at church because of this. I start getting that hot feeling and start coughing and can't stop. I actually have had to get up and go home in the middle of church because I can't stop coughing. I also do this at work and people always start tossing cough drops, peppermints, bottled water my way thinking it is a scratchy throat...it never helps. I can't stop coughing until I cool off. The weird thing is that I don't sweat...I just feel hot inside. The only time I sweat is when I have a POTS episode and pass out. I sweat excessively then. You would think that I would cough in hot weather, but I don't. I can be outside when it is in the 90's and never cough. I can even handle hot weather temperatures pretty well. I just have this problem with inside hot feelings. Do any of you do this? I sometimes feel crazy because I don't know anyone else who does this. Thanks for your replies.
  5. Please let us know as soon as you get home...I can't wait to hear about your experience. I hope you have a wonderful trip and gets lots of answers you are looking for. I leave for Mayo on March 6...can't wait to get there!! Hugs to you.
  6. Today started very badly...I woke with a horrible headache and have been dizzy and sick all day. I was feeling so guilty because today is my Anniversary and I knew I wouldn't feel like going anywhere for dinner with my husband like he had planned. I had also planned to bake heart shaped cookies with my daughter because she wanted to surprise her daddy with them. Instead I found myself needing to lie down and feeling like a horrible mom/wife. Well, my daughter who is 9 is very protective of me and my feelings. She must have sensed that I was feeling down and guilty because she secretly called my mom and asked her to come to our house. When my mother got here, they insisted I take a nap. While I was sleeping, they baked the cookies and went shopping. They came home with flowers, candles and dinner from a restaurant. They decorated the dining room and had it looking very romantic. My husband came home from work with roses for me and balloons and a stuffed puppy for my daughter. I woke up to the laughter of my sweet family coming from the dining room. I was so surprised when I walked in and saw all the festive decorations and my precious daughter standing there smiling at me. She had cooked all this up for me to be able to celebrate my Anniversary right here at home. I was so touched...I hugged her tight and kissed her forehead and felt so blessed to know she could be so understanding and unselfish at such a young age. She even asked her grandma if she could spend the night at her house so my husband and I could eat alone and talk. It turned out to be the best Anniversary we have ever had and I have the most special Valentine ever...my daughter!!
  7. I went to an ER with severe chest pains and the doctor (who didn't know anything about POTS) said I was having stomach problems and the next thing I know, a nurse was holding out a cup of liquid and told me to drink it. She said it was a "Mylanta cocktail". I thought it was strange to be drinking Mylanta, but did it anyway...little did I know it was mixed with lidocaine!!! I have had previous poor reactions to topical lidocaine. First off, I didn't know you could ingest lidocaine and the taste of it mixed with the Mylanta was horrid. Secondly, they did not make me aware BEFORE I drank it that I was drinking lidocaine. Well, as you can imagine, I had an awful reaction to it. I vomited over and over for hours and my tachy was off the chain. I could hardly stay on the bed I was shaking so badly. My whole body was reacting. The doctor said it couldn't be the lidocaine and said I was just being "dramatic"... he almost got to see some drama when my husband followed him out to the hall and demanded he call my cardio doctor. when He arrived, he said I should never ingest lidocaine again and gave me some medicine to settle things down. I'm sick of doctors telling me I am anxious or dramatic or pretending...ugggh!!!!!!!! Makes me want to go postal.
  8. Doctors make so many mistakes...we would probably be shocked if we knew just how many mix ups are included in our mountains of medical files. I'm sorry this happened and I'm glad you sent the FAX...please let us know about the thyroid thing when you learn more. We're thinking of you!!!
  9. I don't mind but my info. is at my parent's house at the moment. I found the hotel by going on the Mayo website and clicking on lodging. Have you been on that site? It has some good information. I think the name of the hotel is LaQuinta Inn...that sounds right. Maybe the difference in the information they sent you and what they sent me is that I am going through the entire POTS clinic workup and you are just wanting some advice from Dr. Low. Also, the fact that you are private pay may make a difference. I have good insurance and thankfully only have to worry about copays, lodging, and eating. I filed my income taxes early so I can use that money for the trip. I'm not familiar with the way your health care system works...could be that that also makes a difference in what they schedule for you. If you don't find anything on the Mayo site, let me know and I will get that phone number for you. Best of luck!!!!
  10. Ernie, When do you go to Mayo? I am going in March and they sent me a packet with tons of info. including a detailed schedule of tests I will be having. The schedule is hour by hour with details of where to report to and what time each test or doctor consult will happen. They sent instructions as to what to bring with me as well. The letter they sent with the packet said I am going through their "POTS Clinic". I am scheduled to be seen by Dr. Low as well as other doctors and have been assigned a nurse practitioner who will follow my case all the way through the process. They gave me her name and a way to contact them to get messages to her beforehand in case I think of something I want to know or something they should be aware of. I got a hotel for $79 a night a few blocks from the clinic with free shuttle to the clinic and microwave, fridge, coffee pot, etc. in the room. Also an indoor heated pool...that will be great for after a long day of testing. They also have free hot bar breakfast. That will save me some money on food. I am scheduled to be there for testing for 5 days. I am hopeful that Mayo is going to be what we are both looking for. Best wishes to you.
  11. I wanted to let everyone know how this situation played out...I went into work today and the lady who had tried to explain to the other how certain scents affect me met me at the front door. When she realized the boss sent me home she was furious!! She talked to the boss about it and told her that it was bothering everyone but it was a matter of health for me...she said if something wasn't done, she would take it further herself. She said the boss called the air freshener queen into her office and wrote her up for the way she handled herself. At first, she refused to sign the write up, but decided to sign it finally to keep from having it go further. She was warned that she was no longer allowed to spray anything in the work area that is unventilated. There was a sign on the door of the work area that stated absolutely NO sprays allowed!!! Needless to say, I got icy glares from her all day. I didn't mind because I made a new friend out of all of this. The lady who took it upon herself to handle this for me had never really been close to anyone before. She usually keeps to herself. I felt so good that someone actually went to bat for me. I bought my new found friend lunch today and we sat and talked and she asked lots of questions about POTS. She was so kind and told me she had not really understood until she saw my reaction yesterday to the spray. She admitted it scared her and something just grabbed hold of her and told her she needed to do something to stop this idiot from abusing me. It really renewed my faith in people...sometimes we feel so alone and then out of the blue, someone comes into your life who surprises you. By the way, I love all the ideas...especially the beans and cabbage!!!! If it had not been resolved today, you know what I would have been eating for supper tonight...lol
  12. I have started working 1/2 days while on FMLA leave and today was tough due to a co-worker. We work in a small unventilated area for a portion of the day and she kept spraying air freshener every few minutes. I calmly told her it was bothering me and she said she just had to use it because the room was stale smelling. I tried to ignore it, but I started coughing and getting dizzy and felt nauseated. I went outside to get some fresh air and that might have helped except that it is 23 degrees outside and that set my other symptoms into overdrive. Another co-worker realized what I was going through and tried to explain to the other that certain smells set off my POTS...well, she shrugged her shoulders and said she didn't think a smell could bother anyone. She returned to her desk and put the can away...we thought that was that and then she pulled a perfume bottle out of her purse. She sprayed it all over her and then a spray or two into the air...it was a very dry, flowery scent and I thought I was going to die on the spot. I finally just gathered my belongings and left the area. I told the boss why I wasn't at my assigned spot and she told me to go on home. I still have a headache and can't believe that anyone would be that inconsiderate. I doubt the boss did anything and I don't know what tomorrow will be like. I don't know what to do if this happens again. I am both mad and hurt that she did this. I really don't want a battle, but I do want to be able to breath and not have to feel sick at work when it is preventable. How would you handle this? Thanks for listening.
  13. My POTS doctor said he hears this complaint alot from other patients. I have trouble washing my hair and my husband has to help me dry and style my hair...thank goodness he does a decent job of it. My arms feel as if they weigh 50 lbs. each when I raise them. I first noticed this when I tried to paint a ceiling...NOT a good idea. I had not be diagnosed yet at the time and my sister thought I was trying to get out of the work. I have not found anything that helps with this and my doctor had no suggestions either. I guess I will just avoid raising my arms above my head.
  14. I love to snuggle up my daughter and just talk to her...she has an amazing sense of humor and a big vocabulary...I look into her innocent eyes and listen to her take on life...instantly makes me thankful for the good things I have. We usually end up with a big laugh and hearing her giggle is the sweetest sound on earth. If she is at school, I curl up on the couch and watch a favorite show while my dog lays at my feet (a great foot warmer) and try to ignore all the things that need to be done around the house.
  15. Thank you for the link...I read the entire thing and found that I have many of the symptoms also. My POTS doctor and my cardiologist have both mentioned that they think I have CFS and have put me on Lyrica for the pain. It has helped some, but mostly just the headaches. I still have muscle pain that becomes unbearable at times. I do believe POTS and CFS are closely linked.
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