Cystic Fibrosis Forum (EXP)

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  1. C

    Those in Pain Management

    Thank you for all the advice and ideas. Have any of you ever been given Intramuscular 4mg Dialudid (hydromorphone) shots to give yourself at home? I have been rx'ed this. When in intense pain, I give myself an injection in the rear-end and I am feeling a million times better within minutes...
  2. C

    Rude Hospital Nurses

    I have waited well over 40 minutes for things in a hospital before...and yes, I was pushing the call button every 5 min and sending my husband down to the nurses station. Most of us do understand that we are not the nurse's only patient...and by no means did I interpret that Murgie suggested her...
  3. C

    Extremely scary PICC insertion

    Have they ever given you anything for anxiety beforehand? I have not experienced that feeling with a PICC line, but I have with other procedures and it is usually anxiety. I hope you get it figured out! That would be a horrible feeling to have associated with something that is supposed to help...
  4. C

    Those in Pain Management

    Thank you everyone for your advice! I called yesterday (Friday) and begged for some help/relief. They did see me and I got on the Zofran for my nausea and they adjusted my meds. Ahhhh, sweet relief. Sara- Wow, thank you for sharing your story with me. I do agree, I have always been one to steer...
  5. C

    Those in Pain Management

    It has been quite awhile since I have posted here. Last fall I took the advice of my Rheumatologist and saw a pain management specialist. I am in constant pain. I wake and my joints burn, my muscles hurt across my chest and back- IBprofin just did not cut it anymore, I was taking more Prenisone...
  6. C

    What is your FEV1 Score?

    I am all over the place. I am DDF508, 29- If you look back to the comment I wrote in June I was 93%. At clinic this past week I was 77%- a high from December when I was at 65%. I am 5'6" and about 135lbs. When I was 18 I always blew well into the 120%.
  7. C

    What is your FEV1 Score?

    I am all over the place. I am DDF508, 29- If you look back to the comment I wrote in June I was 93%. At clinic this past week I was 77%- a high from December when I was at 65%. I am 5'6" and about 135lbs. When I was 18 I always blew well into the 120%.
  8. C

    Whose with somebody and the parents throw insulting comments at you?

    I know that all of us here understand just how hard it is some days to accomplish what we do- with the body we were given to do it. There are days I do not want to get out of bed- let alone, get up at 6 am, get my 6 year old and 3 year old fed/dressed, drive my 6 y/o to school, come home and...
  9. C

    Whose with somebody and the parents throw insulting comments at you?

    I know that all of us here understand just how hard it is some days to accomplish what we do- with the body we were given to do it. There are days I do not want to get out of bed- let alone, get up at 6 am, get my 6 year old and 3 year old fed/dressed, drive my 6 y/o to school, come home and...
  10. C

    port being placed tomorrow

    <P>Here is mine: Top one is taken in a mirror-so it is reversed. This is what mine looks like accessed. The bottom one is how mine looks when it isn't accessed. You can see the scar right under my necklace- up by my neck- where they tunneled in. I think my neck hurt more- and for longer- than my...
  11. C

    port being placed tomorrow

    <P>Here is mine: Top one is taken in a mirror-so it is reversed. This is what mine looks like accessed. The bottom one is how mine looks when it isn't accessed. You can see the scar right under my necklace- up by my neck- where they tunneled in. I think my neck hurt more- and for longer- than my...
  12. C

    port being placed tomorrow

    How do you add a photo? If you are still looking for photos....mine is a little different and sticks out more.
  13. C

    port being placed tomorrow

    How do you add a photo? If you are still looking for photos....mine is a little different and sticks out more.
  14. C

    please help

    I was dead set against a port. Partially from being scared, the other was denial, or thinking it meant I was giving up or getting worse. I got my port about 2 years ago. It was tender for the first few weeks. After that, I didn't even realize it was there until it was accessed. Mine is in my...
  15. C

    please help

    I was dead set against a port. Partially from being scared, the other was denial, or thinking it meant I was giving up or getting worse. I got my port about 2 years ago. It was tender for the first few weeks. After that, I didn't even realize it was there until it was accessed. Mine is in my...
  16. C

    Disability Question-Handicap Parking

    ....and remember, our Doctors work for US, not the other way around. If you don't feel that your CF doc is listening to your needs, I would speak-up or find a new one. <img src="i/expressions/face-icon-small-smile.gif" border="0">
  17. C

    Disability Question-Handicap Parking

    ....and remember, our Doctors work for US, not the other way around. If you don't feel that your CF doc is listening to your needs, I would speak-up or find a new one. <img src="i/expressions/face-icon-small-smile.gif" border="0">
  18. C

    Disability Question-Handicap Parking

    I have one and my FEV1 is currently at 64%, but has been as high as the 90's and as low as the 50's - I do bounce around. I rarely ever use it. One of the few times it gets put to use is when my joints are so sore and I cannot hardly walk across the hospital parking garage- or if I am extremely...
  19. C

    Disability Question-Handicap Parking

    I have one and my FEV1 is currently at 64%, but has been as high as the 90's and as low as the 50's - I do bounce around. I rarely ever use it. One of the few times it gets put to use is when my joints are so sore and I cannot hardly walk across the hospital parking garage- or if I am extremely...
  20. C

    Do you lead a normal life: Please check the best answer.

    I am wanting to drive a semi now too....haha. I feel as though when I am told I can't because of CF, I try a million times harder until I do. And I always do. I think that is the amazing thing about us. I have never met someone with CF who doesn't give mostly everything in life 110% plus some.
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