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LisaFriday

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About LisaFriday

  • Rank
    Lisa in Alabama
  • Birthday 07/24/1970

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  • Gender
    Female
  • Location
    Montgomery, Alabama

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  1. Thanks for wanting to be Cushie Buddies...I pray that you are going to learn a lot here. I cannot tell you how much this Board has helped me get through this very difficult year. Take care. Lisa in Alabama

  2. Doesn't Susan seem like the best lady ever! I wish I lived close enough to her to be her "in person" Cushie BFF!

  3. You are one of my favorite people on these boards...so uplifting, supportive and full of wonderful wisdom and advice...thank you!

  4. Happy41: Wonderful advice and fantastic examples that not only my husband, but, my friends and family can relate to and understand. Thank you. As for the back surgeries, well, no trauma initiated it... Just one day my back 'popped' and I was unable to stand up fully erect. It was awful... a huge disc ruptured onto my sciatic nerve. Then, it did it again and again... When my neurosurgeon (for my back) learned of my having been diagnosed with Cushings, he said that the increased amount of steroids (cortisol) running through my body may be the cause of my bone degeneration. I have phone calls into Seattle now and the clock seems to be at a stand still... More waiting... I am convinced that God is trying to teach me patience with this disease! Again, Happy41, thank you for your advice... Lisa in Alabama
  5. Thank you all so much for understanding my predicament and giving such great advice. After reading a few of your responses to my original post, I cried to my husband last night. I am trying to get him to understand that I must go to Camp Cushie on Sunday. Happy 41: you are completely correct. I have had NO testing since my one/two week post op visit in April. I thought I was headed to Seattle and figured I could wait to get ALL the numbers/facts I needed then. NOW, if I do not go, my husband wants me to ask my Dr. friend to do many of the tests that they would be doing in Seattle. He just really does not understand all of this. He is so concerned that I will get out there and decide to have my second "BRAIN SURGERY"... (I KNOW Pit Surgery is NOT Brain Surgery, that is what HE calls it every time... he thinks it is funny.... ....) I am thankful that he is so concerned about my having another surgery... Because I have had lots in the past 5-6 years... 4 Lower Back Surgeries (2 Spinal Fusions) Gastric Bypass this past Oct IPSS (He considered that a major surgery b/c I was really scared of it b/c I was awake...normally I am NEVER scared of surgery) Umbilical Hernia Repair March 2010 Pit Surgery April 7, 2010 So, he has a right to think our 'surgery luck' may run out... and this may be the ONE that I actually have complications. Anyway, we decided last night that if: Seattle has not filled my Camp Cushie (5 days of intensive Cushings Disease testing) spot yet, AND IF: These new medications that I am now taking: Meloxicam and Famciclovir do not keep me from being tested next week AND IF: I promise to NOT have a second Pit Surgery while I am out there (b/c Dr. L and I had planned for me to do so if the tests said I needed to...that would save me a 2nd trip to Seattle) THEN, I could go... So, I have put in phone calls to Seattle to see if the spot has been filled and if these new meds are OK to continue to take during the week of tests... I will post later today with how this silly little DRAMA of mine unfolds! Again, thanks for all of you here! It is so nice to know that you can be in a place where you are supported and understood. This disease has made me such a 'recluse'. I hide from so many people who love me because they just do not understand! So, thanks! Lisa in Alabama
  6. HAPPY 41 I am so so so sorry that I made it sound like he was doing a clinical trial on Cushings... I did not mean that at all... in fact, he knows nothing about Cushings... I never meant to lead anyone to think that I was in a 'clinical trial'... in fact, this is a research work in progress... This research is something that has just 'fallen into his lap' because so many of his patients have Fibromyalgia. The more he studies, the more he finds a link between the HSV I and FM... So, He just feels that many of my symptoms are similar to people in his study that have HSV I and Fibromyalgia... He was hoping that this six month medication regimen might help me not have to have another Pit surgery... I am truly just grasping at straws. For five days I had been praying and praying when a friend texted me out of the blue asking me to contact our surgeon friend ASAP! I know I need to go to Seattle, but my family is so encouraged by our family friend trying to help me without having more surgery. I am so tempted to get on this airplane on Sunday. I am so torn. I have a ticket, a room at the hospital's inn and it is all paid for... Why can't our families just trust that we know our bodies? Why can't this stupid Cushings disease be as well known as Cancer/Diabetes/etc? People understand those issues and are empathetic to them, but with Cushings they are just perplexed! Hell, my family and friends are now thrilled I have Fibromyalgia because they have at least all heard of that! Again, I am so so so sorry for making it sound like a Cushings Clinical Trial... Take care to all of you, Lisa in Alabama
  7. Well, I was on my way to Seattle to Camp Cushie this coming Sunday, July 11, 2010. Then, if everything went my way, I was having my second pit surgery the following Tues, July 20. When the news got out in my small town here in Alabama that I was having another operation, a dear friend of me and my family (a well-respected surgeon) called me and asked to see me immediately. So, last Thursday I went to his office and he explained that he has been compiling research for the past 7 years. He is convinced that Fibromyalgia is the cause of my Cushings Disease. He never once told me that I do not have Cushings...that was refreshing. Anyway, he asked that I try a medicine regimen that has been successful for most of the 100+ patients in his study. The regimen is a combination of Celebrex (or something similar) and Mobic (or something similar). He has asked that I take this for six months and see if many, if not all, of my symptoms subside or become bearable. Because of the respect my family and I have for him, I began taking the medications: Famciclovir 250mg twice a day, and Meloxicam (MOBIC) 15mg once a day. He said I could and should go to Seattle as planned as soon as the six month trial is over if I still feel that I need to go. He said fixing the Cushings would be great, but, he felt it would be a temporary fix, and that this would, hopefully, be forever. After reading his research paper for the fourth time (much of the medical jargon was completely over my head)... I began to think about how many of us on this board are having multiple Pit Surgeries, then BLA's... and we still feel 'yucky'... He hated to think of me having to replace hormones, etc for the rest of my life, if this were the basis of my problem. He is the first Doctor that has ever diagnosed me with (or even looked for) Fibromyalgia... I always thought that Fibromyalgia was a 'joke amongst the medical community'. He has found a link between the HSV I virus (which 90% of the population has b/c of the chicken pox vaccine/shingles/mono,etc.) and Fibromyalgia. This may be something that may help some of us here. I just thought: What if God has sent this to me as an answer to this nightmare... I have been praying for a sign as to go to Seattle or not, and then a DOCTOR CALLS ME OUT OF THE BLUE!!!! I feel that I MUST give this a try... I will keep you all posted on my progress on this thread... FYI: His name is DR. William (Skip) Pridgen. He is located in Tuscaloosa, AL. If this is something that interests you, go to: http://tuscaloosasurgery.com/research.htm or PM me and I will give you his phone number and more up to date info... May God Bless you all, Lisa in Alabama
  8. FYI: If you are computer illiterate/insufficient, and if this intimidates you- THEN, Go to the: "Pinned Signature" topic/post. Follow POST #19 (by Susan)...she has step by step directions on exactly how to do this! It took me two times to do it, but, if I can do it, so can you! Good luck... Lisa in Alabama
  9. Mary, Would love to buy XL mens Boxer Shorts for my husband...he is my main caregiver. My daughter (age 15) would love 'sleep' pants with/ "Cush" on the rear... Not TUSH... ha/ha! Actually, I would wear those too, but I would need an XL or an XXL. I wear ballcaps (made for women) daily because my hair is getting so thin, so, the black cap would be of daily use for me! I would also love a grey hooded sweatshirt that looks like a college shirt... "CUSHINGS" nothing else... no bright colors. Just understated royal blue wording maybe. Hope this helps... but, I am really interested/excited. Love and blessings, Lisa
  10. I also get a strange feeling in my chest. When I am lying down I feel like there is a huge, lead weight lying across my chest. I feel like it is pushing me into the mattress. I have always thought that was when my Cortisol was high. I have a harder time breathing when this happens. I find myself concentrating on this heavy feeling until I make myself change positions. After moving my body the feeling subsides. Hope this helps and that you are healed soon!
  11. I will be 40 this summer... Anyway, I was just DIAGNOSED a couple of weeks ago and you would have thought that I won the lottery! Finally!!! I was right all along, and I knew I could not be getting this fat, exhausted, depressed, hairy, ugly, moley, bruised up, never sleeping, hair falling out, biggest pregnant belly you've ever seen with thin legs....I told everybody I was sick... so, brain surgery on April 7th is the best day ever! Only we can understand this crazy feeling. Our families and friends are great, but, I really am tired of trying to convince them that something is really wrong with me. I am not lazy, I am not eating too much, I am not happy that I do not want to do the things I used to love and enjoy.... I am just tired, sore, weak, depressed, anxious and miserable. I cannot wait for this nightmare to end! I want to be my old self again... I know you do too... We all do. Thanks for this great blog. God bless you and I pray that you get the perfect solution to your Cushings... meds/surgery/etc... Lisa
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