About

Member has chosen to not make this information public.

Groups (1)

Pages

Member not yet following any Pages.

Posts (7)

Sun, Jun 2 1:31pm · Erosive oral lichen planus in Autoimmune Diseases

My son was born with PFFD (Proximal Femoral Focal Deficiency) which is now referred to as CFD (Congenital Femoral Deficiency). He had reconstructive hip and knee surgery along with a pelvic osteotomy at 4. He’ll be 10 this month but we’re getting him prepared for staging to remove his hardware (6 titanium screws) before surgery number 3 of 6 remaining. He’s a special little guy and he’s strong. He wears a non-standard prosthetic leg now but when everything’s all over he’ll walk on both of his natural feet. As for me, I’m going to go to the dermatologist but I won’t be too quick to let them cut anything off of me.

Sun, Jun 2 9:11am · Erosive oral lichen planus in Autoimmune Diseases

Thank you Ms. Becky! I’m definitely not giving up. It’s an easy fix to just cut physical pieces of people off without having to work to find a solution. However, the psychological impact is the most damaging in my opinion. It’s ironic that life has me going through the same cycles but in slightly different positions. Today it’s my time to decide to remove a part of my labia. Ten years ago I decided to not amputate my 8 day old son’s leg. Two totally different people, body parts, and varying degrees of disfigurement yet both would’ve been a one time procedure to eliminate a health issue that just needs more time to figure out.

Sat, Jun 1 11:41am · Erosive oral lichen planus in Autoimmune Diseases

Hello again I’m back with an update. So my OBGYN left to pursue her career elsewhere and I made an appointment with a new one because of the painful lesions on my vagina. After discussing the possibility of LP and my 10 year history of my vaginal issues and recent recurring oral ulcers, she did a biopsy. I ended up with an infection at the site a few days afterwards. However, now I’m just left with more questions and confusion because my biopsy results were normal. How could this area that always swells up with painful legions be “normal”!?! Plus the white skin areas on my brown body…sorry I’m African American. Then the constant oral ulcers among other things, I was sure I had LP. Then she says well if it’s bothering you then we can send you to a dermatologist to “remove the area!” I feel like I’m going crazy! It’s normal but let’s cut half of your labia off since it’s bothering you! The other issues well you can just deal with on your own. Of course she didn’t state it like my previous two sentences but in my mind that’s what I heard. In a totally unrelated situation…this is similar to what my dad has experienced. He had biopsies done on his forehead and scalp due to some significant skin changes yet every time they tell him it’s normal. It started out about the size of a pencil eraser but now he has two tangerine sized areas on both sides of his head that are getting worse daily. Again they ALWAYS tell him everything is just fine! I don’t know maybe we have some underlying genetic skin condition that hasn’t been figured out. I know that recently I found out that I DO carry some recessive mutated gene when they did my cancer screening. Maybe I should have a through genetic screening from head to toe, since they only screened for certain things. I’m sorry I’m rambling but I just have lots of questions now! 😔

Wed, May 22 3:40pm · Erosive oral lichen planus in Autoimmune Diseases

Most of my specialists are practicing in a university medical center I hadn’t brought this up to them yet. I started with my OBGYN and the dentist but I will definitely fill them in and see if I can get some answers and relief. Thank you and I’ll keep you updated.

Tue, May 21 11:57pm · Erosive oral lichen planus in Autoimmune Diseases

We’re both handling our health the best that we can right now. Thank you again for your time and input!

Tue, May 21 11:13pm · Erosive oral lichen planus in Autoimmune Diseases

Thank you! I just finished reading the article and yes I can totally relate to the issues it caused in my marriage. But at this moment it’s not as big of an issue because my husband has CML Leukemia. The chemotherapy is wrecking havoc on his body as well as his mind and spirit.

Tue, May 21 9:34pm · Erosive oral lichen planus in Autoimmune Diseases

First of all, thank you for being so thorough with the process that has worked for you. I’m new here and although I haven’t been diagnosed with LP yet I’m sure that I have it. I do a lot of research and my years of college study has always been in the medical arena. Anyway I have OLP and vaginal LP. I mentioned my symptoms and the possibility of me having LP to my OBGYN, only to be told “That’s an old lady’s disease.” I apologize to anyone that’s offended by that statement because I’m offended by it as well. I have other conditions that are considered to be “Geriatric conditions” so I wish they’d stop saying things like that. Anyway, I have been having really bad oral episodes lately which had me do more research on LP. I was treated with Whitecars Solution w/Nystatin. I was given two prescriptions for 900mL and was to swish and swallow 15mL 4x/day. Of course it wasn’t covered by my insurance (Medicare & Medicaid) so it cost me a total of $300. I lost 10lbs before my mouth was well enough to eat. I’m 5’2 and usually around 125lbs so my pants we’re pretty loose afterwards. I live in a small southern town now, so I’m having the hardest time getting properly diagnosed and treated for LP. As far as the vaginal LP they have for over a decade treated me for folliculitis. It’s been tested and proven to NOT be a herpatic rash. I’m just very frustrated with all of this. I’m 39 with 4 children and I’m disabled with cervical spinal stenosis that has moved down into the upper half of my thoracic region. I also have bulging discs in L-3 to S-1. Add in the CFS and sciatica, I’m in pain everyday of my life. I’ve seen more doctors and specialists than I care to admit to, yet I ALWAYS get contradictory reports. I’m a completely exhausted woman at this point and I’m just trying to find some answers anywhere that I can. So that’s why I’m here! I’ve found that talking to other people over the years have given me a lot more insight than the majority of the health care providers I’ve come across. They like to place everyone in what I call a cookie cutter frame because “I went to school and I have the degree” and my books state my diagnosis is correct. They don’t consider people as individuals anymore!