Emotional Component of LS & Related Diseases
Posted , 14 users are following.
How are any of you dealing with the emotional component of the symptoms and problems with LS and related diseases? You can't talk t o friends about this, barely anybody, in fact. This problem has nearly ruined my life and I'm so upset. I am not dealing with the stress very well and the thought of being permanently bedridden from the surgery to remove all the skin and the resulting permanent catheter and ostomy, not to mention the pain is about driving me insane. There would be no quality of life there and certainly no going to work anymore. Anyone have a suggestion? Tried church, pastors, counselors, got nothing.
1 like, 28 replies
Nancy_K_B Guest
Posted
Dear Dr. N.
My careful caring long email yesterday was deleted by the admin. So I'll just send the guts and I apologize for the shortness of it.
So sorry about 6 months of pain. I"m not sure if you've tried some of the soothing creams we've all discovered? Coconut oil, olive oil, A&D diaper rash ointment, castor oil with a few drops of lavendar, Aloe vera gel with drops of tumeric extract; also soaking in a bath with borax and baking soda (they are both alkaline). Some are barrier ointment and the others actually have healing properties - especially the aloe/tumeric.
When I discovered this about 2 years ago, I spent quite some time searching online M.D. and N.D.s all the nutritional deficiency aspects I could correlate for autoimmune diseases. Here is what I discovered, these two are in my discussions list.
https://patient.info/forums/discuss/nutritional-support-protocol-for-autoimmune-diseases-636963
and as much science behind it all that I could find.
https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033
Nancy, Asheville, NC USA age 73
Guest Nancy_K_B
Posted
Hi Nancy,
Thank you for your intentional caring. I know about admin deletions.....
I will check these links out. Yes, I have used all you mentioned except the borax/baking soda but have no bathtub. Have to figure out another way.
Do you live alone or with someone and if with someone, is that someone supportive? I hope so. We need support. That's what I don't have and trying to talk to friends has left me with 5 fewer "friends." I am losing my job because of this and maybe my place to live. (Am sharing house).
Have read books on auto-immune problems but docs refuse to do tests and I am already out of pocket quite a bit of money. I have a virtual drug store at home! Think I'm going to try bourbon on it. next. Hah hah. Trying to keep my sense of humor. THANK YOU!!!
Nancy_K_B Guest
Posted
OH Dr. N.
So sorry you have such miserable friends. That comment about you "must have done something" is so ignorant. If you want to try to resurrect your best friend relationship, you might want to let her know that LS has finally been confirmed to be an autoimmune disease... just a different version of things like psoriasis, vitiligo, etc. Skin diseases are all evidence of liver under distress. NOthing to do with sex etc. and not communicable etc.
Anyway, other women here have mentioned using a sitz bath. That should help tremendously, I take one regularly.
Oh, yes I live alone, but I have good neighbors and a couple women friends at the other end of the telephone. But like others here. I don't go into details, but appreciate the commiseration. So many of us here are in our 50s 60 70s and up!
When you've had time to read my articles you'll find that I discovered that autoimmune conditions of any sort respond best to Vitamin D 25OH at greater than 60 ng/dl. Many doctors don't know this, so you might want to call the office of one of your docs to find out your exact number. Most literature let's the minimum be their reference point - but if you(anyone) have cancer or any other autoimmune condition - the bare minimum won't do sh** for healing.
I just mentioned to Jeannie j on here today that when I first figured this thing out, before even seeing a gynecologist, I took 15,000 iu daily and felt somewhat better within 2 days. Of course each person's needs are different.
by the by, are you in the U.S by any chance? If you are feeling in such dire stress as it sounds like, have you considered simply applying for early social security? age 62.
ONe more thought... about 33-35% of us LS sufferers are ALSO Hypothyroid. Have you been tested? I spent 15 years asking one Doc or another to test me for low energy etc... the TSH and T3 and 4 always came back "normal". It wasn't until I looked for a second opinion cardiologist for a heart issue that this amazing man said that most other Docs forget to also test something called TPO ( antibodies to thyroid). BINGO, DUH! oh my gosh I hadn't realized exactly HOW low energy, mental fog I'd been in for some years before getting on Levothyroxin. so you may want to get that tested too.
Guest Nancy_K_B
Posted
Hi Nancy,
All good points you mentioned. Yes I told my 30 year "friend" Roberta that it was likely auto-immune which she did not understand. Have been taking synthroid for 30 yrs and all was well in Dec '18 on thyroid and the Vit D was 42. Am taking more D3 now. Yes, I know about D's powers to heal. Had thyroid antibody test (thyroid peroxidase) long ago which was high but current doc will not repeat it. (??)
Early SS gives me so little that I would have to begin digging into savings to pay bills and insurance in US, in my area, is $1,000 a month plus $5,000 deductible and many carve outs. Retirement is not an option plus I love what I do. It is all I have left in life.
Update- doc this morning said she does not think I have LS but did not do the biopsy either and says vulvar atrophy and maybe colon problems. Have NO trouble with colon as of now. Doc does not know what to do next so I am likely on my own. Am taking probiotics, enzymes, (serripeptidase), A & D, extra D, Good B vits, natural C and E. Have read of the liver congestion issue. Have to check that out further.
I will seek out all of your posts. Thank you. Will check back