kselibrary

Biopsy Results In ~ Morphea

26 posts in this topic

Tru ~

 

I have two Cavs...and I love them to bits...went from bulldogs to cavs, so quite a difference, personality and look-wise.

 

Dear powers that be, per the TOS of this site, is it allowable to post links to places like photobucket so we can share pics of things like our dogs (I'd love Tru to see them). Can links to that be sent via PM?

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Hi, Karen (and others who may wonder). Forum members may only post links to articles which are already linked on the site. You are certainly free to post links in PM messages or in emails. You may post pictures of your dogs in your gallery as well, though I recommend keeping the size down. Also, feel free to discuss your pets at length in the Sclero Den. We have quite a few members who are owned by dogs. :)


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Oh Carrie, you have made my day. Your last statement was so funny. I truly have the giggles. ( We have quite a few members Owned by Dogs). I just love it. Did you write that intentionally. Sorry! I am still laughing. My husband even wanted to know what was so funny. I gave him my fit of laughter. Just thinking about everyone reading that and rereading it and getting their own laughter up and working.

Tonight is chat night. I hope to see some of you online. I am going to try to get home before 9:30 and see if I can chat for a bit. Until tonight friends. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Sheryl,

 

I'm gonna try and be in chat tonight. I've so many questions!

 

I see you live in Brooklyn, MI. I live in Howell, MI !!!

 

I was just contacted by Barb (I love that woman) from a sclero support group, and she seems to always bring me peace of mind.

 

I seem to not be able to get over the worry about this morphea, and it seems hubby has found 3 more spots that look iffy.

 

I feel bad complaining about them because...well, others here have so much more to deal with. But it scares me, that and the lichen sclerosis.

 

Yesterday I was up...today (yell at me Tru) I read too much and am blue again.

 

Methinks I need to get those 20 'covered by my insurance' therapy sessions started!

 

Me also thinks, hubby needs to suspend my too much reading privileges and take me out to spend money to keep my mind off it (and boost Michigan's economy) :D

 

~Karen

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Karen,

Me thinks you need to get your mind off of your health problems for a while as well. If shopping does it for you, then go for it! Anything that works!

 

I'm thrilled to read that the GI results came back normal. :) Now you can just concentrate on using your 20 sessions to deal with the morphea issues. I hope everything works out for you. From your avatar it looks like you are one very lucky woman. What a beautiful mother and child!!!!! Be thankful for your blessings and make your health issues "a part" of your life, not your whole life. We all have a lot to be thankful for.

 

Big Hugs to you and your family,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Janey,

 

Huge hugs to you.

 

I've a friend that is a therapist and we talked tonight. She said, 'you control freaks have the hardest time coming to terms that you can't fix something and you must just deal with whatever it is." She also informed me it is alright to be scared and human, and that control freaks read....it's what they do, until they feel they understand, and that, in itself is some form of control of the uncontrollable. I think that makes a great deal of sense!

 

Now more hugs to you as that blessing is my grandson, not my child. :D Happy dancing all over that you would think I could be young enough to have that baby. I'm almost 49 years old. That baby is my blessing though, one of the biggest ones in my life. So thank you.

 

I am blessed, and I know this...and I am thankful for those blessings. I've decided to keep a journal of this whole thing, and I plan to begin each page by listing 5 things that are truly blessings in my life.

 

That being said...ahem (pessimist alert), I'm still freaking scared! I don't think I'd be so scared if it were the diagnosis of Morphea....

 

but it's the all over itching (face predominant, but I'm so freaked out that could be STRESS!!!)

 

Raynauds (which I've had for 15+ years)

 

Bowel issues (and I've had them for 25+ years...all of a sudden they seem big and scary, when they never were before)

 

and the ever lovely biopsy and thought of lichen sclerosis.

 

*slaps self....and stumbles off the worry box*

 

I hope to make it to chat. I hope that doesn't chase others off. LOL

 

~Karen

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Karen:

 

It's 12:38 and I'm up again. I'm waiting for 2 AM so I can take another pain pill. I'd give birth a thousand times over again without medication than to have to deal with this pain.

 

I know what you mean about a control freak. I used to be. That's what threw me about this disease; I had no say and no control over it. It dominated me. That's why for years I hid my symptoms from doctors and when conditions arose one by one, they were stymied when medications did not work and illnesses did not clear up. All I had to do was be honest with them and say one word, CREST. Yes, it's true, not all doctors are up on the latest and greatest for dealing with this, and I have even run across two of them that I had to explain what CREST stood for.

 

It was my oldest son at the time, that asked me what I was afraid of. He said I'd known all these years, and now doctors are putting a name to the disease. He asked me if the name and diagnosis was going to change what exists; if ignoring it was going to make it go away. Hence, he coined the phrase to me at that time, "it is what it is". That's now become my motto for things that happen in my life that I have no control over. I can't lament, curse, hate and blame over any of these situations. Stress only adds to the overall conditions.

 

It is what it is........I will explore all my possibilities, I will over ride my doctors' decisions if my mind and body tell me to (as I did on Monday by going to the wound clinic).

 

You still have "control" in that you know your body. There is not one person who doesn't. Not one person who "just doesn't feel right", who feels a doctor's diagnosis "just doesn't set right" as you leave the office, who asks "is this rash I'm getting from the medication?". It's all about knowing YOUR body, having control over your body and whatever procedures are proposed or implemented and yes, control on seeking and finding out as much information as possible. Unfortunately too much information can be a dreadful thing. I started to do that 15 years ago, and no matter what you plugged into the internet search engine, there was NO info. Somehow, I think that was a good thing for the layman. Now, you can find out all you want and as I told you before, they always have to portray the worst with the best, but that need not apply to all.

 

The control you need to have is in one's choice of doctors. There are a few out there who think they know, think they have a handle on the disease, yet have never experienced a patient with it. I have had two such doctors and when I ask them "how many patients do you have with my disease?", one said many, many and the other said over 50. I knew then and there to vacate the premises from my experience of reading the ratio of people versus the disease. It's pick and choose until you get all the knowledgeable doctors you require in a row, and hope they don't move or retire!

 

PS: Grandma? No way! Send me a jar of whatever you're using, because I could sure use it. Terrific, I thought it was you and your child as well.

 

Kiss the cavs, relax and take one day at a time.


Tru

 

It is what it is...........

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I love you Tru.

 

 

I'm sorry you were up and hurting, and I talked to a friend, who is a therapist, tonight, and am coming to understand control freak issues.

 

I do 'get it'. I am calming down.

 

My initial response is always panic (tis a curse), then gradual understanding.

 

Thank you for your post.

 

Today is dermatologist, and record gathering for the rheumatologist on Tuesday. I plan to stay busy, and stay proactive.

 

I've decided I may as well name my morphea spots as they are going to be with me for some time probably. I may as well be friends with them...and I've decided its time to try and 'control' the worry.

 

Oh, and I use no special cream, silly. I think ornery is what keeps me as I am. B)

 

 

 

 

Sheryl and Erin,

 

Chat last night, a blessing. Thank you.

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Vulvar biopsy in.

 

Lichen Sclerosis is confirmed. She thinks they caught it very early. Even though I knew it...it's still a bummer.

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Karen:

 

I got a bummer today. Went to the wound care clinic and all tests (biopsy, x-ray, blood tests) came out good. News is I have to have half my toe amputated on the 28th. Doctor feels with gangrene in the picture he needs to go to the first knuckle of the toe and pull the skin over to provide a healing area. Good news is blood flow to the feet and toes is excellent.

 

Was bummed out at the shock of "amputation", but quickly got over it with the help of my friends. In the future when asked what happened, I'll merely say it was an injury due to kicking my ex ;)

 

My present friend said I had ugly toes to begin with, and now he'll have to look at only 4 and a half of them. :blink:

 

Just want it done and over with already. Will be out on disability until January pending no difficulties.


Tru

 

It is what it is...........

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Tru,

 

I am sorry about your toe. I love the way you look at it though.

 

I had a bad night last night, but a bit overwrought and let emotion take me. What did that do, it seems to have made the Lichen Sclerosis flare. BIG TIME.

 

Got a gander at it today with a mirror...ugh. Red, inflammed, the area above the clitoris irritated, the line along one vulval lip..ouchie.

 

Today is rheumatologist day for me.

 

I'm almost afraid to go!

 

OH...went to the dermatologist yesterday (boy howdy do I need a different one...he was so busy doing microdermabrasions, that my questions on how to treat my morphea, and the 4 new plaques that have show up...made him late for it...my husband was ANGRY over this). Got corisol injected into the plaques, and some spray he wants me to use that cost $400 at CVS.

 

Read the ingredients and it is the same strength and the same drug as I am using on my vulva in ointment form...I am not paying $400 for the spray. YIKES.

 

I hope you all have a beautiful day. I may go walking in the fall sun for a bit after the rheumatologist...hoping for positive things.

 

K

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