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Biopsy Results In ~ Morphea

26 posts in this topic

My biopsy results came back as morphea. I'm a bit bummed today as well, because I think I see 2 or 3 new spots coming up. No, not a bit. I'm bummed.

 

Anyway, I had already (due to some wise advice) my appt with the rheumatologist set up and will see him on Tuesday.

 

I was at the Gastro today who sent me for the following tests.

 

IGA IMMUNOLOGLOBULIN A

TTG - TRANSGLUTAMINASE AB

HFP - HEPATIC FXN PANEL

ANA - ANA

CDT CLOSTER. DIFFICILLE TOXIN (know this one too well)

SMAB ANTI-SMOOTH MUSCLE ANTIBODY

AMA ANTI-MITOCHONDRIAL AB

 

I have IBS (hoping that doesn't mean something in regard to systemic!) and it has been acting up due to recent antibiotic treatment for a tragus piercing gone bad...thus the c diff test.

 

The rheumatologist has asked me to wait for tests until I saw him, why get poked twice, but yesterday I was at the gyno for a vulva biopsy...and my friends, after you've had that...one more needle poke is small taters. My gastro knows me well, and knows the ability for me to go to the rheumatologist doctor with some information makes me feel a little ahead of the curve.

 

He is also sending me to a therapist, as my anxiety level is through the roof.

 

What do I take to the rheumatologist doctor?

 

I was told a list of any and everything I could think of that may pertain to health issues he should be aware of:

 

Raynauds for 15 years...

IBS...

Itching all over consecutively for two months each Spring

Morphea

 

 

I can't think of any others right now but will continue with the list.

 

Plus a list of questions with space below to write answers.

 

 

 

Is there anything else I should take?

 

Specifics I should ask?

 

 

 

I so want to do this right, and be my best advocate...proactive, and as much as I can...one step ahead.

 

Also...I am breathing...but my last question for the night, is it normal to freak out and be so scared? I heard localized scleroderma and thought ok...til I began to read of systemic, and read the list of uh ohs and saw I had several.

 

How do you deal with the wave of overwhelming, oxygen stealing angst that sneaks up on you occasionally?

 

I really do appreciate any thoughts, guidance, or shove in the right direction.

 

Karen

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Karen:

 

I freaked out at first, then my kids split (I believe due to my illness) and haven't heard from them since June.

 

I went back to a therapist I began seeing when I was getting divorced. That helped with both recent slaps to my head.

 

My rheumatologist suggested I attend a sclero group at a well known hospital in order to get a handle on the disease. As I explained to him, too much information is as bad as too little information. I know what it is, I know what it does, I know there is no cure, I know I will deal with symptoms as they arise. In other words, Karen, stop exploring too much; in general the "worst" is always generated in articles and stories.

 

Stop reading up on it for now, and keep your appointments, accept and get your head together before exploring. Then, you will be able to keep all information in perspective. It's like the warning information on prescription drugs; they have to tell you if one out of seven million had a reaction (even if on a placebo), although it may be as safe as a mother's arms. It's the law to report that one, even if it's not a reality. Same applies with a lot of reading material. Better they report the worst case scenario, probably for the same reasons.

 

Hope I have allayed your apprehension a little this evening.

 

PS: The spots that keep showing up, I've learned to live with it, just as one would liver spots. If that's the worst at this time, that's the least. I was never one into perfection, so I'm not that upset over those things.


Tru

 

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

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Hi Karen,

 

Oh I have so been there done that with the freaking out. The thing that calmed me the most was communicating with all the wonderful people here and learning what life is like for others with diffuse systemic. Not to mention learning how long some have been living with it. That sounds bad....the key words there are long and living.

 

I'ts good to have yourself prepared intellectually and emotionally. It's hard to prepare for the worst without freaking out. I am the same way, I want to know worst case scenario and then be pleasantly surprised that I don't have to deal with that. And if I DO have to deal with that then at least I was prepared emotionally and I won't be shocked.

 

But the hardest part is not letting your emotions run away with you and trying to keep from stressing out. I wish I had a magic answer but there isn't any. For me it just took time and coming here to talk to others in my same boat and learn about the treatments that have worked (or not worked) for them.

 

As far as dealing with the overwhelming oxygen stealing angst: Just go with it. Let yourself feel it. Find a private place or a broad shoulder and cry. Let it all out. Don't keep it in thinking that you're being strong. In the long run keeping it in will only make you weaker.

 

It is a learning experience. You are doing fine. Better than fine. You have armed yourself with information and are getting to the right doctors and coming here for support and advice. So here is a pat on the back for you: pat-pat-pat :D

 

(((((((((((((((((((And a big cyber hug for strength)))))))))))))))))))))))))))

 

Keep us posted.

Love,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hi Karen,

 

If it's any help at all, as I understand it, it is very common for people with morphea to have one or two symptoms besides just the skin involvement. However, it is exceedingly rare for morphea to occur in overlap with systemic scleroderma, with most studies putting the odds at 0% to 2%. There is more elaboration on this in our last book, Voices of Scleroderma Volume 3, which has articles by world experts in scleroderma as well as an entire chapter of stories from people who have morphea and, occasionally, other symptoms as well.

 

Morphea is known to sometimes occur in overlap with lichen sclerosus, which it sounds like you are also being tested for. There are treatments available for both lichen sclerosus and morphea. Small morphea lesions tend to fade or go away on their own, even without any treatment, in 3 to 5 years. If you have more than a few or they are spreading, then prompt treatments can be helpful in preventing the spread.

 

Within Sclero Forums, look for the "Search sclero.org main site" in the left sidebar of each page. Use it to find more info on morphea and lichen sclerosus, too.

 

Odds are you'll feel much better when the diagnostic process is complete!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Karen,

 

I do not have Morphea, so I can't speak to that. However, I do know the angst that can come about while waiting ... in limbo.

 

Once I knew what I "HAD", my anxieties really eased.

 

Keep posting.... that's a good thing, because there are very experinced folks here who are a great comfort and support to us all.

 

Soft Hugs,

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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You know, I knew it was morphea. The dermatologist (actually the PA...you know, if you pay for a doctor, you ought to get a doctor *stumbles off minor soapbox moment*) had pretty much AVOWED it was prior to biopsy being back, and when I went to my gastro yesterday he got a gander and said the same thing...

 

I guess kind of *knowing* it and then being told...there is a difference.

 

It broke my heart, and I don't understand why. I am emotion driven, we'll leave it at that.

 

Truman, while I know that if all it is is spots, it's the least...they are still on my body, and I don't know, I guess I worry about is that it? I'm trying to stop reading, but as barefut has noted, some of us cannot help ourselves. We're all different, I suppose, and what a good thing that is or what a dull old world this would be (although at this time...a little dull, I could do with!)

 

I'm so sorry to read of your children. There is nothing more I can say than, that stinks...and I'm so sorry. When you need them most, they leave.

 

You always allay my fears, and any bit of peace anyone can give me is so very appreciated. Tomorrow I get blood work back...may be another bad afternoon for me. I'm not looking forward to it, and yet need to know. What a double edged sword, it stinks. You are so right on the worse always seeming to be represented, and even when you are freaking out, those are the ones that scream at you, aren't they?

 

Thank you.

 

Barefut,

A girl after my own heart! My sister in the over think and overload of information in trying to be informed, and be prepared department! :P Hubby said to me that the spots are more white today than yesterday...*wonders if that is from the severe stress overload from yesterday, or not*. He took the day off and we went out warm glove, hat and electric blanket shopping for me. Also to see the movie with Dwayne, The Rock, Johnson in it...the movie was not so good, but the actor warmed my blood and that's a good thing. lol :unsure:

 

Thank you for the pats on the back. I'm still frightened. I took an atarax last night because, to be truthful, I thought I'd lose my mind (had some I was given for itching two years ago...they sure didn't seem to lose their potency any!) I won't do that tonight, I don't like how they make me feel.

 

My finger tips feel all tingly today, all day...probably stress. I have moments of greatness...Thank you for the pats on the back...you were just trying to feel my morphea spots...I know it. LOL That may not make you laugh but it does me. ;)

 

Thank you too!

 

 

Shelly,

Are we allowed to cyber squish hug each other. I'll make it a gentle one! That first paragraph...I actually felt a breath, and a full breath at that, after reading that. First one in days.

 

Excuse the newbie, but...how does one come across the book mentioned? Is it for sale, where and how do you go about getting one?

 

I go to the dermatologist on Monday (and actually see the doctor this time...woo hoo) and he is to begin treatment of the spots. One of the smallest looks like it is going away, or maybe fading?

 

I hope I like the dermatologist doctor better than I did the PA.

 

Close your eyes Tru....I think I will go look at the search sclero.org main site stuff for morphea here in a bit. Thank you for the heads up onthat.

 

Other than my bowel complaint (pipings been awful (no pun intended) for 25+ years), the itching (which I have not had in many months, and only two episodes of), and the morphea...I feel fine.

 

OH...yes, that lichen sclerosis...my gyno did it as a precaution as I had some irritation and this diagnosis caused some concern. She says if it is that, it is likely one of the earliest caught cases of all time! :D THAT BIOPSY...well, let me tell you, OUCHIE!

 

Thank you so very much.

 

Susie,

 

How very wonderful of you to check in and share part of yourself and your thoughts with me. Thank you...I think you are right...once I know what is going on, I'll find a way to peace.

 

 

Thank you all, so much. I'm so glad I found this site.

 

Karen

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Karen,

 

I forgot to tell you another thing I did to help me through my "freak out" period. I bit the financial bullet and went to counseling. My counselor really didn't DO or SAY much but it was helpful to me to have an ear, albiet an expensive ear.

 

Anyway, It was easier for me than to go to a friend or family member because I was (still am) in the middle of a divorce so I didn't have a spouse to go to and I didn't want to "burden" my busy friends and family with my new problem.

 

My insurance did pay for 1/2 of each visit, so it wasn't too bad. I would recommend counseling. I think it might help you to get through this rough patch.

 

Take Care,

Love,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hi Karen -

 

I just wanna give you a big hug. First of all, I freaked out big time when I was diagnosed, I pretty much started digging my own grave. That was almost 8 years ago and I have not progressed much since then.

 

As far as what to take with you to the rheumatologist - you really seem to already know that. Remember he deals with this all the time and he'll know what to ask you. Although, I am a full believer in being your own advocate, so anything that pops into your head, write it down, don't worry about having too long of a list, remember you are paying for this appt. Make him work for you.

 

I think right now what you need to hear from him is what good news there is today in terms of you living a long good life. I'm going to give you a link to our emotional adjustment page - hoping it will help you tonight.

 

Much love,


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Karen:

 

Just a follow up to my recent adventures this week. As I've posted here in the past, I've been fighting an extremely painful ulcer on my big toe. general practitioner and rheumatologist have been treating me nearly every week now for months, and I have been on temporary disability for four weeks due to this.

 

I finally dragged myself to the wound care unit close to my town on Monday. The doctor was shocked that my general practitioner had not sent me sooner. I told him he had not sent me at all, and I came on my own.

 

Long story short, he numbed my foot and laying down, I turned my head away. When I got direction on soaking and dressing changes, I left. SHOCK when I took the bandages off. The top and both sides of my toe are gone, in addition to my toe nail. The doctor at the center had to remove gangrene that had developed. I asked my general practitioner several times if the blackness was gangrene and he assured me no. Well lo and behold........I'm not angry that it came to this, I'm not angry that a good portion of my toe is gone........I'm relieved this doctor is taking care of the situation. I have to go once a week until it is healed. He tells me I should be able to wear a shoe by December. He has informed me that if I get so much as a pimple in the future, I am to have them check it immediately. Heavy expense as this center is out of network with my insurance.

 

All this has also landed me a longer stint of temporary disability.........my dogs love it!


Tru

 

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

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I'm calling the therapist today. I just found out my insurance pays 100% for 20 visits! What a great thing.

 

Barefut...

I was glad to read it the counselor helped you. I think one of the things that will help me most is getting my blood results back. My Monday dermatologist appt and learning how they plan to treat the lesions, and the Tuesday rheumatologist appt to cry all over him and unburden all my fears, see what he has to say about them, besides...'good grief woman, I'm going to have to charge you extra for those three boxes of tissue!!!".

 

Thank you, sweet lady!

 

Sweet,

 

Apropos name! I will look at the link. Thank you for it.

 

I believe what has helped me most is what everyone (and especially Shelley) wrote. I feel so good, yet am so scared. I think it is the scare of what happened with our neighbor lady. As soon as the word 'scleroderma' was said...my head and heart went to her case. I too began digging a grave.

 

I have a list of all my past ills, in order of concern! I plan to take that. I have no questions yet until I get my blood panel reports today and then I am sure I will have plenty.

 

When I called for this appt with the rheumatologist, his nurse informed me he made his appts what you needed them to be, so not to expect a quick in and out (ala the dermatologist, I soooo need to find a new one)...but is more the ilk that wants you to understand and make sure you go home, not a mess...but informed. YAHOO.

 

I will be switching insurances in January, so that I can get to the University of Michigan (I live an hour away). The local chapter of the Sclero group in my area is Ann Arbor and the wonderful woman I spoke to from there is really encouraging me in this.

 

Thank you for your kind words...your encouragement, and your help.

 

 

 

Tru,

 

Oh sweetheart, your poor toe!!!! How did it get that bad. I know nothing about gangrene! Methinks you need a new general practitioner!!! You go find a new one of those, and I'll go find a new dermatologist!!!! How could he have missed that? It seems to me that would be fairly obvious. I'm so very sorry to hear this.

 

I can't see your av as I type this, but what type of dogs do you have? I think it is a cocker in the av, if I remember right.

 

I have Cavalier King Charles spaniels. I love those little furballs...they are a menace, but so cute.

 

I hope you begin feeling better and better. You know I wish you only good things.

xo

 

 

Jefa,

 

Thank you for the link. I actually ordered it through the library I used to work at, and it is on it's way!

 

I am anxious for it to get here...thank you for the link.

 

Today I wait for blood results. The next step on this road. Shelley's post has me feeling so much hope, I am afraid of it! LOL How silly that is.

 

It was very helpful to read that logically and statistically I should be in the 98%, not the 0-2%.

 

I got a sclero sticker for my car in the mail today...I plan to put it on. I'm considering attending the Piston basketball game with the Michigan group and meeting everyone. Everyone seems so nice, and dang it...accepting and wonderful...why wouldn't I want to meet them.

 

Thank you all again...so very much. I can't even begin to tell you the peace you have given me.

 

Karen

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Hello karen,

I wanted to welcome you to the forums! I am a little late in the game, but none the less, am so glad that we found you. As you can see, there is so much support to be had here, and tons of great and encouraging info on the ISN. It sounds like you have a good team of doctors and that is esential!

 

Gentle hugs &


*WestCoast*

 

********

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Truman, I am so sorry to hear about your toe...its hard to believe that your doctor missed gangrene! However, you caught it before it spread too far. Take extra special care of those toes...and try to enjoy this time with your pups!


*WestCoast*

 

********

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Erin,

 

Thank you for the kind welcome.

 

I just heard from the gastro.

 

All my results are in, and all good. Nothing showing in any blood tests that would indicate systemic.

 

I feel MUCH relief in this. I'm glad the gastro had me go have them, so I'd not fret through the weekend.

 

So it looks it may only be the morphea for me....and I'll stay on that, and do what I have to to make that better.

 

Also will be seeing the rheumatologist to be doubly sure I am doing as I should.

 

Hugs all around, and let us all now form a circle (or are you all line dancers?) and do the happy dance!

 

~Karen

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Hi Karen:

 

My dogs are cocker spaniels and I love them to death. I absolutely adore Cavalier King Charles spaniels.. That is hopefully, going to be the next addition to my family. They are just the cutest little sweeties.

:rolleyes:


Tru

 

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

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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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