The last few days have been frustrating to say the very least. Positive Polly went on vacation and Negative Nancy is using my brain as her personal play ground. The negative thoughts make in almost impossible to function. They seem to strangle me in to submission. In these times I usually pray so much it feels like I pray all day. Today has been one of those days. I skipped a family gathering because of all the worrying and negative thoughts going threw my brain today over whelming me like a flood. As soon as my husband and kids left I turned on some good o praise music. I connect to songs a lot. I sit here listening to Hold me Jesus by Rich Mulllins and Architecture by Jonathan Thulin over and over. I want the only overwhelming flood in my life to be the love of Jesus Christ. As the song Hold me Jesus says I want Jesus to be my prince of peace I want him to overwhelm me with his peace and presence. Architecture has been a favorite of mine because its so true. We are so focused on the broken pieces we fail to see the the beauty in the small but significant building block God has put in out lives. Its no coincidence that because you made one decision something else fell in to place. God has built us up so far and if we could just get past our current hardship and look back at all that God has done for us all those building block set in place we can see the beauty and the grace in the little things he has done for us maybe we wouldn't feel so hopeless when Negative Nancy decides to take a stroll in our minds.
I know this skin condition is just a building block for something great. He has not left me nor forsaken me.
Jesus loves me this I know.
Saturday, July 19, 2014
Wednesday, July 16, 2014
Flesh eating treatment.
As you know my know I chopped my hair off yesterday in hope of starting treatment for my Folliculitis Decalvans. So yesterday evening I ran to the pharmacy to get my medications. Of course I get there and the topical stuff was ready but the antibiotic was stuck in insurance stuff. I was cool with that just because for some reason I have a weird feeling with this whole antibiotic for the rest of my life or until the FD becomes inactive. By no means am I a natural person but I'm not so sure about this one.
Anyways I made it home with this topical solution that was described by the doctor to me as "like WD-40. Yes you know your in the south when a DOCTOR compares anything to WD-40! Can I just say if it would have come with the tiny straw thing on the end like WD-40 it would have made it easier. The topical solution comes in a bottle that looks like an eye dropper container. Instructions are to squirt on area and rub it in 2 times a day. MY ISSUES with this .....#1 How am I supposed to rub it in when my hair is there all I can kinda get done is patting it so it doesn't run. An d also almost half of my head has FD on it I feel like I might as well take a bath in this stuff!....... #2 I was nervous about how it would make my hair look ... yep 1 day of applications look about like 3 day unwashed hair. and last but not least.... #3 IT STINGS!! DEAR GUSSY does it sting!! Yes 2 times a day I have to cover my head in what feels more like Flesh Easting Topical solution!!! You know when something stings and it subsides a little and then it itches for a little while after? YA as if my head didn't itch enough this Flesh eating solution makes it worse! Gotta love modern medicine......or not.
I would like to mention I received so much love and support yesterday when revealing my "situation." Only a handful of family and friends knew what was going on before yesterday. Its not like I was afraid of being shunned or anything but as state in a previous post I was trying to down play it as much as possible especially until I had all the facts. We told the kids that I just have an ouchie on my head that I need to put medicine on all the time. I am so grateful for all the kind words the kind words. I know Im gonna kick this stuffs booty with the love and prayers of my army of supporters.
Anyways I made it home with this topical solution that was described by the doctor to me as "like WD-40. Yes you know your in the south when a DOCTOR compares anything to WD-40! Can I just say if it would have come with the tiny straw thing on the end like WD-40 it would have made it easier. The topical solution comes in a bottle that looks like an eye dropper container. Instructions are to squirt on area and rub it in 2 times a day. MY ISSUES with this .....#1 How am I supposed to rub it in when my hair is there all I can kinda get done is patting it so it doesn't run. An d also almost half of my head has FD on it I feel like I might as well take a bath in this stuff!....... #2 I was nervous about how it would make my hair look ... yep 1 day of applications look about like 3 day unwashed hair. and last but not least.... #3 IT STINGS!! DEAR GUSSY does it sting!! Yes 2 times a day I have to cover my head in what feels more like Flesh Easting Topical solution!!! You know when something stings and it subsides a little and then it itches for a little while after? YA as if my head didn't itch enough this Flesh eating solution makes it worse! Gotta love modern medicine......or not.
I would like to mention I received so much love and support yesterday when revealing my "situation." Only a handful of family and friends knew what was going on before yesterday. Its not like I was afraid of being shunned or anything but as state in a previous post I was trying to down play it as much as possible especially until I had all the facts. We told the kids that I just have an ouchie on my head that I need to put medicine on all the time. I am so grateful for all the kind words the kind words. I know Im gonna kick this stuffs booty with the love and prayers of my army of supporters.
Tuesday, July 15, 2014
The Transformation
I've been reflecting/worrying a lot about chopping off my hair. I have never been one to be attached to my hair but I guess since this was not my choice and more of a "Have to" it worried me more. The more time I had to think about it the more relaxed about it I got.
A few weeks ago a few of the middle schoolers I volunteer with spoke about their adventure at a church camp they went to. One said she was in desperate need of patience and she prayed about it a lot but got nothing. A counselor explained to her that sometimes when we pray for patience or self discipline it doesnt mean that we will one day go to sleep and wake up QUEEN PATIENCE or QUEEN OF SELF CONTROL but that God will give you opportunities to be patient. Now if you asking how this ties in to the Alopecia thing and cutting my hair off here is the connection. For years I have struggled with Depression and Anxiety and Low Self Esteem. For years I have prayed for God to take these things away. More recently I have really prayed that God give me the confidence that I need to really lead these middle school kids to Christ. I wanted to be the true hands and feet of Christ and the low self confidence was not helping. I do believe the Alopecia was Gods was of giving me an opertunity to boost my self confidence. I had to force my self to cut my hair and not hide behind my pony tail anymore. The ponytail no longer hides the bald spot. My hair dresser cut it in a way I would have some coverage even though I cam prepared to almost shave it. I know it will show sometimes and I am 5 foot tall so everyone sees the top of my head but this is my chance to rock this. This is y chance to gain that self confidence. I feel like truly letting it all hang out and be me. There is a big bald spot but the recent progression of my scarring alopecia has been a ring around my head. I just joke that God just wanted to pre-fit my halo for when I get to heaven. I am choosing to joke about it and not let it get me down. I will choose not to sweat the small stuff. I choose not to make my disease and my worried bigger than my God because my God is way bigger than this and he did not design me to be worried but to have a sound mind. Here is my before and after
er.
A few weeks ago a few of the middle schoolers I volunteer with spoke about their adventure at a church camp they went to. One said she was in desperate need of patience and she prayed about it a lot but got nothing. A counselor explained to her that sometimes when we pray for patience or self discipline it doesnt mean that we will one day go to sleep and wake up QUEEN PATIENCE or QUEEN OF SELF CONTROL but that God will give you opportunities to be patient. Now if you asking how this ties in to the Alopecia thing and cutting my hair off here is the connection. For years I have struggled with Depression and Anxiety and Low Self Esteem. For years I have prayed for God to take these things away. More recently I have really prayed that God give me the confidence that I need to really lead these middle school kids to Christ. I wanted to be the true hands and feet of Christ and the low self confidence was not helping. I do believe the Alopecia was Gods was of giving me an opertunity to boost my self confidence. I had to force my self to cut my hair and not hide behind my pony tail anymore. The ponytail no longer hides the bald spot. My hair dresser cut it in a way I would have some coverage even though I cam prepared to almost shave it. I know it will show sometimes and I am 5 foot tall so everyone sees the top of my head but this is my chance to rock this. This is y chance to gain that self confidence. I feel like truly letting it all hang out and be me. There is a big bald spot but the recent progression of my scarring alopecia has been a ring around my head. I just joke that God just wanted to pre-fit my halo for when I get to heaven. I am choosing to joke about it and not let it get me down. I will choose not to sweat the small stuff. I choose not to make my disease and my worried bigger than my God because my God is way bigger than this and he did not design me to be worried but to have a sound mind. Here is my before and after
Saturday, July 5, 2014
Pondering......
I have never been one to worry physical appearance much. I mean I
wanna match and stuff but I am not the type who puts on make up everyday
and dresses up everyday with gorgeous styled hair. I am a jeans and a
tshirt kinda gal with a ponytail every day but Sundays to church. Even
Church has been seeing more and more pony tails since my bald spot has
been getting bigger. I am seriously pondering full on almost shave. I
wanna be able to treat this THING before it take all of my hair
permanently. I know it will be a HUGE change but I think it will be
worth it. I mean my grandmother lost her hair when she was battling
cancer and she just wore a turbine. I have just decided I am gonna save my money and try to buy some super cute scarves and head bands to make my head feel not so naked. I would rather not ware a wig for the fact that it is not me.... And I am kinda like a 3 year old...its itchy its to tight....it feels weird. Ya Im sensitive that way.
The only concern I do have is the look of this alopecia kinda looks like when my husband gets a bad case of poison ivy and the puss pockets burst and dry up and it clumps all the hair up. I also don't want to scare the kids at school either. I am hoping cutting it off a month and a half before school starts will give it time to grow back a little, give me time to get comfortable in my new hair or lack there of, and also try to get this THING under control.
The only concern I do have is the look of this alopecia kinda looks like when my husband gets a bad case of poison ivy and the puss pockets burst and dry up and it clumps all the hair up. I also don't want to scare the kids at school either. I am hoping cutting it off a month and a half before school starts will give it time to grow back a little, give me time to get comfortable in my new hair or lack there of, and also try to get this THING under control.
Results day
I had to wait 10 days to get my biopsy back. That is like 4 million years to worriers! I think I prayed 24 hours a day in those 10 days. IT WAS BRUTAL!
The day finally came!!!!!! Pretty sure I got maybe 3 hours of sleep the night before. This time I took my husband with me to the doctor. We walked in and the doctor took out the stitches while he was proceeding to tell me what the results of the biopsy was. I really felt like it was an episode of Charlie Brown all I heard from the doctor was "Whaaaa Whaaaa Whaaaa Whaaa Whaaaa." He actually did say I have a very rare kind of scarring alopecia called folliculitis decalvans. He gave me an oral antibiotic and a topical steroid. He said I would have to clear my hair to the scalp then squirt the steroid on the scalp and rub it in kind like WD-40. He gave me to RX for both because he said he knew my insurance company would fight in and the other one I could send in to the the pharmaceutical company. SO not only do I have to go threw this weird THING on my head but now I have to fight with my insurance company as well! GREAT!! I had to ask him since it is on such a large part of my head how on earth am I supposed to treat it all. by just squirting and rubbing it in. It would take FOREVER! The Doctor said it would be a challenge and cutting my hair off would make it a little easier.
The day finally came!!!!!! Pretty sure I got maybe 3 hours of sleep the night before. This time I took my husband with me to the doctor. We walked in and the doctor took out the stitches while he was proceeding to tell me what the results of the biopsy was. I really felt like it was an episode of Charlie Brown all I heard from the doctor was "Whaaaa Whaaaa Whaaaa Whaaa Whaaaa." He actually did say I have a very rare kind of scarring alopecia called folliculitis decalvans. He gave me an oral antibiotic and a topical steroid. He said I would have to clear my hair to the scalp then squirt the steroid on the scalp and rub it in kind like WD-40. He gave me to RX for both because he said he knew my insurance company would fight in and the other one I could send in to the the pharmaceutical company. SO not only do I have to go threw this weird THING on my head but now I have to fight with my insurance company as well! GREAT!! I had to ask him since it is on such a large part of my head how on earth am I supposed to treat it all. by just squirting and rubbing it in. It would take FOREVER! The Doctor said it would be a challenge and cutting my hair off would make it a little easier.
The BIOPSY
Well the day came I was going to the Dermatologist. I took my mom with me because in my eyes she is a medical expert. She knew how to get the real questions answered and I knew in order to prove to my self that my doctor was COMPLETELY off his rocker in this diagnosis my mother could do it. Besides things like this don't happen to ME!
The doctor walks in looks at my head and says "ooo you do have some kind of scarring alopecia." Wait what?! Its just a "thing" but if I have to have Alopecia its SCARRING too! Scarring= permanent ugly SCARS like the ones on my knees from when I was a kid. WAIT WHAT! All I wanted to tell him was umm excuse me you must have the wrong person I dont get stuff like this.
The dermatologist then proceeded to tell me we would take a biopsy as soon as his nurse got back. HUH Biopsy= a chunk of removed....FROM MY HEAD!!! I didnt even have time to mentally prepare! You see the bad thing about "City Doctors" they do things on a much faster pace. But I had no idea it was this fast!! He sat me down on a tiny stool and numbed my scalp and began to cut away my hair!!! YES just met this man 3 minutes ago and he is already cutting my hair!!I felt almost violated like our patient doctor relationship was moving a bit to fast. I mean could he not bring me a coke and some chocolate make me feel atleast a LITTLE better before cutting my hair and slicing my head open? After cutting my hair he as my mom put it "he took a cookie cutter thing to you head and just pressed down then out came some scalp!" Great mental image from that one right! The doctor starts giving me stitches and decides to tell me it should be only one MAYBE two stitches. Yea ended up being four and he said "I couldnt get it all the way closed so be careful but you can wash your hair normally." I don't know about other women but when I was my hair I scrub my scalp with my finger tips. How am I supposed to do that with a gaping hole in my head? UHHHGGG I was just gonna have to figure it out and decided to tell my self that he probably didn't know what he was talking about either and I would get the biopsy report back a WA-LA it will be just dry weird skin and the doctor will say here is some special shampoo and Ill be on my way.
The doctor walks in looks at my head and says "ooo you do have some kind of scarring alopecia." Wait what?! Its just a "thing" but if I have to have Alopecia its SCARRING too! Scarring= permanent ugly SCARS like the ones on my knees from when I was a kid. WAIT WHAT! All I wanted to tell him was umm excuse me you must have the wrong person I dont get stuff like this.
The dermatologist then proceeded to tell me we would take a biopsy as soon as his nurse got back. HUH Biopsy= a chunk of removed....FROM MY HEAD!!! I didnt even have time to mentally prepare! You see the bad thing about "City Doctors" they do things on a much faster pace. But I had no idea it was this fast!! He sat me down on a tiny stool and numbed my scalp and began to cut away my hair!!! YES just met this man 3 minutes ago and he is already cutting my hair!!I felt almost violated like our patient doctor relationship was moving a bit to fast. I mean could he not bring me a coke and some chocolate make me feel atleast a LITTLE better before cutting my hair and slicing my head open? After cutting my hair he as my mom put it "he took a cookie cutter thing to you head and just pressed down then out came some scalp!" Great mental image from that one right! The doctor starts giving me stitches and decides to tell me it should be only one MAYBE two stitches. Yea ended up being four and he said "I couldnt get it all the way closed so be careful but you can wash your hair normally." I don't know about other women but when I was my hair I scrub my scalp with my finger tips. How am I supposed to do that with a gaping hole in my head? UHHHGGG I was just gonna have to figure it out and decided to tell my self that he probably didn't know what he was talking about either and I would get the biopsy report back a WA-LA it will be just dry weird skin and the doctor will say here is some special shampoo and Ill be on my way.
When in doubt ......DOWN PLAY!
6 years ago I found a "weird' spot on my head while I was pregnant with my son. I never went to the doctor for it thinking it was just dry skin or just my scapls weird reaction to waring my hair in a ponytail all the time. I did go in to the doctor once and he told me to put neosporin on it because it just looked like a leason on my scalp. Over the years it got bigger and bigger and soon I got to embarrassed to even go and get my hair cut. A year and a half has come and gone and I knew it was time to either get my hair cut or go back to the doctor. Well the day came I was going in to see the doctor for a check up anyways so I might as well metion the spot on my head. ( in my brain I was trying to minimize the annoying "thing" on my head as much as possible.) The doctor came in and did his thing and when he went to go look at my head he says "ooh wow you do have some hair loss here don't ya" In my head all I could thing was "No No you cant say that its a small "thing" that will be gone in jiffy" The doctor gave me the devastating news that I may have Alopecia Areata and he was sending me to a dermatologist because he really wasnt sure.
Now you have to under stand that I am from a small town. Most of the time to get better medical care we drive an hour and a half east. It isnt that the doctors arent great out here it is just in the "City" they have better/newer equipment easier access to all the fancy tests and things. I had a month till I saw the Dermatologist in the City so for a month Google and I had a love hate relationship. You know what I mean. I am the type of person that is a doctor says he thinks I have something I am going to go home ware out my keyboard and google what he said to try to educate myself. I googled Alopecia Areata TERRIFIED ME! So in my brain I kept thinking noooo he is a small town doctor he only said he thought that is what I had. He is probably totally off base with this one of course mean while I was still googling and scaring my self to no end.
Now you have to under stand that I am from a small town. Most of the time to get better medical care we drive an hour and a half east. It isnt that the doctors arent great out here it is just in the "City" they have better/newer equipment easier access to all the fancy tests and things. I had a month till I saw the Dermatologist in the City so for a month Google and I had a love hate relationship. You know what I mean. I am the type of person that is a doctor says he thinks I have something I am going to go home ware out my keyboard and google what he said to try to educate myself. I googled Alopecia Areata TERRIFIED ME! So in my brain I kept thinking noooo he is a small town doctor he only said he thought that is what I had. He is probably totally off base with this one of course mean while I was still googling and scaring my self to no end.
This Is ME.
My name is Lorna I live in a small town in Oklahoma with my Husband and two kids. Connor my son is 6 and Zoie my daughter is 7. I am a stay at home mom but during the school year I love substitue teaching at the local schools.
I am writing this blog as a public diary in hopes while dealing with my own struggle with Scarring Alopecia Folliculitis Decalvans someone else will also find hope. If you have any questions or comments I am always available. I am a very open and honest person.
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