I wanted to update you all who check in with me regularly. Since our circumstances have changed and we are going through a new journey I wanted to start a new blog. You can find me at this new address:
http://ashlieghlevesqueblog.wordpress.com
Please keep in touch with me and share our story. I would like to connect with more people who have found themselves in our situation as well!
Sincerely,
Ashliegh
I'm a normal girl living in an abnormal life. These are my crazy adventures through it all.
Thursday, August 8, 2013
Thursday, July 18, 2013
CORRECTION
In my previous post on hidradenitis I talked about taking an Iron supplement for HS. It's actually Zinc! I wanted to make sure I corrected that. Thanks all! Have a wonderful weekend!
Saturday, July 13, 2013
OFF TOPIC: Discussion on Hidradenitis
I've mentioned this before in my blog posts but I also have a skin condition called Hidradenitis Suppurativa or HS for short. The disease is actually fairly common but some people don't know they have it and some are too afraid to come out about it because it's not a pretty disease. Let's answer some questions regarding what this exactly is, who it affects, and most importantly how to manage it. Please don't rely or substitute any information in this blog as medical advice. This is just what I've done, what I've learned and now what I'm doing to help my quality of life.
*All of this information can also be found on the HS foundation's webpage. Visit http://www.hs-foundation.org to learn more. Or at http://www.dermnetnz.org/acne/hidradenitis-suppurativa.html.
What is Hidradenitis Suppurativa (HS)?
It is an inflammatory skin disease that causes painful and chronically recurring, deep-seated follicular nodules, abscesses, scarring, sinus tracts and discharge. It is caused by weak and poorly formed sweat glands that instead of releasing sweat, clog and burst underneath the skin causing the before mentioned issues. The HS foundation quotes only 1% of the population is affected but new research is showing as many as 1 in 300 people are affected.
The areas of the body that are usually diseased are the under arms (in my case - but just my left), groin, buttocks and under the breast. It's a disease that doesn't go away but can be managed appropriately with the right care and prevention. Patients can present with a single affected area or multiple affected areas, and in very extreme cases it can spread to larger areas of the skin.
Who does HS affect mostly?
Women are affected by HS three times as often as men. Smoking and obesity exacerbate the issue. HS mostly occurs between 20-40 years of age and coincides with a post-pubertal rise in androgen levels. It is rarely seen before puberty and after menopause.
How can you manage HS?
Well, my disease is rated Hurley State II (see http://en.wikipedia.org/wiki/Hidradenitis_suppurativa for more info). There are three stages. So I will give a breakdown of what I've learned and done and you can take it for what it is. Hopefully it will help you too!!!
Well, I hope this was helpful for those of you who have this horrible disease. Please get the help you need. Also, this can be very emotionally exhausting and daunting. Please make sure you are healthy mentally as well dealing with this. I can now talk about it more openly, as I realize this disease is out of my control. I can only do so much and I didn't cause this - you didn't either. Unfortunately my next steps include surgery for scar tissue and sinus tract removal under my left arm. But with that and some lifestyle changes I'm looking pretty good for the next 20 years until menopause kicks in :). If you have any questions or just need some help please feel free to email me at ashlieghlevesque@gmail.com. I'm more than happy to help on this and infertility or multiple losses. God Bless.
*All of this information can also be found on the HS foundation's webpage. Visit http://www.hs-foundation.org to learn more. Or at http://www.dermnetnz.org/acne/hidradenitis-suppurativa.html.
What is Hidradenitis Suppurativa (HS)?
It is an inflammatory skin disease that causes painful and chronically recurring, deep-seated follicular nodules, abscesses, scarring, sinus tracts and discharge. It is caused by weak and poorly formed sweat glands that instead of releasing sweat, clog and burst underneath the skin causing the before mentioned issues. The HS foundation quotes only 1% of the population is affected but new research is showing as many as 1 in 300 people are affected.
The areas of the body that are usually diseased are the under arms (in my case - but just my left), groin, buttocks and under the breast. It's a disease that doesn't go away but can be managed appropriately with the right care and prevention. Patients can present with a single affected area or multiple affected areas, and in very extreme cases it can spread to larger areas of the skin.
Who does HS affect mostly?
Women are affected by HS three times as often as men. Smoking and obesity exacerbate the issue. HS mostly occurs between 20-40 years of age and coincides with a post-pubertal rise in androgen levels. It is rarely seen before puberty and after menopause.
How can you manage HS?
Well, my disease is rated Hurley State II (see http://en.wikipedia.org/wiki/Hidradenitis_suppurativa for more info). There are three stages. So I will give a breakdown of what I've learned and done and you can take it for what it is. Hopefully it will help you too!!!
*FIRST AND FOREMOST: this disease is not caused by the patient or their hygiene. Previous doctors had told patients they were not clean enough and thats what caused or made it worse. This is not true but the following are things you can do to help.
*Make sure you have a doctor who is experienced with the disease. You can find a specialist near you on the HS foundations website, that's where I found mine and she is awesome. If you are looking for a doctor in New Hampshire look up Lynette Margesson out of Manchester.
*Take Vitamin C daily!
*You can take birth control, suppressive antibiotics, Iron, and drugs like accutane to help control it. (NONE OF THESE THINGS ARE PREGNANCY SAFE SO IT WOULD BE AFTER BABY!!!!! - IF YOUR ON THAT ROAD OF COURSE)
*Wash with antibacterial, non scented soap - I use Safeguard. Don't use antiperspirants or even deodorant if its under your arms! For my unaffected underarm I use Speed Stick Regular Deodorant for men...why? because it's antiperspirant free!
*I wash the affected areas with 10% Benzoyl Peroxide acne face wash daily. It's the strongest I can find. And I also apply a 10% acne cream everyday.
*Wear loose fitting cotton clothing. Any friction will make it worse because with the disease we have is caused by ineffective and poorly formed sweat glands that clog and burst. With friction your just helping it along.
*Avoid dairy like the plague. Dairy feeds the disease. You can still have eggs.
*Paleo diet is great for us. (Carbs, refined sugar and gluten are also bad for this disease.) Avoid anything that has additives/hormones in it.
*Don't shave the area. I use a feminine hygiene clippers and cut the hair short but not against the skin.
*If you have a flare up and yours drain on their own, to help the process along, you can soak in a hot bath. When I have flare ups I wear a dressing with a little gauze with medical tape over it. I use silk tape because it irritates my skin less.
*I've heard eating Tumeric helps.
*Don't try to squeeze or pop affected areas, you'll just make it worse!
*Make sure you have a doctor who is experienced with the disease. You can find a specialist near you on the HS foundations website, that's where I found mine and she is awesome. If you are looking for a doctor in New Hampshire look up Lynette Margesson out of Manchester.
*Take Vitamin C daily!
*You can take birth control, suppressive antibiotics, Iron, and drugs like accutane to help control it. (NONE OF THESE THINGS ARE PREGNANCY SAFE SO IT WOULD BE AFTER BABY!!!!! - IF YOUR ON THAT ROAD OF COURSE)
*Wash with antibacterial, non scented soap - I use Safeguard. Don't use antiperspirants or even deodorant if its under your arms! For my unaffected underarm I use Speed Stick Regular Deodorant for men...why? because it's antiperspirant free!
*I wash the affected areas with 10% Benzoyl Peroxide acne face wash daily. It's the strongest I can find. And I also apply a 10% acne cream everyday.
*Wear loose fitting cotton clothing. Any friction will make it worse because with the disease we have is caused by ineffective and poorly formed sweat glands that clog and burst. With friction your just helping it along.
*Avoid dairy like the plague. Dairy feeds the disease. You can still have eggs.
*Paleo diet is great for us. (Carbs, refined sugar and gluten are also bad for this disease.) Avoid anything that has additives/hormones in it.
*Don't shave the area. I use a feminine hygiene clippers and cut the hair short but not against the skin.
*If you have a flare up and yours drain on their own, to help the process along, you can soak in a hot bath. When I have flare ups I wear a dressing with a little gauze with medical tape over it. I use silk tape because it irritates my skin less.
*I've heard eating Tumeric helps.
*Don't try to squeeze or pop affected areas, you'll just make it worse!
*Don't smoke.
*Avoid excessive sweating for obvious reasons. Swimming is a great exercise for HS patients.
*If your overweight (like me) or obese try swimming and diet changes like Paleo. Losing a few pounds can help you manage the disease better.
Well, I hope this was helpful for those of you who have this horrible disease. Please get the help you need. Also, this can be very emotionally exhausting and daunting. Please make sure you are healthy mentally as well dealing with this. I can now talk about it more openly, as I realize this disease is out of my control. I can only do so much and I didn't cause this - you didn't either. Unfortunately my next steps include surgery for scar tissue and sinus tract removal under my left arm. But with that and some lifestyle changes I'm looking pretty good for the next 20 years until menopause kicks in :). If you have any questions or just need some help please feel free to email me at ashlieghlevesque@gmail.com. I'm more than happy to help on this and infertility or multiple losses. God Bless.
Wednesday, June 19, 2013
A Wound Never Closed
First and foremost, to our close friends we have not told yet, I'm sorry you are finding out this way. Last week on Thursday night I took a pregnancy test. To our surprise it was positive. A completely natural pregnancy! Scott had just gotten to New England two weeks prior and I knew if I was going to ovulate it would be then. And we had missed each other obviously. Well subsequently, we got pregnant and to repeat history for the 6th time I'm now miscarrying. It's not really a surprise considering my "horrible" history, as my new nurse put it. But it does bring up some serious issues. We now know that obviously there is some serious underlying issue. Every miscarriage, except our ectopic a couple months ago, has been between 4-6 weeks pregnant. We know it's an implantation issue. But we don't know where its coming from. We are blessed to have some amazing insurance through my new employer that gives us access to some of the best specialists in the country. God made no mistake by bringing us here. (For those of you who don't know the news I was suppose to share a couple months ago was that we moved back to Scott's home of Boston, MA).
So when we are ready, we will see a specialist. But it brings me to the very frightening fact that no matter what "it" is, having a child for us will not be easy at all. It hasn't obviously been, but now it's a whole new ballgame. For those of you who are thinking, well why don't you just adopt? You know, we could if we had $20,000 and we were emotionally prepared to give up our dream of bringing a child into this world biologically. Maybe its selfish to think that way, but it's not fair to the child we would adopt if we did it and we weren't ready. Which is why we ended up not adopting last year. Because I knew I wasn't ready.
So for now we are taking it one day at a time and trying to comprehend where this might lead. We are having some very challenging conversations about possible options that are now available to us and what we are okay with. Please keep us in your thoughts and prayers as we begin to make some very difficult decisions.
So when we are ready, we will see a specialist. But it brings me to the very frightening fact that no matter what "it" is, having a child for us will not be easy at all. It hasn't obviously been, but now it's a whole new ballgame. For those of you who are thinking, well why don't you just adopt? You know, we could if we had $20,000 and we were emotionally prepared to give up our dream of bringing a child into this world biologically. Maybe its selfish to think that way, but it's not fair to the child we would adopt if we did it and we weren't ready. Which is why we ended up not adopting last year. Because I knew I wasn't ready.
So for now we are taking it one day at a time and trying to comprehend where this might lead. We are having some very challenging conversations about possible options that are now available to us and what we are okay with. Please keep us in your thoughts and prayers as we begin to make some very difficult decisions.
Saturday, February 23, 2013
How Did I Forget THIS!?
I posted yesterday about musical therapy and I forgot my favorite one!? How, well who knows. There is this song that every time I hear it I think of my amazing husband Scott. He is such a great man who has been the bestest friend and strongest supporter during all the miscarriages and ups and downs of infertility. It reminds me that I wont give up on him, he wont give up on me and we won't give up on our dream together. Most importantly, we are already our own little family. Just the two of us and that is the most important thing. We are committed 100% to each other and our life together and I have the best person in THE UNIVERSE (no I'm not kidding - he rocks that much!) to experience it with. I am blessed and I love this crazy, fun, hilarious and seriously attractive man so much! This one's for you babe and I love you!!!!!!!! Btw, heres an updated pic of us last week celebrating an amazing Valentine's Day :) - and of course the song. (I'm gonna make it a point to post more pics). And good gracious this song is so amazing. Every time it gets to me and the video is awesome. Whatever challenge your facing - watch this video...it will encourage you! Enjoy!
Awesome huh?! Like I said, how did I forget it. Thanks for reading and heres our updated photo!
XO,
Ash
Awesome huh?! Like I said, how did I forget it. Thanks for reading and heres our updated photo!
XO,
Ash
Better Day - FINALLY!
*sigh*
So today was a better day. I woke up with less pain and little to no nausea. FINALLY, I think the Methotrexate injection from Monday is starting to wear off. I seriously hope that it's working. A lot of women have to get a second injection and I think if I do I will cry. I have never in my life wanted to see a low hcG number on that lab sheet!!!
I was also stretched to do something I wouldn't normally do today. I've been holding on to something worth monetary value that I don't have plans to put to good use in the near future. I came across a person who was in need of it and I felt I needed to step out in faith and help provide for them. It's something I didn't plan on giving away but I am glad I am. I'm so excited to bless someone else in their time of need! It's a little scary because I may have used it in the future - but I may not. I know that's extremely vague but I cannot go into detail for privacy reasons.
All in all, I'm glad to be feeling a little bit better and more like myself. I'm also excited to be helping other people and seeing the positive response from everyone reading this blog! Thank you all for reading and please share! We also have more exciting news to share at a later date - keep following and you will find out later! :)
Lastly, I read some old posts and realized a few things. Post D&C last year we never got any answers. No fetal tissue was found. I kind of left that out there without ever updating anyone. Also, we did put the adoption on hold, but we still talk about that as an option in the future. Right now, we are just focused on getting my hcG down and getting back to baseline. I also have a skin condition under my left arm called Hidradenitis. It's a horrible disease that causes my sweat glands to clog and get infected. It's totally out of my control and when they get infected often times it can cause an abscess. Since I've had multiple abscesses (3) in the past six months, definitive surgery is being recommended. And until I can get surgery, I have to be put on suppressive antibiotics. So all that to say health is the main focus for now. My hidradenitis is caused from a hormone imbalance. Another lovely side affect of PCOS. Again, thank you ovaries. Love Ash :). As a little good news, this past IVF I weighed in 16 pounds lighter than the previous IVF. I still have a ways to go but I'm on the right track as far as that's concerned. Anyone else who has PCOS knows its very difficult for us to lose weight. So you know how challenging that was! ANYWAY- in the mean time Scott and I plan on doing lots of fun stuff together. Including watching Pitch Perfect for the bajillionth time tonight over some sugar free mint chocolate chip ice cream :). In moderation of course! Again, thanks for reading.
Stay tuned,
~Ash
P.S. For those hubbies out there experiencing all this crap (infertility/miscarriages) with their wives - I've asked Scott to write an entry soon so a "guys" perspective in this whole thing is shared and known. Can't wait to see what he writes!
So today was a better day. I woke up with less pain and little to no nausea. FINALLY, I think the Methotrexate injection from Monday is starting to wear off. I seriously hope that it's working. A lot of women have to get a second injection and I think if I do I will cry. I have never in my life wanted to see a low hcG number on that lab sheet!!!
I was also stretched to do something I wouldn't normally do today. I've been holding on to something worth monetary value that I don't have plans to put to good use in the near future. I came across a person who was in need of it and I felt I needed to step out in faith and help provide for them. It's something I didn't plan on giving away but I am glad I am. I'm so excited to bless someone else in their time of need! It's a little scary because I may have used it in the future - but I may not. I know that's extremely vague but I cannot go into detail for privacy reasons.
All in all, I'm glad to be feeling a little bit better and more like myself. I'm also excited to be helping other people and seeing the positive response from everyone reading this blog! Thank you all for reading and please share! We also have more exciting news to share at a later date - keep following and you will find out later! :)
Lastly, I read some old posts and realized a few things. Post D&C last year we never got any answers. No fetal tissue was found. I kind of left that out there without ever updating anyone. Also, we did put the adoption on hold, but we still talk about that as an option in the future. Right now, we are just focused on getting my hcG down and getting back to baseline. I also have a skin condition under my left arm called Hidradenitis. It's a horrible disease that causes my sweat glands to clog and get infected. It's totally out of my control and when they get infected often times it can cause an abscess. Since I've had multiple abscesses (3) in the past six months, definitive surgery is being recommended. And until I can get surgery, I have to be put on suppressive antibiotics. So all that to say health is the main focus for now. My hidradenitis is caused from a hormone imbalance. Another lovely side affect of PCOS. Again, thank you ovaries. Love Ash :). As a little good news, this past IVF I weighed in 16 pounds lighter than the previous IVF. I still have a ways to go but I'm on the right track as far as that's concerned. Anyone else who has PCOS knows its very difficult for us to lose weight. So you know how challenging that was! ANYWAY- in the mean time Scott and I plan on doing lots of fun stuff together. Including watching Pitch Perfect for the bajillionth time tonight over some sugar free mint chocolate chip ice cream :). In moderation of course! Again, thanks for reading.
Stay tuned,
~Ash
P.S. For those hubbies out there experiencing all this crap (infertility/miscarriages) with their wives - I've asked Scott to write an entry soon so a "guys" perspective in this whole thing is shared and known. Can't wait to see what he writes!
Friday, February 22, 2013
Musical Therapy
This is for those of you out there struggling with infertility and pregnancy or infant loss. I've talked to many women online and some of these songs were recommended. I hope you find healing in The Lord and through music. I added a few of my favorites as well...enjoy. P.S. you might wanna grab a tissue or two just in case. XO, Ashliegh
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