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Kicking Cancer Out!

Posted by on Aug 8, 2015 in Cancer, Gastroenterology, MItochondrial Disease, Muscular Dystrophy, Psychology, Rhabdomyolysis | 24 comments

Kicking Cancer Out!

Hello Everyone! I haven’t been blogging for awhile now. One I felt like I needed a break and two another health crisis has come up on December 1, 2014.  I know on Face Book a lot of people have been wondering why I have chopped my hair off into two different styles.  I also been getting a lot of private messages from friends wondering whats going on. Well I am here to tell you if you don’t know already, I have cancer. Yes I did say cancer. I was having some issues late last year around October 2014 with gynecology issues. I was starting to lose weight, really fatigue, having a lot menstrual issues even on a contraceptive, and unexplained vomiting. I saw my GI doctor and my PCP and they were not sure what was going on, as all my lab work was normal.  I went to my OBGYN and told him what was going on and he finally wanted to do a D&C procedure because my pap smears were normal, as well as two vaginal ultrasounds, abdominal ultrasound,  and even CTSCAN.  I had my D&C the Friday before Thanksgiving of 2014. I did not go home for Thanksgiving because of this. I tried to convince him to do it after and he said no lets just get it done. So I did. I had a follow up to make sure all was ok on Monday right after Thanksgiving of 2014. At this appointment he wanted to make sure all was healing and it was. He said he wanted to talk to me in his office when I got dressed. Went to his office all happy with smiles and sat down. He said well we took this out and said this is very difficult to say. We found a tumor inside the uterus and it’s grade 2 cancer. I just looked at him and said can I get a break…and started to cry. From that time I was in a spiral going downhill. He said I needed to see an OBGYN oncologist and here are 2 names.  I went to work that next day and I told my supervisor and she was floored. As many people have thought it was the Muscular Dystrophy (MD)  it wasn’t.  At this time only my parents and three friends  new. I was so confused and mentally I needed to figure this all out in my head. If you haven’t gone through the process of this diagnosis personally it is very hard to comprehend. Unlike the MD, this process is so fast and feels like you’re in a massive whirlwind going non stop. I felt like my mind would never shut off with all the if’s, and’s, and but’s. It was just one thing after another, after another and after another. I am very nervous to write this on my blog as I was with the rhabdomyolysis. Also, I feel like it is difficult to write about the female anatomy. I seems like many of us don’t speak freely and are afraid to speak about the female anatomy or gynecologic issues. So I will keep it to a minimum. If you read this, please do not write I am sorry to hear this news. Don’t be sorry for me, not like it’s exciting news (lol) but I am grateful I...

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Alittle Bit of July with Alittle Bit of Everything.

Posted by on Aug 20, 2014 in Allergies, Diagnosis, Exercise, Fructose Malabsorption/Intolerance, Gastroenterology, MItochondrial Disease, Muscular Dystrophy, Psychology, Work outs | 4 comments

Alittle Bit of July with Alittle Bit of Everything.

July of 2013 rolls around and all in all everything is pretty much fine. I decided to let loose and have a alcohol beverage on the 4th of July and it did not go over very well. I got sick and the next day wasn’t good either. I had a pina colada and shouldn’t have because of the ingredients in it. It had some fructose ingredients in it. Didn’t think it would bother me that much but it sure did. I also did a circuit training which constisted of tricep ropes, step ups, incline dumbells, deadlifts, standing lat pull down, pilate squats, up right rows and walked 30′ after. I did try to jog about 4 times for 10-20ft. During that little walk/jog I had to stop because the pressure and pain in calves came back and had to stop. July 7th again I did a circuit training and mixed it up. This time I wanted to try single leg hamstring curls on the ball laying on back and dips with feet on the ball. Which I did but could only complete 1 set of 10. I’ll take it. It’s better than nothing. Progress. After this circuit training I did do an hour of yoga. I completed it but I was feeling off and today in yoga we held the poses for a longer time and my body does not like that at all. My body will get stuck in those positions from the myotonia muscular dsytrophy and it can be painful to move out of the position. Which once I fell over because of it. Oppppppssssss. So for the rest of class I did not hold poses very long and did a slow flow. July 11th I went to see my pychologist for the first time in a very long time. It felt great to go and I even told her what a co-worker said to me. Of couse during this time I had to call of work for doctor appointments or in general if I was not feeling good. Which I do have FMLA for my condition. But my co-worker was leaving for the day and he stopped and said, I don’t think you have a muscle disease and you are faking it. There is no way you have that many doctor appoinments and it’s pretty convienient when you call off on Moday from the weeked because you were at the Muscle Walk. (Btw, this was almost a year ago) I said well thanks for keeping track of my days for me. He said he wasn’t and didn’t care about my condition at all. Or me faking my condition and doesn’t care what happens to me. I said for someone who does not want any part of it you are being a part of it right now. So we are done with this conversation and never ever talk to me again.  I did report this to my boss because he has no right to say or do what he did. Then a month later I had to have a meeting with my co-worker and bosses because there was still issues. I basically told him in front of my bosses that I have no respect for him, and I am just tolerating you because of work. But I promise you...

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Some Progress with Working Out

Posted by on Aug 1, 2014 in Exercise, Psychology, Work outs | 0 comments

Some Progress with Working Out

I will be clumping my April, May and June exercises together. The month of April I worked out a total of seven times. April 7, 2013 I did a circuit trianing which included split leg russian squats, pilate squats, mountain climbers, planks, squats with bar, kick backs, forward raises, tricep rope, bicep, chest press, standing lat pull down, side planks. Did all exercises 3 sets of 10 times (3×10). 30′ of yoga on April 13th which the next day I did the same circuit training as the 7th.  April 16th I did more of a leg work out which consisted of dead lifts 40# 3×12, step ups 3×10, hip abdduction machine 3×20, butt kicks 3×20 and  jump squats 2×10.  This is huge progress because 3 years ago I would not at have been able to do this at all with out landing on my a**.  I will say I am still not able to do a 90 degree squat. Tried to do some mini jumping and my legs started to stiffen up on me. That delayed reaction feels so weird. April 18th I worked on my back and biceps.  April 21st another circuit training  program and the 28th I walked 45′ total every 10′-15′ tried to jog 2′ twice. The second try I could not finish do to the pressure in my calves. The next day my calves were still painful and had that pressure feeling. So it is now 2 days later and my calves were still hurting badly. I emailed my doctor at the MDA and he said to get my CK levels and I did on May 1 but that is when they were normal high. I am wondering if I would have taken them two days ago if my levels would have been high. Now moving onto May which I think was a bust. I only did three workouts total for the month. I think I am already starting to feel fat. This is the most fustrating part of this whole thing…not being consistant. I can not hold myself accountable for not working out. Something so little can make me feel like crap and be in bed. I want to be more consistant and I am really trying but I have know idea how I feel from day to day.  Very hard determine and even to make plans.  May 16th I did a circuit training which consisted of dead lifts, tricep (ropes), upright rows, should press. lat machine, row machine, bicep curls incline bicep curls, and  chest fly machine.  May 19th and May 26th I did another circuit training for a total of 1 hour. Which is huge huge progress but in a way I would rather be working out 3-5 times a week for 30′.  I guess this is what I have to live with right now. June comes along and I will say this month was way better then May.  I was way more functional, which I love. Happy dance.  June 5th I did shoulders and triceps. June 9th had a great leg work out but had to end it fairly quickly because I did a lot of hard exercises. My legs will poop out faster then any other body part. June 10th I met a friend at the park and we walked probably about 2 miles.  June 13th I walked 2.5 miles and...

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My 3rd Year Anniversary. The Past and The Present.

Posted by on Jul 5, 2014 in MItochondrial Disease, Muscular Dystrophy, Psychology, Rhabdomyolysis | 1 comment

My 3rd Year Anniversary. The Past and The Present.

Well, it is finally June of 2013 and June 25 is my 3rd year anniversary! I guess you can say three is a charm? or not.  Last three years of my life, by far has been the most challenging for me to say the least. Tons of ups and downs, for sure mostly downs.  A lot of bitter/sweetness which in fact I really do have a muscle disease(s).  This picture paints that I am very happy but I should say I am not that excited.  Amazing how one can go through life and just discover this, plus it’s genetic. Then thinking about my early teens, high school, and even college days I knew something wasn’t right with my body. Going in and out of doctors during that time frame. I could just tell something was off.  Doctors could never pin point what it was and they basically said, “I have not a clue or maybe MS.” I got tested a lot for MS and always came out normal. Not to mention they just basically discover myotonia when I graduated from college. Looking back those really bad muscle cramps and muscle pain was something. Doctors would say make an appointment with me right when you get the cramps. The best way to explain this was trying to find a needle in a hay stack. If that makes sense. I had not a clue when they would appear/disappear. They could happen at any given point in time: at rest, driving, walking, sitting, working out, etc. But when the muscle cramp/pain would appear it was breath taking and debilitating. Which that may be an under statement. Just a couple months ago to have my full dignosis, I was not expecting a muscle disease… at all.  I am not sure what I was expecting to “have”  but I never thought in a million years I would have some type(s) of muscle diseases. Just because of how athletic I was, despite my symptoms back in the day.  Just really never occured to me…. it would be just that.  I  functioned very well just like a normal person.  Even as a Division I-A athlete and a level 9 gymanst. Amazing how you can go through life and have bouts of things off and on and never know until 37 years old. You just never know what life will bring you.  Many doctors from the MDA to the Cleveland Clinic said the body building was the perfect storm to bring it all out! The hours of working out, limited food intake, dehydrating myself , and determination to fight through all the pain. And if I never competed I may have never known. That is even more weird. I could have continued to go through life with all the above intermittent symtoms and never pin point what was wrong.  Along with heart conditions, diabetes, eye issues, slowly getting worse and unstable physically. Just thinking it was old age but in reality its from the MD. The month of June I had an appintment with my endocrinologist and PCP actually on the same day. Had to go see my endo because I had pain on my thyroid again. That’s what I called it because I was not sure if you could really have pain on your thyroid. Long story short, I broke a blood vessel in my thyroid and bleeding into nodule. More then likely I...

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Muscular Dystrophy Will Not Define Me, I Will Define IT!

Posted by on Jun 24, 2014 in Fructose Malabsorption/Intolerance, Gastroenterology, MItochondrial Disease, Modeling, Muscular Dystrophy, Psychology, Rhabdomyolysis | 0 comments

Muscular Dystrophy Will Not Define Me, I Will Define IT!

Well May 2013 rolls around and again not much to May.  Ever since I got a diagonsis seems like I am having more highs then lows.  If you have been reading my posts you can probably tell the progress I have made as well. I think I am actually starting to feel the progress or is it my head since they figured it all out.  Or is it a combination of both? Whatever it is, it’s working!  The only thing is I had to do is get my CK levels checked on May 2.  May 3 I got the results and my levels where at 173 with the range from 26-180 which is normal. YAY!!!! I love when my CK levels are normal!!! To those who have had rhabdo you know what I am talking about. I did get a phone call from my doctor and she wanted to know about the pressure in my calves. My calves often feel like there is pressure in them or a swollen feeling. My feet also get swollen from walking to long or even tyring to jog along with right hip pain. Usually my right calve is worse then my left calve. My doctor wanted me to keep track of how long it takes for the pressure to kick in because I may have anterior compartment syndrome. This month I also did a photoshoot to update my portfolio to get back into commercial modeling. I even got a spray tan by SprayChic to prep for my shoot. I love this place and they don’t make you look orange! That’s the best part, not only that but everyone that works there is nice.  I wanted to do this shoot because I can tell I was starting to loose weight by following my FODMAP diet. I was excited to get back out there and try and get work again. The photoshoot went well and I even started to cry because I was so proud of myself that I came climbing back on the horse again. This whole time I have been scared with all these body changes and what will people think of me? What will they say, “wow she let herself go and looks horrible” or “doesn’t she work out and looks fat.” Not even knowing what I have been through the last couple of years. Then telling people I can’t work out like I once did because I have Muscular Dystrophy (MD). I was still in a sensative spot with this and sometimes I don’t like to talk about it because I would start to cry. Mentally and emotionally I am still trying to soak all this up. Especially since I look normal and I can walk. Some reactions on people’s faces are priceless. If I had a hidden camera on me to get their expressions or comments I would be rich. Then the educational part to help people understand that I do have MD. I will elaborate on this in the future because this can be a post all to its self. If you get my drift. Moving on now…I am trying to get more social and have a social life. I think I am feeling more comfortable and confident in my skin to got out a bit more.  Not only that but I think I have enough energy without getting so fatigue. Sometimes I would...

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My Mom Has A Diagnosis.

Posted by on May 30, 2014 in Fructose Malabsorption/Intolerance, Gastroenterology, Muscular Dystrophy, Nutrition | 0 comments

My Mom Has A Diagnosis.

April 4, 2013 comes around and I know my mom has an appintment with the Cleveland Clinic on her genetic results.  I did call the doctor before hand to find out if she had muscular dystrophy (MD) or not.  The doctor told me she does have Myotonia Muscular Dystrophy Type 2 (MMD2) as well.  I told the doctor I will not say anything because I wanted it to come from him.  If I told her, she would not believe me at all. So I kept out of that one. I waited for a couple of days to call her and ask her beause I feel like she may have needed some personal time and space after finding out she has MMD2.  Asked her how the appointment went and she said I have the same muscle thing as you.  I said you do and how do you feel about it? She said well I don’t feel differently…just because I have this, I am going to still do what I want and have been doing. Which is great but not so great at the same time.  Maybe one day I will share but again this is my blog and not hers.  I don’t want to share her personal detailed health issues until she gives me permission.  I do respect my mom and her wishes.  On the other hand, it is crazy she was born with MMD2 and had no idea until the age 64, but it now all makes sense. Her gradual decline throughout the years and medical issues all makes sense now. If it wasn’t until I got really ill with rhabdomyolysis on June 25, 2010 almost three years ago she may never have known and I might have never known why the decline through our lives. April 11, 2013 I had to go see the eye doctor because with MMD2 it can cause cataracts. My primary doctor wanted an appointment.  Not only that but I also have mutations for Leber’s Herditiary Optic Neuropathy (LHON) which causes blindness but I have already seen an eye doctor who specializes in this and I will NOT become blind. So I was waiting to see the doctor and there was a lot of confusion on the proper doctor to see. Basically the doctor that started to see me was quite irritated and I was not sure why. Finally the HR person came in and said I saw the wrong doctor and I have to see this other doctor first and there was an error in scheduling etc, etc. I said I don’t care of XYZ but I do care that the doctor showed it and basically was a complete bitch to me for no reason.  I told the HR lady I don’t know why the doctor couldn’t just tell me, instead of treating me like dirt. That would have been the proper way to handle it. She didn’t say anything to me.  But I had to go back after lunch to see the proper doctor first then if he thinks I need to see the “not so nice doctor” then he would recommed it.  I went back and they got me right in and actually this doctor was cool. He did the rest of my eye exam and I do have cataracts. Low and behold I have cataracts but they are...

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Make a Muscle. Make a Difference.

Posted by on May 24, 2014 in Allergies, Exercise, MItochondrial Disease, Muscular Dystrophy, Work outs | 0 comments

Make a Muscle. Make a Difference.

So March of 2013 rolls around and kinda quiet month.  Which is very nice.  I had an appointment with my allergist and got some blood work done but everything came out normal and my face seems to be less swollen.  So she just wanted me to stay with what we were doing.  Just take the zyrtec. Which is fine by me. The 18th of March I finally had to go pick up my CPAP machine. I got a nice tutorial on how to work it and all that fun stuff.  As I was there getting fitted for this mask, I asked the guy what happens if I find a boyfriend that turns into a husband? He said what? I said I look like Darth Vader how is someone going to find me attractive with this thing on? He just looked at me and starting laughing.  I said I am still a single female that needs to be hitched and this will NOT help my game.  He started laughing again and said someone will love you for your Darth Vader mask.  I had to throw a joke in there and I had to laugh at his statement.  So that night was my first night to wear the mask and the first 2 nights I ripped it off competely and noticed at night it was off and put it back on.  I also noticed the first couple weeks I can feel the air pushing in when I stopped breathing and it woke me up.  It was really wierd because I never knew I stopped breathing and now I can fell myself catching my breath by wearing the mask. March 23, 2013 was MDA muscle walk.  Again this year I went.  I had so much fun last year, I couldn’t miss this years event.  This is the second time doing the walk, I have to support myself and many others like me and not lets forget the caregivers.  Otherwise,  not much else going on with the doctors. Which is very exciting. I haven’t said that in a very long time. I am also going to combine my work outs to this post since my month of March in 2013 is kinda boring. Which is good thing. So I continue with the same program 3×10 of each exercise.  I noticed I can start lifting a bit heavier weight but I still can not do high reps.  I have tried to do 3×12 but I can not finish my work out.  On a total I am working out about 45′ to an hour. Which is great progress but this is not high intensity either.  I did one private class of yoga for 30″. I have noticed I have right hip pain as well when I start to do higher level activities. (like trying to jog, walking a distance, and squating) I am not sure why though. I am thinking it is just muscle weakness and need to get stronger. Do you have a CPAP? If so, is it helping you?   Safe Training Always, ML  ...

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Yoga Time!

Posted by on Mar 29, 2014 in Diagnosis, Exercise, MItochondrial Disease, Muscular Dystrophy, Psychology, Work outs | 3 comments

Yoga Time!

February 3rd I did my first private yoga session for a half hour.  I haven’t done yoga in almost 3 years so I wanted to take it slow.  Not sure how my body would respond.  I completed my 1/2 hour yoga session and overall it went really really well. Although I did notice if I held certian positions for too long my body would get really stiff and it would be difficult to move into another pose.  I would definitintly have a delayed reaction when I held the poses for too long. Sometimes to move out these positions I would feel like I am stuck and it hurts and can be very painful.  This makes sense because myotonia causes muscle stiffness and a delay in reaction.  So when I used to complain and I would tell my doctors my hands would get stuck in certain positions and it would be hard to release my hands (I felt this about 2 months after getting rhabdo) and now explains why going up and down stairs my leg muscles felt weird.  I told many doctors it is very hard to expain what I am feeling. Almost like I can feel my leg muscles (quads/calves) moving while doing stairs but I wasn’t sure because I never experienced anything like this before.  Guess what? It’s not in my head it is from the myotonia causing leg stiffness as well. So getting back to yoga, I just told the yoga instructor I can not hold poses for very long it needs to be a bit more flowing.  But I also had to be careful not to go to fast because I would fatigue really quickly due to the mitochondrial disease.  So I had to find the right flow for me.  The rest of Feb I scheduled yoga once a wk for the next 2 wks. I was doing really well and I was very happy. Just getting back to something I loved to do made me more than happy.  During this time I was also weight training and getting stronger.  Even started trying to do curcuit training for 30′ to see how my body would respond.  I did notice I needed a bit more recovery time in betweeen sets to be able to complete the 30′.  This is all new to my body and I am really testing it right now so I am trying to be mindful. Even though on my strong days I want to push right through it because I feel so good but the next day I might not feel so good.  And I have had plenty of experience with that. For the most part I am trying new things and I feel like I am getting stronger which  is great but I also have to remind myself not too push to hard.  Sometimes that is the most difficult for me! Especially when I feel awesome.  But I also feel if I don’t try it then I won’t know my limit either.  So sometimes I feel like I am between a rock and hard stone.  I also noticed it is very hard to be consistent with my work out program.  I have no idea from one day to the next how I will feel. This in it’s self is frustrating. So as you can see I am trying to step...

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Are You an Onion?

Posted by on Mar 17, 2014 in Diagnosis, Gastroenterology, MItochondrial Disease, Muscular Dystrophy, Nutrition, Psychology | 2 comments

Are You an Onion?

Since I got my “real diagnosis” and this process is finally over trying to search and search what is exactly going on with me, my blogging will be a bit different from this point forward.  I will still of course write about my doctor appointments, work outs, nutrition, and all that.  But I will be heading in a different direction meaning day to day things, my challenges I face, my improvements, the ups, the downs, the good, the bad, the ugly, and in different since being diagnosised with myotonia muscular dystrophy type II (DM2) and mitochondrial disease.  Since I am a year behind in my blogging this part might be a bit catchy. I know I will want to fast foward to right now!! But I will not go too fast because there are a lot of stuff in between and a lot of cool things coming up and leading to my future. But it is almost weird now because all this drama has been lifted from me and hoping that the future will bring different drama to my life.  I know I said drama but honestly  I am sick of health drama. I want regular life drama. Maybe one day I will regret saying that. lol During this whole time of trying to find out what was wrong with me which a lot of emotional and even physchological changes came about and even flourished. At the beginning of all this I was really really embarrassed.  How did I let something like this actually happen to me? Why did I listen to others? When in fact I have a degree in this area.  Doesn’t make sense but again it does make sense if you are a driven, self-challenged, and determined person. I think one of the main reasons I got to this point is because I was in a relationship that a person told me I wasn’t pretty enough, didn’t have big enough breasts, I wasn’t movie star pretty, I had a a fat roll and you get where I am going with this. I think til this day that has so much power in my mind.  I still think about it and critique myself til no end. Everyone critiques themselves to a point but at times this can be an obsessive behavior for me. Which is not healthy and creates a lot of insecurities. I am working on this til this day. It’s amazing how one person so long ago can still weigh heavily within you. After being embarrassed I shut down.  Believe it or not during my blogging I shut down from family and friends who reached out to me. I think during this time I was going through so much and it was so hard to talk and explain things. When there was always positive testing coming back, it was just to exhausting at times to talk about it. I also started gaining weight and I did not like how I felt within my skin.  I was up to 142lbs. I know some people will be like stop complaining but my body was just significantly different as well. I also went through the angry stage.  Then denial. Now dealing with acceptance since being diganosised. And some other things here and there. So as you can see I am an onion and I have a lot layers...

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This is it! Huge Huge News! My Answers to All the Madness. Part 3 of 3

Posted by on Mar 1, 2014 in Diagnosis, MItochondrial Disease, Muscular Dystrophy, Psychology | 2 comments

This is it! Huge Huge News! My Answers to All the Madness. Part 3 of 3

So Feb 25th I arrived at the sleep study place. I had no clue what was going to happen.  I had to arrive by 7pm and had to stay the night.  The picture to the left you can see all the cords etc that will be hooked up to me while I sleep! I had to have lights out and tv off at 11pm.  I had to wait for the ladies to come back in to finish putting all this stuff on me and I couldn’t fall asleep. (meaning they would not let me) I started to fall asleep and I heard my name yelled out on the loud speaker to stay awake… we will be there shortly. Oooooo I just wanted to go to bed. I felt really weird because they watch you while you sleep in this room.  I am sorry but I am sure there is some crazy stuff they see while people are sleeping.  11 O’Clock when lights were out so was I. They woke me up in the morning and I was so out of it. I was a hot mess. My hair was all over the place and they had to take all these cords off me that were attached to glue. Glue all over me. They told me they had to come wake me up several times during the night.  I had not a clue. I only remember one time because I went to the bathroom. I left and was so tired and exhausted from the study I drove home in the wrong direction. I am doing this a lot if you haven’t noticed. I just get so tired and exhausted. Sometimes I am pretty sure I can pull off the road and take a nap.  Which is not good at all. By the 27th my doctor called and said the test came out abnormal and had to go and get another sleep study test, to see which CPAP I could use. I have obstructive sleep apnea. I tried reading the note on the sleep test and I have not a clue what it means. I just saw that I was positive for sleep apnea.  She gave me the number to call for the second sleep study test. I called that day and they got me in on Feb 29th. It was that or wait another 2wks.  I just took it because I  am sick of all this testing taking forever to come back then you have to wait etc, etc.  Again it was about the same as last one but this time they had all kinds of masks to see which one suits you the best.  They started out with (and I wanted to0) this cute little mask that goes on your nose.  I really wanted that one.  The other masks look scary! So they put it on and in the middle of the night they woke me up and had to switch to a full face mask because I do not breath through my nose while sleep.  I breath through my mouth, so the nose one would defeat the pupose trying to not hold my breath while I sleep or stop breathing. So the full mask it was. I was so upset with this! I wanted the cute one.  Is there really such a thing as a...

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