# I finally did it...and some bad news.



## SlideStop (Dec 28, 2011)

Cute!! I used to have hair much shorter then that and it's so much easier to maintain. Enjoy it!
_Posted via Mobile Device_


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## tinyliny (Oct 31, 2009)

I KNEW IT! you look perfect!

sorry to hear about the chemo. my friend and riding buddy is in chemo. it was easier to deal with than she thought it would be. chin up!


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## Endiku (Dec 6, 2010)

You did! I love that I have to do NOTHING with it. And it dries in 15 minutes. Perfect since I have zero free time anymore!


ETA: for those who don't know, just to catch you up, I have RA, Lupus, Sjogrens Syndrome, Celiacs (4 AI diseases), and I'm basically becoming allergic to one new thing every 2-3 weeks. I also was just diagnosed with stage 3 endometriosis, beginning stage osteoporosis, and today they realized that I only have ONE ovary. Wow. My kidneys are being jeopardized as well as my lungs though, and that's why such desperate measures are about to be taken.


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## JohnWayne (Mar 26, 2013)

Love the hair cut! Hate the health update! I hope you will be well soon.
_Posted via Mobile Device_


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## Cielo Notturno (Sep 12, 2013)

Your new haircut is beautiful 

I hope that your health will improve, and yes there is the slight chance that you'll keep your hair. If they fall, they'll grow back, don't worry :hug:


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## faiza425 (Dec 21, 2012)

:clap: Your hair looks amazing. Not everyone can pull it off that short, but it's perfect on you.

Praying for you during these rough times, my friend. :hug:


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## NorthernMama (Mar 12, 2008)

The hair looks great! No more hiding! Love it.

The chemo sucks except that at least something is happening. All that time months? years? that you spent trying to drill it into people's heads and finally they realize how debilitating it is for you. Enough to take more measures - something has to work. Would bone marrow help? I mean you basically have no immune system other than one that attacks you. It's like your immune system should be in another body.

Congrats on the hair again. What did your parent say about it?


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## MsLady (Apr 18, 2013)

Endiku said:


> You did! I love that I have to do NOTHING with it. And it dries in 15 minutes. Perfect since I have zero free time anymore!
> 
> 
> ETA: for those who don't know, just to catch you up, I have RA, Lupus, Sjogrens Syndrome, Celiacs (4 AI diseases), and I'm basically becoming allergic to one new thing every 2-3 weeks. I also was just diagnosed with stage 3 endometriosis, beginning stage osteoporosis, and today they realized that I only have ONE ovary. Wow. My kidneys are being jeopardized as well as my lungs though, and that's why such desperate measures are about to be taken.


I'm sorry to hear this. I've been Dx with Lupus for about 9 years and have been on about every medication available. If you ever want to talk just PM me. It has attacked my bladder and lungs.
_Posted via Mobile Device_


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## horseNpony (Sep 27, 2013)

Your haircut looks great!  And I just feel that I need to comment on your eyes, they are so blue, Ive always wanted such blue eyes, but mine are basically grey. 

Sorry to hear about the chemo, but it will be beneficial in the long term. Hoping all works out


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## cakemom (Jul 4, 2010)

Oh hon- I love it, hate the reason but adore the haircut. 
I'm so proud of how strong you are- you make me stronger just knowing you- if that makes sense.
_Posted via Mobile Device_


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## EponaLynn (Jul 16, 2013)

Never saw you before but LOVE that haircut on you...chemo is getting easier (or more targeted) on the body these days so maybe you'll keep your hair, my friend kept hers through 6 months of chemo.


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## Endiku (Dec 6, 2010)

GAH I had a big reply and it was eaten!!! 

The shortened version, thanks for all of the compliments! I loooove how easy it is to maintain and I feel kind of bold with short hair. Watch out for the tiny pixi girl!!!

Thanks HorseNpony! I am the only one in my family with bright blue eyes and I consider myself quite lucky. I love them  unfortunately my Sjogrens will eventually force me to start wearing glasses ( I wear clear contacts right now ) because my eyes are very dry and contacts tend to cause abrasions for Sjogies, but I'm hoping to prolong my contact wearing for a white. I hate my glasses. 

Northernmama- they weren't happy, and were kind of horrified when I first walked in, but they're getting used to it. I think they realize that I have a legitimate reason to cut my hair short now, and they also realize that I'm a big girl and can have short hair if that is what I want. And it is.  I think they were secretly worried that short hair meant I was considering changing my orientation or something, but that isn't the case. I just wanted to try short hair! haha. They read too far into it, I think.

And you're right. Chemo is scary, but after FOUR YEARS of no one believing me, no one wanting to help me....I'm glad that I am finally being helped. I guess there just wasn't enough physical evidence that could tested and printed for them to diagnose me for a while. But now it is blatantly obvious. I have cysts (benign thankfully, but there are a lot of them) and lesions in my kidneys, ovaries, lungs, etc that they think are pretty much from my system attacking itself, as well as ANA readings that are wacky, low white blood cell counts, etc etc etc. So all of the things that I knew were wrong now are SHOWING themselves, so I can get help. I hope that this chemo works, and gives me a semblance of my life back. I constantly feel sick and I go through 7-10 day flares of my AI disorders which basically make my useless. It's awful. I'd love for them to go into remission. They've even go so far as to, as my GYNO told me today 'for all intents and purposes, ingested one of [my] ovaries'!!!! O_O Not even kidding. I have stage 3 endometriosis, recently diagnosed, but they did a special ultrasound today because I've been having even more pain, and couldn't find my left ovary. So then they did another procedure, and found...part...of my ovary. The rest of it is nowhere. And I used to have it. Absolutely bizarre. My body is LITERALLY eating itself! O_O

Bone marrow transplant isn't an option for me at the moment because the risks outweigh to possible good things for me. That could change, but right now, with a low dose of chemo, my mortality chances are low. With a transplant they would become very high, and there is no guarantee it would work. I'd also have to find a matching donor, which is very difficult, and I'm not high priority for that kind of things. I'd have to stay in a hospital for many weeks. So right now, we aren't really considering it. 

All in all, I'm afraid of chemo yes, but I'm afraid of not having chemo too. I just hope I can continue my normal life. I'm doing well with a 4.0 in college so far with 4 AI disorders. Surely a little chemo can't ruin me? ha. We'll see! I may have to cut back on working though....I love my job but it is SO draining. I work with disabled children.

MsLady- I'm so sorry to hear that  Lupus is terrible. I didn't even know I had it until about 2 months ago, when I had a test looking for something else. Apparently SS and Lupus are closely related. Ugh. Stupid autoimmune systems, why can't they behave themselves?!?!

As stupid as this is though...it is my Sjogrens diagnosis that bothers me most of all. It physically alters a lot of people....because it has to do with the moisture within your body. Basically your AI system attacks all of the ducts and glands in your body, including the tear ducts (causing eye problems), salivary ducts (causing mouth problems), skin pores, etc...and in rare cases (like me), your kidneys, liver, and lungs by taking the moisture away from them. The worst part though, is that 90% of sjogrens patients lose their teeth by age 50, and I'm on a fast track to that.Despite eating VERY healthy and taking very good care of my teeth (the dentist says so), my teeth are basically rotting away. I've had thousands of dollars of work done....but I will still end up toothless. The physical impact, and psychological impact of that is what bothers me most of everything. I don't know why.

And then I also have dermatillomania, which is basically a form of OCD that causes me to self mutilate (not cut, it is different.). So I have scars all over my body from that. I try to control it but stress causes my AI problems to get worse which stresses me more which causes my derma to spike which stresses me more and makes more AI problems....and the cycle goes on!

Thanks everyone for being so supportive and wonderful. <3 


Oh, and Epona- here is what my hair was like before this cut.


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## RegularJoe (Aug 26, 2014)

Endiku said:


> ANYWAYS, here is my new hair  thoughts? _*I feel kind of awesome with short hair.*_


You look kind of awesome with short hair!


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## Yogiwick (Sep 30, 2013)

tinyliny said:


> I KNEW IT! you look perfect!
> 
> sorry to hear about the chemo. my friend and riding buddy is in chemo. it was easier to deal with than she thought it would be. chin up!


My father went through radiation and chemo and a whole bunch of other stuff to go with those (needed a port for the frequent injections, etc ended in major surgery but cancer free!). The radiation took him down more than anything physically but the chemo itself had very few side effects (none that he mentioned). He even kept all his hair, which looks something like this:







except less! Lots of jokes about that XD

Try not to stress too much, IME (none personal) it isn't that bad and the radiation a cancer patient would deal with is much worse.


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## hoiski (Aug 15, 2013)

Your hair is adorable. Sorry about all the health issues.  Hope the treatment helps and that side effects are minimal.


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## RegularJoe (Aug 26, 2014)

Endiku said:


> The shortened version...


I have to say I felt kind of weird clicking the little Like button on that post because it kind of makes it seem as if I "like" that long list of really serious health problems you're dealing with. 

I hate that you have to deal with that, because nobody should, but your story is an inspiration, and so are you, so I like it.


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## calicokatt (Mar 5, 2012)

If you ever DO need a marrow transplant, be sure to ask all your friends, including here. My best friend's mother needed a kidney and lo and behold, I was a near perfect match (She was considered hard to match, but we were near perfect, the dr's couldn't believe we weren't related). She is alive and well and doing things she couldn't even have imagined two years ago, before we started the process. There truly are good people out there, and good people around you, though it may not seem like it at times. I'm so sorry for your health issues, but the hair looks GREAT on you! I personally love a pixie (shorter than yours) but think it makes me look biatchy and unapproachable, though my bestie just says it makes me look 'sassy'.


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## Chevaux (Jun 27, 2012)

The new style looks great on you Endiku but then you have lovely bone structure (and I confess to being quite envious of same) so can wear pretty much wear any style and make it look good.

Best of luck with your treatments.


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## FlyGap (Sep 25, 2011)

You look gorgeous! 

I'm rooting for you! So relieved that you are now being diagnosed and properly cared for, your illnesses have always been in my thoughts, you in my prayers!

Get lots and lots of R&R girl, when you are healthy you'll be better able to conquer the world!
(And I know you will!)
_Posted via Mobile Device_


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## Emma2003 (Jan 9, 2014)

You're one of those fortunate people who look good with both short and longer hair styles. Personally, I like the short version best. Kudos to you for persisting with your doctors and getting a diagnosis. I'm sorry you have to go through chemo. I have my fingers crossed for a good outcome.


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## Golden Horse (Feb 20, 2010)

I'll join in the crowd shouting LOVE the haircut, but hate the health news. Hoping that everything goes well.


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## stevenson (Sep 12, 2011)

Your hair is super cute ! It looks very nice on you. Sorry to hear about your dx, and not all people lose their hair. Sorry to here about the teeth, but they do implants now , and if you cannot use the implants and have dentures, then at least you won't have teeth aches .
Will they be removing your uterus , you immune system could be sent into overdrive because of the endometrius. producing to many mast and T cells, and then the white cells decide to join the crowd. Immune disorders suck , hope this resolves some of your issues and that you regain some health.


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## JCnGrace (Apr 28, 2013)

Love your new do! I don't know what it is about mothers but mine always wanted me to have long hair when I was a kid. I didn't want long hair and if she wouldn't take me to get it cut I'd cut it myself. I was a brat like that.LOL

Now I have long hair and she says I'm too old for it. I gave up on trying to please her years ago so anything she says goes in one ear and out the other.

Good luck with your health issues. It sounds like your in good spirits for the most part and that is important. My niece was diagnosed with RA a couple of years ago and it took them a while of experimenting with different rx's to finally find the one that worked. Don't be so brave that you won't tell them if something isn't helping.


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## mrsgrubby (Jul 6, 2014)

Your hair is really cute! 
Also, wanted to mention your beautiful eyes!

Sending you hugs and strength as you travel through this difficult journey with your health!


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## karliejaye (Nov 19, 2011)

That cut just makes your eyes POP! Beautiful!

So sorry to hear your health tribulations. I can sort of relate: hyper POTS (thought to be autoimune, too) and endometriosis for me.
Doesn't it feel nice to finally be taken seriously?! These dang AI disorders are so hard, yet they aren't visible to the outside world. It can get downright tiring hearing that, "You look healthy!"

As per the chemo, my dad has had it twice and both times his hair actually got thicker, which was strange, but I guess not unheard of. Sending good thoughts your way!


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## zookeeper1991 (Sep 11, 2012)

Love the haircut! Good luck with the chemo. My dad's hair came back curly, but he had more heavy duty chemo (lung cancer), hopefully you won't lose your hair.

Glad they are at least figuring out what's wrong, though!


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## Endiku (Dec 6, 2010)

Thanks everyone <3 (by the way isn't it ironic that my mom has short hair too, but was really against me having short hair too? hehehe. She always said it would look bad with my face and make it look fat. I actually think it makes it look thinner!)

Yes I am SOOOO thankful that I'm not having any form of radiation done. So many people go through so much worse than I will be. I can't imagine it. 

I really don't feel inspirational, I feel like I complain a lot. Not so much now that I KNOW there is something wrong with me, but I felt so needy for a while when I couldn't even say what was wrong! But thank you  I'm learning to look at the bright side of things because I'm quickly learning that if you don't, little things can get you down very, very fast.


karlie- I really feel for you! I have a friend who has POTS. Terrible disease! Hers isn't managed well at all and it really inhibits her life. I can't imagine what it must be like! I completely understand where you're coming from though...invisible illness is terrible. As weird as it sounds I prayed for results to show positive for different things as I was tested over the years....because I just wanted to be able to name what I had and know how/when/if it could be treated. And I wanted to be able to definitely be able to say "yes, I have ____ and that is why ___." Now I DO know what is wrong with me, and I'm being treating. I get IV nutrition twice a week at the moment because I really can't eat much at all (severe allergies which have a lot to do with my immune system) and what I do eat is malabsorbed, which explains many of my symptoms, including my anemia. Getting that has been great because I actually have a little bit of energy. And now hopefully I can stop the progression of my AI disorders, and get to feeling good again ^_^

You're all the best  :hug:

As of right now I have a small exploratory procedure to figure out what is going on with the missing ovary, then I'll be starting chemo just in time for Halloween xD Oct 20th.


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## Yogiwick (Sep 30, 2013)

Keep us posted! Good luck and try not to stress too much!

If I didn't already say it I like the hair too


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## Change (Jul 19, 2014)

My son's disease - FSGS - is autoimmune, and my son and daughter-in-law are still trying to get my 2 year old grandson's condition diagnosed, so I definitely get where you are coming from on both the invisible disease issue and the unknown disease issue. 

With both my son and hopefully with my grandson, having a name let us learn how to fight back. 

Now that you know, you can don your armor, hoist your lance and attack every one of those doggone dragons. And with the pixie hair and the fairy-bright eyes and a pocket full of pixie dust, you should do just fine!


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## dkb811 (Oct 15, 2013)

Love your hair and oh those eyes of yours! Thoughts and prayers for you!


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## Endiku (Dec 6, 2010)

Oh I almost forgot!

Stevenson, a hysterectomy is probably in my future, but right now I would do almost anything to avoid it. I know my chances are slim with stage 3 endo and one ovary that could be 'ingested' st any time, but I hold a slim hope that maybe someday I will be jhealthy enough to have a kid or two. That sounds ridiculous I know...and I probably would be selfish to have a baby, knowing I could pass my health on to it, or may never nbr s healthy active momma...but a hysterectomy kind of solidifies my inability to have kids and that bothers me for some reason because despite me telling everyone I don't want kids and don't want to get married, on the inside I do. It wouldn't be fair to marry a man and have him basically be my caretaker, or fair to pass this to new individuals...but I don't know. I guess I just want to be as normal as I can, and at least pretend that someday I could have my own children to care for.

In reality I will probably end up adopting.... And the kid will be even sicker than me or something and we can be sick together!!! Haha.


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## Drifting (Oct 26, 2011)

I *love *your new hair cut, it does make your eyes pop out even more. You'll have to post pictures of your pixie costume if you do dress up like one.

Sorry to hear about your health news, that's never easy to deal with. Wishing you the best! You're so strong, you'll do great!


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## Golden Horse (Feb 20, 2010)

Endiku said:


> *It wouldn't be fair to marry a man and have him basically be my caretaker, *or fair to pass this to new individuals...but I don't know. I guess I just want to be as normal as I can, and at least pretend that someday I could have my own children to care for.
> 
> In reality I will probably end up adopting.... And the kid will be even sicker than me or something and we can be sick together!!! Haha.


Any man that you meet will know all about your condition before you ever get married, that is maybe a lot fairer than if something happens during the marriage. Remember too, he would not be marrying your condition, he would be marrying you! DO not rule anything out, the right guy for you is out there, it is just a matter of chance if you meet him. 

As to passing on your condition, I have nothing to say, I don't know enough about any of it to even start talking about odds.


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## frlsgirl (Aug 6, 2013)

Endiku said:


> You did! I love that I have to do NOTHING with it. And it dries in 15 minutes. Perfect since I have zero free time anymore!
> 
> 
> ETA: for those who don't know, just to catch you up, I have RA, Lupus, Sjogrens Syndrome, Celiacs (4 AI diseases), and I'm basically becoming allergic to one new thing every 2-3 weeks. I also was just diagnosed with stage 3 endometriosis, beginning stage osteoporosis, and today they realized that I only have ONE ovary. Wow. My kidneys are being jeopardized as well as my lungs though, and that's why such desperate measures are about to be taken.


Just wanted to say that you are my personal hero. You have so much to deal with and you take it all in stride with such a positive outlook. I was just sitting here feeling sorry for myself because of my allergies and self-enduced blood sugar problems. I now must go and kick myself in the bootie for being such a whiny baby!

PS: LOVE the hair!


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## RegularJoe (Aug 26, 2014)

Endiku said:


> It wouldn't be fair to marry a man and have him basically be my caretaker...


Also not fair to make this choice for this hypothetical man, I think. People who love you learn to deal with these things. 

For better, for worse, and all that.


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## bitinsane (Jun 5, 2013)

My coworker takes a light form of chemo for her RA and she has all of her long thick hair!! Sorry you are struggling with health problems =( I wish you the best and I love your new cut!


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## karliejaye (Nov 19, 2011)

I feel where you're coming from about feeling like you'd just be someone to take care of for a man. I feel really guilty sometimes in my marriage, especially when I am having a rough week. But the thing is, your illness is not you! If (actually when) you find that special someone, I bet you they won't feel like they HAVE to take care of you, like it's a burden. It is part of it, yes, but there is more to a person than their difficulties.
Do you feel bad when you take care of your animals, or do you do it gladly because you love and value them? My husband uses that on me quite a bit when I get feeling down and guilty. That and he says it makes him feel important to be able to help me, becasue otherwise I am too darned independent. Don't think too hard about it, the right guy will not resent you for what you cannot control.


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## Endiku (Dec 6, 2010)

I never really thought of it that way, I guess. It would be a crazy guy to want to take me on, but hey, i wouldn't reject him! Haha.

I have a hard time considering what my different problems actually mean for me later in life. RA is crippling, and so are two of the others. They mean I will have to be dependant on someone or something.., and right now? I am ridiculously and admittedly, probably annoyingly independent. I don't want to depend on anyone for anything. But that doesn't seem to be the path I am being taken down! Sometimes I actually wonder if I have these different sicknesses to TEACH me not to be so stubborn and independent. If so I am not learning all too gracefully! Hahaha


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## Missy May (Feb 18, 2012)

I like your new cut, and I liked the "before" picture, too. All beautiful. 

Since attitude is everything, you have everything! And, a new haircut, to boot!


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## RegularJoe (Aug 26, 2014)

Endiku said:


> Sometimes I actually wonder if I have these different sicknesses to TEACH me not to be so stubborn and independent. If so I am not learning all too gracefully! Hahaha


I'd say you're learning it as gracefully as can be expected. That's a lesson that a lot of people spend a lifetime not learning.


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## VickiRose (Jul 13, 2013)

Love the new hair do! And like many others, not so happy with your health issues. But you seem to have a plan, and that's good. 

Autoimmune conditions truely suck! I'm lucky that I only have Hashimotos, an autoimmune hypothyroid condition. My mum and sister have the same. My daughter has vitiligo, which is also autoimmune, but also pretty mild. We have nothing anywhere near as severe as your conditions, you truely drew the short straw!

Autoimmune do seem to run in families, but most research suggests that the genetics only give you the potential for the condition, and an environmental factor or virus or something triggers it. So don't disregard the idea of children just yet. I also think that any guy should be lucky to have such a lovely compassionate soul by their side, and the right one will come when the time is right.


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## 4horses (Nov 26, 2012)

What about IVIG treatments?

My heart goes out to you. I have been disabled for 4 years now. As a teenager I had severe fatigue and was always sick with colds... I had no idea that was a sign of things to come. During college I had severe exhaustion and would get all these colds that lasted for 4 weeks or more. I would end up on antibiotics at least 2x yearly. 

I saw a sleep specialist who dismissed my symptoms, an allergy specialist who told me "I did not have allergies"... The doctors had no idea why I had chronic fatigue and abdominal pain. I was told it was probably related to my menstrual period. 

I went to the GYN who then told me my cycle was so irregular (at 66-70 days), that I was probably not ovulating and I should start saving up for fertility treatments if I wanted children! Later I was told I possibly have endometriosis, but an ultrasound showed everything looked healthy, so I have no idea if that was true or not. They are treating me with medications for it anyway. 

After college, I caught an enterovirus and it paralyzed my GI tract. It took 4 years for me to find a medication that allows me to eat again. They still have no idea why my GI tract was paralyzed. They tested me for everything under the sun. I came back negative for all these different autoimmune diseases, but it probably still is an autoimmune issue, they just don't know what. The new experimental treatment is IVIG, but according to my doctor it has not been very successful and is hugely expensive. 

Despite being on a medication that allows me to eat and has fixed my malnurishment issues, and despite having bloodwork that is completely normal, I continue to struggle. The doctors tell me I "look so healthy!". Yet if I go riding for 2 hours, I will be in bed for 2 days afterwards. Severe post-exercise fatigue. I'm always cold, even if it is 80 degrees in the house. 

I get migraines as well, and have muscle weakness issues (where my legs want to collapse when I walk, very sporadic). I was seeing a neurologist but she could not find any reason for the muscle weakness. 

It is extremely frustrating, as I am not sick enough to go on disability yet I am still disabled. Even if I went on disability, since I have never had any income, I would not make much... $8000 a year was the estimate. :-(

Right now I am writing a book that I hope to publish next year...I'm just praying for a miracle, as if it wasn't for my family covering everything I don't know what I would do.


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