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People's Advocates for Total Health works to provide advocacy and connections to better health in communities across the United States. Our original focus was Ehlers Danlos Syndrome, but we now support doctors, coaches, advocates, and educators in supporting invisible and chronic illnesses in every way possible. Right now we are spearheading a fundraiser to provide 300 families with genetic testing for EDS. To donate or find out more, reach out or go to #MightyTogether #Dysautonomia #Dysphagia #EhlersDanlosSociety #EhlersDanlosSyndrome #chron #PolycysticOvarySyndromePCOS #InflammatoryBowelDiseaseIBD #Infertility #LymphomaNonHodgkin


Grieving what will never be.

I’m so tired. I found out a few days ago that I cannot have children, I cannot get pregnant and carry a baby to term, let alone safely.
I have Lupus nephritis- lupus in my kidneys. I have anti-phospholipid antibodies syndrome, infertility is a major symptom of this condition too.
You kind of need healthy, functional kidneys to have a baby, and have blood that functions normally or at least efficiently enough- to carry a baby. I have neither.
People have been telling me “well you can always adopt!” But that’s not the point. Besides, I was adopted when I was a baby. I’ve battled with the difficulty of being adopted- I couldn’t adopt a kid to build my family as I couldn’t help them cope with their experiences when I can barely do the same for myself.
It doesn’t replace the fact that I feel so empty, knowing that I should be able to have a pregnancy. Every other woman on the planet is able to have a baby. Almost every woman on this planet has functioning organs and blood at the very least. I feel like I have failed in every single aspect of life a human could fail in. And on another stupid note, who on earth would want to marry an infertile, chronically ill, medically fragile women?! No one. Or at least not anyone who would fit my standards of basic human decency. I’ve been too disappointed by men who’ve tried to take advantage of me for those reasons.
I’m broken on a cellular level, my organs are broken, my mental health is broken… and now the one thing I was counting on, to complete in my life as a women? I am broken there too. I’m a failure of a woman, and a human. How do you move on in life when your future is wrecked in every single way possible, and it’s set in stone? Every option is awful and I’m so so tired of all of this. #Lupus #LupusNephritis #SystemicLupus #AntiphospholipidSyndrome #Infertility #autoimune #Vasculitis #MentalHealth #Anxiety #Depression #PTSD #Grief #advisemeplease

23 reactions 8 comments

Grieving Something That Never Happened

Content Warnings for Infertility.

Grief is so weird and it's showing up around things I never expected it would. I worked in healthcare during the pandemic. I didn't touch another human being for nine months and when I came out of isolation after the vaccines, all my friends I was close to had moved away and had kids. The ones who stayed had gotten married and also had kids. I went from having a vibrant community to being suddenly left out of things because I wasn't a mom or part of a couple.

I tried reaching out, I shared how lonely I was feeling, and nobody heard me. I went to a "friends vacation" with this entire group. I was the first one who had to leave and when I asked if we could take a group photo before I left, one of them said "Oh, we already took it before you got here." Well, that was the final nail in the coffin for me. I pulled away from them and haven't spoken to some of the people in that group for over two years now. Not a one of them has reached out to ask about where I went or what's happened.

When I started having some weird health symptoms, I went to the doctor and was told that I could have cervical cancer. After testing, biopsies, ultrasounds, and bloodwork, (all of which I navigated alone), it turns out I didn't have cancer, just a hormone imbalance. But I also found out thanks to ultrasound images that it's essentially guaranteed that I'll never be able to have kids. I'm not married, I didn't plan on having kids any time soon even though I'm 34 and my biological clock is starting to tick faster. But to have had the choice taken away from me by my own body has been so hard.

Ever since I found out, it's been so painful to be around my friends who have kids. Seeing them happily married and their adorable families... Seeing that they have what I have wanted for so long and will probably never have. I just feel so alone and so sad all of the time because nobody else in my life understands.They all have their partners and their kids and I'm happy for them, but sad for me, and mad at life for being so unfair. I'm mad at myself for not being more intentional about dating even though I was so focused on my career and school. I've tried online dating but the entire process is exhausting and I get ghosted before I can even get to a first date.

And I feel so ashamed for being so sad. Because I am so lucky in so many other ways. I bought my first home at the age of 30, I'm working in a career that I worked to get into for 5 years, I have a cute dog, and the few friends I do still have are incredible. But it still hurts.

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I’ve recently come to the realization that having a baby is something that will happen for me. Everyone keeps telling me to trust Gods plan and that miracles happen but to be completely honest, that makes it harder. Yes miracles happen for some people but keeping that hope alive, living my life in the maybe one day hurts more than just accepting that it will never happen. This is where the guilt comes in. I have 3 beautiful step children that I love so much and we get semi frequently. I know I should be thankful for all of the blessings I already have, but its hard. I love them and I know they love me but I still feel an emptiness. I see all of these pregnancy announcements and I still feel jealous and sad, and I feel guilty for having those feelings. #Infertility


PCOS never goes away

I am 73, and I have PCOS. I have suffered from irregular periods since my teens which is also when I started to gain weight. By the time I was 18, I was overweight, depressed and had horrible periods. I went to a doctor who prescribed amphetamines and birth control pills. He never mentioned PCOS but I don’t think doctors knew much about it back then. It was 1968 and the drugs worked for me, although I would not recommend them since amphetamines are very addictive. But they helped me lose weight and lifted the depression. I kept the weight off for about 10 years but the depression crept in a few years before that. The birth control pills regulated my periods and hormones. I stayed on birth control pills until I was 24 when I wanted to get pregnant. When I never started my period after going off the birth control pills, my doctor gave me Clomid to start my period and I got pregnant the first time I took it. I had my daughter on Valentine’s Day 1976. I was never able to get pregnant again and the weight gain and depression started back in my late 20's. I was in my thirties when my doctor diagnosed me with PCOS. I had never heard of PCOS at this point in my life and all the doctor told me is that I will always have a hard time losing weight and getting pregnant. A few years later, around 1982 I had a cyst on my ovary burst and had to have one ovary and fallopian tube removed. It was extremely painful, I had sepsis and I was in the hospital for my daughter’s 7th birthday.

My daughter began to gain weight around age 9. She was diagnosed with PCOS when she was a teenager. She was having the same menstrual and weight problems that I had at that age. She was able to get pregnant, after 9 cycles of Clomid at age 26. My grandson was born in 2003. They wanted more children but were unable to get pregnant again. My daughter and I are both very grateful that we at least got to experience motherhood, since the disease causes infertility. We have both suffered from obesity, excessive body hair, irregular periods, anxiety and depression. We have had periods that last for months or I once went for two years without a period. We both have been on antidepressants and anxiety medicine. I now take 14 pills every day. I haven’t been able to lose weight since my late 40’s. I had a hysterectomy in my 50's so that took care of the menstural problems but not the PCOS.

I have heard a lot more about PCOS in the media the last few years and doctors seem to be much more aware of it now than when I was younger. Hopefully it won’t be too much longer before they figure out this terrible disease and maybe cure it someday.

12 reactions 2 comments

Dear classmate

To say my life is vastly different from anyone I know is the biggest understatement in the history of understatement. All those I graduated with have almost reached 30 years of life.

I feel the divide of our similarities widen now more than ever. It gets more and more devastating to me each few months especially as new health problems seem to come at least twice a month.

Every single doctor I have come across here in S.C. has never heard of my Ehlers-Danlos Syndrome. I have taught 50+ doctors and 150+ nurses about this diagnoses. And that isn’t even my biggest or worst health problem, though it will be with me forever.

Because of that I feel some relief knowing I will never be able to pass these horrible hereditary genes to any poor unsuspecting mini me. And then the hurt explodes that I will never be able to have a future mini me.

I adore each picture of a baby that all of those I grew up with post. So many little ones that look just as their parents did at their age. A smile I can’t help but have as a new addition to the population appears in the world, and memories of their likeness in my class many years ago plays through my mind.

It is so amazing and heartening to see each and every one of you grow as people as you become parents. You THRIVE.

My heart aches deep and low knowing I can never commiserate on going through pregnancy, maternity photos, new parent long nights and each new year birthday and school photos. It feels as though my heart has been ripped out knowing I will never get to introduce my parents to a grandbaby from me or make my brother and sister aunt and uncle to a child I brought into the world.
Jokes and laughter do their best to convince me it is all okay and that the divide between me and everyone else in the world is no big deal when my writing and words can create a large sturdy bridge so everyone can understand my side of things.

But those quiet moments alone with just you and your child, I won’t get those. Each day you wake up, get to shower, make breakfast, go to work, make memories out in the world, I don’t get that.

My life is 99% spent in my room in bed sleeping with excruciating pain waking me just so I can take my many medications-60 pills a day-try to choke down at least a teeny bit of food so my nausea can be lessened by a sliver, and then go right back to bed. I miss out on LIVING. I have gone way past my limit of painful existence just to try desperately every thing possible to improve my health. But doctors cost me so much more than I have ever gained in my full 28 years. Those who waste my living time by refusing to help me, refusing to do anything to decrease the pain that so haunts and tortures me millisecond by millisecond. Years go by wasted being spent with doctors I pray will help me just once but they scoff, being not one bit bothered by my discomfort and ocean of tears.

This is the healthcare the world has been building. And I, for one, have never wanted so badly to LIVE when I am being told to not exist.

I don’t get to go to work and do what passion I love most of all. I don’t get to go to a home I own in a car I love at the end of the day. I don’t get to spend time with friends or family not because I don’t want to but because my body won’t let me. The freedom of choice in my life is almost nothing. Claustrophobia in a tiny room I exist in is not an existence anyone would choose. I don’t even get to go to more school as my health is so negatively unpredictable. With home health care at last I don’t have to expend everything in me just to try to get dressed for the day and making my hair presentable.

Each of those medications is so necessary and yet each side effect possible and those doctors say aren’t, torment me even as they half help me. Beggars can’t be choosers.

I want so badly to be content as I savor scraps of joy every few months. But as time passes, so does any tiny dream I ever let slip out of my eyes and drip down my face.

All of us with bad health or no health want nothing more than to pretend everything is okay and that we have the same happiness and freedom that is suppose to be a God-given right to each child that comes into this world.

But at least to a small part of me, infertility is not the worst thing for a chronically ill chronically in pain girl with a chronically failing body.

Please, savor each moment you have to live, go to work, be with your kids and spouse, make memories or take vacations to places far away.

Because once your health starts to fade, it is near impossible to get back.

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🕯️Wave of Light 2023🕯️

Nothing can ease the pain & devastation that comes with pregnancy & infant loss. Today we remember all the precious souls too wonderful for earth & the loved ones they have left behind.

#waveoflight2023 #Miscarriage #Infertility #Prematurity #ChildLoss #Grief

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We are all just one event away from homelessness.

Good Afternoon, I am writing today because I am in the running for Ms. Veteran America 2023. I am a finalist and will compete on Oct 8th as Elvis Presley and all proceeds for Ms. Vereran America go directly to Final Salute Inc that helps Female Veterans and their children facing Homlessness.

My story directly corelate with my reason for entering Ms Veteran America 2023 and that is we are all just one event away from experiencing homelessness or worse death. When I was 15 years old while I was in high school, I found out that I had precancer cells growing on my cervix and I had a leap procedure at 15. I had a friend of mine die not to long after high school from ovarian cancer. At 17 I had my jaw fractured by and ex boyfriend and had the case taken to court. It required a lot of strength but led me to join the military while I was in high school, I joined the Army my senior year of High school. I served in both the Army and Navy, special operations and conventional military. I suffered infertility as a service member and military wife for 7 years, spent thousand of dollar in fertility treatment and testing and was a victim of a fertility clinic that was shut down to mal practise because of experimental testing. Recently I experienced a misscarriage at almost 3 months pregnant and before that lost an embryo during IVF. At 7 years I was able to have my mircle IVF baby and at 6 months of age my baby and I moved back to Kentucky to take care of my Aunt that was like my mom that raised me. She found out she had cervical cancer that thanksgiving and I took care of her and my disbabled 36 year old cousin and son until she passed April 25th of 2021. Just a few months later at 18 months my son stoped trying to eat baby food and stoped trying to talk and we took him in for therapy and they said he could be autistic. My son now goes to OT, PT, Play Thearpy and Music therapy and speech almost everyday of the week. And because of my military injuries including a spine ingery and sjogren’s syndrome a sickness that was discovered during a military surgery I spend most of my days going to apts and advocating for health and mental health. I am currently going through IVF again and when I delivered my son we both almost lost our lives and post partum counseling has been of most importance. My reason for including this is because just one of these events or expenses could have led me to homelessness and I want to help the female Vets and their children experiencing homelessness. There are many different reasons and avenues that a person can find themself homeless but very few resources for our female vets and their children and I want them to know they are not alone and help them to get the help they need. I wanted to reach out and see if I could do an interview or article discussing the causes that I am fighting for as a finalist in Ms. Veteran America 2023, such as spreading awareness of the 988 and NC 211 numbers and mental health, Final Salute and resources for female veterans and their children facing homelessness and help for spouses, service members and children facing abuse and how they can find help and how we can help them by providing that safe place and introducing them to help and events like Fayetteville’s “Remember My Name” event. Also how we can give back to our shelter and helping organizations. Ms. Veteran America 2023 will be Oct 8th , 2023.

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My husband wants to help me so bad. He keeps trying to come up with ideas on how to magically fix everything. I can’t have children and I can’t afford IVF. It’s never going to happen for me unless some miracle happens… everyone’s favorite line to tell me anytime I mention infertility but I digress… he wants to fix it so bad he keeps trying to come up with ideas. He asked me the other day if he could just find someone who doesn’t want kids and get them pregnant (by IUI, not sex) and then they sign the baby over to me…. No woman is going to want to get pregnant and carry a baby for 9 months and then give it up intentionally unless they are getting paid for it in cases of surragacy. That’s not a solution. If we had the money for surrogacy we could just do the IVF. Surrogacy costs more than IVF. It’s all the same process except instead of going back inside of my body, it would go inside of theirs. If I could do that I would just want to carry the baby myself. My uterus is fine. My tubes are the problems so if we could do it I would but financially we can’t and it was a “time is of the essence” situation so we really don’t have time to do it later when we have the money. I have accepted adoption as being my only option. That’s okay with me. It’s taken me a lot of time to get to this point but we are certified foster parents now. We have been for a couple months now but haven’t gotten our first placement yet. I just don’t think he has accepted that yet. I think he yearns for children of his own and knowing he won’t ever have that with me bothers me so I know it has to bother him. I just don’t know what to do. I feel like I’m doing the only thing that’s going to be able to make me happy but I’m hurting him at the same time. I want him to have what he wants in life too. And I have a million irrational fears about him leaving me or cheating to get some random girl pregnant just to be able to have a child that’s biologically his. I think I’m just crazy on that part but it’s still a fear in my mind. I know he loves me more than anything and he gives me the world 🌎. He is my best friend and my partner in life. Even though he is my everything, I still have breakdowns every now and again especially around my period just because I’m overly emotional at that time and that’s a reminder every month that I’m not ever be able to get pregnant. It’s hard enough dealing with a period but it’s worse with infertility. I think it breaks him somehow every time he sees me crying my eyes out over it. He feels like he has to be the superhero who swoops in and saves the day but he can’t in this situation. Can anyone else relate? I’ve reached the point where I’m feeling kind of alone in this. I know I’m not alone but I’ve just been kind of down lately. My state has a bad need for foster parents because you see signs everywhere asking for them but yet it’s been 5 going on 6 months since we were certified and we haven’t gotten a placement yet. #Infertility #Marriage #FosterCare #Adoption #lonely #relate #MentalHealth