Food for Thought…

So today I was watching the show Parenthood. I love that show. For those that haven’t watched it yet but plan to spoiler alert! I was watching the episode where Christina tells the family about her breast cancer and upcoming surgery. And they were all sad, crying, hugging her, loving her and supporting her. They were compassionate and they were just there for her! No questions asked. The doctor she saw was amazing and set a plan in place quickly and they acted immediately. And it just got me thinking why don’t we get the same treatment?

Have you ever noticed that when someone tells another person, family, friend, doctors or complete strangers that they have an illness, like cancer for example, that they are immediately met with love and compassion and understanding and “I’m so sorry”? But when we tell people that we have MCAS or POTS or even EDS that we are met with resistance and questions or “it’s just anxiety or depression or all in your head”. Or we are told we are doing it to ourselves or just looking for attention. We aren’t met with open arms, tears or “I’m so sorry”. No one shows up to help, we don’t get phone calls asking how we are doing, no one wanting to fight this with us! Of course there are exceptions to every rule. Some may be lucky to have that reaction but most do not. And maybe there are some cancer patients that aren’t met with great understanding and love. But many times we hear “at least it isn’t cancer”. Which actually in severe cases some do have a rare form of Mastocytosis cancer. Also there are some rare tumors like pheochromocytoma tumors that are rare, hard to diagnose and hard to find. This is not to take away from cancer patients. It is horrible and heart breaking and terrifying and they deserve all the best drs, and best friends, and best family members and the best support group/communities that they can get. I’ve lost family members to cancer and I’ve watched people close to me suffer from cancer and it is an awful, horrible thing to witness and I can’t imagine what it would be like to go through it.

But my questions is why don’t we deserve that? Those of us with invisible illnesses? Those of us that have a rare disease that is not well understood? Why do we have to be presumed to lie? Why do people think it’s just in our head? Why don’t we get the same understanding, love and compassion?

A little education on POTS. The quality of life and functionality compares to those with COPD or congestive heart failure. Our autonomic nervous system does not function properly and the ANS controls all body functions you don’t have to think about like heart rate, blood pressure, breathing, GI tract, and blood flow. Our heart rate goes up at least 30 bpm just from standing. Some, if not most, peoples heart rate shoots up higher than that just from standing or sitting up. We are almost always some form of light headed. We get dizzy extremely easy and most of us pass out. Our blood cannot make it back to our brains like normal people do. It will pool in our feet and legs instead of returning to our brains and this causes us to not get enough blood to vital organs. When we eat our blood rushes to our stomach for digestion and pulls away from other parts of our body that really need it. Some people are literally bed ridden from this illness. It is a form of dysautinomia and most people have more than one form. Dysautinomia is an umbrella term for the different types of autonomic dysfunction.

MCAS is a spectrum. The most severe being Mastocytosis. I fall in the MCAS category we think. Testing is not really there yet for this disease. There are tests that can be administered to point towards MCAS and there are some that are considered to meet criteria for MCAS. But there is no one test that you do that says yes you have this disease. That along with how sensitive the testing itself is and the specific instructions that need to be followed for these tests make it near impossible to get the diagnosis. They have to be kept at certain temperatures and handled a certain way and most labs and transport persons do not know how to properly store or handle these tests ultimately ruining them. A normal tryptase is not indicative of not having MCAS. It was believed to be so and by some still believed to be so but with further research it is not a reliable test. If you have elevated tryptase then that is indicative there is a MCAS or Mastocytosis issue but having a normal tryptase does not rule either condition out. Have fun talking to drs about that. Many of us experience anaphylaxis. Btw what most don’t know is there is a difference between anaphylaxis and anaphylactic shock. Most medical personnel, as well as people, don’t know there is a difference and therefore do not recognize it. We also experience things like angioedema and hives. We experience throat swelling even without complete throat closing to things like foods, drinks, chemicals, smells etc. We react in so many different ways to so many different things. Things we can react to include but are not limited to:

Sunlight

Heat

Chemicals

Cleaning products

Clothing

Soaps

Shampoo/conditioner

Lotion

Perfume

NAIL POLISH

Cold

Medications

Foods

Friction

Sounds

Vibrations

Etc

Sounds crazy right? I know you guys have heard of people that are allergic to everything or allergic to life. Those people are us. Now imagine having reactions to all or even a few of those things and trying to go outside, or go to work or even go to a doctors office where you will be exposed to one of your triggers and will react. But you are expected to live a normal life and it’s all in your head. Imagine having 0 foods and fighting for your life in a hospital with doctors who don’t understand your illness and since they don’t understand they diagnose you with an eating disorder, anxiety and depression. Then they send you to a psych evaluation and they decide you are crazy because they don’t understand. And while you are terrified and panicking because you have now lost all control over what happens to you and you are too weak to fight and they say you are being unruly and shoot you up with a sedative to “calm” you down only this makes you react and they refuse you treatment because you have a panic disorder and it’s all in your head. That can have deadly results. Scary right?? It happens to us often. And even if you are one of the lucky ones that that does not happen to the doctors are refusing things like fluids, FLUIDS! And they are refusing picc lines, tpn, feeding tubes and other literal life saving treatments because they do not believe you. They send you home while you are reacting and you can’t eat or drink and they tell you to follow up with a psychiatrist because you are mentally ill. Can you imagine living that life everyday? Can you imagine being dismissed by drs and being told they don’t know what’s wrong or how to help. Or being degraded by doctors for being a woman and hormonal? Happens a lot to us. Really think about that. I didn’t even cover all of it. I bet you’re thinking “wow there’s more?” I could go on and on.

Ehlers-Danlos Syndrome is a connective tissue disorder. It effects the connective tissues and joints. Most of us suffer sublaxations or dislocations from this disorder. My wrist dislocates on the regular and so does my hip. In pregnancy this can cause complications like premature birth, fast delivery or prolapses. Not to mention all of the pain in the pubic bone area and the hips. Excruciating. But pain is not limited to pregnancy. We experience pain on the regular from this illness. Sometimes it can be so hard to walk that I have to use a wheelchair. I am 29 years old. Imagine the looks I get especially since people can’t see my illness. It’s invisible. We can experience prolapsed arteries, prolapsed bowels, prolapsed uterus etc. We can also hemorrhage which I did with my first pregnancy. Everything becomes stretchy with us. The complications of this illness can be severe and dangerous. It can cause some of us to be brittle and bedridden. And for some of us we have to use aides to move and do normal people things like braces, wheelchairs or walkers. We have to be careful with how we move and be very conscious of any stress we put on our joints/body, the way we bend, turn etc. It’s not easy.

As if just living with one of these illnesses wouldn’t be bad enough there are many of us that have what is known as the trifecta. Which is MCAS, POTS and EDS. Many of us have the trifecta but not all. I am one of those lucky people.

So you see our lives are severely impacted. Many of us are disabled. Many of us have to use special accommodations just to struggle through our everyday life. And we do it with a very limited to no support system. Most of us have to hunt for doctors that truly understand (not every dr that says they understand actually does). We struggle to take care of ourselves most day and many of us have little ones and/or husbands/wives we also have to care for. It takes a lot of rest, self preservation and planning to pull this off. So we miss out on so much. We aren’t physically able to do most things so we lose the social aspect of our lives. Some of us our families can’t handle it or don’t believe us so they leave. We spend everyday fighting our own bodies and usually the people (to include drs) around us. It’s exhausting to say the least and most of us also battle fatigue. Fatigue is not the same as exhaustion. Fatigue is something that no matter how much sleep or rest you get you never recover.

We are not given sympathy, empathy or compassion. No one greets us with open arms, hugs and tears when we tell them about our illnesses. We don’t get understanding or love. We get questioned and accused. And isolated. And it needs to stop. We need awareness! We need compassion. We need no judgement! Just because it’s invisible does not mean it’s not real! Just because you haven’t heard of it does not mean we are not suffering. It means we need you the most! It means we need awareness out there so we can stop being harrassed for using handicap placards, wheelchairs, walkers or motorized carts at grocery stores. Or when we use the handicapped stalls in the bathroom. Yes people abuse the system but that DOES NOT mean everyone does. And quite frankly that’s not for you to decide. There is no way for you to know just by looking at someone in public. And just because you form your own opinion doesn’t make it right.

So here is to awareness! Here is to compassion. Here is to understanding. Here is to empathy. Here is to humanity for all. We with invisible and rare conditions deserve just as much as others with well known and noticable illnesses.

Love to all!

#MCASAwareness #POTSAwareness #EDSAwareness #ChronicIllnessAwareness #InvisibleIllnessAwareness

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Before I Was Sick

I had a doctor tell me once that I had to stop saying and thinking the phrase “before I was sick”. I’ve also had a few people in my life (who aren’t life changing, scary sick) tell me the same thing. I have, and still do, on multiple occasions used the phrase “that was before I was sick”. I’ve used it to explain things like what I could eat, what I could do and medications I could take. My doctor got frustrated because they wanted me to take medications that I didn’t feel were necessary or important to my treatment and they were risky. And i didn’t feel the benefit outweighed the risk. If you don’t know me I am very vocal and I’m not a good patient. I never have been. But if you lived a life like mine with all kinds of rare illnesses (chronic and not chronic) you wouldn’t be a great patient either. I don’t do it on purpose. But I get so tired of doctors not listening to me about what’s wrong with MY BODY.

I got so angry when the doctor said that to me. I was laying in the hospital bed with a temporary feeding tube shoved down my throat and we were debating vitamins. I was newly pregnant and lost the 4 safe foods that I had left. They were worried about vitamins that we had already made an alternate, more safe, way for me to receive them. But they were refusing to talk about medications that could stabilize me or rescue me in a serious reaction. They refused to talk about or try pregnancy safe medications for me to take to get better and calm my mast cells to make it safer for me and my baby to live but they wanted to shove vitamins down my throat. I said no. They were asking about vitamins and nausea meds I tolerated in the past. And I named what I tolerated “before I was sick”. And she got angry and told me I needed to stop saying that and thinking that and that I just needed to say I tolerate those meds.

But that wouldn’t have been accurate. And I refuse to do that. Because my illnesses were life changing. Over night, literally, my whole life changed and I no longer tolerated ANYTHING I once did. It would be, in my not so humble opinion, dangerous to look at things like that. If I lived by that rule of thumb I might not be here writing this blog for you. I all of a sudden couldn’t eat foods or drink WATER! All of a sudden medications I had taken my WHOLE LIFE tried to kill me. All of a sudden I was reacting to EVERYTHING. So please do tell me how I should exclude the phrase “before I was sick” from my vocabulary just to make your life easier. Insert eye roll here.

And friends and family have told me the same thing in relation to meds, foods, activities, makeup, lotion, shampoo/conditioner etc. They told me I needed to stop worrying about those things or “I was going to make myself react”. But they have never had to take one step in my shoes. They don’t know what it is like to be able to take a bite of food one day and have your throat swell for no reason even though you just ate that same food yesterday. Or a medication you have been using for 2.5 yrs turning on you overnight and literally tries to slowly kill you. And it takes you 5 months of pleading with drs to remove it and they refusing because “that just can’t be the prob” or “there’s no way that could be causing your symptoms”. Or allergy medications that are supposed to stop a reaction that you have used your whole life sending you into anaphylaxis. You didn’t have to lay in that bed, alone, listening to all the alarms go off while drs are calling codes and you are in and out of consciousness while experiencing so many different symptoms. You have never been treated so badly by people and doctors telling you there’s nothing wrong with you while you are crying and begging them to believe and help you. You have never thought that maybe it would be easier to just give up and let the illness take you from this world because that would literally be easier than fighting your body and all these people and you are just so tired. And you are suffering and no one believes you and they refuse to help you. They don’t even try to figure out what’s wrong before they write you off.

You have never went to bed a vivacious, active, go getter, accomplished, hard working person to literally wake up the next morn disabled, ostracized, sick and alone. You have never had to grieve the old you and let go of a life that once was but now will never be. You have never had to sit on the sidelines and watch life pass you by, watch people come and go and become lost and forgotten. You have never had to dig so deep to just keep going and keep fighting and to not give up and slip away while everyone around you calls you a liar and wants to leave you all alone when you literally can’t get up. And you’ve never had to push those feelings aside because you are too sick to deal with them right now. Because right now you have to focus on every single breath, you have to focus on making the room stop spinning just so you can crawl to the bathroom. You can’t walk because you will pass out. But just yesterday you were healthy and walking around. You have never had overnight become the next 4 yrs and counting.

No wonder I have PTSD.

So who are you to tell me I have to stop using the phrase “before I was sick”? Doctors, family or friends the like. If I listened to what anyone had said I would be dead. So, no, I will continue to use the phrase “before I was sick” because it’s true and it is pertinent to this disease. I’m not scouring the earth for answers that make your life easier, I’m doing it to make my life easier and better. Or I’m using it to grieve the loss of who I was before I was sick. So if me saying “before I was sick” makes you uncomfortable, frustrated or annoyed then so be it. Because that phrase is literally my life and I have to live it and be reminded of it everyday in everything I do.

Before I was sick I might have been just like you. But being sick has enlightened me to the truth. Because everything has changed since the day before I was sick.

Author: Erica Newbrough

#MCASAwareness #POTSAwareness #EDSAwareness

#MCASStrong #POTSStrong EDSStrong

๐Ÿ’™๐Ÿ’š๐Ÿ’›๐Ÿงก๐Ÿ’œ๐Ÿ–ค

I’ve started writing poetry again!

I used to write poetry back in the day to deal with hard times and to get my feelings out of me. I started this blog for many of the same reasons. I experienced horrible writers block for many years. I would sit down to write and just couldn’t come up with anything. This morn I wrote my first poem in YEARS! I’m nervous because I’ve never shared one publically. And I’m nervous about what people will think. But here it is guys! My first poem in years and my FIRST poem about my illness. Please let me know what you think in the comments.

Written by Erica Newbrough 6/23/18

#MCASAwareness

What do I say?

A lot has happened lately. Many great things and some things not so great. My daughter graduated Pre-K. That was great. She’s all enrolled in Kindergarten. She first graduated her IEP class at the beginning of the yr and we began transition to main stream classes. There was good and bad with that. We eventually came up with special accomodations for her to help her get through her day. Like taking her from the big bus and putting her back on the special education bus. It’s smaller, has less children, less chaotic and she can receive the one on one interaction that she needs. She does much better there. We have it set up where they come and remove her from her class once every hour for about 5-10 minutes to let her decompress. It’s too chaotic and overstimulating in her classroom for her. I wanted to her to have her own special aide but unfortunately her school does not provide that. She’s too advanced to be in the special education IEP classroom but she’s not quite ready for the large classroom with all the noise, excitement, chaos etc. She’s stuck in limbo where she has been for her whole life. She has gained some great qualities from this. Her socialization has gotten better for one. But there have been major set backs as well. She is now out for the summer. And she is doing much better at home with me. I am always stuck between whether it’s best for her to be in the big school, with all the big kids, with all the big noises, with the large groups and all the hustle and bustle that goes with it. Or whether she would be better off home with me. With maybe a teacher that comes to our home and teaches her one on one. But then I worry that her socialization will be set back. And I worry about not properly preparing her for real life. I always just worry.

They graduated her from speech therapy. Even though she still had areas that could use some work, by state standards she has reached all the requirements. So they can no longer keep her on IEP with speech therapy. Again stuck in that limbo. But kids like my daughter need that constant help to keep up. To stay caught up. Why does she, or all kids for that matter, have to fall behind before they can receive help? That’s not right and not fair. She has spent her whole life from the time she was inside my belly to the time she was born all the way up to right now working harder at EVERYTHING than any other kid. They didn’t even want to give her an 504 plan which she legally has to have because she has seizures. They said they could do it if I wanted and it made me feel better but that the things put forth on her IEP were things that would already be done in the classroom. I’m chronically ill myself and may battle brain fog but I am far from stupid. She would fall through thier cracks and my voice for her would try to be silenced and there is no way that is going to happen. So she has a 504 plan. And they blamed everything on her ADHD which is not true. And refused to put anything down for her Sensory Processing Disorder no matter how many times I said it and corrected them.

I watched my daughter graduate from Pre-K. And there wasn’t a parent more proud of their child than me in that audience. She was so excited and wanted me and her baby brother there so bad. She didn’t ask for anyone else. That made me feel so good as a mother. That maybe my hard work has paid off. That, in her own way, she understoood how hard I have fought for her and all that I have done for her her whole life. Mommy has done nothing but fight for her against everyone! Family, friends, doctors, school etc. And with all those great feelings of accomplishment I felt watching her and my feeling so proud for her, my heart also broke for her. See if you meet my daughter all by herself it may be hard for you to see her struggles, or her differences, or you may just think that my daughter is “bad” as these are comments I have seen and heard before. But when you put her up against her peers you see it. I see it. And it breaks my heart for her. I watched her try to perform the songs and the dances and participate just like everyone else and I saw her looking to others for cues on what she was supposed to be doing. But I also saw something that I hadn’t seen in her yet. I saw her starting to realize that she was different. That she caught on a little bit more slowly than the others. That she got tired faster than the other kids. (she sat down on the stage in the line to receive their diplomas while all the other kids stood nicely and yes I got pictures!) And my heart broke for her. But I also saw that she stands out, she marches to the beat of her own drum and I love that about her and hope that she never loses that, I saw someone work so hard for something and be proud and excited to accomplish it and want me there to witness and be a part of it.

Even after all this time, all these appointments, all these diagnosis (seizures, sensory processing disorder, ADHD, anxiety and OCD for starters) my daughter is still in limbo. We still don’t have a definite answer for what is causing all. She doesn’t exactly fit the autism description but she display characteristics. She’s not quite like the other kids but not quite different enough to receive some of the services that would be beneficial to her. We don’t have a name for what she has. But she is starting to realize that she is different. Hopefully she will accept that and run with it like the strong, independent, leader, trendsetter that she is. But maybe she won’t. Or maybe she will feel that way sometimes but other times she will feel sad, angry, disappointed, frustrated and just not want this anymore. The point is the time is coming soon that she is going to have questions. She is going to ask me why is she different? Why are these things so hard for her? Why can’t she do some of the things that she wants to do? Or why she can’t do things that the other kids are doing? And what am I supposed to tell my beautiful, spirited child? She deserves all of those things! I want to give her the world but I can’t fix these things for her no matter how badly I want to. What do I say?

She wants to do cheerleading so I signed her up with Parks and Rec. We just saw her neurologist and I wanted to get the ok from her. I know Izzy has seizures and I understand the logisitics. And I knew what she was going to tell me befor she even said it. But somehow it still hit me like a ton of bricks. Anyone reading this with seizures already knows what I am about to say. She can do cheerleading but she can only be the person off to the side cheering with the pom poms. Ground routine only. She can’t be the base, she can’t do stunts and she can’t be the flyer. And my heart broke so badly all over for her again. I know it’s not the first time and I know it won’t be the last time. But that doesn’t make it hurt any less. Or make it any less hard every single time. Her doctor said the problem is they do these things and fall in love and as they get older they want to try all the stunts or be the flyer etc and they can’t. They can’t. It’s not safe for them or others. Man that sliced right through me. I knew it was coming but it sliced right through me like a blunt sword. So you’re damned if you do and damned if you don’t right? Do you let them go ahead and do it now and let them fall in love with it? Or do you not let them to try and stop the disappointment they are going to feel later in life. My husband said let her do it now because we have to let her have fun while she can. I understand that. But it all flashed before my eyes right them. A motion picture of what is to come. There is coming a time all too quickly where she is going to start understanding these things. And I’m going to have to tell her no. Something that she is so passionate about and I will have to tell her that she cannot do it and it’s no fault of her own but sometimes our bodies don’t work like everyone elses and that’s not fair and it sucks but because of that she can’t do it. That she may have to lose passions an alter her life because of unfair circumstances. And that no matter how hard she tried or if she did everything right that life had already decided this for her! And I hate it! And it makes me angry! And it makes me sad. And it makes me cry when no one is looking. Because I know how that feels. And there may be some reading this and thinking that crying over her not being able to do cheerleading is trivial. Well I say to you that you have never felt a loss like that for yourself. And you have surely never felt a loss like that for your child. Because as parents we feel everything twice. Once for ourselves and again for our childrens. We feel not only our own heart breaks but theirs too. And it sucks! As her mother I just want to fix her and it kills me that I can’t.

Tomorrow we are embarking on another adventure to do with her illnesses. She is losing on the growth charts. She’s almost completely fell off of them. So we are going to see endocrine. I’m scared to death. There have been some scary things thrown around. Hoping it’s not as scary as it could be. But I can’t help but to fight back tears when I look at her. Look at how beautiful she is, courageous she is, how kind she is, how oblivious she is for now. I don’t want any of that to change. But come tomorrow our lives could change again as we know it. I’m not sure that I am ready but I also don’t have a choice. I do hope that we get some answers tomorrow instead of more questions. Because the fact of the matter is the time is coming for her to realize and ask the hard questions…and I don’t know what to say. What do you say?

Written by a loving, dedicated, scared and heart broken mother

We are all fighting some battle that no one else sees…or maybe they do…we are all strong in our own way!

#ChronicIllnessWarriors

Much love to all!

Mother’s Day Weekend

Being a mother in general is hard but rewarding. Being a chronically ill mother is that much more challenging. And being a chronically ill mother to a special needs child is that much more challenging. But you guys, in my opinion, the rewarding outcome is so worth all the struggles and challenges.

This Mother’s Day weekend we spent with my grandparents. One of all of our favorite places to be is with my grandparents in their cabin tucked away in a holler of the mountains. I had a doctor appointment on fri so we packed us with ALL of our things into our SUV and headed out to the cabin.

This weekend was a special one for me. My 3 month old son always needs me and always wants me. He loves to snuggle and give so many smiles. But he doesn’t like for other to feed him. It’s heart warming and exhausting that the only person he wants to feed him is mommy. Sometimes we just want a 5 minute break. We just want daddy to take over for a while which my husband is very good at. But my son will just spit that bottle out and scream and cry until I take over. As soon as he’s in my arms he takes that bottle and sucks it down. I love that we have that bond and that connection. For many reasons. I used to joke with my husband that when we had our son he was going to be a mommy’s boy because my daughter is such a daddy’s girl. And sure enough I got my wish! Maybe sometimes we should be careful what we wish for because we just might get it. ๐Ÿ˜‚ I’m joking of course. I love every second of it and wouldn’t change a thing!

My daughter was the complete opposite. She was, is and has always been very independent. She didn’t want us to snuggle her too much, she hated being swaddled and she didn’t like us to mess with her too much. She was happy and content entertaining herself. So it was very nice and surprising when she WANTED me this weekend. She wanted to cuddle and snuggle and she would come in my room each morning and wake me up with “I love you mommy.” And I loved every second of it.

Last night she was extra cuddly and snuggly with mommy. And she just wanted me for everything. And she came to me and was really sad. Almost in tears. And she said “Mommy did I make you sick?” This has happened before and its equally as heartbreaking every time. And I said “No baby. Why would you think that?” And she said “Because I didn’t cover my mouth when I coughed” and her lip was just quivering away. So I pulled her into my lap and cuddled her close and told her there was no way she made me sick. And that mommy was ok. And if anything she always makes me better! You guys! How heavy my illness must weigh on her as well! I don’t eat dinner with my family because I can’t eat anything at all. But she grabbed my hand and asked me to sit with her. And I did. And we talked and laughed and she told me how happy she was that I was sitting with her at the table. I made her night and she made mine.

I had a few favorite moments this weekend. Of course my daughter wanting and needing mommy. But I loved watching my kids play together. He’s 3 months and she is 5. But she is the BEST big sister ever! She sings to him, comforts him, talks to him and she has so much patience for him. She has no patience for anything or anyone in this world but she has it for “her baby”. That’s what she calls him. And he loves her as well. He looks at her, smiles real big at her, calms down for her and cooes and grabs for her. I hope as a mother that they keep this special bond they have. I worked so hard to keep her included in my everything during my pregnancy even when I was sick and didn’t feel well and I think all the hard work paid off. And of course spending time with 2 of the best people I know in this world, my grandparents. And watching the love and bond between them and my children. Memories we will always have and cherish.

But my most favorite part of this weekend was at church this morning. Everyone was meeting the baby they prayed so hard for throughout my pregnancy. And Izzy was making her rounds and talking to everyone. And I was watching her and she didn’t know. She was swishing and showing off her pretty dress that her mamaw had bought her. She turned around and she found me, our eye locked and I gave her a huge special smile just for her letting her know that I saw her and how special she was to me. That admist all the chaos and even with a baby now she was my first born, the one that made me a mother and I loved her and she was still at the center of my world. And that she still lights up my world. And in that moment I lit up her world and it spread across her face! She gave me the biggest, happiest smile and that’s all I could need or ask for as a mother. That my kids know how much I love them, that they love me and that they love each other!

I’ve questioned myself more than once on if I was doing things right. And I’ve been so hard on myself for not being the mother that I wanted to be due to my illness. I’ve felt guilty for not being able to do all the things the other mothers do because my body limits me. I’ve spent countless hours worrying over both of my children while they were in the womb and since they’ve been out. I’ve questioned if my failing body caused their ailments. But after everything that has happened to us, and because of me or in spite of my illness or her illness or whatever, I raised a very caring, loving and amazing little girl! And I’m just starting to raise an amazing, caring and understanding little gentleman. And these 2 are going to go out into this world and pass on all their greatness. So you see, despite everything, I must have done something right.

Happy Mother’s Day to all the mothers out there. The Chronicall Ill mothers, the biological mothers, the mothers that their babies are in heaven looking over them, adoptive mothers and birth mothers! To ALL mothers no matter your story, Happy Mother’s Day. We are all doing the best we can and even when we think we aren’t doing our best or that we could have/should have done more we are killing it. Our kids see our illness and it makes them aware and compassionate and understanding people and they are going to go out into this world and be the kindest people to others. What more could we ask for. They know we love them and as long as we continue to love them and make memories (no matter if its coloring on the couch or cuddling and watching kids movies all day) that’s what they will remember! Make those memories mamas and love those kids and they will carry that out into the world. Much love and best wishes. Be kind to yourself today and just enjoy those babies! Happy Mother’s Day!

“The Forever Never Again is so Hard”

It’s been a while guys and I have a bunch to update on. But life has been busy with a newborn. And I swear I don’t remember being this tired with my first. But I guess I was younger and not sick when I had her. But I will update soon. But today I want to talk about the forever never again.

I was actually blindsided by all of these emotions. I have spent my whole pregnancy preparing for never having another baby. I made peace with it. Not just saying that but I actually felt at peace with that decision. I always said if I got the chance to have my 2nd child that I would cherish every single moment and I would make peace with not having anymore. That I would be ok because at least I could go into this one knowing it will be my last and I would get the chance to truly cherish all these moments. Unlike with my first when I felt like my illness ripped it away from me. Then I had my little man. And everything changed. Im no longer feeling at peace with my never having another. I still feel like its being ripped away from me. I truly hate this illness! It takes everything good out of life.

I am so grateful to have my son. Some of you know that in the beginning we weren’t sure this pregnancy would be safe for me and were faced with a very tough decision. I’m so glad that we made the choice we did. Now he is here and he’s amazing and perfect! Everything about him is just perfect! But the more time I spent with him the more it hit me that he is my last one. I will never have these moments with one of my very own ever again. And that is heart breaking! I thought I made peace with all these feelings but here they are yet again.

Every diaper change, every bottle, every bath, every cry is one closer to never having that again. Everytime he grows its one step closer to no longer having a baby of my own and I find myself in tears and torn up by this realization. My husband goes for his vasectomy on Friday and I am seriously hurting. As a good friend put it “mentally I wasn’t ready to stop having kids but physically I wasn’t able anymore”. But it keeps going through my head ‘but I did do it’. I made it through pregnancy and birth which I thought would for sure kill me and I rocked the birth. But I was miserable during pregnancy and my body didn’t handle it well. So I logically know this is the right decision but emotionally I’m a wreck.

I think the hardest part about it all is that I feel very alone in this. I feel like I have no one to talk to about it. Everyone in my life is very much against me having anymore babies. And they say things like be thankful for the ones that you have, It was risky having Jaxson, Etc. Or my husband asking me if I was crazy. (It came from a place of love. He was shocked that the words were even coming out of my mouth after how rough pregnancy was for me.) But those things whether logical or not are not comforting and don’t help. I HATE this illness for taking this away from me. I HATE that I can’t do the things that a woman is supposed to be able to do! It breaks my heart and I can’t stop crying.

So I hold him a little tighter. And I snuggle him a little longer. And I stare at his sweet face and etch in my memory what he looks like now as my baby. My last baby. And when he cries I pick him up. Amd sometimes for no reason at all I let him sleep on me in the bed. And if anyone sees that as spoiling him then so be it. This is what I need to try and help me heal. This is what I need to cherish every second of this. Because I will never get this again. I thought knowing it would be the last time would make it easier but now I’m not so sure. I’m finding out that there isn’t anything that makes this easier. And unless you are a woman that has been faced with the forever never again you don’t understand. And you can judge me all you want. I wish I could be more like my husband who is just ok with it. He was able to accept it and adapt and move forward so easily. But men aren’t as emotional as women. They don’t carry these tiny, fragile little lives inside of them or birth them or feel them move inside of them. So they just don’t understand what it means and how it feels to never have that again.

So I may be “breaking all the rules” but life is forever changing. And when I thought about having kids I never thought that my life would look like this. So I’m adapting and doing what’sbest for me and my baby! The baby that I fought myself anf drs for, that I carried for 9 months while I was miserable, that I birthed into this world (one of the most amazing experiences of my life. Him and my daughter) and that I now hold in my arms and shower with love and affection for the last time. This is my last baby. ๐Ÿ’”๐Ÿ˜ญ “The forever never again is so hard!”

Erica Newbrough

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Vasectomy!!

Bittersweet. I really don’t know how many times I can say this or stress how much this word is the basis of my life. Everything in it and everything that happens always seems to be bittersweet. It’s never completely good, completely bad or ideal. It’s just bittersweet. We had the consult appointment for hubbys vasectomy yesterday. It went really well. The date is finally set for March 9th. That’s exactly one month from now. I am happy and relieved to have it set and for him to be gettig it done. But there is still a part of me that is sad a grieves the fact that that means no more babies for us. Don’t get me wrong I don’t want to do this again. Both of my pregnancies have proven to be hard and difficult and potentially dangerous. Both of my kids, so far, have pulled through great. But its super hard on me. And also dangerous. I don’t think that my body is made for child bearing. And that is heart breaking. With how sick and hard they have made me, I know that I cannot do this again. That the next time will likely be worse and I have a family that I love very much and they love me. They need me and I want to be here for them in every possible way. And that requires me to not only be here but to be as healthy as possible. So that means no more pregnancies. And I am ok with that for the most part. But I think as a female there is something instilled in us that we are supposed to be able to do this. This is the one thing in life that we were made to do and when we can’t we feel like we are damaged and failures. It affects us on a very emotional level. 

I started making peace with the fact that I wouldn’t have anymore children before we found out that I was pregnant with baby Jaxson. But I was still very much not ok with it and hurting. I told myself that if I ever got the chance to have just one more I would cherish every moment, every kick, every heartbeat and every sonogram and then I would be ok. I would be at peace at not having anymore and that if we ever decided to have more that we would continue with the foster to adopt plan. And for the most part that is still true. I don’t want to do this again. I never want to feel the way I have felt during this pregnancy again. I don’t ever want to tempt fate again. I am ok with that. But it is still hard to let go of the all the good parts of pregnancy. The happiness and excitement of finding out that you are going to be bringing another life into this world. The kicking and rolling and butterflies in your stomach. Hearing the heartbeat of your child that you are growing and giving life to. Seeing them and their little personalities on the sonograms in the doctors office. Setting up the nursery and getting things ready for baby to come. That is so exciting and fun! The terror and excitement of getting close to baby getting here. And of course the actual delivery and getting to meet your little one. Getting to hold the life that you made and brought into this world while checking that all 10 fingers and all 10 toes are there. The getting to share this blessing witht he ones that you love. It is so hard to say goodbye to that. 

I am thankful though that I had the chance to know that this would be the last one. That way I was able to cherish every moment and do everything that I wanted to do this pregnancy down to the announcement and gender reveal. Even though I was probably the only one that really enjoyed that. Not everyone that I expected to be happy and receptive of this pregnancy were so supportive or happy. But the ones that mattered were. I was able to experience the whole thing also knowing that it would be the last time. It gives it a new meaning. You feel it much deeper. But not everyone gets that chance and I am well aware of how awful that feels. Because I didn’t think I would ever get that chance. My husband might think i’m a little nutty sometimes lol but he supports me and goes along with all of it because he knows how important it is to me. He saw me at my worst crying and breaking over not ever getting this chance again. Both of my children are our miracle children because neither of them were supposed to make it. But they did! I am so thankful for all of that! 

So there has been alot of joking between the hubby and I because he is taking one for the team. He didn’t want to go get his “balls fondled by a man” but he did that for me. He doesn’t want to get his “balls chopped off” and he made sure that he told the doctor and the nurses this. He had them both laughing. If you know my husband you know how funny he is and how he makes light of every situation. That’s why I love him so much. 

So D-Day has been scheduled. The countdown has begun. I hope that I handle this as well as I hope to. And I am so thankful that hubby agreed to take one for the team. It is much easier on him to do this and I’m afraid of altering my body. I don’t want to anger the mast cells. Besides I will have pushed 2 of his babies out and the latter has a big head and broad shoulders and will be a large baby just like him. So I figure he can take one for the team! Love ya babe!