“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. 💔😭 “The forever never again is so hard!”

Erica Newbrough








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!

How My Babies Have Saved Me

I have said over and over how my daugher has saved me more than she will ever know. And how much I really hope that she never does truly know. Because if she knew that means that she has children of her own and she is suffering from these awful illnesses just like me. I don’t want that life for her. And I pray that she escapes this hell. But that small, vivacious, happy, loving little girl with the infectious smile has saved me from the depths of darkness and kept me from giving up and giving into this illness. She says the craziest things that make you laugh and her laugh alone is enough to make you lose it. She also has her dark moments. She fights her own battles and own illnesses but she rocks it just like the rock star she is! She doesn’t know a life any different from this one like I did. So her illnesses have never slowed her down or stopped her. They have never brought her down or made her feel different. This is all normal for her. I’m so happy for that. But I knew that there was no way I could leave this world and leave her alone without her mother. Yes she has an amazing father who would undoubtedly take care of her and do an awesome job but she needs her mother. And I need her. When I was so sick at the beginning I truly believed I was going to die. I cried to my husband every night in bed and would tell him I know I am going to die. But please tell my baby about me everyday. And tell her everyday how much I loved her and wanted to be here with her. He would always reassure me and tell me that wasn’t going to happen. I didn’t believe him. But you guys here I am. And I know in my heart that I wouldn’t be if it wasn’t for that gorgeous little girl that stole my heart as soon as I saw the positive pregnancy test. 

Don’t get me wrong I have given up more times than I can count. I have screamed, cried, threw fits, hit things, broke things and just collapsed in despair knowing that I just could not do this anymore. That I couldn’t take not one more day in this life. I couldn’t take one more day not being able to eat. I will look at others eating and I break inside and I just get angry and sad and I give up. I couldn’t take one more day of reactions or not being able to get out of bed. Of not being able to take a normal family vacation. Hell just a normal family outing. That I couldn’t take one more day of not being able to eat out at a restaurant or join my family or friends at one. That I couldn’t take one more day not sitting down for dinner with my family. That I didn’t want to have to hear my 5 yr old explain to strangers that I can’t eat and that’s why mommy has to drink that drink. Or hear that she has asked someone if mommy is going to die. 

But then I look at her and I know that I could never leave her. That I don’t want to miss one second with that amazing little girl that my husband and I created together. She was our miracle child because when I was pregnant with her all the odds were against us. Both of us were in danger the whole time. She was most likely a twin and her twin didn’t make it. And despite her implanting wrong into my uterus, despite the hemmoraghing, despite the fact that I went into preterm labor with her at 6 months (we thankfully managed to keep her in until 36 wks) and despite going into preeclampsia at the end she survived it all. Not only did she survive it but she thrived. Now we are realizing that maybe she didn’t completely escape all damages from all of that. But if you knew her you would never know. She survived all of that and was our miracale. And that miracle has brought me so much strength. So I might give up for a little while but my fight always returns. I fight because she needs her mother there to do her hair, to talk about boys, to get her through her first heart break, her first dance, her prom, her wedding day. She needs her mother there to call when she has children to walk her through all those hard things that she will definitely go through. To tell her that she is doing a great job and laugh a little while she freaks out. We need each other. And I will use every breath in my body, every ounce of strength I have and will fight to be here for all of those things because that is what she deserves. These illnesses have taken so much from me but I refuse to let it take that away from me or her. As long as I can help it. As long as I am breathing I will fight because of her. She has lent me her strength in life and doesn’t even know it. 

And now I am pregnant with her little brother. He was not supposed to have happened. Lol We had decided that we were not going to have anymore children because it wasn’t safe for me. We knew we weren’t done having kids so we decided to foster to adopt. You guys I was heart broken that I was never going to have another baby inside of me. That I would never feel them move or kick, or hear a heart beat or see them on a sonogram. That I would never get that moment in the hospital. It just so happens to be my favorite one. When they enter the world and you finally get to meet them AND then you get to share them with all the loved one’s in your life. You don’t know pure joy and happiness until you have experienced that moment. In those moments everything is perfect even when they aren’t. But I knew that we would be helping another child that needed us. And that is a different kind of happiness all of it’s own. But still it’s hard to swallow that you will never have anymore of your own when you weren’t expecting it. It feels like something has been ripped away from you. You never quite feel whole. There is an emptiness in your heart where it should be full and nothing will ever truly fill that void. 

We went forward with the foster to adoption plan. The day that we signed up I was 7 days late. But I just figured my cycle was off. It wouldn’t be totally abnormal considering the illnesses and how sick and malnourished I was. Besides we had been extrememly careful. But hubby felt that I needed to take a pregnancy test just to be sure. So I actually didn’t want to but did it to appease him. So we went to the store and I bought the cheap ones. The .88 cent ones. We came home and I went ahead and took the first one. We waited about 2 mins and I thought I saw the faintest of lines. I said something to hubby and he rolled his eyes because any woman reading this that really wanted a pregnancy test to be postive already knows how you will see “faint lines” and how you will angle it up at a light to try and see a line that is not there. Lol But he looked at it and we watched it grow darker together. And I said that really is a line. There really is a line there. It was faint still but definitely a line. I freaked out!! I cried and was happy and scared and having a a panic attack all at the same time. Hubby had to calm me down. I was happy but we had decided this wasn’t safe. So what do we do now? What is going to happen? I have a beautiful little family that needs me here alive and well. But this is something that both of us wanted so bad. Bittersweet. Just as most things are in my life. 

Well you guys I couldn’t go off of that one test. So you know I had to take 3 more just to be sure! And every test was darker than the last and showed up quicker than the last. And the last one actually read pregnant. So at that point I had to start believing that I actually was pregnant. I got pregnant 2 weeks after I should have been able to. We were so careful. Looks like God had jokes and other plans for us. At that time I thought that it was just blessing us with a baby that we really wanted and had given up on safely having. But now I know it was much more than that. 

As you guys know from my other blogs that I reacted to the pregnancy and lost all foods. In the beginning everything seemed hopeless and it seemed as though I wasn’t going to survive the pregnancy. But look at me now. Here is how baby Jaxson has saved me so far and he’s not even here yet!

Before I got pregnant I had 4 safe foods and no meds. I reacted to literally everything so badly that I had developed PTSD from my reactions. Getting me to try new meds or foods was impossible. I was literally scared frozen and in place. I was stuck in this world of unchecked fear and rightfully so. The only way I would take meds was if it was a die if you do and die if you don’t situation. Might as well try anything if it’s inevitable anyways right? Well when you get pregnant your appetite obviously increases. I was literally starving on ensures. Baby wanted more. The cravings would bring me to tears because all I wanted to do was eat and feed my baby properly. Unfortunately that still hasn’t been able to happen but not for lack of trying. That’s the difference. I let go of fear for my baby. I tried foods. I failed them. I reacted and would tell myself this is not worth it and i’m not going to do it again. But I did!! And at the beginning when I was in the hospital I was terrified but I let them try things to save me that I probably would have never endured or tried had it not been for being pregnant. And look at me now trying new meds!! And they are working!!! Well it may only be one med so far but I have hope again for the first time in forever. And I know without a doubt that I wouldn’t have tried any of that if it wasn’t for baby Jaxson. He gave me unbearable heartburn and acid reflux and I couldn’t drink milk so I had no choice but to try an h2 or else suffer and possibly get an ulcer in my throat. Yes it felt that bad! And that happens to be one of the first meds they put you on as front line treatment for mast cell disease. Since that went well I now am excited about starting my h1 which is an anithistamine. I am going to try clairitin. And if I get on those before my induction in couple wks that means that I have safe rescue meds and premedication meds that can help me with the labor and all the meds that I have to receive there (that is another update for a different blog). And that means that after baby is born I can try mast cell stabilizers right away that will hopefully be the game changer for me like it has been for others and I will start getting foods back! Which is huge! And that means that I can start corlanor for my POTS treatment. I have failed every treatment for that as well. And all of that collectively means hopefully a better quality of life for me, for my kids and for my family. It will never be the same as what it was. And I will always be cripples by these illnesses but it can be better. And that’s my goal is better. 
Actually my goals for 2018 were get on a treatment plan that works and I don’t react to, get foods back and have a safe and healthy delivery for me and baby. It wasn’t going well or looking good thus far. But things are finally starting to look up. 

So even though Jaxson is not here yet he has given me the strength, courage and want to try new things. He has helped me conquer a fear that only others with MCAS could possibly understand. And thank goodness that there is starting to be a light at the end of this very long and dark tunnel. And Izzy has kept my mind in the right place and on the goal. She has reminded me how important I am and how important I am to her and how I need to be here. How I can’t give up becuase no matter how bad the day and the life is, it would be so much worse without me in it. She needs me. Jaxson needs me. My husband needs me. You don’t have the luxury or capability of giving up when you have little ones looking up to you. They need you more than you could ever know. So if there is anyone out there struggling today and you are reading this; hold on. This too shall pass. It may not be all that you want it to be but it will get better. Live for the moments if you have to. The moments of hearing your little ones say I love you, or coming home and telling you about their day, or asking to cuddle and watch a movie, or even the really hard moments to deal with when they are having a melt down. You may want to rip your hair out but they are showing you how much they need you. Who can understand them better or give them the compassion that they need in that moment better than you. This goes to fathers and mothers out there. Our babies are our strength and that’s ok. Sometimes that is all there is to keep me going. Use it! So whatever you have to do to get up and fight again tom. It’s ok to give up for today as long as you try again tom. Do it for those babies! Gentle hugs and love to all!

Author: Erica Newbrough

#MCASWarrior #POTSWarrior #EDSWarrior 


Finally A Win!

So as most of you know that pregnancy is very hard. And some women suffer from heart burn and acid reflux the whole time. As for me I tend to get it terribly at the end. It happened with my first and is now happening with this pregnancy. I am 35 weeks and a couple nights ago I was awoken several times throughout the night with horrible burning that felt like it was going to burn a hole right through my throat. The 3rd time it woke me up at 4:30 in the morning I could not go back to sleep. It didn’t help that I also had a puppy in bed that thought it was play time. Lol But I was up for the rest of the day and it didn’t go away. All I can drink is chocolate ensure enlive and water. And you guessed it they both make heartburn and acid reflux worse. I have not been able to tolerate any h1 or h2 for my mast cell treatments but I could not stand the burning a second longer. So I finally decided to try zantac aka ranitidine. It was a 150 mg pill but I decided to break it in half to make it 75 mg. GUESS WHAT GUYS!!! I took it and no reaction!!! Yay! You have no idea what a big win that is for me! 

Although it took care of the buring it didn’t take care of the reflux part. When I tried to go to bed last night I was pretty much choking on it. So I am going to up my dosage tonight before bed to the 150 mg dose. But I also think that I am going to try pepcid. I was told that that works much better. And the chewables have extra magnesium and calcium which is great for me because all I get is the ensures. I’m hoping that goes well too. So not only do I now have no heartburn from the pregnancy I have a start to my mast cell treatment. The first line of defense for mast cell activation syndrome is an h1 and an h2. This win has given me new hope and the will to try new things. So if this continues to go well for the next few days I am going to add in clairitin. That will be my h1. I am hoping that will go well too because that gives me some premedication and safe rescue meds for my induction coming up in a few weeks. AND that means that after my pregnancy I cant start my next medication. I will be going for either cromolyn or keitofin. Both of which are mast cell stabilizers that MAY help me get foods back!!!! Do you know how big that would be?? OMG so HUGE!! The other med I want to start is Corlanor for my POTS. You guys I haven’t felt this optimistic in a long time. Everything that I have been trying has been failing and I really needed a win. 

This may seem small for some people. And there are probably some people reading this that really don’t understand why being able to take an antacid is a big deal. But people that suffer from Mast Cell Activation Syndrome have a hard time with medications among other things. The fillers and the inactive ingredients cause reactions from mild to severe. Most of my reactions are pretty severe. And anything that even gets me a step closer to not starving is amazing to me! So please send all the good vibes that you can and if you believe in prayers please send up a few for me. I need this so bad. And this win has definitely lifted my spirits. Mast Cells: countless wins. Erica: 2. Seems small but its really so big!! 

Life Has Been Crazy Lately…

I really would like to share more posts. And I have some great posts in mind that I need to get to writing. But life has been a bit crazy for me. I just wanted to let everyone know a bit of what has been going on. As you know I am pregnant with Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome and Ehelers Danlos Syndrome. I have some other issues but for now those are the biggies. As if pregnancy isn’t hard enough why not throw some crazy rare chronic illness in with it right? This pregnancy was never planned. In fact we had planned to not have anymore children and to foster to adopt. My husband was a foster child that was adopted and it’s something that has always been close to our hearts. It was heart breaking to make the decision to not have anymore of our own but it was important that I be here for my husband and child that I had already brought into this world that needed me so much. We didn’t want to take any chances. We would revisit the idea again if I got to a more stable place and we felt that I would be able to sustain a healty pregnacny. Of course with chronic illness there’s no way to know for sure. But God and life had other things in mind for us. 

We were actively trying to not get pregnant but I cannot take birth control due to my illnesses. I had mirena and not only did it adhere to my uterine wall but it tried to kill me. Thank you MCAS. So I had it removed and was told that I could never take another birth control safely. Great! I also have a latex allergry so condoms were out. We tried the nonlatex ones and I still reacted. We were out of options. So we used natural methods to track and prevent pregnancy. The day that we signed up for foster to adopt I found out that I was indeed pregnant. Shocked and scared is an understatement. It somehow happened 2 wks after it ever should have been able to. Yall I took 4 pregnancy tests because I didn’t believe it! Lmao! But even through being scared we were happy. We decided that we were just going to stay positive and cherish every moment of it because we never really thought that we would get these moments again. So that’s what we did. And that’s what we told the people in our lives. Not everyone was supportive and we didn’t have room for any negativity because what was done was done. We didn’t believe in abortion. Don’t get me wrong I am pro choice. Every woman should have to right to choose. But that doesn’t mean that I don’t have my own personal views on abortion. And my personal views were that for me it was not the right option nor would it ever be. My husband felt the same way. 

Things were going fine at first. I had some POTS issues but everything was still manageable for the shape I was in. I was already malnourished and only had 4 safe foods. So it was a struggle and we didn’t know what we were going to do. But I had set up appointments with my specialist to help us figure it all out. We were looking at a peg tube most likely. And then it happened. I reacted to the pregnancy. Actually more accurately I reacted to the hormones. I react to my own hormones as well as synthetic ones. Which is why I cannot take birth control. I lost all my foods. I couldn’t drink water. I couldn’t get anything in. I would get severe stomach pains with one bite or one sip. And already having no reserves and being 103 lbs I went down quick. I was admitted to the hospital for a wk. They inserted a temporary feeding tube up my nose and down my throat and administered elemental formula. I kept it in for 5 days. But I reacted to the feeding tube itself not the formula. I had severe referred pain to my throat and ear and I couldn’t talk and was miserable. My heart rate and blood pressures were unstable. My blood sugar wouldn’t stay up. I stayed nauseous and weak. Even with what I was taking in from the feeding tube I lost weight. By the time I left he hosp I was down to 95 lbs. When I took my first shower and saw myself all I could do was cry. They ended up having to take the feeding tube out and they didn’t feel that the peg tube or TPN were safe options for me at that time so they put my back in ICU and tried to desensitize me to ensure enlive. Thank goodness that it worked. I have literally survived off of that and water since I was 8 wks pregnant. And yes it can be done. 

But while I was there I was treated terribly. That’s probably best suited for another post. But I wasn’t believed and sent through a pshych evaluation…again. It was determined I wasn’t crazy and was actually sick. But my status was and remained critical. It seemed as though they weren’t taking my situation and healt seriously and was only focused on babies. Hubby and I didn’t believe that I was going to survive the pregnancy. I went down fast and heart with life threatening issues and no real way to fix them. They didn’t consider many option safe for baby so therefore wouldn’t try or implement them. They didn’t believe or listen that I was reacting to my own hormones. They didn’t understand MCAS or POTS. And Hubby and I were faced with a decison that we never thought that we would ever consider. I hate to even think about it. I agonized over this decision. I cried constantly. I wanted another baby more than anything. It was alive inside me. It had a heart beat. It was growing. It was a miracle that my husband and I created. How could one ever think about destroying such a beautiful thing? But I was dying. I had a beautiful and wonderful 4 year old here that needed her mommy. I had a husband that loved me so much that needed me to be ok. How do you choose? It was heartbreaking and I never thought I would ever be in that situation. 

We prayed about it and we talked about it and I cried about it. And ultimately we didn’t see any other way. I was broken inside. I never wanted to feel this pain again or go throught this again. Be forced to ever face this decison again. I feel guilty even now thinking back on it. Even though I know that it would have been the right decision if I couldn’t receive the help that I desperately needed. Then a miracle walked throught the door. I don’t know if you believe in God or a higher power of any sort but I do believe this man was God sent. His name was Dr. G. He stood up for me to the other doctors that were trying to bully me and labeling me as all kinds of terrible things in my chart. None of which were true. He walked in, he listened, he BELIEVED me and I gave him the top specialists email on my condition. He emailed him right away and received a response. I was set to be discharged the next day and he rushed to the hospital to meet with me face to face before I left. He had heard back from the world specialist and they were making a plan to help me. And between the 2 they felt they could safely get me and baby throught the pregnancy. You guys do not know how much this man changed and saved our lives. All of our lives. So lets fast forward to the present.

I have had many challenges with this pregnancy. It has certainly not been easy. And if you have never been forced to starve you have no idea how much harder it is to do it while pregnant. I started having labor contractions on and off since about 6 months. Thankfully they were’nt changing anything but unfortunately the meds they use to stop them were not safe for me.  So I just had to suffer throught them. Right as I was about to go into my 3rd trimester things started going crazy. My POTS went out of control and I started having mast cell attacks again. They started out small and progressively grew. I told my drs and begged them to do something. To induce labor and take the baby because I knew what was coming and I knew that it wasn’t going to be a safe enviornment for my baby anymore and that it definitely wasn’t safe for me. They refused of course. It’s too early. Well at 33 wks I went into the hospital for what I was sure was labor. I had dilated 1 cm and effaced. I was sent to my delivering hospital 2 hrs away to be monitored. Ultimately progression was very slow and stalled out. I was sent home. That was a sunday night. I won’t even go into how we got stuck in parking garage and everything that could go wrong went wrong. I’ll save that for another time. Lol On wed I saw my dr who confirmed I was in a very slow active preterm labor. 

On Thursday morning I woke up feeling normal. Everything was fine. Then all of a sudden I wasn’t fine. I was going into a Mast Cell attack. I texted my husband and let him know as I was trying not to panic because I knew this was going to be a big one. He told me to go lay down and try to sleep it off. I was home alone and terrified. I was standing in my kitchen when all of a sudden I was hit with a huge dizzy/vertigo wave. I almost passed out. My body felt like it was on fire and freezing at the same time. I would continue to go back and forth from heat flashes to cold chills for hours. I got the worst pain in my stomach and I just knew I was in trouble. I grabbed the puke bucket and headed for bed. I laid there in utter agony for a while and then it happened. It started with the diarrhea and then came the violent vomiting at the same time. I can’t afford to lose anything because I barely get what I need and baby takes everything. These kinds of situtions can become critical very quick for a person like me. POTS also dehydrates me on a daily basis because I don’t retain water so this was bad. And then the vomiting wouldn’t stop. I laid on my floor so weak I couldn’t get up and terrified I was alone. Texted hubby to come get me. He had to literally scoop me up off the floor, dress me, carry me out to the car and take me 2 hrs away to my dr. Once I got there I couldn’t even make it inside so my dr came out to me. He took one look and said hospital now. So off to the hospital I go for an overnight stay. My contractions amped up and I was severely dehydrated. It took them hrs to locate the special tubing I needed for fluids. I finally started receiving my fluids and thankfully had no reaction. I had dilated another half a centimeter and effaced more. He had dropped further too. Previously sitting at -3 he was now sitting at -1. I begged them to take him. My body can’t keep doing this! I can’t keep doing this. It’s only going to get worse. Even though baby is ok I need to be ok too! At this point guys I am 34 wks. And they still refused. I am so frustrated and aggravated it’s not funny. I really do need to be ok too. Welcome to the life of the chronically ill. 

I spoke to anasthesia while I was there as well just in case my labor didn’t slow with the fluids. I was told that my plans of a natural child birth were not safe. What was happening to me was that as I labored and contracted it was causing too much pain and stress on my body. That was making my mast cells degranulate and release histamine which was causing my reactions. Therefore, as I progressed into labor everything would become more intense and cause even more degranulation and histamine release and cause more and worse reactions. My options are epidural without the bolus or c section. C section poses more risks for me so they are opting for epidural without bolus early on before things can start going crazy. I did not take this news lightly. I cried. 

The fluids helped things calm down and I was able to start taking in water and ensures again. The vomiting had stopped and my labor slowed down. So I stayed the night for fluids and observation and was sent home the next day. It would still be days before I completely recovered from the mast cell attack though. I basically slept and contracted. On sat I lost my whole mucus plug. After that the pressure started mounting. I have never experienced pressure like this before. In so much pain I literally couldn’t move. It was awful. Then the contractions started picking up. So on sun I went to local er to be checked. Everything was still the same and I was sent home. UGH! I have given up any hope of him coming. I’m just going to stay in pain and in mast cell attacks. 

Today I have a dr appointment to discuss what happened and try to get home fluids ordered and a home healt aide to sit with me. It’s dangerous to be home alone when those attacks hit. So wish me luck on that becuase they are not easy to get. We are also going to talk about an induction date that i’m hoping will be at 37 wks. I am 35 wks today. So this is what has been going on in my crazy life. Never a dull moment. I will try to keep everyone updated and to get more blogs up soon. Life with chronic illness is never easy. 

Bittersweet Dreams

This morning I woke up happy and sad at the same time. Bittersweet. I had the best dream. It was actually more of a memory. But it was one of those dreams that felt so real. Like you were living in that moment. My husband and I were dancing under the stars. We used to spend summer nights at a family campground. We would both drink a little bit and just let loose from a very hectic and busy week. They would often have music and a dance floor at the teepee with a DJ. The only time my husband dances is when he is drinking. Haha! As for me I love to dance. That was the best way for me to let loose and relieve stress. It was a beautiful summer night. Not a cloud in the sky and you could see the stars. There was a gentle summer breeze blowing and the sweetness of the fresh air. We were surrounded by friends and family but it felt as though it was only him and I in the moment. We were smiling, laughing and having a carefree fun time. We were spinning around the the dance floor and having the time of our lives. We were so happy and in love and had no idea what was in store for us. But in that moment nothing else mattered. It now seems like a lifetime ago.

There were many a summer nights like that. We would get into all kinds of shenanigans and do some crazy things. We were living. And what I wouldn’t give to go back to that life. Or just that night. I used to be a very fun and outgoing person. I knew how to take a dull and boring evening and turn it into a night to remember. I knew how to live and love life. I could be the life of the party or I could be just as happy sitting at home curled up on the couch watching our favorite tv shows. Back then I had the choice. I was vivacious and always down for a good time. It didn’t have to be a party. I would give anything now for a family day on the beach. Which is my favorite place. But unfortunately I can no longer tolerate the heat. It will turn into a crisis real quick. There are so many things that I wish that I could just not think about and just be able to walk out of my door and go do. But everything requires so much planning. 

I have to be sure that I have extra water and the right amount of ensures. I have to be sure that I have access or can quickly get access to a cup and some ice for my ensures. I have to drink them about every 3 hrs or my blood sugar crashes. That’s the only “food” I get. I have to be sure that where ever I go, even to someone elses house, that I have a place that I can escape to to cool down if they have their ac/heat set at 70 degrees. 70 is way too high. I need it to be around 65 at least. If we are going outside anywhere I have to be sure that I have a place indoors that I can get to in a hurry to cool down, lay down or just calm down if my system starts going haywire. I have to be sure that I have icepacks and proper clothing. And I have to be sure that I have an escape plan for if I need to leave in a hurry which I often do. Even if all conditions are perfect just the stimulation of being around people or me talking to much can cause me to degranualte into a mast attack or cause a POTS flare. It’s so crazy how much mine and my family’s lives have changed. I often look at the normal people around me and get so jealous. It’s not their fault and they have done absolutely nothing wrong. I wouldn’t really want them to change a thing because all they are doing is living their life the way I would love to be living mine. But it can be very hard to be the sick one in the sea of healthy functioning people. So often times I stay home where i’m safe and don’t have to face what I can  no longer do. But I never really escape it. It is always there lurking in my mind and in front of my face. 

And sometimes it even creeps back into my dreams. It is so heart breaking when you are living it up in that dream and feeling so alive. You can feel the wind on your face, his hands around your waist, the sand on your toes and you can feel the pure and utter happiness that has been missing for so long in your life. You don’t know that you are sick in that dream. You feel like the old you. The one before chronic illness came in and destroyed everything. Then you wake up. It usually takes a few seconds. Then the crushing wave of reality hits you. It was just a dream. A wonderful, agonizing, bittersweet dream. You are happy for the memory. You are happy to be able to revisit that time in your life where you were carefree and vibrant and living life to the fullest without any knowlegde of what was to come. And then you are hit with the wall of grief and loss that comes from losing it and knowing you will never get it back. That you will never again be that same person. That you are nothing more than a shell of who you once were. And that is a crippling feeling because there is nothing you can do about it. So you let the memories slowly leak from your eyes and slide down your face. You smile while your insides break. You debate on wheter it was a sweet dream or a nightmare. And then you settle for bittersweet.

Author: Erica Newbrough

#MCASWarrior #POTSWarrior #EDSWarrior


It’s A Bad Day And Not A Bad Life…Right?

Today is a bad day. It didn’t start out as a bad day. I woke up and I cleaned my house. Fed my kid, fed my animals, drank my ensure and medicated everyone that needed to be medicated. After all of that I was thouroughly exhausted just as I knew I would be. So I came and laid down. Now I am in a reaction. I am hot. And not like the kind of hot that you can cool down from. It feels like my body is on fire. Head to toe. But my face feels it the worst. I am flushed and my eyes burn. Not only do they burn but they are swollen and sore. My head hurts and feels hot but if you take my temp I have no fever. As if all of that wasn’t bad enough my throat is swollen. Not only is my throat swollen but my lips are swollen. And my tongue feels swollen. I am extremely exhausted. But not the kind of exhausted that sleep can fix. This whole ordeal is exhausting. The lips and tongue are fairly new symptoms for me. Those are not part of my ususal symptoms. I am pregnant with multiple chronic illnesses. And even though I tell the drs that they are only getting worse as the pregnancy progresses. They don’t listen. They are so worried about the baby and I feel left out. Of course baby is important. I don’t want anything to happen to my child that I am carring in my broken and desecrating body. MY BODY. That I live in every single day of my whole entire existance. The body that I know better than anyone else. But no one wants to listen to me. I don’t have a medical degree so I can’t know what I am talking about. It is so infuriating. I feel that the longer that they keep this pregnancy going the more at risk I am and so therefore baby is at risk. I HAVE TO BE OK TOO!! Did I say it loud enough for the people in the back?? 

I then have to further exhaust my brain and myself going through every thing I came into contact with that day, everything that I smelled that day, everything that I touched that day, everything that I did that day, what possibly stressed me that day, the lights, the noise, the stimulation, the temperature, etc. Usually I come up with I have absolutely no clue what caused it this time. And when I do think that I have figured it out I get to enjoy hearing everyone else say I don’t think that’s it. Or that can’t be it because you were fine with it yesterday. It can be hard for everyone to understand, even when they have watched the same thing happen over and over with different things, that just because it was safe yesterday does not mean that it is safe today. And it is absolutely infuriating to have to explain it over and over to people that don’t get it, aren’t going to get it but want to argue with you about it anyway. 

This is an everyday battle for me. Sometimes I have good days. But most of the time this is how my days go. Some days I handle it better than other days. Today I just feel alone and trapped. I didn’t want to tell anyone that I was reacting because people get tired of hearing it. I guess in their heads they think that I should be used to it by now. But you never get used to it. And it never gets less scary. Once a reaction starts you then have to wonder will it stop before it reaches anaphylaxis? Will this be the time that I actually have to use my epi? How long can I wait until it’s time to use the epi? I’m terrified of the epi pen by the way. I don’t react well to meds. And I feel like that will probably make me react even though it’s supposed to help. 

I am hungry and haven’t been able to eat for months. But I am starving. I was thinking of trying new foods and then out of no where this happens. It’s always something. I believe it is caused by my pregnacny hormones. All these reactions. I know I lost my foods because of it. But have fun trying to get a dr to believe you. Insert eye roll here. However, they have no solid leads of their own. Which is exactly why I don’t rush to the hospital. They do nothing for me and send me home. They usually say things like well we can’t see your swelling. We would need a scope. And then don’t do the scope but send me home. I’m so sick of running into fucking brick walls. I’m so sick of fighting and getting nowhere. Always treading fucking water just to continue to sink. No one listens. No one cares. Everyone tells me what it can’t be without any input on what it could be. No one will take my complaints seriously. When I ask to try different meds I am told no because they are just to scared that I might react. But my reactions aren’t real remember?? Can’t have it both ways. And the longer that this pregnacy continues and these hormone levels rise this will continue to get worse. I am 34 wks in 2 days. I get that it’s early but I know when something is wrong with my body. May not always know what but I know when something is off. 

I am just so sick and tired of suffering and being tortured by my own body. This is ridiculous. No one should have to live like this! I don’t even know how I do it most days. I wasn’t given the choice I guess. I just suffer in silence more than people know. The one’s that think I complain too much have no idea what is really going through my head at any given point throughtout the day. I constantly want to just give up. It’s just not in my nature. And giving up isn’t an option when you have kids that need you. But geez how much can one person take? Can I catch a break please?! 
So is it just a bad day? Or is it a bad life? I was dealt a really shitty deck of cards and I would love to fold and try again. But life doesn’t work like that. So don’t worry about me. I’m fine.