Happy Holidays!

However you celebrate the holidays and New Year, we wish you all the best and hope that 2014 is prosperous and joy filled for you all. Thank you for reading and communicating. XOXO

Man's search for meaning

"We must never forget that we may also find meaning in life even when confronted with a hopeless situation, when facing a fate that cannot be changed.  For what then matters is to bear witness to the uniquely human potential at its best, which is to transform a personal tragedy into a triumph, to turn one's predicament into a human achievement....When we cannot change a situation - we are challenged to change ourselves."

Viktor Frankl
"Man's Search for Meaning"

I promise I'll get back to you!

I get a lot of emails, sometimes in spurts, sometimes evenly spaced but for some reason this week I have been swamped. And I love it. I love that you all feel comfortable emailing and asking questions, sharing your story and discussing what parts of my blog helped/didn't help. I normally try to get back to you asap but some may take longer this time around. I love private emails and the connections I've made, helping others through their hard times. I like spending the time answering your questions, brain picking, and making that connection so please bear with me :-) We are also going through a major life change right now that I'm sure I will write about down the road so I promise I'm not ignoring you. If you emailed and haven't heard from me for weeks please email me again and I apologize for that. Please use amorecappa@gmail.com as I don't check the angelheartsforever one very often. And I just want to thank you all who comment and contact me. As much as you are looking for information/reassurance/more details, I assure you, you are helping me just as much, if not more. This is something I've wanted to do for a long time and haven't had the courage. It validates me and validates Ian and what we went through. I wish I had this community back in 2005 when we were going through this. This "club" we belong to royally sucks and it sucks in a BIG life changing way. But I would always rather get an email saying "Hey, this happened to me to, here is my story, this just sucks" rather than nothing at all. You guys don't depress me or stress me out and I love how candid you all are and trusting with your stories. It's raw and vulnerable and incredibly exposing  and brave to share with essentially an internet stranger. So please keep the emails coming and I will get back to all of you, my dear internet friends. Thanks guys :-)

Timothy

1 Timothy 6:10
"For the love of money is a root of all kinds of evil."
Doesn't matter how much you twist it, deny it, justify it, ignore it, minimize it, explain it away, hide it.... a love of money can manifest itself in so many ways, not just the obvious ones...

Yes

http://m.wikihow.com/Understand-Someone-With-Chronic-Pain

Blog work

I'm making some aesthetic changes on the blog and I was nominated for another award which I swear I will get around to. I think I have three now that I need to do. I truly appreciate the support, kindness, comments, private emails, and connections I have made through this blog. Thank God for the blog world. I never thought I would say that. Happy Monday.

Pregnancy and Infant Loss Rememberance Day

Kindness

“Be kinder than necessary, for everyone you meet is fighting some kind of battle.” ― T.H. Thompson and John Watson

Matthew

Matthew 11:28-30 says...

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."

Processing, always processing....

I didn't intend for this blog to turn into a RA (Rheumatoid Arthritis), Fibromyalgia, auto immune bitch fest blog but I think that may be the direction it takes. Because I need to keep talking. Maybe something will resonate with someone, maybe I will just come across as an ungrateful whiny mess, who knows. It's my blog and I'm doing it.

My birthday was rock bottom. I've been there before but not with the looming long term crippling diagnosis', financial ruin, and overwhelming parenting guilt x 2. If you haven't suffered with RA, Fibromyalgia, and Lupus at a young age after struggling to build a family, you may not get all of my rambling.

Since my birthday our life has been a series of extreme highs and extreme lows and then back up and then back down (stupid freaking furlough). We received a huge blessing, help in an unexpected place. An amazing couple who I met by chance a year ago and who have helped us before in many ways, who know nothing of this blog btw, have helped us manage one huge financial hurdle which has changed our life. Amazing, heart warming, 1 in a million type of story. That event was followed directly by my husband being deemed an essential government employee unaffected by the furlough (don't get excited), working all week just to find out that the essential employees at his office will not get paid either... there's.just.no.money. And no answers. Will he continue to go to work for free like so many others are doing? YES. He is happy to have his job and will do whatever it takes to keep it. Are we freaking out like so many others at the prospect of a long term furlough? YES. We are but one voice in a sea of many wondering how our bills will get paid and how we will keep food on the table. I am unable to work right now. Am I applying for any and every job I could possibly get on short notice? YES. What an emotional few weeks it has been.

So I met with my rheumatoid doctor to discuss the beginning few weeks with new medications and to talk about...... options. None of which are very appealing. My uncontrolled RA and fibromyalgia have to be regulated before anything else can be addressed and it's turning out that the diagnosis I least feared, RA, is turning out to be the most fearful. Below I will post the statistics I found that are just … shocking to me. I'm 32 and have been struggling with this illness, undiagnosed for at least 10 years. All while suffering through loss after loss, difficult pregnancies, and the joys of parenting after loss with a physical illness….. so keep that in mind when you read them. I was STUNNED. The new medications that I've been hearing about and have been offered to me have costly side effects. It's a gamble.

Treat the RA aggressively like recommended and possibly wind up color blind/or all blind, with raging infections I'm unable to fight off, lung problems, and possibly cancer? Uuummmmmmm, NO THANKS.

Choose no treatment and live with RA’s nasty full blown symptoms, possibly becoming crippled sooner rather than later, and then die early? Uuuummmmmm, NO THANKS.

Try mild drugs which I'm doing now, maybe an anti-seizure med, a prescription anti-inflammatory, and an anti-depressant that will help with pain and swelling a bit but won't really help with the things I want FIXED long term- namely energy/motivation, mobility, controlled moods, apathy demolished, sleeping soundly and unaffected, basically getting MY LIFE BACK. It's finally sinking in that there is no pill to get my life back. And that just fucking sucks. FUCKING SUCKS.

Yea, yea, I know I wasn't guaranteed an easy or pain free life, or to be alive at all.... but this is a particular brand of physical and psychological torture that I can’t fathom (and here I thought watching my son die in my arms and living without him, then bleeding out his brothers and sisters every other year was all that a mere human being could take, I WAS WRONG) a long suffering torture that leaves me horrified, angry, frustrated, fearful, guilty that my sons have to watch their mother deteriorate instead of bask in the joy of their existence, struggling to do the most basic tasks that many take for granted, watching in sorrow as my husband wish for another life, and realizing that the apathy I thought was situational and could be “fixed” may in fact be due to this cursed illness that will never leave me whole... or even a fraction of who I used to be.

I will leave you with the bullet points that stood out to me as the most shocking regarding JUST THE RHEUMATOID ARTHRITIS. Success stories of people living with RA who have an awesome quality of life and the medications they are on would be GREATLY APPRECIATED. Leave an anonymous comment or send me a personal email, however you feel comfortable, share the wealth!

According to the Centers for Disease Control and Prevention (CDC), arthritis and other rheumatic conditions are the leading cause of disability in the U.S. More than 30 percent of adults with doctor-diagnosed arthritis (all types) report a work limitation due to arthritis. According to Johns Hopkins, disability is higher among patients with rheumatoid arthritis, with 60 percent being unable to work 10 years after disease onset.

Medical literature suggests that people with rheumatoid arthritis may live 10-15 years less than their healthy counterparts.

Physical limitations may become disabling. The disease may challenge your emotions. Finances may be stretched by an inability to keep working. With a positive attitude, you can take action and find solutions. (Who the heck wrote that crap and do they have any experience with FINDING SOLUTIONS???????????????????????)

Often, joint damage occurs within the first two years following the onset of rheumatoid arthritis. The possibility of early joint damage makes early diagnosis and treatment essential. It's also important for rheumatoid arthritis patients and their doctors to consider an aggressive approach to treatment rather than a conservative approach.

Yea, I’ll get right on that. Such an easy decision to make….

Faith and Fear

"Faith and fear have the same elements. They both require you to believe something that hasn't happened yet."

Cerclage specifics, cervical stats, and doctor stuff.

Does anyone know why my posts are published as one lump paragraph instead of these nice and neat bullet points that I've spent hours on!!! They are showing up correctly in the box that I type my post, spacing is perfect here but as soon as I publish it smooshes it all together! HELP! I'm going to post this anyway because I've spent so much time on it and I will edit it once I figure out what's wrong. Sorry for the hard and heavy reading :-/ I wanted to post the facts below so that you didn't have to search through my blog for this information. Doctors: The information I was given about cervical lengths and cerclages below, were given to me by my doctors in 2005 and 2010. If anyone finds this information to be incorrect, please let me know. My information and experiences are gathered from high risk doctors who had been doing cerclages for 20 plus years... they were both pioneers with cerclage, and started doing them at a time when it wasn't regularly done and I believe one or both of them learned from the man who first implemented cerclage for IC. They couldn't believe that some doctors take a "wait and see" approach in subsequent pregnancies after a loss due to IC. I didn't even have a definitive diagnosis of IC because of the Beta strep complication (which came first the chicken or the egg)but they didn't care, it had to be done. They were that confident with cerclage, that they couldn't imagine taking a chance on another pregnancy without it- even if the particulars of the previous loss weren't clear, it was better to be safe than sorry. They felt that counting on an emergent cerclage in the second trimester if there was dilation was too risky and they had lost babies that way. Some women go to the extreme and get a TAC, trans abdominal stitch that is permanent. They didn't feel that was necessary and I had to trust their experience and judgment that a preventative would hold. They each had their own way of doing cerclage and they liked certain materials and procedures that may not have been mainstream at the time. No doctor will place a stitch the same. For instance I have never heard of anyone else having the Teflon tape added to the cervix with the stitch to keep it shut. And my doctor for the second cerclage came up with the button to tie the purse string stitch closed and I believe he is the only one that uses that. I thought there was some universal procedure that all doctors use to place a cerclage and that is just not the case. They also have to adjust for each individual's body, situation, and baby. No two stitches will be the same. The differences in technique and materials wasn't something I was expecting. However they were able to explain why they chose certain materials and procedures for my case, why they felt it would be most successful, and they weren't afraid to give their stats. Luckily mine hadn't experienced any losses with a preventative cerclage after all those years, but I think I truly lucked out. Some of you email me with protocols that your doctors follow and frankly I don't know what I would do if I didn't have a choice but to follow advice that I felt was wrong... and there were no other options. Heart breaking. Just do the best you can. Don't be afraid to ask the hard questions and find a more qualified doctor if those answers don't feel right. Some doctors only see one IC case a year or one every few years. This is not something that you want done by a doctor that is inexperienced. Have they had any losses or complications during placement or after, if so how many, what were the circumstances, if there is a problem how do they plan on addressing it, what is their availability, will they offer biweekly scans to check cervical length after cerclage placement even if it's just for your peace of mind, etc. These things are so important in pregnancies after loss or pregnancies with complications. I know that I am the type of person that wants to make doctors feel happy and at ease, I never want to cause trouble... I had to work really hard to change how I interact with these doctors that hold the life of my children in the palm of their hand. I had to learn to really become knowledgeable in all things cerclage and IC, be strong and smart when I advocate for myself, ask repeatedly, write things down, bring someone with you, gather explanations and compare, demand even if necessary, to insure that we would not lose another precious baby. Some doctors are receptive, some are not. I've had both and I just didn't care at that point because I didn't do those things with Ian and he died. And because I deserved the best care and best chance for success and you do too! Ok, on to the info: Normal cervical length for women without IC is 3.5. They like to see the cervix stay at 3.5 cm-5 cm for the entire pregnancy after a preventative cerclage with no funneling or U shape occurring. They stated that some cervical movement would be ok, depending on where your doctor places your cerclage, possibly down to 2.5 cm would be ok with no funneling or U shape but anything lower than that would put the cervix at risk of being torn. I believe they said 1.5 cm and lower would be right up to the stitch and is considered an emergency... immediate bedrest. Again, it all depends on the person and the situation. Cervix's are always moving and changing, sometimes many times a day and different angles with the ultrasound can produce different results so it's important for the doctors to take those checks seriously and don't be afraid to write down your lengths at each scan, no matter how frequently. If there was a change, how fast did it occur, are there any other factors contributing to cervical changes, make sure they check the cervical end where the baby is for any funneling at all, any U shapes, any signs of the membranes going into the cervix, any changes there that are caught early could mean the difference between life and death for your baby. A rushed scan is just not acceptable. 1st cerclage- Four months after we lost Ian, we conceived Nathan. My cervix was not prepared for this so soon and the recommended time frame to place a preventative cerclage- 13 weeks, was pushed forward to 11 weeks. Two preventative Shirodkar stitches (more invasive, it's weaved in and out of the cervix all the way around) were placed high up at 11 weeks gestation. Teflon tape inserted vertically into my cervix to tape it shut. I had no cervix at the time of placement. After pulling and manipulation to gather cervix for the placement, the stitches held my cervix shut for the entire pregnancy at 4-5 cm depending on the ultrasound angle with no funneling or U shape. I was on my feet until the end of the pregnancy, no bedrest needed. I ended up needing a spinal to have them removed at 37 weeks after trying to clip them in the office because the stitches were embedded. They removed all but a small piece that I still have in there to this day. That piece has not affected my dilation and I've had successful and normal vaginal deliveries. I had no problems with conceiving after my cerclages, no damage to the cervix that affected conception or subsequent pregnancies/cerclages. At the removal of the stitches I immediately dilated to 3 cm and it stayed that way until my induction at 39 1/2 weeks. 2nd cerclage- Five years after the above pregnancy/cerclage, we conceived our second son. A preventative McDonald cerclage (less invasive- purse string stitch tying it shut with a button) was placed at 13 weeks because my cervix was 3.5 cm at the time of placement. 3.5 cm is the normal length for a cervix without IC at that gestation. There was no emergency this time, no difficulty with this placement and removal. The doctor commented that he did see the remnants of the previous stitch but that it wouldn't impede this placement. The stitch held the cervical length at 3.5 cm for the entire pregnancy, no funneling or U shape. I was on my feet until the end of that pregnancy, no bed rest needed. Removal was done at 37 weeks in the office with no anesthesia. It was painless. The speculum was placed, the stitch snipped, button and stitch removed, all done in less than five minutes. I immediately dilated to 1 cm and then was induced at 38 weeks due to contractions and dilation to 3 cm. Pain: I've had a lot of women ask about whether or not I felt any pain, pressure, twinges, etc. after placement. I had occasional random sharp twinges here and there, especially when Nathan would move and kick, Sometimes when I bent over suddenly, and definitely more so with the first stitches. I don't know if this makes sense but I was always super aware of feelings in my cervix. I definitely had some odd feelings and some odd pressure towards the end of the pregnancies and I always addressed this with the doctor. I was told these were all completely normal and that I only needed to worry if I saw blood or had contractions that gained in strength, neither of which I had. I know this is a lot to take in and I always write a load all at once. I feel obligated to get it all out there for public consumption because I am an unusual case for many reasons. I've had two separate successful cerclages by two different doctors with the two different stitches. I'm getting lots of great emails with good questions from you all and I thought a refresher post might make it easier to gather the information you need. I LOVE getting emails from you all and while I hate why we are in contact, I always hope I can be of some help. I apologize if there is delay in my response.

Take care everyone :-)

Imagine

I tricked you with my awesome post title didn't I? This isn't going to be uplifting in any way. Sorry. *Imagine the day in your life when you were the MOST tired, exhausted, and aching you've ever been. And you couldn't wait for that day to be over so the next one could be better. *Now imagine that none of your future days would be better, more energetic, more positive. *Imagine that your body failed in the most basic of ways, day in and day out, exhausted, your whole life. *Imagine the disappointment in yourself. Imagine the expectations that you needed to fulfill that you couldn't. *Imagine that you were an especially empathetic, sensitive, and feeling individual. Imagine that you knew the pain you caused others by something that was out of your control. *Imagine your friends and family who needed you to be there for them as they were for you. Brothers, sisters, best friends who needed a NOT tired and supportive friend. Just like you were before. And you couldn't do it. You were too tired. *Imagine children who needed a mother. Maybe a working mother that could bring in money. Or a stay at home mother that could teach them and nurture them. Now imagine that you were too tired. You couldn't work and couldn't be the mom you knew you needed to be. Because you are too fucking tired. Imagine the horror of birthing your SO LOVED AND WANTED children that you worked and toiled for, loss after loss, when you finally got your beloved babies, only to realize that you are too TIRED to properly care for them. Love only goes far, action is what counts. Imagine the guilt and pain of that. *Imagine you need to be the daughter that your parents raised you to be, the daughter in Christ that you know God wants you to be. But you're too fucking tired. Imagine needing to be a good daughter in law and renter, caring for a house, getting it ready to sell and show.... and moving for the 7th time in 10 years. Imagine that. But you're too fucking tired. And it has to be done. But you're too fucking tired. And no one really cares... because it has to get done and your husband is working, so who is going to do it? *Imagine all the hope you put into doctors and medicine, only to be told that there is no medicine, therapy, or cure for your TIREDNESS. There is no pill or treatment. Imagine you've spent over a decade trying different medications and therapies, things no one even knows about other than your husband. But your body doesn't care. You aren't special, there is no magic, no karma, no good deeds you can do to make this different. It will continue and possibly get worse as you get older. You're too tired to exercise and eat right. At this point, you're too tired to even care. *Imagine being told your worst day will repeat until you die. *Now imagine your beloved husband. The person you imagined a happy and full and fulfilled life with. The person you would do ANYTHING FOR. Through thick and thin. Ten years. Waiting for the day when things will get better. Waiting for his wife to return. Waiting with hope and positivity as each negative event beats them down. When will the happiness return? Why can't he fix this, he just wants to fix it and move on. Not understanding why his wife is too tired to love him fully and care for him. Too tired to be happy or even pretend. He thinks this is all his fault. No one can imagine an illness taking someone's love and affection and care away indefinitely. Imagine the day he realizes that it won't get better. That he will have to sacrifice his own happiness, his own well being, his own money and time, for his entire life, while he watches his wife suffer, in pain and guilt, and he can't do ANYTHING about it. You tell me what man can actually give 200% in those circumstances. Keep strong forever. I'm telling you, IT CAN'T BE DONE. Even the most loving, the most character filled man, will crack. Don't tell me otherwise unless you have lived it. *Imagine that the above is your life. And that you are 32 years old with two young boys and very little support because who wants to be with the suffering miserable wench for more than a hot second? What fun is that? Imagine BEING that suffering miserable wench. *Imagine being happy on your 32nd birthday when you wish you were never born. *Imagine that.

And the diagnosis is....

I wish there were only one. I went to my initial appointment with my Rheumatoid doctor last week. She came highly recommended and didn't disappoint. She diagnosed me with Lupus, Rheumatoid Arthritis, and Fibromyalgia. She also says "there is definitely something else going on" and referred me to a neurologist and an ophthalmologist. I can only imagine what the "something else" will be, an alien in my brain perhaps? I hate this shit. I hate being "sick". I hate being negative. I hate who I've become. I hate that other people are tired of "this Melanie". I hate it all. Life has turned out to be a real cluster f*&#. My stupid 32nd birthday is on Wednesday, my husband is out of town for the week for work, and no one seems to want to hang out that evening which I don't blame them because even I DON'T WANT TO BE WITH ME. It still stings though. I'm disappointed in myself, I'm disappointed in my life, I'm disappointed in the people in my life who should be helping me get through this time but instead are burned out with me or whatever. If I hear one more "Chin up, be thankful for what you have, at least you have this or that, it could be worse, look at the other worse tragedies in the world, live in the moment, stop worrying so much" I'm going to SCREAM and mentally punch them in the face. If you can't just support and love me for who I am now, UNCONDITIONALLY, and if you can't accept that I am no longer a person who can help you with your shit right now, then just go away. I've been helping people with their shit my whole life and I've been trying, trying, trying to be who everyone wants me to be. Look where it has gotten me. NOWHERE. I have every right to mope and be pissed for as long as I want. Does it help anything, probably not but it's my damn choice and I'm sorry if I haven't mastered how to be AWESOME POSITIVE MELANIE while my life falls apart. That's all. Happy f-ing Monday.

Still here

I haven't had much to post lately. I'm sorry for being a bad blogger. I FINALLY have an appointment with the rheumatologist in a few days and to say I'm nervous would be a major understatement. So I'm just kind of hanging out until then.... I will post more once I have more concrete information regarding my auto-immune issues. I wanted to thank all of you who have emailed and reached out to me, needing advice or just wanting to connect. I try to email everyone back as fast as possible but some things have fallen through the cracks and I apologize. Please continue leaving comments or emails and I will do my best to answer your questions :-) Happy Fall!

How my wishes have changed....

My oldest calls out, It's 3:33, MAKE A WISH! Every time we do this, I'm immediately transported back to my youth. 

Yes, my oh my how my wishes have changed over the years. And I'm not talking about the actual wishes changing. They were always the same wish- a child. I'm talking about how the wording of a wish has changed over the years. 

This is how it went down starting 10 years ago when I got married, to now. It's all about the specifics now-

* I wish for a baby. 

* I wish for a baby this year.

* I wish for a LIVING baby this year. 

* I wish for a LIVING baby this year, that lives a long time. 

* I wish for a LIVING baby from my husband and I, this year, that lives a long time.

* I wish for a baby from my husband and I, this year, that is born full term after an uncomplicated pregnancy, and lives a long life. 

* I wish for a baby from my husband and I, this year, that is born full term after an uncomplicated pregnancy, that has a happy and healthy long life. 

* I wish for a second baby from my husband and I, that is born full term after an uncomplicated pregnancy, that has a happy and healthy long life, and gets along with his/her brother-then I say really quickly- also that my husband is happy and healthy and lives a long life. (Try getting that all in before the clock ticks 3:34 or before a candle is blown out or a shooting star is too far gone from sight/memory)

I've been granted some of these wishes (so far) except I left out something.... details about ME. I assumed the other things would bring me whatever health and happiness I desired. Which it has for the most part. But if our struggle has taught me anything, it's that I am not exempt from the tragedies of life. I am not special. I do not get a FREE PASS, ever. This has been especially apparent now that I have these scary health issues looming, after everything I have done to get my family over the last 8 years, So now I find myself wishing the following:

* I wish for me and my entire family to live long, happy, healthy, prosperous lives and that we get along and love each other for our entire lives. In fact, I wish that for everyone. And give babies to all the women who want one, unless they do drugs or will be unfit mothers....

I USUALLY stop there, and thank my lucky stars that I'm not actually in charge of the mess that is this world.

That's not too much to ask the wish fairy, is it? Has anyone else's wish wording changed over the years? Is it ridiculous to do that? I tried to stop but just couldn't, I swear ;-)

Positive for Rheumatoid factor and low B-12

I will write more another time with all the details but I promised I would always keep my medical information up to date for those of you who may need the information for your own journey. I just tested positive for Rheumatoid factor and low B-12. I'm certain all of my reproductive issues and other random health issues over the last 20 years are somehow all connected to this and hopefully I will get a diagnosis and treatment soon to help me feel better. I will post more another time.

Feelings about your miscarriages/loss after you have living children.

That was a question I was recently asked. I feel weird writing about this and admitting certain things because I don't know if my reaction is the "norm" and I certainly don't want to insult anyone or make the general public think this is how everyone responds. So let's preface this with, in MY experience, the following happened:

I have two living children and I had experienced loss before both of their conceptions.  Prior to Nathan, we lost Ian at 22 weeks.  Six months prior to conceiving Caleb we had our first early miscarriage but the most devastating of my early miscarriages both physically and emotionally- I bled out and almost died during that one, I REALLY wanted that baby, thought it was my last chance to give my son a sibling, was FLOORED that I was now experiencing a first trimester miscarriage after everything we had been through with the later loss, I quit my job because I couldn't handle anything. That low was almost as low as when we lost Ian at 22 weeks.

With Nathan I was never able to wrap my head around "Well, if you hadn't lost Ian, you wouldn't have had Nathan." In fact, I didn't like to think about it. It wasn't a comforting thought. There was never and will never be any sort of feelings that started with "well, at least" or "if this hadn't happened" or "we should just be thankful"..... I think the main reason is because this wasn't my body passing a chromosomally abnormal baby. This was my body being defective and killing my perfect child.

As for the early miscarriage prior to Caleb. I look back on that and can't BELIEVE what a volatile reaction I had to that. NOW, I can actually say that I'm glad that miscarriage happened so I could have my Caleb. I can't imagine if that baby had lived and we didn't have Caleb. I'm so thankful that things worked out how they did and not how I wanted. Is it made easier by the fact that it was likely an abnormal "fetal pole" and my body was doing the "right thing" that time? It didn't feel like that at the time, that's for sure. But yes, as I sit here now, I can honestly say that I'm glad I suffered that miscarriage. I could never imagine who that baby could have been. I don't have any regrets other than how I handled it at the time. Of course we wish we could see into the future because if I could, then I would have seen my sweetheart Caleb and breezed through that miscarriage knowing who was coming next! But for some reason I was supposed to experience it the way I did.

Even though we were done building our family I suffered a few more early miscarriages after Caleb (I conceived these on the birth control pill). The first one was a real blow because I was farther along when the baby died- 7.5 weeks, we had seen the heartbeat a few times, and were dealing well with the idea of making our family of 4 into a family of 5. But still, the grief from that miscarriage didn't come near to the grief of the one before Caleb.

So will the pain of loss get easier or go away after children.... will the trials and tribulations of the  "journey" be a distant memory that no longer matters after children..... It depends on the person and the situation. After living children, the trials and tribulations turned from despairing dark horrors, into milestones that made me appreciate these children more. They became positive in a way. All but losing Ian and the circumstances surrounding that. Those will forever be etched in our hearts and minds forever. The pain is no longer a constant sharp knifing to my body and heart like it was 8 years ago and for years after but it is definitely there always, and always will be. Like the dull throbbing of a headache about to get bad, occasionally I feel the sharpness, but it's few and far between.

A surprising thing that has happened as my living children grow to be older, is that Ian's loss in particular has allowed some joy, in the sense that our children love to hear about their older brother and like to think of him in heaven watching over them. That was unexpected joy for sure, but joy nonetheless. How they process his death and "remember him" is so abstract and sheds a new kind of light and understanding on it for me and my husband. And it's nice. It's a nice change. They weren't there for the horrors of it so their perception is so..... light, and gentle, and loving, and kind, and hopeful, and sweet, and heart warming. Those are not things that I ever thought would be brought to the experience of Ian.

So that, my friends, is the answer to the question the person asked in more depth and maybe you will feel free to share your feelings about it :-)

One of the things I did to make it through....

Going through a subsequent pregnancy with a cerclage after a prior second trimester loss is a special kind of hell. Not one second of my pregnancies with Nathan and Caleb were carefree and joyful. I felt like I held my breath the whole time and begged God everyday on my knees to please let me have this one.
So I was newly pregnant with Nathan (didn't know he was Nathan yet), just had the cerclage placed the month prior, and I was having a really rough day at work at the psych hospital so I sat down and cried. Felt my blood pressure was up and he was kicking up a storm and I needed to do something to acknowledge him, bond with him, and calm me down. Poetry and Powerpoints are NOT my strong points so keep that in mind. It's what I felt compelled to do. Nathan LOVES it when I read it to him now :-)

Everyone, absolutely everyone on this planet, needs to read this book.

I strongly recommend everyone read "Proof of Heaven-A Neurosurgeon's Journey into the Afterlife" by Eben Alexander, M.D. 
This isn't your run of the mill near death experience, this is the REAL DEAL. 

http://www.thedailybeast.com/newsweek/2012/10/07/proof-of-heaven-a-doctor-s-experience-with-the-afterlife.html

I'd love to hear your feedback on it after you read it! Thanks guys. Love you all.

Spam-Captcha's going back on

I've gotten two spam comments just this morning so I hate to do this but I'm moderating comments again and putting the captcha back on. Sorry guys. How freaking obnoxious.

Just to clarify....

I've gotten a lot of private feedback from friends and family about my post regarding change, and I assure you, if you are concerned about that post being about you, it's NOT. It was more of a preaching to the choir thing and just and awareness, more than a "I'm going to beat you over the head with what you can't possibly understand".  As I'm rereading it today I'm seeing that it had an angry vibe and a "my pain is worse than yours" and I SO didn't mean it that way. I think reading other blogs about people going through it right now is why I got so feisty about it. So all of you awesome folks in my life, please don't feel like I'm singling anyone out or saying that our relationships how they are now aren't enough. I love you all :-)

HTML drama, bear with me please

I've been trying to get these ads on here correctly and in the process, totally F-ed up my entire scheme so bear with me. I don't know if I will be able to get it back to how it was before. ARGGGGGGGHHHH!!

Another lovely drawing of Ian's name

Thank you so much Shannon. This means so much to us. We LOVE to see his name and know that he is not forgotten and that others care enough to do these sweet things and read his story. XOXO

Off topic- need Etsy advice

Do any of you have any experience with Etsy, particularly with selling. What sells well, what is there a demand for, is it an easy way to sell homemade things? Basically any experiences you have, advice, information would be great. I've already signed up and read their information but I haven't "opened a store". I guess I'm nervous to get started without hearing any "real people" advice. So please help me if you can! Have a great day!

How we change during continual trauma and the fallout....

Who are we at any given point of our reproductive journey? I'd like to meet the person that says that they are the exact same person they were when they started this hellacious "journey". I use "journey" loosely because that implies that we were willing participants or at least reluctantly going along on this journey. I don't know about you but I can't even count the amount of times I felt like a Giant was whipping me from one side to the other, smashing me into the dirt and dragging me behind him by my hair until it was no longer fun and then he left me there to die. I have a million analogies but those of you have lived it need no analogies. You understand too damn well what I'm talking about.

 

So that brings me to the topic for this post. Change. I've been reading a lot of blogs about how their relationships are changing with friends and family because they aren't the same and no one understands what they are going through. These wonderful and hurting women are holding the guilt and pain and responsibility for tense/failing relationships, isolating when it's strictly a matter of survival, inability to join in others joy and celebrations surrounding pregnancy/new babies. It's all put on us. IT IS SO WRONG.  These kind and courageous women try to stay "normal" for their friends/family/work/society and just suck up the fact that they are going through one of the most horrific experiences a couple can experience in this life. Because God forbid we offend someone or don't live up to their expectations for how we should be dealing with our shit storm. For me, I had up until just recently, friends and family wanting the "Old Melanie" back. I was made to feel bad for being WHO I AM NOW. The OLD MELANIE IS DEAD.

 

We are changed forever aren't we. That seems to be a given. We are not the same people we were. What has been most shocking to me on the "other side" of the family completion spectrum, is that even with cutting out poisonous or unfruitful relationships over the years, now that we have attained our goals and have what we hoped/prayed/strived/fought for..... PEOPLE NOW EXPECT THAT REACHING OUR GOALS MEANS WE CAN GO BACK TO THE WAY IT WAS. Ok so now let's just pretend none of this ever happened, erase the last ten years and move on. That's what friends and family think. Yes, I'm sure they are tired of hearing about our issues/drama and they can't wait to move on and get their loved ones back. I'm berated for still struggling with depression, for having difficulty not being able to keep up with the house work, for not being able to go back to work yet, for still having anger and anxiety issues, for still not having a stable spiritual relationship, for being on so many medications still......  So for those of you who haven't had the pleasure of living our life, let me clarify for you, ready?

 

THE OLD MELANIE AND JOSH ARE DEAD, FOREVER, NEVER TO RETURN. GET THE FUCK OVER IT AND SUPPORT US AS WHO WE ARE NOW. ENJOY US AND SPEND TIME WITH US AS WHO WE ARE NOW. LOSE YOUR DAMN EXPECTATIONS FOR US, FORGET THE PEOPLE YOU WANT US TO BE. And lastly, WE WILL CONTINUE TO CHANGE. GASP!

 

Let me try and give you a little watered down version of "THE CHANGES". 

 

Let me preface this by saying that not only was I changing with every negative HPT, and every loss, and every painful procedure, and every diagnosis.... but there was someone else who was changing in his own way and was just as affected and involved. My dearest hubby. My oh my, I couldn't even figure out who I was at any particular moment, how was I supposed to maintain a relationship with a spouse who was doing the same. AHHHHHHHHHHHH.  You'll see later how badly that bit  me in the ass. Not like I could have done anything differently or better than I did at the time. I did what I could.

 

I wish I was only changed ONCE during this whole process but NO, oh no, it's much more horrible and complicated..... Let's start with completely naive Melanie. Naive Melanie wasn't completely dumb. She was college educated in psychology and worked difficult jobs that taught her that very bad things happen to many. However she thought she was exempt from those particular horrors and she was just the one that was designated to "help" those poor souls. She knew she may have difficulty conceiving due to many years diagnosed with PCOS but surely it would just be a minor delay, nothing serious. And it really wasn't in the grand scheme of things. Took a few years, major diet changes, and she finally got pregnant. Naive Melanie was ECSTATIC and nervous of course. When she found out she was having the son she always wanted, she had never been happier in her whole entire life. That lasted one week. Naive Melanie disappeared forever on April 14th 2005, when she delivered her first son at 22 weeks and he died in her arms.

 

Melanie 1 replaced Naive Melanie immediately, put up some walls, and violently went through the stages of grief many times over, self medicated, self hated, felt hate towards others, jealous, bitter, angry, guilty, and her whole world as she'd known it was gone forever. The God she thought she knew, the spirituality she was exploring, all dead to her. She had been suddenly, shockingly, and horrendously wounded and became isolated, vascillating between apathy and rage/pure hate, defensive, self harming and suicidal. Melanie 1 was barely able to continue working at a high stress job. Melanie 1 and Josh had some talks and made some decisions. They both felt that trying again immediately for another child would help them. They felt they needed a goal, something to focus on, perhaps to help the grief and pain. They got pregnant with Nathan almost immediately.

 

It was then that Melanie 1 left and was replaced by Melanie 2.  Melanie 2 was determined, hopeful but cautious, wanted as much control as possible, took excellent care of her body, REFUSED TO THINK about anything other than this baby (who she knew was a boy) being born full term, healthy, and in her arms in 9 months. She was more positive yet anxious however she started delving into prayer and her spirituality again. Melanie 2 was strong willed, advocated for proper care, became an expert on her reproductive issues and treatments. They went on to have a precarious pregnancy with Nathan-harrowing cerlcage placement, worst case scenario, and then FEAR every second of every day, the agony of carrying a baby and wondering every.single.day if your beloved baby was alive or dead in your body. But Melanie 2 was still strong and determined, pushing away the feelings of fear, inadequacy, and grief over Ian.  Melanie 2 made it full term with her rainbow baby Nathan.

 

Melanie 3 emerged at his birth, full of joy and happiness and excitment. Melanie 3 was relieved and loving and caring and kind. Melanie 3 and Josh brought their new miracle home to their new home and couldn't wait to start a wonderful life. Melanie 3 didn't last very long.

 

She was completely side swiped by Melanie 4, the post partum grieving bitch. Melanie 4 required therapy and medications and was in shock that after all she had been through, why couldn't she just enjoy her miracle, her rainbow baby, and move on with a wonderful life. Melanie 4 suffered a deep chronic depression which was a combination of delayed grieving for Ian and terrible post partum depression. What was wrong with her, everyone asked, including her. Melanie 4 hung around for a LONG time and fucked all kinds of shit up, spiritually, financially, maritally-nothing major. After a major last minute decision to sell their house and move back to the state they were from, Melanie 4 was positive at first, happy and work started looking up. She got a raise and a promotion. She thought this would be a great time to start trying for another baby. Josh was totally onboard. They enjoyed the fall together, were excited about the future plans. Melanie 4 managed to pull herself out of the pits of despair. Melanie 4 and Josh desperately wanted Nathan to have a sibling, it was something they felt very strongly about and were willing to go through the fear and unknown again...... they got pregnant immediately aaaaaannnnndd cue the most horrendous unexplained first trimester miscarriage, Melanie 4 tried hard to deal with it well, she was in shock. Waited 12 weeks for her body to miscarry naturally, only to bleed out in her sister's bathroom on Jan. 1 2010, she almost died, what the hell. There was no reason for that miscarriage. Melanie 4 tried but after the D & C in another state over the holiday and an unsympathetic Supervisor that busted her balls over the phone, Melanie 4 called it quits.

 

Melanie 5 arrived in a full and horrifying mental breakdown. Melanie 5 became completely apathetic and that was all. Sad too. She quit work and gave them a piece of her mind and then laid around in a delusional fog, putting all responsibility and finances on Josh, who has never had to do this and was shell shocked himself. Melanie 5 DIDN'T GIVE A FUCK. About anyone. Melanie 5 was gone. Barely was able to take care of Nathan. Isolated completely and didn't care.  Melanie 5 was completely disconnected from Josh who was working two hard jobs to make ends meet because Melanie 5 was completely and utterly unavailable for anything. She went on and off meds, and then turned into a wreckless uncaring wench that enjoyed drinking and hurting others just to feel SOMETHING. Apathy with the meds, mania while off of them and self medicating....things were the worst they've ever been. Melanie 5 stayed the longest and created the most havoc. Melanie 5 made a piss poor attempt at taking a new job but got fired after only three weeks. Melanie 5 didn't even care that much. She went on her medication and stayed on it, was less miserable, got a puppy, moved to another house and in the process Melanie 5 and Josh decided they would try one.more.time.

 

Melanie 5 left the morning that Melanie 6 found out she was pregnant with Caleb. Melanie 6 knew she was pregnant long before the positive test and she knew he was hers for the long haul. Faced the same stressful pregnancy issues, easier cerclage, but she was happy during this pregnancy even worked a bit. Caleb was born full term and healthy. Melanie 6 was finally truly HAPPY and joyful! She was an improvement on the other Melanie's. Melanie 6 wasn't working and stayed home with him and nurtured him. She thought, I could get used to this. No post partum this time either. She gave him her all, everything she had and SHE LOVED IT. But there was always something in the back of her mind bothering her, like when you forget something and you just can't place what it was........ Then Melanie 6 remembered....  HER MARRIAGE!  After Caleb was born, Melanie 6 was so thrilled to be feeling happy and joyful after all those years feeling depressed, sad, and terrible. She was so thrilled that she was able to stay home with him and care for the completion of their family in peace and happiness. She was so focused on everything else, that she COMPLETELY and inadvertenly threw her husband to the wayside, ignored his needs without even realizing how terrible their marriage was. Melanie 6 really wanted to pretend that everything was normal and happy now that she had their completed family. Except she spent who knows how many years neglecting her marriage and ignoring her husband's stress and pain and fear. Things went unresolved and Josh was the type to bottle it up instead of upset her with his needs and worries. So there they were, with everything they had worked so hard for, finally, trying to just start from there new and fresh, yet they were completely disconnected and their marriage was about to end. It happens. It happens just like that. Melanie (all of them) and Josh are the souliest of soulmates. And if they could be derailed.... anyone can, frightening! The details about the "almost divorce" I won't go into, but it was bad, the things said and done were very uncharacteristic of us but who the hell knew WHO WE WERE ANYMORE. I didn't keep track of Josh's changes 1-6, like I did mine. I assumed he was fine and just kept it all together and could pick up the slack and not need the support right now. There was a lot of hurt, years of unresolved and undiscussed issues. 

 

That is when Melanie 7 arrived, yes, a different Melanie, a major change happened even after we had finished our family, who would have thought? I am Melanie 7 and every day is a struggle. I'm sure there will be more "Melanie's" throughout my life. Sometimes having your happy ending, isn't what you expected and the changes you still go through are confusing and frightening. I decided to focus on my marriage and my kids right now. I like to be by myself with my family right now, isolated, even minimal family contact. I tried, sometimes painfully to maintain close friendships with great old friends as I went through all these different changes and I didn't realize how taxing it was on me. After a certain point, even my best friends don't want to hear it anymore. They don't know what else to say or do. They don't UNDERSTAND, that's the problem. So where do you go from there? For me, I had to cut them off. Only the people that love me unconditionally and don't passively aggressively make me feel guilty for not being able to "give" as much to their relationships are allowed with my family. Only the people that have NO EXPECTATIONS and NO OPINIONS for who I am now, what I'm doing, how I'm doing, you get the picture. Because that's how I have to do it for us right now, even after we accomplished our goal and thought life would be much easier now. No each reproductive struggle we endure scars us, some deeper than others, some take longer to heal, but the skin will never be the same. We will never be the same, and that's ok. I'm not who I thought I would be right now. I'm living up to whatever potential meter I had for myself. I'm doing what I'm doing, and that's all I can do right now. Other people can take their judgements/expectations/advice and shove it. Most of them have NO EARTHLY IDEA, not even an iota, of what we've been through. And that causes such a huge disconnect even in the best friendships I've noticed. I know a lot of you feel guilty and sad when you have to do this but I can honestly say at this point, I don't feel those things. It's survival. I don't know what the nature of my friendships will look like in the future. I haven't even begun to explore that because like I said, I'm focusing on the us right now.

 

And as a last message here.... If I could go back and do one thing over, it would be this- I would cling to my husband (which I did in the beginning during the immediate traumas) but I would cling to him ALL THE TIME, we would cling during the fear, the unknown, the confusion, the death, the opposite moods, the pain, the anger, the hurt, the worry, the anxiety, the conflicts of opinion and feeling, we would cling during the down times when life was blah and there was no immedate crisis but we were just unhappy and blah, even then. Because I look back on all of the time we wasted emotionally and even physically separated during those times when clinging would have greatly benefitted us and gotten us through this stronger as individuals and as a couple. Clinging in fear and worry and distress and the unknown is an ODD concept to think about, but I would have done it, because the alternative did not work out for us and almost ruined us. I LOVE reading the blogs of women who are continually downtrodden (I don't love that part) but that say "This has made me and my partner stronger, and for that I'm grateful."

 

 

Ask me anything!

I haven't been blogging of late and I wanted to start back with an "ask me anything" section. If you have any questions or comments about any issue related to this blog or something you want me to elaborate on, doesn't matter how personal, I will answer truthfully. Ask away!! I look forward to hearing from you.

A different view of Mother's Day and some things I did during difficult pregnancies.

* If you don't want to read about the pregnancy stuff, then scroll to the last paragraph about Mother's Day. It's good!

I've never been the cutesy crafty type of person. I'm very much a tomboy. But after losing Ian and being blessed with Nathan so soon after, I knew that bonding would be difficult due to the fear and anxiety surrounding his precarious pregnancy. I knew that there were specific things I needed to do in order to ease my mind and connect me with my baby. Nothing overboard. I'm not superstitious and never entertained the idea that I was jinxing the pregnancy by doing these things although I understand others feel very differently and wouldn't get any benefit from the things I did. I just thought I would throw these out there. I will do it in list form:

* I wrote poems to him while pregnant, sweet, deep, and meaningful and I would read them to him often. They were positive and full of peace and love and hope.

* I slept with a medium stuffed bear who was pregnant and had a dress on that said "Momma bear" every.single.night. I'm not one to do something like that but I felt comforted and it put me in the right mindset to keep it together and do what I could to get him hear safely. As my belly grew, Nathan would roll towards momma bear and I felt like I had a little extra help, a little extra support, a little extra something special for the both of us, silly as that sounds.

* I would speak to Nathan CONSTANTLY. I would tell him everything. How I was feeling, good, bad, and ugly. I would tell him constantly how much I loved him and that I would do everything in my power to get him here safely.

* I would speak about things we would specifically do when he was born and as a child, in detail. Fun things, loving things. 

* I put his name everywhere. It was SO comforting to me. I found a baby license plate and a key chain with his name (I carried the key chain with me everywhere), a small painting with his name, it was on my desktop wallpaper, and one of those "name meaning" small posters, framed it and put it in his nursery. I didn't do much in the nursery, but the name thing meant so much to me I had to put it up. It made me feel positive, that he was present, which he was, and that eased SOME of my worry. It was definitely good having those things around for those times when the fear and anxiety were overtaking me and my goals weren't clear but instead intertwined with the thorns of doubt, anger, fear, jealousy, and grief. It helped redirect my mind and put things into perspective. I also spoke to others using his name instead of "the baby".

* I talked to Nathan during my pregnancy about his big brother Ian, what happened, how he will always be with us, and I spoke about him often and I realized after awhile that instead of speaking about Ian with the usual sadness and grief.... when I shared with Nathan, it became something else. A story, our story, and our family's story was continuing and it was my job to keep it all connected and real. That eased the pain of Ian's death and helped me bond with Nathan and start imagining what life would be like with a rainbow baby and an older brother for him to bond with.

* I sang to Nathan and rubbed my belly during quiet times. I figured out what body part was what and would massage them through my tight huge belly. Sometimes I used a lotion or candle nearby that was calming and one that I would use for years to come. I would inhale the scents while humming, hoping he could experience it even just a bit. I knew deep down that I may lose him, that was never far from my mind, so I figured I would make our short time together as special and sensory as possible. 

* I baked cookies with him, explained each step, tasted the batter, he felt the warm of the oven as I leaned my belly on it while it preheated. We tasted the final product together. 

* We had a routine (I did these things with my other son years later as well) but my routine with Nathan was a morning orange juice and breakfast biscuit from Hardees with some Michael W. Smith and Marc Shultz in the background. Every morning. And he responded, every morning. That routine was so special to me, one of my favorite memories. 

Nathan loves to hear these stories of what I did while pregnant with him. He fully understands the precarious nature of the pregnancy and that he wouldn't be alive with medical intervention. It's something we share now. And God forbid if he didn't make it, I would have those moments so treasured deep in my heart.....

Yes, a pregnancy with incompetent cervix after a second trimester loss and battling infertility is no doubt, a horrendous and terrifying task. I had the lowest of the low moments one could have in those situations. But peppering in the above little moments and routines and sharing with him DEFINITELY made it as bearable  as a situation like that could be. I am not the same Melanie. These things have changed me forever in many ways, good and bad. But those little memories, looking back now that we are finished with our family, those little memories are HUGE to me now and oh so special. 

Happy Mother's Day to all of you who are celebrating the day empty handed due to a loss or because your child has yet to make it to your arms. You are just as much a mother as the woman who has 12 kids tagging along after her. You are a mother in your heart, you go through the pain of treatments and negatives, but you are already a mother putting forth more as a mother to bring your children here, than so many others. Babyloss moms, you have endured the most tragic and important job a mother could ever do for her child. Sending them off from this life with love and honor and respect. Being strong and keeping their memory alive. Doing this while grieving and heartbroken in a society who minimizes the greatest effort a mother could possibly do.... letting go. It's a shame that Mother's Day is the way it is, alienating and separating women, rewarding some, degrading and ignoring others due to things they have no control over. If anything, Mother's Day should lift up those who are Mother's in their heart but not in their hands because ultimately, the mother's getting all the praise and fluff HAVE their greatest gift already, their children. And now that I have experienced Mother's Days as an infertile, a baby loss momma, and as a mother of living children, I can say that the difficulties of raising children-the exhaustion, the sacrifices, the worry, etc. is NOTHING compared to the lifelong grief I carry for the child who cannot be with me. Happy Mother's Day to you all. XOXO

From my dear friend Becca

Thank you dear friend for doing this for us. I LOVE IT. Thank you for remembering and honoring Ian in this way :-)

From my dear brother

Thank you dear brother for making this beautiful rememberance. You have no idea how much this means to me. Amazing.

Something you can do for me.

Another blogger that I follow has given her friends/family/readers a few opportunities to do something for her on this upcoming Mother's Day that shows her that her baby will not be forgotten.

One activity in particular was very touching and I wondered if anyone would be interested in doing this for us.

On Mother's Day, I was wondering if you could take a picture of Ian's name done by you perhaps with scattegory letters or baby blocks or written on a note or using magazine clippings, anything unique and creative that you can do with his name and send it to my email amorecappa@gmail.com.

I don't want Ian to be forgotten and Mother's Day is always bittersweet for me.  It would be wonderful to receive these on Mother's Day, showing us that Ian has touched your life in some way.

Please don't feel obligated to do this. Do this only if you are comfortable doing it, have the time, and if you feel compelled to do so.

Thank you all for continuing to read. XOXO

"A pair of shoes"

“A Pair of Shoes”

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.

Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.

I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.

To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try to walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.

No woman deserves to wear these shoes.

Yet, because of these shoes I am a stronger woman.

These shoes have given me the strength to face anything.

They have made me who I am.

I will forever walk in the shoes of a woman who has lost a child.

~~Author unknown~~