Grieving

[A's Mommy]

Hi friends....

I am just grieving. I should not be complaining because I am blessed with a beautiful daughter. However, it seems like every single woman around me, in my town, at my church, on Facebook, is just bursting over with joy about a new pregnancy. I never imagined being struck with such an illness as PNE in my entire life. These women can have sex at their leisure, sit, go on dates, run after their kids, ride bikes, go to amusement parks, exercise....

If I sound like complaining, I'm not. I'm grieving.

I said before and I'll say it again I know God promised me I'd be completely healed. When everything in the world seems to go against that promise, I have to hold onto it, or else I will give up, and giving up with PNE is not an option.

You know how you "imagine" your life... I'll be married by 25, have two kids by 30, a boy and girl, go on family vacations, have big turkey dinners, wear matching pajamas at Christmas... when I am knocked down by this illness, I am overcome with grief.

So I ask you, and this is not meant to be a thread that brings anyone down, but to bring us closer as we travel down this road of suffering together, what do you grieve about?

A's Mommy

[Emily B]

Dear A's Mommy,

It's totally natural to grieve. With PN, we grieve loss. We've lost who we used to be in the past. We've lost who we thought we would be in the future. Failed expectations are very painful.

We have to go through the grieving process to get to a place of acceptance. By acceptance, I don't mean accepting that we have PN and giving up hope of ever getting better. What I mean is accepting that for now, in this moment, we live a life with pain and limitation.

Even while grieving, we can re-focus on the things we can still do, even with pain. I can still drive short distances. I can still talk on the phone with people I love. I can write letters and send packages. On a good day, I can still bake. I can stil hug people. I can still type this message.

I never got to have any children because of PN. That was a huge grieving process for me. I still re-visit that grief on some days. But I do have nieces and nephews that I adore and they love me back. Even with PN, my life is amazingly filled with love.

Someone once gave me a great piece of advice. Give yourself permission to grieve. If you had a good friend that was going through what you are, you would be compassionate, loving, and supportive. Please treat yourself with that same love and gentleness you would toward your friend.

My heart is with you,

Emily B.

[HerMajesty]

You know how you "imagine" your life... I'll be married by 25, have two kids by 30, a boy and girl, go on family vacations, have big turkey dinners, wear matching pajamas at Christmas... when I am knocked down by this illness, I am overcome with grief.

I remember the period of my life, in early adulthood, when I went through paroxysms of grief. I was abused as a child and just about the time the physical abuse in the house let up I was hit by three years of excruciating pain from interstitial cystitis, so basically I thought of childhood as an 18 year sentence for a crime I did not commit. When I completed that sentence I was all about making my life right through control. Everything was going to go right because now it was in MY hands and was going to go according to MY plan, and my husband existed to play his assigned role in MY life, etc, etc.

Of course God was not going to allow me to stray down that path and so every path of my choosing was obstructed with a level of sabotage that only God can bring on. I cried, I screamed, I threw tantrums and threw objects, but nothing was going to go my way.

Finally bit by bit I learned the value of submission.

This happened long before PN, which is why I think I really have not grieved over the PN. I feel like I gave God the steering wheel a long time ago and he has just turned the wheel a bit and we are headed somewhere, albiet it seems we have been passing through that smelly section of the New Jersey Turnpike.

It is a great thing to go through that grieving over the loss of the life you had planned. Because when you get through with that grief and finally say goodbye to your plan, there is nothing left but God's plan. And God's plan is much, much better. Wait and see.

[Faith]

I understand your grieving. Anyone with a chronic illness continues to grieve as long as the illness exists although I do think it becomes easier with time and especially if you find purpose in your suffering.

I have been encouraged lately by a verse in Isaiah where God is refining Israel for His glory. "See, I have refined you, though not as silver, I have tested you in the furnace of affliction. For my own sake, for my own sake, I do this." God created us for His glory and whatever exalts God's glory also works for our ultimate good. Our suffering is preparing us for eternal life in heaven. And in reality of eternity this suffering (even if it lasts our whole life) is very temporal. We may not be able to do the things we once could, but that's ok. We are still living God's plan for our life and now we may have to find a new way to serve God despite our suffering. My husband and I thought God's plan for our life was to serve as missionaries overseas again. I grieve this. But that is not possible right now. Maybe one day, but until then I have to serve God where I am. Even if it's from my house. Encouraing others, praying for others, etc. God is santifiying us and buidling our character to glorify Him.

I also grieve the most likely inability to have more than one child. I felt like I am letting my daughter down by not being able to provide a sibling for her. But I have to trust that God's plan is better than my plan. If He deems it best, we will have another child. It's really hard right now because I am in the same stage of life as you. Everyone around me is having more kids (and I can't hardly take care of 1)! I get jealous. I wanted to have a big family. One thing I think about is that the next 5 years or so will be hard. I will see a lot of my friends have multiple kids, but in time that stage of life will be finished and it won't be so "in my face". Then I will move on to the next phase....dance classes, school, soccer, birthday parties, sleep overs, church activities, etc. And hopefully by then we'll be feeling better. And maybe good enough to adopt a child, if we can't have one physically! There are so many kids around the world who need a home and what better way to show God's love and adopt. He adopted us and called us His child!

When I really start to grieve over all the things I've "lost" I try to remember that all these blessings in life (health, family, possessions, abilities, etc) are just that blessings. We've done nothing to deserve them. They are a gift from our creator. "Will waht is molded say to is molder,'Why have you made me like this?' Has the potter no right over the clay?" (Romans 9:20-21a) We could have been sick from birth, but we were given several years of good health. We could have gotten PN before we got married or had a child, but we were blessed to have these precious gifts. I have to just mediate on these truths and try to enjoy each day even if I'm in pain because we aren't promised tommorrow.

I am praying for you AM!

[Amanda]

HM

We all have lived through many years of wondering what If etc.
I too have grieved of the many opportunities that I have missed, like my daughters graduation parties, and other celebrations....and many tears have flowed as I realised i have not been fit enough to attend....it is a hard cross to bear. To this day I still wish that life had dealt me a different cross to bear as I have lost soo much; a marriage, my daughters and many friends with whom I shared many happy moments; however now I have calm, i have friends who accept me for whom I am now and I live my life as best as I can on the day....on the days I cannot function normally then i rest and remind myself of those happier times.
We have to look forward and not look to the past and what we have lost.....we have gained so much and so many friends because we have PN and a new family who understand what we are going through.

I recently visited a casualty dept with a friend who hurt their achilles tendon, and was surprised that noone in that dept had heard of the pudendal Nerve let alone had experienced having a Stimulator etc....it was a learning curve for them and also a wakening experience for me that I need to look after my self to protect and allow me to live as normal a life as I can.

[Violet M]

So I ask you, and this is not meant to be a thread that brings anyone down, but to bring us closer as we travel down this road of suffering together, what do you grieve about?

I used to grieve for myself when I had PN but now I grieve for the rest of you who are still suffering. I pray for all of you and hope you will find healing and the strength to get through the PNE journey. Someday, you will all be healed and all sorrow will be gone but until then, please stay strong and remember there is a reason you have this illness.......and I think someday you will know why.

Hugs,

Violet