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Jun 12, 2010

"There's a possibility, All that I had was all I'm gonna get" ~Possibility - Lykke Li~

Hi all,

I don't think I have gotten around to blogging about the results of my medical trip to Brisbane yet. So here goes.

Good news first: Crohns appears to be in borderline remission. Whilst that is fantastic, they have upped my meds to keep it that way. My recent gut problems seem to be a case of IBS (Irritable Bowel Syndrome), a much milder bowel problem.  Of course, this now means I have 2 bowel problems at once which is frustrating to say the least.

I also had a full body scan done just before I went down to Brisbane to try and locate the source of the back/knee problems. This found sacroiliitis in my back, and mild arthritis in my knees.  So, at the age of 22, I have arthritis.

Arthritis (in a number of forms) is a very familiar thing in my family. My mother, maternal grandmother and maternal great grandmother all had it. So I had expected to come at some stage, but not for at least another 10 to 15 years (which is when my mother got it). I should really stop assuming!!

Growing up, I saw the very real impact the disease had on my mother, and thus on the rest of the family. I was very young when she was diagnosed, but can still clearly remember helping look after my little brothers, and helping my mother actually walk and get around. None of this added responsibility was in any way my Mum's fault. She was diagnosed only a few years after she finished having children. She didn't plan to get so sick when we were so young.

That being said, I wonder what would she have chosen if she knew that she would get so sick when her children were so young (feel free to jump in here, Mum)? Would she have chosen to still have children? And if so, would she have chosen to have 3 in 3 years?

Justin and I desperately want children: no doubt about it. One of the many reasons I wanted to have children in my early 20's was to ensure that they would be older then I was, should I get arthritis. I wanted to be prepared for the possibility. But this possibility? I was not prepared for this possibility. I didn't even want to think about this possibility.

The sacroiliitis would most likely deteriorate with any pregnancy I would have: the fact we know about it now means that hopefully, it will be able to managed. The same goes for the arthritis.

That being said, do I want to be doped up on various painkillers and medications for my child/ren's pregnancy/life? Do I want my children to experience life with a sick/incapacitated mother? That is of course, if I ever manage to get pregnant in the first place. And if my crohns stays in remission. And if the arthritis/sacroiliitis progress the way I have been told.

There are a lot of "if's". A lot of questions. A lot of doubts, about something that I always thought I had neatly sewn up in a little box of certainty and careful planning. I wanted a child/ren with every fiber of my being. But now?

Now, it has dimmed just a little. I am being thankful for the fact we hadn't begun medical interventions yet. However, the urge, the desire lingers still, leading me to ask, "where to from here".

Here. The place I never wanted to be.

I am sure I will work it out. But it doesn't make the moment any easier.

I never knew until that moment how bad it could hurt to lose something you never really had. 
~ The Wonder Years ~



shadowspring said...

You are a brave woman, and I am so sorry to hear of yet more hardships to overcome. You don't deserve it, that's for sure.

I wish you all the best: that you wring as much joy and accomplishment and happiness that can possibly be found out of each day. I hope that you find peace- the kind of peace the mystics write about- peace in your heart/mind that allows you to transcend all this suffering.

And lots of friends, laughter, and good food and drink to smooth the way. May it all come true for you, Jo, in spite of all that people have cruelly done to you in the past and all the medical hardships biology has handed you.

I wish you well, SS

Debbie said...

Sometimes it is better not to know the future.
And to answer your questions yes and yes.
I know that most Mums think this but I believe that I have been blessed with the most wonderful children in the world. You three make my life complete and are the reason I live.
I will never forget your words "look Mummy you're running" when we went to cross the road that day. You were always there to help me and it seems fitting that you were there too when my health turned a corner for the better. Thanks for everything.

Laura said...

I'm sorry, Jo. That's a very hard decision, and one of those where there isn't really a "right" one, because you'd have to know the future to know what to do. I do think that everybody has their own "thing" to go through. My daughter will have to cope with the divorce. Other children deal with sick parents who may have been healthy at the time of their birth. And nobody likes those kids who didn't have to go through anything, because they have less empathy and are more likely to be spoiled. This, of course, isn't trying to convince you one way or another; just a perspective you may not have thought of. Only you and Justin can decide what's right for your family, but either way, we're here for you and rooting for you every step you take!

Brandy said...

I'm sorry, that's hard news to get. Have you ever thought of trying a vegan diet? My boss has rheumatoid arthritis and has been able to cut down his medications by 75% after starting a 100% vegan diet. Read the China Study. It's very interesting.


MrsSpock said...

Here from L & F. I have a host of autoimmune issues myself- fibromyalgia since age 15, sacroiliitis because of that fibro, IBS, and now an autoimmune neuropathy that may very well be MS.

I have had one pregnancy, and will say my Fibro and sacroiliitis were quite bad during pregnancy, particularly the 3rd trimester. My husband had to help dress me and help me in the shower. When my son was born, I was VERY deconditioned, but made it through and though I have not gotten back to baseline, I am functioning well enough to be trying for #2. My IBS actually went into remission during pregnancy, as mine is not the constipating kind.

We thought very long and hard about whether another pregnancy would be good for me physically. My family doc and a high-risk OB gave me the green light, but the MFM did tell me my risk of preeclampsia is double due to my autoimmune issues, and he recommended taking a baby aspirin during pregnancy, which would reduce that risk.

I refused narcotic pain-relievers during pregnancy, and ended up using a TENS unit and physical therapy exercises. I slept sitting up in a recliner most of the time. It WAS difficult, but for me, it WAS very much worth it. I even ended up with a c-section, and still was able to recover well- just much slower than the average Jane.

Keiko said...

I don't have much advice, unfortunately... but I wanted to send you wishes of healing and clarity. I think before you start moving toward anything concrete, give yourself some time to absorb all of this and find a moment of peace for yourself. Be strong! Be sad, be angry, be scared, but at the end of the day: be the strong woman you are.

Searching said...

Ah, a familiar pain and path. Not exactly the same as yours, but the agony between your desire for a child, your love for that future-child, and uncertainty what your health may mean for them in so many ways. It's such a difficult burden to bear along with all the illness itself brings to your life. I am so, so sorry you are in this boat. I will have to start from the beginning of your story when I have time, but wanted you to know you aren't alone.


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