I don't think since I started this blog well over 3 years ago that I have gone as long as I just did between posts. I've had many blog posts brewing in my mind and heart, only to get lost in the chaos of life and never make it off the tips of my fingers. That would be okay if I didn't know that writing always helps me work through the things that stand between me and this thing we call healing.
I struggle because I want this blog to remain Rachel's - to be about her and my journey with her... but she's been gone so long that it's hard to actually write about how she is in my days, because she is just woven into every fiber of my being and is always 'in' everything I do... the happy, the sad, the indifferent. She is there.
Some of you will remember that shortly after I had Asa, I randomly fractured my tibia. That was followed by a few months of extreme pain in my joints and bones. I went to my regular doctor, my OB, the ER, a Rheumatologist and even had a bone density scan done. I had test after test. Scan after scan. Advice after advice...."Eat this, don't eat that". "Do this exercise, don't do that one". "I had this before and all I needed to do was...." My primary told me the only off in my blood work was that I was vitamin D deficient.
I tried everything. Eventually the pain started to go away. I started to be able to do stairs again. I gave vitamin D the credit and I never went back to the Rheumatologist... and never thought twice about the fact that I didn't get my results. I eventually started running again and was feeling pretty good and fairly strong.
A few weeks ago I got what I thought was a pinched nerve in my neck. Within a couple of days, it took over my entire neck and back to the point of tears. I could barely even pick up my little man... I was thinking I had some type of virus that was going to go to my brain and kill me - I know, that sounds dramatic, but it hurt and it was not a pinched nerve kind of feeling. I've had neck issues for about 5 years - had x-rays that have shown "arthritis" and so neck pain is not new to me... but this felt different than even that. Then I started to have the joint pain again. Well, it never *really* went away, I think I just get used to living with it. But it started to be the kind that keeps me up at night. I really started feeling it when we were in Maine. My knee hurt so bad I couldn't sleep... but I just kept blowing it off as me being out of shape and overweight.
Last week I decided to call the Rheumatologist to get my results from the blood work he ran almost 2 years ago... The nurse said she would call me back and when she did, she said that the Doctor said I needed to come in for the results. She said "It did show something that might explain why you're hurting". They got me in 2 days later. I was hoping this guy just wanted to make an office visit out of this... but that's not the case.
I tested positive for two things.
One is called Spondyloarthritis. I think (from what I understand) this basically is a group of autoimmune diseases that are similar to Rheumatoid Arthritis. He has not narrowed it down yet, but I have every visible symptom of both Psoriatic Arthritis and Ankylosing Spondylitis, which are under that category. He said most often, the different forms in the group are not separated, but tend to all be present in one form or another. They both attack my joints, but the latter will cause hairline fractures in my spine which then cause the vertebrae to fuse together, making me lose range of motion. (in severe cases, so much that you can't look ahead) I've already lost range of motion in two finger on my left hand. I only noticed because when I leave Rachel's grave, I always give her the "I love you" sign and I can't do it anymore. Based on the pain I have in my spine, I believe I do have damage there, but he wants to wait until I'm done nursing to do a scan. I'm wondering now if this is why my tibia was broken without me knowing how I did it....
The other thing I was positive for is Crohns. (another autoimmune disease that attacks the stomach and intestines) My older friends will remember all the issues I was having with that years ago - but again, even after 2 colonoscopies and an endoscopy and a ton of doctors visits, they diagnosed me with IBS (which is totally a BS diagnosis that they give to anyone they can't figure out, in my opinion). I've watched my sister struggle with her crohns for years now. It's been a nightmare. And even though it's not a surprise given the symptoms I have had and the fact that it runs in families... It's still a hard pill to swallow.
Thankfully, the Rheumatologist I am seeing is amazing. Besides the fact that he is the only doctor out of a dozen I've been to in the last 5 years who could figure this out and didn't just blow me off... He is not only very pro-breastfeeding, but also respectful of my allowing God to direct us on the children we have and working with me from where I am rather than pushing his opinions on me.... unfortunately, there is no cure (besides a miracle) for either of these things - and any meds that will help with pain and damage caused by the disease come with a long list of scary side effects, including causing Lymphoma and other cancers. One of the two he wants to use on me says that in their study 30% of people who used it had babies with neural tube defects.... as if THAT doesn't rub me the wrong way....
I had more blood work done and go back on Wednesday to try to make a plan of action for treatment. Please pray for me, I've been in a lot of pain - especially my knees down to my feet (today anyway, but it moves around like crazy) - and I want to do what I need to in order to slow down the effects/damage to my bones and joints, but I'm going to need God's guidance in making these decisions about medication and natural options. I do know it's not likely that I can do nothing.
Please, I'm really not wanting ANY advice right now. I'm still digesting this. I have barely even looked on line because I just can't mentally handle it. There is a lot I still don't understand and I am still waiting on more information from the doctor. I know that I am in pain. I know that what I have is incurable. I know that there is a good chance that it will severely affect my life in every aspect - and so I really don't want anything else but hugs and prayer. I need prayer. It's all very overwhelming. But I'm okay with not having answers right now. So please just let me figure this out at my own pace.
So that is the medical side of this - but I need to get out what has been going on in my mind and heart - all logic and science aside.
I went to the doctors for a "routine ultrasound" on August 4, 2010 and left there with a diagnosis that changed the rest of my life.
When I left the doctors on Monday, I felt (in a much different way) the weight of a diagnosis again. Just like on the day of Rachel's diagnosis, the first thing I did was call my mom (who was babysitting just like she was for Rachel's ultrasound) on the way out the door... and standing in another parking lot, outside of that same van, I told my mom what I had just heard - And although I didn't even know the technical name of what he told me I had, I knew that the rest of my life is going to be different. I left Rachel's ultrasound with a piece of paper with the words "Anencephalic Baby" scribbled on it. I couldn't even read it. I had to have someone else tell me what it said. I left this appointment with more scribbles that I couldn't read and had to have someone else decode it for me. Obviously, I didn't feel the tragedy that I felt back then, but I felt the same sense of powerlessness. The same sense of the fact that I really didn't fully comprehend what was happening. And the same sense of dependence upon the only One who can do anything about an incurable, unexpected, life changing diagnosis....
I still find it all hard to believe. I find it hard not to look into my future and worry about what this is going to mean for my quality of life. I have wondered if I will ever be able to do the things I hoped to do.... I wondered "What if I can't pick up my grandchildren?" Things I have never had to think about - things that most people don't think about. I worry about what genes I have passed on to my children and if they will have to endure this crap. But somewhere in the middle of all of this 'reality', God has brought me to the realization that He brought me to with Rachel.
I have to celebrate life while it's here.
For today, I can pick up my kids. It hurts, but I can do it. I can climb stairs, I can clean my house. I can do laundry. I can rearrange my living room and deep clean my upstairs. I can drive. I can bring my daughter shoe shopping. I can tie my son's shoe and change my baby's diaper and nurse him. I can give my toddler 10 kisses over the side of the crib (that hurt my spine like crazy, but he got what he needed from Mama tonight) I can cuddle with my boys and put my ear on their chests to listen to their heartbeats. I can still give haircuts and I can still type...
I did all these things today. I do have a feeling that this is going to be a very painful road. And honestly, I'm not ready for it. But I have been feeling it coming for a long time.... I trust God's timing in allowing me 'in' on this information. I know that He doesn't cause death and sickness. I know He doesn't always heal people. But I know that He will be with me.
So my goal - even if I'm scared of what this all means or what lies ahead - is to embrace each moment I have and each thing I *can* do. Just like I did with my girl. I fully intend to keep using my left hand to sign Rachel "I love you" as I drive away. I will not switch to my right and just let this thing take over my bones without a fight. I'll admit, at the risk of sounding vain, I am worried about being hunched over with crooked fingers, broken and brittle nails and bulging eye balls. I'm also afraid of being in constant pain. I just don't want Spondyloarthritis or Crohns to define me anymore than I wanted Anencephaly to define Rachel.... but even if it gets to the point where I cannot hide that these things are part of me, even if I one day have to admit that no matter how hard I fight, it's going to win....Like I had to on December 3, 2010 when I watched my little girl die in my arms... I pray with all I am that I can allow God to make something beautiful of it. Because if nothing else, I *will* leave my children a legacy of what it means to hope in Jesus and trust in our God. I will. Death and sickness only win on this side of heaven.