Monday, January 30, 2012

On our way.

Today we had a follow up with our family doctor to discuss how the most recent pain medication change and the rather uneventful appointment with the neurosurgeon where he said he couldn't do anything. I think we were both anxious and were both a bit scared today. Just unsure of where things could go, what we were going to be told, that we were going to hit yet another dead end. Or at least what would feel like another dead end.

That isn't what happened. We got a referral to a pain clinic to discuss different treatment options, as well as the possibility of perhaps seeing if he is a candidate for a spinal cord stimulator. Our doctor is also conferring with a neurologist to see if they think a nerve conduction study can tell us anything new that we don't already know. Some medications were switched around yet again, but that's nothing new at this point.

All in all it was a rather uneventful visit. A bit of waiting for this and waiting for that. And maybe once we have those visits we will have a plan in place besides "wait and if this happens we do that." I will say, I am grateful we have the doctor we do. He is so amazing and great at explaining everything, working with Kelton, and really being part of a team with us versus just treating us like children and doling out rules to follow. In short he talks to us and with us, not at us. When you're dealing with something as frustrating as a trying to control chronic pain, the right provider can make all the difference in the world.

In seven weeks we move. To my Ga-Ga and Pa's old house. This house is probably the closest I've felt to a home in my entire life. I never liked my house as a kid. I was, and to an extent still am, convinced it was haunted. Maybe not by ghosts, but there is a very negative energy in that place. And I am not the only person who has lived there and felt it. But Ga-Ga and Pa's is just warm and happy memories of life with them. I've lived there before, in 2007 and 2008. It is a bit sad, but also good in a way. I'm excited to settle in and do some decorating and making it a home.

I will also start school soon. I'm doing both pre-requisites and other classes that boost my chances of being admitted to a local radiology technician program. I will apply next year to start in their fall 2013 class. I haven't been in any sort of school since 2009 when I left massage school for good. I am a bookworm. I am a learner. I love to learn. I live to learn. The idea of being in school again thrills me! I am already geeking out thinking of notes and books and studying.

We are enrolling Miss 6 year old into an online public school. Basically we are enrolling in another district in our state (I admit I don't even know WHERE in Iowa this town is!), and she will attend their online virtual academy. My husband and I are still her learning coaches, but now the work is submitted to the district and they take care of sending us curriculum, the testing, the official paperwork and all of that. It is a good compromise for us. In the meantime, we are still working on Hooked on Phonics. We've been doing Kindergarten, but she's made such leaps and bounds that we're looking at upping her to the First Grade curriculum soon. I'm so proud of her! The love of learning has clicked with her and watching her figure things out around her is so special. When we go to a restaurant I make her read the name of the dish she wants instead of pointing to the picture to tell me what she wants. And she does it! Seeing her face beaming with pride when she discovers a new word is just the best feeling.

Miss 4 year old, on the other hand, is a very frustrating pupil! She is always gogogogogogogo and can't just sit down for even 5 minutes to try to learn letters. At four she isn't able to recognize all of her letters or even tell you the sounds of all of them. Which is very different from her sister, who knew the letters but struggled putting them together. She has a huge vocabulary, far above most four year olds. She just has no interest in writing or anything else involving fine motor skills. We still get pages full of scribbles. It's definitely a struggle trying to figure out HOW to catch her attention, but it's a challenge I welcome.

Miss 1 year old is adding more and more words to her vocabulary each and every day. She understands more, too. And loves having a baby smaller than her to dote on. At 21 months she is starting to work on potty training. Lots of accidents (I will miss having all wood floors when we move for this reason), but she cleans up after herself, and knows it's an "oops."

Mr. Babyman is 2 months old. He was the grumpiest grump ever to grump, but after two weeks of chiropractic care he is now a smiling ball of happiness. He is really good at supporting his own weight on his belly and propping himself up on his arms. He loves his sisters, loves naked time, and loves it when we shake his legs back and forth. The kid smiles with his entire face. From forehead to chin, it is really over the top and so cute. We couldn't have asked for a better baby.

All in all, we don't know where life is headed. There are still quite a few big things up in the air and changes in the near future. But it feels like we are finally on an upswing. And that feels good.

Thursday, January 26, 2012

Living with Chronic Pain, Pt 2: Guilt

Guilt. It is a feeling familiar to those who are married to someone with a chronic condition. So. Much. Guilt. You feel guilty that they miss out on things that you know they would enjoy doing with the family. You feel guilty that you still need their help when they need to do nothing some days. Guilt for feeling resentful or angry at their condition, even though you know they feel the same. Guilt for considering it tour fight too, when they have to fight so much harder and be so much stronger than you to make it through the worst times. Guilty for being frustrated in the new and tumultuous dual role of spouse and caregiver. And worst of all, you feel guilty for being well (because both of you being in pain and/or suffering is somehow so much better).

I just want to take a second to shout what I hope you already know: THERE IS NOTHING TO FEEL GUILTY ABOUT! Absolutely nothing. All the emotions above are normal. Feeling guilty is, too.

You feel a bit like a single parent, but with the frustration of having a partner still in the home. The maddening thing is that you remember the helpful person they can be and a part of you never let's go of that expectation of helpfulness. Even if your rational brain knows they can't do something, you see them there and your subconscious doesn't see their limitations, just that you're handling way more than they are.

The hardest guilt for me has been feeling guilty about my anger. When my husband lost his first of two jobs his condition has cost him, there was a bogus reason, but we both believe it was due to the decline in performance due to his pain. For a long time I didn't allow myself anger about any of it. Then, I let myself get upset at his employer. The reason he was let go was ludicrous and they should be ashamed! And I felt a bit better. Then I let myself feel angry at the condition. And I am still angry that the doctors don't/can't/won't help him.

Today I let myself feel a different kind of angry. Today I was angry at him. I was angry that he never filed for short term disability when things got bad and instead tried to push through and provide for us. That got us really far. As soon as I admitted that anger, I instantly felt guilty. He worked his butt off until he couldn't anymore. He is in pain and this isn't a choice he made. He isn't lazy, isn't trying to freeload. He helps every time he can as he can. What right did I have to be angry at him?!?

Then it hit me. I had EVERY right. Because I do not feel this way all the time. I do not berate him or judge him or try to make him feel bad because of his condition. But I am battling it too. And it will take its toll on me mentally instead of physically. If I try to push these feelings away out of guilt, they will only fester. I have to be okay releasing them so they don't hold any power over me, over him, or over us.

There's a lot you give up to take care of a spouse, especially on the bad days. That's for another post. Perhaps, we need to give up one more thing. The guilt. Give it up and respect that you have the right to feel that way, and by acknowledging the feelings you can prevent things from boiling under the surface.

Wednesday, January 11, 2012

Living with Chronic Pain, Pt 1: History

The past six weeks have been a roller coaster. And the ride, it isn't over yet.
(NOTE: This is the first in a series of posts. I am mostly going to be writing about being the spouse/partner of someone with chronic pain. Some posts may be about my experiences with my own chronic pain. However, while chronic, my pain is not severe or debilitating, so I try to be more "out of sight, out of mind" with it.)

Thanksgiving weekend, Kelton was in SO. MUCH. PAIN. Pain so bad the narcotic pain relievers he has been on for almost two years were not TOUCHING the pain. He was scared. I was scared. In the Emergency Dept. they did an MRI. He still had the herniated discs we knew about; but he also had a lipoma we were unaware of. The radiologist that read his report said he thought epidural steroid injections could help.

Since then Kelton has received the 3 injections he can receive for the year. For a bit after the second injection, things seemed GREAT. Kelton even managed to, for the first time in almost two years, stop taking narcotic drugs completely. He hasn't had one in almost two weeks. Last Thursday, he had his third injection. Yesterday, things started spiraling in reverse.

After doing some lifting, nothing extreme, and certainly nothing that would have even been a blip on his radar before this all started, Kelton's leg pain came back. It was mild yesterday, but by today it's like he has never had an injection. Another injection isn't an option. He had a consult and first adjustment with my chiropractor today. Apparently the lipoma is causing spinal stenosis. And any time he strains his back, the pain will return as long as the lipoma is there.

As long as the lipoma is there. Those words both terrify me and fill me with hope. They are scary, because what if the spine specialist we have an appointment with next week (God, please let him last until next week with this pain.) says surgery isn't an option? What if they say it is? Surgery is scary, but the idea of him living with this pain forever is even scarier. We thought the injections were going to be our magic potion, but they weren't. What if they do a surgery and it doesn't work either? At this point, optimism is hard to come by. This pain has cost him two jobs, cost us our house, and cost him the chance to be the father he wants to be (not that he isn't an amazing father, he just misses being active with the kids and they miss playing with daddy!). We're not sure how much more we can stand to lose.

Next Wednesday we meet with the spine specialist (unless we can happen to get in before that, which we're trying to do). I am praying, hoping, and crossing my fingers that they look at the MRI, meet with him, and say "Yes, you're a great surgical candidate. Let's start this process and get you out of pain!" But a part of me, the natural pessimist in me, is saying "Nope. Not going to happen. They are going to say there's nothing they can do, here are some pills to keep you numb forever." I hate to think like that. That is so far from what I want for him. It's even further from what he wants for himself. I see him struggling. I see him getting down on himself; talking about how he is a bad husband and father because of his pain. But that isn't him, he is not his pain. He's still the amazing, strong, wonderful person I fell in love with. And I have to have faith that God will provide us the doctors and resources we need to get him back to feeling like that person.

Wednesday, January 4, 2012

Welcome, 2012!

It will never be 2011 again. Never. That is awesome. 2011 was a year full of trials. We were pushed to our limits individually, as a couple, and as a family. And we came out the other side stronger, happier, and more sure of the strength of ourselves, our faith, our marriage, and our family. No matter what, the six of us are in this together, and God will provide. Those two simple facts are what carried me through some very, very dark moments. And I'm sure they'll continue to do so in the years to come.

2012. This year will be a year of change. Work and change. I will be returning to school to get my CNA and (God willing) begin working out of the home. My goal is to find a position that lets me work 3 overnight shifts a week so I still have 4 days a week at home with my family. Kelton gets his last in the series of 3 steroid injections to shrink the spinal lipoma on Friday. Hopefully within a month or so of that injection he'll know how effective it was and be able to look for work.

We will be moving. Same town, but we're going to be renting a home from family. The house we'll be in is larger, has a second bathroom, and we can still have a garden and chickens. The wild turkeys that frequent the front yard should mask the noise anyway. These suburbanites don't know the difference between a bawk-bawk and a gobble-gobble. ;) This is a bit of a scary change, but it is also one that definitely feels like a move in the direction that we need to go.

Personally my goal is to get myself back into shape. I don't feel healthy. I was just getting to a place of starting to feel healthy again after Lucy's birth when I got pregnant with Zane. Between the hyperemesis, SPD, and broken tailbone I did virtually no exercise while pregnant with him. The goal was really to move as little as possible to keep myself from hurting or throwing up. I'm actually not too concerned with the number on the scale, but I am extremely in need of toning up! I have made an initial goal of doing 500 jumping jacks a day. I can do only 50 at a time right now before getting winded, but I know that I have to start somewhere. Eventually I'd love to be running again. Trying pilates is on my "to-do" list as well.

I don't know exactly where this year will take us. But I am excited for the journey!