Doctors visit #8487202

Well, at least that's what it feels like! Yesterday's visit to the spine center was...a disappointment. There was confusion or something and the nurse that made the appointment for us from our doctor's office did not send hubby's medical records to the spine center. We have a copy of the MRI CD, so they at least got to look at that. But nothing else. Based on that, their options were limited as to what could be done yesterday.

The doctor said he does not believe the lipoma is the cause of the meralgia paresthetica (MP, the tingling, burning, stinging pain in hubby's outer thighs from hip to knee). He wants to get another MRI, ruling out anything higher up in the spine that could be causing it. He said if he were us he'd not do the spinal cord stimulator, because if the lipoma isn't causing the pain the stimulator won't help. Not have any sort of back surgery actually sounds like a relief. We called the neurologist we saw last month back about a nerve block injections. But the only problem is those generally involve steroids, and because of the lipoma he has to avoid steroid medications.

We've found a couple of case studies from here in the States and an information page from a health authority in the UK (I tend to like their research into painful conditions more after my struggles with symphysis pubis dysfunction while pregnant) that suggests pulsed radiofrequency can provide significant relief for some people. It is not invasive, no scary side effects like drugs, and can result in long term relief. It is definitely something we will be asking about with our chiropractor and doctors. Hubby has also called about getting a referral for physical therapy. In cases that have gone on as long as his and as severe, it isn't likely to relieve symptoms, but there's always that chance. Before PT can start, he's found some recommended stretches online and is doing those and starting to walk as well. Being in better shape can only be a good thing.

I'm also trying to get him to realize he has limitations right now. While this pain is there he needs to doing things in moderation. If he is doing his exercises each day, pick one other thing to do. Maybe it's cleaning something or mowing the lawn or playing outside with the kids. But just do that one thing and stop. Which is not him. Before this started a normal day involved mowing the yard then playing with the kids and a bike ride after dinner. He was active. Trying to re-train that mindset is, I think, almost as hard for him as living in constant pain!

So right now it is just working on getting records to the new doctor, working on finding a physical therapy place, exploring the radiofrequency option, and finding a new pace for daily life. Nothing is a solution or an answer, but I feel like he has a new level of peace with how things are going. A renewed desire to take care of himself and take his health back into his own hands. And whether or not that helps resolve the pain from the MP, it can only be a good thing.

Doctors and Disappointments...

A very hard doctor's visit today. We finally got a doctor to admit that the spinal lipoma is what is causing the pain. But instead of removing the lipoma, he said in no uncertain terms he wants to keep slapping bandaids over it and just trying to cover up the pain. First by trying a spinal cord stimulator. Adding MORE stimulation that would currently be required to control the pain because as the lipoma continues to grow it will cause pain in more areas. And if that doesn't work, or doesn't completely work, cognitive behavioral therapy to teach him to ignore the pain. Why is it such an issue to treat the cause, not just the try to cover up the pain? Isn't that what medicine is supposed to be about? Healing and treating abnormalities, not just making it to where we forget they are there or learn to deal with a subpar life?

In addition to the difficulty of hearing this, the doctor was very patriarchal to me. At one point, I was sure he was going to tell Kelton to learn to keep his wife quiet. Kelton has had very little sleep the past couple of weeks. During the day he is sluggish and in a fog. New parents know what I'm talking about, that fog of sleeplessness that has you running a few paces behind where you normally are. Because of my interests in medical stuff, working in a pharmacy, and helping care for my Ga-Ga and Pa, I am really good with remembering both medication names AND chronological details of illnesses. So when Kelton couldn't remember something today, I would answer for him. This has NEVER been an issue with any doctor, ever. Today I was told I needed to "stay quiet". I had actually gathered my things to leave until Kelton asked me to stay. It was very hard to honor his request at that point, but I did. He told the doctor I remembered these things better than him and that's why I was helping answer, because he may miss details or mess them up because the pain makes it hard to remember everything. At this point the doctor asked if he's been evaluated for mental retardation. I found this completely offensive. Not because there is anything wrong with someone who has some form of mental retardation, but because he was obviously tired. It honestly blew me away, and there will be a letter written to the medical board about how we were both treated today.

Our next step is the NE spine center. We are hoping that if we have enough consultations with enough surgeons, one will agree to remove the lipoma. Every medical study, every research paper we find say that in his case, removal is the way to go. Even scarier for me is that they all say that when symptoms caused by a spinal lipoma are as severe as Kelton's are, that delaying in removal can cause permanent damage. I can appreciate not jumping the gun into a surgery, but this is ridiculous. I'm wishing that spinal lipomas fell into the category of obstetrical surgeries, as OBs seem to be the most scalpel happy bunch around! And I find myself wishing that my surgeon I saw for my wrist were still in the country.

In addition to doctor's we are taking matters into our own hands. I have a friend who is studying herbal medicine right now. We are getting some tinctures and liniments from her to try, and I just placed and order for a pound of dried chickweed to use in a tea form. Chickweed is known to break of lipomas. My fear is that the topical stuff won't work as well as they do on other lipomas since this one is within the spinal column, but we're willing to try! I'd love to start the herbs, find his pain gone and have an MRI done that shows the lipoma is gone. It may not be a very Christian thing to do, but I think I'd have to send a letter to every doctor who said it couldn't be this lipoma causing the pain saying "NEENER NEENER!" ;) Childish, yes. Likely to be ignored? Definitely. But boy would it make me FEEL good!

The Girls!

Ch-ch-ch-changes...

March brings spring, and with it many changes around here. I go tomorrow to finish registering for spring classes at the community college. I'm doing pre-requisites so I can apply to a radiology technician program. Classes start on Thursday. Yay procrastination!

On the 13th, Kelton sees a doctor who can hopefully offer us a surgical answer to the condition he has. We have a diagnosis of what the pain is called. But opinions have differed on what is causing it. And there are two different surgeries that can get rid of the pain. One gets rid of (what we believe to be) the root cause, and the other just stops the pain from traveling that far along the nerve path and can just cause permanent numbness versus pain relief.

On the 22nd we have to be out of this house. We can't move into the house we're renting until April 1st. So instead we are going to be moving our stuff to a storage unit my mom and her husband have graciously provided us with, and we will temporarily be living at my grandma's house. My dad and grandma are in Texas for the winter, so she is just turning her utilities back on a little early and we will have an entire house at our disposal. Beats having a single room or being split up. A friend and I are hoping the golf cart is in the garage so we can ride around their small town on the golf cart. Gotta have fun where you can get it! ;)

So 10 days and two moves. First from the house to the storage unit, then from the storage unit to the new house. Very hectic! We also just got five chicks, so they're part of our move, too! Thankfully they're brooder box keeps them contained, and they will stay in there until they are big enough to be in the coop full-time. We'll be buying a coop either from a friend who is selling hers or from the farm store.

The biggest change in March is our sweet little Lucy will be turning 2 on the 23rd! My little half-pint is talking up a storm. She loves her baby brother, following her sisters EVERYWHERE, and animals. Oh, does she love animals! The first store we went to for chicks didn't have the breeds we wanted, so we left. She broke free from me at the doors and RAN through the store back to the bins of chicks yelling "My chickie! My chickie!" She may have my flair for the dramatic, too. I can't believe that at this time 2 years ago I was in the midst of a horrible run of prodromal labor, willing the last of the pile of snow from our 3 blizzards that winter to melt, because I wasn't having my spring baby with snow on the ground! A few days before she was born, Kelton finally went outside and broke up that little patch of snow so our yard was snow free.

I'm praying this month brings answers for Kelton's health. What a burden that would be lifted! I'm praying the move(s) go smoothly, that our family and our chicks stay healthy through the stress, and that we all handle these many transitions with grace and love for one another even in the crazy hectic stressfulness of it all.

Dreams for the new homestead

We move in about 5 weeks. I need to get started purging and packing! Mainly, I am dreaming of how to make the new home a homestead.

1. Chickens

Anna-Lee and Nugget, Summer 2010

One of the first things we have planned is getting chickens again. Our hens that we had were all sold off or killed by the basset hound we had (she killed the last one 3 weeks before dying, a troublemaker up to the end!). It has been almost a year now since I have had an egg worth eating! Chickens are our at the top of our priorities once we move.

That's not to say we don't have decisions to make! Do we build a coop utilizing the wooden swingset we have in the back yard? Or do we do a dog house set up? Enclosed run is a must, but so we use a chain link dog run? Or build something out of wood and hardware cloth/chicken wire that we can move to different parts of the yard?

Then there's the biggest decision: buy chicks or started pullets? We will only have 3-4 laying hens tops if we stick with large fowl birds. Kelton says chicks. Not only because they're cute and fluffy, but so they can bond with us and the kids before they're pecking size. I lean towards started pullets since they freeload for far less time, and we get eggs sooner. I do understand his reasoning, but my argument is the bird in the photo above. Nugget was an 18 month old hen when we got her. I don't know if she was bought as a started pullet, or rescued from a commercial egg setup. She came to us from a small farm about 50 miles away. She was part of a trio, but the other two were too flighty (common in Leghorns) for us to keep in our backyard. Nugget, however, was the lap dog of chickens. She jumped for her food, followed us all over, and sat in our laps when we were outside enjoying chicken TV. She ate spiders around our house, and gave us a huge egg every single day. Best. Chicken. Ever. I think a started hen from a breed known for their friendliness would have no problem adapting to us fairly quickly.

2. Gardening

I tried to garden last year. I really did. I had a container garden with some tomatoes, a pepper plant, and some herbs. They did well, even with our unusually HOT summer that was muggy with little actual rain. However, I was pregnant with hyperemesis. Combined with a streak of hail and wind storms (bonus to container gardening is that we can throw the garden into the camper when there are 80 mile per hour freak winds!) and my inability to get out and tend to things like I should, the garden failed. Sure, I got some great herbs to use in cooking, and a few tomatoes, and maybe two peppers. I'm still very much a noob when it comes to this gardening thing. I think we're going to try square foot gardening, or maybe stick with the containers. It's something Kelton and I need to figure out before we move. I'm checking to see when I should be starting seedlings, though most will be bought as starts. As we pick the fruits (and veggies!) of our labor, canning and preserving will be part of our gardening journey.

3. Continue on the DIY Train

We are do it and make it yourself-ers. I make my own toothpaste, and our own laundry detergent. We tried a homemade dishwasher detergent, but it definitely left a film, so still searching for the perfect 'recipe'. My Ga-Ga had clothesline in the backyard, and the posts are still there. Our clothesline was something that was a selling point with this house for me, so we'll be getting some line and putting those posts to good use again. Once we are done with freezing temperatures and snow on the ground, I'll be drying outside as much as possible. I'm wondering if it's legal to have clotheslines visible from the front of the house. Right now the line is in just about the most inconvenient spot in terms of having to lug baskets of wet clothes! Moving it to the side yard would be much easier on the back. Since we don't dry underclothes (aside from diapers, which don't count!), the embarrassment thing isn't a factor.

Other things that we want to learn to do for ourselves include sewing, making more of our own health and beauty products (soaps, lotions, etc), brewing our own rootbeer (I say I want to brew my own beer, but I'm not a fan of beer at all!), and I may look into wine making. With the herbs from our garden, I'm planning on making some loose tea blends for myself as well.

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.

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 much.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.