Tag Archives: chiari malformation

Baby EC

Baby EC arrived on September 22, 2015 at 3:21 pm via emergency cesarean section. He was very small… 5 pounds 8 ounces and 18 inches long. By the time we left the NICU, he was down to about 4 1/2 pounds.

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He was so tiny and it was scary seeing so many tubes, wires and monitors on him. I couldn’t see him for 24 hours after he  was born and a whole day aftet that before I held him for the first time.

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He is now 10 weeks old. He weighs 9 pounds 5 ounces, and is 21 inches long. He is in the 1st percentile in both weight and height for baby boys his age… so he is still extremely small. He looks like a 2 week old instead of a 2 1/2 month old.
BUT. He is so alert and meeting his milestones on time so far. He is growing well from where he started, according to his pediatrician.

My whole pregnancy was very difficult, as was the birth.

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We don’t know why he is so small.  He had problems at birth that landed him immediately into the NICU. He did have an unknown true knot in the umbilical cord that could have been life-threatening if i hadnt needed a csection for other reasons. I freak out every time I think of how it could have gone down… I can’t imagine leaving that hospital without my precious little man.

Those were the longest and most difficult days in the NICU. My poor boy went through so much in the first days of his little life.

We are in a good place now. Baby EC seems to be healthy, although it will be some time before we are certain that there are no lasting effects of him breathing in fluid at birth and the lack of oxygen to his brain.

We will be going to a geneticist in a few months to test him for the connective tissue disorder I have. EC has a 50% chance of having Ehlers-Danlos Syndrome. I pray that he doesn’t have that, or Chiari Malformation,  the condition I have had 2 brain surgeries for. Both are genetic.

Despite the difficulties and stressful times we’ve been through in the past year, life with baby EC couldn’t be more perfect. He is absolutely amazing and stole my heart from the second I met him.

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Another Appointment

So Tuesday morning I am going to Little Rock for my appointment with a geneticist.  I’m pretty nervous because I’m not sure what is going to happen.

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(Addy is having a very relaxing Easy)

I am hoping they will refer me to the other specialists I need to be seeing. Since moving here from OKC about a year ago, I’ve only gotten a pain management doctor in the state, and that was a complete disaster. I’ll write a post about that experience sometime in the near future,  it will make me too angry if I try to do it now.

I know I need MRIs of my brain and spinal cord. Since having surgery for Chiari Malformation,  I am supposed to be scanned every 6 months and it’s been over that.

I’ve been having significant numbness in my hands and, recently,  my feet and arms. This scares me because it is one of the symptoms of Syringomyelia,  the hole in my spinal cord, getting worse.

Also, I’ve been having a lot of neck pain, sort of like someone is jabbing a knife around in there. I know I have craniocervical instability and that will most likely need to be fused. That type of surgery scares me a lot, but I know it would help a lot of the pain go away, so I will go through with it if suggested.

I’m interested to see what the process is at the geneticist office and I’m really hoping they will refer me to some good, knowledgeable doctors.

If you have been to a geneticist,  or have any of these conditions,  I would love to hear about your experiences: Chiari Malformation,  Syringomyelia,  Ehlers-Danlos Syndrome,  craniocervical instability,  spinal fusion, Tethered Cord Syndrome,  POTS,  etc.

Hope you all have a great Monday morning!

Hugs, Kat


A Situation with Pain Management

So… I’ve been procrastinating making this post… but I have come to terms with the fact that I don’t know what to do. Any advice is greatly appreciated.

I’ve been going to pain mgmt for around 3 years. Last year I moved and had to find a new pain dr in my new state. I waited 4 months to get into this place… my first visit was GREAT. The Dr said she wanted to help me, that she would read up about my conditions that she was unfamiliar with, that we would keep my medications the same until she came up with a better treatment plan that would help better than just the meds I was on.
That was the ONLY time this Dr saw me in 8 months.  Oh, I drove the 2 hours each way every month, but was only seen by a nurse, required to take a urine drug test, and given med refills, even though I requested each time to see the dr.

A few months ago I noticed I was having extreme side effects and found that I was no longer taking 15mg oxycodone tablets, but that I had been taking 30 mg tablets. I asked the nurse if that was right… she said yes… but I KNOW for a fact all the ones I’d had before we’re 15mg tablets. So this place either screwed up or they upped my dose without my knowledge.

So about 2 weeks ago I went to my monthly appointment,  this time determined not to leave until I saw the actual doctor.  I had made up my mind to ask for a referral to someone else because obviously I was unhappy for several reasons. When the nurse took me back to get my vitals I told her right away that I needed to see the doctor and that I wanted to be referred somewhere else.
So the doctor finally comes in after e hours and tells me that my last drug screen tested positive for hydrocodone which I do not take. She said it was an amount equal to 1 hydrocodone pill. I told her I do not ever take anything but what is prescribed to me period, that I was not happy that she had only seen my the very first visit,  and that I needed a referral somewhere else. She wouldn’t say anything except to accuse me of taking hydrocodone and yelling at me that I needed to tell her where I got it. After yelling the same thing 3 times she told the nurse I needed to leave. She looked at me, told me to find someone else and that I needed to leave now. I asked twice if she would refill my scripts until I could find another doctor. She ignored me both times. The nurse told me to go sit in the waiting room. An hour later the receptionist called me to the desk, gave me a letter of “dismissal” because I had “used medication that didn’t belong to me” and a tapering off prescription with a ridiculous timeline considering the amounts of meds and duration I’ve taken them.

I got home and looked at the copy of the drug test. It did NOT show a positive result for hydrocodone,  but it was positive for a small amount of Norhydrocodone which is a metabolite of hydrocodone.  However under the result it said that small amounts of NORHYDROCODONE can be found in patients who take oxycodone,  which I do. Internet searches have confirmed this for me.

So much for the fucking hyppocratic oath with this dr!!!

What would you do in this situation? I know I need a new pain dr, which will probably take months…


NaBloPoMo Day 3

Here I am again, only 3 days in to this commitment and already feeling like I’m struggling.  I think it’s just because I procrastinated writing and now I’m not feeling well this evening.

Might as well use this to my advantage and bring up the topic of my invisible illnesses. Well… not all of them, but the main three. These three and all the rest are all connected. It sucks, and unfortunately I’m finding others through my blogging journey who are suffering with the same monsters.

I have Ehlers Danlos Syndrome (EDS), which is a genetic connective tissue disorder. I was not diagnosed until 2011.

I also have Chiari Malformation (CM), which is a congenital problem with the brain herniating downward and putting too much pressure from the cerebellum on the spinal cord.

In my case, this caused a fluid filled hole inside my spinal cord. I still have nerve damage and some paralysis in my fingers.

I had decompression surgery in 2009 which involved removing a piece of my skull at the base of my head, removing parts of two vertabrae, cutting the protective sac that surrounds the brain to patch in synthetic material for enlargement. This allows the brain to have enough room so it won’t damage the spinal cord any further.

Also, I have Fibromyalgia. These three illnesses have been diagnosed together in many patients with EDS.

EDS also has quite a few subtypes. Some of them are identified by genetic testing. Others… not enough research has been done to give a clear diagnosis. Sometimes the subtypes even cross.

Enough of the boring medical terminology though.

EDS makes me hurt badly in almost every joint my body has. I dislocate joints multiple times a day. When I sleep, my ribs, hips and thumbs usually dislocate and wake me up.

I get lots of bad headaches from the CM. My neck is unstable, partially from EDS but moreso after the surgery.

Fibromyalgia causes multiple symptoms and widespread skin pain for me, but the brain fog is the worst. My memory is that of an elderly person. I struggle with putting my thoughts into spoken words. It gets quite frustrating.

Now my head is hurting worse. I took medicine. It usually makes me sleep
I’ll try to do better with this tomorrow.

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Things I Need to Get Out

I don’t know myself anymore.  I blame my illnesses, and yes… mostly they are to blame and I have the right to blame them. But part of me blames myself… and others.

I am not strong enough. I used to be the rock that kept everything together, the glue that bound it all up. I used to be strong… stronger anyway. I was very good at pretending to be stronger than I was. I was very good at pretending life was perfect.

Something very bad happened in my life, when I was about 24. It changed me, broke me in every way possible,  chewed me up and spit me out in pieces. I can’t talk about that now. It’s just too much… but it’s important to note that this event occurred.

Perfect life turned completely upside down and inside out. I lost everything… even my very soul.

I was able to pull it together somewhat on the outside after a couple of years, but the person I was before the horrific event… that person is forever gone.

I’m screwed up in the head, you see. I’m worthless… I’m a piece of trash too insignificant for anyone to even bother picking up or even kicking aside. No matter how many times anyone tries to convince me otherwise, I still know it’s true.  Because I’m the one who has to live with myself… it’s easy for someone who doesn’t even know you to try and make it okay with simple words.

I have abused myself in ways I can’t even describe.  Pain… I deserve all the pain… I need the punishment for being such a piece of shit. Punishment from myself,  punishment from others, punishment from my illnesses…

I let people emotionally abuse me. I deserve it. One person in particular really.  The only one I’ve ever let get close enough to me for it to really hurt… to cause emotional stabbing and beating and slicing and scarring… not just a sting from someone who doesn’t matter.

This person really fucking matters and I’m not even sure why sometimes.  I love him. Well, in the only way I know how to love… which obviously isn’t ever right or nearly enough… but still.

The only person who I can never completely push away… always within reaching distance… even though I know in my mind the emotional abuse is very bad for me… but still, I love him and he’s always there for me. Even when he’s not. I know that doesn’t make sense to anyone who happens to read it… I can’t find the right words to even begin to explain what that means or how it feels.

I am on an emotional roller coaster.  He has the controls and I’m sitting in the seat… but I’m blindfolded,  so I can’t see what’s coming next. Is it going to be calm and level?
Going uphill and getting better, more excitement and happiness, feeling high on the world, only to be dropped hundreds of feet and landing there alone at the end of the ride, disappointed that it’s over, that it ended suddenly,  that it hurt so much when it jolted to a stop, but still getting excited because this roller coaster is never ending and my brain can’t wrap around the thought that it is going to end up being the exact same thing every time…

That’s what loving him and being with him is like. Yet I can’t get off the ride. Ever. He has the controls and never stops long enough for me to leave the amusement park. And even if I did leave it, I’d be back. Because that’s where I want and need to be. It’s the only place I feel safe and secure, even though it’s the most dangerous place for me to be.

It wasn’t like this in the beginning of Us. I had a good job and good benefits,  so did he. We had so much fun together. He helped me as I began picking up the pieces of my shattered life.

Then I got sick. So sick. Two brain surgeries and multiple diagnoses later left me unable to work and in tremendous pain. Once again, just as life had started looking good… it ended almost as quickly as it began.

Depression overtook me. Apparently I became an abuser as much as I was an abusee. And I don’t think I even realized it at the time. I just remember feeling numb… nothing… he says I laid in bed for 2 years. I’m sure I wasn’t pleasant. It took a toll on him too… I do remember his abuse… just not mine.

I’m yet a different person now than I was before I got sick. So I don’t know who I am anymore… at all.

I am in too much pain… physically,  mentally, emotionally. He and I live in separate states now… but we’re still together. When he visits, it’s good. When he’s gone it turns to shit and I’m left unable to even talk to him on the phone because he turns into the abuser again.


Things I Collect: Part 1

So I’ve decided to do a series of posts on things I collect.  I collect a lot of different things, mostly because these things make me happy!

Being chronically ill and being unable to do a lot of things I once enjoyed, these collections help fill some of the void I have from being mostly homebound, especially during cold or rainy weather. (Which has recently started where I am… cold and rainy. I’m afraid Autumn weather won’t last long if at all).

I’m going to show a partial collection today, because some of them are still packed away from the move. The most special and unique ones are still in a box, but I will get them out as soon as I am up to the challenge 🙂

So I suppose you’re wondering what this collection is…

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This is a part of my chopstick collection! The best are yet to come, but these ones are pretty cool too.

I actually use these chopsticks a lot… but not as eating utensils (I have regular ones for dining in my kitchen. Those ones are plain and uninteresting. )

These are the chopsticks I use to put my hair up with sometimes, in different ways. One of my fellow bloggers, Anouchka from LifeOfBun, actually asked me to do this post. She uses chopsticks in her hair too, and has a great tutorial on some of her styles here!

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These aren’t technically chopsticks, but I stuck them in here anyway. They are called hairsticks. They are a bit difficult to work with because  their width and my thick hair don’t cooperate. But they are so adorable I don’t mind a little frustration to make them work!

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These are made of a special kind of wood… I forgot which kind, but they came in a set a friend brought feom Japan. I love the shape of the tops!

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These are quite unique and have lots of different colors and textures. I wasn’t able to capture all of their amazingness with my camera…

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These are plastic chopsticks… I love the black base and the colorful contrasts towards the tops. I wear these a lot too.

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These came from an Asian restaurant in Chinatown years ago when I went to San Francisco for a few weeks. I don’t own many clothing items that match these, but I love the gold detailing so I wear them anyways!

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These are one of my favorite sets. They are shorter than most of the others and much simpler to use, plus they are lovely, I think!

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These last two are from the wooden set from Japan. They have interesting patterns. The thing about the Japanese set is that the chopsticks are very long. I wear them on occasion but they are troublesome and I always end up poking myself during use. I really want to use a dremel tool or something to shorten them up, then they would be a joy to wear!

Even though I don’t get out much anymore, I still use these some. Plus I have them arranged in a vase on my nightstand so I can look at them and get instantly happy!

So that’s it for part 1 of my chopstick collection.  I can’t wait to show the rest! Several of them are super old and have history behind them 🙂


Trying to Find the Words

No, this post isn’t about a crossword puzzle, although the way I feel can be more confusing than one at times.

I’ve had another bad day. Not a bad bad day, but bad enough. High pain levels and wonky emotions.

I seriously wish that all the people in my life could experience,  for just enough time to really understand,  what I go through each day. I don’t wish this permanently for anyone of course, but no one realizes that simple tasks are NOT simple for me anymore.

Pain rules my life. It has been raining today, so the pain in most of my joints is even worse than usual.

I expend energy, which I barely have, on the urgent tasks and if I even manage to get through them, I am done. Sometimes for days, depending on the situation.

Then there are days when I can’t even force myself to do basic everyday things, let alone anything urgent.

Then depression from pain, lack of consistent sleep and the fact that I can no longer function normally, sets in.

It’s a vicious cycle. Stress makes my symptoms worse.

Now, I have plainly stated this to everyone in my real life, yet people continue to try to start drama and have impossibly high expectations of me.

I can’t find the magic words to say, that will make people understand. Or at least try to. Or even give a shit, some of them.

I know this isn’t a very inspiring post… at all… but if any of you are going through this, know that I’m right there with you. If you want to vent or talk about it, leave a comment.

I’m going to next post about some of the ways I cope with this issue, because this post is already getting a little long. Here is a preview of one of my coping “methods”

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Can you guess what it is? =^..^=


30 Things About My Invisible Illness You May Not Know

Invisible Illness Awareness Week

Even when we have known a person for decades there are still things we can discover about their daily life with chronic illness. And when we learn a bit more about what something is they love to hear, or what their morning may be like, it can help us be more compassionate to all of those around us who are suffering in ways we may not have noticed.

You never know what you may have in common with others around you.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Ehlers-Danlos Syndrome, Chiari Malformation, Syringomyelia

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: I was a small child

4. The biggest adjustment I’ve had to make is: Realizing that I am always going to have to struggle with everyday tasks that most people don’t even give any thought to

5. Most people assume: That there is nothing wrong with me because, unless I am using a cane or they happen to see me in my home environment,  I don’t “look” sick

6. The hardest part about mornings are: laying awake in bed for up to 3 hours on bad days, waiting for the meds to take effect so I can even move enough to sit up

7. My favorite medical TV show is: Greys Anatomy, only because I like the storyline… and before my first brain surgery,  I was in Nursing School so I have a strong desire to lose myself in the show

8. A gadget I couldn’t live without is: my cane, my ASV (breathing) machine, and my grabber

9. The hardest part about nights are: Insomnia, and being alone…

10. Each day I take 21 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have tried acupuncture but it was way too painful 😦

12. If I had to choose between an invisible illness or visible I would choose: one with a cure!

13. Regarding working and career: Those dreams are now dead and gone

14. People would be surprised to know: I used to be very successful

15. The hardest thing to accept about my new reality has been: there are so many things I love to do that I will never experience again

16. Something I never thought I could do with my illness that I did was: help others just by understanding what they are going through when the rest of their world is clueless

17. The commercials about my illness: do not exist

18. Something I really miss doing since I was diagnosed is: metal detecting, riding motorcycles,  hiking, camping, playing the guitar and keyboard… and a vast number of other things

19. It was really hard to have to give up: my marriage

20. A new hobby I have taken up since my diagnosis is: learning all I can about my medical conditions

21. If I could have one day of feeling normal again I would: do everything I can’t do anymore, as much as could possibly fit into 1 day

22. My illness has taught me: patience

23. Want to know a secret? One thing people say that gets under my skin is: God only gives us what we can handle

24. But I love it when people: are interested enough to research my conditions on their own

25. My favorite motto, scripture, quote that gets me through tough times is: I really don’t have one…

26. When someone is diagnosed I’d like to tell them: You are not alone. It feels like it a lot of the time, but those are the times when you reach out to me or someone else you know who has the same condition

27. Something that has surprised me about living with an illness is: how many different ways there are to figure out how to do simple tasks

28. The nicest thing someone did for me when I wasn’t feeling well was: helped me bathe, fed me, carried me to bed

29. I’m involved with Invisible Illness Week because: I want as many people as possible to be aware. Just because we may look just fine on the outside doesn’t mean much because on the inside we are dealing with things an average healthy person can not even begin to wrap their mind around

30. The fact that you read this makes me feel: grateful, appreciative and happy


Losing Control of Life

Today is horribly sad. It’s the last day I will ever sit on this couch… gaze out the sliding glass door… hear the whir of the dishwasher… and a million other everyday experiences I have taken for granted the past 3 years.

Isn’t it strange how I’ve never thought about any experience as possibly being the last… until now. My heart is empty and my soul is broken. There are no words to describe exactly what I’m feeling in this moment. Today is the day my life forever changes.

I am having so many emotions and thoughts go through my mind. The- what if’s, the why me, why now, how could I have changed, why didn’t I do this better or that differently, what did I do to deserve this- type of questions.

The truth is simple but not easy to understand: I will never know the answer to any of those questions.

My illnesses (at this point it doesn’t matter what they are) have taken over my life and I am so mad at them. They have taken away my hopes and my dreams, they are changing my life drastically and not in a good way.

I don’t know how to make any of this into a positive experience. There is nothing positive about having no control over what is happening to me.

I don’t want to leave this place. I don’t want to leave my soulmate, my best friend, the one who vowed to be there with me “through sickness and health”. 

I have no choice. I want to scream and beg and plead at the top of my lungs until he wraps me in his arms and tells me everything will be ok. But he won’t,  because it’s not going to be ok.


I am Scared…

So. I haven’t made a substantial post in awhile. I have not been feeling well… to the point that I can’t function. Literally.

I have been on strong pain medication for some time now and I was almost convinced that my symptoms were because of them. I went to my dr today because I can’t live like this anymore.

Here it comes again… just like before, before I was diagnosed. Tests, blood work,  referrals, try this, maybe it will help if you do this…

I’m sorry, I know this is a depressing post. There really isn’t a point to it. Maybe I just needed to vent and it came out in a post.

Maybe I’m hoping that soneone else who has Chiari Malformation and Syringomyelia might happen to read this because no one else understands what I am going through. Kat