It’s been three months since I started this blog post and 16 months since the next part of this story. I haven’t been able to wrap my head around writing about this experience. It was the worst day of our family’s life…
Our Son was featured on CNN today enabling us to share our story with the world! We are over the moon to share is story of thanks for the NICU staff and everyone who has helped us and also as awareness for premature birth!
The story can be found here:
So I’m going to interrupt the telling of my sons story to share something that I have written for my son and everyone that worked with him in the NICU and out of the NICU over the past year. It’s hard believe he is here and he has reached the age of 1 (8 1/2 months adjusted). It’s a long poem but his story has not been short and every bit of it has gotten him here to this day. Happy Birthday little man and thank you to everyone that has helped us get to this point!
In the NICU there is no future, there is only present. It’s important for parents to adjust to this mindset of not being able to plan for their baby’s milestones or going home date because it will only lead to more and more disappointment. Easier said than done. As a project manager this was one of the toughest adjustments for me being in the NICU. I am a person that likes complete organization, to have things planned out and if anything changes all hell breaks loose. How can I not think about my baby’s future? Honestly, a tough adjustment mentally but emotionally it was easy. If I began to think about what the future held for my baby I would just start crying, so essentially it required me to create a mental block and focus on the now.
So! It’s been a good 2 months since my last post! Mostly due to vacation and a new role with my job and I just haven’t had the chance to sit down and really dedicate time to writing. We all know how time can get away from us. That brings me to what I want to focus on for today’s blog. Time. Something that becomes more and more vital to those of us with chronic illness. It’s something that just blares in our faces every day since diagnosis. Whether it’s from the time we may lose from our lives, to the time that we lose during our daily struggle of illness and our capabilities. The time struggle hits everyone in their lives at some point but it becomes a prominent focus as soon as something significant happens in anyones life whether it’s from illness, having a baby, or even the loss of someone we love. The catch is, with most of these events that brings time in to focus in our lives, they tend to be short lived. Just enough to give us a glimpse of where we are, where we wish we were, where we are willing to go and how we want to get there. These glimpses can be hopeful and show us what we have accomplished and make us proud of what we have done with our time or they can be a wake up call to get our shit together and do the things we have always wanted to do(aka the bucket list). Most of all they can be stressful and exhausting to think of which is why I think they only come so often. Unfortunately when you have a chronic illness, that will eventually take little bits of you away piece by piece, time comes into focus on a regular basis. It stares us straight in the face with ever new symptom, every new condition we add to our list and every little twinge of pain which leads us to wonder what might be next .
Time has been on my mind a lot lately. While many people view the ripe age of 32 to be young it’s been very difficult to see it that way for me over the last few months. The last two years my body has seemed to really start giving out on me more and more and at a rate more quickly then I can hardly bare to deal with. My joints are giving out, swelling is more prominent, pain all over my body and kidneys increasingly getting worse, kidney function is declining, and this is just the minor stuff. I’ve had to have multiple rounds of injections in my hips just so they don’t hurt and can move without the bone rubbing against each other as the joints are worn down. I can’t sit on the floor anymore as my knees lock up and pop occasionally not allowing me to move for 30 minutes, I can’t excercise the way I used to, I can’t even sleep in a position that doesn’t effect a certain part of my body. Exhaustion is at an all time high with my recent lack of sleep due to pain, neck and head positioning issues, and medications that keep me awake. Which brings me to the biggest concern, wake up call and fear that is being realized for me over the last few months. Something my doctors said would eventually happen and need to be corrected but when they say things like that it always seems to be so distant that I end up either ignoring that it will eventually happen or convince myself it won’t need to happen, because I’ll be fine! Can we say delusional? yea..
Sleeping on my back and right side has become the worst thing for me to do lately as it is causing all sorts of issues for me. In 2008 I had decompression C-1 Laminectomy surgery for the Chiari Malformation. For those who do not know what any of this is or who have not had a chance to read my whole blog and get caught up Chiari Malformation is a genetic structural birth defect in the cerebellum. Genetic for me as it is thought to be caused from my genetic disease Ehlers Danlos. While I won’t get into the full story of the chiari I will say it previously was causing severe damage to my daily life and function before the surgery I had in 2008. This surgery was the best thing that ever happened to me, it brought me back to life and back to my “normal”. MY Normal because it’s not the same as a healthy persons normal… The surgery is what gives those with Chiari the name “zipper head”. Doctors go in and remove a small portion of the base of the skull and half of the first vertebrae in the neck. This allows for additional room for your brain and the brain tonsils to move and not be pushed up against the spinal cord or block cerebellar fluid flow. I had immediate relief from the very risky surgery. When I had it done it was thought that this procedure was the end all cure-all for chiari and all was good. My doctor at the time said stability would be something we would watch and may need to fix 10+ years after this surgery but I was so elated with the results of the surgery all I heard were mumbles of medical jargon that resembled the noises of Charlie Browns mother.
Unfortunately things have changed in the world of chiari. Things I have had to find out on my own as I have not been keeping up to date with the latest. Several findings are showing that the procedures done back when I had the surgery may not be the fix required. Many doctors seem to have removed too much skull, which was the practice then. This is causing chiari reoccurrence to hundreds with chiari around the nation and requiring metal plates to be put into the skull to help lift and support the brain tonsils enough to remain up in the head but not take up space where fluid flow would be blocked again. It seemed like this was the road I was about to head straight for.
For the last two years I have been experiencing severe dizzy spells, and not the little head rushes you get from standing up too quickly. I have been riddled randomly with room spinning dizziness. The kind you get when you’re so drunk you can’t make the room stop spinning, just without the alcohol induction. These episodes tended to be in the morning when I wake up. I have had a few during the day at work if I am sitting in a certain position for an extended period of time. At first they were very rare. Every month or so and only lasted a few minutes. I didn’t think anything of it originally and assumed it was that I needed to eat more or increase my B12 injections. I still brought it to my doctors attention for his awareness and he did an X-ray, everything looked fine so I moved on. Then they increased slightly in frequency but significantly in length and strength earlier this year. Some lasting up to an hour making me curl up over the toilet ready to vomit as I could not tolerate the spinning. Sitting up didn’t help but it didn’t hurt. Lying down increased the spinning and closing my eyes did nothing as I could still feel everything in my head spinning. On top of this my head would feel as if it was going to explode. The head pressure was unbearable I took a diazepam as instructed by my doctor and it did nothing but make me loopy. Eventually the spinning would dissipate down gradually to where I could get up and walk around without falling and once it stopped I was left feel overall ill the remainder of the day. All my energy and strength was being used to fight the spinning which was just no use as it’s impossible to win.
A few months ago one of the most severe episodes hit me. I wrote about it when it happened but for those that don’t know the story I’ll give you the quick version. As soon as my alarm went off in the morning I opened my eyes to spinning and pressure. I tried to get up and knocked everything off the side table. I laid back in bed, told my husband I would be fine and he headed to work. I ended up discovered on my driveway dizzy and disoriented and brought to the hospital via ambulance (side note: getting those bills in the mail is fun! *sarcasm*). Since then I have been in and out with my chiari doctor. As I mentioned before it was originally thought I would need this metal plate after our original discussions. He wanted me to have an MRI but not a regular MRI this one I would need to be sitting up. Cleverly called an “Upright MRI”. This new form of imaging is now being used for many with chiari as it gives doctors a better look of how the brain and tonsils are sitting on a regular basis while you are up and about. I thought this would be great! Way easier than lying down in an MRI machine! I can just sit up like I’m in a chair! HAH! Nope. It was so much more difficult. For one, you can’t fall asleep. You have to stay awake and focused to keep your head from moving. You also have to have very shallow breathes and cannot swallow. Extremely difficult. I found afterwards my neck and head hurt so much more after having to keep it in an upright position for 45 minutes. Definitely prefer the regular MRI but I digress. Once my doctor reviewed the films his initial thinking of the metal plate changed. I knew something wasn’t right when he said he wanted to send the imaging to the chiari institute to confirm. That’s what he did the last time I needed surgery…confirmed with the chiari institute. After they reviewed they agreed but wanted more definitive imaging. This next MRI would be another upright MRI but I would need to place my head in specific positions. I went back to the same place and asked every person there about the positions of the head I would need to do and they all said “no, we are just going lower down the cervical spine”. I followed this with an “are you sure? I was told the chiari institute requested this” and they assured me that was not what I would be doing. One week later, as it took them that long to get my doctor who works blocks away the images he texts me furiously as (of course) they did not do the imaging correctly. Here I am thinking “great! Just what I need more radiation, I get to do a 3rd MRI in 2 months!”. Ugh. My doctor told me this was not the case that MRI radiation is not harmful radiation like you receive in CT or X-ray while I thought to myself “yea.. YET! 10 years from now there will be some study saying it’s the worst radiation you can get!” I hope I’m wrong.
So now we play the waiting game. The MRI was today. My doctor will receive the films and send them to the institute. What will they be looking for? Instability and chiari reoccurrence. They believe that with the removal of my vertebrae my neck stability is well, not stable. This in turn is causing my symptoms which will only continue to get worse and/or cause permanent damage if not corrected. How do they correct it? This is the scary part. The part I just don’t want to believe I will every need and cannot wrap my head (no pun intended) around ever having this done or living this way. The only fix is a fusion. Rods will be placed in my neck as they fuse my skull to my neck. This would forever eliminate all movement in my neck.
I just cannot deal with this. I’m in total denial and refuse to move to the next stage of grief. I just keep hoping to myself that they will come back and say “you still have several years until you need it, Oh! and there’s new research ongoing so there will be a better option by then!”. Wishful thinking I am sure but I can dream. Meanwhile my body tells me otherwise. Just doing the MRI today and hyper-extending my neck up and down made my symptoms increase and pain as well. It pretty much gives me my answer. Until I get those results I was basque in the delusion that I am fine, but in the back of my head (LITERALLY) I am not, and I know my time is just about up. My road of free movement is quickly coming to an end and the disability phase of my disease is hitting me like a ton of bricks. I thought maybe I could handle it. I’ve always been strong and taken on everything I have had to deal with medically, at least on the outside, but this? The strength is just not there. I’m grasping for extra time for things to remain the way they are and not progress any further. Time is dominating me in this staring contest and I’m just about to blink.
~Just a Regular Sick Girl
Today was not a good day. Well, it was a fine day actually. It’s sunny outside and warm and summer is here which makes it a pretty beautiful day, but I woke up this morning knowing it would be a bit of a struggle. The last few days I haven’t been on my game. I have been exhausted..not feeling up to doing much, not focused, stomach issues making me drag and kidney pain a little worse than average. I woke up this morning with swelling so bad I could barely bend my fingers. I put on 4 pounds in 24 hours just from swelling. Possible from poor diet choices as well, I mean let’s face it when we don’t feel great, our “go to” can often be the unhealthy foods we aren’t supposed to be eating. Who can resist comfort foods in a time when we aren’t feeling comfortable after all. For me, sign me up anytime for chips and queso, pasta and ice cream. It’s all I need to get by, forever.
In the world of doctors and patients trust is a key component when it comes to diagnosis, treatment, and overall care. However, trust is a two way street. The doctor must trust the patient and the patient needs to trust the doctor. This is a relationship that can take time to form and develop, but what happens when you are working with a medical system that trains it’s doctors to never trust their patients? That is the system we are working in and it has created a monster of a medical industry filled with millions of un happy, mistreated patients, mis diagnosed patients, and doctors who believe they know all and are god’s gift to the world. We have entered an era of medical practice where the patient is no longer valued as a human being, but as a liar seeking attention, or someone who has something to hide, basically an individual that does not really need medical attention unless they present symptoms of death, and even then they probably would doubt the patient!
Wow, what a week this has been. It’s always funny to me how life never fails to let you get comfortable and then pull the rug from underneath you. Just when I thought I had reached a good place and gotten my disease under control (to my best ability) I find myself in an ambulance being rushed to the hospital. It was a rough situation and one that looks like it will be putting me through quite a roller coaster for the next few months.
I ask myself this question far too frequently. Maybe it’s because when I first started having symptoms 10-15 years ago I was usually told it was all in my head. That was not all I was told… I would have people tell me I was acting sick to get attention too! Because.. That’s logical… Apparently people think that sick folk just want to lie around in bed all day. Does that really sound appealing to anyone? After about 24 hour you start getting antsy and need to get out of the house before you feel like you might actually go stir crazy! Trust me on this. But it wasn’t just the general population. It is also the doctors. Why do you think we need to have second or third opinions just to get a proper diagnosis? Doctors just don’t believe it if they cannot see it. Unfortunately often times when I get a new symptom (even with the doctors knowledge of my genetic diseases) they doubt it. If it doesn’t sound like a big deal to them they shrug it off or attribute it to medications or stress and the like. More often than not these symptoms become much more than anyone originally thought. I don’t think anyone really understands how insanely frustrating this is. To be second guessed at every appointment. Especially if you’re a woman, seeing a male doctor ( look for future blog post on this subject!). Females are often highly regarded as emotionally unstable, illogical, overly dramatic, no pain tolerance, etc. This constant treatment of doubt and questionability not only makes a spoonies life more exhausting and stressful than it already is but it can also hurt our chances of a timely diagnosis.
One of the most exciting experiences of being chronically ill and having to see the doctor all the time is making appointments! Are you getting the sarcastic tone? I dream of getting to sit on the phone on hold frequently while the doctors’ staff or their nurses tell me he/she will be unavailable for weeks..maybe months! It never made sense to me when first dealing with my diseases why I could never get an appointment in the actual week or days I needed the appointments to be! Why could I not see the doctor when I was not feeling well or when I was presenting with the symptoms that could help the doctor diagnose me. Instead, I would have to wait, which would result in an un eventful doctors appointment that entailed me doing my best to explain what I was going through while the doctor would look at me puzzled and state “well, I’m not sure what you were experiencing but since the symptom is no longer occurring let’s just wait and see if it comes back, then call me.”. “FREAKIN GREAT!” I would think to myself. In many cases, said symptom would return, and I would immediately call the doctor to be told “He’s not available until next week at the earliest” or “he’s away at a conference” or “She’s on vacation”. Sigh… “Why can’t I ever get in when I’m actually sick?!” So frustrating right?