The American Medical Community

In 1999 I went into my doctors with sharp twinging pain in my right side. I continued to go back in for almost a year. They did all kinds of tests – ultrasounds, blood, CT scans. They could never find anything. In the mean time I got sicker and sicker and I felt worse and worse. I had more pain and more often. I had fevers and threw up a lot. No one could figure me out. Finally I was in so much pain I just couldn’t walk, I had a fever of 103. I called a friend to take me to the ER and the whole ride there was hell. Every bump she went over made me feel like I would die because it made the pain worse. We got to the ER and in half an hour they knew it was my gall bladder and it was coming out the next morning. By the time I went into surgery my temp was 105 and I was delirious. It turned out to be gangrenous and I had an abscess because of it. I went home and came back 2 days later. I spent 28 days in the hospital trying to get rid of the abscess in my belly. 

Starting around 2003 I began to have different symptoms that couldn’t be easily explained. They all connected back to a low immune system though. For 3 years I went to my doctors complaining about these different symptoms. No one put it all together. They DID test me for thyroid function because many of the symptoms pointed to thyroid. But it was fairly normal. I got pregnant in 2006 and by about 5 months had a HUGE lump on the side of my neck. I talked to 3 different doctors 7 different times about it. None of them worried about it. Finally I got my allergist to listen. When he realized it had been there for 4 months (now about to have my baby) he decided to check it with an ultrasound. I had thyroid cancer. It had spread all the way down into my chest lymph nodes. I don’t know if we could have caught it earlier with an ultrasound or PET scan…. but I know it spread so far because we couldn’t figure out what was wrong for 3 years.

I honestly love a lot of doctors and nurses I have met over the years. I have become very close to them. I believe that most doctors are only in medicine to help others. To make a difference. They want to heal the sick. Please know, I am not bashing the entire medical community here, just talking about some problems I have had with it.

I have had doctors tell me my symptoms aren’t usual or that people my age don’t normally get “whatever” for most of my life. It has been frustrating to always be the weird case or the case doctors can’t figure out.

For the last 2 weeks I have been sick. I was diagnosed with a Kidney infection and was on 3 different antibiotics. They didn’t seem to be working. Yesterday I went to the ER expecting to be admitted for what my doctor thought was sepsis. I wasn’t. The blood and urine tests showed my infection was better. It hadn’t spread to my blood stream. So YAY! 

BUT…. why am I still in pain, having fevers and chills, and having several other symptoms? Again, my doctor doesn’t have any answers. One possibility has been brought up to me by a friend, one which none of the docs have mentioned yet. I am going to a urologist to try and get tested for that. Other than that, we are at a loss as to what is wrong. 

This brings up all sorts of panicky problems. It really does make me upset and frustrated when doctors tell me they don’t know what’s wrong, because of my history. The last time this happened it turned out I had metastatic cancer. I try not to panic, but it’s kind of hard not to….

Advertisements

Being sick is a funny thing.

There is something about being sick. I have several friends who have chronic illnesses – things they will never “cure” or “get over”. Things they will just deal with the rest of their lives. I have several of these chronic illnesses as well, and my surgeries and thyroid cancer have changed my body in ways that will never be repaired. I am trying some new things to control my chronic pain issues, and hopefully those will help some.

The funny thing about being sick is that no one understands it. How you are fatigued all the time no matter what you do, how you feel sick every single morning when you wake up and it takes an hour of walking around/stretching/moving/hot showers/dry heaving to be able to move your body without tons of pain. How your body which is supposed to feel 37 somehow feels 80 most days. They don’t understand what it is like to have the local ER docs and nurses recognize you when you walk in. Some people I know have NEVER been to an ER. My husband knows where the coffee, blanket warmer, vending machines, remote controls, patient belonging bags and most comfortable couch are in our ER. And even he doesn’t understand how I feel.

Even someone else with chronic health problems can’t understand your exact problems. I have a friend who has terrible terrible digestive tract health problems and I simply can’t imagine them. I can eat most of what I want and although my body will store every single bit of it, I can eat it without much trouble. Onions and eating out seem to bother me now a days, but this friend – she can’t eat anything. I mean anything without being in pain. See, even sick people have different health issues that they understand better as well.

Tonight I am staying home from a party I really wanted to go to. I haven’t gone to much this last 6 months and I was kind of excited to get out of the house. Mostly I wanted to go because my baby loves parties and we haven’t had enough lately – or been to enough. He loves to dance. He loves the lights and music. He loves seeing the other kids. He loves dressing up and the special glasses and the adults acting silly. He loves a good party. In fact, for a while in his life when he was younger everything was a party. If we were going to the zoo he called it a “zoo party”, if we had ice cream we were having an “ice cream party.” I love that he loves to party. So I wanted to take him and party.

I am home because I have been sick since the end of December. A good 2.5 weeks. I don’t know if I fatigued myself or if something is going on with me. Usually if it’s fatigue I feel better after some time resting. I take a day my hubby is off and spend most of it in bed, I spend much of the day during the next few days literally lying on the couch. I start to feel better. But I have done this and it isn’t helping. I am still sick. This week has been really bad and I know if I had gone it would be very hard on my body. Even to go sit. I have found if I continue just to keep pushing, to force myself to go have fun, to force myself to take my son out, to force myself to get everything done at home… I have found that I make it worse and I have ended up in the hospital or in bed for days a time or two because of it.

So, tonight I am home. And my whole family is at the party. Word is my son made a toast. I can’t wait to see the video.

I am resting. That’s ok, because that’s what my body needs. I am a little sad – I have always been one of those “what am I missing” people. But I am ok.

My husband’s aunt came over to get everyone for the party. She asked me why was I sick. She said she felt sorry for me. The funny thing is, I don’t know why I am sick so much. I am sick all the time with one or another of my chronic problems and honestly I am kind of tired of it. I have gotten somewhat of a handle on my migraines thanks to botox injections, but now I have new problems cropping up. I guess this is just how life is for me and I will just deal with it and continue to do my best to have a healthy lifestyle and feel better.

I have learned one important thing from all of this though.

No one truly appreciates their health until they don’t have it anymore. People treat their bodies terribly (I did) and they go running or go play volley ball with friends or go hang out until 4 am playing video games and they never realize that they have something others don’t.

Please, if you have your health, treat it well. Appreciate it. If you have a body that doesn’t hurt every minute of the day, stop and enjoy that freedom – that comfort – that “not pain” state. If you are healthy, stop – EVERY. SINGLE. DAY. – just once a day – and think of something you are thankful you can do with your body that others can’t. It is a hard thing to appreciate if you haven’t felt poorly before. I just wish I had appreciated it before – had done more with my healthy body. Had treated it better.

Defining Moments

I was getting on to post some long and probably very boring post about moms, single moms, moms of kids with special needs, winter break, and the such after a long, tedious, fit filled day. But I stopped by facebook first. Something wormed it’s way into my head and heart in just a minute or two that is now pounding to be let out onto “paper”. And so… I have the choice to let it out or deny myself decent sleep tonight. I need my sleep, I have had precious little lately.

We all have defining moments in our lives. If you stop your mind, quiet your breath and heart, and focus – really focus on who you are and where you came from, you will likely find a handful of moments. Moments that changed you, or your course in life, moments that defined you. Moments that allowed some other, later moment to happen. Some are good, some are bad. All are likely very powerful emotional memories. 

Of course these moments are very personal. Most of us would only share them with our most trusted loved ones. Maybe. These moments are so much a part of our core being we feel the need to protect them, to truly wrap ourselves around them and keep them safe – as if they could disintegrate right in front of us when exposed to the light.

I have 7 moments. 7 moments starting when I was 8 that changed my life completely. 7 moments that helped to define who I am now and who I will be in the future. 7 moments scorched into my heart and mind.

But what if these defining moments take a different shape? What if these defining moments are not moments at all, but an underlying theme that courses through your life like a river? What if instead of coming as a lightening bolt the change comes as a slow and steady undercurrent pulling you forward toward your future?

This, too, has been a way of defining my life. Yes, the lightening bolts truly stand out in my mind. The shocking, the bold, the powerful, the painful – that makes a real impression. The always coursing undercurrent? It is the force that drags me, pulls me, gives me momentum, keeps me going in a certain direction, it prevents me from becoming too stagnant. 

Today one of those undercurrents became painfully clear. Not in any sort of lightening bolt way, but in the way that anyone who has tried to stand still in a river or heavy stream can understand. That current won’t be denied. You can only stand still and hold your ground for so long. Eventually it will drag you with it, moving you forward along with everything else in it’s path. Eventually that current will wear a path in the very rock and earth it is coursing over. Eventually that current will win. Lightening bolts – they are fast and powerful and then they are over, leaving a scar perhaps, making an impression, once in a while causing great damage through fire. Water – water is a never ending constant – soft and smooth and sometimes unnoticeable. Until it is. Until it pulls you along or even under.

Today I realized for another time in my life; but strongly and suddenly; that most of the people I truly love in this life feel and think and even see the world completely differently than I do. It almost feels like we are in parallel dimensions. We both see and feel and taste and touch the same world physically, but everything else is completely different. Meanings behind things, what is or is not important, the driving forces behind our actions and decisions. Among the things we find most precious, all we have in common is each other.

One thing hits me. The realization that while I know some of what they believe, possibly a large portion of what they believe, they truly don’t know what I believe, or why, or care to know for that matter. 

It is an aloneness I have felt since I was a teenager – probably about age 11. A setting apart of myself which is truly my choice, but also necessary for my survival. Were I to go back and try to change it, were I to go back and follow along with my friends and family I would not make it through to adult hood. It would stifle and suffocate me. It would extinguish my very being. Were I to go back and stop looking at things so closely, stop trying to find reason and meaning and find what truly matters to myself, I would not have survived. I suppose everyone goes through this at some point. I suppose those I love the most have, and have found what THEY truly need as well, and that is how we find ourselves at this point. And I think it is “good” or “healthy” when someone finds what they need to survive or thrive in this world, even if it is different from what I need.

Yet, sometimes it is very lonely. Like tonight. Sometimes I don’t feel like I have many I can open up to, many I can share with, many I can truly relate to. Sometimes I feel like that river is so empty, with just me being carried along in it. I meet people along the way who feel much the way I do, in many of the same areas of life. That strengthens my heart and eases my soul for a while. When I meet those people I try to stay afloat with them for a while, to feed my core self. Eventually, though I am pulled again along a different path.

I am ok being alone in this journey. I suppose we all are in many ways. We all have to find our way, look for what is good and right and necessary in our own lives. Feed our own daemons or monsters or fairies or kind woodland creatures. 

But for tonight, I just want to find someone to float with for a while.

 

Goodbye 2012

There are quite a few quotes about moving on, moving forward, finding a new way to live. “It’s always darkest before the dawn”, “it’s always coldest in the hour before dawn”, “Just when the caterpillar thought it’s life was over, it became a butterfly”, “You are never given anything you can’t handle.” Many of these have always seemed a little contrived and I know many of them are not scientifically accurate. I am not one who clings to the hope that “next time” will be better. I take things as they come and I hope I can handle it, make it a learning situation, enjoy it if possible, find the good, hold onto the things that make me happy. 

Don’t get me wrong. I have quotes I love. The butterfly quote above fed my soul through a particularly changing and challenging time in my life. I have used the “serenity prayer” for years to get through hard times – more as a formula to find sanity in the insane than as an actual prayer. I truly love a particular quote by Maya Angelou – “The best part of life is not just surviving, but thriving with passion and compassion and humor and style and generosity and kindness.” I just feel like telling someone that it will get better doesn’t necessarily help when they are in the thick of the pain. I can be ready, prepared for the worst or the best, and take life as it comes. That is all I can do.

HOWEVER, today I read a quote that really struck a nerve with me.

“Only when night is at it’s darkest do the stars shine their brightest.”                            (seems to be unknown author?)

I have some experience with this, and I think that is why it touched me. I grew up in a fairly small town in Wyoming. OH the stars you can see there. Even now that the town has grown and added a box store and a dozen fast food places, you can still see a billion more stars than I can see in my suburb house outside of a big city. A billion. Sometimes when I go home to visit my family, If I am driving at night, I stop on the road. I stop in the middle of no where in the darkness on a dark deserted highway – no cars, no street lights or houselights. I turn off my car and I get out and look – just stare at the loveliness that is a billion upon billion stars staring back at me. Shining so bright. You can even see the Milky Way out there.

Once in a while I get a little homesick for those stars. I miss them a little. 

So, this quote speaks to me. 

This year has been a long, difficult year for me. I wasn’t sure I’d make it through intact. It’s funny, I felt better when I was in the middle of my cancer battle. It’s so hard to watch a loved one go through a devastating illness. When you are the patient you have focus, some control over your treatment plans, you know what you need to do and you find ways to do it. When it’s a loved one, you stand by helplessly, hoping they will let you do what you can, resenting it when they don’t. 

Most people who read this blog know we lost my mom in July. She couldn’t take her Early Onset Alzheimer’s anymore. It has been hard at every “big” thing. Even little things. I missed talking to her on my birthday, calling her on her’s, calling her to share our excitement over the first day of kindergarten, seeing her at fall break, calling to tell her my son is doing well in school, that they took him off his IEP and how that makes me nervous, calling her excited about him starting to read, yesterday I missed telling her about him loosing his first tooth. The list is endless. Daily I find things I wish I could talk to her about.

There have been many other things this year that have caused me stress, that have been painful, that have caused me to grieve. It has been a hard year to deal with.

I am sure lots of good things have happened this year. I have let the painful things overshadow them. That has been my choice, and I need to make a better one this year. I can look back and remember good things, I just didn’t have any joy attached to them. That needs to change.

And so, today, I am reflecting on how the stars shine the brightest when it is darkest. My stars are my family. My husband has been a rock for me. He isn’t the easiest to talk to, but he is there when I need him – driving all night when my mom was in a coma, taking care of our son when I was helping her after she got out of the hospital, getting me to the funeral safely and helping all he could with that, holding me when I cried, taking care of me when the stress overwhelmed my body and made me sick. My brothers and sisters banding together to make sure everything that needed to be taken care of got done. Being there for each other. My dad being stronger than I could be. My son – my light – keeping his smile, telling me it’s ok, loving me always and giving me something to get up every day for. It seems like a horrible burden to put on a child – being the reason for living. But he simply is right now. My cousins and aunts and uncles and grandma coming to our rescue, lending us smiles, doing laundry, taking care of kids, giving hugs, making sure my birthday was still a good one. 

These are the stars in my life, and they have truly shined brightest when I was in my darkest places. 

I know I need to be my own star too. I have learned this countless times. The light that comes from within is the most powerful and really the most needed. The light that we shine is the one that guides us and gives us comfort and reminds us where we need to be and what we need to do. It’s the light that connects us to others, that forms bonds with people. It’s the light that heals and provides hope. 

I don’t really set New Year’s resolutions. I think it’s better to make and work on long term goals always – not just at New Year. But if I were to set one this year it would be to find my own light again (heaven knows how many times I will have to learn THIS lesson). To find my own light again, to nurture it, to spread it, to help it grow. 

So, goodbye 2012. Goodbye year of pain. Goodbye things holding me back, allowing me to hurt, giving me sadness.

I choose to move on, forward, to learn but not dwell, to shine.