2

Post-Op Appointment

Disclaimer:  This really doesn’t have anything to do with my normal blog-like posts however, I have chosen to write this in my blog simply because I have so many friends and family that want updates and there is SO much information that it can’t be addressed in a simple text; so please bear with me.
Now that I am cohesive enough, I was eager to find out what really happened during my surgery.  Here is what I learned; I was born with a defect in my nasal cavity.  There are three tubes that sit on top of each other where fluid and mucus moves through and is connected to the eustachian tubes.  The middle tube has a hole at the top of it that allows the fluids and mucus to flow properly through the eustachian tubes, but I was born with two holes.  What that means is I am recycling the bacteria and it never works its way out of the sinuses.  I made a joke with Dr. Lewis that I knew I was secretly a hoarder at heart.  This would also explain all my issues when I was younger because the eustachian tubes were not getting circulation, so the ear drums were in a constant state of retraction.  The other complication with this middle tube was its size.  She had to remove some of the tube to make it smaller in width and used some of the excess tissue to block the extra hole.  What this larger tube caused was issues also with my adenoids becoming enlarged, again because it was holding all the bacteria and infection.  Because the adenoids were so inflamed, it caused my septum to become deviated so after removing the adenoids she corrected the septum.  Her concern is that the septum may not stay corrected because my nose is so small (ha! my little brother teasing me about my big nose all those years is now officially disproven), and while she has made more room in there, over time I will probably see another sinus infection or cold and that causes swelling.  Hopefully by maintaining through my ENT and allergist, we can prevent my septum from moving again!
The cyst and warts that were removed from my throat and cheek sinus cavity are not cancerous; however, I do need to be cautious of the warts because after having them “typed”, they are in the cancer family so I will need yearly check ups, especially because my white blood count is a little on the high side already. She is mildly concerned about the blood count, so I am going for further blood work with a little more in-depth look at things.
Now, here’s the “not so good” news…….
After spending 2.5 hours today with Dr. Lewis trying to remove the mucus and blood that has collected over the past week from the surgery, there is a very strong possibility I will be brought back into surgery tomorrow afternoon.  It was a long appointment and was rather painful and overwhelming, but basically I have developed a hematoma. Part of the problem is she is unable to reach the hematoma fully because of all the swelling.  At this stage in the healing process, I should not have this much swelling; although she did say that she somewhat expected my healing process to be a little slower due to the Fibromyalgia and Chronic Fatigue Syndrome.  She was able to stick a needle into part of the hematoma and suck out some of the blood but not enough.  Sounds gross, right?  Try listening to it and then feeling it!  SO GROSS!!!!!  Her concern is that the hematoma will start to congeal making it a breeding ground for further infection, so she realizes she is being a little aggressive; however, she is also taking my medical past experiences into consideration.  My body likes to hide infections and other problems. The game plan is to increase the Prednisone today/tonight and use more Afrin to see if we can get more of the swelling down and return tomorrow morning at 8:30am.  If the swelling has reduced, it could be a huge help in her being able to fully get to the hematoma, but there is still the possibility the hematoma is too large and too deep to get without surgery again.
So, I’m feeling a little tired and overwhelmed and quite honestly, disheartened.  I do realize I have an excellent ENT who is treating me based on ME and not the “typical”….she did tell me on a few different occasions that I was special…OK she said I was a special “case”, but I’m going to choose to hear the first option!  🙂   Anyway, if I have to be brought back into surgery, it will happen tomorrow afternoon, so I will try to update you as soon as I possibly can.
I’m trying so hard to recognize the positives, but my emotions are betraying me.  I really am grateful for Dr. Lewis and her aggressiveness in making sure I don’t suffer anymore than necessary; and I really am grateful we are still moving in a forward direction…so much has already been corrected through this surgery; and I really am grateful for the relief I have felt over these last two days (let’s face it, the first 5 days SUCKED out loud); I can’t tell you how grateful I am to my family and my friends that have watched over me so sweetly over the past few years; words can never describe just how much love I feel from those who have chosen to get to know me despite my chronic illness; so why do I want to break down crying?  UGH!  I feel like such a wimp.  I know how stupid that sounds out loud, but I can’t help it. I feel defeated; I feel disheartened; I feel overwhelmed. I feel like every time someone asks me how I am doing, or how I am feeling, I can’t just say “GREAT”!  I AM DOING GREAT!
One day….
0

…to be continued

I spent another day at the doctor’s office today, specifically my ENT.  We went over my CAT scan, and not to my surprise, there wasn’t anything apparent that would be causing the pain in my head or the dizziness I’ve been suffering from off and on for the past two years. I asked my husband to come with me this time because I am just feeling frustrated, and I guess I was hoping that if I had him there the doctors wouldn’t think I’m making everything up.  Half the time I feel like I’m going crazy, and I just want some answers.

The end result to today’s visit:

“Rachel, we have done everything we can think of to do for you with medications and natural therapies.  We have some weird results from your hearing tests, CAT Scan and cultures, but they don’t all necessarily add up.  The next option is to schedule you for surgery.  We see that the adenoids are inflamed and large, but they don’t really show signs of blocking your passages.  We know you have retracted eardrums, which could explain the dizziness you feel but not necessarily the pain.  You do have some “gray” area’s that the CAT scan doesn’t give much insight to for us, but most likely you have buildup in there that we won’t be able to get to without surgery.  Finally, we see a slight deviated septum, and this could be causing the lack of airflow.  So, we know we need to put tubes in your ears; we’ll probably want to remove those adenoids and possibly put medical balloons in your sinus passages.  Once we are in there, we can get a clearer picture but because we can’t definitively say what is wrong with you, we can’t definitively say this surgery will fix it, either.”

Awesome.

I’m waiting for a call back from the surgical medical assistant to tell me if they want to “squeeze” me in on the 19th or the 26th.  On the one hand I’m trying not to get my hopes up that this will be my cure all, but on the other hand, I really want this to be my cure all.  I want to have some resemblance of a normal life.  I want to spend time with my husband without feeling like I’m such a burden and an inconvenience.  It’s hard to explain to others looking in how hard this has been on him, on us, on our marriage.  He so desperately wants to help, knowing there isn’t anything he can do and I can see the internal struggle he goes through on a daily basis.  On the other hand, he has to then contend with my mood swings because the pain also takes its toll on me.  I can’t decide if I want to scream and hit something because I’m so fed up or if I just want to curl up in a ball and cry hysterically.  Can you imagine watching your loved one go through that and know there isn’t a damn thing you can do to make him/her feel better?  Eventually you have to get numb to it or you’ll go crazy!  And even though I understand all this and can see all of this, I can’t seem to avoid my own emotional swings so he doesn’t have to endure so much.  As much as he wants to take away my suffering, I, likewise, want to take away his own suffering….and somewhere in the middle of all this, my poor son just sits and watches, trying to make jokes and lighten my mood as much as he can.

Don’t get me wrong; I haven’t been like this every single day for the past two years, but the reprieve between the episodes has become fewer and fewer.  I try to stay strong; I try to rely on my faith and trust that the Lord has His reasons for all of this, but I am human….I am starting to question.  Am I just not getting the message and that’s why there haven’t been clear, definitive answers/results?  Am I not praying hard enough?  Am I allowing my doubts to overshadow my faith?  I guess if I had the answers to those questions, I wouldn’t still need this trial….?

4

Don’t forget to breath!

I was in my Pilates class tonight trying to release some of the tension and stress that has come into my life recently; as we went through the movements, each one gradually got harder and harder.  I was focusing so hard on my form and engaging the correct muscles that I didn’t even notice my trainer looking down at my bright, red face with veins popping out of my forehead.  Casually, as if this wasn’t an uncommon phrase for her, she says, “Rach, don’t forget to breath!”

What a concept!  Do you ever find yourself concentrating so hard on staying strong, or handling stressful situations properly that you don’t realize you’ve stopped breathing?  This has been my habit for quite some time, and it took my Pilates instructor to wake me up.  Now the hard part is how do I do it?  Sometimes it feels more painful to breath, almost like when you’ve run too long and get that burning in your lungs and the cramp in your side.  When that happens breathing is so difficult!  Well, gee, Rach – maybe that’s a darn good sign you have completely pushed yourself too hard!  I feel like that song that makes fun of stupid things people say and his tag line is “Here’s your sign”.  That’s me right now.

So…..how do I take a step back, relax and breath?  What are some tricks you use in your daily life to force yourself to take it down a notch?  What if your stressors are just a part of life and you can’t get rid of them because they are a necessity, i.e. demanding job?  I’ve also come to realize that even good “things” are a form of stress because it’s changing me and it seems like my body can’t tell the difference between a good stress and a bad stress; it just sees it as stress and then it makes my fibromyalgia start to spiral out of control.  UGH!

Does it ever end?  Do you ever find the right balance for your chronic illness?  I would love to know how you cope and what you do to make your life meaningful and your days successful.  In the meantime, I will reflect some more and come back with my conclusions.

2

I’m an Oxymoron

It’s been such an odd day today, and I’m still not quite sure that I have fully processed all that is coming to light in my mind; bare with me as I try to mutter through my brain to put it down on paper.

We had a special conference for all the women today at church, and one of the talks given really opened my eyes to my own personality.  I won’t mention her name in case she ends up reading my blog (and because I haven’t asked her in advance), but she was talking about some of the reasons we sometimes shy away from visiting with the ladies in our church that have been assigned to us.  There was a lot of feedback and answers given by the other ladies as to what made them avoid visiting their ladies.  I raised my hand and mentioned that for me it really had more to do with my own shyness; it was awkward for me to call up someone I don’t really know very well without making it seem like the only reason I was reaching out to her was because I was asked.  After the conference was over, I had a friend come up to me and tell me she was surprised to hear me say that I was shy.  Just that one statement got me to really thinking.

My whole life I’ve been perceived as outgoing and extroverted, and up until recently, I probably would have agreed with you; however this past month that I have been feeling stronger and healthier, I am finding I am much more aware of my feelings, emotions and thoughts.  I am having to push myself to do things that are uncomfortable, whereas in the past, I knew they were uncomfortable but I just pressed forward or worked around it.  I’m not sure why all of the sudden I am finding it hard for me to just “do it”; for example, almost within the first week of feeling better, I decided that I was going to jump at the chance to get myself back into the gym so I can strengthen my body before another flare.  In my mind, I’m thinking if I can make my body stronger, maybe I can work through the Fibro flares without it making me bedridden.  In the past, I had a personal trainer that I worked with 3 times a week, but because I still struggle with sleep issues, I knew it wouldn’t be quite that easy this time around.  I couldn’t afford to oversleep an appointment, so I decided I had to join a gym.

Just walking into the gym was really challenging for me, but what I am finding even more challenging and uncomfortable is walking into the gym everyday….alone….. feeling as if all eyes are on me.  I hate having people look at me, but yet, I enjoy singing and performing in front of people.  Irony, right?  How can I enjoy singing and performing but yet I don’t want people to look at me?

I have a job where I have to call strangers every day and try to sell them IT Management Software, but I find it difficult to pick up the phone to call a lady I don’t know who goes to my church and try to get to know her.  Can you smell the irony, yet?

I think that I have always been an oxymoron but I found ways to avoid feeling the shyness, like hiring a personal trainer instead of joining the gym.  I enjoy people but at the same time, I have a hard time being around too many people at once.  I love hosting parties, especially fun dinner parties, but I won’t go to a “girl’s night out” because there are too many ladies that attend and I instantly get that “ants in my pants” feeling.   Maybe my idiosyncrasy is what makes others look at me and see an outgoing, extroverted individual because I never acknowledged my shyness in the past.

There is so much more going on inside my head right now, but I can’t make much sense of it so I think I’ll stop with what I’ve been able to decipher thus far and hope I can come back later with more enlightenment.  Please feel free to respond if you think you can shed some light on my quirkiness!  🙂