Dead but still Breathing

Everyone knows that change is hard. When I went back to work and gave up playing tennis, it took forever to adjust to the role of working mom, but I did it. I was a working mom with a set routine, the house was running the kids were fine and Oren and I were okay, or so I thought.

No one prepares you for the changes you'll have to make after a major illness. Once I was able to sit up and walk a straight line (which was a major accomplishment) I was really excited to be able to just get a load of laundry done. I was really surprised how happy I was at the little things I could get done during my recuperation.  Of course I had Mom here, so if I had over done it, she was there to back me up.Some days the only thing I had the strength for was taking a bath. Then it was back to bed. Other days, I could do more. Anyway, I took all my little accomplishments and put them together as my little basket of goodies....something to be proud of...I could do it!!! Then it was time for Mom to go home.  She had, after all, been away for two months tending to me and my family.  She needed to get back to her life and I was better. She left and I was alone. Unable to drive, stuck in the house with a lot of time to think....probably too much time.

It was then that I realized that even though I survived, a part of me had died.  I wasn't sure if I'd ever get that part back. I was different.  I wasn't the working mom any longer. I was a sick, stuck at home mom who couldn't even hug her children until they showered after school.  I couldn't go out for fear of catching something because my immune system was so low. So I sat all day, mostly sleeping and playing on facebook, waiting for the kids to get home.....but this was the drill for the longest time.....especially for the two youngest...as soon as they got home, it was straight to the laundry room where they stripped off all their clothes and shoes.  They then proceeded to take showers, put on fresh clothing and then they could come meet me in my bed and tell me about their day.  You see, I didn't know this, but virus' such as H1N1 can live on your clothes for long periods.....a kid coughs on your child's clothing, the germs stay active on the clothes!!! Scary!!

So there I was, stuck at home, too sick to do anything, couldn't drive, couldn't go anywhere for fear of catching anything and taking every precaution possible and the H1N1 starts running through the Lafayette High football team. The numerous doctors I had seen by this time, including the infectious disease doctor said it was imperative that I NOT get the H1N1 but that my system could not handle the vaccine and a bout of the flu could kill me....great!! So we vaccinated the young ones for the flu and started my oldest football player on Tamiflu even though they usually don't do that for preventative measures. It was extremely scary. He got it anyway and had to stay away from me. So now, not only was I stuck in my house, in the evenings, I was stuck in my room. My sweet husband would Lysol everything in the house.....but I'm losing track of what I wanted to tell you.....
 
It was during this month of not being able to drive and being alone, that I realized that part of me died. I could no longer play tennis and I was no longer a working mom.  My head hurt so badly and my memory was so bad that I couldn't even remember what a stay at home mom's responsibilities were.  It was a very sad time of my life.  I kept thinking, if I could just get back to work, I could get back to me. I even talked to my boss about working at home doing.......but I couldn't remember the word I was trying to tell him, so he decided that maybe I just needed to get better and not worry about work.  But it plagued me.  I HAD to get back to work. It was the only way to get back to ME. I didn't like this new me. The new me was anxious and scared all the time.  I couldn't make any decisions without consulting Oren. That's not me. I was sooo different.  My doctor wanted me to wait til the first of the year to even attempt to go back to work, but I was stubborn, I had to go back.   So at the end of October, when I was able to drive, I went back to work. Slow at first. Just a few hours a day, every other day. I did that for a couple of weeks and it was back to full time.  Surely this would help me get back to myself.....the only problem was my doctor was right, I really wasn't physically or emotionally ready to go back to work.  Everyday I would cry all the way home.  We needed me to work, needed the money, but it was killing me. On top of the stress of working, I had a problem remembering that I was responsible for feeding my family.  I would get home from work and we would sit around resting and about 7 pm one of the kids would say, "What's for dinner?".  Then I would realize, crap, I'm suppose to take care of that!!



I remember in December, Oren surprised me and took me to New Orleans for the weekend. I was so excited about going, but when we got there, I was paralyzed with fear and anxiety! I was so scared, we couldn't leave the loft for dinner...I would never be me....I would always be this anxious, freaky, scared little girl. Thank God Oren is such a good man. I wouldn't have made it without him.

Then a new friend who deals with people with long illnesses, said that going through a sickness like this is just like going through a death. You have to mourn and go through the grieving process.  I got lots of really good advice from so many good friends but none as good as the advice I received from Fr. Blessing. 

I went to meet with him hoping that he could give me some in-site as to how to get back to myself!! So I told him the whole story and ended with "I just want to be me again".  His response blew me away. He said maybe you're not suppose to be the person you were before.....maybe this is God's way of giving you a chance to recreate yourself......hmmmmm. He stated that Oren and I had always agreed I'd stay home with the children, but I went back to work. While at work, I had a hard time coping with not being at home, when I finally resigned my self that I was gonna be a working mom, I got sick and had to be off work.  When I went back, I had a hard time adjusting, crying all the time, my boss and I were not getting along, then I got laid off. Maybe I wasn't suppose to be at work and I was missing all the hints God was giving me. He said some people have to be hit with a ton of bricks before they learn the lesson.  Apparently, that's me!!!

Oren says he likes the new me better than the old me. He says it makes him feel good to feel needed. So I've decided that I'm gonna follow Fr. Blessing's advice and use this time to recreate myself. Maybe that's the good that's come out of all of this. It's kind of exciting......wonder who I'll be???

Flashbacks & Headaches

If anyone would have told me that an infection from a tooth could do this much damage for this long, I never would have believed it.

The worse part of all of this is the never ending headache. I open my eyes every morning to a piercing headache on the top of my head at the crown. It lasts all day long and is there when I go to bed at night. I have had every test known to man including a nuclear scan of my entire body....nothing. No explanation. All we can do is treat the symptoms. The more activity I do, the worse it becomes. So, each day I have to decide if I want to play tennis, can I bare the horrible headache that will follow...some days you just have to, otherwise the illness wins. I don't like losing.

I was also not prepared for the memory loss. It saddens me how much of it I've lost. Even when I'm reminded of something, it's quickly lost again. It's like there's only so much room in the filing system in my brain. Fortunately, I have wonderful friends and family who are willing to remind me of the important items I need to remember...the rest, oh well.

Flashbacks......I wasn't told until recently that when you suffer an illness as severe as I had, you tend to get post traumatic stress disorder. That was a real shocker! It wasn't until I got laid off in March and was home more often that the memories of being sick started flooding back. I'm talking about the months and days leading up to my being hospitalized. Now that I'm remembering, I'm glad I had forgotten it!!

One example is the bathtub. Out of the blue one night while taking a bath, I remembered how awful I felt in July when I took a bath. I love my baths. Even the subtle movement of the water was enough to make my head feel so weird. I use the word weird, because there is no other word. Dizzy isn't correct. It's like it would make my brain want to pop. The problem with these memories is that you don't just get the memories, you get the scary, awful feelings along with them. The first time it happened I thought I had lost my mind.

Then there is that fateful Monday. That day when I couldn't go to work and I kept passing out. I remember talking to my sister in law telling her how strange I was feeling and that something was really wrong, but this was early in the morning, before things got out of hand. Around lunch I made it to the bathroom and passed out. Every time I tried to sit up, I would pass out. I remember lying on the floor thinking that I was going to die on the bathroom floor and that no one would find me til that evening. I had my cell phone, but I couldn't dial. Why? I tried to text, but I couldn't! Would I die? Was this how I was suppose to go? I wouldn't get to tell my children goodbye!!! Would they know how much I loved them? Would they remember me? I remember worrying about Nick, he wouldn't be able to deal with this...and Alex, so tenderhearted...how would he survive!! And Bella, my wonderful, unique girl, I wouldn't get to see her grow up. I was dying...God please help me!!

Then I was at Lafayette General. Oren's talking, it's not right.....I'm trying to speak....can't you hear me....can't you see that I'm trying to talk!!!Anyone!!! It was so frustrating.....my brain not processing this. My mouth not working!!! I'm scared.

Its Tuesday. I'm home. My head's going to explode. Can brain matter come out of your ears. Harvette is here. She's putting heat on my neck, ice on my head. She has medicine for me. I'm drifting in and out. I can hear her and Oren whispering. What are they saying???? Doesn't matter.....so glad she's here. I want my Daddy!! Why can't he be here.....Where's Mom.....I need Melissa!!! Somebody please help me!!!

Wednesday. I'm in Lourdes hallway waiting for spinal tap. It's so loud. Doesn't anyone see me? Can't they tell I'm in pain. Oh God, please help me...my head hurts so bad.....I think they forgot me....I want my Daddy!! How can they leave me here. I'm getting my spinal tap, someone said MRI....what??? No, No I can't do that! My head hurts too much!! I cannot take the knocking of the MRI, no one gave me pain meds. Please don't make me do this. A shot, thank you Jesus. It's helped. I'm sleepy.

These are the things I remember. I'm crying as I type it. It was so scary. When the memories come, so do the emotions....I wouldn't wish this on anyone.

Miracle

I cannot begin to say how wonderful my doctor, Dr. Ronald Jenkins was to me. He kept me in his office until Our Lady of Lourdes had a bed ready for me so I wouldn't have to go through admitting or experience the horrors of the ER again. My mother and Oren waited with me and when a bed was ready, I was brought over to Lourdes. The treatment I received there was beyond compare!!! Everyone including the ladies bringing my meals would ask me if I needed anything before they left. But back to that day.....

I arrived at the hospital and was immediately surrounded by scores of people in bio-suits. Needless to say, it was very frighting. A plastic face mask was put on me as well and people were drawing blood from both arms. Before I could even take everything in, I was whisked away for testing, first chest x-ray, then placed in the hallway next to the transportation station to await my spinal tap. My head was about to explode and in the rush of everything no one thought to give me any pain medication. I could tolerate no sound at all, so the loudspeaker at the transport station was more than I could bare. I cannot say how long I was in that hallway, but it seemed like forever. I think they forgot me because after a long time a nurse, seeing me crying and covering my ears, stopped to ask what I was waiting for...she helped get me where I needed to be. The spinal tap wasn't that bad, but they started talking about doing an MRI after and I still had no pain meds so by this point I lost it. I cried and cried. The nurse was able to get something for my head and the MRI tech got me some ear plugs and towels to try to muffle the sound. The next few days were a blur. I went into the hospital on August 5th.

I was put on the antibiotic Zyvox, which is the one they give patients who have the flesh eating bacteria. I can tell you it's hell on your veins. After each dose, they would have to find a new vein in my opposite arm because it was extremely painful. I got an even worse headache after the spinal tap and had to have a blood patch after the third day in the hospital. It wasn't until the third day that I could sit up or stand. The hospital staff was worried because I wasn't eating but I just still felt so awful. I should say that from the time the tooth was extracted to the day I was put into the hospital my jaw was still open and exposed, it never healed or closed up. On the fourth or fifth day Sister Helen came to see me. She told me that sometimes God works through her and allows her the power to heal. She asked if she could lay her hands on me. I have to say, at this point, I was willing to try anything to feel better. Sister Helen put her small hands on both sides of my jaw and began to pray. As she began, her hands became warmer and warmer until they were just hot!! Then she opened her eyes, smiled at me, thanked me and left. The next morning I was eating breakfast and it felt like something was stuck in the extraction site. I called Mom over to look and see what it was. She looked, the backed up with the most astonished look on her face. There was nothing in the hole, it was completely closed up and healed! It was a true miracle. After this point, I turned a corner and began to get better.

The doctor was right, all the test came back negative except the MRI of my brain which showed the swelling on the right side indicating the meningitis. My physical therapist said that the weird, heavy feeling in the back of my head was a classic indicator of meningitis. She was very surprised that the other hospital hadn't suspected it.

All total, I spent 10 days at Lourdes. I know friends and family came to see me, but I really don't remember. That's been the hardest thing about this whole thing. I've lost so much memory. I have virtually no short term memory and anyone or anything that happened a year or so before I got sick, I don't remember. All in all, I was lucky. Dr. Jenkins told Oren if we had waited a couple more days, the infection would have gotten to my organs and we wouldn't have had such a good outcome.

It was really a hard year for the whole family. The kids had to start school while I was in the hospital. I hadn't finished my shopping for school, so my sweet in-laws took care of it. Thinking about it even now makes me cry. My poor, sweet children still watch me like any minute I'm gonna break.

My Mom stayed two months with me. It was a month after I left the hospital before I could sit at the table to eat. The second month I was still walking into walls and hitting my head on the door frames. It was three months before I could drive. I was so grateful to all my family and friends who did so much for me while I was recovering. I didn't have to worry about cooking or anything. The love poured on our family was overwhelming.

We are so blessed. I survived, I'm here!!

The Beginning

The beginning was benign. I had never had any issues with my teeth as an adult. As a child, I had many fillings, but nothing as an adult. In March 2009, I started having an ache in my right back molar. Just a small pain, nothing too bad. It didn't take long before I had to go to my dentist, there was no more ignoring the pain. My Dentist was out, so I had to see his partner. Turns out a filling had fallen out. "How long had the filling been missing?", the dentist asked me. I had no idea. All I could tell him was that it had been bothering me for a few weeks. He put me on antibiotics, talked about root canals, extractions, etc....I only halfway listened....see, we're the one's Obama keeps talking about. We're the working poor!! We have no dental insurance!!! We're barely making ends meet. There is no money for a root canal and crown. So I let the dentist fill the tooth, check out and go on with my day. I'm a busy working mom. I have no time for a tooth issue nor do I have the money to deal with it. That night, when the medication wears off, the pain returns. Not as badly, but it's there. I don't say anything to my husband, Oren. He has enough on his plate and I really don't want to make him stressed out. I deal with the pain for a few more weeks. Finally, unable to handle the pain any longer, I call my dentist. Fortunately, he is in the office. He checks out the tooth, the filling has fallen out again. He puts in a sedative filling and talks about a root canal. I start crying. Now I've done it. I have to tell him our financial situation. A stranger. Embarrassing. I tell him I want to pull it. My teeth are too beautiful to pull he says. He want to try to save it. He tells me he understands and I can split the payments up into small increments for as long as I need to and he'll make me a deal. He asks if money is why I hadn't brought my son in for his filling. Ashamed, I had to admit it. He tells me to bring both children in and he will take care of whatever is going on with them. Not to worry!

The tooth continues to hurt. We start the root canal but the tooth reinfects before we can finish. Another round of antibiotics. It was the end of May before we finished the root canal. I continued on antibiotics as a preventative measure. Over the course of the summer, I could only eat soft foods and only little amounts of it. The tooth continued to hurt more and more as the weeks went on. I lost so much weight. Between the stress of work, our financial situation and the pain, I became very, very gaunt (as my mother calls me).

Now, It's important to note here that in the past I have worked for doctors and dentists so I know how important it is to tell your doctor when you have dental issues. But the first week of July, I went to see my internist for my semi annual visit and didn't even mention it. It never occurred to me. This should have been my first clue that something was going wrong. Later that week I go back to my dentist. Together we decide that since I'm still in so much pain, that maybe the tooth is fractured in such a way that it is not visible on the x-ray. We decide to extract. Of course, the extraction wasn't easy. I couldn't get numb, it took numerousinjections to get me numb, I had an extra, deformed root that broke off in my jaw, he had to dig it out, etc...finally the tooth was out. I was so numb that when I went to bed that night, I still couldn't feel my face. I took my meds including my birth control and went to sleep. The next afternoon I remembered that I was supposed to start rinsing my mouth. I rinse and my birth control pill comes out. It had lodged itself into the extraction site and because I was so numb, I couldn't feel it. It was this small, crazy little thing that sent everything cascading downward. Because the pill was in the extraction site, the blood clot that was suppose to form couldn't, therefore, I developed a dry socket. One so dry, you could see my jaw bone! Now, anyone who has had a dry socket knows how painful this is. Everyday for a week I had to go to the dentist and he would pack the hole with gauze soaked in clove oil. It hurt like hell but made it feel so much better!!

About three or four days into the packing, my head started feeling really weird!! I couldn't describe it!! I wasn't dizzy, but I wasn't right either. At first, I thought I was reacting to the pain medication. I tried to not take it, but the pain was just unbearable!! My ears felt like they were going to burst. The smallest sound would reverberate through my head. I was still working and trying to take my dance classes (ballet) but something was really wrong with my head! I tried to tell my dentist, but I really couldn't explain it well. Finally the fourth week of July, I went to see my ENT. Having a medical background and a computer, my first words to him were "how do you know when you're septic?". He told me I'd be so much sicker if I was septic. I couldn't imagine feeling any sicker than I was at that moment and told him so. He told me I just had been having this infection so long that I needed to rest, take the week off, stay in bed, no tennis, no dance, just rest and he upped my antibiotics. On Thursday of that week I called him to tell him I wasn't any better. He told me I was expecting miracles. On Saturday, Oren gathered up the kids and took them to Lake Charles for my brother's 50th surprise birthday party. I stayed home by myself. As fate would have it, the kids stayed in Lake Charles with my family. Sunday night when he got home, I told him I was dying. Sweet thing that he is, he tried to reassure me that I wasn't and it would be okay. But I told him something was really, really wrong.

On Monday, I was suppose to go into the office to train our new receptionist. My boss was on vacation. I got up brushed my teeth and passed out. When I came to, I called our office and told the new girl that she would just have to take messages because I wouldn't be able to make it in the office. That was my last memory of that day. I have since remembered that I would wake up a few times that day in several different rooms at different times. My sister, Melissa stated that she started getting weird texts from me. No words, just random letters. She knew something was really wrong. Thank God she called Oren. My next memory, I'm lying on the bathroom floor with Oren standing over me. I can see him, and he's speaking, but I can't hear him or respond to him. I'm so cold!! My ears are going to burst, I can't lift my head. I'm shaking. He carries me to the car and puts me in the back seat. I remember being put into a wheelchair, wrapped in blankets, cold rag on my head, ears feeling like they are going to burst, can't lift my head!! I sat in the waiting room for 2 1/2 hours. I start sweating!! My whole head gets wet!! Oren wheels me to the bathroom, I pass out. When I come to, I'm in a hospital gown, wires everywhere, can't feel my arms, Oren's talking to doctor, but he's not telling the story right. I can't talk, can't tell them it's not right....oh my God!! What's happening!!! They're giving me injections. I'm sleepy. I'm feeling somewhat better. Can talk a little. Doctor is not really listening to me, not really getting what I'm trying to tell him. The next thing I know, he's saying that I'm okay and I can go home!!!! WHAT!! I can't lift my head, it's about to explode, hard to walk, I'm not ok!!! He advises me to go back to the ENT!!! I can't believe this. The nurse promised us they'd help!!! We go home. Oren calls Mom, she will come in the next day. Thank God.

The next morning, Oren takes me back to the ENT, he doesn't even examine me. He states that it must be neurological. His nurse has to wheel me to my car. They are going to make me an appointment with a neurologist. We get home, my good friend comes over to help. She brings me medication, puts heat on my neck and ice on my head and I fall asleep. Mom comes in when I wake up. Later, she tells me I looked just like my father did the day he died. She was really, really frightened. At 5:15 pm the phone rings, it's Oren, the ENT called him to tell him that the neurologist could see me in a week. I start crying.....I'll be dead in a week. Thank goodness Mom is there. One sentence....."Have you called your regular doctor?".....my brain was too messed up, but Oren didn't think of it either. He was probably too scared. My internist knows me. I play tennis with his wife and he treats our whole family!!! Oren calls hims. He wants to see me in the morning.

Mom takes me to see him. I pass out and my doctor has to pick me up and carry me to the exam table. I'm cold and shaking like a leaf!! In his typical style he says, "What the hell is going on"!!! I knew at that point I was going to be okay. Between Mom and I we get the whole story out. He listens patiently, pauses, then says, "I think you have partially treated sepsis and bacterial meningitis. I want you to prepare yourself because all of the test will probably be negative because you've been on antibiotics for five months. I will have to treat you based on your symptoms. I'm not 100% positive that this is what you have, but my gut is telling me it is. You're just gonna have to trust me."

And I did....