I want to warn readers: YOU MAY GET LOST! My mind is racing, and it is probley not the best time to try and write. BUT, it is the only down time I have and I'll take advandtage of it.
The past week has been very stressful. Not only had I been told of the Aspergillous, but my new anti-anxiety med has made my anxiety worse! I couldn't sleep or finish a task without getting worried something was getting in the way or tripping me up. I'd walk in a room to hang clothes and see that the bathroom sink had streaks and would have to drop everything to clean it...leaving the laundry on the bed, waiting to go be hung. Then, go into the kitchen to get the Lysol to clean the sink and see there was a dish in the sink. Danger! I have to put it away immediately! Then, I touched the dishwasher-must wipe that down with Lysol too. Ok, back to the bedroom to hang the clothes. Uh-oh- Dogs need to go out, I'll let them out then finish clothes. Come back to clothes and finish hanging them only to realize I didn't swap laundy. Now the closet needs to be organized. The house cannot get clean enough. No matter what I do, the germs are surrounding me.
BUT According to one doc, this is not OCD. Though I was diagnosed a while ago. When I was on the EXR, my mind took a break-this had to be related to the drug switch.
So I went to the doc on Thursday, he instructed me to stop cold turkey. Which I was kind of glad of since I was getting lost in my own house. I got lost in the parking lot at Walmart-really lost. I had a panick attack and then like magic I realized where I was. This has to be the most scary mental state to be in. Every road sign and turn that should be familiar, doesn't look familiar until I'm a mile away. I double and triple check the locks in the house, make sure the air is turned up where it needs to be and wipe the counters and doorknobs continuously.I'm trapped! Not only this, but any little thing will make me cry. That new Taylor Swift song about the guy being the best thing thats ever been her's-bawl everytime!!! Vacuum broke-cried. Couldn't find my tweezers-cried. Jon didn't put the dishes away the "right" way-bawled. I'm an emotional basket case lol
Now I've been off the "new" drug for 6 days and I'm able to catch myself. If I stop, relax, and think things through I can get through the day. Even yoga is distracting me (on the hardwood floor at eye level its amazing the dirt and hair you see)! That day at clinic was so annoying too because the doctor said "maybe your not doing enough exercise". I could have screamed! I find EVERY possible way to exercise and get my heartrate up every day-several times a day. Granted I may smell like a pig farm from sweating with everythimg I do....but I'm on a mission damnit!
HAHAHA got to throw in my random thought. I'm sitting here at Panera (in an undisclosed Tampa location) and a man sat next to me about 5 minutes ago. Well, the doctor calls to discuss my poop. How do you discribe poo without knowing what I'm talking about! lol Too funny.
Ok, mind is going on a loop again (if it ever got off)-going to wrap up paperwork for my ENT appointment, which I'm really excited about!
Tuesday, October 19, 2010
Monday, October 11, 2010
The Fungus Among Us
Unknown to me, when writing my last post I hadn't had all the facts yet. I got a call about two days later from clinic telling me they had some bad news. My cultures showed I was growing Aspergillous in my lungs. Gross. Scary. Get. It. Out.
Turns out it is treatable, and other then clinic telling me I have it, I would never know. The symptoms are the same as the side effects of all my other medication. Slight cough and fatigue. I also was shocked to learn out of the 6 high risk factors-I had 4: transplant patient, Cystic Fibrosis, Immune Compromised, and on steroids. Nice little bit of info I wish I had known about. But hindsight is 20/20, and I still would've gone through transplant.
Now the next issue came with trying to get the prescription needed to treat it. Since its a pretty powerful drug, and I need at least 90 day treatment, insurance wanted prior authorization. I'm the lucky one, however, who always get tangled in the system. Insurance sent the wrong form to be filled out, leading to the wrong form being sent back saying it was missing information, and again that same wrong form being sent back with all the information. This morning I called a Patient Care Coordinator's number at the insurance company, she actually was helpful, and it seems now the ball is rolling.
I have developed some new goals overnight too. We went to good friends H and K's wedding rehearsal last night, and H and another friend of hers J, talked me into starting to go to the gym with them. Not only that, J is running in a 5K on Thanksgiving and I thought what a better way to give thanks to my donor than to take our lungs for a trot. I'm real excited! I just need to build up some more-and walking is allowed =) Its just nice that breathing wouldn't be the issue.
More big news, if you don't know me too well I have a few fears. One of them is fish. Yes, fish. I've heard it all before "they won't hurt you", "seriously, they're more afraid of you", and my favorite "just jump in". I can't tell you how NOT easy getting over this is. But I made a list of things I MUST do post transplant to fully feel like I'm making the best of this life, and swimming with those slimy creatures was on the list.
So Saturday, my parents and in-laws and Jon and I all met at the springs. I really did not think I was going to even attempt it-even more so once I saw the size of the mullet in the water. They looked like mini-sharks to me! One reason I was so pushy towards myself though was that before transplant, swimming was scary. Holding my breath was scary. The thought of drowning-imminent. But on 10/9/10 I decided enough was enough. I put on my snorkel and mask, then closed my eyes, and about 30 minutes of coddling the steps-jumped in! Cold? yeah. Scary? BEYOND! Of course as soon as I looked down there was a happy lil fish staring at me-and I screamed. Jon scared him off and proceeded to push my tube(my body was in the water) and my MIL went in front of me to scare whatever fish may be there. We actually made it up the middle and sides of the spring. I even swam over the spring myself =) It was scary, and I admit I did have a panic attack at one point, but I did it! I was very proud of myself, and I think I may be able to get to a point where one day I'm completely over the fear.
As for now, its way past lunchtime and my belly is reminding me. I hope each and everyone you gets to face a fear and set a new goal...because its an amazing feeling!
Turns out it is treatable, and other then clinic telling me I have it, I would never know. The symptoms are the same as the side effects of all my other medication. Slight cough and fatigue. I also was shocked to learn out of the 6 high risk factors-I had 4: transplant patient, Cystic Fibrosis, Immune Compromised, and on steroids. Nice little bit of info I wish I had known about. But hindsight is 20/20, and I still would've gone through transplant.
Now the next issue came with trying to get the prescription needed to treat it. Since its a pretty powerful drug, and I need at least 90 day treatment, insurance wanted prior authorization. I'm the lucky one, however, who always get tangled in the system. Insurance sent the wrong form to be filled out, leading to the wrong form being sent back saying it was missing information, and again that same wrong form being sent back with all the information. This morning I called a Patient Care Coordinator's number at the insurance company, she actually was helpful, and it seems now the ball is rolling.
I have developed some new goals overnight too. We went to good friends H and K's wedding rehearsal last night, and H and another friend of hers J, talked me into starting to go to the gym with them. Not only that, J is running in a 5K on Thanksgiving and I thought what a better way to give thanks to my donor than to take our lungs for a trot. I'm real excited! I just need to build up some more-and walking is allowed =) Its just nice that breathing wouldn't be the issue.
More big news, if you don't know me too well I have a few fears. One of them is fish. Yes, fish. I've heard it all before "they won't hurt you", "seriously, they're more afraid of you", and my favorite "just jump in". I can't tell you how NOT easy getting over this is. But I made a list of things I MUST do post transplant to fully feel like I'm making the best of this life, and swimming with those slimy creatures was on the list.
So Saturday, my parents and in-laws and Jon and I all met at the springs. I really did not think I was going to even attempt it-even more so once I saw the size of the mullet in the water. They looked like mini-sharks to me! One reason I was so pushy towards myself though was that before transplant, swimming was scary. Holding my breath was scary. The thought of drowning-imminent. But on 10/9/10 I decided enough was enough. I put on my snorkel and mask, then closed my eyes, and about 30 minutes of coddling the steps-jumped in! Cold? yeah. Scary? BEYOND! Of course as soon as I looked down there was a happy lil fish staring at me-and I screamed. Jon scared him off and proceeded to push my tube(my body was in the water) and my MIL went in front of me to scare whatever fish may be there. We actually made it up the middle and sides of the spring. I even swam over the spring myself =) It was scary, and I admit I did have a panic attack at one point, but I did it! I was very proud of myself, and I think I may be able to get to a point where one day I'm completely over the fear.
As for now, its way past lunchtime and my belly is reminding me. I hope each and everyone you gets to face a fear and set a new goal...because its an amazing feeling!
Tuesday, October 5, 2010
Quaqmire
Ever feel like your life is a cartoon? I'm starting too. I woke up one day, about September 20th, feeling very very itchy. My face felt like I had a bunch of cotton balls stuffed inside so tight I could barely smile. When Jon woke up shortly after me, his look said it all. I ran to the bathroom mirror to see my face looked just like Quaqmire's!!! I immediately thought I was having an allergic reaction to something, but nothing had changed medication or food wise. I had been on a new cottage cheese kick for about a week before-so no way those little curds were just now showing their evil side. Then I thought it was my kidneys. Was I retaining fluid? The swelling wasn't pitted (meaning if I pushed on it it didn't stay that way). So before I called clinic, I called my Mom.
She said she thought it was the Prednisone, to watch the swelling, and drink a lot of fluids. So I did, and the swelling went down real quick. Then, about 5 days later, after having a few days of random swollen feet, my feet got HUGE after eating and playing at the playground with my little cousin. This time, the pain was a little ridiculous-it felt like I had fire ants on my feet. My cheeks were sore, but not as bad as they have gotten since.I find my cheeks puffing up at odd times-when I'm hot, nervous, or eat anything! They swell so much, I can barely see out of my eyes. Jon says it doesn't look as bad as I think, but he's my husband-they signed a contract to make us feel beautiful. So now, I have puffy cheeks and feet, and now my hands want to start in on the fun!
After talking to clinic, my blood work was awesome (meaning kidneys okay) and my bronchoscopy came back good as well (meaning I can taper down the Predinosone). This is FABULOUS news because I truly believe that little devil of a pill is the problem. Though it took 3 months to show its true colors, it has been working for me obvioulsy, since the lungs appear to be okay.
My only wish now, is that I don't feel so uncomfortable in my body. I knew body changes were coming, just as they had when I got sick. But this is getting hard to deal with at times. Crowds seem to be staring, just as when I was on oxygen and in a wheelchair. Food seems to be an issue again, can't over eat or my stomach will hurt, but need to gain weight. And my clothes still don't fit, either they are too big or too small. I suppose when you say "Yes, I want to breathe like everyone else", you also say "I know I'm trading one set of issues for another". And I'm okay with that-because I love breathing! I just need to get comfortable so I can see people again without feeling the burden of stares they throw.
I also found out I can write a letter to my donor's family. As far as starting that letter, I'm at a block. How do you thank someone for giving you life and taking someone from them? Where do I begin? Thank you is so empty feeling these days. Once I get it going, I'm sure it will be easy- but right now I'm stupified.
Ok ladies and gents, I think thats all for right now...Hope everyone is enjoying this gorgeous Florida weather...and keep praying for those GATORS! =)
She said she thought it was the Prednisone, to watch the swelling, and drink a lot of fluids. So I did, and the swelling went down real quick. Then, about 5 days later, after having a few days of random swollen feet, my feet got HUGE after eating and playing at the playground with my little cousin. This time, the pain was a little ridiculous-it felt like I had fire ants on my feet. My cheeks were sore, but not as bad as they have gotten since.I find my cheeks puffing up at odd times-when I'm hot, nervous, or eat anything! They swell so much, I can barely see out of my eyes. Jon says it doesn't look as bad as I think, but he's my husband-they signed a contract to make us feel beautiful. So now, I have puffy cheeks and feet, and now my hands want to start in on the fun!
After talking to clinic, my blood work was awesome (meaning kidneys okay) and my bronchoscopy came back good as well (meaning I can taper down the Predinosone). This is FABULOUS news because I truly believe that little devil of a pill is the problem. Though it took 3 months to show its true colors, it has been working for me obvioulsy, since the lungs appear to be okay.
My only wish now, is that I don't feel so uncomfortable in my body. I knew body changes were coming, just as they had when I got sick. But this is getting hard to deal with at times. Crowds seem to be staring, just as when I was on oxygen and in a wheelchair. Food seems to be an issue again, can't over eat or my stomach will hurt, but need to gain weight. And my clothes still don't fit, either they are too big or too small. I suppose when you say "Yes, I want to breathe like everyone else", you also say "I know I'm trading one set of issues for another". And I'm okay with that-because I love breathing! I just need to get comfortable so I can see people again without feeling the burden of stares they throw.
I also found out I can write a letter to my donor's family. As far as starting that letter, I'm at a block. How do you thank someone for giving you life and taking someone from them? Where do I begin? Thank you is so empty feeling these days. Once I get it going, I'm sure it will be easy- but right now I'm stupified.
Ok ladies and gents, I think thats all for right now...Hope everyone is enjoying this gorgeous Florida weather...and keep praying for those GATORS! =)
Subscribe to:
Posts (Atom)
