Day Two ~ Intense

Today began on that dreaded third floor. :( By the sheer grace of God, I wasn't as stressed about it as usual, but I was also in no rush to check in. I mean, come on, I was a whole four minutes early for the appointment. I'm totally certain they had things to do other than rush me on back to get started!! I decided to be considerate & not take their time. ;)

At exactly 8:00 a.m. I stepped up to the window to check in. A familiar face was waiting for me. It was sweet Kristina. She did my PFT Box test in December of 2010 & was sooooo kind! It was a relief to see her. We headed to the room & jumped right in. She did have to page Dr. Olson because I'd broken the rules again by taking my neb treatment before the test. Of course Dr. Olson understood & we moved forward with the tests. As usual, I had to do each part numerous times because my lung function was so inconsistent. Kristina was patient & understanding though. When she finally decided to throw in the towel, we moved down the hall for my arterial gas draw before the 6-minute walk test. Not the highlight of my day!

Kristina tried once with no luck. Without hesitation she asked Mark to try. After some sickening digging he was successful. He wrapped my hand in warmers & hurried off to process the blood. I was at 93% ~ a bit low, but much better than it was in October! Kristina & I completed the rest of the test & I headed downstairs to meet up with Mom for my appointment with Dr. Olson.

Dr. Olson was a refreshing sight as always. She let me know that she'd spoken with Dr. Katial and knew things weren't "okay" so I couldn't downplay anything. Ha! It's like she can see straight through me! Several results weren't back yet, but she was concerned about the ones that were. She didnt share many details with me because she said they needed a lot more information. She sent tons of testing for Jennifer to add to my schedule & had Kaci walk me over for an immediate ENO Test (the one that measures airway inflammation). In July I registered at a very high 245. Today It was 358 which I later found out is the rare top 1% of ENO test results & not a good thing by any measure. When Kaci handed off the result, Dr. Olson hustled from the room. Within a minute I noticed Dr. Katial pass by the door. I felt Mom tensing up next to me. I just sat quietly and said a prayer for her. I didn't know what else to do. I felt it too, but I felt good about it. God is doing something big and intense here this week and I'm completely on board. Kaci returned with instructions for my prednisone dosage and a ton of new test orders for Jennifer to arrange in my schedule. We headed to the cafeteria for lunch to allow time for the updates.

After lunch we killed a little time catching up with friends from home. Before long it was time to head to the basement cardiology department for my unexpected ECHO bubble stress treadmill test. I was a bit nervous about this test because deep down I knew I was feeling pretty crummy and I didn't want to disappoint the doctors with a less than optimal performance. After I checked in I slipped away to the restroom to psych myself up before they called me back. Crazy, I know, but sometimes you just need a minute to pull yourself together.

I returned to the waiting area just in time to meet Nikki calling my name. I was delighted to see it was her. She has performed the test with me each time so having her there was refreshing. As she prepped me for the test she voiced her concerns about my wheezing and we proceeded to console each other. :)  The test was difficult, but everyone involved convinced me that I performed well above the expected rates for my current medical condition. I decided I'd have to accept that and let my worries go. I truly gave it all I had.

We finished just in time to rush to the second floor to meet with speech pathologist, Heather about my VCD. She simply reviewed exercises and strategies that I've been using for the past two years and confirmed that my form is correct. My VCD has improved overall, but I lack control when it flares during illnesses and severe asthma exacerbations.

My final appointment of the day was a simple high resolution CT of the chest. It was quick and painless which was a lovely way to end and intense day. Mom and I both left the building knowing that this week was different. Even though most of the information is pending, it is clear from the demeanor of the doctors that my condition has worsened...more than even I recognize. It's becoming clear to me that God cancelled my cancellation for a pretty BIG reason.

Day One ~ Doctors, Doctors, Doctors

I woke today inspired by friends and ready to go get the Good God had in store for me. I was still struggling to breathe, but feeling a bit better overall. Walking in through the National Jewish double doors I was greeted by the familiar scent of those sweet Rose Petal toys from my past. :)  It was a welcome comfort.

My day started with vitals and a spirometry which of course made me feel like a failure. I had to remind myself that I was here for help though. One day I will pass these stupid lung function tests! The nurse led Mom and me back to the room where we were quickly met by dear Dr. Katial, the immunologist. I absolutely love that doctor! We discussed recent events and shared his dismay with my current condition. He was "underwhelmed" by my status on such a dangerously high dose of steroids and other meds. He added orders for tons of labs and said he would be talking with Dr. Olson and the other doctors as the results came in. Even though it was the first appointment and he couldn't do much more than say he needed to gather more information, I actually left feeling extremely hopeful. I could sense his urge to fight for me and that was something I've been longing for.

Without a wasted minute, they hustled us across the waiting room to the other exam rooms to meet with gastrointerologist, Dr. Toribara. The meeting was light-hearted and concise. He has quite the sense of humor. He was quick to point out that I am a "Hell of a case" and he's glad he's a minor player in it! He confirmed my beliefs that reflux/gastric problems do not play a role in worsening my asthma or health problems. Even though there are studies to show the correlation is possible, he said it just isn't the case with me. With that, piece of the puzzle in place, we rolled on over to appointment number three with rheumatologist, Dr. Maleki.

This is where things got a little heavier. She reviewed tests, discussed symptoms, and absolutely confirmed Churg Strauss as my diagnosis. She said it's such a rare disease that she has never seen or even read about such a solid, early stage case. Then she talked about the treatment. She was concerned about my course of treatment since the initial diagnosis on August 30th. Things haven't exactly gone as planned and she wasn't pleased or content with it. As I listened to her talk I thought back on the past few months. It's like they were flashing before me. I was seeing all the things I try to put out of my mind in order to cope from day to day. Things like begging doctors to order tests, communicating back and forth across the country, missing work, inadequate care, contradicting plans and so on. She explained the possibility of trying other treatments if the one I'm on now doesn't start working. Her scenarios included options that aren't readily available and some that need to be monitored very closely and seriously. In my mind I knew that nothing she was discussing was likely if things continue as they have been. It's time for a change. I need these doctors for more than a week. I need help. I want to work and I want to live. I deserve to live. She wrapped up the appointment by examining me and pointing out ways my body has deteriorated over recent months. She also order several more tests and promised to consult with Drs. Katial and Olson to develop and wonderful plan. I walked away quietly knowing that was exactly what I needed..."a wonderful plan".

After that, I was about 30 minutes late for my appointment with ENT, Dr. Ramakrishnan. It was no problem though, they were able to get me right in. He reviewed his surgery notes from October and examined my sinuses. Overall, the good news is that the surgery was a success, but there is still a problem with eosinophilia. He said it was most likely connected to the Churg Strauss and his role from this point forward would be a minor one.

That wrapped up the first day with the exception of a few more needle sticks. :(  For a day of initial meetings and tests I already feel like big things are going to happen this week.

a little different this time

Everything about this trip has been a little different from the beginning, so I feel inclined to take a different approach to blogging about it too. Rather than the simple day by day ~ play by play rundown I've usually given, I feel the overwhelming urge to be honest with myself and include my raw, uncensored thoughts. I do believe God used my dearest friends to get me out here this time for a reason. He has a plan for me. I can't claim to know that plan, but I want to be able to look back on these trying times and remember how it feels so I can ALWAYS be thankful. I know that life can change drastically from one day or even one hour to the next. The outcomes I am staring at this week could be radically different next week, but that's okay. The important thing is that I'm on board again! I'm back in the game and I am ready to fight. I'm ready to do what I need to do, whether it's a little different or a whole lot different....

Thanks for rallying the troops, God!

I must admit that I wasn't exactly abounding with optimism and expectations for this trip to National Jewish. I wanted to be ~ I just couldn't seem to muster it up. That's when God came through in a heart-melting, jaw-dropping way. He rallied the troops and in one day of traveling cross-country I have been showered with more love, inspiration, and encouragement than any one person deserves. The power of support is truly priceless. It has really changed my whole perspective! I DO believe this trip will be GOOD! How can anything be against me when God is clearly showing me all He has in place to encourage me?!

I know I've mentioned it before, but I am so thankful how this journey has shown me true friendship. It constantly amazes me to see how sincerely people care.... for me. It's so humbling. Mere acquaintances have become solid rocks of support. I am blessed to be touched by such wonderful people I can call my friends.

pneumonia should be a 4 letter word

I don't deserve to complain about being sick. Compared to other school years, I haven't had as many actual infections this year. Maybe the transition from the classroom really has made a difference. I've been out for so many other health reasons, it's just hard to know why my body is doing what it's doing. Regardless of the reason, I've had a good run & when you look at the odds & history, I guess I was due. Seriously though, for the record, I just have to say, pneumonia is a beast.

It has a way of taking you at your weakest and highlighting all you are struggling with. I had just completed my first full week of teaching since early September. It just seems ridiculous that I can not make it seven days without wimping out. I've withdrawn from friends and family this week because I don't want anyone to know how bad I feel. Also, I totally don't have the sick days for being this sick. Pneumonia should seriously be a four letter word.

time to decide

Well if I had to name one thing I'm good at, I'd have to say it's avoidance! When I decided not to deal with Denver, I really didn't deal with it!

A couple of weeks ago, I finally decided to cancel the trip. As much as I love Denver and my doctors at National Jewish I just felt like it wouldn't be worth going. Mom was against going, it will cost money that I don't have, and I convinced myself it probably wouldn't help anyhow. Decision made. Trip and appointments cancelled.

Or so I thought....until last week. I got an email from Kaci telling me that Dr. Olson had received updates from my doctor and was concerned. She wanted me know she was keeping me on the schedule for all my appointments. She felt like I need to make the trip and they can help me. Staying true to my avoidance, I took some time to process the email.

After a serious heart to heart with Mom and some serious thinking on my own, I've finally decided to go. (or realized it's meant to happen) Although I have felt completely "done" and exhausted lately, I can't let that cloud my judgment. I can't let it rob me of a chance at wellness, normalcy, something better. If Dr. Olson and my other doctors at National Jewish still believe, I have to go for it. After all, they're the Best in the nation at what they do. Whatever comes of this trip, I know I am supposed to go and in the end it will be good.

all ya can do is laugh :)

So, last week, my INR was 1.4 - that's quite low since it's supposed to be 2.5 in a perfect world. It wasn't surprising though because it's been low almost every week. This week though, my body decided to mix things up...

I received a panicked call from Kristy (pulmonologist) during dismissal today. Get this....my INR has spiked to 7.1. Unreal ~ I know! She was so scared for me because I was only at 2.1 when I had serious bloodloss with the nosebleed. She was begging me to be careful and explaining how important it would be to get to the hospital if anything happens. I was listening to her and truly understanding how serious it all was, but at the same time, I couldn't help but laugh inside.  Seriously....from 1.4 to 7.1. I mean it seems like my INR level is trying to beat my hemoglobin level! Geez! If anything my body is interesting.  :)  Sometimes all ya can do is laugh... (and be really careful like the dr said :) )

(I do promise not to use any knives or scissors tonight! haha)

a frustrated doctor & a broken me

I had a gut~wrenching appointment with Dr. Thompson yesterday. I knew it would be a tough one for me, because my breathing has worsened each day since I was released from the hospital. I was dreading the spirometry tests. The techs in his office are so good to me now though. They've finally accepted the fact that I AM trying my best and I probably WON'T provide them with the results they need. (especially on days like this) So, I got through the tests and moved on to the exam room.

Dr. Thompson entered with his head down. He seemed defeated. He started by telling me he wished he had news for me like he'd just given his last patient. (Little does he know, I heard that convo through the wall. They discussed her new cancer diagnosis and a very positive prognosis.) I felt like time stopped. I was sitting in the chair, struggling for each breath, just processing the fact that my doctor just told me he would rather be having a cancer talk with me... 

My lung function was 22%. My eosinophils had spiked to over 1900 again. He said he was at a complete loss. He decided to restart the Churg Strauss treatments again regardless of my hemoglobin level. He said it was too dangerous to risk giving the disease more time to advance to my organs. He also agreed that I can't live in the hospital. He increased my steroids to an obscene amount and added some other meds to try and get me through on my own at home. He didn't even look me in the eyes when I left. He just turned to the door and said, "I'm sorry, Toni. We're doing our best."

I've been pretty numb for a while now. Last week was more of a breakdown due to the pain. Last night though, I broke. To see him feel so defeated was overwhelming. It was like a punch in the stomach. I want to feel good. I want to feel good for real, without pretending. I guess about five months of emotions came flooding forward all at once. I'm exhausted. I don't know how else to fight. I do everything I am supposed to do and it doesn't seem to matter. I guess I just need to take one day at a time and let go. Whatever will be, will be, and I'll be fine.

Introducing Dr. Roberts

Well, the time had come and I had to make the move. Dr. Raghavan just wasn't the right fit. I truly think my case was simply out of her league. I want to believe she had the best intentions, but was simply overwhelmed and didn't know HOW to help me. It was time to move on in order to help myself. Dr. Thompson chose for me this time ~ my new primary care physician is Dr. Shannon Roberts. Here's to hoping for a lasting winner!

I met with her today, and I feel optimistic! In retrospect, my first meeting with Dr. Raghavan was a breath of fresh air because she was so compassionate, sympathetic, and comforting. It was impressive after how I'd been treated by Dr. Caudill. Now that I think back, she didn't provide much more. Dr. Roberts seemed to fill in all the missing pieces. She was compassionate, aware, clearly intelligent, inquisitive, diligent, and proactive. She took the time to read my paperwork and listen to my story. She even developed a "plan of action" in case I have a problem and need her medical attention immediately.

It was only the first meeting, but I'm hoping she lives up to her impressive first impression.

Thankful, So Thankful for Good News!

I know my last post was a tough one, but that's where I was. I was in the midst of intense, unreasonable pain. These are the things I want to remember...the good, the bad, the ugly...because one day I want to look back on ALL the things that worked together to make my simple life glorify God.

Today, I am thankful for good news. The pain from the infection in my arm is less consuming today. The antibiotics are working. This is good. My lab results also came back today. My INR was a bit low, but that was expected after the infusion and other med changes. The amazing stat is my hemoglobin....it's up to a whopping 9.1! Oh yes, that's right ~ NINE point ONE baby!! Still pretty stinking low, but a beautiful number compared to 7. This increase means the infusion could be the answer!

This means today is a very, very good day.

i give

i give
I'm throwing in the white flag to surrender. I like to think one of the things I've had going for me has been my tolerance. I've often told doctors or techs to do what they needed to do because I could get through it. And I did. But now, I think I've met my defeat.

Monday morning my forearm started hurting down from where the IV site had been. It had been fine Sunday when the nurse removed the IV and even before that, so this was new to me. I didn't think much of it though. I just tried to ignore the discomfort and went on with the day. Tuesday morning I woke up and it was quite a bit worse. The tenderness was spreading and more intense. The pain only increased as the day went on. By 3:00 I noticed redness streaking up my arm from the IV site.

By this morning, it was red, swelling, warm to the touch and hurting beyond belief. I asked the school nurse for advice and she practically freaked out on me. She insisted I call my doctor immediately. After a long morning of waiting for the doctor to respond & pretending I was okay, she finally returned my call and told me to hurry over.

She said it's a very bad infection.When she grabbed my arm to examine it, I started throwing up. (what a wimp I am & how embarrassing!) The pain was too much to handle anymore. She gave me a shot and oral antibiotics and wants to look at it again tomorrow with Dr. Thompson. She said she'd talk to him about the possibility of it being an internal staph infection. (but told me not to worry about that ~ so I won't) I can't take any pain meds or ibuprofen, so we're hoping the antibiotics work & kick in quickly.

I left immediately after school and it's taken all my energy to just deal with the pain. I'm completely defeated. It's kinda funny that after everything, it seems an arm infection is going to be my breaking point.....

the "bloody" details

Well Dr. Thompson explained what I'll call "hopeful plan A".... the problem/solution he and Dr. Olson have decided to label me with and treat first in hopes it is the answer to this bloody dilemma. ;)  Sadly, in a nutshell, I predicted the problem (never to this extreme) back on November 8th, before I was released from the hospital for bloodloss. In my very basic understanding of his complex & elaborate explanation it does seem that if "hopeful plan A" works that means a transfusion back then would have prevented all of this.

 Whoa.... that's enough to make me need to catch my breath.

It seems my body was already in such a "deficient and fragile" state that rather than regenerate the red blood cells as it should have ~ it simply chose to shut down. Way to be there for me, Body!! This process continued allowing my systems to wear down more and more as time passed.

The doctors' hope is that if this is the source of the problem, then it is possible that the iron infusions will "jumpstart" those processes again. Dr. Thompson said we should have an idea of whether or not it's working in a week or two. Also, assuming it works, as soon as I get two blood counts going in a positive direction, they are going to reinstate the chemo treatment. This is important because my eosinophil count has spiked again. If it doesn't work, they have other plans to explore.

Sooo, I'm home now~processing things I guess. I've been ordered to stay home tomorrow. I'm feeling pretty exhausted so I know it's for the best & he wanted to limit my germ exposure for another day. I can't help but feel a bit defeated though. I'm missing another day of  MY job - the job I'm contracted to do. I want to believe this is all for good. It would help to believe this is all for good.....

let's make some lemonade

Well it's no secret that I haven't been pleased with the level of care (or lack thereof) that I've been receiving from Dr. Raghavan. It seems that this asthma exacerbation might have come at just the perfect time. It might be serving as the catalyst for getting my healthcare back on track ~ or at least I hope that's what is happening. Dr. Thompson has been so shocked and concerned by my recent labs & the all the things that haven't been done to help me that he has jumped into high gear. He's been consulting with Dr. Olson daily. I actually feel.... like I have a doctor on my side again.

He came in today with a load of information. Basically, it seems he was saying that the lab results showed that my body has stopped making hemoglobin & possibly hematocrit too??? Not sure actually. My hemoglobin was down to 7.8 today. My ferritin (iron level) is very low too. He said they decided the best plan of action to try first is an IV iron infusion...actually one today and one tomorrow. The side effects can be rough (flu-like symptoms, diarrhea, vomiting, nausea, etc). What's new, eh? The good news is that if this works, in three weeks or less I could feel AMAZINGLY better. I should notice more clarity in thinking in a week and start feeling stronger and more energetic within two weeks. Wow! That's an exciting thought! I don't have any details yet on why my body is doing this or is this a forever problem or a forever fix. I just know that my crummy lungs landed me in this place again, but that gave Dr. Thompson and Dr. Olson the chance to work on attacking my blood problem. I'll put this in the positive column for now....


My First IV Iron Infusion



crummy lungs

I tried my best.
 I begged.
I took extra meds.
 I sat still.
I didn't win.

Dr. Thompson & Dr. Olson decided that my respiratory system is too fragile - they couldn't chance waiting any longer. He admitted me to the hospital this afternoon. At least I look good, huh? Wish that applied to my actual health because it doesn't seem to count for much in reality.

They are putting their heads together to solve the low H&H problem. They both had some ideas involving rare genetic solutions that were way over my head. They're doing bloodwork to further investigate possibilities that will lead to getting me back on my treatment. Dr. Thompson has also recommended a new primary  care doctor for me. Her name is Shannon Roberts so I hope that will help my situation as well.

For now though, I'm here again, giving my crummy lungs the chance to recover with high doses of IV meds. I really just need to figure out how to get all this equipment in my house and do this stuff on my own. It would be so much more convenient...

transfusion confusion

This is one of the many times that my own medical degree would truly be beneficial. Needing several specialists comes with the problem of dealing with their differing opinions. What's okay... what's not so okay? What can we blow off for now? What should we really worry about and act on immediately? I'm left in the middle trying to decipher the medical lingo and make the best decision for myself. Lately, I find myself confused and wondering who to trust.

This transfusion situation has become a perfect example. I don't know what to think anymore. I rushed back to town for labs and my appointment with Dr. Neal on Tuesday. He voiced serious concern about my H&H levels and stated he will not feel comfortable reinstating the treatments until my hemoglobin is stable at 11. When I left his office, the PA, Sarah, from Dr. Raghavan's office called. (Dr. Raghavan was on vacation). She said my lab results were in and my hemoglobin was 8.4. She was calling the infusion center to schedule my transfusion for Wednesday morning.

When she hung up, I sat in the parking lot frozen for a moment. A transfusion... a rush came over me. I felt lost, overwhelmed, and completely alone. Is this something I could do alone? I wasn't sure. I would have to though. And it seemed like the right answer...finally. Maybe it would give my body what it's been needing to recover. Maybe I would finally start to feel stronger ~ not so dizzy. Somehow from there, I put the keys in the ignition and moved on with my day as if nothing was different. Sometimes you just pick yourself up and move forward... alone or not.

It turned out, being alone didn't matter. My hemoglobin was a tad lower this morning. When they touched base with Dr. Raghavan before starting the transfusion, she cancelled it. Yes, that's what I said, cancelled it. The tech was befuddled and so was I. She said she'd decided to have me try iron tablets instead. At this point, I don't know what else to do but just move forward. I can't change a doctor's orders. Maybe the iron tablets will be the silver bullet - who knows?

Well, I guess they won't. I just left Walgreens where the pharmacist told me I should take iron at the same time I take coumadin because it will bond with it. It will also interact with some of my other meds. He highly recommended that I NOT take the iron tablets, but that I talk with my doctor immediately.

Seriously? That was enough for me. No thanks! I'm over it. I'm not calling another doctor's office to beg someone to listen to me relay crucial information about my health. Forget it. I'm just not going to do anything. Surely one day soon, one of my doctors will figure out the right way to help me. Until then, I'm out.

more news

I'm getting to the point where I'm starting to worry about myself a little. Looking back, I can see that I've been disconnecting in a way, little by little over the past few months. I guess it's been my way of dealing. I've been trying this and that for any type of escape. I've been numb to emotions yet feel like my heart is constantly crumbling at the same time. I think I could easily spiral out of control. I don't know how much more I can handle and I'm not sure if I really believe anymore. I want to & I think I still can...I'm just not sure.

Dr. Neal's nurse called Tuesday about my labs that were drawn Monday. My H&H level is down to 8.4. He is extremely concerned. He said I needed to get into my PCP immediately to have it addressed.

Well, I called Dr. Raghavan & saw her today. She was more baffled by the labs. She seemed to be at a loss for what to do. She kept asking me what Dr. Olson would do. Well, I don't know because this has never happened before when I've been with Dr. Olson! She did diagnose me with bronchitis & a sinus infection, but couldn't figure out what to do about the mysterious blood loss. I finally told her I needed to be somewhere and she said to just return next week to have the levels checked again. If they are still low, she wants to do a transfusion.

I can't begin to recount the thoughts that flooded my head as I drove away. Talk about being baffled! Just then, the phone rang and it was Kaci, calling for Dr. Olson. She had also received a copy of the labs and was quite concerned. I told her what my doctors were doing (or not doing). She insisted I stop taking my treatment medicine because it could be the source of the problem. She said she would call my PCP and share her thoughts. I am supposed to go back on Tuesday for more labs.

I don't want to process all the what ifs of this situation. I just know that this treatment was supposed to be my answer. At the time, there wasn't another option. I don't want to face the thought of not being able to have this treatment...

and then the phone rang

Today was kind of a tough day because I didn't feel well. I seemed to worsen as the day went on with aches and chills. By mid afternoon I had a full blown 102 degree fever. Nice timing ~ just two more days until winter break and I wasn't going to make it. My body has such a way of making me feel like a complete failure over and over again. I just want to go to work and do my job....it sounds so simple, but I'm having such a hard time with it this year. :( 

I was fighting the fever with Tylenol and rest when the phone rang. It was my scheduler Jennifer from National Jewish. She surprised me by saying Dr. Olson wants me back in Denver in January. I was feeling a bit out of it so I asked her to clarify ~ I was hearing her correctly. Dr. Olson has been concerned about my labs & the direction of my care and wants me back at National Jewish for a follow up with all seven of my specialists. The scheduling of that many doctors was a challenge for Jennifer, so the trip isn't actually going to happen until the week of February 20th.

I just hung up the phone moments ago and I feel frozen....numb....paralyzed even. I'm not ready to deal with the decisions that accompany a medical trip again so soon. I think I'm going to deal with it by not dealing with it for now. I'm just going to keep this phone call to myself for a while. I don't want to lie to anyone, but I just can't deal with travel drama right now...

I'm alright...

That's my new default answer. People were getting upset with "I'm fine" so I had to find a new line..."I'm alright" seems to be my new go to phrase. The thing is, it's actually true sometimes, so I don't feel so bad saying it. The funny thing is that most people think I'm doing GREAT because I can totally pull off the "look" no longer than I'm at work. That's a good thing because people have worried about me way too much.

Tomorrow will mark the fourth week of my Churg Strauss treatment. My dosage has been doubled once already. Hopefully it won't need to be increased again. I'm due for labs mid week to make sure my body is tolerating it "properly". The side effects haven't exactly been fun. It seems to average out that I spend every other day throwing up ~ so I suppose I should be thankful it's not every single day.

The treatment is completely destroying my INR level as expected. My doctor has continued to increase my coumadin dosage but my INR still isn't stable. I'm having it checked again tomorrow. It seems like it is higher now because I smashed my finger today and it bled endlessly from beneath the nail. It sounds crazy, but I hope that is a sign that my level is closer 2.5!

Finally, I guess I should talk about strength & work. :( I wasn't cleared to go back to work full time, so I'm still working half days. Today was the first day of my third week back. I've tried to pretend like I'm loving it. I thought it would get better. I'm hoping the problem is that I'm just working mornings and sharing my job with a sub. It's time to be honest with myself though, I'm hating it. I'm absolutely hating it. I've never hated my job so much. I feel completely lost ~ out of the loop. I have no idea what's going on after I'm gone. I missed so much while I was gone. I don't feel part of things at all anymore. I feel completely disconnected. I missed too much and I can't get it back. I can't make it up. I also don't feel good half the time I'm at work. I am so sick of pretending that I feel great. I'm exhausted by 9:00 a.m. Some days are certainly better than others but I can't go on like this. I want to love my job again.

I'm just tired and ready for the fight to be over. I want my life back.

Anorexia

I have to say, I've had enough of this! I am NOT anorexic and anyone who knows me and truly knows what I've been going through can back me up on this. It is beyond my understanding how a doctor can sit in the room with me and talk to me about how my new treatment will cause vomiting and severe nausea and in the next breath threaten to send me to a nutritionist if I don't gain weight?!?! Are you kidding me? My weight is the least of my worries right now! At least it's stable now and I'm not losing any more. Geez, I think I have enough to deal with without having my doctors threaten me. Way to add some more stress to my life MDs!

More time

I know I get frustrated with my body. I want to recover immediately and just get back to normal. I have to admit that as slow as my progress has been, I am noticing progress. For example, I am stronger in the mornings now. I actually have a little stamina to do a few things in the morning before I start getting dizzy and feel completely drained for the day. That ~ I am calling a win!! Put it in the victory column. I'm taking what I can get for now! I'm finally wrapping my head around what I've been through this round. I guess it makes sense I'm having a tougher time with the ole bounce back. I'm starting to see the light though, and that helps. That really helps.

I just returned from my appointment and it wasn't great, but it wasn't terrible. The good news is that Dr. Raghavan actually talked to Dr. Olson while I was there! Yay for another victory! Why was that so hard? They are on the same page now and we have a plan! My H&H is slowing creeping up. I'm in the double digits now at 10. My INR was a low 1.4 (it should be around 2.5). She increased my coumadin dosage but cautioned me to be extra careful since I seem to be a bleeder at lower levels. They also decided to go ahead and start my Churg Strauss treatment. It's the chemo drug we've been waiting & waiting to start. I'm not allowed to go back to work for two more weeks. After that I'll be trying half days and easing back in to the routine. Both doctors thought this is the perfect time to go ahead and test the side effects and impact of this drug before I'm back at work. They also agreed that it's crucial to get me off the steroids as soon as possible too. This treatment will hopefully replace steroids! Whoo hoo! Sooo, tomorrow, with Zofran (nausea meds) on hand, I am starting my new treatment. Let's see what this body is ready to handle?! I know this medicine is going to be the ultimate answer ~ my body just needs to find the strength to handle it...