Shout out to the nurses in this video. You guys are awesome!

PS- Why didn’t I think of this?

To the nurse who is seasoned and confident.

To the nurse who forgets herself (himself) to care for others.

To the nurse who is tired.

To the nurse who looks into the eyes of the dying and says, “Everything will be ok, I won’t leave you.”

To the nurse who is overwhelmed.

To the nurse who is dedicated.

To the nurse who stops everything until you are comfortable.

To the nurse who says, “We will not give up on you.”

To the nurse who is diligent.

To the nurse who works well past her shift end.

To the nurse who smiles.

To the nurse who holds your hand.

To the nurse who stays up all night to make sure your loved one sleeps.

To the nurse who solves the problem.

To the nurse who calls for help.

To the nurse who the doctors love.

To the nurse who sees you at your worst.

To the nurse who makes a difference.

To the nurse who begins your life.

To the nurse who ends your life.

To the nurse who saves your life.

We thank you.

I use quotations to highlight the fact that there is no miracle medication. In fact, it has not even touched my pain.

And I’ve grown more sick.

About two weeks ago I developed tachycardia. My resting heart rate was anywhere from 100-125. And at times reaching the 145 mark. This has resulted in multiple ER visits, more specialist appointments, and overall frustration for this patient.

Because of the tachycardia, I had to stop taking the ‘miracle medication” from the Mayo Clinic. In fact, the doctors suggest I get back on a medication that I spent 6 weeks weaning off of.

The irony in the situation is I am right back where I was 2 months ago– pre Mayo. I’m in pain. I have debilitating symptoms: orthostatic hypotension, tachycardia, and shortness of breath.

My wonderful cardiologist agreed to see me the day after I called him at his home number. Luckily, I know him well from my church. He agreed to help me and see me through to the end. I should have called him 5 months ago when this whole ordeal began. He believes the tachycardia is an autonomic dysfunction. He isn’t sure of the cause, but believes it has something to do with my autoimmune thyroid disease. I need to see an endocrinologist. The first available appointment is June 8. sigh. It is funny, after being sick for 5 months, there are STILL specialities I have not seen.

And so I wait. Take medicine. And attempt to manage my symptoms.

I felt safe in the care of my internist at Mayo Clinic–if that makes any sense?

SBRN in the Atrium

Remarkably, they did not even ask for a copay. Money is never mentioned which leaves the patient feeling comfortable that their health is what is important.

Even though my experience at Mayo was great, I did not receive all the answers I was looking for–which left me devastated to say the least. I’m trying to hold it together now and look at the good side. They did find a few things wrong which I never would have known otherwise. Vit D deficiency and an auto immune thyroid disease. They also discovered that a few of the medications I’m on are causing many of my symptoms. I’m on a weaning program now–which will take a couple of months. Basically, I’m undoing what the doctors did for me here. Then I will add a different medication which *fingers crossed* will help the pain. After ruling out some big things, the doctors can only tell me that the pain is either idiopathic or post viral. This unfortunately was my worst fear. That I would go there and not get an answer. Though I am very upset, I need to remember that everything happens for a reason. Hopefully their pain management plan will work.

Chihuly in the Lobby

I cannot thank everyone enough for their support during this time. I’ve received so much love over the past few months, and I’m grateful to each of you.

To my readers- Your comments, tweets, emails, and facebook posts encourage me to hang on. I cherish each and every one.

To my coworkers- You guys are amazing. Getting together and collecting Sick Hours for me is so difficult to do. Thank you for sacrificing your hours for me (they collected enough hours to cover a month of work)! I needed it desperately. You all are truly an answer to prayer.

To my Mayo traveling friends- Words can describe how much you mean to me. I couldn’t have done it without you. Thank you for your sacrifice for me.

WIth that I end my chronicling of my journey to Mayo. Thanks for joining me.

I realize that once I start the story, everyone wants to hear the ending. You don’t run the 26 miles only to stop on the last .2 mile.

Forgive me, I’m not feeling well enough to put it all into words. But hang with me, I will finish! Give me some time to sleep and feel better.

More later.

We didn’t see any doctors. We sat in the waiting room from 7am to 11am. Then 12pm-3pm. Talk about a vacuum of time. Maybe this is why:

We left the room at 7am. After a week of little sleep, we were dragging. As we sluggishly approached the elevator, we see a little old lady getting in ahead of us. She sees us walking faster to catch it. She holds the door for us. As Kim maneuvers the wheelchair in the door, another nice old couple moves to the side to make room for us young-ins. Kim says, “15 please”. It seems we were all headed to the same floor.

Once we hit the 15th floor we were off. Kim allowed all the older people off the elevator before she pushed me off. The old couple and the old lady were walking toward the same desk where we were headed.

As I mentioned yesterday, we were taking advantage of a Mayo practice called “checking”–which means you get put on a list in first come first serve order, and see a doctor if someone cancels last minute or is a no-show. This means we HAVE to be first in line. Especially for immunology. With only a few doctors seeing patients, the likelihood of getting in is very low. If you aren’t first, you wait in vain.

Seeing the old couple and the little old lady heading to the immunology desk, Kim and I looked at each other and knew what we had to do. Kim begins speed walking (Note: Kim recently finished a half marathon in 2hours and 30 minutes by speed walking). I’m saying “Hurry, take the quick right and beat them around the corner.” We edge them out and get first in line. While laughing, I said to Kim, “I don’t even feel bad.” As the little old lady walks up behind us, Kim laughs, “I do”.

We are first on the list. Mabel checks in behind us. Is it karma we didn’t get called today?

After Rheum, I went to get my blood drawn: The two diagnostics the Rheum physician ordered, as well as the blood for the two research studies I agreed to.

Immunology is the last specialist I need to see. My appointment is not until Monday. We went to wait to see if we could get in early. This process is known around the Clinic as “checking”. If someone cancels last minute or is a no show to their appointment they pick people that are waiting in the order you “checked” in. We waited until 2pm today until they sent us away.

Came back to the room and crashed. (Crashed right after a mini breakdown). Still frustrated the nerve block didn’t work. Still frustrated I don’t have answers to my back pain that has been plaguing me since November.

Need to look on the bright side: As mentioned before, they discovered an auto immune thyroid disease that will be of benefit for me to know earlier rather than later–before my thyroid function decreases to dangerous levels. They have discovered a severe Vitamin D deficiency which will need to not only be replaced, but also investigated further to find the reason for the problem. Immuno will undoubtedly check for more immune deficiency problems further than the one I’ve already been diagnosed with. This will surely be helpful.

I hope to get back in to Dr. Hurt (the best internist I’ve ever seen) this week. Need to get the results to my thyroid ultrasound. Also need to address the back pain. If the nerve block didn’t work and the EMG was normal, we need to look for other reasons for the severe pain.

I am still in pain from yesterday’s needle fest here at Mayo. I hope tomorrow brings more hope than today.

EMG in the morning–where they basically stick needles in your muscles. They must have hit the spot as I have been in awful pain and spasms ever since. The doctor said everything looked normal. No nerve damage.

Next, I had an appointment with an anesthesiologist to help with the pain. She did a nerve block to the nerve roots in the area where my pain is–more needles in the back. More pain despite the local anesthetic. The block should have worked within 30-45 minutes. I was really thinking it was going to work. So that being said, I am not only in severe pain tonight, but also my spirits are down.

The nerve block was as much a diagnostic tool, as it was a pain relief procedure. That meaning, it is possible the reason for my pain is not what we have been thinking. And so we go on…

Tomorrow begins at 0800am with Rheumatology. We will sit and wait to get into Immunology early after that.

Frustrated. In pain. Tired.

Tonight, I’m trying to remember the hope I experienced yesterday.

It has been a long day to say the least. I’ll elaborate:

1. Physical Medicine- 07:00am. Pretty long, and unsuccessful visit early in the morning. I say unsuccessful because they pretty much ruled out anything physical causing my symptoms. For instance, there are no bones or muscles that are encroaching on a nerve. Nice doctors (we saw a resident and a MD), but they signed off my case and sent me on to my further appointments.

2. Sleep Medicine- 0900am. This appointment provided our comedic relief for the morning: the doctor asks “How many pillows do you use at night?” The night we arrived at the Marriott, we started hoarding pillows. Right now, as I type, i’m using 7. My friends also laughed at the fact that I took 2 to 3 hour naps every afternoon in high school and college. What can I say, I’m a sleeper! Either way, the doctor said they can’t test me for any underlying sleep disorders because of all of the medications I am taking. Nice doctor, but she signed off my case and sent me on to my next appointment.

3. Neurology- 1100am. Quick and easy. You may have an idiopathic radiculopathy. Those are gibberish words to those of you not in the medical field. Let me break it down: “You have pain from an unknown cause.” Excuse my sarcasm, thank you, THATS WHY I CAME HERE.

A little frustrated with the last appointment, we took a break to have lunch.

4. Internal Medicine- 12:45am. Back to the best doctor I’ve ever seen, Dr. Hurt. Went through consult by consult and described exactly what they came up with. He went through each lab, normal and abnormal. Finding further complications in my lab work, he ordered an ultrasound, more lab work, and a consultation with Rheumatology. He spent an hour with us. Listening. Answering every question that me and my entourage could come up with. After shaking our hands, he says, “If you have any more questions, you all know where I hang out”. Finally, a deep breath. I feel safe in his care. I know he will not leave any stone unturned.

5. Ultrasound- 1430pm. Despite the fact that my gown was missing a front tie and I had to awkwardly wrap it around my body, this test was a piece of cake. Waiting for the results is a different story. But all in all, there was a friendly technician, warm gel, and a pillow under my knees for comfort. Two thumbs up on the process.

6. Venipuncture- 1515pm. More blood work!

My patient experience today was overall very good. Excellent staff. The system is like a well oiled machine–and it works beautifully.

The excellent physicians believe they may have uncovered the reason for a lot of my symptoms. They may even be able to get rid of some or most of my symptoms.

More importantly, I lay my head on the pillow tonight with hope that they will give me answers before I leave.

I had to check in at 7am. The system ran beautifully. After the nurse ran my vitals and took my weight, we were given a beeper. When that goes off, they would bring me back to see the doctor. Because I was an add on for the day, we had to wait until a doctor had a cancellation. Less than an hour later, the beeper sounded.

I must say I was nervous walking back to the consultation room.

My initial consultation was with an internist: Dr. Hurt, ironically. I couldn’t help but wonder if he will be the one to fix MY hurts. He went through my symptoms systematically and diligently. No stone was left unturned. I finally was in front of a physician who did not rush. He took me seriously. He told me he would look for the Zebra that is causing my sickness. A breath of fresh air.

Music to my ears during the consultation: “I will own your case”. Not once in 3 months have I heard those words.

After the physical exam, Dr. Hurt sat down with me and my friends and explained what tests he was going to run and what specialists he wanted me to see.

In the afternoon, I saw an infectious disease specialist. He did not seem to think that my illness is connected to anything infectious. The big thing he said was that he did not think it was postherpatic neuralgia–which was the best guess of all my physicians at home.

To be honest, I was pretty upset after this consultation. I wish he had done more testing. But my friends reminded me that I need to trust his experience and intuition that what I am experiencing is not related to an infectious process. I do feel the need to bring up my concerns about the consultation when I see Dr. Hurt again on Monday.

Monday will be busy:

Physical Medicine. Sleep Medicine. Internist (Dr. Hurt). Neurology. Possibly Immunology–if I can be an add on.

Right now I’m in my hotel room. I’m very tired even though I’ve only been up a couple of hours. I’ll drift off to sleep to the sight of Jeremy Lin playing incredible basketball.