Day + 89, Paging Amy Lloyd

Beth was diagnosed in July with Primary Amyloidosis. Like most amyloid patients, she started out with some strange symptoms and underwent the cycle of visiting different specialists who couldn't diagnose the issues she was having. Then, she got lucky and found a doctor who knew about amyloidosis and made the link.

I've had the pleasure of conversing with Beth over the last few months, as she underwent the search to find a treatment center and set up an appointment for treatment. I was pleased to hear that she found a treatment center close to her home. But I was also excited that she has decided to share her experience with the rest of the world through a blog of her own, Paging Amy Lloyd.

Beth, in celebration of the start of your treatment and your blog, allow me to impart some of the wisdom that I've learned during my treatment these last few months -- things I wish I had known when I was in your shoes this summer.

• Learn to accept that during your treatment, things may occur unpredictably and out of your control. Your gains, your setbacks -- none of these things will be on any schedule. If you're a control freak like me, this will be all very frustrating. Treatment and recovery is a long process. Clear your calendar, and let your body pace your recovery. Let go of your outside worries and focus on you and your health... it will make things go smoother.
• Never underestimate the power of a positive mental state in your recovery. It is more powerful than any drug or doctor could ever be.
• While you are in the hospital, seek and befriend other amyloid patients. Speaking with others in our condition is very enabling and will give you strength.
• Record all your experiences -- even the bad and horrible ones.
• The drug Ativan will be your friend. Use it often. Whenever you are feeling bad, take one and go to sleep. Repeat as necessary.
• Be sure to keep a paper journal. Record things such as what drugs you took and at what time. You need this because you will forget sometimes. Keep track of which doctors and specialists you saw. This is necessary to because you will see a lot of them, and when the bills come you'll want to remember on what days you saw which people. Record stuff such as weight and how you feel each day. This is necessary to remind yourself of the progress you are making with your recovery.
  
• Draw on your friends in your support network -- don't be shy to ask for help or favors when you are in need. They will want to help you, and you will need to be helped during this process.
• Learn to like hospital food. In the end, everything will taste like chicken.
  
• Never, ever give up. Fight the good fight.

I encourage everyone to check out Beth's blog and wish her the best!

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Nothing as dramatic on this end. I'm three months out, after all. The good news is that my weight is high but stable until I see the doctor on Friday. On Monday night I took 120mg of Lasix, and boy, was that a shock to my system! I lost 4 1/2 pounds in 24 hours. If my kidneys work any more overtime, I fear that they may go on strike.

But the funny thing is that yesterday I took the same dose, and it didn't work as well. As a matter of fact, I gained a pound. But at least this higher dosage will hold me until Friday when I see the doctor.