FAQs

Hi All,

I haven't updated in quite some time, and for good reason.

Summer was dreamy.

I mean that it was the dreamiest dreamy dream that one could dream.

Michael opted to take on a light tutoring schedule and was home frequently. He helped around the house... as in he did the laundry and the dishes and made sure the boys did their chores. I LOVE HIM!

I started swimming three times per week. I cooked and counted calories and lost some weight. I pretty much took a nap whenever I felt like it. I was in heaven!

The rest and the help and my meds made me feel almost normal again. I say "almost" because, really, how normal can one be considered when she has to be waited on and sleep frequently to feel healthy?

Now, school is back in session. Michael has returned to a full-time work schedule, including a full day of teaching on Saturday. The boys are going through their fair share of teenage dilemmas. Bats infested our attic. I've had to travel back and forth between Georgia and Tennessee to help my dad restore two homes that were utterly trashed by renters. I think I have carpal tunnel syndrome because I can barely type this because my right hand hurts so badly. And my mother's health has been declining rapidly for 2 years now. My sandwich generation responsibilities are currently almost unbearable.

That may have been all the update you really need; however, I have received a number of emails, cards, and in-person questions about how I am doing with chemo and Lupus and all that jazz. So, here are the answers to FAQs I've encountered recently.

1. Are you still on chemo? Yes.
2. Is it working? Yes, but probably not in the way you're thinking or hoping. Most people associate the term "chemo" with cancer. Cancer is a potentially curable disease. The drug I take weekly is in the class of drugs used in chemotherapy for cancer; however, I am not on a treatment regimen like that used for cancer. I am injected with a very low dose weekly, which leads to...
3. When will it cure you? Chemo is not a potential cure for my disease. There is no cure for MCTD/Lupus. What it accomplishes is slowing my immune response in order to slow the production of autoantibodies. These are the critters that attack my healthy tissue. When the autoimmune response is slowed, my pain decreases and the likelihood of inflammation developing in/around a vital organ reduces. This both makes me feel better and decreases the potential for the life-threatening aspects of my disease to develop.
4. Has the doctor told you how long you will need this type of therapy? No. Most people with autoimmunity remain on a chemo drug for a long time. I have read about some who have remained on it for 3 or more years. My doctor will not estimate how long I will have to remain on methotrexate because I have an unpredictable disease. It does not manifest itself the same way in any two patients, and the outcome is never the same.
5. Will you go into remission? Probably. Most AI diseases are diseases of flares and remissions. However, will I ever go into a total remission? No. I will have to be checked and closely monitored for the rest of my life.
6. What will happen if you flare again after remission? I will have to go back on the medications I am currently taking, likely including chemo. I will be managing this for the rest of my life and will most likely be on and off chemo for the remainder of my life.
7. Does the chemo still make you sick? Not as much as it did during the first few months. I take huge amounts of folic acid which counter the side effects (that's why I also haven't lost much hair) and have learned how I need to eat and care for myself to counter the nausea. I still feel very tired and weak on Mondays (I give myself the chemo shot on Sunday evening).
8. How do you feel? I don't want to be grumpy, but the honest answer is HORRIBLE. That has more to do with the particular stresses of life right now and not MCTD. I have experienced tremendous pain relief since starting methotrexate. As I mentioned earlier, I started swimming over the summer. I have continued to go to the pool 3 times per week and swim for about an hour each time. I can do things in the water that I cannot do on dry land! I can also do things in the water that I could not have done, even in the water, just a few months ago. My mobility and energy levels are improving. At the same time, my world is filled with stressful situations right now, and they are all taking their toll on me.
9. How is your anemia? Better. The meds are helping, and the dizziness has subsided.
10. Have you tried ________? For just about anything you can fill in that blank with, the answer is "yes." 
11. How can we pray for you? Please pray for the things I mentioned earlier. To be a little more specific:
1. One of my sons is struggling socially. His social development has always been an issue but is really weighing heavily on me right now, to the point that I wonder if we should have him tested for Asperger's.
2. Pray for my mother. She is losing cognitive function and is doing things completely out of character for her. I feel like I lost my mother two years ago when these issues started, and yet, she is still here, acting in such a way that I no longer know who she is or how to relate to her. I feel like I need to mourn, but how does one mourn the living?
3. Pray that the houses in TN will be restored soon and will sell VERY quickly.
4. Pray for the pain in my right hand and arm. I will see a hand specialist next Tuesday. Pray that he will have wisdom and not just assume this is autoimmune-related but will do a thorough examination.
5. Pray that we will soon have all the renovation work complete at our own house... an 8 year project that needs to end soon.
6. Pray that I will have continued success with methotrexate and that my lab work will continue to be good. There have been good improvements each month.

Thank you for your love and continued prayers.

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