Wednesday, September 21, 2011

Praise, praise, praise!

I am in remission!!!  \o/    My CPK numbers have been dropping over the past several months, and they are the normal my dermatomyositis is now in a drug-induced remission!  And that is the first step to a drugless remission!  

Starting tomorrow, I will be cutting back on the prednisone (hurray...maybe I lose all this weight I have gained!!!), but not the methotrexate (yet!).   Prayers that the remission continues as I decrease the medications are much appreciated!

Wednesday, September 14, 2011

Invisible Illness Awareness Week 2011: Part 2--30 Things About My Invisible Illness You May Not Know


The Invisible Illness Awareness website encouraged those of us living with invisible illnesses to tell you 30 Things About My Invisible Illness You May Not Know

So here we go..........

1. The illness I live with is:   Well, I have 3--Dermatomyositis, Interstitial Lung Disease, and Raynaud's Phenomenon.   DM causes deterioration of the muscles in my body and often involves itchy, red rashes on the face, scalp, neck, back, and/or chest.    ILD involves excessive scar tissue building up in the lungs.  Raynaud's is a type of poor circulation in the hands and feet.

2. I was diagnosed with it in the year:  late  2003?

3. But I had symptoms since:   very early that year

4. The biggest adjustment I’ve had to make is:   Knowing when to say no or when to quit

5. Most people assume:  I have a lot of pain (I did initially, but not nearly as much now.) 

6. The hardest part about mornings are:   Getting up if  I haven't had enough rest.  Sometimes I just crash and sleep for many hours.   But most mornings are OK for me, it's the afternoons when my strength wears out and the weariness sets in.  Some nights, it's all I can do to walk up the steps to crawl into bed.

7. My favorite medical TV show is:   I don't watch much TV; I have no idea what medical shows there even are.

8. A gadget I couldn’t live without is:    my Pampered Chef can opener makes life so much easier!  (Not a "gadget" but I couldn't live without my girls or husband carrying heavy things or opening things I don't have the strength to open!)

9. The hardest part about nights are:   When I have little strength left to get up the steps to bed......or when the drugs cause me not be sleepy until 3 a.m.!

10. Each day I take __ pills & vitamins. (No comments, please)   Varies, as I have two meds that I only take once each week, but usually around 20 each day. 

11. Regarding alternative treatments I:   Have looked into them.  I am currently only LDN (Low Dose Naltrexone).   I want to give the Antibiotic Protocol a try.

12. If I had to choose between an invisible illness or visible I would choose:   Tough call.  I'm not sure really. 

13. Regarding working and career:   I can't imagine working with an chronic illness.  I can force myself to go, go, go/do, do, do for a few days.....can't imagine doing it every day!  I'm so blessed to be at home schooling my girls!

14. People would be surprised to know:  Hmmm.  Let's see....I don't know, how about....  
  • That I have numb places on my toes because of nerve damage from having Raynaud's?   
  • That my body no longer regulates its temperature very well.....I often don't know just how cold/hot I am until I am extremely cold/hot.   
  • That one of my medications is a self-injection?    
  • That I've lost A LOT of hair due to the medication.  I've always had thin hair, but used to have quite a bit of's very thin now.  Off and on over the years, I have done a few rounds of Nioxin to help it grow back.  I started another round recently.

15. The hardest thing to accept about my new reality has been:  That I have to say no to some good, worthwile work, extra school activities, etc. 

16. Something I never thought I could do with my illness that I did was:  Homeschool.  One of my first thoughts was "How am I going to homeschool?  Will I have to put them in public school?   (See my other post this week on why I think homeschooling is the only thing that makes sense when you're chronically ill!) 

17. The commercials about my illness:  There are commercials about dermatomyositis (or myositis in general)???   Point me to one! 

18. Something I really miss doing since I was diagnosed is:  being able to get up from kneeling or from a squatting position.  My legs just barely have the strength to do it. 

19. It was really hard to have to give up:  Milk and wheat.  Almost 2 years ago, I decided to try cutting out some things to see if I felt better.  And I did!  But wow, milk and wheat are in so many things!  It's given me a true appreciation for those with Celiac who must avoid wheat.  You wouldn't believe what all wheat is hidden in....things you think shouldn't even have wheat in them at all!! 

20. A new hobby I have taken up since my diagnosis is:  Blogging?  Can't really think of anything. 

21. If I could have one day of feeling normal again I would:  Hike and camp more! 

22. My illness has taught me:  to rely more on Him, the one who strengthens me.

23. Want to know a secret? One thing people say that gets under my skin is: I can't really think of anything.  Sometimes I get irritated when folks think I am unable to do something.  (Granted there are times I can't, and other times I can.  I know they love me and are concerned about me.)

24. But I love it when people:   Treat me normal!

25. My favorite motto, scripture, quote that gets me through tough times is:  Philippians 4:13......I can do all things through Christ who strengthens me. (NKJV)

26. When someone is diagnosed I’d like to tell them:  Hang in there.  It definitely is a major adjustment, but it'll be OK.  Rely on God instead of yourself, seek Him, and rest in Him.  He's in control and this was no surprise to Him.  Something about this trial of yours will be for His glory and that's worth it. 

27. Something that has surprised me about living with an illness is:  That I have a lot of good days where I don't even think about it.

28. The nicest thing someone did for me when I wasn’t feeling well was:   When I was first diagnosed, my homeschool group prepared meals for several weeks.  It was a very humbling experience, but I soooo appreciated it!   It was an amazing blessing to me and my family!

29. I’m involved with Invisible Illness Week because:  I want to get the word out.  I don't think people realize just how many folks have an Invisible Illness. 

30. The fact that you read this list makes me feel:  Honored and humbled that you cared enough to read 30 facts about little boring ol' me!



Check out her blog and learn about her homeschooling life
with Lupus and Fibromyalgia.


Monday, September 12, 2011

Invisible Illness Awareness Week 2011: Part 1--How can you homeschool with a chronic illness?


This week (Sept. 11-17) is Invisible Illness Awareness Week.

It's been 8 years, I think, since I was diagnosed with three (relatively) Invisible Illnesses.  I've homeschooled during the entire time.   A common question is How?  How can you homeschool with a chronic illness?

Well, in many ways it's easier.  I honestly can't imagine my girls in a public school setting.  I'd have to make sure they were on the bus at a certain time--whether I felt like getting out of bed or not that morning.  I'd have to worry about how I'm going to get them various events or help them sell fundraiser items--whether I felt like it or not.  I'd have to help them with their homework--in the evening, when my strength is all but gone.  And with the girls in public school, who knows what virus they'd bring home to wreak havoc on my suppressed immune system!

Yes, homeschooling is a huge commitment and it's definitely not an easy road, but it's the best for our family. Think about it.....I am free to choose curriculum that best suits me and my girls.  I can school around the bad days.   I can even do school while laying in bed or on the couch if I have to!  During the time I was going through testing to see what was going on, this is exactly what I did most of the time.  The girls could snuggle up on the coach or bed with me while we did Five in a Row.  They learned a lot, despite by not feeling well!   And they learned about compassion and that many hands make light work. 

Homeschooling is the only thing that makes sense for our family!