Thursday, September 19, 2013

Auto-immune Update

Last week was Invisible Illness Awareness Week. I had a tough week because of my invisible illness, Lupus, and didn't get this post up in time. Nonetheless, I want to take advantage of a meme going around to raise awareness so that I can update you all on my status.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: My "probably lupus" status has been upgraded to definitely SLE. I also have RLS and migraines.

2. I was diagnosed with it in the year: 2012

3. But I had symptoms since: answer has changed since I was diagnosed. I originally said they started when I was 19 (in 1992) but as I have read about others' experiences with Lupus, I have come to realize that I really experienced the first symptoms at about 8 years old. 

4. The biggest adjustment I’ve had to make is: to limit the number of plates I keep spinning each day. That's hard because my illness(es) wax and wane. When I'm feeling well, I have the energy to keep many plates spinning. However, when I feel poorly, whatever plates are up are bound to come crashing down. The mess is easier to clean up if I keep it simple to start with.

5. Most people assume: that I feel so bad all the time because I'm overweight. If I could just get my act together, get off the couch, and shed a few pounds, I would be as good as new. I wish it were that simple. However, let me clarify that "most people" are not those in my inner circle: my church family, homeschooling homies, and life-long friends. They have shown an outpouring of love and support which overwhelms me.

6. The hardest part about mornings are: EVERYTHING. Even on good days, I wake up feeling like gongs are going off inside my head. Most days I am very stiff and sore for about an hour after waking and look like a new-born calf when I walk. I have to factor in lots of wake-up time when deciding on what time to set my alarm the night before.

7. My favorite medical TV show is: ???  I'm not much of a t.v. watcher, and medical shows have always been my least favorite. Sorry. 

8. A gadget I couldn’t live without is: my heating pad. My muscles cramp and ache severely in the evenings, and I frequently chill... need I say more? :)

9. The hardest part about nights are: twitchy legs. I have Restless Leg Syndrome, too, and my legs start dancing and kicking as if they have a mind of their own around 8 p.m. each night. That causes huge sleep problems.

10. Each day I take: 9 prescriptions and a slew of vitamins/supplements. I just began immunosuppressive therapy and am taking a med used in chemo. The possible side effects, like hair loss, have me a bit on edge. (no comments please) 

11. Regarding alternative treatments I: ... sigh. This is a sore spot for reasons I don't need to air on the internet. My only comment is that deciding on a course of treatment is a difficult and personal matter that I truly doubt anyone takes lightly. Each patient should be free to follow her conscience whether she leans toward alternative or "allopathic" medicine.

12. If I had to choose between an invisible illness or visible I would choose: neither. Both stink in their own ways. That's like choosing between the proverbial rock and hard place. ;) 

13. Regarding working and career: My career is home educating my kids and teaching homeschool classes. There are days I feel like throwing in the towel. I just can't do it as well as I want. Yet, in those times, it seems I always get a big reminder about how important my kids are... how they will be grown and starting families of their own before I know what has happened... how much other homeschoolers appreciate me... or a million other wonderfully important things. It makes the sacrifices and struggles worth it.  I'm learning to take it one-day-at-a-time because long-term decision making is not healthy for the chronically ill. As God wills....

14. People would be surprised to know: I have a real and on-going struggle with anxiety. It's linked to my condition. Sometimes I feel like my head is about to explode from the nervous stimulation within my body and I just can't process any input or stress. I have to go into my hiding place and breathe, pray, read the Bible, and just "be" until the battle within ceases.

15. The hardest thing to accept about my new reality has been: there is no normal. Some days I feel great... and it shows. Some days I feel lousy... and it shows. I'm learning to be real and let people know exactly how I feel-- not in a grumpy, leave-me-alone sort of way, but also not in the Southern polite, "I'm just fine, honey, how are y'all?"-way either. I'm learning it's okay to say, "Thanks for asking. I am having a tough day and would really appreciate your prayers." I'm also learning to say, "Hey, I'm doing great today. Thanks! Praise be to God!" without feeling the need to keep up an all-too-happy appearance all the time out of fear of how I am perceived. In other words, I refuse to be inhibited by the invisible illness stigma.

16. Something I never thought I could do with my illness that I did was: get a diagnosis! It took me nearly 20 years of actively seeking one. I have a great team of doctors now and am so thankful!

17. The commercials about my illness: don't exist. Not for lupus, at least. Now, I know you've seen the RLS one and laughed. ;)  The condition is NOT as funny as those commercials. :)

18. Something I really miss doing since I was diagnosed is: nothing. My life didn't change drastically because of my diagnosis. I had lived with the symptoms of my condition for so long and had suffered so much that my life has actually been much better since diagnosis.

19. It was really hard to have to give up: the cello. I love to play but it hurts my hands so badly. 

20. A new hobby I have taken up since my diagnosis is: organizing meds. Lol! Seriously, I haven't taken up a new hobby, but my favorite hobby of bird watching is really helpful. It keeps me moving just enough to make me feel stronger without bringing on debilitating pain later. Taking in fresh air helps lift my spirits and lower anxiety. It lets me be in a quiet, introverted space which clears my mind, and observing the creation reminds me of how great the Creator is. I need daily reminders that God is greater than my condition and sovereign over all things, including lupus.  

21. If I could have one day of feeling normal again I would: I'm not sure. I think I have struggled for so long that I don't know or remember what "normal" is. I think I would just relish whatever "normal" feels like and be incredibly thankful not to have to feel chronically ill for that one precious day. I do look forward to the day that Jesus Christ "will transform (my) lowly body to be like his glorious body, by the power that enables him even to subject all things to himself."  (Phil 3:21)

22. My illness has taught me: that I am not God. I struggle to forgive people who don't understand my condition. Yet, God so loved the world that He gave His only begotten Son that whosoever believes in Him will not perish but have everlasting life. If I could snap my fingers and make my suffering go away, I would do it in a heartbeat. Yet, Christ humbled himself by becoming obedient to death- even death on a cross. He secured the salvation of all Christians through suffering. He is my sympathetic High priest, and I encourage you to taste and see that he is good. (John 3:16, Phil 2:8, Heb 4:14-16, and  Ps 34:8)

23. Want to know a secret? One thing people say that gets under my skin is: (sorry to say this, but...) giving advice or comparing my illness to their less serious conditions. Again, this only makes me keenly aware of how much greater the Lord is than I am. He endured suffering far worse than mine, and yet He is sympathetic and caring toward me in my condition. May He grant me much grace to be gracious.

24. But I love it when people: understand the wild swings that accompany my illness and understand when I'm not at my best that it isn't for show or sympathy. Those of us with invisible illness really do struggle with worry that we're not being taken seriously or that we seem like hypochondriacs or that we're using our illness as an excuse. When you just get it, we just love you!

25. My favorite motto, scripture, quote that gets me through tough times is: But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 2 Cor 12:9-10

26. When someone is diagnosed I’d like to tell them: to find rest in God. To do what pleases Him and not what you think you have to do. Don't wallow in self pity but also don't keep up appearances. This life is not about the pursuit of happiness, the accumulation of stuff or living up to artificial standards imposed on us by others.  This life is about enjoying and glorifying God, whatever our personal circumstances, and if we will seek 1st His Kingdom and His righteousness, all other things will be added unto us-- including the grace to live with chronic illness. (Matt 6:33)

27. Something that has surprised me about living with an illness is: living with it has gotten so much easier since my diagnosis. It helps SO much to be able to put a name to it other than "mysterious pain syndrome." My doctors treat me completely differently than they did before. When I go in with a problem... they are ON IT! No more tests or lectures... just help. It is amazing!

28. The nicest thing someone did for me when I wasn’t feeling well was: lots of things, but I have to give my husband the biggest props here. My illness affects his life as much as it does mine, and he is truly living out "in sickness and in health." I'm a spoonie and he's my dish. I'm glad he ran away with me, even if the running has become hobbling.

29. I’m involved with Invisible Illness Week because: I decided to post this because it has really helped me to read others' experiences.  I think that everyone who takes some time to share his/her story is actively helping those who are in the same chronically ill boat. My love and prayers are with those of you who suffer silently.

I also want to let you know about my new blog where I will be updating my friends and prayer partners on my condition: I'm a Little Lupie.

30. The fact that you read this list makes me feel: thankful to have a friend like you, one who takes time to listen and to understand. Thank you!



Heather said...

ROCK ON DAWN! Thanks for this awesome post. I am still your biggest fan. I love you!!!

Homeschool Dawn said...

Thank you! I love you, too.

Kellie said...


I was just visiting with my mother-in-law and she was talking about the Esther verse "for such a time as this" and that's all I was able to think about reading your post. It's a mystery why it took so long to get a diagnosis, but it's clear that now God is using you to educate and encourage others as you go through this. I'm praying for you!

Homeschool Dawn said...

Thank you, Kellie. That is a really good verse for my time. I can't claim to know the mind of God, and His purposes are probably far more than I can comprehend, but one reason for the 20 + years stands out to me: my boys. Having read so many accounts of treatment stories of 20-something's, I am doubtful I would have had kids. I always felt terminally ill when pregnant & just thought I was a whimp. I now understand that it was really hard on my body. God has been good to me!

Homeschool Dawn said...

Thank you, Kellie. That is a really good verse for my time. I can't claim to know the mind of God, and His purposes are probably far more than I can comprehend, but one reason for the 20 + years stands out to me: my boys. Having read so many accounts of treatment stories of 20-something's, I am doubtful I would have had kids. I always felt terminally ill when pregnant & just thought I was a whimp. I now understand that it was really hard on my body. God has been good to me!