Good News

Just a health update on me:

Since January I have been receiving IV immunoglobulin treatments once every 2 weeks while I taper off prednisone very slowly. I went to lowering my dose 1 mg every 2 weeks to 1 mg every 3 weeks, and now, at 5mg, I am lowering it 1mg every 4 weeks. That seems painfully slow, but it is working. So far, no big reaction. Each time I lower the dose it's a bigger step for my body to adjust, because 1mg was 1/10th of 10mg, but it is 1/5th of 5mg. Earlier this summer the rheumatologist raised my dose of IVIG slightly to help me over the spot where I had the relapse last time, which was around 7-10 mg of prednisone.

I continue to have mild rashes, but my muscle strength is recovering well. I no longer need physical therapy and have just begun working with a trainer at the local gym designing a program just for my needs. That is not to say that my strength is normal--the muscles that were affected the most are still pretty weak (for example--I am able to lift 3 lbs. in each hand doing shoulder presses above my head--prior to this illness I could do sets of 20 lbs. in this exercise) but they are improving. I am able to run again--I can go 1/4 mile without stopping now, and do a total of about 2.8 miles of a run/walk combination where I run 2/10 of a mile, walk 1/10, alternating.

I saw the rheumatologist last week and he is very pleased with my progress and has said I can slow down the pace of the IVIG treatments to once every 3 weeks. I will soon be starting an experimental treatment called low dose naltrexone which he wants to put in place to help me remain in remission once I am totally off prednisone.

The rheumatologist also told me that this is an illness that generally runs it's course, and his job is to shepherd me through it without too much damage to my body. I told him that I know of people who have had it recur sometime later, and he said that they must have been exposed to whatever triggered it again. Since most people don't know the cause/trigger that isn't that helpful, but I can only hope that once it is gone it will remain gone FOREVER!

So my prayers are being answered! If you have been praying for me, THANK YOU!! And please don't stop!

Zipperhead

Yesterday I rushed off to a morning appointment with the rheumatologist. I was pleased that he spent lots of time with me, answered every question I had about all of the recent bloodwork I've had done, and all of the reading I've been doing on less common alternative/"fad" treatments, even browsed through a paper I'd printed off from a medical journal with a new theory in it. Bottom line about my condition at this moment: Since my rashes have been slowly increasing and my muscles have been getting sorer over the past few weeks, we decided that it would be unwise to decrease the frequency of my IV antibody infusions AND keep tapering the prednisone. He said it was up to me which one to reduce, so I chose the prednisone, since although the antibody treatments are inconvenient, they have no negative effects on my body. (I recently discovered that after almost a year of taking steroids with seemingly no side effects, I am now beginning to have some--thinning and receding hair, and zero production of testosterone and dhea, critical hormones. I'm taking supplements of those hormones now). So I will continue tapering the prednisone, albeit a little more slowly, reducing the dose every 3-4 weeks instead of every 2, and continue the treatments every 2 weeks but at a slightly higher dose (which means I'll sit there an additional 45 minutes).

Next I ran a few errands, then returned home and took on a huge project--cleaning T. and I's room. It was messier than anything I've ever seen. The floor was literally ankle deep in clothing and garbage--crumpled papers, candy wrappers, you name it. Overlaying all of that was about 10 balls of yarn, half unrolled and tangled together forming a spiderweb around the room. Every other surface in the room was covered as well. I neared completion shortly after I. returned home from school. Instead of being appreciative, she was upset that I'd cleaned her room, although I had been warning them that this would happen for several weeks. After arguing with her, I carried a large bag of trash and a pair of razor sharp kitchen scissors down the stairs. When I got to the bottom of the stairs, I twisted my ankle on the pair of shoes left there by L. and fell, hitting my head on a large cedar post at the foot of the stairs. Luckily I was not impaled by the scissors, but did give myself, as the ER dr. described it, a "closed head injury."

I now have 6 staples in the back of my head, which I will have for a week. I received a tetanus shot and a CT scan. Thankfully, I do not have a concussion. I am also grateful that I did not need to have the hair shaved around the cut, since I am already having hair issues!

My next treatment is tomorrow and I am actually glad, so that I can have a restful day. The ER dr. told me to take it easy and not lift anything heavy, LOL. I have a 35 lb. toddler!

Silly sun gear

Silly sun gear, originally uploaded by PaulaK.

Since the sun seems to exacerbate my rashes, here I am with my hat and sunglasses, fully sunscreened. At least this hat is light, has built in spf, a string to keep it from blowing away, and is comfortable. Last year I had a straw hat that was hot, tight, heavy and blew off my head easily.

Cutest little wetsuit wearer ever!

Cutest little wetsuit wearer ever!, originally uploaded by PaulaK.

Cutest Baby on the Beach

Cutest Baby on the Beach, originally uploaded by PaulaK.

M. loved the beach. I bought everyone a wetsuit since we knew the water would be cold and the air wouldn't be all that hot. They turned out to be useful since we had unseasonably cold weather.

Ready to parasail!

Ready to parasail!, originally uploaded by PaulaK.

We also visited Myrtle Beach during spring break, and I did something I've always wanted to, parasail! Here are D., L, me and J. waiting our turn.

At the Top

At the Top, originally uploaded by PaulaK.

Here we all are at the top of the Chimney Rock trail. Front row: T., I., K., and A.
Back row: Paula, D., L., J., Daryl and M. in the backpack.

At the Falls

At the Falls, originally uploaded by PaulaK.

We drove down to Asheville, NC for spring break. This is J., L. and D. at a waterfall near Chimney Rock.

Prom 2009

Prom 2009, originally uploaded by PaulaK.

We hosted a before prom photo shoot at our house, as well as an after the prom party. Aren't these kids beautiful? Not all of them attended the party. It was just 3 couples, and the other 2 girls (not D's date) had to be home earlier because they were sophomores. After they left, it was 3 guys and 1 girl!

Prom 2009

Prom 2009, originally uploaded by PaulaK.

D. went to the prom this year with his girlfriend, M. They both looked fabulous.

Another Health Update

Boy, it's been a long time since I've blogged! I've meant to, but somehow...

I have been feeling really well. I am still doing the IVIG treatments once every two weeks and they still seem to be working. I am still doing PT and am slowly regaining strength. I have been very active, and very happy. I am back down to 9mg prednisone daily, and start on 8mg tomorrow. I am nervous about this because that is the level at which the really bad rash appeared last time. I have had some minor spots of rash here and there as I have tapered, and some areas which just never went away, like on the backs of my hands and my elbows. To me, this means the disease is still active. If it were not, then nothing would happen as I tapered the prednisone. I am worried that if I discontinue the treatments entirely, the disease will come roaring back. Only time will tell. The plan is that I will reduce the frequency of the treatments to once a month in June.

Meanwhile, there is a lot of complicated medical stuff that I have been researching related to possible causes/cures/treatments that I want to discuss in detail with the rheumatologist at my next appointment.

Medical appointments and taking care of myself (PT, IVIG treatments, massage, acupuncture, rheumatologist, exercising regularly) still comprise a half time job. It is good to focus on myself, I guess, and I know that I am lucky that I can make the time and can afford the complementary medicine as well as the traditional.

Please keep me in your prayers as I continue to taper the prednisone.

Troubles with Babyzilla

Our darling baby has turned into a toddler terror. His favorite activity at the moment is hair pulling. He will grab 2 handfuls of long hair and pull as hard as he can. He is very strong and it is very difficult to get him to uncurl his fingers. A. is his most frequent victim since she is the easiest target. He prefers to strike from behind since it is even harder to get him to let go then without assistance. Yesterday he was circling me like a shark, trying to sneak up from behind.

I know it's attention getting behavior, since usually 2-3 people run over to help the screaming victim. M. thinks this is hilarious. I have tried the following negative consequences: one minute timeout (he hates it but immediately tries to pull someone's hair when you release him), pulling his hair (thinks this is funny and will pull his own hair), a swat on the bottom or a slap on the hand (thinks this is funny too). Obviously I don't want to really harm him, and I don't believe in spanking especially when the child is only 15 months old, but this is a serious problem. Anyone out there been through it and have any suggestions?

I have tried spending more positive time with him, but recently while snuggling and kissing him, he grabbed my hair and ripped out a large handful. I was incensed. Since Daryl basically has no hair, he has been trying to spend more time roughhousing with him.

Boredom is another issue. Due to the weather, he rarely goes outdoors. Since he doesn't behave that well in the car (screams) or in stores, and I have a plethora of babysitters, he rarely leaves the house. If he does go somewhere, it is often a roundtrip to pick up a sibling where he doesn't get out of the car. Such is the life of the eighth child. Anyway, we believe he is bored and that may contribute to the hair pulling, so are attempting to get him out more. Also, if he gets more practice he might behave better in public. Right now it is an endless cycle--why would I take a difficult child with me if I don't have to? How will he learn to behave better without any practice? And so on....

Valentine's Day Visitor

We had an unwelcome guest this Valentine's Day--the stomach flu! D., L., and I were all stricken. Needless to say, it wasn't very romantic. Daryl worked hard taking care of the troops, and I rested in bed. It was the only true "sick day" I can remember having in my 16 years of parenthood. Usually Daryl is at work, or out of town, or sick himself, and I don't have the luxury of laying around and not having to take care of anyone. I did nurse M. and put him to bed, but that was it.

I did a Valentine's Day redo on Monday, featuring a nice family dinner of spareribs, roasted potatoes, and salad, with the traditional heart shaped butter cake frosted with whipped cream and decorated with fresh raspberries for dessert. See the archives if you want a photo!

I'm Improving!

The title says it all. The new treatment seems to be working, although we won't be sure until I have tapered down to a lower dose of prednisone, but I feel the best that I have in 7 months. My range of motion has returned, along with my energy and stamina! I am exercising and doing PT again.

I started with weekly IV immunoglobulin treatments for a month, and then my rheumatolgoist reduced the frequency to once every 2 weeks. They do take 5-6 hours, which is inconvenient, but worth it. The "liquid gold", as I call it, seems to be helping. Hopefully I will be able to reduce the frequency to once a month, and maybe even discontinue it entirely.

Thanks for your prayers, and please keep praying that as I taper the prednisone (at a rate of 1 mg every 2 weeks) I don't experience a flareup of symptoms.

For the moment, life is great. I am enjoying life and my family again.

, originally uploaded by PaulaK.

Yum!

Yum!, originally uploaded by PaulaK.

Happy Eater

Happy Eater, originally uploaded by PaulaK.

To say that this boy eats with gusto is an understatement.

Nell Dorr Baby in Bed

Nell Dorr Baby in Bed, originally uploaded by PaulaK.

Nell Dorr

Nell Dorr , originally uploaded by PaulaK.

Nell Dorr

Nell Dorr, originally uploaded by PaulaK.