I had noticed late last year that I kept getting these little rashy places here and there on my face. I figured that I was allergic to this cleanser, or that moisturizer. It started as a small spot under my left eye, that just looked a little burned, but then got a little more aggressive around the first of December with a spot above my upper lip. (Crap, I thought - I'm getting a cold sore - even though I'd never had one.) I got used to using a salve under my eye and over my lip. Then my left hand got a rash all over the back of it. Itchy and dry. Fast forward to mid-January and my entire neck erupted in a red rash that was so itchy and dry I could hardly bear it. That was when I got serious about trying to figure out what was causing it.
I have a friend who is an acupuncturist, and she thought maybe she could help calm it down a bit. That was about the same time I counted back through the past 6-7 months, and realized that it was just after I started a new drug for my rheumatoid arthritis that the first rash/burned place appeared under my eye. I suddenly realized that it was the Orencia that was causing all of my misery. Too bad, too, because it had taken about 4 or 5 months for it to take effect enough that my fingers weren't puffy little sausages. What to do now? Well, for starters, I called my rheumatologist to see what could be done, and I found out that what could be done was not much. I was told to stop taking Orencia. When I asked what would take it's place, I was told to take Tylenol for pain. SERIOUSLY??? If you've never experiences an RA flareup, let me be the first to tell you that it's excruciatingly painful, and Tylenol would be like spitting at it. So I did what anyone would do, I think: I started to cry. Undaunted, my doctor told me that it was the only way to tell if that was what I was allergic to. The conversation pretty much went downhill from there. I could see that I wasn't going to get any help there, and it was kind of a stunning realization that I was on my own.
I called my acupuncturist friend (Mary) and Mary told me that she could definitely help me with pain. So that's what I've been doing the past 2 months. I quit taking RA meds immediately and I haven't looked back. So far, so good, as far as pain goes. I have accupuncture twice weekly, and I haven't suffered any flareups. Excellent. The rash, however, lives on.
*Addendum* - I forgot to mention before that I also took a very expensive blood test to tell me what my body was getting so flared up about in the first place. So - in addition to acupuncture, my diet is also greatly restricted. NO gluten, NO eggs, NO dairy. At all. It's quite sad, because I love cake. However, I do NOT love pain, so it's a good tradeoff. I just wanted to add that in case anyone out there thought that acupuncture alone would solve an RA problem. I don't think so. You have to stop eating what is making your body sick.
About once a week, it will erupt and my face and neck get red and blotchy. And itchy. And very very dry and peely. Skin flakes off and peels off in rather alarming pieces. It's gross, and I feel disgusting. Then, slowly, everything calms down, the swelling almost goes away, and I maybe have one day where I can wear a little makeup and look like a human before the cycle starts over. Now, I have noticed that in the last week and a half, my neck has calmed down considerably, and I seemed to have more good days in between the bad as far as my face goes. I'm drinking water like a fiend, I'm doing footbaths with Redmond Clay to pull the toxins out, and last night I tried an icepack on my face that felt like it was on fire. THAT was the best thing yet. The icepack felt so wonderful, and the swelling around my eyes seemed to go down quite a bit. I actually can't close my eyes evenly, there's that much swelling. And my right eye has freakishly long eyelashes, while my left lashes are a normal length. Not sure what that's all about.
Needless to say, I don't go many places unless I can wear big dark sunglasses. I can see people do a double take at my face, but most won't say anything. But I see them looking. And wondering what the heck is going on with my face. It's awful. It's embarrassing. It's like I just keep having chemical peels. However, when I'm done with this I should have wonderful skin that's smooth as a baby's bum. That's what I keep telling myself, anyway...
The other thing that's going on is that Dad is slowly going downhill. He's just gotten so weak. He got so all he could do was lay around on the couch and sleep. He'd get up to eat and/or to hobble to the bathroom, but that was pretty much the extent of any activity. My mom was getting so worn out and tired trying to help him.
Mom and Dad in better days - with Mia and Hayden about 5 years ago.
Then a few weeks ago, he developed a heart arrhythmia - AFib. He had a cardioversion and we had high hopes that he would snap back into rhythm. Instead, after a couple of days he became very swollen, and his lungs were filling with fluid. He had developed congestive heart failure. So back to the hospital he went last week - the day my brother arrived from Utah. Dad spent the week in the hospital, and my brother was a much appreciated extra hand with all of the details. At the end of last week, Dad was transferred to a skilled nursing facility - too weak to go home for my mom to try to care for.
In the days since, we've tried to make sure he gets plenty of phone calls and visits. He was not happy he couldn't go home, and accused my mom and brother of not wanting him to go home. Mom is slowly coming around to the idea of hospice and home care for at least 8 hrs a day - although we (the siblings) are all thinking he will need 24 hour care. Mom just won't be able to handle him herself - not even at night. I don't think he'll be able to go home and get up in the night independently if he needs to. And Mom won't be able to help him - even if she does hear him. (She takes her hearing aids out at night). So the trick is getting her to come around to seeing what needs to be done, when she doesn't really want to face that reality right now. She gets a little prickly with us, saying that she wants to make her own decisions. But because she's not ready to make those decisions, they never quite get made. It's a frustrating place to be in. She won't (or can't) take the reins and make choices, but she gets mad when we try to do it for her. Kind of damned if you do, and damned if you don't.
In the meantime, Dad is safe in the facility, but it makes my heart hurt for him to be there. He just wants to come home. His thinking isn't always rational, and his memory is even worse, but he does live for visits and phone calls. And we try to make sure he gets plenty of those. I can't get down there much during the week - my work schedule is hectic right now, and then I get caught in traffic. And I also need to take care of ME and make sure I'm getting the exercise I need, as well as keeping my stress levels lowered as much as possible. (If that's even possible... I seem to always be stressed these days.) So weekends will have to be my Dad time, and maybe that will let the ones who live down there have some time off. There is no perfect balance, I'm finding.
I take my essential oils down with me, and give Dad relaxing foot massages. His poor feet are so white and cold when I start, but when I finish they are pink, and the room smells like a spa.
And then he tells me how wonderful my sister in law is (the one who lives close by and goes to see him almost every day...) and how she is the one who gets everything done for him. *hanging head* I can't win here, clearly. All I can do is what I can do. Truth is, Jill IS a lifesaver. Jill DOES get things done. Jill's an amazing person, and very goal driven, and I appreciate the heck out of her. But once in a while, a daughter likes to hear how wonderful SHE is, you know? Meh. Whatever. My husband thinks I'm a pretty good deal, and that's good enough for me.
So that's what my life has been like the past two months. Stress on stress. Rash face and sick dad. I cannot wait for the rash part of it to be over, and I'm hoping it starts winding down soon. I was told that when the medicine was out of my system I'd stop reacting to it, but WOW it's taking a long time!
I almost forgot the one bright shining star in my life. Zach and Katie are nearing the end of Zach's residency. He has been interviewing for his first big job in psychiatry. I was so sure he would choose a job in Arizona. I was resigned to it. But guess what? He is taking a job in Ventura, CALIFORNIA! I am so SO proud of him! He didn't have one bad interview - everyone wanted him, and they were all great offers. But this Ventura one is really great, and I just love that area of California. It is about 2 1/2 - 3 hours north of where I live, and it's just a wonderful beachy town. I would live there if I could. And now that Katie will be there, maybe we'll think more seriously about retiring up that way. I am beyond excited to have the kids that close! It's been a long haul of having them far, far away - from Puerto Rico to Arizona to Massachusetts. This is going to be awesome being able to go up for weekends, and having the kids down to visit us for weekends or days in the summer. So come July, that's where my joy will be. I will have my every two year's 60 days off starting mid-July through mid-September so I plan to spend a good amount of time up there helping them get settled in. Something to really look forward to. In the meantime, New England is giving them a good send-off. They've "enjoyed" over 108 inches of snow this winter! I think those Ventura beaches are sounding better and better to Katie.
All of these little New Englanders will become new little beach bums. And I can't wait. So now that I write it down, there is a yin and yang to life. There are triumphs, and there are setbacks. There are forces in motion that won't be stopped, no matter how much I want them to. The trick is to make these days meaningful, and rich with memories. Enjoy the sweet moments, even though the intersection with bitter is approaching. I try not to dwell on feeling sad, but it's all just a bit surreal. I'm sure the constant reminder isn't healing for my poor rashy face, but I am doing my best to be kind to myself, and the prospect of a late summer filled with my some of my favorite little people is the best kind of medicine. Here's to new adventures in Ventura.