Flare

I wish I could say that the title of this post refers to a positive definition out of Webster’s dictionary such as “a sudden brief burst of bright flame or light,” but I’m sad to say that it doesn’t. In this case, it refers to the flare up I’m experiencing in my autoimmune disease(s).

I had been doing quite a bit better since greatly reducing my gluten intake, but my condition has worsened again. I’m not sure if it’s because of stress or exposure to sunlight or trying to get off Prednisone as my rheumatologist insisted, but I woke up one day with intense joint pain which I haven’t experienced since my days of Lupus. I’m also exhausted and getting chest pains off and on.

I went to see my rheumatologist who said my joints seemed terribly inflamed and that I needed to increase my prednisone and get the inflammation under control before I can even consider getting off prednisone again. *sigh* One step forward, two steps back.

The tests results are back, and the good news is that my muscle enzymes were normal for once. However, my complement level is low, my ANA is positive again, and my C-Reactive Protein is high. Some of my other numbers are off as well, but my doctor didn’t say anything about those. What she did say is that I need to start Cyclosporine. I’m just hoping it’s not like Imuran, Cellcept, or Methotrexate all of which make me run to the bathroom every 15 minutes. Luckily, the school year is almost over, so in six weeks I can get plenty of rest as the Cyclosporine kicks in.

OK, so I’m sorry to be a Debbie Downer. I usually try to be all positive and upbeat in my posts, but I also want to keep it real. So where is the positive? The positive is that I’ve backed off on some responsibilities. For instance, I removed myself from a committee at church. There are a couple of new people on the committee who can pick up where I left off. I’m still serving my church in a couple of other ways that do not involve my going to meetings at night when I should be getting ready for bed.

I’m also asking questions of God when I pray, and even though a certain preacher recently stated that there’s no point in asking why bad things happen and that we just have to accept that life isn’t fair, I think that asking why is an acceptable form of prayer in a close relationship. I don’t think God minds us asking why when we are heavily burdened as long as we continue to honor him as well. Would a parent mind his child asking him a question? God gave us a brain that attempts to rationalize, did he not? Therefore, I’m leaving you with the following video clip of Queen Latifah in Last Holiday because it’s not only a great scene, but I think it captures how I feel right now.

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The Dance

Dementia is an odd disease in that you basically lose your most recent memories first. For instance, yesterday, when my mother asked how old she would be on her next birthday, I said 88, but then she insisted that was impossible because she was only around 80. When she asked what year it was, and I replied 2017, she didn’t believe me and insisted it couldn’t be 2017 already. I remembered reading that you’re not supposed to argue with someone with dementia, so I said, “Oh, wait, I got confused. You’re only going to be 81 on you next birthday. I don’t know who I was thinking about.” She then leaned back in her recliner with a triumphant look of vindication.

This conversation happened exactly one day after I told her she had received a card from her old neighbor, Ms.  Francis, and she couldn’t remember her. Ms. Frances was her neighbor at the retirement resort in Tennessee where she lived for three years prior to moving in with me in December. I let mom know about the card, and she said, “I don’t know that person”. When I reminded her who Ms. Francis was, mom replied, “I didn’t live in an apartment”. I described the apartment building with its goldfish pond in front, the bingo games she loved to play three times a week, the dining room where she ate all her meals, and she had no idea what I was talking about. It’s like she lost all three of those years.

Conversely, she seems to remember everything from her childhood and keeps telling me all sorts of stories about her parents and siblings. On Sunday, for instance, when she supervised my husband and I in the planting of some rose bushes, she told me that her father used to plant roses for her mother. She also likes to tell me about her mother’s cooking and how nice her sister Sadie was when they were growing up. I’m enjoying hearing these stories, but I can’t help but feel sad that she’s losing memories of people she recently knew.

Yesterday, as I was thinking about my mother’s memory loss, I started to worry as I wondered…what if my mother forgets who I am? Right now, she trusts me, perhaps because I’m her daughter and she has fond memories of me going back many years. If she forgets who I am, however, will she become suspicious of me as she does physical therapists and other strangers who enter our home? I then remembered that Jesus said, “…do not worry about tomorrow, for tomorrow will worry about itself”. (Matthew 6:34)

I found peace in this and decided to hand the worry over to God. I’ve just got to take each day as it comes and make the best of it. In fact, when Alif, our seven-year-old neighbor, came over today like he does most days (he’s sort of a Muslim version of Dennis the Menace), he demonstrated the Dab to us which is some sort of crazy new hip hop dance in which you basically act like your sneezing into the crook of your arm. (What in the world will they think of next?) I turned to my mom and asked her what dances were popular in her day. She said, “Oh, well, there was the Lindy and the Big Apple. I asked her about the Charleston because I love the Charleston scene from the movie “It’s a Wonderful Life” (see video at the end of this post), and she replied that it was popular when she was really young. I looked it up on YouTube and my husband, Alif, and I all watched a video of it, imitating the moves as we did so. We danced the Charleston, terribly I might add, as all of us, my mother included, ended up laughing hysterically.  It was great fun, made more wonderful by the knowledge that my mother had a good day. I’m determined to hold onto this memory and other good memories of my mother in the coming days, weeks, and months.

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Wander On, Weary Soul

We have a couple of amazing neighbors named Roberto and Maria. They’ve been married around 50 years, and they’re the type of neighbors that sit out on their front porch and invite you in for tea and cookies or even wine and bbq depending on the time of day. We’ve been truly blessed to have this couple in our lives as they’ve offered us many words of wisdom.

Last week, Roberto gave me a recording of The Bluegrass Gospel Project, and I was struck by a song called “Wander On, Weary Soul” which you can listen to at the end of my post. Even if you’re not a fan of bluegrass, I think you’ll find the lyrics both beautiful and comforting. Basically, it’s about how you just have to keep going no matter how difficult your situation is or how long it may last. There’s a lot of nature imagery used such as being in a snow storm as it’s getting dark while going up a mountain. In the last line of the chorus, the singer points out, “You shall be free as neither does the river know the way down to the sea”.

This song has been a source of comfort to me, especially over the last couple of days. You see, this week is my spring break. It’s normally a time for me to recharge my batteries going into the final quarter of the school year when the kids are at their wildest and there’s so much still left to accomplish. Unfortunately, my mom is exhibiting some of the negative behaviors she displayed 3-5 years ago when she last lived with us. These are the same behaviors I witnessed growing up as well. I’m not going to go into details but I was hoping things would be different this time. It seems that I’m in a snowstorm entering a time of darkness while traversing a mountain. I don’t know how long or crooked the course is that lays before me, but I take comfort knowing that I’m not alone, that others have faced long and difficult journeys, and that there will be an end at some point.

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A Day of Rest

I was raised by an Italian Catholic mother, so guilt has always been something I’ve experienced to a great degree. I was able to decrease the amount of guilt I experienced when I left home and became protestant, but it’s something that I still struggle with from time to time. Guilt can be good in that it’s a signal from our conscience or God that we’re not doing what is good and noble, but it can also crush one’s spirit and make one feel unworthy, and I don’t think God wants that.

I’ve recently started reading a devotional book called Not Alone by Nell Noonan, a woman of great faith and strength who took care of her invalid husband for some years before his passing. I knew her personally because she attended my church, but because I wasn’t a caregiver, I never felt the need to read her book…until now. It has helped me in doing just what the title suggests…feeling “not alone”, and it has given me some strength and helped me forgive myself for the times when I feel inadequate.

Taking care of an 87-year-old can be difficult, and when you’re a caregiver for someone, you will invariably feel some guilt if you become impatient (when having to repeat yourself a lot for instance) or don’t feel you’re doing enough for that person. I’ve noticed that when I’m tired or not feeling well, I tend to be more impatient with my mother, and when I’m under fatigue and duress, that’s also when I tend to eat things that aren’t so good for me. I had a hectic week, and I faltered in my endeavor to stay gluten free, and I ended up in a big flare of my Dermatomyositis Friday and Saturday, necessitating my taking a bunch of Prednisone. Fortunately, it worked its magic so I could take my mother to the emergency room yesterday afternoon. Apparently, she has now developed cellulitis, a bacterial infection on her leg. They released her after giving her an IV antibiotic and a prescription for more of the same in capsule form, but we’ve got to keep close tabs on the situation since she’s elderly and has Diabetes.

After I waited in line at Walgreen’s for twenty minutes this morning, I went home and helped mom with a shower, determined not to feel guilty for missing church.  As mom napped in her recliner, I listened to the rain fall via my Calm app while I typed away on the first half of this blog post, avoiding practicing for a presentation that I’m giving Tuesday afternoon.

After fixing lunch, I decided that I would bake some bread, something I haven’t done in a long time. Because of my gluten sensitivity, I can’t eat it, but I can still enjoy the smell of it baking, and I know my husband and mom will enjoy eating a fresh warm slice with some butter. When I started getting out the flour, yeast, sugar, and butter, my mom wheeled her walker into the kitchen and asked if she could help, and I didn’t hesitate to say yes. There wasn’t much she could do but sit and supervise,which she did,  letting me know that she always used lard instead of butter in her recipe and warning me repeatedly not to let the butter, milk, and sugar  mix get too hot on the stove “because it will kill all the yeast”. Usually, her repeated warnings would frustrate me, but instead I found myself smiling and accepted that this is who she is and who she has always been, a perfectionist when it comes to baking.

She greased a bowl into which I could put the dough to rise. I know she missed doing the mixing and kneading, but she still seemed content with just sitting and talking about how her own mother would let the dough rise all night because she always made a large batch; she would make several loaves each Saturday. She smiled as she told me this, and I felt some of that guilt I’ve been feeling  lately slip away and a peace came over me, a peace that comes from letting go of some obligations and just enjoying the time you have with those you love, doing activities that you enjoy.

God wants us to have a day of rest, a Sabbath, each week, and today, the reason for it really hit home. God modeled having a day for rest in Genesis, not because he needed a day of rest, but because he knew that we would. We’re just better when we’ve had rest…not just physically but mentally and spiritually as well. We cannot really take care of others unless we take time to care for ourselves.

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Photo courtesy of Sean Stratton via Unsplash.com

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Home again

Today I brought my mom home from rehab. The social worker wanted to keep her another week but decided to release her sooner because of her confusion and her penchant for being “feisty”. She now has a doctor’s order for a nurse, nurse’s aide, physical therapist, and occupational therapist. The nurse is supposed to come tomorrow to evaluate her.

We got mom settled in rather quickly this afternoon, and I got to give my first insulin shot. (Yea, me!) Fortunately, she is able to stand and walk again, but she’s not walking very well and gets tired easily. I’m not sure what therapy will accomplish considering that she has congestive heart failure, kidney disease, and emphysema, as well as bad knees, but we’ll see. I wasn’t sure they would get her standing or walking on her own again at all, but they have. In my opinion, health care workers are angels in human form. Some of the things they do border on the miraculous!

So besides looking after my mom and running errands all the time (taking her to doctor’s appointments, running to Walgreen’s to pick up her medicine, helping her change and shower), what am I doing with my free time? Well, besides working 45+ hours a week, and trying not to let everyone down where my volunteer work is concerned, I’ve been asking God, “What is your will for my life and when will things start looking up?”

I guess I’ve sort of been feeling sorry for myself when really I shouldn’t. I took on the responsibility of looking after my mom after her heart attack, and my husband is able to watch her during the day since he’s not working outside of the home…not for money yet anyway. I had felt like I overextended myself, and I was looking for a way to draw back a bit; this has certainly given me reason to do so. We’ve learned to live more frugally, living solely on my public educator paycheck. I’m also not freaking out about some stuff like I used to. I guess having an extremely sick relative can help you put things into perspective. Still, I can’t help but think back to better times when we had more money and time at our disposal. I know this is a learning experience and that it will make me a better person, but I still miss the old times.

We’re told in Proverbs 3:5-6 to “Trust in the Lord with all your heart. And lean not on your own understanding. In all your ways acknowledge Him, and he shall direct your paths.” This is much easier said than done, but I’m going to try to do it anyway. Please pray for me and my family as we go through this difficult season in our lives.

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Hospital (continued)

It’s now two days since my mom came to the hospital. I can’t say admitted because a social worker came by earlier and said she was never admitted but is just under observation. I’m not sure how that’s possible since the emergency room doctor said he was going to admit her, and they’ve been working to re-hydrate her while running a lot of tests, but I will have to talk o the doctor when he comes around.

What we do know at this point is that an increase in Bumex to get the excess fluid off her lungs dehydrated her, but now she’s rehydrated and her kidneys are functioning better. She isn’t hallucinating like she was, but she is still a bit confused, not always knowing where she is or that I’m her daughter. The MRI showed that she has microvascular ischemic changes in her brain and the doctor said he thinks she is developing dementia. After reading up on it last night, it seems like he may be correct.

I’m not sure what will happen next. I only know that I’m tired, and I  can’t bring her home if she still can’t stand or walk. This situation has been a real test of faith, but I am still going to trust that God will help us through it.

 

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Hospital

I had to call for an ambulance this morning. My mother could not move her legs due to intense physical pain. She’s been having problems standing and walking since Wednesday, but it’s gotten much worse, and now she’s hallucinating. I’m not sure if it’s her kidneys or her brain, but it it’s awful to witness. Hopefully, the medical staff can discern the problem. They gave her morphine ten minutes ago and now she’s sleeping.

I’m going to be very honest. I was pretty upset with God Friday night when she was in a lot of pain. She wouldn’t let us call for an ambulance, and I felt completely helpless. I cried a lot and begged God not to let her suffer, but for some reason, he’s decided to let her go through this. It’s so hard not having answers and not knowing what to expect. I still have faith in God, but it’s hard to fathom why he lets his people endure so much.

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