The Nile Ain't Just A River in Egypt

I am sure that you are able to get a feel for who I am by reading my blog posts but I haven’t taken the time to let you know me on a more personal level. Today I decided to do 2 memes because I always find them insightful. But I changed my mind. Instead, here is something I feel compelled to share today.

There are many times when I wish that I'd chosen to write this blog anonymously. If I had done so I would be able to rant and rave about things in my personal life that should not be shared in mixed company or ever shared for that matter. Anonymity would provide the platform to discuss these things without fear or trepidation. In the past when I felt the need for catharsis I wrote in a journal, chronicling the moment for reflection at a later date. Presently I am dealing with such a moment and without pen to pad I chose to share it with you. My only hope is that my family is not reading this because they get very concerned about me. So here it goes.

My mother has been dealing with a lupus, a chronic disease for about 16 years. Lupus is an autoimmune disease most easily described as the body attacking itself. Normally the immune system reacts and attacks a virus or bacteria like when we get a cold, flu or a cut. People with lupus have this happen internally just because.

To put it in context – Seal has lupus, it manifested in skin ulcers. The scars on his face are evidence of a lupus flare(s) and luckily he has been in remission for many years. Aside from skin problems lupus can also effect the joints, pulmonary system, even the brain. Unfortunately, my mother has not been as lucky as Seal. She has had to deal with a little bit of everything. She is in pain more often than not. And when she has a flare all bets are off. She constantly battles with 103 fevers, pain, loss of appetite and it is not a pretty sight.

Three years ago my mother had a major flare. As her only child I took on the role of caregiver and I wouldn’t have it any other way. For thirty days she was hospitalized and each day had a fever so high that we used ice packs to cool her off. During the course of that month we dealt with the inability of the doctors to determine if she was having a lupus flare or something else. One doctor thought it might be tuberculosis so they put her in isolation. She was subjected to taking the TB drugs which have horrendous side effects – and we knew it was the lupus. On a daily basis we joked that we wanted to see Dr House. Only he could solve the mystery and relive my mother’s suffering. But unfortunately there was no brilliant doctor with cane in hand to save the day.

One day I called her room and she was barely coherent. I went to the hospital to discover her trying to get out of the bed –her eyes rolling to the back of her head and the doctors staring with perplexed looks on their faces when they finally arrived. That day my mother lost her ability to walk. She could barely talk and her motor functions were horribly decreased. I had witnessed my mother having a stroke but it took a week for the doctors to finally reach that conclusion. After that things became progressively worse.

She had 3 blood transfusions and was barely making it. The look in her eyes conveyed her weary soul. And I knew her wishes if her heart stopped and as her health proxy I had to stay true to her desire. My aunt called me at the hospital (where I spent most of my nights and days) to ask me about my mother’s Will. Not wanting to upset my mother with tears of anger or fear I immediately ended the call.

Eventually she got a little better and with the help of a physical therapist and a walker she began to walk. After 30 days she had enough and said she wanted to go home. Since the doctors were doing little more than giving her Tylenol to break the fever and TB was ruled out, everyone agreed she could leave. It seems home was the respite she needed. With rest and exercise the flare finally passed.

Flash forward to today. As I write my mother is suffering from something – it could be another flare. She has already been hospitalized for an infection and has progressively lost weight. For her nothing tastes good (thrush can do that) and she has had the inability to keep anything down- including her medication. This has caused her body to go into withdrawal and the cycle starts again. The good news is that her appetite returned yesterday and she will probably begin to gain weight.

She is supposed to visit next week to see the baby but living a plane ride away that is not going to happen. She is too weak to walk let alone travel alone. I know she wants to see her grand baby but we will have to travel to see her. All of this is background for my moment of catharsis.

I am frightened. And I have only two responses to fear: fight or flight. Three years ago I chose to fight. Today I am choosing flight. To understand this you have to know who I am. I am the “emotional” one in my family. As long as I can remember people have hidden things from me because I will drop everything and be by the side of whoever is in duress. Many times becoming an emotional wreck in the process.

Living miles away from my mother at this juncture I maintain my sanity by retreating into my corner of the world. As each day passes I fill it with activity. I write my blog. Do consulting work. Make cakes. Care for my family. Repeat. And in the back of my mind I hear the tiny voice that says, “be prepared.”

Tearfully I admit that I am not prepared, I will never be prepared and I stay distracted to keep my mind from going down that road. I am doing a disservice to my mother but my sanity is contingent upon my denial. This is the space that I am in as I write. I will tuck this away until I am brave enough to face it again head on. Do not be quick to judge. Until you walk a mile in my shoes you will never know how this feels. And trust me. I judge myself the hardest anyway.


Weith Kick said…
Thanks for sharing this Renee. I have a friend who has lupus. She's had it at least since since 2001. Some days are bad but some are good.

I think you sharing this is good, because there may be others out there who are going through the same thing or something similar with someone they love. You sharing this helps people to feel less alone. It helps to know others are going through the same thing.
Lori Skoog said…
Hello Renee....I found your blog through Lynda in East Africa. Your "cakes" are spectacular, and so is your writing.
Regarding your Mom, you have to do what is right for you and your Mom. My Mom was 80 and had been on dialysis for 3 years. She decided it was enough and chose to go off it....I brought her (she lived 2 1/2 hours away) and an aide to our farm and by the next morning she died here. I truly believe she willed it.
She had been living in her own home with 24 hour care and because we have a farm with animals, I could not spend as much time away (at her house) as I could (should) made me feel very guilty, even tho I spoke to her almost everyday.
It is not an easy time for both of you, and unfortunately we all have to go through seems that their is always something on your shoulder, even when you try to distract yourself.
I promise that you will get through this. If you look at my journal, go to the link Bedlam Farm. Jon Katz is an author and works with Hospice patients with his dogs. Look at his Hospice Journal and you will learn so much about people who are clinging to life. It has really been helpful to so many.

Sage and Savvy said…
I agree with the previous comment. By you sharing your story, it's not only cathartic for you, but you may be helping others as well who feel the same way in similar situations. No one is here to judge...
Tiffany said…
Renee this is such a moving post. Your honesty is amazing. I think there are many people who feel the same way, and your post is speaking for many of them.

I am so sorry that you are dealing with this right now. Being the only can be tough. My son is in that position, and it worries me for later on.

I am sending you lots of hugs!!!
Dawn said…
Everyone handles things in their own way and I think you have to do what is right for you and your family. Nobody should judge you for that, but of course, people will. I am sorry that your mother is suffering with such a chronic, painful disease. I do think you have to be prepared for the different events that could take place with her, but it sounds like you are working on that. My mom has been diagnosed with a brain aneurysm and while she isn't dealing with the pain that your mom is, it is still terrifying to know what the future may hold, but I know I have to be strong and face it. Until then, enjoy them in the way we can. I will keep your family in my prayers. Thanks for sharing.
Anonymous said…
Thanks for sharing that and here's a big hug {hug}.
I went through the similar with my mother who begged to not be put in a nursing home. We managed to keep her at home with 24/7 care and I was one of her "caretakers", at the same time raising my then 1 yr old. Like you, I wouldn't take it back for anything. Yet at times, I was so distraught, exhausted and depressed that I didn't know if I could care for myself, much less anyone else.
At the end, when she had to be hospitalized, everyone around me conceded that her time had come. Not me. I busied myself with denial by cleaning her home and scheduling her care and so forth. My denial was the only thing that kept me sane and strong enough to care for child.
When she did pass away, I was with her in that room and I was completely shocked. I denied up until the point I could deny no longer. But my mom?
My mother knew me, of course. My mother would have wanted me to do what I needed to do to care for my child, to continue to live.
I don't know, of course but I believe that your mom would want the same. I can hear her voice gently saying "you do what you need to do sweetheart. You take care of my grandson , your husband and yourself. I'll be okay".
And she will be. And you will be. I promise.
Brittany said…
Beautifully written. I don't think anyone is prepared, but we do what is necessary. I will keep her in my thoughts.
Amazing_Grace said…
So sorry for all your problems. I hope and pray that your mother feels better soon. ((hugs))
Carrie said…
Thanks for being so honest. I can't fully understand what you are going through. I can acknowledge your courage in your words and see the strength and the love you have for your mother. I do know that tough decisions make us stronger and my prayer is that you gain strength and wisdom as you make each decision regarding your mother.
VCSMama said…

You know this already, I think, but as the oldest of three daughters, I, too felt the responsibility of caring for my mother who was terminally ill...and for part of the time living in another state. Even when other family members and friends were the front line, I was still the one "in charge" and carrying the weight of holding things and people together. I haven't been in your exact shoes, but I've experienced the excruciating pain of wanting to be a good daughter and still stay sane under trying circumstances. What I really want to say is that sometimes the only way to make peace with the fact that all you can do is what you *can* do in each moment is to remember that this is between you, your mother and God. No one on this planet, or any other, knows what that's really about, and their judgement just doesn't count. What you're feeling is so normal and understandable. It's just not easy, and there is no way to get through it but to just do what can do and remember to forgive yourself, because these feeling you *think* you shouldn't have will come up over and over again. One last thing, remember, our mothers were daughters, too. My mother cared for her mother and my father's mother. I know that she understood and forgave me when I didn't feel strong enough to deal. Anyway, I'm babbling, but it's out of love.
Dori said…
Here's a big (((hug))) for you. You and your family are in my thoughts and prayers.
Anonymous said…
Please don't judge yourself.... we all do what we can. I know it sounds trite but God will give you all that you need and He will take care of everything that needs taking care of.....

Hugs and warm thoughts across the blogsphere.

Thanks for sharing. Your honesty will be a huge help to many people.
angie said…
Oh my goodness.......I have tears in my eyes. One of my best friends had a mother who battled MS for years. For the last 5 or so years her mom couldn't even talk.....and she lived across the country. I could see how hard it was on my friend........what you said reminds me so much of how she felt, too. How could anyone "judge" your feelings? Thanks for sharing. I'm so sorry your mom has suffered so greatly.......and you too.
jenni said…
I know all to well what you are going through. If you ever need to rant I'm here. I don't judge. I understand pain is pain. We do and say things that aren't rational. Nor should we. It's difficult to watch someone we love suffer without any way to stop it. There shouldn't be rules on how we react to it. It's nature.

If you need an ear to bend let me know. I will pray for your mom.
Christy said…
First of all, let me say how sorry I am that your mother isn't doing well. I don't really know much about Lupus, but I know that my mother was recently diagnosed w/Parkinson's Disease, and I know what it's like to be fearful of what is to come.

Everyone deals with things on their own timetable and in their own way, and no one should feel that they have the right to judge or tell you how you "should" handle it. Feelings are funny and precarious things. When you are ready, you will find the strength to do what feels right.

I can relate to what you've written. Several years ago, my dad had a brain tumor. I lived far enough away to remove myself from the day to day of what that meant; and to be honest, I didn't have any knowledge of how serious his condition was. All I know is that I kept myself at arm's length b/c I was afraid that I couldn't handle what was really going on. There were other factors too, but it was mostly fear at work.
I ended up moving back to the area where my family lived and was able to spend more time w/him before he died, but I still haven't been to his grave (since the funeral.) I just can't do it. Some people judge me for it, some people say it's not right, but I really don't care. I know I loved him and I don't need to visit his grave on a set schedule to let other people know that.
Do what you need to do. You obviously love your mom, and you don't have to follow someone else prescribed set of rules to prove that. My best to you Renee--hugs.
Petula said…
That is so much to keep locked up within and I can really feel for what you're going through. And can only imagine what your mom is dealing with. It is so natural to judge yourself, but try to go a little easy on you.

I would encourage you to seek out some counsel whether it's a minister or therapist so that you can deal with this again head on and not tuck it away. Someone (besides your family) that is in your corner and that will help you through the emotional turmoil of this while you're dealing with it. You're right, your "sanity" is being held together by your activity (and writing to share with us may have helped), but I think it would best serve you and your mom if you're facing it head on as soon as possible.

I had a similar experience with my grandmother. I was living here in GA and she was in DE, and I was in charge of her care. When doctors and her church family started calling me to make decisions for her it was the hardest thing to deal with. I had to decide to have her leg amputated and I had to decide to let her go after they said she wouldn't come out of a coma. I wanted to wait, hide, put it off... just let me get there, I thought, but I had been there and things had took a turn for the worse. I say this to say although your pain is different a lot of us can understand the process. Understand the difficulty. Thank you for sharing with us and I hope you and the baby get to see your mom soon.

Take care... email me anytime.
Anonymous said…
Please be kind to yourself. You can't be a good caregiver unless you take care of yourself first and no I would never judge you. What you're going through must be so difficult I just can't imagine it. I'm very sorry.
Maternal Mirth said…
Oh, Cutie Bootie, I am sending lots and lots of hugs and a few prayers your way.
T.Allen-Mercado said…
Renee, your courage and honesty are admirable. Few understand the wealth of self knowledge and bravery entailed in the admission that you may not have all the right answers. Not knowing what to do, being unprepared, and yet facing each day-willingly or not to take some small step is to be revered and respected. I wish you strength and grace to take small steps wherever they may lead.
Tricia said…
Hi Renee,
Thank you. Thank you for taking the time to share so much of yourself with us. I am very sorry that you and your mother are going through what is obviously a difficult time. I applaud your courage to reveal this part of you. Your family is definitely in my thoughts and prayers. I sincerely hope your moms get better soon.
Zee Harrison said…
Thank you for being so open and honest. I can only echo the many thoughtful sentiments here.
No matter what happens though, Renee you will get through it all.
I don't pray but I will be thinking about you and hoping that your focus is on keeping you well through all this. Taking time out to have a massage or lunch with a friend who always makes you laugh - you know what you like.
Stay well and it's okay to have moments in the valley.

My sister fought lupus for many years. She had to go on dialysis and eventually got a kidney transplant. She once had a beautiful singing voice, but lupus attacked her vocal chords. The good news she has been in remission in for many years. There is hope for your mother. Don't give up. Stay in prayer and keep the faith.

LadyJava said…
I don't think we can ever be truly "prepared". It's just too hard..

Be strong Renee and be God be with you and your family :)
Zen Ventures said…
I am an emtotional wreck myself today, we're undergoing some crisis in the family too and reading your blog made me realize that we all go through certain degree of suffering brought to us in different ways. What I can say is, you can run but you can never ever hide! One day, you have to face the world no matter what and when you do, it don't matter if you're prepared for it. You just stand your ground and hold your head up high. You're not alone Renee'.
JenniBeanV said…
Oh Renee...I am very sorry to hear your mother is unwell. I am sure she wants you to be doing what is best for you and your family right now. Hang in there!
Kelly said…
i don't have anything motivational or inspirational to say. i just want to say that you have a lot of wonderful, caring, thoughtful women praying for you and your mother. please keep us posted.
Petra said…
Absolutely nobody knows exactly what you are going through but you and we are not here to judge you. You need to do what you need to do, but even though right now that is to retreat, that doesn't mean that you won't change your mind and come around to face it soon. Give yourself some time and listen to your heart and you will do the right thing.

I am so sorry you are suffering right now. You and your family are in my thoughts and prayers.
When you choose the write this blog with a name and a face, you chose to allow people to learn who you are, what you care about, and in return have allowed us to care about you. Anonymously you could rant and rave about the trivial things, but with a name, we can think about you, encourage you, and hope that you will find your way through this road block.

Three years ago your life and circumstances were different. Now, I'm sure your mother realizes that not only do you care and love her, but you care and love your husband and child. She knows you and I'm sure only wants what is best for you. By her allowing you to make this decision, she has thought about what is best for herself and for you.

You will know when it is the best time to be with her. My thoughts are with you, even though I only know you through words.
Rachel said…
Renee -- my mother was recently diagnosed with lupus. Like you, I live several hundred miles away from her and the rest of my family (who are all drama lovers). While most of the time I wish I was there to help her and to shield her from the drama of my family, I COMPLETELY understand what you said with regard to the distance. Sometimes, for those that are/have been caretakers, etc., distance (whether physical or emotional) gives the space to reflect, understand, and/or accept what is happening. It sounds like you are trying to do all of that. Don't apologize for that. It's fine -- you've been through a lot with your mother and you have a lot going on right now. Whatever it is that you need to do . . .well, that's what you need to do.

I'll be praying for you and your mom.
Babette said…
Renee, I cannot say that I know how you feel because I don't. All I have to offer is my prayer and good thoughts. Stay strong.
I'd be so far down The Nile River you don't even know! I lost my Dad early on and I cling to my Mom now. I can't even imagine what you must go through watching her so ill. My prayers are with you too!!
I'm so sorry that you have to deal with this.
I'm not really good at this kind of thing but I just wanted to let you know that I'm thinking about you.
Ms. Bar B: said…
I am glad that you felt comfortable enough to open up in such a public space. Believe it or not, this is a place of love... kind of like a therapy session seeing as how you can express yourself completely and know that there will always be someone who is both listening and able to give advice, encouragement or to just cry with it need be. It is also helpful by letting you know that you are not in this alone.

I can relate to what you are going through. My mother was a diabetic and had difficulty for many years. She had a stroke and passed away 16 years ago when I was 8 years old. I was in your shoes in 2005 when my great-grandmother (who raised me) was losing her battle with lung cancer. I am the same, an emotional wreck in these situations. But that is normal and I want you to know that.

I don't want to add to what you are feeling right now, I just want you to know that you are not alone and you will get through this. I will keep, you and your mom in my prayers.
I am so sorry for you and your mom. I understand on a certain level how you feel. My brother has diabetes and has had it since he was eight or so. Over the years it has gotten worse and worse and sometimes he will be in diabetic comas, etc. I do the same thing and often feel terribly guilty. I live in fear each day that he will have a diabetic incident and die. I really can see where you are coming from. I don't even know how to handle it but I think we each do our best. You are very loving and a great daughter that is clear.
Wendy said…
Oh, hon - I'm so sorry. You are doing the best you can, and the best thing possible. You can't help your mom if you aren't strong, so you have to find that however you can.

It is so unfair that some traipse through life with nary a care, and others suffer so much.

I will pray that this is temporary and she will be rebound.
fly tie said…
*super tight ((((hug))))*

wishing you greatness.
Sydney said…
I'm sorry you're having to deal with this yourself. It must be hard having no siblings to lean on. Hang in there. You're in my thoughts.
anymommy said…
I would crawl under my bed shaking and crying if I had to deal with my mother being ill. You are a strong woman. Thanks for sharing this part of your story.

My first visit today (from allmediocre) and I feel like I saw into your soul a little. Blogging is like that sometimes. I love the great unifier idea!
Anonymous said…
Oh Renee ...

I'm so glad you opened up and let it out. I know how it is, feeling like you can't offer full disclosure for fear of your family reading. My stepfather (and my daughter's father figure) is very ill -- As much as I'd like to, I don't write about it because he reads the blog every day.

Everyone deals with stuff their own way. You obviously care so much for everyone in your life -- don't be hard on yourself for stepping back and taking care of yourself.

You and your mom are in my thoughts.

San Diego Momma said…
I don't think you'll find any judgment here. There's no doubt in my mind that you are a loving daughter. We all deal with grief and sickness in our own way. Maybe this is the time for you to marshal your resources and prepare emotionally for whatever may come. Either way, you're doing what you have to do. You're human. And your mom knows you love her.
Luxe Tips said…

I am so sorry you are going through this. I am also the emotional one in my family and believe me I understand what you are going through more than you. I will pray for you and your mom.
Joanie said…
I'm saying a prayer for your mom and for you. I know this is a huge weight on your heart. I wish there were something more I could say, some great nursey knowledge to impart. But there's not. Just one daughter to another sharing the pain and the fear.

Thank you so much for sharing.

Da Goddess

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