Feeling a Touch Frustrated… and Lonely

I had all my plans lined up. Even my mom flew down from Oregon, planning on a 3-week stay while I had wrist/hand surgery (due to rheumatoid arthritis and a soon-to-be tendon rupture.) Mom arrived and we had a few days to celebrate my 40th birthday and work on shipping Rest Ministries inventory out to our new shipper, and then I would become “the patient.”

But I woke up 4 days before surgery with a bad case of cellulites on my ankle, where I had experienced edema a couple weeks before. That morning, a Sunday, I called my rheumatologist, and she sent me to ER. Monday the surgeon said “nada” to surgery; my ankle looked very red.

Tuesday I was glad surgery had been cancelled. My ankle was growing bigger. My foot looked like a foot of the cartoon character Shrek, a ball with swollen toes sticking out the end. I saw the rheumatologist, who said it had abscessed. By Friday I was back to ER and am now going to the wound care center and having an MRI on Monday (10/27), all because of an inconvenient infection.

So, all this is cause for frustration, right? But more than the infection, painful trips to ER alone. (Hubby had to work, mom had to pick up my son. It’s not as if anyone bailed on me, but still.), Limping around, hours sitting around with my leg propped up, not knowing if my wrist's tendon was going to hold. Gasping in pain every time I pick up a cup of coffee or try to start the car... Or just move! It's all getting a bit old.
 
Mom left early knowing she’d be back soon, when surgery was scheduled, maybe in a few weeks even? No. Today is 4 weeks exactly since surgery was scheduled.

I wasn’t ready for her to leave but knew it was for the best. My husband thought he could get the whole next week off work and pick Josh up from school, take him to swim lessons, etc. but at the last minute he had to work. So I was back to full time mom-duty.

My mom said, “Call the church and see if someone can help.” She is an elder at her church. She provides meals, support, drives people to the doctor’s office, whatever they need. “My church doesn’t have elders, mom.”

“Well, call and just tell them what you need.”

Sounds like advice I typically give all of you! But I didn’t call them.

Why? You know the answer, huh?

The last time I spoke to the church’s secretary I had to give her all the information about the HopeKeepers group because she argued that they didn’t have any such group for the chronically ill. I gave her the leader’s name, address, phone and a 30-second infomercial for the group.

“What about the women’s ministry?” my mom suggested.

That’s who I would suggest someone call too. I mean, don’t women love to help people out?

But I didn’t call. Last year I spent nearly two hours with the leaders trying to explain how chronically ill people need help sometimes regardless of how well they may appear. They just didn’t “get it.” They couldn’t see whey people with illness couldn’t just deal with it. They couldn’t get over how healthy a person could look.
 
After all, the women in their ministry are busy! They have a lot going on in their own families, They aren’t available for “hand outs” to people who are just a little bit tired.

Yet I knew, if I called and said I was having chemo, they would kick into high gear with help. But a staph infection? What’s the big deal? So I’m a little tired, right?

It would take three calls to explain everything; a few people would call if I was lucky, one may show up… and then I would look perfectly healthy. Should the house be messy or clean? Should I be dressed or in pjs? And really, how hard is it to pick up your kid at school? (Hard when it's a walk to the parking lot and 95 degrees outside, but still, the odds of me passing out were... well, pretty slim.)
 
And with kids and car seats, even if I trusted a total stranger to drive my child around, I can’t install the car seat.

The truth of it all...

It would take a lot of effort to line up help and I just didn’t have the energy to go through all of that. I couldn’t deal with the emotions right now of being hopeful help was coming and then having the person cancel or just not show up at all. I couldn't deal with long conversations explaining why I was even asking for help.

A few people knew I was having surgery, but only one neighbor offered a meal. That was cancelled. I didn’t have surgery and my mom was here after all.
 
I held out for two weeks without a single tear falling, keeping a happy face so Josh wouldn’t be scared, trying to not worry my husband. One day when my husband was (what I felt) brushing all my fears off, I had to throw something. (Quite unusual for me. I save it up for times like this.)

We were in the garage, and when my tote bags didn’t make a big enough clang, I threw a couple tubs of low-sugar frosting fro the pantry shelf. Josh came around the corner and said, “Mommy, you are losing your temper. You need to take a rest!” and scolded me with his finger.
 
Yeah, go take a rest.

Just what I wanted to do. But what I kept needing to do.

I touched base with my best friend when I was supposed to have surgery. She felt bad because she had the dates wrong, and offered her sympathies for what I was going through. But then I didn’t hear from her for over two weeks. She had a lot going on with her own family, but I so longed for her to just come by with Starbucks and sit on the patio for twenty minutes.

I finally called her after my mom left and bawled on the phone in front of all the other moms at swimming lessons. I explained it had been the worst two weeks I could remember. She invited me to a women’s ministry event the next week, picked me up and drove me there, despite more tears on the phone moments earlier.

Two weeks have passed again and I should call but I’m not a fun person to be around right now. I don't even know what I want, so how can I expect other people to know? When I am hurting I just shut down. People don't want to be around illness or talk about MRIs or the size of a gooey wound.

Two weeks ago my husband took my son to church and saw my other two best girlfriends. He said, “Lisa isn’t doing well. Call her.” (He told me in so many words that he told them I “really needed them.” –pretty rare for either of us to actually admit!)

No one called.

I had hoped maybe Josh could have a play date or something too. I’ve just been surviving the afternoons with lack of energy.

Basically, I’ve never really been “down” for so long. And I’ve never fought infection like this, not knowing if I could lose a foot! The doctor said last week--very casually--"and then the surgeon goes in and takes a piece of bone out to check for infection." Uh... excuse me? I tried to explain my bones were already a disaster and that could set off more deterioration, all in the name of being pro-active.

I usually know that tomorrow has the possibility of physically being a better day. But now that I’ve been off Humera since late August, realistically I know it’s going to keep getting worse before it gets better. Each morning it’s harder to get out of bed. Each night, it’s harder to sleep. Because of the wound, I can’t sleep on my right side, which throws my whole body off from the fibromyalgia flaring on a shoulder that has chunks of bone missing.

And my hand hurts more every day. And I don’t know when I can have surgery now…

My whole family has their life on hold too.

So my point in my sob story? I don’t know if I have one. But here is what I do know for sure:

• God is in control, regardless of how it feels and I have much to be grateful for. Especially that I didn’t have surgery while I had an infection.

• That I am human and despite the steel-magnolia attitude, it’s a façade. I still need people. I still need someone to say, “I’m here for you.”

• It’s hard to ask for help. I always knew this, but I learned it in new ways, because of my resistance to call my own church.

• Just because your church is big, doesn’t mean it’s easy to find help. Sometimes smaller churches are much more effective at knowing what is going on with members. With over 7000 members you would think I could find someone there who could offer some assistance; only I was on their committee a few years ago to set up such a ministry and it never happened because they were too worried about lawsuits.
  

• People give you a certain amount of time to “get better” and then you are expected to just “be better” regardless of the reality. I think most of us get 2 weeks tops. Then you are expected to move on and get back to life.
  

• People try to be encouraging, but it doesn’t always come out right. I had a few say, “Your foot looks a lot better than I expected.” But that was 2-4 weeks after the infection was an inch wide. Maybe I should have taken photos?
  

• Despite writing the book, “Why Can’t I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why” I’m a long way from figuring this all out myself and need to go and read my own book again. Lately I've been reading a few books by John Piper.
  

I am blessed to have you! I hope my own transparencies will encourage you that I don’t have all the answers, I don't have people lining up at my door to offer help either, and that together we can encourage others as well as make changes so people do have help when it's needed. Together maybe we can figure it out.

Comments

[Roma Campbell]

My Dear Lisa,
I have not been active in Rest Ministries until I recently got my computer fixed. I'm so sorry to learn that you are having so much physical trauma in your life.

I really appreciated your sincerity in sharing with us about all that has been happening to you. I know what it's like to need help and not be able to ask for help. I also know what it's like to ask for help and not get any help.

I am willing to try and learn ways to do something about these type of situations.
I know that many others really don't believe me when I tell them that I have all of the disabilities that I do have. That is why Rest Ministries is so special because in your groups, we can find what we
so desperately need.....love, acceptance, understanding and prayers.

I hope you will be feeling much better soon. You will be in my prayers. I do so much appreciate all that you do to share God's love.

In His Love,
Roma

[Lorrain]

Hi Lisa,
I, too struggle with Rheumatoid arthritis, lupus and membership in a 7000 member church.

It is very difficult, ten years into this journey, to ask for help. I find many strangers will meet me at my point of need as I hobble along from place to place. But it's frustrating to be in the place of constant need.

I'm 45 years old and married with an adult son. Facing hip replacements, elbow replacements and heaven knows what else before the insurance and/or the 23 year marriage runs out...

Its been refreshing and validating to read your story. It makes me feel that I am not alone in this world of meds, treatments, visits, xrays, forms; way outside the fast paced multitasking superpeople place I lived in until the late 90's...

[Jenni Saake - InfertilityMom]

Precious Lisa, thank you for being transparent. {{{hugs}}} I'm so sorry you are hurting (in every aspect) and I feel validated to know I'm not the only one who get scholded by a 5-year-old for loosing my temper or set to rest by my son! ;)
You have been on my heart and in my prayers, but I too have been guilty of not acting on those promtings to do something tangible to let you know that, not even an email. :( So please forgive me for not listening to the promtings of the Holy Spirit and reaching out to you when He put you on my heart. Know you are loved. {{{hugs}}}

[Doris]

I'm sending gentle hugs, Lisa. I can relate so closely to what you are going through. I just wanted to say that when you don't ask for help, you are denying the chance for others to use their gift of serving others which is pleasing to the Lord. I know it's hard to get rejection after rejection, and worse yet for people to not even show up, but there are some people out there who truly want, and try, to be God's faithful servants. I absolutely love Josh's costume! That's incredible that your husband made it. Now please think about asking for some help and then JUST REST. So many people love you! Doris

[The Rev. Daniel Beegan]

Dear Lisa,

No, it's not easy and people rarely seem to know how sick we really are. I just found out I have pulmonary hypertension and congestive heart failure, but I have gotten no sympathy except from my doctors. On top of that, pneumonia hit, but it was bacterial and antibiotics knocked it out.

Lisa, you are in my prayers. Concentrate on getting well.

Remember God loves you and many of us are grateful for Rest Ministries.

Father Daniel

[Jonnie Wright]

Lisa, My heart hurts for you. I am so guilty of all those "friendly forgettings!" Where am I when a friend has an endoscopy, another has migraines + 2 kids, a third can't cook because her stove is broken? I think I fail my friends... but then I remember they choose to be my friends in spite of my own self-absorption.

Your tranparency makes me realize that I need to be there for my friends just as they are available for me. I need to be reminded of this a lot!

[Maureen]

Lisa,

Thank you for your honesty. I know I feel this way so often, and sometimes when I read others blogs and it looks like they have super supportive spouses, families, churches, etc. . . I feel like something must be wrong with me. I am sorry that you are going through this, but it helps to know that even you have trouble getting the support the need, despite your knowledge, advocacy and all you have done to help others. I realize that doesn't feel good to you, but I think it brings up a greater truth that you alluded to. Those of us with chronic illness are given some sort of unknown, magical timetable by others to "get well" and when we don't meet it, many times we are ignored. I don't believe it is meant to be unkind, maybe it is fear on the part of others--this could happen to them, this could last this long, I don't have the answers either.

Please know you ARE being lifted up in prayer, by myself and so many others, and as you said, God is in control. But that doesn't mean you can't feel let down, lonely and frustrated. Thank you for having the courage to share your true feelings, I think it is healing for you as well as for those of us reading this post.

I pray that you will recover completely from the staph infection and that your surgery will move ahead and be successful as well. In the meantime, I send you gently cyber hugs and prayers. My offer of long distance help with the business side of things still stands. I know it doesn't address the immediate needs you have, but I know God will find a way to help you through this.

Under His mercy,
Maureen
http://beingchronicallyillisapill.blogspot.com

[Lorie]

Hi Lisa,
I know the Lord lead me here today, I have a sister who is going through the same Chronic illness as you are and with the RA and staph infections. Se has been going through so much and still has to work 8 hrs a day just for medical insurance. I also have a serious Chronic liver illness and I sometimes feel people don't understand that just because we look well on the outside doesn't mean we are well on the inside. I too have to go to work because of medical insurance. My sister and I encourage each other, pray for each other and I can relate to the church being one place you would think you could count on someone, but that is not always so. I pray my sister that you will be encouraged and uplifted in your spirit as the Lord comforts you and holds you ever so closely, never leaving you nor forsaking you. I too will keep you lifted in prayer. I have a site where I write poems and devotions please come and visit when you can and I will do the same.

Blessings Lorie

[Sherrie Tate]

Dear Lisa,
Thank you! Yes, I know it sounds crazy to have someone thanking you for your "sob" story, but I needed to hear it. I've been going through a similar experience for the last 8-9 weeks. Hearing that someone else has been experiencing something similar reminded me that although it may seem like it, I am not the only one dealing with chronic illnesses. It also helped to remind me that the One I need to turn to is always there. People are human and will let us down, our illnesses often make them uncomfortable and unsure so it's easier for them to tell us how "good" we look. And that's the last thing we need to hear when we need their help and don't know how to ask for it.
Thank you Lisa, for being willing to share with us, for Rest Ministries, Hope Keepers and the many ways you encourage us to encourage each other. You are a blessing to me and you are in my prayers.
With love in Him, Sherrie Tate

[How to Cope with Pain]

Yes, even helpers need reminders now and then :) Thanks for sharing your story and your humility.