Accepting The Change-Guest Post By Rick Death (My Husband)

Anger. Frustration. Jealousy. Resentment. Fulfillment. Love. Exhaustion. Compassion.

These are just a few of the range of emotions I feel taking care of a wife with chronic illness.

I am not the type of man who cries over.....well, anything. Truthfully, there have only been a handful of times I have actually had real concerns over the outcome of tests or treatments my wife has endured while battling fibromyalgia, diabetes, and chronic pelvic pain.

Recently, I have experienced all of these emotions on almost a daily basis.

I am angry and frustrated that I cannot "fix" her (like us men like to do).

I am jealous and resentful of her illness because it takes her away from me and our family.

I love her deeply and would go to the ends of the earth for her, but in the spirit of transparency, I am worn out from the the toll that caring for a loved one with any illness, especially chronic illness, takes on the caregiver.

Over the past few month, our schedules have been dominated by doctor's visits, trips to the ER, and trips to the pharmacy. On top of that, taking care of dinner and the kids when I get home from my regular job because my wife is just too exhausted to handle any more.

If this sounds like complaining....it is. I would much rather be taking my wife on dates, or a a nice evening walk. Instead, she often goes to bed between 6:30 and 8:00 pm. She has a hard time staying out more than an hour or two at a time (on a good day) and if we do get out of the house, she is wrecked for the rest of the day. Bottom line-I miss my wife 

While this change in our relationship has been difficult for me to accept, there are blessings in this change. I get to see my wife at her most vulnerable and I know that, because of this, she trusts me implicitly with her heart.  She expresses her gratitude to me multiple times each day.  She has helped me understand that God did not give her this illness-it is not a punishment, but He can bring great good from it.

So here is what I have learned through this journey of chronic illness:

1. Love the sufferer and accept their limitations.
2. Be honest (to the extent that you are comfortable) with friends and family about their condition.
3. Have a supportive community. If your current community is not supportive-find a new one.
4. Pray. Ask others to pray. Pray ceaselessly.
5. Have an accountability partner(s)-someone to remind you that, while being a caregiver is tough, you are not actually the one suffering from the illness
6. Enjoy the good days. Take advantage of them. Have adventures.
7. Have compassion. Compassion is what the chronically ill need the most.

To my wife-
When we said "in sickness and in health" I made a covenant not just with you, but with God. You may be busted, but I love you more each day.

-Rick

Our Broken Healthcare System

As we have traveled this journey of chronic pain and specifically the past few months of trying to determine what has been causing my intractable pelvic pain, I have discovered that our healthcare system is broken.

I know this comes as a great surprise to many of you so I will give you a moment to let this sink in.

For most of us, when we are sick or injured, we go to the hospital, get a diagnosis, get some treatment and move on with life. However, when you have an illness that is not easily diagnosed, especially a chronic illness, things are very different.

Doctors do not like to tell a patient that they don't know what is wrong with them. They also don't like problems that do not show up on tests or scans. At best, if your problem is not showing up on the battery of tests you are subjected to, the doctor will tell you that you should follow up with a specialist. At worst (and sadly more commonly) you will be told that there is nothing wrong with you and it is all in your head.

I have been surprised outraged by the number of my friends who have had similar experiences to mine when experiencing pelvic pain. Some of them went months and even years before they obtained a viable diagnosis and treatment plan.

I have had GYNs tell me that my pelvic pain was related to my fibromyalgia and should be treated by my pain management doctor and my pain management doctor was telling me that they could not do anything and I needed to be treated by a GYN.

I have had a GYN tell me that he was certain my pain was caused by scar tissue from previous surgeries and that he would review my records and have his surgical scheduler call me to get me scheduled for a hysterectomy only to call me a week later and tell me there was no pathological evidence of a physical problem and I was basically drug seeking. (Pain management is a whole other problem with our healthcare system-but that is for another post).

So here is what I have learned through this journey:

1. You know your body best, if you feel like something is wrong-get it checked out.
2. Doctors are very smart, but they don't know everything. If you feel like you are not being heard or there is something missing from your diagnosis-get a second opinion, or a third, or as many as you need (it took me 4 doctors to get to a diagnosis for my pelvic pain).
3. You have a right to your medical records. You should also keep your own records of doctors you have seen and what the outcome was.
4. Be honest about your symptoms. Don't be a hero-if it hurts, tell them.
5. Your relationship with your healthcare providers is just that, a relationship. If you are not comfortable with the relationship, get out. Find a doctor you can trust and feel comfortable talking to.
6. You are your own best advocate-speak up!

Blessings,
Meri

Walk By Faith

Just a quick update.

My GYN oncologist has reviewed the letter from my primary care physician that states I am safe to go under anesthesia. So we now have a date and time for my biopsy.

I would like to request prayer from those of you who feel led. The procedure is scheduled for 7:30 am on Thursday 2/4/16 (that's next Thursday).

I am anxious for so many reasons, not the least of which being my previous experience with the failed attempt earlier this month.

Unfortunately this procedure will not improve the pain issues I continue to have, but it will hopefully provide some answers. We know those answers may not be what we want them to be, but we are trusting in God's timing and His plan.

But You Don't Look Sick

So here's the problem with invisible illness: you don't look sick.

Now, I am not entirely sure HOW sick you are supposed to look to "prove" you are chronically ill, but I do know that I have not met the criteria.

When a friend or family member breaks a leg, has major surgery, goes through cancer treatment, etc., many people reach out offering help to the patient and the family. People understand that when going through a medical crisis, everyday tasks can take on a whole new level of challenge. So friends and family members offer help with meals, housework, childcare, or just showing up and spending time with the family.

When you suffer from chronic invisible illness, these needs are often overlooked.

So here is my question-how do you ask for help without sounding selfish?

My kids are a great help around the house and my husband does the best he can after working all day, but my house has not been truly cleaned in several weeks.

We have had very few home-cooked meals in the past few weeks because I do not have the energy to cook so when we do manage to eat at home, it is whatever my husband manages to put together after working all day (which is usually delicious, but results in a late dinner hour and too much pressure on him).

I don't want to complain. I am not trying to have a pity party. I just want to shed light on an often overlooked group of people. Those of us with invisible illnesses that significantly impact our daily lives, but we don't "look sick". We don't share about our hardships because we want to be strong and independent. We don't know how to ask for help.

Blessings,
Meri

Waiting

I have found that when you have a chronic illness or any illness that is not common or easily diagnosed, you spend a lot of time waiting.

Waiting in doctor's offices to see the physician.

Waiting for lab and test results.

Waiting for procedures to be scheduled.

Waiting for medication and treatment.

Today is a tough day. My pain is not well controlled and I am extremely fatigued. I have lots to do and neither the energy nor the physical ability to get it all done.

And I am waiting....waiting to find out when they will finally reschedule my biopsy so that I can then wait for answers from the pathologist.

All of this reminds me of the song "While I'm Waiting" by John Waller

I'm waiting, I'm waiting on You Lord
And I am hopeful, I'm waiting on You Lord
Though it is painful, but patiently I will wait

And I will move ahead bold and confident
Taking every step in obedience

While I'm waiting I will serve You
While I'm waiting I will worship
While I'm waiting I will not faint
I'll be running the race even while I wait

Read more: John Waller - While I'm Waiting Lyrics | MetroLyrics

 

So, while I wait for test results, procedures to be scheduled, doctor's office visits, etc. I will worship my Savior. I will serve Him and run the race as best I can while I wait.

 

Blessings,
Meri 

Moving Forward

So-great news today from my primary care physician. My blood sugars (I am Type II Diabetic) are much better controlled on the new medications we added 2 weeks ago. He has released me to be able to have the biopsy to determine what the "spot" in my uterus is.

We personally delivered the letter to my oncologist's office today as well as having it faxed---not taking any chances of it getting "misplaced"!

What this means from here....we can move forward with the biopsy and know exactly what we are dealing with.

Dealing with the known is always easier than dealing with the unknown.

However, this is a poignant reminder that nothing in my future is unknown to my Heavenly Father. My future is a memory for Him and my life is completely in His hands.

I am still very fatigued most of the time and struggling to control the pain caused by the scar tissue and whatever else is going on in my pelvis. I know that this procedure is not going to cure these issues. But I also know that we are on the right track and moving forward.

Blessings,
Meri

Grateful

I am not sure where to begin.

The purpose of this blog is twofold:
1) To bring awareness to chronic, invisible illness
2) To keep friends and family updated on what is happening with my specific illnesses

Rather than tell the entire (and very and long and complicated) story of the evolution of my illness, I will reveal it in pieces related to what is currently happening in my journey.

The first thing I want to address is gratitude. 

I am not angry (although I have been at times).  I don't believe I am being punished by God-in fact I don't believe this is of God at all. But I believe that God will turn this struggle into good and work it to further His kingdom-and I am honored to be a part of that.  In this sense, I am grateful.

I will give a brief background so that my story make sense to anyone reading this who does not know me personally:

I suffer from fibromyalgia. I was diagnosed in 2012. Fibromyalgia is simply the clinical term for widespread, continuous pain. The medical community has yet to discover a cause or a cure for this condition. While the pain is not always excruciating, it is always present and is, therefore, exhausting. Fibromyalgia causes a list of symptoms so long it could take up several pages of a book. Personally, I experience nerve pain in my hands and feet, extreme fatigue, generalized aching, back pain, pain in my lower extremities, weakness in my hands, depression and anxiety.

On top of my fibromyalgia, last summer I started having severe pelvic pain. 4 ER visits, 4 GYNs, 2 CT scans, 4 ultrasounds, and countless office visits and blood tests later, I was finally diagnosed with endometriosis and severe scar tissue (which resulted from my 3 C-sections). The journey to this diagnosis was long, hard, humiliating, and very troubling-but that is a separate story.

Just before Christmas I had my 4th (and hopefully final) ultrasound. On December 23rd, I received a call from my GYN who advised me that they had found an "abnormality" in my uterus. It could be a benign polyp, he said-but it could also be precancerous tissue or it could be cancer. 

It could be cancer.

Cancer.

I was not prepared for this. All of my other scans had been clear. That was part of my struggle, no one could find cause for the pain I was experiencing. But now they had found a cause.

Over a month later, I still have not fully processed what I may be facing in the coming months. Due to other health complications (diabetes and sinus tachycardia-a fancy term for increased heart rate), my biopsy that was scheduled for earlier this month was canceled. We are hopeful that we will be able to get it done in the next 10 days.

What I want you to know right now is that I am afraid. While I know God tells us (literally hundreds of times in the Bible) to be not afraid, I am afraid. 

I am not afraid of dying. I am not afraid of what cancer can do to my body and the pain and suffering associated with fighting it. 

I am afraid for my children, growing up without a mother. I am afraid for my husband, never finding love like ours again. I am afraid for my parents, having to bury their only child after they have both lost so much of their own families. 

Even if I don't factor the looming specter of death into the equation, I am afraid of what fighting this disease will cost my family. I already carry a burden of shame and guilt that I am often too sick to participate in activities with my children. I am often too fatigued to cook dinner and keep house and I have significant guilt that my husband has to pick up the slack in those areas. I know my children carry a burden that most children don't have to. I know I cause my family to worry, and that tears me up inside.

But through all of this. Through the pain, fatigue, suffering and fear-I know that God is always good. I have seen more of my Heavenly Father in the past few months than I ever imagined I could. So this is why I am grateful. 

Blessings,

Meri