Update on My Chronic Life

So, it has been a while since I have posted an update.

I am still suffering from fibromyalgia, which seems to be getting progressively worse. I have an appointment with my PCP on July 15th to review some increasing and new symptoms. He has some concerns that fibromyalgia was a misdiagnosis and I may have MS or another neurological/auto-immune disease.


I have resolved my pelvic pain issues...praise the Lord!!!  I had a hysterectomy on 5/13/16 and have been steadily improving since then.

I have been newly diagnosed with degenerative disc disease and my doctor has determined there are clearly other issues going on in my back, so they are scheduling and MRI.  In the meantime, I received a nerve pain block injection in my lower back today, which has helped the right-sided pain I was having in my lower back and right thigh.

Unfortunately, I have not found an answer to deal with my daily, debilitating pain.

I am taking steps to see a new pain management doctor that specializes in both fibromyalgia and spine pain.  Please pray that I will not only get answers, but solutions.

Blessings to all of you who pray and all of my fellow pain-warriors!

-Meri

An Open Letter to the Doctors that Dismissed My Pain

Dear Gynecologists,

I came to you after multiple ER visits, continuous, excruciating pelvic pain, several ultrasounds, 2 CT scans, and countless pelvic exams. One of you told me I had vaginal wall muscle strain and should try pelvic floor exercises. This was your diagnosis after spending a grand total of 10 minutes with me, not taking a gynecological history and failing to take into account that I had just had 2 internal ultrasounds within the past 3 days-so yes, my vaginal wall muscles were sore.

So, I sought a second opinion. I, again, endured another pelvic exam, but this time you gave me hope. You took the time to talk to me and even advised that you believed I had endometriosis, adhesions, or a combination of both which would best be treated with a hysterectomy. You told me you would request my medical records and call me the next day to put me in touch with the surgery scheduler. 1 week later, after numerous calls to your office, you called me at 8 pm to tell me you did not think there was anything "pathologically causing my pain" and would not be taking me as a patient. I am not an idiot, I know that this means you think it is all in my head.

So I took a month off. I dealt with the pain, but did not seek any further opinions. I think I was hoping it would just go away since I had been told twice that I was imagining the pain to begin with.d

But the pain continued, and got worse.

So I went to a 3rd gynecologist. And she listened. She examined. She also believed I needed a hysterectomy due to endometriosis or adhesions or both. She referred me to a specialist as I was a complicated case. I had such hope.

The purpose of referring me to this specialist gynecologist, was with the idea that she would at the very least she would perform a laparoscopy to get a better idea of what was going on to cause my pelvic pain. But that is not what happened. She put me on the birth control pill to see if that helped my pain which would then confirm a diagnosis of endometriosis. It did not help my pain. It did cause me to bleed continuously for 3 months. After another, very painful, ultrasound and a D&C to remove a benign cyst from my uterus, she discharged me from her care and referred me to another group located about 1 hour from my home.  At our final appointment, she indicated that because she was unable to find anything (even though she did not do the laparoscopy), my pain was likely psychological rather than true physical pain.

I am now on GYN #5 and guess what?  I have a hysterectomy scheduled for 5/13/16. I have been diagnosed with endometriosis, an endometrioma on my left ovary and adhesions.

To all of the physicians that were not willing to listen, or were quick to believe I was exaggerating my pain-shame on you.

It should not take almost 1 year and 5 different doctors, countless ER visits, and a plethora of tests to diagnose this. And the biggest shame of this entire process is that it has been this way for decades.  My mother suffered from endometriosis for 15 years before she had an emergency hysterectomy at my father's insistence.  I have at least 10 friends that have had similar experiences before someone finally listened and gave them the treatment they needed.

This is a blemish on the face of our medical system. The problem lies within the fact that doctors are afraid to prescribe narcotics to control pain due to unrealistic DEA regulations, if a problem does not show up on a test or scan-doctors are quick to state that the issue must be in the patient's head, and doctors tend to believe women less than men when it comes to pain caused by something they cannot see.

I am sick. I have suffered for months with intractable pain. I have been humiliated and dismissed. This needs to stop. Now. There is no excuse for this type of treatment of women.

Sincerely,
Patient in Pain

The Power of Prayer

Yesterday I experienced the intervention of the God of all creation on my behalf in a way that I have rarely seen. I also saw tangible results of the power or prayer.

We spent 4 hours at the UNC Gynecological & Pelvic Pain Clinic at Hillsborough yesterday. The appointment started off terribly-the nurse told me they would not be prescribing any pain medication to treat my chronic pelvic pain. My previous physician who had discharged me from her care to turn me over the this clinic had written just enough medication to get me to my appointment date at UNC.

But then God intervened. The PA to my medical history and then told me she was going to take the case to Dr. Stegge. Now, a few things you should know about Dr. Stegge-he has been in the top 1% of all gynecological surgeons in the nation for the past 10 years; he is the former Director of Gynecology for all of UNC; he is now semi-retired and only comes into the clinic 1 day per month to mentor the physicians there and review complicated cases.

Let me repeat that last statement: he is only there one day per month.

You cannot make an appointment with him. We did not know he would be there that day. But God did.

After an intense exam, he determined that surgery is the best solution for my problem. And he gave me a diagnosis. A diagnosis. Something I have been seeking for months. Endometriosis with an endometrioma and adhesions. The solution is a hysterectomy, something we have been told on and off for several months, but each time the physician back-pedaled and dismissed my pain as "in my head".

They wanted to do an ultrasound. The PA said she would call down to see if they could fit me in so we did not have to delay treatment further by scheduling it for a later date. She called at 2:45 pm at which time I contacted my Over-Comers group and asked for specific prayer, at 2:58 pm she came in to our exam room and told us to "book it" down to ultrasound because they could see me at 3:15 pm. Prayer answered. God intervened.

I now have an appoint on 3/9 with the best laparascopic surgeon in their practice to discuss the surgical process and hopefully get a surgery date.

Y'all-God showed up in a big way yesterday.

But God shows up every day in my life (and yours). We rejoice when we have experiences like I did yesterday, and that is a good thing. But, we need to be still and see the everyday miracles he performs in our lives as well.

God provided one more miracle yesterday-and every day. My amazing husband. My husband who takes care of me. My husband who holds my hand when I am crying in pain during an exam or test. My husband who holds me when I am wrecked with disappointment and anxiety. He is my gift from God and I could not get through this without him.

Blessings,
Meri

A Time To Rest

I know some amazing women. Women who struggle with chronic illness, but push through the pain and exhaustion and accomplish amazing things.

Right now, I don't feel like one of those women. I feel weak and tired and worn.

Ecclesiastes 3:1 says "There is a time for everything, and a season for every activity under the heavens."

I believe that this is my time to rest. To heal. To recognize my physical and emotional limits and respect those limits.

Rest is an important part of our lives, both physical and spiritual. God encourages us to rest, to be still and let Him take our burdens.

I am weary. I am have carried the burden of guilt and frustration associated with the symptoms of chronic illness for so very long, I am worn thin.

Every season in life has a purpose. Sometimes we have a hard time understanding what God's purpose is for us in a particular season, so he uses outside "clues" to let us know.

Rest is an important part of healing. And while I know that nothing short of a miracle will "cure" my illness (hence the term "chronic"), I do know that there are things I can do to improve my quality of life, and right now-that is rest.

Blessings,
Meri

All The Feels Effect All Of Us

I want to talk about a very challenging subject for me, and one that is often overlooked in regards to patients with chronic illnesses.

My chronic illness is not just mine. It touches everyone close to me, some more deeply than others. It seeps into every nook and cranny of my life, and theirs.

This results in a myriad of feelings from me and those closest to me.

I struggle with so much guilt, it is like a heavy burden I carry on my back every day. Guilt that I cannot provide what a mother is supposed to provide for her children-cooking meals, keeping house, participating in events. Guilt that I cannot provide what a wife is supposed to provide for her husband-keeping house, meeting his physical needs, caring for the children, grocery shopping. Guilt when I have to cancel plans with friends. Guilt that I have not made it to church in months.




I know my husband and children experience feelings of resentment at times. It is normal and natural when your life does not look like the lives of those around you, it is typical to look for someone to blame, and I am the natural culprit. I do not hold this against them. I love them too much to deny them the right to mourn the life they could have had if were not for this ugly monster called chronic illness.

I feel frustrated with many things-my body, my mind, the healthcare system, my family, and even God sometimes. I wish my body would just cooperate and the pain would just stop. I wish my mind could push through the pain and exhaustion and convince my body to just keep going. Don't even get me started on the healthcare system. I get frustrated with my family sometimes, when I feel like they don't understand or lack the compassion I desire from them. I get frustrated with God because I feel weak, not strong like so many of my fellow illness-warriors. I don't understand why He chose this path for me because I feel like I can't do anything for Him in this condition.



Chronic pain and illness, by default, usually leads the sufferer to depression. But it can also cause this issue with family members who have to watch their loved one suffer each day. This is not just a feeling-it is a serious condition and I encourage you to seek professional help if you feel that you or someone you love is suffering from depression.



Lately, I have been struggling desperately with all of these feelings. It has caused tension, arguments, and bickering in our home-which usually leads to more guilt on my part since I feel I am the root cause.  This is a troubled and weary road we are walking right now. I find myself short-tempered and angry far too often. I hear the words and the tone of my words and I cringe, yet I can't seem to stop them.

Hope is in short supply, but it is never completely gone. God is always good.

Stay tuned for an update from my appointment with the specialty clinic at UNC-Chapel Hill on 2/29/16. I am hoping this will be the place we find some answers.

Blessings,
Meri

Great Expectations

I think sometimes we expect too much from our doctors and nurses, forgetting that they, too, are human-just with a little more education than most of us.

So when I went to Women's Hospital of Greensboro on Friday night (2/12/16), I was hoping for some new answers, or at least a new treatment plan. After so many ER, doctor, specialist, and clinic appointments, you get to a point where you feel like you have tried it all.

First, a little background on how I ended up at Women's on that Friday night to begin with....

I have fallen into something of a doughnut hole of healthcare-released by my GYN surgeon because there is no further surgical intervention to be done at this time, and waiting for an appointment at the Pelvic Pain Clinic at UNC-Chapel Hill (which could take several weeks, even months).  In the meantime, I am still suffering from intractable and yet unidentifiable pelvic pain, but now with no one to treat it.

So my insurance company suggested I follow up with my regular GYN who suggested that if my pain was not controlled with what I had at home (ibuprofen and acetaminophen) that I go to Women's Hospital of Greensboro for treatment. So I did.

This is the first hospital that looked at me and said, "Yes, we want to treat your pain, but we also want to come up with a plan to keep your pain managed and you out of the ER until you can get in with UNC-Chapel Hill".  Did I hear that correctly?  They cared more about just getting me treated and out of the ER that night? For the first time in weeks, I had hope again....just a little, but it was there nonetheless.

I spoke with a wonderful Nurse Midwife who spoke with my GYN (who happened to be on call that night). They agreed that some tests were needed to make sure there were no major changes since my D&C/Biopsy procedure on 2/4/16, but they were also kind enough to recognize the level of pain I was in and administer some IM (intramuscular) pain medication BEFORE those tests.

Thankfully, everything came back clear.

I was given a prescription for pain meds and instructed to follow up with my regular GYN who will follow me and manage my pain until I am able to be seen by UNC-Chapel Hill.

This is a glimmer of hope in what has been a long and dark tunnel for me.

Sadly, one of the reasons I am up posting this blog after midnight is that the pain continues to increase and is less well-controlled even by the narcotics I have been prescribed. But I am still hopeful that the doctors at UNC-Chapel Hill will have answers-even if I have to wait months to get seen there.

God is always good!
-Meri

Running Low on Hope

On Thursday (2/4/16), I had a D&C and endometrial biopsy.  Thankfully the biopsy came back clean-no cancer. Sadly, this procedure has caused my chronic pelvic pain to increase dramatically.

I made some judgement errors in trying to take the next step in trying to solve this new chronic pain issue (I say new because I have been dealing with fibromyalgia for several years whereas this pelvic pain has only been a problem for about 8 months).

I knew my surgeon was going to discharge me because there is nothing more surgically she can do. Her plan was to refer me to a pain clinic in UNC-Chapel Hill (which is about 2 hours from us). In an attempt to save us time and money (and not really understanding the difference between the types of pain clinics), I found a closer pain clinic in our local area. And I made the mistake of signing the "contract" with him.

For those of you who are not familiar with "pain contracts" it basically says you will only get your meds from that doctor and no one else can prescribe, not even an ER, without the pain doctor's permission.

So after my surgical procedure, my surgeon prescribed a couple of weeks worth of pain medication, but I could not fill it because the pain doctor would not allow it until the 25th.

So in 2 days we have spend $600 on ER visits trying to get pain relief. One doctor gave me an IM (intramuscular) injection of dilaudid which gave me about 5 hours of relief. Tonight I managed to get a prescription for 15 percocet 5 mg which should get me through about 2 days.

I am not a drug addict. I am a pain sufferer. There is a very significant difference, but federal regulations have doctors terrified to prescribe the meds that pain sufferers, both chronic and acute, really need.

I am frustrated. I have been seeking answers for these issues for many months. I have been told by 3 physicians that "it's all in my head" and there is nothing wrong with me. I have been to more ERs, doctors, hospitals, and clinics than I thought I visit in a lifetime. 

I have been treated terribly at times, but many times I have been treated well. Usually there is at least one caregiver (typically a nurse-props to all my nurse friends out there) that is kind and caring.

Now I am going to ask you to do something. Please pray for me and my family, this chronic illness effects all of us. Pray that we find answers at Chapel Hill. Pray my pain is at least bearable until I can get it correctly managed.

Blessings,

Meri

Your Hands

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That you would take my pain away
You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine

When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands

When you walked upon the earth
You healed the broken, lost and hurt
I know you hate to see me cry
One day you will set all things right
Yeah, one day you will set all things right

When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands

Your hands that shaped the world
Are holding me
They hold me still

"Your Hands" -JJ Heller

I love the lyrics to this song. They speak directly to my heart. It's as if they were written for me for this exact time in my life.

I have unanswered prayers--sometimes God's response to prayer is silence, He is teaching me to wait

I have trouble I wish wasn't there-oh how I wish my health troubles were not here!

I have asked a thousand ways, that you would take my pain away-as I lay curled up in pain with tears streaming down my face, I have asked this repeatedly.  This is one of the hardest concepts for me to understand, but I know He works all things for good.

I am trying to understand how to walk this weary land-my husband and I struggle every day to figure out how to walk through this hard time in our lives. We are weary, the landscape is sparse and dry and each step feels like a struggle.

Your hands that shaped the world are holding me-God, the Great Creator, the One who spoke all things into existence, the all powerful, omnipotent, omniscient, God. He holds my little speck of a life, a life that sometimes feels worthless to me (but not to Him), a life that is often a mess, He holds my life in His hands. mind.blown.

Music speaks to me. I know that not everyone shares that feeling, but my favorite form of worship is through music. I truly believe God speaks through music and sends the right songs at the right time to those of us who are listening.

Blessings,
Meri

Community

Recently, my dear friend and I were discussing the concept of community. Specifically how community applies to individuals or families that are suffering from chronic/invisible illness.

I think it is somewhat simple to come together as a community and care for a friend or family member that has an acute issue-whether that is a short-term illness, or new baby, or job loss.  Members of our community in these cases, usually band together and organize a meal plan, visitation plan, and plans to help with basic issues such as house cleaning and child care.

Eventually the acute issue passes and everyone's lives return to some sort of normal.

But what happens when the trouble is not temporary. What happens when a family or individual has a chronic illness.

I know I posted on this briefly the other day, so this post is more of the evidence of God meeting where where I need Him. 

In the past few days:

• I have had a dear friend come and essentially clean my house from top to bottom, love on my children, and prepare us meals that we can cook while I am recovering from surgery. 
• I have had another dear,  but still somewhat new friend, offer to come to my house a couple of days each week and help with home-school, cooking, cleaning, and just entertaining the kids.
• My Momma is driving 4+ hours just to be with me. To physically be by my side and pray over me.

This is how you do community people. DO NOT be afraid to ask. Either way-don't be afraid to ask if someone needs help, and don't be afraid to express your needs to your community.

God loves you and does not want to see your tears. He wants to use His people to heal you and help you in your time of need.

Blessings,
Meri

Humbled By Being Loved

My mother is coming on Wednesday to be with me and my family as we go through the process of my D&C and biopsy.  I am so thankful that she will be here to ride the roller coaster of emotions we are in store for.

However, as every daughter can probably agree, I fell this inane need to deep clean my house before she arrives. Call it my need to prove I can keep it all together, or just a need to be as good a mom as I remember her being when I was a kid.

So today, my sweet friend, Meredith (I know-great name!) came over. I had asked her to help me supervise the kids doing the chores that needed to get done by the time my Momma got here Wednesday night.

Instead, she showed up with food and made us chili for today, a crock-pot meal for tomorrow and a casserole for Wednesday. She also scrubbed my kitchen from top to bottom, worked on laundry and engaged my girls in each activity while allowing me to get some much-needed work caught up on.

She just showed up.

That is what God calls us to do, when one of our brothers or sisters is in crisis or walking a hard and weary path, just show up. He has given us each given us gifts that can benefit others in ways we may not even understand.

So, thank you, Meredith, for just showing up.

And, thank you, Lord, for Meredith....and cake, thank you for cake and someone to eat it with.

Blessings,
Meri

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