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