Chronic Illness and Communication with Health Professionals

Today, I had an appointment with my therapist. He helps me keep my head on straight. I have been seeing him for a number of years. Why? My life is crazy and sometimes it is good to hear a voice of reason in those crazy/wild times, something I am not able to do for myself. I have been in emotional pain for a long time. I have dealt with depression and anxiety most of my adult life.

I like to keep him on my list of professionals I can call at crazy/wild times in my life. Having someone able to hear me is so helpful.

He is also helpful in dealing with the terrible twins (not my human sons) Rheumatoid Arthritis and Fibromyalgia. They are like terrible children sometimes that can not be contained.

Sometimes writing about what is going on inside me is the only way to keep those terrible twins from sad to say, taking my life away or consuming my life with them.

Sometimes, I am afraid to talk to other professionals about exactly what is going on in my mind when they flare up. Mainly cause I don't want to be taken the wrong way.

But the one time, I did talk up about how anxiety and depression take a big role up in my life I was met with a smile(from my dr.) and with an affirmation that indeed he understood.

I told him how I deal with anxiety/panic attacks. I need to hear the voice of reason, the facts about having panic attacks, I'm not going to die, I will be okay, etc. Sometimes that voice of reason comes from me, talking to myself letting the panic know it isn't going to get far. During that day this technique works very well. In the middle of the night however, that voice of reason isn't so strong. So I have been working on that.

That is why I let my dr.(and therapist) know, because my sleep gets disturbed. The panic knows it can disturb my sleep, and nightmares also know my sleep can get disturbed.

So when I explained to the dr., "that there is this voice that keeps telling me I am going to die if I go to sleep", he finally got the picture. He said, "Tammie, if I had that voice going off inside my head in the middle of the night that told me I was going to die, I sure would not want to go to sleep either!" Both of us know understand that this cycle needs to be broken before it gets too far.

Then he said, "You know that gives me so much insight to what it is like for you and many of my other patients that deal with panic disorder".

He wasn't hesitant to give me a prescription for medication. He knows I have told him my struggles with panic and depression and he doesn't hesitate to help me out in the way he does. Why? because I am up front, make an appointment with him early on before my symptoms get away from me.

I know I am safe with him in telling him the crap (I hope it is okay that I use that word and it doesn't offend anyone) that goes on. I am so relieved I have two professionals (My family dr. and my therapist) I can be real with and not worry what the outcome is going to be.

So when I go in with a complaint about anything else he takes me seriously. I am glad for that. I don't need someone who will question my need for medication, specialists/tests or alternative treatments.

He does however question me about my symptoms so that he understands my whole picture.

There are times though, like early this year, after coming back from serving out of the country, I showed up in his office so ill, but yet I am laughing and crying at the same time. He knows at that point he is going to really have to draw me into a conversation to get the information he needs out of me. I am thankful for that and that he does not write me off as a nut case. I am smart enough to call him during the day too so that he doesn't have to send me to the ER to let an er dr. deal with me.

Yet then there are those times where I have called him during the day where he will say, "Tammie that is something the gyn dr. needs to help you with, please call him, but in the meantime if you need anything call me immediately!" I did indeed end up doing that, sooner like the next day because of a gyn problem that got out of hand. I HAD to go to the er then.

I guess what I am writing about here is that if you are ill, go to the dr. sooner rather than later. Get to know your doc. over the course of time, so that you can develop a relationship with that person. They get to know you, understand who you are. That way when something does arise that is an emergency they don't hesitate to prescribe medications over the phone, refer you to a specialist, or help you get to the er.
(with this dr. I have had that happen, not often thank goodness)

New Diagnosis.

Just when I think things are going to calm down with my health, another health problems shows up.

I have been having symptoms of neck pain, pain that radiates into my left arm to my elbow, and into the upper part of my back and head for nearly a month. I have been also having headaches.

Today, I went to visit my family doctor. By the way this guy is incredible! I am pleased that he talks to me about my test results regardless of them needing to be commented on, he sends me to specialists when he knows something is up but wants to get more information, and he listens to me and takes me seriously every time I walk into his practice. I am so glad that he does. He knows my struggles with illness and I help him to understand what it is like to have depression, anxiety, rheumatoid arthritis, depression, high blood pressure and whatever else that happens. I am able to be straight up with him and tell him exactly what it is like for me to have these illnesses/diseases.

Back to the visit, I went in to get results of a recent neck mri. Not good news, but not too terrible news. I have three bulging discs, one vertebrae that is bruised, and a impinged nerve.

I am not really sure how my neck the trauma that is showing up on the mri and giving me pain.

I keep wondering when my body is going to calm down and quit attacking itself.
I feel my body is betraying me, it is a traitor. I am a person who loves to be active in church life and personal life, lately though I am unmotivated because of constant chronic pain.

I try not to allow my diseases consume my life, to where I think about it every waking minute. Course when I am not properly medicated that is what happens. Until I can get back in to see my family dr. I will go without enough medication.

I have found over the last month that pain is really taking over my life. I have realized that I have been isolated because of the want to stay home and hibernate until the pain is gone or less.

I often wonder if really all the pain I am going through is real. But then some medical tests proves that is truly real.

I have watched the movie, "As Good As it Gets", Jack Nicholson, the main character in the movie has an obessive compulsive disorder. In one part of the movie he shows up at the psychiatrists office on his way out of the door he looks at the patient's in the waiting room and says, "what if this is as good as it gets?" Then I think to myself, what if it things don't get better? My answer is "Tammie you are not going to get better, Rheumatoid arthritis and fibromyalgia are not curable diseases, but you can find ways to cope, and live better than you are."

BGEA: How to Survive in the Furnace of Adversity

BGEA: How to Survive in the Furnace of Adversity

September 9, 2010 - The darkness in my bedroom seemed to reflect the despair that pervaded my heart. As I lay bedridden, I couldn’t find any position that brought comfort or an end to the constant and searing sciatic pain that radiated down my right leg into my foot, interrupting my sleep. How much longer can I survive this? text I tried every recommended treatment, even surgery, but that only made my condition worse. I felt like I was being tested beyond my limits.

“Since I was shut away in my bedroom and seldom went out, I often wondered, Why should I go through this? How can God use me now?”

But God’s Word stood firm, and I saw the truth of Psalm 119:50: “This is my comfort in my affliction, That Your word has revived me.” When I felt like my fingers were slipping from hope, God spoke to me through His Word and strengthened me.

You may not be suffering from chronic pain, but you may be experiencing some other kind of “affliction,” such as a relationship that is emotionally debilitating or a job situation that is painful and stealing your joy. Life is filled with “affliction opportunities” intended to make us cling to God and grow stronger in Him. No matter what adversity may come our way, God’s Word is the only anchor that will hold us strong as waves of difficulty bash against us.

The Scripture foundation that held me firm when I wondered if I’d ever move or walk without pain and medication was 2 Corinthians 10:5: “We are taking every thought captive to the obedience of Christ.” Throughout my journey of intense pain, it did not fail.

When I first noticed 2 Corinthians 10:5, I envisioned a “thought” as if it were an arrow flying toward my mind. I grasped it and evaluated it by asking, “Is this true according to God’s Word or is it Satan’s lie?” I “took it captive” by receiving truth and casting away falsehoods.

When I moaned, I can’t do this anymore, I mentally grabbed the thought and asked, “Is that the truth?” Asking myself what God says about it, I reflected on Philippians 4:13, “I can do all things through Him who strengthens me.” God didn’t want me to depend upon my own strength, but upon Him. Therefore, I refused to entertain a lie. Instead, I asked for God’s power, and He lifted me up when I was down, often in creative ways.

Pain sometimes convinced me that God didn’t care that I was suffering. Again, I faced the idea and identified it as one of Satan’s lies because 1 Peter 5:7 told me the truth: “Casting all your anxiety on Him, because He cares for you.” When I worried I would be in pain for the rest of my life, I cast away the falsehood that God didn’t care, and I dug the anchor into my heart that God still truly loved me.

Since I was shut away in my bedroom and seldom went out, I often wondered, Why should I go through this? How can God use me now? I rejected that arrow of purposelessness because 1 Peter 5:10 promises, “After you have suffered for a little while, the God of all grace, who called you to His eternal glory in Christ, will Himself perfect, confirm, strengthen and establish you.” I may have thought God wasn’t using me, but God’s work isn’t only about representing Him, but also about being transformed. Sanctification most often results from suffering, and I could trust His ability to work in me however He thought best.

Day after wearying day, I was tempted to conclude, I don’t know how to persevere. But I grasped that arrow of thought and refused it, comparing it against the truth of 1 Corinthians 2:16, “But we have the mind of Christ.” Since I was walking down an unfamiliar path, I couldn’t rely on my own wisdom. God guided me, no sooner than needed, and never too late; even to the extent of surrender if God wanted me to be in pain for the rest of my life.

It turns out that wasn’t God’s intention. A cyst of blood and water had formed on my nerve after my surgery. And as it dissipated, my pain subsided. After walking down the dark road of pain for 10 months, I am more convinced than ever that God’s Word is my solid anchor. Warren Wiersbe once wrote, “When God puts His children in the furnace of adversity, His loving hand knows how long and how much. He keeps His eye on the thermostat, and His hand on the dial.”

I’ve lived out that idea. Now that my pain is almost completely gone, I’m able to say with the Psalmist, “It is good for me that I was afflicted, That I may learn Your statutes” (Psalm 119:71).

While I was being challenged, it wasn’t easy to consider my circumstances “good,” and I didn’t go through my journey perfectly. I wish I could have had more joy and trust in God, but I also know that much of the “good” I experienced bolstered my confidence that God’s Word holds me firm. In whatever way I may be afflicted in the future, I’ll be even stronger in taking every thought captive to the obedience of Christ.

Scripture quotations are taken by permission from the New American Standard Bible, (c)1960, 1962, 1963, 1968, 1971, 1972, 1973, 1975, 1977 The Lockman Foundation, La Habra, Calif.

About the Author:

Kathy Collard Miller (KathyCollardMiller.blogspot.com) is a women’s conference speaker and author of many books including “Women of the Bible: Smart Guide to the Bible.

Exhaustion.

I have been married to my husband 25 years, the mom of three young adult children, 4 cats and a dog. I work part time as an administrative assistant at a local food pantry.

I wished that sometimes I had my own administrative assistant or even a housekeeper who would do all the tasks that take up so much of my energy, so I can do the things that interest me the most. But since I don't have an administrative assistant or a housekeeper, I do those things when I am feeling well.

I have noticed when the pain is constant I get exhausted. Resting and relaxing is not really what I would like to do, but I do in order to get some reserve energy when I am not in pain, and when I am in pain I rest so that I don't become even more exhaustion.

I really don't like resting, I feel like life is passing me by. I miss out on things I would normally take part in. I have missed social gatherings, parties and church services.

I want to be able to get up move around, but to be honest with you the exhaustion overtakes me. Doing any activity when I am in the I can't move stage only serves to make me even more exhausted. Adding to my exhaustion I take medications that make me sleepy. I often feel like I am going to fall asleep if I am not active. Sometimes because the exhaustion is so much, I could sleep 12-13 hours wake up, and feel as though I haven't slept a wink.

I have had people ask me how I can rest so much. Honestly I thought I would not be able to rest as much as I do. I have not found it a bad thing.

I have found with fibromyalgia that when I am in a lot of pain and exhausted, all the things I enjoy doing, being up and around, working on the computer, reading, and watching tv are difficult things. During the times where I am in the I can't move stages, being in too much pain and too exhausted to do anything, laying in bed with my head against the pillows, under a soft blanket is usually all I want to do and all I am able to do. Feeling the texture of the fabric and the softness of the pillows I'm okay with that.

When I don't give my body what it needs, rest, it is all I can think of. If I am at work, I can be physically at work but my mind is at home resting in bed! On days like this going to work is hard for me, a project that would take me ten fifteen minutes takes longer. I have to really watch what I am doing, as my work turns into a sloppy unprofessional mess.

I do wonder what life might be like if I weren't dealing with fibromyalgia and rheumatoid arthritis. I try not to go there to often in that thought process. Wishing is not going to get me anywhere.

My Journey With Chronic Illness and Pain

For those of you who have been following my blog about the mission trips I have been on, I will be blogging for a time about my journey with chronic pain and illness. I am planning to return to Nicaragua in January 2011, this time it will be a very special trip. I will talk about that more after next week:

National Invisible Chronic Illness Awareness Week September 13-19 2010


My journey with invisible illness started in April 0f 1999. I woke up on a Sunday morning with numbness on the right side of my face. After my boss who is a chiropractor examined me, he suggested this would be one time where he would ask me to make an appointment with my personal physician.

My doctor felt that the numbness could be from a sinus infection and prescribed me some antibiotics and decongestant. I was instructed to call him on Friday whether or not I was feeling better.

Long story short, on the second visit concerning the right side of my face being numb, he referred me to my first neurology doctor.

For several weeks, the neurologist treated me with a anti-seizure medication called Neurontin. In the time between my next appointment I was to have an MRI of my brain and spine to look for any abnormalities. All other tests I went through to determine if I had some other neurological disorder or MS came back negative. Meaning...my body was not showing any signs of MS or any other disease.

The neurologist suggested I continue taking the medication and asking me to follow up every month. Eventually I wanted more answers than what he was giving me. By this point, I was taking 900mg of Neurontin several times a day.

Eventually, I went for a second opinion. In the appointment the neurologist was very kind and looked my history over and decided not to switch my medication yet, as the medication was helping and he didn't want for me to suffer. He mentioned to me that the other doctor's impression was that I was stressed emotionally. He then stated, stress does not cause this to happen, this is not in your head Tammie, you are ill, I am not sure with what but I will figure it out. He did explain that MS does take time to show up in the body and it might be years before we would find anything, so in the mean time he would continue to treat me with the medication I was taking.

I was very relieved the second neurologist confirmed my thinking about stress, and MS, neither was a contributor to what was going on with me, but I was indeed ill. With what we weren't sure. He did perform an emg and suggested by the way my body was reacting that possibly I had fibromyalgia.

All along, I am worried, I was facing living a life with some unknown illness and the doctors weren't ever going to figure it out! I worried about what it would mean for me as a mom, was I going to be able to be a mom, what does this mean for me as a wife, and other roles I had in my life.

I continued to take the medications I was on for another couple years. Along with visiting the neurologist. Every few months I'd slowly go off the medication for a month to see if the symptoms persisted. Finally, the symptoms did go away.

I continued to have difficulties with depression and high blood pressure. I had to have regular labwork to keep track of my liver enzymes and other important organ functions. Along the way the dr. did discuss with me that I may have fibromyalgia as I was starting to have pain and aches throughout my body. But yet he did no follow up work from the neurology lab work I had previously because those had resulted in negative results for Lyme disease, and a host of other diseases. My rheumatoid factor did come back high at this point, my liver enzymes also came back elevated. His thought on the liver enzymes being elevated were that I was taking medication was making them elevated. He did not check any further.

In 2006, to switch doctors. My daughter had needed to find a doctor who treats adults. I decided at her visit I would make an appointment and ask some questions that still plagued me about my health as I was not feeling any better even though the numbness was gone.

In my first visit with my current family doctor, he took blood work, urinalysis, and asked many questions about my health and the medications I was taking. In the time he spent with me he told me he felt I had fibromyalgia and that the only way to diagnose it was to do tests to exclude every disease that would be similar to fibromyalgia. I was to return in two weeks for a visit to discuss the results from the labwork.

Two weeks later, I find out my liver enzymes and rheumatoid factor were elevated again. The doctor was quite concerned about my liver showing signs of damage. He wanted to make very certain something other than medication and being overweight being my problem. I was to have an ultrasound, which showed I had a fatty liver and gall stones! I was immediately referred to a surgeon and had my gall bladder removed and had a liver biopsy to determine how damaged my liver was. My liver enzymes continue to be elevated but not as much as it was when I had my gall bladder. Slowly I am losing weight.

I did eventually go to a rheumatologist was diagnosed with fibromyalgia and rheumatoid arthritis and put on medications for both.

Now I am living a life in the "know" instead of the "unknown". I am no longer sitting and wondering what the mysterious illness that is taking over my life and body.

I am learning that fibromyalgia and rheumatoid arthritis touches every part of my life. Sometimes the two hit so hard I can hardly move, other times like today I am able to get through the day without thoughts of being in bed. I also deal with depression and anxiety. I have dealt with them since I was in high school, back in 1979.