Irony or Fate?

Hello out there! Here’s my story for today:

We now have a new insurance; it usually changes every 2-3 years. However, now I cannot have my labwork done at my doctor’s office. I can only use a certain lab that is not available there on location. So, I had to find a lab I could use in my area. Done. No big deal. I had my visit with my doc Thursday and headed to the lab on Friday after work.

I know the medical building where the lab is located because it is in the area, and I have been there before to see another doctor of mine. As I exited the elevator on the 3rd floor, I looked to my right first to see if the lab was on that side of the hallway. BAM! The name if the Infectious Disease doctor I saw before being correctly diagnosed with Lyme Disease, was glaring at me. I started to swell with anger. I wanted to march in there and punch him in the face. Really! I said out loud, “You have to be f***ing kidding me!”. Luckily, no one was in the hall to hear my sailor mouth. My mind started swirling with all kinds of thoughts from that visit I had with him over 19 months ago.

When I was was referred to him by my PCP, it was a last ditch effort on her part. She is my family doctor, and both of us had been trying to get to the bottom of my fatigue, sleep disturbances, nausea, back pain, etc. for the past 3 years, I was in her office about every 4-5 months with symptoms, the worst was the crushing fatigue and every time, I tested positive for an EBV infection. I had been tested for everything and probably twice such as Lupus, Rheumatoid Arthritis, Vitamin D, infection, Thyroid, you name it. For the joint pain and numbness in my feet, I had seen an orthopedic doctor and a neurologist and had had a spinal and brain MRI. Nothing. After about the 5th time testing positive for an EBV infection, I was referred to the OD doctor. What was causing the recurring EBV? All my blood tests for the past 3 years were sent to him as well as any of my medical record from my PCP. He had my whole life in his hands.

By the time I headed to his appointment in the early spring of 2013, I was a complete mess. I was so exhausted, I could barely make it through the day at work. I was in pain much of the time. I was having headaches of which I had never before in my life. I wasn’t sleeping well, I had severe neck and lower back pain, shoulder and hip pain, stiffness, indigestion, nausea, you name it! I also was worried. By this point, I had been ill off and on, with symptoms cycling and becoming worse for the past 3 years. I knew something was really wrong. My PCP had been talking about Fibromyalgia and Chronic Fatigue Syndrome but she wanted to rule out any other options and so I had my appointment with the ID doctor.

Now, I am no sissy pants. I take things as they come, and I am a problem solver. I have always had a crazy awesome work ethic, and I take pride in what I do. At many junctures in my life, I was working 2 jobs. I exercised, and I was social. But in the past year for sure, a lot of that had changed due to my health. I looked forward in a way to this doctor visit because it would assumingly help rule some things out and perhaps even help me find an answer. Let’s just say, I had a lot invested in this visit, and I had faith in my PCP’s referral to this ID doctor.

It was the worst doctor visit I have ever had in my life. Literally. The doctor came in and began asking about why I was there and my symptoms. I explained the EBV activations. He stated several times that EBV is not recurrent and that the odds of this happening were slim to none. Ok. I asked about the blood work showing the EBV infection. Oh, your doctor didn’t run the correct labwork. Everyone shows “exposed” to EBV as mono. Ok. As far as my exhaustion, I needed to relieve some of the stress in my life. Really? For my daily horrible headaches, which I never experienced before, Drink more Water. At this point, I am starting to get aggravated, as much as I can in the exhausted state I am in. For my neck pain? Well, well, you are a woman, so I am sure you carry your purse to one side. Maybe you need an MRI? No, doctor, I just had an MRI this past summer and nothing, NADA, showed up. Lower back pain? Hmm. Right hip pain? Go back to your ortho doc. This went on for about 30 minutes. For every symptom, he had an answer and a stupid one. By the end o the appointment, I was even more confused, angry and emotional than I had been walking in. At the very end, I asked about the soreness all over my body. He pushed on some pressure points and said, Yep, you probably have Fibromyalgia. I asked for a doctor referral. He told me he would not refer me and that I had to go back to my PCP for a referral. OMG!! WTH. Are you kidding me?!?

I cried all the way home. From sheer exhaustion, from getting no answers whatsoever, and from getting no help. I felt so hopeless. I was drowning in all of this unexplained pain and fatigue and there seemed to be no light at the end of the tunnel. Although I drove away angry at him for his condescending manner and his refusal to even so much as take blood, I didn’t realize how terrible he really was until I was actually diagnosed. Two months later, thanks to my researching online and finding a doctor whose specialty is FMS and Chronic Fatigue Syndrome, I tested full blown CDC positive for LYME DISEASE.

So, now, after being in treatment for 18 months and still plugging along, I walked off the elevator and I was taken back to my visit with HIM. I will have to have all of my lab work done there, 4-5 times a year, and I will have to pass his office. I am still trying to understand why this has come back into my path after all of this time; I wonder what I am supposed to make of it. Any suggestions or ideas? I know what I want to do, but it wouldn’t be productive nor healthy for me.

If you think of a productive way I can deal with this doctor, please let me know!  I feel like my doing nothing just condones his ignorance and his unbecoming attitude. It feels wrong to do nothing, Like he did to me.

Peace, -B

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Cliff’s Edge

On the edge!

On the edge!

What a week!! I thought there about Tuesday and Wednesday that I wouldn’t make it, but guess what? I did! I wonder at what costs though. I say this because I have been struggling all weekend with symptoms. Most aggravating is the all over soreness and pain. Then, there are the IBS issues. And then the indigestion issues. All of this hit me on Friday at school, and it hasn’t let up. NO MERCY!

Without TMI, I just feel all over terrible. If I can get one issue to subside, another flares up. I have tried epsom salt baths, resting, pain pills, alka selzer gold, heating pads, gingerale, tea…..nothing, nada. I am pretty sure this is what is mean by herxing!  I have tried taking my mind off the total uncomfortableness of being me by reading, Facebook, grading essays, playing Candy Crush, watching Netflix. Alas, I just can’t get out of myself enough to feel better.

I missed an event last night, a family event, and so that was tough. Then, today, my husband is working on his new shop area and of course, I am in no shape to help. Instead, my 60+ year old in laws are slaving out there. I feel so useless. It all hit me this morning in the shower, which was a chore in and of itself, and I just gave in and started crying. I do have meltdowns like this every so often but it’s been awhile. I do not like it when this happens because I feel so helpless. I feel like I have lost some pieces of me that I may never get back. I feel like I am at the edge of a cliff, teetering, looking into a vastness, a place where nothing changes and I just continue to struggle every day.

I know deep down that this is just a culmination of being exhausted, stressed, and depressed. I guess being aware of all of these things helps? My husband says that it is a good thing to have a meltdown every now and then, to grieve about this illness. And, for the most part, I do feel better after my little meltdowns. How do you deal with all of the stress and symptoms of Lyme disease? Any tricks you can share with us? I think I need some Kid President today.

Off to a nap. Peace – B