3 Strikes Your Out OR 3rd Times a Charm

Well, it has been about a month since I last wrote. That's a sure way to get people to forget about my blog!!! 
As, you may or may not know over the course of the past year and a half I have tried to get into the Mayo not once, not twice, but three times. The first time was before I got really really sick and was admitted to Barnes Jewish. I was rejected that time I think, because I had not exhausted all of the resources around me. Then the second time was recently. I thought for sure I would get in because I had exhausted all of the resources around me. Within a week of applying to the neurology department I was sent a letter stating that there was nothing more they could do, but if my doctor wanted to talk with the "on-call" doctor about it they could. So, one of my doctors offices called and finally convinced the neurology department to take another look at my case. In no time at all I received a third letter stating they would not see me.

I believe it is easy to look at this as 3 Strikes I am out, there is nothing more for me to do but sit in the dug out and feel dejected. OR, I can choose to look at the Mayo rejecting me 3 times as "3rd Times a Charm" and here is why…

Over the course of the past couple of years I have been blessed to attend a retreat in Atlanta, GA for mom's with adoptive kids called Created 4 Care. The first year one of the leaders of the retreat mentioned how she had been so sick and couldn't walk and had to hire help etc. I wasn't  personally to that state quite yet, but I was very close. When I inquired what she had, I found out she had had Lyme. Shortly after  the retreat, I too was diagnosed with Lyme. This past year I attended the retreat again and the lady was doing awesome. I found out she had never even been treated with antibiotics; even though it took her a year she was all better. AMAZING! I wanted to know where she had gone and what treatment she had done.

In the meantime at the retreat, right after worship, the lady sitting next to me asked me if I had Lyme. Kind of an out of no where question! I told her yes and she proceeded to tell me she had been looking for me because someone had mentioned me to her and that I had Lyme. She was excited to have happened to sit by me (this is not a small conference people) and wanted to talk to me about herself and her friend's experience with Lyme. She had been struggling for years and but she had just gone to a doctor with her friend there in Atlanta and was thinking about going to see him. Her friend had had Lyme and was better after about a year of treatment. Guess what, she went to the same doctor that conference leader had gone to.

So I took this all in and thought it was cool and that I should see what kind of treatment this doctor did and if there was anything like it in MO, because GA is kind of far to be going to the doctor. When I got back I started some alternative treatments and seemed to be getting some better but progress was slow, which is why I finally decided to try the Mayo. I was super unsure about the Mayo and I kept praying and having friends pray about getting in because I believed that if that is where I needed to be God would get me in. However, I felt very very unsettled about it. When I didn't get in I started thinking about this place in GA and started considering going there as a real possibility. I was not content to sit in the dug out just because the Mayo wouldn't get me in. I was not content to go back on antibiotics that would continue to destroy my gut and not heal my Lyme. I was not content to be told that my problems were neuro-psychological when I had therapists telling me they did not believe this to be my issue.

So, I made an appointment and I went to GA. It was about an 11 hour trip that turned into about 13 hours. This might not sound bad but I don't travel well these days so by the time we arrived I was a shaking mess. On the up side it was great to actually be able to spend one-on-one time with my husband for that many hours with no interruptions. I think the appointment is something I am going to have to write about in another post because it is too interesting to not give you details. Right now, I am off to rest. Please check back soon, I have so many blessings to share.

Trust & Quietness

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight." -Proverbs 3:5-6

"…In quietness and trust is your strength." -Isaiah 30:15

Anyone who knows me very well would probably describe me as someone who often has a certain amount of anxiety. I believe it frequently takes on the disguise as "drive"; always wanting to be moving or get something done.  This can actually seem like a good thing at times, the desire to accomplish goals and see things through, but in reality the anxiety is a lack of rest and contentment.

When I first got really sick and had to go to Barnes Jewish Hospital, my mom got so aggravated with me, because the doctors asked me if I worried a lot and I told them no. My mom knows me pretty well and she knew this was not the full truth. Of course I worry!

The anxiety has been rapidly growing in me the past week. I am so tired of going to doctors and being sick. My attempt to get into the Mayo is because I am tired of going to doctors, being sick, and I can't afford the treatments that are required for Lyme. But here is where the anxiety and worry has started building up in me…what if I don't get into Mayo, what if I do get into Mayo and they ignore my pain or aren't open to Lyme or try to pigeon hole me into a diagnosis because they aren't sure. What if I need to go to this place in Arizona instead of Mayo, because they have been studying and treating Lyme for a decade. What if, what if, what if??????? Let me just tell you I have not been at peace.

So, I was praying last night as I woke up throughout the night the scriptures about anxiety and God's consolation. This morning as I am spending time with God, the two scriptures from my devotional are about trust and quietness. When we trust in God, our creator - the one who knows all things and is in control of all things, the path we should walk becomes straighter and not so curvy. Its the curves in the road that throw me off: like learning to ride a bike and once the corner comes up not knowing how to steer and thus falling to the ground. But trusting in God, letting him steer, my path becomes straighter and less scary. In addition when I allow my mind to be quiet and not filled with the "what ifs" my trust in God can grow and I can be strengthened.

Believe me, even as I write, I am having trouble allowing my mind and heart to be quiet and trust in God. There is a part of me that clings to the worry. Its in my human nature to want to control, get things done and worry about the outcome. Relinquishing these things is what God desires for me and for everyone. To rest in quietness and trust him fully, because he is knows what is best and is in control. A few days ago I asked you to pray about me getting into Mayo, but what I really need prayer for more than anything is that I will be quiet and trust in God.

With Mayo Please

It is 3:40 AM and I can not sleep. Totally unusual for me; this never happens; when my head hits the pillow I am out. I have been in pain all yesterday, couldn't drive, shaking, grunting tick that I have etc. It was a very hard day. Luckily I have an amazing mother who took me to the appointment I thought I had (I had wrong day, it's not until today) and took care of my kids and myself for the entire day. Super blessed!

I am still uncomfortable, regardless of the fact that I have taken all the medicine I can take and have been laying down for hours now. Usually this medicine knocks me out but for some reason, not tonight. So, I decided to blog. I find it therapeutic and hopefully it helps others too.

The latest news in my life is that I am trying to get into the neurological department at the Mayo Clinic. It is difficult to get into the Mayo. I was denied over a year ago when I tried, but I have regressed drastically since then and just about exhausted my resources here. When I called to ask for an appointment and gave them my history I literally said, "Please do not deny me an appointment. I have 3 kids and it is very difficult to function." It takes about 2 weeks for them to review my case and make a decision on if they will see me.

If you are reading this, please pray. I know God is able to get me in if that is the next step I need to take. I am trying to do my part by calling my doctors and having them contact the Mayo to recommend me. Not sure how much that helps at this point, but like I said, "God is in control."

I decided it was time to go this route by some prodding of friends and doctors. Also, while I believe that ONDAMED and Chinese Herbs with Acupuncture have been beneficial, I am still struggling majorly (I do recommend both of these treatments as alternatives or in conjunction with antibiotics). Plus, as you  probably know alternative treatments are not covered by insurance. This makes a tremendous financial burden. I have decided that I can not continue to go further in debt and need to seek out the Mayo. If I am unable to get in; well I don't know what the next step will be but I trust God will show me.

Yes, I have written "trust in God and God is in control" several times in this post. I have really been struggling because I have done everything the doctors have told me to do. EVERYTHING, including seeing a psychiatrist!! That was a nightmare experience I don't care to write about now, but I am not giving up on that avenue either and will try to see another one. I am growing very very weary and the best thing I know to do is to feed my soul with God's promises. He is my rock. My peace. My joy. My deliverer. This is the scripture I have been going over and over this week…
      "But blessed is the one who trusts in the Lord, whose confidence is in him. They will be like a tree       planted by the water… It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit." -Jeremiah 17:7-8
What a comfort to have God's words to strengthen us. Thanks be to God.

Thankful for Help

I haven't written much lately and especially on what is happening in my own body. No particular reason beside being busy and and not really loving to blog. I find it much like journaling, which I don't enjoy, only a bit cooler.

That being said, this will be a short post.
Thank you to everyone who is always so willing to help us. Life has not been easy but having others to help offset the load is a gift that I can't tell you how thankful I am for. Prayers, help with my kids, help with my house, help by being a listening ear, help with meals, help with making a room/bath so I can have someone live here at times to assist us, on and on and on. God has blessed our family in so many ways and I am thankful.

"A Friend Loves at All Times" - Proverbs 17:17

More on Lyme and Psychological Issues

I continue to be faced with people who do not understand Lyme and simply don't care to. If a diagnosis is not given by a "traditional" practitioner then it is completely dismissed and not looked further into.

Recently a friend sent me an interesting interview from TruthOut with Sini Anderson. Anderson was diagnosed with Lyme while filming the documentary The Punk Singer, on artist Kathleen Hanna who also happens to have Lyme. There was a quote by Anderson from the interview that resonated with me,

" ...if you're a woman and you admit anxiety or depression, you just, you know, it's really easy for doctors to just put you off in another category as somebody who could use a little bit of therapy. And you know what? Quite honestly couldn't we all use a little bit of therapy?
But, we're not . . . we have to think about what doctors we're talking to, what symptoms we're presenting to them, because we can't be brushed off into a corner just saying, "Okay, this is somebody who is just sad." It's like, "no, I'm not sad. I'm telling you that I'm having problems with my speech. I'm having a great amount of pain. I can't think clearly anymore," and that "yes, there's depression that comes along with that and there's specific Lyme anxiety, that isn't your run-of-the-mill general anxiety." It's complex."
-Sini Anderson from interview with TruthOut

Anderson is a feminist as well as a director. Although I would not categorize myself as a feminist, her experience of being put off by doctors as someone who just needs therapy is something that I believe may indeed be a more prevalent response to women with Lyme . It is maddening. The interview is really interesting and worth reading. If anything, what Anderson has to say about responses from the "traditional" medical profession is spot on. The controversy on diagnosing Lyme needs to be looked further into, and in the meantime patients need not be written off as having solely a psychological problem.

So, What's the Diagnosis?

For people with Lyme multiple diagnosis is the norm. Lyme is extremely hard to diagnosis and "Chronic Lyme" is still rarely recognized as an actual disease amongst many people in the medical profession. A lot of this has to do with testing that is less than perfect, and testing from labs that are not validated by Center for Disease Control (CDC).

"At least seven labs in the U.S. have been denied permission to offer Lyme tests over the past decade in New York, according to state records obtained by the New England Center for Investigative Reporting. The state is the only one that performs a rigorous review of tests to ensure they identify what they claim to before they can be offered there." - Beth Daley and The New England Center for Investigative Reporting (this is a really interesting article, worth reading)

This is not comforting information for those of us diagnosed with "Chronic Lyme", especially if we have used a lab that is not "approved." I hesitate to share my personal tests results because of the response I have received in the past from both the medical and non-medical community. The response has been mixed, and thus very difficult to deal with. However, with the hope that sharing my experience will help others,  I am going to give you an overview.

When I first got sick I had a tick bite (I have had tons through the years in addition to this one). The bite was on my head. I have no idea if I had a bulls-eye-rash and I did not save the tick. I began to experience the typical symptoms that are common with Lyme, but did not make the connection for at least 7 months; neither did the doctors. In fact when I first started wondering if it could be Lyme, I asked several doctors and was told if I didn't have a rash, then no and also, that we did not have Lyme in MO. OK, (unfortunately this was at a very,very reputable hospital) so what did I have?

The first diagnosis was Fibromyalgia and then later Functional Neuro Symptoms. When diagnosed with Functional Neuro Symptoms I was told I needed to see a psychologist and a psychiatrist, that I needed to be on a lot of medicine, and I would have to deal with it the rest of my life. This was not a comforting thing to hear, but neither is a Lyme diagnosis. Truth is, according to the exhaustive list of symptoms for this diagnosis I do have Functional Neuro Symptoms and so does every other Lyme patient. Unfortunately, I have taken and do take the medicines recommended for this diagnosis and have/do see a psychologist and yet still continue to have the same symptoms. Some say I  haven't been medicated correctly, and others say don't get on any more medication. What a quandary I am left in!!!

To digress a bit…when you are sick and trying to find an answer to why you are so sick multiple diagnosis and people's opinions can be very emotionally draining (this does not help symptoms regardless of diagnosis). This is probably one reason people withdraw, get discouraged, get misdiagnosed etc. etc.

So, you are probably wondering what I decided to do. The answer is BOTH. I will continue to be treated for Functional Neuro Symptoms and I suggest that anyone diagnosed with "Chronic Lyme" do the same. Seeing a psychologist can be extremely helpful and necessary. Getting on a neurological medicine such as Gabapentin can help with neuropathy and other neuro symptoms, and antidepressants are an obvious aide when dealing with a debilitating disease. But, I am continuing to try treatments for the Lyme as well based on the recommendation of doctors that are constantly being educated on Lyme.

As far as sharing my personal test results, I will in another post!

Lyme Research Alliance 2014 - The Faces of Lyme