Tuesday, January 21, 2014

Silver Lining

January 11, 2012

It has been awhile since I have written. For a long time I have known this disease moves around continually in my body over time and in the last few weeks it moved to my dominant right hand. I lost all function to move it; it was very swollen with fluid and was painful to the touch. If anyone would bump it I would scream in pain. It was funny trying to use my left hand eating spaghetti one night. The disease is also in my jaw and has limited my ability to open my mouth. I have lost the ability to yawn and so my yawns are very pitiful (sad, but funny) to watch.  With those two combined, I am glad my mom put a huge paper towel on my chest and let’s just say, it looked like a two year olds bib by the time I was done with my spaghetti. My mom and I just laughed and laughed.  I tease to myself and to Kent, I am a big adult baby. LOL It’s been a few weeks and I can finally move my hand with a little discomfort.  Yay!

Yesterday, I went to see a local doctor (not my current Lyme specialist in Kirkland, Washington). I have gone sooo far downhill that the Washington Dr.’s office asked me to find a local doctor to help watch my care since I am not well enough to travel to see him to test me and follow up on me continually. It was just too hard over the phone and going through email. By law in Utah, the Washington doctor cannot prescribe home health care for him being an out of state doctor. He can prescribe medicines and blood work just not home health care for me. That is the other reason I needed a local doctor. It has been a huge a bit depressing realization that I need home health care and hospice. A nurse told me don’t think of hospice as a death sentence think of it as you just need more care and that is what it is there for.

I have been feeling for the last month that I am going to die if I don’t do something now. It’s just a feeling you get when your sooo scared of whether you’re going to make it or not. I didn’t want to believe reality. I was hoping my thoughts were wrong and that we were all worrying too much. Well…….The doctor confirmed my dreaded thoughts with this visit. Confirmation hit me hard and I cried… She said if other people had gone through all that you have gone through they would not be here today. She said I can tell how strong you are and you’re will to live. She said this is so serious Emily. You are on survivor mode which is not going to last long, or at all. I told her, yeah I know.  I feel it and have known for a while. She said you need more serious medical treatment than what you have been given.  

Dr.: She asked, “Who takes care of you during the day”?

Me: “I sleep a lot. My friends help me get my lunch and meds during the day”. My mom helps too.

Dr.: She asked me, “Who takes care of your kids”?

Me: “Themselves. I can’t take care of them or do their hair or anything. They do it all. They are more independent though. (When I said that to her it sounded so lame, because I know that’s not how it should be). I WANT to be their mom and be there for them”.

Dr.: “Who takes care of your husband and he has extra jobs too”?

Me: Yes he does and he takes care of himself”.

 It makes me feel so guilty of our situation and not being able to help my kids, but it was a hard good realization of how bad it is and that I need lots of help.

Kent wrote this about my visit to family and friends: I want to add to the part about the 50 shots at the bottom for it hit me hard realizing another important lesson. Maybe all these lessons are why I am going through all this. I don’t know.

Just wanted to let everyone know how it went today at the Dr.’s office. First we met with Marietta Bergdorf, NMD. This was a couple hours long. We pretty much laid out in detail the last 7 years of Emily’s torture. After that she gave us roughly an idea of what it’s going to take to get Emily better. The Dr. stressed to Emily the seriousness of her condition and that it was only through Emily’s strength and shear will to live that has kept her alive. To sum it up she said we need to do more than just address one part of the disease; we also need to address Emily’s whole system. The major hurdles to overcome are her nervous system which is entirely out of control, the swelling in her joints, the malnutrition from her body’s inability to function and finally correct the damage that has been done from the past year of being bed ridden. To do this we need to know what direction to start so she ordered a whole plethora of labs. After taking blood for the labs they started her on a vitamin IV. Almost immediately she started feeling a little bit better. Then the torture began. Marietta had her lay down on the bed and began poking her body looking for places to inject. I am not sure of the solution she was using but its purpose is to help fix the pain she is experiencing in body. Once she found a nerve pathway she would inject it. So Emily got poked probably 50 times over her legs and back. She was not a happy camper. After that was done, they took her back to a comfy leather Lazy Boy that has a heated massage. Looks like I will soon be going to RC Willey to buy her a new Lazy Boy. She finished up her first IV bag and they brought in a second. This one contained the medicine. At this time Dr. Holland, MD paid Emily a visit and talked to her about pain management as well as home health care. He was very sympathetic and gentle. He also talked with her about physical therapy. By the time Emily was done we spent almost the whole day at the office. The bummer is that now we have to wait for all the labs to come back. We scheduled her next appointment for the 23rd. This is when we’ll hear from them the plan of attack.

Thank you everyone for all your prayers and kindness. The outpouring of love has truly been a blessing on our family. I can’t thank you enough, but at least I can take comfort in knowing that your blessings in heaven will be stacked high.

I want to add what we talked about when I got those 50 or more shots and I am not exaggerating the number either. I am a wimp. When you have lived with pain as part of your life for so long, you get so sick of it and you get to a breaking point of it’s ENOUGH. I HAVE HAD IT. Especially, with my nervous system being so out of wack. A simple scratch can send me screaming. I feel like screaming at the top of my lungs, no one touch my sensitive skin or come near me with a needle. LOL Dealing with a disease like this you don’t realize how a part of pain is in your life. You tend to think it is somewhat normal everyday part of life.

With these shots coming, I was freaking out at the thought of more needles in me, I started to fill up with anxiety.

Dr. Bergdorfs lesson: She asked me: “Emily, are you married to this pain”? I thought about it in my mind and thought well, I would rather deal with the pain I always have and not get all these shots over my whole body. Of course I didn’t tell her that. I thought for another second……..and thought wait a minute……..am I married to this pain……..?  Am I holding on to this pain…….? And my next thought was, heck no, I WANT A DIVORCE WITH THIS PAIN Dr. Bergdorf.  I want to let this pain go. I NEVER wanted it or LIKED IT! She said, “By giving you these shots you will get better. It has to be done”. As she looked over my body she said you have lost a lot of your muscles and gained fluid in its place. I can tell by the movement and by seeing it. She said my whole body was filled with fluid and that my liver is also swollen and enlarged.

I call this post, "Silver Lining", because hopefully we're close to results and answers.  Also, because this past year has been this dark cloud looming over us and I think we finally have a few rays of hope that are peeking through.

Now it’s a waiting period to see what the Dr.'s plan is. I have hope that she is the key doctor to help me. I see good results today from the treatment yesterday. I don’t dare say my good improvements, for fear of past experiences of hope of elation and then to be let down again if it doesn't last. I don’t want to jinx it. So I am going to wait it out and really see if this is true improvement.  Time will tell……..



  1. You worked commendably and I am particularly enthusiastic to analyze everything at alone place. I am truly flourishing concious. Additionally, therefore I everything considered check for new substance having latest thriving related tips, generally some Juicer Magazine objectives give stores of information on this regard. If you ever need to take a bit of your stack off, I might be a decent help to form for you on the referenced issue.