Pic line

Since this ordeal has started I've had many people asking questions. At this time in my life I really think that the thing that helps is to share the experience so I'm sharing and with all the details. Hopefully someone else won't wait 9+ years to get to the bottom of their own symptoms!


Medication bulb. It's actually a balloon that deflates as treatment is administered. Takes about an hour to run.


Pic line and dressing


pic line and wrapping when not in use.


Actual piece of line. They gave it to me to show my kids. I was like..."gee thanks! I really wanted to see that!" LOL!

Treatment started

Treatment started yesterday. I drove to Arlington Memorial and cried nearly the whole way there because I was scared and alone. The regiistration process was hideous. What should have been a 10 minute sign in took over an hour. I did not make it up to do the pic line until 10:20.

The pic line itself wasn't too bad. It did hurt and the threading of the line did feel strange/uncomfortable. However, it wasn't unbearable and if the treatments work then it will have been worth it.

What should have been a one hour procedure from start to finish turned into 5 hours because of xrays having to be retaken and just waiting. I went in at 9 and got out at 2. David ended up having to leave work to go get kids from school and stuff.

After I got out of hospital I had to drive to Dr. McClean's office for the 1st treatment. Everyone at that office is amazing and if you ever find yourself in need of an infectious disease doctor I'd highly recommend you use them. Dawn and the pharmacist went over the treatment with me and hooked me up to the 1st one. I then sat in the lobby among patients while I it finished. The two most common side effects are nausea and headaches. I got both. Also for the four or five days you are even more tired. So you feel worse before you start to feel better. I definately do feel worse at the moment but am so hoping to get over the hump and feel good again.

I will do these treatments for 21 days and see if they are working or have worked. Best case scenario is that I'll do this for 21 days and it's over. Worse case scenario is that there will be improvement but not enough and the treatments will continue and can continue for up to 6 mths. We're praying that 21 days is all I need and that it works!

I really had a pity party yesterday because I was alone through the whole thing. David has to work. My family lives hours away. Not many cyberspaceless friends(just hard to have friends with our lifestyel). Blah, blah, blah. However, I do have a friend in Jesus and I felt Him with me. He was there when I called. It was a great and much needed realization for me yesterday.

I love all of you and thanks for you're prayers! Please keep them coming.

10/27/09

Feeling pretty good this morning.  Can't believe how rare of an occurance that is.  I'm trying to get some things done while I have some energy.  Never know how long it will last.  Hopiing it'll last long enough for me to make a dent in all the things I'm behind on.  I see Dr. Troung in the morning.  Just a follow up.  I've never been to the doctor so much in my life.  I want to get well. 

10/25/09

I didn't sleep well at all last night.  I tried but it just wasn't in me.  Right now I am completely exhausted.  We went to church this morning and I made some lunch.  I mostly used the crock pot and leftovers out of the fridge for our lunch so there was nothing taxing about it. 

On Friday I had blood work done.  Five vials.  The guy was laughing at me because he just kept taking vials out and laying them on the counter.  I was like, "how many of those are you going to use?!?!?"  He did a good job and I'm guessing blood draws are something I need to get used to but Man, I hate blood draws on me or anyone else. 

I have two appt's this week with doctors.  Just follow ups basically. 

Oct. 22 2009

This has been one of those really bad days.  I'm forcing myself to move.  I made a list of everything I need to do and there is no way I'm going to get it all done.  I've watched my diet today, and made sure I ate protein in both meals.  It just pretty much stinks.  I'm a 38 year old woman and I have to force myself to move and do.  :(  I have to.  I have too many people depending on me.  I guess it's a good thing they do need me or I'd lack the motivation or determination to fight through as much as I do.

I find myself torn between thankfullness that we finally know what is going on and can treat it to wondering if I can stand the treatment.  I have my moments of wanting to stand on the roof top and scream at all my critics.  All those people who dogged me and beat me down becasue they didn't understand what was going on with me.  All those people who think I am lazy or have criticized my house keeping abilities.  Everyone that fussed at me for my forgetfulness or being unorganized.  I AM NOT LAZY or CRAZY!  So THERE!  I'm also so very thankful though for the people in my life that have been patient with me and who have attempted to help me.  You have been my lifeline.

I see Dr. Troung tomorrow morning.  It's just a follow up appt.  We won't know more about how treatment will progress until the results from blood work.     

I have CFS

This blog is intended to help me record my diagnosis, treatment, and living with Chronic Fatigue Syndrome.  The story begins in 2000 around the time I became pregnant with my daughter.  I became very ill with cold type symptoms and extreme fatigue.  I went to my OB and she prescribed claritin and told me I had a bad cold.  I didn't improve.  It got harder and harder to do the things I needed to.  I literally had to force myself to do things.  I could barely move, slept a lot, and didn't function well at all.  I forgot things, started missing church(which was very out of character), didn't manage my household well, gained a ton of weight, and just overall wasn't functioning in life as I had once done.  This did not improve.  Through the years I have approached my doctor about how I never feel good, etc. and he'd tell me that the way I felt was "normal" for a person with my stress load.  I've been put on several antidepressants and none of them helped.  They'd help a little bit but not significantly.  Finally after nearly 9 years of this I listened to a friend and made an appt with a different doctor.  The doctor she recommended wasn't taking patients but another one in the group was and I made an appt with them.  Dr. Troung was unlike any doctor I had ever seen.  She took her time with me and listened.  She ordered some tests and I soon got the results and was referred to an infectious disease doctor.  I saw the infectious disease doctor yesterday who is doing further testing but has diagnosed me with CFS.  The reason being that I had two viruses in 2000; cmv and mono.  Both of which can cause CFS.  Treatment options at this time are IV treatments with antivirals, diet changes, antidepressants, and supplements.  For the IV treatments I have to have a pic line inserted and will infuse antivirals 3 times a day for 21 days.  More than likely I will have to do two 21 day infusions but may have to do up to 6 mths depending on the findings with the additonal test results.

There is so much I do not know, and so much to learn still.  I'm hugely relieved that we know what is wrong and there is a possibility I can feel better some day.  The other part of me is a huge chicken and hates doctors, needles, etc.  If Hannah can do it though, surely I can. LOL!

This blog will be full of my highly unorganized ramblings unfortuantely so if you read this don't hold any of what I say against me. :)  It won't be anywhere near entertainment reading. LOL!