IV yesterday

I went in yesterday to get blood work.  I woke up yesterday morning thirsty.  That is never a good sign on nurse trying to find a vein day.   So I started drinking like a thirsty dog.  I arrived and did my ritual. (heating pad).  She called me over to look and look and look.  She must have looked for 20 minutes and then asked, "If you had a choice, which would you rather have --- the blood work or the IV."  Not really much a choice, but I told her I thought my LLMD really needed the blood work, so the blood work.

So, she looked some more.  I leaned over to try to get the blood pumping down my arm.  Then she said with little confidence that she was going to try this lil tiny one in my hand, on top of my hand. The one of the four veins I call "the baby IV spot."  Ya know cause most women that have babies, get an iv about there in their hand.

So she sticks and I wince.  She messes with it and tells me that I can stop squeezing (had a little ball to squeeze) that she got it.  She tries to draw the blood and nothing comes out.  Another lady comes over and hands her a syringe. She syringed out probably 6 ML's of blood which filled 1 and 1/2 vials of blood and then it stopped --- she made a quick judgement call to go ahead and start the IV and if it was enough, it was enough and if it wasn't then oh well.  She figured that if it wasn't enough, at least I got an IV out of that painful stick. And if it was enough, then I got both!

It's been a while since an IV site was sore the entire IV time.  I need to keep an eye on it to make sure there are no issues over the next few days.  It was bruised pretty badly last night, but this morning it looks better.  So whenever I get this particular IV (it's a Vitamin C plus other things bag), I feel like I smell.  terrible.  Some people say that I don't smell at all while others say they can smell what I'm talking about, but that it's not as bad as I think it is.  I don't know if those people are just being nice or if it really isn't as bad as I think it is.  Hopefully my friends would tell me if I really smelled bad.  Showering and bathing doesn't help.   I still smell afterwards (to me anyways).

I kind of joke now that there are no strangers just friends I haven't met yet.  Made two new friends yesterday.   Both fairly beginning in their stories of diagnosis.  I've been where they are.  They asked me if I was any better now than I was at the beginning.  In some ways, I'm the same.  In other ways, I'm much better.  Some symptoms I had at the beginning are gone.  I haven't had them in over four years.  While others are back after taking a 3 year hiatus.  But the way I view things has changed so in that way I'm much better.  It is what it is and I'm doing what I can to help myself.  I trust my doc completely and know that he & I work in a collaborative way. 

IV Day

I have a love hate relationship with IV days.  I hate having to get stuck (twice).  Today was a two stick kind of day.

However, I love the company.  I got there and met two new friends (everyone is a friend --- I know no strangers, just friends I haven't met yet).  I talked and talked the entire IV.  Usually I fall asleep around the 2 hour mark, but today --- because I haven't been able to be around any people over the last few weeks, I talked and talked and talked.  We all commiserated over our Lyme life.

I invited them all to the screening on Thursday.

I stayed and talked after my IV was through.  Today it took exactly 3 hours.  Usually it takes longer.  So I was pleased about that.  I know I was dehydrated because usually I have to go to the bathroom 3 or 4 times during my IV.  Today, I didn't have to go at all.  I only went once during the entire time I was there and that was about 30 minutes after I finished with the IV and I've only gone once since I've returned home.  That's what Zith does to me.

On another note ---

Tomorrow is going to be a crazy day.  First hanging out with Friend A, then going to the lawyers to sign for our house being sold and then hanging out with Friend B.  So pumped about tomorrow.  Then Thursday night, we have the screening for the documentary Under Our Skin.  Pumped about that too.  Very excited.  Then, Friday --- I start Mepron.  Scared, very scared.  Will live though.

Well, I'm tired.  I'm taking Zith and hitting the bed.

Possible Lyme Firsts For Me

I was diagnosed 5 years, 1 month and 4 days ago. I have tried many things including some conventional medicine and very unconventional medicine. I have had a PICC line. I have had many firsts.

Today I sat on my LLMD's loveseat and listened to him talk about the two well known LLMD's he has visited since my last visit with him in February. He talked about the homeopathic treatments and oral antibiotics that I have tried. We talked about how they made me feel. We talked about my symptoms, past and present. We talked about things he really hasn't done that many times and I thought about how often I jump on the train of things he hasn't really tried. I thought about how I really am my LLMD's little guinea pig. We have seen things that have worked (but aren't allowed anymore and that really makes me angry) and things that haven't worked at all.

My immediate plan is to give myself a 3 to 4 day break off of all the homeopathic medicines I have been taking to see if my body will improve. If it does improve, I will start over. I have three vials of homeopathic medicines. I will start with the first vial (targets Lyme). I will start off with 6 drops twice a day and increase everyday until I get to 20 to 25 drops twice a day. Then at this point, I'll start on the second vial that targets Bartonella. I will do the same thing with it and then lastly start the vial that targets Babesia. This could all change once my LLMD speaks with the creator of these vials. He wants to talk with her and find out her opinion on my case.

The past few times we have talked about oral antibiotics and I think my LLMD wants to try this route again seriously. My stomach churns just thinking about it. We think based on my symptoms that I have untreated Babesia. Until recently, Babesia had not even been on our radars. However, he learned a lot more about Babesia during his visits to New York with the other two LLMD's. So with this information comes a possibility of new firsts.

In order to target Babesia, there are several medicines that are used. I have heard about all three possibilities and my stomach turns just to think of it. The one my doctor would probably use (we talked about it at length) is known in the Lyme community as "yellow paint." The medical community calls it Mepron. The other antibiotic would be Zithromax. I have had Zithromax, but I have never endured the yellow paint.

In addition to this, he wants me to consider other lyme antibiotics as well. We're thinking about Ceftin, Rifampin ("orange urine") and then Grape Seed Extract. However, ultimately he wants to consider something I never thought I would hear him say.

IV ROCEPHIN.

I'm processing. I have a couple of phrases that I use almost daily. The first one is, "It is what it is." There is nothing I can do about it. I have Lyme and it is what it is. The second one is, "Go big or go home."

The following words scare me: Mepron, IV Rocephin, Rifampin, Ceftin, Grape See Extract. All of these would be firsts for me.

It is what it is.
Go big or go home.

Of course I have to wait for my LLMD to decide, but ultimately it is my decision. There are benefits to both treatment courses. Both treatment courses are expensive. Both treatment courses have their downfalls. I don't know what I want to do yet, but I do know that I trust my LLMD.

Here is the truth, the gut wrenching truth. I must admit I am scared, but I have learned a thing or two in the past five years. In order to see the beautiful rainbow, you must go through the rain. People always ask how I can stay so positive with everything I have gone through. I try not to let others see my weakness, my negativity. I am not 100% positive 100% of the time, but I do try to bring the joy to others. I say bring it. Bring the joy. Bring the pain. Bring the Lyme and Bring the rain.

Praise you in this storm: Casting Crowns.

Here we go again (IV's)

My IV lady is so good that she has never missed my veins --- UNTIL TODAY. She stuck in the needle and my vein blew. The pain didn't bother me, but the wave of emotions came over me and I cried. The second try on the right wrist was good, but it did cause pain. I'll probably wind up with bruises in both spots. One is already bruising and the other may or may not.

We'll see how it goes. I got my IV (2 hours and 45 minutes today) and I did 60 minutes of HBOT. I almost peed on myself in the machine because of all the fluids. Yeah, fun stuff.

P.S. I have a fever. :-(

Checking the "ole" Cortisol

Today is a big day for me. We're checking to see if my Cortisol level has improved after being on Cortef the last little while (4 full weeks and a couple of days). I still feel like I'm dragging in the morning and my body hurts. I used to roll out of bed get dressed and be wide awake. Now I drag. Here I am a full hour after I woke initially and my eye lids barely open. It took me 25 minutes to get out of bed after my eyes open. Typically if I wake before my alarm goes off, I roll out of bed immediately. If my alarm goes off before I wake, then I typically snooze one time (which is 8 minutes) and then roll out of bed. So I'm not sure how much good this Cortef has done. We'll see in a week or two. Blood is today and so is an IV.

The Adventures of the non-working Lymie

Oh my word. The past few days have seriously been filled to the brim. Kind of sad the only way I'll get to sit is by getting an IV and HBOT!

So a couple of months ago I told my husband, "I smell something funny in the car." It would come & go in waves. Sometimes it smelled terrible and sometimes it smelled kind of sweet. We were sure it was anti-freeze. Then the last time he changed my oil, he heard my car making this knocking sound. Sign number 2 something is wrong. He finally put all the puzzle pieces together and inspected my car and decided the water pump is ready to blow. So yesterday, I spent it calling Toyota - making appointment and driving it up there to be worked on today.

Also yesterday I spent the morning on the phone trying to fix another problem. They called to say my husband had an appointment today, well first it was ME that had the appointment today and secondly he doesn't have an appointment until the 27th. I explain this. They say, "no, it's him that has the appointment." Uh no, it's me. Then they say that he doesn't have an appt at all on the 27th. Good thing I have the paperwork shows that he does have an appt on the 27th. ;)

So today my appt is at 10:30. Well because my car is in the shop, Rob gets to drive me there at 8:30. So I get to mosey around the doc's office for 2 hours. good thing they love me! I brought DVD's out the wazoo and food too. Even a game of Uno if there's anyone that feels up to a game. Then afterwards, another Lymie will drive me to my car. Yeah I'll be at my LLMD's today forever. 8 to 4. IV & HBOT.

Maybe I'll get to rest tomorrow. My great friend and former boss from college is retiring tomorrow. I would love to go see her retire, but because of the 10 hour drive both ways I sent a letter instead. They will read it at her party. She will cry I'm sure of it.

Signing out cause I got to get dressed and head out for my really long day!

IV today

Today was my first IV since October 30, 2010! After my due diligence, my nurse got my IV started on the very first try. She made it look easy. Of course I started prepping at 6:15 this morning. I drank 24 oz in one hour and then slowed down after I started peeing like a Russian Mule.

In any case, I got to the IV room a little after 1:30 and the IV was inserted right about 2pm. That's pretty good timing. The other good timing was the time of the drip. Used to take 3 to 4 hours with an IV (now it would take about 2 hours on the picc line), but today ... it took maybe 2 hours and 5 minutes. I got a little nervous after the first hour and the line of fluids was still near the top. However, it was sped up and I started being saturated with the fluids!

I must say, I felt differently than I did one year ago. It was terrible. I felt like a horse sat on my chest and farted. Wait, did I just say that out loud? I felt like a horse sat on my chest. It was as if something heavy was sitting there and making me warm and heavy. It was almost a good feeling, but not if that makes sense. The only thing I can kind of compare it to is the way I feel after I've taken a dose of NyQuil. Warm and fuzzy - but with the IV, I felt terrible. I had to pee every 15 minutes, but tried not to b.c it is kind of pain to get up and go down the hall to pee. Plus everytime I walk, the drip slows down. Then on top of it, I had a headache (probably from the B Vitamins).

Now the interesting thing. I'm not sure why this is, but before when I'd get the IVs ... I'd have really florescent urine. It was bright yellow. Today, it was clear. Now I know I drank a lot of water and it should be clear normally, but with all the extra B vitamins in that bag ... one would think that my pee would be the bright yellow color. However, it was not. So I like to think I absorbed every gram of fluid and it's doing exactly what it's supposed to do (instead of me just peeing it out).

Well, it's time to get in bed. I'm exhausted. Hardly can keep my eyes open. Tomorrow I hit the Hyperbaric Chamber. That should be interesting. My first time.

Over And Out! (10/4 - or as I say .. what October 4th? - yes it's a small amount of irony that today is October 4th. means nothing ... 10/4 and yes, I'll look at this tomorrow and go ... what in the world happened to my writing? What was wrong with me ... it's the IV talking!