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.
Showing posts with label PICC. Show all posts
Showing posts with label PICC. Show all posts
Thursday, April 5, 2012
Sunday, May 23, 2010
Looking backwards
I have been so busy looking at the lab results since Saturday morning that the numbers started to blur. Since I'm a Number's Girl, I decided to get organized and look at all the numbers. So I pulled a pile (we're talking HUGE pile) of papers and started sorting them. Doctors Receipts, Lab Reports, Insurance Papers, Symptom Papers, etc. I had already sorted some a little over a year ago into two notebooks. So I punched holes into the latest papers and put them in the notebook.
One of the tabs I have is "My Symptoms." Now really I don't have a whole lot in that section because I keep everything on my computer, but I did have a few papers printed out. However, there was one page that caught my eye. It was August & September 2008. It all started on August 18th. I had a simple PICC Line bandage change. By the next morning, there was pus all under my bandage and the bandage came up. I had only had my PICC line for a month. I was anxious that I was getting an infection already. I went in for another bandage change on the 19th.
I wrote, "On the 26th, I got lost going home. I couldn't think straight. I was extremely emotional and cried often frustrated with my limitations." The next day my blisters were healing and dried out with the new bandage regiment. My arm was great for a few days. I thought I was in the clear. On September 2nd, I had my IV Glutathione and a dressing change. My arm looked wonderful. All of the blisters had dried out.
I wrote, "Dead skin easily came right off as M cleaned the area with alcohol. Noticed right away upon arriving home that it was itching. Later that evening it started hurting and was very itchy." It was at that time that I tried to go to sleep, but woke up in pain from the itching. I attempted Benedryl, heat and ice to stop the itching. However, it just wouldn't stop. I begged my husband to change the dressing at one in the morning. I got about 2 hours of sleep and when I woke up my dressing was covered in pus. I kept an eye on the area, but by 9:30 there was moisture under the dressing. I had to rush to the office for a dressing change.
By the time I got home (only 30 minutes later), it was already leaking. I went back later for another test and got a third dressing change for the day. I remember that day. I honestly thought I might die from an infection. I thought I was about to lose my picc line after only having it for a little over a month. The next day I went back because my gauze was wet again and an appointment was scheduled for the hospital for hte following day. I just knew that September 5th would be the day they would pull my PICC. I just knew that I would no longer get any treatments. However, the doctor allowed me to keep it in and gave me instructions on cleaning and a new kind of dressing for my picc line.
***
This is why I don't want to look backwards. I had so much trouble with my PICC line. Allergies get more severe with time. If I was that "allergic" to the solutions then, what makes me think that this time would be easier? I know I'm jumping the gun, but it was in January when I was told if certain lab works didn't improve significantly that I would need IV treatments. Those numbers didn't improve hardly at all. I'm a little worried, but trying not to let those worries get the best of me.
One of the tabs I have is "My Symptoms." Now really I don't have a whole lot in that section because I keep everything on my computer, but I did have a few papers printed out. However, there was one page that caught my eye. It was August & September 2008. It all started on August 18th. I had a simple PICC Line bandage change. By the next morning, there was pus all under my bandage and the bandage came up. I had only had my PICC line for a month. I was anxious that I was getting an infection already. I went in for another bandage change on the 19th.
I wrote, "On the 26th, I got lost going home. I couldn't think straight. I was extremely emotional and cried often frustrated with my limitations." The next day my blisters were healing and dried out with the new bandage regiment. My arm was great for a few days. I thought I was in the clear. On September 2nd, I had my IV Glutathione and a dressing change. My arm looked wonderful. All of the blisters had dried out.
I wrote, "Dead skin easily came right off as M cleaned the area with alcohol. Noticed right away upon arriving home that it was itching. Later that evening it started hurting and was very itchy." It was at that time that I tried to go to sleep, but woke up in pain from the itching. I attempted Benedryl, heat and ice to stop the itching. However, it just wouldn't stop. I begged my husband to change the dressing at one in the morning. I got about 2 hours of sleep and when I woke up my dressing was covered in pus. I kept an eye on the area, but by 9:30 there was moisture under the dressing. I had to rush to the office for a dressing change.
By the time I got home (only 30 minutes later), it was already leaking. I went back later for another test and got a third dressing change for the day. I remember that day. I honestly thought I might die from an infection. I thought I was about to lose my picc line after only having it for a little over a month. The next day I went back because my gauze was wet again and an appointment was scheduled for the hospital for hte following day. I just knew that September 5th would be the day they would pull my PICC. I just knew that I would no longer get any treatments. However, the doctor allowed me to keep it in and gave me instructions on cleaning and a new kind of dressing for my picc line.
***
This is why I don't want to look backwards. I had so much trouble with my PICC line. Allergies get more severe with time. If I was that "allergic" to the solutions then, what makes me think that this time would be easier? I know I'm jumping the gun, but it was in January when I was told if certain lab works didn't improve significantly that I would need IV treatments. Those numbers didn't improve hardly at all. I'm a little worried, but trying not to let those worries get the best of me.
Sunday, February 7, 2010
I love that
One year ago today my PICC line was pulled! It means for the last 365 days I have not been limited by the PICC. I have been able to lift what I want to lift, go outside without covering completely up when it's snowing or raining, take an unlimited shower, go bowling, sleep without pain and so many things! I love that it assisted me in getting well. I love that I didn't have to get stuck with a needle for every blood draw or IV. I don't necessarily love getting stuck now, but I do love that I save at least 400 dollars a month (sometimes it was closer to 700 dollars) in dressing changes! :o)
Feburary 7, 2009 - before
February 7, 2009 - afterwards
Feburary 7, 2009 - before
February 7, 2009 - afterwards
Saturday, February 6, 2010
Interupting I love series
for an I hate moment:
PICC scar closer to the edge of the shirt and the two bumps out closer to the crook of my arm
Bumps like those are getting on my ever lasting nerve!
I thought they were improving. Last month, I had (as far as I know) three total. All at the beginning of the month. So I went almost 25 days without one (as far as I know). Reason I say (as far as I know) is that unless they wake me up in the middle of the night, I am not aware whether they are there or not. Also if they show up in the middle of the day and don't itch, I may not realize they are there (especially since I typically wear long sleeved shirts and don't see the area).
So far this month, I've had 8. EIGHT! Eight bumps in 6 days! I had one on the 2nd, FOUR on the 3rd and THREE tonight! I woke up with an itch and knew just by feeling my arm that it was huge. I always reach there and feel for the spot and then feel around the area to find out whether there is an actual bump before turning on the light to verify.
There is no rhyme or reason for the bumps. There is no particular fabric I am wearing to cause it or the time of day. Some happen in the morning, some in the afternoon and some very late at night. Some go away after 30 minutes while others last hours. (typically though they happen during hours my doctor's office is not open or last short enough when they are open that I can't get there in time to show off these bumps)
It's extremely difficult to take a photo of the bumps. You can see the bump, but this is the best photograph I could capture. Close to the edge of the shirt is my picc line scar .. closer to the cook of my arm is the massive bump. If you see it in person, you would see the huge bump plus two smaller ones near it. My smart doctor has NEVER seen anything like it. Leave it to me to be unique in this way.
Your regularly I Love Series will return later today! Crazy picc bumps. I hate em!
PICC scar closer to the edge of the shirt and the two bumps out closer to the crook of my arm
Bumps like those are getting on my ever lasting nerve!
I thought they were improving. Last month, I had (as far as I know) three total. All at the beginning of the month. So I went almost 25 days without one (as far as I know). Reason I say (as far as I know) is that unless they wake me up in the middle of the night, I am not aware whether they are there or not. Also if they show up in the middle of the day and don't itch, I may not realize they are there (especially since I typically wear long sleeved shirts and don't see the area).
So far this month, I've had 8. EIGHT! Eight bumps in 6 days! I had one on the 2nd, FOUR on the 3rd and THREE tonight! I woke up with an itch and knew just by feeling my arm that it was huge. I always reach there and feel for the spot and then feel around the area to find out whether there is an actual bump before turning on the light to verify.
There is no rhyme or reason for the bumps. There is no particular fabric I am wearing to cause it or the time of day. Some happen in the morning, some in the afternoon and some very late at night. Some go away after 30 minutes while others last hours. (typically though they happen during hours my doctor's office is not open or last short enough when they are open that I can't get there in time to show off these bumps)
It's extremely difficult to take a photo of the bumps. You can see the bump, but this is the best photograph I could capture. Close to the edge of the shirt is my picc line scar .. closer to the cook of my arm is the massive bump. If you see it in person, you would see the huge bump plus two smaller ones near it. My smart doctor has NEVER seen anything like it. Leave it to me to be unique in this way.
Your regularly I Love Series will return later today! Crazy picc bumps. I hate em!
Tuesday, October 6, 2009
Bronchitis Update
I'm still coughing up a storm. I stopped by my LLMD's office this afternoon. After speaking with my nurse, I plunkered in my "favorite chair." She plunkered down right in front of me with needle in hand. After two tries, she got the IV inserted and the drip began. First IV I've had since February and the first time I've had an IV insertion since July of 08.
After the 2 and 1/2 hours of IV (which is a nutritional IV consisting of 50 grams of Vitamin C plus some other nutrients), my nurse informed me that my LLMD does want me to go on the antibiotic. So ... here we go again. Hopefully this time ... ONE antibiotic for TEN days (instead of FOUR antibiotics for over a YEAR).
All of my other s ymptoms are pretty much gone except the horrible cough. It's been a while since I've been a fly on the wall at my LLMD's office. I forgot how very busy my LLMD is. He was busier than an one legged man in a butt kicking contest. He was running from patient to patient trying to hear what the office staff and nurses were telling him about other patients in between visits.
Today was a crazy day. I know it's about to get crazier for him. I'm sure he'll get patients that would have gone to Dr. J in South Carolina, but don't want to wait for his transition to DC or even drive to DC.
I see him on Saturday for my follow up. Hopefully I'm feeling a lot better. I got my test results today. I am not looking forward to the appointment either b.c some things didn't look good.
After the 2 and 1/2 hours of IV (which is a nutritional IV consisting of 50 grams of Vitamin C plus some other nutrients), my nurse informed me that my LLMD does want me to go on the antibiotic. So ... here we go again. Hopefully this time ... ONE antibiotic for TEN days (instead of FOUR antibiotics for over a YEAR).
All of my other s ymptoms are pretty much gone except the horrible cough. It's been a while since I've been a fly on the wall at my LLMD's office. I forgot how very busy my LLMD is. He was busier than an one legged man in a butt kicking contest. He was running from patient to patient trying to hear what the office staff and nurses were telling him about other patients in between visits.
Today was a crazy day. I know it's about to get crazier for him. I'm sure he'll get patients that would have gone to Dr. J in South Carolina, but don't want to wait for his transition to DC or even drive to DC.
I see him on Saturday for my follow up. Hopefully I'm feeling a lot better. I got my test results today. I am not looking forward to the appointment either b.c some things didn't look good.
Wednesday, May 6, 2009
PICC Lines
Have any of you had this problem post picc line pulling? (how's that for alliteration?) I get these bumps in about the same place quite a bit. I have a feeling they come up every night, but I'm asleep and don't notice. I had 12 in April (on one day I had 3 bumps pop up at the same time around the site and on another it was 2 bumps). I know I've had one pop up this month. I'm not sure how many times it happened after it was pulled in February and March because I didn't keep an eye on it really, but I do know it happened at least 10 times.
I'll be heading to my LLMD next week with photos in hand, but what happens is that a small little bump shows and then it gets larger to about the size in this photo. Then it disappears over the next few hours. I thought I'd see if any of you guys (all Lymies with PICCs or anyone else wiht PICCs) might have an idea or two about what might be going on.
It doesn't hurt, it doesn't really itch, but it is quite annoying.
Tuesday, March 24, 2009
Post Picc Pics!
1. Take a nice long shower without a picc line cover *check*
2. Find a hot tub somewhere and enjoy it. *check*
3. Swim in a pool. *check*
4. Go Bowling. (soon?) :( Haven't done it yet, but hopefully have a trip planned with a friend or two (or 10) soon.
5. Walk on the beach *check*
6. Go to a Winterguard show! *check*
7. Spin a rifle. (Okay maybe not .. but it would be fun.) (uh yeah haven't done it and probably won't be doing it anytime soon, but do taking pictures of these count????)
Rifles at Fort Macon <>
8. Hug my friends without fear of being hurt (I seriously need to get better pics of this)
9. Sleep on my right side without hurting
What??? that's not me sleeping in my bed? Could have fooled me!?!?! It was one of my favorite photos that my husband took with our SLR camera. But yes I am sleeping on my right side again without pain.
2. Find a hot tub somewhere and enjoy it. *check*
3. Swim in a pool. *check*
4. Go Bowling. (soon?) :( Haven't done it yet, but hopefully have a trip planned with a friend or two (or 10) soon.
5. Walk on the beach *check*
6. Go to a Winterguard show! *check*
7. Spin a rifle. (Okay maybe not .. but it would be fun.) (uh yeah haven't done it and probably won't be doing it anytime soon, but do taking pictures of these count????)
Rifles at Fort Macon <>
8. Hug my friends without fear of being hurt (I seriously need to get better pics of this)
9. Sleep on my right side without hurting
What??? that's not me sleeping in my bed? Could have fooled me!?!?! It was one of my favorite photos that my husband took with our SLR camera. But yes I am sleeping on my right side again without pain.
Saturday, March 7, 2009
It's been one month
This message is going to be discombobulated. I'm just writing to write. I am not editing therefore I apologize in advance for any run-on sentences or misspellings. :) (Missy IGNORE THEM). :) Also sometimes my head goes faster than my head so I might start a sentence and stop it mid sentence. Uh sorry about that. I think it in my head and even think I've typed it, but yeah .. I haven't.
On to the regularly scheduled post:
It has been one month today that my PICC Line was removed. It's been one month as of yesterday that I had a treatment for Lyme Disease (minus supplements that I've been on the last week). It's been one month and two days since I last had an IV for heavy metal poisoning. It's been one month and one day since I got a saline/heparin injection. It's been one month since I've seen my doctor.
ONE MONTH!!!! One WHOLE month! I have been up to my doctors in the last month a whopping 4 times.
February 7 ~ get picc line removed & appointment
February 24 ~ MSA testing
February 25 ~ blood work.
Then on March 3rd to bring balloons to the office for a a miracle two years of treatment. (though it was on March 1st .. March 3rd was the first day they were open.
What did I miss you ask? Well, I would have been to get my picc line changed on:
11th, 18th, 25th, March 4th. There would have been some sort of "emergency" too. I probably would have had 1 treatment for Lyme and 1 treatment for Heavy Metals. Those would have more than likely been done on the same day as a dressing change, but sometimes that couldn't be arranged so add in 2 more days. So far that would have been 7 days at the doctor's office in addition to the 7th appointment, 24th MSA, 25th blood work. So make that 9 days at the doctor's office in a month. 9 days out of 20 days they are open. OMG. How grateful am I that I was only there for 4 days of the 20? Words can not explain. That means also that I was minus 5 days of pain b/c those picc line changes are not fun. I had one day of pain instead. The blood draw was not fun and I still have a bruise 10 days later from where they took blood.
How am I doing?
Well, I am exhausted. I think it is mainly thanks to my friend PMS, but I am exhausted none-the-less. I've taken more naps in the last week than I have in the last 4 months. However, I do feel rested when I finally do wake up, which is really good. I also think that part of my problem is the pollenating*bastards* trees that are starting to pop out with little spring buds.
On a senator letter front: I had two letters returned to sender. The address is not correct. So I think I will send an email to these senators. I also received a list of the other representatives of congress. So I suppose another letter will have to be written (er make that 170 letters or so), printed off, stuffed into envelopes, addressed (which is quite a task of it's own), stamped, sealed, and sent off. Quite an undertaking for someone that even two years ago could barely write her own name .. much less coordinate such a process.
On to the regularly scheduled post:
It has been one month today that my PICC Line was removed. It's been one month as of yesterday that I had a treatment for Lyme Disease (minus supplements that I've been on the last week). It's been one month and two days since I last had an IV for heavy metal poisoning. It's been one month and one day since I got a saline/heparin injection. It's been one month since I've seen my doctor.
ONE MONTH!!!! One WHOLE month! I have been up to my doctors in the last month a whopping 4 times.
February 7 ~ get picc line removed & appointment
February 24 ~ MSA testing
February 25 ~ blood work.
Then on March 3rd to bring balloons to the office for a a miracle two years of treatment. (though it was on March 1st .. March 3rd was the first day they were open.
What did I miss you ask? Well, I would have been to get my picc line changed on:
11th, 18th, 25th, March 4th. There would have been some sort of "emergency" too. I probably would have had 1 treatment for Lyme and 1 treatment for Heavy Metals. Those would have more than likely been done on the same day as a dressing change, but sometimes that couldn't be arranged so add in 2 more days. So far that would have been 7 days at the doctor's office in addition to the 7th appointment, 24th MSA, 25th blood work. So make that 9 days at the doctor's office in a month. 9 days out of 20 days they are open. OMG. How grateful am I that I was only there for 4 days of the 20? Words can not explain. That means also that I was minus 5 days of pain b/c those picc line changes are not fun. I had one day of pain instead. The blood draw was not fun and I still have a bruise 10 days later from where they took blood.
How am I doing?
Well, I am exhausted. I think it is mainly thanks to my friend PMS, but I am exhausted none-the-less. I've taken more naps in the last week than I have in the last 4 months. However, I do feel rested when I finally do wake up, which is really good. I also think that part of my problem is the pollenating
On a senator letter front: I had two letters returned to sender. The address is not correct. So I think I will send an email to these senators. I also received a list of the other representatives of congress. So I suppose another letter will have to be written (er make that 170 letters or so), printed off, stuffed into envelopes, addressed (which is quite a task of it's own), stamped, sealed, and sent off. Quite an undertaking for someone that even two years ago could barely write her own name .. much less coordinate such a process.
Saturday, February 21, 2009
Two week post picc
So it has now been a whopping two weeks since my PICC line was pulled. That begs the question: How am I feeling? Since it was pulled I have felt a range of emotions. Fear, Joy, Happiness, Emptiness, Anxiety, Thrilled (to not have to have an umbrella for light rain). So many words can be used to describe the last two weeks.
Joy: It has been simply wonderful to be able to take a shower or bath whenever I want without having to run to my husband first for him to put on the Dry Pro PICC Line Cover. In fact, there are many days when I took two baths and showers just because I could. It has been Joyful to be able to hug my friends without fear of being hurt. It has been wonderful to touch my left ear with my right hand over my head. Now why on earth I'd want to do that .. I don't know, but the point is that I CAN!
Happiness: I am happy that I don't have to taste Saline & Heparin or feel the fluttery chest feeling when I am getting an infusion. I've not made the opportunity to spend the night somewhere, but if I did ... I wouldn't have to worry about lugging gloves, alcohol swabs & Heparin and finding a compassionate person that would be willing to do my nightly Heparin shots in the PICC Line.
Fear: What if I have a set back to which it was a mistake that it was pulled. What if it doesn't heal properly? What if ... Yes there were tons of What if's, but is it healing properly .. yes it is. In fact, the hole looks really really good. It almost looks as if there was never anything there to begin with. My biggest fear is the set-back one though. AND ... my blood work on Tuesday. For the first time since May, I'll have a needle going into my veins. I am scared. Go ahead call me a scaredy cat, but I had a tube in which they could draw blood any time they wanted. I never had to worry about passing out or pain b/c the blood draws never hurt. ON Tuesday .. it will hurt. I may pass out. :(
Emptiness: How can I express this ... My nightly ritual has become routine. It feels empty not to do the things I needed to sustain life. I feel empty not having a tube in my arm. It feels weird not having to restrict my movement or my weight lifting capacity. I was "pushing" something on the floor with my feet and arms the other day until I realized I could actually lift it up and not "fear" that I would pull out the tube. It felt weird .. and empty.
Anxiety: Goes hand and hand with fear. Basically I have severe anxiety about future blood draws/IV's and about back sliding. Also about a potential future PICC Line. What if .. there are those two little words that give anxiety every time ... What if I need another one in the future?
Mainly though ... I am THRILLED. I am thrilled to be able to do all the things I haven't been able to do. It is thrilling to be able to walk out in the rain without fear that I will hurt my PICC Line or even worse my body. I am thrilled that I can go hang out with people without fear that they will hit my arm and hurt my line ... I am thrilled to be able to go bowling if I want (and I will .. just haven't done it yet) and walk on the beach without fear and swim & hottubbing and .. I could go on and on with all the reasons I am thrilled that it is gone.
But, How am I doing?
I am doing okay. I had a rough couple of days last week that really scared me. On Sunday I woke up dizzy and miserable. I felt like I was in someone else's body from a year ago. I had a headache and my muscle twitches were off the hook. My "fear" was becoming reality. I was taking a step back. I woke up throwing up in my mouth what tasted like acid and it scared me. After taking a deep breath (or four), I went back to sleep. Monday was not good either. I felt very much unconnected to my body. I felt as if I wasn't really there. My eyes would glaze over and I'd forget where I was. I knew that if I felt like this by Wednesday I would have to call my doctor. Tuesday I woke up feeling a bit better, but I was still feeling dizzy and muscle twitching. By Wednesday this disconnection feeling was pretty much gone. So now here I am with pretty much the twitches. I haven't had another spell of throwing up acid and my headache isn't ther either.
So now .. I am doing okay. I go back on Tuesday for another MSA. THis will help determine which supplements I need to be on. I am almost certain I will restart Vitamin D, a Borrelia Series (a new one for me), OSR (a new one for me), Fiber stuff (old one for me), VER (old one for me), Adrenal Pep (old one for me) and a bunch of others including one for yeast. I haven't had a single supplement (except the Fiber stuff) in two whole weeks. What a weird feeling: a good feeling, but weird one none-the-less.
An update on me!
Joy: It has been simply wonderful to be able to take a shower or bath whenever I want without having to run to my husband first for him to put on the Dry Pro PICC Line Cover. In fact, there are many days when I took two baths and showers just because I could. It has been Joyful to be able to hug my friends without fear of being hurt. It has been wonderful to touch my left ear with my right hand over my head. Now why on earth I'd want to do that .. I don't know, but the point is that I CAN!
Happiness: I am happy that I don't have to taste Saline & Heparin or feel the fluttery chest feeling when I am getting an infusion. I've not made the opportunity to spend the night somewhere, but if I did ... I wouldn't have to worry about lugging gloves, alcohol swabs & Heparin and finding a compassionate person that would be willing to do my nightly Heparin shots in the PICC Line.
Fear: What if I have a set back to which it was a mistake that it was pulled. What if it doesn't heal properly? What if ... Yes there were tons of What if's, but is it healing properly .. yes it is. In fact, the hole looks really really good. It almost looks as if there was never anything there to begin with. My biggest fear is the set-back one though. AND ... my blood work on Tuesday. For the first time since May, I'll have a needle going into my veins. I am scared. Go ahead call me a scaredy cat, but I had a tube in which they could draw blood any time they wanted. I never had to worry about passing out or pain b/c the blood draws never hurt. ON Tuesday .. it will hurt. I may pass out. :(
Emptiness: How can I express this ... My nightly ritual has become routine. It feels empty not to do the things I needed to sustain life. I feel empty not having a tube in my arm. It feels weird not having to restrict my movement or my weight lifting capacity. I was "pushing" something on the floor with my feet and arms the other day until I realized I could actually lift it up and not "fear" that I would pull out the tube. It felt weird .. and empty.
Anxiety: Goes hand and hand with fear. Basically I have severe anxiety about future blood draws/IV's and about back sliding. Also about a potential future PICC Line. What if .. there are those two little words that give anxiety every time ... What if I need another one in the future?
Mainly though ... I am THRILLED. I am thrilled to be able to do all the things I haven't been able to do. It is thrilling to be able to walk out in the rain without fear that I will hurt my PICC Line or even worse my body. I am thrilled that I can go hang out with people without fear that they will hit my arm and hurt my line ... I am thrilled to be able to go bowling if I want (and I will .. just haven't done it yet) and walk on the beach without fear and swim & hottubbing and .. I could go on and on with all the reasons I am thrilled that it is gone.
But, How am I doing?
I am doing okay. I had a rough couple of days last week that really scared me. On Sunday I woke up dizzy and miserable. I felt like I was in someone else's body from a year ago. I had a headache and my muscle twitches were off the hook. My "fear" was becoming reality. I was taking a step back. I woke up throwing up in my mouth what tasted like acid and it scared me. After taking a deep breath (or four), I went back to sleep. Monday was not good either. I felt very much unconnected to my body. I felt as if I wasn't really there. My eyes would glaze over and I'd forget where I was. I knew that if I felt like this by Wednesday I would have to call my doctor. Tuesday I woke up feeling a bit better, but I was still feeling dizzy and muscle twitching. By Wednesday this disconnection feeling was pretty much gone. So now here I am with pretty much the twitches. I haven't had another spell of throwing up acid and my headache isn't ther either.
So now .. I am doing okay. I go back on Tuesday for another MSA. THis will help determine which supplements I need to be on. I am almost certain I will restart Vitamin D, a Borrelia Series (a new one for me), OSR (a new one for me), Fiber stuff (old one for me), VER (old one for me), Adrenal Pep (old one for me) and a bunch of others including one for yeast. I haven't had a single supplement (except the Fiber stuff) in two whole weeks. What a weird feeling: a good feeling, but weird one none-the-less.
An update on me!
Saturday, February 14, 2009
September Lyme Posts
I wrote this a while ago. It was never completed, but it posted today anyways. Oh well. Here it not in it's entirety.
The First Post: What my blog is about!
Next I wrote several blogs on Tick Borne Illnesses. Here they are:
Tick Borne Part 1
Tick Borne Part 2
Tick Borne Part 3
I also wrote some on my diagnoses and therapy.
My diagnosis
My therapy
A day in the life of my treatment
I talked about my PICC Line in September 2008.
PICC Part 1
PICC Part 2
"Anniversary with PICC"
Problems with the PICC
PICC line story at the hospital
More on my PICC
I also had some "itching" and "rashes" in September of 2008
Itching
Why am I itching?
I saw my blood under a really cool microscope.
Bradford Microscope
I talked about my emotional roller coaster
Mood Swings
And also saw the amazing documentary:
Under Our Skin
A review of Under Our Skin
The First Post: What my blog is about!
Next I wrote several blogs on Tick Borne Illnesses. Here they are:
Tick Borne Part 1
Tick Borne Part 2
Tick Borne Part 3
I also wrote some on my diagnoses and therapy.
My diagnosis
My therapy
A day in the life of my treatment
I talked about my PICC Line in September 2008.
PICC Part 1
PICC Part 2
"Anniversary with PICC"
Problems with the PICC
PICC line story at the hospital
More on my PICC
I also had some "itching" and "rashes" in September of 2008
Itching
Why am I itching?
I saw my blood under a really cool microscope.
Bradford Microscope
I talked about my emotional roller coaster
Mood Swings
And also saw the amazing documentary:
Under Our Skin
A review of Under Our Skin
Tuesday, February 10, 2009
My LLMD Appt
I saw my Dr on February 7, 2009. This is the appointment in which my PICC line was pulled. I found out lots of things that are disheartening, but also left with hope as always.
The reason I have not wanted to post exactly what I am getting on this blog or any other public forum is for political reasons. Some doctors do not believe that Chronic Lyme exists. Some doctors do. Some doctors that do believe in Chronic Lyme believe in strictly Antibiotic treatments and others believe that there are some alternate methods of treatment. I have a doctor that believes in BOTH methods. The more he learns about Lyme & treatment the more he believes in an alternative path of treatment.
In September, I had a live blood analysis done. I have never asked about other patients that have had this done. However in my appointment on Saturday, my doctor mentioned that the doctor that does this Live Blood Cell Microscope now comes to his office every other month. He now clears his day for these appointments so he can see exactly what is going on with his patient's blood cells.
He said in January there were 5 patients that had this Live Cell done. Three of those patients used the treatment like I used. This Experimental Alternative treatment. Two of the patients used regular antibiotics. Apparently two months prior, they both had about the same amount of borrelia in all three forms of bacterial (L shape, spiral shape & cyst shape). Well in January (IF I am understand correctly) .. the 3 patients that did the alternative method ... there were VERY FEW Cyst forms and their spiral loads had decreased dramatically. The two patients that had done antibiotic therapy .... had LOTS OF CYSTS and lots of the other types too.
What does this have to do with MY appointment you ask? Well, I just found out that my doctor is having difficulty getting the alternative therapy. The doctor that invented this along with another physician in Texas are in trouble with the medical board in Texas because they have been using this treatment. The doctor that invented this & the doctor in Texas have had very high success rates with this treatment. I do not know the whole break down of the situation, but either way it is making it difficult for doctors to get this treatment.
As it was, the compouding pharmacy that made this drug wouldn't send it to North Carolina. So my doctor had to order it through another doctor who would sent it to the few patients he had on this protocol. Well now that doctor has closed his office making it impossible for my doctor to get his hands on these treatments.
THIS TREATMENT HAS SAVED MY LIFE!!!!! I am so upset that not only will I not be able to finish this treatment, but that others that have just begun this treatment won't have access to it either. This is why I was so not wanting to talk about it b/c it's so controversial that if anyone got wind of it .. it would be unavailable. I'm frustrated b/c it's gotten me so far.
So what is in my future? For now, we will stop (obviously we have to b/c he has no more of this drug in his office) and will look at an alternative to use. First in a couple of weeks, I will do the MSA test. This is the test that looks at my "energy" and decides which supplements balance in my body and which things I do not need. It has also correctly identified that I had heavy metals, bartonella, babesia, parasites, candida, and borrelia before any tests picked up on it.
I will not be on any Antibiotics. We are going to be working on getting rid of the damage that was caused by Lyme Disease. I will also start on some fiber to get some of this mess out of my colon (how loverly).
As long as things go as planned, I will not have another IV for 6 months. Our plan for now is for me to start on this stuff called OSR. I don't really quite understand it, but from what I do gather it helps the body make Glutathione. With that, it will help my body detox from Heavy Metals and maybe other things (my guess). Then in 6 months, I will have another IV Chelation Challenge. By that time, my veins should have healed from the PICC line and it will have been well over a year since my veins were accessed by IV other than the PICC.
If my metals have decreased, we know that what we're doing is working. IF my metals have increased or stayed the same, we will know that what we're doing is not working. It will be determined at that point whether more IV Chelations are needed. Of course at that time I am guessing if it is determined that I *do* need more of those ... OR I'm backsliding and am needing IV treatments and my vein access is not great ... another PICC will be discussed, but we're both hopeful that will not be needed.
Also I am going to get another Western Blot test just to see how my bands line up (I really want a CDC positive to SHOVE in my regular physician's face).
So that's all for now.
The reason I have not wanted to post exactly what I am getting on this blog or any other public forum is for political reasons. Some doctors do not believe that Chronic Lyme exists. Some doctors do. Some doctors that do believe in Chronic Lyme believe in strictly Antibiotic treatments and others believe that there are some alternate methods of treatment. I have a doctor that believes in BOTH methods. The more he learns about Lyme & treatment the more he believes in an alternative path of treatment.
In September, I had a live blood analysis done. I have never asked about other patients that have had this done. However in my appointment on Saturday, my doctor mentioned that the doctor that does this Live Blood Cell Microscope now comes to his office every other month. He now clears his day for these appointments so he can see exactly what is going on with his patient's blood cells.
He said in January there were 5 patients that had this Live Cell done. Three of those patients used the treatment like I used. This Experimental Alternative treatment. Two of the patients used regular antibiotics. Apparently two months prior, they both had about the same amount of borrelia in all three forms of bacterial (L shape, spiral shape & cyst shape). Well in January (IF I am understand correctly) .. the 3 patients that did the alternative method ... there were VERY FEW Cyst forms and their spiral loads had decreased dramatically. The two patients that had done antibiotic therapy .... had LOTS OF CYSTS and lots of the other types too.
What does this have to do with MY appointment you ask? Well, I just found out that my doctor is having difficulty getting the alternative therapy. The doctor that invented this along with another physician in Texas are in trouble with the medical board in Texas because they have been using this treatment. The doctor that invented this & the doctor in Texas have had very high success rates with this treatment. I do not know the whole break down of the situation, but either way it is making it difficult for doctors to get this treatment.
As it was, the compouding pharmacy that made this drug wouldn't send it to North Carolina. So my doctor had to order it through another doctor who would sent it to the few patients he had on this protocol. Well now that doctor has closed his office making it impossible for my doctor to get his hands on these treatments.
THIS TREATMENT HAS SAVED MY LIFE!!!!! I am so upset that not only will I not be able to finish this treatment, but that others that have just begun this treatment won't have access to it either. This is why I was so not wanting to talk about it b/c it's so controversial that if anyone got wind of it .. it would be unavailable. I'm frustrated b/c it's gotten me so far.
So what is in my future? For now, we will stop (obviously we have to b/c he has no more of this drug in his office) and will look at an alternative to use. First in a couple of weeks, I will do the MSA test. This is the test that looks at my "energy" and decides which supplements balance in my body and which things I do not need. It has also correctly identified that I had heavy metals, bartonella, babesia, parasites, candida, and borrelia before any tests picked up on it.
I will not be on any Antibiotics. We are going to be working on getting rid of the damage that was caused by Lyme Disease. I will also start on some fiber to get some of this mess out of my colon (how loverly).
As long as things go as planned, I will not have another IV for 6 months. Our plan for now is for me to start on this stuff called OSR. I don't really quite understand it, but from what I do gather it helps the body make Glutathione. With that, it will help my body detox from Heavy Metals and maybe other things (my guess). Then in 6 months, I will have another IV Chelation Challenge. By that time, my veins should have healed from the PICC line and it will have been well over a year since my veins were accessed by IV other than the PICC.
If my metals have decreased, we know that what we're doing is working. IF my metals have increased or stayed the same, we will know that what we're doing is not working. It will be determined at that point whether more IV Chelations are needed. Of course at that time I am guessing if it is determined that I *do* need more of those ... OR I'm backsliding and am needing IV treatments and my vein access is not great ... another PICC will be discussed, but we're both hopeful that will not be needed.
Also I am going to get another Western Blot test just to see how my bands line up (I really want a CDC positive to SHOVE in my regular physician's face).
So that's all for now.
Monday, February 9, 2009
Not Me Monday!
Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.
On Wednesday when it snowed, I did not mess up writing the date on my car. I did not put 1-2-09 only to try to "correct" it by putting 2-4-09 on top of it.
With the exception of post Anti-microbial treatments, I have the memory of an elephant. Tell me something once and I remember it for a life time so this means I absolutely did not forget on Thursday the code to get into my work place and almost cause the alarm to go off by plugging in my ATM pin code instead.
I absolutely did not panic one bit when the phone rang for me at work and begin to tear up when I heard my nurse on the other line. I did not rush down there to discuss what she said on the phone because there was no way I could not be attentive on the phone with her. And with previous said "memory," there is no way I could forget what she wanted to talk to me about either.
I am such a compassionate person that I would never ever ever consider bringing a cake to my doctor's office when he was having a weight loss support group meeting right after my appointment. I most certainly would never ever use the term "Fatty Patty" when the head huncho of said support group was walking behind me. (oops)
I have never been a "hoarder" of momentos therefore I would NEVER EVER ask to keep the PICC Line after it was pulled and I most certainly not take pictures of it and the oozy goozy yucky mess that was on my sterile dressing after the removal. Nope, not me.
And I would never consider being silly while my husband was taking photos of me on the last day of having the PICC Line. I would never ever "strike THIS Pose."
On Wednesday when it snowed, I did not mess up writing the date on my car. I did not put 1-2-09 only to try to "correct" it by putting 2-4-09 on top of it.
With the exception of post Anti-microbial treatments, I have the memory of an elephant. Tell me something once and I remember it for a life time so this means I absolutely did not forget on Thursday the code to get into my work place and almost cause the alarm to go off by plugging in my ATM pin code instead.
I absolutely did not panic one bit when the phone rang for me at work and begin to tear up when I heard my nurse on the other line. I did not rush down there to discuss what she said on the phone because there was no way I could not be attentive on the phone with her. And with previous said "memory," there is no way I could forget what she wanted to talk to me about either.
I am such a compassionate person that I would never ever ever consider bringing a cake to my doctor's office when he was having a weight loss support group meeting right after my appointment. I most certainly would never ever use the term "Fatty Patty" when the head huncho of said support group was walking behind me. (oops)
I have never been a "hoarder" of momentos therefore I would NEVER EVER ask to keep the PICC Line after it was pulled and I most certainly not take pictures of it and the oozy goozy yucky mess that was on my sterile dressing after the removal. Nope, not me.
And I would never consider being silly while my husband was taking photos of me on the last day of having the PICC Line. I would never ever "strike THIS Pose."
Stay tuned next Monday for another Crazy Not Me!
For my previous NMM's click on the links below:
Week 1: Wii Fit Cheater
Week 2: OCD Shoe Lace
Week 3: "Your in" for a real treat on this one.
Week 4: I'm 12 again!
For my previous NMM's click on the links below:
Week 1: Wii Fit Cheater
Week 2: OCD Shoe Lace
Week 3: "Your in" for a real treat on this one.
Week 4: I'm 12 again!
Sunday, February 8, 2009
2 down!
1. Take a nice long shower without a picc line cover ~ CHECK ~
9. Sleep on my right side without hurting ~ CHECK
Sorry no pictures of this for ya! :o)
2. Find a hot tub somewhere and enjoy it.
3. Swim in a pool.
4. Go Bowling.
5. Walk on the beach
6. Go to a Winterguard show! :o)
7. Spin a rifle. (Okay maybe not .. but it would be fun.)
8. Hug my friends without fear of being hurt
9. Sleep on my right side without hurting ~ CHECK
Sorry no pictures of this for ya! :o)
2. Find a hot tub somewhere and enjoy it.
3. Swim in a pool.
4. Go Bowling.
5. Walk on the beach
6. Go to a Winterguard show! :o)
7. Spin a rifle. (Okay maybe not .. but it would be fun.)
8. Hug my friends without fear of being hurt
Saturday, February 7, 2009
IT'S OUT!!!!!
IT'S OUT! IT'S OUT! IT'S OUT!
I was told one time that if you're really excited about something you should say it three times! Here is one of the last pictures taken with my PICC line still attached. We're both saying "goodbye." this was about two hours prior to the removal.
My PICC line was removed this morning as planned!
It went very smoothly. My doctor told me to take a deep breath. He said as I exhaled he would pull it out. By the time I released the breath, he was done. I did not feel a thing. It is uncomfortable now, but I suspect that will end soon enough. It's weird. I feel a bit empty. So as my doctor was about to throw it in the bin, I asked if I could keep it. He said yes and packed it away for me to take home.
I was told one time that if you're really excited about something you should say it three times! Here is one of the last pictures taken with my PICC line still attached. We're both saying "goodbye." this was about two hours prior to the removal.
:o)
My PICC line was removed this morning as planned!
It went very smoothly. My doctor told me to take a deep breath. He said as I exhaled he would pull it out. By the time I released the breath, he was done. I did not feel a thing. It is uncomfortable now, but I suspect that will end soon enough. It's weird. I feel a bit empty. So as my doctor was about to throw it in the bin, I asked if I could keep it. He said yes and packed it away for me to take home.
Thursday, February 5, 2009
Celebration Part 2
My PICC Line is being removed on Saturday February 7, 2009.
May "she" rest in peace. She has treated me well for the most part and helped me from getting stuck 15 times a week (2 or 3 treatments a week times the 6 times it would have taken to get an IV started).
Born: July 17, 2008
Removal/Death: February 7, 2009
Youtube removed video on Youtube! SO no more "Celebration" song. Sorry guys.
May "she" rest in peace. She has treated me well for the most part and helped me from getting stuck 15 times a week (2 or 3 treatments a week times the 6 times it would have taken to get an IV started).
Born: July 17, 2008
Removal/Death: February 7, 2009
Youtube removed video on Youtube! SO no more "Celebration" song. Sorry guys.
Wednesday, February 4, 2009
Post Picc Line
A huge hint about the Celebration post!
I've been contemplating what all I want to do when I get my PICC line removed. There are so many things that I decided to make a list. Though I don't need a reason to make a list. I'm a list maker by nature.
1. Take a nice long shower without a picc line cover
2. Find a hot tub somewhere and enjoy it.
3. Swim in a pool.
4. Go Bowling.
5. Walk on the beach
6. Go to a Winterguard show! :o)
7. Spin a rifle. (Okay maybe not .. but it would be fun.)
8. Hug my friends without fear of being hurt
9. Sleep on my right side without hurting
I've been contemplating what all I want to do when I get my PICC line removed. There are so many things that I decided to make a list. Though I don't need a reason to make a list. I'm a list maker by nature.
1. Take a nice long shower without a picc line cover
2. Find a hot tub somewhere and enjoy it.
3. Swim in a pool.
4. Go Bowling.
5. Walk on the beach
6. Go to a Winterguard show! :o)
7. Spin a rifle. (Okay maybe not .. but it would be fun.)
8. Hug my friends without fear of being hurt
9. Sleep on my right side without hurting
Saturday, January 24, 2009
Jennifer's Lyme Life
**Updated** May 8, 2009
For those of you that are just learning about my Journey, go to these old blogs to see how far I've come.
My Diagnosis
My Therapy
A day in the life of a treatment
My PICC Line Story Part 1
My PICC Line Story Part 2
Grey's PICC Line Story
November 15, 2008 Update
Mercury Toxicity (My Mercury test came back negative)
Aluminum Toxicity
PICC Line Removal
Two weeks post PICC
Two year anniversary plus supplements
March 15, 2009 Update
Post PICC Pics
Conflicted Lymie
CDC Positive Test Results
Ups and down of Lyme
There ya go. The most important health blogs all in one place! Enjoy reading if you've not read them before.
For those of you that are just learning about my Journey, go to these old blogs to see how far I've come.
My Diagnosis
My Therapy
A day in the life of a treatment
My PICC Line Story Part 1
My PICC Line Story Part 2
Grey's PICC Line Story
November 15, 2008 Update
Mercury Toxicity (My Mercury test came back negative)
Aluminum Toxicity
PICC Line Removal
Two weeks post PICC
Two year anniversary plus supplements
March 15, 2009 Update
Post PICC Pics
Conflicted Lymie
CDC Positive Test Results
Ups and down of Lyme
There ya go. The most important health blogs all in one place! Enjoy reading if you've not read them before.
Friday, January 23, 2009
Chelation Challenge.
Tomorrow I have the Chelation Challenge.
I'm sure everything will come out just fine, but please pray that it goes quickly and that all my test results come back in normal range. I try to be strong and patient, but I am tired of this PICC Line and am ready for some normalcy (whatever that is).
I know it's all in God's time and I will be patient should I need to keep the PICC Line in for longer. However, it would be nice to know that the end of this PICC Line is in sight (like February maybe) and not have another kind of treatment on top of the maintenance part of Lyme Therapy.
I'm sure everything will come out just fine, but please pray that it goes quickly and that all my test results come back in normal range. I try to be strong and patient, but I am tired of this PICC Line and am ready for some normalcy (whatever that is).
I know it's all in God's time and I will be patient should I need to keep the PICC Line in for longer. However, it would be nice to know that the end of this PICC Line is in sight (like February maybe) and not have another kind of treatment on top of the maintenance part of Lyme Therapy.
Tuesday, January 13, 2009
Living the Lyme Life
This is a long post. Sorry in advance.
I could feel it on the inside. Every muscle and bone ached ... I couldn't see straight. I was dizzy. I was overall miserable. It was at that moment that I stopped living a normal life and began living the Lyme Life. I was sick all night and slept just a little. I woke up, I went to work, I came home and I ate. Then I went to bed only to be disrupted by a night of vomiting and diarrhea. Then the next day looked exactly the same. It wasn't pretty, but it was my life.
Every moment of my day was filled with vitamins and antibiotics. If someone wanted to invite me for dinner, I had to insure I had my little burgundy lunch bag with me. It did not have food in it. It had my antibiotics in them and other vitamins that I may need IF lunch/dinner ran late. I stopped exercising at the gym because it was too inconvenient and painful. My brain wasn't working well enough to do the Step Aerobics that I just loved and my body was failing me. Also it was too difficult to stop half way through a wonderful work-out to take my antibiotics.
I fell into the Lyme rabbit hole. It was a different world than I was accustomed. If I had to make a guess I would assume that most people couldn't even begin to understand my body's own personal prison. Every person with Lyme Disease is affected differently and I can not even begin to understand my friend's personal prison. Their prison is different than my prison.
After a year of treatment, my prison was becoming more and more restricting. The restrictions of the medications themselves were suffocating. Take this two hours away from this and you have to eat with this one, but you can not eat with that one and the one you can eat with you can take with this other one, but only if you don't eat dairy! You can only have dairy two hours away from another drug and make sure you don't lie down at least 2 hours after you take this one and whatever you do ... do not go out in the sun or you'll get sunburned! This one will make you vomit and this one will give you diarrhea and be careful with this one because it can cause severe dizziness, tendon ruptures and embarrassing flatulence!
Before my diagnosis, I thought knowing what I have is better than not knowing what I have. But I was beginning to think after over a year of treatment .... I'd rather be dead than live in this personal prison. My last straw was on a day in which I passed out at work and was hallucinating streaks of pastel colors. Finally in May of 2008, I was offered a key to get out of this imprisonment. I was offered the AMT treatment that would leave me not taking a single antibiotic. I would be able to eat dairy whenever I pleased and would be able to nap without worrying about acid reflux and go outside (should I really want ... and at this point can you blame me for not wanting to be out and about with the ticks at large?).
From May to July, I spent in my own personal IV prison. It would take 3 or 4 jabs to get an IV started. I would drink 24 or more ounces of water & use a heating pad for them to get an IV started. Then finally on July 17, 2008, I was given a reprieve of needle sticks. My PICC line was inserted. It gave me a new set of problems, but these were much better than the alternatives.
Now in January, I still have the PICC and am working on Living the Life instead of Living the Lyme Life. Most of the time, I forget I even have the IV in my arm. In fact, I am forgetting so much that I have forgotten on several occasions to put in the Heparin in my line on each night and almost got in the shower the other night without my picc line cover!
I am taking my life back. I have started exercising again. For Christmas, I was able to locate my husband the Wii. He has been wanting it for a while so that we could buy a Wii Fit. I was hesitant because I figured that the Wii is just a "fad." Well, I purchased it for him and we have really enjoyed it. My parents located and purchased a Wii Fit for our birthday. Both of our birthdays are in January. We began working out on December 30th and I have only missed two days. I have worked out at least 30 minutes every day. Some days I have even worked out for 90 minutes.
It's amazing to be living life again after living so long in the Lyme life! There is hope for all of you living the Lyme Life! Yes I am still in treatment and I am not at 100 percent, but my days are so much better than they were a year ago ... even 6 months ago. Maybe one of these days I won't even consider myself a Lyme patient, but a Lyme Conqueror.
I could feel it on the inside. Every muscle and bone ached ... I couldn't see straight. I was dizzy. I was overall miserable. It was at that moment that I stopped living a normal life and began living the Lyme Life. I was sick all night and slept just a little. I woke up, I went to work, I came home and I ate. Then I went to bed only to be disrupted by a night of vomiting and diarrhea. Then the next day looked exactly the same. It wasn't pretty, but it was my life.
Every moment of my day was filled with vitamins and antibiotics. If someone wanted to invite me for dinner, I had to insure I had my little burgundy lunch bag with me. It did not have food in it. It had my antibiotics in them and other vitamins that I may need IF lunch/dinner ran late. I stopped exercising at the gym because it was too inconvenient and painful. My brain wasn't working well enough to do the Step Aerobics that I just loved and my body was failing me. Also it was too difficult to stop half way through a wonderful work-out to take my antibiotics.
I fell into the Lyme rabbit hole. It was a different world than I was accustomed. If I had to make a guess I would assume that most people couldn't even begin to understand my body's own personal prison. Every person with Lyme Disease is affected differently and I can not even begin to understand my friend's personal prison. Their prison is different than my prison.
After a year of treatment, my prison was becoming more and more restricting. The restrictions of the medications themselves were suffocating. Take this two hours away from this and you have to eat with this one, but you can not eat with that one and the one you can eat with you can take with this other one, but only if you don't eat dairy! You can only have dairy two hours away from another drug and make sure you don't lie down at least 2 hours after you take this one and whatever you do ... do not go out in the sun or you'll get sunburned! This one will make you vomit and this one will give you diarrhea and be careful with this one because it can cause severe dizziness, tendon ruptures and embarrassing flatulence!
Before my diagnosis, I thought knowing what I have is better than not knowing what I have. But I was beginning to think after over a year of treatment .... I'd rather be dead than live in this personal prison. My last straw was on a day in which I passed out at work and was hallucinating streaks of pastel colors. Finally in May of 2008, I was offered a key to get out of this imprisonment. I was offered the AMT treatment that would leave me not taking a single antibiotic. I would be able to eat dairy whenever I pleased and would be able to nap without worrying about acid reflux and go outside (should I really want ... and at this point can you blame me for not wanting to be out and about with the ticks at large?).
From May to July, I spent in my own personal IV prison. It would take 3 or 4 jabs to get an IV started. I would drink 24 or more ounces of water & use a heating pad for them to get an IV started. Then finally on July 17, 2008, I was given a reprieve of needle sticks. My PICC line was inserted. It gave me a new set of problems, but these were much better than the alternatives.
Now in January, I still have the PICC and am working on Living the Life instead of Living the Lyme Life. Most of the time, I forget I even have the IV in my arm. In fact, I am forgetting so much that I have forgotten on several occasions to put in the Heparin in my line on each night and almost got in the shower the other night without my picc line cover!
I am taking my life back. I have started exercising again. For Christmas, I was able to locate my husband the Wii. He has been wanting it for a while so that we could buy a Wii Fit. I was hesitant because I figured that the Wii is just a "fad." Well, I purchased it for him and we have really enjoyed it. My parents located and purchased a Wii Fit for our birthday. Both of our birthdays are in January. We began working out on December 30th and I have only missed two days. I have worked out at least 30 minutes every day. Some days I have even worked out for 90 minutes.
It's amazing to be living life again after living so long in the Lyme life! There is hope for all of you living the Lyme Life! Yes I am still in treatment and I am not at 100 percent, but my days are so much better than they were a year ago ... even 6 months ago. Maybe one of these days I won't even consider myself a Lyme patient, but a Lyme Conqueror.
Saturday, January 3, 2009
update on rash
**** New Layout for the New Year **** I may change it back to where it was before, but I think I like it. It's nice and relaxing.
Back to your regularly scheduled posting:
I still itch and it's like water torture. I got an email from my doctor this morning (yes on a Saturday) to come on by the office to have my face and arm checked out.
First things first:
My arm looked great. We changed the dressing and there were no blisters or rash under the dressing. That is a blessing because every time I get infected with yeast my picc line goes haywire.
Seconds: My nurse is almost positive it's just a yeast overgrowth. So I'm to continue the Diflucan. Last night at a moment of brilliance, I took some Benedryl. I don't know if it stopped the itching all night or if it just put me in a Benedryl coma. Either way, I got some much needed sleep. We also picked up some Benedryl Cream to see if that might help with the itching to not put me in a coma during the day. I have in the past used an over the counter anti-fungal cream to reduce the itching to a minimum, but in this particular situation that antifungal isn't reducing the itching enough. I want to share a picture, but the rash doesn't show up well on camera.
If the itching and rash isn't reduced significantly by Monday, I am to call up to the office again. They will either prescribe another antifungal medication or get me something. I dunno what they'll do. She said the option is that I could have something viral that gave me the rash. Hopefully between the Diflucan and the Benedryl cream, I will be feeling back to my normal self soon.
Back to your regularly scheduled posting:
I still itch and it's like water torture. I got an email from my doctor this morning (yes on a Saturday) to come on by the office to have my face and arm checked out.
First things first:
My arm looked great. We changed the dressing and there were no blisters or rash under the dressing. That is a blessing because every time I get infected with yeast my picc line goes haywire.
Seconds: My nurse is almost positive it's just a yeast overgrowth. So I'm to continue the Diflucan. Last night at a moment of brilliance, I took some Benedryl. I don't know if it stopped the itching all night or if it just put me in a Benedryl coma. Either way, I got some much needed sleep. We also picked up some Benedryl Cream to see if that might help with the itching to not put me in a coma during the day. I have in the past used an over the counter anti-fungal cream to reduce the itching to a minimum, but in this particular situation that antifungal isn't reducing the itching enough. I want to share a picture, but the rash doesn't show up well on camera.
If the itching and rash isn't reduced significantly by Monday, I am to call up to the office again. They will either prescribe another antifungal medication or get me something. I dunno what they'll do. She said the option is that I could have something viral that gave me the rash. Hopefully between the Diflucan and the Benedryl cream, I will be feeling back to my normal self soon.
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