I'm at infusion. I can't believe I am starting the 4th week of coming everyday and doing two antibiotics, one of which was marked as "allergy" for the last 7 years. I have had days where it has gone long and I have itched. We have determined that Benedryl through the port does not agree with me at all. So, I do what I can to avoid reaction to this antibiotic so I don't have to have the Benedryl. They can also give me another medication for reaction (decatron?) but it is steroidal. From our research in the beginning, steroids is not good for Lyme but quite bad. However, after our two bouts with the Benedryl not agreeing, and me being pretty adamit about not doing the other (I really don't care to take anything that will encourage the little boogers), Chris found where, if you have to do it, that they prefer you be on antibiotics. Either way, I don't care to have to have it but I also don't want the antibiotic taken away because I couldn't "tolerate" it.
IGenex test came back positive. This is all I know for now until we meet with the doctor and get more specifics. The important thing is that its still positive and therefore she stated we would continue treatment. The Lyme symptoms have really been apparent in the last several weeks. This is frustrating but I am hoping the strong treatment is just bringing out the Lyme and its being killed off with treatment. That's how I choose to look at it for now, but it does nag at the conscience that all the tests will point to remission and I will be stuck with these symtpoms.
Today, yes today, I finally found a lab that may know what they are doing and I will get the other test done this week. Which leads me to my thoughts for the day: Inconvenience vs. Blessing.
I got up early this morning after a rough nights sleep and left the house so I could hit a LabCorp to have two orders of tests done and so I could get to my 4-5 hour infusion, get it done, and get home with my family. After 2 different labs, phone calls and driving around, and a couple hours chasing a place to get this test done I got an answer. Inconvenient, yes. Pain, yes. BUT, in the process I thanked God for a husband that is willing to be home on his day off and do school with the girls so I can take care of this and do this. In the process, I was able to answer several texts from people and listen to a friend share her frustration and be there for her at least by phone. I have another friend whose daughter is having a surgical procedure today and I prayed and texted her that I was thinking about her and praying for her. I was able to "touch base" with several people=Blessing! Lyme has been an inconvenience but also a blessing. Lyme has been very difficult and challenging but very rewarding. Lyme has cost us so much but I have gained so much through it. Through it all it has transformed me both cellular and in character and the way I think. I have been forced to slow down and not do what I thought I wanted to do but in the slowness I have heard God and felt Him tug and pull on my heart. All this and more would not be possible if I didn't have Lyme. I love being slowed down and yet given an ounce of energy I find the old self quickly rear up and want to run around with my head cut off. For now, there has to be a balance and I have to ration my energy and strength.
Saturday was a perfect example of this. Chris scheduled this youth event called "Dinner for 10" where there are 2-3 adults and 6-7 youth, females at our house and males at another house. I took Maddie to dance, came home and started cleaning house and cooking for the evenings event. I had planned a nap, which is so vital to me surviving this kind of activity, but it didn't happen. In the midst, if I'm not completely knocked down with a migraine or how I feel, I don't realize I am over doing it as I bask in being able to have a taste of productivity and "living". But as soon as I slow down or sit down it all hits, and then I am down the next day completely. Is it worth it? Yes! But I have to be choosy in what its for and how often and I have felt a slight panic setting in because this time last year I ended up in bed all December. We believe its because about this time of year every weekend is booked with holiday festivities and things to do for them. It is so easy to have a full plate and before you know it you are running around with your head cut off. I think that's exactly what satan wants so that we don't have time for what really important, we lose where our focus should be (on God and not on Godly activities), and then we can't hear or feel God tug and pull and direct. It is so easy to do. Our society thrives on the hustle and bustle. Its almost looked upon culturally as unacceptable if you aren't running around with your head cut off. I get frustrated that I can't do what I want to do, and what I want to do is not "inappropriate" or ungodly or crazy.....teach piano, help teach Bible Drill, help with Kids Praise, attend Sunday School, attend women's conferences, go grocery shopping on a weekly basis, get the laundry done on a weekly basis (currently going on 4 weeks of being behind on this), keep my house picked up and fairly clean, teach my kiddos and do more then just the basics and thrive in "survival" mode but really get to do more activities with them, practice and play the piano regularly, and the list goes on. However, I am thankful I have Lyme that has forced me to slow down (okay, at times come to a halt) and therefore, I have been more available. Available to take a phone call from a friend. More available to pray for friends and family on specific things and as God brings them to mind. More available for snuggling with my girls. More available to have tickle fests with my girls. More available to hear and feel from God. More available to interact with people I don't know and listen to their cares. Somehow Lyme has made me more bold, and though maybe weaker for a time physically, it has made me stronger as a person. And the list goes on. There are blessings in inconveniences!
Monday, October 31, 2011
Tuesday, October 25, 2011
Still Fighting
Its been so long. I have blogged a couple times but just haven't posted them. I'm sitting here at infusion and for the first time in quite a while I feel moved to blog. Just not sure where to start. My type A person wants to begin where I left off but so much has happened it is overwhelming thinking about trying to "catch up". I'm also at a weird place right now mentally. The last two weeks of infusions has really worn on me. I also didn't feel my blogging was accomplishing anything positive so I would blog for my own record, but I received an email from a fellow Lymie that really encouraged me and inspired me that maybe I should blog again, not for family and friends but for other Lymies because its affirming to talk or read that someone is struggling with the similar things. I gave up keeping friends and family "updated" especially after these last 6 months when things got so crazy. It became apparent to Chris and me that if people really "wanted" to know, they asked. I have never been one to shove my disease down people's throats but if you ask I am glad to share. Unfortunately, a lot of times people ask just to make conversation or appear social and then they get more then they bargained for. So, we have kept pretty much to ourselves about what is going on. Unfortunately this can feel pretty lonely. But we have come to realize in the last year and a half with this disease and in fighting it that we have to surround ourselves with people that are going to support and love us whether they agree or understand. I thought I was crazy at first thinking this, ignoring my body's response to "negative" or even challenging relationships or interactions. Then, recently I began reading a book called "The Road to Immunity" and the author, Dr. Bock, says, "To get my patients healthy (and to keep them that way), I recommend a combination of traditional medical practices (for example, medications or surgery when absolutely necessary), natural healing therapies (including a sound diet, vitamins, nutrients, herbs, homeopathy, and acupuncture among others), and emotional support (such as stress management and psychotherapy)." Part of my stress management is limiting putting myself in position where I know it will be stressful. Dr. Bock goes on to say, "We can start by shielding it from unnecessary strain or damage and by providing it with the nutrients it needs: fresh air, clean water, healthful food, and love (yes, love is a nutrient)." This affirmed that I am not totally crazy in how I approach interactions and what situations I put myself in.
Love is a funny thing. Everyone has a different definition of Love. I choose to use Christ as my example. He loved the person, didn't always agree with what they did or the choices they made, but He loved them and cared for them, and He never gave up on them unless they blatantly denied God. The interesting thing is that every person Jesus came in contact with were fallible, imperfect, and He never gave up on them. Unfortunately, one thing Chris and I have learned is that trials of life can shrink the circle of people you thought you could rely on to a remanent. But we have to remember that Christ was perfect and people are fallible...so fallible. I believe that one of the many things God wanted to bring to my attention through this disease was that what I relied on here on earth would let me down and when would I begin to rely solely on Him, trust only Him, and look to Him for what I needed. I can't say I have fully accomplished this but I have gotten better. I will say that this disease and all we have been through with it has brought my immediate household closer.
This last March I began to feel a "switch", something positively different. I was on Zithromycin and Flagyl and many supplements. I felt I was a bit more functionable but at the same time other things starting going hay wire. I began losing weight, my hair was falling out by hand fulls, I was losing my hearing, and my vision in my right eye was getting progressively worse, to just name a few. I new these things weren't "normal" or good but I figured I was more functional so maybe it was all in my head just how bad it was.
In June, after having put up with "bucket head" symptom for a year and it had gotten so bad, I decided to see my ENT that I love and that has stood by me since 1999. This is when I found out I was losing hearing. He was very concerned and felt it was the Zithromycin and wanted me in to see my lyme doctor ASAP. We researched Zithromycin and did read where it can cause ototoxicity. We scheduled an appointment with the lyme doctor and had a battle plan of what antibiotics we would talk to her about switching to. We never got the chance. She saw the weight loss (at that time 117) and she flipped and pulled me completely off treatment and this is after she had always said she would never pull treatment in fear it would cause me to back slide. She sent me to a GI specialist. Tests were ran and they revealed that my esophagus was so inflamed she stated she didn't know how I was able to get water down. I was then at that point, taken off all oral meds. Within weeks of being off all oral medications my lyme symptoms began coming back. I emailed the lyme doctor and pleaded with her, not knowing how long it would take for the esophagus to heal (resulting in a new diet of no meat or dairy...only soft foods...I've lost count what number of diet this is), to revisit starting treatment back up, only parentarily (IV). She agreed and after being off of treatment for 3 weeks I started treatment back up in the infusion lab through IV, 3 times a week receiving Rocephin and also vitamin C for immune support since I couldn't take any of my supplements for immune support. I did notice a different in getting off of all the supplements. I do believe in the beginning they were helpful but towards this point they had become more toxic to the system (I was taking 15-20 pills a day...thus the esophagus). The digestive system was trashed and probably not absorbing much if at all what I was taking. Some of the medications, like my migraine preventative, are supposed to be slowly decreased and I cold turkey quit. I saw no side effects....again, probably because I wasn't absorbing the full doses.
The first day back on treatment it only took the nurse 2 sticks. The veins have been through a lot in the last 20+ months. However, the second day of treatment she stuck me 4 times and couldn't get a single vein. They would just blow. At this point, frustrated because I'm wanting my treatment, the nurse contacts the doctors office and goes to bat for me on a PIC line. In thinking through this, I have had a midline and a PIC (which did not go well at all). I had been down those roads. Since we didn't know how much longer I would be fighting Lyme, nor how long it would take the esophagus to heal, I emailed the doctor and pleaded my case for a PORT. I was told she never agrees to them via email so I had planned to be in her office the very next morning first thing. To my surprise she agreed.
This was all the week before I was scheduled to fly out to see my grandmother. So, I was hoping it could be done the next day, Friday, have the weekend to heal, and possibly fly out. Nope! I had to see a surgeon for consultation before it could even be scheduled. This consultation took all day Friday with more tests and the procedure was scheduled for Monday...the Monday before the Wednesday I was to fly out. The procedure, which is another whole blog in itself, went well, but being a surgical procedure where they implant a device in your chest that has a catheter that leads to the heart, has two incisions. I had my first treatment with it that day, and also saw my GI who ordered an MRI of my bile duct in which they refused to use the PORT for the dye.
It is difficult to put into words what May through now has been like. The above is just a sampling. It was always something we had to fight through, or another doctor to see. The summer was spent traveling from one doctor to the next. Things kept changing weekly, sometimes more then that. There's no way to capture it all on paper.
I rescheduled my flight because with the new PORT was more dependent on others and wasn't good for anything. A week made a big difference and with some assistance I was able to fly out to see my grandmother. I found it interesting that to get any kind of help at the airport I had to sit in a wheel chair. But I complied,...when you are in discomfort and unable to do things, sometimes you don't have a choice.
After about 4 weeks of treatment through the PORT my cd-57 went up to 55, the highest it has ever been (180 is our goal). I truely believe its because we are doing treatment through the PORT which goes straight to the heart and the vitamin C has also played a part. If you read up on vitamin C done intravaneously it is used for cancer patients to help with detoxing as well as other things (you won't find Lyme mentioned....some day you will). After the first 4 weeks, there was a week off of treatment and I went down hill. The little energy I had and functionality declined greatly. We went in and begged for another 4 weeks.
Two weeks ago we scheduled another appointment after being on treatment now for 8 weeks with the PORT to ask questions. I had this nagging feeling (aka God) that if we needed to do treatment five days a week for a month and then take two weeks off . The two weeks off was my idea just to appease the doctor who keeps threatening to take me off treatment to give the digestive system a break. Um, hello, why would I want to take a "break" when numbers are finally going in the right direction? Remember the last time she took me off treatment? My lyme symptoms came back and they continue to worsen with each day. So, we went in to do battle again. I also had questions and other "suggestions". I was so afraid I wouldn't remember them and think clearly and I was afraid to present my ideas because I didn't think she would go for them. I so dislike that I, the sick one, have to be the one on my toes and know what to ask or it feels nothing happens. The doctor came in and God took over. I had this clear mind accompanied by boldness and I remember my questions (Chris couldn't keep up with them on his phone) and just went "bam" "bam". When I mentioned doing treatment five days a week she shook her head no. I asked why we don't test the lyme test through iGenex, the most sensitive lab (I knew the answer but wanted to put it out there) and she said because insurance doesn't cover it but said she would run it this time through iGenex. I had also pointed out that we had always been doing at least two antibiotics and should we be doing two now. Her answer was no. Chris began to ask if we are doing everything possible and I mentioned that I was even willing to try Vancomycin, a medication I reacted to when I was in labor/delivery with Maddie (?) and have been labeled as allergic to, but its the best antibiotic in fighting Lyme. I, being a good lawyer, pleaded my case that I'm under supervision in the infusion lab and if anything happened I was in good hands. She agreed! Ha! So, we leave to go do an infusion using the Vancomycin. I sent word out to my prayer warriors to pray that I would tolerate it. We get to the infusion lab and come to find out she not only put Vancomycin with vitamin C, but left on the Rocephin and prescribed it five days a week. Unbelievable! Everything I asked/addressed she did.
I got through 3/4 the bag of vancomycin and began to itch like crazy. I was so happy that I got through that much. I was given benedryl through my PORT (nasty!!!) and had to stop the infusion. Within about 10 minutes I was in the public bathroom sick to my stomach and doubled over for over an hour before I could get up and walk out. Afraid it was the vancomycin I didn't tell anyone and prayed the whole time that no one would walk in and find me doubled over on the floor. I knew they would call 911 and my vancomycin would be taken away. I prayed and prayed and got through it.
So, for the last two weeks I have come every day to do my infusion which takes about 4 hours. The last two weeks the girls would come with me and we would do school here at infusion most days or I would come in the afternoon with Becka and she would finish school here. Last Friday, I fell apart. I think the two weeks of dragging everything and everyone to infusion and sitting here for 4 hours trying to do school wore on me. After my infusions I am zapped!!
Yesterday, I came by myself (first time) while Chris stayed at home and did school with the girls to try to relieve the stress and when I woke up toward the end of infusion my IV was dripping super fast and I was itching. I was given benedryl again through my PORT and again I ended up sick to my stomach and doubled over for an hour. It was as bad as the first time but still pretty bad. The other option is a drug called Decatron which is steroidal which is not good for Lyme.
After 8 weeks of doing treatment through the PORT my cd-57 is up to 142. We are still waiting to hear from iGenex. So much will be determined off of that test. If there are NO bands present on the iGenex test, this will probably be my last month of antibiotics. If there are bands present then we will probably continue treatment. The only concern I have is that my cd-57 is up and if the iGenex comes back completely negative and we still have all the lyme symptoms. I have felt that I have slowly degressed back to where I was before we started treatment.
My computer is dying so I need to stop. I hope for my fellow Lymies this is helpful in some proportion. I have learned so much just in talking with other Lyme patients here in the infusion lab. I now know more people with Lyme then I do with cancer. It blows me away.
Love is a funny thing. Everyone has a different definition of Love. I choose to use Christ as my example. He loved the person, didn't always agree with what they did or the choices they made, but He loved them and cared for them, and He never gave up on them unless they blatantly denied God. The interesting thing is that every person Jesus came in contact with were fallible, imperfect, and He never gave up on them. Unfortunately, one thing Chris and I have learned is that trials of life can shrink the circle of people you thought you could rely on to a remanent. But we have to remember that Christ was perfect and people are fallible...so fallible. I believe that one of the many things God wanted to bring to my attention through this disease was that what I relied on here on earth would let me down and when would I begin to rely solely on Him, trust only Him, and look to Him for what I needed. I can't say I have fully accomplished this but I have gotten better. I will say that this disease and all we have been through with it has brought my immediate household closer.
This last March I began to feel a "switch", something positively different. I was on Zithromycin and Flagyl and many supplements. I felt I was a bit more functionable but at the same time other things starting going hay wire. I began losing weight, my hair was falling out by hand fulls, I was losing my hearing, and my vision in my right eye was getting progressively worse, to just name a few. I new these things weren't "normal" or good but I figured I was more functional so maybe it was all in my head just how bad it was.
In June, after having put up with "bucket head" symptom for a year and it had gotten so bad, I decided to see my ENT that I love and that has stood by me since 1999. This is when I found out I was losing hearing. He was very concerned and felt it was the Zithromycin and wanted me in to see my lyme doctor ASAP. We researched Zithromycin and did read where it can cause ototoxicity. We scheduled an appointment with the lyme doctor and had a battle plan of what antibiotics we would talk to her about switching to. We never got the chance. She saw the weight loss (at that time 117) and she flipped and pulled me completely off treatment and this is after she had always said she would never pull treatment in fear it would cause me to back slide. She sent me to a GI specialist. Tests were ran and they revealed that my esophagus was so inflamed she stated she didn't know how I was able to get water down. I was then at that point, taken off all oral meds. Within weeks of being off all oral medications my lyme symptoms began coming back. I emailed the lyme doctor and pleaded with her, not knowing how long it would take for the esophagus to heal (resulting in a new diet of no meat or dairy...only soft foods...I've lost count what number of diet this is), to revisit starting treatment back up, only parentarily (IV). She agreed and after being off of treatment for 3 weeks I started treatment back up in the infusion lab through IV, 3 times a week receiving Rocephin and also vitamin C for immune support since I couldn't take any of my supplements for immune support. I did notice a different in getting off of all the supplements. I do believe in the beginning they were helpful but towards this point they had become more toxic to the system (I was taking 15-20 pills a day...thus the esophagus). The digestive system was trashed and probably not absorbing much if at all what I was taking. Some of the medications, like my migraine preventative, are supposed to be slowly decreased and I cold turkey quit. I saw no side effects....again, probably because I wasn't absorbing the full doses.
The first day back on treatment it only took the nurse 2 sticks. The veins have been through a lot in the last 20+ months. However, the second day of treatment she stuck me 4 times and couldn't get a single vein. They would just blow. At this point, frustrated because I'm wanting my treatment, the nurse contacts the doctors office and goes to bat for me on a PIC line. In thinking through this, I have had a midline and a PIC (which did not go well at all). I had been down those roads. Since we didn't know how much longer I would be fighting Lyme, nor how long it would take the esophagus to heal, I emailed the doctor and pleaded my case for a PORT. I was told she never agrees to them via email so I had planned to be in her office the very next morning first thing. To my surprise she agreed.
This was all the week before I was scheduled to fly out to see my grandmother. So, I was hoping it could be done the next day, Friday, have the weekend to heal, and possibly fly out. Nope! I had to see a surgeon for consultation before it could even be scheduled. This consultation took all day Friday with more tests and the procedure was scheduled for Monday...the Monday before the Wednesday I was to fly out. The procedure, which is another whole blog in itself, went well, but being a surgical procedure where they implant a device in your chest that has a catheter that leads to the heart, has two incisions. I had my first treatment with it that day, and also saw my GI who ordered an MRI of my bile duct in which they refused to use the PORT for the dye.
It is difficult to put into words what May through now has been like. The above is just a sampling. It was always something we had to fight through, or another doctor to see. The summer was spent traveling from one doctor to the next. Things kept changing weekly, sometimes more then that. There's no way to capture it all on paper.
I rescheduled my flight because with the new PORT was more dependent on others and wasn't good for anything. A week made a big difference and with some assistance I was able to fly out to see my grandmother. I found it interesting that to get any kind of help at the airport I had to sit in a wheel chair. But I complied,...when you are in discomfort and unable to do things, sometimes you don't have a choice.
After about 4 weeks of treatment through the PORT my cd-57 went up to 55, the highest it has ever been (180 is our goal). I truely believe its because we are doing treatment through the PORT which goes straight to the heart and the vitamin C has also played a part. If you read up on vitamin C done intravaneously it is used for cancer patients to help with detoxing as well as other things (you won't find Lyme mentioned....some day you will). After the first 4 weeks, there was a week off of treatment and I went down hill. The little energy I had and functionality declined greatly. We went in and begged for another 4 weeks.
Two weeks ago we scheduled another appointment after being on treatment now for 8 weeks with the PORT to ask questions. I had this nagging feeling (aka God) that if we needed to do treatment five days a week for a month and then take two weeks off . The two weeks off was my idea just to appease the doctor who keeps threatening to take me off treatment to give the digestive system a break. Um, hello, why would I want to take a "break" when numbers are finally going in the right direction? Remember the last time she took me off treatment? My lyme symptoms came back and they continue to worsen with each day. So, we went in to do battle again. I also had questions and other "suggestions". I was so afraid I wouldn't remember them and think clearly and I was afraid to present my ideas because I didn't think she would go for them. I so dislike that I, the sick one, have to be the one on my toes and know what to ask or it feels nothing happens. The doctor came in and God took over. I had this clear mind accompanied by boldness and I remember my questions (Chris couldn't keep up with them on his phone) and just went "bam" "bam". When I mentioned doing treatment five days a week she shook her head no. I asked why we don't test the lyme test through iGenex, the most sensitive lab (I knew the answer but wanted to put it out there) and she said because insurance doesn't cover it but said she would run it this time through iGenex. I had also pointed out that we had always been doing at least two antibiotics and should we be doing two now. Her answer was no. Chris began to ask if we are doing everything possible and I mentioned that I was even willing to try Vancomycin, a medication I reacted to when I was in labor/delivery with Maddie (?) and have been labeled as allergic to, but its the best antibiotic in fighting Lyme. I, being a good lawyer, pleaded my case that I'm under supervision in the infusion lab and if anything happened I was in good hands. She agreed! Ha! So, we leave to go do an infusion using the Vancomycin. I sent word out to my prayer warriors to pray that I would tolerate it. We get to the infusion lab and come to find out she not only put Vancomycin with vitamin C, but left on the Rocephin and prescribed it five days a week. Unbelievable! Everything I asked/addressed she did.
I got through 3/4 the bag of vancomycin and began to itch like crazy. I was so happy that I got through that much. I was given benedryl through my PORT (nasty!!!) and had to stop the infusion. Within about 10 minutes I was in the public bathroom sick to my stomach and doubled over for over an hour before I could get up and walk out. Afraid it was the vancomycin I didn't tell anyone and prayed the whole time that no one would walk in and find me doubled over on the floor. I knew they would call 911 and my vancomycin would be taken away. I prayed and prayed and got through it.
So, for the last two weeks I have come every day to do my infusion which takes about 4 hours. The last two weeks the girls would come with me and we would do school here at infusion most days or I would come in the afternoon with Becka and she would finish school here. Last Friday, I fell apart. I think the two weeks of dragging everything and everyone to infusion and sitting here for 4 hours trying to do school wore on me. After my infusions I am zapped!!
Yesterday, I came by myself (first time) while Chris stayed at home and did school with the girls to try to relieve the stress and when I woke up toward the end of infusion my IV was dripping super fast and I was itching. I was given benedryl again through my PORT and again I ended up sick to my stomach and doubled over for an hour. It was as bad as the first time but still pretty bad. The other option is a drug called Decatron which is steroidal which is not good for Lyme.
After 8 weeks of doing treatment through the PORT my cd-57 is up to 142. We are still waiting to hear from iGenex. So much will be determined off of that test. If there are NO bands present on the iGenex test, this will probably be my last month of antibiotics. If there are bands present then we will probably continue treatment. The only concern I have is that my cd-57 is up and if the iGenex comes back completely negative and we still have all the lyme symptoms. I have felt that I have slowly degressed back to where I was before we started treatment.
My computer is dying so I need to stop. I hope for my fellow Lymies this is helpful in some proportion. I have learned so much just in talking with other Lyme patients here in the infusion lab. I now know more people with Lyme then I do with cancer. It blows me away.
