Friday, February 25, 2011
Lyme in the Brain
This post isn't very exciting or happy for that matter. It is one that I need to write however just to get rid of some of the junk floating around inside of me. It is also one that I will wonder if I should even make public. I realize though that one you have a choice to read this and second it is the truth. This is my reality and the reality for a lot of other lymies. It wasn't until more recently that I really began to understand how much this disease can and does mess with your head. Besides the forgetfulness, ADD and brainfog type symptoms it really can begin to mess with your emotions and feelings. I realize now when people close to me have commented on how I have changed..."You never used to be so impatient" or "You always used to be happy and now you never seem to be happy" that the lyme disease has gotten to my brain. I know it must be easy from the outside looking in to think that I am blaming everything on lyme. Well is some ways I am but it is only because that is the reality of this disease. It can get to every organ, tissue and system in your body. Nothing is off limits. I have had some really rough times as a mom feeling so guilty and ashamed for my outbursts and yelling at my kids. I could never understand where these frustrated feelings would come from. It is a very real feeling that builds up inside of me so quickly and I just lose it. I have done it over the phone to credit card people, in the Verizon store, at my husband. I have embarrassed him on at least a few occasions for losing my temper. It is a very out of control feeling. After learning more about this disease and hearing from other lyme patients I realize that those episodes were what is known as Lyme Rage. I haven't had it nearly as much but in the last week or two it has come creeping back. I would just rather not be around anyone for fear they may push my buttons. On top of this and it seems most often when I am in this state of mind I am most prone to depression. I do not believe I will need to take medication for this. I just need to get rid of the lyme. However, if you have never been depressed, it can be a very dark place. These are the moments when I have literally fallen on the floor, sobbing and screaming at God to fix this, to take me out of the pit I am in because I didn't know what would happen if it went any further. I am so thankful God has rescued me each time. Then I get to this place where I almost feel nothing. That happened this morning. I couldn't figure out what to do. I needed to go the store but I needed to figure out if I even had money to get what I needed or I guess wanted. I wanted to get a coffee but knew I shouldn't spend my last few bucks on that. I ended up sitting in my truck in a parking lot listening to the radio unable to make a decision on anything. I eventually ended up back at home without spending a penny. I just can't seem to make up my mind about simple things and everything becomes a big deal. I need to eat but I am not really hungry and nothing sounds good so it would be easier to just avoid that. But if I don't eat I can't take me medicine which means I am prolonging getting better. It just becomes almost anxiety producing to have to think about anything. I would rather just stay in bed under the covers until this passes. Not the way my life works. It is very hard to explain this to someone including my husband. I think most people with this disease or even people with depression would tell you it is very hard to explain. It is not just a matter of getting over it, thinking positive and it will all be okay. Very aggravating and something I hope has big improvements when I am all done with this and that any phases of this that I experience while I am getting better will be short. Just know that in this state of mind everything around me is very overwhelming and don't expect me to make a decision on anything. With that being said, I really don't want to discuss it but will just ask for a little understanding and a lot prayers. Thanks.
Tuesday, February 22, 2011
I Spoke To Soon
Some of my lyme friends have had a really hard time lately. They seem to be lapsing or just having really bad herxes. In fact my one friend ended up in the ER after having a seizure and losing consciousness. To read her account of what happend is downright scary. In typical lyme fashion, once in the ER they can't find anything wrong with her. Blood work looks good, PICC line looks fine, EKG is good. So frustrating as you are left guessing what your problem is. I have probably told this story before but I will tell it again...Shortly before I got diagnosed with lyme, I had a really scary episode. I got up to get ready for work. Luckily my husband was home at that time. I got in the shower and actually wasn't feeling too bad. I think I may have even slept good the night before. A few minutes into my shower I got this really strange feeling and I almost passed out. Thankfully I didn't and was able to get out of the shower. I remember sitting down and calling for my husband. I just said I don't know whats wrong with me. I almost passed out and I don't feel right. I couldn't even describe how I felt other than not right and it was scary. I was so close to calling 911. Of course I was living in the city I work in and didn't want my "guys" at the FD to have to take me to the hospital again. That already happened once when my heart rate was cranking. We had had a stress test earlier that day and my heart rate shot up to 272. Yes...that is correct 272. I even have the print out to prove it. A few hours later my heart was at 150. I was sitting at my desk. So I had to go to the station and get checked out. Not fun when you work with these guys on a regular basis. They said sorry, you gotta go. In both of those events, I had a CT to make sure I didn't have a pulmonary embolism. All blood work came back normal and they had to send me home with no idea what was wrong with me. Talk about feeling like you are crazy!
After reading so much about my what my friends and other lyme patients have gone through, I just said to my family how blessed I feel that I haven't had a seizure or anything. In fact, I said, it is weird with as sick as all my doctors say I am, and all my tests show I am, my symptoms although bad have not been as serious as some other people. I don't know if that means we are treating things just with the right amount or that we aren't getting to the bugs like we should. Hopefully this new blood test will tell. (Unfortunately, they ran out of kits and I have to wait until next Tuesday to have it done. I was bummed.) I am wondering if I spoke to soon. I went to my usual Tuesday appointment this morning to have my port accessed and first IV done. I ate something and was drinking plenty so my anticipated blood test would go off with no problems. Well God must of known what was coming because if I would have had my blood test first I think things would have gone worse. The nurse came in and hooked me up as my doctor was out of town. She actually checked my blood pressure ahead of time which we usually don't do but it was normal. We opened up the IV the same as we always do. It seemed like a matter of seconds and I started to not feel good. I got really warm, lightheaded and dizzy. I was sitting down and pushed my stuff out of the way cause I thought I was going to have lay down so I didn't pass out. The problem when I feel like this is no position makes me feel better. I still feel like I might black out even if I am laying down. The nurse came back in and I just said I am not doing good. I was powering down my water so she brought me some more and told me to just sit. Our guess is that I didn't like the magnesium in my IV this morning. It was just to much to quick. Horrible feeling though. My heart was pounding so I checked my heart rate with an app I have on my phone. That didn't help as it was jumping all over. I usually have luck with this app and it seems to be right on. This time it was going anywhere between 92 and 200. Well that wasn't helping me relax. I had the nurse check it and it seemed okay to her. I finally started to feel better. Made it home okay and ate some more. I have drinking lots. I definitely seem to be herxing today as I have had some joint and bone pain and just don't feel good. I am hoping I feel okay later because it is Jenna's first softball game ever and I certainly don't want to miss it. I am a little nervous because I have been really bad about taking some liquid supplements. I told myself I have to get really back on track with not missing a thing but I decided I need to take this supplement slow like I did in the beginning. I think it helps bring the bugs out of hiding and I haven't really taken it since I have been on my IV. If that is the case, I may start killing a lot more bugs which means I will feel way worse. So I will take it slow and do everything I need to do. I just have to say that dealing with this disease really is a full time job and my life doesn't allow me or many other people to do nothing but deal with this. I still need to try and get the kids up and ready for school. If I stopped doing everything things would get so much more difficult for my family but I am realizing I need to cut back. I am really going to try and focus on my diet, meds, and things to help detox. Plus a lot of prayer and time in the Bible. We will see where things go but I am praying I don't go where I did this morning again. With that I am off to try and nap...wish me luck. I couldn't sleep last night.
After reading so much about my what my friends and other lyme patients have gone through, I just said to my family how blessed I feel that I haven't had a seizure or anything. In fact, I said, it is weird with as sick as all my doctors say I am, and all my tests show I am, my symptoms although bad have not been as serious as some other people. I don't know if that means we are treating things just with the right amount or that we aren't getting to the bugs like we should. Hopefully this new blood test will tell. (Unfortunately, they ran out of kits and I have to wait until next Tuesday to have it done. I was bummed.) I am wondering if I spoke to soon. I went to my usual Tuesday appointment this morning to have my port accessed and first IV done. I ate something and was drinking plenty so my anticipated blood test would go off with no problems. Well God must of known what was coming because if I would have had my blood test first I think things would have gone worse. The nurse came in and hooked me up as my doctor was out of town. She actually checked my blood pressure ahead of time which we usually don't do but it was normal. We opened up the IV the same as we always do. It seemed like a matter of seconds and I started to not feel good. I got really warm, lightheaded and dizzy. I was sitting down and pushed my stuff out of the way cause I thought I was going to have lay down so I didn't pass out. The problem when I feel like this is no position makes me feel better. I still feel like I might black out even if I am laying down. The nurse came back in and I just said I am not doing good. I was powering down my water so she brought me some more and told me to just sit. Our guess is that I didn't like the magnesium in my IV this morning. It was just to much to quick. Horrible feeling though. My heart was pounding so I checked my heart rate with an app I have on my phone. That didn't help as it was jumping all over. I usually have luck with this app and it seems to be right on. This time it was going anywhere between 92 and 200. Well that wasn't helping me relax. I had the nurse check it and it seemed okay to her. I finally started to feel better. Made it home okay and ate some more. I have drinking lots. I definitely seem to be herxing today as I have had some joint and bone pain and just don't feel good. I am hoping I feel okay later because it is Jenna's first softball game ever and I certainly don't want to miss it. I am a little nervous because I have been really bad about taking some liquid supplements. I told myself I have to get really back on track with not missing a thing but I decided I need to take this supplement slow like I did in the beginning. I think it helps bring the bugs out of hiding and I haven't really taken it since I have been on my IV. If that is the case, I may start killing a lot more bugs which means I will feel way worse. So I will take it slow and do everything I need to do. I just have to say that dealing with this disease really is a full time job and my life doesn't allow me or many other people to do nothing but deal with this. I still need to try and get the kids up and ready for school. If I stopped doing everything things would get so much more difficult for my family but I am realizing I need to cut back. I am really going to try and focus on my diet, meds, and things to help detox. Plus a lot of prayer and time in the Bible. We will see where things go but I am praying I don't go where I did this morning again. With that I am off to try and nap...wish me luck. I couldn't sleep last night.
Saturday, February 19, 2011
Time for change
This is the second time that I have attempted a post in the last week. I just don't feel mentally together. I have a lot I would like to say, a lot of thoughts and emotions I want to get out but it seems to be a little difficult right now. We will see how far I get with this attempt.
To start, my treatment continues with no real changes. No changes in the treatment it self and no real changes in how I feel. I can say that on my good days I feel tired. On my bad days, well that could be anything. I had a really bad episode the other night. I got the strange weak feeling I usually get when I am going to start twitching. Instead of twitching or jerking a bunch I would involuntarily contract a muscle or group of muscles and not be able to release them. Does that make sense? These episodes can cause me to hold my breath, which can be a little scary. My arms became kind of useless as I grabbed the dining room chair and couldn't really let go of it. I also lost my ability to speak. I can hear my family talking and understand what they are saying but I can't make the words come out of my mouth. I also can't make my body move the way I want it to. I ended up at the dinner table with a slight tremor, holding onto the chair, unable to talk and unable to feed myself. It is sad that my 4 yr old is feeding me my dinner because I am unable to do so. I ended up at the table alone and had to crawl across the floor when I was done because I couldn't ask for help and I couldn't walk. Shorter lived than some other episodes but probably one of the most intense. I can tell my neurological symptoms have gotten worse. I am having trouble spelling and sometimes using the wrong words. For the most part I can recognize when a word doesn't look right but I don't know how to fix it. That happened with the word "attach". I had is spelled attache. I looked at it and knew that didn't seem right but I had to ask my husband how to spell it correctly.
I am going forward with a new form of testing for Lyme and all of the co-infections this coming Tuesday. My doctor likes it better than the existing testing. It is really expensive, but less than the original testing I went through. It is called Spirostat. I think the best way I can explain it is, it looks for DNA of the bacteria or parasite instead of looking for antibodies you developed after an exposure. It is supposed to be really good. So I am excited about that. I also just did another bunch of blood work I should have the results on soon. We will see where all of this leads.
I have so much I want to say about money and stuff and what important in life but I just can't find the right words. I just want to share from my heart and tell you about some of what we have gone through and give you some things to think about it. Whenever I start to write about it though, it comes out like a major lecture. Let me just say that we are so devastated financially. We are at the point where I can't go get a Starbucks or we can't drive through McDonalds or we may not be able to let the girls go to birthday parties because of money. I just want you to think about your situation and if you could survive more than a month or two with a loss of income from you or your spouse. I think there are very few people prepared to face these situations. We are spoiled more than I have ever wanted to admit. Although, we aren't financially rich so to speak if I wanted a mocha or was to tired to cook dinner do big deal. How would handle having those things taken away from you. Cutting back is one thing, we are really having to look at changing a whole lot in our life. I know a lot of people, not just lymies, have to face a situation like this (especially in this economy) but wow is it harder than I thought. I am trying to be creative and just make sure we are making the best choices possible. I am putting everything I can on craigslist to make a few bucks. I don't want to put groceries on credit cards. We aren't even to the point of having to pay for my IV's yet. Things are only going to get tighter. It is just a reminder of how unimportant "stuff"is but it can be a big shock when you aren't used to having to live this tight. Just please look at your situation, and think about how well you and your family would adapt if you had to go through this. I pray none of you do, it is harder than you think. Sorry for the sob story. It didn't come out exactly the way I wanted it to, but it is the truth.
That leads me to another point. I am working on changing up our families diet. This is based on a book my doctor wanted me to read. The short version is you eat all the eggs, meat, veggies and fruit you want. Dairy is supposed to be limited and you are not supposed to have the grains, sugars, etc...Now I can't cut the whole grains and carbs completely but we are trying a modified version of it. The problem comes in when you are faced with such a financial problem. The doctors want you to go organic and healthy which can be hard to do on a tight budget. Mac and cheese, cup o noodles, and some of that gets really cheap but is so bad for you. So I am trying to find the balance between the two. The few weeks we jumped into the diet weren't too bad. I am finding some good deals on meat (can be any kind) and going for fresh fruits and veggies. Trying to go with whatever is sale. It will take a little time to get it worked out but I am hoping we can get there. The basic premise behind this diet has to do with the fact that blood sugar issues are the real cause of most or all of our major health issues not the fat and cholesterol like we are taught. If we go back to "cave man" style of hunting and gathering we will better off. The issue with grains is that they are highly inflammatory for most people and didn't really come into our diets until later. So anyways...I will try and keep you updated about how the diet is going for the family.
So I guess that is it for now. Kind of feel like Dory from Nemo right now-"Just keep swimming. Just keep swimming. Just keep swimming, swimming..." Thats all I can do is just keep swimming and trusting God.
To start, my treatment continues with no real changes. No changes in the treatment it self and no real changes in how I feel. I can say that on my good days I feel tired. On my bad days, well that could be anything. I had a really bad episode the other night. I got the strange weak feeling I usually get when I am going to start twitching. Instead of twitching or jerking a bunch I would involuntarily contract a muscle or group of muscles and not be able to release them. Does that make sense? These episodes can cause me to hold my breath, which can be a little scary. My arms became kind of useless as I grabbed the dining room chair and couldn't really let go of it. I also lost my ability to speak. I can hear my family talking and understand what they are saying but I can't make the words come out of my mouth. I also can't make my body move the way I want it to. I ended up at the dinner table with a slight tremor, holding onto the chair, unable to talk and unable to feed myself. It is sad that my 4 yr old is feeding me my dinner because I am unable to do so. I ended up at the table alone and had to crawl across the floor when I was done because I couldn't ask for help and I couldn't walk. Shorter lived than some other episodes but probably one of the most intense. I can tell my neurological symptoms have gotten worse. I am having trouble spelling and sometimes using the wrong words. For the most part I can recognize when a word doesn't look right but I don't know how to fix it. That happened with the word "attach". I had is spelled attache. I looked at it and knew that didn't seem right but I had to ask my husband how to spell it correctly.
I am going forward with a new form of testing for Lyme and all of the co-infections this coming Tuesday. My doctor likes it better than the existing testing. It is really expensive, but less than the original testing I went through. It is called Spirostat. I think the best way I can explain it is, it looks for DNA of the bacteria or parasite instead of looking for antibodies you developed after an exposure. It is supposed to be really good. So I am excited about that. I also just did another bunch of blood work I should have the results on soon. We will see where all of this leads.
I have so much I want to say about money and stuff and what important in life but I just can't find the right words. I just want to share from my heart and tell you about some of what we have gone through and give you some things to think about it. Whenever I start to write about it though, it comes out like a major lecture. Let me just say that we are so devastated financially. We are at the point where I can't go get a Starbucks or we can't drive through McDonalds or we may not be able to let the girls go to birthday parties because of money. I just want you to think about your situation and if you could survive more than a month or two with a loss of income from you or your spouse. I think there are very few people prepared to face these situations. We are spoiled more than I have ever wanted to admit. Although, we aren't financially rich so to speak if I wanted a mocha or was to tired to cook dinner do big deal. How would handle having those things taken away from you. Cutting back is one thing, we are really having to look at changing a whole lot in our life. I know a lot of people, not just lymies, have to face a situation like this (especially in this economy) but wow is it harder than I thought. I am trying to be creative and just make sure we are making the best choices possible. I am putting everything I can on craigslist to make a few bucks. I don't want to put groceries on credit cards. We aren't even to the point of having to pay for my IV's yet. Things are only going to get tighter. It is just a reminder of how unimportant "stuff"is but it can be a big shock when you aren't used to having to live this tight. Just please look at your situation, and think about how well you and your family would adapt if you had to go through this. I pray none of you do, it is harder than you think. Sorry for the sob story. It didn't come out exactly the way I wanted it to, but it is the truth.
That leads me to another point. I am working on changing up our families diet. This is based on a book my doctor wanted me to read. The short version is you eat all the eggs, meat, veggies and fruit you want. Dairy is supposed to be limited and you are not supposed to have the grains, sugars, etc...Now I can't cut the whole grains and carbs completely but we are trying a modified version of it. The problem comes in when you are faced with such a financial problem. The doctors want you to go organic and healthy which can be hard to do on a tight budget. Mac and cheese, cup o noodles, and some of that gets really cheap but is so bad for you. So I am trying to find the balance between the two. The few weeks we jumped into the diet weren't too bad. I am finding some good deals on meat (can be any kind) and going for fresh fruits and veggies. Trying to go with whatever is sale. It will take a little time to get it worked out but I am hoping we can get there. The basic premise behind this diet has to do with the fact that blood sugar issues are the real cause of most or all of our major health issues not the fat and cholesterol like we are taught. If we go back to "cave man" style of hunting and gathering we will better off. The issue with grains is that they are highly inflammatory for most people and didn't really come into our diets until later. So anyways...I will try and keep you updated about how the diet is going for the family.
So I guess that is it for now. Kind of feel like Dory from Nemo right now-"Just keep swimming. Just keep swimming. Just keep swimming, swimming..." Thats all I can do is just keep swimming and trusting God.
Tuesday, February 8, 2011
Just Because
I was having a fire...Okay. I will just stop right there. I don't know where the word fire came from. I was trying to write that I was having a hard time coming up with a title for this post. My daughter came into to talk to me and that is what I had typed. So I guess just be ready for this post to be full of screw ups and hopefully you will still be able to figure out what I am trying to say. I titled this post Just Because for exactly that reason. My creative juices have to seem to have left me for now, my brain is a mess, and I am writing just because...Just because I haven't updated in a while and I want too but I guess I was just waiting for something big to happen or something exciting to tell you about. I guess now that the disability thing is said and done I have kind of felt like there is nothing left. I realize that is not true. This blog is not about disability this blog is about my life. And not just my life, but my life and how dealing with Chronic Lyme Disease affects my life. So with that being said, I am going to do my best to give you an update and get back on track with my blog.
I have a lot going with everything right now. I am settling into the routine of my IV's, dealing with work, dealing with kids and sport and school, and I guess everything else people deal with on a regular basis. As far as my IV's go, things are moving along fairly smoothly. I go to my doctor every Tuesday where he accesses Donald. That is done with a specialized needle that has some connection tubing for my IV attached to it. Once accessed the needle is covered with Tegaderm, which is just a big clear bandage, to hold it in place. He gives me all of my supplies to do the other 7 IV's at home and off I go. The needle set up is kind of big, it sticks out of my chest about an inch or so. You can't miss it. It is always a little sore after it is accessed but not to bad. I am limited with how I can sleep with it in and I can't shower with it in. Starting Tuesday night, my husband does my IV's the rest of the week. The whole process of mixing meds, infusing, flushing takes 20 to 30 minutes so it is not too bad. I do have to get up early so he can do it before he goes to work. I would have to give myself credit as being a great wife for the fact I got up at 5:00 one morning so he could do my meds before he went on a dawn surf at Blacks. I have had some herxes with this medication. Although I have had some people say some of my symptoms could be side effects of the Actigall which I take to prevent the side effect of gallstones that the IV Rocephin can cause. For the most part the symptoms have been heart and breathing related. The two things I don't like dealing with. I did have one really weird episode that is hard to describe with just not feeling right. It completely freaked me out. Then I had one day of muscle aches that started and got worse but luckily only lasted one day. For me, that day of muscle aches was significant because it was very similar to a bout of severe muscle aches about two years ago or so. It was a few weeks after I did the Breast Cancer 3 Day. I woke up one morning and my right quad hurt. Then my calf then my left side then my biceps, abs and finally settling in my forearms. I am not talking about just general aches. This was like I had gone to the gym and did a crazy workout and my muscles hurt in very specific spots. I ended up in Urgent Care the pain was so bad and had no known reason. Over the course of a few days it got to the point I lost all my strength in my arms. I couldn't write or even squeeze the toothpaste out of the tube. That is what really set my quest to find out what was wrong with me in motion. The only thing the doctors could say was it must have been a virus. Since that episode I started having episodes of numbness, pain, creepy crawly feeling in my arms, nerve pain in lots of places. Those issues finally got me sent to the Neurologist for an MRI. That is when I was diagnosed (although the doctor never told me, he just put it in his notes) that I most likely had Fibromyalgia. I was also told it was anxiety related and I was prescribed Xanax. Ya, that is going to take all of those feelings away. Sorry to get a little of track.
As best as I can tell it is working. My doctor is expecting the routine of twice a day, four days a week to continue for next 4 months minimum. That brings up the discussion with work which I will get to in a minute. I have a bunch of blood work I need to do for the doctor which is fairly routine. He also said he would really like me to do a different type of co-infection test that checks for co-infection DNA instead of anti-bodies. My doctors two oldest daughters have Lyme and he just did this test on at least one of them. She is in the same boat as me as far as Babesia goes. We both had negative blood tests for Babesia but have symptoms and are both being treated by the medication Mepron. This is the medication this is bright yellow and the consistency of tempura paint. It is also about $1750 a month if the insurance doesn't cover it. So his daughter and I have both been on it about 4 months. He tested his daughter with this other test and she is positive. That means the treatment for that doesn't get to stop when you would usually stop after 4 months. So he is really encouraging me to do it. The downside...the $600 price tag that insurance won't cover. Again, sometimes I wonder why I even have insurance. So I guess we will work that into the plan in the next few weeks. We also still need to work on getting my girls tested. Other than that, at this point, no other part of my treatment gets to change. Still on about 30 pills a day and my gut is really starting to check out. Can't remember if I mentioned last time or not but my CD-57 numbers have dropped a little more...I'm at 33. One we go, I guess.
Now to work and money, money and work. I wish the two were not so intertwined but they are. As I said earlier, I will be on the IV for a minimum of 4 months. My gut feeling is it will be closer to the 6 to 8 months or longer. With that being said, I was asked to talk with my doctor about my return to work. My current approval to be off runs out I think this week. There is still some time the city can work with but I was really thinking I was going to extend my time off by a month or 6 weeks. Then I would come back part time and work back up to full time. When I talked to the doctor last week, I was surprised by his answer to say the least. You can not go back to work at all while the port is in. It was obvious this was not open for discussion. Well okay then. Let me just say that this puts me in a very awkward position. The City is doing what they can but they can't hold out forever. I can say without a doubt I feel that my job is in jeopardy at this point. It is not any ones fault. It is just the way things go. I have decided that it would be unfair to request the use of this catastrophic leave policy where employees can donate sick and vacation time to me because my return is uncertain. Once that time has been donated there is no way to pay it back. If for some reason I can't come back to work it would kill me to have had people donate time to me. My husband is so understanding. Financially this decision sucks but he knows it would tear me up inside. That is about all I feel comfortable saying about work. It is really up in the air and I am afraid I may be forced to walk away. Only God knows at this point. There is nothing I can do to change the out come. It is out of my hands.
Of course the disability denial and this new turn on when I can go back to work really play havoc on the already tight finances. I guess I am really falling in line with a majority of the Lymies out there. This disease takes you for all you are worth and then some. I guess it is just a bummer that when we are stretched over the max, the numbers coming in and going out don't match, that we are running into the time when insurance is probably going to pull the plug on coverage. Between myself and my girls we have about $1200 worth of testing that needs to happen and my IV's will start running us about $200 a week. As God has come through before I have to rely that He will come through again. Money is tight for a majority of people so I feel like I am limited in what I can do to try and raise money to help pay for things. Some tough decisions and lots of prayer lie ahead. I know I have mentioned this before, but I can not tell you how probably 99% of the Lymies I have met are hard core Christians. I mean loud about their faith. Again I will tell you if it wasn't for my faith I would have quit a long time ago. I have my moments still, but with out God this situation would look hopeless. There is no way around it. God must have big things planned and I think I still have things to learn. If I would have gotten all of the lessons He had for me, this disease would be gone by now.
I'm to the point now where I am losing my train of thought a little. I think I probably have more to say can't quite figure it out. I have had some scary brain lapses recently so I don't want to push it. It feels really good to have gotten a lot of this off of my chest and out of my head. I'm sure I'll have more to ramble about soon. I appreciate you reading this and I certainly welcome your comments and questions. Have a good night.
I have a lot going with everything right now. I am settling into the routine of my IV's, dealing with work, dealing with kids and sport and school, and I guess everything else people deal with on a regular basis. As far as my IV's go, things are moving along fairly smoothly. I go to my doctor every Tuesday where he accesses Donald. That is done with a specialized needle that has some connection tubing for my IV attached to it. Once accessed the needle is covered with Tegaderm, which is just a big clear bandage, to hold it in place. He gives me all of my supplies to do the other 7 IV's at home and off I go. The needle set up is kind of big, it sticks out of my chest about an inch or so. You can't miss it. It is always a little sore after it is accessed but not to bad. I am limited with how I can sleep with it in and I can't shower with it in. Starting Tuesday night, my husband does my IV's the rest of the week. The whole process of mixing meds, infusing, flushing takes 20 to 30 minutes so it is not too bad. I do have to get up early so he can do it before he goes to work. I would have to give myself credit as being a great wife for the fact I got up at 5:00 one morning so he could do my meds before he went on a dawn surf at Blacks. I have had some herxes with this medication. Although I have had some people say some of my symptoms could be side effects of the Actigall which I take to prevent the side effect of gallstones that the IV Rocephin can cause. For the most part the symptoms have been heart and breathing related. The two things I don't like dealing with. I did have one really weird episode that is hard to describe with just not feeling right. It completely freaked me out. Then I had one day of muscle aches that started and got worse but luckily only lasted one day. For me, that day of muscle aches was significant because it was very similar to a bout of severe muscle aches about two years ago or so. It was a few weeks after I did the Breast Cancer 3 Day. I woke up one morning and my right quad hurt. Then my calf then my left side then my biceps, abs and finally settling in my forearms. I am not talking about just general aches. This was like I had gone to the gym and did a crazy workout and my muscles hurt in very specific spots. I ended up in Urgent Care the pain was so bad and had no known reason. Over the course of a few days it got to the point I lost all my strength in my arms. I couldn't write or even squeeze the toothpaste out of the tube. That is what really set my quest to find out what was wrong with me in motion. The only thing the doctors could say was it must have been a virus. Since that episode I started having episodes of numbness, pain, creepy crawly feeling in my arms, nerve pain in lots of places. Those issues finally got me sent to the Neurologist for an MRI. That is when I was diagnosed (although the doctor never told me, he just put it in his notes) that I most likely had Fibromyalgia. I was also told it was anxiety related and I was prescribed Xanax. Ya, that is going to take all of those feelings away. Sorry to get a little of track.
As best as I can tell it is working. My doctor is expecting the routine of twice a day, four days a week to continue for next 4 months minimum. That brings up the discussion with work which I will get to in a minute. I have a bunch of blood work I need to do for the doctor which is fairly routine. He also said he would really like me to do a different type of co-infection test that checks for co-infection DNA instead of anti-bodies. My doctors two oldest daughters have Lyme and he just did this test on at least one of them. She is in the same boat as me as far as Babesia goes. We both had negative blood tests for Babesia but have symptoms and are both being treated by the medication Mepron. This is the medication this is bright yellow and the consistency of tempura paint. It is also about $1750 a month if the insurance doesn't cover it. So his daughter and I have both been on it about 4 months. He tested his daughter with this other test and she is positive. That means the treatment for that doesn't get to stop when you would usually stop after 4 months. So he is really encouraging me to do it. The downside...the $600 price tag that insurance won't cover. Again, sometimes I wonder why I even have insurance. So I guess we will work that into the plan in the next few weeks. We also still need to work on getting my girls tested. Other than that, at this point, no other part of my treatment gets to change. Still on about 30 pills a day and my gut is really starting to check out. Can't remember if I mentioned last time or not but my CD-57 numbers have dropped a little more...I'm at 33. One we go, I guess.
Now to work and money, money and work. I wish the two were not so intertwined but they are. As I said earlier, I will be on the IV for a minimum of 4 months. My gut feeling is it will be closer to the 6 to 8 months or longer. With that being said, I was asked to talk with my doctor about my return to work. My current approval to be off runs out I think this week. There is still some time the city can work with but I was really thinking I was going to extend my time off by a month or 6 weeks. Then I would come back part time and work back up to full time. When I talked to the doctor last week, I was surprised by his answer to say the least. You can not go back to work at all while the port is in. It was obvious this was not open for discussion. Well okay then. Let me just say that this puts me in a very awkward position. The City is doing what they can but they can't hold out forever. I can say without a doubt I feel that my job is in jeopardy at this point. It is not any ones fault. It is just the way things go. I have decided that it would be unfair to request the use of this catastrophic leave policy where employees can donate sick and vacation time to me because my return is uncertain. Once that time has been donated there is no way to pay it back. If for some reason I can't come back to work it would kill me to have had people donate time to me. My husband is so understanding. Financially this decision sucks but he knows it would tear me up inside. That is about all I feel comfortable saying about work. It is really up in the air and I am afraid I may be forced to walk away. Only God knows at this point. There is nothing I can do to change the out come. It is out of my hands.
Of course the disability denial and this new turn on when I can go back to work really play havoc on the already tight finances. I guess I am really falling in line with a majority of the Lymies out there. This disease takes you for all you are worth and then some. I guess it is just a bummer that when we are stretched over the max, the numbers coming in and going out don't match, that we are running into the time when insurance is probably going to pull the plug on coverage. Between myself and my girls we have about $1200 worth of testing that needs to happen and my IV's will start running us about $200 a week. As God has come through before I have to rely that He will come through again. Money is tight for a majority of people so I feel like I am limited in what I can do to try and raise money to help pay for things. Some tough decisions and lots of prayer lie ahead. I know I have mentioned this before, but I can not tell you how probably 99% of the Lymies I have met are hard core Christians. I mean loud about their faith. Again I will tell you if it wasn't for my faith I would have quit a long time ago. I have my moments still, but with out God this situation would look hopeless. There is no way around it. God must have big things planned and I think I still have things to learn. If I would have gotten all of the lessons He had for me, this disease would be gone by now.
I'm to the point now where I am losing my train of thought a little. I think I probably have more to say can't quite figure it out. I have had some scary brain lapses recently so I don't want to push it. It feels really good to have gotten a lot of this off of my chest and out of my head. I'm sure I'll have more to ramble about soon. I appreciate you reading this and I certainly welcome your comments and questions. Have a good night.
Sunday, January 23, 2011
Liar, Liar, Pants on Fire
After a kind of rough 2010, I have turned over a new leaf in 2011. From here on out, I am going to tell you all the truth. I have chosen to move my family in with my parents, cause my family significant emotional and financial stress, put my work in a tough spot by taking a leave of absence, take multiple pills everyday including high dose antibiotics that make me sick to my stomach, go through minor surgery that will leave me with physical scars, and undergo weekly IV treatments and multiple other needle sticks even though I have a phobia of needles, all for my personal enjoyment. I am not sick and I don't have Lyme Disease or anything else significantly wrong with me. At least that is the truth according my disability company that just denied my appeal. If they are telling the truth than that makes me a liar. Not only must I be lying, but the three doctors and one other holistic health practitioner I saw are all liars too.
So if you can't tell by now, I am angry, frustrated, hurt and dumbfounded beyond belief. Just a few hours ago I received the denial letter regarding my appeal for short term disability. Just like I said, the rep didn't call, she just dropped the letter in the mail. She could have told me last week she was preparing the denial letter. But in their typical fashion, they pretend they are still working on it and will let you know very soon. It only took them 88 days to tell me once again that me and my doctors are full of...for lack of a better term...full of chocolate pudding.
I only have two questions for my rep on Monday. Can I please have the name and phone number of the best person for my lawyer to call? When can I set up an appointment with one of your doctors? Since my three doctors are all wrong and they have all seen me, I would love for your doctor to do an exam and run some tests and tell me what the heck is wrong with me then. I will love to hear her answer. I was certainly holding out a little bit of hope that the answer would be different but I kind of knew if the back of my mind it was going to be a no. I am glad that in their letter they reference a job description for a Fire Inspector from some official manual or book that was updated in 1991. Glad they are using current information.
It will be pointless to rehash everything I have said more than once already about what a crime this whole thing is. I could devote the rest of my life to fighting for Lyme patients. In some form or another I will. I am far from the first person to go through this and I certainly won't be the last. I guess part of you just wants to believe that it is only really bad for a few people. I am afraid that in the case of Lymies it is this bad and worse for the vast majority.
I know I need to give you an update on my IV treatments and symptoms and all but right now I am just fried. Part of that has to do with the fact the I have a severe headache tonight. I will say the first week of at home treatments is done with. Ryan is an awesome nurse and I am so thankful for him. This is going to be a long 6 motnhs to say the least. Time for some warm milk, Advil, melatonin, and my Saturday night COPS to put me to sleep. I am home alone while Ryan and the girls are on a date to the Monster Trucks with some friends. I did not want to ruin Ryan's night by calling and telling him, so even though I am writing this post tonight, it will have to wait until the morning when I can tell him.
I know in my heart that this turn of events allows another opportunity for God to act in big ways. I need to get back on track with my time with God and really just learn to rest in His promises. I am in the middle of a journey where I am learning how to "lose control, without losing my mind". Basically like I was reminded a couple of weeks ago, God is going to rip the control freak out of me one way or another. Needless to say the next few days maybe filled with all sorts of venting and rambling as I try to process what has happened and where we go from here or they may be empty as I am just worn out from all of this. Sooner or later you will be back up to speed. Thank you again for checking in and all of your support! It is appreciated much more than you know.
So if you can't tell by now, I am angry, frustrated, hurt and dumbfounded beyond belief. Just a few hours ago I received the denial letter regarding my appeal for short term disability. Just like I said, the rep didn't call, she just dropped the letter in the mail. She could have told me last week she was preparing the denial letter. But in their typical fashion, they pretend they are still working on it and will let you know very soon. It only took them 88 days to tell me once again that me and my doctors are full of...for lack of a better term...full of chocolate pudding.
I only have two questions for my rep on Monday. Can I please have the name and phone number of the best person for my lawyer to call? When can I set up an appointment with one of your doctors? Since my three doctors are all wrong and they have all seen me, I would love for your doctor to do an exam and run some tests and tell me what the heck is wrong with me then. I will love to hear her answer. I was certainly holding out a little bit of hope that the answer would be different but I kind of knew if the back of my mind it was going to be a no. I am glad that in their letter they reference a job description for a Fire Inspector from some official manual or book that was updated in 1991. Glad they are using current information.
It will be pointless to rehash everything I have said more than once already about what a crime this whole thing is. I could devote the rest of my life to fighting for Lyme patients. In some form or another I will. I am far from the first person to go through this and I certainly won't be the last. I guess part of you just wants to believe that it is only really bad for a few people. I am afraid that in the case of Lymies it is this bad and worse for the vast majority.
I know I need to give you an update on my IV treatments and symptoms and all but right now I am just fried. Part of that has to do with the fact the I have a severe headache tonight. I will say the first week of at home treatments is done with. Ryan is an awesome nurse and I am so thankful for him. This is going to be a long 6 motnhs to say the least. Time for some warm milk, Advil, melatonin, and my Saturday night COPS to put me to sleep. I am home alone while Ryan and the girls are on a date to the Monster Trucks with some friends. I did not want to ruin Ryan's night by calling and telling him, so even though I am writing this post tonight, it will have to wait until the morning when I can tell him.
I know in my heart that this turn of events allows another opportunity for God to act in big ways. I need to get back on track with my time with God and really just learn to rest in His promises. I am in the middle of a journey where I am learning how to "lose control, without losing my mind". Basically like I was reminded a couple of weeks ago, God is going to rip the control freak out of me one way or another. Needless to say the next few days maybe filled with all sorts of venting and rambling as I try to process what has happened and where we go from here or they may be empty as I am just worn out from all of this. Sooner or later you will be back up to speed. Thank you again for checking in and all of your support! It is appreciated much more than you know.
Friday, January 14, 2011
Meet Donald
I can't explain to you how my children came up with this name, but after much debate they have named my port Donald. So from here on out when ever I refer to Donald I am talking about my port. Let me start by saying disability does not have an answer. I wish I hadn't even called today. Telling myself I wouldn't know until the 24th was actually keeping me somewhat calm about the issue but calling today got me all upset again. My rep did get the final physicians report but hasn't finished up her part. She said they do work on Monday and don't worry she will have an answer before the 24th which is the initial 45 day period. I had to remind her that the 24th would be the end of 90 days and I had to have an answer. Oh yes that's right. Anyways, I am going to try and not call until the 24th. I am hoping the rep will do as she has indicated and call me but I won't hold my breath. Moving on...
Donald certainly isn't as sore as he was Tuesday but he still hurts when you push on him. Here is a little recap of what has gone on the last two days. Not very exciting and I don't have a video for you but that should come next week. Yesterday (Thursday) we went in to the doctors to have my first IV treatment. The office was crazy and things took a little longer than expected but that was okay. Ryan and I were called back and put in a room right next to the IV lounge as I call it. There are 6 or 8 recliners with pillows on them and cables hanging from the ceiling to hang the IV bags from. If I remember next week maybe I can get a picture. There is an IV nurse there 3 days a week and believe me she is busy. My doctor has a very integrative practice and does all sorts of things there. IV ozone and vitamin C plus a practitioner who does colon hydrotherapy are only some of the things that go on there. We waited for the doctor to come in and get us started. We decided that yesterday and today we were going to do all my medicine in 1 infusion (if I am using that word correctly). So we did 4 grams of Rocephin yesterday morning and this morning instead of 2 in morning and 2 at night each day. That allowed Ryan to practice doing everything he needs to do at home including taking the needle out. From here on out I will go in every Tuesday and have the nurse or doctor "access" Donald and give me my first does. We will then take all of the supplies home for the week and Ryan will give me my 7 other treatments and "deaccess" Donald on Friday night after my last treatment. Unfortunately when my port is accessed it is not as low profile as we thought but that is just something I will have to deal with. My biggest fear by far was the actual needle stick. It wasn't to bad. I would still probably prefer to use the numbing cream but the doctor doesn't think I will need it. So the doctor had Ryan jump right in and start mixing my meds with the saline and putting it all in the bag. It only took about 15 to 20 minutes to infuse. I tolerated the full dose fine yesterday. I was just tired. Same thing today really. Only when we done Ryan had to deaccess Donald which just means pull the needle out. Not fun but bearable. I think Ryan has it down and will do just fine with everything. I could probably even do it myself but I don't want to take any chances I will have brain fog and forget something. I have tolerated today's dose okay. We will see how things go over the next week. I am due in about a week to start my bug killing cycle so the timing couldn't be better. Next week may be very interesting. I was joking about Ryan's debut on youtube. Maybe we should call it Dr. Ryan's in the House. I am actually not sure if I will put the video of what this process is like on youtube. I guess what ever is the easiest way to share it.
All of sudden I am kind of running out of things to say. I guess I just wanted to let you know a little bit about how these two days went. I am starting on Actigall as a preventative measure for gallstones. Right now nothing else is changing. When I am done with this bottle of Mepron I can stop that but I believe everything else will continue. Not really getting a break but whatever needs to be done. My husbands honeydo for the weekend is to install two hooks for my IV bad. One above our bed and one by the couch. I joked about him installing a whole wire track so I can just walk around with my IV. He just says maybe I need to learn to sit still for 15 minutes. Other than the hooks and getting a container for all my supplies that should be it. I guess that is it for now. Talk at you soon.
Donald certainly isn't as sore as he was Tuesday but he still hurts when you push on him. Here is a little recap of what has gone on the last two days. Not very exciting and I don't have a video for you but that should come next week. Yesterday (Thursday) we went in to the doctors to have my first IV treatment. The office was crazy and things took a little longer than expected but that was okay. Ryan and I were called back and put in a room right next to the IV lounge as I call it. There are 6 or 8 recliners with pillows on them and cables hanging from the ceiling to hang the IV bags from. If I remember next week maybe I can get a picture. There is an IV nurse there 3 days a week and believe me she is busy. My doctor has a very integrative practice and does all sorts of things there. IV ozone and vitamin C plus a practitioner who does colon hydrotherapy are only some of the things that go on there. We waited for the doctor to come in and get us started. We decided that yesterday and today we were going to do all my medicine in 1 infusion (if I am using that word correctly). So we did 4 grams of Rocephin yesterday morning and this morning instead of 2 in morning and 2 at night each day. That allowed Ryan to practice doing everything he needs to do at home including taking the needle out. From here on out I will go in every Tuesday and have the nurse or doctor "access" Donald and give me my first does. We will then take all of the supplies home for the week and Ryan will give me my 7 other treatments and "deaccess" Donald on Friday night after my last treatment. Unfortunately when my port is accessed it is not as low profile as we thought but that is just something I will have to deal with. My biggest fear by far was the actual needle stick. It wasn't to bad. I would still probably prefer to use the numbing cream but the doctor doesn't think I will need it. So the doctor had Ryan jump right in and start mixing my meds with the saline and putting it all in the bag. It only took about 15 to 20 minutes to infuse. I tolerated the full dose fine yesterday. I was just tired. Same thing today really. Only when we done Ryan had to deaccess Donald which just means pull the needle out. Not fun but bearable. I think Ryan has it down and will do just fine with everything. I could probably even do it myself but I don't want to take any chances I will have brain fog and forget something. I have tolerated today's dose okay. We will see how things go over the next week. I am due in about a week to start my bug killing cycle so the timing couldn't be better. Next week may be very interesting. I was joking about Ryan's debut on youtube. Maybe we should call it Dr. Ryan's in the House. I am actually not sure if I will put the video of what this process is like on youtube. I guess what ever is the easiest way to share it.
All of sudden I am kind of running out of things to say. I guess I just wanted to let you know a little bit about how these two days went. I am starting on Actigall as a preventative measure for gallstones. Right now nothing else is changing. When I am done with this bottle of Mepron I can stop that but I believe everything else will continue. Not really getting a break but whatever needs to be done. My husbands honeydo for the weekend is to install two hooks for my IV bad. One above our bed and one by the couch. I joked about him installing a whole wire track so I can just walk around with my IV. He just says maybe I need to learn to sit still for 15 minutes. Other than the hooks and getting a container for all my supplies that should be it. I guess that is it for now. Talk at you soon.
Tuesday, January 11, 2011
My Port Is In
Well after all of the drama, stress and anxiety of the past week, I am happy to say my port is in. I started yesterday expecting to have reschedule my port "install" while I waited for some insurance issues to be worked out. In the end things worked in my favor. What a surprise. To recap the last few days...last Friday I got a call from the nurse at my doctors saying everything had been taken care of and the hospital had my orders. They should call me but if I waited an hour or so I could call them and schedule everything. I waited about 2 hours or so and called the hospital a little after 12. They had everything but when we went to schedule it, the nurse wasn't sure that they would do a port and said they usually do the PICC lines for patients like me. That got me a little nervous, but she confirmed we could do the port and set it up for 1:00 p.m. on the following Monday (yesterday). I was all happy we were moving forward. Not 10 minutes go by and the hospital calls back and wants to cancel my procedure because they don't have a pre-authorization from my insurance. First they had my old insurance and then they didn't have approval and my doctors office closes at noon on Fridays so they couldn't reach anyone to try and clear it up. We kept it scheduled for Monday and hoped we could work everything out before 1:00. I won't go into detail of what happened after that but it was pretty much a repeat of Thursday. My husband and I had a great talk about everything and he did such a good job calming me down and helping me get another perspective. So as I approached yesterday morning, I told myself to not expect to have the procedure done and then I got surprised when things worked out.
I was really glad that my time to worry was very limited. I only had about 3 hours from the time I heard it was a go until I had to be at the hospital. So we get down to the hospital and check in. Of course I left the house without my list of medications so it was hard to remember everything. I keep telling myself I need to give my husband a little card with all my meds and supplements with their doses on it just in case something happens. It all worked out and check in was easy. It was a few tense minutes until they called my back. I gave my husband a kiss and off I went. Luckily I was worried about how cold I was going to get but I only had to lose the clothes on the top half. A nice "nurse" took me back to a room that looked about like an x-ray room. (This is done in interventional radiology) I was thinking I was getting an x-ray first but this where it was all going down. The doctor or two doctors were men but everyone was a woman. I can not say enough about how sweet and funny they were. They showed my a little demo about the port and talked to me about everything. They could tell I was nervous. I laid down on the table and they loaded me up with warm blankets. That is the one great thing about the hospital...warm blankets. I just love them. It was great because I even got to keep my Uggs on so I for once I wasn't cold. The nurse goes to put the IV in. She was great. I almost didn't feel a thing. She asked me if there was certain music I liked because they had satellite radio and probably had anything I wanted. I said Christian. She found a Christian rock station and I wanted to cry. Not only was I put at ease but I figured there was a slight chance it was a witness to whatever staff was in that room. AWESOME! I was getting IV sedation so I was awake but out of it. She didn't even tell me she gave me the medicine. I was just laying there, all warm, listening to great music and I got so sleepy. I said did you give something yet. She said yes and I will give you some more. I was out after that. I remember feeling some pain as they were pushing or snapping something in. I could her the two doctors talking to each other but I don't remember their conversation. Then it was time to get up. I was very sleepy and out of it. No nausea though, which is a surprise for me. I asked the doctor if I said anything embarrassing and he said no. I was glad for that. They wheeled me out in a wheel chair and away we went. I was out of it most of the afternoon and night. I helped get the kids and we did eat dinner but in between it was very hard to keep my eyes open.
I was extremely sore yesterday and still am today. Part of it is the bandages. They seem to pull my skin depending on how I move. This is definitely a reminder that I need to really work on my core strength. You don't realize how much you use your neck and chest muscles until you have surgery or something that really affects them. This same happened when I had my thyroid surgery back in 1995. It was so hard to sit up from a laying down position because I would strain and pull all of those muscles in my neck. As a side note, it was kind of funny yesterday when the nurse was explaining they had to make a small incision in my neck so they could access the jugular vein to put the tube or catheter part in. She tried to reassure me the scare would be small. I said I'm not worried, you haven't seen my thyroid scare. It goes across most of my neck. Doesn't bother me. I like to joke sometimes if people ask me what happen and tell them it was from an ex-boyfriend. A good family friend actually gave me the nickname Pez, you know the candy dispenser, because I open at the neck. Anyways, I wasn't going to worry about this little scar. I have a handful of scars in visible places. I have learned to not let them bother me. They tell part of my life story. Battle wounds are cool! :)
Well, nothing yet on disability of course. I start the IV meds on Thursday. I will definitely video that. Partly so we can see how the nurse does everything, partly so I can share it with anyone who is interested. I feel like that is part of why I am going through this. I have appreciated watching other peoples journey. I think it is helpful. I guess the last thing I'll say, is I am searching for a name for my port. You may think it is weird but I have met a couple of people who have named their PICC line or their port since you have to refer to it so much and it is a part of you for quite a while. So don't hesitate to give some ideas. Thanks for checking in and for all of the prayers and support. I will certainly keep you posted.
I was really glad that my time to worry was very limited. I only had about 3 hours from the time I heard it was a go until I had to be at the hospital. So we get down to the hospital and check in. Of course I left the house without my list of medications so it was hard to remember everything. I keep telling myself I need to give my husband a little card with all my meds and supplements with their doses on it just in case something happens. It all worked out and check in was easy. It was a few tense minutes until they called my back. I gave my husband a kiss and off I went. Luckily I was worried about how cold I was going to get but I only had to lose the clothes on the top half. A nice "nurse" took me back to a room that looked about like an x-ray room. (This is done in interventional radiology) I was thinking I was getting an x-ray first but this where it was all going down. The doctor or two doctors were men but everyone was a woman. I can not say enough about how sweet and funny they were. They showed my a little demo about the port and talked to me about everything. They could tell I was nervous. I laid down on the table and they loaded me up with warm blankets. That is the one great thing about the hospital...warm blankets. I just love them. It was great because I even got to keep my Uggs on so I for once I wasn't cold. The nurse goes to put the IV in. She was great. I almost didn't feel a thing. She asked me if there was certain music I liked because they had satellite radio and probably had anything I wanted. I said Christian. She found a Christian rock station and I wanted to cry. Not only was I put at ease but I figured there was a slight chance it was a witness to whatever staff was in that room. AWESOME! I was getting IV sedation so I was awake but out of it. She didn't even tell me she gave me the medicine. I was just laying there, all warm, listening to great music and I got so sleepy. I said did you give something yet. She said yes and I will give you some more. I was out after that. I remember feeling some pain as they were pushing or snapping something in. I could her the two doctors talking to each other but I don't remember their conversation. Then it was time to get up. I was very sleepy and out of it. No nausea though, which is a surprise for me. I asked the doctor if I said anything embarrassing and he said no. I was glad for that. They wheeled me out in a wheel chair and away we went. I was out of it most of the afternoon and night. I helped get the kids and we did eat dinner but in between it was very hard to keep my eyes open.
I was extremely sore yesterday and still am today. Part of it is the bandages. They seem to pull my skin depending on how I move. This is definitely a reminder that I need to really work on my core strength. You don't realize how much you use your neck and chest muscles until you have surgery or something that really affects them. This same happened when I had my thyroid surgery back in 1995. It was so hard to sit up from a laying down position because I would strain and pull all of those muscles in my neck. As a side note, it was kind of funny yesterday when the nurse was explaining they had to make a small incision in my neck so they could access the jugular vein to put the tube or catheter part in. She tried to reassure me the scare would be small. I said I'm not worried, you haven't seen my thyroid scare. It goes across most of my neck. Doesn't bother me. I like to joke sometimes if people ask me what happen and tell them it was from an ex-boyfriend. A good family friend actually gave me the nickname Pez, you know the candy dispenser, because I open at the neck. Anyways, I wasn't going to worry about this little scar. I have a handful of scars in visible places. I have learned to not let them bother me. They tell part of my life story. Battle wounds are cool! :)
Well, nothing yet on disability of course. I start the IV meds on Thursday. I will definitely video that. Partly so we can see how the nurse does everything, partly so I can share it with anyone who is interested. I feel like that is part of why I am going through this. I have appreciated watching other peoples journey. I think it is helpful. I guess the last thing I'll say, is I am searching for a name for my port. You may think it is weird but I have met a couple of people who have named their PICC line or their port since you have to refer to it so much and it is a part of you for quite a while. So don't hesitate to give some ideas. Thanks for checking in and for all of the prayers and support. I will certainly keep you posted.
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