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.
Tuesday, January 11, 2011
Thursday, January 6, 2011
Throwing in the Towel
I don't think I have ever been as close to throwing in the towel, quiting, giving up, as I have today. I knew yesterday when I was praying for continued help in the patience department I probably wasn't going to like God's way of helping me. Deep down though I have a feeling He would not have changed a thing about today regardless of my prayer yesterday. I don't want to be a quitter and for the sake of my family I can't quit. That doesn't mean I wasn't brought to the brink. The one almost humorous part about today was when I was on the floor sobbing and crying out to God I was saying "I can't do this. I can't do this without You." All of sudden it was like "DUH! You can't do it, but I can!" Once again I was realizing that I needed to have total dependence on God. It is in these moments that I lose sight of myself and my abilities and rely on the only one who can get me through this. I guess that is part of the journey, part of the reason for this trial in my life. In some way, I feel like I should be honored that God chose me to endure this and other times I feel nothing but anger and frustration.
After all of that, I guess I should tell you what pushed me to this point. I was trying to pass the time and not think about the hospital calling and decided I guess I will give disability a call and see what the update is. My hope of course was that the claim rep would have an answer for me. Occasionally I don't care what the answer is, I just want to know. I know though that I will be devastated if the answer is DENIED! It is worth it to wait a little longer if the answer ends up being APPROVED! Anyways, I left a message and a short time later I got a call back. I took a deep breath as I answered the phone and this is the summary of what I heard. "I was supposed to get the final doctors report by the end of last week. I haven't received it yet. I was told I should have it today. Then I just need to finish up my part. I really don't see there being any other delays." It took every ounce of strength I had and some help from the Holy Spirit to not unload on her. I kept my composure. Although she could tell I was disappointed, I made sure I didn't give her any snotty attitude. I know it is hard to believe that I could be snotty but I have known to unload on unsuspecting people. Part of the Lyme rage thing I have learned. Not pretty. So at least I kept it together. That is until I hung up the phone. Then I was like a puddle of mush on the floor, crying so hard I was trying to not throw up. I do realize how bad it is for me to get this upset. I can not control my feelings though. Bottom line, there is a flood of emotions that need to come out.
I yelled, prayed, and read my Bible until I was calm again. Although it still doesn't take much to put me into tears. I waited a while and finally decided, against my husbands better judgement, that I was going to call the hospital to see if anyone could tell me about scheduling this procedure. The first person I talk to says the hospital never calls patients to schedule surgeries. Then she says oh this is done in radiology, let me transfer you. I get in touch with the scheduler for radiology and she says she doesn't know anything about me or my procedure and that my doctor has send over all of this stuff. Now I have to call my doctor. I had to call them anyways to cancel my appointment with the infusion nurse for Tuesday since I wasn't having the port put in this week. I have to wait 2 or 3 days after the port to start the infusion. I cancelled the appointment and then had to leave a message for the nurse. Now I really my doctor and the staff at the office but I will admit I haven't had great luck with his nurse. I know she is busy but sometimes I haven't even heard back from her. I was told hopefully she could pull my file and if I didn't hear from her today, I would her tomorrow. My luck, everything is going as planned and the doctor just thought the lab results would be back sooner. I just know he told me a while ago we only had to do everything about a week ahead of time and that is not how things are working out. I am just so over it all at this point. Of course I am worried that this is pushing everything back. The later I start the infusion, then that may mean the later I can go back to work. I don't want to push my luck with the City. I am just freaking out at this point.
So be honest with me. Is me calling the hospital and all, is that me not being patient? Does that mean I am not trusting God and I am trying to control the situation? or Does it just mean that I am taking charge and following up? Here I go again analyzing things. I just always question what I am doing and is it right, wrong, neither...How does God view this? The questions are endless. Do you see why my brain never shuts off. Believe me, my brain is still going way faster then I can type. It's like a thought pops into my head, it's kind of at the forefront of my brain, but there is all of this background noise in the form of other thoughts cluttering things up.
Well now that I got that out, I am going to try and just forget about it all until Monday. If I am lucky, I will get the port "install" scheduled for Monday and we can move on with things. Depending on how things go, maybe I can still have the date I planned with my husband as part of his Christmas present. The plan was to go see The Ultimate Wave (I think that is what it is called) at the IMAX theatre and the Reuben H Fleet Science Center. It is all about Tahiti and surfing and sounds incredible. I guess that would be the good thing that comes out of this. Good night for now. Again, please, if you are a praying person, continue to do so. It is hard for me to ask for help or anything else. I may where everything on my sleeve and be a very open person but to ask you to do something for me is hard. But I do need the prayers. I don't want to continue on this way...full of anxiety, fear, and stress. I want to take it all in stride. I read in my Bible today that just because you "count it all joy" when facing struggles, doesn't mean there isn't pain and hurt and that you just pretend your struggle is not a struggle. It means though that you can see the greater good and know that this trial or struggle is going to bring about better things. I am really trying to count it all joy right now. If I don't try that and believe and have hope of what is to come then I might as well throw in the towel. I would have nothing left. As much as I want to at times, and as much as I wanted to today, I won't quit! I can't!
After all of that, I guess I should tell you what pushed me to this point. I was trying to pass the time and not think about the hospital calling and decided I guess I will give disability a call and see what the update is. My hope of course was that the claim rep would have an answer for me. Occasionally I don't care what the answer is, I just want to know. I know though that I will be devastated if the answer is DENIED! It is worth it to wait a little longer if the answer ends up being APPROVED! Anyways, I left a message and a short time later I got a call back. I took a deep breath as I answered the phone and this is the summary of what I heard. "I was supposed to get the final doctors report by the end of last week. I haven't received it yet. I was told I should have it today. Then I just need to finish up my part. I really don't see there being any other delays." It took every ounce of strength I had and some help from the Holy Spirit to not unload on her. I kept my composure. Although she could tell I was disappointed, I made sure I didn't give her any snotty attitude. I know it is hard to believe that I could be snotty but I have known to unload on unsuspecting people. Part of the Lyme rage thing I have learned. Not pretty. So at least I kept it together. That is until I hung up the phone. Then I was like a puddle of mush on the floor, crying so hard I was trying to not throw up. I do realize how bad it is for me to get this upset. I can not control my feelings though. Bottom line, there is a flood of emotions that need to come out.
I yelled, prayed, and read my Bible until I was calm again. Although it still doesn't take much to put me into tears. I waited a while and finally decided, against my husbands better judgement, that I was going to call the hospital to see if anyone could tell me about scheduling this procedure. The first person I talk to says the hospital never calls patients to schedule surgeries. Then she says oh this is done in radiology, let me transfer you. I get in touch with the scheduler for radiology and she says she doesn't know anything about me or my procedure and that my doctor has send over all of this stuff. Now I have to call my doctor. I had to call them anyways to cancel my appointment with the infusion nurse for Tuesday since I wasn't having the port put in this week. I have to wait 2 or 3 days after the port to start the infusion. I cancelled the appointment and then had to leave a message for the nurse. Now I really my doctor and the staff at the office but I will admit I haven't had great luck with his nurse. I know she is busy but sometimes I haven't even heard back from her. I was told hopefully she could pull my file and if I didn't hear from her today, I would her tomorrow. My luck, everything is going as planned and the doctor just thought the lab results would be back sooner. I just know he told me a while ago we only had to do everything about a week ahead of time and that is not how things are working out. I am just so over it all at this point. Of course I am worried that this is pushing everything back. The later I start the infusion, then that may mean the later I can go back to work. I don't want to push my luck with the City. I am just freaking out at this point.
So be honest with me. Is me calling the hospital and all, is that me not being patient? Does that mean I am not trusting God and I am trying to control the situation? or Does it just mean that I am taking charge and following up? Here I go again analyzing things. I just always question what I am doing and is it right, wrong, neither...How does God view this? The questions are endless. Do you see why my brain never shuts off. Believe me, my brain is still going way faster then I can type. It's like a thought pops into my head, it's kind of at the forefront of my brain, but there is all of this background noise in the form of other thoughts cluttering things up.
Well now that I got that out, I am going to try and just forget about it all until Monday. If I am lucky, I will get the port "install" scheduled for Monday and we can move on with things. Depending on how things go, maybe I can still have the date I planned with my husband as part of his Christmas present. The plan was to go see The Ultimate Wave (I think that is what it is called) at the IMAX theatre and the Reuben H Fleet Science Center. It is all about Tahiti and surfing and sounds incredible. I guess that would be the good thing that comes out of this. Good night for now. Again, please, if you are a praying person, continue to do so. It is hard for me to ask for help or anything else. I may where everything on my sleeve and be a very open person but to ask you to do something for me is hard. But I do need the prayers. I don't want to continue on this way...full of anxiety, fear, and stress. I want to take it all in stride. I read in my Bible today that just because you "count it all joy" when facing struggles, doesn't mean there isn't pain and hurt and that you just pretend your struggle is not a struggle. It means though that you can see the greater good and know that this trial or struggle is going to bring about better things. I am really trying to count it all joy right now. If I don't try that and believe and have hope of what is to come then I might as well throw in the towel. I would have nothing left. As much as I want to at times, and as much as I wanted to today, I won't quit! I can't!
Wednesday, January 5, 2011
The Anxiety is Killing Me
It is no secrete at this point that I don't really handle stress well and I am not very patient. Those are things over the past year I have wanted to and had to work on. Both of those things are a work in progress. Right now I would say I have taken one step back. Today was the anticipated day the hospital was going to call and tell me when to come in for my port. As of 4:00 I have not heard and I think it is safe to say I won't hear anything today. That means I won't be having the procedure tomorrow. I guess that still leaves a chance for Friday. I so wish they would have called just so I would know when. But knowing me, that wouldn't help my anxiety level. I have been getting increasinly anxious about this the past few days and it is very hard for me to sleep at night. I realize it is not good for me but there is not a whole lot I can do about it. I also don't know how long to wait until I call the doctor or the hospital. How bad is it that all of these negative things go through my mind...what if they didn't get the order, what if my blood work isn't good enough, what if they have the wrong phone number, what if....On and on the list goes. Here I am supposed to be working on thinking positive and my nature and habit have been doing just the opposite. Lord please help me to not be so negative but to learn to see the positive in every situation. Also please help me be anxious for nothing and continue to help me with my patience. (I cringe when I pray that last part, asking God for help with patience is almost certainly asking for everything important in your life to be delayed for a very long time.) So anyways, at first I told myself that I would wait until today to call disability. Then I decided to wait until after I heard from the hospital. Here I sit, a ball of stress, wondering how I will get through tonight until tomorrow where I can wait all over again. I think I need a stiff drink, or a good cry, or I don't know what!
I just need to remember God's timing is perfect. So in His time will these things happen....tick, tock, tick, tock!
On a little bit of another note, I had a bad (in a good way) herx day the other day. I had a pretty freaky twitching episode on Sunday that made me unable to speak for a little while. I am sure the silence was welcomed by family however, it is very frustrating when you can almost feel a physical disconnect between your brain and your mouth. I know what I am trying to say but the words won't come out. I managed to get through that and have been really tired the last few days. I did go and use a coupon I had for an hour long reflexology and 30 minute detox ionic foot bath. The reflexoglogy hurt but was good. She said based on what she felt, my mid back and right shoulder were messed up. Right on the button with those things. The ionic foot bath is cool because you sit there and the water changes color to indicate where you are having problems and what toxins you are eliminating. The lady doing that part came over and said that my water was really dark which means joint problems. So kind of cool. It did wear me out and my joints hurt a little the rest of the day. Just trying to relax and detox before the port. I am glad I am herxing only because it means I am still killing bugs.
I have been researching a lot about the port, and infusions and all that. I am glad I have an idea of what to expect yet at the same time it is scaring me. None of this looks fun. I mean, I knew it wouldn't be fun but it looks maybe tougher to handle than I thought. I have seen some young kids go through it though, so I don't have anything to complain about. If a six year old can deal with this than I most certainly can.
I just got done reading "Choosing to SEE" by Mary Beth Chapman. I highly recommend it but it will make you cry. Anyways, in the book Mary is talking about her plan for her life and all of things that were not in it and how God's plan for her life had everything almost opposite. It made me look back and laugh a little about my own situation. I remember meeting a girl right after I graduated high school, who was going on a trip to Australia and New Zealand with me and a bunch of other students. She had an insulin pump in her stomach for her diabetes. I remember praying, God please don't ever let me get something that requires regular shots or blood draws. I won't be able to handle it! Well I guess God had a different plan. I will handle it, with His help. I don't have a choice.
With that I will say good bye for now. Tomorrow is a new day. Hopefully it is one that is full of answers for me.
I just need to remember God's timing is perfect. So in His time will these things happen....tick, tock, tick, tock!
On a little bit of another note, I had a bad (in a good way) herx day the other day. I had a pretty freaky twitching episode on Sunday that made me unable to speak for a little while. I am sure the silence was welcomed by family however, it is very frustrating when you can almost feel a physical disconnect between your brain and your mouth. I know what I am trying to say but the words won't come out. I managed to get through that and have been really tired the last few days. I did go and use a coupon I had for an hour long reflexology and 30 minute detox ionic foot bath. The reflexoglogy hurt but was good. She said based on what she felt, my mid back and right shoulder were messed up. Right on the button with those things. The ionic foot bath is cool because you sit there and the water changes color to indicate where you are having problems and what toxins you are eliminating. The lady doing that part came over and said that my water was really dark which means joint problems. So kind of cool. It did wear me out and my joints hurt a little the rest of the day. Just trying to relax and detox before the port. I am glad I am herxing only because it means I am still killing bugs.
I have been researching a lot about the port, and infusions and all that. I am glad I have an idea of what to expect yet at the same time it is scaring me. None of this looks fun. I mean, I knew it wouldn't be fun but it looks maybe tougher to handle than I thought. I have seen some young kids go through it though, so I don't have anything to complain about. If a six year old can deal with this than I most certainly can.
I just got done reading "Choosing to SEE" by Mary Beth Chapman. I highly recommend it but it will make you cry. Anyways, in the book Mary is talking about her plan for her life and all of things that were not in it and how God's plan for her life had everything almost opposite. It made me look back and laugh a little about my own situation. I remember meeting a girl right after I graduated high school, who was going on a trip to Australia and New Zealand with me and a bunch of other students. She had an insulin pump in her stomach for her diabetes. I remember praying, God please don't ever let me get something that requires regular shots or blood draws. I won't be able to handle it! Well I guess God had a different plan. I will handle it, with His help. I don't have a choice.
With that I will say good bye for now. Tomorrow is a new day. Hopefully it is one that is full of answers for me.
Saturday, January 1, 2011
Bring on 2011
Happy New Year! It is hard to believe that another year has gone by. Why is it that the older we get the faster time goes by? Well this past year has been a whirlwind for me and my family. It has been filled with ups and downs and a few surprises. I am happy to say that at least I have a reason for why I haven't been feeling well. I finally can say I am not crazy and I was right to think I wasn't feeling like a 32/33 year old should feel. I am definitely looking forward to finding out what it feels like to feel good. I haven't felt good for at least 15 years so it is hard to remember what it feels like to have a normal amount of energy and just feel normal.
I have so much I would love to accomplish this year. I guess I just need to remember not to be too hard on my self when I can't do everything I want. I would love to start this year all organized, with a perfectly clean house, and all caught up on laundry. The reality is that won't happen. I need to realize my limitations and stop pushing myself beyond my limits. That is certainly not going to help my get any better. It looks like I will be starting this year off with a minor surgery and some challenges that are definitely going to test me. I am looking forward to these challenges drawing me closer to God and making me a stronger person.
I am fearful and excited at the same time about what my future might hold. I do believe with all of my heart that I am going through this trial for a reason. Something good is supposed to come out it. I definitely need to spend some time in pray on the matter.
As far as New Years resolutions go... Well I have always enjoyed making them but I have never keep them for long. I certainly have the usual ones that pop into my head like eat better and exercise more. This year I need to focus on my diet for sure. I need to get extra rest. I need to spend more time or I guess just time reading my Bible. That is one thing I have never been good at. I don't know where I should start. I allow my self to get distracted and I don't make it part of my regular routine. I am hoping to change that this year. I also need to become better organized. That may come with healing of the Lyme disease. It has definitely affected me neurologically. I admit some of my problem with staying neat and organized is habit but a good part of it is neurological as well. My boss would love it if I came back to work a much neater and organized person. Let's hope. I or should I say we (Ryan and I) need to take better control of the finances. I haven't been able to even focus on that the past 5 months due to the disability issue. Of course my prayer is disability gets approved so we can get back on track financially. To be honest we still owe some taxes from 2010 and the government would like their money. I had no ides we were going to be in this position so that is one of the things that has suffered. I have one other bill I am behind on that I need to get caught up on. If the disability is approved all of that will be taken care and we will have some money left to start us off right knowing my medical expenses are coming. I am hoping this week I will get the answer i have been praying for. If you thin about it, please say a prayer about that for us.
Well I am not sure what else to say. I got a little off course but I mainly just wanted to look back on 2010 and look towards 2011. I look forward to continuing to share my journey with you and as always I enjoy reading your comments and answering your questions. May you have a healthy and happy 2011!
I have so much I would love to accomplish this year. I guess I just need to remember not to be too hard on my self when I can't do everything I want. I would love to start this year all organized, with a perfectly clean house, and all caught up on laundry. The reality is that won't happen. I need to realize my limitations and stop pushing myself beyond my limits. That is certainly not going to help my get any better. It looks like I will be starting this year off with a minor surgery and some challenges that are definitely going to test me. I am looking forward to these challenges drawing me closer to God and making me a stronger person.
I am fearful and excited at the same time about what my future might hold. I do believe with all of my heart that I am going through this trial for a reason. Something good is supposed to come out it. I definitely need to spend some time in pray on the matter.
As far as New Years resolutions go... Well I have always enjoyed making them but I have never keep them for long. I certainly have the usual ones that pop into my head like eat better and exercise more. This year I need to focus on my diet for sure. I need to get extra rest. I need to spend more time or I guess just time reading my Bible. That is one thing I have never been good at. I don't know where I should start. I allow my self to get distracted and I don't make it part of my regular routine. I am hoping to change that this year. I also need to become better organized. That may come with healing of the Lyme disease. It has definitely affected me neurologically. I admit some of my problem with staying neat and organized is habit but a good part of it is neurological as well. My boss would love it if I came back to work a much neater and organized person. Let's hope. I or should I say we (Ryan and I) need to take better control of the finances. I haven't been able to even focus on that the past 5 months due to the disability issue. Of course my prayer is disability gets approved so we can get back on track financially. To be honest we still owe some taxes from 2010 and the government would like their money. I had no ides we were going to be in this position so that is one of the things that has suffered. I have one other bill I am behind on that I need to get caught up on. If the disability is approved all of that will be taken care and we will have some money left to start us off right knowing my medical expenses are coming. I am hoping this week I will get the answer i have been praying for. If you thin about it, please say a prayer about that for us.
Well I am not sure what else to say. I got a little off course but I mainly just wanted to look back on 2010 and look towards 2011. I look forward to continuing to share my journey with you and as always I enjoy reading your comments and answering your questions. May you have a healthy and happy 2011!
Wednesday, December 29, 2010
Third Times a Charm
I went to the doctor this morning and just like I said I am posting an update. Really I don't think I have much to say, but as usual I may end up rambling on about whatever random thought pops into my head while I type even if it has nothing to do with what I was talking about.
This doctors visit seemed shorter than normal. The doc definitely seemed busy today and I don't know why but I felt like my appointment was too short. I guess I was expecting things to be different since this would be last appointment before my chest port being put in. It was just a standard appointment. Now I am not sure how other Lymies' doctor appointments go, but mine involve very little physical examination. I get the typical weight, temp, blood pressure and O2 sat but that is usually about it. Most of the appointments involve me describing my current symptoms, if I feel better or worse, asking questions, reviewing labs if we did any last time, and doing more blood work. This appointment was the same. The labs I had done last time were different than other ones I had had done but they were all normal. I did ask if we did a CD-57 because I thought we did and he said my sample wasn't good enough for it or what ever. We were doing one this time plus all of the labs the hospital needs to put in the chest port. I think it is mostly liver and kidney values, etc...
You know how much I love needles right? Well if you haven't heard I hate them more than you will ever know. Blood-no problem. Needles-big problem. I will never get used to them no matter how much I get stuck. So I had to go through the routine of getting a bunch of vials drawn. I consider 5 a bunch. I used to have great veins in my arms. I was always an easy stick. As time has gone on and especially much more recently my veins aren't so good anymore. I am not such an easy stick. Even if they get the vein, a number of times they get nothing out or my blood stops flowing part way through the draw. As luck would have it, I got it all today. The nurse used a big needle, thank you very much, and at the beginning of the third or fourth vial the blood just stops. Nothing, no more. So she looks at my arms and decides to try another vein in the arm she just used. She used another big needle and I don't know enough about the gauges of needles and why you use big verses small but I can say big wasn't working today. She stuck me and nothing. Not a drop. I haven't looked up why this may be happening and I guess it doesn't really matter, I am just curious. I am wondering if my low body temperature makes my blood to thick and it just doesn't want to come out. Based on the fact that the nurse offered me some water and said sometimes that helps, my husband said I am dehydrated and not drinking enough water. Maybe we are both wrong. Anyways...she brings me a glass of water and says she will be right back. Then a nurse that has done my blood before comes in. She looks at both arms and chooses the other arm. She goes in with a tiny butterfly needle setup that has a long tube on it, and magic. The last two vials get done. So today the third stick was a charm! Now the bruises are showing up.
This is basically what the doctor said- We will do the necessary blood work. The results and request should be in to the hospital by Wednesday. They should call hopefully Wednesday and set up the port for Thursday or Friday of next week. Then the following Tuesday I will go back to the doctors office and see the IV/Infusion nurse. It sounds like she will put in a line or something into the port so I only have to get stuck once a week. I do the meds twice a day for four days and then I would take the line out. I would go into to see her once a week. Now I am not sure if we will get to the point where Ryan can put the line in so I don't have to go down to Pacific Beach once a week but Ryan can at least do my meds the rest of the week.
I did mention to the doctor that I was wondering if I might have a kidney stone because of my flank pain the other night. He didn't say much but noted all of my symptoms down. He did say that a fairly common side effect of the Rocephin (like 20 to 30% of people get this) is gall stones. Now doesn't that sound like fun? But I need to get rid of this Lyme Disease and I guess that just may be something I have to endure along the way. Can I just say that I am sooooooooo beyond ready to start feeling better. My husband and I had a nice talk (more like I got a short lecture) about positive thinking in 2011. He says I am negative. I guess he is right to a degree. I look at it more like being realistic. I do understand his point. So even though I feel like crap everyday I would chose to say something like "Today is better than yesterday" or whatever the case may be. This disease just wears you down and you can't help but wonder if you ever will feel better. When you have been feeling bad for so long that you almost can't remember feeling good...it is a little hard to imagine. I am praying the Rocephin does the trick. At least I knew when I was feeling bad recently that bugs were being killed. I don't want to say I want to feel worse but I know bugs are begin destroyed and that does make me hopeful that I am getting closer to the day when I will feel better.
I have a lot more I could talk about but I am getting tired and need to save something to say for another day. God only knows what would happen to me if I ran out of things to ramble on about. I might self destruct! :)
This doctors visit seemed shorter than normal. The doc definitely seemed busy today and I don't know why but I felt like my appointment was too short. I guess I was expecting things to be different since this would be last appointment before my chest port being put in. It was just a standard appointment. Now I am not sure how other Lymies' doctor appointments go, but mine involve very little physical examination. I get the typical weight, temp, blood pressure and O2 sat but that is usually about it. Most of the appointments involve me describing my current symptoms, if I feel better or worse, asking questions, reviewing labs if we did any last time, and doing more blood work. This appointment was the same. The labs I had done last time were different than other ones I had had done but they were all normal. I did ask if we did a CD-57 because I thought we did and he said my sample wasn't good enough for it or what ever. We were doing one this time plus all of the labs the hospital needs to put in the chest port. I think it is mostly liver and kidney values, etc...
You know how much I love needles right? Well if you haven't heard I hate them more than you will ever know. Blood-no problem. Needles-big problem. I will never get used to them no matter how much I get stuck. So I had to go through the routine of getting a bunch of vials drawn. I consider 5 a bunch. I used to have great veins in my arms. I was always an easy stick. As time has gone on and especially much more recently my veins aren't so good anymore. I am not such an easy stick. Even if they get the vein, a number of times they get nothing out or my blood stops flowing part way through the draw. As luck would have it, I got it all today. The nurse used a big needle, thank you very much, and at the beginning of the third or fourth vial the blood just stops. Nothing, no more. So she looks at my arms and decides to try another vein in the arm she just used. She used another big needle and I don't know enough about the gauges of needles and why you use big verses small but I can say big wasn't working today. She stuck me and nothing. Not a drop. I haven't looked up why this may be happening and I guess it doesn't really matter, I am just curious. I am wondering if my low body temperature makes my blood to thick and it just doesn't want to come out. Based on the fact that the nurse offered me some water and said sometimes that helps, my husband said I am dehydrated and not drinking enough water. Maybe we are both wrong. Anyways...she brings me a glass of water and says she will be right back. Then a nurse that has done my blood before comes in. She looks at both arms and chooses the other arm. She goes in with a tiny butterfly needle setup that has a long tube on it, and magic. The last two vials get done. So today the third stick was a charm! Now the bruises are showing up.
This is basically what the doctor said- We will do the necessary blood work. The results and request should be in to the hospital by Wednesday. They should call hopefully Wednesday and set up the port for Thursday or Friday of next week. Then the following Tuesday I will go back to the doctors office and see the IV/Infusion nurse. It sounds like she will put in a line or something into the port so I only have to get stuck once a week. I do the meds twice a day for four days and then I would take the line out. I would go into to see her once a week. Now I am not sure if we will get to the point where Ryan can put the line in so I don't have to go down to Pacific Beach once a week but Ryan can at least do my meds the rest of the week.
I did mention to the doctor that I was wondering if I might have a kidney stone because of my flank pain the other night. He didn't say much but noted all of my symptoms down. He did say that a fairly common side effect of the Rocephin (like 20 to 30% of people get this) is gall stones. Now doesn't that sound like fun? But I need to get rid of this Lyme Disease and I guess that just may be something I have to endure along the way. Can I just say that I am sooooooooo beyond ready to start feeling better. My husband and I had a nice talk (more like I got a short lecture) about positive thinking in 2011. He says I am negative. I guess he is right to a degree. I look at it more like being realistic. I do understand his point. So even though I feel like crap everyday I would chose to say something like "Today is better than yesterday" or whatever the case may be. This disease just wears you down and you can't help but wonder if you ever will feel better. When you have been feeling bad for so long that you almost can't remember feeling good...it is a little hard to imagine. I am praying the Rocephin does the trick. At least I knew when I was feeling bad recently that bugs were being killed. I don't want to say I want to feel worse but I know bugs are begin destroyed and that does make me hopeful that I am getting closer to the day when I will feel better.
I have a lot more I could talk about but I am getting tired and need to save something to say for another day. God only knows what would happen to me if I ran out of things to ramble on about. I might self destruct! :)
Tuesday, December 28, 2010
When It Rains It Pours
Does anyone know where I can get a set of plans to build an ark? Let me tell you, lately when it rains it pours and I think I better start building an ark before it floods. I heard back from disability only to be told that she would have to call me back later in the day (yesterday) or hopefully first thing this morning. I haven't heard back yet. The claim rep said she had inquired about the status of the second physician review and hadn't heard back. When she did, she would let me know. Now when I talked with her on December 14th it sounded like the second physician review had been requested or started already and they usually try to do it in less then two weeks. She did ask that it be expedited. I know the office was closed last Thursday and Friday for Christmas. I do totally understand that. So hear we are though, two weeks later and she doesn't even know if it has been completed. I am praying when she calls back that is has been completed which means she should only have to make her final decision. I am praying that means I will have an answer this week. I know I have said before that this claim rep and I seem to interact better with each other than my first one and I did. However, I don't think things are going any better if you know what I mean. Their whole process seems slow and a little unorganized. Just because we can be nice to each other on the phone doesn't mean that I think she is going to call me on her own and say "I have reached a final decision on your appeal and it is ...." whatever the answer would be. I think we will play the game of I just need to make the final decision and she will know what it is and not tell me and then drop the letter in the mail. That is how it went the first time (which I am sure I have told you at least once). In a Wednesday afternoon conversation the rep told me she needed to make her final decision and she should have that done by Friday. On Thursday morning I get a call from HR at the City telling me I had been denied and they were notified Wednesday. They had no idea why the rep would tell me that when she obviously knew. I have an answer to that. It is called being chicken ....Well I don't need to finish that statement. I shouldn't call names. I am sorry but this is my life we are talking about here. If you can not be honest, upfront, and do things in a timely manner when dealing with someones life like this than you need to find another line of work. I'm just saying. Sorry I got sidetracked. I am sure you are used to it by now. So waiting, waiting, waiting. I am still not sure I have obtained the virtue of being patient. I am trying though. What choice do I have?
Back to the whole when it rains, it pours. So I did my little blog yesterday and ventured out with my kids to pick up some medicine and make a return. We weren't gone very long as I was not feeling good. So we come home and I ask Jenna to let the dogs in. She does and I walk around the corner to tell Boss, our 7 yr old yellow lab, to knock it off because he is always a spaz and getting wild. He looks weird and I am thinking he hurt his leg because he can't walk right so I go over to see what is up and he is having a full blown seizure. So I kind of freak out. It is scary to see and I am crying and trying to just calm him down and so the girls are crying. Long story short, he finally stops seizing and seems to pretty much go back to normal. I don't need this right now. So off to the vet we go. They do some blood work and everything is normal. That is good news. We will probably never know what caused the seizure and he may continue to have them. All we can do is try to let him know it is okay and keep a journal about them. If they get really frequent or severe we can consider anti-seizure meds. I am not sure I have much left in my emotional bank account to deal with all of this. I did let God know I was not happy about this and not sure what to do anymore. I also said there are 4 days left for the nonsense and stress of 2010 to get over with. I'm not doing this in 2011. Ryan just asked if that meant I was going to just keep a positive attitude next year. I said it was supposed to be an order that this stuff is going to stop but I know that I don't have any control over it. Sometimes I like to think I do and that what I say goes. Wishful thinking.
Well, the phone rang a few minutes ago. What do you know, it was disability. She said she should have the second physicians final report by the end of the week. Then she will finish up her final stuff and keep me posted. So I can probably expect at least another week and a half maybe two. Of course next week will probably be a short week. January 24th is getting closer and closer. I can feel the anger and the tears starting to build again. Not good. Time to pray...
Back to the whole when it rains, it pours. So I did my little blog yesterday and ventured out with my kids to pick up some medicine and make a return. We weren't gone very long as I was not feeling good. So we come home and I ask Jenna to let the dogs in. She does and I walk around the corner to tell Boss, our 7 yr old yellow lab, to knock it off because he is always a spaz and getting wild. He looks weird and I am thinking he hurt his leg because he can't walk right so I go over to see what is up and he is having a full blown seizure. So I kind of freak out. It is scary to see and I am crying and trying to just calm him down and so the girls are crying. Long story short, he finally stops seizing and seems to pretty much go back to normal. I don't need this right now. So off to the vet we go. They do some blood work and everything is normal. That is good news. We will probably never know what caused the seizure and he may continue to have them. All we can do is try to let him know it is okay and keep a journal about them. If they get really frequent or severe we can consider anti-seizure meds. I am not sure I have much left in my emotional bank account to deal with all of this. I did let God know I was not happy about this and not sure what to do anymore. I also said there are 4 days left for the nonsense and stress of 2010 to get over with. I'm not doing this in 2011. Ryan just asked if that meant I was going to just keep a positive attitude next year. I said it was supposed to be an order that this stuff is going to stop but I know that I don't have any control over it. Sometimes I like to think I do and that what I say goes. Wishful thinking.
Well, the phone rang a few minutes ago. What do you know, it was disability. She said she should have the second physicians final report by the end of the week. Then she will finish up her final stuff and keep me posted. So I can probably expect at least another week and a half maybe two. Of course next week will probably be a short week. January 24th is getting closer and closer. I can feel the anger and the tears starting to build again. Not good. Time to pray...
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