So we have been having some major computer problems. I had thought the other day I made some good head way. Not everything was working but I was able to get on my blog. I couldn't moderate any comments but I thought that was the only problem I was having. I went ahead and typed out a new post and then couldn't post it. I was mad I almost broke the computer for good. Luckily I didn't and now the computer issue is resolved. Too bad I don't have a much time to really write the post I want to. I guess it will have to wait for a day or two.
I did hear from disability and nothing was really different from what I had said last time. They are having a psychiatrist review my records. The claim rep was meeting with a physicain consultant, who is an internal medicine doc, to discuss what the infectious diease doc decided on his/her review. It dawned on me after the fact that disability took such issue with my diagnosis not coming from an infectious disease doctor yet they are meeting and confering about the Lyme with an internal medicine doc. That doesn't make sense to me. I guess nothing in this process makes sense though. I am hoping and praying that none of this will really matter because they are going to approve my claim and I can get on with my life.
I have so much more to say about that issue and some other stuff but time is running short. This weekend is crazy busy and I am hoping I can keep up. I know I need to be honest about when to call it quits. We probably can't stay out as late and I have to get my nap (which I didn't today). I have to remember to eat and drink my water and take my meds. I don't good when it's busy. I am forgetful and important things like meds get missed. Not good! I am working to work extra hard to stay on top of everything. Please pray for no bad herxes. I had a twitching episode last night that was not fun. The last thing I want to do is be at a Christmas party and start a full on twitching episode. Anyways...until I can get back and give you the scoop on me, the dog, what God has been doing, and my melt down, enjoy the Christmas season.
P.S. You know I always welcome your comments and questions.
Friday, December 17, 2010
Monday, December 13, 2010
I'll Make it Quick
Our laptop got a virus and is down for the count. We had not set up our desktop since we moved so I have been without a computer for at least a week, maybe longer. Anyways, I have been wanting to post so bad and finally came into to use my moms computer just to make a quick update. For a lymie and I guess any one else who is sick the laptop is huge because you can be in bed or on the couch and getting stuff done. Sitting in a desk chair at the computer doesn't work for me real well. We need to get the lap top squared away for sure.
I have had some emotional ups and downs lately. Was really blessed this past weekend when the fire fighters dropped off some food and presents for the girls. It is really easing our burden right now during Christmas. Thank you for that.
The new medication I started seems to be stirring things up. That is good but is feels terrible. Lots of pain and the creepy crawly weak feeling. My grip strength has gone away again and I just want to chop my arms and legs off. Next appt. is the 29th of December. Should be doing lots of blood work and will set the date for my surgery. I am waiting to hear the blood test results from my last appt. I should know today or tomorrow. The new automated system at the docs office never called and it has been about a month so I know the results are in.
As far as disability goes, well I don't even know what to say. I called last week and missed my return phone call (of course). I am waiting again for a call back. I did get a message and a letter that don't make me feel real hopeful. I guess my rep is meeting with the physician consultant to discuss the Lyme aspect. I believe that is the infectious disease doctor who reviewed my appeal. Because a second doctor from a different speciality reviewed the initial claim they want a second doctor of the same speciality to review the appeal. So that still needs to happen. The letter basically said although they attempted to complete the review in 45 days they didn't. They are fairly certain they should have it completed before 90 days which is the end of January. This will have taken only 6 to 7 months. I really am trying to not lose my mind. I know talking to the rep is not going to change anything but I need them to know, as nicely as I can, that this is not okay. They are messing with my life and I don't think they get it. I also want to make sure they understand that I continued to work for a little while after being diagnosed with Lyme and starting treatment. They are looking at this past two years of medical records as a bunch of separate things. I don't think they get the fact that all of my problems for the past two years and more like the past 15 to 20 are due to Lyme. Once I was diagnosed and knew what I needed to do to get better it made working difficult. Then I started treatment and things really got worse. That is what happens with Lyme. They are acting like well you didn't ask to go off of work due to heart issues before. Well did you notice how many ER visits, doctors visits, and tests were run on me during the past two years for my heart and how much work I missed due to all that. How could I ask to go out when I was being told it was nothing serious and to not worry about it. I didn't go out on disability due to ADD, depression, anxiety or anything else but certainly missed a lot of work to deal with those issues. The pain, the neuropathy, the fibromyalgia, the ADD, the sinus tach, the depression, the anxiety, etc...are all Lyme. Why is that so hard to understand. They can ask a second psychiatrist to review my appeal but the psych doctor is not putting me out and it is not that issue alone. It is part of the Lyme. Do you get it yet? Needless to say, I am trying to not lose hope but seriously, I am not feeling really good about this anymore. I can't assume because they are taking so long that is a good thing. They took 75 days to review it the first time and deny it. You have 3 doctors licensed in the state of CA who say this is what I have, what my treatment is, and what I am going through. Yet they have one doc look at the Lyme and say no. I also was wondering if the doctor reviewing my case is licensed in the state of CA and if that is a requirement. I would love to have that in my back pocket...you had a doctor that was supposed to be licensed in my state to review my claim and they weren't. I need to look that up. So that's it for my quick or not so quick update. Hopefully I can write a good post soon. Until then....please keep praying for me and my family.
I have had some emotional ups and downs lately. Was really blessed this past weekend when the fire fighters dropped off some food and presents for the girls. It is really easing our burden right now during Christmas. Thank you for that.
The new medication I started seems to be stirring things up. That is good but is feels terrible. Lots of pain and the creepy crawly weak feeling. My grip strength has gone away again and I just want to chop my arms and legs off. Next appt. is the 29th of December. Should be doing lots of blood work and will set the date for my surgery. I am waiting to hear the blood test results from my last appt. I should know today or tomorrow. The new automated system at the docs office never called and it has been about a month so I know the results are in.
As far as disability goes, well I don't even know what to say. I called last week and missed my return phone call (of course). I am waiting again for a call back. I did get a message and a letter that don't make me feel real hopeful. I guess my rep is meeting with the physician consultant to discuss the Lyme aspect. I believe that is the infectious disease doctor who reviewed my appeal. Because a second doctor from a different speciality reviewed the initial claim they want a second doctor of the same speciality to review the appeal. So that still needs to happen. The letter basically said although they attempted to complete the review in 45 days they didn't. They are fairly certain they should have it completed before 90 days which is the end of January. This will have taken only 6 to 7 months. I really am trying to not lose my mind. I know talking to the rep is not going to change anything but I need them to know, as nicely as I can, that this is not okay. They are messing with my life and I don't think they get it. I also want to make sure they understand that I continued to work for a little while after being diagnosed with Lyme and starting treatment. They are looking at this past two years of medical records as a bunch of separate things. I don't think they get the fact that all of my problems for the past two years and more like the past 15 to 20 are due to Lyme. Once I was diagnosed and knew what I needed to do to get better it made working difficult. Then I started treatment and things really got worse. That is what happens with Lyme. They are acting like well you didn't ask to go off of work due to heart issues before. Well did you notice how many ER visits, doctors visits, and tests were run on me during the past two years for my heart and how much work I missed due to all that. How could I ask to go out when I was being told it was nothing serious and to not worry about it. I didn't go out on disability due to ADD, depression, anxiety or anything else but certainly missed a lot of work to deal with those issues. The pain, the neuropathy, the fibromyalgia, the ADD, the sinus tach, the depression, the anxiety, etc...are all Lyme. Why is that so hard to understand. They can ask a second psychiatrist to review my appeal but the psych doctor is not putting me out and it is not that issue alone. It is part of the Lyme. Do you get it yet? Needless to say, I am trying to not lose hope but seriously, I am not feeling really good about this anymore. I can't assume because they are taking so long that is a good thing. They took 75 days to review it the first time and deny it. You have 3 doctors licensed in the state of CA who say this is what I have, what my treatment is, and what I am going through. Yet they have one doc look at the Lyme and say no. I also was wondering if the doctor reviewing my case is licensed in the state of CA and if that is a requirement. I would love to have that in my back pocket...you had a doctor that was supposed to be licensed in my state to review my claim and they weren't. I need to look that up. So that's it for my quick or not so quick update. Hopefully I can write a good post soon. Until then....please keep praying for me and my family.
Wednesday, December 1, 2010
Lyme-A Good Summary
I came across an article or paper on a website earlier in the year when I was researching Lyme Disease. It is probably the greatest summary of late stage Lyme I have ever read. I know I have shared this with a few close friends and family but realized everyone may benefit from reading this. I hope you get a better understanding of Lyme and what it can entail from this. It really helped me to know what to expect...
Late Stage Lyme Disease, Patient Information
Can't lie to ya. Rough road ahead. In fact, getting well may be about the hardest and most difficult thing you'll ever do. But it's worth it! Stick with it! Never give up hope!
The first thing you should know is that it gets worse before it gets better. It can in fact get a lot worse before it gets better. It depends on how long you've had it, how much of the bacteria has built up, what strain you have, and many other factors as well.
The Lyme bacteria gives off a chemical toxin when it dies. When the antibiotics start killing them, the toxin levels in your body will soar and the symptoms can become intense. Physical symptoms include pain, numbness, swelling, tremors, and a myriad of others if internal organs are significantly affected. The toxin affects your mind as well. Typical symptoms include insomnia, confusion, disorientation, depression, anxiety and panic attacks. These will all go away as you get well!
As if the toxin affects weren't good enough, another fact about the Lyme bacteria is that is grows and reproduces slowly. At first that may seem a good thing, except that antibiotics are generally able to kill it only during certain stages of it's life cycle. The end result being that it takes a long time to get well, usually months. (Side note, I read something the other day that said to estimate 3 months of getting well for every year you have been sick. That makes my docs estimate of 3 years to hopefully be done with this about right. 3 years minimum) There have been cases of "miracle" cures in just a couple weeks, but these are rather rare. Just don't give up hope! Keep at it! Keep trying. It takes along time, but being happy and healthy again is worth it!
Of course we'd all probably like to have our mind functioning properly again as the first step in getting well. Unfortunately, that won't happen. your mind returns last, when just about all the bacteria are dead. Physical symptoms like pain and numbness go first, then the bacteria that didn't cause pain, and then, finally, your head begins to clear up. This can be very disconcerting when your body feels good but your head is still reeling. hang in there!
When you first start on effective antibiotics, you'll be in for quite an unpleasant surprise. Within a day or two you'll feel like you've been hit by a fully loaded military cargo jet flying at full throttle. your symptoms, including the ones you didn't even know you had, will flare up intensely. Try hard to tough it out. But if you find that you absolutely positively can't, and this is not too unusual, ask your doctor about lowering the dosage for a while, or pulsing on and off until you get through the worst of it. (This is why we started with herbal things first. The doc was sure I would end up in the hospital if we went straight to antibiotics) Sticking on the medication as prescribed, always taking them right on time, is your best bet for getting through it as quickly as possible. Don't give those nasty little bacteria an inch! This can be really tough, because it takes at least a few weeks (6-8), and sometimes much more to get through the brutally hard part.
If when you start your antibiotics, your symptoms don't flare severely, including ones you didn't know you had, then you may have a strain that is resistant to that particular antibiotic. Or, perhaps, your body is fighting the antibiotic and not letting it do its job properly. This is one reason that two antibiotics are often used at the same time. (Try 4 or 5) It is a judgment call between you and your doctor as to whether the antibiotics are being effective, and what might need to be done if they aren't.
Which set of symptoms, the physical or the psychological, will be the most difficult to handle is entirely up to the individual. Are you more physically oriented? Or are you a thinker? Some people are so happy-go-lucky and full of faith that nothing at all bothers them. In fact, may people are. you can be like them too. Just don't bother to worry about it! You're on the right road. The road to being happy, healthy and normal again!
Is it contagious? The answer is: no one knows. Spouses and siblings tend to all travel in the same places, so it is hard to tell if the disease was transmitted person to person or just infectious bites by different ticks. The long answer is: that since it's a blood-borne disease, as long as you don't go around biting people and bleeding on them, then not, it's not. As always though, better safe than sorry. (Everything I have read and heard from doctors says mom can definitely pass it to baby while pregnant, it is unclear at this point if spouses can pass it sexually)
A few annoyances you may encounter along the way, and should be made aware of if you're the worrying sort:
1. Confusion/Disorientation. Your short-term memory will probably be taking a nice long vacation. You may find yourself confused about where you are and what you're doing every time the scenery changes. Like when walking from one room to another, or driving. DON'T! (I don't drive long distances any more) Sometimes even when just sitting or lying around doing nothing. It could also be even more intense, with temporary bouts of amnesia. But it's a fact of life that vacations do end. This one tends to be about the most disconcerting psychological symptom for most people. Again though, it's caused by the toxin release from the dying bacteria. It will get better and eventually go away!
2. Numbness. Various parts of your body, both those you knew were infected and those you didn't, may go numb for a period of time. (Before I was diagnosed, I was at the computer and one side of face went numb for a minute or two. I thought I was having a stroke.) Quite often it's just for a day or so, but can also last for many weeks, until enough of the bacteria in that location have been killed that the toxin level finally drops. Don't panic! They all come back! The numb part that is! They'll eventually switch from numb to painful, and then finally to normal.
3. Pain. Same as 2), but may be sporadic pains instead of numbness.
4. It's in more places than you know. While you are on effective antibiotics the bacteria are NOT spreading. never had a problem with your back, but now it hurts? Forearms maybe? Wrists? They hurt now because the bacteria were there all along, and now that they're dying they're releasing toxins. It's the toxin from the dying bacteria that causes the numbness and pain. Dead bacteria is a good thing!
5. Insomnia. And not just at night either. you may find it impossible to nap during the day at all. you may get to enjoy every last minute of the worst part. As the toxin levels fall though, you'll be able to sleep better and better.
6. Hallucinations and voices. These can occur during times when your mind and body are exhausted but the toxins won't let you sleep. you may be trying to rest, but your brain gets stuck halfway between sleep and awake, dreams and reality mix. (Haven't really had this problem but my dreams are CRAZY!) Better sleep at night, along with less activity during the day, should help these symptoms disappear. Ask your doctor about sleeping aids you can use if necessary. However, if you get these symptoms while you're wide awake and have gotten reasonable sleep, consult your doctor immediately.
7. Tremors, shakes, and spasms. Can occur in various places to varying degrees. The length of time they last varies as well. These may be caused by bacteria dying near, and hence irritating, a nerve which controls motion.
8. Sweats, hot, cold, day, and night. Get used to them. You might consider adding just a bit of extra salt to your diet so you don't become salt/sodium deficient.
9. Fireworks, popcorn, or pin-cushion pains. These tend to feel like someone has picked a part of your body and decided to jab it with a pin a few times. Then they go and pick another spot. These are probably just irritations of pain nerves, or perhaps bacteria dying inside a nerve itself. You might notice that they tend to occur in your most affected areas, and that more effective antibiotics cause more of them.
10. Heart palpitations or irregularities. Notify your doctor immediately so that they can determine if the irregularities are severe enough t be dangerous. In some extreme cases, people have been put on a temporary pace maker until the worst of the symptoms have disappeared.(I hate the heart issues. I knew I had a high heart rate since at least high school but it wasn't bothersome until more recently. Would love for it go away when this all done.)
11. Dizziness and Vertigo. It's everywhere else, why be surprised that it's in your ears? Symptoms here can range from a feeling of "walking through jello" to complete loss of orientation.
12. Temporary Amnesia. really this is just an extension of memory loss symptoms, except that instead of just losing your short-term memory and sometimes long-term memory can go for a hike as well. These symptoms can last anywhere from just a few minutes, to a few weeks, and will probably only occur during the first month or so of treatment.
13. Aliens Under My Skin. Usually felt in the forearms or shins bun can occur anywhere, this feels for all the world like little turtle-shaped aliens crawling around in the affected area. (I call it the creepy crawly feeling, below the knees and in the forearms for me) These are actually associated with an attack by your own immune system against the bacteria and are probably the result of localized swelling and toxin releases from the bacteria dying under the attack.
14. Sudden bouts of weakness and symptom flares. Your body is fighting the bacteria alongside the antibiotics. But your body isn't always a nice steady predictable stream. Occasionally, and even frequently during the first cycle or two, your body will attack. Sometimes with an all-out-vengeance that will literally leave your knees weak and you panting for breath. In extreme cases, this can actually cause fainting. This can be very disconcerting if you are not expecting it. As long as your heart rate and blood pressure are OK, the you're probably fine. go over your drug allergy checklist and consult your doctor if you think it might be a delayed reaction to antibiotics. Normally, this feeling will drop in intensity within a few minutes.
15. Headaches. Can range from not at all if you're really lucky, to some really intense head-splitters. Do whatever you can to survive them.
16. Disconnection. Close your eyes, now where is your arm? OK, look at it now. Doesn't really feel like it looks where it is, does it? The extreme of this symptom is a complete out-of-body experience. As toxin levels fall, you should become more and more re-connected to your body again. An there you were thinking that you were just getting really good at your Yoga exercises...
17. Panic Attacks. you don't want to get these really, you don't. It's a feeling of "Oh my gosh, I'm going to b like this forever, I can't take it please, somebody just kill me and get it over with..." The only possible good thing about this symptom is that it goes away.
18. Bright Colors. Your pupils may dilate a bit. Indeed, you may find yourself wearing sunglasses, inside!
19. Hypersensitive Hearing. your ears may become hypersensitive to sound. In extreme cases, sound, even very quiet ones, can become painful.
20. Mood Swings, Irritability/Short Temper, Erratic Behavior. Again, all due to the toxin's effect on your mind. These will all clear up as you get well. These symptoms can be especially difficult for those around you to deal with. (Ask my husband about this one)
21. Yo-Yo. You'll be feeling like one. Up one minute, down the next. You might wake up feeling great one day, only to find that a couple hours later you're back feeling horrible again. Up, down, up, down, all around. Slowly, month after month, the downs will stop being quite so low, and eventually go away.
22. Whatever Else. Everyone is different, and the disease is quite well known these days for just how differently it affects different people. Any other significant symptoms that you are concerned about should be discussed with your doctor.
I decided to cut this short. The rest goes on to talk about some of the treatment and general things to help like diet,stretching, etc...and how to chart symptoms. This at least gives you a good idea, if you didn't have one already, of what this disease can do to you. I have had some form of I think everyone of those symptoms (except maybe the hallucinations) and some other ones. It is certainly a crazy ride. I guess that's it until I figure out something else to talk about.
Late Stage Lyme Disease, Patient Information
Can't lie to ya. Rough road ahead. In fact, getting well may be about the hardest and most difficult thing you'll ever do. But it's worth it! Stick with it! Never give up hope!
The first thing you should know is that it gets worse before it gets better. It can in fact get a lot worse before it gets better. It depends on how long you've had it, how much of the bacteria has built up, what strain you have, and many other factors as well.
The Lyme bacteria gives off a chemical toxin when it dies. When the antibiotics start killing them, the toxin levels in your body will soar and the symptoms can become intense. Physical symptoms include pain, numbness, swelling, tremors, and a myriad of others if internal organs are significantly affected. The toxin affects your mind as well. Typical symptoms include insomnia, confusion, disorientation, depression, anxiety and panic attacks. These will all go away as you get well!
As if the toxin affects weren't good enough, another fact about the Lyme bacteria is that is grows and reproduces slowly. At first that may seem a good thing, except that antibiotics are generally able to kill it only during certain stages of it's life cycle. The end result being that it takes a long time to get well, usually months. (Side note, I read something the other day that said to estimate 3 months of getting well for every year you have been sick. That makes my docs estimate of 3 years to hopefully be done with this about right. 3 years minimum) There have been cases of "miracle" cures in just a couple weeks, but these are rather rare. Just don't give up hope! Keep at it! Keep trying. It takes along time, but being happy and healthy again is worth it!
Of course we'd all probably like to have our mind functioning properly again as the first step in getting well. Unfortunately, that won't happen. your mind returns last, when just about all the bacteria are dead. Physical symptoms like pain and numbness go first, then the bacteria that didn't cause pain, and then, finally, your head begins to clear up. This can be very disconcerting when your body feels good but your head is still reeling. hang in there!
When you first start on effective antibiotics, you'll be in for quite an unpleasant surprise. Within a day or two you'll feel like you've been hit by a fully loaded military cargo jet flying at full throttle. your symptoms, including the ones you didn't even know you had, will flare up intensely. Try hard to tough it out. But if you find that you absolutely positively can't, and this is not too unusual, ask your doctor about lowering the dosage for a while, or pulsing on and off until you get through the worst of it. (This is why we started with herbal things first. The doc was sure I would end up in the hospital if we went straight to antibiotics) Sticking on the medication as prescribed, always taking them right on time, is your best bet for getting through it as quickly as possible. Don't give those nasty little bacteria an inch! This can be really tough, because it takes at least a few weeks (6-8), and sometimes much more to get through the brutally hard part.
If when you start your antibiotics, your symptoms don't flare severely, including ones you didn't know you had, then you may have a strain that is resistant to that particular antibiotic. Or, perhaps, your body is fighting the antibiotic and not letting it do its job properly. This is one reason that two antibiotics are often used at the same time. (Try 4 or 5) It is a judgment call between you and your doctor as to whether the antibiotics are being effective, and what might need to be done if they aren't.
Which set of symptoms, the physical or the psychological, will be the most difficult to handle is entirely up to the individual. Are you more physically oriented? Or are you a thinker? Some people are so happy-go-lucky and full of faith that nothing at all bothers them. In fact, may people are. you can be like them too. Just don't bother to worry about it! You're on the right road. The road to being happy, healthy and normal again!
Is it contagious? The answer is: no one knows. Spouses and siblings tend to all travel in the same places, so it is hard to tell if the disease was transmitted person to person or just infectious bites by different ticks. The long answer is: that since it's a blood-borne disease, as long as you don't go around biting people and bleeding on them, then not, it's not. As always though, better safe than sorry. (Everything I have read and heard from doctors says mom can definitely pass it to baby while pregnant, it is unclear at this point if spouses can pass it sexually)
A few annoyances you may encounter along the way, and should be made aware of if you're the worrying sort:
1. Confusion/Disorientation. Your short-term memory will probably be taking a nice long vacation. You may find yourself confused about where you are and what you're doing every time the scenery changes. Like when walking from one room to another, or driving. DON'T! (I don't drive long distances any more) Sometimes even when just sitting or lying around doing nothing. It could also be even more intense, with temporary bouts of amnesia. But it's a fact of life that vacations do end. This one tends to be about the most disconcerting psychological symptom for most people. Again though, it's caused by the toxin release from the dying bacteria. It will get better and eventually go away!
2. Numbness. Various parts of your body, both those you knew were infected and those you didn't, may go numb for a period of time. (Before I was diagnosed, I was at the computer and one side of face went numb for a minute or two. I thought I was having a stroke.) Quite often it's just for a day or so, but can also last for many weeks, until enough of the bacteria in that location have been killed that the toxin level finally drops. Don't panic! They all come back! The numb part that is! They'll eventually switch from numb to painful, and then finally to normal.
3. Pain. Same as 2), but may be sporadic pains instead of numbness.
4. It's in more places than you know. While you are on effective antibiotics the bacteria are NOT spreading. never had a problem with your back, but now it hurts? Forearms maybe? Wrists? They hurt now because the bacteria were there all along, and now that they're dying they're releasing toxins. It's the toxin from the dying bacteria that causes the numbness and pain. Dead bacteria is a good thing!
5. Insomnia. And not just at night either. you may find it impossible to nap during the day at all. you may get to enjoy every last minute of the worst part. As the toxin levels fall though, you'll be able to sleep better and better.
6. Hallucinations and voices. These can occur during times when your mind and body are exhausted but the toxins won't let you sleep. you may be trying to rest, but your brain gets stuck halfway between sleep and awake, dreams and reality mix. (Haven't really had this problem but my dreams are CRAZY!) Better sleep at night, along with less activity during the day, should help these symptoms disappear. Ask your doctor about sleeping aids you can use if necessary. However, if you get these symptoms while you're wide awake and have gotten reasonable sleep, consult your doctor immediately.
7. Tremors, shakes, and spasms. Can occur in various places to varying degrees. The length of time they last varies as well. These may be caused by bacteria dying near, and hence irritating, a nerve which controls motion.
8. Sweats, hot, cold, day, and night. Get used to them. You might consider adding just a bit of extra salt to your diet so you don't become salt/sodium deficient.
9. Fireworks, popcorn, or pin-cushion pains. These tend to feel like someone has picked a part of your body and decided to jab it with a pin a few times. Then they go and pick another spot. These are probably just irritations of pain nerves, or perhaps bacteria dying inside a nerve itself. You might notice that they tend to occur in your most affected areas, and that more effective antibiotics cause more of them.
10. Heart palpitations or irregularities. Notify your doctor immediately so that they can determine if the irregularities are severe enough t be dangerous. In some extreme cases, people have been put on a temporary pace maker until the worst of the symptoms have disappeared.(I hate the heart issues. I knew I had a high heart rate since at least high school but it wasn't bothersome until more recently. Would love for it go away when this all done.)
11. Dizziness and Vertigo. It's everywhere else, why be surprised that it's in your ears? Symptoms here can range from a feeling of "walking through jello" to complete loss of orientation.
12. Temporary Amnesia. really this is just an extension of memory loss symptoms, except that instead of just losing your short-term memory and sometimes long-term memory can go for a hike as well. These symptoms can last anywhere from just a few minutes, to a few weeks, and will probably only occur during the first month or so of treatment.
13. Aliens Under My Skin. Usually felt in the forearms or shins bun can occur anywhere, this feels for all the world like little turtle-shaped aliens crawling around in the affected area. (I call it the creepy crawly feeling, below the knees and in the forearms for me) These are actually associated with an attack by your own immune system against the bacteria and are probably the result of localized swelling and toxin releases from the bacteria dying under the attack.
14. Sudden bouts of weakness and symptom flares. Your body is fighting the bacteria alongside the antibiotics. But your body isn't always a nice steady predictable stream. Occasionally, and even frequently during the first cycle or two, your body will attack. Sometimes with an all-out-vengeance that will literally leave your knees weak and you panting for breath. In extreme cases, this can actually cause fainting. This can be very disconcerting if you are not expecting it. As long as your heart rate and blood pressure are OK, the you're probably fine. go over your drug allergy checklist and consult your doctor if you think it might be a delayed reaction to antibiotics. Normally, this feeling will drop in intensity within a few minutes.
15. Headaches. Can range from not at all if you're really lucky, to some really intense head-splitters. Do whatever you can to survive them.
16. Disconnection. Close your eyes, now where is your arm? OK, look at it now. Doesn't really feel like it looks where it is, does it? The extreme of this symptom is a complete out-of-body experience. As toxin levels fall, you should become more and more re-connected to your body again. An there you were thinking that you were just getting really good at your Yoga exercises...
17. Panic Attacks. you don't want to get these really, you don't. It's a feeling of "Oh my gosh, I'm going to b like this forever, I can't take it please, somebody just kill me and get it over with..." The only possible good thing about this symptom is that it goes away.
18. Bright Colors. Your pupils may dilate a bit. Indeed, you may find yourself wearing sunglasses, inside!
19. Hypersensitive Hearing. your ears may become hypersensitive to sound. In extreme cases, sound, even very quiet ones, can become painful.
20. Mood Swings, Irritability/Short Temper, Erratic Behavior. Again, all due to the toxin's effect on your mind. These will all clear up as you get well. These symptoms can be especially difficult for those around you to deal with. (Ask my husband about this one)
21. Yo-Yo. You'll be feeling like one. Up one minute, down the next. You might wake up feeling great one day, only to find that a couple hours later you're back feeling horrible again. Up, down, up, down, all around. Slowly, month after month, the downs will stop being quite so low, and eventually go away.
22. Whatever Else. Everyone is different, and the disease is quite well known these days for just how differently it affects different people. Any other significant symptoms that you are concerned about should be discussed with your doctor.
I decided to cut this short. The rest goes on to talk about some of the treatment and general things to help like diet,stretching, etc...and how to chart symptoms. This at least gives you a good idea, if you didn't have one already, of what this disease can do to you. I have had some form of I think everyone of those symptoms (except maybe the hallucinations) and some other ones. It is certainly a crazy ride. I guess that's it until I figure out something else to talk about.
Tuesday, November 30, 2010
The Meatloaf Made Me Cry
I hope everyone had a wonderful Thanksgiving. I definitely did. Wonderful food, wonderful friends, and so much to be thankful for. Although this has probably been the toughest year of my life it has also been amazing. I finally know what I am up against to some degree. Even though the Lyme can be unpredictable and I don't know for sure how sick I am or how long it will before I get better I have a name. That alone gives me hope. I have been blessed beyond measure in these past few months. God has used people in my life to help my family get by when I was sure our world was going come crashing down. You know the saying that "Everything happens for a reason"? It is interesting to think about the people that God has used in my life recently and how they even got here. It is really cool to think about if a whole bunch of decisions in my life led me to this very moment because God was planning all along how He was going to handle this. If that makes any sense. So anyways...I am just very thankful!
Nothing much changed over the holidays. I probably over did it a little bit. I mean I went a few days without a nap and that can do me in. I'm still in pain, mainly joint pain or bone pain. I have muscle spasms most days, usually in my eye or my arm. At least they aren't painful. I haven't had very much twitching which is good. I am super emotional and can cry at almost anything. I am also a little short tempered and still tired.
I realize I may have said some of this before. I had gone a while without being very temperature sensitive but it has come back. My feet are cold almost 24-7. I have to take a hot shower or bath to try and warm up, sometimes twice a day. The temperature thing can be very painful. I remember over the past few years times where the tips of my fingers would get so could they would start to go numb. They never got to where I couldn't feel them but just to the point that they were super painful to touch. I always thought that was weird. It's not like I had been out in the snow without gloves or anything. Now at least I know why. I have never asked but I am guessing it is part of the nerve stuff. Being in the freezer or dairy section of the grocery store can be painful. It is very frustrating. This is what brought me to tears while I was making dinner last night. I decided to make turkey meatloaf. I realized as I was getting everything out that this was going to be painful. Who ever thought making meatloaf could be painful? I had been here before. I knew what was probably going to happen and I was right. I put everything in the bowel and went to mix it up with my hands and sure enough with in a matter of seconds my fingers were in so much pain. I could only mix everything up for about 5 seconds before I had to run my hands under hot water. The pain made me start to cry. How silly that I was crying over making meatloaf but it hurt so bad and I was frustrated so the tears just happened. I did successfully make dinner and the family didn't even know how bad it hurt. I realize you may be reading this and saying why didn't you ask for help? It just feels like so much has been taken away from me already that I try to hold on what few things I have left. Making dinner is one of them.
I'm looking forward to Christmas and trying not to worry about the disability issue. I will get my answer when I am supposed to and worrying about what it is going to be will not change the outcome. I am trying not to think about the port and new medicine and just take each day as it comes. I have been reading a lot of my fellow Lymies blogs. My heart breaks for them every time I read about their struggles. Each one of them and their families are going through so much. I am determined to do my part to help educate people about this disease and do what I can to help others in need. I guess that is all for now. Thanks for stopping by and checking in.
Nothing much changed over the holidays. I probably over did it a little bit. I mean I went a few days without a nap and that can do me in. I'm still in pain, mainly joint pain or bone pain. I have muscle spasms most days, usually in my eye or my arm. At least they aren't painful. I haven't had very much twitching which is good. I am super emotional and can cry at almost anything. I am also a little short tempered and still tired.
I realize I may have said some of this before. I had gone a while without being very temperature sensitive but it has come back. My feet are cold almost 24-7. I have to take a hot shower or bath to try and warm up, sometimes twice a day. The temperature thing can be very painful. I remember over the past few years times where the tips of my fingers would get so could they would start to go numb. They never got to where I couldn't feel them but just to the point that they were super painful to touch. I always thought that was weird. It's not like I had been out in the snow without gloves or anything. Now at least I know why. I have never asked but I am guessing it is part of the nerve stuff. Being in the freezer or dairy section of the grocery store can be painful. It is very frustrating. This is what brought me to tears while I was making dinner last night. I decided to make turkey meatloaf. I realized as I was getting everything out that this was going to be painful. Who ever thought making meatloaf could be painful? I had been here before. I knew what was probably going to happen and I was right. I put everything in the bowel and went to mix it up with my hands and sure enough with in a matter of seconds my fingers were in so much pain. I could only mix everything up for about 5 seconds before I had to run my hands under hot water. The pain made me start to cry. How silly that I was crying over making meatloaf but it hurt so bad and I was frustrated so the tears just happened. I did successfully make dinner and the family didn't even know how bad it hurt. I realize you may be reading this and saying why didn't you ask for help? It just feels like so much has been taken away from me already that I try to hold on what few things I have left. Making dinner is one of them.
I'm looking forward to Christmas and trying not to worry about the disability issue. I will get my answer when I am supposed to and worrying about what it is going to be will not change the outcome. I am trying not to think about the port and new medicine and just take each day as it comes. I have been reading a lot of my fellow Lymies blogs. My heart breaks for them every time I read about their struggles. Each one of them and their families are going through so much. I am determined to do my part to help educate people about this disease and do what I can to help others in need. I guess that is all for now. Thanks for stopping by and checking in.
Monday, November 22, 2010
Stuff
I couldn't figure out what to call this post if you couldn't tell. My brain is not at it's full working potential suprise, suprise. This may just be a quick update or I may get sidetracked and go on forever. I never know. Well anyways, I want and saw the doc today. We discussed a lot of the same things I discussed with my LLND last week. I also needed to clarify for myself what a herx really was. I just wanted to make sure that I was accurately relaying to my doctors what was going on. So my average day to day feeling is just how I feel with Lyme. The days that I get slammed with pain or extreme fatigue or twitching, those are herxes. It does make sense that I seem to have more herxes about every 4 weeks. If I understand correctly, about every 4 to 6 six weeks the Lyme bacteria spread or hatch. During that time my meds are killing those bacteria which then in turn causes them to release toxins. Thats why I herx. Once I got that straight, we discussed the use of Levaquin just in case I have Bartonella. The doc agrees. He just said to make sure that if I started have tendonitis type pain or joint pain (I'm guessing it is different than the joint pain I already have)that I stop taking the medication. I guess all I can do is try it. I asked how do we really know if what we are doing is working? He said it really has to do with how I feel. I don't feel any better yet for sure. He said we may see an increase in my CD-57 numbers also. We decided to do a bunch of blood work (7 viles). I know we did another CD-57 and a heavy metal screening test. The heavy metal screening I guess will give us an idea if we should do the other testing for heavy metal. Then we discussed the chest port. So it is an out patient procedure I will have done at the hospital. We are shooting for the first or second week in Janurary to have it put in. The medication may have come down in price a little it looks like $20 a day or $80 a week since I only use it 4 days a week. I still do not know how much the rest of the supplies cost but I am hoping to come in under that original $250 a week number. The doctors best guess on procedure price was $4000. I have called the hospital twice and left messages and still gotten no return phone call. One of the calls was last week. I figure they would want to provide you this information so you can make your plan ahead of time to pay for everything. I did talk to the insurance today and it sounds like I should have no problem getting coverage for the port placement. If the $4000 is right, we will pay about $1300. At least I feel like we are getting somewhere. The doctor did offer to refer me to some good docs in Mexico that will do it for half the price. No offense intended but I am not comfortable with that for a few reasons. I guess that covers the doc appt for the most part. I am interested to see what my blood work says. So I go back next month for a followup and the blood work needed for the port.
Nothing new with disability. My appeal is being reviewed by an infectious disease doctor. I won't call to check up until next week. I am sure they are off Thursday and Friday like most people so that will slow things up a few days. I am trying to not worry about it all but as I have said a hundred times, it is hard. I know God has provided so far and I am sure He will continue to do so. It is kind of funny that we got hit with an unexpected bill (very long story) and we are just to the point where things the money is really starting to get short. Just when I got down about things this weekend I got a message from a friend who has something up their sleeve. We haven't been able to connect yet so I don't know what's up. Big or small I am excited and reminded that once again we are not alone in this. I will admit I am really working on trying to change my approach to this holiday season and my perspective on things. Over the last year or two I have tried to not spend so much on the gifts. I know that is not what the holiday is supposed to be about. I realize now how much I let it dominate the holidays. I enjoy giving gifts to other people. I want to be in line at the Starbucks drive through and be buying coffee for the people behind me. I want to try and make a "black friday" shopping trip. Those are some of the things I am having to give up this year. I know we are going to be blessed with an amazing Christmas and that we have so much to be thankful for this Thanksgiving...it is just going to take a little getting used to. This year more than any so far, it will be about the Birth of Jesus and the blessings of friends and family and our time together. That is what matters most. We can have a wonderful time without all of the stuff and spending all of the money. I guess it is time for some new traditions! I hope you all have a wonderful Thanksgiving. I especially pray all of my fellow Lymies feel good enough to enjoy some great food and fellowship with those they love this week.
Nothing new with disability. My appeal is being reviewed by an infectious disease doctor. I won't call to check up until next week. I am sure they are off Thursday and Friday like most people so that will slow things up a few days. I am trying to not worry about it all but as I have said a hundred times, it is hard. I know God has provided so far and I am sure He will continue to do so. It is kind of funny that we got hit with an unexpected bill (very long story) and we are just to the point where things the money is really starting to get short. Just when I got down about things this weekend I got a message from a friend who has something up their sleeve. We haven't been able to connect yet so I don't know what's up. Big or small I am excited and reminded that once again we are not alone in this. I will admit I am really working on trying to change my approach to this holiday season and my perspective on things. Over the last year or two I have tried to not spend so much on the gifts. I know that is not what the holiday is supposed to be about. I realize now how much I let it dominate the holidays. I enjoy giving gifts to other people. I want to be in line at the Starbucks drive through and be buying coffee for the people behind me. I want to try and make a "black friday" shopping trip. Those are some of the things I am having to give up this year. I know we are going to be blessed with an amazing Christmas and that we have so much to be thankful for this Thanksgiving...it is just going to take a little getting used to. This year more than any so far, it will be about the Birth of Jesus and the blessings of friends and family and our time together. That is what matters most. We can have a wonderful time without all of the stuff and spending all of the money. I guess it is time for some new traditions! I hope you all have a wonderful Thanksgiving. I especially pray all of my fellow Lymies feel good enough to enjoy some great food and fellowship with those they love this week.
Thursday, November 18, 2010
Desperate Measures
Desperate measures. That's what I feel like I went to today. If only I would have known it would cause me have one of my worst days so far. So I guess I should tell you what this desperate measure was. I found out about a doc that owns the Hansa Wellness Center in Wisconsin. It sounds like an incredible place that uses all sorts of therapies to treat all sorts of issues, including Lyme. I was reading an article on detox yesterday and Dr. David's recommendation for a detox bath. It was certainly different than anything I had heard of before and I decided to give it a try. Here is a quick run down of the ingredients- goats milk, raw sugar, sea salt, two egg yolks, horsetail herb powder, and lemon. You mix it all with warm water and soak for 20 minutes. You don't rinse off just towel dry. He recommends doing it about once a week and doing it at night so you can sleep and let your body work on some repair. He also said it's really helpful for those with low body temperature, which would be me. My husband thought I was nuts. I thought it definitely sounds a little weird but one of the main issues with Lyme is not being able to remove all of the toxins from the dying bacteria quickly enough. So I dropped the kids off at school, got the ingredients together, and decided to do it first thing. A few minutes into the bath I started to feel a little sore. I have been feeling that way the last day or two so I wasn't necessarily surprised. After 20 minutes, I got out and felt like I could just go to sleep. I decided to eat something,take my morning meds and then lay down. I definitely started hurting more in both my muscles and joints/bones. I fell asleep for about an hour and half and work up super nauseous. It was about 20 to 30 minutes of trying not get sick. I didn't. I wasn't feeling sick to my stomach any more but still had the pain. I managed to just make it my daughters Thanksgiving celebration at school but felt bad and wanted to come right home. I have slept most of the rest of the day and have continued to be in probably the worst pain since I started my treatment. I guess the bath really stirred something up which is good but it sucks that it is has to feel so bad.
I guess a quick update from the doc is in order then I am done for the night. I had a phone appointment with my LLND yesterday. We discussed that there is nothing really new going on and the fact that I don't feel any better. She said she feels like I am sill on a good course of meds and supplements. I told her about my visit to the infectious disease doc and what she said, and the fact that in the next month or so we should be putting in the chest port and starting a minimum of a 6 month course of IV Rocephin. She said that sounded okay but that she was thinking maybe we are missing something because I haven't seen any improvement. So she would like me to do a 30 day course of Levaquin before the IV. The Levaquin could help if I have a co-infection of Bartonella that didn't show up on the blood work. The scary thing about Levaquin is that it can cause tendon damage. For some people they can end up with bad tendinitis and if you don't take care of it the tendon(s) can rupture. That sounds fun. I realize she wouldn't recommend it if the benefits didn't out way the risks but wow, that is a little crazy. She told me to run it by my pcp doc on my appointment next week and make sure he is on board. We also discussed the possibility of heavy metal toxicity. I was reading, from Dr. David again, that one of the major causes of low body temperature is heavy metal toxicity. (Mainly platinum and I forgot the other one) Either way, I knew we should look into this at some point anyway and the doc agreed. She said at some point we should do a test. We can do it whenever but it didn't have to be done before the IV. I guess we will wait until I figure out the money situation and go from there. We didn't discuss how much it would cost but I am sure it is not totally cheap. That was about all from the LLND. I will see my pcp this coming week and will know much more then.
In closing I did start reading "Primal Blueprint" that my pcp wanted me to read. It is a little much for me but in general the basic eating principals involve-lots protein, fruits and veggies. The author says fat content doesn't matter and a structured eating schedule doesn't matter. All of investigation and research have taught him that insulin is the major issue with body fat, weight loss, and all sort of health issues. He says fat and cholesterol aren't bad like we think. Even whole grains aren't great for us and cause problems and basically in my own words sugar is equal to the devil. I am going to give it a try as best I can. I am going to try and cut out a lot of the carbs from everything other than fruits and veggies. We will see if I feel any different. On another note, one of the meds I am on my LLND said was really expensive and if my insurance didn't cover it to forget taking it. I have been blessed that I have gotten 3 months of it without question. I found out the retail price the other day and oh my gosh...it is over $1700 a month. So crazy. So as I said, very blessed to have gotten this med for a few months. Nothing new about my appeal. Still in the process of being reviewed. Now I have to do the research and found out about my port and what insurance will or will not cover. Due to deductibles and out of pocket maxes that all reset in January I need to find out if it is better to try and do this before the first of the year or not. We will see. so unless something changes in the next few days, I will update after my doc appointment next week.
One last thing, God has continued to bless our family and get us through this tough time without my income. Thank you to all of my angels, who have been such a big help. You know who you are. Until next time...
I guess a quick update from the doc is in order then I am done for the night. I had a phone appointment with my LLND yesterday. We discussed that there is nothing really new going on and the fact that I don't feel any better. She said she feels like I am sill on a good course of meds and supplements. I told her about my visit to the infectious disease doc and what she said, and the fact that in the next month or so we should be putting in the chest port and starting a minimum of a 6 month course of IV Rocephin. She said that sounded okay but that she was thinking maybe we are missing something because I haven't seen any improvement. So she would like me to do a 30 day course of Levaquin before the IV. The Levaquin could help if I have a co-infection of Bartonella that didn't show up on the blood work. The scary thing about Levaquin is that it can cause tendon damage. For some people they can end up with bad tendinitis and if you don't take care of it the tendon(s) can rupture. That sounds fun. I realize she wouldn't recommend it if the benefits didn't out way the risks but wow, that is a little crazy. She told me to run it by my pcp doc on my appointment next week and make sure he is on board. We also discussed the possibility of heavy metal toxicity. I was reading, from Dr. David again, that one of the major causes of low body temperature is heavy metal toxicity. (Mainly platinum and I forgot the other one) Either way, I knew we should look into this at some point anyway and the doc agreed. She said at some point we should do a test. We can do it whenever but it didn't have to be done before the IV. I guess we will wait until I figure out the money situation and go from there. We didn't discuss how much it would cost but I am sure it is not totally cheap. That was about all from the LLND. I will see my pcp this coming week and will know much more then.
In closing I did start reading "Primal Blueprint" that my pcp wanted me to read. It is a little much for me but in general the basic eating principals involve-lots protein, fruits and veggies. The author says fat content doesn't matter and a structured eating schedule doesn't matter. All of investigation and research have taught him that insulin is the major issue with body fat, weight loss, and all sort of health issues. He says fat and cholesterol aren't bad like we think. Even whole grains aren't great for us and cause problems and basically in my own words sugar is equal to the devil. I am going to give it a try as best I can. I am going to try and cut out a lot of the carbs from everything other than fruits and veggies. We will see if I feel any different. On another note, one of the meds I am on my LLND said was really expensive and if my insurance didn't cover it to forget taking it. I have been blessed that I have gotten 3 months of it without question. I found out the retail price the other day and oh my gosh...it is over $1700 a month. So crazy. So as I said, very blessed to have gotten this med for a few months. Nothing new about my appeal. Still in the process of being reviewed. Now I have to do the research and found out about my port and what insurance will or will not cover. Due to deductibles and out of pocket maxes that all reset in January I need to find out if it is better to try and do this before the first of the year or not. We will see. so unless something changes in the next few days, I will update after my doc appointment next week.
One last thing, God has continued to bless our family and get us through this tough time without my income. Thank you to all of my angels, who have been such a big help. You know who you are. Until next time...
Monday, November 8, 2010
From the lightweights to the welterweights
Nothing really new to report on the disease front. I have had a nasty little bug for a week now and will be glad when it is over. I am thankful I had a little break from some of Lyme symptoms when the cold was at it worst. The joint and bone pain has kicked in again and is in some new places. I guess that means I am stirring up more bugs and they are dying. That is a great thing. I also had a twitching episode kick in while I was driving. Not cool. I still felt okay to drive but I was really nervous when I was sitting behind a CHP officer at a red light. I was afraid he would look in his mirror and then pull me over thinking I was high on something. I have had a queasy stomach and been lightheaded and dizzy the last couple of days. I don't know for sure if what that's all about. The whole dizzy/lightheaded thing is one of the worst for me. It is a horrible feeling and it doesn't seem to be just in my head, but my whole body. I can be laying down and it still feels like I could pass out. I can't stand it.
So I realized that I have been on my current antibiotics longer than I thought. That means the beginning of December could be the start of the IV meds. Of course I had to research the whole chest port thing on line. Not looking forward to it. Plus, I hate needles. Although I agrees that this seems better than the PICC line in my arm I don't like the idea of having to use needles to deliver the meds.
I am still completely stressed out about the whole money/disability thing. Let me say, if I didn't before, that the incredible bunch of guys that I work with came through in a big way and helped out my family and I just found out they are not done. I couldn't be more thankful or blessed to have them and their families in my life. I know that what they did for me was not possible without the blessing of their loved ones at home as well. I still haven't heard about disability. I guess it's only been about 2 weeks so I have another two or three weeks to go I am sure. My new claim rep seems good. We had a chance to talk and she understands the urgency. I admit though, I get completely panic stricken when I think about the fact that they could deny me. I don't have another chance to appeal. I guess the only thing I could do would be get a lawyer. I don't have the finances or the energy to deal with going to court. I guess I am being negative though and I am not trusting God. It would seem that God has blessed us and got us through this far so it should be that much easier to trust things are going to be fine. I am just being honest when I say it is hard. It's like He has done this much, so how much more can or will He do? I should be thinking, He has handled this and now has the opportunity to handle so much more. Let's see how this is going to go. I guess just being able to get these thoughts out in the open makes me realize where I am going wrong and how I do need to look forward in anticipation with what God is going to do.
I can't help but feel like we have to look at the finances when it comes to timing and all of my treatment. I have been spoiled with good insurance for my whole life. As I have said before, we recently changed insurance at work. Unfortunately the change wasn't so good. They were a lot of things that were different. I haven't really had to deal with deductibles and out of pockets maxs before. I guess with everything going on, I haven't kept up on what my new insurance really meant. So my 7 year old is sent to the cardiologist for an irregular heart beat. She has also recently started having some episodes of dizziness. (God please don't let it be Lyme) Her pediatrician refers us and we go to Children's Hospital. I am thinking all is good. We pay co-pays and what not. Then this weekend I get a bill for over $600. I have a $500 deductible and then they only pay 80% of rest. Of course I burst into tears upon opening the bill. I am still a little upset this morning over the whole thing. I need to call and set up a payment plan with them to get this bill paid. One of the bummers about this insurance issue is that we have open enrollment on a fiscal year. The deductibles and out of pocket max's on a calendar year. So come January, the $500 starts all over. In the next few days I really have to look at all of the in's and out's of my policy and figure out where I am at. I just need to know if there is serious financial gain to waiting until after the first of the year to have my port put in. I think either way, we are going to pay a lot out of pocket but it could be the difference of $500 or more and that is a lot.
I guess the biggest thing I can do about it all is pray. God has used some great people in our life to help us up until know so why should I think He would stop. A few months ago it seemed hopeless and now I can see how things worked out. It will be amazing to look back at this time when all is said and done and see the impossible have become the possible. It's out of my hands.
Here is to eating healthy, getting plenty of rest, not worrying and not giving up! FIGHT! I feel like I am moving up from the lightweights to the welterweights. Lord help me if I have to move all the way up to the heavy weights! :)
So I realized that I have been on my current antibiotics longer than I thought. That means the beginning of December could be the start of the IV meds. Of course I had to research the whole chest port thing on line. Not looking forward to it. Plus, I hate needles. Although I agrees that this seems better than the PICC line in my arm I don't like the idea of having to use needles to deliver the meds.
I am still completely stressed out about the whole money/disability thing. Let me say, if I didn't before, that the incredible bunch of guys that I work with came through in a big way and helped out my family and I just found out they are not done. I couldn't be more thankful or blessed to have them and their families in my life. I know that what they did for me was not possible without the blessing of their loved ones at home as well. I still haven't heard about disability. I guess it's only been about 2 weeks so I have another two or three weeks to go I am sure. My new claim rep seems good. We had a chance to talk and she understands the urgency. I admit though, I get completely panic stricken when I think about the fact that they could deny me. I don't have another chance to appeal. I guess the only thing I could do would be get a lawyer. I don't have the finances or the energy to deal with going to court. I guess I am being negative though and I am not trusting God. It would seem that God has blessed us and got us through this far so it should be that much easier to trust things are going to be fine. I am just being honest when I say it is hard. It's like He has done this much, so how much more can or will He do? I should be thinking, He has handled this and now has the opportunity to handle so much more. Let's see how this is going to go. I guess just being able to get these thoughts out in the open makes me realize where I am going wrong and how I do need to look forward in anticipation with what God is going to do.
I can't help but feel like we have to look at the finances when it comes to timing and all of my treatment. I have been spoiled with good insurance for my whole life. As I have said before, we recently changed insurance at work. Unfortunately the change wasn't so good. They were a lot of things that were different. I haven't really had to deal with deductibles and out of pockets maxs before. I guess with everything going on, I haven't kept up on what my new insurance really meant. So my 7 year old is sent to the cardiologist for an irregular heart beat. She has also recently started having some episodes of dizziness. (God please don't let it be Lyme) Her pediatrician refers us and we go to Children's Hospital. I am thinking all is good. We pay co-pays and what not. Then this weekend I get a bill for over $600. I have a $500 deductible and then they only pay 80% of rest. Of course I burst into tears upon opening the bill. I am still a little upset this morning over the whole thing. I need to call and set up a payment plan with them to get this bill paid. One of the bummers about this insurance issue is that we have open enrollment on a fiscal year. The deductibles and out of pocket max's on a calendar year. So come January, the $500 starts all over. In the next few days I really have to look at all of the in's and out's of my policy and figure out where I am at. I just need to know if there is serious financial gain to waiting until after the first of the year to have my port put in. I think either way, we are going to pay a lot out of pocket but it could be the difference of $500 or more and that is a lot.
I guess the biggest thing I can do about it all is pray. God has used some great people in our life to help us up until know so why should I think He would stop. A few months ago it seemed hopeless and now I can see how things worked out. It will be amazing to look back at this time when all is said and done and see the impossible have become the possible. It's out of my hands.
Here is to eating healthy, getting plenty of rest, not worrying and not giving up! FIGHT! I feel like I am moving up from the lightweights to the welterweights. Lord help me if I have to move all the way up to the heavy weights! :)
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