Wednesday, December 29, 2010

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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 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...

Monday, December 27, 2010

Merry Christmas

Merry Christmas! A few days late I know but still Merry Christmas. Funny how in my last post I thought I might be blogging everyday and it ended up being almost a week. Things got a little crazy to say the least so it wasn't until now that I felt up to posting something. To recap the last week...I decided to not call disability until this morning. I am waiting for my call back and if anything is new you can bet I will be updating later. I took Jenna (my 7 yr old) to the doctor for her stomach. To put it nicely, she was having plumbing issues if you know what I mean. So a little miralax and she seems to be doing much better. Brooke (my 4 yr old) has continued on with a super stuffy and runny nose. Trying to just use her saline spray and avoid the doctor. Unfortunately my husband and I both got a nasty cold or flu or whatever you want to call it. Mostly sinus type stuff. Ryan stayed home on Christmas Eve because he wasn't' feeling good and he was on call and was expecting to have to go into work. By the time the girls and I got home on Christmas Eve I was starting to feel bad. Christmas morning it was on and I felt miserable. So all Christmas day and all yesterday I was miserable. I am very limited on what I can take so that makes things worse. I am trying to limit over the counter medications however, I could have drunk half a bottle of NyQuil and slept for two days straight and felt much better. No such luck though. To add to it all I am thinking I am working on a Kidney Stone. Now I have had them before, when I was pregnant with Jenna. Worst pain ever. Last night the really uncomfortable dull ache started in my right flank. I drank a ton of water. It got to about 6 out of 10 on the pain scale and then I must have fallen asleep. Feels better today but I am not convinced that I don't have one. That is the last thing I need to deal with. At least I see the doctor on Wednesday so I can ask him what he thinks.

Other than the health issues we have been dealing with we were also dealing with getting our truck smogged so we can get it registered. Now this is the first year we had to get smogged. It is a diesel and the broke state of California is going for money any way they can so they are making diesels get smogged. I will admit that it is not the same test as regular vehicles and it doesn't have to be done at a test only facility. That doesn't mean though that you are not in for some trouble. If you have any after market stuff on your diesel truck you better start putting it back to stock. At least that is my basic understanding. We bought our truck used and it had a chip on it when we bought it. We took the chip off a while ago. I guess even though the chip was supposed to be untraceable it still can leave something messed up on the computer part. Anyways, Ryan took it to a great lady who was not only knowledgeable but really reasonably priced. That is the good news. The bad news is the truck didn't pass. She hardly got the test going and had to stop due to it failing already. My husband had to take it to the dealership to get they system "flashed". I guess that is basically a reset of the computer system on the truck. The dealership couldn't do it right away so Ryan had to leave the truck for half of the day. The flash cost about $100 and didn't guarantee that the truck would pass smog once it was done. Well in the end all things worked out and my husband got the truck back and smogged that day. It is just those few hours of added stress I can do with out. Needless to say God has really come through and provided everything we need and then some. We are not free and clear with all of the things we need to pay for and take care of but for the immediate needs of the dog, the truck and being able to celebrate Christmas God made sure we had it covered one way or another. I couldn't be more thankful.

I hope you all had a very Merry Christmas and are looking forward to 2011. Thank you stopping by to check in. If I don't hear anything significant from disability I will certainly post something after the doctor on Wednesday. The countdown begins to starting the IV meds...Oh I forget to mention I had to stop the Levaquin due to the pain. I just felt that some of it definitely was more tendon than joint and the doctor said if I was in doubt to stop it. So I did and have felt somewhat better. I hope that was the right the decision.

Tuesday, December 21, 2010

More Like Hell Than a Herx

Extreme words I know but let me tell you that is exactly what last night was. I fell asleep on the couch really early. I didn't get a nap mainly due to dealing with the dog and the vet. I am realizing though that being home with the kids isn't going to really allow me a nap. That is a kind of a problem. I am just going to have to try and get them both to lay down and watch a movie while I lay on the couch. I had daycare available but couldn't afford to spend the extra money. So back to last night. I started to not feel good and fell asleep on the couch. I don't know how long I was asleep but I woke up in severe pain. I think it was mostly joint pain but some of it was muscle or tendon. Both of my shoulder/rotator cuffs hurt really bad. My elbows, wrists, almost all of my fingers, palms of my hands, ankles, toes all hurt too. My knees would feel like someone was stabbing a knife in them. The pain isn't constant but almost throbs or comes on really strong then goes away and maybe 30 seconds later comes back and then goes away again. By far the worst pain I have been in. Shorter than the day I did that detox relief bath but probably more intense. (Just a warning that what I am about to say may be TMI for some of you. I don't think I have mentioned it before) For girls, our symptoms can be the worst when around that time of the month. I know that the bacteria typically reproduces every 4 weeks or so and the medication can only kill the bacteria during certain times in it's life cycle. So I am not sure if the bacteria cycle gets on board with our cycle or what. I just know about that time, I usually feel worse. Anyways, last night was awful. I do take comfort in the fact that I believe the new medicine is doing some good although I don't feel any better yet. My only concern with the amount of pain I was in was weather or not I was having a reaction the Levaquin (the severe tendinitis that can cause tendons to rupture). I don't think I will have a way of knowing for sure. I just have to take my chances that it was really a herx and the bugs are dying. Unfortunately I don't feel much better today, I have been hurting since I woke up but not with the severity of last night. Too top it off the kids still don't feel good. I have decided to take my 7 yr old in to the doctor for her stomach ache. She will curl up in a ball and says her stomach hurt and then later she will say it is feeling better. She hasn't been herself though and even decided she didn't want to go look at Christmas lights last night. That is definitely not like her. The other problem is she doesn't want to eat. She is a string bean as it is (about 46 pounds) so she can't stand to lose anymore weight. She woke up with a very slight fever this morning so I am just not sure what it up. We will see what the doctor has to say.

On a totally different note, and a good one at that, I found out my friend got the full time fire inspector job at my Fire Department. I am certainly not taking credit for her getting the job but I truly believe this was all part of God's plan. With the economy problems that we have all been facing over the last few years a lot of City's and other government agencies have been forced to let people go. (I realize you all probably know that already) So my friend was one of the Fire Inspectors that got let go from another city. She managed a little part time work with another city when she got let go but things weren't looking good for any of the Fire Inspectors in the are that got let go. Even if you weren't letting people go, you weren't hiring. Well when I knew I was going to be off of work for a while, my boss asked if I knew of anyone that could help out part time while I was gone. I said I certainly did and we were able to bring my friend on. It was horrible timing though and my coworker who worked part time had some health problems that led him to not be able to work anymore. He was already retired and just back on contract to help out. That really left Fire Prevention in a bind. That along with some new state regulations taking affect in 2011 were making for quite a work load that one part time person wouldn't be able to handle. With things being crazy even when I do come back we were able to get approval for another full time position. I just found out my friend got it. I knew she could do it. What a Christmas present for her. I am so excited and really feel like a good thing has come from this awful disease. God used something bad in my life to do something good for someone else. That makes it all worth it. :)

Well if things keep going the way they are, I may be blogging everyday. I am debating about calling disability for an update. It has been a week since I talked to them. Part of me is not expecting anything new and part of me is just praying that they have a decision. I am just not sure that they would all and tell me the answer. The first rep didn't. This claim rep has been better but I am not confident she would call and say okay I have decided, you are denied. What to do...Does me calling mean that I am not being patient and that I am trying to make things happen in my time? I don't know the answer to that. I am not sure if I will call or not. Okay, knowing me I will call. Pray for a positive outcome with disability and the strength for me to handle this pain, but most of all pray the God's will be done whatever it is.

Monday, December 20, 2010

God Just Keeps Showing Up

Okay, I get it now. God is bigger than my illness, bigger than my anger and frustration, bigger than money troubles, bigger than, well anything. I have been honest about my feelings, questions, worry, doubt the whole time during this journey. Just when I would begin to lose hope God would show up. I admit that alot of where He has shown Himself has to do with finances. In all honesty though that has been one of my biggest issues and fears. That's just the way life is. This life is difficult to navigate when you are struggling in the financial department. Time and time again as we have tried to deal with the storm of this illness we have been hit hard financially and time and time again the phone rings, the mail comes, a text message comes through and someone is throwing us a life preserver. This time the mail came and some long time friends, more like extended family, from across the country stepped in to help out. We haven't even talked on the phone during all of this, and yet being the amazing, loving people they are they pulled together as a family and blessed us during this Christmas season. Your thank you card is coming but in case you read this before it gets their...THANK YOU from the bottom of our hearts. We love you guys even though we are so far away from each other.

So I can't promise that I will never slip back and let the evil one convince me things are hopeless for a little while. I know though that I am praising God for all of His blessings and asking Him to always be right there to turn me back around. I don't need to know what the future holds. I just need to remember it is in God's hands and His plans are far better than anything I could imagine.

Thank you God for showing us that You have never left us alone in this and You never will. You have used ordinary people as amazing blessings in our life. We are so thankful for You and for them. Continue to use this struggle for Your good and never let us lose hope. Help us to stop telling You how big our problems are and to start telling our problems how BIG You are.

Sunday, December 19, 2010

I'm Afraid I Know the Answer

The last few days have been a little rough. We had a Christmas party Friday, Saturday and today. I didn't get a nap Friday or Saturday. I tried but couldn't fall asleep. By last night I was beat. I was worried I was going to be miserable last night because I felt pretty bad in the afternoon but I felt much better by the time we left. Unfortuneately my girls were both under the weather this morning so we had to cancel going tonight. It may be for the best since I have been in quite a bit of pain today. I did get about a 3 hour nap though which was much needed.

As the year is coming to a close I have so much going through my mind. I feel like I have a lot of this things from 2010 that I still need to deal with yet I am so ready for a new year. I know we can have a fresh start anytime but I always appreciate the start of a new year. It just feels "official" to me. A lot of what I feel I have left to deal with has to do with finances or lack there of. Besides catching up on some bills, one of top priorities I have when things turn around with the money is to get both of the girls tested for Lyme.

I am afraid I already know the answer when it comes to my 7 yr old...I believe I gave her Lyme Disease. The last few weeks she has started in with some tummy trouble. We have been down this road before and I was so glad when I thought we were done with it. She has complained of a stomach ache for almost 2 weeks straight. She says she feels like she is going to throw up and never does. How she describes her pain and where it is, is almost identical to the stomach problems I had that started so long ago. Of course now the assumption is that mine is/was probably Lyme related. She has also been having dizzy spells. She only had one or two before her annual checkup. However at her checkup her pediatrician found an irregular heart beat. The rhythm stip they did looked normal be we need to followup with the cardiologist. She has continued to complain of being dizzy on occasion. You have heard my cardiac history and my complaints of being dizzy. Then tonight the clincher came. She started breaking out in hives or a rash. Again. She suffered from this when she was younger like 2/3/4. She would break out in these rashes for no apparent reason. We would take her to urgent care or her doctor. Of course, half of the time the rash was close to being gone by the time a doctor saw here. She was given some allergy test due to her stomach troubles and told she had some mild allergies to stuff but we could never corolate the rash to having or being exposed to something she was allergic to. The rashes have varied in appearance and have shown up all over her trunk or sometime her face. That is where is started tonight. We can give her some benadryl which helps a little but the rash or hives can come and go for days. We have always been told they don't know what it is or that it is most likely viral. At his point I am begining to believe it is most likely Lyme. Part of me gets really upset when I think about it. I don't want her to suffer at all. No parent wants that for their kid. I don't want her to be scared because she has seen what this stupid disease has done to me. At the same time though, I would have an answer. God help us if we have to go through what I have gone through to try an find an answer. At least I have become much more of an advocate for my own health and the health of my family. I will not accept an answer I am not comfortable with. I feel blessed though that I have a great team of doctors to start with regarding the Lyme. If Lyme is not the cause, I also love our pediatrician and know she will do whatever it takes to get an answer. It is very comforting when you hear specialists tell you that they take your referral very seriously becuase the doctor who referred your child doesn't do so unless she is concerned. If she is concerned the they are concerned and are going to go the extra mile just to make sure everything is okay. So I am confident we will get the right answer. This is just a road I wasn't expecting to have to go down. Take the Lyme out of the equation and I stilll wasn't expecting for my child to have problems. I don't think any parent does. Sorry to say it is just the world we live in. I am thankful my 4 yr old doesn't have any of those issues. The only thing we really have with her are almost bipolar mood swings. I am praying that is more of a phase. A very long phase to say the least. So hopefully I will have an answer her shortly. If and when things turn around.

Trusting God to get us through and get us an answer to the disability issue soon. I was thinking about it (like I ever stop) and am wondering if me getting an answer to disability after the first of the year is part of God's plan. Maybe we need to wait so if they approve it or I guess even if they don't our taxes this year will be way different for the better. I may never know the reason things are taking so long and i know what I need to stop trying to figure everything out all of the time. I'm just saying it crossed my mind.

Well, it is late and I have to get up early to take my Maggie in to get her broken tooth pulled. I still have a lot of things I want to write about but I am tired and I hurt so I guess it is off to bed for me until another day. It is funny how much blogging can help to try and clear my mind. If no one ever read this it would be okay just because I feel like I was able to get rid of some of the stuff weighing me down or going through my brain. I wish I had a talent for writing so this would be more interesting to read. My thoughts just seem to come out in a random rambling fashion just like they are in my brain. One of the Lyme blogs I follow, is such a good read. This poor family is going through hell on earth but the way the mom writes it is like reading a story. Even when things are bad she has a way of making me laugh or cry and I feel like she is just amazing women to be around. She seems like so much fun even in all of her pain. My way of writing is what it is though. I won't throw this away or be hard on myself like I was reading my childhood diary. This is just the way I am...take or leave it.

Friday, December 17, 2010

Back Up and Running

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.

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 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.

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.

Monday, November 22, 2010


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 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 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! :)

Thursday, October 28, 2010

Tougher than I thought

I am having a little bit of a struggle right now with just accepting my current situation and knowing where to go from here. I am not trying to complain. I know we will get through it with God's help. I guess I am just surprised at how much I am struggling being away from work and just knowing where to go next. I have such an overwhelming concern about other people and how my situation is affecting them. I don't like thinking that I am causing any hardship to the Fire Department. I am not saying I am all that great but I do know that me having to leave when I did caused some extra strain at work. I also don't like having to constantly be "bothering" (as I see it) other people about things related to me and this disease. I know that this is one of the reasons we have an HR Department but it gets to me when I am constantly having to ask questions, ask for help, ask them to review something...Now I am at a point where I am running out of protections. Within the next few days work won't be required to do anything for me and technically, if I am too much of a burden they can let me go. I am blessed to work for a great employer and great management and I don't think I will get the axe unexpectedly. I am the type of person though that begins to have guilt because I feel like I am becoming a real burden on them. I want to do what is best for them.

I also had a little relapse of anger and frusteration over this whole issue with disability and all. As I said last time, my dad went to the doctor with me. I have definitely got to see a different side of him. He has expressed more about his feelings during these last few months than I think he ever has. So while we were waiting to see the doctor we were talking about the whole treatment and money and all. My dad says he knows I am worrying about money and that he wants me to not worry and just know that no matter what it takes we will get me better. I know my parents would do anything for me but again I had to bring up the fact that they shouldn't have to go to extreme lengths to help out. I work full time, have health insurance and disability insurance. Yet a large part and the most exspensive part of my treatment won't be covered by my health insurance and I am having a hard time getting disability. I am extremely thankful for the coverage I have had. I am not trying to make it sound like this is as bad as other people have it. it just comes down to the fact that I or my employer are paying for both types of insurance and yet I am not reaping the benefits. What does they are being paid go for. Why should we pay them. I could save that money in the bank and have it to pay for treatment and cover my bills now. It is just very upsetting that even some one who supposedly has the protections out there for situations like this can't really get them. I then feel guilty for taking up people's time, resurces, and money when I feel they could best be used on someone else! End of sermon. I am just really drained over this whole thing right now. As Turko would say, "It Ain't Right!".

Tuesday, October 26, 2010

From Junk Food Junkie to Health Nut

I think we all know how important diet is when it comes to our health. When things are going good it can be easy to over look. Some people are blessed to not have a sweet tooth. I have a friend like that. She can have a whole jar of Reese's on her desk and not have the desire to eat one. I am not blessed in that way. I don't have "a" sweet tooth. I think I have sweet teeth. I wouldn't eat just one, I would eat the whole jar. I love sweets. If I were to be completely honest, there have been plenty of times in my life where I could say I didn't have more than one fruit or vegetable for an entire week. That is really sad, I know. So why I decided to bring up the diet thing to the doctor again, I don't know. I knew I wouldn't like the answer. What would be the one or two most important things I can do diet wise right now? NO SUGAR! Seriously? It's not drink a gallon of water, it's not eat garlic, it's no sugar! Sugar is toxic and my body doesn't need any more toxins than it already has. I get it. I know it's important. I just know it is hard for me. You are asking a junk food junkie to go to health nut. No sugar, no processed food. The doc says to go back to the foods God gave us to eat...Well that would be no problem if God would just make carrots taste like chocolate. The doctor did say chocolate is okay. Basically if it comes in a box or out of a window, I shouldn't eat. At the donut shop they don't come in a box or out a window so they must be okay right? The doctor told me about a book he wants me to read about diet. Guess I should take his advice. I just have to find the little things I can change to get me closer to a good diet. What can I eat in place of a chocolate chip cookie that still tastes good? I'll let you know when I find out!
Now on to whats new with me and what the doctor had to say. I don't have a whole lot going on in the way of new symptoms. I have noticed a few issues with my vision so I definitely have to go to the eye doctor. These things can be Lyme related or from one of the antibiotics I am taking. I certainly don't want to mess with my vision. I had a few days of being extra tired and a days of some intense bone/joint pain. Nothing significantly different though. I have had some tightness in my chest and been short of breath more recently. I am hoping that doesn't get any worse. Heart and breathing issues scare me the most.
I saw the doctor this morning. My dad went with me. I have seen a totally different side of my dad then I ever had. I love my dad. He has always been a very hard working great guy. I have just seen him become so passionate over this Lyme thing. He has been saying, what ever it takes, we will do it. He is certainly not messing around. I was glad he came with me. He has always worked so hard and so much that it has been hard for him to be involved so I am enjoying the fact that I have him involved in something so important. So back to the doctor's appointment. Nothing has changed with my medication. We are going to stick with the same medications I am currently on. My doctor would like to get a total of 3 months of Mepron on board before we do the IV. Here is the game plan. Do about 2 more months on current program. Next visit we need to do a complete panel of tests to review the condition of my gut. (I'm trying to put it nicely) As I already knew, my gut can be in sever distress with all of the medication I am on. Unfortunately, my insurance doesn't cover the tests. It will be between 200 and 250. It needs to be done though. Then we will be able to give me some other things to get my gut in good shape for the IV.
After discussing the difference between the port in my chest and the PICC line in my arm, it sounds like the port is the best way to go. The way it was explained is basically there is some procedure to insert the port in my chest. Once a week we will access the port with a special needle (God help me, I hate needles) and leave it in for four days. I will take 2 grams of Rocephin twice a day for 4 days and then have 3 days off. I or we will have to mix it up, put it in a bag, and it will go into the port over 20 to 30 minutes two times a day. He didn't say how often the port itself needs to be changed or replaced. He said that will go on for about 6 to 8months. Hopefully that will take care of most of it.
I gave the doctor a copy of the insurance companies "Clinical Policy Bulletin" on Lyme and what they need to have before they will cover any IV. If we are blessed we can get 8 weeks covered. I will take what ever I can for sure. The good news is the doctor thought the price he quoted of about $250 a week included the medication. That was a huge relief because a few other Lyme patients have quoted this medication at about $25 to $35 per dose.That would add about $200 a week. So I guess I know how things are going to proceed for at lest a little bit. Perfect timing right? Two months from now puts us at about Christmas Day. What a Christmas present.
My appeal for disability should be in today. Now it's just a waiting game. If I could just get this approved I can really focus on getting better and can lay out the budget to try and pay for treatment. Once again, I have to remember to trust God on this. In this trial His glory can be made known. I know I have a lot more to say but my mind is going blank and I'm getting really tired. So I guess that's all for now. Thanks for checking in and keeping with my story. Don't hesitate to leave me a comment. I always like to read what you have to say. Until next time...

Tuesday, October 12, 2010

Just Roll With It

"Just roll with it!" That's what my husband said to me on the ride home after seeing this new doctor. He knows me all to well. He could tell my brain was in a tail spin and that I was trying to sort everything out and plan ahead and, and, and...He reminded me that I had been given a lot of information today and that I just needed to take some time and absorb it. I need to take each day as it comes, regardless of what it holds, and just roll with it. I am thankful that he is there to calm me down when I need it.
So I have to start by saying that Newhall, CA is a long ways away. I can't really complain because my two main doctors are here in San Diego and I may never need to go back to this doctor. Too many Lymies don't have doctors in their area and have to travel far away, sometimes to other states just to be seen. So I am blessed in that regard. But with the out of control LA traffic it took us just over 3 hours to get there this morning. I was 30 minutes late to my appointment but they saw me anyways. It was a stressful start to my morning.
I guess I need to back up and make sure I revisit why I had to go see this doctor. It primarily comes down to the fact that when I was denied my disability, one of their issues was the fact that my Lyme diagnosis did not come from an infectious disease doctor. I did confirm with disability that there was nothing in writing, no law or policy that stated that my diagnosis must come from an infectious disease doctor. They just said that that is typically who would diagnosis this disease. I think I stated in my last blog or two that my doctor was fairly offended by that comment. He is licensed doctor in the State of California yet his diagnosis along my LLND is being ruled as wrong. The insurance companies one doctors opinion trumps my two doctors opinion. Nice! I knew though that I would have to play the game.
I asked my doc for a recommendation to an Infectious Disease Doc and he sent me to a very nice lady in Newhall, CA. I told the doctor that I was basically seeking another opinion on my Lyme Diagnosis. She reviewed my medical history, asked lots of questions, and did a really thorough physical exam. I am not going to lie, I was scared she was going to say she disagreed. I prayed about it but I was scared. I didn't think I could handle it if she said she didn't think I had Lyme. She basically finishes up with her questions, taking notes, and reviewing everything. What she told me next was great news on one hand yet scary and overwhelming on another. She definitely believes that I have Lyme. We didn't discuss how long she thinks I've had it. I guess at this point it doesn't really matter. Then she proceeded to voice her concern over the fact that she believes I have Lyme Carditis. All that basically means is that the Lyme has attacked my heart. Once I was diagnosed, I always felt that my recent heart troubles were caused by Lyme. I think my two other docs agree but neither of them had gone so far as to name it specifically. I almost cried when she told me she believed that this was the cause of my "inappropriate sinus tach". Another big confirmation that I am not crazy. She was also a little surprised that with all of my heart issues the past few years, the cardiologists never sought the cause. They just gave it a name and threw some medication at it. Sadly, this is so common practice in the medial community today. To find a doctor to actually treat you, the whole person, and to find out why things have started going wrong and correct it is rare. Your symptoms are given a name, even if it is a disease of some sort, and you are commonly given medication to make the symptoms go away. How often is the cause of the symptoms treated and if it is, how often are you given the tools, information, and support to make the changes necessary to try and prevent it from happening again. I am beyond blessed to have now found three of those doctors.
Back to the doctors appointment. She said because of her concern over the involvement of my heart IV meds are necessary. However, if were not prepared to try and pay for long term treatment (she knows most insurance won't pay or will only pay for a month)then she said don't bother. 4 weeks was not going to cut it. My husband spoke up and asked how long she thought I would need an IV. Get ready...minimum 6 months, possibly 8 months or longer. Then back to oral meds. Holy Cats! (as my grandpa used to say) She is writing up her findings and recommendations for treatment and sending them to my doctor. Hopefully, this will be a huge hit to the disability people when the get my appeal.
I thanked to doctor a few times and left the office in tears. Good news, yet scary news. The Lyme Carditis thing is a little freaky because it can certainly cause tachycardia but it can also cause heart disease. Essentially, some Lymies have had heart attacks, sudden cardiac arrest, or other things that have led to the discovery of a heart that is very weak and failing. Upon further inspection though, they don't have any of the obvious causes of heart disease. Some require pace makers, others have required heart transplants. Again, I know God's got this worked out and I just need to roll with it but I do have to be realistic. I will admit, if I haven't before that this is one of the things I have worried about with my herxes. You can experience a worse form of symptoms you already have. If you have been blessed with a healthy heart, it is hard to explain what it feels like when out of the blue you get chest pain, can't breath, and your heart feels like it is doing back flips and it's beating at 200 beats a minute. It is one of the scariest things I have ever felt. In my mind, that can't get worse. I am going to chose to not let my mind go there though. I could totally work myself up over the what ifs of that situation.
We made it back home safe and sound, for witch I am thankful. (As a side note, on the way up, we did get see the crazy band that shut down the 101 freeway to perform a concert on the top of their van before the cops showed up. Not cool to tie up that much traffic but definitely a site)Get home and to my surprise, my medical records that I should have gotten a week or more ago showed up. I am glad that they came as quickly as they did after I was told they had no idea when they would show up. I would have loved to have had them at my appointment but things worked out anyways. The interesting thing about my medical records was that there were doctors notes that I thought were of significance that the doctors never mentioned to me. One note was from one of my cardiologists. They were looking at putting me on beta blockers for my fast heart rate. However, the note said there was some concern as to weather I really had asthma and if so they would put me on a calcium channel blocker instead. Feel free to mention that to me, and to follow up and confirm the diagnosis of asthma. I was on Advair and a rescue inhaler although I wasn't convinced it was asthma. But why didn't they follow up on that? The second note was from the neurologist. I saw him after my first crazy episode of my arm muscles being in excruciating pain for no reason and me losing all the strength in my arms and having similar episodes continue. He did a MRI of my head to make sure I didn't have MS or anything else. He told me in the office though that he was sure the MRI would be negative and it was all anxiety. His notes stated although my symptoms were consistent with anxiety, due to the number of points on my body that were sore and tender he believed I had fibromyalgia. Hello, thanks for telling me. So now I have 3 doctors that agree I have Lyme, and two that say I have fibromyalgia, yet disability says it's all crap. Okay!
One last rant before I end with some advice. The cover letter that came with my medical records from disability stated that they were responding to my Long Term Disability claim and giving me a copy of the City's LTD policy. First, I didn't apply for LTD, I applied for STD. To my knowledge, I get STD first and then it transitions into LTD. Second, I never requested a copy of the policy. Third, they didn't even put a copy of the policy in there. This is not the first time something like this has happened. Am I wrong to be concerned with the fact that the little things get screwed up and yet they are deciding my financial future? Very scary.
So to end, here is my advice. Believe I am still learning and need to remember to follow my own advice but here it goes! Please, please, please take charge of your health. I don't just mean trying to make healthy choices, but following your gut. Seek second opinions for diagnosis, treatment, procedures. Research and learn as much as you can. Educate yourself. If your doctor dismisses your feelings and concerns go someplace else. The doctors may have the education, training and experience to treat people and their ailments that you and I don't have. But they do not know your body as well as you do. They are human and they will make mistakes. Lastly, we live in a fallen world, and as sad as it is to say, money talks. Some people will put your well being aside for the love of money. Fight for what you know is right. It took me a long time to get where I am today and I know I have a long way to go. But not giving up and not giving may have just saved my life!

Wednesday, October 6, 2010

Putting It All on the Line

I decided to take a risk today and put myself and this disease out there for everybody to see. For someone who has always been self conscious, especially of how they look, this is a pretty big deal. I am learning a lot through this trial in my life. I want good things to come from this. I am very limited in what I can do right now but if I didn't do anything then I think I would give up the fight.
I have shared through out my blog some of the effects that Lyme can have on you and some of the symptoms I suffer from. I decided today to video one of my "twitching" episodes and post it so people could see first hand what this disease can do to you. A lot of the pain and discomfort of Lyme is not visible. This is one of the few things that would give someone an indication that something is wrong. The episode I posted was fairly mild compared to some of the other episodes I've had. When I say twitching, I know a lot of people think it is the same as muscle spasms. It's not, but I do have those too. As of right now, the twitching doesn't really hurt. It does take a lot out of me though. It can come on any time, any where and with little or no warning. I may go a week without any twitching and then I might have episodes a couple of days in a row. I think my longest episode has lasted close to an hour. It usually seems to come on when my muscles feel weak. I normally get the feeling in my calves or my forearms. It can be a weak feeling or a creepy crawly feeling (which is the worst). Soon after I begin to feel that way the twitching usually starts. Sometimes it is brought on when I get cold. It is a nerve related thing so I have had luck stopping it by taking a hot epsom salt bath or taking extra magnesium pills.
As I said, getting cold can sometimes start me twitching. Temperature control is something I sturggle with. For a long time I had cold hands and extremely cold feet. I get cold easily. It got to the point that the only way I could warm up was to take a hot bath and I mean super hot. Sometimes it feels like I can't make the shower or bath hot enough. I have found out recently that I have a low body temperature. Almost always when my temperautre is taken it is 97.6. I found out that I can be running a low grade fever at 98.6 or 99 then. Makes sense I guess. I haven't gotten into the habit of taking my temperature twice a day, although I should. The issue with getting cold has turned painful more recently. It can be hard to stay warm in colder weather. Things like holding something cold in my hand can become very painful. The freezer or dairy section of the grocery store can be torture. My finger tips can hurt really bad and become numb.
I know I have talked about the fatigue and being tired. Before I was diagnosed and took off from work there were days when it took everything I had to not fall asleep at work. It took all my strength to just walk. I knew that just wasn't right. Now at least when I am that tired I can sleep. Lymies are supposed to a minimum of a 1 hr. nap before they get tired in the afternoon. Most days I am sleeping 2 to 3 hours and some days I am sleeping 5 or 6. I think the fatigue gets aggravating. If you are having a good day otherwise it is hard to remember how sick you are and it can be easy to over do it.
It is hard to say what I think has been the most painful part of this disease. The joint and bone pain definitely has made me think about everyone who has arthritis. Some days it is really bad. It is usually in my wrists, fingers, and toes. The bone pain can be anywhere but is usually in my forearms. It feels like someone has placed my arms in a vice and just keeps tightening it. The nerve pain can be is different and something I have had much longer than the joint pain. A few years ago I started getting a burning sensation down my one shoulder blade. Then it went to the other. Then I started getting a deep stabbing chest pain on the left side of my chest. Sometmes the pain would pierce me all the way through to my shoulder blade. It always worried me because it was on the left side of my chest and I started having heart trouble. I'm glad now that I know what it is from. The nerve pain can be like pins and needles sometimes or just this wierd feeling like my skin is crawling. When that skin crawling thing happens you can't touch me. The slighest touch becomes the most horrible thing in the world.
The muscle aches can get bad too. When the muscles ache and feel weak, whick happens mostly in my arms, I just want to cut my arms off. I remember coming home from work a few times and just crying and asking my husband to just chop my arms off at the shoulders.
I know I have covered a lot before about how this disease makes me feel. So sorry if I have bored you by repeating myself. I am no where near being done with all of the other things this disease has done to me but I think I've said enough for tonight.
So look at my video if you want. You can also type in lyme or herxing on You Tube and see all sorts of similiar videos about this disease. That is where I got the idea from. It brings a new perspective to what people are really going through. can laugh. My kids do. I am not going to say it doesn't hurt my feelings some days when my kids laugh at me but I know it is their way of dealing. A lot of times my twitching ivolves me giving an involuntary thumbs up. One time it made me repeatedly put my fist in the air. My husband just stared at me and I just said Rock On. We laughed. My husband laughs too. He is always so laid back about eveything but he finally admitted the twitching freaks him out and he wants me to go take my pills or get in the bath to make it stop. So I know his laughing is because he is nervous about it. When it is really bad it can take my breath away and I can't really talk. I struggle to get words out so I don't usually talk. Well I guess I got side tracked as usual. So good night for now and thanks for checking in on me.

Tuesday, October 5, 2010

Flaws in the System

I want to start by saying that today was another amazing day due to some angels in my life. I received an unexpected financial contribution that will ease the burden for a few weeks. That will hopefully allow me enough time to get things squared away at work. Then I will have some time to fully focus on my disability appeal. It is very hard to focus on getting better when you have financial issues to deal with. God has certainly used these past few weeks to show me whats really important. I really wan't sure that life could go on without Starbucks but somehow it has. I'm just kidding, kind of. I mean when things were looking very bad, all of sudden every little cent became crucial. We've stopped most of our eating out which is good for our financial and physical health. I have also stopped most of my trips to starbucks which has the same benefits as not eating out. We have just really reevaluated where our money has been going. It is a new way of living, but really we are not in NEED of anything. I guess we have never really been in need. We have always been in WANT! Tough to learn but I appreciate the lesson. God has really begun to work some miracles in this difficult time and as I said I have been truly blessed. I know it will be crazy when this whole thing is over and done with and I can look back and what we went through and how God pulled us through. Until then I will continue to wait in anticipation of what He is going to do next. It's times like this I am so thankful for my faith. I think I would have thrown in the towel a while ago if I didn't have hope that only comes from God. All of this was really important for me to say although it doesn't really fall under my title of Flaws in the System. Thats where I am going next.
In the midst of all my "happy" tears and joy today, I was still battling a lot of frusteration. I am truly thankful and blessed that I have some people who have stepped up to help me and my family in our time of need. The fact of the matter is though that I work for and contribute to systems that are supposed to take care of me in my time of need. Why should my employer pay into an insurance company to provide disability insurance for it's employees in times of need when they can deny it or at least put you through a mild form of hell to get what they are being paid to give you? I have done okay with health insurance so far but I already know some of what they do and don't cover. So again why should my employer or anybody pay for health insurance when they can turn around and end up dictating your care. As much as I am grateful for the help I have received I am almost angry that a family with two full time working parents with benefits and everything should have to be in this position. I feel undeserving on some levels and on others I just feel like there are other people that this help could go towards. What about the single mom working a couple of jobs at minimum wage who can't afford health insurance? or the family at my kids school who stepped up to the plate and took in 3 or 4 neices and nephews after their parents were killed in a car crash? I guess I am just really begining to see how messed up things have gotten in this world. On the flip side you have some people that don't seem to work for anything, are constantly in trouble with the law, drugs, etc...and they seem to live fine off of food stamps and other benefits. (Please don't take that the wrong way. Some people are in a truly difficult circumstance and need welfare and some of those other benefits but there are plenty who get it and shouldn't)
The other thing that got me fired up was talking to disability again today. They offered to send me a copy of all of the medical records they received so I could go over them and see if anything was missing. That only seemed fair as I was going to appeal their denial of my claim. I was told it would take them until probably the end of the week to get them copied and send them out. That would have been September 24th. I had not received the records so I called The Standard to get an idea of when they were mailed out. Oh, well they were some absences or something in the copy department so they are extremely backed up. I don't know when your records will be done and mailed out. I reminded the claim rep that I did have a deadline for filing my appeal. She said, well you have six months. I replied something about technically six months to file but financially I didn't have a month from the start of this thing. So anyways...just another piece of the puzzle.
I was given some words of encouragement about not giving up the fight on this claim. I won't. It will be hard but I am not going to let them win.