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.