Monday, May 30, 2011

I'm Nuclear

So I am still hear. 3 weeks down at a work and I am still alive. In some ways it feels barely alive but alive none the less. I have some good and some what interesting news from the doctors office. I got my heavy metal test back and the doctor was fairly happy with the results. I am only slightly high in 3 things. That is the good news. The interesting news has to do with the 3 things I am high in. One is aluminum. I guess the most common source of that is cookware. Deodorant is also a source. I didn't think we had aluminum  cookware but I could be wrong. Guess I need to look into that. The other metals are really weird. I am high in uranium and something called gadolinium. Both of those are used in different nuclear applications. Could someone please tell me where I am getting exposure to anything nuclear? I am surprised I am not glowing in the dark. Hopefully the doctor can shed some more insight on that subject.

I have got to say that my symptoms have been really noticeable still. I have definitely had an increase in fatigue. I slept about 4 hours during the day about a week ago and I was in bed by 5:30 a couple of days this past week after work. I have been having a lot of headaches and sore throats. The pain, well there is not much to say except it is bad. I have had very few days in the past 3 weeks with no pain. I at least have it at night if I haven't had it earlier in the day. Some days it has been bad muscle aches, in my arms again which have been gone for quite a while. a lot of it is the bone and joint pain everywhere. This morning in just two fingers I am getting waves of joint pain that takes my breath away it is so intense. I've had some burning nerve pain again and the left side of my face starts going numb. It is so hard to figure out why the increase in some of this stuff again. I am still thinking it is from the new medication I am on. I guess the good news is I would take all of this to mean it is working and getting rid of some more lyme or co-infections. The frustrating part is of course how long will last or how much more do I have? The doctor said when I felt consistently good we would do the IV for two more months. Although I have made some improvements I don't consider this consistently better. In some ways it is hard to come up with a definition for that. I guess this is where good tracking of my symptoms comes in to play. Then I can hopefully look back and see a difference on paper.

I am also going to try and work harder at doing things that may help me feel better. I know you probably think...Well duh! Why wouldn't you be doing everything you can to feel better. As I have said before, this disease can become like a full time job. Dealing with the symptoms, getting enough rest, and taking all of your meds and supplements can take up all of your time. My husband just asked me the other day if I am doing everything I can to get better? I would like to think I am but I guess if I am totally honest about it I am not. I am going to make an even greater effort to do the things that may help me get better or at least feel better. That means drinking plenty of good water, eating lots of greens, doing my protein shakes, cutting the junk, working out at least twice a week, rebounding, dry brushing, and Epsom salt baths (on days I am not using my port), plenty of rest, buying my portable FIR sauna and using it on the days my port is not accessed, thinking positive, taking all my meds and supplements everyday no matter what...I think that covers almost all of it. Well I guess I am going to try and do all of that I better get off the computer! Have a great Memorial Day weekend. Thank you to everyone in the military, past and present, some of which have risked or given their life that we might be free. God Bless the USA!

Monday, May 16, 2011

Going Backwards

What a first "week" back to work. I say "week" because I am only working three days but that is all I can handle right now. Actually, I am not even sure I can handle that. I guess it is not fair to judge how I am doing off of only 4 days but it was a lot tougher than I thought. First off, my Lyme cycle seems to have shown up early and has decided to stay late. I thought I was going to escape my first few days with no real problems. Wrong! The joint and bone pain that started back in over a week ago has managed to stick around. That is so frustrating. I was so excited to think that the Vitamin C was going to help eliminate it. Maybe it's the cyst buster I  started taking causing a herx. Who knows for sure but I was just excited to think it was gone. I was definitely more tired than I thought I was going to be. When I get off I am ready to skip dinner and go straight to bed. Problem is it's only 3:30. I was just tired and in pain. I have also had a sore throat off and on. This morning I woke up with the sore throat and a headache. By noon I was feeling horrible. I just wanted to be in bed. I took some Advil and went to take a nap in my car. How sad it that? I have to go into the parking garage and take a nap in my car at lunch. I did make it through my day but I honestly didn't expect to be awake right now. The headache is gone for the most part but my back hurts, the bone pain is starting in, my muscles hurt...on and on the list goes. Other than having a major heart freak out today, so far I have had almost every symptom I have ever had. My face started to go numb for a few seconds, I had occasional burning nerve pain, ringing in the ears, burning sore eyes, brain fog, a twitch now and then. It was just a rough day. Unfortunately it wears me down mentally and emotionally. I am expecting the rest of this week to be rough. Maybe some of this has to do with my chelation for heavy metals as well. Regardless of the reason I get a two week break from my Tindamax (cyst buster) and hopefully my Lyme cycle will be done hear in the next few days so next week I can get an idea of how I do when I am feeling somewhat decent. It has just been a rough start. I have labs I have to do that I keep forgetting to do this week and I am hoping to hear a little something from the doctor on Thursday.
One good thing has been that my coworkers make me laugh. I have missed the joking around and it feels good to laugh a lot. On the flip side, just as I thought, things are changing at work. Roles, responsibilities, projects- a lot of it has yet to be revealed but I know for a fact things are changing. I also know that I was only approved to work this schedule for 60 days, calendar days. So basically by July 7th I am either going back to work full time, asking for more time to work a modified schedule, or well lets not go there. Right now it is really just going to be a lot of prayer and taking it one day at a time.
I don't want to go to bankrupt. I don't want to keep asking for money or help. I would like to move my family back into our own house. I can't sacrifice my health though, for any of that. The money or credit score or even having our own house again isn't going to mean anything if I am truly unable to function because my health has gone down the toilet because I was trying to do to much when I wasn't ready. This is a really tough position for me to be in. I could really use your prayers right now. Although I could always use prayers for healing or symptom relief and for finances, what I really need are prayers for guidance, direction, discernment. I need to know what God wants me to do. I need the right doors to open and the other doors to close so I can just know I am following God, not myself, my husband, the world.  I am trying to keep a positive attitude. I am not sharing all of my negative thoughts on Facebook and am putting on a happy face as much as possible. This is my one place to just let it out. Thanks for keeping up on this crazy journey of mine. You have all been amazing. I am blessed by your kind words, your prayers, and your support with my treatment.  Be back soon I'm sure.

Sunday, May 8, 2011

Just Have to Say It

I just had to make one last short post about my big day tomorrow. I'm going back to work-part time that is. I am freaking out to say the least. Nervous and excited for a lot of different reasons. A lot has gone on since I left and it will be interesting to see how much my position has changed it's focus or areas of responsibility. I have a new full time co-worker. She was part time for a few weeks before I left and is a friend of mine so I am looking forward to having a female partner in crime but I will miss my other co-worker dearly. No one could ever replace him. I am excited to see everyone and to help contribute to my mounting medical bills. I am nervous though about how I will physically and mentally be able to handle everything. Unfortunately, although I have had some good days the past week my bone and joint pain has come back. I should have one more week before my Lyme week so I'm not sure what is up. Now I know I can herx or have symptoms at anytime but I was just so excited that it was gone with that first round of IV C. Needed a nap today too but I attribute that to the busy weekend we have had. Yesterday was a crazy long day for me so I can't complain.  Anyways, it is certainly my goal to try and get to bed early since I am sure I will have problems falling asleep. So I guess I will keep you updated later in the week as to how things are going. I will want to let you know how work is going and how my heavy metal chelation goes. Please pray lots. Wish I was having a pain free day to set me up for tomorrow. But I guess I would rather have the pain today if it means maybe I won't have it tomorrow. Now off to finish getting ready for the week. Groceries, meds lined out, lunches taken care of, symptom notebook, uniforms. Oh please, please let me have at least one uniform that fits. When I was taking my ADD meds, it made me not hungry and the weight feel off. I actually got back down to high school weight which I never thought I would see again. Problem with that med was as soon as I stopped taking it, even a day, my hunger came back with a vengeance. Now I have been maintaining. I can't complain because a lot of Lymies lose weight like crazy and get too thin. However I am maintaining at one of my heavier weights. So I am so hoping I have a nice fitting uniform for my first day back. I don't want to have to hold my breath the whole day. :)

Wednesday, May 4, 2011

Crazy Good

I promised an update on my crazy good doctors appointment yesterday. Sorry it took me so long to get to. Things have been busy and I was just to tired last night. I must apologize, as usual I did not go back and ready my most recent posts, so if any of this is a repeat, I'm sorry.

Last week, when I went to the doctor,  I didn't get a chance to see him. When I go to the office once a week it is to access the port and do my first IV. A lot of times the doctor stops in and we chat but I hadn't seen him in a few weeks. I did have that phone call with him about my lab work so I was hoping to talk with him but I didn't get the chance. We did a big bag of IV vitamins at that appointment and I was sent home with IV Vitamin C to do once a day after my antibiotics. The doctor wanted to try this because of the amount of pain I was having. To my surprise, the intense joint and bone pain I was having went away. I haven't had it in a week. Yay. So yesterday I got to see the doctor for a regular appointment and the decision was at to continue with Vitamin C. I am hoping the pain continues to stay gone, of course. We briefly reviewed my labs again which were all good except for that Vitamin D level. I know it is common especially in women with Lyme to have low Vitamin D but I have already been supplementing. He didn't feel there was a specific reason I wasn't absorbing it, he just said to take a third pill a day. That is 15,000 IU of Vitamin D. He said it is really important we get it up so I am hoping this third pill works.  My CD-57, if I didn't mention last time, is 61 or 63. Over 60 is good for a Lymie. Here's to hoping it continues to rise back up to a normal range which is about 200.

As we continued our discussion about my progress, we decided I needed to go back on Tinadazole (Tindamax). In Lyme it is used as a cyst buster. Spirochetes like to ball up into cysts and you can't kill them  until you bust the cyst. So twice a day for 2 weeks, then two weeks off. It is really sad that I was on this earlier in my treatment and I don't remember how it affected me or why I stopped taking it. Who knows with my Lyme brain, maybe I just didn't refill it one time. Sad but true. I don't have a clue. I have to go back through my blog and my notes to see if I can find the answer. Then the really exciting stuff came. I can stop my Doxycycline. So awesome because I hate that drug with a passion. I also get to stop my Plaquenil. Two antibiotics gone! If I continue to feel good, we will get to a point where I can take a medication break for about 6 weeks. Then I will go back on for 6 weeks, then off again and on again. Doctor feels in 6 more months I will really feeling great. I'm a happy girl.

The next thing he brought up is way cool also. He decided to screen me for heavy metal toxicity. Now I have obviously been making improvements so that is a good sign. Heavy metals can interfere with treatment. Sometimes, when people don't get better or stop making progress, it is due to heavy metals. I have been wanting to do this for a while so I am excited. Just another thing to cross of the list. WARNING...TMI coming. For the screening, I have to collect 8 consecutive hours of urine and bring it in to my appointment. Then instead of my IV abx, they are going to give me a chelation treatment. (That helps get rid of the metals) Then following the treatment, 8 more consecutive hours of collection. They then analyze the difference and we go from there. So excited to get the results. My only concern, is the symptoms, detoxing heavy metals can cause. My Lyme cycle should be in about 1 1/2 to 2 weeks and I don't want to have anything else to contend with because I WILL BE BACK AT WORK.

Doctors release and approval for modified duty is done. Now I am just waiting for the final schedule approval from the City. My proposal is M,T,W from 8:30 to 3:30 so start. We will see how I do and go from there. A complete release to full time unrestricted duty probably won't happen until my port is out. I have been so nervous about this as I have shared but this past day, or two, or three I have been feeling fairly good besides being tired. So now I can say I am excited, still nervous, but excited.

The one bad thing I have to share is what my 7 year old daughter told me when I said I was going back to work. She started to cry and basically said- Mommy, even though I have missed the money (she knows things are tight) I don't want you to go back. I will miss spending time with you. I don't want to go back to daycare. Now if that didn't completely break my heart and make me cry. I guess I haven't thought of this time I have had off as worth much to my kids. I have been sick and just felt they were missing out on me so much. Who knew, even the sick mommy was better that the always working mommy. My goal is to not work forever. My kids need me. For right now though, it is what I have to do. God's in control and He knows what He's doing.

With that, I guess I'm done for now. I couldn't ask for a better week leading up to me going back to work. Busy softball playoff schedule for Jenna this week. Closing ceremonies and team pool party on Saturday and Mothers Day Sunday (even though Ryan has to work on Sunday). You know me by now to realize I probably forget something or will have more to say the closer I get to going back to work. Thanks again for the support. Don't forget May is Lyme Disease awareness month. Do something...Educate yourself, support my treatment financially, watch the amazing documentary Under Our Skin on Netflix.

Monday, May 2, 2011

It's Been A Year

April 28 marked a year since I was officially diagnosed with Lyme Disease. May is Lyme Disease Awareness Month. I remember thinking, what timing, when I got diagnosed last year. I can't even begin to figure out where the last year of my life has gone. In some ways it has flown by. Yet in other ways, it has dragged on and on. Things have certainly changed. The direction of my life is different. The things that matter the most to me are different. My perspective is different. Surprisingly I am still on a little bit of an emotional roller coaster about this whole thing. Some days, it just hits me, and I have hard time excepting the fact that I am sick. Right now it looks like I will have this disease for the rest of my life. There is no cure. That does not mean that I am going to expect to feel sick for the rest of my life. I am certainly not going to settle for locking myself up in the house and giving up. I can fight. I will fight. It is hard for me to say, I will fight to feel great AGAIN because I don't know if I have ever felt great. I can say though that I will fight to feel great, maybe for the first time in my life. Now that is exciting. That gives me hope. There has to be better than this. I've get things to do. My job is not done here.

This next week is bound to be a little stressful as I prepare to go back to work. I have all of the paperwork I have to get figured out with HR and my doctor. I'm praying it goes smoothly this week so next Monday, May 9, I can put that Fire Department uniform back on and head back to the job that I have given 10 years of my life too. I will have about a week at work until my Lyme Cycle hits. It will certainly put me to the test right away. We will see how I handle things. At least I will know and I can adjust accordingly. I think I am finally okay with what ever God has planned for me. If it's His will that I do fine at work and can jump back in full time and help provide for my family, great. If it's His will that I can't work at my job anymore, then I will be okay with that. He has provided for our family up until know. I don't doubt He will continue to do so. I just have to trust. The numbers don't add up, the bank account is falling behind at a rapid rate, the medical bills are increasing...but He has a plan.

I still struggle with identity and how Lyme Disease affects it. I am not Lyme. I can't let this disease be what defines me. There is also no denying it. It's reality does not go away. I don't believe that one day will go by when I don't think about this disease. I don't day to day or even moment to moment when some part of this disease will rear its ugly head. Even if I get to the point where my symptoms are gone, I will feel the need to spread awareness and help support the cause. It is a part of my life.

I need to say I have been extra burdened the past few days over two Lyme related deaths this past week. There are a lot of Lyme related suicides and I believe that was the first death. That just breaks my heart, but I understand. I have been there. I know how dark things can get. I have been blessed to have been pulled from the dark pit of despair when I didn't think I could feel any worse then I did at that moment. Those were the times when I was literally screaming for God to rescue me because I was so afraid I may do something horrible. When you have to fight for a diagnosis, fight for treatment, find a way to pay for it all, and pray you don't lose your friends and your family over this, after you have probably lost your job and been told you were crazy and you aren't feeling better for months or years on can get to a very bad place. The other big cause of death related to Lyme from what I have heard is heart related. If you have ever had heart issues you know how scary they can be. I definitely have some heart problems. I know now they are related to Lyme. It absolutely scares me though. People with Lyme don't usually get diagnosed and then die in the next week or two. You can read about people who have been fighting this disease for years before it takes their life. The second girl that dies this past week- 29 years old, waiting to confirm it was heart related, dies right after treatment. It gets your attention for sure. I'm doing my best to not worry about it but it is in the back of mind that I can be in treatment for years and this disease may still win.

I am asking as always that you keep me and my family in your prayers. Pray for my healing, pray my girls don't have it, pray we can get the finances we need to not cause ourselves or my parents to go bankrupt over this, pray for better testing and diagnosis. Just pray. I am also asking, in light of Lyme Disease awareness month- educate your self. This disease is found in all 50 states and multiple other countries. It knows no boundaries, everyone is at risk. This disease can be fatal. This disease has symptoms that mimic up to 350 other diseases or problems. This disease is commonly missed diagnosed. Next- support us. Tie a green ribbon on your car or a tree in your award. Spread the word. Offer financial support if you are able. Thanks for reading and keeping up on my journey. I pray that I am the only person you ever know that has had to engage in this battle.

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