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.
Showing posts with label chelation. Show all posts
Showing posts with label chelation. Show all posts
Monday, May 16, 2011
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.
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.
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