Tuesday, June 22, 2010

I Don't Want to be a Chicken

I'm going to keep this short since keep saying I need to go to bed early and every night I'm up way later than intended. So my herxes have definitely increased with the full dose of doxy. It didn't happen right away like I thought but the past 3 or 4days with the exception of today have been a little rough. The joint pain has not been as much but a lot more nerve pain, mostly burning or pins and needles, and the twitching. I am trying to have a sense of humor about it all. I have never been good at laughing at myself but I figure now is a great time to learn. Laughing is good for you and I want to take the edge off for everyone. So my husband and I have been trying to come up with a nickname for me. I told him I could be his spirocutie which just made us both laugh. He said because "Twitch" is already taken (by a pro motocross guy with terrets) maybe he could call me "Jerk". Ha, ha, ha, honey very funny is all I have to say to that. So my twitching or jerking has been bad which can be upsetting to everyone. Freaks my husband and the kids out sometimes. So the other day my twitching was causing me to make my right arm punch up sometimes a few times right in a row so I just looked at my husband and said "Rock On!". We laughed. A common twitch with lyme is called the lyme shrug which is kind of like shrugging your shoulders. Here I was doing the lyme shrug and my leg kept coming up so my 7 yr old says "Mom quit walking like a chicken". She proceeded to immitate every twitch I had for the next few minutes which just made us both laugh and laugh. It felt good. In all honesty though I don't want to be a chicken...:). So we'll see. I started my second antibiotic tonight-tinidazole. Unfortuneately this doesn't mean I get to stop the doxy. Two meds killing the bugs can definitely bring on the herxing. Praying it is tolerable. I also started on naltrexone, which in low doses, is supposed to boost my immune system. That is a good thing but it can also mean bad herxing. When my immune system kicks in and starts killing bugs on top of the meds it can really kick your butt. At least I know the bugs are dying. I guess I need to bring this to a close since I meant to go to bed early. Now I'll just be in bed on time. Who knows when I'll fall asleep.

Sunday, June 13, 2010

Green with Guilt

Green with guilt. Thats how I feel right now. Not green with envy but green with guilt. Since green is the color for lyme, everything seems to take on a green tint from my perspective. I am still working through trying not to make everything in my life revolve around this stupid illness but right now it does. It is very hard to not have a conversation where lyme comes up. "How are you feeling?" someone asks, I start jerking or twitching, I have to take a bath to help ease my pain, I can't have a coffee now because I just took my meds, I have to eat now so I can take my meds...on and on it seems to go. Believe though, I am trying to not talk about it so much, to not complain, to not share to much info. I try and remember when most people ask how I am feeling or doing they are just being nice and don't want a full update on all my latest aches and pains.
Now to where the guilt comes in. I am much more of a giver than a taker. I think part of it is just being a woman. We like to nurture people and take care of them. Part of it is just me. Now I am not by any means a great housekeeper or cook or anything like that. At the same time though things that I may normally attempt to do, enjoy doing, or feel are my reponsibility I have a hard time when anybody else does them. That includes my husband and it doesn't usually matter why they are doing them. With that being said, it has just caused me tremondous guilt to have to be down and out and rely on my husbad so much for things I normally do. I don't like not functioning at my full capacity and when I just can't and he has to or my mom or dad has to help it is beyond frusterating. The worst part is, this is only the begining. I can still get up and tend to some if not all of my normal day. If I end up being down for a significant period of time Lord knows how difficult that is going to be.
I must admit my husband has been just awesome. He has been so helpful and forces me to rest or eat even when I don't want to. He has been my rock when I have completely freaked out because I am so scared or so sick...the one funny thing is though the twitches scare him. Just the other day I was showing him a video of a poor girl going through a horriffic herx and he starts saying how I shouldn't watch that stuff it's just going to make me worry or whatever. What happens the next day, I start twitching pretty bad and he says you are freaking me out, I can't stand it when you do that. I just started laughing. I have tolerated my twitching okay but he can't handle it. Anyways...that part gets hard. I mean having your loved ones have a difficult time with your symptoms. I know my mom hates the twitching but the worst is my girls. My husband was gone earlier today and the twitches came and my 7 yr old goes "Mommy stop that!". She grabs my arms and tries to hold them down. I have to reassure her that even though it looks a little scary mommies okay. That breaks my heart. I am still dreading having them tested. Talk about guilt. If my girls got this from me I am going to have a very hard time with that. I realize it's not my fault. I realize I didn't know I had this when I was pregnant but anything negative that happens to your kids because of you is hard to deal with.
I do have to say I am so thankful to God I was never able to donate blood. I have a serious issue with needles and always have. I knew how important it was to donate blood but it took a long time for me to agree to do it. The 3 times I have attempted something has always happend that stopped me from being successful. I realize now that was probably God's way of keeping me from unknowingly infecting anyone else. Definitely a positive thing in this mess.
We'll see what the guture holds...

Friday, June 4, 2010

Losing My Identity

I feel like so much has gone on in the last few days it is hard to know where to begin. So the doxycyline has been kicking my butt to say the least. Yesterday was probably my worst day so far. The good news is yesterday is gone and today was much better. Tomorrow is yet to come. I tried increasing the doxy on Wednesday so I can get up to my full dose. I think that is why yesterday was so bad. So I went back down today and will try again tomorrow. I have got to find a good combination of food to take so I don't get "sick" with this medicine. I learned the first morning I had to eat something. That worked fine until yesterday when I didn't eat enough. The bummer is I can't take dairy or probiotics within 2 hrs of the medicine. So trying to eat enough to not get sick that doesn't include dairy especially at breakfast is hard for me. Add to it the thyroid med I take. I can't take that with food. I am pushing it to take it and only wait 1/2 hr to eat. Trying to schedule food and meds around each other is a little crazy. Now add another handful of pills I got...very hard.
Here's how yesterday played out. Wake up and get to go to my new primary care doc. He was recommended to my by my llnd. My llnd requires all her patients to have a pc doc. She only specializes in a few things so I totally get why she wants that. I have been going in circles the last year or so as I was trying to find out what is going on with me. I have switched pcd's a couple times. After the last guy basically told me the lyme disease was non-sense, even with the positive blood test in his hand, I was beyond angry. So I go see the new doc and could not have asked for anyone better. Back to yesterday...I was late leaving for my appt. This doc is in Pacific Beach and I had to be there early for paperwork. Crazy morning as usual by my husband was taking the kids to school. I am in the car and naseau hits me like food poisoning. Now I'm crying, trying not to throw up while I'm driving and make it to PB in 30 minutes. My husband ends up taking me to the doc, we arrive just in time for my appt. When I called to tell them I was late they said no problem, come in and we'll still get to you. Sweet office staff on the phone, sweet and helpful in person at the office. We both go into to meet the doc. He just looks friendly. "So what brings you in?" I try to keep my story short and sweet (ya right) and give him copies of blood work, etc. He basically agrees 100%. He shares his thoughts on how things may go. By the way he has already seen a few other lymies before me. He also believes in the importance of other therapies and things to help me through this. The one thing I didn't want to hear was he is expecting to at some point have to go the IV route with my meds. He just said when someone has been sick for so long it is hard to get away with just oral meds but we will see. Either way I left feeling so blessed for a doc that cares about getting his patients better and not just covering up symptoms.
With all of this going on, new meds, new doc, trying to do insurance for work, and figure so much out it has been on mind that I don't want lyme to be my only identity. I struggle with this disease and everything it is doing to me, my life, my family and how it is always on my mind and trying to let it be the only thing about me. I don't want to push family, friends and co-workers away because they only thing they hear from me is about this disease and how crappy I feel. How do other people do it? The women just diagnosed with breast cancer, or dealing with a child who has a disablility, or the man who just lost his job after 20 years...how do you keep those things from becoming who you are? I know it is something I need to pray about. I need to keep a positive attitude, and keep focused on the things I love and make sure I have good friends to keep me in check when I have crossed the line.
I go back to something I shared when I first started this blog and I just shared with a fellow lymie tonight on her blog...this is where we can come and vent and let it all out. We need to or we will go crazy. We also need to remember people reading out blog come here voluntarily. They can close us out whenever they have had enough. So if the whining and complaining get to much sometimes we are sorry. To save our sanity, our marraiges, our kids...this is what we need.
I appreciate the love and support of family, friends, my docs, and fellow lymies I have never even met, as I am just begining what I can only guess will be the most difficult fight of my life. The only thing I can imagine being harder than this right now is finding out that either of my girls have it. I am chosing to trust my God and Savior to bring me through the tough times. I can't even begin to think about the strong woman I will be once I have passed through this fire. That is the hope I am holding onto.
For now I may just choose to believe that I am not losing my identity...I just have yet to find it!