Sunday, April 22, 2012
This last week the lyme community lost 3 people. One of which was suicide. There are so many of us that consider suicide at some point or another on our journey with chronic pain and chronic illness. Sometimes people don't have friends or family that care, or want to help and support them. Sometimes the toxic die off and drugs over power your brain and you can't think straight and just want to die. Sometimes you become so depressed you see no other way you can go on. Sometimes the beginning of treatment is too much to take, or you have been on treatment SO long that you just can't handle the struggle anymore. Some of us loose our house, our animals, file for bankruptcy, have to live off of or with family, go on food stamps, have to use the food shelf. You just want a normal life again. I could come up with a million reasons. Fighting through all of the horrible effects can be very difficult to say the least. I think a lot of us have been at one of these points or all of them. It's hard to live in daily pain or feel sick so often. This is why we need to stick together, reach out, talk about it, speak up. One of the main reasons for my blog is to educate people and get support out there. There is a large lyme community out there. Many groups and people on facebook, many support groups to go to, many web sites to read up on, many doctors that can help you(you just need to know where to look). I am fortunate that I have a few close friends that will never give up on me or turn their back on me. I also have a very supportive family that also fall into that same category. But even with all the support in the world, you can't be helped if you don't reach out. I have experienced almost every one of those listed above. I have considered suicide, I have made a plan, I have known what I want to say in my letters to my daughter and husband (and written them)and I have spend time in the hospital because of it. Checked myself in. I have never admitted this to anyone outside my very close group. So why now? Because people need to understand that this is a very common thing in the lyme community. These thoughts and actions are something that are discussed on a common occurence in closed groups. I want people to be aware it happens. I want the newly diagnosed Lymies out there to know that it's ok to feel like that, but you need to reach out if you are going to make it. We can't keep loosing our friends to suicide. Although I totally understand where they are coming from and just wanting to be done, we need to stick together! We need each other! We can't let the bugs, the political crap, the unsupporting people, all of the uneducated medical people that said nothing was wrong with us to win! We can make it, and we will! Reaching out to someone is the first step!
Saturday, April 21, 2012
I recently when on a higher dose of two drugs which were causing too many side effects so I had to take a mini drug vacation. I was still herxing a lot and on day 5 of being off drugs I started having a lot of chest pain and other random stuff. Dizzy, random pain, pukey, numbness, blurry vision, head pain, etc. Really nothing out of the ordinary but was scary because of the chest pain and the location of the numbness. I wasn't sure if I should go get checked out or not. I remembered that my out of state doc has an on call doc at all times so called at 10:30pm. I actually talked to my doc and he reassured me that it was just herxing and thought the chest pain was my muscles contracting. And for whatever reason I was still herxing like crazy even after being off my meds for a while. I felt better after talking to him and went to bed. The next morning I woke up feeling great and then started to feel sick again. It was gradually getting worse and the chest pain was getting unbearable. I has numbness in my left arm, the left side of my face, and the left side of my neck. The pain was also traveling to my shoulders and my back hurt where my heart is located. I couldn't take it anymore and took myself to the ER along with my 5 yr old. They did an EKG, lab work, Xray and I was hooked up to monitors for about 6 hours. My poor kid was such a trooper! I was glad to be hooked up to monitors since I was having such bad heart pain. Everything came back normal,thankfully! The ER doc wants me to do a stress test at the clinic next week just to make sure everything is ok. I hate going in when you don't know if it's herxing or something really happening, you feel like a nerd! But I figure when it comes to your heart, you better make sure! Currently I am back on drugs and slowly building back up again. Hoping I can get back to a normal level and not herx like crazy!!!
Sunday, April 15, 2012
I haven't been THIS tired in a long time. Friday I took a 5 hour nap, last night I got 11 hours of sleep and then I took a 4 hour nap today. That's a lot of sleep!!!! My body must be working hard right now! Hoping for a good week!!
Saturday, April 14, 2012
For those of you that missed the episode on Dr. Phil. This is huge that a popular show on daytime TV did a show on Lyme!!!! The more knowledge we can get out there the better! I thought they did a great job, only wish they did a longer show!
Thursday, April 12, 2012
Only with a weird, crazy disease like Lyme can you have one day where you feel so sick and feel like you are slowly dying and wish you would just die in your sleep. And the next day you feel amazing and can get a ton done. And then the next- herxing so badly you feel horrible. It's a crazy ride. I hope tomorrow is the better day again. Today has been really hard, I feel terrible, So tired, weak, sick like I have the flu, and really, really toxic which tends to effect my brain functioning. Which for me= a massive amount of depression that is hard to handle. The brain part of it is the hardest part to handle a lot of times. Lets hope some detoxing helps so tomorrow is a more clear day. I just need the reminder that things can always be worse than they currently feel, you need to struggle to make progress!
Wednesday, April 4, 2012
I haven't been blogging much these days. I am now back on a normal amount of treatments and a schedule. I am on a higher dose of drugs which is making me sooooo tired, I guess my body is working extra hard killing things off. I am also on injections every other week which I am happy about. Give me a little break in between getting them. Hopefully I can slowly get off of them completely and be able to function with just my oral meds. Nothing too exciting going on here. Just unpacking still and getting ready to see my out of town doc. I fly out in a month!!! I am excited to see what has to say and show him how I have been doing!! One thing I do need to push myself on and work on is detoxing. I have been bad and can tell, need to get that yucky die off out of my body!! Time to dig out my sauna again and get back into sweating my butt off!!