For some reason my paragraphs aren’t seperating…I tried repeatedly to get them to seperate because I know it can be hard for lyme patients to read long paragraphs, but I can’t fix it. And by all means @lymeaid-if you can fix the paragraph breaks I would appreciate it!!!
So literally I have been in pain for over 1210 days STRAIGHT, no relief, no times of no pain. Something has always hurt at one point or another, back, legs, head, chest, feet, arms, joints, stomach, you name it, it has hurt including my skin- only Lyme patients will get that and maybe those misdiagnosed with some other conditions… Not complaining- explaining.
It’s hard to stay positive and upbeat when you’re in pain every day of your life. It really is, it’s a daily struggle. I do what I can to keep myself sane. I blog when I can, I have my FB pages (Brittany Lyme Aware), my Twitter page (@GarzaB2701) and I go to school online- which has been harder and harder since my crash in Dec. I have my favorite shows and DVR them in the middle of the night. I have my kindle that was a Christmas present to read when I’m not reading texts. And thanks to one amazing person I have an awesome new phone to play with and discover new things every day.
I try to do what I can, when I can. For instance, each day I try to do something around the house. I usually only try to do one thing at a time, one day I’ll vacuum, another laundry, another kitchen, etc. I try to keep up with the housework and homework because hubby is working his butt of to support us because I can’t help right now.
I think about how much I took for granted before I got sick and how much healthy people take for granted everyday of their lives.
3. Going to the bathroom
4. Sitting up
5. Trying to talk normally without stumbling, stuttering, or losing my words
6. Going to the store without serious planning and pain afterwards
7. Driving at all, but especially long distances
8. Just basically living life without pain everyday
I can’t wait for the day I’m in remission (if this is still only Lyme and friends) and I don’t have pain. I would give a lot to have a day with NO PAIN. I know once I’m better (and I will get better, I have to believe that) I will NEVER take anything for granted again. I will dance in the rain and run in the sand and water at the beach!
The point is I want healthy people to be happy with what they have, their health. They may be going through other difficult times but they should be grateful for their health!!! Something I will never ever take for granted again for myself. And I thank God everyday for the health of my kids and hubby (although I think he has Lyme but his immune system is so strong).
Despite the pain and every other symptom I’m also terrified right now. I’m STILL not herxing. Those who are not familiar with lyme- herxing is when your symptoms get worse or new symptoms appear due to the die off of the bugs in your body. I’ve upped my abx (antibiotics) at an extremely fast rate, quicker than ever before. I always herx almost immediately when I start an abx, any abx, and still nothing. Today I’m adding in a second pill twice a day. Normally I would add an extra one in the morning every other day for a week, then everyday for a week or so then a second one at night every other day…so on and so forth… But nope, I’m adding 2 extra pills a day, morning and night, today, tomorrow, the next day, to see if I will herx.
If I don’t…then I’m adding in a different abx. This other abx literally knocks me off my feet the second I take it, so if I don’t herx from that then I will be even more worried than I am now that something else snuck in my body while Lyme and friends were killing my immune system. That would be the point of my doc wanting the Chest CT scan. Doc is worried that either something is there that shouldn’t be or something that’s supposed to be there isn’t right.
I can’t afford it though. Lyme is so expensive- especially when you don’t have insurance. So I have a gofundme site (http://www.gofundme.com/198f0o) that I made a while ago but didn’t share for a long time because I hate asking for help. Although it hasn’t been successful, and really that’s fine, because nobody owes me anything…they don’t know me. It’s not their problem, it’s mine. Eventually I will find a way to pay for it. I’m going to contact needymeds and see if they work with any of the radiology places around me, although I doubt it because of the area I live in, but it’s worth a shot. I’m also going to call around and see if any of the radiology places will take payments, long shot, but still worth it.
Anyway, that’s my life right now, still crashing, or crashed I guess since it’s not getting worse, just stagnant. I wish I had more positive news, and more positive update, like the abx were working, or at the very I was herxing, but it is what it is…
I keep writing anytime I can, anywhere I can to help spread awareness about Lyme. I even go on MS, ALS, RA, Fibro, etc, support group pages and provide them evidence of the misdiagnosis that happen concerning those conditions and Lyme. If I can help one person with a death sentence get a new lease on life I’m happy. The more I help, the better I feel inside.
It’s all I can do right now. I’m a fixer, a helper, and right now helping other patients find docs, support groups, or a diagnosis is all I can do…so I’ll keep doing that for now, until I can do more. I pray for all of you suffering from Lyme or ANY chronic illness.
It’s a tough, hard road. And it’s a road that you have to try to stay positive while going down or you will get depressed or go crazy. I’m fighting feelings of worthlessness, pain, laziness (even though I can’t help it, unless I want more pain), feeling not good enough for my family, like I’m not holding up my part of the deal. It’s hard. I have to stay positive to keep those feelings away. We all do.
I haven’t been blogging as much but my blog has a ton of information on it…links to different information about Lyme, treating it, helpful groups, and sites. I also have tabs about abx, detoxing, my whole story, symptoms of Lyme and co-infections. I’ve been told it’s helped a lot of people and I’m grateful for that, I hope it continues to help people. So here’s hoping to a small miracle to get this CT scan and making sure we are still only dealing with Lyme and Co-s. You can find my blog at https://littlebithaslyme.wordpress.com/