Drugs, No Drugs, Drugs, No Drugs

Just a little update. My poor body has been a mess. I was doing great so my lyme doc wanted to take me off all drugs for a month in order to do the Borrelia Culture through Advanced Labs. It's a newer test and a lot of docs are super excited about it because it's much, much more sensitive than any other culture out there. I felt great the first 4 days off treatment and then went down hill very fast. Psychologically I was a complete mess, I was so tired, and a million other things. So after I couldn't take it any longer I called my doc back and explained. He had me go back on a much higher dose of one of my meds to try and jump start me back to feeling good. Not good. I-FELT-HORRIBLE. I needed to puke but wouldn't allow myself because I needed to keep the drugs in, which resulted in dry heaving. Needless to say I was HERXING like crazy, my body was not happy with me for cutting all drugs cold turkey and then going back on, but only one drug, and a higher dose than normal. I decided to change my schedule up and take them all at bedtime in hopes I would just herx when I was sleeping. It didn't really seem to help much. Finally two days ago I couldn't take it any longer and made the decision to go down to one pill instead of two. Yesterday I felt so much better and so far today I feel pretty good! Thank god! My doc wanted me to call after I was back on for 10 days and then we plan on trying to go off drugs again to do the lab in one month, oh joy, can you feel my excitement?! Not sure If want to deal with the off and on drug battle again. He is going to call my back and we will go from there. I am just going to enjoy feeling good again and see what the next step is we take.

Feeling Sorry For Myself But Hopeful At The Same Time

There is a lot going on in my life right now. Our house is listed right now as a short sale and there is no way around filing for bankruptcy. We were planning on moving this summer into my husbands Grandmothers house even if our house hadn't sold to make it easier to transition our 5yr old into kindergarten across town. Even with all of this we are still struggling with finances from all of my treatments and appointments. We have decided to move now and to save even more money on what we are paying on our current house. So here we are, packing the house up and moving loads over to grandma's house. It's incredibly frustrating to be loosing everything we have worked so hard to get and have to live with family. It's very odd to go back to not owning a house and not knowing what you are allowed to do. Can I paint? Can you use the detergent we use so I don't get sick from the perfume one you use and break out in hives? Can we mouse proof the cupboards? Is the bathroom usable? Can you prove we are living here so my kid can get into the school we want her in? So many things. Don't feel like an adult right now much less a mother or wife that can provide for her family.

BUT I have to be thankful, I have to look at the positives or the guilt, depression, anxiety will eat me alive. I am ALIVE, I am getting better, I am doing this to heal, I am thankful we have family that will take us in so we aren't out on the street, I am thankful for my friends and family that keep cheering us on, and am thankful for all of the people that remind me of the positive things. It's hard to see it when you feel like you are buried in all of this and you can't breathe. I need to look for the sunshine in all of this and keep fighting, it's too easy to give up and almost everyone in my life would tell you I do NOT take the easy way out and I DON'T like to give up. So here I am, fighting, fighting for many things in my life--and I don't plan to stop. Just remind me of the sunshine on the dark days!

Good Lyme Disease update

Are My Eye's Open?

I have been fighting a lot of fatigue this week. I think it's herxing and coming across and being SO tired, worn out, drained, can't keep my eyes open...you get the point. My poor husband has had to take care of morning routine with my daughter for quiet some time now. I don't hear my alarm AT ALL! I just stopped setting it so my hubby wouldn't have to get up and walk across the room to turn it off. Before I got sick things were totally flip flopped. I was always the one that heard the kiddo and had to pry him out of bed. I guess it's his turn now ;-)

These are they times I wish my daughter still took a nap. Sometimes I put her in her room for quiet time but it normally doesn't last too long. Sometimes I just can't fight it and take a nap while she is playing in her room. I have no idea if she took a nap, but I got a nice one in! I don't feel comfortable doing that most of the time though, I would like to keep my house standing!!

Overall I am still doing pretty good, especially if I look back to when I started treatment. That felt like the end of the world! Literally felt like I was dying. Now it's smaller things that get on my nerves because I have been on treatment so long and I get annoyed I am not done yet. Overall I have had much more energy since I started my Bicillin injections. Even though my husband may think otherwise, I think my memory is slowly improving. I can keep up with my daughter more and can have more of a structured day again with her.

Some things I would like to see improvements on. Since I stopped Mepron my bone and joint pain is back. It feels like deep bone pain and normally pain meds don't touch the pain. I am also battling night sweats, which is really getting old. Both very clear evidence that Babesia is still hanging on and we need to kick it's butt!! Not sure what's in store for me but have been trying to figure this out with both my in town doc and out of state doc. Hoping to start something soon for this. I am getting nervous, I see my out of state doc early May and he said a while back that he thinks I will make big strides by the time I see him. I am not where I would like to be and it's only 3 months away ahhhh!!! I am sure I will be on treatment for a while yet but I am glad that I am seeing improvements and able to function. We will see what the new meds will bring!!

The Rich Man's Disease

I have heard it 100 times before. Lyme Disease is a rich man's disease, and it is true! I am so frustrated and angry with the politics of lyme. Why is it so hard for the medical field and insurance companies to except??

Well for one, it's a huge liability for doctors because there are so many treatments, long term treatments, various drugs, insurance companies coming at them left and right, uneducated cruel, hurtful people deliberately trying to shut them down , etc, etc.

Why won't insurance companies recognize it? Easy, because all of the other disease out there that could be lyme-MS, Chronic fatigue syndrome, psychological disorders, arthritis, heart problems, liver problems, chronic pain, Alzheimer...I could go on and on, the list is long-would then be the insurance company's problem and they would have to cover these expensive long term treatments that would cost millions of dollars to treat. Instead they basically say if you need more than 2 weeks of treatment then you really don't have lyme and they will not cover you.

It should not be like this! I should not have gotten to the point that I had to quit my job, we should not be loosing our house, I should not have to uproot my daughter from the only things she has known, we shouldn't have to move in with family at our age. I SHOULD NOT HAVE TO THINK ABOUT STOPPING TREATMENT!!!!! We are broke, and many people have helped us. We are to the point where I may have to cut down my treatments a lot or stop all together. We just can't pay for all of this anymore. I SHOULD NOT BE UP AT 1AM BECAUSE I CANT STOP THINKING ABOUT THIS. I WANT TO GET BETTER!!!! I want to run more than the 20 feet with my kid with out being so out of breath and feel sick. I want to have the option to have another child if I want, I want to be able to sleep all night and actually wake up refreshed, I want to be able to enjoy a party, holiday, get together with out panicking about the cost of whatever is going on. I am making great progress and my doc thinks I will see great results by this next summer. I AM SCARED. I don't want to down slide. I remember those days clearly and never want to have to call 911 again because I thought I was dying and have to take an ambulance ride to the ER. I don't want to go back. SO I SAY SCREW YOU TO THE POLITICS OF LYME DISEASE AND TO THE SELFISH UNEDUCATED JERKS THAT MAKE THIS SO HARD. YOU ARE TAKING INNOCENT LIVES AND IT IS NOT OK! WHO DO YOU SEE WHEN YOU LOOK IN THE MIRROR?

Thumbs Up!

Everyone has been asking me how I have been so thought I would post an update.

I am on 3 powerful drugs right now and started treating Bart! The first week I felt like I had morning sickness most days and then it would tend to clear up a bit after lunch. I was also soooo tired and drained. I felt like a bus ran me over and then a truck came by and did it again. This week has been so much better. Yesterday I felt good ALL DAY LONG!! Awesome!! I am getting rashes and itchy at night and had to stop a drug that was supposed to help with mood/rage and help me sleep. It did the opposite and kept me up at nigh but did a great job with the mood part of things. I can't tell if I am allergic to a new food or if the new drug is giving me rashes. Called doc and he said its a side effect of the new drug. So benadryl will be my best friend. I am also going to try and take a half a dose in the AM and the other half a dose in the PM of the pill that is supposed to control the lovely Bart rage and insomnia. Hope it helps. I know the hubby is glad I don't get rage anymore. It's a scary thing when it pops up out of no where. So, overall I am doing awesome and so happy to be feeling myself more lately! I hope it continues!!

What's Going On?

Am I herxing, relapsing, really toxic, needing to change drugs?? I have no idea but I think I am toxic. Things have been rough for a while now especially this week. Yesterday I was puking my guts out, weak, numbness in arms, legs and lower lip, semi high blood pressure for me, twitching and the list goes on. Today I was scared to take my drugs because of how yesterday went. I finally forced myself to take my 1st dose around 4pm, waaaay too late but at least I got it in. An hour and a half later I went down hill. I was at Target with my daughter because I felt fine when we left the house. Not long after we were there I started to feel my body go against me. Very light headed, dizzy, felt like my blood pressure was tanking, really weak, left arm was mostly numb, foggy, couldn't focus, hard to walk, then when I got home the twitching started and my neck was having a hard time holding my head up, weak and twitching. I am starting to feel a little bit better, good enough to type now. A couple of my friends think the way I am detoxing right now maybe isn't working anymore so I am overloaded with toxins. I am looking into different ways to get the toxins out of me and was going to go get clay tonight but then this hit! So tomorrow it is!

I am feeling pretty lost in this fight. It's been 15 months now, why am I not better? Why do symptoms come back? Why is it so up and down? Why, why, why. It's such a struggle to stay on track with taking meds 5 times a day, getting enough sleep, eating the proper meal and certain foods with certain meds and an empty stomach with other meds, remembering to detox, trying to stay active to keep the toxins moving out of your body, trying to work a full time; very demanding job, being a mother, being a wife, being a friend, keeping up with doctor appointments, chiro appointments, acupuncture appointments, and soon to be massage appointments, keeping a medical journal, keeping up to date on anything lyme related. It is exhausting just living!

I am planning a trip out east to see a pretty high up Lyme doc that my doc knows. I will be going in the next couple months in hopes that he can help me heal a bit easier. We shall see what the future hold for me, I am thankful there are docs that really know their stuff and are willing to treat so many of us!

Out and About

Isn't this what you keep in your purse when you go to the mall?! 5 liquids and drops, a handful of pills, dissolving tablets for under your tongue, table spoon for measuring, purchase water, ask for extra cup so you can put liquids in with the correct amount of water. When ever I have to go somewhere and I know it's going to take a while or I know it will be around when I will have to take my next dose, this is what I take with me. It's a good thing I have a big purse, it's darn heavy with all of that in there! This time I had to run to the mall to pick up a couple things. The time before that was at a restaurant after my husbands broomball game. I definitely get some weird looks when I am sitting there measuring out all my drops and liquids. I wonder what they think I am doing...witch craft?! :-)