Tuesday, October 23, 2012

Picc Line

I have't updated in a while and many things have changed! I was hitting road blocks with the oral meds so my lyme doctor and I decided it was best for me to get a picc line put in and get IV treatments. I was really nervous to get the line put in, I mean there was going to be a tube inside my arm to my heart that stayed there!! Ew! I knew I would be fine once it was in but the process of getting it in grossed me out. My hubby came with and I had two great nurses. There was a little trouble getting it in the right location but once it was in the correct spot I was good to go! Its been really great! I forget its there most of the time and once it healed I could do normal things with my arm again. My nurse said I could even lift weights if I wanted to. Note to self-get my butt in gear and start working out again ;-) I have had one blood clot in my line but it was really no big deal. My nurse came over and put meds in my line to take care of the clot and the line worked again!

I started out on one drug that was one IV a day, then I got bumped up to two IV's a day. Currently I am on two different IV drugs. One is a cyst buster that I do three days a week, twice a day. The other is the drug I started with that is four days a week, twice a day. I was warned by many that IV therapy is really rough and I will be down and out for a while, especially the cyst busters. Of course I have had bad days but its been a blessing to have this treatment. I have come a long ways in a very short period of time and I am not herxing like crazy like many people thought I would. I love this treatment, I only wish I would have done it earlier! Lets hope I keep getting better and will enter the world of remission soon! How awesome would that be! I never thought it was possible after 5 1/2 years of fighting for my health!! Check out facebook for more pictures of the picc line process.



Monday, August 20, 2012

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.

Thursday, July 26, 2012

Joint pain-Lyme or Damage?



Joint pain was one of my first symptoms 5 years ago, one day I woke up in a lot of pain and my fingers frozen in the claw position. I couldn't pick my baby up out of her crib, I couldn't unscrew her bottles, it was hard to zip things, button things, snap things, etc.  It just got worse from there and my body would add more and more symptoms as time went on and on until a doc FINALLY diagnosed me with Lyme Disease along with the co-infections Babesia and Bartonella. Fast forward 5 years and 2 years of treatment and my body is in a much better place. I normally don't have joint pain anymore unless I push it. So which is it? Lyme disease or permanent damage from going so long with out being diagnosed and treated? I often wonder this. According to one of my lyme docs my Lyme and Bartonella are in remission and I just have Babesia left. This one has been the hardest on my body and hard to treat and get rid of. So when I over do it and my joints hurt, is it the babesia? Maybe my joints will always hurt and get sore when I am more active. If I do a lot of sewing or crafting, I am sore. If I walk a long ways, I am sore. If I work out, I am sore. Maybe I am just not active enough? Maybe babesia is hanging on? Or maybe that is how it will always be. Its frustrating not knowing. At least it isn't as bad as it was 5 years ago. I just hope that one day it will totally be gone and there are no lingering effects of Lyme and I will be in total remission.

Friday, July 6, 2012

Toxicity




Impending doom fills the air


The fog takes over your brain

It is thick like sludge

Your thoughts slow down

You feel stuck in between two worlds

The toxicity takes over

You can’t think

You can’t focus

You are no longer thinking like a person

You are thinking like the monster that has taken over your brain

You want out

It doesn’t matter how

You want to be alone

But know you shouldn’t be

You want to run, but the monster will follow you

You want it to end

Even if the end is truly the end

You know you need to surround yourself with those that care

You don’t want to, but force yourself to

The disease can’t win

You are stronger than that

You are strong

You will beat this


You will fight like you always fight

You are strong

Thursday, June 14, 2012

Panic Attack

Panic Attack 

Everything is loud like a fun  house
I cringe, plug my ears
Nothing helps
My chest is tight
A giant is sitting on it
My heart is being squeezed
I can't breathe
I need air
It's thick and can't get air
The room is spinning
I close my eyes, try to focus
Focus
Focus
Breathe
Feel the room around me
Feel the ground
Breathe
Breathe Breathe
Count, inhale
Count, exhale
You will be okay
You will not die
Focus
Breathe
Inhale, exhale 
Escape the noise
The body slows down
Count, inhale 1-2-3-4-5
Count, exhale 1-2-3-4-5
Slow down
The room slows down 
Breathe 
Breathe
Feel the air
The room stops moving
You are back
You are alive
You are breathing 
You are okay 
The giant has left
You are breathing 
Take a deep breath
Feel it in your lungs
You are okay

Julie 2012


Tuesday, June 12, 2012

Update

Thing have been kind of mellow going from drugs to drug breaks. Now I am on new treatment for 8 weeks and its already been rough. Lot of bugs dying, that's for sure!! Even though it is miserable I know that this is how I am supposed to feel and it just means the treatments are working. Today I have been a sick, over heating, sweaty, pukey mess today. Luckily the hubby was home from work so took care of the kiddo so I could sleep all day. This too shall pass and I will come out better in the end.

Saturday, May 19, 2012

Coffee Enema Detox

Great video explaining how coffee enemas work for those that are interested in trying it. Its very good for your body


Tuesday, May 15, 2012

What I Wish I Knew Ten Years Ago



•What a deer tick looks like and how very small they are


•When a deer tick is engorged with your blood it can look as big as a wood tick


•How to properly take a tick out. Do NOT squeeze the body, use a tweezers and get the head


•You don’t have to be in the woods to get it, you can be in your own back yard or right in the city


•Not everyone gets the bulls eye rash


•If caught early and you treat right away with antibiotics it can potentially be enough to get rid of it


•If caught later, you could have years and years of treatment and the damage may be irreversible


•Doing a full body check every single night is a key factor to find any ticks either before they attach or get them out as soon as possible


•Showering after being outside lowers your risk to get any unattached ticks off of you


•Putting your clothes in the dryer after being outside can kill ticks attached to your clothing and lower your risk


•Pets can bring ticks into your house and they can drop from them onto your bed, couch etc and then attach to you


•Kids are at the highest risk


•Keeping your lawn very short and cleaning up leaves right away lowers your risk


•The Elisa test they do at a normal clinic is a horribly inaccurate test and normal MD’s are not educated like they should be about Lyme Disease and co-infections


•You need to see a Lyme Literate Doctor to get accurate information


•You should be clinically diagnosed in addition to the advanced testing, there is no test out there for lyme disease that is accurate enough to 100% go off of


•If after going to a million doctors and getting nowhere, and getting diagnosed with random things, you are still not getting better you need to see a lyme literate doctor to at least rule out lyme disease


•Lyme Disease isn’t called the great imitator for nothing. It can imitate MANY other diseases out there 


•Do your homework and fight for your own health. Only you know how you feel

Friday, May 11, 2012

Doctor Update

I went and saw my out of state doc last Friday for my in person check up! It went great, love my doc! He thinks that my Lyme and Bartonella are dormant and I just have Babesia left. How awesome is that!!!!! I have two out of the three in remission now, woohoo!! So now we are slamming Babesia even harder to try and kill it all off. I had a little drug vacation and started back today on some powerful drugs. In 3 weeks I will add more and gradually bump up to the higher dose. I am a little worried about how much herxing I will be having with such strong drugs, but I have had plenty in the past two years already. So I say bring it on! Let's kick it's butt!! Let's hope in 3 months I am in a much better place, I am making some huge strides and SO excited. Babesia has been the hardest one for us to treat so we don't know how long this process will take but at least there is a light at the end of the tunnel now. Yay for good news!

Wednesday, May 9, 2012

Two Years

Well, I made it. I have had treatment for TWO years now, wow! I honestly didn't think I would make it. The first few months were SO hard that I thought I would die in my sleep. And when I woke up in the morning, I was disappointed I actually woke up. I just wanted it to end. I have come a LONG way. Two years is a long time, but when you start feeling better it doesn't seem that long ago that I started this process. I know people that have been and are in treatment for so much longer. I am thankful that I am feeling better and can see the light at the end of the tunnel. Lyme is a life long battle for some, but for many it's just maintenance and you can still live a normal life. I am getting closer and it's a nice breath of fresh air! I will update you all on my out of state appointment in the next post!

Wednesday, May 2, 2012

Lyme Disease Awareness Month

It is May, which mean it's Lyme Disease Awareness Month!! What would you like to know about Lyme Disease??

Sunday, April 22, 2012

Chronic Illness and Suicide



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

ER Visit





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

Drained




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

"Persistent Infection With Lyme Disease" Dr Phil

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 Lyme Disease



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

Worn Out But Still Pushing Forward

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!!

Friday, March 30, 2012

Lots Going On

There has been a lot going on over here. I found out on my phone appointment with my out of town doc I was ODing on many drugs and didn't know it. The communication between doctors and patients really needs to improve. My local doc types everything up and mails me a summary so we are both sure we are on the same page after an appointment. Out of town doc does not and I wish he did. There has been a couple of times I haven't been on the correct schedule because of this and it's dangerous. We were both surprised I didn't have more negative effects, the combo I was on was very dangerous. Needless to say my local doc had a nice chat with out of town doc. This should NOT be happening when you are working with someone that is sick and has brain fog. We can't remember what the rules were for a certain drug we took 5 months ago when we re-take it currently. You need to tell us what we can can cannot be on. So after that was figured out I had to go off all drugs for a bit, then back on the one very powerful drug, then off everything for another week. I am finally back on track and this last Monday started a higher dose of drugs and Bicillin injections this week. I forgot how sore and tired they make you sometimes! I am worn out! I have been herxing this week but it's nice to be back on track and kicking the bugs butt!! My new injection schedule will be two shots every other week and start to wean off of them. I will keep this schedule until May when I fly out to see my out of town doc in person to discus my progress and what the future holds for me. I am still getting stronger and making progress. My new exciting news is that I start physical therapy next week. I can't wait to get some muscle tone back!!!!!!

We also moved out of our house and in with family. It's a big adjustment, I am not used to having to go by someone else's rules but it's working. We still have a lot of organizing to do but very glad we have someone to take us in, in such a difficult time financially. That's it for now, keep fighting the good fight!

Friday, March 2, 2012

PTSD/EMDR




Many people with Lyme Disease or the loved ones of those dealing with Lyme have PTSD, Post-traumatic stress disorder. So what is PTSD--Post-traumatic stress disorder, is a serious condition that can develop after a person has experienced or witnessed a traumatic or terrifying event in which serious physical harm occurred or was threatened. PTSD is a lasting consequence of traumatic ordeals that cause intense fear, helplessness, or horror, such as a sexual or physical assault, the unexpected death of a loved one, an accident, war, or natural disaster.

It makes sense, there is so much trauma around the disease that some people can't avoid it. Can you blame the loved ones? They deal with a lot, it's hard to watch. Some Lymies deal with being bed bound, seizures, passing out, bad allergy reactions, loosing the ability to walk, stop breathing, loosing the ability to drive, rage, fighting with friends and family members and not be able to control their rage, lash out physically and verbally, being in extreme pain, run away, suicide attempts, etc, etc, etc. The loved ones watching this feel helpless and don't know how to help. They can see how miserable it is for the lymie but they can't feel it for themselves and aren't sure how to help. It's traumatic for them to deal with and watch which can cause them to have PTSD.

How can someone with PTSD get help to deal with it all? Well there are many ways but one that may work is EMDR. What is EMDR--EMDR--Eye Movement Desensitization and Reprocessing involves recalling a stressful past event and “reprogramming” the memory in the light of a positive, self-chosen belief, while using rapid eye movements to facilitate the process. Theories as to why EMDR works are still evolving, but many people have found EMDR to be extremely beneficial. EMDR incorporates elements of cognitive-behavioral therapy with bilateral eye movements or other forms of rhythmic, leftright stimulation. One of the key elements of EMDR is “dual stimulation.” During treatment, you are asked to think or talk about memories, triggers, and painful emotions while simultaneously focusing on your therapist’s moving finger or another form of bilateral stimuli.

I have a couple childhood trauma's that have caused PTSD my entire life. I am just now dealing with them and am using EMDR. I didn't realize how much they effected my life until adulthood. I was shocked at how well it's working for me and wanted to make a point to share information with people that might benefit from it. My childhood trauma has nothing to do with Lyme Disease but I do know many people that have PTSD from lyme disease and other chronic problems. Maybe EMDR might help you? In my sessions my therapist uses tapping on my knees, in the past I have also used the tapper machine but for me the tapping works better. I have worked through one trauma and feel so much better about it, it really is amazing how well it works! It helps to release it from your brain and body and you learn how to get past it so it doesn't control your life anymore. It's an amazing feeling to be free from it. I am currently working through the other trauma and getting much better with it. It is not easy work, you have to work hard to get through it but it is worth your freedom in the end. Some people need many sessions and some people only need a couple. It's different for everyone and different depending on how traumatic the event was. If you are suffering maybe you can give it a try or pass the information along to someone you know that may benefit from it!

Tuesday, February 28, 2012

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!

Saturday, February 25, 2012

SafetySuit - These Times

My sister sent me this video. I think it's very fitting for most of us in the lyme community. BUT-- "It Will Pass"

Wednesday, February 22, 2012

"We'll Watch Over You" by Rob Shaver (Lyric Video)

I have had a bad couple of days and music always makes me feel better and grounds me. This was written for a local high school hockey player that was paralyzed during a game. I think it's fitting for the chronically ill also. Enjoy!

Tuesday, February 21, 2012

Rough Week

Last week was rough, I had a ton of pain. It was the kind of pain that was unbearable and pain meds didn't even touch it. I was preparing to sell my crafts at a craft sale so I was doing a lot of last minute prep which apparently caused pain. I guess too much sitting on a wood kitchen chair and using all my joints and getting up and down from the floor. It's a little disappointing since I was doing so great and thought maybe I was past the really bad stuff. When the joint pain and swelling start to set in again then I start to wonder if it will truly ever be gone. Maybe that's the damage I will have forever because it took so long to be diagnosed? Maybe it's because I am still having trouble with babesia? Not too sure, but it sure was nice when it was gone.

Today I am finally feeling more like myself with much less pain. Last night I had some pretty intense uterus pain so trying to figure that out but overall I am feeling much better. A lot of lymies have a 3-4 week cycle were their lyme flares up for about a week and then they are back to their average self. I never had that but the last two months are proving differently. I would rather not fall into that category! ;-) I have my injection today and appointment with my local lyme doc so I will be back on with an update!

Friday, January 27, 2012

I Won't Give Up

  • I won't give up on life
  • I won't give up on treatment
  • I won't give up on my family
  • I won't give up on all the things I believe in
Because in the end, I will have a healthier, stronger, more satisfying life. This disease has changed me for the better. I think anyone going through a big struggle in life, or should I say many big struggles in life, becomes a better person. You learn so much on your journey. You see things differently than before-you cheer when you can step out of bed onto the wood floor and NOT be in extreme pain, you cheer when you can walk into Target and not have to crouch down in order to avoid passing out, you cheer when you haven't had a panic attack in many months, you cheer when you wake up and you aren't drowning in night sweats, you cheer when you can keep up with your kid, you cheer when you can make it through the day or week with out a nap, you cheer when you can sleep all the way through the night, you cheer when you can go out on a date with your husband and survive the night, you cheer when you have friends that will stick around through the good times AND the bad! You cherish every little thing you have ever taken for granted in your life before you became sick. You can either drown, or survive. I choose to fight to survive. I choose to look up even if the sky looks rough. I am learning who I am again, god knows I am tough! These may seem like little things but to me they are big, it means I can start living again and I can see the good things. I am not always able to, but for today at least, I am looking at the good things and I WON'T GIVE UP.


I feel like this song was meant for me, it's so fitting and I love it

Thursday, January 26, 2012

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!!

Monday, January 23, 2012

Make the “Double Pinkie Swear Promise” Suicide Prevention




"Lyme Disease is such a devastating disease. It is so easy to become isolated and desperate with the never ending symptoms that Lyme Disease causes. Not to mention the abandonment of friends and family, and the rejection of the medical community. If you are feeling this way please reach out. There are lots of groups that can help. It can be hard to reach out, or even embarrassing. But those are NOTHING compared to the loss that your family and friends will feel if they lose you. So please reach out to others. Other Lymies will understand. I’ts okay to feel lonely, depressed, angry, or alone. These are real feelings just as happiness, joy, and all those are. But remember this is an infection in your brain making you feel this way. It may be just temporary. Try to hold on. You never know what is around the corner."

Click HERE to read the rest of the article.

Thursday, January 19, 2012

Cleaning, Cleaning, Cleaning and Painting




I had a rough week a couple of weeks ago but I finally feel like that has lifted and now I am feeling pretty good! Our house is on the market now since we cant't afford it on one income so that means showings. I was up until 2am last night and cleaned and painted with a friend until 1:00am. This morning my husband and I cleaned up the rest of what was left for the agent to come over to take pictures of the inside. I have never cleaned so much in a short period of time, even when I was healthy. Today I would say I am only as sore as the average out of shape person would be. This is HUGE. I am not dying of massive pain, how crazy and great is that!! It means I am making big improvements!!!! Next on the list--starting working out again, very slowly of course!

Monday, January 16, 2012

Saturday, January 7, 2012

What do you do when you are blue? Well play and sing of course!

What do you do when your drugs are making you beyond toxic and you are fighting the blues big time? Well make a fool of yourself of course and broadcast it for everyone to see. Hope our craziness makes you smile


"We'll Watch Over You" by Rob Shaver & Ryan Etten (Lyrics)

Tuesday, January 3, 2012

Appointment Update



Had my local lyme appointment today. I have been feeling pretty darn good overall the past 2 weeks so we are going to leave things as is for a bit to give me a break before adding anything else in! Great news!!! I have been gradually loosing some of my horrible symptoms over the past 2 months so I am getting there! So great!! My out of town doc thinks I will make really good progress by summer! Yay, bring it on!