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!

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!

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!

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"

"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!

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!

Good Lyme Disease update