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.

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!

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!

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!