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My life was a kiddie roller coaster, my life with Lyme is a MAJOR roller coaster! Every now and then I go through a dark corner....I am still doing better though. Most days I can function all day as long as I don't exercise. :( But I keep trying. Last Sunday I did 10 minutes of light weight training. Only 5 sets total, and yesterday, (tuesday) was one of my worst days in months. I was stuck in bed all day with a pain level of 6 out of 10. Its always the 2nd day after exercising that tells me. So I get the hint from my body. No exercise for me, for now. ;) I will have to be grateful for simply being functional again, and remind myself that last year at this time I could not even hold my own head up for more than a few minutes without pain. And now I can go all day most days. Nothing strenuous, but I can do things finally. I can go to dinner and don't need pain meds! I can go to a 'Super Bowl' party and don't need to medicate (except maybe a little wine :)). I have come so far, with so much to be thankful for in my physical self. My cognition is still off though. brain fog is back to a degree and it is hard to read and absorb new information. I would love to go back to school, but my brain does not seem ready yet. Maybe a light part time job soon....
And my weight is back to normal! I am a whopping 120lbs now! Baby got back! ;)
Mentally, I am having some major difficulties in my circumstances that are challenging to say the least. I am hanging in there the best my delicate system can. My doctors think I am doing GREAT considering the challenges I am now facing in my family life. I can surely say this is one of the most difficult times in my life this past 6 months. But I will conquer! The alternative is not an option.
I make sure I continue to care for my body, so I don't relapse hopefully. Rest, and movement as tolerated. I have been moving around more these past few months than I have in the last 5 years, so I am happy for that. I go twice a week to therapy, to deal with my PTSD from various events in my past. It is going well I think.
So today I will try to focus on the things to be grateful for and let the rest go to God. <>< Tweet 0 Like
0 1 Comment TURNING A CORNER...?
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Yes, that is wine! lol. I was celebrating the day my non-profit status went through! I love wine, don't worry I did share. And yes, I did cut my hair again. I was losing so much, and it was breaking, too many meds or something with the illnesses. The bottle was called Earthquake, yummy stuff! I chose it also for the name as I am wanting to shake the world and make them listen!
So I have SO much to say my fingers cannot keep up!!
Tonight is a meeting at our local high school auditorium (very nice facility!), it is benign presented by Rocky Mountain Lab which is located in the same neighboring town I live next to and where the public address will be made. Also where my kids go to school. In between there and me is where the new ticks were found that carry Tick relapsing fever. Which upon research I believe is exactly what triggered my body's decline starting in Feb. 2007. I will be in attendance of course! I will arrive early handing out 'reputable, acceptable' information from the NIH and the CDC on tick relapsing fever and Lyme disease. Along with Tom Schwan's article written up in our local paper where they call it a 'bacterium' and never mention borellia! No worries, I can help educate, heck I am trained to health educate, literally! I also printed off his article with my questions for him based on the article's vagueness attached to handout. I feel like gas has been poured on my fire! like a kid waiting for Xmas! I am willing to bet he is the one who was bickering back and forth online with me after an editorial on my last local front page article. He even has patents in Lyme disease research with Borellia Burgdorferi. But his knowledge seems to be limited to Burgdorferi.
Enough of that, as for my health, I am doing great now! I had done 7 months of cannabis oil that seems to have repaired many broken things in my body. As a result of it I became 'overmedicated' as my body was repairing and landed myself in the hospital. I overdosed on my meds due to severe depression and bi-polar mood swings. :( But THANK GOD because I was saved because of His grace and was sent to a psych ward where we all wore purple scrubs (purple was the new black). After a rough detox and some med tweaking, I am a new person with a clear head and no longer taking even half of the meds as before! No more thyroid meds at all! And while my body is too skinny (100lbs), I feel better than I have in 5 years! Pain is still bad, along with arthritis and still many other 'Lyme' symptoms, I can cope as long as my head is on straight. And I learned a ton in the hospital during my stay. So I have no regrets aside from the pain I have caused to those close to me. :( Time.....
While in the hospital, i was able to receive almost daily visits from a chaplain or two, maybe it was their healing prayers said over me. :)
So onward I go to fight another day for awareness and to educate those in need, wether they want it or not! LOL! ;) ALREADY AUGUST!
I cannot believe it is August already! It seems i was just headed to Pocatello, ID for a new therapy. Which did not succeed in getting me off the atbx. :( so after feeling crazy for months, I am getting back on my old regimens of atbx and babesia slams. Not sure which is worse! okay, thats not true. i do much better on atbx, I just hate that fact!
It does seem some things have improved in my head with the addition of previously metabolized B vitamins, no, its not chewed up from a bird! LOL. they are rx forms that go straight to the brain without needing to be processed. Interestingly enough my LLMD says most all her chronic Lymies have the same double mutation on the MTHFR gene like me. Coincidence?
Had a great fundraiser in my local town this past July and looking forward to another in November with a great band! Stress levels are always high in my house due to the fact that my husband, 16 yr old daughter, and my 19yr olds girlfriend have lyme as well as my 6 year ol "ONE OF 300,000"
I was just pondering why on my 1st photo I was smiling. I was sent a nice email from the organizer to let me know, while they like my photo and thought I looked good, they would need a new one where I looked more upset in order for my picture to be included. I got it. They want to send the message in a certain manner. So I compiled happily (lol). It was hard not to smile again. lol But hopefully in this picture I was able to come across in a way they are wanting. Because I really do want to be included. So anyway, as I was thinking, 'why was I smiling'? That is sadly something that is hard to do on too many days. But the project "One of 300,000" was something to be happy about. We as a Lymie population are growing stronger and joining together to be heard. And I get to be a part of this revolution of sorts. While having it certainly sucks! There is purpose that can be found if you are willing to look for it. I am relieved to be able to put my voice out there even though it is hard just to make it to all my doctors appointments. Which I feel blessed to be able to do as all too many cannot afford that luxury. :( But on this day I feel blessed and grateful for my loving family and friends, having a LLMD and a LLND who know and talk to each other in order to better treat me. And the abilities to get treatment. Those are all things to be happy about. I hope I can remember to feel like this everyday! ;) <>< SSDD- SAME S**T DIFFERENT DAY.....;)
have not looked around the site in a while.....added my amazon favs today. 16 months into IV therapy and I stopped improving after 12 months for some reason. I took a month off on Dr.s request to check body/lyme status, and I regressed over the summer. :(
Now I am back on Iv's and other meds and my gallbladder has decided to start being fussy. nauseated if I don't eat, nauseated if I do.......feeling a bit at a loss of what to think or do now.....LLMD's are now working on getting IVIG therapy for me (http://en.wikipedia.org/wiki/Intravenous_immunoglobulin)
And then on to Hyperbaric oxygen therapy.......it seems from my research, these are the last attempts that can be made........scary thought. Could this be as good as it gets? Lord I hope not! I still cannot do much out of bed with out paying heavily for it. Could this be my life........? I thank God for my husband who has taken over in the house with the kids and taking care of me.
<>< LYME LEGISLATURE WAVE 2015....
08/08/2013 KEEPIN' ON....
So I just keep plugging away at treatment and trying to fill my days with mental activity, so I do not dwell on the darker side of the lyme brain. It is harder some times than others, and right now I am struggling. While I trust God,(really), It is hard to image the possibility of living the rest of my life this way. The recent story of Jeremiah Katches has me filled with doubts and questions among other emotions like fear and worry. Not just for me, but for my family too. How many thousands of lives must be destroyed before something truly life changing for lyme patients is done? Why will none of the celebrities with lyme unite and bring awareness. Some talk a little, but are not really doing anything.....I am trying so hard to make a difference. But what if it is all for naught. I started out with so many ideas and such a strong response, that has dwindled. I hope it is the calm before the storm. Each day I try to do at least one thing toward spreading news of the mob. But I have been physically and mentally drained, and I lost my smile again. I have hit up NBC, ABC, and OWN, so I guess its time to check out CBS and FOX..... FLASH MOB T-SHIRTS, T-SHIRTS, T-SHIRTS, AND TIPS
So the 1st of hopefully more t-shirt orders has gone in! Logo on front, Lyme Kills on back. Should be in and up by next week. Pricing will be my cost+shipping only until the end of April. After that I will raise the price to raise funds for our cause. JANUARY 14TH, 2013
SO I am now close to exhausting all readily available to my mind ideas as far as outreach for mobbing, or just getting tired.........ocd must be wearing off. ;)
I may slow down, but I will not quit until after May 4th! WOW!
How blessed am I! I had a crazy idea and went with it based on my gut, and wham! I think we have something awesome happening. I will work as much as I can to be sure this is carried out as well as possible even though I have no idea what I am doing! LOL ;)
Its not about me (thank God)! It is about the lyme nation across the globe. We NEED positive attention. All the negativity surrounding this disease I think intimidates people into getting involved.
God does not call the equipped, He equips the called! thats what I keep telling m