Thyroid problems or no progress?

I think the time has come for me to step into the reality that, either I am not getting better or my thyroid is messed up again.
I am in so much pain. The fatigue is just beyond normal tiredness.
My heel spurs are inflamed again, so that every step is a painful experience. I am waking up in cramps, toes cross, legs Charley horsed. I am getting hoarse when I talk. I am irritable, headachey and even my back is spasmed. My wrist are killing me and I just have pain every where. I don't want to give up on the AP, so my first step is going to be to get a thyroid panel and see if my Hashimoto's is flaring. I had a Rt Thyroid Lobectomy in 04. I cannot tell you how angry I was to find that he left the other 1/2 in there. I mean, yes the pathology was not cancer, but it was equally as large and I have Hashimoto's so there was no legitimate reason to leave it there. My theory (due to my large distrust of doctors in general) is that he left the 1/2 in there so I would have to go back to him to get it out later. You know return customer, keep that money train a rolling! Yes, I am being facetious. I can't help it, I know it is true. In most things, it is easier to do it right the first time, but no, everyone take a short cut....we'll come back for that later. Anyway, I guess I am going to have to test this old thyroid of mine again, maybe get an ultrasound. Hopefully, it is the culprit, so I can hold on to hope that the AP is working. It is the only hope I have to return to normal life. I hate living like this and want so much more for me and my family! If only I could find the way out. Remember, you have to be your own advocate. The health system will kill you if you don't stay on top of this stuff! I guarantee you I won't get a call from anyone asking me to check my thyroid. they know I have a problem with it, but they will never follow up unless I guide them to it. Keep on them, be your own advocate. It is this very thing that let my dad get a 7 cm lung tumor- the doctors knew he had COPD and was a prior smoker. Never did do a routine chest x-ray, but I guarantee you had they done one every six months to a year, they'd have been able to find the cancer before it was too late. So again I stress to any of you reading, don't wait for the doctors to do it for you. Get proactive in your health care, ask questions, demand test and if your doctor won't listen or spend the time to read your history or take you seriously-fire their butts. Don't let them ride around in a plush care, with the plush life while you sit there without an answer, in pain and die.

Father's Day

Today, is my first Father's Day, with out my dad. He died Dec. 20th 2007. I miss him terribly.
As for pain, I am still living in it. AP has helped, so I am praying for remission soon. I still haven't had a day without pain, but I went to Uvalde, TX with family, and other than a terrible sunburn, I really did ok. No migraine, only a few charley horses and some fatigue. Nothing compared to what would normally happen. I normally would have been bed ridden for days. Truly, it must be the minocin, because I tubed and kicked myself all over the pond, and am ok.
So, continue on as is and hope remission comes soon. Something to look forward to, finally!
Back to my dad. I keep seeing him lying on the floor, and I just miss him so. I wish he would send me a sign that he is ok. I just am so devastated. I mean, he always has been there for me. He wasn't an easy man and was surely crazy, but aren't we all a little crazy? I see him in the chair in the front yard, I see him in my van dancing a little jig. Such a huge hole he has left in my life.
Happy father's day, dad, wherever you are. I love you.

And so it goes

I am still on the AP and waiting. I have read on other AP websites, that the longer you are sick the longer it can take for the whole thing to reverse. So I am trying to focus on the positive, and continue through. I don't have a clue if I am like a dog chasing its own tail or if I am indeed on the way to a new way of life. I can only hope that it is taking a long time, because it took years to get this bad.
So for now I continue, one foot in front of the other.
The fatigue is really rough. I spent the whole day in bed Sunday, most of Monday and only be sheer force of will have I stayed out of bed today. It is hard to keep my eyes open, if I let myself lie down. So I am busy with anything I can find to distract me. Myspace bulletins, YouTube, email, made some homemade Chili. Now I am waiting for Dillon's baseball game. Anything to keep busy, but it is hard with the pain and fatigue dragging me down. I will probably take a peroxide bath, see if that helps. That with Epsom Salt is supposed to help. We'll see. Well, onward and upward. Carry on, till we meet again...hopefully I will have something of worth to say. Today wasn't a total loss. I did find out that aluminum foil has tabs on the box that keep the foil roll in place while you tear a sheet. Who knew that? I know I didn't. So, today did have something to offer. You have to count your blessings, no matter how insignificant they may seem. I spent years in the struggle with foil and in an instant the whole issue was resolved! Take that and run with it!

Fatigue

I don't know how to describe the fatigue I am feeling. I thought it was due to Herx, but have to wonder if that is the case, since it is going on so long. I am just so fatigued, I can barely keep my eyes open. Makes it feel like you are walking in a fog, completely detached from the world. I struggle to understand what people are saying to me. I hear the words, but they don't connect. I keep saying "what did you say?" and it frustrates me, and those talking to me. I am sure they think I don't care, or I'd be listening. I am listening and I hear, but the words bounce around in my brain, not connecting to meaning. It is so frustrating! My pain levels are at an all time high as well. I hate to even blog, because I sound like a complainer. People keep saying, when you going to update your blog? I want to, but it would be nice to come on here and say "Finally! Results!" yet here I am, just complaining. It doesn't help that my diabetes is so out of control. I really try but it is hard when you are so broke...it is cheaper to eat Grilled cheese than to buy salad. I mean to tell you if there is a way to screw up finances, I will find it. I rob Peter to pay Paul. It is my life goal to get out of this cycle of pain and poverty and to regain prosperity and charity. I want to give, not take. So please God if you are listening, I want my life back!!!
So, I am going to leave it at that. I don't want to turn this into a pity party (too late?)!
So here's to health, happiness and the pursuit thereof...

A Confusing Time

It is definitely hard to wrap your mind around relief. It has been such an illusive goal. I have tried so many quick fixes, herbal remedies, vitamins, pills, physical therapy, chiropractic options and massage. Relief is always out of reach or fleeting. It has been so long since I have had relief, it is indeed hard to envision. So you put up a protective barrier in your mind. It is easier to not expect it, because for over 10 years I have battled this, and each time a new diagnosis or new treatment is offered, I get sucked in (or so it seems) only to find several months later that nothing has changed. In the beginning I blindly took pills that had promised relief, long after the realization that they were not working. I was told by family early on, that the pills caused me to be a zombie, going through the motions and in a funk, but I didn't see it. The brain fog is always there, but I guess they saw something else. I was on Neurontin, Robaxin and other pain pills, and though I had no relief, I just kept taking them. Finally a few years ago, I decide I am only giving the pills a few months. If there is no difference, then I quit them. The last set was Methotrexate, and Lyrica. I was up to 450 mgs on Lyrica and there was nothing...might as well have been a sugar pill. Methotrexate scared me, but I was willing. After 3 months the Rheumatologist told me to quit. He then suggested physical therapy, again. I finally had hit rock bottom when my mom brought this Antibiotic Protocol to my attention. I am lucky that my family doctor listened, and read the protocol and was willing to try it.
So, I have had a bumpy two months. I definitely had an increase in pain, fatigue and am positive I am in a Herx reaction. The depression and mood swings I was unprepared for, but have since read is normal. I still am in pain. Yet, today feels different.
It is scary. I hate to say " I feel better," because I don't even want to let myself believe in something, only to fail. I want my life back. So much so that I am scared to hope for it. Yet today, despite fighting with my mother and feeling moody, I suddenly noticed my body isn't as stiff, my mind isn't as numb, and it scared me. Silly, I know. I am scared to feel good? I am scared I will "mind over matter" myself into a false belief of healing. However, that isn't my style. Ms. Negative Nancy, Eeyore to some, is not likely to think she feels better, unless she does....right? Oh, how I hope I am on my way! This is the closest I recall coming to being hopeful, truly hopeful. I will sing from the roof tops if this works. Stay tuned. Dare I say there is hope?

The New Arthritis Breakthough!

I am still slowly reading Henry Scammell's book The New Arthritis Breakthrough. I say slowly because fatigue zaps my ability to focus. I love this book, and it irritates me to no end to try and read the same sentence, over and over, because my mind is in such a fog. However, chapters 5 &6 blew me and my husband away. It wasn't that our story was identical, but the testimonial there is so familiar. I would manage to work my full day, but by the time I was home, my husband would have to get me out of the car. It was so frustrating. I was a young woman in 1999, yet the 30 minute ride home would prove eventually to be too much. From migraines that became so bad I kept a large coffee cup in the front seat, so I could throw up on the drive home, to fatigue that would be so strong I literally had to fight to stay awake. Several times I'd doze a little only to awaken to the sound of loose gravel. It was so scary. Then getting home, to find my body had frozen in an old lady stiffness. I didn't have the strength to lift my legs, much less my body out of the car. My husband would come and help me to bed, where I would eat dinner and soon be asleep. It was frustrating to my husband, but worse for me was my thoughts of how awful it must be for my kids to see, and watch me cry in pain. Or to hear them ask Teddy, my husband, why I was always in bed.
I think reading the testimonial really helped me to believe I am on the right track! She now has rare flares and has her life back. She can go shopping without it being the end of her day. I look for that day! I hope my sister gets on this protocol soon. She calls me on her way home, talking helps keep her awake. She is exactly where I was when I became disabled.
It is hard to watch, because if this protocol isn't the answer I believe it to be, she will go through all that I have, and I don't wish it on my worst enemy, much less my best friend! I pray this is the answer for us both. She has Lupus and this AP is also doing wonders for those with Lupus, RA, Scleroderma and Fibromyalgia and more. Again, if you find yourself losing hope, go buy this book and visit the Road Back Foundation! It isn't a fast turn around, so why wait? Grab the brass ring and run with it...I'll meet you at the finish line!

So much for everyday posting!

My intent was to post daily, but since I am so fatigued and in so much pain, it'd be like portraying myself to be negative in this treatment. I am anything but! I am looking forward to this being the answer. In the mean time,it is supposed to make me feel worse, so I am not discouraged when I tell you, I have never been so tired.
I wonder how it looks from the outside looking in, when a perfectly normal (quit laughing) looking person suddenly begins limping in pain, and a few minutes later be OK. It is what this disease does, and while it looks completely insane, I have talked to many with the exact same symptoms. It is like your body is a foreign entity, and it will defy you at any minute and when you least expect it. You hold a cup of coffee, trying to seem intelligent (which in itself gets harder to do because your brain synapses are not synapping) and your hand just lets go of its grip. It is crazy! Now your lap is filled with the hot coffee, and your family is looking at you like you flipped your lid. Maybe you have. Forget doing dishes...I think someone is stealing my cups and glasses, but I may have just dropped them all. I know the first thing I hope that this AP changes is the dead fog my brain is in. I want so desperately to know what you are saying, yet no matter how hard I listen it is just not getting through. I have to read the same sentence over and over, to understand. I like to think I am a fairly intelligent person and yet I will somehow switch my words around and sound like a complete idiot. Like " let's slip out the back, Jack" which is what I meant when I told my husband "let's slip out the Jack, Back"! And I will end today's rant with my sister's funniest brain fog moment: trying to sound like she knows what she is talking about, and proud she got through her point without a fog moment, ended her speech to her co-workers with " and you can put that in your smoke and pipe it!" Oh yes! It is enough to bring tears of frustration and laughter all at once. And with that I say " Please let this AP work quickly!"

So tired

Today has been rough. I am so tired. It is like it is an effort to breathe. I don't know if it is the start of herx, or just the tail end of this Daniel fast, or what, but I am so very tired. My eyes are watering and I just feel like blah! Oh well, I am not going to be negative. What I am going to do is go to bed very soon.
So my pain and fatigue levels are very high today. Maybe tomorrow will be better. Good bye for now.

Going through changes

Well, today is the third day of my AP, officially and of course it is too soon to tell anything. I am in the worst flare of my life, and if it is true that in AP you have what they call Jarisch Herxheimer reaction, or Herx for short, then I cannot imagine getting worse before you get better, but I am certainly up to it. I mean what choice do you have? This is no way to live, so yes it is worth the effort to try.
It has been the most trying time in my life. My dad died in December. I don't know how people get over such a loss, but it has just devastated me. What am I to do now? Well first off I am getting well. I do not want to live this life God has given me, as a taker. I want to be a server, a giver a blessing, not a burden. So the goal is before me, like a carrot tied to a stick, just out of reach, but I am hungry enough to go for it. I am changing my way of thinking. I need to be positive in my goal of a healthy, happy, productive life. It will happen! Too many testimonials to lose hope. And with that I leave you to ponder your own life and if you are one of my many friends and relatives suffering the same or like problems, I ask you to consider AP. Go to the website and read for yourself. There is documentation to take to your doctor. However, if you want to wait and see, I will be your guinea pig. Why not? What have I got to lose? Pain, helplessness and fatigue. And I am so ready to lose that! Stay tuned!

The Road Back

Well, it has been some time since I have written and I have decided to blog my journey back to life. It is my firm hope, that this new approach, called Antibiotic Protocols, which from this point on I will call AP, will give me my life back.
I started yesterday.
The only way to approach my lack of control and frustration is, first and foremost to take the control back. We have got to be advocates in our own lives, and get past our defeatist attitudes. I am the biggest pessimist in the word, for I am sure the grass is always greener, the cup is definitely half empty and I am sure I am invisible in a crowd, all the while being positive that everyone is staring at that invisible girl. Does that makes sense? No. So first I must drudge past my "it'll never work" attitude and try.
I have been diagnosed to death. As a child, I always had "growing pains" and after a car accident at age 12, I have had Charley horses and spasms in my legs.
I have always had pain. In 1997 I got my sickest after the birth of my 3rd child. Pain and fatigue, stiffness, and the worst case of what I came to know as Fibro Fog, where I suddenly can't finish a thought, or replace names and words with unrelated words, and basically look like an idiot. I began to work part time and go to school, thinking that being on my feet all day as a surgical tech, might be the reason for all the pain. However after two semesters I couldn't think clearly and has spent more time asleep on the couch, than living.
So, after becoming completely disabled and useless in my own eyes, I began searching for an answer. I have been to pain specialist, physical therapy, counseling, rheumatologist, family physicians, neurologist, endocrinologist, ear nose and throat specialist and chiropractors. This has occurred over 11 years. One problem is that I am the rare person, that despite negative tests, definitely has a real physical problem. No doctor denied that something is wrong, but they didn't know what. Now diagnosis is easy to come by, as I have been told I have fibromyalgia, diabetes, osteoarthritis, plantar fasciitis, heel spurs, Degenerative Disc Disease, Hashimoto's Thyroiditis, Goiter, Mixed Connective Tissue Disease, undifferentiated, mild neuropathy, tendonitis, carpal tunnel, restless leg syndrome, and rheumatoid arthritis.
At this point I now have run the gamut of pain pills that don't work, new vitamins that promise to be the cure all, physical therapy and stretching, and drugs like methotrexate, which is just a scary drug to take. After 3-4 months of Lyrica, Requip, and Methotrexate, I was taken off all three because I couldn't tell a difference. At this point the Rheumatologist, that I drove and hour and a half to see, spent 15 minutes or so with me and said, "well that didn't work, don't take it anymore, we'll MRI your wrist again in 6 months to see if it still shows you have RA. However, I think you have Fibromyalgia".
Now the frustrating part of that is,I came in believing he'd discover the source of my pain, and he gave me Lyrica is for Fibromyalgia. Now, he is back to the original diagnosis, but takes away the only medication that is supposed to help Fibro. I was up to 450 mg and could feel no difference, so I wasn't upset with the medication being taken away, I was frustrated that we had back tracked all the way to my original dx. It felt like a slap in the face. I left crying, with a script for physical therapy, and more frustration.
It was at this point that I gave up. It was also at this point that I found a website describing what I believed might explain me- RUPUS. Rupus is a name given to people with aspects of both Lupus and Rheumatoid Arthritis, but overlapping test for both, but no enough for either to be specifically diagnosed. As a joke, I sent my mom the link to RUPUS. I told her, "look, I don't need doctors, I diagnosed myself!" Of course, I was joking, but she read some of the side info and low and behold we found the Road Back Foundation.
I am reading, and this is a book all chronic pain sufferers should definitely read, " The New Arthritis Breakthrough, The Only Medical Therapy Clinically Proven to Produce Long-term Improvement and Remission" by Henry Scammell. The title is a mouthful, but it is a great and enlightening read.
I will continue my blogs on my AP treatments and success or failure. I promise I will be honest, and I think by now you can tell I am not one to fall for the latest, greatest treatment. I'll try anything to get my life back, so if this is the true breakthrough it appears to be, I will scream it from the rooftop.
And so the first day of the rest of my life began yesterday. For those of you suffering, what have you got to lose? I for one am ready to live again and I sick and tired of being sick and tired.