[BlackRoze]

I will always be free

You will not win, I will always be free.
Finding hope in tomorrow, but fighting to get threw a day.
I will not give up, I will not let you defeat me.
You may rob me of my health.
You may inflict great pain.
You may take my body, tearing it to threads.
You may weaken my spirit.
I will not let you take my life.
Till my last dieing breath, till the end of time.
You will not win.
I will always be me.
I will always be free.
Finding hope in tomorrow, but fighting to get threw a day.
Till my last breath.
I will always be me.
I will always be free
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Learning to live with Lyme Disease after maths & Hoping for a cure.

[Chemar]

BlackRoze

thank you for the strength you have so poignantly managed to express in your writing. I know you will touch many here with those words.

I have friends at church who are going through the agony of a whole family suffering Lyme Disease.
I am going to point them to your writing for encouragement.

thank you and my prayers are lifted for you too

Cheri

[watsonsh]

That was very powerful BlackRoze. Thank you

[tangye5]

As the medical community comes to the realization that Borrelia and the co-infections that come with it makes the undetected disease, for many, a nightmare. All the states will some day adopt a better test, similar to labs like IGenex, so that many of the patients that are told they do not have Borrelia will get timely treatment. MY JOURNEY took 17 years and a list of specialists that is mind boggling. Many needless surgeries that could have been only a thought instead of reality. A brain rupture in 1999, ten years after an engorged tick was removed from the back of my head and dismissed from detection because Texas did not have Lyme Disease. The Chronic Fatigue alone was bad enough to drive an active person crazy, but being an R.N. having to deal with eye floaters that obstucted my vision while trying to care for my OB patients, on a very busy hospital floor, was a great distraction. The the dizzy spells that could not be explained by a Phd. Audiologist was a bummer. Bladder infections that took multiple doses of antibiotics to eradicate finally turned into a kidney infection that took months to heal. Degeneration on spinal series that was questioned by several orthopedic surgeons because of the rapid decline as well as joint damage that could not be given a name. I had plain old osteoarthritis, Tests for rheumatoid factor was negative. No anemia, but an abundance of neutrophils on multiple blood tests had the medical care givers scratching their heads. Had been to physical therapy for knee, shoulder, ankle and thumb joint problems. Have have two shoulder surgeries on Left shoulder and each time they went in I had such build up of deposites that all the therapy and steroid injections just did not work. Many benign lipoma tumors removed from feet, breast, and back because growth was quick and tumors became large quickly. When I had the ruptured brain artery in August of 1999. I thought I had finally found my problem. Fluids were being infused in right hand and an antibiotic Rocephin in the right hand. I was told in recovery that the next two weeks in ICU were going to be the most difficult time of my life. They would have to awaken me every hour on the hour to check neuro. signs. Those two weeks were two of the best that I had had in 10 years. The Fatigue left, my vision was flawless, my joints felt new. Three weeks into rehab. to learn to talk and walk I received a call from my daughter, who was a second year dental student in San Antonio, telling me she had just heard my story being told to her class that morning. It was about a man that had been suffering with the same symptoms, surgeries, to include an aneursym rupture of the brain. He was diagnosed with Borrelia (Lyme Disease). My daughtered begged me to ask my family practice doctor to test me immediately. She also said that the man had had an elisa test which was negative and his doctor went on to a western blot to be sure. Bingo! His titer for Borrelia was very high. He had been suffering for only five years and the drug that they used was IV Rocephin for one month and his symptoms cleared up. I had the first test and no surprise that is was negative. The Western Blot was positive and my doctor spoke with many of his physician friends about the tick that was presented 10 years prior to this particular medical phenomenon. One of the doctors said that Borrelia goes through stages - spirochete to endomorph to cyst and back to spirochete. He thought two more weeks of IV Rocephin was probably called for. I was a new person. I felt like my life was returned to me. Six to eight months later the symptoms came back with a vengence and now I had a new one. Malaria. Went to an infectious disease doctor, to be told that the Rocephin had killed the Lyme Disease and that I had not been anywhere that I could have possibly picked up Malaria. Every four weeks I would sweat and chill and wish I could just roll up and wither away. Our request to return to Colorado was granted and I went back to my original doctor with breathing problems, because of an extremely low oxygen saturation rate. Catscan of lungs showed nothing. Then on to a pulmonary doctor, who noticed the Lyme Disease in my chart and sent me to a Lyme Literate Clinic. The first thing they did was send my blood to a top notch Lab. The results were two strains of identifiable Borrelia and two strains of Babesia- Microti and WA1. This was the reason for the malaria symptoms. A chest cateter was placed and IV meds for the cystic Lyme and the active spirochete. Also found to have clamydial pneumonia in my DNA and off the charts CMV, Epstein Bar, Herpes 5 and 6. My disease is Chronic Complex Inflammatory Immune Deficiency. I have gone on to have something more complex than Lyme Disease. Infectious Disease doctors are correct when they say Lyme can be cured in two to four weeks on oral doxicycline. Years ago many of us were not treated and now we need treatment for the above mentioned disease I do have, and yet the Lyme doctors and the other doctors are fighting among themselves about care needed by those of us that were at one time dismissed. This is not acceptable! No one is arguing that if treated quickly that this disease is treatable - but if untreated for 10 years we have a long term treatment that is needed. When a month of IV treatment lasted for six months of normal health and then have the disease symptoms come back with a vengence, would that not mean that the disease has not been eraticaded? It is an individual disease. The tests done at the time the disease reappeared were done at the IGENEX Lab. The tests showed active disease still present and actually showed which infections I indeed have! Test the patient with a lab that is qualified to read the bands and check for underlying diseases that most probably are making it more difficult for some individuals to heal at the same rate as others. I am most fortunate to be alive and vertical. Much damage and more surgeries for my spine are needed, but since the IV therapy the damage has halted. Ms, ALS, Chronic Fatigue, Gulf War Syndrome, Lupis, Fibromyalgia to name a few may get their start with this thing called Lyme Disease! Treat quickly - but consider long term treatment for individuals that have gone into something beyond simple Borrelia. Thank you, pam482@hotmail.com

[Idealist]

I second Chemar and Shelley. This is a very powerful poem, and uplifting too. You show a lot of courage in these words, and I hope that helps you to deal with your condition day by day. All my best to you, Black Roze...

Idealist

[BlackRoze]

Originally Posted by Idealist

I second Chemar and Shelley. This is a very powerful poem, and uplifting too. You show a lot of courage in these words, and I hope that helps you to deal with your condition day by day. All my best to you, Black Roze...

Idealist

Dear Idealist,
I hope it does help people that are suffering with all types of illnesses, not just Lyme's. But I my self use this as a tool on really bad days..like to day. '

At this time I'm fighting fighting another ordeal with both of my feet, and not even able to stand. I get server shocking over a 1,000 plus times a day and really bad burning. Thankful there is no infections which i found out today. Poor doctors don't know what to do with me. Who ever would have thought a simple toe nail remove to prevent future infections would end up like this. Not i thats for sure. I'm Dealing with debilitating pain 24-7 at this point. It helps pull me threw daily. I hope other will use it as a tool too and bring some comfort and strength to fight not to give up.
I have always been a fighter, when told i cant, I'm one to prove I can and will just because I'm told i cant. Just as i have learn to read and write even throw i have a learning disorder. They said i would never learn to read nor write. But guess what here i am... ...Some times i may come off bossy, not meaning too, even told many times i have a big mouth. I'm one that just don't beat around the bush, and likes to get right to the point. I treat my illness the same way. I fighting it, and i will not give up. I find it easer to sink my self into my work, taking my mind away from my illness does help deal with the pain i suffer on a daily bases. I just hope it can help others and bring some comfort as it has help me, and contentious to help me daily.

By the way everyone thank you for your kind words, and the warm welcoming you have giving me. You have made me feel at home and able to share and not alienated me as i have been in the past . Thank you all.
Oh and i will post some photos of some my other art work if no one minds.