Tag Archive | Fibromyalgia

Thriving Anyway

Responding to my friend, T’s blog today I realized something pretty powerful. As I read all the challenges she s facing going back to school; I also realized that this woman who I met initially and bonded with completely because of a disease is my constant mirror. In her reflections I see myself.

Thriving T* and I met, became friends and made a bond with each other that we would not rest beside negativity in our environments, and NOT looking at our lives as we are the victims of anything. We so are not. Instead she & I have a made a promise that we have kept. The promise that despite what is going on with our bodies we are still in as much charge over our own lives as before. We have the power to thrive.

Thriving means moving forward with life. Not letting the road bumps in the journey throw you out of the race.  My friend Thriving T* sets a perfect example. Checking my own self inventory against the back drop of this promise has kept me focused. I am not defined by one thing in my life. why would  I allow an illness railroad me? Thankfully I am ahead of this illness and know its antics. I am in more control now than I ever have been.

You will find at T* blog http://itsarealpain.wordpress.com/2012/09/22/day-104the-spark/#comment-614  full of postings of graciousness and kindness. Thriving T* is a power house to be reckoned with and as someone who has Fibromyalgia as well.  I am most impressed with what this woman does in spite it.  She is a friend of  my own heart.

Thriving T* has kept me on my less than narrow path when I started to falter. She is a constant gentle reminder that I can do this. I can make what I need changing – different. What I want & need it to be.  I have much assurance that when I leap I am going to be caught, There is no fear, that has been replaced by Faith.

So when this Baroness uses the term ” I am thriving”  in spite of Fibromyalgia (+  two autoimmune diseases) it is to say that I am not just “getting by” I am thriving. I am thriving right on through this life of mine. As is my good friend and sister Thriving T*  We are warriors over our disease, we are the masters of how we process and assimilate what life throws at us.

In our own world [of health] sometimes there is little control over what is happening to the body. That unwinding sense of loss of control over your life can be something that takes a person out. Sadly  it happens. In order to thrive learning there is much you can do about some things concerning your health, there are thousands of choices to be made to that end. Choosing options that allow myself to thrive is my choice, and it has continued to serve me well.

Thriving beautifully on the wings of living well

 

 

©tjhelser2912

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A Better Outlook Looking In

It is important to me that I come this day after a pretty cheeky post about feeling sorry for myself  yesterday and say that all is not lost. Today my outlook about my life when I look inward is back on track. I’m not likely to go down that particular path for some time.

Finding the need to express my many thanks to my blogging family for the most incredible support is sitting on my chest right now like a huge elephant who is reminding how special each of you are to me. The words I read here after posting such a whiny message are stunning. So much love and support baffles me to be honest. I knew going into the post that it was going to be a pity party for one. I had to get it out myself, Like a festering wound if left alone it turns into an infection. I knew that trekking backwards was not an option. I thought about deleting the whole thing though.

I’m grateful today that I did not delete the whole thing, I am grateful today that as much as it pained me emotionally to not participate in the going ons of celebrating my country’s Independence Day I am not in pain physically today. And because of the freedom to write what’s on my mind with no worries of persecution or censorship I realized that I was actually very much celebrating in my own way. Celebrating my own freedom to write from my own person and not be concerned with the outcome is pretty amazing when I think about it today.

So back in my saddle again this Baroness finds herself once again playing the “Glad Game” Being Pollyanna has always been a trait of my own, something that has gotten me through times of chaos that truly have an effect on life. Finding a reason to be glad about something is not too far-fetched from who I am, yesterday was the abnormal for me. I don’t often cry in spilt milk.

This Barfooted and happily contented Baroness wants you to know how much she adores the friendships and loves she has found here. You all are the most astonishing people, and she thanks you from the very bottom of her heart and deepest reaches of her soul.

You’re The Best! I’m most grateful for you being a part of my world. Thank you again Dear friends!

 

~

©tjhelser2012

I Get By With A Little Help From My Friends

What would you do if I sang out of tune,

Would you stand up and walk out on me.

Lend me your ears and I’ll sing you a song,

And I’ll try not to sing out of key.

Oh I get by with a little help from my friends,

Mmm,I get high with a little help from my friends,

Mmm, I’m gonna try with a little help from my friends.

Do you need anybody?

I need somebody to love.

Could it be anybody?

I want somebody to love.

By The Beatles

Note To Readers: Yeah, I struck through the word “high” in the lyrics. It is not so much of a moral statement as it is more of a way for me to note with seriouss and with great respect for anesthesia while appreciating the aspects of being given good drugs and have them monitored safely by a credible doctor or registered nurse when  appropriate.

Yesterday while having the nerves in my neck, C3,4, C 4, 5, “Fried” I was never more grateful for the great gains in anesthesiology than I was during the RAF Ablation I had done yesterday. Help for both:  help with the light sedation that I found was necessary in more ways than I just assumed by what  my own need would be necessary during the procedure, and help with pain reliever which had actually never occurred to me that would be needed dduring the process. But it was. The general local I was given was never going to be enough. Despite the fact that Dr Swift had never had the procedure done himself it became obvious in a number of ways that he was concerned with his patients comfort. This is unusual in my experience. Typically the surgeon has no clue, wants none beyond the logistics of his or her role on the procedure, which I can appreciate. I am grateful that for the assurance that the process no matter what it is they are able to compartmentalize what is happening in front of them. That being said though there is a big difference between the doctors who are also able to be compassionate. I consider it a blessing to have a doctor who can do both.

For the sedation they used Versaid. [sic] The usual medicine used for surgery. It helps us relax, even in terms of receiving a General Anesthesia where the patient is put completely asleep it’s used to help the not remember a thing should they become aware of anything that was going on. It is the medicine most adults over 50 are familiar with, is used for colonoscopy’s.

The registered Nurse who was administering the meds intravenous was extremely conscientious with every step of the way. She was the only one who had told me about the fact that being burned on the skin from the radio-frequency at the procedure sight was a possibility. And that I being fair-skinned especially had a good chance. Its like being sunburned, which I get easily. The trick was going to be to ice it, ice and more ice.

Another aspect of the nurse whose name is Rene is that she was really good about explaining the procedure. I was wondering at the start of her explaining why Dr Swift or someone had not explained before arriving for the procedure. There are some elements that may have freaked me out, I may have gave in knowning about this, and then talked myself out of doing it. Once there and in her hands I felt safe. She explained to me that once the actual burning started that Dr Swift is excellent about staying in touch with the patient and asking how she is feeling. Rene said at any time I needed more of any of the medicines or the numbing agent to say something. DR Swift she said was really good about stopping, waiting for more meds to be administered. That I should not for any reasons hesitate. This information was platinum!

The pain medicine used, which I frankly had not though about needing except for post the procedure is another typical pain medicine used to keep a patient comfortable during a painful procedure if being conscious is the mandate. For an ablation it is necessary the patient be awake so that the doctor may talk with her during the process. I recognized that post the Ablation there may be points where stronger pain medicines might be valuable, the nerves are dying off after all and that cannot feel too good until they are in fact dead. And I have been warned that it can get worse before it does get better because of the nerves dying.

Without the help from these two medications I would never have been able to get through the procedure. Maybe not even the very first instruction given to me. Unlike the two test injections prior to this actual; Ablation they had me lie on my right side. The injections going in the left side of my neck as it is the left side that is being affected. The acual Ablation though required me to lie on my stomach, the actual Burning would need to go through the back of my neck. For anyone who has neck (cervical) issues, who has cervical surgery, and like me who  also has had a cervical fusion where I have a Titanium Plate graphed to my spine lying on my stomach is almost impossible. The positioning of my spine now I suppose because of the plate makes it impossible to bend my neck the small fractions it takes to move it into some sense of comfort. It helped that there was a massage pillow on the gurney table where I was able to put my nose, mouth, and chin. I could not though have been able to hold that pose for no 30 minutes without the pain medications and the sedative which helped relax my muscles.

Hence my above note regarding the lyrics I Get By With A Little Help From My Friends.

My Personal  Sidenote: Cause I just happen to think its so cool.

Speaking of friends and small towns (well somewhere we were) I have to share a sweet piece of private trivia. My nurse Rene was mentioning that she was keeping an eye on the 10 day local forecast. I wondered why and asked,. She said she was getting married in 10 days and it was an outside wedding. I was not surprised, June weddings and all.  I had no real personal interest over her wedding but wished her well and promised to do the sunshine dance for nice weather. My husband had been sitting quietly beside us,  I assumed pretty bored at three women (our daughter #2 was there as well) discussing wedding plans.  Oh Ho Hum….But he perked up and asked her is she would not by any chance be marrying Dr S. My husband D sees Dr S at the same clinic that I see Dr Swift at, and the surgical center I was having the procedure at is connected to. Swift. So, Dr Swift, Dr S and the nurse that stayed with me the entire time all work for the same clinic. And the nurse Rene and Dr S are getting married. What a small world it is. As soon as she knew D is a patient of Dr S it was like we were family. In fact when Rene walked me out tp our car pin being released she hugged me! So cool that we live in such a small town, and sometimes I complain about being small and the medical community being so tied together. I am so happy tp see the good side of that. And I am seeing it more and more if I am jsut patient and wait.

The procedure went really well.We listened to Journey, Steve Perry doing the lead vocals. One of my absolute fave of a bands os all time. But it has to be Steve Perry doing the leads. I was kind of touched that someone in that OR room had remembered a conversation about music we had during one of my test injections. Small town, you gotta love it.I ended up having to have more of the sedation medicine and the numbing agent Lidocaine.administered fairly soon after the first catheter was put in place. I could feel it. True to the word the process stopped as soon as I said something. None of thise, “oh we’re almost there, if you vcan just hand on a lttle longer.” The meds received, the procedure went on. I was good again not neding more meds until the thrd burn. I could feel even the heat of the tip which I now cannot rmember how many degrees he told us. The things we block .The action once again stopped at my rewiest fpr what  dd not know. I did know it hurt and I was not able to handle it. They answer of course was more pain medicine. I am so glad they have done a few times ir so.

I was doing so well after they let me leaving earlier than the norm. The particulars now that are important are taking it easy for a couple of days, icing the area for both interanl inflammation but also for a possible topical burn from the radio-frequency.I am burned a bit not what I expected because I am fair and the site is on the back of my neck under my haor when the light rarely sees.  This is something I would have not known about had my nurse (Rene  who prepped me and stayed with me the entire procedure. All the way to the car as I expained.

I’ll see Dr Swift again in 6 weeks.

I’m feeling really sore, my neck is sensitve. But even though its a different kind f pain its doable with light pain meds. What is really interesting to me is that I feel sun stroked. Its the only thing I can relate it to. The surgical center as habit phones the patient the day after their procedure to check on them. When I was phoned I told her everything different I was feeling, I do have the all the typical reactions, nothing out of the norm although the feeling  have of beng sunstroked. I am hot from the inside out. I know hot. I have an issue already with not being able to control my body temerature that is not hot flashes of typical hormone related. It has to do wuth the Hypo-Thymus. gland she had only heard of it in a patient who also has MS. I do have Fibromyalgia, Connective Tissue Disease, and Giant Cell Response, and wondered if either of those could make the matter, Apparently the Fobro was the tcket. Because its thought (now) to be a central nervous system disorder they suspect that because I am hyper sensitive to such things. I am not surprised, I am hyper sensitive to a lot of things, things that Id never think of and then it pops up. For instance I cannot wear anything with nylon in it. And that tends to be a problem. 100% Cotton is the all over answer. This reaction then is not a surprise and not anything I need to be concerned with. Just hand out in all air condtined room.

I feel like I am doing really well. Sleeping alot which is really cool since I have svere insomnia. I am taking advantage of the sleep I seem to be craving, and listening to my body. It is nice that already I am feeling some improvement in my left shoulder and arm pain wise. And this is just the beginning. I have faith in this procedure for me, that it is going to be my ticket back to normalcy.

I so cannot wait.

Goals in my life…. look out…… Here I come!

©tjhelser2012

{ edited for spelling corrections.}

Wonders Never Cease.

That call came through!

After a good week of pure frustration I heard from the doctor’s office finally late yesterday afternoon. Seems there was a cancellation on the doctors Emergency Room schedule and it was offered to me. I gladly jumped on this offer with both feet before the elusive scheduler could even tell me at what UnGodly hour we would have to be at the surgical center in the morning. It didn’t matter. We were going to be there with bells on. I am at least.

The bells will be only temporary of course; as all jewelry must be removed, sans my wedding ring which I make them tape up every time. It’s been off my finger three times in our 42 years of marriage to date. I am extremely sentimental and believe strongly in symbology; meaning in this case that the ring staying on our fingers represents to me the unbroken circle of our vows. Of our marriage. I was not into taking my rings off any time I chose, willy nill.  I recall seeing aunts and cousins take their rings off for a number of reasons. Sometimes that reasons being out of anger. Seems like arguments were worth removing their rings, or leaving them beside the sink to wash their hands or dishes, often rings ending up down the drain getting knocked in accident. Sometimes not. My rings have come off once on our 20th anniversary when we renewed our vows, we had our rings cleaned and an engraved inside. Then on our 35th anniversary my husband D. took his grandmother’s ring, which she left me, and had the diamond removed from its center stage. My original wedding band was split in two, (I know the engraving is still there albeit altered now) and a third band added to it so there would then be a wide enough base to hold 6 prongs. The third time I have had the ring off was to have a prong fixed that I had somehow bent. I cherish this ring even more. Now because of its added financial value which is huge (now I know what they mean when they say a diamond is girl’s best friend) but the sentimental value is priceless. My band alone which we bought as a matching set back in 1970 held its own unique value, now with D’s grandmother’s diamond (which I never owned before) makes it a family heirloom. That to me makes it the most valuable materialistic thing I own. There is so much love in that small circle that it’s value lies out of this world. 

I digress. I’m sorry.

Obviously some nervous energy shining through the story about my rings.

I am to arrive at the surgical center at 9am this morning Pacific USA time. I am a tad nervous and am feeling grateful that I am set up for  light sedation this time. No arguments from me. The first test injection I thought despite being nervous I’d be tough and not need the offered sedation. By the time they were actually ready to take me back to the OR room I was not doing so well. Despite using mediation and prayer which usually is enough for me I had worked myself up so that even my blood pressure and heart rate were both racing up the scale. Dr Swift popped in again to se how I was doing and talked to me about the sedation. Told me it meant nothing if I needed it. It did not make me less than because I used what was obviously going to help in this situation. I told him it honestly had nothing to do with trying to be tough, not really. Just that if there was no need for more chemicals why automatically accept taking them just because. But in my own anxiety I had lost sight of my own rationale.

I accepted the mediation which after a very short time entered my blood stream. I could immediately feel the warm blanket of its chemical effect and immediately relaxed. I realized then that they had bumped another [patient ahead of me to allow time for the medication to work that it was not just about me. That I was affecting the running of the operation rooms systems. I will not make that mistake again.

Checking in, putting their gown of the latest fashion on, Tied in back please. Thankfully D will be with me to help tie my gown, to hold my hand, to talk with me and side track my focus of attention. I am no way as nervous as I get when I am being given a general anesthesia, being given just a local, light sedation means that post procedure the recovery time required before being allowed to go home with my driver D. They make sure you have a driver, know their name, and make eye contact with them. I was recently in that role for my husband D,  he had his arthritic thumb operated on.  And is doing well thank you.

Shall I just bring my sleeping bag and teddy bear?

The nurses at the surgical center were laughing with us last time we were there,.Teasing me. Between D and I we will have been there at the surgical center 5 times in less than a month’s times, so the nurses were teasing me by laughing and offering us a Family Rate; and why did I not just bring my sleeping bag and stay. Thy all are beginning to feel like friends. I’m not sure what that means.

Ring of Fire.

This morning as I enter the actual cold sterile operation room where will be the two nurses I know now, and an anesthesiologist,  And Dr Swift.  All dressed in matching attire, Dr Swift wearing his rad looking glasses that are magnifying glasses at what strength I have no clue. The music in the background has already been requested. Not by me. But by my Johnny Cash loving doctor. Today the entrance song has been promised to be Ring of Fire by Johnny Cash.

Naturally!

I fell into a burning ring of fire

I went down, down, down and the flames went higher

And it burns, burns, burns, the ring of fire

The ring of fire

~lyrics: Johnny Cash

Gotta love his sense of humour!

Thanks again for all your support everyone. Know that I will use it in medication and prayer. Between the power of both those very meaningful showers of love and the use of chemistry I am going to be better than fine. I am in Good Hands by being in God’s Hands the entire time. This is what I have been needing to have done and from here on out my life that has felt in limbo comes out of that cocoon to life full force again.

I can hardly wait.

~

©tjhelser2012

Still Waiting…..and Waiting….On The Man

For those of you who also follow me on other blog FullCircledMe @ fullcircledme.wordpress.com/ please know that I will be reblogging this same post there. (so if you an alerted twice know it is the same post) I want, and even maybe need to share this on both blogs. Only you followers of both blogs will have the benefit to the post I have initially posted about this at FullCircledMe. I just realized that could be a bit of an issue.  We’ll see, I am always up for an experiment.

I am so not the patient person that I wish sometimes I was. Like today

I am waiting and have been waiting for ALL of my life for a phone call. Okay, not all of my life, but certainly the past say… er… 5 to 6 weeks. And definitely the last 3 weeks I have been waiting. And the call I am waiting for involves a pretty important man in my life right now.

But still I am waiting….and isn’t there a song?

The phone call I am waiting for and that is making me a bit wicked because of its failure to ring is from a surgeon. A neurosurgeon to be exact.

After much hullabaloo to get into see this physician I then went through a two-part series of injections into the cervical nerves affecting my ability to function, and my pain levels that I deal with daily. The two-part test injections were performed, I was given the okay to go ahead by the doctor who agreed to the procedure, and my insurance company. Last week I was told by his medical assistant that my pre-auth had come through, I was just had to wait for his surgical scheduler to phone me. Cool.

If I seem like I am little  too excited to have this procedure done,… you’ve got good instincts. I am impatient and I need to have this done. My life feels like it is limbo right now. But I waited for the Elusive Scheduler to phone.

I am still waiting…

I am waiting to have a Radio-frequency Ablation (RAF) done.

Some of you may be asking yourself what is an RAF and why would she be waiting to have one done.” The what it is in some detail is inserted for your convenience if you are interested towards the bottom of the page. The why I will briefly explain only as I have been living with unacceptable pain again from my spine in the neck for  the last two years. It has also in the past nine months started to affect my range of motion, and ability to function. I have been in Physical & Occupational Therapy for pretty close to a continued time of over one year. The pain is affecting my life to the point where I am unable to find any position to be comfortable in except the pile of different pillows on my bed that allows me to lay against them, and they surround me like a nest. The pillows offer the soft support I need.ave even purchased two pillows from www. My Pillow.com that are the best pillows I have ever had. I purchased one and within one week knew I had to have two. They should be a medical write off but I am not sure yet.

I also have Connective Tissue Disease and Fibromyalgia which creates a hyper sensitivity to almost anything touching skin and my muscles. There days when even the spray of a shower hurts I know that my pain levels and inflammation levels are sky rocketing. I have a lovely shower head that D bought just because it can be adjusted to even almost just a dribble. The setting I that I like is just like a gentle rain which is why he bought it for me, but there are days when even that is just too much.  Like the past week. Our poor cat, Truman has no clue that while he is walking across my body with his sweet little white booted paws he is hurting me with each lingering step. It’s all I can do on some days not to help him along just a little bit. 

Because the pain levels have built to a point where I am needing stronger pain medication, I am not sleeping, unable to do a lot of physical activities because right now it is excruciating painful to have my left arm hanging at my side, and that I also am unable to raise it above my head, are the reasons why I am waiting to have this procedure done. 

In the late 1990’s I had these same symptoms, which led ultimately in 2000 to having a Cervical Fusion Arthoplasty. This that is creating the symptoms that I am dealing with now 12 years later are not from my fusion. I am told it still looks “great”; that the hardware which is made of Titanium is intact and in good shape. For me who had jaw implants that failed in the late 80’s this was extremely reassuring. But I did not expect anything different as this implanted material was researched ad nauseam before the surgery was even agreed upon. By myself.  I was told that my neck is “wearing out” above and below my fusion. This is the least invasive technique that may give me some relief available.

The history behind what got me to where I am at today is on my other blog if you’d like to know more: www.fullcircledme.wordpress.com/

So as the spine in my neck is “wearing out”, “the arthritis is spreading into the thoracic regions; and the thinning inside the bones of the spine which is “cervical stenosis”: are all happily doing their things.

And I am still waiting for HIS phone call.

One phone call. It has been a week since last I heard that “someone will be calling you to schedule a date and time for this procedure.”  Did not happen! No phone call yesterday. Okay I thought it is a holiday.

So at 9:01 AM this morning I was on the phone. I left another message, feeling now that I almost  am having to beg to have this procedure done. Begging while praying all the time that Dr Swift’s support staff in his office start doing some supporting. I have a hard time with patience and tolerance when it comes to a job not being done with some sense of professionalism and with organized consistency. I am not the most patient person right now. I admit it. And usually this is not a big problem with me. I was surprised really when about just an hour and half later my phone call was returned.

Finally!

Another person’s whose name I never have heard before calls. Ellie tells me that they just received the pre-auth this morning.   Really?  was feeling just a bit cheeky now after all this absurdest nonsense just to get an appointment. I responded to her that I find it interesting that apparently one hand is not talking to the other in her office – because I was told the same thing a whole week earlier. She was quiet.  I was ticked.

I would much rather have someone tell me a mistake had been made than to act like I, or they, do not know what ANYONE is talking about. Pretending to be dumb when something goes awry must be being taught to the people in business school these days. While I was calling her out she started to back pedal, finally discovering that to tell me that the pre-auth just showed on her desk sounded plausible she stuck with that.

Yeah, that was the ticket. and in the mean time I tell her that…

I am still here waiting….

I agree with her that is likely what happened, and let the petty argument go. I, after all need these people to at leat not hate me, to not be annoyed with me when I come in for the RAF. I kind of would like the surgeon and his staff to have a favorable attitude towards me. I am thinking this would be a good idea. I can find a way to let  those who are in the know at said clinic  be aware of the circumstances that surrounded this fiasco on another date. For now I need to keep peace. After I have a brief and gentle blow out on Ellie’s dime I hear her tell me that she is going to give The Scheduler, another Elusive Scheduler, a note on her desk to expedite the scheduling process and to get me scheduled as soon as possible. I pray this is so.   I asked her what this meant for me?  This week?  Next week? Another three weeks?

I know….. I know…, rather cheeky. Maybe it was not necessary. I’ll never know.  I explained as best as I could ( without storming out loud to her  all that I was thinking to myself) that it had been an unbearable & unreasonable three weeks out the last two years that the pain and other symptoms like numbing hands and fingers had been going on. That my life is at a standstill it seems because there is so much I am unable to do. I tried as hard as I could to stay assertive and not become tearful. I told her just how frustrated I have been, and trying to get even further along with what I need to share, that if having to wait for another week I will then be at a breaking point and the clinic’s credibility with me is going down hill fast!

All the while….I am still waiting..

I believe Dr Swift has a right to know what has gone on in his office. Such like the issues I had when trying to get my first appointment. How can what they don’t know about get fixed?  I wonder though if this might be a sampling of why Dr Swift is picking up his lily pad and moving to another pond. I’ve heard from everyone I speak to about him that HE IS THE MAN! He is the man worth waiting for. So I am praying for more patience, ..ahem…. maybe I should be saying praying for patience.. any patience would do at this point….

While I am still obviously still waiting!

~

If you are interested in knowing  more:    

Main article: Radio frequency nerve lesioning      [ Resource: Wikipedia.org ]

RFA, or rhizotomy, is sometimes used to treat severe chronic pain in the lower (lumbar) back, cervical, (neck) and upper back, where radio frequency waves are used to produce heat on specifically identified nerves surrounding the facet joints on either side of the lumbar spine. By generating heat around the nerve, its ability to transmit pain signals to the brain is destroyed, thus ablating the nerve. The nerves to be ablated are identified through injections of local anesthesia (such as lidocaine) prior to the RFA procedure. If the local anesthesia injections provide temporary pain relief, then RFA is performed on the nerve(s) that responded well to the injections. RFA is a minimally invasive procedure which can usually be done in day-surgery clinics, where the patient is sent home shortly after completion of the procedure. The patient is awake during the procedure, so risks associated with general anesthesia are avoided. An intravenous line may be inserted so that mild sedatives can be administered. The major drawback for this procedure is that nerves regenerate over time, so the pain relief achieved lasts for only a short duration (6–24 months[12]) in most patients.

Still more information and details can also be found at:

http://en.wikipedia.org/wiki/Radihttp://en.wikipedia.org/wiki/Radiofrequency_ablationofrequency_ablation

Resource:

http://en.wikipedia.org/wiki/Radiofrequency_ablation

©tjhelser 2012

Domain Name For The Baroness

Baroness Ravenna-Nelson-aaron-miller-Barefoot H,

New Domain Name and URL are mine.

The  URL for my new Domain name, which I just purchased is http://wwwbarefootbaroness.org.

After a really intelligent, and I think caring suggestion from my blogging mentor Maxi who you all might know from her blog “Maxi’s Comments.”  I have now purchased a Domain name for myself and my blog.

Maxi is a thoughtful and provocative writer, she’s someone who I, as a woman in her mid 5th decade looks up to. She is far more “hip” to things that I am just learning. Her blog is an eclectic collection of life stories. Hers, and about others she finds worthy of sharing their story. For me I have found a dear friend in Maxi who is in my mind a very classy lady.

Thank you Miss Maxi! Your suggestion again was a viable one for me.

It was Maxi who noticed through a couple private communications that I had a different URL for my blog than that for my blog name. When I registered my blog back in 2008 (and promptly forgot about it) it had never occurred to me that I could and would benefit from having my Blog’s URL be the same as the name as my blog. Or a derivative of my blogs name. In this case I dropped the Lady from my URL that is part of my blogs name.

Feelings that this is one of my best moves I have made for writing online I am beholding to Maxi. I remember when I first finally started publishing posts via WP I was really unsure of myself. I was not sure I wanted anyone I know being able to connect to my blog without my invite. Happening upon or finding it in a search engine. There were very few family and friends who I told about and shared the web site with for many months after first began publishing posts. Strangers reading me really was a unconsious test of sorts. The people I told did not even amount to a handful, and those I told for specific reasons to what I was writing about in most cases. There were two person alone outside my immediate family who I wanted to know about that I was writing on a blog, and how they could find it. One is my twin from different parents, the other my spiritual soul sister. I so wanted and needed these two women to know so much that somehow I thought I had told them at the very start. How really awful and odd I felt when I found out that neither had been told, and I’d been wondering why neither had said a word. With these two ladies I made the silly mistake of each time I would stop and think back, I gave her that URL didn’t I? – I always responded to self with an affirmative. However it was not so, I had assumed wrongly that I had told them, making again a common mistake with people you have a special connection with. Kind of like the mistake we make that our spouse; that they should just know all those things we as their spouse are thinking, need or want without the convenience of us telling them so. I felt really awful when I realized that my best Bud had to find out I went public from mutual acquaintance who I had shared with because I felt that she and her daughter would benefit from my writings about Fibromyalgia & Chronic Pain & Fatigue. Thankfully my Best Bud is a forgiving and unconditional loving Bud.

Search engines will now lead anyone who knows my nickname in my non-cyber life to my Barefoot Baroness Blog. This just makes sense now that I am much more comfortable with just anyone I know and don’t know reading my blog. I am more confident in what I am doing.

I began this as part of a journey and when I began I thought it would be a private journey. How wonderfully surprising to find that the blogging relationships that I have been having the experience of enjoying are  nourishing to my soul. And to find that their input has been having a  positive effect on me is an overwhelming understatement. It’s been quite stunning to me actually, and I am not a newbie to online friendships. I have been an advocate for Chronic Pain & Fatigue for over 25 years. Of about 12 to 13 of those years also included online advocacy using the platform of forums. I built up a few friendships on those forums which today still finds two women I met in a forum and with who I created friendships with are still very much part if my life. We mostly communicate via snail mail today which is especially fun for the paper artist in me.

As I have said a time or two prior to this post that there are several bloggers with which there has been a bond of friendship right from the first few times we read one another’s blogs, and communicated with. I will not bore my readers or embarrass those bloggers again by repeating my adorations and fondness for them. I trust they know who they are by now.

This post just proves that if you give a writer a writing instrument they will write. Kind of like if you bring “them” to water they will drink.

I had no intentions when I started this post to write nothing more than a notice of sorts if you will of my new URL address for this blog. My new Domain name.

FYI:  My other blog: FullCircledMR can still be found at www.fullcircledme.com/

My intentions runneth over with my random thoughts, that is what this blog was designed for.

How wonderful when a plan works out~

©tjhelser 2012

Wow! See what happens when you give a writer a weiting instrument

Six Word Saturday May 12, 2012

Wordle: fibro aware

Today I dedicate my Six Word Saturday to a cause that touches my world deeply. There is a lot to learn, to be learned, and answers  still to be sought out. The best thing we as laypersons can do to help is just keep the conversation going. Keeping the awareness alive and on the fore front of research monies being spent a cure will one day be a reality. Right now we don’t even have a definitive diagnostic test.

For more information and so you too can speak about this disease with some authority please go to:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001463/

Thank you so much for even coming this far!

 

©tjhelser 2012