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The medical information contained in this blog (when it appears) is not intended to provide medical advice of any kind. Any medical topics discussed here are as they pertain to the author and her conditions only. Do not make any changes to your medications, treatments, etc. without speaking to your personal physician first.

Sunday, December 5, 2010

A Very Sad Painful Day

Today was a very stressful day so my pain is up. One of my favorite cats was killed today.

Curled up in the baby doll car seat that Bridgette has for her stuffed Minnie Mouse Doll

On lay-z-boy with Stephanie talking on phone  

playing on the bed when I went to get clean sheets

 The above pictures are of my baby Pharaoh. We have cats. 3 black and white tuxedo cats (Calliou [9yrs], Blackbeard [6yrs] and JJ [5yrs]) whom we call the "black cat mafia" (there used to be 4 of them, but Romeo [JJ's brother] went to live with my daughter Sam in Wisconsin this past August), and one Siamese cat named Pharoah (2 yrs). I think I have the ages correct. We had a second siamese cat (female named Shinya) but she recently went to live with her favorite person (my step-daughter Rachel) in September, leaving us with just the 4 cats.

This morning my brother Brian was woken up by a dog yelping and what he thought was another dog growling etc. He assumed it was two dogs fighting in our side yard. When he looked out the window he saw  a large dog (breed was Akita, apparently a breed known for attacking cats) attacking Pharaoh. Before he could do anything, the dog killed my cat by breaking his neck. Brian woke Stephanie (his wife) and told her, she came and woke up Ron and I to tell us.

I immediately went outside, not caring where the dog was (by that time the police had him in a yard across the street and were keeping an eye on him waiting for animal control to come get him). I was hoping that my cat was okay, just stunned or something, maybe unconscious, but not dead. But no matter how intensely I wished it, he was gone. I've been crying off and on all day. Especially after I found what was on my front steps because the story this evidence told is very clear and it hurts to know that when my baby really needed one of us, needed our help, we weren't there..I wasn't there. I didn't save him when he wanted and needed it. That hurts. I know its not my fault, but emotions are not always logical.

Animal control wanted to take him. They wanted to put him in a bag and "dispose" of him. I was appalled at the idea! No way! I would take care of my baby not some stranger. I lovingly wrapped him up in a soft towel and held him for a while, telling him I was sorry that we weren't awake and didn't help him and that I love him. A couple hours later, with my husband's help, we buried him in the back yard next to the garage. It was so hard and I cried a lot. I've been crying off and on all day because every time I do something I expect Pharaoh to be there like he usually is and it hits me real hard when I look for him and he's not there and I remember this morning.  I want my cat back.

Pharaoh was one of my favorite cats. He really loved me, cared about me and I really loved him too. We got him when a friend of my daughter's joined the navy. He owned two cats, Pharaoh, and an all black female (American short haired) named Isis. His brother took Isis, so I took Pharaoh. He was only about a year old when we got him. Such a pretty, soft, sweet, and lovable cat. When I was stuck in bed due to pain, he would insist on coming into my room and laying on the bed with me. If I was in too much pain for him to lay right up against me or on my lap, he would stretch out and lay next to me without touching me. Or he would curl up around the top of my head, just above my head, on my pillow. Other times he would lay along my chest, with his head resting on my arm. When I was sitting up reading, he would lay on my crossed legs/ankles (I tend to sit with my legs and ankles crossed, Indian style) and put his head on one of my thighs and just go to sleep. He would sit with me on my computer chair too, either curled up on my lap, behind me, or stretched out beside me. When he wanted to be near me but wasn't in the mood for cuddles or petting, he would lay on Ron's side of the bed and sleep.

He was very playful too. He loved to chase this little red laser light we had, it would make a red circle. We'd turn it on and move it around on the floor in circles and he would turn in circles chasing it. We'd move it along the floor and he'd pounce on it, he'd even try to climb the wall after it! He loved it and we would laugh, it was a lot of fun. I would play with him with a long piece of embroidery floss, or a balled up piece of paper, or just my hand under a blanket or towel.

When I would make a sandwich or a bowl of cereal, he would follow me to the kitchen. There he would hop up on to my bar stool (That I use when I'm preparing a meal so I can sit down while working) and watch me carefully. Then he would meow, asking me for some. I would give a piece or two of my sandwich meat. His favorite was roast beef and he did not like pastrami when it was heated up for a hot pastrami sandwich. When I was eating cereal, he would follow me sit and wait until I was done eating because he knew that I would give him a small amount of the milk at the bottom of the bowl (amounted to a tablespoon, the rest I drank). It was so funny! His eyes would never leave the spoon and he'd move his head following the spoon from the bowl to my mouth. A few times I teased him by moving the spoon in circles, or side to side but he kept his eyes glued to it and just followed every movement. It was so funny!

I'm not the only one he would cuddle with, slept with, played with, or begged food from. He would also cuddle with Stephanie (my sister-in-law) and Brian; sometimes even Kyle and he would let Bridgette pet him.  With Stephanie, he would lay with her same as with me, along her chest with his head on her arm or shoulder and his body under the blanket. When she was sitting in the lay-z-boy recliner, he would get into her lap, or lay right beside her and cuddle up, just like in the picture above.

He really was one of our favorite cats and I am really going to miss him very much.


When I started to go back into the house after speaking with the animal control officers (who took the dog) I noticed odd lines on the concrete of my front steps. I looked closer and what I found tore my heart apart. Apparently the dog dragged the cat off the steps. Pharaoh tried to hold on and left claw marks in the cement on the steps as well as the cement that is on top of the little brick wall that is around a flower bed in front of the house, right next to the steps. (the second step actually meets the edge of the wall as can be seen in the first picture). Also on the steps we found two of my baby's claws which were torn off while he tried so hard to hold onto the cement step. I also found paw prints, drag marks, and claw marks dug deeply into the dirt of the flower bed. All I could think of is that my cat came to the door for help and since no one was awake, we weren't there and the damn dog literally dragged him from the porch, over the step and through the flower bed then into the side yard, cornering him where the chain link fence makes a corner. This left my baby with no choice but to turn and try to fight. A fight that woke Brian, but that Pharaoh lost.

Animal control took the dog. It seems that this dog belong to a neighbor on the next street and is a breed that is known to strongly dislike cats and to kill them. This is not the first cat in the neighborhood that this dog has killed, but animal control can't do anything until the dog hurts or kills more than one cat or attacks/harms a human being. I am so angry that the owner was negligent and allowed an aggressive dog to get loose in a neighborhood full of small children and many cats.

I took the pictures of my stairs to show how the animal behaved in getting my cat, should it be needed as I plan to do my best to get this dog either relocated to a farm area, or put down as he is very aggressive. He was aggressive with the police officers and animal control officers as well.

But mostly..I WANT MY CAT BACK!

top of brick wall around flower bed, to left of second step

beginning of claw marks, set of 4 but 4th isn't very visible

left side longer mark a few inches from first set, am guessing front paws

right side claw marks, inches behind first set of 4, am guessing right front paw

The dog looked almost exactly like this

Saturday, November 27, 2010

Made It Through Thanksgiving

Woot! I made it through Thanksgiving!

I am quite pleased that I managed to cook the entire meal. Ron and Stephanie helped me with preparation and such, but I was able to be there for the whole thing. Including Bridgette's assistance in making Eggplant Parmesan for my step-son Nathan. He is a vegetarian and since he doesn't eat meat, he would have no main dish. So I made the eggplant so he would have a vegetarian main dish to eat along with the side dishes. Bridgette's help was real cute.

My camera's battery was dead, so I had to take pictures with Bridgette's Fisher Price camera. So they're not great pictures, but they clearly show her dipping the eggplant into egg then breadcrumbs, ready for baking. She enjoyed it. Her dad helped her while I took some pictures.

Thanksgiving 2010

It was a good day. I was in bed by the time the meal was done, so I didn't get to enjoy the company we had over, but I was still glad that I was able to cook the whole meal.

Today I am already back to normal, with low levels of pain. The radio frequency definitely worked!

Thursday, November 18, 2010


I wrote a couple of poems back in 1997 about what it felt like then to be living with constant chronic pain. I thought back then they were a bit over the top, but after 10 more years of living like this, they aren't. They are very honest and very real and very accurate.

These two poems have not been edited. They are exactly they way they came out of my mind when I felt this overwhelming need to write them. Maybe someday I will edit them, though I do not want to as their errors show the confusion and difficulty with mental tasks that are also inherent with living in pain all the time. Anyway, here they are:

Aug 13, 1997
by Missy H. ©

Every day is the same

each day filled with pain

can't do what I want to
can't do what I need to

I am forced to sit

sit and watch

my life fade away
my children grow apart
it tears at my heart

I wonder why
why does it have to be this way
I try to stay upbeat
to smile through the tears

inside I am dying
my heart cries for release
my mind aches to live again

to be able to walk, to run
everything on hold
as I watch my life go by

sitting, stranded

wrapped within this cloud of pain..

May 1997
by: Missy H. ©

People say God never gives you more than you can bear
I have to wonder, as I sit here
wrapped in pain, my body throbbing
all day and all night
no end in sight

My mind struggles to ignore
Fighting constantly
My body wracked with agony
My heart cries for release
Cursing my weakness, the tears hot on my cheeks
How much more must I take?
What sin have I comitted, to earn such a fate?
The pain never ending
The fear having to yield to my body's shortcomings
The guilt of not meeting my role
I have to wonder, is this too much for one soul?

Struggling To Be Normal

Most people sleep at night, get up at a certain time each day then go about doing their daily activities, be it work, school, play etc. For me, my days and nights are all mixed up. Due to pain I have a difficult time sleeping at night. By the time I manage to do so, it is usually early morning (4 to 6 AM). I may sleep 4 to 6 hours, sometimes less. This goes on for a few days until my body reaches pure exhaustion from lack of sleep and I end up sleeping 12 to 16 hours which means I wake up somewhere around 4PM to 8PM. Now I'm wide awake and there is no way I will sleep at night. This cycle of sleep disturbances can be triggered very easily. One single night awake due to pain, can take me 2 to 3 weeks to get back to sleeping at night. Each additional day/night of inability to sleep or stay asleep only makes it take longer to get back to normal, hence the 2 to 3 weeks.

Right now, I am struggling with trying to get back to sleeping at night since my pain is in good control. I am not doing very well because my body is used to being awake at night (from the weeks spent in bed watching netflix) and only sleeping when exhaustion hits. This means that I have a difficult time sleeping.

I started meditating before bed. Using breathing and visualization to help my body relax and feel sleepy. It helped a bit, but not perfectly. I still didn't sleep until 3 or 4AM, and woke between 10 am and 1 pm. But that at least gave me some daylight hours. Then came the last two nights when I just couldn't sleep until 6AM. (Today was 8AM). Yesterday my alarm clock woke me at 11AM like I had asked it to, and I did not take a nap. I was very tired when I went to bed at 10:30pm. I really thought I would sleep all night. No such luck. I was still awake at 6AM, and then at 7 and 8. Somewhere around 9AM I finally fell asleep. My alarm was set for 12:30 in the hopes it would be just a nap, so I could sleep tonight. No luck, I apparently turned it off in my sleep (when it went off) and did not wake up until 4:30PM. ARRRGGGHHHH!!

This is so frustrating because now I am wide awake and I KNOW that there is no way I will sleep tonight. I've tried forcing myself to stay awake until the next night, but it doesn't work. I end up falling alseep where ever I happen to be sitting (my lay-z-boy, my computer chair etc).  So I end up going to bed trying to take a short nap of 2 to 3 hours. Nope, when someone comes to wake me up I just can not wake up and then I'm out for 8 hours or more and wake up that night or late evening.

I just want to be normal. Like I was before the additional break to my SI joint, back in 2000 through 2003. I want to be awake during the day, sleep at night, and do things. But no such luck, not for me.

Now comes probably being awake tonight and struggling to stay awake all day Friday, so I can maybe sleep Friday night like a normal person. Here's hoping I can do it!

Saturday, November 13, 2010

It has been a while..Radio Frequency Follow Up

I realize it has been a month since my last update and I will explain why. The first radio frequency procedure, which I blogged about on the 13th of October was done after I had already spent 6 weeks in bed. Sadly the insurance companies are who decides who these procedures are doled out. I don't understand it because it seems, in my case at least, that their way of doing it is a waste of money and saves no one any time or money. I've had these procedures 5 times, and they have worked every time (this one included thankfully!). Yet the insurance company insists that I have to have the diagnostics done at two week intervals, followed by the radio frequency procedures (also at two week intervals). Before these can commence I have to return to a condition that requires these procedures. What this means is I have to return to being pretty much unable to function due to pain. Since I live in a part of the country where prescription abuse is pretty high, raising my pain medication during these times is not an option. This leaves me in extreme pain, all day long, for at least 2 months before they will even schedule the diagnostics. After the diagnostics I have to do a follow up with the doctor, who will then schedule the radio frequency. All told this means I was stuck in bed for almost 3 solid months, most of it spent in extreme pain without adequate pain control. All so I could go through hellaciously painful procedures, to control the pain. I get to repeat this process every 8 or 9 months or so because the insurance company demands I allow the radio frequency procedure to wear off completely, to see if my pain is as bad or worse than it was before.

The weeks spent in extreme pain are depressing, debilitating mentally and emotionally, and cause muscle loss due to inactivity, which can also increase the chances of a blood clot and other diseases. This is NOT good. Then comes the multiple appointments of painful procedures that increase the already high level of pain. These procedures cost in the thousands of dollars each time. There is no exception made for patients like me. Meaning patients who have a history of successful radio frequency ablation in their pasts, no new injuries and the same pain caused by the same conditions to just skip the diagnostic steps and save the insurance company 5 thousand dollars per test. (this is the amount listed on my EOB, explanation of benefits) for each diagnostic procedure. The radio frequency itself comes in at around 15 thousand. By demanding these diagnostics every time the insurance company is billed for 40 thousand dollars at the end of each cycle, when they only NEED to be billed for 30 thousand. (Trust me, they don't pay even half of the billed amount!)

Anyway, what happens when I am forced into such extreme levels of pain, and pain increasing procedures is I withdraw. All my mental and emotional energies are focused on making it through each day, and on many days making it through the next hour or even the next 5 minutes. I have no extra energy for anything else. Of course this triggers a depressive episode, which does NOT help the situation at all. End result, I get real quiet. This is why I was not posting here or on my stitching blog. I did manage to keep up with some emails, read a few blog posts from others, but not much more than that. I did do some stitching, but mostly I watched Law and Order on Netflix with my son's laptop and just withdrew from everything.

This time, after the radio frequency was done the Dr. decided to do toradol injections in the SI joints. I wasn't expecting it to help much. I was hoping to do radio frequency on both joints, but he preferred these injections. They use toradol on me as I can no longer do the steroid injections. Surprisingly this has brought decent results. So far they have only done the left side, but it has made it possible for me to get back to cooking dinner, doing some housework and laundry. My pain is A LOT lower than it was and I am out of bed.

However, coming out of that shell that I retreat into is more difficult. It becomes a matter of forcing myself to do things, whether I want to or not. Eventually the excitement and happiness of being able to do those things without paying for it with extreme pain, makes me realize that I am, once again, back to myself. Oh not the self I was years ago, but the self I was a few months ago. That realization and those wonderful feelings make it possible for me to continue to do things without as much mental effort of forcing myself.

But I have noticed that this gets harder every time I have to go through it. I am tired of having to return to a place of severe suffering every single day, just to satisfy some stupid insurance "rule" that really doesn't make sense in my case. I'm tired of having to live with extreme levels of pain, all day long, because I live in an area where prescription drug abuse is higher than in other areas. I have proven, over years and years, that I do NOT abuse my medication. That I am no addicted to it. Yet no exception can be made in order to try and control my pain better during those months that the insurance company demands I suffer through before they will allow the cycle of procedures to start up. I have a lot of anger over this and it is difficult to let this anger go because I am not the only one who suffers. My entire family suffers right along with me. They don't get the attention they usually do. And let me tell you a 3 year old child does NOT understand that pain is what is preventing her aunt from playing with her the way she usually does. To a 3 year old, I'm just ignoring her. My husband doesn't get the cuddling, discussions, support, etc. that he would normally get because I just don't have any extra energy to give to him. Same for my son, who also suffers in his school work because I can't sit at the table and teach him. Instead he is stuck pretty much learning on his own. My sister-in-law is stuck doing all the cooking, laundry and housework that is generated in a household of 6 people and 4 cats.

I resent that my family members have to go through this. I struggle with guilt, shame, fear, and anger..all of which combine into depression. Thoughts that if I weren't so "broken" I could be a better Mom, Wife, Aunt and Teacher. I struggle with fears that they will get tired of this and leave me. It gets harder every time I have to go through this to recover from the emotional and mental aspects, as well as the physical.

But I am still around and I am still fighting. Right now I am focusing on getting back to where I was 5 months ago. Here's hoping I can do it.

Wednesday, October 13, 2010

Radio Frequency Procedure

Warning: Graphic Image and Specific Language about a medical procedure. If you are upset or bothered by reading about or seeing a picture of said medical procedures being done! then please do not view this post.

For those who may not understand what radio frequency procedures are, I asked for a picture from the flouroscopy (almost like an x-ray) view so that I could scan it in and explain about how it is done and why it sends me to bed for a couple days after it is done, as well as why it helps so much making me willing to keep repeating such a hellaciously painful procedure. As well as to discuss it and other topics with my son.

I will be referring to this picture:

You may need to click the picture to view it full size and read the labels.

You can easily see the main part of the 6 inch screw that lays horizontally through my left sacroiliac joint. It starts near the hip (I can actually feel the screw head under my skin if I press the right area) and goes through the entire illeum, across the broken joint and ends about halfway through my sacrum. This screw was supposed to hold both sides of the SI joint together while it fused to solid bone. It did not fuse so the screw now acts to stabilizing my sacrum so it can't move as far as it is capable of. The area underneath the ridges of this screw is my sacrum itself.

In the lower left area of the picture it gets pretty dark. This is because the surgical steel plate and screws cast a shadow on flouroscopy (they do the same on x-ray and cat-scan). The plate can be seen though, along with the screws that go back to front holding the plate in place.

For background knowledge, the plate and all the screws are loose. (so not only am I permanently screwed, all my screws are loose too! ROFLMAO) There are visible spaces around the threads and length of all the screws on cat-scan review. It is these spaces that have allowed the affected bones to be mobile again. When I walk they grind together and you can sometimes hear them pop, crack, or snap very loudly. Also, the second attempted fusion resulted in pseudoarthrosis which is a thin bone covering over an attempted fusion. An uncommon side effect that results instead of a complete solid fusion that would have removed the SI joint and left the illeum and sacrum connected as one solid bone. This thin covering makes it appear the fusion is solid on an x-ray, but the spaces of the original joint are still visible on cat scan {as cat-scan takes slices, that can see behind the bone covering}. When this covering broke, and a subsequent fall was endured (which caused further fracturing of the bones), the end results is a permanent compound fracture of the left SI joint and bone fragments are floating around. It is the plate and screws that make it possible for me to continue to walk, but since they are loose the bare bones do grind together and new bone fragments can be chipped off if I were to further injure the area through falling or a car accident or something. frequency step by step.
I am brought into the flouroscopy room at my local outpatient surgical center. I am laid face down on the table and prepped. A grounding pad is placed on my right thigh when they do the left side. (everything is the opposite when they do the right side) Iodine is wiped over the area to be treated and sterile drapes are placed over my body with the opening in the cloth showing the lower back and pelic area on the left.

I had an IV for the first time this was done, with mild sedation using versed. In some people versed makes them very emotional. That is the reaction I had. When I started crying from the pain, I could not control it or stop even when the procedure was over, and instead of just crying for a moment or two I was sobbing (I hate crying from pain btw). This caused a nurse (who was later let go) to insult me and call me names. As a result the next 3 times I went through this procedure I did it without an IV or even mild drugs as that nurse (who was still there for the next 2 out of 3) told me only Versed could be used (Which was wrong by the way). However the last time I had this done (Aug. 2009) the nurse assigned to me asked me why I did not want an IV and medication. I told her how versed affected me and that I was told it was the only medication they could use, so I chose to suffer through it rather than be humiliated. She was the one who told me that versed can do that to people and that they can use a different drug instead. She told me to give it a try with the different drug and see if that helped at all. It did. The procedure still hurt like hell but it was not as bad as it is when I am not medicated. So this time I was again given an IV and a low dose of medication right before the procedure started.

For the first part of the procedure only my skin can be lightly numbed. The doctor then proceeds to place each needle with the assistance of the flouroscopy. This is to help ensure proper placement of the needles, and to ensure they are not going into areas known to carry nerve roots for a mobility nerve (sciatic nerve and its roots which are present at all lower lumbar disc levels).

The needles for L4-5 and L5-S1 hurt the most because it is those areas that have a degenerated disc and a herniated one (in that order). There are areas of scar tissue and bone fragments which make it difficult to just slip the needle in. This is further complicated by the presence of the surgical steel screw. One needle goes above the screw, but the other one has to go underneath the screw. This takes some maneuvering on the Dr's part. While these needles were being placed all I can do is cry and try to breathe through the very sharp pains that are shooting across my entire lower back and pelvis. It hurts a great deal.

Once all the needles are placed, they must test each one. This means they send the waves through the needles, one at a time. This stimulates the areas and thus exacerbating my pain. This is the part that gives the reason for not numbing the entire area first and the reason I must be awake for these procedures. As each needle is tested, it is my job to feel the waves and where they cause pain. If I can't feel the waves, they adjust them until I can. In addition to that I must be able to tell them if I get any sciatica type symptoms. This means any numbness, tingling, sharp pulling sensations, or sharp pains going down my leg. If those symptoms are there, the needle must be withdrawn and replaced because those symptoms mean the waves are hitting the sciatic nerves.

Once all the needles are in the correct places and tested, they numb me. But it is not completely numb. I can still feel the waves as each needle is activated, run for a little while, then move on to the next one. The only difference is it is nowhere as intense and sharp a pain as I feel during the testing section. Part of the reason is that I am numb, but because the waves are now at the correct frequency (thus stronger) I can still feel it. Again, L4-5 and L5-S1 are the worst. Once the proper time has passed for each level, the needles are removed and a dressing is placed. I am moved back onto a gourney and into the recovery area. This is where I am watched for about 20 to 30 minutes, then sent home.

Radio frequency procedures damage the nerves around a painful area, thus preventing them from sending pain signals to the brain and lowering how much pain the patient feels. I call them middle nerves because I can never remember their proper names LOL. These are not the surface nerves that allow you to feel sensation through your skin. Nor are they the nerves that lay near your bones and handle movement, bladder and bowel control etc. (Sciatic nerve in lower back and pelvis). The nerves being deliberately damaged lay in between those two areas (surface/skin and mobility nerves near bones) hence I call them the middle nerves and usually explain them to people as the filling inside a sandwich. This scarring interrupts the pain signals that, in a chronic pain patient like me, are constantly being sent to the brain.

The longer a person is in pain, the better their nerves and brain get at feeling that pain. (I guess practice makes perfect is just as apt for the human body) The nerves become overly sensitive and send pain signals to the brain constantly. The brain gets better at reacting to the pain signals received from those areas because the more often it works, the better the brain gets at noticing it. In a chronic pain person what this means is that they will feel pain constantly, and even minor fluctuations in that pain are perceived as more intense by the brain. This can also distract the brain from noticing minor pain relayed from different areas. This is part of the reason I do not always feel the muscle aches that accompany doing too much right away. Instead I only feel those after I have stopped doing whatever it was, sit down and relax for a while. It is while I relax that my brain starts noticing the signals from other areas, as well as from the injured ones. This is why I clean house in 10 to 15 minute bursts, alternating with sitting down for 10 to 15 minutes. It is those resting minutes that allow me to guage my pain level and realize that I am reaching my limit and must stop even if I am not done.

The scarring/burning of the nerves lasts for quite some time. I get about 9 to 10 months of lower pain levels out of it. Some patients can get up to 2 years from this procedure and apparently a few lucky people get permanent results. But for the majority of patients these nerves do regenerate and when they do the original levels of pain return. For some it happens quickly, for others it happens over a period of time. I am one of the latter people.

Side effects vary but for about 2 weeks after the procedure I experience odd sensations, which are signals the damaged nerves are sending out. I get pins and needles sensation throughout the affected area, these little zinging shoothing pains that shoot every which way a few times an hour, a burning or heated sensation in the treated area, or a sensation of tingling as if I had a tens unit on. These sensations start out frequent for me and lessen over time, usually stopping within 2 weeks. They can be greatly alleviated through the use of medications such as Lyrica or Neurontin during those two weeks.

This is what was done to me on Monday the 11th. It will be repeated on the right side on the 25th. In addition I will be scheduled to have the procedure repeated two more times, this time to the sacroiliac joints themselves, which I erroneously thought was already being done and it wasn't. I'm not looking forward to the procedure on the left SI joint, which is the broken one, because I am expecting it to hurt even more than the left side of my lower back does. I am expecting that because it is the part of my body that causes the most severe pain. But I will get it done because I know how much relief these procedures do give me, and by adding the SI joints it is possible that I will be able to lower my pain medication for the first time in the many years I've been stuck having to take such medication on a daily basis. Ohhhhh I am really hoping and praying that this will be possible!! It is also possible that with the pain of my lower back and pelvis under much better control, that I will be able to do a lot more physically and thus rebuild some of the muscle tone I have lost due to immobility. (and maybe lose a few pounds too!)

I originally had the picture printed out to show to my son and give him a little science lesson on nerve conduction, bone structure, and the issues facing a chronic pain patient such as dependency, tolerance and the differences between those two things and addiction. There is a lot of emphasis being placed on prescription drug abuse. As I have stated in older posts, these political views even showed up in his science text book for the 6th grade. The book flat out stated that anyone who takes pain medication on a daily basis is an addict, that there are no medical conditions that cause chronic pain. With those messages coming from so many different sources (friends, family members of his friends, teachers, school books, television, newspapers and radio) I was expecting him to eventually have doubts and start wondering if I was an addict or not. So I took the opportunity of homeschooling and the time to explain these things in detail to him.

So we spent some time discussing tolerance, dependency and addiction and the differences between them. We spent some time going over the behaviors that are present with an addict and how they differ from a non-addicted chronic pain patient. The biggest one being: no addict would put themselves through the hell of such painful procedures as radio frequency, steroid injections or more because their goal is not pain control, it is to get high. Whereas a chronic pain patient will attempt those procedures (and repeat them if they work) because their goal is pain control, not to get high. I didn't even have to point that out to him, he got it on his own. He understood that I continue to suffer through these procedures because they help me and they make it possible for me to deal with my pain without having to increase my medication every year or so. (I took the same dose for 6 years before the pain got so bad that I had no choice to but to increase my medication, even with the injections and RF.

So that is how radio frequency is done on me. For more information about this procedure here are some links:

I do feel lower pain in the treated area, but since it is only 1 area out of 4 it isn't enough to affect my ability to move around or to be out of bed for more than a couple hours at a time. Still it is nice to have a lower pain level in that area and I am looking forward to how it will feel when all 4 sections have been done.

For now I am still stuck mostly in bed because it is the most comfortable place for me to sit, and still stuck with pain levels at a 7 or 8 on a daily basis. This high level makes it a lot easier for me to hit a pain crisis simply by doing normal every day things. So for now I am still having to take it extremely easy with small windows of freedom (freedom meaning I can sit at the dinner table for an hour or half an hour, or sit in my recliner and watch tv for an hour or so, or take a shower without my shower buddy [read hubby] and more.

I hope this long rambling disjointed explanation of radio frequency helps you understand things a bit better. If you hung in and read it all, thank you!

Sunday, September 26, 2010

Doing the Bed Dance Again..(sung to Timewarp from Rocky Horror)

Well here I am stuck in bed this weekend. My back is hurting more today than yesterday thanks to the rain today. I ended up in bed due to my pain level being too high all week and a pain crisis Thursday when the broken bones popped and grabbed the sciatic nerve. I really hate being stuck in bed. Though since I have Kyle's laptop I can at least do blogs and stuff, which helps.

Bridgette is really upset that I am in bed. She hates it when I am stuck in bed because I can't play with her. She will stand outside my door and scream for me.

Starting tomorrow I undergo the diagnostics for radio frequency. I hate having to do the diagnostics every time, but apparently the insurance companies now demand it. So tomorrow afternoon I get 6 or 8 needles in my back, to numb the nerves and see if it helps my pain. If it does they'll do the other side next week. Then over 2 weeks in October they'll do radio frequency on both sides including the SI. It is a painful procedure but once it is past the 2 week point it really does help control my pain. Sadly not enough that I can come off the medication, but enough that I can do more around the house, like cook dinner without ending up in bed. Now that I have to sit at the dining room table to teach Kyle and Stephanie, I need something to lower my pain so I can sit there without hurting myself too much.

Kyle had a rough week with school work this week. He was real slow, just didn't want to do it. He gave me a real hard time Thursday, which is what led to the pain crisis and a weekend stuck in bed. He did much better on Friday after driving me to bed, but by then it was too little too late. Hopefully he now understands that his farting around with schoolwork (ex. 20 math questions takes 4 hours) does hurt me and he'll stop doing it so much. He was so good for a while. I think my mistake was giving him his September game early. I won't make that mistake again. And yes I took the game away.

Monday, September 13, 2010

Invisible Illness Week

It is Invisible Illness Week. I was so hoping I wouldn't miss it this year and I didn't! YAY!
This week is to help educate people about illnesses that are not visible to the eye, like Chronic Pain. Though, I do not believe that chronic pain is completely invisible because there are signs which are very visible if a person bothers to look for them. I wrote an essay/post about that a while back and you can view it here.

Monday, August 30, 2010

First couple weeks of school, rain, and pain

Well the first two full weeks of homeschooling have passed. So far so good! Kyle has gotten a lot of work done, and I have a pretty good schedule set for his work. The hardest part is finding a balance between "enough work" and "too much work". That always takes a bit of rearranging until I find what works best for us both. He is learning a lot so far this year and surprisingly he is enjoying it! Unlike last year there have been almost no arguments, which is a major relief. I have been sitting with him and we do a lot of talking about the different subjects, specially history and science. He really enjoys those conversations and so far he is even learning to think about it and make some pretty good comments when I ask him to compare something from the history book to something that is going on in current times.

I have also found that I am enjoying these conversations with him and the time spent with him every day. Homeschooling him does put a lot of work on my shoulders, but so far this year I am enjoying it. However, sitting at the kitchen table, even with a cushion on the seat, is very painful. My pain has been up as a result. Add to that the rain that we've been getting almost daily for the last week or so and my pain is pretty high. As a result today had to be a short day. He did spelling, cursive, and took his math test (he got a 70, which is better than I expected. most of his errors were caused by not paying attention, simple basic math errors). After the test I just couldn't sit in the chair any longer, so gave him the rest of the day off. We could sit in my bedroom, but he gets drowsy sitting in the bed. It is difficult to teach someone who is falling asleep LOL We will figure something out I am sure.

That's pretty much it for me. I am trying to catch up on blog reading. I have 743 posts that I need to read, which is better than the 900+ I started the day off with. So I better get back to it!

Friday, August 27, 2010

Damn Rain

Rain rain go away..come again another day!

We've had thunderstorms off and on for the past 3 days. This, of course, has caused my pain to rise considerably. Which, as a result of the increased level of pain, causes me to not be able to sleep. Last night I got 2 hours of sleep, but had 3 hours between each of those 2 hours. We've had a heavy downpour this morning with thunder and lightning. Here it is 12:11 PM (central US time) and it is still raining (not as heavily though) and the sky is fully overcast, so it will probably rain off and on all day. Ohman that stinks!

Both sides of my pelvis are just throbbing and screaming. My lower back feels like there is a hot rock in it making the muscles all very very tight, lots of pain and sciatica symptoms.

My son has finished his school work for the day, so I'm going to go to bed and try to sleep. Good night all!

Tuesday, August 17, 2010

Sometimes it is nice to be wrong

I don't usually like to be wrong, but then not many people do like being wrong. LOL

However, in this case I am quite happy to have been wrong. I am not alone and the person I had been relying upon did not really believe that I was faking my back. I misunderstood what was said, and one of the things was said the wrong way ( which woke the fear). I have this fear because I have been replaced by my ex-husband as a direct result of my back. In fact, when he told me he chose his girlfriend over me he said it was because she wasn't broken like I am. I've gotten much better about it, but it is a still a sore spot.

Thank you for your support, I really do appreciate it. specially when I am being an idiot... :)

I am so glad to have been wrong though!

Thursday, August 12, 2010

Losing Support

One of the most important things a chronic pain patient needs is someone who believes them that they are in pain. Someone who emotionally supports them, and is there for them. Having someone like that is invaluable. It keeps the person from feeling alone, like the entire world is against them.

There is nothing more devastating to a chronic pain patient then finding out the person they have been relying upon for support as well as strength and courage to keep fighting day after day, really doesn't believe them about their condition. That all the supposed support has been a lie, an act.

I really am alone.

Wednesday, August 11, 2010

Try Try Try

If at first you don't succeed...try...try again.

That's a good saying for situations where a person is trying something new, or starting a new job or school or many other situations.

What happens though when that becomes your very life? When it becomes the way you have to handle every day little things that other people take for granted? Things like getting some sleep, using the bathroom, taking a shower, fixing a meal, washing clothes, running to the store for milk and every other little thing. How long can one just keep trying all the time while watching others do things so easily, without thought and hearing from people who should know better (doctors, therapists, friends, and family) that they just aren't trying hard enough? Where do they get the strength to just keep going with little or no support and understanding?

The answer is different for every person in a similar situation. For some it is pure stubbornness, for others it is anger at their mistreatment, for some it is a combination of both, and for others it is the belief that suicide is a sin and will send them to hell, leaving them no choice but to muddle through somehow. For some it is the love of their family and friends that gives them what they need to go on. The reasons for going on, day after day, when everything is a struggle, vary from person and person. Whatever those reasons are it is a good thing to remind yourself of them from time to time, specially when things hit a rough spot.

For me, it is a combination of reasons why I continue to struggle through every day. I am stubborn and don't like to lose, if I give up then I have lost to my conditions. This does not mean that I do not give in to it when I have to (bed days, taking things carefully and within my limits), it just means that I refuse to let my conditions take over my life completely. When I feel angry at my condition, I try to channel that anger into a more productive way be it housecleaning, writing, stitching, or something else. I try not to let that anger take over, instead I try to vent it in a positive manner. The same goes for guilt. There is a lot of guilt with a chronic condition, specially as a parent.

For me it comes down to this, I don't really have a choice. If I want to live some kind of life and not be stuck in a padded room or dead, then I have to keep trying. There is no other option. So I keep trying. It is not easy.

Tomorrow starts the first day of school. I homeschool my son and this will probably be the last year I do so. I am nervous because I know that my conditions have affected the homeschool process before. He learned a lot last year, don't get me wrong. I believe he learned more than enough to pass the 7th grade, and I will be having his work reviewed which I have to do by law. I am hoping to catch him back up to the grade he should be in due to his age, which would be 9th grade this year. I'm hoping by the end of this school year he will test at 10th grade level for the 2011-2012 school year and start High School back in the 10th grade where he should be. It was the school system that decided all the work he did at home for 6th grade did not count and made him repeat the year.Granted I agree he did not do enough for the whole school year. I think he did half a school year, and that was always enough to promote my other kids in this school system, but not for my son. Anyway, I have his work set up for the rest of the week and am hoping it works out well. I am nervous though and hoping he doesn't give me the same arguments he gave me last year over doing the work. The hardest part is finding a way to make it interesting. Here is hoping I can do so!

As if chronic pain is not bad enough I can now add Hypothyroidism to my list of problems. I knew it was starting a few years back when my blood test came back off. The chemical my brain was putting out to tell my thyroid how much to make, was three times normal levels, yet my thyroid T-4 (I think it is) was just barely over the low end of normal. They chose not to medicate it at the time. It started to work for a while, then stop for a while. I could always tell when it had entered the "not working well" phase because my skin would dry out real bad and my hair would fall out. Over the past year I have put on weight (that I can't lose), my hair has been falling out pretty heavily (I now have 1/4 of the hair I had 2 years ago), my skin has gotten real dry and many other symptoms. So the doctor redid the blood tests and now the levels were low enough to start medicating it. I started Levothyroxine (synthroid) 125mcg a couple weeks ago. Here is hoping it works.

Thursday, August 5, 2010

Choosing Not To Work...Excuse me?!?

Someone said to me that they find it very unfair that people who "choose not to work, like you did, get services when people who need them can't get them because they have a job". I have not responded to this email yet because I am angry and very hurt by this. The only services I receive is social security and it is nowhere near enough for me to live on my own.

I did not CHOOSE not to work, injury chose me. At the time my back first blew out, I was working full-time and had just been accepted to pharmacy school to become a pharmacist. I was so excited because I wanted to be a pharmacist so badly and I loved my job so much. I did not choose to have a disc in my lower back herniate and press on the sciatic nerve root at L4-5. Nor did I choose to have a crappy doctor refuse to test for a herniated disc (or anything else for that matter) and force me into an exercise machine that caused the disc to first rupture (easy way to explain that is: it exploded) embedding pieces of it in the sciatic nerve root, then herniate again hiding the rupture.At the time I was on an HMO and needed approval to change doctors, and my insurance company refused to let me change doctors, leaving me with no choice but to deal with that crappy doctor who caused more damage to my back.

I don't know anyone who would choose to have permanent nerve damage to their lower back, complicated by an additional herniated disk (L5-S1) and the permanent compound fracture of my left sacroiliac joint. I guess you could say I chose the damage to my pelvis because I chose to have children. Since I chose to have children, and it was having those children that damaged my pelvis so badly, an argument can be made that I chose that particular injury. But saying I had a choice implies that I KNEW the injury was possible (or in my case, probable) when I had no idea that such injuries could occur. I love my children more than anything, but I can say this much I would not have chosen to have them if I had known that doing so would cause so much damage to my body. Not because of the pain and mobility issues, but because of how those same children have suffered as a result of having a disabled mother. I would rather not have them have to live the way they have, watching me suffer and not getting the same physical things other kids get. I see other parents taking their kids to ball games, the zoo, running around with them, or riding bikes and I feel guilty because I can't do those things with my kids. It seems unfair to me that my children got a mother who can't play tag with them, or chase after them to teach them to ride a bike, or play ball with them in the back yard. My children love me, and I love them, but I also know they have had to deal with disappointments because of my back and pelvis that are not fair to them.

OK I'm down to wanting to curse and I'll stop.

Friday, July 16, 2010

Pain, Stress and Hope

I've been doing a lot of reading about my diagnosis. What I have been finding is not very encouraging though. A benign Phyllodes Tumor (aka philloides tumor), when it recurs, is usually malignant. There is a study going on in New Hampshire that is showing radiation to have some positive effect on these tumors, so there are treatment options. However the best treatment still appears to be complete surgical removal, preferably with a clear margin of healthy tissue. Everything I have read agrees that even a benign phyllodes counts as a positive cancer diagnosis. So now I am doing daily breast self exams because I want to catch any new growth as quickly as possible.

I have an appointment to see an oncologist on August 4th, one who was trained at the M.D. Anderson hospital in Houston TX. Since I had already been recommended for a prophylactic mastectomy but couldn't find a surgeon willing to do it. I want to see what the oncologist has to say. My hope is that he will agree a mastectomy is necessary now that I have a cancer diagnosis and he will know a surgeon willing to do the surgery. Removal of the breasts is my best chance at not growing another tumor, this one malignant.

My primary care doctor is putting in prior approval paperwork for the genetic test (BRCA I and II genes), but test results still takes 6 to 8 weeks or longer. I am hoping that if the oncologist agrees we can get the mastectomy done before that. Though I seriously doubt it will happen.

Dr. Idiot, the surgeon who did the lumpectomy, told me that if I had cancer he would do a mastectomy. Despite phyllodes tumors counting as a cancer diagnosis, he still won't do the surgery. He still wants the damn genetic test. This just ticks me off. With my family history and now this tumor, it should be enough for him to believe that a mastectomy is the right choice.

My back still isn't back to normal since the surgery last week. My lower back still has much higher pain than it usually does and the SI joint is also very unhappy. I will probably spend today in bed again trying to get both back to my normal by resting them completely. There really isn't anything else I can do.

Ron has been truly wonderful through all of this. He has stood by me every step of the way. He also spent the afternoon and evening reading about these tumors after we got the diagnosis. Like me, he wanted to know everything he could about them and what treatments, if any, would be best for it. He is behind me on wanting the mastectomy. I have been so grateful for his love and support through all this. It is wonderful to have a partner who believes in and will love up to the vows he took when we got married.

Ron, thank you for everything! I love you!

Tuesday, July 13, 2010

Biopsy Results

The biopsy results are a good and bad kind of thing.

Good news first: BENIGN (not cancer yet) 

I do not have cancer yet, but it was a tumor called Phyllodes Tumor. This is a rare tumor (counts for less than 1% of all breast cancer diagnosis). It is a connective tissue tumor rather than the more common ductal or lobal tumors. It is very aggressive (it grew 3cm in 9 days..2.4 at ultrasound..5.4 when removed 9 days or so later, it weighed 25grams), does not respond well to chemo or radiation. It counts as a positive breast cancer diagnosis even if the tumor is benign at the time it is found. Unlike other breast cancers it is not classed by stages (example stage 1-4), it is classified as benign, borderline, or malignant (cancer) based on the number of irregularly shaped cells in the tumor and how fast cell division is occurring.

I am glad that I insisted on a full lumpectomy for this biopsy because these tumors ALWAYS give a false negative (remember Dr Idiot said false negatives never happen?!?! IDIOT) on a needle biopsy, in fact they usually come back with a misdiagnosis of fibroadenoma (very benign type growth). Had I followed the surgeon's idea of a needle biopsy, I would have been misdiagnosed. They are also very hard to diagnose by mammogram, ultrasound and MRI due to the fact that they look very similar to fibroadenoma. Though an MRI can give the best view of the tumor and thus be helpful in planning surgical removal. Surgical removal is the usual choice for treatment of these tumors, sometimes requiring full mastectomy.

Next step will be genetic test (Dr. Idiot said if I come up with one of the genes, he will do the mastectomy I asked for) and bilateral mastectomy as this is the best way to prevent a new tumor (which will be cancerous) from growing (the less breast tissue I have, the lower my chances of growing a second tumor (this one cancerous) of this type.

You can find out more here:""

Due to the type of tumor I will be seeing a couple different surgeons in the hopes that one of them will do the mastectomy without the genetic test, though I plan on getting blood drawn for the test in case all the surgeons I see demand the test.

Leave it to me to get a rare type of tumor that is difficult to treat and difficult to diagnose.

Monday, July 12, 2010

Scared, Antsy, and No Sleep

It is 8:17AM here (US Central Time) and I have been awake all night. I tried to sleep a few different times but I kept dreaming about the idiot surgeon telling me I had cancer. I understand why that is showing up in my dreams. Today (this morning in fact) is the day I get the biopsy results from the surgeon. Despite trying not to get my hopes up too high for a benign result, I know my hopes are sky high and if the results are malignant I am going to be crushed. I slept a total of less than1 hour (20 minutes, separated by 4 hours in between).

I've been through a lot in my life. Neglect, emotional and physical abuse as a child and an adult, sexual abuse, rape, bouts of severe depression, injuries to my back resulting in severe chronic pain. I should be able to handle this without feeling like I am coming unglued shouldn't I? I am trying so hard to keep it together and not lose it, mostly for my son's sake. He doesn't read this blog so I can vent it all here. Though my daughter does read it and I don't want to upset her either. But she understands about venting a lot better than he does as she is older and has her venting moments too. People expect me to be strong, to keep it together and not lose it, but I think on this issue I'm going to and I pray they understand.

I am so flipping scared! I just want to find a small, dark place, crawl inside, curl up and hide. I don't want to face this. I want to forget it ever happened and ignore it. I'm sitting here typing and watching my husband stand up, pace a bit, sit back down and try to concentrate on his game only to stand up and pace a bit. He's been doing that for the last 15 minutes. I can see his worry and fear in his eyes. But I can also see his love for me and his determination to be there for me every step of the way, no matter what the diagnosis is and that just amazes me. I am counting on it too. I know him. He will keep his word. He has been here for me every moment of the past 13 years (since we've known each other), even when we did not live together if I needed him, he was just a phone call away. If I needed him to be there, he would get in his car and come to me (an 8 hour drive I think it was). It is a lot nicer to have him right here in the same house as me and boy do I need him this time.

I cried last night. I tried watching a movie to distract myself. I did pretty good distracting myself most of the day, but as the house quieted down (a friend went home and Bridgette went to bed) I had a harder time of it. So I put in a movie we got from Netflix called "Lovely Bones". It is based on a book that I really loved. However, last night was not a good night to watch such a sad and emotional movie. I made it through the first 25 minutes or so then started bawling. I turned the movie off, went into the bathroom and cried. I pulled myself together and decided to go to bed and read. Ron (DH) said he could see by the way I sat on the bed for a minute before laying down that something was wrong so came over and hugged me. As soon as his arms went around me I just started crying. I couldn't help it, but it is ok because I know he doesn't see my crying as a weakness or an attempt to manipulate him. I do not cry very easily but I did last night. In Ron's arms I am safe and it is safe for me to let go because he will hold me up and be there for me in those vulnerable times. I can't begin to tell you how wonderful that is and how great it feels to know beyond a shadow of a doubt that he will not harm me in any way for having times when I need to cry.

I know I am rambling but this is all I want to do right now, just ramble and vent while I wait for the time to go to the doctor's office. My appointment is at 9AM, the office is less than 5 minutes from my house, and it is now 8:35AM. My mind is whirring, my heart is pounding, and I can't concentrate to read or stitch or anything so I'm doing what I used to do when I had such emotional worrisome moments before; write it all out.

I know this is going to sound stupid but part of me wants to hear the doctor say it is malignant, just so I can look him in the face and tell him he is an idiot and that I hope he learned something from this. That I hope he learned that not all his patients are unintelligent idiots, and that he should LISTEN to his patients more often. I also want to tell him that he needs to go back to medical school and retake the courses where they cover cancer, specifically breast cancer because the information he is giving his patients (the information he gave me) is WRONG WRONG WRONG!

I wish this was over. The only other times I have felt this worried, this scared, vulnerable, tiny, terrified etc etc were when I was giving birth to my children and those occasions when my children had to go into the hospital for one reason or another. The times I had to be on suicide watch for my daughter, hide all the sharp items in the house where she couldn't get to them, a constant litany of "please God help her. Please God Please God Please God" running through my head. The time my son had pneumonia (both lungs) and an asthma attack, his oxygen saturation in his blood was in the 70s, as soon as they got that reading the nurse ripped him out of my arms and literally took off running with him into the actual ER treatment rooms (we had been in the triage/check-in area). For a second I was stunned and could only watch as this woman took off with my baby (he was a year or so old) before it dawned on me that I need to follow her and I took off after her. The same litany of please god please god going through my head.

It is time to go. please God, let him say benign.


Friday, July 9, 2010

Surgery Is Done

The surgery is over. I'm sorry I did not update sooner but I've been in the middle of a pain crisis and spent Tuesday and Wednesday in bed. Tuesday was because of after-affects of the surgery and Wednesday & Thursday was because I was in a LOT of pain.

For those who do not understand what a lumpectomy is I will explain. It simply means the removal of the entire lump and possibly some surrounding tissue. This way they have the entire lump to biopsy. I wanted this method of biopsy because I did not want to take the chance of getting a false negative which can occur with a needle or core biopsy (they are RARE [false negatives]).

The nurses and anesthesia people were all wonderful and supportive. One gentleman held my hand and talked softly to me while I fell asleep. I was deeply touched by them saying a prayer that the lump turns out to be benign (non-cancerous), it was really sweet. I was a tad annoyed that the surgeon did not speak to me at all except for saying hello when we passed each other in the hallway (he going to speak with another family and me going to give a urine sample). Every other surgery I have had, the doctor has always come to me while I was in pre-op being prepped to talk to me, answer any questions, and tell me what to expect. He was also very quick when speaking to my husband when the surgery was over and I was in recovery. Ron said he talked quickly and left quickly just saying "the surgery went well and she's in recovery". No time for questions or anything else. I really dislike doctors who act this way. It is like they forget we are people and see us as nothing more than an object or something.

If it turns out to be cancer, I will not be letting this surgeon handle the mastectomy. I would much rather have a surgeon that cares dealing with me for such an emotional operation. It is a big deal for a woman to lose her breasts and I don't want some guy who is in a rush and can't talk to his patients being the one to remove mine.

I now have a 3 inches (or so, didn't actually measure it) cut on my right breast that is held together with super glue. It is tender and sore but not too bad. I CAN stitch, which was really nice! My return appointment with the surgeon is on the 14th but he did say the results may be in Friday the 9th, or Monday the 12th, so I will be calling the office to see if the results are in and they'll give them to me over the phone. I seriously doubt they'll give them to me over the phone, but I figure it can't hurt to ask.

As to the pain crisis, I think it was caused by the surgical bed/table I was on and the hospital gurneys. None of them were comfortable and I had to lay flat on my back, which is painful to me anyway, for a few hours. I was out for about 2 hours. The table/bed thing (not sure what they call it) in the surgery suite was not very wide and they strapped my legs down out straight which really hurt. When I woke up in the recovery area there was a pillow under my knees but I don't know how long it was there. So I got 2 days stuck in bed due to pain, but I did manage to do some stitching yesterday, which was nice. Mostly I slept off and on, a few hours here, a few hours there and read or stitched when I was awake.

I woke up at 11:45PM Thursday night so now I am awake. Most likely I will not be able to go back to sleep and will have to try and make it through all of today (Friday) without a nap, specially since I have a 1PM doctor's appointment to discuss my thyroid blood test results. Yay fun ..not. LOL

Well that's it for me. I'm going to try to finish catching up on blog reading as I have 282 posts in Google Reader.

Monday, July 5, 2010

Rain, Rain, Rain

It has been raining almost every day for the past three weeks here. Rain always makes my pain go up, most likely due to pressure changes in the air. So I've been hurting but dealing with it for the most part. I have felt rather odd for the last week, in limbo, just waiting for the next thing. I can't focus on anything and just feel antsy. I know why, it is because I am waiting for the lumpectomy surgery (tomorrow) and the biopsy results to follow. Since I don't know for sure what the lump in my breast is, I am left unsure of what to do next or what to expect. I really hate this part of any medical diagnosis, the waiting for results part. Once I know what is going on, I can figure out what to do next, research the diagnosis, learn as much as possible and start moving forward. But during the time period where I don't have a diagnosis, all I can do is wait and feel antsy and a bit lost. It sucks because I can't focus on anything, not stitching, reading, or anything else. I start and in a few minutes I get up and try to find something else to do. Oh well. Tomorrow is a step forward. I have to be at the hospital at 11:40AM and should be sent home around 6:00PM or so. Then comes another week of waiting for the biopsy results while letting my breast heal. Ohman that will be a hard week!

That's all that has been going on for me this week. Just...waiting.

Tuesday, June 29, 2010

Saw The Surgeon

I think this guy got his medical license from a Cracker Jack box or something.

What a most wonderful visit!! (NOT)

He started out wanting to know why I take the medication I take and I told him. He proceeded to tell me they never should have attempted to fuse my SI joint because "everyone's sacrum moves like that" (over 30 degrees of movement, very unstable)

According to him family history does not count in breast cancer, neither does the changes to my breasts, the calcifications noticed in 2006 should have been biopsied (no one mentioned it). No mastectomy because my reasoning for wanting it isn't good enough, and the above statements.

Lumpectomy only on Tuesday the 6th.

Would consider a mastectomy if a genetic test shows I have the gene (even though the gene and family history don't matter re: chances of developing cancer as he said earlier in the visit), and if lump is cancer then they will do a mastectomy.

According to him needle and core biopsies never have a false negative either.

Not a fun visit. Doctors really hate it when a patient comes in with ideas of their own and he is, apparently, one of those.

End result after crying from pure frustration: July 6th, complete lumpectomy to biopsy whole lump (which I requested and he didn't like but followed along on this point at least). That's pretty much it.

Came home, cried, went to bed. Apparently wanting my best chance at preventing breast cancer is not a good enough reason for mastectomy, the American Cancer Society lies to people, and everything I know is wrong. Lovely visit with a doctor *sigh*

So today I called one of the local oncologist centers and spoke with their nurse (the one who answers patient questions and such). After the way the surgeon so adamantly refuted everything I had been told, or read about breast cancer, I was confused and wanted answers. I wanted to be sure that my information was correct just for my peace of mind. So I called an oncologist office, I figure since they are the cancer treatment doctors they would have accurate up to date information regarding cancer. Yes family history does matter. If you have a first line relative (mother or sister) who had breast cancer, it increases your chances of developing BC. For me, my chance is very high because ALL female relatives had BC diagnosis, before menopause, and all died of BC on both biological mother and father's sides. The gene does count in increasing BC chances but apparently there are several additional genes that are being researched as possible contributors as well as the BRCA I and II. Yes enlargement, thickening of tissues (making it harder to diagnose possible spots on mammogram etc.), and calcifications in a person with family history can be "pre-cancerous changes" and/or precursors to cancer. (all of which I have) The nurse I was speaking with called this surgeon an "idiot" and I laughed. She then told me that despite prophylactic mastectomy being my best chance, I probably won't find a surgeon willing to take the chance on doing it until cancer actually shows up. She also recommended having the genetic test done because it would carry more weight with a surgeon and might tip the scales in favor of mastectomy since the surgeons are refuting an extensive family history are "not enough".

My primary care doctor's office called this morning to set an appointment for me to come in and discuss my thyroid test results, so while there (Next Friday the 9th) I will ask them to order the BRCA genetic blood test.

So at least I know that my information is accurate, even if my surgeon doesn't believe it to be. It is nice to know I'm not nuts LOL

All this stress, and today's lovely rainy weather, is driving my pain levels up pretty dang high. So its been a rough couple of days and it doesn't look like its going to get any better for a little while.

(This post will be duplicated on my stitching blog)

Sunday, June 27, 2010

How stress affects chronic pain

Having pain every minute of every day is not a lot of fun, but what makes it worse is knowing that every day things can make it worse. Changes in hormones and regular body changes before during and after menstruation make the pain worse. Stress also makes the pain worse. Stress often causes people to tighten up their muscles, without being aware they are doing so. This tightening can cause muscle spasms in some people (people like me with nerve damage or back issues for example) and just the added tension of tight muscles will increase the pain. The mental aspects of stress (such as whirling thoughts etc) lower my ability to deal with or pretty much ignore pain that is between a 2 or 5 on the pain scale. Instead, because my mind is so overwhelmed and I am mentally/emotionally exhausted, my coping skills are low and pain that is at a 2 might feel like it is at a 4. My pain tolerance goes down. This seems to be true for most CP (Chronic Pain) patients that I know.

Fighting pain, dealing with it, and/or just ignoring it every minute of every day takes a great deal of energy. If my energy is focused elsewhere (by whatever stressful situation is going on) then I have less energy to deal with my pain. This can cause me to feel more pain than usual, or even other symptoms such as all-over achiness that I do not normally have. I find myself napping multiple times a day and still sleeping for a minimum of 6 hours (or more) at night, I am tired after being awake for just a couple hours.

Facing a possible mastectomy and cancer diagnosis is extremely stressful, and it is affecting my pain levels. The fear, the unknown, the being left in the dark right now isn't helping either. My pain is higher than usual, my tolerance is lower, and my skin is now sensitive to touch. Even a light hug with arms around my shoulders causes my entire back and pelvis to throb. This doesn't usually happen unless I am in a severe pain crisis. I know most of this is caused by the stress and worry I am feeling. I am trying to keep myself from going nuts, doing deep breathing, meditating, stitching, cleaning (My bedroom looks MUCH better now!) and other means of stress relief, but it isn't making the stress go away. These things are simply keeping me from going insane and just running away somewhere.

So how does stress affect chronic pain? It makes it worse.

Friday, June 25, 2010

Stream Of Consciousness Writing

This entry is a stream of consciousness writing, which means whatever pops into my head will be written down. It may not make much sense, but it is not meant to. This is just to relieve myself. In the past I've done this in written journals when a situation that was causing extreme stress was going on and I found that such writings did help to alleviate some of the stress. What surprised me about it was also finding that doing this occasionally made the whirling thoughts either slow down a bit or stop completely. These are the thoughts that are running through my mind since I was told the lump in my breast was not a cyst or infection and a biopsy would be needed. Having lived with this time bomb waiting to go off inside me (due to family history of breast cancer) I did not expect to be this upset, after all I knew this would happen sooner or later (and probably sooner than later). Despite this my reaction has been intense, very emotional, and very convoluted which surprised me. So I'm going to try this here to see if it helps. (Family history: every female on both biological mother and father's sides died of breast cancer, all before age 50. my mother at 44 [I think] and her mother at 31. none survived 5 years from diagnosis) So here it goes...

OMGOMGOMGOMGOMG a lump..shit..fuck..its cancer..I know it, its has to be. omg omg omg omg I can't deal with kids, what about my kids? my son..he's just 14, too young to lose his mother. no I won't die, I can beat this. but no one in my family has ever beat it, none lived longer than 5 years from diagnosis. shit shit shit fuck fuck fuck NO think positive, its just fibroid growth, think positive think positive. can't oh god oh god please, please just fibroid please god ok? please? my niece, she's 2, sees me almost like a mom to her, this will devestate her and sam, oh my god baby girl..sam..ohshit..this will kill her she's already very stressed...god please just a fibroid come on god give me a break please. what the hell am I going to do? calm down missy calm down, you can handle no I can't ..can't I just run away? run away from it and hide somewhere? I am so fucking scared. why am I so scared? I've known for many years that this would eventually happen. god that pissed me off when marty said that on Monday "you knew this was a possibility" like that made it any better..know he didn't mean it negatively but shit that hurt and pissed me off, like I wasn't supposed to be upset, like it is no big deal, like I shouldn't be scared, worried or anything....but he's right, I have been expecting this for years, I knew this would happen eventually I knew breast cancer (for me anyway) wasn't an "if" it was a "when" and apparently "when" turned out to be at age 41..I should be stronger than scared, so fucking scared...want to hit fucking scared and hurt and that always makes me angry..don't want to be angry, it doesn't help god please, please god don't let it be cancer, please god give me a second chance..I thought I would be able to handle this better but I can't, I'm failing Ron, my kids, my friends because I'm falling apart. They all expect me to be so strong, so to face anything and just deal with it..but I can't. so fucking weak and fucking scared..vulnerable.. Ron! this is going to devestate Ron, ohmygod I never wanted to hurt Ron and I know this is hurting him..he's so clingy now..he's not sleeping scared..I can see it in his eyes..never wanted to hurt or worry him like this..ohgod I'm failing him, failing myself, failing everyone..please make this go away, please please please...Ron, ohgod I need Ron..I love him so much and I know after his mother's death from cancer this will be flashbacks for him. he told me years ago that he didn't know if he could go through cancer treatment for someone he loves again. he's already had a heart attack..what if the stress of this causes another? oh god please no. please please please give Ron the strength to deal with this..please don't let him die or have a heart attack. ohgod I can't believe this..why now? isn't a lifetime of massive pain enough? Isn't knowing that the pain will just get worse every year, eventually needing a wheelchair and probably ending up in some shitty nursing home unable to care for myself due to pain enough punishment for whatever I have done that was so fucking wrong? what the hell was I in a past life, Adolf Hitler or something? what did I do wrong to deserve chronic pain and now breast cancer? think positive missy, think positive it could still be a fibroadenoma, it may not be cancer. you have to think positively. yeah right, come on you idiot you know its had pre-cancerous changes back in 2006 and after those type of changes a cancer diagnosis often follows within 5 years and this is the 4th year. the damn thing is 2.4cm long almost an inch and wasn't there 2 weeks ago. it grew fast..does that mean it is a very aggressive cancer? ohman please no. so tired..can't do this I just can't. this is horrible so horrible. I hate not knowing..why isn't there a simple blood test to detect breast cancer so people don't have to wait days or weeks and drive themselves insane? I don't even know when the biopsy will be done. why didn't I get the mastectomy in 2006? why didn't I push for a second opinion? why was I so stupid as to believe that surgeon that there were no other surgeons that do mastectomies in my town? stupid stupid stupid bitch. I should have done more, I should have been willing to go to pensacola or tallahassee or anywhere else to get a second opinion. I shouldn't have just let it go. I should have done the stupid genetic test he wanted despite the difficulties of life insurance and all that shit, just to get the mastectomy and lower my very high risk for breast cancer. stupid of me so damn stupid. why did I just let it go? why didn't I push harder? oh god this is horrible. breathe missy will be okay, stop freaking out...<breath > <breath> <breath> <close eyes and breathe for a minute or two>

tumor..solid palpable mass..biopsy necessary. shit shit shit so fucking scared. will the surgeon do the is my best chance at beating it if it is already cancer or preventing cancer if its not cancer yet. but will he do it? God please, make the surgeon do the mastectomy, please god please please please..give me a chance here, for my kids' sakes..please don't make my kids go through losing their mother...please don't make Ron have to relive the worst time of his life..please god. chemotherapy, throwing up ohman I hate throwing up..losing my hair and being bald ohman ohman ..I can do this..I'm strong..I've come through a lot in my life..abuse..sam's abuse and her intense long struggle with ptsd, severe depression, d.i.d all of it..divorces..crap with my so-called family..this should be easier..but its not..its not any easier..this is so fucking hard..this is more terrifying than going homeless with an infant relying on me..ohgod pleasepleasepleaseplease make this go away..please can we do the last 10 days over again lump no nothing..I swear I'll demand the mastectomy I should have gotten in 2006..please god make this go away. come on missy stop being a blubbering baby..just stop this doesn't help anything going round and round like this..STOP IT..I can't..I wish I could because this is so stressful..I keep crying in the bathroom so no one hears me, so I don't upset anyone or make them any more scared than they already are..Kyle's statement when I got home after the mammo.."you're going to die?!?" keeps going through my head..the fear on his face..ohgod I can't do this to my baby..I can't promise him I will live because I might not and then he'll be even more pissed that I lied to him in addition to so hurt and angry that I died..shit shit shit shit..this is just horrible. <deep breath> OK enough of this shit..I'm going to go stitch something and force my brain to stop this round and round..tumor..cancer..its cancer, I know it instincts are screaming that it is..what if its not instincts and just fear..I've been scared before but never like this. now I know what goes through a person's mind after they hear they need a biopsy..this is something I think I could have lived without knowing..I don't like feeling this body has betrayed me again..hell after my back and pelvis I should be used to it, but I'm not. I should have been able to handle this much better, but I can't. I can't handle this with the calm I thought I would. I'm not strong like everyone thinks I am. I'm weak, vulnerable, terrified and small. ENOUGH MISSY! ENOUGH! STOP IT! GO STITCH OR CLEAN OR ANYTHING STOP JUST SITTING HERE DRIVING YOURSELF NUTS IT DOESN"T HELP. GO!


And that is how I finished "Frogging Around" the other day. This crap is still going through my mind off and on today and I've taken 3 naps so far to escape from it. I've done laundry to escape from it. My back is killing me so I can't do housework and vent the nervous energy that fills me. I don't know what to stitch now, I can't make up my mind. I feel like I am alternating between spinning in circles and being lost alone in the dark. This sucks.

I am trying so hard to be strong, to be there for my family and friends so they don't get more scared when all I want to do is run away or hide. I feel myself closing in on myself and withdrawing from others, curling up to lick my wounds. I know it is okay to do that when one needs to, so long as it doesn't last for too long, but I am not sure I can pull myself out of it. This really does suck.

I'm not sure typing that stream of consciousness helped or not, I will probably have to keep doing it until Monday when I find out whether the doctor will do the mastectomy or not. I am really hoping that he will, that he will realize it is the best option regardless of the biopsy results. His nurse called to remind me of my appointment on Monday and blew my mind. She asked me if I was okay and handling this okay, then listened to me babble for 15 minutes. She did not interupt me or tell me she had other things to do. She just listened and told me she understood and that it is okay to be scared. She assured me that Dr. Wong would listen to me and help me make the best decision and he is looking forward to seeing and helping me. She told him everything I had said when I called on Wednesday afternoon. This surprised me but also made me feel better. Is it possible that I really have found a doctor who is a doctor because he cares about people? I hope so because it will make this all a lot easier I think.

Ok I am going to work on Christmas Dreams I think, it is the wip I have that is closest to being finished. I am sorry if this post upsets anyone. Please realize that this was not my intention, I just needed to get it out of my head. I do feel a bit calmer, so that is good :)

Wednesday, June 23, 2010

Not A Cyst

Diagnosis from Mamo and Ultrasound: Solid Palpable Mass

Next step: Biopsy to determine if it is malignant (cancer) or benign (fibroid type growth or other non-cancerous mass)

Thank you all for your thoughts and prayers, I appreciate it.

I'm going to go hide for a bit, cuddle with hubby and see if I can get my mind around this, get past the fear and shock and in to the "fight it" mindset.

Terrified and needing strength

As if a broken pelvis and chronic pain are not enough, I found a lump on my breast this weekend. I saw the doctor on Monday and she confirmed the lump. They are going to do an ultrasound and mammogram today. On an ultrasound a fluid filled thing (such as a cyst) will appear gray, a solid growth (like a tumor) will appear black as the sound waves can not go through them. I am praying for gray on the ultrasound.

Approval code paperwork has already been started for the surgeon in case I need a biopsy, this way I won't have to wait for approval codes.

I am terrified as breast cancer runs very strongly in my family and my chances are very very high (95%) to contract breast cancer in my lifetime.

I would appreciate any thoughts, prayers, well wishes or anything. Due to this I just haven't been stitching as I am too nervous to pay attention. Heck I haven't been doing much except praying for a cyst or something easy to take care of and not a cancerous tumor.

I'm sorry

Monday, June 21, 2010

Depression Messes With Everything!

Depression hurts those who suffer with it in so many different ways. First there are the emotions involved, feeling sad all the time, feeling down, anxious, overwhelmed and so many more. The loss of energy is also a major pain in the neck. Even if you manage to drum up the desire to do something, you are just to dang tired to do it. Body aches and pains are a nasty effect for anyone but especially so for someone who already lives with pain everyday. I am not trying to say that the aches and pains a non-chronic pain patient who is depressed feels are somehow less annoying or anything like that. I just mean that for a depressed chronic pain patient, the aches and pains from depression increases their overall pain level which makes it very difficult to manage the extra pain. Complete loss of sex drive also stinks. This can result in your partner wondering if you have lost interest in them, or no longer find them physically attractive or other negative thoughts. The complete loss of caring about anything is also a horrible effect of depression.

As I tend to be the kind of person who genuinely cares about other people, their situations and more. Losing that made me feel even worse. I am very happy with my compassion and empathy for others. It is, to me anyway, a good way to be.

These, and a few others, are all symptoms of depression that I have dealt with before and which feel "normal" to me, at least normal for when I am depressed. But recently I realized I have another symptom that really bothered me. Though I'm not sure if it is a symptom or just a side effect as logically it could be a step or two further down the "nothing matters at all" path that I wandered through with this bout of depression. Anyway I found myself once again able to enjoy my cross stitching hobby. Picking a chart, getting together the floss colors for it, picking out a fabric and getting a piece big enough for the design plus a bit extra for framing/finishing, then the actual process of stitching the design and watching it come to life on the fabric, each stitch bringing forth more and more of the design on my fabric; the whole process is just a great deal of fun and very satisfying to me! I may not have a job, but I know I am not useless or worthless because I can create beautiful stitched pieces of art! (leave my delusion alone please ROFL)

I have started a few different projects and picked up an old one. There is the Quaker piece, Frogging Around, the Delft Card (which is now finished!), Christmas Dreams and the Anniversary Sampler for Ron (DH) and I. As I got close to finishing the Delft Card I got scared! I kept picking it up, putting in a stitch or tow, then getting terrified and putting it away. Eventually I stopped even trying. This of course made me feel silly, sad, angry and more. I didn't talk to anyone about it because I was afraid they wouldn't understand, or think I was making it up to get attention, or think I was over-reacting and there really wasn't anything wrong.

But feeling my heart race, sweat break out on my skin, my hands shake and my breathing speeding up were all quite real symptoms and the emotion was also quite real; I was afraid to finish. I think the fear may have been two-fold in nature. The whole fear of failure/success so just don't try thing, I know I felt afraid of finding out that I couldn't finish it. Then there was fear of screwing it up real bad and having to start over. With all those doubts rolling around in my head and the fear knotting my stomach, it just became easier to put the design away rather than continue to try and stitch.

Last night I finally told my DH about how I have been failing, asking him to help me push past this. I also told my friend Angi, who is also a stitcher. I sat down, determined to finish the Delft Card I started at beginning of month to send to someone in the UK so they could sell it and raise money for cancer research. Angi and I sent text messages back and forth and both of them kept reassuring me that I could do it. I did ask both of them at least once if I could stop. The last time I asked I was 47 stitches from done. They both told me no and Angi's DH (Dan) piped in with a no as well. Thanks to their support I did finish the card. At first I felt mostly relief that it was done. Then came disbelief, I kept staring at it thinking "It's done?? How did that happen? Is it really done?" and checking for any missed stitches. I just couldn't believe I had done it! Then after a few minutes the wonderful rush of joy filled me and I got to experience the wonderful rush that accompanies finishing a piece and it FELT GREAT!

When I got on my blog to post the "done" I found 4 comments awaiting approval. They were all very supportive, understanding, and encouraging. No one laughed at me either. It made me feel so much better!

Still this was a rather odd experience as it is not something I have had happen before, I have had something similar but the reason for it was very different as it was the result of an abusive relationship and it affected my ability to write. Heck I couldn't even write in my journal, though I have finally gotten over that and am writing again. So here is hoping that this is gone also! I did some more stitching on Frogging Around and should have it complete tomorrow I hope!

Being able to write all of this stuff down (so to speak) on this blog has been so very helpful to me since I started it. The comments I receive make my day and better still I have met other people in similar situations as myself. This has been very helpful to me! Just knowing that I am not alone helps a great deal!