Another pain day pushed through

Yesterday I went to the grocery store and Wal-Mart with my husband, I was feeling pretty good, we were probably gone a little over an hour. So an hour of walking, I made some chicken enchiladas for dinner, another hour on my feet, dinner was great, sat on heating pad an hour or so, went to bed early.

Today, holy molly, what in the world!!! I have pain going on everywhere. I swear I have daggers in my back and my feet going into my heels. It is amazing how one day you feel great and the next day everything goes to crap. The sun is out you feel awesome, the sun is out you want to curl up in a little ball and die. It rains outside same scenario. I cannot figure out what keeps it going good or bad.

And then I try so hard to be the strong one, I am OK. What am I thinking, I shouldn’t have to act like I am ok, especially when I feel so bad but I hate saying I have let myself get in this much pain, like it is my fault. I hate being where I am and have no idea how to fix this.

I really want to feel good, I would do anything to go back to feeling like I did 7 years ago. Loving life, running with my guys, throwing a football. So unfair.

Using Spoon Theory to Explain Chronic Pain

By Victoria Abbott-Fleming

Being called a liar is not nice, especially when you’re being totally honest, and that’s a scenario that is too often experienced by people living with invisible illnesses such as arthritis and complex regional pain syndrome, or CRPS. Their pain is not visually apparent, so when they park in disabled spaces or complain about feeling unwell, they can frequently be treated with derision from others who have no idea what that person is going through.

Fifteen years ago, lupus patient Christine Miserandino felt that words were insufficient to adequately communicate to able-bodied people what it is like to struggle daily with chronic illness. Instead, she used 12 spoons in a café as a metaphor for her daily energy stores and gave the spoons to her friend, taking one back every time an activity like taking a shower or getting dressed was mentioned. The message gradually got through to Christine’s friend, who was shocked by the revelations of the experiment.

Strategic spoon management is crucial for people living with chronic pain and illness, but they can utilize a few tactics to make their condition easier to bear. For instance, they might batch-cook on a day off so that there are readymade meals waiting for them on hectic days where cooking could present a struggle. Also, it helps to keep a stock of food close to your bed for days when the pain is at its worst; at least this means you won’t need to get up to eat if there is nobody else around.

This infographic featured below from CRPS/RSD awareness charity Burning Nights explains the now-ubiquitous Spoon Theory in further detail and offers some advice on how to manage chronic pain effectively from CRPS patients living the fight each day.

Courtesy: Burning Nights

Neurologist visit

Went to the Neurologist today, he voiced his opinion on Arachnoid Cyst, funny when you know what is going on and you get dismissed by a professional as “it isn’t causing any symptoms, it is nothing.”

So he prescribed me a medication to take at night that will help me to sleep, relax, keep headaches from happening…. will eventually replace Temazapam and will also possibly lower the dose of Cymbalta that I am taking. Does not sound possible but I will try anything.

The nurse asked me to remember 3 words and would ask me for them again at the end of the session, I laughed…. all I could think of was when I did this test with my Mother while she was being checked for Alzheimer’s. And yep, I couldn’t remember all of the words, it was funny for a second and than reality kicked in.  I looked at the nurse and told her I was an accountant for 35 years, not anymore. She told me I needed to find a new passion. My short-term memory is awful and I know that it is mostly medically induced, then pain plays its part. I hope I don’t get Alzheimer’s……

So it was a quick appointment, he had me walk the hall, turn around, checked my strength in legs and arms and had me touch my fingers to my nose.  The first time standing, the second time seated.  I hit my cheek while standing, my glasses while sitting down, he said good thing I had my glasses on or I would have poked myself in the eye, ugh….

So my PCP sent over my brain and lumbar MRI but not my Cervical so had to wait for that, Neurologist didn’t want anything to do with my brain MRI.  So he said everything looked good on Cervical hardware (C4-5-6-7) and since I had not had a Thoracic MRI he ordered it, see me back in 3 months, bye.

I did notice that the next appointment is with a different doctor.  Maybe in the long run the new one will be helpful. Believe in AA would be great.  Researching new doctor and medication will begin soon.

Sensations of Arachnoiditis

I am sitting here in the recliner in the bedroom, eyes are closed, the recliner is out. One leg is stretched out, the other is bent at the knee. Left hand is resting on my left leg and right hand thumb is holding iPad on lap with rest of hand on leg.

First thing is that the curve of my neck has been straighten out with fusion hardware so my neck is straight to my head, without the natural curve. My head feels extremely heavy, almost like a weight is sitting on top of my neck.

As I sit here I have small jumping sensations all over my body, not hard jerks just small motions. Like you pick up a finger with the rest of them down, just a little, this happens in a finger, then a toe, my knee, my heel, just a small twinge.  Then I feel my neck tighten, I move it slowly, roll it from side to side, it cracks, then strong pain in nerve up the left side, I move it to other side and my neck cracks again, still pain in the left nerve. I try to straighten it up and it feel like it is hung up on right side between my shoulder and neck.  Have to make it stop by swishing my hair from left to right. Rub on it a little, moving my head, now a pain shoots down my back to my butt, lift my butt up and the tingling goes down my left arm through my fingers. I lift my butt again and have to crack my ankles, they are loud cracks. Now I am back to feeling numb everywhere and the pain moves to my head.

First it feels like a headband too tight around my head, in the front the pressure builds, then it moves through my eyes to my ears, pain like in my ear drums to the back of my head, where the neck and head meet each other. It starts as pressure and then builds to a terrible sharp pressing pain. I try to relax as my pain escalates from 4 to 8 in a split second. I just sit still, putting my fingers over my eye sockets, waiting for the pain to stop.  How long does this have to go on, I am thinking to myself, how much more do I have to take, then it slowly subsides.

I clench my toes and squeeze by fingers into the palm of my hands, such pain this brings, and then my left side becomes numb….I can’t focus my eyes, my whole body aches, each body part feels separated with its own level of pain. What can I do to make it stop….

 

Pain of Arachnoid Cyst

It doesn’t matter what you take, how long you sit, stand or lay down, you cannot escape the pain.

I can be relaxed, as much as I can, with distractions and all of the sudden I have excruciating sharp pains in both of my hands. It radiates from the top of my hands above my thumbs through my hands, I ball up my hands and grit my teeth in pain, trying not to show anyone that my pain has spiked from 4 to 10 in a split second, then before I can relax my hands the pain shoots down my legs to my feet, oh my God, what is this now the heels of my feet feel like I have been walking a mile on sharp rocks with no shoes on. About five minutes later the pain subsides and now I am back to pain in my neck and back, but wait we aren’t done yet….here comes the headache….it starts out on the top of my head, like a band around my head being squeezed tighter and tighter, then it radiates down the back of my head to my neck and sits there, I can’t tell you how long, it is just the worst pain, stabbing pressure. With the neck fusions from C4 to C7 it feels like the hardware is being tightened harder putting pressure on the front of my throat through to the back of my neck and head. Then my hands start to quiver and let out a shake before it finally relaxes. Now I am exhausted, I can’t think straight, I feel like I can’t take a deep breath, all I want is to go to sleep, I can’t hold my eyes open, when will it start over again, I hate the pain.

Another day

I had a hard time walking the other day, don’t ask me which one, I can’t remember. I hit my knee on something. A table or whatever and now my knee feels like it is buckling when I am walking. I hit it so hard I did break the skin a little and have a pretty purple bruise coming up on it. At least it only really hurts going up or down steps. Just walking after the pain subsides seems to be ok.

I also smacked my shoulder into a wall trying to talk and walk at the same time. Funny how I can’t do two things at once anymore, lol. It is sore but I can’t turn it around where I can see it…. or I mean turn my head around to see my shoulder. Either way I couldn’t tell you if it is bruised or not.

Another day….

From my husband

February 8, 2018

When I met my wife Kathleen on December 6, 2009, I had found my perfect match. A beautiful, vivacious blonde that was full of energy and ready for adventure with me and my 8-year-old son. We played as a family every time we had my son. We wrestled, played baseball, football and every form of game we could think of to play. We hiked, swam, walked and jogged together. We were a fun-loving family.

I married my wife in September of 2011. We continued our adventures together and filed for custody of my son which we were awarded in July of 2013. My wife and I, often accompanied by my son explored the country. We went all over Boston, Chicago, St Louis, New Orleans, parts of Florida and took a two-week trip exploring Western US all the way to California and back.

Sometime after we were married, my wife stopped  taking birth control on the advice of her doctor. She was supposedly in a post-menopausal state. Almost immediately my wife began to have issues with her health. We began going to doctors to have her various conditions checked for whatever was going on. Some symptoms were menopause like and some were not. Hot flashes and sweating were almost “normal” for her age but there were times when her body was so sensitive that she felt pain when she was touched. For a person like myself, that was an issue. I would have to ask my wife how she was feeling before I could touch or hug her. Physical contact became as issue with us.

In December of 2012, my wife had her first surgery putting a plate on her neck to fuse 3 vertebrae together. This plate caused her several issues. She had to learn basically how to function again. Even eating became an issue. Any bite too large and she would choke from the pressure at the back of her throat. Also, about this time, her issues with her body became worse. I jokingly asked the doctor if we could put her back on birth control to see if the symptoms would cease. He said that would only greatly increase her odds for getting cancer, so no. After seeking other opinions, my wife was diagnosed with Fibromyalgia. We knew very little about the  disease except that most people disregarded it  like they used to do with Crohn’s. When we told people what we had found out, we were dismissed by most.

My wife’s symptoms got progressively  worse  while  the doctors tried one thing after another. Along the  way, my wife was found to have degenerative disc disease in her neck and back. This caused her intense pain and the condition was treated by very painful shots to the affected areas to avoid having surgery again. We also found out my wife had restless leg disorder. A condition that would cause her to wake frequently during the night and aggravate her other issues.

Osteoarthritis followed that one. More medicine, less mobility. Our activity outside the home ceased. My wife could barely stand going out to watch my son play in football games at school. We no longer did anything as a family outside. My wife could only direct my son and me doing things she used to love to do. Planting flowers or playing outside were off her list. The pool that had come with our house sat unused.

My wife’s mental faculties also began to suffer. Ever the quick wit and in the top of her field in her profession, she began to slow down. In frustration,  she would often not take needed pain medication to  allow her to  complete tasks at work. Her employers began to take note of her decline and she was fired from her first job as a Senior Accountant for a multi­ million-dollar organization. Refusing to give up, my wife searched and found other employment. She became the controller for a local group of companies. She relished in the challenge and worked countless extra hours at home to make up for her diminishing abilities at work. In the end it wasn’t enough, and she was released from that job as well. A pattern developed. My wife worked a series of jobs, each one with less duties than the last. For a proud, stubborn accountant, she was being relegated to being no more than a book keeper. Forced to do jobs that she could have done while in High School with no formal training at all. Each subsequent job brought her working from home more often. She was working longer hours each day but could work at a slower pace and stop to lie down when necessary.

We asked doctors about changing medication to make her brain and body function like in the past. The tradeoff was made clear to us. Either take the medication and be able to have some body function or not take the medication and be in extreme pain all the time. That’s not a choice.

Now my wife stays home. The doctors recommend as much rest as possible for her. She is unable to do simple housework. She has stopped cooking except for times when she has someone to help her lift and do things for her. She can’t clean house, dust, or sweep the floor. She can sometimes help fold laundry if I put it on the bed. She is unable to perform her old job duties for any company. The last one fired her for poor performance. A terrible blow to her ego. I even did our taxes this year. Most days, my wife moves from our bed, with it’s heated mattress pad and blanket, to a recliner with built in heat and a heated blanket to cover her. The heat seems to make her more comfortable. She can’t stand cold and can’t get in the sun due to other issues with skin cancer. She beat that one thank God, except for a nasty Keloid scar on her chest. The same thing that prevents the doctors from fixing her carpal tunnel issues. My wife walks to one side now with a shuffling gait. We found out that this is from a cyst they found on her brain.

This past weekend I got my wife out to go see some work that had been done at my Father’s house nearby. I waited while she took a shower and dressed. She was so exhausted from that little activity, we had to wait a while for her to recover. We made the short drive to my Father ‘ s and as my wife was getting out of the car, she started to fall. I instinctively reached for her and grabbed her arm making her cry out in pain. She didn’t fall, but it made the other people present jump and wonder what had happened. You just can’t reach out and grab a person with Fibro. It’ s like you punched them.

My wife also has this cute purple cane we got for her. She is embarrassed and humiliated to use it, but it keeps her from falling and beats having to be stared at for using a motorized cart. My wife still has immense pride in herself. She still has desire to do the things she once did. The difference is that now she is trapped in the body of a person that can’t do those things.

Our dreams of exploring the rest of the country and even the world are gone. We can only hope that when I retire in five years, we can spend as much time together doing what we can, while we can. In the meantime, we have had to cut back where we could. Canceling memberships to the local YMCA for our son. Canceling cable television. Cutting back on expenses. We stopped paying on our time share since we have no hope of ever using that to take vacations. We can’t afford the fees anyway since we are down to one income.

The bottom line is we lost what we had. My wife has been changed fo rever by the things that have happened because of her condition. The doctor has already hinted that he will soon take away her driving privilege. If not for modern technology in her vehicle, he already would have done that.

We would love to go back to those times just seven short years ago and relive them. We would love to take it  all away with a snap of the fingers or a wiggle of the nose. That’s not reality. The reality is we have to make the best of each day. We pray for a good day where my wife is in less pain and able to walk in a store like others take for granted. Even though she has to walk holding onto my arm, she fights using those carts. She fights to be normal. She fight s every day to be the person she once was. She fights to be a Mother to the son she  accept ed into her life. It’ s a losing battle and in the back of our minds, creeping ever closer, is the thought that the day is coming quickly where my wife will no longer be able to function and will have to be in constant care.

Michael Tackett

Virginia March 29, 2018

So hard to get acclimated to a different climate. Seems like everything is swollen, stiff and I am also staying in a upstairs room so lots of stair climbing, which is a killer on the knees and hips.

I do love visiting with my family.  I am staying with my sister-in-law, she also has had an arachnoid cyst.  Hers was on the side of her head and about the size of a golf ball. We must have talked about hers for hours when I first arrived.  So helpful to be able to talk face-to-face with someone who has gone through the experience.  She had hers drained and a stent put in.  So weird how we can have something growing inside of our head and not know that it is there.

She said that there it is the same senareo here, they try to play down what it is. The neurologist is the only player, they are the ones that are going to watch the growth, decide on when to do follow up MRI’s and decide when something else has to be done.