It has been a couple of years since I set aside my blogging to pursue other things to keep my hands and brain busy. It hasn’t worked out so well.
I am a creative soul and while Frosty and I were on our grand adventure traveling across the country to Georgia and back, I took up creating jewelry made from beads, wire and special beading wires and threads. I loved it. I created some beautiful pieces that made some of my family and friends happy but unfortunately the expense outweighed any profits. I sold only a few pieces to a nurse at my doctor’s office and to some relations by marriage.
I really do enjoy making the jewelry and wear it often when I leave my house and am running errands. I get compliments and have had people ask for my number so they can buy jewelry from me. Unfortunately they never call and order anything and the money I put out for tools and materials far outweighed the amount I collected. It is therapeutic to create and it does help calm me to go through the process but it doesn’t help my bank balance in the least.
My health has not improved, I am still on disability with Fibromyalgia, degenerative disk disease, osteoporosis, a bad knee that I haven’t even bothered to get a doctor to look at yet, depression and since I last blogged now a brand new diagnosis of Breast Cancer (again). It has been 17 years since I had my first diagnosis of Breast Cancer and many things have changed since then. I now live alone, my kids are all now grown and live scattered around the United States, the closest one being about 2 hours from my house.
My financial situation is worse in that my bills have increased but my disability payments have not and my ex-husband refuses to comply with the court ordered support payments that he personally signed in front of a judge in open court. The last contact I had with him he said he might possibly have some money in APRIL of next year. Our divorce is not yet final since that requires more paperwork, more ink for my printer and more courage and fortitude than I currently seem to have. I am working on that.
Depression is something that I fight with and when I sat down and thought back over the past few years I realized that I was happier when I was blogging. It helped me vent, it helped me think and plan and overall kept some of the depression at bay.
Now I am facing multiple surgeries, a double mastectomy and reconstruction. I have a long road ahead of recovery and pain. My financial situation is dire and food is becoming hard to come by. Each month I get my disability on the 3rd and pay my utilities, gas, electricity, water, internet, 2 credit cards, insurance for my car and house and of course my mortgage payment. All of that on $1029 per month. By the time my bills are paid I am hard pressed to buy food. My pride gets in the way a bit and my location makes even finding a food bank a difficult thing. I am in Kern county and the main food bank is in Bakersfield 70 miles away.
Last year I made some Hamburger Helper and stretched out the portions to cover me through Thanksgiving. My ex taunted me and sent me a text saying they were going out for Mexican food the day after Thanksgiving when I sent him a message begging for my support money. My youngest son did one of those GoFundMe things and raised about $400 to get me groceries for December and I was so very grateful. I bought a turkey and froze the cooked meat to get me through December and into January.
This year isn’t looking very bright. I find myself hoping that they schedule my mastectomy right before Thanksgiving so I get a good meal. Pathetic I know but that is the truth. After breaking down a few times alone in my house with just a cat and a dog for company I decided to work on my mental health by starting to blog again.
So here it is, me blogging to keep my sanity and maybe share with others that find themselves in similar situations.
I have what I like to call Princess and the Pea Syndrome.
Do you remember the story? It was a Hans Christian Andersen fairy tale in which a prince was in search of a princess to make his bride but was having a hard time finding a true princess. In the end a true princess was found by placing a single pea under 20 mattresses topped by 20 feather beds. After the princess slept on the mattresses she claimed that she had not slept a wink and was black and blue because of something in the bed.
I must be a princess. I cannot recall the last time I truly had what you might call a good night’s sleep. Tossing and turning, pains all over my body and being awake isn’t much better. Some days the lightest of touches feels like being poked on a fresh bruise. A well meaning hug can bring forth additional aches and more pain.
You see, I have fibromyalgia. Nobody is sure what causes it and there is no cure. I have lived with it for about 15 years now and have tried everything under the sun for relief. Personally I am of the opinion that undergoing chemo for breast cancer triggered it, but science has yet to determine definitively if that is true.
According to the Mayo Clinic symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event. Since chemotherapy ravages the body seeking out those nasty little cancer cells and causes you to feel like your whole body is revolting, I blamed my exhaustion and body pains on that at first.
Quite frankly during the first year of dealing with my breast cancer I was not fortunate enough to be able to stop working. There was no time to stop and wonder what was normal and what wasn’t. My health insurance was through my employer and I would not have been able to afford the surgeries and treatments so I worked and blamed the pain and exhaustion on the chemo, then the radiation treatments. Working the graveyard shift at the Las Vegas Hilton, I went to doctor appointments, chemo then a few months later daily radiation treatments during the day and grabbed sleep here and there when I could. I was the Little Engine That Could, chugging away, going and going and going…….okay so I was a combination of the Little Engine and the Energizer Bunny at work and would totally collapse by the time I got home.
Fibromyalgia is one of the so called invisible diseases. You look just like everyone else on the outside but you have pain everywhere. 3 to 6 MILLION people in the US have this, no doubt you all know someone who is suffering from it……oh yeah…ME!
It actually took years before the doctors told me that I had fibromyalgia. Way back in 1990 I had a stabbing pain in my chest that had me terrified that I was having a heart attack. My boyfriend called the paramedics who determined that I did not appear to be having heart irregularities but the excruciating pain had my blood pressure at a terrifying 210 over 120. After months of periodic attacks and horrible pains in the left side of my chest they told me I had something called Costochondritis, a chronic inflammation of my chest wall. Again there is no cure.
Because of the costochondritis, which would come and go like an unwanted visiting relative, I was always looking for ways to rid myself of this pesky condition. It seemed to me that the chemo treatments, which were given to me through a port they installed in my chest, had aggravated and caused an increase in the chest pains.
Constochondritis is a total pain in my ass. Every time I get a new doctor or have a bad attack they have to rule out heart issues. I have had more EKG’s than I can count. Being a princess I also have very sensitive skin. Every EKG leaves me looking like I was attacked by a giant wild octopus with giant circles of reddened skin where each of the electrodes was attached to me. Yeah, I am a princess.
Since seeing a bunch of different doctors didn’t seem to be helping I started investigating chronic pain conditions on my own. About 4 years or so after my initial breast cancer diagnosis and following years of exhaustion and pain I came across an article about fibromyalgia that I took to my doctor. Since she had been treating me for the chronic chest pains and knew my history she performed another tortuous test to confirm that I did indeed have fibromyalgia. Finally I had some answers explaining the crippling exhaustion and constant pain. Answers but no cure.
On my good days I rush around trying to make up for the bad days by doing everything I couldn’t do before. I am like a crazy woman doing dishes, vacuuming, scrubbing toilets, whatever on one day and bed ridden the next. A simple shopping trip to the grocery store can sometimes put me in bed or stuck in my recliner for a few days. Ahhh, to really be a princess and have servants doing all that stuff for me. I’ve had to give up working, I could no longer tolerate the pain and be functional in a work environment. My current therapist suggested that I start a journal but that is soooo boring that I decided instead to reach out, through blogging, to others with fibro or people that know someone that has it.
So this is me, reaching out……..you are not alone and no you are not crazy. The pain is real and although currently there is no cure, there are legions of doctors, hospitals and clinics out there trying to find some answers and hopefully some day a cure.
Signing off for now, this is Princess Grynnie