Category Archives: Health
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.
Part One began when I had the crazy intrusion to my home of a woman scared for her life. In the middle of the night, around midnight. I never did tell you all what happened with that. After my 911 call to the local police I was left in the position of being alone with this semi hysterical woman in my living room. Now what do I do?
It wasn’t like she was a friend or even a close neighbor. But she was a frightened woman and with my personal experiences in dealing with a schizophrenic male in my house I understood her fear. She babbled on nervously telling me that her son, whom she described as being 6′ 10″ and aged 35, kept saying that she stole his invitations and that he needed those invitations. She said she had no idea what he was talking about, that she had never seen invitations to a party or anything like that but that he liked to go to raves. She said he began tearing things apart and when she attempted to use the phone all of the phone lines were dead. She said that he must have cut her phone lines. She also said that he had grabbed her purse and taken all of her money. She continued to tell me of violent rampages and him urinating on her carpet deliberately….who does that?
Crazy talk. Why does the midnight hour bring on such craziness? I have no idea what happened in her house, I could only nod sympathetically and offer her some water. I no longer keep sodas or things like that in my house and pretty much only drink water and tea. Occasionally coffee but at that late hour coffee was kind of out. So water it was.
The dispatcher had said that the officer would be heading out to her house and would be getting her son out of there. Perhaps I am a bit naïve here, but to my way of thinking if this guy is getting violent and she is saying she is afraid for her life…shouldn’t the police be getting this guy evaluated? Living in California I have often heard people joke about “5150” which is code for the California law for an involuntary psychiatric hold. This allows qualified police officers or clinicians to detain individuals that may be a danger to themselves or others. If he truly is schizophrenic then it doesn’t take much for a violent situation to turn into a tragedy. On the other hand how did I or the police officer know what really went on in that house?
Sometimes it takes an eye witness to truly understand the crazy part of schizophrenia. You see the person with the schizophrenia BELIEVES with their whole heart that what they are seeing and hearing is real. So if you talk to them their delusions rule the conversation and nothing you say or do will get through because they believe what they believe. The voices the urges they are all very real to them.
So here I am alone in my living room with this strange woman that I didn’t know babbling all kinds of crazy things. It began to occur to me that she might be suffering from the same thing as her son. Or was it her that was the one with the mental illness?
How do you know the truth?
With my step-son I can only tell you what I myself witnessed. He had moved out of our house after The Big Fight and we had moved to Utah. It really didn’t take long before we heard from him and his relationship with his girlfriend and her mother had deteriorated as we had known it would. So he moved back in with us. I still remember the first day he was back with us. We were living in Heber City, Utah in a rental house. I remember driving him around in my ’96 Trans Am with the t-top off and showing him the beauty of this new area and for awhile he was the sweet kid that I remembered although he was now 18 and 6′ tall. I was so determined that his time in Utah would be different from Vegas.
It took a lot of research and fighting with my husband, but I got him enrolled in the alternative school to try to get him a high school diploma. I also got all of the paperwork filled out for him to get Social Security Disability for his schizophrenia. It took awhile but he qualified and had all of the records to prove it. Of course we listed my husband as his representative so the checks went into a separate account with just my husband’s and his name and his living expenses came out of that. With some assistance from the local governmental agencies we got him signed up with some job services and the one and only psychiatrist that was employed by the county.
It was a constant struggle with my husband. By this time I had already figured out that there was something seriously wrong with me. Every time someone bumped into me it was excruciating. I was 2 years post breast cancer when we moved to Utah and according to all of the books my side effects from the surgeries, chemo and radiation should have been gone. But I was tired all of the time and was hurting all over my body.
Every time I walked into the kitchen my step-son would come out there and say “What’s for dinner?” It didn’t matter that he had just eaten breakfast or lunch or whatever. It was like it was a compulsion. He would also crowd me in the kitchen and deliberately bump into me. He knew it caused me pain but he kept doing it to the point that I started refusing to be in the kitchen if he was in it.
When he took his meds he was fairly calm but slept a lot. He got a job at the local grocery store as a bagger and for a short while things were relatively normal. We found him a small duplex and my husband paid for his rent and he used his paycheck to supplement what he got from SS Disability. Of course he didn’t get much when he worked so it was a constant struggle to keep his bills paid. Then he got a girlfriend.
Once he met the girlfriend things spiraled out of control. I explained to her early on that he needed, ALWAYS, to stay on his meds. Of course he stopped taking them. He went to work one day and then just left when he was supposed to be bringing in shopping carts. He was never able to explain what happened, if anything actually did. He just left. End of job.
The next thing we knew he was tossed in jail. When you have someone that is a paranoid schizophrenic, jail is not a good thing. They don’t belong there, they belong in a mental health facility where they can get the meds and the help they need. But he had gotten into a shoving match or something with his girlfriend and the police were called. There were no injuries but the woman that owned the duplex was upset over the frequent complaints of loud noises from him and the girlfriend so he was kicked out of his duplex. Most of these noise complaints were late at night. He is tormented at night by the voices and shouts back at them.
He and his girlfriend reconciled and moved into an apartment. They did of course finally break up for good but not before she had a baby and he became an absentee father. She did not trust him to be around his own child. Sad.
Over the years, well past that original diagnosis when he was 14, he has become worse and the people in the small town he lives in now know him and refer to him as “Crazy Johnny”*. He accepts the name and is in his own world now anyway. I haven’t seen him in a few years now but I have heard from others that there are incidents where the neighbors have called the police because they hear screaming and the police have had to come in and check to make sure everyone is okay. They found him alone. All the noise is him by himself. He is now 30 years old. His diagnosis was 16 years ago. Sixteen years of torment without medication. I think of him often and feel such sadness. His father always felt that I was “picking on him” when all I wanted was for him to have a full and productive life instead of being tormented by the voices in his head.
All of this has been on my mind since the woman showed up at my place in the middle of the night. When the police did finally show up at my house they asked me to keep her there until they removed her son from her residence. The officer also appeared to already know the woman. That isn’t good. He said something to her along the lines of “Well here we go again huh?” When he left to go to her house she told me that the same officer had been to her house when she had to kick out her abusive boyfriend recently. There was something about the way she said it and the way the officer behaved that made me think this was a regular thing with her.
When your life becomes a series of conflicts that bring on repeated visits from the police it is time to make some changes. Some people seem to get stuck in a vicious cycle of craziness where that is their new “normal”. I know because that was how things were living with my step-son. Nightly rants coming from the attic room that was his room when my step-daughter lived with us, then from the second floor when she moved out and he took over her old room. He would be laughing like a hyena……really, I’m serious….a hyena…and then talking and answering questions it seemed. Crazy. My husband would frequently get out of bed to shout up the stairs telling him to “Shut the FUCK UP!”. His brother and my son would both be trying to sleep to go to school in the morning and nobody was getting any sleep. Every night the same shouting and laughing and extreme anger all at the same time. He told us he couldn’t control the laughing and that made him angry so he would shout. Tormented by the voices every night. His rages would sometimes involve hitting walls or throwing knives and darts into the walls.
Fear was constant on my part. He would be laughing and saying “I ought to just shank her….”. Since I was the ONLY she in the house I could only assume he was talking about me. When my husband went out of the house to go to work it was usually just myself and the crazy guy in the upstairs rooms. Not a comfortable living situation. When he was on meds he slept more and raged less but taking the meds was up to my husband. He refused to let me even discuss the issue telling me it was none of my concern and that he would handle it. Legally I had no right to even talk to the psychiatrist or psychologist although they both made a point of telling me to make sure I kept my own meds away from him because he admitted to stealing some of my pain meds to his doctors. After that I hid them.
My husband refused to acknowledge what the doctors had told him about the use of marijuana by a schizophrenic. They told him that frequently the use of marijuana increased the paranoia and psychotic tendencies. He ignored them and continued to give his schizophrenic son pot on a regular basis. He hid it because he admitted that his son had broken into our bedroom and taken some of the pot he had in the bathroom that was off our bedroom. I was already in counseling myself to deal with living with an addict. My husband often claimed that he wasn’t the one with a problem, that I was the one with a problem since he was never going to stop smoking it. Possessing and being under the influence of pot is a felony in the State of Utah and I felt that as parents of teenagers we had a responsibility to show them a positive and good example by not committing felonies. He saw nothing wrong with what he was doing and as for the violence and manic outburst from his son, well that is now all on him. I am out of it but that doesn’t mean I don’t care. I still remember the kid that was my buddy for so many years before the schizophrenia overtook him. It still saddens me but I can now sleep at night without fear that he will finally take action and knife me in my sleep.
As for the hysterical woman and her son……well the police removed him from the house that night, I drove her home then went back to my house thankful that my own Midnight Madness period had ended and I am now blessed with peaceful nights and no crazy relatives in my attic.
* not his real name, changed here to protect his privacy
I am not sure what it is about me, but I somehow manage to attract crazies or people in crazy situations and last night was more of the same.
Night time is my time. Mornings are horrible for me. My Princess and the Pea Syndrome hits hard before noon. Once I have taken my meds the creaking and groaning of my body commences and after a few hours I am able to partially function. I absolutely do not make any appointments before noon unless I am forced to. So I am usually up during the late night hours and frequently go to bed after 3 a.m.
Last night was more of the usual. Frosty was patrolling the back yard, this is a job he takes very seriously and there are some nights that I cannot get him to come back in. He hates 2 things with a passion. The first thing is sirens. He really hates those and will sometimes cry the most pathetic sound you can hear from a ginormous pup like him. The second thing is coyotes.
Frosty is a rescue. They told me that he had been found wandering around out in the desert and he weighed only (hey, he is a tall dog!) 75 lbs when I got him. He was very skinny for his height and was full of parasites. It cost me about $150 to remedy the parasite issue but I love him to death and he adores me and is very protective. VERY. I have a chain link fence around my entire back yard. There is not much behind me but desert brush and a few dirt roads over there is one house. It really is mostly open desert behind me and it is a well known coyote hunting path. I see them often at dusk and early in the morning and they drive Frosty absolutely nuts. My working theory is that he had some run ins with coyotes when he was wandering around in the desert. If he scents them he will start barking. If there are none in the area he will patrol the perimeter of the yard, come in to check on me, then go back out and patrol some more. Recently my next door neighbors acquired a bunch of chickens. Oh joy, not only do they have a weird idea of what morning is (they start crowing at about 3 a.m.) but they are like coyote magnets. The neighbors should be glad Frosty is here or I am pretty sure those coyotes would be having chicken dinner.
During the day he is a couch potato and will either be laying on his love seat or laying on my feet on the floor. He hardly ever barks during the day. He will get excited if people actually ring the doorbell but one look at him and solicitors run for the hills. He is a very intimidating presence to some people just due to his size. I kind of like it that way.
It isn’t that I don’t like people. I do, when I am out and about. I just don’t like them showing up at my door at midnight. Especially if I don’t know them, have never met them or been told about them or whatever. I really don’t know too many people that look at a midnight visitor as a welcome intrusion…..unless maybe a person of the opposite sex with a naughty visit planned….okay, that was my fantasy…sigh….now back to reality.
So I was reading up on some blogs I follow and considering what I was going to be working on next. Frosty was barking his fool head off and I was just about to go out and see if he had something in particular bugging him or if a coyote was just getting too close to the fence.
Knock, knock, knock. Somebody was pounding on my heavy duty screen door at the front of my house. I usually open up my house at night to let it cool down without running my air conditioner. I live i the desert but for those of you not familiar with the High Desert of California, we get some darn cold nights in the fall and winter. Once the sun goes down it goes from 90 to 65 pretty darn fast. It doesn’t usually take too long to cool the house down and I like it a little chilly when I go to sleep. But I am also a bit cautious and even though my front door is open I have one of those heavy duty barred screen doors meant to keep people out and dogs from destroying it.
There is never anything good that comes from a visitor past 10 p.m. in my experience. I found a strange woman standing there. It was pretty obvious that she was very upset and she was visibly shaking. She was also holding a cigarette. Bleh. I thought that maybe she was here to complain about Frosty barking. He was pretty agitated and after She started babbling out her story I realized he had probably been barking because of the turmoil this woman was going through and the fighting that had started a few desert blocks over.
Her story was not unfamiliar to me unfortunately. She began telling me that she lived a few streets over and had gotten into an altercation with her adult son. He is schizophrenic. THIS I understand. My step-son was diagnosed as schizophrenic when he was only 14 years old. I have lived with the heartache that comes when someone you love turns into someone you don’t know and suddenly terrifies you. She told me that he began tearing up her house demanding things that she didn’t understand and cut her phone lines and took her purse. She said he urinated on her carpets and she was afraid for her life. There is something about night time and schizophrenia. It gets worse at night.
She asked me to call for help. I did. I took a chance on her and let her in the house. Normally I wouldn’t do that but obviously this was not a normal situation in any way. I had 911 on the phone before I opened the door and let her in. I also shut my front door and locked it in case the schizophrenic son had followed her. I brought Frosty in and locked the back door as well and we hunkered down waiting for the police. I had a bit of a dejavu feeling and thought of my step-son. He was all I could think of even as she babbled her story over my iPhone to the police.
Mental illness is so hard for friends and family to understand and sometimes the people that need the help just don’t get it. The person that is suffering from schizophrenia is frequently unable to function well enough on their own to get themselves help. It is heartbreaking and it is more common than a lot of people know. It can also be hereditary. This I knew from personal experience. My husband’s ex was also schizophrenic and I had experienced some of the horrible results back when we were originally dating. She would show up at my house in the middle of the night screaming and yelling and was totally irrational. She was and still is, a scary person. In her case she was also a meth addict and had been diagnosed as schizophrenic when she was a teen from what I understand. I’m not sure why she was never hospitalized and given help or maybe she was and I just never heard the details.
My step-son was a sweet kid when I met him at the age of 9 and we were buddies. When I started noticing the unusual behavior he had just turned 14. It is not unusual for puberty to trigger schizophrenia. In his case the worst started showing up when he was at school. He got suspended for stabbing sharpened pencils into the seats of the school bus he rode on when we lived in Las Vegas. It was the odd outbursts and the strange hand motions and things he said that had me insisting that he be evaluated by a doctor. My husband fought me every step of the way. He did not want to admit that there was anything wrong with his son.
At first he was very open with the doctors. He told them that he could read minds and that he heard the thoughts of everybody around him. He thought he had super powers. This was back when the Sci Fi show Roswell was on television. The show centered around a group of alien teens that had landed in Roswell and somehow the show managed to get into my step-son. In the show the alien teens had different taste buds and frequently poured massive amounts of hot sauce on their food. He started eating everything with Tabasco on it. He told the psychiatrist that he thought he was an alien and we were hiding his real heritage from him.
The problems at the school increased. He would suddenly strike out at fellow students thinking that he heard them saying stuff about him. My husband continued to be in denial and I fought as hard as I could to get him help. My husband accused me of “picking” on him and kept saying that he could beat this problem if he put his mind to it. He didn’t “believe in” psychiatrists, psychologists and medications for mental illness. I continued to fight him on his son’s behalf. It took its tole on our marriage.
The older he got, the worse the schizophrenia became. While we lived in Las Vegas I was also fighting for my own life and battling breast cancer. My nights were spent working in a casino and my days were spent grabbing sleep here and there and getting to my doctors and chemo treatments, then radiation and trying to get help for my step-son as well. During this period my own son was beaten with a belt by his biological father and I found myself involved in a court fight when I refused to let him see him without getting counseling himself. He also suffered from mental illness that I believe was brought on by drugs he did way back in the 1970’s. When my son’s biological father showed up for the meeting with the counselor….well they ended up calling 911 on him back then. It is everywhere. So many damaged people from so many things.
I know there were a lot of things that should have been handled differently. I felt like I was battling alone. I loved my step-kids. They were my kids from the time they were 3, 6 and 9. Their mother had nothing to do with them from 1993 on. Our years in Vegas were hard ones for me. There were some good memories from the first few years but once the cancer hit I was trying my best to just keep my head above water. My husband had an alcoholic father that would get drunk and hit him as a child to correct him. He was determined to be the exact opposite of his own father and took the position that anything the kids did was on them because it was their lives and they would learn from their own mistakes. My position was that we were the parents and it was up to us to guide them and correct them. It was a constant battle. I was trying to fight for their well being and yet I was always the bad guy. They thought I was being mean, I was trying to be a good mom and employee and stay alive.
That first year of the big C, my daughter was pregnant and having difficulties with her pregnancy. She and her husband lived in Henderson, a suburb of Las Vegas. We consulted each other frequently and tried to support each other through our mutual doctor appointments. I had kids at home and my step-son’s issues and I was pretty sure I was going to lose my mind as well. I regret not being more open with all of my kids and step-kids about the pain and agony I was going through at the time. All they knew was that I snapped at them over things like getting their chores done and school work and would be cross over that they didn’t understand. At first when we were trying to deal with the schizophrenia the rest of my kids and step-kids thought it was kind of funny. They would tease him and go along with his delusions of his super powers. Even my husband would poke fun at him when he would start telling them that he knew what they were thinking and when he would spend 3 hours in the bathroom….in the dark….in the bathtub…because he thought he was creating fireballs in his hands.
My husband seldom participated in any of the counseling that my step-son went to. He didn’t take him to appointments, I did. Then came the big fight. I don’t know what started it, but we had been having a lot of problems with aggression from my step-son. This is pretty common. Imagine if you had voices in your head constantly telling you that everyone around you was out to get you. He would thrust his chest out and bunch up his fists and push you. When he took his meds things would calm down. But just getting the meds into him was a war with my husband. I had to leave it to him to get his son to take the meds because I was heading to work late at night when he needed to take his meds at bed time.
All I knew later was that my step-son had started getting aggressive and supposedly swung his skateboard at my husband. There was a knock down drag out fight and my step-son ended up with a black eye and was thrown out of the house. He was 17 by then. He moved in with his girlfriend and her mother and out of our house. I was horrified by the whole thing but had no control over any of it.
I had multiple conversations with the girlfriend’s mother who herself believed that he shouldn’t be on meds, he needed a good church. This was along the lines of what my husband believed. He was Catholic and thought that maybe a priest could exorcise the demons that were tormenting his son. I cried a lot during that time.. We were in the process of a job transfer to Northern Utah for my husband and I was still trying to recover from all of the medical treatments and get my health back. So we left Las Vegas and moved to Northern Utah, leaving my step-son behind.
Don’t you just hate leaving messages that never get returned? I have been attempting to get someone in my neuro surgeon’s office to return my call for several weeks now. Not the surgeon himself mind you, just someone, anyone that can answer a question that I have.
My surgeon recommended a drug therapy to me that would increase the strength of my bones prior to me having a much needed surgery on my lower back. A recent bone scan revealed that I have osteoporosis in my lower back and left hip. This is a serious concern when facing back surgery due to the possibility that my bones might fragment during surgery. That does not sound like fun thank you very much. I would rather avoid having that happen.
When I met with the surgeon weeks ago (on a Saturday!) he recommended a newish drug that unfortunately is not always covered by insurance and even when it is covered is usually only partially covered. That figures. I would have to have a pretty big ladder to climb up to poverty level so anything that requires money out of my measly disability payment is kinda out of the question unless my soon to be ex-husband starts paying me the alimony the judge ordered (sigh anybody know any pro-bono attorneys?) yeah that is not gonna happen. But the surgeon said they have set up a special clinic within his office wherein they work with the drug company that produces this new drug and work it out so the patient doesn’t have to pay the uncovered part. Woot! Sign me up! He gave me the information on the drug to read up on and to talk to my regular doctor about.
Here is the kicker and why I am so annoyed. In the fine print it says to “tell your doctor if you have……” and then lists a long list of things. One of the things on there is radiation treatments. Well poop. What does that mean exactly? Does that mean that if I have had radiation treatments I cannot take this drug? Or does it mean that precautions need to be taken? I am a breast cancer survivor and had 7 weeks of radiation treatments in 2000. These are simple questions. That is all I need to know before I make the decisions I need to make.
My first call to ask these questions was on the Wednesday following my Saturday appointment. I managed to speak to a real live human and detailed my concerns. She said she didn’t know and then told me she would pass the message on to the nurse practitioner that ran the clinic within the surgeon’s office. Apparently she is only there on Tuesdays. Of course.
Three Tuesdays have now come and gone. I am going to be leaving on a grand adventure of a trip in 3 weeks that will have me out of the area for a couple of months. The surgeon was agreeable to putting off my surgery for a bit while I build up my bones but it sure would be nice if I could start working on that! After yet another Tuesday wherein I left yet another message on yet another voice mail…….well I am getting pretty darn disgusted with the whole process.
Complaining to someone’s boss is not something I like to do. I’ve never been good at standing up for myself, standing up for those that I love I do in an instant. I will be right there on the front lines of any controversy involving my loved ones and protecting them like a mother bear, but for myself I hate to rock the boat.
This time I think I must, but I don’t have to like it.
Fog followed my every step today. Living in the desert there is rarely a day that involves the heavy grey mist that blocks your vision and forces you to slow your every move lest you run into something else. Today was no different as far as the desert surroundings go. The skies outside are clear and blue. The fog is inside my house, in my head.
It is called Fibro Fog and it is the bane of fibromyalgia sufferers everywhere. Everyone has those moments where you walk into a room and can’t remember what you walked in there for, but this is like that amplified. Every step I took felt like I was walking in molasses. Walking to the refrigerator found me standing there staring blankly in… What? Why was I there? This happened all day long. I overdid everything yesterday. I managed to get my creative project done and did a little bit of preparation for another project that I planned on starting today, but when today started it was all I could do to get the blog posted about my project from yesterday and I had already composed most of it last night.
My intentions for today was to start the mosaic pot to go inside the little painted chair pot holder from yesterday. I had already used my tile clippers and had separated them into little containers all ready to glue and grout for my little pottery piece. My brain couldn’t follow through. I could barely manage to make breakfast for myself. Wandering around my house to gather my supplies was torture. Room after room puzzling over why I was there, where were my supplies? What the HELL was I doing?
At first when I started having these foggy days I thought it was from the chemo I underwent for breast cancer. There is something I have heard referred to as chemo brain that happens to people that undergo chemo. The information obtained from the women’s center talked about so many possible side effects said that these all went away with time. Well hell, this never went away.
For years now I have struggled and sometimes feared that I had early onset Alzheimer’s or a brain tumor or something equally scary, really it is sometimes that bad. As a child wiz kid my memory was always something I took for granted. Phone numbers, addresses, trivial facts all stuck in my brain for YEARS. Suddenly I was struggling with everything. You know that phrase everyone likes to joke with “Of all the things I have lost I miss my mind the most” well that is me.
I know I am not alone. I belong to several fibromyalgia support groups online and am always looking into studies being done to find a cure. For the record, it is very hard to find a cure for something that they have not even discovered the cause of. Many people go through this and we all find ourselves wondering if we are doomed to go through this forever.
Daily pain is hard, any chronic condition is difficult for the person going through it. Careful use of pain medications can ease some of the pain but it never goes completely away for me. The chest pains from the costrochondritis is the worst pain ever, it feels like a heart attack and is mostly on the left side of my chest and my shoulder. Toss in the fibromyalgia all over your body pain and the pain meds are a vital part of keeping me relatively sane. The pain medications can make it hard to think sometimes and I am always conscious of the dangers of actually becoming addicted to them and there is controversy over the effectiveness in their use with fibromyalgia. Some studies even say that it may make fibro worse. Personally I find myself unable to think or function when my pain levels are high so I use the meds carefully and walk the tightrope between dependency and addiction.
The fog set in before I had even taken my meds so there was little doubt that I was going to have a foggy, foggy, fibro day from hell. Yesterday between coats of paint on my little painting project I sat and broke down ceramic tiles to smaller pieces to create a mosaic masterpiece from an old terra cotta pot. Normally I don’t eat first thing in the morning, some meds I am supposed to take on a daily basis before eating, others say take with food. Since my brain was not working well I decided it needed some fuel. It didn’t help.
I continued to struggle for a few hours but just could not get myself functional. Every task I started is still sitting waiting to be completed. The only thing I had any success with was taking a nap. My nap lasted 5 hours and I woke up exhausted all over again. The majority of people that have fibro also suffer from sleep disorders. I have a C-pap machine that I have to sleep with and just writing this is agony. My body is aching and I feel as if I have run a marathon….to make matters worse I keep falling asleep while writing this. Yeah, so much for that 5 hour nap. So this is me being human and accepting that for now at least this is my lot in life. The fog will eventually lift for a bit and I will get back on track.
Now it is time for me to give in and take another unwanted break in my quest for creativeness and sleep yet again. Even as I write this I am falling asleep sitting straight up. There is no quick fix for fibro fog you plod through and hope the following day will bring some clarity. Life is a Journey and someone else is holding the map.
For my third day of my 100 Day Challenge I wanted to do something involving color and my gardening together. When I was planting my cactus and succulent pot the other day I noticed that the majority of empty pots and containers for planting were either plain terra cotta pots or rather dull looking plastic pots in dark green or flat black……bleh…boring. I have several different plant stands outside made of wrought iron painted the typical black and one painted white…….again boring.
I love color. Bright BOLD colors My kitchen counter is black, as is my sink but my small appliances are bright and cheery and the revolving utensil stand is filled with spoons and spatulas made of all the colors of the rainbow. The bright splashes of color make my eyes happy. When I walk in my kitchen and start using my utensils I feel happiness. Color me happy!
I have a small wrought iron pot holder in a flat ugly black but it is in the shape of a cute little chair. Some of the paint had worn off and rust was poking it ugly head through the paint so I decided my boring terra cotta pot and flat black paint are going to go. I put on my gardening clothes (you know, the old t-shirt with holes and a pair of shorts) and got to work.
When I moved back to California a few years ago from Missouri, my wonderful mom had raided my step-father’s workshop and gathered together stuff she thought I might need in the house that I am buying from them. She packed in paint brushes, tools, screening materials, a saw, a rake, a shovel, well you get the idea. A little bit of this and a little bit of that. I remembered that there was a box that had several cans of spray paint out there somewhere in my garage. I braved the dark corners of the workbench and it’s resident black widow spiders and found a can of spray paint in a lovely aqua.
If you want something to last you have to put a little effort into it. That goes for life as well. I first scrubbed the dirt off the little chair and then spent some time sanding off the rust that had settled in. All of that takes time and all the while my mind is considering how life is a lot like that little rusty chair. In our fast paced society we are coming to expect instant gratification for too many things. We want our food NOW so we jump in a car and drive through a fast food establishment and sometimes don’t even take the time to sit down and eat there, we are in such a rush that we eat while we drive, always multi-tasking in our efforts to get what we want and get it now. The younger generation takes for granted their possessions and the technology that is handed over to them and are rarely found doing any kind of manual labor to achieve the things they want. It too easy to run out and buy something new and shiny (and usually plastic) to replace the old and rusty rather than to put some work into it and make the old into something new.
All this need for instant gratification results in a certain numbness to the journey. We hook ourselves up with wireless headsets so that we can make phone calls while we drive, we use our computers while we watch TV and more and more you see families in restaurants devoting their time to small electronic devices instead of talking to each other. As I continued to sand my little chair and then paint it I realized that I too had been spending far too much time glued to my computer instead of actually doing things.
The process of cleaning, sanding and painting the little chair took a bit of time as I also took time between coats of paint to soak and then scrub some small pots to use for the following day’s project. I felt happy to be doing this little project but as I sanded and painted I also became even more aware of the things that had been taken away from me by my body’s limitations. I was exhausted and the position I had to stand in to spray paint the chair was causing my back issues to kick in. Pain was radiating down both legs and my right foot was starting to go numb.
Fibromyalgia together with my herniated disks and my chest pains has kept me in bed on many beautiful days and sometimes the depression takes over and frustration sets in. I have no control over these things other than to take medications to hold the worst of the pain back and to avoid positions that cause extra pressure on my damaged back but I can do my damnedest to keep it from beating me. Creating something new from my old rusty pot holder made me feel GOOD emotionally. That feeling of accomplishment helps me to combat the feelings of helplessness that come with battling my health issues.
Quite frankly the activities of the day exhausted me to the point that when I was done with the painting of the little chair and I sat down to write this I fell asleep in my recliner with my laptop on my lap. Due to the disks in my back I can no longer sit at a desk or even sit comfortably in most chairs. People that suffer with fibromyalgia have problems sleeping, getting a “good night’s sleep” is a rare occasion for me so I am often exhausted even when I have just woken up. Too often in the past I have pushed myself to do whatever it took to accomplish different tasks and in the end all I did was hurt myself. I am now giving myself permission to be human and rest when I need to rest instead of trying to be Superwoman. I sometimes wonder if women are the ones that are more likely to have fibromyalgia than men because of our habit of rushing to take care of everyone and everything before taking care of ourselves. I am trying very hard to put my body’s needs ahead of what my habitual tendencies are so instead of pushing even harder to finish this blog post on the day that I did my little project I gave myself permission to SLEEP.
It is now the following day, I accomplished my creative task of making a beautiful little chair pot holder and will now work on the little pot that is going to go in it. If I get tired while doing it I will nap, I will eat or do whatever it takes to take care of myself. In some ways I am like a toddler just learning to take care of itself. All those years of worrying and carrying for children and the men of my life has left me bewildered on this whole taking care of myself thing. I am too used to pushing through the pain and thus harming my body in the long run. Baby steps, now it is time for ME.
The process of creating something beautiful gives me such Joy and Happiness, yes I capitalized those because they are so very important at this stage of my life. Sometimes it is the little things that sustain you and help you get through the tough stuff. Had I sat around the house and not done anything but surf the internet and watch videos about cute little cats and dogs I would have gotten through my day just focusing on my pain. By creating something I have something solid to hang on to, proof that I matter, that I can do something useful and it takes my focus away from the pain and exhaustion. I am still tired but now I have a reason for the exhaustion and I am happy.
Way back in 1994, I was told by a very nice doctor at a local Community Hospital, that I had three herniated disks in my back and would need surgery to correct the problem. Being a single mother and not a big fan of doctors and hospitals in general, I thanked him and walked out the door. I have been dodging the bullet ever since.
The problem with dodging bullets when it comes to your health is that one missed step puts you right back in the path of the bullet. You would think that anybody that managed to dodge bullets for nearly 20 years would be a wiz on the dance floor but hey, that would be silly given the condition of my back.
Back then I had been expecting the diagnosis since this wasn’t my first experience with a herniated disk. The first time around I had worked hard to get medical insurance and had a wonderful doctor named Disney who did magical work. 😀 That time around it was nearly a year of agony wiped out nearly instantly, but it had only worked for about 3 years. One disk is not nearly as complicated as 3 so I soldiered on and continued to dodge the bullet.
This is something that women tend to do in their lives. They put their health on the back burner of life and rush around caring for their husbands, children, jobs, houses, pets…..well just everything but themselves.
Over the years I have had quite a few therapists that have helped me deal with all the issues life keeps throwing at me. One of them recommended a book called “When I say No, I feel Guilty”. I read the book, briefly tried to say no, then continued running around trying to make everybody else’s life easier and more comfortable while continuing to dodge those health bullets of my own.
I have had a lot of health bullets to dodge. A LOT. In my opinion my share of health issues seems to be abnormally large. Breast Cancer, Fibromyalgia, Costochondritis, Arthritis, Herniated disks, etcetera, etcetera. When you are dancing around trying to dodge that many bullets, you are bound to make a misstep and take one, especially if you have a bad knee to go with the bad back…..makes taking steps in general a little tricky.
All this dancing about dodging these bullets is tiring. Finally, I missed a step. Although over the years I have had more than one rough patch dealing with my back I always managed to push it back and frankly some of the time it was just plain orneriness that kept me from succumbing to the pain. I’ve learned to not stand too long in one position (like at the sink doing dishes) or to use the vacuum for any extended periods. Quite frankly there are a lot of things that must be avoided to dodge back bullets and after 20 years I am an expert dodger……..kinda.
It happened innocently enough, a friend came down from Utah to visit me on his vacation and we spent a day playing tourist at Olvera Street in Los Angeles. He is a young guy and like many young guys he overcompensates with his vehicle. He has what I call a Monster Truck, one of those 4 wheel drive trucks that is jacked up to the sky and is impossibly difficult to get into and out of for us less than limber oldsters. We drove and bounced from my place in the desert to Los Angeles and I felt the first twinges of a less than happy back. We parked the Monster in the parking lot at Union Station and I stared down at the ground so very far away and jumped. Holy crap, I stuck the landing and jolted both my back and my knee. Then we proceeded to walk from there to Olvera Street and Chinatown for lunch………and then we walked back.
By the time we reached Monster at the end of the day, I was on my 3rd dose of the heavy narcotics that my doctor prescribes for my various ailments. Refusal to take my meds for pain is a common thing with me. I fear becoming “addicted” rather than depending on them for relief from the otherwise crippling pain. So for me to take 3 of them before the day is done is quite unusual.
Suffering from fibromyalgia as well has taught me that there are good days and bad days and that I, as well as many others with fibro, have a tendency to over do things when I have the rare good day. This had started not as a good day, but not terrible either. But the walking, oh all that walking………not the smartest thing I have done. I don’t want to be sick and I don’t want to have a 50 something body that feels like it is 80, but I do.
When I overdo my day (like going grocery shopping) I know that I will most likely have to spend the following day in my recliner or in bed. It is what it is. Since my friend was leaving the following day to head back up to Northern Utah, I powered my way through his visit and laughed and had fun all the while saying to myself “Oh Shit!” really, it was like a mantra in my head……….Oh shit, shit, shit………walk, walk………..shit, shit, shit.
Four days after he left I was still in bed. Every step was agony, sitting in my recliner resulted in numbness down both legs and sitting on the toilet practically made me cry. That bullet finally caught up with me.
It has now been a few months since the bullet hit. I have been x-rayed and scanned, both an MRI and a bone scan. I have a very nice surgeon who is proposing that I undergo a laminectomy on my back but not before I undergo a new therapy for strengthening my bones. You see the bone scan revealed that while I was dodging the other health bullets, my bones were busy disintegrating. Not all of them, just my left hip and lower spine (eye roll).
As a last hurrah before I begin treatment on my disintegrating bones in January, I am going to travel across the country, dodging more bullets and making more memories. Because I am a woman and that’s what we do, we soldier on and dodge the bullets life shoots at us.