I decided to with my new Arthritis medication working fairly well, I would try to reclaim some of my “missing life.” We all have parts of our lives missing. Things we can’t do, that we used to be able to do. I’m not talking about playing the violin, unless of course you were a violinist before your arthritis struck, but those things we used to commit to do without even thinking.
I used to give talks. Talks on education. Talks on art history. Talks on teaching art, viewing art, buying art, valuing art….
I also gave talks on skeptic education, such as Bigfoot, UFOs, alien abduction and had a specialty in New England paranormal history.
When I was asked to give a talk before I was always honored and happy to say a resounding YES. YES, I would love to travel to where ever to share what I know. YES, I love putting together a fun power point. YES, I love answering questions, and I’ll gladly show and even contribute snacks.
The only thing I needed to check was my calendar. I would travel all the way to TAM at Las Vegas, or drive 6 hours to my favorite talking venue at the Central NY Skeptics in Syracuse. If the calendar was clear, I was ready to go.
I haven’t given a talk for over 3 years. That’s because what was “No problem” became “Big problem”. I was mortified when I had to cancel a talk at CNY skeptics just days before I was to speak as I needed surgery on an artery in my head. This was the beginning or a long period of diagnostic testing to discover I was suffering from two types of Arthritis. There is nothing worse than letting down your favorite group, and to do so at the last minute was especially distressful.
I’ve had to confine my skeptic education to blogging. It was only recently that I decided I try speaking in public again. I’m on a new medication that is in a testing phase. My response has been good. Not “I’m cured”. But certainly helpful enough that I have gained back some of my courage. I could perhaps, do a talk.
As a skeptic, I knew if I could get a gig as one of the “Mystery speakers” it would be an invaluable opportunity to teach an audience ,expecting woo and the paranormal, about skepticism. The skeptic educator in me had to ask “Are you up to this challenge?”
I had to think about the changes on this new medication. Did this medication give me the freedom to commit to something, for just an hour, or would I risk letting the library down if I were ill?
My old medication gave me the feeling I had become someone that just basically had turned from a human being into an illness.
The illnesses ruled my life. I could plan nothing. My bed was the only thing in my life that was consistent.
This is one reason I volunteered to try a new off use medication. My doctor asked me as he could tell the methotextrate was making me depressed. The other Rheumatologist at the practice is a firm believer in Methotextrate. He refuses to try anything new, because he contends “We know the history of Methotextrate. We know all the side effects. We know that it helps patients. I won’t take a chance with my patients as guinea pigs.”
My Rheumatologist is young. He’s the newbie. He graduated from the school on a tropical island. He treats not just my illnesses he treats my whole body. Including my mind, which was in a critical state. I volunteered for the new medication because I have adult children, no financial need to support anyone, and I was desperate for that one thing that keeps all of us going… HOPE.
The new medication gave me enough energy to commit to ONE THING each day. Nothing big and timing was important. But it did open up life for me again. I wasn’t just my illness. I can now get a haircut. I can commit to a time and appointment and get a haircut. That’s huge. I can go shopping for about an hour. Give me a cart to lean on and I might make more than one store.
So I committed to the talk.
I had a wonderful time at the talk. I hope the audience enjoyed it and learned a few new things. I was in a bit of pain as I had to stand for the entire talk. That’s because a podcaster was recording the talk.
I made my first mistake.
While I can commit to something, I can’t do something like I used to. Standing for an hour was very painful. I thought too late to ask for a stool. I needed to be near the microphone, so my plan of just sitting was OUT. Also, it is important to be seen when you are speaking. So asking for a stool is on my list of things for any future talks.
Then afterward I agreed to do an interview with the podcaster. That was fine, especially as I had a friend help me with the interview. He knew a lot of answers I did not know. But, that was a second hour. Finally I hung out with my friend a bit. No problem but I was fading quickly. The standing for an hour had taken a toll on my joints. Flaring was happening.
The next day, I wasn’t able to do anything. Well, I did do a lot, I was icing joints and feeling sad that my foray into the “real world” was a failure. It wasn’t, but I missed an important appointment because I was in too much pain to keep it.
If I had used a stool, if I had limited my time after the talk, and if I had expected that naturally there is always a price to be paid for any activity, I would not have felt so upset with myself. The point is I can still do a lot of things I used to do, but I need to do them differently.
I also need to know, I’ll need a day of rest afterward. It’s not making the entire Universe, but my body demanded a day of total rest after my exertions. No amount of “will power” could overcome the pain and exhaustion.
So, can we do things we like to do? Of course. Will we pay a price? You bet we will. Does it mean we give up and never take a chance and just stick to our schedule of “what works” and causes us the least pain in our lives? That’s up to each person.
I wasn’t ready to commit to another talk until I had fully recovered and thought for a bit. Was the pain, the entire day after “wasted”, worth the feeling of being productive and educating others? Maybe not the day after, but the week after I truly felt it had been worth the pain.
In other words, I’m open to speaking engagements again.
We all find inspirations that help us make it through our chronic illnesses.
Sometimes that inspiration can be another person suffering through their own chronic illness.
First off, let’s admit the “Someone else has it far worse off than you do.” comment never makes anyone feel better.
In fact what happens is just the opposite. You feel GUILT.
Let’s not even bother taking a poll here to agree, we real dislike the “I am always cheerful and happy” bloggers and you tubers out there with chronic illnesses. Don’t even get us started on the “I gave up gluten and now I’m FINE.” people.
We all find people to inspire us and that we come to admire for having ,what my grandmother called, “Grace under pressure.” They are real people, dealing with illness everyday, and they help inspire us to “keep going.” They cry. They are afraid. They pick themselves up one more time than they fall down. They find joy in today, as there might not be a tomorrow.
Yes, they are religious, but I would never put anyone down for using religion to help them through a terrible illness. Many of my readers I know are Atheists, but also sometimes forget, many of us use our faith to help us through tough times. Faith is something that does help me along my chronic illness journey.
The thing I admire about the Frey family (husband Peter, wife Mary and service dog Ollie), is that while they have FAITH, they also believe in modern medicine. They don’t expect God to cure Mary of her Cystic Fibrosis. They don’t even expect modern medicine to cure it. But, they are at best, hoping that Mary will live for as long as possible (I hope she does too). They educate and inform the rest of us about life with CF.
It’s a tough life. Mary devotes over 2 hours a day to self care. She wants to keep her lungs healthy for as long as possible. Despite the incredible medical advances, including lung transplants, most CF patients do not make it to age 40. That’s the top end of what she is looking at. It should be noted, I learned that a lung transplant does not cure CF. It’s more than just lungs, and for anyone interested Mary and Peter have some great educational videos on their you tube site.
Yep that’s a rule. My worst days, when I am in bed, depressed, despondent and in severe pain….surrounded by ice packed joints and having come back from getting the dreaded steroid shot…I make a point of going on You Tube to find a funny cat video to laugh at. Everyday. Laugh. They remind their viewers to do this, and it is pretty darn good advice.
However, one of the best lessons I learned from Mary was from a recent video. CF patients go to the hospital a lot, and Mary was again in the hospital. Peter is out walking Ollie her service dog, and Mary was alone.
Mary was sad. Her port, which allows the hospital to deliver medication easily, was hurting her. It was scary. Replacing the port is an operation, and you could watch Mary’s fears and thoughts overtaking her ability to deal with the reality of life with CF.
We all have been in this spot. The “I am tired of being ill and constantly having to worry about what’s going to be needed next.” The endless visits to physicians, hospital stays, the medication juggling, and the plain old fear. Mary cried.
Then at that moment, she looked out the window of her hospital room and saw a life flight helicopter landing. She turned to the camera, her tears stopped, and said “Today is the worst day of someone’s life.” The timing was sadly perfect.
In that moment, she remembered, life is very hard for all of us. That while she was afraid of her potential port surgery, and I think also just overwhelmed by her situation, she took a moment to reflect, “It’s not just me.” Someone was right there having the “worst day of their life.”
One great thing about this blog is that it reminds me, we are not alone.
Everyone is struggling.
Our condition is not just tough on us, it’s tough on our families and friends. But, we always have to remember, life is tough. There is no real “normal”. The older I get the more I learn, everyone has something in their life they are dealing with. In fact, if you only have ONE THING that you are dealing with, that’s an exceptionally lucky life.
Mary is a happy person. She has a fabulous support system with Peter and Ollie. She has a CF support team that seems considerate and on top of things. She also has chosen to share her CF life with others, so that she can help educate us about CF. But perhaps what she didn’t intend was showing us her own education.
Listening to Mary and Peter, you see their growth. They will sometimes say “We didn’t know this.”
You see a very young couple dealing with a very serious disease. They are learning together. I know my husband and I work as a team, sometimes poorly it should be noted, to deal with the pressures that come not only from my own illness but that of our disabled daughter. It’s better with a family, but in some ways is also harder. Communication is the key. What can I do to help you? What is “too much” and what is “too little”? How much can I handle and when do I need to admit I can’t handle things?
By watching the Frey family, I learn what they learn.
But the lesson of the helicopter (as I call it) has been one of the best lessons yet.
When I am in the depth of despair, I have to remember “Someone is having the worst day of their life.”
It doesn’t make my day better, but in a way, it reminds us that everyone else isn’t walking around having these amazingly normal lives. Also, at any moment, anyone’s life can change. It can be for the better or for the worse. But there is only one thing in life that is certain, uncertainty.
Also, the helicopter lesson reminded me how wonderful we are as a species.
We spend huge amounts of money to help take care of each other. This doesn’t make sense from an economic standpoint. One could say that the hospital makes money and the helicopter pilot makes money, and certainly the drug companies make money. But, the effort we have chosen as a society to help those needing care stay alive comforting to me.
I thought, watching the helicopter land “These people, flying that helicopter, caring for the patient, everyone at the hospital, the nurses, the doctors, the technicians, everyone chose to go into health care.” These people were inspired, most not by money, to study and educate themselves in a profession where they help others. My GP doctor jokes “Every doctor has a batting average of zero.” Medical care is not always the most uplifting of professions. People suffer, they are in pain, they die. People still chose to do this for a profession.
Mary does her hard work, the PT and the vibrating vest and the medications are a full time job. Peter does his part, supporting her but also letting her cough and not asking “are you OK?”. He is wonderful as he carries on as if “this is normal”. It is normal life for them. Mary’s never made to feel like a “sick person”. Instead she is a “person with CF.”
I love how Peter often just gives a shrug and says “This is life with CF.”
It’s not “This is life with someone that is really sick, and things are not normal at all, it’s just SO DIFFERENT.” No, he’s just “This is LIFE.”
One criticism is that Peter seems to ignore Mary when she is having a coughing fit. He is not ignoring her. That’s just “life with CF.” He will sometimes pat her shoulder, but mainly he is there. He never treats her like she is a SICK PERSON. That’s one good lesson for anyone caregiving for someone with a chronic illness. Don’t act like life is “not normal”. This is normal for someone with a chronic illness. No one wants to feel like a patient all the time.
So, yes they are showing mainly the upbeat times. But since the videos are daily, you get a real picture of life with CF. Warts and all. Plus, you admire how a young couple, obviously without much money, works hard to make do with less. They find such happiness in sunsets, that I started keeping my eye out for “beautiful skies.” I now take a moment to look at the sky. It’s just a moment, but it’s a moment of happiness I did not have before.
Many of us suffering from chronic illnesses are heartbroken over the death of Prince. Most of us are fans of his music, others also love his ascetic and the mystic of the man that choose to live in Minnesota, not Hollywood.
But most of us are heartbroken as we depend on opiates to help us stay pain free. Because we know Prince didn’t die of opiate use, he died from breaking the law. He died from opiate mis use, which is a crime.
The criminals are keeping so many of us from being able to easily get a drug that we have used safely for years. In my case, I’ve had almost 10 years of opiate use to get me through pain that otherwise would keep me bed bound. Others that take opiates are in end stage cancer, and it is the only thing that works, allowing them more time to enjoy their families and even travel a bit and do those things they love so much.
People with severe arthritis and chronic illnesses in the past were confined to lives of horrific pain. The drugs used to treat in the past, were often also opiates. An older doctor friend said that “They worked well, before morphine and other pain killers, those wounded on the battlefield were doomed to often die of shock from their injuries before we could get them to a hospital.” Opiates help countless others recover from surgeries, that before modern use of opiates would mean the surgery could be successful, but the pain control not, and shock would set in.
When I had a severe case of diverticulitis, the pain was so horrible that in the hospital I cried in pain for two days, unable to even watch TV or read a book. The staff assured me I was getting as much pain killer as I could, and that soon the antibiotics would work. This meant I could have the surgery that would save my life later when my intestines were not suffering from an extreme infection. While I was in pain, I was also comforted knowing that I was undergoing a very dangerous surgery under much more safer circumstances without the infection. The only thing allowing the delay were the extreme pain medications.
So, what about those of us that take opiates?
Well today opiate use is under attack by law enforcement and various states. They see this as an epidemic. They also blame doctors. They are “overwhelmed”, or should I say understaffed and undertrained. The same police that shoot someone as an over reaction to their fears of being hurt, are the same people claiming the only cure for this epidemic is strict enforcement of laws designed to make it harder to get these drugs.
Sadly the only people being punished are those that really need these drugs to function. One friend told me that she saw her grandmother only in bed, since her arthritis had no good treatment. Eventually she said her grandmother simply stopped eating, a slow and miserable form of suicide. No one in the family encouraged her to eat, as they knew her level of pain was horrific. There were no “home remedies”, those snake oil medicines that were mostly cocaine or morphine, there were just doctors that knew some forms of arthritis were a curse, as feared in those days as getting cancer.
So, how are opiates different today?
Well for one thing doctors, not the police, have taken great steps in solving this opiate crisis. My opiates come in a safe long release form. That means, I can’t get a punch from it. Over 12 hours it is slowly released into my system. I feel the pain ease away, and it takes about 20-30 minutes before I can even walk in the mornings. I keep the medications by my bed, ready to be taken. What happens if I take two? I would suppose I get a bit more of a buzz, but it’s still super low release.
Still, what if someone steals my tablets? They will be very unhappy as they won’t get much of a punch. In fact the slow release has little chance of addition. Also crushing the tablets to snort (which is a favorite method for a quick high) won’t work with these pills. There is an additive that means if crushed, cut or broken, the opiate won’t work at all. These new pills, developed to help those with a long term pain need not become addicts, is never mentioned by the media.
My own doctors are appalled at the law enforcement/political plans to deal with this “crisis”. They feel left out of the process. As it is, laws have been passed that I can only refill my prescription on the day it runs out. I have to be out of drugs before I can refill. This often means if there is a snow storm or some other reason I can’t get out, I can’t get my drugs. This also means I can’t drop one or lose one. I dropped one the other day, and ended up having a friend over to tear apart the room with me (I can’t bend over well) to find it, where it was found having rolled under the bed and into a dust bunny. My friend was “throw this out, it’s all dirty.” I was “I have to take it.”
Next up are the laws that say you have to have a paper prescription. So you time everything correctly. Each month I have to go get a paper copy of the prescription from my physician who has never had one problem with her patients and opiates. None. But this applies to all doctors. Instead of going after the criminal doctors, and they are out there selling everything, not just opiates, the police have decided all doctors are guilty. So, often I am driving, or most often someone that can still drive well, to pick up the paper prescription.
A horrible situation arose when I had my prescription ready to go on a Friday, and found my physician had forgotten to sign it. It didn’t matter that for years I have gone to this same pharmacy and filled this same prescription, I had to have a real signature. The doctor had simply forgotten. Her office was closing in 15 minutes. I could not physically drive there and back (her office is about 30 minutes away). She was leaving for the weekend to see her child at college. A fax was no good. This had to be a physical signature.
Finally, after much calling and “I know this law is so stupid”, the head pharmacist and
someone at the company that owns the pharmacy, took pity on me. They knew me, by first name, they knew this doctor had NO issues or problems. She promised to send one over via mail overnight, but for that night, I could have one pill. One pill. Everyone involved knew this was ridiculous, but they didn’t want me to have to spend the night in pain or as would probably happen, having to check into the hospital.
Massachusetts tried to pass a law where anyone on opiates had to go to the pharmacy every 3 days for a refill. Now when I put in my prescription, I have to show ID. I have shown ID being driven by my husband or a family member, while in my pajamas and robe and surrounded by pillows, because if I am flaring, I should be in bed,not in a car at the pharmacy drive through.
My own doctor was livid about this, wondering how end stage cancer patients would enjoy spending their little remaining time driving between their doctors office picking up a paper copy, and then sitting waiting for their pills at the pharmacy. She said “Patients with real needs that had never abused their opiates would spend all their time going back and forth.” You have to show up in person, no matter what your condition, but once a month I can do. Every three days, that’s impossible. But the police and law enforcement were all in favor of this.
That’s the problem, because Prince was given opiates for his hip problem. But the opiates did not kill him. He died as he had people that helped him abuse the drug. If it weren’t opiates, it might have been something else. People say “I was addicted.” No, as with many drugs, opiates are hard to get off of right away, and you ease off with the help of your physician when the time is right. Just try not taking, cold turkey, almost any medication. It’s tough. I know someone trying to get off of her Paxil as she read it can cause dementia later in life. She tried to quit “cold turkey” and was a complete mess. She had to be eased off of it, and another drug which she hopes is safer, introduced.
What killed Prince were his friends and others that got him those opiates. Perhaps he had his staff claim they were in pain and needed short term opiates. These will give you quite the buzz. Money can buy a lot of things. Including doctors that will sell you about anything, including Ritalin to snort. No one is saying “let’s stop using Ritalin.” Paxil does indeed seem to cause an increase in your risk of dementia, as does Tylenol. No one is calling for those to be more regulated. Indeed, one of the most dangerous overdoses anyone can take is half a bottle of Tylenol. There isn’t much that can be done for the liver damage and people that were more into scaring their family with taking an over the counter medication find themselves dead. Mix in some alcohol and you are in for real trouble.
Yes there is an opiate crisis. I know this as I have a handicap tag, not a license plate. Why? Because if you have the license plate, people will break into your home knowing you have a likelihood of having MANY drugs (not just opiates) they can sell. Also I was asked to always use the drive through at the pharmacy. That is because an elderly couple that got their medications locally (at the pharmacy I use) were followed by someone as they left and robbed at the post office in small Spofford Village. Yes crime is around prescription drugs.
But there is also crime around heroin, marijuana, cocaine and other drugs.
There are also cheaper drugs just waiting to fill the void in the United States. Currently Thailand has a inexpensive pill that helps workers put in long days. It’s a necessity for many to make a living. Ya Ba is sold for about $3-4 a pill. It’s a super cheap high, first popularized by long distance truckers. It’s spreading throughout Asia, as it’s a way to keep going even when you are exhausted. It also is a way to party and have a social life after a long day of work. Once this pill invades the US, it will make opiates look like a joke.
The problem isn’t that doctors are prescribing this, it’s that many people do have an addictive personality and also have the money and means to get more of this drug. When they are taken off the medication, not slowly and carefully, they often turn to heroin on the street as it’s the closest they can get. It should be noted prescription opiates are not heroin. Also stolen opiates are often crushed and injected, they are not at all what the person legally taking these drugs is experiencing. If anything, doctors need to know their patients, and also make sure that there is proper care with withdraw from the drug.
When celebrities like Jamie Lee Curtis claim they were “addicted” to opiates after a surgery, what they mean is “I had a really hard time getting off of it, as I possibly would with any medication that is very strong.” She was not on the streets seeking a high from heroin. Anyone that has suffered from Depression, as many with chronic illnesses have, knows that the switching of medications to determine the correct medication for treatment can be torturous. It’s not just opiates that are difficult to do without.
But, politicians and law enforcement, they see all use of opiates as dangerous. The punishment falls on those least able to follow these new restrictions and rules. They don’t consult with physicians and surgeons and hospitals about all the good these medications do for so many, who do not abuse the drug. There are no good alternatives for many of these medications. Punishing the patient is not the answer. Punishing the physician who has to tell the patient, “I have to use this other painkiller that does cause terrible stomach pain, I’m sorry.” What they will do with patients after surgery is not known.
It’s easier for someone to buy and abuse liquor, and indeed we rarely read about the epidemic of alcoholism, than to get opiates. If you are Prince and you have friends and money, you can get this drug. But the drug itself did not kill him. His dependence and unwillingness to find treatment, did. It could have been alcohol. It could have been cocaine. It could have been Ya Ba. As long as there are substances that can alter our physical state, they will be used for both good and bad.
Prohibition did not work. States are figuring out that decriminalizing marijuana is a good idea. Even making it legal seems to be working well for Colorado. California has it so you can sneeze and get the medical use license.
Opiates are the drug du jour. They do a lot of good, and yes have cause a lot of harm for some that have abused them. Overall, imagine war without opiates, hospitals without an opiate choice for those in severe pain, and opiates off the list for people at the end stage of their illness. Pass laws and more restrictions and those that still want it will find it. Those that legally use it and need it, will just suffer in pain with inferior medications, or end up trapped in bed and suicides will jump.
If physicians and doctor, those ones that deal with patients everyday, were included in this
“war on opiates” lawmakers and law enforcement might learn there is a lot that the medical community has already done to make opiates safer. Long term slow release is a comfort to me, knowing I can get the medication I need and have small chance of addition. While getting off these medications may be part of my future if a better treatment is found for my condition, and much surgery done to correct the damage already done, I may be off these drugs. I would like nothing more than to be able to live drug free. But that is not a reality for many of us.
The thought that politicians and not physicians, will be the ones deciding if I live a life of pain, or one of controlled comfort, is one that terrifies me.
So it would seem to most people needing a new purse is a nice thing. I do own a few purses, some nicer ones for special occasions. Also some bigger ones that are more for carrying water bottles and extra stuff, for car trips or flying.
But that day to day bag most women carry is a big problem for me.
I used to carry a regular size purse.
My mother, who is under 5 feet tall, has always carried a purse about half her size. She openly would scorn how I could carry just a normal sized purse.
My normal sized purse had besides the wallet and coin purse many other items.
Hairbrush (often small sized)
Face powder compact (I get shiny)
Flashlight (these I often buy as they are given out as gifts to children that are acting up)
simple basic first aide kit (you can get those for about $1, bandaids and antiseptic)
eye glass cleaner
sun glasses in case
Kindle or small book
Notepad with pencil or pen
Epi Pen (A MUST)
Extra medication in bottles
Keys of all sorts
folding shopping bag
small hair spray
snack (Cliff bar or granola bar)
small tooth brush and tooth paste
extra gloves (if it is winter)
extra socks (if it is winter)
small knitting project (such as hat, to kill time)
When I complained to my RA doctor about my hands and shoulder (one side was much worse) he looked at my purse and pointed at it.
THAT HAS TO GO!
So he suggested I sit down and figure out, what could perhaps just stay in my car, and what do I REALLY NEED to take in with me to a store or to the library. What was truly necessary and what would fit in the glove box.
My first sorting went poorly, but the weight of being prepared for EVERYTHING, was causing shoulder damage.
I am now down to a small crossover purse that I found on sale, from Fossil, that is perfect.
It holds JUST what is needed.
Epi Pen (never be without it)
Handicap tag (it fits in the outside pocket and I try NOT to use a space if there is only one. I then park near the cart return and use the cart as a walker. But I rarely use the last space)
medication in small container (not the entire bottle)
Sunglasses (when needed)
Sanitizing liquid (necessary for health)
I’m amazed what else I can fit in there, even the Kindle can smoosh in for a quick doctor visit. The flashlights and knitting and such can go in a small carry bag if I need them. I have TWO long doctors appointments this week. That means knitting and Kindle needed, but they aren’t needed for a trip to the grocery store.
The problem is that it appears there are two sizes of bags. HUGE and wee.
The Fossil bag I have owned is well designed. Being light weight and also engineered well, it doesn’t hurt my shoulder after being carried around. Many small bags often have so many zippers and pockets and tassels and studs or embroidery that they can weigh a lot. Every ounce counts. The cross fit is also a help. If I carry a bag by my elbow I often end up hurting that joint.
This is the bag I currently own, and the temptation to buy it in the lovely maroon is SO SO SO much. It’s a wonder of a bag in a small package. The outside pocket is perfect for the handicap tag even though it falls out sometimes.
Mind you my DREAM BAG is the tiny Haven bag….but as you can see from the price, HELLO, I get it is my companion everyday but did I mention a child in college? And we ALL HAVE DOCTORS BILLS!!!! (two doctors this week and an injection means more bills in the mail box) We can dream, but reality is I’m going to be looking at TJ Maxx clearance.
Why not get the same Fossil bag again? Because it is no longer at the sale place (TJ Maxx) and online I do put a limit on my spending. I still have a child in college. The reasons for purchasing this bag, despite the cost, is that it is so well designed and made. Only now, has it begun to show any signs of wear. The leather has held up through NH winter, and been slung in and out of more cars and shopping carts and dirty floors… and finally the lining is ripping a tad also (I am tough). Kudos to the Fossil people for making a good leather bag that is designed for USE and abuse.
The odd thing is this really isn’t a post about the need for a purse. It’s a post about how every aspect of your life revolves around your illnesses. I need a purse. I can no longer just go “I like this one”. Or “Do I pick the red or the black?” Instead it is “will this purse NOT hurt my joints and yet also carry the medication I need to save my life and the handicap tag?” It seems as if EVERYTHING has to be decided by your medical needs.
Clothing. Will this be comfortable, or will it chaff against my sensitive skin (sensitive from medication)
Shoes. Will these support my damaged joints, and if it has heels I have to WALK AWAY.
Hat. I need sun protection as my medications mean I can burn more easily. What hat will be loose enough that if I have a medication induced headache I would scream from the pressure, but also stay on and protect me. (also will this hat look stupid on me and why don’t more people wear hats so I don’t stick out?)
Car. Can I get in and out, does it have a bar on it somewhere to help me pull myself OUT.
Chair. Is that chair too straight, and how will it look with pillows all over it to support my back?
House. Yes, even the house. We moved to get a one story house because steps just aren’t going to get any easier, and while you can get a stair elevator thing, I spend so much time resting I want to be on the same floor as my family. I felt too isolated alone in bed resting a floor away from family.
Neighborhood. When we were looking at homes we were “is it flat enough for walking?”
I could go on and on, but I found that making a decision about a purse was no longer “Which one!” and is now “What will work.”
Meanwhile the old crossover bag is still going strong, and only in the early stages of needing replacing. So I have plenty of time to wait for something to come in my price range.
When I was first diagnosed with Hashimoto Tyroiditis disease I was prescribed medication to take everyday. Before that diagnosis, I only pill I took daily was a vitamin D tablet in the winter. Here in New England, almost everyone is diagnosed with low D during the winter months.
Now I look at my vast array of medications and wonder “All these can’t be good for me!” I have since had a diagnosis of two types of arthritis (one can make you blind overnight!) and Type Two Diabetes (medication induced). The amber bottles of pills keep growing.
My medications a combination of drugs to battle the chronic illnesses, and drugs to combat the drugs that combat the chronic illnesses.
Side effects need their own drugs it seems, but these drugs also have side effects.
So, if you are like me you have more than once thought “I wonder if these medications are making me feel ill? Maybe it’s not the disease, maybe it’s the medications!” Less is more is my thought, and my insides make horrible noises most of the day in rebellion against the medical onslaught. This just doesn’t seem right, or even good for me.
I decided that the one doctor I trust the most and I needed to have a little talk. So, I took a list of my medications, and asked her “Why am I taking each of these? Are there any I can cut out, or work toward cutting out?”
It was a very good conversation.
First off, I wasn’t taking many of my medications in the optimal way. My thyroid medication is a bitch, I need to take it on an empty stomach. Problem is the other medications need to be taken with food. My solution was waking at 2am and just taking them. The problem is, they work best if taken on an empty stomach with a glass of water. Not a sip of water in the middle of the night.
We talked and came up with a solution. I now take the pills first thing in the morning with a water bottle I keep by the bed. Then I wait 20 minutes and take my arthritis medications. I’ve noticed a difference in how I feel throughout the day.
My doctor also went over timing for my other medications, what I should drink and eat (I wasn’t nearly drinking enough for many of them). She reminded me, I have a more than one serious illness. Several, as most people with an immune disease, have more than one serious illness.
Some of my medications are common for people my age. The statin is needed as my family has unusually high cholesterol. We just do. Even the vegan weird hippy cousin, she’s delightful, but she’s on a statin.
Also going over my side effects with her was very important. Side effects can be very dangerous, and she suggested a new pill to help with my stomach complaint.
Did I get to drop any of my medications? No. I’m still not happy about the number of medications. But, as she reminds me over and over “You have several very serious illnesses.” People with serious illnesses take a lot of medication. Just because it’s an “invisible illness”, meaning I look fine, doesn’t mean it isn’t truly dangerous.
I have a friend that complains her husband refuses to take his blood pressure medications. She is upset, but not enough to really make sure he takes them. She jokes “If he has a heart attack it will be his fault!”
He’s proud he doesn’t “take pills”, he says he feels great. He’s thin, he rides his bike, and he “eats right”. The blood pressure cuff of course doesn’t know any of that.
It’s hard when you don’t LOOK sick, but I imagine it’s even harder when you don’t FEEL sick, to take your medications.
But, while I am still unhappy about the number of medications I take, and I want to cut down, I’m happy I did speak to my physician about each and every one.
WHY am I taking this
WHAT does it do
WHICH side effects do I have (and how can we treat them?)
WHEN can I stop taking this (maybe never?)
WHATEVER can I do to perhaps get off this medication?
HOW do I take this medication to get the most out of it
Also, if you are having a problem with one medication (and how to figure out which one can be hard), see if there is an alternative you can try. There usually is and often you are much happier with that alternative!
I have been told time and again that, right now, my job is my health. I have heard multiple people express how chronic illness is a full time job. I understand that. I really do. But I still feel driven to do SOMETHING with my days.
I’ve been a writer since I was 12 years old. I’ve spent the last 36 years intermittently writing everything from fan fiction (Poor Luke Duke fell in love with me so many times when I was 13) to unpublished fantasy novels to local newspaper articles to this blog. I love writing. I also love trying new things. I’ve tried my hand at nearly everything I’ve ever had an interest in, just to see if it fit.
Most of it didn’t, for one reason or another. As regular readers know, I found something that made my heart go pittypat in herpetology and my research into Burmese Pythons. But epilepsy has taken that away from me. You can find details in previous articles, so I won’t take up space rehashing it here.
I still feel a desire to do something with the times like these when I am not drugged out of my tree or having so many seizures that I can’t complete a full sentence without stopping. Yes, eventually we’ll probably do something more with this blog. But what else?
Right now I feel like I’m just taking up space. I feel like, aside from this blog, I’m not accomplishing anything of use. Yeah, yeah, I know I’m not useless. Yeah, I know I’m not taking up space. I just want to be productive.
So, now what?
Yes, I plan on continuing to write for BH. I know I’m doing some good here. But what else? I have other projects that I started PE (Pre-epilepsy) but are they things I want to pursue? I just don’t know. I’ve got a spiffy room to create art if I want to. I have three books that I have partial story bibles for. One of them, I’ve even written a bunch of scenes for.
Here’s the thing. It’s urban fantasy. Is anyone going to take me seriously with BH if I publish a book about faeries? Should I bother with the UF even though I love where this potential series is going? Should I just write it for me? Do I get a nom deplume for one of them? And what about the art? Do I just abandon it and chalk it up to something that didn’t fit? Am I asking too many questions for this paragraph?
So, now what?
There is so much I still want to do with my life. I can’t let an illness keep me from doing at least some of it.
David Bowie, a loss I will feel for a long time, was someone whose music and movies I grew up with. He was a person who taught me that being different is okay. Being different is good. From him I learned that we can show our difference to the world boldly and without shame.
His last gift to us, his fans, has taught me so much. The painfully raw video, “Lazarus” is a visceral reminder that, beyond the pain, beyond the frustration and anger, beyond the heartache that illness brings, we all still have one thing.
My husband is upset and worried. He knows of course that I have a 2 serious forms of arthritis. He knows I take serious medications to control not only the inflammation but the pain. He knows these medications have serious side effects, the worst being horrible intestinal pain, and that there is an ever present danger of ulcers.
He understands that I often spend part of the day or night hugging a heating pad and crying in pain. There is the acid burning and trying to sleep slightly upright to keep the acid reflux down. There are prescriptions for Prilosec, that don’t work well.
He knows all this, but I’m still here.
Then he read about the death of Glenn Frey, musician and member of the Eagles band.
He understand that these horrible immune diseases are going to kill me sooner or later. Unless I’m hit by a truck or some other disease carries me off, this is going to be on my death certificate.
The problem was his reading the details of Glenn Frey’s death. The long term hospitalization. The induced comas. The side effects killed Frey, and it wasn’t pleasant and it wasn’t quick. The number one death of RA patients is ulcers and side effects from the medication.
Frey worked out, he was a “workout warrior” to keep his RA in check as much as possible. I unfortunately do not have enough control over my disease yet to be a “workout warrior”. Gentle walks are a huge step up for me. New medications are helping a lot, but my case is far more serious than that of Frey. Working out is not an option. That was huge, because my husband believes I am “doing fine”… or as fine as it is possible with this serious illness.
Frey had his disease for 15 years. Mark sees this as perhaps only having me for only 10 year more, and possibly less. That scares him.
What scares me is the sort of drawn out death of months in the hospital. I truly dislike being in the hospital. It’s depressing, it’s boring, it’s often painful and it’s scary.
So tonight when I had a terrible attack of acid reflux and pain, he was upset. Because he sees this as a hint of how our future is going to end.
We then remind each other, that much of the time we are happy and doing well. That there are the gentle walks with our dog we enjoy so much. The movies we watch together and enjoy. The decorating of our new one level home, which we moved to knowing that one floor living was important for my safety and comfort. There are many good times yet to come. Most people don’t have a very pleasant or pain free death.
Those of us with chronic diseases understand much like Frey, our fates were sealed with our diagnosis. It’s how many years, and the quality of those years. I hope that I can keep my focus on the good times, and keep my husband’s focus on those good times also.