I just had to share this! Health Insurance is terrifying
Sincel ast summer’s failed congressional efforts to repeal many provisions of the 2010 Affordable Care Act (ACA), the hashtag #IAmAPreExistingCondition has peppered countless social media…
I just had to share this! Health Insurance is terrifying
Sincel ast summer’s failed congressional efforts to repeal many provisions of the 2010 Affordable Care Act (ACA), the hashtag #IAmAPreExistingCondition has peppered countless social media…
My father’s two sisters, my aunts, were obese; one morbidly so. The elder had diabetes early on and lost her toes. Aunt E had lost lots of weight but being a member of my father’s family did not believe in exercise, light or fresh air. She had all this loose flesh under her arms. As a child, I loved to scrunch it up and play with it. She died when I was a freshman in college. Aunt L, the younger, was morbidly obese. She was 4’9 or 4’10” and over 300 pounds. When I was little, she always told me that next year I would be able to sit in her lap. That never happened. She was straight from top to bottom. Indeed, she became larger. As I became older and she became larger, she no longer wanted to see me. I was thin and healthy until college. My parents never let me think I was as they were terrified I would take after the aunts. I kept on assuring them that I loved clothing too much for that to happen. I also liked boys and people. I had seen what it had done to the aunts. Yes, from time to time, I have used weight as a shield but only a temporary one. I like being part of the larger world too much. I worked in fashion and finance. This is not to say that overweight people do not work or succeed in these industries but I was and am consumed with my appearance. I also am my very own person and early on had determined that I was not going to live anyone else’s life but my own.
After Aunt E died, Aunt L did lose some weight. However, following the paternal family inclination, she never ever exercised. The loss coupled with her height resulted in a medically necessary operation which removed 75 pounds of excess flesh. After being smug for years that she didn’t have diabetes, it hit with a vengeance. Her eyesight went. Aunt L had lots and lots of issues. This is also around the nascence of the Internet, the change in fax machines and increasing frequency of phone orders. Aunt L found it possible to stay inside most of the time and order most of what she wanted and needed for home delivery. My mother often said that with the increasing ubiquity of the internet, Aunt L would never have had to leave the house. My mother didn’t live to see Amazon.
I was told when this journey started that diabetes was an autoimmune condition. Hmmm. I was quite determined when this journey started that I would not be confined or defined by this condition. I was adamant. Well, easier said than done. The almost 10 years since this has begun to afflict me has seen significant changes. I obtained the “spectral leg”. Initially, I only wore it to and from work. I worked in NYC and commuted through Penn, Times Square and Grand Central Stations daily. I used to wear it on the outside so it would be a visual clue to people that I might be slower or a bit stumbly. I still mourn my black leather pants – spectral didn’t work with them. I still wore heels at work, just not the 3.5 – 4 inchers that I liked. Then I started to have to wear spectral all the time. New shoes were called for. I wore “crazy” sneakers, lacy oxfords and mary janes. It was not me but afforded a modicum of style.
I started to use a cane. Again, as with the spectral leg, initially it was a visual clue. A fellow commuter used to tease me that he was waiting to see me whack someone with it. And again, per define and confine, my canes are seasonal – summer is a pink floral, fall a rich paisley, winter and evening shimmery silver grey.
I started to find it harder and harder to do things other than work. I hated the perceived pity people had for me. On the flipside, I hated, hated, hate being inspirational. I am me and this is it. I was let go from my job. The world started to become narrower as I wasn’t up and out every day. I became dependent on the cane, rejected the latest incarnation of the spectral leg currently known as Frankie for Frankenstein.
Then the walker which I haven’t decided will be known as either the gladiator or the chariot became how I need to perambulate outside. I am considering Washi tape. And the world shrinks yet again. Grocery shopping fills me with dread. The combination of a heavy cart and a poorly graded parking lot sees me relinquishing my list to my husband and sitting in the car. Recently, at BJs, the greeter has been offering me the motorized cart. I decline it as Tom and I have visions of my knocking down piles of groceries and children as I speed along ( I do like speed), forgetting or unable to brake. Lately, I am having enormous difficulty getting back into my home via its two little front steps. It involves swinging my left leg to build momentum and then using the railing to haul myself up. That’s on a good day. On a bad day, it’s Tom arranging my legs which stiffen and hauling me up. Not pretty.
One thing that I have had is the ability and knowledge to sooth myself. I read. Reading has always been my drug of choice. For several years now, I order books and Tom runs in, picks up and drops off at the library. Did you know there is a version of HIPAA for books? I had to sign a form so that he can get my books. I craft and calm down. However, I haven’t been to Michaels Crafts for months. I received an offer last week for 40% off online delivery and in-store pickup. And yes, I could designate him to pick up. He picked up at the library and then picked up at Michaels. Easy. Too easy! I flashed back to Aunt L. What happened to not confine and not define? I have goofed, big time. I don’t want to hear about you are doing the best you can or you are doing so much better than other people. Not a viable option. Yes, it limits me. It can confine me if I succumb. Other people can decide to define me but that’s on them. As I made up my mind when I was small, I need to live my own life. I have to remember this and confront and overcome.
I recently went to a new neurologist as I physically could not manage commuting in to NYC (see New Neurologist Visit). As a result, I had to have a new set of MRIs. I expected the usual “There’s been no change, blah, blah, blah.” Last year, my neurologist told me that but mentioned I had spinal arthritis, quite normal at my age. From the get go, Dr. F had said I might want to consider spinal surgery. My first thought, years ago, was pure, utter terror. I had a friend who on Thanksgiving Friday 1998, found a lump on his rib cage. He went to the ER that day and it was determined to be cancerous. Another lump was found on his spine. It was operated on. By 9 December, he was paralyzed. His funeral was Memorial Day weekend. When Dr. F broached the possibility again in 2017, she said it could possibly help but I would still have MS. My response to her was that I have been told that I am an ideal candidate for laser eye surgery. But…there’s always a but. I would still need to wear readers because of my over 40 year old eyes. What’s the point? Would my mobility change? I voted no.
Despite my expectations, the new doctor left a message that she wanted to review my test and MRIs. I had already received a call on the blood indicating that my B12 was a little high. I’ve had that before. The nurse also said my cholesterol was a bit high. This was unusual and mildly alarming. However, my husband’s was also high. Aha, we had made three batches of Pati Jinich’s homemade cookies in a week and a half. When I go off the rails, I do it definitively . The cookies are made with three and a half sticks of butter; in other words just about a pound and a tin of condensed milk. I actually thought Dr. M was calling about my urine test. I didn’t do it at the lab. The last time I did one was at my gyn NP’s as we were fairly certain I had a urinary tract infection. Hilarious is the word that comes to mind. Not to be too graphic but it was challenging to collect, not fall or spill. I also have bashful kidney or shy bladder. The lab was not happening. They gave me a specimen jar. Next, my husband would have to carry it it in. My middle initial is P usually for Perfick! But all too often Procrastinate. We finally got it together along with a little brown shopping bag for Tom to carry it in. LOL. I truly believed and feared that I had something urinary/renal going on. So, the phone call. My blood is as previously indicated. My urine is FINE! Really? Really. However, Dr. M tells me that I have spinal arthritis. Yes? But. I have badly herniated discs. There has been significant deterioration. I hear the words “spinal surgery”. I close down and tell her I have to discuss it with my husband. This is just graceful politeness. I always make up my own mind. I am known for consensus and collaboration but I always, always make up my own mind.
Technology is a wonderful thing or maybe not. Dr. M has said she will send me the report. However, there is a patient portal. I go on it and pull up the actual MRIs. They are so ugly and so not me. My philosophy has always been “I am very good at my job. I know it. I expect you to be very good at yours. You don’t know how to do mine and I don’t know how to do yours.” I used to argue with a friend of mine who wanted all the exact details. Why? Can you tell the doctor/hairdresser/dentist, “Wait, that’s not the right way!?” I do open the written report. I am good at words. I don’t like these. I pull a Scarlett O’Hara and “I’ll think about it tomorrow. Or next week.” The report actually makes a kind of sense. I have been deteriorating almost daily. No one wants to acknowledge it, including me but there it is. Spinal deterioration at least provides a rationale. This, then leads us to spinal surgery. Tom assures me that things have changed and it’s been almost 20 years since my friend had his. Laser surgery is now common. I read the report again. Basically, it says that there has been no additional demyelination; no increase in plaques. Actually, there has been no increase in plaques since this started. However, I have significant myelomalacia(new word!) and nerve impingement.
I am going to get a surgical opinion. I am terrified of it but what’s the worst outcome? I can barely walk now. My mother developed intense osteoarthritis and osteoporosis seemingly overnight. So, this diagnosis also makes sense in that light.
It’s always something. Once again, I find myself being my own care coordinator.
Has anyone else encountered spinal stenosis and had a positive surgical outcome? Or is this going to be like cataract surgery and because I’ve reached this state of deterioration, anything is an improvement?
I grew up with a mother who had a very high pain threshold. She thought childbirth pain vastly overrated. So, that informed my view of pain. In the past, I used to get laughing gas and Novocaine for cavities. Of course, my mother considered me babyish for this amongst other things.
Some years ago, I started having major issues with my teeth. In fact, I attribute dental problems for unleashing this in my system. I had Vicodin. This was before the pain I am currently in. My neurologist said it was addictive. I don’t care. I do not have an addictive personality. Despite years of denying my mother’s assessment, I confess; I am a control freak. I, especially do not like anything to be in control of me – people, jobs, drinks, drugs. I would have managed it.
I also don’t prefer using medicine. It’s another thing I grew up with. We only took aspirin with real fevers. I carry that with me to this day. When this journey started, I rejected all talk of drugs. As things progressed, I broke down. I now take Ampyra, Baclofen and Ocrevus along with high dose Biotin.
I read Megan Llewellyn’s journey with MMJ and was encouraged. People began to talk about it in a more public space. People also began to personally suggest I start smoking. I saw people online walk again.
Let’s tackle actual cigarette smoking, first. I always thought it most unattractive and senseless. When I was about 10, I told my at-the-time smoker parents that I thought it was stupid. This was in the day when there were still cigarette ads and commercials.
I became older and thought it nasty and smelly as well as ugly looking. All that being said, I found myself from my junior year university finals puffing away during that period. Only at finals. However, my senior finals were stressful. By this time, my parents had stopped smoking. The first week I was home, I found myself blowing smoke outside the bathroom window. The control freak emerged. How could I be smoking like this after only three weeks? I am my mother’s child and stopped. She decided one day to stop smoking and she did. After college, the next time I smoked was when I was losing a beloved job. I had a corner office on a high floor of the Empire State building. It was back in the days with ashtrays and windows that opened. I used to have my assistant go downstairs and buy me a pack of Eves. I remember one of the sales managers coming into my office and saying it smelt of smoke but you don’t smoke. I lost the job and stopped.
Alright, next, actual marijuana and hashish. Okay, I am a child of the 70’s. The first thing that stopped me was (see above) smoking is ugly. By the way, so is snorting cocaine. In the town and era I grew up in, alcohol was considered better than weed. Parents had no problems if you were drunk but stoned? It was around me but not for me. At college, many of the pre-meds stayed away due to med school. I had a truly horrific sophomore year which culminated in academic disaster. I returned for my junior year with enormous tension and stress. My college boyfriend prescribed pot. On one of the better days of my sophomore year, one of my roommates decided to see what pot was all about. We enlisted the help of two guys who are now nuclear physicists. She is also a prominent doctor. We smoked somehow and became really, really high though we didn’t know it. It was one of those spicy, inviting spring evenings and we gadded over to her boyfriend’s fraternity house. He has had fairly prominent political and legal roles, including judicial. See, I have always known I am the least successful member of my college class. Anyhow, the two of us stood in the street bellowing for him to comedown. Wisely, he didn’t. So, it’s the start of junior year. I still hate smoking especially in front of the opposite sex. My boyfriend (significant legal position) eventually brings a hookah. The bong did not work for me. Two – three weeks in, Miss Control Freak surfaced again and determined to need something everyday was not in her best interests. After that, only if I drank. If I drank and smoked on a Saturday, you could scrape me off the ceiling on Wednesday. My last bout for years occurred during senior week festivities when I locked myself in (name dropper) a guy who became a local broadcaster’s closet. I have successfully avoided him for years. Thereafter, once a decade ending on Good Friday, 1994.
Before I certified, someone gave me caramel gummi bears with CBD/THC. I have to channel my father who always said you never knew what you were going to get. They were uneven. They definitely relaxed and calmed me. They satisfied my sweet tooth after dinner. My muscles were looser. Sometimes, I would get higher than other times. Control!
Someone else provided me with actual weed . I coughed, my chest burned and I aced the stairstepper.
We were told about a CBD/MMJ Exposition east of us. Well, it was in an industrial area. Definitely, stoners. Not only was I the oldest, but the lamest, However, I felt like fresh meat. They didn’t want me to leave. And no, I wasn’t going to put CBD oil on my tongue for the hour drive home.
I met someone at my father-in-law’s funeral. She told me that the legal MMJ was expensive and you couldn’t get high. Uh, see above. Not my interest!
I am of Jamaican ancestry. Marijuana is herb aka ganja. It is definitely medicinal, if not religious. I like the idea of using herb instead of pharmaceuticals.
I went to my primary. He certifies you for $200 cash. Clueless, it’s just about the money. He wrote me a fairly open ended prescription – no monthly limit, no specific kind.
In New York , there is no weed, edibles or lotions. Options are: pills, vaping and sublingual oil. Guess what I chose? Well, not vaping. I chose the sublingual 50/50 CBD/THC oil to start. It’s cash only. For me, this means over $100 a month. It did numb my pain. I am mildly less tense. The first month I was taking it 3-4 times a day.
Last month, I decided to up the THC and went to 75THC/25CBD oil. This I decided to use maybe once a day. I was warned about the side effects – sleepy and munchy. NOT. I get a little thirsty. I haven’t noticed a discernable difference between the two .
My husband gives it to me from a dropper. I feel like a baby bird, opening my mouth for nourishment.
I take Baclofen and recently my dosage was increased. I started with an extra pill at night, no effect. One night I took the higher THC. I just about passed out during one of my favorite programs. My husband, “That’s it! No more THC for you!” We figured out the next day that it was the Baclofen combo.
I was gifted with the real deal. It relaxes me but I hate smoking and feeling high.
What did I expect? I wanted increased flexibility, energy and stamina. So far, it’s not working.
What has been your experience?
I was brought up with a rather healthy attitude to medical matters – fact of life, suck it up. It works for everything but blood and needles. My father didn’t understand that as he said I was a woman and bled.
Breast biopsy 2003 just before Christmas? No biggy, just the worry.
Then this started. And nobody could figure it out. So, an MRI. I went locally. I read nothing about it in advance. I knew people were scared of them. I haven’t felt claustrophobic. Again, just not allowed. I focused on this was a means to finding out what was going on. At that point in time I had been advised it could be brain tumors, cancerous or not, or maybe MS. The brain tumors weren’t a happy thought. I was given headphones playing jazz, not my favorite. I played flute in my youth so music is burned in my brain. I count beats all the time. I find it a great help with life in general. For example , I count as I swing my leg to get in the house. Since I unconsciously count, I could tell if it was an alright if I counted steps when walking in 100’s; in 10’s I knew it wasn’t a good day.
The first MRI passed uneventfully except for the jazz. And of course, the contrast dye with a needle was best ignored. It was inconclusive. Another one was ordered. This time I found I could ask for different music. I have a rock and roll heart but asked for classical. It’s calmer. This time they thought they caught the edge of a brain aneurysm. Fun. They told me to be very careful until I could come in for a different view. Very funny. During that period my postal worker asked me to give him a ride to his appointment with the postal psychiatrist. Being paranoid, he made us park around the block. Not the brightest idea for two people who had falling issues. But the definitive “this isn’t a brain aneurysm moment” occurred because the newspaper delivery man backed up at high speed on a one way street at 5:30 a.m. when I was leaving for work, turning right onto the one way street. My life flashed in front of my face but all that happened was 6000 dollars worth of damage and I cancelled the paper. Oh, and he kept on missing for quite some time. The MRIs were not definitive and I did have to go for the spinal tap – same positive, determined attitude. Same result – non-definitive.
So I ended up with a diagnosis and an admission of this is what we call it when we don’t know what it is. My first set of MRIs took me years to pay off and I was insured!
I began to be treated at an MS Institute in NYC. There I participated annually through last year in research studies. I was paid to take the MRIs. The MRIs are state of the art and I usually do at least 90 minutes. No music but earplugs and headphones. We discovered the contrast dye and I do not mix. So, here’s the thing – I fall asleep during them. I drift off. Part of it is counting the beats are like counting sheep to go to sleep. The other thing is when I was working, no one could reach me! I used to rise at 4:30 a.m. so I was perpetually exhausted? Where else could I be covered with a comfy blanket, not get calls, emails or inquiries and have a lay down in the afternoon. They were always calling in “you need to stay awake!”. Last time though I was in a deep sleep but it was fine as I did not move.
My eldest cousin does not share my view. I am told as children we were mistaken for twins. Odd, as he is almost two years older than me. I saw it better when we were teens. We both spent some of our most formative years with our indomitable grandmother. Cuz and I live in different countries but email weekly. I was surprised to find that he had an upcoming MRI and had to have some calming things. I shared some of my hints and tips with him – focus on a positive health outcome, no one can reach you workwise, close your eyes before you go into the tube, focus on that womblike, heartbeat sound, breathe and distract yourself.
Of course, on the family thing blood tells. His youngest brother and I shared a fear of blood tests. Unless accompanied, he would go in the front and out the back. Me? I live on what our grandmother called “Put Off Street”.
Cuz was very much on my mind as I had another MRI yesterday. Due to the new neurologist, I need new MRIs. She cannot view the previous ones in the research study. Yesterday, I returned to the site of the original. I know the drill. They don’t make you gown up but I had on a little cotton sundress, no metal anything. Big difference. The first time I had MRIs here I could walk. There was no spectral leg, stick or rollator. The institute is equipped to deal with me. There are orderlies and techs who can lift/drag me along. Quite hilarious as there I am in the full tog -booties, pants, gown, braless. Here, there were two tiny women and my husband wasn’t allowed in. Well, we did manage in a fashion. The blanket was not up to snuff nor my shoulders. I did get classical music which I found moderately annoying after all these years. I did not nap, quite disappointed.
And now, Cuz and I both await results. Any day that is harder than the test itself. You can’t count the beats
I adore my neurologist, truly. I have been involved with her since the beginning. She was a fellow observing my initial doctor. When she established her practice, I jumped at the chance. She explained Zumba and WII to the original doctor. I have been with her since 2008. Her philosophy meshed with mine – sometimes a fall is just a fall. I have always fallen every time I am upset since I was young. I spent most of my senior year in college on the ground. The upside is I know how to fall. I have been told, as much as something like this is possible, that I do it gracefully. She said if I wanted to wear kitten heels it was fine as long as it was safe. Personally, she didn’t understand why anyone would want to wear heels. We email each other. She practices in a multiple sclerosis institute. This has given me access to cutting edge research and care. We agree to disagree on what is inevitable. In recent years, she has been saying I need to recognize this. Inevitable is a word I disagree with. Maybe I am in denial, however, inevitable implies defeat. Defeat cannot be an option for me.
The Institute is located in NYC and I usually go by train. I have weakened so that isn’t really possible. I would have to take car service for hundreds of dollars. Well, I really haven’t worked in three years so that is an issue. I did try and get transportation through health insurance. I jumped through hoops. I have had my primary care doctor send one form three separate times. My neurologist is considered out of area. However, continuity of care is not considered a valid reason. Really?! I have a chronic illness and was being seen by a renown doctor for 10 years in an Institute dedicated to my condition. I participate in research there. This was not good enough.
I found there was an Institute, driveable from where I live. Problem – this is where I had my second opinion years ago. It was horrible. The doctor literally forgot I was there. When she saw me, she asked what I expected of her. An f*ng miracle? At the end when I asked what I could do and was told to live a good life. I voted with my feet. It would have been closer and easier. She was an alum of my uni. Even though I prayed when I was 18 to never get sick so I would never have to deal with any of them, I tend to pick alumni. She exemplified all the reasons why not.
So, I was faced with returning. When I rang, I was specific that I did not want HER! Surprised! They made it with someone else.
It started off well. I was taken more or less on time. There was even an apology for the 10 minute delay. None had been offered at the time of the hours long wait when that occurred. It went downhill from there. One of the things my husband and I have been concerned about has beenmy increasing pain. The medical herb is just numbing it. I even had to fill out a questionnaire about my levels of pain. Nothing! And we asked more than once during the course of the visit. The closest we came was a suggestion to try different combinations of the medical marijuana.
I brought all three spectral legs, including Frankie. I indicated the problems with Frankie. Again, nothing! Onto the chariot aka the rollator. I self-prescribed and bought mine on Amazon for $25. I need something different. “Your physical therapist can do that for you.” Really? And PT? She wrote me a scrip for her office, over half an hour away. Tone deaf! Diet? Exercise? No comment. Call me dissatisfied and back to the drawing board.
Oh and let us not forget the Ocrevus. I am scheduled for October 4 in NYC. Yes, I can get it with her but my husband probably can’t be with me and I’ll be in a circle with 5 other people. We want a hospital and a semi-private setting.
The only thing I did get is an increase in my Baclofen. More on that in another blog.
She didn’t even ask me for a return date. Guess the feeling was mutual.
I feel defeated as I don’t think I’ll be able to go back to my doctor. So, another stressor, how do I find the care I need?
My mother had an extremely high tolerance for pain. She used to have her teeth drilled without Novocaine. She also claimed that childbirth pain was vastly overrated. Period pain and cramps? In your mind. She worked with someone who had to take Percocet monthly and Ma just disdained that.
Me? Cavities- I used to get gas and Novocaine! Teeth cleaning – numbing agents. I was so not her. In fact, when she finally admitted to pain with osteoarthritis and osteoporosis and cried, I was terrified.
My husband also believes that pain is mostly in the mind.
In the last 6 months or so, I have been in pain but due to my upbringing, not really acknowledging it. Following my mother’s lead, I have just looked at it as part of my new reality.
I started taking medical marijuana a month ago (more in another blog). My impetus was based on hearing people report improved mobility. Yeah, I mentioned pain but just to justify the prescription. Guess what? I found that it numbed or lessened my pain. My right leg is the one most effected by this condition but my left knee feels like it is a football. Even with the MMJ, it has been a constant throbbing presence. I have been unable to concentrate. It has impacted my ability to do everyday things. Some days everything just hurts. I am my mother’s child. I soldier on.
One of the areas that has been hurting is my teeth. I have had two huge holes in my teeth. I chipped a tooth a couple of months ago and it has just rotted away.
Let’s talk about teeth and my condition. Due to losing my job (I didn’t lose it; they let me go), I found myself with a huge open hole in one of my teeth. I thought I couldn’t afford to do anything about it as I was trying to keep three households afloat on unemployment, severance and savings. I am convinced that this was the gateway in for my condition. I did have a huge infection.
I had my first cavity at 18. My great-aunt lost her first tooth at 92! As an adult, my teeth continued to deteriorate and I have had root canals, crowns, implants and extractions. With one of the first extractions, I was given Vicodin. Amazing! I was still going to Zumba and did really well. I taught a class that literally always gave me a headache with no stress. I told my neurologist. She laughed and said it was addictive. I said at my age, “Who cares?” She gave me Baclofen. It didn’t hack it.
I went to the dentist a few weeks ago. I allegedly have dental insurance through ACA. According to that dentist, most of my mouth needs extractions and root canals. Of course, insurance either denied or referred to a subpar clinic. Once I acknowledge my mouth, I take care of it. I have learned the hard way that dental is not the place to scrimp. I headed back to my favorite, expensive oral surgeon. My MMJ supply is also running out and I need to go for a refill. My thinking was that I could make it till next week because I would get Vicodin. Well, he took out three teeth last night. Two next to my upper front eyetooth. No Vicodin!! Just regular ibuprofen. This surgeon is excellent. No pain.
Of course, me being me, I went for sedation. So, last night, no pain, just blood. And in addition to the Vicodin, I have been looking forward to antibiotics. I know I have an infection running amok in my body so drugs will kill it.
The brilliant thing is this morning I woke with NO PAIN! NONE! Not my legs, not my head, not my shoulders, not my teeth. I am walking more freely. I can almost type the way I used to. I can actually concentrate! Bad news is this probably won’t last. How can I get this effect legally, cheaply and regularly?