Well Monday I go back to work for the first time in 9 years. As we all know, living on Social Security and single, is very difficult. It is so expensive to live in New Jersey, or any where for that matter. Don't get my wrong, I'm thankful for what I do get but it's so tight. I know when I finish with orientation, two weeks 70 hrs., I'll go to part-time so I'll have down time. I've been trying to stay busy everyday to get adjusted to staying focused and that hasn't really gone as I hoped. I'm good for a few days but after that I completely shut down.
I know I sabotage myself by pushing back on things, I know I do it and still I get worried. My head, on today it has been raining, feels like you've been on a tire swing and spun super fast and now you're trying to walk. I often call it my A-HA walk. in the video he bounces back and forth on walls. I know I just have to do my best and I know once my air ducts and/or AC unit cleaned or new, I'll feel better. Breathing in mold, as I have for the past 4 years causes chronic fatigue ( on top of the fatigue I already have).. I'll put my best foot forward. 🤞🏻
So when things started to look okay, working isn’t a fact I’m looking forward for but it is a must, and I was able to get back on track, the reality of my nose finally made sense. Let me explain:
I often said I smelled ‘cigarette smoke’ every time my air conditioner turned on. I said smoke because I couldn’t make a comparison to anything else. I bought cleaning supplies to clean my air conditioner unit with my father. I had to wait until a cool day and now is the time. We opened the closet door to my air conditioner air compressor thingy, we saw a large puddle of water on the floor. My water pan, for the moisture, was always overflowing. There is a flap that is supposed to be on the unit where you insert the filters mine wasn’t there. For the past almost every years... I didn’t know so all the moisture from outside is coming directly to my unit. So the smoke smell I was always smelling is in fact MOLD. I do have two air purifies and they work nonstop. So tomorrow I have someone coming out to give me an estimate for either cleaning or replacement. UGH... When it rains it pours. Just venting... It’s all good. It is what it is. I just came back from a stroke support group luncheon with three other groups (Caregivers, TBI, stroke survivors) I feel ok and tomorrow after I meet with the repair man I have a meeting for tax freezing, for those on disability. That means you pay a set so if it goes up I pay it but I get the difference back at the end of the year then to meditation in the afternoon to end my day. Namaste
Yesterday I finally had my ablation on my heart to stop the rapid heart beat. I wasn't nervous for my cousin, who is a cardiac nurse and also had this done, walked me through everything. It didn't hit me that I remember them adding the adrenalin to make my heart race so they could find out where the 'road block' was. Basically, you have two tracks that the electrical currents in your heart go around that keep your heart function. So Imagine you have two tracks above each other but the one with that contains the faster of the current (: if you get excited or caffeine your heart beats faster and you also have a slow lane that keeps the balance- ) well one of mine didn't have a complete track because one of the tracks had extra muscle that made the faster currents speed faster in half the space.
When the current would get trapped in the smaller loo[p, my hear rate would jump to 240+ beats per min. SOOO..
When I felt them making my hear to go fast, my jaw started to hurt, I began to sweat , same as always, but when it stopped I thought they stopped the medicine for I didn't feel the usual chest pains but it just stopped beating fast. That was the time when he performed the procedure and fixed the problem.. it is amazing.
The down side is they went into both side of my groin so pain, no driving, no swimming, no lifting.. To most people that might sound like a day off but no driving to my Aunts house to swim in her pool.. But I can drink coffee.. but I'm still scared but he ( the Dr) said it was textbook so no issues. Same day.. Long day. My parents and I left my house at 4:30a for the 90 min drive.. put on to prep at 7:15a wheeled into the OR 8am finished at 12pm.. post op full bedrest until 4:00pm.. leave hospital 4:30pm (Philadelphia Rush Hour) made it home by 6:45p.. My son, 15, stayed home with the cats.. don't blame him.. I slept partially seated for my pelvic area was so sore.. Better today.. Apparently I emailed people while still drugged lol
Yesterday was both an exciting day and frightening for I submitted my first job resume in almost 10 years. My doctor hasn’t entirely allowed me to work a part-time schedule but I’m looking for just that. I see him on the 20th if this month and will talk it over with him. The reason being is, to no surprise for many survivors, I can’t play my bills.. I mean I can but it will only leave me with under $100 for the month, and that’s not including food or property taxes & car insurance. I have been talking about this a lot but I had to start paying for my Medigap insurance. What that is is Medicare only pays for 80% of a bill and sometimes less than that so the Medigap, or Blue Cross/Blue Shield of New Jersey, should cover the rest. We all know some medical bills can cost a small fortune and when you’re on a fixed income, repaying what you owe can be darn near impossible. Being under 50 and a resident of New Jersey, I am limited to just this insurance and if I don’t get that insurance, I cannot get a Medigap plan again until I’m 65 years old. Pretty crappy… yeah…
I didn’t realize it would cost me so much for my plans- Both Medicare and Medigap. Almost half of what I get a month. Thankfully I have P.A.A.D (Pharmaceutical Assistance to the Aged & Disabled) I’m not sure if it’s just in NJ but anyway that covers my medication. So I know every little thing helps but yeesh.
So back to my resume- I was a my DVR (Department of Vocational Rehabilitation) and we talked about the ARC of Cape May County (Mission Statement
The Arc of Cape May County, Inc. promotes and protects the human rights of individuals with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes. The Arc of Cape May County, Inc. is committed to enhancing the quality of life of those individuals and their families through direct services, advocacy, empowerment, education and prevention.) So as you can tell by the mission statement that is a fantastic place to work for in another life, I worked in an institution for those who were well bad off. But I digress….
Every job that isn’t basically winning the lottery sounds way beyond my abilities. I know I’m walking into the unknown and I haven’t even got the job yet but I worry that I can’t make it. I mean I get super tired after a busy day. I know I’m just putting on the brakes of what my mind is telling me because it’s a new thing. I really need to just see what happens and talking to my doctor (Neurologist) and be thankful I have a contact coming to me that will eliminate the bouncing in one eye and be grateful for those things.
Being an adult stinks sometimes. Thank you for letting me vent and I apologize if I’ve ranted a lot about this but as with everything else... It’s a first for me.
On Mondays, for the time being, I go either to my Aunts house or other members home and knit. I learned how to knit from my grandmother but learning after stroke is basically learning all over again. I enjoy it. I enjoy the company of the group. They are very understanding of my speech and having my Aunt there helps a bunch. She has been knitting for a billion years and with in 3 weeks ( she says she really didn't have time for this.. yeah right) she knit my little cousin a sweater jacket. A SWEATER JACKET.. I made a thing... it's kinda a scarf.. or a pot holder mat.. I know I'll get there....and yeah she can also knit with out looking... It's tiring.. mainly for my eyes but it will get better. I'm not sure how long I can stick the Mondays for in a few days, I'm going to Department of Vocation Rehabilitation ( DVR ) t seek a part time job. My doctors have only cleared me for a tiny bit, like 4-6 hrs a week, but I can't survive on just me. As with life, we all must persevere
So my parents invited me to see a concert of two bands that were big in their youths but I like as well. The Doobie Brothers & Steely Dan. I was worried it was going to be to over whelming. But then I remembered : 1. I was hanging with my parents ( who are very chill) 2. Most of the folks that were going to be there would be , generally, over 60. We arrived about two hours early for I had a doctors appointment before the concert so we decided to tailgate. Our tail gate entailed of hanging out with two other random parking lot folks eating hoagies ( l they ate the hoagies lunchmeat sandwiches) and drinking water. We finished off our lunches from earlier that day and sat and shared youthful stories for the random folks and my father grew up in the same neighborhood in Pennsylvania and the shared stories while my mother and I tried to stay cool for it was hot that day.
It was time to get in line to enter the venue so we grabbed our beach chairs and while we were walking to the security line, I was starting to get worries there wasn't a lot of people standing in line. I am not going to fib but I was kinda happy to not get completely overwhelmed but just to be sure I brought some ear plugs. And wow.. I forgot how much "grass" or marijuana is smoked at rock concerts. We were sitting in smoke central.. It kept me pretty chill.. my father and I were fairly big pot heads when we were younger so we kinda just flowed with it plus Steely Dan is pretty jazz-ish chill-ish rock. The people that were there and dancing were re living their childhood and it was nice to see them dance but I guess sometimes some enjoyed the herb a little to much.
It took me a few days to get to myself again. But I'm glad I got to spend the time with my parents and they asked me.. I'm going to a local one with my parents at the end of the month, this time more geared towards my mom... more bubblegum 60's.
heartI wish I could write more but my thoughts don't stay in my brain long enough lol
Well yesterday , July 2nd, I had my long awaited cardiac surgery consult. I am waiting for the office to call and schedule me for the same day surgery. They are going to do an ablation for my SVT ( fast heartbeat) :: from the start of my post, I had to leave and drop my son off at his house, stopped to see my ex father-in-law (I adore that man :) ) then to Target to get cat food::
I now have a date August 14th. Same day so only sleepy for the rest of that day. My mother or a hospital car service will pick me up for the procedure. The reason I'm having this, at an early age, is the premeditative tips I was given to help relax ( i.e. barring down like a bowl movement, putting face into ice water, laying down, a beta blocker) aren't able to slow my pulse or to end the event. I also am given intravenously medicine that normally calms the heart and if that fails, one that basically stops your heart, like a jump start, and immediately an injection of adrenaline to start it up, to no avail. The next action is to use the paddles to shock me. It happens to much to just wait.
Basically, you have a circuits in your heart. They have a route that they take to continue working, mine has a short circuit, kinda. It's common to have my issue. Most start as a flutter and maybe continue for 5-15 mins. Mine don't stop . You can't die from SVT but what they don't tell you is while my heart beats at 235-240 BMP, blood isn't being adequately sent to the rest of the body and having a stroke in my history... I want to get this treated. and bonus is.... I CAN ENJOY MY COFFEE AGAIN
So these past few weeks have been an adventure as well as Insightful. My life 24 yr. old son broke his hip. How he broke it was just a simple as the perfect fall and perfect angle but luckily due to his age, his is going to heal very well. If he was older the surgeon said he would have had to have a total hip replacement. But all that aside, this trip taught me that no matter when push comes to shove I can make it. Now, it has taken me a few days of recovering, still am, but it was heartbreaking at the same time.
I have problems with feeling a connection with people, especially my children. My son is 24 going on 16, but aren’t most kids at that age, mainly boys. Lol. I was hoping, in my mind that when I showed up, my son would have been so happy to see me. He was but understandingly he was in pain (saw in hospital) even still it was cold at best. I think the hardest thing for him and me to understand is he wasn’t there for my recovery and as with most people that don’t know the struggles we had to go through to get to the way we are now is frustrating. He was frustrated with me for I couldn’t remember little things. It was a mess all the way around. Mind you, the last time I “knew” him he was 13. I guess I wanted that boy again.
But all is good with his hip. I flew round-trip, had rental car (loved that car) had a good time. Now time to regroup
( picture of my rental car... I want this for my next car)
I would like to a share story happened to me Thursday in my group meeting.
There were only a few people there but there was one woman in particular that caught my attention. She had suffered multiple TBI’s and I can’t remember if she had an aneurysm but I know that she was very upset and in pain. Her multiple TBI’s have basically left her walking as a cripple, let me explain, who has multiple sclerosis. On top of which, she broke her right ankle a few months ago and it still has not heal correctly. She came as a guest for she lives about an hour away but I’m glad she came. She started to explain her story and also shared that she wanted to commit suicide earlier that day. I immediately focus most of my attention on her and started to ask her questions for she was complaining about her disabilities. As we got started talking, she explained that she has had a wonderful life, living in Europe dating a celebrity over there as well as getting her degree in arts. She enjoyed painting. She was a very talented painter and that allowed her to escape from any issue she may be going through. Unfortunately, her painting days are very few for she has severe tremors in her right hand, and a difficult time holding in her left hand though she joked to say her nephew said she should paint with her mouth. I personally found this idea amazing and something that she should try but it’s not up to me.
As we started talking, I noticed that she was more so lonely than she was anything else even though she had a partner who lived with her and he was more set in his ways and he was “boring”. I started talking to her about grief. How we all grief in our own way and in our own time and this may be why she is so agitated with her partner. She agrees first she’s angry she expressed her anger on more than one occasion. I explained to her I go to a meditation class once a week that’s free, only through donation, and is not too far for her to go. I invited her to come with me, not knowing if she would show up, but to my surprise that evening she did show up. She’s a very spiritual person, as I am, and I introduced her to a gentleman that I had just met they are who teaches the form of Qigong (; literally: "Life Energy Cultivation”: is a holistic system of coordinated body posture and movement, breathing, and meditation used in the belief that it promotes health, spirituality, and martial arts training. Chinese)
To my surprise, she had heard of this and she was very excited to try this practice. What was great about it is that it’s a free class where the gentleman is wanting to give back and only ask for donations towards the studio which he practiced. My new friend will be there Thursday for the two classes unfortunately I will not be there but I told her I would meet her there the following week. We exchanged phone numbers and we only share a text every day to make sure the other one is doing okay.
They say that it’s a gift to me people that you feel like you have known your entire life well my new friends is definitely one of them.
Well I finally have the Dragon software successfully added to my computer, which helps me with my posting for I have trouble getting my thoughts, no matter what size, from my brain to my fingertips .I wanted to make a blog entry for I am very excited for my mother and I are going to be traveling to North Carolina next week to make a surprise ambush on my sister for our birthday. She has two children, one of which is still in high school, who are bottomless pit. Basically meaning they eat everything and anything that’s in the house. My sister and brother-in-law have had a very difficult time since moving from New Jersey down to North Carolina for pay scale is so much different . We know that because of the cost of living in Truckinttdifferent. They’re very happy and I know that they both trying hard but at times they can have a bit of a situation with food when you have two garbage disposals living there. So after she called me very upset that all of the food that she bought was literally eaten within two days, for my nephew was home on spring break, in which he played video games and stuffed his mouth. Now this doesn’t come to any surprise for those that have teenagers or have had teenagers , I completely understand for I have one that has graciously passed it in one that is entering. I wanted to buy her a mini fridge, which I did, so she can store all of her food to ensure that she has some left at the end day. My father has purchased a lock, a key lock mind you, to ensure safety on her lunches.
My mother wanted to give her notice that we were coming down to which my father and I adamantly said no because what would an ambush be in a surprise visit you have forewarning. Now being twins, I am certain that her ‘Spidey sense’ has given her some question for I have not sent down a birthday card yet and she knows I’m always on time. I know that sometimes money can be very tight for that when it comes to family do what we need to do what we can. I plan on stocking up her freezer and mini fridge for a present. I have always shared that since my stroke, I truly never want a gift for any holiday or birthday for my gift is being here. Knowing I have my sisters back and she mine, is all the happiness I need.
It has been forever Since I blogged last.
These past couple of weeks have been of roller coaster of emotions. From losing my health insurance to ripping a brand-new contact lens, that is probably not covered through health insurance and had to be custom made for my eye, oh boy, it has just been a journey to say the least.
Now losing my health insurance isn’t what it sounds like but it is because I have been paying for my own private insurance for there was confusion with part B. (Long story for another day) but that doesn’t kick in until July of this year. So since I have part A through Medicare so technically I have insurance though part A only covers you if you are admitted into a hospital , so that really does no good for me.. I was set to get a consultation with my cardiologist for an ablation to my heart that is much needed. Only to find out that they don’t take my health insurance and I’m NOT oing to pay for it out-of-pocket so I’m waiting till July to get the console. Which is fine as long as I follow the directions however I tend to have difficulties following directions. No caffeine no chocolate no excitement, there are the three rules I have to follow and I can tell you this morning alone, I’ve broken all three of them
Now about my contact lens. This contact lens isn’t your typical prescription contact lens. This is a lens that covers my eye completely blocking my vision much like a patch does minus straps. OK…covers my eyes, that’s a fallacy. It covers the Iris and the pupil of my eye, practically matching my color but of course, I have a very challenging color spectrum in my eye that makes it more difficult. So it wasn’t exactly right but it was good enough to last me a couple days. It was very irritating. I’m not used to wearing contacts nor having anything in my eyes. Putting it in and taking out are very challenging for me but I was getting better. I was very upset. I was so mad at myself for tearing it I was afraid I was going to disappoint the doctors but then I decided to stop and take a deep breath and go you know what sh*t happens. It is no secret to this message board that I practice the philosophy of Buddhism and today I went to my temple service. (What we call it.) We have what is known as a Dharma talk which is basically someone talking about something that utilizes the thought processes and the philosophy that has been passed down for many generation within the Buddhist culture. And the talk today was about one of my heroes and recently lost Stephen Hawkings . In the talk, the discussion was about how things happen to all of us and he figured instead of worrying about stuff that was out of his control, much like h his ALS, and instead he overcame the emotion of what was happening to his body by instead choosing to devote his life and is being, as well as he knew it would be, into science. That is much like I’m choosing to look at what this past week. Focus on the good.
Now for my other emotion that I’m not used to dealing with :: I belong to a group of friends that have introduced me to the motivational speaking of this one gentleman and the minute I saw this him good grief…my heart went nuts and it was like puppy love. I don’t know if he’s married. I have not asked nor do I think anything is gonna happen from but I was just so excited that feeling still lived within the me. Now I may be overstepping, getting ahead of my skis but there is no harm in finding happiness at looking at a picture. That only goes to show you that despite what ailments that you may have an what challenges that you have to go through your heart inside is the one thing that will keep you together and focused.
So my father and I went to Philadelphia to visit my Neuro Ophthalmologist this afternoon . I always have a great time when I have my ‘Daddy/Daughter’ day trips. Most have been to doctor appointment but always a good time. So. I see a doctor who, in my opinion, is the greatest eye doctor ( But I’m Bias lol) and after going through a barrage of testing my vision we determined that NO prisim will ever correct my sight for I have Nystagmus ( eye bouncing) that basically makes seeing a single object and clear. My eyes have perfect vision on their own but using both eyes… NO DICE.. Imagine one half of your sight moves up and down all the time. And to close my right eye and only look out of my left, which had Nystagmus but not as bad as right, strains my left eye so reading is very difficult. Not ony that but comprehension is difficult but every page is a new page each time I read it.
So the doctor had three possibilities that I could do so see bette because using a patch is something I could do but I need a prescription for distance. One was using contacts that would give me the strength to see distance but on the right it would basically black out my vision by covering my iris. Contacts freak me out as it so that was a big time no go. Second was botox. Hearing what botox could do to stop my bouncing sounded so good but the down side was it freezes your eye and It may not rest straight so it would be frozen looking off to the side,with no movement, but my left eye could still move.. NO
Third was using a strong prescription strength on my right eye that basically won’t allow sight from it so I’m lookin out of my left eye only. I’ll also get a pair of reading glasses ( same lens to block sight and no prescription on my left) for I close my eye on the right to read fo that isn’t a problem. So I’m going to get that lens soon and give me time so get adjusted to them.
But the best news that just made my day: I will be starting Medicare in 2018 and was told no vision, and I was so upset for I waited so long to find the doctor of my dreams. WELL… my issue is Medical so COVERED.. I almost walked out after hearing that for I was happy. I told my father that hearing that was my Christmas gift. .
We all know a Hypochondriac, I mean many people who have had a medical emergency often are said to become obsessed with their health afterward. People often accuse me as one but I have legitimate medical evidence from testing due to symptoms that usually come from these diagnosis. Ok…Lactose intolerance, soy intolerance, gluten intolerance and diverticulitis. The latter was pointed out to me from a colonoscopy for I had no idea. My doctor informed me it usually runs in families and my father has it and I was told I had the beginning of it. As if my food bills couldn’t get any more expensive for finding foods that are lactose free, often point you in the direction of whey or soy. Well when you’re soy intolerant it becomes more difficult finding foods. So fresh vegetables and fruit… yes only now I have to start scraping out the seeds for diverticulitis and avoid high fiber foods with gluten intolerance. WOW so basically liquids, no happiness or sunshine, I’m down to water and air and grass…. Yes….maybe grass…..does that have any of these I must avoid? Geez
I know there are many people out there with far greater foods challenges out there so the walk away is that I’ll be eating well but yikes. My thinking is over the years after stroke and my stomach was stretched, there must have been plenty of room for all the allergens and with an automatic assumption that the stomach issues I had were something to do with the amount of medicine I have to take. Well since I had the Gastric Sleeve surgery in February of this year, I have noticed I'm sensitive to foods. I had the surgery to eat more. Let me explain: My brain and stomach don't communicate with one another so I will have days when I eat maybe once a day and drink as much to the other extreme of eating everything that isn't bolted down. The body holds on to the calories for it is often tricked to believe it is starving and weight gain happens. I didn’t know that for as hard as I tried to eat right, which I was told by many dieticians I was eating very healthy, the weight continued to grow. The good thing was I quickly lost the weight (60lbs so far) for I was eating more than one meal, I take the one meal and graze on and off all day. I also have drastically cut back on my sugar for I’m not tired for the weight isn’t dragging me down or overheating.
Most doctors know my stroke only as a bleed to my left hemisphere of the brain, forgetting that I has clots that traveled through my post circulatory system (brainstem, basilar artery) and I spent 6 ½ hours in surgery to manually pull out as many clots as possible by my amazingly fantastic surgical team (((shout out to Jefferson Hospital of Neuroscience in Philadelphia, Penn))) so in fact my stroke affected much more of my brain functions. That has caused me to have so many different alignments.
Basically……. I’m going to cry saying goodbye to my food favorites. ..
I know this is a topic that really causes anger amongst each other. Well here it goes…
So I’m stunned by my friends and people who preach to me about morals.
If someone throws up a claim for sexual assault... it should be taken seriously. If you look at Hollywood and women accusing men of sexual assault for years. It started with Bill Cosby and some of these women recounted situations that happened decades ago and he was immediately labeled. I believe the women who came forward finally had the strength to speak up. You look at Harvey Weinstein and the backlash he has rightfully been shown for the years and the women who owed him for boosting their careers and who felt ashamed to come forward for the fear of being black balled forever in pictures.
Then you have Roy Moore who is being accused of shameful acts with a teenager when he was in his 30’s and all you hear is “if” from most of government. IF he did it……. Why is governments slow to act? I don’t care which party you are with but we all must stand together and treat all accusers the same.
Many people, even our president ,have been accused of sexual harassment. And if you have the money, many women don't feel like they can fight back.
Clinton got impeached for saying he didn't have relations with Monica Lewinsky.. but when other people say it.. they are taken at face value.. I'm just confused.
There is a divide in our country , even more than we once had, that is causing us to not see the facts for what they are and not a polarized thing. When women have the strength to come forward, we should listen
Today is time for change and I hope it turn out alright. On an Impulse buy, I bought hair dye for my "platinum" highlights are over staying their welcome so I'm trying red..... fingers crossed
my parents are gone on holiday so I'm housing sitting so I'm full of Impulses..
Not too bad overall.
Well this past week I did what I didn’t think I could do since my stroke… I travelled alone. My travel included going on an airplane and managing my hotel stay for 7 days and all the trimmings. I knew that it would be somewhat nerve racking but what I didn’t except was how accommodating everyone was and helpful and reassured me that everything would be okay.
My trip began with my mother, who was more nervous I truly was, taking me to the airport in Philadelphia. She initially was going to drop me off but she wanted to make sure that I would have assistance getting from gate to gate. I truly don’t remember how I made it to the gate in Philadelphia but everything worked out. Oh, I forgot to tell you, I had gone to the neuro-surgeon two days before my trip and gave me a new prescription for new glasses and they were not ready by the time I left so I was struggling to see… anything. Back to the airport... I asked a fellow passenger to help me read the aisles. She was a pleasant woman and agreed to help me find my row. I made sure to always get and aisle seat so easy in, easy out. The plane was soooo small. I hadn’t flown for about fifteen years and since then I’ve had a stroke and my phobias have gotten worse and mainly because my eyesight is hindered. I made sure to pack my tablet and charged phone to keep myself busy. Thankfully on Delta we had free Wi-Fi that allowed us to watch a selection of movies. So that was great and kept my mind off of thought of being in an enclosed piece metal high in the sky. Yes… I thought of that and again mainly for I couldn’t see correctly. So, on wards to Atlanta, Georgia. That airport is HUGE. And much of this trip is a blur for …yes… my eyesight. Thankfully, I was met at the gate by someone with a wheel chair. THANKFULLY she brought me to the correct gate for it seemed we took a shuttle train and, I think for all I could see was lights and colors, restaurants and retail stores. I told the person pushing me I felt like I was in a mall and not an airport. Moreover the kind wheelchair pushers were some of the kindest folks I’ve ever met. I know some say that they are paid to be nice. Well that may be true, but you just get a vibe from someone who is genuine. I was pushed to gate and had a three hour wait so I was minding my own business when I heard a gentleman sitting next to me talk out loud and I acknowledged his comment. The next thing I knew he had moved next to me and began sharing his dilemma he was having. Had to do with racing corvettes and his new wife who wants him to ease down on the racing and travel with her. Some things that he was talking about I had some clue of but mainly I just nodded and smiled. He truly was a very nice man who lived in my state so we had common grounds to share. The next thing I knew, our layover was over and we began to board. When we life Atlanta, I forgot the flight to Daytona Beach, FL. I told my son to come and find me for it was dark and I was totally blind by then.
He found me!!
It felt good to do all of these things on my own. I had no worries checking in. Other people were upset for it was taking too long and I was in a time frame and I had no sleep the night before but there was only one girl working and she was doing her best, I knew I already reserved it so I was ok. I found that when you chillax good things happen. The issue was the hotel was closing down a floor to do a ‘face life’ for they are on the coast and its hurricane season so many hotels/motels along the coast do get damaged often. Lo and behold I was given a room that was one of the ones that were set to get fixed but she changed the floors to start but the room had its downside: many things didn’t work (refrigerator was biggie to name a few) deck door didn’t close correctly, tub had an angle to it. That being I really wanted just a bed, a pool and my son and two out of three isn’t bad. My son had to work really bizarre hours. I was happy he was working but he truly was working too much.
Because I had no car visiting people was out of the question but my son’s grandparents picked me up and brought me over to their house to visit and that’s where my son is living. They are absolutely wonderful couple. I dated their son when I was younger that produced my son. So we did some shopping at the thrift stores, some of my favorite kind if shopping. I had to keep my purchases to a minimal to fit in my suitcase.
I did get to see my son and two other friends who live close to where I was staying. We visited a Japanese Steak House and had a fantastic meal and great show from the chef.
I was so thankful that everyone I came in to contact with throughout my trip was fantastic and helpful. I met a gentleman at the Daytona Airport on my flight home who said he would walk with me and help e to the gate for he was going to Atlanta, Ga for his connection flight. I lost him on the plane for he sat behind me some and when I got off a wheelchair whisked me away through the “Mall” that is Atlanta International Airport.
What I learned is I’m able to do many things when I have assistance and it’s ok to ask for help. I really don’t like to ask and who knows what I can do when I can actually see. My glasses were finally ready two days before I was to fly home.
This weekend was my family reunion. This one was harder than ever for it was the first year without both, if not one, of my grandparents. I was looking at my grandmother’s chair and imagining her sitting in it while my grandfather was next took hers, both drinking wine and it watching golf…. With the sound off. We never understand the sound off but who were we to question.
My family could sit around a couple of picnic tables…well maybe more for more little ones running around now. The thing was, both of my grandparents were only children so no aunts or uncles for my father and his siblings. My grandparents had two boys and two girls and from them they have had a total of eight children between them and now nine. ….I think. Even though we may not see all of them as much as I’d like, once I do it’s like no time has passed and we see each other regularly. Many of my cousins once lived in Philadelphia and that was fantastic but as everyone now has their own families and jobs, it’s more spread out not. I still have family in Pa but now Virginia, North Carolina, South Carolina, Florida. That’s just on my father side. Immediate family that is. The wonderful thing is, we may be separated by distance but we are so close in love.
Today was a great day, and to be honest, I don’t really comprehend it. I went to see my doctor who did my gastric sleeve surgery. The fact he came in and was very pleased made me feel better for I cheated BIG time on vacation. The only thing good about that is I can only eat so much before I get sick feelings. My stomach really isn’t that big any more so that helps because those Cheeses were amazing... (Thanks mom.)
My parents drove my son and me to the doctors, for I still can’t drive because of my eyes, and I made sure to wear as little and light at possible. I jumped on the scale (211.8 lbs. ) wow. When I had my surgery I was (229lbs) and before the surgery I was 252 lbs. I am very happy I am losing the weight, no complaints, though the weight wasn’t my intended reason for this surgery. I’ve talked about this before that since my stroke, my brain and stomach don’t always “talk “so I would maybe eat one meal a day and hardly drink. My goal was to be “forced” to eat smaller meals. And it worked. I know eat smaller meals and have to be cognitive of what goes into my mouth. He informed me that having this surgery for that procedure usually have a success rate of 30%-60% of extra fat that is on the body. I’m already above the 30% of lose only after almost 5 months.
I do have to exercise more but until my eyes are more stable and allows me better balance I’ll stick with yoga.
I know that I have been so excited for my eye surgery and I have to be patient but I have to admit I would have never done this if I knew how terrible it was going to make me feel. i have NEVER felt as sick as I do know..EVER. I had morning sickness ( what ex husband and parents told me) and they have collectively told me I was not that bad. I'm guessing because I wasn't a "Strokie" Well every time I look,move,eat,breathe I feel like I'm going to vomit. I hate to do that but I would rather vomit than feel like I'm on the edge all the time. I have to turn the air to almost freezing for everyone else because motion sickness can make you SWEAT I mean I spend 99% of my day and night in bed because If I move I feel sick. I feel so ad because my son is with me for the first half of summer and I can't get up nor drive for I really can't see and I'd spend most of the day on the side of the road hurling. When my mother drove us to vacation ( thank goodness for that) I couldn't see anything and when I would try I would feel horrible with a migraine and sick. I chalked it up to just being right after surgery but .. then it never stopped. The doctor said it is normal to feel this way but I was never informed I's feel this way for so long. I always keep a pink bucket next to me
I had my eye surgery that I have been waiting for since my stroke. Realignment of my eyes from double vision and hopefully correcting my nystagmus or bouncing of the eyes, mainly caused by nerve damage from stroke. Eight years of wishing came down an optometrist who referred me to a neurologist at University of Pennsylvania hospital who in turn referred me to a surgeon, also at UPENN, that for the first time gave me a glimmer of hope and a surgery date. You can only imagine how excited I was and impatient for that date to arrive. I was told that the procedure was routine, which I knew, and I could tell a difference immediately after surgery so I was so ready for this.
The day finally came and I was ready. My parents and I made the 1hr 30 min drive to the hospital EARLY in the AM, so we were ALL just bowls of flowers and happiness, but with some coffee, we were on our way. I can’t tell you exactly what happened in the hours of being there for my memory causes that day to seem like it was years ago. I’m finally taken back and my parents came back before I was taken away to the operation room. The doctor came over to talk to me and I can’t lie but since he was wearing his mask and me without t glasses, I basically smiled and nodded. The surgery took roughly 2 hours (give or take). When I came out I know I had an ice pack across my eyes for my father took a picture and posted it to Facebook (I would have done the same thing). I know getting into car after I was able to go home, for this was a same day, I was wheeled out and got into my parent’s car not being able to see. I experienced something I have never had in my life: MOTION SICKNESS. I started to dry heave while my father was driving and my mother was in the back seat rubbing my back. Thank goodness they gave me a pink bin, just in case.
Once I got home and was able to take off the ice packs and get my eye drops, I finally was able to look out of my eye… only one for the right eye was swollen shut. I should have known the right side was more extensive and required more work to it. Not only did tendons and muscles have to be cut and to align but I also had terrible nystagmus that needed special attention, in both eyes but more severe in my right eye. Only seeing out of one eye was devastating for me for forgetting everything that was wrong with my eyes, did what I promised myself I wouldn’t do: build my hopes up for an instant miracle. So of course I was depressed. Once my right eye was able to open, I saw double again. Was I supposed to? I called the doctor and made a follow appointment as stated on my release papers. My father came with me, mainly for I can see well enough to drive and we after a going to the wrong buildings and many brisk walks, finally made it and the doctor was pleased. I still couldn’t understand his reactions. He asked me if I saw an improvement. I sat there and thought and said yes that my eyes weren’t bouncing as much. Still it didn’t make sense to me. I should know that recovery takes time and at that point it was only a week. I was just so built up to have instant results. He checked my eyes and I MAY still need the slightest of prisms for I still have a slight nystagmus in both eyes, but that is a nerve issue caused by my brain injury and is almost impossible to rid of but thankful to this doctor that made it less of an issue.
I just have to allow myself time to heal for the procedures he did weren’t your everyday alignment of eyes. I mean, eight years ago I was told that there was no surgery available to correct my eyesight and now look. Not perfect but every day is closer.
Well the day finally happened. My worst fear. I received a letter regarding my healthcare. I get a subsidy to help pay for my premiums to have insurance. I have to look at all my doctor’s share the same insurance, I also have to get a premium coverage that allows me to go out of state to a better hospital system that specializes in stroke. Well I have, as well as everyone who gets Social Security Disability, Medicare part A which basically covers hospital and other basic needs. I’ve never used Medicare for any coverage, for reasons I can’t get in too, legal, so this letter I have states because I have Medicare A I MUST get part B or C ( general healthcare) and will have to get D ( prescription) coverage. Ok so they say it would be less expensive to what I pay now… Which I know isn’t true, largely in part to the subsidy lowers my premium. Now that WOULD sound tempting however the coverage is spotty. The will decide if the medical need or procedure is deemed medically necessarily (per suits who sit behind a desk). I don’t know I’m very comfortable with that.
The positive is I’m locked in until September 30 of this year. I would not have a chance to have my eyes operated on for they don’t cover eye exams so I would have never been granted the office visit for I would have to pay for it out of pocket. I know I just have to sit back and be happy for what I have and the chances out there. But with the repeal of marketplace (granter of Subsidy) I will again be charged and ‘pre-existing’ conditions which brings my premiums near to Cobra costs. Sucks when you’re on a fix income.
I sound like a spoiled brat but im just wanting the best for my life.
Today I had a great session with my life coach, yes they are a real thing, and we discussed certain events in my life that caused me stress and hardship in my life. Some of these events were started back in High school, a place where kids are notoriously evil, and they stuck with me from that time forward. Silly I know, but it’s amazing when you are blindsided by kids like that.
Growing up, I lived in a small beach community with MAYBE less than 100 people who lived there year round, and most were elderly or grown-ups. From what I can remember, there were a total of 6 kids there year round. I remember, I never saw an African-American person until I was 7. Mayberry. But I loved it. It helped me have an amazingly great imagination and my sister and I played together and formed a tight bond.
In High school, it was a blend of many schools in our district into one, was my first time meeting different clichés that I was not used to. Call it Naïve or call it just being a good guy, I just assumed that everyone was nice like we were raised. I saw many types of “rich” kids that know what to say to break down a person and begin to look at their own life. It was foreign to me to think anything other than be nice and happy. Then there were the ‘smart’ kids, Well that was like a kick in the gut for me. I was smart. I am smart. I had ADD along with a learning difficulty of comprehending what I read and since learning issues as that were not talked about much, I was just labeled as ‘slow ‘ or ‘dumb’ and that can cause stress for a young mind. I know I’m not yet it wasn’t until I was older and correctly diagnosed for ADD and a learning challenge was I able to fully understand I wasn’t all of those things yet the damage was already done to my self-thinking.
People don’t fully understand that negative thinking can help pave the road to further decision making. The need of feeling acceptance, in retrospect, could have allowed me to fall into the grasp of my first ‘love’ that turned mentally and physically abusive. I did get a wonderful son out of that and for that I’m happy. I was never raised with abusive relationships or people in my life so how could I have stayed? That’s a question many people aren’t able to answer and may never and it’s that question that is so hard for me to answer; ‘Why have I stayed with those negative thoughts for so long?’
Those thoughts are just words much like reading a test or email. They are just words but it’s the inflection and context we decide to hear them in. That’s how fights get started. We ‘hear’ what we want from words. “I said I don’t like pizza” is that someone getting snarky and stressing the words I SAID or is that someone telling me what they told someone else or telling me what they may have said but I didn’t hear it? So many possibilities from one phrase. Similarity to the words someone said to young me. I had the power to decide how I interpret them. Easy right?
So as life progressed, I can only imagine how I acted and spun words in my favor. Well the ‘good’ news is, since my stroke, my thinking is more positive however, the old me is still hidden inside my head and acts as my rope holding me back sometimes. And that’s where today comes in. My life coach gave me a simple activity to do to release those negative thoughts. “They are just words”. Write them down and close my eyes and imagine someone with whom I hold in high regards, and imagine what they would tell young me and me today. When finished, tear them up or burn it and release those silly ideas. You know it helped. It’s a process so it’s not going to change overnight.
But it will change because I’m worth it!!
Some people would assume at times I share a lot of the traits as someone who is Bipolar for I tend to be riding on a roller coaster of emotions. I don’t have the extreme changes in my personality like deep lows that keep me in bed and I don’t want to assume I know those feelings but I know I’m not nor ever have been. My issues may appear like depression when in fact they are exhaustion. Mental exhaustion. On a regular-season basis I have days in which I wake up, meaning I open my eyes, around 7-9 am and I feel like I have 200lbs of weight keeping me down in bed.
I may be “awake” but my mind isn’t quite ready to conquer the day and I lay in bed watching Hulu or Netflix on my tablet. I’m not hungry or thirsty and can go until Noon or 1:00pm before I even have the energy to move. Yeah, I may get up to use the bathroom but that’s a far as I can go. I can’t even begin to tell you, how many people have accused me of having depression. “Get out of bed and just try” or “You should just go out more”. Yes I agree but I can’t even begin to explain I’m not depressed. I may be sad a times but in no way am I depressed so all the positivity needed to break that cycle won’t work on me. My brain in COMPLETELY EXHAUSTED.
I can’t imagine what someone with depression must be going through. I am not trying to equate my issues with what someone with true mental de-stress must feel all I can I talk about is my situation. Sure I was depressed or very upset in the beginning of my recovery. I always tries to see the light at the end of the tunnel. I found that easier for most of my past memories were lost so all I had to gauge my life as what it is now. SO I found myself not being able to do things so I knew I had to work hard to re gain as much as I can. Most people are burdened with the memories of their past life. I couldn’t imagine…. Really!
So please, just because I may not have the energy to get out of bed and do something doesn’t mean I don’t want be active or spend time with you. I don’t have the energy to adult.
I often relay a fantastic story I read called “The Spoon Theory”
In part it explains how things you may do every day takes someone with a brain injury (this story was about Lupus) and incredible amount of energy to just function in daily life. I have no claim to this story but it is a great explanation of our levels of life that can change daily. I could wake up in the morning and by the afternoon, I may not be able to think straight or talk clearly.
“I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.”
She wrote that explanation for everyone..
Well I have a life coach I talk with every now and then and he asked me tough questions. that make me think. Take an honest look at myself. The kicker is I spent three years in therapy to figure out why I am who I am but it was overshadowed by my stroke, then it changed to cognitive thinking to make a more positive recovery. He was asking me questions and while I was explaining my why's..you could see that I answered it happened..... A-HA. realization ... THE TRUTH became clear.We now have a better understanding of what is going on. I'm thankful however I'm in the middle of an internal battle of minds. The new me, or since the stroke, is more easy going and generally a happy positive person. However, somewhere in my brain is telling me , the old me, is holding on to certain parts of my life that causes me to struggle with confidence and other things. I just have to change my thinking and let go of the past. I've said this exact same thing before to myself and that shows you that my two brains that are arguing with each other.
They say that someone who normally is outspoken or gives the illusion of confidence and unfortunately I go back into that mindset. So next time we talk, we are going to go something called NLP ( Neuro-linguistic programming)https://en.wikipedia.org/wiki/Neuro-linguistic_programming#Main_components_and_core_concepts I'm excited to change my thinking. Once I find out more I'll share :)
Eating healthy can be challenging especially when I have multiple food allergies. Lactose, a common allergy to the enzymes often found in dairy products and Soy, which is found in EVERYTHING. So I’ve learned to make my own “Buttery Spread’ which isn’t always a butter but a combination of coconut milk and millet. I could go out to buy the butter that is Lactose and Soy free but for a little tub can cost me anywhere from $4.00 to $6.00, and being on a fixed income, is too much for my wallet.
I was told to eat protein bars... that sounds simple enough. However, everything has soy in it. The ingredients may not say SOY:
Edamame , Miso, Natto, Shoyu, Soy (soy albumin, soy cheese, soy fiber, soy flour, soy grits, soy ice cream, soy milk, soy nuts, soy sprouts, soy yogurt) , Soya, Soybean (curd, granules), Soy protein (concentrate, hydrolyzed, isolate) , Soy sauce , Tamari, Tempeh, Textured vegetable protein (TVP) , Tofu.
(Some of the foods that have these names in there I don’t eat because of sodium)
And I’ve learned to read everything. Thank goodness there are cookbooks out there that cater to my allergies. True, it’s not common, but it’s out there. So my kitchen looks like a health food market.
“Was I always this way?’
I started to show digestive problems with Lactose while I was pregnant with my youngest son. I didn’t like cheese but there are some foods with cheese I love to eat. It started with the usual stomach cramps but over time it started to go from pains to gas and diarrhea on top of my cramps. So from there I went to Soy milk. I still had the bloating, gas, cramps associated with lactose. It never crossed my mind for a while for I just thought it was still something to do with the lactose in my coffee or ice cream. The pain became too much for me to handle. I began to go online and research allergic reactions of soy. All of the things I’ve been dealing with was listed in front of me but with everything you read on line isn’t always true. So I started a self-test. I went to Starbucks coffee because they had Coconut Milk and I already checked the label to make sure there was no soy. I drank my usual coffee order but this time with coconut milk and something amazing happened…. NO STOMACH ISSUES.
From there, I looked up all the other names for soy and began to see how many food items have it in it. Again, being on a fixed income, I had to order many foods online for finding specialty foods can be hard.
Instead of always spending money all the time, I’m trying to make my own, Makes me more mindful of what goes into my mouth.
Avocados, blueberries also cause me stomach issues. Which makes sense for I’m allergic to Latex. Some of the same enzymes in avocados are found in latex. Strange but true.
So I can eat wood, stones and maybe grass hahahahaha