If you could host a dinner and anyone you invite was sure to come, who would you invite?
Well, let me think for a minute 🤔 I have never been to a dinner party or hosted a dinner party, so I would probably need a little help from Julia Child!
After I watched some of her shows and decided what to fix,
I would ask my parents because I have not seen them in 30 years! (since they both passed away)
Next, I would invite my friend Alex from St. Petersburg, Russia 🇷🇺 because she has been my pen pal for years, and I would love ❤️ to see her in person 😀
Next, I would invite the entire cast of M*A*S*H because it is my favorite 😍 classic TV show 😀
Finally, I would invite Jesus 😀 oh and Julia Child can come too 😀
Fortunately, as I had mentioned before, the neurologist (Dr..El Said) had ordered some blood work 🙄 to be done at quest laboratories here in Florida. so I decided to make an appointment for this morning 🌄 around 10 am. to try and go ahead and get it taken care of. 😌
My helper came and picked me up, and when I got outside the heat, the humidity really hit me.
Since I rarely leave the comfort of my air-conditioned apartment 😌 the muggy weather was actually a shock 😲
Luckily, the Labritory is not very far away, which made the trip somewhat easier.
When my helper and I walked into the office, I was quite surprised 😮 I had not been to a quest lab in a long time. The last time I had my blood drawn was back in February during my overnight stay at the hospital 🏥
There were kiosks all along the wall 🧱 where you were supposed to check in. There were no receptionists at all.
There was also a large screen, which once you checked in told you how long you would have to wait ✋️ as well as who was next in line.
No humans around at all!
I was pleasantly surprised 😮 when I only had to wait about 10 minutes until the door opened and I was called to the back for my test.
I have never been afraid of needles 🪡 especially since I have several tattoos😀
I was, however, concerned about feeling faint 😳 I asked the nurse if they had any juice, for something like, and she said no, that quest didn’t even provide juice or drinks for them!
The doctor had ordered quite a few tests, but I was rather shocked when she took 7 vials! I told her that I didn’t have any blood to spare! because one of those tests was for anemia!
Luckily, nothing bad happened except
for a huge increase in pain that I am going to have to deal with today. Unfortunately 😔 stress and anxiety 😕 always make the pain worse.
In conclusion, however, I was pleasantly surprised by the experience. It was not at all what I had expected.
I would say the entire trip didn’t take, but perhaps a little over an hour 😀
So, I am glad I decided to get it done ✔️ 😌 It is one load that is off my mind. Unless the doctor calls and tells me that he found something horrible 😬 hmm, I’m not sure a rational or irrational fear 🤔
In the last couple of months, another symptom that I used to have has come back with a vengeance. I am unable to keep my eyes shut! I try to force them to close but it causes more pain when I do. and they just pop back open again.
Unfortunately, it is quite an odd thing to try and explain to doctors
I seemed to have forgotten to try to explain it to Dr. EL-SAID (current neurologist) 🤔
However, I did attempt to explain it back in the day with Dr. Luis Hurtado. His solution was to write me a prescription for Baclofen (a muscle relaxer)
I suppose dr. Hurtado thought it was some type of muscle problem in my face causing the issue.
However, that doesn’t seem like the case 🤔
Unfortunately, as with all my other symptoms, I am at a loss! (and it certainly has been affecting my sleep)
If you could talk 👄 I would ask you what’s it’s like to be a housecat? All your medical needs are taken care of. You always have food at your disposal. You even have toys as well as warm blankets to cuddle in at night 🌙 However, most importantly,you have someone who loves you unconditionally ❤️ and would do anything for you.
Dear Cat, There’s nothing you need to concern yourself with, no pain, no frequenting doctors, no anxiety, no fear, no depression, no constant worry😬
Dear Cat, Can you tell me what it’s like to exist in a world 🌎 that’s so carefree?
In the summer of 1994, when I was seventeen, my mom and I took a road trip down to historic Covington, Georgia My mom and I were both excited 😊 and we got along well back then.
We had a wonderful time taking lots of little side trips and stopping at all the tourist attractions. There were so many new and interesting things to see.
Such as The Lost Sea 🌊 Fall Creek Falls State Park, The Chattanooga incline railway 🛤 and Ruby Falls ( a awe-inspiring underground cave)
Once we arrived, we drove around a while taking photos 📸 When we made a stop at one of Newton Counties’ several colleges, we got quite a surprise 😮
ANNA AT FALL CREEK FALLS STATE PARK ANNA WITH ALAN AUTRY WHO PLAYED LT. BUBBA SKINNER
We saw lights and trailers and cameras 📷 😀 I told my mom that I suddenly remembered that the show in the heat of the night 🌙 was filmed here. (Starring Carroll O Conner of All in the Family fame) I believe In the Heat of the Night ran from 1988- 1995.
I had always had some interest in how television shows were made 😀 So we both got out of the car and sat down to watch for a while 😀 Lucky for us we also saw three of the shows stars getting ready for a scene. 😀 including the great Carroll O Conner himself 😀 it was an incredibly exciting day 😀
Even though that summer trip was almost 30 years ago, I’ll never forget it, it is one of my very favorite memories ♥️ Definitely besides all the fun 😁 I loved being able to spend quality time with my mom 👩
Lately, my finances have become a real worry 😟 I have had to purchase some unsessary items for medical use, which I have been unable to return. For instance, just the other day, I purchased a new heating pad for my arthritis. Unfortunately, the heating pad just didn’t get hot enough, so I had to purchase another one today. 😫 I also bought a diabetes meter to test for low blood sugar in the mornings 🌄 but I was not able to figure out how to properly use it. So, it really was a waste of money.
My bill for groceries has also gone up expanintally, I have been purchasing a few new foods to find out if they would cause a flare-up, foods such as expensive cheese 🧀 and potatoes 🥔 as well as a few other items. Sadly 😥 they have all caused flares, so again 😔 I have been wasting money 💰
Another large expense that I have never had before on my credit card is paying my two helpers. These costs have gone way up lately because I have been needing them to come around more and more. 😬 (But just as a side note, I do need them desperately) (this is no insult to them) (It’s definitely not their fault)
Anyway I have needed them to go down to the apartment complex cluster of mailboxs quite frequently. For pills and other items. The mailbox is much too far for me to walk. 😬
They also pick up my prescriptions from Walgreens often, they also take Max to the vet when he has to go (which he has recently) and now since I have had more dental and other appointments they have had to drive me to these also 😬
Also, as I have discussed dental issues with this disease, I have been incurring massive dental bills as of late 😳 with no dental insurance 😳
My last credit card bill really frightened me 😬 It was a lot larger than usual. And I imagine it will be the same for a while 😬 I really hope that I can afford the constant financial requirements for this strange illness 🤒
A POPULAR SHOPPING 🛍 MALL HERE IN KISSIMMEE PALM TREES ALONG THE ROAD.
Today, I was coming back from another dental appointment, sitting in the passenger seat while my “helper” drove.
Since I rarely ever got out of the house due to the pain, I decided to open my eyes and really look around for a few minutes.🤔
Even though I had been this route many times, something seemed to dawn on me. So many people were going on with their everyday lives. Despite the fact that I wasn’t able to do the same thing.
This suddenly seemed strange to me. 😒
While I have been lying in bed for almost three years now, traffic lights have been changing, and the palm trees have been swaying
Things have been moving steadily along 😒
When my ‘helper’ turned the corner, there was the familiar yellow McDonald’s, which I never thought much about. 😲
However, today I began to picture the people ordering their lunches, some of them laughing and 😃 As well as the wonderful aroma of onions, salted fries, and sizzling hamburgers,
I wondered what the folks were happily chatting about when they sat down at their tables and began to eat.
Directly next to the McDonald’s is the 7-Eleven, the one where I used to go to fill up my tank when I had a vehicle.
Sometimes, I would go inside to pick up a snack or two.😀
I would walk up and down the aisles of goodies, trying to decide on candy or potato chips. Then, I would pull into the Publix grocery store in order to pick out some fresh fruits: strawberries,🍓 apples,🍎 blueberries,🫐 and peaches.🍑 Sometimes, once in a while, if I think about it really hard, I can still remember how sweet and delicious they tasted.
However, unfortunately, that was then, and this is now. I slowly closed my eyes again, not wanting to face my own reality. Coming back back home to bed and quickly lay down, praying that today I could possibly sleep a little and maybe find a small amount of relief from my constant pain 😢
I suppose sometimes it really hits me that I am not really a part of this thing we call life anymore, but the world keeps turning even so.
Honestly, I just can’t seem to wrap my head around this concept. 😕 it is just really strange 😕
Unfortunately 😔 severe facial pain can contribute to dental problems due to the pain caused by toothpaste. Just like the severe pain that it causes with most foods.
Over the years, I have tried many kinds of toothpastes, hoping that one of them might not be as painful 😳 There have been toothpastes without floride, as well as baking soda, I have even tried oil pulling.
Luckily, at this point, I am able to use Burts bees toothpastes. It is free of additives and dyes.
However, in the recent few months, I have needed a root canal, which, as I speak, is now infected and quite painful 😒 The crown did not fit properly on the gums, so the dentist had to sew the gum together. Now, since the crown is not permanent, I am hoping that all his work will not be lost. 😪 when I go to get the permanent crown next week.
Unfortunately, another very serious issue is that my insurance plan does not come with dental insurance 😕 I am certainly on a fixed income, and this particular infected gum around the root canal has cost me a great deal.
Although the infected root canal has been likely needed for a long time.
I will probably need another one on one of my top teeth 😬 which will be another EXTREME EXPENSE.
Unfortunately, the novacaine also cause my facial pain to rise expanintally. not only does it affect my face but also my head, I feel extreme pressure in the area.
All these dental and financial issues that come with are causing a great deal of stress and constant worry. 😪 which, of course, makes the facial pain worse every day.
It seems that I am caught in a vicious cycle. Stress always tends to equal more pain, and more pain always leads to more stress 😩
My favorite seasons are late spring and early summer.
Since Florida🌴 doesn’t have any seasons. I am taken back to when I was a little girl in Memphis during April, May, and June before it got too hot to enjoy the days and evenings.
Walking around with no shoes.Feeling the cool grass as you wiggle your toes.🌿
Butterflies were fluttering through the fresh air. 🦋The magical days and nights for a child when it began to get dark later and later, and the fireflies would start to come out, lighting up the night sky🌄
The BBQs are on the patio on the weekends.🥩
I would play on my jungle gym as dad got the meat ready to grill.🥩 The delicious smell was wafting through the air. The cicadas are buzzing in the trees.🪰
Running through the sprinklers at dusk, Mom came outside with a warm towel. Knowing that I had at least an hour left to play because there was no school, at the end of the night, watching the sun slowly dip below the trees with the soft colors of orange, yellow, and red.🌄
As well as the warm summer thunderstorms that would pop up, sometimes lulling me to sleep when I went to bed⛈️. Such wonderful memories of this magical time of year.
Today, I decided to post about something that did not involve doctors or pain.
MAX IN COLOR POP
One of my hobbies, before all these medical things began, was to take photos of all my kitties 😸 I really enjoyed editing them, and I loved the challenge of trying to make them perfect 👌 I can still take some photos once in a while. Which still brings a little pleasure to life.
These photos 📸 were taken with my phone a while back. I did not particularly feel the need to invest in an extremely expensive camera.
On May 22, I went to see my third neurologist, Dr. El-Said. Dr. El-Said prescribed some tegretal or Carbamazepine because I had mentioned to him that it was very painful to eat or to brush my teeth.
Dr. El-said then mentioned that this sounded like trigeminal neuralgia, possibly. He also said that the medication would work immediately for my pain if this was the issue.
I went home 🏡 and was quite doubtful. Unfortunately, I had reason to be. I took the medication 💊 and it did not work at all. The medication actually seemed to make the pain worse. Once again, I was so disappointed 😞 but unfortunately, this was something I was used to.
Unfortunately, once again, it seems that I am living in the movie Groundhog Day (where every treatment does not work).
Dr. El-said wants a couple more tests. Another blood test and another mri. Honestly, I do not know what doing more tests will accomplish (since I had already given him quite a great deal of test results), and unfortunately, Mris are expensive
Somedays, I even questioned myself, wondering if I am even on the right track. The only thing that I have been diagnosed with is spinal stenosis in my neck and upper shoulders by Dr. Jason Song (I have an entry further down about him) and the arthritis injections that he gave me)
Unfortunately, the spinal stenosis is also quite painful.. (perhaps I should move towards the arthritis route) It has also been told to me quite frequently that I need a headache specialist instead of a neurologist. During my own research for a “headache specialist,” I haven’t found one online at this particular time.
😪 Sadly, I feel quite tired 😫 of all these things as well as more confused as ever.
I will begin here in December 2023. I had a virtual follow-up visit with Dr. Luis Hurtado. Dr. Hurtado had ordered me to get a scan of my sinuses, so I had done that in November. Dr. Hurtado went over the scan, and unfortunately, the findings were acute sinus infection. I would find out later that this diagnosis was incorrect. I mentioned to him that the muscle relaxer called Baclofen that he had given me wasn’t working. Dr. Hurtado still viametly believed it was sinus, so he told me to go back to the sinus doctor and that there was not anything else he could do for me. I asked him if he could refer me to a pain doctor. Unfortunately, I am a bit foggy on his answer. However, I did not see a pain doctor afterward, so his answer must have been no. This was the end of Dr. Hurtado.. It was time for me to keep searching for help once again
I am going to send you more tests and possibly refer you to other doctors. Honestly, trigeminal neuralgia is usually easier to treat than atypical facial pain
Dear MAX,
Hello Max, who is currently hiding in his cat tree 🌳 because I had to give medication for his current bowel trouble.
On Tuesday morning 🌄 I saw yet another neurologist. The appointment took me quite a long time to get one of my twin helper girls who took me. They charge a fee, but that is alright. They have been lifesavers. I noticed that I had a tough time getting out of her car and also for the short walk to the office. (which is frightening)
The doctors name is Dr. Reefat El-Said. I honestly did not have much hope for relief from this doctor either, I felt like I was just going through the motions again. However, Dr. El-Said was quite thorough and asked a lot of questions 🤔 I also had a lot of information for him to go over.
I had “normal” bloodwork from the overnight stay in the hospital 🏥 I also had three MRIS (which were ordered by the “pain” arthritis doctor)
After Dr. El-Said had finished asking me questions about my condition, He questioned me about my weight, which unfortunately has been dropping. The doctor then examined me quickly and told me that I definitely still had TMJ on the left side of my jaw.
Fortunately, that’s when one of my symptoms came up, the mystery of why toothpaste, pills, or any kind of food aggravated the pain 😢
Suddenly, the three people in the room began nodding their heads 😳 They mentioned that this was a symptom of Trigimina Neueolgia. So, instead of prescribing Lyrica, he prescribed a low dose of tegretal.
Unfortunately, then came the words 😕 I dreaded. The doctor said he was going to send me for more tests and that he did not have a diagnosis for me now. When I heard those words, I felt sick to my stomach because I had heard them so many times before.
Dr. El-Said wants me to come back in six weeks, which is actually on my 49th birthday with the tests finished
The doctor ordered another Mri.this time of my lungs. As well as a specialist blood test.. If he found nothing, he was again going to refer me to someone else
I felt the same sinking feeling 😕 of defeat when we left the office. As I have so many times before. The unfortunate feeling of complete hopelessness.
How do you deal with guilt 😔? Especially when it involves your furry friend. I would advise against looking up the symptoms on google that your furry friend is exhibiting. Doing so can certainly cause more worry than necessary. Especially if you are an excessive worrier or have a lot of anxiety.
Also, when you have chronic pain, stress seems to make things a lot worse and the pain a lot stronger.
When this pain started back in March of 2023 it definitely was not as severe and as disabling as it is now.
So, when I made an appointment with my first ear, nose, and throat physician back then, the physicians name was Dr. Steelher and I were certain that this was a sinus issue. I had a lot of issues with this particular problem. I even had sinus balloon surgery with another doctor this however was a big mistake.
Unfortunately, when I saw this doctor, he figured that it was just a sinus infection, so he gave me some antibiotics and sent me on my way.
The next doctor that I saw was a neurologist by the name of Luis Hurtado. (Scroll down to August 26, 2023 to read about this) Neurologists are very difficult to get into here. This is why I waited so long. This appointment unfortunately went quite badly. Dr. Hurtado spoke to me in a derogatory way. Basically, he didn’t believe me. So, I left his office close to tears and with a bottle of muscle relaxers. He told me to go back to Dr. Steeler for a CT scan of my sinuses
When the month of November 2023 approached. I took my CT scan and made yet another appointment with Dr. Steeler. During the appointment, Dr. Steeler made some extremely incorrect observations about the scan.
I asked Dr. Steeler, what did he see. First of all, I asked if I even had a sinus infection. Unfortunately, for some reason, he would not give me a straight answer. I asked well do you see anything sinus related on the scan?” His answer was I see some inflammation in there. Dr. Steeler obviously did not know my issue either, so he decided to diagnose me with a condition I did not have. I believe the condition was chronic rhinosinusitis. He told me to go see a doctor called a rhinologist in Tampa, which is 80 miles away. I did not heed his advice because it didn’t make a lot of sense, and he sent me on my way. Once again, with no answer 😕 So it was time to do some more searching.
I call the “before time” (of course, before March 2023.(and the facial pain mystery had begun). These days are a bit difficult to think about.
I had finally left my ex-boyfriend and had moved into a new apartment for the first time. I moved in at the end of 2020. It was so exciting to have my own space.
The first 3 years were just wonderful. I could do whatever I wanted to.
I could listen to my music freely. and without judgment. I could watch anything I wanted. I could even order a pizza at midnight if I was so inclined.
I would usually wake up at 6 and put on the coffee. So I could relax and watch my favorite cable news program.
My favorite breakfast was frosted flakes with Skittles. candy.
I adored the company of Max and Maddie (maddie passed in 2022) and I loved chasing max around the apartment.
I had my car then and I.was able to drive and run errands on my own.
In the morning 🌄 I took great care to manage my unique hairstyle.
Even though I did not have facial pain then, I had not been able to work for most of my life. (due to depression and anxiety) so even though I was not going out the door for work. I treasured my new routine.
Since my days weren’t filled with doctors’ appointments or calls to the insurance company or calls to doctors’ offices, I was free to put on my shorts and tennis shoes and go out for a nice brisk walk on the track that surrounding the apartment.
Sitting on one of the benches afterward, I would relax and watch the birds at the small pond.
Sometimes, I would take the book that I was currently reading 📚 and sit in the sunlight.
When it was dinnertime, I would normally eat a delicious 😋 frozen dinner! I had never learned how to cook so I loved them!
My favorites were spaghetti 🍝 and lasagna 😋 Hopefully for dessert 🍨 there would be cookies! I certainly did love cookies. The best cookies were from Publix deli. My favorites were M and M, chocolate chip, peanut butter, and sugar!
Today, I would have to think back extremely hard in order to figure out when was the last time I was able to have such delicious food! ( And don’t forget sodas)
I believe that my last sugary birthday cake 🎂 might have been on my 46th birthday 🎂 2 years ago.
This quite simple life with its simple joys is something I certainly do miss.
I try not to think of these days too often 😕 but I am always reminded to enjoy these things and how wonderful life was when I had my health.
Dorothy goes to see a doctor about her illness, and this is what he says to her. He does not believe she is sick.
I Dont know where you doctors lose your humanity,but you lose it, you know if all of you could get very sick and very scared at the beginning of your careers, for a while, you’d probably learn more from that more than anything else. You better start listening to your patients they need to be heard. They need caring, they need compassion, they need attending to.
You know, someday, Dr Bud, your going to be on the other side of the table,and as angry as I am and as angry as I always will be. I still wish you a better doctor than you were to me.
Sadly, these are just simple tasks that most people do and rarely think about, such as standing in front of the mirror every morning and brushing your teeth, i bet folks just dont think much about that as it is a routine chore.
However, I have to (schedule) around my pain to do that simple thing… sometimes the pain is so bad that i just cant do it for that day.. I feel horribly unclean and it has been affecting my teeth.
Also, when folks do routine chores around the house.. such as taking out the trash, or straightening up, making the beds, doing the dishes… its something folks just do..
Some days im not able to get out of bed.. so these simple things dont get done.
And especially if you have a pet.. they become harder to take care of even of it was easy before. And you tend to feel so guilty about it.
Also, having meals, this is just sometjing we must do every day. Theres not much to it. However for me (sometimes) i do not grt to eat all (because most foods affect my pain level (to the point of tears)
Unfortunatly my pain level today is a day i want to cry… but im usually not able to do that either.
So, I decided that I would make another quick effort to try for some help. I just called the Orlando
and Spine Institute. Unfortunately, once again, they do not take my insurance.
Honestly, I expected to get that answer. The receptionist once again told me to call my insurance company.
Sadly, as I have searched for doctors over the years, I have gotten this response many times
Unfortunately, this is what you have to do here in this country. You must first get your insurance company’s approval before you call a doctor. If they say no, then you call another doctor, and so on an so forth.
If they say yes, then you must call your primary care physician and make an appointment with him in order to get a piece of paper called a refferal. If the doctor isn’t able to help then you repeat the process over and over again.
Everytime i get turned down by an insurance company I feel so helpless.
I believe that I need a place that deals with the spine and facial pain. I believe they are all connected
The pain doctor, I finally found a few months back was misleading. I thought he could do something for facial pain. When I had my first appointment, he did not correct me when i asked. I asked if he injected botox for pain. He answered by saying “who offered you botox” He found out i had spinal stenosis (arthritis in my neck and back).
When he gave me my first injection I still had hope for my face. However, I was highly disappointed.
I received a second steroid injection 💉 (which are painful) about a week ago.
The two injections did absolutely nothing. (They didn’t help my arthritis much either)
There is no cure for arthritis injections are sometimes used but it isn’t a guarantee they will help.
Unfortunately 😔 he was again quite misleading because I hoped so much that he could help my face. So most likely I won’t be back.
LIVING WITH CHRONIC PAIN WITH ANNA AND MAX 