Unfortunately, today is an especially bad pain day for me, and it has been quite difficult to write. However, I really enjoy it 😀 so I push on.
Now, I suppose I just have to get some rest and try some deep breathing exercises and use lots of ice. I dont think I can do the small chore of taking the garbage out today.
I must say however 😪 if only Dr. El-said had been able to prescribe something for pain, but unfortunately, pain medications like vicoden are so tightly controlled in Florida that even he can not prescribe them. 😪
I lived in Northern California for about 12 years. It was probably around 8 or 9 years ago ago, but I continue to marvel about how much easier it was to get pain 💊 medications when you had a real pain condition like I did back then also, It was not facial pain but a woman’s issue.
I suppose it was easier because there are a great deal of pain doctors back there. Instead of the only one here in my area.who I have already visited..
CASEY JONES OLD COUNTRY STORE AND MUSEUM IN JACKSON, TENNESSEE
Perhaps some of my readers have been prescribed B-12 shots for their vitamin deficiency’s If so, I am curious 🤔 if they helped?
On a personal note, I was prescribed a weeks worth of B-12 injections 💉 to administer here at home by my neurologist two days ago.
I was very concerned 😟 about side effects, especially ones that might affect my chronic pain 😢 but I decided to try a shot yesterday.
Luckily, the side effects weren’t too bad. I was desperate for something, anything that wouldn’t cause me to be so tired all the time. I was definitely happy when I seemed to get about a 15 – to 20-minute burst of energy that allowed me to do a few things 😌 around the house 🏠 except for most of the rest of the day I was still worn out.
I woke up this morning 🌄 horribly fatigued as I always do, and I am hoping for the same effect (a tiny bit of energy), so I gave myself another injection 💉
Unfortunately, today’s shot 😕 has had terrible effects. I feel more fatigued and in pain than I ever have. I have no energy whatsoever. I read online that the shots sometimes have a melatonin effect in which they make people horribly sleepy.
I had such high hopes for the shots! I really hoped they were going to help me with my extreme fatigue 😩
If any of my readers have ever taken B-12 supplements or injections, 🤔 how 🤔 did they make you feel?
In short, the appointment did not go well at all. Exactly what I expected to happen, unfortunately, did.
I don’t suppose it is not necessary to write a long letter about what happened 😕 at the office, because it was quite simple and something that has happened to me with every doctor I have seen for my facial pain.
Dr. El-said said that he only treated Trigimina Neueolgia, and since the medication he gave me did not work, once again I heard the dreaded words, there’s nothing more I can do, I will refer you to a headache specialist and a Tmj surgeon 😪
Quickly on a side note, I did learn from the bloodwork that I got done at Quest Labs not too long ago, indicated a vitamin B-12 deficiency, so I was prescribed some B-12 shots to give myself at home. I hope that I will be able to administer those correctly.
Unfortunately, when I was weighed, my weight was 84 pounds and not 88 (so I have lost 4 pounds within only two months) 😫 I am not dieting. I am only constantly losing, and this has me very concerned 😟 It is unfortunately an indicator of a very serious illness 🤒 for months and months I have been researching other issues that could cause this symptom, unfortunately most all of them lead to one. (But I just keep telling myself it’s because of the pain that I am barely eating because when I do, the pain is excruciating) so im not getting many calories 😪)
But that is neither here nor there. Today is my birthday 🎂 and I was hoping and praying for some good news 🙏 for at least some pain medication when it just becomes too unbearable but unfortunately, it was not to be.
I am debating whether to completely give up or not. because I am just so tired 😫 because again I have to start all over and I dont know if i really want to do that.
For three years, I have been going to doctors, having all kinds of tests, everything with no result.
I am not quite as depressed this time about this as I was with the other doctors because, like I mentioned, it was expected, but it didn’t particularly make for a very good birthday 😪
I am always afraid I will have a more painful flare-up, and I am usually right. Since Atypical Face pain is constant and never goes away. I am worried 😟 that the pain will become unbearable
Fear of pain flare-ups does make things quite difficult to accomplish. As the post above discusses, it is a very real anxiety 😬
On a personal note 📝 I suffer from this fear 😨 almost every day. In the morning 🌄 I am always concerned 😟
For example, today, I had some simple things to do. I needed to clean out Max’s cat box 📦 as well as take out the garbage 🗑 and wash some sheets and blankets. After I had done so, unfortunately 😕 I am now having some severe pain 😢 This is why I was afraid 😨 to do these things.
To be honest, things like eating have become more and more difficult 😕 I am always concerned 😟 that eating anything with cause a flare-up and I am usually correct. This is again worrisome because a lot of my energy seems to be fading.
Right ✅️ now, it is 4 pm Eastern here in Florida, and there are a couple of small things I still need to do, and yes, I am afraid 😨 I have a package 📦 which will arrive today, and I wonder just what will I feel like getting up to open the door? I also need to make some oatmeal for tonight’s possible dinner 🍽 and I worry 😟 about how just standing might make things worse. Oh, and I also need to put the clothes in the dryer. Things have definitely become harder as time has gone on, with yet still no definite diagnosis.
Symptoms can be easily triggered by very small activities. We are most always in a heightened state of fear of what we do.
Lonliness and chronic illnesses can sometimes intertwine themselves with each other.
If you have ever known someone who might be battling a chronic disease or perhaps you have had one yourself, then you will most likely be able to understand this situation.
Certainly, one of the things that leads the sufferer to a dark place is that after a period of time ⏲️ people can stop calling 📞 or even coming by for a short visit.
They may feel that after so many years they have become overwhelmed 😕 In the beginning, they were happy to offer a listening ear 👂 but as the sufferers illness showed no sign of stopping 😢 possibly it seems to them that they have given all they are capable of as far as support. In some ways, even though they love you, ❤️ they have their own lives to lead
In some cases, if the sufferer happens to be a woman 👩 it is a possibility for a husband or boyfriend to leave because they are tired of playing nursemaid. and they want to go on with their lives with someone they can actually do things with.
Perhaps the sufferers’ parents or grandparents or siblings live way out of state, and therefore, they are most likely left out of many holidays.
This can drive the sufferer into a deeper depression. Not only having the challenge of their illness to continde with everything but also having the soul crushing feeling that this abandonment is somehow their fault.
Also.feeling like there is nothing to look forward to anymore 😕
On a personal note 📝 along with the pain, I have taken strong medication for depression and anxiety for most of my life. At some point, after taking these meds for years and years, they began to stop working. Once that happens, you only take them as a necessity to prevent psychiatric drug withdrawal even though they no longer have any medical benefits.
A therapist can sometimes be a useful tool. However, in my experience, therapy tended to do more harm than good. The doctor had no empathy for what I was going through because she had never been in the same position. Another thing the sufferer can naturally do is grieve and grieve for the things and activities and lives they once had. It can be quite difficult to come to the point of acceptance 😌
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 🤒
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.
(Video should play IF doesn’t appear) (what journal entry is about. Not quite finished with entry) (SAD)
Dear Max,
All hope was lost on Wednesdays (after months of trying to get to a neurologist for these “headaches” I finally made it to one. I defiently didnt think the issue would be at all resoveled (but i prayed that the doctor could just solve the problem wnough so that I could at least drive again and run errands (so I wouldn’t still be completely and totally helpless) (and Maybe lessen the severe pain and severe pressure that I go through every day). At this point I’m actually concerned that I’ll have to go live at some nursing care facility because I don’t have any help. Used to.seem.like.a.extreme and unrealistic worry for a.47 year old with “headaches” and severe head pressure but now I don’t know) All I need is just one friend to help but since I don’t have one one friend (amazing how one tiny thing could keep you out of an extreme situation.
Since I am completely unable to drive or even able to take ubers because I feel so strange and weird and dizzy with this also. (No offense) but most uber drivers only speak Spanish around here. (So I would not even be able to ask for help in case of a n incident.
This has left me no option but to begin paying exorbitant prices for “medical transportation” I have used them two times at this point. To get to the dentist to have my tooth ripped out of my mouth (I didn’t an any way want to do so) but I kept missing endodontist appointments to save the tooth.
I payed them 115 dollars to carry me two miles to the dentist. (The guy is supposed to have some type of medical training) but im not sure that he really has) They have me by the balls and they know that) they can charge whatever they want. Now I have a hole in the third upper tooth. which in 3 to 6 months will be replaced by a dental implant. But it means basically soft foods for that length of time. I also payed them over 200 dollars to get to the neurologist which was 30 miles away. So that’s already 300 or more. I will also have to pay them again to get back to the dentist to have my stitches removed another 115 dollars. Could I end up going bankrupt?.
So another unsympathetic and uncaring doctor who was my only salvation after two sinus doctors, two trips to the emergency room and Cat scans. This doctor was my only salvation.
This is what he said,
I had written cat scan results, actually said since he saw the cat scan results were normal. He rudely suggested that I did not have a neurology issue at all. (When i had been told by two sinus scan was normal all this is not even a neurologist problem either. He says I deal with problems of the brain. With what you described your symptoms are not a brain problem. They are a facial muscle problem. Here are some muscle relaxers. Now you can leave. My suggestion get a primary care doctor and talk to your psychatist. … thats all I can do for you ms. Patterson… BYE!
So one of the last hope leaving me with no diagnosis and because of that I have clue what even other type of doctor to try.
And things are getting worse and worse. But I expected it. Because most doctors have absolutely no humanity or empathy anymore. They will not help you did into the problem further or even tell you what to try next..
LIVING WITH CHRONIC PAIN WITH ANNA AND MAX 