I stabbed myself…

I never thought that I would stab myself! I never thought even though it was so very painful to do that it would give so much needed relief!

I have had migraines since I was 15, they definitely are not any fun! I named my migraine Julie (Previous blood post) and she does not like to leave me alone! Along with the horrific pain I get extreme sound & light sensitivity and very dizzy and nauseous! I was able to somewhat control Julie but as I got older she got more aggressive!

For years I was only prescribed Imitrex, which did not help! I had like 4 different meds/OTC meds and a heated eye mask to try to help get rid of Julie as soon as possible or get some sort of relief as once she shows up she stays for at least 4 days.

January through end of March are always the worst time as Julie is there with me EVERY SINGLE DAY!! I couldn’t live like this anymore and was fed up with the treatment of the migraines I was receiving. I finally convinced my pcp to try something else and actually got a medication that somewhat knocked the pain down, not to an “I can ignore it” level but it was a little better. Unfortunately we had to try this med for a bit before we could go to the insurance company to get better meds.

I wasn’t thrilled with going back to the neurologist I had dealt with before, but then thought it would be okay as we were dealing with migraines and those are more understandable. I was prescribed Emgality and it took over 2 months to get the insurance company to approve it!

I was not expecting anything miraculous and being very very scared of needles was not thrilled with the idea of stabbing myself every month, but that is how much I am over dealing with Julie.

I finally got the injection meds in the beginning of December and holy rusted metal Batman did that freaking hurt! I almost vomited it hurt that bad to inject the meds into my leg, but I insisted that I needed to do it myself. I was amazed with the results! It kick Julie in the face,, the pain was gone and I mean GONE! Oh sure the nausea, dizziness, light & sound sensitivity ramped up, but the level 12 pain disappeared. “POOF”

I was told it could take a few weeks to kick in and work but the pain was gone with in a day. The last week of December Julie showed up with the pain again, and sadly had to wait until January 7 to do another injection as they have to be 30 days apart. I got used to the very little to no pain for the month that I hated having it back and it has been very hard to wait for relief when you know how good it was!

At my most recent check up with the neurologist, she said it will only get better the more you take the medication. I am very impressed and optimistic about this medication. I have been searching for and trying so many different ways to get relief from Julie and am beyond thrilled to finally have some! After so many many years of dealing with this horrible pain it is still surprising at how you forget how bad it was when you have a couple weeks of relief.

I highly doubt that this will ever make me like needles, but I may get used to and okay with this injection!

I almost couldn’t stab myself again on January 7, the thought of all that pain and fear of needles almost got me to not do it! I made myself do it and it didn’t hurt nearly as bad as the first time, but it still hurt a lot!  I will probably encounter that every time but it is so worth it to lessen and/or end the pain.

Julie is still hanging around right now, but she is only causing and dull ache, enough to know she is there but not enough to be a huge problem. Dizziness and lightheadedness is still ramped up and I look forward to that lessening as well.

My thoughts are so far I am very impressed with Emgality and will continue to stab myself once a month.

If you suffer with migraines (which I truly hope that you don’t) how bad are they? What helps knock the pain down?

Nobody knows…

These four walls closing more everyday and I’m dying inside and nobody knows it but me…

The pain is real even if nobody knows and I’m crying inside and nobody knows it but me…

I’m missing me and nobody knows it but me…

Nobody knows the pain that I feel!

The nights are long and the days are so sad, and nobody knows it but me…

Nobody will ever know the true feelings inside my head. They will never know the pain and torture living in my head. I wish I didn’t know about it either. Living with an invisible chronic illness doesn’t help things at all. It is a very hard life and I don’t wish it on anyone!

You try and get out of your head, but it is just so very very hard to do! Creating and craftiness helps distract me from it all. Listening to books and music is also very helpful, but at some point it all catches up with you and knocks you down.

We shouldn’t be made to feel bad about all of this. I say embrace it, let it out, scream, cry, break things if needed! Visiting these feelings and letting them out can be very good for you. It is okay to not be okay, let yourself deal with it. It is okay to visit and deal with it, just don’t unpack and live there. You need to find a way to deal with it all, find something that helps make you happy.

Never apologize for feeling hurt and sad, it is all part of being human. Never apologize for being you, for being real, it’s like apologizing for being human and that isn’t cool or necessary!

People hate for no reason and it’s becoming too easy and normal to do! I say let’s love for no reason! Less hate & more love!

You are beautiful, worth it, amazing and someone is happy just knowing that you exist! When you’re out doing life things, take the time to smile, wave or even say hi to someone, you never know it could just be the reason that they keep going in this life we live!

Nobody knows the horror that is in our heads, but maybe, just maybe it is time that people learn what is like, then possibly we could all learn to deal with it and help each other out and be a little bit happier!

Can’t be that bad…

One of my  favorite quotes from someone is always “it can’t really be that bad if you are still able to do this or that.”  I told them I didn’t know I had a choice.

Years in pain, tired and the many changes in me for no apparent reason … Hiding everything from everyone, pretending to be doing better than you are, just so I don’t have to hear them complain and put me down because of it all! You just do what you can so you don’t feel worse from the comments and suggestions from others!

Then the moment comes when they tell you what you have … You have mixed feelings: you finally know what you have, but how do you deal with it? The relief in finally having something to call these health challenges, but still not knowing how to help it. Sadly there is no real fix or cure, just goin through life trying numerous things to get a even the smallest amount of relief!

Lack of support and motivation, wanting to lie down, taking medication frequently; having a whole pharmacy on top of the nightstand.

Then, the daily responses, “Why did you get so fat?” “I have this great diet, if you just go out and exercised. If you just keep going and moving, it will be better for you! If you just have a positive mindset it will change everything and you will feel better!

This is all somewhat true in a way, as for some these things do help. Sadly for others no matter how much you try , they don’t help, and that is one the hardest parts of this all!

Silent and invisible diseases do exist …When you have an invisible disease it is difficult to argue from your perspective with ignorant people. They will never understand! Just best to save your energy for getting through the day and trying to find some relief!

Sick of always being told:

❌Did you go to the doctor?

❌ Have you tried this?

❌ Have you tried that?

❌You just need to exercise more!

❌ I don’t know what else we can do for you…

❌ I know someone who has that, and they do this, why can’t you?

Yes! I have and still do try everything !!!

Doctor’s say I just have to learn to deal with and there isn’t anything else they can do! I will never give up and I really want to make others know…

❌ A nap will not make it better! !

❌Exercise will not help me!

❌I am not lazy, this illness drains my energy and I never get good sleep!

❌I am not angry but sometimes it all gets to be too much!

❌I struggle daily with pain, mobility problems, fatigue and cognitive issues!

❌Just because I have the energy in this moment, doesn’t mean that I will always have it! It disappears instantly whenever it wants to!

Most frustratingly, people look at me and say, “It can’t be that bad; you look good “

“You must be better, because you’re smiling!”

Despite the fact that my body is experiencing excruciating pain everywhere, of course I look good, I always try to look good and it is an “invisible” disease. You can’t see it, but I for sure can feel it! You can’t fix it and you probably will never understand, but the truth is, I don’t fully understand it either!

Just have patience with me and all the others that suffer with these health challenges, we are simply doing the best that we can with everything!

Oh Julie….

Julie is mean and I really really don’t like her! She showed up in my life a long time ago and refuses to leave, I’ve never wanted someone to leave so bad! I never invite her over but she just shows up and ends up staying around for days! I try so hard to get her to leave but she just is too stubborn and won’t go easily!

She gets so bad some days that I want to cry and vomit, it’s disgusting! She just doesn’t get the fact that I don’t want her hanging around! I have meds that are supposed to help keep Julie away but sadly they haven’t been helping much! She causes so much pain, dizziness, nausea, vision issues and more! I’m so mad at her, I could spit!

I should probably tell you that Julie is a human, but an ugly migraine! Yup I named my migraines, I mean why not, they name storm & hurricanes!

They say the peppermint is great for migraines, but sadly I am allergic to peppermint and it gives me a migraine! I do know some of my migraine triggers, peppermint, eucalyptus, cinnamon, the 1st 3 months of the year! No joke on that last one, 24/7 migraine for at least 2 1/2 months (Jan-March). I finally broke down and bought some Excedrin migraine pills, they dull the pain a tiny bit sometimes, but I can’t takes this a lot as they have caffeine in them and I can’t consume caffeine anymore since my Nissan Fundoplication (they should take the “fun” part out of that word, since it’s no where near fun).

I went to see my pcp to talk about better meds. I am so tired of Julie that I asked for an injection medication and I am absolutely horrified of needles, but I am to the point of trying anything! I’ve tried CBD oil and the taste and the way it made me feel, I don’t want to take it! My pcp increased the dose of the Imitrex I was taking from 50 to 100, that didn’t help at all which I’ve been telling them for years, and it added extreme pain in my neck and shoulders for a good hour, it got so bad I was ready to go to the ER! I finally got off that one and tried another as she said insurance won’t cover the good meds until I try other meds of course! The new meds help to dull the pain a bit, but not enough! I would love to be able to go places without carrying a drug store with me because I need 3 different meds to get calm down Julie! My nausea meds help a little too as Julie makes me very nauseous!

Next step is seeing a neurologist, which isn’t fun for me as they don’t ever take me seriously! Of course this is one that I have seen before and didn’t really like, but there aren’t any others around here! I said I’d go see him as this is migraines we are dealing with and not some mystery he doesn’t want to solve! The only thing is I am afraid that he will messed around with the little shit they like to do oh so much that I have already tired and drag this out instead of saying oh let’s get rid of Julie shall we! I could be surprised and he may jump on it and tackle it good right away, but seriously I’ve seen him before so I have more doubts about that!

I may have a “small” issue getting along with some doctors as I can tell if they will be a good match for me and helpful within 15 seconds! I am very rarely wrong about that even with going in very optimistic and hopeful! I have tendency to let them spew their bullshit and then tell them what I feel and they won’t want to help me anymore! Sorry, not sorry, but I am dealing with myself & my health here and have learned to not take their meaninglessness bullshirt anymore! I have said it a million times, doctors need to go back to school and learn how to talk and listen to their patients and learn that not one thing works for every person! They could learn a ton from their nurses and aides as they are usually always amazing! Shhhhh, I could go on for days, but I’ll shoosh myself here!

Here’s hoping this doctor can help get rid of Julie, or at least make it so she can’t Vivian as often! My door mat says “GO AWAY”, not “WELCOME”!

Do you deal with migraines? Do they stick around so much that you named them? What works for you to ease the pain?

Chronic pain truths!

If we don’t say it hurts: It hurts!

If we say it does hurt: It really forking hurts!

No chronic pain doesn’t make your occasional aches and pains less valid!

But your occasional aches and pains don’t magically grant you understanding of what I feel everyday!

It’s okay to have moments when you grieve the loss of the old healthier you!

Myth: You can see when someone is in pain!


Fact: Chronic pain patients hide their pain so well that you would never know they’re really suffering!

One of the most frustrating thing about chronic pain is that you can do right and still be sick!

I am constantly torn between “I have things that need to be done and can’t let this illness run my life” and “I have to listen to my body and rest!”

I often feel a lot of pressure to show up to parties and events even when I feel absolutely terrible!

The unpredictability of being chronically ill makes staying on a schedule difficult!

Things my chronic illness sometime stops me from doing….

  1. Getting out of bed!
  2. Going out with family/friends!
  3. Having fun!
  4. Working/house work!

19 things on Fibromyalgia

  1. They don’t really understand fibromyalgia. This illness varies so much and treatment plans are different for everyone, so there’s just so much they don’t know yet!

2. You will more than likely lose friends because you can’t go to everywhere and do everything that you used to!

3. They don’t fully understand how to treat fibromyalgia, they think that what will work for one person will truly work for everyone!

4. There will be people who don’t believe you about your pain, they may think that you are making it all up, because you don’t look sick!

5. They will more than likely say your other issues are a symptom of fibromyalgia!

6. That this illness effects every part of you and your life, not just your body! It will effect you work, social, love life and your friendships!

7. They won’t tell you that the medications won’t always work! That you will more than likely gain a lot of weight because of those medications!

8. They don’t tell you about the sensory overload, the sensitivity to light, sounds, smells!

 9. It’s hard for people to understand how much energy and effort it takes to do the most simple tasks! That getting out of bed and showering and getting dressed can completely wipe you out!

10. They don’t tell you all the other connected issues like depression, anxiety, ibs and more!

11. That you will never get good quality sleep, even with the sleeping pills. Even if you stick to a sleep schedule of going to bed at the same time every night!

12. They won’t tell you that sometimes natural supplements and remedies are the better than the medications the doctor gives you! They for sure won’t cure you, but they can help relieve some of the symptoms!

13. How what you can do one day, you might not be able to do the next day!

14. They don’t realize how hard it is to have this illness and how disabling it can be, because you don’t look sick!

15. How the depression can be awful. Grieving the life you used to have, and the things you aren’t able to do anymore.

16. They don’t tell you the range of emotions you will face, the grief, the anger, the guilt of feeling like you let everyone down, and fear of not knowing what your future will be like!

17. They don’t tell you that going out and socializing will use up so much energy, even just the car ride there and back is very hard on you!

18. The you will mix up and forget words and they don’t know it because of fibromyalgia!

19. That it takes days to recover from holidays, the cooking, cleaning, socializing, ect!

Life Of Pain!

This life is a hard life! Not designed for the weak!

Did I always live a life of pain?? Oh no, I used to enjoy life without pain! I mean I still enjoy life, but it’s just a little harder to do these days!

What’s that? Oh, you want to know how it all started? Hmmm…

Oh ok! I’ll tell you! You don’t have to twist my arm! No, really don’t do it! I’ll cry!

My new alternate life started in 2011! Wow, can’t believe I’ve been like this for 6 years now!

Here we go……
One cold dark February morning, Sunny went to work. She thought it was just another day like every other day! Just going about her job, laughing and having fun! (Well as much fun that you can have at work!) Sunny didn’t really have a hard job. She made dry erase products! Who doesn’t love those? Sunny does! She put these dry erase sheets on magnet! I know, fun right? Just too give you a picture, Sunny is a tall woman! 5-11 actually. She had to lift rolls of 24inch wide rolls of 100ft magnet up to a table just above waist high! Did anyone help her? No, not that many helpful people there! Would you help her? I would if I could!

Sunny lifts and lifts these rolls to complete the order she had to do. Just working and working. BAM! OW! What was that? asked Sunny. Suddenly her back hurt! She couldn’t figure it out, she does this job all the time! For 7 years actually. Sunny relaxes and tells her friend that her back is hurting, but she will continue working. Oy, sunny thinks, this back pain is getting a little worse. Maybe I should tell my supervisor. She did, and finished the day.

Next day, Sunny manages to get to work, and tries to start her job. The pain in her back has other plans. Suddenly she can’t move. Sunny starts to panic, what is happening to me? She wonders. Immediately she goes to her supervisor, and he sends her to the doctor. Sunny’s doctor orders X-rays! Unfortunately, they don’t show anything! But the pain is awful, cries Sunny! Her doctor(Dr. Bev) believes her, but doesn’t know what happened.  Next came the MRI. Surprisingly that didn’t show anything either. Bev orders blood work, a lot of blood work. Sunny is afraid of needles.

Did you know that when Sunny was younger, it would take 3 people to hold her down to take blood, and they had trouble even with 3. Sunny was a strong little girl. She does better now, but still doesn’t like them! But blood work is so much better than IV’s! OY! Those are awful!

Hey Sunny, Focus! What? Oh, yeah, sorry, mind wondering!

Sunny’s blood work came back, not showing anything helpful. Meanwhile she is out of work! Sunny didn’t go back to work for three months. In that time, she had a lot of tests done! Seen some specialists that didn’t believe her. One said she was just crazy and depressed! Of course I’m depressed! Yelled Sunny! You try being in this much pain, with no answers!

Eventually Sunny did return to work, but only part time. The other part of the day was spent resting, or at therapy! Let me tell you, therapy is not fun! The only fun part is when I got to lay there with a tens unit (sticky pads hooked to wires and electronically message you) on and warm heating blanket! Best part! Well 7 months later, work insurance said I was done! That’s cool. But I don’t feel any better!

One day Sunny went to work and they had hired a new HR lady ! (The villain! 🤢) Villain asked Sunny into the office, and to meet her. The first words out of Villain’s mouth were “You either come back to work full time, or you’re fired!” Say what?? If Sunny was smart she would have left. See where I’m going with this? You guessed it, Sunny wasn’t smart. She stayed and suffered through a hellish eight hour work day. Day after day.

Meanwhile, Dr Bev diagnosed Sunny with Fibromyalgia and sent Her to Mary Free Bed. More therapy, job therapy, to learn how to work better, a new doctor, and therapist. Therapy was brutal. Sunny’s leg would go numb, and they made her walk fast on the treadmill anyway. So much hard work, with little strength. Sunny’s new doctor kept giving her sleeping pills. She didn’t want those, even though she needed sleep. They gave her nightmares.

Sunny’s therapist June was awesome. Sunny got to sit in a dark room and talk everything over. You see, Sunny didn’t have anyone to talk to. Her friends were abandoning her, because she couldn’t do everything for them, like they were used to. They didn’t understand what was happening to Sunny. Well, they didn’t try to understand either. June helped Sunny work through the pain. June taught Sunny how to focus on her breathing and hypnotize herself. That was the part of the visits Sunny loved the most. After a while June stated that the other doctors and nurses didn’t think She was doing her stretches. Even though Sunny was doing her stretches and everything she was told, things weren’t improving.

The only thing that did improve was Sunny’s attitude. June helped Sunny come to terms with what was going on, and learn how to deal with it better. Soon Sunny’s time at MFB ended. Still suffering everyday, Sunny soon learned what she could and couldn’t do, and how to somewhat manage her days. Sunny was able to get FMLA (which was supposed to protect her job while sick!). Work got harder and harder. Many days she had to stay home because she couldn’t move very well. Life was just too painful.

Fast forward a tad to February 2014. Sunny was going about her day working, doing the best she can. Villain came and asked to talk to her. Ok, this is a little weird, thought Sunny. BAM!! Villain fired Sunny! No reason, no nothing. Yes, I wanted to see you, because this is your last day, you’re done Sunny. Please leave. Said Villain. I’m sorry what? Asked Sunny. Why? Is this a joke? Nope, said Villain, clean out your locker and leave before I call the police! Long story short, Villain had worked there for about two years and had been trying to fire Sunny from day one. Finally she got one of the 3 owners to agree. Villain also waited until the one owner that could have stopped it, wasn’t there.

How upsetting, this situation made Sunny so upset and stressed, she spiraled into a big flare! That is full of pain and sickness! Luckily her x-bosses didn’t fight unemployment, and Sunny got a few months rest while looking for a job. She wasn’t bored at all. She loved the break from going to work in a very hateful place. She eventually got a retail job, and stayed there for a year. Sunny’s body didn’t like that job, weird hours that were all over the place, and the work was too hard.

August 2015, Sunny got a job very close to home. Which was amazing since she couldn’t see well driving in the dark. This job was so easy and had light duty work. Just the right kind of job. Sunny thought she could do that for a long time. Her illness had different plans.

Early 2016 Sunny began to get weaker and weaker! Her legs would go paralyzed. She couldn’t move them. Her pain levels shot to an eight! Ouch, that hurts! Cried Sunny. Literally cried, and cried! These episodes came and went! Bev sent sunny to a neurologist (Tay). Tay asked sunny a bunch of questions. Sunny tried to tell him everything. He wasn’t really listening. Tay told Sunny to try some sleeping pills. Wait, what!? I told you I may not be getting enough sleep, but that is not the problem. I have already tried those! Tay didn’t care, he just said try these, and I’ll see you again soon.

Sunny had to wait six months to see Dr Tay again. Mind you this is only her second visit. Tay told Sunny, “Since those didn’t work, let’s try therapy”. Oh no, demanded Sunny, I have been to therapy four different times, I have all the exercise papers, and still do them. It does not help, not wasting my time or money, please don’t make me do that! Ok, said Tay, then, well I guess I just don’t know why this is happening , call me if it gets worse. Umm, says Sunny, I wouldn’t come to you if it wasn’t bad!

Sunny was dismissed. She thought she just had to learn to live with it. She couldn’t figure out why this was happening or how to help it not happen.

August 2016 Sunny’s friend seen her post on Facebook and asked her to try an all natural product called Plexus. Skeptical Sunny tired it and was amazed! Wow, I can’t believe how much better I feel, cried Sunny. I have to continue. So Sunny jumped on the Plexus train. Her life got a little better. Her digestive issues were clearing up, her pain levels decreased. All in all everything was going well. Expect her heartburn. December 2016, Sunny had surgery to fix her hiatal hernia. Besides not being able to eat much. Sunny was feeling better! Then late January something happened! The pain in Sunny’s back kept getting worse. One day she woke up and couldn’t move her legs again.

Why does this keep happening? Cried Sunny, I was doing so good! I have not had any major problems in a while. Sunny only made it to work one day that week. When Sunny called in on Friday, she was told she had to figure something out, that she couldn’t keep calling in! Sunny cried. She thought they were understanding. Sunny did understand that they need people to show up and do the work. But they were working with her and her issues! Sunny was stressing about losing her job. Stress is not good for Sunny’s condition!

Frantically thinking of what she needs to do and setting up doctor appointments to go over options! Thinking that she may be able to go to work on Monday. Knowing that she is still in a lot of pain, and walking ok wouldn’t last long. But Sunny fears she may lose another job, due to this illness!

What will happen to Sunny?     Will she lose her job?   Will Dr. Bev figure out how to help her more?   Time will tell!

Sunny’s story isn’t done yet! Stay tuned…To be continued…