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?

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!

Are you being kind to yourself?

There is so much hate in this world and you will hear it said everywhere to be kind! Be kind to your elders, family, friends, strangers, just be kind to everyone! One person they always forget is you, be kind to yourself!

So, are you? Are you being kind to yourself? It’s not that hard to do, yet it so difficult at the same time! We tend to focus so much energy on everyone else,  it we can’t forget ourselves! Remember what the airline stewardess always says, “put on your air mask first, before helping others!” The same thing should be said with kindness! Be kind to yourself first and then it will just be easier and better when you give that kindness to others!

Sometimes it is hard to find ways to be kind to yourself so here are some ways you can do that!

You know the saying “we are our own worst enemy” and it’s so true, but why not try bringing out your inner advocate! You have an inner critic, why not an inner advocate?! That little critic in your head that is so eager to judge and ridicule you should really meet your inner advocate, the one who will stick up for you! The one who cheers you on and argues on your behalf!

Do you hear the way you speak to yourself? Are you your biggest fan, or your worst critic?

If you wouldn’t talk to your child (or any loved one) the way you are talking to yourself, it’s time for a change. Be your own cheering section… and if you catch yourself talking yourself down, for every negative, minimizing, or degrading thought, make it a practice to acknowledge at LEAST two strengths or amazing things about yourself!

You need to take good care of yourself to be your best self! It’s always easier said than done, but it can be done! Make sure that you get down time! You may not get 8 hours of sleep, I can’t remember the last time I actually got a good restful sleep, but at least a few hours is good too! Always have an escape to relieve stress! Oh and don’t forget to eat some yummy fruits and vegetables! Always allow yourself some “me time” and it’s not selfish to do this, it is very much needed time that everyone needs!

Tough day? Get into an argument with someone? Messed up at work? Have a day where nothing goes right? Whatever it ma be that caused you to have a harder day than normal, take time to rest & recharge!

Give yourself some recognition! New are always to quick to acknowledge other peoples achievements, but are slow to acknowledge our own! We need to start celebrating our accomplishments as well! When you do something you are proud of, stop, take a minute and say “great job”! Be as happy for yourself as you would be for others that do great things you like to celebrate!

Stop trying to be perfect! Perfection is unachievable! Instead, try to improve small areas one step at a time! You are just setting yourself up for disappointment in trying to achieve perfection! You can always improve in areas and try to be a better person!

Learn to accept yourself as you are! You are stronger and smarter than you think you are! You will fail, you will be wrong at times! You need to learn to embrace all of that and be who you truly are! Try to believe in yourself more, that is all part of being kind to yourself! Have more faith in yourself and all that you can do!

Don’t forget to remind yourself of your good qualities! You have a lot of good qualities even if you don’t recognize them all because they are different than what you perceive as good! Cut yourself some slack in your mistakes! You will make mistakes and fail at things! Try not to be too hard on yourself! Tell yourself that it’s going to be okay! Learn form this experience and make a plan on what to do so you can do better the next time!

If you have trouble being kind to yourself, I feel  best way to feel way to do it is  to imagine that someone you love is feeling hurt. What would you say to that person? How would you treat them? How would you comfort and reassure them?  Start treating yourself like that!

Remind yourself that you are enough! You will not be for everyone! Not everyone will like you! But remind yourself that it’s okay!  Remind yourself that you can and deserve to be happy! You deserve to have everything you want! You don’t anyone any explanations! You continue to work hard and enjoy your life and yourself!

In the end there is only one person In this world that you will always be around and always have a relationship with, and that is yourself! You need to start reminding yourself that you are amazing! You need to make sure you are a good companion for yourself! Be kind to yourself!

There are 6,775,235,741 or more people in the world. Why let one ruin your life? Most importantly don’t let that person be you!

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…