Surprise, Surprise!!!

So I have yet another issue going on with my body isn’t that just absolutely wonderful?

I know that RA can effect the joints of course we all know that,  we all know RA will eventually effect our organs if we go untreated. I know all that and yet hearing the chest pain that I am experiencing is Pericarditis it scared me.  Learning my RA is doing more to my body than just screwing with my joints made me realize I desperately need treatment, it is not a cure by far but it would slow the progression of my RA and that is what I need.

My treatment was a biologic DMARD called Ilaras that was for JIA since my symptoms present like JRA and my Rheumatologist at the time believed it would help me, I am not able to take any other biologic DMARDS like Remicade, Humira, or Enbrel because they can cause Multiple Sclerosis in those who have a family history of MS, which in my case I do.  Illaras did help me, but I ended up losing my Rheumi and my pain specialist and now I am in need of another.  I no longer am taking the Ilaras, the methotrexate, Prednisone, Gabapentin, Nortryptaline or the Tramadol. Everything of mine got cut cold turkey and that was not good for me either.

I also have symptoms of Meralgia Paresthetica, which develops when my Lateral Femoral Cutaneous Nerve that runs through my pelvis and groin into my thigh muscle becomes compressed. It causes a somewhat numb feeling on the outer or lateral thigh, I say somewhat because at the same time that it is numb it feels like someone is taking a flame to your leg with a burning sensation like no other.  For me it’s constantly numb and any light touch, including a skirt or pants rubbing on it, can cause a burning and stinging. Now a deep touch doesn’t do that I can press on it and it doesnt hurt, but a light feathery touch is unbearable at times. Nights are the worst, I lay on back and within 30 seconds there is shooting burning pain going up and down the outside of my thigh, I force myself to turn over and it lessons but it is still there.  So what is the treatment for all this? Gabapentin! My abrupt stop of my Gabapentin feels like it increased the amount of pain I feel from this nerve compression.

Now I have to start over visit my Primary who refers me to a Rheumi and Pain Management/Neurologist and now also to a Cardiologist to take a look at my heart.  Waiting lists are a year-long, and then I have to redo all the tests to prove I have all the diseases I was already diagnosed with for the past 12 years. Oh the wonderful world of doctors who order more tests than necessary. I used to love doctors, hell I wanted to be one and I still do, but being on this side of the needle is very different.

The new year is coming up and its time to fix all this, if not for me for my family.  I hate feeling less than and this whole year was a year of me being unable or less than to everyone and everything. I am done with that.  Remember warriors to set realistic goals this season, know your limits and be careful, setting your expectations so high sometimes only results in disappointment which feeds that lovely, here forever house guest depression. Realistic goals, not extreme goals, you will get there one step at a time. Until next time, warriors …

“The pain you feel today, is the strength you have tomorrow.”

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Too long…

It’s been too long since I was able to write. Writing is my way of expression, helps me to understand what I’m feeling and why, I have not had the chance to just write and I miss it. 

I was at home today, in pain as usual, I was dealing with it and out of no where my heart feels like it’s skipping a beat. I am having PVCs and there was nothing to bring it on, I hadn’t even had caffeine. My first thought was that it was something simple like over exertion and I should probably sit down. As time passed I started to wonder…

Are PVCs a symptom of a heart attack? Can the inflammation squeezing my heart cause PVCs? Am I going to have to go to the hospital? 

Naturally this brought on lovely anxiety with crushing chest pain to say “Hey I am here too go ahead and think this is a heart attack too!” I sat down and put something on TV that could hopefully get my mind on other things. I closed my eyes and asked myself out loud. “What do you hear?” Slowly with each struggling breath I called out, again outloud, everything I could hear…

  1. My kids laughing…
  2. The people on TV…
  3. The AC…
  4. My phone vibrating…
  5. The washing machine…
  6. Water running…
  7. My house creaking …
  8. A door closing…
  9. My breathing…
  10. My heartbeat…

By the 10th thing I listed I had calmed myself down and succeeded in not having a panic attack or at least not one as bad as it could have been. Now my adrenaline is coming down and my headache is beginning, I lie back onto my bed and take note of what just happened. I was enjoying time with my children when I had to stop because of my heart, my illness. I then instead of just relaxing and letting it pass, like any person not burdened by constant trips to the ER or irrational fears about everything would do, I let my mind scare me. 

This illness, disease, ailment whatever you want to call it, this is running my life still without me even realizing it. Sure I fight the pain and run after my kids, I get up and walk even if I do it with a limp, but I let it control my emotions. Anyone who has suffered emotional abuse knows it’s horrible to have someone or something able to stand over you and control your emotions, to strike fear in you at any given moment. If this disease wasn’t bad enough once it caused my depression, now it makes me fear small palpitations in my heart, so insignificant most would have thought their heart was simply racing. 

I must not let it control me or my emotions, I have overcome so much in my life I will not let this disease take over. I CAN’T! We fear a lot more than just the pain we know is coming, we fear the moment this disease will take over and say “you put up a good fight, but your fight is over now.” And sure it won’t happen like say a gunshot wound or like cancer, it will cause your organs to give you a heart attack or liver disease so it will never show COD: RA on the paperwork, but no matter its disguise it’s still the reason. I will not let myself fear that day even if it’s tomorrow! I will continue to fight the pain both inside and out! 

Good luck on your fight today and everyday my fellow warriors, wish I could lend you all a spoon! 

“The pain you feel today is the strength you have tomorrow!”

Getting sick with RA

Sunday was my 7th wedding anniversary, it should have been a wonderful day with a lovely dinner and a movie date that we get once maybe twice a year. Instead I was woken up with a massive swollen and sore throat, very odd for me because ever since I was 11 when my tonsils were removed I do not get sore throats. My ears hurt, I couldn’t talk or swallow without pain. My husband woke me up to get ready to drop off the kids at his parents so we could enjoy our day, I sat up and with every ounce of my being and holding my throat I said “can we not take them please!!” With the biggest pout I could manage. That apparently was not an option. Lol he got them dressed all by himself and woke me up 45 minutes later to tell me again to get up to drop off the kids. Nope wasn’t going to happen, I had absolutely no strength to even open my eyes let alone make it to the car. So for the first time in 7 years I stayed home while he dropped off my babies at his parents, while I was vomiting with no relief all the bile in my stomach.  He returned an hour later soup in hand and laid with me all day and night until we picked up the babies, great husband not a complaint just a smile and sleep!

Along with the horrible symptoms, of whatever I ended up catching, times 10 I also had more fatigue than usual and a massive fibro and RA Flare up. My jaw doesn’t open and is inflamed and locked up, my hips will not let me sleep on either side, and anytime someone touches  me I feel like my body is being burned alive. My back feels like my bones are breaking when I sit or walk. So all this on one day, having RA means a cold feels like the full blown flu and liquids and bedrest is what I have to endure for at least a week. It’s early Wednesday and my kids can’t sleep, my husband needs breakfast and has to get out of the house on time, once everyone is in bed and resting I can finally lay down. Of course with 3 ADHD littles that is short lived and I get about 2 hours before they are jumping up and down and ready for lessons and play time.

So I am on day 4 of my horrible cold and on the 4th lethal weapon with my hubby and having chili tonight for dinner. I have wonderful lessons to teach today about subtraction of triple digits, fractions, and reading Shakespeare with my littles, so today in the end of this post I am willing myself to be better with the help of tramadol, gabapentin, and redbull! Lots and lots of redbull!! Caffeine is not a trigger for me like it is for others. Sugar might be, but it’s even harder ok avoid sugar as its in everything even fruit. So like I said I WILL FEEL BETTER!!! I WILL NOT HURT TODAY!!!! I WILL HAVE AN UNLIMITED AMOUNT OF SPOONS!

So if that works I’ll let you know! I can recommend Arthritis Hot for a fibro flare that causes sore muscles (anything like burning or stabbing caused by fibro this will not work for them at least not for me). The Arthritis Hot relaxes my muscles enough to at least let me sleep a couple hours. I can also recommend lots of water and Gatorade and DO NOT miss your pain medication! Homemade chicken soup with bone broth and cilantro for vomiting(if it’s extreme I grew up with grandma making a tea from cilantro and that helps to stop the vomiting.) For my sore throat lemons with Chinese candy is my go to.  As for cold symptoms like coughing and sneezing I have no recommendations because I do not take anything. I drink lots of boiled honey water with lemon while I’m sick and very rarely pick up Theraflu. When I’m sick I try to rest as much as possible and drink lots of Gatorade, water, and herbal teas my favorite being mint. I hope some of this can help anyone reading that suffers with a minor cold that feels like the flu. Good luck you guys and I am hoping my will power is stronger than my cold! Until next time…

“The pain you feel today, is the strength you have tomorrow!”

 

Disclaimer: I am not a medical professional and do not claim to be, please do not take any advice given as medical advice and always check with your doctor before changing medications or trying something new including herbal remedies.

This blog post is in no wat sponsored and I was not given anything free or to review. The items listed above are items from my personal medicine cabinet which I purchase with my own money and are my personal opinions about the product.

Outside

For the past few months I have dealt with flare ups in every joint imaginable from injuries to said joints or just from the weather alone. I hyper-extended my knee, I woke up to my shoulder and elbow 2 times their normal size and on fire,  neither one of my hips wants to give in and let me rest or walk properly, and even my jaw has joined in on the party and locked to the point of enabling me to eat or drink without a straw. Through out all that though, my worst issues come from within.

My physical pain seems to make my emotional and mental pain 10 times worse. There are times I feel great and can’t wait to get dressed, put my makeup on, and enjoy my family and my day, but there are more times when waking up is an impossible feat, where buttoning and zipping my jeans just won’t happen and I need to change or need someone to do it for me. Those days I seem to wake up and have absolutely no spoons left to even start my day let alone make it through its entirety. Those are the days I lean on my rock, my husband.

His diagnosis’ are pouring in and he is on just as many medications as I am now. His back is so stiff he can’t properly turn to one side and his neurologist says “it’s just chronic pain and depression” that doesn’t make him have better days.  His depression is at an all time high and he is left with a lot of sadness, anger, and excessive amounts of self loathing. My rock can’t be my rock if he is crumbling in front of me.

I never knew what it felt like to be on the outside, to be the one watching your loved on writhe in pain, limp to the restroom, take half an hour to shower because they must stop and sit to rest their back, or to be so sad or angry that getting out of bed is not happening that day. I now know what he feels like when it is me that’s in pain. I am in more pain in my heart, watching my husband unable to help with even a morsel of his pain, than I am in any part of my body.  My husband is my everything and I would depend on him with everything, I used to cry on his shoulder when my pain was unbarable or when my mother hurt me for the millionth time, but now I cry alone in the shower. Now when I cry it isn’t for me, but for him. I will hide my feelings and my pain, I will hold his hand when he needs it, I will be his rock until we can be each other’s.

Dealing with chronic pain, depression, or a chronic disease like RA isn’t just physically and mentally painful or draining for the one dealing, but for all the ones who truly love them as well. I would have never realized that they feel as much heart wrenching sadness watching their loved ones go through their pain as their loved ones feel going through it.  I realize now that I can’t take away his pain from watching me in pain, but I can lesson it by not involving him in it. I am looking for a therapist someone I can talk to that isn’t my husband. The only thing he needs on his mind at this time is healing to better himself for his own sake, but also for his loved ones as well. I am not sure if he is aware that it effects all the ones who care about him, I know he knows what it felt like to be on the outside, but from experience of being on the inside, I wasn’t aware mainly because of the fact that I was in too much pain to care how others felt. I know that seems selfish and it is, when you are dealing with such immense pain you don’t think of others around you. At this point it’s my job to make sure his loved ones such as his sisters, parents, and children don’t need to worry about him until they make themselves sick. I will take care of myself and him for everyone’s sake, but mainly for his.

For everyone out there reading this or dealing with similar issues, take the time today to thank your loved ones and reassure them that you are doing just fine. They may not believe you, but it might ease their mind just a little and they will be grateful to know, you care and that you know they are around for you. It just takes two little words to show them your appreciation for all they do for you: Thank You! Use them today, and thank you to all of you reading.

To my husband, since I know you will see this, thank you for all you have done and continue to do for me.  I strive to be as wonderful a rock for you as you have been to me. I am honestly going to be ok and that is, in part, because of you. All the times I knew you’d be there when I couldn’t be, thank you. More importantly thank you for being you and being strong for me.  I love you honey.

To my family thank you for everything you have done, from telling me I’m going to be ok to telling me to get my butt up and suck it up.  I love you all and without the love and support from my family I wouldn’t be as strong as I am today. Your strength and positivity is radiating and contagious, thank you for always standing by my side even when I didn’t always know you were there.

A new phrase to which I share with you all

“The pain you feel today, is the strength you have tomorrow!”

Enjoy your day fellow warriors, enjoy your loved ones and enjoy your life.  Until next time…

 

Hello…Again!

Well hello there everyone!  I can’t believe it has been so long since I posted!  I am just making a quick post letting you know I am back and getting everything up and running again. A lot has happened, because of all that I fell into a deep hole and have just now climbed out.

I posted a pretty much complete, but quick update to my YouTube channel  you can check out that video here:

 

Thank you all for being here when I was able to return!  My warriors are what help me make every day with a smile on my face!

I have a lot planned for the next few weeks and I can’t wait.  Until fingers meet the keyboard again.

Keep fighting warriors, you have all the strength you need! I believe in you!

Art is Subjective…

I am a very creative person, and most things shared on my personal pinterest are actually completed at one point in time and they look just as great.  Well I have never tried painting before, sketching yes and it was not for me.  I can sketch a picture in pencil I just would rather have the colors that I put on a page mean something to someone.

Today at about 11 pm I woke my husband from his nap and I sat down at my very hard and uncomfortable dinning room table and decided I felt inspired…I took out my brushes, paints, some water, rags, and my paper and I just started painting.  Of course it has to do with my Illness, doesn’t everything? Well here is my picture, tell me what you think it means or more importantly how it makes you feel?

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A month already!

I have not posted in a whole month and for anybody out there reading I am sorry this month has been a little crazy I think I have scheduled, been to, and rescheduled about 25 appointments just since the 15th of March.  I am going crazy doing all this and I seem to have lost my “medical planner” you know the planner that has all medical dates, information, symptoms, questions, medications, script reminders etc.

So to catch everyone up I have finally started my injections of Ilaris I am receiving 2 injections every 4 weeks.  There was no reaction at the site, the medication is not very thick after it was mixed by my nurse so there was not too much stinging I have felt worse from a steroid in the hip.  It has only been an hour and I feel okay so far no side effects of this medication, but my husband is off from work tomorrow just in case side effects come on later or tomorrow.  I am completely finished with both my months of tapered prednisone, and the side effects of methotrexate have taken over I currently do not have an appetite, and that burning sensation has yet to go away, I also get very dizzy at night I do not know if that is the Metho or the tramadol.

I got my first few tattoos these past two months and my last tattoo, one I have been wanting FOREVER my ribbon butterfly! I will post a picture at the end of my post. After I chose to get my tattoos my mother stopped choosing to “support” me or even try to understand what I am going through.  She figured if I got tattoos, which are extremely painful then I most likely can’t be in as much pain as I am, so I have to be lying.  I do not enjoy the times my mom thinks she is right especially when she is wrong, I have tremendous amounts of pain I do not even have times when I am completely free of pain except twice, while and just after I was getting my tattoos.  During this experience that was supposed to be “very painful” I think I freaked my brain out, since fibro is my brain saying “you are being hurt” when I am really not, I am guessing since I allowed myself to get “hurt” my brain did not know what to do and I just went completely numb ALL OVER!!! FOR 2 WHOLE HOURS AFTER HE WAS DONE!!! I got 2 hours of NO PAIN I felt like I could run a mile ( I did not, but the point is I felt like I was my age for the first time in my life and not 80!)

This experience led me to want to get many more tattoos and I will continue to get them, the sad thing is as I continue to get them my mother starts to tell me negative things and she goes back to hitting me (small tap on the arm when something silly, funny, or dumb is said) even when I tell her it hurts and she says “Oh don’t give me that crap you don’t hurt you got tattoos!” Why do my tattoos have anything to do with the constant pain and inflammation I experience 24/7? I sent my mother a link to How to Understand Someone With Chronic Pain, she publicly commented that she has chronic pain.  Yes she has a bad back and has for many years, but there are days she has no pain at all and feels perfectly normal and it is only when she walks too much or sits in an uncomfortable chair that her back bothers her.  So I tell her is she has chronic pain she should understand what I go through and her response was “Whatever. I don’t know how you got tattoos with so many medical problems.” It truly hurts that she will not let herself even care what I go through because she does not approve of some thing that did not even hurt me.  The irony in all of this is my mom has minor elbow pain and low to moderate inflammation in her blood and she cannot do anything with that arm, she is in the process of an Arthritis diagnosis, she said she just wants to treat it and move on.  I do more than possible with my body and I am in pain to the touch from my jaw down, including my back. My inflammation levels were so high my own Doctor wondered how I was still walking.  I know many people out there with this disease who go through this with their family daily and I feel for you and I am so sorry that we have family that just cannot understand us, but there is this whole community of people like us that will be there to support us and lift or spirits when they are down.

My mom wants pain meds and to feel better I told her she needed to treat the inflammation in her body.  She said she will not be getting on the horrible medications I am on because she will not put up with the side effects for a little pain! That is what I need her to understand the side effects to my medications are a walk in the park (funny, I can’t even do that) compared to my daily pain in my body.

Now I do not want to end this complaining that my own mother will not support me or choose to understand what I go through I just want to let everyone else out there like me know, you are not alone we all tend to suffer not only the same ailments, but also the same emotional and family struggles.  Send me your email and I will email you personally and let you know I am here to vent if you need it.

Also please treat the illness I know Methotrexate, steroids,and biologics have so many dangerous side effects, but trust me when I tell you the complications RA can cause are very deadly and I myself would like everyone reading this to make it to your next 10 birthdays!

my ribbonMy wonderful tattoo that I love so very much!