I had a good run. From February to September has been the longest time I since I got sick that I have been relatively flare free. A few small little flares , but otherwise, its been good. The past month or so , I have noticed the flare getting worse. It hasn’t subsided.
Arm pits sore, necklace of pain in full effect. Whole Body soreness. I know I have said it before, I am so fucking over this.
I have an appointment with my Rhumy coming up, I am not even sure what he can do at this point. But I am going to try and be positive. I am hoping maybe something will explain why the sudden flare.
Its very hard to be positive. I am trying, I swear, its just so damn hard. No one understands , because no one knows what the fuck this is. Like, if you have a disease, chances are there are other patients who you can relate to and who understand what you are going through. With Meganitis, I ain’t got shit.
While I am thankful that this is not something that has killed me and I am thankful it is not worse than it is, it truly is awful. I have resigned myself to the fact that this is something I will never be able to give a proper name and that I will have to deal with the rest of my life. I just wish the treatment was working.
It’s a terrifying thought that I will potentially be in pain for the rest of my life. On the Brightside, I guess I can say that I now have a high tolerance for pain.
I am sorry for throwing the pity party. Some days this really just gets to me and the constant pain I have been in today is exhausting.
Thank you to all of you for coming on the swim with me. The ups and downs , its nice to have some company on the ride.
The past few days , good ol’ Meganitis has been reminding me that she is still here. My damn armpits are hurting again. Yup. It’s as wonderful as it sounds. I am really trying to not let this rule my life as It has. There are surely going to be days where I need to listen to my body, but I am just getting back into working out, so I was determined to go last night.
It was a long work out:
1 min of each for 5 rounds, 1 min rest between rounds
Burpee Tire Flips
DB High Plank Rows 7.5 lbs
Goblet Squats 15lb KB
Going into it I was worried about the burpee tire flips. Burpees + Me = No Bueno. My burpees are terrible, I am limited on how I can do them with my knee and my mobility, but I can do a modified version. I managed to do about 3 each round, I found that to be a victory.
The thing I struggled he most with was the DB High Plank Rows. And I was only using 7.5 lbs! UGHHH. Sweet Baby Jesus were my hands killing me. Its a lot of weight to be resting on those dumbbells. I didn’t think I would struggle with it as much as I did, but man was it hard. At one point, I tried to pick my hand up and it just would not go. But I didn’t give up. I was slow but I kept at it.
I think another thing that is affecting me and the Meganitis is the weather. It’s been pretty rainy here and it does a number on me. As I type this , my armpits are throbbing. I can feel my lymph nodes enlarging. I am just praying that I can hold the Meganitis at bay.
Having a chronic illness sucks. Not knowing what it is, sucks worse. I know it could be way worse and by no means am I having a pity party. It just sucks.
Getting into a mental state of mind where I can let go of the illness and just be me, is not easy. It is hard to get in a mindspace that I can be stronger than this and I can’t let it rule my world.
Honestly, today I have felt like I just want to crawl in bed and not move, but its after 10 pm and I am not even in bed yet, lol.
It is a challenging journey that I am on. I can only take it day by day and
Well, this weekend, I overcame a big fear of mine. I went to my 20th High School Class Reunion. I wasn’t going to go, honestly. But I made a last minute decision to go, and I am so happy I did.
If you are a reading of this blog, you will be aware of my long deep seeded self esteem issues. I was not popular in high school, but I had friends, I was however – skinny. So skinny I thought I was fat. (This current body is God’s cruel irony ) So, given my current status – I weigh more than 100 lbs than I did in high school. I was not not exactly jumping on the high school reunion band wagon . Not that I could give 2 shits about what people think of me, but I didn’t want to be THAT person…. You know what I mean.
The more I thought of it though, my friends that I still keep in touch with from high school would be going, it would be nice to see them. Then my mom crossed my mind. She was Miss School Spirit. Cheerleader, color guard, on her reunion committee, if she was here, she would of made sure that I went.
So, I went . Not only did I go, but I put together the slide show for the event. ( And it worked, lol! ) My mother would be so damn proud. I had an incredible time. It was wonderful .
I did get dressed up. My sister Caitlyn did my makeup. I felt good. My fears melted away. I danced the night away with my gals.
When I was in high school my depression started. I felt horrible about myself, for no other reason than I was a moody teenager. No one made me that I way, I just was. My depression has followed me ever since , like my shadow. I would not say that I am as depressed as I was in high school, but I could definitly say that I am depressed.
It was weird, I got anxiety. Like super anxiety, on the way there. I wasn’t sure if people would recognize me. Granted ,I have been over weight since right after high school, but I just felt super self conscious. To boot , our name tags had our senior pictures on them, so I was dreading wearing my old face all night while people would be seeing my current face.
In the end, I overcame my fear and went to the reunion. I had a great time and those little fears I had going into it faded away .
My next fear I am trying to overcome is my Meganitis. I have been relatively flare free since February when I started the Actemra. Which has been amazing! But lately, little things are creeping up. My armpits were hurting last week, my fire skin is acting up ( though that really never went away ) , the advanced exhaustion that I get hit me like a ton of bricks the past few days , and today , I noticed I am sore. Mainly my legs, and not my arthritis knee,which fucking sucks.
We are in the midst of a crazy heat wave right now, its been in the mid 90’s, I am really hoping that my symptoms subside when it gets cooler. Tomorrow is shot day, Thank God. As much as it sucks not knowing exactly what my Meganitis is, at least I have holding it at bay. My fear is that another flare stretch is coming on and if its as horrible as the last one, I just don’t know what I will do. I am keeping an eye on it. I am thinking a visit to the rhumetologist is in the future, BUT I am going to be positive and not let the fear of my unknown assailant take me down. Fingers crossed that this passes . Especially now that I am trying to get my ass back into the gym. I need to workout.
All in all , fear can swallow us whole if we allow it. Overcoming it , now that’s the challenge.
I am gearing up for my weight loss surgery. It will be taking place mid June. Some of you may know that there is a process to this weight loss surgery, the process isn’t bad. It is interesting . I have done my first 2 nutrition appointments and met with the surgeon. Next week I have , nutrition, psychiatrist and endoscopy. Since I started , I have been trying to make changes so that once I have the surgery its not so bad adjusting.
First up -no bubbles. Not supposed to have carbonated beverages so I cut out soda. I was drinking sparkling water to get the bubbles thinking it would help me, but I had to cut it. I have been drinking my 64 oz of water each day .
Protein – I am going to start getting some protein shakes since day 2- day 9 after surgery will be all shakes.
Anyways, I have been trying to get moving more and this week I have been really thinking about my Mum. Probably the impending Mother’s Day holiday.
I was driving along this weekend and I started squeezing my butt to the beat . I can hear my Mum now, her proudly proclaiming how she would do her butt squeezes to the beat of what ever song was on… Maybe if I keep it up, I will have ” Buns of Steel” lol.
I was cooking dinner the other night dancing around the kitchen, and all I could do was think of Mum. Dancing around to One Direction, no less. Ridiculous I know, but have you listened to them? So damn catchy! Current obsession is ” Steal my Girl” and “Perfect” . I ain’t too proud to admit I am a grown ass woman dancing around to a boy band that’s not NKOTB or Backstreet Boys. ( for the record, saw NKOTBSB in concert at Fenway Park – UNBELIEVABLE Show!)
Its these little things that I feel Mum shines through. I know I am probably searching for signs and finding them in places, but its comforting to an extent, like there are pieces of her here with us .
Like tonight, I was taking a ride to go see her, her headstone is in. I needed to see it in person. So I am driving along and ” Beast of Burden” by the Rolling Stones comes on . I don’t remember downloading it, could of been the hubs or maybe the kids, but in any case, there it was blaring out. My mother and I had this running joke – I was forever singing ” I’ll never be your BIG SUBURBAN ….” instead of Beast of Burden. So there I was crying my eyes out on the way to my mothers grave singing at the top of my lungs
” I’LL NEVER BE YOUR BIG SUBURBAN !!!”
I know she is always here with me, I just like when she reminds me in funny ways.
Back to my weight loss stuff – I am currently down 5 lbs! I am looking forward to the surgery . I know I have the best Guardian Angel on my side 🙂
co*num*drum – a confusing and difficult problem or question
Its no secret that I need to lose weight. Now more than ever.
I am like the Stay Fucking Puft Marshmallow Man.
I am the first to admit, I am by no means a healthy eater and it has been quite some time since I was able to do a proper workout. I would love nothing more than to get into the gym and lift heavy shit. I am so hopeful that this new medicine will allow me to resume my life.
Have you ever felt trapped? Try being trapped in a body you don’t recognize. I feel like the real me is buried underneath these layers of blubber and she is drowning. Suffocating. She is disentergrating. It’s like I am stuck in here and my skin is going to burst.
Here is my issue – and by no means am I making excuses or blaming someone else for my situation…. The fact of the matter is very simple.
Up to the past week, I hurt. My whole body was sore. It is very difficult to do anything when you are in pain. So maybe it is an excuse, but it is the reason I have not worked out or done anything remotely resembling exercise. I don’t eat good either, can’t blame that on anyone either. Current status is wicked sore left knee. Fuckin arthritis. UGHHH
I have allowed my disease to rule my life. I am not proud of it, this is a badge I do not want. But sadly , this has become my reality. And not for nothing I do not even have a name for this disease. I have a faceless demon ripping my life from me and I can’t even blame anything for it. Its frustrating as hell.
Whole body pain
These are for the most part, daily occurances. While I have had some relief from the pain depending on the different medication I have been on , it always comes back.
Tonight I will do my 6th Actemra injection. All in all, so far, the whole body pain has subsided and the fire skin has too. My knees are killing me, but I am pretty sure that is more due to my ridiculous weight gain.
So here I am , wanting to work out, wanting to be a better version of me and here I sit, broken. That is my conumdrum.
When I went to the Sleep Disorder doc, she recommended that I check out the Center for weight Management at the hospital. I said yes, figured I would get some tips and tricks and maybe, just maybe , be able to jump start my weight loss.
I am stuck in a vicious circle.
Need to lose weight —> In pain and hurts to move so I can’t exercise —> depressed about it all —> Eat more and move less due to the pain and depression —-> Miserable all the time —> always exhausted —> New medicine ( yay!) —> soreness subsides EVERYWHEREEXCEPT MY KNEE! —-> Finally feeling better —> can’t do shit cause my knee makes it hard to move— Back where I started —> Need to lose weight
So at the appointment I get weighed in of course. And the number is the highest it has ever been, like disgustingly high. Didn’t help that I had to do it twice cause the nurse asked me to get on the scale then walked away, like I needed to see those big red numbers twice. Ugh.
Then as I sit reeling from the metaphorical weight of my physical weight, the nurse lightly says ” I’ll take of 3 pounds for shoes and clothes”.
BIG SHIT,what difference does 3 pounds make?! Is that supposed to comfort me?
Doc comes in and I go over my history while she takes notes and reads my file. When your doctor says ” oh boy ” multiple times….. kinda sucks. So she non chalauntly says I am definitely a candidate for surgery, particularly the sleeve version. Because of my ” complex medical history” and my ,current medications, she did not feel that putting me on the common weight loss pill would be good for me and would cause issues. She prescribed a hormone shot that I will do every day that should help with cravings. Of course I need to wait for the insurance to approve it, so , not sure how that will work just yet.
So , here I wait. I was told the surgical team will call me to start the process and make sure I qualify. And all my doctors need to approve as well. 1st step is an informational meeting that I need to attend.
I have to be honest, I never imagined that I would be someone considering weight loss surgery. And I know that my current state is of my own doing , and if I do the surgery , to be successful I need to change a lot. And did I get some help from the meds I was on? I am sure I did, but I can’t blame being morbidly obese on them.
My life is my fault. And maybe if I didn’t weigh so much , my Meganitis would not be as bad. Who knows? All I know is that I need to do something that gives me a fighting chance at feeling better. Everything is connected.
The absolute worst thing about all of this weight shit is I did it to myself. Its completely embarrassing being this gross thing that I have become.
Sometimes, I just don’t know who I am . Like there is a version of myself I see in my head and she sees the outside and can’t get out or be heard. I know I am a crazy person.
I just want to be happy. Happy in myself, happy with myself, Happy in this life. I just have 37 years of failure to contend with. Isn’t it awful that more often than not, we are our own worst enemies?
Cheers to new hopes on the horizon…
Just Keep Swimming and Don’t Stop Believing,
You read that right, I am a 37 year old mom of 3 who needs to take naps. So damn what?! As I am sure that anyone with chronic pain issues will understand the utter exhaustion that grips a hold of you every day . While I am not experiencing the pain I have been as of late, the exhaustion never goes away.
I was recently outfitted with a CPAP machine. I have “Severe Obstrusive Sleep Apnea”. I went into it imagining myself like Darth Vader with my mask .
Instead, I am more like Dark Helmet. If you have seen Spaceballs, you know what I am talking about, and you have a wonderful sense of humor! Anyways, my point being, my hope was that when I got the mask I would have all this energy and be full of life since I was sleeping better. And yeah, no, not quite. Don’t get me wrong, it is definitely helping me. My first follow up with the sleep doctor showed that I went from 66 times an hour not breathing to 1.2! Pretty impressive… but still the exhaustion remains.
Just another symptom of Meganitis.
So yes, when I need to take a nap , I NEED to take a nap.
It is my hope that my exhaustion will get better. But for now, I am a sleepy head.
This week has been particularly awful as far as my Meganitis goes. This is the most pain I have been since this whole thing began. On the positive side though – I started the actemra this week after several rejections for this and other medications that might help. Just in time too – my inflammation is way up, blood work was high. Down side is that it could take 3 weeks for this to kick in.
So, my life right now is just ugh. I have been trying to be positive about everything but the struggle is real. It is very hard to maintain any sort of joy when you are in constant pain.
To be honest, I started this post last week, its been sitting here brewing, all my thoughts jumbling around my brain. I want to say so much but its just hard to get out.
So yes, last week was one of the worse on record for me. In addition to the excruciating pain, my inflammation was “way up ” per my doctor. I started my new medication, I am doing Actemra shots every week. I have been rejected for other medications by my insurance company and last week came THE talk with my doctor . You know the one, the one where the doctor says ” Can I be honest with you?” you say ” yes of course” and he says ” I don’t know what is wrong with you and we are trying everything I know . Nothing is getting better and you are getting worse. If this doesn’t work, we may have talk about if I am the right doctor for you or a visit to the pain clinic”
To sum up :
No Stills disease which he previously said I had
Getting worse, not better
Inflammation way up
Actemra is my hail mary pass – if it doesn’t work not sure where we will go, co pay is $40 for a month supply, pricey , but if that is what it costs to feel good – so be it
My “foggy brain” seems to be fixed by switching my Gabapentin to a different med at night ( I guess 1500 mg is a high dose?) That I have definitely noticed a difference. I was not as forgetful and felt like I had a clearer head.
I capped off the week taking time off from work to rest. I have to say, doing nothing for days was exactly what I needed to recharge. I did my second Actemra shot last night and returned to work today .
It is so hard not to allow this demon sickness to take over my life. It has so much become who I am and I fucking hate it. And as much as I hate it, I don’t know how to change it. My day to day depends on something I cannot even put a name to. I have no fix , I have no cure, I have no name . I am a guinea pig after 9 different doctors. What is the most shocking is that these are the best doctors in the world and they still do not know the cause of this. Its getting old hearing ” maybe they will name a disease after you …” Like fucking really ?
I have to think about every step I take, and if the pain is bad enough, I have to think about how I will sit, how I will walk or hobble.
It sucks being in constant pain. It sucks being constantly exhausted. It sucks having skin that feels like it is on fire. It sucks having your armpits swell and hurt. It sucks when your neck hurts. It sucks getting random lumpy lumps ( thank God, I have not had in quite some time ) It sucks looking at yourself in the mirror and seeing a completely expanded distorted unrecognizable version of yourself. It sucks not being able to move and exercise to make yourself the person you knew.
Pain is ugly .
Pain is strong. Much stronger than I thought.
And I am weak.
I keep trying to find the way. Any way that I can resume my life and get out of this mud filled funk. I hate feeling the way I do . And I know , you are probably saying , suck it up , or change your life then, but if you have ever been in never ending pain, you know it is easier said than done.
Like seriously , when will it end?
Soooo, bringing us to today :
I actually feel more better today than I have felt in a very long time. I want more than anything to declare my love for this medication , thinking that it is responsible for this feeling, but the pessimist in me tells me to hold off on that parade just yet.
I felt better today and that is a small victory that I will take and hold on to. I have gotten much better with the acceptance of the little victories instead of getting pissed I am not well. I can only hope that I will continue to go up from here and not slip back down into this pit from Hell that my life has succumbed to.
I like to think that I am a strong person, but to be honest, I just want to curl in a ball on my bed and wait for this to pass over. Wishful thinking …. that it will actually pass. I have definitely become more of a headcase through this, which sucks. I am looking into therapists to see if that will help me at all.
I don’t feel normal. Like what do you say when someone says ” How are you ?” do I lie and say ” Great ! Never better !” or do I tell the truth and say ” I’m in a shit ton of pain with no end in sight, how you doin’?” Then I have to explain everything, which for folks to understand what I have going on, I have to do it.
Maybe I will print out cards to carry around with me….. ” Meganitis , the bad and the ugly, there is no good…”
I think of my mother everyday and I how I want to make her proud. She dealt with so much medical crap, I don’t know how she did it. I wish I had one ounce of her strength . She dealt with so many things medically and she never let it affect her spirit. Mean while my spirit seems to be sucking me away like the bad spirits in he movie Ghost
Mum didn’t stop believing and I have to believe there will be better days to come.
Until then, I will Just Keep Swimming… cause ….
Don’t Stop Believing and Just Keep Swimming , feels good to say them together .
Good words to live by, guess I need to take my own advice…..