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
Partner WOD is, in my opinion , the worst damn thing that can be on the board in the gym besides burpees. For those that are physically unfit, the Partner WOD is our chance to drag down our partners and struggle to keep up. That’s not exactly how it is, and if you ask any partner of the unfit, you will get the ” don’t worry about it”, ” no big deal response”. But for me, its like a death sentence.
I know, I know , I am being super dramatic. But picture this if you will. Me, being the new kid on the block again , not knowing ANY of these people and knowing how limited I am . And these folks, I am sure were like, ” Ain’t no body got time for her” (they were all actually very nice, but still ) I could feel the sense of fear in my eyes as the coach was explaining the work out. I even offered to do it by myself so I would not bring anyone down. No go.
It’s not that I don’t want to be part of a team or have a partner – some folks are hardcore, balls the wall, keep track of every rep and push it to the limit. I would never want to hinder anyone’s success. That’s my issue with it. On the other hand , it is nice to have some one to push you.
So the way the workout went yesterday was partner 1 did a run, then partner 2 did a move. There were 3 of us in my group, my set was based on one persons stuff, so when she ran, I rowed. Here is how I did:
35 min AMRAP
Row 506m (rowed while partner ran )
DB Hang Squat Cleans 7.5lbs ( ugh but man it was hard!) 26
Rowed 490 m
159 single jumps
Kettlebell swings 18lbs – 32
Hands Release Push Up – 13 (I was DYING at this point )
DB Hang Squat Cleans 15
Row 480 m
140 Single Jumps
So first off – it was an AMRAP and Any AMRAP I go into praying to the Gods that I can make it through at least 1 round . This workout I was able to due to the fact it was a partner WOD. So yeah , victory ! In my eyes . And I only said “Just Keep Swimming ” twice , lol. Those pushups, man , those were rough .
All in all , I am really happy with the workout I did . I was feeling great and dying at the end – so to me , total success! I really think these classes are going to be awesome for me .
It’s all coming together!
Hope you all have a great rest to your week! It’s Thursday, that means I need to do my shot, it’s a pain in the ass but a small price to pay for feeling better.
This past Sunday I proudly walked in the Boston Blue and Green Walk . It was to raise awareness for Organ and Tissue Donation. My dear, sweet, momma was the recipient of not 1, but 2 Kidneys. She also received countless blood transfusions. The need for organ donation is so high. So many people are on numerous lists waiting and waiting and waiting for organs. Life saving organs.
My mother was such a believer in organ donation and everyone being organ donors. We were so very lucky that we had family that donated to my mom. My aunt and my cousin truly gave the gift of life. They alone gave us so many more years with her that we would not have had with her. There can never be enough thanks to them for those gifts.
It was such a positive day , full of inspirational stories. We completed the walk, it ended up being about 2.75 miles. I had a huge NSV ( non scale victory ) where I actually did the walk without struggling. Like for really reals, I did it and didn’t die, lol. Huge for me. Maybe I am starting to turn a corner.
Here are some pictures from our day :
I only found out about this walk a few weeks ago, next year, I hope to get a big team together for it.
It seems like this month has just sucked on a whole. I’m looking forward to some better days ahead. Sometimes, we all just need a break. I feel like that at some point we are all due to for that break. I think its my turn.
Let me tell you – I feel good! I had a great workout last night. It was tough but a good tough, for me, and it was modified for me , which was great too. But it kicked my ass. I have been searching for a new class. I need to workout. I know what works for me and the classes work. I don’t want to go to regular gym, I need the structure of the classes and the push of the coaches. I have found what I am looking for!
So, I gave it a whirl last night. I was terrified and excited all at the same time. After the warm up – it was go time. The workout was a ladder, work down it, then do it in reverse. Here is the work out as I did it:
125m row – 10 mountain climbers – 40 single jumprope jumps – 10 BW squats – 125 m row – 10 HR pushups – 40 Single jumps – 10 reverse lunges – 125 m row – 5 burpees ( way modified ) -40 single jumps – 10 broad jumps – 125 m row – 10 knee raises ( or knee raise attempts ) – 40 single jumps – 10 knee raises ( or attempts) -125m row – 10 Broad jumps – 40 jumps -5 way modified burpees – 125 m row – 10 reverse lunges – 40 jumps – 10 HR pushups – 125 m row – 10 BW squats – 40 jumps – 10 mountain climbers – 125 m row
My time was 26:36. This , I thought was a great first workout back. It felt great to be working out. And I only said “just keep swimming ” to myself 2 times, lol. Those damn burpees. Even barely being able to do a modified version of them, I was dying. Somethings never change.
I am sore today , but its a good sore and its not a Meganitis sore,so that is even better. I really feel this is going to be good for me and I am excited to be starting this new part of my journey.
Never give up . Even if your journey takes you down long twisted paths, as long as you make your way to your happiness – it doesn’t matter how long it takes.
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.
It’s been a year since I got the midday call from my dad on a Monday, that Mum was on her way back to the hospital. This time for trouble breathing and subsequent low blood pressure and low heart rate.
It’s been a year since the last time we laughed together. Watching Wheel of Fortune in the ICU, and laughing over her insistence that Nurse Steve was Doctor Steve, but if you asked him, he would say that he usually cleans the floors. I went to the hospital after work, like I usually would do when she was admitted. Didn’t matter if it was Lawrence General or Brigham and Womens, I would head in after work. It got to be the norm, even if it was just for a half hour. The plan was to get her temporary pace maker put in until they could stabilize her for the permanent pace maker the next day.
It’s been a year since my mother had to have her temporary pace maker put in . I went to the hospital after work as usual. She was sedated when I got there from the surgery and the nurse said he was going to make sure she was comfortable . We thought things were good, so we left for the night.
Its been a year since my sister Rachel and I went to dinner after the hospital. We went to Burtons in North Andover. We both got some sort of Thai bowl and substituted chicken instead of some sort of Tofu type product. It was quite delish. We ate, dinner was uneventful and we said our goodbyes for the evening .
It’s been a year since I got the call on rt 93 south right before the 128 split. Rach said we needed to get back to the hospital now. I flew off the highway and turned around and drove like a madwoman back to the hospital. I remember I kept telling myself = ” As long as I am not there yet, she is still alive” Like it was a Schrodingers cat situation. I just kept repeating it.
It’s been a year since I arrived at the hospital and found my dad in the parking lot. We made our way inside to the ER since that was the only door that was open. I was greeted by our friend/sister Andrea . I will never forget the hug she gave me. She wrapped herself around me and we held hands as we were escorted to the ICU.
It’s been a year since I felt the stinging of my tears as I walked the hall to the ICU to find my mother in shock. I cannot shake the memory of it. I remember her face and the events like it happened 10 minutes ago. I remember crouching down at the foot of her bed and sobbing and thinking how can this be real?
It’s been a year since the family assembled , rallied in hopes of a positive out come. It is a real testament to my mother and what an amazing family we have . Sitting together outside the cardiac cath lab as they tried to save her.
It’s been a year since the doctor came out and told us our only hope is to send her to Boston since she coded for 10 minutes and there was not much else they could do for her there. My dad would of moved mountains if it meant for a chance for Mum to live.
It’s been a year since the group of us held each other as we waited for her to be returned to her room so we could see her. Our group was 11 strong so we could not all wait in the ICU, we were relegated to the waiting room outside of ICU.
It’s been almost a year since the nurse came down to get my dad and inform us that she keeps coding.
It’s been almost a year since we made the decision that she had had enough. And the next time she coded we would let her rest.
It’s been almost a year since we told her it was okay to go . And that we would be okay. It was the hardest thing my heart has had to do , telling her it was okay to go when all I wanted was for her to stay.
It’s been almost a year since I held her hand and kissed her head and told her how much I love her.
It’s been almost a year since it was August 2nd, 2017 at 12:15 am , when she left that body that jailed her for over 30 years , and became the best guardian angel any of us could ever hope for.
It’s been almost a year since my heart was immeasurably broken .
Not a day goes by that I do not think of her and all the joy she brought to our lives. My heart hurts and I miss her so terribly. I only hope I made her proud and she knew how much we loved her.
Hug your loved ones tight and make every day count.