My world was rocked to the core on August 2nd . My sweet momma, who I know I have written about before, who has been struggling with illness for 30 years , passed away . She was only 61 and far too young to deal with all the shit she had to deal with . My mum was my person . She was always my cheerleader, always my support , always could make me laugh , to say she was incredible would be doing her a disservice. My heart is in so much pain , I can’t even describe it. We always knew we were on borrowed time with my mum. I knew she would never live to be an old woman, but I just didn’t think it would be so soon, and it happened so quickly, I just wasn’t prepared. But then again, is anyone ever prepared to let a loved one go?
It’s a dreary morning here in Boston . Not raining yet but it’s coming . I can feel the change in the pressure and my body is aching from it . The ride in from my home in the morning ( I always get 1st appt of the day ) is usually an hour or more when normally if it wasn’t Morning rush hour would be 20 – 30 mins . But today it was less than an hour . Strange .
So , here I am at another appt with my rhumetologist . Here at Brigham and Women’s . The hospital that my mother frequented . The hospital that saved her life. Making her kidney transplants and various other surgeries . Helping with the internal bleeding she dealt with. Christ , they helped with everything.
Maybe that’s the reason I am so comfortable here . In my quest for a cure for whatever the fuck I have , I have been to 9 doctors . My dr , Dr . Dellaripa, is just awesome . While we don’t have a complete answer , the partial answers I have gotten have all come from here.
The ENT I saw here deduced that my enlarged lymph nodes were being caused by whatever is going on in my body , not an issue with the lymph nodes themselves . That was a huge breakthrough.
So , here I sit . Patiently waiting , when from around the corner, I see this head peek out . It’s my doctor . He tells me it’s going to be a few more minutes .
I should also mention that this is a new portion of the hospital and they give you LoJack when you sign in , ” so they can find you if you get lost ” Like they literally say that to everyone .
So there I am , LoJack equipped when the nurse calls my name for my vitals . We go into the room and it’s the usual small talk bullshit . Then blood pressure time . I need the big cuff . I have been doing this long enough that I don’t wait for the nurses and stuff to try it and fail , I tell them what works so life is easier on me and them . So I make sure she knows big cuff . The first time , yes I said first , the first time my blood pressure is high . I swear it said 149/93 but she said it was 140/93, then she did it again and it was 143/93. I never had high blood pressure until my Meganitis came on . It’s not at the point that we need to do anything just yet , but it’s just another thing .
In steps in the doc , he says ” I haven’t heard from you , I always hear from you , I’m not sure if that’s a good thing or a bad thing .” And he’s right I usually have some sort of issue or crazy flare and I reach out . I explain it’s been basically the status quo. Then I explain about Mum.
Based on the fact I was flaring before Mum passed and the fact that I have endured “an incredible amount of recent stress ” we changed my meds . Not sure if they are going to work out or not . But basically what I am dealing with, What he is treating me as is a rhumetoid variant . I have responding well to metheltrexate. But it’s all subject to change until I have a concrete answer to go with the Fibro . Wonder what the blood work holds in store .
I’m a hard stick and I hate being some med students pin cushion . So I tell them where exactly they need to go . The thing that pisses me off is when they don’t listen . Today , it took her forever to find my vein and once she did , she went in side ways . Didn’t bother me at the time , but man is my arm sore tonight ! What the hell Bitch ! Ugh.
I need to working out . I need to be better . I just need to feel better . I need to just be and just breathe . You know ?
I need to keep swimming . I gotta find my way .
I had a pretty good weekend ! How about you ?
I was up really early on Saturday , 4:30 am , had to be to work for 6 am . Then it was a 10 hr day . Usually after working on Saturday I need to take a nap . I was pretty exhausted when I got home but it was almost 5 so I just kinda relaxed .
We had dinner then I decided I wanted to try and go for a walk . There is a rail trail about 10 mins from my house , so the hubs and I headed there .
Lo and behold , I walked and survived. I survived all 2.4 miles !!!
2.4 miles !!!!
I was dying at the end of the walk but I am so glad I did it .
Then today , my daughter and I headed to my sisters house . First off was some Pokémon Go , my daughter and nephew had a blast . We walked around for a while, had some lunch , then headed back to the house for swimming .
It was definitely not as warm as I would have liked but , I wanted to get some water aerobics (or my version of them ) in .
Man , was I tired after that , honestly, still am . But – again , I did it !
Not only did I get in exercise this weekend , I am down 8 lbs since I got back in the wagon !
Cheers to a great week everyone!
It really sucks . I wanted to work out tonight . But my legs had other plans . I have resolved to be better and more positive about my conditions.
Normally I would be really upset that I couldn’t do what I wanted . But instead , I’m just rolling with it .
The thing is , I HAVE TO . I have to function and more importantly I need to listen to my body . Take it slow when I need to and accelerate when I can . That’s part of the reason I chose the Piyo . I can go at my own pace when I’m at home .
In the mean time , I am eating better and having Shakeology for lunch . I’m happy to report I’m on my way !
I’m in such a better place about this whole process now . It’s a good feeling .
Hope I can make it last !
Gotta keep swimming!!!!
Happy Friday Everyone!
I’m well into my reboot of my fitness journey . And honestly, I am doing way better than I anticipated! I’m still standing !
I have accepted that I need to take it slow and I am in a good place about it . I did the Piyo the other night and then tonight I did 10 mins of cardio , then 15 minutes of Piyo . I know it’s only 25 minutes but something is better than nothing .
It’s strange to say I’m in this place now . But I guess being sick and limited to things will open your perspective.
In addition to my feeble workout attempts this week , I stopped drinking soda . I’ve been drinking carbonated water , it’s fizzy and gives the soda feel . Good alternative I think .
All in all I feel I really good about things so far .
Gonna keep an open mind and keep on swimming 🙂
Hello Big World! I know , I know, its been months. It’s not you, its me, lol. So, if I’m being honest, I have been a lump. I am dealing with chronic illness ( fibro and still undiagnosed “Meganitis ” ) and all the joys ( NOT ) that go along with it and basically just trying to stay afloat in this crazy world. Long story short, I am in pain everyday. And fatigued. Good Lord, the exhaustion ! I wish I could find a way to combat it.
So, I have been wallowing in this pit of dispair and honestly , its been 2 years I have been down , if we are counting . I have let it hold me back and control me and I need to break free . I have read several times that exercising , while it will hurt, in the long run , I will feel better. I think I owe it to myself to explore these options.
Nothing in life would make me happier than returning to Coach Jane and Crossroads . Unfortunately that is not in the cards right now, but I am not writing it off down the road a ways. I need something I can do when I have energy, which means working out at home. I need need something low impact while my body adjusts .
So, I have decided to try something new to see if it helps me. I could be completly wrong and this could blow up in my face, but I am going to give it a go. I am currently on Gabapentin for my issues and let me tell you , I thought I was nuts when I had gained 40 lbs, but it turns out , lots of folks gain weight with Gabapentin. I need a way to combat it, cause honestly , I am less sore when I take my meds and really don’t want to change that up right now.
I joined some Fibro support groups to see if I could relate to some folks and get just some general info. Its a real great forum . Here and there folks would post about if they were working out and the thing that came up more and more was Yoga and Piyo . Piyo is a Beachbody program. After a lot of research and speaking to people, I decided to give Piyo and the Beachbody programs a try. I am a bit nervous since even when I was working out, yoga was not something I was into, but I kinda need this is going to be my wheelhouse for a while.
I plan on diving in tomorrow . I gotta get a yoga mat. I will check in and let you all know what I think .
Hopefully, I can find the balance and shake this funk.
Thanks for coming on the swim folks!
Happy Women’s March Day !
The significance of this day has left me with so many thoughts, I just had to share some.
All this talk of Women’s rights is so vital. If it weren’t for women’s rights, there is no way I could be the person I am today .
This is my body and ain’t no one stopping me from doing what I choose to with it.
I pray I am setting a good example for my daughter to be independent, be strong and to do what makes her happy. I hope these decisions continue to be hers.
I feel I am a hard working , kick ass momma.
I don’t know about you, but I have been seeing so much about ” Super Moms” lately.
You know who I am talking about, Those perfect moms that make it to every performance, every PTA meeting, every field trip, make every lunch (complete with love note ), make every game, take their kids to every birthday party, bakes for every bake sale, sells the most at every fundraiser…. we all know that mom.
I am in no way knocking this, just sharing my thoughts.
But Guess what bitches? It ain’t me.
Yes, I am THAT mom. I never make it to the field trips , the performances, or any meetings. I make it to most games, we go to some birthday parties, never bake for a sale. And on occasion, we might get some fundraiser sales.
“Good Golly Meg, why are you such a horrible parent?” you may be thinking .
The answer is simple and becoming much much more common. I know there are probably thousands in the same position I am in.
I work. I work full time. Monday – Friday and every other Saturday . And when I am not at work, I am still responding to emails and on occasion taking work related calls.I have a good job and I am taken care of. I have been with my company for over 10 years. I would say still = 90 % of school functions that we have been invited to are during school hours. How about throwing us working parents a bone?
I work to provide for my family. I am not ashamed to say we need two incomes for our family of 5. I am so incredibly thankful for the stability my job has provided us.
And while Working Mom Guilt still gets me every time one of these things come up, I still think of the big picture.
My family has gotten used to the food in their bellies and the roof over their heads. I’d like to keep it that way . The clothes on their backs, they like those too.
So, while I may not make it to everything and not participate in every school function, I am still their biggest cheerleader in life. I choose to work to make sure they have what they need and them some. If I didn’t work, we would not be going to Disney in April. I would not have the ways and means to do the things that we do together. Even if it is just going to get ice cream , its creating memories. And I am determined to make sure no matter what , my kids have good memories to look back on .
They may not remember that I didn’t make it to the book fair, but they will remember goofing off with me going for a ride or playing mini golf.
Creating positive lasting memories is what I would like for my kids. I don’t know how I am doing , I’ll probably find out when they have kids.
I’ve been the unconventional mom, I have been the cool mom, I’ve been the asshole mom, I’ve been the young mom
I’ve been that mom that was the youngest in the room , with my jeans and t shirt on surrounded by the “stepford wives ” . I got the stares and looks. Even though our kids were the same age in the same activity ( on the occasion I was able to make it to something) but I had my son at 18 and these folks waited til they were older. Got looks for that too.
I own my shit. I was a young mom. I work full time. I love my family fiercely . I have made bad decisions. I have made good decisions.
I hope that all this talk in the political universe will continue to allow me to be me.
A full time working married mom of 3 who is raising 3 incredible, caring , empathetic, creative, human beings.
Be good to your kids. Be good to your family. Be good to people.
I am hopeful that the next 4 years do not set us back 50.
Good Evening Everyone !
It is with extreme happiness that I can tell you I finally did it = got my tookus back to the gym!
I got my new medication after my rhumetologist stepped in . It arrived on Friday and I started the injections that night.
I am still nauseaous, but it is not as much as it was before. I am hopeful that after a few weeks, it will decrease significantly . The best part is that my doctor okay me getting back to the gym as long as I ” listen to my body “. So, I contacted my coach Jane at Crossroads Strength and Conditioning to see if it would be okay if I came back with my issues. And she said of course! Definitly knew that I was going to basically do everything modified but I had to get moving. ANYTHING is better than nothing, right?!
So, started new meds.
Ready to go back to the gym.
And oh yeah, decided to jump on the Gluten Free train. Let me explain : I had read multiple articles regarding Gluten and inflammation , so I figure, what the heck, I’ll give it a shot. So far I am on day 3. Honestly, this is 2 days better than I thought I was going to do. I’m not sure how long that I can keep it going, but if it helps, I am going to give it a whirl.
I got back into the gym and the warm up itself was already killing me , lol. Onto the workout : here is my severly modified version . No laughing out loud, 🙂
30 wall throws ( like the baby sister of the wall ball ) just tossed the ball at the wall
20 Step ups on the little box
10 DB snatches!!!! 15l bs —–> I LOVE SNATCHES! AND I COULD DO THESE NOT MODIFIED!!!
5 Push ups – these I did standing up leaning into the bar on the rack. Truth be told, I totally could feel this in my arms and chest way more than any pushups I had done before.
I completed all 4 rounds – total victory ! And under 20 minutes!
This was complete baby steps. And this will be for quite some time, I am sure. This time around , I need to do the baby steps. I used to get really frustrated when I thought of how far I had come or how much I could lift or do, but this time, I can’t be like that . It’s wasted energy. I am just going to roll with it and see how it goes.
Its been a productive week so far. Hoping to get back in the gym tomorrow. Starting slow with 2 times a week.
Gotta Keep Swimming !!!!
Happy New Year Everyone!
I’ll admit, I have been quite miserable the last few months. Throwing a personal pity party for myself. I’m sore, I’m cranky, my appetite is horrendous, medication makes me sick….I have been just ugh.
Welp, I am really going to try and change this around.
I need to honestly, or at least dedicate myself to dealing with this chronic pain better.
For those keeping track, we are on 2 years of my body telling me something is wrong and no doctors being able to figure it out.
Current symptoms include: all over body soreness, painful arm pits ( yes arm pits) , side pain ,chest pain, my ” necklace of pain” ( my throat and collar bone area ) , crazy night sweats, fire skin and crazy appetite.
First off, gotta get my meds under control . The metheltrexate i am on is really helping my knees and the arthritis that developed in them , however the medication makes me soooooo nauseous every day ! like every day! i wake up and just want to barf, but i never do, its awful. I just sit and wait for it to pass. Then there is the Prednisone…. ugh, why do they make it so it helps you feel better but you become a ravenous pig?
Anyone else have that issue with metheltrexate? Or Prednisone?
So, my doctors solution to that was changing it to an injectable one, however since i have no “official ” diagnosis and Meganitis is not a recognized disease anywhere, my insurance rejected it.
Ugh. So i was going back and forth with my doctor in messages and getting no where, so I have an appt this Weds. Hopefully I can get on the right path here.
I also am DYING to work out. To say my weight has increased would be a complete understatement, I don’t even recognize myself. I was going to get back at the gym, but then I needed another PET scan and my doctor told me to hold off starting back up .
But, now I NEED to do something. So , I am hoping I can get the ok to start back up , even if its small, and hoping he can do something to offset the appetite.
I never realized just how many people out there are dealing with chronic pain, be it from fibromyalgia, RA or any type of Arthritis , MS, cancers, its really nuts how many people are in the world suffering right now. It’s incredible .
We all find our way to get through the day. One thing that I have found to help with my daily routine is Plexus. It has been beyond incredible.
They only have a small amount of products, but they have been awesome. The Plexus Slim, The Ease , The Nerve , they are all so helpful to me daily. My pain has yet to be eliminated but, it definitely takes the edge off.
Honestly, I catch a lot of shit from people for promoting Plexus, but if they had any idea how much it has truly truly helped me, they would understand. Thats why I share it all the time, if there is someone out there like me ( based on my research there are thousands) that could benefit from these products, as a human , It is my job to share it.
Since I am hoping to be able to start doing some sort of exercise again, looking for feedback from the folks out there suffering from chronic pain. What do you do ? Or do you find that it is too difficult to do anything ? There has got to be something I can do .
Here’s to making 2017 a great year!
Blessings and love to you all!
Things have changed drastically in my life since I started my journey. When I started this, it was a fitness journey. Now my life has become the quest for diagnosis. Not exactly what I wanted out of my life, but this is currently where I am .
So, what does that mean for my blog?
It won’t be as much about weight loss , but rather more about my health issues and daily life. I have to imagine I am not the only one with ongoing medical issues and no diagnosis.
I hope I can share my stories and maybe see some too.
So this is where things currently are in my life medically :
After my disastrous ortho appointment where he basically pressed “repeat” on all the other things doctors have said to me, I went back to my Rheumetologist. I gotta say, I do really like my Rhumetologist, Dr. Dellaripa. He actually is very up front with me and pays attention. Out of all of the ones I have seen, I feel like it is just as frustrating to him that we cannot figure this out as it is to me.
Dr. Dellaripa wanted to do an MRI. My knees were in excruciating pain. So , I was down for whatever. I go in for the MRI and the person at the desk asked how my veins were for the contrast. I told her good, I ,had had contrast several times before. They call me in.
I’m sitting on the table waiting for the IV. And he starts to get me into position for the MRI. I questioned , wasn’t I supposed to have the contrast? He goes back and double checks the order, nope, not supposed to have it. We proceed with the MRI. He puts my knee in this boot type thing to keep it down. I thought I was going to scream. It was so painful not being able to move my knee at all, it being locked down in this thing was just horrible. I was just about to hit the ” help ” button they gave me to stop if I needed to, when it was over. Thank God!
Fast Forward to the next day, Hospital calls me and apologizes profusely that they screwed up and I need to come back to have the MRI done again …..WITH CONTRAST!
To say I was upset and pissed is an understatement. This was complete bullshit.
It was so hard to walk after the first one, I am so glad I had my husband go with me. I was literally hanging on the railings in the hallways to help me walk. So, I was really not looking forward to this one.
This time, they gave me the contrast and it was not as long, thank goodness.
Results – I have arthritis in my knees apparently . It wasn’t there 6 months ago. Also still have enlarged lymph nodes everywhere. Even my knees. Who even knew you have lymph nodes in your knees? And of course mine are messed up . Dr Dellaripa decided that we are going to treat me with Metheltrexate for the arthritis for the time being. I had already been tested for Rhumetoid Arthritis and everything came back negative, but he knew I needed something. The plan was to start the meds and go back in a month.
It was definitely a rocky road starting the meds. Took a few weeks to kick in, to the point where I am now on a low dose of steroids. But it has been about 4 weeks and there has been a lot of improvement. My right knee is currently pain free. My left knee is still sore, but it is way better than it was . I even did 5 flights of stairs last week – and survived. Crazy, right? Able to fully walk when done. Don’t get me wrong , I was sore , but I was able to keep pace with everyone for the most part. A victory!
This brings us to last week. Knees aside, I have not been feeling all that great. My armpits have been killing me – big indication that I am in the middle of a flare up . I have not felt any enlarged lymph nodes, but I guess this is their way of letting me know, they are still here. So, doctor is sending me for another PET Scan , went for more blood work and now
I need to go see a Hematologist.
I flat out asked the dr if its possible that this is cancer and its a slow developing one or if its possible that it could turn into cancer. His response was ” absolutely “.
Call it naive, call it frustrated, call it fed up , but I thought cancer was off the table. I guess its on the table, I guess everything is on the table.Bone marrow test too is on the table. Its like a viking table. Huge and ginormous and full of crap.
I’m looking at things differently than I did before. I am sick, no one knows how sick. And some days are better than others. But I can’t stop living my life.
So, I am not going to stress. I can’t. I just gotta go day by day and enjoy things as I can . I know some days will be better than others . And some days is better than no days. I’ll take what I can .
I have a busy week ahead. Hoping for minimal to no flare ups.
Hoping everyone has a great week !