Don’t Stop Believing 

Hi Everyone, in usual fashion, I get going and get some wind in my sails to have my boat smashed upon the reef. This month so far has been the hardest I have ever had to deal with in my life.

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?

I’m not. I have been struggling to put into words how I feel. And I still just don’t know. I want more than anything to be able to give my mom a hug. And I can never ever do that again. I want to talk to her on the phone like I used to do daily .  I still pick up the phone to call her , then breakdown realizing why she is not going to answer.

It is so hard .  I am thankful I was there with her at the end and we have such an amazing support system.

My mother dealt with more horrific medical bullshit than 1 person should ever have to endure.  But through it all, she attacked it with humor.  Seeing the brightness through the storms.  The night before she passed away, we were literally laughing and making jokes, all the while she was in ICU with an extremely low blood pressure and low heart rate.  I am so grateful that my last words with her were words of joy and laughter. I am grateful she doesn’t have to deal with this anymore.  30 years of being sick, can you even imagine?  Strength personified.

This is where I am just lost.  I am trying so hard to find the positives and to be like her.  See the light through the dark. Don’t stop believing, don’t give up hope. Have faith.

All that yada yada bullshit I am trying to convince myself of. That is what she would of wanted. I know my mothers strong belief in “laughter is the best medicine ” and                ” positive thoughts ” is what kept her here with us for so long .  I am just searching for my thoughts to believe in I guess.

My mother was a complete nut.  She would light up the room with her infectious humor . She would make you laugh so hard your sides would hurt and you were in tears.  I am thankful I have a treasure trove of memories to look back on with smiles.

This is how she would want to be remembered, her legacy should be love and laughter through darkness and despair. I’d like to think the send off we gave her was fitting .  My sister did an obituary that everyone coming up to me at the wake was saying they have not laughed so much while being sad.  That’s mum to a tee. We did a slide show with all her favorite songs playing, being the classic rock fanatic  she was, ending with none other than Led Zeppelin’s “Stairway to Heaven”.  For her funeral , I delivered the Eulogy.  How the frack I got through it without breaking down , I will never know. My cousins were placing bets that I would not make it, lol.

You ever watch those Hoarder shows? It seems that 98% of these folks start the hoard when tragedy hits, like losing their mothers.  I used to think to myself, “These folks are nuts, I would never live in a literal pile of feces and stop using the toilet all because my mom died.” Not saying I have changed my mind about that stance, I can understand how losing your mom can send you over the edge.

I know I am no different from the millions of other people in the world who lose their moms, their dads, their people.  And this is not the first, 2nd , 3rd , 4th or even 5th time I have dealt with death.  I just wish I hadn’t joined the ranks of folks without moms.

I need to honor my mother. I need to live the best life possible. I need to be crazy and nuts and follow every dream .  I just wish I knew where to begin.  I guess blogging is a start. I need to get back on track with my fitness too. She was so proud of me.  I don’t want to fail her. In life I feel I failed her so much with all the choices I made.  I know she didn’t see it that way, but I always felt like I did. And she would always give me a hug and say ” I love you , my Meggie”.  I would give anything to hear her say that again.

I know I will find my way, I know it will get easier. I just wish I could figure myself out.  It doesn’t help that my Meganitis/ Fibro crap has been flaring and I have been in excruciating pain this week.  I have an appointment on Friday so maybe we can get some sort of answers on something.

If I could leave you with anything about my mother that you should know and you could carry with you , it is Don’t Stop Believing .  Believe in hope, believe in love, believe there is always a way, believe that everything happens for a reason, though we always don’t know what the reason is. And believe that it is ok.

 

Beautiful Momma

 

Don’t Stop Believing

Don’t Stop Being Silly

Cherish Your Loved Ones

Never Stop Swimming

ALWAYS HAVE HOPE

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Weekend Wrap Up

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 .


I was in the pool for about 45 minutes , running , walking , did high knees , jumping jacks and some actual swimming .  

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! 

Trying Something Different

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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!

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Happy New Year!

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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?

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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!

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Things have changed

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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 !

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A New Approach

Hello Everyone!

I know its been another 2 months since my last post.  When I started this blog it was to share my chubby girl in the gym stories, feelings, struggles and what nots.  That was in 2013.  And honestly since the end of 2014, my health has been an issue that keeps popping up, rearing its ugly head.  Current status : head being reared loudly.

I love to write, I love to get out my feelings, I can’t hold shit in and I can’t act as if nothing is bothering me. I just can’t , I’ve tried, believe me, and in the end, I wear my heart on my sleeve. It’s just who I am.

So, I am going to be here more often, and maybe not necessarily about fitness as my body allows, but maybe just about life and the way things are , are going, and how I am feeling.

I hope you will continue to join me.

So, where am I at today ?

I have come from enlarged lymph nodes, to removed lymph nodes, to no cancerous lymph nodes, to abnormal lymph nodes, to abnormal blood work, to lit up thyroid, to prehashimotos, to lowest IG-2 the immunologist has ever seen in someone who is not on chemo, to whole body soreness, to even more blood work, to still no answers.  All we have concluded is I have immune deficiency.

Fast forward to this year, the whole body soreness  is gone other than my knees. I started taking my Plexus . 

To say that Plexus helped my soreness would be an understatement. I virtually erased it after 2 weeks.  I am so beyond grateful for discovering it.

Now, once my whole body was not sore, my knees felt left out and decided they would start acting up.  At first it was my left knee, then slowly the right, now its both. Feels like bubbles on my knees. Like in the Incredibles, when Mr. Incredible sets off the tracker and he is hit by all those black blobs, yeah, so it feels like that , I would imagine.

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Yeah so that is what my knees feel like. Sucks, cause everything else, was good!

Ugh Freaking City.

I went to my doctor because my legs were getting swollen too, and I had gained some weight, so I thought I was retaining water. They put me on Lasic. Yeah, did not do crap other than make me pee like crazy. So it was not water in my knees.

Went back to the doctor.  Now, obviously I am extremely overweight and my thought was this is because of that. Doctor gave me referral to an Orthopedic dr and also gave me a prescription for something to help me jump start my weight loss while I really could not exercise , or even go for a walk. Stairs are the enemy.

That stuff was Amazing.  But it was only for 15 days. Deal was,  I got to orthopedic, then go back to dr after that to discuss what was planned and further discussion on the weight loss pill.  Thing  was that my appt was for July 5th, in my line of work, taking off the day after a holiday or even taking time off on the day after a holiday is just not feasible. It honestly causes more problems than its worth. So I tried to reschedule. I was on vacation in the middle of July, of course they could not get me in. Leaving me with an appointment this past Friday .

I went into this prepared to recount my past almost 2 years of issues just incase it was important, but honestly had prepared myself that I am a Fatty McButter and this is the latest in my self destructive path I seem to be stuck on.

They did my vitals, they took my X Rays, they listened to my story about my quest for answers for my unnamed disorder/disease/ what ever.

Doctor comes in and we go over my issue.  Looks at my X Ray and drops the bomb that , my knees are fine. Perfect. In fact the knees of a 20 year old.

Pump the damn brakes. WTF?

My knees are perfect. Perfect spacing, perfect knee caps, freaking perfect. No sign of any distress due to weight or anything else. At this point I just start tearing up. Cause I was expecting this to be – you are a fatty, lose weight and your knees will be better. You will be able to walk and feel human again .

Instead I am told my puffy legs  and knee pain are most likely due to inflammation from an ” unnamed disease ” that I most likely have .

He then goes on to list all the things I should be tested for.

Lyme Disease – Been there done that and all its variations

Lupus – yup

Rheumatoid Arthritis – yup

Sarcoid – yup

Among other ones, it was like I was sitting there and someone had recorded all the other doctors I have been to and this guy was pressing play. I was devastated. I know I have no technical diagnosis, I know that I am just trying to get by in life with some relief and I need to be conscious of my condition/disorder . I think from now on, it will be know as Meganitis, at least that is what the girls in my office call it. I think it works. But how weird is it that , this guy would come out with the same thing? How is it that they all have this same damn answer but no one can fix me? Talk about damaging.

So, as I sit there in tears, cause I just can’t with this shit anymore, he tells me I should see a Rhumetologist. Told him I have one already . Told him the meds he put me on for my soreness when I flipped out on them because I was beyond miserable, turns out it is just a glorified advil, which explains why I did not get much relief from it .

I am sitting there, utterly defeated and I said some folks told me a Cortisone shot might help me. He said we can try that for sure, it probably won’t work, but if it does, you come back every three months and we can do it.  I jumped on it. He did them in both knees. And confirmed there is no fluid in my knees . He told me it would take 24 -48 hrs to kick in. That was Friday, it is definitely helping, the extent I guess I will know tomorrow. I am certainly walking better. I am still calling the Rhumetolgoist on Monday , who will prob send me back to Immunologist so I can see what is up with all my crap.

I am hoping I can get to a point where I can get back into the gym.

GOOD LORD I MISS IT SO MUCH!!!!!

I am going to get self loathing here, but just let me rant.

I hate my body, I hate the way I look. When I am able to work out, I know I still look the same, but I feel better cause I know I am working on it. Not being able to even go for a walk is really just a killer. I had 2 weddings in July. I spent money I had no business spending on getting my hair , makeup and new dresses. All in an attempt to feel pretty. And I did, for the first time in so long I really felt beautiful . I got so many compliments, even from chicks in the bathroom, lol, not from my husband, but that is no surprise. When she was doing my makeup, I could not stop looking in the mirror. I just could not believe that was me. I wish Naomi could follow me everywhere, lol. Must be what a Kardashian feels like.

Here are a couple pics :

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I took a lot of selfies, I will admit it

 

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Me and my baby girl

 

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Typical full body bathroom selfie – Dress :Amelia, Lularoe – Love love love

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Me and my gorgeous sister Caitlyn

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Me, my Dad, Caitlyn

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

On both of these days, I felt like a million bucks. I would really love to feel good all the time. I just need to get there. Hopefully I am on my way .

In other news, my kids are all growing up. It is hitting me like a ton of bricks lately . My oldest, Tyler is going to be a senior this year and has decided he wants to go into the Army. He has taken the Asvab and is working out so he can be in top condition for his physical . On one hand, I cannot tell you how absolutely proud of him I am . This is such an adult decision and he is working on things he needs to, to get there. On the other hand I am beside myself because my baby will be gone probably at this time next year. I see his face everyday. I know this is a part of growing up and getting older and this is the process of life. I don’t see my parents every day. I’m okay. But Ty, is my baby. All my kids are my babies. No matter how old , no matter anything. I know I have a year to process the gravity of this and I call I can do is pray that I created a good human who makes good decisions. I think so far, we have done a damn fine job.

All in all, I have been in a really bad place lately , I guess the good part is, I realize it. As opposed to before in my life where it would just swallow me whole.

Thanks for letting me rant. Hopefully I will have a better report tomorrow on the shots!

 

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