In the past week , I have had to try to explain Meganitis to new people that have come into my life. And I realized, its really difficult to explain this undiagnosed disease/disorder/sickness to people. So , in the neverending quest to get the information out there regarding this illness in the hopes there could be someone else with the same affliction and I could finally get a diagnosis. So here goes…
What is Meganitis?
Meganitis is the name I have given to a sickness that started in 2014. It started with enlarged lymph nodes. Multiple scans and tests, biopsies and the end result was inconclusive. That lead to more doctors, more tests and more scans, this time in Boston. Again , no answers. All tests showed that something was wrong , but nothing indicated what it was. Symptoms happen in a flare up and flare down situation. Unfortunately, this has not subsided and the symptoms continue to plague me to this day.
What are the symptoms?
*enlarged and sore lymph nodes
*whole body soreness
*extremely hot ( fireskin ) or freezing ( icicle skin )
*rash ( this was very early on and has only happened few times since beginning )
*elevated SED rate (bloodwork)
*elevated CRP ( bloodwork)
Is there a cure?
No. No cure as we do not know what it is.
Is there a treatment?
Yes. Thankfully. I have tried Prednisone, Metheltrexate (pills and injections ), Actemra, Humira – all failed. Currently treatment is Rituxan. I go for the infusions every 4 months.
Can I catch Meganitis?
No, you are not Megan.
I hope this helps in trying to explain Meganitis. I will keep you updated if we ever find a answer.
“Scar Tissue that I wish you saw…”-Red Hot Chili Peppers
Howdy Everyone, Hope you are all doing well while we are still in the middle of a pandemic .
As most of you know , since Halloween 2014 I have been struggling with an undiagnosed illness. Flash forward to present day and we are at a place of treatment. I have been getting Rituxan infusions . We moved them up from 6 months to 4 months . It was great timing since a flare has been brewing .
Yesterday I had my treatment. I had a great nurse , they have all been pretty great and kind but yesterday, he was awesome . He sounded like Agador Spartacus from The Birdcage .
I’m a hard stick for blood work or anything to do with IV’s or infusions . So I make sure to tell whoever is doing the sticking where the best place is . It’s worked well for me and I have not been a pincushion since I adopted this practice . However , yesterday , upon trying to stick me , the nurse noted that I have a lot of scar tissue in my arm where I usually get stuck at .
It’s silly , but it never occurred to me that this could happen . It sucks. I am going to most likely be a pin cushion again. It sucks cause for some reason, in the realm of this undiagnosed journey, I felt like I had some control over a tiny aspect of this bullshit. I could control where I was stuck. You know what I mean?
We moved my appointment up from 6 months to 5 months, now I am at 4 months. I think that is the sweet spot. The past couple of weeks I have had the exhaustion setting in and within the last week my armpits started flaring up as well as my neck getting sore too. I am hopeful that by doing the infusion now, I will not be subject to a bad flare this winter.
So , infusion went as planned, no issues…. until Thursday. Allergic Reaction. Ugh. I woke up with my face on fire and it was red, blotchy and I had some swelling. To the point where I had to leave work and run to CVS to grab Benadryl. I was at work so I only took 1 pill. Didn’t work and instead I was kinda out of it. I got a hold of my doctor who told me to take some more Benadryl and if that did not work, head to the ER. So, I headed home to see if I could avoid the ER. Thankfully , a few Benadryls and some sleep helped the reaction wear off. I have had a reaction before but it happened when I was getting the treatment, not the day after. Just another way that Meganitis has a hold on my life.
Here’s the thing – for most people dealing with a reaction like I was having, they would of gone to the ER. But honestly, what the fuck am I going to do in the ER? Explain that I have been battling an undiagnosed illness that no one can help me with? They would not know what to do with me. It would just be a waste of time and money. In addition to the fact that I do not “look sick” .
Scar Tissue is defined as ” Fibrous tissue that forms when normal tissue is destroyed by disease, injury, or surgery”. My scars are all within. I wish people could see what its like living in this body that lets me know how much it hates me. I try so hard to not let this take over my life, so damn hard and I fail every time.
My nurse asked me what my pain was on that stupid pain scale 1-10. I said 5. He said ” Oh honey, I’m so sorry” ( all the while sounding like Agador Spartacus )
Truth is a 5 ain’t so bad.
Maybe some day this will all go away. Maybe someday I will find away to cope. Until then, I will try to keep the scars hidden .
It’s been a long ass time! How is everyone doing ? Nothing like a global pandemic to get your life turned up side down , am I right? How have you been holding up?
I know so many people have been affected by this pandemic in so many negative ways. All I can do is hope for a safe end soon and our lives to return to normal.
Let’s recap: when last we checked in with our heroine, I was on the eve of my first rituxan infusion. LET ME TELL YOU FOLKS – THIS SHIT IS THE REAL DEAL! I am still dealing with ” Meganitis” , what is ” Meganitis”, you ask? You can scroll back through all my posts to see my struggles, but this is the breakdown. Halloween 2014, discovered a lump . turned out to be inconclusive, then spring 2015 another lump – again inconclusive. They were enlarged lymph nodes. Blood work all over the place, rash , fevers, chills, which turned into fire skin. Had Scans, PET and CT, 11 doctors , and still no answers. Multiple medications that worked for like a week, just to not work. Diagnosed with Fibromyalgia and at one point Stills Disease ( now since ruled out )
Current status is a flare up / flare down type of situation . Flare time results in severe whole body pain, lymph nodes in pain, ( arm pits hurting is the weirdest thing ) It sucks. My rheumatologist and my immunologist are the drs I see the most. Working together. They came up with having the infusions. The infusions deplete B cells that cause inflammation which is why they are life right now. So you are supposed to get them about every 6 months. I am up to about 4 months. But man, once they kick in – sweet relief! I feel like I have my life back. It sucks cause this is a whole day process. The infusion lasts about 6 hours. But I will do it if it means I get months pain free. My hopes is that I will get to the point where I do not need them anymore. A gal can dream.
On my weight loss surgery front – I am still stuck at 80 lbs. It was hard to work out or get moving when you are in constant pain. Now I have been trying to get moving more. I have been taking walks every weekend , excursions, bird watching . I like it cause I can get a good walk in , a couple miles without even really realizing it. Plus getting out walking, its easy to social distance and nature is all around us! I need to get under 200 lbs. Its a goal and I need to hit it. Part of the reason I am getting the old blog back up and going. Its a mental thing , but great for accountability for myself. But I really feel these walks are helping me, take a look at my progression so far:
The picture on the left was taken at Easter 2018, picture on right, July this year. When I took the picture on the right , it was the first time I was like – ” whoa, this is me?!?!” I feel my walks are really helping me get moving .
So, in other news I have become a birder, wildlife photographer. At least attempting it, lol. Its funny cause when I was a kid I hated birdwatching with my parents. Now , my dad and I discuss birds and go places looking for rare birds. We found a Mississippi Kite in Durham NH, as you can guess by the name, the bird should not of been there, but it was. Kinda cool if you are into that type of thing.
Here are some recent pics I have taken on my excursions. Mass Audubon membership was the best thing to get!
So that’s whats new with me. What is new with you? How are you dealing with this world right now?
Hope you are all well and your families stay safe!
Sup yo. How is everyone doing tonight? I know it’s been a while since my last post. Sorry about that. Things have been kinda crazy as well as I have dealing with quite the Meganitis Flare. Yup, full on FML mode.
So , yeah the flare is super great. After 4 and a half years , I still have all the same symptoms ( except the rash, thank God ) and still no answers. I live in constant pain, some days are better than others. And I have come to accept that Winter and the cold make it worse. I feel better in the warmer months, I would love to realize that I am in no pain, honestly don’t see that happening , but a girl can dream.
As far as my weight loss surgery goes – its great, down 80 lbs! I need to work out . That has been difficult since the daily pain plagues me. But I keep trying to make better choices , definitely navigating better though.
Which all brings me to today … I am determined that this will be the year I put a name to what I refer to as Meganitis. My rhumetologist is great, but I feel like we keep going in circles. The plan has been to treat the symptoms rather than dig deep and get a diagnosis. And, I was okay with that . I just wanted to feel better. But now, I am at a point where this bitch needs a NAME! I feel like if I have a name for this – I can effectively treat it.
I am all out there. I wear my heart on my sleeve, I cannot keep shit in. I am very open about my condition and my struggles. The reason I am so open about it is, what if that one person I share my story with has the same issues or knows someone that does. I do not want to miss out on the opportunity to gain knowledge about this or to help someone with what I have done to cope. In being so open, people always have always told me that I have this or I have that , or I need to do this or I need to do that . As much as I appreciate everyone’s concerns and I know that everything comes from a place of love, none of them are doctors. But, what I do is take the information people send my way and I do my own research as well as discuss it with my doctors. Sometimes its a very easy answer why XYZ isn’t my thing and sometimes, its like okay , lets do some tests and blood work and see what comes up . Normally , I would say that doctors throwing shit at a wall to see what sticks would be insane. But I am lucky that my doctors are all in agreement that I am a unique case and listen to my concerns.
This all brings my to my latest appointment today . Blood work . My PCP is doing a whole complete work up and according to the records, giving me tests that I have not previously received. With so many doctors in different locations, something gets lost in communication. I get it. It happens. But that’s also the reason I have my binder of tests, procedures, and surgeries. Someone’s gotta right?
My mother has been on my mind lately , more than usual. It hit me like a ton of bricks today . You see, every appointment, every lab visit, every text or email from the doctor, I would call my Mom when I got out. Just to tell her what happened or what was happening or the plan for the next visit . Talking to her always made me feel better, most of the time I leave frustrated and she always knew what to say to ease my mind. I walked out today and grabbed my phone to call her. Like auto pilot. Cried all the way back to work.
Grief and loss , I have yet to find the way to deal with them in good way . Mostly I am just a crier. I miss her so damn much, my heart hurts. I know she is around, I do get her signs, but nothing will ever be the same.
I read this today on a Grief and Loss page and it really struck home.
Go ahead, have a good cry . I know, you feel it too. I miss her immensely, but it really is these little times that creep up and hit me hard.
I really am focused on getting answers this year . I just hope I am successful.
If you are one of the lucky ones like me that deal with pain on a daily basis – here is a soft high five for ya! My normal daily pain I would say is about a good 7 or 8 on that happy little pain scale at the doctors office. You know which one I mean,right?
They should have a chronic pain scale that goes higher. This past month – I am a solid 11. Spinal Tap Style…. ( you millennials prob don’t get the reference, google This Is Spinal Tap ) It royally sucks. I know I have bitched about this before, but it fucking sucks.
Not knowing what is causing my issues fucking blows. If I had a cause, I could treat the cause instead of treating the effect as we are now. Like, if you have cancer – you get chemo, diabetes – you take insulin , cough -cough drops. I am stuck with no cause.
I am at the mercy of my body giving me no symptoms or warning – the flares just hit and I am in the middle of a long one. I know it could be worse and I am grateful that its not but this shit is getting old. I have been doing my Actemra shots each week but currently I am waiting for my shipment to arrive. Specialty pharmacies are great, lemme tell ya. So I was getting my shots from CVS Specialty pharmacy, but I got a new health insurance and have to go through a different pharmacy. I was on the phone with them all week, they kept transferring me to a voicemail that specifically says ” leave your name and number….blah blah blah and we will call you back ….YES, WE WILL CALL YOU BACK ” Left messages all week and finally complained that no one called me back and I got to speak to someone. Problem is that I needed to take my shot on Thursday night. Its Sunday. And my shipment won’t be here til Tuesday. They did say I would not have to pay the co pay for my trouble,but honestly, I don’t care – I just need my meds. Ugh.
It sucks to rely on something to feel better , even when its not working good. But the potential is there and it gives me hope.
I have thought about going back to the drawing board and taking all of my tests and starting somewhere new, like a 3rd or 4th opinion. I don’t know if that would be worth it or not.
I am sorry this is a pity party, but I am frustrated as hell.
I haven’t been to the gym in a month and I am pissed. But I hurt. Its hard enough to be me day to day and get through what I need to .
In other positive news – I am still steadily losing weight. Currently down 72 pounds!!!! I am definitely navigating eating better. Thanksgiving was different this year, had to really pace myself and certainly did not eat nearly as much as usual.
So, I have been thinking. There has got to be some medical student , some doctor, some medical professional who is looking for a case. Who wants to be the person to give an actual name to Meganitis? I am serious. If you want to take a crack at it, hit me up!
I don’t think that its too much to ask to ween the daily pain down to a 4 or a 5 if I won’t ever be without it.
I just gotta have hope that eventually I will have an answer and feel better.
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,