You read that right, I am a 37 year old mom of 3 who needs to take naps. So damn what?! As I am sure that anyone with chronic pain issues will understand the utter exhaustion that grips a hold of you every day . While I am not experiencing the pain I have been as of late, the exhaustion never goes away.
I was recently outfitted with a CPAP machine. I have “Severe Obstrusive Sleep Apnea”. I went into it imagining myself like Darth Vader with my mask .
Instead, I am more like Dark Helmet. If you have seen Spaceballs, you know what I am talking about, and you have a wonderful sense of humor! Anyways, my point being, my hope was that when I got the mask I would have all this energy and be full of life since I was sleeping better. And yeah, no, not quite. Don’t get me wrong, it is definitely helping me. My first follow up with the sleep doctor showed that I went from 66 times an hour not breathing to 1.2! Pretty impressive… but still the exhaustion remains.
Just another symptom of Meganitis.
So yes, when I need to take a nap , I NEED to take a nap.
It is my hope that my exhaustion will get better. But for now, I am a sleepy head.
This week has been particularly awful as far as my Meganitis goes. This is the most pain I have been since this whole thing began. On the positive side though – I started the actemra this week after several rejections for this and other medications that might help. Just in time too – my inflammation is way up, blood work was high. Down side is that it could take 3 weeks for this to kick in.
So, my life right now is just ugh. I have been trying to be positive about everything but the struggle is real. It is very hard to maintain any sort of joy when you are in constant pain.
To be honest, I started this post last week, its been sitting here brewing, all my thoughts jumbling around my brain. I want to say so much but its just hard to get out.
So yes, last week was one of the worse on record for me. In addition to the excruciating pain, my inflammation was “way up ” per my doctor. I started my new medication, I am doing Actemra shots every week. I have been rejected for other medications by my insurance company and last week came THE talk with my doctor . You know the one, the one where the doctor says ” Can I be honest with you?” you say ” yes of course” and he says ” I don’t know what is wrong with you and we are trying everything I know . Nothing is getting better and you are getting worse. If this doesn’t work, we may have talk about if I am the right doctor for you or a visit to the pain clinic”
To sum up :
No Stills disease which he previously said I had
Getting worse, not better
Inflammation way up
Actemra is my hail mary pass – if it doesn’t work not sure where we will go, co pay is $40 for a month supply, pricey , but if that is what it costs to feel good – so be it
My “foggy brain” seems to be fixed by switching my Gabapentin to a different med at night ( I guess 1500 mg is a high dose?) That I have definitely noticed a difference. I was not as forgetful and felt like I had a clearer head.
I capped off the week taking time off from work to rest. I have to say, doing nothing for days was exactly what I needed to recharge. I did my second Actemra shot last night and returned to work today .
It is so hard not to allow this demon sickness to take over my life. It has so much become who I am and I fucking hate it. And as much as I hate it, I don’t know how to change it. My day to day depends on something I cannot even put a name to. I have no fix , I have no cure, I have no name . I am a guinea pig after 9 different doctors. What is the most shocking is that these are the best doctors in the world and they still do not know the cause of this. Its getting old hearing ” maybe they will name a disease after you …” Like fucking really ?
I have to think about every step I take, and if the pain is bad enough, I have to think about how I will sit, how I will walk or hobble.
It sucks being in constant pain. It sucks being constantly exhausted. It sucks having skin that feels like it is on fire. It sucks having your armpits swell and hurt. It sucks when your neck hurts. It sucks getting random lumpy lumps ( thank God, I have not had in quite some time ) It sucks looking at yourself in the mirror and seeing a completely expanded distorted unrecognizable version of yourself. It sucks not being able to move and exercise to make yourself the person you knew.
Pain is ugly .
Pain is strong. Much stronger than I thought.
And I am weak.
I keep trying to find the way. Any way that I can resume my life and get out of this mud filled funk. I hate feeling the way I do . And I know , you are probably saying , suck it up , or change your life then, but if you have ever been in never ending pain, you know it is easier said than done.
Like seriously , when will it end?
Soooo, bringing us to today :
I actually feel more better today than I have felt in a very long time. I want more than anything to declare my love for this medication , thinking that it is responsible for this feeling, but the pessimist in me tells me to hold off on that parade just yet.
I felt better today and that is a small victory that I will take and hold on to. I have gotten much better with the acceptance of the little victories instead of getting pissed I am not well. I can only hope that I will continue to go up from here and not slip back down into this pit from Hell that my life has succumbed to.
I like to think that I am a strong person, but to be honest, I just want to curl in a ball on my bed and wait for this to pass over. Wishful thinking …. that it will actually pass. I have definitely become more of a headcase through this, which sucks. I am looking into therapists to see if that will help me at all.
I don’t feel normal. Like what do you say when someone says ” How are you ?” do I lie and say ” Great ! Never better !” or do I tell the truth and say ” I’m in a shit ton of pain with no end in sight, how you doin’?” Then I have to explain everything, which for folks to understand what I have going on, I have to do it.
Maybe I will print out cards to carry around with me….. ” Meganitis , the bad and the ugly, there is no good…”
I think of my mother everyday and I how I want to make her proud. She dealt with so much medical crap, I don’t know how she did it. I wish I had one ounce of her strength . She dealt with so many things medically and she never let it affect her spirit. Mean while my spirit seems to be sucking me away like the bad spirits in he movie Ghost
Mum didn’t stop believing and I have to believe there will be better days to come.
Until then, I will Just Keep Swimming… cause ….
Don’t Stop Believing and Just Keep Swimming , feels good to say them together .
Good words to live by, guess I need to take my own advice…..
That is right folks – I have an official diagnosis!!! No more Meganitis, I have been diagnosed with Stills Disease. Now, all of you are probably saying to yourself, what the heck is Stills disease?
“Adult Still’s disease is a rare type of arthritis that features a sore throat, a salmon-colored rash and a high fever that spikes once or twice a day. Joint pain tends to develop a few weeks after these initial signs and symptoms”
This is a disease that is ruled in once everything else is ruled out. I am also happy to report the Humira that I have been been on for a little over a month is working wonders! It has been such a long road, but it looks like I am finally in a place with a treatment plan.
I was so excited, I had to go tell my mother. Yes, I drove from Boston to her grave to tell her. I mean, I know she knew already , I feel her around me all the time, but I had to go tell her myself. It was my routine , go to Boston , then leave , call my momma. Tell her the good, the bad, the frustrating,the infuriating, just the way I was feeling and what the next step was or what the plan was. It is hard to leave these appointments now and need to call her and know that she will never be on the other end again.
In fact, it blows. Hard.
The reason I chose Brigham and Womens Hospital for my care is because of my mother. For 30 years my mothers surergies, transplants , ( yes transplants, plural) and several of her doctors were all at Brighams. I was very familair with the hospital due to all the visits over the years, and the fact that it is a world renound hospital didn’t hurt either. It was something I trusted due to the fact that my mother was so sick for so long and I feel , besides her larger than life spirit, that this hospital had a part in that .
When I moved a coupl of years ago, we are only about 20 minutes from the hospital, barring traffic. I would go see her during her various stays at the luxurious ” Brigham suites ” as we would call it. It sucked that she was in the hospital butit was closer to me than her home was so, I took it.
Now that I am starting to feel better and have an answer, I owe it to her to Be Better. I need to get back into my routine, which seems like I am forever saying . But I really need to. Need to get some consistncy. I am also anxiously awaitng my sleep study results.
So, onwards and upwards.
I am getting in a much better frame of mind. Trying to figure out who I am , what I want in my life, who I want to be – for me and for my family. I want to actually achieve some goals in the next year.
I have been working on this one for over a week, forgive me for the past tenses.
After my mother passed away, my sisters and I decided to enroll all our girls in dance class. The same dance studio that my mother went to , the same dance studio that we went to. For years on Wednesday afternoons, we would make the half hour drive to Amesbury for our tap, ballet and jazz lessons. As I sat there waiting during my daughters class, so many memories flooded back. It didn’t help that literally amongst the picture collages on the wall were some pictures of my mom. Looking at her pictures, she was so full of life! She was so happy. She loved dancing, she loved dancing school, she loved the family that owned the studio. Its funny, so many people at her services commented on what a great dancer she was and how much she loved to dance, but honestly, I can’t remember when she was well enough in recent years to actually dance. I bet it had been 10 years or more.
It was so bittersweet, heartbreaking actually.
It seems like this week everything has been crappy. I am still dealing with armpit issue. They hurt so darn bad. Still. I went to the doctors on Monday. More blood work. If my levels were high, then Pet scan would be ordered. My levels are elevated by not high enough I guess. My doctor is also trying to get me on a different medication that may help me better.
In the meantime, I am still in pain and I am still sore.
I am struggling with my disease, that’s what the doctor is calling it. Though the whole thing isn’t fully named, I am really having a hard time. I don’t know even how to explain it. Just being is difficult. It is hard getting out of bed, getting dressed, all my daily activities. I have faith that I will get an answer eventually and that I will have a regimen that works for me. In the meantime though, Things suck.
I want to feel better, more than anything. I am terrified that I am cursed with my moms poor health and that I am doomed to follow her path. And I know, I know, situations are entirely different , and yes, I am most likely being dramatic, but I don’t want that. I don’t want to deal with this crap the rest of my life. I want to live the best life possible. I just don’t know how to do this.
I am wrestling with my emotions and reality. What am I supposed to be or do ?
I need to lose this weight. I need to be better and I need to move. But I can’t while I feel this awful on a regular basis . I need just need to have faith that answers and treatment plan will come soon . Its hard .
My mother always saw the light through the dark. The positive through the negative. The love above loss. I wish so much I could be like that , and I swear I am trying . I just at a loss on how to execute it.
Hopefully one day I will rise above and be able to live this life the best way I can .
Hi everyone. How’s the weekend treating you ? I had a very busy Saturday . Which I am already paying for . My body is screaming today . And I slept pretty darn awful . But let’s focus on the positives of yesterday .
I made what is becoming my weekly pilgrimage to see Mum . This week my daughter picked out a red heart balloon that says ” I Love You” and we picked out a bouquet of various colored roses . It’s hard for me to go to the cemetery. I guess it’s the part where I leave her there . All alone . I feel like putting in a couch there for us to go sit and talk to her , lol. I think though I want to get her some of those solar lights so it’s not so dark for her .
I’m trying to deal with my mothers death in a healthy way , but really , how fucked up is that ? A healthy way ? What does that even mean ? How is any of this healthy or right ? Healthy should of been what she was . And right is definitely , what this is not .
I also trying to get my emotions under control because the more upset I am, the more prone to flares I am. I seem to be in a flare state since my mother died and I am in a lot of pain , physically and emotionally. I am hopeful my recent change in meds will help with this, but so far no .
So ,back to my day . We go see Mum , then head for a quick visit with my dad . Then we head to get our hair done . My desperate need for cut and color and my daughters back to school cut . We get there early so we walk around hunting Pokémon . Lots of walking around . We get our hair done , head to pick up my oldest from work and head home . The hubs and I went out for the night to celebrate our 18 year anniversary.
We get home late and I am so exhausted. I’m trying to get to sleep when my daughter comes in upset about Nana. She is crying and inconsolable. She’s clutching her bunny Pinky which her and Nana made together at Build a Bear . Seeing her like this just breaks me . I’m trying to comfort her and myself at the same time . So I tell her about the Signs . Signs that Nana will show her that she is there and with her . I tell her a story about how a cardinal came in the yard the other night while I was talking with my dad . How I know it was Nana . I tell her how even though she can’t hear her say “Hi Maddie , I am here ” she will let her know that she is there with her . I give her a blanket of my mothers for her to sleep with and I head to her room to tuck her in . When I get to her room she holds up 2 Beanie Babies .
Wouldn’t you know ? ONE WAS A CARDINAL ! I burst into tears again . I told her that Nana was letting you know she was here already! I don’t know who it comforted more , me or her .
Even in death, Mum is still looking out for us and giving us what we need . Absolutely incredible.
One of my most favorite movies is The Crow. We even named our dog , Draven , when I was a teenager after the main character, Eric Draven. Mum loved that dog . This is one of my favorite quotes from that film :
” If the people we love are stolen from us, the way to have them live on is to never stop loving them. Buildings burn, people die, but real love is forever.”
Real love . Real love extends beyond a significant other . Real love extends beyond our children , our parents . Real love is love we have for those in our life we would do anything for . Regardless of blood .
Signs are real . Weather or not it originates in your head , if it comforts you , it’s real . For now it’s what I will believe in .
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 !
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.