Yes, I need to take a Nap

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 .

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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.

I have to learn to listen to my body .

Easier said than done.

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Finally , an answer!!!!

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”

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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.

Gotta just keep swimming and don’t stop believing

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Faking It on a Wednesday

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I feel like Kurt is a good way to express myself. I am a huge Nirvana fan .

I feel like every day I am faking it.

Faking that I feel good.

Faking that I can handle this.

Faking that I am not brokenhearted.

I am trying to suck it up and deal with my daily pains.  I have moments where all i want to do is go to bed. I have moments where I feel fine. I have moments where I want to remove my legs and hang them on the wall. There is nothing I can do. Changing meds hasn’t helped . There is no cure for the fibro and if it is RA ( or a variant of it ) , there is no cure for that either.  Its just one of those things that people deal with I guess.

To be in pain on the outside hurts and sometimes it feels better. But to be hurting on the inside is a whole other ball game. I would take 1000 times the pain on the outside to alleviate this pain in my heart.

I have hurt before, for years I have been in a depression I guess in the clinical sense of the word. I Could not see the light. I feel like the light right now is hiding behind the shadows.  I know this is not how my mother would want me to feel .  I know she would say something crazy or something comforting or both. She had that way about her.

The reality is I miss my mother something fierce.  I miss hearing her voice , I miss her hugs, I miss just knowing she is here.  My mom was my person. My person I call when I am happy, when I am sad, when I have good news, when I have bad news , Mum was my person who could talk me off the ledge and make me feel better.

So, each year for the past 4-5 years I have been taking my son to the comicon in Rhode Island. Today they announced that Cary Elwes would be attending.  My most favorite movie of all time is The Princess Bride.  So, of course, who do I call to fangirl too?  I can hear her going ” oh how cool is that ?!” Not that my dad didn’t have pretty much the same reaction, but its not the same.

I am trying to figure out my way in this world and how to best honor my mother. I’m at a loss.

I need to get myself together, and get back on track. Just trying to figure myself out.

Gotta keep swimming

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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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