I’m...so...FRUSTRATED!

In home therapy ended last week, it’ll be about a week before outpatient therapy can start so I went to the gym! I can be found on my bed for the next eleventy hundred hours.

I truly didn’t do anything that would be considered overdoing it. I only did 5 minutes on the bike, then went through the home routine she left me, plus a few arm workouts with lowest weight dumbbell.

Driving back home was incredibly difficult and it’s less than a mile drive. This was my concern being discharged from in home therapy. When doing inpatient and in home therapies, if we pushed it was ok, I could get right into bed. (as opposed to in/out/in/out of the car, driving, walking from car, etc.

I’ve been in bed since getting home 2 hours ago. Pain med taken, maybe took the edge off but barely. I’m frustrated that such a small workout took me down like this. I’m frustrated with how very many times I’ve had to “start over”. I’m just frustrated! Yes I know  it’ll get better, I know I’ll continue to build strength and endurance but right now, in this moment, I’m angry and yes, frustrated.

This is my reality, and the reality for my family who sees this up close and personal day after day. All my smiles and insistence that “I’m fine” fall on deaf ears as far as they’re concerned because they SEE the things I think I’m hiding.

I won’t give up, no worries. Sometimes I just want to SCREAM in rage at this stupid disease and the never ending cycle of flare, recover, repeat. I want things to change but all the wanting and working hard just doesn’t matter when dealing with a chronic illness like Myositis. I know that continuing to want more for myself will at least always help mentally I’m just tired today of the physical failings of my body.

That D*mn Pay Stub

In one of my kitchen drawers sits the voided pay stub that was my very first paycheck when I went back to work after 20+ years of being a stay at home mom. I used to have it in my wallet so I would see it often; it was a huge source of pride and represented an incredible new path I was forging for myself and my kids. Just before diagnosis I had taken the kids and me on a vacation and I was starting to shop for a new vehicle. That pay stub represented independence and new found confidence. It represented the realization that others believed in me, too (my brother for one, who took a leap of faith in asking me to work for him).

The paycheck now sits in one of my kitchen drawers. I took it out of my wallet a couple years ago and almost threw it away but couldn’t, so I put it in the very back of my silverware drawer, thinking that would lessen the sting of seeing it and being reminded of all I’ve lost, but each time I find myself looking for the actual “lost” kitchen serving spoon/ice cream scoop/other random kitchen gadgets my hand finds a piece of paper that reminds me again of the thief named Dermatomyositis and Antisynthetase Syndrome that came into my life in 2016.

I could just throw it away. I could put it into a bin or the back of a bottom drawer full of items I know I don’t need and don’t use. I could burn it! I could shred it. I could tear it up into lots of little pieces--okay, no my hands wouldn’t cooperate enough with me to do that one but still it’s an idea of what I *could* do with that damn paystub.

The truth is, I don’t want to get rid of it. This isn’t me clinging to negativity though I could understand some seeing it that way, and at times yes, the reminder of what was lost is definitely negative and there is no way around that, there’s no spinning it. I’ve worked so hard over the past 3 years since diagnosis to always find the positive somehow/someway, and I’ll keep doing that! At the same time I’m slowly, albeit very very slowly, learning that it is okay to accept the negative realities of having a serious, debilitating, chronic illness. It is my reality now and entwined into every fiber (quite literally! lol see I still have my sense of humor) of my being. I’m working on seeing that piece of paper now not only as what I’ve lost but also as a reminder that I can still have those feelings of confidence and strength, I just have to find new ways to reinforce that about myself in spite of my disabilities.

To Accept or Not to Accept...

I was going to start this by saying “Last night I had a burst of energy as I was doing my basic night kitchen work, ie loading the dishwasher and washing the non-dishwasher dishes and shining the sink,” but as is seemingly always the case when I try to describe attributes/sensations of these diseases of mine, energy isn’t the quite right word. So:

Take Two!

Last night as I finished doing the dishwasher, I set my hand on the counter to steady myself from yet another imbalance of the jelly legs and, when it felt like I lost a layer of skin peeling my hand from the invisible sticky mess that was there left by “”I didn’t do it” or “it wasn’t me,” I had the desire to really clean the counters and stove top. Every now and then I can convert the desire into accomplishing something more physical. Whether it was some slight improvement or the Starbucks 2x caffeine coffee I had earlier or a combination I got it done and it felt good.

I went to put clean towels into the NO MOM LAND, aka the boys’ bathroom (go ahead laugh, true but funny but I have to say lately they really are doing better in there, good boys haha) and saw that apparently a car mechanic had washed hands or something in the sink. And counter. And backsplash. And all the way to the top of the toilet tank. . Oh—and no car mechanic was in the house so I don’t know what it was and don’t want to...but I digress. With the mind over matter action still happening I cleaned up in there as well.

That’s it. That’s all the real extra I did! Wait not true, I did go to the store to pick up a prescription and a couple items and didn’t use a Beep-Beep (my fancy word for the motorized scooters), I walked because I felt ok enough to just walk!

Those were my extras for yesterday. I woke up around 4am to spasms in my left hip flexor shooting through the leg, making my leg stiff and in agony; I didn’t want to take anything and didn’t want to really move so I turned up the temp on my heated blanket, did some deep breathing and fell back asleep.

My alarm went off at 5:45, left hip and leg still hurting but what-are-ya-gonna-do, time to get up. I opened my eyes, turned my head and was met with that achy head pain that has become an immediate red flag that a flare may be coming. I went to turn off my alarm and my arm felt like the mysterious mechanic who infiltrated the bathroom must have tied bricks to it, and the other arm. Red flag alert two. I got out of bed, started to walk and upon finding that jelly legs had also been weighted down, I angrily recognized red flag alert three.

I couldn’t find the humor after that. I’m just going to say it, and I don’t like to say it “out loud” but I’m going to anyway:

IT’S NOT FAIR!

I quietly mumbled an angry storm of cursing while still in my room, took some breaths and hobbled my way to the kitchen and coffee, thankful I cleaned the sticky mess on the counter last as my legs started to give out I almost the same spot as last night, but worse and I threw my both hands onto said counter and stove top to keep from falling.

I’m not sad, I’m just so angry! I like angry better than sad so there’s a positive I suppose. I feel that anger is more of a concrete emotion that I can “put a finger on,” feel it, find a healthy way to express it and get it out!

I don’t think I’m headed into a full on flare, no nausea and the head pain has subsided a bit. I’ll take it easy today, I’ll take the advice I’d compassionately give anyone else to rest and recoup but I won’t take it eagerly.

I don’t know how to accept the terms and conditions of the diseases I have; I don't want to accept them! I do realize however that I have to at least acknowledge the limits and allow for recovery, like it or not, and for this morning writing about it was what I felt needed to be done. And yeah yeah, I’ll mostly be sitting yarn-arting or sleeping today, self care and all that rubbish, no worries, no lectures needed, I promise.

I Hate Roller Coasters

When your mommy brings you Reese's Stuffed with Pieces, the day gets a little brighter. At the same time, I hate that my parents have to come visit/help me. Okay, I don’t hate them coming here, I hate the idea and the why of it. They shouldn’t have to be worrying about me at this point in their lives, at least not in this way!

This stupid health roller coaster I and so many of us are on is just the stupidest of stupid rides, one that I not only can't get off but am stuck in that damn front seat! It keeps revealing new twists and loops hidden on initial observation of the roller coaster, and each new path on the track brings increased and almost suffocating speeds; finally, finally the ride starts slowing down, even coming to a stop--only to launch backwards. Those closest to us are forced on, locked in and zoomed onto the rickety tracks. Some stay, white knuckled and terrified into silence. Some scream in terror with eyes squeezed closed so as not to see what’s coming next or how anyone else is being affected. Some sit next to me holding my hand, while others sit next to me laughing hysterically to the point of near peeing pants at and with me in the face of the fact that at any moment the entire ride might crash down! Others use the eject button;  it’s an escape equipped with a silencer so you never hear them leave.

Yes I got all this from a pack of Reese’s with Pieces lol.

The Worst of Both Worlds--Myositis

Dermatomyositis (DM) is classified both as a neuromuscular disease and an autoimmune disease. It is thought that the inflammation resulting in cell damage is created when the immune system attacks healthy muscle tissue and blood vessels under the skin. -- From Myositis Support and Understanding

Basically, DM is so rare researchers are still learning about this disease (as well as all the myositis'), and they go back and forth as to whether it is an autoimmune and/or neuromuscular disease (hence my "worst of both worlds), which is why myositis is considered to also be under the Muscular Dystrophy "umbrella". The only way to keep research continuing is to help raise awareness, and it is as easy as sharing as much as you can about these diseases! Raising awareness is saving lives. It was not too long ago (literally within the last 10 years) that the prognosis for DM was about 5 years. Now people are living many, many years thanks to the increase in awareness which has resulted in an increase in research. Please help keep that going!

A Light in the Dark: My Realities with Dermatomyositis

This year has been quite the journey; yes obviously a journey of the physical body but also an incredible journey of the emotional and mental facets of the mind and body.

I still see over and over when my Rheumatologist Dr. Josh pulled his chair close to where I was sitting, after confirming my diagnosis and knowing that I knew the seriousness of this disease, he looked me in the eyes and said:

"It is treatable. It is absolutely treatable."

Those words were both reassuring and worrisome. Reassuring because he said it so confidently and calmly; worrisome because he felt that he needed to assure me this disease is treatable. I replay that moment so many times in my head, I don't know why really, I just know it's stuck on repeat. I guess maybe it's the fear that still sits inside my heart. No matter how confident I get to feeling about how I'm doing, the fear of relapse is always there.

People die from these diseases (the nasty little myositis family) mainly because each myositis is so rare too many doctors know nothing about them and by the time many patients are finally diagnosed correctly, too much damage has been done. That is why I am desperately asking you to at least read what I post so that you can learn and at least have a bit of familiarity with myositis. You just never know who you might be speaking to that has never heard of it, it might be that someone they know has had these crazy symptoms and is sitting in the hospital getting weaker and weaker, with high muscle enzymes or mysterious rash or shortness of breath--no one can figure it out, then suddenly you remember something you read or saw posted and mention it to them, it could be the info that saves their life or at least maybe gets someone looking for the zebra rather than the horse:

"Doctors are now being trained when you hear hoof beats, look for zebras (rarities), instead of horses (common ailments); when in the past, they only looked for the most common ailments"

From Myositis Support and Understanding

I've been feeling stronger than I've felt in well over a year, and it scares me. I don't like to admit it. I like to remain positive and upbeat; but I don't feel that I'm being fair to awareness. How can I raise awareness if I'm not honest and real about all that comes with dermatomyositis? I am scared every single day, there I said it. After a year of misdiagnosed pneumonia, not being able to get out of bed, not being able to cut my own food, getting meningitis twice, spending 3 weeks total in the hospital, I guess being scared is an understandable side effect.

Even on the best days, there is the fear of what the next day might bring. Will all my progress be gone? Will something new decide to join this insane party? I don't dwell on those things and I've gotten better at pushing them back down quickly. Hey at Physical Therapy yesterday I didn't cry--I didn't even tear up--when I had a couple set backs because my knees continue to worsen even as other areas of my body are improving. I announced to my Physical Therapist "I'm growing up, I didn't cry!"  I've learned to embrace what IS good and what is GOING WELL. Still, there are things that get to me. Last week I was walking outside and saw a woman kneeling in her garden, working and digging and weeding and planting. She jumped up, stepped back to look, jumped back down to dig and adjust, jumped back up to admire...you get the picture. I cried when I got home. THAT USED TO BE ME. I can't say that will be me again, I have to keep myself real and accept that I may never quite have that exact movement ability again. BUT I've learned that adaptations are not just useful, they are welcome and OK! I'm learning that accepting my limitations is allowing me to push forward with what I can do. Do I need a wheelchair or a "beep beep" (the crazy electric scooters at the stores) sometimes? Yes I do. And that is okay.

My PT Alycia and my OT Chris are amazing, as are the aides at my particular rehab place. I believe that both OT and PT have me at the very least learning how to use what I do have to make the most of every day. Through PT/OT I have learned to accept that sometimes just showing up is a huge accomplishment. It isn't about how much I do or how fast I do it, it's about showing up and coming back and trying again and again. Alycia has to remind me now and then that it's the disease not me that might have me going a bit slower. She'd probably say she has to remind me of that more than now and then, but she probably won't see this blog entry so I'll stick with now and then lol!

Please please please share this or as I said, any of the myositis graphics/info I've posted. Yes for me but also for who knows who might be helped. Remember, only 5 in 1 million are affected by dermatomyositis. That is only .05% of the population!! Share to make aware.

Spread the Love!

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A New Treatment

Almost exactly 3 1/2 years ago I first starting noticing the itchy little blister/rashes that would come and go, my first ANA test (and second and third) was positive, I had butterfly type face redness, and lupus was suspected. I look back and think how my rheumatologist at the time--who is once again my rheumatologist--was simply being proactive in prescribing plaquenil. I didn't take it because I didn't understand "why" if I didn't have an actual dx and I was scared to start something I thought maybe I didn't need. Maybe it would have helped me, or maybe it would have affected me badly. Now I don't question him, or at least try not to lol. I trust him so much and am so thankful he is my doctor! 

I've not responded as well nor as quickly as Dr. S would have liked to see after rituxan (though I absolutely have had improvements as to my lungs!!), and the swallowing issue hasn't resolved; in fact it continues to progress. The progression is very slow, thankfully, but progressing and, I won't lie, it is a bit disturbing when water just won't go down. Other symptoms have returned as well, and while I have started having a good day or two (also I'm sure thanks to rituxan), Dr. S and I agree that I need a little more help, a "boost" of sorts.

Next week I begin another treatment called IVIG:

IVIG is a blood product derived from large pools of donated human plasma. IVIG boosts the body's immune system response, and doctors don't know the exact reasons IVIG works in some myositis patients. IVIG is usually reserved for cases resistant to other treatments, and people with inclusion-body myositis typically do not benefit from IVIG unless they have accompanying swallowing problems.--from The Myositis Association

I'm nervous but sure it will work out fine. It might be a rough week or so as it is 3 days in a row of treatments ( come see me!) and I've heard/read IVIG tends to have more side effects than rituxan. It tends to do very well for people and I do believe it will help, particularly in conjunction with rituxan, but I'm certainly concerned about side effects for myself, but especially for my kids, I feel so bad when I'm "down". What a journey this is turning out to be.

A Birthday and My Reality

First the good! Yesterday was youngest son's (ASD) birthday and party. For the first time in many, many, many, many years, he had friends come celebrate his birthday, friends that he chose; he was so completely happy I have no words to describe my own happiness. The several random and spontaneous hugs I received from him through the night said everything that couldn't be expressed verbally. Even with joy being such a wonderful emotion to feel, it is a strong one and overwhelmed him a bit but only in a way that he knew when he was done and ready to go home both from exhaustion and, I believe, building stress levels from the intensity of the happiness. Only slight worries arose once home, some worry about sleep and only one wake up and walking, otherwise all calm and wonderful. 

Today I actually started thinking that a return to work was maybe around the proverbial corner. Not that I wasn't feeling my disease today, but I wasn't feeling it so intensely. That was also earlier in the morning before I had done too much; I was determined to push today, start trying to get caught up on laundry and vacuuming and since I wasn't feeling too much pain well into the 11am hour I felt like not only could that happen but maybe just maybe a partial return to work was in the near future.

I got laundry folded and sorted, dishes caught up and put away, dog walked and fed, bed made, bug killer sprayed all around outside, windows opened, stop leak stuff put into daughter's car, and the stove top wiped. By 3 the pain started kicking in and my knee stiffness really flared up, but then precious doggy decided to throw up because Mommy didn't add cut up chicken into her dog food so she didn't eat it so she had medicine on an empty stomach; it wasn't really a huge clean up but it did involve being on my knees and scrubbing, and that did me in. My arm strength is gone, and the walking-through-mid-thigh-deep-water heaviness arrived. Reality once again crashed over me like Hurricane Matthew waves crashed over piers this past week. 

I realize I have to get to, no, I NEED to find a level of acceptance with this disease. I just don't know how to get there or find it. I used to think acceptance of dermatomyositis as my life meant resigning myself to it, sinking into it, and I was not going let it get me like that. I'm beginning to realize that some level of acceptance has to happen to maintain my own mental health. I keep getting my hopes up unrealistically and then feel so incredibly disappointed as soon as the symptoms slam me back down.

Tomorrow is a new day, and a follow up with my rheumatologist now that the first rounds of infusions are done. It will be good to get his input as to what I can or might expect as to the swallowing issues I'm having, along with other symptoms that continue to appear. I'm mentally ready to start physical therapy I just need to know when I'll be physically ready! I'd love to start pool therapy but unfortunately my insurance doesn't cover any type of gym therapies. We'll see what he says!

Ups and Downs and All Arounds

Yesterday was a not so bad day, like really not bad day, like verging on a good day! I was able to get more walking in, increasing from right after the surgery barely making it once around the building to yesterday getting up to 1.5 miles! Not all at once, it was broken up in little walks and steps around the house as well, and very slow, but still it all has felt good.

I've begun to realize that a pretty decent day is followed usually by a few steps back, and that's okay. I know that sounds negative but for me it is the beginning of acceptance of this disease. I don't mean I'm not fighting and won't keep fighting, heck no! I fully believe, however, that in order to fight I do have to learn to accept what this disease is and what this disease (diseases?) is doing to my body.

When I woke up this morning and got out of bed I felt incredible, I had that "normal" feeling, I walked NORMAL. I said to myself, maybe this is "spontaneous curedom!" In my behind the scenes reality mind I was saying "uh oh...prepare yourself...cherish these moments...." About a half hour later I started to prep my avocado and yea, there was that extra pain in the left hand and the burning that comes along with the tingling, on bad days, in my right hand and wrist. Then the knees started to stiffen. I've done a LOT around the house today, pushed myself; not to be dramatic but because if a downslide is coming as it feels like it is, I want to cram in as much as I can! (also my worrying loving 17yo daughter is out for the day, when I try to get actual cleaning done when she's home she fusses at her mama lol ) I'm hurting pretty good now, my body has finally said "yea NOPE, you're done," and I'm listening. As of right now I'm not upset. Maybe I'm a little frustrated but not terribly frustrated like I do get sometimes. I'm evolving, can you believe it?? 

PS 18 days until treatment begins!

One Week Post Biopsy

It's been one week since my biopsy was done. Everything went very smoothly for the biopsy; the nurses, techs, and doctors were all terrific and kind which allowed me to feel less stressed which then I'm sure made for a better surgery. I woke up still in the operating room and truly had no idea anything had happened and gave the anesthesiologist a little chuckle when I asked if they did anything yet!

I was taken to recovery stage 1 to fully awaken. The nurses mentioned they would be giving me juice and crackers to eat before giving me pain meds which was a problem as I have celiac disease lol. They asked what I can eat and the things I thought of at first (fruit, veggies...trying to sound like a healthy celiac/vegetarian haha) they didn't have access to in the surgical unit, so then I said, "well, a lot of potato chips are gluten free, would that work?" They laughed but thought that was a good idea to substitute and went on a quick hunt to find them but couldn't; they called my poor daughter in the waiting area, who later told me she nearly fainted when, rather than having a nurse come get her to bring her to see me as the said would happen, she got phone call about her mother and was terrified it was bad news; only to hear the nurse on the other end say, "soooo, your mom wants potato chips....." Hilarious to say the least, especially because she didn't tell her the gluten complication reason and it sounded pretty typical of her mother (who is her father's daughter lol). She snuck in through some open doors before my nurse had a chance to go out and find her! 

My pain stayed manageable I'm sure because I stayed a good patient and stuck to my pain medication schedule. Okay, I tried to be a good little patient for my M and only got up when I needed to go to the bathroom. Is it my fault there were things to do/pick up along the way or that the kitchen was on the way to/from our bathroom? Nope. I found it a bit annoying that by day 3 when she would ask "why are you up" and I'd reply, "going to the bathroom" she didn't believe me and would follow me! How rude!! 

Early Thursday (post-op day 3) I noticed my knuckles turning red and beginning to itch, along with redness around my elbows and itching and pain. The pain and swelling of joints, especially my knees, progressed through the day and I was terribly stiff and found it hard to walk by late in the day. Recognizing this as a flare (a flare, at least in autoimmune diseases, is when the immune system is triggered whether by illness, surgery, procedures, stress, etc; the typical immune system goes to fight off whatever invader has come into the body, in the body of someone with autoimmune disease, the immune system goes haywire and fights off things mistaken for invaders, in the case of my disease my immune system starts to attack my joints and muscles) of my disease, I called and left voicemail for my rhuematologist. I got a call back on Friday for a big bump in prednisone with a 12 day taper; I'd bump up to 50 for 2 days, then taper back by 5mg every 2 days until back to 20mg, my current maintenance dosage. I'm now on Day 4 of my taper and am seeing improvements: my hand and wrist swelling has gone down and I can actually touch my fingertips to my palms again! Not quite a fist yet but getting there :) The biggest improvement has been the mobility I've gotten back with my knees, it's pretty amazing, I actually kneeled onto my right knee yesterday morning without thinking about it and had no pain. Getting up was incredibly tricky as I've lost a lot of muscle strength in my thighs thanks to Dermatomyositis, but still! I'm trying to stay in the moments of improvements and not get stuck in questioning if this is all temporary until I'm back down to the 20mg dosage. One new rapidly increasing dermatomyositis (DM) symptom has been the "mechanics hands" phenomenon. The skin on the sides and tips of all my fingers is incredibly dry, with it being especially dry and hardened and tightened on the sides of my index finger. I have small cuts on the sides of each of my thumb nails, and a lot of dryness around all sides of fingernails with redness just below the nail beds. One fingernail seems to be separating from the nail bed as well, gross I know; I smother my  hands with coconut oil now at least 3 times a day which seems to at least control the dryness a bit. I'm hoping the prednisone taper slows this process down as well so I don't lose any fingernails :(

Back to the biopsy. I was incredibly disappointed to find out that it will take 3-4 weeks to get the results back! That is entirely too much time to spend pondering, wondering, guessing what the results will be. Too much time to think, "what if it isn't DM, what if it is something completely different", and a billion other thoughts that I'm working very hard to quiet. I was never given a straight answer, prior to surgery, as to when I'd get the results. I had assumed about a week and no one said anything directly to contradict that assumption so I never pushed for details...live and learn, yes? It's okay though because the battle for treatment approval has begun with my insurance company. Not unexpectedly, they denied the request from my rheumatologist for approval to treat with rituxin (a chemotherapy drug used as an immunosuppressant) in 2, 6 hour infusion treatments. Rituxin is still considered a higher tier drug that should only be used after showing failure with several (several!!) other drug protocols first. Most, if not all, of the recommended first tier drug therapies for myositis are contraindicated for people also with Interstitial Lung Disease (lung involvement, which I have) which is why he went right for rituxin. I received paperwork in the mail yesterday from my wonderful rheumy's office with paperwork to apply for the drug company's foundation to hopefully qualify for free treatment medication. Pray, cross your fingers, send good vibes that I qualify! Having to reduce my work hours since June as the disease has progressed, and having stopped work the week before as I couldn't hold even the smaller shoe boxes without my wrists giving out, has made for some interesting financial times; but one good thing about challenging finances is it may very well help me get approved for the free medication. What an interesting little vicious circle it has become lol.

Onward, forward, upward. Today my goal is to walk outside around my building, twice. I've already accomplished one time around this morning and will take my next spin later in the afternoon. I'm  not giving in to this! 

Sometimes that's all it takes; allowing yourself to go to sleep to wake up to a new day. I don't understand all that is happening to me, and every now and then I find myself feeling the edges of anger but I don't want to go there. I'm not suppressing it, I just don't want to go there. Is it faith? Maybe. YES. I honestly do believe there's a reason for everything. I don't pretend to know what the reasons are or if the reasons make sense. I believe to get to point "c" you must get through points "a" and "b", and sometimes those points in between ain't so pretty...but skipping them isn't an option if I want to keep moving forward.

My daughter mentioned karma the other day, wondering if it really works the way we think it does. I was glad she said it out loud because I have those questions myself, but in the end I have to believe it comes around. I only have to look at my children to know beyond certainty that YES karma does as karma should and there is absolutely a reason for everything. I don't like that my kids are worried about me--I don't like that I'm worried about me lol; but being surrounded by love (and mess, and chaos, and crazies) fuels me to know that if nothing else, each tomorrow is a new and fresh start.

Don't doubt your courage, it's in you. I'm scared at times--there, I said it out loud. I'm going to advise myself as I would any of my family and friends and recognize that even though I might be afraid at times my faith and COURAGE will carry me forward.

My Life Now as an Autoimmune Cocktail

I've been waiting until my oldest was back from Israel to write about what's happening. She's back safely in the US, so here I am!

It appears I have an autoimmune disease cause Dermatomyositis (DM) with lung involvement known as Interstitial Lung Disease (ILD), along with Rheumatoid Arthritis (RA). There is also Raynaud's Syndrome, Celiac Disease, and of course Fibromyalgia (though I wonder about that one...), and I tested positive for Sjogren's and Lupus is also in consideration. Fun times! lol.

 I am scheduled for surgery to have a deep muscle biopsy next week to confirm the diagnosis of DM and soon after will begin treatment with Rituxin, a chemo drug used as an immunosuppressant for both DM and RA and particularly for people with lung involvement. I've been on prednisone off and on since early May; each time I've weaned down and off all symptoms come flaring back (fever, extreme stiffness/swelling/pain, rash--to the point that getting out of bed without help isn't possible), so I'm now on a maintenance dose of prednisone that at least keeps me functioning! 

I'm not going to go into details just yet of any of the diseases until I get a final diagnosis,  because many of my symptoms line up more with one disease than the other, with lots of overlapping; this is actually extremely common with autoimmunes--it seems they like to each bring friends to the crazy immune system-gone-haywire party. In a very small nutshell, the 3 main players (as it appears right now): 

• DM (and possibly polymyositis PM)--immune system attacks the muscles in the body
• ILD--immune system attacks the lungs
• RA--immune system attacks the joints (and can also go after muscles and organs)

Right now the main concern is the lung involvement; I know that is why my rheumatologist has already put in the request to insurance for approval of the treatment plan before final diagnosis so we don't have to wait as long for that. 

Emotions are all over the place, though the main thing I'm feeling is FRUSTRATION. As my wrists and hands get weaker I'm dropping things all the time and it makes me crazy. I trip a lot more than my usual clutzy self always has because my ankles and knees tend to give out on me, and I've begun to have some balance issues that I can't tell are from the new dizzy sensations I get or something with my eyes. Typing is torturous at times as the bones on each wrist and fingers hurt to the touch. Each morning when I wake up I think okay, today's the day this will all be gone; I turn over in bed to get up and the pain in my knees tell me otherwise. I'm exhausted usually by around 11am; and where I used to be able to work 8, 9, even 10 hour days no problem now I seem to hit a brick wall after about 4 hours. I'm pushing through because I know the worst thing I can do is stop moving, I know I have to keep moving no matter how small it may seem compared to what I used to do and I'm gonna keep on keepin' on. 

I've already heard all the different ways this can be "cured," like juicing, supplements, willing it away, eating this/drinking that. I know people mean well and want to help but while I do believe there are some things that can certainly HELP some symptoms, medical treatment is what is needed. I'm sure many of you have seen headlines on social media "I cured my ______________ with this one ingredient!" Yea, nope. Read the full articles and/or research and you'll see probably 99% of the time they have and/or ARE taking some type of medical treatment. 

There is no cure for any of these diseases but the treatments have come a long way especially over the past few years. I believe in and trust my rheumatologist and am so ready to get this treatment party started!

Acceptance is Beautiful

So thankful for the very special people that have entered our lives who have been deemed a "buddy" by my #ASD youngest. They are the people that just accept him and enjoy him and embrace who he is; they have been our own personal savior at times without knowing it, and I mean that sincerely. Yesterday was a very difficult day for Z, lots of stress and triggers and challenges. As his "everything should be happy and good" thinking struggled to fix all the things that went wrong he just was so overwhelmed and had a headache and was dizzy and nervous. When he realized it was Jeff day he wanted to go see his CVS buddy, but was so stressed that we almost left the store as fast as we got there when he didn't see J right when we got in. 

I found someone to ask if J was there and when the answer was yes and that he just stepped to the counter, the smile that appeared on Z's face brought tears to my eyes. They laughed and talked like always. Everyone that works at the store (or almost everyone) knows Z and they welcome him and they know J is his buddy. This guy (J) always makes time for Z and/or has Z go around the store with him as he works. I can't count how many times I've tried getting Z to let J work because I'd worry he was bugging J, and both of them would do the "oh mom" eye roll. Jeff and all of Zach's special buddies over the years, have had incredible impacts on Z's life and therefore also on this grateful Mama's world. 

Movie Meltdown

When you go from him having the most amazingly terrific day to him having one of the biggest meltdowns he's ever had, you're quickly brought back to autism. He pinched a nerve in his neck--you know that feeling, it happens to everyone; but for him it was wrong, it shouldn't happen on such a good day and it was scary and devastating. 

We had hoped he'd relax once in the theater to see Star Wars with his sister. I dropped them off and went to a much put off (years) vision exam for glasses. The bright side is the phone didn't ring until the exam was actually over (about 30 minutes into the movie); sister called to come pick them up and I could hear him crying in the background. Got my contacts back in and rushed over. 

Poor both of them. She was so disappointed about the movie AND for her brother and yes for herself too, and he was just totally and completely in the throes of anxiety. He could not understand why it hurt so much and why I couldn't fix it right then and there and was certain he was going to barf or die, or both lol.  

Motrin is starting to help and with pain relief is coming the beginnings of reality for him which translates to remorse and regrets, both things which are sure to fuel more stress and fallout, but less than this initial round today. He keeps bringing up feeling bad for his sister, then changing the subject as he tries to turn everything back positive again. 

My heart hurts for both of them. All will be better and happy again, my heart just aches for both of them tonight. 

Life Lessons by Zach: Different is Good!

He told me to come look at what he did. "See the Knights not colored? Now look at my Knight." He floored me again. #WordstoLiveBy #DifferentisGood #OutsidetheBox #Autism #ASD 

Memorial Day 2015

Wishing everyone a beautiful unofficial kickoff to summer and hoping your beach/pool/barbecue days are filled with laughter and joy as they should be--but try to take a moment to remember why we celebrate this day.

Each and every time I hear "Arlington" by Trace Adkins, I cry, such a beautiful song and perfect to bring us to the meaning of the day:

"Arlington"

Writer(s): Jeremy N. Spillman, Dave Turnbull

Copyright: Songs Of The Village, New Sea Gayle Music, Emi April Music Inc., Universal Music Corp. 

I never thought that this is where I'd settle down,

I thought I'd die an old man back in my hometown,

They gave me this plot of land, me and some other men, for a job well done,

There's a big white house sits on a hill just up the road,

The man inside he cried the day they brought me home,

They folded up a flag and told my mom and dad, we're proud of your son

[Chorus:]

And I'm proud to be on this peaceful piece of property,

I'm on sacred ground and I'm in the best of company,

I'm thankful for those thankful for the things I've done,

I can rest in peace, I'm one of the chosen ones, I made it to Arlington

I remember daddy brought me here when I was eight,

We searched all day to find out where my granddad lay,

And when we finally found that cross,

He said, "son this is what it cost to keep us free" Now here I am,

A thousand stones away from him,

He recognized me on the first day I came in,

And it gave me a chill when he clicked his heels, and saluted me.

[Repeat Chorus]

And every time I hear twenty-one guns,

I know they brought another hero home to us

We're thankful for those thankful for the things we've done,

We can rest in peace, 'cause we are the chosen ones,

We made it to Arlington, yea dust to dust,

Don't cry for us, we made it to Arlington

Sports Unity Program

Sounds of laughter amidst applause and cheers. Just what you'd expect to hear at a youth sports activity--but not always what you'd expect to find in a special needs sports program. My heart soars with joy each and every week we are here.

We started with the Marlton Sports Unity Program (SUP) for winter basketball. Z didn't really want to try basketball but after finding out some of his Lenape "boys" were basketball players he agreed to at least try. He wouldn't smile at check in and hung back just a bit once inside the gym, but not more than 5 minutes in a couple of the adult buddies had him out on the court and playing.

He stayed involved and interested the whole season and, when he found out they were giving out trophies one night at practice he lamented "why do they have to stop?"

Getting his trophy from the VERY special
and awesome Coach Dave

I found out there would be SUP track in the spring along with soccer (his favorite sport). I told him I'd signed him up and waned him to just give it a try. As much as he didn't want to try basketball was minimal compared to how he felt about track. April brought the beginning of track and he was nervous about starting. His buddy was laid back but welcoming and encouraging and he was off to give it a try. Now not only does he keep trying but he is working hard to excel! This boy, who hated any kind of running now trying each and every activity leaves me speechless. Running is hard for him: he has loose ligaments and very low muscle tone which makes it exhausting and difficult to run, and the jolting of running along with that feeling of speed (noises of even the wind rushing past/losing a feeling of control over his environment ) are menaces to his sensory system. Yet I see him having a blast and enjoying each moment!

Coach Scott getting in on the action to show Z technique,
with buddy Karly right by his side.

Coach Scott giving loads of one on one tips
for the Javelin throw

Z keeps working hard for Coach Scott, and his
awesome buddy Lindsey.

 

  Obstacle course running

High fives after javelin work ;)

The buddies with SUP must attend a training session where they are educated about things they may experience with the special needs kids and how to address many different potential problems (redirect, soothe, comfort, or even disengage WITH their player from the activity, among many others). They are also told they will not have cell phones out, will not be seen inactive or without their player, and WILL not be tolerated if seen laughing at/about a player. The training shows. These kids, each and every one a volunteer, show more compassion, acceptance, and enthusiasm than many paid adults I've experienced in the special needs fields! 

Mark VonBerg began and runs the Marlton Sports Unity Program which includes the activities of soccer, track, basketball, karate, cheerleading, and soon introducing street hockey. Did I mention every program run through Sports Unity Program is FREE? Thanks doesn't begin to cover it but I'll say it anyway,

THANK YOU!!!

Going Color Blind for Autism Acceptance/Autism Awareness

Each year as World Autism Awareness Day rolls around, a storm begins to brew. This year it seems to have become a behemoth of a storm, with loud rolling thunder and some nasty lightning strikes amongst people that are usually incredibly supportive of each other, sowing judgmental comments and hurt feelings with each click of the mouse.

Aren't we all striving for the same thing? ACCEPTANCE! So let's get to it! Gold for Autism Ausomeness and Acceptance? Puzzle Pieces for Perfect Pervasive Developmental Disorders? Blue for Autism Awareness? And on and on and on....? SURE! All of them are perfect. It's about starting and maintaining conversations to educate, right? Let's stick together and accept each other and realize we are all living this life together.

I like blue. I don't see it as sad as many have said. When a storm clears during the day, what do we look for? Blue sky. See my point? Know what else we look for? A golden sun. And sometimes we even see pieces of a rainbow.

Autism is every day for those of us with kiddos on the spectrum. It's laughter and tears, hugs and meltdowns, milestones and struggles, every single day. We need each other every single day to voice our fears, concerns, and JOYS. Let's come together and stay together and lift each other up.

FREE $15 CREDIT TO BUY KIDS' CLOTHES!!

Yes, this is real and legitimate! If you click on my link Schoola--Pass the Bag and Support Your School! you will see not only an amazing assortment of clothes, shoes, and accessories for kids from preschool through high school, but also after you load your shopping cart you'll see you will have a $15 "sharing" credit! No minimum to order and just for today, shipping is free on any order!! Yes, lots of exclamation marks cause this is terrific! AND FREE!! 40% of every order goes to a school in the US so this really is an incredible win-win-win. On the site you you can also get details on how to support YOUR school, too!

Happy Shopping and you're welcome. Let me know if you order! I got a pair of jeans for my teen daughter and a nice top for my son for $11, can't wait for them to get here.