One Year Later - Strength Comparison

CK Down Again

CK is 252 (38-234 is normal)

2 Years ago it was around 8,000

Now we can start tapering the 10mg Prednisone and hopefully get off it altogether.

One Year Later

As one year has past since my treatment, I can only look back in amazement at how much has changed. I not only have regained strength, energy, and independence, but rediscovered happiness.

One year ago, I was struggling to get off the ground, could barely make it off a chair or up the stairs. I could not lift my neck, cross my legs, put my arms over my head, lift my son, walk without a stick, or go through a day without a nap.

Today I can do all of those things and more. I have jumped back into life and our big news is, after 2 years of waiting, our daughter has finally joined our family. We traveled to Ethiopia to bring her home in late July. Yes, I traveled and all was fine. She is proof that anything is possible if you don't give up.

Thank you to the family, friends, and strangers who helped me through. All is not perfect, but little by little we are getting there. When you lose so much, gaining anything at all seems like a miracle.

Please pass along this treatment to others who are suffering with auto-immune conditions to see if they qualify.

Cheers to a Happy Holiday season and a Healthy New Year!

Normal

Closer to normal once again..
CK is down again to 306! (Normal is 38-234).
Still noticing small changes in strength. Bending from the waist to touch the floor and up without pushing off legs. Pulling Graham in the bike trailer, carrying baby and groceries up the stairs...."yes we can"...

July CPK

Down again to 429 now! Every month things are normalizing- well for CK that is=)
Normal is 38-234.

Vaccination Update

Today I got my titer results back and found out that all the travel vaccinations I had done before HiCy are still in my system and giving me immunity. This is great news and means I do not need to be re-vaccinated!

Down Again

CK is still moving down...537!

CK Steadily Down

CK was 613 for May which is down a little from last month. It isn't moving fast, but it is still moving which is good. I am still at 10mg of Prednisone a day and we are going to discuss how long I will stay there at my next appointment. I am not too anxious to change anything up until I am officially in the "normal" range.

I am happy to say I made it through a few Spin classes and find that it helps to have loud music and someone making me push myself just a little bit more. Working out sure isn't what it used to be, but with good friends around it is at least bearable. Our YMCA is like family. I was looking into this raw vegan protein powder that I think would be beneficial for the muscles after a workout. I am still juicing during the day, wheatgrass and a green juice (kale, celery, parsley, cucumber, ginger). I am not crazy with being restrictive about foods, but I do now know what is acidic, what has sugar, etc. and try to eat smart. I have found a nice balance of not intellectualizing food and actually enjoying it now.

Not running yet and I am not sure if that will ever happen. It frustrates Graham which in turn saddens me because there isn't anything more I would want to do than run with my son. He tries to understand in whatever way a 5 year old can, and I try not to say too much to him and stay positive. I tell him that I never give up and we are going to train together and who knows what can happen in a few years. Who knows what the future of science will hold. I will zap some muscle-head's bicep into my hamstrings- sure- I will see if it works if it means I can run. So for now I do a nice slow plod, a few paces and back to walking.

Luckily I can keep up with many other things. I am especially proud about how my karate kick is high once again, walking is steady, I can pick up things easily, I lifted a 50 lb bag of mortar the other day, I can dance, and I can raise my leg over logs on trails or babygates.
ahh I'll take whatever this body will give....

Amazing New Muscle

Something clicked this month and I am able to do so many new things. ...
I can bend over and back up with legs straight. I don't have to do the funky tuck thing with my legs bent.
I can lift my head from lying position! This has always been my most challenging thing.
I can extend my leg out when on all fours.
When sitting, I can lift my knees up and actually clear the table.

I am amazed at how the body can heal. I am so thankful and so happy to be back!

My good friend with MS is going to do HiCy in Chicago soon. We can't wait to watch her progress!

Hair 3 Months Later

To satiate the curious family and friends...

March CPK

CK is down to 660 now!
Shingles doesn't seem to have triggered anything!
Yay.....Whoopie.....Yeehawwwwww!

Shingles

I am following the 10-20% trend of patients who, after HiCy, have an awakened form of Chicken Pox- Shingles. I was glad to have the Post-HiCy Care info on hand and am now on Valtrex as an anti-viral. I cannot give another person Shingles but there is a small possibility that I could give Chicken Pox to someone that has not had Chicken Pox or was not vaccinated against it. It is unlikely that I would spread this to others with it being on my side and covered by clothing. I first noticed a tender feeling on my side and then in a few days there was a bumpy red rash that followed the nerve line on the left side of my body.

This was not suprising, not too uncomfortable, and easy to treat.

Ignoring the peripheral fear of flares is not so easy.

MRI

I had my MRI of the legs at the beginning of March and we were pleased with the decrease in inflammation in comparison to a year ago. It was better but surely not perfect and present in the areas I know are the weakest- hamstrings and gluts. Not sure what is permanent damage, but the goal is to build up the muscle around the damage. I have decided to do physical therapy on my own.

We decided to start tapering a bit to 12.5 Prednisone and I am doing 10mg/15mg back and forth each day for a month. Not sure what will happen once I am at 10mg.

I received a photo/video release in the mail the other day for the film that I will be in for Hopkins. That should be interesting watching me try to communicate clearly while nauseous. Speaking of movies, a friend just showed me a small independent film shot about the friendship between a woman with Polymyositis and a boy with Autism. It is called "SideCar." (http://www.sidecarsfilm.com/) It sheds light on the possibilities that form with friendship, the severity of Myositis, and the uniqueness of the autistic mind. We all have something we carry around with us that shapes our world but does not define us. A nice reminder to get past what's on the surface.

CK Finally Moving!

Good news to report today. CK finally is lower from 930 last month to 792 this month! We ideally want to be in the 300 range at least and hopefully will make it there. I can't really tell a difference anymore with numbers and strength. I still feel the same and that means stronger and without fatigue. I am overjoyed about all that I can once again do. Throwing Graham on my back after a hike and walking up a hill with him rings a tune of normalcy that I can't get enough of. I finally feel as though I can blend once again and don't have "disabled" smacked on my forehead.

Hair has now returned and is getting thicker. Dry skin issues resolved themselves awhile ago and I think was just a side effect of the chemo not the antibiotic.

I exposed my new hair to the world for the first time today. Shampoo is still just a novelty.

February Update

All is still going well. Building, building, building, slow and steady. Pacing myself is key and stopping before I have gone too far with doing too much- gym or home. Still finding little surprises- not needing the railing of the treadmill, doing a higher leg lift, making a more smooth transition from the floor... I repeat it over and over to see if I was just imagining it and no it wasn't a dream, and no it doesn't last long. The muscle tires quickly. I carried Graham up the stairs with one arm (the other tightly gripped to the railing, but hey I'll take it!) I think he is up to 45lbs. CK is still 930 and that may be my normal for now. Hair is slowly returning.

I tried to ride my bike but quickly knew that my balance, coordination, and strength is not ready for that endeavor yet. Keeping two feet on the ground is smart.

More Discoveries

Flying airplanes are back and I don't have to use my hands when crossing my right leg or push off on thighs when getting up. The left leg cross and getting up are far from graceful, but I never really was.

Follow Up

I had my follow up appt. today with my Myositis doc and it felt good to be at the other side of the treatment. I remember leaving the office in November pretty nervous and unsure of it all. After hearing that I do indeed have SRP for sure, I am glad that I went forward and didn't waste any time. Once again I got to show my progress and the challenging places- hip flexors when sitting and neck when lying down still don't do much of anything. Everything else I scored well in comparison.
Interesting to find out that there was no other Myositis patient that did HiCy. The doc had me confused with Myasthenia Gravis. Oh well- I was glad to have that positive image of a guy doing black diamonds on the slopes as I was starting treatment. I am hoping to try some bunny slopes soon...somewhere with noooo trees close-by.
Next visit in March I will do an MRI of the thigh to really see what the "damage" is.

2 Month Post-HiCy

Reality Check

After all the excitement of going through with the treatment and seeing some exciting progress, reality has set in. I have a long way to go in terms of physical therapy and will need to wait awhile to see how much muscle I really can regain. There are many bad habits I need to break in how my body has compensated for the weakness. Retraining the body to move like it should and not do what is easiest, is my challenge. Every move is intentional and connected to a thought.

A lot of work is needed in the legs and back to be able to climb large steps without a railing and to be able to pull up my upper body when getting up from the ground. Doing bridges, lunges, squats, and forward bending. Arms can now be lifted overhead when lying down and we are up to 2lbs. Walking backwards is easier. Walking forwards is good after I have been walking for awhile to warm up but still takes a conscious effort to not lean back, to not swing legs, to engage the right muscles. I don't feel as nervous walking unassisted but do always sigh a bit of relief when I reach something to push or a hand of support.

After HiCy you take an antibiotic for 6 months and I hope to change to something other than Bactrim since my skin is very itchy. CK is a little lower but still around 930.

So improvement is real but I always strive for more. I sometimes push too much at therapy and then the fatigue follows. Finding the balance...