A Bit of an Update

[Zizzle]

I had the pleasure of meeting Joe for lunch in DC when he was visiting for work. We enjoyed a lovely meal at McCormick and Schmicks and took a stroll by the White House.

How long until you can get off of the prednisone?

Joe,
My rheumy just slowed my taper to 1 mg a month, so at this rate, I won't get off for another 9 months!!! That was not what I signed on for...a year of prednisone . But I have tolerated it quite well. From what I hear with DM, slow and steady wins the race. No one wants to have to bump up the prednisone dose because they tapered too fast. Luckily I have a disease that promptly tells me when things are flaring - skin rash or muscle pain.

Now as I drop below 10 mgs I need to re-double my efforts to eat paleo full time. Although the pred and plaquenil are just starting to give me mild stomach pains...the kind that call for a piece of GF bread or starch to settle things. Ugh.

[Kari]

Joe,

As so many others have already expressed, your courage and perseverance in the face of so many physical "complications" are truly inspirational. I'm sure your positive attitude is a great help in dealing with it all. Thank you so much for sharing your journey with us here - I wish you all the best as you continue to focus on the "silver linings" of what life brings your way. You are a truly amazing person and it is an honor to know you through your posts here.

Love and hugs,
Kari

[jmayk8]

Hi Joe,
I am very sorry to hear about your recent dx. You have such a positive attitide and I look up to you for that. Truly inspirational. Please let me know if I can help out in anyone, give Nestle a hug for me!
Jenny

[Sheila]

Joe, have you heard about 23andme? Website www.23andme.com. The company was started by the wife of the founder of Google. Costs $99.00

You fill a container they supply with saliva, mail it back to them and in 6-8 weeks you get a comprehensive report of your genetic make up. I have three autoimmune issues at present and would like to know if something else is coming down the pike.

I expect to get my results in about 6 weeks. Some people are horrified and don't want to know what may be possible but I think it will be quite interesting.

Sheila W

[Joefnh]

Hi Sheila and thanks for your kind words, I appreciate the reference that your friend can still play some tennis, she must be having a real ball

I like the idea in your other note about genetic mapping, that might prove to be interesting given whats developed already. Thanks!

Tex, Thanks for checking if she had surgery as that's the next decision if it comes to that. The more info the better when it comes to things like this.

Joann I really do wonder how strong I am...I believe what's important is just choosing your attitude, we do control that and that is the basis for what I do each day and each hour. In life we are challenged by all sorts of things, how well we do is in a big part due to our attitude at that moment. Thanks for your kind note.

Rich it's good to hear from you, it sounded like in your other note that work has been busy. My rheumatologist mentioned once that once you go fishing in the AI pond, you can't take just one fish...so true...and I like fish, just not ones from the AI warehouse

Hi Monique...you speechless....now that's a real problem No I have not tried LDN but will read up on it, I know a few have tried it for MC. Have you ever talked to a doctor about how it affects the body, other meds etc?

Thanks Jean...not sure about being an inspiration .... There are times I drive Tex nuts though. Seriously though thanks for your very kind note.


Leah for me I have had to just learn how to choose how I deal with each day and it really comes down to attitude. Am I as strong as I seem, no I doubt it, I have bad days and good days...but I can't stop, I can get stronger and choose to do have a better day.


Lesley thanks for your kind note.. You know Lesley the real hero sheer are each of you, that's where I get my strength, I certainly do not have an endless supply. Having a group like this is where our strength comes from.

Zizzle that was a great lunch, thanks again for setting that up. I'm glad you have a plan on the prednisone, hopefully I can hold off of the oral steroids for a while, I still have to deal with the spinal ones. Its great that your rash has responded favorably.

Kari long time no see...how are you doing with your diet and MC as a whole? I'll tell you I miss Colorado....such a lovely part of the country. I was going through old photos the other day and found the albums from the Colorado days when we lived in Woodland Park, those were good years. Being a Colorado native, you know we have to mine those silver linings when we find them.

Jenny how are you doing? Thanks for your kind note and yep Nestlé got an extra hug, she never refuses those. How are you doing with the chest pain? Any better.



Thanks so much for all your responses, I'm more than a bit humbled at all the wonderful people here, you ask how I'm so strong, it's due to each and everyone of you....Thanks so much for all you do here!

[Martha]

Dear Joe,

I join the others in grieving your new diagnosis, and applauding your strength and positive attitude. You are an inspiration to us. I like what you said about how we control our attitude; no matter what life throws at us, we choose our response.

With all my best wishes,
Martha

[Gloria]

Oh, boy, Joe - not another autoimmune problem. I hope you don't need the surgery and the meds do the job for you.

Your positive attitude will go a long way in helping you deal with these new problems. Please keep us updated.

BTW, how is your son doing since he graduated?

Gloria

[Lesley]

Joe, while I agree that the collective strength of the members of this board is what gets most of us through difficult times, and that this disease is CRAP to have to deal with on a daily basis and would be way worse without all of you, you seem to really be getting the roughest deal when it comes to additional painful and debilitating dx's. Each time it seems you have MORE than enough for one person to handle another difficult dx comes along. My knees would have been knocked out from under me a long time ago, but you deal with it with humor, self deprecation and courage, and I, for one, am in awe.

[Polly]

Hello, my very dear friend! Great post!

Just weighing in here. Of course, I agree with everyone else about your courage and attitude. And you know I wish I could wave that old magic wand and banish your AI diseases forever. You set such a great example for the PP, who are dealing with fewer AI conditions than you for the most part.

Joe and I became email friends initially after meeting on the PP Board. Then, we met in person for a crab feast when he visited Baltimore June a year ago. (In fact, my avatar photo on the left was taken by Joe at that time!). Now we are the best of friends and share our concerns with each other - by phone as well as email. I consider this one of the best silver linings that came from having MC.

Joe, you are a very special man.....a hero for sure!

Love,

Polly

[JFR]

Understanding that I can control my attitude has been as important to me as learning that I need to control my diet. In fact the 2 work together. To the extent that I can accept the challenges this life presents me with, I am freed up to figure out how best to live my life rather than feeling trapped in an unfair world. I probably have mentioned this before but when I was able to say to myself "why not me?" rather than continually think "why me?" life got much better because I could get on with the business of living with what the present moment was presenting me with rather than being stuck in what I had lost. It didn't come naturally to me but once I figured out that I was responsible for my own happiness regardless of my circumstances, I started being able to enjoy life a lot more. And there's always Joe to help inspire me, which he does.

Jean

[JLH]

I admire you and hope and pray for the very best for you. I wish I could be as brave as you are instead of being so stressed, depressed and anxious.
You are a great role model, I'll try to do better.

[Kari]

Hi Joe,

Thanks for asking about me. You are right, I've been away from posting for quite a while and your post is what brought me back :). Even though I haven't posted, I have visited and read many of the threads. It is amazing how this PP family is forever renewing itself with new, wonderful members picking up the slack and helping each other. It is also very comforting that so many of the "old-timers" are still around.

As for my MC symptoms, I'm still struggling, with norman stubbornly keeping his distance. I used to spend so much of my energy trying to perfect my MC management, but found that it caused me a lot of additional stress, which tended to worsen, rather than help my symptoms. So over the past several months, I have turned my energy to something imminently more enjoyable, namely "YOGA". Last month I got my certification as a yoga teacher, and am now in the process of figuring out my next steps.

The frustrating thing about my diet is that my intolerances seem to be in constant flux. For instance, I had several GAPS treatments for eggs, which enabled me to start eating them again. Since it's such a great source of protein, I started having an egg with breakfast every day - WRONG!!! This week, I finally figured out that I'm reacting to them again, so now I have to rethink my breakfast :(. I attribute my inability to get into remission to my MC being untreated for 10 years before discovering the diet angle - a lot of damage surely happened during those years. However, I feel reasonably well most of the time, and really cannot complain. With this disease, acceptance and a positive attitude go a long way toward the all important peace of mind.

You set a great example for all of us with your amazing attitude and equanimity in the face of so much adversity - thank you for that!!!

With love and admiration,
Kari

P.S. Hope you come out to visit Colorado one of these days, so I'll have the opportunity to meet you in person.

[tex]

Joe,

Do you happen to know your 25(OH)D level these days?

Tex

[Joefnh]

Ok guys now you've gone and done it!!



You've made me blush big time...

I think this goes to prove my point, our strength comes from each other, not so much from within....certainly thank you for all of your wonderful responses.

Hello Linda thanks for your note, these are very encouraging and I thank you for that.

Hello Gloria, my son Joe is doing quite well, he is now stationed in New Mexico at an AFB which I can't disclose for security reasons. He is working with one if the AF special operations groups on advanced avionics and propulsion systems, he lies it, like a kid in the candy store.

You know Lesley right now I am having a rough time and it might seem like it's more than my share, but let me leave you with a thought that Polly had mentioned me just a little while ago. We are all born and we are all going to die, we are all going to get injured and sick to one degree or another during this life, none of us can escape that. Now knowing that, whats important is what we learn about ourselves and how we deal with those times that will happen in our lives. We shouldn't fear sickness and injury for they are a guaranteed part of life.

This actually ties in with Jeans very astute observation

Jeans (JFR's) Quote

To the extent that I can accept the challenges this life presents me with, I am freed up to figure out how best to live my life rather than feeling trapped in an unfair world. I probably have mentioned this before but when I was able to say to myself "why not me?" rather than continually think "why me?" life got much better because I could get on with the business of living with what the present moment was presenting me with rather than being stuck in what I had lost. It didn't come naturally to me but once I figured out that I was responsible for my own happiness regardless of my circumstances, I started being able to enjoy life a lot more.

That's such a profound and powerful statement Jean

BTW Jean thanks so much for showing me how to make the kale chips and the lamb burgers during our visit, those have been a staple in my diet, I just had that same meal for lunch today.


Polly "Hero" now your pushing the blush buttons quite hard You know Polly once I'm well enough I believe the doctors orders are for as many Maryland blue crabs as possible...I'm fairly sure that what Dr. Hughes said. Polly thanks again for all you have done. Certainly the friendships we make on this site are a priceless silver lining.

Hello Joan don't worry there is plenty of stress and anxiety in my world, those are only natural reactions it's what we do with those feelings that counts, do we let them rule? Or do we recognize for what they are, why we feel that way and then choose to not let them take over our lives. Actually doing posts like this helps me with my anxiety and stress, it has allowed for a place to let those feeling go and share with friends how I am doing.

Hello Kari, a trip to the Rocky Mountains someday sounds great. I will get back out that way, there are a few scientific conferences a year in Denver so it would be easy to make it out that way. A far as Norman, for me it's come to mean what 'normal' for that day...this reduces the stress of that quite a bit.

[Joefnh]

Well thanks again all for your more than generous comments and support, I was more than surprised and quite humbled at this generous outpouring of support... Thank You

I would like to give an update about the medical issue that has developed over the past few days of this week.

The testing this week included various blood tests and testing to see how the muscles function, and once the blood test results came back on Friday my doctor was able to choose a medicine and strength to begin treatment.

I did not go into work this week and received a call at home from my doctor on Friday morning that the blood tests showed fairly high levels of the antibodies that the autoimmune nature of this disease produces which results in loss of muscle function. She was a little concerned at the levels and called in a modestly high starter dose of a medication called Mestonin which is a medication that allows for more of the chemical (acetylcholine) to remain in your system allowing your muscles to work correctly

This is my first time taking this med so per her instructions I took the first dose just about 11AM and by about noon time I could not believe how quickly and thoroughly this made me feel better. While driving home I noticed that my vision was improving rapidly, the double vision had disappeared and my focus was sharper that it had been in quite a while.

I also had this what could only be described to be a warming sensation in the various muscle groups throughout the body and then I noticed how it became easier to breath.

Now whats interesting is that I did not know I was having a hard time breathing, but the difference was quite noticeable. It's amazing what we get used to.

The other amazing improvements were how much looser all my muscles felt and how easy I could move the various parts of my body and most importantly how much stronger I felt all over and how well my legs started working. I had got used to them being weak, stiff and not very well coordinated, I was attributing all of this to my spinal issues. Well that's apparently not the case

Overall it's interesting how over the past year or so I have been 'blaming' a lot of these symptoms on my other maladies.

Well it's day 2 of taking this new med and I feel the best I have in a long long time, I even had the strength and fluid movements and coordination to play my 12 string acoustic guitar with some classical music today. I haven't been able to do that well for at least 2 years.

With Myasthenia Gravis (MG) a good response to a Cholinesterase inhibitor medication like Mestinon is by itself a means of confirming the diagnosis of MG.

Right now I am taking a 30mg dose of Mestinon 4 times a day and I can really feel when the previous dose starts wearing off.

Well for now the treatment of Imuran and Mestonin is working well. I look forward to being more physically active to be able to improve my overall strength.

Thanks again for all of your support and wonderful comments.