Merry Christmas and Wishes for a Successful 2015!

Merry Christmas to all and Wishes for a Successful 2015!

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How do you define success? The world defines it as achieving a set goal, either your goals or others.

My goal was to be normal this year, ok you are all laughing because
I will never be normal, and like success, normal is different to everyone!

Normal to me prior to Sarcoidosis was doing everything for everyone, often doing 5 things at one time, and doing everything at my own above average expectations! You know Super mom!

Although I really didn’t believe when the Sarcoidosis Specialist said in one year I would be back to normal, part of me was hoping, wishing, wanting it to be true! I set it as a goal, a goal I couldn’t achieve!

Am I upset about what then world would say was failure ( lack of achieving success)? Nope because I have success, I just was confused about the goal part!

I can work a full day,
I can make suppers again,
I decorated my house on my own,
and wrapped the majority of the presents myself.

Sure I wasn’t in the hustle and bustle of spending days shopping, I may have to make simpler suppers, and have someone else still clean my home, but I achieved what I needed too, with out stress I didn’t need!

In November Todd and I spent the most relaxing vacation ever, we did shopping or other stuff in the morning, but the afternoons were spent reading and relaxing!

In the last year I learned life is about pacing and changing inconveniences like turning sleepless nights into opportunities ( you can shop online any time of day!)
Pacing involves finding ways to avoid stress, like signing your Christmas cards in February? Is there less love involved if I didn’t sign them in December?

I don’t believe that God failed me, I think the stress I put on myself is not what God would define as Success! So as we face another year are your goals achievable? Or even God honoring? Or even what is good for you?

I won’t deny, I want to be able to
Go shopping without exhaustion,
Be able to do more for others,
Breathe without Struggling
and I would LOVE to get rid of the latest symptom
(being off balance/ tipsy / swaying like a drunk)!

But I can successfully
be a good mother,
loving grandmother,
example to others
and efficient worker despite battling health issues!

So despite what the world sees as successful,
I can still achieve what God sees as successful and that’s all that matters!

So once again I wish you all a Merry Christmas and a Successful 2015
(you just get to decide what that successful part means in your own life)!

Thanks to all my friends for all the prayers, love and support you have given me in the past 15 months of this journey!

Debbie

The big UNKNOWN

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Unknown

Not known; unfamiliar.

Not identified, ascertained, or established.

That explains my medical problems, After thousands of dollars of testing, 100’s of miles traveled, and numerous different doctors, and the fact that they are all in agreement there is something wrong, I still keep hearing that the reason for my extreme breathing is UNKNOWN.

We have ruled out so many bad things, which is awesome… But still no one can pinpoint the biggest problem.

The latest is they believe I have Fibromyalgia with it (so add some meds for that) and I am having some vision issues so add daily eye drops and i will go for Glaucoma testing in December.

The University of Michigan doctor decided treating my Sarcoid is of no benefit and is weaning me off medications. He says the lymph nodes may never shrink and my nodes in my lungs are stable. I began weaning off Prednisone a couple months back, and after a year on it am officially off. In October we begin weaning off methotrexate. What does this mean? I really have no clue.

He says its not my lungs or heart causing it. He does want to check out my electrical wiring due to recent issues of being tipsy, and I will get to wear a heart monitor in the near future.

I will not go back to U of M again until February, but my local Dr keeps searching for solutions.

So the issues of extreme fatigue, breathing issues, numbness due to my body hyperventilating and lack of strength because of it still remains a mystery.

It is like going all through college, paying tuition, doing everything they say, passing all the tests, getting the credits and leaving with no degree or plan for the future.

I have good days and not so good days, I am thankful for all I can do, but down deep I was really hoping for a reason, or better yet a solution… But it is all in God’s timing.. And if there isn’t a solution that I will truck on through life the best I can!!

Focusing on being thankful for the little things!

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I am trying to focusing on the little ways I see God instead of the frustration of going backwards with my health again.

An example of the little things:
Last week, nervously I went to Costco by myself, I got there and parking lot was packed ( including handicapped) and as I pulled in someone pulled out right up front ( thank you Lord), I filled my cart and amazingly I was next in line at checkout- and we all know that in itself is a miracle at Costco!! ( thank you Lord), and the clerk said I can unload that all for you ( thanks again). See if I focus on the little things I can see him helping me through this!

This weekend we had a wonderful relaxing weekend, and had some fun with friends. My huge chicken package I bought from Costco resulted in supper with friends, with Todd grilling and they each brought a side dish. A great fun supper and limited work for me! I am thankful for my dear up north friends who encourage me and support me so much!

I am also thankful for my two FAVORITE little things God has blessed us with (Braxton and Kenlie) who give us so much love, enjoyment and lots of laughs!!
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Another couple little things ( sorry girls couldn’t resist) are the great girlfriends God has given my boys ( they are both just a little vertically challenged), but are lots of fun and great additions to our family.

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(The taller ones came down to their level).

As for an update- two weeks ago, after seeing much improvement I have totally gone back to extreme breathing difficulties again, weakness, shaking, and back to only being able to work a few hours a day. As usual the doctors have no reason for this happening! I do know the humidity is challenging, but that isn’t the cause, and I am being weaned off prednisone, but this started before I dropped to the next level. So once again I am a mystery haha!

My U of M doctor did call a few weeks ago and wanted to schedule another type of test (CPET) and we go Friday back to University of Michigan hospital to have it done. They did warn me due to so many factors involved in this unusual test it will take a while for the results

At the same time Todd had his nerve endings in his neck burnt ( he had it done a year ago with great results, but they grew back). He had his neck fused years ago and has chronic pain and lots of arthritis . It isn’t where he hoped so they are going to do a cortisone shot this week, and we pray that brings him some relief!!

The two of us are quite a pair, but we refuse to give up so we just keep trucking through life ( even if some days we are in the slow lane) and are thankful for all we can do compared to so many others that are suffering with far worse illnesses.

So thanks to all of you for your continued prayers and encouragement!!

Officially A Rehab Graduate!!!

 

 After 8 weeks of pulmonary rehab, twice a week for 2 hours each time , I have finished the program.

It consists of weight and stretching exercises ( including .. wait for this.. chair exercises) , walking on a tread mill, and using a nu step machine ( sit down stepper), it also included an education topic every visit. They constantly monitor your oxygen, blood pressure and heart ( via monitor).

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The goal is to strengthen the lungs and muscles to fight back against the breathing issues.

I had a great bunch of “older” people in the program, especially a couple of smart aleck guys, It made time go fast!  Top right is Dan our instructor who someone labeled as “Dan-ielson ( because of an exercise that is similar to wax on wax off  from Karate Kid).  

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I graduated on the same day with one of those guys- Joe, so being who I am I wanted it to be a special day. Joe shared with us a photo of him many years prior on a cruise dancing with show girls, and thats what he set as his goal- to kick up his heels..  So I brought him in a Barbie doll to dance with  and the record album cover with a heel on, along with flashing graduation pin to wear! 

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Part of our routine is to use sticks, it always reminds me of a dance routine so I got every top hats to wear. I included a gift bag for everyone with a finger light ( that represented the pulse ox) some goodies and Sparklers. I also gave them each an old record that I found at the thrift store ( that fit their personality). This one below was for the guy who loves to gamble. 

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 Add in some fake teeth and we had a fun day!!

I can continue to go weekly as a maintenance program, and plan on it so I don’t lose strength.

I was so excited to share with you my progress- I have been able to do more the last few weeks , I have cooked more, was able to do more things around the house, did more activities with the grandkids , and worked longer hours.

…… and then …

BAM, I have regressed the last couple days back to being shaky and weak, struggling with breathing and other symptoms. I am not the least bit happy about this, and hope it is very temporary!!

They say this disease has no set course, how true that is!!!

So what I thought was going to be great news, isn’t the greatest but I wanted to share the graduation news and photos with all of you who have supported me along this journey.

Does the outside reflect the inside?

I wrote this a couple weeks ago and forgot to post.

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My favorite sea shell is a Baby’s Ear. It is the most beautiful delicate, bright white, smooth shell.
It is an unique shell, as the animal lives on the outside instead of the inside of the shell.
The shell is protected by a ugly, slimy coating.It is often found in the debris line of sea garbage, or sometimes along the shore line as the waves uncover the sand.

Having a disease like sarcoidosis is like that shell. People can not tell by looking at you what is really going on in the inside.

I recently made a step I never thought I would, it was a visit to the Secretary of State office to get a handicap parking pass. I have only used it twice, and since I am trying to strengthen my body I don’t plan on using it often… But there are times when it is needed.

The other night the family went down and had supper and ice cream in Grand Haven.
The past week I have really struggled with breathing ( not sure if it is humidity or weaning down on prednisone), but it was a night I needed to use the pass. There is no way I could walk a block or two to get to our location ( and all the spaces near the channel were taken).

I am sure that people looked at 4 healthy looking adults and a cute little 4 year old get out of the car and thought are you kidding me, they are parked in a handicap spot!

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But for me having it meant I could participate in family time, and for that I am thankful!

So remember that the outside does not reflect a person on the inside.
How true that is, can you really tell a person’s heart by looking at them?
Is that smiling friend really waging some kind of inward battle?
Is that beautiful, well dressed person really a happy one?

Like the shell, you need to peel back the outside to find what is inside.
Do we take the time to do that, or are we afraid of what we might find?

1 Samuel 16:7 – “The Lord does not look at the things man looks at. Man looks at the outward appearance, but the Lord looks at the heart.” (NIV)

Pinterest Recipe Experiment

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You have decided today’s the day to bake that special cake you saw on Pinterest that looks so amazing!!

You make the effort to gather all the supplies,
get out all your kitchen tools needed,
you print off the recipe for it,
mix together the ingredients,
spend a long time preparing it from scratch,
and wait for it to bake.

You take your masterpiece out
and let it rest a bit to cool down,
cover it with fluffy frosting,
cut yourself a piece,

and take that first bite ….And SPIT it back out!!…….. What happened?

There is definitely something missing that is crucial to the taste
but not the presentation.

I am that CAKE!!

I have gathered so many ingredients (medications, blood work, biopsy).
Used the tools recommended (test after test),
I have followed multiple doctors plans of diagnosing
I have mixed all those meds in the correct amount in my body,
I have waited for the meds to cure me
and if you look at the final product (me), I don’t look much different on the outside.
I take the time to rest when I can’t go no more,
I use fluff to cover my frustrations and discouraged self.

but like that cake I am missing some crucial ingredients.

What is missing?? I wish the doctors could figure that out!!!

Today was multiple hours of pulmonary tests at the University of Michigan, in search of the reason why I am so short of breath.

After all the tests, we confirmed as before it is not a lung problem, but still have no answers to what is causing the breathing problems.

So in search of the solution:
we are changing ingredients ( weaning off prednisone)

we are using some different tools ( a couple more tests have been ordered/ will go back to U of M on June 11 for a different style cat scan, and a more involved heart echo test).

We are continuing with the Doctors treatment plan
We will continue with the meds given, and follow up with monthly blood tests
We will wait three months before re-evaluating the results
And in the mean time try to just live life as normal as I can.

We are hoping going off Prednisone will help my emotions, let me sleep better (and with good sleep comes more energy), and maybe even get rid of my tremors.

The Sarcoid causes lack of energy, but I will continue pushing the limits to strengthen myself, and continue my Pulmonary Rehab.

And I will continue to wait on The Lord for his timing!

Puzzled, dog walk, and new men in my life!

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I love my husband but I have some new men in my life
Eugene ( but he goes by Joe), Art, and Don.

They like to be around me, I can tell by all the heavy breathing.

I have two hour dates set with them for twice a week, for a couple months

They are my workout buddies, and all old enough to be my father.

They are my new pulmonary rehab buddies!

The rehab was prescribed by my Dr at U of M.

The reason for the rehab:
Physical therapy improves ventilation of the individual experiencing sarcoidosis through the use of breathing exercises, it also focuses on strength and endurance through exercise. By building endurance, the individual increases the ability to work and the resistance to fatigue. They also have n hour of education every week.

Well I can tell you one day of stretching, treadmill, and the sitting stepper did not make it instantly better, my poor legs were shocked and responded by shaking sitting at my desk today.

The start of the program is a 6 minute walk up and down the hospital halls.

I felt like a dog.

I was told to follow the therapist, as the nurse had me on a leash ( to measure oxygen). I also got to wear a heart monitor, much better than a collar!!

My oxygen stayed great, but my heart didnt behave properly.

Due to the heart rate dipping multiple times while walking, I get to wear a heart monitor every time I come ( sometimes I don’t love all the extra attention I seem to get).

I have noticed some strange beats, but I never was that musically gifted!!!

Nothing major has showed up on EKG’s, heart echoes, nuclear stress test and the two day holster test… so now I have given my doctor something more to think about!

I am sure he is thrilled that he took me as a patient! He is looking at the electrical connection possibility, I guess that is fitting for an electricians wife.

Puzzled….
This week has been another rough one, with hard time breathing, zilch / notta/ none in the energy/ strength department, sleepless nights, strained voice, and the face and tongue numbness returning.

I hear over and over again that your breathing shouldn’t be this strained with Sarcoidosis, so I just pray they can find all the other pieces of my puzzle to put me back to normal.

It would be easier if we could see the puzzle box cover, and if Sarcoid pieces followed a set pattern, and if I even knew who has my missing pieces!

All the additional blood work from U of M came back normal, so we will see what comes from my 4 hours of testing at the end of this month in Ann Arbor. I have been on the newest meds for a month now, but don’t seem to notice any difference.

Just thought it was time for an update, thanks for your continued love and prayers.