Friday, September 23, 2011

strong shoulders

I must have them and God must feel that I can shoulder a lot.
I was just told I was being laid off for the 4th Qtr.


I ran a Mile

My lungs hurt my legs could barely make it... it sucked.. in every way.. but I loved it.

Sunday, September 11, 2011

Weigh in for Sept 11th 2011

Starting weight: 244lbs (8-1-11) BMI 31.3 Obese
Last Week  227
Current Weight: 226
Weight Loss -1lbs
Total Loss: -18 lbs
Goal Weight: not entirely sure but sub 210 for sure

Saturday, September 10, 2011

The last few days

I cant tell you what I ate, other than I have been spot on!

But the days are running into each other, the headaches are causing nausea.. the tremors of course have not left..i seem to be fighting off a bad infection of sorts is all I can tell... my body is just on the brink of failing it is doing every thing it can do. I am resting I am  hydrating, I am eating good food.. so I a doing my part.. I just hope I dont fall as I feel this will be an ugly one if it goes.

Thursday, September 8, 2011

Food Blog 9-7-11

Breakfast: Chocolate Cake ( ha ha ha)
Snack: banana
Lunch: sub (small)
Snack: chocolate birthday cake small piece
Dinner: two left over pieces of pizza

Tuesday, September 6, 2011

Food Log 9-6-11

Breakfast: two granola bars (lazy)
Snack: banana
Lunch: turkey and swiss on cranberry bread
Snack: yogurt, banana

Food Log 9-5-11

Breakfast: bagel peanut butter
Lunch: ham rollup, braeburn, string chees
Snack:Chocolate cake
Dinner: ham and scallop potatoes

Monday, September 5, 2011

Weigh in for Sept 4th 2011

Starting weight: 244lbs (8-1-11) BMI 31.3 Obese
Last Week  228
Current Weight: 227
Weight Loss -1lbs
Total Loss: -17 lbs
Goal Weight: not entirely sure but sub 210 for sure

9-4-11 food log

Breakfast: peanut butter bagel
Lunch: cranberry bread turkey sandwich
Snack: banana
Dinner: ham and scallop potatoes

Saturday, September 3, 2011

Food Log 9-3-11

Breakfast: bagel with peanut butter
Snack: Banana
Lunch: Bagel with ham, string cheese, yogurt

Friday, September 2, 2011

Food Log 9-2-11

Breakfast: Peanut butter Bagel
Snack: half of a bagel with honey and one string cheese stick
Lunch: Half a turkey wrap, Yogurt, Banana
Snack: grapes, yogurt

Thursday, September 1, 2011

TIA attack or seizure or ?

But yesterday I spent about an hour or so in the hot sun at work and when I went home I stopped off in the grocery store. when I left the store I could not remember what I drove.... for the life of me I did not remember what I drove. finally it came to bet it took some time. Then on my way home I started getting the nine volt battery feeling in my head and missed my turn off for Sunshine drive..... such a terrible drive home.

Today I was just exhausted. I layed on the couch all day except for the hair cut... had spme more electricity today

Food Log 9-1-11

Breakfast: Peanut butter bagel
Lunch: ham, cheese bagel
Snack: two pieces of bread no butter
Dinner: Omelet

Wednesday, August 31, 2011

Food Log 8-31-11

Breakfast: two Granola Bars (kind of signaled a weak start to my day)
Snack: Apple, String cheese
Lunch: Yogurt, Half of a turkey wrap,grapes, string cheese
Snack: Yogurt, string cheese
Dinner: two brats and buns

Get back up one more time than you fall down.

Weightloss August Ending:

I am very happy for the way the month ended. I could not have asked for a better loss 16 lbs is huge. however it is still embarrassing, if I lost 16 lbs with out exercise you know I had some poison and water weight in me that was unnecessary. But i am over that, I can not dwell on it I must look forward to the success, a motto that my good friend Mike Henze and I share Get back up one more time than you fall down and since we are both big horses we need do are best to stay standing! Forward and Downward on the scale that is.

the battle of the Wolves

An old Native American told his grandson, "My son, there is a battle between two wolves inside us all. One is Evil... It is anger, jealousy, greed, resentment, inferiority, lies, & ego. The other is Good... It is joy, peace, love, hope, humility, kindness, empathy, & truth." The boy thought about it, and asked, "Grandfather, which wolf wins?" The old man quietly replied, "The one you feed."

Tuesday, August 30, 2011

Food Log 8-30-11

Breakfast: Peanut butter bagel
Snack: Almonds
Lunch: two pieces of whole grain toast with Honey, yogurt, grapes
Snack: Yogurt, String Cheese
Dinner: 6 inch Subway italian sub loaded with veggies about 15 chips natural no sugar less than 5 ingredients

A little bit of Sun yesterday..

and all hell broke loose again, fevers, joint pain, headaches (well those have never ceased), seems I have picked up a cold as well somewhere. Trying to keep m spirits high and so far so good. I even passed up all the chocolate and junk food at the store. but could not medicate enough last night to get comfortable... I tried EVERYTHING. A new day a new dawn.

Monday, August 29, 2011

Small Victory

Had another small victory today.

I fit back into a pair of pants that I have not worn since April'ish-may'ish? and they are fairly comfortable!


Breakfast: peanut butter substance like (Jiff) Bagel
Snack: Yogurt, almonds
Lunch: Chicken Wraps, string Cheese
Snack: Yogurt, Almonds
Dinner:2 tacos

Methotrexate and taperville

For now I am done with Methotrexate and I hope to never be on it again, really I am done with medications. I want to be proven why I need them. I am sick of being on drugs and still not feeling well. Of course I want to love and take care of my organs, so unless I really am in such misery joint wise or there is a real chance of organ failure I will most likely question the use of the drug vs the side effects.

Another good note, I have Tapered down to 10 mg on Pred today and will be down to 5 by this weekend. :)
10 today, tomorrow, 7 1/2 on wed, Thursday, and then Friday I will hit 5!!! Alleluia from there it will be on how the medicine and my Adrenal gland allow me to reduce.

Sunday, August 28, 2011

Food Log 8-28-11

Breakfast: Breakfast burrito
No Snack
Lunch: Another Burrito, Yogurt, string cheese, banana,
Snack: Yogurt, Banana
Dinner: Stroganaff again

Weekly weigh in 8-28-11

Starting weight: 244lbs (8-1-11) BMI 31.3 Obese
Current Weight: 228
Weight Loss -4lbs
Total Loss: -16 lbs
Goal Weight: not entirely sure but sub 215 for sure

Did really well every day I challenged a group of close friends to it and that helped me out

Saturday, August 27, 2011

Food Log 8-27-11

Breakfast: 2 pieces of string cheese, half a bagel
Snack: Almonds, Banana
Lunch: Turkey cheese wrap, Yogurt, cheese stick,
Snack: Yogurt, banana

Yesterdays Proactive approach to Tendinitis and Bursitis

I have really been having some really bad Tendinitis of My I.T. band on my right leg and a real sharp acute pain high on my right hip which I believe to be Bursitis. How I am deciding this to be true you might ask? while rotating my leg on an axial plane I can feel and hear an audible snap of what I believe is the I.T. band snapping as it rolls over. So my plan is to stretch, ice, heat, and then strengthen the supporting muscle group so I can get this nipped in the bud. I also have some strengthening sheets from a P.T. that I respect for the these muscle groups.

I also need to add in light core (nothing to strenuous) just something is something and maybe some light arm and chest weights to start building up some upper body strength. It is just baby steps for mental well being if nothing else.

Friday, August 26, 2011

277 Miles for Lupus

If I do this... scratch that, when I do this. I will need to be lean and strong. I can have no excuses to not have built up my body to be that of one that can take this on and be realistic about my chances. I am looking forward to my chances more and more. I am gaining support from a Lupus support group. It is easy to gain support, I know so far having Lupus I need to be able to put it away and keep it away for a period of time. I will trust that my Dr. staff can do this.

Food Log 8-26-11

Breakfast: 2 packets of Kashi Oatmeal
Snack: Green Apple and Almonds
Lunch: Bagel, yogurt, peach
Snack: Yogurt, Banana
Dinner: Beef Stroganoff (this will repeat enough was made for a long time lol)
 small portion

Green Apples

I love them sooooooooooooo much, but I think I can no longer have them. I believe I have just linked them to my Acid Reflux. :(

Granola Recipe

 Makes 18 half-cup servings.

 4 cups organic rolled oats
1 cup organic sunflower seeds
¾ cup organic chopped pecans  
¾ cup organic walnuts
 l½ cup organic all-purpose flour
 1 tsp salt
 1 tsp cinnamon  
½ cup peanut oil
⅓ cup brown sugar  
⅓ cup Ambrosch honey (a local product)
¼ cup maple syrup  
1 tsp vanilla extract
½ tsp almond extract  Preheat oven to 325 degrees.

 Mix all dry ingredients together in a large mixing bowl. Set aside.  In a medium saucepan, add all liquids except extracts, heat on medium until all sugars are dissolved and mixture begins to boil. Remove from heat and add extracts and pour over dry ingredients. Mix well and spread onto a large cookie sheet. Bake for approximately 25 minutes, mixing once during baking. 330 calories, 18g fat, 7g protein, 35g carbohydrate, 3g fiber, 170mg sodium.

Thursday, August 25, 2011

Food Rule #4

Do not get your Fuel from the same place you get your cars fuel


Today i feel somewhat Alive!

Food Log 8-25-11

Breakfast: Breakfast Burrito (one egg, black beans, avocado, onion whole wheat tortilla) good power breakfast.
Snack: grapes and a piece of string cheese
Lunch: Big can of chunk Chicken and bowl of broccoli, cauliflower and green pepper
Snack: blueberries, yogurt, flaxseed  and a piece of string cheese ( so need to get to the coop so I can get some fresh peanut butter for this)

Wednesday, August 24, 2011

Food Rule #3

Avoid food Products Containing ingredients that no ordinary human would keep in the pantry.

Food log 8-24-11

Breakfast: cottage cheese and and avocado
Snack::Yogurt, banana
Lunch: Bagel w/honey, yogurt, peach (turns out I am not a fan of peaches)
Snack: green apple and almonds
Dinner: two pieces of frozen pizza LOL

Tuesday, August 23, 2011

Another day another Fever

Woke my wife up this morning with a fever, I snugged up close to her and made her sweat.. checked my temp and it was in the 100's my joints were on fire and the headache was in full force. But I decided to go to work today. I missed 2 1/2 days last week and I can not keep doing that and stay employed at the same time.

I am trying to keep my attention towards trail running and the things that surround it. I have been notifying my friends and possible crew and people that will accompany me on my journey. I have pulled out trail runner mag that i had the SHT trail book. etc... just get the positive vibes flowing as much as I can. ...

Food Log 8-23-11

Breakfast: two packages of Kashi go lean oatmeal
Snack: yogurt and banana
Lunch: Bagel w/ honey, Peach and Yogurt
Snack: green apple, Almonds
Dinner: Subway 6 inch black forest ham loaded with veggies!, Potato Chips (natural no sugar etc less than five ingredients)
 small square of banana bread cake for MTX night.

Food Rule #2

Don't eat anything your grandmother wouldn't recognize as food

Monday, August 22, 2011

277 Miles Long as far as I can tell

Big Plans a brewing in my Brain

I have big plans brewing for a run for raising money for Lupus, I plan on inviting friends and family to join along for the adventure and raising money, selling shirts. I am guessing if I can get healthy by Jan of 2012 and stay healthy through 2013 I would be looking at middle of Sept 2013 as my time frame and it would be 277 miles long and roughly 7-10 days...  but epic for me and for people with Lupus.

Michael Pollan Food Rule #1

Eat Food, Most Plants, Not too much.

Food Log 8-22-11

Breakfast: Cinnamon Raisin Bagel and a Banana
Snack: Yogurt, banana
Lunch: Bagel with Honey, Yogurt, Peach
Snack: Green apple, Almonds
Dinner:Chicken Kabobs and cut up veggie tray.

Sunday, August 21, 2011

Diet vs. Lifestyle

Getting back to what made me slim and trim last year. Looking at food as food using Michael Polan as my Reference. So many truths in his books it is scary on how America has become and how easy it is for us to be that way. It is no wonder we live in a country of Diabetes and Heart Disease, obviously it played no role in my Lupus as I was diagnosed last year, but I bet the unhealthy eating I turned to did not help matters easily either. I will start to write down some of his "Food Rules" on my blog.

Daily food Log 8-21-11

Breakfast: 2 packages of Kashi go lean Oatmeal
Lunch: Grapes, Chicken, Yogurt
Snack: Green apple, Almonds
Dinner: kabobs and a Salad

Next Taper on Pred

Well today I tapered down to 17 1/2 this is the lowest I have ever made it, I will be here until Wednesday and then down to fifteen.. lets hope I can push!!!

Weekly Weigh in 8-21-11

Starting weight: 244lbs (8-1-11) BMI 31.3 Obese
Current Weight: 232 BMI 29.8 Overweight
Weight Loss -2lbs
Total Loss: -12 lbs
Goal Weight: not entirely sure but sub 215 for sure

Still need to incorporate more veggies as snacks and sides with dinner plus water otherwise happy with progress.

Saturday, August 20, 2011


I do not remember the last time I did not have a headache and one that did not cause nausea... :(

So bad they brought me to tears and I went home from work early today..

food blog 8-20-11

Breakfast: 1 piece of string cheese, 2 eggo blueberry waffles with honey / no butter
Snack: Almonds, Banana
Lunch: Bagel with honey, yogurt, yellow nectarine
Snack: yogurt, almonds
Dinner: Hamburger with a Talme bun!

Friday, August 19, 2011

A little bit of Sun

And the Flood gates of Shit flows in!!!

Do you ever have a feeling you are part of a bigger Picture

I have this strange sense that my life is playing out and I am starting to maybe see the plan. (or maybe it is just me being overly hopeful) LOL. I am hoping that god made me Obese at one point to teach me the painful leassons of loosing weight, exercise, the joy of running and most importantly the ability to deal with the struggles of Ultra running. Next he gave me Lupus and the strengths of Ultra running are coming in to play to help get me through this and the lessons learned in nutrition will get me through the prednisone gain. Once I get through this I believe my mission is to take any healthy time I can to raise money through my running for Lupus.

Maybe this is just a hopeful vision but it is one that I see.

Food Log 8-19-11

Breakfast: Apple, yogurt, string cheese
Snack: almonds
Lunch: Bagel, banana, yogurt
Snack: yellow nectarine, yogurt
Dinner: Kabobs, Salad

Finally some good news

I got a call from my Rheumatologist that my hip X-Ray was good, so I am assuming he means no signs of avascular Necrosis. He wants to schedule an appointment for Thursday to got through a set of movements in his office before we schedule an MRI to make sure we have the right area being looked at.

Thursday, August 18, 2011

Food Log 8-18-11

Breakfast: two packages of maple oatmeal
Snack: green apple and a piece of string cheese
Lunch: bagel with honey and some green grapes
Snack:Almonds,yogurt with flxseed
Dinner:hamburger no bun, yogurt

i was going to have peanut butter on the bagel but my wife's peanut butter is sugar that has a peanut butter flavor, I need to get to the co-op and get fresh ground peanut butter again.

Wednesday, August 17, 2011

My god

Whomever stole all of my spoons, please bring them back. I am wiped

Good Chat

Had a good Chat with a past class mate yesterday on facebook. Her mother has RA and SLE. This class mate has RA and is starting to show some signs of SLE as well. To this point she has ignored the fact that she has RA and possibly could have SLE figuring if she pretended she did not have it she would not have it. I think she is blessed with a great Fiance that has encouraged her to seek the proper care and maybe just maybe get it under control before it really appears. I gave her some examples of why she must do that and her mom should be all the reasons why. Not to mention she is a female in her prime years of disease activity, family history, and is of island ethnicity so will be more prone to the SLE activity to begin with. I hope she does not have it but if she does I think she already has a great support staff in place and a fiance who is madly in love with her, which is all she needs to kick it.


Breakfast: two granola bars
Snack: Banana
Lunch: turkey wrap, Banana, yogurt
Snack: yogurt, banana
Dinner: Not sure? maybe Subs..

Tuesday, August 16, 2011

Been a day of

pain in joints, now back ringing in my ears, neuropathy, pretty soon i can tell tears... how sad these days can be sometimes...

I wish I could blink and make these medical bills go away and start this year over.

food diary 8-16-11

probably my worst day yet.. as far as I did not eat well.

Breakfast: blueberry pie and coolwhip
snack:I think I slept??
Lunch: a bowl of pork
Snack: string cheese
Dinner: no idea yet, most likely frozen pizza
Ice cream as a treat with my Chemo meds

woke up today

and it was easier just to stay laying down, the fire that was in my hip was still there, kind of like a hot sword shoved through it. as well rest of joints kicked in, fever today. headaches. am i repetitive if i say tremors?



Name a joint location that does not hurt today :(

Monday, August 15, 2011

hip, groin

I have a pain that comes and goes on the hip, the groin and sometimes the back of the hip... not always the same spot not always hurting.. but it is debilitating when it is. today is one of those day I can get in front of pain. I would call it a 9 1/2 tonight, I have taken enough pain killers today and tonight and i am just in pain, pain pain, the headache is screaming the shoulder, the knee... cane is in full effect!!!!

food Diary 8-15-11

Breakfast: string cheese, blueberry muffin
Snack: muffin
Lunch: Meatloaf
Snack: Granola bar
Dinner: pulled pork

Oh how I miss running through this stuff!

headaches and nausea

when did they become permanently linked and 7 days a week?

day 4065 (or so it seems like it)

That I dont feel well.

Waiting for a call back from Neurology now on yesterdays vision problems and to talk about my hands and why i can not lift them from time to time as well as why it closed on me?

Sunday, August 14, 2011

I dont even know how to describe it...

not once but twice my wash machine flooded part of my finished lower level this weekend.. I cant handle any more am about to crack and I certainly can not afford this wash machine on thursday. this is shit!!! Fucking SHit!!!

Food Journal 8-14-11

Breakfast: blueberry pie and whipped topping
Snack: String Cheese
Lunch: Pork roast and a Granola bar
Snack: Banana and Almonds
Dinner: Meat Loaf (thanks Kris) and Potatoes with Cottage cheese instead of butter and salt

This Sucks

I hurt!

and it is getting harder and harder to operate like this day in and day out. Sighh

PM Report same as AM, Pain, Pain Pain, arthritic hands, knee and hip and I have most certainly taken pain pills, headache, sore all over really. Also had bad vision problems today for about 5 minutes. I saw bold letters on all of the long letters like l, t, k, etc. and the rest where kind of faded.... really??? wth???

daily motivation/ photos from Superior 100 Mile

weekly weigh in 8 -14-11

Starting weight: 244lbs (8-1-11)
Current Weight: 234
Weight Loss -1lbs
Total Loss: -10 lbs
Goal Weight: not entirely sure but sub 215 for sure

Really happy with a 1lb weight loss, that is a good healthy weight loss, I consider that to be fat not water. any where from 1-3 is a good reduction. any more is just not normal or right. here is to another  1 lb week or atleast not a 3 lb gain.. : )

back in that place

Where I dont want to be online again, my joints hurt everywhere, headaches, neck ache etc... just dont feel positive enough to be around people...

Saturday, August 13, 2011


what did I do??

Wash Machine over flows on to our lower level carpet... like I need that.... ughhh.. so sad right now.. I am really reaching my limits in life of what I can shoulder.

Talked to my rheum today which was my Highlight he was helping pick out a new PCP on a Saturday, how many Dr's that is right, he has called me on the 4th of July and now on a Saturday.. does anybody have a better Dr. I think not! However when talking about some of my new symptoms, he really felt I need to be back in the hands of Neurology as they seemed outside the realm of Lupus and even Lupus CNS... Really... see above about shoulders only being so strong.  He also wants to get me into an Mri for my Hip to remove any doubts of other problems he wasmost concerned about avascular Necrosis since I have Lupus. but I think we are just making sure there is no ligament, bursitis or hip joint problems and if not then we have Lupus there as well........  I am in so much Pain right now, pain killers are not touching it, hands are burning... tremors. headache etc...

Bastard Child

That is what I am naming today's headache and nausea, and I am only 52 minutes into my work day. Oh happy day! freezing cold...

Food Log 8-13-11

Breakfast: Hardee's loaded omelet Biscuit (morning breakfast meeting)
Lunch: turkey roll up, yogurt, almonds, banana
Snack: yogurt, Banana
Dinner: pork, potatoes

Friday, August 12, 2011

Food Log 8-12-11

Breakfast: Blueberry Pie no whipped topping
Snack: Banana
Lunch: pizza and I will only have two slices if they are cut in pie and four if they are cut in squares.
Snack: string cheese:
Dinner: Meat Loaf, corn and more Pie with Whipped topping :)

building a little mental strength

Decided to wear my 100 Mile Finshers Jacket today, I have not worn that since maybe January , I have not felt worthy of wearing it for some reason but I am wearing it today and wearing it proudly, as I have earned.

Thursday, August 11, 2011

fantastic day

Today my sister Kris drove up from Madison to hang out, catch up and just listen to some cool music. It really was a great day, on top of all of it she even made a fresh blueberry pie and dinner of meat loaf and all the proper sides. My family is really good to me, I have been blessed for sure!!!!

I cherish these days!!!!

food log 8-11-11

breakfast: cottage cheese and avocado
snack: granola bar
Lunch: jimmy Johns veggie sub chips

Dinner: meat loaf corn on the cob ( no butter or salt) homemade blueberry pie with some whipped topping

next taper level

well, this morning I tapered to 25MG, wish me luck, will be here until Sunday and then taper again on Monday.

fitness goal

walking by October, stretch goal to be walking by September. Running by November if none of this happens, I am ok with that as well. I just would like to think that I would be able to walk this year for a little fitness. I sure wish i enjoyed swimming..

Wednesday, August 10, 2011

First time in my life

I am not hungry....

Nice try Lupus but I am not going to allow you this.

Here are what my plans are

Chinese Proverb

The man who removes a mountain begins by carrying away small stones.

food log 8-10-11

Breakfast: 1 cup cottage cheese half of an Avocado
Snack: almonds, string cheese
Lunch: turkey roll up, banana, yogurt
Snack: almonds, banana
Dinner: chicken breast, cottage cheese, cherries

Tuesday, August 9, 2011

I am just so fed up with it all

My dr that I fired yesterday had his nurse call me today and said we did send a prescription over to your pharmacy today, (remember i said the word prescription). So I go to the pharmacy to pick up the Lunesta. I go to pick it up and the pharmacist says he prescribed you 10 pills and that comes to 50 dollars, 10  pills ? what type of prescription is that???? then he said yeah i am not sure why he did that because he could have ordered you a lot more and it would have still been 50 dollars. I told the pharmacist to put them back and I will just go home and over dose on over the counter meds...  FUCK YOU DR THAT I FIRED...

Time to repeat last nights routine to sleep.

I get a lot worse and more power meds than sleeping pills in far larger quantities tha 30 for only 10 dollars... sigghhhh.

TIme to step back

And refocus my life. I spend to much time on social media (laughing as I type this on a blog). I am going to take a week maybe two. and recollect my thoughts I have met a lot of great friends and have a lot of fun, have been given a ton of good advice and encouragement.... I can not even begin to name all the names... But Sarah ahs been like a private care provider to me, Keely, Vickie, Carrie, Jill Kennedy, Barbara always insightful, Robert Reinhart, etc.... trust me I could go 20-30 more names with out even thinking... but I need me time right now. I am starting to have Neuro issues, my brain is not is not centered I should not be in coversatins that require emotional responces as i will probably not understand and either hurt them throu being blunt or miss understood...

I am scared right now

So many things going wrong neuro... Sigh...

Food Journal 8-9-11

Breakfast: granola
Snack: Yellow Nectarine
Lunch: turkey wrap, yogurt, grapes
Snack, Banana, Almonds
Dinner: 6 in Sub from Subway healthy menu no dressing.
 and since it is Methotrexate night I will get some Ben Jerry's Super chunk fudge Ice cream


what it took for me to sleep.

I was also in a lot of joint pain do I took 2 Vicodin,, 1 2mg lorazopram, 2 benedryl, 1 flexeril and I took two good hits of marijuana. a bit overly medicated. but if my Former Dr. was not willing to help me well. then I needed to do it my self for a few nights. I need sleep.

Probably the most effective part of this whole grouping is the 2Mg of Lorazopram.

Monday, August 8, 2011


Today I chose to fire my Primary care Dr. I called in a desperate need of assistance with sleep. as the 7 readers of my blog know, I do not sleep well and have tried every avenue, so with a plead today I received no response, fired. So now the journey begins to find a new primary care physician and start a relationship as well as a sprts medicine dr. as well since my other dr was also my sports medicine dr. I went on online and looked at the dr.'s obviously you can not choose that way and since I completely trust my Rheum I am going to allow him to help me choose my next primary. sounds reasonable ???

But for tonight I need to figure out how to sleep, I am in desperation of it. I am so pissed that He did not call me back!!


I called my Primary care Dr. today and requested prescription sleep medication. I explained to the nurse that I have tried Ambien, it did not work, I try Benedryl very little effectiveness, i have tried flexeril, I am not napping, I am not consuming caffeine at night or processed sugars, I am not doing things that elevate my heart rate etc.. but yet I can not not sleep 2 o'clock rolls around I am still awake. I need more sleep than this. If my Dr. does not prescribe me something today I will fire him and find another one, not all that impressed with him anyways. Plus I will cancel my appointment with him next Thursday in sports medicine.

Easier, more pleasant I dont know???

I just received a note from a casual friend from high school saying looked like I was doing good and how was I, I know that she was sincere as she was always a very sincere and honest person that is what made her who she was. but she had asked me on face book very casually and I figured if she had not seen all of my posts about my struggles with Lupus well then I did not want to be negative. SO I replied back just asking how her father was doing and said she looked like she was doing well. I did not bring up Lupus, as i did not want to be Negative and be a buzz kill, I feel like I am a buzz kill.

Food log 8-8-11

Breakfast: 2 eggs and one piece of string cheese
Snack: small handful almonds and Banana
Turkey and cheese wrap, yogurt, grapes
Snack, banana, almonds
Dinner:Two slices of Home run Pizza and some vegetables

another night of no sleep

2:30 came and went last night and I was still awake. I need to get to the bottom of this. However I did read some good info and might cancel my appointment with my PCP for next thursday, I think I can work through this pain in my hip maybe not by next thursday but if I stick to it I can by the end of the month I bet. If I want this bad enough I should be able to do this, if it does not cure by me than I chalk it up to Lupus, I see no reason to see my PCP for my hip pain anymore unless it starts to resonate further and more consistent in the groin as well. I am going to seek out and destroy the non Lupus things, and let my Rheum and Neuro handle the rest they are both more than competent, i need to get a note book again to write down that way I can write it down, any possible triggers and move on..

Sunday, August 7, 2011

another day of sun and heat...

another day of hell in tremorville and feverland..... :(

food log 8-7-11

breakfast: yogurt, string cheese and granola
Lunch: ham and cheese wrap, string cheese, almonds (handful)
Snack: Yogurt and a yellow nectarine
Dinner: will be meatloaf and left over potatoes again

I know that I am a bit repetitive right now, but right now I need easy and consistent. Plus I need the yogurt for my stomach; it needs as much help as it can get.

So here goes nothing or everything...

I start tapering Prednisone again today, 27 1/2 today and the following three days same time I am tapering off Methotrexate. My Rheumatologist is trying to get me down to just cellcept, I certainly hope he can but I have my doubts on both meds be eliminated completely. If I were a betting man, I will get down to about 15mg of pred and start having problems (really right around 20mg) but I am going to really tough it out. and I also bet I will be back up to 25 mg of MTX in another month or two as well as the 2000 mg of cellcept. Just my predictions.

Weekly weigh in 8-7-11

Starting weight: 244lbs (8-1-11)
Current Weight: 235
Weight Loss 9 lbs
Goal Weight: not entirely sure but sub 215 for sure

Things I need to improve on! More WATER I need to get close to 64 ounces a day and more veggies!

obviously there was a lot of bloat and poison in me that left the fist week, i fully expect 1-2 lbs a week and it to be very difficult from here on out actually as i am about to try and taper off some drugs and my body is going to get stressed. I am willing to bet it will be almost impossible some weeks if not weeks in a row. but as long as i can at least maintain the same on those i will be happy.

But here is to the poison and bloat out of my system.!!!! YAY!!!!

Saturday, August 6, 2011

I used to love sun

Man, I just do not understand it. Sun has turned into such a cruel beast. I spent maybe 15 minutes (with 100spf) and a hat out side this morning walking around. I have had increased neuro issues this morning ever since. I hope nice we get Lupus put away that this goes away as well. This is nasty and as I type this my foot is going numb... oh well, staying positive. I will contribute that too two different items... (for now, it change and my theory could be wrong) the addition of Welbutrin to my anti depressants and changing my diet back to better healthy diet. I am starting to feel better about myself even though I am having issues. Let's hope this can continue forward!!!

My wife is deserving of a husband that is happy or at least not constantly angry at life.

food log 8-6-11

breakfast: yogurt, banana and piece of sting cheese
snack: nectarine
lunch: ham and cheese roll up, yogurt, banana (trying to repair this stomach)
snack: yogurt string cheese
Dinner: will be out but I will order a light salad or fish and even bring home half.

Friday, August 5, 2011

Food Log 8-5-11

Breakfast: banana, yogurt, string cheese, and a few almonds
lunch: 1 ham and cheese wrap, grapes, and a yogurt
Snack: yogurt and a Nectarine.
Dinner: Meatloaf and potato.

5 minutes of feel good

Well, not physically but mentally right now I am strong, that could change at any moment but I have a renewed since of fight in me. I have even mentally put Arrowhead 135 back on my list, it actually is a possibility as far as lupus goes, Other than the fatigue factor. If I am not flaring I will be bundled up for the most part so i will not have the sun glaring on me pushing my immune system, I would definitely have to take care of myself on this. I think the training would lend it self as well, I would not have to peak until winter so I could keep my running a bit more light in the summer o early morning and start picking it up in the fall as the sun starts dropping earlier. Let's hope this 5 minutes last ten minutes at least.

What does it take to have a normal night

Have some numbness in legs again last night. vision problems and could not get to sleep because the ringing in my ears was too loud for too long... sigh. : (

Thursday, August 4, 2011

Rant on drug studies...

Bogus study

The above study is one of the studies that i am going to point out in this post that is one of the many reasons we are screwed up in health care. We are trying to fix people that really are not needing the treatment all so companies can increase some market share get more money for investors... blah blah blah blah...

The exlusions listed to the study are basically what makes you and active lupus patient... so basically they are looking for patients that have a positive ANA and a sore finger... pretty much does not have lupus.

Ok next one The BIG HYPE Benlysta ...OMG THERE IS A CURE>>>>> LOL<<<<< not.. Calm down people once again they did not even test people that were most sick with the disease, it did not get rid of it on the few it worked on, It DID NOT work on African Americans and they typically have the worst disease activity.. in white people it worked in 1 out of 11 patients with mild lupus and costs over 30,000 a year... yay big pharm you won again..

the fake savior

Food Journal 8-4-11

Breakfast: Sausage egg biscuit
Lunch: two Ham and Cheese wraps
Snack: Yogurt and handful of bing cherries
Dinner:  Meatloaf and potatoes ( I was really good on portion size, only one slice of meatloaf Pro3 ounces, and 3/4 cup maybe of mashed potatoes not even a tablespoon of butter) had some watermelon as well.

Wednesday, August 3, 2011

compliments of pain

thanks to a sore stomach and esophagus almost feels raw or burnt from medication, I choose not to take any pain pills today and ride it out in pain... .. if it is not one thing it is the other... plus side...

6 minutes and I am off!!!
bring on Thursday!

The great thing about Methotrexate on Tuesday

Is the Headache that slowly builds on Wednesday and progresses into Thursday... nausea is always fun as well.

Because having Lupus does not suck enough.

Food journal 8-3-11

Breakfast: Big can of chicken and two slices of cheese
Snack: yogurt, even though I took cellcept, my stomach needs this
Lunch: turkey cheddar wrap, yogurt, banana
Snack: string cheese, apple
Dinner: 2 burgers without buns (only because we did not have them) maybe some watermelon closer to bed time

Pill count....


Some things are probably best not counted... I just counted my weekly pills taken (not counting sleep aid or pain pills) I believe I am at 180 pills right now... and yet, I am in pain... I can only laugh and then sigh.

so many joints

so many pains... today will be a day where it hurts to push on the gas pedal for sure.

thinking of the kenny wayne sheppard song living life by the drop... change it to drug.

Tuesday, August 2, 2011

trying to pin the tail on the donkey

a lot of pain again recently more than usual or atleast more extreme than usual. my right hip seems to burn from both out side and in the groin, but not all the time and not both places at the same time either. also knee so bad that i just would rather have them remove my leg at the hip and be an amputee, i really think it would be of less pain in the long run at this point. I am getting really bad tendonitis in the IT band and I am not doing shit to cause it!!!  My ankles and and knee some times hurt so bad that it hurts to push on the gas pedal. So what is the change????? I do not know for a fact. I do know that I have begun tapering my Methotrexate down last week and again this evening, so maybe that is the thing.... dont know!?

I hope to find my trigger or at least have it magically disappear, I am taking to many pain pills just to survive and still be in pain. :(

Food Journal 8-2-11

Breakfast: 2 eggs s lices of cheese
Snack: (cellcept gets in the way of this)
Lunch: tukey cheddar wrap, banana, yogurt
Snack: apple, string cheese
Dinner:6 inch sub from subway and a small amount of ice cream as a treat for chemo pills

I need to do better on WATER... not crystal light but water!!!

victories and defeats

Well, it is early in the week and a lot can happen between now and Sunday, but I did have a considerable amount of weightloss (purely excess water weight) but atleast I am not carrying that around. That can change everyday though so I am not overly excited other than I have defeated the strong powers of Prednisone for atleast 2 days.LOL

Defeat: I am so sore I can barely stand.... I am going to have to load up so heavy today on meds that I wont know my name...:(

I am hoping for some relief this Thursday from acupunture!

Monday, August 1, 2011

Food Journal 8-1-11

Wow, how did it get to be August already. :(

Breakfast: Bagel
no morning snack
Lunch: can of chicken, 1 piece string cheese, and a yogurt
Snack: Apple
Dinner: Hamburger and Fruit

dear self

stay strong today,

Yesterday turned into a day of a lot of pain. pain killers and even got a little herbal buzz last night... nothing tackled it. this morning, i start off in the place i ended the day, just with less sleep.

I have two options today, be in a lot of pain, or take enough painkillers that my brain is numb and i am non functional, either way really i will not be very useful.

July 31 food Journal

Granola for breakfast
Can of Chicken for lunch
(I had a snack healthy one just can not remember)
missed afternoon snack
Dinner I had one burger with bun and a lot of cantelope
Resisted snacking (was helped by the no food for two hours after cellcept rule)

Probably a little light on calories but all in all not bad.

late nights

reminds of the song Diamonds by Rob Thomas, how are you supposed to heal if you can not even sleep?

Sunday, July 31, 2011

Man, I am trying to play this hand dealt today

But it is not Aces over Kings that is for sure.....

I think I might be jack high and and I am not playing Euchre.

Would like to know the triggers.

I am so curious to triggers in my body
I woke this morning relatively pain free for me. Had all my typical tremors.. but nothing new there.

As the morning progressed my Hip started to hurt... then my knee, then my shoulder, now I have a foot that is going dead.

I wonder if it is the heat of the day 90 degrees again and I just can not handle it? I wonder, I really do. I went from I dont think I am going to take a pain killer to, I am going to take a half , to I just took another half and really am ready to take another if needed. Get that cane back out as well.

First Weigh in 7-31-11 If your fat and you know it clap your hands...

Well here are the facts.

244lbs that is the heaviest I have been in years.

First goal is for these pants size 38 fit with out pulling on the buttons. (I want to get back to 34's that I was wearing last summer) but baby steps. Sundays will weigh in day.

Food Log 7-30-11

Granola for Breakfast
Apple for Snack
Turkey and cheddar wrap, and some cherries (the ones with pits)
Watermelon and a slice of cheese
 too much pizza and some more melon for dinner
4 beers around campfire

Saturday, July 30, 2011

Electricity Storms and tremors galore

Hands and feet are on fire, electiricity, and tremors are rampant today, hip and knee starting to flare up in pain..

Breath Deep....and exhale.... Breath Deep....and exhale, find some strength...not every day is going to be like this.

When did this happen?

When did I say; well I guess since I am no longer running, yoga, etc. that I no longer need to have the proper nutrition both in calories consumed and type of calories consumed?

I know, everyone keeps saying, it is the Prednisone, you have no control over this. BS. I most certainly do, I just dont know why I gave up on that. How pathetic am I.

This morning I saw a towel hanging over the shower curtain, and there was one long thread hanging about a foot down.... pretty much sums it up!

I am going to start posting my daily eating, just to make my self accountable or at least publicly embarrassed by what I consume. Wish me luck towards the good side!

Friday, July 29, 2011

My Life

So, I have fallen twice in the last two days, and I called my neuro today to let them know that I fell. They want to rule out a medicine I am on so they are taking my off Primidone and putting me on Topamax for seizures instead.

The Nurse says to me this does have some side effects... what are they? Well it typically cause burning, tingling possibly burning and memory loss..

See the funny part about that is, i already have that, which she (Karen) and I love Karen she is a great Nurse takes very good care of me. She said yes, but sometimes as the dose gets higher we can work through it... I said if not, what do we do, she said well; we will probably increase our Neurontin, (in my head I am saying WTF, I am already taking 6 of those a day) REALLY?

Lupus You can KISS MY ASS!


That seems to be the plan for this weekend, Renee and I (her awesome idea) are going to set up the tent in the back yard and camp out this Saturday night, it is both something we have enjoyed doing in the past but our work schedules do not allow it. so she said lets camp in the back yard. I have a fire pit already there so if the weather cooperates we can have a fire as well. Looking forward to it. Last night we went and caught a Sunset on the Mississippi River.


Getting closer to seeing one, but one thing at a time, I need to fix the legs going numb and falling down, or atleast address it. I am now able to express my feelings openly to my wife, and I am very thankful for that. Lupus and Depression are both very ugly and are going hand in hand.

As I sit and type this my right leg is going numb on me again., hence why I need to address this first.

Thursday, July 28, 2011

Another Fall

Just got up off the couch and started walking, another fall; legs went numb.

thanks to my wife

i am reminded lupus is in me, but it does not own me.


Today I continue to renew that I am worth the struggles and pain, to lean on friends when needed and to take some time for me. Even though my problems are large and they are very real, they are not bigger than who I am.

Wednesday, July 27, 2011


"Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.'"

I don't get it.

I am so much stronger than all of this. What is it about this that I am not able to grasp. Just Pisses me off. When I first was Diagnosed I was what ever.. who Fucking cares, I went so far as to tell "Lupus I'm Huckleberry!" Somewhere it made me it's bitch.

Stength, Strength...
I am not an army of one anymore, I am going to recruit my troops. Who cares if there is no known finish line.

I have always believed that a person should not make changes in bad times because there judgments are blurry, Make changes when you are on top that way you can clearly see. How ever I need to make one change while I am down. More too come.....

good chat

Had a really good friend over for a few beers a cigar and a chat last night and my wife even made us dinner. We talked a bit about my current situation and the the world what trouble the USA is in because of every part feels they need to win and there is no compromise. This guy was my manager in my best years and i would say that my best years where definitely linked directly to his management style. Take care of the customer and the customer will allow us a fair profit. His negotiating skills were always superior, but he had 5 kids, so he equated it to dealing with them..LOL ANy way good talk, a couple of good beers, a great meal.

I was really getting tired by the time he left and my body was reving up for a bad night. Joints flared terribly. So I brought the laptop to bed and chatted on Facebook next to my wife sleeping, I normally go down to the couch, but it is easier to set it down and go to bed when the ability presents itself. This morning the joint flare is continuing, but I still feel some improvement.. So I think for now I am in the right direction.

Sun, unfortunately my job requires to be in the sun and the sun and I are no longer friends by any means so I might have to consider options of what i need to do next.

Another note on last nights discussion with Dave, heis going to bring two of his boys over and start in on some of my projects to help me out. I know that I will most likely ball like a baby when i see these people so generously giving of themselves.  

I hope that I am able to get some sleep tonight, it is not productive for me to be with out.

Tuesday, July 26, 2011

I was so close

I was having a moderate day of lupus, and now BANG!!

I am getting the electric pulses in my head, and i have noticed that I have dropped a foot a few times while walking... WTF is that??? Seizures??? I think they upping my seizure meds as well, because I clearly do not have enough meds. When will these tears end.

Collective Journey

In all, learning is change, becoming slightly or profoundly different. But learningis welcome when it affirms a continuing sense of self. 

I need to stop wanting to read about things like the Buddha and other spiritual leaders, and start using my library card and doing. If anybody has some good emotional and spiritual building books let me know. I need to start stuffing myself with more positives.

Monday, July 25, 2011

not a good night by ny means

I am super dizzy and cane dependent tonight, I wouldn't even trust myself driving right now.

applied for one of these today

I am blessed

with friends, not sure how it happened. I never really felt I was much of a returner if that makes sense. I have always enjoyed the company of people but never felt like I brought something to the friendship. I am learning that I actually might have brought something. I am humbled that these friends are stepping out and wanting to help me by getting my houses exterior cleaned up. THis is all stuff that I do each summer and fall but now, I am too shakey to be on a ladder to weak to spray a power sprayer all I can offer back is gratitude.

the thought process of selling the house

I am really having a mental battle with this sale. I know that it is material and that is all. It makes me sad that I was not able to provide as I always thought I could. I don't have the ability to hunker down and make this better. It takes all my effort to take care of me right now and that means not being able to take care of my property that my wife so loves. I know that she does not see me as a failure, but I do.

I think often about pushing my boundaries and see how much i can get out of the body with Lupus I might try and start pushing through the fatigue and pain and see who is on the other side, maybe the hurt will be no different, i tend to lean towards the higher tolerance threshold

Stay tuned....

Sunday, July 24, 2011

So here is my Dilema

I have a lot of stuff that needs to be done at my house (outside work), I am  not able to do this stuff right now and quite honestly this house needs to go. It is too big and requires to much maintenence. The dilemma comes in this form.

I can no longer do this work myself, (even though I do not look fucking sick)  and currently I can not afford it to be done; my choices are meds or house work.  THe double edge sword comes from we both agree we need to sell the house and fins something smaller, less maintenance  etc.. and can always go larger again... or stay small and travel once my health gets turned around. BUT, can not sell the house in this condition. I could use about6-8 days of good old fashion Ger er done woek, but I don't have the ability to knock out 30 minute sessions any more with out repercussion/. did I mention I am no good at asking for this or even accepting favors... these are favors I feel I can not repay. : ( So Fucking Sad. I know that this blog has mostly female followers so you will probably not understand the male side of this. THat was even brought up at my last Dr.s visit that males suffer worse depression than women with Lupus.  any way that is my ramblings for tonight. I think. If I try to do this work I will fail, I know it. FUCK LUPUS


in my searching as of late, the one thing that keeps coming to me is I really have no idea of who I am. I currently have nothing that defines me. On an overall I am not happy with what I do for a living. not so much that I sell boats, but that I am a slave to working weekends I am not prepared to give up the rest of my life with family and friends on the weekend. But if I asked myself what my dream job is, I could not answer it, i could say well i think this might be cool or that might be, but I have no Burning Desire, the flame is out.

Does not sound like a post coming from a guy who ends up buying a (sports car, harley davidson) or other, I find myself more of the Eat Pray love, pack all my belongings, take the equity in the house and go.... go experience life.. if i run out of money in italy, get a job and see what happens next. Maybe I can be te only guy with Lupus that climbs Mount everest

3 days of ok

I went to my parents house for the weekend since our well had to be shocked, also my boss sent me home to get some rest. It was nice to spend some time with my parents even though so many times I just cringe...LOL  My dad and i spent some time in the hot tub, and i spent a few times by myself,. relaxing and put a full soak on the body, it was quite healing. I need to figure out how to get one of these, I was able to keep myself in moderation wehn it came alcohol, which was nice but food, i tended to over do...

I had a fall this morning when I went to church with my parents, but i was able to catch myself so no harm. Also I i had a demoraling moment my hands aeem to get more and more tremory and i was not able to cut the food on my plate last night so my wife did it for me, I felt like a 2 year old getting there food cut up. and again this afternoon when trying to cut some cheese off a block.. my hands was shaking a good 2 inches... :( really having a hard time typing anymore as well to many missed keys or double key entries.

Friday, July 22, 2011

The Joys of Lupus

So I am sitting here minding my own business... (by the way that took like 2 minutes because of tremors and hitting wrong keys)

I feel some pain in my hands,... 5 minutes later, i start cramping... then my feet start burning... thenn my knee feels like junk... then my hips burn...hands start cramping cant type any more.. sorry.

Morning meeting

Met with my boss this morning to let him know that I had a bad day yesterday and was told of treatments that I can not afford and diagnosis that cant be made and just going forward as is right now. He told me to finish what i need to get finished and take the rest of the day and saturday as well as sunday off to rest. That was very nice. I let him know if there was anything I could do I can and certainly would log in from home and handle from there.

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

Thursday, July 21, 2011

dr appointment

So today I had my dr appointment, i was told about my biog three corner stones (never mind the late stage Lyme disease).

1. Lupus
2. Lupus CNS (as if Lupus is not bad enough, fuck)
3. Severe Depression
4???? (possibly MS or other)

How would you like that day? added another med to my depression line up. I am taking wellbutrin alongside my citilopram now, keeping me on 30mg of Pred for a while longer possibly a month.

Also was told I was a prime candidate for a drug that I can not afford. My lifes goal has always been to not want a lot but to be able to afford want I want. I am so pissed off that I can not afford my fucking medical care. I DO NOT want govt health care... I repeat DO NOT...  and today I still do not want.

I need a real break from life.

I spoke to my Rheum about the use of Marijuana today, his only real concern was that he would have to start treating me for that as well, so as long as I can keep at it helps me sleep. not a problem, really MS as well..Fuck YOU world

Wednesday, July 20, 2011

Thank goodness!

My results came back good for my liver function... still anemic but cares. Also did not use cane today.

So those are victories!!!!

Sure I will go ahead and spoil a victory thread.  This feeling of being punched in the brain and dizzyness coupled along the vision problems have made the day plenty difficult... the spots on the carpet where a little much for me.

Last night into this morning

Last night I had considerable amount of yuck going on tremors, head was bobbing, headache and then my hip and knee started feel like hell. OS I decided to take some prescription pain meds to deal with it, they were not touching it, so I took a few more just to get me through the night.... well the fail here was I could not sleep last night overly anxious about it all, tried some deep breathing and meditation i was not able to so instead looking at this more disastrous I took a anxiety tablet, that smoothed out my feelings pretty quickly.

Now this morning has been a rough one just because of being up late.everything is in full swing today and I kind of hope that it happens for tomorrow when I am at the Rheum. I got up from the couch this morning and got pretty dizzy at first and then as I started to walk and I started to see pink flashes in the carpet. Only for a few moments and they went away.... but i saw them. reading was quite hard last night as well.
THis book I started called Prickl Cactus I think is going to be a good one.

I have put a request in through my Friend network for some Marijuana to try and ease some pain at night.. i will see if this works or not... it is highly touted as a medication in Cancer therapy.

Tuesday, July 19, 2011

Fuck Lupus

Nauseous, headache, tired, tremors neuropathy.... FUCK FUCK FUCK~

Nothing to do with recent sadness

But with all the recent Ultra Marathons going on right now, I really miss trail running. Next week the Voyageur 50Mile and half Voyageur will be ran on the trails south of Duluth, then runners will be tapering for Leanhorse and Leadville 100M in SD, following that up with Sawtooth, and then you have two that i have wanted to do, Bear 100 in Utah, and Wasatch. There will also be GrindStone and the Duluth fall ultra 100K which of course leads up to a good winter of training for Tuscobia 150M, Arrowhead 135M...this was one of my benchmarks.

I miss Ultra running and the little enjoyments I got out of it, the gear, the people, learning to fuel/hydration etc.

down kind of day

I do not know the trigger, I have a suspicion it has something to do with a combination of two; food and sleep.
Still entirely too much food sitting here at work, I swear they are bringing in more junk food every moment. we have ice cream cakes, doughnuts, cookies... venison sticks, sausage... ughh, and although i did seem to have a restful night of sleep and not too much effort put in, I think my body needs more than the average person now and I need to start considering giving my self more sleep.

So far I have been able to stay infront of joint pain with small doses of painkillers (well small doses of the narcotic ones mixed in with a larger dose of Tylenol. However my neuropathy and tremors have been pretty constant.

But like I said earlier, pretty sad find myself close to tears several times, This also could just be because of Lupus unfortunately, as it is one f the symptoms of CNS. I started to fire up the CNS problems again last night after the time in the sun, had the double visions again and all. 

Mild anxiety

Last night I ended up in a mild anxiety attack caused by excessive neuropathy, electricity and tremors. I worked through off and on for about an hour with little meditation bursts. I ended up not having to take an anxiety pill. I was close several times. I am glad I held off and I am glad it was just a small one.

Monday, July 18, 2011

ok day

I had an over all ok day.

A new pair of shorts

That is where one of my victories have come from today.

It is a pair that was bought for me by my wife that are a larger size than those that i have been wearing. Not a size that I wanted to get back to wearing but today they are one less battle of something that is fighting me. They fit and I dont need them to fit forever but for now I do and thank you to my wife for allowing me this victory.

Simply Amazing

I am just in awe of how I can walk past all the doughnuts and cookies this morning so I can grad a chef salad, bananas and a yogurt. Only to arrive at work to see a counter full of doughnuts and wannabe  healthy muffins.  Just to funny....

Right Wrist

I have moved my Lupus bracelet to my right wrist.

My reasons, wearing on my left wrist it is not seen by me often enough and I eat with my right hand mostly. My right hand reaches for food so I am hoping that reaching for food I will see the bracelet and i will not grab.

Sunday, July 17, 2011


Should not be this hard, nobody should have to operate in so much pain day in and day out, not knowing from moment to moment on what joint is going to not only hurt but mentally fuck you next.

Last night my feet were so arthritic I could not stand, my head was so bad I could not sit or lie down. I took the monsters of the grid iron as far as pain killers go (stronger than morphine) and it didn't do shit.

I feel like I am at the end of my rope, I do not even want to talk with people as I am just to angry. I am sick an tired of peoples neediness over small items. (like the the industry I am in) Now when someone complains about there boat, I just want smack them and say Fuck YOU! I will give you some problems. Not sure where this is coming from I have never been this person. I know there are millions of people that could look at me and smack me and say the same thing. But you know what, my problems are big to me... so I dont care.

I think I need to remove myself. From what I do not know. But I need something to change and currently doing the same thing day after day is not getting any better results.

I need to find the victory in the day, maybe it will be small but I have to look for a victory in each day. Maybe it is I took 8 pain meds vs 9... maybe it is I didnt feel the need to smack somebody, maybe it is I didnt cry over the fact that I feel like I am loosing my job because I can no longer do it. I dont know, time will tell. but for now. my victory is I know that i need a victory rather than more defeats.

I used to break my running down that way, I looked at sections of a trail rather than the full distance and my goal was always just to get through a section strong rather than looking at the entire mountain.

So today I need to start moving pebbles not the entire mountain at once.


Friday, July 15, 2011

Thursday, July 14, 2011

I am tired of Life

I just want to take some time off... headaches and pain, there has been too much of all of this for too long.

fighting what is destroying you

Last night I had another bad night of depression, caused mostly by pain and also the fact well I am just flat out depressed.
I looked at several different ways that I have battled it in the past. I thought of just drinking until I was passed out or dead, I thought about eating so much food that I would be mentally numb and I thought about just loading u on either pain pills or anxiety meds.

Well what I did do was none of that. I did take some pain pills sparingly just to try and conquer the pain. I passed on the alcohol because really i am such a medical mess right now with all the drugs that I really think I do not need to add Kidney or liver damage to my resume (although this was the one I had planned on all day) Food. I was saved by a cellcept cant eat for two hours after or one hour before. I did get a short meditation in last night to try and work through some of this.

Now one might read this and say, well obviously you do not have a problem because if you did you would have ignored the rules of cellcept and not worried about the liver and kidney damage... not true... those just added another battle to my head last night. That and the fact that I am a coward. I have a blood test next week  and if it were off I would have to publicly answer to my dr on a blood test being off and why.

All though I still believe FUCK LUPUS,  I am starting to think I was given it by who evers god  exists so I can stop running away from my problems and be forced to look at them... well that is my theory today, that will change a thousand times I am sure. Today i am in pain and still on the leading edge of a cold and sad as hell. but I will do my best to get through the day.

Wednesday, July 13, 2011


I am sure that this will be a common theme in my living journal.

It is a matter of identifying the pain. What level is it and what really is the treatment..

I have so many pains right now, My head hurts from Depression, my body hurts from Lupus, I have anxiety at every level and it just increases or decreases; not sure it goes away. I have to live with the pain during the day if I try to fight it with pain killers or anxiety meds, I am non functioning.

This is such a babbling post, and that is alright. It is My journal.

Last night I set some ground work for meditation and it will become a bigger part of my healing; My healing as a whole.

I am almost certain that this blog will be my semi public battle with depression.... so any of you have chosen to give this link to I have chosen because I believe you are friends and will not have a problem watching me fall down... and hopefully build back up to who I really am.

Last Night

I realized how much I am holding inside (note sadness is almost always started by lots of pain) and I just tried to dump. I cried very hard last night. I have such a big journey in front of me, so many things that have piled up. When did I stop taking out the excess garbage? This will be quite the journey for sure.

I took two Dilauded's last night to cut the pain it did'nt (that is a bad sign of how deep this is in my joints).

It was also MTX night. Yuck.

My 245 weight was Definitely fluff, I weighed in this morning at 235. 

Monday, July 11, 2011

What a day

I just don't understand how a person is supposed to live with this.

I was pretty depressed today but kept the diet on track, and for the most part the pain was pretty mild if at all. Tremors were pretty bad though at one point my hands actually were shaking the desk. I was unable to do little small tasks that required dexterity.  Around 5:00 I ended up with really bad craving s for junk food but got them under control, really thought maybe I might have a decent night.  

WAIT FOR IT, BOOM! right around 6:30.. all hell broke loose in my joints... now I am in misery, I think about throwing knives through walls and punching objects out of anger.. but I realize that will not help me other venting, but it will not relieve the pain. So instead i am going to get in some sort of meditation tonight along side some pain killers.

I really do hate pain!

Well it is Monday

For sure what that means is I will go to work and I will take at least 20 pills. most likely more.

It should be easy to start off the days in good moods and hope to keep them stable. Reality, I start of so many days on the bad side that it just is not easy.

Need to stay strong. I had a semi decent meditation last night, short; only 5 minutes. When I was taking the dogs out I had a great view of the humidity setting into the Mississippi river it provided me with enough calm to roll over into a short meditation. Reality of the evening, I need an anxiety pill a flexiral and two bendryl eventually to get me to go to sleep.

Today, I need to accomplish so much. I need to spend an uninterrupted hour at work cleaning my office. I need an additional 2 hours uninterrupted to load the website. I wish the uninterrupted part was possible. even if people do not come in and phone calls are not there, and my boss does not give me a list of amazingly him serving not customer serving things that need to be done, I will still have pain, tremors, mental block, anxiety, depression and other.

Any ways, I need to begin the process of taking meds and putting together a nutritious day of food and hope that is not derailed.

Good news was there was a lot of bloat to the 245lbs yesterday as today I am 240. so only 35 lbs to where I wish I was and 20 lbs to an acceptable place.

Bad news, I am fairly depressed today and I do not know why... I have all types of things to blame it on.. but that would just make it easy, it really would not find what the trigger was. So today I will stick with I am depressed and hope t not unfairly cast the blame all day long on everything that appears to make my day harder than it should.

Sunday, July 10, 2011

Dr. Betty Diamond

This is a name I plan on learning a lot more about.

My Rheumatologist brought this name up to me on the 4th of July. We were talking about my recent fall from numbness in my legs, the constant Neuropathy in my hands and feet, the vision problems, tremors in my hands, my legs, my head bobbing back and forth, headaches electricity running through my body and not to mention a bunch of Neurology tests that point to Nada!

My Rheumatologist, who by the way is far more intelligent than I and most Dr.'s I have met brought up some recent research by Betty Diamond in the last 5 years where some Antibodies that (not sure if only Lupus Patients or all people) my guess Lupus patients have that are supposedly crossing a blood - brain barrier. Up until her recent research this was thought to be impossible.

He feels that even though my inflammation markers in my brain and central nervous system are normal, there is a good chance my Lupus anti-bodies have crossed the barrier. What that means, I don't know. As much as I would love to settle in and read all these research papers by here, I know that they are above my pay grade in comprehension.

What it means Medicine wise, not sure either. All I know is he has brought up Rituximab. I have an appointment on the 21st with Dr. White again. to talk about what this means further.

Not sure

What I am going to put on here. But I am down and out on the inside. I have been battling a disease called Lupus. it has taken away from me the identity I had worked the hardest to gain.

About 4 years ago, I was 300lbs and a heavy smoker, pretty consistent drinker. I took up running thinking it would hep me give up some of my vices for better... long story short, i went from a 300lb runner to a ultra marathoner running 50 and 100 mile races.

Fast forward a few moments to today, I am walking with a cane and taking way to many meds to try and keep Lupus in check... and not doing a very good job of it. I have had a lot of emotional struggles, mostly because I lost running... not so much that running identified me, even though I tried hard to be identified as a trail runner. But I lost the meditation time of fixing me and releasing the anger inside that would build up from everyday stress.

So now I sit here back up to 245 lbs thanks to depression and Prednisone combined with no exercise.
I dont know how I plan on getting back to a better weight, (atleast where some clothes fit me comfortably) Ireally dont think that is asking for to much. But first I need to work on a replacement for running or at least become a more mental stable person where food and booze will not rush into fix an emotion. Booze really shouldn't have a chance right now due to the meds I am on... but dont put it past me.

Today the only Victory I can report is I acknowledge there is a problem and I need to fix it. That and I passed up a 6 pack of cookies to eat on the way home from the grocery store. : )