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. : )