There’s no place like home ❤️

We’re back to our warm Missouri peace! Really great trip but glad to be home. 

So chemo is my treatment answer, gonna knock out the faulty immune system and see if I can “reboot” so to speak. I was really hopeful to be put on a new stem cell trial but I didn’t meet the criteria. Boooooo hissss,  but maybe next time. There’s 20 people in the trial right now and it’s looking promising for people with “my kind” of Crohns. 

Besides learning that I was misdiagnosed with reactive arthritis I found out that the lung involvement at Christmas was Crohns and my lungs are clear now and functioning almost properly. SO good news! 

I also have several broken ribs that I’ve been walking around with, most probably caused by all the violent coughing.              I had NO clue…ALSO I have a heart murmur. The docs at Mayo found EVERYTHING! 

In 4 12 hour days I met with 6 specialists, had 4 sets of x-rays, 2 MRI’s (the story of the MRI’s coming tomorrow – it’s hysterical), 2 CT’s, 2 pulmonary tests, an echocardiogram, a stress test, about 9 tubes of blood drawn and a poop test! AND a lot of sitting and waiting. I can’t name one of my areas that hasn’t been “checked” by the best! 

Next week we meet with the docs at Barnes Jewish Washington University in STL, they will handling my care with oversight from Mayo. 

All I can say is Thank God for good insurance! AND thanks to my wonderful husband who works his butt off to keep us covered! 

   
 

The Pall of America…

Definition of pall

intransitive verb

1: to lose strength or effectiveness

2: to lose in interest or attraction <his humor began to pall on us>

3: dwindle <our enthusiasm soon palled>  to cause to become insipid

Hey we were able to fit a language arts assignment in for Truman 👍🏻

The Mall of America was kind of a disappointment BUT we had fun anyway. The JW Marriot is beautiful and I would recommend a stay there to anybody! Thanks Marriot rewards program.

I’m not sure what we were expecting but besides being BIG BIG BIG not really all that great. If you go bring lots of dough 🤑 Super expensive and crowded. Living in such a rural environment has made all three of us somewhat intolerant of being bumped and bustled. IKEA always rocks but since we didn’t really need to cart a Fetlaff desk or an Ufopheni Armoire home( and if you didn’t get that joke than you haven’t ever been to the Swedish/Northern Germanic Superstore! 😏 pull up a chair to my Bjursta table and I’ll hand you a plate of Salmon with Lingonberries and tell you all about it! Ok, I’m done -you get the point. LOL

Did I mention MN is cold?

  
Weird “eyeball” in the sky here? No idea what that is 👽

It looks better in the pic than it tasted 😩

He ate 3 bites, money well spent 😳

Cocktails were awesome tho!

  
The teenager scowl

For my friend Kyla!

He’s wishing his mom wasn’t so embarrassing

Kinda Cool

2 days off!

We’re FREE for a couple of days. Gonna head to the twin cities and the Mall of America to see what kind of trouble we can get into to. 

I have nothing witty to say this morning so I’m going to fill up this post with pics. Im LAZY and have decided to do nothing but the minimum required  😏 and Mimosa’s ! 

   
Mestrovic’s ” Man and Freedom” …

 
This picture creeps me OUT!

   
😍

 
Dinner at Newts Burgers 

   
Just cause it’s cool. 

    
 
Dale Chihuly blown glass, I could look at these forever. Pictures don’t do it justice. 

Poked and Probed!!! 😁

After  2 days – 12 hours each of consultations, tests, scans and literal probing I’m wiped out! BUT also feeling very optimistic and thankful. When I’m thinking a little more clearly I’ll write about all the cool things that have been done to my body so far but I did find out that I was misdiagnosed with the Reactive Arthritis in 2005 and the arthritis I have was/is a manifestation of the Crohns. NOW the question is still how to treat all of the different areas in my body that are being destroyed by that demon that lives inside of me 👹!!! I wonder if an exorcism would help? I’ll have to ask tomorrow if Mayo offers that particular procedure since they do EVERYTHING else! This place is truly amazing and I seriously feel humbled to be here, I thanked God last night for this opportunity it’s such a blessing. 

Tomorrow we will begin another day bright and early! 

If I could ask a favor of all of you, we found out yesterday that my baby brother Zion is in the hospital in Oregon undergoing some emergency blood transfusions. If you could send some  good thoughts his way it would be so appreciated! 

A quick pic of my amazing boy who has been a total trooper!

  

We made it !!!

The real scoop on Rochester-it’s freaking cut you to the bone, OMG is this what Canada feels like?                                       Blue Eskimo Ass COLD! 

 BUT 

an absolutely adorable town! 

 I’m doing something I NEVER do, I’m posting a NO makeup, zit on my nose full on FAT  prednisone “moon face” pic.   I’m not always  gorgeous 😝 true story!

 Tomorrow morning bright and early it begins. Bring on the needles, scopes, probes and weird loud machines-I’m READY! 

A spouses perspective

Ok so my beautiful wife has asked me to write a post about being married to  someone with autoimmune diseases. So what do I do? I go online to get some inspiration (plagiarize  just like in school) for the post and all I can find is a bunch of whiny people

  talking about how sad and put upon they are. I don’t feel that way, I get frustrated and pissed off because I can’t do anything to fix it. (If you know me you know  I like  to fix things).  BUT I wouldn’t change anything!  My vow was for better or worse, in sickness and in health and We take them seriously! PLUS she sticks it out with me while I lose all my hair 😢so it works both ways even if the ER trips are some of the reason I’m bald 😝. So here’s my advice Suck it Up ! Make the most of everyday that you have,  you never know what will be coming next!

 Boom (Mic drop) 🎤

If you’d like to see more posts from me please comment below I know I’m not nearly the word smith that my awesome wife is but might consider more in the future. 

Crohns, thanks for the laughs!

Disclaimer-don’t read this if your eating and if you are eating send me some right NOW! 

This is gonna sound crazy (I know your thinking like about every third thought that comes outta of her mouth?) but I’m actually kinda thankful for getting Crohns. Yup, go ahead leave me some comments I’m ready! 😝

Crohns has humbled me.  It has shown me  that I can persevere through some pretty gosh darn awful circumstances and still laugh. I’ll tell you what, you haven’t truly lived until you have your big white ass in the air with one guys (surgeons) hand literally submerged, a “fellow” (which is medical speak for a guy that can’t afford his own practice yet) pointing out scar tissue paths to your husband (like he hasn’t ever been down in that area 😉) and a couple of student docs peering into your “cavities”. Yes Sir 5 grown men all looking and touching my backside and not in a “Hey lets tape this and make some money on-line” kinda way.  I know your laughing right now, and so am I. AND I did then to, because if I hadn’t I think I actually could have cried myself to death. 

AND speaking of death, Crohns has brought me to the edge of that particular “ride” 2 times. AND what people say is so true, it really does put some stuff into perspective. 

Number 1-who cares how much money I have it’s all gonna go to medical bills anyway LOL  Money is no longer my barometer for sucess. Seriously Crohns has broke our wallet. 

Number 2-I’m STRONG, stronger than I ever thought I was. Don’t get me wrong just cause I’m strong doesn’t mean I turn down the good drugs! Which I’ve been cut off from FYI- never tell your doc you “NEED” your opioid prescription “NOW” that’s apparently trigger words for “possible pain medication abuser” which I’m not by the way. It only took me 2 months to “dry out”. I’m totally kidding! Or am I???😁

Number 3-I can keep my cool and act “normal” even when shit is rolling down my leg under my jeans cause after 4 surgeries that involve your sphincter muscles sometimes you just don’t feel IT till IT hits you mid thigh. 

Yup I’m strong, my families strong and my faith is strong.  What else could I ask for? 

  

“What’s an autoimmune disease anyway?”

So glad you asked 😉

So the technical definition first:

A disease in which the body’s immune system attacks healthy cells.

My definition:

So one day your cells are all chill and happy doing their respective jobs moving oxygen, making tissue and keeping their organelles all satisfied. Then out of the blue for reasons unknown (it truly is unknown lots of theories but no concrete “Here’s the reason” exists) a group of your cells see their long time neighbors and are like “Who are you jerks? You don’t belong here!” And the neighbors are like “WTF we’ve lived next to you for years Andre?” And Andre says “Your not Sheila your an imposter and must DIE!” AND then BOOM it’s on! 

Yup it’s a cell rumble in the jungle and the apartment building (that’s you and your jacked up body) are going down! 

See isn’t mine better 😜

  
Here’s a statistic that will blow you away-ready?

According to some really scientific study done in 2011 (I honestly can’t remember which one but it was totally legit-I promise)

1 in 12 women and 1 in 20 men will

develop an autoimmune disease in their lifetime.

SAY WHAT???????? 

There’s currently like a butt load of autoimmune and autoimmune related diseases recognized- LOOK!

Acute Disseminated Encephalomyelitis (ADEM)

Acute necrotizing hemorrhagic leukoencephalitis

Addison’s disease

Agammaglobulinemia

Alopecia areata

Amyloidosis

Ankylosing spondylitis

Anti-GBM/Anti-TBM nephritis

Antiphospholipid syndrome (APS)

Autoimmune angioedema

Autoimmune aplastic anemia

Autoimmune dysautonomia

Autoimmune hepatitis

Autoimmune hyperlipidemia

Autoimmune immunodeficiency

Autoimmune inner ear disease (AIED)

Autoimmune myocarditis

Autoimmune oophoritis

Autoimmune pancreatitis

Autoimmune retinopathy

Autoimmune thrombocytopenic purpura (ATP)

Autoimmune thyroid disease

Autoimmune urticaria

Axonal & neuronal neuropathies

Balo disease

Behcet’s disease

Bullous pemphigoid

Cardiomyopathy

Castleman disease

Celiac disease

Chagas disease

Chronic fatigue syndrome**

Chronic inflammatory demyelinating polyneuropathy (CIDP)

Chronic recurrent multifocal ostomyelitis (CRMO)

Churg-Strauss syndrome

Cicatricial pemphigoid/benign mucosal pemphigoid

Crohn’s disease 💩💩💩

Cogans syndrome

Cold agglutinin disease

Congenital heart block

Coxsackie myocarditis

CREST disease

Essential mixed cryoglobulinemia

Demyelinating neuropathies

Dermatitis herpetiformis

Dermatomyositis

Devic’s disease (neuromyelitis optica)

Discoid lupus

Dressler’s syndrome

Endometriosis

Eosinophilic esophagitis

Eosinophilic fasciitis

Erythema nodosum

Experimental allergic encephalomyelitis

Evans syndrome

Fibromyalgia** 

Fibrosing alveolitis

Giant cell arteritis (temporal arteritis)

Giant cell myocarditis

Glomerulonephritis

Goodpasture’s syndrome

Granulomatosis with Polyangiitis (GPA) (formerly called Wegener’s Granulomatosis)

Graves’ disease

Guillain-Barre syndrome

Hashimoto’s encephalitis

Hashimoto’s thyroiditis

Hemolytic anemia

Henoch-Schonlein purpura

Herpes gestationis

Hypogammaglobulinemia

Idiopathic thrombocytopenic purpura (ITP)

IgA nephropathy

IgG4-related sclerosing disease

Immunoregulatory lipoproteins

Inclusion body myositis

Interstitial cystitis

Juvenile arthritis

Juvenile diabetes (Type 1 diabetes)

Juvenile myositis

Kawasaki syndrome

Lambert-Eaton syndrome

Leukocytoclastic vasculitis

Lichen planus

Lichen sclerosus

Ligneous conjunctivitis

Linear IgA disease (LAD)

Lupus (SLE)

Lyme disease, chronic

Meniere’s disease

Microscopic polyangiitis

Mixed connective tissue disease (MCTD)

Mooren’s ulcer

Mucha-Habermann disease

Multiple sclerosis 👹👹👹

Myasthenia gravis

Myositis

Narcolepsy

Neuromyelitis optica (Devic’s)

Neutropenia

Ocular cicatricial pemphigoid

Optic neuritis

Palindromic rheumatism

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus)

Paraneoplastic cerebellar degeneration

Paroxysmal nocturnal hemoglobinuria (PNH)

Parry Romberg syndrome

Parsonnage-Turner syndrome

Pars planitis (peripheral uveitis)

Pemphigus

Peripheral neuropathy

Perivenous encephalomyelitis

Pernicious anemia

POEMS syndrome

Polyarteritis nodosa

Type I, II, & III autoimmune polyglandular syndromes

Polymyalgia rheumatica

Polymyositis

Postmyocardial infarction syndrome

Postpericardiotomy syndrome

Progesterone dermatitis

Primary biliary cirrhosis

Primary sclerosing cholangitis

Psoriasis

Psoriatic arthritis

Idiopathic pulmonary fibrosis

Pyoderma gangrenosum

Pure red cell aplasia

Raynauds phenomenon

Reactive Arthritis 💆

Reflex sympathetic dystrophy

Reiter’s syndrome

Relapsing polychondritis

Restless legs syndrome

Retroperitoneal fibrosis

Rheumatic fever

Rheumatoid arthritis

Sarcoidosis

Schmidt syndrome

Scleritis

Scleroderma

Sjogren’s syndrome

Sperm & testicular autoimmunity

Stiff person syndrome

Subacute bacterial endocarditis (SBE)

Susac’s syndrome

Sympathetic ophthalmia

Takayasu’s arteritis

Temporal arteritis/Giant cell arteritis

Thrombocytopenic purpura (TTP)

Tolosa-Hunt syndrome

Transverse myelitis

Type 1 diabetes

Ulcerative colitis

Undifferentiated connective tissue disease (UCTD)

Uveitis

Vasculitis

Vesiculobullous dermatosis

Vitiligo 

AND I apologize if I missed a few…
CRAZY-RIGHT?

Disclaimer-My true cells names were changed to Andre and Sheila to protect their identities. Like I would really publish their true names-this is the Internet!!!

Yup!

  

History finale – woohoo

So everything was going well, I felt great and finally had been able to kick the prednisone to the curb after being on and off of it for 2 years. I was thrilled because anyone who’s been on the PRED for an extended period of time can tell you it’s a miracle drug and a curse rolled into one little pill. 

Right before Thanksgiving last year I started feeling crappy, dry hacking cough, body aches and just overall gross. Went and saw my wonderful PCP, got a breathing treatment and scrip for an antibiotic and went on my way. By mid December I wasn’t getting any better in fact I was getting a lot worse. Shortness of breath, coughing like I’ve never coughed before and severely congested. Went back to the doc and got a nice big shot in the rear after a chest x-Ray revealed I had pneumonia.  Started another heavy duty antibiotic STILL didn’t get any better. Talked to my PCP who told me to get my butt to the ER, I said NO WAY!  It was Christmas time I had a ton of stuff going on and lots of mom duties for the school blah blah blah. Saw the GI doc for a follow up during this same time who also told me to go to the ER, again I said nope. I’m STUPID! Really really hard headed and I never learn. 

Christmas Day, made it thru presents and feeding  everyone lunch then BAM an elephant sat on my chest. That damn elephant made another hasty trip to the ER necessary. 

5 days hospitalized -yuck! Thank God for my wonderful husband, son, mom, and in-laws! I’m blessed!

While in the hospital it was determined after OMG so many blood tests it was unreal. ( I have been tested for every virus, parasite and fungus known to man) BECAUSE the lung infiltrates from the Pneumonia were not going away. After being treated with boatloads of IV antibiotics, see since being diagnosed with Crohns I had been taking Immuran which is a immunosuppressant drug so it totally knocked out my immune system. THUS the pneumonia BUT the antibiotics still should have knocked it out. 

SO, a theory is I have developed Crohn’s in my lungs. WHO KNEW? Apparently it’s very rare but does happen. SO yes finally, that is one reason for Mayo the other I can’t take the gold standard for Crohns which is the wonder drug Humira. You know that drug that you see umpteen million commercials for, I can’t take it. Because 1 the cancer history, Humira can cause more cancer and 2 it apparently can make the MS worse. 😢 SO the hope is the brilliant docs at Mayo can figure it out! 

There you have it COMPLICATED. 

I’m apparently a good candidate for stem cell therapy and that’s my prayer but HOLY MOLY its expensive and only has about a 30% chance of working. My prayer is that there is some kind of miracle drug in trials that I can be a Guinea Pig for, fingers crossed! BUT one things for sure I can’t stay on 40 mg of Predinose for the rest of  my life, my face looks like a puffy pink pillow. AND I’m FAT I mean more FAT than normal. AND I’m vain! in another post I’ll give examples of the horrible things pred can do to you but for right now I’m only gonna complain about my appearance, I’m shallow like that 😉

If you’ve gotten this far, a big thank you for hanging in there. AND a favor if you have any friends, family or colleagues that suffer from one or more of my maladies-send them here. I’m gonna be in front of a gaggle of specialists. I’d be happy to get any questions answered, might as well put my insurance to the test!