The beginning, continuing journey... etc etc et

[CrazyTrucker]

My journey into this universe began with a serious illness. Unknown to me due to a pain tolerance that’s off the charts I was very sick. I am from Oregon which is in the western USA. I’m a long haul trucker and was delivering in Manhattan NY for a trade show. I had awoken with terrible pain in my lower abdominal area. Many wonderful things happened including finding a place on Long Island to park a tractor trailer!!

Anyway I had someone take me to the ER at Winthrop University Hospital. Which was another miracle. After many test, scans etc they tell me my female organs are infected and abscessed. Why is a mystery at this point. An infectious disease specialist is contacted and he was the next miracle. After two weeks on IV antibiotics a well known oncologist is contacted to do the hysterectomy. She’s an amazing lady. Classy. Compassionate. Down to earth. Humble. Very unusual for top notch surgeons in my experience. I’m told that they don’t know what they’ll find when they open me up. “We know it’s a mess. We just don’t know what’s caused it”. Then I’m told I could wake up with a colostomy. My immediate response?. Well just think how much easier that will make my job driving truck... I won’t have to search for a bathroom to take a dump any more!!

After stunned silence everyone is laughing hysterically. Fast forward. I wake up just as I was warned I may. At first it was a challenge. Now it’s not a big deal. But they also discovered I had what’s known as perforated diverticulitis. Basically part of my colon fell apart. I was shown a picture of it. Pretty bad.

Now, this was May and June 2015. Fast forward to Sept 2015. I was back to work the end of July. I removed most of the staples myself. All was going well. Until I was driving to Oregon. My arms started aching. No idea why. Not badly. But aching. I get out west and deliver my freight. I go home. I’m not feeling right but not bad. I take the pick up to get the mail which is a mile from the house. I can’t lift the mail out of the mailbox. Back at the house I’m doing things out of my typical routine. I’m noticing I’m weak. A couple days later I’m having trouble getting up from the chair. I go to the ET. Blood tests done. Several days I get results. Elevated SED rate plus other issues. Fast forward to a week. I’m barely able to function. Back to ER. Different Dr. He puts me on prednisone. 60mg. In under two days I’m feeling 100 percent better. My PCP tells me I have PMR.

Skipping and fast forward through the winter into 2016. I go to a rheumatologist. He tells me it’s impossible for me to have PMR. It NEVER happens. I’m too young! So I walk out knowing he’s not the Dr for me. But he did say he believes my problem was brought on by the infection.

I fight through the next few months using prednisone to survive. I then switch to essential oils or I can’t drive a truck. Prednisone destroys my blood sugar. I keep struggling through until spring 2017 and see a very good rheumatologist. He verifies I have PMR. So nearly 2 yrs to get diagnosed. He asks me to try methotrexate. Which I do. It does nothing to help.

In fact I got worse. Back to essential oils. Every once in awhile I’d take a single mega dose of prednisone but not often. I’ve used various oils creating my own blends finding what helps me the most. It’s a struggle. Some days better than others. Some days aren’t worth a darn. But still I refuse to give up. Often I think my love for driving a truck is the only thing that keeps me going. Some customers are understanding and work with me. Others are just plain asshats. When they get ugly I just simply tell them I will make sure I don’t haul freight for them again. That I’m sure many other drivers who are more physically capable but who don’t have my 100 percent record for on time will be happy to serve them. Then I tell them thank you very much and have a nice day. Usually I don’t go back. A few times I’ve had to because we had no other truck in the area. I show up and they’ve been nice as could be. I wonder why.... lolololol.

Anyway I’m still here on the highways and biways of America. Still battling PMR. So far only the essential oils have helped enough to get by without destroying my blood sugar. Oh prednisone helps more. But it’s only for emergencies.

On a happy note... I had my first eye exam last week. No issues. My vision is still 20/20. Not bad for someone nearly 50 who’s been a diabetic since 2003. I’m definitely blessed there’s no question. The Drs in NY still don’t understand why I’m alive.

It’s simple. The word is miracle.

[Hidden]

Oh my, what a journey, and good on you, you dont give up whatever life is throwing at you. Keep cheerful and dealing with the bums who have got nothing better to do with their time than complain.

You are a wonderful example of what true grit and determination can do.

Bridget

[Soraya_PMR]

I don’t understand why you take occasional ‘mega’ doses of pred. That’s not going to do much for PMR. Why not a steady moderate dose that controls the PMR on a daily basis? You’ll not be alone in managing diabetes alongside the pred. You’d have to pay attention to your diet, but it’s doable.

[CrazyTrucker in reply to Soraya_PMR]

It’s a long story. The oils basically keep it in check. Every once in awhile they can’t keep up. I have a high resistance to meds. Partially it’s weight. But it’s more than that. When I was a kid I was resistant to things then. I’m even resistant to local anesthetics. So I take about 60 mg for a couple days and it kicks it to the curb. Then the oils keep it in check again. I do that about every 2-3 months

It takes me more prednisone using it daily than most have to take. So daily use isn’t an option. For now anyway.

[Hindags in reply to CrazyTrucker]

By any chance are you a red head of genetically related to red heads? My cousin was a redhead, now silver haired, and her daughter and son too. They have different reactions to lots of drugs, particularly to anesthetics and analgesics. You can google this. There are real metabolic reasons for the differences in drug absorption and effectiveness.

[CrazyTrucker in reply to Hindags]

No. Brown hair. I’m the only one in my immediate family with this issue. Mostly brown hair in family. Both sides. Will have to ask if any aunts etc had red hair that were blood relatives.

When I was on narcotics with my back messed up I was taking mega doses of OxyContin. When I had began recovering I weened myself off all my meds other than diabetes. I went to the pain management Dr and told him what I’d done. He actually had tears in his eyes as he hugged me. I remember him saying in 40 yrs practice I was the second time he’d gotten to hear that.

I haven’t really looked into it. I know my pain tolerance is high. When things get to the point they’re bothering me it’s pretty bad. The surgeon who did the hysterectomy told my sister I had to have the highest pain tolerance of anyone she had operated on. It’s not always a good thing.

[SheffieldJane]

You tell your story like poetry. You have suffered so much and yet your spirit shines through. I am very glad to know you. It is a miracle.

You are not asking for advice are you? I just want to send you a big loving hug. ⭐️

[CrazyTrucker in reply to SheffieldJane]

If someone has helpful information I always listen. My circumstances are just very different than most peoples.

[SheffieldJane]

I know they are Soraya has said it really. You are not getting the best out of Pred. It will be a further strain on your body. Always protect your digestive system from it too, you’ve had enough trauma. Don’t treat yourself like a little work horse!

[SheffieldJane]

I have just read your rationale, sorry. Still concerned though.

[Rimmy]

Hi CrazyTrucker

Like SheffieldJane I am a little concerned for you and the way you are treating this illness. While I realise you have several complicating factors I am not sure there is any solid evidence that essential oils work better than Pred or in conjunction with it - or at all for that matter - even though I realise you sincerely believe they are helping. The very fact you say 'it's a struggle' indicates you are having quite a degree of difficulty and your treatment is not at all adequate. Clearly you are worried about your blood sugar which is impacted by the Pred - but there are ways of managing this as Soraya suggests.

It is also very obvious you are 'one tough woman' and I admire your resilience BUT I truly think you need some additional medical assistance to support your health in the best possible ways available to you. I do understand there are those who try alternative (non-scientifically endorsed treatments) some of which they find useful - but you can do better for yourself I think - our invaluable (award winning) PMR 'experts' on this forum should tune in soon and I'm sure they will offer you some invaluable info and advice.

Whatever you decide with regard to your treatment - all good wishes to you and your future 'trucking' - I'd give you a BIG 'wave' if you cruised by - but I am not in the USA.

Best wishes

Rimmy

[Hidden in reply to Rimmy]

I understand this treatment plan is stopping being put on insulin which if the law is similar to uk would impact on driving certain vehicles.

[PMRpro Ambassador]

Why don't you try using pred for PMR properly? A low/moderate dose of pred, under 15mg/day. often well under 10mg/day, you use all the time would probably be far better and until you try it you won't know. But I suppose it it works for you...

But this doesn't sound like a typical PMR - it sounds far more like a reactive form, which some doctors believe may exist.

[CrazyTrucker in reply to PMRpro]

I have used it properly. It worked well. But as I stated, it prevents me from being able to do my job. So I’ve had to get by with other means of controlling the inflammation.

In my case it took 15-20 mg a day. You know the traditional way of tapering off? That didn’t work for me at all. I had to continue to take the larger dose but increase the time between doses. As the Drs know I’m in a category all alone. But as an old country song says that’s on. I cherish my own company! Had to learn to while on prednisone. No one else could stand me!! Lolololol

[PMRpro Ambassador in reply to CrazyTrucker]

Here we are well aware the "traditional" way of tapering doesn't work in PMR - doesn't work for the majority really so that doesn't make you very different

Not quite clear why it didn't allow you to work though - and how did they tell you to reduce? Just wondering. As I say - if this works for you, fair enough.

[CrazyTrucker in reply to PMRpro]

I’m a long haul truck driver. I’ve been diabetic for many years. The prednisone increases my blood sugar to a level that prevents me from passing the required physical. I can’t use insulin without a waver from the federal government. Which takes months. During which time I can’t work. So I found another way.

Also during this time my body had created a fistula associated with the colostomy. The prednisone exasperated this. The essential oils helped heal it up. The Drs were amazed.

Tapering... it was such a mess I hit the delete button on that Dr and entire appointment. He’s a jerk. Let’s see... i had already decreased it to 20 mg a day. I believe he said 20 a day. One day do ten. The other days do 20. For a few weeks. Then ten say Tues and Fri. Then 20 and ten once. Then 20 and ten twice for a week. Then once for three. Then twice for two weeks. It was insanely complicated. Plus my body didn’t like it at all. Mentally or physically.

[PMRpro Ambassador in reply to CrazyTrucker]

OK - fair enough.

Good lord - no wonder you couldn't reduce. That is the most crackers option I've heard and I can't imagine any of us could have used that in PMR.

And I can also assure you that is NOT a traditional way of reducing pred in PMR, bears no resemblance to ANY international recommendations I have ever read. No, had you done that but with a drop of 2.5mg each time it might have got you somewhere. We prefer 1mg steps down.

[Soraya_PMR in reply to CrazyTrucker]

Heavens above! No wonder you couldn’t cope! That’s not a taper, that’s a recipe for disaster. No wonder your blood sugars went crazy. Your poor body going through that!

How does a sensible, workable taper starting around 10mg-15mg daily sound? One that will stop you struggling and enable you to control your blood sugars, plus control the inflammation and risks that go with it.

[DorsetLady PMRGCAuk volunteer]

Hi

What a nightmare for you... but you know what you’re here to tell the tale.

What a feisty lady!

Love your sense of humour - that’s what gets you through.

Others have expressed concern over your lifestyle, but I guess you want to do it your way, and that’s fair enough but don’t let things get out of hand.

Better days ahead.

[CrazyTrucker in reply to DorsetLady]

I don’t know any other life style. Trucking is all I’ve ever done. In 2004 I messed up my back. I was off the road 18 months. In bed nearly a year of that. Of that time I was totally and I mean totally bed ridden almost six months.

Couldn’t sit up. Couldn’t move my left leg. Turning in bed was a challenge. This was after 2 surgeries. They didn’t know if I’d walk again. Summer of 2006. I was back in a truck. My back feels the best when I’m sitting in the drivers seat. Now tell me that’s not a miracle of its own!

Here’s a song that says it all...! Lolololol

youtu.be/LjHh7aNW2jw(Not working as expected?)

[SheffieldJane in reply to CrazyTrucker]

This should be our anthem. I love it!

Impossible though it must be on the road, cutting out the carbs and sugar somehow, would control those sugar spikes. I know, I know.........

[DorsetLady PMRGCAuk volunteer]

Love it!

[GOOD_GRIEF]

Happy trails, Crazy. I'll be looking for you on the roads around NYC.

[CrazyTrucker in reply to GOOD_GRIEF]

Oh I’m around there at times. Just depends on freight.

[Oldman-1]

Amazing. I have to say there are those who are different in their own way and experience as you may have noticed on here. Every story on here lets us all become aware of the varied medical issues. PMR and FMR are "THE" unseen disabilities. For a few, they do go away, for most they don`t. CT, may you have a fruitful life regardless of your medical condition.

[SheffieldJane]

Isn’t she great?!

[Poppy_the_cat]

Dear Lord, you are a miracle. A phenomenon! What an inspiration!

A close friend who is French totally swears by essential oils and, as you say, she blends them to her specific needs.

Your journey has been a hard one indeed.

Everybody else has mentioned medication and discussed it with you.

You yourself have explained your battle to reduce inflammation.

Inflammation is indeed all our major Woe. I also notice you have had to take some very serious Antibiotics, necessary to help save your life given the seriousness of your situation.

I could easily imagine that you will have also lost your appendix? Mine ruptured and nobody realised, not even the doctors in hospital at first...it took a while. Recent medical thought in only the last few years has come to realize that the appendix is not a vestigial organ, left over from our evolution. It in fact plays a vital role in the gut and the immune system. Advice is that if we are without it, we should supplement our diet with fermented foods.

Fermented foods such as pickled vegetables.

I have lost both appendix and tonsils which accounts for a as my Dr put it "a lot of lymph tissue".

Also to help restore and repair our vital gut biome after taking Antibiotics in particular we should take Probiotics- the billions of beneficial bacteria we cannot do without.

I would suggest the easiest Probiotic to take would be coconut water based Keir. I can help you with that, explaining and demonstrating how you could do it.

Then you need Prebiotics.

Prebiotic fibre feeds the little Probiotic critters. Its thought of as the 'manure that feeds the Probiotics!' It helps them to take a toe hold and thrive in the gut.

Due to your surgery, rather than taking powdered Inulin as a Prebiotic source of fibre, I would suggest you eat something else which has the highest source of inulin naturally. Red Chicory! It is delicious and easy to eat behind the wheel!

I am sure you a lovely comfortable cab on your truck. You will have a little fridge (for keeping the kefir grains in between ferments) and you will also have it warm, so you can ferment the kefir in two Mason jars. With very little utensils you can do it!

All you need is the coconut sugar, preferably organic, and bottled mineral water.

I would love to help you and guide you.

My benefits have been too many to mention here in this post. I do 'ot exaggerate if I say, without my Kefir Probiotic that I brew I probably would not be here today.

By rebuilding your gut biome, (having had the colostomy you will be more vulnerable from an immune system point of view) and improving your immune system, as 85% of our Immune System lives in the gut, you will benefit immensely; even the essential oils will work better in unison. Excluding certain, known inflammation provoking elements from your diet will help you further. So much can be done!

'God helps those that help themselves'

With your true grit and fortitude you can achieve anything!

If you would like to private message me I can send you my kefir instructions, modified for 'the road'😉😎

Huge hugs,

From Wiltshire in the UK.

Poppy the 🐈

[Poppy_the_cat]

Forgive me, but I am assuming you have some bowel left ? I hope I have not presumed too much. My Godson had to have a large part of his bowel removed, but had a little left.. I am hoping this may be your case too. I am hoping that maybe fermented vegetables might even be of some help? Fingers crossed.

Poppy

[CrazyTrucker in reply to Poppy_the_cat]

Oh there’s parts left. I have a colostomy. It possibly could have been reversed. But after researching the success rate was less than what I’m willing to accept.

So unless something amazing happens it’s my friend for life.

[Poppy_the_cat in reply to CrazyTrucker]

Ok, great then Probiotics would benefit you I would say! That is good news.

I understand what you are saying about the reversal of the colostomy. My Godson during his leukemia relapse aged 9, for the second time, was diagnosed with sepsis. He was not able to cope with the dreadful rigours of the Chemotherapy. He became very ill and it was only thanks to his very attentive mother who picked it up, when the nurses in intensive care were sceptical. Later she was proved right. He had to have a 7 hours operation to remove a large part of his bowel, but enough was left to allow the colostomy to be reversed. It was done so, successfully, some years later and he is now first year at University. At least the surgeons gave you the option. I know that James's bowel needed the few years to recover, so over time you too will hopefully improve generally.

Let me know if you would like the instructions with photos that I have put together for preparing your own kefir.😉

Poppy the 🐈

[CrazyTrucker in reply to Poppy_the_cat]

That’s one thing about living in a semi truck. It limits my options. A lot.

[Poppy_the_cat in reply to CrazyTrucker]

Fermented vegetables such as proper sauerkraut, not the vinegar stuff you buy in the supermarket, are made by placing them in a widemouth glass jar in a salted water solution, with a heavy glass weight on top of the vegetables to keep them submerged... Would you be able to stash a jar somewhere cosy in the cab?

[CrazyTrucker in reply to Poppy_the_cat]

Just seeing the word salt my body started sweeping!! Lololol. I will have to look into it. Right now the PMR is my biggest enemy.

[Poppy_the_cat]

Interesting read on colon surgery and Probiotics...bit long but interesting.

ncbi.nlm.nih.gov/pmc/articl...

Poppy

[vnett]

You are astounding!! There’s probably no need to say it .......stay strong and I guess keep on trucking!! Hope for good days ahead!