Nearly Umm... Can I say I ALMOST Died In here?!

Hi Everyone. It’s been forever and a day since I last logged in. I’ll try to be brief but A LOT has happened. Spent 10 years caregiving for my husband who passed away Nov of 2018. (And a LOT from then to now!) Over the years I’ve taken the following for my PsA:
• Plaquinil
• Methotrexate
• Otezla
• Enbrel
• Cosentyx
• Orencia
• and the last one was Humira

My rheumatologist had been holding off on Humira, saying it had more “potential” of leading to other infections. But finally my Quality of Life was so low, I asked her to please, let’s try it. (There were nights I couldn’t get my trash to the curb, and days I couldn’t walk to my mail box 200’ from my front door. Staircase in my house was ALMOST impossible to navigate but one step at a time, I got to the top eventually. With my Infectious Disease doctor’s blessing, we ventured into Humira territory. This past January and February I felt GREAT! As snow flakes were starting to fall, I bought a HUGE snow thrower. Cleared off my townhouse areas, 2 neighbors to my left and 2 neighbors to my right! It felt SO GOOD to be able to use muscles and move like I hadn’t moved in years!

Then came April 30th. I thought I had COVID despite having my 2 vaccinations on board. Spent 2 days trying to find COVID testing, finally got to Urgent Care. I was negative on the quick version COVID test. But they also told me to get to an ER IMMEDIATELY!! My white blood count was 20,000. And here’s where it gets “interesting” to say the least. I had a gram negative pneumonia; a 4 cm bleeding stomach ulcer; a urinary infection; and I was septic with a blood infection! FOUR different infections!! My hemoglobin was dropping and hit a low of 6 (out of roughly 17-ish for men.) Received my first ever blood transfusion… 4 pints. It was kinda shocking looking up and seeing a bag of blood leading into my arm. I was now in Medical ICU. Endoscopy showed the 4 cm ulcer and my new GI surgeon told me the grossest thing I ever heard: I was digesting my own blood! No more gory details but I’ll just say that blood wanted to get out! And out it did… over, and over, and over… all night!! (Those poor nurses!!) Then my hemoglobin started inching up. From 6, to 8.3, to 9.7… and guess what. I didn’t die!!

Oh, you thought I was done?? Oh but no! I was discharged. Realized being well enough for discharge is not completely well! 11 days flat on my back left me a little weak in the legs. Three days home, and lost my balance, went to break my fall. Left hand was flat on the floor but my wrist and arm kept going!! I folded my wrist OVER my hand and… CRACKKKKKKKK. So now I have a new titanium plate screwed into my wrist!

The whole mess wasn’t only Humira, but I MUST say… Humira is a wonderful biologic. I knew the POSSIBLE side effects (although never dreamed these specific ones!!) Also, my NSAID Etodolac had its part in it too. Etodolac is what tore up my stomach causing the bleeding ulcer, AND opened me up to H. Pylori as the major infection in my ulcer. Four IV antibiotics in-hospital. Day of discharge my &%^(&%'ing pharmacist REFUSED to fill my oral antibiotics!! (Don’t even go there!! I got Walgreens regional manager involved!! I GOT MY ANTIOBIOTICS! And, and different local Walgreens for my EMERGENCY prescriptions. And a gift certificate for $25! LOL!!! That’s the comic relief in my nightmare!) I’m not on anything now except Arthritis Strength Tylenol and PsA is going haywire!!

Thanks for letting me air my saga!
Colin

The End

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I remember you! It’s been quite a while since you’ve been here, so welcome back.

First off, I’m so sorry to hear of your husband’s death. May his memory be a blessing. Your health struggles. . . Wow! Now I understand why your doctor was hesitant to put you on Humira. That’s really something, just how sick you got. And you really tried to outdo yourself with that fall. That break sounds awful.

You mentioned the issue with the NSAID. Were you on anything to protect your stomach? I’m bringing that up specifically because that was a part that was likely avoidable. Doesn’t do much for you at this moment, but I do want to use the opportunity to remind other people that THIS is why they should be taking Prilosec or similar when they’re on NSAIDS.

A question for you. Are you comfortable with your rheumatologist at this point? Is she going to try you back on any of the disease modifying meds?

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Thanks for remembering me, Stoney… and, for the warm welcome back! As you can imagine, being Jim’s caregiver for those years became a full time act of love plus a little more. I lived, breathed, and almost slept those 10 years caregiving. And the last 3 of them he was all but “under house arrest” tethered to his oxygen concentrator. Even his story is one of side effects… and also preventable. His cause of death was Bleomycin Induced Pulmonary Fibrosis… the very same drug that Lance Armstrong was advised not to allow in treating his cancer because it would destroy his lungs, and he’d never ride a bike again. Except no one warned us that Bleomycin would probably destroy Jim’s lungs. We cured Jim’s Hodgkin’s Lymphoma… the most easily treated cancer. But the treatment got him. And now, yes… the good happy memories overshadow the rough ones. I laugh again! I even had a dream with Jim in it 6 months after his passing. In my dream, Jim and I were in our garage and he tells me, “I’m going to clean the garage.” I said, “You can’t do that. You’ve been dead for 6 months!” He looks at me and says, “Well, $#!+!” I woke up laughing hysterically!! That was so very Jim!!

Now I’ll try to answer some of your very wise questions! I owe my life to so many amazing doctors and nurses and technicians behind the scenes. It’s going to sound a little weird at first when I say I wish I felt more pain as things were developing! I NEVER felt a single tingle from that ulcer. But they told me it did not occur overnight. It was brewing a LONG time. And no, I wasn’t on Prilosec or any other Proton Pump Inhibitor during the few YEARS I was taking Etodolac. I’m on prescription strength Omeprazole now! (Generic Prilosec.) And I was on an IV PPI in the hospital. I’m actually not sure which came first, the tear in my stomach or the H. Pylori infection. I’ll finish up this last prescription and I’ll be done with it. But I’ll tell you what was far worse than swallowing that pill 2x/DAY… DRINKING Pepto Bismol FOUR times a day!! The Bismuth in Pepto Bismol is part of the treatment for H. Pylori. May I never see the color HOT PINK ever again!!!

What do I now think of my Rheumatologist? I love her more than ever!! For her to hear what a patient of hers was going through absolutely ripped her apart. This was not what she went into medicine for. This could have happened no matter who my rheumatologist had been… no matter who prescribed my Humira. I REQUESTED it. And, I was fully aware that it (or any biologics for that matter) MAY have severe side effects for SOME PEOPLE. In the same way, I still have all the same respect and trust of my Rheumatologist, I also still know that Humira is an amazing biologic. As you may recall, I’m also HIV-positive (and doing phenomenally in that area!) And over the years I’ve lost dear friends whose cause of death wasn’t this virus at all. It was things such as Pancreatitis. Many antiretrovirals have Black Box Warnings, just as Humira and other biologics have. (… " the sternest warning by the U.S. Food and Drug Administration (FDA) that a medication can carry and still remain on the market in the United States. A black box warning appears on the label of a prescription medication to alert you and your healthcare provider about any important safety concerns, such as serious side effects or life-threatening risks.") It doesn’t mean you WILL get those side effects, but it is possible. (They even read that small print in commercials for so many drugs and biologics these days. We’re numb to them, but they are there!)

Right now, the only things I’m allowed to take or use are Arthritis Strength Tylenol and Diclofenac Sodium topical… nothing to actually treat my PsA. And yes, Diclofenac does do something, as temporary as it is. I used to only apply it at the area of my Spinal Stenosis. Now, I use it from my neck, out to my shoulder blades, down my entire spine, just short of my butt crack! (I’m sorry! But you get to where you just call it like it is! Just as by Day #2 in the hospital, I simply told the staff, “Modesty has left the building!” I had way more things to worry about than my butt showing through my hospital gown! :wink: ) If they sold Diclofenac by the 55 gallon drum, I’d bathe in it! Right now my Rheumatologist is as fearful of putting me on another biologic as I am of going on one. She and I at least want to give my body a rest from what it’s been through. And to put that into perspective, my Primary Physician told me that no stress test, either chemically induced or by treadmill, could tell them anywhere near what my body told them from what it went through during those 11 days!

Oh… and I just have to add… I was diagnosed with Type II Diabetes about two years ago. I did manage to bring down my A1c down to 5.7 from 9 with one medication, plus diet within the first 9 months of diagnosis. BUT since this hospital nightmare, ALL symptoms of Diabetes are gone! My first week home I was hitting low fasting glucose levels in the 50’s… WAY too low! I’m now on NO Diabetes medication; my fasting glucose levels are high 80’s to low 90’s; I eat ANYTHING. About two weeks ago I went back to my sugar-free Pepsi and Coke… and mid-day I went into the 60’s glucose level. I’ve lost 40 lbs since the day I was admitted. I’ve gone from a 36-inch waist to a 29-inch! (Good thing I held on to some old jeans from before Jim and I ever met!) Even my feet are thinner!! And, I no longer need blood pressure meds. My BP is about 130/65. (Considering one day about 2 years ago in Rheumatologist’s ofice I was 200/100, I’ll take it 130/65 gladly!) But I will say the 200/100 was an extreme one-time occurrence, I had labile blood pressure that could suddenly swing HIGH to LOW or vice versa… now it’s a constant GOOD BP!

Hi Colin,

That’s some experience!

Humira appreared to hate me, so much so I lasted a mere 8 weeks on it. It increase bowel output considerably, reignited my asthma, dormant for at least 20 years and had me feeling emotionally like I wading through a place of impending doom. But once I stopped it and it got out of my system everything came back to normal.

I would really ask who prescribed your anti-inflammatory with a stomach protector or PPI? You appear to be blaming the humira for everything but I’d be blaming the ulcer bursting primarily given the significant infection issues that that induces which then allowed humira to make things worse because it titivates your immune system and has a decent half life too.

Has your rhemy considered the JAK inhibitors - the new kids on the block? The beauty of them is their short half life so if they’re unsuitable they’re out of system within days so unable to cause anymore issues. And they’re in tablet form so again faster through your system. Also they are far more targeted than the anti-TFNa ones like humira so essentially likely to cause less collateral damage. Just some food for thought.

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Thanks for the response colin. And also thank you for the reminder of your HIV status. I had actually forgotten that, but interestingly it was something that crossed my mind when you said you had so many infections. In some ways though it sounds like your overall health has changed in the more positive direction. I wonder if the low blood sugar was part of your fall though. That’s always that fine line to walk with diabetes of controlling glucose levels verse over controlling them. My mom is a type 1 diabetic as well as having psoriatic arthritis for many years, so I know more than a non-diabetic should about it.

It’s interesting that you mentioned bleomycn. If I remember correctly my mother-in-law used that for warts on her hands, and it turned part of one of her fingers black for quite some time. Yes, sometimes the treatment is definitely quite damaging. I’m sorry to hear about the level of damage that it caused to Jim’s lungs. That’s really scary.

Diclofenac. I have definitely had that desire to be than it as well. I have actually started using topical CBD oil, and have now really fallen in love with that. The main reason why I would not want to bathe in it is because it typically has some sort of mint type oil in it, which you would definitely want to keep away from certain parts of your body. Other than that I absolutely love it. I find it works so well, that I can actually feel the difference in tendon inflammation within an hour. Another thing to consider, seeing that your options are definitely a bit limited right now.

I am also really glad to hear that you have full faith in your doctors. That is really important! I know some people will keep seeing doctors that they don’t have full faith in, and maybe it’s okay for some situations, but generally speaking it is much better to have faith in your doctors.

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I was also thinking about all the changes in my own health status over the last 8 years, my life status has certainly stayed fairly stable. I’ve got one kid off to college now, and she’s a college freshman, and my younger one is off to high school now. But I’m still on the same house and all that.

8 years ago I had just gotten my first pair of glasses that had progressive lenses in it. I’m not sure if I’d even been diagnosed with a cataract at that moment in time yet. Now it’s been almost 2 years since I had cataract surgery, and I don’t work glasses at all anymore. All right, I’m not actually complaining on that one. I could not have actually timed it any better to get rid of glasses, then right before a pandemic that would cause us to have to wear masks whenever we were out in public. That one has a slight benefit to it.

8 years ago I had just started a biologic, and as of this spring I’m on humira as well. Thankfully I have not had the health issues with it, even if I don’t feel like it’s doing a fabulous job yet. I feel like some people seem to be at higher risk for infections with biologics. But you actually went through quite a few before this happened, so it does seem quite surprising. I would not have thought that humira had a higher infection risk than enbrel.

Sorry that you’re coming back to us in this shape.

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I’m gonna start with your last comment first, Stoney. At least I’m back. I almost didn’t get back to anything, ever again! So don’t be too sorry for me! LOL! The day I ended up hospitalized, when I left the house looking for a COVID test that morning, I had no idea I wouldn’t be coming back home later that day. Opie and Dalton (my rescue dogs) were home all by themselves! And I rarely use my mobile phone. Most of my friends’ numbers were home on my landline system back at the house! AND Facebook decided at that time to make all postings you do “Only Visible to You,” but I had no idea!! 11 days LATER I figure that useless setting was turned “ON” and that any posts I made… NO ONE COULD SEE THEM! No one knew where I was, or why… OR that Opie and Dalton were all alone. Finally Messenger worked and I was able to reach two DEAR friends who got to my dogs, gave them food and water. A college-age son of one friend stayed with them up 'til the last weekend before I was discharged and got them over to their vet’s office who only board their own patients. Until I KNEW Opie and Dalton were safe and in good hands, I just couldn’t relax enough to concentrate on my own health.

I’m so thrilled for your kids!! But, are you as thrilled as I am?! Is your college child close to home or away? Not sure if I ever mentioned my 3 kids. Or if I did, you may not recall that they disowned me and are shunning me for having come out when Jim & I met… 9 years after their mom and I divorced. They’re I guess “devout” believers that my sexuality is taking me rapidly to hell in a handbasket, and can’t be near their gay Dad for fear of getting caught in the wake. I did get to meet two of my 5 or so grandchildren two Christmas seasons ago. A 5 year old grandson and a 2 year old granddaughter. Even got to hug them! My granddaughter whispered to her Mom, “He’s nice.” Within the next few weeks had dinners, first with my youngest daughter, then with both daughters. But soon calls stopped again and it was over almost as soon as it started. My oldest granddaughter is either just starting college, or just finished her first year. We’ve never met. (You should maybe be sitting when I say this next part.) I found out that I have one more grandchild than I knew of when my nephew called to let me know that my son Kyle’s obituary had finally been published and that Kyle and his fiancé had had a little girl 7 months before he was killed on the road. I knew he had been killed on the day of his accident and kept watching for the obituary. I was a single dad and raised Kyle myself from age 12 to 21. But there’s no mention of me in the obituary. When I had one dinner with daughter Katie I told her I’d really love the closure of knowing where Kyle’s remains are. She said she’d take me there someday. But I don’t see that happening.

Happier Topic: it sounds as if you and I may have had our cataract surgeries somewhere close in time. My first eye was prior to COVID breakout, (and prior to Diabetes diagnosis) and my second eye was just into the start of COVID! I was AMAZED with one eye done and the other Undone! Colors!! Brightness (both a blessing and a curse!!) I had to leave in darkness to get to a 7:00 AM follow-up appointment and the rear reflectors on cars looked as if they were bright as fire burning!! (That’s the blessing part!) But headlights, lightbulbs indoors especially fluorescent bulbs HURT my eyes!! I’m all used to it now. I opted for distance sight, and reading glasses still. If my fingers can ever again play piano and organ, I want my best site without glasses for when I play music.

I’m still in the same house but more than ever, I know I need to make the move that Jim and I never could accomplish. The quality of the hospital 6 minutes from my home is “less than adequate.” If it were only one thing that went wrong there for Jim, well that’s one too many. But there were nearly a dozen. I’m being realistic. I know I should be looking at an Over 55 community, with most basic essentials on the premises, and that will allow two pets.

P.S. In process of installing a smart lock deadbolt on front door. (My wrist incident happened 1/2 way thru installing it.) With this, I won’t need friends to try to climb through windows to get in for any reason… be it Opie and Dalton or myself. I’ll be able to unlock and lock it from my cell phone, or just send them entry code numbers to get in. No longer a mere nicety… pretty essential as my luck goes! It will also help in that my friend who first worked her way in through a window, climbing over a table, moving a fan out her way won’t ever again have to curse me out as she’s leaving my home and discovers that I totally left my front unlocked the whole time! BUT!!! In my defense!! I’m quite certain that was largely due to the same reason I had 3 (THREE) T-H-R-RE-E car accidents that day! ALL my fault. Turns out hospitals do that thing where they check how much Oxygen Saturation you have… and I had been driving (and not locking doors) with only 82% Pulse Ox!!!

Colin! So nice to have you back, albeit with some less-than-cheery news. But like you say, you ARE back. So a big WELCOME BACK to you, our long lost friend.

So sorry to hear about Jim’s passing, but I loved your story about the dream. Amazing, isn’t it, how can work towards acceptance of the most painful of life’s experiences and then see signs of success in such unexpected ways. I hope Jim’s memory continues to bring bigger smiles to your face, and more often.

Colin, your profile is gone because we changed platforms a couple of years ago. As it was, we are grateful for TJ’s heroics in getting the accounts all moved across. (It was something of nail biter, we almost lost the whole community.) Unfortunately, the profiles fell off the back of the truck. You can fill the missing bits in here (log in first): that way you can yourself to the community, or refresh the memories of the old timers like us. Is my memory correct in thinking that you have something to do with music? (Sorry if I’ve remembered that wrong.)

And to answer your question: yes, you can say you almost died. But you’re not allowed to say you’ve died. We’re glad that you dropped in to catch up. And we want you to come here often.

So nice to be in touch again

Seenie

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Seenie!! This is like homecoming week for me! I have to tell you ALL… I never stopped getting TJ’s emails. And every time I saw one I’d tell myself “I HAVE TO GET BACK TO THE GROUP!” So I owe a big thank you to TJ for all that work, and to the whole group for never giving up on me!

And yes, what a memory you have! Music has been a part of my life as long as I can remember. I’m an organist, pianist, music major graduate; worked for a synthesizer manufacturer and also the Wurlitzer Organ/Piano Company. (But I haven’t been able to play for about 8 years now. No, my fingers don’t bend and twist ‘as much’ as others’ do. And you might not notice the nodules on my knuckles unless I point them out, but they’re there. I can’t reach intervals like I need to, and the pain stops me from playing. If the pain wasn’t in my fingers, my spinal stenosis doesn’t let me sit at the piano or organ for more than 5 minutes.) As Jim and I were getting to know each other (over AOL!) we discovered that we’re both brothers in the same professional music fraternity… different colleges, different chapters, and a couple years difference between our initiations. (One of the first members of Jim’s chapter in Illinois was John Philip Sousa. My chapter in Miami initiated Luciano Pavarotti a few years after I graduated. And, the three founding members of the group Chicago are also our brothers! Never met them or Sousa, or Pavarotti! LOL!) We didn’t plan it, but the first time Jim and I met in-person (after knowing each other 11 years on AOL… so, we didn’t exactly rush things!) just happened to be on the Founder’s Day of our fraternity (a few years difference there too. It was founded in 1898!) When we were able to marry legally (not in PA, but we did it Connecticut) we chose the same date, October 6th for our marriage. I’m thinking of this now because it’s fresh on my mind. Jim’s and my anniversary was two days ago… as Jim said back in 2018, we had been married for 8 years legally and 7 years “illegally!”

You’ve been reading my thoughts recently, Seenie. Quarantine through COVID helped me realize something. IF it has to be, and IF there were anything such as a “good time” or “better time” for Jim’s passing, maybe November 2018 was it. First of all, he’d have been a sitting duck for COVID. His lungs were barely functioning. His heart was probably in worse shape than his lungs. We knew Bleomycin had damaged his left ventricle within 24 hours of that dose! (He was on the waiting list for a heart/lung transplant at the University of Pennsylvania. I don’t think he’d have made it off the operating table.) When COVID did hit, hospitals were turning away patients not actually infected with COVID. Jim would have been turned away. If at home, I don’t think he would’ve had the “benefit??” of the amount of morphine to allow him to take his last breaths at least in semi-comfort. And most importantly, if he were admitted during some points in the COVID crisis, I wouldn’t have been allowed into the hospital. When his doctors and I discussed my signing the ok for his palliative care, I came back to his side and told him. Through the bipap mask Jim said, “Do it.” We made that decision together. I wouldn’t have been there to hold his hand when he took his last breath. So yeah, I know now that the time was what it needed to be.

(I need to say these are GOOD realizations for me. I’m not saying these things in mourning or grief. I had to get here, but now they’re positive and wonderful things to feel and know.)

It’s only in the last few days around our anniversary that I’ve thought about Jim’s and my ever crossing paths, not knowing what was to come. (And I admit, coming as close as I did to not being here did A LOT!) But if some one, or some thing had shown me not just the “for better” but what the real “for worse” was going to be, I may never have known how deep love can really be. I may never known Jim’s strength or my own. I’d do it all again in a heartbeat.

For years, one my most favorite lyrics are by Janis Ian, the artist probably most known for “At Seventeen.” In her song “Some People’s Lives” she writes…

“Some people ask if the tears have to fall.
Then why take our chances?
Why bother at all?”

Now I know why, Seenie.

Hugs,
Colin

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Of course, Stoney! Especially just coming back to you all, and playing “catch up,” not only do I want to hear what’s been happening to you all, but sure I want to pick your brains for anything that might help me while in this limbo along my treatment or non-treatment path. Neither Jim or I have ever been “closeted” regarding our HIV status. Far more good than bad has come about for me (and him!) from HIV. (And I’m not being flippant about the virus overall. I don’t like to use the word “luck” for my experiences and I know some others still have horrendous experiences with their HIV.) I’ve been in some good places at good moments when drug trials took place. The Salk Vaccine began just a couple years into my diagnosis. I was treatment naïve which was one of the criteria. And I knew the name and reputation of Jonas Salk, researched the method behind his vaccine and it made complete sense to me. As far as I or medicine in general know, none of my infections have had anything to do with my HIV. I’m not, and have never been immunocompromised by it. My autoimmune system may be in overdrive, but my immune system side of it is beyond excellent. Again, I don’t take that for granted. For decades I’ve wished they’d come up with a way for me to give away CD4 and CD8 cells. I didn’t need to start antiretrovirals for a few years after my diagnosis. Even now, I’m on one of the less potent combinations we have. One doctor told me I have the immune system of an ox. (I have NO IDEA what an ox’s immune system is like, but I took it as a good thing! LOL!)

My glucose never once went low until after this recent hospitalization. Even at that, it was never in a critically low range. It was only low compared to where it had been for me. And far as high glucose levels, I can only say what my highest has been since actually taking my levels since diagnosis two years ago… but I once had a reading of 220. And I know EXACTLY what caused it. I had taken 10MGS of Prednisone 45 minutes before. So I drank a bunch water and moved around what little I could, and within an hour I was down within normal range. Most others I know with type II are up in the 300’s at least… some into the 400’s and 500’s. Most of them are on at least two diabetes meds and/or insulin. I’ve never been anywhere near needing insulin except after my Transsphenoidal Pituitary Adenomectomy in 1993. And that was only due to temporary Diabetes Insipidus immediately after pituitary surgery to remove my tumor. Since June, I only take a glucose reading maybe once every two or three weeks. I stopped Diabetes medication in June; no longer follow a strict Diabetic diet since June (except for things I came to love eating like brown rice and steamed seafood); and have gone back to drinking full-sugar Pepsi and Coke, it’s always high 80’s to low 90’s. It was the day I DIDN’T drink sugared sodas that I dipped into the 70’s. Again, nothing to be seriously concerned about at all, just that it’s not a level that I’m accustomed to.

And with Jim and Bleomycin, it’s one thing for a drug or biologic or any such substance to show deadly or damaging side effects. I KNEW the possibilities with Humira. Commercials all but spell out my specific side effects. But knowing that Lance Armstrong was warned 10 years prior to Jim being given it, that he’d experience exactly what Jim did… and that it’s contraindicated for immunocompromised patients… and that there is a prescreening test to measure a person’s sensitivity to Bleomycin that was not given to Jim… these are what piss me off. And even more so were his oncologist’s words and reaction to what it did to Jim the very next day when Jim went for his Neulasta injection: “Oh, you’re just one of those people who are sensitive to Bleomycin. No big deal. We don’t need it to cure your cancer anyway.” THAT’S the scariest part of it all. I was advised to pursue a lawsuit for wrongful death or something like that by another one of Jim’s and my mutual physicians. But honestly, Stoney, I knew I’d never get to dealing with my own grief and mourning if I went that route. Lawsuits such as that can go on and on and on. My own divorce/corporate lawsuit took 14 years to conclude. I know in my heart that even Jim wouldn’t want me to do that to myself. Yes, of course this was the most devastating and disastrous of medical SNAFU’s that Jim and I suffered from. But it’s not the only one.

Rest assured I’m not going to bathe in Diclofenac! :wink: And I don’t know if different pharmaceutical companies are permitted to vary their formulations of it. I assume they can just as any generic tablets, capsules or powdered medications can vary “non-active ingredients.” Or, if there’s a certain concentration that is permitted without needing to be listed on the label (just as some levels of insects, rodent hairs, and animal feces are permitted in boxes of cereal!) But looking at the ingredients on this bottle of Diclofenac, I see only: alcohol (11.79%), dimethyl sulfoxide, USP, glycerin, propylene glycol and purified water. (And I’m honestly not being a smart ass. I realize there are some things I may not know added to this stuff. I do know that Aspercreme Arthritis Gel as well as other generic diclofenac gels contains Diclofenac but at a 1% concentration, compared to my 1.5% prescription strength.

I’ve tried CBD oil. And I gave it a few months chance. My pain management specialist who’s also the head of anesthesiology at the hospital from which I was just discharged wanted to me to try it. And he claims that the one that he uses is from one particular pharmaceutical manufacturer lab tested for consistency and potency. I wish it had done at least something for me. He has done two versions of nerve blocks into my spine that did give amazing relief almost immediately, albeit temporary, meaning two days of relief. Of course they only affected from my lower back downwards. They’re actually required steps by insurance coverage to verify whether or not a patient achieves a certain percentage of success from them. IF these accomplish I believe 60 or 80% relief, then a patient is eligible for a Rhizotomy. I had at beyond the percentage of success they’re looking for. The only reason I did not go for my Rhizotomy at that time was my total distrust of that insurance provider! I’ve since switched providers an feel much more confident that I won’t see a an invoice for thousands of dollars months after the procedure. I will be going for that procedure ASAP.

Two weeks ago I saw my rheumatologist sooner than I had been scheduled for. Since no longer doing Humira, and on nothing actually treat my PsA, pain is going to such increased levels and expanding beyond areas I had been feeling it. My neck, shoulder blades and out to shoulders are the worst of it. I can’t find positions for sleep, I have far less range of motion turning my head. One night I was in so much pain there especially, that I went searching regarding steroid injections in those areas. I’ve figured if it’s all going to get worse, at least let me minimize my pain as PsA progresses. Whether she’d do them for me or if she preferred I see my pain management specialist for them. I’d do whatever she said, I just needed to have her blessing for it. (In the same way, I always seek my Infectious Disease doctor’s blessing for anything going into my body. She too wants to KNOW that anything she prescribes has his blessing also.) She totally went with me on my request, Said she could pinpoint my trigger spots and so she did!! Two injections just below my neck, between my shoulder blades. This had to be the magic elixir of the gods and godesses! It was just nice walking out of her office knowing she did something to try. A few hours later I KNOW it’s working. By bedtime my pillow felt like a cloud and my head was finally able to sink into a position that I don’t remember anything else 'til morning, waking up from most amazing sleep I can ever remember! And it just kept getting better. Levelled off in about two days and stayed at that level another 2 or 3 days, and now has faded some, but it’s still better than it had been!!

As far as doctors and faith in them goes, Jim and I shared another trait. (And lest it sounds as if he and I agreed on EVRYTHING, no! LOL! But in this we did!) We don’t suffer fools lightly. We’ve seen medical idiots… one appointment at most. I’ve walked out on a rheumatologist and his PA. They didn’t last 20 minutes. We’ve both fired nurses who were tending each other in hospitals. He’d show them his power of attorney me, or I’d show mine for him. When an ER doctor accused me of starving my husband because “his temples didn’t get this sunken overnight” they found another ER doctor quickly. This is why we have filters. Sometimes a few coffee grinds get through. But they float to the top and you just take them out then. :wink:
Colin

Hey there, Poo!

Yeah, I’m not going to deny or downplay those 11 days, or the days leading up to them, or the days after them even to now and ongoing. No, I’m not losing blood, or digesting my own blood, or dropping hemoglobin by the hour, or barely able to breath. My oxygen saturation is back up in high 90’s. But I sure am feeling the lack of any good that Humira was doing even while the negative side effects were going on hot and heavy. And just today I know that another facet of my autoimmune issues has moved from “I hope it’s not happening again” to “ohh yeah I KNOW this is that again!” I have skin lesions or sores that have broken out in sort of flares over the past 8 or 9 years. A week ago I only had a few on my scalp that I thought “could be” those same lesions but enough wiggle room to not be certain and still hope they’re not that. But they’ve multiplied on my scalp, spread to my neck and today breaking out down my back again. I totally forget the name of these sores. They’re not psoriasis. I do have a dermatologist. I had cancelled my last appointment with him right after my wrist surgery and was still on prescribed Oxycodone (which I do not like taking! It’s side effects hit way more now than years ago. I haven’t taken a narcotic in about 7 or 9 years now.) This is just one more part it all that’s goin kinda haywire with nothing to control it. I have Augmented Betamethasone that has worked previously. But the lesions seem to love the stuff!! It’s like fertilizer to them now.

But I’ve digressed from your suggestions and questions where you’ve been sweetly trying to help me. I’m not so sure I can say and ask all I want to tonight. It’s turned into one of those extra-intense nights here. We’re under a National Coastal Flood Advisory for tomorrow through to the next day! I’m not very near the coast. And I’m 13 miles from the nearest river. And we’ve gotten no additional warnings since early this morning. I honestly doubt any flooding will occur, and I’ve never been concerned that they’d reach me it they do happen. BUT something is still brewing up in the atmosphere that has my pain levels jumping up the scale. But I wanted to reply to you at least some. And probably… more like definitely want to clarify that I am so not blaming Humira for all I’ve gone through. If my words gave that impression, I totally apologize for my wording. If I realized any blame appeared one-sided I would have found another way to express my feelings. I don’t have those words yet! But thank-you for pointing this out. They often say, “I’ll sleep on that” to mean they’ll let something sink in and become more clear to them. Well I’m going to literally sleep on that! :wink: It’s now 2:26 A.M. and my muscle relaxant will soon make my brain a little less sharp than usual. And Dalton Dog can sense when something isn’t right in me. (In all honesty, Both Dalton and Opie wouldn’t leave days before the hospital admission. And when I was discharged and home with them again, they almost “took shifts” all night long. I know this may sound crazy, or be things that only trained companion dogs have the skills for. But the other time they did similar was when my glucose level went into tjhe 200’s for the first and last time. They sense or smell or detect SOMETHING my body is doing or giving off that just isn’t what something they’re used to. So I’m off to bed and cuddle with my home life savers!

To Be Continued!
Colin

I hope you’ve survived the night unscathed. I too have a dog who has trained himself to be an assistance dog. He’s called Freddie. He helps get me up off the floor if I fall down as sadly I can’t get up all by myself anymore. And he also sticks to my side if I have to walk through a muddy puddle or track. Dogs are simply the best frankly.

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More later but just a little response!

Jim once did a sermon titled:
“Why I Believe In Dog”

Hey again, Poo…

I was just thinking how to word things differently, so I went back to first note to see what I can improve upon. Looking at my words again now, I think I pretty much spelled out that I WASN’T blaming just Humira at all. I totally added that my NSAID Etodolac was a big part of it also:

“The whole mess wasn’t only Humira, but I MUST say… Humira is a wonderful biologic. I knew the POSSIBLE side effects (although never dreamed these specific ones!!) Also, my NSAID Etodolac had its part in it too. Etodolac is what tore up my stomach causing the bleeding ulcer, AND opened me up to H. Pylori as the major infection in my ulcer.”

I don’t think I can say it much differently!

(I did see you latest note to the group. I definitely want to respond to you there too. I’m trying to get back into the groove of seeing others’ posts and become more involved overall and not just in my own little corner.)

Hugs ~
Colin

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