Up… Down… Up… Okay, Up. Go!

Much has happened since my last post. I’ve seen my Ophthalmologist and based on that had to see the Neurologist again. The Eye Guy said the visual disturbances I was having was not an ocular migraine but that he believed blood was not getting to my brain properly. Hmm…

I was seeing the Neurologist because my Factor 8 clotting factor was off the scale. We checked it again, it’s still high, but because there is zero history of venous clotting issues and I tend to bleed a lot post IV pokes, biopsies, infusions, etc. She’s not worried. This is good! No blood thinners. Yay! She just doesn’t know what to think about the visual stuff (which, by the way, were quite geometric and colorful, psychedilic actually). If I have more problems she’ll reevaluate. They looked kind of like this only a full half circle in both eye independently. The bold black like was neon yellow, this happened twice.

We went over the stroke again. Here is what she believes happened. I had a fall quite awhile back, year and a half, two years? Anywhom… I hit my neck really hard falling into the bathtub… backward and HARD! She believes this was the initial trauma to my neck that started a very slow bleed in my right vertebral artery.

That slow bleed backed up with cells and other stuff and started building up and blocking off until a clot formed that occluded the entire artery. Quiet stroke #1 in January, serious stroke in February.

I’m doing really well post stroke though. I’m lucky. I have been having a hellacious time though with my body- neuropathy, fibromyalgia, RA, all were screaming pretty loudly since the stroke. I was pretty depressed about all of this pain!

Ever the optimist, though, I decided to do some research and decided to not just go gluten-free, but go all out and do the AIP diet. I felt like I was trying to save myself, a last ditch effort. I talked about this in my last post. So, August 15th I started on a few day bone broth fast and started the diet. I had to buy a lot of strange new shit… stuff, real health food stuff. But I wanted to go all out and do it right!

Almost by the end of 2 weeks I could actually see the inflammation leaving my face. I looked different. I shed 5 pounds. The very uneven toned facial skin seemed to be more even, complexion nicer. I didn’t use my cane at all around the house. It stayed next to my bed. My neuropathy and RA had vastly improved. AT TWO WEEKS! The best part??? – my stomach and gut didn’t hurt… and I was eating vegetables that used to send me into massive discomfort. <whispering> I’m having the first normal poops in years! Hey, it’s a gut healing diet!

So then what happened?

I relapsed!

I know exactly what happened. A few days before I was getting so hungry, wanting and needing some comfort food. I did my due diligence and went to main health site I was using who suggested when this happens to eat more starchy vegetables like sweet potatoes, squash… I did. And then… then those donuts were right in front of me. Later I made mashed potatoes, and the next day I had half a sandwich! Schneikies!

Aight, ‘den. <sigh> I’m back on it. I decided when things get really rough I’m going to make tapioca pudding with coconut milk. Did you know tapioca came from cassava? A tuber. Mind blown. I can also use a little monkfruit to sweeten just a tad.

It’s also true, you know, now that I have this awareness I can fight off the urge. I’m also going to start a food journal. I know, I know, some of you are surprised I’m not doing that already. Well… I’m a little slow. This is the food tracking page I’m going to use. And it’s also the website that I go to first. There are several others I look at too, but this is the ONE! https://autoimmunewellness.com/the-role-of-tracking-on-the-autoimmune-wellness-journey/

I persevere.

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Picking Up The Mantle

Making change. It’s time. A 6-year cancer survivor and life has been hell since, medically speaking. Hell. HELL! The last year and a half… doubly so…

That said, I’m feeling a bit better and it’s time now to choose a better life… again. I’ve done this so many times I can’t count them. It’s all good though, we have to do this sometimes. It’s really more like saving my life because something has to change with the path I’m on. I keep getting medically accosted and I’m just tired of it. So, I will do what I can with what has, and what will come along. I had so many plans at the start of the year that all crumbled because of 2 strokes. It all got pretty dark for me for awhile. I’m doing better with tiny lingering after affects from the strokes that are acceptable if they stick around.

I have to work on plysical strength. I have to heal my stomach (the microbiome is a mess) and do what I can to lower the inflammation in my body. Is this even possible? I have zero idea, but it’s worth a shot at trying. I have nothing to lose and a lot to gain. So there it is.

I just completed my two Rituxan infusions and began a bone broth fast on Saturday the 15th. So, as those B-Immune cells are croaking within me, I’m also cleaning out the system & gut. This will continue with the Autoimmune Protocol diet.

I’ve been gluten-free many times but never on the AIP diet. I’m going to do that after a few day fast. I’m trying to gather recipes for the 30-day recommended protocol. Those are weird, okay? They are. We’ll see how I do. I will do my best. I’m likely to be more simple in my approach… don’t need to do complicated recipes (I can’t stand all that long anyway). I’m not too fearful of not being able to stick with it, but, variety is nice, and it’s needed so I WILL be trying a few new recipes.

I wear written declarations of commitment in a tiny prayer box, along with St. Raphael (He hung out with me during cancer and the long treatment). I have always liked amulets for focus.

I’m also hoping these changes help my brain a little, I’ve had some serious moments of forgetting and speaking. The speaking issue has been infrequent – that’s good! The forgetting… ah… I haven’t a clue how to even finish this line.

Wish me well, I’ll let you know how I do with this!

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Stroke~Sleep, Fatigue, RA & Fibromyalgia Mash-Up

This is mostly for my seester, and others who want to know…

I have tried to do this for over a week… possibly two… can’t remember. Pretty sure it’s two. I’m staying home, staying safe… except for various doctor visits. “The Team” that was going to review my MRIs, CT Scans, and hospital visit from my stroke stay did so. I met with one of them and a Cerebral Angiogram ensued. They found the right vertebral artery was completely obliterated on the right side. Gone. Nonexistent. But, the human body in its vast wisdom and desire to survive opened up the left artery to work for both. It’s open and clear with no clots, no plaque, a completely open pathway to supply blood to my brain. It stepped up and took over for both. Yay left vertebral artery!

I had a little bit of a hard time with the angiogram… it’s so hard to lie flat for hours with RA and fibromyalgia. That was on April 24th. I haven’t been able to walk easily since. I’m much more dependent on my cane and my left-hand hurts worse because of it. Let me be clear~

Pain. I’ve never hurt so bad. I thought this was all RA or Fibro. No. Did some research and found:

“Let’s start with some basic definitions. Central pain is due to an injury in the central nervous system (brain or spinal cord). Any pain that occurs in the peripheral nervous system (anywhere along the nerves) is peripheral pain. “If you crush your arm in an accident, you are at risk of developing severe peripheral neuropathic or nerve pain,” said Richard Harvey, medical director of the Center for Stroke Rehabilitation at the Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago). “If you have a stroke or a spinal cord injury, you may develop central pain. https://strokeconnection.strokeassociation.org/Spring-2017/When-Survivors-Are-Hurting-Understanding-Post-Stroke-Pain/

There it is. Explanation.

That aside, then there is the incredible sleepiness and naps that block out a huge part of the day. I never sleep less than 4 hours during the day and sleep fine all night. Those naps? I could sleep much longer if I didn’t have some sort of sense. And it’s weird because it’s like my body just shuts off. Shuts right down and I have to lay down before I fall down. This has happened since the stroke and usually about 2 times a week. Again, found this:

“Stroke survivors often experience the symptom of excessive daytime sleepiness (EDS) in the early poststroke phase. The estimated prevalence rate of EDS in stroke survivors ranges between 18% and 72%, depending on the method used to measure EDS and the type of stroke. Despite the wide range of estimated prevalence, there is an agreement that poststroke EDS may persist and become a chronic problem in 34% of stroke survivors and continue for at least 6 months after stroke. EDS affects a stroke survivor’s daytime functional performance, lowers overall well-being, and impacts cognitive functioning. It is also an independent risk factor for stroke and contributes to an increased number of driving and industrial accidents”       https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6344831/

EDS, who knew?

Life has been altered. I try so hard to move forward and move in spite of myself. I’m so tired though (those of you who know me know all the shit I’ve endured and risen above). Today I’m tired and weary… but I may be laughing hysterically from kitty vids in an hour. I love DailyOM and have downloaded 2 classes to start on Monday, maybe Tuesday (haha). The point is… I haven’t yet given up or gone under. Just trying to push through. (Yawn)

 

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Post Stroke

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It’s a month past my stroke… or almost. This has been just a little bit scary and I can’t say I’m unscared yet. The final diagnosis is Cerebellar Infarction & Stenosis of the Right Vertebral Artery. How’s that for a mouthful?

I suppose the remaining effects of the stroke are: incredibly tired and sleepy all the time. Mild headache and neck ache that is ever-present. Bummer. Memory is worse than bad.  Fine motor skills have a little tremor, I think that’s getting better, seems to be coming and going. Still… the vertigo. If I can even find the words at all they sometimes come out as something else… not related. Sometimes they are funny moments. You gotta laugh, am I right? Yes. I’m assured all of these things will get better with time. Recovery from a brain injury takes time… and sleep. But… I have a snoring cat and a David… (sigh)  I did see the Ophthalmologist who said there was no eye damage from the stroke, but my vision has gotten worse because of it. We’re giving it a couple of months to see how healing affects my vision and go from there.

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I saw a neurologist last week, I really liked her and she was very encouraging. This is apparently not an uncommon occurrence. Different from what I was told in the hospital, my stroke was a tear in my vertebral artery. The first mild stroke was January 13th and probably caused by the horrid coughing I had been dealing with for months. It caused the tear and my body’s response to heal it got it bunged up with platelets and caused the full stroke about a month (plus) later. So weird, right?

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“Vertebral artery dissection (VAD) is a flap-like tear of the inner lining of the vertebral artery, which is located in the neck and supplies blood to the brain. After the tear, blood enters the arterial wall and forms a blood clot, thickening the artery wall and often impeding blood flow.

Complications: Stroke, subarachnoid hemorrhage
Symptoms: Headache, difficulty speaking”
I didn’t have any clots like mentioned above… right now there is a radiology-neuro team going over my entire hospital record and they will have the final treatment plan. Currently, they have me on 325 aspirin daily, and Lipitor added to the med regime. That along with my own dietary changes to heart-healthy and low fat (dammit!) They will also do a CT scan to make sure everything is healing properly. No more Ibuprofen to help with my RA… and I have come very close, nightly, to a major flare-up. Tylenol just doesn’t quite cut it.  I had one infusion last week and another one next week, I’m going to hope REALLY HARD that will be good enough… because I can barely walk in the evening because of the pain!
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That’s him… —> that little brain-stem green guy right there… that’s the culprit! Just another bump in the road, this guy. Current goals are trying to maintain some strength, especially in my legs that are still pretty wobbly! I’m a little fearful as you can imaging doing much without hearing from this “team” first. The neurologist said exercise is okay as long as it’s slow and gentle until we get the whole picture.
To most people it probably seems like something you don’t give a second thought to… but… there are so many things I have to work on to remember… like:
I have to remember to eat, drink fluids, take meds, get to the bathroom on time (sadly so, yeah… some disconnection there, but no accidents yet… close calls only), make appointments, just do everyday stuff. It’s hard! Yesterday I forgot to eat… so I also forgot some of my meds, by evening I was ready to faint all over the place! Some days I forget to drink. It’s a little hard remembering all this, overwhelming! And you just can’t believe it’s happening to you!
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“Kintsugi (or kintsukuroi) is a Japanese method for repairing broken ceramics with a special lacquer mixed with gold, silver, or platinum. The philosophy behind the technique is to recognize the history of the object and to visibly incorporate the repair into the new piece instead of disguising it.”
I’m.  That.  Bowl.
I wear my breaks well. Well, if I don’t right now, I will. I just need a little more time. I have to say I have a wonderful health care team. Such a compassionate group, they bring tears to my eyes.
On the road to recovery!
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STROKE (X2)

Yep. One of those BIG hiccups!

Well, well… I’ve been quiet on FB except for a few friends. The reason why is because Monday night I had a stroke. I didn’t know it at the time. I thought what was happening was simply my Vertigo that suddenly got really bad. I started vomiting and could not stop. My vision field would not stop moving. I had a headache, trouble tracking with my eyes, shaking so, so bad… and I could hardly walk. First the CT, uh oh… we see something, need an MRI. Then the news. I had a stroke, and it was my second one. The first probably occurred when the Vertigo started.

Who knew?! There was no typical left or right-sided weakness. I had the same smile, my grips were the same. So I got to stay at Providence St Peter Hospital while they figured this all out. I had a beautiful room and was taken well care of. This was my view.

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At night, this was my view:

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I did have a constant headache and still do, though it is going down a notch every day. Vertigo was/is not too bad but still present. The accompanying nausea is still alive and well. PT tells me that it is because of my Nystagmus. I have to do head exercises, gaze stabilization, habituation exercises… all to retrain my brain. Monday night when I could not walk has stabilized. That started getting better almost right away.

My official diagnosis is Ischemic Stroke, Embolic. Meaning in me specifically, a (probably) plaque fragment formed in the vertebral arteries (back of the neck) and moved up into the brain and blocked blood flow. This is interesting… when it can the body finds ways to keep blood flowing and one of the arteries dissected- meaning it just made another path to get blood to the brain. I don’t know about you but I think that’s pretty cool and I am very grateful for it. They found no clots. Probably between all the CT’s and MRI’s I was in a tube for at least 2 hours getting pictures. They did a pretty dang thorough study. Oh, and geez, I have a bunch of Heparin bruises on my stomach and took off a million stickers from the heart monitor I was on and from the Echocardiogram. Fun stuff. I’m actually having trouble typing, thank god for backspace and Grammarly.

So what’s next is taking it a bit easy, change in meds to include aspirin and a statin, heart-healthy diet. meet with PCP, eye-doc, see a neurologist, etc.

During this time I had received my “Happy Box” from “Me and My Big Ideas” and I’m excited to do this, though now it will be for an unintended purpose. Who knew the cup I got with my box would mean so much.

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52880607_10156561052546896_8407398297236406272_n.jpg Ramona… that’s me.

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January 2020

There’s some good news and there’s some other news. This is a quickie update:

I had intended to do some kind of update at the end of the month, so here it is.

I had quite the plan for this new year. I had started my gluten-free diet as I said I would and it took several days to get it all out of my system along with the inflammation it caused. Still have (my body is so insistent!) some but a good portion departed. Joints are feeling better.

I went 2 full weeks without sugar!!!                     images.png

Can you believe that??? I wasn’t so sure I could do it. I’ll say this for it, I slept better, really well. Over the month I lost 15 lbs. recently I gained 2 back. Bad me for some candy relief… and gluten relief… but I’m back on the wagon! You slip off you get back on. Hopefully, those slips will get further and farther in-between until POOF! Gone! The RA is better and this is SO GOOD!!!

I drove from home in Olympia to Tacoma today for a yearly Oncology checkup. It’s my 5-year visit.

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On the way, there was a beautiful surprise of the Nisqually Valley and Delta socked in with fog. The layer hung over it and once I was in it saw a Heron fly over the highway toward the delta where they like to hang. When I came out of the fog Mt. Rainier was out and shining a welcome! The auspicious trip, huh?

And then I came into Pierce County and had several slowdowns until I reached Tacoma proper. I have a regular followup Oncologist, but this visit was with the Oncology surgeon which is just once a year. We talked, she had done her homework and knew all of the things that had been going on with me lately (and there have been a lot of things!) and asked many questions. She did an exam and found a lump in my left axillary (armpit), and also unusual changes in my right breast (the cancer breast). It felt different to me and was very tender and she confirmed it was different. So… (sigh) bilateral diagnostic mammogram and ultrasounds on both areas, she wants them within 2 weeks. Yeah. We’ll see. She asked if I was okay… how was I feeling about this… I said I had so many things thrown at me over the past 5 years it’s just… another one. If it’s nothing- great. If it’s something.. I’ll deal with it.

I don’t have the energy to worry about it, you know? It doesn’t change anything. Wait a minute… reminds me of a quote… hang on…

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It’s funny how the body coordinates what’s going on in it. I’ve noticed over the years that I can be racked with RA and Fibromyalgia pain, then get the flu or cold and suddenly my body switches focus and the other things take a back seat. That’s kind of what’s happening now. I’ve had a very productive cough for 5 months- yes, I’m seeing a pulmonologist, but once again the RA takes a back seat. I’m not complaining, I just find it interesting. If everything happened at once… well… I don’t want to think about that one.

We go forth, we persevere, follow our goals, stay strong, take care of business, etc., etc….   Thank you!

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Focused and Extra Sparkly!

Baby, I have plans! The New Year is Coming! Goals, Goals, Goals (Or, you can call them resolutions)!

I’m going to say this very quickly and leave it behind: it’s been the suckiest year EVER! So much physical pain from RA, Fibromyalgia, Dental, and the mental anguish all those things have taken… it’s been tough. I probably had more bad thoughts than I’ve ever had in one year. I always know I’ll get past it though and that singular thought is what helps me pull out of the dark place. I hold the title of 2019 as Queen Procrastinator, Lazy Butt, Griper-girl, etc. BUT! I’m ever the optimist as well. So I’m putting that to work.

I’m now officially Pre-Diabetic. Doc wanted me to go on Metformin. I said NO! And I went for 7 days with no sugar and very few carbs. You know what came next… FAILURE! The food addict in me… it will assuredly be my downfall if I don’t wrestle control.

2020 is the year I really put the effort out, and if that doesn’t help (and I’m pretty sure it will) I’m “hangin’ jock!”

Alright then, effort forth, and you can call them resolutions or goals but it’s:

  • Daily workout- I’m still working on the full weekly plan but it involves different parts of the body every day. Kind of like what body-builders do, except its for the infirm! Ha! YES! Unfortunately, that is me!  I have a workout journal that I’ll be doing along with it. I’m on it! Full dedication. I’ll be going slow and smart though. My plan for days that I can’t get up the excitement is to put on some snappy music and dance. Music is life! It will likely get me in the mood.61hmBjHfnqL._SX442_BO1,204,203,200_
  • I am going to follow the Anti-Inflammatory diet. This author also has a blog site, she’s a Dietician, and hello, a Ph.D. “30 minutes or less” meals appeal to me because I currently can’t stand for very long. I had a hard time deciding between Keto and A-I, but the latter won out. This will, of course, be with NO gluten as well. None. I think I’ll do a 2-3 day bone broth detox just prior.
  • I’m going to do another Vision Board and instill a lot of Law of Attraction affirmations. They really do help SO MUCH! And the vision board helps to keep it in my head every single day.

It’s been a year of a variety of things happening TO ME and that just pisses me off you know? It’s also caused me to go into this weird mode of not wanting to move because of all the pain. That’s such a bad mistake and I can’t believe I did that to myself. It’s only made the hole deeper that I have to climb out of.

I’m getting old, you know? I’m not ready to be in a wheelchair. So I have to do everything within my power to change my body’s health and my attitude. It truly IS all up to me.

I’m so thankful I woke up today, and will in the foreseeable future. I’m thankful for my ever-supportive partner. He’s a very loving guy and my personal eye-candy. He works so hard and does so much, and helps me so much. Thank you, David!

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I’m thankful for my friends and though I may not see you in the flesh as often as I like just know this year has been especially rough and everything has been so difficult for me. It’s hard to get around…

I just have to give a special shout-out to 4 friends, you know who you are… J, T, C, A. These women are struggling with cancer and other serious health issues. I love each of you, love your spirits. NEVER GIVE UP! Live your life the best you can, for as long as you can. Live your lives on YOUR terms. Most importantly find things that make you belly-laugh… HARD! Watch baby goat and kitty videos… that does it for me. I know… animal slapstick, what can I say… it makes me laugh.

WHATEVER YOU DO, ALL OF YOU:

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Adapting

“Some people are very adept at keeping their pain hidden.” Temperance Brennan- Bones

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Pain is a bitch. When you have an invisible illness people cannot relate to what you’re going through. Nor do they know when you are in pain unless it’s severe. We adapt, we hone the skill so that our pain is not so easily visible to others. It’s something we just do. They think we’re fine. We smile and they think we’re okay, or doing better. Meanwhile, inwardly sometimes screaming just to cope. Interesting, isn’t it? The dichotomy. Conversely, if we laid it all out there all the time what a miserable bunch we’d be and who would want to be near us or talk to us? Or, perhaps they would think we’re overly dramatic and that’s tiring and boring. (sigh)

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This truly has not been a good year for me (see the last post) and it has continued. The Duloxetine for my Fibromyalgia, though it did so many WONDERFUL things, ended up causing severe and almost incapacitating palpitations. We lowered the dose and they have calmed down but are still there in a minor way especially in the evenings. I’m currently on 15 mg of Prednisone… for a knee flareup that will NOT resolve. I get down to 5 mg on a taper and the knees flare again, and boy I don’t like that… being on the Prednisone I mean. It lessens the inflammation and thus the pain… to a degree. What horrible choices we have to make, huh? I can barely walk or navigate in my own apartment. The pain is so great when trying. ARGH!!!

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I keep myself busy with projects large and small to help distract myself and to keep moving, but in the last week could not even do that. I did a lot of sitting. Just too painful to get up and even down. I feel completely stuck. I don’t like that feeling at all. My world is small enough as it is, I don’t need additional things that want to make it even smaller.

I cannot walk with any comfort at all. It’s painful. It looks horrible and like I can’t walk… duh. My friend Abigail cringes when she watches me walk (yes Abigail, I saw you grit your teeth). I’m relying heavily on my cane and may have to drag out my walker. Geez… it’s like a slow slide into giving up life as you know it. This was my recent post on Facebook and I’ve been living this for the past 5 years as post breast cancer treatment (and age?) has caused my physical well-being to be on the downward spiral.

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And yet… I am hopeful. Because I do exactly what that meme says… I try to think positively most of the time, try to feed my brain with positive instead of the negative. That’s an old counseling technique- thought replacement.

UPDATE: I usually do my blogs in one sitting but this one has taken days. Anyway, I saw my rheumatologist yesterday (Friday). I gave him the entire knee scenario and hobble extravaganza. He wrote down everything I said dutifully. Finally, he looked at my knee. Now, I didn’t think there was much swelling really, but he said: “whoa, oh yeah, there’s a ton!” I apparently make a lot… way a lot…! So we prepare for a cortisone shot. He pulls out two syringes of synovial/inflammation fluid and injects the cortisone.

We talk about RA & meds (this is a ruse to keep me sitting there for a bit). He runs down the list and corrects me on some misinformation I had, I need to educate myself all over again. Brain fog, forgetfulness? I dunno. Since the HUGE brain fog episode in June/July, I have lost info and am more forgetful. I also need to look at what I can do to get better sleep without meds (that’s my choice).

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My Plaquenil helps with the inflammation, the Methotrexate helps with the Rituxan. Everything works in concert. We talk about my knees. I ask if I’m going to need replacements in the future. He smiles. I can have them at any time. I have no cartilage in either knee, I just have to decide when I’m tired of getting shots, it’s entirely my call.

GULP!

I get up and I’m still in pain, though I also know that will get better. I need the cane to walk out and usually with my right knee I don’t need the cane at all upon leaving. This left knee thing came on SO suddenly it’s insane! Attacked by a knee!

So, I’m to taper down my Prednisone immediately, no prob. For myself… shit… go through my lists of food again that help inflammation and go GLUTEN-FREE!!! It has such an impact on me and I’ve been doing this since last November, YES, almost a year. What the heck. I obviously need to work on the headspace too.

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2019 Thus Far

I have a few friends wanting to know how I’m doing so this is for you. This is the easiest way for me to tell this story in one blow, and also to chronicle it for me. No pretty pictures, just the straight skinny.

We are slightly beyond the half year marker for 2019 and okay, here it is, so far, this year has sucked. That said, here is why-

January, but really, starting in December I began having mild headaches that bloomed just a little more in January along with a cold that went to my lungs. Infection & antibiotic- round 1. February brought a little more headache and some jaw pain. Now, it’s important to note here that I’d been in a gluten slide since the holidays and it often presents with jaw pain (RA in the jaw, actually multiple sites), and this is what I thought was the problem. By the third week of February, I suddenly realized it was not gluten but a toothache! By the time I realized it I was in full-on pain and in need of an emergency dentist visit! I had a tooth that had cracked all the way down and there was an infection. Antibiotic- round 2.

March brought 2 back to back urinary tract infections (apparently caused by my cancer med- Exemestane). Antibiotics- rounds 3 & 4. End of March was my scheduled biologic for my RA- Rituxan. Just a few days later another tooth infection. Antibiotic- round 5. Spoke with my RA guy and we canceled the next Rituxan infusion until my tooth was taken care of… but I had to wait 2 months because of, well, no immune system. And yes, another tooth infection with a really great abscess. Antibiotic- round 6.

I finally made it to the oral surgeon. Let me explain why this happened. I have RA, Osteo, and Inflammatory arthritis in my joints. But my bones, my bones are freakishly strong. It’s my superpower. They are stronger than normal, the other end of the spectrum in spite of all the meds that compromise them, in spite of having done chemo and radiation. “Freakishly strong”- that’s a quote from the doc! But, I digress… what this means to my dentist is that she didn’t want to touch me. You know, medical history, no immune system, and a mouth where all my teeth are tightly cemented to my strong jaw bones. We were talking about wisdom teeth too, and another cracked tooth (thank you chemo), do it all and be “under.” She said I didn’t want to do this awake! Wow. Okay.

I finally get to see the oral surgeon and discuss a plan of action, the tooth has to come out now, even with the abscess (still), which is not normal practice, but it’s never going to get better until it’s out. And we did all this the very next day. Antibiotic- round 7, plus an antibiotic mouth rinse. The two broken teeth had to be cut out with stitches running down nearly under my tongue.

What ensued post surgery is almost indescribable. It’s mid-June. I had my surgery instructions in front of me to read nearly every hour for the next few days because I couldn’t remember what to do- seriously from hour to hour. I had Opiates that I didn’t take other than the first day because they made me vomit, I popped stitches the first day. Ibuprofen did the job well enough anyway.

Autoimmune system diseases have this interesting way of taking a back seat when other bigger things are happening in your body, and mine did. After a week or so though, things are coming back, aches, pains and getting stronger with each day. Head to toes, every joint in my body was freaking out! I could barely move. In fact, the 3 days before my RA appointment on July 1st I was not functioning. It was too painful to move. I did nothing. I couldn’t remember anything, much worse than anything I’ve experienced. I was utterly traumatized.

I walked in with my cane for my RA appointment and slumped into a chair completely exhausted from pain- joint and muscular. I explain what’s been going on and I can’t think. I haven’t been able to think for a couple of weeks. I can’t stand on my legs very long. New swellings in my ankles… I’m crying I’m so miserable. He does joint checks, I’m in an RA flare-up, my entire body!!! Then he does a Fibromyalgia check and for the rest of the appointment, I’m in pain at every poked spot. He’s a thoughtful kind of guy and I’m a good reporter, so we made a plan of action. I don’t remember all of that discussion but I went home with a plan and new script for Prednisone which is used for flare-ups, and he talked about my Fibromyalgia Fog which I’ve never experienced before. The Fibro I’ve had since childhood (before it had a name). He put me on Duloxetine which is an antidepressant (I’m not depressed) but is also used for chronic pain, neuropathy, and helps with Fibromyalgia brain fog. It’s a Serotonin/Norepinephrine drug. I’m game.

The first 3-days on the Duloxetine I was amped, but I’m also on 15 mg of Prednisone too, I had more energy then I’ve had in a year… or two. My muscle pain is quieting down. And my brain is starting to clear. I think you can imagine how amazed I am.

Better living through chemistry, huh?

I have my Rituxan infusion tomorrow and then the follow-up on the 26th. I’m feeling hopeful again. I have so many conflicted emotions about medication, but I would be dead without some of them and wanting to die without the others. The body does not always heal itself. It needs help sometimes.

I’m good with that.

Love ya!

Rrrr….

 

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My Constantly Examined Life

And that’s a good thing.

The unexamined life is not worth living.” Socrates had it right, at least in my book. He also said, “Know Thyself.” Granted, I may overly examine but who’s to say what’s too much? I suppose I feel a reexamination is warranted every single time life slings mud at me. And sometimes my commitment is for shit, but I’ll keep on, vary the program a little and go forth. Or, take on a whole new program I think might fit me better.

Because of some recent issues, and I’ll get to those… I have to explain that during my chemotherapy for breast cancer 4 years ago I had pretty severe chemo brain and aphasia. Words and whole sentences would not come out of my mouth. I could write them but also had difficulty with my fingers (chemo-related neuropathy). Ironic, huh? It was a highly frustrating time as you can imagine. I made a deal with my partner and friends that I talked to regularly that they would wait patiently until I could spit it out, or at least give up- because sometimes those words were just not going to come out. My chemo-brain still exists but has improved over time. I still have days, several at a time usually, that those words won’t come… and it’s worse in the evening. My partner says these times seems to come around periodically. I haven’t figured out a pattern yet, maybe I’m tired, maybe there’s a lot going on. ? I’m on a 6-day’er now. Last night it was a short sentence and I tried 4 times to get that sucker out! I’m already at an acceptance phase with this issue, but sometimes like last night my eyes just tear up! I got an instant hug but let’s not forget how fearful this is. I feel like I’ve been bouncing off the walls lately, hard to focus, and it’s really bothering me. I’ve also had several illnesses in a row so feeling off emotionally too. Where that leaves me… I’m renewing some goals… and I’ll share my books with you because this is a good combination for me.

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First, in the middle is the Law of Attraction Planner. This is my second year with this planner and it has enough room in it to journal if you wanted to, log your food, and every month, week, and day, you can write about your goals, gratitude, what’s working, what’s not… it has everything! On either end are two books/journals from Habit Nest. On the left is “Badass Body Goals” this is new and I’m not going to be using it with their exercise program, rather with DailyOM’s “Chair Yoga for Healing Strength and Mobility (because… hello… I have mobility issues).” On the right is The Morning Sidekick Journal “A science-driven daily planner for building positive life habits.” Habit Nest really puts out GREAT journals, they walk you through the steps in a simple way. No, I get no kickback from plugging these books. These are simply what works for me. Could be you’ll like them too. I got all three on Amazon.

You see, goals are vital. Growing, changing is essential to life, and moving alongside that and inviting change (and acceptance)… crucial! We keep changing until we die, might as well go with it!

I can’t walk a quarter of a city block. I live in the land of RA, osteoarthritis, etc. But I want to again. I want to go for a walk without pain and incapacitating myself for the rest of the day because that’s what happens. It may or may not be possible but I’m going to do what I can to help it happen. I think I can! I also know I have to start out slow. I can do that.

So here I am, needing to be more mindful in everything I do during my wakeful hours. Needing to be gluten-free again because it helps the inflammation – pain. Needing to exercise. Needing to be more mindful about journaling… or at least more thorough.

I’m not afraid of taking stock/examining where I am and how I’m doing… and adjusting accordingly. I’ll let you know how it went in a month.

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