Good morning from beautiful New England. I am happy to say that after a tough RA spring, my body has responded to a steady dose of meds and I’m feeling better. Been off the prednisone for 10 days or so which I am always grateful for. I’ve been doing house projects again and will be stepping outside to stain some steps this morning. I think I’ve lost a little of the bloat and weight from the steroids because the clothes feel better.
RA be damned!!!
It must be spring if my RA goes out of control. It must be spring if I get a respiratory infection and have to stop my RA meds. It must be spring when the pollen is strong, causing sneezing and runny noses.
This was an incredibly wet spring which resulted in lush gardens and lawns and LOTS of pollen. I imagine between the allergens in the air and the several weeks I was off my meds fighting upper and lower respiratory infections, my RA didn’t stand a chance. It’s been incredibly painful and my joints are swollen, necessitating me to take that nasty drug Prednisone more frequently than I like to.
I have even had to forage into my stash of pain meds several mornings. This is something I’ve not done for 2 years, since my knees were replaced. Just when I think that my RA is becoming a non issue in my life, it takes over my life.
I’ve stopped eating the inflammatory foods such as wheats and dairy, but I’m not sure that has had an impact yet. My blood work this week showed that the inflammatory markers were through the roof. I see the rheumy on Monday so we have much to discuss. Meantime, I’m hoping to get my butt outside and do some gardening this morning. While it may not be good for the joints, it’s good for the soul
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Two weeks ago I was in the desert of California, soaking up the dry, sunny climate and I felt wonderful. Flew home late on Sunday night and it was raining. Monday was grueling – I went into full RA flare. My wrists hurt, my fingers wouldn’t move. It was a cruel reminder that climate can make a big difference and perhaps I’d feel much better living in a desert environment. But I do love New England and it would be hard to leave. I also have a really great job that I cannot leave or retire from. Yet.
It’s rainy here today. My body has adjusted and I merely ache; it’s not painful like it was when I first flew home. Mr. Phat is doing better. His heart failure is behind him and he seems to be managing it better than he has in the past. I’ve taught him The Spoon Theory and encouraged him to recognize signs after he eats certain foods. Being mindful is helpful. We are waiting on some additional test results before taking the next step, but he did have a couple of good days in a row this week and that hasn’t happened in a couple years. Hopefully we are figuring it out.
Happy Easter. Happy Passover. Happy Spring!
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Good morning from Palm Springs California. I came with a girlfriend who had a conference. I hadn’t been away in too long and life had been stressful with Mr. Phat and his issues. When my friend asked if I wanted to join her she didn’t need to twist my arm.
It’s been nice and relaxing after our extended plane trips to get here. Airplane travel isn’t relaxing these days. I sat by the pool yesterday, something I haven’t done since my honeymoon in 2016. We have had some nice meals and I’ve been walking each day.
I feel very good out here in the desert. No joint pain at all. None. No morning stiffness. I guess that’s the difference from the damp, wintery New England weather and the warm dry California desert. I have not felt well this winter with my RA. I think maybe that means I need regular visits to the desert.
Mr. Phat spent 4 days in the hospital last week and lost over 10 pounds of fluid and feels much better, but still not great. The primary care doctor has been dragging his feet about addressing the B12 issues and the cardiologist doesn’t want to own the B12 diagnosis and thinks Mr needs a new defibrillator Installed. One that does more pacemaking then defibrillation.
If these doctors could talk to one another, maybe they would figure our that the a-fib and other erratic heartbeats started within 45 days of the initial symptoms that we believe are the B12 deficiency. One of the symptoms of a B12 deficiency is irregular heartbeats. I would think we need to treat that first and see what happens to the heart before we rush into more surgery, including replacing his internal cardiac device. Perhaps some of the heart failure is the B12 issue. C’mon doctors let’s get with the program
To you, my readers, thank you so much for chiming in after my last post when I went ballistic at the doctors. You were all so supportive and a great comfort to me. I didn’t realize all of you were reading. And it made me know that I am not alone in this journey. All of you have my back. And my hand. Thank you from the bottom of my heart.
I’m bleeping mad. I’ve kept myself quiet for a long time, just waiting for all the answers that we needed and while we still have some answers left to get, I am going to let off some steam. Just like a quick release of my InstaPot!!
My husband, Mr. Phat as some of you know him, has been sick for 2 years. It started very slowly in February of 2017 with some neurological type symptoms. Pain in the bottom of his foot, pins and needles, incontinence and the inability to catch his breath. In April 2017 he ended up in the hospital with the flu and Afib. Since that day he has had Afib on and off and the neurological symptoms have gotten worse and worse, making him a near invalid.
Since February of 2017 he has seen 13 different doctors, some more than once and that doesn’t include the doctors during his hospital stays. He has had 10 procedures, either trying to diagnose his problem or to fix his erratic heart beats and he had a lumbar spinal fusion a year ago which only exacerbated his symptoms. He has had 6 hospital stays including the one that started at midnight last night when I drove him to the hospital because he couldn’t breathe. He’s having another episode of chronic heart failure and he will be ok in a day or two.
In 2017 we paid $13,629.58 out of pocket for our medical co pays/deductibles and for 2018 Chris’s treatments alone were $7,994.59 out of pocket. Plus we pay a considerable amount of money for our Blue Cross Blue Shield medical insurance.
He has lost 30 pounds. Without trying. A neurologist that we saw locally decided that Chris had ALS. This devastated us for a while until we realized that diagnoses didn’t fit his symptoms.
Finally on Monday we went to Brigham & Women’s Hospital in Boston to the Neuro Sciences Division. We met with a young doctor for over an hour and then he brought in the co chair of the department. The guru, we were told. Both of these doctors agreed that Chris does not have any neurological issues. No, he has a B12 deficiency.
The Cardiac doctor at the hospital last night said that according to Chris’s blood work, he has pernicious anemia. Want to know the symptoms:
Fatigue, Shortness of Breath, Dizziness, Pale or yellow skin, Irregular heartbeats, weight loss, Numbness or tingling in your hands and feet, muscle weakness, unsteady movements, mental confusion or forgetfulness.
These are ALL the Symptoms that Mr. Phat has expressed to these 13 doctors over the past 2 years. Some of the have heard his complaints several times.
40% of people over age 60 have B12 deficiency issues. Hello??? 40%!! Don’t you think one of these doctors would have recognized a relatively common health issue? This shouldn’t be rocket science. This seems rather simple – they were looking at deep stuff like MS, Parkinsons, ALS, Amyloidosis, Multiple Myeloma and it was B12. I cannot tell you the frustration I feel for the 2 years of his life that Mr. has lost. The unnecessary, painful, debilitation surgery. The tests, the visits to the hospital, doctors offices.
To add insult to injury, we received 5 pages of invoices from one of the medical providers this week looking for $3891.52 and $1304.08. I can prove that I paid most of it, but the $40 co pays that go back to 2012 and 2013? Really? How did we get out of the doctors office with out paying our copay?
I feel better already. I have always preached to be your own advocate, and as much as we have tried – and pushed and cried and asked, we didn’t get the right answers. Sub par care for sure.
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It is well beyond time to update you on Phat50Chick and what’s been going on in my life. I am home on a Saturday Snow Day and it feels good to have a restful day after several busy weeks. I was working from home this week one day and was out walking the dog and slipped on the snow covered ice three times. I didn’t hurt myself, but I admit that I was sore yesterday. I felt it. RA doesn’t like it when you fall. Fortunately today’s snow is a dry snow and not icy, so I was able to clear the walk with the power shovel I bought this fall. Part of my admission that we can’t do all that we used to.
The RA is definitely present. I’ve not had the pain free days that I’ve had in the past and I attribute that to stress, my diet and not exercising enough. Mr. Phat is still struggling mightily and we don’t yet have any answers as to what’s wrong with him. We have ruled out some things but questions still exist. I work really hard and then come home, walk the dog, bring up wood for the nights fire in the woodstove, and have to help manage food. I used Hello Fresh for a month and that was great and convenient but the cost adds up over time. I got some good ideas and have taken on more of the decision making for dinners. We have also found the convenience of ordering groceries online at Walmart and picking them up. It’s easy. Mr. has been our grocery shopper, but walking the store takes so much out of him, that this has become a wonderful solution. We’re not loyal Walmart shoppers, but sometimes you have to do what you have to do.
Mr. has an appointment with the neurology department at Brigham & Women’s in 2 weeks and we are hoping to finally get some concrete answers. We know he has some pinched nerves, but the local neurologist feels that there might be something underlying. I admit to having a few tears when we got the phone call from Boston with an appointment. We have been far too long without enough information and he seems to slowly deteriorate.
Meantime, I’m trying to be better about my eating and need to start doing more fitness related things. I know being too busy is a really lame excuse. So I’m done with lame excuses……
I’m always thankful to be able to put one year to bed and to start a new one. This year I am especially happy to see the end of 2018 and am hopeful that 2019 will be better. I bought this tacky holiday decoration and put it in the kitchen. Because we need hope.
I haven’t paid attention to phat50chick this year. My RA is there and it’s about what you would expect with a chronic illness for an overweight woman with a stressful job and sick husband. I had nothing to say about my RA, but I will acknowledge that I haven’t felt my best this year.
This was the second year we searched for answers for Mr. Phat’s issues. We knew that they weren’t just due to aging. We tried a spinal fusion which was a difficult surgery that didn’t help. We explored another spine surgery but there was no way we wanted to rush into that.
We are still on the hunt but recent steps have sent us in a couple of directions. Maybe we are getting close. So we continue to have hope.
My hope for you, my readers, my friends, my family and my supporters, is a happy, healthy and blessed 2019
