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Still recovering or holding steady

Went to the ER again, this time in Kalamazoo. CT shows that both pulmonary embolisms have not grown, though they’ve not shrunk yet. I am having tachycardia (high heart rate), even if I walk across the room- so I am bedridden a lot, which is not cool.

I used to have to run or workout hard to get to 140 beats per minute- now I can do that walking down two flights of stairs to my kitchen. My resting heart rate is around 81 right now, which is INSANE for me.

I was pretty fit right up til 20 min before my clots (for someone with my genetic and age related crap). I ran, I walked, I was a fitbit freak. I don’t do drugs, I don’t smoke, I rarely drink- but when I do, it is with friends and family- I stopped eating carbs until my surgery. I felt amazing til the hysterectomy… ok, well, I AM a little reclusive by nature. I like just being with my kid and doing stuff quietly. I can’t even do that now.

I was right about the robot trepidation, I guess. They suspect that surgery caused this shite.

I am getting referred to a cardiologist to be put on a Holter monitor- and see a blood specialist about my genetic clotting disorder this week.

I am too stubborn to die. I refuse to leave my little girl. I’ve advocated for patients in the past- it is more difficult to advocate for yourself when you are infirm.

This morning I dreamed of my childhood bestie, Roger. He died about 6 yrs ago, suddenly. Had the same thing the actor John Ritter died from, just fell down and died at not even 40. He’d broken up with his boyfriend some time earlier, but had his room mate living with him at the time, who called the paramedics when he heard it happening.

I dreamed I was in Roger’s old bedroom from when we were teens on Red Arrow Highway in Watervliet. It was empty except for a waterbed and a little dog was hiding under the covers, and I pet it- it was a white small dog, not like the ones he owned that I remember. I had to go in his old closet to get a checkbook and get some of his bills paid- and his old closet was far deeper and larger than it had been. He was nowhere to be found, but I talked to the air and told him his bills were paid, then I saw another old friend (not Rog- and I presume still alive) whom I haven’t seen in over 2 decades- but none of my friends in the house could see him and asked me who the hell I was talking to…

The most comforting thing was seeing my other friend, who I believe is still alive, but lives abroad. It was so real. I put on a brave face to most people and really don’t get into the emotional aspects or fears associated with this crap, but it does scare the shit out of me.

People EXPECT me to be the tough bird, the crutch for them… except for this blog or my other writing outlets, I tend to not let people in. I suspect a lot of folks are like me, IDK.

Life, for me, is stop whining and get the fuck on with it, usually.

I almost died this month, suddenly, from bilateral pulmonary embolisms. I don’t want to die. I REFUSE.

Rog, I love you, but I don’t want to see you anytime soon. Maybe in 40 yrs. XO

My other friend/s. I love you all, too- even the ones I haven’t seen or neglected to reach out to for a million years. Thank you for reading this and I am sorry I have not been updating very often.

 

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Rough morning after 2 weeks of smooth recovery

Been feeling better than anyone could have imagined, with having pulmonary embolisms in both lungs. My lung sounds and functions were clear, my ‘spells’ less so- I felt fantastic… until this morning when I woke abruptly this morning.

I woke up at 6 am, sweating and not able to catch breath. It’s 2 weeks since I was diagnosed with bilateral PEs and I haven’t had a ‘spell’ like this in over a week. I’d been feeling better.

I feel like it burns all the way into the middle of both lungs, hard to catch an inhalation, feel like I have to cough phlegm, but nothing.

My bp is lower than normal 102/80. I woke with tachycardia (fast heart rate) over 120, that went down to the 90s.

I’ve not had spells this bad since the hospital. My pulse ox reads anywhere from 93-98, depending.

I still can’t take a deep breath right now… it’s getting better, but it’s scary nonetheless.

I don’t drink, don’t smoke. I just started getting my steps back up from nil to 7k the last three days. I’m on the ketogenic diet.

When they said recovery is a process with pulmonary embolisms, they were not kidding. I can have relatively normal, excellent days- then BAM! Scary, back to square one.

Some folks in my support group say it takes months to years to recover.

My stubborn self was hoping for WEEKS. I push myself too hard. I am depressed, as much as I can be. Mostly because I don’t like to be idle.

Saw my gynecological oncologist this week and everything in that area is looking great since the hysterectomy. This surgery caused my PEs, btw.

I am too ornery and cantankerous to die. Too much to do… and I have a child to care for.

I refuse to succumb, but if anything happens to me, tell my baby I loved her.

So far, I am told I am lucky to be alive as it is. For this, I am absolutely grateful.

I have so many people I love and have loved. I don’t want to go anywhere.

I want to celebrate being alive. 2018 was rough. I am not the only person in my family to nearly lose their life in a sudden accident this year. We are blessed to be here right now.

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I am have been gone for quite a while-

My sister still has cancer, my mom is in a facility getting her bipolar/dementia meds leveled out, I am going through serious family problems and experiencing long term ptsd as a result of past child abuse.

Maisie is doing wonderfully! She is in Montessori school and is three now. She also does ballet/tap and adores it.

I have been on a ketogenic diet this year since July 10, 2017 per my cardiologist’s suggestion. I have also been using/wearing a fitbit charge 2, which has absolutely changed me from sedentary to active and I love it!

I am starting a vlog to chronicle my keto journey and just to be able to vent… xo

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Sorry I’ve not been posting in weeks… updates- and why I’d prefer Universal Healthcare. Bernie Sanders has my vote.

Had a raging kidney infection that must have gone on for a LONG time… I had to ask my doctor for a urinalysis. They kept insisting it was simply ‘referred pain’ from my back procedure.

To add more to the mix, I had my menstrual period for a month and a half. Had an ovarian cancer blood test- need to take the DNA Colors test for more genetic mutations related to breast and ovarian/uterine cancer. Apparently, they’ve discovered MORE mutations, other than BRCA1 and BRCA2 that can indicate this. It’s $250.00 out of pocket.

Next week I have a uterine biopsy. Fun.

These medical bills are KILLING ME. I pay for my own health insurance for my family, because I am self-employed. Currently I pay over $650 per month… after my back procedure, I was shocked to find out that my insurance covered only $880.00, I still owe $2200. The deductible for this is $13,500. My year to date totals are $12,000! This is INSANE.

I changed my insurance for January- I will be paying $1360 a month for insurance and only have to pay 10% of each charge.

Needless to say, I would much prefer socialized medicine. I had it when I lived overseas and I had it when I lived in Canada. People should not have to go bankrupt because of their health. Universal Healthcare should be a RIGHT, not a privilege.

Low income people with free state medical insurance have it better than my fancy-schmancy crap that I pay for!

Seriously, I am scared to go to the doctor now. The holidays are coming up and I want to be able to afford a nice one for the family and not have all my extra cash go to medical expenses.

The middle class is getting SCREWED.

That being said, I am ‘feeling the Bern’ for Bernie Sanders.

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All About Lupus and Lupus Flares: Having a horrible lupus flare today. Can barely move.

Lupus sucks.

I have not had a full blown flare in years. Yesterday’s debacle was enough to propel me into the most painful, debilitating one I can remember in eons. Mine were obviously caused by the stress of yesterday and my joints ache, I can’t move, super tired.

High dose vitamin D3 has usually kept mine under control- as well as practicing stress control- but I’d been lapsing on the D3 lately.

The bottom mind is: Stress CAN cause dis-ease. It’s unhealthy and can harm you.

For those who don’t know what a flare is, from this page:

Most lupus flares are preceded by warning signals or arise from certain conditions.

Systemic lupus is a disease that can affect many parts of the body. A lupus symptom that is active for a while is called a lupus flare; if the symptoms go away for a period of time, it’s referred to as remission. Some doctors prefer to use the term “quiescence,” which means a quiet period, instead of the word remission.

“I don’t like to use the term remission since lupus symptoms rarely go away completely,” says Jennifer Anolik, MD, PhD, a rheumatologist and researcher at the University of Rochester Medical Center in Rochester, N.Y.

If you have lupus, you may have symptoms like fatigue, muscle aches, and joint pain most of the time. More severe symptoms such as exhaustion, weight loss, fever, and anemia can occur during periods of a flare and may require treatment with steroid medications.

“Lupus flares can be classified as mild, moderate, or severe,” notes Dr. Anolik. “Symptoms of a mild flare might be the appearance of a lupus rash. A very severe flare could cause fluid collection around the heart or even kidney failure.”

What Causes a Lupus Flare?
If you have an autoimmune disease, like lupus, your immune system incorrectly turns against normal cells and tissues in your body. In lupus, the immune system makes proteins called “auto-antibodies” that can attack many parts of your body and cause inflammation. Anything that triggers your immune system can then cause a lupus flare. Triggers may include:

Ultraviolet light. “UV light is a common trigger for a lupus flare. Exposure to the sun typically causes a lupus rash but may also activate more severe systemic symptoms of lupus,” notes Anolik.
Infections. Any type of infection can stimulate the immune system and this may result in a lupus flare.
Stress. Stress can be emotional or physical. Lupus flares are common after physical trauma, surgery, or emotional events.
Pregnancy. Lupus flares are common during pregnancy and in the period after the birth of a baby.
Starting a new medication. Certain drugs, such as sulfonamide antibiotics and the over-the-counter herbal drug echinacea, have been shown to trigger lupus flares.
Stopping a drug. Always talk to your lupus doctor before starting or stopping any medication. particularly Plaquenil (hydroxychloroquine). “Studies have shown that lupus patients on Plaquenil are less likely to develop a lupus flare,” says Anolik. “Patients should know that if they stop taking their Plaquenil it can cause a lupus flare.”

What Are the Warning Signs of a Lupus Flare?
If you have lupus you should be aware of the signs or symptoms that can indicate when a flare may be starting. Some common warnings of a flare are:

Becoming overtired or feeling as though your stress level is building up.
Having more frequent or higher fevers than usual.
Aching in your muscles, or more painful and swollen joints.
The development of a rash.
The development of any symptoms you have not had before.
Remember that lupus can affect almost any area of your body. It is important to report any new symptoms to your lupus doctor so you can get treated for your lupus flare quickly.

How Often Do Lupus Flares Happen?
“Every lupus patient is different, and the number of flares is unpredictable. If a patient is having a lupus flare every month, I would be concerned that their disease is not as well controlled as it could be. Three to six lupus flares a year is about average but we also have patients in quiescent stages of the disease who go for much longer periods without a flare,” notes Anolik.

Lupus flares are a normal part of the disease. You should become aware of the warning signs and see your doctor when they occur. Researchers are actively studying ways to prevent lupus flares. “In the future we hope to have tests that can better predict a lupus flare and allow us to start treatment even before symptoms occur,” says Anolik.

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GOTTA DO SOMETHING ABOUT THIS BAD BACK: Buti Yoga *IS* Happening Starting Today

largerI have to do something about this bad back of mine asap- which means starting to work out again. Buti Yoga appeals to me. I had a 30 day membership after Maisie was born, but I was still unable to really do it due to my c-section and health at the time… but I think now I can begin.

They have a ton of free workouts on YouTube right now, which I will use first before I restart my membership with the site.

I still have 30 lbs of baby blubber to lose…

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I was in the hospital all yesterday evening

my 2nd IV, after they blew out a vein in my arm

my 2nd IV, after they blew out a vein in my arm

My father had cataract surgery yesterday morning and I went with Maisie and my mother to bring him there.

Out of the blue, I felt a sharp pain in my right shoulder blade. It worsened as time wore on, eventually my entire right hand was also numb.

Later that afternoon I called my doctor and was going to come in to see her.

About an hour after calling her, my LEFT arm/hand started to feel numb and breathing became difficult.

Since I have Lupus (a genetic autoimmune disorder) and Factor V Leiden (another genetic thick blood clotting issue), I called the doc again and she told me to get to the ER.

“Better safe than dead” were her words.

Not wanting to worry my father, who was recovering from surgery at my house, I simply asked him if he could watch Maisie while I ran quickly to see my doctor.

While I drove myself to the Emergency Room, the pain became nearly unbearable. I worried I was going to pass out before getting there. Luckily, I made it with no problems.

They did an EKG immediately, gave me an injection of some pain med that starts with a PH or F, then took tests to check for blood clots, did X-rays. The initial pain med did little more than make me dizzy, so eventually they gave me morphine. THAT barely worked, so I ended up with an injection of valium as well.

My blood clotting test came back too high, which scared the crap out of me, so they whisked me down the hall for an angio CT scan. While pumping the contrast dye through the crook of my arm, I felt a sharp pain.

Yay! They blew my vein.

I was sent back to my room and had to take ANOTHER blood test to check for heart attack. During the analysis, the machine breaks down.

Double yay!

Eventually I was discharged- they believe I have ANOTHER herniated disc in my spine.

My child is the destroyer of spines- I am convinced.

I was given a prescription for valium and instructions to call my doctor.

Now I have an appointment tomorrow at 10 am and I can do very little but lay in bed.

I had a lovely hour long massage today, which helped so much.