May is My Birthday Month

It is that time of year once again, May! May is my birthday month. So get ready for lots of book and reading quotes.

I’ve missed being around here so much, but have been dealing with a lot of fatigue and health issues and even though I wanted to be here, I had very little energy and a lot of health issues and pain.

I saw my doctor about a month ago, again, because I still had a lot of questions that she hadn’t answered from previous appointments, questions that I asked her point blank and she did not answer. We got into another argument about my health issues, my thyroid medication daily amount, and other testing that I wanted done.

She told me that I can’t have all the tests done that I want, cause apparently she thinks that I am getting my requests from dubious internet sites, which I’m not. I had to defend my right to have tests done. She had agreed to testing for Epstein-Barr fatigue syndrome and yelled at me that it would not do any good, as there is nothing to be done about that, it’s a virus and there is nothing to be done about it. I told her it mattered, it was important, and she needed to run the test. In fact, there are plenty of things that I can do to make it better and to make my life better, and to improve my immune system, foods to avoid and foods to eat, etc. etc. etc. But apparently from her perspective that is not a prescription medication, so none of that matters. She is awful. I haven’t been back to see her since.

I found out by reading online that she didn’t bother to do the right test, the one that will tell me if the virus is active now, an essential and important medical question that she should have wanted to answer for me. She only did the test that showed that I have been exposed to the virus, which just means that at some point in my life I had the virus and it was active. I had to argue with her to get the wrong test done!

So I go back one more time to get my blood tested for another thyroid  medication adjustment, in two weeks, and then I will find a new doctor. I have picked out two very reputable clinic systems to try. In Minneapolis there are tons of hospitals, clinics, and doctors, especially in the downtown area, where I live. So I will definitely have plenty to choose from.

In the meantime I am continuing to eat as healthy as possible, taking my supplements that help do so much, continue with the hemp capsules that I started taking a month ago, and continue losing weight (I have lost 20 pounds.) Right now I’m losing a few pounds a month, but I think that as I continue and as I feel better I will lose more per month.

 

So That Didn’t Go So Good

I had an appointment with my doctor this past week. So that didn’t go so good. Well it went good if I wanted to be ignored and not get any of my questions about Hashimoto’s Disease taken seriously or answered and have the doctor keep saying the same couple of explanatory sentences about Hashimoto’s at the top of her lungs while talking over me after every question. But I didn’t want any of those things.

She lectured me on how I was asking for too many tests, but they were all reasonable health issues that anyone with my issues would want, not the hugely expensive tests that I would also like to have done. I told her with my health issues and disabilities I believe these tests are appropriate. She did agree to doing some of them.

Finally when she got too exasperated with me and my questions, she said that nothing will help, that it is a degenerative disease, it will only get worse, until I have to have it removed. Yeah thanks for that uplifting and supportive appointment.

Yes the proper diagnosis in a timely manner, the proper dosage in a timely manner, and an adequate care team would have meant a great deal for my life and my health. Aside from that I have for certain known from personal experience that making certain life choices do make me feel better healthwise. Especially eliminating soy from my diet recently and eliminating gluten ten years ago.

She told me that the medication dosage mistake that happened a couple of months ago was my fault, because apparently she did nothing wrong, the pharmacy did nothing wrong or perhaps it is all the pharmacy’s fault, and her nurse isn’t lying about the facts as I know them.

I got a prescription, got home, called the pharmacy to check if it was the right amount, cause my doctor had several typos in her sentence on dosage on the piece of paper I got at the end of the appointment, and it was confusing, and called the nurse to confirm and I read it out loud to her what dosage the pharmacy had given me, and she confirmed, and I got it confirmed two other times with the nurse information number each time I picked up a refill; then to be told a couple of months later that I wasn’t taking the right dosage of the levothyroxine. The two nurses deny confirming the wrong dosage to me. I know that they did, the filthy liars.

My “doctor” said to me this past week that she is her nurse, she is nearer to her, and she trusts her. That’s fine, you trust a complete incompetent who confirmed the wrong dosage to me for two months, a nurse who is willing to lie to protect her license, her job, and her career. This is not a person that I will trust to do anything medical for me. I don’t want her touching me or talking to me or lying about me. I need to go in at the end of the month for my B12 shot and to get a lab test to see if my levo dosage is okay for now, so I won’t be seeing the doctor or the nurse. They have a specialist at the clinic that I could transfer to, if I decide to stay at that clinic.

Then this week I went to pick up a couple of meds from the pharmacy after the doctor appointment, there was two antibiotics for my sinus infection. One was amoxicillin, which my doctor and the clinic knows and is in my medical record, that I am allergic to. So that doctor is really trustworthy. I am on my third day of azithromyocin and it is working great, as usual. I’ve read tons online about bad doctors, it actually seems to be the rule rather than the exception.

There is some advice of hers that I am definitely going to take though, she told me that if I continued having a problem with her nurse, then I needed to see another doctor. Very astute advice. I’ll be sure that the business office knows what the doctor told me, I believe in giving feedback.

Hashimoto Says What?

He says hi, I’m yours, good luck to you.

So that was great.

Hashimoto’s Disease, otherwise known as Hashimoto’s Thyroiditis, an auto-immune disease based in the thyroid.

So that’s my most recent diagnosis. The one that I think is the most accurate, the one that gets to the addressing all the issues and false diagnoses that I have gone through. The diagnosis that I have been chasing for at least the last twenty years.  Finally I got that about a month ago.

Basically it explains my fatigue, or as I usually call it, my exhaustion and everything else that a diagnosis of fibromyalgia could not help or in any way encapsulate.

Also about a month ago I got a doubling of my synthetic thyroid medication, after the diagnosis, and although it still is not high enough yet, I finally, finally!!! I say, reached enough of a dosage that I can sleep deeply and sort of restfully. So I’ve been sleeping an awful lot in the last month, and each time I think, this is great, but sometimes I also think there is life passing me by some more.

Each day I think about posting here, but kept putting it off, just so exhausted. I guess the diagnosis and the resulting validation of it all, it has been so wonderful and yet so eye opening to how truly, really, and deeply exhausted and fatigued I am and how hard it has been to drag myself around with no energy and exhaustion I have been carrying around with me, lo these many years.

It hasn’t been depressing or disheartening, just a more deeper awareness of how much I am dealing with. And how important it is to just chillax and rest so that I can help myself to heal and to meet my needs.  Another issue is that this auto-immune disease can include depression and anxiety, so I am hopeful that the proper med level and the proper monitoring of what I am dealing with will lead to less depression and less anxiety. This makes me feel better all by itself, just thinking about it. Though of course, realistically, I have a long and plentiful list of reasons for depression and anxiety.

My doc will be looking at adjusting the med again in another month, after another blood test, so that is good too. I am so looking forward to that. I only wish that she would have given me 100  or 125 mg daily to start, as that is where I know I need to be.

I was also diagnosed with b12 deficiency and started getting b12 shots, which makes me shudder during and right after, but also makes me feel better within a couple of minutes. Wow! That is great.

I also need to have an ultrasound on my thyroid, in my neck area in the next month. That is important to monitoring and diagnosing other advanced health issues with my thyroid.

I also got some of my supplements and some essential oils today, which is so great, and I know they all help me so much. I love getting the extra help in healing.

Good and healing thoughts to yous. I missed you all.

 

A Small Update

My health continues to improve. Except for an issue with my ears, which is perfectly normal, unfortunately, when I have had a couple of health issues in a row. My ears are in more pain and when I stand up I am dizzy and my balance is way off. I’m not having huge periods of vertigo with this, which is so freaking wonderful. I am treating that and if it gets worse, rather than better, I will get in to see my doctor when it starts getting worse. I will continue to treat as I have in the past, with home treatments that have helped in the past.

My yearly subscription to amazon prime is expiring in a couple of weeks and for the last month or so I have been trying to see some of my stuff on my watchlist for the last two years. I decided not to renew this year. I’m not happy with amazon as a company nor the available options on their site of shows for viewing with the membership. There really isn’t much that I want to see there, and then only low priority, cause there is so much elsewhere that I want to see more.

I decided to cancel and then maybe a few times a year to do a monthly membership there and spend the extra money on a PBS membership. I haven’t been a member in a number of years there and this is my effort to spend my money in places I really endorse.

One of the shows that I have managed to watch there recently is Deadwood. I managed to watch all three seasons in about the space of a week. So I have been swearing a lot more than normal. Lol. Sometimes I am such a sponge

First, I love Deadwood, and second, the writing, directing, and acting on that show were all fantastic. If you haven’t seen Deadwood, I highly recommend it. But with one proviso, it is very triggering and many of the story lines are very abusive.

I can’t remember if I mentioned this lately, but I am also re-watching the original show of Law and Order and am on season 11 of 20 seasons. My lovely local library system has them for checkout for free. 🙂 I love my local library system. It is the best!  I love that show and thanks to late night repeats on television over a period of years and years, and insomnia, I have seen it over and over again. This show is one of my all-time favorites. I still think that my favorite seasons are 1-3. I’m hoping to finish with the library use of this series before winter sets in hard. I think that I should manage that okay. Being sick has meant that I watch lots more stuff to occupy myself since I can’t be out and about as much. I am having a great time with it all and working hard on self-care and self-love to keep me occupied.

 

Cotton is My Favorite Fabric

Cotton is my favorite fabric. I love the way it feels. I love the way it washes and stays in good shape. I love the way it looks. I love easy and comfortable and cotton is the fabric for me.

Some fabrics have other feels to them, including more lush and expensive feels, but nothing feels as good to me. I like some other fabrics, but they are more for big celebrations and parties. They cost more and care is more expensive as well. Cotton is for every day. Cotton is for my every day.

For many years I could buy 100% cotton tshirts and shirts. Only now it has gotten harder and harder to find them in the lower priced stores. They have gone back to cotton and polyester blends, of course cause they are cheaper, but the quality is cheaper as well. Polyester is plastic, it makes me sweaty and hot, uncomfortable and unnatural. Cotton does not.

About 4% of spandex is acceptable on really loose clothing, otherwise it causes me pain, think that is due to my fibromyalgia and back disability issues. Having comfort in my clothes is extremely important and I take it very seriously, as seriously as I take my other self care issues.

I really hate finding a shirt I really love at a used store only to read the label and discover it is plastic. I really hate that. I know that I can’t comfortably wear it, getting hot, sweaty, and clingy if I were to try. I’ve tried to buy and wear those in the past and it never ends well. I almost did it again recently, having to repeat over and over what has happened in the past.

I think if I could buy in the more expensive stores I would be able to still find 100% cotton much easier. I wish that I had the extra money to spend.

I recently bought some new t-shirts, with and without sleeves that were 58% cotton. It is sort of acceptable, but not really what I want and would prefer to buy.  I had to buy new items, because it is so hard to find something I like, that fits loosely, and that has a good amount of cotton in it. I look every time that I used clothing shop, but usually don’t find anything. So I have some acceptable new things to wear for spring and summer.

 

Five Days in a Row

I rode my bike and went somewhere each day for five days in a row this week. This is huge news and I wanted to share it. I suppose that hasn’t happened in more than three years, when my health got so much worse than it had been. I think that was mostly due to my undiagnosed gall bladder issues, but it effected my whole body, increased my level of pain, and caused me to have a huge increase in walking and standing pain and difficulties.

Actually I probably haven’t done it that many days in a row since the summer that I moved into this apartment complex. Back then I didn’t have air conditioning and absolutely had to get out of this heat box building at least a few hours each day.

It was a real challenge and seriously I didn’t think that I would be able to do it. But the tenant below me is still here and I really wanted to get away from her each day during this week, so I was highly motivated to avoid her for at least a few hours each day. Being this active has caused a deep increase in back and leg pain, especially going down into my left knee, a key issue for many years.

I know that I share about my health and my health limitations, but I don’t think that I have shared about how hard and restrictive things have been. Being vague works better for me. It’s hard for me to share here when I don’t get the support from my family, my community, and public and private spaces that I do go to. I know from experience that my blog friends, over the years, have never mistreated me or treated me badly, but I get it from so many areas of my life, it makes it hard for me to share anywhere, even here, about specifics.

When I share with my family I don’t get support or help for my limitations, even when I ask explicitly for a reasonable accommodation. I get sneered at. I get jeered at. I get insulted and diminished. They say they love me, which I really doubt based on their treatment of me, and then they act like I should not be disabled or need help or assistance or accommodation or equal rights. They suck, I know.

It’s that they suck so bad and that I’ve had so many experiences out in public, in public spaces, in shopping places, and everywhere, all that time, that reinforce that others don’t care and even though it is the law, they either refuse to comply with the disability laws or they act like I and others are not asking for equal rights and equal access, but rather are asking for extra rights and extra access and they believe they have a right to deny us that. And again it is against the law. So many people out there suck and feel that I don’t deserve reasonable and legal accommodation be made for my disabilities. It’s hard for me to share about this and how much it restricts my life. I hate that so much, but I also know that if others cared and did things to give me access and accommodation, then my life would be so much easier and so much happier.

My Next Dr’s Appointment

My doctor had recommended that I see an ear nose and throat specialist and because she is my doctor and because I love her so much, got an appointment for the week after I saw my doctor, even though I have only seen one of those and it was an awful experience. My experience is that they are argumentative and contentious doctors, which is surprising and the reason why I don’t try to see one more often.

My doctor had diagnosed a middle ear infection, with fluid in the ear. She gave me a prescription for an antibiotic and I was feeling much better before seeing the specialist.

This doctor was the same as the doctor that I saw many years ago. In addition, she was dismissive and insulting, which really made me mad and made me stand up for myself to the doctor. She said that since I hadn’t had any surgeries or tubes in my ears then obviously my ear infection issues as a child were not very serious. I told her hey I’m so many years old and that was years before doctors did tubes in little children’s ears and my parents were poor, without insurance, and did not get me adequate health care, and never took me to a doctor when I had an ear infection, so you cannot be drawing any conclusions from that. She was a total jerk. She suggested that next time I have an issue that I make an appointment so she can see what it looks like. As if I would see her again.

As my doctor said, she wanted to eliminate some possibilities, so that was good. I took a hearing test while at the specialist and I still don’t have any hearing loss or issues there, so that is great. The specialist referred me to a physical therapy clinic that specializes in TMJ, Trans Mandibular Joint Disorder, which my doctor had already considered a good option to consider doing some therapy with.

I was diagnosed with this about ten years ago, though have probably had it most of my life. I won’t be going to the clinic as they are at least twenty miles away from where I live and don’t want to do physical therapy on my neck and jaw. I might consider looking into other options there in the spring or summer, when I can more easily travel in warmer weather. I am also considering going back to have my chiropractor do acupuncture once again when the warmer weather arrives.

I started focusing more on the TMJ issues since then, as that seems to be the cause of most of the issues and am doing things to help that. The good news is that it also is doing better, with less tightness and pain and less horrible headaches. Less pain and less headaches, good news for the new year.