Health Update · Learn Something!

Lack of Posts Brought to You by Poor Health and Insurance Companies

I am alive! I write to you from the infusion room as I receive IV saline, nector of the gods.

I have all sorts of things to talk about, including more cheerful parts of my life, but for this post, I am going to focus on my health. Spoiler alert: I have spent most of my absence from blogging managing my medical issues, and taking panoramas of waiting and exam rooms.

Medical Related Pics

IVIG

Not having miraculously healed means continuing to argue with my insurance company about IVIG. That’s right – 18 months from when I mistakenly (pharmacy error) received IVIG, the IVIG saga continues on! There were many bumps in the road that have lead to me still not having it, one being the prescribing doctor breaking up with me. She used the good ol’ cliché of “It’s not you, it’s me.

In all honesty, it was an incredibly frustrating turn of events, however I also understand how overwhelming my case is. My issues do not fall squarely in one medical specialty; therefore no one particular doctor is equipped to fully handle my care. What the break up meant for me (besides the need to seek out therapy since I now have trust issues… 😀), was I needed to entirely restart my IVIG case with a different doctor. This was overwhelming news, especially since I was still recovering from a different IVIG related bump in the road… The one where a particular IVIG company mistakenly told me in writing, and in 6 different phone call interactions, they had gotten insurance authorization, and mailed me all of the IVIG supplies, complete with IV pump and pole, 10 grand worth of medication.

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YES. Seriously. Two separate specialty pharmacies, two totally different insurance companies, 6 months apart – same exact issue: they claimed (several times, I might add) they had obtained insurance prior authorization when, in fact, they had not! Fortunately, I wisened up the first time around and, by calling my insurance company myself, caught the lie error before anything was infused.  Having to return the medicine I am trying so hard to get approved was not a joyful experience. In its entirety, the IVIG saga could be a short book, but suffice to say, it all has ended up consuming much of my available energy.

The doctor who took over prescribing me IVIG did a peer to peer appeal about a month ago. This entails my doctor talking to an insurance doctor and explaining why he feels IVIG should be considered medically necessary in my situation. Typically, I get a rejection letter from my insurance within days of a peer to peer, however this time around, they seemed to be taking their sweet time. This made me hopeful they were carefully considering all of the evidence we provided, because right now, the IVIG policy doesn’t include my condition at all. It isn’t listed as not considered medically necessary, sometimes medically necessary, nor medically necessary, and none of their IVIG policy citations include paper reviewing my condition; it simply isn’t listed anywhere in the entire policy. Deep down, I suspected if they were considering the evidence, it was in order to write a new medical policy, which would include my condition in the IVIG policy, but for the purpose of stating IVIG is not considered medically necessary. Then, I thought of an even more likely explanation…. they forgot to send me a denial letter. I called four days ago, and after a month of eagerly checking my mail everyday, it was confirmed; IVIG was denied. I need to talk with my doctor, however the next step would be a written appeal.

Quality of Life

My health related quality life is incredibly low. I spend hours every single day managing my illness enough to simply to exist, and experience chronic pain. The minimum amount of time it takes me to fall asleep at night is 2 hours, the longest is 5 hours – good thing I enjoy reading! Some days, all I can do is eat a meal or two, basic hygiene, and a few stretches… and even those are a struggle. Some days, I can do the aforementioned activities, then a few other tasks, such as loading the dishwasher, cooking, or going for a drive with Jake.

Spontaneity is out the window, but with medication and planning, I can still do “big” days once a month or so without my illness slipping out of my control. Tomorrow is a big day for me. We are going to my family’s cabin for Father’s Day. I have structured my entire week accordingly. I have rested the past few days, and expect to be on bed rest for a few days after tomorrow. I am looking forward to tomorrow, and plan to enjoy myself. Just because I cannot do things I enjoy as often as I used to, it doesn’t mean I do not enjoy them when I am able to participate.

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pictures from Father’s Day last year 🙂

While my health related quality of life is horrendous for a 27 year old woman, I do not view my overall quality of life as horrible. I think this is because of my wonderful support system, and my semi dark sense of humor. I am grateful for my ability to genuinely laugh at the fact my doctor “broke up” with me by saying it isn’t me, it’s her. If I were this sick without a good support system, it would be much more difficult to endure. I have noticed stress plays a huge role in how sick I am, particularly interpersonal type stressors. I admire those of you who stay strong despite a lack of support and/or despite mental health conditions.

Old Symptoms

My old symptoms continue. Sometimes I am able to make them less intrusive by meticulously planning my days. For example, I manage my symptoms by not eating. If I eat more than a minuscule amount then don’t rest, I faint and throw up pretty easily. This is because when I force my autonomic nervous system to choose between digestion or consciousness, it is going to choose consciousness (this is simplified, but you get the idea). Therefore, I try and look at my calories on a weekly basis versus daily. If I want to spend time with my family or have an appointment, I don’t eat much, if anything beforehand. I eat as much as I can the day before and after. If I eat whenever I want, then go on my merry way in the world, I will become more symptomatic. The symptoms are my body’s way of asking me, “What do you think you’re doing!? Do you not see how hard I am working??” It sort of reminds me of a parent, who just mopped the floor, scolding muddy shoed children as they run through the kitchen.

Other old symptoms giving me a hard time right now include sore lymph nodes in my armpits and throat, fatigue, gastroparesis…. however, I am not going to spend long on old symptoms. They’re there. If they disappear, you’ll definitely hear about it!

New Nerve Pain

One fun new symptom I am experiencing is a different type of nerve pain. Let’s talk about nerves and neuropathy for a minute before I continue. Neuropathy is nerve damage. It can be caused be a variety of diseases, some extremely common, some rare. In my case, the cause is an autoimmune disease called Sjogren’s Syndrome. You have different types of nerves, both large (also known as A & B fibers) and small (known as C fibers). Large nerve fiber types include motor and sensory, while small include autonomic and sensory. If you would like to learn more about the various types of nerves and/or symptoms of damage to them, here is a Wikipedia page, an article, and a technical slideshow. Now that you know what the various terms mean, you know when you put together the nerve fiber type + neuropathy (example: autonomic neuropathy), what is being said is: the nerve fiber type (autonomic) is damaged (neuropathy). Sometimes names are used interchangeably, which can be confusing. For example, some may refer to autonomic neuropathy as small fiber neuropathy. Technically, this is accurate since autonomic nerve fibers are a type of small nerve fiber, however autonomic neuropathy is more accurate and the preferred term.

Okay, back to my symptoms. I have had small fiber neuropathy for several years. Small fiber neuropathy can affect the sensory nerves, autonomic nerves, or both. I have autonomic neuropathy. It is the root cause of my autonomic dysfunction/POTS, but does not cause pain (at least not directly – I can’t say my stomach not digesting food, or my eyes failing to adjust to light, feels good). I also have small fiber sensory neuropathy, which in my case, results in a burning sensation. Do you know that feeling when you touch something hot, then let go before it actually burns you enough to leave a blister? It feels like that, and runs up my arms and legs. Some people experience small fiber neuropathy as pin prick sensations, numbness, or tingling. Something fortunate in my case, that isn’t true for all sufferers, is it is not constant. If you would like to learn more details about small fiber neuropathy and options for testing for it, here is a technical slideshow.

Now that you know all about my small fiber neuropathy, which is old news, I feel I can tell you about my new nerve pain, which seems to be large fiber related. I woke up one day with sharp pain along all 4 of my limbs, hip to toes, shoulders to finger tips. It felt nothing like the small fiber neuropathy burning sensation I am used to. It not only hurt when it first began, it also caused my pinkies and toes to involuntarily curl.

The reason I think the pain involves large fiber nerves is because the pain in my arms is my ulnar nerve, without a doubt. How can I be so sure? Well, your ulnar nerve is what causes pain when you hit your funny bone, which as I am sure you know, is a distinct pain, which follows a distinct path. One day while the pain was occurring, I hit my funny bone, and it didn’t even hurt (because my ulnar nerve already felt that way), rather I knew I had hit it because of the numb/tingly feeling.

Obviously, I wanted to know what in the world was going on! What I was told and have accepted for now, is it is either large nerve fiber issues, or small fiber neuropathy somehow aggravating the large nerve fibers. I am not clear on that, and my impression is my medical team is not either. The pain occurs daily, but is no longer 24/7, and there is not any curling. If it gets bad again, we will do large fiber nerve testing, which is what electromyograms (EMG) and nerve conduction velocity (NCV) studies look at.

Post-Meningitis Issues: Headaches and Blurred Vision

Ever since I experienced aseptic meningitis as a side effect of IVIG in January 2015, I have had two issues which I did not have before – blurry distance vision and a new type of headaches.

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my beloved headache hat

I have had about 15 days in the past 18 months where I did not have a headache. They leave me even more sound and light sensitive than I was before, and the pain encompasses my entire head, with there being a sense of pressure in the parietal and temporal areas. Nothing seems to help them. I have tried stress management techniques, dietary changes, caffeine, aspirin, Tylenol, Tramadol, Celebrex (NSAID), Vitamin B2, and Gabapentin. I have not tried Topamax or Butterbur. This is because prior to doing so, I will need to change the hormones I take to control my menstrual cycle, and…. Well, I am not doing that quite yet. A MR myelgram, which came back all clear, was performed 6 months ago to check for any signs of a spontaneous cerebral spinal fluid leak (CSF leak = when spinal cord pops a leak). An MRI was performed a few days ago to be sure there is nothing going on in my noggin we could find to blame. There is not. This news is both encouraging and frustrating all at the same time. Perhaps I simply have post-meningitis headaches, a known issue, for which researchers (of course!!) are not 100% clear on the source of or how to help.

I had to.
We have an uncanny resemblance.

The day before meningitis, I had no blurry vision whatsoever. From that day forward, I did. It seems pretty clearly connected, however we are not sure how. I waited over a year and a half to get my eyes checked. The blurred vision was attributed to the headaches, which seemed to mean there may not be much point to an eye exam. Headache visual issues are not typically correctable with lenses. Therefore, it seemed as though the issue to focus on was the headaches, which if resolved, would also resolve the visual issues. Also, if I am being honest, I had so many other medical appointments, time on the phone with insurance, time spent managing symptoms, time spent researching, I did not feel like explaining the entire story to a new provider and getting them checked. When there is extra time, I want to do something fun! I also felt comfortable with not seeing an eye doctor because 6 months prior to meningitis, I had an extremely thorough workup from a neuro-opthalmologist (plus 2 of her residents), and my vision was absolutely pristine. (The sarcastic voice in my head says, “Yeah, and you don’t think having brain inflammation could make the exam you had 6 months prior irrelevant?) Anyways, I think I have given enough excuses. I certainly wouldn’t promote following my lead; I should have gotten my eyes checked.

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waiting for my MRI

What I found out when I went: I seem to be an odd duck and developed myopia (near nearsightedness) at age 26. At first, the optometrist (I know; optometrists are not medical doctors) thought the myopia may be from reading too much. Too much near work can trigger spasms of accommodation. We tried correcting this by me using reading glasses in order to relax the muscles, so perhaps when I looked in the distance, the muscles would relax and accommodate, however, I guess it wasn’t meant to be. Based on my research, there is a possibility Mestinon is the culprit since medication which increases parasympathetic activity can cause spasms of accommodation (seizure meds are a common culprit too). The good news is, it is correctable with lenses! I dislike these frames immensely. I had picked them out for reading glasses, but oh well. When I have the energy, I may inquire if my eyes are too dry for contacts.

My neurologist said it is typically the case that if a visual disturbance is correctable with glasses, it is less likely to be neurological in origin, however this isn’t always the case. Since the myopia is getting worse as time goes on, my neurologist suggested seeing an ophthalmologist for a second opinion. Here is yet another spot where I would not promote following my lead with my eye care. I purposefully chose an optometrist because I didn’t want another new doctor. I figured an optometrist would make me explain less of my medical history than an ophthalmologist, and I was feeling burnt out on explaining my medical history. All I wanted to know was if glasses would allow me to be able to see signs on the side of the road, and I figured if anything was obviously wrong, he would notice. Who knows why I knowingly went the route of a less informed provider? All I know is I am enjoying the world in high definition with my new glasses.

Another New Doctor

In addition to finding an ophthalmologist (which I am procrastinating on), I have to see another new doctor – an endocrinologist. Here is how I react to the thought of adding a new doctor:

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In this case, I know an endocrinologist is required. When adding a new doctor to the team is an inevitabliy, I remind myself of the fact that nearly all of my current doctors were once a new doctor who I begged another doctor to not force me to go see.

Why do I need an endocrinologist? I am highly positive for an autoantibody seen in autoimmune adrenalitis. The autoantibody is called 21-hydroxylase. Based on precursory testing (morning ACTH and cortisol), it appears I do not have Addison’s Disease at this time, however I do need evaluated and followed by an endocrinologist. It is highly probable the positive is due to the ongoing systemic autoimmune issues (Sjogren’s Syndrome, and perhaps an autoimmune disease without a name yet) I have going on. When you have a systemic autoimmune disease, pretty much any organ in your entire body is fair game. Your body will make antibodies against itself, much like it makes antibodies against bacteria or viruses when you have an infection…. except instead of attacking pathogens, your body attacks itself. Poor confused body!

Physical Therapy

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I decided (with the encouragement of my husband and mom – thank you) to retry physical therapy, with the goal being to reduce back pain. I hoped a reduction in back pain would lead to a reduction in headaches. While my pain isn’t much better, I am beginning to see an increase in muscle tone! This is encouraging because all of the exercises I have been given are done lying flat, and do not take too much energy. I am not going to write too much on this right now, because I am going to write a post specifically about physical therapy in the future.

Phew!

It hasn’t been all doom and gloom. I continue to have supportive family and friends, my husband and I recently celebrated our one year wedding anniversary, my stepdaughter (6) continues to be the sweetest, sassiest little girl I know, and I continue to be capable of researching my conditions. I plan to provide proof of said positives in my life in an upcoming post. I continue to believe things will, at a minimum, get more stable.

If you made it through this entire thing, I am extremely impressed. This was a long post. You must either be my family and love me, or suffer from similar issues as I do! If there is any other explanation, please let me know what it is. 😀 I know I should break posts like this up into several smaller posts, however…. I wanted to update everyone in one go!

If you have e-mailed or messaged me and I have not responded, I apologize. I hope to respond to everyone soon.

I plan to be back to regularly posting new content – what would you like to read posts about?

25 thoughts on “Lack of Posts Brought to You by Poor Health and Insurance Companies

  1. I am so happy to read your post because I missed them. I’m sorry you have neuropathy. As you might know, I suffer from it as well. It’s from a nerve injury and not an ailing body. It sucks so I understand the pain. I am thinking of you.

    Liked by 1 person

  2. So sorry you have been having so many problems Jackie. I so wish we lived closer so that I could see you more often and do some things to help you. You are always in my prayers and I love you bunches. I don’t know if I could keep that smile on my face if I felt like you do. You are the bravest person I know!

    Liked by 1 person

  3. Thanks for posting. I’m so sorry for all you’ve gone through, but know you’re not alone! My wife has an insane number of health issues as well, where her everyday life, similar to you is managing her illnesses and pain. Surgery on Monday, to hopefully relieve some of it! Your posts always remind me that her and I aren’t the only ones our age going through things like this!! Kudos to your husband, as I know what it’s like to be the husband, caretaker, and run the household (cooking, cleaning, shopping, etc.) I can’t imagine having a 6 year old on top of it! So happy Father’s Day to him, he must be an incredible man!

    Stay strong, and here’s to more good days than bad 😀

    Liked by 1 person

    1. Thanks for sharing a bit of your story. It sounds like you’re a wonderful support to your wife. I hope her surgery Monday is successful at relieving some of her pain, and her recovery is quick. You both sound like strong people!

      My husband definitely is an incredible man, and I don’t know what I would do without him. It isn’t easy for either person to be going through all of this at such a young age, however I think it can have the silver lining of bringing couples closer together. We make a great team, and our outside support system makes it all possible with all they do to help us!

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  4. Thank you so much for your update and your honesty. I’m so sorry you have been struggling so much and I can’t believe your doctor broke up with you. What? I feel the need to break up with my doctor who is a POTS specialist and even though I have had 3 tilt table tests to prove to him I still have POTS he still thinks I have anxiety and depression because I have not recovered in his time frame. There is no shame in mental illness and if that was what I had I would get treated for that, but that is not the case. So frustrating, but I am putting it off because I also hate going to new doctors- who will probably just read his notes and think the same thing. I hope you found someone new who is much better and can help.
    The whole IVIG situation must be driving you crazy. What about a go fund me page to try to raise money? I keep thinking how maybe Ellen Degeneres would help? I don’t know- I just love her willingness to help people out who need it. You have helped so many people maybe this is your turn. I could write to her if you wanted me to. Anyways- I hope today is a good day!

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    1. Thanks for reading!

      What in the world is your POTS specialist thinking? Do you have copies of your tilt tests and reports? If you don’t, definitely get them! POTS diagnosis, as it sounds like you know, isn’t subjective. It requires a sustained increase of 30 beats per minute (40 beats for age 19 and under), or above 120 beats per minute, when tilted from supine to upright, and in the absence of significant hypotension. There’s not really room for opinion in that criteria… If someone meets it they meet it!

      There are all sorts of reasons for patients with POTS to not recover, including autonomic neuropathy! Exercise is extremely important in order to avoid getting worse, however exercise will not reverse nerve damage. There are many root causes of POTS that cannot be cured with exercise, as it sounds like you might be aware.

      I dread meeting new doctors SO much, and have had similar fears of what their impressions of me might be. So much hope is placed in new doctors, and it’s such a letdown when they end up being unhelpful. However, it sounds as though continuing on with the doctor you have might be even worse than the process of finding a new doctor is. Like I said in my post, all of my current doctors were once “new” doctors who I stressed over meeting… (Don’t think this means I wouldn’t be unhappy to hear I have to find another new doctor LOL) If you aren’t a member of the POTS group on Facebook, perhaps you could join it. Then, you could ask if there are any other POTS patients in your area who could provide doctor recommendations.

      Also, have you had a psych evaluation? I had one done back when my diagnosis is Chronic Fatigue Syndrome. Having the all clear from psychiatry allowed the doctors to feel comfortable in focusing on others causes of my symptoms. I’ve been meaning to write a post about this!

      Alright – let me hop off my soapbox.

      I did a Go Fund Me page a few years ago to help me get to the biofeedback center in Dallas. I am not doing one again because I may need to be on IVIG treatment for years, it costs 7,500-15,000 a month (depends on various factors), and it isn’t guaranteed to work. My doctor is trying to secure 12 months of treatment because that’s how long it would take to know if it will work for sure or not. Compared to my other options and based on what I’ve read, IVIG seems more likely to work, definitely at least equally likely to work, and is much less dangerous to use longterm. If I regained enough of my health to no longer be disabled, I could even be pregnant while taking it! My other options aren’t any more likely to work, and require you’re off them for months prior to trying to conceive. They also tank the immune system. Treatment of systemic issues in Sjogren’s isn’t a well researched topic – that’s what going on with all this “possibly” wording I am using.

      If you wanted to write Ellen, I certainly wouldn’t protest, but there is absolutely no pressure. 🙂 You’re very sweet, and I am touched by how much you care!

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      1. Thank you so much for getting mad right along with me! I do have copies of my tilt table tests and I clearly have POTS. My heart rate does not elevate enough when he checks me standing in his office in the one minute that he waits, but on the tilt table it has a sustained increase of 50 beats per minute. I was diagnosed 8 years ago, was very sick for 2 years, then was very lucky to slowly recover. I’m am lucky that most of the time I am able to exercise and it really helps me. I had about 2 years where I felt really well, not perfect, but good, and was able to come off all my meds. It came back about a year and a half ago for reasons we can’t figure out, although I was very stressed because my son had a serious concussion from hockey so I am guessing that played a role. I have had the same Doctor the whole time and I used to really like him, he is optimistic and has really helped me, but since it has come back he has really doubted me because it isn’t supposed to come back. He actually doesn’t tell me this, but unfortunately I get copies of his notes- I think I would be better off it I didn’t! I see him again in July so I will have the difficult conversation with him and if we can’t agree I will move on. Ironically I will be very nervous talking to him and will probably get very anxious which will support his theory even more. I am a nurse so very familiar with the medical world so I just can’t understand why patients get treated so poorly. Luckily, I love my cardiologist who tells me he knows I am not depressed, who believes I will recover again, and who admits there is so many things we don’t know about POTS. So refreshing! My primary care doctor is also good in sending me to every specialist he can think of to look for an underlying cause which they haven’t found anything. Like you, I am also blessed with the best husband and family and friends who have never doubted me- that makes everything easier!

        You asked about topics of new posts? My favorites are when you write about how you handle your big days- would love to hear about your wedding day. I loved your post about your honeymoon- it actually inspired me to go away with my family last summer when I really felt too sick to go. So thank you!

        I am writing to Ellen- we can try to save the world one person at a time 😊

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        1. I am curious how come your POTS doctor is considered an expert if he doesn’t realize setbacks are common, especially if something changes, such as someone experiencing a large amount of physical or mental stress. What is expected versus not expected depends on so many factors, including the root cause of a particular case POTS. Nearly all of the recent literature reflects this! I really hope this is a miscommunication of some sort and you two can get on the same page, because it sounds as though he is a doctor you previously trusted a great deal.

          Thanks for writing Ellen on my behalf! As my mom likes to say, if you don’t ask, the answer is always no. Thanks for asking for me. 🙂

          Like

          1. I wish I could bring you to my appointment with me. When you are better you should become a patient advocate- you would be great!

            I wrote to Ellen! My boys were laughing at me when I was doing it, but I’m hoping to teach them the same lessons your mother taught you 😊

            Liked by 1 person

            1. I think I would enjoy being a patient advocate. If I go into that field once I get better, the past 4.5 years off work won’t be a gap in my resume, they will be relevant experience!

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  5. I suffer with similar issues. I have NCS and gastroparesis so far. My health is failing for the past 7 years and it encourages me to see how others cope with the mysteries we uncover about your bodies.

    Liked by 1 person

  6. Ha. I made it through. Took me two different sessions though.—-Although not a way I condone, I know what you mean about fasting to feel better. I found that to be the case too. I found it interesting to read on water fasting on the internet. (I am NOT telling ANYONE to fast! Just simply saying it is fascinating. And there’s literature now coming out in research to support it.)

    Think of you often, Terri

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  7. Sorry to hear that things aren’t better. I have similar health issues and have been diagnosed with POTS, Ehlers-Danlos and Mast Cell Activation Syndrome. I was also misdiagnosed with Addison’s for about five years so I know what that world is like as well. Thanks for your willingness to share your journey. I hope you find answers and relief soon.

    Liked by 1 person

    1. Wow! Were you diagnosed with Addison’s based on a cortisol and ACTH stimulation test? That has to be a tough one to endure the aftermath of having been misdiagnosed with because of the medicine involved in treating it. I am happy you seem to be on the right path now in terms of diagnoses, but wish you couldn’t relate to my story! Thanks for reading.

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      1. I was diagnosed with Addison’s after a few low and borderline low morning cortisol levels and an insulin tolerance test. Insulin tolerance is an older test, but my doctor preferred it for some reason that I can’t remember. Getting off of steroids was really difficult, but it was nice to have a break from being sick.

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  8. I commented before but I would like hear about day to day getting by or how you cope with everything. It is overwhelming at times for me and anything you can share will be helpful I am sure

    Liked by 1 person

    1. Thank you for commenting again! I would like to get in the habit of writing frequent, short posts, and the type of post you are talking about would be great for that.

      I am no pro myself, and continue to master figuring out balancing my health needs, relationships, housekeeping type stuff, and *gasp* having fun. I will definitely put this topic on my list. 🙂

      Like

  9. Long or short, your posts are always informative and uplifting. I hope you find a great replacement for your “break up” doctor. I understand how frustrating this can be. Hang in there. Always here if want to talk! Maybe one day we can compare BUNs and ACTH/Cortisol results. 🙂

    Like

    1. Thank you! Fortunately I don’t even need to replace the break up doctor because my other doctors can take over the bit she did. And comparing test results — we know how to have a good time!! 😀

      Like

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