Not a Cat, Not a Brain…

Not a cat, not a brain, nothing.

Not a cat. Not a brain. Nothing.

I got all of my test results back and found out that I have…absolutely nothing. This is the way it’s been for the past 30+ years. Nothing shows up in blood work or X rays, so technically I am healthy.

My veins object to people trying to take what is theirs.

The reason I went to a doctor was to get a prescription for eye drops so that hopefully I could go back to doing computer work and painting. The insurance company, however, determined that the eye drops are “medically unnecessary”, so here I sit with no computer or paints, trying to figure out a future with limited eye usage.

Did you know there is such a thing as ocular rosacea? I didn’t.

A friend sent me a few articles on supplements that seem to help people like me who are having odd, random symptoms. Perhaps one or a combination of them might get me to a point where I can at least draw some Bitey Dogs again.

Toby seems to have an opinion on all that is going on, but he only knows how to express himself as a growling, tantrum-throwing fiend. He has attacked me three times in the past two weeks. They say God sends you the family you are supposed to have. I must have really ticked Him off at some point.

What are you looking at? Grrrr….

On an unrelated note, if you haven’t seen the movie The Miracle at Cokeville, it is a particularly uplifting story given recent events.

44 Comments

  1. Oh, goodness, can I relate to this. I spent decades trying to find out what’s wrong with me and finally, in desperation, practically bedridden 24/7, I went to an immunologist who figured out I have mast cell disease. A lifetime of suffering and being told I’m imagining my symptoms (all the tests came back normal!) and it finally had a name and treatment. It’s been a long journey but I am much better now, six years later. I do so hope you get answers soon. Hang in there. xo

      • It has all of them. It’s an immune cell so I suffered from a long list of symptoms in every system from head to toe since birth (I still do but it’s controlled with meds). Gastro problems, neurological (balance, always hot or cold, dizzy, fainting, seizures), gyno problems like endometriosis, nerve pain, joint pain, rashes, severe fatigue, hands and feet tingling, urinary pain, hip pain, bone pain, eye pain & vision loss, inflamed gums, it’s just so many things. Sensitivity to light and sound, ringing in my ears, eye twitches, random stabbing pain, depression, anxiety, runny/stuffy nose, allergy symptoms and also weird reactions to medicines including birth control, antihistamines, pain pills and anesthesia. I could go on and on! If any of this sounds familiar look up mast cell activation syndrome just in case. Getting diagnosed changed my life!

          • Yes, so I look like a hypochondriac and the tests they’d run always come back normal (ugghh!). It turns out I have a ton of food and other triggers (not true allergies) that set me off and it can take days to take effect sometimes and can go for days, weeks, months or years depending on what I’m exposed to. It’s basically a hyperactive immune system issue. It has changed a bit over the years and got really bad after I was stung by a wasp 3x in less than a year. Each reaction was worse and I had full anaphylaxis after that. Until then it was mostly inflammatory symptoms from head to toe and they kept giving me antibiotics but it didn’t help. Nothing helped until I got mast cell stabilizers!

  2. I am so sorry they haven’t figured out what is causing your symptoms. As for the insurance not wanting to pay for your eye drops, has the doctor contacted them saying they are necessary? Sometimes having the doctor fight for you will help. You may be able to afford the drops with a GoodRx card. The mail order pharmacy Eagle Pharmacy got a good deal on eye drops for me. My insurance company wouldn’t cover them.

  3. I am sorry you did not get any answers. If you died, that would show them, but I don’t advise it. I wish you had an answer about Toby. Since no one else will I will give you an answer: What is the capitol of Kansas? ANSWER: Topeka.

  4. Regarding the prescription eye drops: are they some sort of dry eye drops that are preservative free? Are they steroid containing drops? I don’t really understand why they are so expensive. ’m guessing to be that expensive that they are still under patent with the pharmaceutical company that created them. A lot of questions about eye drops, I know.

    Incidentally, I’m glad you didn’t receive a diagnosis of MS. You worried me the way your downplayed it. MS is a very bad diagnosis and almost guarantees full disability. You’d need to make all kinds of provisions now while you’re still ambulatory, I know a 39 year old who can no longer walk steps. I know a 54 year old who is now in the falling stage and has become incontinent. Almost all neurological diseases are incurable and progressive.

    I’ll await your response on the eye drops!

    • The eye drops have a generic form, so I am thinking they are no longer under patent. The generic is only slightly cheaper than the brand, sadly.

      I most likely do have a neurological condition based on my symptoms, just not MS. I’m sorry to hear about your friends. That is an awful way to have to live.

  5. I SEND YOU LOVE ND UNDERSTANDING.I BRUISE EXACTLY TE AME I HAVE lTHE SAME FIGHTS WITH INSURANCE SUITS WHO THINK A STETHOSCOPE IS FOR CRACKING SAFES iI TOO AM SICK OF KNOW NOHNG INSURANCE GREY SUITS DEAR ONE I SO FEEL FOR YOU. WISH I GAD ANSWERS, ENDING MY LOVE AND SOLIDARITY TO YOU SISTER
    HUGSSSSSS

  6. The generic form is $750?!!!
    I was gonna guess that for dry eye the doctor. might either prescribe Xiidra or Restasis. These cost $550 and $250 respectively for a 30 day supply. I believe they both are under patent still.
    Mark Cuban has an online pharmacy that cuts out the middle man, maybe see if he has what you need there.
    I use a human eye drop for my pup. It’s not widely available, but is preservative free, made in the USA, has single dose vial and a longer term use bottle. I spoke to a woman at the company in Las Angeles and learned a great deal about the product. And since my girl has very nice insurance it is covered 90%. It’s sold at limited locations, but I found it at a downtown eye doctor’s office.
    So much to chat about, but I’m glad you don’t have MS. At least another potential puzzle piece has been eliminated and onward to the next.

  7. Oh, my! I’m so sorry you didn’t get any answers. 😦 It’s a bummer to feel bad, know things aren’t right, take tests and be told “you’re fine” or “we can’t find anything”. 😦 I do send love and hugs to you! Oh, gosh, your poor arms! 😦

    I’ve had that happen to me with a couple medical issues in my life. I have a family member who tells me, “Well, some day when they finally figure it out you got, they’ll name it after you.” AND “When you die we’ll put “Hey, Doctors, I told you I was sick!” on your tombstone. Yes, my family members are a hoot! 😉

    I have a heart condition I was born with and then, like 30+ years ago, I thought I had something else wrong with my heart…I would feel like I was gonna’ die, the pain was so bad. After MANY trips to ER’s, MANY heart-med-tests, going to the bestest cardiologists for years and in big cities, an ER doc in a small rural town told me I had Costochondritis and how to treat it. It is an inflammation of the chest muscles and cartilage that connects the ribs to the breastbone. When I went to my regular GP and told her about the diagnosis, she said, “Oh, that’s a VERY painful condition!” I wanted to say “Duh! I’ve been telling you and other doctors about my chest pain for decades.” Oh, well. But, Yay for that ER doc! 🙂

    Oh, poor Toby! He must be reacting to all that you’ve been going through. I think our pups pick up on our stress, health issues, emotions, etc., even when we think we are hiding such things from them.

    I hope a way can be found to get the eye drops to you that you need. Let us know what happens. We care about you! ❤️

    (((HUGS)))
    PS…your title and your drawing made me laugh! I’ve been there, done that! 😮 😀

  8. I wanted to tell you we watched a show on TV called American Rescue Dog Show. They had different categories that rescue dogs and their human-beans were participating in. One category was “Best Talker”. And of all the talking dogs they had competing, NONE of them could talk as well as Toby!

  9. I am so sorry that you have no solution from the tests….and am horrified by the state of your arms afterwards. Where do they train these people….cross stitch workshops?
    If anything shows up the iniquities of private medicine it is the reaction of your insurer… case of ‘computer says no’, it would seem.
    Do you reckon Toby is reacting to how you are feeling? Bet you wish he would bite your insurers.

  10. Probably a dumb question, but with all that bruising and blood taken for labs was your Vitamin D level tested?

    Maybe discuss the issue with Toby. He seems to be acting out a bit, He’s probably worried about you.
    As for your family’s response just give them a great big Gomer Pyle “for shame! for shame! for shame!” I honestly don’t think I’d be around anyone if they called me a witch with a “b”.

    And I see the movie you named is on Amazon Prime, so I may just stream it this weekend. For some weird reason the last two weekends have felt like Memorial Day weekend, so now this weekend does not feel like it. So weird! I’ve been avoiding the news. It’s so unbelievably heartbreaking. Something uplifting will be nice.

    I hope you know that people do care about you. Even over the murky veil of the internet and this ether that carries communication across the miles.

    • I watched the movie with family and didn’t pay attention to where they found it. It made quite the impression on us.

      Aw, thank you so much for the concern and kindness. No one around here takes me seriously. If I dare to say I am having a problem, I can’t even finish the sentence without someone interrupting, saying “Oh, you think you have problems sister! Let me tell you about…” 🙄

      They did do a second blood draw checking D3 (extra bruising. Yay.), but so far I have not seen the results. I have a follow up appointment coming, so I’ll have to ask about it then.

  11. A lot of medical facilities have online portals now, so you can see test results even before the doctors in some cases. For D3 they called the same day. I was low, couldn’t believe it. D3 helps with immunity, mood and a whole host of other things. I’m not sure how I was so low since I drink a lot of milk, but I’m not a fan of sun. For whatever reason I strongly suspect you have an auto-immune disorder. I think these historically are hard to diagnose. You really need a doctor who is strongly skilled in critical thinking and differential diagnosing. I’d love to have a concierge doctor, but sadly this isn’t a thing is around here.

    My sister is an LPN, RN, BSN, MSN and NP (whooo, that’s a lot of N’s !!). She’s also a BM, which cracks me up (bachelor of music). She said when people were admitted with Covid the first thing they tested for was Vitamin D. She gave me the list of meds that they give and quercetin (mentioned above) was was on that list. I don’t know anything about mast cell disease, but it seems immunity related. I really hope you get more of an answer from the immunologist.

    I don’t know what to tell you about intolerant people, but my approach is to fight back only if required, but mostly to walk away and move on. Life is too short for much else.

    God bless you.

  12. Well, here’s my numbers:
    September 10, 2021: 21.3
    April 15, 2022: 33.8

    The 21.3 is considered borderline deficient. Below 20 is severely deficient. 30-50 is considered in a good range. I’d have to ask my sister what the D-hydrox numbers were sickest covid patients. She’s normally a cardiology nurse, but (as she calls it) “nursing for dollars” can be profitable. I should add the assays may vary with labs. The doctor prescribed for me one 50,000 I.U. capsule per week, but I didn’t tolerate that very well. This mega-dosing is a newer concept for vitamin D deficiency to build up the blood serum level faster. I got this from the pharmacy. One month supply (4 pills) was $1.00. But like I said, I didn’t tolerate it well. I have a wool allergy, itchy eyes, itchy throat, skin irritation from the wool fibers. The thing about wool allergies is that it’s really a reaction to lanolin and vitamin D pills are made out of sheep lanolin wool fat. It’s really cheap to do, the lanolin extracted from one Australian sheep’s wool coat can make thousands of capsules. So I had to stop the mega dosing and find my own vegetarian source. But with this mega- dosing lanolin sourced D is a problem for some people. The doctor lowered my dose to 4,000 I.U. daily. The math made no sense to me, since that equals 28,000 weekly compared to the prescription pill which was 50,000 weekly. Anyway, so I decided to make it 5,000 daily, which makes more sense when buying the pills! I got them myself at a local natural food, independently owned store in my town. And actually I did okay on the lanolin in the smaller doses pills.
    I was supposed to re-test in December, but had a sudden surgery come up that happened on December 22rd. I was so sick that I dropped the vitamin D for a while and most foods, too. But I started again in January and finally got back for a blood draw and the script in mid-April.
    Incidentally, my doctor lowered my daily vitamin D to 3,000 per day with another re-test in mid-summer. But I’ll probably wait to do this along with other blood work until August, so I only have to pay one $5 co-pay. And although I’m not a fan of the sun, I do get more in the summer, I just got a nose burn on Saturday from just sitting in the car.
    And finally, Vitamin D is fat soluble and needs to be taken with a fat food, even just a yogurt cup that isn’t fat-free. K2 is also recommended, but for some reason doctor s must have been absent during that day of medical school. This is why a lot of Vit.D3 is in a combo pill with K. I take a 50 mg of that. I figure I can get other K from food sources. This is all synergy. The vitamin D, calcium and K. It’s really important for women above a certain age, especially if petite. Osteoporosis bone fractures seem to be a good route to lowering quality of life and even hastening death (statistically proven).

    I actually think that it’s well acknowledged now that the FDA requirement for Vit, D are too low. Most seem to think that 2,000 IU daily is safe. Some chiropractors even consider up to 5,000 to be safe. There is a slight chance of toxicity, but most people are on the lower side, so that risk is minimal. But that being said, it’s good to know the lab numbers.

    And here’s trivia! The Vitamin D Hydroxy test is a word related to sunshine and health, so way back when there were Hydrox Cookeis (the Oreos better cousin) and they were named in relation to health and sunshine. I believe they were by the Sunshine Baking Company. They were sooooo much better than Oreos. I once did a dunk timing test and the Hydrox held up far better, and they were never made with palm oil, unlike their loser, later-coming Oreo cousin.

    Oh, and don’t feel bad for me with the wool allergy. It just means that I’m relegated to cashmere. 🙂

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