I am writing a delayed letter about my first visit with Dr. M---. I have been extremely sick and dealing with other things so have not thought again about writing the letter I should have written immediately after my visit. I am writing it now.
My name is Tasha... I have been a patient at your practice under Dr. J--- and Dr. F--- for 3.5 years, my whole time living in Florida. I have been very happy with the office staff, A--- and C--- have been such a blessing to me, they feel like special supportive friends. Dr. J--- was so sweet, I was so sad when he retired. Dr. F--- I really respect. Even though it is no secret we have differing opinions of what diet I should be eating (I am a fruitarian), we have worked respectfully together for a couple of years now.
Dr. F--- has made it no secret that he is not a fan of my diet, but he has seen my lab results and continuous glucose monitor readings and has affirmed that I am doing a good job with it. I’ve gotten off of my epilepsy medication on this diet, no longer have low blood sugar seizures, have much better glucose control and A1cs, am much more sensitive to insulin, and Dr. F--- says I do the same amount of insulin as his other patients, despite eating 3x as many carbs. I do this diet for healing purposes. I’ve also reversed my diabetic retinopathy on this diet, something that showed up for several years on my diabetic eye exams, but now has progressively gone away.
Despite eating what I consider to be the healthiest diet I can (pretty much every medical condition I know of is reversed by eating this way), and experiencing many, many health improvements from eating this way, I haven’t gotten the stellar health that other fruitarians rave about. Ulltramarathoners and ironman triathletes and bodybuilders eat this way, and so many people have totally changed their health from falling apart to stellar/amazing. I haven’t been able to figure out why it hasn't happened for me. Well, now we know.
The past 8 months of my life have been a living hell. We found toxic mold in our apartment, after wondering why the air in it was so bad that we needed respirator masks to breathe in it, and breathing was much better outside (thus, NOT allergies). We moved to get out of the moldy environment, got rid of everything with visible mold, and started over in a new place. We didn’t know about mold spores then.
We brought the mold problem with us because the spores had spread to everything we owned. I stayed in that environment 24/7, cleaning, getting rid of stuff, cleaning, getting rid of stuff. For 3 weeks I tried, exhausted, health totally trashed, falling apart, in every way, emotionally and physically. And we gave up. We couldn’t win against the mold. We heard from so many others that were in this situation and had to get rid of everything they owned to get rid of the toxic mold. So we did it too.
We left everything behind, nowhere to go, stayed in hotels, in friends’ houses, bought a tent and camped, etc. Hotels, I’ve since learned, often have mold problems, esp in Florida, and we stayed in one that was absolutely horrible. My head was pounding, throat swelling up, insides of me were exploding, my body screamed, I’ve got to get out of here or I’m going to die (classic mold symptoms).
After that night in the hotel, my immune system was totally on fire. I couldn’t go into any public place because my body reacted to cleaning chemicals, fragrances, pesticides, car fumes, paint, contruction chemicals, etc etc etc. I wore a respirator mask to be able to function in public, because it filtered the air and helped me not have all the symptoms. Multiple chemical sensitivity happens to those who move out of toxic mold environments; I’ve never heard of anyone who didn’t get it after living in toxic mold.
We could not find any safe place to live. I couldn’t live in our apartment due to pounding headaches, burning lips, throat, eyes, weakness, extreme fatigue (where I knew I needed to get out of the chemicals but was too exhausted to do so), etc. I wore my mask 24/7, yes, even sleeping, which is not too comfortable. We were paying rent on our apartment and I was camping…until I couldn’t camp any longer because the smoke from campfires was bothering me once the campgrounds got busier. We ended up buying a pickup truck and aluminum camper top so I could sleep in that…still paying rent on an apartment I couldn’t live in.
We’ve moved four times in the last 8 months, first to escape the mold, then twice due to chemical sensitivities. We have now purchased an aluminum RV made to be mold-resistant and moved to an RV lot on the water so that I can sit outside and breathe in the fresh air. I am still sleeping in my truck at night, spending most of the days outside, and going in the RV as needed.
Meanwhile, my health has totally crashed. Mold attacks so many systems of the body so that it can make its home in it. Biggest is my gut, thus my deficiencies. Since I can’t digest fats or protein, I am quite deficient in amino acids and fatty acids. I am thus extremely weak. Many other systems are malfunctioning as well. Hormones get thrown out of whack from the environmental toxins, leading to estrogen dominance, and I most likely have breast cancer now...amongst other things. These hormone imbalances are also common for “moldies” like myself.
I’ve recently been told my inability to get well could be due to lyme disease being triggered by the mold. I’ve got almost all the symptoms of lyme disease, and mold and lyme go hand in hand. I’ll be tested for that at the end of this month. This is one condition that a fruitarian diet alone will not heal. More is needed to attack the lyme.
Meanwhile, our “new” RV has major manufacturing issues….but I won’t go into that. Suffice it to say, we are again wondering where we will live and how we will pay for everything we don’t have money to replace or buy. We’ve been entirely wiped out by the mold and all the doctor visits, lab tests, supplements, losses, etc.
So this is the background of what we were going through on the day I came to see Dr. M--- for the first time. I had just been doing tons of labwork with my new primary care doctor to figure out what was going on. I had a specialized test where I had to skip all supplements for 4 days prior, then fast until the bloodwork. My body was in terrible shape, but we had the appointment scheduled with Dr. M---, so we kept it. My husband brought me, because I could not walk on my own, I was so weak. Everything was overstimulating to me, my amino acids were so low. I was in very bad shape.
I tried to explain this to Dr. M---. I really did. I was lying on the table because I couldn’t sit up. When she tried to use the stethoscope on me and needed me to sit up, I couldn’t.
Dr. M--- was visibly frustrated, but I couldn’t help it. My body and my brain were not responding. I couldn’t think, couldn’t answer questions, was so flustered, my speech was slow and slurred.
Dr. M--- was hammering at me, about why I was wearing the mask. She asked if I wanted to wear it the rest of my life. I couldn’t believe how insensitive she was, especially in my condition. Why did she keep going on about the mask? It was helping me to not have symptoms, couldn’t she accept that? My visit was not about my mask.
She gave me suggestions for changes in my insulin pump settings. I listened and told her I would think about it. She couldn’t accept that. Why not? It is the patient’s right to choose how to do care! I have always told Dr. J--- and Dr. F--- that I would consider what they said. I don’t make changes in the office because I do a lot of testing and trial and error and analysis on my own at home.
I explained why I was having low blood sugars; it had to do with the fact that I was doing these lab tests and my body wasn’t digesting fats and protein. I explained that the high protein amounts I was taking to supplement my amino acid deficiency affected the speed of blood sugar rise and fall, really slowing things down. I explained that since my digestion had crashed, I couldn’t take the protein powder, and my blood sugars rose and fell much more quickly. I explained that I was used to bolusing insulin and then waiting a while before eating, and I was still in that habit, so sometimes I had low blood sugars because I forgot I needed to just eat after doing the insulin. I tried explaining several times, but she wasn’t listening!!!
I cannot explain how frustrating it was, in the horrible condition I was, trying to explain that I heard her, but there was a reason I wasn’t changing, things were temporary, I was doing a test, skipping my supplements for 4 days, so everything was different. And it was like all she heard was I REFUSE TO DO WHAT YOU ARE SUGGESTING. That was not the case at all!
And then she was hammering away at my husband, saying the same things to him, trying to make him change my pump rates, and it was absolutely ridiculous. I was thinking, are you serious? The noise in the room was maddening; my body couldn’t handle it, I was overstimulated to the max and I cried out, “Can you please just STOP!!! You aren’t listening, I’ve explained my point of view and my situation and you aren’t listening! We’ll think about it, I hear you, just please STOP!”
And at that point, Dr. M--- got up and left the room. And I busted out in tears. Bawling. Big Time Ugly Cry Session.
She had told me at some point during the visit that I needed another doctor to order my tests, and I already had one, a primary care doctor who has been ordering my tests for me. And she went off on how I needed a real doctor, not a mold doctor, this is ridiculous. She was lecturing me on all this stuff, as if I didn’t know my own experience. I felt belittled, abused, and terribly mistreated. It was the worst doctor visit of my life. I never wanted to see her again. But something in me said I should go back so that she can know what just happened. So that she can learn from this.
I tried to think of something I could apologize for, because I know there are two sides to every story. I apologize for busting out, she probably felt like I was disrespecting her. I just wanted her to listen and have some kind of kindness and appropriate “bedside manner”, especially for a patient in such horrible condition as myself (and she had heard why, and didn’t seem to even care).
So I do apologize for making a scene, I would not have chosen to do so. Even my husband was appalled at Dr. M---’s treatment of me. He even said out loud once, “Well that was insensitive!” to her and she just kept on going, not sure why she felt the need to abuse me emotionally in that way.
Dr. F---, C---, and A--- all know that yes, I am a sensitive person, but I work hard to treat people with respect and kindness. Even though I often disagree with Dr. F---, we can have a rational conversation together and agree to disagree. But at least he has made an effort to listen, and at the beginning of my mold stuff when I broke down in our office visit together, he showed compassion and softened his tone. I appreciated that.
I only switched to seeing Dr. M--- since we were moving far away and I didn’t want to drive so far for appointments, and Dr. M--- had an office near our new place. I had no problems with Dr. F---.
I still love the office staff there and really don’t want to switch practices, especially in the midst of all this stress, we’ve got enough going on, I don’t want to have to find a new doctor. Dr. F--- knows his stuff and is a good doctor, and I like him, even though we have our differences. I’m willing to drive for my appointments if necessary, they are not that often and I drive that way anyway once in a while for good fruit. As mentioned, I like the office staff very much.
I think if you talk to the other office staff, you would probably be able to believe that I am not just a belligerent patient who refuses to do what the doctor says or work with the doctor. I work hard at taking good care of my diabetes and my health. People call me a health freak. :) Yes, it was a bad day physically for me, but I have had multiple appointments on "bad days"; just had a thermography appointment on a "bad day" (with my health, I’ve got a lot of them these days). That doctor was so kind and understanding and worked with me, and had empathy. She had bedside manner. I felt so supported. Such a contrast to my visit with Dr. M---.
In my opinion, doctors should have a good bedside manner and should understand that patients sometimes are in tough places and be able to have empathy and not abuse them in a vulnerable state. C--- and A--- have compassion and bedside manner for sure! And doctors should listen to their patients too; it is supposed to be a RELATIONSHIP.
Whether or not you choose to let me come to your office again, I felt you needed to know this.
I actually was shocked that a discharge letter had been sent to US (though we didn’t get it because of our multiple moves). I felt that if anyone should get fired, it should be Dr. M---. I had compassion after settling down a bit, because I understand that doctors have bad days too, and we are all human and all have personal issues we need to work on. But in the moment, I responded as anyone in my position would. And later that day, still shocked at the treatment I had gotten from Dr. M---, I made a YouTube video called “worst doctor visit ever”. (I didn’t share the name of the doctor.) Just thought I’d mention this, in case someone might say I am just a disgruntled patient because I got discharged. If you’d like to view it, I’d be happy to send it your way.
Thanks for taking the time to read this.
I’d love to return to being a patient of Dr. F---, and I’d also love the opportunity to say hi to Dr. M--- and let her know that I forgive her, if she wants to be forgiven. I understand we all have growing to do, nobody’s perfect. I’ve certainly hurt many people in my lifetime. And I’m sorry that the whole thing even had to come up in this way, nobody would have asked for that situation. But it is what it is, and hopefully a growing experience for us all, if we will allow it.
A couple months later, gotta add this cool addendum.....copied from my Facebook wall:
Salute to an awesome doctor's office...and how blessings come about through crappiness...(gonna add this as an addendum to my previous endo doctor post below)
You may have read about the horrible experience I had with a new endocrinologist at my endo office a couple months ago...total lack of compassion, and actually what I would consider verbal/emotional abuse in that appointment where I showed up, falling apart from mold illness. They then discharged me from the practice. WHAT?!
What a headache this has been for me, in the midst of everything else. Type 1 diabetics need medication, so we need a doctor to prescribe those meds. I was forced to quickly find a new doc, had a lot of trouble doing so, go through the headache of switching everything over to a new doctor (still haven't done all that yet), got rescheduled/unable to get in for a few months, about to run out of meds, can't get prescriptions until seen, and the (old) endo office would only prescribe an emergency supply (which interferes with the mail order and insurance stuff).
I had already written a letter to the office, sharing my side of the story (http://www.tashalee.org/mcs/letter-to-an-insensitive-doctor), but I begged them in the midst of this, could I please just talk to my regular doctor? Please, why can't you just let me see him? This whole thing was not my fault, and is really a major hassle for me, when I don't need any more hassles!
And here's the good news....because they would not do a thing to help me and I couldn't wait to get in to the new doctor, I had to find yet another doctor and transfer everything over yet again. And this doctor, I could see within a week. So I went today.
I was still in terrible shape, collapsing, but needed prescriptions, so I went. THANKS TO YOUR PRAYERS, I made it! :) And it was an AWESOME visit!!!!!!!
Talk about compassion! They even had signs in there to please not wear perfume or cologne out of respect for those with allergies. I actually felt a lot better in there than in other doctor offices I have been in. They let me sit in the hallway where there was more air flow, got a wheelchair for me when I was collapsing, were so kind and caring, and worked with me! And the doctor himself...he was so kind!!!! I felt cared for and respected.
They wrote my prescriptions, ordered my blood tests, and believed me when I told them why I was wearing a mask and needed the door open or to sit in the hallway as much as possible. It was really really really great.
I am so grateful! Thank you God that I had to leave the non-compassionate doctor in order to find a wonderful new diabetes office, right at a hospital with ER in case I needed it (like I thought I might last night). Thankfully, I was feeling better enough today that I DIDN'T need it!
Beautiful. Interestingly enough, this doctor had just moved from an area badly affected by Hurricane Katrina. I asked him if he'd had many mold patients and told him that I'd seen some terribly moldy places when we were there working some years ago. He hadn't, though. He figured they went to other doctors. Interesting nonetheless, he seemed intrigued by that line of conversation...