Emory Turns Patient Away At Clinic; The Last Straw

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Butting heads

Just when I thought things couldn’t get any worse…on Thusday, June 30th they did. Transportation came late and my assistant and I were worried we’d get there too late to be seen at Dr. T’s office at Emory Sleep Medicine at  the 12 Executive Park location. The driver was confused and was about to take us to Clifton  Rd. (main campus) but I told him he was heading the wrong way and he turned around just in time stating his GPS was taking him the long way.

There was no time for wrong turns. I was on a mission to bring airline forms to Dr. T. and Dr. V. (whose offices luckily were in the same building) regarding my oxygen concentrator.

I’d printed out forms for both Delta and United figuring those were the most likely two that the GA. Medical Care Foundation might book the trips with. I would need one or the other of the two doctors to sign off on my need to bring my oxygen on board the plane so that I’d run into no problems when it came time to travel.

Document Signing

We got off the van and went to the 4th floor where Dr. T’s office was located. We arrived to find a packed waitingroom. There was a heavy-set black female patient at the front desk carrying out a lengthy transaction to reschedule an appointment. She was wearing a portable oxygen concentrator and the young receptionist behind the counter lingered, typing on her computer. It seemed as though I sat there for 5 minutes. I looked at my watch seeing it was 10:45 already and still not checked in. The last thing I needed was to be considered late on such a crucial day.

The night before I’d sent detailed messages via the Patient Portal to both doctors so that things would would go smoothly and hopefully the forms for the airlines would be signed and handed back to me while I was there, but no such luck.

As my assistant and I waited I saw Dr. T pass through the receptionist area. I waived expectantly to her and she made eye contact with me and smiled her acknowledgement on her way in and out of one of the adjacent rooms. All the while I had no idea what was to come. I thought she’d be coming out to see me shortly, but the next thing I knew a portly, middle-aged white woman with shoulder-length wavy blonde hair called me back.

“Hi” I greeted her. “Are you the nurse?”

The woman stammered a bit and explained that no she wasn’t but that she’d explain. I followed her to a room on the hallway to the left-side of the receptionist desk. As we entered one of the rooms she sat behind a small computer desk and I in my wheelchair, across from her. Not wanting to waste another minute I launched into my request about the airline forms that I needed the doctor to sign. I explained that I was due to travel on July 6th, just a few days away. It was clear from her response that she was fully aware of my Portal message from the night before, but she stopped me in mid-sentence.

“Before you get started, I need to tell you; I’m the Office Manager. Patient Relations has been calling us all morning telling us that you’ve been terminated from the clinic and that we aren’t allowed to see you. I was going to save you the trip over here but it seems you’d already left. Because of the termination I can’t give those forms to Dr. T. She won’t be able to speak with you or fill them out.”

I felt suddenly as though someone had punched me in the gut. I could hardly believe that after all this that Administration was still placing obstacles in my way. It was at this point that the full impact hit me. Tears began pouring from my eyes.

“Look”, I said. “This is what happened. I was abused in the ER in December and instead of doing the right thing and correcting the problem Administration is covering it up.”

“I don’t know the story” she replied.

“Well now you do,” I said looking her dead in the eye. “I am honest as the day is long! They called in a sadistic neurologist to scare me and he beat me with his hammer, then had his female resident come back into the room afterwards and plop her butt down on my foot. Then he put defamatory things in my chart to destroy all my doctor/patient relationships so I could never get help. This was an impaired professional with an anger management problem.

Goofy doctor

Think about it. If I were what they’re painting me as I would be in a mental hospital right now after the past 7 months of harrassment Administration has put me through since the incident. You have no idea the tactics I’ve been subjected to. I must be one hell of a strong woman to withstand all that and still be talking to you rationally as I am now! This is not right! I was the victim, not the perpetrator and now I’m being punished for something they did to me!

Vulnerability

“That’s all the more reason why you should probably get your care outside of here and start somewhere fresh” said the Office Manager.

Tears continued to flow down my cheeks. “This cannot be allowed to happen. This is not the time!”, I pleaded. “I’m actively ill! It’s not like I’m coming in for a routine check-up. I really needed this appointment. I’m so sick that I need to go out of town to these top level specialists to get more advanced testing than I can get here, but nevertheless, I still need my neurologists here locally to come back to afterwards. Dr. T treats me for the Myoclonus. and Dr. V  was fully intending to help me get these evaluations but Administration is sabotaging my trip!

Suitcase-travel

I’m supposed to leave on July 6th! I don’t have time to start over right now with all new doctors. Don’t you understand? I’m sick and need to go soon so they can find out why! I’m waking up multiple times a night choking and gasping for air. My hair is falling out. I’m Dysautonomic and nobody knows why. They can’t do it here in Georgia!” 

Plane in blue sky

“I’m not a clinical person”, said the blonde-haired woman. “I’m just an Office Manager so I don’t know what to tell you in regards to that.”

“Also, I need those sleep study tapes because the specialists need to see my abnormal movements for themselves. The reports don’t go into enough detail although they had some EMG leads on me. The report didn’t document the rate of the jerking, only said that they picked up the movements but that they weren’t PLM. They are some sort of Myoclonus but they don’t know what specifically. They present at the onset of sleep and only under certain other circumstances like when I’m lying on a hard surface or my upper body gets too cold.”

“The reports will be good enough. The problem with providing the tapes is that it requires a certain kind of software to view them that’s not compatible with anybody else’s.” On the face of it that sounded a flimsy excuse at best, and at worst it may have been a lie.

“These out-of-town appointments took months to get” I continued, “and if I have to reschedule it could be up to a year for me to get another appointment…And also…I need to tell you something. I have (condition that can’t be named at this time) which is a neuro disorder; not psych, and therefore I don’t do well with this sort of disruption to my life. What they’re doing is really not good for me.”

The Office Manager seemed to soften for a moment. “I understand, and I empathize, but there’s nothing I can do” she said lamely. “Because we’re not a private practice the doctors here have to go by what they say to do. It’s now in the hands of Patient Relations.”

“Patient Relations is just a mouthpiece for Administration”, I replied. “They aren’t going to do anything. Do you want to know what their idea of an investigation is? They ask the perpetrators what their side of the story is, write it up, and send it to the patient. That is not a fair and unbiased investigation! I used to work as a patient advocate. I was instrumental in designing the Protection & Advocacy system in the state of Georgia. I never did my investigations like that!

I pulled the forms from my white 3-ring binder. “Here. Give these to Dr. T. just in case. Without this I can’t board the plane with my oxygen concentrator.

Corporate

She needs to go to bat for me as my doctor! Have her tell Administration that blocking my care here and sabotaging my trip is putting the patient at risk. Have her advocate for me!” 

The office manager looked at me from across the desk. There was a sense of futility in her body language. I found it increasingly difficult to look at her.

It seemed as though tears came in waves and then in-between got stuck and wouldn’t come out. I felt as though the wind were knocked out of me. I covered my eyes and leaned forward in my wheelchair teetering on my seat. I opened my mouth and no sound would come out.

Somehow it seemed especially cruel knowing that Dr. T. was just a room or two away but could not come in and speak to me. They didn’t even have the decency to let me talk with her one last time.

Even that being the case, all they had to do was have her sign my forms and bring them back to me but The Almighty GD Administration was like a huge fart in the room, rancid and putrid and taking precedence over everything that was rational.

Death

The Office Manager was like a deer in the headlights, a lemming walking automatically over a cliff. Only one thought entered my mind at that moment. No job is worth casting a patient still in need of care out into the street to God-knows-what fate. The finality of it all fell like a thud to the floor.

Smashing an egg

After awhile she followed me out into the waitingroom, still packed with patients. I was still crying. My assistant was not where I’d left her. The Office Manager asked me her name, I told her and she said she’d try to look for her. At first she couldn’t find her but came back and took me back the other way to a waiting area that was less crowded.

“I’m just getting you more upset” she said turning to her right as if to leave.

“No you aren’t. It’s not you, it’s them” (meaning Administration). I reached out my hand and she took it. This was bigger than either of us. She asked if I could wait there for a minute and she’d try again to find my assistant. I nodded. In a few minutes she returned with her. The Office Manager explained to my assistant what she’d said to me about Administration not allowing Dr. T. to see me. I told her to ask Dr. T. to do everything she can to stand up for me.

My assistant turned to her. “So you’re basically saying that she needs to find all new doctors?”

“Yes, pretty much”, said the Office Manager.

“Let’s go call transportation” my assistant said to me, turning away from the woman in disgust. “We can do it from downstairs.”

“I need to give these other airline papers to Dr. V. on the 5th floor first and try to talk with her nurse before we go.” We headed toward the elevators in the main hallway. As we were leaving the Office Manager called out after us “It might be a waste of time for you to go down there because Dr. V. won’t be able to do what you need her to do, but you can try. Good luck with everything.”

The first one to arrive was too full, so we opted to wait for the next. Once on the 5th floor I approached the reception desk and asked to speak with J. Dr. V’s nurse and the receptionist told me she’d call her.

In just a few minutes J. came out and introduced herself. She told me Dr. V. was only here on Fridays. I told her the situation and asked her to ask Dr. V. to advocate for me and advised her to get in touch with the Union rep about this situation because Administration is putting pressure on medical professionals to act against the best interest of patients. She said she would and wrote some notes on a small post-it pad.

I handed her the airline forms and asked her to give them to Dr. V. The nurse said she’d call me. Once we’d gotten home I checked my phone messages and found both the confirmation of that day’s appointment and a later message from A.B. of Patient Relations stating the appointment was cancelled. The following is a sound file of the confirmation and the message from Patient Relations.

 By the time my assistant left at 3:30 PM on Friday no call from the nurse had come in yet to confirm that the form had been completed and faxed over. 

The next call on the tape is from a contact person at Medicaid informing me on June 1st that the GA. Medical Care foundation had still not received my paperwork from my doctor. Late last night I saw a Patient Portal Message. I logged in and it was a goodbye letter from Dr. V.

Corporate had prohibited her and any of my other doctors from seeing me. A message just underneath from the nurse which merely typed the instructions for the GA. Medical Care Foundation process implied that the paperwork had never been filled out or faxed, thwarted by the top brass at Emory Healthcare.

No reason was given to Dr. V for the “release” as Corporate so euphamistically referred to the expulsion (as the real reason; discrimination and retaliation for filing a complaint is against Federal law so they wouldn’t admit to that).

I wrote back to her telling her that I don’t think I can bring myself to start over again with a new neurologist, that I wanted to keep seeing her and that maybe she should contact the Union and tell Emory to take this job and shove it if they wouldn’t budge on this issue.

I left her my number and asked her to call me if/when she goes into practice somewhere else. I said that there is a shortage of good female neurologists in the Atlanta area and especially ones who really care about patients, and that I could tell she does. When you’re ill like I am and have been through what I have, being more than just a number, having a doctor who cares if you live or die and is truly invested in you is especially important.

Until I’d spoken with the nurse the other day I thought she’d worked there fulltime but in fact it’s only half a day on Fridays, so I guess it wouldn’t be any big financial loss if she decided to tell them to stick it up their collective posterior!

I cried most of the night and woke up crying again this morning.

We are not a bunch of chess pieces (patients and doctors) for Administration to move around at will!

Next Move

We are people with real relationships! To destroy those relationships which can even determine life and death for a patient is to do harm!

Logistically I don’t know what will happen to me now or who will fill out the forms necessary so that I can get the care I need.

Blood pressure

What the suits in the ivory tower fail to understand is that in order to do those kinds of things a relationship, a connection must be there and the doctor has to care about you. You can’t just find that in any doctor, and if a patient finds a good one it’s best to keep them.

I looked out there plenty before I saw Dr. V and after the first appointment (knowing Emory had her by the short-hairs) and I didn’t find it. Then as I got to know her I realised she was it. She would have done all that…if Administration hadn’t in effect held a gun to her head not to.

If you are a patient who has been mistreated at Emory please see this post; and contact me privately to give me your written signed statement. It’s never too late to make your voice heard.

 

Medical Resources for Low Income or Uninsured

Help

Recent events have gotten me thinking now about the need for linkage with services to help chronically ill people when it becomes necessary to seek help outside their local communities. To know just how big a need there is out there you have only to look at GoFundMe, Youtube, and a variety of other public online forums. There is help available but it’s not always well-publicized. The financial cost alone to travel out of state can end up more than you have.

Most of the specialty clinics don’t cover lodging, and consultations are usually done on an outpatient basis, so that often requires staying in a hotel for several days on your own dime. For many on a low income and/or uninsured, this is impossibility without some financial assistance. The question is; where to look? When I found out that my local Medicaid transportation broker doesn’t transport people for over 50 miles, and the hotel fee for 4 or 5 days in just one of the two cities I need to travel to next month was going to cost most of my Disability check and that I would be forced to default on my regular monthly bills (already behind) in order to go and receive the more advanced medical help I need I was frantic and really bummed out

Oh No

I was able to find a non-profit organization called The Georgia Medical Care Foundation that covers airfaire, lodging, and food for the time one has to be away for special testing, assessment, and/or treatment. This organization is connected with DFACS (Dept. of Family and Children’s Services).

If you live in Georgia and need financial assistance for such a medical trip have your doctor call (678) 527-3000 and have them fax him/her their application form. They will want to know your name, date of birth, dates and addresses of your travel, and possibly some medical information. Once the doctor fills it out, faxes it back, and you’re approved it then goes to Ginger Henry, the contact person at DFACS who cuts the check (404) 657-3596.

At first somebody gave me incorrect information that the funding was probably by reimbursement (which would have made this an inaccessible option for me), but when I spoke with another representative I was told that it is issued to the patient and/or airline/hotel up-front.

My neurologist, Dr. V. left word yesterday through one of her nurse practitioners that she’d be the one to fill out the form ( a big relief, since as of my last post no doctor had yet committed). I need to call my contact at Medicaid in the morning to follow up on where my application is in the process. I hope Dr. V. got it filled out and faxed back yesterday.

In my search earlier for other resources I found this webpage you might find useful which covers resources throughout the US that are available to help with various medical needs. There is also a section where you can search by state. You can also contact your state legislature to find out if they have set aside an indigent care fund (many states do). Your local representative can probably tell you if such a fund exists where you live and find out what the process and criteria is to access it.

There are also some illness-specific groups and organizations that will help financially.

I’m having alot of pain extending from the center of my spine inward to my abdomen, feeling as if someone has kicked me in the stomach, and waking up every few hours each night now with my body temperature all dysregulated; burning hot, then freezing cold, so I hope that the doctors at these clinics can find out what’s causing this and that there is some treatment that will get it stabilized at least. It is getting to be a bit too much.

Burning Up

I had about 2 weeks reprieve from the GI symptoms but they are back again. Now when I go to the bathroom my bowels feel like I’m passing shards of glass, and yesterday evening I noticed the toilet paper dotted with blood, and both back and front feels raw. I can’t tell whether I have another infection or if it’s something related to my Dysautonomia, or a combination of both. It’s 5:42 in the morning and I just took some pain medication so that I can hopefully get some sleep before the personal assistant comes at 9:30 AM.

 

More Delays on Out-of-town Specialist Appointments

Ain't It The Pits - Photo for WordPress Blog DSC_0023

Nothing about this diagnostic process has gone smoothly, but transportation was the one thing I thought was wrapped up. I’d called Southeastrans (Medicaid’s transportation broker for this area) a month ago to find out what the process was and was told that they’d schedule these out-of-town trips just the same way as they did the in town trips; that I just needed to call their main scheduling number and they’d set it up.

Meanwhile I set about requesting all the necessary medical records (two discs for each of the two doctors). 

The sleep study tapes were elusive and I found out that Radiology nor Medical records has those accessible; that they were handled by another records department connected with Sleep Medicine. After about a full 2 days I finally got routed to the right department, but initially only the latest sleep study (July 2015) was showing up in the computer database. I had 3 sleep studies in all (each of which yield important data that any top level specialist will be able to see the significance of in the diagnosis of multi-system disease). Researchers who are up on the latest medical knowledge understand that sleep studies are often the first sign of such disease processes and they give important markers that may not be fully detectible via other tests for years. Finally after much searching around somebody suddenly located the other 2 tapes and I was told they were being copied onto dics as we spoke. 

I suddenly found that people who answered the phone in the various departments and call centers were greeting me in an uncharacteristically friendly and helpful way, asking if I were “having a good day”, some almost as if they knew who I was, and this time when I called to schedule my follow-up appointment with Dr. V. the appointment went through! Suddenly people were actually returning my calls again and they were not proxys but those whom I had asked to call me back!

It remains to be seen whether or not everything is unblocked now since they received my cease and desist letter. I hope it is and that I will have no further blocks on my scheduling from here on out. I have since received no explanation via Patient Relations nor from Administration directly as to whom initiated the block and the circumstances under which their Chief Medical Officer was called in.

Good old Dr. H. the pulmonologist may have helped me much more than he knows. Even if he (the subjective human) has or had doubts in the short-term about my underlying condition(s), his objective data reveals important tuths that can’t be denied. Within these studies could lie the key to my underlying condition(s) and when viewed by the right specialists who understand patterns and correlations it could be my salvation, and will very likely get my treatment back on track.

Maybe in time he will come to understand that his hunch about a central process in the Pons and/or Medula was correct all along. (Afterall, that was one theory as to why I had the slowness of muscle transmission in my left leg EMG results). Not that anyone would want something to be wrong there, but sometimes a doctor’s admitting he was wrong in his doubts of his first instinct and the patient’s instinct is the best thing for the patient and for the doctor/patient relationship. If the underlying condition(s) can be identified, caught early enough, and treated with the best science has to offer, maybe all’s well that ends well, and all of us can go home satisfied.

I have always and will always maintain that my team of doctors need to keep their eye on the ball and avoid becoming waylayed and distracted by other agendas. The doctor/patient relationship is paramount, and anything that stands in the way of it must be removed. Such distractions are exactly that; distractions, and must be put aside if one is to serve the best interest of the patient. This is an ethical and moral imperative above all else.

There is enough evidence now that something serious is going on in my body, and so I hope from here on out my doctors can dispense with any questions they may have had in their own minds as to that reality, so that we can put our collective effort into finding out what that is.

Well, back to the transportation issue which pulls all this together; I called Southeastrans last week to set up the trips to these two out-of-state specialists and suddenly got the response from the scheduler “We don’t do that.” The scheduler got her supervisor on the phone and she told me that even my Florida trip was too far for Southeastrans to travel; that their broker system only takes people within a 50  mile radius. She did not know of anything else. My heart sank. Knowing that this is a major consideration and that I cannot afford to cover transportation out of pocket with my tiny Disability check amount, I persisted, asking what the process is to get it authorized, as I knew I’d heard from other patients that they were covered for longer-distance trips, especially when their home state did not have the proper testing facilities and specialists and were at an impasse. Surely they couldn’t just leave indigent patients up a creek without a paddle.

The hotel in Cleveland Ohio has been booked, appointments have been made, and records have been ordered on disc, along with many hours of logistical telephone calls, blood, sweat and tears on my part. I have done the majority of the work myself to facilitate these independent evaluations and I was going to be damned if a technicality so idiotic would stand in the way now. I called the Medicaid Commissioner’s office whose aid then put me in touch with another department and there I spoke with a man and a woman who basically told me it was not going to be a problem; that all I had to do was have my doctor fill out a form with a foundation affilliated with Medicaid that would cover airfaire, lodging, and food for my trips, but advised that my doctor start the process right away since time is running short.

I’m supposed to be boarding a plane bound for Cleveland, Ohio on July 6th, come  home Monday afternoon the 11th, and then head out to Gainesville, Florida early the morning of July 13th to arrive there at 9:30 AM for a full day of testing. It required my scheduling the Cleveland Clinic appointment 3 months in advance, and the one in Ganesville, FL, 6 months in advance. All their other doctors were booked a full year in advance, so I was lucky to get an opening in 6 months as it is!

I couldn’t imagine there would be any problem in having Dr. V. fill out the certification form so that this  non-profit organization could ensure these evaluations came to pass, but I was wrong in that assumption.

My detailed message containing the process, foundation’s phone number, and my necessary information sat on the Patient Portal for about 2 days un-forwarded (Dr. V. was unaware of its contents since somebody else needed to forward it to her first). As soon as I realized the doctor had not received it herself I called by phone and was told by a representative in “Brain Health” that she would then mark my message “high priority”.

Soon afterwards I received a reply with a nurse’s name on it as though she were forwarding a message from the doctor asking me to ask my new GP to fill out the form instead (the new GP who does not work for Emory). I could not believe this! There is no time to waste, and besides, why would Dr. V. not fill out the form when she herself wanted me to have these consults? It didn’t make sense. This is one delay that could throw a monkey wrench into the whole thing, and I don’t know how long it takes to process once the doctor does fill it out and submit it through the proper channels. My first date of travel is about a week and a half away (not counting weekends), and nothing is nailed down yet! I wrote back saying I would ask the new Primary Care doctor (Dr. P), but that if she says no and feels it’s the job of my neurologist to do since these are neurological consults, then I will still need Dr. V. to do it. I impressed upon her that time is ticking away and I can’t afford for anything to go wrong. I have not put in all this work and effort just to lose this opportunity.

With no local autonomic clinic close by, and my abnormal movements being not your average garden variety movement disorder, these doctors (if they care about me) should move heaven and earth to see that I make it to both appointments and do everything they can on their end to make it happen. It’s just the right thing to do. 

After I got off the Patient Portal I immediately wrote a letter to my new PCP with the same request I’d sent Dr. V and faxed it to her. I have since found another fax number on some other paperwork from her office and am faxing it to that number as well (to make absolutely sure she receives it).

I hope to God that when I follow up on Monday that I’m told it’s been done and being processed by the foundation that issues the funds and makes the arrangements and that all this will be in time for it to go off without a hitch! It has to! I don’t think I can wait another 3,6, or 12 months to reschedule and arrange this over again.

Last week some nice person in one of my chronic illness groups sent me the link to another woman (this one in Colorado who had received a letter very similar to the one I received from the Chief Medical Officer. This patient is a civil rights attorney.

It seems as though these big healthcare corporations are devising boilerplate FU letters to send patients when they’ve messed up and mismanaged somebody’s care and want to shift responsibility. Such letters are very unwise. The thing is, they will not hold up under federal non-discrimination laws and patients will prevail. Any legal department will clearly see that and advise the corporation to retract such actions.

It’s always a wiser tactic to do the right thing when you realized you’ve F’ed up a patient’s care and do something to correct it and satisfy them from that point forward than to follow one bad decision with another, follow one lie with a bigger lie. In the end no amount of money or image is worth covering up wrongdoing and throwing the patient under the bus. This is the care of human lives we’re dealing with here, not inanimate objects. Earn that image and you’ll have no problems.

There really is something to be said for going that extra mile for the patient rather than doing the least you can do or standing in their way. In healthcare even more than other businesses, true customer satisfaction is very important.

I sincerely hope that Dr. V. will come through when all is said and done and that she will have safe passage to help me maximally, unfettered by competing interests and unbeholden to her employer. As I said earlier; the doctor/patient relationship is paramount. I want to trust that in the end she will put my best interest first no matter what comes. I cannot be let down by one more neurologist.

Cease and Desist Letter Sent To Emory Healthcare

Blue Medical Scales of Justice

I found out that mercifully Dr. V had written the order for the IV Saline and faxed it over to my new primary care physician (outside of Emory), but apparently the new PCP needed her to do a physical examination. We’d had so much piled up from Dr. V’s 3 months away that there wouldn’t have been time for that even if we’d known it were needed, but I had no idea. It wasn’t until a nurse responded to me on the Patient Portal that I knew there was any hold-up.

On Thursday, June 16th I attempted to set up my next follow-up appointment, and was thwarted from doing so because of the block Emory’s Chief Medical Officer had placed on my account. Yesterday (Friday) I tried again after leaving a verbal message of Patient Relations’ voicemail that Emory was violating Federal Civil Rights Non-descrimination laws, and that they need to remove the block on my account immediately. I received no response Thursday, nor Friday, and on Friday when I again attempted to schedule an appointment with Dr. V for sometime in the last two weeks of June or for once I’d have returned home from Cleveland Clinic and UF from the two specialists in mid to late July, I found that the block was still in place. Today I decided to submit a cease and desist letter via Emory Healthcare’s Patient Relations Department on Emory’s website. Here it is below; 

Letter to Patient Relations Sent Saturday, June 18th Via Emory’s Web-form

 I called Patient Relations and got only a voicemail at your phone number (I believe it was on June 16th around noon) at (404) 778-3539. I left a message regarding the fact that Administration, (specifically P. Z. C., MD) has issued a block on my ability to schedule future appointments with any of my doctors at Emory. A licensed physician who does such a thing, superseding and thwarting care by a patients’ own physicians is violating the Hippocratic Oath by maliciously standing in the way and creating barriers to access when the patient is in need of medical care.

 Because of her actions I was denied care for a severe urinary tract infection at Emory Gynecology when I attempted to set up an appointment with my established doctor there. A nurse by the name of M. (at Emory St. Joseph’s Clinic which had the earliest available Gynecology clinic appointment) called me back to inform me I had been “dismissed from the clinic” and rudely talked over me, stating I’d have to go someplace else. When I informed her that refusing care by a non-profit organization is a violation of federal law she yelled into the phone that I’d have to go somewhere else, and then hung up on me.

 I believe this is the same M. that is a nurse of my former primary care physician at Emory St. Joseph’s Clinic, but in Primary Care. The Clinic I was trying to get an appointment with was Gynecology so I do not know why a nurse from Primary Care was calling me.

 Gynecology could not call in the needed antibiotics without seeing me first, so I had to make cold calls to outside physicians on the spur of the moment in order to catch it in time and even then it took all of 14 days to clear it up. I have chronic susceptibility to e-coli infections of the urinary tract. If a mobile physician group had not stepped in to write the prescription for Cipro ASAP I would most likely have had to go to the ER because it was already beginning to affect me systemically. Being an OBGYN herself I am sure Dr. C. is aware of the effect untreated e-coli has on the human body.

 I informed Patient Relations that this is against federal law and that therefore this block must be removed immediately or the corporation risks federal discrimination charges. My call was not returned by the end of business that day nor the next full day (Friday, June 17th). On the 17th I again attempted to schedule my follow-up with my neurologist at the Executive Park location who fully intends to help me and wants to see me on an ongoing basis. She has been away on maternity leave and there was alot that was backed up needing to catch up on when I saw her last on June 3rd and she needs to examine me to start certain services I need. Although I am scheduled to see some out of town sub-specialists I still want and need to keep her as my local neurologist.

 Such decisions should be between me and my doctor and therefore Administration needs to stay the hell out of my confidential relationship with my doctor. I do not know this corporate executive Chief Medical Officer and although she might be a physician she does not have the standing to make medical decisions above the heads of me and the doctors that I choose to enter into a doctor/patient relationship with. This is a malicious and retaliatory act on the part of Administration to prevent me from proving my condition and setting the record straight. Their actions show clear-cut manipulation of my care and an attempt to prevent my obtaining the true diagnosis of my disease-process.

 Retaliation for filing a grievance is an added violation under federal law from which no Emory regulation will provide them immunity. The further they push this agenda the more violations they’ll accrue.

 I don’t know if certain petty individuals consider this their idea of fun or what, but it is a very dangerous game they’re playing, I do not find it amusing and I intend to defend my civil rights to the fullest extent of the law, as a patient with several already established serious autoimmune diseases, I consider their acts of obstruction, patient-dumping, and medical neglect as a corporation a threat upon my life.

 In addition to having the ban lifted, I would like to know exactly who initiated it, why, and how this top executive was brought in.

 This harassment of me has gone on since December when I was abused in the Emergency room and reported it, and it is very clear now that the corporation is attempting to dispense with me as a way to further cover it up.

 Obviously, the corporation is corrupt all the way to the top brass and uses strong-arm tactics to silence those who speak honestly about incidents such as what happened to me (and it is a matter of public record that they’ve resorted to dirty tricks against their own former employees whom have had the courage to stand up and become whistleblowers to report corporate corruption when they saw it at Emory).

 When sending a man to scare and beat me into submission didn’t shut me up, they decided to resort to kicking me out.

 Clearly they underestimate a woman fighting for her life. Given my advocacy background it would be in their best interest for them to cease and desist any further interference with my medical testing and treatment, get out of the way and allow me to pursue my medical care in peace with those doctors with whom I have a good rapport; with those whom genuinely want to help me, whose motives are pure and are in the field of medicine for compassionate reasons.

 I do not bother anybody who doesn’t attack me first, and I am only interested in justice, maintaining my freedom to choose my medical relationships, to obtain my care in a timely, respectful, and compassionate manner, to be allowed to give honest feedback without fear of reprisal, and to be afforded my civil rights to healthcare without interference and impedance, my care plan determined jointly between me and the doctors of my choosing without any sort of conflict-of-interest, pressure or duress from “above”.

 There is absolutely nothing unreasonable about that “expectation” and nothing that justifies my being blocked from scheduling appointments at Emory Healthcare nor anyplace else.

 I am writing you on Saturday, June 18th and I look forward to hearing from you on Monday, June 20th that the block has been lifted and that I can resume scheduling appointments with doctors I wish to continue working with.

Pippit Carlington

***********************************************************************

The letter was submitted at 6: 55 PM, Saturday, June 18th, 2016. I hope this will get through to them that I am serious and that they need to stop these vicious and irresponsible games. What I’ve been subjected to over the past 7 months is institutional bullying and I don’t take that sort of cruelty lying down. If this corporation intends to kill me either actively or passively it will continue to be documented in as close to real time as possible and sooner or later they will be caught and the full weight of the law will come down on them.

Just as Administration is watching this blog, so are others whose job it is to protect patients like me, and I’m sure that I’m not the only patient this type of thing has happened to at Emory. It may be that I’m the first patient to make it public, but a good background search will reveal that Emory has a long and sordid pattern of vicious and underhanded attacks against dissenters, and of discriminatory practices (mostly on the University side), but there have been documented incidents of corruption starting with antisemitism, and others ranging from research study manipulation and NIH funding fraud to Medicare/Medicaid billing fraud some of which included double-dipping; billing Medicare and Medicaid for services which had already been paid for with research funding.

In each of these cases the entity sought to discredit the whistleblower who had exposed the particular malfeasance by exploiting whatever vulnerability in that individual they could, be it their work reputation, going after their medical license with lies about them, assassinating the person’s character, and/or painting them as mentally ill.

Dr.Charles Nemeroff, a psychopharmacologist and former head of Emory’s Dept. of Psychiatry who is mentioned in numerous reliable media source’s articles and investigative reports as having committed research and medical journal publishing fraud and that he was in bed with major pharmaceutical companies and getting promotional funding from them while employed by (and with the blessing of) Emory. He also falsified safety claims on Abilify stating it was safe when in fact it was causing Tardive Dyskinesia.

Nemeroff himself conducted some of those psychiatric evaluations on whistleblowers, (proving my point that Emory does have unofficial hatchet-men to do their dirty work for them in order to cover up their corrupt practices).

After leaving Emory and Georgia in disgrace, Dr. Nemeroff went on to become employed at University of Miami and officials there seemed strangely unconcerned about hiring somebody who had committed illegal and unethical acts in the process of his career activities.

Apparently the reason for this nonchalance according to the Chronical for Higher Learning was that NIMH Director Thomas Insel owed Nemeroff for a favor he’d done for him when he’d lost his position and put in a word for him with Pascal Goldschmidt, MD, UM’s Medical School Dean, convincing him that the benefits in the man’s skill at fundraising outweighed the risk he carried. Meanwhile Insel quietly revised the NIMH conflict-of-interest regulations, and Nemeroff sits on two advisory boards that decide or influence which scientists get research funding.

Nemeroff’s current department is back in the Medicaid business overseeing a multi-million dollar contract which oversees 900 providers 30 hospitals, and 100 CMHCs (Community Mental Health Centers) trusting him with state funding again even after his HHS/CMS violations here in Georgia. While Nemeroff sits on easy street the whistleblower has spent years of his life fending off numerous frivolous legal challenges thrown at him by a judge who was in Emory’s pocket, unfairly placing a gag order on him while not evenly applying the same constraints on Emory whose various officials have given a number of media interviews about theirs and Nemeroff’s side of the story.

Emory holds a tremendous amount of power in Atlanta and throughout the state of Georgia so it’s no wonder that its top-level executives feel they’re above the law. It’s bad enough that they feel free to tamper with research and NIH/NIMH funding and go after people to cover up the skeletons in their closet, but the epitome of low-down and dirty that they’d resort to such tactics against patients! To attack a patient may prove to be their undoing. That is a bridge too far. Here’s one porcupine they’d best leave alone. I’m sure this is just the tip of the iceberg.

 

Emory Patient Banned for Giving Negative Feedback

“Please accept this letter as a formal notification to you that all the physicians at Emory Clinic are formally withdrawing from your care. We wish to terminate the physician/patient relationship that has been established because we are unable to meet your expectations.”

Emory Chief Medical Officer - Letter Banning Me Dated April 19th 2016

As I awaited Dr. V’s return from maternity leave it seemed like an eternity. The Dysautonomia continued to spiral out of control and still no treatment for it seemed forthcoming. My digestive tract took turns with my blood pressure and heart rate wreaking havoc on my body. The weight-loss continued, and my hair began falling out. I found it in my bedsheets, on my clothes, on the floor, in the bathtub and it even fell into my food during those periods when I could eat. The Patient Portal had grown eerily silent, and though I occasionally left symptom updates for Dr. V’s Nurse Practitioner it seemed almost as though the conversation had gone cold and for a time I wondered whether anyone was reading (except for Administration whose new pastime seemed to be keeping tabs on me). It became evident that nobody was going to fill in for Dr. V to write orders in her absence and to this day I don’t know why, nor could I get a straight answer to this question when I directly asked staff. I figured why waste all this time for the 3 months she was away when we could be actively working on the problem.

The Nurse Practitioner eventually told me she was forwarding my correspondence to Dr. V at home and that was some consolation. It turned out Dr. V was in agreement with my getting back on IV saline given the fact that there was not a whole lot else to be done about it other than to load me up on beta blockers which neither she nor I wanted. Even so, she held off on writing the order herself while she was home and nobody else wrote it either.

The Gastroenterologist, Dr. J.M. was reluctant to venture into that territory, viewing it as the job of Neurology, and though she was cordial enough she seemed to be very traditional and more in favor of treating the GI symptoms individually with a pill for each one. She did do a couple tests though, so it was a start. Other than the waxing and waning of my symptoms punctuated by several acute crises of near syncope, nausea, headache, and vomiting, everything else for awhile anyway was uneventful and I was grateful for that.

I thought maybe finally Administration had turned their attention to other matters,  but no such luck. Just when I thought it might be safe to go on with my life and my medical care and that maybe things would eventually iron themselves out I received a certified letter, then soon after, another copy of the same one in my mailbox with the dreaded logo on the left-hand corner in that severe, bold font in dark denim blue. I wondered what fresh hell they were cooking up this time and all the while hoped it was good news, but when I opened it, the audacity hit me full in the face like a mean left hook. It was an official letter from Emory’s Chief Medical Officer (not the male I’d been told held that position several months ago but this time, a woman whose name was unfamiliar). This was not long after I’d received the report from Patient Relations merely parroting Dr. B’s response and that of his direct supervisor who had not returned my call as she’d promised during the time before Dr. B officially bowed out. I’d called to follow up with Patient Relations and got their voicemail so I’d left a message telling them I was still sick and asked what exactly Emory was planning to do about that. For weeks I’d received no response. Although  irritating I wasn’t surprised considering how useless their “investigations” had been before. It now seemed clear that the letter was meant to act as a response, but instead of offering some sort of olive branch, concession, or compromise to come to some positive resolution the content of the letter pushed further in the opposite direction upping the ante from the once rather off-hand suggestion that I could always choose to go someplace else if I was dissatisfied to now directly telling me I was being kicked out by the Royal WE which was the entirety of Emory Healthcare. This is something that they don’t legally have the right to do because they’re considered a non-profit organization and the conditions under which they receive federal funding dictate that they cannot discriminate nor refuse treatment to patients who come to them asking for an appointment.  The doctors employed by Emory although technically employees are individuals, and some are better than others.

I have never maintained that every single one of them is crappy and I made that very clear to Patient Relations. I give credit where credit is due and I don’t blame those doctors who are genuinely trying to help for the shenanigans perpetrated by certain other individuals who choose to continue to exercise poor judgment or engage in malicious acts against me.

Despite the vicious nature of the corporate entity there are some good and caring doctors there and it is unfair for some corporate mouthpiece to be so presumptuous as to say she speaks for them. I’m sure that there are many doctors whom would blanch if they only knew how unethical those in the ivory tower behaved, and some might even decide they didn’t want to work for such an evil empire that so callously dismisses patients still needing care.

Hypocritically, Emory spends probably millions (possibly even billions of dollars) on patient satisfaction surveys, yet when a patient gives honest feedback that is negative about an experience there they are personally attacked. This information should be used to improve the system, not used against the patient, and nearly all federal civil rights laws have a requirement that the claimant not be retaliated against for filing a grievance, yet this is exactly what has been done to me.

If I were one of the decision-makers at Emory I would take that money currently spent on surveys that are used just to pump up their false image and all the new buildings being erected around town and put it towards hiring more doctors. More buildings will not make Emory better, that depends on the people in charge and it is incumbent upon them to earn the reputation they so badly want. More buildings cost money and it is highly likely that the care each patient receives will suffer and more rationing will result.

Not long after I had my colonoscopy I developed a horrible urinary tract infection and needed to call the Gynecology clinic to make an appointment since it had been awhile since the doctor there T.M. had seen me in the office, so although it was obviously e-coli she could not just call in a prescription before seeing me to culture it and make sure she was giving the right antibiotic. As it turned out, she had no openings for about 2 weeks and this thing was growing like a weed by the day, so it needed to be taken care of within the next day or two or I was going to end up back in the emergency room. That was how serious an infection I had! The weekend was quickly approaching and I wasn’t looking forward to being stuck with it until the following Monday. The call center informed me that they did have an opening at Emory St. Joseph’s location, but when the representative attempted to schedule me she kept on running into a wall.  

“This thing won’t let me advance to the next screen,” she said. “I’m getting a full stop!” I asked if the system were down and she said no, but she wasn’t sure why it wasn’t working now but thought it was a temporary malfunction. I told her in the meantime to have a nurse call me.

Not long afterwards I received a phone call from a nurse, M. whom it didn’t dawn on me until halfway through the conversation was Dr. B’s nurse. I wondered why his nurse in Primary Care would be calling when I had been trying to get an appointment with Gynecology, not her clinic. She told me “You’ve been dismissed from the clinic.” I calmly told her that they could not legally deny me treatment, that it was against Federal law, to which she got very nasty. This was odd that she would seem to have a dog in the fight, but then it suddenly occurred to me that most likely it had been she who had initiated the ban in the first place as revenge for my clearing the air with Dr. B. on the Patient Portal. Obviously there was gossip taking place behind the scenes (more unprofessional behavior than I’d known). Dr. B. was a big boy and it was petty that this woman was fighting his battles for him. She raised her voice, talking over me rudely, telling me I’d have to go somewhere else.  

“Where exactly do you suggest I go on a Thursday afternoon?” I asked.

I don’t know, you’ll just have to go somewhere else.”

” That is illegal” I reiterated. “Emory Clinics get federal funding so you have to accept patients who wish to make an appointment. You cannot discriminate or cherry-pick. I’m an established patient with this doctor and have been for several years”.

“Go someplace else!” She yelled into the phone and hung up. I called the call center immediately and reported what had just happened. A young woman in the call center apologized and said that I shouldn’t have been treated that way and gave me the name of a man who was the supervisor there and said she’d leave a message for him to call me, but he never did.

By the skin of my teeth I was able to get help from a mobile primary care service. Initially they were going to try to get home healthcare out here to get a urine sample to culture but that fell through and we found out that they didn’t do that kind of thing, so a Nurse Practitioner from the mobile service took mercy on me as she too was concerned about my having to wait through the weekend because of the severity of the infection. She called in a prescription for 14 days of Cipro. It turned out I needed all 14 days because the infection was pretty entrenched! Clearly my immune system is compromised, as it seemed to have sprung up overnight and became full-blown faster than normal and was affecting me systemically by the time Friday rolled around. Once I got the antibiotic it took awhile before I noticed feeling any better although slowly but surely the infection started to abate.

I looked up information on this Chief Medical Officer and discovered ironically that she’s an OBGYN herself! Surely she knows what untreated e-coli infection does to the human body, especially to someone chronically ill who is immune compromised. She should be ashamed of herself! What doctor with any sense of ethics does that! She needs to remove the block from my account immediately!

Then a few weeks later I began feeling severely faint and nauseated and ended up in the ER again. The ER doctor at St. Joseph’s wanted me to follow up with my Cardiologist in just a few days but he had no openings until July, so I searched out a Primary Care doctor and luckily was able to get an appointment sooner. She seems very nice and was open to my starting back on IV Saline infusion and was willing to order it but wanted my neurologist to fax her something saying she was OK with it first. She also thought I should see an endocrinologist as she said that there are certain endocrine problems that can cause Dysautonomia.

Dr. V. returned to work and I saw her on June 3rd. We had a long conversation and I told her everything that has happened and she was very understanding. I detected none of the pushiness I’d seen in the first appointment. I thought maybe she was feeling under pressure knowing she’d be giving birth any time, so maybe what I saw the first time wasn’t her usual personality. During this second appointment she seemed very warm and caring and I could tell she really felt for what I’ve been going through and wanted to set the record straight. She is in total support of my having these out of town evaluations and said that Emory is woefully lacking in the right equipment to do this type of autonomic testing. She told me she wanted to know how the two upcoming appointments with the specialists go. Then she ordered a number of blood tests related to various endocrine things to give the endocrinologist a head-start and one or two tests that could be done at their lab on mold. I left there feeling a sense of renewed hope, but then I got home and found that I couldn’t set up the next follow-up appointment with her. I finally have a neurologist who is invested in me and I want to continue seeing her, and make no mistake about it I intend to fight to do so.

 

 

Mold; The Silent Killer Your Doctors Might Not Consider

Mold blog article - top of shower DSC_0002

If you come into the doctor’s office with a runny nose, sneezing, coughing, or wheezing they’ll usually think it’s allergies, the common cold, or even asthma, but mold??? Chances are that has never crossed your doctor’s mind as the possible cause of your symptoms, mostly because doctors aren’t taught much about it in medical school and they assume it’s pretty rare. After running a few tests without a clear cut explanation they may send you home with a prescription for some allergy medication, run a couple more tests and when those don’t get an answer you might be told to consult a psychiatrist…but not so fast, doctor. The source of the problem could be (no pun intended) right under your nose!

With more and more buildings aging the problem of water damage and the mold that grows in it is alot more common than you might think and certain genetically predisposed (HLA–DR) individuals are not equipped to fight off the effects. Human Leukocyte Antigen (HLA) is a grouping of genes on chromosome 6.

The resultant illness is multi-systemic and falls into a sub-category of Biotoxic illness called Chronic Inflammatory Response Syndrome (or CIRS). The invading biotoxin signals the body to produce a continuous stream of cytokines creating a chronic autoimmune inflammatory condition. Patients with this genetic predisposition are unable to clear these substances on their own and therefore treatment is necessary.

Blood tests that may reveal that you have a mold-related illness;

VIP – Vasoactive Intestinal Polypeptide –                    Normal Range23-63 pg/mL

C4a Level                                                                                   Normal Range0-2830 ng/ml

TGF Beta-1 Transforming Growth Factor Beta-1               Normal Range:  <2380 pg/ml

MSH-Melanocyte Stimulating Hormone                      Normal Range 35-81 pg/ml      

HLA DRB, DQB Typing

CD57

MMP-9 (Matrix metalloprot.-9)

MSH                                                                                           Normal Range35-81 pg/mL                                          

AGA IgA/IgG                                                                                 Normal Range 0-19

ACTH/Cortisol                                                                         Normal Range:  ACTH – 8-37 pg/mL; Cortisol – a.m. 4.3-22.4 / p.m. 3.1-16.7 ug/dL

VEGF                                                                                             Normal Range:  31-86 pg/mL

ACLA IgA/IgG/IgM                                                                       Normal Range:  IgA – 0-12; IgG 0-10; IgM 0-9

ADH/Osmolality                                                                               Normal Range: ADH – 1.0-13.3 pg/ml; Osmolality – 280-300 mosmol

MMP-9                                                                                     Normal Range85-332 ng/mL

Leptin                                                                                       Normal  Range:  Male: 0.5-13.8 ng/mL; Female: 1.1-27.5 ng/mL

Urine Mycotoxin Testing; tests for 3 mycotoxins; Tricothecenes, Aflatoxin, and Ochratoxin

Visual Contrast Sensitivity Test                                                    

This test evaluates your brain’s ability to recognize contrast. You are shown a variety of patterns and objects with one eye covered and then the other viewed at a distance of 18 inches away. Although not diagnostic for mycotoxin specifically it does supply your physician with supporting evidence (get this test free) here or for a donation obtain added benefits. It is recommended that the results be confirmed with a physician repeating it in the office in-person.

 (most or all of these are available through your doctor’s office and their lab, and some or all may even be covered on Medicare/Medicaid).

Dr. Ritchie Shoemaker a revolutionary in the innovative treatment of Lyme Disease also is well known as a physician who treats mold and has written extensively on Biotoxin illnesses. Read more in depth about his theory on Biotoxin Pathways here.

In addition to the more typical upper respiratory symptoms patients affected by mold can also experience others that may not immediately appear to be mold-related.

Symptoms

muscle pain, cramps, burning, unusual shooting (ice pick-like) pains

headaches

fatigue, weakness, flu-like symptoms, fever, chills

shortness of breath, cough

abdominal pain, diarrhea

chronic sinusitis, sore throat

burning eyes, red eyes, sensitivity to light

difficulty with thought processes, memory loss, loss of concentration, confusion, disorientation, “brain fog”

dizziness, balance problems

metallic taste in mouth

numbness and tingling

night sweats

temperature regulation problems

excessive thirst and urination

rash

excessive menstrual bleeding

mylar flush (face flushing)

chest pains

IgA nephropathy (kidney disease)

Increased infections

The sensation that you are going to pass out

Panic attacks

Tremors

Attention deficit disorder

Vision problems

Swollen lymph nodes

Anxiety, depression

Difficulty losing weight (in detoxifier types)

Ringing in the ears

Hearing loss

Chronic fatigue

Multiple chemical sensitivity (stachybotrys and chaetomium)

Nose bleeds and pulmonary hemorrhaging (stachybotrys)

Bruising, hives

Infertility, miscarriage

Fibromyalgia

Chronic fatigue

Multiple sclerosis like symptoms

Dirt like taste in mouth

Cancer

Hair loss

Joint pains

Irregular heart beat

Heart attack

Seizure

Muscle twitching

Anaphylaxis on re-exposure to toxic molds

Air hunger, can’t get a deep breath

Child developmental delays

Apathy

Difficulty handling any kind of stress

Mood swings, irritability

Frequent upper respiratory infections

Sensitivity to sound

Nausea, vomiting

New food allergies

Jaundice (yellowing of the skin or eyes)

Poor insight into illness

Stomach ulcers

Death, in extreme cases

I’m thinking there is a possibility that inhaling mold spores in my environment could be causing or at least contributing to my chronic illness and so I’m asking my doctors to run any tests they can to rule it in or out. Given the range of symptoms that can come from mold exposure it is not unreasonable that this may be the culprit (or at least part of it) and it would explain why doctors have been unable to identify the cause as of yet. In order for tests to come up positive one has to have some idea of the right tests to order in the first place.

In addition I’m looking into getting my home tested. If mold is found in my house then chances are high that it’s in my body as well, especially if it’s black mold, or Stachybotrys.

 Testing Your Home

There are a number of products on the market to test your home for toxic mold.Dr. Mary Ray D.O., a primary care physician who practices in Jacksonville, Florida, and mold survivor herself has created an educational website to let the public know about this problem and things you can do about it. It is an invaluable resource for anyone who is chronically ill to read and consider, as every little bit helps when your health is compromised and your immune system, vulnerable.

One piece of equipment Dr. Ray suggests is a moisture meter since mold thrives in a damp environment. The one linked above is the model she recommends which gives you the most bang for your buck.

In addition to a moisture meter a Borescope (a tube with a small camera in it) can help identify what may be hiding inside your walls that you can’t see with the naked eye. To use one of these you cut or drill a small hole in the wall you want to see behind and snake the tubing through it. This device connects to your computer via a USB cable and allows you to take video or still shots of the inside of your wall where mold often grows.

If you don’t see it on the outside of your walls it doesn’t mean it doesn’t exist. Sometimes the areas you can’t see are the source of your problem and having a tool like this can allow you to identify areas where you have mold that otherwise would go undetected. This can also be used to look inside your ear, nose, and throat, to see possible problems in the body. See a more in-depth description here .

Other testing methods such as the IAQ 5 Minute Mold Test, Instant Mold Test, Examineair Mold Test, the ERMI DNA Mold Testing, Predict Voc (Micotoxin) Test are outlined here.  

An array of dehumidifiers, air exchanges, and air purifiers are available to reduce the number of mold spores you’re exposed to. This is especially helpful when you can’t afford to fully rid your home or workplace of the substance and when you can’t feasibly move. I own my home and it’s paid off, so moving isn’t an option for me since I save money by not needing to pay rent or house payment.

Living on Disability income of less than $800/Month I do not have the money to pay out of pocket for my house to be remedied but have been searching for a non-profit or someone who would be willing to donate their services to do the work to remove the mold and prevent its regrowth. It has been like finding a needle in a haystack. Many of the agencies just have a voicemail and don’t call back when you leave a message. I contacted one ministry with a voicemail that says due to the huge need for handyman services it may take several weeks for them to return your call and if you don’t hear anything after that to call them back. Needless to say, that doesn’t inspire alot of confidence.

I’ve noticed more often lately my nose starts pouring mucus, and at times sneezing and stuff flies out. It’s gross and I can actually feel the increase in histamine!

The EPA and CDC tell me that many of the services available to the elderly and disabled won’t do mold removal because of “liability”. I’m not sure why they’ll take the “liability” for a huge fee from the client but not on grant money from the government. Seems to me it shouldn’t matter who pays them. The job is the same either way. They just need to wear protective gear to avoid inhaling the stuff while they’re removing and replacing materials in the home.

If anyone is reading this who has a business of this type or can arrange to provide such help please leave a comment below and some contact information. I am located in Stone Mountain, GA. just outside the Atlanta area. Your help is much appreciated.

Dr. Ray has an online consulting service as well as a Facebook group for people who have mold-related illnesses or think they might have one. She does sell supplements (something I’ve never been a big fan of) but you should evaluate for yourself whether you think those will be of help in your individual situation.

She offers a free newsletter, so I don’t think she is in it for the money although I know that many of the expenses for conditions like these are not covered by health insurance so I’m sure that she and others need to do something to raise money in order to get all that they need to treat their home and their bodies.

Dr. Ray’s website covers numerous possible treatments for the body as well as for your home. A list of mold-knowledgeable doctors is available here

Treating Your Home for Mold

Before starting to clean, turn off furnace and air conditioner and cover vents to prevent blowing spores around in your home. If the problem is severe enough that you can smell mold in your house wear N-95 or P-100 respirators.

Dirt and mildew can look the same way, so test areas with bleach to see which it is in any blackened areas. If you put a little bleach on it and it lightens after a minute or two then it is mildew. If not then it is most likely dirt.

Wood can be tested with a sharp implement like a screwdriver to see if mold or mildew has infiltrated the surface. It it’s soft upon doing this or crumbles that indicates that the surface has been begun to rot and that the mold has gone deeper into the wood.

For areas you can access such as wall corners, baseboards, and bathroom fixtures use 1/2 Cup Bleach/1 Qt. water (or a 1-8 water and bleach solution).

For the areas between bathroom tiles apply a grout sealer to prevent mold from infiltrating the surface again. (Never use any ammonia-based cleaner with your bleach, as this mixture emits toxic gases).

Mildewcide is contained in most paints nowadays used in bathrooms, but is also available as a separate substance that can be applied in bathrooms.

Walls that are infested with mold need to be cut open to air out and spray solution such as white vinegar on wood if wood is not too badly infiltrated. (Note that bleach will not kill mold beneath the surface of porous surfaces). In some cases, especially when there is rotten wood, these areas of wood and/or drywall might need to be cut out and replaced with pressure-treated wood.

Hard to remove wood can be sprayed and then after dry treated with wood preservative. When carpet is affected, remove this with utility knife in 6-8 foot sections and spray the floor beneath with the above bleach solution to neutralize the mold spores (while running a fan in the window or out the door and wearing protective clothing).

Dehumidifiers and fans should run for 3 days after clean-up has been completed. Bare earth floor in crawlspaces can hold in moisture and promote mold growth in the floors above, so cover the ground with 6-mil poly sheeting. This website gives you instructions for a variety of other cleaners you can use to eradicate mold from your building such as borax, vinegar, even tea tree oil.

If your problem is more severe and mold is hiding in hard to access areas you may have to call a professional which can run anywhere from about $500 – $6,000 depending on how widespread it is and where the mold is located. Your homeowner’s insurance may or may not cover this, and there may be add-on coverage to your existing policy.

If you’re renting then it’s important to look into what your rights are in the state in which you live. In some instances if your building management won’t adequately clean up your residence you may have grounds to get out of your lease early without paying a fee and in some cases they may be liable for damage to your items or to your health if they’ve failed to take the proper maintenance steps to prevent and/or keep this problem from recurring.

Prevention

Preventing the re-growth of mold is important and one of the main ways to do this is to seal off any sources of moisture in the home or workplace, as these are what allows the mold to grow and reproduce.

The most likely culprit in my home is where the fireplace lets in water when it rains. It leaks in through the chimney and spills over onto my carpet when it’s raining hard. Although this dries pretty quickly if it only rains for one day there have been times of the year when it rains for a week straight and this can stay damp for awhile in those instances.

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I recently saw a new primary care doctor who said she thinks my Adrenal gland may be malfunctioning. She may be onto something with that hypothesis, as it seems that mold can affect endocrine function including the Adrenal gland. She is referring me to an endocrinologist for more involved bloodwork. So far I really like this doctor. She is young and still seems excited about coming to work each day and she thinks outside the box!

I spoke with her about getting IV saline for the Dysautonomia and she is willing to order it as soon as my neurologist faxes her something saying she’s OK with it. With all the health crises I’ve had recently it will be a huge relief to finally get this in the works, and while this may only be part of the solution, I think it’s an important part because the proof that it helps was very evident when I was hospitalized at Piedmont.

Interestingly she said that the fact that saline helped indicated that there might in fact me an endocrine problem that includes dehydration. At the time I had not yet read about mold and it’s symptoms in the body but later it made sense that excessive thirst and dehydration are two of the symptoms of mold toxicity.

I’m really glad I trusted my gut and didn’t believe those people who tried to get me to think I was crazy. I might have wasted lots of precious time having my head examined as I continued to get worse. I’d made that mistake years ago when I was having more pain on my left side at a time in history when it was in vogue to think every physical symptom was caused by “stress” or “conversion” and the therapist and a psychiatrist both had good instincts and told me they thought I had something physical wrong that needed to be worked up. Lo and behold, soon after things started finally showing up on bloodwork. If Dr. H who said “It can come back”, (meaning conversion disorder) is reading this, well I never had “it” to begin with and I’m sure I don’t now. Shame on him and on Dr. B for thinking that way!

Reverting to that mind-set with a patient is really taking a cheap shot and considering the newer symptoms have only just appeared and worsened in the past year, giving up and throwing in the towel in that short a time is rather wimpy if you ask me, considering that many chronic illnesses are life-long.

What are you going to do, doctors, just keep shuffling your patients like cards until you get the hand you want? Life doesn’t work that way. It seems ironic that one would go into a job that involves treating disease and expect all their patients to instantly recover.

It would be nice if all illnesses were short-term like a cold or the flu, but that’s not reality, and with today’s environmental issues increasing due to climate change, pollutants, mold, and an increased bacterial load as people age along with GMO and “enriched” food supply, chances are you guys are going to see a larger and larger proportion of your practice taken up by people who are or will become chronically ill, so you’d best prepare yourselves emotionally for that eventuality or start planning your exit strategy now and retirement or re-training to enter a completely new field because this is just the way it is.

Despite our best efforts we patients will get sick and sometimes from things we can’t bounce back from. Getting angry will not fix it, nor will shifting the responsibility onto another doctor. It’s not just me. It’s everywhere.

This past weekend I went through a storm of symptoms including stuffy nose and mucus pouring from my nose like water on top of the near fainting spells, severe nausea and GI upset, increased muscle pain, myoclonus, and headache (which earlier in the week landed me back in an ER it was so violent). It really wasn’t until sleeping and taking pain medication and Ibuprofen for inflammation all weekend every 6 hours like clock-work that the cycle seemed to break and I could eat something and feel up to doing anything.

There is clearly some systemic underlying inflammatory process going on. It will just require doctors with some patience and interest to find out exactly what it is. The answer is not to get rid of the patient nor write them off as nuts and to stop trying, but instead to try a new angle, and if a doctor is so burnt out he can’t manage to do that then maybe it’s he who needs to leave and go do something else. The field of medicine requires patience and a level of commitment to the patient even when the answer is not evident on the surface.

These are huge problems in need of compassion and persistence. They are not a failing on the patient’s part, they are here to stay, and managing them is a delicate balancing act.

It seems the best way for a doctor to approach them is to first acknowledge that we live in an era in which genetics has met up with epigenetics and understand and accept that there are no quick solutions. Sometimes you just have to try some things to see what works, not be immobilized for lack of a diagnosis, and reconcile to working within that reality. That is where art meets science.

 

Getting In-Home Help; Advice for the Homebound Patient

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Being chronically ill there are times we need help with certain aspects of everyday life. If you’re lucky enough to have a good support system of people living with you and/or coming to your home to help with things like grocery shopping, cooking, bathing, house cleaning, running to the pharmacy then this might not pose a difficulty for you (other than the initial embarrassment of having to ask for the help you need, or worrying about whether the people in your life will feel imposed upon).

If you have nobody to help with such activities because either nobody you know commits to help out or those people in your life are limited because of work obligations during a large part of the week, you may need to look into hiring a professional service.

At the outset this can seem a monumental task especially when you’re fatigued or brain-fogged, but it is often essential.

To many homebound/bed-ridden people this can make the difference between having quality of life or not, and sometimes it can even be a matter of survival if for instance you run out of food and are unable to go to the store yourself and get what you need to eat, or you run out of medication or need a new medication urgently for an acute medical problem and have no way to get it yourself.

The idea of having a total stranger coming into your home to help with activities of daily living can be a little unnerving but there are steps you can take to make it less scary and more safe. There are a whole array of agencies and individuals who provide home-based care and their fees vary depending upon the level of skill they have, their education and licensing, and often the length of time they have experience in the field.

One can find relatively basic care-givers who have informal experience taking care of a loved-one, all the way up to people who are licensed to provide skilled nursing duties, and everything in-between. The majority of this work, though, is performed by CNAs (Certified Nursing Assistants).

You will want to ask agencies whether they’ve done background checks on those they employ and what those checks consist of, whether they do a drug-screen, check references, etc. If you are able you might also want to do your own once you have picked out or are assigned a specific care-giver. You might even want to place a “nanny-cam” in your home as a safety measure. While in-home abuse or neglect by professional assistants is relatively rare statistically (especially when you obtain someone from an agency), it does happen, so although you might never run into such an incident, having daily activities on videotape is a good idea if you have the means to do so. This also verifies that activities performed in other parts of the house not in your presence are being completed, as agreed.

Once you meet the person you should also ask them what kind of experience they’ve had with your type of illness, assess how much they know about it, how willing they are to learn about it, and tell them your needs. You will get a sense of how they are from their response. If they sound confident and receptive to what you need them to do then they are likely a good fit.

If on the other-hand they are resistant to providing this or that, or they sound oppositional, ill-equipped either experience-wise or emotionally this is a red flag and you should ask for somebody else. Even on Medicaid you have the right to request a different assistant if you do not feel comfortable with the one assigned. If you are paying privately you will have the opportunity to interview a variety of people at the outset and choose one.

You can find personal assistants on sites such as Care.com and Angie’s list, as well as through senior and disabilities organizations, the United Way helpline, and on the internet.

These agencies and individuals generally fall into two categories; private pay, and Medicaid. (Generally Medicare does not cover these services and neither does private health insurance). Occasionally a long-term care insurance policy might cover this type of help but not all of these services accept it as payment, so you might have to do alot more calling around to find one that does.

If you’re on Medicaid (either as your primary or secondary insurance) and you are having significant problems doing things such as cooking and cleaning, bathing, or getting out of the house to buy things you need you will likely qualify for one of Medicaid’s Waiver programs.

Medicaid is state-funded, so the programs in your area will vary based on what your individual state offers, but most states have some help of this type available. Generally you would call your local Medicaid office to find out what the process is and they will send you forms to fill out about your needs.

If you live in a country other than the US it is likely your country offers something similar. I know that the UK has a very good government funded system of professional care-givers (which makes ours pale in comparison and is generally free), and Australia has one as well.

Each Medicaid Waiver category has slightly different criteria and there may be several offered, so you may want to ask them to send you a booklet on all the ones in your area to decide which one best fits your needs and situation. There are usually waivers for adults and ones for children. Since there are a large number of applicants needing help and funding in this day and age is limited there is likely to be a waiting list even after you’re approved, so it is best to apply as early as possible so you’ll be less likely to end up in a bind.

Still sometimes applying promptly doesn’t guarantee that services will come through in time and when that happens getting the help you need may be costly or downright inaccessible.

I recently ran into a situation in which I had to have a colonoscopy and Emory was going to cancel it if I didn’t have somebody with me. I’d already drunk the prep and gone through considerable upheaval by the time they told me my having nobody to come with me couldn’t be accommodated, so I had to pay about 1/4 of my monthly Disability check to hire someone for the day. Had it fallen in the middle or end of the month I literally wouldn’t have had the money to do it, and even now I cannot pay other bills because I’m out the money that ordinarily would have been used to pay  my  monthly living expenses.

I called the same agency I’d applied for the Medicaid waiver through (ironically just a week or two later Medicaid approved me for the program). They emailed me a contract to sign and added a credit/debit card on file for them to charge once services were rendered. My experience overall was good and it gave me a chance to test-drive the service and get a feel for what it was like.

A woman arrived at my house on time the day of my procedure. She was personable and I filled her in on the situation and we talked while we waited for transportation to show up. She loved dogs which is a plus, since not all of them do, and went to speak with Carmella who was whimpering in the kitchen wanting some attention. She told me she had done this type of work for many years and told me about some of the clients she’d worked for.

Things went smoothly. The only thing I would change is I could have used somebody a little more assertive, as there were a few times when people at the outpatient center were not listening to me and taking my special needs into account where I needed her to step in and back me up. She was rather flabbergasted at these incidents though and noticed that some people were not respecting my dignity and were treating me like a number. She noticed, for instance, that after her colonoscopy they had her in recovery for about 5 hours while they rushed me out after only about 15 minutes and that they tried to unhook the IV before all the fluids had finished.

On Friday a woman from the agency came out to my house to complete a nursing assessment once they’d determined that I’m eligible through Medicaid. She asked me what my needs were and my limitations. (I believe the nurse comes out once every 90 days).

I was approved for an assistant 6 hours per day/5 days a week (which isn’t bad for the type of waiver I applied for). This is a huge relief, as so much has had to go by the wayside because I just can’t do all these things myself anymore. Just going to a doctor’s appointment and being out of bed that long is extremely taxing for me, and vacuuming the floor is now pretty much impossible. I have no way (nor the physical strength or stamina) to lug a load of groceries on my wheelchair from the grocery store, so having somebody who has their own car is crucial. Next month I am going to need to replenish alot of food and supplies, as things have run out and I’ve been unable to go to the store myself. Now that my stomach is so unpredictable I will need to have a large, ready supply of things like chicken broth and the weight of just 4 of those boxes of broth weighs quite a bit. Carmella’s dog food is more than I can lift these days too.

Apparently Medicaid doesn’t pay for mileage for an assistant to drive their own car to go to the store, pharmacy, etc, so that is charged .70 per mile private pay. I may need this once to about 4 times per month and the distance to most of the stores and pharmacy isn’t far, so I don’t think that will be too much of a problem.

I made a list of things that I need for the assistant to do. Most agencies will give you a ring binder with timesheets and other information in it. You should add your list to it so that whatever caregiver you get can easily refer back to it. Explain to them verbally (and if possible in writing as well) how and when things need to be done, whether you’re on any special diet, whether you have any food allergies, food brand preferences, what you generally eat for meals, and any other special needs you have that they should be aware of.

Make sure to ask the agency what their back-up plan is in case the assigned care-giver is out sick or has a family emergency and how quickly they can get a replacement.

With concise organization and clear communication your assistant will make your life easier and less stressful so that you can focus on things other than logistics. This is invaluable and can save you alot of frustration and prevent you from over-extending and over-tiring.

(I’m now participating in the Chronic Friday Link-Up with BeingFibroMom).

 

 

Medicare Home Infusion Site of Care Act of 2015; S275 HR 605 – Your Support is Crucial

As we speak new legislation is being proposed which would help many people obtain IV Saline infusions at home; the Medicare Home Infusion Site Care Act of 2015 .

Bettemarie Bond, a patient with Dysautonomia including a malfunctioning GI tract, and Mitochondrial Disease, once able to obtain these helpful infusions, suddenly found herself unemployed and on Disability and at the mercy of the Medicare system for all her medical needs. No longer covered by her previous employer’s private insurance, the stark reality hit her full in the face as she realized that she was unable to obtain them.  

Her self-advocacy led to the launching of a grass roots effort in her hometown in Philadelphia to get Medicare to cover home infusions. Little did anybody know that her online petition would gain such traction on a Federal level and interest some key legislators!

Kendall Van Pool, Vice President of Legislative Affairs for the National Home Infusion Association,  wrote an article here which goes into more detail about this ground-breaking piece of legislation and a few other related bills.

The original bill, HR 2581 contained verbiage which would not have allowed infusion at home, as it would contain a change in method of reimbursement referred to as Average Sales Pricing (otherwise known as ASP). This is a reimbursement method that applies to physician reimbursement (and in particular applies to delivery in an “outpatient hospital” department). Falling short of true access by patients who are often homebound, several legislators were concerned that such legislation as the first version was too restrictive in not allowing patients the choice to be treated at home with this modality.

Next came HR 6, the 21st Century Cures Act. Chairman Fred Upton (R-MI) of the House Energy and Commerce Committee is hopeful that this version passes in the Senate.

To contact Kendall Van Poole you can call;

(703) 838-2664 or e-mail him at Kendall.VanPool@NHIA.org  

An election year; 2016 could be just the right time for Congress, and thus Medicare, to fully embrace this option if enough patients, families, and healthcare professionals come out in strong support of this exciting new legislation to give patients more choice and flexibility in their treatment and in what setting it’s delivered.

Those of you who follow this blog regularly know that this is something that has helped me when I was hospitalized in November and that my struggle continues to obtain regular IV Saline infusions at home for my Dysautonomia. As my gastrointestinal difficulties continue to increase I am finding it difficult to add any more pills to the growing number I must take by mouth. My GI tract really can’t tolerate anymore by mouth, so for people like myself and Bettemarie Bond, going the IV route makes better sense than to try to force more pills down one’s throat into a stomach which is already compromised and most likely not absorbing what it takes in.

For those who can get it IV Saline can make a notable difference and allow one to enjoy life despite one’s chronic illness, while those who cannot get it often suffer a long and agonizing medical decline and de-morale as they continue to find these infusions always just out of reach and at best short-lived while only receiving them in an infusion center or within an inpatient setting (insurance or money permitting).

Notice in her video clip above that Bettemarie says she had her heart rate drop during a procedure. This just happened to me today as I was having a Colonoscopy. I had a really rough time even before going under mild anesthesia; suffering chills, dehydration, and changes in heart rate, as well as Myoclonus triggered by the body’s inability to keep me warm enough.

Ironically the nurse who had hooked up my IV saline before I was taken to the room where I had my procedure had in her haste not secured the tubing to the IV and another nurse found me bleeding all over the bed and the Saline half empty leaking on the sheets. Having gone through drinking the prep (which invariably strips one of electrolytes) and then not drinking my usual 24/7 ice water in the few hours prior to the Colonoscopy left me all the more in need of all the Saline I could get. I had to fight to get the nurse to wait in recovery for the last bag to finish because she was in such a rush to hurry me out the door and to fill the bed with another patient. It was as though I were a car at the local Jiffy Lube rather than a human being in need of care after coming out of the Propofol.

It didn’t seem to matter how many times I reminded them of the fact that I am Dysautonomic. It was as though their biggest concern was for their employer and the dictates of the facility, not so much for my best interest. I found it crass that they were more invested in meeting a quota of patients served per day than in serving the individual patient with the dignity and care that all human beings deserve. (I will say that the one man in anesthesiology who mentioned my heart rate dropping was an exception to the otherwise high-volume/low quality workplace. He did go out of his way to make me as comfortable as possible given my complex medical fragility, and for that I am thankful).

Let’s all work together to make this legislation the law of the land. Leave a comment, share, write your representatives in Congress, and/or CMS and HHS, and sign the petition so that the Medicare Home Infusion Site Care Act can improve the lives of Medicare patients who need/benefit from home infusion. Although not a cure, these infusions can make life more meaningful and reduce suffering until cures can be found.

Managing Fatigue, and Conserving Energy

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Caramels – 50 Mg. each

                 25 Mg. Hard Candy     25 Mg.Capsules

With extreme fatigue I find it’s important to pace myself and to look for products, activities, and strategies that might at least over time increase my energy level or at least conserve it as much as possible.

One thing I am very interested in (especially since it has become more and more difficult to tolerate solid food) is Cannabis edibles. (I have been sampling a few that melt away to compare effectiveness, as all the pills I’m taking now are about to gag me).

While none of the products I’ve tried is the “real” stuff with all the elements of the plant, I know that as nutrients some of these products have at least some nutritional benefits of the hemp they are made from.

The above Fleur de sel Caramels with sea salt purchased from a small maker called Nutrient Bomb where I ordered on Etsy have an interesting flavor almost like black tea, and smooth and very stretchy texture. The seller also sent me a few of their other products as free samples. The pills I’m not really keen on (for the reason I mentioned earlier), but the hard candy squares were pretty good tasting and I couldn’t taste the CBD, although the flavor was hard to identify; somewhere between cinnamon, cherry, and mild menthol.

If nothing else, I’m trying to eat 1 caramel a day (I just got 9 to test out and see whether they improve my energy level or GI symptoms). So far I’ve only had 3 days to try them.

After seeing a new Gastroenterologist the day before yesterday I discovered that I have really lost alot of weight. I knew my pants were beginning to fall off me but it did’t hit me how extreme it really was until she mentioned it. I’ve started losing my hair too and it has on occasion literally fallen out of my head right in front of me without provocation! I have been finding it all over my bed sheets, clothing, etc., even on the carpet. I don’t know if it’s some sort of endocrine problem or what. It’s very strange, though. I hope it doesn’t continue dropping at this rate or I might end up bald!

My muscles often burn and even the slightest exertion takes everything out of m so I’m trying to conserve energy as much as possible.

I find that one of the best ways to do this is to literally sleep whenever I feel I need to and not force myself to stay awake because of the time of day or what I’m doing.

Sometimes I need to sleep alot more hours than normal in order to have the stamina to shower once a week, and since I currently don’t have anyone to help me I just can’t do it everyday as I would like to. I have to let certain activities go out of sheer necessity.

I find that alternating activities more often helps as well. Changing positions is very important if you are bed-bound because you are less likely to develop pressure sores, and if you have chronic pain and muscle spasm that’s triggered by sitting squarely putting pressure on your butt, then shifting to one side or the other can make things easier.

Being in pain in itself can wear down your energy and aggravate fatigue and it can make you irritable. I find sometimes pain creeps up on me before I realize it (because I’m so used to it), and all of a sudden I feel awful. I try to identify as best as I can when I’m starting to have pain and take my pain medication as soon as I notice it.

At times I have mistaken it for fatigue when it was actually pain starting up. I have now become pretty good at recognizing this pain aura and know when I need to take care of it to prevent a cycle of pain and fatigue from being set off.

As I also have some severe sensory issues I know about my body that I cannot tolerate any type of suffering for very long before I’m in all-out sensory overload. Symptoms I find are causing significant distress need to be taken care of expeditiously; no waiting around and procrastinating. They need to be treated now. This is something I was not able to get through to my GP, but it is absolutely crucial that any physician working with me understand this and respect it because it’s not that I’m being demanding or being a diva, but that I really can’t stand it. With the way I am wired, this is not a choice or a mere matter of convenience as some may assume, it is a need.

So if any of you readers are in the same boat it might be good to try to have a talk with your doctors about this as early as possible. If they are truly interested in helping you they will understand and try to accommodate you. If not, then it’s better to find out sooner than later after you’ve become invested in that doctor/patient relationship and find a doctor who will understand and meet you where you’re at on this.

Maybe I made the mistake of not telling mine this soon enough, but I think I was less aware of it almost 13 years ago when I began seeing him, so I’m not sure I could have made the connection back then. It has been a long process of self-discovery to fully understand how my brain and body works, but now I know alot more than I knew then and often learned things through rough trial and error.

It takes more energy for me to withstand protracted suffering (pain, stomach upset, near syncope, etc.) than it might be for somebody who does not have sensory issues. It’s as if somebody turned a dial way up and the longer I go with untreated symptoms the more excruciating it is. Someone who does not experience this themselves cannot ever fully relate, but a truly compassionate doctor will take your word for it and not expect you to jump through yet more tiring hoops that only make your life more difficult and deplete your energy.

My not being treated for my Dysautonomia since November, I’m sure, has taken a toll on me both physically and emotionally, and it occurred to me that it might actually be causing me to burn fat and muscle at an unhealthy rate. I suspect I’m probably in ketosis.

This state will deplete the little energy you have remaining very quickly. I’m trying to drink some Pomegranate juice I still have in the house in-between drinking my ice water, as Pomegranate is a super-fruit filled with anti-oxidants and has lots of nutrients in it.

When I need something from the kitchen I try to bring everything in there I need to at the same time, and everything back from the kitchen I need at the same time.

Although I’m in a power wheelchair I get fatigued very quickly just sitting in an upright position and the one I currently have has no neck or headrest so my neck can’t hold out unsupported for more than about 15 minutes.

Having the right adaptive equipment can make quite a difference. I’m working on getting a better chair that will support my body more equally and allow me to recline if I suddenly start to feel faint when I’m up.

Whenever possible I also try to put my forearms on the counter when preparing something, I now don’t bother putting dishes inside the cupboard like I used to, but keep them on the counter so that I don’t have to reach and strain to get a plate or a bowl after taking them out of the dishwasher.

Mental concentration for long periods of time tires me out, so I try to break up those activities and when I feel worse I stop and either lie down and totally rest or sleep, or I do something that requires less intense concentration.

I recently went onto Listia , (which for those who are unfamiliar with it is a site where you can get items for points rather than money), and bid on and won two adult coloring books. Being an artist who is used to drawing, painting, and making jewelry, when I saw these becoming popular my first impression was that is was a little bit wussy to color prefab designs.

However, as I have gradually lost some fine motor abilities in my hands when it comes to the type of art I have done for years and now find impossible and frustrating, I understand the appeal of these for adults with chronic disease.

I think what it is that is so freeing about these is that certain types of executive functioning such as planning out where to position an original design on paper, perspective, and composition require the artist to expend alot of energy.

When you are healthy you may not even be aware of it, but when you’re ill you definitely feel as though the act of creating (the very thing you love) becomes a chore of monumental proportions!

Not being required to do these things that tax your brain and attention gives those of us with chronic illness a break from having to plan things out to the 9th degree, an activity which can sometimes just be too much, especially on days when we have alot of pain and/or fatigue and brain fog.

I would love to hear from readers what you do to conserve or increase energy. Please feel free to leave a comment and to subscribe.  🙂

 

 

 

 

 

A Strange Irony

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Things have become increasingly precarious as time goes on. I am used to spending time alone and often prefer it but it doesn’t really hit me how alone I am until I find out I need help with certain things and can’t obtain it, yet can’t do certain functions myself either. Then all of a sudden it hits me that there’s nobody there but me, at least noone reliable. With my body becoming less and less reliable that is really becoming a problem.

The past few days have been unbearable with the dysautonomic symptoms out of control and nothing I can really do to stop them. The near fainting spells wake me up from sleep and along with them comes heart arrhythmia; my heart pauses and then beats weakly with a faltering type of flutter. I feel so weak now and just want to rest. I’m finding now that my GI problems are becoming more baseline and that I can’t tolerate much by mouth except yogurt and applesauce. Last night the applesauce didn’t even sit as well in my stomach as it had just the day before. The previous day I’d tried making a rice bowl with cheese and some sour cream and some seasonings and ended up in bed on my side clutching my stomach. It felt as though by the next morning my food was still up in  my throat. It was not digesting.

Because of all the stomach upset I have not been able to take most of my medications. It’s harder and harder these days to take anything by mouth but my ice water.

I’m now running out of things I can eat in the house anyway and have neither the money nor the stamina to go out and get more from the store.

There was one person who shopped for me occasionally but he has dropped out of sight for weeks now and I’m not sure what has happened to him. The few people I know locally seem to always have tenuous phone and internet connections. They either don’t receive messages due to a technical problem or else their services are cut off on any particular month for non-payment.

Today I got word that my application for the Independent Care Waiver through medicaid was denied. The Reason? Because I am “wheelchair bound and have no circle of support” both things I have no control over. I wonder what kind of people came up with those harebrained regulations?

So if someone is in need, is disabled, with limited mobility and has no support then the response is you don’t give them support? How much logical sense does that make? 40 hours of service a week is sure better than nothing! I would take that if that’s all they can offer, but somehow my voice doesn’t count. This is another example of the patient’s needs being totally and arbitrarily disregarded.

Two more weeks to go before I find out about the other waiver. That one gives you less hours but doesn’t have the requirement that some person in the community sign a form, so we’ll see where that leads.

So nobody’s regularly checking on me locally now and things are worse than they were several weeks ago both in terms of people coming around and in terms of my health.

I have also been unable to reach my son. His new phone contract is now long distance if I call him but if he calls me it’s free to him, but I now get a generic voicemail when I leave a message. Emails have also been unsuccessful. They go through but no response.

I need somehow to reach my aunt to let her know that I will likely need someone to go with me to some of these out of town independent evaluations. She would probably want to know but I have heard nothing from my cousin for months now from her Facebook account who had said she’d contacted her and a few of her children after I got out of Piedmont.

As for making new connections, it’s a bit late for that. I’m not much more than a pet rock at this point, lying in bed only able to sit at my computer propped up on pillows. Honestly, who locally would want to know me? I’m sure they’d be bored after a few weeks at best. I can’t really go places, I have no money to go out to eat these days, and if I did the food would make me sicker. Then there’s the fact that my underlying disease is untreated and totally out of control and this makes me not the best company because I have to first focus on saving my own life on a daily basis. That doesn’t make room for much talk of everyday things that others take for granted and are part and parcel of most friendships.

On my better days I can talk about art and politics, and animals, and if I don’t have to talk I’d much rather hear about their lives than talk about my own as answering questions in itself has become taxing and painful, but my better days are getting fewer and fewer now.

Bills are falling by the wayside because my brain can’t hold any more than what’s right in front of me right now. Processing is at a slow crawl.

I find it hard to do much at all today besides making sure my glass of ice water has enough ice in it. Going to the kitchen even in the wheelchair is exhausting to go get more ice, but I hope I can continue to do at least that because I don’t want to be further dehydrated.

Beneath the surface I am grieving a life lost and the realization that my days are numbered. This is not some sort of depression but a coming to terms with what is, and what could never be despite all my efforts. I never wanted it to end this way, but at least if it has to be I will die at home with dignity. If I don’t make it through then perhaps they will find out what’s really wrong at autopsy and if it’s genetic as I suspect these results will be shared with my son so that maybe he won’t have to meet the same fate as he gets older.

As with any disease, early detection and treatment are key, even in those without a cure. If my story ends up a cautionary tale then my life will not completely have been in vain.