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Years ago, I needed a new doctor for my now misdiagnosis and I found a specialist for that syndrome, which was odd for this city.  He was a PM&R physician and did a very thorough exam, but somehow was yet another provider who failed to realize that I actually had a genetic disorder: Ehlers-Danlos syndrome, classical type (EDS).

I remember that at my first consultation and after my exam, he told me straight out that he had no magic pill for me, but that what he could offer was compassionate care.  It was what I—a patient with a chronic, painful, and debilitating illness—needed to hear, even if he thought I had something else.

No one knows what happened, but a year later, all of his patients received a letter stating that the doctor would no longer be in practice there.  No other information would be given and I was transferred to an associate, but that was the first time I had a complete meltdown over losing a healthcare provider.

Prior to getting sick, I just had the doctors most have and maybe saw them 6 times a year for annual exams, refills of a few medications I took, and then the endless upper respiratory infections I’d get from every cold, which only turned into massive bronchitis because I was too busy working to go to the doctor.  But, things change when you get a chronic illness. I now have more than 20 medications, I have over 10 specialists who largely do nothing for me, and I spend 3 or 4 days a week in some waiting room, which literally makes me sicker.  When healthcare providers become your entire life, and not by choice, losing one is utterly devastating as the process of finding another and dealing with records and forms I can’t see and every other hurdle you have to jump over in the U.S. is an utter nightmare.

I have been to 4 doctors for my EDS, formerly called something else, since I lost the one who disappeared and then the entire practice closed.  They were all inept or rude or left me waiting hour upon hour or all of the above. One, who I absolutely believe was an anti-Semite based on his country of origin and how friendly he was with everyone but me, actually said something so rude to me that a tear fell down my cheek in the exam room, and I wish with all my might that he had never seen that.

Right before my corneal surgery and my diagnosis of EDS last year, I found another PM&R who was willing to see me, as most weren’t interested in the misdiagnosis.  I had come from a rundown and horribly unprofessional practice where my doctor literally walked out the front door while I was waiting for him. I really didn’t know him as he spent maybe 2 minutes with me signing prescriptions and nothing else. The staff were rude and complacent and I was months behind in scripts for physical therapy and they could care less.

I knew this new doctor I had was smart and he actually questioned my misdiagnosis, but he seemed rather uncaring and disinterested by my second appointment like the others. I couldn’t see him well, but noted that he preferred to stand on the opposite side of the room and wouldn’t make eye contact with me as I can see color, like the sclera of the eyes.  If he has a social phobia, then he should have gone into research and not private practice.  It was a place to get my refills and scripts for physical therapy, which is how I view most providers in my life: robotic people who do the basics of their job while I get an extended stay at the Hanoi Hilton courtesy of my broken-down body.

One day, I was told I’d be seeing the nurse as the doctor was busy.  Well, that figured.  Unlike the doctor, his nurse was actually a person and she was friendly and talked and asked questions and was concerned.  So, I became her patient and didn’t see the doctor anymore.  I always took the last appointment since I can’t wake up and am really slow to get ready due to my pain and stiffness, and she would spend over 30 minutes with me and it felt like I finally wasn’t just a number or a nuisance anymore.

We tried a few other medications without much success as usual, she attempted to appeal the insurance issue with my physical therapy being cut-off, she was researching EDS as fast as I was, and since she was from Ohio, she always said she wished she could just stick me on a plane and send me to the Cleveland Clinic because she was so frustrated, and not by me, but for me.  I always left my appointment feeling better, even if there was no magic pill.  I had compassionate care again.

I’m on a 3-month schedule with the practice now and I had an appointment earlier this week.  There was a huge plumbing issue with the central line that affected my bathroom here at the motel, so I was running a hair late, but had enough time to get to my appointment if I drove fast and everyone does.  I get that I can’t see well, but I can drive better than the 20/20 crowd here and had my sclerals in, with enough lubricating ointment to make them somewhat tolerable, but it was like someone smeared Vaseline over the windshield.  The clinic is in a nearby town, so it’s a bit of a drive, but I can do it if I really try since it’s not in the direction of the sun.  What I didn’t expect was an accident on the arterial that leads to the freeway that created a backup for miles.

I called the clinic to let them know I’d be late due to the accident, but not more than 10 minutes, as everyone gives you a 10-minute grace period from my experience.  I was told that the doctor had to leave to meet with his lawyers and so I would have to reschedule.  I didn’t understand and had about gone through the wringer waking up earlier and getting ready and just driving.  I explained that I didn’t see the doctor—that I saw his nurse and I’d never been late.

It was then that the rude receptionist told me she was no longer at the practice.  It hit me like a ton of bricks, and she made up a lie as to why she was gone.  I knew I needed refills soon, so I was pleading with her, and she told me that I was talking in circles.  I just kept trying to be the squeaky wheel, but could hear my voice cracking and then hung up.  I was by a shopping center, so I pulled into the parking lot and just lost it.

How would I find my nurse?  Who could I talk to that would understand how complex chronic illness is?  Who would offer me compassionate care?  Certainly not anyone I currently see and not the doctor there.  My counselor, who is supposed to help me, has been putting me through the Inquisition for weeks and I rip the cuticle off my thumb in every session from the anxiety he’s causing me.  I felt abandoned, like I have felt my entire life.  The feelings about the former doctor disappearing came flooding back, as did everyone else in my life who had betrayed me: my family, my traitorous, best friends, the guys I had been with, the entire world.

I’m tired of this disease and the subsequent vision loss.  It’s been 12 years and there’s no hope.  The cure is not coming in my lifetime and the degeneration will continue—that much I know.  A million thoughts were flooding my mind and I went to a very dark place while sitting in my car, which is not uncommon—I’ve had enough and there is no meaning in my endless suffering.  I couldn’t breathe and was on the verge of having one of my major panic attacks.  I called the only person I know here—the one who gives me rides here and there—and asked that he take my cat, Moush Moush, but he wouldn’t.  I was begging him to take her to no avail and in the end, it was Moush Moush who saved me again, just like I am trying to do for her.  I promised her that I’d never leave her, and I won’t.

Very few people will understand this post.  A healthcare provider is someone most see for an infection or an injury or an acute condition that will either get better or kill you. There’s a gray area where those with chronic illnesses that steal your entire life live, and that’s my land.  I have staked a claim and it’s a lonely place that hurts my body and my mind. My nurse brought more light in, but now she is gone, like so many before her.

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  1. dyspatient says:

    Oh I am so sorry. I do get it. That’s terrible that the nurse is gone, and worsened by the practice not letting her patients know, then being snippy about it! You really do live in a black hole of medical practice out there. I hope that doesn’t come across as crappy, I mean it as a validation. When I lived in ye olde new england outback, it was pretty bad but what you describe where you are is so much worse. I wish I could bundle you up and send you to someplace civilized. I know you need the desert though. 😦

    On the forms: I’ve decided to start insisting on being given either electronic forms to fill out or paper forms in advance. I can see them, but I can’t fill them out legibly in the time I have before appointments. And when I’m done scribbling my way through them, my hand is killing. Neither of us should need to go through this. Not when the form likely exists as a document file on a computer (or could be scanned in for you). This is a fully reasonable expectation and I intend to start exercising it. I’m sick of this particular hoop, and it’s one that I think I can do something about.

    I’m glad your friend didn’t take Moush. I know this hurts horribly right now but you need her and she needs you.

    I know life is so muted now, that it’s squeezed through a pinhole, but it is still life and there is still something to get from it. I also know that thought isn’t always comforting, so here’s what I think of when I’m feeling the Deep Dark Despair: What if what comes after is the same or worse? Better the devil I know.

    • Thanks D,

      Yes, it’s the DDD. I forgot about that. I cancelled my appts for the rest of last week and haven’t left since, but they all start up again Monday and now more stress. I’m just so tired of this. I’m on jet lag all week due to being nocturnal and then trying to drive and deal with the horrid sclerals. My vision is getting worse and freaking me out to no end and I hope it’s just from all the inflammation from the sclerals that I suction out the minute I get back, but I don’t know and now I’m having problems with the optom because his idiotic receptionist–I call all of the girls in doctor offices here Juanitas after one infamous Juanita–billed things wrong and they owe me money and it’s turned into a 3 month fight. So, I don’t know where to go and don’t even have an extra day to go.

      Per the forms, most don’t do anything electronically here. Yes, a big, black hole of 1-star medical docs. My GP is so inept that if I have CVS send a request for a refill for my levo, etc. they don’t get it because they only use a fax. Really? So, I have to call CVS and sit on hold with no mins on my cell so I can tell them to fax the refill request to the doc and the doc’s office won’t call it in for you! I’m trying to replace her but have had no luck in finding anyone and the GPs here do nothing but deal with my thyroid and wellness crap so why do I need one? I need a central clearinghouse like your PCP who actually helps me! I have had most places mail the forms in advance (minus the crappy GP who “has no outgoing mail,” but I really can’t see them and it’s stupid–they should be on PDFs online or something. Well, what are we going to do? I’m dealing with private practice here so I can’t change them all. You probably have luck on your side with the big hospitals.

      Just fed up right now and when the DDD blows in, it’s really bad. I just hope Moush Moush will be okay (and that guy is really not a friend and I’ll leave it at that) and she’s over 3-mos post-op, which seems a bit promising that the med might be working, but she has 3 doses left and the compounding pharmacy ran out as I called her doc last week to reorder! I’m not kidding and it’s a huge pharmacy. I have to call her oncologist tomorrow before my doc appt. to see if we should spread the doses out even more or what as I miscounted and thought she had 6 doses for some reason. They think they’ll get it in by mid-month, but then they have to compound, ship to her doc’s, his asst. draws the syringes, and I need someone to pick them up as it’s west and really far. Ugh! So, all the crap hit the fan last week and then this is the result. How much can one person take? If I could take anything that controlled the pain, I wouldn’t even be complaining.

      Sorry for the novel and I really appreciate your comment. I just want to stay in here and be on my sleep schedule and not leave, but nope. And, its freezing now! Argh.

      • dyspatient says:

        Wow, yeah that’s a lot of crap in a really big fan.
        I’ll let you know how the docs office respond to my request. I’m going to ask the doctors directly, not the receptionists…..and btw, I have a similar habit of assigning a universal name to the “unhelpful” confounders in administrative positions, “Judy”. Named after a very awful secretary in my grad program, and also my ex-mother in law. I am very amused that we BOTH do this and that we both picked J names. They are not rare in the world of medical care, unfortunately.

        That’s terrible news on the Moush med front. I hope it comes in soon!

      • I stole the Juanita thing from you! When we first met on here, I saw the Judy reference in your “about” section but forgot the name. I was like, “Omg, that’s just like the Juanitas!” Funny that they both start with J and are named after someone (although the ex mother-in-law is the best). I know I made a reference to it when we first chatted and you also made the funniest face ever–it was like: 8/ or something. I think it was how some docs look at you when you’re talking? I seriously wanted that for the title of a post, so maybe you should use it! Oh, I hate that original Juanita with her vintage 2000 chunky highlights–I lost my old PTA because of her. She was so jealous of me (over what?) and acted like a 12-yr-old with her snide comments and backhanded compliments and I got so sick of it, I just left that PT clinic for good. Well, you made me laugh after a long day dealing with doc #1.

        Let me know how it goes on getting everything electronic, but I think I’m SOL here. I’m surprised they don’t use the donkey express still. :/

        So, the issue with MM’s med is that it’s compounded due to her small size (tea cup cat). Lol. Her doc’s assistant, who is so great, said that Pfizer has another company dealing with the meds sent out for compounding or something (?) and they have had this issue before with other meds and it’s lasted for months. There are no studies on this med in cats and few in dogs, but the regular pills aren’t supposed to be cut, but they spoke with an oncologist who does that. If nothing else, I’ll have to go that route and deal with pills and worry about them being broken up. How stupid! It sounds like something that would happen to me and we’re all into our routine with 2 liquid meds every 3 days and good to go. Argh! Hoping for a miracle there…

      • dyspatient says:

        Ah I had forgotten about the genesis of The Juanita. I am referring to it as a single entity you see, because, as with The Judy, I think perhaps it is a manifestation of an archetype….

        So awful when the games drug makers play trickle down and affect even our animals. I hope they get something figured out. That’s a really tough position to be in. I’m hoping for a miracle too.

      • Yes, the manifestation of an archetype. I would have written a post on it but mine would have sounded racist. Well, it’s not my fault that one race dominates the entire support staff/med. assistant world here. Oy vey.

        Oh, don’t even get me started on the big pharmas! It’s chemo people! Hello? I’d also like the entire world to know, speaking of healthcare and industries that should have been cut at the knees via the ACA, that as a card carrying member of the Democratic party, I’m in hiding right now. I really wonder if MM and I could find any good docs in the sand dunes of Mauritania, because the weather would be just swell there. :/

  2. It broke my heart when I read your post, which I think was last Friday. I so wish there was something I could do to help – I’m praying for the lottery. No one deserves to go through something like that (Actually, perhaps the rude staff do!). Although my situation is different, there were many occasions where I also went to that dark place. Although we both know that is not an option, there are moments when things get unbearable. I don’t come around much anymore because I’m sorting many things. Sorry I’m not being as supportive as I should – you have made such a difference in our lives and I really owe you. xo

    • Thanks, Sheep, and good to hear from you. Things just pile up on my plate and when it gets so heavy, i just crash. The dark place is actually a reality to be very honest. I only have MM and she is still okay at almost 4-mos post-op and still on her chemo (fingers crossed), but nothing is certain and she’s not a spring chicken. I don’t have family or friends anymore, so I really don’t know what would happen if she weren’t here. I don’t even know why I’m forced to be here just to live in chronic pain with poor vision. It makes no sense to me. I never talk about this aspect of EDS and am not blogging much, but I know the statistics and that I’m not the only one, so I figured I’d write about it.

      Yes, money would help in so many ways (housing, a driver, better docs elsewhere, etc.), but you know how it is. I’m still going to be stuck in this body and not be able to work, so where to go from here? Ugh–so stuck and this is NOT me. I was the queen of reinvention before I got sick.


      • I hear you A. These words, I’ve heard them many times from Gen and she still speaks them when things get really difficult. Even with my support she tends to want to let go at times. The fact that you were so active makes it even more difficult for you. Regardless, it’s not an option right now A, because you may feel very alone, but we’re here. I may be far, but I often think of you and I’m hoping that some day soon something will happen that I will be able to connect with you in person. Anyway, call me crazy but you made a tremendous difference in our lives. It all started with D, then you, and then Katie. I’ll be forever grateful regardless of what happens on our end.
        Gen was given an emergency appointment with Halifax for a “CardiaC Evaluation”. I don’t know what happened, but it’s with the Vascular Danlos specialist. On top of the letter, it said “If you have trouble standing or walking…” and when I read that I started crying. For seven years I felt like I was locked in a sound proof room where no one could hear us and all of a sudden it’s like a door just opened. At this point, it doesn’t matter how sick she is because she just is. But at least now we’re trying to make her more comfortable.
        And again, I hear you A. Just know that. xox

      • Thanks Sheep,

        All I have are my online friends so I’m glad you’re still around as I figured you were gone. I’m glad I could help–it’s just my nature and that’s why I had the career I did. I thought of you as I had to get something for MM at the pet store and saw the birds (and the rats) and thought of poor Blakey. 😦

        I don’t think Gen has VEDS in all honesty–especially since EDS runs true and you have some suspicions, but I’m glad she’ll be seeing a top specialist. I just haven’t seen her issues in VEDS and I’ve studied it due to my minor criteria, but she can easily get the blood test–mine took about 1 month and I’m still haggling over the bill a year later. Ugh.

        I presume you have seen the VEDS criteria? There’s a specialist in my hometown and people can also call Dr. Hal Dietz at Hopkins. He actually takes calls! So, perhaps the doc in Canada can contact him as he’s a pediatric cardiologist who specializes in genetic CTDs (one is named after him and another doc) and may have a clue as to what’s going on. If I won the lottery and weren’t so sick, I’d get tickets for you two, and D, and yours truly (and MM) and we’d all just set up a tent at Hopkins. I don’t know what they could do for me, but worth a shot.


      • I don’t know what they’re looking for to be honest. I think they just want to make sure there’s nothing wrong with her heart. They told us in March (well the nurse practionner did) that everything was normal, but then I read the stress test report and some results were abnormal (without explanation). I know I have a bleeding issue – which they essentially confirmed I had from my medical history when I was at the Genetics appt with Gen. Gen has really weird stretch marks all over her body and in really weird places. Not sure what that is. My guess is that she’s not a type III (Is a mix of types possible? I would think so). Anyway, I’m not too worried about it, but I do want them to make sure they’re not missing out on something important. She seems to be losing her hearing and presenting all sorts of other weird things. For some reason, she’s often sick and bed ridden for days at a time. The good thing is that she’s no t always using a wheel chair when we go out anymore – sometimes she can walk 30 meters or so. That’s a huge improvement. This year she was able to give out treats at Halloween. Gen’s case is not at all like what I hear from other EDSers. She can barely do anything at all. Most times she can’t have food at the table. Her condition, whatever it is, is getting progressively worse…

      • I think she has cardiovascular problems (so do I, but different), but they’re not the same as those seen in VEDS. Her stress test would be a mess due to the OI and decondtioning, so not an indicator of VEDS (that’s ruptures). I also don’t believe OI is seen in VEDS per anything I’ve read and also due to the fact that the vascular system is weak, not stretchy. Did she have an echo and did that reveal anything? I have 3 issues in my heart and I have seen so many studies indicating heart issues with CEDS/HEDS. Per the stretch marks, that is seen in all types of EDS. I don’t have abnormal stretch marks, but many do from what I’ve read.

        Well, I really can’t do anything either, but I understand–I can walk and all that. It’s just that the pain is so bad and that brings on the fatigue and I never want to leave or do anything–and then throw in my vision. It’s a huge task to just take a shower and get ready when I have to go to an appt. I feel like I’m 200 years old most of the time.

        I have heard of hearing loss with EDS–here’s some basic info: http://www.ednf.org/index.php?option=com_content&task=view&id=1250&Itemid=88889049

        I’ve also heard of people who have EDS and Sticker syndrome (also involves collagen) and not all have the facial characteristics: http://ghr.nlm.nih.gov/condition/stickler-syndrome

        Hope any of that helps and sorry things are getting worse again. She needs a diagnosis and I really think that’s only going to come from Baltimore if the geneticist in Halifax hasn’t figured this out. Does your health plan cover seeing specialists in the US if no one is up there?

        A x

      • Thanks for the links A! I’ll getting around them. I’m now doing lots of crazy for myself, which is great but keeping me so busy it’s crazy. I even enrolled in a graduate certificate as CRA!

      • No worries and glad to hear about the grad certificate. That’s great news! I hope 2014 will be the year when the wind finally changes direction. 🙂

  3. So glad Moush Moush is doing OK – Sweet little girl. xo

    • Thanks and I just hope I’m not being a blind optimist as she’s still in the danger zone, but past that scary median of 79 days, although her type of soft tissue sarcoma is rare and not well-studied. I need to head to your spot, but while I was on WP in the middle of the night yesterday (literally replying to someone in Israel), the fire alarms started blaring and I somehow got dressed and got MM in her carrier–her poor ears–and we managed to get out of the bldg via the dark stairwell AND my vision and sat in the car for a couple hours. It was so cold, but we survived. Argh! That’s what I mean by the plate getting heavier and heavier and I’m getting REALLY tired of the fire alarms–even wrote a post about the real fire in here a long time ago. Tomorrow, I have the doc who started this whole fiasco last week to get my scripts and I better be earlier, but slept until 6 pm tonight due to the fire alarm issue (screaming), so it will be a GREAT day. :/

      • Poor little Moush Moush. I hate these alarms. Just the house one drives me crazy because of my dogs. Animals are the best thing ever – all they ask for is love and the love they give back in return is impossible to measure. I’m so glad you have her and I’m happy you’re being optimistic about the whole thing no matter how bad it is. Being positive about it will make you spend more quality time with her (does that sound crazy?) as you need to appreciate every little moment you have with her. xo (and XO for Moush)

      • Thanks for your thoughts about Moush Moush! I’m a cautious optimist so it’s all rather hard.

        The alarms in here are 100 x louder than anything in a house and everything goes on backup, like the lighting, so it’s rather creepy (plus those fire doors slamming shut). Ugh.

      • I honestly don’t know how you can live with these alarms. I suppose you don’t have much of a choice given your current situation. 😦

      • You got it! I presume it’s due to the international building codes so that even the hard of hearing will wake up or something (while the rest of us lose our hearing). :/

  4. So sorry for all of the heartache and frustration, not to mention the just day to day hell of living with EDS and vision problems. 😦 This is such a heart-wrenching post and I can relate to the sadness so well by how you write it.
    To lose even a half decent health care provider in the sea of indecent ones we deal with is enough, but to lose one or more who’ve had the rare grace to show you some compassion is horrible.
    Big hugs xx

    • Thanks for your comment, Katie. You said it even better than I could and it was really just the last straw with so many things that have gone wrong for months on end. How much can one person take? I know you’re in the same situation with no one knowing much about MFS/EDS, but at least my nurse was researching it, as the doctor just goes by the textbook which makes me feel like he doesn’t get it at all. I had to go last week to get my scripts and he was friendly, but I couldn’t really talk to him and there was a student with him and he was whispering things about EDS and I heard “tall stature” and I’m average height and wanted to scream. My grandfather looked very Marfanoid (not that I measured him), but I know more EDSers of average height than not, which tells me he spent a day on the genetic CTDs in medical school and that’s that. Argh!

      Thanks for dropping by and I was wondering who else was up at this time! Lol. This is like noon to me on my days off and am already dreading Monday. :/


      • It’s frustrates me how many doctors will rule out MFS or related disorders if you’re of average – or even less than – height. I can’t remember the exact numbers but there are definitely a huge amount of people with Marfan Syndrome that are not tall. And as far as EDS, is it even usually associated with above average height?

        I think with MFS the Marfanoid habitus is just too commonly thought of as always occurring together with it.

        Usually you can catch me up at this time lol not always, but pretty much. :p
        And boo Mondays. :\ I hope it’s at the least an okay day for you though.


      • I will try to research the stats, but some EDSers do have a tall stature or Marfanoid habitus. It’s that overlap issue and my grandfather definitely stood out in his family that way and he was hypermobile before the RA set in. I have heard that not everyone with MSF has the habitus, but that most do. Hmmm, will need to look into it more as stated. I did read (where?) that the medical textbooks state that EDSers are typically tall, so that’s what the not-so-well-versed docs think. :/

        Well, rather late so I think tomorrow (today) will be a bad Monday. Ugh!


      • My geneticist told me that about half of people with MFS are not tall, but I don’t spread those stats around much because I’m not sure where he got them or how accurate they are lol. That was the first time I actually had a doctor tell me that not everyone with it is tall though!

        I definitely got the tall part but whether it’s directly from my disorder or not is hard to say because I do come from a very tall family on my mother’s side. There are lots of tall people in my family without the disorder as well so it could just be a coincidence.

        Hope your Monday wasn’t too bad. xx

      • Hmmm. I actually can’t find any hard stats, either! I really wonder about 50% in MFS–seems too low, but you’re the expert there! I found this dinky abstract that shows a Marfanoid habitus is seen in EDS, but I believe when they say “VIA” they are referring to kyphoscoliosis, which I know as type VI and super rare, so why all the tall EDSers? (This is from chatting with primarily women who say they are tall and very thin.) Oh, there is also literature that says people with VEDS typically have a short stature and short fingers, but not always. Go figure. http://www.ncbi.nlm.nih.gov/pubmed/317927

        Here’s another odd thing–everything written about keratoconus mentions the CTDs which is how I connected the dots, so how come no one has KC/EDS aside from a few people I’ve run across? Argh! I figured it would be all over EDS land, but nope. The common ocular issues seem to be neurological in nature, which is clearly not my issue. Back to the drawing boards.

        Oh, today was so bad, but so is every day with an appt! Someone was hammering in here super early so I got NO sleep and that leads to more pain. Then, I had PT and thought all the weights were on the wrong settings because they were soooo heavy. Argh! I love the guy who helps me in the gym but he must be sick of my moaning and groaning. Lol. Off to appt #2 tomorrow!

        A x

  5. ShimonZ says:

    It’s very difficult, the sort of relationships we have with providers. Even when we like them… it’s so one sided. And when we don’t, it can be pure horror. Compassionate care is the best… and of course, there is never a magic pill. Because those magic pills always come with a lot of side effects. For the first 60 years, I never saw doctors at all. And since I got the heart disease, I still see them less than you used to see them when you were more or less healthy. I just don’t care for the relationship… as I’m sure you can understand. I hope you find a good nurse again… and a good doctor too.

    • Thank you for sharing, Shimon, and I don’t care for the lopsided relationship I have with most MDs, either! Well, this ordeal was the straw that broke the camel’s back and I just lost it after so many months of awfulness. I never had health issues before my genetic disease reared its head in my late 20s, so I understand going to the doctor for an infection and some antibiotics, but with so many systems of my body falling apart, I literally have to go and it drives me crazy as it’s a full-time job and I don’t feel well, but I’ll feel worse if I don’t. This doctor–formerly the nurse–is the one I see for my genetic disease but he really doesn’t know much about it which is typical. I need 3 medications from him that keep my pain at around a 7 if you use the 1-10 scale. I also don’t sleep, so I need that drug too. These meds keep me from vomiting all day from the pain, but don’t allow me to live a life in any sense of the word. My disease causes my body to produce defective collagen which is the largest protein in the body so the connective tissue becomes very weak, and no pill can fix that. So, as I’d rather sleep–even if poor-quality sleep–and not have level 10 pain and vomit all day, I have to go. Then, I have the other 10+ specialists, physical therapy to keep my joints together, and on and on. Oy vey!

      I will try to head to your spot soon as I’m up to my eyeballs writing medical histories for more doctors I have to see. Who writes their own medical histories? I should have an MD after my name or get paid for this! I really could use nationalized healthcare and not this for-profit garbage we have in the US, but it sounds like you have issues with your system, as well. :/

      Hope you are doing well, my friend.

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