Insurance and doctor hell

I won't bore you with the varied and numerous details about trying to get a lab and a doctor work together with ones insurance company when there is a daft blood test that is only done at particular places, but think of a very frustrating thing and then multiply it by 100! I swear, the more ill you are the more difficult it is to get treatment. Something has got to give in this bloody country with health care!

Just to give you an idea - the blood work taken a couple of weeks ago, one set cost over $700 - UHC paid $30 of it. (this was w/ an in-network lab, G-d only knows what would've been charged for an out-of-network lab) WHY CHARGE SO MUCH FOR A TEST THAT IS ONLY $30, if that??? The other set was over $800 and UHC paid $40. Now this is great if you have insurance, but for those millions of people who do not have medical insurance, why are they getting charged these exorbitant costs? It's no wonder you can go bankrupt and lose your home from being sick. Congress better sort this out and properly soon!

So the long and the short of it and what should probably be a few valiums later, I am going to Mt. Sinai tmrw am to the Phlebotomy lab for a bleeding test and a Platelet test. Even though Dr. Wu doesn't have privileges there, they are (Thankfully) letting me have the blood tests done there. Most hospitals won't let you do that - because everyone in the medical field are evil horrid people. Sorry I do have a few dr's I like but at the moment I hate the whole field.

Oh - and the pins and needles are worse so nerve damage is progressing - hopefully by the time we sort this out it won't be permanent. ARGH!

Day from hell

I just am SO wiped out still from yesterday and have this horrid headache now for four days and I'm sure it's all stress.

I spoke to Dr. P yesterday and he said after consulting with some colleagues they agreed that I should have a blood workup to make sure I don't have any underlying blood conditions. The reasoning for this is that because my vessels and tissues are so friable, they don't want me to form a haematoma whilst doing the spinal epidural, as then I would be paralyzed. I appreciate the caution, but it also delays everything. His assistant gave me a list of 3 haematologists but said that I needed to blood taken first so I could bring that with me and to go to my PCP as soon as possible. It didn't make sense to go to the PCP for blood when she had nothing to do with it, but the assistant sounded so sure I said ok. Being brain dead, I just do what I'm told. I rang up Dr. Rosen and her office said to come in. Which I did. And then I sat and waited for over an hour to see her. And whilst she's normally very understanding and accommodating, she was uncomfortable taking blood that she wasn't interpreting and not really knowing what was needed. Which I have to say I agree with. It didn't make sense to me and I did ask Dr. P's assistant over and over if she was sure that's what I should do. So I left and was quite disheartened. I picked up some food on the way back to the office as it was about half two at this point. When I got back I rang the first haematologist on the list from Dr. P. That dude was retired so the put me on to another dr. Of course my luck was that the person answering the phone was on her first day and knew nothing. She said she would have the other girl ring me back when she returned. In the meantime I rang Dr. P's office after finally inhaling my food, and filled them in. I then rang the next haematologist on the list, a Dr. Wu. Thankfully he was able to see me at 16.15!

Now you have to understand that throughout all of this I was under the impression I'd have some blood drawn, wait a couple of days and all would be groovy and I could go get the epidural. You have to imagine my surprise when Dr. Wu, after asking me a ton of questions about bleeding, explained the procedures. He first takes some blood and then sends it off for (I could have this backwards so excuse me) I believe the coagulation studies, which take a WEEK!!! THEN, after those results, he has to send me to a special lab at Beth Israel where they take more blood and do some sort of platelet study, which takes a couple of days. Whilst hearing all of this all my head is doing is calculating how soon I am actually going to be able to get this epidural. And it's not till after the 4th of July weekend by my calculations. All of this make me a very unhappy person.

So after I leave Dr. Wu's office, I ring Dr. P and get to speak to him. I was sort of flipping because no one had warned me about the length of time. He said he has to make sure about this and I do appreciate it because the worst cast scenario is that I bleed and get a haematoma on my spinal cord which would paralyse me. I don't really want that, but at the same time I am losing my mind from the pain. I'm at the point that I'm actually trying to convince myself it's all in my head and I'm imagining the pain. If only! So I ask Dr. P about Dr. Rosen's suggestion on trying neurontin, which he says is similar to Lyrica. I have been SO afraid of Lyrica because I've heard such horror stories. So he said sure he'll ring in a script for me. Groovy.

During the bus ride home though I was debating about it and when I got home I decided to go online and look up more info before I picked up the prescription. Very contradictory reports but some positive about nerve pain (the weight gain totally freaks me out) but in the end I decide to go ahead and try it. Ha, like anything is easy at this point. I get to the chemists and he tells me the doctor requested a specific number of pills, but the insurance co will only fill a lesser number. I said that is fine, as I am only going to try it for a week or two until I get an injection. He says ok, and puts it into the computer, which of course comes back saying that the doctor has to ring the insurance company for prior approval, and that can take 2-5 days. At this point I don't know how I didn't just fall on the ground and start wailing. I think I was too tired.
I rang my mother and ranted for a while, because everything that should just be simple isn't. I hate insurance companies and I really hope the President gets his public health care option, because we really do need to level the playing field here.

So that was my day from hell. I've emailed Dr. P today about the prescription problem, and I'm sure the pharmacist has rung him as well. So now it's a waiting game to see if I will get any relief or I will jump off a building waiting for some.

Venting for the day:
And if I hear one more person whinge about having a cold or the sniffles I just might kill them. Someone on FB yesterday went on and on about having a little cold and how he was sent home from work and was devastated. PERSPECTIVE PEOPLE. I know I'm not as bad as some people, but come on, a bloody cold!?!?!? Get over yourself!

Humpty Dumpty strikes again

ARGH! I just want to scream! Or jump off a roof, or in front of moving bus, but there's that daft thing in my head called a conscience that won't let me. I CAN NOT TAKE THE PAIN ANYMORE.
Tomorrow will be FIVE WEEKS of agony with this neck thing. And it's bad. I can handle "normal" pain, after all I've been through I definitely have a very high tolerance, G-d knows, but this is slowly driving me delirious.

I am sad to report that the shoulder cortisone injection and the trigger point injection did absolutely NOTHING NOTHING NOTHING. I emailed Dr. Panagos on Monday and didn't hear back, he's busy I get it but I'm being a selfish person for once and need help. Tuesday I rang his office, and his assistant said he was on the phone but would ring me back directly. Unfortunately he didn't get to until Wednesday am. He did leave a message apologising and I rang him back as soon as I received it. He asked me a bunch of questions and agreed that something needs to be done. I have no life, I get to work, by about 16.00 I'm dying in agony, then I go home directly after work and lay on the couch until bedtime, and in the middle drink wine and take klonopin hoping it will help me sleep. I still can't even lie flat on my back. Anyway I digress. Dr. P said he had put a call into Cornell for a consult as he wants me to have the spinal epidural in a hospital setting. I'm ok with waiting an extra day or two so it's done correctly but I need to know that it's going to be done soon. He said he'd ring me back and I told him I'd be in the office until 16.00 and then had a hand dr appointment and he could ring me on my mobile. Sadly I did not hear from him at all. I ended up sending him an email around 20.30 asking if he had "any news at all???". My mother laughed at that. Hey, I'm desperate. I did ring his office about 20 minutes ago and spoke to his assistant. She said he was doing a procedure and would get to him as soon as possible. I said even if he just has a message and she rings me back, I just need to know there is a light at the end of the tunnel because I'm in misery. I did apologise for being completely brain dead as all this pain has made my brain turn to mush, even more than normal!

On another note, I saw Dr. Melone yesterday. I've been putting off this appointment because last year he said if the cortisone injection didn't work I'd have to have surgery. After my trip to London though and only using my big camera for 3 days, then suffering for a week after, I had to sort something out. At least the surgery is much more minor that the last 4, and the recovery seems to be quicker. I will have a splint on but will be able to use my fingers and go back to work in a day or so. I need to find out how long it will take for my hand to be in "working order" as well as if I will need PT after. Both from a time and health insurance perspective, since they only give you a very limited number of PT visits TOTAL per year. That might work for regular people but not the special ones! I also can't schedule it till I have this back thing sorted out. I can't believe I have to have another hand surgery. It didn't really sink in until today.

Anyway that is where I am at the moment. At least I have a gorgeous new niece and brilliant nephew to divert me on occasion.

EDS

Was reading another blog by an EDS sufferer and thought she described it as basic and easily as possible, so wanted to copy it because it's exactly the same for me. For her complete blog check here.

"Due to the EDS, every collagen cell in my body is faulty and is programmed to be too stretchy and ultimately becomes like an old stretched out rubber band. Normal rubber bands are tight and when you stretch them they bounce right back to their previous shape. EDS sufferers have collagen that is already over-stretched, so when you stretch it out again, it does not bounce back to its original shape, but stays lax and loose. Therefore, we’re super-flexible…but pushing our joints to their limits (as with stretching, yoga, Pilates, heavy-lifting) does long-term irreversible damage.

Practically speaking, this means that my joints are all incredibly unstable and frequently dislocate. Some of my joints bend completely backwards (I can do neat party tricks like bending all of my fingers to touch the back of my hand) while other joints like my wrists and knees bend about 5-10 degrees backwards. The muscles around every single joint also tend to tighten way up, to do the job that my tendons and ligaments aren’t doing: keeping my skeleton in one piece. Dislocations and always-tight muscles = whole body chronic pain...

Think of EDS like extreme rheumatoid arthritis in every single joint, with the addition of random dislocations. And “every single joint” means just that: fingers, wrists, elbows, shoulders, ribs, vertebrae , hips, knees, ankles, toes, etc. People with Ehlers-Danlos Syndrome experience acute chronic pain in some or all of their joints and experience neuropathic (nerve) pain in some or all parts of their body, and some even have heart defects that can cause sudden death. Most of us have additional problems with vision, digestion, migraines, pregnancy, and our jaws and teeth. It's an all-encompassing disorder. I have the "Hypermobility Type" of EDS, and my most serious symptoms are in my entire spine, hands, wrists, ribs, knees, and hips. Thankfully, I do not have the "Vascular Type" of EDS, which can cause sudden and early death."

Needles

Saw Dr. Panagos yesterday and he feels it's a shoulder & a neck issue. Of course, why should it only be one? Anyway, we agreed to do a cortisone injection into my shoulder and a trigger point injection into the muscle near my neck. He said one of his patients had a similiarish situation and they did this and it worked. He's quite weary about an epidural for my spine because of the HEDS (Hypermobility Ehlers Danlos Syndrome) as he says that the tissues in the body have easy friability and he doesn't want to make things worse in the long run.

I asked him what we could do if this works to prevent it from happening again. He said that he wants me to strengthen but no flexibility. He suggested Pilates, and I told him my hip surgeon told me not do that, but he said just do the strenghthening bits. When I feel better I will get out my old Pilates disc and see what's there to work with. I also asked him that what if the injection helps my shoulder but not my neck, and he said last resort would be the spine injection if I am still in agony. Fun stuff!

Dr. P also asked if I have been able to find out any biological information on my birth family. He said it would be very good to know what their health situations are. I told him that there is a group in NY fighting for our records to be open, and G-d willing it will pass on the floor this year, so perhaps in a year I will have some information. If you care to help, please get the information here, and help contact the key reps and senators in NY and say you support senate bill S5269. We need our bio/medical info - especially people like me!

Today I rang my chiro to update him and I will be going to see him next Thursday. He wants me to give everything a chance to work in and settle down. I am praying SO hard that this will work. Next Wednesday I have an appointment with my hand surgeon to see about my right hand/wrist. ARGH! It never ends!