Unbelievable response from my G.P.

It's bad enough having to go through this horrible pain day in and day out. But to have a Doctor who acts like he doesn't really believe that what's happening to you is real, and then not return calls and constantly push out and reschedule my appts. it's just wearing on my spirit and draining my heart of any fight that's left in me.
I scheduled this appt. with him months ago, and his office has called and rescheduled it four times! This last time, they had no dates available for a reschedule! Now what right? So I call and leave a voicemail specifically for him (on his personal voicemail) explaining that I had been in the hospital and that the ER doctor told me that my clot potential was high and that I needed to get in to see him right away. I explained that it's extremely troublesome to try to schedule an emergency appt with him and not get to see him for months. I could be dead by the time I get in to see him for crying out loud!!
I don't hear from him for weeks! Then, when he does call me back, it's at 10:45 pm and he goes into a rant about how I need to stop or "slow down" on all the sports and "athletic teams" I have been involved with all summer. WTH??? I said WHAT ARE YOU TALKING ABOUT!? DO YOU EVEN KNOW WHO YOU ARE TALKING TO? He continued that I had told him I was very athletic yada yada yada. Oh my gosh! Really? I would NEVER have told you that because that would be a LIE! He asked me what did I go to the hospital for and I told him I was having trouble breathing and that the pain in my right arm was excruciating so they thought I had another P.E. which thank God I didn't HOWEVER, my D-dimer test was high. He then said "Oh, so we should do an X-ray of your shoulder then since you're having numbness and tingling. HUH??? I never said I had numbness and tingling! I told him, I am NOT having numbness and tingling, just sheer unrelenting pain! Sharp deep pain that's completely debilitating. I asked him (Does an X-ray show muscles and tendons?) He said no. So I said "Then what's the point of the X-ray? Obviously I don't have broken bones. I didn't injure myself.....so we should probably consider an MRI or ultrasound to look at the tissue and muscle etc. right?" He said "Oh yeah...that's what I meant, we should do an MRI to check the muscles and tendons because this seems like an orthopedic thing you've got going on here." UGH! Why does it seem like he got his MD from a cereal box???? I just wish that I had a Doctor who actually gave a crap about me! One who was concerned and wanted to help me to get better. Partner with me and my other specialists to HELP ME! I can't do this all by myself! Why can I not get an appointment with my doctor when I have an emergency? This is rediculous! I guarantee you that he is the sole reason I am having issue with Social Security too! He's probably told them that I compete in triathalons and decathalons and stuff! It's like he has NO IDEA who I am! I told him I need a referral for the pulmonologist and the MRI for my shoulder. He said I'd have it to pick up on Tuesday. We shall see huh? I will be calling the site manager of the clinic Mrs. Clark and arranging an appt. to meet with her because she was supposed to have changed my G.P. way back when I had my P.E. and he screwed up on my blood thinners and results of my PT INR. I need answers!
~Heidi

Basic "forget about it's"

I am now at the point where regular, run of the mill activities such as folding laundry, pushing a grocery cart, combing or washing my hair or cooking is almost impossible. THE PAIN IN MY SHOULDER IS SO HORRIFIC I LITERALLY WOULDN'T MIND HACKING IT OFF! I wish I knew why it was so bad. I have been on immunosupressants and anti-inflammatories far too long to allow for this kind of breakthrough pain. I've iced it for two days now and NOTHING!!! Not to mention the added 40mg a day in prednisone for 5 days after my release from the hospital just over a week ago. That alone should have at least taken the proverbial "edge off" of the pain. But no. I can't do AYTHING! I am right handed...this is completely debilitating! What else is there? Now, I'm noticing that deep right hip pain is returning and causing problems with my ability to sit, stand and walk. God just let them find the cure for this please!!!

A whole new level of activity.

I went to the E.R. a few days ago because as I walked into Walmart to buy some thread, I became short of breath and had an almost panicked feeling that each breath would be the last. The air was thick, my chest heavy and I began to get dizzy. I left Walmart and sat in my car for a few before taking myself to the E.R. when I felt it was safe to do so. When being evaluated by the ER dept triage nurse, he asked if  had any other pain at which point I realized YES...yes I do. I had pain in the left side of my chest a few days earlier and had been having severe pain in my right shoulder for three days straight which was now unbearable. Well, this being the Hospital that admitted me with my P.E. a year ago June, they were taking no chances and he said "I'm really concerned that you may have another clot my dear." So they took me straight back, inserted a slurpee straw sized I.V. into my arm and took my blood for a D-dimer test. Then it was off to the CT machine for me. In a nutshell, they found no clots in my lungs (Thank you God!) but, my D-dimer came back elevated .

D-dimer concentration may be determined by a blood test to help diagnose thrombosis. Since its introduction in the 1990s, it has become an important test performed in patients suspected of thrombotic disorders. While a negative result practically rules out thrombosis, a positive result can indicate thrombosis but does not rule out other potential causes. Its main use, therefore, is to exclude thromboembolic disease where the probability is low. In addition, it is used in the diagnosis of the blood disorder disseminated intravascular coagulation.^[1]

D-dimers are not normally present in human blood plasma, except when the coagulation system has been activated, for instance because of the presence of thrombosis or disseminated intravascular coagulation. The D-dimer assay depends on the binding of a monoclonal antibody to a particular epitope on the D-dimer fragment.

In short, the ER doc said that he'd almost put money on me having "that clotting condition" that Lupus Patients often develope. GREAT! My rheumy tested me for APS and I was negative! But is that th same thing?

They gave me a horses dose of steroid injection, a breathing treatment, a shot of dilaudid for my shoulder pain and that was that. They sent me home with a prescription of 5 days taper of prednisone and Oxycodone so I may sleep. Yeah right!  Well, if my shoulder pain had been related to my inflammatory condition whatsoever, the steroids or the many anti-inflammatory drugs I am on (Imuran, Plaquenil etc) would have knocked out the pain and helped me function. BUT...I have no use of my arm at all. It hurts so bad you can't even touch it! Now, here I sit at 1:00 am unable to sleep with a fever of 99.4 degrees. My breathing is still not good though my oxygen sat showed normal (which I totally don't understand) and now I'm running a fever? Hmmm....Autoimmune fever should've been knocked out by the prednisone as well. IDK. But I've got a real bad feeling about this. I'm at the mercy of the doctors and that terrifies me!

Imuran is not working but damaging my liver I guess.....

So, I guess soon enough it will be back to the drawing board. I received my lab results today from my July 5th draw and once again (Just like with the Methotrexate,) my ALT (SGPT) or "liver enzymes" are HIGH, Billirubin is lowest side of range and SGOT is highest side of range. When discussing the next step with my rheumy last, he said the next would be Cytoxin infusions. Nice :(  So, I have to call him tomorrow morning to get a stat lab for re-check and discuss future plans I guess. I was already increased due to ineffectiveness, and now i'm in excrutiating pain all over...(back, hips, tail bone, collar bone, shoulders, neck, head, hands, feet) and I can't sleep! In short, I feel like i've been hit by a Mac truck.  Not happy. Tired of trial and error all the time. Oh...and today is my birthday......yippeee :'(

~Heidi

Lab results for DJ (I'm quite worried at this point)

SO, we got DJ's lab results back today. I would be lying if I said I wasn't worried. So last visit, we learned that he was anemic. Now re-tested for the anemia, he is borderline. Here are the new findings that are out of range.
Potassium - ref range 3.8 to 5.1  (He is LOW at 3.6)
CH Compliment Total 50 (marker of inflammation) (He is HIGH at 60)
Cholesterol Total - ref range 125-170 (He is High at 173)
Triglycerides - ref range 30-104 (He is very high at 136)
Hematocrit - ref range 35-45 (He is low at 34.4)

His doctor feels it is imperative that he be seen by a Gastroenterologist ASAP. Her suspicion is a G.I. condition of autoimmune origin. She sent the referral for authorization today. My worry comes from a place I didn't even understand until the puzzle (that is Lupus) began to fit together for me after watching Momma suffer with it. Anemia is a common condition amongst Lupus patients, as is an elevated CH Compliment (inflammatory condition) as is elevated triglycerides (in Lupus Nephritis patients) aa is low Potassium. Let's not forget the nausea and weight gain. DJ cannot smell food cooking (or very fragrant cooked food) without throwing up most of the time. He has been tiring easily, and he put on another 3lbs since last visit (2 weeks ago) to the doctor. He was already 24 lbs overweight, he is now almost 28 lbs over. He should weigh around 50 lbs. for his age and height. He is 77 lbs.
Something struck me yesterday, my best friend saw my son running around one day and did not recognize him. She thought "who is that chubby kid?" then noticed it was my son. She said (Oh my God Heidi, he looks swollen!) Then, yesterday (only a few weeks later,) she came over and said "Wow! He looks good today! He looks normal. Not all swollen up everywhere in his face.)
OH MY GOD! Are you kidding me? That is one of my main symptoms is my face swelling up all over. I never noticed it cause I see him every day. My poor baby. We gotta get to the bottom of this ASAP!

Post Neurology appt.

I am back from my Neuro appt. and from what I am being told, the white spots in my brain are most likely, Lupus Plaques. I do not present with the MRI of a person with MS, She said that many CNS (Central nervous system) Lupus patients do develope MS after a passage of time. This may mean that I have developed CNS Lupus now. I have already been dignosed with Systemic Lupus Eurythmatosis so this would be new.
I received a new prescription for Gabapentin or (Neurontin) now due to my tremors and involuntary jerking I experience with relaxing. It is also a mood stabilizer so that's a plus for me and the kids :) I am also being scheduled for an Eeg within the next few days to monitor for seizures. My vitamin D is low and my B12 is not where it should be so I may have an absorbtion issue. Both vitamins were increased but I will be taking the B12 as a sublingual suppliment now. Anyhoo...that's it for now, I will let you know if anything new comes up.
Gentle Hugs!
~Heidi

Never really works out......

I'm back, I went to my G.I. appt the other day only to be rejected because I needed a (prior auth or referral) from my General Practitioner.  My rheumatologists office told me that they called and checked and I did not need one for this. I had the appt. because I was in the E.R. with serious stomach pain and reflux issues. Prior knowledge says that I had peptic ulcers and Barrett's Esophagus (which is a pre-cancerous condition) brought on by prolonged untreated G.E.R.D. I have also had this burning spot in my gut that has been there for years. I describe it as someone slowly twisting a white hot poker through my abdomen back and forth. It's truly painful. I am nervous, and have been, because nobody has ever found the source of this pain. (Nobody has ever REALLY taken the time to look for it) is more like it. It is so precise that I can literally draw a circle around the pain with a pen! You would think that would be a good lead! So, in the E.R. they tell me that I need to get in to see my G.I. doctor ASAP because I have bleeding duodenal ulcers (that's new) and they could have been caused by my meds and made worse by stress. No big suprise there... I told my rheumatologist this at my appt with him a few days later and he stressed the importance of that appt. I reminded him how difficult it is to get a referral from my primary and he said WE WILL GO ABOVE HIM AND WRITE THE REFERRAL! I stood there as they called and they turned around and said that they were told I didn't need one for this. COOL! So I show up and get rejected. The assistant at the G.I.'s office was MAD! She called my primary and told them it was an emergency and that I had actively bleeding ulcers and was ordered to this appointment by the E.R. and they still said I'd have to make an appt. to see my primary (which had no available appts until August) and then he would write the referral and send it to the referrals dept for processing (which takes anywhere from two to six months!!) By then I could be DEAD! Are you kidding me?? Here's where I truly see that the medical clinics are in it for the MONEY! He wants his money for the referral, he's not concerned about my health and well being. Sorry about the venting....I'm just seriously frustrated about this!
ANYWAY......today is my Neurology appt to find out what the "white spots" on my brain MRI mean for me going forward and learn what the next step is. I don't know if I will come away from this with a diagnosis or not, we shall see. All I know is that Neurologists like to do lumbar punctures (spinals) and she is getting NO WHERE NEAR MY SPINE! Not unless she can knock me out first. Two things I have trouble with in this whole battle (Lumbar pokes and blood gasses) NOT HAPPENING! So wish me luck today. OH, I need to try and remember to tell her about my slurred speech yesterday! A lady down the hall from me heard it and she just lost her grand daughter to Lupus. She said, her grand daughter also had that problem from time to time, It goes along with the brain fog they talk about but it's really caused by the meds. HOPEFULLY that's all. Peace, love and Gentle Hugs!
~Heidi