Thursday, October 28, 2010

Feeling Very Blessed

Today was my follow up with Dr. Dobrin I have seen her several times since August, but today was really pivotal in how I really felt about having a Primary Care doctor. Up until just before I won my disability, I hadn't had a primary doc, I had PPO insurance and enough specialists to make up for not having one, I had a specialist for just about everything one could imagine, and I really didn't need someone to coordinate my care, my brain worked well enough to organize it.

When I applied for disability I needed a primary doctor because I thought I was going to wind up on SSI not SSD, which would have given me Medicaid that was an HMO plan, not Medicare and Straight Medicaid, like I do have, so my previous PCP did next to nothing for me, and when I say next to nothing, I mean, he basically did what I asked him to or what my other doctors requested him to do, NOTHING proactive or that required HIM to make a medical decision affecting my care WHATSOEVER.

So when I got sick in August, we decided we were going to a different hospital. My Neurologist had given up, my pulmonologist had all but given up, and I was left to suffer alone. So off to Beaumont Chris and I went. We knew right away it was the right choice, the hospital staff took great care of me, didn't question me and wanted me to see THEIR docs, I got a neurology referral, and when my sugars went wacky I was referred to a new endocrinologist (who also wasn't doing her job). When I got out they wanted me to go see a primary care doc, I wasn't going back to my doc, he had already failed me, so my nurse whom I ever so lovingly cried on for over an hour the day before told me to call and how to get a new primary doc with them, I prayed, God knew I needed a doc that was MEANT for me…I have LOTS of doctors, I absolutely LOVED the Neurologist I was given, and when I called the referral service they asked my insurance and I told them what I had, asked where I wanted to go, There are NO Beaumont docs where I live, so I mentioned my Neurologist was on Rochester Road, That's ALL I said… So she gave me this LONG name, its Hyphenated, lol, of Dr. Dobrin (they don't use her WHOLE name, it doesn't fit on her card, lol) and I called and made the appointment, The first appointment took over 3 hours, she was so thorough, I wasn't sure I liked her then…she kinda scared me, it was extreme to extreme.

I saw her again, a few weeks later, she reran the blood work, and checked other things, same routine, but shorter appointment, still very thorough, a month later, same routine, shorter appointment, still NO WAIT, but very thorough, this is growing on me, office staff friendly, very efficient…Then Today…hmm, I have had 2 referral appointments and a follow up appointment since I saw her last…so we went over those, All in all, she spent an HOUR with me BEFORE deciding what to do with me.

We re-evaluated some chest/shoulder pain, she thinks it MIGHT be musculoskeletal, so we are going to attempt Physical therapy, We went over my bloodwork, she can't figure out what is up with my liver, she is calling it fatty liver disease, but she is going to assume its just its normal (its not, because it wasn't there in February, but eh whatever, my body has a way about creating new normals when it gets bored)

We discussed the bariatric surgery… she is not pushing me as hard since I was OPEN and Honest about my thoughts, long story short I am just NOT SURE, she said to call her when I am sure, IF I am sure. Then we talked about the Fibromyalgia, Pain, and Neuro stuff…she doesn't like how complicated I am, but is still not giving up on me…she says I need a miracle.

Tuesday, October 26, 2010

And A New Doc is Met…Hmm? Not sure what I think yet

Today I met Dr. Mardelli, the new Pulmonologist who will be dealing with my sleep apnea, I am not sure if he will be dealing with ALL of my issues or referring me to another pulmonologist or cardiologist or someone else yet or not, follow up will be determined AFTER my new sleep study on November 9th. However he was VERY quiet, he Listened, A LOT, he didn't ask many questions, I am not sure if that's a good thing or a bad thing. I know I know a lot of what I am going through and am familiar with the processes, so it was rather strange for him to not ask hardly any questions at all.

He basically went over my meds, my CPAP info, where he got REALLY confused, I have a fixed machine that has been reset several times trying to find an IDEAL pressure setting after an initial titration, (my initial sleep study set me to 19, which the office overruled because it would have shocked my body who was not used to CPAP) I was started at a 12, with a ramp of 6, which I learned to forego really fast cause that was so easy to deal with, then I was bumped up to 17, then down to 7 then up to 19 now down to 14 cause 19 was literally blowing the mask off my face.

I am hoping either they find I need Oxygen so I can get some extra help with breathing so I am not hurting all the time, or he refers me to a cardiologist so we can find out why I am in pain and having this hard of a time ALL the time, I should not be out of breath walking to the bathroom… but we will see. Wait and See. There is always the possibility that they will refer to a regular pulmonologist for continued care as well…but I don't know, and him for the sleep follow ups, which I have NO clue how often they will have me follow up now, I have been followed every 3-6 months for the last 2 years, so this change could be HUGE…Here is hoping.

Tomorrow I am going in for Bloodwork, Its for my endocrinologist, I am having a lot drawn but it's all pretty basic, hoping that when it's done they will find that my kidneys are functioning fine, liver is back to normal (I think he is doing a different liver test) and we shall see where my cholesterol numbers are, they haven't been tested in Uhm, I don't even remember when.

Then I have to see Dr. Dobrin on Thursday Hoping she has nothing but positive for me.

Sunday, October 24, 2010

It’s all connected, I always knew it…

I saw the podiatrist again on Friday, my life is so full of doctors I don't even know if I am coming or going half the time.

This week I have two appointments, then next week I start the list with a bunch more, November will be fun.

Anyhow, I was diagnosed with High Arches, Heel Spurs, and Probable Tarsal Tunnel about a month ago, not a huge deal, or so I thought. I already have Carpal Tunnel, so Tarsal Tunnel is just the Ankle version…except I get the privilege of actually getting an EMG to rule it out this time, yay…probably cause I have so many other things going on.

Well I was looking up "what high arches do" because he changed my arch support from last time to this time (last time I literally lost the shoes the MOMENT I walked in the house EVERY time I walked in) These ones aren't AS bad, but my back was KILLING me all day today since we had to go shopping, and my Headaches were a lot worse, I actually felt like if I could I would need a BODY transplant, my whole body hurts…now, I am not blaming this on the Arch supports, but it led me to want to know what my FEET had to do with all my pain…which was far worse than I am used to today. High Arches, the kind that are Abnormally high like mine, lol, are associated with, lol, of course more frequent injuries, that does explain the 20+ sprains, strains and TWO fractures in 22 years (mind you I didn't start spraining til I was 12, so I had to subtract the first 12 years) BUT, and here is the good part, High Arches are also associated with Neurological Problems…Hmm, I have Intracranial Hypertension (neurological) Chiari malformation (my brain doesn't fit in my head, DEFINITELY neurological) and Sleep Apnea, (pulmonary/neurological since part of it is because my brain forgets to BREATHE)

Hmm, I think I just may have some neurological problems. That about did me in, a health problem that wasn't really a problem, I have had all my life, is associated with neurological deficits.

Then after I got home and got all comfy, my gynecologist office calls, we are waiting on some decisions based on well Aunt Flo, since my endometrial biopsy wasn't conclusive, she offered a D&C with Hysteroscopy, ugg, I will have to wait and see based on IF, I have a period in October, or November, so far, October is a No show, the cramps came, but the visitor, she didn't.

Saturday, October 9, 2010

Rollercoaster ride

What a day it has been…at least I got to see good news today, a good friend of mine with IH has been on Octreotide for the last 3 weeks in Texas, and is seeing progress, for the first time in 11 years her pressures are finally normal. God is Good ALL the time, Brooke is one of the biggest blessings I have had since I have been on Facebook and Intracranial Hypertension is how we met, I wouldn't trade IH for meeting this wonderful woman for anything, she has become one of my closest friends online. I have others, my "peapod" and a few other special friends I have met as well, but Brooke was the first one I became really close to and seeing her finally having success is just HUGE.

As for ME…well, This has been A week…I slept through last weekend, I honestly don't remember it, then I slept through most of Monday too, I got up for my nurse, but apparently she wasn't coming til Tuesday, oops. She came on Tuesday, then my pain was REALLY bad, so she called my neuro, but I still don't have pain meds so I don't know what's going on with that, not overly concerned though. Wednesday insomnia took over, I felt like crap and haven't improved. Friday I saw the dermatologist I was Really nervous going in, I had No clue what to expect. I have to admit I was scared out of my wits because I didn't want them looking for anything I didn't show willingly, I have a history of blistering sunburn, but I was more concerned about this scab that wont heal and this mole that kept bleeding (since I was there I figured I would take advantage of the appointment) I wasn't thrilled to be sent anyhow, he looked at the legs, figures since they are old, they will heal eventually, but because they keep getting irritated its taking forever. The ones on my breast though, he felt that's taking so long because they are getting rubbed so he prescribed a special antibiotic ointment called Bactroban and put some on it in the office, I checked it a few hours ago and they are already clearing up, that must be some pretty powerful stuff, lol. The mole, it was at my hairline and kept getting caught in the hairbrush, comb, and when I washed my hair, he took it cause it was JUST shy of where they would normally take a mole off anyhow and it kept bleeding. I was kind of nervous about that part, but to be quite honest, I think it hurts worst to take my sugar, I didn't feel the novacaine shot and I certainly didn't feel him sterilize it or remove it, but it was done too quickly to question it, probably 2 minutes tops.

If the skin isn't clear in 3 weeks I have to schedule a follow up, if the biopsy on the mole shows anything they will call, if not, I am all clear.

Then, I am good til the 22nd when I see the Podiatrist again, 25th when I see the New Pulmonologist, and 28th when I see the Primary care, although somewhere in there I need to squeeze in lab work for the Endocrinologist that I see the first week in November.

My head is not playing nice many days, I am stressed out about the bariatric surgery, I have to schedule the Psych eval, I think I have to call Medicare and see what they suggest, because I really REALLY need to talk to someone about how I feel, I don't need to go into this without SERIOSLY talking to someone for a while about this.