Saturday, August 28, 2010

It Pays to be Honest

After a rough day of shopping and not being able to complete my list, I got home to discover that the cashier had not rung up my New necessity, Lovely, I had two choices.

We do almost all of our shopping at the local Meijer store, I love their prices and get fantastic deals every time I go in, I used to work for Meijer before Lauren was born (and until she was a year old), so it seems appropriate that I continue to give them a lot of business, I know how the stores work and know what to expect when I shop…

The difference is I get my scripts at Kroger because before I had insurance, they had the $4 plan and I got used to taking care of that there.

My Endocrinology appointment this past Tuesday gifted me with a wonderful chore I am not sure if that is sarcastic or not, it is definitely something that should have been done all along, and I am truly blessed by these new docs.

He gave me a FreeStyle Freedom Lite, blood glucose monitor and officially changed my diagnosis from "pre-diabetes" to type 2 diabetes because my numbers were actually too high and my neuropathy and vision issues qualify me for the diagnosis L Anyhow, my WHOLE sugars are staying in check, but he is guessing its cause I have been on meds for 7 months already, which is PERFECTLY fine by me, they are NOT where he has already made it CLEAR he wants them all the time.

Anyhow how the point of my post, hehe, I had to FINISH my list at Meijer today, I was too tired and worn out yesterday, and when I got home I realized that they did not ring my test strips and lancets (which Medicare only pays for there and Rite Aid (which we will NOT give business to) but in my trying to figure them out, I did not realize they were also Expired, and for the WRONG machine, so I called the manufacturer to ask about it, I was looking all over for an expiration date (turns out the LOT Number IS the expiration date, so I will know for next time…and Abbott is sending me a New box, but, for being honest and PAYING for them at Meijer today anyhow, I got a $5 discount on the rest of my groceries, see it pays to be honest. I could have very easily decided that I didn't want to pay that $17 something or not looked over my receipt, it wouldn't have been hard to miss, I had almost two carts of groceries and other merchandise stocking up for the month. But I did, and I did notice, and we made it right, and you know what, it felt good.

We have a $100 purchase to be made elsewhere plus a new shower head to handicap my bathroom, and its emotional, but I feel knowing that I set a good example for my Lauren to see honesty in action will make an impact when she sees us struggle with this disability on a routine basis. God has been amazing, Right now we have Jobs to look at that for the first time in MONTHS we are finally seeing field jobs that are local, God has provided doctors that are willing to help me instead of being scared of me, and while, it's a work in progress, I am HAPPY with how its moving, my pain levels are all over the place, but I am HAPPY, God is SO good….

Friday, August 27, 2010

Romans 8:28 Literally

And we know that ALL things work together for good to them that Love God, to them who are the called according to his purpose.

This was the very first verse of scripture I memorized as a child, I was no more than 7 years old and probably closer to 6, little did I know the impact it was going to have on my life, some 28 year later.

This month is nearly over, just a few more days, and the whirlwind that was August will have passed. August has been kind of a blur to me. This year has been VERY rough, but August has been very special, I have always had a bit of fear about facing my health issues, ok, I know I have two rare diseases, I have one NOT so rare complication of the two and I have one NORMAL disease…my overall health up til 2008 was relatively stable, Ok, 2003 but I lived in denial for a LONG time, and I admitted it in 2007/2008, ANYHOW.

Last year, my spinal taps did not give me ANY relief, but I was not drained down lower than 16-18cm of pressure (for non IHers, think in terms of Blood Pressure except its spinal pressure, Normal ranges from 10-20, but my body out produces and the lower they drain the longer I have before I need another, not only that, but the longer my head gets good relief, but some get low pressure headaches, I have NEVER experienced Low pressure.)


On to this August, On the 10th, I had to be taken to the ER due to not being able to handle the pan, Chris called his mom, she did not return the o=fall for two days. So, he called hi dad, and they took Lauren, but that changed hospitals.

By Chanaging Hospitals, I got many new docs, Dr. Rossi, (neuro) Dr. Dobrin (pcp) Dr. Masters (gyn) Dr. Simone (optho) and Dr. Al-Kassab, endocrinology. SO far out of the docs I have met, I am VERY impressed with ALL of them. I have 2 to go.


I had my stress test Tuesday, endo, Wed, Dr Rossi, Thurs,

Friday, August 20, 2010

Changes on the Horizon

After many months of pain, suffering, and med changes with little or no success, and often negative results the neurologist I was so thrilled to find almost 2 years ago gave up on me and referred me to Michigan Head and Neck Institute, I looked at this as a mixed blessing til Tuesday and Wednesday of this week, you see, MHNI is supposedly one of the top headache places in the Nation, however they use a lot of coping techniques, and protocol meds that I am already on, so we were not 100% confident in their ability to help when we were being sent (after all 21 years of a headache, I think I do a pretty good job of coping MOST of the time, until lately I did normal tasks, since February it's just been kicking my butt way more than I like, hopefully the new meds the new docs are trying will help (I am getting there)

Last Tuesday (August 10, 2010) I finally had enough, I had emailed my neuro and left messages because MHNI was not going to be getting me in til November 8,2010 and I was going to run out of meds if he didn't refill or see me again (he had been seeing every 2 months) and he stopped returning calls, but the last straw was when I got stuck in the bathtub, neither leg would lift me out and Chris had to help me out, walk me with my cane out to the living room and help me cool down. The shower didn't help the pain and I was feeling worse than before. We called family to watch Lauren, and decided to head to the ER. Once there (we decided on a different hospital than usual because after praying we decided we didn't want to be sent back to the same docs who were doing NOTHING for me) God REALLY used this decision in an AMAZING way.

Within less than 30 minutes of arriving in the ER I had an IV in and pain meds going, even after the two tries to get the line started. The ER doc had decided before giving me pain meds she was admitting for a minimum of Observation overnight, to be seen by THEIR neurologists, What a blessing that turned out to be…

In the hospital I got pain meds around the clock that did almost nothing for the first 24 hours, then I got a WONDERFUL spinal tap, We don't know how high my pressure was, but the radiologist said I would have broken the manometer so I trust it was WAY too high, a dear dear friend had been scolding me for putting it off for MONTHS, she was so right…sorry Brooke.

Anyhow, after my tap, I did not get immediate relief (and after my last tap they didn't drain me far enough so I got NO relief, this time he drained A LOT of fluid) so while it took about an hour to kick in, I got my pain down to a 6 (it had been literally about a 30+ so a 6 felt like heaven, I had not felt a 6 in years, probably before Lauren was born.

At my last appointment with Dr. Turner he had asked if I thought I could have Fibromyalgia (he had a medical student or resident who did a FULL neuro exam) and I didn't know (not my job to research, even though I know the symptoms coincide with Chiari A LOT), when I was in the hospital the hospitalist and ER doc asked the same question, I actually told the Hospitalist that I didn't go to medical school to self diagnose myself, I was in a crabby mood when she asked, Pain meds weren't cutting it and she had just poked me all over…I don't like docs poking me especially when it HURTS. But hey she was doing her job and that's where the changes come in.

Dr. Rossi, the new neuro met with me, she thinks there may be something with my neck, if it's my Chiari, she will know, we have decided to manage it medically for now and possibly see if physical therapy will help as well. I saw her in the hospital, they wanted me to follow up with my primary doc, but he always said "its not my job" and reminded me of the story "Everybody said that Anybody could do all the good things that NOBODY did" because My 3 main docs were named EVERYBODY, ANYBODY, and NOBODY. I switched PCPs, Dr. Dobrin I met today, and is the Furthest from Dr. Butlers it's not my job. We went over my history, and what I considered Heartburn she considered chest pain and ordered an EKG and Chest X-ray, she ordered a ton of Blood Work and a Urinalysis. Uhm, overall I was there 3 hours…she checked me HEAD to toe, Literally, and because of my pain at ALL trigger points, said fibro isn't a question, it is definite. Then she went on to CHEW ME OUT, lol for not seeing an Eye doctor (which was well deserved with IH I am supposed to see them annually or more often, and I am OH 10 months overdue) she gave me a referral, and it was so funny, I was checking is ratings on and a friend rated him. Then she gave me a referral to the Ob/Gyn in her office L because she is concerned my VERY Heavy Periods could be caused from fibroids or something else. Either way, she doesn't want me risking getting pregnant, so that's another doc to see. So while I got a New Endo because of my blood sugars not being controlled while in the hospital, a New Neuro because mine basically quit on me (and MHNI quit before they started, they called and told me I was too complicated for them) a new PCP, a New Ob/Gyn, a new Ophthalmologist…ahh sigh, I have lots going on, and she didn't look defeated or even scared off, just prepared for a challenge and glad that Dr. Rossi would be handing MOST of my medical care, lol, after all 90% of my medical is Neuro anyhow, but they are all in the same office with the same chart, so if I get NORMAL sick, I don't need to let someone else know about it.

Thursday, August 12, 2010

From my Hospital Bed

On Tuesday I gave up. I had every intention of going to the DMC but God had other plans… and now I know why.

We called Chris's parents to watch Lauren, first his mom since she is closer to Detroit, but no answer, and no return call, since she NEVER gets to see Lauren we figured this would be the perfect time, but alas, she didn't want to see her this time either, so…where is Lauren? with Chris's Dad most of the days when Chris comes to see me and the first night.

There was No Wait to get a room in the ER, I was very weak and tired, and rated a 3 out of 5 for priority, so right in the middle, The doc that examined me immediately asked permission to admit overnight for observation due to the slew of strange symptoms.

So, I thought that was that, I would meet her Idea of a Neurologist and be sent home on Wednesday, HA HA.

I had my CT in the ER, but that was about all they did. I had to wait til Wednesday fir my spinal tap, to meet the neuro just about everything.

So they take me up to a room on the 5th floor, Medical/Surgical. And here I sit, getting morphine every 2 hours 4ml at a time, and 8ml of Zofran every 8 hours.

The Vampires are here…be back in a few to finish the post.they had to finger draw my blood, but I spilled my meds everywhere. Ahh, meds replaced, breakfast in, praying it stays that way.


Wednesday morning I get this horrible nurse who is trying to withhold pain and nausea meds, it was so bad I did not ask for my meds from 4:30-she went home. I had an LP done first thing Wednesday in interventional radiology he did awesome although ], we have no clue what my pressure was the fluid flowed like a faucet. He went above all of my scar tissue and poked twice, I felt nothing except the fluid draining.

Today they are ready discharge me, but and that's a big but, my pain, must be managed first, the hospitalist wants to stop my Morphine and not replace my iv if it does decide to kick the bucket.

Physical Therapy Evaluation today I better catch a nap




Sunday, August 1, 2010

It’s been FOREVER

Okay, I know it has been forever since I last blogged, I don't even remember my last post and my brain isn't working well enough to go look, so this may seem a little redundant, especially to my facebook readers.

Things have been really hard this summer. In late May my neurologist put me on 100mg of Verapamil a Blood Pressure medicine commonly used for headaches, we figured since my blood pressure runs high normal but normal nonetheless it wouldn't hurt, HA!!! Well, it didn't react discovered my arms and legs tingle and hurt ALL the time, and when I say ALL I mean ALL the time. I used to just have bad pain on my left side but now my right side hurts like crazy too, so my whole body hurts all over all the time.

I saw my pulmonologist in June, my Primary care in June, and I was pretty close to fine for both of those appointments. In July however, I started having this weird issue, when my Pain levels went up my lips and mouth turn purplish blue, both when I am awake and asleep. Well, I had JUST seen my docs and had an appointment scheduled to have a stress test done, so I figured I would discuss it with the cardiologist, on July 16th, low and behold I just saw the nurses, and man was that fun, they made me to the treadmill test even though it was pain that got my heart rate up, I have to call Sara on Monday to see if she has gotten the results from that faxed in yet. She is at the bariatric surgeons office.

On July 22nd I saw my neurologist, I figured he was going to schedule a spinal tap because of the immense pain I had been in but nope, he is sending me to Michigan Head and neurological Institute in Ann Arbor, I can't get in there til November, but by golly I will likely end up hospitalized for 2 weeks to see if they can get my pain under control, it almost sounds laughable at this point.

Chris is still unemployed, looking locally and out of state. He will likely be going to finish his degree at a state school somewhere outside of Michigan in Accounting, I am excited, he will finish his associate degree in December unless he gets a job in which case he will finish in May, 4 classes is too much for a working man to take all at once if he gets a full time job, especially here, these teachers forget they are not teaching at a university and expect you to put in close to 40 hours a week on assignments, so he needs to do well so he will be only taking two if he gets a job.

I see my respiratory therapist and endocrinologist on Wednesday and will ask them about the blue lips then. Until then tomorrow we start our new school year and I am already worn out, We are studying State History all 50 states, for History and Geography and some Science, Science is Nature studies based on the location we are studying. Math we are doing Multiplication facts, 4 digit addition and subtraction, as well as fractions and some other concepts we will be expanding Math quite a bit. Handwriting, we are doing Pen Pals with a friend of mine with IH's daughter as well as copy work. Grammar we are going to be learning about Nouns, verbs, pronouns and sentence structure. We will also focus on how to write punctuate.