Misery and Mirth

Toronto

Ok so how was my Canada trip?(7/13 - 7/17) Well it was an adventure. Jon met, No exceeded my expectations for being an offensive, thoughtless, self centered, creepy schitzo. 
Despite him I still had some enjoyable moments with Rob. The RUSH Convention was rather lame and boring for me since I am not a RUSH fanatic and barley know anything about them, even Rob was a little disappointed he said the 2004 convention he attended was a whole lot better.

We did some site seeing. We all went up in the CN tower Friday afternoon. We got to look out over the city & take a few pics. Was kind of cool but rather anticlimactic to pay $23 a person and spend 90% of the time in line for the elevator. We had dinner at the Hard rock café overlooking the Rogers Center where the Toronto Blue Jays play.

Saturday we went to Eaton Center a huge mega mall and a few shops along that street. We had dinner at the Food court I got Sushi, Rob had Sbarros’s Pizza and Jon had a Harvey’s cheeseburger. I was amazed how huge food court was and it had food from almost every ethnicity.
Sunday Rob and I went to Casa Loma, a Castle which was part of the former estate of Sir Henry Pellatt, a prominent Toronto financier, industrialist and military man. We had planned on visiting one more site that day but there was some kind of accident on the subway so we were lucky to just make it back to the Hotel before they shut down all the trains for a while. But I was happy I really was exhausted and in pain and didn’t want to do anymore. I felt bad because Rob wanted to see a lot more and I did to but my body just gives out so quickly. We ordered in Pizza for dinner.

Monday morning we checked out of the Marriot and rode with Jon to other side of Toronto to the hotel holding his conference. Then Jon let Rob and I borrow the car for half a day to visit the Pacific Mall-North America’s largest indoor Asian mall.4:30 we headed out of Toronto back toward Michigan. Around 6:30 we stopped in London, Ontario again because Jon had left his soap dish at the Howard Johnson and wanted to see if they still had it. We also needed to get gas and some dinner. Then back on the road and back in Michigan by 9pm, picked up Robs car from Jon’s apartment and loaded our stuff in went to Rob’s home

For more nitty gritty details you can read on otherwise the above summary gives the jist of the adventure.

Continued...

Neurologist Visit & My Crazy Brain

Monday I saw my neurologist, Dr.Begum to discuss the results of my MRI brain scan and have a recheck. I was quite shocked at what she revealed to me. She showed a few small spots on my scans that were most likley indicative of minor past brain bleeds but also these spots could not be differentiated from those that appear on the brains of people with Multiple sclerosis(MS) so I will have a follow up scan in a year or sooner if i begin to have serious muscle weakenss or paralysis.

Then she showed me how my parotid glands (which are the major salivary glands located within the head on both sides near the ear) appear to be inflammed and full of cysts. This is often seen in people with Sjogens syndrome so i will be sent to an otorhinolaryngologist for a biopsy to test for this. Sjogren’s syndrome is an autoimmune disorder which results in immunologically-mediated destruction and inflammatory enlargement of salivary glands, tear glands, sweat glands, mammary glands and many glands of the digestive system, pretty much any gland that secretes lubricating fluid.

Then she showed me a diagram on her wall of the brain ventricals and compared them that to my scans that showed my brain ventricals had “shrunken”. The ventricals are cavities in the brain that contain a clear, colourless fluid called cerebrospinal fluid which acts as a buffer against damage. But because my ventrical had shrunk and my body is still producing the average amount of cerebrospinal fluid this is creating pressure within my brain and spine. This phemonenon is called Psuedotumor Cerebri. Which explains my migraines, back aches and some of the neurological problems (dizziness, visual disturbances, memory loss, balance etc.) The only way to test how high the pressure is, is by doing a spinal tap- inserting a needle in to the spine attached to a pressure gauge mechanism. Dr. Begum didn’t want to subject me to that YET, so she is sending me to an opthamologist to test my vision field first. Because the excess pressure can damage the optic nerve 1st causing a decrease is the peripheral vision. She said if theres no damange the pressure isn’t bad enough to warrant a spinal tap, but if there is a decrease in vision they will have to do it.

Next she re-tested my nerve sensitivity and noted that I still had reduced sensitiivty in my lower limbs, I don’t know if this could be associated with the Pseudotumor Cerebri or possibly MS. She wouldn’t say one way or the other probably because she doesn’t want to scare me. She has ordered me to have an EMG. Electromyography is a test that assesses the health of the muscles and the nerves controlling the muscles. She did not perform the test on me Monday becasue I have swelled up so bad with edema(water retention) that she said she would not be able to get an accurate result. I have been swelling up like a baloon for a month no. It started the week I was reduced to 5 mg of prednisone and has gotten worse since then. So Dr, Begum put me on a diuretic pill to flush out this water, which is possibly lovley after effect of taking the Prednisone.

She also told me my upper legs where way too big and out of proportion to the rest of me, which she says is a sign I am having lymphatic pooling. Which means not only is water pooling in my body, but lymph fluid is not flowing and cycling properly and pooling in my lower body. So she said she may be sending me to have some kind of therapy that involves placing a device on my thighs that squeezes and relaxes to encourage flow.

Tuesday I treid to set up the appointments with the 2 new specilists that Dr.begum referred me to but neither takes my insurance, so i went through the phone booke trying to find ones that did with no luck, then i called back Dr. Begum, her receptionsit told me to call my insurance. I was told someone who could answer my questions would call me back abotu an hour later they called me back but refused to give me names of any doctors or know any other answer to questions I asked about coverage of IV blood disorder treatments, mental health coverage. So I called Neurologist office back again told them sorry I would liked to take care of it myself but they will not release names of participating doctors to me and said you must request them. I left for Rob’s a few hours later so I am not sure if they called back and left a message with names of doctors for me. 

Today Thursday I have been on the diuretic for few days my feet and legs are still swelling up nasty but I can actually feel a decrease in the pressure in my head. My head doesn’t feel like its trying to explode and the constant throbbing back ache is nearly gone.  In a few hours I will be heading out on my road trip to Toronto, Canada. So before I head out of country I will call home and see if Neurologist office called and if Hematologist office called with Mondays blood results, see if my platelets are holding.  I hope I have a blast in Toronto.

Gastro-Urinary Infection & Sewing

3 days on antibiotics and I my digestive and urinary tract infection is much improved. The abdomen and back pain is minor and transient and I do not have to visit the bathroom so often. I was not so exhausted and wiped out today. The last 3 days I’ve just wanted to sleep and didn’t want to eat or even talk to anyone. But I had to get up to take my pills and Rob would get upset if I ignored him and Melissa has been calling every day to check on me.

Making my dresses has been slow going because I’ve been (more) ill and Mom has not been feeling so well. I would have started sewing today but Mom told me she will do it. She is better at sewing than I am and more familiar with the sewing machine since it’s hers. Yesterday we did get both dresses cut out. Today I got the pants that go with the Chinese style one cut, but not much sewing got done. Mom and Dad spent some well deserved time alone at movies and out to lunch this afternoon. So hopefully all sewing gets done tomorrow or by the latest Monday eve. Monday morning both Mom and I have doctor appointments with different doctors, I need to get blood drawn and prescriptions filled and pack my suitcase for my trip. I’ll be at Robs for 2 days before we head out to Toronto, then when we come back I’ll with him 2 days before I go home so I need to pack lots of cloths. I’m taking 2 of my canes (I have 3 now, if I have to use one might as well use it to accessorize ) and may be borrowing my Godmothers wheel chair just in case.
I may be ill but I can’t stop living. It should be fun.

June & July Updates

Well it’s been almost 2 weeks since I have posted what’s gone on?
June 24th was my MRI & MRA normally a 45 minute drive turned into a 2 hour drive of HELL.  My parents wanted to go with me and a friend who has had few MRI advised that she always needs someone to drive her home afterward because it makes her so dizzy. My appointment was at 5pm, but I was told to come a b it early to fill out forms. We left at 3:30 thinking we’d get there at 4:30 with time to fill out the paperwork.  It was lovely of the receptionist to not inform me when she confirmed my appointment that there was MASSIVE construction, the exits around them were closed and the direction on there website were totally useless. So we had to take back roads got a bit lost and were half an hour late thought we did have a cell phone and I kept calling to let them know we were on out way. I got there lil before 5:30 and was told I had 4 minutes to get on the table or I’d have to reschedule and pay cancel appointment fee. So the receptionist quickly had me sign forms while the tech raced me into the MRI room, telling me the procedure on the way, took my glasses, shoved me into the machine and told me I hope I have time to finish your scans before next appointment arrives.  I’m not normally a claustrophobic person so I thought oh I’ll be fine…Nope once I was closed in I started to hyperventilate & have a panic attack, but I knew if I stopped the scan I’d have to come back so I just tried chanting a mantra in my head to calm myself. When I was done and table withdrawn from the machine some women appeared, not sure if she was nurse or what but she said you’re done, go. She didn’t hand me my glasses or offer me a hand off the table. He I was blind and very dizzy she practically pushed me of the table and out the room.  On my way out I had to fill out more paper work and then the receptionist handed me films of my scan. The look like x-ray films, but are off my brain and cerebral vessels. She said these were my copies and to not let any doctor keep them because I’d have to pay a lot to get new copies. Pretty cool to have scans of my brain. I looked them over but have no clue if there is anything abnormal about them.

The morning of Monday 26th had my routine Complete blood count with Differential blood draw.  (CBC w/diff) Then I went down to visit Rob spend most the week with him.

Tuesday was his 2nd nieces 13th birthday, we were driving round trying to decide where to go shopping to get her a gift (since Rob always waits to last minute) and we saw a jewelry store that was closing. We got her some sterling silver jewelry; a guardian angel necklace and a necklace & earring set that looks like a stylized sun with blue/green color shift stone in the center. Only cost $25 the original cost was around $120. His niece was very pleased with her presents so Rob was happy.
Tuesday was also the day I started my period which for some reason was extremely painful and exceedingly heavy flow. My periods have never been “easy” but I’ve never need to take pain pills as much as I did this past week and I went thru a whole pack of pads on Thursday I had to go buy another pack, ruined 3 pair of undies and even left my mark on Rob’s sheet & mattress. 

Thursday Rob had to work so I spent park of the day with his Mom, then I went out to the store, drove around visited a friend. The walking really tires me out and makes me sore but it helps the swelling in my feet go down. My feet are swelling every day now, its very unpleasant and dammit I can’t wear any of my nice shoes LOL.
Thursday eve was also kind of the 1st major tiff I’ve had with Rob. He left me in the living room, trapped in conversation with his mother, while he went to go play on his computer. I enjoy conversations wit his mother but after 2 hours of trying to excuse myself he is supposed to come get me. So finally I excuse myself to the bathroom and go check what is keeping Rob so occupied. I walk in and see he is talking to someone on yahoo, which I have no problem with I talk to people all the time but he tries to hide it. He clicked off yahoo and then when I asked why he 1st lied saying he wasn’t talking to anyone, but then when I told him I know you lying to me, he fessed up said it was one of his ex-girlfriends from some years ago and tried to hide it from me because he didn’t want me getting upset that he was talking to her. I said I’m not upset you were talking to her I’m pissed you lied to me. I said you can talk to a woman while she is on cam doing obscene things and I’ll be fine but lying to me implies guilt and you were doing something I should be suspicious of. He has apologized profusely and admits he was just being stupid.
Friday I took his 14 yr old niece to the Movies she wanted to see “The Devils Wears Prada” It was a pretty good movie. Afterwards we had an hour or so before we had to get back she said she wanted to go to a coffee shop. So we went to Panera, a coffee house, bakery, deli place. I ordered a Mediterranean veggie sandwich and got us both coffees. It was after I ordered the coffee that she told me her parents don’t let her have it. I asked why because she drips caffeinated pop like crazy and I’ve seen them buy her high sugar ice coffee drinks.  I only at half my sandwich and took rest with me. When we got to Rob’s home his parents, sis, bro in law and 2 nieces there, they were serving hamburgers, Mac n cheese and melon for dinner. So I had some melon and other half of my sandwich, because I knew later that evening I’m probably not be eating so healthy.
That evening Rob and I hung out with Melissa, we had pizza and slurpees, though mine was diet one. We had a good time talking, watching a movie, relaxing, though I might have got food poisoning or something.  At 1st I thought it was just an IBS attack but I wasn’t having the spastic cramps just nausea and lots of diarrhea. Its still going today but now I have a fever, nausea is worse and I’m having cold sweat, pain in abdomen and back. I was probably the only one affected because I am coming off the prednisone and my immune system is still suppressed which makes me much more susceptible to all infections.

Saturday I spent with Melissa she had day off but Rob had to work, we went shopping. She is throwing a 60th birthday party for her Mom and was checking out costs of decorations, favors, etc.  We also checked out few stores in the mall, Bath & body works was having a big sale so she picked up some lotions and stuff and surprised me buy buying me some too.  That evening we were supposed to go pick up Rob at his house once he got home from work. When we got there creepy psycho Jon was there, he invited himself to dinner with us. At dinner he kept going back and forth from insulting Melissa to hitting on her in his weird offensive way.  He’s always rude and insulting Rob and he pretty much left me alone or I was just ignoring him so well I didn’t hear it. I think he has been little more respectful of me lately because I am so ill. After dinner we finally got Jon to leave, 3 of us (Melissa, Rob & I) went to Priscilla’s then stopped by Kinko’s Rob used to work at, Melissa still works for, because Bryce a co-worker/ friend was working and Rob needed to pick up some disk from him. While we were there socializing. Rob was asked to help fix a comp problems and Melissa was using one of computers to check her mail. Guess who walks in? Jon, he just happened to be going to the mall and saw a car that he recognized as Rob’s, so he decided to come stalk us.  Rob had only had that car for 3 days; Jon had only seen it for 1st time that day? He already had memorized what it looked like and probably the plates, Psycho. He wouldn’t leave, was annoying hell out of all of us, and making Melissa feel very uncomfortable. Finally Rob finished up what he was doing and we went to Culver, Rob & Melissa had frozen custard, I had an italian ice like drink. Lucky for us Jon wasn’t hungry and doesn’t like ice cream so he finally went home.

Sunday morning I drove home after unpacking my car and taking some pills I crashed and slept most the day away. This was when nausea got bad, cold sweats, abdomen & back pain started up.

Monday I had my blood drawn, CBC w/ Diff, complete metabolic panel and maybe something else?  For a couple hours in the early evening I was alone, my niece is gone for a week at her aunts, my sister and bro in law went out to friends, my parents went to the movies. I spent most that time crying. Not sure if just stress and extra added infection took me over the top or just that I was alone so wasn’t afraid to let it all out.  I’ve been feeling very depressed and lot of SI thoughts for last couple weeks; they seem to be getting worse.  I’m always more emotional during my periods but my period is over and I still don’t feel any emotional improvement.

Tuesday 4th of July I spent most the day sleeping because I felt so ill, The family had a BBQ and Dad left off a few fireworks but was relatively a boring Independence day.

Wednesday morning I saw my primary care Physician, Dr. Nemeth. She thinks I have a urinary tract infection and am lactose intolerant. She says my symptoms came on to quick to be food poisoning and lasting too long to be stomach flu. That a combination of my IBS and lactose intolerance has set off a revolt in my digestive system so I am to be on a bland diet for a few days to try and calm it down, and put me on antibiotics for the infection.

After my appointment Mom and I went to visit Aral for a few minutes and drop off his mail. Then we went to my hematology appointment with Dr.Winegarden. I was shocked and very upset when I got weighed because I have gained more weight since my visit last month. I was sure I had lost weight because I’ve been eating healthier, walking more, walked every day this past week and had diarrhea for 5 days. What the Hell is going on with my body?! Also my platelets are dropping they went down about 30,000 uL to 136,000 uL (136 x10^3/ uL) since last week thats 4000 uL below normal but still in the “safe” range. If they get below 50,000 uL and I don’t have better insurance they will likely but me back on the nasty harmful Prednisone (corticosteroids pills), but if I get Medicaid I believe that will cover the Rituxan IV transfusions.  Oh and I talked Dr.Winegarden into testing me for Lyme antibodies.. He added it to my next blood draw, even though I told him I was prescribed antibiotics today. I just looked it up and confirmed my concern that antibiotics could affect the test. A “False negative” can results if the Lyme antibody titer test is taken after a course of antibiotics because there may be a decrease in the level of antibodies present. So either he wasn’t thinking or just humoring me and not caring what the results were because it’s not his “area” of expertise or treatment. I should have gone with my gut and made him write the order up for today but now I have started the antibiotics.

Getting my antibiotics today was not easy. When I went to pick them up the pharmacist said the computer system told him my policy had been cancelled. I didn’t have enough money to pay full price for the medicines so he gave me 2 days worth and said to call my insurance to straighten it out. That’s the nice thing about using a small town pharmacy. 
I went home and called the pharmaceutical provider they told me I had been “updated” but my policy was still active. They gave me some instructions on how the pharmacist should input my info into the system and if he still had problems he should call them directly. So tomorrow I’ll go and try to pick up the rest of my pills.

Also tomorrow I need to work on sewing my dress (es). I am going to Toronto with Rob. To a RUSH conference, if you don’t know what RUSH is, it’s a Rock Music group. I’m not a big RUSH fan but Rob begged me to go and a trip to Toronto should be fun. One of the dresses I am sewing is a Chinese style dress because Saturday event is themed.  I could not find a kimono or Chinese dress that fit me AND I could afford.  I’d have to pay over $100. So I found a nice satiny Asian print fabric and pattern for $30.  I also picked up a summer dress pattern, so if I have time I will make a 2nd casual dress.

If Only I Had A Brain

The brain fog is getting really bad lately. I’m forgetting what day it is, where I’ve put stuff, if I just took a pill 1 minute ago. It was so maddening that I’m sitting there looking at the bottle and not remembering if I just opened it and took the pills. No body else at the table was paying attention so they couldn’t confirm if I had or not, thought Mom said she thought I had taken them.  It was just the magnesium/calcium supplement prescribed by the Rheumatologist that I have to take 3 times a day so missing one dose wouldn’t harm me but it was so frustrating that I was on the verge of tears but juts made a joke and tried to laugh it off.  I shouldn’t let myself get riled over something so silly.

If I didn’t pre-type out my blog entries using WORD with its have spell & grammar check I’d have very unintelligible posts. I have a major problem with “dyslexic” typing, I switch letter, spaces and sometimes type the wrong word entirely.  I’ve had this problem since 2000 or so when I first became ill with my “mystery illness” but it’s gotten a lot worse lately. I spend hours trying to get my thoughts out onto the word document before I paste it to my blog. Which makes me think that this has some kind of neurological connection, especially since my lab results from rheumatologist tests came back as “inconclusive” again. Tests show some kind of inflammation but none of the specific antibodies to pinpoint a disease.

I’m taking quite a few supplements now; some prescribed some just recommended by support groups. Also as of today I am off the Prednisone (corticosteroid) which I am happy. I was weaned down to a low dose so the short term side effects were pretty much gone, but long term use can cause bone loss (Osteoporosis), cataracts, Glaucoma, and stress out the liver. Since I’ve been on the 5mg, for last 2 weeks and now that I am off it I am having problems with swelling, especially in my feet. What’s with that?

Supplements seem to be helping.    I am feeling a little bit better. I was getting very scared at how quickly the pain and weakness was increasing and how it was spreading every where. I still have the bone and joint pain, but the hyper sensitivity to touch is not so intense except for a few areas and the muscle weakness has gotten better. I still have intense fatigue. I have general tiredness all day but when I engage in short bursts of activity( like today vacuuming, cleaning, moving stuff in my room)It wipes me out so bad that I couldn’t stand or keep my eyes open so I took a nap.  It’s hard adjusting to this new “life” wanting to do all these chores or task and knowing I can only choose one of two because I won’t be able to do more. I’m not even 30 yet and I feel like I am living in a disabled elderly women’s body, limited physical strength, no endurance and limited cognitive function. I should start collecting weird hats from garage sales; go to the mall yell weird phrases at kids and wave my cane threateningly at them.

Ok so uhhh what’s been going on this week? Monday had usual blood draw at Woodland, platelets are still in the normal range. 

Tuesday I had an appointment at the FIA to file for Medicaid. This social worker was a lot nicer than the last one and very helpful. She said with all my health problems I should approved for Medicaid, In the meantime I got upgrades from county health plan to adult medical program not sure what that means not got the card or the info/benefit pamphlet yet.  Also she asked me why I didn’t apply for financial assistance through FIA, well because ‘I’ve been denied so much that I figured if I just asked for minimum medical they not think I was trying to “milk” the system and I’d more likely get Medicaid which I desperately need.’ She said she think I can get some disability financial assistance too; it won’t be more than a couple hundred a month, but it should help with some of the cost not covered my medical coverage. That is nice since I still have $3000 in medical to pay off. It takes at most two months to find out if you’re approved or denied but the social worked believes I will have a response closer to a month’s time.

Wednesday I can’t remember doing anything of interest; did I do a load of laundry? 
Thursday today cleaned up my “dungeon room”, and a little of the surrounding area of the basement.  Lab results from Dr. Dowd the Rheumatologist came in mail today. I have been trying to make sure I get copies of all tests to keep in my own records, So I can track my condition and if I go to another specialist and yhey haven’t been faxed the info they can review my copies.

Test results:————         Normal range

LDH: 297 High———— 120-260  
Lactic acid dehydrogenase (LDH) is an enzyme that helps produce energy. It is present in almost all of the tissues in the body and becomes elevated in response to cell damage.

SED RATE:  42 High ————           0-20
A high sedimentation rate (sed rate) may indicate inflammation caused by an infection, cancer, an autoimmune disease , certain inflammatory diseases (such as rheumatoid arthritis or polymyalgia rheumatica) or other medical conditions (such as chronic kidney failure, toxemia of pregnancy, or thyroid disease).

25-hydroxy vitamin D: 13 Low————          over 30
Vitamin D deficiency can result from lack of exposure to sunlight, lack of adequate vitamin D in the diet, liver and kidney diseases, malabsorption, and medications such as phenytoin, phenobarbital, and rifampin. Vitamin D deficiency may lead to low blood calcium levels (hypocalcemia), thin or weak bones (osteoporosis and osteomalacia), and high levels of parathyroid hormone (secondary hyperparathyroidism).

C - reactive protein: 0.7 High———— less than 0.5
This blood test measures the amount of C-reactive protein (CRP) produced by your liver when you have inflammation somewhere in your body. Higher-than-normal levels of CRP may indicate inflammation or a bacterial infection, such as rheumatic fever.

Beta 2 Glycoprotein IgM: 18 High ————less than 10
Is a protein that binds to cell walls and is associated with embolism (clotting/strokes) and another marker of Antiphospholipid antibody Syndrome.

Alpha 2 Globulin:1.0 High———— 0.5-0.9  
Alpha-2 globulin. Is a protein called haptoglobin, that binds with hemoglobin, high counts may be a sign of hemoglobin(red blood cell) damage or inflammation. 

I was surprised my vitamin D was low, because I take a “high potency” daily multivitamin/mineral and I get some sun but it could just be from malabsorption since I do have digestive problems.

Tomorrow, Friday I think I’ll be going to Randazzo’s farmers’ market with mom and pick up more fresh veggies and fruit and Saturday I have my MRA & MRI brain scans in Southfield.  I’ m supposed to get either a copy of the scans on CD or films to bring to my Neurologist. I hope I get a CD then I can copy it too. Be kind of cool to own a scan of my brain LOL.

June 12th-18th Week in Review

Warning entry is filled with bitching and ranting. 

9am Monday like our usual routine now Dad drove me to Woodland hospital, Brighton for my weekly CBC blood draw, got poked twice in the hand because they gave me the guy tech again. He is just not good enough to get my rolling veins, so a 2nd female tech drew my blood. Then went to other side of hospital and dropped off paper work at hematologist office for Dr.Winegarden to fill out ( part of paper work to try get Medicaid.) Also got copies of all my tests since April and had copies faxed to neurologist and rheumatologist.

11 am I met my neurologist Dr. Begum. She works out of professional building part of St. Joseph hospital, Howell.  At 1st she was a little intimidating and her accent so thick I had some problems understanding her, but she has a rather good “bed side manner”. I had a long visit with her she performed all kinds of neuro tests on me.  She then ordered a urine sample and blood drawn to test for variety neurological /immune illness. She also ordered a MRI and MRA brain & spinal column scans, but no facility in Livingston will do the combo. So they are making calls on there end to diff medical facilities and I have to call county health plan to get an approval or waiver or whatever.
The tech at St. Joes got me in one poke but OMG it hurt, they sucked out 7 tubes. Then I had to give urine sample, oh joy. I filled my cup and just as I was about to put the lid on I had a hand spasm and I dropped it!  Luckily dropped right in toilet so no mess, but I couldn’t squeeze any more out. It was 1am so Dad and I went to Big Boy nearby had soup and salad bar, and I chugged down 3 glasses ice tea, 3 glasses of water. Then we went back and I gave the urine sample.  Then we went and dropped Medicaid paperwork off to Dr. Nemeth my primary doctor in Whitmore lake.  Then we went home and I passed out for an hour because I was so exhausted.

Tueday and Wednesday I visited Rob. He has repeatedly told me that Tuesday day we would just be relaxing and having “us” time. Evening I had promised Melissa we would have dinner with her and “hang out”. I got to his place around 11am. Around 1 am he tells me we better get moving, he had told his nieces that WE would take them out. I was a little annoyed, because my fatigue and pain were horribly bad Tuesday and he should have consulted me 1st before making plans for US. But I gave in and though maybe lil walking would be good. On way to his niece’s house he starts telling me we are gonna stop here at this “ghetto” strip mall, then THE mall and here, here, etc. I told him NO we are going to the Mall and that’s it.  He started to get all huffy and pouts like a little kid.  I had to explain to him I know it’s only been 2 weeks since I have seen you, but I am in a lot worse condition. I’m not trying to be bitchy I just CAN’T do that much activity.
I did have fun at the mall with his nieces and him.  We checked out lot of stores, and picked up some great sale/ clearance items. The girls kept “stealing” my cane from me when I was standing still or sitting. They didn’t take it from me when I am walking, they were not trying to make me fall they just like to poke Rob or each other with it. 
Rob bought me a few things like a $40 satchel style bag/purse for only $8.50 on clearance and some strawberry daiquiri shimmer body lotion cuz he really liked how it smelled. The girls kept trying to talk us into taking them to dinner and I had to remind Rob 3 times we already had dinner plans, his nieces so have him wrapped around there finger.
We dropped them off at home around 6:30pm, went back to his place & called Melissa. She said she’d come pick us up around 8 and we went to Applebee’s. Then afterwards back to Rob’s to ”hung out”.
I was so exhausted I thought I’d be able to sleep better.  NOPE,  still bothered by insomnia, didn’t help me that Rob’s room is always too hot, and his mattress is like the cheapest thing on market. No padding, I can feel every spring, I tossed and turned so much I pulled the fitted sheet right off the bed.

Wednesday I woke up stiff and in really bad pain, not only was I feeling the deep bone/joint pain,  muscle aches but now the skin prickles, bug crawling feeling has turned into extreme sensitivity and “surface” pain. Rob was being affectionate and began to rub my leg, I was thinking’ I know that is supposed to feel soothing but that feels like rusty blades scrapping my skin.’ What I actually I said “please don’t do that it hurts.”  That’s when it dawned on him, just how bad my condition has gotten.  We spent most the day, just relaxing watching movies. 
Dinner time pissed me off. His Mother had called and asked his sister if the nieces and she were coming to dinner, they said NO.  Robs Mom wanted Chinese, she gave him $20 for it so I agreed to picking up Chinese from HER favorite place. SO Rob, his mom and I eat Chinese, but his dad wanted subway. It’s was little after 5 rush hour traffic, drove to subway got his dads sub, then stopped at Meijer because his dad wanted fritos, and picked up a diet soda for me. Then we went to Chinese place ordered the food. Rob forgot that there was construction(Michigan one way streets) so I could not go back the way we came, So I’m getting all irritated and anxious with the heavy traffic and driving a long unfamiliar round about way to get back.  We get there Rob cusses says His sis car is in the parking lot! I say don’t stress if there’s not enough you and I can go eat something else. When we step inside they tell us did you get both orders? What we made another order didn’t you pick it up too? No. I said No I wasn’t going to go get it. Was thinking why his sis doesn’t go get it she keeps getting FREE meals, least she can do. Rob pulls me back out the door, we have to go do same round about thing to get Chinese this order he had to pay for with his money.  Each time the orders totaled around $20. The food was crappy and made me sick. His sis took leftovers home with her, even though her family comes over for chinese or orther take out at least twice a week I’ve never seen her pay for any. I tried to explain to Rob that I HATE that he lets his family walk all over him, use and abuse him. I will NOT accept that behavior and I’m not going to allow myself to be treated that way and he needs to change his attitude because I don’t want to be dragged into things I don’t agree to.  I don’t care if they think I am a bitch, life is to short to deal with this bull$#@!.

Thursday morning I dropped Rob off for his commute to work and drove home. I spent most the day recuperating and making phone calls. So my MRA & MRI have been approved by my health plan to be done and in some hospital in Southfield. Though I still may have to pay some “facility fee”?  Neurologist office said they were contacting the facility and I should get a call, about setting up an appointment.

Friday I went to see the rheumatologist. My appointment was at 11am, but Dr. Dowd was running at least 40 min late, Dad always has to be early so we were 20 minutes early. So we had to sit forever in the waiting room. Dad had forgotten his book, so he was really fidgety.
Finally the nurse took me to get weighed , to an exam room, took vitals & asked me a bunch of questions. Then a resident doctor came in interviewed and prodded me and left. Then Dr. Dowd with resident in tow came in. Dr. Dowd asked me a whole bunch of questions, occasionally talking about me in 3rd person as he explained things to the resident and gave me a thorough very painful exam. Afterwards he told me he wanted me on a special diet, ordered 15 blood tests, and gave me prescriptions for mega dose vitamin D and magnesium. He said that every overweight patient he has treated with similar symptoms, have shown to have these vitamin deficiencies and when corrected symptoms got better or went away.
Dowd’s practice has a lab right there in his office, so just draw my blood there right? I told his techs I was a very hard poke, both techs took a try one in my hand, one in arm, both missed, so then I got sent to the Woodland hospital where I’ve been getting blood draws. They had to get 11 tubes out of me, and didn’t want to use a hand vein cuz it’s more likely to collapse so 2 more techs and 2 more pokes in arms, both misses, so finally got one in my hand and sucked my blood out. It was 2 pm by then, the only thing I had eaten was oatmeal at 930am, and bottle of tea while waiting for blood draws. So hunger, pain and massive blood draw had made me a bit dizzy. The
Tech gave me an icepack, made me drink crappy city tap water and sit for a while before I could leave.
Then we went to the store (Dad wanted milk & lotto tickets) and to the pharmacy, pharmacist could not understand what dosage magnesium prescriptions was for, was only 3pm but Dowd’s office had already closed and on voice mail. So pharmacist said he’d just hold prescription and call doc Monday and I’ll pick it up then.
I’m not sure why but by evening my feet had swollen up, especially my right, the skin was so stretched and painful I though my foot might explode. Probably had to do with the chairs in Dowd’s waiting room, they were hard wood chairs that cut into the back of my legs, I have the same problem with our kitchen chairs if I sit on them too long.

Today since it was to be over 90 F and dreadfully hot and humid for Michigan.  Mom precooked the ribs and made potato salad early in the day when it was cooler. We were using the grill for dinner. Dad went out and bought me some salmon (it was on sale) and more veggies. I wanted to marinate the salmon, had bottle of teriyaki marinade, used knife cut plastic safely seal off and then half bottle pour down the front of me, it had been sealed with plastic but not screwed on! Even after taking a shower I still smell a bit like teriyaki. LOL
Now that I have been ordered to eat a move semi- Veg diet by a doctor my Dad is actually on board and being more supportive.  Doc’s diet plan: No salt, No red meat, No processed meats,  No cheese, NO pasta, bread, cereal, No eggs, Small amounts of lean meat & fish, limited whole grains & beans, LOTS of veggies and fruits.
Dad went to play cards, and Jenkins went to visit a friend. So it was only Mom and I for dinner so we invited sis Amber and nephew Aaron over. There was so much food left over even though sending some home with Amber and saving a LOT for Dad. So when Lily came to the door we gave her a big rib, it was one that got a bit charred. Lily is what Mom named the raccoon that comes to visit everyday.  She is our “garbage disposal” any leftovers that no one else will eat we give to Lily, when we put them in the garbage she’s made a mess dumping the cans. 

Tomorrow I’m going with the parental’s to church to see my brother perform. Its one of those more modern churches, will full band. “Hip” music and they perform skits and such to keep people more entertained. Afterwards we all are going to fathers day brunch.

So that was the week of June 12th- 18th

Sick & Tired of being Sick & Tired

For around 6 years I’ve been suffering from a general sense of not feeling well and dealing with the challenge to adjust to this and even accept it. Knowing I am ill, but having doctors too ignorant or negligent to find a diagnosis. Going about life with pain and discomfort and finding it difficult to achieve goals. Adjusting to this state of unwellness is a daily challenge.

As difficult as it is for me to adjust and accept this constant state of unwellness the periods when the illness become more severe present an even more formidable challenge. When the disease attacks, the unwellness shifts to almost unbearable sickness. Pain and fatigue can be so severe as to make movement agonizing.  My sleep, mental functions, motor skills are impaired, simple little things like getting dressed, making meals become minor battles.
As frustrating as it is to accept limitations imposed by my illness(es), worse still are the shame and embarrassment as well as anxiety that come from trying to communicate my limits to others and asking for help. It is difficult adjusting to being handicapped when appearing well.  People often think you are “faking” or hypochondriac. “How can you be sick when you look fine?” There’s this sense of being distrusted and my own self doubt and confusion make me terribly vulnerable to the suspicious and misperceptions of those around me. “Maybe if you went on a different diet, exercised more, slept better, tried yoga, saw a therapist etc”

These periods when my illness(es) “flares” are extremely difficult to endure, not only because of the pain, limitations and lack of understanding(even from my old doctors) but also because of the fear that the disease may seriously worsen, attack new organs or body systems, threatening not only my quality of life but my life itself.  I worry will I have to suffer like this for the rest of my life; will I end up in a wheel chair, bed ridden?
Suicidal thoughts have been frequent; attempting to adjust to the uncertainty of my unwellness can at times make death seem clear, simple and desirable.
Being dependent is a humiliating experience.  I feel worthless, desperate, weak, and vulnerable but I try to appear strong and in command of my self, my life. This “illusion” I guess gives me some sense of worth.

If someone asks “how are you?” my usual 1st response it to answer “fine” even though I may feel terribly awful.  I am already an obese woman and considered an undesirable lower life form by societal standards, the fear of the persons impatience or rejection and the desire not to appear a whining, complainer too, compels me to LIE. These feelings of wanting to be accepted,  to not feel like an outcast often provoke me to act as a people pleaser. I want people to be happy because it they are pleased they will like me. But am I really doing myself any good?
This blog is helping me to not be so preoccupied with what everyone else thinks of me and to be more true to expressing myself. This has resulted in some friends choosing not to talk to me as much or not at all but others I found to be true friends and check in with me often.

It is great to finally having a primary care physicians who’s intelligent enough to see that there has been some underlying illness since around 2000, and willing to listen to me and encourage me to see as many specialist as it takes, because she wants to know too.  She’s not just about “your 15 min are up, pay me and get out the door.”
I do have Hope, not that I can be cured but that I can finally find answers and learn to cope, survive and thrive despite my illness.  That I will learn to accept my limitations without feeling worthless and accept the suffering of today with grace and dignity. To take one day at a time, to plan for the future but not stress over the worst that may come. Plans can be postponed or changed when need arises and I have the strength to deal with it and keep moving on and live a content life.

Continued...

Life Sucks

This really sucks that I am feeling progressively worse and worse than worse.  The pain and weakness are so unbearable that I can’t even do daily functions very well.  I’m get so exhausted after short amounts of activity. I’m having dizzy spinny feelings almost every day. I try to take naps or sleep more but I either can’t sleep or I wake up sore and stiff, in pain and still feel exhausted.  I feel so agitated, irritable and depressed that I often withdraw into my room so I won’t be“ bitchy’ to my family or so that I can cry alone. Getting up and down those 8 stairs feels like climbing a mountain I get all out of breath, pounding heart, muscles ache like I’ve done aerobics and /or weightlifting. This is not just “being out of shape”
I am crying everyday now. I’m taking supplements to try improving my mood and quality of sleep but they aren’t working anymore. I hate living like this, that doctors only treat me symptom by symptom.  ‘Yes your tests are abnormal, something is wrong with you but it’s not my area go find another doctor.’

I’ve had an awful IBS attack that has lasted for 3 days. My guts are aching and spasming, and well I’m spending a lot of time running to the bathroom. It’s very unpleasant indeed, to say the very least.
I’m glad Dad got back early this morning from his weekend away at his highschool reunion and drove me to the clinic to get my blood tests today. I have bad migriane, was nauseous, abdomen and head hurting so bad and brain so non-functioning I didn’t want to drive myself and actually wasn’t going to go.  I guess I looked pretty bad this morning because the tech was asking me if I needed something to drink or if I needed to lie down. I told her just take my blood so I can go home
At least they got the needle in with the 1st try this time. They needed 4 vials of blood, but my blood was not coming out so readily so 2 of the tubes where switched to half size pediatric tubes. I was thankful of that.

When I got home I tried again to get a hold of my assigned worker at FIA about medical. I left another message on her voice mail. Then I went around shut the windows because I was so cold, the stress and chilly morning caused me to go into a bad Raynaud’s attack.  I got so chilled that I was shivering and my extremities turned pale.  I tried just grabbing a sweater and a blanket but it didn’t help. So I got in bed with a comforter and 3 blankets covering me and pulled up around my head and at least one cat, sometimes 2 cuddling with me for over an hour to get warm again. These attacks are becoming more frequent, times like this I really miss Rob he is like a furnace. The body heat coming off him could warm a small car. LOL He can tell you when I have Raynaud’s attack my skin is Freezing to the touch. Not just a clammy cold, but ice cube cold. Ever tease your friends by sneaking ice cubes down there shirt/pants? Well I do equivalent of that with my icy hands.

Oh results from last Tuesday May 30th blood tests:

• Kidney function panel, Cholesterol panel and thyroid test where normal.

• One of my liver enzymes, Alanine aminotransferase/ Serum glutamic-pyruvic transaminase(ALT/SGPT) was slighty elevated
The ALT test detects liver injury. Could be due to the Prednisone?

• My white blood cells where slightly elevated
An elevated number of white blood cells is called leukocytosis. This can result from bacterial infections, inflammation, leukemia, trauma, or stress.

• My Sed Rate was slightly elevated.
The sedimentation rate (sed rate) blood test measures how quickly red blood cells (erythrocytes) settle in a test tube in one hour.
When inflammation is present in the body, certain proteins cause red blood cells to stick together and fall more quickly than normal to the bottom of the tube. The more red cells that fall to the bottom of a special test tube in one hour, the higher the sed rate. These proteins are produced by the liver and the immune system under many abnormal conditions, such as an infection, an autoimmune disease, or cancer. There are many possible causes of an elevated sedimentation rate. For this reason, a sed rate is done with other tests to confirm a diagnosis. Once a diagnosis has been made, a sed rate can be done to help monitor the course of the disease or the effectiveness of treatment.

So slightly elevated white blood cell & Sed rate is no surprise, but I am a little concerned about the liver enzyme.

Oh the Humidity

Tuesday morning I had my weekly CBC for Dr.Winegarden and 8 blood tests for Dr. Nemeth. One was a 12 hour fasting tests, fasting makes getting at my veins even harder. They had to draw 5 vials of blood and it took 2 techs and 2 tries to get the needle in. 

Then I went off to visit Rob. We had not seen each other in 2 weeks because his days off are the days most my appointments fall on. I didn’t even get to spend a full 24 hours with him, because I had to drop him off at 6am this morning. Today he is a chaperone for his niece’s Middle School Cedar Point trip today.  These kids are spoiled my schools never did anything like that and It’s $60 a person!

While I was at Rob’s we had some intimate time, watched a rental move “The Ringer” he took me shopping, to dinner and we also saw “X-men 3” at the theatre. He was trying to fit a lot into one day because he missed me so much. 
I may not get to visit Rob again for another 2 weeks. But hopefully in a month he will have a car again, so he can come visit me. A couple months ago his car totally blew its engine and was unrepairable.

Today Wednesday I got the results of my CBC my platelets have dropped 56,000 to 198 x10^3/uL, but that’s still in the “good” range.   

This heat and humidity has been awful, I’ve been staying in the basment most the day because its cooler and we have no air conditioning, but that means I’ve had to go up and down the stairs more. To grab the phone, use bathroom, to let the cat(s) in before they tear a hole in the screen door, etc.  Its just hard to accept 9 months ago, I could run up and down the stairs with baskets of laundry with little problem. Now I feel like I have heavy weights on my body and my muscles and joint ache and burn like I’ve been doing extensive aerobic exercise and weightlifting when I just try to drag myself up the stairs
I got a letter in the mail saying that a waiver program for medicare is being reinstated in my county for the month of June and that should mean I can not be denied. So tomorrow I am getting the paperwork. I’ll try to remember all the info they want so I can just fill it out right there and turn it in, And call and bug them everyday so &^%$# can’t do like last time and not return my call until two days after the program ended. This medical covers hospital stays, hopefully covers IV treatments and wider area of doctors. I really need to find a good rheumatolgist and be able to afford treatment for ITP.

Weary Week of Testing

Monday 22nd I had my weekly blood test and to my surprise my platelets are in the normal range again at 254 x10^3/uL.   My prednisone is decreased to 15mg a day. As they decrease the prednisone some of the side effects go away or lessen but all the “immune” sysmptoms are coming back with a feirce force.  

Tuesday I met my new Primary care physicain Dr. Edith Nemeth, she seems to be lot more intelligent that my former doctor thought she um has a bit of an abrasive personality.  She kept asking a question that got me thinking too. What is the cause of these symptoms, that are not related to Hashimotos or the ITP?  The increasing muscle/joint pain and stiffness, weakens, anxiety, depression, Irritable bowel syndrome, irritable bladder syndrome, migraines, dry painful eyes, muscle twitching, sleep problems, memory/concentration problems, difficulty seeing at night, shortness of breath, occasional ear ringing& dizzy spells.  Doctors have kept telling me it’s a “rheumatic”auto immune problem, but its not Lupus, its not Rheumatoid Arthritis, etc.  Ok they keep ruling out all these different ones, why don’t they tell me WHAT IT IS, instead of what it‘s not? 

Both Dr. Nemeth and Dr.Winegarden have told me I need to see a Rheumatologist. Dr. Nemeth also told me to find an endocrinologist because of the PCOS.  The Problem I have run into is my medical coverage; Livingston Health Plan will only allow me to be referred to and see doctors in Livingston County. There is only one Rheumatologist in Livingston. I do not know if he will accept my insurance. What I do know is he is the same doctor I saw in 2001 that implied I was a hypochondriac and didn’t give me follow up care.  Yeh, I’m so crazy I gave myself an uncurable blood disease.    Ignorant morons. Also there is NOT ONE single endocrinologist in Livingston.  I’m getting too weak and tired to keep jumping through hoops. 

Wednesday I went to see Dr.Winegarden the hematologist again. I ended up only seeing him for like 5 minutes it seemed but being at the woodland clinic for over 3 hours. 1st waiting around for my appointment with Dr.Winegarden, then because of my shortness of breath and increasing muscle weakness he was concerned about clots caused by the APS. I was pretty sure it wasn’t clots because it’s all over muscle weakness not localized to one area, but he wanted to be sure so he had his receptionist schedule me for a Doppler Ultrasound of my legs and chest x-ray and CT scan of my chest. So I sat an hour chatting with the receptionist while she tired to get different labs or hospital to fit me in ASAP. The ultrasound I got that day at the clinic, but still had to wait quite at while because they squeezed me in to the end of the technicians shift. But my legs were all clear of clots.

Thursday we had some mighty thunderstorms out here, and we lost power around 7pm until morning. This happens quite often, especially since they built the subdivision of 30 or so houses were the woods use to be and didn’t install stronger transformers or whatever on the power lines. So as soon as the storm rolled in we got candles ready and set out buckets to collect rain water. Our toilets can’t refill with water & thus be flushed when the electricity is off, so we use buckets of rain water to “flush”.  We may live in the”county” but we ain’t uncivilized. LOL.  It was amusing to watch all the people panic and zoom off in there vehicles to restaurants, stores, hotels. Was actually nice we all sat around by candle lights and actually socialized, no TV, no computer gaming.

Friday morning I went to McPherson Hospital for the Chest X-Ray and CT scan of my chest.  The X-ray was quick and simple. The CT scan was not so painless.  They have to put an IV in to inject the contrast dye so they can see your circulatory system better.  I warned the CT tech my veins were hard to get. She poked me and didn’t get a vein then proceed to try and root around to get the vein only succeeding in causing me pain. So she went and got someone else. This tech also missed the vein on 1st try but after extremely painful digging around in my arm she finally got the IV in the vein. I now have a 2 inch deep purple, tender bruise on my arm. Also during the process of holding my arm down to get the IV in and/or pinning it behind my head on the CT table my upper arm muscle and shoulder joint was injured. It was so painful that all day I couldn’t lift my arm.  Ahh, the gentle touch of caring technicians.  It’s still sore now, but I can use it little bit I just can’t pick up heavy objects.

Every LiL Bit

So what’s been going on this week? I had my weekly blood draw early Monday morning, and then I drove my sister Amber and nephew Aaron around for some shopping.  It’s been raining like a hurricane in Michigan the last week and a half, Amber owns a truck and didn’t have a truck bed cover (thats one of the things we were shopping for). I didn’t want her to have to squash her groceries all in the truck cab nor have the groceries get ruined by the rain.

Tuesday and Wednesday I went to visit Rob. Had a whole list of errands we both needed to get done and accomplished very little for a couple of reasons;
Rob is not very motivated on his days off, getting him up AND out of his home by 2pm is a miracle. I kept running out of energy and enthusiasm, my joints have been feeling increasingly stiff and sore and I’m having problems with allergies/asthma, shortness of breath, wheezing. Also we spent time each day at the Hospital visiting Rob’s mom.

Interesting coincidence is Rob’s Mom has been in the hospital all week because she also is having autoimmune problems. She has had Hashimoto’s thyroiditis for 15 years or so. In the last month she began to get ill and swell up like a balloon. Her immune system is attacking her kidneys, they weren’t filtering out the water. She has been diagnosed with Nephrotic syndrome.
‘Nephrotic syndrome is a condition marked by very high levels of protein in the urine (proteinuria); low levels of protein in the blood; swelling, especially around the eyes, feet, and hands; high cholesterol and sometimes high blood pressure. Nephrotic syndrome results from damage to the kidneys’ glomeruli. Glomeruli are tiny blood vessels that filter waste and excess water from the blood and send them to the bladder as urine.’
She is undergoing treatment and doing much better, the swelling has decrease quite a lot, her urine protein levels are down and she will be released from the hospital tomorrow. They were just waiting for her kidney biopsy results to come back to figure out the exact medication to treat her with.

Late Wednesday I was messing around on Rob’s computer, looking stuff up on Nephrotic syndrome for him and thought I’ve never googled my own name, I wonder what I might find? I found a message from a college friend looking to find me, but the message was from 2003! I emailed the address given, but have received no response. She lived in Washington at the time. Today I used zaba people search and if the information is correct it seems that just this year she moved back to Michigan. It didn’t give an email, but I do have postal address so I will send her a letter.

Today, Thursday morning I returned to my home. Checked my mail (more medical bills and junk mail), listened to my phone messages and gave my kitties treats and cuddles. I was told they were throwing tantrums while I was gone.
I got some Good news on the answering machine. The hematologist office had called me. They told me I am to continue to decrease my prednisone another 10 mg, so i’m down to 20mg a day.  My platelet count as of Monday’s test is 133 x10^3/uL.  That’s means my platelets went up 10 x10^3/uL. YEAH! 

Find Joy in the Little Things

Late Wednesday night or well early Thursday morning since it was after midnight, I got a little surprise that cheered me up. After watching a movie with my eldest sister and brother in law, I was on my way to my “dungeon” bedroom and had to pass through the kitchen to get to the stairs.  I looked over at the sliding glass door and there was a big frog with his little suction toes stuck on the glass. I do live out in a rural area, see wild life all the time but I’d never seen a frog this big on our property let alone right there in front of me like someone put it on the door for me to find. I called my sister and brother in law over to have a look & they probably thought I was weird because I got so excited over a frog. But being that I am such a nature/animal enthusiast (hence my degree in Zoology) this simple thing delighted me.  It had been such a Blah day, dark and stormy and here before I go off to bed was this adorable little “miracle” just for me. Too bad Mom left her digital camera at work.

Thursday afternoon and most of Friday I spent doing lots of laundry and cleaning and dealing with my now ex-primary care physician being an @$$ because she doesn’t want to put any effort into helping me get assistance through Social Security. All I asked for was a summary letter of her medical treatment of me. I even typed up an outline for her trying to make it simple for her receptionist/secretary, since all the doctor actually does is sign it. The summary letter would make it easier on the social security people to review my case. But they refused to do it and said they would just release my files. Standard procedure is to just release all my medical files to S.S., but the doctor herself sometimes can’t read her own hand writing and because she has been so ignorant and lackadaisical with my treatment in the past I don’t trust that she has recorded all my pertinent info in my files. So how am I to expect that I am going to get a fair review if S.S. people can’t read the files or find adequate data? SIGH!

Friday I got another job rejection. After sending my resume every couple weeks to the heads of veterinary and zookeeper staff of Detroit Zoo, the Head Veterinarian called me and politely said they would only hire licensed Vet’s and Vet technicians and would I stop sending her resumes. But still no word from the Head Zoo Keeper; though in all likelihood he just doesn’t think I am worth his time to call.

All this disappointment surmounted into me having a break down at dinner and embarrassing myself by crying and wailing and probably being over dramatic. Though my family reassured me that my reaction was understandable for the stress I am under, and they are hear to support me. I still feel awkward; I was so used to being “the rock”, the stable, independent, reliable child. This last 2 years, I feel like I have been more a burden.

Saturday evening was a Mother Daughter Banquet at the little local Church I was raised in. Mom wanted all her “girls” together because soon we will all be moving farther away and it will be difficult to have little celebrations like this. Amber and Aaron will be moving to a North Carolina, military base with her husband in June. Anne, Les & Courtney are planning on moving to a new place by the end of the summer. I have no ideal what my future holds at this point, but it’s possible I may be moving too. So mom’s daughters (except for Alica who never comes to any of our family functions anymore) and her only grand-daughter agreed to attend the banquet. The amusing thing was the major entertainment was my biological brother, Aral (I have 3 brother in laws) He did a little stand up comedy, read poems and sang some. He picked a lot of Mom’s favorites so of course she cried and it was very special for her, but rest of us were kind of bored. LOL Not that my brother wasn’t entertaining because he was. But there was not a lot of socialization; the majorities of other women there just didn’t make too much an effort to “mingle”.
But as we were leaving one person did stop me and ask me how I was doing, Diane.
Diane & Don are long time members of the church. They eat a vegetarian and anti-gluten/wheat diet because of Don’s autoimmune digestive condition and other health reasons.  Diane has been trying to convert me to vegetarianism for a while. When I mention I was tying to transition over to Macrobiotics, because of my immune problems she invited me to come with them to a vegan pot luck she attends once a month on Sunday afternoons. So that might be cool, Rob works Sundays and I won’t have any doctor appointments so I plan to attend. It will be good to have a “dietary” support group and learn new recipes.

More Not So Great News

I have been feeling very crappy this week; the joint pains are back, asthma/allergies, swollen ankle & foot, still having migrianes. I feel very tired, & run down. I haven’t been able to sleep through a whole night, either because I have to get up and pee every 3-5 hours or I just keep waking up. The prednisone is affecting my blood sugar and serotonin so bad that I’ve gained 8 pounds in the last 2 weeks. That might not see like much but to an already obese women every pound added is a major concern. I’ve been starting to have this “discomfort” and occasional stabbing pain in my left chest that is worrying me. I keep feeling like crying, I feel so frustrated and overwhelmed but if I let myself cry I do it alone because I don’t want to upset my family. But maybe I need to be more emotional and hysterical when I see the doctors. Today I received a copy of Dr.Winegarden’s evaluation letter of me from my initial visit on April 26th, it starts “In general she is an obese female in no apparent distress” Of course I’m $#%@&*! Distressed, but I didn’t think being over emotional was going to help my diagnosis, even when I’m in severe PAIN, people close to me will vouch that I laugh and make jokes. I guess nice people do come in last. It really Pisses me off that because I am pleasant my condition is deemed less severe.

Ok, So I saw Dr.Winegarden, my hematologist today.  They are going to continue to wean me off Prednisone over the next few months and my platelets are going to continue to fall. When I get close to critical again, he will try intravenous treatments, but since they cost so much and I don’t have medical coverage for them he is doing a wait and see thing, hoping i get coverage soon.

The 3 choices he mentioned:

IVIg: This is an intravenous infusion of immunoglobulin, a type of antibody.  The antibodies attach to the receptors in the spleen, sparing the removal of antibody coated platelets. This treatment is a temporary measure and is not expected to result in a sustained elevated platelet count, although in some rare cases this does happen. The side effects include allergic reactions and heart palpitations.
  Usually a dose of 2 grams per kilogram is divided into five doses and 400mg/kg is infused daily for 5 days. (For the first time only) Some patient can tolerate consecutive days. It is recommended that young women take this on alternate days. This is followed by a monthly infusion of 400mg/kg. It takes about an hour each time to get the infusion, And a single infusion costs about $3000 for an adult!! That’s $48,000 a year, if it even works!!!

WinRho: is a purified human immunoglobulin used to treat immune thrombocytopenic purpura or ITP. It is given by a 3-5 minute infusion into a vein. Anti-D may help raise the platelet level for about one month after each infusion. Some studies have shown Anti-D to raise the platelet level for about 90 days. Periodic infusions of Anti-D may allow patients to achieve stable platelet counts, and is cheaper than IVIg about half the cost.                      However, because WinRho SDF antibodies and action are so specific, it is only effective for people who are Rh positive (85% of population) and have a spleen.  It may not be suitable for some pregnant women.

http://www.winrho.com/animation/index.html  This is a nifty little animation that explains ITP and how WinRho works. 

Rituxan: This is a monoclonal antibody approved by the FDA to treat lymphoma. There has been some initial success in its use to treat ITP.
Rituxan reduces the number of B cells in your body. B cells are a type of white blood cell that, when activated, multiply and produce antibodies. Since Rituxan reduces the number of B cells it reduces the number of cells that produce antibodies including the antibodies that attack platelets.
Rituxan reduces the general population of all B cells with a CD20 receptor. It could take up to a year for someone to replace those B cells and have their immune system and antibody production (including the helpful antibodies) back in working order.
The manufacturers of Rituxan which is known chemically as rituximab are IDEC Pharmaceuticals and Genentech Inc. They say that a course of four weekly transfusions, each about an hour long will cost about $9,000 and could last up to a year.

Also because I tested positive for Lupus Anticoagulant, Dr.Winegarden tested me for Anti-Cardiolipin Antibody which I was also positive. This is indicative of Antiphospholipid Antibody Syndrome, but since I don’t have a history of blood clots and/or thrombosis Dr.Winegarden said he will monitor this condition but not treat it until my ITP is under control or I develop problems with blood clots & thrombosis.

Antiphospholipid Antibody Syndrome is a very rare blood disorder characterized by recurring blood clots. In the Antiphospholipid antibody syndrome, the body recognizes phospholipids, (part of a cell’s membrane), as foreign and produces antibodies against them. In young women, it may be associated with spontaneous abortions for no apparent reason.

Up to one in four people with idiopathic thrombocytopenic purpura have antiphospholipid antibodies. Over time, many of these people develop APS. People with idiopathic thrombocytopenic purpura and APS may form blood clots or develop bleeding problems, including life-threatening severe bleeding. Also, red blood cells can break down abnormally; causing fatigue, dizziness and pale skin, but this is more common in people with lupus.

Ohh Joy , on one end I can bleed to death on the other I have to worry about clotting and strokes. I really am a %$#@*^$ up mix of YIN and YANG. 

Oh No! My platelets are dropping

This morning I had my blood drawn again for my platelet count. Then waited around all afternoon for the Hematology office to call me, by 2:30 when I didn’t hear from them I called and informed them that my blood WAS drawn that morning and I was out of Prednisone, so I needed them to figure out what they wanted to do and call back.
Finally they called me back at 5:00 and told me they are reducing my prednisone to 30mg a day even though my platelets dropped to 123 x10^3/uL. They have to wean me off the prednisone because staying on it will make me ill in other ways. My platelets are below the “normal” range (245-445 x10^3/uL) but the hematologist said its still safe, that the normal range in typical people includes old and damaged platelets and because my body is destroying mine so fast all the ones I have are brand new, just made ones so they are very efficient and I don’t need to seriously worry unless I get below 60 x10^3/uL. But I still need to be careful to not engage in rough activity. So I had to pass up an invitation to Cedar Point:down:  , being banged around, high G-forces and all that are not advisable.

I had the Hematologist’s receptionist call my new Prednisone prescription into my pharmacy and I also called my pharmacy to have my Levothroid (thyroid medicine) refilled too. I will pick them both up tomorrow because I got my medical card in the mail today. I should only have to shell out co-pays on my medicines now, not pay full price anymore, YEAH!

Wednesday I will have my 2nd appointment with Dr.Winegarden, find out what further treatment options I am offered and what the results are from all the tests he did 2 weeks ago.  I’m trying not to get too worried that my platelets are dropping again, but it does scare me.   All the medications have such horrible side effects; periodic IVIg transfusions would be ok except my veins are so hard to get at that the technicians have trouble just to get the blood for my tests. But if I have to get frequent transfusions I could get an “implantable port” that would make things easier and less painful.

‘Ports are made of biocompatible material such as titanium, which does not cause the body to react. The hard case has a self-sealing opening, or septum-about the size and feel of a pencil eraser-on the side that faces the skin, through which a needle can be inserted. That opening gives easy access to the system that delivers medication to the veins.
A port appears as a small bump on the patient’s skin, on the chest or arm. Inside the body, a flexible tube or catheter reaches from the port into one of the patient’s larger blood vessels-giving the medication a route to the bloodstream.
Like so many advanced medical technologies, implantable ports not only improve care for patients, they also provide a more cost-effective way to access the veins than other methods. Experts estimate that the cost of an implanted port equals about ten intravenous (IV) sticks from the outside of a patient.’

http://www.advamed.org/publicdocs/implantable_ports.html

1st Week of May

Well it’s been over a week since I posted any news so I though I better say something so people know I am still alive.

Well I finally got approved for the Livingston County Health Plan; it’s a limited medical plan. I’m just waiting for my insurance card to show up in the mail. From May on my blood tests will be covered, only $5 co-pay office visits, $5 co-pay generic, $10 co-pay on brand name prescriptions.  Hospitalizations, surgery, some specialist services are not covered but the weekly blood work, office visits and medicine are what’s costing me so much so I’m glad there covered.

I was naughty and skipped my blood test last Monday May 1st, the Dr. office called and scolded me but I figured I didn’t have my insurance card yet and didn’t want to deal with the hassle of back billing, I was feeling ok and my last test showed my platelets were fine.

I spent most of this past week with Rob. I went to see him Monday evening, hung out with our friend Melissa. I made drinks and they both got drunk. I was the designated driver and took us on a run to White Castle for munchies and to 7-11 for slurpees. (I had a diet strawberry banana slurpee)  I can’t even remember the last time I had White Castle, prior to that night/morn. I’ve only eaten it like 3 times in my life but Rob insisted he had to have it. Ugh, I don’t ever need nor want to eat that crap again, 

Tuesday we went shopping. Rob bought me some wire bending/sculpting stuff for jewelry making, we stopped at a small Asian market near him they didn’t have much but I did pick up a few Macrobiotic friendly food items. Also we went to a pet store where I bought my cat Phattie kibble that is gentler on the stomach, special treats and “medicine” gel, to help her have a healthy happy bowel.    Her tummy is still quite bloated, but not hard or painful (she will let me squeeze her without protesting) and she is “going” regularly again.  I am still a little worried over her, but so far so good. She doesn’t need surgery.

Wednesday We hung out with Rob’s Friend Terry at a coffee shop and played “real” Chinese Mahjong.  Terry will go berserk on anyone,  over the debate that the “computer tile matching game” is not real Mahjong. Real Mahjong is a lot like bridge; you match tiles in suits and pairs and have to do so in certain patterns so you have the right amount of tiles to go out. It actually kind of complicated and I’m just learning it.

Rob’s Mom has been quite sick all week and after missing 2 days of work she finally decided to have Danielle (Rob’s Sister) take her to the doctor on Thursday. Which meant Rob didn’t have a ride to and from work since he car pools with his sister. So I drove him to Dearborn Thursday morning and then spent the day out there looking for jobs, checking out the huge Borders Book Store and almost finished reading my book on Macrobiotics I bought from Borders. Macrobiotics cooking is basically vegetarian Japanese food. There’s also a whole philosophy and daily ritual part to it.

Saturday I did a day of grocery shopping with my Mom. We went to Whole Foods, Meijer’s and Randazo’s a farmer’s market type place. We picked up a couple types of brown rice, 3 types of beans, 2 types lentils, and barley. So I am pretty set on whole grains and beans but I was disappointed because the number one bean, the Adzuki bean that the macrobiotic book recommends was only sold at Whole foods and they were sold out.  We also got a lot of good fresh veggies at Randazo’s, but all the weird seaweeds, sea vegetables and other Japanese stuff I will have to find at a major Asian market.

So I am going to try and wean myself off meat & dairy and hopefully work my diet to the 50-60% grains, 25-30% veggies, 10% beans and occasional fruits, nuts, seeds, fish that macrobiotics recommends.  Even if I can’t get myself to go full Macro I figure at least reducing some of the “immune irritating” foods will do me good.  I also have to be careful because I have to limit my servings of Soy a day and not eat it within 3 hours of taking my levothroid because Soy interferes with thyroid function and thyroid medicine. 
‘Isoflavones, the key components of soy that make them so potent as a possible substitute for hormone replacement, mean that soy products, while touted as foods and nutritional products—often are used and act like a hormonal drug.

If you have a diagnosed or undiagnosed thyroid problem, or a history of autoimmune disease, over consumption of soy isoflavones can potentially trigger a thyroid condition. Soy foods can worsen an existing diagnosed thyroid problem in many people.

Isoflavones belong to the flavonoid or bioflavonoid family of chemicals, and are considered endocrine disruptors—plants or other products that act as hormones, disrupting the endocrine system, and in some cases, this disruption involves acting as an anti-thyroid agent. (The grain millet, for example, contains high levels of flavonoids, and is commonly known as problematic for thyroid function). Flavonoids inhibit thyroid peroxidase (TPO), which disturbs proper thyroid function.

According to the Soy Online Service, for infants, any soy is too much. For adults, just 30 mg of soy isoflavones per day is the amount found to have a negative impact on thyroid function. This amount of soy isoflavones is found in just 5-8 ounces of soy milk, or 1.5 ounces of miso.
Hydrolyzed Commercial Soy Sauces 0.10 mg soy isoflavones /100g serving and soybean oil 0.0mg/100g have had most/all isoflavones removed in processing so they are ok for frequent use.’