Misery and Mirth

May 2009

May 2009
I saw my Neurologist Dr. Begum since my neurological symptoms are “stable” I will only be seeing her every 6 months now, unless something new arises of course.

I saw Endocrinologist Dr. Choksi She ordered some blood work, didn’t send me a copy like I requested but left a message saying my blood work was “fine”…for someone with Polycystic Ovarian Syndrome.

I am in the process of acquiring a new Rheumatologist. I will be seeing one at U of M. My previous Rheum was ignoring some of my health issues. When I 1st saw him in 2000 and fibromyalgia was mentioned even though I met the criteria he led me to believe it wasn’t a “real” illness. 2006 he told me my only issues where autoimmune and again blew off Fibromyalgia.  He prescribed me pain medicine, vitamins and a diet plan and told me if I followed it I’d be “healed”.  2008 still ill, he acted annoyed, like I was a naughty child and told me to just keep following his plan.

Recently a friend gave me a book on Fibromyalgia, even though for the last 2 years I adamantly believed my Rheumatologist and all my problems were just due to Lupus. She told me just read the book. That’s when I learned people with autoimmune illness like Lupus or Rheumatoid arthritis are at much higher risk of getting Fibromyalgia too!!!

Fibromyalgia (new lat., fibro-, fibrous tissue, Gk. myo-, muscle, Gk. algos-, pain), meaning muscle and connective tissue pain (also referred to as FM or FMS), is a disorder classified by the presence of chronic widespread pain and a heightened and painful response to gentle touch (tactile allodynia).[1] Other core features of the disorder include debilitating fatigue, sleep disturbance, and joint stiffness.

Diagnosis
There is still debate over what should be considered essential diagnostic criteria. The difficulty with diagnosing fibromyalgia is that, in most cases, laboratory testing appears normal and that many of the symptoms mimic those of other rheumatic conditions such as arthritis or osteoporosis. In general, most doctors diagnose patients with a process called differential diagnosis, which means that doctors consider all of the possible things that might be wrong with the patient based on the patient’s symptoms, gender, age, geographic location, medical history and other factors. They then narrow down the diagnosis to the most likely one. The most widely accepted set of classification criteria for research purposes was elaborated in 1990 by the Multicenter Criteria Committee of the the American College of Rheumatology. These criteria, which are known informally as “the ACR 1990,” define fibromyalgia according to the presence of the following criteria:
• A history of widespread pain lasting more than three months—affecting all four quadrants of the body, i.e., both sides, and above and below the waist.
• Tender points—there are 18 designated possible tender or trigger points (although a person with the disorder may feel pain in other areas as well). During diagnosis, four kilograms-force (39 newtons) of force is exerted at each of the 18 points; the patient must feel pain at 11 or more of these points for fibromyalgia to be considered.[122] Four kilograms of force is about the amount of pressure required to blanch the thumbnail when applying pressure.
This set of criteria was developed by the American College of Rheumatology as a means of classifying an individual as having fibromyalgia for both clinical and research purposes. While these criteria for classification of patients were originally established as inclusion criteria for research purposes and were not intended for clinical diagnosis, they have become the de facto diagnostic criteria in the clinical setting. It should be noted that the number of tender points that may be active at any one time may vary with time and circumstance.

Wed 5/13/09 I saw Dr. Nemeth my primary because my jaw was hurting like crazy. We both thought it was just Temporomandibular joint disorder. TMJ is an umbrella term covering acute or chronic inflammation of the temporomandibular joint, which connects the mandible to the skull. The disorder and resultant dysfunction can result in significant pain and impairment. We though grinding my teeth at night might be problem so I got a mouth guard and used cold compresses.

Tuesday 5/26/09 I’m back to see Dr. Nemeth because my face had swollen up, the right side much worse then left. Also I had massive increase in pain and impairment of my jaw. By the time I came in the swelling was going down, but still was quite painful. Dr. Nemeth examined my jaw and inside my mouth she noticed the outlet of one of my salivary glands was little inflamed and very tender. Apparently a stolen had formed in the duct and because for 3 days all I saw eating was Popsicles I “sucked” it out.  Dr. nemeth prescribe some antibiotic to make sure it didn’t get infected.  I mention what I had read about Fibromyalgia and how my general body pain and muscle weakness was getting worse in last month. She performed the tender point test on me and said I definitely fit the criteria. But she also ordered up more immunological tests just to check if I’d developed a secondary autoimmune disorder.

  The tests for specific immune illness came back negative but two tests for general inflammation were HIGH. 
My (ESR): 36 MM/HR       Reference Range: 0 -20 MM/HR

Sed rate, or erythrocyte sedimentation rate (ESR), is a blood test that can reveal inflammatory activity in your body. A sed rate test isn’t a stand-alone diagnostic tool, but the result of a sed rate test may help your doctor diagnose or monitor an inflammatory disease.
Red blood cells, or erythrocytes (uh-RITH-ro-sites), are cells that transport oxygen throughout your body. When blood is placed in a glass test tube, as part of a sed rate test, red blood cells gradually settle to the bottom. Inflammation alters certain proteins of red blood cells, causing the cells to clump together. Because these clumps of cells are denser than individual cells, they settle to the bottom relatively quickly.
The sed rate test measures the distance red blood cells fall in a test tube in one hour. The distance indirectly measures the level of inflammation — the further the red blood cells have descended, the greater the inflammatory response of your immune system.

My CRP: 1.2 mg/dl     Reference Range: less than 0.5 mg/dl  

C-Reactive Protein, CRP test is a general test to check for inflammation in the body. It is not a specific test. That means, it can reveal that you have inflammation somewhere in your body, but it cannot pinpoint the exact location.
Your doctor may order this test to:
• Check for flare-ups of inflammatory diseases such as rheumatoid arthritis, lupus, or vasculitis
• Determine if anti-inflammatory medicine is working to treat a disease or condition
However, a low CRP level does not always mean that there is no inflammation present. Levels of CRP may not be increased in people with rheumatoid arthritis and lupus. The reason for this is unknown.
A more sensitive CRP test, called a high-sensitivity C-reactive protein (hs-CRP) assay, is available to determine a person’s risk for heart disease. Many consider a high CRP level to be a risk factor for heart disease. However, it is not known whether CRP is merely a sign of cardiovascular disease or if it actually plays a role in causing heart problems.
Normal Results  
Normal CRP values vary from lab to lab. Generally, there is no CRP detectable in the blood.
Your doctor may also use a highly sensitive test called hs-CRP to help determine your risk of heart disease. According to the American Heart Association:
• You are at low risk of developing cardiovascular disease if your hs-CRP level is lower than 1.0mg/L
• You are at average risk of developing cardiovascular disease if your levels are between 1.0 and 3.0 mg/L
• You are at high risk for cardiovascular disease if your hs-CRP level is higher than 3.0 mg/L

May 31st 2009 we attended my grandmother-in-law, Johanna’s 90th Birthday Party, she is my husband’s last surviving grandparent. She has been very kind and generous to us.

Easter Week

Happy Easter!!

Been busy week.

Tuesday had appointment with my Neurologist, she told Rob & I to get busy making baby(ies). She’s concerned about me being high risk for complications. Also I’m no longer on Pamelor( nortriptyline)is an anxiety/depression medicine also used to treat migraines. I was having Migraines daily for most of last year but am doing much better now. Also Dr.Begum lectured me again on why I’ve not yet had a bariatric surgery.

Wednesday we went grocery shopping for the house & to buy food for Rob’s baptismal reception.

Thursday I got my feet washed by the revered at the Maunday-Thursday service. This was something new to me; it hasn’t been done for many years in our Church. He wanted 12 volunteers to represent the apostles but it was just me and 2 other women. Guess people were afraid to show their feet? Mine where cute though, Rob helped me paint my toe nails.

Friday I cut up all the veggies, fruit, meats & cheeses for the food trays. I also made chocolate candies with Mom. Mom bought a gorgeous Yummy cake from Costco.

Saturday eve was the Holy Saturday service and Rob’s baptism. It went well no major mishaps.  About 30 people attended. It was a very nice service & everybody enjoyed the food.

Today Sunday for Easter Service is when most people showed up at church. The pews were packed. Father Franklin gave a lovely homily.
We had dinner with my parents, my brother Aral, my younger sis Alica and her husband, Justin.
Eldest sis Anne has to work so her fam is not coming but Rob, my Mom and I plan to visit them Monday.
Amber my 2nd elder sis & her fam is in Colorado, Paul’s is getting 2 weeks leave so they will be visiting Michigan later this month. He’s being shipped overseas again for 2 years, I think Afghanistan. Amber might move back to Michigan because its not easy taking care of a 10 month baby and an autistic toddler by herself.

Feb & March

February 3, I had an appointed with Dr. Nemeth usual check up. She gave me ordered to go get bunch of blood work done. Blood counts, liver & kidney panels, Cholesterol levels, insulin & glucose….. I had those done Thursday. All came out fine.

Feb 12th, I got BIG letter packet (dated 2/8) explaining how much retroactive pay I was owed. I’m supposed to get retro pay from April 2006 to Feb 2009, minus attorneys 25%. But then on the 23rd I get a letter (dated 2/18) saying they are only paying me from June 2007? They can’t decide to change it on their own, the judge and court case ruled April 2006-present! Why are they trying to cheat me out of half I am owed!!! like WTF!!! I called left message with my SSI caseworker of course they not call back.

2/24 Today was fat Tuesday, So I ate pancakes & Packzis today but they made me sick.  Maybe it was a good way to start a fast cuz it all came back out real fast lol.
Usually my Dad brother and I have a competition to see who can Fast the longest. Only water is allowed but this year I’m going to be lil healthier go more on restriction than completely stop eating.

Well after talking to SS worker I found out that instead of writing up the paper work properly to say I earned SSI from April 2006 to Feb 2009, and that FIA is taking $8000 from the retroactive pay to reimburse them selves. They just cut 15 months of owed income off the records. Very deceiving and improper book keeping. Which is crap because SSI adjusted/decreased my earned income based on benefits I was receiving from FIA. So it comes out as having the money deducted TWICE from ME!!!  So I ended up with only 25% of my retroactive pay, which is then split into 3 payments given 6 months apart.  Which is not even enough for us to buy a used car like we had hoped.

March 4th I began receiving Social Security disability income, my benefit amount was about half of average benefits because I was to continue receiving the Michigan disability grant through FIA. So it would equal out.  But as soon as my SS benefits began FIA dropped me off the grant and told me I had to get all my income from SSI.  SOoo I filled out all the proper paperwork & dropped it off at the SSI office….

April my only income was $449 in SSI, Still waiting for them to process paper work and make the adjustment. I can’t keep up with monthly bills with only $449! This is is causing me a lot of anxiety.

weight loss

To read in magazines or watch show/series on T.V about other obese people defeating the bulge and joining the ranks of the “thin” is so incredibly frustrating!
Losing weight is a struggle for anyone; dealing with emotional eating, nutritional ignorance, exercise motivation, lack of support, availability and cost of healthier food.
I have mastered most of these obstacles but have not been able to overcome several medical issues including severe Insulin Resistance & pancreatic insufficiency.
2007 I followed a healthy diet and did moderate exercised. My primary physician diagnosed & medicating me for Insulin Resistance & pancreatic insufficiency. That year I made some real progress, I lost 45lbs. 
2008 I continue to follow a healthy diet but had more difficulty because my fiancé (now husband) was often tempting me with “bad” food. He is now trying to be more conscientious. Especially since I’ve learned I’m allergic to Wheat.
Also Despite back injuries & autoimmune pain I increased my exercise and my medication was increase. However I only lost 8 lbs.
I should be happy that at least I ended the year with a loss. But it’s hard not to feel defeated when I have soooooo far to go.

Christmas, New Years and so on

Our family Christmas seemed to lack the cheer and enthusiasm of previous years. But I guess as everyone grows up, moves away and has there own family it becomes a big hassle to get everyone together. Plus it has been an awful year for all of us economically.

Rob & I spent Christmas morning with my family. Mom made a special breakfast of homemade cinnamon rolls, 3 types of sausages & frittatas. Then we ripped into our presents and everybody scattered either to play with new “toys”, to nap or go to work.

Christmas evening we were with Rob’s family. His mother served a turkey breast & a small ham with all the trimmings. Then the unceremonious gift exchange occurred with a notable lack of excitement. Then people went back to watching their T.V. program.

Friday we left to Indiana to visit ailing family with Rob’s mom Anna, sis Danielle, & 2 nieces Jessicca & Marcie. The drive took almost twice as long as expected because of a winter storm & traffic back ups. Anna & Danielle were staying at the Aunts home. I had booked a hotel online, since it had two beds Rob & I agreed to let the nieces stay with us. Then there was a little tiff because our hotel was 45 minutes away and Uncle Pete(who was also visiting) didn’t like having to drive us back and forth. He knew the area very well, Anna was afraid she get lost.  Apparently when we booked out hotel Anna accidentally told us the wrong city. But the hotel would not let us transfer to a closer hotel with out charging a large fee and we were already spending money we didn’t have.

Robert’s maternal grandfather lives with Aunt Genie & Uncle John who takes care of him. Grandpa has pancreatic cancer that has spread to most his other organs. He has has very little time left on this earth. Either though we knew he was ill it was still a shock to see how frail and ravaged his body looked. We received a 2nd shock to learn his aunt is ill too, a virus had attacked and killed part of her brain ( & body) she is super thin but worse she had lost some motor skills and cognitive function. Doctors say her life expectancy has been drastically reduced.

On Sunday we returned to Michigan the weather was much nicer. We stopped for lunch at a nostalgic Silver Dining car “Denny’s” and stopped nearby to check out a candle outlet. Anna & Danielle are candle freaks, lol. They bought quite a few, I just bought 2 from the reduce rack in a scent Rob liked called Candy Starlight. They Smell like cotton candy and have glitter in them.

New Year’s Eve we went to a party at Jakes house. We brought a bag of snacks and unopened bottles liquor & mixer for the drinkers. So I was annoyed when Jake called and Rob agreed ‘we’d” buy Beer for the party. One Rob hasn’t has a job or income in months so he should have asked me 1st, Two we don’t even drink beer, Three I paid for the beer at our last big friend get together. To get there and have them sarcastically rebuke us because they didn’t like the brand of beer, pissed me off! For most the night I was bored as the major entertainment was Rock band 2 on the basement TV or some shoot um up game on upstairs TV. There was also a ping pong table downstairs. Late in the eve or early next morn I was enjoying a hilarious, body attacking game of ping pong with Rob & 2 other guys until someone thought we were having too much fun and pulled my paddle right out of my hand and proceeded to lecture on proper play. Maybe I should have gotten drunk then I might have had more fun.

Rob had his last class on Wednesday. Sheryl a classmate made a cake & the staff bought a cake. I brought a bunch of cookies that disappeared quickly.  Then the staff ordered pizza, but didn’t order quite enough to satisfy the hungry boys. I got 2 pieces because there was one pizza with Olives. Only one classmate would eat olives he had like 4 or more pieces. The receptionist came in after the feeding frenzy. She told me she had ordered Olives because she likes them and thought no one else did, she was surprised to find less then half of the pizza left. People didn’t like cake very much. There was sooo much left; I didn’t want the women to be offended. So I cut 2 pieces from each cake and threw them out so they would think more got eaten.

Because I don’t have insurance I had to cancel my 2 doctor’s appointment for this 1st week of January. Friday I have an appointment at Family Independence Agency(FIA) to beg for them to reinstate my Medicaid. And still no word from Social Security office about when my disability income starts.

My meeting Friday I learned that even though I had received the cancellation letter the FIA social worker had put a hold on my case so I still do have Medicaid coverage, YEAH!!!.

Nov & Dec 2008

Nov 4th , I had an appointment with Dr. Gaetino, my back pain specialist.  He discussed giving me Pain block injections which only last a few days. These are done to test if nerve cauterization will be successful.

Nov 6th, My social security disability income(SSDI) appeal was a success, the Judge over turned the original denial. So when paperwork finally goes through I will be getting a retroactive payment and monthly income around $600. Big chunk of the retro pay goes to the lawyer, then to paying off debt.
When Rob finishes classes in January, the school is helping place him in a job. When this happens I’ll have to go through a re-evaluation and based on the income Rob makes I’ll either have a reduction or a cease in benefits. If he’s bringing in a decent wage that shouldn’t be a big problem.

Nov 12th, I had appointment Clark Eye Center. They did every eye test possible on me said my optic nerves and everything look fine, but my vision did decrease slightly. They gave me a prescription for new glasses but I haven’t been able to buy them yet. I’m hoping SSDI comes through soon so I can do that.

Nov 13th, I had an appointment with Dr. Macon My pulmonologist. He scolded me for not using my CPAP but said my blood pressure was fine and my heart & lungs sound good.

Nov 14th I had an appointment with Dr. Chun my Endocrinologist. He was concerned that my primary had me on such a high dose of Metformin. He also informed me he would be taking an extended leave so I would be seeing his associate from now on.

Nov 18th, I had an appointment with Dr. Gaetino, my back pain specialist.  He gave me the Pain block injections. The pain came back after 2 days but the test was to locate and test if those nerves bundles where the source of my pain.

Nov 21st, was a sad day. The brother of Rob’s best man, Jake committed suicide. He had been suffering major depression for a long time. His wife had taken their children and left him recently. He hadn’t been able to hold a job for some time so he had no income, no medical insurance and wasn’t receiving continuous care or medication.

Nov 27th, was Thanksgiving. We had early dinner and celebration at my parent’s home and then went downriver and had evening celebration with Rob’s family. OMG, Two Dinners with desserts I was so stuffed even though I was trying to only eat a lil at each house.

Friday Nov 28th, was my 32 Birthday. We had a big group of friends get together with us at Buffalo Wild Wings. I was surprised we got all Rob’s guys to come at such short notice but Rob was guilting them into showing up by saying Jake needed cheering. So the evening really wasn’t about me, but I still had fun.

Dec 4th, I had an appointment with Dr. Nemeth, my Primary. We went over recent tests, My HDL- good cholesterol was lil low, only know ways to increase it are exercise, high doses niacin or prescriptions. I agreed to try to exercise more. If it still didn’t improve I will try high dose niacin. We discussed my abdominal discomfort and how nothing physical showed up on any scans so it is likely just a side effect of the Metformin, especially since I’m on such high dose.

Dec 5th, I received a packet from Family Independence Agency (FIA)with forms I had to fill out and request for all kinds of records. Because they are re-evaluating me for Medicaid & the Michigan Disability Grant( $264/month) I had been receiving. If I lose the grant that’s Fine since I’ll be receiving SSDI soon, but I can’t have a lapse in my Medicaid I need to be on lot of medicine and have appointments every month.

Dec 9th, I was at the Pain clinic for my Percutaneous intradiscal radiofrequency thermocoagulation. Otherwise known as nerve cauterization.
The procedure allows the controlled delivery of heat to the vertebral disc via an electrode wire. I was given light sedation intravenously and local anesthetic was injected in multi point over my back. Under fluoroscopic guidance, a hollow needle was inserted into the vertebral disc on both sides of my lower back. The electrode flexible catheter is then inserted into the centre of the nerve nucleus through the needle, slowly heated to 50-80°C and kept at that temperature for 90-360 seconds. This causes the end of the nerve bundles to burn/melt and thus not be able to transmit pain signals.

Dec 9th, I also saw Attorney Gregory Frye about the FIA paper work because I didn’t know if had to do with the SSDI that I am still waiting for. I was also confused on how to fill some of it out, but it wasn’t for SSDI so didn’t want to help.

Dec 14th , 15th, 16th, I called the appointed representative on my FIA paperwork, I kept getting voice mail. I begged for a meeting to help me fill out paperwork, because it was due to be turned in on 15th. They didn’t even call me back until 17th, left a message saying “call me and I can help answer question over the phone” but when I called I got voice mail again. So I just filled it all out as best I knew how and gathered up documents but couldn’t get everything they wanted.

18th I get a letter saying my grant and Medicaid is dropped as of Jan, 1, 2009 because I didn’t file quick enough. So if my SSDI doesn’t “kick in” Jan 1st I have no medical coverage and will have to cancel appointments.

Dec, 19th I had planned to go to FIA in person to drop off my paperwork and hopefully reverse the denial but we got a blizzard last night, my car is buried, we are snowed in.  We are still waiting on a snow plow because we are a low priority back road.

More August, September & October 2008

Medical Stuff:
August 7th, appointment with Dr.Gaetino at the pain clinic.

Aug 13th, I had a MRI of my back, which did show the Lumbar arthritis has worsened, slight bulging of few discs and that I have Spondylolysis a defect/fracture in the pars interarticularis of my 5th lumbar vertebra.

September 2, Dr.Zacks my allergist confirmed from the results of my elimination diet that I am allergic to wheat and a number of food additives.

Sept 4th, appointment Dr. Gaetino tried different form of injection into the piriformis muscles because I was still having a lot of sacral/ butt & leg pain after my previous lumbar steroid injections. He belived the pain might be do to over tense muscles putting pressure on nerve bundles.

October 7th, appointment with Dr. Gaetino again. The piriformis muscles injections gave little relief to my sacral/ butt & leg pain. Because I had previously had a Coccygeal cyst 12 yrs ago. I was sent for a CT scan to see if new one had formed causing this pain. A Coccygeal cyst is a cyst that develops along the tailbone (coccyx) near the cleft of the buttocks.

Oct 13, Appointment Dr. Begum my neurologist. I’d been having increasingly more migraines and more intense ones over last 6 weeks. She belived this was due to the stress of the wedding. So she prescribed me pamelor its antidepressant/anxiety medicine that is also known to decrease stress migraines.

Oct 14th, Ct scan of my spine revealed I have an extra vertebra between the lumbar & sacral regions. Which caused instability in my spine and is the cause of my sacral/ butt & leg pain. Which could be treated by administering nerve blockage injections &/or cauterization of nerve bundles.

Oct 16th has Check up with Dr. Nemeth my internist & primary doctor. She gave me a flu shot and sent me for bunch of test to check my health status and to get closer look at my pelvis organs because I’ve been having an increase in bloating and pain.

October 22nd I had an array of blood tests, pelvic/abdominal x-rays and external & internal pelvic ultrasound.

Personal Stuff:
August 27th, My nephew, Aaron turned 5 years old. He finally was evaluated and has started a therapy program. He was diagnosed with ADHD & Sensory Integration disorder.

The eve of September 2nd Frank Borik, a friend of the family passed away. He had endured a long battle with Parkinsons. He is survived by his wife Joan, Children Frank & Reginald and at least 6 grandchildren.

Sept 27th was Rob & I’s wedding shower thrown by My maid of honor & my mother in law. We had a pretty good time and got some nice gifts for the home and I got to meet a lot more of Rob’s extended family.

August I missed my period but figured it was just stress, Sept I missed it again. As well as having increase sensitivity in my breasts, my neuro mentioning my belly looking bigger even though I’d lost weight since I last saw her, and having weird food cravings. Clued me in, OMG I’m pregnant!! I decided not to tell the family until we had confirmed it with the doctor. But a few days later before I could get into the doctor I started literally gushing blood and having severely intense pelvic/abdominal pain. If you know anything from reading my blog I HATE going to the ER. So I refused to go.*WARNING- GROSS* I continued gushing blood with heavy clots for nearly a week, I bled right through pads and my cloths even though I changed them frequently. For 2 weeks I was sore and cried everyday. It shocked me how affected I was by the loss. I didn’t think I would be so emotional over a miscarriage, especially since I was only 8 weeks pregnant at most.

October 5th was my Bridal Shower hosted by my Maternal Grandmother. She had a cozy tea, punch & finger food gathering in her home. I don’t see my cousins much so it was nice that a few could attend. I also received some nice gifts.

October 20th, appointment with Attorney J. Gregory Frye to give him copies of my recent medical records & discuss my up coming SSDI appeal case on Nov 6 th.

October 23rd was Rehersal Dinner for our wedding. It was a chaotic, noisy, fun, mess.

October 24th Rob & I got married. We and our wedding court wore Renaissances theme attire a few quests dressed up to. The wedding had a few mishaps but nothing major, I was a ball of nerves and on verge of anxiety attack but I settled down once we were at the reception and all formalities where done. Wedding Photos here!

Aug-Sept- Oct were crazy trying to get wedding stuff done, I hand made all the faux floral arrangements for our reception tables, my own bouquet, corsages, boutonnières, as well as putting glass stones and candles in 48 table votives. I also made the jewelry for the bridesmaids. It took me a way long time to do because I could only do lil at a time before I started having serious pain, in hands or back. Most my bridesmaids live in another city so they weren’t easily available to help. But my Mom helped when she got back from visiting my sister in Colorado.
Mom did the bridesmaid bouquets and the Church decorations (pew bows, floral garlands). Rob worked on stationary and candy boxes. He created the designs and wanted elaborate absolute perfection. We had a big hassle getting mailing addresses for our invites and delays on getting stationary printed . So that put us behind schedule and prevented more guests from attending. Plus the stormy weather seemed to deter guest who had confirmed they were attending.
My siblings & parents & Maid of honor helped set up decorations at the Reception Hall, it looked beautiful. We got so many compliments, made it worth the pain, sweat and blood. I also had a lot of compliments on my Wedding dress. Even Father John Franklin was impressed!
I took a chance on ordered my Wedding dress off a website, the company does replication of designer dresses and will customize to fit your measurements. The dress I wanted was by “Forever Yours” in a renaissance style. The original would have cost $1000+ if I could even find one that fit me since it is a discontinued dress. The reproduction only cost $200 and the dress was gorgeous. The fabric was very different from the original but the style and color where close.

June, July , August 08

Sorry, I dropped off the face of the web for so long. So what’s happened in last few months?

Rob finished his classes for baptismal in May but we have yet to set a date to get that done. We finished our Pre-Wedding classes in June and have been busy getting wedding stationary, decorations and such done. Though I was getting very frustrated and lil Bridezilla on him because he wasn’t getting his part done. He insisted he create the stationary and has had a year to work on it but wasn’t getting it done. So this month (August) I had to sit for 6 hours with him to get it finished and will finally get it printed this week, only a month behind schedule. UGH!

June 13-15 Rob and I were in upstate New York. My friend Yukiko was getting married. Yukiko and James were married in a grand Catholic Church with lots of stained class and wood carving was very beautiful. Yukiko wore a kimono to the ceremony and a traditional American wedding dress to the reception. We had a fun time. Rob’s stimulus check was supposed to pay for the trip. We put the trip expenses on my credit card and were going to pay it when we got back home but then the dip$#@! Went and blew the money. You can say I was pissed. I’m making him sell his magic cards to pay me back

July 21st Rob began classes he’s taking an intensive Microsoft certification program. Its quite expensive $28,000 (plus loan interest %) for approximately 6 months but he will have earn 4 Microsoft certifications which will allow him to secure a high paying job. The school also helps find employment. Rob needs to use them now. He’s been out of work with out unemployment for 3 months. HE REALLY NEEDS TO GET A JOB. He has looked but hasn’t been very active in his search, lot people out of work specially in Michigan so you gotta be really assertive. The bills are beginning to accumulate. Just paying for his gas back and forth to class is a lot.

Mom took a trip to Colorado from June 17th to July 28th to help out my sis Amber. Amber gave birth to tiny Lorena May on June 18th by C-section. Her husband Paul is stationed at military base in Co. There 1st Child Aaron is turning 5 August 27th, he finally got in to see a behaviorlist and has been identified as having ADHD and Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction)

Doctor appointments:
Dr. Macon, Pulmologist on May 29th. He wants me to use the CPAP. He was happy I’d lost lil weight but mentioned the Bariatric surgery again.

Dr. Winegarden, Hematologist on June 25th. I had to do a bunch of blood tests but everything was looking pretty stable or unchanged.

Dr. Nemeth, Internist on June 26. She just was going over results from other docs and doing a general check up. Since I had been having a lot of abdomen pain on and off for last 3 month she sent me for abdominal ultrasound.

July 1st was the ultrasound at St. Joseph Mercy, Howell the lost my referral form twice so I had to wait around for another one to be faxed over, then the ultrasound technician was having bad day or something because she was being rude and offish. I’m so not going there again. Result: My gallbladder looks fine but my spleen is a bit enlarged /swollen.

Dr. Begum, Neurologist July 15th. I’m off Neurotin (gabapentin) the back injections are working better for the pain than that medicine.

July 17th HIDA SCAN to get a more in depth look at my gallbladder. The results showed no visible stones and my gallbladder is draining normally. (1st scan last year showed partially blocked drainage)

Dr. Choksi, Endocrinologist on July 24th. She was covering for my usual Endo Dr. Chun who decided to take a sudden vacation.  Renewed meds, did some blood work.

Dr. Nemeth, Internist on July 28th. We went over the results of the past tests and lingering bothersome symptoms. She referred me to an allergist because we believe bedsides the pollen, mold and such I have food allergies.

Dr. Zacks, Allergist on August 6th. He believes I have a wheat allergy and advises me to go on an elimination diet, slowly adding back wheat to see at what amount I have an immune reaction. They did a skin allergy test on my but it came out inconclusive. He gave me a new rescue inhaler and prescribed me nasal spray for sinusitis.

Dr.Gaetino, Pain Clinic on August 7th. I had a series of 4 injections on either side of my lower spine to alleviate pain. He also requested I get an MRI of my low spine. I’ve had increased pain and in a much larger area because I took a hard fall around July 26th, so he wants to check for further damage.

August 2nd Rob accidently hit my head REALLY hard. 2 days later the pain was not going away and I was having dizziness so my primary doctor’s office told me to go into the emergency for a CT scan. Rob skipped class to come with Mom and I. Five hours later they tell me I have a concussion and contusion, give me a prescription for pain meds and send me home.

August 6th met Dr.Zack’s my allergist. He’s having me do a elimination diet to diagnose what foods/additives I am allergic to. He prescribed a nasal spray for my chronic sinusitis.

August 13th I have my low back MRI at MRI of Southfield. Rob has class in Southfield so I scheduled the MRI while he’s in class I wouldn’t have to waste more gas taking another trip out.

April & May 2008

I’ve been extremely stressed and a bit depressed lately. Rob doesn’t have an income right now, mine is barley anything, bills piling up, My wedding looming over my head…. So I’ve been very apathetic about my blogging, I’m long over due for this update.

April 3rd I had made plans to have lunch with my friend who is back living with her parents because she just left her abusive husband and is filing for divorce. I ended up spending all day with her didn’t go home until after 10 pm. I didn’t want to stay that long but her parents went out for the eve and they didn’t want there daughter left alone. I felt somewhat like a babysitter,  lol.

April 9th Rob began his classes for baptism at first he said he was doing it for me but he has actually shown a real interest in learning more about Christianity. Justin my younger sister husband began the classes with Rob but dropped out. When the reverend asked for them to actually attend church it was just too much to ask. 

April 1 Rob and I bought a new queen mattress and frame. Rob took me to a furniture store that was closing. Their mattresses were ½ off, a better price than any where else we’d looked. The bed I had before was an old box spring with a futon mattress which was killing my back.

April 17th I had an appointment with my pulmonologist, he was happy I lost weight. Annoyed I wasn’t using CPAP and told me I had to have another sleep study done.

April 26th Rob’s friend Jake delivered our mattress to us, as Rob had invited bunch of friends to my house for a party. It was not much fun day for me; I had to do all the shopping, set up and cooking. Rob failed to communicate that the majority of his friends were coming an hour later than planned. As a result the hamburgers got dried out as they were left in the oven to keep warm but the brats and sausage come out fine. We had 2 types of beer, rum, vodka, kahlua and lots of mixers and soda pop. His friend Ted brought 3 different schnapps, coconut rum, Jagermeister and RedBull. They were all having fun getting drunk but no one was sick…until Ted decided to be an ass mix up a “graveyard” and the guys all dared Rob to drink it. A grave yard is mix of all the alcohol listed above. Rob was so sick he was thrashing, convulsing, vomiting. I wanted to take him to emergency but I couldn’t carry him and his so called friends were just telling me to leave him in the tub, ASSHOLES. I don’t understand males and the need to hurt one another to increase there own machismo. The majority of the time they’re hurting Rob to do this. 

April 21st Robs mom was back in the hospital, her kidneys were not functioning well and she began to swell up again. She had a port surgically installed and was started on Dialysis.

April 29th I had a check up appointment with my Neurologist. We decided to discontinue use of the Neurotin medication. Now that I am being treated by a pain specialist for my back problems I no longer needed the Neurotin.

May 5th I had my sleep study. There was a new girl working this time and I don’t like her. Its not supposed to hurt when they hook you up to all the electrodes and wires and stuff. She was way too rough. After your hooked up and laid in bed the tech goes to room next door yells for you to move leg, arm, eyes so they can read it on the machine to check its all working. She made air brain mistake of putting the CPAP machine on me and turning it on. As Rob says it sounds like Darth Vadar mask, I could hardly hear her, had to keep yelling “WHAT” and try to just guess what she wanted. It wasn’t a pleasant night of sleep either.

May 11th was Mothers day, Pentecost and the day Rob was officially introduced to the Church congregation. My parents agreed to be Rob’s Sponsors/Godparents so they were there too. (Dad was hobbling on his Crutches because his foot injury was still healing and he had recently injured the knee on the opposite leg.) Since it was Mothers Day there was a big turn out so this made Rob a little more nervous, but his introduction and the few lines he had to say went off with out a hitch. It was a little later in the service there was a problem. Becky, an elder women with rheumatoid fainted and was complaining of severe head pain, so an ambulance was called. The reverend had the congregation say a healing prayer over her and then ambulance arrived, her children, grand children… large family left with here.  Few days later we were notified that she was fine and home.

May 15 Rob got a letter from Unemployment saying FedEx Kinkos contested his unemployment AND wants him to PAY BACK the 2 months(4 paychecks) that he already received. HOW MEAN AND PETTY IS THAT?! he worked for this company 6 years, was dedicated, hard working. SUCH BULL$#@!! 

May 16th my brother Aral turned 30 any one in the acting/theater field in Michigan knows him. He’s worked/working in every theater in Michigan, had commercial or two, a local celebrity.
Also Robs mom returned home from the hospital this day and is off dyalisis now.

May 21st should be Rob’s last Baptismal class and then we will get to schedule the actual baptism ceremony.

May 24th we begin our Church marriage classes; there are three group sessions with five other couples and one private session.

May 29th I have an appointment with my pulmonologist to discuss the results of my sleep study.

Wedding, Birthday, Easter, Anniversary

February 21st Rob put a deposit down and reserved our reception venue. October 24th we will be getting married! Because we booked the week of the bridal show we got a lil discount and upgrades to the bar & coffee station. We are very pleased with that.  
I’ve been stressing over “the dress”. Alfred Angelo makes dresses I like, would fit me and are around $600. I also found a renaissance wedding dress pattern that I love, it fits the theme of our wedding, I could pick the exact fabric I want and should cost less BUT the pattern doesn’t come in a size that will fit me. I’m trying to lose weight but…..I’ll make my decision in July. Either way that will give 3-4 months to shop for or sew the dress.

March 1st was Rob’s 33 birthdays. We went to the bar with Bunch of his friends had a good time. A nice belated birthday present; few days after his Bday Rob starting receiving his unemployment. I was gonna go postal on somebody if they denied him, he’d been working full time + for 6 years going out of his way for this company and they treated him like $#@!

He’s been putting out his resume, got couple hits, a temp job but nothing solid yet. He’s also planning on taking some online courses, start earning a certification/degree.

Sunday the 23rd was Easter which was rather mellow but the usual gathering of family and feasting .

March 25th I had my 6 month check up with the Eye doctor to check my visual field and optic nerve. I hate these appointments cuz they take so long. 20-30 minutes doing the peripheral eye test, then stinging yellow stuff in my eyes so they can numb then and put the pressure device right onto my cornea. Then eye dilating which blinds me, waiting around forever in between each step.  Finally seeing the actually Eye doctor to have him tell me everything looked fine.

Around Wednesday 25th I was getting bloated, dizzy and sore and figured I was just going to have a menstruation soon. These symptoms continued to increase over the next few days. On Saturday eve I began to have right upper quadrant pain in my abdomen and sever chills sweats, shaking and pain lots of pain. In my back, head, & joints a burning ache, in my side a stabbing pain. I was have a full on gallbladder attack AGAIN.
My body was acting so violently that I was visibly shaking and nauseas from the pain. I had been on the couch wrapped in a couple blankets with hot tea but couldn’t get warm, around 11pm I put on 2 pair of sweatpants, 2 shirts crawled into bed with 2 blanket & a comforter and a cat on my head but I was still cold. About an hour later I began heavy sweating but didn’t finally “warm up” until 7 am Sunday & I got up used the bathroom kicked off a pair of sweatpants and finally slept for couple hours until I got up around 9:30am. For Monday, Tuesday, Wednesday I’m still a little dizzy, sore and nauseas. I’ve eating lot of popsicles cuz I’m not tolerating much food but doing ok. And rub salt into a wound I did start my period Wed so I’m having back and belly cramps on top of it.

April 1st “April Fools Day” was my parents Anniversary. They celebrated by having there taxes done and going out to dinner. 

Endo & ice slick

Friday Feb 15th I had a check up with My Endocrinologist, Dr. Chun nothing much eventful. The took my vitals weight, pulse.I’ve lost another 3 lbs. 3lbs lost this year so far. 45lbs lost in 2007. (48 total) My blood pressure was 131/92 not “optimal” but good specially since I’m not taking Blood pressure medicine anymore.
My insurance quit covering the Altace when 2008 hit. My Primary, Dr. Nemeth tried me on Lisinopril but it was giving me violently painful migraines. I say violent cuz it hurt so bad I wanted to punch anyone who touched me.   So I decided to not take any BP med see if I can maintain a decent BP on my own.
Dr. Chun’s keeping me on the same dose of Spironolactone for another 4 months, he had planned on decreasing it but since its the only medicine that has been effective at pulling fluid out of my deep tissue my Neuro requested I stay on a high dose to see if it would improve my Intercranial hypertension. He sent me for some blood work to monitor my kidney and liver function.

Sunday Feb 17th Robert & I had planned to go to a Bridal show but freezing rain caused the snow to melt into ice slick. We attempted to get out but just did circles and slid around the road. Lil scary, no damage, got the car back to the house. The main roads are likely fine its just getting off our dirt back road thats always a problem. The township no longer provides dirt barrels, nor do they salt/sand/scrape the road unless multiple request are sent in by the school bus drivers. 

FIRED!

Monday Feb. 11th, Rob went back to work today and was FIRED. It wasn’t too much of a surprise the Manager Patrick had been harassing Rob and trying to force Rob to quit since Patrick got hired. They had been pushing out “senior” staff and hiring in young college grads.
This of course is going to make life a lot more difficult, but one good thing was we did update Rob’s resume this past week. Hopefully he can find a better job soon.
This does cause a lot of (extra) stress, maybe we’ll just have to put the wedding off for another year.

Vacation

This past week Jan 31st-Feb 9th Rob had off on vacation. Rob spent most of it here relaxing and watching episodes of Babalon 5. I’ve now seen most of seasons 1, 2 ,3 and the beginning of 4. He was scheduled to work Valentines Day so Friday night we booked a Jacuzzi room at the Ramada, Taylor MI. It was fun but not as much as we had hoped. I had booked our room on the phone. Check in is 3pm, we got there at 3:30 and still had to wait half an hour for them to get out room ready. We finally get to our room and it was not the one we booked. So we had to go back to the front desk get that straightened out. I was dismayed that there was no mini-fridge!? You’d think for $160 a night they’d give you a mini-fridge, but made do by filling the sink with ice to keep our beverages cold. The tub Jacuzzi tub was big but so loud that we couldn’t hear the TV and we think the neighbors might have banged on the wall in complaint, LOL. So we ended up just sitting in “hot tub” of water with no jets. Later when we got out, it was chilly we turned up the thermostat but the room would not warm up and the heater made bang noise every time it turned off and on. Rob can sleep through anything but it kept waking me. And around 4:30am some Alarm? Or loud noise went off for a few minutes in the hall. I was startled and thought it was a fire alarm but noticed the Alarm light/siren in our room was not going off. I heard no further commotion so I tried to go back to sleep.  We are defiantly not going there again.

Mom & Dad are on Vacation in Florida they left on Feb7th. Enjoy that Sunshine.

Crystal Gardens & Neuro

Sunday February 3rd (Super Bowl) was the Crystal Gardens Bridal Show. Rob, Mom and I went. The facility is very pretty chandeliers and all but I wasn’t impressed with the food, staff or atmosphere, So many of the people that attended where rude and uppity.
The “Prizes” were just upgrades or discounts for people who had already booked with the facility. Where is the incentive for new customers?  Also the master of ceremony/ DJ was annoying and offensive.  If I hadn’t already made my mind up to use the Barnstormers facility I was defiantly sure now.

Tue Feb. 5th was my appointment with my Neurologist. She just discussed my last Lumbar puncture, how my intracranial pressure is still too high. That rapid weight loss/surgery is my best option. She was Pleased I had lost over 40+ lbs last year but it’s not enough. She also wants me to ask my Endocrinologist about increasing my spironolactone even though I’m on quite a high dose but it’s the only diuretic medicine I have been able to tolerate and she hopes an increase in this medicine would decrease my intracranial pressure.

Pain Clinic

Tue Jan 22nd I was scheduled to return to the Pain clinic to have something done about my lower back pain. The secretary forgot to mention when I made the appointment that there is two (2) offices. So I showed up at the Brighton office where I’d been treated prior and it wasn’t even open. So I had to find someone in the hospital who had a number I could call. I was already late there was no way I could make it out to Brighton so I rescheduled for Friday at the Brighton office.
On Jan 25th, I return to Brighton Pain clinic Again. All starts out well. I do my check in paperwork they get me prepped to have injections in my spine. Then the doctor tells me that since I’ve not had a menstruation in almost a year they would like me to have a pregnancy test because the chemical(s) used in the injections is highly toxic to a fetus. Ok, fine. He asked me if I wanted any other tests done I said might as well do kidney and liver metabolic tests too.
Off to the Lab. I go to the Lab desk sign-in and try to hand my form to a receptionist. She was on the computer, gave me a waiving hand signal to go sit down until called. So a ½ hour later I’m on my 2nd magazine and notice quite a few people who checked in after me had already gotten there blood taken. So I go up to the desk to ask what’s going on. I notice the sign in sheet had been flipped to a new page. My name had been at the bottom of the 1st page. When they flipped the page for new people to sign in they forgot I was at the bottom of the 1st list. The receptionist was very apologetic and a few minutes later I finally got called, had my blood drawn and peed in my lil cup.

Mon Jan 28th I once again returned to the Brighton Pain clinic. I did not need them to tell me I was NOT pregnant because miracles or miracles I had begun menstruating that day. The last time I had a menstruation was February 2007.
So I got prepped again down to undies and hospital gown then was taken to the procedure room. I had to lie on my belly on a hard flat table. Which made it difficult for me to breathe, my ball bladder/liver or something is swollen and was pressing on my lungs causing pain and shortness of breathe. This is turn made getting the injections in my lower spine more painful because I couldn’t do my meditative breathing.
My back was sore for about a week but is doing pretty good now. No more injection site pain and the deeper bone ache has decreased quite a bit.