Posted on Friday, August 31, 2007 at 11:50 PM in
The Dream theater concert was fun. Rob and I rode with Ted and Matt, in Teds HUGE truck. I had to have Rob give me a push up I couldn’t even reach the grab bar on my own.
We got great parking spot right across the street from the theatre even though it cost $20, but that parking lot is disabled parking only and I happen to have a disabled car tag. 
None of us had eaten so we went to an over priced not so fabulous Italian restaurant cuz all the other pub and eatery’s were packed, with lines out the door Because there was a Tiger double header going on as well as the concert.
Short stick boy matt snuck into the front of theconcert entry line while the rest of us had to walk 4 blocks to the end. It took ½ hr to get to the front doors. Then men and women were separated into different entryways for security check. Rob had my digestive enzymes in his pocket so he got a bit hassled and delayed further because it was a prescription bottle without his name. Security had no clue that Pancrease can’t get you high even if you take the whole bottle, probably just give a person bad tummy ache and constipation.
We missed the 1st opening band, heard part of 2nd not very impressed by it; the 3rd was good but can’t remember names of them. My PseudoTumor Cerebri really affecting my memory lately.
During the Main act, Dream Theatre we tried to find a free chair. It was a “standing room’ event, unless you paid extra for a balcony seat. There were some chairs and tables on 3rd tier of floor level, trio 2 fem & older guy had an extra chair at there table but refused to let me use it cuz they wanted it for there purses. All night these people were obnoxious and security had to come twice “reprimand” them. Just @$$*& who wanted a table to hold there alcoholic beverages. They were very able bodied, one women spent most the show standing on her chair thrashing about in “dance”.
After I asked all people with open chairs around us and none would share, Rob went out and asked security to help. Security went to a women at a table with 4 bar stools, 3 were empty, Security asked” is anyone sitting here” women said “yes I’m saving them”, security “Are they here RIGHT NOW”, Women “Uhh no”. So Security grabbed one and brought it to me. A lil later someone behind us gave one to Rob too.
August 23rd rheumatologist, Dr. Dowd his usual self, nagging me about stricter dieting and prescribed me Darvocet. I took one pill didn’t like it. It made my joint pain worse and gave me a hang overlike headache.
It’s so insane that my insurance will not let me have 4 tramdol a day but let’s me have 2 tram, 2 darv a day. I JUST WANT THE TRAMADOL, I don’t want any narcotic Darvocet.
Aug 30th I saw my neurologist, Dr. Begum. She gave me a referral for another peripheral eye exam To check if the excess pressure on my optic nerves (created by the PseudoTumor Cerebi) has caused further damage. She also wrote in the referral that if there is evidence of more optic nerve damage I am to get an optic nerve sheath fenestration. She was also very irritated and upset that I’ve not had a bariatric procedure or even begun the approval process. She is ADAMENT that I have this done immediately because in all her other patients who had PTC and were obese when they had a bariatric procedure the rabid weight loss improved or completely resolved the PTC issues. I told her that my primary Dr. Nemeth was holding me up because her concerns about me undergoing surgery and Begum told me I must relay Dr. Nemeth the severity my obesity is having on my vision as well as my over all health. We discussed Lap-band vs. Full gastric Bypass and how i prefer the less invasive Lap-band and more likley get Dr. Nemeth on board with the less invasive procedure. Dr.Begum said none of her patients have had a Lap-bad so she was skeptical of its effectivness.
August 31st Friday Aral came to visit he returned to Michigan on Tuesday. Wednesday he was in the clinic getting antibiotics. Guess he picked up a bug in Cali and time change/weather change made it go monster on him. Him and Lynns, his girlfriend came over for dinner. Aral showed us some clips of film projects he’s been in lately. He grabbed an old dresser and box of stuff he’d left, said they come back for the rest later time. Him and Lynn have gotten an apartment together near Lansing. Aral will be staying in Michigan for the rest of the year, because he’s got a contract with a theatre for the winter season, Though he may take 1 or 2 short trips back to Cali for film projects with the Frog Island crew.
Posted on Sunday, August 12, 2007 at 08:53 PM in
Saturday the 11th was a gathering of the clan, a big party in Honor of my Grandmother Grumley (G.G). She will be 90 years old this Monday august 13th.
It was nice, lovely vases of roses on all the tables, the family tree Quilt my older sister Amber made was displayed on a wall, next a table displaying photos of my grandmother, deceased grandfather and all there children and the scrap book most of the families contributed too.
Too not much surprise I got ill (vertigo,migraine, heat sickness) so my younger sister Alica and her husband Justin offered to drive me home early.
I had ridden to the party with my eldest sister Anne, bro-in-law Les and niece Courtney. After the party they were going to visit his family and stay the night. I was supposed to stay the night in a hotel and go home with my parents. It all worked out fine. Alica & Justin were bored and wanted to leave anyway and my parents got a king suite with Jacuzzi tub all to themselves.
Mom had order a senior discount 1st floor non smoking 2 bed room, but when they got to the hotel the online company had booked them in a smoking 2nd floor room in a hotel with NO elevator. Mom and Dad both have problems with there joints so they were quite irate, but still polite. The manager said only 1st floor left was the King Suite and would give to them for $85, which was $10 more than they were originally paying but $65 less than the usual charge for that room($150). One king size bed, a sitting alcove with a pull out couch, a kitchenette (microwave, mini fridge, sink) a 2 person Jacuzzi and double size bathroom.
Sunday evening we had a lil cake, ice cream and presents for my niece who is turning 17 on Monday the 13th, same birthday as G.G. Anne & Les(her parents) gave her Amazon.com gift card, Mom & Dad(her Grandparents) gave her a borders gift card, my Alica & Justin gave her a card with lil cash earlier, I bougth her a Electro Plasma Lava Lamp, a hematite-turquoise necklace and a lil cash, Amber called and said she had shipped Courtney’s gift(s) they’d be here Monday.
Monday I will be riding along with Rob and a couple of his friends to the Dream Theatre Concert. Its in Detroit at the State Theatre. Dream Theater is an american progressive metal band comprised of James LaBrie-vocalist, John Petrucci-guitarist , Jordan Rudess-Keyboard, John Myung-bassist, and Mike Portnoy- drummer. And happens to be one of Rob’s fav bands 
Posted on Sunday, July 29, 2007 at 11:05 PM in
Monday July 16th I had a check up with my Internist primary care physician, Dr Nemeth. She okayed me to go back on Metformin, discussed staying on the current dose of pancreas Enzyme supplements, 10 MT. she shot down my discussion of Lap-Band and told me to continue trying to lose weight with enzymes, dieting and exercise for indefinite number of months, then we would discuss it.
On Thursday afternoon I went into Brighton to run some errands, a heavy storm hit while I was in my bank I waited maybe 10 minutes as the banks power flickered on and off, the storm let up, so I left for home. I spent an hour driving around, main roads, back roads; every road home was blocked by down trees, limbs, power lines. I ended up driving back into town and going into Meijer which was running on back up generator power. I called home on a pay phone. Mom answered and said we lost power at home and to just chill at meijer till the roads clear, then the phone hung up on me even though I put in enough coins for 30 minutes. So I spent a couple hours at Meijer. I had some dinner, walked around, bought a case of bottle water and headed back home. I was able to make it through this time though traffic was way backed up and the main road was still half blocked. Cars had to take turns going thru one at a time.
The morning of Friday 20th I got up early. Mom had cooked up a big breakfast; bacon, eggs and pancakes because she was trying to use up food in the fridge before it spoiled. After breakfast I left for Robs (and stayed with him until Wednesday morning.)
Saturday Mom caleld me and tole me she had left to grandmas, that my sis, her hubby and daughter went to the in-laws and dad stayed home to watch over the house and cats.
Our power finally returned on Sunday morning.
While with Rob, did some thrift store shopping, went to the Mall with his neices checked out the Harry Potter frenzy at the Border “party” for last book coming out and Saw the Transformers movie.
Friday the 27th I finally got to see an endocrinologist. On 18th the U of M hospital left a message and told me they were canceling my appointment which I had made 3-4 months ago. But Wednesday they called again and said that my appointment was reinstated. So…
Tae-Hwa Chun is my Endo, seems pretty nice. Was a basic meet & greet, review medical history appointment. He also ordered a 24 hour urine collection test and bunch of blood labs. I did the urine collection Sunday-Monday and am going to the lab Monday to drop off the urine and get the blood draws. The lab will do all their tests on it and in 2 months I’ll see Dr. Chun to discuss the results.
Posted on Thursday, July 12, 2007 at 12:12 AM in
Not much been going on last week and half, July 4-12. I Went and visited Rob Thursday- Sunday. Saturday I learned my pre-paid tracfone has text message ability because Aral sent me a few text messages checking up on me. Tuesday Mom came home from N.carolina.
Wednesday I had another blood draw. To check my kidney function again before I am allowed to resume taking Metformin. Which I have definitely notice bad difference not taking it, more cravings, hypoglycemia and over eating. Afterwards Mom and I went shopping at Big Lot. I hadn’t intended buying much at all but found lot of good food/cooking items that fit low carb & low cat diet. Most of it I am sending to Aral along with items Mom grabbed for him too. He’s had some issues with re-gaining weight since moving to Cali, being struggling actor and all, eating CHEAP processed foods. With our genetics/metabolism that crap makes us fat. Image is EVERYTHING in Hollywood so being chubby would likely prevent him from getting some gigs.
We also went to new T.J. Max that opened recently. I used a gift card and bought big tan & red purse of woven straw and bamboo. It was half price and perfect for beach or park. I’m using it as picnic “basket” Friday because Rob, Melissa, her date Aaron and I are going to the park to watch fireworks. They also had some really nice quality bamboo cutting boards on sale, I bought one of those too.
Mom bought some really nice whole fruit low sugar preserves, blueberry & fig. We tried the Blueberry at dinner it’s wonderful. Dinner was whole wheat with splenda waffles, eggs & bacon. She bought some real Maple syrup for dad. She bought a new runner rug for the kitchen green & tan, very pretty and it feels nice on bare feet and a new 3 piece set of decorative towels for her bathroom. I think thats it, yeh not much to talk about. Rambling on, don’t think web word cares what we purchased in out lil shopping spree. LOL
But anyway doin allright. Its been a pretty good week. Abdominal pain is gone, tolerating food better, able take my many many vitamins & supplements, joint pain not so bad, had lil more energy and my moods been pretty good.
Posted on Tuesday, July 3, 2007 at 06:23 PM in
Friday June 22nd I went down to see Rob, that evening I had severe acute attack of pancreatitis? It is one of the worst pains (& inflammation) I ever felt, so severe in fact that started having symptoms of going into shock. Such as an altered mental state, cold clammy mottled skin, drop in body temperature (I was shivering and cuddled in blankets despite the nearly 90 degree weather.) and rapid respirations. I should have gone to hospital but I don’t know ones out there and was more concerned about surviving and having to a pay hospital bill than dieing. Also was kind of out of my mind in pain and stuff so I was not thinking right. I told Rob I didn’t want to go and he is clueless about med stuff so he didn’t know I was “shocky”. Though my mom & sister yelled at him later saying he should have taken me anywayAfter 8hrs of flushing my body with probably 3 liter of warm tea the pain eased enough for me to lie down and rest.
Monday June 25th I Called my doc office they said just take pain pills and drink lots of fluids and I had no food limitation and was informed my abdominal CT scan was schedules for July 2nd. But any time I moved/walked much or I tried to eat I would be in severe pain again for 6-12 hrs and food would come out quickly one end or the other
25th-28th the constant pain subsided gradually but again I had severe pain and digestive distress when any food, even some meds or vitamins where ingested.
So I called my Doc Office again and they told me to go on clear liquids, soft foods (like jello) and if my pain got worse go to hospital. If I did go to hospital they will give better pain meds but likely also put feeding tube down my throat. No Thanks!
29th- July 3rd days the pain continues to gradually decrease and I am now able to tolerate some solid foods.
Monday July 2nd I went into the hospital at noon, sat in the waiting room reading magazine for 2 hours. At the beginning of each hour I was handing a drink with barium dye. This will light up my digestive tract on the scan. Then around 2 am I’m taken to the CT room. I am asked to sign a waiver and acknowledge that I stopped taking my Metformin 2 days prior and would not take it to days after the procedure. Also I was informed to call my doctor before starting the Metformin again incase she wanted to do blood tests to check my kidney function again. The Injected dye can cause a strain on kidneys, which is compounded by the use of Metformin. (Great watch out for kidney failure.) I was laid out on the scan table, punctured in both arms because the 1st try in my right arm missed. Then they injected me with the Iodine dye to light up my blood vessels.
Today Tuesday 3rd I’m still sore, my stomach kind queasy ,still having some diarrhea and not sleeping well but doing all right, much better than when it started.. Now I’m just waiting for the results to see if they can figure anything out anything new.
Lack of sleep made me forget I was supposed to be at Joan’s at 11 am today but I called her and ended up coming in at a later time. The only physical thing she had me do was walk Twinkles (her dog) which I thought I was ok doing but it made me REALLY SORE.
Been researching a diet for a healthy pancreases and I am back to similar one my Rheumatologist recommends. These type of Diets goby many names but the basic principle are:
No processed foods, starches(except rice/oat), sugars, dairy, or caffeine.
Limit rice, legumes, fruit and LEAN red meat, eggs. (Eliminate oats if you have gluten sensitivity/intolerance, because unless specified the are ground on the same mill at wheat and contaminated with wheat gluten.)
Veggies, lots and lots of veggies. The more organic, fresh, and raw you eat them the better.
Fish &poultry 1/3 portion to veggies.
Not something easy to stick to in this over processed, carbs every where, junk food world, but I do know when I cut lot of the “crap” out I feel better and I’m trying if gradually to work toward vegetable dominated diet.
Posted on Friday, June 22, 2007 at 01:15 AM in
Today Thursday June 21st at 830 am I had a check up with Dr. Nemeth my internist, primary care physician. We discussed the pancreatic enzymes I have been taking and how they have made a difference. I seem to be absorbing my food better, less diarrhea and I’m losing a little weight. She bumped my prescription up from 8 MT to 10 MT (10,000 unit’s lipase, protease, and amylase) because food is still traveling too fast through my digestive system I am not yet having “normal” bowel movements.
I asked her why I developed this enzyme deficiency. She said from my past medical history it seems I’ve had chronic or recurring pancreatic problem for many, many years. Which can be causes my infection, certain medications, high triglycerides, gallstones etc. Because my pancreatitis was ignored or misdiagnosed I never received proper treated which resulted in scaring of the pancreas. Scaring, causes loss of function and repeated scaring causes more and more damage. So that’s why I am to the point now where I can’t digest food at all and must take pills that contains digestive enzymes.
I have been having more pain in my lower abdomen, that started as just discomfort about 2 years ago after my appendectomy but as I gained weight and had all these other problems its gotten worse. So she is sending me for a pelvic and Abdomen CT scan to check for hernia(s), excess scar tissue, blockage, twisting of the intestine and just to check all rest of my abdominal organs out.
We also discussed the adverse reactions I have been having with the Lasix and both believe it’s due to an electrolyte imbalance caused by the medicine. Also its possible Lasix could be causing a current bout of pancreatitis. So Dr.Nemeth prescribed a second diuretic, Spironolactone, which is a potassium sparing type and should balance the negative side effects of the lasix.
But to be safe she sent me to the hospital blood lab to have a whole bunch of tests done to check my kidney, liver function, electrolytes and some other things.
We also talked about how my seasonal allergies have gotten a lot worse; OTC Claritin is not effective so she prescribed me Zyrtec.
She checked the lymphedema in my legs and feet and was dismayed that the medical supply company did not give me my compression stockings. So she asked me to call them, ask why I was denied and to have them contact her with the necessary info to get it approved.
When I got home form the hospital lab and dropping off my new prescriptions I called medical supply and the receptionist was not so apologetic when she said, oh we seem to have set it aside and lost it. You WERE APPROVED but that was last month we have to call and see if we can get it re-approved for this month. We’ll call you right back today.
I was supposed to work for Joan today at 11am but had to call off because my doctor anted me to get the blood tests right away. When I got home around noon I called Joan to see if she still wanted me to work, but there was no answer most likely her and frank went to the senior center for lunch. I was going to call her again but while I was waiting for the Medical supply to call me back and her to get home I was getting really nauseas and dizzy so I lay down and passed out. When I checked the answering machine later still no call from Medical supply co. 
So I need to call and bug them again tomorrow morning.
Posted on Friday, June 15, 2007 at 01:15 AM in
In this century, it is less likely than in the past that people will hear a shockingly sexist remark in the workplace, a blatantly racist comment on TV, or a pointedly anti-Semitic statement anywhere in a public forum. This is a wonderful statement on the progress that has been made since the dark days of the turn of the last century when such comments were commonplace and acceptable. In fact, between political correctness, dawning rationality, and a litigious society, there seem to be few prejudices left that are considered socially acceptable to act upon.
Of those remaining biases, fat bias is perhaps the most prominently featured in media, work, and social life in the U.S. The size, shape, romantic prospects, and eating habits of obese people are the focus of many a comedy sketch and movie plot (Shallow Hall, Date Movie, Norbit), and they are a source of insult and torment on the playground and in the boardroom. This phenomenon has been so widespread that prejudice against obese people has been called “the last socially acceptable form of prejudice” by some scholars.
Weight Stigma may come in several forms, including verbal types of bias (such as ridicule, teasing, insults, stereotypes, derogatory names, or offensive language), physical stigma (such as touching, grabbing, or other aggressive behaviors), or other barriers and obstacles due to weight (such as medical equipment that is too small for obese patients, chairs or seats in public venues which do not accommodate obese persons, or stores which do not carry clothing in large sizes). In an extreme form, stigma can result in both subtle and overt forms of discrimination, such as employment discrimination where an obese employee is denied a position or promotion due to his or her appearance, despite being appropriately qualified.
In a society obsessed with unrealistic ideals of how we should look, overweight job applicants have an especially tough time breaking into the job market.
(one of)My stories of prejudice in the workplace, which may sound familiar to many obese individuals…
I applied online for a job. The company replies positively to my application by asking for a more detailed resume. Then, I receives an enthusiastic phone call, telling me “you are perfect for the position” and would I come in for an interview. It’s clear from the tone of the call and various other hints dropped by the caller that the interview is really just a formality, that I am clearly the best qualified candidate.
But all this changes come the day of the interview. The members of the interview panel refuse to meet my eye or give me disgusted looks when they think I am not looking. The questions they ask are brief. They shuffle and fidget when I speaks, act bored and uninterested in my responses. It’s obvious they’re simply going through the motions. When I leave only half the panel make an attempt to shake my hand and thank me with enthusiasm bordering on relief. A week later I do a follow up call and am “regretfully” informing that I was not suitable for the position. I was not surprised. I’ve gone through this charade a couple dozen times before. 
Prejudices about obese people represent a very widespread kind of cultural racism based on a range of wrong stereotyped beliefs that are deeply rooted in Western cultures. Professors, business people, nurses and doctors allow these beliefs to affect there judgment even though they are highly educated and should know better.
Experimental studies have found that when a resume is accompanied by a picture or video of an overweight person (compared to an “average” weight person), the overweight applicant is rated more negatively and is less likely to be hired. Other research shows that overweight employees are ascribed multiple negative stereotypes including being lazy, sloppy, less competent, lacking in self-discipline, disagreeable, less conscientious, and poor role models. In addition, overweight employees may suffer wage penalties, as they tend to be paid less for the same jobs, are more likely to have lower paying jobs, and are less likely to get promoted than thin people with the same qualifications.
In school settings, students who are overweight or obese can face harassment and ridicule from peers, as well as negative attitudes from teachers and other educators. At the college level, some research shows that qualified overweight students, particularly females, are less likely to be accepted to college than their normal weight peers.
In medical facilities, biased attitudes toward obese patients have been documented among physicians, nurses, psychologists, dieticians, and medical students, and include perceptions that obese patients are unintelligent, unsuccessful, weak-willed, unpleasant, overindulgent, and lazy. One alarming consequence of negative attitudes by health care professionals is that obese patients may avoid obtaining medical care because of these negative experiences. Research has demonstrated that heavier patients are more likely to cancel and delay appointments and preventive health care services, particularly among women who are overweight or obese. A lot of obese people are too fat also for medical science: to be effectively contained by an operating bed, to stay on a common hospital wheelchair without being jammed inside, to enter a tunnel of an appliance for tomography CAT and NMR.
Such discrimination within the medical community is particularly damaging due to the health effects of obesity and a subsequent increased need for medical attention. The well-known increased incidence of chronic progressive diseases such as diabetes mellitus, osteoarthritis, and cardiovascular disease in obese people makes delays and avoidance of care dangerous. Obesity-related conditions result in 300,000 deaths per year in the U.S. according to the American Heart Association, many of which could be prevented with weight loss and proper medical management. The inadequate treatment of these diseases also adds a significant burden on the health care system. The social and fiscal costs of obesity on society--and on the individual--are enormous, and these costs are compounded by negative attitudes toward obese people among health care workers.
Scientific research has shown the falseness of these prejudices. But they are beliefs that are so ingrained in our society that even if (when) obesity reaches a global epidemic level the world will continue to do its best to make obese people’s life difficult.
Evolution seems to have ‘selected’ people that had chosen fat and energetic food; in our origin it was useful for the survival of people capable of storing calories to face famine situations. Because of our ancestors need to survive starvation we now carry these genes that promote fat/energy storage.
With the technologic automated age, developed countries have 24/7 access to an over abundance of food, have decreased daily energy output and exercise has become for many people that live in Western countries optional or a luxury. Nowadays one American out of two is considered overweight (in 1950 it was one out of four).
Prejudice is not a useful too to tackle this problem and miraculous pills produced in recent years by pharmaceutical companies do not seem to be giving lasting benefits of even short term benefits comparable to their side effects. Therefore research devoted to studying genes that control lipid metabolism and fat mass are more beneficial.
In the meantime the only thing that seems to work is getting used to balanced nutrition and a regular routine of physical activity [according to the American National Institute of Health 30 minutes of moderate exercise a day should be enough.]
Which is easier said than done, you must change your whole lifestyle, resist temptations and defy (unintentional) sabotage by family, friends or loved ones who don’t support your healthier life style. It’s also difficult for people with emotional eating/ food addictions. For these individuals it’s not just a matter of a “diet” but they need a whole program to deal with their underlying emotional issues and be taught healthy coping methods to stop their self medicating with food. It is a constant and continuous task but one with great reward, a healthy body and long life.
Continued...
Posted on Thursday, June 14, 2007 at 01:50 AM in
So what’s been happening this June?
June 1st was my sister, Amber 32 birthday, I sent her some gifts and card with lil money.
But she was rather depressed not having anyone to really celebrate with, isolated in rat hole of military base in N. Carolina.
On the 7th I totally spaced out and missed a doctor’s appointment. I was to see Dr. Nemeth who is my internist and my primary care physician. So I had to reschedule that and owe $35 no show fee 
:O(
The Lasix diuretic my neurologist put me on is ... unpleasant, no mater how I rearrange my other medicines, supplements and meals, I still have side effects. Next month I have to endure another lumbar puncture to find out if the Lasix is even working on reducing the pressure on my brain. 
But My health has improved a little bit with the pancreatic enzymes, I’m having more regular bowel movements and have lost a little weight, 4lbs in the last 4 weeks.
My Neurologist, Gastroenterologist, and Pulmonologist are very adamant and insistent that I have a bariatic procedure. My Primary doctor, hematologist & rheumatologist are a little more hesitant but will support me.
My Neuro would prefer I get total gastric bypass, but I am not keen on having my stomach cut up and 10+/- feet of intestine removed and rerouted, especially when I already have absorption and digestive problems. I want a LapBand procedure.
I’ve been trying to find out if there is a surgeon/clinic in Michigan that will accept my insurance and perform a LapBand procedure on me. Barix Clinic denied me and I’m looking into the U of M Bariatric program but it doesn’t appear promising.
I found a website today obesityhelp with resources and support for obese individuals. It’s a place to learn what you need to know about Gastric Bypass, LAP-BAND and non-surgical weight loss solutions so you can make the health decisions that are right for you and a support network to share your experiences and resources with others, and get the answers to your questions by communicating with other members.
Maybe someone on there can give me a referral to a surgeon or hospital?
In other news
I’ve not had a period in like 4 + months but still going through hormonal fluctuations every 6 weeks and having severe depression, anxiety, tension, irritability and moodiness, self aggression, loss of energy, bloat, breast tenderness, increase pain, Intense food cravings, increase appetite…
I think not having actual full and complete menstrual cycle is causing me to have PMDD.
Beginning of Last week I was all excited organizing info on dresses, reception sites, flowers etc., reading wedding planner book and joyously thinking about my future and my wedding.
This week I just feel like staying in bed and/or avoiding people. I feel hopelessly depressed and have suicidal thoughts. I cry or get angry to point of wanting to break or cut something over stupid nothings.(Thats why I hide cuz don’t want my family to see me this way) I have masochistic, self mutilating thoughts often during these times and I have hurt myself in the past but currently I am using SI coping methods and pretty much controlling my self injuring behavior. I keep craving “bad” foods and feel unsatisfied with normal adequate portions even appetite suppressants are not working. It’s extremely difficult dealing with this cyclic hormonal induced assault along with all my other medical/financial problems. Even knowing its coming doesn’t help because there nothing I know to do to allevaite all the symptoms. It’s hard on Rob too because he wants to “fix” me and make me feel better.
It would be fabulous if the Endocrinologist I see next month could put a stop to this. 
Posted on Monday, June 4, 2007 at 01:40 PM in
It’s been forever since I blogged I’v just been uninspired, moody..... 
So what’s been going on?
May 3rd I started on quarter doses of Diamox. (250mg tablet) but even at that low dose I was experiencing all the same debilitating negative side effects; Intense back pain, muscle weakness, sluggish, achy all over, Pins and needles tingling in my feet hands, blurred vision, vertigo and Bad mouth/breath taste, so after 3 days I quit taking it.
I also started the Pancreatic Enzymes on May 3rd.They do seems to be working some. I’m still having very few “normal” bowel movements but I am having fewer diarrheas. 
May 10th I was at the Saint Joseph mercy hospital in Howell for my follow up with the diabetic nutrition/health program.
The Nurse was looking over my medical files and confused. She remarked my blood test show I don’t have diabetes even though I do have lot of other problems. I said I know but maybe Dr. Nemeth thought a nutrition program would help me get my insulin lower to lose weight. Then she checked my feet which is just part of routine she has to go through, cuz diabetics often have problems with nerve loss or skin on there feet. Since I was already there she figured she do it.
Then I was sent off the dietician, this was a younger women than the one I met before. She spent maybe 5 min going over stuff with me, saying same thing, you’re not diabetic? But Oh you have way too many health problems for some one your age! If I got $10 every time someone said that to me I’ve have all my medical bills payed off LOL.
When I was leaving the older dieticians saw me in the hall and stopped to ask how I was, the younger dietician and the nurse both came over too. I told them about being on pancreatic enzymes; they wanted to see the bottle which was in my purse. It’s funny every time I’ve seen them I’m showing them something new, teaching them. 
I thinks that maybe I’ve have an enzyme deficiency for a very long time. Which has gradually gotten worse over the years and maybe the diagnosis of IBS from 2000 was a misdiagnosis. But with my record I could have both. 
May 10th I also visit my Neurologist since her office is in the same hospital, I gave her receptionist photos of my back after the botched Lumbar puncture, and discussed my intolerance to the Diamox.
By the 12th I had a prescription called into the pharmacy for 20 mg Lasix, another type of diuretic not as powerful or clinically useful for PseudoTumor Cerebri but usually more tolerated.
I had been on Lasix for few weeks last year and don’t recall having any notable side effects so after a week on it this time I was concerned and confused that it was making me a ill. Nowhere near as bad as the Diamox but still. So I read up on it and found out that Aspirin can interact, sometimes fatally!! So I stopped taking my daily Aspirin which I know will make my hematologist, Dr. Winegarden upset because he prescribed me to take it for his fear I might stroke or something. On 16th He told me he was sending me to another Hematologist at U of M to further to get a 2nd opinion on my Antiphospholid Antibody Syndrome (APS).But even after quitting the Aspirin I was still having side effects so I quit the Lasix for couple days and then I thought maybe a its interaction with my other prescriptions. So I began taking Lasix again but trying to take it with food and few hours after my five (5) other morning prescription. That did seem to work some. The pain, blurred vision and leg weakness got better but still gives me headaches and it’s causing me to have worse diarrhea and sexual side effects. Win some, lose some I guess. 
On the 17th I saw my Rheumatologist, Dr. Dowd as usual it seem just a waste of time and money.
Same ole stuff -keep taking supplements, go on a diet using HIS food plan, come back in 6 months.
Ok so that’s the medical updates.
Posted on Friday, May 18, 2007 at 12:53 AM in
I skipped out on working for Joan on Tuesday because I was at Rob’s he had kept me up until 4-5 am that day, then was power outage or something cuz when I woke up the clock was blinking and when I checked time on a watch it was already after 11am. There is no long distance service on Rob’s home phone and he had only few minutes left on his cell, I could not remember Joan’s phone so I called Home asked Dad to contact her for me apologize for not being able to make it. I wanted to leave ASAP and try get there put few hours in but Rob convinced me to stay. At 2:00 I tried again to leave but Rob begged and whined for me to stay until 3:30 when he left for work.
On the way home I got stuck in bad storm it was raining so hard I could barely see car in front of me, everybody was going slow and just following the tail lights in front of them. When I got near home the storm let up to humid sunny sky but I hit horrible construction traffic and was stuck in a sweltering car for an hour crawling along in traffic. I had to put sun block on, because I was starting to get a burn. I have very fair skin plus one of the meds I’m on Lasix causes increased sun sensitivity. It took me nearly 3 hours to get home when my normal drive is an hour. I was sore, exhausted and quite freckled by the time I got home.
Wednesday May 16th my brother Aral’s birthday. He’s still in Cali right now but I mailed him a card with lil money and a gag gift, an “Ask Jesus” statue, in the bottom it has the blue fluid with multi-angle cubes that give answers to questions, like a Magic 8 ball.
Wed morning I saw my hematologist, Dr. Winegarden at SJM woodland Hospital. Last time I saw him was 6 months ago so there was a lot to go over with him from all the other doctors tests and such. Dr. Winegarden is concerned about me having AntiPhospholipid Antibody syndrome (APS), he wants to put me on coumadin as stronger preventive for strokes and clots than just aspirin therapy. But I am a weird case so he’s not sure what to do and is having me referred to specialist at U of M hospital. I don’t think I need coumadin, between daily aspirin and high doses of Omega 3 oils my blood should be thinned enough to prevent any problems.
On the way out I stopped by Clark eye center signed a medical release so Dr.Nemeth & I could get copies of all previous files/tests.
Thursday may 17th I saw my Rheumetologist, Dr. Dowd. This also was a 6 months check up and a lot to review. He prescribed an increase in my Omega 3 supplements from 3000 to 5000mg a day. He tired before to give me a prescription for a concentrated high dose but my insurance refused. He warned me that the over the counter fish oil I have been taking has vitamin A and impurities, which is OK for a person taking one a day but the high doses I have been prescribed/need could be causing me to get too much Vit A. So he told me to either buy the ones they offer in his office or buy a high grade Omega 3 supplement with the highest concentration of docosahexaenoic acid (DHA) and eicosapentaenoic acid (EPA) I can find.
Explanation of the different grades of Fish oil supplements:
Cod Liver Oil -This is the lowest quality fish oil since it has a low concentration of long-chain omega-3 fatty acids and contains the highest levels of contaminants (organic mercury, PCB’s, and DDT). In addition, high-dose usage of cod liver oil is not recommended due to the high levels of Vitamin A found in this form of fish oil. This is the most inexpensive form of fish oil, and often cause “fish burps”.
Health Food-grade Fish Oils- The levels of contaminants in fish oils is often determined by the size of the fish and their relative rank in the food chain. Small fish (such as sardines and anchovies) are short-lived and therefore are less prone to accumulate environmental pollutants. On the other hand, larger fish such as salmon and mackerel are predatory species that are long-lived and therefore contain higher levels of pollutants. A typical one-gram capsule of health-food grade fish oil contains approximately 300 mg. of long-chain omega-3 fatty acids. Another type of higher-grade health-food fish oil is known as “fish oil concentrate”. This type of fish oil consists of ethyl esters of the fish oil that has been subjected to fractional cooling. A one-gram capsule of this thermally fractionated health-food grade fish oil will contain up to 500 mg. of long-chain omega-3 fatty acids. Health-food grade fish oils are acceptable in small amounts (no more than 3-4 capsules per day) without inducing significant gastric problems.
Ultra Refined Fish Oil -Ultra refined fish oil starts with thermally fractionated health-food fish oil that is then distilled by highly complex refining technology into fractions rich in long-chain omega-3 fatty acids that are exceptionally low in the long-chain monoenes (that cause gastric distress) and pollutants such as PCB’s and oxidized and polymerized lipids. The individual fractions are then combined to provide the most appropriate balance of EPA and DHA for the finished oil. The typical one-gram capsule of pharmaceutical-grade fish oil will have at least 600 mg. of long-chain omega-3 fatty acids. The increase in the purity of the oil is why it costs nearly twice as much. This purity is also reflected in a dramatically improved taste profile. Only ultra refined fish oils enable you to consume the required daily intake of long-chain omega-3 fatty acids without gastric distress or fear of accumulation of environmental pollutants.
(ref. http://www.healthtransformations.net/products.html)
Omega 3 health benefits:
Improve Cardiac Health
The American Heart Association has recently recognized the importance of the Omega-3 essential nutrients EPA and DHA in promoting cardiac health, lowering blood triglycerides and C-reactive protein, and protecting against cardiovascular disease.
Benefits Joints and more.
A 2007 meta-analysis of the analgesic effects of Omega-3 fatty acid supplementation for inflammatory joint pain show Omega-3s are useful in easing pain and promoting joint comfort. In another study involving rheumatoid arthritis patients, patients ingesting higher amounts of EPA and DHA saw a reduction in their arthritis symptoms in a period of time. Omega-3 fatty acids have also been shown to benefit cognitive, vision, and hormonal functions, and assist in the maintenance of a healthy weight.
Promotes Positive Mood
Research has revealed that the omega-3 component EPA has a powerful mood-elevating and mood-stabilizing quality Leading physicians have shown in clinical trials confirming the positive effects of EPA on mood
Web sites studies/reserach on depression, bipolar disorder & omega 3:
http://www.pendulum.org/bpnews/archive/001874.html
http://www.bastyrcenter.org/content/view/1060/
http://www.mcmanweb.com/article-15.htm
Posted on Friday, May 4, 2007 at 10:18 AM in
Last weekend (April 27th-29th) I started my half doses of DIAMOX (500mg Capsules) in the morning for just 2 days and did not tolerate it well. Intense back pain, muscle weakness, sluggish, achy all over, Pins and needles tingling in my feet hands, blurred vision, vertigo and Bad mouth/breath taste.
I think all except the back pain are listed on the pharmacy warning sheet. The pain may be associated with low potassium. (scroll down to -Potassium in nutrition and medicine) I looked up Diamox online and saw that it is known to pull potassium out of the body and one of the many functions of potassium is pain regulation. When I took a couple potassium supplements the back pain decreased. But I quit the pill and called my Neurologist office.
By Wednesday the results of Diamox had worn off and I finally got a reply from my Neurologist office. They had called in a 1/4 dose prescription of 250mg Tablets of Diamox to the pharmacy and wanted me to try again at the lower dose to see if I could build a tolerance since this drug my Neurologist knows is most effective for treating Psuedotumor cerebri.
Thursday I went to See Dr. Nemeth my primary doctor. I wanted her to do Kidney and Liver function blood tests on me just to make sure Diamox wasn’t hurting me. We discussed my problem with chronic diarrhea for 3-4 months now? She was irritated that the gastro docs (Walsh & Yazdani) didn’t test me for parasites or do a stool composition testing. That Dr. Walsh just told me to take Imodium, because they couldn’t see a reason for diarrhea on the digestive endoscopy exams and assumes it was just all caused by medicine. And that he, like my other specialist are pushing me to get a gastric procedure.
Dr. Nemeth said until we can figure out and control my diarrhea that a gastric procedure is not viable because it will just make me have more digestive problems.
So she is trying to figure out what is causing it, by trial and error basically. She prescribed me low dose pancreatic enzymes to take with my meals; if I see an improvement in my bowel function then we have found the problem. If not…try something else.
Also she agreed to set up an endocrine appointment for me have all that check out, and also she is seeing if I can get Lymphadema therapy again because I’ve continued to have problems with swelling which was aggravated by my fall on the stairs. She also prescribe Compression stocking but it will be few days before I know if insurance will cover it, they are expensive $60-$150 a pair and your supposed to have 2 pairs.
Today is Friday May 4th and I was supposed to go help Joan with her house work, but I started the lower dose of Diamox yesterday and already I feel like living dead. I’m Peeing every few hrs even when I’m not drinking anything(or trying to sleep), which could lead to dehydration so I have to make myself drink. I’m spending way too much of my life on a toilet. So I feel physically and emotionally shitty because I haven’t been able to help Joan at all this week and this medicine is Kicking my @$$!!
But I’ll give the Diamox a couple more days see if I actually do build a tolerance. Hopefully adding 99mg Potassium supplements twice a day to my already extensive list of supplements and medications, plus eating more potassium foods will help the with weakness and pain.
Posted on Thursday, April 26, 2007 at 04:02 PM in
Saw Dr. Begum my neurologist yesterday, Wednesday we talked about Dr. Tocco-Bradley’s butcher job of my lumbar puncture procedure but readings definitely show I have excessive intercranial pressure. SO Begum prescribed a medication, DIAMOX that May relive this condition, But because this is not common pill my pharmacy does not have it in stock and has to order it and Michael the pharmacist is unsure if insurance will even cover it.
Thursday
Just feeling soooo overwhelmed today. The lumbar puncture finally gave “official” confirmation of excess intracranial pressure that my Neuro has had diagnosed since June 2006 but only now will the insurance allow me treatment. I have to go pick up my DIAMOX, the Pharmacy had it express shipped and just called me this afternoon to tell me it was in.
After approximately a month on this new med I have to get another lumbar puncture to see if it’s even working. Both my Neuro and I agree I need to find a new facility/doctor to perform the 2nd procedure cuz the last doc was a major $@#& up, But finding one to take my insurance is @#%$#$ pain. Then getting the referral paper work from my primary doctor and setting it all up. OUI!
I’ve been trying to organize my med files, I mostly just have tests results but I’m finding out I should have been getting dictations from doc appointments too, especially after every major test/event, because doctor’s evaluation of procedures/tests can be very important to my case. Soooo I’m trying to remember and enforce my doctors sending me all files and dictation. Plus catch up with a few doc’s who didn’t honor my request/demand to send me copies like my eye doctor. They didn’t even send a report to my primary doctor, that’s just professional courtesy. Anyway I NEED to do this and make an organized outline so I can send copies to my attorney and to S.S office because I am appealing my denial for disability assistance.
I still need to find an Endocrinologist. Dr. Nemeth asked me to see one many months ago but other medical mysteries /problems kept arising. If and when I do see an Endo I get to look forward to a barrage of hormonal and possible chromosomal blood tests and hopefully nothing else.
Also I have to make an appointment with a gastric surgeon, likey have to pay for the consult my self and then if the insurance covers it I’ll probably be having surgery later this year. Because I have a small hiatus hernia that needs repair and most my Doctors are strongly recommending and urging me to have some digestive rerouting done.
My brother in law jokes I have so many medical anomolies and disorders that I should be on the TV show HOUSE or that I should be eligble for EXTREME MAKEOVER: HOME EDITION to come redo my parents house. I’d love to have them tear down this decaying heap and build our family a new handicap accessible, allergen resistant, Hepa air filtered home. But if you watch the show they always go for famlies with younger kids, I’ve never seen them do a rebuild for a multifamily household of adults(my neice is the only minor), specailly a bunch of overweight not so gorgeous ones like us. Though I could be pretty damn sexy if i wasn’t so sick and fat, LOL.
Posted on Sunday, April 22, 2007 at 12:59 AM in
Yeh, been slow on blogging again, Just not felt like blogging, like what’s the point. Does anybody out there really cares that I’m doing this. Maybe 1-2 member of my family are semi-regular readers, that’s also why gotta keep it PG-13, prob have more reader if wrote steamy sex stuff LOL. But I guess This blog is more just for me to keep my head straight. Anyway…..
Of the many, many, many tests, scans, procedure I’ve had over the last year like 90% have uncovered new disorders, illness, syndrome or whatever. This makes me feel worse because seems so many of my body systems are dysfunctional or damaged and that it seems hopeless to keep struggling.
But I guess it good to know what all the dysfunctions are because then all my Physicians and I can try to repair and heal my body, even if they have yet to discover the root cause.
I’ve been trying to lose weight I’ve been not so fabulous on watching calories but have cut back and become more active and for like almost 3 months my Metformin which I have to take with brunch and dinner has been giving me diarrhea. So most my food lwas leaving me within 30-45 minutes of eating, which is totally unpleasant and means for meals I have to plan to be near a bathroom. diarrhea is not undercontrol by taking a couple special tri-fiber pills every time I take the Metformin.
But I’ve been trying to lose weight and I have done it before I thought with my increase exercise, reduce food intake and partial absorption of thus food would create weight loss but I haven’t lost one single pound, So I’m like WHY ^$&*%^ am I not losing ANY weight.
Well my Gastroenterologist, Dr. Walsh explained it to me at my last visit:
Blood tests I’ve had thru out the last 12 months show I have not been absorbing nutrition very well. That I was/am actually malnourished - even though I am OBESE and on doctor prescribed/recommended Mega High does vitamins and supplements, Amounts that could possibly be overdosing to a normal person.
Because I have this absorption problem when I go on a diet my body triggers a response believing I am starving and holds on to every new calorie absorbed and locks in my massive stores of fat believing my life depends on it, when in fact its slowly killing me.
Dr. Walsh said between this digestive problem and my insulin resistance I WILL NOT LOSE WEIGHT DIETING!!! He said only way I can lose weight is if I get Bariatric surgery. Surgery scares me, I don’t have a good track record with surgery, 3 out 4 times I’ve developed complications. Also I don’t know if my insurance will even cover it, but Dr.Walsh said I’ll keep getting worse. SOooo I guess will see if I can even talk to Bariatric Surgeon to weigh my choices, no pun intended. Dr. Walsh said he’d back me; My Pulmonologist & Neurologist also recommended the surgery and said they would back it too. Maybe that will help with approval?
Also learned from the EGD results that I have a small Hiatus Hernia and that is the reason I developed chronic GERD, which has also been made worse by medications. If I get a Bariatric surgery then will likely also correct the hernia at that time too.
Posted on Wednesday, April 11, 2007 at 10:27 PM in
April 1st, April Fools Day was my parents 40th Anniversary. My father shocked and surprised my mother with a gorgeous new ring set which included a bigger diamond engagement ring and matching diamond studded wedding band.
These 1st 2 weeks of April I’ve been taking it pretty easy recovering from my Lumbar puncture. When Monday I received a copy of my medical report and was quite annoyed and upset to read that the hour of repeated spinal punctures were because of the doctor’s blatant stupidity. They had been using the 5 inch needle for approximately the 1st hour then when she switched to the 7 inch they performed a successful insertion into my spinal canal.
At my initial consultation I had boldly stated and repeated to the doc, she MUST use a 7 inch needle that my neurologist insisted on it! I know my Neurologist’s orders said use a 7 inch needle too because I have a copy of that form. What a Fucked up person to ignore me and my Neurologist and go an HOUR torturing me to try proving they were right and yet miserably fail.
I’ve been busy this week actually “working”. Joan and Frank are elderly friends of the family I’ve known since I was a girl. Frank is in late stage Parkinson’s and had been having more problems lately so Joan spends most of her time looking after him. She needed some help so last week she asked me to come in twice a week for a few hours to take care of her dog, Twinkles and do some no/low impact tasks.
This week Frank had a complication with his medication and was hospitalized half the week, so I was stopping in everyday to feed and care for Twinkles. It’s feels nice to be useful and get out of the house.
I also spent few hours this week sorting my jewelry, knitting and craft supplies into the shelved storage units Rob bought me last week. Now it is a lot easier to find items so optimistically I can begin crafting again.
I’ve been having a lot of “digestive distress” for almost 2 months because I ran out of my special Tri-fiber pills which I can only get through the mail and I have not had the money to re-order them. These supplements are only thing I have found that counter the nasty effects of my Metformin medication and are inexpensive.
But Mom and I made an order of all our supplements from Swanson Vitamins a little over a week ago and we received it today, so my digestive system should hopefully stabilize in a few days.
Posted on Saturday, March 31, 2007 at 08:56 PM in
Thursday Morning I checked into Woodland Hospital as 8:15 am, a nurse handed my Dad a pager and took me back to be prepped for my lumbar puncture, cerebral-spinal fluid pressure check and drainage of the fluid to relieve pressure.
By 8:30am I was laid out on a gurney with an IV in my left wrist, auto blood pressure cuff on my right arm and pulse rate monitor on my left finger. They paged Dad and allowed him to sit with me until 9 ish when they rolled me into the procedure room.
Here I was laid on my left side and contorted into an unusual position, made to hold very still, with no pain meds and fully awake, as they repeated jabbed a needle into my back and tried to get it thru into the spinal canal. Each time I’d yell Ouch or some exclamation of pain and the doctor(s) would ask me “LEFT or RIGHT?” to figure out what part of the vertebra bone or spinal nerve they have just jabbed. My legs began to cramp and quiver so I asked a nurse to hold them so I would not move. Finally After 10-15 excruciatingly painful needle jabs they finally got it in.
The Doctor attached the manometer (fluid pressure gauge) confirmed the pressure was too high, 270 proceeded to drip drain 4 tubes of fluid, that were promptly sent off the lab. Checked my pressure again, it was still higher than normal. She proceeded to drain a little more, checked it again it was still high, 260. My neurologist wanted it down to 200 but at this time the operating physician felt they needed to stop because I had been on the table for about 2 hours. So the 7 inch needle was withdrawn from my spinal canal, I was rolled back onto the gurney and sent to the recovery room to rest for an hour to allow the hole(s) in my spine to seal.
In recovery a pair of Nurses proceeded to take a blood sample from me and only got 1/3 of a tube after 2 tries and the veins collapsing both time but they sent it off to the lab anyway. Then they paged my father to come sit with me the remaining 30 minutes before my release. When he came in his face was rather pale and he looked shook up. That’s when he proceeded to tell me he had been freaking out because they told him my procedure would be 20 min to an hour, he had been waiting 2 and half hours, and thought something major had gone wrong, like they had severed my spinal cord or nerves or ruptured something. SO he was very glad I was fine even though I had to go thru such painful ordeal.
While waiting in recovery we noticed an interesting thing; my blood pressure went from like 146/101 to 121/67. I guess draining some of that cerebral-spinal fluid out was helping my high blood pressure too?
After my hour in recovery was up a nurse took out my IV, removed the BP cuff and the pulse monitor. They sent my dad for my car, had me sign another release form so I could receive copies of MY OWN medical records. The wheeled me to the elevator and down to 1st floor and outside to Dad and my car.
I was there from 8:15am till 12:00pm. I was supposed to be out by 10 am. Nothing is ever easy with me.
I’ve spent most of the weekend resting, laying down or reclining. Rob spent Thursday night and Friday with me to keep me company. He enjoyed keeping me in bed, having lots of snuggle time. My back is still very sore, the spinal nerves they “nicked” are causing spasms of pain and periodic numbness down my legs and butt and I have been getting nasty “low pressure” headache when I am up very long. So I’m trying to take it easy, spend more time layign down than up and not pick up anything even slightly heavy. The doctor warned that could reopen the hole and leak more fluid, very very bad to do.
