Posted on Tuesday, May 20, 2008 at 07:11 PM in
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.
Posted on Tuesday, April 1, 2008 at 02:14 PM in
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. 
Posted on Sunday, February 17, 2008 at 01:58 PM in
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. 
Posted on Monday, February 11, 2008 at 07:14 PM in
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.
Posted on Monday, February 11, 2008 at 07:13 PM in
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.
Posted on Monday, February 11, 2008 at 07:12 PM in
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.
Posted on Monday, February 11, 2008 at 07:11 PM in
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.
Posted on Tuesday, January 8, 2008 at 06:09 PM in
Not having my own computer makes it more difficult to keep up with this blogging journal. But he’s an overview of what’s been happening since my last entry.
December 13th I had a return visit to Dr.Nemeth. She prescribed Zithromax but my insurance refused to pay for it so I had to wait few days for my doctor to find one a stronger antibiotic they would pay for. I believe it was a generic form of Erythromycin. Which was kind of a pain since Zithro is a one a day pill and Ethythro is 3 a day but I took all my meds like good girl and finally got rid of the infection.
On the 16th we had a big winter storm snow and ice very nasty. My Dad tried to go out and walk down the hill he didn’t get more than few yards before he slipped on ice and ended up seriously injuring his right foot. He tried to play tough guy and not go to the hospital but few days later when pain still quite bad Mom talked him into seeing the doctor and getting x-rays. He tore up some tendons and ligaments. He was on bed rest for 10 days then on crutches with limited activity. Though he has not completely obeyed and he’s older so it’s not healing very quickly.
On 22nd most of our family in Michigan went to see my brother perform “Every Christmas Story Ever Told”. The show had been running at the Meadow Brooke Theatre through November and 1st of December and ended its run at The Williamston Theatre.
We all convened on this day to see his performance along with some of his girlfriend’s family from Ohio because he had invited us to see a special end to this show. He proposed to his girlfriend, AWWWWWWWW. It was sweet. She did notice all the family there so she knew something was up but was still surprised. They are planning for a 2009 Wedding. I still am wondering how my Wedding this coming October is going to turn out. Rob is a PAIN he wants to be involved in all aspects but won’t settle on a decision or has ideals that don’t translate well into our budget and resources.
I know my wedding it’s not going to be a grand fairy tale wedding but I hope it comes out really nice.
Christmas eve we spent with Rob’s paternal family (Rob’s fathers’ mom, sisters, brothers etc.) it was quite… interesting lot of big drinkers in his family.
Christmas day we spent with my family, lots of food, presents, noise and cheerful chaos.
I always enjoy watching people open the gifts I gave them and I received lot of nice gifts too. Even the Kitty’s all got presents.
New Year’s Eve I was annoyed. A girlfriend had agreed 2 weeks in advance to come out to my place & drag Rob along. So we all could have a safe New Years Eve. I had enough beds/couches at my place for guests to crash so no one would be driving.
The Night of Dec 30th she cancels but doesn’t even perform the courtesy of calling me. She just tells Rob, so Rob calls and begs me to come down, which I did. I wanted to spend New Years with my fiancé but he will tell yah I was fuming. I ended up having pretty decent time anyway.
We had another big snow storm beginning of 2008 so I came home to about 2 feet of snow filling my drive way. I had to park in the road. The next morning of Jan 4th Mom was shoveling a path for me and trying to at least clear the end of the drive to park my car in. I was of little help I tried to shovel but my illness makes me weak and useless. What was ironically funny was at that moment I was wishing I had a show plow, a few minutes later a neighbor stops and tells us he’s got a plow; he’d come back and clear my drive. Leo owns a sprinkler/ lawn service and snow plow business and he lives just down are road. When he came back with the plow truck we sent mom inside to get warm. I helped him cut branches off trees lining the drive so his BIG truck would not get scratched up as he cleared my drive. THANK YOU kind neighbor Leo.
Jan 7th I walked Joan’s dog yesterday I felt I needed the exercise haven’t been walking much with all the bad weather. That pain in my right foot up my leg is back. It would probably help if I had better walking shoes and some supportive insoles. My sneakers are pretty worn out. I need to get some winter hiking shoes/boots but I won’t have money for that until next month too many bills to pay.
Today is January 8th I had an 8:00am appointment to meet the doctor who was to perform my 2nd lumbar puncture and drainage because of the PseudoTumor Cerebri.
I arrived at the main hospital and was told they didn’t have me on the schedule. The receptionist asked if I was scheduled at the other building. Neither my doctors nor the receptionist who made my appointment thought to mention that there are 2 building both housing different sets of doctors working for the same division. Today’s appointment was in the newer building around the block.
My doctor Brandon Gaetino and his staff were excellent. Kind, compassionate, skilled, 300% better than my last lumbar puncture and he was cute.They made me feel comfortable, at ease and got the needle in on the 1st try, unlike 20 + impaling stabs from the previous clinic. I did have high intracranial pressure again, NO DUH. My opening pressure was 27.2 mmHg they drained 15ml with a closing pressure of 19.7 mmHg. A pressure of 25 mmHg or greater is indicative of intracranial hypertension.
Poor mom was freaking in the waiting room because she was worried it be another nightmare procedure but a nurse went out every few minutes to give her updates
My back is sore and I was little dizzy all day but I’m doing fine.
Posted on Tuesday, December 11, 2007 at 11:26 PM in
I’ve had a pretty wicked sinus infection for about 3 weeks now. Last Tuesday Dec 4th I went to my primary doctor and she gave me some antibiotics and a nasal spray, but my antibiotics are almost gone. My sinuses feel lot better but there is still some drainage and for the last few days my right inner ear and throat has been hurting, which is probably an inflamed eustachian tube. So I’m going to need to go back to the doctor and get more antibiotics or maybe something stronger kinda scary to think I’ve got some ‘bug” that is antibiotic resistant. Oh and I just received a letter from My primary doctors office saying my insurance didn’t cover cost of my last visit so I gotta find out what’s up with that?
I visited with Rob this weekend helped him do some of his holiday shopping. Getting to and from his home wasn’t much fun because of the nasty winter storms. My poor old car doesn’t like it much either she blew a fuse or has an electrical short. The panel lights, radio/clock lights are out as well as the heat fan not working. Very sucky!
Oh, also week or two ago I got a surprise belated birthday gift ‘Michael Love’ a yahoo/web friend sent me couple books off my amazon wish list. I was totally surprised since I’ve not had a chat with him in a long time. Thanx Mike.
Posted on Thursday, November 29, 2007 at 07:45 PM in
October 28th Mom and I went to a bridal Show at ‘Barn Stormers’ we had a lot. I picked up some discount vouchers for photographers and other services. This facility started out as a bar but has been remolded so much it’s a full service facility with reasonable prices, I was impressed. Mom and I are going to check out few more places before we decide on a reception site. We plan to reserve a place in February; I just hope Oct 25th 2008 is still available.
November 16th was an Endocrinologist check up, Dr.Chun discussed decreasing my spironolactone medicine because it makes me urinate so much, but I’ve had such a positive effect on it we decided to keep it at the current dose (100mg twice a day) for now. He also voiced concern that I lost weight so rapidly since 1st visit in July. I told him not to be concerned that I was still eating healthy and most of the weight was just my body getting rid of the lymphedema. Yeah! the pressure off my organs and lungs has made me feel better I can walk upstairs without feeling like my lungs are being crushed and I have normal feet again they don’t look like bloated dead toads 
.
22nd was thanksgiving most the tribe who live in Michigan was here. We had huge feast with turkey and a spiral ham, 5 different pies. It was a lot of noise and chaotic fun. Afterwards we split in two groups each watched a different movie, relaxed, enjoyed our satiated bloated bellies.
28th was my birthday. I spent the morning at the Neurologist. I showed doctor Begum the weight chart I have been keeping and how I’ve lost about 45lbs this year but she still nagged me about getting a gastric bypass. She is worried my weight loss is too slow and won’t stay off. Obesity can aggravate any existing medical condition especially the many I have.
I’ve been having migraines more often and more intense in last few months. They are pretty much everyday now, Plus memory, concentration and all other sort of problems. So Dr. Begum wants me to get another Lumbar Puncture. Plus because my Creatine Kinase levels have been continually high she wants me to get a muscle biopsy.
That eve I had ice cream and cake with my parents and 2 of my sibling’s families. My parents got me a winter coat, though we ordered it online so I’m still waiting for it. My youngest sis and her hubby gave me assorted dark chocolates, my eldest sister’s family game me a Dragon Skull necklace and a book, ‘Paint it Black’. My sis in N. Carolina sent me a gift card; I used it to buy Christmas presents. My brother said he would take me out to lunch.
Friday 30th my parents surprised me with a belated birthday gift they took me to a newer Japanese restaurant in the area.The sushi/sashimi platter I had was beautifully arranged and tasted wonderful. Dessert was fabulous too. we shared a “sundae” with a scoop each of red bean, green tea, ginger and vanilla ice cream, garnished with slices of tempura fried banana, chocolate sauce and whip cream.
Posted on Friday, November 2, 2007 at 08:49 PM in
Update on my FIA state assistance:
My doctor office said they had mailed the paper work weeks ago but my FIA social worker said they never received it so I hand delivered another copy. The social worker got an extension or hold so my case wasn’t dropped, it went through review again and I was notified today by postal letter my medicaid coverage was renewed.
I’m still waiting for a court date to appeal my denial on social security disability, which is a federal program. I should touch base with my lawyer, give him updated medical files. I’ve had lot more tests since last saw him and will have echocardiogram of my heart coming monday 11/5/07
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Staying at the river house has been lot more of a hassle then I thought it would be, there is a blockage or something in the plumbing system, leaks and more. I don’t have a fully functional toilet and can’t do laundry, cook, shower, etc… So I just basically sleep at the house and try to keep the cobwebs down. I spend most my day with the family or visiting with Joan, Frank and Twinkles(the dog). I haven’t been able to visit with Rob my fiancé for couple weeks because he’s been working 6-7 days a week. People got fired & transfered so they’re short staffed.
There are so many projects that need to be done on the house and I’ve not been able to even make much of a dent in the list. Its frustrating to not have physical ability nor the money to do repairs, remodel and such. I’m trying not to get overwhelmed even if i can only paint few feet at a time its still progress.
Another project is now on the top of my list. Since I’ve been sleeping there I’ve noticed a very noisy nest of squirrels in the attic. I need some help putting live trap(s) up there. I don’t even know how or where I can access the attic. If I knew it was safe I’d send Keegan(my cat) after them, he’d chased them out quick. But they need to go besides the damage they are causing the wake me up constantly.
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I decorated my porch for and dressed up as a Vampiress on Halloween to the delight of many neighbor kids and moms. Very few neighbors did decorating this year, though a good deal still gave out treats.
My younger sis and niece and I carved and painted pumpkins most of them went on my porch along with window clings, glow in dark creepy crawlers, fake cob webs with lots of plastic spiders hanging down, Jack Skellington sitting in a chair petting a giant fierce looking rat. It was a sight to see.
My younger sister made Jack’s body from an old suit I bought at a re-sale shop and my neice carved his head from a pumpkin. It was alotta fun.
Posted on Tuesday, October 16, 2007 at 10:12 PM in
My last night blogging before I disassemble my computer for the move.
I received another letter from FIA saying my insurance is cancelled as of 23rd of October. It claims I didn’t turn in paperwork. I hand delivered all my paperwork over a month ago but my doctor took too long to fill out her forms and mail them in. So I need to call my FIA case worker and see if I have to reapply completely (which will be a nightmare) or if I can get my current case re-evaluated Now that she has received those questionnaires and forms from my doctor.
I don’t know how I’ll survive if they take my insurance away. I’m on 10 Prescriptions; there is no way I can afford them all. I can afford maybe a few but how do I decide what ones are more important?
I’m scared, I know without the medicines and doctor monitoring my Illness(es) will take over and I’ll will become useless, decaying waste of flesh.
Posted on Sunday, October 14, 2007 at 07:53 PM in
My second CK blood series came back and was positive for skeletal muscle break down. Myopathy, this is just another part of the Autoimmune Storm I’ve been suffering through for the last couple years. The muscle weakness & pain gets worse and better every couple months, though it seems to be escalating each time taking more of a toll on my body. The blood tests finally caught it in the active phase, so I actual have clinical proof of my weakness. So at least I can prove it’s real but still I can’t do much about it and doctors haven’t told me anything. All I know is I have to keep doing my walking and exercise, keep rebuilding tissue so illness doesn’t cause muscle atrophy.
Saw a U of M hematologist, Dr. Blockenstedt on October 8th. My primary hematologist Dr. Winegarden sent me to her because she has more knowledge and experience with APS.
Was really a waste of time, Sit in the lobby, nurse takes me into the hall to have my vitals taken( I lost another 8lbs) then sent me back to the lobby. little later another nurse takes me to an exan room, does a quick medical history then an intern comes in to take a more thorough history, finally 2 hours later I see the doctor who gives me 10 minutes to pretty much tell me everything I already knew. Then Dr. Blockenstedt orders a massive amount of tests and tells me not to come back unless they find something new and unusual. Then off to find the lab, where they take 10 tubes of my blood.
I have been quite depressed over my obesity and how much weight I need to lose NOT wanting to look like a circus tent when I get married next October. I’ve been so focused on the ultimate goal, ALL I need to lose that I didn’t even realize what I’ve accomplished this year so far. The other day I was adding up the weight I have lost (I keep a log) and realized I’ve lost over 30lbs this year! When I have another 100+ to lose that seems insignificant but it’s a move in the right direction and I need to be happy with every little triumph.
The 2nd week of October my sister, her husband who recently returned from Iraq and 3 yr old nephew were in Michigan visiting. It was great to have them here, I miss them all so much. My nephew just brings so much energy and light even though that same energy can drive his mom crazy lol.
I worry about my nephew because he has obvious signs of Aspergers or Autism but the ONLY pediatric physician the military insurance allows my sister to go to refuses to allow my nephew to be tested. Maybe now that her husband is back he can persuade the doctor to do what is necessary. It is vital for an autistic child to begin a learning program at or before 3 yrs of age so they can better cope/adapt to schooling.
I also worry about all the stress this puts on my sister, taking care of 3rd child alone is difficult enough let alone autistic one. She has Diabetis and other health issues.Plus she has had to deal with a lot of unpleasant and nasty people at Fort Bragg. She is glad to be leaving there soon, even though moving to a new base is a lot of hassle.
This week my younger sis and brother in law will be moving in with my parents temporarily because they were chased out of thier previous living situation with his father in law. Which has prompted me to finish moving all my boxes over to the river house garage. “lil” sis and hubby will take my previous living quarters. Why am I going to the river house? because the myopathy is making it impossible for me to climb stairs safely and my parents want someone there to watch over the house but not move a lot in. As I havve mentioned in previous post the house was left to my father by his deceased parents and is in bad repair.
We are not moving much furniture in because the house is actually under construction. Most the flooring has been ripped out, the rest will be gone by end of the year and repainting is begining. Housing market it soo awful in michigan & the house needs so many repairs it won’t sell. The lack of available money from my retired parents and myself means the house is being repaired/upgraded at a snail pace. It makes me feel dejected and guilty because if I was healthy I could do a lot more myself. Anyway I won’t have such easy access to internet for a while so my blogging may lag but not like anyone will really notice.
Posted on Wednesday, September 19, 2007 at 06:42 PM in
I’ve been lax on posting again, I’ve been having down spiral last 2 months had increase in pain, new areas of pain like heal and arch of my feet and intense muscle weakness. Still not feeling much improved but I have lot to record so I better get to it.
At the beginning of this month of September I had a scare when I received a letter from FIA telling me my benefits were going to be cancelled because during my review I did not turn in my forms and paperwork on time. I was quite hysterically upset thinking I no longer had medical coverage and the fact that I had hand delivered my bundle of forms before the due date. So I immediately called my social worker and was about to go on a rant when she informed me the letter had been a mistake. Whooo!
Thursday the 6th I had a check up with my primary physician, Dr. Nemeth we discussed my continued muscle weakness as well as recent pelvic pain, loss of libido and Again discussed the Lap Band. Dr. Nemeth ordered me up some blood tests and also asked that I have a PAP & vaginal ultrasound to check on the health of my Ovaries. Oh joy. 
Planned Parenthood does not have the Ultrasound equipment so I’ll have to find a diff office for that but I prefer to go to PPH for my PAP because the doctor’s assistant I see is very gently and is not demeaning to fat people.
Friday 7th I started having a gallbladder attack again. Fever pain in my right side under my ribs making it hard to breathe cuz each inhale pushes on the pancreases causing shooting pains. Took some aspirin, flushed myself with fluids but still took a week before it stopped hurting.
Thursday 13th Dr. Nemeth office called me and told me I needed to return to the lab for another tests my creatine kinase (CK) total was quite high and so they wanted to do a secondary more specific test.
Clinically, creatine kinase is assayed in blood tests as a marker of myocardial infarction (heart attack), rhabdomyolysis (severe muscle breakdown) and in acute renal failure.
Friday 14th I had a return visit to my endocrinologist, Dr. Chun to go over all the blood and urine labs he had done last month. The good news when they weighed me I’d lost 6lbs. 
Nothing new or surprising I still have all the endocrine abnormalities of someone with Polycystic Ovarian Syndrome. He 1st offered to treat me by putting me on Birth control/hormone replacement. I had to remind him I was a High thrombosis risk and could not use it.After an embarrassed “oh, yeh, sorry, I forgot” he recommended I go on Spironolactone instead. I was not keen on having ANOTHER pill, but this type medicine has the potential to balance my menstrual cycle, get me off Altace, blood pressure medicine, improve my insulin sensitivity, so possible reduction of Metformin and it may reduce my hirsitism.
I think the Spiro is trying to work its making me have the worst PMS like pain EVER, though still no menstruation. Just cravings and BAD cramps in my back, belly, legs…
Monday 17th I had was at the Clark Eye Center I had a peripheral field and general visual eye exams. I have a slight loss of vision which is normal but doc said it was a very small change. So I didn’t even need to bother with buying new glasses. The peripheral exam came back “fine” Dr. Clark said, that’s good, no damage from PseudoTumor Cerebri to my optic nerves.
Rob has Vacation 20th - 27th, hes going to be here most of it. This weekend we are going to the Michigan Renaissance Festival, Moms coming with Rob and I and we will probably bump into on of Rob’s friends Tery and his freinds, and there friends 
... LOL small group from the down river area that all car pooling together.
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.
