June & July Updates
Well it’s been almost 2 weeks since I have posted what’s gone on?
June 24th was my MRI & MRA normally a 45 minute drive turned into a 2 hour drive of HELL. My parents wanted to go with me and a friend who has had few MRI advised that she always needs someone to drive her home afterward because it makes her so dizzy. My appointment was at 5pm, but I was told to come a b it early to fill out forms. We left at 3:30 thinking we’d get there at 4:30 with time to fill out the paperwork. It was lovely of the receptionist to not inform me when she confirmed my appointment that there was MASSIVE construction, the exits around them were closed and the direction on there website were totally useless. So we had to take back roads got a bit lost and were half an hour late thought we did have a cell phone and I kept calling to let them know we were on out way. I got there lil before 5:30 and was told I had 4 minutes to get on the table or I’d have to reschedule and pay cancel appointment fee. So the receptionist quickly had me sign forms while the tech raced me into the MRI room, telling me the procedure on the way, took my glasses, shoved me into the machine and told me I hope I have time to finish your scans before next appointment arrives. I’m not normally a claustrophobic person so I thought oh I’ll be fine…Nope once I was closed in I started to hyperventilate & have a panic attack, but I knew if I stopped the scan I’d have to come back so I just tried chanting a mantra in my head to calm myself. When I was done and table withdrawn from the machine some women appeared, not sure if she was nurse or what but she said you’re done, go. She didn’t hand me my glasses or offer me a hand off the table. He I was blind and very dizzy she practically pushed me of the table and out the room. On my way out I had to fill out more paper work and then the receptionist handed me films of my scan. The look like x-ray films, but are off my brain and cerebral vessels. She said these were my copies and to not let any doctor keep them because I’d have to pay a lot to get new copies. Pretty cool to have scans of my brain. I looked them over but have no clue if there is anything abnormal about them.
The morning of Monday 26th had my routine Complete blood count with Differential blood draw. (CBC w/diff) Then I went down to visit Rob spend most the week with him.
Tuesday was his 2nd nieces 13th birthday, we were driving round trying to decide where to go shopping to get her a gift (since Rob always waits to last minute) and we saw a jewelry store that was closing. We got her some sterling silver jewelry; a guardian angel necklace and a necklace & earring set that looks like a stylized sun with blue/green color shift stone in the center. Only cost $25 the original cost was around $120. His niece was very pleased with her presents so Rob was happy.
Tuesday was also the day I started my period which for some reason was extremely painful and exceedingly heavy flow. My periods have never been “easy” but I’ve never need to take pain pills as much as I did this past week and I went thru a whole pack of pads on Thursday I had to go buy another pack, ruined 3 pair of undies and even left my mark on Rob’s sheet & mattress.
Thursday Rob had to work so I spent park of the day with his Mom, then I went out to the store, drove around visited a friend. The walking really tires me out and makes me sore but it helps the swelling in my feet go down. My feet are swelling every day now, its very unpleasant and dammit I can’t wear any of my nice shoes LOL.
Thursday eve was also kind of the 1st major tiff I’ve had with Rob. He left me in the living room, trapped in conversation with his mother, while he went to go play on his computer. I enjoy conversations wit his mother but after 2 hours of trying to excuse myself he is supposed to come get me. So finally I excuse myself to the bathroom and go check what is keeping Rob so occupied. I walk in and see he is talking to someone on yahoo, which I have no problem with I talk to people all the time but he tries to hide it. He clicked off yahoo and then when I asked why he 1st lied saying he wasn’t talking to anyone, but then when I told him I know you lying to me, he fessed up said it was one of his ex-girlfriends from some years ago and tried to hide it from me because he didn’t want me getting upset that he was talking to her. I said I’m not upset you were talking to her I’m pissed you lied to me. I said you can talk to a woman while she is on cam doing obscene things and I’ll be fine but lying to me implies guilt and you were doing something I should be suspicious of. He has apologized profusely and admits he was just being stupid.
Friday I took his 14 yr old niece to the Movies she wanted to see “The Devils Wears Prada” It was a pretty good movie. Afterwards we had an hour or so before we had to get back she said she wanted to go to a coffee shop. So we went to Panera, a coffee house, bakery, deli place. I ordered a Mediterranean veggie sandwich and got us both coffees. It was after I ordered the coffee that she told me her parents don’t let her have it. I asked why because she drips caffeinated pop like crazy and I’ve seen them buy her high sugar ice coffee drinks. I only at half my sandwich and took rest with me. When we got to Rob’s home his parents, sis, bro in law and 2 nieces there, they were serving hamburgers, Mac n cheese and melon for dinner. So I had some melon and other half of my sandwich, because I knew later that evening I’m probably not be eating so healthy.
That evening Rob and I hung out with Melissa, we had pizza and slurpees, though mine was diet one. We had a good time talking, watching a movie, relaxing, though I might have got food poisoning or something. At 1st I thought it was just an IBS attack but I wasn’t having the spastic cramps just nausea and lots of diarrhea. Its still going today but now I have a fever, nausea is worse and I’m having cold sweat, pain in abdomen and back. I was probably the only one affected because I am coming off the prednisone and my immune system is still suppressed which makes me much more susceptible to all infections.
Saturday I spent with Melissa she had day off but Rob had to work, we went shopping. She is throwing a 60th birthday party for her Mom and was checking out costs of decorations, favors, etc. We also checked out few stores in the mall, Bath & body works was having a big sale so she picked up some lotions and stuff and surprised me buy buying me some too. That evening we were supposed to go pick up Rob at his house once he got home from work. When we got there creepy psycho Jon was there, he invited himself to dinner with us. At dinner he kept going back and forth from insulting Melissa to hitting on her in his weird offensive way. He’s always rude and insulting Rob and he pretty much left me alone or I was just ignoring him so well I didn’t hear it. I think he has been little more respectful of me lately because I am so ill. After dinner we finally got Jon to leave, 3 of us (Melissa, Rob & I) went to Priscilla’s then stopped by Kinko’s Rob used to work at, Melissa still works for, because Bryce a co-worker/ friend was working and Rob needed to pick up some disk from him. While we were there socializing. Rob was asked to help fix a comp problems and Melissa was using one of computers to check her mail. Guess who walks in? Jon, he just happened to be going to the mall and saw a car that he recognized as Rob’s, so he decided to come stalk us. Rob had only had that car for 3 days; Jon had only seen it for 1st time that day? He already had memorized what it looked like and probably the plates, Psycho. He wouldn’t leave, was annoying hell out of all of us, and making Melissa feel very uncomfortable. Finally Rob finished up what he was doing and we went to Culver, Rob & Melissa had frozen custard, I had an italian ice like drink. Lucky for us Jon wasn’t hungry and doesn’t like ice cream so he finally went home.
Sunday morning I drove home after unpacking my car and taking some pills I crashed and slept most the day away. This was when nausea got bad, cold sweats, abdomen & back pain started up.
Monday I had my blood drawn, CBC w/ Diff, complete metabolic panel and maybe something else? For a couple hours in the early evening I was alone, my niece is gone for a week at her aunts, my sister and bro in law went out to friends, my parents went to the movies. I spent most that time crying. Not sure if just stress and extra added infection took me over the top or just that I was alone so wasn’t afraid to let it all out. I’ve been feeling very depressed and lot of SI thoughts for last couple weeks; they seem to be getting worse. I’m always more emotional during my periods but my period is over and I still don’t feel any emotional improvement.
Tuesday 4th of July I spent most the day sleeping because I felt so ill, The family had a BBQ and Dad left off a few fireworks but was relatively a boring Independence day.
Wednesday morning I saw my primary care Physician, Dr. Nemeth. She thinks I have a urinary tract infection and am lactose intolerant. She says my symptoms came on to quick to be food poisoning and lasting too long to be stomach flu. That a combination of my IBS and lactose intolerance has set off a revolt in my digestive system so I am to be on a bland diet for a few days to try and calm it down, and put me on antibiotics for the infection.
After my appointment Mom and I went to visit Aral for a few minutes and drop off his mail. Then we went to my hematology appointment with Dr.Winegarden. I was shocked and very upset when I got weighed because I have gained more weight since my visit last month. I was sure I had lost weight because I’ve been eating healthier, walking more, walked every day this past week and had diarrhea for 5 days. What the Hell is going on with my body?! Also my platelets are dropping they went down about 30,000 uL to 136,000 uL (136 x10^3/ uL) since last week thats 4000 uL below normal but still in the “safe” range. If they get below 50,000 uL and I don’t have better insurance they will likely but me back on the nasty harmful Prednisone (corticosteroids pills), but if I get Medicaid I believe that will cover the Rituxan IV transfusions. Oh and I talked Dr.Winegarden into testing me for Lyme antibodies.. He added it to my next blood draw, even though I told him I was prescribed antibiotics today. I just looked it up and confirmed my concern that antibiotics could affect the test. A “False negative” can results if the Lyme antibody titer test is taken after a course of antibiotics because there may be a decrease in the level of antibodies present. So either he wasn’t thinking or just humoring me and not caring what the results were because it’s not his “area” of expertise or treatment. I should have gone with my gut and made him write the order up for today but now I have started the antibiotics.
Getting my antibiotics today was not easy. When I went to pick them up the pharmacist said the computer system told him my policy had been cancelled. I didn’t have enough money to pay full price for the medicines so he gave me 2 days worth and said to call my insurance to straighten it out. That’s the nice thing about using a small town pharmacy.
I went home and called the pharmaceutical provider they told me I had been “updated” but my policy was still active. They gave me some instructions on how the pharmacist should input my info into the system and if he still had problems he should call them directly. So tomorrow I’ll go and try to pick up the rest of my pills.
Also tomorrow I need to work on sewing my dress (es). I am going to Toronto with Rob. To a RUSH conference, if you don’t know what RUSH is, it’s a Rock Music group. I’m not a big RUSH fan but Rob begged me to go and a trip to Toronto should be fun. One of the dresses I am sewing is a Chinese style dress because Saturday event is themed. I could not find a kimono or Chinese dress that fit me AND I could afford. I’d have to pay over $100. So I found a nice satiny Asian print fabric and pattern for $30. I also picked up a summer dress pattern, so if I have time I will make a 2nd casual dress.
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