Tuesday, February 23, 2010


I wrote my OH&S exam today. It was purely multiple choice and true/false. Ugh..there were so many questions that I thought were "all of the above". I hope I did well...it's only worth 15%, so if I do well, great, but if I didn't...well...there is an assignment that I'm sure I'm going to ace with my partner and is worth 25%. So, there is recourse if I do not do well.

Tomorrow is my appointment with the ENT....

Sunday, February 21, 2010

Still on the Mend

My ears feel different. They seem to be popping a little bit more. I don't know if that's a good thing or a bad thing. I'm gonna guess its a good thing...maybe whatever fluid that was packed in there is getting "less packed"? Bah that probably didn't make any sense. But I wouldn't say it's a better sensation...just different.

When I swallow, I get a horrible feeling of slight pop in my ear. It's difficult to explain. I'm just hoping that the antibiotics are working.

I have two exams this week. Plus a dialysis delivery scheduled for Wednesday.

I trimmed off a lot of my hair today. It was damaged...because I haven't been taking good care of it. I plan to change that.

That is all for now...

Friday, February 19, 2010

Operation- Prednisone Drop

I sit here doing my best to type. My ears are still plugged. My head hurts. My uppers arms/shoulders as well as my thighs/hips hurt.

I went to see my nephrologist on Thursday. My hemoglobin is "holding steady" at 81 (or 8.1). Still quite low, but much better than 50-something.

After much talk, it was decided that I will remain on the antibiotic, but I can begin to drop this 40mg prednisone dose. I am to drop the prednisone by 5 mg daily, and when I get to 10mg, I'm doing to drop my 2mg until I get back to my previous standing dose, which waas 8mg. The main reason for raising the prednisone was the fact that it was uncertain whether or not these manifestations I was experiencing had something to do with Lupus or not. It has been safely determined that it does not have anything to do with Lupus, therefore its ok for me to drop my dose.

In the meantime, I have now finally gotten an appointment to see an ENT. I'll be going next Wednesday. There were some problems getting me an appointment as apparently all (or most) of the ENTs in my hospital all went on some conference and won't be back for a number of weeks?? The first initial solution was for me to go to emergency, ask to see an ENT, and kinda cross my fingers. I don't know about you, but my idea of a good time when your limbs hurt, your head hurts, and you're hard of hearing is NOT spending what would very likely be an ENTIRE day in the emergency department. When I refused that option, my very diligent nurse managed to get me into a clinic appointment run be residents and not by staff. I'm all about residents...but I'd feel better knowing for sure that a staff doctor would be there to make "final comment". Oh well, I guess everyone is a trained professional.

I'm oh so squirmish when it comes to my ear. Did I mention previously that when I was at sick kids hospital, a student doctor was looking in my ears with one of those instruments, and she shoved it in to far and actually cut my ear? I had blood trickling down the side of my cheeck by the time she was done! Since then...not a fan of people getting too rough around my ears.

Well...that's all for now. Will blog later.

Wednesday, February 17, 2010

What did you say?

Being hard of hearing is so very frustrating. I find myself having to look at people's lips in order to help me understand what they are saying. It's getting kind of scary for me. I'm sure people have had ear infections, have been hard of hearing...and it has gone away. But...I'm scared.

I've resumed another round of those antibiotics again. It's quite apparent that this infection or whatever it is is quite stubborn...so I'm going for another 7 days.

Yesterday, I went to see Dr. Brien, my hemotologist. Bless his heart for remembering me from the last time. He remembered the screamfest that occurred when he performed a bone marrow tap on me the last time. This time, he said that he wanted to do some regular blood tests FIRST before subjecting me to another bone marrow tap. He would make some changes to my medications, wait a few weeks, and go from there. I asked him if I did need another bone marrow tap, if I could somehow be sedated. I simply cannot take that kind of pain again. He mentioned that they do sedation at hospitals like sick kids, but not usually in that particular hospital for that reason. He said we would figure something out if and when we cross that bridge.

He examined me and checked my ears. His reaction when he looked in my ears was enough to make me nervous. He was pretty alarmed at what he saw- it was red and probably full of pus. At this point I'm pretty curious at what the inside of my ear looks like, so I asked him if he had some sort of camera that he could use to show me what it looked like. Unfortunately, he did not.

Dr. Brien was concerned enough to want me to be seen by an ENT doctor. If I have to be seen by an ENT, I hope it's Dr. Irish, the ENT who took care of me when I had a mysterious bump/cyst on the inside of my lower lip. He's really nice and he's at the same hospital as Dr. Brien.

My legs and arms hurt. I'm still walking like an old lady and I'm still off balance. What's even better? I have to go to school tomorrow and do a presentation. I have to do it. I can't lose these marks...I've already lost and missed so much. I refuse to let this semester be a bust because of some dumb ass illness. But i'll only go to school for that presentation, then I have to go to the hospital again for another appointment with Dr. Richardson. I need someone to do something with this blasted 40mg daily dose of prednisone. I can't take it anymore. How did I do 60mg 3 times a day when I was in sick kids hospital?

I have 3 tests/midterms to write in the next 7 days. I think I'm going to have to drop my labour relations class. I've simply missed too much and I don't think I'll be successful in the course...and success is absolutely vital.

I will post more updates as they become available. The act of keeping my head upright makes me lightheaded. I want to lie down now.

Sunday, February 14, 2010

When does the "feeling better" part kick in?

To be honest, I still feel pretty crappy. It seems like all of these remedies being implemented in order to make one thing better makes something else worse.

When this whole thing started, my prednisone was bumped up to 40mg a day from 8mg. I look in the mirror and I see the "moon face" kicking in. Not a fan of that.

I just took the last of my 7 day run of oral antibiotic Levofloxacin. It is a 500mg pill. I don't know what it is, exactly-whether its the prednisone or the antibiotic. but my whole body is just off. My upper arms/shoulder area both hurt a lot. This morning it took me about 30 minutes longer to disconnect myself from my dialysis machine because the act of lifting my arms up to reach for a clamp or a tube was painful. I feel the same pain in my upper legs/hips. My hearing is still altered by this ear infection. If I swallow, I can hear clearly for about 5 seconds before it seems to dim down again. Food and water doesn't taste the same-especially water. I made my father stop and buy juice yesterday, because water just seems to taste gross to me as of recently.

I don't know if the stopping of my cellcept has anything to do with all of these changes, aches, and pains I'm feeling. My sinus ct scan that I had done on Friday seemed to appear clear according to the doctor. Tuesday will be my hematology appointment. I still have a small cough. I still feel dizzy, and I walk slowly and carefully like an old woman.

I feel guilty. I don't want to be at home doing nothing. I want to be doing what I anticipated I'd be doing at this point in time- going to school and going to work. With school there are always a lot of group projects and assignments, and I hate feeling like I'm out of the loop. I hate feeling like I'm putting undue stress on others, or like I'm letting others down. If I toughed it out and went to school, I couldn't even carry my backpack with the pain I feel in my arms. I couldn't walk around for any long periods of time with the pain I feel in my legs.

And, on top of everything, my Mommy is in Nigeria. Oh how I miss and need her.

My Dad has been a saint. He is doing everything for me, down to making my meals, getting me water, calling me when he's not home to make sure I'm ok, etc.

I just wish WHATEVER this underlying illness or illnesses are that are affecting me so badly would just leave me alone...and if it must bother me, why can't it wait until the summer when I'm done all of my HR courses? It's not enough to just pass my courses...I have to pass them and I have to do well.

Man, this seriously, seriously sucks.

Wednesday, February 10, 2010

I'm still here....

...just dizzy and tired from this ear infection, cough/cold, and antibiotics.

Will blog later

Saturday, February 6, 2010

Shady Business

I sit here exhausted, but I wanted to give an update.

My hemoglobin is on a downward slope. In the span of 24 hours, it went from 68 to 62 to 54 (6.8 to 6.2 to 5.4). I have had bloodwork done for many different viruses, so I suppose when I go back to the hospital on Monday morning they'll be able to tell me if I have any of these viruses. Also, what started off as a mild blockage in my left ear turned into severe blockage in both ears and terrible pain.

The doctor that saw me (a doctor I had never met before) and told me that my severe ear (and subsequently, face, neck, behind the ears,etc) pain was probably due to my low hemoglobin. I was in some of the most severe pain I had ever experienced. The idea that he attributed it low hemoglobin was, quite frankly, shocking.

When he came back for a second time, i told him how severely I was in pain. I told him this as I squinted through the tears in my eyes from all the pain I was in. Again, he told me that it was probably my hemoglobin and asked me if I had tylenol. I told him that I took tylenol and it did nothing for me. He said i would probably feel better after I finish getting the blood I was currently receiving from the transfusion.

I was shocked. Was he really going to allow me to sit here, in severe pain and crying, based on the fact that "maybe" the transfusion would help...??

I continued to squirm around and cry quietly as the home hemo unit was quite full and I didn't want to "bother" anyone. One nurse came around and saw the pain I was in. She put her hands on both sides of my face starting from my temples and gentle pushed her hands into my face. She gently moved down my face and kept doing this. It seemed to slightly bring relief to the searing pain in my face.

When my nurse came around and I told her again about my severe pain, she asked me what the doctor had said and if he had looked in my ears. I told her what he had said about the hemoglobin, and that he didn't bother to look at my ears. In anger, I also said "NOBODY HERE IS HELPING ME!!" rather loudly. My nurse went off to call the doctor, who by then had already left the home hemo unit.

When he came back, do you know what he said to me? He said "How can I help you? What's wrong". Seriously?

I repeated "My ears hurt." I went on to tell him it was my entire face hurting. He was still convinced that it was my hemoglobin but he finally agreed to look into my ears. When he looked, he said both of my ears/ear drums were clear. That said, he finally"relented" and authorized the ordering of "Tylenol 2". I knew this wouldn't help either...but what could I do?

The worst part was that the tylenol needed to be ordered from the pharmacy. My nurse told me 10-15 minutes. Ugh.

After about 20 minuts, I asked again. The nurse then told me the pharmacy said 30 minutes. "Why so long??" I asked, now upset. I had sat there for hours in pain being paid no mind, and now i'm being told I have to wait a total of nearly an hour for pain medication?? She told me that it is what the pharmacy said but she would follow up. A few minutes later my nurse informed me that another nurse was on the way to pick it up.

I got it, I took it, and 30-45 min later, as I suspected, no difference.

Oh, did I forget to mention that this doctor had asked me to STOP taking my cellcept/mmf because it can sometimes lower your hemoglobin?? Oh wait, you mean the medication I've been taking without incident for about 12-13 years???

I've had a situation where a doctor I never met before in my life came out of nowhere and started stopping/changing stuff. 2 weeks later I was in the hospital...getting wheeled in a hospital bed to the procedure room where they would be entering a cathetor for dialysis into my chest. I always knew my kidneys would fail, but this trigger happy doctor certainly sped up the process for me.

I thankfully got a second opinion. After being home for a bit and massaging my temples from the severe pain I was in, I began to feel fluid trickling down my right ear. I grabbed a tissue and saw the clear fluid that was slowly coming down my ear on the tissue. It also started to come out of my other ear too. Um, weren't both of my ears "clear"?? After speaking to another healthcare professional, I was able to get ear drops which made me feel a million times better.

Soooo irritated. I wonder what I will say on Monday when I go back for a follow up??

Tuesday, February 2, 2010

Hemoglobin CRASH

Ok, now I'm worried.

I did my monthly bloodwork today. I did it this morning, dropped it off at the hospital, then headed to school to sign up with the HRPA. Thank goodness class was cancelled today because I totally would not be able to make it through the day.

Well my nurse called me just a few moments ago. My hemoglobin is currently 68 (or 6.8). This is horribly low..a bit over HALF of what it should be. I have been feeling exhausted these past few weeks. What is going on here? What's happening to me?

PLEASEEEEE don't be a flare....PLEASEEE! This is bad news all around. If its not a flare and its a matter of me getting a blood transfusion, then that means more antibodies...and more problems when trying to get a kidney.

Gosh. The life of a 20-something with lupus indeed.
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