June 18, 2013: Depression Reigns

Depression has reigned for two days. It’s so difficult to be somewhere where I just do not and cannot fit in no matter how hard I try. I must find a way to get away from the empire at which I am employed.

I’m an afterthought in our section –when I’m thought of at all. People think I’m joking when I say I feel like the red-headed stepchild of my agency section. I’m dead serious.

I’m so tired of fighting everything every day. I fight with myself, I fight myasthenia gravis symptoms, I fight everyone (except my family who has seen and heard me at my worst) regarding my illness everyday, … Myasthenia gravis is an “invisible” illness. It bites! No one gets how this thing feels from one minute or hour to the next. I don’t care that I have a fake smile plastered on to please the masses and to avoid the, “Smile, it’s not that bad” comments when I don’t smile. Yes, you idiots, it IS that bad sometimes. Deal with it! Try struggling to lift your legs to get in your car because your leg muscles are very weak. Try trudging across a parking lot to walk into a building on a hot and humid day feeling as if your legs, which are lugging around invisible 100-pound weights, are going to collapse underneath you at any moment. Try looking at yourself in the mirror at the end of the day and looking at a face that looks as if it has been the victim of a stroke because the muscles have lost their tone during the day. Try reading something while seeing double or experiencing extremely blurry vision. Try talking loud enough for people to hear you, but you can’t because your diaphragm and/or throat muscles are too weak to help you project your voice.

Try holding a pen or pencil to write only to discover that you can’t grasp it. Try pulling your slacks up in the morning and struggling to curve your hands enough to be able to grasp and pull them up. Same with putting on socks or shoes! I drop things often because my muscles just give out in my hands and arms. Don’t tell me, “It’s good exercise” for me to have to stop and bend over to pick up whatever I dropped. That is not the damn point. It’s frustrating, plus I don’t have a lot of money to replace crap I break. Just because I’ve gained 45 pounds while being on this stupid medicine called prednisone doesn’t mean I’m lazy and need to exercise or that I need to go on one of the many diet fads going around. If I could exercise the way I used to or even half the way I used to, I would. Four miles of walking every other day and weight lifting the days in between—it was awesome! Exercise these days makes my muscle weakness worse. Read about and talk to other people who deal with this disease you ignorant, stupid, assuming idiots!!!!!

I’m trying so hard to keep it together. I’m trying to be optimistic about future treatments—even possibly chemo. It’s very difficult given the one treatment I was so excited about in February nearly killed me. Chemo itself could kill me—if the crap I’m fighting every day these days doesn’t kill me first.

I need a break, desperately. It’s hard to take a break when you don’t have leave available to use for vacation time thanks to having to use it for sick leave as you accrue it.

Tomorrow’s the first day of our annual functional exercise at work. God help me maintain my composure!

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June 13, 2013: Wall of Weakness Punched ME in the Face!

Got up for the day feeling kind of ok. By the time I got dressed, ate breakfast, and about to put on my shoes to walk out the door, sudden overall weakness hit me along with double vision. Seriously???!!! Why???? This is so frustrating! I am so tired of dealing with this. It is not fair. Now I’m fighting guilt for not being able to go to the office today. I have so much work to finish. Even if I could work from home, I wouldn’t be able to do anything thanks to double vision.

Talk to me or I’m going to punch you in the face!

No, I  didn’t threaten the Austin nurse. but I did call again on June 10 to insist on her reading the results to me. She did. The tests all reconfirmed myasthenia gravis. Now how hard was that? Seriously! Ok so what next?

The San Antonio doctor recommends I try CellCept, which I’m unclear on whether or not it’s a form of chemotherapy or if it’s another type of immune-supressant. My Austin neuro had mentioned it before but had also highly recommended trying Imuran, which I know is a chemo drug. I’m not too thrilled to try either one knowing what a lot of people experience on them. My poor system is waaaaay sensitive. I can handle hair loss, but I can’t handle digestive upset–especially of the nausea kind. I don’t look good in green.  I’ve had a challenging enough time with Mestinon and prednisone creating nausea. I should buy stock in ginger ale and the ginger grower’s association (is there one of those?).

I asked the nurse if I could pick up a copy of my reports, she hesitated but agreed to leave copies of my labs up front for me to pick up the next day. I picked them up this morning. Now, I have to wait until I can see my Austin neuro to make an official decision on what to do next. I know it’s ultimately my decision. At this point, I have no idea what decision I will make.

June 6-7, 2013: Still waiting

I decided to save myself more burst blood vessels in my throat by not calling the San Antonio people again yesterday/the day before. I called my Austin neurologist’s office and discovered they had received my results this morning. Well, … my neurologist is now on vacation and will be on vacation until near the end of the month. Did this sit well with me? No. Not at all. I insisted at least the nurse read the results to me. She was hesitant and said she’d call me back. Not what I wanted to hear at all.

 

June 7: I heard nothing from the nurse. I called them around lunch time. Totally forgot their office closes early on Friday!!!@#$#

June 3, 2013: Follow me to the Dark Side

As I mentioned in my Preramble, I’m typically cool and calm on the outside, but there’s usually a volcano bubbling over on the inside–with the occasional eruption. Today I had to—yes, I had to—go to the dark side and erupt by yelling at a medical assistant over the phone because their office has not cooperated with me or my primary neurologist in sending us my latest lab and test results.

As noted in an earlier post, I saw another doctor on May 20 to have a single-fiber EMG and more antibody testing to see if she could find something else going and/or double check if indeed my situation is MG. I also had a bone density scan while I was there since I had not had one.

The day I left their office, they told me that my results would be ready by the end of the week at the latest and that if they did not get back in touch with me with my results, they would have them ready for my primary neurologist to review with me during my next appointment with him (today, June 3).

I called the San Antonio office three days after the tests. No results yet. The nurse finally called me on May 30 to let me know that my bone density test showed some anomalies and that I needed to start taking calcium with vitamin D. Ok, fair enough. She said I needed to see an endocrinologist she wanted to refer me to. Well, I explained I could arrange that in my city with my primary doctor. I asked about my other results and was told she didn’t have anything else ready to share with me. At this point, it’s been 10 days, 7 days if you take out the weekend and the holiday.

I call back and left a message early Friday, May 31 with the nurse. No response. Well, it’s June 3 and I have my follow-up appointment with my primary neurologist. I go in, he comes into the room and says he has not yet received my results. His recordkeeper called their office while I was there and they came up with some lame excuse that they had not received a referral from them to see me so they had not sent my results. Absolutely not true! I saw the referral in their office while visiting the new neurologist, plus, I would not have been seen by them had they not had a referral. My primary neuro, just to play along, sent a copy of the initial referral to them and requested my results. By the end of the day, they still had not received anything.

I got home, very ticked off, checked my e-mail and saw that I had a message regarding an update to my online records file where the second neurologist would post my lab results. I thought to myself, “Great! They finally decided to send my info.” I logged into the system and saw the names of the tests—except the EMG—and noticed the date, doctor’s name, and the phrase “final results.” I click on them and there’s nothing in there. Not a thing! Then the rage sets in and I pick up the phone and call the folks in the neurology department in San Antonio and gave them a piece of my mind about what I thought about them not sharing my info with me or my doctor and how their system either did not work or that some incompetent person forgot to upload the appropriate files to my medical page for me to see.

The medical assistant claimed to have a note on my file saying that the doctor would go over my results with me when she saw me next. I’m not scheduled to follow up with her until September!!! The rage continues. I told the lady that there is no way I’m going to survive until September because either what’s happening to me will kill me or I’ll take myself out. (Note: I wouldn’t take myself out no matter how bad things get.) I just blurted that out. Anyway, she stammered that she would have the nurse call me to see if she could provide more info.

If I hear nothing else from the lovely folks holding my records by midday tomorrow, I will call again—calmly—and tell them that I will drive all the way down to their office the next day to pick up copies of my records to take to my primary neuro’s office for review. These people are not going to keep me in the dark. If it’s good news, bad news, or indifferent, my neuro and I need to know. He’s holding off additional treatments until he has a better idea of what’s happening. I’m holding on with Mestinon and prednisone right now and they’re really not cutting it.

When someone places the letters E, M, and G together in front of you … run away!!!

May 20, 2013: Today was the day of the visit to another doctor for a second opinion regarding my myasthenia gravis diagnosis last year. My neurologist here in Austin has been working with me for nearly a year to stabilize my symptoms. I started out on Mestinon. It has done very little for me. It helps my eyes but shreds my stomach. After a couple of months, he started me on prednisone–evil, evil prednisone. It has done very little for me outside of adding 45 pounds to my frame!@#$$%# It could be worse, I guess. I could have the increase in appetite that most people get from taking prednisone. I’ve not had that side effect. Just a ton of extra fluid building up all over my body. I swear I slosh when I walk. Then the last medicine he tried on me, IV-Immunoglobulin (IVIG) earlier this year nearly killed me–literally. I ended up with acute hemolytic anemia thanks to an antibody reaction, which caused my red blood cells to self destruct. I ended up in the hospital for three days. This visit made me hate hospitals even more than I did before that dreadful trip. But I digress…

All of the above events have led me to see a set of specialists in San Antonio to see if I truly have MG, if there’s anything else going on with it or instead of it, and what they see as the next step for treatment.

I met the first doctor. Nice lady, a little distracted. Apparently something was going on outside that kept the nurse coming into the office while I visited with the doctor. She left the room a couple of times.

After visiting with her, I was shuffled off to another doctor who would conduct the EMG (electromyograph/nerve conductivity study). I had an EMG last year with my current doctor. It was not pleasant, but I survived. I had my mind set for that level of pain so I was mentally prepared for what was about to happen…or so I thought.

This doctor was very nice and very, very cute. Those adjectives changed to complete opposite words when the test started. I was so tempted to punch him! I made it through ~40 minutes of the 50-minute process and had to tell him to stop. The shock treatments on the hand, arm, and face were dreadful. The single-fiber EMG on the hand and arm sent me over the edge. There was no way that needle was coming near my face! The doctor asked if I wanted to take a break and continue. I told him hell no. I was literally in tears and not even ashamed of it. I barely said bye to the doctor. I promise you I will never endure another EMG. I now know my official pain threshold!

I later had a bone density scan and more blood work. Mind you, I was not very happy for the remainder of the day. Fortunately, a friend lives near the facility I visited. I went to his place to mentally recuperate before driving back to Austin.

Those people better have enough information from my torture session to tell me what’s up!

May 10, 2013

No work again. Still had fever 101, aches, weakness early this morning.

Fever finally broke around 4:30 p.m. I have not sweated so much at one time ever! Completely drenched! Spent the remainder of the evening drinking water and Gatorade—was terribly thirsty. I told coworkers I had fever but didn’t tell them everything (i.e., how bad was bad). I didn’t mention barely being able to walk for a couple of days because of MG weakness, the terrible head tremors, etc. They wouldn’t get it anyway. I should’ve emailed a pic of how terrible I was looking—uncombed hair, drooping left eye, crooked mouth.

I know I need to not care what others think about me or my abilities. I need to focus on what I can do and do it. I need desperately to take care of me because outside of my parents and a couple of friends, no one is going to come to my aid when I really, really need them—no matter how small the favor or request. I can’t count on it. I will always be an inconvenience to most people or I’ll be the thing they get to when they have time or it’s convenient for them. This is the reason I push myself to do things even when I shouldn’t. When I want something done, I want it done. Period. I will not let anyone chastise me for it. Period. I see through people’s words.