I know I should be sleeping in preparation for my group meeting tomorrow, but I can't sleep. I finally had my long awaited follow-up appointments with the rheumatologist and neurologist this week. Some good news, some bad. The good news, I don't have lupus. I wasn't surprised to get that news, but was a little peeved that I had to take a 30 minute bus ride, wait an hour, and pay $20, just to have 2 minutes with the rheumatologist. She's really sweet and was very thorough, but all she had to say was, "you don't have lupus" and that could have been done over the phone.
Today's appointment with Dr. C was much more eventful. I still had to wait an hour, but I got my money's worth. Since they never seem to listen to me, I came to the appointment with a list of my current symptoms that I gave the doctor as soon as she walked in the door. I included descriptions of each symptom and told her I wanted help with all of them. We discussed them and then she explained that she only felt comfortable working on two at a time and we can work on the list over the next few appointments. She suggested which two she thought were most important (bladder control and depression), but gave me the power to choose which ones I wanted to work on. I explained that my ultimate goal is to get back to work and my memory loss and current level of depression are making it really difficulty to do anything. I mean, I'm terrified of getting lost again and I'm too depressed to muster a smile most days, so leaving the house only happens when absolutely necessary. That's not exactly compatible with most work environments.
Dr. C said there isn't much she can do for memory loss directly, but believed that my mood could be tied into the memory problems. She wants me to see another doctor at her clinic to be evaluated and determine the best course of action for the depression (he's a neurologist and psychiatrist). In the meantime, she wants me to start an anti-fatigue medicine that has helped some of her patients with their cognitive difficulties and mild depression. I see the other doctor in three weeks, though I wish I could have seen me today. Hopefully, the anti-fatigue stuff will help.
Since we're hitting three list items with one pill, she let me pick one more item and I chose bladder. I recently had an accident at home and it's honestly just as hard to deal with, emotionally, as accidents in public. I told her that I have some incidents of sudden emptying, but mostly my problem is urgency that leads to leaking when I can't find a restroom in time. She wasn't sure if my perception of the problem was correct and said that it's more common that I am not fully emptying my bladder when I pee and that could be leading to my problems. To determine the cause of my problem she needed to ultrasound my bladder when full and after I peed. Of course I'd emptied my bladder just before seeing her. She still wanted to do the ultrasound during that visit and presented me with a 12 oz cup of water. I drank 4 full cups before we were ready to do the ultrasound. My bladder was in fact emptying properly and she prescribed and once daily oral medicine to help with the urgency.
All-in-all the appointments went well. I usually take a list with me, but it made a huge difference to give a list to the Dr. and not wait for her to transcribe what I was saying. Or what she thought I was saying. Next time I want help with insomnia and pain.
Friday, November 20, 2009
Tuesday, November 17, 2009
I Need Sleep
I know that my struggle with insomnia is old news. I had trouble sleeping long before my diagnosis and I'm sure it will continue until the end of time. Unfortunately, my ability to function on little sleep or poor sleep has greatly diminished. Without adequate sleep, my symptoms are a nightmare. From the moment I wake up, my legs burn and tingle, I feel dizzy, my vision is unstable, and I have cognitive difficulties. Basically, when I wake up I feel similar to how I feel at the end of a long day. Not good.
This is especially true after my most recent episode (we aren't calling it an exacerbation yet) which has left me needing at least 8 solid hours of restful sleep. This isn't much of a problem usually because my schedule allows me to set sleep hours that fit my need. I lay down around 10 pm and on most days I sleep until 8:30 am (sometimes later).
The problem has actually become creating and maintaining the conditions I need in order to have a restful night of sleep. Even with a sleeping aid, body temperature, ambient noise, and room darkness can be sleep deal breakers. Sometimes it means needing 2-3 hours to get over the hump and fall asleep, but more often, it means spending the whole night in a semi-sleep state that results in the same problems as not sleeping plus a weird mental fog. It makes me anxious and I feel trapped inside myself.
I am battling this today. I am out of sleeping aids and even with all my efforts to exhaust myself, sleep is getting more and more difficult. The past few nights I was patient and made it over the hump. But last night I was never able to get over the sleep hump and spent the whole night trying to block out my surroundings and get comfortable. Last night was especially bad because everything bothered me. I even tried to sleep on the couch, but that didn't work and caused more problems. Now I'm in the fog. Ugh! I had so much I wanted to do today, but I don't have the strength or stamina for any of it. Maybe tomorrow, if I can get some sleep tonight.
This is especially true after my most recent episode (we aren't calling it an exacerbation yet) which has left me needing at least 8 solid hours of restful sleep. This isn't much of a problem usually because my schedule allows me to set sleep hours that fit my need. I lay down around 10 pm and on most days I sleep until 8:30 am (sometimes later).
The problem has actually become creating and maintaining the conditions I need in order to have a restful night of sleep. Even with a sleeping aid, body temperature, ambient noise, and room darkness can be sleep deal breakers. Sometimes it means needing 2-3 hours to get over the hump and fall asleep, but more often, it means spending the whole night in a semi-sleep state that results in the same problems as not sleeping plus a weird mental fog. It makes me anxious and I feel trapped inside myself.
I am battling this today. I am out of sleeping aids and even with all my efforts to exhaust myself, sleep is getting more and more difficult. The past few nights I was patient and made it over the hump. But last night I was never able to get over the sleep hump and spent the whole night trying to block out my surroundings and get comfortable. Last night was especially bad because everything bothered me. I even tried to sleep on the couch, but that didn't work and caused more problems. Now I'm in the fog. Ugh! I had so much I wanted to do today, but I don't have the strength or stamina for any of it. Maybe tomorrow, if I can get some sleep tonight.
Sunday, November 8, 2009
Humiliating.
Today I attended a National MS Society sponsored function for African Americans with MS. I was interested in this event because I don't know any other African Americans (AA) with MS and have not been able to determine if my ethnicity has any bearing on the progression of the disease, primary symptoms, etc. As with all things MS, there is no conclusive evidence that ethnicity has any bearing on disease progression. Of course there is some genetic factors that make MS less likely in AA families, but since MS is not purely genetic, ethnicity is only a piece of a very large and complicated puzzle.
However, the first speaker (a prominent AA neurologist) did mention something interesting. She said that AA tend to have more eye problems and more waist-down numbness and pain. This was really interesting to me since I tend to have a lot of eye and leg problems. I also noticed that almost everyone at the meeting used a cane or crutches and the others were in wheel chairs. This didn't make me feel good at all.
The second speaker was a researcher and his presentation focused on the genetics behind finding the cause of MS and even with my science background, I found him hard to follow. They also served lunch while he spoke, which meant a lot of focus on eating and very little focus on the science.
The final speaker was a marriage and family therapist with MS and he was there to discuss the emotional side of MS. I was looking forward to this portion of his talk until I received the handout. I identify as a Christian and strongly believe that my faith helps me deal with the challenges of MS. However, I DO NOT believe that I have MS because I lack faith. I DO NOT believe that prayer will heal me. I DO NOT believe that I should turn to God and not a doctor when I encounter disease complications. After seeing the handout, I wanted to leave, but decided to stay and give the speaker a chance. Perhaps the statements on the page were going to be debunked and he was going to support a healthy mix of religion and medicine. But he didn't. When he started saying that a person may think they have faith in God, but the presence of MS is proof that they've faltered, I packed up my things and walked out. I honestly don't care what people personally believe, but I refuse to be shamed and blamed for being sick. No thank you. I plan to share my displeasure with the NMSS tomorrow.
The meeting location was about 10 blocks from my house, so I walked there. I used both crutches and took my time getting there. It took me 20-30 minutes, and I had enough time to get my bearings before the speakers started. The journey home didn't go so well. I was exhausted when I left and fatigue heightens all of my symptoms. I stepped out of the building, looked around, and had no idea where I was. I stood there a moment trying to get my bearings and figure out which way to go, but I couldn't remember the right direction. I walked around a bit and finally stopped someone to ask for help. The very nice lady was more than happy to help me, she just needed to know where I was going. "Jackson Street," I told her. "Jackson and what?" I opened my mouth and nothing came out. "Do you know the address?" I said, "Yes, I'm going home." And I just stood there, trying not to panic, and trying to remember my address or my cross street. I started to cry. She smiled and said, well let's go down to Jackson and see if anything is familiar. Of course, once we got to Jackson, I was still lost. And then my brilliant new friend asked me if I had any identification with my address on it. YES!! My driver license has my current address on it! She graciously walked me to the front of my building and after I said a million thank yous, she waited until I got in the door and waved goodbye.
I can't tell you how terrified, embarrassed, humiliated, and demoralized I felt when I couldn't get myself home. I've always been afraid of getting lost, but there's a big difference between being lost and not even knowing where you're going. I've been afraid of this happening, but didn't think it would happen so soon. I'm trying to remain positive and not let this one incident discourage other solo ventures out of the apartment, but I'm shaken up. I don't like the severity of my current symptoms (I had a fall recently and my pain is out of control) and I think my doctors need to reevaluate my treatment and come up with better ways for me to manage. Because, I'm trying to cope, but I can't live like this.
However, the first speaker (a prominent AA neurologist) did mention something interesting. She said that AA tend to have more eye problems and more waist-down numbness and pain. This was really interesting to me since I tend to have a lot of eye and leg problems. I also noticed that almost everyone at the meeting used a cane or crutches and the others were in wheel chairs. This didn't make me feel good at all.
The second speaker was a researcher and his presentation focused on the genetics behind finding the cause of MS and even with my science background, I found him hard to follow. They also served lunch while he spoke, which meant a lot of focus on eating and very little focus on the science.
The final speaker was a marriage and family therapist with MS and he was there to discuss the emotional side of MS. I was looking forward to this portion of his talk until I received the handout. I identify as a Christian and strongly believe that my faith helps me deal with the challenges of MS. However, I DO NOT believe that I have MS because I lack faith. I DO NOT believe that prayer will heal me. I DO NOT believe that I should turn to God and not a doctor when I encounter disease complications. After seeing the handout, I wanted to leave, but decided to stay and give the speaker a chance. Perhaps the statements on the page were going to be debunked and he was going to support a healthy mix of religion and medicine. But he didn't. When he started saying that a person may think they have faith in God, but the presence of MS is proof that they've faltered, I packed up my things and walked out. I honestly don't care what people personally believe, but I refuse to be shamed and blamed for being sick. No thank you. I plan to share my displeasure with the NMSS tomorrow.
The meeting location was about 10 blocks from my house, so I walked there. I used both crutches and took my time getting there. It took me 20-30 minutes, and I had enough time to get my bearings before the speakers started. The journey home didn't go so well. I was exhausted when I left and fatigue heightens all of my symptoms. I stepped out of the building, looked around, and had no idea where I was. I stood there a moment trying to get my bearings and figure out which way to go, but I couldn't remember the right direction. I walked around a bit and finally stopped someone to ask for help. The very nice lady was more than happy to help me, she just needed to know where I was going. "Jackson Street," I told her. "Jackson and what?" I opened my mouth and nothing came out. "Do you know the address?" I said, "Yes, I'm going home." And I just stood there, trying not to panic, and trying to remember my address or my cross street. I started to cry. She smiled and said, well let's go down to Jackson and see if anything is familiar. Of course, once we got to Jackson, I was still lost. And then my brilliant new friend asked me if I had any identification with my address on it. YES!! My driver license has my current address on it! She graciously walked me to the front of my building and after I said a million thank yous, she waited until I got in the door and waved goodbye.
I can't tell you how terrified, embarrassed, humiliated, and demoralized I felt when I couldn't get myself home. I've always been afraid of getting lost, but there's a big difference between being lost and not even knowing where you're going. I've been afraid of this happening, but didn't think it would happen so soon. I'm trying to remain positive and not let this one incident discourage other solo ventures out of the apartment, but I'm shaken up. I don't like the severity of my current symptoms (I had a fall recently and my pain is out of control) and I think my doctors need to reevaluate my treatment and come up with better ways for me to manage. Because, I'm trying to cope, but I can't live like this.
Thursday, November 5, 2009
Progress.
I had a really productive day. Today is exactly one month after I was released from the hospital and the rheumatologist wanted me to get a full series of blood tests done today (to determine if I also have lupus). Since I hadn't been out by myself yet, Nilaja offered to drop me at the lab so that I only have to sit through one bus ride. The thing is that she leaves for work at 6:50 am and in order for us both to be ready in time, I set my alarm for 5:30 am. After I got over the shock of hearing my alarm that early in the morning, I managed to shower and get dressed without incident.
Nilaja dropped me in front of the building and I made it up to the first lab just as it was opening. I knew there were a lot of tests to be done, but I wasn't prepared for them to take 7 full vials of blood and a urine sample. Luckily, this lab is really good at finding my veins so it was painless. I was there for less than 20 minutes and proceeded to the second lab for another test. (I didn't know that I would have to go to two labs, but the first lab isn't equipped to do cryoglobulins. I'm glad I chose a site with two different labs in the same building.)
This time they only needed to take one vial of blood, but the experience was much worse. After explaining to the phlebotomist that I'd just had a lot of blood drawn from one arm and my veins roll, she rolled her eyes and said it's easier for her to draw from my right elbow. Well, if I learned one thing from this last hospital stay, it's that I have don't have to let anyone do anything to my body that I don't agree with. And when she pulled back the bandage and started poking at the still bloody spot on my arm, I pulled away and asked for someone else. She then explained that she was there alone for another hour IF the next person shows up or I could go somewhere else but she wasn't sure what labs in the Bay Area did that test. I smiled and said, "I'll wait." Empowerment feels damn good! Of course, just as I gather my things and start toward the reception area, another phlebotomist (a supervisor) comes in the door and manages to find a vein and draw the blood before I could finish complaining.
I didn't secure a ride home from the lab, so I took the bus. This was my first time on the bus since September and it went well. I'm not sure I should have been on a bus yet, but I made it home safely. I even stopped for a nice big cup of mostly decaf coffee (I dumped out about half and swapped the rest for milk and sugar). Of course the small amount of regular coffee they mixed into my decaf kept me buzzing all day long. And you know how frustrated I get when I want to sleep but can't.
I spent most of the day watching tv, but took a long break from that to apply for few jobs. That's right folks, I'm trying to get back to work already. Once again, I'm not sure I'm ready or how I'll make it through the day, but I have to try. I can't be afraid to go back to work. If I don't make it, oh well, at least I put in the effort. So far, I've applied for part-time and full-time administrative assistant and receptionist positions, since I think those will be the easiest for me to transition into as I rebuild my skill set. I sent three resumes today and will keep looking for other opportunities until I find something.
Nilaja dropped me in front of the building and I made it up to the first lab just as it was opening. I knew there were a lot of tests to be done, but I wasn't prepared for them to take 7 full vials of blood and a urine sample. Luckily, this lab is really good at finding my veins so it was painless. I was there for less than 20 minutes and proceeded to the second lab for another test. (I didn't know that I would have to go to two labs, but the first lab isn't equipped to do cryoglobulins. I'm glad I chose a site with two different labs in the same building.)
This time they only needed to take one vial of blood, but the experience was much worse. After explaining to the phlebotomist that I'd just had a lot of blood drawn from one arm and my veins roll, she rolled her eyes and said it's easier for her to draw from my right elbow. Well, if I learned one thing from this last hospital stay, it's that I have don't have to let anyone do anything to my body that I don't agree with. And when she pulled back the bandage and started poking at the still bloody spot on my arm, I pulled away and asked for someone else. She then explained that she was there alone for another hour IF the next person shows up or I could go somewhere else but she wasn't sure what labs in the Bay Area did that test. I smiled and said, "I'll wait." Empowerment feels damn good! Of course, just as I gather my things and start toward the reception area, another phlebotomist (a supervisor) comes in the door and manages to find a vein and draw the blood before I could finish complaining.
I didn't secure a ride home from the lab, so I took the bus. This was my first time on the bus since September and it went well. I'm not sure I should have been on a bus yet, but I made it home safely. I even stopped for a nice big cup of mostly decaf coffee (I dumped out about half and swapped the rest for milk and sugar). Of course the small amount of regular coffee they mixed into my decaf kept me buzzing all day long. And you know how frustrated I get when I want to sleep but can't.
I spent most of the day watching tv, but took a long break from that to apply for few jobs. That's right folks, I'm trying to get back to work already. Once again, I'm not sure I'm ready or how I'll make it through the day, but I have to try. I can't be afraid to go back to work. If I don't make it, oh well, at least I put in the effort. So far, I've applied for part-time and full-time administrative assistant and receptionist positions, since I think those will be the easiest for me to transition into as I rebuild my skill set. I sent three resumes today and will keep looking for other opportunities until I find something.
Sunday, November 1, 2009
Grateful.
I'm having a really bad day, but I don't want to talk about it. It's so easy to get bogged down with how bad things are and completely ignore the good things in my life. So, I decided to make a list of 10 good things in my life and all the ways I am grateful.
1. My wife. I feel happy/lucky/blessed to have someone who supports me through everything. Things have been rough over the past few weeks and she always steps up in more ways than I could ask. I especially appreciate all the shopping she does as I still don't have the stamina for a trip to the grocery store.
2. My mother's condition is treatable and follow up appointments yielded lots of favorable results. Once again, I don't have consent to disclose her condition, but I can say that my whole family is breathing a sigh of relief. The issue isn't resolved, but we have more answers and she has an excellent prognosis.
3. My sister. I talk to my sister a few times a week and it's a necessary mood booster. We also have very similar beliefs and morals, so if something is bothering one of us, it's easy to rant and release frustration.
4. My friends, especially Sophia, Susan, and Jamie. I think I've mentioned before that it's hard for me to ask for help and I like to do things for myself. Unfortunately, no matter how much I want to be the self-sufficient control freak, I am now facing challenges that require assistance and I'm grateful to have people around me that can help me when I need it. I appreciate all the help and support whether it was providing rides, company, information, reassurance, or advice.
5. My cane/crutches. Most of my problems lately have involved mobility and I'm grateful that I have my cane and crutches. Without them, I wouldn't be able to get around the apartment.
6. Betaseron co-pay assistance program. I'm back on the injections (boo!), but recently received confirmation that I have a $0 co-pay each month. Previously, I paid $50/month, so this is incredible.
7. Decaf coffee, peppermint tea, and baked potatoes. All three have made me exceedingly happy today.
8. Sleeping aids and techniques. Never underestimate the power of a full night of sleep.
9. Critical reading material. I mostly read online articles and love anything that challenges racist, sexist, ableist, sizest, homophobic, transphobic, and xenophobic aspects of society. I especially love having Facebook friends that link me to articles that keep my mind alive (though, I wouldn't mind not having things to read).
10. Health Insurance. I'm not sure what my life would be like if we didn't have health coverage. The coverage isn't perfect and I still pay a rather healthy amount out of pocket, but it's a huge relief to be able to go for care when I need it and not worry about footing the whole bill. We were uninsured growing up, so I know how detrimental the fear of medical bills can be on any family. I can't imagine going through all this without coverage.
1. My wife. I feel happy/lucky/blessed to have someone who supports me through everything. Things have been rough over the past few weeks and she always steps up in more ways than I could ask. I especially appreciate all the shopping she does as I still don't have the stamina for a trip to the grocery store.
2. My mother's condition is treatable and follow up appointments yielded lots of favorable results. Once again, I don't have consent to disclose her condition, but I can say that my whole family is breathing a sigh of relief. The issue isn't resolved, but we have more answers and she has an excellent prognosis.
3. My sister. I talk to my sister a few times a week and it's a necessary mood booster. We also have very similar beliefs and morals, so if something is bothering one of us, it's easy to rant and release frustration.
4. My friends, especially Sophia, Susan, and Jamie. I think I've mentioned before that it's hard for me to ask for help and I like to do things for myself. Unfortunately, no matter how much I want to be the self-sufficient control freak, I am now facing challenges that require assistance and I'm grateful to have people around me that can help me when I need it. I appreciate all the help and support whether it was providing rides, company, information, reassurance, or advice.
5. My cane/crutches. Most of my problems lately have involved mobility and I'm grateful that I have my cane and crutches. Without them, I wouldn't be able to get around the apartment.
6. Betaseron co-pay assistance program. I'm back on the injections (boo!), but recently received confirmation that I have a $0 co-pay each month. Previously, I paid $50/month, so this is incredible.
7. Decaf coffee, peppermint tea, and baked potatoes. All three have made me exceedingly happy today.
8. Sleeping aids and techniques. Never underestimate the power of a full night of sleep.
9. Critical reading material. I mostly read online articles and love anything that challenges racist, sexist, ableist, sizest, homophobic, transphobic, and xenophobic aspects of society. I especially love having Facebook friends that link me to articles that keep my mind alive (though, I wouldn't mind not having things to read).
10. Health Insurance. I'm not sure what my life would be like if we didn't have health coverage. The coverage isn't perfect and I still pay a rather healthy amount out of pocket, but it's a huge relief to be able to go for care when I need it and not worry about footing the whole bill. We were uninsured growing up, so I know how detrimental the fear of medical bills can be on any family. I can't imagine going through all this without coverage.
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