The 3 R's: Resting, Rehydrating, and Reading

I am FINALLY keeping food down on a consistent basis. Yes! I still have the nausea, but I can work through that. Now that I'm eating, I have enough energy to sit up for more than 10 minutes and I even spent most of the day sitting on the couch versus sleeping in the bed. But I'm not pushing my luck, for once. I'm fighting the urge to clean and organize the apartment. Instead, I'm resting. That's right, I am living amongst the chaos for the sake of my health and will not do any obsessive cleaning... until tomorrow. By then I'll have most of my energy back and can try to get into a routine again.

One of the things I always neglect when I get sick is my hydration. When I don't eat, I don't drink. I know I should, but I forget to go for water when I spend the day in bed. And to be fair, early in the week, I couldn't keep liquids down, so there wasn't anything sending me running for water. But now that I'm starting to feel better and eating, I'm so thirsty. In the past half hour I've downed two pints and I'm sure the next few days will see much of the same. I wonder if I should set a water alarm. I mean, I have alarms set for pills, injections, and, on bad days, food and bathroom breaks, maybe my memory needs that additional hydration reminder boost.

One of the few highlights of this week has been taking time to catch up on my Google Reader. At the beginning of the week I had 1000+(once you it 1000 they stop counting, but I'm estimating there were at least 1250 unread items) posts to read and I'm already under 400. I hadn't spent time reading since before the hospital visit and even though I made attempts to catch up before the wedding, not much was accomplished. So, I'm glad I'm getting through it all. So much happened in the past month and I was completely oblivious, but soon I'll be caught up and able to discuss current events soon.

F-ing Miserable

My stomach is messed up. Really really messed up. I can't stop puking and gagging. And even when something stays down, I spend HOURS completely nauseated and on the edge. You know what I mean? I have that feeling you get just before you puke -- watery eyes, lump in my throat, metallic taste --, but I don't puke. It's gotten so bad, that I've gagged up Pepto Bismol, the smell of food makes me gag, and now I'm afraid to eat. Good news: I don't have a fever. Bad news, I haven't lost my appetite. It's cruel really. I'm having all these cravings and if I think about the food too much, the gagging starts. I'm absolutely miserable.

Now I'm thinking that the hiatal hernia is getting worse. Did I mention that before? Well, while I was in the hospital, Dr. Cooper ordered an endoscopy to figure out why my stomach was reacting so violently to the steroids. The result was that I had a hiatal hernia, but I was told that it is small and a month or two on a few (three) stomach meds would alleviate the nausea and heal the hernia. Until the wedding day, I took the pills religiously. There's one I take 4 times a day, 1 hour before food or two hours after. The second has to be taken before eating, three times a day, so I take it with the first pill. The last one is easy peasy, I take it once a day with my vitamins. There were a couple days where I didn't get them all in, but something is better than nothing. And honestly, once or twice out of a month shouldn't have led to me being so ill.

So, I'm going to make an appointment with the gastro that did the endoscopy and try to figure out what's going on. I'm having a lot of anxiety around this because I don't want him to say that I need surgery and I really can't afford more care right now (I already owe him money). But I can't continue like this much longer. I'm currently force feeding myself chicken soup because I nearly passed out in the shower a little bit ago (a shower I wouldn't have needed if my MS wasn't also playing with my bladder control today). Hopefully, they can see me tomorrow or Friday.

In other news, I've decided that I need to start working again. I know that sounds absolutely ridiculous after everything I've just written, but what I get from the state isn't enough to make ends meet. And honestly, the anxiety from all the debt and bill-worry is making me sicker than sitting behind a desk a few days a week. Plus, I think it will be good for my brain and general mood. Unfortunately, finding jobs is incredibly difficult right now and then when you add in my limited stamina and abilities, my options get pretty slim. But, I'm gonna stay positive and if anyone local has leads on part-time desk work or telecommuting jobs, please email me.

Back to bed

I've been trying to get up the strength to do a proper update, but it just isn't happening. My body is on full revolt. In addition to my typical MS symptoms, I'm having a hard time keeping food/drinks down, my entire left side hurts, and I'm so tired that I can hardly keep my eyes open. I spent the last two days sleeping in bed and I can already tell that today will be another one of those days. I makes me want to scream! I can't wait for this cycle to break.

Revenge

I know I haven't written about the wedding or all the fun I'm having, but I have to tell you that my body has started to revolt. I had complete body cooperation until 9:30 pm on Sunday. Actually, my body was better than it had ever been! I danced non-stop for over an hour without an inkling of pain, numbness, tingling, dizziness, or lightheaded-ness. Once I did start to feel icky, it came on slowly and coincided with the party winding down. It was unbelieveable that I lasted as long as I did. I actually expected to be in the wheelchair after the party and in bed all day Monday, but I woke up with all my vision and no problem with my legs at all.

My symptoms remained relatively nonexistent until last night. I started having a lot of left shoulder/arm pain and weird left foot pain, that didn't respond to any of the OTC pain relievers that I tried. And then I woke up unable to bear weight on my left foot. I don't think it's MS-related, but it could be. I have no idea, but despite today being pretty low-key (we went to the movies) my pain levels are rising. I've actually already done my nighttime "doping" (my medley of pain pills plus a sleeping pill, so this may get really incoherent soon), but am still in agony. I think it's time to call a doctor. Ugh! I really hate calling my PCP and I didn't want to spend this week doing anything medical, but I can't function with one side of my body sore and swollen.

Of course, the pain and the stress over the pain is starting to set off brain stuff. Useless.

And to top it all off, I got the summary of charges from the hospital today. I racked up nearly $68,000 in charges. I don't know what our portion of that will be (they haven't received information back from the insurance yet and we have decent coverage), but the thought of that has me completely freaked out. I'm trying to remain calm and ignore my inner voice which keeps saying, "no more visits to doctors, hospitals, medicine!" I hate that voice, it always pops up when the bills come in. This time I know it's ridiculous and I can't listen to it (even though it will make me more hesitant about future care). But it's there, it's stressing me out, and intensifying my guilt.

Best Day Ever!

Not only did I just get home from my wedding, but I just realized...

MY VISION IS BACK!!! Both eyes. I can see everything. No issues with color. No issues with blindspots.

Today was, by far, the best day of my life to date.

I'm so excited

A few weeks ago, I was invited to write about my experiences for The Rotund. I said yes, but had writer's block. It always happens to me, when I want to write something my brains becomes crickets. Then on Saturday, I woke up with inspiration and 20 minutes later had some I could be proud to have others read. I sent it over and it was posted today! So, in the midst of all my frenzied cleaning and organizing (my family arrives in 26 hours), I present MS and Fat. Please read and comment, I love hearing your thoughts!

Lazy Sundays

Today has been such a lovely lazy day. We are less than a week before the wedding and I've been trying to slow down a bit so that I'm as healthy as possible for our big day. I'm doing pretty well too. I have just a tab bit of numbness in my toes, but I'm getting around the apartment completely unassisted. I have much less daytime sleepiness and fatigue, which is fantastic since I was up until 2 am last night, despite taking a sleeping pill. Oh, and I made dinner tonight without having to sit down one time! I'm doing really well, except for this dumb eye which still hasn't done back to normal. I'm trying to remain patient, but I'm ready to see again.

In happier news, I'm extremely excited to see my family at the end of the week. They arrive on Thursday morning and will be visiting until Tuesday. Gah! I'm so excited that I'm shaking. This is going to be so great. Please send lots of good energy our way for our safety and joy.

One last thing, I may not be around for the next two weeks as we're planning and then celebrating. One of us will update if something spectacular occurs, but I've decided that my MS is going to cooperate and be quiet until at least July 27. Thank you.

Friday

Yesterday was incredibly busy and exhausting. I had an appointment to get my hair cut for the wedding at 11:30. Not usually a big deal, except that I'm broke and in order to afford the cut, my stylist requests that I come in with freshly washed, relaxed, and flat ironed hair. This process has always been exhausting because I literally spend three hours standing with my arms raised. Normally, I would get up early and do the whole process the same day as the cut, but I don't have the stamina anymore. So, I relaxed and round brush blow dried on Thursday evening and when I woke up on Friday, I flat ironed it all.

The next step was actually getting to the appointment. I was determined to have a little normalcy and insisted on taking the bus there (versus a cab). The nearest stop is about 5 blocks away, but with my stamina and speed on the crutches, I allowed myself 30 minutes to get to the stop. It took me 20 and I was spent. But the good thing is that I only had to take one bus and I exited a half block from the shop.

The cut went smoothly. No, it was fantastic. At the beginning of the appointment I showed her how I planned to wear my hair for the wedding so she would understand the cut. Usually she just cuts it and sends me on my way, but this time she also curled it the way I want for the wedding, FOR FREE. She said that she wanted to see how it would look and it was so pretty. I actually teared up. She could tell her pleased I was and decided that she wanted to be the one to curl my hair for the wedding, even though Sunday is her day off! And on top of that, she's only gonna charge me half to do it! {insert happy dance} If you're local and looking for a place to get your hair cut, please check out Johnetta at First Encounters on MLK. She's also been doing Nilaja's hair for years. She's a fantastic stylist and even better person. Tell her I sent you. (I hesitate to post pictures because it's my wedding hair and I want it to be a surprise.)

When I was done, Nilaja picked me up and we picked up the tub transfer bench that was donated to me by a wonderful woman named Mira. She's had it in her backyard for a while, so it needs to be washed, but it's the one I wanted and seems to be in good condition. I'm so excited to have it.

After that we came home, at lunch, then went out on the patio to sunbathe. Nilaja and I have been trying to even out our tans before the wedding by getting a little sun each day. I don't know if it's working, but we're gonna keep trying for the next week. While we were outside, I finally got all the arrangements for the wheelchair worked out. I contacted a company called Grandmar Inc and although they typically rent their chairs for a month, he's agreed to do a weekly rental for me. So, just in case other things come up, I'll have a wheelchair for my family's entire visit. And the best part is they deliver and pick up for a pretty low fee. Sweet!

The rest of the evening was spent with me intermittently staring into space and helping Nilaja with her college statistics homework. I have to say, that it's incredibly difficult stuff. I used to think I was good at math, but when asked if I understood some of the concepts, all I could her was a blank stare. But I have to give it to her, she didn't give up on it and I think she finished it all.

Before I close this post and go have some Cheerios, I have to tell you a secret: I want to sing professionally. OK OK, I know that's not a secret to some of you, but I'm serious about this. A few days ago I caught a Jill Scott concert on Vh1 Soul and it has me inspired. It happens to be on right now and it's putting me in such a happy mood. I love music so much and believe that I might have a little talent. But how do I get started?

You've got to be kidding me

Everyone please turn your attention to the date and time of this post. That's right folks, I'm writing this at 5-something am on a Saturday morning. Why? Because my sleeping pill quit on me and now I'm awake. It's especially frustrating after the exhausting day I had yesterday. I actually expected not to need the sleeping pill, but I did. Oh, and did I mention that I took the pill after 11 pm? I should still be sleeping!

I'm really excited!

Today is a really exciting day for me. First, I'm going to get my hair cut in preparation for the wedding. I want to get it cut into a long layered bob with bangs. Second, someone has a transfer bench for me and it's the exact kind that I wanted. She says it's a little dirty, but I don't mind scrubbing it down. Phew, this is such a relief and I can't wait to get in the shower and shave my legs! I'm so happy, that I'm doing a little dance. It's a good day.

Another really good development is about wheelchairs. My family is coming to for the wedding and next Friday we're planning a trip to the Oakland Zoo. I've been very excited for this because we LOVE zoos. During my childhood we would go to the zoo, usually Brookfield near Chicago, twice a year. I haven't been since leaving for college. The only problem is that zoos require walking. This is a major issue because my walking stamina, even with the crutches, is at most 3 blocks. I figured I could use a zoo wheelchair for the day. Unfortunately, I called the Oakland Zoo to inquire about wheelchair rentals and they don't have them. Ugh! However, I emailed one of the many list-servs that I subscribe to and I have leads on three different local places where I may be able to rent a chair for the day. Woot!

The only downside is that I'm sleepy and tired. I tried the new sleeping pill last night. It worked very well, but only for 8 hours. 8 hours after I took the pill, I woke up. I feel the way I do on the insomnia days, exhausted but wide awake. Oy! I just want a good night of restful sleep. The interesting part of this is that last night I had dreams. Very vivid, fascinating dreams and I usually don't dream when I take sleeping pills. So I guess the experience wasn't all that bad.

Other MS blogs

I know that I'm just one of the many many MS-blogs out there. And some of those bloggers read here. I appreciate that support and would love to also show you support. I'm new at this and could also learn so much from you veterans. Not only would I like to add you to my Google Reader, but I would love to add links to your websites on my blog. If you're interested in also sharing your experiences with my readers, please comment here or email me a link to your website. My email address is myjourneywithms@gmail.com. Thanks.

I feel like writing

Today has been a busy day for me on the internet. I spent a good deal of time working on the layout for the blog and added my new Twitter account as well as links to our Facebook profiles. Please feel free to friend us on either or both.

I've also been looking for the tub transfer bench because I'm really looking forward to taking a shower and not stressing about falling. THESE THINGS ARE EXPENSIVE. Geez! They go as high as $250 on some sites, depending on style, material, and weight capacity. I would prefer a bench that has two legs outside the tub and two legs in, which will allow me to safely sit down then move my legs in one at a time. Some benches are designed where you step into the tub then sit, but the times when I usually slip is getting in and out. Anyway, I posted a few places looking for a second hand bench. Since the seats are plastic, I can always wash down a used bench and feel perfectly safe. Here's what I posted:

Hi, I'm newly disabled and in need of a tub transfer bench. I prefer the kind with two legs outside the tub but if you have one with all four legs in the tub, I may be interested. New models can cost as much as $250, which is not covered by insurance and not in the budget as I'm not working (due to my disability). If you have any information or a bench that you'd like to get off your hands, please respond off-list. I'm in Oakland near the lake. Also, if you are willing to deliver or ship, you get bonus points and I will reimburse any expenses. Thanks.

I did get one response from a woman who has one that's been in her backyard for a bit that she'll let me have. I may take her up on the offer if it has metal legs, but I'm still holding out for one that has been treated a little more gently. Though, as my mother always says, beggers can't be choosey.

I also splurged and bought this wheeled laundry basket because it was 25% off and I really do need some help on laundry days. Carrying that basket back and forth down the hall is draining. I'll let you all know how it feels once it arrives and I have another big laundry day.

Exercising again

For the first time since the flare-up, I made it down to the Fitness Center to workout. We wake up at 4:30 to get ready and workout from 5-5:30. It's a really invigorating way to start the day. Today I decided to take it easy and did the stationary bike instead of the treadmill. Well, the decision was made for me since I'm still having a hard time walking unaided and holding onto the treadmill rails isn't enough. Plus, the physical and occupational therapists at the hospital believe I was over-doing things on the treadmill and recommended I take a break and try the bike for a while. I tried and even though I know it's a gentler workout, I could not do a full 30 minutes. Actually, I could hardly make it through 12 minutes before I had to stop and rest. I spent the remaining time hopping from machine to machine reminding myself that I was completely spent and done working out for the day.

I did manage to do some weights, but my shoulder is really too screwed up for me to lift any real weight. I know it's important to try to do some kind of workout on my arms, so I also do light weights in the apartment as well as an exercise with my cane that the home physical therapist taught during his visit. Did I ever write about his guy? I don't think so. Well, my new home physical therapist is Gordon from Nightingale Nursing. He is a nice guy with a thick and hard to discern accent and repetitive speech pattern. Which I liked because at times I had a hard time picking up what he was saying, though maybe he could see that in my over emotive face and knew I wasn't understanding.

During our first visit (Friday afternoon) we went over my exhaustive list of prescriptions and supplements and determined some of the equipment that I'll need to make my life a little easier. He pretty much echoed what the hospital PT and OT suggested, I need a tub transfer bench, a grabber so that I'm not doing to much reaching and bending (which can cause falls), a cart to carry laundry, and a bedside commode. While I agree with most of the suggestions, I refuse to buy a commode and would rather wear a diaper and take my chances getting to the bathroom, at least for now. The hospital OT gave me a catalog I can order from and Gordon is also checking on wholesale prices for me. I haven't acquired anything yet, but I know I at least want to get the transfer bench because taking a shower without slipping or worrying about slipping would be really nice.

How I'm doing

I haven't had a clear moment to update yet, but I wanted to let you all know that I'm healing pretty well. Yesterday we visited the new neuro's office and met with her MS-certified nurse practitioner, Lynn. It was a really great visit and the differences between their office and Dr. F's office were pretty big.

First, this is a big office. Not only are their several doctors, nurses, and office staff, but the physical space is huge. I was in awe of the high ceilings and all the space to sit and wait. The office is also completely wired (technologically), so Lynn could press a few keys and see everything that happened at the hospital. I was initially turned off by this because I'm old school and will never give up my pen and paper. But, it was also really great that I could go in to see her and she already knew what I'd been through and all the doctors and therapists' opinions. This made for a comprehensive visit and exam, and she didn't have to "take my word for it" when it came to my 6 days in the hospital (expecially good since I was pretty doped the whole time).

I really liked Lynn and her way of talking me through the exam. I finally understand all the tests that the neuro's do, as well as my results. I had no idea that my vibratory response was so greatly decreased, but now I know. All in all, she believes that it will take at least 4 weeks after the steroids to heal, if I'm going to heal. We are optimistic and I've already seen some improvement in my eyes and legs.

Speaking of my eyes and legs, I'm doing pretty well. I still need the Lofstrand crutches to get around, but the strength in my legs is coming back and the numbness is only in my feet. My right eye is improving. I still can't see color and have a blind spot, but the dark cloud is less dark (I would say lighter, but that doesn't feel right). My biggest issue is fatigue. I am so tired. I've been fatigues before, but I feel like I hit the wall a lot sooner than I did before getting sick. I still can't sleep though, but Lynn did give me a prescription for something stronger than the Ativan. She also gave me some samples for a new pain med to add to the routine and I'm hoping it starts to take the edge off some of the pain I feel.

All in all, I'm doing pretty well. The wedding is less than 12 days away and I'm incredibly excited for it. No anxiety or stress at all. I'm just really happy and looking forward to the event.

Reader Question

This morning I received an email from a reader. I was really torn with how to respond, but with Nilaja's help, I think I'm ready to respond. Here's what they wrote (I hope this is OK, name withheld):

Hi Chris,

Thank you for sharing your experiences with us. I've been reading for a while. I know you are not working and short on money and with the recent hospital stay I'm sure your worried about getting those bills in the mail. I was wondering if you would consider accepting donations from readers. You could put a donation box on the website and if people want to help with bills or send you gifts they can do it in a safe way. What do you think?

Well, my first reaction was thank you, but I can't. I've always had a hard time accepting help in any form and even though my income is small and fixed, I'll figure out a way to manage. But the truth is, I am hardly managing right now. In my entire adult life, I have never had this much worry over bills and with my disease still being so out of control, I'm not sure when things will change. My "I hope to be working by" date continues to be pushed back (it's not August anymore). I'm currently praying that the hospital bills come after the wedding so that the stress won't disrupt my day. (I am also trying to figure out how to pay for all the new prescriptions, equipment, and supplies that the doctors/specialists think I need.)

I am truly and completely humbled and grateful that anyone, even a stranger who knows me only through the words that I post here, would want to offer help. I wish I had more to offer in return, more to give you as a thank you. Just know that I feel blessed at even the thought and any donations will help relieve the burden and stress that paying for my care has caused. Thank you thank you thank you.

Home

I was discharged home today. The insurance would not approve the inpatient rehabilitation, but I am getting set up with in home care and possible out patient rehab. So, I'm home and exhausted. I'll write more tomorrow when I'm more awake.

Still in the hospital

But hopefully not for long. I tried to get discharged last night after my last infusion but Dr. C wouldn't release me. I told her that I was walking more normally and my pain levels were down, but she didn't care. I was really bummed, but Dr. knows best. She wanted me to keep my mind open about rehab (there wasn't a bed for me yesterday and then they started having trouble with my insurance, so I was ready to give up on that possibility) and also remember that I was really sick when I came in here and just because I'm feeling better doesn't mean I'm well. On top of being just ready to go home, I was worried that I wouldn't get to sleep and another night of staring at the walls and curtains would drive me wild, but I slept soundly. I needed that. It's also helped me reconsider rehab and if they offer me a bed there I'm going to take it.

This was a really difficult decision for me. I really miss being at home, and having my things, and my routine, and sleeping next to my wife. I've never liked change and after 6 days of being in a foreign environment, I'm getting mighty antsy. But I'm gonna suck it up and do what's best for my body and my family. I can't shrug my shoulders this time, I need to get as close to 100% because it's not just me. Oy, I hate being an adult.

As far as my health is concerned, I'm doing a lot better. My leg pain is low, my stomach pain is manageable, and my strength is getting better. I can walk short distances unassisted and even went all the way down the hall yesterday without getting tired. My vision hasn't gotten back to 100%, but I'm pretty sure the haze is getting lighter. Phew. Things are getting better, I like that.

Yesterday, Last Night, This Morning

I'm so tired people. So very very tired. Yesterday at midnight, I was woken up so they could attach fluids to my IV. The plan was to have me met the gastroenterologist early and hopefully get set up to do an upper-endoscopy, so I had to fast starting at midnight. This isn't a problem since I am usually asleep by 10 pm. Setting up the fluids didn't take long and I went right back to sleep. Then four hours later, the nurses came in to take blood and get our vitals. This visit was definitely more intrusive than most visits, but I'm pretty sure I got back to sleep eventually. But not for long.

My next visit was from Angela the physical therapist at 8 am. I really like her and we work well together, but 8 am sucked. We worked together for 30 minutes and then I got up to do my sponge bath and put on fresh gowns. As soon as I was done, it was time to meet with the occupational therapist. This was the first time I'd met with her, so I had to go ove my history again and once again get chastised for the way I challenge myself on the treadmill. UGH, I WILL DO LESS. This woman was also vey concerned with me buying stuff like a commode, new chairs, a shower bench, a grabber, and a few other things. We'll see what happens there because I'm am so broke and trying not to think of the charges I'm racking up here. After she left, the chaos began.

I quickly met with a gastro who felt around my gut for a bit before agreeing that I needed the endoscopy. I thought I had a little time before that was going to happen, but the next thing I knew, I was being prepped for surgery and getting ushered into the basement. I was so tired and drifting off the whole time. At some point, I'd thought I'd quickly nodded off while they were setting me up, but I woke up and they were down. Apparently I didn't go to sleep when I thought I'd had because I was still talking to them and was alert when I swallowed the camera. I was also alert enough to warm him that I'm very sensitive to medication, so when he went to put me to sleep, he didn't need to put in a lot. This happened just before they sprayed my throat, I swallowed the camera, and then he put me to sleep.

As soon as they took me to recovery, I was told that my new neuro Dr. Cooper had ordered an Evoked Potential test for my eyes and they were taking me there once my vitals stabilized. That pissed me off. I didn't know what the test was, I was exhausted, and I like to take an active role in my healthcare. I hate that Dr. C is much more take charge and doesn't think to discuss things with me or even tell me about them. Yes, you are a doctor, but this is my body and I want to know what you're doing to it. Luckily, the test is completely benign and is commonly down when diagnosing MS. It took about an hour total and then I was back to bed.

And suprise, suprise, my previous roommate was gone. That made me a little sad, but my nurse found out that she was safely in a different area of the hospital so I could relax. I pulled back the divider curtain, ordered some solid food, and settled in to having a great evening. Not so fast, my paradise was quickly lost when they wheeled in a rather loud woman with rectal bleeding. This I know becuase it was being shouted on the other side of the curtain. I should have known that it would only get louder and more obnoxious as time went on. I did all my treatments (including the second dose of steroids) and then shut off the tv to settle in. I took my sleeping aid and a full dose of pain medicine and went out immediately. Then, the chaos in the next bed woke me up. There was shouting of bitches and why don't you love me? Then "is that blood coming from your rectum?!" "I need to check my blood sugar!" Constant pressing of the call button and then deciding not to answer so the nurse would scream hello into the intercomm 2-3 times before coming in the room. There were request for benadryl becaus she's allergic to the pain medicne, but didn't want to try a different one. Then, they started doing the transfusion which meant non-stop action until 5:30 am. I think I got 2 hours of sleep last night. My head is pounding.

I think I get discharged to the rehab facility today, but I'm not sure. If not today than tomorrow. I'm actually hoping for tomorrow so I can try to get some sleep in today after the therapy appointments, doctors, and my last steroid infusion. Fingers crossed.