Hola

Finally got my dictation program working again! I had to buy a new microphone and reinstall it. I can’t believe it’s already February!

Updates:

  • I’m still really struggling with the reactive hypoglycemia. I think it’s having the most effect on my life right now than anything else. I know it is. I’m getting really depressed about it but trying to keep fighting on. I have the opportunity to see a more specialized doctor for it and a dietitian in a couple of weeks so I’m going to make it until then. The caveat with that is that I have to give up my current psychiatrist that I really like to be able to switch over to the other department. L But I have to do it and hopefully I will be able to switch back in a couple of months. I have to get all of that set up today.

To be honest, not much else is going on. My health problems are taking over my entire life. This is one of the very hardest times I’ve ever been through.

I’m reading “Shogun” by James Clavell. It’s really good.

shogun

That is all I feel like talking about for now but I will be back soon.

Invisible Illness Awareness Week September 10-16, 2012

I have an invisible illness – mononeuritis multiplex and a host of other symptoms (all with no known cause, which, in my opinion, makes it even MORE invisible). If you have neuropathy of any kind, let me know. I would love to talk to you.

I ask people just to keep in their minds when they are quick to judge that you can’t tell everything about someone’s health just by looking at them. I have had people make rude comments about me taking the elevator (“kids these days are so lazy” – I am also not a kid, I am 27 and was 25 at the time they said this), about sitting on the ground in a long line (one man tried to run me over with his cart at the supermarket), and many other things. I have had people just not understand. I get annoyed by people saying all the time, “How did you hurt your ankle?” –  to which I reply that I always walk like this, thanks so much. I hate the bus driver on the bus glaring at me when I flash my disabled bus pass, like I am conning the system or something. Yes, I can walk on and off the bus just fine. However, I cannot drive, and if I had to walk more than two blocks down the street, you would see me limping and grimacing in pain. I used to be guilty of making these judgments too. Once in a while I still do, even about things like elevators. Then I catch myself and think that I don’t know why someone is taking the elevator. I just ask everyone to be aware, and to know that most people with chronic illness are NOT lazy and are actually very, very brave. This goes for doctors too, have compassion! I will pray for all who have chronic illness this week, that they have peace in their hearts and know they are brave.

Indecisive – Push myself?

Hi! I have been having so much trouble with the nerves in my arms that it’s really hard to use the computer. I just wanted to give an update. I saw my neurologist on Tuesday last week (one that I finally liked!) and I have been officially diagnosed with mononeuritis multiplex. I already knew that this is what my symptoms are called, I have mentioned it on this blog before, but I’m glad it’s been officially mentioned to me by a doctor. The last neurologist I saw (the total asshole) who didn’t read any of my chart before he came in… I asked him point blank, “Would you call this mononeuritis multiplex?”. He laughed in my face and said there was nothing wrong with my nerves necessarily, I should see an orthopedist to see if it’s something wrong with the tendon in my ankle (if he would have looked at my chart he would’ve noticed that that was ruled out three years ago). So it was super gratifying to me to have someone look at all my symptoms and history and thoroughly asked me questions and come to the conclusion I already knew was accurate just based on my own research! I have been so determined lately not to give up my dreams of entering the medical field myself. It kind of all depends on if when I see him next he determines that ulnar nerve surgery could be successful for me (and the surgery actually works – with mononeuritis multiplex I have some concerns that this wouldn’t be just a cut and dry nerve release surgery). Anyway, this new neurologist conceded something was wrong, and while I don’t feel like he totally had time to understand the full impact this has had on my life, I feel like he understood part of that at least and feel relieved to actually have an official name for my symptoms (even if it’s idiopathic mononeuritis multiplex -meaning no known cause – which about 33% of these cases are). I also feel really relieved that he was compassionate and took me seriously. He wanted to do more blood tests that he really felt were lacking and another EMG test. Most of all, he made me feel like we are partners that will keep working on figuring this out. I wish more doctors would understand that is what patients need the most, to feel like they have someone on their team.

If you’re interested, please read up on mononeuritis multiplex. It can be a lot more disabling than most people give it credit for. It’s difficult because it’s not the name of a definitive disease, but rather the name of a collection of symptoms. In my opinion however, it describes a condition and it is what I will now tell people that I have.

I stayed really strong this weekend. I’ve been meaning so many more fruits and vegetables, especially really enjoying cantaloupe! I also added a B- vitamin supplement every day, even though it kind of upsets my stomach, per the doctor’s recommendation. My B vitamin levels never test low on laboratory tests, but I really think that those healthy ranges are just guidelines. There are many people that need more just based on their own body composition, activity level, etc. – so you could have a subclinical problem where no one will say you are deficient but you still might need more. After writing this article on the differences between animal and plant sources of iron (and their different absorption rate), I realized that it’s actually kind of stupid to take a multivitamin. A lot of my article is about how calcium and other minerals found in foods decrease the absorption of plant-based iron. There are many interactions among vitamins and minerals. To me, it doesn’t really make sense to take in one pill a bunch of iron and simultaneously a bunch of calcium, etc. I would rather just work on my diet and take a single B- vitamin supplement with the idea you aren’t taking a bunch of things at the same time that will interact with each other, you’re just focusing on one.

The heat is supposed to abate starting tomorrow but we now have that window air-conditioning unit upstairs and since we live in a small townhouse, it is cooling off the entire place. The master bedroom is still a little hot, but at least one bedroom is very cool and the cool air flows downstairs and keeps the man for cool. I’m so thankful!

I’m kind of in a Catch-22 because I think that to afford the surgery and other treatments I would have to take one of these babysitting jobs I am getting hits on, but I don’t want taking one of those jobs to be too much for me and make all my pain and numbness worse! I know I need to do it for my mind but I also want to do something I feel comfortable with. That main offer I have is to babysit a toddler and two 4 month old babies. That seems crazy! I am also still nervous about meeting with the mom, just because I get social anxiety really bad sometimes. I have watched plenty of children but it’s been a while since I watched babies. I just know that if I don’t push myself to call her, I will just keep stewing here and driving myself crazy with this feeling of restlessness. I know that if I don’t take steps to earn some income I will be able to pursue and have my dreams. I love that feeling when you accomplish something and I just want that. I’m going to make a decision today to either call the twin lady and ask her if she will grant me another interview (since I had to cancel last week), or just tell her I’m unable to do it and move on trying to set up an interview with this other lady. B said to just try it. I guess I owe it to myself?! I know the answer to this. Why am I so scared? Why do I just give up?

Olympic Fever

Getting ready to watch the women’s soccer semi-final match between the USA and Canada. I loved watching the Olympic swimming and now I’m sad it’s over but I’m moving on to women’s soccer! Go USA!

I had a great swim this morning. I’ve been especially enjoying swimming during the Olympics!

I literally watch at least six hours of Olympics a day! Olympic fever! The Olympics just make me happy. They just represent all that is right and good in the world.

Update on my eyes: I went to my second ophthalmology appointment last Thursday. The doctor determined that there isn’t any pathology in my actual eyes, but there something wrong with my optic nerve/brain that is causing the problems with my eyesight (loss of peripheral vision and some black and white spots in my central vision). Again, he mentioned that this is possibly indicative of MS, especially in lieu of all of my other neurological symptoms. He wrote a note to the neurologist about it, and either way neurologist will have to look at central nervous system and optic nerve involvement. This is the fifth or sixth time MS has been mentioned to me. I really hope to get relief through a diagnosis soon no matter what it is. I had gotten used somewhat to my other symptoms but this thing with my eyes has scared me.

Today have to work on three things:

  • Make B a doctor appointment
  • make a copy of our marriage license and send it in to B’s work to verify my dependence status
  • change my name! I might use this website missnowmrs.com even though it costs $30

Me?! Complaining about the Heat?!

To-do Monday and Tuesday:

  • make appointments for ophthalmologist, arm surgery, and psychiatrist
  • call UHC credit to give them information
  • call federal loans to make sure they got deferment and to change address
  • decide if you’re going to sign up for pharmacy tech test (and do it) or if you’re going to apply to TESOL (in do it)

I am not typically a person who complains about the heat. I love warm weather and have been known to sit outside and read in the shade of when it’s in the upper 90s. But these last couple days I have finally broken down to whine about the heat! It’s been in the triple digits here where we live in Southern California, yesterday the high was 103 degrees and today it’s 100. We don’t have any air-conditioning (it’s broken). My landlord won’t come over here till Friday. I don’t even really like to use air-conditioning. Last summer I used it a total of two days even though it was in the upper 90s multiple times. I hate spending money on and I hate having to keep the windows closed. But this week is really getting to me. I think it’s because our townhouse doesn’t really get any cross breeze (because it’s not an end unit so it’s kind of boxed in), so it’s stifling in here at night, especially upstairs were the bedrooms are. Last night I just felt really ill, I was getting heat cramps in my legs. My two main worries are not being able to sleep at night, and my dog – he’s a pug so he’s not supposed to be in hot temperatures like this because they’re prone to heat stroke due to their flat faces. I can’t sleep because I’m hot and I can’t sleep because I’m worried about him as he pants in front of the fan. I was getting into a good routine but this has really thrown me off. It’s so hot that I feel sick and I have no appetite and then I just get really we can start worrying about myself. Last night we bought a small evaporative cooler from Amazon.com and it’s supposed to arrive tomorrow, so hopefully I’ll have just one more night of no sleep. If it works well, I would really just used that for the rest of the summer instead of turning on the air conditioning, just so the bedroom stays cool so I can have a place to escape and sleep comfortably! I can’t wait to we own our own home. Our landlord is okay, but he’s just really hard to communicate with because he doesn’t speak English well at all! He also really annoyed me the other day because he basically won’t speak to me about anything maintenance related. Very chauvinistic if you ask me. My husband and I both knew exactly the same amount about the air conditioner. Also I grew up with a carpenter for a dad (now he owns a hardware store) so I’m pretty handy!

I am trying to accept that my life will probably always be a struggle and just take it one day at a time. I’m trying not to get so scared about my health.

I am taking my husband’s last name, but I still having gotten around to changing everything. I feel sad about giving up my maiden name, but I’m slowly getting used to it. I would never not take my husband’s last name, it’s really special to me and that’s what makes me really feel like we’re married. I’m thinking about changing my middle name to my maiden name so that I can keep both names without hyphenating. I really want to create two middle names so I don’t have to lose my current middle name, but I’ve heard that gets really complicated and doesn’t really work out that well.

I’m kind of slow doing all this because I still mainly use my parents address as my permanent address. We move so much that I get sick of changing everything all the time. The next time B gets promoted, there is a high possibility that we will have to move again, probably to another state, so it’s like were both just kind of waiting to see about that before we permanently change our addresses. At the same time, now that we are married it’s really time that we do it! The other thing is that I don’t want to get a California state drivers license. I renewed my Colorado state drivers license in December. California makes you take the whole driving test over again (the written part)! That’s ridiculous. Plus it costs a lot of money and then if we move again to a different state I’ll just have to change again. Maybe I will wait on everything for a little while. Technically I’m supposed to have a California state drivers was and by now, but with my nerve disorder I really don’t drive very much so it’s not something I want to spend the money on.

Today I’m honestly planning to just take the day off from doing anything. I’m really exhausted from not sleeping the last two nights due to the heat. Yesterday my brain just got the best of me and I’m disappointed in myself and scare that will happen again. I just want to escape into my book. Maybe I’ll do some writing today. I get overwhelmed with my story, with what the point of it should be. Actually it’s the other way around. I know the whole big picture but I don’t know how to get there in a way that not too much or too little detail.

Unfortunately I haven’t heard back from the part-time babysitting job, which is weird since the lady contacted me first. I have promised myself I will do the job of the get it, it would be perfect for me right now. I’m just praying for something like that to work out, and soon!

B was asking me the other day what my fears are and I said one of them is God. Yes, I’m afraid of God. I believe in God, but I almost wish that I didn’t. My belief has mostly given me a lifetime of fear and guilt, not comfort like I wish it did. Yet I can’t help but believe in God. I just feel in my core that He exists. This is something I think about all the time, it really gets to me. I want to have a purpose on this earth, but I feel trapped in a terrible cycle where I don’t take care of myself because I’m so restless and frustrated about my disability, but not taking care of myself makes my disability worse so that I can’t do anything. I feel helpless. Sorry for any typos that don’t make sense. I am dictating.

I’m working on all of our wedding thank you notes and am almost done. My arm starts hurting for running, hopefully they’ll be alleviated by the surgery! I am so appreciative of everyone who came all the way to Colorado for our wedding. We had people spend a lot of money and time to come from Washington, Northern California, Southern California, Idaho, Montana, Texas, Tennessee, Washington DC, Arkansas, New Jersey, and New York, plus all of my Colorado contingent! So blessed to have such great family and friends.

Be patient and tough

I am making lemon-spiced chicken thighs from a recipe I found in The Newlyweds’ Cookbook. I just took them out of the oven and they smell delicious. Chicken thighs are one of my favorite things to eat. One thing I only recently discovered.

On Saturday night we drove down to San Diego to see my parents and my two sisters who are there on vacation this week. We only stayed one night even though they are there all week and it makes me sad to be only two hours away from them but not in their presence right now. I have felt very depressed since we came home yesterday. It just really miss them after all the fun wedding festivities, I realized how lonely I am here when B is at work especially. I just feel so sad.

Now that the wedding is over, I am thinking even more obsessively about what my next step is. Unfortunately I still feel paralyzed by anxiety. I get so many ideas and then run into roadblocks over and over and I just felt so lost.

I have so many ideas bouncing around in my head. But I can’t concentrate on anything still. One of the things that is the hardest for me is how I feel a complete lack of support from Drs. still. I just feel so alone. One good thing is that the primary care doctor I’ve been assigned at Kaiser (I could spout off about how much I hate Kaiser Permanente forever but that’s another story for another day) actually signed and got back to me the paperwork so that I can give the disabled bus pass and thus pay reduced fare. So I’m going to mail that in this week. It means that a bus trip costing $3-$4 will now cost me a dollar $1.20-$1.60. This will really help us out over the course of a month since I take the bus wherever I need to go most week days. The appointment I need to make, which I dread making because I have parent attacks just walking tour Kaiser building – not joking panic attacks as people usually use that term but real ones, are for the ophthalmologist (because it is still suspected that I may have MS), to see another neurologist (the worst!), and to reschedule my appointment for my arm surgery. I also need to figure out a bunch of stuff about my student loans are all never be able to go back to school. I don’t know why I get so behind on those things. I just push them out of my head because I can’t face them.

I am so happy to be married. I could live my wedding day over and over again. Is anyone interested in seeing more pictures/hearing more of the story?

Bridesmaids Dresses and More

Happy Sunday!

Sundays are the first day of the “work week” for me because B works Sunday to Wednesday. I have decided that Sundays are my “day off” where I’m not allowed to do anything all day and I have to put aside all worries for the day and just relax and watch my TV shows without guilt and read a lot. It’s really helpful to just totally set aside that one day that you don’t have to do anything. I end up actually doing some things most of the time just because there’s no pressure! Like today I’m doing wedding stuff while watching a Downton Abbey marathon and I’ll probably do some cleaning later (JUST BECAUSE I DON’T HAVE TO).

I you like I have been eating SO much lately and not doing good on my goal of eating more protein. I feel pretty disgusting but I also just kind of feel frozen right now and directionless. L

My sister picked out the bridesmaids dresses. This is the one she picked from David’s Bridal if you want to see it. Click on the color swatch on the side labeled “Marine” to see the color I picked. I really wanted them to wear long dresses but I also just wanted my sister to pick what she felt best in. T was so surprised that she picked a long dress anyway! So that worked out well. She is only 20 years old so I figured she wouldn’t go with the long style. 😉

Today I e-mailed my cousin, who lives in Montana, to see if she is okay with ordering that same dress online so they match. This is the girl I love so much but who suggested that we get them at Target! I offered to pay for 50% of her dress because I think it’s a money issue for her. I personally think the concept that the bridesmaids have to pay for their own dresses is ridiculous and a lot to ask! My mom agrees and she’s paying for my sister’s dress .They’re supposed to pay for their own hair, makeup, manicures too!

There is the continued awkwardness about my second sister. We are estranged, I would sort of even use that word now. I told my mom I was going to e-mail her and ask her to be a bridesmaid even though she might say no. But I have avoided doing that because I’m torn about it. She’s the one who doesn’t want to talk to me, but I don’t know what I want to do. I really want her to be a bridesmaid because I don’t want to look back later at the pictures and not have my own sister in them. I also don’t want to deal with how awkward that would be when everyone is surprised that she’s not up there. But on the other hand, I feel like having her around me all the time on that day, getting ready together, etc., will really bring me down and make me more nervous and make me unhappy on the day that is supposed to be really special. It’s definitely a dilemma.

I’m not sure what I even want to pursue career-wise right now. I have become so very discouraged by that horrible neurologist not being supportive of me. It sucks all of my confidence away that anyone will even authorize me to have disability accommodations at a job. And that is so depressing to me. And don’t even feel like trying. Because I couldn’t work without that. I still want to get the pharmacy technician certification as an option so I can apply for jobs because that’s something that really interests me. And there’s some other venues that I could go, writing and even babysitting, or trying to do some work at home type of thing. I’m just afraid now and that really messed with my confidence. I don’t know how to start anything. But I have to do something so need to get on track and work on that this week. I have actually applied for six or seven jobs in the last couple days so that’s good.

Thought y’all might like this picture of my pug and his new friend Frankie that he met at the dog park and has played with several times. They are hilarious together. We went to the dog park every day this weekend. BEST PLACE ON EARTH.

I feel SO much better when I swim. I can’t get over the fact that I can’t drive myself there and then I have to wait till one o’clock to go with B and by that time I don’t have the same energy left because I don’t like to eat right before I swim. My ideal time to go is to eat breakfast and then go a little while later. And this way just seems to make my eating schedule weird because I eat lunch so late. I just have to push through that new block that out of my mind and accept it AND MOVE ON so I actually go and stay on track with my mental health!

We’re moving into a townhouse in two weeks and I’m kind of tortured by the thought that we could have lived in this townhouse literally two blocks from the pool and I could’ve gone whenever I wanted. It was between that and the one we chose, which I chose because it’s SIGNIFICANTLY nicer and in a much better neighborhood. Since B works nights I just wanted to feel safe at night. But now of course I’m regretting not choice. Actually when I was deciding about it I knew that if I lived by myself and it wasn’t a question of two people’s lives involves, if it was just me, I know the healthier option for me would to have chosen the house that was by the pool, even to live in a more run down place. But I didn’t do that and I’m going have to live with it. I’m so indecisive. If I had chosen the other one I would’ve worried about bugs and mold and probably would have regretted it too. Hopefully I can swim in the complex, even though it’s a small pool, sometimes in the summer and I can stay strong and remember that this is a six month lease and if we have to move again there is NO WAY IN HELL I am not living within a mile of a pool! The pros to this place is that it is definitely nice and feels like a real home for us that I will be proud to have guests over. And I can walk my dog in the neighborhood at night.

Have you ever had to make a hard choice about where to move?

Any other Downton Abbey fans?