Even If I'm Just Writing For Myself....



(This is how I imagine my brain and body communication to look like…)

Good morning! I didn’t write ANYTHING yesterday. I just couldn’t muster the energy. It was declared, within our household, to be our “Day of Nothing.” That’s what we call days that are spent in pajamas watching television or movies, doing nothing productive. Those are great days! J
Today I woke up with my continued “issues” and my right hand is starting to become weak again. There’s an uncomfortable sensation that runs down my arm, and during this time, I feel myself concentrating harder than usual to make my hand do the things I needs to do. Typing, for instance. It’s really quite amazing how difficult to understand and complex our brains and nervous systems are!
Since I am still waiting on Disability to contact me (or, deny me since it‘s my first attempt), I need to find a way to make money. Doctor’s appointments, medication, food, you know, the usual, need to have some financial backing. By that, I mean, I need to provide them with cash that I, at this time, do not have. I plan on applying for some hostess positions today. I think I can do that for a short shift…. I can try at least…
My guy is pushing me to find a job, and although I try to explain this to him, it’s hard for him to completely understand. At least, that’s the impression I get. I think he thinks it will help my situation to work or find something to do… that’s profitable preferably. Maybe he’s right. So, I’ll give it a go. What’s the worst that could happen??? I get fired from a discount store or a restaurant??? No biggie!
I did find an interesting article about Mayo coming closer to finding a cure for ALS.

http://www.news4jax.com/health/29255222/detail.html

Now I’m off to attempt to be productive!!!

Drinks Anyone???

This Saturday was spent applying for jobs I "might" be able to do and hardly anything else. I have been drinking. Yes, I know, I shouldn't on the meds, but unless a person can tell me they feel everything I'm feeling in terminology I comprehend, I don't care. One thing I've noticed since I started to drink is that my symptoms have seemed to get better. Is that because they weren't going to show their ugly face this evening? Or, because something about the drinking has "helped" my symptoms? I still have some, but not nearly as bad as they were starting to get earlier this afternoon. The xanax seems to make it worse, and the klonopin knocks me out so I don't know what I'm doing (other than the frequent trips to the potty-store)(I drink lotsa the H2O's). The Lyrica helps a (very) little amount with the muscle pain/weakness/burning. But, the big thing is... My knees haven't been tremoring nearly as much as usual. They were before I started drinking. So, what happened? Isn't alcohol bad for us? I mean, everyone thinks I'm drunk all of the time anyway.... and sometimes I even question myself with how "out of it" I am and "dysfunctionally-related to gravity" I am. But, sincerely, since this started, I haven't been drinking a lot. A glass of wine here and there or a beer. But I haven't been drunk in ages. I'm still doing the "relaxed-shaking" whilst sitting, but the walking is better.... Is it alcohol??? Or, am I just fooling myself? Maybe wishful thinking... If only that worked with the healthy things in my life. :/

"Alcohol also helps to increase the release of dopamine, by a process that is still poorly understood but that appears to involve curtailing the activity of the enzyme that breaks dopamine down."  ----  http://thebrain.mcgill.ca/flash/i/i_03/i_03_m/i_03_m_par/i_03_m_par_alcool.html

This makes me seriously question the thought of P.D. No doctor would encourage alcohol consumption. There's no way of getting an accurate answer to my question of "Does alcohol help neurological symptoms?" But, I have read where a few people have agreed that alcohol lessens their symptoms... And, as mentioned previously.... If we seem drunk anyway, what's the harm?!

Survived The Night

Good morning. Here is the part where I teach my body to move after a sleep. I do this by walking short distances until I get the hang of it and frequently sitting. My shaking isn't as bad in the morning, just the moving. I feel stiff. I feel like I'm 100 years old. But, after some practice I'm pretty sure I'll have a few hours of close-to-normal movement before the wretchedness of malfunctions start.

Last Night's Adventures:

I went out, saw friends, saw family, and was donated a cup of light beer. Although it was great to see everyone, I can't help but get angry about the way I show myself now. And, ashamed to know how I was and how I am now. The constant horrific movements and my speech... well, coming and going like it does, no one can tell that I'm actually having issues. It's not that I want them to know, but at the same time when they don't know, they make jokes because they don't know. I'm not upset with them, but that increases my distaste for myself and my condition. I was told by my future mother-in-law, who has seen me more often, "You look like you're doing better. You look happy and not all doped up. Are you all doped up?" This was said as I was standing outside smoking a cigarette. My knees wouldn't stop shaking and my gait was laughable. I said, "Yes, I'm doped up. I'm always doped up. I'm just not doped up on the one that makes me AS drowsy." She was trying to be nice, but it came across as a pity compliment. I love her and she loves me and I know she worries and just wants the best for me and her son, but it was so obvious that I was not doing better. Maybe I'm making it out to be more than it is. Maybe I wasn't that noticeably awkward. I do know that it was hard to walk and hard to sit still. Sometimes I am headed for a destination and my legs just stop on me. And, I have to think really diligently to get them to move again. And, sometimes I have trouble lifting my feet. Annoying.

The night was fun... and funny. It was great in spite of my difficulties. I stood at the bar for several minutes thinking about what I wanted to order. What can I afford? That was the main question. Then the realization that even if I ordered a drink, I wouldn't be able to walk it back to my table without spilling it all over everyone in my path. So, I sat back down at my table waiting for the show to start. There were a lot of, "How are you?"'s and "I'm great."'s floating around the smoke filled venue.

Yes, take away all of the physical, I'm great... Oh, and all of the financial worries. And, I'm not trying to complain. It could be so much worse. It could get so much worse. I am honestly thankful, if I'm going down one of the paths I think I am, I'm thankful for even the difficulties of today.

Now, money... That's different. I'm in the waiting stage of the game for all forms of assistance. I wasn't able to perform my job anymore, so that income is out. My partner is providing for us, but he's broke after the bills are paid. I have insurance, but there are co-pays. How many consultations and introductory sessions with specialists does it take to obtain an overdraft fee???? About 2. We need some groceries. We're thugging it with cereal and pb&j right now, but soon the bread and milk will run out. Personally, I'd prefer cigarettes to food because the action of smoking and the concentration it takes, helps my body and brain at lease feel aligned for a second. He doesn't understand that. His hope is that I quit, but he'll settle for a cut-back. He's also never been here.

With him, it was his body. Only his body. The only time he couldn't focus was during a painful spell, and nothing is available to help in those times. I'm going to accept the smoking argument as an agreeing to disagree topic, even if he doesn't.

I came home and took two very low doses of klonopin and fell asleep.

My  kiddo is with her dad on the weekends. I hate to say it, but her being away does give me some breathing room. I hate for her to see me like this. I hate that I can't read her a simple bedtime story with grace and enthusiasm. She's understanding though... for a five year old.

My Thanks Portion:

I'm thankful that I woke up this morning. I'm thankful that I could type. I'm thankful that I have friends and family who love me. I'm thankful for the sunshine regardless of the heat. I'm thankful for soda, and I'm thankful that everyday I have the optimism, even if only in the morning, of being myself again.... myself as I was before. I'm thankful for vitamins, tea, water, and coffee. And, I'm thankful to have a house to live in.

Now Onto The Saturdays and Sundays!

What does the weekend have in store??? We shall see...

Oh, Dear Friday...

So, today things haven't been exactly great like they should have been. I did take my vitamins and pick up the letter at the post office, but the whole time my knees were shaking. I look insane! My prescriptions weren't even touched yet. I went ahead and took them back. Another pharmaceutical location, here I come! I am going out in public tonight, and I'm a little nervous about it. My body just doesn't do right. I'm twitching and moving oddly and I def can't depend on my speech to cooperate. The people who I will see tonight last saw me when I was pretty much acceptably passable as "normal." I started on the wine early. This may not have been the best action to take, but what else am I to do? I don't know what to wear. I haven't done anything around the house. I did find twitter, though. Small steps towards victory, right?

System Malfunction

My morning started with the inability to wake up… The consequence of this was a rush to get my 5 yr old to school on time. She was ready; I wasn’t. We ran out the door (by run I mean, I focused intensely on moving my legs in a fashion that would be similar to walking). We made it to the school drop-off car lane, and we weren’t the last, so I didn’t feel as much of a failure as I would have if our car was alone.

After I arrived home, I took my last Lyrica and an antihistamine. I’m still mustering the energy to take my vitamins. I also noted quietly in my mind, “I need to pick up my refills and find a way to pay for the meclizine my insurance won’t cover.”

My partner makes me a list every morning, my honey-do list. There are usually only two things on the list. I typically can only mark one off the list. I still don’t know why I can’t just complete the simple tasks he requests. Is it because I’m so entertained by self-induced failure? Or, because I get so distracted so easily? Or, is it because I’m getting lost in the internet? Or, is this an OCD-related compulsion to NOT mark off EVERYTHING? A fear that if I mark off all of the items, something horrible will happen? Or, maybe I’m just lazy.

Today the job assigned to me by him was “go to the post office and pick up his certified-letter.” I attempted this yesterday, but I went to the wrong post office. And, because I had procrastinated until so late in the day, the correct post office was already closed. What would possess me to go to a random post office to pick up a letter at a specific location??? Now I know.

Today the jobs assigned to me by me is, “find out why it’s taken beyond the 7-10 business days to get my medical records from my g.p., dishes, laundry (child's bed-wetted sheets (daily chore, almost)), find a way to make money off of recycling plastics and glass, get prescriptions, and take vitamins.”

Currently, I am not doing any of those things. I am writing and listening to a pod cast of NPR’s Fresh Air (about David Cassidy J ). I don’t know exactly what I want this blog to do for me or others. I guess, I should say, I know what I want this blog to do, but I am not sure I know how to do it. I find that I spend so much time focusing on making my fingers type correctly and re-reading what I’ve written in order to stay on track. I’m including my current symptom list. Maybe someone will read this, maybe not.

One of my more recently occurring symptoms is a knee tremor… Is it a tremor? I’m not sure what a knee tremor would feel like. While at the store last night, I was very obviously having difficulty walking. I looked silly and visually annoying. My daughter told me to stop. I told her I couldn’t. She then hugged my legs in effort to get them to be still. She’s so sweet sometimes.

My leg shaking (different than the “tremor”) has always been with me. I don’t know if it’s nerves, but that has gotten worse… more of an “every time I sit down” thing. My muscles feel so weak, I wonder how they have the strength to keep moving!!!!

As for the section I want to use for Henoch-Schonlein Purpura, I intend on documenting everything my partner and I went through in order to get this diagnosis for him. He is in his 7^th month of treatment. He goes on a steroid and then a different drug to help control his symptoms because the steroids are only allowed to be used for a certain amount of time because they lower the immune system. His case is not common. Most of those diagnosed with this disorder are young boys (children), and it resolves itself within a reasonable timeframe. As an adult, this disorder can last much longer and be more intense.

We must be blessed, or, special, or, just plain unfortunate to find ourselves on two different long journeys of medical discovery within one year. Immediate answers would be nice, but that is never how it works in medicine.

To pass time while awaiting a neurologist’s consultation and an ENT appointment, I’m looking for answers myself. I think that’s what we all do when we’re dealing with health issues. I haven’t found any definitive answers for me. I was able to find HSP for my partner as a probable cause of his symptoms, but with neurology there are so many questions. And, that’s what we’re left with.

Here is my symptom list for those interested:

Symptom List  (Starting from mid-July 201
ConstantDizziness/Vertigo/Litghtheadedness
Fatigue
Weak muscles (core, arms, legs, neck, fingers, etc.)
Headaches (dull-intense/sometimes sharp pains on both sides of head)
Lack of balance and coordination
Night sweats
Restless Leg Syndrome
Muscle aches, pains, burning sensations
Intermittent
Muscle spasms/twitches (toes, ribs, right flank, hands, abdomen, eye area)
Vision – blurry, words show fuzzy or mix together, room appears darker than it really is, sharp pain behind eyes
Speech – difficulty manipulating tongue, slurred, stutter
Shooting pains (hands, feet, shins, back, rib cage, head, eyes, elbow)
Deep muscle irritation/”itchiness”
“Electric shocks/Energy” (arms, legs, neck, head) (L‘Hermittes Symptom)
Tingle/Itchy (palms, soles of feet)(odd tingling sensation on scalp)
Skin – feverish pain with light touches/clothing
Deep muscle aches (upper back)
Knee pain
Walking – lean/sway/trip/run into things/knee tremor
Tremor – right hand most affected, knees
Itchy skin (between fingers, face, nose)
Numbness – left toe/palm/etc.
Difficulty focusing/staying on task/keeping thoughts/memory/front of head feels “fuzzy”
Weakness between foot and shin
Beau's Lines

NOW, I must go to the post office!

One

I find my talent for writing blogs lack the appeal that I desire. I've attempted in the past. Failed attempts that attract little or not attention or interest. This leaves me apprehensive about even trying my hand this time.

I know blogs are often like journals - I've never been any good at "journaling" either.

Begin Tangent:

As a young girl with crushes and secrets filling me like helium in a hot air balloon, even then my diary (or diaries) stayed stashed in a drawer. Of course, I always wanted to have a fancy diary (grown-up-like) with a modest cover and a lock. I always kept my collection of diaries in the top-middle drawer of my dresser. It was where I kept all of my secret and most treasured belongings. That tiny middle drawer was the only drawer with a lock. Sure, it may have only been protected with a skeleton key, but that was the most protection this young girl could get.

~End Tangent~

As an adult, I find I have very few secrets, and in today's atmosphere of the World Wide Web, even if I had secrets, the world would have access to them. So, I am giving in and sharing myself with anyone interested in knowing me, my difficulties, my challenges, my strengths, and my overall and progressive weaknesses.

Really, what I want are answers. Don't we all? Although, I am doubtful answers will be found through writing in this blog, maybe someone somewhere will read the struggles and accomplishments of  real-life person who has no answers and find comfort. Or, perhaps someone somewhere will have stories of their own to share. Or, maybe taking this chance to write everything out will, in some way, will lead to self-discovery. Who knows? 

The daily life is what I want to document - my daily life with a partner who has been diagnosed with Henoch-Schonlein Purpura, a daughter who just started Kindergarten, and the out-of-the-blue symptoms that have turned my existence upside-down.

My Daily Goal:
Write, Read, and Find (Oh, and complete my honey-do-list)

Note To Self: Go to the post office, pharmacy, and fold the laundry!!!!! These tasks won't complete themselves, you know....