Appointment Today

I have an appointment later today with my neurologist. I am excited about this because this is the longest I have gone without a seizure.


Today was a chill day. I hurt too bad to continue moving. I slept most of the day. Probably has part to do with the low calories or maybe the shitty diet? Or could be because I sometimes can’t stay awake.

I also think it has to do with the way I am eating. In order to get enough calories each day I am eating like crap. 

So, starting tomorrow, I am going to eat how I want to eat and not worry so much about calories.

  • More water
  • Healthier food
  • Stop worrying about calories


If the doctors are that worried about my diet, they can come to my house and fix my meals… or, I dunno, listen to me and figure out why I have no appetite.

I will update later about the appointment.

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Staying awake… Sleep Study Tonight

I wanted to work on a post today but I am staying awake for my sleep study tonight. It seems a tad silly to me to have me off my sleep schedule to see how I normally sleep.

Normally, I don’t stay awake for 24+ hours before I sleep. If I do stay up that much, I wake up tired when I do sleep.

At least yesterday I slept in. For me, that meant no alarms. I woke up at 3 p.m. It felt weird actually. Night hit sooner than I am used to. It flew by really.

This morning when I should have been sleeping, I was trying my hardest to stay awake. I fell asleep for a bit. My kids woke me up. I just couldn’t do it this time.

Last time was 31 hours of no sleep. This time it will be 28 hours with a small nap.

I can not wait until tonight. I  so tired my eyeballs burn.

Mailbag! Fatigue, Sleep, and AWESOME!

What? Cabinet Peaks Medical Center gets a good review? Even though my appointment was cancelled? Am I okay? YOU BET! I even have a little award for them at the end of the post.

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View from Cabinet Peaks Medical Center

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I am getting a sleep study tonight. I was enjoying the view and thought I would snap a pic to share.

This is the view from Cabinet Peaks Medical Center Chemotherapy Center. The sleep lab borrows it for their sleep studies.

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And the bed looks comfy… and has a massage feature and seems comfy as heck.

Mushrooms and Vitamin D

Since I am severely Vitamin D deficient (mine was 6 the last they checked) I have tried vitamin D supplements. All of them make me sick.

  • I feel like I have the flu
  • My skin feels like it is on fire
  • My skin hurts
  • My body aches
  • My bones hurt!
  • My eyes feel like sunshine is coming out of my eyes.
  • I am so exhausted that I can’t stay upright.

But since we are left with “try mushrooms and lichen” or “get shots and dialysis”, I decided to suck it up and try my damnedest to suffer through some mushrooms charged with Vitamin D.

Mushrooms and Vitamin D.jpg

I did a lot of research on this and found that if you take mushrooms (Portobello and shiitake are what I am going for) and lay them upside down in the sunshine (stems removed) they create Vitamin D. Then you eat them and VOILA Vitamin D supplement that is as natural as I can get.

One problem. Every time I eat the mushrooms, I feel like crap. Not as bad as the other supplements but I still feel ill. Compared to above:

  • My skin doesn’t burn (that’s a positive)
  • My skin doesn’t feel like it’s on fire.
  • It does itch though but very mildly.
  • My body aches but not as severe.
  • My bones do not hurt.
  • I am still exhausted but not all the time. I comes and goes in waves.
  • My eyes feel puffy but not bad.

BUT it does have a few other side effects.

  • My stomach and abdomen does this weird flip-flop thing where it feels like there are spasms running through them, like I am getting kicked in the gut, then I am hit with MASSIVE waves of nausea and dry heaving.
  • I get a fever. Usually mild. The worse was 102.4 or something close.
  • I feel like I am freezing to death.

I am debating now how much of this I can tolerate. I am still doing it a couple of times a week (because I can’t feel like shit 24/7). The symptoms last about a day. I am planning my mushroom doses with when I need to be active and marijuana is helping with most of the symptoms.

If this doesn’t bring my Vitamin D up into a better range, I am seriously going to have a sobbing break down… snot bubbles and all!

Just thought I would update since today was a mushroom day and I wasn’t able to post earlier because of it. So, about two days a week, I may skip posting. I am planning for that.

Neurologist Appointment and Medical Marijuana

Not looking forward to the next week and a half. Went to my neurologist yesterday. I am not really impressed this time. Never had a doctor roll her eyes at my son while he was talking to her. And she seemed short and rude with us. Just Cabinet Peaks bullshit trickling down to my other doctors? Or maybe she had a bad day?

I mentioned not wanting to be on man-made medications because they cause me so many negative side effects. She got real snotty and said “Everything has side effects, even herbs.” When I explained that I don’t have side effects to herbs though, she shot back “But everything has side effects. You can look up side effects of marijuana and get a list of side effects.” She was a real bitch.

Let’s see… Here is a review of the meds.

I was always so nauseous from the pain that I had to take Zofran. I couldn’t eat because I hurt so bad and nauseousness was too much that I had no appetite. The doc gave me Zofran for 3 times a day but medicaid will only pay for 15 pills. I couldn’t get the rest filled. So I got to pick which meal I wanted to eat every other day. And I could only eat a little bit or I would throw up.

Cyclobenzaprine: On it because my muscles were always so tense that I hurt like crazy. I walked like a 70 year old. The joints in my body did not want to bend correctly (hence, the walker) and my muscles BURNED like they were on fire ALL. THE. TIME. Cyclobenzaprine made me sleep. I thought it helped loosen my muscles and I slept so much on it that I felt like I got sleep. I was on this so long it stopped doing anything except making me sleep.

Clonidine (for anxiety): I slept. A LOT. I also had diarrhea of the mouth. If a thought popped into my head, it fell out my mouth. I turned into a bitch too. I would be fine one minute and then just snap at everyone the next minute (and again, I am SO SORRY). I felt drugged. My heart would race randomly and flutter toward the end. I still have palpitations sometimes.

Gabapentin: While it helped take the edge off the pain, still could not do anything. Made me sleep 2/3 of the time every day. Literally, I slept most of my days away. And I was still like I was before: I could not bend over to pick anything up. I could not cook. I had trouble dressing myself. I had trouble showering. I could not walk to the store or go anywhere without that damned walker unless I planned it right. And by that I mean, do not do anything at all the day before or that day. And that only worked if I wasn’t walking there. Can we say weight gain!? I am still trying to lose the weight. I gained 50 pounds! I can’t fit into my clothes anymore. When they increased the dose, I would take a dose, sleep until the next dose, take that dose, sleep until the next dose, etc. So they lowered it back down and tried other meds with it.

Then they added Keppra for me to try. I was apathetic. I did not care. I would have been suicidal but my give-a-damn had busted. If a truck ran me over, I just didn’t care. I didn’t want to throw myself in front of one though because that took effort. I just sat in my chair not caring. It very much reminded me of Wellbutrin. Nothing made me happy. There was no joy, no happiness, no love. I felt nothing. Just a huge gaping void in my chest where my heart used to be. I cared so little that I could not make myself call the doctor to let them know something was wrong. I did have a moment of clarity and vowed not to take it but it still took me a week to call the doctor because I still did not care.

Then they tried Lamictal. I asked about the “Lamictal rash” and everyone assured me that it was so rare that I did not have to worry about it. By day 3 (I think) my skin hurt so bad I could not be touched. It felt like I had a massive sunburn. I had a pretty rash and little itty bitty blisters across my back and mentally I was a wreck from the pain. It hurt so bad I wanted to die. (figuratively, but not suicidal)

Then they put me on Topamax, which my friends online lovingly called Dopamax. Hahaha. Wow! That was one bad acid trip. I locked myself in my apartment an could not make myself leave. I became paranoid and thought that everyone was cohorting against me. I felt like Alice in Wonderland. Things that were across the room looked like they were a mile away and anything with in arms reach looked like it was 2 inches from my face. At times I felt like my whole body filled my living room and I was HUGE and other times I felt like I was a tiny little kid sitting in a gigantic chamber. I got obsessed with doing everything in a certain way. I couldn’t turn off a light without a ritual that went with it. And I was terrified to call the doctor because I thought they would think I wasn’t trying. I look back now and I am horrified at how I was.

Enter medical marijuana (MMJ).

No more clonidine. I don’t need it. MMJ helps my anxiety just fine. Actually better than clonidine did.

No more Zofran. MMJ helps my nauseousness. It also helps my appetite so I am eating more than I did before.

No more Cyclobenzaprine. My muscles relaxed. They didn’t loosen, they relaxed. They aren’t tense anymore. I can bend again! I can touch the floor!

No more Gabapentin. MMJ helps with the pain. I do not need to keep taking something that just takes the edge off the pain because MMJ helps totally with the pain. No more searing joint pain, no more electric shock feeling running through my legs, no more extreme ripping pains in my back. It took my pain and made it almost gone. I’ll take a level 2 pain over level 7 pain pain ANY DAY!

I can move again. I can walk without my walker all the time. Not just when I am not dying in pain. I can stand up for a little bit. I can clean house for about 30 minutes at a time. I still can not lift a lot but I can still stand and clean! I can cook a small meal again! I am independent again!

Other good side effects:

My angioedema attacks are fewer. My allergies are calmer.

My joints don’t kill me. I still feel like my bones are grinding together in my lower back but the pain is so much less that it barely bothers me.

AND, something I do not talk about a lot, I can feel my crotch again. No more accidentally peeing myself because I can’t tell when I have to pee until it’s too late (as in, as it comes out). I can tell when I have to pee WAY before it’s critical. I stopped retaining urine. No catheters in FIVE MONTHS!

I can walk to the store and back WITHOUT planning and WITHOUT a walker. I am walking like a 39 year old again.

I feel happy again. I have joy and purpose in my life again. I got a sewing machine from my ex (Thank you Mendel) so I can make clothes and bags to sell. I spent the last week or so relearning the sewing machine, practicing stitches, and refreshing all my skills. I still have to sit down while working, but I CAN DO IT! I couldn’t do this before.

I don’t feel like I am going to freak out and cry on a daily basis. People come around again. And for the first time in YEARS, I actually WANT to go out and do things. I WANT to be around people again. You have no idea how great that feels.

For the first time in a long time, I WANT to listen to music. Noise doesn’t make me hurt. It’s not too much stimulation for me.

It also has helped my seizures. I went from having them all the time to maybe 2 or 3 a week. I’ll take that!

I sleep about 8 hours a day now instead of 16-24 hours a day. Except for the occasional sleep attack which lasts a couple days now instead of weeks to a month.

I am a completely different person now.

Okay, I know you are wondering…. The negative side effects:

I get a bout of “the stupids” from time to time. Usually right after taking it. I have trouble following a conversation. I found that if I take ibuprofen with my dose, it helps block this effect. Finally, a use for ibuprofen where it works!

Yep, that is it. That’s the only negative side effect. Done with that list.

Back to the neurologist:

I am considering finding a new neurologist because she didn’t want to listen to me when I told her I don’t have side effects to MMJ. She also looked up Trileptal because Miles and I both said we were still confused as to why I needed it when MMJ was working. She looked and the other one said it was for my “headaches”. Funny, because he said I needed it since I was not on anything for seizures. O.o

But for now she took me off medical marijuana for a long term EEG (check in at noon, leave at 5 pm) which happens on the 28th.

Yesterday would have been a take day (since I take it every other day) but I skipped it since I saw the doctor before my take time.

Today, I woke up hurting and with a mild angioedema attack.

My waist down to the soles of my feet are feeling numb-ish again. I barely made it to the bathroom earlier. When I sit in on position for about 5 minutes, my legs start going numb. I can’t really feel my feet.

My joints are killing me. My muscles feel like I lifted 300 pound weights and keep tensing up. So I won’t be doing anything until after the 28th. The boys went and got my walker out of storage.

I can’t straighten my back again. I started shaking from the pain. I am almost in tears from the pain. How the hell did I do it before?

My chest hurts again. I feel like an elephant is sitting on my chest. I feel like I am on the verge of panicking and screaming, partly from the pain.

I feel like my bones are breaking. I have sharp shooting pains from my joints. I don’t even want to move.

It already hurts too bad to cook anything again and my steamer died so I am at the mercy of my kids cooking (which is tasty cooking but I hate asking them to make food). I have no appetite today and I am so nauseous I could puke so I am guessing this won’t be a huge issue. Back to barely eating.

This better be worth it. And hopefully the Neuro-doc will act more like the first two times I saw her because I was horribly unimpressed this appointment. We will see how this goes.

Overall pain level lately: 2-4 depending on the day.

Overall pain level today: FUCKING SEVEN!

Woah! Sleeping Too Much! Where Did The Time Go?

Holy crap! Where did my time go? I swear I slept most of August. I think it’s mostly because of the heat. I got hot and then I start itching. Once the itching starts, I start to feel like my skin is burning… like someone poured acid over my skin. Then I get cooled down and I am just EXHAUSTED! I don’t mean “a little tired but coffee will keep me going.” I mean “Night ya’ll! See you when I wake up which will probably be two days from now!”

I spoke to the doctor about it. She is still new to me so she is still learning about me. She mentioned my medicines all can cause “drowsiness”, so I may just be tired. When she thinks of “tired” she thinks I am slogging along, drinking extra coffee, propping my eyelids open with toothpicks, and moving slowly through the house getting things done.

She pictures this…

 

I got this pic at http://merrymusing.wordpress.com/2011/10/21/tired-from-work/
I found this pic here.

 

But I am actually functioning more like this…

My son and our kitten sleeping.
My son and our kitten sleeping.

 

I started logging my sleep on my android phone using the sleepbot app to better explain this to my doctor. First, I have done this sleep thing for years, before moving to Montana, before sleep apnea, before all the medications, before anything drastic happened in my life. I’ve done this since I was 16 years old. Yep, I have done this for 23 years. I happened to get mono from my boyfriend. My mom knew something was wrong when she couldn’t wake me and keep me conscious. I slept for a week… or so. I don’t remember. It slowly got better and I went from 23 hours of sleep a day (not kidding) to a more normal sleep cycle of 10 hours sleep a day.

Well, I told the boys to not wake me during the last cycle and explained I was trying to document the erratic sleep cycles I have. So, My oldest son (who is an adult) took over and I just logged sleep. Here are some of the more impressive ones from my sleep log…

13 August: 14.4 hours of sleep.

14 August: 18.4 hours of sleep.

15 August: 14.1 hours of sleep.

Brace yourself…

16 August: 23.2 hours of sleep.

17 August: 15.1 hours

18 August: 3 hours. Yes, that is three. I am not missing a one.

19 August: No sleep

20 August: 25.8 hours asleep. TWENTY-FIVE!

21 August: 11.7 hours of sleep… not counting the 1.8 from the day before.

22 August: No Sleep.

23 August: 20.1 hours of sleep

24 August: 14 hours of sleep

25 August (my birthday): 7.1 hours of sleep.

It was that week of my birthday where I started coming out of the sleeping beauty phase and now I am sleeping more normal amounts of time again. Usually my sleep is between seven and ten hours. On days I take all my medication, it could be a 12 or 14 hour sleep day. Even without medicines, this has been my life for years. But the roller coaster sleeps that I get, it could be no sleep to three or four days of sleep. Although, I do set alarms to try to wake me. That doesn’t work though. AND I am a moody, starving, irritable person when I am awake. I try really hard to not be mean but I just can’t help it.

BUT, I don’t have chronic fatigue… says a long string of doctors I have gone to throughout the years.

This doctor though, believes I have Fibromyalgia. All of my symptoms suggest Fibromyalgia. Although, the sleeping beauty roller coaster ride I go through is a touch extreme. She is sending me to a Rheumatologist to make sure we didn’t miss anything. I like this doctor!

So, now that I am functioning more and awake, I will be updating more. I’ll try to remember to post if I am heading into a cycle so you guys don’t think I just fell off the planet. Sorry about that, Java.