Lyrica!

After a very painful night, I had a fantastic morning!
Decorated for Halloween, had a shower, I am actually wearing clothes today. (Instead of my usual pajamas) running out of steam now.. Pain is starting in my shoulders and tops of my thighs.

Gene counseling was easy, yup need the test for BRCA1, yup I have a 50 percent chance of having it. It is getting sent to the insurance and hopefully I will get an answer within a few days.

I had someone whom shalt not be named, donate three months worth of Lyrica to me! 🙀😻😻
Granted its a much lower dose than I was taking before, but I am soo thankful to have it at all. I need to research about drug interactions with gabapentin.

Yay Lyrica!! I am excited to get some pain releif!

The Price we Pay

Had a fairly good morning!
Luna and Bruce got a bath and nails done. James swept and mopped the floors. We both cleaned up the bedroom. My body hates me now.

Tremors really bad. Pain has settled in my shouulders and neck. It does radiate into my biceps and all the way to my wrists. Pain so bad I had to take a pill. I Have rice socks on both shoulders. This sucks.

I have a gene counselor appointment tomorrow.

Bladder Pain and Nausea

Bladder pain is back with full force accompanied with Nausea. The only way to get any relief is to sit indian style and lean back. Taking zofran for nausea.

Started my 3 day pee recordings. All that goes in and comes out.

Have not been able to get ahold of anyone at snows office about Lyrica. Have left three messages.

Random notes....

October 25th
New symptom - left leg from my knee down is opposite in cold/hot sensation. Tingles radiated down my leg.

October 27th
Severe bladder pain has started...Nausea. Took red pee pills. Bad arm leg pain.

8:22 eyesight is changing. I cannot see up close, its very fuzzy. I have to move either backwards or forwards to focus on things. Makes me a liittle sick. Bad arm leg pain.

Appointments

I have posted several posts today!
Some of them had been half written snd saved but not published til now. This post is to remind me what I am doing appointment wise.

10-31 @ 10 am - Genetic Counseling via phone
11-2 @ 11:30 - Psychiatric appt with Dr. Drymalsky
11-8 @ 4:00 - Urologist appointment
11-16 @ 7:30am FINALLY an appt with Neurologist Dr. Kreiss
11-17 @ 1:40 - Check in with my primary doc Dr. Snow

Prednisone step down

Today is an unpleasant day.
A lot of stress in my life right now. Restless Body Syndrome and pain have been increasing throughout my day. I have stepped down from 35 mg pred. to 30 mg and my physical and mental capacities are being affected. The range of emotions I am feeling is exhausting. I am tired of crying and having this overwhelming sense of urgency that I should be doing something, but I do not know what. I get very confused easily. Hot flashes and a swelling throat is no fun either. Mental side effects are much worse in my opinion.

I had a meltdown because I made "snail jello" for my aquatic mystery snails a while back and I have been meaning to cut it up and freeze it but my arms have been hurting so bad. It has been on my to do list... I guess it has been more than a week before making the batch because it has now gone bad. It's the little things like this that tops off my stress and I lose my shit. Like end of the world kind of anxiety, I just want to lay in the floor and die type of depressing thoughts. I know logically its the MS and Prednisone, but the part of my brain associated with emotion doesn't care about reason. Its days like this that I want to give up the constant fight. My arms/neck/shoulders/back ache so bad. Pain management is another issue to bring up with dr.snow.

Love/hate relationship with Prednisone.

I am trying my best to do what I can for myself amidst this hell and the delusion the the world is ending.I wish I had a personal helper 24/7

To remind myself of what I have done today..
- Called Dr. snow to check on my Lyrica fax... Had to leave a message.
- Called genetecist Dr. Slotnick to see why I needed more genetic counseling... Insurance issues.
I have a phone appt with Gene Screen now.
- Attempt to scan and print needed SSDI information but my scanner printer totally died. Just my luck. We have to figure something out tonight.

Playing catch up

Catching up!

October 23rd
 Sunday night i had another odd spurt of nervous energy.... Restless Body Syndrome without the pain. Such a strange feeling. I was wiping the kitchen counters with flailing spasm hands and wobbly legs.

October 24th
Monday was a fairly good day. First time in a long time I got out and shopped some with my mom and dropped off Lyrica forms to my doctor. It took the energy out of us both. She has a very similar and serious auto immune issue as well. Monday evening was bad. Dread in the pit of my stomach, and a lot of body pain.

- Step down from 35 mg prednisone to 30

October 25th
Serious Bladder UTI pain. Super cloudy pee.... I took my "as needed" bladder pain pills. Stayed in bed most the day with heat on my belly. Very emotional from stepping down from prednisone.

*Note to self - Do the pee study chart.

Overload

Today... Not good.
Very overwhelmed with financial situation. Lots of important things pressing my "I am going to freak out" button. Which consequently sends my body into a MS meltdown. The anxiety and stress feeds MS. It is amazing to me how my physical body shuts down when there is too much mental stress. And my mental functioning shuts down when I have too much physical stress. It is obvious now why they say stress is the worst thing for MS. Yet with an MS diagnosis and having your life as you have known it come to a complete halt, that alone is upsetting. Add your new sudden financial crisis. You can't work, you can barely walk, you have pain , confusion and loss of memory. You are on medications that have exhausting side effects.  You realize it is a fight to get ahold of needed doctors, a fight to be actually heard by them and taken seriously, a fight with insurance issues, a fight to get the help you need, your fight is to constantly prove your condition in a society that doubts you first. Keep in mind your fatigue and symptoms only worsen with each added stress. But stress is what you should avoid to manage MS. What a crappy card this disease dishes out. This isn't a pityparty but rather me putting my feelings into words so that maybe later I can disect each worry/problem into a solution. I get so emotionally caught up with anxiety that I can't think. My ability to multitask is gone. Putting more than one thing on my plate is really hard for me to handle. To remind myself of what the hell I am doing...

SSDI - Trying to say the right things to help get benefits. They say if approved i would get $825 a month which would solve most financial problems. Still need to scan and print all medical records and send to social security office before they will make a decision. Thankfully I have been dilligent in keeping anything medical related. After all is received, it takes around five weeks.

Gene Testing - Apparently my insurance would like me to do gene counseling AGAIN but with a counselor of their choice to determine whether or not I need it. Thankfully phone or video interview. I need to fill out my family tree and history of cancer, and that my mom has the BRCA1 cancer gene, meaning I have a 50/50 chance of having it myself. If that does not seem worthy of gene testing I don't know what is.

October 24th

Lyrica - I dropped off a folder to my primary care Dr. Snow with the needed paperwork to apply for free or discounted Lyrica through the manufacturer Pfizer. I filled out my bit, he has to fill out his bit... Sign and fax it. After they receive it it takes 5-6 weeks.

Other resources - Waiting for the financial help information from the National Multiple Sclerosis So iety in the snail mail. Included would be the very few resources available to me in Nevada.
One resource may be assistance with utilities.

Budgeting - I had left budgeting up to James to try to decrease my stress, but that is not working out as we are short on money every month causing worse stress and anxiety than if I had just done it myself. I am going to suck it up, take my anxiety meds and create a better plan for us.

Dog Food - I have yet to apply for assistance for this, but there are resources in my area.

Nervous Energy and Clean Dogs

Today was weird..

I had a panicky emotional morning.. after some anxiety meds and some MM everything was bearable again. I had a break in my pain this afternoon!

I took that opportunity to get our dogs washed and dried with the help of James. As a dog groomer I am appalled to say my dogs stunk like DOGS and their nails were getting long. Armed with MM and a pain pill I was able to blow dry while James washed.

Gold star goes to me for physically accomplishing more today than I have in the past week or two. And I have clean dogs!

*NOTE* To self.... no bladder pain but VERY cloudy pee today.
Also.. the TWITCH IS BACK! :( Right Eyelid.. same spot.

I feel odd right now. Almost manic..
I feel like there is a 3 inch aura of nervous energy around my entire body. I guess I could say this is restless body syndrome without so much pain. It definitely feels odd!

I am thankful for whatever this is, and just hope I don't have repercussions from getting the dogs washed...

Flowers and Resources

My mom came over to see me today, to help me with filling out some forms trying to get Lyrica through the manufacturer. Also started filling out SSDI as that would greatly help right now. Many people get denied multiple times, and can take years to get help unfortunately.Our rent is coming up short every month...

Thank you for the flowers mom! And everything really... I am so thankful to have you in my life.

I want to continue to do what I love! I love working with the dogs and grooming and an MS diagnosis is pretty crappy when essentially your profession is a focused scissor-ninja. I have to beleive that things will  ease up.

Pain got really bad today, even with MM. I had to resort to a pain pill and heat blanket on my back and arms. The pain has seeped into my shoulders and is radiating down my arms, sometimes I get sharp electrical pains shooting down my body.

Sucks.

Just trying to hang on!

Not a good Day

Arm pain and fatigue is pretty awful today.
I did not get much peace this morning before the pain settled in. Heating blanket and MM can only do so much. I figured there was no use laying in bed crying in pain so I took one of my two dillaudid pain pills I have left.
One left.

Also, worth mentioning.. I am having some bladder pain again. Not horrible pain but noticeable. And.. Having to pee like every five minutes but I can't go very much. Sound familiar?? Not cool...

Love and hate with Prednisone

Fatigue and pain is bad today.
I had a good morning.... I even pushed through then pain and cleaned up the kitchen counters. The longer I carry on with my day, the more my symptoms increase in severity.

Nothing new really.
Restless body, aching pain in my bones, severe fatigue, just really tired. Had a molar chip... Dealing with a toothache in the background. Prednisone can destroy your teeth too! Not only do I have this freakishly chubby face from prednisone, I think my teeth are affected now too.

Edibles are insanely overpriced in my area, but they help releive pain better than flower. There are only four dispensaries so they kind of have a monopoly. 🙁

So done with this

I am having an awful experience with what I can only explain as being "Restless Body Syndrome". Much like "Restless Leg Syndrome" but it is my neck, shoulders, arms, fingers, back, thighs, legs, toes.

 It is accompanied with the all too familiartype aching pain. Everything wants to spasm and twitch, but the more you twitch, the worse it hurts. Rocking back and forth helps some, but I am in bed in tears because of this. I find myself holding my breathe unintentionally because the pain is so bad. 😭😭😭😭😭😭😭😭😭

To brca or not to brca

Woke up feeling okay this morning!
Which Is good, because I had a doc appt for gene testing. I was dreading doing it, but in a few weeks I will know if I have the BRCA1 cancer gene that my mom has or not.

Waves of pain in my arms and legs now.. Eyesight is all messed up.

Moon Face

Today was a good day!
Yesterday was not.... Weird Neurological dreams the past few nights. I feel like I am being pulled in every direction. Wake up sweaty and clenched.

I was getting hot flashes the past few days, and have been very emotional. I realized that it is likely because I upped my prednisone 5mg in order to keep this cold out of my chest. I will keep taking 35 mg until I know this cold is gone, and then go back to 30.

My face is swollen and chubby. Side effect of prednisone called "Moon Face" where you get a really chubby face. Also have been battling acne, another prednisone side effect. I have been on it a few months now.

Pain

Serious pain today.
Up and down my arms and legs... It's a deep ache like bones in ice water. This is accompanied by electric shooting pains. Lots of twitching... Speech impairment. My right hand still does not feel right. Two pain pills left, trying to save them for emergency.

Thankful for my electric blanket and MM. Heat and MM definitely help decrease the pain.

Symptoms: The good the bad and the new.

I have not posted in 11 days.
Some symptoms are better, some have gotten worse.. I need to be more diligent about posting to keep track of progress. I am curious as to How much Lyrica helps me... I took my last sample dose a few days ago. It does take some time for Lyrica to enter and exit your system.

"New" symptom- I have noticed this within the past few days. The first time it happened I looked down, the back of my neck shot a bolt of electricity down my arm and then my depth perception was really off. I had to cover one eye to be able to see anything clearly. This has happened on and off, but without the electrical neck.

Worth noting, I caught a cold a few days ago. It is trying to get in my chest and For the first time in months I have a serious wheeze. I am on prednisone so in theory it should ward off anything settling in my chest.

Also worth noting, I broke out in hives last week. My mom had surgery and I stayed up with her all night. I think it was stress and pressure hives. With my next daily dose of prednisone they disappeared within an hour. Still steadily taking 30 mg of prednisone.

Some general pos. And neg.

Positives:
- Not as many neuro dreams
- My stomach does not feel as icky
- Bladder UT pain is gone! (Yay)
- My right eye is not twitching as much
- Overall pain has been better

Negatives:
- A feeling of constant anxiety, everything is the end of the world.
- Tremors and restless body syndrome have gotten worse.
- Depth perception has gotten worse
- Feeling like I am not right handed and unable to write happens more often