Nausea, Not Pooping, Hot Flashes!

I feel kind of scatterbrained today.

I wanted to note that I have not been taking Macrobid for a little over 2 1/2 weeks. I also wanted to note that I ran out of aspirin about a week ago which I would usually take with my Tecfidera twice a day to prevent hot flashes.

- Note that I ate coffee and eggs on 12/24 and 12/29. My allergic foods. It has been six months! I can now integrate it.

- I have been having awful hot flashes and Nausea for about a week now.

- I have felt very bloated and my stomach hurts off and on for the past week. Feels like my bowels are stuck and any food I put in me just sits in my stomach and does not get digested. I just feel ooky.

I dropped off my pee at Urology Nevada, they wanted a sample a week before Urodynamic study.

Hot flashes from no aspirin?

Nausea, bloatedness from bowel issues?

My mom bought me a big bottle of laxative pills and Prune Juice!

I do have the mix in juice stuff, it is a prescription laxative but I don't think its working.

Stupid MS.

Dr. Rafael Cancelled seeking opinions

I have canceled my surgery on January 17th with Dr. Richard Rafael for a number of reasons. (He is a real jerk, and a bad doctor) I can deal with assholish doctors IF they can do their job well, but this is not the case.

He did not listen during examination when I explained that my last pap smear was abnormal. After a quick exam we sat down at his desk to talk. He was ready to sign me up for surgery, Oopherectomy keeping the uterus and cervix. I thought it odd that he came to this assumption without having ANY test results.He acted irritated that I was even there. I did have many questions!

My mom came with me and SHE happened to have a Hysterectomy due to BRCA1, meaning all reproductive organs out. That was what her OB/GYN recommended. She asked Dr. Rafael what the difference was between Ooph vs. Hyst and what kind of risk of cancer I would have if they did not take my Uterus or Cervix, just basic normal questions. He was very defensive and turned very ugly and said I was getting a free surgery from the state and that costs the state money... he asked my mom "Do you even care?" Just. Wow.

There was a moment of silence where I expected my mother to reach across and punch this man in the face, and I fiercely fought the urge not to do just that myself. We were both totally shocked. What possesses a person to think they can talk down to others? To automatically judge me because of my insurance? As if I WANTED this mutated gene?

He never did answer our questions, and the more information I wanted to know, the more irate he became. He said he would refuse to take the uterus and cervix but did not give a sound reason why. (Not that I necessarily WANT that surgery) but I did want to know the pros and cons of both and make an educated decision. It is not about money, rather it's about me not getting cancer! 

He said I should sign up for the surgery as I would likely not find anyone else to help me.. and out of fear that this was true, I felt pressured to do so and I did. After the fact, more red flags popped up. He did not even talk about hormone therapy and other important things.

After cancelling my surgery, Dr. Rafael called me to say my pap smear was abnormal, and I will need a biopsy of my cervix as there are abnormal cells on it. I had him fax it to my primary care doctor and let him know I am getting other opinions.

 I am seeking a 2nd 3rd and even 4th opinion on which surgery would benefit me the best. (Oopherectomy vs. Hysterectomy).

After a days worth of calling I have 3 OB/GYN appts setup so I can get a well rounded opinion on what I should do... 

Dr. Samuel Chacone: Jan 12th at 10:30

Dr. Holly Ashley: Feb 7th at 2:50

Dr. Dennis Martin: Feb 23rd at 2:00

Pillow Forting

It Has been a while since I have posted.

I feel like I kind of checked out from life for a while. While it's nice to live in a pillow fort, unfortunately real life is always waiting for my return with issues needing dealt with.

While MS has been a hugely physical burden, it has left my emotional state just as messed up. I feel like I go through stages. Sometimes I am really gung ho about staying on top of everything and sometimes I really feel like I want to give up, and for a while I do. I eliminate all stressors and responsibilities and live in my pillow fort. Both literal and metaphorically! 

If I stay there too long I feel guilt which leads to further depression. If I don't go there often enough I am overwhelmed to the point of making myself physically sick. Pillow forting is a fine line. Right now I am trying to crawl out and deal with life again. 

I do feel better and accomplished when I tackle tasks, it's the anxiety anticipating the probable stress associated with those tasks that gets me. I also forget what exactly I should be doing. With so many health issues and doctors I always have the looming feeling that I should be doing something. Sometimes it's just an anxiety, other times I really should be doing something important but I don't know exactly what it is. With my memory being so bad I really do need reminding. 

Multiple Sclerosis, My bladder pain issue, Oral Surgery, The whole BRCA1 thing.. OBGYN's, Surgeons, Hysterectomy vs. Oopherectomy, Boob removal, Keeping tabs on prednisone, Keeping tabs on Lyrica. It does not take much to overwhelm me. Can you see how enticing a pillow fort might be?

14 days of Lyrica

This is day 14 being on Lyrica.

During the first week pain was constant, and my body was doing many strange things. This past week I have my ups and downs with pain, my left foot has not been as numb and tingly.

My memory has been extra awful lately. Is it a Lyrica side effect? Or just MS adjusting to the Lyrica? I guess we will find out the longer I take it.

Stressful day today, spent 6 hrs filling more ssi and ssdi paperwork out. I hope we filled it out correctly. 

Spay date

I have a date!
I will be getting SPAYED on January 17th. Yes, ladies and gentlemen you heard that right...

Hysterectomy to be done as a precautionary surgery: I am BRCA1 positive (Extremely likely to get Breast/Ovarian cancer if I do not get them removed) So... next month!!

Cameras in my Hoo Hah

In a lot of pain today. 

Shoulders arms legs it just really hurts. So I went to my Urologist Appt. yesterday, they put a camera up my bladder and said it looks okay? They ordered a full Urodynamic Study that I will do on Jan. 9th. They could not tell if I had interstitial cystitis or not by looking at it.  Having a tiny camera shoved up your urethra is not fun, they told me it wouldn't hurt at all but I have a narrow urethra so everything hurt extremely bad! 

I have an OB/GYN appointment on Thursday.

I think the gabapentin is out of my system now, I no longer have hot flashes or feel nauseous all the time.

I am still waiting to hear back from my oral surgeon, hopefully they can get me in to have surgery this month.

Appointments

In other news...
Today is day six of taking Lyrica. My left side isn't as funky and I feel more right handed today. My left foot and left hand stopped tingling. I have some pretty bad generalized pain but due to me having my period that is to be expected.

One minor thing I have noticed lately is an occasional tightness in my throat, the same tightness I feel before my throat swells up. This has happened since the beginning of the week, coincidence with Lyrica? Maybe.

- Dec. 12th Monday at 3pm I see the Urologist to see if I have Interstitial Cystitis or not.
- Dec. 15th Thursday at 1pm I see the obgyn to get things going with hysterectomy.

State of Emotions

I am on an emotional rollercoaster.

It is that time of the month, which of course MS hates. Having my period amplifies all my symptoms. My highs are very high and uncannily optimistic, but my lows are extremely low and they scare me with how hopeless they make me feel. Tears flow freely throughout the day. I know that I want to be alive, to live. But when a low strikes, it strikes hard and drags me into a dark place where I have no power. This scares the shit out of me.

I do not say this lightly as I believe everybody has the power to change their situation, but in this dark confused state I can honestly say I am powerless. My will to live is not strong enough, and I find myself calmly thinking of suicide in a dream like state. I cannot even find the correct words to describe the feelings I feel when I am in this dark place. I am not myself, and that scares me. It really sucks to feel like your world is suddenly crashing down around you with no warning or reason. It just is. Clonazepam sometimes takes the edge off if I catch it in time to remember to take it.

This kind of emotional flip flopping makes me feel a little bit crazy. I second guess any decision even more than normal because I wonder to myself: Am I in an emotional funk and capable of making a sensible choice?

Even the concept of losing your ability to reason is enough to get depressed over.. 

My highs are incredibly uplifting. Everything in my life seems brighter. I seriously feel like I could take on the world, and I suddenly have dozens of projects that I want to start. My limitations don't bother me in the least and I efficiently find a way to work around them. I amaze myself actually. Best of all, I feel the warmth of happiness inside of me. I feel fulfilled and full of life. I wish that I could pause my life right there and just stay.

Having a hysterectomy will throw me into menopause. Hormones. Mood swings. I am terrified of the darkness that tries to drown me as it is. It has to be done though.

Lyrica transitioning

My left side keeps trying to lift. 

This happened while I was in the hospital as well but it was mostly my left leg. Today it's my both my left leg and my left arm. In the hospital it got so bad that I had to put something heavy on my left leg so it wouldn't lift up by itself. Also a lot of muscle spasms and clenching of muscles it's pretty painful.

 I still have a lot of tingling in my left foot and today I I am starting to have tingling in my left hand as well. I have this strange feeling of not being right-handed. I think my wires are trying to reconnect, it's the Lyrica trying to work. In the hospital I remember thinking it was the steroids reconnecting my wires but now that I'm just starting Lyrica again and feeling the same feelings, maybe it's Lyrica that saved me.

Maybe lyrica will save me again.

Lyrica has Arrived!

So..

FedEx brought me a package yesterday! Much to my surprise, it was a bottle of Lyrica! Pictured is a one month supply, $550 worth of Lyrica. I have been trying for quite a while to get on the manufacturers free prescription program. They were supposed to contact me when they received my information.. nevertheless getting it in the mail was awesome.

I have been having a lot of pain lately, which makes me depressed. Pairing physical inabilities and pain with mental depression is like having a total system crash. Me being the system.

This damned tooth is a major pain in my ass. I spend at least half my day and half my night trying to make it not hurt. I have talked to the insurance and they have not even received the paperwork for prior authorization to do oral surgery.