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Apr. 24th, 2008

Tsugiri

Still in Migraine Hell

 The cortizone injections still haven't worked.  I got my Depo yesterday (I get Depo every 8 weeks due to endomitriosis-like symptoms caused by my connective tissue disorder), and had to take Relpax yesterday and today due to severe migraines.  I can barely type.

I'm hoping that now I have the Depo in me, perhaps the cortizone injections will work.  Or maybe I just need to try again when I'm not so close to my Depo appt.  (like, within a week); since I get my worst migraines 1-2 weeks prior to getting my Depo shot.  (Yes, I've tried going off of Depo, and also have tried the pill, but neither helped my migraines.)

I just desperately want the injections to work, because nothing else will; and I'm tired of being dependent on pain meds.

Back to being bedridden, I go ...

~ Laura

Apr. 18th, 2008

Tsugiri

Injections Update

Update on this post -

It's not working.

One of the injection sites is swollen, and feels like a pinched nerve.

Since getting my Demoral on Tuesday, I've had to take 10 doses, and then gave in and took a Relpax last night.  I woke up to pain, tingling, and a cold feeling in the back of my head this morning - so I still have feeling in the back of my head.

I'm very exhausted, and feel like I've been beat up.  I'm still hoping that the injections will somehow kick in over the weekend, but that's pretty much wishful thinking.

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Apr. 15th, 2008

Tsugiri

Another Technique to Relieve Pain

I went to my Neurologist today and told him about how my Migraines, Tendonitis, and Trigeminal Neuralgia are getting worse.  He asked me if he had ever given me injections for it, and I told him that he hadn't.  He was really surprised!  He said that he could give me 2 injections into the base of my skull/top of my neck to relieve the tendonitis, migraines in the back of my head, and trigeminal neuralgia.  

I got really excited and said "Can you do it now?"  He went and got the injections and did it right then and there!

It was freaky having injections there.  The first injection was like Novicaine, and he put it in the left side of my neck at the base of my skull.  The other injection was cortizone and he put it on the right side.  The right side injection (where I get most of my pain) was the hardest - I could feel and hear the needle scraping against the bottom of my skull!  I didn't move or make a peep while he was giving me the injections, though.  I'm used to getting injections pretty much everywhere else.  

After the injections, my migraine moved to the front of my head.  I asked him if that was normal, and he said that it is.  He also said that due to the nature of my tendonitis, he couldn't massage the areas of the injections much, so it will take longer for the medicine to spread enough to help.  He said that I should notice a difference by Thursday, though, and to have my mom call him on Thursday w/ an update.

He also said that if this works, I'll be getting the injections about once every 6 weeks - but since I see him once a month (every 4 weeks), it'll probably have to be done at 4 week intervals, or at 8 week intervals.

I'm really hoping this will work, so that I can have some sort of life back.  Lately I just stay in bed 24/7.  Today when I went to the Neuro, it was the first time in 2 weeks that I had left the house.

So, wish me luck!  I'm really optimistic that this will work! 

Apr. 8th, 2008

Tsugiri

Writer's Block: Greatest Accomplishment

What is your greatest accomplishment? What was the journey to get there?
My vision. Literally.

Before I was 10 years old, my mom took me to every eye doctor and specialist that she could find to get answers to my vision. They all told her that I would never be able to see, and to give up.

Well, she didn't; and when she took me to the VA Eye Institute, they told her that I could wear one contact with glasses. A year later, they did a surgery to move a muscle in my left eye so that my eyes would work together enough to wear contacts in both eyes.

For several years due to my poor vision, I had to have my mom put my contacts in for me. It wasn't until I was about 13 years old that I learned to put my contacts in myself by using a touch-and-feel process, and bringing the contact up to the sublexed lense in my left eye to make sure it wasn't inside-out and in the right position to put it in my eye. Since then, I can't stand it when Doctors touch near my eyes.

Even through all of this, my doctors could not find a proper prescription for my glasses that I wore w/o my contacts. Even with the glasses, I was still legally blind. It wasn't until I was 19 and in Business School, using my magnifying glass, that I put the magnifying glass up to my eye, looked around, and realized that if we were to make a prescription of glasses similar to the magnifying glass, I'd be able to see w/o my contacts using glasses.

Shortly after, I showed my findings to my Optomitrist, and he was shocked. All this time, they thought I was using my sublexed lenses somewhat all of the time; but in reality, I wasn't. They immediately sent word around to all of my eye dr's, experts, etc. and fitted me with glasses with a prescription high enough to be a magnifying glass.

Around 2003, my vision started to waiver and I needed new prescriptions for all of my glasses and contacts on an average of every 3 months. We believe that this may be in part to my migraines weakening my vision, but other than that we are still trying to figure out a reason.

In late 2005, my right sublexed lense detached; and in January of 2006 I had a very rare surgery to have the lense removed through the "white" of my eye. Putting in a new lense in the correct position was even riskier than the surgery itself, so I opted to go lense-less in my eye and continue wearing contacts and glasses.

In 2007, my left lense detached and drifted towards the CENTER of my eye - something that at that point was unheard of, and my Opthomologist at the time rejected the idea that that's what happened until she saw it for herself. That day, she called an emergency surgery that had never been done before - removing a sublexed lense from the CENTER of the eye that was at risk of tearing my retina and my cornea.

After talking to all of her colleagues and having a Retinologist on-call, I had the surgery through much complications. Before the surgery itself, I came down with a severe migraine that had me throwing up constantly. They gave me something to settle my stomach so that I would stop throwing up before they could perform the surgery. Within minutes after I stopped throwing up, they rushed me into surgery.

The surgery took longer than expected. The lense kept slipping behind my retina, and the Retinologist had to be called in. They also found out that my lense hadn't completely detached, and was still holding on by a thread. They had to go in deeper than expected to detach the lense before taking it out.

Even though both surgeons took many precautions, the day after the surgery the Retinologist realized that my retina had torn, and I was rushed into laser surgery to fix the torn retina.

Since that day, my eyes have been going through the process of struggling to work together - something that they had never done before, since I had always had one eye be more prominent than the other. I've gone through several glasses changes, tried contacts but at the moment I do not feel comfortable wearing them since they make me feel dizzy. I'm wearing prism glasses that are hopefully guiding my eyes to work together, but the limited vision in the center of the glasses causes more problems, I can't see to my sides and often run into things.

Even at this moment, my eyes are changing dramatically daily; which has all of my doctors baffled. I've taken a Diabetes test to see if that will prove some answers, but am still waiting for the results.

But no matter what, I'm a fighter; and will do anything to restore my vision. I've gone through a lot and to even come this far is an accomplishment that no one could have predicted 20 years ago.

 

Apr. 6th, 2008

Tsugiri

First Entry for a New Medical Journal

Welcome to my new journal.

Currently, my hands are shaking and I'm a bit woozy due to taking Relpax this morning for a migraine; so I'm having trouble typing.  I've written my profile page, and feel good that I've at least accomplished SOMETHING today.  

Eventually I'll copy and paste some of my medical entries from my other (friends locked) journal to this one, but not right now.  Right now I need rest, and possibly a Xanax.  My heart is racing, and that's never good for me.  I feel like passing out.

Feel free to add me to your friends list, it lets me know you're reading; and I'd like that.  But if you'd rather just lurk, that's ok, too.  I'm keeping this journal public.

XOXO,
Laura

Mar. 22nd, 2008

Tsugiri

Blood Test Results!

I'M NEGATIVE FOR DIABETES!!!! I'M NOT DIABETIC!!! YAY!!!

Which ... now gives me more questions than answers. But my mom apparently saw the letter stating that I'm fine, and went out and got a TON of sugary sweets before she left for work. Powdered Donuts, Reeses Pieces, Reeses Eggs, Sugar Cookies, etc.

Maybe I should go and get re-tested, cuz I'm sure that after I eat all that sugar, I'll end up diabetic.
 
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Mar. 17th, 2008

Tsugiri

Went to the Dr ...

I went to the Dr. and he said that the veins aren't thrombosed yet, so no surgery! Yay! I do, however, have to shove 3 pills per day up my arse for 10 days. BOOO. Things should not go UP the arse, EXIT ONLY KPLZTHX!

I also had blood drawn to see if I'm Diabetic. I hope I'm not, but if I am it would answer a lot of questions.

In the meantime, I has a donut to sit on! 

Mar. 16th, 2008

Tsugiri

Possibly Another Surgery

 I have a thrombosed vein around my rectum. It hurts like all hell. There's a pin-sized scab on it from where I bleed every time I have a bowel movement.

I was hoping that the increase of veggies and such in my diet would help, but it's just gotten worse. I finally told my mom about it a few minutes ago and she's going to try and get me in with our gen. physician to look at it and refer me to a surgeon so that they can do something about it now before it gets out of hand like the uber thrombosed vein from hell that scared nurses in the hospital in 2003.

This scares me a lot because I don't like people going near my ass. My ass is sacred, mmk? No one goes near it. Not since that last surgery that kept me up all night screaming because the pain meds weren't working.

Usually I joke around with my Dr's while they are doing exams. Usually I still joke around and stay optimistic when they tell me I need surgery, even when they say "You need surgery today. You might lose your eyesight, too." Yeah, ok, whatever. But this ... NOOOO ... after the last experience I just want to get this over with. AND THEY BETTER GIVE ME SOME DAMNED GOOD PAIN MEDS THIS TIME! Or even better, just put me into a monitored coma for awhile.

Also, why does everything have to happen all at once? Can't I get a break? Pretty please?
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Mar. 15th, 2008

Tsugiri

Mah Brainz 'Sploded Allz Ovah Da Place!

So, I've been posting inquiries in every migraine & Marfan Syndrome community on LJ & MySpace looking for an accupuncturist.

I also have been asking my friend B for info. on her aunt's roommate, who is a therapist that also does hypnosis to treat pain. I've been asking since last year, and I just got another answer from her just like all of the other answers I've gotten before ... "I don't have the info with me now, I'll look for it and give it to you later."

Apparently she does not grasp the concept that PAIN DOES NOT WAIT.

If my Insurance & Medicare weren't so fucked up, I'd be in the hospital right now. I'm serious. I want to be in a hospital bed, hooked up to an IV and given meds. I also want them to draw blood and see if I'm diabetic. I want the dr's to see how I lose some of my short-term memory and have trouble finding words and talking due to intense amount of pain, whether I'm on meds or not.



FOR THE LOVE OF GOD, YES! STOP STARING AT ME AND DO SOMETHING!

Feb. 15th, 2008

Tsugiri

Writer's Block: It's Hard to Describe

What is one thing you struggle to describe?
 My disabilities. If I mention the medications I'm on, people will sometimes get the wrong impression and think I'm some sort of drug addict. People look at me and think I'm fine, that I'm cheating the government by being on SSI. But they have no idea what is going on in the inside. They can't see my bones, my joints, or see through my eyes; and it's hard to describe the amount of physical and mental pain I'm in. It's very hard for someone to understand if they haven't been through it.

I can't count how many times people have said to me "Why are you on Medicare? That's for the elderly!" Even my own grandmother has said this to me numerous times. It's frustrating, that they don't understand that I need every bit of help that I can get. I've been trying to get on Medicaid to get reimbursements for the $99 that Medicare takes out of my SSI checks every month, but I keep getting sent not only the wrong forms; but forms that I can't read because the print is too small and I'm legally blind. I've been trying for almost 2 years now just to get through to Medicaid.

Many of the conditions I have; doctors have not dealt with before. It's hard to describe to them a condition when they are only half-listening, and have their own ideas on it. Throughout my teens, I was misdiagnosed and put on many medications and even put into hospitals against my own will because the doctors didn't understand my case. At each hospital, every day I was asked by a different attending "Why are you here?", and I would say "I don't know." I remember once my mother packing my bags and trying to get me out of there, but my doctor refused to release me. I cried myself to sleep every night.

Those mental wounds still have not healed, and probably never will. I still have nightmares about it, over 10 years later.

Sometimes, it's best to not even bring it up than waste words and time trying to describe a circumstance and have others understanad.

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