update

Hi all,

Thought I would just poke my head in and say hi to everyone & give you all an update as to what is going on with me, as it's been a while.

I am home from grad school for the summer. Been working like crazy up until now, plus my sister is getting married at the end of the summer, and I am the maid of honor, so I have a lot of responsibilities associated with that as well. My computer died a few weeks ago (thankfully after exams), and unfortunately it was essentially not repairable. So I was without a computer for several weeks, until I went out and bought a new one.

Pain is still not great, but what else is new. I see the neurosurgeon next week, and also meet with one, if not both, of my Medtronics reps to reprogram my neurostimulator. I think that I have gotten used to the sensation of the stimulation over time, and it is now significantly less effective in reducing the pain than it once was. We actually haven't really played around with any of the programs since I had the stim implanted 3 yrs ago, so I'm probably past due for some tweaking anyway. Vision stinks too, but again, there isn't anything more that we can do at the moment.

I've also been dealing with some serious and concerning gynecological problems for the past 4-5 mo (I'll spare you all the details, guys). I just recently switched obgyn doctors, because I was not happy with mine (both in regards to her skills/knowledge as a physician, and the way in which she treated me). Fortunately, I was able to get a referral elsewhere, and I like & trust my new doc. He is starting me on a new medication, but if the problem persists over the next couple of months, I will likely have to have a special uterine ultrasound and biopsy done. Neither of those things sound pleasant to me, so fingers crossed that the problem resolves.

Fatigue is still also a major issue for me, and I've really been struggling. I thought that I was going to have to put off my exams in May, because at the time, I was having difficulty just walking from one room to the next without feeling like I was going to pass out. The fatigue isn't quite that extreme anymore, but it is still bad enough that I am having a really hard time functioning, and it is seriously affecting my quality of life. If I'm not at work, I'm pretty much in bed. I really hate doing that, but it just feels like my body is shutting down, and no matter how hard I fight it, there is nothing that I can do to stop it. Of course, like all the rest of my medical problems, no one can figure out what is wrong, or how to fix it. Even stimulants don't help. It is incredibly frustrating! I am no stranger to chronic severe (and at times utterly debilitating) fatigue, but these past few months have been particularly rough for me. It scares me, because I can't keep going this way once I'm back in school -- not long term, anyway. I wonder if this increase in fatigue is related to the gyn problems that I have been having, as they started around the same time, but the gyn doc thinks that it is unlikely.

I was supposed to be seeing a holistic doc about potential vitamin infusions this summer, but apparently his office goofed when they scheduled my appointment (months ago), and so they canceled it last minute. Now the doc does not have any openings until a week or so before I head back to school. So I don't even know if it is worth pursuing anymore. I'm really annoyed because I made this appointment back in May, and they didn't pick up on their mistake until a few days prior to the scheduled appointment (which was supposed to be today). They screwed up, I didn't. And they had months to fix the problem, but again, did not. I think that the proper thing to do would be to find some time to squeeze me into the schedule asap, but they won't...

Another stress has been dealing with one of my dogs. At the end of May, she suddenly started having seizures, and it's been somewhat of a rough road to get them under control. We don't know why she has them, or what sets her off, and we likely will not ever know. We finally got her stabilized, and she had been doing really well for about 3 wks, but she woke me up at 4:45 am this morning because she was having another seizure. At this point there really isn't anything more that we can do, (unless her seizure become more frequent) but I hate feeling so helpless.

Anyways, that is it in a nutshell. Sorry for the length of this. Hope everyone is doing well! I look forward to catching up with everyone during my time off!

Skeye

Post Edited (skeye) : 7/2/2013 9:42:45 PM (GMT-6)

My MILs cat used to have seizures. We found out it was the rattling of things like plastic bags or envelops. I hope you find answers.

Skeye,
Its so very good to see you! So very sorry about everything your going thru and I hope your neuro appointments go well and that your stim gets reprograms to better help you...Many blessings to you and do try to keep us posted over the Summer.
Prayers and well wishes...

Thanks for all the words of welcome, everyone! I appreciate it! I've certainly missed the support, kindness, and warmth that emanates from this forum and it's wonderful members! It's nice to see some familiar faces, as well as new ones!

skeye

Sorry to hear about your doggy....My yellow lab is 9 and a half years old and started having seizures out of the blue at around 3 and a half years old.

I was renting a room in a house as I was getting a divorce and lived upstairs...The first time it happened he was looking out the window and saw some other doggies in the neighbors yard..All of a sudden his back legs started wobbling and shaking then his entire back half...

Unfortunately the bedroom door was open and he went to go run down the stairs real quick to try and see the other doggies and this all happened so fast I barely had time to think and couldn't grab him.

So he flew down the stairs with his whole body weight and no paws on the steps and hit head first into the drywall. He is 72 pounds so it put his head through the drywall!!! I thought he was dead!!! I was screaming and crying and had to call a neighbor to help me grab him and get him into the car to the emergency vet....It was the scariest thing!!

Thankfully they did tests and his head is hard and solid as a rock it didn't do any damage to him and the seizures stopped by the time we got there. They also couldn't find any reasons for the seizures.....

We also decided that we wouldn't start him on long term medication unless they kept happening and more frequently. They just gave me valium suppositories to use if it lasted more than a minute. He had 3 more seizures within the next year and then absolutely NONE since then!!!

It was so strange to never know the reason why....but I am SO thankful they just went away!! I hope that there is nothing seriously wrong with your doggy and wanted to share this story so that you could maybe have some hope that it's just a fluke thing as well.

I was thinking that you worked in a Vet clinic as well as finishing school....It's such a shame that you don't know any Vets to get some of those tests at a discount or even for free:(

Hopefully you won't even need them and your pup gets better asap...

Sending hugs (( ))

SB,

I'm glad that your dog was okay, and continues to do well. Yes, seizures in animals can be very scary. For whatever reason, most seizures that we see in dogs and cats are of the grand mal type. If you don't know what is happening it is absolutely horrifying, and there is nothing that you can do to stop them. It's even hard for me with my own dog, despite her seizures being far from the first experience that I've had with seizures in a dog or cat (this time it's just my dog, you know?!). I do have diazepam on hand for her as well, but so far have not had to use it. Her seizures generally last 1 1/2 - 2 min, and the diazepam really should only be given for a prolonged seizure (once you hit the 10 min mark). We initially thought that we were going to have to hospitalize her for IV diazepam and phenobarbital for a few days, because she had 4 seizures within 36 hrs. But fortunately, they stopped. We did start her on phenobarbital after that, and she has only had 2 seizures since. One was about 2 wks after her first episode, and the other was this week, around 3 wks after the previous one.

And I do work for a veterinary clinic when I am not in school (I am about to start my 2nd year of veterinary school). I've worked as a technician in a mixed practice (we do about 60% small animal work -- cats, dogs, wildlife, and the occasional pocket pet, and chickens -- and 40% large animal work -- cows, horses, goats, sheep, pigs, etc) for the last 10 yrs -- part time while going to high school and college & full time during the year I took off between college and vet school, as well as the year long medical leave I recently took from vet school, and when I am home for the summer, etc. I get everything at cost at the clinic that I work for (medication, supplies, etc), I get laboratory work for 50% of cost, and I don't pay for services (exams, surgery). The vet that owns the practice is like a father to me, and the other docs are all really close friends and amazing mentors.

When I am up at school, I can still get medications at cost from work (they just have to mail them to me, because my school is located 5 hrs away). However, I don't have the rest of the luxuries that I do at home at school. I really can't complain, as I still do get a 30% discount on all services, laboratory work, and medication, but it being a state of the art teaching & specialty hospital, and me being a poor grad student, it is still quite expensive. I spent $800 on this dog this past winter for veterinary work up at school. Getting a neuro consult and MRI up there will likely run me another $600 - $1000, and at the moment I don't even have enough money to pay for tuition or books for next semester (even with the ridiculous amount of student loans that I've taken out). Unfortunately, those services aren't going to be cheap anywhere. There are only a few hospitals in my area back home that have advanced imaging technology, and if I were to use them, I'd likely be out another $500 for lack of a discount. I'd do anything for my dogs, but right now she is stabilized well enough that there is no rush to bring her for a more extensive work-up & I can't afford to do it just for curiosity's sake. As I mentioned previously, I kind of doubt that we'd find anything of any interest/that we could correct. The vast majority of k9 epilepsy is idiopathic, and it does run in her breed.

Skeye

Post Edited (skeye) : 7/5/2013 10:25:12 PM (GMT-6)

Hi Skeye,

I am so sorry to hear about all you have going on. You've been so kind to mW while I'm dealing with things with Maximus and I don't have any information I can even suggest that would be as valuable as you've been to me. I just want you to know that I am eternally grateful for you sharing your wisdom and answering my questions and I'll keep your pup (and you) in my good thoughtsihope tthe seizures disappear as quickly as she started having them.

And I really want to thank you for being so supportive to me while you have so Mich going on. Sending some positive energy your way.

Linds

Thanks, Lexi!

Haha, that could be true! You never know ;-)

I was able to find coverage for work on the 25th, when I am now supposed to see the holistic/integrative medicine doc. So I guess I am going to go. It will be interested to hear what he has to say, anyway, even if there won't be much time for treatment. All my other problems aside, this fatigue thing has just got to stop. I can't live this way and still be functional. Maybe this doc knows someone up in the area where I go to school, and if he thinks that vitamin infusions (or anything else) might help, I can get it done up there. He is supposed to be one of the pioneering docs in this field, and he is associated with a well-respected large teaching hospital, so hopefully he has some good connections.

Besides there not being much time left between when I see that doc and when I go back to school, and losing money because of having to take time off from work, I think that part of my reluctance to go is out of fear. I've been through so much these past 7 yrs, and every time I get my hopes up, I crash real hard when I get let down. I try not to get my hopes up for anything anymore (not that I am trying to be pessimistic, I'm just trying to be "open-minded" with a "whatever happens, happens" attitude), but even so, it really hurts emotionally when I get told once again that they can't do anything for me, or I try a treatment and it doesn't work. It generally takes me days to recover after each failed doctor's appointment, procedure, or treatment. The emotional side of things in itself is extremely draining.

Skeye

Hey Retired Mom, we miss you...
Sorry Skeye had to say that!
Prayers for you both and many well wishes...Now Skeye keep us posted on your neuro appointment...

Hey Skeye, I don't know how I missed your update but sure was glad to see one from you. Wow, you have gone three years without having to tweak your unit, that is something. I do hope when you see the techs that they can do some fine tuning and get you back up to speed with it working very well for you. I hope you have a good appt with the neuro, please let us know.

Anyway, I am getting ready to go run some errands but wanted to pop on and say hello and how good it is to hear from you. Take care......Susie