My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling With Psychotic Features ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Daily Headache ~ High Cholesterol

Monday, March 28, 2011

My trip to St. Louis to see Dr. W

Wow, I've got a lot to write about.  First of all, I did get to see Dr. W in St. Louis about my EDS.  Yay!  She is an amazing doctor.  She doesn't follow through with adults, but she does with children.  If anyone is in the St. Louis, MO area, or willing to travel to the area as I did, and wants to know how to get in touch with Dr. W send me an email by using the Contact Me tab.

At the clinic I saw both Dr. W and a genetic counselor, which I didn't get to see last time I saw a geneticist.  I had about an hour of face time with them.  She was very helpful and from my symptoms diagnosed me with POTS, as well as giving me the official diagnosis of Ehlers-Danlos Syndrome Hypermobility Type.  I told her that I was in physical therapy and they only okayed me for one month.  She wanted me to have four more months after that month, for a total of five months straight in PT.  I gave my therapist the script from Dr. W but she said she didn't think Medicare would okay it.  She said Medicaid doesn't even pay for physical therapy in this state.  I'm so very lucky to be able to have PT at all.  I've been doing really good with my PT homework so that I can make the most of this time.  My goal is by this summer to be able to walk in the park, even if it is with my walker.  Yes, I got a snazzy new red walker, but more about that later.  Medicare did okay me to have one extra month of PT, for a total of two months, though.  I am really excited about being able to get an extra month.  I also am getting Oval 8 splints for my fingers.  I will have to pay for these out of pocket.  I am also supposed to get wrist braces that will keep my knuckles from dislocating, which will be very nice.

I got the letter from Dr. W in the mail today detailing her notes from the appointment.  I hope I signed for her to send it to my rheumy who is still in denial about me having EDS.  If not I'll have them send it.

I've been having problems lately with running out of meds and then going into a flare for a day or two.  Dr. A, my neuro, wants to see me before he refills my Lamictal, a seizure med, again.  I don't know if I'll have to do another EEG again or not.  I think I should probably take this opportunity to ask Dr. A about scanning for Chiari.  The thing is, I don't see Dr. A as a very competent medical professional.  For instance, after he diagnosed me with a possible TIA (mini-stroke) he sent me on my merry way with advice to take a baby aspirin every day.  I've been taking aspirin everyday and I've been taking fish oil, which lowers cholesterol.  My cholesterol levels were borderline last they were checked, but as healthy as I've been eating lately they are probably much lower, especially combined with fish oil.

Okay, as for the promised news about my walker, I got one called the Rollator.  It has four wheels, brakes, and a seat so I can sit down when I can't walk anymore.  I love, love, love my new walker!  I'm going to end this post with warm fuzzies of my sweet new walker.  ;-)

Seat up

Seat down...let's relax!

Wednesday, March 2, 2011

Wow, I didn't know going outside was the cure to EDS!

I was a bit frustrated yesterday.  My home health aide, which is also my friend, told me that all I need is to get fresh air.  This is directly after I told her about how my pain, dislocations, and seizures have been doing lately.  She also suggested I just go bowling because it would make me feel better to get out of the house.  When I told DH about it later he was flabbergasted.  I tried explaining to her that people with EDS should not go bowling, but she wouldn't listen.  When I was talking with DH later he laughed and said I'd dislocate my "shoulder, fingers, wrist, elbow, and possibly something else" if I went bowling.  Obviously she really doesn't understand what EDS is!

Tuesday, March 1, 2011

Caught between a rock and a hard place

I guess I should reword that blog title to "caught between slight pain relief and increased seizures."  As you can tell, that line isn't as catchy as the title I decided to go with.  I am on a non-narcotic prescription pain reliever than does very little for pain relief, but it does do some.  Unfortunately people with epilepsy are absolutely not supposed to have this medication.  Not good.  When I was on Lyrica, which is also an anti-convulsant, my seizures dropped down to one every month or two.
Now that I am off of Lyrica my seizures are returning.  I've had three seizures in two weeks.  Last night was the first time I dislocated anything in a seizure.  I dislocated my toe, even though I was wearing tennis shoes.  I didn't have DH put it back until one o'clock in the morning when I woke him to put it back in.  I fell asleep after my seizure and then when I got up DH had a seizure, or two, or three.  So I'd actually forgotten my toe was dislocated until it started hurting really bad.  Before then my pain levels were so high from post-seizure pain that I couldn't pick out that it was my dislocated toe hurting, I just felt all of me hurting.

I woke up this morning in the best of moods, but I was also in a lot of pain in my hips.  I took a nap because DH and I got up so early and I was up really late reading.  I was reading Maiden, Mother, Crone last night and a Kay Scarpetta novel mind just went blank.  When I woke up from my nap my home health aide was here and had actually been here for about two hours.  I was surprised.  DH had just let me sleep.

So, to finish the story I started on, the only medication my doctor will give me is this medicine I'm on now.  She won't give me anything stronger or anything made different so that it won't cause my seizures to increase. So, of course, I'm pretty frustrated right now.

I also wanted to mention today is my Grandpa Virgil Hugh Gipson's birthday, March 1, 1936 - May 16th, 2008.  I still can't believe you're gone, Grandpa.


Related Posts Plugin for WordPress, Blogger...