As in "As if anybody ever even reads this".... whatever. I'm here, writing, blogging, so what. I'll just talk to myself, I've never really understand how people could actually, verbally talk to themselves, it's sorta weird. Creepy. Hhhmm. Anyway, I wanted to post some info and thoughts on here, I don't know, just so they don't get filed in the wrong spot in my brain and then I forget them. Ooh, which reminds me of that Stephen King movie, The DreamCatcher, how he has a whole library filled with files and book shelves of memories and thoughts inside his head. Interesting interpretation.
Anyway... okay, so everyone knows that my feet hurt all the time, and it's even so polite of people to ask me all the time how they are doing, if they are feeling better and what not. I think what people don't realize is my feet aren't going to get better. I'm pretty sure this is how they are going to be forever, and I can figure out a way to deal with them. It's been such a rollercoaster for me, and I really don't like it. I was never one for the dramatic excitement of roller coasters. I've been dealing with these foot problems for nearly 2 years, since approximately the time that Austin was born. I can't remember if it started before he was born or after. I remember that my feet were killing me before he was born, but I think it's easily confused with late pregnancy, so how would you know? But I remember a very specific time that our home teacher and his wife came over to visit just before we were scheduled to deliver and I had been making muffin batter to freeze; like 4 or more batches of muffins, and my feet were KILLING me, so I was sitting at the table amidst messes and messes of muffins, batter, ingredients, etc. That's the only time that I remember my feet incapacitating me before I had our 4th baby.
So, after much trial, tribulation, and a many doctor visits, wrong diagnosis, many medications, several weeks of physical therapy, weird chiropractic treatments with lingering athletic tape on my legs, stretches, exercise, ice, shoes, supports, pads, shots, steroids.... you name it, I've tried it. It's recently occurred to me that now after all these treatments I can tell the difference between two different medical conditions I have. I definitely have Plantar fasciitis, so when people see me limping around, it's because my left heel is killing me, and I think I'd rather die then stand on it. The other condition has remained a mystery, but I think I am near solving it. After my podiatrist recently suggested the next step is to have surgery in each foot and to clip part of the tendon and arch, I decided I should keep digging on the internet. Now I know that surgery is still probably in my future, but there's something else wrong with me. I found a condition called Erythermalgia, and I found a fabulous explanation of it as well.
Erythromelalgia is a rare syndrome in which arterioles of the skin dilate periodically, causing a burning pain, making the skin feel hot, and making the feet and, less often, the hands turn red. Usually, the cause of erythromelalgia is unknown. In such cases, the disorder tends to start when people are in their 20s or older. A rare hereditary form of erythromelalgia starts at birth or during childhood. Less commonly, the disorder is related to the use of some drugs, such as nifedipine Some Trade Names PROCARDIA (an antihypertensive) or bromocriptine Some Trade Names PARLODEL (a drug used to treat Parkinson's disease). It also occurs in people who have certain blood disorders (myeloproliferative disorders), high blood pressure, venous insufficiency, diabetes mellitus, systemic lupus erythematosus (lupus), rheumatoid arthritis, lichen sclerosus, gout, spinal cord disorders, or multiple sclerosis. Erythromelalgia usually develops 2 to 3 years before the underlying disorder is diagnosed. Symptoms include burning pain in the feet or hands, which feel hot and appear red. Attacks are usually triggered by environmental temperatures of over 84° F (over about 29° C). Symptoms may remain mild for years or may progress and become completely incapacitating. Diagnosis is based on the symptoms and the increase in skin temperature. Tests, such as blood cell counts, are usually done to help identify a cause. Treatment includes resting, elevating the legs or arms, and applying cold packs to the legs or arms or immersing them in cold water. These measures sometimes relieve symptoms or prevent attacks. If no underlying disorder is identified, aspirin Some Trade Names BAYER or gabapentin Some Trade Names NEURONTIN may relieve symptoms. However, aspirin Some Trade Names BAYER does not relieve symptoms for the form that starts at birth or during childhood. If an underlying disorder is identified, treating that disorder may relieve symptoms
So after I found this great new information, I wanted to rush in to the neurologist and present my findings and see if I got it right! I was able to schedule an appointment with a doctor in town that has gotten fabulous online ratings, I was so excited to get a second opinion. Except I needed to take my 2 kids with me, but that was no big deal, it was jsut going to be a consultation. But then my other two kids stayed home from school sick, but I thought that was okay too, they are the nicer ones. So I took them all. I mean, I had very well taken them all with me, to the same practice a year prior when I happened to see one of the other doctors there. So we went, and then after going into the patient room and having my vitals checked, and waiting that awful 10 minutes before the Dr. arrives... the nurse returns to tell me that the doctor is unable to see me, and I will need to reschedule for a time that I have more suitable child care. I was crushed. Livid. Wanted to cry. Wanted to scream. What did I do instead? I smiled, a bit confused, but smiled and said okay, I guess?
I called today to reschedule that appointment and the woman whom I spoke with Refused to schedule it for me, saying that I wasn't allowed to switch doctors within the practice. Man, that line jsut REALLY gets to me, I've heard it from other practices before and I can't stand it!! Anyway, I wasn't happy, then she got a little snippy at me, and then when I got off the phone I cried. Ya, it's true, I cried. Man, I am so beyond tired of chasing a diagnosis, it is exhausting. It's this big dramatic cycle that turns into a cry-fest when I finally break because I'm so frustrated with it all.
So, in the end, here I am, no appointment scheduled, convinced I have some unearthly heard of disease that there is no cure for, and I still somehow find a little comfort in knowing that there are some therapies I could try but am baffled at why the DOCTORS --you know, those people that wear white lad coats, that go to school forever, that are supposed to be smart and make lots of money and fix people-- why don't they know what's wrong with me? Why do I even have to exhaust Google's search efforts. He's getting tired of searching how many different ways you can write a question using the word Erythermalgia. Ya people, it's long, and weird looking. But I'm convinced that's what I've got, and until somebody can diagnose me as any different, I guess I shall start self medicating.
** If any person has actually made it this far in the reading, you must ber very interested in my condition, or intrigued with my feet, or just find what I have to say awe-inspring... cuz seriously, I doubt I'LL even re-read this, it's probably boring as all get out. Oh ya, so do you think I can sue the doctor for discriminating against me because I was a mom?
4 comments:
You make me laugh. Its great to learn what runs through your head.
It sounds SO frustrating about your feet. I have had pain in my feet before and I understand how painful it can be. Luckily mine was temporary.
My mom has been struggling for years with severe pain in her lower back which would cause her legs to severely ache. It was and is very painful. She has had the awesome journey of trying to find a doctor that cares enough to give her the time she needs. Some have been helpful but nor enough.
It looks like it is related to part of her thyroid going crazy. (Causing the other parts of the thyroid to shut down which and the body is leaching calcium from the bones which could be causing or attributing to the leg/back pain) She will know soon if it is that. She found a doctor (he does complimentary medicine) that spent over 2 hours with her to find out her whole history and really listened. Of coarse he is not a dr that most insurances cover but he caught some very subtle symptoms that other drs overlooked.
I find it interesting that a lot of physical issues also have an emotional component to them. So sometimes there are reasons that you'd never think were connected to it that attribute to the pain/issue.
Surgery usually has side effect so make sure you exhaust all other options.
You will (hopefully :-) ) learn from this experience. I hope you don't have to live with it forever. There is an answer out there.
I don't know if you are more of a mainstream or alternative medicine mindset. Search both.
GOOD LUCK! Post if you find any thing cool out.
I have always brought my kids to the dr office with me and I have NEVER had them tell me I couldn't bring them. That is messed up.
-Leslie
Um- hello?! I check your blog almost daily still silly!!
I am so sorry - I am near tears reading your frustration, even though you told me about this a long time ago.
I still think you should issue some kind of formal complaint against the office - people have kids, and child care is not always an option when you have appointments!
I am totally interested in what is going on with your feet. I can understand the frustration that comes from a physical impairment that does not seem to have an answer, and inhibits your ability to do the simplest of motions...walking. I am so sorry that you are having to go through this and I hope you can find answers soon. Yet if the answers don't come, I hope that you can find peace in your "new" situation and that it doesn't cause you frustration any longer. Definitely keep us all updated on this issue. I really want to know how it turns out. And the doctor that told you to make a new appointment because you didn't have sufficient childcare? It makes me so mad that they would be so rude and I want to find out who it is that you went to and send them a strongly worded letter!! :) Just remember you are paying the doctors. It is a service they provide and if you aren't getting good service then you should definitely go somewhere else. Just goes to show that not everyone who gets high rates is great. We'll be praying for you, Ashley!
Ashley, I am 72 weeks pregnant, so this made me feel like bawling, too. Seriously. I'm still on the verge.
I had just ONE MONTH of arthritic horribleness in my feet/legs this fall, and it about killed my spirit. I cannot begin to imagine TWO YEARS, and the feeling it'll be there forever.
So. To add your experience with the AWFUL doctor's office and their heartlessness and rudeness, I am livid FOR you, heartbroken for you, and sick about it.
I am so sorry. I am so so so so completely sorry. And I would TOTALLY babysit if I didn't live here in Missouri.
Prayers being sent your way, lady. :(
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