I am overdue for an update on my Moffitt appointment(s). Sorry for not updating sooner. I've even gotten e-mail asking for an update(SORRY!) I am SO SO SO THRILLED with the entire experience so far. Everyone there is so wonderful & caring! Such a change from some of the doctors I've dealt with. My first appointment actually began disasterously. We left home on time, but being a 2hr drive, you never know what you're going to encounter. We hit MAJOR road construction back-ups and I think, a traffic accident...We ended up being over an hour late for my appointment. I was MEGA stressed, as I was getting out of the van I spilled an ENTIRE mug of ice water on myself. I spent the entire drive there fighting with the website trying to get my new patient questionairre filled out because I'd had problems with their server. I didn't get it done before the appointment...Needless to say, I was STRESSED...I got in, knew I wasn't going to get to SEE the doctor, but I hoped that I could at least get my paperwork done, meet with the nurse and get into the system to re-schedule my appointment. This is not what happened...The receptionist ran down the hall and caught the doctor just as he was walking out the door and asked him to talk with me before he left. She left the paperwork for after I talked with him, gave me my wrist band and brought me back to a room with the nurse. As stressed as I was, I was immediately relieved. Dr T. took time out to talk to me about the history of my Thyroid nodules, what tests I've had done and what tests were most likely immediately needed. He did an exam of my Thyroid and reassured me that we'd get things started right away. I gave him the copies of all my records that I had made for him & he ordered all the tests to get started. He wanted to see me back in a week! I've never had a doctor want to see me back that soon. I know he had somewhere he was supposed to be, he made HIMSELF late for an appointment to see ME...It took a whole lot of stress off...After the very brief meeting with him, I had to run to the lab & get bloodwork before they closed & then come back to the clinic and fill out all my paperwork. The wonderful staff in the clinic had me do the paperwork LAST so that I could finish everything else that needed to be done that day. They scheduled my Thyroid ultrasound for just a couple days later. I had that done and had the followup appointment on the 10th. My follow-up appointment was as wonderful an experience as my initial experience. Not surprising, the nodule on the right side has been followed all along has gotten larger, but what I didn't expect is that the small nodule on the left side has gotten to a significant size as well. I'm having a Fine Needle Aspiration Biopsy on both sides this coming thurs(Nov 17th). This is the first time that the left side will be biopsied. I've been through these biopsies before, so I'm not nervous about the procedure, but I am nervous about the outcome...Also at my appointment last week I talked to Dr T about the Adrenal Dysfunction question that has gone back and forth a few times and that I've felt better when I've been on the supplements and on the Hydrocortisone when I was on it for a short time. I explained that the Endo that I was seeing last just flat out denied that it was a possibility. Dr T seemed shocked and appalled that a doc would brush off the possibility of an Adrenal problem with my symptoms. He ordered the bloodwork to be done immediately, so I had that done right after my appointment. Depending on how that initial bloodwork comes back, there is a secondary test that is done that involves an injection and waiting around for a few blood draws over a few hour time frames, but we suspect that I'll be having that test in the next week or so as well. I just have to wait for the results from the first test. Dr T's nurse also wrote me a referral to the GI clinic so that I can start seeing the GI docs there and hopefully get some more in depth testing and some ANSWERS to what's been going on. My current GI doctor has not been co-operative in finding answers, she has just wanted to treat symptoms, which is not OK with me, especially since I've been hospitalized no less than 4 times since she's been my GI doctor. Something is seriously wrong...Also this week I see my neuro-surgeon for follow-up on the x-rays I had taken about 6 weeks ago. Hope all is good with my spine and my hardware, last appointment he said there is a *chance* of some tethering of my spinal cord, but the MRI was really hard to read, there was a lot of scar tissue. This could be contributing to some of the weakness issues I've been having, but any residual effects from tethering would level out & not continue to get worse, so if that's the case, I shouldn't continue to get weaker. It does not explain the peripherial weakness I get in my wrists though. I'm optimistic that everything will be good with Dr R when I see him for my follow-up, but there is still questions about the tethering and how to tell what's going on there.
I think that covers most everything right now. Obviously, lots of appointments as of late, I'm sorry I've not updated sooner...y'all have to keep on me to do so sometimes.. :)
Nov 14, 2011
Oct 24, 2011
Home from the hospital...again and more....
Hospital Saga
The reason I went to the hospital was severe nausea, dizziness, GI pain, the worst headache I'd EVER experienced(I get migraines and I've had a headache due to a CSF leak before), I hadn't gone to the bathroom in over a week. Once I got into the ER I started vomiting as well. I had felt like I was going to for days and; every time I woke up I thought I was, however I never DID until I was actually IN the ER.
I am happy to be home from the hospital & feeling much better than I was a week ago...However I am extremely frustrated that I spent a week in the hospital(TWO hospitals actually) and only saw a GI intern at the first one once, for about 3 minutes and; NO GI DOC WHATSOEVER at the second hospital the entire time I was hospitalized. I dealt with arrogant docs that had less knowledge of the type of GI issues I have than I do and yet they refused to call in a GI consult. I was at the first hospital, where MY GI doctor is based, for 3.5 days and from the time I entered the emergency room until the time I left AMA (due to numerous issues including being denied any pain medication for 10+hrs). EVERY TIME I spoke to a doc and every shift change I asked if MY GI had been requested yet since my family had already been in contact with my doc & she was aware that I was in the hospital, however protocol is that she has to be requested for consult even though she IS my doc and she IS on staff...Three and a half days and my doc never showed, never was requested, I never got to see her...GI testing didn't get done in a timely manner. After a number of issues, including the attending doc deciding that the most awful headache I've ever experienced, that lasted for six days was due to the "narcotic pain meds" that I was on. The headache came on after the evil evil nausea. I know the rounds of nausea, they are getting all too familiar, I knew a couple days before it got bad that I was "getting sick" I told my mom about a day before that I thought I was...I'm learning my body's signals...but this headache that came along was hellish...I've had migraines before, I even had one from a cerebral spinal fluid leak...this was worse, WAY worse...and that's saying a LOT! The spinal leak one lasted a lot longer, but it wasn't as intense and it was more describable. D*MN, they did an EEG with that one! This headache caused a lot of drama with the doctors...UGH...Nothing like a headache CAUSING a headache. LOL... ANYWAY, after the attending doc refused to give me pain meds for 10hrs, I left the first hospital. I headed to the hospital where my pain management doc has privileges and could come see me if necessary...If nothing else, SHE could oversee the pain management portion of my treatment while the docs were taking care of my GI issues...OR.SO.I.THOUGHT. My parents, my wonderful wonderful parents(I would be lost without my family!!!!) drove me nearly 2 hours from one hospital to the other. Initially, the second hospital was an improvement over the first, I didn't have a 3hour wait in the emergency room. The emergency room experience was great(as usual) and I was admitted quickly. My pancreatic enzymes were still through the roof. However once admitted things changed. To begin with, the attitude of the attending doctors towards me was astounding. The attending actually SAID that my spinal cord wasn't damaged!!! OMG! I should have asked at that point for a different doctor. I keep forgetting that I have the right to request a different doctor/team of doctors. Any doctor that does not comprehend that a spinal cord injury at L1 does not involve the spinal nerves should not be practicing...PERIOD...His assistant whom I dealt with more than I did him actually flat out LIED about speaking to my pain management doctor and things that were/were not said...Little did he know the type of doctor my pain management doc is. She actually CALLED ME in my hospital room and totally blew apart his lies(I <3 Dr Harper! She is AWESOME!). When he was standing there telling us that he had talked to her and that she told him all about treating my GI problems and that she didn't come to that hospital we knew he was lying because she doesn't treat my GI problems and she DOES come to that hospital(Her partner is part of the rehab team right down the hall from my room)...He had to have talked to my GI doctor as well, but he tuned out anything other than I've had and have appointments scheduled with a number of other specialists...They didn't want to do ANYTHING once they knew that I had multiple issues going on. They refused to even call in a GI referral for my CURRENT complaint, even though my pancreatic enzymes were high, I was throwing up, nauseaus and in extreme pain. The attending was going to discharge me when I had still not had anything to eat.PERIOD. I had not been able to keep anything down except water and he was going to discharge me. I had to file an appeal with my Medicare insurance plan. This gave me an additional 3 days to get IV anti-nausea meds, fluids, etc & let my GI tract rest. Unfortunately, due to the fact that the hospital did NOT do any diagnostic tests prior to writing up the initial discharge orders(and only one VERY VERY flawed GI test afterwards) Medicare agreed with the discharge after 3 days....Those 3 days DID give me the time to recover a bit...There was one student doc that was really awesome and she spent a ton of time with me each day getting lots of history, exactly what was going on/how I was feeling, and sharing information on the tests that I'd be having that day. Unfortunately she didn't have any pull on the team as she was "just" a student and the attending docs were convinced that there was nothing that they could do. I SO wish that she had more clout because then I may have actually been treated
Porphyria
The one test they did that I'm waiting on results for is for a very rare group of metabolic disorders called Porphyrias. I was shocked when they did this test because I was already made aware of this group of disorders by a good friend of mine just recently & was going to be asking one of my docs(Had to figure out who it fell under) to do the test for these disorders, but had not had an opportunity. If this comes back positive, it gives me SO MANY more resources and answers. It explains SO MUCH and there are actually treatments that will help it. No matter what, I have to keep an eye on my dietary intake. It seems that food is a trigger...always a trigger...
Lactose Intolerance
Last month when my sis was in the hospital I spoke with the nutritionist and she suggested that I might ALSO be lactose intolerant. I am beginning to try to alter my diet accordingly and drink lactose free milk. I live in the world's smallest town so I don't know how easy it'll be to find lactose free cheeses and other foods. This is just the beginning and I know it'll be TOUGH as I LOVE my cheese, however if it makes a difference and reduces the problems I have, I know I need to do it. Lactaid milk and less cheese is step 1. Less cheese is TOUGH as I eat cheese flavored EVERYTHING...Even tonight, as I picked up a carton of Lactaid Milk, I bought a white cheddar flavored snack...knowing I might not be able to eat it after the first few bites, but it sounded yummy & I wanted to try it!
Nonetheless, it's good to be home. I have a plan to try to get answers and to get my records so I can get the results of the tests that they DID do...I'm feeling a bit better and determined to get ANSWERS...
Upcoming Appointment
Unrelated to this past hospitalization, I have an appointment on Tues with the Moffett Cancer Center for my Thyroid nodule. I'm excited and nervous at the same time. When I had a spinal MRI last month it showed my thyroid nodule and the size had grown from somewhere about 2.5cm to 3.7cm in the past yr and a half...I'm going in totally expecting to have to go through the ENTIRE cycle of testing again, which I actually hope. I really want to start with a clean slate, get a totally fresh opinion on it. I want to have it completely re-evaluated. I have not had the entire gamut of tests done since it was initially discovered, I've only had the annual ultrasounds and a couple of follow-up biopsies due to growth. I'm totally ready to be told that my Thyroid is going to have to be taken out...However I'm not 100% sure what I'll need to do if that happens, besides take hormones for the rest of my life.
I will do my best to update after Tuesday's appointment...I'm trying to be better about updating this blog. Please feel free to remind me to update here :)
The reason I went to the hospital was severe nausea, dizziness, GI pain, the worst headache I'd EVER experienced(I get migraines and I've had a headache due to a CSF leak before), I hadn't gone to the bathroom in over a week. Once I got into the ER I started vomiting as well. I had felt like I was going to for days and; every time I woke up I thought I was, however I never DID until I was actually IN the ER.
I am happy to be home from the hospital & feeling much better than I was a week ago...However I am extremely frustrated that I spent a week in the hospital(TWO hospitals actually) and only saw a GI intern at the first one once, for about 3 minutes and; NO GI DOC WHATSOEVER at the second hospital the entire time I was hospitalized. I dealt with arrogant docs that had less knowledge of the type of GI issues I have than I do and yet they refused to call in a GI consult. I was at the first hospital, where MY GI doctor is based, for 3.5 days and from the time I entered the emergency room until the time I left AMA (due to numerous issues including being denied any pain medication for 10+hrs). EVERY TIME I spoke to a doc and every shift change I asked if MY GI had been requested yet since my family had already been in contact with my doc & she was aware that I was in the hospital, however protocol is that she has to be requested for consult even though she IS my doc and she IS on staff...Three and a half days and my doc never showed, never was requested, I never got to see her...GI testing didn't get done in a timely manner. After a number of issues, including the attending doc deciding that the most awful headache I've ever experienced, that lasted for six days was due to the "narcotic pain meds" that I was on. The headache came on after the evil evil nausea. I know the rounds of nausea, they are getting all too familiar, I knew a couple days before it got bad that I was "getting sick" I told my mom about a day before that I thought I was...I'm learning my body's signals...but this headache that came along was hellish...I've had migraines before, I even had one from a cerebral spinal fluid leak...this was worse, WAY worse...and that's saying a LOT! The spinal leak one lasted a lot longer, but it wasn't as intense and it was more describable. D*MN, they did an EEG with that one! This headache caused a lot of drama with the doctors...UGH...Nothing like a headache CAUSING a headache. LOL... ANYWAY, after the attending doc refused to give me pain meds for 10hrs, I left the first hospital. I headed to the hospital where my pain management doc has privileges and could come see me if necessary...If nothing else, SHE could oversee the pain management portion of my treatment while the docs were taking care of my GI issues...OR.SO.I.THOUGHT. My parents, my wonderful wonderful parents(I would be lost without my family!!!!) drove me nearly 2 hours from one hospital to the other. Initially, the second hospital was an improvement over the first, I didn't have a 3hour wait in the emergency room. The emergency room experience was great(as usual) and I was admitted quickly. My pancreatic enzymes were still through the roof. However once admitted things changed. To begin with, the attitude of the attending doctors towards me was astounding. The attending actually SAID that my spinal cord wasn't damaged!!! OMG! I should have asked at that point for a different doctor. I keep forgetting that I have the right to request a different doctor/team of doctors. Any doctor that does not comprehend that a spinal cord injury at L1 does not involve the spinal nerves should not be practicing...PERIOD...His assistant whom I dealt with more than I did him actually flat out LIED about speaking to my pain management doctor and things that were/were not said...Little did he know the type of doctor my pain management doc is. She actually CALLED ME in my hospital room and totally blew apart his lies(I <3 Dr Harper! She is AWESOME!). When he was standing there telling us that he had talked to her and that she told him all about treating my GI problems and that she didn't come to that hospital we knew he was lying because she doesn't treat my GI problems and she DOES come to that hospital(Her partner is part of the rehab team right down the hall from my room)...He had to have talked to my GI doctor as well, but he tuned out anything other than I've had and have appointments scheduled with a number of other specialists...They didn't want to do ANYTHING once they knew that I had multiple issues going on. They refused to even call in a GI referral for my CURRENT complaint, even though my pancreatic enzymes were high, I was throwing up, nauseaus and in extreme pain. The attending was going to discharge me when I had still not had anything to eat.PERIOD. I had not been able to keep anything down except water and he was going to discharge me. I had to file an appeal with my Medicare insurance plan. This gave me an additional 3 days to get IV anti-nausea meds, fluids, etc & let my GI tract rest. Unfortunately, due to the fact that the hospital did NOT do any diagnostic tests prior to writing up the initial discharge orders(and only one VERY VERY flawed GI test afterwards) Medicare agreed with the discharge after 3 days....Those 3 days DID give me the time to recover a bit...There was one student doc that was really awesome and she spent a ton of time with me each day getting lots of history, exactly what was going on/how I was feeling, and sharing information on the tests that I'd be having that day. Unfortunately she didn't have any pull on the team as she was "just" a student and the attending docs were convinced that there was nothing that they could do. I SO wish that she had more clout because then I may have actually been treated
Porphyria
The one test they did that I'm waiting on results for is for a very rare group of metabolic disorders called Porphyrias. I was shocked when they did this test because I was already made aware of this group of disorders by a good friend of mine just recently & was going to be asking one of my docs(Had to figure out who it fell under) to do the test for these disorders, but had not had an opportunity. If this comes back positive, it gives me SO MANY more resources and answers. It explains SO MUCH and there are actually treatments that will help it. No matter what, I have to keep an eye on my dietary intake. It seems that food is a trigger...always a trigger...
Lactose Intolerance
Last month when my sis was in the hospital I spoke with the nutritionist and she suggested that I might ALSO be lactose intolerant. I am beginning to try to alter my diet accordingly and drink lactose free milk. I live in the world's smallest town so I don't know how easy it'll be to find lactose free cheeses and other foods. This is just the beginning and I know it'll be TOUGH as I LOVE my cheese, however if it makes a difference and reduces the problems I have, I know I need to do it. Lactaid milk and less cheese is step 1. Less cheese is TOUGH as I eat cheese flavored EVERYTHING...Even tonight, as I picked up a carton of Lactaid Milk, I bought a white cheddar flavored snack...knowing I might not be able to eat it after the first few bites, but it sounded yummy & I wanted to try it!
Nonetheless, it's good to be home. I have a plan to try to get answers and to get my records so I can get the results of the tests that they DID do...I'm feeling a bit better and determined to get ANSWERS...
Upcoming Appointment
Unrelated to this past hospitalization, I have an appointment on Tues with the Moffett Cancer Center for my Thyroid nodule. I'm excited and nervous at the same time. When I had a spinal MRI last month it showed my thyroid nodule and the size had grown from somewhere about 2.5cm to 3.7cm in the past yr and a half...I'm going in totally expecting to have to go through the ENTIRE cycle of testing again, which I actually hope. I really want to start with a clean slate, get a totally fresh opinion on it. I want to have it completely re-evaluated. I have not had the entire gamut of tests done since it was initially discovered, I've only had the annual ultrasounds and a couple of follow-up biopsies due to growth. I'm totally ready to be told that my Thyroid is going to have to be taken out...However I'm not 100% sure what I'll need to do if that happens, besides take hormones for the rest of my life.
I will do my best to update after Tuesday's appointment...I'm trying to be better about updating this blog. Please feel free to remind me to update here :)
Oct 5, 2011
RIP Steve Jobs
I am saddened to learn of the death of Steve Jobs. I am WAY overdue to post in this blog. I've had many many doctor's appointments, a couple of diagnosies and even more weaknesses, loss of function & complications come up. I've got half a dozen appointments this month and Steve Jobs' death from pancreatic cancer absolutely scares me. I've got Chronic Pancreatitis & other GI issues as well as Endocrine issues. I am going to Moffett cancer center to get a THOROUGH exam of my ever growing thyroid nodules in less than 3 weeks. I am anxious to talk to a doctor that is experienced in treating potentially cancerous conditions. My most recent Spinal MRI showed my thyroid nodule & showed it to be 3.7cm. A year and a half ago these nodules were only 2.5cm. This is significant growth over a yr and a half. I'm very worried. The only decent Endocrinologist I've had over the past 6yrs told me that my thyroid needed to be removed if the nodules got to be over 3cm. Unfortunately, due to issues with the office staff not understanding billing I can not see that doctor anymore. I'm still more comfortable going to the Cancer Center anyway as these nodules were deemed as "cold" previously & that is the type of nodule that would be cancerous....With my endocrine problems and GI problems combined and knowing that the cancer that Steve Jobs had was ACTUALLY a Neuro Endocrine Tumor I am even more concerned. I need to learn more about these tumors. I am REALLY glad that I already have an appointment with the cancer center.
Aug 24, 2011
Mar 19, 2011
Crafty Stuff -The Original ScrapBox
Hey y'all,
I'm getting back into crafting, after a long hiatus...it's something I can do even when I'm not feeling great. :) and since I'm a sucker for a contest and/or freebie...AND it's National Craft Month. I figured I'd send y'all over to The Original Scrap Box's facebook page to check it out, since they're having a giveaway in honor of National Craft Month....and to plug for them to up my chances to win :) So, here's their page, go check 'em out.
Mar 6, 2011
Untitled
Who would have EVER thought jelly bracelets would come back into style??? D*MN I'm getting old
Feb 16, 2011
Walking/Rolling for a friend's daughter
In Oct my friend Emily's gave birth to a beautiful baby girl named Allyson. Unfortunately, Allyson has been diagnosed with Cystic Fibrosis. She has already proven that she's a little fighter as she had surgery when she was still only days old and she has just recovered from a battle with MRSA. In April I will be participating in the Cystic Fibrosis Foundation Great Strides walk to raise money for the cystic fibrosis foundation to use for research care and education. I will be participating on April 16th in Orlando on Team AllyBear & would love it if anyone could donate anything that they could to help. I posted a widget on the top right of my blog page, but, you can also use this link:
Thanks everyone.
'Chelle
Dec 11, 2010
Sick and Tired of being Sick and Tired!!!
In the past two weeks I've been to three doctors and an Emergency Room, I've had a complete blood workup twice & two Urine C&S tests done and the only definitve answer I've gotten to anything is that I've got a UTI and I *MIGHT* have a VitaminD Deficiency. I've gotten more questions than answers and two referrals to the University's Medical Center. The ER Dr referred me to them & when I saw the GI Dr that came HIGHLY recommended from a friend with Chrons Disease, he recommended that I go to an Academic facility where they do testing for rare diseases & disorders & where they do state of the art testing & trials. This was both comforting that he knows his limitations & didn't let his ego get in the way of proper care for me(as my previous GI did) and worrysome as I obviously have something more going on than he feels he can handle. He is testing me for C-Diff as I have been in the hospital a number of times for various things(surgeries, outpatient procedures, ER Visits & a week @ the beginning of this yr) and all my current symptoms could be caused by that...The ER dr didn't believe that C-Diff was a real threat as I hadn't had antibiotics "recently". I'm not sure what the definition of recently is though...I had them back in sept during surgery & before another surgical procedure...I guess Sept isn't "recent" enough though..Even though I've been sick for months...I'll get the C-Diff test results within the next two weeks, I see the GI dr again in about 10 days...He's trying to rule out things w/non-invasive testing while I'm waiting to get in the University's facility. I have an appointment on Monday with the Internal Medicine department @ the University medical center to get established & then I can go to all the appropriate specialists from there. There will be numerous, I'm sure...
I was looking over my FaceBook status' for this year & it was quite eye-opening. The majority of the status' I posted were about my health and exhaustion. I had A LOT of stuff going on this year, I didn't share any of it, to speak of, on Facebook, except my health trials...I guess this means that in reality, that's what's consumed the majority of this past year. It's sad to say that my online life is consumed with complaining about how crappy I feel, but I guess that's the reality of being chronically ill. I've never been this negative, and it doesn't seem natural to me, but when I'm feeling this miserble with no answers, it's difficult to be positive on a lot of things. I hope that the University Med Center will help provide those answers & help me to begin to feel better soon.
I was looking over my FaceBook status' for this year & it was quite eye-opening. The majority of the status' I posted were about my health and exhaustion. I had A LOT of stuff going on this year, I didn't share any of it, to speak of, on Facebook, except my health trials...I guess this means that in reality, that's what's consumed the majority of this past year. It's sad to say that my online life is consumed with complaining about how crappy I feel, but I guess that's the reality of being chronically ill. I've never been this negative, and it doesn't seem natural to me, but when I'm feeling this miserble with no answers, it's difficult to be positive on a lot of things. I hope that the University Med Center will help provide those answers & help me to begin to feel better soon.
Nov 24, 2010
Reflecting...7yrs
7 years ago today my life changed dramatically...in the blink of an eye. I'll write the entire story later on as it's a long one & I'm tired as I've not yet slept and it's almost 9:30am...this combo of exhaustion/insomnia is driving me crazy! Anyway, my SCI-anniversary has obviously fallen on Thanksgiving in these years & it is ALWAYS during Thanksgiving week. My family has not had a "normal" Thanksgiving in those 7yrs...We've tried but it's always something to make things crazy or hectic. This yr I'm going w/my sister & her fiance to his family's Thanksgiving celebration & our parents are going to make a small turkey to celebrate when we get home. I miss the normality of Thanksgiving that we had when I would drive 3hrs to come home for a hectic holiday and then have to go back to work the next day. Yeah, it was insanity, but it was "normal" to me. I guess this is the new "normal" but I miss the family making dinner all day long together & being silly as we're doing it. Obviously that first year, I was in the hospital so my family had their attention focused on me. A friend from school was kind enough to bring my mom a dinner plate from her family's thanksgiving dinner(one of the few things I remember from that 1st week) which was a wonderful gesture & was much appreciated, but the holiday was still not the same. It still isn't. We try to listen to "Alice's Restaurant" at noon every year still, but most years we're not even all completely up & concious by noon...I hope that we get to hear it tomorrow. Nonetheless, these are not the only things that have changed in the past seven years, I don't have enough time or energy to go through everything right now. I've seen friend get married, divorced, pass away, have babies, even lose kids and parents. I have made some wonderful friendships & had my back stabbed by people I thought were friends so badly I thought I'd never trust anyone again. I met someone whom I thought I was going to spend the rest of my life with and now, unfortunately, I don't even know where he is or how he is doing. I went to the most amazing physical therapy center(SCI-Step) & made amazing progress. I've had medical issues that have set me back & not allowed me to have physical therapy. I hope to go back to SCI-Step in the spring. There are some things I need to accomplish in order to do that though. I've had several surgeries, all of which have gone well & have made the progress back to PT better. Needless to say I've had ups & downs. I'm still trying to figure out why I am so exhausted ALL the time. I can't seem to do anything that takes any energy without having to take a nap immediately afterward. I'm looking forward to a Thanksgiving with my sister's future family tomorrow & celebrating another year of being alive.
Nov 23, 2010
I always forget
...to include a MAJOR important factor in my medical history. I don't believe ANY of my dr's actually know about this one, come to think of it, just my dentist. When I was in 3rd grade I was exposed to toxic levels of some nasty chemicals. Specifically a cocktail of Chlorofluorocarbons and Hydroflourcarbons including Durisban, Chlordane and Heptachlor. These were being used in my elementary school classroom to "spray" for termites and were spilled. The school did not properly clean up & a number of children got extremely sick. I always forget to tell my dr's about that exposure & I'm sure if I had it documented it would make that illustrious search for what's wrong with me a LOT easier...UGH, I need to remind myself to tell my dr's about yet one more thing in my medical history....bah...
Nov 22, 2010
A note from my friend
A couple weeks ago my friend Tony & I were talking about pain and how it never goes away. About how we have to find ways to live around our pain & he decided to write a WONDERFULLY descriptive note about living with chronic pain. He has granted me permission to re-post it here to share with other people to give a very vivid description of how chronic pain affects one's daily life. So here's what Tony wrote:
Living with Chronic Pain: A view from the inside
I thought long and hard about even writing this. There are so many people who could do this topic much better justice than I probably will. However, it is my hope, that a glimpse at life from the inside will help those of you who do not have to deal with this, understand those that do just a little better.
For those who don't know, my journey into dealing with chronic pain started with a "routine surgery" completely unrelated to the chronic back pain I now live with. The doctor wasn't even going to do do a full anesthesia but I insisted, and I am glad that I did. It turned out to be anything but routine. I woke up the next day numb from my hips to my ankles, and have been ever since.
I immediately started trying to deal with it as an acute problem. I figured it was a minor thing, that a little Chiropractic and massage therapy would fix, but that was not the case. After a month of almost daily treatments, my Chiropractor told me that something was wrong and I needed to go see my MD. I went to several doctors over the next few months to figure out what was wrong and what my options were. I found out that I have a bulging disk which is pinching the nerve at the point where it splits to go down the sides of my legs, hence the dual numbness. I tried physical therapy, until the Physical Therapist told me that I was in too much pain to continue. I tried water exercise, but the water was too cold and caused my back to seize up worse. I kept up with chiropractic care and massage therapy (neuromuscular therapy to be precise, which unlike the massage you get at the spa, is very deep, and often very painful). I used a series of medications until I found an herbal medicine that would work just as well, which I used until I was on the mend, and didn't need it anymore.I changed my chair at work so I would be more comfortable and not in so much pain at work or after. I went and got a new mattress that was easier on my back. I tried about everything I could think of.
About two and a half years later, after being in relatively minimal pain and feeling pretty good for a while, including my trips at Christmas, attending the rose parade with family, and flying, and staying in various hotels all without incident, I decided to go back to work with a trainer to strengthen my core muscles and back so that I could go back to the gym and begin getting back in shape. I was excited about finally being able to go back and get on what I considered the road to recovery once and for all. The trainer had the best credentials of anyone I had talked to before, and his team of 3 seemed to be just what I needed.
Those of you who saw my status a couple weeks ago know that I had to stop training (again) due to being in pain (again), and how absolutely devastating it was to suffer another setback. One of the 3 trainers had me do an execise I wasn't ready for, and in 45 minutes, 2.5 years of healing was down the tubes, and I was back to struggling with day to day pain.
So what does a day look like and why is it so hard dealing with low grade chronic pain? Well the short version is that it takes effort to do everything. Things that you used to take for granted are now carefully thought out and orchestrated. It is tiring, some days even exhausting, to just get through a day. Not because the muscles are any weaker than they used to be, or because you did such enormous work that day, or because the pain is so sharp that you can't move, or that the muscles don't work at all, it is tiring because it is. As a matter of fact, in theory, there is little that a person in chronic pain cannot do that they did before they started having these issues. The only thing that is different than when I wasn't in chronic pain, is that now there is a cost associated with everything. Every movement, every motion, every action takes a toll. In other words, I can do it, but I might regret it later. So I have to weigh whether it is worth it to do something, instead of just if I want to do it.
To see what this looks like, lets start with the basics. Every single day that I went to sleep the night before, like most people, I get up and get out of bed, 5 of those days it is to go to work. This is a simple act that most people take for granted. When you are in chronic pain, this is not the case. From the time that I wake up, until the time that I get out of bed is several minutes, not because I hit the snooze bar, but because I can't just roll out of bed, jump up, and hit the ground running like I used to. Every single motion is planned and orchestrated. Roll to my side (which in and of itself is not as simple as it might sound, and is significantly more painful some mornings than it should be), pivot my legs down over the edge of the ebd, and slowly let gravity pull me upright. Push off the bed with both hands to get my feet on the ground, and grab the doorframe of the master bath to right myself so I can stand completely upright. Now that I am up, I need to go downstairs. This is a slow measured process so that I don't fall, and I don't pull the railing out of the wall supporting myself. Sometimes I walk, sometimes I limp, sometimes it is easier than others.
Getting a shower, getting dressed, and getting to work takes a similar amount of effort. Putting on shoes and socks is not something that has been this hard since before I knew how to tie my own shoelaces. Getting into the car to go to work, and out of the car at work also takes enormous effort, sometimes more than others. On the worst days, I am pulling myself out by using the doorframe of the car for leverage.
Once at work, I have a pretty typical day. I sit at my desk and do my job, pushing myself in and out of my chair about once an hour to walk around. If I don't get up that often, getting up later gets harder.
After a normal day's work, there are errands to run. Even the simple tasks take more effort. Lets take Grocery Shopping. There are decisions to be made. Do I feel well enough to get all of the stuff on my list? Can I carry it all back to my apartment if I do? Should I grab just a few tide-me-over items and then try again another day? Do I skip the items I can't lift or ask for help? Can I handle bending down to get something off the bottom shelf? Do I grab an alternative that is up at eye level so I don't have to bend? Can I get a gallon of water off the top shelf, or do I use a substitute that is closer to eye level.
Once I get home, there are more decisions to make. Do I carry more in each trip and make fewer trips? Or make more trips and carry less each time? Which items have to get into the house (frozen/fridge stuff) and which can wait. Can I stand up long enough to cook a real dinner, or do I grab a tv dinner or sandwich because I am too exhausted to cook after I get everything in and put away .
And then there is travel. I am fortunate in that I am able to travel fairly easily as long as I stop frequently to stretch and walk around. This makes trips take about 25 percent longer than they should. If you think about it, stopping 4 times for 15 minutes adds an hour to the trip.The longer the trip, the more you have to stop, and the more time that gets added. If you are unlucky enough to get stuck for a couple hours in a traffic jam, or hit a relatively sparse stretch of interstate (Are you listening VADOT?) when you do get to a stopping point, you have to stop longer and it gets harder.
All of this makes life exhausting: mentally, physically, and emotionally, because it doesn't end. It doesn't go away. It can be made better sometimes. It can be helped with medication and various treatments, but you have to constantly figure out which treatments and which meds are working, and which you need to change. You make decisions as to whether you just live with it today, or you take the meds and deal with the side effects. Which is worse, the pain I am in, or the nausea and fatigue that comes from taking the meds. The other problem with the meds is that they do turn off the body's feeback mechanism. You have to be careful when you are out of pain due to meds, that you don't do anything that will make things worse because you can't feel it. It gets worse with the changing seasons, changing weather, or change in activity. There is no such thing as a break. If you have a good day, then you have to decide whether to use it to try to do things (and risk a bad day later because of it), or whether to try and enjoy it as a complete break, and get further behind on everything else which will have to be caught up later. Usually for me it is somewhere in between.
There is no such thing as a respite. Only varying degrees of severity.
And then there is the emotional side of the equation. If you discount all the chemical and physiological effects of pain on your mind and body, you still have an emotional side of the equation to deal with. When you struggle to get into and out of a chair, it is hard to consider yourself not a failure, a cripple, or just plain useless. When you have to ask someone, sometimes someone older than you, to get something off a shelf at the grocery store, or to carry your groceries to your car, it hurts emotionally. Sometimes you try to explain (I have a back injiury), sometimes you apologize (I'm sorry, but could you grab that jar of mayonaise off the bottom shelf for me? I have a back problem and can't bend), sometimes you give up (I'll just live without it), but you always get "the look".
You know the look. It is the same look that you give someone who gets out of a car in a handicapped spot and looks just fine to you. It is the look that you give the person who parks in the "expectant mothers" parking who doesn't look like she is pregnant. Yes, it is that look. It comes from the teenaged cashier and the person in front of you or behind you in line when you ask the bagger to unload your cart. It comes from the mother in the parking lot who just got out of the car with her kids in tow and sees the bagger who is older than you by more than a decade packing your car. Yes, it is there. And yes, we do notice when you to act like you didn't notice and didn't give us "the look".
And when your friends ask you what's wrong (or in my case, why are you limping?), or try to help you because they can see you are struggling and they want to help, it is a great feeling to know they care. But it hurts like heck to think that you have been reduced to that level. We all want to be self sufficient and don't want to have to ask others for help. You find ways to hide it, you bite your lip when you move so that the groan won't escape, and you fight like you've never fought before not to wince or cry until you reach the safety of your car. You try to sit by people who don't know you so they nobody sees you pushing yourself in and out of the chair by using the back of the chair in front of you as a support.
And then, just when you feel like it can't get any worse, you read the story in the news about the three guys with 1 natural leg between them who climbed Everest, or the double amputee who runs in the Boston Marathon, or any number of other heartwarming stories of courage and perseverance, you sit down and bawl, wondering how the heck they can do that, and you can't even seem to manage getting a full day's work done without feeling like you want to crawl under the covers and die.
You find things you enjoy that you can still do, and make plans to do them. Careful plans. Plans with backups and backouts in case something goes wrong. You find tricks to help you. For example, those of you who have been with me at Fusion at night lately have noticed I am seldom without a flashlight, and many have wondered why I would carry a flashlight in my pocket. I carry it for one simple reason. If I put my foot down wrong, trip, stumble or fall, it isn't an embarrassing inconvenience that I can just shake off. It is a serious problem that I will be dealing with for a day or two if I am lucky, longer if I am not.
Through all this, you try to keep a good face on. When you get to your lowest of lows, you get determined to fight back and push through and conquer this obstacle. Except it isn't an obstacle that is ever fully conquered. It is a race that is run one step at a time, one day at a time, one week, month, or year at a time. It is a race that it is run without knowing where or when the finish line is. It is a race that you didn't enter, and that you can not win. But it is a race that you have no choice but to run because you haven't been given a choice in the matter. You didn't ask for this. You didn't do anything wrong, silly or stupid. You simply were at the wrong place at the wrong time, lucky enough to be the one in a million (but not lucky enough that it would happen when you pick numbers for the lottery), or a victim of your own life, genetics or family history.
So the next time you see one of us, one of us who tries to suffer quietly, but has reached the end of their rope, don't ask us what's wrong of if we need help. Offer us a hand to pull ourselves up, a shoulder to cry on, or a prayer for a better tomorrow. It will be greatly appreciated.
For those who don't know, my journey into dealing with chronic pain started with a "routine surgery" completely unrelated to the chronic back pain I now live with. The doctor wasn't even going to do do a full anesthesia but I insisted, and I am glad that I did. It turned out to be anything but routine. I woke up the next day numb from my hips to my ankles, and have been ever since.
I immediately started trying to deal with it as an acute problem. I figured it was a minor thing, that a little Chiropractic and massage therapy would fix, but that was not the case. After a month of almost daily treatments, my Chiropractor told me that something was wrong and I needed to go see my MD. I went to several doctors over the next few months to figure out what was wrong and what my options were. I found out that I have a bulging disk which is pinching the nerve at the point where it splits to go down the sides of my legs, hence the dual numbness. I tried physical therapy, until the Physical Therapist told me that I was in too much pain to continue. I tried water exercise, but the water was too cold and caused my back to seize up worse. I kept up with chiropractic care and massage therapy (neuromuscular therapy to be precise, which unlike the massage you get at the spa, is very deep, and often very painful). I used a series of medications until I found an herbal medicine that would work just as well, which I used until I was on the mend, and didn't need it anymore.I changed my chair at work so I would be more comfortable and not in so much pain at work or after. I went and got a new mattress that was easier on my back. I tried about everything I could think of.
About two and a half years later, after being in relatively minimal pain and feeling pretty good for a while, including my trips at Christmas, attending the rose parade with family, and flying, and staying in various hotels all without incident, I decided to go back to work with a trainer to strengthen my core muscles and back so that I could go back to the gym and begin getting back in shape. I was excited about finally being able to go back and get on what I considered the road to recovery once and for all. The trainer had the best credentials of anyone I had talked to before, and his team of 3 seemed to be just what I needed.
Those of you who saw my status a couple weeks ago know that I had to stop training (again) due to being in pain (again), and how absolutely devastating it was to suffer another setback. One of the 3 trainers had me do an execise I wasn't ready for, and in 45 minutes, 2.5 years of healing was down the tubes, and I was back to struggling with day to day pain.
So what does a day look like and why is it so hard dealing with low grade chronic pain? Well the short version is that it takes effort to do everything. Things that you used to take for granted are now carefully thought out and orchestrated. It is tiring, some days even exhausting, to just get through a day. Not because the muscles are any weaker than they used to be, or because you did such enormous work that day, or because the pain is so sharp that you can't move, or that the muscles don't work at all, it is tiring because it is. As a matter of fact, in theory, there is little that a person in chronic pain cannot do that they did before they started having these issues. The only thing that is different than when I wasn't in chronic pain, is that now there is a cost associated with everything. Every movement, every motion, every action takes a toll. In other words, I can do it, but I might regret it later. So I have to weigh whether it is worth it to do something, instead of just if I want to do it.
To see what this looks like, lets start with the basics. Every single day that I went to sleep the night before, like most people, I get up and get out of bed, 5 of those days it is to go to work. This is a simple act that most people take for granted. When you are in chronic pain, this is not the case. From the time that I wake up, until the time that I get out of bed is several minutes, not because I hit the snooze bar, but because I can't just roll out of bed, jump up, and hit the ground running like I used to. Every single motion is planned and orchestrated. Roll to my side (which in and of itself is not as simple as it might sound, and is significantly more painful some mornings than it should be), pivot my legs down over the edge of the ebd, and slowly let gravity pull me upright. Push off the bed with both hands to get my feet on the ground, and grab the doorframe of the master bath to right myself so I can stand completely upright. Now that I am up, I need to go downstairs. This is a slow measured process so that I don't fall, and I don't pull the railing out of the wall supporting myself. Sometimes I walk, sometimes I limp, sometimes it is easier than others.
Getting a shower, getting dressed, and getting to work takes a similar amount of effort. Putting on shoes and socks is not something that has been this hard since before I knew how to tie my own shoelaces. Getting into the car to go to work, and out of the car at work also takes enormous effort, sometimes more than others. On the worst days, I am pulling myself out by using the doorframe of the car for leverage.
Once at work, I have a pretty typical day. I sit at my desk and do my job, pushing myself in and out of my chair about once an hour to walk around. If I don't get up that often, getting up later gets harder.
After a normal day's work, there are errands to run. Even the simple tasks take more effort. Lets take Grocery Shopping. There are decisions to be made. Do I feel well enough to get all of the stuff on my list? Can I carry it all back to my apartment if I do? Should I grab just a few tide-me-over items and then try again another day? Do I skip the items I can't lift or ask for help? Can I handle bending down to get something off the bottom shelf? Do I grab an alternative that is up at eye level so I don't have to bend? Can I get a gallon of water off the top shelf, or do I use a substitute that is closer to eye level.
Once I get home, there are more decisions to make. Do I carry more in each trip and make fewer trips? Or make more trips and carry less each time? Which items have to get into the house (frozen/fridge stuff) and which can wait. Can I stand up long enough to cook a real dinner, or do I grab a tv dinner or sandwich because I am too exhausted to cook after I get everything in and put away .
And then there is travel. I am fortunate in that I am able to travel fairly easily as long as I stop frequently to stretch and walk around. This makes trips take about 25 percent longer than they should. If you think about it, stopping 4 times for 15 minutes adds an hour to the trip.The longer the trip, the more you have to stop, and the more time that gets added. If you are unlucky enough to get stuck for a couple hours in a traffic jam, or hit a relatively sparse stretch of interstate (Are you listening VADOT?) when you do get to a stopping point, you have to stop longer and it gets harder.
All of this makes life exhausting: mentally, physically, and emotionally, because it doesn't end. It doesn't go away. It can be made better sometimes. It can be helped with medication and various treatments, but you have to constantly figure out which treatments and which meds are working, and which you need to change. You make decisions as to whether you just live with it today, or you take the meds and deal with the side effects. Which is worse, the pain I am in, or the nausea and fatigue that comes from taking the meds. The other problem with the meds is that they do turn off the body's feeback mechanism. You have to be careful when you are out of pain due to meds, that you don't do anything that will make things worse because you can't feel it. It gets worse with the changing seasons, changing weather, or change in activity. There is no such thing as a break. If you have a good day, then you have to decide whether to use it to try to do things (and risk a bad day later because of it), or whether to try and enjoy it as a complete break, and get further behind on everything else which will have to be caught up later. Usually for me it is somewhere in between.
There is no such thing as a respite. Only varying degrees of severity.
And then there is the emotional side of the equation. If you discount all the chemical and physiological effects of pain on your mind and body, you still have an emotional side of the equation to deal with. When you struggle to get into and out of a chair, it is hard to consider yourself not a failure, a cripple, or just plain useless. When you have to ask someone, sometimes someone older than you, to get something off a shelf at the grocery store, or to carry your groceries to your car, it hurts emotionally. Sometimes you try to explain (I have a back injiury), sometimes you apologize (I'm sorry, but could you grab that jar of mayonaise off the bottom shelf for me? I have a back problem and can't bend), sometimes you give up (I'll just live without it), but you always get "the look".
You know the look. It is the same look that you give someone who gets out of a car in a handicapped spot and looks just fine to you. It is the look that you give the person who parks in the "expectant mothers" parking who doesn't look like she is pregnant. Yes, it is that look. It comes from the teenaged cashier and the person in front of you or behind you in line when you ask the bagger to unload your cart. It comes from the mother in the parking lot who just got out of the car with her kids in tow and sees the bagger who is older than you by more than a decade packing your car. Yes, it is there. And yes, we do notice when you to act like you didn't notice and didn't give us "the look".
And when your friends ask you what's wrong (or in my case, why are you limping?), or try to help you because they can see you are struggling and they want to help, it is a great feeling to know they care. But it hurts like heck to think that you have been reduced to that level. We all want to be self sufficient and don't want to have to ask others for help. You find ways to hide it, you bite your lip when you move so that the groan won't escape, and you fight like you've never fought before not to wince or cry until you reach the safety of your car. You try to sit by people who don't know you so they nobody sees you pushing yourself in and out of the chair by using the back of the chair in front of you as a support.
And then, just when you feel like it can't get any worse, you read the story in the news about the three guys with 1 natural leg between them who climbed Everest, or the double amputee who runs in the Boston Marathon, or any number of other heartwarming stories of courage and perseverance, you sit down and bawl, wondering how the heck they can do that, and you can't even seem to manage getting a full day's work done without feeling like you want to crawl under the covers and die.
You find things you enjoy that you can still do, and make plans to do them. Careful plans. Plans with backups and backouts in case something goes wrong. You find tricks to help you. For example, those of you who have been with me at Fusion at night lately have noticed I am seldom without a flashlight, and many have wondered why I would carry a flashlight in my pocket. I carry it for one simple reason. If I put my foot down wrong, trip, stumble or fall, it isn't an embarrassing inconvenience that I can just shake off. It is a serious problem that I will be dealing with for a day or two if I am lucky, longer if I am not.
Through all this, you try to keep a good face on. When you get to your lowest of lows, you get determined to fight back and push through and conquer this obstacle. Except it isn't an obstacle that is ever fully conquered. It is a race that is run one step at a time, one day at a time, one week, month, or year at a time. It is a race that it is run without knowing where or when the finish line is. It is a race that you didn't enter, and that you can not win. But it is a race that you have no choice but to run because you haven't been given a choice in the matter. You didn't ask for this. You didn't do anything wrong, silly or stupid. You simply were at the wrong place at the wrong time, lucky enough to be the one in a million (but not lucky enough that it would happen when you pick numbers for the lottery), or a victim of your own life, genetics or family history.
So the next time you see one of us, one of us who tries to suffer quietly, but has reached the end of their rope, don't ask us what's wrong of if we need help. Offer us a hand to pull ourselves up, a shoulder to cry on, or a prayer for a better tomorrow. It will be greatly appreciated.
Nov 18, 2010
Diagnosies, Symptoms & Medications
A quick rundown on what I'm dealing with & some of the symptoms as well as the meds I take to help make life liveable.
Medications & Supplements I take:
This ever growing list of pills allows me to function. Crazy as it sounds, the supplements make more of a difference most days than the pain medications do. If I don't take the supplements I can't function to get out of bed, much less do anything productive.
- Spinal Cord Injury(SCI)
- Neuropathic Pain
- Musculo-skeletal pain
- mobility issues
- Neurogenic Bowel
- Neurogenic Bladder
- skin problems and suceptability to pressure wounds
- Begnin Multi-Nodular Cold Thyroid Nodules
- This caused a major cancer scare, no cancer however constant monitoring is required
- Hypothyroidism
- Silent Reflux/GERD
- Vocal Cord Granulomas
- loss of voice
- difficulty breathing
- Adrenal Fatigue
- This is a disfunction of the Adrenal gland, it affects every system in the body.
- Symptoms of Chronic Fatigue Syndrome
- exhaustion, exhaustion, exhaustion
- Fibromyalgia
- again, exhaustion
- neuropathic pain
- muscular pain
- sleep deprivation, poor sleep schedule(hence posting between 4 & 6am)
- foggy brain
- Chronic Pancreatitis with unknown source
- I've been hospitalized 3x due to this. My GI dr SUCKS and am in process of seeking out a new one.
Medications & Supplements I take:
- Topamax
- Zanaflex
- Prevacid
- Cymbalta
- Hydrocodone
- Zyrtec
- Twice Daily multi-vitamin(I'll link the maker later)
- Co-Q10
- Magnesium
- Zinc
- OsCal+D
- EsterC
- Ashwaghanda
- Gotu Kola
- Rhodiola
- Reservatrol
- Bio-Freeze
- Voltaren Gel
- Lidoderm Patches(when I can afford them)
This ever growing list of pills allows me to function. Crazy as it sounds, the supplements make more of a difference most days than the pain medications do. If I don't take the supplements I can't function to get out of bed, much less do anything productive.
A little history & medical background
Well, y'all got this far so you must not be bored to tears about me. To say that I'm no stranger to hospitals would be an understatement. I was a fearless accident prone child with a pain-related seizure disorder. Anything that could potentially cause an injury, I wanted to do and found a way to do...And somehow I only got injured doing the "normal" things. 'Ya know, like pulling out a loose tooth as a 4th grader, riding my bicycle up the next door neighbor's driveway after crossing the street to avoid the glass in the one prior. I didn't get hurt doing the crazy things like walking along the edge of the Grand Canyon or throwing myself in the waves of the Pacific Ocean when they threw me back upon the shore completely short of breath...That was just fun, purely fun...I climbed trees, ran races, competed with the boys, nothing ever stopped me...Even when I had a broken collarbone. My seizures made it so that I wasn't supposed to do things that put me in immenint danger, so what did I want to do in sports? Play catcher in softball & goalie in soccer...Yeah, I was just a mite bit of a thrill seeker...and that adrenaline junkie hasn't gone anywhere.
As a younger adult I was stubborn, extremely stubborn when it came to health-care. I had GOOD insurance too. I worked for a MAJOR corporation with really good benefits & had no excuse for NOT going to the dr for anything...I was so stubborn that at one point, my roommate had to force me by dragging me out of the house under false pretenses when I had been vomiting for two days...I came to find out I had a really bad kidney infection & was on the borderline of having to be admitted to the hospital...Yeah, I was quite stubborn....
Fast Forward to November of 2003...I was forced to go to the hospital, not under my own volition. I fell 25' while working. I was doing the 'safe' job that day...I was climbing and 80' ladder to use a radio to communicate with the person doing the dangerous work & the people on a ground crew...Earlier in the day I'd been doing really dangerous stuff moving equipment on the same type of ladders & NOT gotten injured, NOT had trouble, but apparently my history of injuries doing the safe things caught up with me...go figure. As a result, I have a Spinal Cord Injury(SCI). The injury in and of itself could have been a TON worse, for that I am grateful. The complications from it can be a pain in the a**. This has been a lesson in going to the doctor. a HUGE lesson...The first lesson I had was while I was still in the trauma hospital & they had to convince me that it was OK to take pain medications...I was so argumentative against taking anything, yet I was in so much pain that I couldn't function. period. They were giving me IV Morphine AND oral Morphine, I was constantly in pain & wouldn't ask for meds...I had several family members and medical professionals lecture me about how I couldn't heal if I was in too much pain. I eventually gave in and got some relief...That was the 1st step in my learning that dr's were there to help & you could ASK for things when you needed it. Now, my rehab experience is a chapter unto itself & didn't teach me any of that...it was a nightmare. Another story for another time...maybe...
Anyway, since then, I've been diagnosed with a handful of other Chronic conditions and the complexity of battling the SCI complications with the Chronic illnesses can be a full time job. Sometimes I meet people & they ask what I do & most of the time my answer is that most of my time lately is spent going to dr's...Lately has been the past 3 years, minimum...7max...Somewhere in between there I've lived with the medical profession. I swear at times I'm a walking pharmacy, others a walking PDR. I know so many drugs and drug interactions off the top of my head it's insane...
As a younger adult I was stubborn, extremely stubborn when it came to health-care. I had GOOD insurance too. I worked for a MAJOR corporation with really good benefits & had no excuse for NOT going to the dr for anything...I was so stubborn that at one point, my roommate had to force me by dragging me out of the house under false pretenses when I had been vomiting for two days...I came to find out I had a really bad kidney infection & was on the borderline of having to be admitted to the hospital...Yeah, I was quite stubborn....
Fast Forward to November of 2003...I was forced to go to the hospital, not under my own volition. I fell 25' while working. I was doing the 'safe' job that day...I was climbing and 80' ladder to use a radio to communicate with the person doing the dangerous work & the people on a ground crew...Earlier in the day I'd been doing really dangerous stuff moving equipment on the same type of ladders & NOT gotten injured, NOT had trouble, but apparently my history of injuries doing the safe things caught up with me...go figure. As a result, I have a Spinal Cord Injury(SCI). The injury in and of itself could have been a TON worse, for that I am grateful. The complications from it can be a pain in the a**. This has been a lesson in going to the doctor. a HUGE lesson...The first lesson I had was while I was still in the trauma hospital & they had to convince me that it was OK to take pain medications...I was so argumentative against taking anything, yet I was in so much pain that I couldn't function. period. They were giving me IV Morphine AND oral Morphine, I was constantly in pain & wouldn't ask for meds...I had several family members and medical professionals lecture me about how I couldn't heal if I was in too much pain. I eventually gave in and got some relief...That was the 1st step in my learning that dr's were there to help & you could ASK for things when you needed it. Now, my rehab experience is a chapter unto itself & didn't teach me any of that...it was a nightmare. Another story for another time...maybe...
Anyway, since then, I've been diagnosed with a handful of other Chronic conditions and the complexity of battling the SCI complications with the Chronic illnesses can be a full time job. Sometimes I meet people & they ask what I do & most of the time my answer is that most of my time lately is spent going to dr's...Lately has been the past 3 years, minimum...7max...Somewhere in between there I've lived with the medical profession. I swear at times I'm a walking pharmacy, others a walking PDR. I know so many drugs and drug interactions off the top of my head it's insane...
Welcome and an Intro
Hello to those whom may have stumbled upon my newly created blog. I have created this as my place to express what it's like and provide others with a little glimpse into what it's like living chronically. What do I mean by living chronically? Well, I have a myriad of medical issues, none of them "life threatening" however they are chronic in many ways, chronic in that they are always there, I can't escape them, and they will eventually get worse, and also chronic as in I've got chronic pain. It is always there, some days just a dull reminder that it exists & I can't escape it & some days so bad that I can not function. Living chronically is an exercise in exhaustion. The dr's appointments are never ending, the medications cost more than the food I eat in some instances & the continual additional issues coming up with no explanation is downright exhausting.
Although these chronic things exhaust me and wear me down, I still do my best to enjoy my life. I don't let them keep me from doing the things I REALLY want to do. I do, sometimes pay for it later, however. My birthday was last summer(it was a biggie) and I fulfilled a lifelong dream! I got to jump out of a perfectly good airplane. It was the most exhilarating thing I've experienced in a long time. The minute I landed, I wanted to go up again. I am a roller-coaster junkie and love to go to theme parks. These are things that completely exhaust me & I typically require a well planned out excursion w/an overnight stay in a town that's normally a short drive from my home in order to accomplish doing these things. In the past few years my excursions and adventures have dwindled as my chronic conditions have worsened.
In my next few posts I'll go into all the wonderful details of my medical history/issues and how it affects me.
Thank you for entering my world.
Although these chronic things exhaust me and wear me down, I still do my best to enjoy my life. I don't let them keep me from doing the things I REALLY want to do. I do, sometimes pay for it later, however. My birthday was last summer(it was a biggie) and I fulfilled a lifelong dream! I got to jump out of a perfectly good airplane. It was the most exhilarating thing I've experienced in a long time. The minute I landed, I wanted to go up again. I am a roller-coaster junkie and love to go to theme parks. These are things that completely exhaust me & I typically require a well planned out excursion w/an overnight stay in a town that's normally a short drive from my home in order to accomplish doing these things. In the past few years my excursions and adventures have dwindled as my chronic conditions have worsened.
In my next few posts I'll go into all the wonderful details of my medical history/issues and how it affects me.
Thank you for entering my world.
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