I have been pretty fortunate overall to have understanding people, but over the 12 years I have experienced all of these at one point or another by someone. Many close friends have had the unfortunate experience of losing MANY more people than I have and dealt with a lot more issues more frequently related to all this. I just felt like I needed to educate people on invisible illness and the need to not make assumptions just because someone doesn't look sick.
The one you called lazy has been up all night sick & fought to get out of bed just to make it through the doors to work or school.
The one you say is attention seeking because they use a medical device or parked in HP spot & doesn't "look" sick considered leaving that device at home, just to appear normal, but would be putting health and comfort at risk.
The one who went to the bathroom after eating only a few bites that you accused of having an ED has a paralyzed GI tract (Gatroparesis and Chronic intestinal pseudo-obstruction) & can't keep food down.
The one you judged & shut up for being honest when you asked how they felt just needed someone they thought cared to open up with. Don't ask if you don't really want to know.
The one you cut out of your life because they can't spend as much social time with you and missed your party or wedding has been fighting just to make it through a single day & accomplish basic daily tasks and chores. Why not visit THEM for once and plan an activity they can participate in?
The one you used to love & cut out of your life because they are not the same has an invisible illness & needs to be understood. Listen to their story. If you don't believe them, talk to others who are in the same shoes. So many people with the same stories aren't making this stuff up! Plus, look at the medical test results and description of what their diagnosis can do!
The one who didn't buy you a nice gift in return for a nice gift you gave them is on disability, has high medical expenses & is just trying to keep from going into debt from medical bills and general living expenses alone.
The one you accused of being depressed and not physically caring for themselves had to lay down five times in between bathing, dressing, taking meds, and doing simple "get ready to go out" tasks. They may have had to shower the day before simply to be able to get up and go the next day.They may have been up for two-three hours just preparing to go out and be somewhat presentable. They are just TIRED from simply doing that and may not feel very social!
The one you gossiped about for not dressing as appropriately as necessary may not be able to wear "normal" clothes. They may have a paralyzed gut that holds food in, making them bloated and they need to wear comfortable clothes. Their hair may be falling out from poor nutrition and they may need that scarf or hat to hide bald spots. They may have pain from osteoporosis, neuropathy, auto-immune disorders, and need to wear comfortable shoes.
The one you accused of being self-focused and not caring about you is dealing with so many overwhelming pressures and fears themselves that sometimes they just can't give back what you expect or want. But they DO care about you too.
People with invisible illnesses need your support & need to feel included. They need to be treated normally, but also need to know you are there for them if they need you. Don't think of them as being lazy, attention seeking, making things up, self-centered, or not caring about you & YOUR needs too. Your accusations only make their situations worse and harder to manage.
Tuesday, March 15, 2011
Saturday, March 12, 2011
March 11, 2006 vs. March 11, 2011
I'm too tired to blog much for March 11, 2006. I'll write more on the 12th (it actually is the 12th, but this is for the 11th!). It was two days before my transplant. I honestly don't remember much about those last few weeks. Either I was too sick to comprehend them much, or the anesthesia and transplant trauma wiped out the last few weeks of my pre-transplant life. I'm basing my memories on the overall life before transplant and fill-ins from what I have been told.
For tonight I am just going to say that I know on March 11, 2006 it was a Saturday. I never liked Saturday's. I don't know why...they were just like almost any other day except the TV shows were all different. They seemed to drag on FOREVER. Plus, my mom usually went grocery shopping or out to run other errands so I would get kind of lonely. That just describes how much my life was so limited. It all revolved around surviving...just getting through one minute, one hour...from one TV show to the next. There was nothing I looked forward to. I was glad when I slept, and not happy to be awake! There was nothing to live for, at least not that I felt!
The difference now? I fight sleep! I want to be awake more often than not. I have too much to do to sleep. Sleep? Who has time for that? I have a website to launch, fans to keep updated, friends to connect with, people to see, errands to run, projects to work on, phone calls to make, e-mails to answer...oh, can't forget about my Frontier...can't let the chicken go hungry, gotta cure the pox...oh wait, it's 6 PM...have I even had a snack all day to supplement my tube feedings? Dang, it's time to hook up. I don't have the time to hook up! Wait...tomorrow I am supposed to do what? But I want to do that now while it's on my mind and I know I am anxious to get it done. Must I stop what I am doing? Which project do I make priority? They are all priorities and I wanted to have them all done last week! What is on TV these days anyway? Carissa time? HA! I've gone to the OTHER end of the spectrum! Now I am trying to make up for what I lost!
It's all become background noise...the TV isn't how I pass the time or define my days and time. My days tend to fly by too quickly now because they are so full of...something! Something productive. Something with hope and a future. Something that could change the world. Something selfless and others focused. Something that keeps my heart beating with passion...and sometimes with anxiety and stress! :) But nonetheless, I love it. I love life. I love waking up with things to do and I hate going to sleep until it's all done. It will never be done, so I prefer not to sleep. Of course, that only lasts so long......and then I find myself asleep on the keyboard in the middle of a project, e-mail, or FB message...sometimes I read my outbox and think to myself...what was I thinking??? I was obviously half asleep. I have woken up in the middle of the night with my fingers still on the keyboard and a completely nonsensical message halfway completed. Good thing I never hit send...I push myself to the ultimate end until I literally, drop off to sleep. I just enjoy being awake and enjoying every moment I have. I don't want to sleep through them...even the tough ones I want to face up front. I'm not quite THAT strong though...I DO have my days when I just prefer to take my "happy drugs" and just sleep it all off. I just know it will all still be there when I wake back up, but I'm ok with that. I can handle it now. It's not too much for me and I welcome the challenge. There is way too much GOOD in my life to let life bring me down for long. Sure, I get down, but it doesn't take long for me to get back up anymore because I know I don't have the time for that...and speaking of sleep...more blogging later on the 12th...hopefully on the actual 12th and not the 13th!
For tonight I am just going to say that I know on March 11, 2006 it was a Saturday. I never liked Saturday's. I don't know why...they were just like almost any other day except the TV shows were all different. They seemed to drag on FOREVER. Plus, my mom usually went grocery shopping or out to run other errands so I would get kind of lonely. That just describes how much my life was so limited. It all revolved around surviving...just getting through one minute, one hour...from one TV show to the next. There was nothing I looked forward to. I was glad when I slept, and not happy to be awake! There was nothing to live for, at least not that I felt!
The difference now? I fight sleep! I want to be awake more often than not. I have too much to do to sleep. Sleep? Who has time for that? I have a website to launch, fans to keep updated, friends to connect with, people to see, errands to run, projects to work on, phone calls to make, e-mails to answer...oh, can't forget about my Frontier...can't let the chicken go hungry, gotta cure the pox...oh wait, it's 6 PM...have I even had a snack all day to supplement my tube feedings? Dang, it's time to hook up. I don't have the time to hook up! Wait...tomorrow I am supposed to do what? But I want to do that now while it's on my mind and I know I am anxious to get it done. Must I stop what I am doing? Which project do I make priority? They are all priorities and I wanted to have them all done last week! What is on TV these days anyway? Carissa time? HA! I've gone to the OTHER end of the spectrum! Now I am trying to make up for what I lost!
It's all become background noise...the TV isn't how I pass the time or define my days and time. My days tend to fly by too quickly now because they are so full of...something! Something productive. Something with hope and a future. Something that could change the world. Something selfless and others focused. Something that keeps my heart beating with passion...and sometimes with anxiety and stress! :) But nonetheless, I love it. I love life. I love waking up with things to do and I hate going to sleep until it's all done. It will never be done, so I prefer not to sleep. Of course, that only lasts so long......and then I find myself asleep on the keyboard in the middle of a project, e-mail, or FB message...sometimes I read my outbox and think to myself...what was I thinking??? I was obviously half asleep. I have woken up in the middle of the night with my fingers still on the keyboard and a completely nonsensical message halfway completed. Good thing I never hit send...I push myself to the ultimate end until I literally, drop off to sleep. I just enjoy being awake and enjoying every moment I have. I don't want to sleep through them...even the tough ones I want to face up front. I'm not quite THAT strong though...I DO have my days when I just prefer to take my "happy drugs" and just sleep it all off. I just know it will all still be there when I wake back up, but I'm ok with that. I can handle it now. It's not too much for me and I welcome the challenge. There is way too much GOOD in my life to let life bring me down for long. Sure, I get down, but it doesn't take long for me to get back up anymore because I know I don't have the time for that...and speaking of sleep...more blogging later on the 12th...hopefully on the actual 12th and not the 13th!
Thursday, March 10, 2011
My life March 10, 2006 vs.now
On March 10, 2006, it was a Friday, just three days before I would get my transplant call. I'm sure I had to go to 7W that day for something because I was so sick. I was living at the Family House with my mom where we had been since Dec. 2004. I had given up on ever getting a call by this point. The hardest part of transplant world is the wait...the never ending wait for that call. Knowing you always had to be near a phone or pager in case the call came in, the limitations on traveling so you could be close to the hospital, and then getting the dreaded call that doesn't end up working out in the end after hours of prep for surgery.
Kareem had asked me days earlier if I was starting to give up. I was. It was my turn for organs. It had been for a long time. So many who came after me and were far less ill had already received theirs and were returning to more normal lives and had been able to go "home home" from the hospital. I needed that call...and soon. The real one. I needed my organs or I wanted to just go home and finish out whatever days I had left.
The previous week my mom had left Pittsburgh and come home to take a break, at the advice if my doctors, so she would be strong and capable of caring for me post-tx. She left me in the care of my grandmother. I was so scared while she was gone and sobbed and sobbed up to her leaving because I was so scared that while she was gone, my grandmother would walk in my room one morning and find me dead. I knew there wasn't much time, but I never told my family this. I kept that bottled up inside.
Now, 5 years later I am living at home again and not sitting around waiting for the call. In fact, I am trying to avoid any calls that have anything to do with Pittsburgh! Some of my friends transplanted before me are doing well, and some I have lost. But I am plugging away and have been able to move on with my life outside of the hospital and away from Pittsburgh. My life no longer revolves around Pittsburgh and my health, but is more about my life and Pittsburgh and my health is part of my life. It is NOT my life any more. I can focus on the future more in terms of months and years, rather than days or hours. I no longer have to hook up to complicated and dangerous IV feedings, antibiotics, or deal with central line sterility. I have a feeding tube now, but I am much safer with it than IV lines and generally manage the feedings much better than I did pre-transplant. In spite of that, I am still able to eat and drink some to supplement them.
I have been able to resume my hobbies and start new ones. I get out of bed on my own and shower on my own, and the years of sponge bathing to protect my IV lines are a memory. My mom has been able to return to work and her more normal life too. She no longer has to care for me 24/7. I do not have to accept deliveries of TPN and supplies once a week, and my refrigerator has FOOD and DRINKS instead of bags of white fluid full of lipids, vitamins, and minerals intended to drip through a vein and not enter naturally- like through the mouth. What is in my refrigerator now is much tastier and less stinky too (unless I forget to clean it out regularly...and find baking soda boxes that expired in 2007...)...
Kareem had asked me days earlier if I was starting to give up. I was. It was my turn for organs. It had been for a long time. So many who came after me and were far less ill had already received theirs and were returning to more normal lives and had been able to go "home home" from the hospital. I needed that call...and soon. The real one. I needed my organs or I wanted to just go home and finish out whatever days I had left.
The previous week my mom had left Pittsburgh and come home to take a break, at the advice if my doctors, so she would be strong and capable of caring for me post-tx. She left me in the care of my grandmother. I was so scared while she was gone and sobbed and sobbed up to her leaving because I was so scared that while she was gone, my grandmother would walk in my room one morning and find me dead. I knew there wasn't much time, but I never told my family this. I kept that bottled up inside.
Now, 5 years later I am living at home again and not sitting around waiting for the call. In fact, I am trying to avoid any calls that have anything to do with Pittsburgh! Some of my friends transplanted before me are doing well, and some I have lost. But I am plugging away and have been able to move on with my life outside of the hospital and away from Pittsburgh. My life no longer revolves around Pittsburgh and my health, but is more about my life and Pittsburgh and my health is part of my life. It is NOT my life any more. I can focus on the future more in terms of months and years, rather than days or hours. I no longer have to hook up to complicated and dangerous IV feedings, antibiotics, or deal with central line sterility. I have a feeding tube now, but I am much safer with it than IV lines and generally manage the feedings much better than I did pre-transplant. In spite of that, I am still able to eat and drink some to supplement them.
I have been able to resume my hobbies and start new ones. I get out of bed on my own and shower on my own, and the years of sponge bathing to protect my IV lines are a memory. My mom has been able to return to work and her more normal life too. She no longer has to care for me 24/7. I do not have to accept deliveries of TPN and supplies once a week, and my refrigerator has FOOD and DRINKS instead of bags of white fluid full of lipids, vitamins, and minerals intended to drip through a vein and not enter naturally- like through the mouth. What is in my refrigerator now is much tastier and less stinky too (unless I forget to clean it out regularly...and find baking soda boxes that expired in 2007...)...
What I was doing on March 9, 2006 vs.now
My transplant b-day is on March 13, 2011. I am writing some of my thoughts of life before transplant down as I am about to turn five years old with my new organs!
On March 9, 2006 I was lying in bed all day watching TV and sleeping, hardly able to walk a few feet to the bathroom, unable to care for myself at all. I needed my mom to keep track of everything for me, put my meds together, and hook me up to my IV fluids and TPN every day. I was hooked up to two drainage tubes from my gut, IV lines, and an ostomy bag. I was never on the computer and disconnected from everyone. People tired me out and my previous love for kids changed because they were too energetic for me to keep up with. I had no hobbies, no life whatsoever. I was unable to keep up with G-PACT and had no passion to see it continue or succeed. I had stopped going to church years before this because I was too tired to ever get out of bed that early and didn't make it a priority to try. I never went out for fun. I had no energy and was very depressed. I was very malnourished at 62 pounds and nearing the end of my life at that point.
Now I am able to drive most of the time, can care for myself physically, volunteer with kids at LCBC (my church) and in the office during the week. I have a Life Group from church and have developed some very close friendships. My passion for G-PACT is so extreme and my desire to see its success and help find a cure for DTP is phenomenal, even stronger than the early years when it was founded. I want to fight for everyone, whether I will ever personally physically benefit from it as a result or not.
I love people so much. I love everyone and value every single relationship I have. Whether I know someone in person or just through the internet, I love you and want to help you and get to know you better. I don't care whether we agree politically, religiously, or what your background is...it doesn't matter. Even if you cut me down or don't agree with some of the things I do or the way I think, it doesn't matter. I care about you, perhaps sometimes too much that it really affects me! Your life matters to me. Your hurt, pain, and burdens, no matter what they may be, are important to me.
I absolutely love kids. It hurts when I want to get down on the floor and wrestle and tangle, but just don't have the strength or energy and have to to be careful to not break any bones! But I often ignore that and find myself in a "pillow sandwich" anyway! I push myself to the limits because I want to make up for so many lost years in bed. I love it. I love being busy. I love waking up in the morning with a lot to do! I love working with people to fight DTP and I love the activities, opportunities I have had, and the fabulous people I have met in the past five years that I wouldn't have if not given a second chance!
So, since March 9, 2005 one of the biggest things for me that I have been able to experience is life in a new way...with new vision, new perspective, new passion, new love, renewed hope, and a totally changed attitude towards the importance of life and living it out to the absolute fullest. My love for others has changed. I want to give back to everyone however I can since I will never be able to give back what was given to me! I want to utilize the gift I have been given to the maximum by giving and improving life for others through any means possible...whether a cure for DTP, a relief of a burden, hope, a joke to make you laugh, a card or gift to make you smile, or doing a simple task to help lighten your load!
On March 9, 2006 I was lying in bed all day watching TV and sleeping, hardly able to walk a few feet to the bathroom, unable to care for myself at all. I needed my mom to keep track of everything for me, put my meds together, and hook me up to my IV fluids and TPN every day. I was hooked up to two drainage tubes from my gut, IV lines, and an ostomy bag. I was never on the computer and disconnected from everyone. People tired me out and my previous love for kids changed because they were too energetic for me to keep up with. I had no hobbies, no life whatsoever. I was unable to keep up with G-PACT and had no passion to see it continue or succeed. I had stopped going to church years before this because I was too tired to ever get out of bed that early and didn't make it a priority to try. I never went out for fun. I had no energy and was very depressed. I was very malnourished at 62 pounds and nearing the end of my life at that point.
Now I am able to drive most of the time, can care for myself physically, volunteer with kids at LCBC (my church) and in the office during the week. I have a Life Group from church and have developed some very close friendships. My passion for G-PACT is so extreme and my desire to see its success and help find a cure for DTP is phenomenal, even stronger than the early years when it was founded. I want to fight for everyone, whether I will ever personally physically benefit from it as a result or not.
I love people so much. I love everyone and value every single relationship I have. Whether I know someone in person or just through the internet, I love you and want to help you and get to know you better. I don't care whether we agree politically, religiously, or what your background is...it doesn't matter. Even if you cut me down or don't agree with some of the things I do or the way I think, it doesn't matter. I care about you, perhaps sometimes too much that it really affects me! Your life matters to me. Your hurt, pain, and burdens, no matter what they may be, are important to me.
I absolutely love kids. It hurts when I want to get down on the floor and wrestle and tangle, but just don't have the strength or energy and have to to be careful to not break any bones! But I often ignore that and find myself in a "pillow sandwich" anyway! I push myself to the limits because I want to make up for so many lost years in bed. I love it. I love being busy. I love waking up in the morning with a lot to do! I love working with people to fight DTP and I love the activities, opportunities I have had, and the fabulous people I have met in the past five years that I wouldn't have if not given a second chance!
So, since March 9, 2005 one of the biggest things for me that I have been able to experience is life in a new way...with new vision, new perspective, new passion, new love, renewed hope, and a totally changed attitude towards the importance of life and living it out to the absolute fullest. My love for others has changed. I want to give back to everyone however I can since I will never be able to give back what was given to me! I want to utilize the gift I have been given to the maximum by giving and improving life for others through any means possible...whether a cure for DTP, a relief of a burden, hope, a joke to make you laugh, a card or gift to make you smile, or doing a simple task to help lighten your load!
Friday, February 4, 2011
So, what's new with me? The latest...
Just an update on me since I have my Pittsburgh plans made-
I’m going to UPMC on Sunday Feb. 20. Will have biopsy 7 AM Monday morning, the 21st, then tx clinic. That afternoon, about 2:00, I am scheduled to go to CHP (Children’s Hospital of Pittsburgh) to see genetics and begin the process of looking for mitochondrial disease. That’s an hour and a half appointment. Tuesday I see my bone doctor for my annual appointment (I have osteoporosis and get annual IV infusions of Reclast. I failed on things like Fosamax), and then on Wednesday I see my neurologist, Dr. Sasha, for my neuropathy pain. He’s the same guy I see for my migraines.
The genetic testing should give them an idea in where to begin the mito testing. I’ll see the mito doc eventually, but not sure if it will be during the next trip or sometime later after some of the genetic testing results come back.
My biggest issue lately is severe back pain. I had x-rays last week because I am at risk for compression fractures due to osteoporosis. Those were negative, but I have a massive muscle spasm in the left side of my back. This could be dystonia (part of mito too) or something else. It also affects my hands and feet because they spasm, my hands become claws I can’t open or close and have severe pain from that (literally scream when it happens), my fingers get stuck, and my toes and feet get cramps and get stuck too. It could even explain my history of TMJ syndrome growing up, and why I have no gag reflex at all and have difficulty swallowing. I’ve had the problem off and on for years, but it’s markedly worse the past four weeks and gets worse every winter. Dystonia is impacted by video game playing, even just minutes of it, stirring things, repetitive activities, driving, even walking with my cane and holding onto it causes spasms and pain, typing, holding things, and makes me prone to dropping things like my keys, pens, and things like that. Affects my fine motor skills. You know I can’t hold on to anything and am always dropping things! It contributes to my clutziness!
They increased one of my muscle relaxers, but I’m limited to how high I can go because an increase in those also slows down the gut, not to mention makes me so sleepy. Narcotics also slow down the gut and can lead to obstructions. So, I am playing a balancing act on how much back pain relief I want vs. how much I want to risk obstructions and deal with the nausea and pain from my gut not digesting. My back and gut go hand in hand…when one acts up, often the other does too. The muscles are tied together closely and when my gut doesn’t move (as it hasn’t been much) it puts pressure on my back and increases the pain. Because I also have some scoliosis in the lower portion of my spine from the osteo, the spasms seem to be putting pressure there and causing a pinch in my sciatic nerve and causing pain down my leg on the left side. Because of the scoliosis, sometimes my hip pops out of joint, I have a lot of pain, but twist and pop it back into place and I’m fine. I’ve had this for at least 10 years.
I’m not sure why my gut isn’t moving as I have increased some of my motility agents and I’m still getting clogged up. I also switched tube formulas to something thinner (also with fewer cals, unfortunately) and it’s still not moving through very well. I can go down lower in my formula, but have been adding water instead. Just takes longer to go infuse every night. I’ve been like this for a month too.
I’m also exhausted. Tired all the time, and we can’t seem to get that under control. I have an occasional, somewhat energy day, but most days are tough for me to have much energy. You know how I am, I push through it anyway and am still active, but I only wish I had more energy to do things more efficiently and do things that require more energy. It also impacts my ability to concentrate and my confusion levels. I keep falling asleep in the middle of doing things…typing on the computer, talking on the phone, even in the middle of taking meds...sometimes I’ll wake up a few hours later and they are laying out all around me because I fell asleep in the middle of trying to take them!
The results of my cardio appointment a few weeks ago- my QT interval was fine that day and she doesn’t want to test for POTS right now since I am going for mito testing, but did notice the murmur (I’ve had this for years too, nobody knows exactly why), and she noticed symptoms of POTS when I got up from the chair and on to the table (my BP went way down and my heart rate when way up suddenly). She just told me how she’d treat it, but the testing is pretty miserable and she didn’t want to put me through it unless I start passing out all the time. Also, suggested implanting a loop recorder which would stay in for a year and record any abnormal cardiac activity, but because of my low immuno-supression and history of infections with foreign devices, even before the transplant, it’s too risky to pursue unless I pass out a lot or my symptoms get a lot worse. So, I’m keeping an eye on things and see her again in six months.
I’m scheduled for someone from CILO to come for an in-home eval on March 2 to determine services I need for assistance at home with things like laundry, getting in the shower safely, getting my bed changed, local errands if I can’t get out some day, fixing food for me (I tend to warm up non-healthy stuff rather than eat eggs or something because I am too tired), and things like that. They are really backed up there so it's taking weeks to get in for the eval...then another several weeks before they can start working.
And yep, in spite of it, I am still planning to go to DDNC. I have NO idea how I’m going to make it this year, but this event is such a highlight of my year and SSSOOO important. I’m going by train again. In on Friday night for G-PACT events on Saturday, the DDNC conference Sunday, lobbying Monday, and I’m staying there to travel home until Tuesday because it did NOT work well to try to travel home the day of lobbying last year! I was just too tired and need a night to rest. I’m looking forward to the night to relax after that anyway like I did the first year.
I’m debating on taking a friend with me to help me get around, so if you know of someone who would like a free trip to DC March 4-8 to be my assistant, please pass the info along! We’ll cover all expenses…the train ride, the hotel (staying in nice hotel, the Hyatt Regency on New Jersey Ave). I need someone to help me get my luggage from the train station to hotel and push me in a wheelchair around the city when we sightsee on Sat and lobby on Monday.
G-PACT is going very well…there is so much going on I’d have to write another book to get into it, but we knocked the socks off of a company we spoke with today on everything we are doing so I am really excited. A great group has come together and are working really hard to get things done. Just keep following our fan page on FB if you are a member to keep track…and that only scratches the surface. Looking forward to a new site coming out in a couple of weeks which is really gonna take us far.
Basically, I am just praying for some relief from something. It would be a huge relief for me to finally have some ANSWERS to connect all of my problems so I am kind of “hoping” for a mito diagnosis. It’s not a good diagnosis really with not an excellent prognosis long term, but there are some things they COULD do to help me some and stop some things that may be harming me now. It could slow down the progression. The way I see it, I am developing more and more issues as it is whether I have a name for it or not. At this point I just want a name for it and a way to treat it so that I am as comfortable as I can possibly be as I continue into the future and doing the things that I do for as long as I possibly can. I know Dr. Kareem put me in the “palliative care” category over a year ago re: the gut and overall issues, and I want to make sure I cover all basis in that now…not just the gut, but that we can address everything possible.
Thanks for your continued prayers and support. Been kind of frustrated on the health end lately, and just glad I have good G-PACT stuff and other enjoyable things to balance that out and keep me going. Too much good stuff there for me to give up or stop. I’m just really excited about the progress of all that!!!
I’m going to UPMC on Sunday Feb. 20. Will have biopsy 7 AM Monday morning, the 21st, then tx clinic. That afternoon, about 2:00, I am scheduled to go to CHP (Children’s Hospital of Pittsburgh) to see genetics and begin the process of looking for mitochondrial disease. That’s an hour and a half appointment. Tuesday I see my bone doctor for my annual appointment (I have osteoporosis and get annual IV infusions of Reclast. I failed on things like Fosamax), and then on Wednesday I see my neurologist, Dr. Sasha, for my neuropathy pain. He’s the same guy I see for my migraines.
The genetic testing should give them an idea in where to begin the mito testing. I’ll see the mito doc eventually, but not sure if it will be during the next trip or sometime later after some of the genetic testing results come back.
My biggest issue lately is severe back pain. I had x-rays last week because I am at risk for compression fractures due to osteoporosis. Those were negative, but I have a massive muscle spasm in the left side of my back. This could be dystonia (part of mito too) or something else. It also affects my hands and feet because they spasm, my hands become claws I can’t open or close and have severe pain from that (literally scream when it happens), my fingers get stuck, and my toes and feet get cramps and get stuck too. It could even explain my history of TMJ syndrome growing up, and why I have no gag reflex at all and have difficulty swallowing. I’ve had the problem off and on for years, but it’s markedly worse the past four weeks and gets worse every winter. Dystonia is impacted by video game playing, even just minutes of it, stirring things, repetitive activities, driving, even walking with my cane and holding onto it causes spasms and pain, typing, holding things, and makes me prone to dropping things like my keys, pens, and things like that. Affects my fine motor skills. You know I can’t hold on to anything and am always dropping things! It contributes to my clutziness!
They increased one of my muscle relaxers, but I’m limited to how high I can go because an increase in those also slows down the gut, not to mention makes me so sleepy. Narcotics also slow down the gut and can lead to obstructions. So, I am playing a balancing act on how much back pain relief I want vs. how much I want to risk obstructions and deal with the nausea and pain from my gut not digesting. My back and gut go hand in hand…when one acts up, often the other does too. The muscles are tied together closely and when my gut doesn’t move (as it hasn’t been much) it puts pressure on my back and increases the pain. Because I also have some scoliosis in the lower portion of my spine from the osteo, the spasms seem to be putting pressure there and causing a pinch in my sciatic nerve and causing pain down my leg on the left side. Because of the scoliosis, sometimes my hip pops out of joint, I have a lot of pain, but twist and pop it back into place and I’m fine. I’ve had this for at least 10 years.
I’m not sure why my gut isn’t moving as I have increased some of my motility agents and I’m still getting clogged up. I also switched tube formulas to something thinner (also with fewer cals, unfortunately) and it’s still not moving through very well. I can go down lower in my formula, but have been adding water instead. Just takes longer to go infuse every night. I’ve been like this for a month too.
I’m also exhausted. Tired all the time, and we can’t seem to get that under control. I have an occasional, somewhat energy day, but most days are tough for me to have much energy. You know how I am, I push through it anyway and am still active, but I only wish I had more energy to do things more efficiently and do things that require more energy. It also impacts my ability to concentrate and my confusion levels. I keep falling asleep in the middle of doing things…typing on the computer, talking on the phone, even in the middle of taking meds...sometimes I’ll wake up a few hours later and they are laying out all around me because I fell asleep in the middle of trying to take them!
The results of my cardio appointment a few weeks ago- my QT interval was fine that day and she doesn’t want to test for POTS right now since I am going for mito testing, but did notice the murmur (I’ve had this for years too, nobody knows exactly why), and she noticed symptoms of POTS when I got up from the chair and on to the table (my BP went way down and my heart rate when way up suddenly). She just told me how she’d treat it, but the testing is pretty miserable and she didn’t want to put me through it unless I start passing out all the time. Also, suggested implanting a loop recorder which would stay in for a year and record any abnormal cardiac activity, but because of my low immuno-supression and history of infections with foreign devices, even before the transplant, it’s too risky to pursue unless I pass out a lot or my symptoms get a lot worse. So, I’m keeping an eye on things and see her again in six months.
I’m scheduled for someone from CILO to come for an in-home eval on March 2 to determine services I need for assistance at home with things like laundry, getting in the shower safely, getting my bed changed, local errands if I can’t get out some day, fixing food for me (I tend to warm up non-healthy stuff rather than eat eggs or something because I am too tired), and things like that. They are really backed up there so it's taking weeks to get in for the eval...then another several weeks before they can start working.
And yep, in spite of it, I am still planning to go to DDNC. I have NO idea how I’m going to make it this year, but this event is such a highlight of my year and SSSOOO important. I’m going by train again. In on Friday night for G-PACT events on Saturday, the DDNC conference Sunday, lobbying Monday, and I’m staying there to travel home until Tuesday because it did NOT work well to try to travel home the day of lobbying last year! I was just too tired and need a night to rest. I’m looking forward to the night to relax after that anyway like I did the first year.
I’m debating on taking a friend with me to help me get around, so if you know of someone who would like a free trip to DC March 4-8 to be my assistant, please pass the info along! We’ll cover all expenses…the train ride, the hotel (staying in nice hotel, the Hyatt Regency on New Jersey Ave). I need someone to help me get my luggage from the train station to hotel and push me in a wheelchair around the city when we sightsee on Sat and lobby on Monday.
G-PACT is going very well…there is so much going on I’d have to write another book to get into it, but we knocked the socks off of a company we spoke with today on everything we are doing so I am really excited. A great group has come together and are working really hard to get things done. Just keep following our fan page on FB if you are a member to keep track…and that only scratches the surface. Looking forward to a new site coming out in a couple of weeks which is really gonna take us far.
Basically, I am just praying for some relief from something. It would be a huge relief for me to finally have some ANSWERS to connect all of my problems so I am kind of “hoping” for a mito diagnosis. It’s not a good diagnosis really with not an excellent prognosis long term, but there are some things they COULD do to help me some and stop some things that may be harming me now. It could slow down the progression. The way I see it, I am developing more and more issues as it is whether I have a name for it or not. At this point I just want a name for it and a way to treat it so that I am as comfortable as I can possibly be as I continue into the future and doing the things that I do for as long as I possibly can. I know Dr. Kareem put me in the “palliative care” category over a year ago re: the gut and overall issues, and I want to make sure I cover all basis in that now…not just the gut, but that we can address everything possible.
Thanks for your continued prayers and support. Been kind of frustrated on the health end lately, and just glad I have good G-PACT stuff and other enjoyable things to balance that out and keep me going. Too much good stuff there for me to give up or stop. I’m just really excited about the progress of all that!!!
Wednesday, February 2, 2011
My Steelers: Goin' to the Superbowl to Win!
Goin' to the Superbowl to Win
(to the tune of "Chapel of Love)
By: Carissa Haston
Jets crashed here,
when in they flew,
(whoa whoa whoa),
where's our ring,
which we are due,
Sunday's the day,
our pride comes through,
and we'll always win more and more and more,
Because we're
Goin' to the Superbowl and
Gonna get number 7,
Goin' to the Superbowl and
Gonna get number 7,
Gee, I really love you Steelers,
Gonna get number 7,
Goin' to the Superbowl to win!
Cheese will string,
Black/gold will shine,
(whoa whoa whoa),
Drinks will fizz and
Cheese will whine,
We'll cheer until,
Cheese has no time,
and they have no chance to win it anymore! Because we're
Goin' to the Superbowl and
Gonna get number 7,
Goin' to the Superbowl and
Gonna get number 7,
Gee, I really love you Steelers,
Gonna get number 7,
Goin' to the Superbowl to win!
(to the tune of "Chapel of Love)
By: Carissa Haston
Jets crashed here,
when in they flew,
(whoa whoa whoa),
where's our ring,
which we are due,
Sunday's the day,
our pride comes through,
and we'll always win more and more and more,
Because we're
Goin' to the Superbowl and
Gonna get number 7,
Goin' to the Superbowl and
Gonna get number 7,
Gee, I really love you Steelers,
Gonna get number 7,
Goin' to the Superbowl to win!
Cheese will string,
Black/gold will shine,
(whoa whoa whoa),
Drinks will fizz and
Cheese will whine,
We'll cheer until,
Cheese has no time,
and they have no chance to win it anymore! Because we're
Goin' to the Superbowl and
Gonna get number 7,
Goin' to the Superbowl and
Gonna get number 7,
Gee, I really love you Steelers,
Gonna get number 7,
Goin' to the Superbowl to win!
Sunday, December 5, 2010
DTP Fight
I'm going to stick to my bathroom sink! The Phenergan spills may drive me to drink! It's icky, it's sticky, it happened last night. Not once, not twice, we got in a fight! The newest phase in Carissa's Clutziness Craze, is these phenergan spills and dropping of pills! All over my bed, all med times I dread, 'cuz I end up messy, good thing I'm not dressy! It goes down my tube, like my Jeep drinks his lube! The PJ's were clean, but now they are green, and my tube has leaked, the gut has just freaked!
My hands they shake, my head it aches, my feet are sore, when they hit the floor. My stomach hurts, my heart it flirts, my chest is tight, fuzzy is my sight. My ears they ring, my brain won't sing, I'm in a fog, like I'm near a bog. I'm really dizzy, my hair is frizzy. it always falls out, and there is no doubt, it clogs up the tub, so rub a dub dub! I can't stay awake, many naps I must take. Was falling asleep, while driving the Jeep. It can be quite scary, I should be more wary. But it's hard to know, up and down I go! Sometimes I feel well, then later can tell, that my body is tired and not quite as wired, as I thought it would be, when I left to roam free.
Can you understand, that in DTP land, we are really tough, with all this stuff? But in spite of our plight, we still have to fight, just to get a look, or the term in a book! And all we've wanted, it not to be taunted, and told we are crazy, or just plain lazy! We are seeking a cure, we want to be sure, that the future is bright, and the gut's no fright. No one else to starve, and we all can carve, and enjoy the turkey, and even beef jerkey!
You just need to know, that we write and show, and we share our pain, to get through the rain. This is really tough, there is no fluff. It comes down to foods, which affects our moods. Since we can't eat, even cookies or meat, we are left behind, and long to rewind, to better days, when we had full trays, not a tube or a line, with a smile and "I'm fine."
We don't ask for much, but a healing touch. Will you help us today, so soon we can say? That because we've endured, we've finally been cured. We will eat again, we will definitely win!
I posted this note, so I could devote, some special place, to my personal space. Millions have suffered, and our voices been buffered. We need to be clear, to everyone near, and those far away, that we need them to say. DTP kills, and piles up bills. And I have a friend, who has suffered no end. Do you really care? Will you take the dare? By helping us fight, there is hope in sight!
My hands they shake, my head it aches, my feet are sore, when they hit the floor. My stomach hurts, my heart it flirts, my chest is tight, fuzzy is my sight. My ears they ring, my brain won't sing, I'm in a fog, like I'm near a bog. I'm really dizzy, my hair is frizzy. it always falls out, and there is no doubt, it clogs up the tub, so rub a dub dub! I can't stay awake, many naps I must take. Was falling asleep, while driving the Jeep. It can be quite scary, I should be more wary. But it's hard to know, up and down I go! Sometimes I feel well, then later can tell, that my body is tired and not quite as wired, as I thought it would be, when I left to roam free.
Can you understand, that in DTP land, we are really tough, with all this stuff? But in spite of our plight, we still have to fight, just to get a look, or the term in a book! And all we've wanted, it not to be taunted, and told we are crazy, or just plain lazy! We are seeking a cure, we want to be sure, that the future is bright, and the gut's no fright. No one else to starve, and we all can carve, and enjoy the turkey, and even beef jerkey!
You just need to know, that we write and show, and we share our pain, to get through the rain. This is really tough, there is no fluff. It comes down to foods, which affects our moods. Since we can't eat, even cookies or meat, we are left behind, and long to rewind, to better days, when we had full trays, not a tube or a line, with a smile and "I'm fine."
We don't ask for much, but a healing touch. Will you help us today, so soon we can say? That because we've endured, we've finally been cured. We will eat again, we will definitely win!
I posted this note, so I could devote, some special place, to my personal space. Millions have suffered, and our voices been buffered. We need to be clear, to everyone near, and those far away, that we need them to say. DTP kills, and piles up bills. And I have a friend, who has suffered no end. Do you really care? Will you take the dare? By helping us fight, there is hope in sight!
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