Tuesday, June 19, 2012
Just a quick share: In my last blog I mentioned about my cousin making a tie out of an awful fake fur fabric to enter into an ugly tie contest. I got an email today to call and find out if they won or not. Well, they estimated about 80 ties were turned in and my relatives are going to be getting a dozen free donuts each month for the next year! Yep, they won! I'm taking a little credit, as it was my idea for her to make one. She did the work of finding the fabric, cutting it, and quickly stitching two pieces together to make it long enough. So I'll claim 10% of the credit. hahaha So when I go to visit I think I'll be risking some belly pain to enjoy some donuts!
Side note: It appears that the meds the doc put me on to try to stop my status migranosus is causing an allergic reaction. GAH! So at 2am I was leaving a voicemail for his nurse. She said to stop it (I've only been on it 4 days) and instead take a bunch of melatonin and some benadryl. I'm not sure it'll work, but I'm giving it a try. I took them about a half hour ago and I had a crazy exhausting day, so I'm hoping I'll be passing out soon. I also got a massage today and she really dug in to work out some of the horrific knots I always have, so maybe between everything I might actually sleep tonight. (Considering how afraid I am right now for my financial situation, it's not guaranteed no matter what I do!)
Sunday, June 17, 2012
Because my last blog about my new diagnoses was so long, I didn't tell about anything else that happened on the trip, or about the upcoming changes in my TPN. Thus, I'm writing this blog to talk about all of that.
I was up Sunday night until the sun started coming up Monday morning (around 430 am). I was getting things ready and packing for the trip to Milwaukee. I got about 3 hours of sleep before I had to wake up to make phone calls and get ready for my father to come. He got here just a little before the disability transport picked us up to go the airstrip. Just like last time, we had donated free flights in small planes (4-5 seats) to get there and back. We took off about a half hour early (since everyone was there early, why not?) and just like last time went through a cold front. This time I was able to take a compazine before the flight, so I wasn't nearly as sick. They also flew a little higher than they normally would've, to make it easier on me.
Seeing my aunt, uncle, and cousins is actually good for me. While I tend to overly stress myself because I don't want to be a bother or appear overly lazy, my aunt is a very positive person and my cousins are young and naive enough that I can teach them things and give them information they wouldn't normally come across - such as what it's like to live with a serious medical condition and that being 'ill' is not as scary as their parents think it is. They don't get to watch much tv, which is good except that they miss out on a lot of social knowledge. The two kids (15yo boy and 12yo girl) are constantly annoying each other, moreso now that school is out and they spend most of their time together. They're in a lot of activities but they still have time to drive each other nuts. The girl has a great imagination, but I'm of the opinion that it's not cultivated enough by her parents who don't have good imaginations. She spent at least 2 hours telling me this story that is a 'red door, blue door story' (as she called it) where during the story she gives colors of doors and when you choose a color she creates something in the room behind the door based on that color. Quite an imagination (albeit inappropriate once in a while), yet when it came time to pick out a tie to enter in an 'ugly tie' contest (to try to win free donuts) she didn't think outside the box. I suggested she make one (my uncle protested at that) and she found some fake fur fabric, cut it to the size/shape of a tie, and turned that in. They have a darn good chance to win, if I do say so! haha
Since I've been able to eat a little more, I brought along some small tv dinner style lunches (compleats) to have for dinner. It was easy for me to make, so as they were finishing making dinner I popped mine in the microwave and was able to eat dinner with them, which was nice. I also was able to have a little more energy with which to play with the kids. The boy wanted to buy a bunch of lego pieces and his dad kept saying to look through the huge pile of pieces he already has to find them. He went into the living room but instead of looking at the pile he was watching tv. So I sat down and helped him look, and when he'd get distracted I'd pull him back to it. We found several of the pieces he was looking for. The next day after my appointment I got the girl into several games of Yahtzee, and I gave her a few tips for counting up the dice that might help her when it comes to math (she says she's not good at it). By the end of the 3rd game she was getting way too distracted, so we haltingly got one more game in before she lost all interest. Later that night we all watched John Carter together (not a good movie) and cracked jokes about it.
On the last day before we flew out, the kids were really driving each other nuts, and after I got up (I slept until 10 then dozed in and out while I was making phone calls to try to deal with our plane being delayed) they really started running around like crazy. My father was attempting to ignore them (when he disciplines he let's kids get away with everything until he can't stand it anymore and then he goes off the deep end) but after I came downstairs I realized they needed to expel some energy in a healthier way than running around chasing each other. So I stepped up and got them involved in playing wii bowling. I wanted to play and my father needed to stop falling asleep in the chair, so I had one of the kids play one of us, then switched off. This kept the kids separated enough but everyone interested. I think it worked well! I got some movement in, as did my father (who keeps thinking he's so fit and healthy while he spends most of his days playing computer games and napping) and no one was fighting. When my uncle got home from work he got another of my aunts on skype (she lives in CA) so I could tell her about my appointment, then he challenged my father to some bowling. Soon after it was time to leave for the airfield.
I was given a different pickup time for the flight back than what it should've been, so it messed up most of my evening. I now know to contact that pilot directly to set up the flights, as it's his job to schedule the flights and the other guy tends to wait until the last minute to notify people about the times. Because it was later than expected, I had to call the disability transport company several times trying to change the pickup time. Through perseverance and an annoying tendency to bug them, I was able to get it figured out, mostly by explaining that it was a private donated flight that I had no control over. They took pity on me. But it was 10 pm before I got home. Still, it's lots better than flying normally, going through security (which sucks extra because I'm on TPN!), and sitting in airports for hours just waiting.
Since I've been back, I've been told they've denied my long term disability (which I've been waiting for 2 months for this decision) so now I have to appeal it, the county is trying to get a crazy amount of info from me (that's going to be difficult to figure out exactly what they want and how I can provide it) to even consider giving me aid, and I've realized that the vitamins that the doctor wants me on are crazy expensive - especially at the heightened doses, as is the blood pressure monitor, extra firm thigh high compression stockings that I'm having difficulty finding, and finding where I can order sodium tablets was difficult and I'm hoping they won't be insanely expensive too. I had to call to withdraw one of my 401(k) accounts because I don't have enough money to pay my bills through the end of the month, and with no income I'm up a creek. The penalties and taxes are going to cut it down by at least 1/3rd, but I'm getting desperate. I'm also starting to think about what things I can sell for little bits of money. Yes, I'm seriously worried but I'm trying not to dwell on it, as that will make everything worse and nothing better.
Some good news is that now that I'm at my goal weight (BMI around 21), we're dropping my TPN down from 7 days a week to 4. I thought the calories was going to drop from 1500 per bag to 1000, but they chose to not do that. I'll also stay on a 24 hour infusion (it's not being sped up) but there will be a 1 hour taper up and taper down period to help my body handle the blood sugar changes that occur. While this means I should soon be weaned off the TPN (and I can get this annoying PICC out of my arm so it can stop bothering my heart!), I'll be relying more on my digestive system and hoping it rises to the challenge. If I can't maintain my weight and start losing pounds again, then it's expected that I will have the J-tube placed.
I mentioned before how I was hoping to start doing some very mild exercising. A blog yesterday got me thinking about checking my library for some exercise DVDs, specifically for doing workouts tailored to those who are disabled. I found one I wanted to try, so I picked it up today. It is a half hour chair pilates workout and while it's meant to be gentle and easy, it got my heart up a bit and wore me out. (I could imagine a room full of elderly people doing the exercises.) The hard part is that I can't wear my TPN backpack while sitting, so I had to hook it to the back of the chair and try to drape the line where it wouldn't be a problem. Not easy, but accomplished! So I'm going to keep trying and working at it. I'm still trying to do some pushups, crunches, and bicep curls, but I'm not ready to combine the workouts. The doctor who just gave me the new diagnoses wants me to be doing PT in a pool, but with the PICC the risk of infection is extremely high. So that will have to be delayed until later. So I'll stick with what I'm doing for now.
The whole high-sodium diet is proving to be quite difficult. I have yet to hit 4000 mg. When I'm not on the TPN that will be 1000 mg less that I'll be getting, so I'm hoping the sodium pills will help me get up to where I need to be without making me sick! I've tried mixing in a little salt to different things and it is GROSS! Both sides of my family have high blood pressure, high cholesterol, and often heart disease, so salt was never added to meals. Heck, I can taste the salt in light chocolate ice cream or bread!
This blog has gotten long also, so I'll stop here. I want to thank all of my wonderful sparkfriends for their support and concern. I don't always get to thank everyone personally, so I hope you accept my thanks here. I read everything that's said and sparkmailed to me, even if I don't respond. The support I get here is integral in my continued fight against the overpowering conditions I have. I couldn't make it through all of this without all of you!
Friday, June 15, 2012
Warning: This blog could become a little technical, but I'm going to try to make it as easy to understand as possible. I just started a little research on these new diagnoses in just the last few hours, so I'm still learning. As usual, my diagnoses tend to be difficult to understand and overlap considerably, so that it's hard to know what is what. I'm going to do my best so that anyone who reads this will have an idea of my situation, but please know that I'm willing to answer questions whenever I can and share my knowledge. I'll never know when that knowledge could help someone else or even save a life (it has happened before).
To catch up anyone who hasn't been following my story: I have several medical conditions, many of which are rare, not well understood, incurable, and/or debilitating. (If you've been following my story awhile, feel free to jump to the asterisks.) They include:
Gastroparesis - This is a partially paralyzed digestive system, which has caused severe weight loss. I'm on IV nutrition (TPN) to supplement what I can eat by mouth and get me above the cutoff for being underweight. It is incurable, few acceptable treatments exist, it's not well understood or unknown by many in the medical field, and affects 1 in 25 people in the US in varying degrees from complete paralysis (unable to eat anything) to very mild (eating a low fat, low fiber diet makes it manageable). I was diagnosed 2 years ago, but now we see I've had symptoms since I was an infant. The cause of mine is likely the other conditions I have. The oddest thing is, I digest food much easier when I'm laying than when I'm standing up. (For those who understand, my emptying study showed food still in my esophagus at 2 hours and 36+% left after 4 hours, when it should be under 10% remaining.)
Ehlers Danlos - This is a genetic condition which makes it incurable. There are many versions, but they all cause problems with the connective tissues in the body. Most often, the joints are affected, causing them to be hypermobile. You've seen a contortionist, right? You must have Ehlers Danlos or a similar condition to do that. Though they also have a version where their skin is hyperelastic, allowing it to stretch easily. Some versions also affect the connective tissue that holds the organs in place, and sometimes this can cause organs or blood vessels to rupture suddenly. In my version (type III, hypermobility type for those who know), my joints are hypermobile and it seems my organs are not held in place as well as they should be, but I don't have the skin elasticity or an increased risk of organ rupture. I can do some funky bending though!
Reactive Hypoglycemia - While diabetes is an increase in blood sugars over a long period of time, hypoglycemia is a drop in blood sugars over a sustained period of time. Reactive Hypoglycemia is that when I eat food, the insulin and the sugars from the food are not released in equal quantities, so sometimes my blood sugars can drop to the 30s or 40s - which for most people is incredibly dangerous and even can cause a coma. I show no outward signs though, so it appears my body has learned to 'handle it'. Most likely this is due to the Gastroparesis causing food to take an extra long time to digest.
GERD - This is a common condition also known as acid reflux. It is likely caused by the Gastroparesis and other conditions. It's currently not well controlled by medication, so I'm assuming more drastic steps (such as surgery) may be needed in the future.
Eosinophilic Esophagitis - The name of this condition explains what it is, but most doctors still can't figure it out. It means problem with white blood cells (eosinophils) causing problems in the esophagus - basically white blood cells line the inside of my esophagus (as a defense mechanism) and prevent it from working properly. It seems to be triggered whenever my GERD becomes especially bad (having a pH of 1.6 in the esophagus tends to cause problems!) so as long as that is moderately under control the EE doesn't flare. It is treatable over several weeks, but not overly preventable. Other versions of the condition exist which are much worse, so I'm lucky mine has only flared twice.
I also have some mental health conditions I won't get into so much, because they're mainly symptoms of a messed up family and all the other physical problems I have going untreated for months, years, decades, or in some cases my entire life. (You tend to get depressed when you're malnourished, right?)
Last month I flew to Milwaukee for some autonomic nervous system testing to check for forms of Dysautonomia (malfunctions in the autonomic nervous system). On Tuesday I got the results. I was dumbfounded by some of them, as I didn't expect this. It will take me a while to research all of these and try to figure out how they all fit together in me. But getting the diagnoses is HUGE, as getting them is the first step to treating them.
I've mentioned on here several times that the doctors suspected I had POTS (Postural Orthostatic Tachycardia Syndrome). This doctor gave me a diagnosis that appears to be similar, but not quite as constant. It's called Orthostatic Intolerance. Basically, in times of high stress (physical or mental) or when other problems flare up, my body can't handle changes, so when I change positions (laying, sitting, standing, walking) my body can't handle it. The blood pressure to my head falls and I can become sick, dizzy, or even lose consciousness. I've had these issues for around 18 years now (by at least age 13) so I've had to learn how to handle it when it happens. It's gotten significantly worse over the past few years though, so I've had to be extremely careful and pay close attention to the signals that my body is freaking out. Sometimes that means stopping and sitting or laying on the floor because I know I'm about to pass out. The condition is probably due to my other conditions, as it is often a secondary diagnosis.
Next, there's Complex and Atypical Migraine, which basically means migraines that are more than just headaches - they affect my body drastically. In addition, I have Status Migranosus, which means I've had a continual and nearly constant migraine for more than a few days. It's been at least 2 years, but considering how long I've had the symptoms, it could be as long as 15-20 years! Think about that - a migraine that never eases up for more than 4 hours at a time for day after day after day for years. Can you see why I learned to ignore the pain whenever possible and had to figure out how to live with it? The differences with Status Migranosus is that you can have the physiological symptoms of a migraine without feeling the pain. I'm assuming the body can't handle the pain for that long of time, so it starts to dull the nerve signals. The good news is the doctor believes he can treat this, though it can always return. I'm going to be on several medications and if they don't clear it up in a few weeks, then I'll be admitted to the hospital for 4 days to get an intense medication that should wipe it out. The hope is once the migraine is cleared up that my other conditions will calm down a bit, so I can begin to attempt to function again.
The most shocking new diagnosis is Fibromyalgia. Sure, I have had physical pain in my body every day since I was in late grade school, but I guess I never thought of it as being something the doctors would ever diagnose. After the Ehlers Danlos diagnosis came in, I figured the pain was associated with my joint's affinity for dislocating and I've been told I'll have to just accept the pain and live with it. Well, this doctor diagnosed it as Fibromyalgia and he's putting me on a few supplements to try to ease it. (For those who understand, of the 18 places checked, 11 need to be problematic for the diagnosis - I had 15, some of which brought tears to my eyes instantly.) I've learned to live with pain every moment of my life, and because of the migraines he wants me to never again take any of the high intensity painkillers like Percocet - which is okay because I rarely ever used them since they rarely ever worked. Good thing I've learned breathing techniques to dull my pain response! Turns out my hypersensitivity within my veins and nerves is probably part of the Fibromyalgia.
In addition to the Ehlers Danlos and Hypermobility Syndrome (basically the same thing as far as I understand), he's diagnosed me with an unspecified Mitochondrial Disorder. Mitochondria are basically the 'power plants' of a cell, which basically powers your body. To have a condition where those don't work properly can cause you to be severely fatigued and exhausted at all times and make it difficult for your body to work. It's a genetic condition, so it's incurable, but I'm hoping it is somehow treatable.
So what's next? This doctor wants me to see an Endocrinologist and Gastroenterologist at his hospital and the Genetics department in the Children's hospital next door to get their input and maybe come up with more specific diagnoses (specifically the Mitochondrial Disorder) and some better/additional treatments. I'm waiting for phone calls right now to set them up. He's also put me on 2 new medications and wants me to start taking 2 new supplements to try to treat these new conditions. I need to figure out where to buy some extra firm compression stockings (40-50 mmHg, thigh high) to help push the blood out of my feet and back up my body, and get an automatic blood pressure cuff to take my BP every day to monitor the changes and hopefully see improvements. He's put me on a high sodium diet (4,000 mg/day!) to try to increase my fluid retention and boost my blood volume. This is proving difficult, as I can't eat many foods that are high in sodium because they're often also high in fat (a no-no due to my Gastroparesis). I was told to drink Gatorade (which I'm already doing) and mix in 1 tsp of salt - I put in 1/4 tsp today and every time I sip it I want to throw up because it's so gross! (When you grow up in a family where both your parents and many extended family members have high cholesterol, high blood pressure, and often heart disease, you learn to hate salt.) Luckily I get about 1300 ml of IV fluids every day which includes nearly 1000 mg of sodium. I track the calories and now the sodium from my TPN in my nutrition tracker, so that will help. Also, he wants me to continue the small amount of exercise I've been attempting, until I am weaned off the TPN and the PICC is removed, and then he wants me doing physical therapy in water.
After the appointment I had the most blood I've ever had drawn in 1 sitting: 9 tubes! I think we estimated it was nearly 20 ml, which isn't a lot in the big picture, but WOW! I asked if she was going to leave any left. haha (Today my home nurse came for my weekly TPN blood tests and took another 5 or 6 tubes.) I got a phone call this morning saying they wanted another highly specialized blood test done here in MN and have it sent to them, so I've got to get that set up. In addition to the 3 additional specialists, I'll be seeing this same doctor again for a follow up in October, so I'm assuming I'll have another 2-3 trips to Milwaukee by the end of the year, if not more. I'm so thankful for the donated free flights I'm getting to go there, as well as being able to stay with my aunt, uncle, and cousins.
So that's the news from my trip to Milwaukee this week. If you've made it through this entire blog in one sitting, WOW! I know it is a ton for anyone to take in, so I'm thankful you've given me your attention for this long. As I said earlier, if anyone has questions about any of this, please let me know. I'm happy to share whatever I know. If anyone else who has these conditions reads this and would like to share their knowledge, please do so. I've got a lot of research to do on all of this (I've estimated I've spent at least 300 hours researching the conditions I was already diagnosed with), so I can better understand it all and try to figure out how I can make things easier on myself. But I must be up for the challenge, because I'M NOT GIVING UP!
Saturday, June 09, 2012
I want to thank everyone who participated in my vitural pool party! There's no such thing as late to this party - that's the beauty of it being virtual! You get to participate whenever it works for you! I hope each of you took to heart the need to celebrate your accomplishments and be PROUD of all you've done! Learn from mistakes and celebrate successes and you'll go far.
Now that I'm nearly at goal weight I'm trying to add just a little exercise. This way, if I start dropping weight again I'll have a little muscle again to hopefully slow the process. Last night I pulled out my pilates mat, wiped it down good, and did 2 sets of 5 modified pushups, 10 crunches, and 5 (each side) bicep curls with 2 lbs weights. The pushups are hard for me, the crunches were pretty easy (that's why I did 10 instead of 5 per set), and the bicep curls weren't hard but I think I didn't focus on isolating the muscles as much as I should. I'm hoping to do these every couple of days and see if I can keep it up. Of course sticking to it completely depends on my health. When I was done I took a painkiller (new prescrip, to help me sleep when the pain is bad enough to keep me awake) because I was just feeling achy even before these exercises, and once I was asleep I was out cold for awhile. I barely had the energy to wake up a few hours later for a bathroom run (because of the TPN). It's still dragging me down 24 hours after I took it (one of the reasons I hate painkillers!) to the point I ended up taking a nap this afternoon because my brain just shut down. Though because of the heat (high 80s in MN - prolly low 70s in my living room) I started getting nauseous and had to fight blacking out when I walked into the kitchen to get some ice to curl up with. Yeah, dysautonomia sucks!! I'm still woosy even now, so I'll probably not do any exercise tonight, but hopefully I'll be able to fall asleep right after I change my TPN bag around midnight. I need to get some paperwork done tomorrow for my next appointment in Milwaukee on Tuesday.
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