Here is my West Nile Virus story. Most of it is made up of excerpts and pictures from my blog.
So far, I am the only one I know about who had MG before getting WNV. But there are several people who got WNV and then went on to get MG. Now that my neuro wants me to get checked out for things like neuromyotonia and CIDP, I have been noticing lots of people have similar symptoms to these when they have WNV. I discovered many of the neurological symptoms are shared with WNV and other, named neurological problems. It’s too bad it takes years to get each thing diagnosed, but the treatment is still IVIg. Just give me the fricking IVIg so I can have some quality of life NOW!!!!
August 4th I was getting sick, but didn’t know why.
6th…I keep saying I hope my yuckiness is from the heat, from moving into an apartment and the chemical smells from living inside. I hope it’s nothing “new”. Then that afternoon, after church, I read an aricle in the Sunday paper about West Nile Virus. I was pretty sure I had it. I got my first rash, and started swelling up at an alarming rate. I felt sick. I fell in the apartment manager’s office.
7th…My face swelled up. Sharp pains in my abdomen started.
8th…I went to a walk in clinic. She told me all I needed to do is get into pilates and aquatic aerobics! She also told me she had cured a truck driver of myasthenia gravis (MG). She reluctantly did a urine test, all the while insisting my blood tests a few days earlier had been just fine. I was severely dehydrated. She said I needed to drink more. I asked her to check on my weight…I had gained 8 pounds in less than a week. She went from acting like I was a malingerer to telling me to go to the ER. I went to the hospital to get my port flushed. I had a fever. I was sent to the ER. I was given Zofran to stop the queasiness. I was wicked swollen, had a stiff neck and headache.
10th…I was getting weaker and uncoordinated. I hurt my knee and it swelled up.
11th…I was going between feverish with weird, prickly sweats and then cold, covered in goosebumps and shivering. People in the building were worried about me. I was beginning to wonder if I was possessed by aliens. (If I’d only known!!!)
12th…I got really sick in church. A woman talked to me about how awful I looked. I dissolved into tears, went home and slept.
14th…I was weak and queasy with a creepy fever and super owie headaches. I was excited though, because I finally got an oxygen concentrator. I was shocked the prescription had gone from 2 to 4 liters per minute. I had my first bouts of numbness. My leg started hurting.
15th…I spent 3.5 hours with my new internist! Now the weight gain was 15 pounds in 2 weeks.
16th…I was very scared today. I am getting even weaker. I shake all over in a quivery, spastic way. When I carry things in my right hand, I get a tremor. Light hurts my head all over, but really pierces my eyes. Diffuse light hardly bothers me. Today’s doc spent a few minutes talking to me. He wants the records from my past hematologists before taking action. He DID say he felt comfortable doing IVIg for me. If all the blood tests the last few days show nothing, I think I will go stark raving mad!!!! I continue to feel wicked bad sick and soon will be too weak to function.
17th…The beginning of my rage. Everything is pissing me off. Then I get a phone call confirming I have West Nile Virus. Only in retrospect can I understand the months of rage and anxiety. I really was possessed by aliens….an alien virus that did damage to every part of me and is still doing damage today. I called the ambulance because my doctor’s nurse told me to. The ambulance came, said I was OK and left. I choked worse than I ever have in my life. Very scared.
18th…Super intense night sweats. Lymphs swollen way up. Misery. Seems to be the worst day yet.
19th…Light was making my head and eyeballs have excruciating pain. I was living on Zofran for the queasiness. So sick that I lost time.
21st…I went to the ER and had blood tests, got IV nausea and pain medicine with IV fluids, a CT scan, 2 spinal taps…one botched and one guided by X-ray. So far it has been determined that I have pancreatitis and probably an infected jaw bone. High lipase levels (pancreatitis) are common with West Nile.
22nd…I still think this is the darnedest disease I have ever had. TRULY, one minute I am fine and the next in agony. I had a brain MRI. (I need to dig up that paperwork) I kept forgetting my name and how to do a signature. My average nightly oxygen saturation was 86 when an overnight oximetry test was done. Gulp!
24th…The beginning of the end of my low carb diet. I went from perfect blood sugar (85-95) to 178. The stress of WNV was getting to me.
25th…I felt better from some symptoms and worse in others. Stupid tremors! My belly button was infected. My MG got worse. The WNV eye dripping was annoying. I was losing concentration. There was a run-in with a mean bishop. Horrific leg cramps. Light sensitive, swollen tongue, swollen jaw and gums. I had raised, ropey, tree root like things in my gums. Yuck! I got a second positive WNV test. I went back to the first doc I ever saw in Utah. He was mad about the crappy care I have gotten. It’s a mystery why I never became an official WNV statistic in Utah. The doc thought it was political.
By the end of August, I was too trusting with the wheelchair and insurance companies. They said I would have my power wheelchair any day. It took another 9 months!
September 2nd…results of my pancreatitis tests were back. Still elevated…but much better.
3rd…The official end of low carb eating. Too poor, too stressed.
4th…Exhausted and tired of home health people! I notice my panic level quickly rises after getting WNV. Brain feels like after stroke. Now I am in AGONY. It feels just like I did in the beginning of this sickness. I have a wicked sore throat and earaches. My guts hurt. My head is splitting and light pierces my eyeballs, then makes me nauseous. My neck lymphs are sore and swollen. I am all sweaty. The littlest things make me panic and I have moments of terror. I feel overwhelmed and overstimulated. Too much noise. Too much movement. Too many thoughts. Too much light. My skin hurts. Sound hurts.
6th…Now I just feel so sick and crazy and rebellious that I LIKE being bad. Sigh…my brain is melting. The place where I got the two spinal taps in my back got to the excruciating point a few times today. Light wasn’t quite so bad, but my joints are worse than ever. I am still sweaty more often than not.
7th…My right leg aches worse than in “forever”. Each time I stand up from bed or a chair, I am scared the last few days. My knees bend in both directions and I keep collapsing.
8th…Shopped at a thrift store a block away. I was so tired and sore I could barely shuffle back to the apartment. When will I learn moderation? I got caught up in the excitement of exploring. I went back to looking like heck. Something is making me wicked bad allergic. I wore my nose out from blowing it! Went to stake conference.
9th…Went to stake conference at the huge Conference Center at Temple Square. Awesome.
11th…Each evening as I reflect back on what I did or said, a lot of it is fuzzy. Very fuzzy. I keep noticing that if I am given free reign to talk, I can go on and on and on… but once I am asked questions I get real confused, real fast. I felt yucky all night long, then in the morning had some pretty bad gut distress. I was wicked bad queasy, so I went outside. Wham! The @$&*$! photophobia was back. In an instant the sun was sticking daggers in my eyeballs, my left eye swelled shut and my nose stuffed up. Soon my lymphs and jaw were sore and swollen. Deja vu all over again! DANG IT!!!! Never have I had such a relapsing remitting illness. I hate WNV!!!!
13th….I know I am forgetting all sorts of things in my day to day life. Each time I realize I am forgetting, my panic level rises…..and rises….and……
14th…Yesterday I thought something was wrong and today I know it. This sure reminds me of my last stroke. It’s as if there are two of me. One is off to the side, watching. The other is sick, falling apart and unable to do certain things. I start researching WNV. Besides the list of long term complications and implications with pancreatitis, there is a lot of very scary stuff with WNV and mental and neurological health. I am not used to feeling so much panic and anxiety. I feel really yucky. It is super hard to think straight. I am also much more clumsy than usual. I keep dropping things, knocking stuff over and I cut my hand with the paring knife. I feel like I am sooooo not here!
15th….I feel sort of like I am getting it all back…swollen lymphs, ear aches, horrible head pain, fever, weird rashes, night sweats, nausea, stiff neck, blurry eyes, achey all over, swollen joints, sore tongue, etc. Will this ever end? I sure don’t feel well. During my more lucid moments, I read everything I can get my hands on about West Nile Virus.
16th….My right leg was wicked painful then switched to excruciating. I would have gone to the ER right then, but there’s no way I could have driven. I shivered for at least an hour before falling asleep. I got cold through and through. The pain is INTENSE. The left side of my face is all swollen up to go with my right leg. The left sided swollen face became numb. I drooled and that eye dripped and cried. I could smile on the right but not the left. While trying to sing, the left side of my face didn’t move much. I sometimes had little muscle spasms in my cheeks. My lips and the left side of my mouth felt fat. This went on for a couple of hours. As it was bugging me the most, something changed. Suddenly that side of my face started itching like crazy. The swelling and numbness disappeared in minutes!
17th…When I woke up, my left cheek was again fat and numb, but it subsided. My right leg still hurts like heck, but it is blessedly less intense. Mostly I am incredibly tired. No matter how much I rest or sleep, I feel worn out. Sometimes I think I wake up even TIREDER!
18th…I didn’t think much today, so I hardly noticed my missing brain cells. I am glad I had no commitments. I was too weak and dizzy to go anywhere. I tried to read the newspaper, but even the ads were above my head. I am very grateful I spent most of my life with intellectual abilities. If you have never been smart, do you know what you are missing? I hope I can be happy when I am senile.
19th…I am very tired of docs and going to the lab!!!!!!! I want some semblance of a “normal” life. I miss thinking. I miss exploring. I miss real conversations. It seems to be a good thing that I have enough brain power to realize what I am missing! I was shaken up by my instability and tremors. When I got up to come back to the apartment, the trembling was like being in an earthquake.
21st…I have a constant struggle between not enough and too much water. I realized my belly now makes contact with the steering wheel! Part of that is edema, but part is new fat. I doubt it’s an exaggeration to say I have an extra gallon in each leg and more than that in my abdomen. Ever since coming down with WNV, edema has been plaguing me like the old days. I had forgotten how much that hurts! Tremors get worse each afternoon.
21st…My neck is definitely more swollen this afternoon. I feel like @$&*%#! Next thing I know, I am burning up. I was either burning up or like ice all night long. Quivering and tremoring and wicked bad queasy, too. It felt horrible. It has been the most dramatic spell of fever and chills thus far in my life. I don’t have a clue how my body can transition back and forth like that. I was either clearly feverish or covered in goose bumps with icy limbs.
22nd…I am again doing the fever and chills thing. Yesterday I did not sweat and it felt creepy to be so hot and dry. Kinda funny to be happy about sweating! The leg swelling is wicked painful and I just generally hurt from head to toe. Even though I write down much of what has happened to me, I leave out at least half of it. It’s because I feel guilty. Guilt is the theme of the day. Why do I feel guilty for being sick???? My sore leg is getting red.
23rd…Today the temple dedication was awesome!!! Made me cry in a good way. The awesomeness helped me get through the hour and a half in the stake building. I am soooo predictable. First the lymphs under my neck/jaw swelled up, then my tongue, then the back of my head. My sinuses were affected one after another and my head hurt. Then the earaches started. Hard to breathe! I walked a lot for me lately…to the parking lot and back twice and into and out of church once. I sure am glad to have the walker. My legs keep randomly giving out underneath me. My ankle is even more swollen today.
24th…Writhing around for hours. It’s the kind of pain that makes me want to gnaw or saw off my leg! So bad I took year old narcotics. Leg pain has been keeping me awake or waking me up every few hours night after night after night. This is the worst so far. I said the original pain felt like a syringe hitting bone. When lying on my left side, it is the part of my right hip/leg that pokes out the farthest. Ever since the WNV started, I have also had right shoulder pain that goes down my arm. It, too becomes almost unbearable. It often makes my arm go numb. The pains are simultaneous. Ohhhhhhh, my gosh! Another pain has been my spine. I don’t know if I was mistaken about it or if it has evolved. At first I thought it was from the two spinal taps. Now it is up and down my entire lower spine. If I am touched there, I want to barf. It hurts real bad. Sometimes no touch is needed to set it off. Using my walker at the health care center got excruciating. The pain from my hip now felt like when a syringe hits a nerve….but it stayed that way for quite awhile. One good thing about all the anger? Adrenaline was coursing through me so much that I stopped tremoring and swaying in the breeze! I am not sure what to do about my newfound abundance of anger. Relish it? Medicate it? Get mad about it? It’s sort of fun to feel deranged. Thank you WNV.
25th…After 4 pain pills, I am pretty excited that I just had a few hours of truly restful and restorative sleep. Maybe the lack of sleep and the incessant pain has a lot to do with my brain feeling nuts? I feel much saner after taking narcotics! I haven’t had any today, but will take one before bed. It is very nice to have less pain…even though I am still in a heck of a lot of pain. I was too ditzy to go anywhere today, so cooked, instead.
26th…What a humongous difference it makes to get decent sleep! I woke up with a feeling of well-being that I forgot existed. My brain seems sooooooo much calmer. The pain is way less intense. I am in tons of pain and had the hiccups for more than half an hour. Looked up my symptoms and I think I have pancreatitis again…well, still…my lipase never did go down to normal since the August bout with pancreatitis. That would explain the fever and clay colored poop and hiccups and pain and burping and a few other things. My hair is coming out by the handful. My ankle is sooooooo swollen.
28th…I was weak and burning up. I was soaked in sweat…or should I say drenched and dripping? As soon as I sat in my comfy chair, I was icy. I have been following the doctor’s recommendation to drink as much water as possible. Lots goes in, little comes out. I feel like a giant water balloon…a feverish balloon. I have gained a LOT of weight!
29th…The Relief Society meeting was absolutely the highlight of my day. When I was wandering about from place to place, trying to find a home, I spent a great deal of time focused on spiritual things. I prayed a lot, I read chapters of Scriptures each day, I went to the temple once or twice a week and I always went to all three hours of meetings each Sunday. Then West Nile hit. I got awfully darned sick. My mind was on the fritz, my concentration was missing and my endurance was shot. It didn’t help that my new meetinghouse has mold. I miss the old me.
October 1st…For awhile, everybody who saw me freaked out about how I walked. Now they just look at me and freak. A medical person saw me in the clinic hallway. The look on her face was sheer horror…and she was looking at ME. She grabbed me and asked if I was OK. I grinned and said no. She was seriously upset! She wasn’t about to let go. This woman was tenacious. She followed me into the lobby, got the elevator for me, held onto me and followed me to the check-in desk. There she told them to watch me. She stuck to me like glue for a good 20 minutes. Each time she put her hand on my back, she said I was burning up. She said my eyes were jiggling around and rolling back in my head. I sat down and soon she said my color was coming back. WHAT!?!? I had used the bathroom just a few minutes before and was neon red with a very raised butterfly rash. Here I thought she was upset because I was so red. Nope! She said when she first saw me, I had been as white as my sandals… as she pointed to my Birkenstocks. Huh? Really? I thought that was pretty cool that I could change colors like that, but she was still freaking out. Turns out this woman was a registered nurse and assisted with endoscopy procedures. She was relentless in telling me I did not look good. Later, I asked the doc if she knew how to make WNV better. She was very concerned about me, but said the same old stuff…no cure for a virus, drink fluids and rest. Ten thousand sighs….
2nd…For whatever reason, I am sicker and weaker and weepier than usual. It sucks. It’s getting harder and harder to struggle to my feet. Once I am upright, it’s hard to stay that way. I am getting weaker and weaker. Going just a few feet to the mailbox is a major trek. Going to the dumpster and back is torture. Coming back is the worst as I run out of strength and energy. My tremors got so bad that the walker was hopping around. My hips and spine get wicked bad painful. My legs give out underneath me every few feet. I am losing function. No way could I do anything or go anywhere today. Each trip to the bathroom was utterly exhausting. It’s also increasingly hard to breathe. I have a bobble head. It feels extra heavy and not connected properly. Took a codeine and slept a few hours. It sure was hard to get out of bed! I am losing muscle tone…in the neurological sense. That is a consequence of West Nile. The neuro I see next week had better prescribe my IVIg pretty darn quick! I am learning way more about WNV than I ever wanted to know. Sigh….
4th…Today the worst pains came from my spine, my hips and the middle of each butt cheek. I spent hours sitting in my chair, whimpering. I couldn’t help it. Lots of zinging pain that made me sick to my stomach. When I walked, it was with difficulty and frequent leg collapsing. Yup…burst into tears a few times. Still tremoring with fatigue and often for no reason at all. My left eye has been gooey and blurry most of the last two months. I think I could think better today. Sometimes life’s details are awfully fuzzy. My right arm/shoulder was absolutely excruciating. My lower spine was wicked hot and my head was pounding extra hard. Geeze! How much can I take??? My guts are not happy, either. The nerve pain is going to drive me insane!!!!!
5th…Last night and this morning I was again in heaps of pain. I hate not being able to flatten out my legs each night! The whole thing is truly agonizing. I hate WNV.
6th… It feels like hard work to have a fever all the time. I get exhausted.
7th…WNV never hits me the same hour to hour or day to day. The fever/chills thing is debilitating. I often feel either fried or painfully icy….usually within moments of each other. I want to say my brain is getting better. I feel less crazy. The biggest discouragement is my weakness, dizziness and loss of stamina. I took the garbage out tonight. I start out mildly limping and come back dragging my foot, tremoring, breathing hard and falling and swaying. I hate these weird, crushing and jolting headaches. They come and stay. I just want them to go! There is no part of my head that does not hurt. As always, the more pain, the queasier I get.
8th…Today was the most I have done ever since getting so sick with WNV. Today I was stopped by one of my favorite tenants here. He told me I was looking much better. This had better mean I am on the mend! I still feel fairly yucky and don’t walk very well…but am going to cling to the hope that the WNV is relenting. Hmmm….I wonder if it’s related to taking garlic pills since Thursday? That same favorite tenant told me to try that. I also bought 2 pounds of fresh garlic. Garlic IS listed as having antiviral qualities…..
9th…Crummy, painful sleep. Met the idiot neuro for the first time. I had such high hopes he would help me. First I saw a very nice woman who was a resident. Then I saw the neuro. I was not impressed. He did not have any records from past docs. I had called his office and was assured that my records had come. Since he had no proof that I have myasthenia gravis and no records showing I have ever gotten an IVIg, he refused to prescribe one. He said to come back in 2 months! I sorely wanted to scream, shout and swear at him…but instead I did what I am good at….I sobbed like a nutcase. I cried all the way home. I was clinging to this appointment like a life raft in a vast ocean. Now that’s yanked away, too. I feel soooooo lost and alone. I feel like I just cannot take much more pain or sickness.
10th…The ongoing effects of WNV have worn me down to depths where I don’t often go. I went from feeling crazy to deep depression. I have hardly ever been this depressed.
11th…Tuesday I genuinely did not care if I lived another second. Wednesday I found renewed faith and hope through prayer.
12th…I feel like I have been bombarded today. Another more than an hour long doctor appointment with my favorite internist. I was more docile and meek than last time. That meant as he prescribed things, I went along. First he looked at my MRI. It shows lots of strokes. He tried to cheer me up by saying I DID have lots of brains. I asked if I absolutely, positively, no doubt had West Nile Virus. He looked at me like a space alien and said yes…he had already told me that before. I just wanted to make sure he was sure. I have been doubting my own sanity a lot lately! I gained 40 pounds since August 1st! I am now prescribed Cymbalta for the fibromyalgia, arthritis and other pains and my craziness. He encouraged me to find another neurologist. What he said about the guy I just saw was NOT complimentary. I again apologized for taking up so much of his time. He looked at me and said I DESERVED his attention. He gets that I am feeling sick, frazzled and nuts.
13th…Is the whole world nuts? What the heck? I keep feeling like I am walking around in some sort of alternative reality….and it’s not because my brain is on the fritz. Ever since I started taking garlic capsules, my health and walking abilities are improving. Too bad I still hurt like heck! Today was the farthest and best I have walked in “forever”.
14th…Yesterday, I noticed I was zipping right along with my walker…and I was able to stand more upright. Today after church I decided to leave the walker. I just plain walked in the house! Before this, I had violent tremors. I fell all over. I held onto any object in sight. I leaned heavily on the walker. Now in the blink of an eye, I am hardly doing those things! Just now I took out the garbage. No walker and no tremors. I did stop to rest a couple of times on the way in, but I wasn’t dizzy and I sure wasn’t crying. Am I really going to get better now? I hope so! I still have not started the Cymbalta. My brain is working better. My body is cooperating more. What a HUGE change! For a couple of months now, each time I thought I was getting better, I plunged right back into pain and despair.
16th…The stupid compression stockings caused me tons of pain. It made my right leg much worse. I have been in excruciating pain since I put the @$&*$#!!! things on. I kept them on a couple of hours hoping the pain would subside. I have now been through hours of the kind of pain that makes me want to gnaw my leg off. I was afraid there was more to the original leg pain than edema and varicose veins. The pain started when the WNV was at its worst. I thought I knew excruciating…but it got worse! I went to urgent care. The doctor said I am “too complicated” and need to go to specialists. He says not to wear compression stockings. Tremors have come back, I can barely move even with the walker and I am really, really weak and owie. I cried all the way to the medical store and back this morning and to the medical center and back tonight.
17th…What the heck? The better I feel one day, the further I go the other way, I guess. I suspect part of it is new medicines. Metformin and Cymbalta. I am wicked bad queasy and am in a stupor. I slept a long time last night and this afternoon. My leg hurts, but the extreme tiredness is enough to make me fall right back asleep after the pain wakes me up. Does WNV ever go away???? I was so psyched thinking it had lost its grip on me. Now here it is, back with a vengeance.
18th…Hopefully I feel better today. Yesterday sucked big time. I was in a lot of just plain misery. I hate doctors, I hate meds and I truly hate compression stockings!
19th…It was soooo weird to be able to walk for two days, then plunge right back into pain, dizziness, queasiness, fever and sweating like crazy. WNV seems relentless. I have had enough!
20th….A rapid transition from swollen legs, to peeing like crazy….then killer leg cramps….but skinnier legs. The company providing my wheelchair kept saying it was a done deal, but I had to wait. Then yesterday when I called, the guy said I had been denied.
21st…I have been feeling brain challenged and utterly fatigued. I am also experiencing bouts of depression and panic. It’s not the me I know. WNV has taken more from me than I ever imagined. I hope I find “it” again.
22nd…I could feel myself go white while walking. Then my heart beat like crazy. My ears are ringing. That made my head very owie and my guts super queasy. I can’t seem to shake it. And speaking of shake, I have big and little tremors going on. My neck hurts. Light hurts my eyeballs. At least my leg isn’t as awful.
23rd…I might be getting community cooties. I had oatmeal for breakfast. A few minutes after eating I was crying and moaning in pain. I don’t remember ever hurting like that from eating! I also got totally soaked in sweat and was burning up. The top of my skull felt like it was caving in…a really sharp pain. The ringing in my ears was super loud. I have no clue…is it a new variation on WNV? Is it whatever caused so many people to miss church last Sunday? Do I just have something new going on? I have got to find a doctor who will do more than pass the buck. My leg now hurts so much the last couple of days then when I walk, just my skirt touching my leg is torture.
24th…Each time I woke up the last couple of nights, it was with a pool of sweat on my chest. Gross. I have been burning up day and night. I am ready to feel better now.
25th…I am still feverish and soaked in sweat. My lower leg is still red. The pain has taken over my entire leg again. How could I have forgotten the behind-the-knee pain?!?! I did. Now it’s back along with pain in my thigh and hip. It hurt so bad while cooking supper that I literally became soaked in sweat from the pain. Touching my lower spine area sent me into back spasms. How can such a light touch hurt sooooo much? The whole thing is crazy and makes me crazier and crazier!
26th…My voice changed from pain. I was in tears. My leg hurt something fierce. Burst into tears again. My leg hurt even more. This is getting REALLY old!!! Sitting here like a zombie with a killer headache. The whole time I was asleep, I was freezing. I got up to pee and put on a sweater. The next time I put on sweatpants. When I got out of bed I had to put on my glasses and stare at the thermostat. It was the first time I ever turned the heat on here. Soon I was too hot and switched to A/C. My body and brain are still NUTS!!!!!
27th…Still sick, sore and crazy. Tired of the never-ending WNV complications. All day I have either been burning up or covered in goosebumps…but sometimes both. My guts are still not happy.
28th…It felt sooooo good to take a 4 hour nap!
29th…I did not sleep well last night and only had a short, fitful nap this afternoon. My guts hurt, I have been very sweaty and my leg is RED. Even grosser? The red part is oozing something sticky. Eeeewwww! I turned my head sideways while pulling down the blinds and the dizziness is feeling more and more like it wants to be vertigo. Ugh….makes me so queasy. While glancing at hospital tests from when I was in the ER, I noticed one line by itself saying I have hepatomegaly. I don’t think I saw that before and I don’t remember any doc saying so. Back when the test was done, I told the ER doc that my liver was swollen and he scoffed at me. I know when it happens because the lower ribs hurt. Jerks. I would like to take my WNV and throw it in a bubbling volcano or into the eye of a hurricane. Grrrr….
30th…My life is pretty boring. I haven’t even been to a grocery store in 15 days. I am either cold or burning up and covered in goosebumps. Each time I wake up at night I am soaked in sweat. This just goes on and on and on…. My leg is still gooey. Ick! I don’t have the energy to deal with anything. I want to go to sleep and wake up with it magically gone and every loose end in my life taken care of. Poof!
31st….I was scary enough for Halloween “as is”.
November 1st…Each step was torture as my skirt touched my bad leg. I held it together and did not burst into tears until later. I HAVE TO go shopping!!!! If I didn’t have to drive, I could take a narcotic pain pill first…but then I’d be too loopy to shop. Sigh… I really need to borrow a body…maybe for just a few hours? Awww…come on….
2nd…I miss IVIg. Without it I aspirate more and more. I cannot really explain what I do, but I am careful to swallow before breathing deep or talking…usually. Tonight I wasn’t careful enough. I aspirated saliva into my lungs and started coughing big time. I coughed and coughed and coughed. Dang, that hurts. Of course my voice changed. Each time I thought I was done coughing, I started up again. I wasn’t even late taking my Mestinon…just weak. Ugh. Next thing I know, the wheezing and whistling started. Pretty soon it was an asthma attack. They have been more frequent ever since WNV. Electric shocks and muscle spasms started in my bad leg. Then I got tremors in my left hand and fingers. Tremors are usually on my right. My leg had all sorts of jerks and twitches going on. My belly got a strange tenseness and pain. I got a sensation as if there were an iron bar in my gut. Within just a few minutes my belly bloated up huge and tight. I started burping like crazy. A strange feeling washed over me, so I sat up. After a minute or so I got hiccups. They wouldn’t stop! I felt like I was going to turn inside out. I think they were the closest together hiccups of my life. I got up. The hiccups were so strong that I felt like I was being knocked around. Then they morphed into hiccup burps. It’s amazing how much force is involved! I tried eating cornbread and drinking water while holding my breath as much as possible. Whew! The hiccups finally stopped. What the heck was that all about???? Was it all related? I went to see a doc. She doubled my dose of Cymbalta, gave me a 30 day script for Norco 10-325 and I have a referral for vascular surgery. She wrote down lipodermatosclerosis as the diagnosis. This hurts soooooooo bad!! She apologized that she is not able to prescribe IVIg and told me how to get a neuro to prescribe it in Utah.
3rd…I knew I was going to have to pay for yesterday. Besides going to the doctor, I shopped at three stores. The one with the best deals does not have electric scooters. I took one of the narcotics as soon as I got home. It wore off in the middle of the night. Then I just had to tough it out. When I first got WNV, it was weird. I was exhausted and dearly wanted to sleep, but the pain and stuff going on prevented me from decent snoozing. Later on, I napped much more. I snoozed away a huge chunk of today…and I am still tired. Yesterday was the most walking I have done in a month. My leg is not amused. The doc said it’s nerve pain and all the nerve endings in my bad leg act as if they are raw. She’s got that right! It’s totally unlike my usual muscle and joint pains.
4th…Today my only problem was leg pain until soon after Sunday school started. Then I got a sharp, stinging pain near my right collarbone. At first I dismissed it and then it got wicked painful. Soon I was very light headed. Then half of my tongue went numb, then my right arm had tingly prickles. I kept wondering if it was a blood clot or stroke. When my lung hurt and I started coughing, I wondered if I was a goner. By the time the lesson was over I was just dizzy as usual. In the middle I felt like a zombie. A couple of women could see I was dizzy. I am always thinking I am playing it cool and no one will know. Darn eyes gave me away again.
5th…My leg still hurts like heck! I am worried that I am more out of breath than usual. I became soaked in sweat from pain. Earlier I had been burning up, but covered in goose bumps. I am tired of feeling like crap!
6th…I woke up in unbearable leg pain. I took the first of my new narcotics. Whoa Nelly!!!! Must be because they are fresh…those suckers are potent! I still feel whoozy. But…it sure helped me sleep better. My leg is not doing well at all. The pain has moved down into my foot and up to my hips and butt. I worry what’s going on in there. I am also short of breath and keep being soaked in sweat. I was again as wet as if I had just gotten out of the shower. This is creepy. No medical miracles in sight.
7th…My leg hurts worse than ever. How the heck can I wait until the 15th just to be seen? The two varicose veins being popped out of my leg from the leading edge of the fat being eaten up feel like they are going to burst. I keep feeling sensations like fluid running down my leg. My skin looks more orange than red today. Not sure why. The difference in surface temperature between the white and colored spots is quite a bit. I am at wit’s end today. The pain is excruciating.
8th…This is horrible torture. I went to the ER. The triage nurse gasped when she saw my leg. I cried like a baby. When my leg is touched and moved around it is quite excruciating. The doctor said in his 30 years of practice he had never seen a leg like mine. He wanted to give me a pain shot but couldn’t since I drove myself. Instead I got a script for 2 oxycodone 7.5 pills every 6 hours. That ought to wipe me out! As I suspected, there is nothing an ER can do for me. He said I need “esoteric sub specialists”. What else is new? He also says it’s important to get IVIg ASAP…and I need to find a neuro or rheumatologist who will prescribe it. Sigh….why is everything my project? On the way out of the hospital I asked the cop to please shoot me. He wouldn’t. I took the 15 mg of Percocet but am still in horrible pain. The pressure in my leg is wicked high. The nurse followed me to the ER entrance and asked if the doctor had talked to me about the possibility of amputation!!!!
9th…The white spots have doubled since yesterday. The doc says they are “atrophie blanche”, also called “livedoid vasculopathy”. It means the capillaries are being/have been destroyed, along with decreased cutaneous oxygen that will cause my leg to die. One would think that 15 mg of oxycodone would make a dent in my pain. It keeps getting even more excruciating. Why is everything to do with my healthcare a nightmare? Why are most of my problems in the rare disease category? I am tired of being this “special”. Most of all…what’s up with passing the buck and not helping me? Each doc does the EXACT same thing! They raise their hands in the air like it’s a stick-up, say it’s nothing they have experience in, while backing out of the room.
10th…Forming coherent thoughts and then expressing them is difficult and frustrating. Today I talked to my daughter OK, but I sure noticed how hard it was to keep up my end of the conversation. Then I got killer thigh cramps. I started moaning and owing and eventually they subsided. I got to talk some more and they hit with a vengeance 😦 I was writhing in bed, then had to stand up. I went from wall to wall, leaned on it, writhed around and banged my head repeatedly against the wall. I wasn’t much fun to talk to. I feel very queasy and yucky. I don’t want to go anywhere. I know I need to see a doctor, but have no mental or physical energy for it.
11th….The forecast said we would have 2 to 6 inches of snow overnight. It was definitely more than 6! Today highlighted a major flaw in my ability to deal with winter. Somehow I still have my winter coat, but I have no boots or shoes…just my Birkenstocks. At church, my leg was in excruciating pain since I couldn’t take meds or put my leg up. It was good to come home and take pain pills. Now I am quickly slipping back into zombie mode. All this because of some @$&*$#!! mosquito bites. I just read a study that WNV is getting more severe. People are getting increased neuroinvasive symptoms. The skin is so tight on my leg that the toes are moving apart. I have not gone a moment without pain.
12th…The worst pain has been from my knee…to my right shoulder and down my arm. There are wicked bad stinging pains that make me want to barf. I guess the worst of the constant leg pain comes from the leading edge where tight red skin meets squishy white skin. That part is developing bumpy inflammation that goes deep. I was stuffed up and coughing a little. Now my entire right rib area hurts when I breathe. I don’t think Percocets work as good as Vicodin do, even though the oxycodone is supposedly stronger than the hydrocodone. Today I have spent more time crying from leg pain than any other day. I got a call from the wheelchair people. I need to go through another physical therapy appointment to get a second opinion for insurance. Last time my now bad leg wasn’t even an issue. I don’t know how they can deny it this time.
13th….Second grandson born! Walking or standing makes my leg go nuts. Now it’s owier than ever. My leg swelled WAY UP.
14th…I hurry to my vascular appointment only to find out I am there the wrong day. I burst into tears. Told the receptionist to just shoot me and put me out of my misery. She was way too empathetic and came around the counter and hugged me. I told her I was sorry for being so crazy. She was very surprised that even though I had never seen this doctor, he had me scheduled for a leg scan and THEN the appointment with him. I told her it’s because I emailed pictures of my leg. I lifted my skirt and all 4 folks behind the counter rushed to look. They were horrified. The nice woman stuffed a whole box of Kleenex in my walker. Sigh…I am such a cry baby. I cried all the way home. The wheelchair guy called. He insists it was the (idiot) neurologist who told insurance that I can walk just fine and do not need a wheelchair. The neurologist’s secretary is the one who pushed me a looooong way down to valet parking and it was the valet who pushed me up there. I am livid. Insurance will do anything to get out of paying for a wheelchair. My arm gets wicked bad numb when I am asleep. My brain has gotten better since the worst from WNV, but I am not even close to being back to “normal”. That rashy red band on my leg is new..and feels awful. Underneath it the skin looks kind of dead and peeling. My leg just plain looks horrid. It looks like something ready to be sawed off.
15th…I had an ultrasound and Doppler of both legs. I cried the whole time she was doing my right leg. No tears for the left leg and only one squeal and jump for the left side…a few bazillion for the right. I saw two docs. Reminded me of the neuro appointment. The first one was nice, the second had the personality of most surgeons. Crappy patient rapport, but gung ho about surgery. He wants to operate on one of my veins…but says it will only make me 10% better. The leg tests showed back flow in all my veins. His only solution? Wear compression hose. I told him they give me cellulitis. He didn’t care. He prescribed cotton hose. If that doesn’t work there are uno boots or compression wraps. He said there was no cure for lipodermatosclerosis and nothing else I could do. I guess I have to see a dermatologist now. I want to make my leg better…not live on narcotics forever! The surgeon didn’t see anything wrong with “forever” narcotic use.
16th…It has been more than a month since I started taking Cymbalta. Now that my dose has doubled, I think it’s working. At first I kept thinking that my leg pain was so overwhelming that my other issues were drowned out by the intensity. Now I am thinking it’s actually helping my Fibromyalgia. Trying not to take narcotics, but it hurts too much not to. My leg gets less red when the pain pills are in effect. I want to know why? Does pain cause my blood vessels to act differently?
17th…I struggled to put on my new compression stockings.
18th…My leg is looking much better from the top. My constant application of tea tree oil seems to be getting rid of the red rash. It looks better after a long time in bed or when I am at the most potent part of taking a dose of narcotics. I was impressed how well I did with the compression hose today. The biggest problem is the vase shape of my bad leg. It tapers all the way down. That means the stocking tops roll down and make marks on my leg from the constricton. I had to take them off after a few hours because of the pain…but I did better than last time I wore these things. I still cannot imagine life without narcotics for the pain, though. I hate that! This morning I knew I was going to church so did not take a narcotic. My leg only hurt a minimal amount during breakfast. Then about half way through sacrament meeting, the pain got wicked intense. My body was jerking around as if I were being electrocuted. Giant tears came rolling out of my face. I had no control over them and was sooooo embarrassed! Pretty soon my shirt was all wet. Sweat was pouring from my scalp, too. I left after sacrament and I sobbed all the way home in pain and frustration. I guess I am still nuts. I have done plenty of gasping and crying at home, too. I walked in the door to find I had left the lamp on. In church I realized I had forgotten to bring my Scriptures. I am obviously not as with-it as I thought I was.
19th…The red part of my leg gets drier than the rest of me. It basically feels like a burn….constantly tightening and with a burning, stinging feeling. I slept from 10 to 1. I didn’t sleep well last night because I refused to take a narcotic. I haven’t had any today, either. It’s not that the pain is gone, it’s just that taking that stuff for too long scared me. I put bag balm on my leg.
20th… I haven’t got the slightest spark of energy. Not taking narcotics is as tough on me as taking them. WNV has certainly changed my life. Yesterday a nurse said she has a patient who got WNV about the same time as me. He, too is now using a walker. It sucks! I am sooooo tired of the fever/chill thing, the killer headaches, fall-out from pancreatitis, revving up of the lipodermatosclerosis and all sorts of smaller but irritating changes.
21st…Lately I have been attached to the bathroom. I keep meaning to figure out if it’s withdrawal from narcotics or if I have something else going on. I went to bed early. I felt super yucky. I woke up soaked in sweat and feverish. That has become my “normal” ever since WNV. In the last 24 hours I have slept 16 of them. That’s how crummy I feel. I Googled “narcotic withdrawal” and “how long does it take to get addicted to narcotics”. Yup…that’s what is going on. I still have 14 Norco 10-325’s left, I am still in pain, but I didn’t want to keep taking those nasty things. If it’s this hard to quit after a couple of weeks of Percocets and Vicodins, imagine how awful it must feel if you take them longer!
22nd…When I read some of the posts from my West Nile Virus group, I am very, very thankful that I did not get a worse case of WNV. Hundreds of people have died or been hospitalized for months on end. Some are on life support barely hanging on. 80% of people bitten by an infected mosquito never even know they harbor the virus. The other 20% of us know all too well that we have WNV. The WNV experience in the first month is interesting in retrospect. I went through many of the symptoms that can become permanent or deadly, but most lasted hours, days or weeks, and then my body and brain snapped out of it and went on to something else. Even though I was really sick and crazy, it was fascinating. I experienced symptoms from most of the things that can happen to someone with WNV, but my body repaired them each time. What a miracle and a blessing! I still have to deal with the after effects of severe pancreatitis and the lipodermatosclerosis flare up and untold other WNV fun and excitement, but I am still here to talk about it. I sure have had more than the nine lives of a cat in my lifetime! My leg still hurts more than you can imagine, but it’s not as bad as it was. If only I could get my IVIg again, it might even go back into remission. It’s not as red as it used to be. Most of the pain is from tightness and the horrid line between peg leg and swelling. There is one spot on the front of my leg that makes the bone ache. All that pain makes me queasy pretty much 24/7. There are moments I would gladly gnaw off or saw off my leg, but I am very grateful it’s still with me. Today is Thanksgiving. I am very owie. My leg isn’t very red, though. I was afraid I was going to have the kind of leg cramps that make me scream, but the cramps went away! The last half hour of cooking before the guests came was torture. My hands kept cramping and spasming. I screamed a lot, but don’t think I even screamed once in front of company.
23rd…Well…the PT picked a good day to evaluate me for a wheelchair! I way overdid it yesterday. Today it’s hard to move, I have all sorts of tremors and my leg is blazing hot. She was phenomenal! She explained lots of stuff wrong with me and told me the correct names. Whereas I say I “walk like a drunk”, she says to tell people I have ataxia. She quickly picked up on my myoclonic jerks, but my internest recently told me that name. Something I always wanted to know is why my right arm tremors when some other part of my body is exerted. I don’t remember the whole explanation now, but it’s to do with muscular fatigue, oxygen and myasthenia gravis. It was totally cool to have so much explained. I felt very comforted with her gentleness, kindness and understanding. She went over my diagnosis’ and stacks of medical paperwork. It came as an epiphany at that point that all the owiness I try to hide on a daily basis was exactly what she was there to document. Duh! It’s always disconcerting to go over ALL of my numerous and varied problems. I feel like such a freak…and a wreck. She was sooooo calming and kind. She made my day. So, after two and a half hours, she rattled off the sort of wheelchair she is recommendeding I get, along with all the special features. At first she said it was the Cadillac of wheelchairs, but decided no, it’s at least a Mercedes-Benz but not quite a Ferrari. Because of my neurological diseases combined with the lipodermatosclerosis she is recommendeding a chair that sits upright, tilts and reclines. It also has a zillion special features. Word is, this woman writes up lengthy reports and hers are rarely denied. I guess I will believe it when I see it. I sure hope this works out. I am tired of being so limited. It sure would be nice to be able to do things like take public transportation or go to the library. Life would be very different to be able to be mobile.
24th…It’s a pretty dramatic change where it goes from peg leg to muffin top. This morning the muffin top hurts more than the peg. It used to be that the active edge was fairly circular around the circumference. Now it has a V shape up the front of my leg. The puffy part on the inside of my leg is full of veins that are being squeezed inward and upward as the active edge advances ever skyward. It hurts like heck! I was told today how much a fancy wheelchair costs! It’s more than every car I have owned in my lifetime, put together. My daughter is buying me a ticket to fly and visit her and my 2 grandsons! Lots of logistics to work out. I need to have an oxygen concentrator in Oregon.
25th…I felt extra tired and weak yesterday and figured I would be better today. Ha! Three or four days ago I fell and almost every day I fall into walls. The bruises were most dramatic the day the physical therapist was here. When she asked if I ever fell, I just showed her my various bruised body parts. She was sharp, she had already seen and written it down. It was kind of scary to have to quantify how often I fall all the way or part way each month. I usually try to minimize my falling. I got weird breath, my belly distended and I had incrediblly awful diarrhea for hours. I was burning up and sweating profusely. I switched between burning up and goosebumps every few minutes. I got a weird bump on my foot and my legs swelled up. At the V part of the lipodermatosclerosis I have developed a watery bubble that has popped twice and it hurts right to my bone.
26th…I attempted to find out how leg ulcers form and what they look like in the beginning stages. I kept finding descriptions saying they began as fluid filled blisters that popped. I read the descriptions of leg ulcers and studied pictures. Many of the legs had ulcers in the exact same spot as mine. Info said the blisters were from trapped fluid in the leg that has nowhere to go, so rises to the surface in a blister that pops and drains. Many folks said that whatever they did, the spot still became infected and turned into a nasty, open wound. The pictures were appalling. All day my gut distress and leg pain vied for attention. Again, the fever and goosebumps switched places quickly and often. I could feel pools of sweat on my chest. I pulled off the quilt. The whole inside was soaked…not just a body print, but soaked. I flipped the quilt over and came out in the living room to dry off. In a weird and unusual twist, my hair was and is totally dry.
27th…I woke up very shakey and weak again. I had to go three places…the pharmacy, to the hospital for a port flush and to my doc for a referral to the lymphedema clinic. While getting my port flushed, I was chatting with the nurse about the last time I was there and the nurse told me to go to the ER…which ultimately turned out to be West Nile Virus. She wanted to know all about the disease. I joked around about how I seem to collect autoimmune and rare diseases. All that time I had been holding the left top of my blouse out of the way so she could work on me. In a flash, my left hand went into the most severe spasm of my life! I involuntarily screamed, apologized, started crying and kept trying to flatten my fingers out. Each finger was going in a different direction and at all impossible angles. Just as I would uncurl or straighten each, it would curl up even harder. The poor nurse was wide-eyed and quite freaked out. It literally knocked the air out of me at one point. Once it stopped, my knuckles were bright red. The nurse said it looked like I was having a seizure. Then it got even creepier! The same force that spasmed my hand went to my throat, my chest, my spine, hips and legs in a process that took over an hour. When it hit my spine I began to truly understand the description “red hot poker”. It was piercing and searing along with spasm…a new sensation for me. I just wanted to die. All of the sudden sweat started pouring off my forehead and my stomach went into a massive clench. I broke out in hot prickles all over my body and the whole world started going black. I got in bed and slept like a dead body for 5 hours. The darned diarrhea woke me up. I have been having trouble swallowing lately. Sometimes it is MG weakness where my tongue and neck are so fatigued that it’s almost as if I forget how to swallow. More often than not, I then choke. All of the sudden when I swallow, it feels like a double ended sharp knife going down sideways. That one is extremely distressing as it happens, but then the pain is gone. I nuked a piece of my homemade bread for 30 seconds and then buttered it. It was not hot. The second I put it in my mouth, the entire lining of my mouth got sore and bumps popped out. Ten minutes later it’s as if it never happened, except for a lingering soreness in my throat and tongue. What the heck is that?
28th…My latest crop of bruises are fading and so is the peg leg redness. Bag balm is doing a very good job of healing what it can. It still hurts like heck 24/7 and it still has water filled blister thingies. The weird mouth thing is still going on. I was afraid to eat more yesterday! After 4 PM, I gingerly tried munching on leftover party mix chips. Nothing happened. I figured the morning thing was just some random, transient problem. Then I brushed my teeth and the soreness and bumps were even worse than while eating the bread and butter. What the heck???
29th…I went to the dermatologist. I knew I liked him instantly 🙂 He was laughing and smiling. He was also great fun to talk to. He said my disease is pretty rare and they don’t see it often. He wanted to give me potassium iodide but I am allergic to iodine. He did not want to risk it. What he wants to do is put me in a light box. But…since I have lupus, they have to cover me all up except the peg leg. Otherwise it could give me a lupus flare up. The guy was REALLY nice. He kept patting me in sympathy. He was intrigued by all my autoimmune diseases. We discussed what kinds of specialties have the nicest docs and why neuros are the worst. He knew all the lipodermatosclerosis studies. I was impressed. Since I specialize in having rare diseases, it’s nice to find a doc who knows about them. He promised that the staff would write up paperwork to convince my insurance company to pay for the light therapy. He says there’s not much to do for my leg now that it’s in the fibrotic stage. I looked up my new dermatologist. He is known internationally and has done a lot with lupus and dermatomyositis. No wonder. I love the guy. He understands me!
30th…I am quite frazzled. Blessedly my leg waited until things calmed down to start hurting bad. I found out this afternoon that I got the sought-after referral for me to go to the lymphedema clinic. YES! Now I hope insurance will say yes to the light therapy and fancy wheelchair.
December 1st…Even though I have taken Mestinon and Motrin today, it doesn’t feel like it. It’s difficult and painful to hold my head upright and my hips and legs and spine are all out of whack with aches and sharp pains. I have been getting ready for my trip to Portland. Being old and wimpy isn’t for sissies. Here is my walker, CPAP machine and portable oxygen concentrator. I called the airline who says the walker gets checked for free and the concentrator comes with me in the cabin. I plan to put the CPAP inside my carry aboard luggage. I arranged for a bulkhead aisle seat for maximum leg room. I am getting a wheelchair and someone to push it at both airports.
2nd…Thanks to West Nile Virus, I never seem to stop sweating. Add that to my usual cycles of swelling/unswelling and night sweats and my poor electrolytes are in a tizzy. I was never dry ALL night last night. I even soaked through the little bolster pillow I keep under the back of my neck. The bed will take all day to dry out! Well…all this sweating has caused me to wake up most mornings lately with thigh cramps. Today it was top to bottom entire leg cramps. My leg is amazingly pale. It would be nice if it stayed this way…and keeps getting better!
3rd…Saturday and Sunday were busy days. After church I got my luggage ready, called a taxi and went to the airport. The folks in SLC were wonderful. They quickly put me in a wheelchair, taped up my walker and checked it as baggage. I was whisked to the correct gate. When I knew I had 20 minutes before boarding, I put my o2 concentrator and bag on the wheelchair and pushed it across the way to the ladies room. My legs kept giving out underneath me and it was slow going. By the time I got back to the gate, my right arm was tremoring hard. It did that for the next half hour. Thankfully the person who pushed me to the plane door put my luggage up above for me. When I got to Portland I was again whisked from the plane and taken to baggage to get my walker. Then she took me to a seat so I could watch for my daughter. That night, dragged a mattress down from the attic and put it on the floor in Fletcher’s room. I told her not to worry about dragging down the bed frame. WRONG ANSWER! I struggled to get up to go pee and take meds. My legs had no feeling or strength…and neither did my arms. I crashed to the floor unto my left cheekbones, unable to even break my fall. I saw sparks and stars. Then I could not move AT ALL. I stayed on the cold floor for a long time, too numb to even cry. I could not roll back to the mattress. My arms were mush. At first my legs were paralyzed. I accidentally bumped a chair and something fell of it. That woke my daughter and she came in to find me sprawled on the floor. Sigh…I came here to be helpful, not a lump on the floor. When I woke up the only mark was a cut lip and a small bump. I was amazed, since my arms and legs bruise so readily. Each time I got to the end of my Motrin dose, I had a headache. I am OK for me and am getting around the house with my walker. That afternoon, my daughter went up in the attic and brought down the bed frame. She put it together and got the mattress on it. Pure bliss to conk out.
4th….The baby was congested and was having a hard time breathing. The snot sucker was not very helpful. When I was a kid, I had chronic bronchitis. My cousin was a respiratory therapist. I absolutely loved when he cupped his hands and did percussion on my back. I tried it on the baby. He likes to be “beaten” pretty hard. It works best when his head hangs over my shoulder. It breaks up the phlegm and he then sneezes and coughs and we can then use the baby snot sucker to suction the rest out. When you have myasthenia gravis, repeated motions are hard to do! I am able to keep switching my baby beating arm, so he generally stays pretty happy. If I stop too long, he cries. A good back pounding helps him sleep. My daughter had to go to the dentist today and the older grandson was at preschool. I was left to pound on the baby. At one point I fell asleep while still patting him on the back…sitting on the couch. I crawled in bed with him and patted his back until we both fell asleep. We slept two hours! Ahhhhh… I made food for snacks and supper. I sweated profusely from working in the kitchen. After everyone went to bed, I got dizzy and fell again. I am talented…I managed to somehow take skin off my arm by falling on a soft leather couch.
5th….I took a nap this afternoon. When I woke up, I had a very owie headache on the purple side. It seems to have taken time to have the booboo look and feel the worst.
7th…I think my black eye is looking better. I am still awfully weak. I am constantly afraid of falling again. Yikes.
8th…Would you believe I fell out of the wheelchair in Portland? When I got to SLC, one of the first things the guy did was to buckle me in the chair. Since no other person tied me down, I wonder if they wrote it on my record? The TSA agents would not even let me get out of the chair. The woman who patted me down said she thought I have a concussion. Well, that’s probably true. Sigh…sooooooo dizzy and weak…. I tried snoozing but both of my legs hurt like heck. All I can think of is, could it be the difference in elevation between Portland and SLC? I wonder that because breathing is harder. Dang…my bad leg kinda feels like the inside of it is full of biting red ants. It’s making me nuts enough to think about taking a Vicodin. Between my usual maladies, WNV, my head injury and being awake half the night, my head sure is owie. I keep blaming my pains on higher elevation. That’s all I can think of. My head and bad leg hurt more here in SLC than they did in Portland. I had more distractions with the grandkids, but that’s not it, either. The pain in my head now is reminiscent of when I first got West Nile Virus. I am thinking that smashing my head into the floor is riling up the WNV stuff again. Maybe it’s also the cumulative effect of too many head traumas lately. My 800 mg Motrin’s aren’t even putting a dent in the head pain. Dang it. I am sooooo sick of docs…but I guess I will have to make an appointment to have my head examined next week. Sigh…the TSA folks might be right that I have a concussion.
12th…I feel horrible today. My guts are unhappy from head to toe. I am weaker than I have been in awhile. I don’t know if there’s rhyme or reason for it. Just got up from a three and a half hour nap. If my guts hadn’t woken me up, I would still be snoozing. I am exhausted. I sure wish I had a wheelchair. Being this weak sucks! No word since the last evaluation was turned in. For good news…my black eye, purple breast and skinned knee are fading after hitting the floor at my daughter’s house. MG is sure on my mind today. I am REALLY weak. Sigh…. Hardly a trip outside my apartment door goes by without people asking questions or making comments. Most people are perplexed that I walk OK one moment or day or hour or whatever…and then I don’t. Many people are skeptical. Is she sick and disabled…or not???? Sometimes I am very droopy and folks think I am frowning. Nope…that’s a muscle-tired smile. I keep snickering when I think about the physical therapist. I don’t walk like a drunk! She said to say I have ataxia.
13th….I hate to admit just how wimpy I am since I got back from Oregon. I am still wicked bad weak. While shopping one of my eyelids went to half mast and stayed that way a few hours. It seems as if the Mestinon quit working. My voice keeps getting funny. Lifting my arms and legs and neck feels like torture. How long can I go without IVIg without going into myasthenic crisis?
14th…There is only a faint bit of purple and yellow left from my black eye. I was told I HAVE TO go to the ER or doc about my head. I am too tired and exhausted to care right now. It was my first time to get my leg wrapped up at the lymphedema clinic. It hurts! The guy who wrapped me tried to put extra padding where the leg dramatically changes circumference. He was hoping that would alleviate wrinkling and drooping. No such luck. The ridges under the bandaging are painful. On the way home from the clinic I had another major pain in my head, worse than the day before. It made my eyelid go to half mast and my voice change. My left cheekbone still hurts and feels like it has pressure behind it. The head pains are between my jaw and temple. They are not quite like any head pains I have had before. I also have the back of the head/neck headaches that feel like an elephant kicked me. I went through severe nausea with WNV…but ironically almost never barfed. Since the head injury upchucking is happening with much less nausea involved. I slept away most of today after getting home from the clinic. I feel a lot like when WNV was the worst. Light hurts. Noise hurts. I cannot taste. Everything hurts. My ears ring. And I continue to go from hot to goosebumps in seconds.
15th…I tried to sit in my comfy chair and I tried to be in bed. At 2 AM the pain was unbearable. I unwrapped my leg. It stings like crazy. Feels like I got bit by a swarm of wasps. The peg-leg got skinnier and the wide part got wider. I have some new very hard bumps where the bandaging scrunched up on my leg. The pain is so intense that I am on the verge of barfing. Yes, it’s making me cry. I cannot bear keeping the wrapping on my leg. I feel like a real failure. I like and respect the guy who wrapped me up. I am way too wimpy to take the pain. I managed to sleep just a very short time. I was in sooooooo much pain! Just before the compression stockings got to be too much for me, my belly swelled up huge and I got queasy. I never have any idea what that’s about. Once I tried to lie flat in bed, I realized my liver was swollen again. It was pushing hard on my ribs. I am glad I have proof of that from going to the ER this summer. I told them my liver was swollen and they acted like I could not possibly know that. I forget now if it was a CT scan or ultrasound, but it showed my liver was swollen. It has been happening much of my life. So this afternoon my liver pushing on my ribs made it feel like my ribs were being pried apart. I tried massaging the ribs, poking at them and all the usual things I do. I finally fell asleep. I woke up still queasy, sore and with an itchy back. I again looked at the pictures of how swollen the top of my leg got and thought about my swollen belly. Just for the heck of it, I Googled leg edema and liver. There seems to be a connection between the two. So…when the edema was pushed up my leg and towards my belly, the liver started hurting. They have to be related. It has happened many times before. Now that I have figured that much out, I need a medical person to decipher it all. Each time wraps or compression stockings have been used on me, I got weird itchy and my liver swelled up. When the swelling stops going in my legs, it goes to my abdomen. I still think compression is evil, but will keep trying. Food sounds awful, I am still queasy. Got back to the apartment to discover my undergarments were soaked enough with sweat to wring out. What’s up with the creepy sweating? I am ready to feel better. My head hurts like heck. The doc gave me a script for topamax. I haven’t taken one yet. I might start soon. It’s supposed to help my migraine/cluster headaches. Meds freak me out.
17th…A guy flew here from Las Vegas to measure me for a wheelchair. He is going to build me a custom-made wheelchair using parts from many different companies. I chose an autumn orange color since almost every wheelchair in this building is candy apple red. Today my strength and mobility suck. It’s even worse than yesterday. The place I bonked my head no longer has a black eye, but it hurts worse each day. Even all the roots of my teeth hurt. I really need a new body, but a wheelchair would help. The guy said it will cost over $20,000 for my custom “hot rod” wheelchair! I wish it didn’t cost that much for IVIg’s, too. I need one bad. I cannot believe how weak and short of breath I have been the last two days.
18th…Today I had to face the therapist after unwrapping the leg he so carefully wrapped up. The best news? He said I am not the only one with those problems. I am tired of feeling like a freak. The therapist is going to have special compression gear made to fit my unique shape. He measured my leg and then took pictures. I never see my bad leg from the back. I was horrified! It has been suggested I might want to go talk to a mental health counselor. People have not seen me this depressed. This is a low point for me. I feel like I am trying to straighten out way too many issues at once. Usually I am weak or hurt or sick…then drag myself out of my chair to still accomplish things, slowly but surely. Sunday night the apartment was the messiest it had ever been. I was too weak and sick to do much, even in stages. A whole dishwasher full of stuff was sitting in the sink, waiting to be loaded. I feel kinda ground down by the dramas and disabilities. I need about a week of sleep!
20th…This morning I had a mammogram. I had a heck of a time getting ready. Every time I walk, my legs give out from under me. I have very little energy or strength. It was a looooong walk to the place for mammograms. I could barely make it and I was swaying and tremoring. Apparently my eyes were doing all sorts of strange things. Everybody who looked at me commented…then their alarm escalated. By the time the mammogram was done and I got dressed, I was stating to panic. My ears were ringing, I was wicked bad dizzy, gasping for breath and my legs kept buckling. The last straw was when my vision got dark. A woman asked me if I was OK. I started to tell her I would be fine and then burst into tears. I left feeling like such a pathetic wimp. I hate crying in front of people.
21st…The air inversion is making breathing tough. I took a pic of my swollen face while I was tremoring. My whole head is swollen. Yes, I am worried about it. Light and sound hurt a lot! I have a fading lupus rash from being under fluorescent lights this morning. I got a lecture at the hospital that I need to see the horrid neurologist about my concussion getting worse. Fat chance.
22nd…My face isn’t as round today. Most of the swelling is in the back of my head and all around my neck. My cheeks hurt from still being swollen, though. During the night my toes and the top of my foot swelled up. My belly feels like I am pregnant with triplets and is very, very queasy. My spine hurts and I am burning up. My head continues to hurt inside my skull where I fell. Light and sound are amplified and wicked painful. I don’t want to go to the ER for Christmas! I feel sooooooo yucky……
23rd….Swollen again. That’s what woke me up. My neck is so swollen that it’s hard to swallow. The pain in my face is divided right down the middle…as if with a ruler. The left side that I fell on is tingly and cold and feels too thick. I can feel way more pressure on that side. My eyebrow, cheekbone and the orbit of my eye hurt the most. The roots of my teeth on that side are all owie. Ever since West Nile Virus, my head has been hurting. Now the concussion and the WNV seem to be ganging up together. And today when I move my head around, there’s lots of noise in my head. It’s creepy. I can’t get over how swollen my neck is. My ear aches on the left side, too. The pressure in my head on top is on both sides, yet all the strange feelings are just on the left. I was soaked in sweat all evening and all night. This is not just a little sweaty! I had to keep getting up and sitting in front of the fan to dry out. Getting up is not an easy thing. The weakness, tremoring and legs giving out from under me is scary. I feel all messed up! I think of myself as someone who likes to go places. I have loved traveling and meeting new people. More and more I dread being in public. I hate people thinking I am impaired from drugs or alcohol. I feel more freaked out daily when I physically cannot function “correctly” in public. Pain makes me wince, look like heck and cry. I get more and more embarrassed by that. My disabilities are getting more complicated. West Nile Virus affected my brain AND my body. I feel less and less in control of anything. When out in public, I feel humiliated and embarrassed by my inability to walk and do stuff. In church today, I got stuck in my coat. I panicked. I was too weak to either put it back on, or get it off. The struggle had me sweating profusely. I tried to sing the first hymn, but my glasses kept fogging up from my sweating. Sweat was rolling down me in sheets. I kept wiping the sweat off with my blouse. I had to go sit in the hallway. Once I was out there, I burst into tears big time. There was no stopping them. The myoclonic jerks were making my legs hop all over. I had been having facial fasiculations ever since I woke up. My head was hurting like crazy. I was very queasy. I escaped and came home. It was a very slow and painful process to load and unload the walker plus shuffle to and fro. Once I got in the house I was ready to never own a car again and never leave the apartment. I felt safe and hidden. I was trying to research if disabled people become embarrassed recluses. I figured there ought to be something related to physical disability. Instead I read about agoraphobia with panic attacks. Now I feel even more panicked. What’s happening to me?
24th…Last night was torture. I kept getting into bed, but each time I got flat, the pain in my head was unmerciful. Then I would sit in my chair to calm the pain and nausea and try to lie down again. Ugh. All night long I sweated profusely. Every 2 hours I had to get up and pee. Even more than usual, I clung to my walker for dear life. Nowadays I am totally scared of falling again. Before I could go back to bed again, I would sit in front of the fan at least 15 minutes. I repeated that cycle for 13 hours. I don’t feel rested. When I finally got up, the left side of my head was numb. It also hurt like heck from pressure. I just wanted to be The Blob, but I cooked breakfast. I had to have the fan on me the whole time I ate as I was soaked in sweat. Everything I read says the stuff going on with my head is not good. It should not continually be getting worse after a fall. I hit my head early in the morning December 3rd. That’s just weird…and unnerving. It cannot keep getting worse or I will be catatonic. The doctor wanted me to see a neurologist. He isn’t available for 2 months!?!? I might be heading to the ER sometime. Each day I wait to see if I will be better, but it’s not happening. Sigh….you all know how much I love the ER….NOT!
Christmas Eve….I got taken to a buffet. Now that I have a walker, buffets are easier. I can gather food and carry it on the seat. I didn’t wobble much in public and nothing scary happened. I needed that boost in confidence! All the resting must have helped. Later, my head and neck hurt quite a bit. I promptly slept for 5 hours. The dang head pain woke me up.
Christmas…I traveled to the home of friends near Big Cottonwood Canyon for Christmas brunch. I helped cook sourdough pancakes. I did pretty well today. It was only after I finished cooking the pancakes that my body started seizing up. My legs felt like lead. Last night and so far tonight…no sweats! Wouldn’t it be nice if this feeling better lasts? My head still hurts from light, noise and different positions, but it’s nowheres near as intense. It was wonderful to have a respite from so much pain!
26th….During the time I was with friends, I did OK, but now I am feeling more icky and zombie-like. I am soooooo weak! I think I used up too many of my spoons. Well, it was fun while it lasted. I have always had the ability to kick into adrenaline mode for awhile, then pay for it later. Like an idiot…I decided to move furniture. Why can’t I just sit still!?!? Now everything hurts even more…but I feel better about it.
27th…Yesterday I had my usual tongue fasiculations when I got too tired after all the socializing. Today I had them in my legs for over an hour. The fasiculations happen whenever I have over done or just happen to be going through an extra weak phase. I did laundry upstairs. By the time I got back to the apartment I was both soaked and dripping sweat. No matter how many times I towel dried my hair, it was soon back to dripping. I was so hot it felt like I would never cool down. I needed oxygen but each time I put my CPAP mask on, it slid and sputtered. I finally gave up, held it in my hand and pointed it at my face. It seemed to take forever, but all at once I cooled down. That’s when the fun started. It was the most massive display of fasiculations that I have ever experienced. Both legs, their whole length. It felt like popcorn popping all over. It was both fascinating and disturbing. A few times it tried to morph into mind altering cramps, but then would ease up. I have had fasiculations all over, but it primarily happens to my tongue, throat and mouth. It’s a very weird sensation!
28th…My eyes are drooping from MG, my cheeks are rashy from lupus and I look way older lately from so much illness and stress. I went grocery shopping. The whole expedition was too much for me. I was again so weak! After I put away the groceries, I have mostly just sat here trying to recover. Everything hurts. At this moment, nothing is horrible. The leg and head are bearable…sort of. That’s a good thing, right?
29th…Too much stuff is going on in my life. I tried to fix things, I tried to just endure others. Now all I want to do is pretend that nothing matters. I feel like going numb, turning off my feelings and retreating to someplace in my head where the pain and frustrations don’t exist. I made pizza from scratch. Read this and had a good laugh 🙂 Old McDonald and MG
30th…Ever since West Nile Virus, my right shoulder has hurt. Sometimes it’s excruciating. There is no way to position myself that takes the pain away. I need a better way to sleep! I never ever get enough quality sleep. I moved around furniture to try to remedy that.
31st….I slept much better last night and for a 3 hour nap this afternoon. But…I feel yucky. Yesterday I had ringing in my ears most of the day. Sometimes it was so loud that other noises were drowned out. Today there is less noise, but even more pain. Once again, I am back to all the roots of my teeth on the left side hurting. My cheek and eyebrow are throbbing. There is pressure in my skull on the left side. I was super dizzy yesterday. I knew I was being an idiot by moving furniture, but I was desperate for sleep. That got me sweating and I sweated like crazy all night and most of today. I am sooooo tired of all my symptoms coming and going! But I am thankful for the reprieve when they go!!!
This is Part 1…How West Nile Virus Happened To Me (In 2012). It was a very challenging year. It can only get better…..right????