Oct 19, 2009
Hi, My name is Tina and I am new here. This is going to be a long story, but I hope and pray someone will have the patience to read this and tell me any thoughts you may have. You might want to grab a cup...or the entire pot of coffee first!
I am a 40 year-old married mother of 4. I live in Texas and homeschool two of my children. I've been married 20 years to my sweet husband. When I was young, I was very energetic and was always going places and doing things with my family like camping, fishing, ice skating, canoeing, hiking, etc... My hobbies are painting, scrapbooking, crafts, sewing, and reading. For years I was actively involved at my church and with homeschool related outings and projects. My kids always enjoyed their special, "Mom and me date" time each month for years. We have very active kids, despite a few challenges they have. We have always been the type of parents that push our kids to do their best and are always right there with them all along the way.
Two years ago, my husband and I adopted a special needs little boy from China. I traveled to China alone to get him, which started an entire plethora of health problems. Some of these were old problems that had previously gone away and some were new issues that I had never dealt with before.
This past Thursday my husband rushed me to the emergency room with severe chest pain. I'm not sure who was more scared, him or me. When we got there it was packed, but they took me straight back and started hooking me up to monitors. Apparently they don't take chest pain lightly! My pain was intense and felt like someone was squeezing the life out of me. I thought I was dying! On top of this squeezing pressure I had hot, stabbing poker pains in an area right above and to the left of my heart. It literally felt like someone was walking up behind me and running a hot poker all the way through me in one spot, over and over. My pain seemed to radiate up into my left collar bone, into my neck and head and down my left arm. When I lay flat, it felt as though I couldn't breathe. They put a nitroglycerin patch on me, gave me an aspirin and started an IV. They did an ECG, which was negative, drew blood and brought in a chest x-ray machine. theyadmitted me right away to the CDU where I was hooked up to a heart monitor and kept overnight for observation.
The next day my doctor had a cardiologist come to see me. He did a stress test the next day, an echocardiogram, and a CT scan with contrast. Everything was normal, but they decided to watch me one more night. The cardiologist said he thought I might have costochondroitis and pluerisy. After supper that evening I developed cramping and nausea and ended up throwing up and having diarrhea all night. My blood pressure dropped to 70/49, so they made me get up and eat. They released me after two days with no diagnosis except probable costochodritis and pluerisy. So this was this past weekend for me Thursday, October 15 - Saturday, October 17 and I am still having chest pain and fatigue and other problems and searching for answers. My doctor wants me to see an internist.
Let me start at the beginning.
When I was a little girl, I was sick all the time. When my sisters and friends were out playing, I was quite often on the couch or in bed with a cold and strep-throat. My mom says I had strep-throat more than I didn't have it. I remember that I lived on Keflex at a time that doctors weren't concerned about rotating antibiotics or creating antibiotic resistant bugs due to overuse. When I got sick at the same time as my sisters or friends, they were well within a week, and I was sick for three more. Every time we went to the doctor he told my mom I was anemic and told her to put me on daily vitamins with iron and to make me cow liver at least once a week. My mom trying to get me to eat that liver was something I will never forget!
During puberty, I had several bouts of horrible leg pain and severe menstrual cramping and bleeding. By the time I was 16, my mom had to take me to a doctor because I couldn't function for one week out of every month. He laughed at me and told me to stop being a "complainer" and that I needed to understand that all women have periods and cramps, it is normal, and that I would need to stop being a cry baby and learn to deal with it. It was the first time I had been talked down to and not believed by a doctor, but it wouldn't be my last. At the time I thought I was weak and was a complainer and was very embarrassed. I did learn to deal with the severe pain, and even excelled on my track team in high school. After watching how other girls reacted to their cramps, I made sure I didn't overreact so they wouldn't think I was a "complainer."
When I was 18, I was married and became pregnant with my first child. It was so wonderful to not have the severe cramping anymore! The pregnancy was normal and wonderful until the 6th month. One day I became so cold that I kept piling covers on, yet couldn't get warm. I wasn't sure why I was so cold because I wasn't sick. After turning the heat up, I still couldn't get warm. When my husband came home from work and felt how hot I was, he panicked, carried me to the truck, and whisked me away to the ER.
When we arrived at the ER, the waiting room was packed. They asked if I was in labor and I said no. They wanted us to wait, but my husband was freaking out, so a nurse came out to check me. When she felt me she panicked and rushed me into a little room to take my vitals. My temperature was 105.8, but I had no other symptoms. They rushed me into a room and several people were yelling and running around me. The fever made me go into early labor. After many, many tests, including an amniocentesis, they couldn't figure out why I had fever. They did manage to stop my labor. I don't even remember any of this, my husband had to tell me later, and I was able to go on to have a healthy, full-term baby boy. I didn't make it to the hospital because we lived so far away and had to take a ferry to get there. The physician's assistant told my husband earlier that same day that it would be hours after my water broke before the baby came and so he was waiting for my water to break to take me back in. I had our son in the middle of the night in front seat of our brand new pickup truck on a ferry in Galveston.
The severe abdominal pain started again once my son was born. We moved several hours away, and I had to find a new OB/GYN. One year later I had a positive pap and ended up having a biopsy of my cervix and then cryosurgery. The doctor was very cold and didn't even give me anything for the pain. When I told him about the painful bm's he said I needed more fiber. When I told him about my depression and some of the other symptoms, he sighed and asked me if he needed to get a bigger paper to write all my complaints down. I decided I really didn't like doctors and didn't want to ever see one again.
Two years later when I was 21, I became pregnant and got very sick and miscarried. After this, I was sick all the time and feeling more and more depressed, fatigued, and achy. It seemed to come in spells. Sometimes it would last a few days, sometimes a few weeks. Then I started having pain with bowel movements. It felt like glass moving through my colon, and my bladder hurt when it got full, even when I didn't have an infection. Even though I was experiencing horrible abdominal pain and spells of depression, leg pain, and fatigue, I was still very active with my husband and son. It became a normal part of living for me. I wasn't going back to a doctor ever!
When I was 23, I became very sick with diarrhea, severe abdominal pain (more than usual) and nausea, and low-grade fever. After having this for an entire month, I gave in and let my husband take me to my local Care Plus clinic. After looking me over and taking my vitals, he told my husband to take me to see a specialists. He called and got me in that day to see a gastroenterologist. He actually did a flexible sigmoidoscopy in his office! My guts were so raw and sore, and I thought I was dying right there on the table. After the exam, he sent me to be admitted to the hospital for more testing. There were so many tests that I can't even remember them all. I do remember that there was even a colonscopy at some point in the 5 day stay.
The gastro doc didn't find anything and sent a gynocologist to see me. This new doctor did several tests that were all negative as well. He told my husband that he wanted to open me up; do an exploratory on me to see what was going on. (in hind-sight, this might have helped diagnose my endo earlier) When my husband heard this, he said he wanted a second opinion. He walked over to the physician building and went into the first doctor's office he came to to ask the doctor to come see me. He was a family doctor, and he agreed to see me after his last patient. After he asked me my symptoms, he said it sounded like I had food poisoning. He ran tests and found that I had salmonella. After antibiotics I was better and very broke after being run through the mill. Up to this point we still had no medical insurance, but we had a new doctor that we trusted!
Two months later I found out I was pregnant with my third child. I was excited about having another little one, but also because I knew I wouldn't have painful periods for 9 months! We decided to let our new family doctor be my obstetrician. My symptoms became worse, I developed a bladder and then a kidney infection, became fatigued and my legs and feet hurt so bad that it hurt to walk. At two months along I began to miscarry and was admitted to the hospital and put on IV meds to stop labor. After spending several days there, I was sent to see a high risk OB/GYN. He asked me to tell him my health history so he could treat me better. After telling him, he told me that none of what I told him could cause me to have premature labor, so he sent me back to our family doc.
I had a bladder infection every month and severe pain when I went to the bathroom and when I walked. When I would have an episode of painful legs and fatigue, I would stay in bed because I was afraid I would miscarry.
It was the most miserable time of my life up to that point. My doctor had me on prophylactic antibiotics for my bladder for the duration of the pregnancy, stool softener to help with constipation, vicodin for the pain, phenergan for the nausea and vomiting, and brethine to keep me from going into premature labor. He assured me they were all ok in pregnancy, and I just prayed that none of it would hurt the baby.
She ended up coming a month premature. The doctor couldn't stop her. I had her natural with no epidural or meds. As a matter of fact, the nurse delivered her because I was so quiet and didn't realize I was fully dilated because I had learned to push through pain over a long period of many years. When I asked her to check because something felt different, she was shocked that my daughter was crowning. There was no time for the doctor to get there.
After the birth of my daughter I began having more weird symptoms. My feet and hands would get pins and needle feelings and go numb for no reason. I would get so dizzy that I couldn't drive and sometimes when I walked it felt like I was on one of those carnival tubes that spins and the floor was moving.
Sometimes my vision was blurred when I got dizzy and I had pain in my eyes, like pushing feeling behind my eyes. My bladder infections slowed down, but were still happening about every 3-4 months. The weird symptoms seemed to happen when I got really tired and had the leg pain. This was on and off about every 6-8 months or so. It wasn't so bad that it stopped me from doing what I liked and spending time with my kids and husband.
When I was 25 I had one of the worst episodes up to that point. The fatigue was horrible, the pain in my feet felt like there was no fat or muscle, just bone with skin over it. My knees and hips were achy as well. My leg muscles felt really weak. My hands and feet got pins and needles feelings and then went numb and back and forth. Sometimes I would feel electric like shocks in my toes and fingertips. It felt like it does when a doctor pricks your finger. I felt like I had a head cold without the coughing and mucous, like my head was in a bubble and I couldn't pay attention to what was going on. It felt like that entire time wasn't really happening, but it was playing on a movie I was watching.
My period stopped and it started to burn when I went to the bathroom so I went to see my doc. He said it all sounded stress related and that I might be pregnant. The test was positive, I was pregnant. A few weeks later I started to miscarry and I was back on the same track as I was with my last pregnancy...all the problems and drugs and misery. This time though, I began wetting my pants when I threw up and when I sneezed, etc...
My daughter came a month early just like her sister, and I had her natural as well. I decided to breast feed this little one and did so for 13 months. During the time I was nursing her I had a relatively calm life. My periods were gone the entire time, which was a blessing! The painful bm's and pain with a full bladder didn't go away.
When she was 13 months old I began having a terrible episode with all of the symptoms I had had so far and new pains I had never experienced before. My back went out and I couldn't move. They told me at the ER that most people do not like the feeling they get from the steroid. It was a miracle drug to me. All the pain in my back, feet and legs went away, the brain fog went away, blurry vision went away, it was amazing! I had so much energy, mental clarity, and I was cleaning the house like a crazy woman. My husband wanted to knock over a pharmacy and steal all their steroids. I stopped nursing my daughter since I was on medication.
About a week after I was done with the steroids I became extremely depressed and started having symptoms again. Not sure what order it was in...whether the episode caused me to be depressed or if it was a symptom too. The doctor said it was late post-partem depression because I had stopped nursing cold turkey. He prescribed me an antidepressant, Elavil. I was on this anti-depressant for several months. When I had another episode, it didn't matter much to me. It didn't seem to hurt as much, or I just didn't care as much, not sure which. He tapered me off the drug.
The years between the birth of my daughter and the slowing of my episodes are a bit blurry, but I will try to connect the dots as much as possible. Between 1995 and 1996 things got really bad. My depression and painful episodes returned, my husband got sick and tired of me being sick and tired and never wanting to be intimate. He wasn't helping with the kids and was spending long hours away. I couldn't ever enjoy being intimate for so many physical reasons. I gave up even trying to have a normal life and gave in to the pain and became someone I didn't like. My husband and I separated and I tried to make it on my own with three kids, depression, and pain. It was a very dark year in our lives with many bad things happening.
In 1997 ( age 28), my husband and I decided to try again. He decided that no matter how bad it got or how much I couldn't do during my episodes, or in our private life, he would be there for me. We also got on good insurance for the first time in our lives.
From 1997- 1998 I was the pain in my abdomen had gotten so bad that I cried during BM's and kept ice packs in the freezer to hold on my stomach when I went to the bathroom. There was also a new pain in my left side that felt like a knife was being stabbed right under my ribcage. I went to my doctor again and again and he was diagnosing me with this and that with no tests and throwing all kids of meds at me. Finally, he sent me to a gastroenterologist because he thought I had some form on intestinal disorder (here we go again). The gastro sat across from me, didn't even look at me, and diagnosed me with IBS and gave me a prescription. He was in there with a new patient for less than 5 minutes. Needless to say, the medication never worked.
After a few weeks of pure misery I was contemplating killing myself to put me and everyone else out of my misery. I went back to my family doctor very angry. I refused to sit on the bed. I sat in the chair, started to cry, became hysterical and started screaming at him! I demanded an answer. I demanded an exploratory surgery to open me up and see what was going on in there. It was the first time in my life that I didn't care what I said, who I said it to or what they thought of me. He sat there wide-eyed in shock. This had been my doctor for 6 years who knew me as a shy woman who never questioned anything he said. He left the room and made a couple of phone calls. He set up an exploratory laparoscopy for the next day that he and an ob/gyn and a gastro doc would be in on, much to my surprise.
The surgery revealed endometriosis throughout my abdominal cavity, on my intestines, wrapped around my bladder, etc..., adenomyosis, and two adhesions, one that had grown almost completely around my intestine and was attached to my left bottom rib. They were shocked at how bad it was and that I had adhesions even though I had never had surgery before. They removed all they could. When I woke up, my doctor apologized to me several times for not helping me sooner. The OB/GYN said that if we wanted any more kids we better have them soon because my uterus was getting bad.
The next couple of months were pure bliss. I didn't have depression or fatigue or any symptom for several months. Then the pain started all over again slowly, but then it increased in frequency and strength. Exactly one year after the first surgery when I was only 29, I had a hysterectomy by a specialist my husband found in another state that was doing a new type of double surgery to insure no endo remained. That was 11 years ago and I've never had the same abdominal pain or pain when I have stool moving through my intestines again. I wish I could say the same for the "episodes" as I called them back then.
Over the next few years my episodes came and went at weird intervals and came frequently. It was hard to figure out what the triggers were. Sometimes if I was out in the sun, or got a cold, or just got stressed I would have one, but there were other times that I could be in the sun and get sunburn and not have one, or get a cold and not get an episode. A new symptom, heartburn, was making eating no fun anymore. I was living on Malox. My doctor sent me to an internist to try to figure out what was going on with me.
He ordered an MRI (without contrast) of my head neck and spine and lots of blood work. The MRI didn't show anything but mild scoliosis, but my blood work came back with high ASO antibodies, even though I had not had strep in years and I had had loads of antibiotics between the last bout of strep and this test. Tests for Lupus, RA, Lyme, etc... were all negative. Test for GERD (upper GI) was positive. I left the internist with a diagnosis of Post-streptococcal Reactive Arthritis and GERD and prescriptions for prophylactic antibiotics for the strep, aciphex for the gerd, and celebrex for the pain.
A few months later I went to my family doctor for an especially bad episode that wasn't resolving on it's own that he believed I had Lupus, even though the bloodwork was negative. He put me on prednisone and sent me home with a diagnosis of Lupus. The prednisone made me feel like a human again, and I felt great. While having this feeling that nothing was wrong with me, I drove to Houston to see a Rheumatologist about my family doctors diagnosis. he ran his own tests and once again, they were negative for Lupus and all the other autoimmune disorders. he said my family doctor should have never diagnosed me and that he was wrong.
After a few months off of the prednisone I was having another flare and was really sick of the entire doctor/medication process and all its ramifications. I found a holistic doctor in Austin and drove three hours to see him. He started me off on a cleanse that I thought would be the death of me. I was so sick and vomited several times daily, had diarrhea, stomach bloating, and was so tired and achy. It was the first time in my life that I've ever had horrible headaches. He wrote a list of foods to eat and not to eat while I was cleansing and told me what I could add back in when. He gave me many herbals and enzymes to take. He told me to stop taking my nightly long, hot baths because they were not good for my body and told me to get all of my mercury fillings removed (which I could not afford to do).
After all of this I began having more energy and feeling better than I ever had, but it was all so expensive. I had to stop taking the enzymes and herbs, but I was still feeling better! I changed what we ate, how I cooked, etc...and started using herbals as a first-line defense against illness and only going to the doctor when this failed. We exchanged lots of fruits and veges for all the carbs we were eating, stopped frying foods, started using olive oil instead of margerine, etc...Probiotics became a new thing in our household. My episodes dwindled down to one per year or so. I became very active at our church and participated in bible studies and went to conferences, etc... Learning to pray and ask for prayer became such a comfort for me.
In 2001 when I was 32 I found a lump in my breast the size of a pea. The doctor sent me for a mammogram which showed several lumps in both breasts. They took me straight over for an ultrasound which showed several cysts in both breasts and a solid tumor in one (the one I felt). They sent me for a biopsy the next day and it turned out to be a benign fibroadenoma. They said I didn't have to have it removed unless it was bothering me, so I decided at that time to leave it. Nine months later it had grown to be 5cm, and they recommended I have it removed to see if any cancer had grown on the adenoma because it had gotten so large so fast.
In the spring of 2002 they removed a benign tumor the size of a baseball from my breast. When I woke up in the recovery unit I began to have an episode and could barely walk out of there. For two weeks I was hurting, dizzy, incoherent, couldn't see straight, had numbness and tingling in my hands and feet, began feeling like I had to hurry to the bathroom, but then I would just sit there and not be able to go. But, I made it the two weeks without having to take the prednisone, and the flare went away on its own. That fall I wouldn't be so lucky.
In the middle of August of 2002 when I was 33, I had a bad flare after spending the weekend out in the 100 degree weather at the lake. While driving home I could feel the symptoms coming on. It felt like the flu at first with body aches, headache, dizziness, weakness, pins and needles, etc... all the usual culprits. The road started to move out from under me sideways and I nearly wrecked our car with the entire family inside. I had to pull over and let my husband drive. By the time we got home I was so weak I didn't think I would make it out of the car. I wet my pants before I got into the house, even though I didn't feel like I had to go until I was walking through the door.
After three weeks with the flare getting worse, I could no longer walk. My husband had to borrow a wheelchair from his family. My vision was so bad that I couldn't focus on anything and sometimes I felt cross-eyed. The fatigue was horrid and sometimes I slept for 15-20 hours at a time. I would sit there and play with my fingers that were going numb because they felt so odd, like they weren't a part of my body. The crying was really horrible too because my kids couldn't understand why mommy was crying. I just lay there in bed depressed and mad.
People would pray for me and I would lay there thinking that I wish they would just go away and leave me alone. One lady from church told me that I needed to repent, that if I had prayed with a truly repentant heart, Jesus would have healed me. I won't write here what I was thinking of her and what I wanted to do to her. I ended up back at the doctor with another prescription of prednisone. I was feeling better by the next day and wondered at my stupidity for waiting so long.
A few months after this, I was still having trouble with incontinence, so my doctor sent me to see a urologist. The urologist asked me to tell him all of my symptoms (which I hate doing) and after I did, he had an explanation for all of them.
Fatigue - stress from running around with 3 kids
Depression - from not taking time for myself and not thinking positively
Dizziness - low blood pressure (which I ALWAYS have, not just during flares)
Vision problems - from the headaches
Memory lapses - stress related
numbness and tingling - laying down too much, causing pinched nerves
incontinence- from giving birth three times (even though in the beginning, it only happened during flares)
constipation - from inactivity when laying down too much
there's more, but I can't remember
And all this stemmed from stress at home. His answer was that I needed to relax more, be more positive, take time out for myself, and get up and walk or jog when I am feeling what I call a flare. He then had the nerve to tell me that he wanted to do surgery on me because he was positive my bladder may have fallen while giving birth and he wanted to tack it back up. I've never run so fast from a doctor's office in my life!
One day I began having pain in my big toe that kept getting worse. It felt like it was on fire, or like a hot poker was being run through it. This was a new pain I had never felt before. I was determined to push through the pain, but it got the better of me after about 5 hours of increasing intensity and spreading up my foot. My husband took me to the ER. By the time I got there, it hurt to even touch it. The sheet on the bed hurt to even brush against it. The doctor thought it might be gout. After the excruciating x-ray and the blood work were back, the doctor talked to me like I was there for narcotics. You know...like I had a problem and needed my fix! I told him I didn't care what he did, to just make it go away even if he had to saw the %^&* thing off at the ankle. He gave me a shot of demerol and one of a steroid. It went away and I've never had it since!
We switched doctors at this time because our doctor was prescribing medication each time our kids came in for a well check-up. He seemed to think they needed drugs for every little symptom they had. We also switched private insurance companies around this time as well because our insurance was going to go up $300 the next month. When we applied with a new company, they refused to accept me because our doctor had so many diagnosis written in my records. There were diagnosis in there I had never even been told of! If i said I had dry eyes, it became sjogren's on paper. I had pain in my abdomen, I had diverticultis. My tingling was diagnosed peripheral neuropathy, and on and on and on! So, now my family is insured, but I am not.
After all this, my flares seemed to have stopped in around 2003. Every now and then I would get tingles, pins and needles or arthritis type pain, but it never lasted long and it was so minimal. Each time I would get sick or start to feel bad, I would start to panic, worried it was going to be a full-blown flare, but it never was. I felt like maybe all the vitamins I started taking were really starting to help me.
I began homeschooling my kids and having a blast doing it. We joined co-ops, went on field trips, went ice skating weekly, and I was always finding exciting projects for the kids to do and gathering items we needed. I read each book before they did, dug up interesting learning games and printed off outline maps of each place we studied. I took my kids to a camp where I joined them hiking and riding a zip-line. We traveled all over while they participated in archery and ice skating tournaments and saw neat places like the Laura Ingalls Wilder homestead and museum after we read the Little House books. It was a great 4 years!
In 2005 some ladies from church talked me into signing up to be in a study of bioidentical hormones at UT Tyler. They accepted me into the study because of my previous hysterectomy. They did some extensive testing on hormone levels such as TSH, FT3, FT4, cortisol, luetinizing hormone, estrogen, progesterone, etc... probably more I can't remember. All of my thyroid panel came back normal, but my cortisol was all over the place...low in am, ok at noon, low at 5 and off the charts high at 9pm, and I am estrogen dominant, even though I have no uterus and only one ovary! They put me on progesterone cream, which helped me actually have more energy throughout the day for about a month, then started tapering off and didn't seem to help anymore.
In 2006, when I was 37, I found out about a little deaf boy in China who desperately needed a home. He was 9 years-old and would be pushed out onto the streets when he turned 14. There is not much hope for a deaf child from an orphanage to succeed in China. It was too much for my husband and I to bear, so we decided to bring our little guy home. Our 18 year-old son at the time (my first homeschool graduate) was out of the house and at college, so we had the extra room. We had our home study and I dug in and tackled red tape, paperwork, embassies, etc... to get our dossier ready in time.
One year later in 2007 I traveled to China by myself to get our little boy. The flight there was long and cramped, but I was so excited! The next morning I awoke very achy and tired, but I think it was just jet-lag. The second day in China our group went sight-seeing and climbed the Great Wall. Since I'm an avid walker, I had no problem making it to the top. It was very overcast and smoggy there. My chest started to feel like someone was squeezing me real tight and then I had a pain that felt like someone shoved a hot poker through my back and through my chest. My guide asked me if I was ok, and I told her my chest hurt. She said that it was probably due to the smog and that many visitors got chest pain due to the smog, so I shrugged it off.
That night in my hotel room I woke up sweating, which I never had before. I'm usually always cold constantly. It felt like my body was going to burst into flames. It was the weirdest feeling I had ever had. My chest hurt too and I started feeling achy. I thought it must be jetlag since I had never had jetlag and didn't know what to expect. I would go on to have this sweating and chest pain for the next 4 months.
After being home for a month, I began coughing and then had a flare. The doctor took a chest x-ray and said the burning, stabbing chest pain must be pleurisy. He told me to take Advil. A month later I was still having chest pains on and off and the doctor said he thought it might be bronchitis and gave me antibiotics.
I didn't have my next flare for several months, even though the pins and needles were there nearly daily and the chest pain would flare once or twice a month. The next flare brought back and neck pain with it and balance problems. It hurt to move anything and I was so off balance and dizzy. It became harder and harder to sleep at night because I developed restless legs and would climb the bed. My legs felt like they were buzzing or vibrating and little bugs were crawling all over them. There were days and nights when I would start itching all over but had no rash and benedryl never helped. My doctor called in prednisone and it all went away for a few weeks. The bad flare didn't come back, but the itching, restless legs, vibrations and crawly feelings remained off and on.
In August of 2008 I had been really having increasingly bad bouts of fatigue, numbness and tingling, and cognitive problems. there were so many times that i just couldn't remember names, dates, or words. I was depressed and biting everyone's head off. When I began researching on my own what it could possibly be, I came across B12 deficiency and asked my doctor to test me for it. He said he really didn't think I could have it because I am too young. he said all my symptoms could be stress related, but he ran the test anyway and it came back positive. He started me on B12 shots weekly, then monthly. It really helped with fatigue the first week I had the shot and I noticed that my anger issues went away and I seemed happier. When it got close to the end of the month, I would get more and more angry at my family and began doing less and less. They would ask me if I forgot my shot at the end of each month, or ask me when it was going to be time or if I could please take it early.
I noticed it cost quite a bit each month for the shot and asked the doctor to let me self inject. They taught me to do this myself and I've self-injected for about a year now. It did seem to help quite a bit for several months until the spring of last year when I started noticing that even with the shot, I would get tired and have numbness, weakness, and pins and needles, even though my blood work showed my B12 was fine.
Last February (2009) a friend asked me to join a citizen's fire academy class. She said it was so much fun and I needed to get out of the house. I joined and had such a blast! We were learning really neat things about the emergency services in our town and working our way towards doing a live burn at the fireman's training school. We were fitted for real fire gear, learned to chop off car roofs with hydraulic equipment, and we learned CPR and First Aid. I was too sick to do the ladder climb, so I missed that class.
When the agility training came up I was so excited! We were going to get to suit up with a mask and oxygen tank and crawl through dark buildings with fake smoke to find unconscious people to rescue. Then we were going to get to drag a weighted dummy, climb a 4 story building with a fire rope, etc... I went into the dark building and felt my way all the way through, no problem. It was really exciting! It was very hot outside and even hotter inside the buildings and inside our gear. By the time I got to the second house, which was dark and smoky, I was starting to feel out-of-breath and dizzy. After crawling half way through I started to feel my chest get squeezed and I was hurting all over. One of the firemen in night vision goggles carried me out and started pulling off my gear. I was so hot and thought I was going to pass out. They had me lay down and began putting cool clothes on my face and skin. After laying there awhile I really wanted to try to finish the course. I had waited so long for this! When I walked over to the next station my legs felt like jello and I was so dizzy that I threw up and had to go home. On my way home I just kept telling myself I got dehydrated and I would be ok, but I wasn't ok and had another flare and missed almost all of the rest of my classes. In March I turned 40 and went to my surprise birthday party sick and tired and pretended I was happy to be there.
In April, the flare was still going on and our 20 year anniversary trip to Galveston where we met was coming up. My doctor called in more prednisone so I could make it, and I left feeling terrible and hoping it worked. It did and I had a wonderful time with my sweetheart, but I did have back pain and neck pain throughout the trip and needed ice packs to ride in the car for the long drive.
In June, I went to my doctor again feeling really bad and getting nervous that I was having so many flares that wouldn't go away on their own and were getting worse. Now I was experiencing numbness and tingling in my face. It felt like I had been to the dentist and he shot my entire left side of my face up with novocaine. My lip was drooping, I had prickles on my skin on my face. It felt very weird. I was rushing to the bathroom in fear that I wouldn't make it, and sometimes didn't. Other times I would rush there panicking that I wouldn't make it and then ended up sitting there forever before I could go and barely anything came out. The constipation was getting worse. I was having horrible chest pain that felt like someone was squeezing me at times, and like a hot poker was being run through me at times. The pain went up my collarbone and into my neck and down my arm at times, which was scary. The hot flashes were getting worse as well. I called our doctor and he said to come right in.
When I got to the doctor's office, he was very concerned about the chest pains. He called the nurse in to run an ECG. When she was doing the test I got dizzy and had a hot flash. She felt my arm and ran out to get the doctor. He said my skin was cool and clammy, not hot, and that it seemed as if I was having symptoms of heat exhaustion or dehydration. The nurse brought in cold washcloths and bathed my face, neck and arms. The ECG was normal, but the doctor wanted me to see a cardiologist. Before I left I got really nauseous and was in the bathroom on the nasty floor. Ok, it didn't look nasty, but it is a doctor's office and I cringe at the thought. When I got home I had diarrhea and stayed in bed for days. I didn't go to see a cardiologist because I didn't feel like I was at risk. My bp was always around 90/60, my cholesterol has always been very low, I don't smoke, rarely eat fried foods or red meat, etc... And also because I don't have insurance and was scared of being sent on the doctor/test bandwagon again with no diagnosis but huge bills.
That month my mom came to visit from Indiana. I had not seen her in three years and I was so excited to see her, even though I felt really bad. My house was a disaster because I was too tired to clean it. The visit was very short, and I felt jipped because I was feeling bad. In July, my husband made me buy a plane ticket to go visit my mom for two weeks while our youngest son was away at camp. We made plans to travel from her house in Indiana to her family's summer retreat in Michigan. We had always gone there as kids, and it has always been a happy place for me with so many wonderful memories.
On the sixth day I was there we went canoeing and hit a large tree in the water which knocked us over. I flipped out of the canoe and smacked my lower leg on the trunk of the tree. It swelled up and turned black and blue immediately. It hurt to walk on it and my mom and step-dad wondered if we should go to the ER. The river was icy cold, so I just hung my leg in the water and finished the canoe trip. that evening my head started to hurt like it's never hurt before. I was having stabbing, burning, shocking pains in one side of my head that came each time I moved or bent over. I'[ve never been one to have trouble with headaches unless I had a cold or flu, but this was unbelievable! When we went to do things I was limping and trying to walk and not move my head.
By the end of the week I was too fatigued to go to the lake with them anymore and I stayed in bed most of the time. Noises hurt my head and my leg felt like it was literally on fire. My mom freaked out when I told her the left side of my face was tingly and my lips were numb, so I didn't tell her I was feeling anything after that. When we got to the airport for me to fly home, they had messed up my ticket and I had to wait on standby. My stomach started to hurt and I ended up nausea the entire time. When I finally boarded the flight, my stomach was cramping and ended up with diarrhea (poor people on the plane using the bathroom).
When I made my connecting flight, it was a tiny plane with no bathroom and I was really nervous! It was only a 45 minute flight, and thankfully, I didn't have an accident. When my plane landed my head was pounding so hard that I felt like crying. My kids and husband were so happy to see me, and a friend of ours that was visiting from Germany came to see me at the airport. It was all really foggy and didn't feel like it was happening. When I got home, I don't remember getting from the car to the house, but I remember laying on the living room floor with a cold wash cloth on my face, ignoring everyone and wishing they would stop talking and leave me alone.
The next day my headache was still there. My house was in worse shape then when I left, even though I had asked that they please clean it before I came home, or at least keep their own things picked up. I drug myself out of bed and staggered down the hall to find the dog had dug through the trash and had it strewn everywhere, every dish in the house was dirty, the stove had crusted on food all over it, the floors were filthy, etc... etc...., and my kids started to argue and fight and then tried to tell me all the things they thought were unfair about things that went on while I was gone. Something snapped inside of me, I said a few foul words I NEVER say in front of my kids, grabbed my bags that were still packed, threw them into the car, went to the bank and pulled out lots of money and headed to the airport in Houston to get on a plane to anywhere. I was crying and cursing and breathing hard. My chest was killing me and I could feel and hear my heart beating in my head and it felt very hot. My cell rang several times...it was my husband, my kids, my mom...I just turned it off.
As I drove 70 on the highway I thought about crossing into oncoming traffic and just ending it all, but I wouldn't do it because I didn't want other people to get hurt. I thought about getting a hotel room and taking every pill I had and never waking up again. There were just too many bad days now and not enough good ones in between and I was tired. Sick and tired of being sick and tired. I felt very hot and sick, so I actually stopped at a car wash, got out and washed my car so I could feel the cool water on my skin. After getting back into the car, I sat there crying and knew I needed to go home and straighten things out. This wasn't like me and I felt so guilty for scaring my kids.
The next day I went to see my doctor again and told him what had happened and that I think I need antidepressants because I can't cope with this. He said he wanted to do some blood work to see if it was thyroid, B12 or hormone related first. he gave me a new prescription for prednisone that had several refills. As I waited for the results of the blood work, I began feeling much better on the prednisone. The house got cleaned, we went shopping and bought school clothes, i took the kids out on mom-kiddo dates like we used to, and I worked very hard to get things organized. I made lists and plans and set new goals and felt positive. (which is how it usually is between flares) the blood work came back normal and I never called to ask for the antidepressant because I felt better.
Two weeks later I got the flu. This flu was horrible and lasted through September and into October. There were days when I had fever of 104 and couldn't lift my head off the pillow. My entire family got the flu except my husband, who never gets sick. Each one had it for about a week, but our little guy with the impressive immune system only had it two days. I had it for a record 7 weeks. There were times I went to bed and didn't wake up for two or three days at a time. The chest pains came and went with differing intensity and my headache was in full force the entire time with pounding, stabbing, and shocking pains in the same place as before. My chest got congested and I ended up with bronchitis. This all led up to my most recent events which are at the beginning of this story.
Some of the things I can remember over the past year or so: I started dropping things all the time. I dropped a full carafe of coffee and almost broke it because my hand gave out. I can no longer open jars or hold a screw driver still. I had to set down a friend's baby because I felt my arms go weak. My coordination got really bad off and on and I started tripping on nothing. My kids laugh when I make up imaginary things I tripped over. I was forgetting words and appointments. I got off schedule and was not reliable. I was yelling at the kids and my husband and crying over dumb little things. I would forget how to do simple tasks that I had done all my life. I'm sure there's more I am not remembering. The long, hot luxury baths I used to take have stopped because I get sick from the hot water. Same thing at the gym. I used to get in the hot tub at the gym to relax sore muscles but got sick afterward.
I get very energetic when I'm not flaring. I make plans and lists and set goals and clean and organize and laugh and play with the kids. When I flare I break plans or just forget them, I stay in bed crying or sleeping and wish life would just go on without me. The house gets messy, the bills don't get paid, and I avoid phone calls. When I talk, I forget so many words. I was trying to ask the girls where my apron was and all I could get out was, "Where's my...my...my....that thing I wear when I'm cooking?" They laugh and think it's funny. I laugh for them, but it scares me because it happens too much.
I start a sentence and can't finish it. I nearly burned down the house TWICE because I put oil in a pan and left it on to warm so I could saute onions then walked off and forgot I was cooking. The girls now cook with me or for me to be safe. I've lost so many friends that don't understand why I am ok one day and not the next. Some days my vision is fine, some days I can't focus my eyes. I can feel sensations of pain, hot and cold in my fingertips, but they have become less sensitive and I have burned them or cut them without knowing. My kids freak out when they put their hands in my dishwater to test it because it is hot enough to scald me, and they add cold to it for me.
So...here are the symptoms I have had so far...that I can remember right now:
irritable and angry easily
short-term memory lapses
forget how to spell or punctuate or use proper grammar (which I have been a stickler for in the past)
lack of coordination
loss of balance
headaches (hot poker feeling, bulginf heartbeat feeling)
buzzing and hot poker feelings in ears
muscle weakness, mostly in legs, but sometimes in hands
muscle spasms and twitches, mostly annoying, but some are accompanied by electric shock type pain
tripping and stumbling
joint pain in hips, knees and feet
numbness in the left side of my face, arm and hand
pins and needles
bone spurs in cervical spine
pernicious anemia (monthly B12 injections)
creepy crawly feeling on skin
vibrations all over body, like it's buzzing
intense itching with no rash
hot flashes and cold sweats
neck and back pain
chest pain (squeezing pressure and hot poker pain) that comes and goes in waves
chest pain that hurts so bad while sleeping at night that I can't move or turn over and feel like I can't breathe
left collar bone neck pain and pain that goes down my left arm
squeezing feeling around the upper part of my left arm (feels like a blood pressure cuff squeezing)
left artery in neck bulges and I can feel my heart beating there without touching it.
shortness of breath
trouble swallowing food, choke on pills and foods
bladder problems (urgency, frequency, incontinence, infections)
constipation mostly with bouts of diarrhea
I don't always have all these symptoms, They come and go at different frequencies and some I get even when I don't have a flown blown flare. All of these things have made life so difficult to enjoy and my family is suffering as much as I am. I don't have the patience anymore for doctors who treat me like I'm a hypochondriac or like I'm looking for their attention. Every time something big happens or new tests are needed, I have to pull hard earned money out of my kids college funds to pay for it. This makes it even harder for me to go to the doctor, but it's also not fair for them not to have their mom wife anymore. These are some of the most important years of their lives and I feel like I'm ruining it for them. I wish I could find a drug or therapy to help me with the fatigue and depression, which bother me the most, or to maybe stop or slow down some of the symptoms I am having before it's too late and they become irreversible.
This journal is also to help me in the future in case I forget too much and can't tell a doctor my story.