So .... I'm sick. I have been battling all kinds of things. I have had CFS since I was 16 years old. I have had Asthma and Allergies since I was 13. I have had Fibromyalgia since - well - probably around the same time I got CFS but only recently got diagnosed with it. I also have had Psoriasis ... since a teenager.
Let me tell my story. My struggles with my health. And why I am sitting where I am. Feeling freaking useless.
 |
| My baby cousin Darlene and I .... |
I finally saw and allergist, and out of the 40 things they tested me for, I was allergic to 38 of them. Yeah, I'm a walking allergic reaction.
And then when I was 15-16 years old, a couple things happened.
1: When I was 15, the end of summer - when I was visiting my Uncle and Aunt and Cousins, We were having a water fight and someone spilled some water on a hard wood floor .... I slipped on it, I slid out my left foot, tried to catch myself with my right foot, and landed my right foot on the top of my toes. I heard a snap. Like a loud, unmistakable SNAP. So I guessed it was broken. I didn't really hurt - per-say .... but later we found out in the ER that I had broken the three middle toes about half way up my foot....
About right there.... the three middle toes, not the big toe, not the little toe... the three middle ones.
6 Weeks - I had crutches, walking boot.... I was miserable.
Shortly after that happened, I traveled to Illinois to spend Christmas with my best friend's family. I had a sore throat but I didn't think anything of it. With in a few days, I realized it was more than just a sore throat and and that I probably had strep. But I said nothing. Hate being a bother. So I kept my mouth shut. By the time I went home, I could barely breath. I couldn't swallow well. Got taken to the ER or the DR and I had severe strep throat. I was down and out for awhile. Infact, through Christmas Break, into January, into February, I was still sick. Seriously sick. I was sleeping all of the time, sore throat never went away .... Mom took me back in, now I was testing positive for Mono... I was so sick. I just couldn't function. I spent most of my day sleeping on the couch at home watching Days of Our Lives .... but mostly just sleeping.
When I finally managed to get back to school, I could only attend for half a day. So I would go in the mornings, and when the energy was sucked out of me, I'd forge a note from my mom, take it to the office, and go home. Call my mom up at work and let her know "you wrote a note to let me out of school today" she'd go "Okay" and remind me to take care of myself, That's how my highschool life went. So it took me longer to finish for my diploma. It was my English teacher who had saw an article in a magazine talking about Chronic Fatigue Syndrome and how she thought it sounded so much like what I was saying my symptoms were. So she made copies of it, which I gave my mom.
This sent me on a course of testing of about 6 months and keeping a medical journal.
It was determined that I did - indeed - have C.F.S.
After I got pregnant with my first child, the symptoms seemed to ease up a little bit. I manged to get my diploma just 2 weeks (about) before he was due to be born.
I did okay .... I had my first MAJOR flare when I was 25, after I had my second child. I was going through a very very awful time in my life. I was a single parent at the time, and I just remember being in bed with the baby a lot and my 6 year old would come and do stuff in my room - we would go upstairs to eat, and all that, but a lot of down time, I was just in so much pain. And then when my oldest son turned 7, my right ankle ballooned up horribly. 2 to 3 times it's size. NO reason. None. Just swelled up. They wanted to drain the fluid or at least get a sample to see what was going on and I just couldn't do it. I have this horrible fear of needles and I remember sitting in the doctors office, crying, holding Noah, his stroller being in there, and I was trying to convince myself to do it, but I couldn't. I had no moral support. I needed someone and I was all alone. The swelling lasted for like 3 months...
That flare lasted for years, but it was tolerable. It wasn't horrible - though it seemed horrible at the time.
I suffer from symptoms, ALWAYS .... and I realized that they have become so normal that I don't even recognize they shouldn't be there anymore. Like, I remember sitting in the DRs and do you have, this that and the other thing - and I said no, and when I left I was like..... WOW, I do too have those symptoms, but they are just not any different than they "normally" are...
2006 was a rough year. Divorced, Married to DB, Pregnant ... I was really sick with my pregnancy with Nathan.
Fast forward some to 2013 ... the summer of 2013, everything came crashing down. I was still active, but not AS active as I had been. Both DB and I were unhappy, not sure either of us really knew it. One of the biggest things was the fact that I was much less active and he didn't like that. (I didn't either but what can your really do when your body is shutting down on you?) In 2014 things were worse. It got to the point where DB and I were possibly going to split up, most of it stemmed from my illness. He had gotten to the point, where I think - he just couldn't understand the downfall and how I had gone from pretty active to barely moving. He felt like I was faking it, to be lazy, which I wasn't.
When I realized this, I sent him links, - THIS explains what I have, THIS explains my disease that I told you about before we even met in person. He read and he clearly understand more. However, I don't think it really REALLY sunk in until he went to a DR appt with me and heard it out of my DRs own mouth. "You have CFS & Fibro!" ... and then I got my horrible horrible SEVERE case of Psoriasis....
So it's gotten better.... but the spots are still there, just muted a lot, not red and angry - and they have started to go away....
Today is 167 of the RED SPOTS.....
The other thing that I have a major loss of hair over the last couple of years. I think it started right around the same time that the flare started this time. At that point of time, I also started to lose a lot of weight. I would love to say I was doing drastic things to shed the weight, but I wasn't. I really wasn't.....
So .... This is a good example of how POOFY and thick my hair was before I started to learn how to "tame my hair" ..... This was Halloween 2004
I still don't like showing my skin because of all the scars and dots I have. But ... yeah ...
The last couple of weeks have been super nasty for me. It's awful. I mean it too. Like, I feel useless, I feel unengaged in my family.... I feel like I have no life right now. I don't want to be like this, but when I get up do do something, the dizzyness is awful, the nausea shoots up my stomach, I walk into walls, sometimes I have to THINK about how my one foot goes infront of the other, my hands and feet are randomly numb - for several days at a time.... my hair is still falling out in clumps, my legs are semi numb - like when they are touched I get that prickly feeling ... and my stomach, especially my right side to my belly button - the WHOLE THING is prickly numb ALL the time. The shooting pains in whatever place it seems to be attacking that day is awful. While Nathan was in the ICU and I was basically sleeping on a board, or in a chair, I was so sick but I just had to stay strong for Nathan. I had to, but I was crying at night when I could because everything felt so bad. I'm at home, in my own bed now, and I'm still not sleeping right. Horrible bouts of Insomnia, I was actually up for over 45 hours just last week. I haven't have a full nights sleep - without waking at least 2 times, since getting home from the hospital. At this point, I think an amazing 8 hours would be amazeballs. Yes that was basically the use of amazing twice in one sentence. Get over it. Anyway ... in the last week, I have walked into many a wall, those buggers just JUMP at me.... and I've lost my balance a lot. Walking is not my friend. I have thought about getting those wheel chair carts at the store, that's how bad things have gotten. I would rather walk and throw up then use one of those, however, I don't want to fall over either. That would suck. 911 called even though I say I am fine. Clearly not fine if I'm falling over.... not okay .... can I just say I'm drunk? Even though I don't drink. Phhth. :: SIGH ::
Dennis wants me to apply for SSI - so I suppose I will. I just ..... don't.... know... how.
Thought it would be a good idea to start up a symptom diary again - just to have somewhere to keep track of it. I had started one several times in notebooks - but this will work better.
Here is a good example of the butterfly rash on my face .... from today ...
My weight this morning before eating and drinking, after using the bathroom - dressed
Temp today ....
Let's see, I had some cereal today, Popsicle, a half of a Subway Sandwich ... and this... Swedish Meatballs :)
PH is closer to a 6, Glucose is over 1000, Ketones are - I think - negative, Leukocytes negative... Protein we'll call neg. And the blood in the urine, well.... that's disturbing.
Went out shopping
SYMPTOMS FOR MAY 31, 2015
·
Balance Issues............ YES: Walked into a wall ....
·
Blurred Vision (D)
·
Brain: Concentration Issues (C,F)
·
Brain: Headache (C)
·
Brain: Memory Issues (C,F)
·
Brain: Migraine (C,F)
·
Brain: Simple Tasks Disorientation “Fibro Fog”
(F)
·
Breathing: Chest Pain when taking deep breath
(L)
·
Breathing: Shortness of Breath (C)
·
Butterfly Rash (L)
·
Chest Pain (C)
·
Chronic Cough (C)
·
Constipation
·
Crimson Tide
·
Crimson Tide Cramps
·
Cuts & Bruises don’t heal (D)
·
Day Sweats for no reason (C)
·
Diarrhea (C)
·
Difficulty Walking
·
Dizziness (C)
·
Dry Eyes (C)
·
Dry Mouth “Cotton Mouth” (C)
·
Ear Ringing
·
Earaches (C)
·
Feeling: Anxious (C,F)
·
Feeling: Depressed (C,F)
·
Feeling: Moody, Irritable (C,D)
·
Feeling: Panic Attack (C)
·
Feet: Blue
·
Feet: Cold
·
Frequent Urination (D,F)
·
GI Bloating (F)
·
GI Pain/Cramping (F)
·
Hair Loss (L)
·
Hands: Blue (L)
·
Hands: Cold
·
Heart Palpitations (C)
·
Hunger Increased (D)
·
Intolerance to Exercise (C,F)
·
Itchy Skin (D,P)
·
Jaw/Face Tenderness (F)
·
Joint Pain (C,L)
·
Joint Stiffness (C,L)
·
Joint Swelling (L)
·
Lymph Nodes Enlarged (C)
·
Mouth or Nose Ulcers (L)
·
Muscle Pain (C,F,L)
·
Muscle Pain after Exercise (F)
·
Muscle Spasms (C.F)
·
Muscle Tightness (C,F)
·
Nausea (C,F)
·
Night Sweats (C)
·
Numbness In Body (D,F) –name place-
·
Pain that moves around the body (C)
·
Red Rash (L)
·
Sensitivity Light (F,L)
·
Sensitivity Noise (F)
·
Sensitivity Odor (F)
·
Sensitivity to the Sun (L)
·
Skin Infections (D)
·
Skin Sensations (C)
·
Sleep: Can’t wake up-Coma (C,F,L)
·
Sleep: Cant’s Stay Awake (C,F,L)
·
Sleep: Exhausted (C,F,L)
·
Sleep: Insomnia (F)
·
Sleep: Unrefreshed/Tired (C,F,L)
·
Sore Throat (C,F)
·
Stiffness upon Walking or moving after sitting a
bit (C,F)
·
Swelling around Eyes (L)
·
Swelling feeling in feet (with no swelling) (F)
·
Swelling feeling in Hands (with no swelling) (F)............ YES: I don't think my hands are actually swollen but they feel like it
·
Swelling in Feet (L)
·
Swelling in Hands (L)
·
Swelling in Legs (L)
·
Temp: Cold
·
Temp: Cold & Clammy
·
Temp: Feel feverish but not
·
Temp: Fever – 100-102 (L)
·
Temp: Fever – Low Grade (under 100) (L)
·
Temp: Fever – over 102 (L)
·
Temp: Good
·
Temp: Hot
·
Thirsty unusually (D)
·
Tingling Skin (C)
·
Vision Disturbances
·
Vomiting (F)
·
Weight Gain (D)......... NO
·
Weight Loss (C,D)
