I was getting immunotherapy shots, or started. I went to the office and we, the doctor and I together, decided that we due to the high IgE level we'd start off low. I owned an outdoor cat, never pet it, I knew better. I would instantly get swollen red, glassy red eyes, itch, sneeze you name it. But the cat was fun to watch and my kids loved him. He actually adopted us. We live in the middle of no mans land. Oh, and the fact that my ex-husband and daughter fed this kitten milk, yeah that could have done it. But he was really sweet.
Anyway, they gave me one little shot, have as potent as a patient would get starting out and you have to sit for a half-hour to make sure you do have any reactions to it. Poof! One or two minutes went by,could have been three, but it was really fast and I started getting hives on my feet one, two, three then itchy, then it just started escalating into the itchy eyes. Oh boy, here it goes I was just hoping that they weren't going to have to jab me with the Epipen. Within that half hour I had a lot of hives and was just forget it, had to take medicine for it. It was a nightmare. I swear I didn't want to do that ever again. Well, four days later after feeling a little better we decided we would not do shots for cat, maybe never. Lets move on the the next one, dust. Ok, we cuts that in half. Same thing, hives but this time only 4 or 5 on my feet and they were gone within that half hour. Hmmm, ok. Still not good, but better than the last time. I'm thing how is it better, its still hives. I really knew, but I was just like what the heck. So again four days later I go back and the doctor wants to redo the dust but, lets cut that half in half. Ok so now were at like 0.00025 or something miniscule like that. Believe it or not, same thing, hives on my feet. Like 4 or 5 of them then gone within the half hour. Now they make me sit there for 45 minutes, just in case and I'm fine with that. They want me back in 3 days to do this again because the shots are so small. I go back and now they want to cut that. We're now at 0.000025, holy cow is there anything in there? Hooray, no hives. Yippee, but still there 45 minutes, just in case. Now since is so tiny of a dose I am ok'd to go every 3 days for shots, but heres the catch. I can only have one at a time until the doctor decides otherwise because of my reaction. Wow this is going to take forever. Now remember my Ige ( which is what fights allergies and supposed to be 120 or below) is at 3060. I am reacting to just about everything I was tested for even worse because of it. I was a level 4 for cats, but because of my IgE, it makes it that much worse.
I have extremely high allergies for NSAIDS, all the grasses and trees, cats, mold, house dust and about 40 other things. Its not fun being allergic to everything or just about everything. In any case, I started going every three days and things weren't so bad except it took about 9 months of shots just to catch up to where the regular patient would start out at. I couldn't even mix them until I started the regular dose and even then it was hard because there were times that I had gotten hives from mixing and we had to go backwards and reduce the shot dosage.
During this time I was still sick a lot, Upper respiratory infection, bronchitis, and pneumonia a few times and lets not forget the asthma attacks. Ugh, I just couldn't take it. Sick of being sick. Again don't forget this was all the Gastro's idea to begin with because of the stomach issues, but I have to say, the stomach was feeling better, so just maybe this was helping.
In the meantime, I did have some sonograms of my kidneys and other organs. I was told ironically that within a few years I might pass a few stones, but not to worry now. Ok, what did that mean, years? My arteries were good no DVT, deep vein thrombophlebitis, but still the superficial thrombophlebitis and as for the pains they recommended another specialist, a Rheumatologist. The allergist also recommended that I see a Hematologist with the levels being so high and the veins blowing out. Ok, whatever I need to do all I know is that I still feel like crap, I get sick all the time and I can't take it. It really is just getting ridiculous.
Off to the Rheumatologist I go and I tell him how I feel, like I'm wearing concrete shoes and my joints hurt like I have the flu. I get fevers on and off for no reason and usually (I know my body) I have a low temperature, like 96.8 or 97 at most. So when my body temp is at 99+ I'm not good I need Tylenol and don't come near me if its over 100, forget it I have to have something catchy. I tell him there are some days I'm holding something in my left hand and it just falls out. My feet go numb, all these weird things. I sleep during the day and can't sleep at night like my body clock won't adjust. Can he help me. I told him I had been to several doctors before him and please help me. He checks me out and then talks to me. He tells me I have Chronic Fatigue Syndrome and was tested positive for Rheumatoid Arthritis and Lupus but in his opinion the RA and Lupus were more than likely negative. What?!. Really and how in his expert opinion is that? I went to him for an answer and asked about being put out of work because I was in no condition at all to work and he told me I was too young and there was no way he was signing any papers, but he could refer me do another doctor that could help me.
I had to request my medical records and I read them. It stated on them that he diagnosed me with Anxiety. Well of course I have it, I've been to a lot of doctors and no one can seem to tell me what the heck is going on with my body. I mean really, come on now. I want answers not guesses and doctors who have definitive answers who tell me they are incorrect.
I go to this other doctor whom he referred me to and gee to my surprise its another Rheumatologist. Very nice doctor. I read the referral letter, almost like he downed me in the letter. I was a much interesting case. Come to find out I not only have CFS, but carpal tunnel in both hands. I know this and gee he didn't see any anxiety. I have no idea what is with some doctors today, but why half of them are still practicing is beyond me. He gave me some medicine to help but of course it didn't even the several times we changed it. My body just downright aches all the time well summer is best.
I then go to the Hematologist and she does toms of blood-work to try and find causes of my veins popping and such. Nothing. What the heck. My vitamin B low and that was about it and a few other things that we can take care of quickly, but I am borderline diabetic and she tells me that I am overweight. At this time I was 142. It was 2003 and I told her I had been sick and lost some weight and for some reason I just started gaining it back. I really didn't overeat or eat bad. I was 127 about 6 months after gave birth in 1995 to my second child, then gained maybe 10 pounds and recently was sick from that pizza incident and lost just about all of it. So I was maybe 130 in 2002 until the beginning of 2003. I started gaining back then. Well she decided I needed to go on this 1200 calorie diet. I'm only 5 2 1/2. Ok, so I did. Much to my surprise I was only eating about 900-1000 a day already. What the heck. I had to come back once a month and have blood drawn to check for all sorts of stuff and have B-12 shots because it was really low. It the meantime I was having the immunotherapy still and the Rheumatologist and Gastro. Long list of doctors. Now my Hematologist wants me to go see an Endocrinologist. I'm getting dizzy just thinking about all the doctors I have and now start keeping binders of all my doctors, which I still have of, course.
I go see and Endo and the of course they take blood and weigh me. I am now 147. This was only about 2 weeks since I was last weighed. Something is happening. I barely eat and I am still gaining like mad. How much blood does one person have and how do you gain weight without eating? I mean, wow, I give blood all the time. I feel like a human pin cushion. Well my levels are off and he sends me for a sonogram because he feels something on my thyroid. I go a few days later and have a sonogram done. This was painless and easy, phew! I go back and talk to the doctor and I have a small nodule on my thyroid. I am finally getting some answers. I need some thyroid medicine. I have hypothyroidism and this is why I am gaining weight. Hooray another not my fault!. I start the medicine at a low dose, this is how you have to start. Damn, can't you just start according to a chart or something better than trial until it works. Oh gosh I hate waiting. Again with the by the way you are borderline diabetic as per your blood-work. So now they want me to do the 4 hour glucose testing. Ugh! Ok, whatever. What more could it be. Let's just add more stuff. I am a mess now. That comes and goes and I am negative, hooray. But I must make sure my diet is strict. What diet? I barely eat. I told them. I have a bazillion allergies and can't eat just about everything. I gain weight for no reason until we just found out now. So you tell me. What can I eat?
What does a person who is allergic to soy, wheat, beef, lamb, eggs, milk, carrots, garlic, mushrooms, peppers, corn and a handful of other things eat when they are borderline diabetic and get back to me. I mean really I try my best to not be sick first. Then eat the best second. Its not easy. I lived on iced tea, fresh real and salad for a long time.
I took a long time to get my levels even, actually just last year I thing they finally got under control because they all changed again after the surgery.
Its getting long and I will have more later. To be cont'd.
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