I Need Patience
Spent the day today taking a relative to a "Parkinson's Clinic". This is some clinic administrator's idea of how to market adjunct services to an already ill clientele. If you weren't ill before you got there, you would be ill and exhausted after you escaped. Got there at 8:00 in the morning and finally left at about 3:00 in the afternoon. According to my relative a lot of time back in the warren of offices there was spent waiting on the doctor to appear. They get you captive back in one of the little exam rooms and it becomes almost impossible to leave, and at a certain point you have so much time and effort invested in "sticking" it out to see the doctor you hate to just walk. The supposed advantage was getting to see a social worker and a physical therapist at the same time as seeing the doctor, except there weren't any physical therapists there. Augggghh!!!
My blood tests have come saying I am not taking enough thyroid hormone (synthroid). Since I have autoimmune thyroid disease and autoimmune hives, my hives are believed to be linked with thyroid dysfunction. More circulating thyroid stimulating hormone (TSH) can mean more autoimmune activity, which in turns causes more hives....which may be why my hives have doubled since discontinuing the prednisone. My TSH should be in a range of .5 to 3, and it was an 11 - meaning my pituitary glad is working overtime trying to jump start my thyroid. I am to give try a week on the new dosage and if the hives don't get better, I'm to go back to the immunologist. Sigh. I have been on a stable dose for the last two years, I guess my body has decided to go into attack mode again. Why can't it attack something other than me??
I am itchy and grumpy and all of the seven dwarfs combined tonight. Sitting in a waiting room was hard on The Legs today and The Belly hasn't been a happy camper for over a week. I have hives bumped up all over me, my face is redder than normal, and I have the attention span of a gnat. I actually feel sick enough I don't even want to think about work, and work is my only escape from feeling sick!! Sigh again.
I am sooooo tired my thoughts are "echoing" in my head, ricocheting around my skull like a superball in a handball court. I have tiny little red hives all over my forehead, in my hair, on my back, and on my legs. I have even bigger hives on my stomach and my arms. The Headache is not happy with me (too much walking I fear) so I am going to take many antihistimines and try to go to sleep. Maybe I can sleep for years just like Sleeping Beauty. You really have to be sleep deprived to wish that a witch with a poison apple would drop by for a visit!
When I hit the big four oh, I found that my body started to fall apart one piece at a time. My warranty had expired and there was No Extended Warranty available! This is the story of my struggle to keep it all together using spare parts and baling twine.
Showing posts with label autoimmune urticaria. Show all posts
Showing posts with label autoimmune urticaria. Show all posts
Tuesday, September 21, 2010
Wednesday, September 1, 2010
It Itches To Be Me
Urticarial Wheals Are Being Served
Woke up this morning feeling a little out of energy. I went to bed last night earlier than usual and was awake and stirring earlier than usual. There was quite the rainstorm going through the area, so I waited a little to start my commute to work. I thought maybe the lack of energy was due to the storm. The weather moving through the area had caused The Headache to poke and stab several times in the night. I had my daily 2 am jab to the temple to complement the other stabbing pains, but they all only lasted a few minutes so overall it was not too bad. Stopping the Klonopin brought The Headache back into the almost manageable range again, so I was correct in thinking it was the medication.
Went to work, had to have my heater on in my office because I was way too cold. Ate a fast food lunch which is an uncommon occurance since The Belly and I agree not to eat at work. Eating makes the continence issues or lack thereof more of a problem, so I try to limit food and drink during working hours. Didn't feel too well for most of the day, had taken zofran for nausea before lunch, and then was not feeling too hot after lunch - which I attributed to the amount of fat in my food : there was much more than the 5-6 grams of dietary fat I try to keep to with each meal, but it might have been the hives starting to act up.
I always have some hives somewhere on my body, have since 2007. They almost disappear some days but in the evening they are always worse. I've been diagnosed with autoimmune chronic urticaria so I'm allergic to myself more than anything else. Driving home I looked in the rear view mirror and noticed my forehead and face were getting bright red, and my ears and the inside of my nose were feeling mighty itchy. This is not a good sign for me. It means the hives are getting ready to pop out, the mast cells are gathering to degranulate, and I am going to have a miserable night trying to resist itching.
By the time I got home, I had gone from bright red all over to bright red hives. Some are raised, and some are just red blotches of mast cells just under the surface of the skin. I took a vistaryl tablet and waited to see if it would help. Nada. Nothing doing. Hives still popping, and now I can feel them behind my ears. Not good news either, because hives behind my ears and soon I have sticking out ears like Mr. Rumbold on "Are You Being Served?"
I have now taken 25 mg hydroxyzine (Atarax/vistaril), 50 mg diphenhydramine (benedryl), 25 mg promethazine (phenergan), and 5 mg montelukast [Singulair] but I'm still broken out and still getting new hives. They are not as large or as tightly grouped as they were so maybe this combo will slow things down. I have epipens but really don't want to use them unless it is totally necessary. The interior of my nose is a little swollen but I don't feel my vocal cords swelling so hoping I knocked the hives back enough that I won't need to use epinephrine. I feel like I'm starting to get hives on the bottoms of my feet which is not great either. I have ranitidine (zantac) which is an H2 blocker I can also take. Most of what I have taken have so far been H1 histamine blockers with the exception of Singulair which is a leukotriene inhibitor. Generally the H2 blockers don't help me too much.
Wondering if the fast food restaurant cross contaminated my food with fish or seafood products. I have to be extremely careful when eating out but most fast food places have good processes where either they warn you that cross contamination is possible or they just don't cross contaminate seafood/fish with other foods. The inital help from the medication is already wearing off, and it's only been about an hour since I took it. Gonna be a long itchy night at my house tonight! Trying very hard not to be whiney but I itch so badly. Waaaaah!
Tuesday, August 11, 2009
I Am Allergic To... [Drumroll Please!]

Myself!!!!
Got back from Kansas City. A pretty good day as The Headache waited until I was almost home to move on up the pain scale. Much better than my last trip to the big city where it was to the point I couldn't make sense by 9:00 AM.
The occipital stimulator must be helping The Headache (surely) as my blood pressure was at a level I haven't seen in a couple of years - my normal 110/70. The stimulator seems to make me a very sleepy driver so I have been turning it off while I drive. Not sure if I am just imaging this or not, but I am dangerously sleepy with that thing on. Wish it would do that at night! Maybe this is just chance, because I have had some bad nights right around my last three solo driving adventures and I may have been abnormally tired??
The big news of the day, I don't need to worry about the dog, cat or horse allergies - they barely register when compared to my allergy to MYSELF. That's a hard allergen to avoid. They looked at my giraffe spots where past hives had left their mark, and of all things poked on my freckles on my back, which made a hive pop up on my wrist about 5 minutes later, and then started my lips swelling when I was almost home. They haven't ruled out mastocytosis, which my last immunologist thought (but then didn't think so but then did wonder if) I had that or a related disorder, but say I definitely most definitely have autoimmune hives.
I have been put back on Plaquenil which I felt gave me a small improvement last year to address the autoimmune aspect. I have been taken off the Xyzal (which I felt didn't do a thing) but will keep on taking the Singulair. They gave me a script for a lower dose of doxepin, and said the results from it won't be immediate - it make take months...sigh. But the doctors cheerfully told me I should be happier overall because it is an anti-depressant!!! I guess that they are assuming I am depressed. I don't think so but perhaps I am in denial - you know...that river in Egypt... I go back in November.
In addition to returning, they want my primary care doctor to run regular blood tests for them, and for me to get a biopsy done of a hive attack if I get a "really big bunch of them". Not sure if they mean "big" as in size, or "big" as in many or both. I guess I will just have to let myself break out and get it biopsied at the emergency room while I get treatment for them - NOT. I don't think that one is going to happen. I also have to have a "plaquenil" eye exam done sometime in the next couple of months whatever that may be...
Had a pleasant ride around Kansas City, and drove through some neighborhoods I haven't seen in about 25 years. One old downtown warehouse where they wholesaled prizes for circuses and carnivals is now a yuppified condo complex. Kinda miss the old scrubby warehouse, which is now occupied by classy urban folk sipping lattes in the coffee shop at street level. A doctor's plaza where my niece went to a pediatric opthamologist many moons ago (he was able to prescribe her with glasses before she was one year old!) is completely gone, and the small community type hospital near by is now a mega hospital that towers over the surrounding buildings. I guess I should go back more often, eh?
Off to buy coffee - we are out, and apparently everyone forgot it until it was time to make a pot!
Saturday, August 8, 2009
Vitamin D Deficient

Allergy Testing Results
Got a big packet in the mail yesterday. It was from the allergy/immunologists I saw last month, and included my test results and a prescription for Vitamin D. Apparently I am moderately deficient in vitamin D, the sunshine vitamin. It is a food born vitamin that is absorbed by the gut and potentiated by sunlight, and since pelvic radiation treatment has left me with some permanent absorbtion problems I shouldn't be surprised but I was. I am a great milk drinker, have it every morning, but it must not be enough. I'm to also increase my calcium supplementation. More pills....sigh. According to a medscape article there might be a link between Vitamin D deficiency and migraine, but its hard to tell because they are both very common...
From my tests it seems I am allergic to DOGS and CATS and HORSES and not any pollens or dust mites. I don't have any horses, although I have lots of Amish drive by's that may have kicked that off, but I love my dogs and cats. I have had dogs and cats my entire life. I don't have any sinus allergy symptoms at all. Not sure what to do about it but rip up the carpets and put down hardwood floors. Can't get rid of my little people pets. Going to take my pup Augie to the Vet this morning for his toenail trimming and see if the Vet has any ideas. I run Hepa filters and ozone generators in the house because my mother has allergies, so not sure what else but vacuum vacuum vacuum will do any good.
I also seemed to test positive for Autoimmune Urticaria, which is hives caused by autoimmune problems. I show some antithyroid antibodies, anti IGE and anti IgE receptor FcεR1 antibodies. I figured I would have the antithyroid problem as my thyroid quit functioning properly in my late twenties. According to the International Chronic Urticaria Society website this may be why all the antihistimines I take don't fix the problem. I go back to the specialists next week to see what the next step will be. I am not a candidate for immunosuppresant therapy because of my cancer history. Maybe I will just be itchy and bumpy for the rest of my days.
The Headache is halfway behaving itself the last two days. It acted up yesterday afternoon and evening, but calmed itself back down when I increased the settings on the occipital stimulator. Could it be helping? Hard to tell.
Got a big packet in the mail yesterday. It was from the allergy/immunologists I saw last month, and included my test results and a prescription for Vitamin D. Apparently I am moderately deficient in vitamin D, the sunshine vitamin. It is a food born vitamin that is absorbed by the gut and potentiated by sunlight, and since pelvic radiation treatment has left me with some permanent absorbtion problems I shouldn't be surprised but I was. I am a great milk drinker, have it every morning, but it must not be enough. I'm to also increase my calcium supplementation. More pills....sigh. According to a medscape article there might be a link between Vitamin D deficiency and migraine, but its hard to tell because they are both very common...
From my tests it seems I am allergic to DOGS and CATS and HORSES and not any pollens or dust mites. I don't have any horses, although I have lots of Amish drive by's that may have kicked that off, but I love my dogs and cats. I have had dogs and cats my entire life. I don't have any sinus allergy symptoms at all. Not sure what to do about it but rip up the carpets and put down hardwood floors. Can't get rid of my little people pets. Going to take my pup Augie to the Vet this morning for his toenail trimming and see if the Vet has any ideas. I run Hepa filters and ozone generators in the house because my mother has allergies, so not sure what else but vacuum vacuum vacuum will do any good.
I also seemed to test positive for Autoimmune Urticaria, which is hives caused by autoimmune problems. I show some antithyroid antibodies, anti IGE and anti IgE receptor FcεR1 antibodies. I figured I would have the antithyroid problem as my thyroid quit functioning properly in my late twenties. According to the International Chronic Urticaria Society website this may be why all the antihistimines I take don't fix the problem. I go back to the specialists next week to see what the next step will be. I am not a candidate for immunosuppresant therapy because of my cancer history. Maybe I will just be itchy and bumpy for the rest of my days.
The Headache is halfway behaving itself the last two days. It acted up yesterday afternoon and evening, but calmed itself back down when I increased the settings on the occipital stimulator. Could it be helping? Hard to tell.
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