shmirly

Health Interests

osteomyelitis- bone infections in my feet and hip(s),  common variable immune deficiency disease (PIDD) like the bubble boy,  several bone infarctions (blood clots in different bones through out my body) back,  hips etc. i get migraines but that is from my infusions i have to get every 20 days through a port a cath that is in my chest.

Drugs I am Taking

IVIG gamunex,  methadone,  percocet,  ultram,  zanaflex,  lovenox injection(s),  i have a port a cath in my chest

About Me

i have primary immune disease (PIDD) or "bubble boy" disease. i also have a blood clotting disease that forces me to take 2 injections a day. i have had 2 2 blood clots in mys, 1 in my inferior vena cava, and several through out my body which cause what they call bone infarctions. basically the blood supply dies in that area and remains "dead" and painful like a broken bone.

I keep losing all of this info. on the page, so it may look confusing.

anyway, i am in the process of applying for disability (a huge task) and when i got my records from the hospital i had 17 in patient stays, 31 er visits and about 24 out patient suregeries and procedures - since 2000. my pain is consider to be similar to bone pain that cancer patients have.

oh yea, the worst part - both of my daughters (age 10 and 11) have the same immune disease and receive the same type of "chemo" treatments.  Unfortunately, i wasn't diagnosed until my youngest daughter was at age 4! She "died" two times before and spent 4 1/2 months in the hopsital - make a long story short she has had over 8 surgeries herself, and my other daughter (they are 18 months apart) has had about 5. Needless to say, they both have been hospitalized numerous times with severe illnesses - we can't fight infection! All the damage has been done because growing up they had no idea what was wrong with me, so every minor problem turned into a major one. i have had so many infections that i have lost my appendix (ruptured) gall bladder(pancreatitis) etc...The one(s) that give me the most pain at this point is the fact thay i had surgery on my feet for infected bone spurs - they didn't treat me with antibiotics that were strong enough and my body wouldn't absorb them, so i ended up with ostemyelitis (bone infections). it is a type of pain similar to "cnacer" pain - i see a Cancer pain mangement doctor and a oncologist. the infection did spread up legs - i have had 4 picc lines, 4 port a caths, 2 jugular iv's and 2 subclavian iv's to administer the strongest antibiotics possible. The other problem, i also have a blood clotting disorder that causes my body to form blood clots. i have 2 in my lungs and 1 in my inferior vena cava. i have had several in different parts of my body (legs, hip), which makes the bone "die" and they cause something they call "infarctions". all this mumbo jumbo just means i am in constant pain and have been on and off medication for about 8 years. My daughters shouldn't have all of the complications i do, because we are treating them aggressively - but i can't help but worry. i have a degree in Child and Adol. Psych. and was finishing up my BSN (nursing) when i was diagnosed and my dr convinced me that working in the hospital with so many germs wasn't the best idea. so, isettled for the school nursing position at my kids school for a few years. then my daughters would keep getting sick forcing me to quit because i felt so guilty not being in both places. Now i am a compounding pharmacy technician (i make all of the wonderful drugs that we all have to take)Sounds like fun! The problem is that i am on my feet the whole day and i finally applying dissability - my body just can't take anymore! i hate that "i am giving in" to it, but after many prayers, god is telling me to do it (so is my husband and prayer group and my children) I have a wonderful support system, my husband is so incredible - i was truly blessed when i found him. he deals with all of the illness around him and helps all of us get through our treatments and keeps us laughing! i don't what i would do without him.

so...i can't possibly tell you about all of my medical issues, but when i requested my records from my hospital i had 18 in-patient stays since 2000, and 24 er visits, and 12 out patient surgerines or procedures done. I currently have a port a cath in my right jugular/chest area - due to my veins completely giving out.  with all of this going on in my life with my children's disease as well, the pain definitely doesn't help because i can't be at "my best" to comfort them during their infusions which are once a week. i still remain positive and know that things could always be worse and there is someone out there who is. God only gives us what we can handle, and since i have such a great support team, he is making us stronger! i hope to find some people here that can relate in some way??? i'm sure they are outh there - they don't have to have my illness - just know that it is done pain (which my dr refers to as cancer pain) and having it in both feet is a bummer.

I think this is more than enough information - i find it very hard to explain my histroy in a short way. i wish social security dissability "good luck" trying to get this into their computer! they denied my a few years ago. Now that i am going in for the pump (march 10), i would hope that helps prove my case. i hate taking medications, i'm sure you all know how that is, not to mention people that don't really know you think you're are addicted and how can you be so sick and still look good (not bragging ) i look pretty healthy is what i mean. i have always managed to keep it under control and function but my body has caught up with me now - i just turned 40 two days ago - i can't believe i am making these decisions on my 40th birthday and not my 65th!

So, to all of you - thank you for reading, and responding (i hope) to me. i will be a great pen pal and i promise not to over analyze anyone with my psych degree (ha ha). i just have a great deal of knowledge from going through all of this with myself and my kids. i do have some questions about the pump so if someone reads this and feels moved to respond, i gladly will.  i am by far a true christian which is the only way i can get through this - i knwo i am still blessed in many, many other ways.