Saw the doctor today and I knew in my heart it didn't but he confirmed today that the nerve block for my back didn't work. I was hoping for a miracle but I didn't get it. But the good news is that my hands are doing better, I can use them again, so for me that is a positive thing! They are still really swollen but hey look I am typing with all fingers tonight so that is a good thing! I think last week I was just really down because I couldn't take my meds because of a really nasty bug - coldish and another nasty bug you sometimes pick up when traveling that I picked up and it came home with me. And it is extremely embarrassing. And OMG, what a pain in th "A" it was to have to get those meds, go thru that process, then have to have an exterminater here, throw away my luggage and briefcase, comforters and such to the cleaners etc. What a pain. I actually told my husband that we should just move! Here is a huge tip for people who travel anywhere, anytime - NEVER under and circumstances put your suitcase on a hotel bed and yes I know better but I did! My poor feet and my luggage brought home bedbugs. Now mind you, I only stay in "nice" hotels, I was in a brand new Hilton last Thursday when I got them. It can happen to anyone, at anytime. I have to say that I have been lucky in 15 years of traveling that this is the first time I have picked those nasty little things. So to all of you who are planning trips, be careful! Oh, and yes, I pull the sheets, bedcovers up and look for the signs and I didn't see any - what they told me is that in the beginning stages there is no sign of them, only when it is infested can you see a trail. ICK! Oh and you guys will love this, they told me to only keep my luggage in the bathtub because you can see the bugs is the tub. Well, hello, I don't know about you guys but I take at least one if not two showers a day, hmmm so how am I going to keep my clothes in the tub and take a shower at the same time???
Off on a side note to those of you who have asked, my grandbabies are doing great. 5 weeks old yesterday. Still in the NICU but the stepdown one as of this past Saturday. We are on the countdown to coming home. 3rd day of the 8 day countdown - go babies! So far so good! Going to put a plug in for the best ever hospital - UNC Chapel Hill and the most fantastic NICU ever! And trust me, this is so hard for an ECU girl to have to do this! The women and men nurses and doctors (do you guys notice who I put first) here have to be the best in the country! These people are so dedicated and sincerely love their jobs and the patients, it is amazing. I know that alot of you on this site are nurses and my hat is off to you! Thank you for everything you do for your patients and for their families. And thank you for the little things you do - making cards, signs, combing our babies hair into mohawks, etc, the love you feel for your patients is beyone belief. I cannot thank all nurses enough! They have made such a hard time for us so much better! Without the nurses, I don't know how we would have made it thru this. From the bottom of my heart, I will always love a nurse!
Thanks Frances, you know how you hope something will work and then it doesn't. Over feeling sorry for myself and on to the next thing. Hoping whatever it is, it will work. I just need to be able to walk and stand to do my job and it is getting harder to do that. And, not willing to give up and go there yet. I love my job and want to be able to continue as long as possible.
Mat, I do understand. When I was prescribed Humira, I was led to believe by my doc, that it would fix my PsA. 3 months later no change and just started on Remicade and very concerned it won't help either. What do you do for work that you have to stand?
Frances, I am a software trainer for my company. I have to stand/sit to train my accounts. Not sure how you want to look at it, but I am one of those people who cannot sit still, I have to move to talk and train. Give me a mike and put me in front of people and I am good to go. Now, I have a problem doing so. I need somewhere to rest.I can still do it. but sometimes people realize I am in trouble and it is so troubling that I have to take a break to move. Now mind you my classes and my bosses are great in letting me do so, but really, how long are they going to let this go on? I am great at what I do (OK, swelled head here, but when you are good you know it) but OK in reality, how long can it last? I hope you realize some of this is in jest, but this is my work, what I am committed to, what can I do, suggesions?
Been on meth for 9 months and Humira for 6 months. I can feel somewhat better, but not what was promissed. Should I keep on this path or try to move onto another one? BTW I hate this disease more than you will ever kno
I can't give you advice on whether you should move onto something else - I will be struggling with the same question, if the Remicade doesn't help much. So, do you have to stand, or you want to because that helps you teach? Getting up and down is moving, and will give you a break ? Can you lean against a table from time to time? Have a couple very small tables and chairs in the room so you can move from one to the other? Would that help? I've only taught a few classes when I didn't have PsA, so I can kinda relate to the need to walk around, use flip charts etc.
MAT, sorry about the bugs, and bummer about the block. But the biggest positive of all is those adorable babies. They are lucky to have such a spirited grandma, even if she is doing battle with the disease we all hate more than anyone can know.
Thanks for the update!
I'm think mat, you might want to call methotrexate, MTX rather than meth (although meth seems like a good idea from time to time) You may slip and tell someone you are on "meth" and have them misunderstand :-)
You CAN adjust teaching to your disease. Its hard but it can be done. Software training is tough, but you can adapt. Perhaps more screen shots into an animated .ppt ??
Oh, oops I didn't realize I called it meth, I either had a blonde or old moment there, not sure which, in my case it could be either! I will be more careful though, while it may seem like an interesting solution to this disease I really don't think meth is going to be something I will add to my drug collection.
I am trying to adjust, I am just a person who cannot sit still and right now standing and walking is really hard for me, that's why I was so hoping the nerve block would work. I train on a live system which is unique to each account. I believe in the positive so I'll find or someone will help me find something that will make it work!
tntlamb said:
I'm think mat, you might want to call methotrexate, MTX rather than meth (although meth seems like a good idea from time to time) You may slip and tell someone you are on "meth" and have them misunderstand :-)
You CAN adjust teaching to your disease. Its hard but it can be done. Software training is tough, but you can adapt. Perhaps more screen shots into an animated .ppt ??
I can not imagine bed bugs either nor keeping my luggage in the shower. Eeewww ! The school my son goes to has smart boards. The hospital I work at does as well. Once you get the hang of them they really do allow you to sit a fair bit but still provide an exciting, active learning environment. I think NICU babies with Mohawks is awesome! Here’s to them coming home soon. Hang in there. Apparently bed bugs can be killed by the cold. Where I live I have lots of that. If there is something you can not wash, could you freeze it? Then it might be salvageable. Just a thought. Hang in there, this too shall pass. ( I need to get that tattooed to me:) )