Don't know what to do..

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LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 7/2/2013 1:12 AM (GMT -6)   
Hi everyone,
I'm having a really rough time right now  cry   I've been on short term disability for 3 weeks now and off of CellCept this entire time. My rheumy discontinued it b/c of my confusion and black out spell. I feel like complete crap, taking pain meds out the wazoo, and have been counting down the days until I get to see my rheumy so we can start a new med and I can get back to work and back to my normal life. So on Wednesday my doctor's office called and said my doctor had a family emergency so all of her appointments for the week would be cancelled. I called today to check in and they said she will be gone for at least a month and they will call to reschedule once she returns but there is no one covering for her. Now what am I supposed to do? They said they will call her and see if she wants me to start a new med (subq injections of mtx, Cytoxan, rituxan, or other is what we discussed before) or what she wants me to do. I feel very nervous about starting a new med with no contact with her but I am miserable and am supposed to return to work on the 15th. Also, I have papers for work I need signed with no one to sign them. So I guess what I've come to is that if she prescribes a med, I'll visit my PCP, let him know what's going on in case I have problems, have him fill out my papers and go from there. If she doesn't prescribe anything, I guess I'm going to have to find a new rheumy. I absolutely love my rheumy so I'm super upset and the last rheumy I visited for a second opinion was TERRIBLE! I feel like I have this black cloud over me at all times.. someone please help!! And if any of you are from Southern IL or the St. Louis area and have a wonderful rheumy to recommend that would be great! I'm trying to think positive thoughts with all the stuff that's been going on but I'm honestly starting to get very depressed and worried I need some help in that department too..
Nicole- 25, married, no children, Registered Nurse
Endometriosis, Lupus, Raynaud's, Degenerative Disc Disease, Migraines
Meds- Lo Loestrin Fe daily, Plaquenil daily, Prednisone daily, Prilosec daily, Celebrex BID, Tramadol prn, Dilaudid prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble.~

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 7/2/2013 7:13 AM (GMT -6)   
Hi Nicole. As a RN you often get verbal orders from physicians that you carry out on a daily basis. I know how much you want to see your rheumy for reassurance, but please try to take some reassurance form some of us who have been doing the lupie thing for years. If you can get a verbal change in meds, take it. If the office drags their feet because the boss is away, pay them a visit and wait in their lobby for a few hours making a complete pest of yourself (yes, I've done this). Ask them to call your doc (she has a cell phone) requesting her thoughts on medication changes and ask them to fax the paperwork you need signed, all the while waiting until you have them in your hot hands. If the staffs state she doesn't have a fax, ask that when they call to ask your rheumy specifically if she can get access to a fax. Also ask if she can recommend another rheumy who can follow your progress until her return.
 
Bring the staffs donuts! Be friendly and courteous while you wait.
 
You may want to see a psychiatrist regarding your anxiety and depression. I've been seeing one for years and he has helped me as much, if not more than any other doc. He also has other lupus patients. His job is to make the black cloud lift and to ease your anxiety.
 
Lastly, your PCP should be your doc who pulls all the info from your other docs and is up to date on your latest issues. Pay him/her a visit. You might be surprised at how much help you receive. Hold on Sweetie. We are here for you. Love, Butterflake

LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 7/2/2013 10:25 PM (GMT -6)   
Hey Butterflake!
Thanks for the encouraging words and reassurance. My rheumy's office called today and said my doc called in a script for the subq MTX injections so I made a trip up to the pharmacy and picked it up. While I was there, I was able to get into my PCP to give him an update on everything that's happening and just in case I have any issues. He got all my paperwork signed and faxed for me. He is now up to date and aware of the situation. I also talked to him about feeling down an awful lot lately. He said he'd rather try to stay away from antidepressants (as would I) because many have a serotonin syndrome risk with the other meds I'm on (and I've already had that happen before so I'm already at higher risk and I DO NOT want to experience that again). So I will check into a psychiatrist and get on that. I also did my first MTX injection tonight and I'm thinking positive thoughts :) I'll try to keep up on letting you guys know how I'm doing and any side effects I'm having (hopefully I won't have any!). Wishing you all low pain days and sleep smilewinkgrin Good night!
Nicole- 25, married, no children
Endometriosis, Lupus, Raynaud's, Degenerative Disc Disease, Migraines
Meds- Lo Loestrin Fe daily, Plaquenil daily, Prednisone daily, Prilosec daily, Celebrex BID, Tylenol prn,Tramadol prn, Dilaudid prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble.~

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/2/2013 10:49 PM (GMT -6)   
I have a question about what size needle do they use for the MTX injection? Short or long? Is it in your leg, arm, or stomach?

I have a needle phobia and I'm just like to be aware of possible shots. I still close my eyes for blood draws and I've had them 4-6 times a year. Ugh! {{{{{{Shiver}}}}}}}
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 7/2/2013 11:08 PM (GMT -6)   
Joy,
I totally understand. I don't enjoy being on this side of the needle either but at this point I'll do anything to feel better! They sent me with insulin syringes (which are tiny little needles) and you can do it in your belly, thigh, or back of the arm. I did it in my stomach and the actual shot didn't hurt at all but a few minutes later the site did burn a little. You can barely see where I stuck myself. Hope this helps!! And don't be scared ;)
Nicole- 25, married, no children
Endometriosis, Lupus, Raynaud's, Degenerative Disc Disease, Migraines
Meds- Multivitamin daily, Lo Loestrin Fe daily, Plaquenil daily, Prednisone daily, Prilosec daily, Celebrex BID, Folic acid daily, MTX injections weekly, Tylenol prn,Tramadol prn, Dilaudid prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble.~

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/3/2013 12:02 AM (GMT -6)   
My mother does insulin shots. So I know what size it is then. Not too bad if I need them but maybe I'll get someone else to give it to me. I'd probably wind up closing my eyes. LOL!
I wonder if it comes in pre-fill syringes?
My father was taught how to give my mother her B12 shot in her arm. Big Needle!
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 7/3/2013 4:04 PM (GMT -6)   
Joy,
I know they are available in prefilled syringes. I wasn't offered that however. My husband offered to give me mine.. even though he's terrified of needles, blood, etc. He just wanted to stab me lol :)
Nicole- 25, married, no children
Endometriosis, Lupus, Raynaud's, Degenerative Disc Disease, Migraines
Meds- Multivitamin daily, Lo Loestrin Fe daily, Plaquenil daily, Prednisone daily, Prilosec daily, Celebrex BID, Folic acid daily, MTX injections weekly, Tylenol prn,Tramadol prn, Dilaudid prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble.~

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1038
   Posted 7/3/2013 4:37 PM (GMT -6)   
I used to faint when they drew blood. Now I get it done at least three times a month. I also have terrible veins. On top of that I have to give myself Humira every week.
30 female. Sherrie, 2007 UC, 5/13UCTD, Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Plaquenil, Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, Lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31

LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 7/3/2013 11:59 PM (GMT -6)   
Its sad that we "get used to" having our blood drawn or have injections because we have to have it done so much! Here's to good veins and one stick :p
Nicole- 25, married, no children
Endometriosis, Lupus, Raynaud's, Degenerative Disc Disease, Migraines
Meds- Multivitamin daily, Lo Loestrin Fe daily, Plaquenil daily, Prednisone daily, Prilosec daily, Celebrex BID, Folic acid daily, MTX injections weekly, Tylenol prn,Tramadol prn, Dilaudid prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble.~

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1038
   Posted 7/4/2013 1:53 PM (GMT -6)   
It is funny. I have specific veins that the phelbotomist (SP) at different doctors use. At my gastro they like the one in the bend of my wrist. At my family doctor they like the one deep in the bed of my elbow. My gyno refuses to use the one in the bend of my wrist no matter how many times they have to stick "because that one hurts too much". Personally I think being stuck more times is what hurts too much. lol
30 female. Sherrie, 2007 UC, 5/13UCTD, Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Plaquenil, Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, Cymbalta, Lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31

LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 7/5/2013 12:06 AM (GMT -6)   
Lol! I pull the I'm a nurse and know where my good veins are. Don't even try to stick me in the bend of the elbow in my left arm, don't stick my wrist, there's good ones here and here :)
Nicole- 25, married, no children
Endometriosis, Lupus, Raynaud's, Degenerative Disc Disease, Migraines
Meds- Multivitamin daily, Lo Loestrin Fe daily, Plaquenil daily, Prednisone daily, Prilosec daily, Celebrex BID, Folic acid daily, MTX injections weekly, Tylenol prn,Tramadol prn, Dilaudid prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble.~
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