I've been missing from here way too long. I have so much catching up to do, but I look forward to it. I missed you all! I went through some things that kept me off line a lot.
I went off three of my big main meds and that was a three week nasty scary mess. I couldn't think straight for more than ten seconds, lost sensation in the bladder, and couldn't tell if I was hungry or sleepy. Had an overall nightmare time with withdrawal. No more Cymbalta, Opana ir or ER though. I got rid of the drugs because they were not helping, making me feel worse, and I fired the primary that kept pushing them on me. I'm doing much better "brain wise" now. It feels so good to be more like myself again. I promise you I'm much more cheerful than the person you all have met. Lol. The drugs impaired me so badly. It's good to have my half a brain back.
But...my newest specialist's office called me a while back and told me they found elevated anticardiolipin antibodies (sticky platelets) and they want me to have an MRI of my brain to check to see if there are any clots causing my headaches and eye pain. Just when I thought I couldn't be floored again by news from a doctor...
I'm pretty scared about this one and could use some prayers for courage. I have the mri on Tuesday. I'm also getting an ultrasound done of my gall bladder because I've had symptoms that make us wonder if there's something wrong there. I'm doing okay but I need to keep a stiff upper lip you know? Sometimes it's hard. You all know what that's like and what I mean. I sure do appreciate you all. My hubby has been through some awful hellish things lately. His main worry is me bless his heart. I've seen the man scared so many times the past year over me that it's awful. And this last bit of news made him go white in the face. His dad had sticky platelets with a different disease that killed him last year. So, when he heard this new news my doc found, he automatically thought of his dad and it scared him so bad. The fear on his face is the worse I've seen yet and it just breaks my heart to see him like that. He has already been through so much. he's still jumpy but trying to put on a strong face for me. He forgets we've been married for 21 years and he can't hide much. I don't want him to be scared of this based on his father's death. It doesn't mean the same thing as what his dad had, the poor man. So please pray for my hubby too. My kids are going by how I react to things so they're good.
I'm getting so tired of fear! Some peace that would last longer than a few days in a row would be really nice!
Oh you have been missed.And what a scary time for you.You've been having it tough.But always remember at some point things will calm down for you.I will make sure you are in my thoughts and your husband too.Goodluck with the mri and scan and i hope they come back with good news and not more stress.I will be thinking of you both.
lots of love
I wanted to say Hello :wavey: and welcome you back.
You are in my prayers...in fact, I've been praying for you today since I read this post. It's so darn hard with this illness to remain positive and not fear things. Most of what we endure is so frustrating and ongoing that it's hard to 'not' fear the unknown...because we never know what's coming next. With Lupus it's almost ALL unknown.
And we endure countless doctor appointments and tests that don't always bring answers, just more questions and unknowns. It's been hard for me many times to keep my focus on God and trust Him through all that comes, because WE want to be in control...or at least feel like we're in control of everything. I think that's the part I've hated the most with Lupus...the fact that we are not in control of any aspect of it. IT seems to have all the control.
I have learned over the years with Lupus, that unfortunately, whatever is going to happen, is just going to happen and there's not a lot we can do to stop it. Sorry, I know that's not comforting at all....but I do believe that God never leaves our side through everything we go through, and even though we have to go through some very difficult challenges along the way, he promises us that He will never leave us or forsake us. He did not give us a spirit of fear...but of Love. If it's fear...it's not from God.
One thing that's helped me to get my focus off of the fear and unknowns, is whenever I feel myself going to the fear line of thought and starting to worry...I try to have a few things that I know will occupy my thoughts and mind and keep me so busy I don't have time to worry. One of those is photography and working with Creative Memories scrapbooking. Once I get started with that hobby...even if it's just easygoing work...I find my mind occupied for a length of time. I also like to browse through cookbooks and recipes and find new things to cook or bake. I've been trying to steer my family into healthier eating habits, so I recently subscribed to 'Cooking Light' magazine, and have found some really good recipes to try.
Lastly, I understand perfectly how difficult it is for your husband to watch you go through all this. It's so hard for our loved ones, especially our spouses, to watch us suffer and receive news that something might be seriously wrong. My husband has been my rock for 27 years, and he's spent countless hours on my behalf stressing and worrying...I can almost pick out the wrinkles in his face that are from me and my health. I'll definitely be praying for your husband too...I'll pray for a sense of peace and comfort for his heart and mind. I'm glad you have him to help you through this.
I'll finish by sharing a Bible verse that has become my favorite through all of my difficult health trials....
"Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, what is unseen is eternal." 2 Corinthians 4:16-18
God Bless.... :heart:
Thanks for the prayers. God has answered them and then some!
I have a new primary and she's awesome! She even gave me her cell phone number so I could talk to her after hours about a few things!
She asked if anyone did any biopsies of my rashes and was furious to find out no one has. She told me the next time I break out to come straight to her and she'd biopsy it. She told me to hang in there and that this could be a very long ride. She's realistic but also very gentle in being that way. She gave me a shot of decadron because my head and eye has been feeling so inflamed for weeks. She was concerned when I told her the specialists aren't treating me yet for the inflammation specifically and that they act terrified of steroids. She said it's smart to be careful but if someone is going thru inflammation, that too could cause damage and that's something to be careful of also. I feel so good today! Today was a first in weeks that I haven't woke up with that nasty eye and head pain that just grows worse as the day goes on.
My appt for the brain scan, ultrasound, etc... didn't go well on Tuesday. The radiology dept is awesome. But my hematologist visit afterward was so nasty! At first I couldn't figure out what was up with her and then realized what it was about halfway into the appt. Three weeks ago, I think it was, they were supposed to set up the mri appt for me and screwed it up. It was such a mess. It was because someone at her office wanted to set up an mri of my gallbladder along with an mri of the brain but they forgot info the insurance company needed AND ultrasounds are used for gall bladders, not an mri. We found out about the mess the day of my appt, and hubby had taken the day off from work so we could travel to it two hours away. So we had a big wasted day and had to wait longer worrying about a blood clot on the brain. The manager of the hema's office was defensive when we called her right at the start. She offered no apologies or even sympathy. Nothing but passing the buck. We let it ride. The appt was set up again. I was told I could ask the hema questions about my latest findings of elevated anticardiolipin antibody when she calls me later that day but she never called. The nurse did. She said the doctor is aware of the mix up with the appt with the mri. I told her I didn't want to discuss that with her but ask her questions about the elevated AA. She said the doc would call later. She never called. (Much later we were told to just come visit her after my scan and ultrasound and she'd answer any questions I have.)
Last Monday hubby calls to make sure all is set up for the MRI and ultrasound on Tuesday. They messed it up again. The insurance company was still waiting for more info from the hema's office again. Radiology said they've been waiting on the hema's office and no one has gotten in touch with them again. I have had an MRI done, 2 CT scans, an ultrasound and LOTS of x rays within a year's time and this is the first there has ever been a problem. Hubby had to stay on the phone all day Monday between radiology and the hema's office making sure the hema's office manager was taking care of it. But he never lost his cool. He stayed calm and handled it.
So I go to talk to the hema like I was told I could after the scan and such. I'm told I'm scheduled for a follow up appt and had to pay fifty bucks co pay. We weren't prepared for that but squeezed enough money out to pay it. The nurse comes and takes me back. I thought she was going to take blood but she said it wasn't in my file, so we just did the usual. Weigh in, temperature, bp, etc... She put me in the room to wait for the hematologist. The hema comes in and doesn't seem anything like the nice person I had met at my first appt at all. She seemed to be in a really foul mood right at the start. I thought maybe it was a bad day but later realized we had been labeled by her office employees already. She was snobby and contradicted herself to the point I wanted to ask her if she was alright because it was WEIRD.
She said the problem with the mri appt was our insurance company and her people went to bat for me on that and defended them in a way that was sickening. We hadn't even brought it up. She did and was offended over the problem. The last time I was around someone that defensive I learned the reason they were that way was because of the amount of complaints they receive and have to cope with already. Know what I mean? It's so bad there that it's an everyday event to play "it's not our fault". She didn't want to answer any of my questions. She kept saying she's not qualified to treat me but can treat my symptoms. I had did some homework and understood that with the deficiency I have you need to have someone qualified with that specifically to treat it. I told her that and she said why would I do that when all I have is a mild form of it and that no one will treat it, only my symptoms. She said they only treat the severe forms and I know that's outright bs. I've met some doctors that I never wanted to see again, but she takes the cake. She and her medical staff. At least at my old pcp the staff would apologize for mistakes... maybe it didn't sound genuine, but at least they offered one you know? lol.
She told me she wants me to take an aspirin every day for the elevated AA, an iron supplement, finish my Vitamin D, and to stay on the plaquenil even though she doesn't think I have lupus now at all. She put my new pcp down so bad for giving me the decadron Monday and I asked her what are we supposed to do? We're waiting on the pro's to figure this out and treat it. In the meanwhile I have pain that makes me wish I was dead sometimes. I reminded her of this nasty eye and head pain. She started preaching a sermon on how people who aren't qualified have no business dispensing drugs like steroids. I asked her again what are we supposed to do while we wait for treatment? If it is inflammation, then it's causing damage and that could be serious. She said it's probably just migraines or cluster headaches. She actually down played my pain. I asked her is it normal to have a migraine or headache for weeks? She said actually it is. I asked her what is the treatment for that? And she put her foot in her mouth with her answer, "Steroids." She got angrier after that. It didn't matter what I said. She thinks no one can dispense steroids except specialists and I told her that's crazy because not one specialist I've seen yet will give me any and it's been over a year now.
Hubby and I have thick southern accents and do not use a high vocabulary. We may not say it but we know what it means. And she treated us just like we were hillbillies and when we started asking hard questions, she got uncomfortable and wanted to leave asap. She asked did they take blood before I was put in the room and I said no. She looked frustrated at me and said she put in my file for them to do that. As if they had and I was lieing about it! She looked in the file and saw they didn't and the look on her face was funny to me. I had to giggle because she's so sure that her office doesn't do anything wrong. She said she'd tell them she wants more blood work done to check for clots. She thinks I should see a neurologist for my head pain and will call me with the blood test results and brain scan results.
I've had some nasty doctors before but that one takes the cake. There was more to it but I don't want to wear your eyes out. She just kept contradicting herself and getting angrier. Last appt with her it was this deficiency I have and Lupus run hand in hand and when hubby asked her to expand on that at this appt she said she never said that. She kept doing things like that.
We're going to let the primary take over. She can make the referral to a neuro for me. I'm sure I need to see one. I realize that but I'd rather my new pcp pick one out. I'm looking for a specialist in this deficiency and could use prayer concerning that find...since it's supposed to be a rare disease. The rheumy seems to think that the deficiency could very well be causing either all or some of my pain. Despite what the hema thinks, I'd rather have someone experienced with the deficiency treat me for it.
Looking at the situation from here right now I know what the problem is. I didn't ask God His opinion of this hematologist before I went. I just went with what the rheumy wanted to do and what she suggested instead of asking Abba what He thinks is best. BUT like always He pulled a lot of good out of it because they did find the deficiency which is hard to find and the elevated AA. I feel sure the pcp I'm seeing is where God wants me to be. She was the one that did lab work and found the signs that point to possible Lupus, sjogren's syndrome, and Raynaud's. I went to see her one day when my original pcp was closed. I should have stayed put! But...anyways I'm with her now and she has me feeling MUCH better! Physically and emotionally! What a difference a doctor can make, huh?! :8:
THANKS for your prayers! God has turned things completely around!
God bless each of you!
Oh and Lori...you are so right about the wanting to be in control. It's so hard to let go sometimes.
Thanks for the words of encouragement, Amanda and Lori. It helped me to get through a rough spot and I appreciate all the prayer warriors! I should have asked for prayer sooner!!!
Welcome back! I am sorry to hear about your horrifying experience. What wonderful words of advice from Lori, she pretty muched summed it up. I have often said this also, God did not give us the spirit of fear. Remember that you have friends here who care, and want to help you be unafraid. I am glad things are starting to look up for you! Sending prayers and hugs for you and your family. ~Angie
You are truly blessed to have the Father and a husband that loves you. I pray right now for healing for all of us hear, Amen.
I have a lot of love and care from my wife and my little girl. I can't imagine going through this without them. I can definetly relate to the forgetfulness confusion and constant headaches at the base of my skull, I have been going through a nasty time with that myself during this flare, I am waiting to be scheduled for an MRI and a PET scan on the brain, I think they just want to se if I have one :) also going in today for an interview for cognitive dysfunction, haha they want to verify I have a brain then tell me it doesn't work :) one has to keep some humor or we will go crazy. Let us know how every thing turns out. was going to type more but there went my train of thought. God bless.
Sorry to hear of your nightmare doctor experience. Things like this happen far too often. I know exactly what you mean about the reasons the Dr. was so defensive. I've seen so many businesses that are like that. They are so completely screwed up that they expend all their effort on C.Y.A. and damage control because they get constant complaints. They either sit down and set policies to fix it, or they circle their wagons and become a angry defensive island of people. The bad part, is that they never actually do whatever it was they originally set out to do by getting into the business to begin with. The customer always suffers in the end. When it's a business that deals with life and death health issues, it's scary. Anyway, it sounds like you are heading in the right direction, and have the support you need. I hope you find a new Dr. ASAP.
PS-This may be an odd question, but who is Abba?
(I don't think you are talking about the band)
Thanks for your kindness, Angie, and the encouragement. It's a good reminder that He didn't give us a spirit of fear. Something good comes out of that too though I suppose...fear makes me cling to Him like saran wrap! KWIM? :nervous:
Hubby is doing better. After a few quiet days of no surprises, lol, he's back to his calm self. We're both feeling better with the new primary on board.
scubagramplit, thanks for the encouragement also. I'm so glad you have family support too. Let me know how the scan goes, okay? The one I had was so smooth. The easiest one I've ever had done. I'm praying about your pain and that God will bless those sweet helpful ladies in your life special. What a blessing it is to have loving family to help and care!
Rob, you said exactly what I meant to say but so much better and with much fewer words! Lol. Yup, the ol' damage control bit. I wasn't too surprised until I saw the doctor do that and much worse than anyone there too. I'm still shocked.
Did you hear about how upset doctors are about the physician review websites and they want patients to sign gag orders that they won't complain about them? I understand how someone could use that to harm a doctor's reputation wrongly, but good grief. What is with so many doctors?!
Abba is a word used for God in the New Testament. I'm a Heavenly Daddy's girl. Also my earthly father is up there with Him. I miss him very much.