Cured4Real, Marji...How are you?

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sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 8/23/2007 8:05 PM (GMT -7)   
Hi, Marji. I haven't been on here everyday, but I have been playing catch up after a couple of days at a time and I haven't seen too much from you since your bad time this past week. I think I did read a couple of short replys, but nothing about yourself. Are you and your son doing better now? I was just looking forward to hearing about how you're doing. My appt. with my rheumy is tomorrow and I was hoping to maybe get "pumped up" like a boxer or something. I think I'm ready for him though. I just hate the stress these appts. bring me. I feel like a lawyer presenting a case and if I don't do a good job, my client (my health) losses! Take care of yourself and keep us informed on how you're doing. I'll let you know how my case (or my appt.) goes. tongue
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/24/2007 1:17 PM (GMT -7)   
Hi Sharen--

Thanks for asking. I've been still not able to deal with the sunlight and very nauseaus and tired. I'm trying desperately to lose weight and I've lost a few pounds because I simply cannot eat, that is not normal for me and when I do eat it goes right through me undigested. I was on a good anti-nausea medicine call zolfran (ondansetron) and it was helping some, but my insurance will only pay for twelve pills every 26 days which doesn't make sense to me. My ultrasound was unremarkable except for my liver, which didn't help matters, so I am no closer to finding out why this is happening. I requested some enzymes to help me digest my food, but my PCP wouldn't give them to me without some kind of diagnosis for this, so I see the gi guy and he will probably tell me that it's my liver getting worse and just take my money. I guess it could be the plaquenil, but with my risk for liver cancer and the possible prevention of cancer with plaquenil, I won't stop taking it. It does help. I'm really red and itchy but kidneys and liver normal they say. I've been too tired to pick up the tests myself to see what they really say. If the liver is elevated, they just tell me its normal because they can't do anything about it. I think that's crappy because it makes me feel like an insane person when I'm sick like this. I guess an anti nausea drug is something I will have to add to my arsenal of pills and I really don't mind that. My repigmentation is going nowhere a little is coming back, but too little to make treatment worthwhile. I feel like depigmentation is not a good idea either, but I'm not sure. I would like to be all one color, but it will increase my sun sensitivity. And I found my little white chihuahua pup dead yesterday by the side of the road, she'd been missing for three days and we had been calling and searching everywhere and I was frantic. We found her because my bf saw a group of buzzards by the side of the road and by the time we got to her there wasn't much left but a skull and some paws, but it was her. I am very sad about that, I didn't expect that I was so attached to her, she was always the one getting into trouble, kind of disobedient, but the house was really empty without her. My other dogs are sad as well.

On a better note, I'm trying to finish the last chapter of the first half of my third novel, not that it will ever be good enough to be published, but I don't care. Maybe someday I will bind them and give them to relatives as presents, I don't know. I'm sorry if I sound down, actually I'm doing surprisingly well, besides the nausea and gi stuff and have managed to swim a little every day and that is helping me. My son's MRI was declined by medicaid, so the docs are fighting to get it done. He is in a lot of pain but he's on toradol and that has been helping. He can only take it for five days and when that time is up I don't know what we will do. I tried to get the doc to test his ANA, but she wouldn't but she is testing his thyroid which is good. I'm so worried about him. His heart is a nerve problem, his epilepsy is a nerve problem and now he's having neuropathy, sometimes very severe, you would think they might figure out that he may have something else wrong. He has my red face, though not as bad, and my dry bumpy skin. I do hope they manage to get the MRI, maybe he will have some arthritis and get to see a rheumy who can run the right tests, I also have a good pain mgmt doc that would run the proper tests for demyelinating diseases and ai diseases as well. My PCP only seems to test the same old stuff. She's good for calling in things and pain, but only sticks to her little section, fair enough.

I hope everyone here has been well. I'm running out of nausea medicine today and will have to go back on phenergen, which seems to make things worse, but it will have to do or some compazine maybe. I need the antihistamine part of the antinausea medicine as well, because it helps with the itching. I'm down to meat and green vegetables/ sometimes carrots, with a little low carb ice cream at night so I'm trying the gluten free. Nothing seems to be working.

Sorry this is so long, I need to cheer up. I hope things go well with your rheumy and glad you seem to be doing well.


Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

Post Edited (cured4real?) : 8/24/2007 9:42:16 PM (GMT-6)


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 8/26/2007 4:14 PM (GMT -7)   
Hi, Marji. I am so sorry to hear that you're still having so many problems. You make me feel very fortunate actually, that I'm not having more to deal with. I know that sunlight really seems to be a problem for everyone with lupus. I'm not sure if it's actually the lupus causing the sensitivity or the medicines, but I just have to avoid that. It does stick me inside more than I like though.

That's good that you are losing weight as I know you've mentioned wanting to do that, but the undigested food doesn't sound like a healthy way to do it. That doesn't make sense about your insurance not covering the meds that you need. You know I've had a hard time getting needed things covered as well. I think the whole system is screwed up! Will the GI doc not prescribe the enzymes you need for the digestion problem? It looks like he would since that is his "area' and he will know the problem you're having. I don't want you to become upset with me and I certainly don't want to offend anyone on this forum, but I am feeling glad that I did react to the other drugs used to treat lupus (even while some say they are safer). While I am dealing with this blood sugar issue from the prednisone, I am not feeling sickly and struggling like I did when I was trying those other meds. I'm not so sure some of these problems don't come from these toxic meds. You shouldn't feel insane knowing you're feeling like you do. You know you're body much better than the docs and there has to be an explanation for it. This disease and the meds used to treat it are so complicated, I think it might just take more than the average doc to find it.

That was so sad about your puppy. I have a sheltie that's almost 12 years old, that I've had since my car wreck. She's like a child to me. I don't know what I will do when anything ever happens to her, and she is not in the best health herself. I'm sure the grief with your dog's loss and the added worry you had for several days there could be adding to the problems you're having too. Stress can be a bad trigger for us. Especially something so emotional. Not only that, but the additional worry with your son's health; it sounds like you're being overloaded! I hope his docs can work to get that MRI for him, or someway he can have more testing to get him the help that he needs. Since he is dealing with so much pain, might the PCP refer him to your pain mgmt. doc that you feel would run the correct tests for him for possible help there? I know I'm not aware of what all is involved, just trying to think of a possible solution. I know you and him both need a break!

I had my appt. with my rheumy Fri. I really appreciate all of the info. you gave me as I feel it helped me to communicate more effectively with him. I feel like he really did listen to me. I was so proud of him, he didn't say in-grown toenails not one time! He is the first doc I've ever had thank me for what I'm doing to try to "help myself". We began discussing my taper to 9mg, with Fri being the 5th full week. I told him of some "simple/regular" problems I've had while tapering then I explained what I've found my blood sugar (BS) doing. I told him how those higher BS #'s corresponded with the infection that had been showing up in my toes. I explained that by altering my diet, I was learning to not only control my BS, but also keep my toes looking normal and free of infection. I gave him examples of the high #'s I've gotten vs. low #'s recvd. when on 10mg prednisone while consuming exactly the same thing. I told him of the fasting and after breakfast #'s being well within the normal range. I explained that while I was trying to control my #'s, it wasn't always effective because I've got a lot to learn and sometimes, they still go way too high. He did not feel like I needed to bother with the "sticking my fingers" and worry of checking my blood sugar regularly. He said that periodic high readings were not a problem; that it was consistantly high readings you had to worry about. He said that was the purpose of the A1C test. We did talk though about the A1C test results being altered if I was controlling it by my diet. I then asked him about that glucose tolerance test and he didn't think that would tell us anything useful. He explained that since we are already aware of a problem, his course of action would be the same regardless of the test results...try changing my diet using the method I am now, to control my BS and continue trying to taper the prednisone. He did say that he would need to check that A1C much more often now that he was aware of the problem so he'd know if there was going to be a bigger problem before it hit me. He agreed with my PCP in that my BS should be going down now that I'm taking away prednisone. He also said that since my weight isn't an issue and I have no family history of diabetes, that the medicine alone wouldn't cause diabetes. I, on the other hand, happen to be of the opinion that since no one knows why my BS is doing what it's doing, I SHOULD keep a regular check on it and try to keep my BS as low as I possibly can. If it never goes high then I will be more certain to avoid those consistantly high readings. I feel that is a more sure way of avoiding long term diabetes. With all I've already been through, I just can't look past that "I don't know" factor. I'm just afraid with all my body has been through physically with my car wreck, brain injury, and several follow-up surgeries; that it may behave just a little differently than the average case they treat. I mean, they don't know why it's doing this, they don't know why I've reacted negatively to almost everything other than prednisone they've tried on me. He did send me for more bloodwork and wants to follow-up again in a month. He is leaving me at 9mg for now to see what my BS does. There is just too much they don't understand for me to be comfortable with not worrying about it. If I worry with it unnecessarily and don't get diabetes, then fine. My time/effort wasted (even though I don't feel I've wasted it because it assures me I'm doing what I can). But if I don't worry with it at all, let it go as they suggest and do get diabetes; then it's done! I've got it--for life! There will be no undoing it! I don't want to look back and say "If I'd just went with my gut and kept a better check, I might have prevented this". I just feel better knowing that I am doing all I can to prevent a problem. I did buy me a cheaper meter and test strips to get me
through until time for my refills on my first meter. I am hoping my body will better adjust and my BS stabililze before time for my next taper. Either way, I'll be working to help it all I can. I do feel like my rheumy is concerned though. At least he didn't say, (like my PCP did) that he didn't know why it was doing that and leave it at that. He knows it is a problem and at least he will be trying to keep a better check on it. He even emailed me just yesterday (on Sat.) saying that he had gotten my bloodwork results back and ask if I'd like him to send them to me as an attachment in another e-mail. I replied late last night and said that I would and that if there was time on my follow-up appt., I'd like for him to explain a little more about those values to me. I already had another e-mail this morning (Sun.) where he'd sent those test results with hand written notes trying to explain a little to me. I do know when my PCP ran that A1C just 3 weeks ago, it was 5.3. This test has an A1C of 5.5. I know that is in the good range, but isn't that a little higher even with me controlling my diet? The test that my PCP did only had 2 weeks of my taper on it. This one has 5 weeks. There must be a little more spiking occurring for that value to have gone up...right? Anyway, I feel like my rheumy is trying with me even if we don't completely agree about everything. He certainly works with me much better than the others did. My appt. lasted 40 mins this time and I felt no pressure! I also don't know many docs that would e-mail you either...much less on a Sat or Sun. Sorry this is SO long. Just trying to explain everything about that appt. Take care of yourself and try to cheer up. It seems like things can only get better, right? Let's encourage that by thinking they will. I'll remember you in my prayers. Thanks for your Marji, despite all you're dealing with.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/26/2007 7:19 PM (GMT -7)   
Thanks, Sharen,
Doing better. Glad to hear your appt went well. Technically, I don't have diabetes either, I have "metabolic syndrome X" or "Prediabetes" and I take Metformin to prevent getting diabetes, it helps me use my insulin better. I score normal at times on blood work, but I hate my sugar bouncing around because it started making me feel bad and when that happens, its worth getting some treatment to make you feel better. It was either the diabetes stuff or blood pressure meds, and since my blood pressure was caused by the high blood sugar and the metformin is supposed to help my liver, it works out. I still think testing insulin is very important so if you get to having problems, they should test that. Some docs just aren't on the bandwagon yet with metabolic syndrome because so many many many people have it, and they used to think it wasn't dangerous, but now they know. Modifying your diet is really key, because if you don't do it soon enough, you will end up on a really really restricted diet later on in life, though people like me it doesn't seem to matter what I do! I'm so nauseaus I don't feel like eating much, and it's a blessing with the dieting. I need to lose between thirty and sixty pounds, I need to be at the low end of my ideal weight, so I have to really work at it. Well, glad all went well. Thanks for thinking of me. The rest of my dogs and me have gotten over our grief and are adjusting. My bf wants me to get another female chihuahua now. I don't know about all that. Well, I'm glad you are watching your sugar. Had I done that earlier I wouldn't be as sick as I am now, or at least I could have modified my diet earlier.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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