View Full Version : Help me help my husband
12-18-2006, 06:42 PM
Hi, I am new at this. My name is Grace, and I am 54 years old and my husband Larry is 60 and has SLE lupus, acute pancreatitis, sjogrens, and hashimoto's thyroid. He has had acute pancreatitis since 2000, but we just found out since around the first of July that he has all of these other diseases. I just lost my mom in June, so this has been a terrible year for us so far. I am scared. I don't want to lose him. I want to help him as much as I can, but I am so depressed and it is hard to hide that from him. :( He is not near as fatigued as he was, and I am thankful for that, but he did lose his job, as he doesn't feel like running any races!. He had a colonoscopy and that was good, he had a stress test and that was good, his lungs are good, no spots, the main problems he is having now are the back of his head hurts everyday, he has a white looking rash on his legs, really strange looking, not red at all, and lately he has had a bad time with his stomach being bloated, and he is of course depressed. He had a CT scan Friday and we got the results today. He has a cyst on his pancreas and the tube from his pancreas is partly blocked by what the doc thinks is a stone. He has had alot of cysts on his pancreas before, and they were always pseudo cysts. He is scheduled to see a gastro doc but can't see him until January 17th. Anything you can tell me that would be of any help to me would be so appreciated! Do any of you have any of these same problems?
12-18-2006, 07:29 PM
Hi, Grace - I'm sorry you and your husband are having such a difficult time of things. Having multiple medical problems can be really stressful. I've had pancreatitis several times, so I know how sick that can make you. Since your husband has had pancreatitis for so long, he probably has "chronic pancreatitis" as opposed to acute pancreatitis, which can make you ill enough to require hospitalization. Acute pancreatitis usually resolves within a couple of weeks to a month, but sometimes, when damage has been done to the pancreas, the symptoms become chronic. Has your doctor recommended any diet changes or using supplemental pancreatic enzymes to help your husband? I do best when I eat a diet low in fat, and I also take supplemental digestive enzymes, which seem to help.
I'm glad you are reaching out for support - lupus can be very hard on families. If you have any specific questions, please feel free to post them, and someone will try to help. My older brother is about your husband's age, and he also has lupus and chronic pancreatitis, so I know it's a hard situation to manage. I wish he could get in to see the specialist sooner - waiting is always so hard.
12-18-2006, 08:22 PM
Hi Mary, thanks for the reply! Larry's pancreatitis is still listed as acute. It is idiopathic because the docs never found out what caused it. I was under the impression that chronic pancreatitis usually occurs when the patient is a heavy drinker, and that is not the case with Larry. But.....I will be the first one to say that I don't know all I need to know about any of his diseases. I am sorry that your brother has the same things going on. How is he now? I'm sorry, but I am full of questions. How long has he had these diseases, and what are his major symtoms? What do his docs tell him? I might add that when Larry was first diagnosed, the rheumatologist said he had "mild lupus." Larry and I both agree that if he has mild lupus, we never want to see a severe case! I hope your brother is doing okay. Please tell me how he manages.
Yes, Larry and I are very careful with his diet and have been ever since we found out about the pancreatitis. He eats very little fat at all, and watches his sodium and sugar intake. I forgot to mention that he was diagnosed with very high cholesterol just a few weeks ago. I thought this was odd since we watch his total fats so close.
12-18-2006, 09:27 PM
As it happens, my older brother is also named Larry - I guess it was a common name in their generation. Alcoholism can cause chronic pancreatitis, but it can also be caused by a bad attack of acute pancreatitis that damages the pancreas, gallbladder disease, hereditary pancreatitis, a deformity of the pancreas called pancreas divisitum, and many autoimmune diseases, including lupus. When doctors use the term "mild lupus", they don't really mean that the symptoms are mild - just that there is no organ involvement. Some of the most disabling symptoms of lupus - fatigue, joint pain, brain fog - are pretty much the same whether you have "mild" or "severe" lupus. But in "severe" lupus, the internal organs are often involved and there can be life-threatening complications. And with lupus, sjogrens and hasimotos, it's probably hard to tell which symptoms go with which disease.
My brother Larry was diagnosed with lupus a couple of years after I was - he had a lot of infections and other problems, but no one ever considered lupus until aftet I was diagnosed. His lupus is also "mild" - no organ involvement - but he has bad discoid lesions, and joint pain. In his case, he is a reformed alcoholic and a smoker, so who knows what effect they had on his pancreas. But since I've also had pancreatitis although I've never drunk or smoked - I don't think the alcohol had much to do with it. He ended up having surgery to resect part of his pancreas and re-route the ducts leading in and out of the pancreas - I don't remember the name of the procedure, and he had to go out of state to have it done, but it did help the constant abdominal pain he was having before. He still has to watch his diet and take digestive enzymes, but he is much better since the surgery. He takes plaquenil and NSAIDS to manage his lupus. He was able to get social security disability fairly easily, so maybe your husband would qualify as well.
Both lupus and Hashimotos can cause a person's cholesterol to be unusually high regardless of their diet, so many doctors prescribe a statin drug to manage the cholesterol. So this might be something to discuss with his doctors. Lupus can really increase your risk of heart disease, so a cardiac workup and a heart-disease prevention program are probably a good idea too.
12-18-2006, 09:55 PM
Thank you Mary. Larry has already got a disabilty attorney, and we have to wait until May to file because he worked 4 hours in November, 8 in October and a few hours in September. This is rediculous. We are fortunate that we have 2 rent houses and some savings, or there is no way we could even begin to make it. I have alot of medical issues going on right now, but not anything autoimmune that I know of. I am taking lexapro, and have been since my mom died in June, and am now having therapy because of my bad back. It sounds like your brother has had an awfully rough time, and I am glad that he is doing better since his surgery. Larry may have to end up having some kind of surgery before this is all over. I appreciate you sharing all of this with me, because it gives me hope. My daughter's dad left us when she was 15, she is 31 now, and I married Larry only 7 years ago, and I just don't feel like we have had enough time together. He never complains, no matter what! I can always tell when he is hurting the most, but he won't say anything unless I ask him. He is seeing a rheumatologist, a cardiologist, a counselor, opthamologist, gastro doc, dermatologist, his PC doc and was seeing a physical therapist for his shoulders and neck. He takes Plaquenil, hydrocodone 10/650, Ultram ER 100, Crestor, Cerefolin, Econazole cream, 1%, Synthroid, and nexium. I think I got them all!. He just started taking Crestor a couple of weeks ago for his chlolesterol. I hope it will help him.
It is ironic that my husband's name and your brother's name are the same. Keep me posted on how he is doing please.
12-19-2006, 08:02 AM
I will pray for him... I'm really sorry. I know how much that sucks.
12-19-2006, 09:13 AM
Bethany, thank you! I know we have alot of people praying for him right now and I so appreciate that. Before he got these diseases, I had never even heard of most of them before. Talk about living in a shell! When I first found out what he was diagnosed with, I felt like he was given a death sentence. The problem is, he is confused by what his doc calls "mild" lupus. I think in his mind, he thinks it will always stay mild. I am beginning to realize that is not the case and that is why I am so distraught. We can sure use your prayers! Do you have lupus, or is it someone you care about?
12-19-2006, 09:47 AM
I do not know for sure if I have Lupus. My bloodwork kind of indicates it but I have to get it checked out.
I have Reflex Sympathetic Dystrophy (an auto-immune/nuerological disease). it would makes sense if I have both.
I havn't been able to update my website... but I have my entire story on there. http://missbethanyann.tripod.com
12-19-2006, 05:36 PM
I did visit your site. Let me just say that I wish I had just a part of your strength and your faith is awesome. If I were your mom, I would be so proud of you!