Our Friend Gypsi Needs Your Help
On the day after Thanksgiving of 2013, Gypsi's life changed forever.
She developed severe pancreatitis. At first the doctors thought it was a fluke.
Two weeks later she developed reactive hepatitis (not viral). That is when she was diagnosed with a rare disorder called S.O.D., Sphincter of Oddi Dysfunction.
For more information than you ever wanted to know abut S.O.D, hit the link. It's a basic understanding of the disease, but it is acute and there is no cure:
Since then Gypsi has spent over 50 days in the hospital, and had two life threatening procedures to attempt to relieve some of the pain. She developed dehydration, anemia and malnutrition due to the inability to eat and drink daily. This has led to the implanting of a port through which she gets 3 liters a day of fluids and electrolytes and a J-feeding tube, through which she gets nutrition and medications. She is hooked up to this 12 hour a day. She is easily fatigued and requires a Personal Care Attendant.
Gypsi is unable to work, but frustratingly enough, also hasn't qualified for Social Security Disability. This has led to getting more than $11,000 dollars behind in her mortgage, $2000 behind in medical bills, $400 behind in vet bills and $5000 behind in other miscellaneous bills.
Adjusting to this new normal has been more than challenging emotionally; having always been the primary provider for her family, having one child left at home and worrying about losing her house.
He was thinking there could be an infection or a blood clot trying to form.
The ER ran a battery of tests (ultrasound, x-ray, white cell count, lipase, etc.) and really didn’t find anything abnormal. What her symptoms are currently indicating (after spending the night in observation), is that there is significant intestinal inflammation, possibly due to her continuing issues with diverticulitis, as I mentioned in a previous post.
She hasn’t been admitted yet and is still in observation. In my last conversation with her about an hour ago, Gypsi said she’s going to have two more conversations with the docs there to see if she’ll need to be admitted or if she can be managed at home by me. Currently she’s NPO (nothing by mouth), until they can figure out exactly what’s going on.
More updates as they become available. - Kevin
As soon as I find the password and such I'll take this down. For now, I want too let you all know that your donations, love and prayers have meant the world. The last of the settlement has finally come through. The mortgage is paid up, we are working AGAIN on a modification and they continue to give me the run around asking for the eXACT same documents over and over. Prayers there plz! We have a new ramp on the front of the house and a chair lift/stair chair! I would love to stay here for at the very least 9 months to get my credit up and situated before having to move. I would like to stay here a little longer to get grounded. I have started a business to try to sell at least $65+ a month of my jewelry that I make. Soulfire by Gypsi Moon LLC. It actually benefits me with MA-EPD, Medical assistance for employed people with dabilities. It reduces my monthly premium from the state. it is secondary insurance to Medicare from SSDI. This week we celebrate our youngest family member, our baby's HS graduation. Then off to college this fall. My middle girl just bought a new car and the oldest is getting married in October! I am purging and hope to get some things done before the time comes we actually HAVE to or want to move. Next week I have my thoracic spine fused from T5-9. Prayers please and a visit and gentle hugs please. If you can send that love to my family too please that would be great. Again, thank you all for your support. Blessings to you all! Soulfire by Gypsi Moon LLC is on facebook and hopefully on it's own website soon! Etsy too! Love, Gypsi
GINORMOUS heartfelt THANK YOU to online donors as well!!! I finally got a court date, SEPTEMBER 30th. Lawyer said they can go back to the beginning of the disability but they DON'T have to. So, Prayers, love and blessings, may they be returned to you 7 fold. Eric! I would love to meet your wife and babies!! To everyone, I love you so much. Thank you!!!
So much pain last night. I'm tired of having a leash, or leashes. However, I am grateful that soon the "food" I'm getting through my feeding tube (GJ tube) is painful. It makes the PICC line I have seem like a nothing. My stomach is fusing to my outside to create the stoma (hole) and it's uncomfortable. If I'm hooked up to my feeding (which is 24 hrs a day) AND the fluids (which could be up to 12hrs a day) it feels like I'm in some sort of Olympic event trying to get to the bathroom without skipping rope on the way. Heck, I'm not the most graceful woman in the first place! Anywho, I'm grateful to my friends Erin and Al who both came to pick me up for my ride home! Al lives in Hastings and so I slept/rode all the way home. I am blessed with such good friends. Everyone is finally over the 'crude' at home and thankfully I didn't get it. With my immune system compromised it's a wonder! Thank you all for your love, support in every way you've shown it. My labs are still showing very poor nutrition, but I'd only had it for two days when they took those. I go for more today. Many people are going through so much with their families, please keep them all in your prayers and thoughts. Many blessings and love to you all!!
Thank you all, so very much. I am finally getting sprung. I do, however, get to go home with more medical equip. Since I've been unable to completely void (empty my bladder), after each scan I'm apparently leaving behind 300-650 ccs. So, guess what I have!!!! Catheter, yup. I am hooked up for a week. They've actually increased my pain meds for a week. It's pretty sexy though, I rock this catheter and PICC line!
Hate being in pain. Hate pancreatitis. Stuff gets old. Just not feeling well. HATE to make the call to go to hospital. I HATE to be away from my family and have it be so stressful for everyone. It's hard to feel like a burden. I would rather care for everyone. Continue to pray for my baby girl. she's still not 100% and they still are doing tests. Still no word on SSDI other than now we go in front of Administrative Law Judge, since I was denied. More fighting. More hoping. Please pray that Kevin is able to find work. we have no income, so please keep us all in your prayers. We're all just tired. Tired of medical issues, tired of having no income. frustration can lead to depression and the morphine doesn't help. It's hard to feel like a burden and not productive. I have the MOST wonderful partner and children. I am so blessed. We just need more of a boost, in your prayers, meditations, sending love and healing and ask the Universe to be sending money to keep up on the mortgage. We are selling things here and there to make bills, electric, gas, groceries.
It's been tough. Denied again from SSDI, we now get a date before a judge (again) to share MORE information. Hoping to get the OTR because of DIRE NEED. I told them I may lose my house if I have to wait another year before that hearing. Hoping to go forward asap. Today is a particularly bad day with my spine. Grateful to be surrounded by such amazing love with family and friends.
First and foremost, I want to thank all of you for your kindness and generosity. I know not everyone has money to give, yet in turn will make us a meal or send us a prayer or a gift card for gas. You ALL touch our hearts in a million ways. YOU are the reason there is hope for humankind. Everytime I think I have an episode and I go longer than 5 days I start getting my hopes up. I start thinking, "OK, maybe now I can get my practice off the ground!" and all that jazz. The hope begin to build and I have a vision of where I can go from here and then BOOM!! It feels like I've been cut off at the knees every time. I tend to take it a be better each time. I think, 'How will I possibly save my house If I can't work.?' Then I remember my faith and my prayers. I am here to be of service, I always have been. When there is something MY Creator wants me to do that can best serve the needs of the whole over mine, Creator ALWAYS makes way. I wish to be here a very long time, serve my family and community and find joy in that service once again. So, if today you have a moment to be kind, don't let it pass you buy. It may be the ONLY kindness anyone has ever seen. It may take you only a moment and it may mean little t you, but it would mean everything to the other . I am in hospital now since last friday, and I believe today is wednesday. Social security has still not settled. I am in the middle of working on another mortgage reduction, but don't always feel well enough to go on. Need your love and prayers. Prayers for my family the most, this is hard on them and that hurts me so much. It may take more month for them to return. LOVE YOU & BLESS YOU ALL Gypsi/Lynda
Thank you for your donations. Thank you doesn't cover it.
With all the new issues, this week has been very uncomfortable. Tuesday follow up at Doc and my lipase was more than twice it's highest range. Pain kept me awake all night and this morning I went by ambulance to the hospital. United provided comfort care for the pain and then made a plan to help me manage it at home with increased dose in morphine for a few days. Looking at Idiopathic Pancreatitis, going to make an appointment for the GI doc and get some plan in place. I have my appointment for AUGUST for the UofM Marty Freeman, a renowned specialist for SOD and Idiopathic Pancreatitis.
Thank you all from the bottom of my heart. Your love, kindness, generosity, thank you. I was released yesterday, Wednesday. Man, it is so good to be home, see my baby girl and my sweetheart, my furkids AND MY BED!! No one is sticking a thermometer in my mouth at 4am. I'm sure Kevin would do that if I get nostalgic for United. They've recommended homecare, PT and OT. I feel weak, exhausted and bone weary; but my heart is full because of you all. I had my ortho appt for my shoulder today. You see, I thought, 'hey, the SOD has calmed, I can focus on my other rare disease, EDS.' So I had that Arthrogram last week and then in hospital for pancreatitis, digestive & pain issues for 6 days. My ortho dude said we're looking at prosthetic shoulder, HOWEVER, he won't touch it until after we calm things down with SOD and have it managed. I thought it was 'managed'. I was often uncomfortable, still losing wt and such, but I thought I was out of the woods with severe issues. Nope. Oh well, things could be so much worse. I will have PT for my shoulder as well and try to strengthen it as much as possible. I need both knees and right hip replaced, but you often need a walker for that and last time I used a walker with my hip surgery I dislocated my shoulder and had to have my 3rd shoulder repair. I will work to stay strong physically. I am blessed beyond belief with love of you all. I have the kindest, most loving partner.
I have 4 herniated discs in my thoracic and two bulging in my lumbar. I have severe arthritis in my spine and have a fusion at C5-6 & 6-7. I had the epidural at T6 April 25 and it lasted pretty well. The pain of having it sucked rocks, but the after effect was a dream. It has been wearing off. I do get to have it 2-3 more times. Next time he vowed to sedate me. He said there was no disc left in that area, therefore, causing significant pain. I've been having migraines daily and last week and the previous week I had ONE horrible one taking away each ONE full day. The daily ones just make the days difficult to navigate and socialize. Pain has made me more of a recluse. Getting support online is the best I can manage. Today, woke with another terrible one; I cannot take pain meds for 24 hours before the test I am having tomorrow. I am having a GI study. I will eat something radioactive and they will follow it to see when and where it causes pain. this is a FOUR, yes FOUR hour test. Since my labs are coming back normal (except the RBCs explaining my I'm tired more than usual), so they are seeing if they can figure out WHY I can't eat. I'm still spasming even though they sliced up my common bile duct sphincter and my sphincter of Oddi. There is still muscle there and it's still causing pain. ON THE BRIGHT SIDE: I've maintained a weight for nearly 2 weeks! I don't know how, I barely ate for 4 days of those two weeks. I've been trying to get more calories in and my lovely daughter Cheyenne got me some delicious Fish Oil. It might be the key. I'm a little nervous to say something and have it change, which is why I haven't said anything. Now, if someone could please make some sun come out for a week at a time, that would be delightful. Thanks!
I miss being able to comfortably navigate a crowd. I don't dislike crowds for the simple fact they are crowds. It's the fact that I "look" normal, therefore, the pain in my hips or knees or belly (esp belly these days) could overwhelm me at any moment. At that moment I would have to be with someone who could get me home, meds and/or comfortable. this means, I cannot be the one who picks up my best friend Barron and goes to Cinco de Mayo for a wonderful day of festivities in St. Paul. I cannot walk a block. This makes me sad. I'm just going to bitch a little. I'm so grateful for so many things, please don't get me wrong. I really would love to see the May Day Parade someday, or the Cinco de Mayo Celebrations. Kevin would take me, but he has to work. OK. Yes, I have a wheelchair, but I can't navigate things on my own. SOMEDAY I will be strong and healthy enough to do these things.
down another 1/2 lb. I'm going to be honest. there are three parts to me that respond to this. part 1 (no alarm): "COOL! Haven't been this wt in more than a decade and it keeps going." Part 2 (increasing alarm slightly as if just noticing): "That's kinda too fast. You need to make sure you get more calories." Part 3 (the medical professional-Full alarm): "Hell no, this is not cool. This is way too damn fast and I have got to get more calories."
I was going to be so proud I maintained wt for one day. I got on the scale...smile on my face and thinking the very worse would be down 1/2 lb, but I ate some food yesterday, to the best of my ability. closed my eyes.... I wouldn't look down for a while... then... I was down ONE entire pound. 3.5 pounds in 7 days. No wonder I nearly passed out at the Dr.'s office yesterday. this is not cool.
Plumbing fixed thanks to needing a few inexpensive things and great help from my brother-in-law David and my sister Mimi helping wash dishes in a tub, just like camping. I've lost 2 pounds this week so far in the last 5 days. This weather is making me tired! The epidural did help with the pain. not 100% but it did and I'm willing to keep doing it until they don't let me. The next thing will be for the cauterization of my nerves that are in the back of my neck. 30 years of daily migraines and no relief and trying everything from acupuncture, massage, chiropractic, neck fusion, steroid injections, Topamax, I could go on... I'm ready to be able to concentrate. Then I am seeing my guy for a shoulder replacement, it subluxed last night again, pretty badly and I got it back in. 3 shoulder reconstructions they say they can't do anything else but replace it.
Still having plumbing issues. Pray to the Spirits of plumbing. no kitchen sink or dishwasher for over a week. Kevin is concerned if what he's proposing doesn't work or he breaks something we'll have to call plumber. Pray for the tax return that came fornicates in my bank account like Easter Bunnies.
SOD update: Lost 1.5 lbs in 3 days (.5 lbs a day) because I can't get food in. Still not in a scary wt zone (cuz I was chubby) but it's coming off too fast and furious at times. The pain in my side yesterday because of the pain meds was excruciating, but it's been getting worse this last week and I've not been on pain meds all week. Peace and LOVE!
I should probably have Kevin give me access so I can update, but this is fine. I want to make sense of it for all of us. First, here it is, almost 4am and the pain is keeping me up. the lidocaine wears off and the pain around ribs sorta hurts. oh well, tired and not tired. Starting from the top of my spine: I have to skip C1-7 specifics because they're missing from my records for some reason (however 5-7 are fused with metal/screws and cadaver bone). I have occipital neuralgia. I've had it for decades and it's only gotten worse. I've been in multiple car accidents T-Boned and Rear-ended; bucked off horses and assaulted on the job that has left multiple back issues and permanent damage. I've done so many things throughout the years to try to work with this wholistically, from yoga (as a yoga instructor even), PT, acupuncture, massage (weekly) Chiro (weekly), ETC and I still do many of these and they only help to some extent. The reason my issues are so bad is because of EDS. I wear down easier than your average BEAR. I've done steroid injections MULTIPLE times and I can't do them anymore, next runner up is, severe the nerve and cauterize it. Now, if that doesn't sound like a wild night to you, you aren't trying hard enough. ;-) That's just C1-7. Next, I'll get specific on T1-12. Peace out! Blessed Be!
Well, that sucked. Dr. Loomba said there's no disc left so getting in between the vertebrae was excruciating. Next time he said, "Happy Juice." He also said that since the topomax is not working for the chronic migraines and the multiple injections in the occipital area didn't help he is going to cauterize the nerve. that sounds reaaaaaaaaaaally fun. I have a May appointment for my shoulder to discuss replacement and an August appointment for the Expert in the rare disorder that I have SOD (sphincter of oddi) Dr. Martin Freeman IN AUGUST! yeah, he's a little booked. I was accepted into a PhD program! btw.... that's a little unnerving.