Help me take my kids to Disney the deserve a break
My Travel Story
So let me tell you a little bit more about me. I am 36 years old. I graduated high school in 2006. Then I went off to college. I graduated from University Wisconsin River Falls with bachelor in science biomedical and animal science with a minor in chemistry. I have worked with animals all my life. I love them After college I proceeded with numerous jobs working with animals.
Got married and divorced but I helped create two of the most beautiful children you have ever seen. ❤️ Hayden is almost 9, my mini-Kaylynn is 7. Best thing I have ever done. They are the most amazing thing that has ever happened to me. They have changed my life! Love them ❤️They are my reason to keep fighting this fight.
My beautiful bonus kids are Zoe who is 7 and my silly chick Ava she is 6. Their dad now he is a keeper. Very supportive man. Mark is the love of my life. He is amazing! He has been there every step of the way through this difficult time. He has dealt with this for 5 years now and has supported me the entire time. Through the good and bad he has been there.
So now that you know a little bit about me and my family, now let’s get to the point of this.
The last 5 years have been pretty harsh on me. I am a mother looking for some help. My confirmed disease so far is Systemic sclerosis, gastroenteritis, esophageal dysfunction, small fiber neuropathy and CREST syndrome, but these are all symptoms and there is no concrete diagnosis. Also, I am MRSA positive and have been hospitalized twice for it. I have had 2 DVTs which are blood clots which they do not know why I had them. I have had a TIA which they then discovered that I have a PFO which is a hole in the heart. I have EOE which is Eosinophilic esophagitis which is an allergy in the throat. Mine is so bad I choke on food and throw it up all the time because it gets stuck. I get a lot of UTIs and have a lot of urinary problems. I now have no immune system because they have wiped it out.
I have hip dysplasia, sciatica, fuse SI bone in my back and I have extreme joint pain and muscle aches all the time and they never go away. I suffer from insomnia due to the intense pain. Migraines that mimic stroke symptoms as well. With my skin it falls off and will not heal and it is all over my body. Anxiety and Depression but that is not surprising when you look at my medical history The doctors have told me that they have no idea what is wrong with me and that they have run out of options.
They call me a Zebra which means I am an extreme case. They have said that the rarity of my disease is one you read about in text books. They have done all that they can at the University of Minnesota and Mayo won’t take my case because they also do not think they can figure out what is wrong with me. My list of medications is massive. I take 23 pills in the morning and 10 at night just to maintain my symptoms and try to keep it so I can function. As you can imagine this process is not cheap. They are not all covered under my insurance because they are tier 3 drugs and specialty drugs.
They have done so many tests, I have to see doctors every week. That itself is costly and not to mention hard to work as well. I have now been confirmed disabled but I am still working because I do not get any assistance.
I have done physical therapy for my hip at Mayo. I go to Trai for physical therapy on my spine. I am doing pool therapy to help with the chronic pain all over my body. I have done 10 MRIs, 13 CTS, 48 X-Rays, 33 EKGs (every time I end up in the ER, they have to do one), Nuclear testing, and over a dozen ultrasounds.
Blood tests CRPs, Metabolic panels, CBCs, Lactic Acid, Lipase, Latic acid, blood cultures, creatinine, glucose, INR, troponin, CMV IGM antibody, Ferritin, d-dimer, c-reactive protein, protein- INR, Procalcitonin, lactate venous, Erythrocyte sediment rate, cyclic citrullinated peptide antibody IGG, rheumatoid factor, ANA (positive test), TSH with t4 reflex, SSB LA ENA antibody IGG, SSA RO ENA antibody IGG, Lupus panel, DAN double stranded antibodies, CK total, angiotensin converting enzyme, aldolase, BETA 2 glycoprotein 1 antibody IGA and IGG and IGM, Complement C3(positive result) and C4, Ehrlichia chaffeenis ABYS IGG and IGM, ENA antibody panel, Vitamin D and B12, TSH with free T4 reflex, Quantiferon-TB, Immunofixation serum, myeloperoxidase and proteinase 3 panel, lactate dehydrogenase, hep b core antibody, hep b surface antigen, hep c antibody, HIV antigen antibody combo, babesia antibody IGG IGM, anaplasma phagocytoph antibody IGG IGM, EBV capsid antibody IGM and IGG(positive result), JO 1 antibody IGG, Cardiolipin antibody IGA, ANCA IGG titer, Folate, cryoglobulin, polymyositis and dermatomyositis panel, PM SCL 100 ABY IGG with reflex to ANA IFA, RNA polymerase 3 antibody IGG, scleroderma antibody SCL70 ENA IGG, Centromere antibody IGG, protein C Chromogenic, protein S antigen free, antithrombin 3, blood morphology, reticulocyte count, heavy metal panel, hemoglobin A1c, Blood sent to Mayo for misc. tests, protein electrophoresis serum, ELP total protein serum, Vit E, Vit B6, Vit B1, parietal cell antibody IGG, protein Immunofixation serum, homocysteine, methymalonic acid, B12, paraneoplastic autoantibody evaluation, phosphorus, magnesium, procalcitonin, renal panel, ANCA IGG, anti-nuclear ABY IGG, Iron and iron binding, parathyroid hormone, cyclic citrullinated peptide antibody IGG, DNA double stranded antibodies, IGE , CA 125, CEA, Factor 5 Leiden mutation analysis, CA27.29 breast tumor marker, Lyme disease ABS, serotonin blood, CH50, IGA, IGG, T-cell subset , immunoglobulin G subclass, Igm, Paraneoplastic autoantibody evaluation, leucine-rich glioma inactivated protein 1 IGG, CASPR2, ARUP, 1.25 dihydroxyvitamin D, ANCA , A IGG titer, angiotensin converting enzyme, histone antibody IGG, Centromere antibody IGG, deamidated gliadin peptide AB IGA and IGG, tissue transglutaminase antibody IGA, myeloperoxidase and proteinase panel, cyclic citrullinated peptide antibody IGG, leucine- rich glioma inactivated protein 1 LGl1, A1c, Thiopurine methyltransferase RBC and INR. That is the most of the blood work I am sure I missed a few.
Sepsis lactate protocol, Vancomycin Levels, epidermal nerve fiber density and EMG
UAs so many to count, one a month if not more.
Spinal Tap 3 times
Surgery: ovary removal endometriosis also found tubes removed due to those findings as well, endoscopy 4 times with biopsies, colonoscopy, tonsil removal and emergency surgery ovarian cyst eruption.
Esophageal, Tissue transglutaminase ABY IGA and IGG, NM hepatobiliary scan with GB EF, Barium study, swallowing study, gastric emptying,
Trigger point injections over 10 times in neck and back.
Sorry for the long description, the doctors have not found anything and have decided to throw in the towel, and it is devastating. I have given up so much to get help and now they are not going to help anymore. I refuse to take that as my answer, and I refuse to let this disease run my life. I am tired of going to the doctor every week and my life revolving around my disease and doctors. My kids don't deserve to watch me lose this battle. I refuse to give up but financially I have to at this point because the medical system has made it so that I have no other choice with how much money they have already taken.
I am really tired of spending all my time in the hospital and doctors' office. My life revolves around going to specialist after specialist and I still have no treatment plan to help me and my symptoms. Some days I have to choose between my prescriptions or food for my kids or gas money to get to work. My medications alone are so expensive that my insurance doesn't cover them, and I cannot afford them. The hospital bills have stacked up even with good insurance it is not unmanageable to how much the cost is. I know going to John Hopkins is also going to add on to the extreme medical debt I have. Not to mention my house payment and feeding my family is the most important thing to me.
I refuse to quit work because I need some sort of income, but the caveat to that is now I cannot get any assistance through the state or my county because I make more than what they allow. They do not look at the situation but the numbers they have on paper not even the numbers that are true due to expenses. I am exhausted from trying to get their help. All they tell me is to quit work and go on disability. That is just not who I am as a person. I cannot just give up my job to collect disability and do nothing. Not to mention that it wouldn't go into effect for a year, and it is such a small amount it wouldn't even cover my medications, not to mention the cost of living.
I know that there is not a cure for the disease but maybe there is a treatment plan so I can live my life and spend time with my kids. They deserve to be with their mom and not worry about me being sick all the time. I am devastated with the effects of this disease consuming my life and my children have been so impacted by it. it just kills me inside to see them worry so much about me. Please help me try to find out what this disease is and a treatment plan so my family and I can live our lives.
Thank you so much for taking the time to read my story! I would appreciate any help possible. I am truly out of options and I don’t want to give up or lose everything I worked so hard to get. Also, I can prove to you that I have everything listed above if not more. I have medical records, bills, prescriptions and more.
I would like to give everybody an update as of right now.My disease is no longer in remission and under control.I've been undergoing an Aggressive treatment of chemotherapy medications to see if they will help put the disease into remission.If this does not happen then I will end up doing infusions to see if they can rebuild my immune system.
As of now according to my new rheumatologist all of the muscle damage that has occurred is permanent and irreversible and the pain will be there for the rest of my life and the difficulties that come along with walking and muscle aches and joint problems will all be there and are not able to be reversed. I am also going to be undergoing the aggressive treatment for 6 months.If not to a year and it can cause a lot of stomach issues and problems just similar to what someone would go through when they go through chemo therapy my Dose is a lot lower than what would be used to treat tumors.
I am very happy to have found a rheumatologist who is interested in my case and willing to help me.And I am also very upset with the fact that I should have been treated with this drug 6 years ago and it could have prevented the muscle damage.Because my last rheumatologist decided that I was more of a number and a paycheck instead of actually, treating me like a human being.Now I get to live with the mistakes that he made for the rest of my life. I wish I could give better news. But right now. There is no good news other than the fact that I have a new doctor. Hopefully things will start to look Upward. But I will not know for at least 4 more months. If the medication may or may not be working and at 6 months, we will know if this treatment will put the disease in remission. Or if I need to go into infusions. At this point, the doctors have told me that they have nothing else that they can do for me and are at a loss because of all the treatments they have given me.I have not responded to any of them.And these are the last two treatments that they are able to give me.God bless and have a wonderful day.
Laura Burgstaler
20859 independence Ave
Lakeville mn
55044https://gofund.me/637e058d
https://familiesusa.org/stories/laura-burgstaler/
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