5mth update.

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I should probably update since its been5mths since i last updated. A lot has changed in 5mths. Some good, some not so good, some bad.

Ill start with the good. I started Jolie Hair and Beauty Academy in September. And have met the most wonderful group of woman ever. I was so scared. Interacting with other people has been a fear of mine for a few years now. So much i had developed social anxiety. But i am happy to say its going great. I have made some friends i hope that i will never lose. I am loving just about everything about hair, skin and nails. I am learning to love myself again in the process too and learning to let people love me for me.

Not so good and bad. My health is not that much better. Last month i was in the hospital for 13 days with a 107 fever and really bad pneumonia. Its probably the closest ive been to death thus far. Scariest time in my life. But i slowly recovered and returned back to life. Health issues have changed a bit. So have my meds… ill make an updated list.

Asthma..

prednisone, advair,  alvesco, albuterol

Diabetes..

Insulins( novolog, nph,lantus) , metformin, cozaar, lipitor, lyrica

Neurology

Bacolofen, tramodol, salsofate(sp?), topomax

Sinus

All nasal neb meds, there are 5 of them. Plus Itroconazole.

Antihistamine problem

allegra, zantac, singulair

Other misc. meds i take.

flexiril, zofran, xanax, benedryl, probiotics…

i believe ive covered it all med wise. i dropped going to the asthma clinic. they didnt seem to be helping but hindering me. i do still see my ENT who recently just put me back on itroconazole even though i successfully completely the 6mth treatment. I also had a sinus surgery June 30th. But new issues have come up recently and new nasal polyps/tumors have returned. So we will see if returning back on the med will help make them go away or not. The first week was bad, now moving into week two i am starting to feel a bit better but its still a struggle to get up everyday without puking my brains out. Its sorta like chemo.

Ive also developed severe diabetic neuropathy. thats super sharp pains throughout the body, mostly feet, but sometimes hands and sometimes face. im on my second med to try to help it and it doesnt seem to be working either. the first med gave me seizures in my face and hands and made me gain 33lbs.

Everyday is a constant struggle still. But with the having the motivation of school and friends, it makes it a bit easier these days. I dont know whats gonna happen each day, how im gonna feel, who my health will be like, but hopefully, i can count on the smiles and friendships of the ones i love.

Journey to Mayo Clinic, Rochester, MN.

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August 2, 2011 I made the journey to Mayo Clinic in Rochester. Scared, alone, flying for the first time, I was going to hopefully find out what the fuck is wrong with me. As most of you have read I have been through the ringer for the past few years. Getting sicker and sicker, misdiagnoses, lots of medication, tons of doctors. My husband and I decided a few months ago that Mayo was out last and only hope. A doctor had told us to go and found out what the heck was wrong. That i was being ‘treated’ long enough, and no one knew what i was being treated for. Ok so im rambling. Anyways i made my journey August 2nd.

I was staying in a small hotel apartment that worked out great.I arrived to a beautiful bouquet of flowers sent to me as an encouragement to me from my online best friends The Owls. Man i love those ladies. And boy did i need to see those flowers when i got there.  The hotel was about 5 blocks from the clinic and provided a shuttle back and forth to many places, catering to the visitors that came for clinic treatment. August 3rd was my first day of appts. I started with an early morning allergy testing and a Spirometry test. Then later in the day I would meet with two drs. One an allergist and one a ENT. I see the allergist who is very stumped by my story but intrigued. HE decides i need to see a pulmonary dr and do tons more tests. I quickly see an ENT who is thoroughly amazed by the work my established ENT has done. He writes me off, which i expected, because my ENT is priceless. Testing would concede of sputum tests, induced sputum tests, PFTs labs, another kind of breathing test and blood work. Sputum test 1 was i had to carry around two small containers and anything i coughed up i had to spit it in there and return it in the morning. Sputum test 2 was a series of things i did, take a breathing treatment, clear my mouth, blood into a machine, then cough as hard as i could, whatever came up, spit it in a test tube. This was a 12 minute long test. But the staff was so much fun and so nice and really put someone at ease. I had a breathing test where i was closed up into a machine and had to do a series of breathing techniques, then ended that with being tested while i climbed stairs at a certain pace for 3mins. Then i went to do this other breathing test which was rather fun and cute. I sat in front of a animated computer screen, on the screen was a little girl in a hot air balloon and sunshine. The beginning of the test i had to breath hard to make the sun rise into the sky. Then i had to keep breathing and keep the girl in the balloon in the middle of the screen by using the force of my breath. She had to stay as much in the middle as possible. This registered if my airways spazzed while trying to exhale. As much fun as it was, i sucked at it and had to do it like 7 times. But in the end they got the results to test.

Later in the day i was asked to see the pulmonary department. I went right over there and they got me in the same day i needed. The Dr. was thorough but clearly told me that i was not having a horrible issue with my lungs. That it was somewhere between my throat and my lungs. I had to get a Chest xray and CT. Which i had fit in the morning earlier. He told me his suggestion was a strong steroid wean and then to see how things were. I was devastated. I felt pushed away. Felt like once again in my life i was basically being told that i was screwed the rest of my life and deal with it. I ran back over to the allergists office after meeting pulm and he wasnt available yet. So i was told to come back the next day. And i did……..

The meeting the next morning i had hoped would be great. With tests results in and lots to learn. Once again i was very disappointed. This was a friday and i was told that not enough of my results had come in yet. That there was not much to be said. Except that it looked like i might need to consider seeing this Rare Lung disease Doctor in Colorado. Here i thought “oh great, another dr to take my money and pawn me off”. But as Dr. Maddox started to complain that some of my test were leaning towards a rare lung disease that practically this other dr only deals with. He said over the weekend he would contact the dr personally and see if there were thoughts on what to do. So i leave very sad.

The weekend came and i got the best surprise ever. One of my longest best friends whom moved to MN like 3yrs earlier decided her and her family wanted to drive about 3hrs to come visit me. I was ecstatic. Over the moon. The came and stayed in my apartment with me, provided me with some food to make it through so i didnt have to buy every meal out and then took me to Mall of America. Man that was so fun. Spending time with my friend really renewed my energy and will to push on. I miss her dearly and hate that this was how i got to see her again, but blessed as to how much she made me realize i need to find these answers so i could spend many other trips seeing her and her family. I cant thank Heather enough. She is a great friend. 

Monday came around and i was more than anxious. Was i going to get answers? Was i gonna go home empty handed? I prayed and prayed and prayed. Dr Maddox took quite awhile to arrive for our appts. I was super nervous and he didnt seem to confident either. He explained to me that he could not get ahold of the dr he wanted to, that he was out of the country. But some tests had came back he was worried. I had a large amount of Peudomonas Aeruginosa in my system. http://en.wikipedia.org/wiki/Pseudomonas_aeruginosa . Basically a horrible deep cellular infection. His concerns were so great he made a urgent phone call to his infectious disease partner who urged him to put me immediately on a new medication antibiotic called Vantin. Until either heard from the Dr in Colorado to see his opinion on the illness. It was also noted that i have a histamine problem. Where basically everything i touch or do my body acts like its allergic to it. So it over produces histamine and inflames every inch of me. If that could be fixed, things would be great, because technically im allergic to NOTHING.

Also found is that the reoccuring pain ive been having in my left side is a series of severely damaged and broken ribs. That everytime they almost heal i cough, strain, over exert or something that side and rebreak them. I was told that i would have to deal with it with a pain patch and try to get me fixed enough to stop coughing so they could heal. 

The lung issue they believe i have is called Bronchiectasis. Bronchiectasis (pronounced bron-kee-ek’-tas-is) is a condition of the airways in the lungs. These airways (bronchial tubes) are tube-like structures that branch from the trachea into the right and left lungs. When a person has bronchiectasis, the airways are permanently and abnormally widened (dilated) and inflamed.  These damaged airways can no longer effectively clear mucous and bacteria from the lung, so that exacerbations of cough, sputum production, and shortness of breath can occur.
Bronchiectasis is caused by one or more infectious or inflammatory insults to the lungs. Persons with bronchiectasis are more likely to get lung infections, and each lung infection can make the bronchiectasis worse. Therefore, early diagnosis and treatment of bronchiectasis is very important. The journey to fix Bronchiectasis would be long and tedious. Something that a rare lung dr would know what to do.

I was told pretty much Monday that i had nothing else to do there at Mayo. That until i heard from the dr from Colorado there wasnt much to do. I was horrified again. Leaving with nothing pretty much. Early evening about 7pm Tuesday i was told that the dr from Colorado had contacted Dr Maddox and agreed to accept a lung biopsy from Mayo to be sent to him and and tested. So i was set up to have this done Thursday. 

I went in early that Thrusday and got the lung biopsy. The results made me sore to breath, hurt to cough and extremely tired and winded. But it was a major start. It was an answer. And a course of treatment IF all comes back they way think it will.

I did find out that with further and in-depth testing i do NOT have Lupus. I have nearly reversed my Celiacs. As long as i keep to my diet, the Celiacs will stay very calm. Its a lot to digest. Its a huge piece of humbly pie i can tell you that. But now we wait for answers. Now we wait……………

Medical Summary of MonicaDD

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This is the summary I will be carrying to the Mayo Clinic in August.

Medical Summary of Monicadd. 

 September 2006 the month that started it all. I was home with my 2 children when I passed out twice. No rhyme or reason. During one of these times I lost control of my bladder and wet myself. My daughter called 911 and off I went to the hospital. I was placed in isolation for 7 days. Checking my heart and doing some blood work. Leaving me with no explanation at all. I was placed on a large dose of steroids at this time. 

Every time then after that they tried to take me off the steroids it seemed like my body would just freak out. I would do what they called rebounding. And right back on steroids I would go. 

I unexpectedly got pregnant the end of this month. I was sent to ENT. He took a look an said that I seriously needed a sinus surgery that I had a huge overgrowth of polyps in there. So I did. My nose was also reset. This was the beginning of Oct. 2006. 

The pregnancy was very hard from the beginning. I was at the ER almost weekly with what seemed like very weak lungs aka Asthma. Being given large doses of salumedrol , then sent home with more continued steroids. The meds were piling up. Lots of asthma meds and inhaled steroids and nebulizers. During the pregnancy I developed Gestional Diabetes, polyhydroamniosis. (to much fluid). I also developed PUPPPS very early on as well. The pregnancy was often predicted to end badly with either me of baby perishing. I was SICK. I had my son(healthily thankfully) in May 2007. Also during this pregnancy  I had my appendix removed. 

4mths out of pregnancy my gall bladder failed. I had that removed in Sept 2007. My health was very poor still and getting worse. But what was getting worse, I don’t know. I was on a constant dose of prednisone at this time. Weight was coming on strong. When all this started I weighed a mere 112lbs. Tubal ligation was done at 6 wks post partum as well. 

Nov 2007 I had what was called an angina episode. They deemed it to be from a bad combo of asthmatic medications. From this point on I had unexplained extreme tachycardia. With a resting pulse commonly around 150 on a normal basis. Often in the 200s when rushed to the ER. From this point on for a long time I was pretty much bedridden. To many issues for anyone to figure out. 

I will never remember all the tests and procedures and dates so I will now try list at least some of the studies and thing ive had done. There was a host of Gastro tests. From endoscope, colonoscopy, bariums (upper and lower), radioactive egg test, swallow test, ph test. There may be more, but I can not recall at this time. Conclusion to all these is a motility issue and IBS. 

April 2009 I experienced a huge set back and problems with my vision. I was in the hospital(admitted). And had a consult with a New ENT who discovered I needed a very ASAP resurgery of the sinuses. After the surgery he noted that the mucus in my sinuses had taken on a concrete appearance. Having to chisel and break away at it. He also did some drilling and clearing and opening up things. Vision improved at this time for awhile. 

Pulminology testing. I have had several PFTs, and I also had a bronchoscope( lung scrub). I saw this Dr. for awhile and then tried some Similar doctors at Duke University. This Doctor immediately commented on my appearance before anything. Telling me I was the first real case he had ever seen with Cushings. He noted the hump on my back, moon face, large abdominal area, thin skin. I was tried on a new med, that later made no difference so I stopped it. I then decided to switch to an allergist. 

The allergist.  My allergist was probably the most aggressive Doctor I had seen at this time. She saw me very frequently. I was given an allergy test and tons of PFTs weekly to biweekly. I seemed to be doing some what better with a more aggressive treatment. But I was still going to the ER way to often. Several times a month. At this time I was steroid dependent. I could not get off them without serious consequences. I believe though that this doctor was a bit more clear in my treatment. Where I had felt I had been sort of blown off or confusing and to time consuming to others. 

We moved to PA in December of 2009. Back to my husbands home town and immediately set up with his family doctor. His PCP was very happy to try to help me. He immediately ran some different testing(blood) and discovered that I was Celiac and also allergic to Milk/Casein. And what he said was a positive Lupus Panel. I immediately changed my diet for the new found information. I lost a bit of weight and I actually started have fewer and fewer asthmatic episodes. We decided to persue the Lupus dx. I went to a Hematologist and he ran some test and believed as well I had some form of Lupus. Most likely SLE. I was told to see a Rheumatologist. I immediately did this. The Rheumatologist ran a few tests and believe he did not see what he the others did. Saying that he could not accurately diagnose anything , especially Lupus with me being on Steroids and to come back when I was off them. He did have a suspicion of Fibro and placed me on a daily muscle relaxer.  With such a low blow, thinking we had found a reason I gave up my search for answers for awhile.  Developing Type 2 Diabetes along the way. Having fewer ER visits, but still some trips to the PCP for shots of steroids when things were getting hairy. My PCP urged me to see medical advice at the bigger area Hospital. So off to Danville Geisinger we went. 

Geisinger. At Danville as I call it. We were set up with an Asthma clinic.
Which consisted of an Allergist and Lung specialist. After first they were very aggressive. I was given PFTs of course and my medicine was immediately changed. Their thoughts were to get more steroids INTO the lungs and less in the blood stream. They felt that the steroid were doing super damage to me. Steroids alone had caused me to gain over 100lbs. Massive headaches, neurotic tendencies, severe depression, insomnia, diabetes, and a host of other things im sure. So I was switched to a different medicine regimen. 

Geisinger ENT. This is probably my favorite Doctor thus far as he has helped me and really LISTENED to me, more than ANY other doctor. He did some evaluations and found that once again my sinuses were a disaster. He had been doing a trial of antifungal meds himself and decided he would like to put me on the same thing and see what happened. The antifungal started doing wonderful things(Still is).  I saw him often and results began to become amazing. By month 2 of this 6 mth course all the polyps had shrunk or disappeared. But the rest of me was not much better. Meaning lungs and steroid dependency. 

Geisinger Endocrinology. (diabetes) I made MYSELF the appt with the Endo because my PCP was not very knowledgeable on how to treat my out of control diabetes. I was placed on what is now 3 insulins and an oral med. My diabetes is under almost perfect control as of today (7/14/11). My A1C has improved and I was told I have a great understanding on how to control my disease. 

Now that you know the base of my doctors in Danville I will continue now to pretty much up to date. 

We were going to the Asthma clinic monthly. With in the beginning showing great results and positive attitudes. But I was then being seen often mostly by the allergist who ran a few test(can be found in my records). With not a lot of projected paths. After about 4mths of being told “let not rock the boat” I got discouraged once again. I went and scolded and cried to these people to please help me. That my health was not good and I had to get off prednisone. Unable to really find a way, we decided not to return to this clinic. 

I kept in touch through email with the PA of the asthma clinic, asking for advice. Especially when I got REALLY sick. I was so sick that I could not often walk. My lungs were destroyed feeling. I was told to get a sinus culture and to come in to them and get a sputum culture. I did. The sinuses came back with fungal/Staph like infection(can be found in records) and was put on an antibiotic. We had hoped that I would actually get a PICC Line with very strong antibiotics because none seemed to be working orally. I started getting severe facial pains as well. I never returned to the Asthma clinic after the sputum, but they contacted my ENT and kept in touch about what the results to my sputum test was (results in records). My ENT decided I should see a Neurologist at this time. 

Neurology. My neuro was extremely aggressive. Immediately sending me for a series of MRI’s and MRA’s. Which was later discovered that I had what seemed like a Aneursym and a mass in my sphenoid sinus. So working closely with my ENT, they decided I need 2 new CT type scans to get better views on these two issues. It would be ruled out that I did not have an aneursym and it seemed to be more like a infundibulum. And that I would need to have my sphenoid attended to first before they could continue with treatment. 

Back to ENT. I received a instraTrak CT and it was confirmed that I need ASAP surgery for many reasons. One being the presences of a MRSA type infection in my sphenoid. During surgery it consisted of, opening of blocked sinuses with a balloon cath and removing some bone to open things up and then a nice antibiotic wash down and debring. 

Post-op almost 2 wks later and I was feeling great. Having much fewer headaches and almost no facial pain, unassociated with surgery. I do seem to have a problem with my ear that is trying to be taken care of. Seems like a burst ear drum at some point and has a blood clot in or on the drum. 

Return to Neurology. I returned to go over some more things and they felt like I still had some pain from the surgery which could be why the headaches were coming back so soon. That they would prescribe me the med that had been working pretty well for me and then seem me again in about 8wks. 

To date I believe this an accurate list of the ailments/diseases I have told I have:
Allergic Asthma or COPD type Asthma
Acute fungal sinusitis.
Insulin Dependent Type 2 Diabetes
Celiac/Milk Casein allergy
Suspected Lupus(SLE and Anticardiolipin-positive AAB)
Steroid dependency( 10mg dependency)
Cushing Disease( moon face, hump on back, large abdominal area, thin skin)
Infundibulum( out-pouching)
Suspected Fibromyalgia( all over aches and pains)
Panic/Anxiety Disorder
Suspected Trigeminal Neuralgia

** Suspected being neither confirmed or denied, most saying because of medications I take, tests are unsure. 

Im sure there is more that I have forgotten. Another thing I have noticed with being sick is I don’t think straight. I feel stupid. I forget and often cant think of what to say.

I cant begin to tell you the emotional and financial strain this has put on myself an loved ones. The fear of dying and leaving my children and husband and family is very real. Emotionally I feel unstable. I decided to remove myself from the Lexapro I was taking because it has killed so many in a bad combo with other meds. But I have clear PTSD, Depression and panic/anxiety. I am not in any way suicidal, but often feel like a burden to those around me. In the jest of it all I just want to be the healthy active mother and wife I was in the years before Sept. 2006. Thank you for taking the time to try to help me. 

** attached will be a medication list. 

List of current Medications to date. 

Asthma:
Alvesco
Advair
Prednisone
Albuterol as needed.
Prilosec

Diabetes:
Novolog
NPH-Humalin
Lantus
Metformin ER
Vitamin D supp.
Lipitor
Cozaar

ENT ISSUES:
Flonase
Itraconazole
Bactrim
Zofran as needed

Neurology:
Baclofen

Panic/Anxiety Disorder:
Xanax 

Rheumatology:
Flexiril

OTC:
Benedryl for constant itching feeling.

Many answered prayers.

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I can not begin to Thank my friends and family enough for praying their heads off for me lately. Many prayers have been answered. Today I got confirmation that the out pouching I have is not an aneursym. It is more a less like a zit on my nerve. They will continue to monitor it closely to make sure it doesnt fill with blood , but as for now im outta the woods in that area.

I have been approved to try to stay off metformin since my numbers have actually been fabulous the 5 days ive been off it. Of course if my numbers rise, then i just start taking them again.

I did get this encouraging email from my endo today…

I’m pleased with the improvement of the HgBA1C level and the blood sugar level. I’d like to see the Vitamin D level up even a bit higher, preferably up to between 40-60 mg/dl. We can discuss how to get the level up a bit higher when I see you in a couple of weeks.

Keep up the good work with the Diabetes!!

Sincerely,

Ralph H Starkey, MD

 im so happy. yay for some good news for freaking once

 

We still have the journey of the mass in my sinuses to conquer. Which is most likely a fungal ball and an easy sinus surgery fix. We will know more about that on the 29th.

 

I want to thank everyone again. Without your prayers and encouraging words this week would been more impossible. My family thanks you as well.

Not so great news.

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So i dont have the energy to rewrite whats been going on, so im gonna copy and paste a message i wrote to a group of friends of mine. It explains whats going on. A bit of background that some might not know is that ive been suffering from some pretty severe headaches. I went to the Neurologist and he ordered a series of MRIs and MRAs. These are my results……..

As most know i recently got a series of MRI’s on my head/brain. I have been having some sinus issues and some bad headaches. Its not news to anyone that i am sick, but i have to share some new news. That is not exactly great news. My MRI images have found two things. The less severe is a Mass in my sphenoid sinus. Which would located in your frontal lobes. So top forehead. They are fairly certain its whats called a fungal ball and can be easily removed. I have to get a special CT done to see exactly what it is. If it IS a fungal ball. Ill be having surgery to remove that within the next 3 wks. I go get the CT on the 29th.

The more serious news is that i have whats called ‘out pouching’ on an artery in my brain. In other words, i either have a bleeding or non bleeding aneusym. There is a slim chance that if it is not a aneusym then it is whats called a infundibulum. which is basically a tumor on the pituitary gland. I am scheduled to have a special imaging called CTA on Wednesday for this. There is a huge possiblity that i could be having to have some sort of brain surgery with this as well. Depending on the results of the CTA.

I am not looking for sympathy or anything. I just wanted you all to know. I can barely process it myself. CJ has been at work for 3 days, so cant lean on him. I dont want to cry and freak out in front of the kids and scare them. But to be honest, im really freaking out. Im scared. I could just use a lot of prayers and positive vibes please.

Thank you all so much for always being there for me. ♥ ♥

Please continue to keep me and my family in your thoughts and prayers. 

Some good to go with the all the time bad

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Saw my ENT yesterday. I am happy to report that the antifungal treatment i am receiving is making remarkable differences in my sinuses. The polyps that were once there and growing are almost completely GONE. The swelling and inflammation and diseased look to my sinuses is notable different. So much that he said he may wanna video tape my sinuses to show seminars of the difference this medication has shown in me. I still have 5mths left of treatment. But with only a month and a half in and its this good, Imagine what in 5mths what it will be like. Thank you God.

Spring isnt always flowers and sunshine

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So many things happen that i do not write down. There are days i feel all i do is complain and bitch. Then there are days i probably dont say enough.

SO updates on my ailments.

ENT… last time i say him, the antifungal medicines are making remarkable differences in my sinuses. Projected course. 5 more months. Month liver tests. I go back tomorrow. I was also told i might have Trigeminal Neuralgia. We are working on this right now , getting a referral for pain management.

Chiro.. i went back to the chiro, whom are going to help me go through a detox to try to help my body some.

Asthma.. i had to make a rush appt up to danville because i am pretty sick right now. My pcp is taking careless care of me and they were worried. They did mention that my lung xray, even though showing a deep infection, they strength and structure of my lungs are much stronger than a year ago.

Diabetes.. things had been going great. my number had been so good. then i got sick and they went whacky again. I went back for a check up an they did some kidney tests and it seems i now have developed Diabetic Nephropathy. Which is early kidney disease. SO they added yet another medication to my list to take to help try to keep it from further damage. HEre is a link to the ailment. http://en.wikipedia.org/wiki/Diabetic_nephropathy

Everytime i feel like im taking huge steps forward, i get shoved back twice as far. I just wanna begin to heal, be on the road to recovery. But its not looking so good.